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Saturday, December 29, 2007 7:19 PM CST

Hello from Nags Head, NC! We had an uneventful drive down... "short" compared to our travels earlier this month. The girls were travelling pros again and we arrived at our magnificent beach house around 4:30PM on Friday. Allyson is doing amazingly well. Mark and I are shocked, to tell you the truth! She's been pretty well-tempered and slept through the night our first night here. Morgan was actually the "difficult" one to get to bed. Allyson has cried for "Mama" only a few times and I've actually been able to get that "accessory" off my neck for much of the time.

Today we went to the NC Aquarium on Roanoke Island and then spent the afternoon at the house. It was overcast all day, but warm - near 70 degrees here! Mark braved the cold waters to go boogey boarding and was in full gear - wetsuit, booties, gloves, and a hood. The water is 55 degrees, but he stayed warm and caught a few waves. Morgan and Spencer have been having a ball playing together and loved going in the hot tub after dinner tonight! They're staying in the kids' suite together (complete with 2 pyramid bunk beds) and their own TV and video games and kid play area. They're in kid heaven!

Tomorrow is supposed to our rainy day, so we'll stay in and celebrate Christmas together and exchange our gifts... perhaps venture out for lunch at one of the local restaurants, but mostly have a low-key day. Great Grandma Janet (who celebrated her 90th birthday in August) is enjoying watching her three great grandchildren run and laugh and play together. I'm glad that she can share in this special time with us!

Happy New Year to you all and Happy (almost) Birthday to me! Thank you all for your ongoing love and support this year... keep praying that 2008 brings answers to our challenges and continued good health for all!

Love,
Kristin

P.S. Go Penn State! We have a lot of fans in this house watching the game right now and we KNOW that Uncle Tommy is cheering on his alma mater! For all you football fans, here's hoping that YOUR TEAM wins its game this week!

Thursday, December 27, 2007 9:37 PM CST

Greetings from a rainy then sunny then rainy then sunny northern Virginia! Each day the skies are different... I'd forgotten how much weather can vary from day to day - ha ha!

Well, most of the house is DONE... and all the new presents have been put away. We had a great day at Teetay and Geep's house and enjoyed the time we all could spend together. Christmas Eve was most enjoyable... especially after all the "little people" were asleep and the big people (who finished their St. Nick "jobs" earlier in the day...) could hang out at "be merry." Allyson and Thomas were both a little out of sorts on Christmas day - she only wanted to sleep and he needed to sleep more, but Morgan had enough energy to make up for all three of them! It's still so enjoyable to see her eyes light up when seeing her gifts for the first time. I hope that Allyson and Thomas will share her zest for the holiday before she's "over it". :-)

Tomorrow we're headed to Nags Head, NC to spend New Year's with Mark's family. His parents, grandmother, brother, sister-in-law, and nephew will be joining up at the beach for a long weekend. The temps are supposed to be mild, but they're predicting rain, so I don't know how many walks on the beach we'll be able to take. We're hoping to relax and enjoy one another's company as it's been a long time since we've all been together! Please pray that Allyson isn't too disoriented and is able to adjust to yet another new surrounding and give this weary mom a break!

I've posted links to Ashli's pictures from Ally's birthday and from Christmas so you can see how our days shaped up!

Hope you all are enjoying what remains of this holiday season! Happy New Year too!

Kristin

Wednesday, December 26, 2007 6:06 PM CST

New update and pics coming soon....

Hope everyone had a wonderful Christmas!!!!

Note my new e-mail address below:

kdmkelso@verizon.net

Also, new link to pictures of Thomas and from Allyson's birthday at Aunt Ashli's house!

Hugs and love!

Kristin

Saturday, December 22, 2007 7:33 PM CST

HAPPY BIRTHDAY TO ALLYSON!!!!! Thank you all for the birthday wishes in the guestbook. We appreciate your thoughtfulness!

Allyson had a pretty good day. We had a playgroup-type get-together at Aunt Ashli's house - thank you for hosting that! Ally was in good spirits most of the time and seemed to enjoy herself. She even "let me go" for a brief time and played with a couple of friends in front of the Christmas tree.

We returned to Teetay and Geep's for lunch and I got all my presents wrapped - mostly ones sent from CA before our move and some new purchases too. Mark ventured out to do HIS Christmas shopping... Allyson took a three-hour nap... Geep began the process of making Houska (Christmas bread - his mother's recipe) which is a 6-7 hour process... and Teetay and Morgan also went shopping for a few things that Morgan needed to purchase for her parents... it was a productive day and fun as well! Allyson wasn't much into opening presents, so Morgan was a BIG HELP in that area! She also didn't want to eat her cupcake (she asked for crackers) and screamed "no singing" when anyone tried to sing "Happy Birthday" until Grandma and Grandpa called tonight and sang to her without her fussing... I guess she'd held out all day and couldn't fight it right before bedtime.

Morgan is spending the night at Teetay and Geep's house tonight. Allyson was supposed to stay as well so that Mark and I could put the finishing touches on the house tonight and tomorrow morning, but she decided that she wanted to go home with Mommy and Daddy, so our plans will have to be implemented tomorrow during the day.

Hope you're all having a great pre-Christmas weekend!

Kristin

Thursday, December 20, 2007 8:27 PM CST

Happy Friday... almost! We've been making a lot of progress on the house despite the various illnesses that have made its way through the family. We're all feeling better now and are looking forward to celebrating Allyson's birthday on Saturday and Christmas together in just five days.

Morgan is loving her new school! She rode the bus for the first time today and said it was "so much fun"! She said the best part of riding the bus was being able to "scream and talk loud and laugh and sit with your best friend and no parents around - it's like a party!" I hope that the bus driver doesn't kick her off with that kind of attitude... :-) Tomorrow we're going to see Santa after Morgan gets out of school - hopefully that will go smoothly and Allyson will be willing to sit on the jolly man's lap! I've been in the Santa picture with them the last two years, so maybe they'll go solo this year.

The Christmas tree isn't up yet, and Mark is trying to persuade me not to put it up... We'll be leaving for a week on the 28th to spend New Year's in Nags Head with his family and then head to Texas for my cousin's wedding on January 5th, so it might be more trouble than it's worth. We have some minimal decorations up around the house, so it's still a little festive and Morgan's tree and the angel tree are up and shining bright!

We're missing a few boxes, so we have to sort that out and start filling out our claim sheets over the weekend. Some notable items that are missing include ALL of Morgan's shoes (except the ones she traveled with), the set of knifes with its wooden block, and the toaster oven. Guess I know what Santa might be bringing us for Christmas? We got the second part of our shipment on Tuesday, but haven't found those necessities yet. Only three major items are broken... the desktop computer (which is being fixed right now and is the reason we don't have e-mail set-up yet), the big screen TV (which works only when you kick it - literally), and the coffee maker (which works intermittenly after it's unplugged and plugged in a dozen times or so)... other than that, everything is fine! :-)

Have a great weekend and Merry Christmas!

Love,
Kristin

P.S. My Christmas cards went out today - some of you may get them before Christmas, but most will be late. I'm sure you'll cut me some slack this year! In case you need our new address, I'll post it again.

6509 Legendate Place
Burke, Virginia 22015
703.440.9779 (home)

Monday, December 17, 2007 7:12 AM CST

Hello there! Well, the stomach bug saga continues...

I should be taking Morgan to school right now for her first day at White Oaks Elementary, but she was "attacked" by the stomach bug at 11:30 last night and was up on and off until 4:45. She's feeling better now, but hasn't eaten yet, so we'll have to see if her first day will be tomorrow.

Allyson seemed to recover after less than 24 hours. She was still clingy yesterday, but ate a little and was "puke free."

Teetay also had a bout with the bug last night, so it looks like it's making its way through our family. Let's hope we're rid of this soon!

The girls' rooms are done except for hanging pictures. Morgan even put up her own Christmas tree last night before bed. We'll probably set up the big tree in the family room today or tomorrow. Each room is "done" (meaning "free of boxes") for the most part except for the master bedroom. We'll tackle that room today and then start hanging pictures! My goal is to be done by Wednesday - a week after we moved in...

As Ashli mentioned, I am unreachable by e-mail... We haven't set up our new accounts yet nor have we merged our old addresses. We'll keep you posted on when that's established. You can reach me by phone - cell # is the same and our home # is 703.440.9779.

Happy week before Christmas!

Love,
Kristin

Saturday, December 15, 2007 8:15 PM CST

Yes, we ARE here in our new home in Virginia!!!!

It's been a tiring few days of unpacking and setting up each room in the house. I won't go into all the details, but our household goods (most of them...) were delivered on Wed./Thurs. and the moving truck pulled away from the house at 3:30AM on Thurs. morning!!!! Its departure was only slightly delayed after Mark JUMP STARTED the 18-wheeler because all 4 of it's batteries were dead! Just when we thought that 2AM was late (the time they stopped loading the truck in CA)... they managed to keep us up later!!!

All is well for the most part... I'm still battling a cold/cough and Allyson has come down with a stomach bug as of this afternoon. Mark is just plain tired especially after hauling 4 loads of empty boxes/packing paper to the recycling center today and Morgan is her perky self... soaking up the pink glow of her new leopard room. She's excited about starting school on Monday and going shopping for her supplies tomorrow! Pray that nobody else gets sick (Thomas had a 24-hour stomach bug earlier in the week) and that the rest of the house "falls into place" (literally!)

Hope you're all having a great weekend and enjoying snow should it fall in your area... Thanks for keeping us in your thoughts as we transition into our new home. Thank you also to all the helpers who have been here this week - Susan and Steven, Theresa, Pam, Ashli, and especially Teetay and Geep who did a TON of "house stuff" before we even got here! We love you all!

Kristin

Monday, December 10, 2007 8:46 PM EST

Hip, hip, Hooray! We've made it to Virginia and are officially in the EASTERN TIME ZONE. Another great day of traveling and just one day to go... We have a relatively short day tomorrow - just over 300 miles, so we should be arriving at Teetay and Geep's doorsteps shortly after lunch. We're all very excited, but are tired enough from our drive today and swim in the hotel pool/hot tub. I'm happy to report that Allyson fell asleep quickly tonight and Morgan's eyes are almost closed as well. We plan to be on the road by 7:30AM, so we can conclude this journey!

Hope you all have a happy Tuesday! I KNOW that we will!

Love,
K, M, M, and A




Sunday, December 9, 2007 9:18 PM CST

Hello from Memphis, Tennessee! We've been on the road for six days now and will be in northern Virginia in just two days! Hooray!

Everything is going well... we had a terrific visit with the Huxmans in Kansas and with the Crandells in Texas. Morgan and Allyson loved playing with their kids and Mark and I enjoyed the company of the grown-ups and having home cooked meals. Thank you to both families for your gracious hospitality! I'll post some pictures tomorrow night... the camera is packed up in the car tonight.

I'll keep this brief as I'm typing in the dark in our hotel suite. There's a partial room divider with a SINGLE sofa bed and a desk. Allyson hasn't fallen asleep yet - she was just singing "oh where oh where could my little dog be?" - and we're waiting for her to get to sleep so we can move her into the single bed and then we can go to sleep in the queen bed. We're both pretty tired and fighting off colds and are anxious for some shut eye... Allyson is wide awake for some reason, but has been in bed for an hour and a half already... If she doesn't fall asleep soon, I think Mark and I might be sleeping on the little sofa bed - wouldn't that be funny?!?!? Each of the girls has her own queen bed and we're cramped in a twin...

The weather has been pretty good as we've traveled almost 2500 miles now. We were worried about snow/sleet last Thursday, but managed to avoid that. We had some rain on Friday and today, but most of the trip has been clear and dry.

Morgan and Allyson continue to "ride well" in the car. Morgan has been working in her school workbooks so she "doesn't get behind" (her words, not mine!) and Allyson likes looking at her lift-the-flap books and being amused by just about anything Morgan does or says. We're having a lot of fun and have been so blessed with safe travels!

We'll arrive at Teetay and Geep's house sometime on Tuesday afternoon. Tomorrow's stop is in Abingdon, VA... just over the border from Tennessee. We'll drive across Elvis' home state tomorrow and are looking forward to being IN Virginia by the end of the day.

Thank you for your prayers and support! Can't wait to see so many of you in NoVa soon!

Love,
Kristin

Wednesday, December 5, 2007 9:47 PM CST

Greetings from Lakewood, Colorado - just west of Denver. We've traveled over 1000 miles in two days and all is well. As Teetay mentioned, we got off to a slightly rough start as our "last night in Cali" wasn't exactly as we hoped and planned. After finally getting on the road around 9AM, we made it to our first night's destination (Cedar City, Utah) at 7:30PM. The trip was fine, but we "lost" an hour from changing to Mountain Time and we ran into some traffic around Las Vegas. We were all pretty weary (especially Mark who was up until almost 3AM while the movers were loading the truck...), but we survived. We ate dinner at Chili's and were ALL in bed and asleep by 9:30 Tuesday night.

Today was much better... we got up early and had breakfast at our hotel and were on the road by 7:30AM. Today was our longest planned driving day, and it was definitely the most beautiful that we'll probably see. Neither Mark nor I had driven through southern Utah and through the Rocky Mts. of Colorado. Yes, there were some winding roads and we reached an elevation of over 10,000 feet, but it was really a breathtaking drive. The picture on the homepage is of the ski slopes at Vail, CO where the elevation was marked at over 8000 feet. Wish we could have "hit the slopes"...maybe next time?!?!?! We arrived at our hotel by 5PM and took a dip in the indoor pool and hot tub. We also enjoyed a complimentary dinner at the hotel - a taco bar with beer and wine - that satisfied all of our travel day needs!

Tomorrow we're headed into Kansas and will stay with our friends, the Huxmans. We're planning on getting another early start and being at their house south of Wichita by dinnertime. We'll "lose" another hour as we move into central time and by the end of the day, our journey will be almost half-way done (mileage-wise).

Thanks for keeping us in your thoughts and prayers as we travel this week. Both Morgan and Allyson have been great travelers so far... They have MORE than enough "to do" in the backseat of the car and we haven't heard "I'm bored" yet. Let's hope that will continue!

Happy snow days to all of you who got a blast of wintery weather... we saw a lot of the white stuff today on the ground and on the mountains, but fortunately didn't have to drive through any of it!

Another update soon... two days down and six to go!

Love,
Kristin, Mark, Morgan, and Allyson

Saturday, December 1, 2007 9:35 AM CST

Happy (WEEK AFTER) Thanksgiving!!!!!

Yes, I realize that I’m WAY overdue for an update… but how is “soon” actually defined??? Isn’t it all relative?!?!?

I actually started this update on Thanksgiving Day, but have yet to finish it… I’ll call this “PART ONE” and hopefully get “PART TWO” posted before the computer is packed up on Monday. As I type this, I’m surrounded by boxes and very sparse furnishings throughout the house. Packers have been here for the past two days and they’ll load the truck on Monday. We’ll hit the road Tuesday morning to begin our journey EAST – hooray!

For the past month, we have been busy with moving preparations, doctor’s appointments, therapies and assessments, finding a house to rent in VA and finding a tenant for our CA house… ah, the list goes on and on….
I’ll do my best to catch you up on everything that’s been happening the past four weeks.

First, on the homefront… Yes, we finally have a house to rent in Burke, VA. It’s “ours” effective TODAY!!!. Our “Agent Teetay” did a great job finding us the right place with all the amenities we could want! The house is centrally located to shopping, schools, libraries, parks, churches, and commuter transportation. We’ll be about 20 minutes from Teetay and Geep’s house and 25-20 minutes from Ashli, TG, and Thomas. The “commute” to see them will be great! We also have tenants for our house in California – they’re scheduled to move in Dec. 15th and have signed a two-year lease. That’s a big relief for us as well… after months of waiting for a buyer, we were able to find a renter pretty quickly. For those of you addressing holiday cards, please note our new address: 6509 Legendgate Place, Burke, VA, 22015. Home phone is 703-440-9779 which will be hooked up on Dec. 12th.

Second, on Allyson… We have been so busy with doctor’s appointments, school assessments, wrap-up therapy sessions, etc. She had her craniofacial team appointment at the end of October. Everything was “status quo”… her doctors were impressed with her progress and pleased that she’s been weaned off the feeding tube and now eating 100rally. Here’s the run down of the key points from the appointment which ended up being a 13-hour day for Allyson and me!

Plastic Surgeon (cleft lip/palate) – Dr. Reinisch – pleased with overall progress and transition to oral feeding; next appt will be 10/08 or sooner with new Craniofacial Team in VA

Orthodontist/Dentist at CHLA – Drs. Yen and Groper - follow-up with pediodontist for routine dental care/treatment; teeth are healthy, but have poor enamel. Emphasized importance of brushing to preserve existing teeth (6 upper, 3 lower) and prepare for dentures/partials by age 4; next appt will be ASAP with Pediodontist in VA

ENT –Dr. Geller - cleaned both ears thoroughly - left tube is still being pushed out and has debris behind it – will replace when needed – is not concerned with left ear blockage since hearing test was passed; next appt will be ASAP once settled in VA

Speech/Language Pathologist at CHLA –impressed with progress and language skills – continue to receive speech services locally and work on articulation – speech delays/articulation issues do not sound “cleft related” – encourage Allyson to use her “big voice” to strengthen diaphragm and promote stronger breath sounds

Geneticist – confirmed that Allyson has EEC Syndrome per the blood test she had earlier this year. Basically, this means that her clinical diagnosis is now supported scientifically and that she has a mutation of the p63 gene; because characteristics are not present in Mark, Morgan, nor I… no further testing is necessary. It’s just “good info” to have as Allyson gets older and research opportunities may be available.

Other doctor stuff… We saw an Optometrist at the Center for the Partially Sighted last week. He confirmed that the corneal scarring of Allyson’s eyes have significantly impaired her vision. Corrective lenses will not improve her visual acuity. The doctors prescribed tinted glasses for Allyson to wear indoors and outside that will help reduce the glare and her sensitivity to light. The optometrists also made many recommendations to help Allyson in an educational setting. Our goal is to have her in a “regular” preschool class and receive the assistive technology and/or vision specialist to help her be successful. Her left eye is completely “foggy” and she can only see light and dark. The vision in her right eye (the “good” eye) is 20/400 which is classified as “legally blind”. She needs magnification to see small objects and anything more than 5 feet away is not clearly visible to her. Allyson’s glasses arrived this week and she’s been reluctant to wear them inside – she’s fine outside since she’s been wearing sunglasses regularly for 7 months. We’ll continue working with her and encouraging her to wear her “princess glasses”. They’re pretty cute on her, so I’ll try to get a picture soon!

Of course, we were hoping that these Optometrists would be able to help her see “better.” But because of the nature of her impairment (the scarring), the best we can do is help Allyson see the best that she can. When we get to VA, we plan to see a cornea specialist and optometrist skilled in visual therapy. Our goal is to maximize her visual functionality. The scarring is not going away in the near future – surgery may be an option down the road, but for now we’ll work with Ally to continue visual stimulation and help her function in the sighted-world.

We also got her assessment completed with the Oxnard School District locally. They were extremely thorough and wrote a comprehensive IEP for her preschool needs. I’ve spoken with the Preschool Special Ed people in VA and they said they’ll get Allyson started with services as soon as possible once we arrive and get her registered. Since she has a current IEP, she will be able to start “right away”, so I’m so glad we were able to get her assessments done ahead of time. It was a lengthy process – 12 visits over the course of three weeks with various specialists from the local schools. The bottom line is that Allyson would benefit from being in a “regular” preschool setting where she can receive Speech and OT once a week. If possible, a teacher/aide for the Visually Impaired should be available to assist her with her visual needs. I’m anxious to start her in preschool as I know she’ll benefit from the specialized instruction as well as the interaction with other children her age! She’s been playing with grown-ups for her whole life… I’m sure that she’s ready for a change as well!

More to follow… either this weekend or from the road…

Have a great weekend! Happy DECEMBER!!!!

Kristin and the Gang :-)

Thursday, November 22, 2007 10:20 AM CST

HAPPY THANKSGIVING TO ALL OF YOU!!!!

WE ARE SO THANKFUL TO HAVE YOU IN OUR LIVES AND FOR ALL THE LOVE AND SUPPORT YOU GENEROUSLY GIVE...

WISHING YOU AND YOUR FAMILIES A VERY HAPPY THANKSGIVING DAY!!!!

WITH LOVE,
KRISTIN, MARK, MORGAN, AND ALLYSON

Friday, November 2, 2007 10:20 PM CDT

Update coming soon....

Wednesday, October 24, 2007 0:12 AM CDT

Thank you all for well wishes and thoughts of us during these terrible fires. We are many miles away from all of them, but there is ash and dust and smoke in the air. The temps have been high as well - over 90 degrees here today and it never gets that hot in the summer time. With no a/c and not being able to open the windows, it's been toasty inside. The air in our area is improving and should be much better by late Wednesday.

Allyson has her FINAL appt. at CHLA on Thursday... her last craniofacial team meeting before we move. Let's hope that she gets a "good" check-up and some referrals to a team in Northern Virginia.

Our prayers are with all those directly affected by these terrible fires, Uncle Loren's niece, the Franzen families, and the Logan families.

Kristin

P.S. And yes, "Agent Teetay" has done a great job pounding the pavement looking at rentals this week. Hopefully, we'll have a house to move to by the end of this month! :-)

Friday, October 19, 2007 3:32 PM CDT

Hope everyone is enjoying this first full month of fall... hard to believe that October is over half-way over! It has flown by for us!

We're counting down the weeks until we head "east." I've been looking at different routes for our cross-country trip and we're getting close to deciding which "path" we'll take. Mark and I are determined to avoid I-10 which is the southernmost route... we've both seen enough of THAT interstate on our three previous cross-country journeys! We'll keep you posted as our travel plans materialize and let those of you who may live "along the way" know when we'll be showing up on your doorsteps! :-)

We've almost completed Allyson's assessment with the Oxnard school district. They'll be writing a Preschool IEP for her before we leave and we'll be able to use this assessment as a foundation for starting her in preschool in Fairfax County in January. Most likely, the recommendation will be for Allyson to attend "regular" preschool and have Speech, OT, and Vision services brought to her in the regular classroom. She "tested" well and scored at or above average on her expressive and receptive language. Even though she struggles with articulating many words, she attempts the words and her cognitive skills are high. We've estimated that Allyson has close to 300 words. At age three, the average child has 300-1000 words. Just to give some perspective... last November (a little less than a year ago), I remember speaking with the Speech Pathologist on the Craniofacial team and I had made a list of ALL of Allyson's words at that time. There were SEVEN words on that list. She's done an amazing job with Deborah, her speech therapist, this year... however, I think the biggest improvement in her speech came this summer once she started eating orally. It may sound simple, but her mouth just works so much better now!

We've also wrapped up her assessment with the Junior Blind Society and are awaiting their report and recommendations. We have an appointment with an optometrist on November 16th to determine if he thinks that Allyson could benefit from corrective lenses. She continues to bring her eyes very close to two-dimensional objects and is having problems with depth perception at times. Because of her vision issues, she has regressed in her ability/accuracy to perform some fine motor tasks and her OTs are working with her to make her successful again. She doesn't consistently perform skills that she had mastered six months ago like stacking blocks and stringing beads. From what her therapists and I have observed, her "eye issues" fluctuate from day-to-day and affect her overall well-being significantly when she's having a "bad eye day." It's been frustrating, but I'm hopeful that the Jr. Blind and Vision Specialist will be able to help. Her vision needs/treatments will be the top priority once we're settled in Virginia.

We're heading to a local farm on Saturday for pumpkin picking and fall fun! On Sunday, we're having our FINAL Open House and then we'll switch gears and turn our house into a rental property. We've had a couple of showings in the past two weeks, but no offers have come our way. With the clock ticking, we've decided to rent out our house here and move into a rental in the Burke, VA, area. There's always a possibility that we'll return to this area in 2-3 years, so maybe THIS is "what's meant to be..." Keep us in your prayers that we find a good and responsible tenant to rent our home for the next few years!

Have a great weekend!

Kristin

Sunday, October 7, 2007 10:32 AM CDT

Greetings on a windy Sunday morning! Yes, today is our wedding anniversary and we're nearly "blown away" that twelve years has passed... where has the time gone?!?!? We'll be heading to church in a little while and then out to lunch with girls for our anniversary celebration!

It's been a busy week since returning from Florida on Tuesday evening... therapies, doctor's appointments, school district assessments, playgroup, laundry, school, work, more laundry, showing the house, etc. All is well and we're happy to be back in our "normal" routine!

Our trip was great! The girls traveled so well and were troopers through all the hustle and bustle of activities and hotel changes and events. I'm glad that Teetay kept you up-to-date while we were away. I didn't even TOUCH the computer for over a week (other than checking on our flight when we departed Orlando!) and it was great!

We definitely want to "do Disney" again when we have more than two days to see it all. Shades of Green was a great resort and we'll stay there again as well... although the "Nick Hotel" was everything we hoped it would be and Morgan and Allyson both had a blast there as well. Josh and Kim's wedding in Tampa was a beautiful event and Mark did us proud as the best man and master of ceremonies at the reception. Both and Josh and Kim's families were gracious hosts and everyone involved with the wedding seemed to have a terrific time. We were thankful to have Teetay and Geep with us to help take care of the girls so that Mark and I could enjoy the rehearsal dinner alone and the reception (although Morgan and Allyson hung in there until after 10 PM!) with the other grown-ups. We even had a date night at Disney World - dinner at House of Blues and a stroll through Downtown Disney. Thanks for being there, T and G!

Hope your October is off to a great start! I'll update you with more details of doctor's appointments and evaluations later this week. All is well with Allyson and her health and eating. She's maintaining her weight on her own an eating pretty well most days! Thank you for your continued prayers and support!

Have a great Sunday!

Love,
Kristin

Monday, September 24, 2007 2:43 PM CDT

In just about 24-hours from now, we'll be landing in Orlando! We're all super excited about our trip to Florida... complete with two days at Disney World, three days in Tampa for Uncle Josh's wedding, and then back to the Nickelodeon Hotel and Resort in Orlando for two more nights...

Our bags are almost packed... our boarding passes have been printed... there's gas in the car... so we're just about ready to go!

Allyson is napping and Morgan is at school, of course, so I'd better seize this time to finish up "vacation prep". I'm sure we'll update you from time to time as the week allows!

Lots of love-
Kristin

Friday, September 21, 2007 11:01 AM CDT

GOOD NEWS!!!!!!!!!

Hello everyone and Happy Friday! It's raining here... something we haven't seen in a REALLY long time, so it's nice to see and hear and touch!

Yesterday's eye doctor appointment was much more positive than I had expected. Dr. Song was very personable and knowledgeable. He approached Allyson's eye issues with emphasis on the condition of Ectodermal Dysplasia. He explained that the "breakdown of cells" that leads to corneal scarring in her eyes is just like the "breakdown" on her skin that leads to eczema, rashes, inflammation, etc. Keeping her eyes lubricated is the KEY and he was not hesistant to prescribe several different drops/ointments for her to use on a regular basis. He said that corneal surgery/transplant was "absolutely not necessary" at this time. Her scarring is mild in his opinion (a "1" on a scale of 1-4). IF she needs surgery down the road (perhaps at school age), it would involve removing the scarring to allow new, good cells to grow back in it's place. He concurred that tinted glasses for indoors and oudoors would be helpful as well as wearing a hat. Dr. Song also said that as Allyson matures and her body changes that her eyes may improve and be less prone to the dryness and inflammation... similarly to her skin which was much more eczema-prone in her first two years than it has been this year. So, overall, he painted a much more positive picture than other doctors had. He definitely had the right approach and was much more familiar with the eye issues that go along with ED than previous opthalmalogists we've seen. When I told him we would be moving to Virginia, he said that the humidity should definitely help Allyson and alleviate some of the dryness issues. Hooray!

This afternoon Allyson will have an assessment with a specialist from the Jr. Blind Society. They are an early intervention program that works with children who are vision impaired in addition to having other developmental delays. The visual functionality assessment will help us to know how much of Allyson's vision is affected by the scarring. We know that she can see and identify colors, shapes, letters, numbers, etc., but she often puts her face very close to books when we're reading to her and also gets very close to a piece of paper when coloring. The Jr. Blind may recommend intervention services for Allyson and she'll receive "vision therapy" with a specialist in the home or they may think that her vision is not too impaired needing intervention and would make recommendations to us for things we can do at home to help her. The assessment will be done in several parts, so I'll update you when I have more info.

The OTHER good news is that Allyson is much happier at mealtime. WHY? Because I stopped feeding her! Seriously... I did! Here's the scoop...

We've beem experimenting since Sunday with self-feeding and table foods and Allyson has been much happier. I've greatly appreciated all the e-mails, cards, and notes from so many of you these past weeks. The feeding process has been MUCH harder than I've been able to put into words... (I'm glad the post-feeding picture I posted helped illustrate WHAT was going on!) Mark and I have tried all of Ben's techniques to get Allyson to resist less and nothing has worked. I was exhausted and miserable... as was Allyson. She was sleeping and cranky during the day and awake half the night which was creating more resistance to the feeding. We were in a vicious cycle that we needed to break. Allyson had also started resisting ME touching her in any way... baths, kisses, etc. because of what I had been "doing to her" regarding feeding. Mark and I agreed that we had tried long and hard enough and we needed to restore the emotional well-being in ALL of us! We weren't seeing any positive results at mealtime nor in her weight - it continues to yo-yo, so why continue the torture?

So far, Allyson has been eating well on her own. She loves eggs and yogurt for breakfast, pasta for lunch, and usually eats whatever Morgan does at dinner time. She's able to handle the food in her mouth well and swallow without any problems. She's continuing to drink from her sippy cup and fulfill her daily fluid needs on her own. She's sleeping through the night again and is happy, playful, and content during the day. It's a big relief for all of us...we're monitoring her weight and she hasn't lost since we started this "experiment." I haven't spoken to Ben yet because I wanted to have some "data" of how things are going before we talked. Even though we've strayed away from his protocol, Allyson still gained so much from going to the feeding clinic. Her ability to drink on her own was almost non-existent before the clinic and understanding mealtimes and sitting at the table to eat have been established because of the training we received from Ben. When we initially stopped the feedings, I felt like a failure because I knew that Allyson could eat without fighting... I had seen her do it at the clinic. But then I realized that we had tried everything Ben suggested and that maybe Allyson's continuous and stronger resistance was her way of telling us that she was ready to move on and eat "normally."

As always, your support through all of this has been amazing... keep praying that Allyson will be able to sustain herself and maintain her weight without being "force fed". We're prepared to supplement through her tube IF we have too... our trip to FL next week will be a big test of how Ally will adjust to a different kind of schedule and change of scenery. Prior to stopping the "Ben feedings" on Sunday, Mark and I had already discussed the possibility of having to feed Allyson through her g-tube while we were travelling. The feeding regimen was nearly unsustainable at home and would have been impossible to fully implement on the road. Our entire household has been lifted up this week as we transitioned to feeding normalcy! :-) Morgan no longer hides in her room at Ally's mealtime and has stopped asking "are you going to do that thing to Allyson that she hates?" We're eating dinner as a family and everyone is MUCH happier - especially Mommy and Allyson!

No good news on the house-selling front. We dropped the price by $25K this week and are having an open house on Sunday. We're starting to look into rental options both here and in NoVa. It's not what we planned to do, but the outlook is pretty gloomy for home sales. Who knows? Maybe this is what's meant to happen, right?

We had back-to-school night at Morgan's school last night. Her teacher said she was doing well and was very smart. In fact, she told the whole group of parents that all the GIRLS in the class were well-behaved and smart, but the BOYS weren't quite at the same level. Morgan also lost another tooth (the second one on the bottom) last week. She was hesitant to pull this one out herself, so she let it dangle for a couple of days and then it fell out on it's own when the straw of her thermos bumped it at school. She was THRILLED that she had lost a tooth a school!

Wishing you all a great weekend! We're heading to Orlando on Tuesday and then to Tampa next weekend for Uncle Josh's wedding and back to Orlando for the start of October! Wow! Is it really almost October?!?! Time for pumpkins and Christmas lights in Minnesota... right, Aimee?

Lots of love!
Kristin

Monday, September 10, 2007 3:46 PM CDT

Wasn’t it Paul Harvey who said, “and now for the rest of the story…”??? Here goes…

Allyson’s mealtimes continue to be a struggle. Mark has helped “block” her arms for the last two weekends. In between the weekends when I’m feeding Allyson on my own, her resistance is stronger than ever. We sent Ben a videotape of three meals from Labor Day weekend for him to review and offer advice. When I spoke with Ben last week, he said that we were doing everything “right”… my feeding technique was good and Mark was blocking perfectly. It was great to hear, however, I kind of wished he had found something at fault so that we could correct it and make the mealtimes better for all of us. Ben’s only suggestion was to slow down the pace and that might help lower Allyson’s resistance. She often indicates that her mouth hurts during and after the meal. Ben thought that maybe she was putting up such a fight because she was in pain. Slowing down the pace might not make her mouth hurt so much. He also said that he’s never had a client resist mealtime this much after going home… not even the older kids (12-13 year olds) who would be more likely to fight. It’s great that Allyson has such a strong personality, but I wish she didn’t show it so much when it comes to eating. So, we blocked again this weekend and I increased the interval between her bites. The meals lasted 5-7 minutes longer than usual, the net volume was lower, but Allyson’s resistance was slightly less. She only said that her mouth hurt after one meal, so I guess we gained a little progress there. This morning at breakfast I was “solo” again and the meal wasn’t quite as bad as last week’s trend, but she was definitely not “cured” of the arm flailing. I’ll talk with Ben this afternoon to brief him on the weekend and see if he has any other ideas for us to try. Keep praying for a miracle, because we’re getting close to the end of our rope and don’t want to have to feed Allyson through her g-tube again. It’s been almost twelve weeks since we’ve used the tube and I’d hate to go back to that after all the hard work, time, energy, money, etc. we’ve put into transitioning her OFF the tube!

On to “other stuff…”

The other BIG issue we’ve been tackling recently deals with Allyson’s eyes and her vision. She had two eye doctor appointments last couple of weeks – follow-ups from early June. I’ll recap all of her eye stuff at once since there’s a lot to tell. I may not have mentioned this in detail before, but just before we went to the feeding clinic in June, Allyson saw a corneal specialist because her regular ophthalmologist had detected some corneal scarring in her left eye. Most likely the scarring is a result of chronic dryness (associated with ectodermal dysplasia), which we have been “battling” for over a year now. The scarring affects her vision – blurriness and intensifies her sensitivity to light. She squints all the time to protect her eye from further damage and to block the light. She’s been regularly wearing sunglasses outdoors since the Spring, but is still sensitive to light inside, so we close the blinds in the house and make it as dark as possible during the day. We’ve recently started treating her discomfort with two anti-inflammatory medicines. The first we used (an ointment called TobraDex) contains steroids and works GREAT, but can only be used for a limited amount of time because of the steroids. One of her doctors prescribed non-steroidal anti-inflammatory drops (Xibrom) to use cyclically with the steroid ointment. We’re also still using Restasis drops in the am/pm to help Ally produce more tears which would help to naturally lubricate her eyes. In addition to the three prescriptions, the eye specialist suggested we use over-the-counter ointment/tears two more times during the day. So for those keeping track, that’s eight doses of “eye stuff” each day. The GOOD news is that this new course of treatment seems to be making Allyson more comfortable and she’s tolerating light better and not squinting as much. The BAD news is that both of her corneas are scarred (about 2/3 of the surface of each) and the best we can do (right now) is to make her comfortable and prevent further damage. We know that she can see things based on how she functions and plays at home and in therapy, but we do know that her vision is impaired significantly by the scarring and “how well” she can see is unknown. After a less than satisfying appointment with the cornea specialist associated with our local eye care team, I’m seeking a second opinion with the cornea specialist at Children’s Hospital. Allyson has an appointment on September 20th and I’m anxious to hear what this doctor (who is ranked #1 in his field) has to say about treating Allyson’s eyes. We’re also pursuing prescription glasses for Allyson that would tint automatically as she goes in and out of lighted areas. The frames have been ordered and we’ll meet with the optician when they come in. The last segment regarding Allyson’s eyes concerns her “visual functionality”. We are awaiting an assessment from the Junior Blind Society of America who offers intervention services for children who are visually impaired in addition to having other developmental disabilities. They will assess Allyson’s ability to function visually and make recommendations to us about things we can do or use at home or possibly offer weekly intervention services with a visual specialist to help maximize and preserve the vision she does have. Our concern is that if her eyes are hurting and she’s shielding them so much, then she won’t maximize her use of her eyes and over time, her brain will stop receiving its signals. As always, I’ll keep you posted on how things progress once we have these various appointments.

Now to FUN stuff…

The girls and I are continuing to enjoy having Mark home. We took a trip to the Santa Barbara Zoo on Saturday and had a great time! Morgan has enjoyed some special “dates” with Daddy and loves playing putt-putt, going out for ice cream, and reading stories in the Children’s area at Barnes & Noble. I even got to join them one afternoon while Connie was watching Allyson. Morgan is still VERY into her WebKinz animals and has introduced Mark to the wonderful virtual world. She’s also into her Littlest Pet Shop toys and has been saving her money to get a special addition to her set. For the last month, Morgan saved her tooth fairy money (a total of $9.50 (!!) from the tooth fairies of CA, VA, DC, and GA), her garage sale earnings (she sold 20 of her stuffed animals!), and her $5/week allowance in order to purchase The Biggest Littlest Pet Shop. We went to Toys R Us yesterday and she was squealing with delight as she handed over her cash. I think we now own EVERY item possible in the Littlest Pet Shop collection. We even packed up some “old” (i.e. not played with) toys to make room for the new stuff. Allyson also likes to play with the animals. Her favorite is an orange cat, which she’ll pick up and then say “hi” to Morgan who’s holding another pet. When Morgan says “hi” back, Allyson just says “hi” again or “okay.” That’s the extent of her pet conversational skills. Morgan willingly lets Ally play with her things and they’ll entertain themselves for awhile playing in Morgan’s room together.
Morgan loves 1st grade and is so excited to be back in school! Her teacher, Mrs. Reyes, seems great and I think Morgan likes her. She’s very disciplined - strict and formal - and shakes each child’s hand when they leave the classroom each afternoon. She expects them to answer questions in complete sentences and use her name at the end… i.e., “The answer is 5, Mrs. Reyes.” Morgan seems to enjoy the work they’re doing and especially likes drawing. Each day last week the students learned to draw a different kind of bird… a parrot, a blue jay, and an American Eagle. I asked Morgan how she did it and she explained that Mrs. Reyes would draw each part of the bird’s body on the chalkboard while the students copied it onto their paper. I don’t know if there will be birds again this week, but I’m anxious to see… One last piece of Morgan news… she has another loose tooth that will be coming out any day now. I wonder what she’ll want to spend THIS tooth fairly money on???

No news on the home selling front. Last weekend’s open house was attended by ONE person. Of course all the news about home loans, creditors, mortgage rates, the economy, etc. are not helping the situation. We did get news that we’ll be in California until December. Mark still doesn’t have his orders, but he’s been told that he’ll check out of his squadron in December and report to his new job in January. So, at least that gives us another month to sell and close. We’re going to look into renting options since that looks like the best-case scenario right now. We’ll probably rent in VA and then try to sell/buy a year from now. Keep us in your thoughts that all goes well (and as planned) with our transfer and move!

Hope everyone is doing well and enjoying the onset of fall…. Pumpkin carving and fall leaves will be here before we know it! Have a great week!

With love and gratitude-
Kristin

Tuesday, September 4, 2007 3:05 PM CDT

Good afternoon from this quiet house! Yes, I'm missing Morgan a little more than I thought I would as she's at school today... her first day of 1st grade and everything went off without a hitch! (Sorry to hear about your backpack incident, Aimee.) Morgan was so excited to go to school and was full of chatter in the car this morning. As you can see, I got around to posting new pictures yesterday, but the journal update has alluding me... and I thought I'd have MORE time to do things once Mark was home... ha ha! :-)

So, I'll attempt to bring you up-to-date on all the things that have been happening the last week ... starting with the most recent events...

Monday - Labor Day - Ran errands with the girls while Mark tackled a couple of "honey-dos" around the house. He got in some surf time at the beach in the late afternoon. We capped off the weekend by roasting marshmallows and making s'mores with Morgan on the last night of her summer vacation.

Sunday - Went to church where Mark was warmly welcomed home by the congregation and enjoyed our monthly potluck afterwards. Since our realtor was having an open house, we packed up all of our "feeding gear" and went to a park on base for Allyson's lunchtime feeding. Morgan played at the park (climbed trees, actually!) while Ally ate. Then we headed to the pool for a couple of hours. Morgan got to show off all of her new swimming strokes to Daddy who was very impressed. Allyson played in the baby pool independently for the first time and later napped on the chaise lounge. Morgan and I swam together in the big pool and Mark "studied" for his Fantasy Football draft which was later that night. (His team rocks, BTW... he got Peyton Manning.)

Saturday - Met our friends at Lakeshore for their Saturday craft time. Morgan and Brenna (Heather's daughter) made dinosaur stick puppets for themselves AND for their baby sisters. We all went to lunch afterwards at Baja Fresh. The Carstens are moving to Virginia Beach later this week, so it was one last get-together for the kiddos and Heather and I. We're looking forward to getting together some weekend after WE get to Virginia later this year.

Friday - Dentist appointments for me and the girls. Our regular dentist now shares her practice with another dentist and we saw Dr. Shah for the first time. Morgan was a little apprehensive about having her first set of x-rays done, but after a few minutes of "worrying", she did fine. Dr. Shah was pleased with Morgan's brushing and only recommended putting sealants on her permaneny molars that had just come in. I explained to Morgan that it was painless - kind of like putting nail polish on her teeth and we attempted to do the sealants. For some reason, Morgan freaked out soon after the process began and the dentist had to stop. We made an appointment for late in October and hopefully, Morgan won't be as scared then. Allyson had a quick check-up with the dentist as well and she recommended that we see a pediodontist for Allyson's dental care. We may wait to pursue this once we're in Virginia. Allyson's dental needs will be intensifying over the next 6 months as we make decisions about dentures and other treatments, so it might be best to deal with one set of specialists in our new location. My check-up was a little abnormal as well. After having just ONE cavity in my adult life (almost ten years ago!), Dr. Shah found FOUR cavities in my teeth during this check-up. I was shocked and speechless! I asked her if she was serious (and she was) and then asked her "how did this happen?" After answering her questions about my diet and health and any changes over the past six months, neither one of us could come up for an explanation to "why" these cavities appeared. I'm still in shock about it, but I'll get my fillings on the 21st. Can't wait... Now to the BEST part about Friday... Mark and I had our first "date night" in nearly 8 months! We went out to dinner at a great restaurant in Ventura and then to our favorite wine bar afterwards. Connie babysat the girls and had a great time with them!

The rest of the week will be updated later... time to wake Allyson for her lunchtime feeding before we pick Morgan up at school. Have a great day!

Kristin

Sunday, August 26, 2007 6:04 PM CDT

Home again, home again... safe and sound. We're all thrilled to be together again!

Morgan has been glued to Daddy's side/arms/legs/etc. and Allyson went right into his arms at the fly-in as well.

More pictures and updates to follow! We're having lots of family fun!

Thank you for your continued prayers and support!

Love you all-
Kristin, Mark, Morgan,and Allyson

Friday, August 24, 2007 11:30 PM CDT

So little time... so much to do...

Yes, we're in official countdown mode to Sunday morning. Mark called just a little while ago and before we hung up, I said "see you in about 40 hours!" Hard to believe that we're no longer counting months, weeks, or days...just hours!

Morgan is so excited and wants "no more days" to be here already. She and I did some last minute errands today - car wash, oil change, new underwear for Daddy, etc. while Allyson was here with Connie. We returned home for Allyson's lunch and then Connie took both girls to the mall with her. They played on the indoor playground and got Happy Meals for dinner. Allyson ate an entire cheeseburger and half of her apple dippers. Connie was thrilled (as was I) since she hadn't done that since BEFORE we went to the feeding clinic. Hooray! While they were gone, I reorganized the garage and got both cars back in (now that they've been nicely detailed!) for the first time in two months. I'm sure there is "shock and awe" on the faces of my Matus and Kelso parents right now!!! ;-)

As far as Ally's REAL meals go... we're still having some challenges. I'm still waiting for that magical day to arrive... the day where Allyson happily sits in her high chair and allows me to feed her without a fight. After having blockers for three days last week, I was hopeful that Allyson's bad habit of flailing her arms and shaking her head would be gone. No such luck, although on Monday, I was able to get her to hold her sippy cup in one hand, so I only had to deal with one hand flailing. Our meals went "okay" Mon-Wed, but things turned "rough" again on Thursday and through today. Mark tells me he's anxious to jump in and help with whatever he can. I have a feeling that he's going to be holding down Allyson's arms at mealtime whenever he's home for her feedings. She'll get the "Mommy-Daddy one-two-punch" and maybe that will do it!

Morgan and I treated ourselves to manicures and pedicures on Wednesday. We're all decked out with red nails to match our homecoming outfits. We also were able to squeeze in lunch at the mall before heading home to for Allyson's lunchtime feeding. While we were out, Morgan kept telling me how much she liked doing things with me. I know that she's had to sacrifice a lot over the past few weeks while I deal with Allyson's time-consuming and emotionally draining feeding schedule. It was nice that we could have some "girl time" just the two of us!

Thursday night marked the "last supper" for our weekly dinner club. We'll get together again in two weeks (with the guys joining us too) just before Heather moves to Virginia. It was a fun "last hoorah" and bittersweet too. We've come to rely on each other so much and have offered unending support to one another over the past few months. Although I know our friendships will remain, our get-togethers won't be the same anymore... and soon we'll all be relocating to different places... at least there's comfort in knowing that our paths will cross again one day!

As Mark said in the guestbook, I'm always thankful for the support you've given us throughout the life of this website... but especially these past 7+ months that Mark has been deployed... and most importantly during these last eight weeks since Allyson and I went to the feeding clinic. It's definitely been a bumpy ride recently and I appreciate all the support and prayers more than ever.

We're now down to just 36 hours... I'll post some family pictures as soon as I can after Mark's homecoming on Sunday. I'm sure it's going to be a whirlwind of a day!

Have a great weekend!

Love,
Kristin

Friday, August 17, 2007 9:53 AM CDT

Hello and Happy Friday!

We've been busily trying to get back into a normal routine and adjusting Allyson's feeding and sleeping schedule. Sorry for the delay in updating the journal...

I don't have a lot of time this morning, so I'll list bullet points of what we've been up to.

** Ally continues to fight me at mealtime. On Wed., I enlisted the help of Connie and my friends, Heather, Jenn and Ashley. I now have a 'blocker' at each meal for the next two days. They blockers job is to hold down Allyson's arms while I'm feeding her. Ben suggested doing this for three days straight and that should fix the problem. So far, so good... and I'm so greatful to my friends for being able and willing to help with this!

** Had a garage sale last Saturday and made $375! That was more than enough for Morgan and I to get our hair done on Wed. Morgan got 4 inches cut off her hair and looks so grown up with her shoulder-length locks. My color has been updated an I got a homecoming trim.

** Hosted our final wives' meeting of this deployment last weekend and finalized all of our homecoming plans. Also held elections and 'gave up' the office of president of the OSC which I'd held for almost three years.

** Nothing new on the sale of house. We've had open houses the past two Sundays and have another one planned this Sunday. Lots of lookers, but no offers as of yet. Keep your fingers crossed and say a prayer or two as well!

** Morgan has decided that she wants to stop taking karate classes. Her confidence has been shaken and she's been in tears at some point during every class over the past two weeks. She said that the challenge is too great and that she doesn't want to do it anymore. I plan to talk with Sensei about moving Morgan back to the younger class until she builds her confidence again, but I'm not sure that's the solution either. Stay tuned... Morgan still wants to do ballet and gymnastics after school starts, so we may just stick with that and revisit karate (if she's interested) after we move to VA

** Please say prayers for the families of the three E-2C aviators who crashed into the water off the coast of VA/NC on Wed. night. There were two instructors on board - a pilot and an NFO as well as a student pilot. Mark served with the NFO instructor when he was in his second tour with VAW-117 and we both knew him well. This is the first fatal E-2C crash since Mark's been an aviator and it's hit all of us very close to home.

** On a happier note, just NINE DAYS to go!! Morgan squeals with joy each morning when we count down and remove a link from her paper chain. (Thanks, Dani and Mackenzie!) We're all so excited for Mark to be home again.

Gotta run... it's time to wake Ally and give her breakfast!

Have a great weekend! Happy Birthday to Grandma K. and Aunt Merideth on Saturday and Happy EARLY Anniversary to Aunt Ashli and Uncle Tommy - have a fun night out tomorrow!

Love,
Kristin

Wednesday, August 8, 2007 7:23 PM CDT

MORGAN'S TOOTH IS OUT!!!!! SHE WIGGLED IT AND GENTLY PULLED IT OUT ALL BY HERSELF THIS AFTERNOON WHILE SHE WAS SITTING ON THE POTTY. I WAS SO SURPIRSED! THERE'S WAS MORE BLOOD THAN I EXPECTED, BUT IT DIDN'T EVEN BOTHER HER - SHE WAS SO THRILLED THAT HER TOOTH (NAMED "MALIA") WAS FINALLY OUT AFTER ALMOST TWO WEEKS OF WIGGLING!

WE'RE OFF TO A POST-DEPLOYMENT BRIEFING FOR THE SPOUSES IN A LITTLE BIT, BUT WANTED TO POST OUR BIG NEWS.

ALLYSON IS RESISTING ME A LITTLE BIT LESS AS OF TUESDAY. SHE ALSO POSTED HER FIRST WEIGHT GAIN THIS MORNING. A WHOPPING TWO OUNCES SINCE MONDAY! THIS IS HER FIRST GAIN IN OVER TWO WEEKS - HOORAY!

THANKS FOR YOUR LOVE AND SUPPORT-
KRISTIN

Sunday, August 5, 2007 0:14 AM CDT

Hello from a BALMY Southern California! Where did all this humidity come from???? I'm missing the air conditioning at the hotel in Sunnyvale....

We survived week 1 of feeding at home, but it hasn't been easy. It's been more challenging each day as Allyson has found better and different ways to fight me at meal time! Notice the bruises on her arm and face compliments of our feeding battles? She's still getting the volume and calories that she needs although her weight has dropped another 2 ounces as of Friday. My times have shortened a bit as well... I think that when she fights "harder", I work faster even though it's not pleasant for either of us! I'm hoping that as I reach 3 weeks of ME feeding her that Allyson will start to accept the process more and the whole experience will be more enjoyable for both of us. The process is still very time consuming as well. Even though I'm preparing a day's worth of meals the night before after the girls are asleep, each meal (food, drink, clean-up, weights/measures, etc.) takes close to 1 1/2 hours. It's a long time to be tied up with one activity. Morgan has certainly been a trooper (as usual!) with Allyson's new feeding regimen. She usually plays on the computer while I'm feeding Ally or is upstairs in her room or in my room... sometimes she'll make a comment like, "that seemed to go better... Ally wasn't crying as much as before." And she's right! I think she "gets it" as Teetay would say and I'm so blessed that she's such a great kid!

Even though feeding has consumed a large part of our days, we've managed to "get out" a little bit over the past few days. On Thursday, we went to Toys R Us where Morgan spent two giftcards she had received for her birthday. She got several play things for her Littlest Pet Shop animals and has now discovered their website as well as LIttlest Pet Shop "movies" on You Tube. There's plenty for her to do on the computer, that's for sure! We followed up our TRU visit with lunch at Chuck E Cheese before returning home for Allyson's lunch later in the afternoon. On Friday, Morgan requested that we take a trip to the mall. She KNEW that we weren't buying anything since she'd just gotten new toys the day before... her simple request was to go to the Hello Kitty store for a lollipop! We also played on the playground indoors and ran into several friends from Morgan's ballet class.

Today we got together with the squadron wives and painted signs for homecoming...just three weeks away! It was great to see the fellow wives again and making the signs reinforced how close we are to seeing our spouses again! Morgan asks me everyday, "how many days until Daddy comes home???" She's so excited and is hoping to have her loose tooth out by then to show him!

We'll go to church tomorrow morning and then visit with my friend on base at Mugu (and possibly go to the pool) while our realtor hosts an open house. Hopefully we'll get an offer in the next few days/weeks! Mark is getting nervous and wants to lower the price already, so keep your fingers crossed and say a prayer that we get a buyer SOON!

Hope you're all having a great weekend!

Much love,
Kristin

Wednesday, August 1, 2007 6:03 PM CDT

Hello everyone! I'm sure most of you "got the message" in Teetay's latest geustbook entry that the girls and I are not traveling east today. Because this first week of feeding Allyson is so critical and she's fighting me with more resistance each day, I decided to cancel our PA/VA trip for the Kelso family reunion and house-hunting. There's just too much at risk where Allyson is concerned and now is not the time to be "routineless"! We'll miss seeing everyone in both VA and PA, but I know our family and friends understand how important it is to follow through on implementing everything I learned at the clinic.

So, how are things going now that we're at week 1, day 4 of home feeding? The good news is that Allyson is taking more volume at each meal; the time it takes to feed her has decreased slightly (from 28-30 minutes to 22-24 minutes); and the spillage has remained about the same. The bad news is that Allyson is resisting me MORE with each meal and signing that her mouth hurts when we finish the meal. She's shaking her head "no" with each bite, rocking back and forth in the high chair, and kicking me. She's also lost a little weight - 2 ounces between Sunday and today which puts her just above 26 pounds. Even though she "yo-yo'd" while we were at the clinic, she's lost over 2 POUNDS since we started the tube-weaning process. Her weight is still "okay", but she needs to stop losing and start gaining soon! I've been in touch with Ben almost daily and he assures me that all of this is normal and that it will get better. Staying the course is the best thing to do... as hard as that is to endure physically and mentally.

Morgan and I were pretty sad when Teetay left this morning. I know that Morgan had a wonderful summer spending time with her and Geepie and feeling at home with them in Virginia. Having another set of hands to help me both at the clinic and the past few days at home has been great. Of course Teetay prepared some meals ahead of time so that I'll have something to eat the rest of this week! Morgan is playing with Isabella at our house right now and I had to "kick them off" the WebKinz website so that I could update the journal. I honor of our first day of "getting back to normal", Morgan and Allyson are the proud owners of two new WebKinz. Morgan chose a "google" (aka a platypus) and named her Sarah. Allyson chose a lion (because she's so brave??) and we named him "Lionel." Morgan introduced Isabella to the World of WebKinz and they've had a ball choosing items for Sarah's room (which is outside) and feeding and dressing her. I know they've missed playing together this summer!

We're off to karate in a half-hour. Morgan went to class yesterday and remembered most of her moves. Sensei had to remind her that she wasn't on vacation anymore and needed to "wake up her legs" and kick harder! Morgan just grinned and then whacked the punching bag.

Happy August! We're now IN the month that we'll be reuniting with Mark again. Hip, Hip, Hooray! Hope your month is off to a great start!

Love,
Kristin

Monday, July 30, 2007 0:22 AM CDT

Yes, WE'RE BACK!!!!!

Teetay and I have to keep reminding ourselves about what day it is and where we are... to say we've been on a whirlwind trip would be an understatement! All day yesterday during our drive from San Jose, CA to Port Hueneme, CA, Morgan asked, "Are we back in California yet?" I reminded her that California was a very big state and that she'd been back in CA for a week... just in a different part from where she lived!

So, we arrived back home last night after 7:30PM. I fed Allyson her dinner after 8:00PM and had to ask Mark to "call back" when he phoned from Hong Kong (we finally talked later after the girls were in bed). We were more than a little off schedule, and both girls went to bed after 10PM. Allyson didn't sleep well and wanted to sleep in Mommy's "big bed." I convinced her (sort of) that the twin bed in her room is a "big bed" and she eventually fell asleep there. Her crib will come down this week! Another milestone has passed... Anyway, Allyson's doing fairly well with eating at home. She still resists me feeding her at every meal, but I know this is just part of the process and she'll eventually "give in." I prepared all of her food for the first time this morning... using the blender and making a concoction of baby food, rice cereal, heavy whipping cream, and a "calorie booster" called Benecalorie. I started the preparations at 9:00AM and by the time I was done feeding her and giving her 4 oz. of milk and cleaning up and weighing and measuring EVERYTHING, it was 11:30AM. I know that I'll get better at this and it won't always take so long. The food preparation took awhile and the total meal/drink/clean-up takes a little over an hour. Fun stuff, huh?!?!? :-)

We spent the day visiting with our friends, the Huxmans, who live in Kansas and were in the area for the NFED conference. It was wonderful to visit with them and catch up after not seeing each other since last year's conference in St. Louis. Their middle son, Tyler, is Morgan's age and is affected with EEC Syndrome. Ryan is the oldest and is 8 years old and Andrew is Thomas' "future playmate" and is almost 7 months old. Morgan and the big boys had a ball. Morgan was "the hostess with the mostest" and showed them her room, her yard, her swingset. They played beautifully together! Allyson had fun with Andrew and brought him "baby toys" to play with while she helped teach him the "ABCs." We ended our day with a trip to the beach where the Huxman boys swam in the Pacific Ocean for the very first time - their first ocean experience ever! It was great to share that with them! When Mark and I plan our cross-country trip in the fall, we definitely hope to make a stop in Moundridge, KS to see our friends!

It's getting late and I'm determined to be in bed before midnight tonight! Tomorrow we'll get on track with a slightly earlier feeding schedule for Allyson. I'm aiming for meals at 8:30, 1:00. and 5:30. I'll be up "with the chickens" (we don't really have any chickens!) to prepare her food for the day and get ready for "week 1, day 1 at home."

Thank for your continued thoughts and prayers... it was hard work being at the clinic for 5 weeks, but now the REALLY hard work begins. Now that we've invested the time and money and I've received my training, it's all on me to make this work! Keep us in your prayers as I keep Allyson stable and on the right track with her eating!

Love to you all-
Kristin

Friday, July 27, 2007 8:39 PM CDT

Happy Friday! As we wrap up week 5, we have just 1 meal to go… Allyson and I have made great progress this week. She (and I) finally got a hang of the drink yesterday. On Wednesday, I felt like there would be “no way” she’d be drinking fluids by today. But, alas, she is and with gusto!!!! Allyson is drinking 4-5 ounces of apple juice after each meal. We found that this worked better than formula or even water, so juice we will drink! We had a few hiccups with giving her food throughout the week – the problems were on my end, but we didn’t figure that out until today. Ben worked with me at lunch and I’ve now finessed my technique. I’m hoping that I can continue with this newly adapted “spoon hold” and “scoop” at dinner tonight and we will graduate!!!!

We’re planning to head home on Saturday morning after I feed Allyson her breakfast. It’s about a 6-7 hour drive with stops and I’ll have to figure out a way to feed Ally “on the go”. We’re ALL looking forward to being back in Port Hueneme by dinnertime and sleeping in our own beds once again tomorrow night!

Thank you all for the continued support during the past five weeks. It’s been such an intense learning experience and one of the hardest things that I’ve ever had to do. Actually, it probably is THE HARDEST thing I’ve done ever! All the cards, gifts, messages, e-mails, guestbook postings, etc. have given me such strength and I’m greatly appreciative!

Mark is in port again this weekend and we’ve been able to talk a couple of times this week. He’s so excited to learn and see and DO what I’ve been doing. He’s anxious to be home for lots of reasons, but especially to see Allyson tube-free! Yesterday marked the ONE MONTH anniversary since Allyson had been fed through the tube. HOORAY!!!!

Hope you all have a great weekend. Please keep us in your thoughts as we transition to feeding at home and then get ready to travel back east on the 1st for Mark’s family’s reunion and Great Grandma Kelso’s 90th birthday celebration!

Love to you all,
Kristin

Tuesday, July 24, 2007 0:22 AM CDT

Greetings from week 5, day 1 of our time at the feeding clinic! It’s great having Teetay and Morgan here with us. Allyson and I have become super close/joined-at-the-hip/24-7 togetherness/etc. over the past four weeks and it’s fun to have them here to “share the love.” These sisters were especially happy to see each other again and Allyson is clearly enamored with her big sister. Morgan is Allyson’s biggest cheerleader and it’s clear how proud of her she is.

Allyson and I continue to make steady progress during our sessions with Ben. I’ve been feeding her for a week straight now. We’ve had to modify a few things based on some “hiccups” that occurred over the weekend. While I was earning my gold medal for speed at the end of the week, I was “stepping outside the lines” quite a bit and got “penalized” for my accuracy. So now I’ve slowed down the speed and we’re weighing the spillage and “mess” that’s left over after I feed Allyson. We’ve also added more volume to the initial amount I feed her to make up for what will inevitably be lost. It was a minor blow to my confidence, but all is well and we’re moving forward once again. After talking with Ben tonight, we hope to be home by the end of the week. While the food part has suffered a couple of setbacks (at least they feel like setbacks to ME) and I’m trying to get over that… the drink is going well. After doing the drink by myself for the last three sessions, I felt like I was finally “getting it” at dinnertime tonight. We’re going to play with the volume and presentation of food tomorrow and hopefully things will go smoothly.

Morgan and Teetay have observed several of the feedings, but both Allyson and I are little “out of sorts” as a result of their presence. We’ve gotten into such a routine with just the two of us at the clinic, that “extra” people – as supportive as they are – have shaken us out of our “groove”, so to speak…. So, they’re finding things to do on their own while we’re at the clinic and we’re still enjoying our time together in between.

Hope you all are having a great week! Hard to believe that July is almost over. Happy Birthday to Mark and his brother, Glenn, on Wednesday! We’ll be reuniting with Mark again just about a month after his birthday! Morgan and I are counting the days… Allyson is too… in her own way, since she can’t count that high yet!

Thank you for the continued support, thoughts, and prayers!

Love,
Kristin

Saturday, July 21, 2007 9:49 AM CDT

So the Olympic GOLD is in sight...

On Friday, my AVERAGE meal time was 10 min, 3 sec. I also prepared all of Allyson's food myself. Did I mention that ALL of the food prep instructions were given in Spanish? Seriously, Ben's assistant, Jessica, speaks very little English and taught me how to measure, calculate calories, and prepare Allyson's meals in Spanish! Good thing I took so many years of it in school... it's kind of like riding a bike... once you know how, you don't really forget. Verdad?

I'm SO excited to see Teetay and Morgan this afternoon. We'll pick them up in San Jose after Allyson has lunch. They'll probably get to watch Allyson's dinnertime meal, unless Morgan's too tired and would rather hang out at the hotel. They'll definitely go to the clinic on Sunday for all of Allyson's meals and we'll get some fun park-time in between.

We've had to go "back to the drawing board" with Allyson's drink protocol. The process that Ben had put in place for me wasn't working. So, yesterday, he gave her the drink at each meal with me observing. He's going to "tweak" it a little more at breakfast and then I'll take over at lunch. I hope this won't prolong our stay too much, but it may. The drink has been a continuous challenge and we want to make sure it's "right" before we go home!

Have a great weekend! I'm sure we'll have lots to report later today once Morgan is back "home" in California!!!!

Love,
Kristin

Friday, July 20, 2007 9:35 AM CDT

Hello! Well, after three full days of feeding Allyson under Ben’s supervision, we’re starting to see so more progress. Yesterday, at breakfast, Ben gave me some not-so-gentle guidance to move faster and I was able to feed Allyson her food in 17 minutes. However, I was exhausted and “spent” and couldn’t imagine going ANY faster than I just had! That had me a little discouraged because our goal is to be done in less than 15 minutes. So, as we headed into lunch, I still felt good about my technique, but not with my speed. Lunch was over 20 minutes, so again, I was bummed. Ben had simply observed me at lunch silently and I was “slow.” Finally, at dinner, he was encouraging me and calling out times (exaggerating) like I was in the freakin’ Olympics… well, it worked and Allyson was fed in twelve minutes!

We’re still working on the drink. We’re trying some new techniques as Allyson is quite resistance to me giving her “sips.” She doesn’t cry, but pushes down with her lower jaw and doesn’t close her mouth to swallow. Hopefully, you can envision how hard is would be to drink if you didn’t close your mouth! My best drink time yesterday was 15 minutes, but we need to get under 10 minutes.

I was asked yesterday by BOTH grandmothers, ‘why does the meal have to go so fast?” It was hard for me to explain “why” to them, so I asked Ben for a “good answer.” The main reason is that we’re training Allyson to eat a certain volume of food (in her case, 6.5 ounces) at the same rate that a “normal” child her age/size would eat. She can handle it… she’s just not used to being fed that fast. The speed also goes hand-in-hand with getting her understand what a certain volume feels like in her stomach and knowing what feeling FULL is. Finally, it’s “better” for the parent and child when you’re dealing with a challenging situation – crying, refusal, etc. – to get the ‘task’ over with as quickly as possible. As exhausting as it was, I felt 100% better finishing her meal in 12minutes vs. even 17 and definitely better than 20+minutes. She won’t always cry and a few months from now, 12minutes will seem like “nothing” to both of us. Hope that helped!

We’re going to work through the weekend, so we’ll see Ben for regular meals on Saturday and Sunday. He wants to keep the momentum going – as do I. Hopefully, we’ll be out of here by mid-week next week.

Tomorrow, Morgan and Teetay will fly into San Jose around 3PM. I CANNOT WAIT TO SEE THEM!!!!!!!

Off for day 5 of week 4… the end IS in sight! HOORAY!

Have a great weekend!

Love,
Kristin

Wednesday, July 18, 2007 9:46 AM CDT

Yesterday I got to feed Allyson at the clinic with Ben’s supervision…. Literally looking over my shoulder while I fed her. Breakfast went very well. He was impressed and elevated me to “hall of fame” status. Lunch went well too. My time was a little slower, but the meal was cleaner and Allyson didn’t resist much at all. Since I did so well at lunch, Ben wanted me to try offering her the following her meal at dinnertime. Earlier in the day, he had said that he probably wouldn’t train me on drinking until late Wed. or Thurs. Guess my overachieving ways paid off here! So, the meal went well again – Allyson fussed more than at lunch, but we got through it in a “good” amount of time. The drink wasn’t easy and she threw both of us for a loop. During previous sessions, she would resist OPENING her mouth. Last night, she was resisting CLOSING her mouth, so I had to deal with that with Ben’s guidance. Anyway, the entire meal was 39 minutes and the drink was faster than any I had done over the weekend… So, we’re making progress!

Things are moving quickly now… Still not sure when we’ll be home, but hopefully it will be by mid-week next week…

Thanks for keeping us all in your thoughts and prayers. We’re also thinking of and praying for the Pugh family following the passing of Uncle Loren’s mother, Vera, and for the McQuay family for John IV’s recovery and that his unborn baby brother will not be infected by his illness too.

More later this week… off for another day of full feedings by Mommy!

Love,
Kristin

Tuesday, July 17, 2007 0:28 AM CDT

Okay, okay… Teetay, Ashli, DeAnn, Aimee…. You guys were right. I was being too hard on myself! Ben gave me an “A” for my weekend performance! Hooray! He thought that I did great with the food and he wasn’t even expecting me to tackle the drink…. He was most impressed that I got through all 6 meals. He said that most parents would give up and throw in the towel after the first difficult feeding.

Hooray! Today I got to observed Ben feeding Allyson at lunch and dinner. On Tuesday, I’ll get to feed her at breakfast (food, not drink) with Ben watching me. He mentioned today that I have to have a “mock feeding” with HIM as the subject before I actually feed Allyson. I’m not sure how that will go, bit I’ll give it a try!

Thank you for all the encouraging words of support! I’m hoping to get a phone call from Mark in the morning so I can fill him in on everything that’s been going on!

Have a happy Tuesday! Glad to hear that Morgan is still having a great time with Teetay and Geep and her “Philly cousins” and a special playdate with Katherine Lutz (daughter of my high school friends, Beth and David) on Tuesday afternoon/evening. Can’t wait to see my BIG girl this weekend!!!!

Love,
Kristin

Sunday, July 15, 2007 11:40 PM CDT

I DID IT!!!! I DID IT!!!!! I REALLY, REALLY DID IT!!!!!!!


On Saturday, I survived my first "real" day of feeding Allyson by mouth and I DID IT!!!!! She got 1317.5 calories and 35.5 oz of food and drink. I have her another 8 oz. of water at bedtime (through the g-tube) - same as I had been each night with Ben feeding her. Eventually, we'll turn this bedtime water into 4 oz of water and 4 oz of Resource by mouth or some combination thereof. After calculating what she got by mouth, I had a realization about the Resource. I got Allyson to drink 13 oz. of Resource by mouth... an ounce MORE than I was giving her through the g-tube less than three weeks ago. THAT is amazing to me! :-) Hooray!!!! The meals weren't easy and she fought me quite a bit - crying, shaking her head, reaching out for me, etc. - but I stuck with it and we got through. Breakfast and lunch (including food and drink) each took a little over 30 minutes; dinner took almost 45 minutes. Ben usually does it in about 20 minutes and the "goal" is 15 minutes. So, I need to get faster, but at least I DID IT!!!!

We went to a new park near our hotel in the early afternoon and ran errands at Target before going out to dinner this evening. We got to sleep in this morning and didn't get up until almost 9AM. I had awakened earlier than that, but kept turning over and dozing off. It felt good to rest as much as I'd like and it was fun to snuggle with Allyson in the morning! Yes, she was in bed with me again, after awakening in the middle of the night.

So to celebrate, I took myself out to dinner on Saturday night BEFORE Ally's feeding (which was closer to 7PM, but that's okay - she napped late). Had a NY strip (the first steak I've had since Geep cooked for us on Father's Day... I was barely surviving!!!! I needed my MEAT!!!) and garlic mashed potatoes, vegetables, and a beer. Ate at a place called the FireHouse Grill and Brewery and we sat outside. Allyson "ordered" mac-n-cheese and ate about 4 bites. I was happy to treat myself! I deserved it, right???

Sunday’s meals started out “worse” than Saturday… actually, there was less resistance on Ally’s part, but the time took longer. I was not relaxed and uptight and I think she sensed that. I had the expectation that Sunday should go better than Saturday, and when it didn’t… I lost my patience. In the end, Sunday ended up being better in the volume and calories consumed. She got 1378 calories and 37 ounces of food and drink. Breakfast and lunch took close to 50 minutes each. Dinner was better at less than 40 minutes, so we ended the weekend on a good note. All in all, I’ll give myself a “B” overall. Broken down, that’s an “A” for volume consumed, a “B” for technique, and a “C” for time limits. Not too bad for a mom who hasn’t been “trained” yet!!!!

We also took in the Arts and Wine Festival in Los Altos this afternoon. I picked up a few artsy things, had lunch, listened to music and walked around. We only stayed a little over an hour so that we could stay on top of Allyson’s feeding schedule. We spent much of the day playing at the hotel and visited a new nearby park in the afternoon for some swinging time.

Hope everyone had a great weekend! Tomorrow begins week 4…

Love,
Kristin

Saturday, July 14, 2007 6:11 PM CDT

TWO MEALS DOWN... FOUR TO GO BEFORE THE WEEKEND IS OVER!

Things have gone well so far - about what I expected. Allyson has consumed 846.6 calories today. That is BY FAR the MOST I've EVER gotten her to eat by mouth and we still have dinner left!!! HOORAY! She's taking the pureed food pretty well. The drink is quite a struggle and I cut back on the drink at lunchtime and added more food. Her total volume and calories for each meal were about the same though. So far, I'd say I've been moderately successful!

Just thought I'd post a quick update on how everything was going... Thank you all for keeping me in your thoughts this weekend as I "go it alone" and do this!

Lots of love!
Kristin


Friday, July 13, 2007 3:21 PM CDT


Good afternoon! We've reached the end of week three and Allyson continues to make good progress. Yesterday, her drinking after the meal went VERY well for the first time. She didn't put up much of a fight with Ben, so it was great to see an ENTIRE meal that was almost ENTIRELY free of crying! Hooray! The other meals yesterday went similarly well.

Ben is working with Allyson again today at each meal. We've also introduced tooth-brushing after each meal and drink and Allyson isn't protesting too much. After today, Ben feels like he has all the "kinks" worked out and I should have a smooth transition when I start feeding Allyson on Monday. Finally!!!! She's gained back some of the weight she lost last week... for the past three days, her weight hasn't changed... just hovering at 27.75 pounds. We tried our best to get her back up to 28 pounds. She had 1982 calories on Tues. and a "record" 2085 on Wed., but no gains. That's okay. Her weight is fine and even if she loses again this weekend, she's not in any danger.

Speaking of the weekend... we're going to stay "in town" so I can focus on feeding Allyson at her scheduled mealtimes. Ben has prepared all the food ahead of time - through the blender with rice cereal added for extra calories. I bought a high chair yesterday which I'll use at the hotel and take home with us as well. It's the exact same chair that Allyson has been sitting in at the clinic, so hopefully, the transition will go smoothly! We'll miss seeing Rebecca, David, and Alina again, but know that we'll reunite again soon!

There is an Arts and Wine Festival in Los Altos this weekend, so we may check that out in between mealtimes. I'm also interested in taking Allyson to the Children's Museum in San Jose, so that may be another excursion. Otherwise, we'll lay low... sleep in (maybe!)... and enjoy not having to drive to the clinic three times a day.

Wishing you all a great weekend! Thank you for your continued support. I've gotten half a dozen letters and cards at the hotel this week and the encouraging words really brighten my day!

It may seem like what we're doing here is somewhat mundane and routine and even "boring", but it really is hard work. My attention is completely focused on Allyson and Ben while he's feeding her... examining the methods he's using to place food into her mouth and get her to take sips out of the cup. It's hard for me to put into words what the process "feels" like. Yes, we have our breaks in between where we go to the park or play back at the hotel. However, these are just "breathers" in between sessions and then we're ready to "work" again at the next meal.

Yes, it's monotonous - kind of like studying for a big exam where you read your notes over and over and over again until they're committed to memory. And when you've absorbed all the material you possibly can, you feel prepared for the exam, yet you end up making a B as your grade. Well, my "practice" test is this weekend... and the analogy differs in that the "test" isn't a piece of paper... it's a human being, Allyson.

I'll sign off on that note... our laundry is almost done drying and then we'll head to the clinic for 2PM lunch. Happy Friday the 13th!

Love,
Kristin

Wednesday, July 11, 2007 10:08 AM CDT

Hello from mid-week of week 3! The temps have cooled off this week – a few overcast days – and we’re enjoying our “time off” in between sessions! Hope this second week of July is going swimmingly for everyone. Sorry for the delay in updating… I’ve been having trouble connecting to the Internet for a couple of days – hopefully this update will post!

After the weekend, Allyson had lost almost a pound, so we’ve been trying to “bulk her up” this week. Yesterday she consumed a whopping 1982 calories!! I’m sure there will some weight gain when she steps on the scale this morning. Ben is now adding rice cereal to her food and putting everything through the blender to make a very smooth consistency. It’s hard to see Allyson going “back to the beginning” with all the blended food. In my mind, I felt like she had moved past this kind of food. What I understand now is that perhaps the textures and consistencies that she seemed to like and handle well were actually interfering with her ability to consume the volume that she’s needed to sustain herself. As I expected, this has been quite the learning experience already and we’re only half-way through!

Allyson continues to eat pretty well for Ben this week. I thought I’d start feeding her today, but she’s still exhibiting some negative behaviors, resistance (especially with drinking now), and fussiness with Ben. He wants to continue to work with her through the rest of this week and squelch out the rest of these behaviors before bringing me in. He says it will make it easier in the long run for HIM to deal with them, so I won’t have too. Of course, I was disappointed with this news, but I understand the reasoning behind it. We’ll probably stay at the clinic INTO week 5 (perhaps ALL of it). Ben feels like I might only need a week with Allyson before going home, but I’m not so sure… after all, he initially thought that HE’D only need a week with her too. So, I’m dealing with the reality of probably NOT going to the NFED conference and I’m “okay” with that.

Yesterday we took a drive up to Redwood City and met our friend, Dave Pearce, for lunch. Dave and I had dinner a couple of weeks ago. He and Mark were in the same squadron in San Diego ten years ago – he’s out of the Navy now and flies for JetBlue Airlines. We went to a park near his house where Allyson slid and swung (swang?) and then had lunch at his condo before he had to depart for a 6-day flying “week” out of Oakland. It was nice seeing another new area and Ally liked playing at a new park.

In the afternoon, we did some more exploring and discovered the cute downtown area of Sunnyvale. Every Wednesday, they close off the streets for a market and music festival, so we’re looking forward to checking that out after Allyson’s dinner tonight!

Glad to hear that Morgan is becoming quite the swimmer-girl. I can’t wait to see all that’s she’s learned when we’re together again in a few weeks. I sure do miss seeing her and hearing about all her activities. Talking on the phone is great, but it doesn’t make up for the real thing!

Love and hugs to all of you… thanks for keeping us in your thoughts and prayers ~

Kristin




Tuesday, July 10, 2007 7:10 PM CDT

We have ORDERS!!!! Virginia, here we come!!!!! HOORAY!

Mark will start his new assignment at Pentagon in late Nov. or early Dec. I don't have all the details of what he'll be doing (and maybe I WON'T know - ha ha!), but we're excited about our moving news.

It will be great to be SO close to Teetay, Geep, Ashli, TG, and Thomas and very close to Glenn, Merideth, and Spencer in Richmond, and not so far away from Grandma and Grandpa in North Carolina. I'm told that Morgan's face truly "lit up" when she got the news from Aunt Ashli this morning. Mark is looking forward to "free and frequent" babysitting and NOT sailing on a boat or flying a plane for awhile!

We'll do some preliminary house-hunting in August and hope to buy a hope in Burke or possibly Springfield. Of course, we need our CA house to sell first, so keep your fingers crossed that things will go smoothly in that regard.

Will update you later on Allyson's "week 3" progress. All is well. We're in between meals now and need to head back to the clinic for dinner soon. Hope everyone is having a great week!

Love,
Kristin

Monday, July 9, 2007 0:48 AM CDT

Hello! We’ve moved to our new hotel and it’s FABULOUS!!! The information is below. We have a separate bedroom with a door and king sized bed. The bathroom is huge – two sinks and long vanity. The living room has a sleeper sofa and chair with ottoman, large desk, TV w/ DVD player. There is small hallway, a kitchen with a full-size refrigerator, two-burner stove, microwave, dishwasher, sink with disposal, nice plates, glasses, cookware, utensils, etc. It really DOES feel like a “home away from home.”

Larkspur Landing
748 N. Mathilda Ave.
Sunnyvale, CA 94086
408-733-1212 ROOM 124 (Under Kristin Kelso)

We had another great visit with the Lacki’s in Oakland over the weekend. David’s birthday party was lots of fun. Allyson was the oldest of the 5 children that came to play. The kiddos had fun climbing in and out of the baby pool, splashing, and playing. They also raided the veggie tray – devouring sliced cucumbers, carrot sticks, and cherry tomatoes! It was hilarious to see all these small mouths bursting with tomato juice and seeds and pulp running down their chins. Allyson was in the mix of it all and ate AT LEAST four whole tomatoes herself! David, Rebecca, and I stayed up “too late” again… hanging out in their backyard around the fire pit table, drinking wine, and talking about all sorts of things. It was great to be with friends again. This morning we went to a nearby park and Allyson and Alina swung side-by-side and took turns on various slides and climbers. Allyson and I returned to Sunnyvale around 3:30 and got settled into the hotel. We made a grocery store run after Allyson’s supper of mac-n-cheese (photo above) and I picked up a pizza for dinner. I guess the mac-n-cheese wasn’t enough for Allyson because she ate almost 3 slices of pizza with me a couple of hours later!!!!

I didn’t push too much with the feeding/drinking this weekend. Ben suggested that I not push to where she’s agitated and might create a negative situation as we start week 3 on Monday. We want Allyson to be as calm and relaxed as possible once I'm part of the process. I’m not sure if I’ll start feeding Allyson at breakfast time or if we’ll wait until later in the day. It will all depend on how she responds Monday morning.

Hope everyone had a great weekend! I hope to catch up on my phone calls this week… so if you’ve left me a message recently, we’ll be talking soon!

Happy Monday and thank you for your continued support as we enter week 3 at the feeding clinic!

Love,
Kristin

Saturday, July 7, 2007 10:24 AM CDT

Greetings everyone! Week 2 has come to an end and Allyson is doing pretty well. Friday was a little "off". Allyson resisted and fussed quite a bit a breakfast time. However, she hadn't slept well Thursday night and was still tired in the morning, so that probably was the main reason for her fussiness. Lunch went well and dinner was little "off" as well - again due to tiredness, I think. Ben said "not to worry", but it still felt like a setback to me.

On Monday or Tuesday, I'll start working with Ben and feeding Allyson myself. He's confident that he's gotten the right combination of food and drink that will be our "prescription" for when we come home. Allyson will be fed 8-9 oz of pureed food/meal and will drink 6 oz. of formula afterwards. She'll consume about 500 calories at each meal which should help her continue to maintain (or gain) some weight. She had two days (Wed. and Thurs.) where she consumed 1850 calories each day! By Friday, she had gained 3/4 of a pound! Good news! Even with a high calorie diet, most kids experience some weight loss when they come off of the feeding tube. Allyson's weight only dipped 1/4 pound early last week and she's been gaining ever since. Ben was surprised and impressed by that! I think it has something to do with the progress we'd made with solid foods prior to coming to the clinic. At least, that's what I think... :-) My humble opinion, of course!

We're heading to Oakland this morning for another fun weekend with the Lacki Family. Today is David's birthday, so we'll be celebrating with a cook-out in his honor this afternoon. Allyson is excited to play with Alina again and meet some of her "baby friends" (as Morgan would call them).

On Sunday, we'll be checking into another hotel... Larkspur Landing in Sunnyvale, CA. We have a a suite with a separate bedroom, full kitchen, and FREE laundry, so Allyson and I will be making our "home away from home" there for the next couple of weeks. Ben told me yesterday that he thought we might need to stay 4-5 weeks. I'm hoping for 4 1/2 so that we can still make it to the NFED conference in Los Angeles at the end of the month. The conference is July 26-29 and we'd really like to be there! Time will tell... we can't rush the process and risk Allyson's rejection.

Have a great weekend and thank you for ALL the support!

Love,
Kristin

Thursday, July 5, 2007 9:40 AM CDT

Good morning! Hope everyone had a nice 4th of July. It was HOT, HOT, HOT here, but Allyson and I ventured out into town between her meals at the clinic. We attended a "home town" gathering in Los Altos and listened to the community band play patriotic music while I ate a hotdog and Allyson napped in her stroller. After a break at the hotel, we returned to our favorite park in the afternoon for some swinging time! Allyson really enjoys the swings and the park, so it's become our late afternoon routine. It was a little sad yesterday as I stood there pushing her higher and higher while families gathered in large groups all around us. The heat got to Ally after just 45 minutes and she started "pinking up", so we got in the car and drove around in the cool air conditioning. Last night I watched the Macy's fireworks on tv, then watched the D.C. fireworks and heard the National Symphony Orchestra, and finished the evening watching the San Jose fireworks. I bought fried chicken and potato salad at Safeway and "sort of" felt like I was celebrating the holiday!

Anyway... Allyson did a GREAT job at the clinic yesterday! She's now being fed with the lights off at each meal. She was having trouble sitting up straight and was hanging her head down which was making it difficult for Ben to feed her. With the lights off, she sits up straight and doesn't fuss at all. Her drinking is going well too! We started with 3 oz. of Resource (her formula) after her breakfast meal. Since she did so well, Ben tried 5 oz. at lunch and again at dinner. That's 13 oz. of Resource by MOUTH in one day which is one ounce MORE than she was getting through the g-tube 10 days ago. Allyson consumed a whopping 1850 calories yesterday! She had also gained a little weight (.14 lbs) as of yesterday morning after losing a few ounces since Friday. All in all... it was a great day for her! Let's hope today is the same!

We also got a call from Mark yesterday. His 4th of July was uneventful... just another work day where he flew over Afghanistan, stood duty on the ship, and managed the troops in the Maintenance department of his squadron. He's been flying 11 out of the last 12 days and not getting much rest in between. His ship should be leaving "the area" soon to start the transit back home. Hooray!

Thanks for your continued support. It's hard to believe that we've been here almost two weeks. The time is actually passing pretty quickly. We'll be changing hotels on Sunday after spending the weekend with Rebecca, David, and Alina in Oakland. It will be nice to have a change of scenery again!

Love,
Kristin

Wednesday, July 4, 2007 10:28 AM CDT

HAPPY 4TH OF JULY! IT'S A "WORK" DAY FOR US AND WE'RE HEADED TO THE CLINIC FOR WEEK 2, DAY 3 IN JUST A FEW MINUTES.

YESTERDAY WE HAD A BREAK THROUGH WHEN BEN TURNED OFF THE LIGHTS WHILE FEEDING ALLYSON. SHE STOPPED CRYING IMMEDIATELY AND WAS MUCH MORE RELAXED AND COMFORTABLE. SO WE'LL CONTINUE WITH THE 'IN THE DARK' FEEDINGS TODAY!

HOPE YOU ALL HAVE A HAPPY AND SAFE INDEPENDENCE DAY! THINKING OF MARK AND ALL THOSE WHO PROTECT OUR FREEDOM... WE LOVE YOU!

KRISTIN AND ALLYSON

Tuesday, July 3, 2007 9:57 AM CDT

Good morning! Here's an update from Monday... Week 2, Day 1...
Allyson ate pretty well. Not much of a setback this morning after having the weekend "off." Ben was impressed that I had even gotten Allyson to eat a little bit from me. He was glad that I didn't use the tube too.

Anyway, Allyson's breakfast feeding took over 30 minutes. It was by FAR the longest mealtime she's had. She wasn't really resisting him that much, just slow to swallow and even appeared to be falling asleep at times. Lunch went MUCH better. No crying at all and he even gave her 1 oz. of Resource (her hig calorie formula) to drink. He uses the cut-out cup (it's one we've tried before with her OTs at home) and "fed" her the drink. She didn't spit out any, and only protested because HE was holding the cup and pouring the sips into her mouth. Dinner went pretty well too and she drank 2oz. afterwards. He cut back the volume and calories of the baby food and is making it up with the Resource she drinks. All in all, not a bad day.

We went to the park this afternoon with Audrey and her daughter, Vivian.. Audrey is the mom that I first spoke with when I found Ben's clinic online. Vivian's case is extreme and she went through Ben's program in 6 weeks last summer. She got her g-tube surgically removed in May (it hadn't been "used" in almost a year). Just recently, she started rejecting her food and spitting up a lot. So, they're back for an "emergency session" and will be here for the next few weeks. Kind of scary... Vivian's story was so inspiring and she made so much progress with Ben last summer. It never occurred to me that there would be a setback where we'd have to come back to the clinic again. Now, I'm even MORE determined to make sure that doesn't happen in our case!

Anyway, that was our day... Allyson woke up last night around 1:30 AM and got in bed with me for the rest of the night. It seems like she's waking up every other night or so and I haven't been able to pinpoint the cause. She even ate some dinner with me before bedtime (after getting 1360 calories by mouth throughout the day.) She ate almost a whole package of Easy-Mac and TWO go-gurts! I thought for sure that she'd be full enough to sleep all night!

Here's something interesting I learned about Ben today. We were talking about Mark and being away from home for so long and never being able to get away from work when you're on the ship, etc. He said he could relate a little bit... He served in the Israeli Army for 2 1/2 years right when he got out of high school. Isn't that weird??? I never would have guessed that about him in a million years. Anyway, as the weeks go by and Ben and I have more time to talk about a variety of things, I'm sure I'll find out even more tidbits about him.

Off for day 2... more eating, more park time, and perhaps a nap in between!

Thanks for your support and to everyone who's sent me mail and gift cards and packages at the hotel. They're great surprises!

Love,
Kristin

Monday, July 2, 2007 9:44 AM CDT

Wow! Has a whole weekend gone by without me updating the journal???? So much to say, so let me get right to it!


Allyson and I spent the weekend in Oakland with Rebecca, David, and Alina. It was so relaxing to hang out with them and have grown-up conversations and ‘escape’ the monotony of our life at the clinic. Allyson and Alina (who’s 18-months old) had a great time playing together. They romped in the inflatable swimming pool – with their clothes on – Saturday afternoon after napping at the same time in the afternoon. We all had dinner together and after the little girls were tucked in bed, us grown-ups enjoyed wine “tasting” (or was is guzzling???) on the deck with views on San Francisco in the distance. I couldn’t have asked for better friends or a better way to unwind after week 1.

As far as feeding Allyson went… well… it wasn’t easy. I attempted to feed her at the hotel Saturday morning. I prepared the same food and quantity that bed had been feeding her all week. As soon as I sat Allyson in her chair, she started throwing a fit and reaching out for me. I tried unsuccessfully to get her take one bite and she screamed and climbed out of her seat. I gave up and felt deflated. We went to the lobby and enjoyed the buffet offered at the Hilton Garden Inn. Allyson ate eggs and cantaloupe and I vowed to try again later with the baby food. After arriving at Rebecca’s, we sat Alina and Allyson down for lunch. Ally ate some grapes and a cheese stick. About an hour later, she ate a gogurt. Once Alina was in bed, I tried feeding Allyson just one jar of baby food. I was successful! It wasn’t pretty and it wasn’t easy by any means, but we did it. Just 4 oz. versus the 10-12 oz. that Ben would get in her, but it was a victory nonetheless. Rebecca and I cheered for Allyson and then she hugged ME while we both cried…. It was a much-needed emotional release after such an intense week. Anyway, Allyson ate the same foods that Alina did at dinner and breakfast Sunday morning. I was able to get TWO jars of baby food into Allyson after lunch today. I also fed her another jar before bed tonight. I didn’t do as well as I had hoped and certainly didn’t fulfill her caloric needs with the baby food, but I guess if I HAD done as well as Ben, then we wouldn’t need to be here, right?

After returning from Oakland this afternoon, we got reacquainted with our hotel then met up with one of Mark’s former Navy buddies (who now flies for JetBlue and lives in the local area) for dinner. It was great seeing Dave again after losing touch for more than five years. We had a great Italian dinner. Allyson munched on some cheese pizza and “chatted” on her Minnie Mouse cell phone while we caught up on “who’s doing what” etc.

The Rally on Saturday was a HUGE success! Thank you to Ashli who coordinated every detail and executed another amazing event! I just finished looking at two online photo albums and I’m so sorry that Allyson and I missed out on the great activities. Thank you to everyone who attend and opened their pocketbooks for the NFED. With over 100 raffle and silent auction items to bid on, I don’t think anyone walked away empty handed…. Although this year’s rally “tally” may not be as high as previous years, the spirit of giving has been “alive and well” all year. Let’s not forget that WE ALL raised $4500 for the NFED in February during raffle ticket sales. Allyson also received close to $7000 for her medical fund in recent weeks to help us with the feeding clinic expenses. For those of you who weren’t at the Rally to hear Carol Agne, Director of Development, address the crowd of “ralliers”, she said… “Over the past three years, THIS FAMILY and ALL of YOU have raised close the $25000 for the NFED. That money paid for 10 sets of dentures for 10 kids who were able to start Kindergarten with teeth.” THAT is AWESOME, folks!

So, Congratulations on a job well done!!!!

Allyson and I are off to start week 2 at the clinic later this morning. If she takes her pureed food well, then Ben is going to start offering her something to drink by mouth following each meal. Then I can start reducing the amount of water that she gets through the g-tube during the day. Allyson DID drink 8 oz. of water Sunday morning while we were at Rebecca’s house. She took many sips over the course of two hours and consumed most of what was in her sippy cup. She usually wouldn’t drink more than 4 ounces in an entire day, so THAT was a huge success as well!

Have a great week and a Happy and SAFE 4th of July on Wednesday!

Hugs and lots of love to you all…

Kristin and Allyson

Friday, June 29, 2007 11:19 PM CDT

Happy Saturday and Happy end of June!

It's about 12 hours until the 3rd Annual Rally for Ally will begin! Can't wait to hear about the turn-out, the raffle winners, the silent auctioneers, and all the FUN that will be had as lots of $$$$$ (perhaps $11000?? $12000??) will be raised for the NFED. Allyson and I wish we could be there, but we're doing our "hard work" in Los Altos, CA and working towards getting Allyson off her g-tube for GOOD. Morgan will be our family representative and I'm sure she'll dazzle you with a dance, a smile, a story, or some other quirky Morgan-ism!

Allyson's first week at the clinic ended on a good note. Breakfast and lunch were a little rough today. She was refusing more than she had been earlier in the week and spitting out some of her food. Dinner went well and she only shook her head "no" one time and didn't spit anything out. She was actually so mellow that Ben thought she was falling asleep and had to tell her to “wake up”. Hooray! I was worried that after our successes mid-week, we had taken a few steps backwards.

Ben gave me baby food and special spoons to use this weekend. I’m going to do my best to get the “right” number of calories (1300) into Ally on Saturday and Sunday. We’re looking forward to our trip to Oakland and a day and night away from the hotel.

Have a great weekend! Thank you for your continued support for Allyson, our family, and all that we do! We wouldn’t have made it this far without you!

Love,
Kristin

Thursday, June 28, 2007 11:27 PM CDT

Hi all! Another pretty good and routine day here. Allyson did really well at breakfast and lunch, but had a little bit of a set-back at dinner. Ben said that's "typical." She still ate all of her meal, but it took a little longer and she shook her head and said, "no-no-no" several times and let food spill out of her mouth more than once. She was irritable after the meal as well, so I'm not sure if there was more to her rejection than just disinterest. It's nothing to worry about, just taking note of everything that happens.

We had a fun time (not!) doing laundry at the hotel between breakfast and lunch. Actually, our trips back and forth to the laundry room weren't too bad... We went back to the park between lunch and dinner this afternoon. Allyson met a little girl named Leah, who was almost the same age, and they played together for a long time... taking turns deciding whether they would slide or climb or swing. She's really enjoyed her time at the park this week! After Allyson's dinner tonight, we visited the weekly farmer's market in downtown Los Altos. I bought some strawberries and BBQ for dinner. The BBQ was from a place called "Amardillo Willy's Authentic Texas BBQ." It was pretty good, but Armadillo Willy has nothin' on Geep!

Tomorrow is our last day of sessions for week 1. We have the weekend "off," although I'll attempt to feed Allyson the same food and quantities that Ben has been this week. I really don't want to have to use the tube for feeding her over the weekend now that we've stopped using it for a few days. I'll keep track of her calories and volume and hopefully come close to what she's supposed to get. We'll be visiting our friends Rebecca, David, and Alina in Oakland overnight on Saturday. We'll all be thinking about everyone at the Rally and we'll do our own Rally dance in Oakland in her honor!

Happy Friday and have a great weekend!

Love,
Kristin

Wednesday, June 27, 2007 10:36 PM CDT

Another great day... Allyson ate well (11-12oz/feeding) and didn't cry at ALL today!

She also slept through the night last night without being tube-fed. Tonight is night #2 without using the tube. Allyson even ate "recreationally" in between her meals with Ben. She had 1/2 of a cheeseburger (meat, cheese, and top of the bun) between breakfast and lunch. She snacked on crackers and cheese puffs between lunch and dinner. She ate beans and rice AFTER dinner with me at a local Mexican restaurant. Then, she ate a go-gurt before bedtime.

She's sleeping soundly at 8:30. Ben has been really pleased with her progress. He'll start introducing liquids to her next week following her meals. Today I gave her 24 oz of water through her g-tube to keep her properly hydrated. The big challenge will be getting that much fluid into her orally. :-) I'll start feeding her at the beginning of week 3 and we should be coming home sometime during week 4.

Thanks for all the postings in the guestbook. It's great reading them at the end of our day!

More tomorrow... only 2 more days until the Rally. We'll be there in spirit! Thank you all in advance for your support!

Love,
Kristin

Wednesday, June 27, 2007 0:04 AM CDT

For the first time in 27 months and 5 days, Allyson is not being fed through her g-tube at bedtime. Woo-hoo!

She did GREAT today with her feedings. She ate a total of 1300 calories by mouth today and got 18 oz. of water through her g-tube. She fussed and cried a little bit at breakfast and lunch, but was happy at her dinnertime feeding. She willingly took Ben's hand as they walked into the feeding room. She didn't cry at all during her 7 1/2 minute "dinner" of prunes and chicken tetratzini puree. After the meal, she smiled and ran into my arms and gave me a big hug! It was great to see her content with the process and not fighting it anymore.

We explored some of Palo Alto today and spent some time at the Stanford Mall. We also hung out at the hotel this morning and Allyson took an early nap (as did I!). Last night, she woke up around 1:30 AM and got in bed with me for the rest of the night. Hopefully, she'll sleep through tonight and won't miss having that formula in her tummy at bedtime.

Thank you for your continued support. Let's pray that tomorrow is another great day!

Love,
Kristin

Monday, June 25, 2007 11:00 PM CDT

Hello! I know many of you have probably been checking the site HOURLY (Aimee!) waiting for my update about our first day at the clinic. Before I get to that, I just wanted to comment on the homepage photo. I posted this one to show you how much better Allyson's left eye is since she's been on antibiotic ointment. I'll do a full "eye update" one of these days, but the new oitnment has definitely helped minimize the constant squniting and extreme light sensitivity. Hope you see the difference too!

Okay, here's the long-awaited update...


It's 8:30PM and Allyson is sleeping soundly after her BIG first day at the clinic. It went pretty much like I expected. Ben fed her three times... baby food only and she was done with each mealtime in less than 10 minutes. The 9AM feeding was 9 oz. of sweet potatoes and chicken puree in 10 minutes. As Teetay mentioned, she was wearing a lot of it afterwards though and she cried and thrashed around quite a bit! Her hair was orange and she had sweet potatoes - literally - in her ears. :-) Now I understand why Ben asked me to bring a change of clothes for her. I probably should have had a change for myself after she ran into my arms stilled covered in baby food! Lunchtime was at 2PM - she ate 8 oz. of mixed cereal with apples (jar baby food) in 6 min. 42 sec. She didn't cry as much and I didn't have to change her afterwards. At dinner (6PM), she ate 8 oz. of bananas in 6 min. 32 sec. and behaved about the same as lunch. Some resistance and crying, but not horribly... more like whining and calling my name. At lunch and dinner, she voluntarily opened her mouth when Ben brought the spoon to her lips several times.

So, we weren't at the clinic nearly as much as I thought we would be... so much for the stash of books I brought with me! While the feeding is taking place, I'm able to see what's going on via the TV that's in the waiting room. Ben also played music during the mealtime and allowed Allyson to select the CD,, First, it was Barney, then Blue's Clues, then Baby Mozart. Anyway, she napped in between meals from 12-1:30 at the hotel and again 4:45-5:30 in the car. She was a little traumatized after each feeding and clung to me for a few minutes, but then was happy and played in the waiting room. There are tons of toys there and she was really comfortable with the surroundings by this afternoon. In fact, after the 2PM feeding we hung out at the clinic for almost two hours. I met a mom who lives here locally and brings her 3 1/2 year old to the clinic 3x/week. She also has a 19-month old who played with Allyson. I also met the family from Herndon, VA who travelled out here with their 21-month old for the intensive program. The mom (Mary) had e-mailed me a couple of weeks ago, so I knew they'd be here and that we'd have a lot in common. I found out today that Mary's husband (Mike) is a retired Air Force officer - an Electrical Engineer - and he also graduated from Oakton High School (mine and Mark's alma mater) in 1984. I'm sure we'll be seeing a lot more of each other in the coming weeks.

In between the feedings and nap time, I drove around and explored the area. I drove through Palo Alto (I was headed towards a mall, but had to detour because of a brush fire) and saw Stanford University and the big companies of the Silicon Valley. We walked around downtown Los Altos this morning and there were lots of cute shops and shady sidewalks. I had to resist the urge to shop - afterall, we're here for WORK and not play!!! There's plenty to do in the area, so I don't think we'll get bored. (Someone remind me that I just wrote that when it's three weeks from now and I'm pulling my hair out!!!)

All in all, it was a good day. IF you're wondering about WHY Allyson is eating baby food/purees since she's been eating so many textures and a variety of other foods lately, I'll try my best to explain... The overall objective is to get her daily requirement of calories into her orally. This week, Ben is trying to stabilize her by getting enough calories in her by mouth in the easiest way possible, i.e. the path of least resistance. Obviously, purees are easier to swallow and can be consumed more rapidly than other types of foods (like hotdogs or pizza). He also doesn't want her burning calories by having to chew and swallow foods that aren't pureed and therefore easy to consume. Once she's taking enough calories by mouth without any resistance, he'll move onto other types of foods. She will still probably eat "regular foods" ground up so that they're still easier to manage. I can continue to offer her regular food after her purees, but whatever she consumes outside her scheduled mealtimes is just "extra" and considered "recreational eating."

Today her total caloric intake was 880. She needs about 1100-1200/day so I'm only giving her 8 oz. (vs. 12 oz. normally) of her formula through her g-tube tonight to make up the difference. Ben felt like by tomorrow night, there would be NO tube feeding!

He was pleased with how she did today. He said that crying and resistance is normal. While I was watching the feeding on TV in the waiting room, I took some pictures of Allyson while Ben was feeding her and his assistant was helping to keep Allyson still in the high chair. There's one posted on the photos page. The process is hard to watch because it seems so traumatic to her. BUT... I have to keep focused on the END results and not the means by which we get there. Essentially, the process is basically powering through the meal, force feeding and shoving the food into her mouth without giving her much time to recover in between spoonfulls. The faster we can get through the meal, the easier (and overall, less traumatic) it will be.


Allyson has been in great spirits! She hasn't been fussy or clingy or out-of sorts at all. Maybe she's enjoying the change of scenery and having me all to herself. Who knows??? I just hope her good mood continues because we're having a lot of fun together!

Thank you for your thoughts and prayers today. This isn't going to be easy, but it's not completely overwelming either. I'm keeping my spirits high because of the support from all of you. I'll post another update tomorrow night and let you know how 'day 2' went.

Bye for now!!!

Love,
Kristin

Sunday, June 24, 2007 11:03 PM CDT

We're here in Mountain View, CA and settling into the Hilton Garden Inn! We'll meet with Ben Zimmerman for Allyson's first clinic mealtime at 9 AM Monday morning. She's sleeping soundly in the port-a-crib after needing about 15 minutes of back rubbing before she settled down to sleep. Our travels were uneventful. We made the 330 mile trip in a little under 6 1/2 hours. Allyson was great in the car and I only had to dislocate my right shoulder a couple of times when she needed some leg patting in the backseat! hee hee :-) Morgan usually takes care of that for me! :-)

We stopped for lunch at Wendy's and Allyson at the entire patty and cheese of a kid's meal cheeseburger as well as the top part of the bun. And she ate it quickly too - without much prodding on my part! Her accomplishment at lunchtime almost made me want to turn around and say "what feeding disorder?" "who needs this clinic?" She "wowed" me again at dinner. We went to the grocery store and picked up some provisions for our hotel room. Allyson had a picnic on the king-sized bed and ate 3/4 of a hotdog and almost a 1/2 cup of baked beans. She followed that with a go-gurt before bedtime. She was full of energy and happpy as can be! (She even let me snap some pictures with her SMILING!) I hope these successes will translate positively when we meet with Ben at the clinic tomorrow!

Thank you to everyone who has (and is) supporting us with donations, prayers, well wishes, etc. I don't know how to express how humbling it is to have SO many people loving us and cheering for Allyson and rallying behind her (and me) as we tackle her feeding issues once and for all. I receieved a VERY generous donation from the squadron spouses and playgroup moms last night and was moved to tears by their thoughtfulness. Thank you ALL for continuing this journey with us and for celebrating Allyson's successes with us!

I'll post an update tomorrow to let you know about the first day at the clinic. Please pray that Allyson sleeps well tonight. She was awake at 3:15 a.m. this morning and didn't go back to sleep until 7:30 a.m.! This mommy is pretty tired and needs some rest before the 'big day' tomorrow!

Have a great Monday!

Love,
Kristin

Friday, June 22, 2007 11:02 PM CDT

Greetings from a half-empty house in California... just Allyson and I remain and we'll be heading to Los Altos on Sunday morning. I got a call from Morgan a little while ago after she landed in Virginia. She's full of energy and happy to be going to Teetay's and Geep's house. Our farewell at the airport was teary earlier today and I got a HUGE hug from Morgan (meaning she pushed all her weight into me while I was squatting in front of her...) and I fell flat on my butt! THAT must have been quite a site for the other travellers at LAX! At least it gave us a chance to laugh in between our tears! Allyson and I had a lengthy drive home due to a stalled truck blocking a lane on PCH. I went 12 miles in one hour and finally made it home in 2 1/2 hours. As soon as we got home, Allyson and I had a meeting with her therapists and service coordinator to evaluate her service plan and set goals for the next six months. When THAT ended, I ate lunch (or whatever you call a sandwich at 5pm!) and we ran to the store to pick up some last minute necessities for our trip. Allyson was in bed early (thank goodness!) and I've been making our final preparations for our trip.

It's been a super busy week leading up to today... As Teetay posted, our house went up for sale yesterday! While I was signing the contract with the realtor, Allyson was having Speech Therapy and Morgan was having a playdate with her friend, Isabella, from across the street. Then we went to swimming lessons and to karate. While the end of the day was hectic, let me tell you about the beginning... While the cleaning crew was here, we went to a local park for Allyson's therapy session which lasted two hours! During the session, Teetay came back to the house to meet the glass guys who were replacing a broken window in the garage. After therapy, I took Morgan and Allyson to have lunch and play with their friends, Nicole and Anika... THEN we returned home for the activities already listed. Yes, we've kept up quite the frenetic pace this week. I thought Morgan's last week of school was busy with all the "to do" list items, but this week proved to be just as crazy. I'll probably be BORED living in a hotel for the next 3-4 weeks!

Thank you all for your prayers and support as we head to the clinic. I spoke with Ben, the psychologist, yesterday and he's confident that Allyson will progress smoothly in his program. He said that we may only need 2-3 weeks of therapy vs. 4 that we were anticipating. I've powered up Mark's "old" laptop which I'll have with me at the clinic so I can provide updates to you all. I can't express enough how much your support means to us!

Please keep John McQuay (John Quad) in your prayers as he recovers from brain surgery. After 5 days in the hospital (Children's Hospital in D.C.), he will be recovering at Teetay and Geep's house and will hopefully feel well enough to play with Morgan. I'm sure they'll be great company for one another!

The 3rd Annual Rally for Ally is a week from tomorrow - June 30th. If you'd like to attend or need additional info, please contact Ashli at ashliagmg@yahoo.com. Thank you, in advance, for your generous support as we hope to raise over $10000 for the NFED!

Love and hugs to everyone in Ally-Land!
Kristin

Sunday, June 17, 2007 0:30 AM CDT

I TOLD YOU WE WERE GOING TO BE VERY BUSY!!!!!

I'D BE LYING IF I SAID THAT I COULDN'T BELIEVE THAT ALMOST TWO WEEKS HAVE PASSED SINCE MY LAST UPDATE. SO MUCH GOING ON HERE AND UPDATING THE JOURNAL HAS TAKEN A BACK SEAT TO ALL THE OTHER ACTIVITIES WE'VE BEEN DOING. SINCE TEETAY HAS BEEN HERE A WEEK ALREADY AND SHE HASN'T EVEN UPDATED... YOU KNOW THINGS HAVE BEEN CRAZY!

HAPPY FATHER'S DAY TO ALL THE DADS IN ALLY-WORLD. WE'RE ESPECIALLY MINDFUL OF ALL THE DADS WHO AREN'T ABLE TO BE WITH THEIR FAMILIES ON THIS SPECIAL DAY - WE LOVE AND MISS YOU, MARK!

HAPPY BIRTHDAY TO MORGAN WHO TURNED 6 YEARS OLD ON SATURDAY! WHAT A FUN DAY WE HAD - LOTS OF PRESENTS AT HOME AND A CRAZY-WILD-ENERGY PACKED PARTY AT PUMP IT UP THIS AFTERNOON.

HAPPY GRADUATION AND LAST DAY OF SCHOOL TO MORGAN LAST WEEK! HER GRADUATION CEREMONY WAS TERRIFIC... FILLED WITH SONGS AND DANCES DELIVERED WITH FLAIR AND PERSONALITY BY 40 ADORABLE KINDERGARTENERS!

WE'VE GOTTEN TONS ACCOMPLISHED AROUND THE HOUSE SINCE THE ARRIVAL OF MY PARENTS AND IN-LAWS EARLIER THIS WEEK. THE HOUSE WILL GO UP FOR SALE IN A WEEK AND IT'S IN TIP-TOP SHAPE. WE'VE CLEANED, ORGANIZED, REPAIRED, STRAIGHTENED, CLEANED SOME MORE... ORGANIZED SOME MORE... ETC., ETC.

IT'S BEEN WONDERFUL HAVING SO MANY HELPFUL HANDS AROUND! MORGAN AND ALLYSON ARE LOVING THE EXTRA ATTENTION TOO. AUNT ASHLI AND THOMAS ARE ENJOYING THEMSELVES AS WELL AND THOMAS WAS A GREAT TRAVELLER AND HAS ADJUSTED WELL TO "LIFE" IN CALIFORNIA!

I WISH I COULD GO ON AND ON ABOUT EVERYTHING WE'VE BEEN UP TO... JUST TOO MUCH TO MENTION AND I'M TYPING THIS IN MOM AND DAD K'S 'BEDROOM' AND THEY'RE GETTING READY TO GO TO SLEEP.

THANK YOU FOR YOUR CONTINUED PRAYERS AND WELL WISHES AS WE HEAD TO THE FEEDING CLINIC ONE WEEK FROM TODAY. WE APPRECIATE ALL OF YOUR CONTINUED SUPPORT!

WITH LOVE,
KRISTIN

P.S. SINCE THE LAST WEEK HAS BEEN FOCUSED ON MORGAN AND HER ACCOMPLISHMENTS, I'M TAKING THE LIBERTY OF POSTING HER PICTURES ON THE WEBSITE. DON'T WORRY, THERE WILL BE PLENTY OF ALLYSON BACK UP SOON...

Tuesday, June 5, 2007 0:05 AM CDT

Hello and Happy June to everyone in Ally-World!

We've had a pretty good weekend, hope you have too. Morgan had her friend, Nicole, sleep over on Saturday night. This was the first time that Morgan has had a friend spend the night here. The girls did great! I also babysat Nicole’s little sister (and Allyson’s friend), Anika, for a couple of hours while their parents went out to dinner. Four little girls and one Kristin – no problem! They all ate dinner together and played well. I was glad to give Marketa and Bob and night out and they promised to return the favor after Mark comes home. I’m making my list of “paybacks” now… As far as the sleepover went, my biggest issue was trying to get Allyson to go to bed because she wanted to stay up and eat popcorn and watch "Fairytopia" with Morgan and Nicole. I finally got her into her crib, but it was awhile before she actually went to sleep. More on Allyson's "new" sleeping habits later...

We went to a birthday party Saturday afternoon (before the sleepover) and had a lot of fun. Allyson and Morgan jumped and slid on the inflatables at the party. Morgan also had karate class in the morning. She's now going to karate class 3-4 times a week and continues to improve each week. We could actually go everyday Tues-Sat if we wanted to, but that's a little too much "ki-ya" for me! Morgan is still enjoying the bigger kid class, although sometimes she gets “nervous” when there are a lot of kids there (close to 20) and some of the older boys (7-8 year olds) are punching hard. I don't blame her... it makes me a little nervous too! Although she's never paired with the older, bigger boys for sparring, their "enthusiasm" for the class can be somewhat intimidating!

Allyson had an appointment last Thursday with her eye doctor who specializes in lid/lash disorders. This was an earlier-than-scheduled follow-up because she's been closing her left eye a lot recently and is especially sensitive to the light in that eye. Even though she wears sunglasses outside, she still covers the left eye with her hand. I suspected that her eyelashes might be growing abnormally - i.e. in towards her eye vs. out - however, when the doctor examined her, he didn't see any lash abnormalities. His best guess is that her left eye is overly dry and therefore, she squints to preserve the little moisture that's there. He prescribed Restasis drops which help with tear production. Unfortunately, the drops need to be used regularly for 2-3 months before we'll know if they're working. So... we'll wait and see. They also burn going in (and they’re prescribed 2x/day), so that’s fun to deal with! We have another eye doctor appointment with Allyson's Ophthalmologist on Tuesday. He'll check her vision and determine if her astigmatism has worsened and may recommend corrective lenses if necessary. I'll also speak with him about the light sensitivity and see if we can get some 'dark shades' for Ally's little eyes.

Allyson has been displaying some unsual sleep patterns over the past week or so. She's waking up in the middle of the night and staying awake for 2-3 hours. She's not fussy as long as I take her out of her crib - she just wants to play and be near me. Not MY idea of fun at 2:00 AM! One night last week, I put Allyson back in her crib after 2 hours of trying 'everything' and decided to let her cry it out. I closed her door and laid down to "wait." In less than FIVE minutes, Allyson was at my bedside! Yes, that's right... she climbed out of her crib AND opened the door to her room! Two 'firsts' in the same night!!! So, now I've adjusted her feeding time and I'm feeding her around 10 PM once she's fast asleep. She's been fighting me at bedtime and even climbed out of her crib while I was still in the room on Saturday night. Ah, this is yet another reason to get rid of the feeding tube so that we can move her out of the crib! The trials and tribulations of an almost 2 1/2 year old... I'll be sure to keep you posted on all her latest feats!

I spoke with Mark on Thursday (this was before the climbing/opening night, so he heard about that via e-mail!). Anyway. Mark surprised me with a call to my cell phone while Allyson and I were on the way to her doctor’s appointment. We hadn’t spoken in a month, so it was great to talk with him – albeit for just 12 minutes! He’s doing well and MORE than ready to come home! He just took over as the Maintenance Officer for the squadron, so he’s been busy learning his new job. It’s the largest department in the squadron – he manages over 100 people which include the majority of the enlisted personnel in the squadron. His ship is scheduled to be in port again in a few days, so we’ll be able to catch up then. In case anyone hasn’t been keeping count like I have… Mark’s been gone 136 days and there are just 82 days left until homecoming! Morgan is counting down the days using a paper chain (which started with 100 links) made for her by Dani’s daughter, Mackenzie! It’s been fun tearing off the links every morning!

We have a busy couple of weeks ahead. Teetay arrives on Saturday and will help me get the house organized and ready to put on the market near the first of July. Grandma and Grandpa Kelso arrive a week from Tuesday. Geep and Aunt Ashli and Thomas (this was a surprise TODAY when Ashli told me she had booked her flight!) are flying in Wed. the 13th. Morgan has her Kindergarten graduation on June 14th, we’re hosting an end-of-school/meet and greet barbecue on the 15th, and Morgan’s 6th birthday celebration with 25 of her closest friends is on June 16th… followed by Father’s Day on the 17th. Oh, and let’s not forget the Feeding Clinic which we’ll begin a week after that. We’re also DAILY starting swimming lessons for both Morgan and Allyson on June 11th. In the voice of Chandler Bing, “Could we BE any busier???”

It’s a fun time of year! I’m sure many of you with school-aged kids are facing similar agendas in the coming weeks. Enjoy this time and savor as much as you can!

Thank you, as always, for continuing this journey with us! It’s definitely going to be an eventful summer!

Love,
Kristin

Saturday, May 26, 2007 7:19 PM CDT

HAPPY MEMORIAL DAY WEEKEND!!!! Hope everyone is having a fun and safe holiday weekend and let’s not forget those who have served our country and all those who are currently serving… the real purpose of this holiday! We have a pretty low-key weekend ahead, but before I get to that, I’ll backtrack a week and a half and update you on all the things we’ve been up to. I may not be updating the journal as often as I used to, but I’ll try to make ‘the read’ worth your while when I do! :-)

Let's go back to Thursday, May 17th. That's the day I met with the Laird family. You may remember seeing Sarah’s entry in Allyson’s guestbook a few months ago. Clint and Sarah are missionaries who were visiting family and friends in CA before heading to Volgograd, Russia with their two daughters (Charlotte who will be 2 years old in June and has EEC) and Nila who is 2 months old (she’s 4 days younger than Thomas). After they found Allyson's website, we exchanged e-mails and planned to meet while they were here this Spring. So, last Thursday, they came to the house and spent about 4 hours with us. Allyson and Charlotte played pretty well together. Although they’re just six months apart in age, Charlotte is a LOT smaller - shorter than Ally and only weighs 20 lbs. (Allyson weighs 28 lbs). She never had a g-tube or feeding problems - just gains weight slowly. Charlotte didn't have her lip repair until she was 7 months old because she didn't weigh 10 lbs yet. Her palate repair was done late as well (at 19 months) and she just had hand surgery (both hands - three fingers on each - right hand had ring and pinky fused like Ally's left and her left hand had ring and pinky webbed). Anyway, it was cool to meet and talk with them. They had a lot of questions for me since Allyson has had different (and more) surgeries than Charlotte. I was amazed how well Charlotte was doing considering she's never had OT or PT or Speech. Her speech is actually BETTER than Allyson's. It confirmed what I've suspected... that Allyson's speech issues are less cleft-related and more feeding (i.e. not eating orally for so long) related. Deborah (our Speech Therapist) came for Allyson's speech session while the Lairds were here and answered their questions and offered some advice regarding Charlotte’s development. With them going to Russia, they won't have accesses to all the services that we do. Their plan is to return to the states (Chicago's Shriners Hospital is where they've seen doctors) annually for craniofacial/orthopedic team appts. Other than that... they're on their own. If you’d like to learn more about the Lairds and their mission work, please visit their website at http://www.csmissions.com

Last weekend, we were pretty busy. We had our spouse’s meeting on Saturday and surprised Susan with her "C.O.W" ( for the new Commanding Officer’s Wife) party. She seemed to have a good time! We started talking about homecoming and spent a good amount of time brainstorming and planning which was exciting. I took Morgan and Allyson’s pjs and put them to bed at Heather’s so I could stay after the meeting/party and hang out with my best girlfriends. This is the same group that I have dinner with every Thursday night. Our dinners are fun and a good way to unwind and have some adult conversation that's not entirely centered around our kids (only 2 of us out of 5 in this group have children)!

On Sunday we went to the Strawberry festival – it was pretty crowded (the newspaper estimated Sunday’s attendance at 40,000) – but we arrived early before the lines got too long. Morgan went on a bunch of rides - even some scarier ones that surprised me. We met up with several friends who have kids the same age. After the rides, facepainting, and lunch, it was time to come home – 4 ½ hours of "festivaling" was plenty! Unfortunately, there was a tie-up in the parking lot and I sat in the same place for an HOUR trying to get out! Finally, the police opened a 'back gate' and we started moving... it was after 4pm before we got home. Luckily Morgan was asleep most of the time and Allyson (who slept for 1 1/2 hours at the fair) was fairly content as long as I was giving her gum to chew! (desperate times call for desperate measures, right?)

This past week has been pretty routine. I've started getting back into my gym routine and worked out Monday morning and then went to Yoga on Tues. and Thurs nights. I really like the Yoga – it’s relaxing and a good workout too! When I started, I didn’t know I would like it as much as I do. Allyson had her regular therapy sessions throughout the week. I had a couple of doctor’s appointments. Connie took care of Allyson on Monday while I went for my very first mammogram. Boy, that was FUN! Actually it wasn’t bad at all… just made me feel like I had crossed over into another ‘era’ of my life like I’m middle-aged or something! Afterwards, I went shopping for Morgan’s birthday presents and then took her to see Shrek the Third. Very cute movie and almost as funny as the first two! Yesterday, I had a dermatologist appt and had a bothersome mole removed from my neck. It wasn’t suspicious, it just bothered me, so I had it cut off. I’m a little sore today, but recovering fine from my “minor surgery” (those were the doctor’s words!). Of course I couldn’t help thinking about Allyson when I was being numbed up and cauterized. No sweat for me, especially in light of what she’s been through!

Newflash from the Spelling Pro…Morgan got a 9 out of 10 on her spelling test this week - the first time she hasn't gotten a perfect score. She wasn't devastated (I thought she might be) and happily showed me her paper with a 9/10 at the top! She was worried that I would be mad at her, but of course I wasn't. She made a "common" mistake and wrote one of her letters backwards. The word she missed was "drive" and she wrote it as "brive". Oh well! It's probably a good thing to miss one here and there, right? There's no test this week since Monday is a holiday. It will be interesting to see if she gets nervous about being “perfect” for the next one.

So that brings you up to date…Today we all slept in – Morgan didn’t awaken me until 8:00 AM!!! We had a leisurely morning since karate was canclled this weekend. Morgan suggested we go to the Children’s Museum so we headed out around 11:30. The girls played and explored at the museum and then we went out to lunch and then out for ice cream. Allyson has been sleeping soundly for over 2 hours and Morgan is resting while watching “Naked Brothers Band.” Tomorrow we'll go to church - I'm working the nursery - and then at 4 pm, we have a BBQ for the playgroup kids/moms/dads who are around, etc. Monday - no school for Morgan... we may go to the beach for a little while in morning depending on the weather. Who knows? I guess we'll just play it by ear. The weather isn’t supposed to be that great this weekend, so I don’t know if the beach will be in our plans or not!

One last note about how Allyson’s feeding lately. It's hard to believe that we’re headed to the feeding clinic 4 weeks from today. Thank you to everyone who’s offered to help us with expenses and those who have made donations to Ally’s medical fund. We appreciate your generosity! In preparation for the clinic, I’m trying to cut back on Allyson’s g-tube feeding while increasing her oral feeding. Over the past few weeks, I've gone from 24 to 16 to 12 ounces of formula per day through the g-tube. Now that she's only getting 12 oz at night, she's definitely eating more during the day. She's eating hotdogs, pizza, chicken, ground beef and vegetables like broccoli, peas and corn. She also loves blueberries and blackberries although I think they're the cause of a bad diaper rash that she's had on and off for 3 weeks. I've already been through two tubes of Nystatin (prescription) cream because none of the regular diaper rash stuff would work. Anyway, she's also drinking more - close to 8 oz/day of either Resource for Kids (her high calorie formula) or yogurt drinks. I found a strawberry smoothie drink that Yoplait makes that has 220 cal in an 8 oz bottle. Not bad, huh? I haven't been counting precisely, but I think she's taking about 500 cal/day by mouth. It's still hard to get her to eat 3 meals a day with her sleep and nap routine and she's still not hungry when she wakes up. We still have to work through that issue... Dinner is usually the best meal and she pretty much eats whatever Morgan does for dinner and they sit at the table together. I know that Mark would be shocked to see that (so much has changed since he’s been gone)... it almost seems "normal"! I’ve been in touch with the clinic director and he’s happy with how Allyson has progressed and already moved away from some tube feeding. We hope that this latest feeding trend will serve as a good foundation for when we start the clinic. Please continue to keep Allyson in your prayers as we make this HUGE transition! When I changed her feeding tube last week (she gets a new button inserted in her stomach every three months), I thought that this might be the LAST time I’ll ever have to do this! How amazing would that be??

Again, enjoy your weekend and thank you for continuing to follow this great journey with us! Lots of love to you all!

Kristin

Tuesday, May 22, 2007 3:10 PM CDT

Yes, I know... it's almost a week until Memorial Day, but at the rate I'm updating the journal, I figured I'd get a jump start with this picture and homepage!

Updating the photos page now...

More later...

Kristin

Saturday, May 12, 2007 11:33 PM CDT

HAPPY MOTHER'S DAY, EVERYONE!!!!!

As I write this... Morgan is at her very FIRST sleepover at her friend, Nicole's (from ballet), house. I think I'm more nervous about it than she was... I keep waiting for the phone to ring... We had a long talk before I left her at Nicole's and she said she was "ready" to stay over at her friend's house. I'm planning to pick her up at 9:00 AM unless Nicole's parents call me before them. This isn't a neighbor, so that means waking Allyson and driving in the night if I need too. Let's hope that MY Mother's Day doesn't begin like that!

I know I owe you a MAJOR journal update, so I'll start with today and work backwards...

We attended a lovely luncheon this morning on base at Point Mugu. Our local spouses' group called Team Hawkeye prepared a wonderful meal for all the moms who are without their spouses this Mother's Day. The kids were fed and entertained outside while the moms enjoyed a quiet luncheon filled with adult conversation. It was quite a treat! Afterwards, we headed to Ventura where Morgan's ballet class was performing during the annual Children's Cultural Festival. We stayed for several exhibits after the performance. Then we joined Nicole's family for dinner and had another great meal. I've gotten to know Marketa (Nicole's mom) over the past year as we've hung out on the playground with our little girls (Allyson and Anika are the same age) while our big girls had class. Marketa is also the yoga instructor at my gym and I try to attend her class on Tues/Thurs evenings as often as I can. We all had a nice time at dinner - some of their other friends joined us. Nicole and Morgan were begging for a sleepover and I said "let's give it a try."

On Friday, Connie took care of Allyson for most of the day. I treated myself to an early Mother's Day gift and indulged in one of my favorite activities... sitting at the beach and reading a book! It was a sunny day, but quite windy. I managed to get cozy lying on a blanket on top of the sand and fell asleep for a little while. Now, I have a nicely sunburned back to show for my efforts! Like they say, "no pain, no gain." I took Morgan to the beach after school for about an hour. I stayed covered then as we built sandcastles and she jumped in the waves.

On Thursday night, I had a couple of girlfriends over here for dinner. I grilled filet mignon for us (yes, I'm my father's daughter) and we drank wine and had a great time as well. Morgan and Allyson played well and had their own "dinner party" at the kitchen table while the grown-ups sat in the dining room.

Last Wednesday, I hosted playgroup at our house. It was a relatively small turn-out - only 5 or 6 kids - so the moms actually had a chance to carry on conversations instead of just playing referee or chasing after children. Allyson was pretty good at sharing her toys and her space. When she started to get tired, she waved bye-bye to noone in particular. I asked her if she wanted to go "bye-bye" and she said "no." I asked her if she wanted all the people to go "bye-bye" and she definitively nodded "yes." We all got a good laugh out of that one... and nobody left until later!

We played outside and enjoyed the inflatable swimming pool earlier in the week when temps were in the 80s. Now that it's cooled down again, the swimming pool will have to be put aside for alittle bit.

As you'll see on the next page, Morgan received her new karate belt last week. It's the "Camo Belt" and she's one of the highest ranked belts in her class. She's also enjoying the 6-8 year old class and is already improving her skills with the additional challenge it's offered her.

Allyson is saying more and more words everyday. She now can say her own name "a-yee" and has also said "up-side-down" when she wants me to flip her over. With respect to her shoe fetish, Allyson can also say "flip flops" to let me know which shoes she or I or Morgan should be wearing. She DEFINITELY has an opinion not only about the shoes SHE wears, but what WE wear as well.

Many of you might have seen Mark on the news Friday night. Vice President Cheney was on the USS Stennis recently and Mark was in camera shot of the VP. Morgan and I recorded the NBC Nightly News last night and when we watched it back, we thought we saw Mark a couple of times. Morgan was sure that she saw Daddy, so I just went with it... if you know what I mean!

Hope all the Mom's have a terrific Mother's Day! After I pick Morgan up in the morning (vs. tonight - hopefully!), we'll be heading to church. Our afternoon plans are up in the air... we've been invited to join Connie and her friends for dinner out, but we may hang around here instead. Whatever the case, I know I'll be happy just being with my two favorite girls!

Love and hugs all around~
Kristin

Monday, May 7, 2007 1:05 AM CDT

Hi all! It's late and I'm not going to write a journal update right now, but I wanted to post some new family pictures. Of course, the main attraction, Allyson, is here on the homepage and the rest of us are on the photos page.

Hope everyone had a happy MAY weekend! I'll post a real update when I can...

Love,
Kristin

Friday, April 27, 2007 11:57 PM CDT

Hello there! It's been a week since my last update. We had a great time last weekend with Grandma and Grandpa despite some rainy weather. Morgan and Allyson both enjoyed spending time alone with them and I had fun on my outings with my friends.

This week has been busy with several therapy make-up sessions from when we were away after Easter. Allyson has had 8 sessions this week, totalling 10 hours oh therapy. Grandma has been helping out as well with the sessions which is a welcomed relief to me. Yesterday, I went shopping in the morning after dropping Morgan off at school and she worked with Allyson and Nancy. THAT was a nice break! I didn't have to worry about coming home at a certain time or picking Morgan up at school... a very nice and relaxing change of pace for me!

We (well, mostly Mom K.- aka Consuela) have also done some spring cleaning inside and outside the house. I have a beautiful weed-free, dead leaf-free garden on the back patio thanks to Mom K's back-breaking work. I also have glistening, streak-free windows AND a mostly clean and organized garage. (Teetay - aka Pilar - will be most impressed by THAT one!!!!) I've sorted through the girls' clothes and swapped out winter for summer in the drawers. Allyson has TONS of 2T spring/summer outfits that are hand-me-downs from Morgan. I also have a couple of tubs of clothes to hand down to my friend, Heather, for her daughters who are 3 and 6 months. Yes, I feel a sense of accomplishment this week! :-)

Morgan received ANOTHER 10/10 on her spelling test last Monday. She's STILL loving school and tells us daily about the work she does and mostly about the dance/song preparations that they're making for her Kindergarten graduation in June. All the grandparents will be on hand for that... Morgan's goal is to learn her dance steps and graduate... MY goal is to keep the garage clean and the garden "tended" between now and then. I wonder who will be more successful?!??!

One of the highlights of this week was having another videoteleconference with Mark. Grandma joined us girls in talking with Mark on Tuesday night. Morgan dominated the conversation, of course, but we were all happy to talk with him! Mark seemed thrilled to be talking with us as well. I'm so glad that his mom could SEE and HEAR him too while she's visiting!

Tomorrow is supposed to be a beautiful, summer-like day! Morgan has a karate belt test in the morning. We may also go to the beach for a little while afterwards depending on Allyson's temperament. In the late afternoon, I'll be 'departing' for the spouses' half-way celebration (even though it's not quite half-way through the deployment...). We're going on a progressive dinner via a water taxi around Channel Islands Harbor. I'm really looking forward to another night out with my friends and Grandma will enjoy spending her last night with her favorite little girls before departing on Sunday.

Hope you all are having a wonderful end of April weekend! Happy Birthday to Aunt Ashli on Sunday! Hope you're having fun during your weekend in Philadelphia with the Bove and Dotsicas peeps! I bet Thomas did great on his first road trip and was thrilled to see his PA family... Love to you all!

Kristin

Friday, April 20, 2007 5:12 PM CDT

Hello everyone! We've been back in California since Monday afternoon and have been busy with our 'normal' routines. We had a terrific week-plus with Teetay, Geep, Aunt Ashli, TG, and especially Thomas. I even got to babysit one afternoon and he slept the whole time. Can you say "perfect"? Thomas' baptism last Sunday was a wonderful event - despite the nasty wind and rain - and we loved every minute we got to spend with the family.

Last night, Grandma and Grandpa Kelso arrived and the girls were thrilled to see them! What a treat for them to see ALL four of their grandparents within the same week and on opposite coasts! Morgan has given up her room this weekend so that Grandma and Grandpa could sleep there. She and I are having a 'slumber party' in my room. Last night, Morgan said, "this is neat, Mommy. We've never done this before!" I remember when I was a little girl when Geep would go TDY with the Air Force, Ashli and I used to take turns sleeping in Teetay's bed. It was always a special treat for us! I'm glad that Morgan and I can share in the same type of memories.

Grandma and Grandpa have already jumped into Allyson's routine. I had a doctor's appt this morning, so they worked with Deborah and Allyson during Speech Therapy. Grandma went with Allyson and me to the Therapy Center for OT and PT while Grandpa helped get a new battery installed in Mark's car. (Ssshhhhh! Don't tell anyone, but I haven't been driving it as much as I should have, and the battery lost all its juice!) I promise to do better over the next 4 months...

Tonight I'm going out to dinner with some friends, so Grandma and Grandpa will get the girls all to themselves! I have a spouses' group luncheon tomorrow - a farewell for our CO's wife. I'm excited to be able to have some fun time for myself while I have "free babysitting".

Morgan has been going really well in her karate class. Yesterday after class, Sensei Jackie suggested that she start attending the next level class (6-8 year olds). Sensei told Morgan that she liked having her in the little kids class as her "helper", but that she thought Morgan would benefit from being in the next class. Morgan was beaming and so excited!!! So, next Tuesday, we'll start having karate at 5 pm 3x/week plus Saturday mornings. Morgan will also be testing for the next belt level next Saturday, so we have lots going on there!

Allyson conitnues to eat well and has started eating some new foods - blueberries and bananas to name a couple. She's also trying to imitate anything we say and is babbling a lot more. Grandma and Grandpa definitely saw a difference in her speech since December.

Hope you have a wonderful weekend. Our thoughts and prayers continue to be with all the families affected by the massacre at Virginia Tech. I'm wearing orange today in remembrance of all who lost their lives.

Thank you for your continued support for us as well.

Love,
Kristin

P.S. For anyone keeping track... Mark deployed three months ago today! We're getting close to being half-way done!

Tuesday, April 10, 2007 9:24 PM CDT

Yes, we're here!!!!! But where is Spring???? Where is the sun???? (Okay, I'll admit that we say it today... it was still chilly, though!)

We've had a wonderful visit so far. Lots of laughter at Teetay's and Geep's house. Lots of holding and cuddling with Thomas. We've seen snow, hunted eggs, swung on swings, fed geese, watched movies, shopped, been photographed (even professionally!), eaten out, eaten in, slept, bathed, played, etc., etc... and it's only Tuesday night!!!!

Despite the cold weather, our hearts have been warmed with this trip "home" again. Morgan and Allyson are enjoying themselves to the fullest and I've had a chance to relax a little bit. I've turned over many of my "jobs" to Teetay and Geep and they've loved giving baths, feeding Allyson, preparing meals - just a few less responsibilities for me can be so rejuvenating!!! We're looking forward to heading to downtown Washington tomorrow to visit the Natural History Museum. Friday we're planning a trip to the National Zoo. I'm planning to stay with Ashli, TG, and Thomas at the end of the week to help them out a little bit... Although Ashli certainly doesn't need any help. She's already a terrific Mom - I wonder where she learned so many "tricks of the trade"?!?! I'm just inserting myself into their lives so I can spend more time with Thomas. He is such a cutie-pie!

Hope the temps are warming up for everyone. I do miss the California sunshine, but I don't mind "sacrificing" a little bit to be here. It's a wonderful and welcomed "break" for me after "going solo" for almost three months. Hope the Easter Bunny filled your baskets with your favorite treats! Enjoy the new pictures! The one on the homepage truly exemplifies Morgan and Allyson having a BALL and just being plain silly tonight!

Kristin

Thursday, April 5, 2007 2:50 PM CDT

Twenty-four hours from now, we'll be on our way to Virginia! Morgan is so excited to go to Teetay's and Geep's house - Allyson is too, I think! I can't wait! However, Morgan was lamenting this morning that she was going to miss school and all her friends next week. When I told her that school would be closed and that her friends would be at home with their families or visiting their grandparents, she felt better. Again, she asked me, "Are you sure that the other children aren't going to be at school when I'm gone?" Morgan would go to school on the weekends if she could!

Our bags are packed (mostly!). Our snacks and treats and goodies for the plane have been purchased. Allyson will be flying without her carseat for the first time, so let's pray that will go smoothly. She also has her own carry-on suitcase that will be full of things to entertain her! I think both are appropriate for a two-year old who also has her own frequent flyer card...

We're looking forward to spending 10 wonderful days with Teetay and Geep... Ashli, TG, and Thomas... the Philly gang who will be in town for Thomas's baptism on the 15th... and a slew of friends in the VA/DC/MD area. It's sure to be a fun-filled, action-packed, busy, loving week+. I'll post pictures and updates when I can!

Happy Easter! Happy Spring!

Love,
Kristin

Friday, March 30, 2007 11:30 AM CDT

GOT PIZZA?!?!??! Allyson does... and she's reclaimed her website and demanded that her photos reappear. However, she is sharing the Photos page with her sister and cousin, Thomas. Enjoy!

Happy Birthday, Teetay! Morgan asked me how old you were and when I told her, she said, "Wow, Mommy... Teetay is older than you!" Uh, yeah... I would hope so since she's my mom!

Have a great day! Love you TONS!!!!!

Us 3 Cali Girls



Friday, March 30, 2007 0:42 AM CDT

Happy Friday! Another week has passed and we're continuing our busy-as-ever pace...

Morgan competed in her first karate tournament Wednesday night. She earned 1st place in sparring and 1st place in the forms competition. She also participated in wrestling and won her match, but awards were not given for wrestling. She was ecstatic about her performance and she genuinely deserved 1st place in those categories! Connie was taking care of Allyson for me, so I was able to capture the tournament on film for everyone to see. Morgan also got a perfect score on her Spelling test last Monday. Her third one with a 10/10 score! Hooray!

Allyson and I have been busy with 'extra' therapy this week. Both her OT (JanDee who sees her twice a month) and PT (Joanne who sees her every 2-3 months) scheduled sessions this week. We also had an appointment in LA on Monday for a hearing test. This is the first one since her new tubes were placed in February. Allyson passed her hearing test (another Hooray!), however, when the audiologist used the tympanogram to test the air flow in the ear canal, she determined that the left ear tube was clogged or obstructed. We didn't see her ENT on Monday, but moved up her regular appointment from late May to early May. Most likely, the tube is clogged with wax/debris and will have to have an intensive cleaning to resolve the issue. She may not hear as well in that ear, but the right ear is compensating.

The VAW-112 Spouse's Club is running a food both at our local Air Show this weekend. I've been busy this week coordinating schedules and distributing information to the other spouses in our squadron in preparation for that. It's supposed to be a beautiful weekend here, so hopefully turn-out will be good and we'll make lots of money for our club. The money we raise will be used to throw a celebration bash when the squadron guys and gals return home in August.

Speaking of that.... you may have heard Mark's "boat" mentioned in the news this week. The Stennis has been busy in the Persian Gulf "keeping the peace". Currently, they're in port for a few days. Morgan and I both got to talk to Mark this morning before she went to school. It was great to have a LONG conversation and not have to deal with the delay over the ship phones. Mark and several other officers are staying at a hotel in Dubai. He was going for a swim in the pool after we spoke this morning and then out to dinner for sushi and a beer or two... or three, perhaps! Morgan answered the phone when Mark called and got to tell him all about her tournament. He was so proud!

Happy Birthday to TEETAY on Saturday! We love you lots and can't wait to see you all in one week!

Have a great weekend!

Love,
Kristin

Wednesday, March 21, 2007 11:50 PM CDT

Isn't it still Monday?!?!?! Ah, how the time flies... Here's the feeding evaluation update you've all been waiting for...

I met with a man named Ben Zimmerman who is a Behavioral Psychologist. He received his training in this field at The Kennedy Krieger Institute associated with Johns Hopkins. He now runs a feeding clinic in Los Altos, CA... near San Jose and is working out the plans to open a feeding clinic in southern California sometime later this year.

We met Mr. Zimmerman (Ben) in Los Angeles where he was joined by a mother who went through his program with her daughter. Audrey and her daughter, Vivian (who is 2 weeks younger than Allyson) spent 6 weeks at the clinic last summer and completed Ben's intensive feeding program. Vivian was 100ependent on her g-tube before the clinic and was 100eeding orally after the clinic. Her case was much more extreme than Allyson's and she was able to get "off" the tube in just 6 weeks. Anyway, Ben asked a lot of questions about Allyson's medical and feeding history, how we were feeding her now (typical day of oral and tube feeds), etc. He also observed me feeding her. When she started to fuss and sign "all done" and I stopped, he said he would have pushed her farther. His approach is pretty strict and straight forward. He doesn't believe in a lot of distractions (i.e. tv, toys, books - they can be used IF NECESSARY to reinforce positive behavior - like "eat two bites and then you can look at a toy"...) He doesn't believe in "grazing" and having food available all the time so that a child eats whenever they want. His belief is that structure is necessary to establish normal eating patterns and to assist with behavior modification. It all sounds very straight-forward and makes sense. We've actually tried some of his tactics with Allyson before without much success and then turned to another approach.

Overall, it's a strict approach aimed at behavior modification. If we choose to pursue the intensive program, he would work with Allyson and establish mealtime routines at scheduled times and with specific food. HE and ultimately I would be "in control" of the feeding process. As it stands right now, Allyson is in control. She eats what she wants whenever she wants... the problem is that she never eats enough to satisfy her nutritional needs. Ben wasn't saying that the approach we've taken is "wrong"... obviously, when you're trying to get a child to eat for the first time in her life, you'll try and do whatever "works". NOT doing that would be counter-intuitive. (His word, but I like it and keep using it!) He doesn't advocate introducing a lot of different textures at once. Stick with one consistency and then move onto the next - not a variety. That will come later, but the first priority is getting her off the tube. He also said that we need to make the transition to night time ONLY tube feedings, then as she starts to eat more during the day, we start cutting back at night until it's down to ZERO. I've already started working on that - it makes sense and other drs/OTs have mentioned it, but we didn't think she could handle so much in her stomach at one time, so we've always split up her feedings... currently we're feeding her twice a day.

Ben's feeding program has a 94uceess rate. He said he could have Allyson 'off the tube' in ONE week, but we'd probably need 3-4 weeks to complete the program. Here's how the program works: The first week, Allyson works with Ben and HE feeds her three meals/day. His staff will assist with positioning her properly, making sure she's not flailing around, hitting, throwing things, holding her hands down by her sides, etc. I won't be present for these feedings during week one. Every ounce of food is weighed and measured and then you subtract that from what she gets through the tube at night. The second week is a repeat of the first with me observing how things are done. The third week is when I get to start doing the feedings based on the protocol that's been established. The fourth week is maintenance and making sure that we're ready to go home. It may take longer - you don't really know until you start - but he thought that we'd need 3-4 weeks total.

After meeting with Ben and talking with mine and Mark's parents and e-mailing Mark, I've decided that I want to do this for Allyson and me... for all of us really. I have a list of parents who completed the program with Ben and whose children had issues similar to Allyson's. I plan to talk to as many of them as I can before we actually take the plunge. My biggest question/concern is how you make the transition back to life at home after being in the controlled environment of the clinic for so many weeks.

This certainly isn't an easy decision to make and there are many details to work out, but here's the way I see it... for over a year (since her palate was repaired) we've tried hard to get Allyson off the tube, we've followed the recommendations of 'everyone', got on board with the program, she's progressed some, but we need to get over this 'hump' (so to speak) and get her to the next level (EATING) sooner than later. There's no reason medically why she can't eat orally. We know she CAN eat... she likes to EAT, she just isn't... I think we're at the point where we need an intense program. I think that the sooner we can transition her, the better. As a family, we'll be facing a lot of changes happening near the end of the year with Mark returning from cruise and then our move in November. I think if we can get "this" taken care of before then... we'll be in a great position to move on with the rest of our lives!:-)

Here's the plan. Allyson and I will spend most of July in Los Altos at the Feeding Clinic. We'll fly to VA (all three of us) at the end of June for Rally for Ally and then Allyson and I will come back here. Morgan will stay with Teetay and Geep while Allyson and I are at the feeding clinic. Before the NFED conference on July 26, Morgan and Teetay will fly back here. Hopefully, Allyson and I will be done with the program and can attend the conference with them. If we're still going through the program and can't leave, I'll miss the conference or maybe we can just take a break and return to Los Altos afterwards. In either case, we'll have at least three and a half weeks of the program (July 2 - 25). We'll have to stay in a hotel in the area and may possibly visit friends in Oakland on the weekends (it's about an hour away).

The feeding clinic is expensive and most likely, will not be covered by insurance. The cost is $3000 per week plus our hotel expenses, etc.. Ben has yet to see an insurance company who will pay for the clinic and he's argued the case with many - think about what insurance companies would save not paying for feeding pump rentals, formula, medical supplies, etc. Of course, they don't see it that way! We'll plan on using money from Allyson's medical fund (which was set-up two years ago for this kind of need) and we're prepared to make this happen!

So, that't the BIG STORY of the month! I've already started transitioning Allyson to night-time feedings only and she's tolerating it well. We're trying to implement some of Ben's suggestions in preparation for the clinic in July. Whatever we can accomplish now will only serve to help us move closer to the goal once we work with him in July.

Everything else is fine. Yes, I'm feeling much better and feel like our house is finally germ-free. As Teetay mentioned, Morgan got another 10/10 on her Monday spelling test (her words were: blue, green, white, tire, read, paint, goat, deer, toad, five) even though I had to make her study. Tonight she read ME more that half of the book "A Bargain for Frances" and I couldn't have been more proud of her! She's learning and growing so much!

Our other big news is that we got to see Mark last night... via Video Teleconference! We had five minutes to see him and talk to him face-to-face. Morgan did most of the talking and even showed off her karate moves. Allyson was surprisingly STILL and QUIET - I think she was kind of confused by the whole thing. I mananged to squeeze in a "hi, bye, and I love you". The time went by so quickly, but it was definitely worth it! Morgan was still smiling ear-to-ear when she went to bed last night.

Hope you're having a great week! We don't have much planned for this weekend... amazing, but true! Thanks for all of your love and support. We all appreciate it greatly!

Love,
Kristin

Sunday, March 18, 2007 11:48 PM CDT

Hope you all had a great weekend! We had a super BUSY Saturday, but it was informative, enlightening, and fun in various ways. I have lots of news to share about Allyson's feeding evaluation, but I'll save that for Monday after I've had a chance to digest, process, and compose... as well as share the info with Mark first. So stay tuned for a newsy update on Monday sometime.

I had a terrific time celebrating St. Patty's Day with the other VAW-112 Golden Hawk spouses (pictured above). We shared many laughs together as we drank bright green margaritas and toasted ourselves for making through the first 8 weeks of deployment! We're planning some fun events for the near future and I can't wait to get together again!

I happy to report that we're all FINALLY well. Allyson is nearly "spotless". Morgan has remained healthy despite an occasional cough and a couple of feverish mornings last week. I am feeling much better since getting antibiotics on Friday to treat STREP THROAT which I've had for over a week. I didn't realize how badly I've been feeling until I actually felt GOOD today. Does that make any sense?

Check out new pictures of Thomas on the Photos page. I know this is Ally's site, but she doesn't mind sharing her space with her newest cousin... I'm sure of it!

Happy Monday!

Love,
Kristin

Thursday, March 15, 2007 1:52 PM CDT

Greetings on the Ides of March!

Yesterday Morgan had her final ballet performance of the winter session and we celebrated with her friend, Nicole, and her family with dinner at Rubio's! The homepage photo is of Morgan and Allyson and their sister-friends, Nicole and Annika. The big girls are the same age as are the little girls, so they all have fun together!

Allyson's rash is almost cleared up now. She still has some scabby cold sores around her nose, but they're getting better as well. I'm still not feeling great. My "issues" have moved from my throat up into my head. Hopefully, there will be some relief soon! Morgan came home early from school on Tuesday because she was running a fever. She's gone into school late the past two mornings because she wasn't feeling well, but seems to be on the mend now. I'm still 'waiting' to see if she'll get the same blisters that Allyson did... so far, so good.

Other than our 'sickiness', we've been plugging away with the usual activities. Allyson's therapy sessions have been accelerated this week since we had some make-ups to do from last week. Although Morgan missed karate on Tuesday, she's planning to attend class this afternoon. She'll be competing in her first tournament on March 28th, so the class is busily preparing for that. She'll compete in forms, sparring, and wrestling. I think she's getting excited about it, but we'll see as the time grows closer.

As Teetay mentioned in her guestbook entry, Morgan got a 10/10 on her first spelling test on Monday. Only four students got a perfect score and she was among them! She was so proud to show me her paper on the wall with her perfect score and smiley face. In case you're wondering what's on a Kindergarten test, her spelling words were: hair, feet, ears, nose, tail, rope, rake, chair, train, table. Pretty good, isn't it? She'll have weekly spelling tests from now until the end of the year. She's also due to receive a report card next week. Morgan also told me this week that she likes math better than language arts. She especially likes two-digit subtraction! I can remember a couple of months ago she was in tears whenever she had math homework! Ah, how things change!

We're in for another busy weekend full of activities... I hope I can keep up with everything! Tomorrow night we have a birthday party to attend for sisters who are turning 2 and 4. On Saturday morning, we'll drive to LA for Allyson's evaluation with the Feeding Specialist who's opening a new clinic in southern California. This is the appointment that was cancelled back in January. Mid-afternoon on Saturday, Morgan has a birthday for one of her classmates. After that, we'll head to Point Mugu for a wives' meeting/St. Patrick's Day party. I've gotten a sitter for the girls, so hopefully I'll be feeling well enough to enjoy myself a little bit! On Sunday, I'm working the nursery at church and then we'll be home to rest.... what's rest??!?!?

Hope you all have a great weekend! Thanks again for your tremendous support with the NFED raffle ticket campaign! I received our voucher today. $300 to help with the cost of the annual Family Conference! Hooray!

Love,
Kristin

Thursday, March 15, 2007 1:52 PM CDT

Greetings on the Ides of March!

Yesterday Morgan had her final ballet performance of the winter session and we celebrated with her friend, Nicole, and her family with dinner at Rubio's! The homepage photo is of Morgan and Allyson and their sister-friends, Nicole and Annika. The big girls are the same age as are the little girls, so they all have fun together!

Allyson's rash is almost cleared up now. She still has some scabby cold sores around her nose, but they're getting better as well. I'm still not feeling great. My "issues" have moved from my throat up into my head. Hopefully, there will be some relief soon! Morgan came home early from school on Tuesday because she was running a fever. She's gone into school late the past two mornings because she wasn't feeling well, but seems to be on the mend now. I'm still 'waiting' to see if she'll get the same blisters that Allyson did... so far, so good.

Other than our 'sickiness', we've been plugging away with the usual activities. Allyson's therapy sessions have been accelerated this week since we had some make-ups to do from last week. Although Morgan missed karate on Tuesday, she's planning to attend class this afternoon. She'll be competing in her first tournament on March 28th, so the class is busily preparing for that. She'll compete in forms, sparring, and wrestling. I think she's getting excited about it, but we'll see as the time grows closer.

As Teetay mentioned in her guestbook entry, Morgan got a 10/10 on her first spelling test on Monday. Only four students got a perfect score and she was among them! She was so proud to show me her paper on the wall with her perfect score and smiley face. In case you're wondering what's on a Kindergarten test, her spelling words were: hair, feet, ears, nose, tail, rope, rake, chair, train, table. Pretty good, isn't it? She'll have weekly spelling tests from now until the end of the year. She's also due to receive a report card next week. Morgan also told me this week that she likes math better than language arts. She especially likes two-digit subtraction! I can remember a couple of months ago she was in tears whenever she had math homework! Ah, how things change!

We're in for another busy weekend full of activities... I hope I can keep up with everything! Tomorrow night we have a birthday party to attend for sisters who are turning 2 and 4. On Saturday morning, we'll drive to LA for Allyson's evaluation with the Feeding Specialist who's opening a new clinic in southern California. This is the appointment that was cancelled back in January. Mid-afternoon on Saturday, Morgan has a birthday for one of her classmates. After that, we'll head to Point Mugu for a wives' meeting/St. Patrick's Day party. I've gotten a sitter for the girls, so hopefully I'll be feeling well enough to enjoy myself a little bit! On Sunday, I'm working the nursery at church and then we'll be home to rest.... what's rest??!?!?

Hope you all have a great weekend! Thanks again for your tremendous support with the NFED raffle ticket campaign! I received our voucher today. $300 to help with the cost of the annual Family Conference! Hooray!

Love,
Kristin

Monday, March 12, 2007 3:59 PM CDT

Greetings from a summer-like Port Hueneme! We're enjoying extremely warm temperatures here... and I hear that "spring has sprung" in parts of the east coast as well. Sure beats the bitter cold we endured last Monday in Virginia!

Anyway, aside from the weather, it's been a "tale of two worlds" in our house since we returned last week. Morgan has been happy and playful and a BIG help to Mommy (see Morgan's Sunday afternoon splash photos on the next page). Allyson and I have both been feeling pretty lousy since Thursday (me) and Friday (her). After developing a rash in addition to her cold-like symptoms over the weekend, I took Ally into the doctor this morning. She has hand/foot/mouth disease which is treated with antibiotics. I had been using zinc oxide on her sores since Saturday and they're drying up and scabbing over now. In addition, she has clusters of cold sores inside and around her nose. What I originally thought was gunky, crusty mucous was actually oozing sores that bled when I wiped her nose. She has another antibiotic for that. Fun stuff, isnt' it? My symptoms have been completely different and I probably had strep throat based on how horrible my throat felt. I'm feeling better today and can actually drink water without tearing up when I swallow! So, that's what WE'VE been up too...

Glad to hear that Thomas is doing well at home and that Ash and TG are getting into their groove as parents. I've been getting updates once or twice a day... it's almost like being there. We all can't wake to get back to see everyone in less than four weeks!

I'll keep you posted on Allyson's progress. Her sores should clear up within a week. I'm keeping her away from other kids just in case she's still contagious, so no gym, playgroup or baby dance class this week! Boo-hoo! Keep us all in your thoughts so that we recover fully and that Morgan stays well. She already had her dose of illness earlier this year!

Love and hugs,
Kristin

Thursday, March 8, 2007 1:45 PM CST

Here's another reason to celebrate this week...

I just got a call from the NFED and WE sold the most raffle tickets!!! Hip, Hip, Hooray! Thank you all so much for contributing to our raffle ticket success. We'll receive a $300 voucher to use towards attending a family conference either this year or next. Unfortunately, none of our tickets sold was a winner for the raffle prize money, but we know that we're ALL winners anyway!!! There were 31,000 tickets sold this year and we contributed close to 4500 to the sales. Thank you so much again!!!!

The girls and I are back in CA. Thomas, Ashli, and TG are doing well. They'll come home on Friday and are excited about settling into their routine in their own house. Thomas is eating like a champ and Ashli's pain from her c-section is under control with meds. (She had a rough first night on Tuesday when nothing was working for her...). Please keep them in your prayers! Check out the link to "Thomas Photos" below. Love to you all!

Kristin


Tuesday, March 6, 2007 8:20 PM CST

We are please to announce the arrival of....

THOMAS JOSEPH GEORGE III

Born March 6, 2007 at 1:48 PM EST

Weighing 8 lbs. 13 oz.

Measuring 21 1/4 inches long

Delivered via c-section after "medical intervention" was not helping to advance Ashli's labor.

Ashli is doing fine. Sore from her incision, but managing... it's the "Matus girl" way, right?!?!?

TG is every bit the proud "papa" and seemed relieved that his son was finally "out"!

Thomas is ABSOLUTELY PERFECT in EVERY WAY!!!!

Sorry for the delay in posting... spent the rest of the evening at the hospital with Ashli, TG, and Thomas. Off the airport for our flight back to CA at 6:40 a.m. (yep, that's our departure time!)

Thank you for your prayers and well wishes!!!! We ALL appreciate them!

Love,
Kristin

Monday, March 5, 2007 7:54 PM CST

He's...... N O T ...... here ..... Y E T !!!!!!!

I know I "lied" that the next picture on the homepage would be of "Lester". If you look really closely, you might see him STILL inside. I'm calling this picture "Lester, in his womb with no view." Catchy, isn't it?!?!?!

Ashli's doing great. TG is too. It's just a long WAIT to see this stubborn little guy. Ashli has NO DOUBT that he's already taking on his father's characteristics! She was on Pitocin for 10 hours today. Mild-moderate contractions, but no dilation. "Lester" did make some progress in moving down the birth canal, so that was "good progress", but she and HE still have a way to go... She was given a "break" from the meds at 6 p.m. and will go back "on" at 10 p.m. tonight. She got to eat, drink, shower, and walk around for a little while. The overnight meds will be oral (vs. through her IV) and should help further prepare her body for a delivery on Tuesday. She will also get an Ambien to help her sleep... hopefully!

We spent today with Ashli and TG at the hospital. Her spirits were good --aside from being uncomfortable from being confined to the bed! Morgan and Allyson provided enough distractions to make the time pass, but they made frequent trips to the lobby and cafeteria to give Ash some quiet time.

We're back at Teetay and Geep's house tonight and unless we get a middle of the night call, we'll return to the hospital in the morning. The doctors said that the nighttime meds would NOT accelerate her labor so much that she'd deliver overnight. Ashli will most likely start laboring again in the morning. They will assess whether or not she'll need more Pitocin on Tuesday based on how her body responds tonight and if she's starting to have contractions on her own.

Her doctors are great and seem to follow the philosophy that "slow and steady wins the race." Ashli and Lester are both healthy, so there's no reason to rush things "just because" WE want to meet him (or that I'm supposed to be on at plane at 5:30 p.m. on Tuesday)!

I'm planning to change our flights and will return to CA on Wednesday. There will DEFINITELY be a baby tomorrow!!!! I can promise you that!!! REALLY... no lying THIS time!

Thanks for all of your postings and for checking the site today - I'll be sure to share your thoughts with Ash and TG. It's HARD to be patient, but as Dr. Elliott told Ashli today, "All babies are born and her baby will be too."

Have a great night! March 6, 2007 will be Baby George's birthday! Start singing!

Love,
Kristin



Sunday, March 4, 2007 6:18 PM CST

We're here in Virginia safe and sound... our travels went well aside from MAJOR turbulence for most of the plane trip. The girls were fine... I felt "green" for most of the flight but managed to hold it together until after we landed. Morgan and Allyson didn't even seem to notice! Some of you know that I have motion sickness "issues", but rarely get sick... well, those "issues" came to fruition on Saturday! Oh well! I felt fine once we got to Teetay and Geep's house and settled in for the night.

We spent most of today with Ashli and TG at their house in Georgetown. All of us "girls" walked up to the park and played for a little bit. It was VERY cold for us 3 California peeps, but we bundled up and had a great time!

No baby yet... Ashli certainly looks and feels ready to "pop". She'll go to the hospital tomorrow at 6:30 a.m. and start the induction process. Geep is working until 2:30 p.m., so Teetay, the girls, and I will hang out at the hospital and WAIT... Hopefully, we'll be able to see a grandson/nephew/cousin by dinnertime!!!!

The next picture you see on the homepage will be once of "Lester" and his REAL name.

Keep Ashli and TG in your prayers tomorrow as they enter parenthood! We'll update the site when we have some news!

Love,
Kristin

Friday, March 2, 2007 9:18 AM CST

No news on the "Lester" front... just getting the webpage ready as the girls and I leave tomorrow for Virginia.

Hope this little nephew pokes his head out before it's time for us to return to California on Tuesday afternoon.

Keep praying... Ashli is SO READY!!!!

We've had one of our usual busy weeks... today was the first week of "everyday therapy/intervention" and Tuesday and Wednesday were double sessions. Allyson and I are BOTH feeling the effects and dragging a little on this Friday morning.

I ordered another 500 raffle tickets on Tuesday. The checks are still coming in. Thank you all SO MUCH for your contributions!!! Ready for the FINAL TICKET COUNT?

Drum roll please.... 4440!!!!!!!!! WOW!!!! You all are terrific!!!

I'm sending everything in to the NFED today so that it will arrive by the deadline of March 6th. The raffle drawing will be held on Thursday, March 8th. I hope we have a $$ winner from our group!

If Ashli doesn't go into labor this weekend, she'll be induced on Monday, March 5th (03-05-07 is a pretty cool birthdate, isn't it??). I hope her induction will go smoothly and quickly, so please keep her and TG and "Lester" in your prayers. I was induced with both Morgan (which took almost 36 hours, but I was 5 weeks early) and Allyson (which took 12 hours and I was 1 week early). Let's hope Lester's birth will be on the quick side since he's been 'cooking' so long already!

Happy March! Hope it's starting to warm up wherever you are! We're going to miss 75-degree temps here this weekend... not complaining, we can have those anytime! Seeing Ashli's baby will be PRICELESS!

Love to you all-
Kristin

Saturday, February 24, 2007 4:04 PM CST

Hello family and friends! Another week has gone by and we're busy, as always! Today we've already been to karate class, craft time at Lakeshore Learning, and out to lunch. Still to come are a birthday party at Pump-It-Up and my "girls night out" with some friends! Guess which activity I'M most excited about?!?!? Yep, going out tonight and having Connie babysit Morgan and Allyson.

Great to see Mark's entry in the guestbook. We've exchanged several e-mails over the past couple of days since his combat missions began. However, I had to guess using "code words" which country he's been flying over. I finally got it right when I asked him, "is it a place like a blanket?" Now he just blurts out AFGHANISTAN in the guestbook. I should've checked there for my clues. ha ha!

The past week was business as usual for us. Our zoo trip last Monday was lots of fun. Allyson couldn't care less about the animals, but she loves running around everywhere! Ally and I went to CHLA on Thursday for her post-op check-up with the ENT. Everything looks good with her new tubes. She'll have a hearing test in a month and will see the ENT again in late May. She's continuing to eat well and is drinking more out of a sippy cup. I've been measuring how much formula she's drinking and subtracting that from what goes into the tube. Most days, she's consumed 4-6 ounces orally which is 20-25f what she's usually fed through the g-tube. We're definitely moving in the right direction!!! Let's hope this trend continues...

Tomorrow (2/25) is Lester's due date. The girls and I have tickets to fly to VA next Saturday, so he better make his appearance by then! Swim down, Lester! Head for the light! You can do it!

I received my second batch of raffle tickets this week. We're at 3700 or so and I have 300 left. Please e-mail me asap if you're sending a check or want tickets. The remaining tickets/stubs/checks will be mailed into the NFED on Friday, March 2nd. Thank you all for your wonderful support! The NFED thinks we're all amazing... and I agree!

Enjoy the rest of your weekend!

Love,
Kristin

Monday, February 19, 2007 0:39 AM CST

Greetings and Happy President's Day and Happy Birthday to Aimee in Minnesota! (Will TODAY be Lester's birthday too?) We'll see....

It's been another busy week/weekend for us. I'm reminded of a saying Teetay used when we were younger, "if you rest you will rust." Nothing rusty here! :-)

Morgan, Allyson and I enjoyed a nice Valentine's Day together. Morgan had a party at her school and we made pink cupcakes baked in ice cream cones with pink icing and pink candy hearts on them. I wonder who thought up the decorating scheme... Allyson enjoyed hanging out with me on Valentine's Day morning while we waited for the cable guy to visit. Our DVR box was on the 'fritz' so we had it replaced. During Morgan's ballet class Wednesday afternoon, Allyson played on the playground and got her thrills from running down the hills. She face-planted a couple of times and it didn't even phase her. We were planning to have Valentine's dinner at Applebee's after ballet class, but opted for the speedy service of Red Brick Oven Pizza instead. Morgan ate FIVE pieces of cheese pizza and Allyson actually ate TWO pieces of pizza! Allyson first picked off the cheese and then picked at the doughy part of the crust. She also shared my diet coke and loved sucking the soda up through the straw. We even had to get a refill! (Don't worry, folks... I drank most of it, but she DOES like it!) The girls opened their Valentine's presents at the restaurant and we all had a good time.

On Thursday we went to Parker's house for dinner. Adrienne made tacos and Morgan ate two of those. (This is a new thing for Morgan). Allyson played with the big kids and cried when it was time to leave. We enjoyed our outing and spending time with our neighbors - nice, low-key, relaxing, and I didn't have to cook!

Allyson had her baby dance class on Friday and participated throughout most of it. Each week she is becoming more and more comfortable with the routine and exercises. She's very comfortable leaving my side... however, when she does, she's usually heading over to the mats even when it's not tumbling time! That's when she gets upset. I think she's starting to 'get it' now. While Connie watched Allyson in the afternoon, I took Morgan and Isabella to the local Children's Museum and then to the park to run around and play. The weather has been great the past few days... almost summer-like! They really had a good time and played well together.

On Saturday, Morgan received her new belt at karate class. She's now a white belt, third degree which is a white belt with a black stripe in the middle. She was thrilled when she got her new belt! We had a fairly 'easy' rest of the day just doing things around the house and we washed both cars. Morgan helped me and she was wearing her bathing suit - it was that warm! Today we had plans to go to the Natural History Museum in LA with some friends. Morgan had looked at the website and seemed excited to go... however, we she woke up this morning she was practically in tears because we weren't going to church. She's definitely a creature of habit and likes our new-found Sunday routine. I tried to convince her that it was okay to miss one Sunday, but she was insistant. I cancelled our museum plans with our friends. I figured there was no sense having Morgan being grumpy and miserable while driving to LA and while visiting the museum. We'll plan to go another time - and not on a Sunday!

Since Morgan is out of school on Monday, we're heading up to Santa Barbara to the zoo. We purchased an annual membership after Christmas, so it's about time we used it. Several of the moms and kids our playgroup are also going, so it should be a fun day!

I'm still working on raffle ticket stubs and contacted the NFED today for 1000 more tickets. By my count, we're close to 3600 sold and I know there are many "checks in the mail" literally. Now I want to reach 4000 tickets, so there's still plenty of time to make a donation. Please e-mail me or send your check (made out to "NFED") to:

Kristin Kelso
613 Pacific Cove Drive
Port Hueneme, CA 93041

Please include your address and phone number with your check/ticket request. Don't worry about sending address labels now, it's just as easy for me to make labels with all the pertinent info on them.

THANK YOU ALL FOR YOUR WONDERFUL SUPPORT!!!! We've surpassed our goal and your generosity is GREATLY appreciated!!!! Yeah, team!!!! (Oooops! That was the cheerleader in me getting out! Where did SHE come from??)

Have a great week! Much love to you all!

Kristin

Friday, February 16, 2007 1:35 AM CST

New update coming...

as soon as I come down from my Valentine's Day sugar high... or when I'm not up to my elbows in NFED raffle ticket labels...

Over 500 ticket sales/requests came in TODAY!!!! Thank you to everyone who responded to my e-mail plea... I think it 'worked'!

We're almost at 3000!!! We can DO IT!!!! Two weeks to go!

Kristin

Friday, February 9, 2007 4:47 PM CST

Happy Friday and Happy Birthday to Geepie tomorrow!!! It's a semi-big birthday (a number ending in "5") and Geep will be spending his special day doing something he loves to do... working at Wegman's! Hope you have a terrific day, Geepie!

Allyson is doing great following her surgery. She's been sleeping through the night, eating GREAT (4 containers of yogurt yesterday AND scramled eggs AND baby food). She's also enjoying drinking "Sesame Street" (she's a big Elmo fan right now!) apple juice out of the box with a straw and consumes one box a day. She's continuing to sign that she wants to eat and has been agreeable during feeding time.

To elaborate on the ear tube surgery... Dr. Geller (no relation to Monica and Ross) was able to put tubes in both ears. The ear drum issue on the left self-corrected over the past six months. As Ashli mentioned, Allyson had a lot of wax build-up/debris/blood/etc. clogging the tubes and her ear canal. Once that was cleaned out, he also noticed that she had a lot of fluid in her ears as well (since the tubes were not working properly). Dr. Geller seemed certain that Ally's hearing should be much improved now. We'll schedule another hearing test for March (4-6 weeks post-op) and see what the findings are. So far, I haven't noticed much of a change, but time will tell... The excessive wax issue is part of her condition, Ectodermal Dysplasia, and there's not much that can be done about it. She doesn't make the natural oils that would help flush wax out of her ears. Some children use Floxin (or something similar) drops on a semi-regular basis to help flush out the wax. I aksed Dr. Geller about this and he is hesitant to use drops too frequently, but is open to trying different approaches. Because of the poor motility in her ears, the liquid drops could become stagnant and then prone to fungus and bacteria growing. Obviously, that would present further ear problems. We'll follow-up with Dr. Geller in two weeks and decide on a course of treatment then. For now, she seems fine and happy with these tubes.

Our week has been another busy one. Allyson's therapies continued throughout the week (other than on surgery day) and Morgan enjoyed her karate and ballet classes. On Saturday, Morgan will complete a belt test at karate. Afterwards, we're joining up with some friends for crafts at a local store and lunch. Our monthly spouses meeting is late tomorrow afternoon so we'll head over to the base for that. Sunday should be a quieter day.... we only have church on the schedule!

Hope you have a great pre-Valentine's weekend! Happy birthday to the grandfathers in Virginia and Pennsylvania. If Teetay's prediction is right, you may have a new grandson this weekend... stay tuned...

Love,
Kristin

Tuesday, February 6, 2007 2:35 PM EST

Ally is out of surgery #7 -- Hooray!

I just briefly spoke with Kristin and two new, larger, ear tubes are IN. Things took a little longer since there was a lot of cleaning of wax, debris and build up that needed to be taken care of - all part of having ED, and the doctor thinks this is a big contributor to the hearing loss. At least we're on the path to understanding more and more each round!

I am sure Kristin will post an update - when she can! Clearly from her "leisurely lifestyle" as mentioned in the update below she'll have all sorts of time to keep the journal updated... (HA HA - are you kidding me?!)

Thanks to you all for your constant prayers for Ally, Kristin, Mark and Morgan. And HUGE THANKS to dear friends like Nicole who stepped in to be on Morgan duty (since 5:30 AM today!). We all appreciate your support and love.

-Aunt Ashli

Tuesday, February 6, 2007 0:48 AM CST

Where has the time gone?!?!? Shame on me for not updating the journal in over a week. Looks like I’m establishing a pattern here…

Allyson had her check-up with Dr. Kay last Monday. As expected, he’s pleased with her feet and how they’ve healed following her surgeries. We’ll see him in six-months to make sure that her balance is still good and that her feet are continuing to “work well” (for lack of a better term). On Thursday, we saw Dr. Geller, her ENT. Although Allyson’s been playing around with a cold and some increased congestion for the past few days, she’s cleared for her surgery tomorrow. We have to be at the hospital at 7:30 a.m.. Her surgery is scheduled for 9:30 a.m. PST assuming there are not delays earlier in the morning. Morgan is going to Isabella’s house (across the street) in the EARLY morning and Nicole (Isabella’s mom) will take her to school. I think I’ll be back in time to pick her up at 3:30, but if not… Nicole will pick her up too. Either Ashli, Teetay, or I will update the website as soon as there’s any news about Allyson’s ear tubes. Thank you, in advance, for keeping her in your prayers today.

Let me catch you up on the past few days. Friday was pretty busy... I had planned to g to the gym in the morning, but skipped it because Allyson seemed hungry and wanted to eat. Tough choices… feed my child or go workout?!?!? Anyway, she ate a whole container of yogurt. Her eating had slowed down a little bit in the early part of last week, but picked up by the end. By the time she was done with her yogurt, it was time to go to her “Wiggles” class. She participated more this time than the first week which was good. She even did one of the 'moves' on the mat (called the snake) that she had learned the week before. It's kind of like a military crawl where you're flat on your stomach and just use your elbows to move your body across the mat. Anyway, she danced a little bit too. Afterwards we played on the playground and fell asleep on the way home. I was hoping Allyson would take a long nap before we picked Morgan up at school. Unfortunately, she slept just an hour, however she was hungry after her nap and ate another container of yogurt. After we picked up Morgan from school, we attempted to have Valentine’s pictures made of the girls. However, the wait was too long and Allyson was tired by the time we tried to photograph her. I threw in the towel and took a couple of pictures at home (see the photos page). So don’t expect any Valentine’s photo cards from us this year! We did some shopping at Target afterwards and have a funny story about Morgan picking out Geep’s birthday card. Of course, I can’t share the story until after his birthday on Saturday… so stay tuned for that one! And to finish up our crazy day, we went out to dinner and didn’t get home until 7:30 p.m. And Allyson was ready for baby food then… go figure!

Saturday was another crazy day. Morgan had karate in the morning. Afterwards we had lunch and a playdate with a couple of moms/kids from our playgroup. We each have two girls so it’s fun to get them all together. The weather was great and we hung out at one of the parks on base. The big girls (two are almost 4 and Morgan) and little girls (almost 1, almost 2, and Allyson) had fun running around on the playground. After the playdate, Morgan had a gymnastics birthday party to go to. I dropped Morgan off there and then came home and put Allyson down for a nap and I threw in load of laundry. I went to pick Morgan up and ran to the grocery store to get provisions for Superbowl Sunday and potluck at church. Then we were home for the night!

Onto Sunday.... We went to church in the morning and stayed for the potluck luncheon afterwards. When Morgan was at the altar with the other kids for the children’s sermon, the Chaplain asked if the kids had any special prayer requests, Morgan said "for my baby sister." He asked if her sister was sick or hurt and Morgan replied, “no, she’s not. I just think we should pray for her because a lot of people do that.” I elaborated when it was time for the adults to request prayers and mentioned her surgery scheduled for Tuesday. I don’t think Morgan had Allyson’s surgery in mind when she asked for prayers, but it was sweet nonetheless. Sometimes kids say the darndest things, don’t they? Unfortunately, Morgan wasn't as sweet during the rest of the service. She was really disappointed that there wasn’t Sunday school since it was the first Sunday of the month when communion is offered. She squirmed a lot during the rest of the service and kept asking me when they were giving out the "crackers and juice" (aka communion). Next month, I’ll have to remember to bring some things to keep her busy while she’s waiting for her “church snack” (aka communion). After lunch, we went to one of the parks on base and met up with Morgan’s best buds from the squadron (remember the beach pictures from last summer when Allyson’s foot got sunburned? Those girls!). The girls played and Allyson eventually fell asleep in her stroller. It was almost 80 degrees and beautiful!! From there, Morgan went to one of the girl’s house and had ice cream and watched movies until about 5 pm while Ally and I went to a Superbowl party at one of the other spouse’s houses (say that 10 times fast!). We watched the game on and off and tuned into the commercials and halftime show. This homepage picture shows Allyson chilling out with a cookie as the game began. It was a fun day for all of us. We got home around 8 pm and both Morgan and Allyson fell asleep in the car. Hooray! I was asleep by 9:15... I'm sure you're tired just from reading this update, so you can imagine how tired I was doing all this stuff.

Today was a slower day… just playgroup in the morning and then prepping for tomorrow. I took Morgan’s things over to Isabella’s house this evening so we’ll have less to mess with at o'dark'thirty in the morning. Mark called tonight to check-in and wish Allyson well tomorrow. He’s 18 hours ahead of us right now and they’re off the coast of Guam. He sounds good and is anxious to get to their final destination. He hasn’t been flying a lot, but has been busy with his ground job as Operations Officer. He’s also learning to play the guitar, so that’s filling up the limited free-time he has. He e-mailed us a picture today and Morgan was really excited to see that when she got home from school.

Finally, NFED raffle ticket sales continue. For just $1, you could win $1000 in the raffle. If you’re interested in purchasing tickets to help the NFED, please e-mail me and I’ll tell you what to do. (or refer to the previous journal entry for more details.)

Hope the bitter cold leaves the east and Midwest soon. Our temps have dropped too. It’s only going to be 65 tomorrow!

Love,
Kristin

Sunday, January 28, 2007 10:52 AM CST

Hello on a RAINY Sunday here in California! We’ve had wet weather for over 24-hours straight now…it’s “cold” here too! I know much of the East was (is??) shivering in cold, snowy, icy weather… perhaps, Cat and family in Pineapple Land (Mark's near there too!) are the only ones having GOOD weather this weekend… Send some sunshine our way, Cat!

Yes, it’s been a busy first week without Mark at home… Allyson saw Dr. See (right before our San Diego trip) and Dr. Wright (this week) and got good reports from both. She gained three pounds since her last visit with Dr. See (in late Sept) and now weighs a whopping 27 lbs. and is 34 inches tall. Dr. See was so pleased with her weight gain that we got the go ahead to reduce her tube feeding by 4 oz./day. So now Allyson gets 12 oz. during the day and 12 oz at bedtime. Dr. See also recommended trying Periactin (and appetite stimulant that we’ve tried in the past with no noticeable results) once again. There have been some positive changes in Allyson’s eating habits since I began the new regimen. She’s eaten consistently well this week and has even expressed ‘hunger’ through signing a couple of times. This is a first! Up until now, we’ve always done Allyson’s oral feeding at scheduled times that coordinate with her therapies, tube feedings, and nap schedule. This week, Allyson has eaten her “dinner” after 7 p.m. several times after requesting food enthusiastically. She also ate twice one morning before her naptime – 4 oz. of yogurt at 9:30 a.m. and another 4 oz. container at 12:30 p.m. So, we’ve been adjusting things as we go. She usually goes down for her nap 12-12:30, but if she’s hungry then… feeding takes priority. Same goes with her evening meal. She’s usually taking at bath at 7 p.m. and in bed by 7:40, but a later meal will alter that somewhat. As we know, it’s a continuous learning curve where Ally is concerned. I don’t mind… it’s very encouraging to see her WANTING to eat! We were supposed to have an evaluation today with a feeding specialist who is opening a clinic in southern California. However, due to ‘lack of appts’, the weekend evaluations were cancelled and will be rescheduled at a later date. Maybe we won’t need to seek his services when the evals come around again… let’s hope so!

There was no “new” news from her appointment with Dr. Wright, the Hand Orthopedist. She adjusted the splint Allyson wears on her right hand while sleeping and we’re not due back for a follow-up for 6 months. That’s good news! We’ve progressed from 2-month to 3-month to now 6-month follow-ups. Hooray!

This week, Allyson sees Dr. Kay, the Foot Orthopedist. I’m not expecting any new news from him either and I expect will move to a 6-month follow-up with him as well. We also have an appointment with Dr. Geller, the ENT. He’ll check out Allyson’s ears in preparation for replacing her ear tubes (in the right and TRYING to place on in the ‘clogged’ left ear). Her surgery is scheduled for Feb 6th. It’s a minor outpatient procedure lasting less than thirty minutes. Yes, it’s still surgery (#7 for anyone keeping count!), but SO minor compared to the other ones she’s endured. I have a neighbor lined up to take Morgan to/from school that day. Hopefully, Allyson and I will be home in time to take Morgan to karate in the afternoon.

Other than doctor’s appointments and regular therapy sessions, our week was filled with a playgroup get-together on Monday and a “Teeny Weeny Wigglers” dance/tumbling class on Friday. She was pretty enthusiastic about the class and we both enjoyed ourselves. Her favorite part was walking up the inclined plank (raised about 12 inches off the floor) and jumping off onto the mat at the end. She also enjoyed crawling through the tunnel and watching the other kids (1.5-3 year olds) play “choo-choo”. Maybe next week Allyson will participate in that activity!

Speaking of dance classes, Morgan started ballet again this week. After almost a full year of instruction, you can see how much she’s grown and improved as a ballerina. Morgan has emerged as a leader in her class and is quick to answer Teacher Pam’s questions and always volunteers to demonstrate certain steps. As you can see on the photos page, Morgan also had a special karate class on Saturday. She learned some skills of nunchauka and was very attentive during the seminar. There’s a lot of coordination involved in twirling the nunchucks, not to mention, all the safety rules! Morgan seemed to have fun. It was difficult for me to see what was going on because her group was across the studio with their backs to the parents. I only heard her ‘complain’ once that her arms were getting tired! The nunchucks will be used in special classes and she’ll be able to earn an extra stripe on her belt by successfully demonstrating the skills she’s learned.

Last night we wrapped up the week with a squadron spouse's ‘pity party.’ Actually, it was a make your own pizza party! The girls enjoyed rolling out the dough for their pizzas (and Allyson played in the flour) and adding their own toppings… cheese, cheese, and more cheese! I enjoyed socializing with the other spouses and celebrating “one week down” (28 or 29 to go? A return date is uncertain at this point!). We have plans to meet often throughout this deployment… Bunco and a Superbowl party next weekend… our regular monthly meeting the following weekend, etc., etc. It helps the time go by faster when you have special events to look forward to.

Finally… February is Ectodermal Dysplasia Awareness month and is one of the primary fundraisers for the NFED. We have 3000 raffle tickets to sell. All the money goes to the NFED which provides services, conducts research and helps educate affected families and their medical providers. Tickets are $1 each and are sold in books of 5. By purchasing just ONE ticket, you have the opportunity to win the $1000 raffle prize. Second prize is $300 and Third is $200. The winning tickets will be drawn on March 8th. Please click on the NFED link below for more information about the foundation.

If you’d like to purchase tickets, please mail me a check made out to “NFED.” Also, please include your phone number with your ticket request and send me return address labels equal to the number of tickets you’re purchasing. It’s much easier and less time consuming to affix the labels instead of writing out everyone’s name and address on each ticket stub. If you don't have address labels, that's okay too. I will take care of filling out the tickest! Once I receive your check, I will mail you your tickets. If you have any questions, please e-mail me at ca.Kristin@verizon.net

My mailing address is:

613 Pacific Cove Drive
Port Hueneme, CA 93041

Thank you all for your continued support! Let’s all help out Allyson and other children affected with ectodermal dysplasia. Your contribution is appreciated!

Have a great Sunday!

Love,
Kristin

Saturday, January 27, 2007 2:57 PM CST

New journal coming soon...

Monday, January 22, 2007 0:27 AM CST

Hello, Everyone! Thank you for keeping us in your thoughts and prayers this weekend as we said good-bye to Mark in San Diego. We sincerely appreciate it!

We had a great time at Sea World on Thursday. Morgan loved the shows and seeing all sorts of fish and other marine life. Allyson was happy to be out of her stroller for long periods of time and able to walk freely throughout the park. The weather was great - sunny and cool! The park wasn't very crowded so we could easily explore the different areas. Morgan's 'favorite part' was going on the Wild Artic ride which is a simulated helicopter ride through the artic. She and Mark went on it while I stayed with Allyson who was napping/feeding at the time. Mark wasn't sure how Morgan would react, but she came off the ride smiling and saying, "that was so cool! But my stomach feels a little bit silly." (No, she didn't get sick. She probably would have gone on it again if we'd had time!) Anyway, we saw Shamu and the sea lion shows and dolphins interacting with families in the training pool. It was a perfect day to spend together!

On Friday, we toured the ship and Mark loaded his personal belongings onto the Stennis. Allyson cried the whole time we were on board (over an hour) and refused to get in the backpack carrier. She also didn't want to be anywhere but in my arms... so, I carried her up and down the ladders and across the flight deck and through the hangar and down the passageways. Anyone who's been on a carrier can imagine how much fun I was having (and I can still 'feel it' in my left arm and hip - Allyson wouldn't let me hold her on my right side)! Morgan loved seeing "Daddy's boat" and was full of questions about where he put all his stuff in his room and who did he call on the phone and where did he sit when he ate in the wardroom and why was everything so small when the ship looks so big, etc., etc. It was a great experience for her and I'm sure it will help ease her mind as the next few months go by.

Before dinner Friday night, we took a walk down to the beach near the Hotel del Coronado and played in the sand and got some great pictures (like the one on the homepage!). After dinner, we had a little time together back at the hotel where Mark gave the girls their bath and we played Dora dominoes. Around 9:00 p.m., we drove to the pier and said our good-byes. Allyson was still awake (barely!) and Morgan and I gave Mark big hugs and kisses. It was hard seeing him walk away from the car, but at least I know that we're now one day closer to seeing him again. Morgan teared up a few times over the weekend and said she missed Daddy a lot. I think she understands the magnitude of how long he'll be gone more than I thought. She's been great with Allyson the past few days. We've all had a cold since the middle of last week and I think Allyson's now starting to get it. She's been crankier and clingier than usual, so that's made things more stressful for me. I'm sure we'll get back into our routine this week and things will feel close to 'normal' (what's that??)again!

Hope you all had a good weekend! I'll update again later this week with updates of new activities for the girls and doctor's appts for Allyson.

Kristin

Wednesday, January 17, 2007 10:17 PM CST

Well, it's Wednesday now and my promise to update you on Monday has been broken. We did have a nice weekend together - running errands, going out to lunch, attending church services on base, watching football (Sorry, TG, about those Eagles. Sorry, Dani, about those Seahawks), packing bags, bags, and more bags for Mark's deployment, etc., etc. The mood has been pretty somber around here the past day or two. Tonight is Mark's last night at home and we're getting things ready for our trip to San Diego tomorrow. It's still chilly (okay, not FREEZING, Aimee!), but we're excited about visiting Sea World and touring the aircraft carrier. Morgan seems to understand that Daddy is leaving for a long time (although it's impossible for her to comprehend seven months - even I have trouble with that!). Allyson is clueless about what's going on. She'll just be happy that we're going "bye-bye" in the morning!

Thanks for keeping us in your thoughts and prayers during the next few days. If you'd like to e-mail Mark on the ship, his address is:

mark.kelso@cvw9.navy.mil

He may not write you back right away, but nonetheless, he appreciates the e-mails. He can't access the Internet, so don't send links to sites. Pictures need to be reduced to a relatively small file size. Just a few tips we've learned along the way.

I'll post an update over the weekend after we return from San Diego. I'm sure I'll have a ton of new pictures too!

Mark's Snail Mail address is:

LCDR Mark Kelso
VAW-112 Unit 25417
FPO AP 96601-6400

Love to you all!
Kristin

Saturday, January 13, 2007 12:29 AM CST

Good morning! Hope your weekend is off to a great start. We have lots of plans to spend the weekend together as a family and do as many things as we can! I'll update you at the end of the weekend and let you know what we've been up to.

I've posted new pictures so you can seeour happy, smiling girl again! The last batch wasn't so great...

Have a great weekend! More on Monday...

Here' another shout out about raffle tickets...

I received a call from the NFED this week asking me how many raffle tickets I wanted this year. FEBRUARY is Ectodermal Dysplasia Awareness Month... that means raffle ticket time! Last year, we sold 2280 tickets (thanks to MANY of you). This year, I've set a goal of 3000. I'll include all the details in another update, but start thinking about how you'd like to help the NFED meet it's goals (and help ME meet my goal!). Thank you in advance for your support.

Kristin

Tuesday, January 9, 2007 9:26 AM CST

Hello from a warm and windy California (thank you, Santa Ana winds!)! I'm happy to report that Morgan is feeling better and that her fever finally cracked after a week's time. She went to school on Friday, but came home exhausted and was asleep at 7:00 p.m. She slept through the night Friday and didn't awake until after 7:00 a.m. and was finally fever-free! Hooray! I had taken her to the doctor last Wednesday who said she had a virus that was just taking it's own sweet time to work its way out of her...

So on Saturday, Morgan went to karate and was thrilled to see Sensei Jackie and all of her friends again. She also got a haircut Saturday afternoon - her first since the BIG cut last summer. Morgan asked Jenna for a "trim of just one inch." She loves acting like a grown-up when visiting the salon. Mark and I worked our way through our garage on Saturday and got all of the Christmas decoration boxed up and put away. We now have both cars back inside the garage for the first time in weeks!

We began our Sunday morning with church services on base at Point Mugu. This is the same church we attended on Christmas Eve and really enjoyed the small congregation and laidback ambience. Morgan joined the other children on the altar during the kids' sermon and Allyson spent the hour in the nursery. We're hoping to return to this same service next Sunday and Morgan wants to go to "kids church". Following church, Mark to Morgan on a daddy-daughter date to Thousand Oaks where they saw a performance of Beauty and the Beast. Morgan's friend, Emma, and her dad, John (who is Daddy's friend and roommate on the ship) joined them. The girls and the dads seemed to have a good time seeing this 'adaptation' of Beauty and the Beast. (Some of the characters' names and songs had been rewritten!). Morgan loved having this special time with Daddy and is still talking about their 'date.'

I worked out at a new gym yesterday and really enjoyed it! I joined a new facility just before the new year because it offers childcare in the mornings. Hooray! Allyson was fine in the "Kids Zone" and the caregiver is a very loving woman who ran her own in-home daycare for 20 years. We're both looking forward to spending lots of time there in this new year. Today I'm trying a yoga class! We'll keep you posted on how things progress...

We're down to the final stretch before Mark deploys. Next Thursday, we'll head to San Diego for a couple of days of fun and site-seeing. I think Morgan will enjoy going on the aircraft carrier and seeing where Daddy sleeps, eats, works, flies, etc. I'm not sure how we're going to maneuver Allyson up the ladders and catwalks, but we'll figure something out!

I received a call from the NFED this week asking me how many raffle tickets I wanted this year. FEBRUARY is Ectodermal Dysplasia Awareness Month... that means raffle ticket time! Last year, we sold 2280 tickets (thanks to MANY of you). This year, I've set a goal of 3000. I'll include all the details in another update, but start thinking about how you'd like to help the NFED meet it's goals (and help ME meet my goal!). Thank you in advance for your support.

Have a great week! Safe travels to Teetay and Geep as they drive home from Georgia tomorrow!

Love,
Kristin

Tuesday, January 2, 2007 6:17 PM CST

Happy New Year!!!! Hope everyone survived the ringing in of 2007 and are on track with their new year's resolutions...

We had a great weekend and spent lots of time together as a family. On Saturday we went to the Santa Barbara Zoo. It was a perfect southern California day and we all enjoyed the great weather and sunshine. Morgan loved feeding several animals (a giraffe and sheep) and Allyson had a ball running "free" in the grassy park-like areas. Morgan also liked seeing the snakes and bugs in their special houses. Allyson couldn't have cared less about the animals, she just wanted to be on the move... and in any direction OTHER than the way the rest of us were headed! We had a such a good time that we bought a season's pass. I'm sure the girls and I will start enjoying monthly (or more often!) visits to the zoo.

I was "allowed" to sleep in until 8:00 A.M. on Sunday morning. I was awakened by Mark and Morgan singing "Happy Birthday" while they carried in a tray of blueberry muffins, fresh fruit, and coffee. I must say that sleeping in was probably the best gift I could have received! Morgan joined me for "breakfast in bed" and we ate muffins while watching cartoons. :-) Allyson had wished me "Happy Birthday" just after midnight when she decided to cry for over an hour in the middle of the night... We spent most of Sunday taking down Christmas decorations and trying to reorganize all the new stuff throughout the house. Mark cooked dinner for me at home and then we went to our neighbors' New Year's Eve party and had a BLAST!

Monday was a SLOW day as Mark and I were recovering from the party (oh, the up and down side of celebrating across the street!)... Morgan was also not feeling well (but for different reasons than Mark and I) and was pretty lethargic too. She ran a fever most of the day and slept a lot, ate nothing, and complained of a stomach ache. We managed to finish the undecorating at some point and watched a few bowl games in the process... Allyson didn't seem to notice that the rest of us were dragging and went about her business as usual - playing with her toys, eating ice and lollipops (the ONLY things she'll eat at the moment...), an generally staying out of trouble. Despite our physical woes, it was a Happy New Year for us four!

Morgan went to school this morning without a fever and claiming to feel better. By 10:30 A.M. I was picking her up and bringing her home to rest. Her fever is hovering around 100 degrees and she has no other symptoms. We're laying low this afternoon and skipping karate, drinking water, and watching cartoons/playing games. Mark and I are feeling fine today and Allyson seems to be fine for now. Let's hope Morgan's mystery illness disappears by tomorrow (she's terribly upset that she didn't get to catch up with her friends on the first day back after the holidays!) and that the rest of us stay healthy!

Hope your New Year is HAPPY and HEALTHY! Please keep Lynn Newman's family and friends - especially OUR dear friend, Holly Crandell - in your thoughts and prayers. Lynn's memorial service is tomorrow morning in Frisco, Texas. Holly will be speaking at the service to honor her dear friend and celebrate her short, but fulfilling life. May God's strength be with them all...

Love,
Kristin

Sunday, December 31, 2006 5:53 AM CST

HAPPY BIRTHDAY TO KRISTIN!!!

Here's wishing you a super and special day filled with all the joys and gifts of love you deserve! You are truly an amazing, fun and wonderful daughter, sister, wife, mother and friend. Have a happy, happy day and a great New Year's night and CHEERS to 2007!

We love you so much,
Your WHOLE family :) xoxo

Friday, December 29, 2006 9:18 AM CST

Good morning and Happy New Year's weekend! (is that really a THING??) We're slowly getting the house back together, trying to find places to fit new toys and clothes and all the wonderful Christmas gifts we all received. I'm dreading taking down all the decorations (didn't I just get them UP?!?!), but I won't be one of those people who still has a tree up in March (do such people exist??!!). We said good-bye to Teetay and Geep yesterday morning after a wonderful visit with them. There's a lot less flutter of activity without Geep busying himself in the kitchen and Teetay taking care of picking up, straightening, and organizing something throughout my house. We miss you both and are looking forward to our trip to YOUR house for Easter!

Mark received news this week that his deployment date has moved back to the original date, so he'll be around for about three more weeks. Of course, things could change (again!) at any time, so we're trying to enjoy ourselves and not worry too much about WHEN 'the day' will arrive. He's been back at work this week preparing schedules for the deployment and finalizing the operational details.

We're hoping to do some fun things with the girls this weekend.... perhaps a trip to the Santa Barbara Zoo, park, beach, etc. We don't have any big plans for my birthday/New Year's Eve - just spending time together. Our neighbors across the street are having a party, so we may stop by for a little while after Morgan and Allyson are asleep.

Wishing you a Happy and Safe NEW YEAR filled with fond memories of 2006 and anticipation of good things to come in 2007! Thank you for continuing this two-year journey with us!

Love,
Kristin

Tuesday, December 26, 2006 9:29 AM CST

Happy Day after Christmas! We had a terrific day celebrating the birthday of Jesus and the girls' visit from Santa. Allyson was overwhelmed by all the festivites and napped twice during the day. Of course, she woke up from her afternoon nap just as we were sitting down to Christmas dinner. She was cheerful enough and sat with Morgan and I at the end of the dining room table. Morgan was overjoyed with all of her 'loot' from Santa and everyone else. I don't think she's even 'discovered' all the great gifts she received. There was a constant whir of wrapping paper, gift bags, toys, accessories, and STUFF around her for much of the day!

It was great being together over this Christmas weekend. Yesterday was lots of fun observing Morgan and Allyson amongst the chaos of gifts! We shared many laughs and captured fond memories. It was a beautiful warm day here and we played outside and inside and everywhere! The only 'downer' of the day was the Cowboys' loss to the Eagles - however, Uncle Tommy was ecstatic over the Eagles' win and we all remained cordial to each other! :-)

Today we have to say good-bye to Grandma and Grandpa Kelso and Aunt Ashli and Uncle Tommy. Teetay and Geep will be here for another few days, and then it will be just the four of us! Mark is deploying to the middle east sooner than expected, so we have less than two weeks to go before his departure. We're hoping to squeeze in a Santa Barbara Zoo visit and weekend trip to San Diego before he leaves.

Wishing you all a safe end to 2006 and warm wishes for a happy start to 2007!

With love,
Kristin

Saturday, December 23, 2006 10:30 AM CST

Hey, hey, the gang's all here! We had a wonderful day celebrating Allyson's second birthday with the whole family. Everyone had arrived by 2 p.m. and Allyson awakened early from her nap, so we started our party soon afterwards. Morgan "helped" Allyson open her presents (which means she opened them all FOR her!). Ally was moderately interested in her gifts once the paper was off of them... her favorite gift was a Princess potty! Check out the picture on the Photos page.

Today we're off to see The Lion King in Hollywood. Aunt Ashli and Uncle Tommy will be at our house taking care of Allyson while the rest of us (who are able to sit still for the show - an ability NOT possessed by Allyson OR a 7-months pregnant Aunt Ashli) travel to Hollywood for lunch and the performance. We're busily getting ready for our outing and enjoying one another's company!

Hope you're enjoying this holiday weekend! Thank you for all the birthday greetings in Allyson's guestbook - it seems like the past two years have flown by (I know, everyone always says that, but it's true!). It's great to hear from so many of you!

Love and Peace,
Kristin

Friday, December 22, 2006 9:34 AM CST

HAPPY BIRTHDAY TO YOU! HAPPY BIRTHDAY TO YOU! HAPPY BIRTHDAY TO ALLYSON, HAPPY BIRTHDAY TO YOU!

You are loved by SO MANY, Big 2-year old! All the family arrives today and we're going to celebrate BIG TIME! Have a great day!



Wednesday, December 20, 2006 4:36 PM CST

Hello and Season’s Greetings! We’ve had a week full of holiday activities since Teetay’s arrival last Tuesday. Morgan’s Christmas Show at school last Wednesday was terrific! She danced and sang her heart out and perfectly made her announcement of the French Christmas song, “L’arbre de Noel”. We videotaped the whole show so that all of our out of town visitors can see her perform. Morgan’s Nutcracker ballet performance was also last Wednesday. She learned nine dances (each with a handmade accessory) and did a great job with her routines. Mark was able to leave work early to see her dance while Connie took care of Allyson. We had a ‘celebration’ dinner at Applebee’s (Morgan’s choice!) and enjoyed seeing Morgan relish in her “stardom” that night!

Allyson’s schedule has been ‘business as normal’ the past week. Teetay has helped Nancy and I with her intervention sessions. She’s doing a great job and is close to meeting most of the 24-month old milestones. Our biggest challenge during the therapy and intervention sessions is keeping Allyson focused on one task for longer that just a minute or so… She gets pretty distracted – typical 2-year old behavior though! We went to CHLA last Thursday for an ENT appointment. Dr. Geller wants to attempt to replace Allyson’s ear tubes again. She had the right one replaced in August, but it’s a very small tube and a larger on may serve her better. The left ear is still “gunky” and Dr. Geller can’t really tell what’s going on down there. He’ll attempt to put a tube in the left ear as well and/or repair the retracted ear drum (if it’s still retracted). We don’t have a date for the procedure yet, but I’ll keep you posted. Allyson will have to go under anesthesia, but the surgery will be short and she’ll come home the same day.

Morgan’s last day of school was Friday. On Saturday, Teetay, Morgan and I went to see a REAL Nutcracker Ballet at the Civic Center in Thousand Oaks. Morgan’s friend, Isabella from across the street, went with us. The girls were so cute in their plum-colored fancy dresses. We all loved the show – especially when it snowed on the audience at the end of Act 1. It was an especially cold day here which helped get us into the Christmas spirit and the spirit of the Nutcracker.

On Sunday, the girls went with Teetay and I to the commissary where we filled TWO shopping carts full of groceries! Morgan was a big help with keeping up with the list and selecting produce and cereal for all the company that will be arriving this week. I made a trip to Trader Joe’s yesterday and then back to base for bourbon, beer, and soft drinks (all the IMPORTANT stuff, right?). I think we’ve gotten everything we could possibly need to satisfy the eating and drinking desires of 10 people for 4 days!

We had fun on Monday with a trip to the mall to see Santa. Morgan wrote out a list of 5 things she wanted to ask Santa for (Thanks, Aimee, for that suggestion!) However, Morgan could only come up with 3 things for herself so she wrote down “wishes” for Ally to complete the list. For inquiring minds, Morgan asked Santa for: The Littlest Pet Shop, Baby Alive, and an Easy Bake Oven. She asked Santa to bring Allyson a baby doll wearing a purple dress and a shopping cart. Santa willingly accepted Morgan’s list and asked her if there was anything she wanted that wasn’t on her list. She replied, “no thank you. Just those three things would be fine.” Allyson was a squirmy-wormy when we approached Santa’s lap, so I sat down with her on my lap. After the picture, Santa happily ran around Santa and even laid down on the carpet in front of him! Very cute! Of course, no trip to the mall would be complete without playing on the newly remodeled playground and having lunch at Red Robin. We all napped upon returning home. It was a fun-filled day for us all!

Today we celebrated Allyson’s birthday with her playgroup friends. We had 10 kids here for lunch and cupcakes and it was a lot of fun. Morgan got to play with some of the older kids in playgroup (a three and four year old) and was quite the little helper with the party. Allyson played nicely with her friends and smiled SO BIG when we sang “happy birthday” to her! She didn’t even ATTEMPT to eat her cupcake… we’ll try again to sweetened her up when we celebrate her birthday with the whole family on Friday night! Teetay enjoyed seeing Allyson interact with her ‘baby friends’ and enjoyed meeting my “mommy friends” as well. It was a nice gathering and I think everyone had a great time!

Our next big “event” (other than the big 2-year-old birthday on Friday) is going to see the Broadway production of the Lion King on Saturday. Ashli and TG will stay with Allyson while Mark, Morgan and I – along with all four grandparents – head to Los Angeles for lunch and the matinee’ performance. We’re excited to introduce Morgan to “theater” (she saw The Producers when she was 2, but I doubt she remembers that!) and I know she’s going to LOVE this show! Even though I saw The Lion King in New York several years ago, I’m excited to see it again… and see it through Morgan’s eyes this time!

So, I think that captures all the FUN STUFF we’ve been up to… and what’s kept me from updating the journal for so long. In addition, I didn’t mention that Allyson has continued to have therapy sessions 3-4 times a week and Morgan has had karate class 2 times a week… and all that ‘normal’ stuff!

Hope your holiday week has been fun-filled! Merry Christmas to you and yours!

Kristin

Tuesday, December 19, 2006 5:38 PM CST

YIKES!!!! 10 days without a journal update.... there must be something BIG going on... Oh yeah, these Happy Holidays and all the festivities/events/activities/stuff that go along with them!

At least I've had a chance to post new pictures!

New journal update coming soon... before Christmas, I promise!

Love and Peace,
Kristin

Friday, December 8, 2006 2:34 PM CST

Holiday greetings! Yes, Christmas will be here in just over two weeks... I'm starting to feel like I'm accomplishing my holiday "to do" list!

It's been non-stop action here since Aimee's visit last weekend. We had a great time together - shopping and lunching in Santa Barbara last Friday. Aims was a big help to me as I got some much needed shopping done. The four girls hung out here Friday night while Mark 'made an appearance' at a squadronmate's farewell party. As Aimee mentioned, we watched some of the Oxnard Christmas Parade last Saturday - what a BIG disappointment! At least the weather was beautiful and we enjoyed being outside. Our lunch at Ventura Harbor was fun and Morgan and Allyson liked the arcade games and rides. Yes, Aimee and I sat at our respective computers Saturday afternoon while the girls (and Mark) napped and did some Internet shopping! Relaxing and FUN at the same time! Mark put up the outside lights on Sunday before coming down with flu-like symptoms. (He's still feeling a little under the weather...) I drove Aimee to LAX with Allyson in tow and returned home after lunch. I quickly changed clothes and headed off to our squadron spouse's holiday gift exchange. It was a fun-filled weekend full of laughs and smiles! Thanks, Aimee, for visiting us! We'll have to do it again soon!

This week has been super-busy as well. We started putting up the Christmas tree and lights on Monday night. On Tuesday, we had to drop off the 4Runner for some routine maintenance and new tires and then head to Point Mugu for the squadron's pre-deployment briefing (a family affair!). Mark left for San Diego Wednesday morning for three days of meetings and Morgan had rehearsal #2 for the Nutcracker ballet. After ballet, Morgan and I decorated the tree and she exclaimed that every ornament she unwrapped was her favorite! Morgan also marvelled at some of her homemade ornaments that she made "when she was a baby". She even commented on a couple of my homemade crafts from 30 years ago. I had to laugh when Morgan said, "Mommy, you did such beautiful art when you were a child. And it's okay that they're not perfect." :-) She really enjoyed putting all the ornaments on the tree and finished it all by herself on Thursday night.

Speaking of Thursday... that was a REALLY crazy day for all of us... let me see if I can paint a clear picture.... It started with Allyson's therapy sessions in the morning, a trip to the grocery store to buy baking ingredients for our playgroup's cookie exchange, baking one batch of cookie bars before heading to an eye doctor appointment for Allyson, picking Morgan up at school, heading home to bake more cookies, going to Morgan's karate class, shopping for teacher presents after karate, baking MORE cookies, running outside to see Santa as he drove through the neighborhood on a firetruck, etc., etc. Around 6:30 p.m., I was on the phone with my friend, Nicole, and Allyson walked through the kitchen with a spoon full of dripping yogurt in her hand and a tampon sticking out of her mouth. I died laughing! Allyson was the snapshot of what my day felt like! I wish I had been able to take a picture, but I was up to my elbows in cookie dough! Nicole got a kick out of my description of Allyson too, as her day/week/month was going similarly to mine. What is it about the holidays that makes you feel like you're going crazy??? At least I know I'm not the only one feeling this way...

This morning Allyson and I visited with our playgroup friends, made Christmas shirts for the kids, and swapped our cookies. We both had a lot of fun and it was good to catch my breath and hang out with some friends. I still have quite a bit of decorating to do around the house, but at least the tree is done, the stockings are hung, the lights are up, the Santa collection is set-up, etc. I even managed to mail a box of gifts to out-ot-town relatives yesterday as well. (I forgot to add that to the list of Thursday's activities!) I'm hoping to be "all done" by Monday and then I can enjoy the next two weeks!

We have two Christmas parties tomorrow. One at the base for all the E-2 squadrons and everyone's kids. Afterwards, we'll head to the Amigo Baby party (Pablo's Intervention Organization) and visit with Pablo, JanDee, and Nancy. We've had great weather all week, but rain is promised for tomorrow. Even if it rains, the parties shouldn't be affected. Morgan is looking forward to the parties and is counting down the days until Teetay arrives on Tuesday. We have a week full of activities next week too, but I'll wait until the next journal update to tell you about them!

Have a great weekend! Ho! Ho! Ho!

Kristin

Friday, December 1, 2006 1:11 AM CST

Hello and Happy December! I'm sitting here waiting for Mark to return from the airport with Aimee in tow. We're looking forward to spending a fun weekend with my best friend . Tomorrow we're heading up to Santa Barbara to shop, lunch, visit, etc. Connie will be watching Allyson and Morgan will be at school. (Check out the photos page for BIG NEWS about Morgan and her Kindergarten accomplishments!)

It's been a super-busy three days since we returned from Atlanta. Allyson's had TWO doctor's appointments, THREE intervention services, and FOUR therapy sessions! Morgan has had 1.5 hours of karate instructions and 2 hours of ballet! Somehow with ALL that, I managed to go grocery shopping AND hit Toys R Us for some Santa shopping. Don't ask me how... I think I was on some kind of autopilot. Both girls have been a little out of sinc with their sleep patterns since we returned from our Thanksgiving trip. Allyson is "off schedule" and has been waking up at 6:30 each morning. I didn't think she had adjusted to east coast time over Thanksgiving, but she's proving me wrong now! Let's hope that she starts sleeping a little but later this weekend so that our house guest can enjoy some peace and quiet in the mornings. Morgan has also had a case of the "early birds" and was awake before 6 A.M. both Tuesday and Wednesday mornings!!! I think she's back on track now. Keep you fingers crossed!

Allyson saw Dr. Davidson, her Opthamologist, on Tuesday. He tested her vision and she still has astigmatism in both eyes. It hasn't gotten any worse in the past six months, but his hope was that it would go away since our last visit to him. He said that she didn't need corrective lenses YET because the astigmatism is very mild. We'll see Dr. Davidson again in six months and go from there. I also asked him about her left eye. Allyson seems to be squinting MOST of the time with that eye or it seems like she isn't able to open it all the way. Dr. Davidson deferred my questions to the "lid specialist" in the practice with whom we have an appointment next Thursday. I hope he'll be able to help me understand what might be irritating her left eye.

Yesterday we had an appointment with Dr. Goldie, the Pediatric Neurologist. He basically is just following Allyson's progress and thinks that she's developing great! We agreed some time ago that she didn't suffer from any neurological defects and Dr. Goldie suggested that he continue to follow her as she approaches pre-school age.

Both therapy sessions at the Therapy Unit went well on Tuesday afternoon. Allyson walked up and down the stairs (four steps) at the facility UNassisted. We're continuing to work on stairs at home too. Her Physical Therapist is so pleased with her progress that we may be reducing her physical therapy to once a month (vs. once a week). It's encouragin to hear that she's doing so well and is almost at her age level developmentally. However, I'm hesitant to cut back on her services because I believe that Allyson has been so successful at achieving these goals BECAUSE of the therapy she's received. We'll keep you posted on that one...

Morgan continues to love her karate class and is getting stronger each week. She enjoys her teacher and even told Sensei Jackie that she loves her! It was a sweet moment between Morgan and the outwardly TOUGH, Sensei. :-) The Nutcracker Ballet classes began on Wednesday. Morgan and her classmates are going to learn NINE different dances and are making a prop for each dance. Yesterday they made tambourines for the Spanish dance, fans for the Chinese dance, and gold crowns for the Sugar Plum Fairy dance. Morgan seemed really excited about the crafts and the dancing. I can't wait to see the big show on December 13th!

Well, I think I just heard the car drive up. Hope you all have a great Decemeber weekend. More later...

Love,
Kristin

Tuesday, November 28, 2006 1:49 PM CST

We're BACK from another wonderful cross-country trip! Enjoy the new photos... I only have a minute before Nancy arrives for Allyson's afternoon intervention, but I wanted to get SOMETHING posted before the day got away from me!

Our trip to Georgia was lots of fun! Morgan and Allyson travelled pretty well and Mark was a good 'helper' to me! We enjoyed being at Glenn, Merideth, and Spencer's house and loved spending time with Grandma and Grandpa Kelso as well as Mer's parents, Gram and Gramps Buck. We even squeezed in a Sunday morning visit with Aunt Grammy/Aunt Dale who lives on the opposite side of Atlanta from Glenn and Merideth. I have lots of cute stories to tell and will recap our Thanksgiving days when I have more time.

Of course, this is another busy week for us. Allyson saw the eye doctor this morning and has TWO therapy sessions this afternoon. Morgan is back at school today with karate this afternoon. Her Nutcracker Ballet class starts tomorrow (a 2-hour dance/craft class). Allyson has an appointment with her neurologist this week as well. Aimee from Minnesota is visiting this weekend after she attends a conference in San Jose and we have fun things planned with her! And at some point, I need to get the Christmas decorations up! Whew!

Hope you all had a fun-filled Thanksgiving weekend. Enjoy the warm weather, you east coasters... We're chilly here, but a warm-up is expected by the weekend!

Love,
Kristin

Monday, November 20, 2006 11:52 PM CST

Hello and Happy Thanksgiving!!!! Guess who got their Christmas pictures taken over the weekend?!?!?

We've been super-busy (hasn't everyone????) since our return from Virginia a week ago. Now, we're headed to Georgia on Wednesday to spend Thanksgiving with Mark's family.

I'll try to finish this journal update on Tuesday - complete with recaps of dr's appts, ballet recitals, garage sales, surfing (for Mark), etc. from the past week.

Hope everyone is enjoying this short week and looking forward to the holiday weekend ahead!

You're always on our minds...

Kristin

Wednesday, November 15, 2006 9:22 AM CST

We're BACK in California and all is well!

The shower weekend was great! Our flights were uneventful and both Morgan and Allyson travelled well. Morgan actually napped on both flights LONGER than Ally did. However, Allyson was only content to be in her carseat for a limited time while awake, so I juggled her and played with her and switched activities frequently. She actually watched a few videos with headphones on and was happy to be sitting in her seat NOT strapped in or on my lap. Morgan was perfect on the trip. She's now memorized the safety card and can explain what all the pictures mean. Morgan was also a big help with Allyson and they took turns picking out their DVDs to watch. Sometimes I felt like I was wrestling an alligator with Allyson ... but we survived!

I went out to dinner with Ash, Rebecca (from Oakland, CA), and Kristi (from Chicago) on Friday night and spent the night at Ashli's. We had drinks and snacks at Ashli's and then a yummy dinner in Georgetown and then more drinks back at her place. (Ash wasn't drinking of course!) Our girls night out was great! On Saturday, I left Ash's at 7 a.m. to go back to Teetay and Geep's house and prep for the shower, run to Wegman's with Dad to get party platters(Geep got to show off "his" store to me and introduce me to his meat dept. buddies!) and then back home again to get everything ready for the shower. Megan, Melissa, Jessica, and Gina arrived from Philly and the big (Morg and Jess) and little (Ally and Gina) girls played really well together.

The shower was great - even though it was really warm (like 80 degrees), and I was wearing fall clothes and sweating in my wool pants and sweater - oh well! I think everyone had fun and Ashli got tons of gifts for Lester. There were about 32 people there - everyone from former teacher friends of Teetay's to neighbors, high school and college friends, former coworkers of Ashli's, spouses of TG's college friends, and of course, the family. The Philly gang spent the night at my parents' house while Ash, Reb, and Kristi went back to Ashli's house. It was fun hanging out with them after the shower as well. Morgan and Jessica had a 'sleepover' in Morgan's bedroom and giggled and stayed up until 10:30 pm. It was cute to watch them! In the morning, the Philly girls left after breakfast, but not before Gina got in the crib with Allyson and they played for awhile - jumping in the crib and tossing the ducky to each other. Very Cute!

On Sunday, Geep had to work so I got to prepare "Thanksgiving" dinner for all of us. TG and Ashli came over for dinner and since we're all going to be apart this Thanksgiving, Geep thought it would be nice to have our turkey meal on Sunday night. So, since he was working, I did most of it! I didn't mind at all ... I guess it was a good "pay back" for all the Thanksgiving Eves that I worked late in my retail past and he was at our house getting everything prepared for the feast (Morgan's word for that meal.) Morgan even sat with us in the dining room and ate most of the 'feast' food. I told her that it was good practice for the REAL Thanksgiving next week. She seemed happy to be sitting with the grown-ups and making toasts with her wine glass of milk!

Ashli and I got to have our own slumber party Sunday night when she stayed over at Teetay and Geep's. I must say that Mommy-to-be Ashli looks really cute pregnant and just has a belly poking out - the rest of her looks "normal". My friend, Aimee, wrote me after viewing the photos and said "it should be ILLEGAL to look THAT good while pregnant!" Yes, Ashli looks fabulous, but behind that smile she was in a lot of pain over the weekend. Little Lester was situated on her sciatic nerve or something and making her really uncomfortable. She went to the doctor on Monday and had it all checked out and everything's fine, so that's good. I tried to help massage the trouble spot - she could hardly walk or get out of a chair... I hope that she'll feel better soon. I know how miserable back pain can be! She was a trooper and is already showing signs of what a Super Mom she's going to be!

We're back in full-swing with therapies and appointments this week. On Thursday, Allyson has her annual craniofacial team appointment at CHLA. This is the appointment where we meet with all the specialists from the Plastic Surgeon, ENT, Dentist, Speech/Hearing, etc. We have to be at the hospital by 7:30 a.m., so Morgan will stay with a neighbor in the morning and get a ride to school with them.

Mark may be home Wednesday night or sometime on Thursday. Morgan has asked me everyday since we got home, "when is Daddy going to be back?" (I think she expected him to be here when we got home on Monday.) Morgan has her final ballet class todayw where she'll perform a special dance for the parents. Connie is taking care of Allyson, so I should be able to take some pictures during the "recital." We're having a community garage sale this weekend, so I'm busily preparing for that! Always something going on here, right?

Hope you're having a great week! Thank you for always being there for us!

Love,
Kristin

Wednesday, November 15, 2006 9:22 AM CST

We're BACK in California and all is well!

The shower weekend was great! Our flights were uneventful and both Morgan and Allyson travelled well. Morgan actually napped on both flights LONGER than Ally did. However, Allyson was only content to be in her carseat for a limited time while awake, so I juggled her and played with her and switched activities frequently. She actually watched a few videos with headphones on and was happy to be sitting in her seat NOT strapped in or on my lap. Morgan was perfect on the trip. She's now memorized the safety card and can explain what all the pictures mean. Morgan was also a big help with Allyson and they took turns picking out their DVDs to watch. Sometimes I felt like I was wrestling an alligator with Allyson ... but we survived!

I went out to dinner with Ash, Rebecca (from Oakland, CA), and Kristi (from Chicago) on Friday night and spent the night at Ashli's. We had drinks and snacks at Ashli's and then a yummy dinner in Georgetown and then more drinks back at her place. (Ash wasn't drinking of course!) Our girls night out was great! On Saturday, I left Ash's at 7 a.m. to go back to Teetay and Geep's house and prep for the shower, run to Wegman's with Dad to get party platters(Geep got to show off "his" store to me and introduce me to his meat dept. buddies!) and then back home again to get everything ready for the shower. Megan, Melissa, Jessica, and Gina arrived from Philly and the big (Morg and Jess) and little (Ally and Gina) girls played really well together.

The shower was great - even though it was really warm (like 80 degrees), and I was wearing fall clothes and sweating in my wool pants and sweater - oh well! I think everyone had fun and Ashli got tons of gifts for Lester. There were about 32 people there - everyone from former teacher friends of Teetay's to neighbors, high school and college friends, former coworkers of Ashli's, spouses of TG's college friends, and of course, the family. The Philly gang spent the night at my parents' house while Ash, Reb, and Kristi went back to Ashli's house. It was fun hanging out with them after the shower as well. Morgan and Jessica had a 'sleepover' in Morgan's bedroom and giggled and stayed up until 10:30 pm. It was cute to watch them! In the morning, the Philly girls left after breakfast, but not before Gina got in the crib with Allyson and they played for awhile - jumping in the crib and tossing the ducky to each other. Very Cute!

On Sunday, Geep had to work so I got to prepare "Thanksgiving" dinner for all of us. TG and Ashli came over for dinner and since we're all going to be apart this Thanksgiving, Geep thought it would be nice to have our turkey meal on Sunday night. So, since he was working, I did most of it! I didn't mind at all ... I guess it was a good "pay back" for all the Thanksgiving Eves that I worked late in my retail past and he was at our house getting everything prepared for the feast (Morgan's word for that meal.) Morgan even sat with us in the dining room and ate most of the 'feast' food. I told her that it was good practice for the REAL Thanksgiving next week. She seemed happy to be sitting with the grown-ups and making toasts with her wine glass of milk!

Ashli and I got to have our own slumber party Sunday night when she stayed over at Teetay and Geep's. I must say that Mommy-to-be Ashli looks really cute pregnant and just has a belly poking out - the rest of her looks "normal". My friend, Aimee, wrote me after viewing the photos and said "it should be ILLEGAL to look THAT good while pregnant!" Yes, Ashli looks fabulous, but behind that smile she was in a lot of pain over the weekend. Little Lester was situated on her sciatic nerve or something and making her really uncomfortable. She went to the doctor on Monday and had it all checked out and everything's fine, so that's good. I tried to help massage the trouble spot - she could hardly walk or get out of a chair... I hope that she'll feel better soon. I know how miserable back pain can be! She was a trooper and is already showing signs of what a Super Mom she's going to be!

We're back in full-swing with therapies and appointments this week. On Thursday, Allyson has her annual craniofacial team appointment at CHLA. This is the appointment where we meet with all the specialists from the Plastic Surgeon, ENT, Dentist, Speech/Hearing, etc. We have to be at the hospital by 7:30 a.m., so Morgan will stay with a neighbor in the morning and get a ride to school with them.

Mark may be home Wednesday night or sometime on Thursday. Morgan has asked me everyday since we got home, "when is Daddy going to be back?" (I think she expected him to be here when we got home on Monday.) Morgan has her final ballet class todayw where she'll perform a special dance for the parents. Connie is taking care of Allyson, so I should be able to take some pictures during the "recital." We're having a community garage sale this weekend, so I'm busily preparing for that! Always something going on here, right?

Hope you're having a great week! Thank you for always being there for us!

Love,
Kristin

Sunday, November 5, 2006 6:23 PM CST

Hello and Happy November! Sounds like most of the country has had nice fall-like weather this weekend. We've been 'hotter than normal' and are actually HOPING for cooler temps!

Allyson is feeling better after getting some antibiotics on Wednesday. She had some sort of sinus infection/virus that was interfering with her breathing especially at night. She also had so much mucous in her nose/mouth/throat that it was causting her to gag and spit up after almost every feeding and/or every nap - NOT a lot of fun! Allyson is still waking up at night (this has been her 'welcome home' gift to us after sleeping soundly for Teetay while we were in Hawaii...), but she's not waking up as often and we're not having to 'tend' to her in the night during the past couple of nights. Allyson has been much livelier and acting like her usual self since Thursday evening (about 24-hours after her first dose of meds). The only down-side to the week is that she's broken out with a bad case of eczema on her face, arms, and legs. I haven't been able to pin down the breakouts to a specific cause, so we're just treating it with her usual lotions, aquaphor and cortisone cream. It's been such a long time since she's had an outbreak of ezcema, that it caught be by surprise. It doesn't seem to bother her and I'm hoping her skin will be all cleared up before we travel later this week.

Morgan had a mini ballet performance yesterday. All of Teacher Pam's classes did a short demonstration at the ArtWalk Festival in Ventura. Morgan said she was nervous when we first arrived, but was fine when it was time to perform. We also enjoyed some of the other exhibits - playing with homemade hula hoops and drawing a dolphin with a teacher from the Young Rembrandts program. Morgan had fun and Allyson 'tolerated' the outing and the heat! After we got home, Morgan played at Isabella's house and had a great time there!

Today we all went to a birthday party for a one-year old boy - "old" friends who have recently joined Mark's squadron. We also met some new friends and saw some old ones from other squadrons. It was a fun get-together! Morgan and Allyson looked cute in their party clothes and actually posed for a decent picture together before we left the house (see the photos page.) Maybe there's still hope that I'll capture that 'perfect' picture one of these days!

We had some exciting news this week regarding Allyson's 'road to stardom.' The NFED was contacted by ABC News about wanting to do a series of reports about Ectrodactyly and/or EEC Syndrome. The NFED staff contacted me to see if we would be interested in talking with ABC. Of course, I said "yes!" On Thursday, I spoke with a producer from ABC for about fifteen minutes and talked with him about Allyson, EEC Syndrome, the NFED, other families we'd connected with, Rally for Ally, etc. He wasn't very informed and thanked me for my knowledge on HIS subject matter. I expect to speak with him again in the coming weeks and perhaps do an on camera interview... who knows? He said they are in the initial stages of gathering information for the "Medical Mysteries" series that they plan to air in January. So, we'll keep you posted and let you know if/when we're going to be primetime TV stars!

Mark leaves tomorrow for another 10 days on the carrier. This is the final det before his deployment, so we're looking forward to having him home for a couple of months after this exercise. Morgan and Allyson have their usual activities this week and I'm hosting playgroup at our house on Wednesday morning. On Thursday, we'll fly to Virginia, spend the long weekend at Teetay and Geep's house and be in town for Aunt Ashli's baby shower next Saturday. We're looking forward to seeing everyone - especially Aunt Ash and her 25-week big belly. Morgan's anxious to see 'cousin' Jessica too (and Nala as well!)

Hope you have a great week!

Love you all!
Kristin

Tuesday, October 31, 2006 11:13 PM CST

HAPPY HALLOWEEN! Hope everyone had a super-scary and really boo-tiful Halloween! We had a busy day filled with lots of activities AND costume changes for both Morgan and Allyson, but it was fun as well!

We all went to Morgan's school this morning to see their annual Halloween costume parade. It seems like Tinkerbell and Disney Princesses are still popular among the Preschool and Kindergarten girls... Spiderman was big among Preschool boys and Power Rangers were the "in thing" for Kindergarten boys. Everyone over six years old was dressed pretty scarily - both boys AND girls! The parade was fun to watch and Allyson enjoyed playing on the playground by herself while the parade was happening.

Allyson went to the Therapy Unit after lunch and wore her Tinkerbell outfit for her OT and PT sessions. She had fun on the 'haunted' obstacle course and made a witches brew out of cheerios, ice chips, and gummy worms. Ally hasn't been feeling well the past few days - congestion and a sore throat (we think!), so she hasn't been her usual jovial self, but she hung in there for her therapy today. I cancelled her late afternoon early intervention so that she could get another nap in before trick-or-treating tonight.

We all went out trick-or-treating this evening with a gaggle of neighborhood friends. Morgan was the leader of the pack and ran from house to house with Parker (a vampire), Isabella (Tinkerbell), and David (a storm trooper). We had a lot of fun and Allyson seemed to like the whole trick-or-treating deal too. She attempted to walk up to a couple of houses, but was more interested in seeing the other kids in costume than actually going to the door and getting candy. Morgan asked for candy "for her baby sister" at several houses... sometimes when Allyson was right beside her in Teetay arms. It was a perfect night for trick-or-treating... cool, but not cold and clear too. I'm sure next year Allyson will be one of the leaders of the pack... as long as we steer her in the right direction and away from the middle of the street!

As I mentioned in the last journal, Allyson got her cast off yesterday. (You can see her feet in TWO shoes on the photos page). She's doing well, although the top of her right foot seems a little sensitive and tender. There's still a scab on top of her foot which has bled a little since we got home, but overall she's fine. She LOVED taking a bath with Morgan last night and getting that foot cleaned up and her leg and foot moisturized. I'll post some before and after pictures of her right foot later this week.

Teetay's bags are packed and we'll head to the airport tomorrow morning after Morgan goes to school. It's been great having her here for the past three weeks and I'm so thankful that she could help me out during and after Allyson's surgery and could take care of Morgan and Allyson while Mark and I went to Hawaii. What a blessing... how lucky we are! We're looking forward to seeing Teetay (and Geep and Aunt Ashli with her big "lester" belly and Uncle Tommy too!) in just nine days when we fy out to Virginia to spend a long weekend at their house over Veteran's Day weekend.

Thanks for your continued support for Allyson and all of us and Happy November!!!!!

Love,
Kristin

Sunday, October 29, 2006 11:25 PM CST

We're BACK! Our vacation in Hawaii was wonderful - 10 beautiful days in Paradise! We had lots of fun exploring the island by car and by foot, lounging at the pool and on the beach, taking a surfing lesson, bodyboarding, hiking, seeing Pearl Harbor and the Arizona Memorial... and of course, eating and drinking up the 'local flavors.'

I was thrilled to see Morgan and Allyson Friday morning when they woke up. Getting great big hugs and kisses from both of them was 'the best part' for sure! Both girls were pretty close to 'perfect' for Teetay while we were gone. Teetay, of course, did a terrific job filling my "big" shoes (ha!) and didn't seem any worse for the wear on Friday. After all, I learned how to be a mom from Teetay, so it's no surprise that she was able to "be me" for 10 days! :-) Thanks, Teetay, you're the BEST!

I think my favorite days of our vacation were the days we took hikes around the island. Last Sunday, we visited Diamond Head and hiked the trails to the top. We arrived early and beat the heat (a little). The views were spectacular - there I go using one of Teetay's words! The hike wasn't too challenging... there are two sets of stairs - one 75 steps straight up and another with 99 steps... there's also a metal spiral staircase at the end which was a little scary, but we made it too the top. On Wednesday, our final day in Oahu, we hiked into the rainforest-junglesque area in the center of the island. We climbed over creekbeds, rocks, and through the red mud until we reached the trail's end at the foot of Manoa Falls. The waterfall stood 600-feet up from where the trail ended and was quite a spectacular sight as well! The hike down the trail was a little slippery with the mud, but we managed not to 'go splat' and remained relatively clean. We treated ourselves to hearty meals after our hiking adventures and really enjoyed seeing such diverse areas of the island.

Another highlight was meeting Cat Potter and her husband, Dave, and kids, Bobbi and Darren. We all met up at the pool at the Hale Koa hotel and spend the afternoon visiting and swimming and having a great time. Cat and Dave are so warm and down-to-earth and Bobbi and Darren are super-cool kids. Mark and I both enjoyed our time with the Potter family and are so happy we could connect PHYSICALLY after communicating via the Internet for almost two years. Mark was especially impressed with Darren and thought he was cute and smart and full of energy and just like any 'typical' 4 1/2 year old. Cat commented that it was good for them to meet another family who was walking in their shoes having a child affected with ED. I think Mark felt the same way since it was also the first time he'd met or seen another child affected like Allyson. I hope we'll continue to see each other at future conference or even back on the east coast if the military should send us both that way! Thanks, Cat and family, for taking the time to spend your Saturday with us! ;-)

Of course, we attended a traditional luau at the Polynesian Cultural Center and joined our friends, Beth and David Lutz (who were also vacationing in Waikiki) and their college friends, Mike and Jackie Anderson. The luau was fun and the Hawaiian food was great. Afterwards, we saw a fantastic (new adjective) Polynesian show that highlighted the cultures of Tahiti, Fiji, Samoa, Tonga, Aerotoa (aka New Zealand), and of course, Hawaii. The show was filled with native dancing, singing, and fire dancing, flame throwing and fire-eating (of course!) THAT was the highlight of that evening and we all had a great time!

We went to a Halloween-fest at the base at Point Mugu on Saturday and Morgan was dressed as a Princess Ballerina and Allyson is Little Red Riding Hood (as seen in this pic with Teetay). It was fun seeing some of our friends and their kids in costume. The girls enjoyed the activities and Morgan won some prizes playing various games.

Today we did NOT get that extra hour of sleep as everyone woke up earlier than normal... Allyson was even up BEFORE Morgan today! After a leisurely morning, Teetay and I washed the car while Morgan and Isabella (and her brother, Hunter) played with chalk in the driveway. While Morgan's impromptu playdate continued, Allyson continued her LONG a.m. nap. The four girls went to the Farmer's Market with Morgan and Allyson dressed in costumes #2. Morgan was a Tea Party Princess today and Allyson was Tinkerbell. We've yet to decide which costumes will be worn on Tuesday night! Morgan helped scoop out a pumpkin this afternoon before Daddy carved it. (More pictures to follow tomorrow). All in all, it was a great weekend and we're still glad to be home!

Allyson's cast comes off on Monday. Teetay and I will drive to LA after dropping Morgan off at school. We can't wait to see Ally getting around on her two "new" feet. She's practically running now (with the cast), so I'm sure she'll be even faster now! I'll post some pictures of her right foot later in the week as well. I have a feeling that there will be too many pictures and not enough website space to post them this week...

Hope you all have a happy and safe Halloween! BOO!

Kristin

Tuesday, October 17, 2006 6:37 AM CDT

ALOHA! We're OFF to Hawaii bright and early this morning! Yes, all is well there following the earthquake on Sunday. Teetay is ready.... the girls are ready... and we're SO ready!!!

We'll try to check-in with you all from a cyber-cafe somewhere in Pineapple Land. Looking forward to relaxing and soaking up some rays and seeing the sights of Honolulu and Waikiki.

Surf's up! Gotta run! See you in ten days!

Kristin and Mark

Wednesday, October 11, 2006 2:14 PM CST

NEWS FLASH FOR INQUIRING MINDS... (AIMEE!)

Leave it to Ashli to stray off the "beaten path"... BOY are we excited about the news of her baby's sex!




Get it?!?!? :-) Notice the NEW BLUE colors on the home page?? "Lester" really is a BOY! Hip Hip Hooray! Time to go shopping!!!!!!!!!!!!!

Tuesday, October 10, 2006 8:26 PM CDT

Hello everyone! Here's a picture of Allyson before surgery yesterday... she was as happy as can be after having her Verced (aka 'happy juice'!)

As Ashli posted, Allyson's surgery went very well. Dr. Kay did essentially the same procedure on her right foot that he had on her left. He did NOT need to remove one of her metatarsals nor did he need to sew any of her bones together. He simply (easy for ME to say!) removed fat pads, skin and tissue and brought her toes closer together. He said that her right foot actually looked a little narrower than her left, but that they were essentially equal widths. Allyson's cast is "soft" this time (although it really looks the same). Once it's time to remove the cast, Dr. Kay will be able to remove the material himself vs. having to cut the cast off with the saw. We'll have a post-op appointment next Monday and then another appointment 2-3 weeks later when the cast will be removed.

Allyson's recovery last night (and today) went great. She was given Caudel (a numbing medication given in the back between her spine and tailbone - similar to an epidural) right after surgery. After all her previous surgeries, she was given Morphine. Although she didn't have a negative reaction to Morphine per say, Allyson was always very jerky in her movements and didn't seem to rest peacefully following her previous operations. It seemed to take her 'awhile' to come out of it. Anyway, the Caudel was great and Ally slept soundly for a few hours post-op, then she was awake and lucid for a few hours. The first time she opened her eyes was when she was being wheeled to her room and Morgan was standing near her bed. Ally smiled when she saw Morgan and Morgan said, "Allyson, I'm so happy to see you. You're all better now." It was so sweet! Her night was great and she slept through most of it. She didn't stir when the nurses did their vital checks or administered her medicine. During the two times she awoke during the night, she never cried and quickly went back to sleep without me having to take her out of the crib. So, I slept pretty well... for hospital sleeping. Allyson's roommate was pretty quiet and aside from the occasional beeping of various monitors and 'nurse traffic' in and out... it was a really good night. The BEST of my overnight hospital stays thus far...

It's now Wednesday morning and Allyson continues to do well at home. She's walking pretty well on soft surfaces like the carpet, but is more hesitant on the hard floor. She napped at her regular time yesterday afternoon and slept peacefully through the night. I gave her a dose of Motrin at naptime and bedtime and that seems to control whatever pain she might be having. Allyson has eaten well and taken her formula through the g-tube without any problems. I'm sure she'll continue to be a little trooper in the coming days!

Thanks for keeping her in your thoughts and prayers. I'm hoping that we're done with surgeries and hospital stays for while! Allyson's been through a lot and is amazing little spirit! I know you all know that... I'm just saying it too!

Our schedule returns to normal today with Allyson's therapy sessions, Morgan's ballet class, grocery shopping, etc. Never a dull moment here!

We're anxiously awaiting Ashli's call later today to let us know whether "Lester" is a boy or a girl! Can't wait to shop either way!

Love to you all!
Kristin

Monday, October 9th, 2006 - 1:35 PM ET / 10:35 AM PT

ALLYSON IS OUT OF SURGERY! Hooray, another successful surgery for Miss Ally! Today was foot surgery for the right foot and the docs did NOT have to remove the extra bone in her foot because it turns out it is more narrow than the left so there was no need. She'll be in a "wrap cast" this time as opposed to the hard cast (but I think Morgan can still color on it :) Ally is in recovery now and doing well.

I am sure Kristin will have a more in-depth update in the coming days... She'll stay overnight at CHLA w/ Ally tonight and be home sometime tomorrow.

Thanks to you all for your thoughts and prayers and emails today - and everyday!

Love,
Aunt Ashli


Saturday, October 7, 2006 9:52 AM CDT

Happy Anniversary to US! Mark won't be home for another week and our Hawaii trip is in 10 days, so we'll just postpone celebrating until then...

I'll spend today with my two favorite girls. Morgan has ballet this morning and then I promised her a trip to the mall. I have Gymbuck$ to redeem and I have my sights set on Christmas dresses for Morgan and Allyson. They should just about wipe out the buck$ I have. We'll probably go out to lunch and head home this afternoon. Morgan wants to play with Isabella and I have some preparartions to do before Teetay arrives tomorrow and we head to the hospital on Monday morning.

Allyson's appointment with the Speech/Feeding specialist was very informative. Dr. "T-C" (what's with all the letter names???) was extremely personable and took a genuine interest in her case. Allsyon's OT (JanDee) and SLP (Deborah) were also at the appointment. Dr. T-C steered us in a slightly different direction regarding Allyson's speech. She said to focus on the vowel sounds since those are the sounds that Allyson is making on her own. The consanants will come later. Dr. T-C was hesitant to evaluate the 'degree' of her speech delay and explained that we don't really KNOW whether she's delayed or not, because she hasn't ATTEMPTED to make most consanant sounds. We can only say for certain that she's delayed in her ATTEMPT to make these sounds, but whether there's a deficit in the SPEECH... that remains to be seen. I hope I explained that sublte distinction clearly. Dr. T-C didn't offer a lot of help with the feeding situation, but offered encouragement and a few tips that we might try. We all agree that she needs to be hungry to eat (duh!), but getting to that point is easier SAID than DONE.

Yesterday we went to CHLA to complete Allyson's admitting process for her surgery on Monday. After waiting for over an hour and a half before we finally sat down with the Nurse Practioner (fortunately Allyson napped in her stroller and I had a really good book to read!), we covered Allyson's medical history and meds. The NP said that we really didn't have to make that trip yesterday - we could have covered everything Monday morning before surgery. Since Allyson is so healthy and she's had surgery at the hospital before (5 times), and no labs or x-rays are required, we didn't need to be there. Great! (sarcasm) She was very nice and I told her I didn't mind since I had to see the PA in Orthopedics anyway because a history and medical exam is required by the surgeon's office within 30 days of the surgery. So, I thanked the NP and went to the outpatient building to the Orthopedic Clinic. When I arrived, I was surprised to see everything closed up and no people ANYWHERE. I milled around a bit and ran into one of the radiology techs who told me that the clinic was closed on this particular Friday. Great, again! So, there was nothing I could do and I essentially wasted the entire day! UGH! We'll have to complete the exam prior to her surgery Monday a.m.

Later yesterday, the hospital called with Allyson's surgery time. We have to be at the hospital at 7:00 a.m. on Monday (just like the last surgery) and I'm estimating that her surgery will start around 9:00 a.m. PST. She and I will stay overnight and be home sometime Tuesday afternoon. Morgan and Teetay will spend the day at the hospital, but will come home Monday night so that Morgan can go to school on Tuesday and karate class. She has her first belt test next Saturday, so I don't want her to miss any classes next week.

Hope you have a great weekend! Sorry to hear it's so soggy on the east coast. Hope the sun will peak through in time for the wedding-goers and for Michelle and Dirk on their special day!

Kristin

Tuesday, October 3, 2006 1:36 PM CDT

Greetings from a fall-like day here in California! I know many of you are experiencing an "Indian Summer" in the midwest and on the east coast, but we're headed for Fall here... Hope you're having a great week!

We had a fun weekend. Saturday was crazy-busy travelling to a doctor's appointment, gymnastics class, and pumpkin patch and logging almost 200 miles on the car between the three... I've posted some pictures of the girls at the pumpkin patch. We had a great time with my friend, Heather (who's three weeks from her due date with baby girl #2), and her daughter, Brenna (2 1/2 years old). Morgan helped "look after" Brenna and held her hand often while we were walking throughout the festival. Allyson napped for much of our visit, but was awake long enough to enjoy the hayride and stumble through the pumpkin patch. There was an Ocktoberfest theme and it was fun hearing the German music (especially the accordian, Geep!) and tasting brats, sauerkraut, and German potato salad - YUMMY!

Ally's appointment with Dr. See went well. She did not bring up the "S" word (surgery), so that option has been tabled for now. We'll keep treating Allyson with medication for the reflux and motility issue and wait until she's older and can actually TELL us what's going on inside when she eats. The good news is that Allyson gained a pound over the past three months and continues to follow her own curve just below the 50th percentile. She measured over an inch longer and now stands at 32-inches tall. The BIG news is that Dr. See has asked me to change her feeding regimen with the hope of making Allyson hungrier during the day. I still need to work out the "kinks" like specific feeding times and volume/feeding that will work best with our daily schedule, but we're moving towards tube feeding Allyson more at night and less during the day. We won't completely transition to the new routine until after her right foot surgery and our trip to Hawaii. I don't want to alter things too much with everything else that's going on! Dr. See increased the dosages of Allyson's meds in order to help minimize the effects of her reflux. The goal is to have Allyson gain TWO pounds by her next visit in January. We hope to attain this goal through more food orally and less through the tube.

Later this week, we have two appointments. On Thursday, we're meeting with a Speech Therapist and PhD who specializes in treating children with clefts who have speech and feeding difficulties. She works with the Ventura Cleft Team and has monthly appointments here locally. We've been trying to see Dr. Trost-Cardamon for some time, and I'm anxious for her evaluate Allyson and help us over this "feeding hurdle." On Friday, we'll travel to CHLA to finalize Allyson's pre-op and surgery registration requirements. We anticipate that she'll be first for surgery (probably starting at 8 a.m. PST) on Monday, Oct. 9th, but won't get confirmation until Sunday afternoon.

Morgan and Allyson are excited to see Teetay on Sunday. We'll travel to LAX to pick her up and then TRY to get a good night's sleep at home before heading to the hospital on Monday. Teetay and Morgan will come to the hospital as well and then return home Monday evening so that Morgan will only miss one day of school. Allyson will have to stay overnight on Monday and we hope to be home early Tuesday afternoon. Thank you, in advance, for keeping her in your prayers as she faces surgery #6!

Hugs and Much Love to you all!
Kristin

Friday, September 29, 2006 11:56 PM CDT

Ah, another busy week... where do the days go?!?!?

Last weekend was lots of fun... probably too many activities, as usual, but we certainly enjoyed ourselves! Morgan had fun playing with Isabella and meeting new friends at the block party on Saturday and she had a blast with her 'best buds' from the squadron (Emma, Ashley, Trinity, and Caroline) on Sunday while the moms had our monthly spouse's meeting. Morgan's first gymnastics class was great and she jumped right into things (pun intended!) even though she hasn't taken a class in almost a year. She told me that "of all the sports she does", gymnastics is her favorite!

On Tuesday, Morgan and I had a date with Trinity and her mom. We went to dinner and then saw Disney Live! Mickey's Magic Show. It was a lot of fun for the four of us to have a special night together. The two girls were so funny talking about their days at school. (Trinity is in 1st grade at a different school than Morgan). Both Monique (her mom) and I learned NEW things about our daughters' days than hadn't been divulged to us earlier. I could fast-forwarded in my brain ten years and see the two of them talking about their days in high school. They were so animated and very cute with their discussion. The Disney show was terrific, as they always are. Allyson stayed with the nurse and was a "good baby" for her while we were away.

Allyson had an appointment with her ENT, Dr. Geller, on Thursday. This was our first appointment since finding out about the retracted ear drum. The doctor said that her left ear has a lot of dried blood in the canal and can't even see what's going on in there. The blood is a result of the attempted ear tube placement and was evident after that surgery in August. He wants to get 'in there' and see what he can do to put in a tube and/or correct the retraction. He explained that the ear drum will retract from time-to-time and children with clefts are especially prone to this happening. He said that nothing needed to be done urgently and that Allyson would most likely have recurring issues with her ears as a result of the cleft. Dr. Geller isn't available on Oct. 9th when Allyson is having her right foot surgery, so we'll have to take care of the ears another time. I guess I feel better after seeing him... if he's not worried, then I shouldn't be either, right??

Tomorrow (yes, on Saturday at 7:00 A.M.!) we have an appointment with Dr. See, her GI Specialist. This is Allyson's first appointment with her since she had the endoscopy done on August 1st. Hopefully, Allyson has gained weight with her consistency in eating orally and we'll get the 'okay' to reduce her tube feedings. Keep your fingers crossed! Dr. See may also give me more information about the surgery Allyson might be facing down the road. It's uncertain whether we'll proceed with the fundoplication and pyloroplasty, so I need more info to help make that decision.

After the early appointment (just west of L.A. by the way), we should be able to make it back to Ventura for Morgan's gymnastics at 9 A.M. and then we're meeting friends at a local farm to select our first (of which there will be many, I'm sure) pumpkins of the season. (That's why there are jack-o-lanterns on the page today - I'm really NOT crazy!)

We have no plans for Sunday. I'm hoping to catch up with my friends from afar - Aimee, Dani, Beth??? I had a great conversation with DeAnn, my friend in Kansas whom I met at the NFED conference, last night and I kept her up much later than I should have! Her son, Tyler (age 5 with EEC), just started taking piano lessons and his teacher re-numbered all the fingerings for him. DeAnn said that Tyler loves piano! It's so encouraging that he's able to "do it" and that they've found someone who will work with him and accommodate to his needs. When I see Allyson banging away on our piano, I can only hope that she'll be in the same position in a few years.

Hope you all have a great weekend! Welcome home, Teetay and Geep! We're glad you're BBAAAAAACCCCKKKKK!!!!!

Love,
Kristin

Friday, September 22, 2006 9:21 AM CDT

Good morning, everyone! Hope you've had a good week!

Allyson continues to cruise around "like nobody's business" on her NEW foot. We have our wekkly session with her Physical Therapist this morning, so we'll get her opinion on how she's doing. The only "difference" I can notice in her walking is that her left foot turns outward now (imagine the 10 o'clock position) while her right foot is pointing straight ahead. It may just be her way of adjusting to the smaller base of support, but I'm not sure. I doubt that it's anything major, just something I've noticed this week.

Morgan has had another great week of Kindergarten. She also resumed ballet classes this week (in addition to her karate) and she has gymnastics starting tomorrow morning. Morgan enjoys ALL her activities, and I noticed the positive effects that her karate lessons have had on her attention span and discipline level. She was extremely attentive during her ballet class and focused on Teacher Pam. As you may recall, we had 'issues' in the past with her being too talkative during class... I was really proud of her!

Allyson has accomplished TWO big feats this week... She's been able to drink out of a straw a couple of different times. This is HUGE for our little girl who hasn't been able to SUCK until now! She loves using the straw and capturing liquids in her mouth. Her first attempt was with milk (from Morgan's cup) and the second was with water. Hip, hip, hooray! The second accomplishment is with her eating. While we're still working on progressing towards larger quantities of pureed food, Allyson has mastered 'square cheese.' That's right, she's able to tear off pieces of American cheese and can manage to eat and entire slice! (I think all the 'playing' we've done with fake food has helped her move forward with real food.) Hooray again!

After our second trip to CHLA this week, we were able to schedule her right foot surgery. It will be Monday, October 9th. Most likely, Dr. Kay will remove the center bone in her foot (in order to give her a matched pair with just four bones in each) so this surgery will be a little more intensive than the last. We have an ENT appointment next week, and I'm hoping that he'll be able to join in with Dr. Kay to take care of her left ear issues at the same time. We'll keep you posted, but pencil in surgery #6 for 10/9/06. Thanks!

We have a busy weekend ahead... Gymnastics tomorrow and our neighborhood block party. On Sunday we'll see our friends at Point Mugu for our monthly squadron spouses' meeting. Hope you all have a great weekend!

Kristin

Monday, September 18, 2006 9:56 PM CDT

Allyson's cast is off and she's going great! Pictures are posted on the next page...

After just 2-3 "wobbly" steps, Allyson has been cruising around just fine sans cast. Her foot has healed nicely - and it's much smaller/narrower than before her surgery and the difference in the width of her feet is very noticable now. The skin between her toes is tight and her scarring is minimal. We weren't able to speak with the scheduler today about doing surgery on her right foot... hopefully, I'll be able to talk with her on Tuesday. (Yes, for inquiring minds... I'll be making yet another trip to CHLA tomorrow for an appointment with her HAND orthopedist!)

Ally's skin wasn't even that dry after the cast came off and her foot wasn't as 'stinky' as I had feared. She and Morgan really enjoyed their bath together tonight and had fun splashing each other (AND Daddy and me!).

More updates later in the week... Have a good one!

Kristin

Monday, September 18, 2006 8:37 AM CDT

Need I say more?!?!?!?

Of course, three of us in Cali are happy about the outcome of the game last night, but we're SOOOOOO HAPPY that "Baby Lester" is doing some wiggling in Aunt Ashli's belly! How cool!

Mark agrees that Lester was moving around because he/she was getting geared up for the Cowboys-Redskins game... however, he is insisting that Lester is a Redskins fan since he/she is a NATIVE WASHINGTONIAN!!!! Good point, Mark, but I don't think so...

We're off to CHLA for cast removal - hooray! I'll post pictures of Ally's new left foot later tonight.

Have a great Monday!

Kristin

Sunday, September 17, 2006 7:09 PM CDT

Go Cowboys!!!!!!

Five minutes 'til kickoff and it's all about Big D!

Allyson was napping when we took this picture, so we'll have to get one of her at halftime. Don't worry, though... she's decked out in Cowboys attire too!

Let's hope it's a great game and that Santana Moss breaks his leg in the first quarter.


More later, I'm sure...

Cowboy Kristin

P.S. So sorry the Eagles lost earlier today - NOT! :-)

Thursday, September 14, 2006 8:11 PM CDT

Is it just me or were you all getting sick looking at that last batch of pictures?!?!? Sunday will be here before we know it, so I needed to AT LEAST get the script and border in the RIGHT colors!

We've had a good week so far. Allyson and I went to our second playgroup on Wednesday and had a great time with the other mommies and kids. Allyson played so well with two other boys (ages 13 months and 16 months). They're all about the same size and 'have the same interests', so it made things easy. I enjoyed visiting with some other moms and meeting some new people. Even though this group is all Navy wives and kids, most of the members are in different squadrons, so it's good to branch out and make new friends.

Allyson is also getting to know a new interventionist this week. One of Pablo's staff members, Nancy, will be coordinating her therapy and running her early intervention sessions from now on. Pablo will still be in the picture (as he is the owner and director of the company providing services), however, he felt that Allyson would benefit from working with Nancy. He's extrememly busy with his company and managing the staff of the group home for special needs kids which he also runs -- this will be better for all of us. Nancy has a background in Speech Pathology and is also trained as a preschool teacher. She's loving and kind and wonderful to work with. Allyson "took" to her right away and I think the transition will be seamless.

Morgan's second week of kindergarten has been great! No "disasters" to speak of this week. Next week, is Back-to-School night and Morgan is very curious about what her teacher will be telling the moms and dads on that night. Of course, Mark will be back on the boat next week, so I'll need to find a sitter for M and A while I visit her school.

Teetay and Geep continue to update us with news of their travels. I can't wait to hear more about Ayers Rock - everything about their experience sounds spectacular! Morgan and Allyson got a postcard in the mail today with animal pictures on them. Morgan was so excited!

Have a great weekend!

Kristin

Tuesday, September 12, 2006 9:05 AM CDT

I know, I know... I must have been having a weak moment... Even though the Redskins lost (hooray!) last night, these fans did their best to cheer them onto victory. You'll never see this picture again once my father is back in this country! Sorry, Geep (and all the other 'Boys fans out there!)

Good morning! Hope everyone has had a good week... Things have been busy for us! Why does the start of school make everything seem busier???!!!

Anyway, I copied and pasted an e-mail from Teetay into the guestbook. Also, a picture of Teetay and Geep that they e-mailed to us. We've spoken a couple of times and have got several e-mails from them! Sounds like they're having a fabulous time in Australia and are seeing/doing so much! Meeting great local folks as well as other Americans who have ventured 'down under' like they have. I can't wait to see ALL their pictures and here more about their journey... two weeks to go!

Morgan's first week of school was great! She had homework over the week and was so excited about it that she completed it Friday afternoon as soon as we got home. She loves her teacher, Mrs. Niles, and had enjoyed playing with all the friends in her class. Every afternoon, I'm greeted with the "disaster of the day" (at least in Morgan's opinion)... one day, her yogurt drink spilled in her lunchbox. Another day, she got a blister on her heel from her new shoes. On the third day, she fell off the monkey bars (she was FINE!). The following day, her cranberry juice spilled on her white shirt... etc., etc. When I probe about the REST of her day, she answers me with the "disaster" issue. Funny stuff! Yesterday morning, she told me that she was SO EXCITED to be going back to Kindergarten after the weekend.

Allyson continues to get around on her cast. It's thoroughly disgusting now... damp, smelly, shredded, dirty... I can't wait until the 18th when she gets it off! In addition to her climbing and walking, Allyson's latest passion is swinging on the swingset and going down the slide. She'll point to the back door and say "uh-uh" and even attempt to open the sliding glass door. Once we're on the patio, she'll beeline over to the swingset and raise her arms to be lifted up. She loves to go high in the swing (of course!) and gets even more excited when Morgan pushes her! It's fun for them to play together outside while I'm watering the plants and enjoying our end-of-summer weather.

Karate classes continue for Morgan and she's still loving it! There are now three girls in her class and they enjoy sparring with each other. Although, sometimes Morgan is paired with one of the boys (the other two girls are older and bigger than she is) and she doesn't mind partnering with the boys one bit! Next week, we add ballet and gymnastics to our list of activities, so we'll be even busier!

We had another nice weekend. On Saturday, I hosted a baby shower for a friend of mine. We sat out on the patio and everyone seemed to have a good time. Mark took the girls to the mall (Morgan's request) and then to the park for a few hours. Morgan also had another playdate with Isabella and Mark got some boogie-boarding in on Sunday. Of course, we watched a couple of football games and got caught up in the frenzy of kickoff weekend. Oh, bring on the rivalries!

I'll try to post more regularly. Sorry for the lapse in updates! Hope you're all doing well! Thank you for your continued support!

Kristin

Monday, September 4, 2006 10:28 PM CDT

Greetings on this Labor Day Monday and "back to school eve"! Hope you all had a great weekend!

We had a nice time together here. We spent Saturday planting new flowers and shrubs in the backyard and in pots on the front steps. Ended up our evening by roasting marshmellows on our patio. Morgan exclaimed, "this is the best night ever!" On Sunday, the girls and I turned our usual hour-trip to the local Farmer's Market into a four-hour adventure. Not only did we shop for fruits and vegetables, we had lunch (and treats), Allyson took her nap and finished her a.m. tube feeding, we played in the grassy park area near the marina, and caught a fairytale show called "The Fisherman and the Little Mermaid" performed by a theater group called "Gypsies in a Trunk." We ran into our friends Karly and Colten (and Mom, Toni) as well and had a really fun time! Mark called to check in on us a couple of times and couldn't believe we were gone so long. He took advantage of the beautiful weather and went for a long run and hit the waves on his boogie board in the late afternoon. Morgan also had a chance to play with her friend, Isabella, at her house across the street. Today, we ran some errands, did some work around the house, and Morgan played with Isabella for alittle while this evening. It was an all-around nice and relaxing weekend for us!

Bon Voyage to Teetay and Geep who will set out on their Outback Adventure tomorrow afternoon. We can't wait to talk to you and hear all about your trip! Be safe and HAVE THE TIME of YOUR LIVES on your DREAM VACATION! We love you lots!

Happy 1st Day of school tomorrow to all those who are returning to class on the "traditional" back-to-school day. We wish Tyler Donahue in Minnesota and Geo Dotsicas in Pennsylvania extra-super first days of school as they join Morgan in going to Kindergarten tomorrow! Can't wait to compare notes and see how everyone's first day is!

Finally, I'd like to wish TG well as he "deals with" the passing of his kidney stones. I've heard that it's the male equivalent of childbirth! I guess TG thought he was going to have one up on Ashli... at least until February when she gets to experienced childbirth herself. Yep, that's right, folks... Morgan and Allyson are going to have a new cousin born a little less than six months from now! How about that??? All is well with Ashli and "Lester" (the baby's inutero nickname). She's 16 weeks along now and has given me the 'okay' to spill the beans and let the world know that she's pregnant! So, there you go! We're all so excited and can't wait to have another person to love in our family!

So, that's enough news for this Monday night. I'll post new pictures in the morning after I take Morgan to school... I'm sure everyone is curious to see her in her uniform on the first day of Kindergarten! Have a great week!

Love,
Kristin

Friday, September 1, 2006 2:17 PM CDT

Happy Labor Day weekend! Hope your weekend is off to a good start and hope all the east and west coasters are staying dry! Sounds like "Ernesto" packed quite a punch when visting our families in NC, VA, and DC. We're hoping that "John" in the Pacific won't cause any trouble for us... although, Mark is hoping he'll bring some big waves so he can enjoy his new surfboard this weekend!

It's been a busy week of appointments for Allyson. On Monday, we saw Dr. Kay who checked her left foot one week post-op. Everything looks good and she's walking around on her cast like a pro. The blister is almost completely healed and she's able to wear a shoe on that foot now. We'll see Dr. Kay again the week of the 18th and he'll remove her cast at that time. We'll also schedule her surgery for the right foot then. We're hoping that he'll have an opening in early October before Mark and I go to Hawaii or early November after we return. Hopefully, we can get it taken care of before the holidays.

On Wednesday, Ally and I both saw our family dentist for a check-up. Dr. Lindbergh did a regular exam and cleaning on my teeth and got a little peek at Ally's teeth. There are four teeth on top and none on the bottom. Her front two teeth have come in (although one is behind the other) and her first molars on the right and left are in the process of coming in. Allyson was very comfortable crawling and walking around the office. She played with the dental assistant while Dr. Lindbergh checked my teeth and later figured out that she could climb up into the chair onto my lap and then slide down the chair. She was having a ball! I, however, was trying to keep an eye (and hand on her) while having my teeth scraped, polished, and flossed. Not so fun for me!

Allyson had an orthodontist appointment on Thursday at CHLA. We saw Dr. Yen (who oversaw the work of Dr. T during the NAM process) about possibly getting a palatal device that would help Allyson with eating and eliminate the nasal reflux that occurs while she's eating. Before we actually met with Dr. Yen, I witnessed firsthand Allyson's superstar qualities. She was greeted by all the dental assistants who remembered her from the "NAM days" last year. There were two babies there getting their NAMs adjusted and their parents were brought over to see Allyson and how great she looks after wearing the NAM. The "new" doctor who's now doing the NAMs (since Dr. T returned to Thailand in June) took about 25 pictures of Allyson from every angle imaginable. Dr. Yen snapped a few pictures with his own camera to e-mail to Dr. T. It was like she was "NAM royalty" at CHLA! Van, the assistant in all the NAM cases, kept telling everyone "this is our first NAM baby! Doesn't she look terrific! She was the first one!" Now the clinic has seen 23 children through the NAM process. So, after all the hoopla, we finally sat down with Dr. Yen and talked about our options. It's possible that Allyson may be fitted for an obturator which is like a modified dental retainer with a speech bulb or palatal lift attached to the back used to treat velopharyngeal insufficiency (VPI). VPI is actually related to speech difficulties and it's not clear if Allyson is affected with it or not. It's also uncertain whether this will help with her oral feeding, but he's open to trying it. There are three issues, however, with getting this device (or a modification of it) which is normally used with older patients (children and some adults with speech difficulties). 1) We need a good impression of the roof of her mouth and she needs to be still to do this. 2) Because she's constantly growing, a new device would have to be made every 6 months or so. 3) She doesn't have any teeth to which he'd attach the appliance. So, the bottom line is that this will be very complicated to create and hold in her mouth. However, we agreed to take an impression when she's having her right foot surgery since she'll be under anesthesia anyway. Once he has the impression and can see what the palate structure looks like in the back of her mouth, then we'll go from there. Dr. Yen said that this case would be challenging, but that he wanted to take some time to think about how to proceed.

So, that's our week in a nutshell! We don't have any plans for the weekend other than doing things together as a family. The four of us haven't been home alone together much this summer. It's hard to believe that it's September 1st already! Where has the summer gone? Oh, now I remember... we were travelling, visiting family and friends, attending conferences, swimming and karate lessons, therapies and doctors appointments, endoscopies and surgeries... that's where the summer went! :-)

Have a great weekend! Be safe and Happy First Day of School to all those kids who started this week or start on Tuesday like us!

Kristin

Monday, August 28, 2006 0:21 AM CDT

Hello to all! Hope your weekend was spent doing whatever you like to do best... Aunt Ashli sent Ally this COOL shirt and I must say that it's message is right on the mark! :-)

Allyson continues to dazzle us with her stong character and spirit - nothing stops this kid... case in point, she was climbing all over Morgan and me this evening and she accidentally kicked me in the head with her cast. When I said "ow!", she looked back at me, laughed and kicked me again! She's quite devilish and KNOWS when she's doing something to make you laugh! After Thursday night, she's been off Motrin and doesn't seem to be bothered by her foot or cast AT ALL. She's more concerned about the scab that's forming on her right foot as the "blister from hell" continues to heal. She's taking a few steps on her own and crawls or walks with assistance to get wherever she wants to be. Her nights have been great... same old, same old, as far as her routine goes.

Mark and I had a wonderful time going out both Friday and Saturday nights. Having dinner and going to the comedy club with our friends, Josh and Kim, from D.C. was great. The Hawkeye Ball last night was one of the best ones we've been to in recent years. Too much fun in a 48-hour period... if you catch my drift! Grandma K. did a super job with girls and didn't seem any "worse for wear" afterwards. We're so glad that she's been here and Mark and I have been able to enjoy some time together. It was great seeing Jan Perdue, a longtime friend of Mark's family, who drove up from San Diego yesterday and spent the night with Grandma and the girls. Jan enjoyed playing CandyLand and Old Maid with Morgan and was amazed with Morgan's intellect and spunk! They also spent time jump roping and playing on her scooter. It was fun for everyone, I'm sure! Morgan lapped up all the extra attention she received!

We all went to the Farmer's Market today and had lunch, listened to music, and bought local fruits and vegetables. Mark and I took Morgan shopping for her school supplies this afternoon and got her backpack 'stocked' for Kindergarten. We still have another week before school starts, but we want to be ready, you know!

Grandma K. leaves tomorrow night and we'll miss having her helping hands around. Mark is back to work tomorrow and Morgan has her final week of Pre-K. Allyson and I will travel to CHLA for her one week post-op appt. with Dr. Kay. Like I mentioned, she's doing well, so I don't imagine there will be much to report after this appointment.

Our prayers are with the Siemon family as they face the difficult days ahead. Thank you for keeping our friends in your thoughts and prayers.

Love you all!
Kristin

Wednesday, August 23, 2006 5:23 PM CDT

this picture is of Allyson and I in the recovery room shortly after she came out of surgery. She was very 'jumpy' and 'jerky' - probably from the morphine and general after-effects of anesthesia. She let me hold her sporadically, but spent most of her time in her crib while in the recovery room.

Hello, everyone! We're home! Thank you for all of your well-wishes on the website and all the thoughts and prayers that abounded throughout the country yesterday. Thanks, Aunt Ashli, for posting a brief update and letting all of Ally's "fans" know that she was doing fine.

Her foot surgery went very smoothly and Dr. Kay told us 'his part' only took about a half-hour. After removing the skin, tissue, and mostly fat between the toes on the left foot, he opted NOT to sew the center bones of her foor together. He felt that the approximation of the toes were close enough and that there would be minimal spreading over time. That was the main reason for the "shorter" surgical time in addition to not operating on the right foot. Her blister is healing, but Dr. Kay felt there would be too much of a risk for infection if that foot was casted. So, we'll have to reschedule another procedure with him this fall. He jokingly said, "I'll know what I'm doing by the time I do the right foot." :-)

The ENT, Dr. Zim, was also part of her surgery yesterday. He was filling in for her regular ENT and was scheduled to replace her ear tubes. He successfully replaced the right one (the original tube placed last July was still intact, so the new one just "popped" right in). In her left ear, the tube was no longer in place. It's not uncommon for the tubes to fall out after 6-9 months - and it usually goes unnoticed by the patient or parents. The hole created by the tube closes up and a new one is placed again. However, in Allyson's case, not only did the hole close-up, but the "negative pressure" (the ENT's words) caused the ear drum to be "sucked back" (his words) against the back of her ear. He attempted to "puff up" (more ENT medical jargon :-)) the eardrum in order to insert a new tube, but there was no space to do that. So... what does this mean? I need to do some research and follow up with her regular ENT, but it's possible that Allyson may need "eardrum reconstruction" down the road. He said that this condition is not dangerous (although it IS serious) and needs to be followed carefully. He also indicated that it may cause some hearing loss in that ear. Of course, Mark and I asked "how", "why", "what" caused this and could it have been prevented. The short answer is 'no'. Now, if the tubes had been scheduled to be replaced sooner, then it may have prevented this, but nothing's certain. When she last saw her regular ENT on June 1st, both tubes were still in place, so the left one fell out sometime in the past two and half months. When I find out more about the 'eardrum' issue, I'll post it.

Allyson and I had a pretty good night. She was really doped up on morphine coming out of surgery (they gave her the max dosage) and she was groggy until late last night. As Teetay wrote, Allyson wanted to be held as she slept and was not thrilled to lay down in her crib. Once it got close to bed time, Mark transferred her into her crib and she slept soundly for 2-3 hour stretches. Of course, with another 20-month old in the room and nurses checking vital signs every few hours, there were several disruptions throughout the night. Allyson remained calm most of the time and never seemed to be in any pain. In fact, the first pain med she received (other than the initial morphine) wasn't until 6 a.m. this morning. At one point during the night, Allyson slept in the "chair bed" with me. It was nice to cozy up to her for a little while! Early this morning (around 2 a.m.), Allyson was wide awake and back to her happy self. She was giggling and lifting up her hospital gown trying to get me to tickle her tummy. I did it a few times and we were both laughing... she signed for "more" and I honored her request for coaxing her back to sleep. After Mark came back to the hospital this morning, Allyson seemed cheery and was very active in her crib. She actually pulled out her IV shortly after the orthopedic resident had made her rounds and indicated that Allyson would be discharged soon. We figured that Allyson was helping the process along by unhooking herself. Fortunately, we didn't have to have the IV put back in, so we got Ally dressed and waited to be discharged. The order came just before 10 a.m. and we were back home again by 11:30 this morning.

We've been relaxing this afternoon. Allyson, Mark, and I all had naps and Grandma and Morgan are playing together practicing "kindergarten" skills. We're having dinner delivered tonight by one of the wives from the squadron, so we're looking forward to Ashley's lasagna and being able to take it easy - even with naps, we're all feeling a little weary this afternoon. Morgan will be back in school tomorrow and Mark will be at work in the afternoon and evening. Grandma and I will help Allyson get around with her big cast. She seems content to crawl and will stand up while holding onto something. She's somewhat off balance and since the blistered foot still needs to be 'shoeless', she's going to be a little lopsided for a few days. I'm sure she'll adapt in her own way... we all know how resilient she is!

Thanks, again, for all of your support. We appreciate it greatly!

Love,
Kristin, Mark, Morgan, and Allyson

Tuesday, August 22, 2006 10:30 PM EDT

Hi Everyone! Allyson is in and out of surgery, now sporting a spiffy white cast that Morgan is anxious to decorate when they get home :) Ah, the love of sister-best friends! They operated on just the left foot as the right (with the severe blister) was too much of a risk for infection, so they will do that foot another time.

All went well and I am sure Kristin will post a more detailed update later this week. Kristin was going to *try* to get some rest with Ally tonight in her hospital room, while Mark, Grandma K and Morgan had a slumber party at the nearby hotel.

THANKS, as always, for ALL your, support, prayers and well wishes!!

Love,
Aunt Ashli

Monday, August 21, 2006 6:21 PM CDT

Hello from our WHOLE family! Yes, Mark is home early from Fallon (hooray!) and Grandma arrived last night (yippee!)... we're all set and ready to go to LA early in the morning.

Allyson has to check-in at 7:00 a.m. and her surgery is scheduled for 9:30 a.m. PST. We estimate that the surgery to repair the clefts in her feet will take 2-3 hours depending on whether Dr. Kay operates on both feet or just the left one. While her blister is healing and drying up, he'll make the decision as to whether he'll operate once he sees it tomorrow morning. She will also have her ear tubes replaced by the ENT on call. Her regular physcian is on vacation, so another doc will stand in for him and do the surgery. The ear tube replacement literally takes LESS than five minutes, but must be done under general anesthesia for children because of the "stillness" factor. Since her original tubes were placed last July, she's DUE for new ones... standard operating procedures where ENT matters are concerned.

Thanks for keeping Ally-Bear in your prayers tomorrow. We appreciate all your thoughts!!!!! We'll have Ashli update the journal tomorrow once we're able to touch base with someone in the family.

We anticipate Allyson coming home on Wednesday afternoon, we'll put some post-op pictures on the website once we're settled in again.

Love you all! Let's hear those prayers from surgery #5!!!

Kristin

Saturday, August 19, 2006 10:43 AM CDT

Happy Saturday morning to everyone! Hope your weekend is off to a great start!

Happy Birthday to Grandma K. and Aunt Mer and Meredith L. who all celebrated their birthdays yesterday! Morgan and I sang to Grandma over the phone last night. Sounds like the Kelso ladies in Southport had a very nice day. We're looking forward to seeing Grandma tomorrow night. Have safe travels!

Allyson blistered foot seems to be healing slowly. Dr. Huang bandaged it up on Monday so that she would not continue to break open the skin as it attempts to heal. I changed the bandage daily, but it hasn't gotten much better. There's been some bleeding as well... caused by the friction of the bandage on the wound. I've attempted to contact the Foot Orthopedist's staff to alert them of the situation prior to Tuesday's surgery, but everyone seems to be on vacation until Monday. I don't know if he'll proceed with surgery on her right foot with the burn still healing... Worst case scenario... he'll only operate on her left foot and we'll have to reschedule the right foot for another time. I'm hoping that won't be the case, but we'll have to wait and see!

Despite having her foot bandaged, Allyson hasn't slowed down one bit! She's her usual climbing, walking, stumbling self... I wish I could keep her more contained so that her blister could 'air out', but that's impossible! When I changed her bandage yesterday morning, I let the air get to it for a few minutes while Ally sat in her booster seat and I prepared the dressing. Of course, she reached down to touch her foot and caused a small area to bleed again... her skin is THAT fragile and thin! I'll attempt another change this afternoon and hope that healing is progressing.

After a not-quite-as busy week, we're looking forward to doing some fun things this weekend. It's the Annual Hueneme Beach Festival, so the girls and I will head to the fair-like celebration this afternoon. Yes, Allyson will be in long-sleeves, long pants, and TONS of sunscreen!!!

Swimming lessons have ended, but we hope to get to the pool a few more times before Labor Day weekend. Morgan has her karate class this morning. She earned another stripe on Thursday and practiced "bully fighting". Morgan "chose" to be the "good guy" and two other girls double-teamed her. She defended herself pretty well! When I told Mark about it over the phone, he was impressed!

Mark's "big event" in Fallon went very well yesterday. He was stressed about leading such a large exercise and having to brief the "top brass" in the Air Wing as well as the Battlegroup Admiral. When I spoke to him last night, he was headed to the O-Club for some adult beverages and unwinding time with his buds! I wonder what time he'll check-in with us this morning... :-)

Hope you all have a wonderful weekend! Ash and TG and Mom and Dad are cleaning/organizing at Ash/TG's house this weekend to prepare for a new tenant who's moving into their basement in a couple of weeks. Hope you all get a lot accomplished and that it's not too hot - have I mentioned that it's 68-degrees here this morning?!?! Talk to you soon!

Love,
Kristin

Wednesday, August 16, 2006 3:02 PM CDT

GREAT NEWS from the Cardiologist today!!!! Allyson, Morgan and I left the house at 6:15 a.m. to make her 8:00 a.m. appointment at CHLA. Allyson was a trooper through the various tests - chest x-ray, EKG, and Echocardiogram. The cardiologist delivered the GREAT NEWS after reviewing the Echo and Ally's ASD has closed up on its own. He said she was FINE and that no further treatment would be necessary! HOORAY!!! We're so happy! Morgan was great as well and role played with her baby doll after each test was done. Just before I sat down to type this, I thanked Morgan for being such a good girl at Ally's appointment today. She smiled and then asked, "what was that doctor talking about when he said something was 'closed'?" I explained to her about the hole in Allyson's heart and how it had closed up just like magic. She said "that's good. I'm happy for her. Now, can we play?"

So, I'll update more later. Morgan's tugging at my sleeve to get some one-on-one Mommy time before Allyson awakens from her nap.

Love you all!
Kristin

Sunday, August 13, 2006 2:35 PM CDT

WOW! We've been SO BUSY! We miss Mark! We miss Teetay! We're looking forward to Grandma's arrival next Sunday evening.

Yes, that's Allyson with an empty vodka bottle that she fished out of the trash. (That's her latest 'bad baby' behavior - digging in the trashcan and/or hiding things in there...)

We jumped right into swimming lessons and karate lessons and doctors appointments upon returning from our conference trips. Morgan made great strides in her swimming and now puts her face in the water and "swims" away from the steps and wall without assistance. She's still fearful of jumping off the diving board, but she's a master of jumping of the side! She's loving her karate class and the sparring that they practice. She grins from ear-to-ear when she suits up in her helmet and gloves. It's hysterical!

Allyson has had a bunch of appointments over the last couple of weeks. Her endoscopy on August 1st was not as positive as we had hoped. Her reflux has NOT improved despite being on medication for over a year. Although she's not spitting up very often, the inflammation in her esophagus indicates that she's refluxing silently and often. The sphincter that is supposed to keep contents from 'bubbling up' is very weak and poorly developed. It doesn't constrict tightly enough to seal off the opening into her stomach and therefore allows her stomach contents to flow freely up into her esophagus. The OTHER sphincter that pushes the stomach contents out into the intestines is also weak and that opening is smaller than normal. Her GI said that the formation of the two sphincters is the OPPOSITE of how they should be. The "front door" should be small and relatively tight and the "back door" should be larger and less tight. This news wasn't NEW to us, but we had hoped that after a year of meds and her own physical maturity, that the two sphincters would be working more "normally" now. Most likely, we will be looking at gastrointestinal surgery for Allyson sometime in the next six months or so. This latest information about her reflux and anatomical deficiencies MAY also be a reason that Allyson is not progressing with her oral feeding. Most likely, her stomach is ALWAYS full and when we add food orally on top of what is already in her stomach, it starts to bubble up and cause discomfort. She senses this and therefore, doesn't swallow her food and refuses to eat. Again, this is just ONE of the possible theories out there, but it makes sense... We're also looking into getting an orthodontic device to help seal off the gaps that are still in her gumline (or alveolar ridge) and cause food to go up into her nose. Another approach is to see a Communicative Disorders specialist who has expertise in feeding/speech with cleft palate patients. Unfortunately, until Allyson can TELL us what's the problem, we'll have to keep 'guessing' and trying anything/everything to FIX it!

Last week, Ally also had her pre-op appointment with the Orthopaedist who will perform the cleft "repair" of her feet on August 22nd. She will stay overnight to make sure that everything is fine post-op and that circulation is reaching her "new" feet. She'll wear casts on both legs - up to her knees for about four weeks. She should be able to walk with the casts on... remember how she crawled with her BIG club-like cast on her hand after that surgery? After the casts, she may have bandages on her feet, but should be able to wear socks and shoes like normal. The doctor doesn't anticipate that she'll need any future surgery on her feet. In addition to closing the clefts, he's also planning to sew the center bones of her feet together to prevent FUTURE spreading of her feet
as she gets older.

Allyson had a follow-up hearing test on Friday. You may remember that we attempted a hearing test in February, but she wasn't 'developmentally ready' to take the test with accuracy. So, this time she did the test 'correctly' and performed pretty well. The results indicated that Allyson MAY have a mild hearing loss, HOWEVER, she is due to have her ear tubes replaced soon (we thought this would be done in conjunction with her feet surgery, but recently found out that her ENT is on vacation all month...). Most likely, she has some blockage in her tubes and/or the tubes have fallen out which would explain the test results. The audiologists did not seem concerned and suggested we re-test after her tubes are replaced... whenever THAT is!

This coming week, we have an appointment with the cardiologist and Allyson should have an echocardiogram done to check the status of her ASD (atrial septal defect). Remember the hole in her heart that was detected when she spent two weeks in the hospital when she was 12 weeks old??? Well, this is her FIRST follow-up since the ASD was detected and a follow-up echo is necessary before she undergoes anesthesia for the 7TH TIME (but who's counting, right?) on August 22nd. The anesthesiologists get really nervous when treating a child with a heart defect. Her echo from March 2005 is too old to be valid anymore, so we need to get cleared on Wednesday, the 16th, before her surgery (her 5TH - more counting, I know...)the following week.

In between all the appointments, we started Speech Therapy last week with the Speech/Language Pathologist that is employed by Pablo's organization. Allyson's first session was mostly a "get to know you" session, so this week we should begin REAL therapy... I hope. While Allyson makes a lot of sounds, there are very few consonants or "real" words. "Mama" is still her clearest word and the one she repeats all the time (not that I'm complaining!), but we're definitely eager for that vocabulary to grow!

My final paragraph will be about MYSELF (wow! you're shocked, I'm sure!) and how I am the recipient of the "bad mommy" award. On Saturday, we spent the day at the beach (5+ hours) with some of my girlfriends who have daughters around Morgan's age. It was a lot of fun for all of us (except maybe Allyson who got really tired and threw herself down into the sand - face first repeatedly)! Allyson finally fell asleep in her stroller mid-afternoon (she'd have nothing to do with the SPF 50 cabana tent I assembled for her...). Although she'd been lathered with sunscreen and the stroller was covered with a towel while she slept, her right foot got exposed and she got a MAJOR sunburn all over the top of her foot. I knew it was burned last night and coated it with ointment/vaseline/lotion/etc. Sometime during the night, the BLISTERED foot rubbed against her sheets and Allyson awoke this morning with a raw, oozey, GIANT (about the size of two quarters side-by-side) popped blister over half the top of her foot. I felt TERRIBLE!!!! She cried several times today when she would 'bump' her foot on something while walking. I guess the 'bright side' is that she IS walking and doesn't have to drag that foot across the carpet while crawling. It looks horrible and I noticed ANOTHER blister (I assumed everything had popped) about the size of a dime adjacent to the popped one before she went to bed tonight. So, our fun-day-in-the-sun had some not-so-fun side effects and a bummed-out Mommy to go along with it! It's funny how stitches and surgery don't bum me out, but a popped blister (that I could have prevented!!!) gets me all upset!

So, I'll wrap up on that note. Congratulations to Dani on becoming an AUNT on Friday. That's so great - can't wait to see pictures of Bree's little one! Happy Birthday WEEK to Grandma K. and Aunt Merideth who celebrate their special days this Friday, August 18th! Hope you have a wonderful visit together in NC later this week!

Thanks for your continued support for Allyson and ALL of us. We love you so much and are pleased to have you on our journey!

Kristin

Wednesday, August 2, 2006 3:05 PM CDT

Hi! We’re back from a wonderful week of conferencing, learning, meeting, networking, bonding, loving, hugging, crying, flying, greeting, etc. I don’t think I have all the WORDS in me to express what a great experience we had, but I’ll try…

Thank you, Ashli, for updating everyone mid-week and letting them know about our travel woes departing LAX and our week thus far. Las Vegas was HOT, for sure, but we didn’t notice it too much being inside the conference center most of the days. It was wonderful to meet so many of my cyber-friends with whom I frequently communicate on the cleftAdvocate listserv. I learned a lot about what the future might hold for Allyson and her craniofacial issues. Although she’s had her initial lip and palate repairs, there are other procedures down the road. The info we received will help us make decisions about the course of treatment and gave us hope about new technologies that may be of benefit to Allyson.

I didn’t get to the Strip, but Morgan and Teetay spent an afternoon at Excalibur playing arcade games and seeing the ‘sites’. Morgan actually won two stuffed animals all by herself… and Teetay won her a third one! Just what we needed!!! The majority of our “down time” in Vegas was spent at the hotel… in the pool… hanging out with our new friends. We enjoyed some wonderful speakers during the week who were affected with facial differences OTHER than cleft lip/palate. In particular, David Roche, a humorist and speaker, who entertained us with stories about his life… Amber Hammond, a 20-something woman who has MORE self-confidence than almost anyone I’ve ever met and works in customer-relations/sales environment AND has a facial difference… and Barbara Kammener Quayle, a former jr. high teacher, who was severely injured and burned in a car accident 30 years ago. She talked about the STEPS to self-confidence as a person with a facial/body difference and living/excelling in the world of “normies.” (That’s how she referred to the rest of us…) It really was enlightening and heart-warming to be among others who have been through MUCH more than Allyson and our family have endured. Morgan and Allyson both enjoyed meeting and playing with new friends and we’re looking forward to next year’s event.

Onto St. Louis… no travel woes to report here other than LONG lines at the Vegas airport at 4:30 A.M. (We had a 6 AM flight!!!!!) I guess NO ONE ever sleeps in Vegas… Anyway, we arrived in St. Louis before lunch and were thrilled with the Union Station Hyatt and shopping area. There was TONS to keep us busy before our rooms were ready. Ashli met us at the hotel in the afternoon and we all rested up before the Gala last Wed. night. The girls enjoyed the daycare and made their first real connections with other ED-affected kids. Us grown-up girls enjoyed the gala, silent auction, dinner, and mingling with other NFED families. I met Jack Kriz that night – a 54-year old man from Oregon affected with EEC and Norma McDonald from Nova Scotia who is a “mature” woman affected with EEC. They were both anxious to meet Ally the next morning, so we made plans to get together. Tonight we also met the Huxman family from Kansas while picking up the girls from the evening daycare. DeAnn and Chris are the parents of Ryan (7) and Tyler (5 w/ EEC). Allyson befriended them in the daycare room and DeAnn picked her up and played with her. Within a couple of minutes, Ashli said “hey, Ally!” and at that moment, DeAnn exclaimed “You’re RALLY FOR ALLY!” We all had a good laugh and truly “bonded for life” in that moment. We spent the rest of the week together. Morgan played beautifully with Ryan and Tyler… Chris took Allyson just about everywhere and people thought HE was Allyson’s father instead of Ryan and Tyler’s. DeAnn and I never had enough time to finish all the conversations we started… and got called out for whispering during one of the sessions. We ate our meals together, went to the pool together, etc. for three days straight! The Huxmans are a wonderfully family and I know that we’ll be a part of each other’s lives FOREVER. At the family outing at the waterpark on Thursday night, we met the Hodges family from Tennessee. Rachel (affected w/ EEC) and Michael are the parents of Jakob (7 w/ EEC), Olyvia (5 w/ EEC), and Nikolaus (4). They were wonderful people as well and Rachel was able to offer a lot of insight about being a GIRL with EEC… not only from her own experience, but through Olyvia’s as well. AS you can see in the pictures, Allyson and Olyvia resemble one another. Rachel has promised me baby pics of Olyvia so I can see that the similarities go back many years. Rachel was extremely open and candid in discussing all she’d been through in her life and the lives of her two affected children. It was GREAT! And as Teetay said, it really was kind of like a religious experience that’s difficult to put into words.

There were lots of workshops and presentations by doctors and experts in the field. It’s kind of technical stuff that I won’t include all at once and much of it doesn’t pertain to Allyson… or we don’t KNOW if it will pertain to her in the future. Since I really want to get this journal FINALLY posted, I’ll wrap this up for now. I hope that Mark will be able to attend these conferences in the future. Most likely, he’ll miss the ones next year because he’ll be deployed. The NACFC is always in Vegas and the NFED is near Los Angeles next year, so I’ve already been tapped to help out with planning activities and securing speakers! My mind is still spinning with ideas, conversations, connections, etc. that transpired over the past week. I’ll keep posting pictures from the conferences so you can sort of experience what we did.

Thanks for your continued support! We love you all lots!

Kristin

Tuesday, July 25th, 2006 - 3:00 PM EST

Greetings from Washington, DC!

First and most importantly, HAPPY BRITHDAY, MARK!!!! I hope you're having a great day, Bro, and do something fun tonight -- I know the house is quiet so even if it's sitting outside and having a beer (or 5) and enjoying the weather, do it! Your girls will be home soon with birthday hugs and kisses for ya!

Just a quick update for all those wondering how Kristin, Morgan, Ally and Teetay are doing on their first conference jaunt this week...

After a couple of travel debacles and the trials & tribulations (NOT) of LAX and United Airlines, Kristin & Ally reunited with Teetay & Morgan in Las Vegas. YES, they were all supposed to be on the same flight but, well, long story short, after Kristin dropped off Teetay and Morgan to check in, check the bags and then went to park the car to meet them back at the gate, all heck seemed to break loose at LAX and the lines became insanely long. Teetay could only "make" United hold the plane for so long until they had to go off without Kristin and Ally. So there she went... Teets on her first solo adventure with Morgan (both are pros at flying of course!), 3 huge checked bags and Ally's CAR SEAT!! Thankfully Kristin had the stroller, her carry on, Ally's feeding stuff... and Ally :)... so those two stood standby for nearly three hours for the next flight. We're still not sure how Teetay toted and loaded the car seat and 3 suitcases and Morgan and herself and her carry-on through the Vegas airport and to the cab line so that’s for her to tell. After all, she’s Teetay and got it DONE! Kristin was thankful that the “rules” were not as she thought and Ally did not have to be in a car seat on the plane after all… who knew?!? Once they arrived in Vegas at the Alexis Park Hotel (which they say is lovely), Teetay spent the better part of the day “dealing” with management and the fact that their room had NO AIR. Have you seen the temps in Vegas lately?!? AIR would be important… Anyway, in true form, Teetay “won” after a long battle, got the room comped and everyone was cool.

Now for the really good stuff…. The CONFERENCE! As we pretty much knew but they prove it time and time again, Morgan and Ally adapt to anything, anywhere, and Morgan has best friends within minutes of meeting them. She has “lived” at the pool, playing with new friends, and hanging out with the big kids' camp for part of the day. She attended a session and napped peacefully in her Mom’s lap. Ally eats, plays, smiles and does whatever is expected of her and has been a trooper! Kristin and Teetay have attended sessions, and Kristin has united with many of her Cleft Advocate “online friends” and chat group folks for the first time face-to-face and is having a blast! She got together with a group of the moms a couple of nights for beers by the pool while Teetay hung back with the girls in the room. Go, K, go! What a fabulous bonding experience for everyone -- I can’t wait to hear more of the details and all she has learned this week.

We’ll see if we can post another update from St. Louis but just in case this is “it” until early next week, here’s the low down on what we’ll be up to….

Kristin and crew arrive in St. Louis from Vegas tomorrow AM, and I will arrive in the afternoon. Tomorrow night is the big gala event celebrating the foundation’s 25 year anniversary. It will be wonderful to meet the NFED folks who I have spoken with and emailed numerous times, and of course we’ll see Mary Kaye Richter again. Us 5 gals will be all gussied up and will certainly post some pics! Morgan is excited to wear her party dress and show off her new “do” ;) While Kristin and Teetay attend the NFED conference sessions (they are dividing and conquering the various sessions), I’ll spend my time Th, Fri and Sat volunteering at the 0-2 Kids Camp (with my Al-Pal!) and taking care of her and her new little friends. Morgan is off to the “big” kids’ camp and a couple of very cool field trips are planned. As many of you know I’ll have my minor speaking engagement about fund-raising for the NFED and Rally success on Friday afternoon. Speaking of, did you know that the totally for Rally 2006 now sits at nearly $9500?? Goooo all of US! We’re still counting too as donations continue to dribble in! Ok, I digressed… On Thursday night, we’ll all hit the water park and then the kids’ talent show on Friday night, and Saturday… hmmm… that’s a FREE night! I think we plan to do something very “St. Louis” like go up in the ‘ol Arch!

That’s all for now…. Surely there will be many more details to come when Kristin is back on-line this Monday. Thank you – as always – for your support and friendship as we all venture on this journey of life together!

Love,
Aunt Ashli

Saturday, July 22, 2006

We're OFF to Las Vegas tomorrow morning for three days of learning with other Craniofacial Families from around the country. Wednesday, we head to St. Louis for the NFED's three day national conference. I think we're ALL set and ready to leave the house at 6:30 a.m.!

Thanks to Teetay for updating you all on everything we've been up to over the past few days... besides the BIG haircut...

There's karate class, playdates, the circus, TWO date nights for Mark and I - one to celebrate a squadron friend's birtday at the Officer's Club and last night to celebrate Mark's birthday (which is on Tuesday, the 25th). We had a fabulous dinner at a quaint and cozy restaurant in Ventura and then hung out at our favorite wine bar - okay, we've only been there twice, but we always have SO MUCH fun at Weaver Wines! Teetay has been eating up her grand girls and they love being around her! I'm excited to have an adult companion on or trips this week. Teetay will get to experience flying with Morgan and Allyson on four different flights! We'll have a ball, I'm sure!

Enjoy the rest of your weekend and have a good week. I may have Ashli update you all on part one of our conference week and then, I'll use her laptop to post an update once we're all in St. Louis at the end of the week!

Happy EARLY Birthday to Mark who'll be home alone 'celebrating' on Tuesday! We'll miss you tons!

Love,
Kristin



GUESS WHAT MORGAN DID TODAY FOR HER SISTER?!?!?!


Yes, she cut her hair "to save" for Allyson in case she needs a wig down the road. Morgan loves her new "big girl" haircut and is as sassy as ever with her shorter locks.

Morgan was inspired by her 6 1/2-year old cousin, Whitney, who had 10-inches of her beautiful auburn hair cut for Ally a couple months ago. I was presented with Whitney's hair on the day of The Rally for Ally and was so touched by her generous gift. Morgan was pretty impressed too and wanted to give Ally hair so that her baby sister could have long "twisty hair" (aka braids) one day.

I want to get these pictures posted asap. I'll update more of the journal later and tell you what we've been up to this week and since Teetay's arrival yesterday!

Enjoy the before and after shots! The homepage photo is a picture of Morgan "sticking" her hair onto Allyson's head to see how she'll look!

Kristin

Monday, July 17, 2006 8:50 AM CDT

Greetings from California! We've been home for nearly a week and the unpacking continues... Actually, we're in between stages of unpacking and repacking as the girls and I are "off" again next Sunday. We'll first head to Las Vegas for the North American Craniofacial Families Conference (NACFC) and then to St. Louis on the 26th for the NFED's National Family Conference. Teetay will be joining us for a week of learning and connecting with other families and we're all so excited!

Our routine has returned to 'normal' this past week... other than Morgan being out of school. Although Morgan's preschool runs year-round, I'm giving her a little break until we return from our next travels. Then, she have a month of 'refresher' Pre-K before started Kindergarten after Labor Day in September. Allyson has seen Pablo and JanDee this week and both were SO pleased with her progress! Ally is now taking 9-10 steps at one time. She'll pause briefly while walking and touch her hands to the floor, regain her balance, and then continue walking to wherever she wants to go. Mark was thrilled to see her in 'upright motion'! When we got home last week, both girls were ALL over him and wanted Daddy's undivided attention. It was so cute seeing them climb up into his lap and play. I kind of felt like 'chopped liver', but took the opportunity to get some things done around the house. We've all enjoyed being back together and have spent most evenings playing games and watching movies together.

Morgan started her Martial Arts classes this week and is loving them! "Sensei Jackie" is a wonderful teacher and Morgan is really enjoying both the physical and mental aspects of the class. She'll attend classes three times a week and will have periodic tests to advance her belts. It's a whole new world for me and fun learning new things with Morgan!

Allyson had appointment with Dr. Reinisch on Saturday. We scheduled this appt with him to re-evaluate her feeding issues and determine whether there were any unexplained openings in her palate. Her oral intake of food has not improved much since her palate repair almost 6 months ago, so we went to Dr. Reinisch in search of answers... Also, her OT had recommended that Allyson might need an orthodontic device to assist her with eating and prevent so much food from going up into her nasal cavity. The presence of food in her nose was clearly noted on the last swallow study that was done at the end of May. Anyway, Dr. Reinisch, believes that things will get better "over time" without a device, but agreed to make the referral to the Orthodontist for a possible obturator device. So, we'll see Dr. Yen again (you may remember his name from the NAM days! Unfortunately, Dr. T is no longer at CHLA) and see what advice he can offer. Tomorrow, we'll travel to CHLA again for a follow-up appt. with Dr. Wright, her hand orthopedist. Yes, we're back in our routine full-swing!

Hope you're keeping cool wherever you are! Our heat hasn't been unbearable (yet!), but in a house without air conditioning, it only takes a little heat to make us swelter! Have a great week and thank you for keeping us in your thoughts!

Kristin

Monday, July 10, 2006 5:37 PM CDT

Hello! We're back from Nags Head and had WONDERFUL time. I wish I could hightlight all the fun memories of our beach week, but my time left in Virginia is brief and I have several suitcases/boxes/duffle bags/boxes/etc. to organize AND pack! UGH! I'm not looking forward to THIS part of our trip!!!! I'll try to sum up things for you all so that you can have a glimpse into our lives over the past week. We LOVED seeing Holly, Todd, and the Crandell clan several times during the week. The kids (Holly's, mine, the Philly gang) got along swimmingly both IN and OUT of the pool. It was non-stop laughter and commotion (as you can imagine with 10 children together ages 1-9), and tons of fun to be around. Seeing "Aunt" Charlotte (Holly's mom) was a treat as well as seeing her brother, David, whom I hadn't seen since I was 8 years old. He couldn't believe that I was "little Kristin" from 25 years ago... We had a GIANT July 4th bash with the Crandells and McKays, the Matus-Kelso-George-Bove-Dotsicas group, and Ashli's buds, the Lackis, Shields, Saemanns, and the rest of their house -- about 40 people in all!!! It was so much fun and our July 4th night ended with the "core" group watching 4-5 DIFFERENT fireworks displays around the Outer Banks while Ash plugged in her iPod and blasted patriotic music. I couldn't have imagined a better way to celebrate America's 230th birthday!

Our house in Nags Head was perfect for all of us, Ash and TG (and Nala!), as well as TG's sisters and their families. We enjoyed hanging out by the pool and at the beach and going shopping and seeing the "Cars" movie on our one rainy day. Morgan and her "cousins" had so much fun together and were engaged in one activity after another from sun-up to sun-down. Baby Gina (who turned 1 on June 13th) and Allyson discovered that they had things in common and started interacting with one another by mid-week. Allyson only poked Gina in the eye once, stole her sippy cup twice, and swiped the peas off Gina's tray just a few times. Seriously though, Gina held her own against "Ally the Brute" and they continued taking their first steps together during the week! Allyson is still taking just 6-7 steps at one time. Mark can't wait to see her in motion -- what a treat for us all! It was so great seeing Gina and Ally play together while the "big kids" were off doing their thing.

Today, my east coast visit was capped off by spending the day with my good friend, Dani, and her children who now live in New Hampshire. They're a couple weeks into their east coast road trip and we were so happy to see each other today. Dani visits Allyson's site frequently and is my dear friend who lovingly put together the albums of all the guestbook and journal entries from Allyson's first year. Although we hadn't seen each other in almost four years, it was great to reconnect in person today and see our kids having so much fun together.

We head home to California in the morning. Our four-week journey has been terrific and I'd do it again in a heartbeat! We're anxious to see Mark again who returned from his 'big boat' last week. He's complaining that the house is too empty and too quiet... don't worry, the three of us girls will change that by tomorrow night!

Hope you all had a great 4th of July! It's been a month filled with reuniting with friends and family and making so many fantastic memories that none of us will soon forget. Thank you for continuing to be a part of this journey! We love you all!

Kristin

Friday, June 30, 2006 2:34 PM CDT

Greetings from Southport, North Carolina! We've had a great week here at Grandma and Grandpa Kelso's house. We left the rain behind us in the northeast and have enjoyed sunny skies here most of the week. Tomorrow we head north again to Nags Head, NC to spend a week at the beach on the Outer Banks.

Let me catch you up on our week here and all that's been happening...

On Tuesday, the four of us girls went into Wilmington and spent a few hours at the Children's Museum. Both Morgan and Allyson had a blast! There was so much for both of them to do. The museum was a little crowded since it was pouring rain most of the day... Morgan took the opportunity to make new friends and let her imagination run wild! Allyson tried to climb on just about every exhibit possible and we're looking forward to seeing the rest of the museum on our next trip here. Later that afternoon, many of Grandma and Grandpa's friends came over for cookies and lemonade. Morgan and Ally were little angels and enjoyed being "shown off" by their grandparents.

We hit the beach club on Wednesday. Morgan was VERY comfortable jumping in the waves without an adult present and "swimming" in the pool without her floaties on. Her confidence in the water has greatly improved since last summer. Once again, she made new friends with a lot of other kids who were also visiting their grandparents. Morgan's pick-up line goes something like this, "Hi, I'm Morgan. I'm visiting my Grandma and Grandpa. I live in California. Do you want to play with me?" Of course, some kids just look at her strangely (maybe she's TOO bold?!?!?), but most are happy to have her as a playmate.

Yesterday Morgan went to the Nature Center with Grandma and Grandpa and I stayed home with Allyson while she napped... and got to enjoy some sun-time on the deck by myself! We also dropped the crab trap in the waterway and were thrilled to see that we'd caught ONE just a little while later. We also celebrated Morgan's 5th birthday for the 5TH time and had dinner out at Zachary's restaurant and then opened presents back at home. Allyson also got in on the 5TH celebration by taking 5 STEPS all by herself!!!! I'm not sure if that counts as 'walking' yet, but she's getting closer and closer. After repeating the 5-steps two or three times last night, she's been back to crawling most of today. If I have an Internet connection next week, I'll be sure to share the good news when her walking is OFFICIAL! I have a feeling that day is just around the corner!

Today we went to the beach again. The temps were a little cooler, the waves were calmer, and Morgan ventured out into the ocean with her floaties with me and Grandpa. She squealed whenever the gentle waves lifted her up and seemed to love the freedom in the water. I took a picture of her to e-mail to Mark so that he could see her enjoying the ocean like he does! Allyson also took to the water today and sat on the shore while the waves came in. She splashed in the water and crawled around in the wet sand. Later, she feel asleep under the cabanna and snoozed for about 45 minutes. We all had a great time and I even got to sit in a chair and read my book for a few minutes. You know that hardly ever happens when you're at the beach with two kids!

We had the pleasure of meeting Crystal Register and her children, Cassidy and Jeffery, this afternoon. Many of you know that Jeffery is affected with EEC like Allyson and it truly is a GOD-wink that the Registers and the Kelsos attend the same church in Southport. It was wonderful to meet Crystal and the kids. Jeffery thought Allyson was pretty cool! All the kids played well together... Morgan had Jeffery running around the house chasing after her within 15 minutes of them arriving. And you wonder why she has so many boyfriends?!?!?! Crystal and I had time to talk and share info and just connect in person. We both said we felt like we've known each other forever and she said that seeing Ally brought back so many memories of when Jeffery was younger. I was so impressed by Jeffery and all that he's accomplished. It was a wonderful way to spend the afternoon and wrap up our week here!

Hope your week has been great! Happy 4th of July weekend! Be safe and we'll update you from Nags Head, if possible!

Love to you all-
Kristin

Sunday, June 25, 2006 8:49 AM CDT

OH WHAT A RALLY!!!!!!!!!!!!

Yesterday's event was fabulous! The rain held off until late in the evening (and hasn't stopped since...). I wish I could capture in words how wonderful everything was. I was truly overwhelmed and amazed and awed (but NOT SURPRISED!!!) by the outpouring of love and giving and generosity. Mary Kaye Richter's attendance made the day perfect too! I hope that everyone who attended will add their "favorite part of the Rally" to the guestbook. THAT would be great to see and hear and read!

A million thank yous to you all who supported us in person and through donations (Dani, your raffle items ROCK!) and in spirit. The initial tally is around $7000. That doesn't include any donations sent directly to the NFED or any checks that might still be "in the mail." Not too shabby for a "backyard bar-b-cue".

New pictures are up... Morgan's Chuck E Cheese party starts in 2 hours, so I need to run, but I wanted to give a big Rally "shout out" and especially thank Ashli and TG for ALL their hard work!!!!!

Love you all!

Kristin

Monday, June 19, 2006 9:24 PM CDT

Hope everyone had a great Father's Day weekend! Aimee, glad to hear you arrived in VA -- although what a series of events it took to get you guys here. Can't wait to see you later this week.

Tuesday is Teetay's LAST DAY of TEACHING EVER!!!!!!!!!!!!!! Can you believe it?!?!?!?

She will have lost all her marbles for sure by then. It's been wonderful being here to celebrate her retirement and see how she brings together so many wonderful friends.

We're having a great time. Things have been a good mix of relaxing and busy... Morgan and Allyson are having a ball. I'm getting to relax a bit and take care of things around the house for Mom and Dad... it's funny that I can't find time to do laundry and empty the dishwasher in the same day at MY house, but I can at theirs... hhhmmmm, what's THAT all about?!?!?!

Hope you enjoy the new pictures! I'll keep posting more as the week progresses!

Looking forward to seeing lots of you on Saturday at SARFA. Pray for NO RAIN PLEASE!!!!

Kristin

Friday, June 16, 2006 12:20 AM CDT

HAPPY BIRTHDAY TO MORGAN!!!! My BIG girl is 5 today!!!! I can hardly believe it… however, Morgan and I had funny conversations (of sorts) this morning which PROVED to me that she really is 5 years old… It went something like this.

Before getting dressed this morning, I reminded Morgan to go to the bathroom. She snapped back (although sweetly), “you can’t tell me what to do.” I thought she was going to continue with something like “…because it’s my birthday.” Instead, she stopped at the first statement. I responded, “oh really?” which prompted her to wave her hand across the word on her new pajamas given to her by cousin Leslie and family for her birthday. Morgan then said, “you see this word… what does it say?” I smiled and said, “DIVA.” Morgan responded, “That’s right, I’m a Diva and you can’t tell me what to do.” Well, if it hadn’t been her birthday and if she hadn’t been so cute about her proclamation, I probably would have been mad about her talking back. We laughed so hard and Morgan later said, “it’s okay, Mommy. You can tell me what to do a little bit.” How cute is that?!?! You’ve gotta love her… 5-year old attitude and all!

Now for the REAL update…

Hello, Everyone! This is my THIRD attempt to post a new journal entry since arriving in VA Tuesday night. Apparently, someone or something is trying to keep me from updating you.

As you’ve read in the guestbook, we’re having a great time at Teetay and Geep’s house. It’s been non-stop entertainment and we especially enjoyed the one-on-one time with Aunt Dale/Aunt Grammy. Both Morgan and Allyson showed off all their “best tricks” and loved the attention! Morgan and Aunt Grammy made a caterpillar cake (I’ll post pictures another day), made a suncatcher, cruised on the scooter, played on the playground (aka Teetay's backyard), and got wet and wild on the slip-n-slide. There hasn’t been a dull moment yet… and I doubt there will be over the next four weeks…

Last night was Teetay’s retirement dinner/ceremony with the staff of Franklin Middle School. It was a beautiful presentation full of love, respect, and admiration for Mom and the other six retirees who were honored. I’m so glad we all could be here to celebrate this special (and momentous occasion!) The festivities continue tonight as we celebrate Morgan’s birthday with a cookout at Ashli and TG’s house. Tomorrow night is Teetay’s retirement bash with 100 or so of her closest friends at a local restaurant. Of course, Father’s Day is Sunday and I hope that Geep will let us take care of him and make him “king for a day” since he’s always running around taking care of things for us! Next week, we have plans to get together with some of my high school/college friends as we gear up for the 2nd Annual Rally for Ally on June 24th. It’s going to be a fun month for sure!

Thank you all, as always, for all the support, prayers, special thoughts you’ve sent our way. Happy Father’s Day to all the wonderful dads out there! We’ll miss being with Mark on Father’s Day and hope that he’s able to enjoy this weekend out on his ‘big boat.’

Love to you all!
Kristin

Tuesday, June 13, 2006 1:25 AM CDT

We're ALMOST ready to go!

Sorry that I have been too busy to update the journal in so long...

I promise to post some JUNE pictures and give you the scoop on what we've been up to once I get to Virginia.

All is well - thank you for your continued prayers and support.

Love you all lots! I'll be seeing some of you very soon. Off we go....

Kristin

Thursday, June 1, 2006 9:06 AM CDT

HOORAY! WE HAVE OUR CAR BACK!!!!!!!!!

The 4Runner was found yesterday at the Chumash Casino approximately 75 miles north of where we live. The 'couple' (yes, the REAL Maria and Fernando) were arrested at the casino attempting to use a stolen credit card (not mine). They were at the casino last week attempting the same thing and secure got them on camera. When they returned to the casino yesterday, they were identified on camera by casino security and the police were called. After seizing their personal belongings, the police used the 'panic' alarm on the keyless entry device for the 4Runner and found the car in the casino parking lot. They ran the VIN number and found out that the car belong to US and NOT Maria and Fernando (not to mention that OUR registration and insurance info was still in the glove box). The license plates had been replaced with 'dummy plates' from a used car dealership. The exterior is in really good shape - the only damage we noticed was the broken radio antenna. The inside is kind of trashed - dirty, smelly, etc. I think they were actually living in the car as well as 'huffing' fumes (there were cans of Easy Off and gasoline in the car too) and smoking. The police removed all the personal belongings from the car prior to our arrival. The sergeant described some of the items to me and it sounds like it was mostly THEIR stuff. I have to make a trip to the police dept on Friday to identify anything that might belong to us. Of course, all the BIG stuff was gone - cameras, iPod, carseats, stroller, feeding pump. My phone was still there (which the police still have so they can investigate the numbers Maria and Fernando called), my phone earpiece was there, and Ashli's phone charger was still there, and three CDs of mine in my CD case along with a bunch of THEIR CDs. Anyway, Mark drove the 4Runner home and we'll have thoroughly checked out by a mechanic this week.

We were so shocked that it was actually found! Morgan was happy to see "the red car" again and asked if the bad guys took her carseat. She wanted to ride home in it, but I explained that we needed to take the other car with the carseats in it. She still hasn't asked about all her stolen Princess CDs...

So that's the scoop as I know it! I'll probably have more info after I go to the police station tomorrow. Allyson has an appt with her ENT doc today in LA, so I'm off to that now.

Thanks for your prayers... once again they've been answered! Happy June! Happy day!

Love,
Kristin

Tuesday, May 30, 2006 10:05 AM CDT

Hello! Hope everyone had a glorious Memorial weekend! The sun was shining here all weekend (the first NICE weekend we’ve had in a long time) and we had lots of fun enjoying the outdoors, going to the beach, and spending the afternoon with neighbors on Monday – swimming, eating, drinking, etc. On Saturday, we headed to the sandy shores yesterday, but the wind was too strong - putting quite a chill in the air and stinging our ankles with blowing sand. The girls played in their pool on the patio for a little bit before getting too cold and wanting to come inside. By Sunday afternoon, the winds had died down, so Mark and Morgan headed back to the beach for some wave-jumping and sand castle building. Allyson was napping, so I stayed home with her and got some quiet “Mommy time.” Yesterday was lots of fun too. Morgan didn’t want to get out of the pool… even when it was time to eat hot dogs and potato chips! Allyson went for a little dip in our neighbor’s pool as well, but didn’t enjoy it very much. I think it had more to do with being tired than not ‘liking’ the water. We’ll try swimming with her again in a few weeks!

As promised, I need to update you all on Allyson's FOUR doctor visits from the past week. There’s a lot of info to share, so grab a cup of coffee and a snack before you read on… this may take awhile!

Wednesday, May 24 - SWALLOW STUDY This was Allyson's third videofluoroscopy and first since her palate repair. The goal was to check her swallowing function and in particular, test her ability to 'handle' liquids and REAL solids like a vanilla wafer and cracker. (We already know that she can handle purees like baby food.) The GOOD news is that her swallow function is FINE. No problems at all! She managed the liquid perfectly, however it was given to her via syringe. She still is not able to suck and control the intake or liquids, but once it's in her mouth, she's fine. Allyson was able to swallow the cookie (from what we could tell) just fine as well. However, it appeared that the majority of the cookie went up through her palate and into her nasal cavity. (There could be small holes in her palate which may or may not close over time - this is only a little unusual). The OT in charge of the test suggested that Allyson might benefit from a 'palatal lift' which is essentially a retainer (here we go again...) that would cover the roof of her mouth and facilitate better eating. Of course, her recommendations will have to be discussed with Allyson's team of doctors to determine the course of action. So, one question answered and more questions asked...

Thursday, May 25 – OPTHAMOLOGY Allyson had her six-month check-up with Dr. Davidson who evaluated the health of her eyes and tested her vision. Overall, she’s doing well, but he found that she has astigmatism in both of her eyes. This is fairly common in children (as well as in the general population). Allyson’s case is not severe at this time and Dr. Davidson will evaluate her vision again in six-months. As she approaches her second birthday, he may recommend glasses. Right now, she’s probably only experiencing mild blurriness when small objects are far away which is still consistent with ‘normal’ vision for her age. So, like many other things… we’ll just have to wait and see…

Friday, May 26 – NEUROLOGY Allyson saw Dr. Goldie for a six-month follow-up appointment. We reviewed her progress and development over the past six months. Dr. Goldie never even touched Allyson for an examination. He observed her playfulness and activeness as she crawled, cruised, talked and played with toys. He said she’s doing “remarkably well”(as we already know, right?) We’ll see him again in six months. He agreed that there is no reason to be concerned about her brain development.

Saturday, May 27 – OVERNIGHT SLEEP STUDY Yes, it was time for Allyson to have another sleep study to see how her sleep apnea has been affected (improved hopefully) since her palate repair. I accompanied her to the Moonlight Sleep Lab (Mark went with her last summer) and we settled in for the night. It took Allyson awhile to get to sleep. She was excited about being in a new place and wanted to explore the hotel-like room. After FINALLY getting into a deep sleep around 10:45pm, the technician hooked her up to all the electrodes and probes and began to monitor her sleeping patterns. I settled into the recliner nearby and got a little sleep myself. Allyson only awoke twice when she turned over and sensed all these wires hooked up to her. When the tech woke us up at 5:00 am, she said Allyson had done ‘very well’ and that most children her age only sleep for 1-2 hours because they’re so bothered by the wires stuck to them. Allyson was able to give 5-6 hours worth of sleep patterns, which will be helpful in evaluating her issues. The report I forward to her pulmonologist who will read it and discuss with us at Ally’s June 12th appointment. More details to follow…

So, THAT covers all of our appointments from last week. Still no news about the car... USAA will settle the claim on June 8th (three weeks from the date of the theft) if it’s not recovered by then. We’re getting a rental this afternoon that Mark will drive until we leave on our trips in a couple of weeks – the girls and I to VA and Mark to the boat. Allyson has a bunch of appointments over the next two weeks before going out town. I’ll update you all on those as they come up. We had a week off from Pablo last week due to his schedule commitments and ours, so we’re anxious to resume those sessions this week. Allyson is still standing on her own and cruising and climbing everywhere… I’m pushing her to take those steps and walk for her grandparents!

Please review the SARFA evite and e-mail Ashli with your raffle, silent auction, or potluck contributions. The 2nd Annual Rally for Ally is less than a month away! We received confirmation last week, that Mary Kaye Richter (Founder and Executive Director) of the NFED will attend our fundraising event. Mark and I had the pleasure of meeting Mary K. in San Francisco last weekend and this is a HUGE honor for us! Let’s show the NFED how strong Ally’s team is and reach our goal of $10000 this year!

Thanks for your continued support and encouragement for all of us. Have a great week!

Kristin

Friday, May 26, 2006 9:12 AM CDT

Happy Memorial Day weekend! I'll write more later about Allyson's doctors' appointments from this week. Just wanted to let you know that there are new pictures posted FINALLY! I bet you were tired of seeing that big, pink bow picture every time the site popped up.

NO news on the car... I guess the more time that passes, the less likely a recovery is... USAA should be settling our personal property claim next week, so we can replace some "stuff". I'll keep you posted.

Hope everyone has a HAPPY and SAFE Memorial Day weekend. Happy First Anniversary to Aimee and Jim on Monday. Enjoy your family getaway and we'll see you soon!

If you haven't responded to the SARFA evite (link is below), please do so. With the fundraiser less than one month away, now is the time to COMMIT to donating raffle or silent auction items as well as bringing a side dish or something to share at the potluck. Ashli will be updating the evite with new info soon.

Thank you, as always, for your support for Ally and our entire family. I am continuously awed and inspired by the outpouring of love we receive. We are truly blessed...

Kristin

Tuesday, May 23, 2006 10:56 AM CDT

Hello everyone! Yes, we've been BUSY here in California! Aunt Ashli arrived last Thursday and we've been doing lots of stuff since then...

Our trip to San Francisco/Oakland was great. Morgan and Allyson had fun with the Lacki family. Ashli was a "pro" taking care of ALL of Allyson's 'stuff' after a very brief 'lesson' on Thursday night and Friday. Alina, Reb and David's 5-month old, and Allyson 'played' together and were so much fun to watch. Morgan planted a vegetable garden with David and can't wait to return to their house to see how 'her garden' is growing.

Mark and I were THRILLED that we attended the NFED's Regional Conference on Saturday. Our experience was wonderful and we met so may great ED families. There's too much to write here, but suffice it to say that our trip was worth every minute. We met two other families who each have a daughter affected by EEC. Of course, it was great to connect with them and share our experiences, answer questions, give advice, etc. After the conference, Mark and I enjoyed dinner together in San Francisco and walked around Pier 39 people (and sea lion!) watching. We all came home Sunday afternoon. Mark was especially happy to be home after almost 4 weeks away.

The five days, however, have not been without its challenges... (and the BIG reason I haven't updated the website, Aimee and Holly). Our Toyota 4 Runner was stolen from our garage on Thursday afternoon. We had just returned home from picking Ashli up at LAX. Ashli and I had partially unloaded the car, but knowingly left some things inside. About 15 minutes after we got home, I walked back out to the garage to retrieve the rest of the stuff and the care was gone! It was such a surreal feeling!!! I had left the garage door open since we were planning to leave the house in about 30 minutes to take Morgan to her ballet class. My purse and keys, phone, camera, etc. were still in the car. Ashli's camera and IPod were still in the car. Of course, all the normal stuff (two carseats, stroller, diaper bag, etc.) were still in the car. The door from the garage to the house was unlocked and the four of us were inside. Thank goodness, "the bad guys" (as Morgan called them), only wanted our stuff... it's replaceable. As of this morning, it has not been recovered. We spoke with a detective yesterday and are hopeful that the car will be found. I replaced my cell phone yesterday and immediately began getting calls from people I don't know and for people other than myself. The police now have the numbers of those people who placed calls to me, so maybe that will lead to something...

So, I've been dealing with all the crap associated with having my wallet and keys stolen. We had the locks changed on the house immediately. Ashli rented us a car for the San Fran trip and was the sole driver. Yesterday, Mark took the day off to drive me around and I replaced my military ID, driver's license, and cell phone. Credit cards and ATM cards have been cancelled. Insurance claims have been filed, etc., etc. For anyone who's been through this, you KNOW what a pain in the rear it is!

Everything else is fine and this too shall pass... We have some new pictures taken with Mark's digital camera, so I'll post those soon. Hope you all have a good week and I'll update again soon!

Kristin

Monday, May 15, 2006 5:00 PM CDT

Happy Monday to you! We're looking forward to Thursday this week when Aunt Ashli arrives and Friday when we get to see Mark again! Let's hope the next few days go by FAST!

Dani, you're entry and Jamie O'Neal's song (I went to the CMT's website) had me crying buckets this morning. I didn't check Allyson's website after about noon yesterday, so I didn't see your words until today. Thank you for yor sweet sentiments and for sharing your thoughts with all of us! I love you! :-)

The girls and I had a wonderful Mother's Day. Morgan slept 'late' and didn't wake me up until 7:15 yesterday. I had promised her that we'd go to the beach if it was sunny. Of course, the May Gray continued... WE had fun playing around the house... tickling each other and helping Allyson with her walking. In the afternoon, Morgan suggested we go to the mall. I asked her if she wanted to buy me a present for Mother's Day. Initially, she said "no", but then reconsidered and said "yes." When I asked her to bring her money, she said she didn't have any and that I could give her some out of my wallet. (I usually NEVER have cash on me, but she must have remembered that we went to the ATM the day before). We headed out for the mall and were half-way there when the sun APPEARED for the first time in over a week! Morgan and I agreed that we should turn around and go to the beach. So we did. Morgan was delighted to see her friend, Grace, from school when we arrived at the Beach Park. The two of them played in the sand and surf and got completely soaked in their clothes. They were squealing and giggling as only girls can do and it was so much fun to watch them enjoying themselves! Allyson crawled all over the sand once again and even tasted the sand AND laid down (face first) in the sand! Can you say "messy"? When we approached the water, Allyson clung onto me at first, and then she decided she wanted to explore some more. She sat and played in the hard, wet sand for awhile and then took off crawling right for the ocean! I think she would have gone right in if I hadn't stopped her. The waves were BIG and crashing all around us. Mark would have loved to go boogie-boarding yesterday. With Memorial Day just around the corner, I think we'll have to plan a family beach date for that weekend! (Along with a million other people across the country!) All in all, it was a fun day. I made myself a special Mother's Day dinner (after Mark talked me through switching out the propane tank on the gas grill...) of filet mignon, stir-fried zucchini and mashed cauliflower. It was quite enjoyable, if I do say so...

It was great talking with my mom, Aunt Ashli, Mark, and Uncle Josh and receiving so many Mother's Day wishes! Sorry I missed talking with you, Mom K. and Merideth when I called. Hope you both had a great day and were out doing something fun together!

Have a great week!

Kristin



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Saturday, May 13, 2006 11:05 PM CDT

HAPPY MOTHER'S DAY to all the terrfic moms out there and Happy Birthday to nephew Spencer who turned 3 on Saturday! Hope everyone is having a GREAT day!

My Mother's Day began on Friday when I received the most beautiful card and handprint from Morgan. She made card that 'bloomed' with a bouquet of flowers when I opened it. She wrote "Happy Mothrs Day I love you Morgan" (that was not a typo in mother) in all different colored crayons. I love the card and the handprint with "I LOVE MOM" around the plate. One of my first handmade gifts! Hooray!

On Saturday, the girls and I attended the Mommy and Me "Royal Tea Party" at Barnes and Noble. The afternoon began with stories about Moms and stories about royalty. Then, Morgan was in HEAVEN with all the crafts. She made a picture frame out of puzzle pieces and the three of us had our picture taken to put in it. She decorated a paper crown, made a magical scepter, got her face painted, and had a BLAST doing everything. Both Morgan and Allyson made their handprints on paper with a Mother's Day poem printed alongside it. Two sets of friends joined us for the 'party' and festivities and we went out to dinner at Applebee's afterwards. It was a fun-filled day and a great way to spend Mother's Day Saturday.

NOW FOR THE BIG...BIG...BIG... NEWS OF THE WEEK!!!!!!!!

Allyson is ALMOST WALKING on her own!!!! She's getting so close!

On Thursday, she stood up behind her walking/push toy and walked across two rooms and then turned around a walked back. Pablo was behind her to catch her in case she fell and I was infront making sure she didn't push the toy out from under her. She really didn't need our help and didn't hesitate one bit! Today, she's been pushing it around all over the place like she's been doing it for months. Allyson is also attempting to stand up without holding onto anything every chance she gets. When I talked to Mark on the phone, he can't believe how much more she's doing in just a couple of weeks. Hopefully, she'll be walking in time to greet Teetay and Geep and Grandma and Grandpa when we go on vacation a month from now. THAT would be cool!

We don't have any plans for Sunday... we'll just see how the day plays out. I asked Morgan to try to sleep a little later in the morning (at least until AFTER the sun came up... please!!! She awoke at 5:45 a.m. this morning, but fortunately, fell back asleep with me for a half-hour or so.) When I told her that I'd like to sleep a little later on Mother's Day, she asked "why?" I told her that Mother's Day was a special day for Moms to do whatever they want. Her response was, "don't you want to get up and make me breakfast?" You gotta love her and her thought processes!

Well, I'm off to check on the girls and enjoy an hour of mindless tv-watching... maybe a glass of wine too... It's my time to do whatever I want! Yippee!

Happy Mother's Day to all and to all a good night!

Kristin

Thursday, May 11, 2006 0:27 AM CDT

Hello! Hope you've been having a good week. After a good weekend with the girls which included a trip to the farmer's market, playing at the beach, and washing the car, I woke up with a MAJOR pain in my neck Monday morning. I must have turned over "funny" (or NOT so funny...) and pulled something. I couldn't turn my head to the left (the pain was on the right side) for the whole day. It made driving VERY interesting! Anyway, it's still sore, but MUCH better than Monday. Thankfully Connie was taking care of Allyson, so I was able to take a long, hot bath and 'rest my neck' while I ran errands. Unfortunately, I couldn't go to the gym, so I'll have to make that up tomorrow!

We had dinner with Parker and his family last night. Morgan was so excited to have another DATE with her "neighborhood boyfriend." The kids played well together and Morgan an Parker sat at his special Star Wars table and ate their dinner. After dessert, Morgan was lying on the couch and Parker was tickling her while she squealed and giggled. I looked at Parker's mom and dad and shook my head saying, "... and this is how it all begins..." We all had a good laugh!

Yes, as Ashli mentioned, Allyson has a BOW in her hair today. I was so excited that I could actually gather some hair and clip it in for the first time! Ally didn't even seem to mind it. I often get comments from strangers about her being a boy. I thought the bow would help alleviate those questions, but an employee at Target today saw her in the shopping cart and said, "HE'S cute!" I guess that says a lot about the intelligence Target's employees! (Aims, THAT comment was for your enjoyment! :-)) Seriously, I love Target and I'm sure their employees are smart, but this one got it ALL wrong when it came to Allyson's gender! Anyway... must have been the yellow outfit!

Allyson has been getting stronger and is now getting into a standing position without holding onto anything. She doesn't hold her stand for long, but she's continuously trying to. I'm sure that walking isn't too far around the corner!

Hope you have a great weekend ahead! Happy Mother's Day to all my favorite moms out there! (FYI, ALL the Moms who read this site are my favorites!)

Love,
Kristin

Saturday, May 6, 2006 11:31 AM CDT

Good morning! I'm happy to report that all the girls in the house are feeling much better this weekend than we did last weekend. Allyson has been on the mend since Wednesday and just a couple doses of eye drops cleared up her gunk. Morgan and I were better by Thursday. Morgan visited her doctor on Wed. morning after complaining about a sore ear and having a much worse cough. However, she was 'diagnosed' with just a cold and received some heavy-duty nighttime cough medicine. She stayed home with Ally and me on Wednesday, but was at school the rest of the week. We're all a lot happier now that we're feeling good!

Connie took care of Allyson on Thursday and Friday and gave me some Mommy time. I got to go to the gym both days and run some errands. Morgan had her ballet class on Thursday and since I was 'without Allyson', I became the self-appointed "Bathroom Chaperone" for all the little girls who needed to go potty during class (Morgan included, of course!)

Last night we went to a Cinco de Mayo fiesta and had fun with other squadron spouses and their kids. Morgan played wonderfully with the other children and Allyson made friends with a 14-month old boy named Benjamin. Both girls fell asleep before the party was over, so I was able to enjoy some time (and some margaritas!) with my friends.

We were up bright and early this morning to deliver our 'donations' to the basewide yard sale. Another spouses group is utilizing the yard sale as a fundraiser and I was happy to unload a bunch of my baby gear (strollers, infant carriers, bouncy seats, etc.) and clothes that Allyson has outgrown! Even though I THOUGHT I'd already given a LOT away, it's amazing how much stuff I had accumulated in just over a year's time! I know that many of you can relate... My garage is still chocked to the brim, but there's a little breathing room for 'new' stuff that will make its way in there soon. Ah, when will Maria and Pilar return to wave their magic wands?!?!?

This afternoon we're planning to see a dance performace called "Puppets without Strings" that Teacher Pam has choreographed. Morgan is excited to see older kids (age 8 ) dance in their big show! Tomorrow we might go to the beach if the sun comes out and the temps warm-up. Southern California is know for having overcast skies in early summer, often called "June Gloom." I've recently heard the local weatherpeople referring to our current weather situation as "May Gray"... so much for sunny So Cal... it may be a thing of the past, although I hope not!

Morgan and I talked to Mark this morning and he's had a good week in Fallon, NV. The flying is pretty intense, but he seems to be enjoying it! He said it's challenging, but he's learning a lot. That's why they call it "training" afterall. This afternoon, he'll head to Lake Tahoe for a night's "R&R" with the other guys in the squadron. He said he misses his three girls and is looking forward to being home again in a couple of weeks. We miss him too!

Have a great weekend!

Love,
Kristin

Tuesday, May 2, 2006 11:44 AM CDT

Good morning all! We're all still a little under the weather here. Morgan and I are dealing with croupy coughs and Allyson has goopy eyes and a left ear infection. She's on antibiotics now and has drops for the eye mucous. Dr. Huang took good care of her yesterday and gave her heavy-duty stuff to make her feel better. She slept soundly last night, so I think it's working!

Please say BIG TIME prayers today for Holly's good friend, Lynn Newman, who is undergoing intensive chemotherapy treatment today for her recurring cancerous tumors. She's exhibited such courage during her battle with cancer. To read more about Lynn's story and see her beautiful family, visit her website at www.caringbridge.org/tx/lynnnewman. I'm sure she'd love to hear from all of Allyson's friends and family in her guestbook. It's because of Lynn (via our friend, Holly) that we found out about CaringBridge and started THIS website for Allyson. It really IS a small world afterall and the circle of life lives on in each of us...

That's all for now. Pablo should be here soon for Ally's therapy session. Have a good week and Happy MAY!

Kristin

Saturday, April 29, 2006 1:44 PM CDT

Happy Birthday to YOU! Happy Birthday to YOU! Happy Birthday to AUNT ASHLI… Happy Birthday to YOU!

Hope you’re having a great 30-something birthday, Ash! Hiking… wine tasting… relaxing at the waterfront tonight with TG, Teetay, Geep, and friends… It's sure to be a great birthday for you! Glad you liked your “Lovely” perfume set. Can’t wait to see you in 2 ½ weeks!

Now for the update on our week… Allyson had a speech evaluation at CHLA on Monday. This is usually done around 18-months old, but between our travels in June/July and appointment availability, we had to schedule this appt. a little ‘early.’ The Speech Therapist spent about an hour with Allyson and me. We discussed her medical history while she played and spontaneously made her sounds and ‘words.’ The ST said that she was pretty much ‘at age level’ with her speech. Even though she doesn’t ‘babble’, Allyson makes enough sounds to ‘count’ as appropriate speech. His most impactful comment was regarding the relationship between WALKING and TALKING. He said that children who weren’t walking yet generally didn’t make as many sounds as others their age or younger who were walking. He talked about the need for a strong trunk as it relates to walking and talking. I guess I really hadn’t thought about that before, but it made a lot of sense. The ST also reviewed the services we were receiving through Pablo and CCS (California Childrens Services) and with 5 hours/week, he felt like we were getting everything we could and he didn’t have any recommendations for additional services at this time. When Allyson is 18-months old, he recommended that she receive dedicated speech therapy services on a weekly (or ever other week) basis, which will be provided by Early Intervention Services. Right now, the oral motor therapy she receives is sufficient. We’ll have a follow-up with the ST at CHLA in October as part of our next Craniofacial team visit.

Onto other stuff… Mark left for Fallon on Wednesday to get the squadron’s spaces set-up and ready for the 3-week training that begins today. He’s missing his girls, but is glad to be back in “work-up” mode where the training is intense as they prepare for the next 6-month deployment. So far, Morgan and Allyson have been GREAT… other than Allyson having one “bad” night where she woke-up every 30-40 minutes until I ‘coaxed’ her back to sleep with some Tylenol… (Her wake-ups are probably related to the reduction in her nighttime volume of formula and/or a little bit of a cold) and Morgan having an early morning “wake-up call” to go to the bathroom which was accompanied by a little nosebleed (weird!)… things have been NORMAL around here! :-P Are you laughing?!?!

We had a really fun night on Friday. Morgan’s quote was “This is the best night EVER!” After picking up Morgan at school, we went to Red Brick Pizza for the first time. The pizza was yummy and the best part was having a small flat screen TV at each booth! We’ll definitely go back! Allyson showed off her "Houdini" skills by wiggling herself out of the high chair (she was strapped into one of those wooden high chairs you often find at restaurants) and proceeded to CLIMB up on the table. I think she wanted to get a closer look at the TV! Morgan and I were cracking up and couldn't figure out ow she managed to do that... and so quickly too! After dinner we went to Barnes and Noble for story time. Morgan loved hearing the zoo-themed stories, doing a zoo craft (gluing stripes on a zebra), and getting gummy fruit snacks for a treat! We also picked up a flyer for the Mommy and Me Royal Tea Party on May 13th. We reserved our spot and are looking forward to that in a couple of weeks. We got home a little after 8 p.m. and both girls stayed up later than normal! Of course, only ONE of them (Allyson) slept in this morning. Morgan was up at her ‘usual’ 6:30 a.m. asking for pancakes and juice.

We don’t have much planned for the rest of the weekend. Maybe a trip to the mall or to the park if the sun decides to shine today...

Hope you’re having a great end-of-April weekend! Happy, happy birthday to Ashli! Love you lots!

Kristin

Wednesday, April 26, 2006 6:06 PM CDT

Enough of those crazy kids from the 80s already! Here's the main attraction... back in action!

More later... time to pick up Morgan at school. Need to provide updates on Monday's Speech Eval and Mark's departure for Fallon, NV. He'll be away for 3+ weeks. Girls rule the house! :-)

Hope you're having a great week!

Kristin

Sunday, April 23, 2006 9:26 AM CDT

Here's a look at the coolest couple from the 80s! The party was lots of fun -- I haven't danced that much in years... and especially not in 3-inch heels! Enjoy our retro looks!

Kristin

Saturday, April 22, 2006 9:31 AM CDT

Good morning! Hope you've had a good week. We've been very busy and our Saturday is VERY hectic, so let me update you while I have a spare minute!

Allyson had a couple of appointments this week in addition to 3 sessions with Pablo. On Tuesday, she had her semi-annual evaluation at the Therapy Center we're the PT and OT assess her progress with the on-site Pediatrician and Orthopedist. Ally has been achieving the goals set for her and is "doing very well" in everyone's opinion. The pediatrician commented that maybe she wouldn't even need these services a year from now... that's hard to imagine, but encouraging at the same time! Their biggest recommendation was to re-evaluate her feeding regimen and increase the quantity of her oral feeds. We're also going to focus on fine motor skills with her RIGHT hand. She is able to grasp "tip to tip" (thumb to 4th finger) with her left hand, but crosses over tip to tip with her right. Allyson's right hand is stronger and she uses it primarily for lifting, grabbing, and handling larger/heavier objects. Although she may be "perfectly ambidextrous" meaning that she'll use her right hand for strength and her left for dexterity, we will continue to use therapy on her right hand to help her with the fine motor skills. I've really been impressed with everyone's attitude to "push" her to the maximum and not to assume that she "can't do it" because of her physical anomalies.

On Wednesday, we saw Dr. Huang who gave Allyson another synigist which is the shot that combats RSV disease. This is her 4th monthly shot that he ordered as a preventative measure. Allyson has not been ill at all during this flu season (other than her stomach bug in Feb.), and I believe that's largely due to her having these shots. Thank you, Dr. Huang! And thank you to our insurance who actually covered them! :-)

Yesterday, Allyson had an appointment with Dr. See, her gastroenterologist. We discussed her feeding regimen and Dr. See recommended that we reduce her formula by 8 oz./day. Now we'll be able to feed Allyson on a fairly 'normal' schedule... baby food by mouth at breakfast, lunch, and dinner followed by 8 oz. of formula through her g-tube. She will no longer be fed continuously overnight (or 5 hours from 8pm-1am like she has been). That means that Mark and/or I don't have to get up at 1:30a.m. to turn off her machine! Hooray!

Morgan is feeling better and returned to school this week with gusto. She's so excited about going to Kindergarden (she talks about it everyday!) and I hope her enthusiasm will continue all the way until September! I think the hardest part about the transition will be "NO NAP" as this sweet girl still sleeps for 1 1/2- 2 hours every afternoon! REALLY, she does! We'll have time this summer while on vacation to help her transition from that, I hope!

Morgan also began a new session of ballet classes on Thursday. She's taking a ballet/jazz combo class for ages 5 and up. She's the youngest in the class, but you'd never know it! Morgan was the social butterfly introducing herself to everyone and asking their names. She told all the other girls that Teacher Pam was a good teacher and that they'd learn a lot from her! It was so cute to see her relax and perform!

Today we have lots going on... I have a bridal shower this afternoon while Morgan has a birthday party for her classmate, Lucas. Tonight Connie will babysit the girls while Mark and I go to the 70s/80s party dressed as 'Don Johnson' and 'Madonna.' We'll take pictures and I'll probably post one for a 'few minutes' so you all can see!

Have a great weekend! Happy Earth Day!

Kristin

Monday, April 17, 2006 9:03 AM CDT

Good morning! Hope everyone had a glorious weekend!

Morgan is feeling better... she was pretty pitiful all day Saturday, but seemed to get "back to normal" by yesterday afternoon. She proclaimed last night, "The sickness is gone!" with a sweeping motion of her hands.

We attended church yesterday morning and although we had to separate because of the crowd, we all enjoyed the service. Allyson was a squirmy wormy (as usual) and I felt like I was wrestling an alligator trying to keep her contained. She fortunately fell asleep for a half-hour and I said an extra prayer to God for that!

Morgan had a ball with our patio Easter egg hunt! I think she found all the eggs and filled up THREE baskets! After naps, we went to see "The Wild" and thought it was great. Allyson was peacefully sleeping in her stroller for half of it and then it was back to "alligator wrestling". I eventually had to leave the movie with her! She just doesn't like to be contained in ANY way!

We had an UNconventional Easter meal of filet mignon, garlic mashed potatoes, asparagus, broccoli, and salad. The food was fabulous and we topped it off with a new bottle of Monterey County wine from the MORGAN vineyard. Yum! Yum! :-)

Teetay and Geep fly back to VA this morning. We had so much fun together and can't wait to see them again!

Have a great week! Hope you enjoy the new pictures! I have tons to share, so you'll probably be seeing Easter pics for awhile!

Kristin

Saturday, April 15, 2006 5:29 PM CDT

Hello all! Hope you're having a wonderful Easter (or Passover) weekend. We have sunny skies here and are enjoying our time together. We're "laying low" today as Morgan has come down with a stomach bug. She started throwing up last night and didn't stop for about 10 hours. We took her to the medical clinic on base this morning and got her some anti-nausea medication (the same meds that Allyson had in February). Morgan was so pitiful and so apologetic for having a 'silly tummy' again. I don't think it was party related this time (although she did have her Easter party at school on Friday). The 'bug' came on much later and there was no evidence of 'party food'... if you know what I mean. So, she's on her second nap of the day and we're all taking it easy since the night was rough for everyone! Our plans to see "The Wild" have been postponed until tomorrow afternoon - assuming everyone is feeling well. Morgan also had a birthday party to attend today, but we're missing that as well. Let's hope Allyson doesn't come down with this too. We're all doing EXTRA hand washing and trying to keep the girls separated when possible. I'll keep you posted on our health issues if there's any more to tell...

Our trip to Monterey was lots of fun! We endured the rain on our one full day there, but it didn't slow us down. The Monterey Aquarium was great and Morgan and Allyson had fun at the touch pools and seeing all the cool fish. We met up with Rebecca and baby Alina. Allyson was a "brute" and tackled Alina while she was laying on her blanket. She introduced herself with a not-so-gentle smack on Alina's face. Who knew that sweet little girl of mine could be so aggressive?!?! I had fun shopping with Reb (little sis #2) and Alina while my girls napped with Teetay and Geep back at the hotel. On Wednesday night, we were thrilled to see a double rainbow while we were having dinner at Fisherman's Wharf. The sun finally appeared and our drive home on Thursday was rain-free. I'm glad I got to see Monterey and the beauty it has to offer... I hope Mark and I will be able to go back there sometime before we leave California.

Allyson had an appointment with Dr. Wright (hand surgeon) yesterday. The flexibility (up and down) of her pinky finger has improved and now Dr. Wright wants to focus on her side to side range of motion. She had a new splint made that will stretch Allyson's pinky outward from her ring finger while she sleeps. It seems a little bit painful for her at first, but I'm sure she'll adjust to it over time. Teetay joined me on the trip to CHLA and got to meet Dr. Wright for the first time. She's one of the kindest doctors and really takes the time to listen to us and explain things about Allyson's hands.

On Easter Sunday, we'll attend church in the morning and hopefully have an egg hunt on the patio in afternoon. We'll try to squeeze in a movie as well. Teetay and Geep head home on Monday and their week with us has flown by! We're all looking forward to seeing each other again at THEIR house in June. Those weeks will be full of activities, but tons of fun, I'm sure!

Please visit the evite for the 2nd Annual Rally for Ally and start thinking of ways you can help with raffle or silent auction items. The Rally (SARFA) link is the first one below. Forward the evite to as many friends as you think would like to attend and help us raise $10000 for the NFED this year! If you have questions or ideas, you can e-mail me at ca.kristin@verizon.net or Ashli at ashliagm@aol.com. Hope to see as many of you as possible at SARFA!

Lots of love and spring blessings to you all this holiday weekend!

Kristin

Tuesday, April 11, 2006 9:26 AM CDT

We're off to Monterey and are hopeful that we won't have TOO much rain on our mini-vacation. Even if the rain persists, I reminded Teetay of a song she used to sing to Ashli and me when we were little... "I don't care if the sun don't shine. We can have fun any ol' time!" No raindrops will DAMPEN our spirits!

Teetay and Geep arrived Sunday and we've been having a great time. Allyson has been showing off ALL her new tricks and entertaining us non-stop. Morgan is thrilled to have Teetay and Geep here to 'witness' her growth as well. They've both changed so much in just two months since their last visit! Morgan is more 'grown-up' and loves doting on her baby sister. She's such a great helper! Allyson's physical abilities have improve tremendously as well. Teetay and Geep have witnessed first hand WHY we call her "Alpine Ally" with her constant climbing on everything!

Happy Easter weekend ahead! Hope you're able to spend this blessed week with those you hold dear.

Love to you all!
Kristin

P.S. The link to the "SARFA" (2nd Annual Rally for Ally) evite is below. Please click on the link to see what Ashli, Tom, Peggy, and Mike are planning this year and pass the evite along to your friends and family who might be interested in attending/contributing! Thanks!

Saturday, April 8, 2006 9:31 AM CDT

Good morning everyone! Hope your weekend is off to a great start! We've got a busy week ahead, so let me get right to this update of what we've been doing and what we have planned...

Allyson has been doing very well with her therapy. She's comprehending almost everything she's told and is babbling more. She's not making many consanant sounds, but she'll imitate various "oohs, aahs, uuhs" and string multiple syllables together. It's almost like she's trying to talk in her own way! We've been working a lot on teaching Allyson how to safely "get down" from the furniture, tables, stairs, etc. that she so happily climbs. She understands "turn over on your tummy" and "get down backwards", but still needs a little physical direction to help her get into position. Yesterday, she attempted to stand up from a sitting in a chair without holding onto anything. Mark and I were behind her watching and she tried to stand on her own three or four times. Use those thigh muscles!

This week has also marked the transition to one nap a day. I think we've finally gotten on a regular schedule for Ally. (oops! I shouldn't say that out loud or I might jinx it!) She's been sleeping for 2 - 2 1/2 hours in the morning and is awake from midday until bedtime. Seems like a long stretch of awake time, but she's handling it well and sleeping well at night too. Yeah!

Morgan has had a good week at school. She's looking foward to her Easter party next Friday. Yesterday, she got a special stamp on her hand because she correctly read ALL the words (25 ) on the chalkboard. Her teacher was very proud of her and pulled me aside to say how well Morgan was doing with her reading. On a completely OTHER note, we were informed this week that there are a few cases of LICE in Morgan's classroom. I've been checking her head diligently and so far, so good. Let's hope she doesn't get that! UGH!

Wednesday's funeral for Lana was a wonderful celebration of her short life. The service and burial were uplifting in many ways. Although there was sadness about her physical passing, there was comfort knowing that she was at peace and in no pain and able to be healthy alongside God in Heaven. Allyson and I spent a lot of time with the family and got to know them better. We were invited to go out to a buffet lunch with everyone (about 30 people) and I picked Morgan up at school to join us. She was excited to see Johnny and kept telling EVERYONE that this was their "date." She sat with Johnny and his family at one table while Ally and I sat at another. She offered food off her plate to Johnny and held his hand when they went to the ice cream machine with his dad. It was cute to see them together (even though Johnny was being shy and Morgan was definitely the pursue-ER) and I think they had a good time! I'm glad we good spend the day with the Wooldridge family and offer them support during this time.

Today we have a full plate of activities! We're going to enjoy "Cottontail Day" at a local park - complete with an Easter egg hunt, crafts, food, and other activities. This afternoon Morgan is getting her haircut and then we're having dinner with friends tonight.

We're looking forward to Teetay and Geep's arrival tomorrow morning and will start our Easter week celebration with them. The five of us (Mark will have to work) are going to Monterey for a couple of days mid-week and have plans to enjoy the aquarium, children's museum and all the sites Monterey has to offer. Hopefully, we'll also get to see Rebecca (Ashli's former roommate) and her baby, Alina, who are driving down from Oakland to visit. It will be a full week for us and lots of fun, I'm sure!

Have a wonderful weekend and great week ahead!

Love,
Kristin

Tuesday, April 4, 2006 1:04 PM CDT

This is what happens when one parent goes out of town and leaves the other one in charge!

It's not what you think either... This was taken last night while MARK is out of town, not me. And the bottle is empty too.

More later... just had to share this one now!

Kristin


Hello again! Hope you're enjoying these drunken baby photos. Please don't call CPS on me!!!! Thanks for the head's up, Aims!

Well, I'm back from my winery weekend and had a fabulous time with the girls. We visited five wineries in the Santa Ynez valley including Firestone, made famous by a certain TV Bachelor, Andrew Firestone, about three years ago. Most of the girls on the trip had never been to this area before and some had never been wine tasting, so it was fun to be a "guide" of sorts. We had a great time after the wineries, enjoying dinner together, buying "provisions" for the hotel rooms and staying up WAY too late! I can't remember the last time I was up until 2:30 a.m.! Eee-gads!

I'm glad I was able to make the trip and spend some time with friends. Mark survived his 28-hours alone with the girls and wasn't too worse for wear when I got home. Luckily for him, he was headed to San Diego on Sunday afternoon to complete his swimming and water survival re-qualifications (required every 4 years). He's on his way back today and will hopefully be home before my class at the gym tonight. It feels like we've literally been "tag-team parents" for the past few days. Things should return to normal for the rest of this week. Phew! I'm ready for that.

Hope you all are having a good week and aren't experiencing the deluge of rain that we've been having. I have to keep telling myself that once this Spring rain stops, we won't see it again until October or November. Then the dry, sunny days will be plentiful in between. I can't wait... all this rain is depressing!

Tomorrow is Baby Lana's funeral. Allyson and I will pay our respects to the Wooldridge family and celebrate Lana's short life. I thought about taking Morgan to the funeral as well, but decided that my explanation about Lana's death my scare her or worry her with respect to Allyson and her "illnesses" and frequent hospital visits. I don't think she's quite old enough to understand all of it. I saw Mrs. Wooldridge yesterday and she told me she was doing "better" with everything. Her husband's family had arrived from out of town and she said that was helping. All of her immediate family members live in the Phillipines and are not able to fly here for the funeral. She does have aunts, uncles, and cousins here to support her though. I'm sure it will be a tough day tomorrow, so say an extra prayer for us all.

Have a good night...
Kristin

Thursday, March 30, 2006 11:10 AM CST

Hello everyone! I just got home from dropping Morgan off at school and saw Johnny's mom who had some news about Baby Lana. It's heartbreaking to tell you that Lana passed away last Friday morning. After having a week full of "ups" and "downs" (it was just a week ago that their mom said she was "doing better" and breathing more on her own...). By the end of the week, she took a turn for the worse and passed peacefully on her own. The family visited with her Thursday night and she was smiling and content, but the end was near and they said their good-byes to her. A few hours later, Lana joined God as one of his special angels. When talking to the mom this morning, she seemed relieved (and actually said she was) and less stressed than on previous occasions when we've spoken. It's still so tragic and sad, but I can understand the "relief" part... the constant worrying about "what will be" can eat you apart. Please continue to keep the Wooldridge family in your prayers as they greive and learn to move forward. There will be a funeral for Lana next Wednesday and I plan to attend and support this family.

Connie is taking care of Allyson today while I shop for some "winery" clothes. Mark returned from Lemoore yesterday afternoon and had fun playing with the girls and giving baths last night.

Happy birthday to Teetay on Friday! Can't wait to see you in 10 days!

Love you all!
Kristin

Tuesday, March 28, 2006 12:35 AM CST

Hello from a very RAINY California! Hope the weather is better wherever you all are today...

Mark is away in Lemoore for a few days getting some training for their upcoming work-up cycle and I'm fighting a cold and sore throat! The girls have been great and Morgan promised her daddy that she would "take care of me" so that I would feel better and could take care of Allyson. She can be so sweet sometimes!

The weekend birthday parties were a hit. Morgan had a great time being dropped off at the party on Saturday... I lingered around for about 45 minutes and she continuously "bugged" me to leave her and come back later. When I returned to pick her up, she and the birthday girl were playing dress-up and putting on a show for all the adults who remained. She and Alliah were precious together and danced around their living room while Alliah's older sister (8 years old) played the recorder. I wish I had a video of that!

Brenna's party on Sunday was great as well. Morgan played with the "big kids" on the jolly jump and Allyson was fascinated by the other babies (a 6-month and 7-month old) who were there. She's definitely not used to being the "big baby" and I had to hold her back from climbing on the little ones. Allyson definitely enjoyed herself as much as Morgan did!

We're free of appointments this week... just regular therapy sessions with Pablo and at the Therapy Unit. Allyson is perfecting her climbing techniques... she's not only going up the stairs, but up onto furniture and over the sides of couches and chairs (if I'd let her!). She's a constant bundle of energy and we have to watch her CLOSELY!

I'm going away for a girls' weekend on Saturday. Several of us are heading to the wineries of Santa Ynez to celebrate a friend's 30-10 birthday. We'll drive up to the wineries on Saturday morning, spend the night in Solvang, and come home Sunday. I'm really looking forward to this little getaway, and Mark is anxious to have the girls to himself for 24 hours. (ha ha!) I think it will be good for all of us, don't you?!?!

Hope you're having a great week. Ashli, I'm still looking for that green Patriots jacket for Allyson to wear this weekend... jacket or no jacket, we'll all be cheering for George Mason in the Final 4! Way to go, Mason, way to go!

Kristin

P.S. Thanks to everyone who voted for Morgan in the BabyZone photo contest. A little girl named Jocelyn won... she was the one smelling the flower. We'll try again another time and I'll let you know when your votes are needed! Thanks again!

Saturday, March 25, 2006 8:56 AM CST

Good morning! My thoughts are with the Wilburn family today as they celebrate the life of Jerry. I am "there in spirit" as I have such fond memories of the Wilburns and especially Jerry's zest for life! I celebrated my 21st birthday at one of the Wilburns' New Year's Eve parties... suffice it to say, that was a NIGHT TO REMEMBER! Thank you, Jerry, for bringing such joy into the lives of others.

As Teetay posted, I'm sure that Jerry is thrilled with (and maybe had a hand in?) George Mason's advancement into the "elite 8". What a great ride the Patriots are on! Good luck against UConn tomorrow. As they showed last night against Washington, maybe there's a chance for Mason's cinderella run to continue... Go Pats!

We've had a good week here. Morgan's doing great in school and her writing skills are really improving every day. She's still a little "stubborn" when it comes to reading at home, but we're letting her go at her own pace. Before I forget, I have a WONDERFUL update on Baby Lana (boyfriend Johnny's sister). I spoke with their mother earlier in the week and she told me that Lana was doing better. She's only requiring 50% oxygen now and is sitting up and smiling. It seems like her left lung is working well and getting stronger (her right lung was removed soon after her birth). I asked if she was still a transplant candidate and the mom said "no" and that she should be okay without the heart/lung transplant. Lana turned three months old last week and the family is hopeful that she'll be able to come home soon. Keep them in your prayers (they're working!) as this is definitely great news from a week before!

Allyson has done very well with her therapy sessions this week. She's eating better, sleeping better, and getting stronger with her left leg. We're helping her cruise around (both to the right and left) and now we're working on teaching her to climb down backwards off the furniture. The next step is tackling the stairs, since "Alpine Ally" only wants to come down head first! She's picked up another sign this week... "all done" which is addition to "more" and "eat". She gets so proud of herself when she signs "correctly."

Allyson also had her 15-month check-up and shots with Dr. Huang. She now weighs 23 lbs. and is 30 inches long. her weight is slightly above 50% and her height is slightly below 50%. Her head growth remained consistent with previous measure, so there are no concerns there. Dr. Huang is pleased with her overall health and progress. Hooray!

Connie took care of Allyson yesterday and Mark and I had a mini-date going out to lunch and shopping at thrift stores. We are going to a 70s/80s themed party next month and were searching for some "vintage duds" to wear. I found a great skirt a la Madonna or Cyndi Lauper of the early 80s. Now I need some lace gloves, mesh top, jelly bracelets, and high heels to complete my look! Mark is still narrowing down his choices of looks, but we had fun shopping together!

This weekend we have two birthday parties to attend. Today Morgan has a party for her classmate, Alliah. She went to Alliah's sister's party in February and had a fabulous time. I'm sure she'll enjoy today's festivites as well. Tomorrow afternoon, we're all going to a 2-year old's Elmo party. Brenna is the daughter of one of our squadron friends, so we'll get to hang out and celebrate with a lot of our close buddies. Morgan is excited about both parties and is busily deciding what to wear to each. Last night when she was going to bed, she reminded me that "we have a big weekend ahead and need to get a good night's sleep." She passed up a story and a song because she "was such a tired girl"!

Hope you're spending your weekend with those you love and doing things you like to do. Enjoy!

Kristin

Thursday, March 23, 2006 0:15 AM CST

Here's your EASTER preview... can anyone guess what we did this afternoon?!?!?!

Just a quick "teaser" post before I go to bed...

All is well here. I'll give a full update tomorrow when I can breathe better. Yes, my allergies have attacked me BIG TIME today and I'm either sneezing and "catching" my dripping nose or I'm completely stuffed up and can hardly breathe. Must be spring...

Here's our BIG NEWS of the week... I've copied this from an e-mail I sent to some friends a couple of days ago.

This is just a shameless request here to vote for Morgan in an online photo contest...if you're so inclined... Go to the link below (in the journal) and then vote for Morgan in the Preschool contest. You can vote everyday through the 26th, but only once a day and only one vote per computer/per day.

I took this picture (the "model shot" that I also posted on here) of her at a local park (Oxnard, CA) at the end of February and submitted it to BabyZone a couple of weeks ago. I have submitted photos of her and Allyson before, but this is the first time we made the cut and were chosen for the contest.

There's no big prize to win - just a chance to win the monthly contest and then the annual one.

Thanks for indulging this proud mommy in Morgan's "fifteen minutes of fame."


P.S. Please feel free to forward to any of your friends/family and ask or their vote as well. Thanks! :-)

Please copy and paste this in your browser:

http://www.babyzone.com/contest/photocontest.asp

to submit your daily vote. Scroll down to the "week 4" and click on the check mark associated with the "preschool photo contest." Morgan's picture will appear on the next page. Multiple votes in the same day will be discarded. Only one vote per computer per day.

Voting for this week's contest will end on Sunday, March 26th.

Good luck and happy voting!

Thanks a ton! Hope you're having a great week!

Kristin

Saturday, March 18, 2006 9:33 AM CST

We're back from Disneyland and California Adventure! We had a great time Thursday and Friday and got to DO just about everything we wanted to before the rain started falling around lunchtime yesterday! Morgan was thrilled to "show off" Disneyland to Grandma and Grandpa. They loved seeing how much it had changed since 20 years ago. The theme park, California Adventure, now stands where they remembered parking their car years ago.

After arriving and having lunch Thursday, we headed to CA Adventure and saw Morgan's favorite show, Disney Playhouse. We first saw this show featuring Bear and the Big Blue House, Stanley, and Pooh, with Aimee and Tyler three years ago. Morgan STILL remembers every detail and loves every minute of it... It was great seeing her sing and dance and having a ball! Allyson seemed to like the show as well, although she would have been happier crawling around over everyone instead of having to sit in my lap or arms or carpet beside me!

Morgan enjoyed several other rides in Bug Land (A Bug's Life theme) and all of us took a spin on the sea creatures carousel and the GIANT ferris wheel. Morgan and Allyson both loved going around and around AND being high in the sky!

We got an early start on Friday morning and were at the gates when they opened at 8 am! Our timing was perfect and we were able to ride Small World TWICE without a line, Grandma and Grandpa rode two roller coasters together. We visited Toon Town and rode many rides in Fantasyland AND petted goats and a cow at the petting zoo ranch... ALL this before lunch! Allyson went on several of the indoor rides with us and wasn't phased at all by the loud noises, dark rooms, and twists and turns. She stared straight ahead with little or no expression on her face. Too funny!The rain started falling while we were eating lunch, so we went shopping! (OF COURSE!) Morgan wanted to "go home" as soon as the raindrops started... she was afraid her Minnie dress would be ruined, but with a new stuffed animal in her hands, she "toughed it out" for a little while. We were planning to leave soon to "beat the traffic" (ha!), so we headed back to the car in the POURING rain... I had Morgan half-asleep in my arms during the 20 minute walk. Can you say aching biceps?!?!?

We got home around 4:30 pm and enjoyed dinner together last night. Mark finally got his traps on the boat yesterday and seemed rejunvenated from his first return to the carrier. We were happy to see him again after our whirlwind trip and hope to all return to Disneyland together sometime soon!

Grandma and Grandpa will be here through tomorrow evening before taking the red eye back to NC. We don't have anything BIG planned for the weekend. When I put Morgan to bed last night, she said, "I don't want to go anywhere tomorrow, I just want to stay home." Now that's a sign of a pooped petunia!

Hope you're having a great weekend wherever you are...Lots of love to you all!

Kristin

Thursday, March 16, 2006 8:32 AM CST

Hello! We're off to Disneyland today! Morgan is so excited and is busily decided WHICH Minnie Mouse stuffed animal she should take with her. We plan to leave here around 9 am (after rush hour) and arrive before lunch time. We'll visit CA Adventure today and Disneyland tomorrow. The rain is supposed to "stay away" until Friday night - let's hope th weather forecasters are right about that!

I received a raffle ticket update from the NFED yesterday. This was the BEST year ever for the NFED's raffle and over $32,000 was raised. The Clark family of PA sold 5625 tickets!!!! WOW, go Clarks! Now, WE have our goal for next year! The update said that six families sold more than 1000 tickets each (we would be one of those!). Thanks a million for being a part of this great event!

Morgan's ballet show yesterday was wonderful. She was a perfect ballerina and did all her steps as directed by Miss Pam. It was so cute to see her dance for us and she was so proud of herself. I've put pictures on the photos page. We'll resume ballet classes again in April. Morgan will "advance" to the next level (5-8 year olds) based of her skills and ability. Yeah, Morgan!

Happy belated birthday to Dani who turned 30-something yesterday! Hope you had a wonderful day, my friend!

Happy end of the week to all and Happy St. Patrick's Day tomorrow!

Kristin


Tuesday, March 14, 2006 7:22 PM CST

Greetings from another pseudo-rainy day here in "sunny" California!

WELCOME HOME Aunt Ashli and Uncle Tommy! So glad you're home and your trip sounds awesome! Can't wait to HEAR all the details and see pictures! We missed you!

We're having a great time with Grandma and Grandpa and have been bsy these past few days. They are really enjoying seeing all of Allyson's "tricks" and learning new things from Morgan...like her "lesson" last night that explained how junk food makes you fat and hurts your heart. She drew a heart on her chalkboard and then marked an "X" over it. Morgan told us, "THAT is what happens when you eat too much junk food." She was so serious about her health lesson! Then, she drew pictures of healthy foods (carrots, grapes, broccoli) ad we had to guess what they were. This went on for over a half hour! It was another precious Morgan moment!

Yesterday, Allyson had an appointment with Dr. Kay, her foor orthopedist. He took x-rays of both feet as well as her pelvis. Her hips are well aligned and her feet don't appear to have any bones fused together. However, her right foot has five bones and her left has four. That really doesn't mean anything other than confirming why her right foot is slightly wider than her left. We scheduled Ally's feet surgeries (both will be done at the same time) for August 22nd. Dr. Kay will remove the soft tissue in between her toes and "close" the cleft in each foot. He may also stitch the center bones in her foot together so that "spreading" in minimized later on. Dr. Kay also said that he did NOT anticipate Allyson needing any additional foot surgeries after this one. Woo-hoo! So, surgery #5 is on the books for later this summer.

Today, we visited the Ronald Reagan Presidential Library in Simi Valley (about 45 minutes from us.) The setting is beautiful and the museum is spectacular! The highlight was going aboard Air Force One (yes, a real one) that was used by Presidents Nixon through George W. Bush. It was decommissioned on Sept. 8, 2001. Grandma, Grandpa, and I all really enjoyed seeing the exhibits and Allyson was a trooper throughout (even without her nap!). I highly recommend a visit to the Library is you're ever in the area.

Tomorrow is Morgan's "BIG BALLET SHOW." She's selected her costume and everything is ready to go! She was also busy practicing after school today! We'll pick her up from school right after naptime and head to her class. Afterwards we'll go out to dinner for a special celebration. We asked Morgan to choose the restaurant and she chose Applebees! (Aren't you SHOCKED that it wasn't Chuck E. Cheese?!?!? WE WERE!) So, that's tomorrow's plan where Morgan's concerned. Allyson has TWO therapy sessions tomorrow... first, at the therapy center and later, with JanDee. She'll join Grandma, Grandpa, and I at Morgan's show. Unfortunately, Mark is scheduled to fly TWICE tomorrow (for a total of 11 hours flight time!) and won't be home until after midnight. Looks like he'll be racking up flight hours and traps on the boat tomorrow. Nothing like REALLY being back in the saddle...

Before I close, I have to share a tragic story with you all and ask for your prayers for Johnny's (the BOYFRIEND) family. I haven't mention this before (hoping for a miracle!), but Johnny also has a special baby sister... born almost exactly one year after Allyson. His sister, Lana, was born with severe health issues affecting both her lung and heart. One lung was removed shortly after her birth with the hope of relieving the pressure on her heart, but the remaining lung and heart are failing too. She in on a list for a heart and lung transplant, but even IF a match is found "in time", Lana's prognosis is not good. I don't have many details... only what I have learned during brief (and occasional) conversations with Johnny's mom when we're dropping the kids off at school in the morning. Today she told me they were meeting with Lana's doctors to discuss her condition. She is currently being kept alive with a ventilator. I was told this morning that they were going to consider taking her off the machines after their conference with the doctors. I can't even imagine having to make such a decision. Lana's quality of life is their biggest concern, but what a choice... She's spent her entire life (almost three months now) in the hospital with no hope of ever coming home. Anyway, please keep the Wooldridge family in your prayers, and especially Baby Lana, as they face these challenges. I'll let you know when I have any more news.

I'll end with another thank you for all of your support. You don't have to look very far to know how fortunate we all are... even in the face of daily challenges... Hearing the Wooldridge's story puts the little things in perspective.

Love,
Kristin

Saturday, March 11, 2006 4:32 PM CDT

Here's a picture taken this afternoon of Allyson's FIRST cruising injury! She's got quite a scrape on her nose (took the skin right off and also caused her nose to bleed inside). This happened right at the end of Connie's "shift" yesterday. I had just arrived home with Morgan and jumped in the shower quickly before Connie left. I heard Allyson's wails upstairs and Morgan's efforts to comfort her. As the ever-sensitive-big-sister, Morgan was more upset about Allyson's "boo-boo" than Ally was. She's fine and continues to cruise around from place to place.

We saw Dr. Reinisch this morning and he said that Allyson's palate was healing well. She still has stitches that have yet to dissolve... He explained that this was because she does not eat 100y mouth. It will just take longer for her stitches to dissolve because of a "lack of activity", so to speak. Unfortunately, he could not offer us any advice with her feeding issues. He said to rely on our Occupational Therapist (JanDee), as she is the expert in this area! So a' tryin' we will do!

We got pretty excited when Dr. Reinisch said that we didn't need to see him again until our next craniofacial team appointment which will be scheduled for October. I was thinking back to this time last year (a year ago this was the weekend before Allyson was hospitalized for two weeks for "failure to thrive")... Last March, we were just 6 weeks into the NAM process and making "at least" weekly trips to either Plastic Surgery or the Orthodontist/Dentist. Now, we won't go back to CHLA for cleft-related appointments for seven months. It's a clear indication of how far WE (and especially that smiling girl on this page) have come! Thanks, as always, for being on this journey with us!

Grandma and Grandpa Kelso are nor enroute to our house. Morgan is so excited and even cleaned up her room (without too much complaining!) so that everything would "be ready" for their arrival. We're looking forward to a fun (and hopefully DRY) week with them. The rain has stopped for now... oh, and did I mention the HAIL we drove through on the way home from LA this morning?!?!? We got a message that it was 84 degrees in NC today... I hope the mid-60s won't be too cold for anybody!

Happy Spring weekend wherever you may be!

Kristin


Friday, March 10, 2006 9:00 AM CST

Good morning! Yesterday was the NFED drawing... I'm guessing that none of the 2280 tickets we sold was a winner. If any of you receieved that phone call, please post and tell us about it!

Allyson's news flash of the week....

She's CRUISING!!!! That's right... she'll stand up and move herself around a table or chair... side-stepping to the right! Now, we have to work on that left leg. However, it's not unusual for children to prefer one direction to the other. The next step is WALKING - woohoo! Let's hope that she'll be toddling down the beach this summer!

Grandma and Grandpa Kelso arrive tomorrow night. They're going to see such a change in little Miss Ally since Christmas. She's SO FAST with her crawl (and can almost keep up with Morgan!) and she goes up the stairs and she stands and cruises and she laughs out loud a lot... and she laughs in your face when she's scolded. Her "bad" habits are turning on/off the tv, turning on/off the computer, playing with the remote controls, and closing the door to the bathroom and sitting by the door so that no one can open it. She's quite the troublemaker... and when you tell her "no", she smiles and laughs and does the "bad deed" again! When we smack her hand, she laughs even more! It's hard to maintain "mommy composure" during these moments.

Morgan has now tried to help us discipline Allyson. She's given her a "speech" the past two nights telling her, "I to have a talk with you, Allyson. If you don't behave and do what Mommy and Daddy say, you're not going to go to Disneyland. And Grandma and Grandpa are coming to visit us and it's their first time to go to Disneyland and you don't want to make everyone unhappy." (Can you tell that Morgan is reciting a similar "speech" that she's been told?!?!?) Morgan is THRILLED that she can "boss" someone around. Of course, Allyson has no clue as to what she's saying and just laughs and smiles while Morgan is "disciplining." She goes on and on and on... Mark and just try to sit there and keep a serious look on our faces! It's difficult! :-)

Anyway, hope you had a good week. The appointment with Dr. See on Monday went well. She's increased Allyson's motility and reflux medication with the hope that it will help her "feel" like eating her baby food. She has done better this week, so we'll keep on trying! Tomorrow we'll see Dr. Reinisch (plastic surgeon) and see if he can offer any assistance.

I'm having lunch with friends today and Connie, Allyson's nurse, will be here. We have a squadron farewell to attend tonight - hopefully the weather will be good (we've had rain and wind on and off all week!) and the whole family will be able to go.

Have a great weekend! I'll update next week after Grandma and Grandpa are here.

Kristin

Sunday, March 5, 2006 6:06 PM CST

2280!!!!! 2280!!!!! 2280!!!!! 2280!!!!! 2280!!!!! 2280!!!!! 2280!!!!! 2280!!!!!

That's our final raffle ticket sales total. Way to go, everyone! Special thank yous to Teetay, Grandma K., Aunt Ashli, Aunt Merideth, and "Uncle" Josh who took it upon themselves to sell tickets to their circle of friends. We appreciate ALL of your support! Thank you, one and all, who purchased tickets... whether 1 ticket or 100 tickets, your donation will help the NFED!

I'll let you know as soon as I hear if WE were the top sellers or not. 2280 is a pretty good number to beat!

As Teetay posted, we have our flights booked to Las Vegas for the AboutFace/North American Craniofacial Family Conference or NACFC (the parent organization of cleftAdvocate) and then on to St. Louis for the NFED's annual conference. These conferences both take place at the end of July and we're thrilled to be attending BOTH of them.

We've had a good week here... Allyson saw Dr. Huang and got her third and final RSV shot on Wednesday. At the Therapy Center on Thursday, she climb up the "regular" flight of stairs (about 5 steps) and also "walked" while pushing a large ball. Allyson is pulling up to stand on her own all the time now, however, she's leading with her right leg consistently and her left is noticably weaker. We're working on teaching her to use both legs with equal success. And, no, she still hasn't figured out to sit down after standing yet!

At home, Allyson has learned how to get down from the one step that goes up from our entry way. Unfortunately, she's doing it "hands first", so our challenge is teaching her to climb down backwards! Needless to say, she doesn't like being redirected like that! Hmmm, I wonder where she got THAT stubbornness from?!?!? The FINAL accomplishment of the week occurred yesterday. Morgan and I were upstairs and Allyson heard our voices and climbed ALL the way up the stairs! I called to Mark (who was downstairs) and he stood in for "back up" in case Allyson toppled down, but she had no problem and was VERY pleased with herself. Of course, then she wanted to go down HEAD first! AAAARRRRRGGGGGHHHHHH!!!! Morgan thought it was very cool and cheered Ally on as she climbed her way up! It was great to see her so proud of her little sister.

We had a relaxing weekend at home - household chores, paying bills, etc... all that fun stuff! Morgan helped wash the cars and fold laundry (in between her hours of coloring!). Allyson took a ride in her little car (pictures posted) and watched Morgan and I play on the patio this afternoon. It was nice just being together and not having anything that we HAD to do!

We're looking forward to Grandma and Grandpa Kelso's arrival next Saturday. We have a fun week planned which will end with a two-day trip to Disneyland and CA Adventure! When I told Morgan that Grandma and Grandpa had not been to Disneyland since her daddy was a little boy, she was shocked! I know she must think that EVERYONE goes to Disneyland at least twice a year like we do! :-) hee hee

Allyson has an appointment with Dr. See tomorrow. I'm hoping that she'll offer some guidance about Allyson's feeding regimen. While she's taking some baby food by mouth, her performance is inconsistent. I need Dr. See to tell me how we make her hungry (so she'll eat) without sacrificing her nutritional and hydration needs via the g-tube. If anything major occurs, I'll post about it. Next Saturday morning, we'll travel to CHLA for a follow-up with Dr. Reinisch. This is her six-week post-op appointment and the first time he will examine her palate since her surgery. I'm anxious for his input on how she's healing and if he has any advice on the oral feeding issue.

I'm off to watch some of the Oscars. Although I "sort of" care about who wins or loses, I'm more anxious to see Jon Stewart's performance as host this year. He's such a funny guy -I hope that translates over to the 'big show' tonight!

Hope you all had a great weekend! Thank you again for the tremendous support with purchasing raffle tickets and helping us FAR EXCEED our fundraising goals!

Love,
Kristin

Wednesday, March 1, 2006 0:04 AM CST

Is that just the cutest butt you ever saw?!?!?!

I had a few requests to take a photo of Allyson's legs and feet while she's standing. I got this shot mid-diaper change this afternoon. Ally is quite the squirmer when it comes to getting changed or getting dressed or "contained" for very long. This turned out so cute that I had to share!

Let me catch you up on the latest news here...

Our weekend was good. The girls and I saw "Doogal" and I was proud of how well I kept Allyson entertained during the movie. At 14 months, sitting still in one place is not her forte', but my creative distraction methods kept her from melting down while Morgan enjoyed the film.

We all went to the park and had a picnic on Sunday. Allyson went down the small slide by herself (no Mommy hands for stabilization) for the first time. She sat at the bottom when the "slide" was over and then tried to climb back up the slide to go again. Even though she was slipping, she continued to try!

On Monday, we were homebound due to very heavy rains. Allyson added another "first" to her list of accomplishments. While I was taking laundry upstairs, she managed to climb up two steps on our flight of stairs! She was saying "mama" and of course, I was shocked when I saw where she was! That was the last day I could leave her unattended without the baby gates up - wow!

Today we had an appointment with Dr. Wright to check her left hand. Everything looks good and she's healing well. We had another splint made for Allyson to wear at night. She was slipping out of the old one every night. The new splint really isolates her separated fingers and keeps them separate while stretching them out at the same time. I'm always amazed at how creative the OTs have to be to make such a thing based on the doctor's wishes.

Tomorrow is Mark's BIG day... He's scheduled to fly in the afternoon and get requalified in the E-2C. He brought home a copy of the flight schedule with his name on it! I felt like I should hang it on the refrigerator with Morgan's school work - he was so proud of his name! Anyway, it's a great day for him and even though he said he's "not as excited as I thought I'd be"... I'm sure the "rush" will return as soon as he's getting airborne tomorrow. Our prayers were answered. God is good.

Glad that Ash and TG are safely in Africa. I'm so happy that Ashli's lifelong dream has come true. I was so surprised to see her guestbook entry today! Now, I hope that she won't post again - she's officially banned for the next two weeks. Here's my sisterly advice... GET OFF THE INTERNET AND GO AND ENJOY YOUR HONEYMOON ALREADY!!!!!

Happy March! And if anyone still wants raffle tickets, I need your money by FRIDAY, March 3rd. Thank you! We're almost up to 2000 tickets sold - I appreciate everyone's support!

Love,
Kristin

Friday, February 24, 2006 1:48 PM CST

Hello and Happy Friday! Hope your day is as sunny as our is!

Here are a few "Morganisms" of the week:

1. Morgan was telling me a story the other night while she was taking a bath. It's a fairytale that is probably familiar to you all. Morgan PERFECTLY recited the story of the two children (a boy and a girl) who wander through the woods dropping bread crumbs. They come upon a gingerbread house covered in candy and decide to go in. Yes, this is the story of... in Morgan's words....
"HANDSOME and GRIDDLE." How could I keep a straight face as she continues to tell me the story and calls them by these "new" names? Priceless!

2. At Morgan's ballet class on Wednesday, I reminded her to be quiet and listen to Teacher Pam. (She had be reprimanded at the previous class for talking too much.) Morgan smiled and said, "Okay, Mama. I'm going to 'zip it' (her mouth) and 'lock it' and 'put it (the key) in my pocket.' And THIS time, the lock isn't going to break during class like last time." And, she stuck by her promise and got an extra sticker this week for being quiet!

3. This was told to me by Johnny's dad... Yesterday at school, Morgan apparently kissed another boy named Jourdan who was upset because he wasn't allowed to go outside and play during recess. Johnny (the boyfriend) observed this kiss and promptly pulled Jourdan's chair out from under him. Morgan (unsure of which boy is her TRUE love) pulled Johnny's arm because he had hurt Jourdan. Do I see a love triangle brewing here?!?!

Just had to share those cute Morganisms from this week... now onto Allyson's update.

We've had a pretty good week. Allyson had a nurse on Tuesday, so I was able to work on raffle ticket stuff and get my nails done. Pablo was here Monday and Wednesday and Allyson is now pulling up to stand without any support from us. She loves to stand up at her "computer" table. Unfortunately, she doesn't know how to "plop down" when she's tired, so she cries and one of us pushes her back onto her bottom. Hopefully, she'll get the hang of that soon! Yesterday, we had a check-up with her ENT at CHLA. Her ear tubes look good and are still in place. We also attempted to do a hearing test (standard for kids with ear tubes 12-18 months old). Allyson did well on the test when hearing a voice, but she got confused during the "beeps" and looked for the "response" before the sound was given. Anyway, the audiologist said that Allyson wasn't quite ready for the test developmentally and we rescheduled for August. She said that she didn't think Allyson had any hearing loss and felt comfortable waiting to get a "good test" later this summer. Today, we went to the Therapy Center and made up the sessions we missed yesterday. Allyson crawled up the "short steps" for the second week in a row. She also mastered the padded ramps - both up and down and stood unassisted for a long time.

We don't have a lot planned for the weekend. Morgan wants to see a new movie, "Doogal", so the girls and I might tackle that tomorrow. Since we're all feeling well again, we might take a trip to the park and enjoy some sunny California weather!

Hope your weekend is great! Raffle ticket sales end next week! Contact me ASAP if you're still interested in purchasing tickets!

Kristin

Sunday, February 19, 2006 9:35 AM CST

Good morning, everybody! Hope you're staying warm wherever you are on this Sunday morning. We've had our share of chilly temps too... although not the -25 degrees that Aimee, the birthday girl, has experienced... Our highs have been in the mid 50s over the past few days with showers on and off! That's about as "bad" as our weather gets - yuck!

I'm happy to say that both Morgan and Allyson have been WELL for the latter part of the week. Mark and I continue to "suffer" from occasional cold symptoms and achiness, but it's nothing major. Allyson has been a little congested on and off, but that doesn't seem to be dragging her down! She's been full of smiles and energy. She's taking her baby food much better and she's really been interested in her sippy cup! It's so neat to watch her get so excited when I show her the cup.

During her therapy sessions this week, Allyson mastered an "obstacle" course that Pablo and I set up for her. We made her crawl through a nylon tunnel over pillows. She was really having to work hard to climb up and down to get to the end. Very cute! At the therapy center on Thursday, Allyson crawled up a flight on stairs. Granted, they're "half steps", but she made it all the way up (about 8 steps) without too much difficulty. Each time she reached the top, she raised her arms in the air... as if to say "look at me! I did it!" Of course, she was rewarded with lots of cheers and applause!

We don't have much planned for this weekend. The weather kept us indoors yesterday. Mark and the girls were at home for most of the day while I enjoyed some scrapbooking time with my friends. I'm almost "caught up" on Allyson's book and I feel pretty good about that! It was great to have some "fun Mommy time"!

Tomorrow we have tentative plans to get together with Parker and Ian - our neighborhood friends. When I spoke with Adrienne last week, we thought we might enjoy a day of swimming in their pool... however, I think mother nature will alter those plans! I'll let you know if Morgan and Parker have a date and how it goes! Don't tell Johnny!!!

Hope your long weekend is a good one. Happy Birthday TODAY to Aimee! And Happy Birthday weekend to the Philly gang who surprised Tom Sr. (Ashli's father-in-law) with a party last night. Hope Ash, TG, Teetay, and Geep had a great time there!

Thanks again for everyone's support with raffle ticket purchases. I've now sold over 1200 tickets, but have plenty more to send out. Please contact me at ca.kristin@verizon.net if you'd like to purchase tickets or mail me a check (made out to the NFED) to 613 Pacific Cove Drive; Port Hueneme, CA 93041. Include your name, address, and telephone number with the check. Tickets will be sold until March 1st, so there's plenty of time to get yours! Thanks a million!

Kristin

Tuesday, February 14, 2006 10:01 AM CST

Happy Valentine's Day and Happy Anniversary to Teetay and Geep! Hope everyone is having a great day filled with lots of LOVE!

I'm getting to spend my Valentine's Day with my two favorite girls. Yep, no party for Morgan at school... she's home with Allyson's stomach bug! She threw up last night before bed time and had a "silly stomach" (her word for nausea) throughout the night. Morgan and I had a slumber party downstairs. She slept on her Princess sleeping bag and I slept on the floor. (Guess whose back is in GREAT shape this morning?!?!? ha ha!) We watched "Finding Nemo" until after 10pm when she felt "okay" enough to go to sleep. Fortunately, she slept soundly and hasn't gotten sick anymore, but doesn't feel well enough to go to school. I'm surprised that she's not upset about missing her Valentine's party - that's the biggest indication that she's NOT well still. Hopefully, this is just a 24-hour thing and not a week-long illness like Allyson had. Now, pray that Mark and I don't get "it" next!

The good news is that Allyson is doing MUCH better as of yesterday, however, the weekend was pretty rough. She took a turn for the worse Friday night and we contemplated taking her to the ER to get an IV because she couldn't even keep down Pedialyte! We paged Dr. Huang late Friday and he suggested giving her another anti-nausea suppository and then trying Pedialyte at a very low rate through her g-tube. It worked... and we avoided having to go to the ER. Allyson stayed on 100edialyte all weekend (and a suppository every 4-6 hours) and then started tolerating her formula Sunday night. She hasn't thrown up since we resumed her feedings yesterday, but we're still giving it to her at a low rate. She's hydrated, but hungry... We'll slowly ease back up to her regular regimen over the next few days.

So, that's the latest on us! Raffle ticket sales are great... Teetay and I have sold 1100 between the two of us. Ashli is working on her 300. Uncle Josh has sold 200. Grandma and Grandpa Kelso are working on their NC friends. If you're still interesting in purchasing tickets, you may contact me at ca.kristin@verizon.net and mail a check to 613 Pacific Cove Dr. Port Hueneme, CA 93041. Please include your name, address, and phone number with your check or in e-mail. My original goal was 500 tickets, and it looks like we might sell closer to 2000! WOW! You guys ROCK!

Happy Valentine's Day to you all! And again, Happy 35th Anniversary to my wonderful parents! Love you lots!

Kristin

Friday, February 10, 2006 11:57 AM CST

Happy Birthday to you, Happy Birthday to you, Happy Birthday dear GEEP, Happy Birthday to you!

Yesterday was the beginning of Geep's birthday celebration with dinner "compliments" of me last night... I bought the liver and onions - I did not cook that! YUCK! Morgan and Allyson helped Geep open his presents and we exchanged our family Valentine's as well. Today is the "real" celebration with lunch at Chuck E. Cheese and seeing "Curious George" at the movies. Can you guess who planned THIS day?!?!? I have a couple of appointments this afternoon and a squadron meeting to attend tonight, so I won't be a part of today's festivities, but I know that Geep, Teetay, and Morgan will have a ball. Mark is due home later today as well, so he'll get to help wrap-up this two-day celebration tonight.

Allyson has had a few rough days and nights, but she's on the mend now. On Tuesday, she started throwing up during her feedings and ran a low-grade fever. After consulting her plastic surgeon, we ruled out any complications from her palate repair and I took her to see Dr. Huang, her pediatrician. Her lungs sounded clear, but there was a lot of congestion in her head and lungs. He put her on Zithromax as a precaution and to prevent any bacterial infection from forming. We're not sure why her stomach has been upset... it could just be adjustments from the anesthesia, pain meds, antibiotics, regular meds that she always takes, etc. Just thinking about all that "stuff" going into her stomach is enough to make me feel like throwing up! Anyway, the vomitting has subsided (as has her fever) and we've been successful at alternating pedialyte and formula - both at a slower than normal rate. Allyson slept "the best" last night of any night since last Thursday, so we were all greatful for that! She has still been pretty active and happy during the day and she's actually done better taking her baby food! So, we're taking things slowly and hoping she'll be fully recovered from this bout with tummy troubles by the end of the weekend... Keep those positive vibes coming our way!

FUNDRAISING UPDATE....

NFED raffle ticket sales are strong, but we can do better!!! Between the three of us, Ashli, Teetay and I have 1300 tickets to sell. We've sold almost 1000 already, but we need your help to sell them all! Thank you to everyone who has already contacted one of us and have sent your money for tickets. Please e-mail me at ca.kristin@verizon.net if you'd like to purchase tickets. You can mail a check to me (made out to the "NFED") at 613 Pacific Cove Drive; Port Hueneme, CA 93041. Please include your address and phone number with your check (or in your e-mail to me). The NFED will be contacting the winners by phone after the drawing at noon CST on March 9, 2006. All ticket stubs and checks must be turned in by Monday, March 6th. So, we have a month to go!!!! Just a reminder... the tickets are $1 each and the grand prize is $1000 cash; second is $300; third is $200. All of the money raised goes towards continuing the NFED's research, education, and support of families with persons affected with ectodermal dysplasia. Over 200 families were helped last year with medical costs, dental implants, cooling vests, wigs, etc. The bottom line... YOU CAN HELP TOO!

We've had a wonderful time having Teetay and Geep here. Tomorrow they'll head back to a snowstorm in northern Virginia. They've been a tremendous help to me, especially with Mark being on "the boat" this week. Morgan has loved every minute of their attention and Allyson has learned new things with their help. Can't wait to see Teetay and Geep again in the Spring (although this "winter" trip of theirs has felt more like "summer" with 80 degrees every day this week!). We love you and we'll see you soon!

Have a great weekend and Happy Birthday again to 60-something Geep!

Kristin

Tuesday, February 7, 2006 9:25 AM CST

"WHO ME?!?!?" says Ally surrounded by her plethora of toys...

Good morning! Check out Ashli's entry in the guestbook for info on the Second Annual Rally for Ally (SARFA). Save the date of June 24, 2006 for this terrific fundraising event! I'll be there with Morgan and the guest of honor, Allyson, this year! Hope to see lots of returning attendees as well as new faces this year. Ashli has set a goal of raising $10,000!!! We can do it!

Speaking of fundraising for the NFED... ticket sales are strong, but we can do better!!! Between the three of us, Ashli, Teetay and I have 1300 tickets to sell. We've sold almost half already, but we need your help to sell them all! Thank you to everyone who has already contacted one of us and have sent your money for tickets. Please e-mail me at ca.kristin@verizon.net if you'd like to purchase tickets. You can mail a check to me (made out to the "NFED") at 613 Pacific Cove Drive; Port Hueneme, CA 93041. Please include your address and phone number with your check (or in your e-mail to me). The NFED will be contacting the winners by phone after the drawing at noon CST on March 9, 2006. All ticket stubs and checks must be turned in by Monday, March 6th. So, we have a month to go!!!! Just a reminder... the tickets are $1 each and the grand prize is $1000 cash; second is $300; third is $200. All of the money raised goes towards continuing the NFED's research, education, and support of families with persons affected with ectodermal dysplasia. Over 200 families were helped last year with medical costs, dental implants, cooling vests, wigs, etc. The bottom line... YOU CAN HELP TOO!

Now, for the Allyson update... She continues to have GREAT days full of normal play, naps, smiles, babbling. Her nights haven't been so great... lots of restlessness and crying out at night. Teetay has been the "main rocker" with me as a back up as we try to get Allyson to settle down and back to sleep several time nightly. We don't think she's in pain from her surgery - maybe stomach discomfort since we've transitioned from formula to "Resource Just for Kids" (like Pediasure). The nights haven't been terrible - just perplexing as we try to figure out what Allyson needs.

We had a great weekend. Morgan had a fabulous time (and at a "to die for" house!) at the birthday party on Saturday afternoon. Teetay and I dropped her off and then had lunch on our own and ran a few errands. Superbowl Sunday kicked off with Teetay, Morgan, and I seeing "Hoodwinked" at the movies. It was very clever and we all enjoyed it! Allyson hung out with Geep while he prepped our chicken corn chowder, jalapeno stuffed shrimp, and other assorted munchies. We sampled wings from two places and they were both terrfic! Since no one in our house was particularly in favor of either team winning, we watched the game sporadically and tuned into the commercials. Teetay and I got hand cramps from filling out so many raffle ticket stubs!

Morgan is back at school this week and was so excited to see her "boyfriend", Johnny. When Teetay picked her up yesterday, Johnny's dad was picking him up at the same time. After Morgan was strapped in her carseat and drinking her juice box, Johnny brought his dad over to the car. When Johnny arrived at our car, he said to his dad, "I just want to look at her. See Dad. Look at Morgan. I just want to see her again." How precious is that?!?!?

Tomorrow we resume Allyson's therapy with Pablo and JanDee. I'm sure feeding will be a focus of our session. Allyson still isn't very accepting of her baby food, but we're still trying each day. I'm sure she'll be excited to see them again!

Hope your week is off to a great start!

Kristin

Friday, February 3, 2006 12:48 AM CST

What can I say?!?!? Everything is great... Allyson seems to be back to her spunky little self. She truly is amazing!

We've resumed her normal feeding schedule as of this morning. Allyson slept pretty well last night. She cried out just a couple of times and needed "repositioning." Around 3:00 a.m., she had her only "real awakening" of the night. I gave her some Motrin and Teetay "untangled" her from her feeding tube. I think all the wiggling around woke her more than being in pain. She slept soundly until 9:15 this morning when I had to wake her up so she could start her first full day at home! Allyson spent the morning playing with her toys. I attempted another baby food feeding (we tried last night as well) and Allyson somewhat "accepted" her peas with rice. Her tongue is still swollen and filling up her mouth which is making it a challenge to move her food around and swallow it... not to mention how "weird" her palate must feel now! Anyway, we'll continue to offer baby food and the sippy cup at Allyson's own pace.

Teetay had the honor of taking Morgan to her ballet class this morning (this is a make-up class since she missed her regular class Wed. afternoon). She gets to play hooky from school one more day and then it's back to Pre-K "paperwork" on Monday! Tomorrow, I'm taking her to a birthday party for the sister of one of her classmates. She'll probably get to reunite with some of her school friends there. She asked me last night if I thought that Johnny (her school "boyfriend") missed her. I assured her that he did and then she proceeded to send him a pretend e-mail on her Barbie laptop computer. It was hysterical listening to her "read" the response he sent back... it was something about her being "his little princess darling and wanting to be with her forever." I thought Mark was going to fall out of his chair! We were trying not to laugh (because she was VERY serious about this imaginary e-mail exchange), but it was just so hysterical!

Mark's at work today and hopefully completing the last phase of his physical before getting his "up chit" to fly again. He's also preparing to go out on the carrier on Sunday for a week-long flight deck exercise/training. He won't be flying this time, but will serve as the squadron's "officer in charge" during the week. I know he's looking forward to being back on the "boat" as he affectionately calls the giant ship!

Geep is out and about this afternoon... on a mission to find the best Buffalo wings in Ventura County that might be worthy of consumption at our three-person Superbowl party on Sunday. He's scoped out a couple of sites and will return later with the results of his wings survey.

Thank you for keeping us in your prayers this week. Allyson is recovering beautifully and we're thankful for that. Take care and have a great weekend!

Love,
Kristin

Thursday, February 2, 2006 1:00 PM EST

THEY ARE ON THEIR WAY HOME... HOORAY!

Guess who's really OUT and on her way home?!!? Yup, Miss Ally said "I am doing just fine so let me outta here, doctors!" Ally was released this morning and already en route home with Mommy & Daddy, with Teetay, Geep and Morgan right behind them (they had to drag Morgan off the CHLA playground, I think!). Allyson greeted everyone with a smile this morning and only seems a little fussy and frustrated when she coughs. We'll continue to hope and pray for a smooth recovery once they are home. I am sure new pics will be posted but because there's NO PEEKING, I would not expect to see any pics of the interior of the little Pal's mouth! :P

As for the slumber party with Mommy, Kristin said she DID manage to get a little sleep and sounded great when we chatted a while ago.

Thank you for your prayers, good thoughts and extra doses of support these past few days. We feel your love and we are GRATEFUL.

Happy almost Friday and have a wonderful weekend -- are you enjoying spring-like temps like we are in DC?!? :)

Love and thanks,
Aunt Ashli

Wednesday, February 1, 2006 4:20 PM EST

SHE'S OOOOOUUUUTTT! HOORAY!

Ally is resting cozy (thanks to great meds ;) at CHLA and was out of surgery around 12:15 PST. She was able to get started a little early with her anesthesia and she was in and under just before 10 AM PST. I spoke with Mark and Geep a while ago and all went well with her palate repair. Not too many details to share other than it's "done"! There is less swelling (lip area mostly) than expected and Ally will have some bleeding in the next few days, but all to be expected. I am sure we'll have more details to share an update in the coming days once they are all back home.

Teetay, Geep and Morgan spent the day at CHLA waiting and playing, and as of the time I talked with the gang, everyone (adults!) had seen Ally post-surgery. She is pretty tanked up on morphine and now awaiting her own room for her slumber party with her Mommy at CHLA. Everyone else will stay the night in a nearby hotel, and they will be discharged at some time tomorrow. So again... ALLY DID IT! YOU GO GIRL! And Thank God for the blessing and care of such amazing and skilled doctors/staff at CHLA!!

Again and again, the Matus and Kelso and George familes THANK YOU for your support and love that never wavers; and your belief in Allyson, Kristin, Mark and Morgan, as they continue to live life's journey to its fullest, regardless of the obstacles, and teach us everyday that loving one another and BELIEVING in each other is the greatest lesson of all. We are blessed to have you in our lives as we feel your strength and love. In case you ever wondered, YES, every single guestbook entry is seen and read, time and time again. THANK YOU.

" If there is any responsibility in the cycle of life it must be that one generation owes to the next that strength by which it can come to face ultimate concerns in its own way."
-- Erik Erikson

Love,
Aunt Ashli


Tuesday, January 31, 2006 12:43 AM CST

We're off to the hospital! This afternoon we'll complete all of Allyson's admitting paperwork and see the Surgery Admitting docs for "clearance" for tomorrow's surgery.

Teetay and Geep arrived safely last evening. Morgan and Allyson were full of smiles when they arrived!

Thank you for all the prayers for Allyson as she undergoes her palate surgery tomorrow. We're expecting to be "first" on the list, but won't know for sure until this afternoon. We think her surgery will last a couple of hours. Ashli or Geep will update as soon as there's "info" to report.

We've gotten a great response for raffle tickets - thank you to everyone who has e-mailed me and expressed interest. I've requested 500 more to sell from the NFED. Anyone who's interested can send me a check made out to the "NFED" for the number of tickets you'd like. Please include your phone number with your ticket request. The NFED needs the phone numbers to contact the winning ticket holders. I'll mail the tickets to you in exchange for your check. Tickets are $1 each and the grand prize is $1000 cash! The drawing will take place on March 9th.

Love to you all!
Kristin

Address:
613 Pacific Cove Drive
Port Hueneme, CA 93041

Sunday, January 29, 2006 1:23 PM CST

Thanks for posting that NFED info, Teetay. You're two steps ahead of me... as usual! :-) Since you can read Teetay's "blurb" about the NFED in the guestbook, I'll proceed with my info...

I'll take this opportunity to add that I/we/Allyson am/are/is selling raffle tickets to raise money for the NFED during Ectodermal Dysplasia Awareness Month. You can help too!

For just $1 per ticket, you could have a chance at winning the grand prize of $1000 CASH! Second and third place cash prizes are $300 and $200. If you're interested in purchasing tickets, e-mail me at ca.kristin@verizon.net
and we'll arrange payment and delivery. The drawing will take place on March 9, 2006.

The family that sells the most tickets receives a voucher to attend one of the national family conferences. Wouldn't it be great if we were the BIG winners?!!? The NFED has challenged each family to sell 25 tickets, however, I'm sure we can sell 10 times that many! Thanks, in advance, for your help!

Yes, we're still flying high from Mark's good news last week as we head into Allyson's palate surgery on Wednesday. She had a good pre-op appointment with Dr. Reinisch and Dr. T yesterday. It looks like she will stay one night in the hospital and we'll plan to come home on Thursday afternoon. Tomorrow, Allyson has a check-up with Dr. Huang and will receive her monthly RSV shot. This should help insure "healthiness" both before and after her surgery.

Thank you for your continued prayers as Allyson has her fourth surgery on February 1st! We love you all and appreciate your ongoing support!

Kristin

Thursday, January 26, 2006 4:59 PM CST

Hello! A quick update between Change of Command activities... the ceremony earlier today and the "beach party" tonight... there will be A LOT to celebrate!

As Mark posted, he passed the CogScreen tests in Pensacola. His overall "score" improved from .5196 to .0229 (the lower the score, the better.) He had "gains" in 10 areas and "no losses." Today, Dr. Porter presented Mark's case to the Code 42 board. Here's the response he received back via e-mail just an hour ago...

"I discussed your case at the Code 42 staff meeting today. I told them that if [when] they received an AMS requesting a waiver for you, I would support that request. I had no resistance. Tell your Flight Surgeon to send an AMS to Code 42 requesting a waiver for you."

It's kind of "cryptic", but we're interpretting this to mean that as soon as the board receives the written request from Mark's flight surgeon locally, they will approve it because Dr. Porter (the big-wig, guru or aviation neurology) has already given his stamp of approval, so to speak. Hooray! Hope that makes sense...

So, a joyous day it is! Mark thinks that he'll actually be flying again in a month or so. He has to complete the "bureaucratic paperwork" and get a physical before he can receive his "up chit" and get back in the plane.

Thank you for all of the support and prayers and wishful thinking you've said for us... not only this week, but for the past 13 months as well. We ALL appreciate it SO MUCH!

Kristin

Tuesday, January 24, 2006 10:54 AM CST

Hello again! Sorry about the teaser indicating that Mark would be posting... Apparently, he forgot to pack his internet cable, so he couldn't get on line yesterday.

Mark will take the CogScreen test at 1:00 PM CST today in Pensacola. He rescheduled taking the test this morning because he was not able to follow Dr. Porter's orders to "get some sleep." He said he rested during the day yesterday (but never napped) and only slept for 3-4 hours last night. When he called me at 4:30 AM (my time!) this morning, he said he'd been up for about 3 hours already. Mark called again at 8:00 am (my time) and said that he STILL hasn't been able to sleep.

I know that he's VERY worried about taking this test as it appears that it's the final step in getting back into the air. The longer he delays it, the more worked up he's getting. Please say a quick prayer for him today that he'll pass this test with flying (pun intended!) colors! The "plan" is for Dr. Porter to present Mark's case to the waiver board on Thursday (this week) and recommend that he be returned to flying status asap. Mark may actually KNOW soemthing by Thursday afternoon. I know we're all anxious just to have some resolution to this situation.

The girls have been great while Mark has been away. Morgan has talked to her daddy every night on the phone which has made him feel really good. The three of us went to the park yesterday and Allyson "tested" the grass for the first time. Pablo had suggested letting her crawl in the grass and/or sand so that she gets a feel for different textures. When I set her in the grass, she immediately put her hand down (as if to crawl) and then quickly retracted it and made a funny face. Ally did this about three different times and then just sat there and cried. Even with all my encouragement, she was never "brave" enough to try it. I'll post some pictures later!

Have a great Tuesday!

Kristin

Monday, January 23, 2006 3:23 PM CST

Good news... at least things are looking that way...

Here's the teaser...

I spoke with Mark this morning. He met with Dr. Porter who looked at his MRI films and has a lengthy conversation with Mark. It sounds like it went pretty well and Dr. Porter said something like, "I'm on your side. I'm fighting for you. I want to get you flying again soon." Mark said he would post later on in the guestbook, but I wanted everyone "who's been wondering and praying today" to know what was going on. Mark will take the CogScreen test tomorrow morning. Dr. Porter said Mark looked tired this morning (and Mark said he had not slept well or much), so the doc recommeded taking the test Tuesday instead of today. So, Mark is taking it easy and resting in Pensacola and will return home tomorrow night. From what I gathered, Dr. Porter is hoping that Mark will do well on the test (at least better than he did in May) and then Dr. Porter will proceed with asking the "board" for a waiver to return Mark to flight status. This should all be resolved THIS week! Hooray! Keep your prayers coming and your fingers crossed for a few more days, but everything is looking really good.

That's it from me... hopefully you'll see Mark's post later tonight.

Love you all!

Kristin

Thursday, January 19, 2006 1:52 PM CST

Hello everyone! Yes, the 4-hour season premiere of "24" was heart-stopping, eye-popping, temples-pounding, and adrenaline-rushing! We loved every minute of it! WOW! For those who don't follow the show, you're missing out on some serious excitement/entertainment... Can't wait until next Monday for the next hour of the day to air...

Allyson and I spent a LONG day at CHLA on Tuesday. First, she saw Dr. Wright who was very pleased at how her hand is healing. I was able to clean up most of the gunk after Ally's bath Sunday evening, so she was scab-free for our doctor's visit. Dr. Wright showed me how to gently stretch both fingers to help improve their mobility. She explained that the pinky would be stiff for awhile and to keep in mind that it has never moved on it's own before, so we'll have to "help" it along. Makes sense. After the exam, we went to the splinting room and had to wait awhile for the OT/PT. The splint will straighten her Allyson's fingers at night as well as separate her ring and pinky finger using a piece of putty that's hardened in the mold of her fingers. I'll try to take a picture of it to post. Our third stop was to the ENT clinic (UNPLANNED!). While we were sitting in the waiting room for over an hour waiting to see Dr. Wright, I noticed fluid in Allyson's ear. I wiped it away initially, but when it reappeared later, I got concerned. I asked Dr. Wright and her nurse for some guidance. They suggested taking her to see her pediatrician. I told them that her ENT was at CHLA and they agreed that I should see the ENT or nurse on call in the clinic. So, we waited again and were able to get squeezed in to see the ENT. There was so much fluid in Allyson's left ear that he had to suction it out (you can imagine how fun THAT was!) in order to see what was going on. The ear tubes are still in place, but the cold that she’s had for the past week is now draining out of her left ear. The doc prescribed drops to help dry up the fluid and prevent any infection. I’m glad that we were able to get in to see the ENT rather than get all the home to see Dr. Huang and then have to go back to the ENT for suctioning. UGH! Allyson doesn’t seem to be in any pain from the exam, so that’s a good thing.

Yesterday, we saw Dr. See for Ally’s regular GI appointment. She was pleased with her overall weight gain and growth. Because Allyson is over a year old now, we will switch her over to Pediasure instead of formula. There are more calories in the Pediasure (30 cal/ounce vs. 22 cal/ounce) than the Enfacare she’s been on for almost a year. Her feeding regimen will about the same. We’ll continue to gradually decrease her nighttime feeding time while trying to give her more during the day. The big challenge will come after her palate repair when we start transitioning her off the g-tube altogether. I’m sure I’ll have lots to post about then.

Mark returned early from his trip to Bremerton and arrived home late last night. He departs for Pensacola on Sunday and will hopefully get some resolution of his “flying woes” next week. Please keep us in your prayers!

Tomorrow, Connie (our respite nurse) will come to take care of Allyson for a few hours while I get together with some friends. I’m looking forward to some Mommy time that doesn’t involve going to the grocery store, getting my haircut, or having my nails done (those aren’t necessarily FUN – they’re simply “maintenance” activities). Allyson loves seeing Connie, so I know they’ll enjoy their time together.

Hope you’re having a good week!

Kristin

Sunday, January 15, 2006 11:04 AM CST

Good morning! Hope everyone had a good week. Not too much to report here, but I'll update you on what we've been up to anyway...

Morgan had a good first week of Pre-K. She told me yesterday that she loves her new class and that she's glad she "gave it a try." Her teacher told us on Thursday that Morgan was able to read some three-letter words that were shown to her on flashcards WITHOUT pictures. We were pretty surprised but pleased, of course! Morgan seems excited about learning to read now and we'll continue to help her at home. She's constantly talking about Kindergarten and how it's "almost time" to start. I told her that she needed to learn how to read before she starts Kindergarten in September, so that will hopefully motivate her to keep trying. Her school's curriculum also teaches reading before Kindergarten, so she'll get reinforcement there as well.

Allyson is doing well although she's had a little cold/cough since Wednesday. She's been taking over the counter cold medicine and is getting better. Her hand is healing pretty well. There's a continuous scab between her fingers that bleeds and oozes occasionally... I think it's normal, but I expected it to be healing more quickly. We'll see Dr. Wright on Tuesday and find out her opinion. Ally's hand doesn't seem to be causing any discomfort. She's using her ring finger "normally" and we've seen some movement in her pinky as well.

Mark's "fate" is still up in the air. However, he will be going to Pensacola on Jan 22nd to complete the CogScreen tests and meet with Dr. Porter. The doc could not open the CD of his MRI films that Mark sent to him, so he needs to see the actual x-rays before he can make a decision about Mark's flying status. So, Mark will be travelling to Bremerton, Washington this week (Tues-Thur) for an air wing meeting and then to Pensacola next Sunday for another medical eval. He'll return on the 24th just in time for his squadron CO's change of command ceremony (which he's responsible fo setting up.) So, there's lots going on where Mark's concerned over the next couple of weeks.

We had a respite nurse here to take care of Allyson on Friday, so I got "out and about" for a little while. Mark and I went to a squadron dinner on Friday night and Patty came to babysit Morgan and Allyson. Morgan was SO excited to have Patty here and practically pushed us out the door as soon as she arrived! We had a good time at the dinner and a great time at a new wine bar we stumbled upon (not literally!) afterwards! We're planning to have respite care every Friday as long as the agency can schedule a nurse for us. We found out that we had A LOT of unused hours from last year that have been carried over to this year. Since Mark occasionally has Friday's off, it will be nice to be able to "regularly" do things together.

Hope you've all had a nice weekend. Our rain has ended, but the temps are COLD (in the 40s overnight!), so we're bundling up before we go to the Farmer's Market later today.

Have a great long weekend - for everyone who has one!

Kristin

Tuesday, January 10, 2006 11:47 AM CST

Hello! Well, let's just keep on believing that "no news is good news"... at least where Mark's flying status is concerned...

He had an uneventful trip to San Diego and I mean that in every sense of the word! He did not have the cognitive testing done because the program's software is being upgraded and won't be "up and running" for another month. We have no idea why they didn't cancel his appointment since that was the whole reason he was going! Anyway, Mark was examined by a Navy neurologist (a captain) and he passed all of his clinical tests. Some of the things he had to do were pretty funny - maybe he'll post about them some time! The doc also reviewed his MRI and said that there was still evidence of the contusion, but didn't make a big deal about it. We came up with the analogy that if you broke your arm when you were 10 years old and you had an x-ray on that arm many years later, the doctor would say "oh, I see you broke your arm when you were younger." The arm is fine, but there's still evidence that it was damaged at some point. I think that's what the doctor was talking about with regards to Mark's brain. There will always be signs of a contusion, but that doesn't mean that there's anything wrong with the brain. Of course, this doctor's opinion is not really a factor in determining whether Mark returns to flight status or not since he is not an AVIATION neurologist. However, just for kicks, Mark asked him for his opinion and he said he WOULD RECOMMEND a waiver to return to flight status. He said that clincally and radiologically, Mark is fine. Now, we have to hope and pray that the neurologist in Pensacola feels the same way. We're still waiting to hear back from him as he IS THE DECISION MAKER! As far as the cognitive testing goes, Mark is hoping that he'll be able to have the tests done locally (it's the same test required by the FAA for commercial pilots) or he may possibly have to go back to Pensacola. Time is of the essence - first because of Allyson's surgery in three weeks and second because he has a fit-rep due at the end of the month and "needs" to be back on flight duty (or at least have the paperwork in motion) before then. So... more waiting and hoping and wishing and praying.... like I said at the beginning of this journal... "no news is good news", RIGHT?

Allyson is doing well with her hand UNbandaged now. I gave her a bath Sunday night and let her hand soak and cleaned up some of the "gunk" that had accumulated. There's still a little scabbing, but it doesn't seem to bother her. She is trying to grasp objects in her left hand and can manage to do so some of the time. She's crawling and using her hand and even bearing her weight on her left hand while reaching for something with the right. I noticed that late in the day yesterday, she was using her elbow to crawl again, but I think she was just tired. There's been a little movement in her pinky, but it's still pretty sore and swollen. I'll try to take some pictures later today and post them for you.

Morgan had a good first day in Pre-K. She broke down and cried just before we got in the car to go to school yesterday morning, but was fine by the time we got there. Today she asked to go see Miss Mary (her former teacher) and gave her a hug before going into her new class. I think it was a great way for both Morgan and Miss Mary to start their days!

Hope your week is off to a good start!

Kristin

Sunday, January 8, 2006 10:44 AM CST

Good morning! Hope you’ve all had a good weekend. There hasn’t been much activity in the guestbook, so I’m assuming that you’ve all been as busy as we have.

Allyson is doing great with her “almost” un-bandaged hand. She is using her ring finger more to grasp objects between it and her thumb. Her flexibility is still limited, but we’ve seen improvements over the past week. Tomorrow, I’ll remove the bandage and we’ll see how she handles having her fingers exposed for the first time. Allyson is crawling around everywhere and using her left hand for support. She’ll resort to the “elbow crawl” every once and while, but is generally pretty stable on her two hands. At the therapy center on Thursday, she crawled through an obstacle course the PT created for her – tunnels, ramps, crevices, etc. She handled it all very well – although she wasn’t too thrilled with the whole process!

Mark was off from work last week, so he was able to see the therapy center for the first time and was also home for Pablo’s visits. It was great to have him participate in her therapy sessions and offer some assistance to me. I think Allyson enjoyed having both Mommy and Daddy encourage her during her sessions.

On Friday, we were able to have a respite nurse come to the house to take care of Allyson. After giving the nurse an orientation (this was the first time she had met Allyson and me), Mark and I went to lunch and did some shopping to spend some gift cards we had received for Christmas gifts. We also had some one-on-one time with Morgan who also enjoyed having Mommy and Daddy to herself!

Yesterday, we focused on getting all the Christmas stuff put away FINALLY! I’d been slowing working on it throughout the week, but there was still a lot to do. Morgan helped me undecorated the BIG tree and said “good bye” to each of the ornaments as she wrapped them up and put them away. She told each one “see you next Christmas!” It was cute to hear her and I appreciated the help – she was actually having FUN with it so it made the task a little more bearable for me! Morgan and Mark also went to the beach to jump waves for a little while. Although the temperatures weren’t as warm as earlier in the week, they still had fun dipping their toes in the ocean IN JANUARY!!!!

Morgan’s big news of the week is that she’s been “promoted” to Pre-Kindergarten. Tomorrow she’ll move to a new classroom (along with four of her preschool classmates) and join other 4 ½ and 5 year olds who are preparing for Kindergarten in the fall. We knew that Morgan would change classes sometime this spring before she started Kindergarten in September, but we were surprised that the move came so soon. Morgan’s teachers felt that she’s ready to “move up” and we’re so pleased with her progress. Of course, Morgan initially stated that she didn’t want to go as she’s VERY attached to her super-kind and loving teacher, Miss Mary. However, after some coaching and COAXING on our part, she’s agreed to “give it a try”! We’ll let you know how the first day goes on Monday.

Mark is heading to San Diego later today. He has an appointment with a neurologist at Balboa Naval Hospital tomorrow morning. He sent his MRI results to the doctor in Pensacola right before the New Year. While Dr. Porter in Pensacola is reviewing the results, he’ll have his cognitive tests done in San Diego under the supervision of another neurologist. We’re hoping to have “some answers” in the next couple of weeks. Please keep Mark in your prayers on Monday and hope that his tests go well.

Finally, it’s been a memorial weekend for our family here and in VA, DC, and GA as we all remembered my Gran who passed away a year ago yesterday. Allyson’s website was still brand new then, we had just made our first visit to CHLA, and Gran’s passing was one of the many things we all shared during those first few emotional months. I spent a lot of time thinking about Gran yesterday, not just because it was the anniversary of her death, but also as I packed up so many Christmas decorations she had lovingly made for us over the years. I know that she is with me everyday, but her presence is especially felt during the holidays – she loved the magic of Christmas so much!

Thank you for your continued support as our journey continues…

With love,
Kristin

Tuesday, January 3, 2006 10:06 PM CST

So we still have a SMALL bandage of sorts, but there are three fingers there! Allyson's hand is still a little crusty from the scabbing and ointments and her skin is still a little raw in between the two "new" fingers. We have to keep it wrapped until the weekend. Dr. Wright gave us some petroleum gauze to use like "dental floss" in between her fourth and fifth fingers. Because the skin is new and still moist, it can easily grow back together and create "webbing." Of course, we don't want this, so the gauze (i.e. floss) acts as a barrier between the new skin. Allyson was very curious to see her hand again and has spent a lot of time today looking it over. She put her thumb in her mouth right away. We've also seen her move her ring finger and she's bearing weight on her left hand when she crawls. She hasn't grasped anything with the left hand yet, but that's to be expected. So, things look good and she'll continue to get used to her new hand over the next few days and weeks. We'll see Dr. Wright again in two weeks and she'll make a splint for Ally to wear at night which will help maintain the proper separation between her two fingers.

The other good news of the day was that Allyson signed "more" this morning while we were feeding her baby food at the hospital. At first, I thought it was a random gesture, but then she did the sign for "more" three or four more times when I asked her if she wanted "more food." Mark and I were stunned and SO happy that she's gotten that! Hooray for our smart girl!

Morgan had a great day back at school and loved catching up with her friends!

I'll post more pics tomorrow and let you know how the new hand is doing!

Thanks, as always, for your concern and support! Go PENN STATE!!!!

Kristin

Monday, January 2, 2006 7:28 PM CST

Just one day into the new year and it's just the four of us in the house once again. After two weeks of company (and we were 10 strong at one point), it's such a let down to be "normal" again. :-) Mark is on leave this week and Morgan was out of school today, so the four of us were able to spend a day together for the first time in awhile. The girls seemed to realize that their "entertainment" had departed (i.e. Teetay and Geep) and gravitated towards each other all morning. Pablo was here for a therapy session and Morgan voluntarily interacted with Allyson - encouraging her to crawl over obstacles and feeding her rice crispies! Mark and I were rewarded with both Morgan and Allyson taking long afternoon naps AT THE SAME TIME! I got up on my soaps that I had TiVo'd two weeks ago and even managed to write some thank you notes for Christmas and birthday gifts! In spite of the dreary, rainy day, we had a good time! Morgan and Allyson are playing together again right now and giving me a chance to update the journal before preparing dinner.

Tomorrow, Morgan will return to school after a two-week hiatus. She was actually very upset this morning when I told her that school was closed (I had forgotten about the holiday until late last night and we had already prepared her for "going back" today!). She cried big crocodile tears when she realized that she'd have to wait one more day until she saw her friends again! The poor thing... Mark, Allyson, and I will travel to CHLA to see Dr. Wright. We expect Allyson to be bandage free after tomorrow's appointment. I'm hopeful that her fingers will "work" right away, although some physical therapy is anticipated. We'll let you know tomorrow when we return and I'll post new pictures of her three-fingered hand!

Teetay and Geep are arriving home in Virginia shortly. We had a wonderful visit with them and got spoiled with all of their help - feeding Allyson baby food three times a day (Teetay is the CHAMP), "allowing" us to go out and away overnight, giving Morgan her baths (Geep was the preferred bather!), cooking dinner every night (Geep again!) and cleaning, vacuuming, straightening, doing laundry DAILY (Teetay mostly!), etc., etc. I'm not sure that I know how to function in my own home again! Thanks for all you did for us - you guys ROCK! Can't wait to see you again on the 30th (just 4 weeks away) for some more "helping time" just before Ally's palate surgery.

Well, the playtime has ended and my girls are "needing" me. Happy New Year again! Thanks for your continued support for all of us!

Kristin

Sunday, January 1, 2006 9:59 AM CST

HAPPY NEW YEAR! I HOPE 2006 WILL BE A YEAR FULL OF JOYS, SMILES, GREAT HEALTH, AND HAPPINESS FOR US ALL!

I attempted to update the journal three times yesterday, but my efforts were thwarted TWICE by Allyson turning off the computer (she LOVES the "blue button") and once because the CaringBridge server was down. I had a very good birthday - pretty low key and enjoyable! I went shopping by myself :-) (although I didn't find much to buy - bummer!) and Mark and I went out for sushi and saw the movie "Munich" last night. We returned home before the new year and watched tv until midnight (well, I think we fell asleep before midnight but the fireworks behind our house woke me up!). Despite the pouring rain, it was a great day and now I have all year to look forward to my next "semi-big" birthday!

Our trip to Santa Barbara with Ashli and TG was a lot of fun too. Mark and I were rejuvenated by our time away and we had a great time just hanging out with our sis and bro-in-law (the four of us had never been out alone together!). We got to watch UVa beat Minnesota in the Music City Bowl (glad Aimee figured out which team to cheer for) while we ate great tex-mex food. After a dismal start to the game, Mark was especially thrilled with UVa's come from behind victory!

After we returned Friday night, we celebrated my birthday with the whole family and opened most of my gifts. The homepage photo was taken that night during the "party". Geep prepared my "traditional" birthday dinner of prime rib, twice baked potatoes, and asparagus and the six grown-ups enjoyed sitting down together one last time... Aunt Ashli and Morgan made chocolate cupcakes with pink and lavender icing and LOTS of candy sprinkles and pink gel writing! Ashli and TG flew back to D.C. Saturday morning and arrived safely yesterday evening to ring in the new year with their neighborhood friends!

Tomorrow we'll say good-bye to Teetay and Geep as they return home to Virginia. It's been a wonderful almost two-week visit with them and we're looking forward to having the return to help us after Allyson's palate surgery on February 1st. Mark and I can't believe that's just a month away!

Again, Happy New Year to you all! God Bless you!

Kristin

Thursday, December 29, 2005 9:49 AM CST

Good morning! We've been having a good week with Teetay, Geep, Aunt Ashli, and Uncle Tommy.

Today the "big" girls (no boys or babies!) are going to see "Nemo on Ice" in Anaheim. Morgan is so excited to see how they "freeze the ocean" and put skates on the fish!

This evening, the four "big" kids are heading to Santa Barbara for an early birthday celebration for me and some grown-up time. We're looking forward to staying in the heart of SB and dining at one of our favorite restaurants, The Wine Cask, tonight. Tomorrow we'll have breakfast while watching UVa play in their bowl game and Ashli and I plan to do some shopping along State Street.

Allyson had her 12-month check-up with Dr. Huang and now weighs 20 lbs. 2 oz and is 30 inches long. She's weighs slightly less than Morgan did at this age and is actually LONGER than Morgan was at 12 months. She received a good check-up from Dr. Huang and fot her dose of shots. I asked Dr. Huang about checking her kidneys... she hasn't had any problems (that we know of), but because of her syndrome there are often problems with the kidneys. Allyson had an ultrasound (normal)at birth and I was asking Dr. Huang if she needed a follow-up of that. Instead of doing an ultrasound, he said we could get a urine sample and test for protein, sugar, etc. Well, all her levels were normal, however, she showed an elevated level of bacteria in her urine. So she's on antibiotics for 4 days and then we'll do another sample. Dr. Huang said this is just "one more thing" to add to Allyson's list of "stuff" - meaning that if she ever has an unexplained fever not associated with any cold symptoms, we'll now know to take a look at her urine first.

Mark got his MRI results back this week as well. The local radiologist read his MRI as "Normal." Of course, this is GREAT news and a step in the right direction as he moves towards regaining his flight status. He has sent his report and films to the Navy Neurologist in Pensacola. This doctor will recommend (we hope) that Mark receive a waiver to return to flying duty. He thinks that he'll find out something in the next few weeks! Keep praying!!!!

Well, that's about it for this week. Hope you have a great end to 2005 and a wonderful start to 2006!

Kristin

Tuesday, December 27, 2005 10:20 AM CST

Good morning on this day after the day after! Hope everyone had a great Christmas and Happy Hanukah and Happy Kwanza to all those who celebrate those holidays!

We are slowly winding down, putting gifts away, finding room for ALL the new TOYS that the girls have acquired... it's quite an undertaking, as I'm sure all the moms and dads of little ones know... We had a wonderful Christmas Day together. Allyson was actually the FIRST to awaken (so much for her week-long stretch of sleeping through the night!). Geep (who's sharing her room) and Teetay (who's sharing Morgan's room) and I were up a little before 5 am. Allyson was intent on NOT going back to sleep and cried every time I tried to put her back in her crib. So, I held her and rocked her and held her until about 6:20 am so that everyone else could continue sleeping. We were all up and "ready to go" by 6:30 and surprisingly had to WAIT for Morgan to get up! She was awake just before 7 am and our Christmas Day officially begun! It was terrific seeing Morgan so thrilled with all her Santa gifts as well as her family presents. Of course, I think she was overwhelmed a little too and kept taking "breaks" from her gift opening to play with a new toy or put on a new outfit! Allyson seemed content playing with a few of her "bazillion" toys/books/learning tools at a time. Morgan also made a point of playing with Allyson's new things that she seemed to enjoy as much as (if not MORE) than her own! After opening our gifts, we had a pretty relaxing day. Everyone helped out with our Christmas dinner preparations and we enjoyed just being all together!

Yesterday, Morgan went ice skating for the very first time. As Uncle Tommy as her teacher, she did pretty well and made it around the entire rink one time. She didn't fall at all (and was clinging to Uncle Tommy and the side wall the whole time!) and seemed to enjoye herself! Aunt Ashli took pictures, so I'll post one later this week.

The grown-up girls (Teetay, Ash, and me) did a little shopping and bought new carseats for out big one-year-old (her birthday gifts from both sets of grandparents) and we got a new side-table for out desk to hold the new all-in-one printer we got for Christmas from Mark's parents. It was fun being "out" with my mom and sister...it's something we don't get to do very much anymore!

As I wrote in the last journal, we are still "awed" by the amazing gift Dani sent. Her compilation of all the journal and guestbook entries from the past year is mind-boggling! We missed each other's phone calls yesterday, but I'm sure we'll talk soon! Dani's gift is/was amazing and a true Christmas gift of love. As if that wasn't ENOUGH, we also received a card in the mail from a friend of my good friend, Aimee (numbers girl 1), in Minneapolis. Aimee's friend (who I met only once at Aimee's wedding) sent us a very generous check for Allyson's medical fund. So for the second time in a week, I was STUNNED to TEARS by the outpouring of love and support and kindness from someone who was been touched by Allyson's story. Thank you all for everything you've given us!

I must sign off now and get ready for our day. Allyson has her 12-month check-up with Dr. Huang this morning. Im guessing that she's hit the 20-pound mark and is pretty close to Morgan's size at this same age! More updates later this week!

Kristin

Saturday, December 24, 2005 1:20 PM CST

We survived Allyson's first birthday party! It was lots of fun and even though there were only 10 kids - the four "under 2s" made it seem like there were 25 kids! Lots of excitement enveloped our house (and backyard/patio) where kids swung and played in the dark!

Allyson was a trooper, although all the commotion "got to her" after awhile. We put her to bed before the last guests had left. She looked like a doll in her "1st birthday" shirt, bib, and crown from Aunt Mer, Uncle Glenn, and Spencer. She also wore her new green (to match her bandage) pants from "Aunt" Aimee, Jim, and Tyler. What a cute ensemble for an even cuter girl!

Aunt Ashli and Uncle Tommy arrived around 2pm and got to see Allyson (well, Morgan actually) open her presents. We also had a surprise visit from "Aunt" Susan and Elena who drove up yesterday from San Diego just for Allyson's party. Along with our Navy friends and Port Hueneme neighbors, Pablo, JanDee, and Patty (Allyson's interventionists and Occupational Therapist) also joined us for the party! We were all pretty tired afterwards, but pleased that everything went so well!

Of course it was great to have all the grandparents here, and Aunt Ashli and Uncle Tommy too, and so many loved friends and friends, but the BEST PART of the day was when I opened a VERY SPECIAL gift for Allyson. My dear friend and website "fan", Dani, compiled 6 scrapbooks of all the journal entries and guestbook entries from the past year. She also included pictures and highlighted the major events that have occurred in our lives over the past twelve months. It is an awesome expression of her love for us and a HUGE devotion of her time and energy (and postage!) to put the books together for us. I will treasure this gift always, as will Allyson, I'm sure. Thank you, thank you, thank you, Dani, for loving us so much and for doing this for us. You are the BEST kind of friend to have!

Now we're switching gears and looking towards Christmas Day tomorrow. We had a tearful good-bye with Grandma and Grandpa Kelso this morning who are headed to Atlanta to spend Christmas with Glenn, Merideth, Spencer, and Merideth's family. We wish them safe travels today as they fly back across the country.

Mark will get his MRI results back next week. He will forward them to the Navy docs in Pensacola who will determine if he has healed enough (or completely, we hope!) and recommend a medical waiver so that he may return to flight status. Keep those positive prayers coming!

As Allyson's first year is now behind us, I must thank all of you (again!) for your generosity, love, support, prayers, acts of kindness, etc. that you've given us. This website has been a wonderful tool for bringing people together, sharing laughs and tears, and expressing sentiments and feelings. You are our friends and family and we love each and every one of you.

Christmas Blessings,
Kristin

Friday, December 23, 2005 9:30 AM CDT

Good morning! Keep Mark in your thoughts this morning as he has his MRI to see "just how well" his brain has healed. He's having the MRI done at 8am 'our time'... just a few minutes from now. Thank you!

We had a great time celebrating Allyson's birthday yesterday. The Polar Express train ride was lots of fun last night! As Grandma K. posted, the best part was when the whole train (well, at least our car) sang "Happy Birthday" to Allyson and she giggled and smiled as I held her up in the air for everyone to see her. It was GREAT! Santa also made a special stop by Allyson's seat to wish her a happy birthday. As I took the picture of their faces side by side, Santa said, "It doesn't get any better than this!" You're right, Santa!

Allyson also had the honor of having all of her grandparents sing to her in the morning - all wearing their pajamas! (Well, Geep and Grandpa were BOTH wearing Penn State t-shirts! Go figure... the SON who's not here yet got HIS school highlighted by the Dads!)I was able to capture that priceless serenade on video.

Today is the BIG 1 Pooh party and the preparations have begun! We're expecting about 20 adults and 12 children (5 of whom are under 2). Should be fun for all!

Thanks for all the birthday posts in the guestbook. Allyson is a lucky little girl and she's so privileged to have all of you in her life!

Happy Friday and Merry Chirstmas EVE Eve!

Kristin

Thursday, December 22, 2005 0:45 AM CST

Happy Birthday to Allyson! Happy Birthday to you! WE love you so much, happy birthday to you!

WOW! What a difference a year makes... We're so glad to have all of Ally's grandparents here to celebrate the "BIG ONE" with us.

We've had a wonderful visit with Grandma and Grandpa since their arrival Monday. Teetay and Geep have now arrived as of about 15 minutes ago... Ashli and TG will round out our clan on Friday. We're looking forward to spending some special days altogether Thursday and Friday.

Our holiday spirit is alive and well her in Port Hueneme! We visited Santa on Tuesday and Morgan's been extra good after asking him to bring her a "Furby" and to bring Allyson some blocks. She's been so sweet in helping us prepare for Allyson's birthday and party too.

Thank you all for sharing our lives this past year and offering so many loving words of support to all of us. We sincerely appreciate everything you've done/been/said/given to us!

We wish you and your families well this holiday season.

Happy Birthday, Allyson! Your whole world is celebrating this special day with you!

Monday, December 19, 2005 0:13 AM CST

Hellofamily, friends, and loved ones!

Here we are at the start of our BIG week. Relatives start arriving on Monday. Allyson turns the BIG "1" on Thursday! And of course, Christmas next Sunday! We're so excited I can't stand it! Hope you are too!

Morgan's little stomach bug seems to have gone away, but not until it passed through both Mark and I over the weekend. She's been fine since Friday and Allyson hasn't been bitten by the "bug" (thank goodness!), however Mark and I haven't felt great since Friday. I think we're all mending now and ready to face this week of FUN! Hooray!

We had the thrill of playing in the snow on Saturday... yes, here in southern California where it's 65 degrees! We took Morgan to the Youth Center on base where they had blown fake snow for the kids to play in. She had a blast and it was lots of fun to see her so excited about throwing snowballs at Mommy and Daddy. She ran into a couple of boys from her school and she STARTED throwing snowballs at them and begged them to throw them back at her. She was the leader of the pack, for sure!

Morgan also got her haircut on Saturday - a whopping 2 inches of blond curls were cut off! I was nervous that the curl had been cut away, but her lovely locks have bounced back. The two inches were at my request... she needed to get a "healthy" cut and remove the dry, thin ends. Our hairdresser was amused by Morgan's non-stop chatter and new-found love for having her hair washed in the big sink! For only her third haircut of her life (all occurring THIS year), she did super!

We've got a busy week ahead, so I need to hit the hay! Have a wonderful pre-Christmas week and let us know what you're up to with your guestbook entries!

Thanks for your continued support!

Kristin

Thursday, December 15, 2005 10:26 PM CST

Yes, the color of the week is GREEN! Check out the new bandage which is now only wrapped up to Allyson's wrist (not to the elbow like before). We'll return to CHLA on January 3rd for the removal of the bandage and pin in her hand... until then, green is lovely, isn't it?

Finally a GREAT picture of Morgan and Allyson together! Don't you just love this picture of the girls in front of the Christmas tree wearing their stylin' jammies from Aunt Ashli and Uncle Tommy??? Of course, I get this shot TONIGHT after I mailed all my Christmas cards TODAY! I guess I've got a head start on next year already! Who cares if the kids look a year younger than they're supposed to be?!?!?

I'm supposed to be with Mark and his squadron Christmas party tonight. However, Morgan got sick at school today and again (twice) after we came home, so I cancelled the babysitter/nurse and Mark went to the party alone. Morgan seems to be feeling fine now (as you can tell by the picture... no "silly tummy sickies" there!). I hope she was only sick because she ate too much at their classroom party today and isn't coming down with anything serious. Her teacher told me that she had "several helpings" of spaghetti and "a lot" of bread and salad. Miss Mary said that she's never seen Morgan eat so much before! Well, I can tell you that there's not ANY spaghetti left in her stomach now. Aren't you glad I shared that with you? Keep your fingers crossed that no one else in the house gets sick - YIKES!

On Monday, our visitors begin to arrive. Grandma and Grandpa Kelso will be here Monday afternoon. Teetay and Geep fly in Wednesday night. Ashli and Tom will join us next Friday afternoon - just in time for the big one-year-old Pooh birthday party!

I'll try to keep updating the journal throughout the week. Hope you're all enjoying your holiday countdown!

Kristin

Tuesday, December 13, 2005 0:13 AM CST

Hello! Sorry I haven't had a chance to update the journal in a week. Blame it on the holiday bustle! I'm sure just about everyone can relate to that!

Allyson continues to recover well from her hand surgery. She is crawling around like she was before the operation/casting/bandaging... and setting "land speed records" as Mark likes to say. We have a follow up appointment with her doctor on Tuesday. I'm expecting her fingers to remain bandaged in a soft wrap until probably the end of the month or early January. Dr. Wright said she wanted the skin to completely heal before exposing it to "the elements" again.

We were busy over the weekend with holiday parties. On Saturday, we attended the Air Wing Kids' Christmas party at Point Mugu. Morgan had a lot of fun with the crafts, jolly jump, and games. She chose not to sit on Santa's lap and told me that we can "go see him at the mall." Gotta love that candor! We also went to a party hosted by Pablo's Early Intervention Organization, Amigo Baby. We enjoyed a great lunch and got to mingle with all of Allyson's therapists. Not only did the children who participate in his program receive a special gift, but their siblings did too. Pablo selected a doctor's kit for Morgan because he recognizes how smart she is and knows how well she helps us take care of Ally. We were truly touched by his generosity!

On Sunday, we attended a birthday party for one-year-old twins. I met Keira and her mom, Jennifer, at CHLA when both girls were wearing the NAM device. Keira (and her twin, James) also have an ED syndrome called Hay-Wells Syndrome. We've shared many similar experiences and were honored to be included at their party. Morgan found a new friend in a four-year-old boy at the party and they entertained each other amongst a mostly adult crowd.

Today I had the pleasure of babysitting for a squadron friend of ours. I took care of 20-month old Brenna while her daddy was flying and mommy was at a taping of the "Ellen" show. Ally and Brenna played well together and were very interested in watching one another - there was a lot of mimicking going on and I think they both learned the meaning of the word, "share." We even took a trip to the park and afterwards, I managed to get both girls down for a nap at the same time. Hooray for ME! In the hour and a half while they were sleeping, the majority of my Christmas cards got addressed and signed. Now, if I could just finish that darned Christmas letter! You know, I have so much to say and not enough paper (or stamps)! ha ha :-)

On a final note, for those who are wondering, Allyson HAS been sleeping better the past few nights. We've had one night of NO wake-ups and several others with minimal disruptions. Mark and I set a goal to "get over" this hurdle before we have a house full of company next week. With Ally's 2:00 a.m. antics like they were, I was afraid that no one would ever want to visit us again... EVER!

I'm off to bed now... Hope you have a great week and enjoy the final days of the countdown to Christmas!

Kristin

Tuesday, December 6, 2005 5:58 PM CST

And then there were THREE!!!!

I snapped a few pictures of Ally's "new" hand in between bandaging at CHLA today. Dr. Wright is very pleased with how her fingers look and especially how they're maintaining the spacing between them - that's a good thing, she said. There is still some swelling - which is to be expected after just a few days. We'll continue to elevate her hand above her head when we can while she's sleeping.

Allyson was great when her cast was removed... she didn't even flinch when the tape was peeled off jer skin or when the soft bandages and plaster were cut away. However, I felt a little whoozy (sp?) myself. I wasn't prepared to see how blood soaked (dried of course)the gauze and cotton were under the cast. It was much more than I had anticipated and was thankful when the technician left the room and I was able to sit down and get my bearings. We don't need anyone else passing out in a hospital, do we?!?!? I had to hold Ally's hand down in a tub of sterilized water for 10 minutes in order to loosen the last layers of the gauze. She only fussed a little bit during that process, but only because she was starting to get tired and wanted to nap.

Ally's hand is wrapped up once again with gauze, cotton, and covered with a stretchy hot pink tape! Only her thumb peeks out a little bit. Her hand and forearm are wrapped so she's able to move her elbow and crawl a little better. Her skin is very dry and cracked after being in the cast. She also has a dime-sized blister on the back of her arm just above the elbow. I'm guessing it's from the materials rubbing against her skin in an abmormal way. So, we'll lube up her upper arm and hope the skin will heal soon!

I've posted two more hand pictures at different angles on the photos page. I'll try to get one of the pink "mini club" later tonight or tomorrow.

When I showed Morgan these pictures, she got the biggest smile on her face and counted out loud, "1,2,3 fingers." She asked about the "stuff" (dried blood) on Ally's hand and I told her that "she had a bleed" (Morgan's phrase for when she gets a scrape or a cut). Then Morgan asked if it hurt her and I told her that it probably did a little bit, but that Ally was very brave when the doctor took off her cast and that she didn't even cry. Morgan smiled and said, "I have the bravest little sister in the whole wide world." I couldn't agree more!

I'll close on that note. Thank you for your continued support and for keeping us in your prayers as we cross this latest hurdle!

Kristin


Monday, December 5, 2005 3:39PM CST

Hope you all had a great weekend - if it was anything like ours, you were probably up to your eyeballs in holiday activities!

I'm determined to finish decorating the house this week. As many of you know, I have an EXTENSIVE collection of Santa Claus figures (about 80 strong) that I put on display each year. My Aunt Dale started the collection for me when Mark and I got married 10 years ago and it's grown by leaps and bounds over time. It takes a awhile to unpack them all and set them up and dust them off, etc., etc. They're now "up" in our living room, the stockings are hung over the fireplace in the den, the lighted garland is strung up the bannister along the stairs... and yet, I'm not DONE yet! I think I need a few more days and then I'll post some pictures for you all to see!

Anyway, I digress... I'm sure you're much more interested in how Allyson is doing than how my holiday decorating is progressing, right? Well, aside from keeping us up at night, she's doing pretty well. Just to clarify, she is NOT crawling on her cast from room to room... that's something she was doing last week BEFORE her surgery. However, she is manuevering across the floor in a scoot/side crawl motion. We'll see her doctor tomorrow morning to remove the cast. I hope the softer bandage will allow her to move more freely, but won't expose her to MORE pain. She doesn't seem to be in much pain at all... I think she just gets frustrated with the weight and bulkiness of the cast.

Morgan and I shopped for Allyson's birthday party over the weekend. Morgan chose a "Winnie the Pooh #1" theme for her sister and helped me buy invitations, decorations, and paper products. Just before we paid for our purchases, Morgan exclaimed that we had forgotten the most important thing... a PINATA! So, we purchased a Winnie the Pooh pinata just like Morgan has enjoyed at all the birthday parties she's attended since we moved here! (Although, she's never had a pinata at one of her parties!) I guess you could say that Morgan's a true California girl and that we'll be celebrating Allyson's birthday "California style!" It was very cute and she had a ball being the "big helper". I'm sure she's going to enjoy the birthday party a lot more than Allyson will - she probably won't even know what's going on! And in case anyone is wondering, I'll be making my "infamous" Pooh cake for the party!

Morgan also had her first "date" on Sunday (not playdate, but "date".) She prepared a basket of fresh fruit and invited her friend Parker to come over. Parker arrived with a bag full of his Star Wars toys. Morgan was prepared with a tablecloth and napkins and set out a tea party for Parker and herself. She put the basket of fruit between them and asked me for a candle to make the date "complete." Parker wasn't too thrilled with the "date" idea (he had no idea what he was in for!), but endulged Morgan and sipped tea with her for about 30 seconds. Needless to say, the Star Wars toys stayed in the bag by the front door the whole time Parker was visiting! It was so funny to see Morgan so serious about "how" things should look and what they should do on their "date". She got very upset when Allyson and Parker's two-year old brother, Ian, started knocking over the teacups ad interrupting her date! It was such a cute scene - I just had to share!

Hope you have a great week! I'll let you know tomorrow how the appointment in LA goes. Now it's back to the frenzy of decorating-addressing Christmas cards-wrapping presents-getting to the post office to mail boxes-and taking care of Allyson who's fighting nap time right now-mode!

Kristin

Thursday, December 1, 2005 8:50 PM CST

We're home and look who's smiling (sort of!)... at least for now. Maybe it's because I just gave her some Tylenol with codeine...hhmmmm...

I know you're all anxious to hear the scoop, so here it goes...

We left the house at 4:30 a.m. and Allyson was the first patient to arrive at surgery admitting this morning at 5:50 a.m. We got checked in and checked over and were in the PACU by 7 a.m. Because the hospital only allows two people to be at the patient's bedside at a time and no one under 12 years old is allowed in the pre-op/recovery area, Mark stayed downstairs with Morgan while I went with Allyson. She was even-tempered and curious about her surroundings and finally fell asleep a little before 8 a.m. (neither Morgan nor Ally slept in the car on the way to the hospital!). Mark and I switch "duties" after Ally fell asleep and he stayed with her until she went into the O/R.

Her hand surgery lasted exactly 3 hours. We were separated from her for about 4 hours. During that time, Morgan played in the various playrooms and on the “playground” in the lobby. As usual, she interacted with both siblings and patients at CHLA without a second thought. She was encouraging to others and played so nicely with others. Mark and I were very proud of how well she did today – never whining or complaining at all. Again, Morgan stayed with Mark while I sat the Ally in recovery. She ate her Happy Meal and fell asleep in his lap. I returned to the waiting room briefly to update him on Allyson’s status and make a quick phone call to Teetay. Allyson was unusually sleepy after coming out of anesthesia this time, however, she wasn’t fussy or irritable like she’s been in the past. We stayed in recovery for almost two hours – she slept for over an hour and was “required” to be somewhat alert and coherent prior to being discharged. We hit the road around 3:45 p.m. and pulled into our driveway at 5:45 p.m. – just before dinnertime as I had hoped!

Dr. Wright explained that the surgery went very well. It was a tedious procedure since Allyson is so small (and her hands are even smaller in proportion to her body). When Dr. Wright separated her fingers, there was not a lot of tissue in between the bones, so she added “some fat” (from somewhere within the hand?!?!) to give Allyson the natural cushion between her fingers. As Geep mentioned, the doctor said that her ring finger kind of “snapped” back into place when the pinky was cut away – that’s a good thing! Dr. Wright also inserted a pin in her hand to hold the bones (from the separated fingers) in place while the tendons in her “new” fingers get used to their “new” function. She was very positive about Allyson’s prognosis and felt that the functionality of this hand and fingers would be improved once she heals from the surgery. Allyson is wearing a hard cast until Tues, Dec. 6th and then her hand will be wrapped with a soft gauze-like bandage. The pin (inserted externally) will stay in for about a month. Ally will wear the soft bandage for about a month as well and then she’ll have a splint to wear overnight.

All in all, it was a good day. Of course, we’re very tired, but so happy to have surgery #3 under our belts! When I thanked the nurses and said good-bye this afternoon, I informed them that we’d be back in exactly two months for Ally’s palate surgery. That day will be here before we know it! Whether this is “good thing” or not, Mark and I agreed that it does get a little easier each time we watch her being wheeled away to the operating room.

We definitely felt the support of all of you today. Even in my exhausted state, I was looking forward to checking the guestbook this evening to see what had been posted today. Thank you for keeping us in your prayers and thoughts and for sending your well wishes!

I’ll keep you posted on Ally’s progress through the weekend. It’s time to put Morgan to bed and then I’m hitting the hay myself!

God Bless you all-
Kristin

Wednesday, November 30, 2005 3:48 PM CST

Hello! Hope you all have emerged from your "turkey comas" and are back to your normal routines. We had a wonderful visit with Teetay and Geep... lots of GOOD FOOD all week (thanks, Dad!), trips to the park and to the NEX, a visit to the Santa Barbara Zoo and the Farmer's Market... and Teetay and I handled it on a very small amount of sleep each night.

Allyson's nighttime sleep issues are improving, however. We've increased some of her reflux medicine and changed her feeding pattern overnight. She's actually getting a "break" now from midnight to 6 a.m. and is "tube free" during those hours. It seems to have helped! Even though she's still awakening around 2 a.m., she's back to sleep within 15 minutes (versus 3+ hours!!! that we "experienced" over Thanksgiving weekend.) Keep your fingers crossed that she doesn't suffer a sleeping setback after her surgery.

On that note, here's the scoop about her surgery on Thursday, December 1st. We are supposed to arrive at Children's Hospital at 6:30 a.m. We've decided to leave the house EARLY in the morning and drive into L.A. instead of spending the night at a hotel tonight. Her surgery is scheduled for 8:30 a.m. and will last about 3 hours. Once she's stabilized in recovery, we will be able to come home. I'm hoping we'll be home by dinnertime tomorrow night.

I'll call our close family members and hopefully someone can post an update after the surgery. Ashli is in Chicago on business, so she may not be able to update the website before I get home. I'll definitely add a journal entry once we're home and settled tomorrow. Thank you for keeping us in your prayers once again!

We have a busy December in store for us. Finish decorating, holiday parties, Allyson's first birthday, family visits, etc. It's easy to lose focus on the big picture this time of year and get wrapped up in all the little details, so I want to thank you NOW for your support for all of us over the past year. I cannot express how much it has helped ME and our family to know that so many people are keeping up with us and praying for us and thinking of us and sending us gifts and cards and letters. My words are not enough to convey my gratitude, but please know that it is heartfelt.

Love you all-
Kristin

Friday, November 25, 2005 11:22 PM CST

Hello! Yes, it's time to head into the next season... CHRISTMAS! You'll notice that my girls got a jumpstart by wearing "holiday" outfits yesterday. Very cute!

As Teetay wrote in the guestbook, we had a very nice and relaxing Thanksgiving Day. It was great to spend time with our dear friend of 11+ years, Josh, before he moves to Washington, D.C. next week. His new place is pretty close to Ashli and TG, so they'll probably be seeing him more often than we do... even with the crazy hours he'll be working at the Pentagon!

Today, Mark strung all the lights up around the house and trees and bushes. They look great! We're adding a couple of lighted deer this year (at Morgan's request), so they'll be joining the front yard menagerie tomorrow. Earlier, Morgan decorated her own Christmas tree in her room (after Teetay and I moved her furniture and gave her room a minor makeover!) and really enjoyed seeing all the ornaments she's accumulated over the past four and half years. This evening, we decorated our "main" Christmas tree in the living/dining room. We still have three trees to go (yes, I put up FIVE Christmas trees!) and the rest of the house needs to get finished. I figure we'll be done before the end of the weekend!

I hope everyone is having a great Thanksgiving weekend and doing whatever makes them happy!

Good night and God bless-
Kristin

Thursday, November 24, 2005 11:23 AM CST

HAPPY THANKSGIVING FROM THE LITTLEST TURKEY IN PORT HUENEME, CALIFORNIA!

We hope you all have a wonderful day... full of smiles and warmth and making memories with those you love.

We are so thankful for our never-ending circle of friends and especially for everyone who has joined us on Allyson's journey this year.

God bless you and your families. Thank you for being a part of our lives.

Love,
Kristin, Mark, Morgan, and Allyson

Sunday, November 20, 2005 11:38 PM CST

Guess who’s CRAWLING??? Today, Sunday, November 20, 2005, is “the day” we’ll officially record for this milestone. Allyson isn’t going TOO far (yet!), but she’s got some velocity and takes off for six or seven “paces.” Morgan thinks it’s great and calls to her “Come here, Ally, you can do it!” We are thrilled to say the least! And for anyone wondering, Morgan started crawling just before she was eleven months, so our girls have reached this milestone about the same time. That’s HUGE!

So, I’ll claim that I’ve neglected updating the journal for over a week because we’ve been so diligent with Allyson’s exercises and therapy… It HAS been a fairly busy week with not a lot of sleep. Unfortunately, Allyson has decided that she wants to play in the middle of the night, or wants to be held, or wants to flop around from her back to her stomach like a fish… anything and EVERYTHING but laying down and SLEEPING! This has been going on for over two weeks now. We’ve seen Dr. Huang twice (thinking that her ear infection was more severe or that the antibiotics weren’t working), but nothing is wrong medically speaking. She may still be teething – it’s hard to tell what’s going on with the “hard place” I can feel on her upper gum line. We’ve tried Benadryl at bedtime, which worked one night last week, and I was able to sleep from 10:30 to 4:30 without interruption! I hope that this is just a phase and that the end of it is just around the corner. Maybe with all of her crawling, Allyson will be so pooped that she’ll sleep soundly from now on… keep your fingers crossed!

We saw Dr. Kay, the orthopedic foot specialist last Monday. He is still recommending surgery to close the “v” in Allyson’s feet. Most likely, we’ll have the surgery done next summer after our trip to east coast for Teetay’s retirement and 2nd Annual Rally for Ally. He was pleased with her flexibility and suggested that she wear high top “walkers” for ankle support now that Allyson is standing (when placed in the right position) and bearing weight on her feet. Dr. Kay didn’t feel like a splint was necessary since she can easily rotate her ankles. We’ll follow up with him again in March and schedule the surgery at that time.

It has been very warm and windy here and there was a fire burning fairly close to Ventura – just 15-20 miles from here. It's hard to get into the holiday spirit when it's so hot outside, but I’ve gotten some of my shopping done and we’re planning to decorate the house after Thanksgiving. Way to go, Teetay, for getting YOUR house decorated last weekend so you can help ME after Thanksgiving. Aimee, I'm disappointed that those lights aren't up yet. You knew that snowfall would be right around the corner! However, I'm sure that Jim's sweet dad will jump at the chance to help his son hang those lights over Thanksgiving! When there hasn’t been ash and smoke in the air, we’ve enjoyed trips to the beach (yes, in November) and the park. Morgan even played in her inflatable baby pool on the patio yesterday.

Mark and I got dressed up for the annual Hawkeye Ball last night. It was the 4th one we’ve attended since we’ve been back here in California. All for west coast E-2 squadrons were home, so we saw lots of old friends and had fun hanging out with our new ones. Patty, who works with Pablo as an Infant Developmental Specialist, babysat the girls for us. Morgan had a great time with Patty and colored and read stories and played outside. Patty mastered all of Allyson’s “machinery” after brief instructions from us and did not encounter any problems throughout the night. Now if only she’d still been here at 2:30 am when Ally awoke (and stayed awake for over 2 hours!!!!) after we’d just returned home and had only been asleep an hour. Ugh! Needless to say, today was a "lazy" day and I need to get to bed soon... you never know what Allyson might have in store for us tonight!

Teetay and Geep will arrive late Monday night and stay through next weekend, so we’re gearing up for their visit and Morgan is super excited to see them. I know that they’ll be thrilled to see Allyson crawling in person too! Geep has said that he “wants” to do the shopping at the commissary for our Thanksgiving feast, so I will LET him! I’m excited to have my parents here this week to celebrate with us. I wish everyone safe travels to wherever you'll be spending this holiday week.

So as we begin this Thanksgiving week, let me reflect on how thankful WE ARE to have all of you in our lives. The past eleven months have taught me so much about my family, my friends, and myself. I am thankful for all the blessings we have received, but most of all for the knowledge that I am not alone in the challenges we face daily. Thank you all for that and Happy Thanksgiving!

Love,
Kristin

Friday, November 11, 2005 10:39 PM CST

And you thought that THANKSGIVING was right around the corner?!?!?! Guess again!!! My dear (not OLD) friend, Aimee, must have encouraged the Christmas bug to bite me early this year! :-) hee hee

Seriously, this is just a PREVIEW of our holiday portraits that were taken at Sears today. The girls did a great job and we got lots of terrific portraits PLUS our very first professional photo of the four of us. Hooray!

So, after dressing in our "Christmas clothes" all morning we changed into shorts and tanks this afternoon (and Morgan in her BATHING SUIT) and took a trip to the beach! Only, in southern California could you enjoy "snowflakes" in the morning and the sand and waves in the afternoon.

We've had a pretty busy week. I took Ally to the doctor on Wed. after two restless nights and days (i.e. she wouldn't lay down and go to sleep for very long periods of time). Her runny nose and cough were "better", but my Mommy hunch told me that she probably had an ear infection. I was right, so she's been on antibiotics since Wed. afternoon. The days have gotten a little better and she's been napping some. The nights are still pretty bad - waking up every hour from 11pm to 2am most nights. I think Ally might be teething as well. I can feel "something" on the right side of her upper gum line... just on the other side of the gap in her alveolar ridge. We're giving her Ibuprofen and oralgel for the pain. So far, it's working tonight!

I'll update some more this weekend. Ally's ear infection and subsequent "habit changes" have consumed most of my time this week... Of course, therapy continues and she's getting closer and closer to crawling each day. Morgan is thrilled with Ally's new found skills and is the ever-encouraging big sister.

Hope you all have a great weekend!

Love,
Kristin

Sunday, November 6, 2005 11:21 PM CST

Hooray for the Redskins! Yes, I ACTUALLY wrote that! What a great game tonight between Mark's team and TG's team (the battle of the son-in-laws). Hope the VA and DC and PA peeps that attended the game had a good time! Morgan can now sing the words to "Hail to the Redskins". She's only a little "confused" by the opposing team loyalties in our house... every few minutes she would yell, "go Dallas Redskins!" Anyway, there's a picture of her wearing her Redskins jersey on the photos page. (Note to all the Cowboys fans: I ONLY "ALLOWED" THIS TODAY BECAUSE DALLAS HAD A BYE WEEK.)

Anyway, we've had a good weekend. A little house cleaning, a little fun, a little relaxation... Yesterday Mark and Morgan went to Ventura Harbor and the beach for a little daddy-daughter bonding. Morgan had fun playing arcade games, going to the toy store, jumping a few waves and sharing a strawberry ice cream cone with Daddy. Ally and I hung out here and scrubbed the bathrooms and the kitchen (well, I did while she played and napped.) Today we all went to see "Chicken Little." I must say that I was somewhat disappointed and really did not like the alien-twist. It also didn't have the "magical" quality nor the humor that you come to expect from Disney films. However, Morgan seemed to enjoy it (which is the most important thing) and we had fun sharing popcorn and being together!

Allyson is appointment-free this week, although I may take her to see Dr. Huang tomorrow if her cough/cold symptoms persist. She's been a little congested and has had a small cough at times for the past couple of days. Of course, I was a little under the weather about 10 days ago and Mark wasn't feeling well Thurs. and Fri., so I'm not surprised if she's a little bit sick. We're keeping an eye on her symptoms and hoping she'll clear up without antibiotics, but we don't wan to chance anything either with her hand surgery just around the corner.

Hope you all had a nice fall weekend. Thank you for your continued thoughts and prayers.

Kristin

Thursday, November 3, 2005 3:57 PM CST

Hello there! Hope everyone (and their children) have come down off their Halloween-high! We've packed up the jack-o-lanterns and decorations until next year. Now it's time to focus on Thanksgiving (not Christmas just yet, Aimee!).

Allyson had two doctor's appointments this week. On Tuesday, we saw Dr. Wright, the Orthopedic Hand Specialist. She took x-rays of both hands and was pleased with her bone structure in both. Ally's left hand has the conjoined fingers which will be separated. The bones of fingers (fourth and fifth digits) are connected at one point (right where the fingers extend from the hand). The bones will be cut apart at that point. Dr. Wright suspects that the tendons are probably joined at that point as well. This is GOOD news as she once thought that there was one tendon stretched across the two bones. The surgery will last about 2 hours and she'll have a full arm cast for five days following the surgery. After that, Allyson's hand will be wrapped with a soft bandage for a few weeks. A skin graft will be taken from the underside of her wrist (same hand) and used to complete the pinkie finger. The only BIG news we received was that her surgery has been rescheduled from Nov. 17th to Dec. 1st. The two week shift was necesssary to accommodate other patients with more emergent medical needs. Initially, we were asked to reschedule until February or March 2006, but because of Allyson's palate surgery already scheduled for Feb 1st, we were able to slide into the Dec 1st slot. Anyway, it's a minor bump in the road, but we're handling it!

On Wednesday, Allyson had an appointment with Dr. See, her Gastroenterologist. Dr. See was very pleased with her weight gain and growth. Allyson is now a whopping 19 pounds, 4 ounces and 27 inches long. Her weight is up to the 38th percentile and her length is at 15th percentile. Not bad for a baby who "fell off the chart" 8 months ago! Anyway, Dr. See recommended that we increase her rate on the feeding pump and try to reduce the time of her overnight feeding. We're also changing her oral baby food feedings to 10am and 4pm with a g-tube feeding immediately following. The goal is for Allyson to experience "hunger" prior to the oral feeds so that she'll be more accepting of the baby food. Yesterday afternoon the plan worked and she ate an entire jar of squash at one sitting! Usually she would only eat 1/3-1/2 jar per feeding. Our next appointment with Dr. See will be in January just before the palate surgery.

Ally's therapy sessions have been going well this week. She's "itching" to crawl and turns her body and gets up onto all fours all the time. She actually "crept" a little bit yesterday with JanDee. She was supporting Allyson's stomach while Ally moved her arms and legs slightly forward! Hooray! With the shift in her surgery date, our goal is to have her crawling before Dec. 1st. I'll keep you posted!

Thanks for keeping us in your thoughts and prayers. I was thinking recently that it's hard to believe that this journey began almost a year ago. What a learning experience this has been for all of us! We couldn't have made it through all the ups and downs without your support. Thank you so much!

Love,
Kristin

Tuesday, November 1, 2005 10:29 PM CST

Hope everyone had a wonderful Halloween! The home page photo is of the girls on Halloween morning wearing their FIRST costumes of the day. Morgan was the cutest Barbie Fairytopia at her preschool and pranced through the parade waving to the bystanders. Ally got lots of "oh how cute" comments in her mini Minnie get-up.

We went trick-or-treating with friends, Parker (aka Batman) and Ian (aka Buzz Lightyear). Morgan was the leader (of course) and kept telling Parker to "hurry up" and pointing to houses with their lights on and saying "I think that house has candy, let's get some!"

When all was said and done, everyone had a blast and Morgan ate just ONE piece of "school" candy before trick-or-treating and ONE piece afterwards. She hasn't touched it or mentioned it since... I swear! :-)

Allyson met with the hand orthopedist today and has an appointment with Dr. See (GI) tomorrow. I'll update the news of both appointments tomorrow afternoon.

Have a great night and HAPPY NOVEMBER!

Kristin

Monday, October 31, 2005 0:17 AM CST

HAPPY HALLOWEEN!!!!!

Since Minnie Mouse is a favorite in our house, Allyson just HAD to follow in her big sister's footsteps and start her own infatuation with Miss M.M.

Here's "mini Minnie" all dressed up for the costume parade at the Farmer's Market on Sunday. Morgan went as Cinderella. On Monday, Morgan will be Fairytopia (Elina) during the day and Sleeping Beauty at night for tricj-or-treating. I THINK this is the final costume decision!!!!

Have a safe and happy day!

Love,
Kristin

Saturday, October 29, 2005 12:32 PM CDT

Hi! Just thought I'd share Cat's post on Cleft Advocate about Darren's surgery. All is well - sounds like the surgery went GREAT and Darren is recovering as expected. Thanks for keeping them in your thoughts.

"We're finally home from the hospital now, but nearly stayed an extra day as our little guy is so stubborn and wouldn't let anyone near his mouth for liquids. Would only take solids... Now we're able to get liquid in him, but only via syringe. Prior to last night though, it was liquid soaked into some gauze and drizzled onto his lips....talk about a trying time. lol. He also gave the nurses a run for their money. He was such a stinker to them, and had them laughing the entire time he was awake.
His lip revision looks great, and his surgery was a "textbook" case. Docs said that it went beautifully, and we're ecstatic with the results (both lip and flap). He said that the flap was definitely needed. Monday is post-op appmt and we go from there.... He not only sounds different, but even some words are clear. It's amazing. :) So far, we haven't dealt with any sort of problems with sleep apnea. Docs said that we'd be able to tell right away if he was going to have some problems, and so far, we're in the clear.... but guess only time will tell as the swelling goes down..."
~Cat


Friday, October 28, 2005 11:16 AM CDT

Hello to all on the eve of this Halloween-ish weekend! I know there's been banter in the guestbook about putting up Christmas lights, decorating Easter eggs, and setting off firecrackers, so I'm wishing everyone a happy weekend no matter which holiday you're planning for! (Sorry, English teachers past and present, about ending that sentence with a preposition!)

Anyway, we've had a pretty good week despite ME feeling a little under the weather... I've been struggling with a fever, chills/sweats, sore throat, and aches since Tuesday afternoon. Today I've added congestion and sneezing to my list of symptoms. Anyway, I feel "okay" on and off throughout the day and pretty crummy at night and first thing in the morning. I'm popping Advil and cold medicine, so hopefully, I'll shake this bug soon! I'm trying to be careful around Allyson so that she doesn't catch whatever it is that I have! Keep your fingers crossed for that!

Allyson has been doing well with therapy this week. She's shown improvement in getting herself into a sitting position (from lying on her back) using her right side. Until now, she's only been able to "get up" using her left arm to push up. She's not quite there with the right, but is doing better. Ally also impressed us with gettting back into a sitting position after being up on all fours. That's another "new trick" for this week! Her therapists at the center commented yesterday that she changes so much from week to week. They even took some video of her to capture her successes!

Morgan is getting excited about Halloween and keeps asking me "how many more days." She went on a school field trip to a pumpkin patch yesterday and got ANOTHER pumpkin to add to the "patch" growing on our front steps. She named this pumpkin "Savannah" after her best friend (at least for this week) at school. We're planning to decorate Savannah, the pumpkin, tonight and Mark and I will finally carve our Mommy and Daddy pumpkins we selected a couple of weeks ago. Like Tyler, Aimee's son, Morgan is probably going to wear two costumes on Monday. I think she's going to be Fairytopia for her school parade and party and Tinkerbell for trick-or-treating. However, we probably won't know for sure until Monday morning when she's getting dressed for school.

Have a great weekend! Thank you for your continued support for all of us and those who mean so much to our family. We love you all!

Kristin

P.S. I have not heard how Darren is doing since his p-flap surgery on Wednesday. I'll post something (or Crystal will) as soon as we hear from Cat. Thanks for keeping our friend, "D", in your prayers!

Tuesday, October 25, 2005 12:54 AM CDT

Hello all! Please keep Darren Potter, our EEC friend in Hawaii, in your thoughts and prayers this week. He is having p-flap (pharyngeal flap) surgery on Wednesday and will be in the hospital for several days. This surgery has been in Darren's future for awhile, but was only recently scheduled (and quickly!) I've copied some info about the p-flap so you guys know what we're talking about here.

Send lots of "white light" (his mom, Cat's, favorite phrase) towards Pineapple Land for Darren Potter this week! Thanks!

Pharyngeal Flap Form


INDICATIONS FOR A PHARYNGEAL FLAP
Despite an adequate palate repair, a small number of children may have difficulty with their speech. The soft palate and pharyngeal muscles should work together to form a seal, which closes off the mouth from the nose. This prevents air from escaping through the nose during speech. You may have noticed a nasal quality to your child’s speech, particularly with /p/ and /b/ sounds. This may mean that air is leaking through the nose during speech and that the muscles are not functioning properly. This is called velopharyngeal insufficiency, or VPI.

ABOUT THE SURGERY
A pharyngeal flap is a surgical procedure to correct or enhance the quality of your child’s speech. This is usually done between the ages of 4-6 years of age. Muscle tissue is transferred from the back of the throat or pharynx to the palate in order to narrow the nasal opening. This should enable your child to have a more normal sounding voice and increase his/her communication skills.



Sunday, October 23, 2005 10:18 AM CDT

Good afternoon! Well, I've attempted to update this journal a couple of times over the past two days, but I've gotten interrupted for one reason or another... I'll write this in bullet format (as I did in my notes) and highlight each meeting with the specialists.

** Audiologist - we met with her and she checked Allyson's ear tubes to make sure they were clear by forcing air into them. Allyson didn't seem to mind it at all. She'll do a hearing test in February. It's standard procedure to check her hearing between 12-18 months old, although we don't suspect that she has any deficiencies.

** Speech therapist - we reviewed the sounds that Allyson makes... "m, n, b, f, w" and her "verbalness" in general. The ST thought that she was on track fro her age. She encouraged us to work on mimicking with Allyson and getting her to copy words/sounds we say.

** ENT - she didn't see her regular ENT rather the staff doc who was working with the team on Thursday. He checked her ears, tubes, mouth, etc. and said that everything looked good. No infection or signs of problems. I asked in about her right nostril that bleeds fairly often. He explained that the skin separating the nostrils is exceptionally skin - first because it IS naturally, second because it's been constructed through surgery, and third because of Ally's ectodermal dysplasia. He said to keep it moist with vaseline (i.e. shove a mound of it up her nose as often as possible, but especially at bedtime) or use saline nose spray. This is the "conservative approach" and if we can keep it moist, the skin with thicken over time and not break down every time she has a big sneeze or has food irritate the area. The next step would be to cauterize the blood vessels when she’s under anesthesia. I didn’t think about it at the time, but this could possible be done during her palate surgery in February – of course, this is just ME thinking, we didn’t discuss this with Dr. Reinisch yet.

** Dentistry – we saw all the folks that we a part of our lives during the whole NAM process. The dental assistants were thrilled to see us and were amazed at Allyson’s transformation. This was the first time they’d seen her since her surgery. We talked a lot about Allyson’s future teeth and how they may or may not form nor may they form correctly. Generally, the dentists don’t do “much” until about 3 years old. By then, we should know what teeth she has and how they’re functioning. We had a pretty lengthy discussion with both the dentists and orthodontists. The bottom line is that they will attempt to utilize whatever teeth she has. If there are missing teeth, she’ll be fitted with partials. If some teeth are pointy (conical), they’ll be bonded. That was basically the “jist.” In general, there won’t be a lot of teeth removed as long as their root system is strong.

** Nurse Manager – this was a meeting with Pat McKee who has served as a liaison for Allyson’s care since early January. She covered general health questions and emotional well-being. Pat is such a sweet lady and seems to care a lot about Allyson and our family. She was delighted to meet Morgan for the first time and Morgan reciprocated by telling Pat that she had the best toys out of all the rooms we’d been in.

** Plastic Surgery – we met with Dr. Reinisch who examined Allyson’s lip and nose. He continues to be pleased with the results of her surgery. He commented that her scar appeared “thick”, but added that it generally takes between 2-12 months post-surgery to fade and minimize. We took that as good news! Her palate surgery is still set for Feb. 1, 2006 and we’ll see Dr. Reinisch again just before that surgery.

** Developmental Psychologist – our final meeting was with Dr. Susan Miller who talked with us about Allyson’s cognitive development and how we were functioning as a family. She was quite complimentary of us and everything that we were doing “right” as far as Ally is concerned. When she asked how Morgan liked having a little sister, I shared some stories about how Morgan explained things to her preschool classmates when they inquired about Allyson’s lip or nose or fingers. We could tell that she was pretty impressed with how we all handled things and commented that she wished that I could come talk to parents of other patients. I smiled and said, “well, I DO need a job…” ;-) hee hee

So that was our 4 hours with the craniofacial team! Morgan was great throughout the morning and played in the various waiting rooms, shared crayons and paper with other children (some patients, some siblings). She asked questions when Allyson cried while being examined, but generally did well. We concluded our day at CHLA with lunch at McDonalds and listened to a volunteer read us a story in the main lobby. Needless to say, Morgan didn’t want to leave the hospital!

Our weekend plans of going to the Air Show have been snuffed out by cloudy weather. The family day gathering at Mark’s squadron was fun on Friday, even though we didn’t get to see any planes flying because of the “low ceiling.” We did see two of the solo Blue Angels flying overhead as we were driving home. I pointed them out to Morgan and she said, “those aren’t angels, those are airplanes.” I attempted to explain that the airplanes were called angels because they flew in the sky like angels did. After pondering that for a moment, she asked, “are there angels inside those planes?” I smiled and said, “yes, I bet there are.”

I think we all have felt angels in our presence at one time or another. I’m certain that they fly alongside pilots and navigators both in the military and commercially so that they will be safe in their travels and their jobs. Who knows? Maybe John McKay, one of God’s newest angels, was seated on the shoulder of one of those Navy Blue Angel pilots on Friday afternoon. I just bet that a former USAF pilot could offer some comforting reassurance to them as they took to the foggy skies over Point Mugu, California.

I’ll sign-off as you ponder my last thoughts… Hope you’ve been enjoying your weekend and spending it with those you love.

Kristin

Tuesday, October 18, 2005 12:36 AM CDT

Greetings from mudslide land! Yes, that's the latest in natural diasters occurring in southern California. No, we're not affected by them - just "enjoying" (ha!) a couple of days of rain. Of course, the sun has just emerged as I'm typing this, so maybe our wet weather is over for now.

As you can see from the new pictures, we were Halloween-minded this past weekend. We visited a local pumpkin patch on Saturday. Morgan carefully chose a pumpkin for each of us, we enjoyed a bouncy hayride around the farm, and peering through the eucalyptus trees to see the crops growing below. Allyson seemed to enjoy her first trip to a pumpkin patch and fell asleep before the hayride was over!

Morgan had a playdate Sunday afternoon with her friend, Keara, who lives down the street. I walked her to Keara's house around 2:15 and she didn't come home until 6:00! I guess it's safe to say that she had a good time! They played dress up, colored, painted AND carved a pumpkin, ate bagel bites and french fries. She was thrilled at the chance to be a big girl and play at her friend's house all by herself. While she was gone, I met with our squadron's spouses club and planned upcoming activities for our group. This was the first time the wives had gotten together since the squadron returned in July, so it was great to catch up with everyone. Mark and Allyson enjoyed their one-on-one time and they both did their exercises and watched football together! It was a good weekend for us all.

Allyson has a couple of appointments this week. Today we will meet with the Orthopedic doctor that consults with the local therapy unit. He will work in conjuction with her orthopedic docs at CHLA. He will evaluate her this afternoon and determine whether he thinks resting splints are needed for her feet/ankles. I'm not sure what else he will do... I'll probably do most of the talking by informing him about her medical history and prognosis.

On Thursday, we will ALL travel to CHLA for Allyson's BIG craniofacial team appointment. This is when she'll see ALL the doctors on the team. The Craniofacial Center brings together geneticists, audiologists, speech pathologists, reconstructive plastic surgeons, neurosurgeons, ophthalmologists, otolaryngologists, psychologists, social workers, pediatric dentists, orthodontists, oral surgeons, prosthodontists, and specially-trained nurses. I'm not sure exactly WHAT the appointment will entail other than evaluating and "charting" Allyson's progress thus far as well as talking about the future. I DO know that she has a scheduled appt with her ENT to check her ear tubes and have a hearing test. Our appointment day begins at 8am (so we'll probably leave the house by 6am!) and usually goes until 2 or 3 in the afternoon. I'm sure I'll have plenty to report on Friday!

Morgan has her first gymnastics class this afternoon. She seems excited about it and made a picture for her gymnastics teacher. I told her I would pick her up early from school so we could have a snack and change clothes before her class. I'll try to take some pictures to post as well!

There's a Blue Angels Air Show at Point Mugu this weekend. There's a squadron picnic on Friday and we'll be able to see the Blue Angels "practice" performance. Mark is working on Saturday afternoon and will give tours, briefings, etc. about the E-2C aircraft. I'm not sure if the girls and I will go to the show again - we'll see if the rain stays away for good! Maybe we'll invite Keara to come play at our house one afternoon.

Thank you for your continued to support and love for our family. It's always appreciated!

Also, your prayers for John McKay's family are appreciated as well. I know that Holly and Charlotte will "feel the love" that all of Ally's supporters can provide them. Teetay will be traveling to Austin, Texas, on Wednesday night to attend John's funeral on Thursday. Please keep them all in your thoughts!

Love,
Kristin

Sunday, October 16, 2005 10:43 PM CDT

Hello all. With a heavy heart, this is just a brief update to let you all know that our dear family friend, John McKay, passed away earlier this evening. I know that many of you have been praying for John over the past months as we've mentioned his challenges with battling lung cancer on Allyson's website. John's daughter, Holly, was mine and Ashli's babysitter in Austin, Texas, many years ago. She is also THE REASON we started this site for Allyson.

Please say "extra" prayers for Holly, her mother Charlotte, her brother David and their family as they grieve the loss of their husband and father - a wonderful, generous, charming, and loving man.

Thank you for your thoughts and support for us and for everyone close to us.

Kristin

Friday, October 14, 2005 12:10 PM CDT

Check out the cutest, sweetest witch on the block in Port Hueneme! Geep took this picture on Monday before they went home to Virginia. Hope you have a great weekend! :-)


Wednesday, October 12, 2005 1:53 PM CDT


Hello! Here’s your long-awaited journal update…

Mark and I had a wonderful weekend in Santa Monica. We joked that we “ate our way” through the weekend and enjoyed great dinners, lunches, breakfasts together. We caught a movie Saturday afternoon – our first non-animated movie in months. Of course, we picked a horrible one (History of Violence), as we tend to unintentionally pick really BAD movies when we have the chance to do so. Anyway, we laughed about it afterwards, tuned into HBO and saw a couple of other movies that we’d missed over the years. We “chilled” and read books and took naps. Not a bad time at all!

Our surfing lesson was rescheduled from Saturday until Sunday. The surf on Saturday was really rough and our instructor felt that it would be better for us to learn on Sunday. When we arrived at the beach on Sunday, the waves were a little smaller and a little calmer. We began our lesson learning the fundamentals on surfing and safety on the beach. Then, we hit the water and made our way out past the breaking waves. It wore me out just getting out into the water. I’m not a big fan of diving underwater in the ocean nor do I particularly like waves crashing on top of me. Imagine doing all this while maneuvering a giant surfboard attached to your ankle! Anyway, it was definitely a workout and we began our attempts at surfing. The first few times, we just rode the waves in while lying on the board. Once we felt comfortable enough we were encouraged to try to stand up. I “think” I succeeded once – I don’t really remember as everything happens so fast. Mark said he thought he saw me stand up. Anyway, I mostly rode the board in by lying on it. I was really tired from battling the waves just to ride one in. I had one “wipe out” which left me a little shaken. I let Mark have some one-on-on time with our instructor near the end of our lesson. He was doing pretty well and managed to stand up several time. I was beaten and done so I spent time taking pictures and video of him surfing. All in all, it was a great experience. I definitely appreciate the difficulty involved in surfing and I’m proud of myself for trying something new!

Allyson saw her pulmonologists on Monday and received a great check-up. Her x-rays showed that her left lung is completely healthy and her right lung just has a slight “smudge”, but is much healthier than it was in March. We were also told that we can reduce her albuterol treatments to just twice a day (versus three times). And the best news was that Allyson “has graduated” from the Pulmonary Clinic and does not need to be followed regularly by those doctors anymore. If she starts having respiratory problems, then we’ll return to them in the future. Of course, we were ecstatic about the news!

Yesterday, Allyson had a check-up with her opthamologist. Her eyes are still healthy and he was pleased to see that she was making tears now. He also noticed that she has a nasolacrimal duct fistula which he has not noticed before, although it's been there since birth. While this is pretty rare in general, it's not uncommon for Allyson because of her ectodermal dysplasia. The fistula is a tunnel that connects to her tear ducts. The one in her right eye is open and appears to be working, the one in her left eye doesn't appear to be as open. He said it's not a big deal - it's just one more place that could be prone to infection. So far, she's had just one infection (back in January - remember the red, ghoulish eyes?). We'll continue to give her artificial tears and lacrilube as needed. Nighttime is most critical since we don't make tears while we're sleeping and our eyes are more infection-prone then. Anyway, it was another good check-up!

The rest of our week consists of seeing the therapists at the center on Thursday, followed by lunch with Ashli's friend, Caryn, who is visiting family in Santa Barbara. I also have to make halloween cupcakes for Morgan's preschool bake sale on Friday. If they turn out well, I'll be posting pictures on the website.

Hope you're having a great week! Happy 5th birthday to Tyler, Aimee's son, today! Have a fun Yu-Gi-Oh party on Saturday!

Kristin

Thursday, October 6, 2005 10:59 PM CDT

Hello! Teetay and Geep are on their way to our house right now. They called around 8pm to say they had landed early and were awaiting their luggage. We hope to see them here in the next hour or so!

Morgan was quite excited when we put her to bed tonight. I "made" her promise not to wake Teetay up until she saw that the sun was up, however, I'll bet that a little four-year-old wearing Minnie Mouse pajamas will climb into the twin bed with Teetay sometime before the sun is up! HOW early will that actually be!!!???? We'll update you tomorrow on that one!

Allyson has had a great week. Her oral feedings continue to go well. We've introduced meat/vegetable blends and vanilla custard this week. She still seems to like green beans the best though! She saw three of her therapists this week and all are impressed with her progress. She's able to get into a sitting position (from lying down) on her own now and holding the quadriped position for several minutes at a time. Yesterday, she even did an "assisted creep" meaning she lunged forward to grab a toy while she was on her hands and knees. Hooray!

Tomorrow Mark and I will celebrate our 10th wedding anniversary. I've been fortunate to catch up with a few dear friends via telephone (Dani and Aimee) and e-mail (Beth) this week. Thank you for remembering us as we commemorate our first decade of marriage. With Teetay and Geep "ready, willing, and able" to takeover caring for the girls, we are heading 45 miles down the Pacific Coast Highway to Santa Monica for two nights. We're both looking forward to some much-needed time together. Our plans include dining at Sushi Roku (maybe we'll run into some movie stars!) Friday night and then beginning our day with a couple's surfing lesson Saturday morning - yes, I wrote SURFING and no, I've never done it before! I've already been told that I HAVE to take a picture of us together wearing our wetsuits. Now whether that photo makes it onto Ally's website remains to be seen. :-)

Hope you all have a wonderful Columbus Day weekend. Our constant prayers are with everyone experiencing pain, grief, challenges in their daily lives. I'm in awe of the bonds that have formed because of this website. It's wonderful that our family has grown and touched so many others over the past year.

God Bless You All!
Kristin

Saturday, October 1, 2005 9:02 AM CDT

Happy October! Looks like it's been a "quiet" (or maybe BUSY) week for everyone! Allyson was free of doctor's appointments this week - just therapy! Updates on that will follow...

After starting off the week on Monday with unusual rain, thunder, and lighting, our weather turned "weirder" the next day! For anyone who's watched the news and "wondering"... we are not directly affected by the recent fires in California. However, there was one burning about 30 miles from us and caused evacuations in part of our county. The winds have been strong and the heat has been intense due to the Santa Anas (Anna R., did you know that you had WINDS named after you too???). Anyway, for the past four days, you can smell the smoke in the air and there's a brown haze overhead. I'll post a picture of the sunrise Thursday morning so you can see how odd it looked. There was also some ash falling from the sky and covering the ground and cars. We can't see the actual fires in the distance, but the smoke rising over the mountains was clear from our house. The weather has turned "better" and it is much cooler this morning with a heavy fog - that should help firefighters get a handle on things!

Allyson has had a great week. I had her 9-month portraits taken on Monday. All the poses were great, so I bought a ton! Many of you will be receiving them soon! She also had therapy with Pablo and spent a lot of time rocking back and forth on all fours. She seems to be getting stronger and tolerating "tummy time" a lot more! I have to give a "shout out" to Nanny Sharon who cared for Ally during Ashli's wedding and worked with her diligently on this skill. Thanks, Sharon! :-)

On Tuesday, Allyson and I hung out around the house and I actually got started on her baby scrapbook. I only got a couple of pages done, but at least it's officially started now! Maybe now with all of my "free" stay-at-home-mom time, I'll be able to keep up with Allyson's book and even get back to finishing Morgan's at some point!

Baby food feedings are going GREAT! Allyson has really taken to her green veggies. I think green beans have been her favorite so far. Last night, we tried turkey vegetable and that was well received too. I'm no longer trying any fruits - at least anything with apples or pears. The acidity seems to bother her palate and/or sinuses and Allyson scrunches up her nose and cries when I feed them to her. Since we want this to be a pleasant experience for her and the veggies are better anyway, we'll stick with the bland green stuff. There's also much less coming out of her nose, so we're able to feed her more at a time - almost up to half a jar mixed with rice cereal. JanDee, her OT, also recommended feeding her a twice a day. The more she "practices", the better she'll get. So we're giving that a shot too!

Morgan had a fun week at school. On Tuesday, her teacher introduced them to a couple of the songs they'll be singing at their Christmas program on December. Morgan came home arrived school and happily announced that she had to practice her song for the Christmas program! She sat at our piano and "played" and sung about Jesus and angels. (I learned the next day that the song is Away in a Manger.) Mark and I just smiled and shook our heads when she later asked to cut out angels and candy canes! Sheesh, it's not even Halloween yet and she's already thinking about Christmas! Too cute! I guess that once she had established what she was going to be for Halloween, it was time to move on.

Our weekend is looking pretty quiet... This afternoon we have a birthday party to attend. The daughter of my friend, Toni (who was also my nurse after Allyson was born), is celebrating her 5th birthday with a Spongebob party. Morgan is super excited to go and is already trying to decided which "party dress" she'll wear - it's just 8am and the party isn't until 2pm! We're looking forward to having a good time!

Hope you all have a great weekend. Hugs to you and yours!

Kristin

Sunday, September 25, 2005 12:28 AM CDT

Good Sunday morning to you! That was quite a LONG tea party I attended Thursday afternoon... I'm just now having a chance to get back to the journal update! hee hee

Check out the picture of Ally sipping tea on the photos page. She and Morgan and I had a great time munching on Snackwells cookies with our tea! YUM!

On Thursday night, I attended Back to School night at Morgan's preschool. Her teacher, Miss Mary, took the parents through an entire day's curriculum. We got to play with Legos as we arrived at the classroom, said the Pledge of Allegiance, sang "America", did circle time, listen and learn, paperwork, and math! She skipped over snack, recess, lunch, and naptime - we REALLY would have liked that. It was neat to experience what Morgan does each day, and I enjoyed meeting some of the other parents too.

Allyson continued with "therapy week" on Friday morning with a visit from Pablo and Joanne (PT). Joanne was pleased with her progress (it had been about six weeks since she'd seen her). Her biggest concern is about Allyson's feet/ankles and their tendency to roll outward. Because her big toe naturally is stronger than her pinkie toe (and she doesn't have the other three to balance the "pull"), her feet often rest on the outside edges (supponation). For example, when she's sitting with her knees bent, her ankles roll to the outside and the bottoms of her feet are facing up. My feet actually do this too, but that’s because I’m uber-flexible (or have freakishly abnormal joint motion as Mark would say…). Anyway, Joanne recommended that Ally might need leg splints to wear at night to stretch her legs/ankles into a “straighter” position. She will discuss this with Simone, the PT at the Therapy Unit and coordinate with their on-staff orthopedist. To be continued…

We heard back from Dr. Huang Friday afternoon about Allyson’s lab results. She is borderline anemic which isn’t unusual, he said. He recommended giving her a multivitamin with iron to take care of the issue. So, that’s one more “med” (of sorts) to add to her daily regimen. Hopefully it won’t make her constipated as it did before when we gave her the multivitamins daily after birth.

Mark and I were looking forward to a “date” on Friday. He had the day off and I had scheduled a respite nurse to come. Unfortunately, her son got sick and she wasn’t able to make it. Our regular nurse, Connie, had knee replacement surgery mid-August, so she hasn’t been able to care for Allyson for many weeks now. Hopefully, she’ll be back on her feet again in another few weeks and our routine respite care will return! We went out to lunch anyway (with Allyson in tow!), but decided to skip a movie this go around!

This afternoon we’re heading to dinner at a neighbor’s down the street… new friends that we met at our block party a couple of weeks ago. Their daughter, Keara, is three and she and Morgan have fun playing together. Morgan’s friend, Parker and brother Ian will also be there along with another family. We’re looking forward to it!

Hope you’re having a good weekend as well. We’re so glad that “Rita” packed less of a punch than originally expected and that the good folks of TX and LA are safe and hopefully, returning home soon.

Thank you, as always, for your support for us and those who care about us!

Love,
Kristin

Sunday, September 25, 2005 9:51 AM CDT

Happy Sunday morning to you!

Working on a new journal now...

To be continued... AGAIN!

Kristin

Thursday, September 22, 2005 6:16 PM CDT

Happy FALL - do you like the colorful leaves along the border? They don't exactly "match" the picture of Allyson sitting in her tent on the beach, but I'd thought they'd be a nice greeting for the offical start of autumn.

I wanted to take a minute to update you on Allyson's week thus far. Today, she had her nine month check-up with Dr. Huang. She weighs 17 lbs., 11 oz - 25th percentile woohoo! She's 27 inches long - between 10th and 25th percentile. Her head is now growing proportionally to her body and she's staying on the 95th percentil curve - another woohoo! Dr. Huang was pleased with her progress and loved how much she was smiling and sitting up looking at him. All her vaccines are up-to-date, so she only got a flu shot today. Dr. Huang gave me one as well - no paperwork involved. He said he would give Morgan one also if we couldn't get it on base where she sees her pediatrician. What a loving man he is! He requested that we have a routine lab work up done on Allyson. It's his standard for her age to have blood drawn for CBC, lead, metabolic work-up, etc. So, we went to the lab for that following her appt. Other than fussing while being held down, Allyson did great with that too!

This week has been FULL of therapy too... Yesterday, JanDee (her home OT) was here to assist with oral feeding. She was VERY pleased at how well Ally took to the baby food and was able to manage her swallows. We did over an hour and a half of both oral and physical therapy while JanDee and Pablo were here. We also got Allyson to hold herself in a quadriped (on all fours) position for over a minute. This was a huge accomplishment (and necessary!) prior to her crawling. Thank goodness Allyson had taken a two hour nap prior to their arrival - we were both pretty tired when they left. We saw Rebecca (OT) and Simone (PT) at the Therapy Center today. Again, Allyson "wowed" them with both her eating skills and strength training. It was great!

More later... I'm being called away to attend a tea party!

Kristin

Monday, September 19, 2005 11:10 PM CDT

Well, there may be history in the making tonight. There's less than one minute left in the game and the Redskins are leading 14-13. It ain't over 'til it's over, right???

IF the Redskins should emerge victorious tonight, I will have to blame myself for not dressing the girls in their Cowboys attire tonight! Mark donned his Redskins muscle shirt for awhile this evening - maybe THAT did the trick!

Talk about the improbables of all improbables...

Like Teetay says, "it's just a game... on any given Sunday (or Monday), one team wins and one loses."

I'll suck it up and pretend I'm not bitter - even though the LAST time the Skins won in Dallas it was the Sunday before Mark and I got married! I almost cancelled the wedding because of it... I guess we've come FULL circle in the past ten years. ha ha :-)


Mark says he isn't going to post in the guestbook, but he wanted me to share his thoughts with all the "doubters" out there. "Told ya so!"

Have a great night! Let the rivalry live on!

Kristin

Thursday, September 15, 2005 9:31 PM CDT

Guess who ate peas and applesauce for dinner tonight? That's right, Ally did!

We got the "green light" from Dr. Yuan this afternoon to start some "token" oral feeds (this was the language used in the OT's report following the swallow study). We successfully got Allyson to eat 5-6 small spoonfuls of peas and about the same amount of applesauce as well. She had some come out of her nose (which is to be expected with the cleft palate) and mouth. When she started to get fussy, we stopped... We have to ensure that this is a positive experience for her and our goal is not to sustain her nutritionally through the oral feeds... so FUN we shall have!

And more good news... Allyson had GREAT therapy sessions both with JanDee yesterday and at the Therapy Center today. Woo-hoo! I rewarded her with the purchase of a Halloween costume. She's going to be the cutest little cow in Port Hueneme on October 31st... now, if only Morgan would make up her mind that easily!!! Purple Princess or Pink Ballerina or Dorothy or Rockstar Girl or Pink Princess or Purple Ballerina... ah, decisions, decisions!

Have a great Friday!

Kristin

Wednesday, September 14, 2005 12:51 AM CDT

Good morning! Since it's mid-week, I thought I retreat from the football banter, pictures, etc. Although "it's" sure resume this weekend!

We've had a good week so far... Allyson and I met up with neighbor, Adrienne, and her son, Ian (almost 2) at the park yesterday. They went down the slide side-by-side and you could see Ian's surprise that a BABY could slide like he could! Morgan's having another good week at school and has spent each afternoon this week splashing in her baby pool on our patio (even though it's been a little chilly for that!). She also makes "I love you" cards each morning to take to her teachers. They love their cards and she loves the hugs she gets in return.

Allyson resumes Occupational Therapy with JanDee later this morning - we've had a two-day break from Pablo's visits this week. We're still awaiting a call back from her pulmonary docs about starting the oral feeds. We need their "blessing" before we begin. The pantry shelves are stocked with baby food as soon as we get the "greenlight".

Anyway, that's the quick update for this morning. Although I know there are still lots of people reeling from Katrina, please keep Mark's parents in your prayers as they are in Ophelia's path as she hits North Carolina today. The did NOT evacuate, but are at home with provisions and prepared for the wind and water levels. I'm not sure if they still have power - I've seen on the news that 35,000 in their county (Brunswick) are without power right now. We'll keep you posted (or they will via the guestbook) when we hear from them!

Thanks and have a great day!

Kristin

Sunday, September 11, 2005 12:06 AM CDT

This is for TER-REEE... Ally is EXTREMELY HAPPY wearing her Cowboys' jersey. No burgandy and gold "relief" needed here! Thanks anyway!

Now I've really seen it all...

Bets and wagers being discussed on Ally's website??? What is this world coming to?? hee hee :-) I'm glad that football frenzy has swept the nation (and the caring bridge website) this week. You never know who's going to sign the guestbook or what kind of discussion thread will get started! That's the beauty of what we started here! And just for the record, there are three COWBOYS fans in this house and one just REDSKINS fan... No doubt there will be silver stars shining here this afternoon!

Speaking of football... as excited as we are about the NFL season, those of us who follow COLLEGE football (like we do in this household!) saw some great games yesterday. Way to go, Longhorns, for stomping into the horseshoe and emerging victorious! Sorry, Uncle Josh (and Dani, Bree, Andy - the PA Derr family), that "go blue" couldn't get it done against the Irish. And congrats to the LSU tigers who played their "home" opener in Tempe, AZ, and brought much joy to the fans in their state with their win last night. Of course, if UVa had played yesterday, then I'd be highlighting THEIR win as well. And how about all those ACC teams in the top 25? Not bad for a "basketball conference"...

Well, I've certainly digressed now... let me get back to the REAL purpose of this page and update you on Allyson's events of the week.

We saw Dr. See on Thursday who reviewed the results of her August 2nd endoscopy. While there are signs of esophagitis (inflammation due to reflux), Dr. See said we can continue to treat Ally's symptoms with medication. Because the reflux does not seem to cause her any pain or discomfort while on medication (Reglan, Prevacid, and Zantac), we'll continue to monitor it. Once she's eating orally again, hopefully her symptoms will improve and/or go away. Dr. See is still a big proponent of having the fundoplication done at some point, but it is not essential to Allyson’s current health.

Yesterday, we had an appointment with Dr. Reinisch and Dr. T at CHLA. They continue to be pleased with the healing of her lip. While her nostrils are still “wide” (Dr. Reinisch’s word), he wants to wait until Allyson’s older to do a nose revision. He suggested that it is best to let her grow and see how her nose/nostrils develop as she gets bigger. We will see them again at our Craniofacial TEAM meeting on October 20th. Her palate surgery is still slated for February 1, 2006. As fast as time is flying, that date will be here before we know it!

The four of us had a fun Saturday afternoon at our neighborhood block party. This is the first year we’ve attended this annual event and it was great! Morgan jumped her little legs off in the jolly jump and Mark and I enjoyed meeting new neighbors and getting reacquainted with old ones. Allyson smiled at every new face and was as content as could be throughout the afternoon.

I hope you’re all having a great weekend. Let us not forget those who made the ultimate sacrifice four years ago today… and all of those who continue to serve and ensure our freedom. GOD BLESS AMERICA!

Love,
Kristin

Wednesday, September 7, 2005 9:14 PM CDT

GREAT NEWS TODAY!!!!!

Ally and I went to CHLA for her OT eval in preparation for her swallow study. Well, after the eval (which lasted about 30 minutes), we slid into an opening an had the swallow test done today! ALLYSON DID GREAT!!!! She had applesauce, rice cereal, and formula mixed with barium (yum!) and I fed it to her with a spoon. Fortunately, I had taken the spoons that we'd been using with the extracts during our home therapy sessions. Allyson is familiar with them and had recently begun to "anticipate" by opening her mouth when the spoon was coming towards it. She swallowed "well" when tested with the three different consistencies! The OT at CHLA is recommending that we begin feeding her baby food - probably "stage 2" foods since they're a little thicker which is easier for Ally to handle. I was so excited that she "passed" this test that I cried (and that's something I rarely do)! The thought of being able to sit her in a high chair and feed her baby food with a spoon makes me so happy! It's a glimpse of "normalcy" (although I don't like using that word) and gives us hope that MORE will follow! Mark was speechless on the phone when I called to tell him - it's almost unbelievable after all she's been through! We still have to wait for her Pulmonay Doc to sign off on the order, but things are moving in the right direction. We'll probably start by giving her a little baby food each day and gradually decrease the amount of formula she gets through the tube. She'll continue to have the g-tube until after her palate surgery (when another swallow study will be required). Over the next five months, I hope to give her the "bottle equivalent" through the tube and everything else by mouth. This will be an ongoing process... and of course, you'll be kept up-to-date on what's going on! Anyway, when the OT was walking us out, she said that these results were highly unusual. Typically, a child that hasn't been feed orally for almost six months rejects the spoon (or other feeding device) and doesn't perform well during the swallow study. It usually takes a couple of tries before "other kids" pass. She complimented me/us on all we've been doing to help Allyson orally and said that we were directly responsible for how well things went today. Of course, Pablo and JanDee (our home OT) will be thrilled as well. They deserve a lot of credit too!

Tomorrow we'll see Dr. See and find out whether there will be gastro surgery in Allyson's future. She's doing much better (spit-up wise) since she's been on Prevacid, but she still shows signs of esophagitis and has delayed gastric emptying...who knows what we'll do... Maybe we'll have another day of good news after seeing Dr. See. I hope so!

Just wanted to share this latest NEWS! It is a REALLY BIG DEAL to us!

Hope you're having a great week... especially everyone who started back to school on Tuesday. Glad to hear that Teetay's year is off to a great start and that the new high schoolers - Christina, Allie, Meredith, Sarah, Lindsay, Mandy - are adjusting well. Twenty years ago, I met two of my best friends (and they still are...Aimee and Beth) during my freshman year of high school. It really IS one of the best times of your life! Make everyday count!

I'll end on that note... more later this week!

Kristin

Sunday, September 4, 2005 9:47 AM CDT

Good Sunday morning to you all! I share the sentiments expressed by Alex, Anna, and Teetay in the guestbook. I know that we all can't help but be affected by the images plastered all over the news and feel the sadness and despair of everyone displaced, dismayed, and desperate - it is a tragic turn of events that will permeate our country for a long time to come. Thank you for keeping our friends from New Orleans, Susan, Jim, and Elena Hynes, in your thoughts and prayers. Also, Mark's brother, Glenn, is flying missions over the area in support of the search and rescue efforts. His reserve E-2 squadron, VAW-77, is stationed outside of Atlanta. Glenn commented that these missions are "much more difficult" than the ones he flew over Kosovo during their war. I'm certain that the supporters on this website have/will respond and help in their own way. Thank you for that!

On a lighter note, we are enjoying our long weekend together here! We kicked it off with a trip to the beach Friday afternoon. Allyson slept peacefully in her "baby cabana tent" and Morgan took to the waves and sand. Mark was hoping to catch some waves on his boogie board, but the waves were "weak" and not worth riding. We hope to return to the beach today for a picnic and (hopefully!) wave-riding for Mark. I think Morgan would get a kick out of seeing him in the ocean!

Yesterday, the girls and I walked to the park for a picnic. Although the sun was shining brightly, there was a slight breeze which made for nice "walking weather". Of course, by the time we arrived at the park, the breeze had subsided and we had all worked up a sweat! Morgan was a trooper and played happily after our picnic. She only complained about being tired a couple of times while walking home. Later in the afternoon, Uncle Josh came over and Morgan and I made a Winnie the Pooh cake (see photos page). She found this "recipe" in her Disney magazine and thought it would be cool for us to make. It was!

Allyson has had a good week. She had therapy with Pablo on Tuesday and Wednesday. We went to the Therapy Unit on Thursday and she saw the OT, JanDee (who works with Pablo), on Friday. She is sitting up on her own very well and can balance herself when reaching forward and to the side. We're continuing to work on her reflexes when falling to the side or back by encouraging her to bear weight on her arms. She did great during all her sessions this week and everyone was impressed with her progress - especially after taking a two week "break" while on vacation! We've also been working on oral stimulation and Allyson is starting to voluntarily put objects into her mouth. This is a big step forward in our efforts to get her comfortable with feeding devices which will lead to eating by mouth down the road... at least that's the plan!

We have three trips to LA planned for this week in addition to her therapy sessions. On Wedneday, we'll see an OT at CHLA for a consult prior to her Swallow Study. Even though we have an order to have the study performed, we still need an OT eval at CHLA before executing it. The Swallow Study should follow a week or two later. On Thursday, Ally has an appointment with Dr. See (GI) to discuss treatment options based on her endoscopy results. Next Saturday, we have a follow-up appt. with Dr. Reinisch and Dr. T to check the healing of her lip and nose. So, after a somewhat "easy" schedule this past week, we'll be back to the LA grind this coming week! I'll keep you posted about appointment recaps as the week goes on.

Hope you have a good Labor Day weekend. Our heartfelt thanks goes out to all of you who continue to follow Allyson (and us) on this journey!

Kristin

Tuesday, August 30, 2005 9:06 AM CDT

Good morning! We returned home Sunday afternoon after a smooth and uneventful flight. The girls were great travellers (again!). Allyson took a long 2 1/2 hour nap right after the plane took off. Morgan and I made three trips to the bathroom, ate snacks, and watched DVDs while Ally snoozed in her carseat. As luck would have it, Morgan promptly fell asleep 5 MINUTES after Allyson woke up! So much for "Mommy rest". Of course, Allyson awoke needing a diaper change, but with Morgan asleep with her head in my lap, I wasn't able to get up. So, being the innovative person that I am (actually I had done this before when Morgan was a baby!), I proceeded to change Allyson's diaper right there on the tray table. Morgan never awoke and Ally was a much happier camper after that!

Yesterday I spent most of my time unpacking, doing laundry, and recovering from our travels. Both girls were a little restless overnight and awoke at different times. Morgan's "body clock" told her that it was time to get up at 4:55 AM! It's strange how my "body clock" told ME to keep sleeping!!! Anyway, she went to school cheerfully and started telling her friends about our vacation as soon as she stepped into the classroom. We all reenergized ourselves with a trip to the beach park yesterday afternoon. Morgan eagerly jumped over the waves and Allyson watched us splashing in the ocean. We capped off the day with a bubble bath that Morgan and Allyson enjoyed together. This was the first time they've bathed at the same time - both of them loved it!

Today we'll see Pablo and resume our home therapy visits. On Thursday, we also start seeing a PT and OT at the local therapy unit. Pablo's sessions will continue as well and all the therapists will coordinate their action plans for Allyson.

Next week, we have a couple of LA appointments. It seems like forever since I've done that drive... can't say I've missed it though!

Hope you're having a great week as summer winds down. Thank you for thinking of us and keeping us in your prayers!

Kristin

Saturday, August 27, 2005 3:22 PM CDT

THE LINK TO WEDDING PHOTOS IS BELOW!!!!!


Hello! Sorry for posting pictures earlier this week without a new journal entry to go along with it... I thought it was "there" before we left for Lake Anna, but somehow it disappeared...

By now you've read the guestbook entries from Teetay, Ashli, Mary Kay, and many others who celebrated Ashli and Tom's wedding with us last Saturday. It was a wonderful, amazing, heartfelt, joyous, etc., etc. event. Ashli was stunningly beautiful and Tom was dashingly handsome ... I can't remember the last time Mark and I enjoyed so many continuous days of good ol' fun! Morgan and Allyson were terrfic throughout the weekend filled with lots of activities and visits with family and both old and new friends. "Amazing" isn't a strong enough word to sum up the emotions we all felt!

I was fortunate to visit with two friends on Tuesday after the wedding. The girls and I had a playdate with Alex Hurley (a website regular and former co-worker whom I hadn't seen in nine years!) and her sons who are the same ages as Morgan and Allyson. We also got together with my dear friend for 20(!!) years, Beth Lutz (a loyal website follower who doesn't post much :-)), and her son and daughter. It was so good to see both of them and the kids had so much fun playing together!

The girls and I and Teetay and Geep spent two wonderful days at Lake Anna (compliments of Dad's friends, The Halladays - THANK YOU Bill and Lynne!) mid-week and it gave us all some much needed "down" time. I spent last night with Ash and TG and celebrated their friend's birthday at a Georgetown hotspot. The newlyweds were refreshed from their "quickie" honeymoon to the Chesapeake Bay. Tomorrow Morgan, Allyson, and I depart for California (Mark returned last Monday) ... and of course, we will be missing our VA and DC peeps! Our family has grown by leaps and bounds "officially" and we're already looking forward to spending time NEXT summer with our PA peeps/family (formerly known as TG's sisters, etc). Everyone associated with Ashli and TG has blended together so seamlessly... from sisters and brothers-in-law to newly formed bonds of "cousinship" (imagine central Texas cousins meeting Philly "mafia" cousins) to groomsmen who were TG's fraternity brothers at Penn State to bridesmaids who reside in California... I could go on and on...the bottom line is that "it's ALL good!"

Ashli did a wonderful job planning and executing every detail of her wedding. I cannot express how much I admire her and love her... and especially how proud I am to be her sister. In the midst of all her wedding "duties", she still had time to make me and Morgan and Allyson and Mark feel special. That's just the kind of person she is... selfless in every way and oh so giving. If there's anyone who did not feel the love that enveloped our families last weekend or didn't experience the euphoria in the air, then you missed out on a once-in-a-lifetime experience. Many who shared in Ashli and TG's wedding day have been quick to send eloquent thank you notes to my parents expressing their deepest gratitude for having been a part of it. Again, we are so greatful.

Ashli continues to give of herself while we enjoy our last few days here. She's spending the night here with us at Teetay and Geep's house (on her one week wedding anniversary!!!) and I'm sure we'll stay up late remembering all the special, funny, crazy, wonderful moments from last Saturday night.

Enough from me for now... there's a huge suitcase that needs packing... a task I am dreading!

Thank you, as always, for being a part of this journey and our lived. Once I'm back in California, I'll resume with "Allyson updates" and recaps of doctor's appointments and therapy sessions. Afterall, it IS her website, but of course, it has grown into much more than that. For now, let us relish in this "break" from all of that "stuff" and celebrate the joy we hold in our hearts!

Hope you're having a great weekend... weather it's rainy or sunny or whether you're moving (Aimee and Jim) or staying put, wrap your arms around your loved ones and hold on tight! It doesn't get any better than this!

Love,
Kristin

Wednesday, August 17, 2005 4:27 PM CDT

Hello all! We've had a busy week thus far after arriving in Virginia Saturday afternoon... Our travels went well and were uneventful. The girls are so great on the plane... I think they (we) always surprise our fellow passengers!

I've been able to "help" Ashli get the final details organized this week. She's such an organzied bride that there hasn't been too much to do. I've enjoyed tending to my matron of honor duties where I could.

Allyson and Morgan have had a wonderful time here at Teetay and Geep's house. They've visited Teetay's school (where Ashli and I were both students 18-20 years ago!),swam in Pam's pool and hung out with some of Teetay's friends, went to Teetay's mall with the airplane-themed play area, etc., etc. There hasn't been a dull moment yet and the REALLY exciting stuff is still to come! Today Ally and Morgan got to see Christina and Lizzie Knippler and their mom at Teetay's house. They are website "regulars" and all three Knippler "girls" got to hold Allyson and play with Morgan. My Aunt Katie and Uncle Ken from Texas arrived this afternoon, so the guests are in town... no backing out now! ha ha :-) Tomorrow we'll check into "wedding central" (aka the hotel in Arlington), which will be our headquarters for the next four days. Mark arrives in the morning, so the CA peeps will be "whole" again. He told me that our house has been way too quiet these past few days and that he's been bored with nothing to do! Gee, wouldn't that be nice?!?!?

This (somewhat blurry) picture was taken of the bride and groom to-be as they opened gifts on Sunday. The house of Matus-George will official form just two days from now! Thank you for keeping up in your thoughts as we celebrate this wonderful occasion and welcome the George family OFFICIALLY into our own.

Kristin

Saturday, August 13, 2005 0:43 AM CDT

We're OFF!!!! Almost... Our flight departs in a little more than 10 hours from now. We are ready to go!!!!

Aside from my suitcase (yes, just ONE for the three of us!) weighing approximately 500 pounds, everything is good to go! And for those of you wondering, I have packed just 7 pairs of shoes. I think Morgan has 8 pairs and Allyson has 3 pairs. Maybe that's why the suitcase is so heavy!!! Hhmmmm.....

Looking at the time now, I really must try to get some sleep. Wish us happy travels and short lines and non-grouchy kids! Thanks!

BTW... Happy Birthday to Alex Hurley! AND.... Ashli turned 31 in April, not 30!!!! ha ha And I'm somewhere in between the two of them!

Have a wonderful weekend!

Kristin "out"

Tuesday, August 9, 2005 10:07 AM CDT

Hello! By now you've been able to digest (ha!) all the medical info I last posted about GERD (gastroesophageal reflux disease) and DGE (delayed gastric emptying). Hope your new knowledge made for interesting dinner conversations over the weekend! I'm sure Anna R. brought it up at her husband's high school reunion! (ha! again!)

We had a fairly relaxing weekend here. On Friday afternoon, the whole family went to the pool for Morgan's swimming lesson. Allyson snoozed most of the time, but did get to "dip" in the pool for a few minutes. It was nice and relaxing and fun for all of us to be together!Morgan and I both got our "pre-wedding" haircuts and highlights (well, one of us has natural highlights and doesn't have to pay for hers!). The girls and I also went to Ventura Harbor (at Morgan's request) on Saturday to play arcade games and eat ice cream. However, Morgan NEVER eats more than 7 or 8 licks of her ice cream cone, so I tried to steer her towards choosing a flavor that I would like too (knowing that I'd "have" to finish it for her...). No such luck -- she chose a BLUE bubblegum flavor with gumballs in it!!!! Can you say Y-U-C-K?!?!? Sure enough, after precisely 6.48 licks, she was done. I threw the rest away! It was probably better that I wasn't tempted since I've been successful with my pre-wedding diet and weight loss plan! On Sunday, Morgan and I took a special trip (just us) to the local Farmer's Market. She got her face painted with a "tatoo" of Ariel and we bought some fresh veggies. Uncle Josh came over for dinner and enjoyed playing with his favorite nieces!

This week is pretty quiet for us. Allyson only has appointments with Pablo and his team. Both the PT and OT will see her this week - prior to our two week vacation! I'm busily getting things packed and ready for our departure on Saturday, August 13th. Mark will join us on the 17th - just in time for the wedding festivities to begin! We're so excited that Ash and TG's special day is almost here! Hooray!

Please continue to keep our dear friends, the McKays and Crandells, in your prayers as John busies himself with his laptop and visits with his family and friends. The Hospice angels are taking great care of him and he's happy to be enjoying the comforts of his home. Keep on stormin' heaven - God is listening!!!!

I'll continue to post as often as I can while we're "back east." Thank you for your continued support for our family! It is greatly appreciated!

Love,
Kristin

Thursday, August 4, 2005 9:35 AM CDT

Good morning! Thank you, Crystal, for sharing those beautiful words in the guestbook. They brought a smile to my face!

Allyson had her endoscopy done at Tarzana Regional Medical Center on Tuesday. The procedure went well and Allyson was only a little fussy and groggy coming out of the anesthesia. Dr. See gave me the pictures of Allyson's "insides" and noted a few things. The opening of her esophagus into her stomach is larger than normal which is why formula has an "easy" time coming up. Also, there are red, inflamed areas mid-way up her esophagus and at the base which indicate that she does have acid reflux (or esophagitis) which has irritated her esophagus. Dr. See also mentioned that her sphincter muscle is underdeveloped. After doing my own research, I'm not sure if she was referring to the lower esophageal sphincter or the pyloric sphincter or both. The lower esophageal sphincter (LES) is a ring of muscle that forms a valve at the lower end of the esophagus, where it joins the stomach. The LES remains closed except during swallowing, when it allows food to pass from the esophagus into the stomach. When the LES is closed, it prevents the backflow (reflux) of stomach acid into the esophagus. If the LES does not close tightly enough, stomach acid backs up into the esophagus, causing heartburn. A weak lower esophageal sphincter is a major cause of gastroesophageal reflux disease (GERD). Similarly, the pyloric sphincter is the ring of muscle which contracts and expands to close or open the pylorus, so regulating the flow of food from the stomach to the intestine. In addition, in Allyson's case, the pylorus is elongated and narrow. This means that whatever is in her stomach has to "navigate" it's way to the pylorus (the area where the stomach empties into the intestines) which takes longer than normal. This is why she has delayed gastric emptying. By the way, pylorus comes from the Greek word "pyloros" which means "gate keeper." Now you can tell all your friends that you learned something today... you've probably learned more about the function of your esophagus and stomach than you ever cared to know, right?

So... what does this all mean? Well, we'll meet with Dr. See in about 4 weeks and talk about our options. Most likely, Allyson will have a gastric fundoplication (or Nissen, named for Dr. Rudolph Nissen) which will narrow the opening of her esophagus into her stomach by wrapping the fundus (top of stomach) around her esophagus. However, because of the "double whammy" of having delayed gastric emptying, she may require a pyloroplasty (or pylormyotomy) done when the fundoplication is done. The pyloroplasty involves cutting the pyloric muscle (the muscle at the bottom of the stomach) and making it larger. This allows the food to move out of the stomach faster. The pyloroplasty comes with the risk of dumping syndrome (the stomach empties too quickly) so it isn't routinely done for every child having a fundoplication. There's a lot for us to consider before doing anything. It's not 100ecessary that we do anything right now... thank goodness! Since Allyson is growing well and gaining weight (15 lbs. 12 oz. as of last week), there's not an emergent need for these surgeries, however, should we choose to have anything done, it will most likely involve two procedures. One, to "close" the top and the other to "open" the bottom. That my layman's terms for explaining all this! What a relief after all the medical mumbo-jumbo I was spouting off earlier!!!!

Yesterday, we saw Dr. Reinisch and Dr. T at CHLA. They are very pleased with the way Allyson's healing from her surgery. Dr. Reinisch said that her lip looks very good and that "we'll have to do something with the nose." He didn't say what or when. Her nose doesn't look "bad" by any means, but we've thought that her nose would require a revision at some point. Her nostrils still flare out a bit and could be corrected by turning them inward. Sometimes, a nose revision is done during palate surgery, but nothing was discussed. It was a a quick visit with the docs and we'll see them again in a month. After leaving their office, I was able to meet with the schedulers and confirm dates for both Allyson's hand surgery and her palate surgery. So, mark your calendars (ha ha!)... her hand surgery is November 17th and her palate repair is February 1, 2006. I know it sounds like a ways away, but they'll be here before we know it!

I think that's a long enough update for today. Hope you've had a good week! I'll post some new pictures later today... now it's time to hit the shower after going to the gym this morning!

Kristin

Monday, August 1, 2005 10:32 AM CDT

Good morning! Woo-hoo, it's August... only 19 days until the "wedding of the year" is FINALLY here! I know Ashli and TG and our entire families can't wait for the big event! We'll be traveling to Virginia in less than two weeks and have lots to do between now and then.

The four of us had a busy, busy and fun-filled weekend preparing for and welcoming the VAW-112 GoldenHawks return home from their 6 1/2 month deployment to the Persian Gulf. The girls and I spent most of Saturday purchasing homecoming food, flowers, etc. and decorating the hangar while Mark "stood duty" and made sure all the planes were off the ship and flying home. Yesterday was the BIG day and Morgan greeted "Uncle" Josh with open arms as he and 19 others flew-in on four E-2C Hawkeyes. We reunited with friends and all the families that had gathered for this wonderful occasion. While Mark shuttled Josh to and from his house, the three of us picked up more food for "round two". The rest of the squadron's enlisted personnel and non-aviator officers arrived on two C-9s between five and six p.m. Both homecomings were extremely successful and all of our hardwork paid off! I've added new pictures from yesterday's events for you to see. We were all pretty tired after our 12-hour day and hit the hay early last night. Morgan even slept until 7:30 this morning... which is LATE for those of you who know her sleeping habits!

Allyson has a busy week of appointments, etc. Today we will see the OT and PT at the Medical Therapy Unit here in Oxnard. They are part of the state-funded program (California Children's Services) who provide therapy to children with special needs. We completed "part 1" of their initial assessment last week, but a tired Allyson kept them from finishing the eval. Once the assessment and necessary paperwork is in order, she will begin receiving therapy at the center once a week. She will still continue to see Pablo and company at our home. Since this additional therapy is part of the state-program that will follow her until she's 21 years old (even though we'll relocate before then, her eligibility will transfer from state to state), it's important to get her "in" the system now and BEFORE we really need it. Early Intervention Services which funds Pablo's company only applies to children up to age three. That's probably more info than you need to know about California's state programs, but there you go anyway!

On Tuesday, Allyson will undergo an endoscopy (just like Aunt Ashli!) with Dr. See, her Gastroenterologist. This is an internal scope to see the anatomy and function of her esophagus and stomach. This procedure will determine (once and for all hopefully!) whether Allyson has reflux AND whether something can be done (surgically) to help speed up the rate at which her stomach empties so that she won't spit-up when she gets too full. She will have to be put under anesthesia for the endoscopy which is scheduled for 11:30 a.m. PST tomorrow and will only last a half hour.

On Wednesday, we'll see Dr. Reinisch and Dr. T for another check-up on Allyson's lip repair. We also hope to solidify a date for her palate surgery. Based on the availability in Dr. Reinisch's schedule, it will most likely be late January or early February 2006. We are still waiting to hear from the orthopedic surgeon regarding a date for her hand surgery, so we'll have to keep you posted on that. We are hoping to schedule that sometime in October.

As if Allyson's "stuff" wasn't enough to keep us busy, Morgan will begin "round two" of preschool swimming lessons today. She's made so much progress in the water this summer that we want to keep the momentum going. These lessons will run for two weeks and will hopefully allow Morgan to continue to gain confidence in the water and actually start "swimming". She's requested that Uncle Josh come swimming with us one day this week and I'm sure he won't disappoint her!

Hope you all have a great week! I'll update tomorrow after the endoscopy. We should have results from the doctor right away.

Thank you , as always, for keeping us in your thoughts and prayers!

Kristin

Friday, July 29, 2005 5:30 CDT

<<<<<<<......NEWS FLASH.........>>>>>>>

At 8: 22 a.m. this morning, Allyson said "ah-mah"! Pablo and Patty were here for her therapy session, so I have witnessed to back me up!!! It may not be "mama" yet, but it's pretty close! Who cares if she was looking at Pablo when she said it???? I'll take whatever I can get!

More later... swimming lessons are calling us. Morgan's Graduation Day! :-)


Wednesday, July 27, 2005 11:00 AM CDT

Good morning! Hope everyone is having a good week... We have been busy and have lots of news to share! Here you go...

BIG NEWS --- ALLYSON HAS A TOOTH!!!!!!!!!!!!!!!!

I suspect that this tooth has been the source of her increased spit-ups and cold-like symptoms that have developed this week. There's a little pearly white poking through the center of her upper gum line. It's actually in the premaxilla which the NAM device pushed back into her mouth. Time will tell whether this will be a "good" tooth. It's very possible that it will be misshapen (fang-like) or have poor composition (i.e. no enamel), but it could also be fine and the beginning of a mouth FULL of teeth! Who knows??? We are excited and pleased to document this milestone... and it was discovered on Daddy's birthday at that!

We've seen two doctors this week. First, Dr. Huang examined Ally on Monday to make sure that she wasn't coming down with a serious infection. He thought that she might have some excess mucous in her cleft palate and that it might be a little infected. As a precaution, he prescribed a mild antibiotic for her. She seems to be tolerating it well, although we've seen no change in her health yet. Yesterday, we saw Dr, Goldie, the Pediatric Neurologist. He was very thorough in both his physical and clinical exams of Allyson. He doesn't think she has any neurological problems and that further testing would NOT be necessary. Dr. Goldie explained that her rapid-than-normal head growth was most likely due to her body sending proteins and nutrients to her brain rather than to her body when she was having so many feeding problems. This is what Dr. Huang and I thought as well, but we wanted Dr. Goldie's opinion, just to be sure. He will follow-up with Allyson in November to check her progress, but doesn't feel like we have anything to worry about as far as her brain development is concerned. Thank goodness for that!

Morgan continues her swimming lessons this week. After jumping off the diving board on Friday, she decided that it would NOT be such a good idea to do it on Monday. Oh well - at least she did it once! Other than that, she continues to improve and feel more comfortable in the pool. She's even putting her face in the water while "swimming" with me and her swim teacher. The weather has been so beautiful over the past few days, so we've enjoyed our time in the sun and pool.

Mark and I are busily preparing for his squadron's homecoming this weekend. Between his Officer-In-Charge duties and my responsibilities as Spouse's Club President, we've been going in all directions to make sure the fly-in and homecoming celebrations go off without a hitch. I know he's anxious to see all his buddies and feel a part of "the team" once more. Morgan is thrilled to see "Uncle" Josh again and was talking about taking him swimming and showing him how she tucks her head in the water when he comes home. Very cute! I hope Uncle Josh is as excited to see her!

Please continue to keep the McKays and Crandells in your prayers (this is Holly's family for all of the website "regulars"). Her father, John, is at home and being cared for by hospice nurses. Although his surgeries over the past weeks were as successful as hoped, he continues to battle lung cancer and we're praying that his journey is a peaceful one.

Thank you for keeping us in your continued prayers as well. Although we've overcome a lot in the past seven months, the road is still long and we appreciate your continued support.

Love,
Kristin

The new photos were taken Tuesday night... Morgan and Allyson were so cute together... snuggling, laughing, playing... I just had to capture it all and share with you!

Monday, July 25, 2005 12:30 AM CDT

HAPPY BIRTHDAY TO (Daddy) MARK AND (Uncle) GLENN TODAY!!!! HAVE A GREAT DAY!

Good morning! Hope everyone had a good weekend! I know that everyone at FARFA had a blast. The pictures are terrific and we could FEEL the energy and spirit that abounded in Georgetown on Saturday. Ashli's recap is below for anyone who hasn't read it yet. Your generosity is amazing, although not surprising. We've seen your generosity in supporting all of us through this website... and there are 28000 hits to show for it!

As for our weekend... Allyson saw Dr. Reinisch and Dr. T on Saturday morning. Morgan went with us and enjoyed playing in the waiting room and examining room. We waited over two hours past our appointment time to see the doctors. Both Morgan and Allyson were great and very patient during our long wait! We ran into another couple and their son, Aiden (another NAM baby that we'd befriended over the past six months). Aiden was 9 days post-surgery and looked great! During Allyson's check-up, Dr. Reinisch noticed a sore forming in her left nostril between the stent and the inside of her nose. He felt that he should remove the stent so the sore could heal and not get infected or more severe due to the rubbing from the stent. She's definitely breathing MUCH better now that the stents are out and I think that has helped her sleep better too. We'll see Dr. Reinisch again on August 11th - right before we leave for Virginia for Ashli's wedding! Allyson's spit-ups have been sporadic, but when they come, they're doozies! I'm taking her to see Dr. Huang this afternoon just to make sure everything is okay. Mark and Morgan both have a cold and cough, so we want to be proactive in keeping Allyson well!

On Saturday afternoon, the girls and I went to the pool where Morgan "wowed" me with all the new things she can do. She's voluntarily ducking her head underwater and jumping off the side of the pool on her own. Allyson snoozed under the shaded canopy and in her stroller while Morgan and I played in the water. Her swimming lessons continue this week. We're so pleased with the progress she's made in just a few weeks!

Our "girl time" continued on Sunday with Morgan's request to go to the mall. We hit the "usual" shopping spots - The Disney Store, Gymboree, and The Loft. We had lunch at Red Robin (at Morgan's request) and stopped at the playground for some energy burning time! It was fun to be out and about with my girls and it gave Daddy some much-needed studying time. He's planning to take JPME test #4 before the end of the month.

Have a wonderful week and check out the new photos! Also, click on Ashli's FARFA photo album - they're great as well!

Kristin


July 24, 2005 4:00 PM EST

Greetings from Aunt Ashli at FARFA headquarters! Well folks, WE DID IT!!!

The 1st Annual Rally for Ally to benefit the National Foundation for Ectodermal Dysplasias took place on July 23, 2005 in Washington DC. Ashli Matus/Tom George and Peggy Baker/Mike Sullivan co-hosted the event in honor of Ashli & Tom's niece, Allyson Glenn Kelso, born 12/22/04 with EEC Syndrome.

An estimated 140 people attended throughout the day and at the initial count for donations for the NFED is..... $6,000!!! We are grateful to everyone who donated their time, support, raffle items, food and energy to make this event a huge success. We are very pleased to have had such a great turn out, super weather, tons of fun and special connections made with fellow friends of the NFED, especially Rolf and Zemery.

I was reminded throughout the day:
The true meaning of life is to plant trees, under whose shade you do not expect to sit. ~Nelson Henderson

A special thanks to a few super-duper helpers and contributors: Meredith Shields, Alex Hurley, Tom Mahoney, the Margarita Man of MD, Mrs. Matus's former 8th grade students, Terri & Jerry (Mom & Dad) for cleaning and grilling! and ALL the folks of brought food items and raffle donations - YOUR SUPPORT IS APPRECIATED and we could not have done it without you. ~See you next year!~

The following quote became my motto for this event and the day... We certainly felt that the human spirit was alive and well through the many connections we made yesterday all to support the same cause.

Become a possibilitarian. No matter how dark things seem to be or actually are, raise your sights and see possibilities - always see them, for they're always there.
~Norman Vincent Peale

With heart-felt thanks and gratitude,
Ashli Matus
(along with Tom George and Peggy & Mike Sullivan)

EVENT PHOTOS! Copy and paste this link into yuor browser for Rally for Ally photos:
http://www.kodakgallery.com/I.jsp?c=zrj2cxz.84ngp25f&x=0&y=-z0c3sj

July 24, 2005 - 4 PM ET

Greetings from Aunt Ashli at FARFA headquarters! Well folks, WE DID IT!!!

The 1st Annual Rally for Ally to benefit the National Foundation for Ectodermal Dysplasias took place on July 23, 2005 in Washington DC. Ashli Matus/Tom George and Peggy Baker/Mike Sullivan co-hosted the event in honor of Ashli & Tom's niece, Allyson Glenn Kelso, born 12/22/04 with EEC Syndrome.

An estimated 140 people attended throughout the day and at the initial count for donations for the NFED is..... $6,000!!! We are grateful to everyone who donated their time, support, raffle items, food and energy to make this event a huge success. We are very pleased to have had such a great turn out, super weather, tons of fun and special connections made with fellow friends of the NFED, especially Rolf and Zemery.

I was reminded throughout the day:
The true meaning of life is to plant trees, under whose shade you do not expect to sit. ~Nelson Henderson

A special thanks to a few super-duper helpers and contributors: Meredith Shields, Alex Hurley, Tom Mahoney, the Margarita Man of MD, Mrs. Matus's former 8th grade students, Terri & Jerry (Mom & Dad) for cleaning and grilling! and ALL the folks of brought food items and raffle donations - YOUR SUPPORT IS APPRECIATED and we could not have done it without you. ~See you next year!~

The following quote became my motto for this event and the day... We certainly felt that the human spirit was alive and well through the many connections we made yesterday all to support the same cause.

Become a possibilitarian. No matter how dark things seem to be or actually are, raise your sights and see possibilities - always see them, for they're always there.
~Norman Vincent Peale

With heart-felt thanks and gratitude,
Ashli Matus
(along with Tom George and Peggy & Mike Sullivan)

EVENT PHOTOS! Copy and paste this link into yuor browser for Rally for Ally photos:
http://www.kodakgallery.com/I.jsp?c=zrj2cxz.84ngp25f&x=0&y=-z0c3sj




Saturday, July 23, 2005 8:26 AM CDT

HAPPY RALLY FOR ALLY DAY!!!!!

I woke up during the night with excitement over what would be happening today. I wish we could be there to experience it all and meet and greet so many wonderful people who have been supporting us and praying for us over the past seven months. I spoke with Ashli yesterday afternoon and she and Peggy were hammering out the final details of "FARFA". "No, we're not stressed! This is fun!" she exclaimed. Thank you in advance to everyone who is helping to raise money for the NFED. We ALL appreciate your generosity!

I've posted new photos from yesterday. Teetay got one last picture with her girls before departing for the airport. It was a tearful good-bye, but we smiled through our tears knowing that we'd be back together for the "wedding of the year" in just a few weeks. Morgan cried herself to sleep last night saying, "I miss Teetay so much. I want to go on the airplane to see her tomorrow." She's so sensitive and cares so mush for her Teetay - it was sweet!

Allyson seemed to miss Teetay (her roommate for the past month) last night as well. She woke up three times crying for her and wanting her to clean up her spit-up! ha ha! She back to sleep now until we have to leave for her check-up with Dr. Reinisch and Dr. T at 8 a.m.

Have a wonderful day and I can't wait to see Rally for Ally updates in the guestbook tonight!

Kristin

Wednesday, July 20, 2005 4:48 PM CDT

Hello! Here's your mid-week update from an UNUSUALLY WARM Port Hueneme...

Allyson continues to recover well. Her mouth and nose are close to being "gunk free" and she seems to be getting used to the feel of things. It's hard to believe that her surgery was just two weeks ago! The only thing that's been troubling her (and us) are the "more frequent than usual" spit-ups (or throw ups). At first we thought she might be taking in too much formula, but that didn't seem to make a difference. We've stopped giving her Zantac (although it's supposed to help with reflux, Mark and I have never been convinced that it did much good). She seemed to do well for the past two days (Sunday was a "bad" day as far as the upchucks were concerned), but she's having trouble keeping all her formula down again today. I've spoken to her pediatrician who recommended we look out for signs of fever or other sicknesses. Tomorrow we have a follow-up appointment with the ENT who put in the ear tubes, so we'll see if he has anything new to say.

Geep had a great time visiting with both the girls. Allyson regularly returns smiles when he makes funny faces and they both get a kick out of that! Of course, Morgan insisted that Geep be the bath-giver, story-teller, and betime-tucker-iner almost every night he was here. Right now, he's stuck at LAX awaiting the plane that supposed to take him home... he's delayed about 3 hours, so it will literally be the middle of the night when he touches down at Dulles later on.

Mark and I went out to dinner last night to celebrate his birthday a little early while we still had the grandparents to baby-sit. We enjoyed fajitas and margaritas - one of Mark's favorite meals - outside by Ventura Harbor.

Morgan has had a good week in her new 4-year old preschool class. Every morning she says that she doesn't want to go to Miss Mary's class, but by the end of the day she can't stop talking about all the great things she did and learned. Morgan also started swimming lessons this week. She's in a preschool class with three boys and she's already made great strides in being comfortable in the water. She let's the instructor take her underwater and even dunked her head yesterday with Mark and I playing ring around the rosey. When we got to the "all fall down", the three of us went under together. Morgan got a kick out of that!

We're so excited about this Saturday's Rally for Ally. Check out Alex Hurley's guestbook entries from the week with detailed info about the "Rally for Ally" notepads produced by a stationery company she represents. They are donating 20% of the proceeds from the notepads sales to the NFED. Also, in the past two days, Ashli has been contacted by three Washington-area families who have a family member with and ED syndrome. The received info about Rally for Ally from the NFED. Two of the families are planning to attend RFA and the other has donated a weekend stay at their condo in Ocean City, MD, for the silent auction. WOW! This "little" idea of Aunt Ashli's has turn into a pretty big event. I can't wait to hear all about it.

Have a good rest of the week! We'll update again before the rally and I'll try to post new pics later tonight. Mark and I are off tonight to a squadron function in preparation for their return from deployment.

Have a great evening!
Kristin

Saturday, July 16, 2005 1:19 PM CDT

We are back from our second post-op appointment with Dr. Reinisch and Dr. T. Allyson's stitches on the outside of her nose were removed. One place bled a little bit when Dr. Reinisch pulled out the stitch, but stopped after applying pressure. The doctors are pleased with her progress in healing. We will visit them again next Saturday. The nose stents will remain in for a couple of weeks more. The best part was getting all the scabs and dried "gunk" cleaned off. Now you can really see the outcome without that other stuff getting in the way!

Teetay and Morgan are grocery shopping and we're still awaiting Geep's arrival to our house. We know he is "in route" from the airport, so we shall see him soon. Teetay already filled you in on our plans for the rest of the day... movie time and pool time! Should be fun!

Yesterday's picnic with Morgan's classmates was a lot of fun. She certainly enjoyed the "jolly jump" and having her face painted and running throughout the playground. When I picked her up from school around 4pm yesterday, ALL the preschool aged children (in THREE different classes) were still napping. They truly wore themselves out! On Monday, Morgan will start attending the 4-year old preschool class along with 4 or 5 other classmates. She's a little apprehensive about going to Miss Mary's class, but I think she'll be fine once she sees other kids being "promoted" as well.

Thank you for your continued prayers for John McKay (Holly's dad) and their entire family as he recovers from his surgery on Thursday.

Check out the new pictures on the photos page!

Kristin

Thursday, July 14, 2005 10:01 AM CDT

Hello, all! Allyson slept through the night last night for the first time since before her surgery! Teetay and I didn't know how much we had missed an uninterupted night's sleep!!! Yahoo!!! She's still "resting" in her crib right now! Her lip and nose continue to heal. There's still some scabbing under her nose that we'll address with the doctors on Saturday. Pablo's team will be here this afternoon to see Ally's new look for the first time and review her exercise regimen. (Pablo is studying in Paris right now - finishing his Master's in an exchange program with UCLA. He'll be back this weekend.) Allyson seems to be back to her "old" self and was enjoying sitting up and playing with toys last night. I'll post pictures in a minute!

As you've read in the guestbook, our dear friend, John McKay is having surgery this afternoon (1:30pm Texas time) to remove a tumor that is pressing on his trachea. "Uncle" John is Holly's father (as you know, Holly is the catalyst for starting this website and is famous for sending "Texas-sized" hugs). Let's all keep him, his wife, Charlotte, Holly and the Crandell family, and Holly's brother, David, in your thoughts today. I bet we can send them "U.S.-sized" hugs and prayers for a successful surgery and hopeful prognosis. Thank you!

I'm certain that the love and support that exists on this website will be extended to our loved ones during the next few days. The power that we all can produce is amazing!

Kristin

Tuesday, July 12, 2005 12:02 PM CDT

Good morning! Here's your long-awaited journal update highlighting our weekend activities and the start of this week. I would have updated sooner, but Teetay has been pushing me out the door to go to the gym every morning. When she cracks the whip, I jump!

Allyson continues to heal well from her surgery. We're giving her minimal doses of Tylenol (regular) and she's back to her normal volume of formula. We're still giving it to her at a slightly slower rate, but the total is the same.

She was seen by Dr. Reinisch and Dr. T on Saturday morning. They cleaned up some of the dried blood around her nose and clipped off some of the hardened, plastic-like glue that was dangling from her upper lip. Their "work" seems to have "dislodged" some more blood, so if you think that her nose is scabbier in the most recent pictures, you're right! We can't see anything actively bleeding, but the dried stuff seems to be growing. I decided to be brave this morning and gently wipe some away. It's hard to tell what's a stitch and what's glue... of course, I don't want to open up anything that's supposed to be closed! When I post pictures later today, I think you'll see a difference. Anyway, her appointment with the doctors went well. We have another visit to CHLA this Saturday. Dr. Reinisch said he would remove the stitches from the outside of her nose at that time. While we were waiting (in the VERY crowded waiting room) to see the doctors Saturday morning, we ran into the mom and baby, Emma (who was born the same day as Allyson with a unilateral cleft lip and palate), who I had met in the ENT's office back in June. She was amazed with Allyson's repair (much like I had been when I first saw Emma two months after her repair)! Mark couldn't believe how great Emma looked. Like I observed in June, you wouldn't believe that she had once had a cleft lip. Just before we went into the examining room, an adorable red-headed, freckle-faced girl approach me while Allyson was sitting in my lap. She smiled and said, "I had a cleft lip too." I complimented her on her smile and asked how she was doing. She was eight years old and had recently had a lip revision and hard palate closure. Her mom then prompted her to tell me "the best part" of her recent surgery. The little girl tugged on her ear and showed off a shiny, pink stud earring. I assumed that her "present" for enduring another surgery was getting her ears pierced. "No," she said, "Dr. Reinisch pierced my ears for me while he was doing my surgery." WOW! What a great man (as if we didn't know that already)! Her mom told me that the first thing she asked for in recovery was a mirror to look at her newly pierced ears. Mark and I were happy to meet this little girl and see her confidence in speaking to grown-ups and total strangers about her surgeries and life after having a cleft lip and palate.

As Teetay wrote in the guestbook, our trip to CHLA was the first of THREE "dates" Mark and I had on Saturday. In the afternoon, he wanted to hit the surf, so I accompanied him to the beach and sat in the sun reading my book for an hour or so. We both got to do something we enjoy a lot - and we did it together! Later that night, we went to dinner at a restaurant at Ventura Harbor. The food was very good and we had a great time! It was the first time we'd been there, and other than the rest of the diners being VERY old... and I mean canes, walkers, wheelchairs, and velour short-sleeved shirts with elastic waistbands OLD, we really enjoyed ourselves. Teetay had a busy day with Morgan and Chuck E. and grocery shoopping and an even busier night with both girls and meds to dispense every half hour, but she managed it all as well as we do!

Sunday was a lazier day for all of us... we packed in so much on Saturday, that we needed a breather! Yesterday Morgan went back to school and enjoyed a spaghetti lunch/birthday party for one of her classmates. Teetay, Allyson, and I did a little shopping and bought some household things. Ally was a trooper, as always, and we all enjoyed being out together!

We're "appointment free" until Saturday. Morgan has a school-wide field trip to a local park on Friday. Teetay, Allyson, and I will "chaperone" for a bit. Her class made special t-shirts for the event and she's super-excited about it! Geep returns on Saturday for a long weekend visit. I'm sure he'll be amazed at how different Ally looks after just 10 days post-surgery.

Thank you for all your entries as Allyson recovers. We are so pleased and amazed at the outcome. I can't imagine her looking any more perfect than she does right now.

We're also thrilled that so many are planning to attend Rally for Ally in Washington, D.C. on July 23rd. Please contact Ashli directly if you have questions, donations, etc. Her e-mail is AshliAGM@aol.com She and Tom and their neighbors, Peggy and Mike Sullivan, have been working hard (including installing a new deck, patio and landscaping!) to make this event a HUGE success and raise money for the NFED. I've attached the NFED link below for anyone who hasn't read about the foundation before. We wish that we could be there to show off Allyson and thank everyone personally for their support. I'm certain this will be an annual event, so we'll make it next year!

I think this brings you up-to-date... have a wonderful week!

Kristin

Friday, July 8, 2005 9:33 AM CDT

Friday, July 8, 2005 2:45 PM PST

WE GOT A SMILE!!!!! She's still not quite sure how this new mouth is supposed to work, but she's trying! Just had to post this cute look! Have a great weekend! :-)

Good morning! Hope you're enjoying the new home page photo and the "progression" pictures on the photos page. Allyson seems to enjoy being back at home. We stopped giving her tylenol wih codeine and switched to regular tylenol yesterday afternoon and she was "back to her old self" playing with her toys and swinging in her swing. Her lip doesn't seem to be bothering her as much as her nose does. She's "comfortable" putting her thumb in her mouth, although we're trying to keep in out as much as possible. By last night, Allyson was a little restless so we gave her tylenol with codeine again to help her sleep through the night. Before getting the tylenol, she reacted to her antibiotic and threw up twice. She was fussy for a little bit after that, by finally settled down to sleep.

Unfortunately, Ally didn't sleep as well last night as the previous night. Teetay was up with her several times and helped sooth her back to sleep. We gave her another dose of tylenol with codeine around 2 am. She slept in 2-4 hour shifts. We rearranged her bed this morning and removed the bassinet insert (I think she's finally outgrown it!). She's been back to sleep for the past hour and we're planning to let her rest as long as she wants.

Morgan seems in awe of Allyson's new look. She sucked in her breath and beamed a big smile when she first saw her afer surgery. We've caught her looking at Allyson with delight several times over the past few days. Morgan exclaims, "now Allyson really does have a nose and mouth just like mine." Morgan was a super big sister during our two days at the hospital. She entertained herself well and took advantage of playing with everything that CHLA - a kid friendly hospital - has to offer. After arriving home yesterday, Morgan was ready for some four-year old playtime. She rode her bike down the street and played with her friend, Parker, at his house. They were super-silly together and had all of us cracking up! We've arrange another play date for lunchtime today.

I'll keep updating pictures throughout the weekend and let you know how Allyson's doing. I received a phone call from another "NAM" mom (that's what we called ourselves as we met weekly in Dr. T's waiting room) this morning. Her son, Gage, had his lip repaired a week before Allyson's. She called to see how Allyson was doing and offered to answer any post-surgery questions I might have. It's very comforting to have the support from others in the same situation. I'm glad I am able to offer support to others as well - like the mom I spoke with last night whose daughter is having surgery right now. Say a quick prayer for Kiera during her lip repair today!

Thank you for keeping us in your thoughts and prayers always. We love your support and your encouraging words - whether they're in your mind or written in the guestbook. It awesome to know how many people care about us and our family. Thank you, thank you, thank you.

Love,
Kristin

Wednesday, July 6, 2005 10:40 PM EDT

Hi from Kristin... just a quick note to let you know that Allyson continues to do well. She has been sleeping a lot this afternoon. We've given her a dose of Tylenol with codeine to make her more comfortable. I thought this picture taken at the hotel a couple of hours ago was a "more better one" (as Mark said!). It looks like her nose is still bleeding a little bit. I'm a hestitant to clean it, but will muster up the courage to "tidy her up" before bedtime tonight. We're hoping to get a some sleep tonight, but that will depend on Allyson, of course. She has been taking Pedialyte through her new mic-key button adapter. We will switch to a low volume of formula in about an hour from now.

Mark and I loved reading all the guestbook entries posted today. We certainly felt the power of your prayers today! We are so pleased with the outcome of her surgery and are proud to RE-introduce her to you all!

More pictures and updates tomorrow after we return home!

Kristin

Wed, July 6, 2006 6:30 PM EST

ALLYSON IS OUT OF SURGERY!! :) Hooray!

Quick update again as of 6:30 PM EDT... The gang is well and Allyson is an angel just a few hours post-surgery. The immediate post-surgery pics are up as you can see and there will be frequent updates over the next few days so we'll see you back here on the ol web site! My family is OVERWHELMED by your love and support!!!!!

As a sign off from my day's journal entry and update, a quote from one of my favorite guys (what, didn't you know I like Emerson?!) to THANK you, and Ally for blazing one heck of a path in her short 6 months... not to mention all the other EEC friends and everyone who faces challenges in their daily life.

"Do not go where the path may lead,
go instead where there is no path and leave a trail." ~Ralph Waldo Emerson

And lastly, a wahoowah shout out for Kristin & Mark...

"Learn from yesterday, live for today and hope for tomorrow." ~Thomas Jefferson

Much love to you all!
Ashli
*********************************
Greetings All! To quote Teetay, "absolutely amazing, absolutely amazing!" I will post pictures of ALlyson's new look as soon as I can later this evening! I received the post-surgery call around 3 PM ET. She went in for the ear tubes and g-tube change around 7:30 this morning, then the lip surgery around 9:30 AM. I am told that Allyson has sort of a "pouty lip" look right now, with some swelling and blood around her nose and mouth (she DID just come from surgery!) so you have been warned for the pictures that will be up later. You can hardly see the stitches but our little trooper has a nose, mouth, upper lip and looks AMAZING! She's on Tylenol for pain, no arm restraints (yet - Kristin & Mark have them if they need to use them later) and when Teetay called, Allyson was sitting in her mommy's lap "watching TV". So not too drousey drunk from the meds - yeah!

Wehn you see the pics later (I know, such a tease...)Ally's eyes will probably be pretty RED. The only "oops" was that the chart was not read to see that she is allergic to Tegaderm - the tape that she is very allergic to! Anyway, she's fine, just has some really red eyes.

Allyson is being released this afternoon from CHLA but given that it'll be late in the day, the family is satying at the hotel again tonight so not to have to fight the LA rush-hour traffic journey back home. So, check back later for the PHOTOS and any more scoop I might have learned. The numerous postings on the site today are awesome and we appreciate all the support and well wishes!

STAY TUNED.......

Love,
Aunt Ashli

“For nothing is fixed, forever and forever and forever, it is not fixed; the earth is always shifting, the light is always changing, the sea does not cease to grind down rock. Generations do not cease to be born, and we are responsible to them because we are the only witnesses they have. The sea rises, the light fails, lovers cling to each other, and children cling to us. The moment we cease to hold each other, the sea engulfs us and the light goes out.” ~James Baldwin

Tuesday, July 5, 2005 7:30 PM EDT

Greetings from Aunt Ashli in Washington DC! Please note the picture above... cherish this face as the next time you visit this site there will be a post-surgery picture - HOORAY! I'll do my best to get an update posted with pics ASAP. Dad/Geep is already scoping out the "hot spots" (i.e. Wi-fi access!) right near CHLA :)

The good news for an update on this site is that you won't have to wait too LONG as surgery is scheduled for 7:30 AM!! YEAH! Kristin and Mark will take Ally to CHLA at 5:30 AM to check in and do all the routine pre-surgery stuff then the anesthesia and surgery begins at 7:30 AM. While at the hospital today for the pre-op appointment, Dr. Yen stopped by and he had not seen Ally in a while... He was amazed and said she looked GREAT and is totally ready and "lined up" for surgery. We are so optimistic for a super new look for Ally and grateful the docs have cared for her so well to get things in perfect surgery-order!

Kristin, Mark and Allyson are staying near CHLA tonight with Geep, Teetay and Morgan in the next room. Obviously Morgan does not need a 5 AM wake up call :) They are all heading to The Grove tonight for dinner (The Grove i.e. where Britney goes shopping and to the movies - yes, THAT Britney ;) Allyson will also enjoy her last full meal for a while as she is on Pedialyte only after 12 AM.

THANK YOU THANK YOU THANK YOU on behalf of the Kelso and Matus familes for ALL OF YOU out there praying for Allyson, and for Kristin & Mark's strength, patience, low anxiety levels and sanity ;) - They feel the love and are grateful for you all in cyber-land! Thanks for your extra special prayers for Ally on July 6th as she has her first face-altering surgery, ear tubes put in and her little g-tube button changed out. It'll take about 3-4 hours to accomplish ALL this (can you believe the lip is only about an hour and a half surgery?!?) so check the site later tomorrow afternoon/evening for a FULL update.

Again, this face you see above will change. But fear not, for those fortunate enough to have met Allyson in person knows the spirit, joy, enthusiasm and abounding love SHE shares in an instant cuddle will only flourish. She is just over six months old but has the strength and soul rarely seen. You can see it and feel it in Ally’s presence – we are all better for having met Ally and for being on this journey with her. Signing off, I leave you with a pretty cool quote that encompasses us ALL as we continue to embark on this journey and the story of my personal favorite little Al-Pal.

“For nothing is fixed, forever and forever and forever, it is not fixed; the earth is always shifting, the light is always changing, the sea does not cease to grind down rock. Generations do not cease to be born, and we are responsible to them because we are the only witnesses they have. The sea rises, the light fails, lovers cling to each other, and children cling to us. The moment we cease to hold each other, the sea engulfs us and the light goes out.” ~James Baldwin

“Talk” to you tomorrow!
Love,
Ashli


Tuesday, July 5, 2005 12:13 AM CDT

This homepage photo is the last one you'll see of Allyson with the NAM. Ashli has a couple of "NAM-less" photos to post on Wednesday - the final "before" pictures, you could call them. By the time most of you read this, we will be headed to Los Angeles for our pre-op appointment Tuesday morning. The surgery schedule for Wednesday is published around 3pm the day before. Ashli has "instructions" to post this info on the website so that everyone knows what's happening and when!

Thank you so much for the guestbook entries posted this weekend and for the phone calls we received at home today. We are so blessed to have such a wonderful network of friends and family across the country. Your prayers and loving support have helped us get through the past six months and will continue to provide strength to us during these next few challenging days. Lots of hugs to you all!

Kristin


Sunday, July 3, 2005 10:44 AM CDT

Happy July 4th Weekend, everyone!

I know... I know... I left you all hanging the other day with my abrupt journal entry ending. Sorry about that! We have been busy as usual!!

First, let me bring you up-to-date on Allyson's appointments from last week. As I mentioned, she saw the Pulmonary doctors last Tuesday. The sleep study that she had on June 11th revealed that she DOES have obstructive sleep apnea. Her AHI (apnea hypoxia index) is not severe enough to require medication or a special machine while sleeping, but it is notable and something to watch down the road. It is not unusual for children with clefts to have sleep apnea. Their ability to regulate their breathing is compromised by the cleft palate. Allyson will have another sleep study done prior to her palate repair in order to record any changes in her sleeping and breathing patterns. Her overall check-up went well and her lungs sounded clear. We will continue the albuterol treatments indefinitely. The doctors feel that it's best to continue them in light of Ally's upcoming surgeries this year. The albuterol will keep her lungs healthy and encourage the growth of new, healthy tissue. We were also told that a swallow study could be scheduled after her lip ir repaired. If the study shows an improvement in her swallowing function, we might be able to introduce some oral feeding. Allyson will still receive the majority of her nutrition through her g-tube, but we could supplement that with oral feedings. Of course, we still need to get through her lip repair first, but this was definitely encouraging news. On her last visit to Pulmonary, they indicated that she would have to wait until after her palate repair to do a swallow study.

We also saw Dr. T on Thursday for our FINAL NAM appointment. He was very pleased with the way Allyson's nose is forming and assured us of a successful outcome to the surgery. Dr. T did not make any adjustments to the NAM this week. We will leave the NAM in as she's wheeled into surgery and Dr. T will remove it in the operating room. As I changed the tapes yesterday afternoon, I said to Allyson, "we only have to do this three more times!" That thought brought smiles to both our faces. :-)

Other than doctors' appointments, our week has been full of trips to the park and to the mall. We had portraits taken of Morgan and Allyson on Wednesday. I've posted one of them on the photos page. They both did very well and we even got a three-generations picture with Teetay, the girls, and me. Allyson also had visits from both the Physical and Occupational therapists. They continue to be pleased with her progress and development. Morgan and Teetay had a special outing to the beach park one afternoon which included some wave-jumping!

On Friday, Teetay and I planned to have lunch "out" alone while the respite care nurse stayed with Allyson. I'm not sure if I mentioned that the respite nurse lives just a few houses down the street from us... another God-wink for sure! Friday's visit was the second time she's come to watch Allyson. Well, soon after we had ordered our entrees, Connie, the nurse, called me and said she was having trouble with the feeding machine. I tried to troubleshoot over the phone, but was not able to "solve" it. Allyson was very agitated and Connie "needed" me. So, Teetay and I changed our order "to go" and headed home. Connie had resolved everything by the time we returned home. We ate our lunch in the living room while she continued to tend to Allyson (who had fallen asleep by this time) and then headed back "out" again. Of course, the afternoon wasn't exactly as we had planned, but we did enjoy our time together!

Mark and I went out to dinner Friday night while Teetay stayed with Morgan and Allyson. She has mastered all the "directions" that accompany Allyson's g-tube, etc. and even dispenses medicine through the tube. It's wonderful to have the freedom to leave Allyson and Morgan for awhile and know that Teetay can handle everything. We're looking forward to other "nights out" while she's here.

Geep arrived late last night (actually after midnight this morning!) after his flight out of Dulles was delayed three hours. Morgan galloped down the stairs to jump into bed with Geep early this morning. He's at the "top of the list" today and even had the "privilege" (ha ha!) of assisting Morgan in the bathroom this morning! Morgan has already requested that Geep give her a bath tonight as well.

Hope your 4th of July weekend is safe and enjoyable. The men will do ribs and chicken in the smoker tomorrow and we'll watch the fireworks above Channel Islands Harbor from our driveway. Morgan has said that she wants to watch them this year (she has been afraid in the past), so we'll see if she can stay up past her bedtime and enjoy the light display in the sky!

We'll all head to CHLA Tuesday morning for Allyson's pre-op appointment and will spend the night near the hospital that night. We won't find out her surgery time until Tuesday afternoon. I'll have Ashli post while we're gone. We're anticipating that we'll be home on Thursday. Allyson's surgery is supposed to be done as an outpatient. We are planning to stay at the hotel Wednesday night as well... just in case.

Thank you for your continued thoughts and prayers! This is an exciting week for us... although somewhat bittersweet as we'll definitely miss that face of Ally's that we've loved for the past six and half months! We appreciate all of you being a part of this journey with us!

Love,
Kristin

Wednesday, June 29, 2005 4:15 PM CDT

Hello! This is journal update "take 2" as I accidentally deleted the update I composed yesterday afternoon... this will probably not be as long or as witty, but the "excessive communication gene" will do it's best!

We had a wonderful visit with Aunt Ashli and it was great for me to "get out" and enjoy all the bachelorette festivities! We all went out for sushi on Friday, then winetasting Saturday, and a fabulous dinner Saturday night in downtown Ventura. I think the other "maids" from San Francisco, Los Angeles, and San Diego had a great time too! We made sure Ashli enjoyed herself and was able to relax with her best California girls.

On Friday afternoon, Allyson was cared for by the respite nurse for the first time. After several months of trying to find the right match, we found a nurse who lives right down the street from us. Through Early Intervention, we are authorized 24-hours of respite care each month. Connie, the nurse, loved being with Allyson and will be here again this Friday for a four hour shift.

Teetay arrived late Friday night and was greeted in the early morning by chatterbox Morgan. She so loved seeing her Teetay again! Since then, they've been joined at the hip doing all sorts of fun stuff - check Teetay's guestbook entries for more details.

The visit with the pulmonary doctors went well yesterday. They shared the results of the sleep study conducted a couple of weeks ago and did a thorough pre-surgery exam.

More later... Pablo and the therapists just arrived!

Tuesday, June 21, 2005 10:01 PM CDT

Hello, everyone! We're back from our trip to San Diego and visit to Legoland. We had a great time and Morgan was thrilled to see all the "lego" people, especial Dora, Boots, and Diego. There were lots of age-appropriate rides for Morgan to enjoy. She really liked the spooky tunnels and seeing all the animals and other creatures made entirely out of legos. We all took a stroll through Miniland where the cities of New York, Washington, San Francisco, and New Orleans are replicated. (Yes, they are built out of legos!) I think the "phrase of the day" was "Wow! That's really cool!"

Our Tuesday was filled with doctor's appointments for both girls. Morgan had her 4-year old check-up with her pediatrician. She weighs 36 pounds and is 40 inches tall... she's slightly above the 50th percentile for both. Morgan got one shot and was such a brave girl - she only cried for a few seconds! Allyson saw Dr. T this afternoon. He adjusted her nose stents and they are not as wide as before. He said she's "ready for surgery" and is very pleased with the outcome after almost 5 months of wearing the NAM. During this final phase, Dr. T molded the nose stents to stretch her nostrils outward. Imagine pulling the tip of her nose straight out from her face. We'll see him again next Tuesday and that will be it! Dr. T will assist Dr. Reinisch during the lip repair on July 6th.

Grandma and Grandpa have one last day with us before taking the red-eye home Wednesday night. Allyson has her six-month developmental assessment with the program coordinator for Early Intervention Services and Pablo tomorrow morning. Over the past few days, Allyson has been "reaching for the stars" (literally!) and has been full of smiles, laughs, and new sounds for all of us. She continues to surprise us with new "tricks" and is such a joy to be around.

Thank you for all the inspiring guestbook entries over the past few days - we always appreciate hearing from so many of you. Happy official start of summer to you all! May your days be filled with sunshine and warmth!

Kristin

Saturday, June 18, 2005 6:01 PM CDT

Morgan's birthday celebration continues... Yes, there are STILL presents to be opened and toys to be played with...

We are having wonderful time with Grandma and Grandpa Kelso. Morgan LOVES her new Hungry Hungry Hippos game and can't get enough of eating those marbles! She's also into her Fairytopia dolls and their peony house and all the Fairytopia stuff that goes with it! Yesterday, we tried out her new princess roller skates... THIS ONE may take awhile. She had a blast being pulled by Mommy and Grandpa on her skates!

Allyson seems to be "over" the cough and cold she had earlier in the week. She's been full of smiles for all of us and follows every move her big sister makes. You can see her eyes fixed on Morgan as she opens another birthday gift.

This weekend's plans included a trip to the mall this morning (at Morgan's request!) to play at the indoor playground. It's a beautiful, cloudless day here, so we're heading to the beach park in a few minutes and out to dinner this evening. Tomorrow we'll drive to San Diego and visit with former neighbors of the Kelsos in the afternoon before hitting Legoland on Monday.

Happy Father's Day to all the dads who read this website... especially Morgan's and Allyson's Daddy, Geep, Grandpa, Uncle Glenn, and our uncles, cousins, and friends who are dads.

I'll be back with more pictures and another journal update on Tuesday. Morgan has her four-year old check-up and Allyson sees Dr. T that day.

Love,
Kristin

Thursday, June 16, 2005 2:47 PM CDT

HAAY BIRTHDAY TO MORGAN!!!! WE'RE HAVING A GREAT DAY CELEBRATING MORGAN'S 4TH BIRTHDAY AT HOME AND SCHOOL!

We began the day singing happy birthday to Morgan while she enjoyed "birthday pancakes." We've just returned from her Princess Party at preschool where the kids chowed down on cheese pizza, apple slices, and veggies. Miss Margie let them have their ice cream, but asked that they wait until snack time to have their cupcakes. Morgan wanted to come home with us, so we brought cupcakes with us and sang to her again and blew out candles again just a little while ago. We'll open presents and visit the park with the big slide after her nap. Quite an exciting day!

Allyson seems to be feeling better. Dr. Huang did not think she has an infection after examining her yesterday. However, with her surgery less than three weeks away, he prescribed a dose of antibiotics to head off any potential infection. We certainly don't want Ally sick with her surgery approaching! Her weight and height were 13 pounds, 10 ounces and 25 inches, respectively. Both measurements place her between the 10th and 25th percentile. The BIG news is that Allyson's head measured in the 90th percentile! We know that she's smart and she's got a big brain to prove it! Of course, Dr. Huang wants to watch her head growth over the next couple of months. He doesn't suspect that there's any reason to be concerned, but when you have one part of the body growing more rapidly than the rest, you want to keep an eye on it.


I've posted some new pictures of our celebrations today! More to follow, I'm sure!

Thanks for all the kind words and thoughts from so many and all the warm birthday wishes for Morgan!

Love,
Kristin

Wednesday, June 15, 2005 11:23 AM CDT

Morgan took this picture of Allyson sticking her tongue out. They both thought it was SO funny! I just had to post Morgan's photography on the website. Check out the photos page for another picture taken by Morgan. Maybe now that she's a "budding photographer", you'll see more photos of ME on here! ha ha

Today Grandma and Grandpa Kelso arrive from North Carolina. Morgan is SO excited about seeing them this afternoon. She made me promise that they'll be here to pick her up from school (I hope their flight isn't delayed!). She's psyched about her Princess birthday party at her school tomorrow. After celebrating her birthday in various fashions for almost two weeks now, I'm glad that JUNE 16th (her ACTUAL birthday) is here!

Allyson seems to have a bit of a cold/cough. She awoke Monday night with a fever and was coughing with a lot of congestion. We removed the NAM to help her breathe better (it makes a BIG difference when she has a lot of secretions). Her fever had subsided yesterday morning, but she was pretty sleepy all day. She has an appointment with Dr. Huang today for her six-month check-up and shots. We'll see if she has an infection and needs antibiotics too. She seems to be coughing less today, but we've continued to leave the NAM out since Monday night, so that could be helping things seem better.

Happy Wednesday to you all! Surgery is three weeks from today - woo hoo! :-) We'll post more after Ally's appointment with Dr. Huang and Morgan's birthday celebration tomorrow.

Kristin

Monday, June 13, 2005 9:29 PM CST

We saw Dr. Kay, the Orthopedic Foot Specialist today. And for those of you keeping track, we now have THREE doctors whose names sound like letters of the alphabet, "C" (Dr. See, GI), "T" (Dr. Vachiramon, aka Dr. T), and "K" (Dr. Kay). There's also a Dr. G (Dr. Groper who assists Dr. T - the nurses started calling him "G" as a joke!). By the time Allyson is 2 years old, we'll probably have half the alphabet listed. ha ha :-)

Anyway, I really liked Dr. Kay. He and one of his residents assessed Allyson and said that her bone formation seemed fine (they'll do x-rays in the fall) and that the flexibility in her legs and feet was satisfactory for her size and age. He recommended surgery to close the clefts in her feet when she's 12-18 months old. He explained that this was NOT emergent surgery and that she should be able to walk without any problems and without special orthopedic devices before surgery is done. The primary purpose for the surgery is to "narrow" her foot so that shoes will fit properly. Because of the clefts in her feet, her toes are much farther apart than they would be if she had the "missing" three toes in between. Dr. Kay "insisted" that we get through her other surgeries first (lip/nose, hand, and palate) and that the foot surgery could be done after those were completed. I felt VERY reassured by his evaluation due to his positive outlook and prognosis. We'll follow-up with him in November and schedule her surgery at that time.

Sunday, June 12, 2005 11:00 AM CDT

Good morning! Here's today's update to catch you up on the past few days...

Allyson had appointments on Thursday with Dr. Geller, ENT. and Dr. T, her Orthodontist. Both visits went well. Dr. Geller looked at her ears and indicated that both were well-formed. (Sometimes children with an Ectodermal Dysplasia syndrome have anomolies of their ears.) Her left ear canal is a "little small", but he will attempt to put ear tubes in both during her surgery on July 6th. Dr. Geller was very friendly and warm - he walked in smiling and cooing "Hi, Ally-pie!" Allyson gave him the biggest smile! He explained that his daughter's name is Allison and he calls her Ally - of course I didn't mind!

While sitting in the waiting room, I met another mom with her daughter who were waiting to see Dr. Geller. We started chatting and discovered that Emma (her child) and Allyson were born the same day. The mom mentioned that they were at CHLA for their Craniofacial "team" visit (where you see all the docs on the team - plastics, dentistry, ENT, speech, etc. We are having our meeting in October.) After glancing at Emma, I figured that she must just have a cleft palate because her lip did not appear to be affected. I was SHOCKED when the mom told me that Emma had a cleft lip (unilateral) too! She did not wear the NAM and she had surgery two months ago - performed by Dr. Reinisch. There was NO scar... there was NO lopsidedness...etc. I honestly had to look closely to see where the cleft had been. The mom described her cleft as "wide" in that it went from her right nostril to the corner of her mouth. Amazing! I didn't really need reassurance that Dr. Reinisch did GREAT work, however, seeing this little girl gave me so much confidence that Allyson's repair will be fabulous as well!

After lunch at the cafeteria, we headed back to the clinic to see Dr. T. We ran into our fellow "NAM" friends and chatted about our upcoming surgery dates. It seems like most of Dr. T's patients will have their repairs this summer. Another boy, Aiden, is having his surgery the same day as Allyson, and Kiera is having hers two days after. It's funny that these are the two families I've gotten to know pretty well! It will be wonderful being able to support each other during surgery day. Dr. T was pleased with Allyson's continued progress and will see us two more times before surgery. Dr. Yen (remember him from the "early" NAM days??) stopped in and said that Allyson's surgery should be fairly "easy" given that all the "parts" are in the right place now. Twenty-four days to go!

We had a great session with Pablo on Friday. Allyson sat up by herself (with the boppy pillow for support) for over 5 minutes. She tolerated an hour's worth of exercises and manipulation. Pablo began to write up his six-month assessment. We'll meet formally with the coordinator for Early Intervention Services on the 22nd for a comprehensive follow-up of Allyson's development. So far, she seems to be keeping up with her age group and even "excels" in some areas like attention span. She's able to stay focused on objects and activities longer than most babies her age. Our little over-achiever! :-)

Last night, Mark and Allyson went to the Moonlight Sleep Lab for her sleep study. They arrived around 9pm and Allyson got settled into her bed. It took 45 minutes to hook up the electrodes and sensors to her chest, head, and mouth. Mark said it was pretty interesting to watch. Mark was able to sleep in the room next to Ally's. She only awoke one time and quickly went back to sleep. The technician indicated that the study went well and she didn't see any problems from her vantage point. We should receive a full report from the Pulmonologist at our appointment on the 28th. Mark and Allyson were back home by 6:30 this morning. I tucked them both into bed and waited for Morgan to awake. As I'm writing this, Allyson is STILL asleep and it's 10am!!!

Morgan and I enjoyed our time together last night. We baked cookies, painted our toenails, and stayed up late (9pm for her!). When I told Morgan that Daddy was taking Allyson to get some sleeping tests done, she replied, "Just you and me are staying here? Like before?" I guess she was recalling all the times we spent together when Mark was away and before Ally was born. It was sweet!

Tomorrow we have an appointment with the Orthopaedic Foot Specialist, Dr. Kay. We received a call last week that they could fit us in on Monday. I'm curious to hear his assessment of Allyson's feet, toes, ankles and functionality. Oh, and for anyone keeping track, this is my 6th trip to CHLA in less than two weeks! Yes, June is our busiest month yet! :-)

Hope you had a great weekend! Much love and hugs to everyone who continues to follow our journey. I know there are MANY people who read these updates without fail and don't post in the guestbook. That's okay... we KNOW you're there, but if you want to say "hello" every now and then, we'd love to SEE your words in print.

Our prayers continue for so many others who are facing challenges in their families right now...Hayden and his family, The Rainwaters, The Crandells and McKays, Uncle Loren, The McCauleys, Kristi Saemann's father and the Zabinski family, and many more who face personal struggles daily... We're all in this together and I pray that your hope for us will lead back to your own families and help you all "deal and heal."

Much love always,
Kristin

Wednesday, June 8, 2005 11:33 AM CDT

Greetings! Teetay and Geep are back in Virginia now... I hear the heat is sweltering, but their a/c kicked on while they were away, so all is well! We had a relaxing last day with them on Monday. Morgan was feeling "a little sick" so I took her to the doctor for some allergy medicine and cough syrup. She just has a cold/cough which should work itself out over the next week. In the afternoon, the 4 "girls" visited the "old" big park which now has brand new equipment! Morgan was thrilled! We also had a little birthday party for Morgan on Monday night. She opened her presents from Teetay and Geep, and we celebrated with cupcakes and Disney Princess decorations. While devouring her second cupcake (the icing mostly!), she said to Teetay, "this is the best party!"

Yesterday, Mark and I took Allyson to CHLA for an appointment with the surgeon who inserted her g-tube. He was REALLY there this time! Unfortunately, he was not able to replace her tube with a button. This will be done under anesthesia while she's having her lip repaired. The surgeon explained that while he HAS done the switch in the office, he wouldn't recommend it if this was his child. Dr. Stein said the process is like pulling a small sphere through a tiny hole... it's possible, but painful. Mark and I agreed that we didn't want that done if it would be painful to Ally. So... we shall wait another 4 weeks for the new tube. Dr. Stein DID shorten the tubing, so there's less to get in Ally's way now as she tries to roll over and spend time on her tummy. It was a quick visit, but at least we know what's happening now!

Tomorrow I'll take Allyson back to CHLA to see the ENT (her first appointment with him) and also Dr. T for her regular ortho appointment. I'm assuming the ENT will agree to put in ear tubes during the lip repair surgery. This seems to be SOP for children with cleft palates. Although she's only had one ear infection, she runs the risk of having chronic infections due to the increased secretions and poor drainage as a result of the cleft. I'm curious to hear what he has to say about all that!

On Saturday night, we are scheduled for a sleep study to complete Allyson's pulmonary evaluation. While we don't think that there are any respiratory concerns while she's sleeping, her doctors explained that the sleep study puts the "icing on the cake" as far as her comprehensive work-up goes. Mark has volunteered to take Allyson to the sleep lab (he gets to sleep there too) and stay with her overnight - it actually sounds pretty cozy. They will begin the study at 9pm and conclude at 5:30am. Since Allyson generally sleeps through the night, they should be able to get a thorough study completed.

So, that's our week in a nutshell. Pablo visited on Monday and will return this afternoon and on Friday to assist with Allyson's "exercises." She is getting stronger and more comfortable in a sitting position. We've also introduced tastes and smells to her (using diluted extracts) and she seems to enjoy the stimulation of her senses. We're continuing to work on her flexibility in her hips and shoulders and encouraging her to rollover. Her physical and mental development is progressing on track with her age so we're very pleased about that!

Have a great day! Happy birthday to Grandpa Kelso and cousin Taylor today!

Kristin

Sunday, June 5, 2005 11:24 PM CDT

We're back from our weekend trip to Disneyland and California Adventure! Before I highlight all the Magic Kingdom happenings, let's discuss the "other" Mickey we were scheduled to see on Friday...

When we arrived (early!) to CHLA Friday morning, we walked into an empty waiting room at the pediatric surgery clinic. The receptionist gave us a puzzled look when we said we had a 10am appointment with Dr. Stein, and asked if this was an emergency and were we to have him paged. Of course, it wasn't an emergency, we had a scheduled appointment. Well, the doctor "was not in", as the saying goes... a nurse looked at Allyson's g-tube and said that everything looked good. Everyone apologized for wasting our time (we should have received a call to cancel the appointment) and we were off to Disneyland - at least we were already 2/3 of the way there. It would have been more upsetting to drive all that way in rush hour traffic just to turn around to drive home again! So off we went! (Our appoitment was rescheduled for Tuesday morning, by the way...)

After having lunch, we met up with Teetay and Geep inside Disneyland. Morgan was thrilled to see so many characters and was VERY "into" getting their autographs! She told Mark and I that she'd greet the characters "by herself" from the get-go. We took a ride through Small World FIRST (it's become our tradition!) and strolled through Mickey, Minnie, Donald and Goofy's houses in Toontown. By the end of the day, we were all pretty pooped. We caught the parade (literally!) as we were exiting. Our day rounded out with a quick swim and dip in the hot tub at the hotel and dinner out (during which Morgan fell asleep in Geep's lap.) We vowed that we'd return to the hotel mid-day on Saturday for Morgan (and others of us?!?!) to get a nap.

On Saturday, we got an early start as we had breakfast reservations to dine with the Disney Princesses at 8am. The food was delicious and we were graced with the presences of Belle and The Beast, Cinderella and her Fairy Godmother, Sleeping Beauty, Alladin, and Mary Poppins. Morgan was a little less enthusiastic around the real-life characters, but enjoyed wearing a princess crown and seeing all of her idols in person. Because of our early start, we were able to knock out all the rides in Fantasyland in about two hours. We also squeezed in the Winnie the Pooh ride and received hugs and autographs from Pooh, Eyeore, and Tigger as well. We kept our promise to return to the hotel for lunch and a nap (everyone got a little shut eye!). In the afternoon, we visited Disney's California Adventure where Morgan got MORE autographs, went on the rides of Bug Land (a la Bug's Life) and we all enjoyed the Playhouse Disney musical review. Mark and I ventured off on our own to go on some "big kid" rides and have dinner alone. Teetay and Geep took care of the girls' dinner, baths, and bedtime back at the hotel.

Everyone slept a little later this morning... three days at Disneyland takes its toll on "kids" of all ages! We took a final ride on Small World and attempted to visit Stitch in Tomorrowland. Unfortunately, Stitch was out surfing, so we'll have to catch his interactive up-close-and-personal show next time. We were on the road a little after 12 noon and made it home without too many traffic snarls.

We all had a wonderful time!!! Allyson just went along with everything without a fuss. If she could tell us, I think she'd say that her favorite part was Small World - she seemed to enjoy the colors, lights, and sounds of it! We took tons of pictures, so I'll probably continue to post new ones all week. I just love this one of Ally in her Golden Anniversary Mickey Mouse ears! Disneyland is 50 years old this year... in case you haven't heard!

Hope you had a good weekend! Hugs to all of you who follow Ally's journey so faithfully. We love you and your support means so much to us!

Kristin

Thursday, June 2, 2005 10:58 PM CDT

Dr. T said Allyson's nose looks great! He just wants to stretch the columella a little more and she'll be ready for her surgery. Dr. Reinisch, her Plastic Surgeon, stopped by to take a look at Ally and couldn't believe how much she's changed. He said we're all set for surgery on July 6th. Woo-hoo!

We're off to Disneyland tomorrow after seeing the g-tube surgeon and hopefully getting the "mickey button". Yes, it's REALLY called that... I don't just have Disneyland on the brain!

Allyson's newest pictures show off her tummy time tolerance and her "almost" sitting up. Our goal is to have her holding herself up in the next month or so.

Have a great weekend! We'll be back on Sunday night!

Kristin

Wednesday, June 1, 2005 12:16 AM CDT

Greetings! Happy June! Your long-awaited journal update is finally here...

We had a wonderful trip to Minneapolis - as Aimee and Teetay have both posted about it. Our travel days were uneventful or the most part - other than a two-hour delay in Denver and a later-than-expected arrival into Minneapolis. Morgan and Allyson handled it all well. It was so great to see Aimee meeting us at the airport and also greeting her family and Jim and his family when we arrived at the hotel. I couldn't have been happier for the newlyweds and the way they have blended their family and friends! We were so touched by everyone's kind words for us and to hear that so many people in Jim's family had been following Allyson's journey. I was moved to tears when Jim's aunt spoke of her church's congregation in Council Bluffs, Iowa, praying for Ally on a regular basis. I knew that Ally's story had taken the west, east, and south by storm, and now, it appears that she's loved in the midwest too! "Awesome" is all I can say...

Our long weekend was filled with activities - three trips to the ENORMOUS Mall of America. We saw "Madagascar" which I highly recommend to kids of ALL ages. I think Mark and I laughed more than Morgan did! Mark and I joined other members of the wedding party for a "boys and girls night out" visiting the bars of MOA, playing darts, and being entertained by the dueling pianos. On Saturday, we were back at the Mall for Morgan to enjoy "Camp Snoopy", the indoor theme park, and Mark and Geep flew "head to head" in the flight simulator. Everyone had a great time! Mark and I attended the rehearsal dinner alone at a fabulous restaurant on Lake Minnetonka called Lord Fletcher's. It was nice for us to have dinner and adult conversation with the grown-ups! Sunday was "the big day" and Mark hung with Teetay, Geep, and the girls while I attended to my bridesmaid's duties. Everything was perfect and I know that Aimee and Jim felt the love of everyone at their wedding. We returned home Monday afternoon - and aside from some Memorial Day beach traffic on the Pacific Coast Highway, our trip went well.

NEWS FLASH-- Allyson now weighs 13 pounds, 5 ounces!!!!!!!

Yesterday, Allyson had an appointment with the Orthopaedic Hand Specialist at CHLA. (She will see the foot specialist later this summer). Dr. Wright was very knowledgeable and recommended that we surgically separate the 4th and 5th fingers on Ally's left hand. Dr. Wright would like to do this surgery in the fall (after the lip but before the palate). She suggested that it would be a tedious surgery that would involve creating a separate tendon for the pinky finger. There are separate bones in each finger, but they probably share a tendon. The pinky may not be as flexible after surgery as her other fingers, but physical therapy will help with that. I enjoyed meeting this new doctor and I'm confident that she'll provide Allyson with the best hand care possible. We also had a new splint made for the left hand to assist with stretching Ally's fingers at night. She had outgrown the first splint that was made in the hospital 2 1/2 months ago.

Today, we have an afternoon visit with Pablo and the PT and OT. Tomorrow, I'll head back to CHLA to see Dr. T (only three more NAM visits!) in the afternoon...then we'll turn around and drive back to CHLA Friday morning (all 4 of us!) to see the surgeon who placed the g-tube. We're hopeful that he'll change it to a low-profile tube and a button during this appointment. After Ally's appointment, it's off to Disneyland to meet Teetay and Geep and celebrate Morgan's 4th birthday (a little early!).

So, it's time to unpack from last weekend and repack for this weekend. Thanks again for keeping us in your thoughts and prayers! We love you all!

Kristin

P.S. Here's the "Welcome to Holland" message that has been referenced in the guestbook recently. It was sent to me back in January by my cousin, Mary DeHoyos, in San Antonio.

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this....

When you're going to have a baby, it's like planning a fabulous vacation trip-to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the final day arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland??" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a differnt place. It's slower paced than Italy, less flashy than Italy. But after you've been there a while and you can catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that is where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever go away...because the loss of that dream is a very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the lovely things...about Holland.

Thursday, May 26, 2005 8:09 AM CDT

Good morning! We're off to the airport to head to Minneapolis in about 45 minutes from now. There won't be any journal updates until Monday evening or Tuesday once we return.

Everyone is excited about our trip. Morgan told me she is going to run to Aimee in the airport when she picks us up... just like she does when she sees Teetay. That's quite a compliment, Aims!

Mark checked out The Mall of America website last night and is psyched to fly the "Aces" simulators - one of the many amusements THE MALL has to offer. He "thinks" he can still remember "how." :-) hee hee

I hope everyone has a safe and happy Memorial Day weekend. We'll be having a great one, I'm sure!

Kristin

Monday, May 23, 2005 11:08 am CDT

Just a quick snipet (sp?) to tell you about my morning and how stinkin' precious Morgan is... not only is she "the sweetest girl in the world", but she's also an awesome big sister (wonder where she got THAT from?!?!). I just returned from dropping Morgan off at school with Allyson in tow. Mark usually takes her to school, so this was a special treat to be able to show off Allyson to her friends. She beamed when we walked in the classroom and said "come here, friends, and see my baby sister." Approximately ten three and four year olds gathered around Allyson's carrier to take a look at her. One little girl said "ooh" and pointed to Allyson's nose. Morgan replied back to her sweetly, but matter-of-factly, "it's not 'ooh', Sante', it's her cleft lip and it doesn't hurt. The doctor is going to fix it and she'll have a nose and mouth like mine." Another boy said, "what happened to her fingers?" Morgan looked at me (puzzled) and then back to the boy and said, "nothing happened to them... they're just fine. Look, she can grab my finger" and Morgan reached in to touch Allyson's hand and Ally responded by wrapping her fingers around Morgan's. None of the kids said too much after that. I'm so proud of how well Morgan handles everything! She then gave me a hug and told me that she would be a good girl at school today. She also said "Mommy, you need to take Allyson home now. She's too little for school and she needs to take her nap." So off we went! :-) Hope this story brought a smile to your face as it did to mine! Have a great Monday!

Sunday, May 22, 2005 6:53 PM CDT

Happy 5 month Birthday to Allyson!!! My how time flies!!

What a fun weekend we have had! As I write this, Allyson is just awaking from a long nap, Morgan is drying off from playing in her inflatable pool, Mark is on his way to Pensacola, and I am trying to decide if I need some self-tanner to cover my strap marks before Aimee's wedding next Sunday. Whew! Decisions...decisions... Let me tell you what we've been up to!

On Friday, Allyson and I spent the morning catching up with friends and co-workers at the Navy Exchange. I also sat down with my boss to receive my annual review (while Allyson sat on my lap). The review was good, and I was pleased to learn that when/if I choose to go back to work, I've earned a small raise. Woo-hoo - every little bit helps - especially since I've been on unpaid leave since March! After our visit, we ventured over to the commisary and bought groceries. Ally just takes it all in stride - smiling and cooing as I wheeled her through the store.

The four of us headed to the beach Saturday morning. It was a gorgeous and warm day (although NOT the triple digit temps that Texas has experienced) and the Pacific Ocean was still chilly, to say the least... read Mark's post in the guestbook for more info on his "arctic" body surfing experience! We ran into new friends, Toni (my nurse post-delivery) and her kids. Morgan played with Carly and Colten while Mark "surfed" (ha ha!) and Allyson snoozed in her carseat. I wasn't prepared with a good novel this trip to the beach since I thought I'd be busy watching out for everyone, so I sat and looked out into the crashing waves and marveled at the power of the ocean. We really had a great time and enjoyed being together as a family! Mark and I had some time to catch some more rays on the patio (this time with a new novel - I actually finished the one I started on Mother's Day!) once we came home while both girls took naps. I "escaped" for a few hours Saturday night to play Bunco with the squadron wives while Mark enjoyed being with Morgan and Allyson before leaving for Pensacola today.

After Mark departed this morning, Morgan, Allyson, and I went to the Seabee Days Fair held at the Port Hueneme Navy base. Morgan played games and was thrilled with each prize she won. She loved going on the rides amd wasn't afraid to go on anything by herself. I told her that she had to be a big girl and go on the rides alone since I had to stay with Allyson. Morgan even wanted to go on the ferris wheel, but Mommy didn't think that would be a good idea alone. Her favorite experience was riding a pony - she loved every minute of that! After a couple of hours at the fair, we were all hot and tired and ready to come home.

So, that's our weekend in a nutshell. Mark will meet with the head Naval Neurologist tomorrow morning and complete his testing on Tuesday. He returns home on Wednesday and then we all leave for Minneapolis on Thursday. So, we have another busy week ahead as I "go it alone" for the first time! Fortunately, there are no planned doctors' appointments this week. Hooray for that! I'll need all my spare time to get us ready for our trip.

Hope you all had a good weekend as well! Thank you for being a part of our lives and our network of strength!

Kristin

Thursday, May 19, 2005 9:44 AM CDT

SAVE THE DATE! SAVE THE DATE! SAVE THE DATE!

The 1ST ANNUAL RALLY FOR ALLY will be held on Saturday, July 23rd, 2005 in Washington, DC to raise funds and awareness for the National Foundation for Ectodermal Dysplasias in honor of Allyson. It will be a fun, family-oriented outdoor event - Stay tuned for more details!

** If you would like to have direct email communication regarding this event or to volunteer on the committee, please email Ashli, Committee "Chair-Aunt" at AshliAGM@aol.com - thanks! **

More details to come!

We've had a great week so far. Allyson is feeling better and her ears showed no signs infection at her doctor's appoinment this week. She saw the Pulmonary doctors at CHLA on Tuesday and they were please with the sounds of her lungs. We will continue to do the albuterol treatments until September. Hopefully, Allyson's lungs will show signs of healing on the x-rays and we can discontinue the breathing treatments then. She has a follow-up with Pulmonary at the end of June - just before her lip surgery. The doctors also indicated that another Swallow Study would not be recommended until after her palate is repaired this fall/winter. Even IF her swallowing mechanism has improved, there's still a good chance that she'll aspirate because of her cleft, so it's best to wait until the palate is closed. We were hoping to get the "okay" for a Swallow Study sooner - even to feed her small amounts by mouth while she continues to get the majority of her nutrition through the tube. Of course, being SAFE and keeping Ally healthy is the number one priority.

Our sessions with Pablo have gone very well this week. We've introduced new exercises like sit-ups, vestibular motion, and connecting hands to feet across her body. We're also using a soft-tipped baby spoon and vibrating toys around Allyson's mouth and cheeks to further oral stimulation. Her tolerance for all of this is amazing! Mark, Pablo, the OT and PT, and I are all very pleased with her progress.

Today we see Dr. T for our regular check-up. Allyson has had some bleeding in her left nostril several times this week. However, we can't see a sore, so I'm not sure what the cause is. We've also had "tape troubles" again. The hospital is no longer providing the steri strips that we use to tape everything and we haven't found a pharmacy that will fill the prescription. We purchased the tapes over-the-counter at the drug store ($9 for 30 tapes which last about a week!), but they don't seem to stick as well as the ones the hospital provides. They are exactly the same, but maybe their shelf life has run out. Needless to say, it's been frustrating having to not only change the NAM daily, but also retaping everything two or three times a day. Maybe Dr. T will feel sorry for us today and give us some of the "good" tapes!

We're looking forward to spending time together this weekend before Mark leaves for Pensacola on Sunday. The weather has been beautiful and "summer-like", so we've promised Morgan and trip to "the beach park." Hope it warms up and dries out in Minneapolis before we head there next Thursday! We just might have to wear socks with our sandals if it doesn't!!!! :-)

Have a great day! Thank you for all of your thoughts and prayers. I love reading the guestbook entries daily. I wish I could personally respond to each of you. Please know that your WORDS mean so much to all of us!

Love,
Kristin

Tuesday, May 17, 2005 11:30 AM EDT

SAVE THE DATE! SAVE THE DATE! SAVE THE DATE!

The 1ST ANNUAL RALLY FOR ALLY will be held on Saturday, July 23rd, 2005 in Washington, DC to raise funds and awareness for the National Foundation for Ectodermal Dysplasias in honor of Allyson. It will be a fun, family-oriented outdoor event - Stay tuned for more details!

** If you would like to have direct email communication regarding this event or to volunteer on the committee, please email Ashli, Committee "Chair-Aunt" at AshliAGM@aol.com - thanks! **

Stay tuned for more details!


Sunday, May 15, 2005 12:53 AM CDT

Hello everyone! Hope you're doing something fun this weekend like we are. Let me bring you up to date on the past few days.

We had the privilege of having TWO playdates this week. First, Allyson and I met another mom, Amy, and her son, Aiden, early in the week. Amy and I connected through Cleft Advocate... her son was born Jan. 31st with a unilateral cleft lip and palate. Aiden had his lip repaired May 3rd (he did not wear the NAM device) and is doing great! Amy and I had talked on the phone and communicated through e-mail over the past few months, but we met IN PERSON for the first time this week. It was great to get together and I hope we'll be able to do it again sometime soon!

On Friday, Allyson, Morgan and I, visited our friends up the street for lunch and play. Adrienne and her sons, Parker and Ian, became a NEW friend at the beginning of this year when Morgan and Parker "ran into" (not really!) each other while riding bikes. Coincidentally, Adrienne is very good friends with Toni, who was my WONDERFUL NURSE in the hospital and took care of me the first day after Allyson was born. Of course, I was floored when we made the connection! Long story short, Toni and her two kids also met up at Adrienne's house on Friday and we had quite the reunion! The kids played wonderfully and we all chatted like we were old friends. I'm sure we'll be getting together again soon as well!

In between these playdates, we began to notice that Allyson had a little cough and more congestion than normal. She also spiked a fever on Wednesday afternoon. I took her to see Dr. Huang who discovered that she has bronchitis AND a double ear infection! So, we got a heavy dose of antibiotics in the form of a shot and a prescription. Ally's fever only lasted a few hours and she seems to be on the mend.

We also saw Dr.T and had our regular visits with Pablo and another OT that is now working with him. Nothing "new" to report there! The nose stents are larger and some other adjustments were made to the NAM. Dr. T says that "she looks good" and thinks we'll be "done" in about six weeks. Since surgery is about nine weeks away, Allyson will wear the NAM in its "final state" for the last three weeks or so before surgery... in other words, no further adjustments will be made.

Yesterday, we all went the The California Strawberry Festival held at Oxnard College. It was a VERY warm day here and the heat started to get to all of us after just a couple of hours. Morgan loved going on the rides and seeing all the strawberry "stuff"... from food to drinks to crafts! Allyson tolerated everything like a champ and Mark and grew weary standing in lines and carrying Morgan and trying to keep Allyson cool! It was a fun time, and now we can cross it off of our "things to do while living in southern California" list. :-)

Today is another beautiful day! We're having a relaxing morning before heading to a squadron wives' meeting and birthday party this afternoon.

This next week will be full of more appointments at CHLA - we meet with the pulmonary doctor on Tuesday and Dr. T on Thursday. Mark will travel to Pensacola next Sunday and spend two days there getting his head "checked out" (literally!) and will return on Wed, May 25th. We'll turn right around and head back to the airport on Thursday when we ALL fly to Minneapolis for Aimee's (numbersgirl1) wedding.

So, as usual, we have busy days ahead... thank you for your continued prayers and well wishes! It means so much to all of us!

Kristin

Tuesday, May 10, 2005 8:27 PM CDT

Hello to all of the "update withdrawalers"! Is THAT a word??? I think not! Anyway, in the midst of appointments last week and Ashli's visit and my "alone" time on Mother's Day, I guess I gave myself a "week off" from updating the journal as well.

So let me bring you up-to-date...

The visit with the GI Doc, Dr. See, went well last Wednesday. She still wants to do the endoscopy to see Allyson's anatomy from the "inside out". We are awaiting authorization from our insurance for this procedure and aim to have it done before her lip repair in July. Dr. See also noticed that Allyson has a granuloma (medical term #562) around her g-tube. A granuloma occurs when "extra" skin grows in a ring-like formation on top of existing skin. It is literally burned off using silver nitrate. Ah, yes, another medical adventure for us! A granuloma is not a disease or infection - it's just "there" and if it's left to grow then Allyson would have a funnel/tunnel (?) of skin that grows around her g-tube. The doctor did the first treatment in her office last Wednesday and we're following up at home every three days. The burned skin turns black and falls off. Fun, huh?

The appointment with Dr. T was uneventful last Thursday. Additional adjustments were made to the nose stents and to the NAM itself. Allyson's nostrils are continuing to form as the nose stents push them open and her columella is still lengthening. She fussed for a little bit after the adjustments were made, but seems used to it now... just in time for another adjustment tomorrow!

Ashli arrived on Saturday and we all spent the afternoon at the Promenade in Santa Monica. Morgan LOVED seeing Aunt Atchwee and danced and played and sang songs until she conked out in the back of the car driving home. I went out to dinner with some of the squadron spouses on Saturday night. They were celebrating getting "half way" through deployment and I was celebrating that Mark has been able to be at home these past three months! We had a great time and shared many laughs together.

I had a FABULOUS Mother's Day! Morgan and Allyson gave me "fun in the sun" gifts that Aunt Ashli helped them select. Mark and the girls gave me a gift certificate to buy new summer clothes. I also received beautiful flowers from my mom and dad (in addition to the gifts I opened the week before when we visited them) and a "mother's vase" from Mark's parents. My BEST gift of all was getting to go to the beach by myself and read a new novel and sit in the sun and be totally at peace. It was the best two and a half hours of my life!!! Okay, maybe that's stretching it a little bit, but I sure enjoyed it! Thank you, Ashli and Mark, for giving me that time to myself! While I was gone, Ashli took Morgan to the Ventura Harbor (as she posted in the guestbook) and Mark took care of Allyson and smoked salmon for our dinner. It was a great Mother's Day! Hope all the other moms out there had a great day too!

Ashli, Allyson, and I hung out on Monday and enjoyed the final day of her visit. After Pablo's visit in the morning, we tackled some "spring cleaning" projects. I also finished addressing most of Ashli's wedding invitations. We spent the rest of the day relaxing and talking and just "being sisters"! I was so glad she was able to visit and spend some time with us! Thank you!

I'll try to do a better job with my updates this week... Hope you all have a great one!

Kristin

Wednesday, May 4, 2005 9:57 AM CDT

Hello! We're BAAAACCCCKKKK!!! The trip home was uneventful. Both Allyson and Morgan did great on the plane. They each took a couple of naps and I got some rest as well. Morgan was THRILLED to see her Daddy again when he picked us up at the airport. Yes, he did miss all three of his "girls" a lot! We all slept well in our own beds and feel pretty well adjusted back to east coast time already!

Our trip to Virginia was wonderful! As Teetay wrote, I don't think we could have squeezed in one more activity!!!! It was great spending time with Ashli and TG and meeting their friends and seeing their newly remodeled house in Georgetown. Ash's bridal shower last Saturday was fabulous... great food, great gifts, and great friends of Teetay's that have seen Ashli and I grow up. Allyson and Morgan were exceptionally sweet and impressed the masses with their cheerfulness! It was also so good to meet TG's sisters, Megan and Melissa, and his niece, Jessica. I felt instantly connected with them as if they were my own sisters. The blending of these families has already occurred seamlessly. Morgan and Jessica were instant best friends and shed tears when it was time to say good-bye... quite a bond they formed in a few hours! Thank you everyone who wished us well and showered Allyson and Morgan with gifts. Your love and friendship means so much to all of us!

Allyson's orthopaedic appointment that was scheduled yesterday was cancelled because the doctor was out of town on an emergency. We have rescheduled our appointment for May 31st - the day after we return from our trip to Minneapolis for Aimee's wedding ("numbersgirl1" for you guestbook posters or "number one girl" as Teetay calls her!) So, I took advantage of ot having to drive to LA yesterday and unpacked our suitcases, caught up on e-mail, returned phone calls, etc. Allyson did see Pablo, the interventionist, and Joanne, the physical therapist, yesterday afternoon. Joanne follows Ally's physical development and assesses her every two weeks or so. Pablo assists with Allyson's development and helps us implement the exercises that Joanne has presribed. Joanne was pleased with Allyson's improved flexibility and range of motion in her shoulders and hips. She recommended additional exercises to strengthen the trunk and thighs that will help Ally sit up and later "scoot" when tummy time is a little less cumbersome.

Today we'll see Pablo again this morning to start these new exercises. Allyson also has an appointment with Dr. See, the gastroenterologist, later today. She'll evaluate her feeding regimen and may make changes to it or increase the volume now that Ally weighs more. I'm also hoping that she'll recommend another swallow study to see if there is improvement in Allyson's swallowing function. If she "passes", then we may be able to feed her some "solids" by mouth... such as small amounts of rice cereal and perhaps baby food in a couple of months. I'm probably jumping ahead of myself, but it's worth a try!

Tomorrow is our regular appointment with Dr. T and the NAM adjustment. Mark could see a change in Allyson's nostrils just in the five days we were away. I think Dr. T will be pleased with the changes in her nose and will most likely add additional soft liner to the nose stents in order to continue to reshape her nose.

So, that's our recap from the weekend and plan for this week. Hope you enjoy the new pictures. We took TONS while we were in VA, so I'll continue to update the photos throughout the week. This homepage photo was taken of Allyson and me before Ashli's shower on Saturday.

Happy Wednesday! Have a great week!

Love,
Kristin

Sunday, May 1, 2005 11:00 AM CST

We're having a great time in Virginia! I'll try to update the journal later... just wanted everyone to see the new pictures that I've finally figured out how to resize and have just posted on the website. Hope you're all having a great weekend too!

Kristin


Friday, April 29, 2005 7:38 AM CDT

TODAY is ASHLI'S BIRTHDAY!!!! HAPPY HAPPY!!!! Can't believe you're 29 AGAIN! :-) These balloons are for you!

We've made it to Virginia!!!!! HOORAY!!!! I see that Ashli posted a guestbook entry about our plane trip and arrival on Wednesday. Not too much more to elaborate... Both girls were great on the plane. The worst part was waiting in line for 45 minutes to get through security at LAX with Morgan getting tired, hungry, and having to go potty all at once... By the time we got to the front of the line, I managed to get all our "stuff" through the x-ray machine, but forgot to remove mine and Morgan's shoes, so we had to walk through the metal detector twice! Morgan was promised a Happy Meal once we got to the "other side", so we made it through without too much heartache. The flight was great... Allyson only cried a couple of times! The most crying she did was when I removed her from the carseat and carried her down the aisle so that Morgan could go to the bathroom. A friendly flight attendant offered to hold her for me while Morgan and I went inside the teeny-tiny bathrooms. Both girls took naps (at different times, however!) and were happy and content the entire 4 hours and 45 minute flight. Woo-hoo! Let's pray for another good flight on the trip back on Monday.

As you've read, yesterday was our big debut at Franklin Middle School. We were welcomed by a "cast of thousands" and spent the morning visiting with teachers, students, and "fans" alike. It was wonderfully meeting so many of Teetay's students... Chali, Allie, Christina, Meredith, and sweet, tall Sarah with her crutches! Morgan took to writing on the chalkboard in every classroom we visited while Ally bounced from the arms of teachers to students along our travels. During symphonic band class, Morgan played the timpanis, and received applause from the band. Teetay played the snare drum with one hand while holding Allyson in the other. The day culminated with Morgan "teaching" Teetay's infamous 4th period class about the letter "v" (this is what she had been learning this week at HER school). Everyone was so wonderful to us! It was pretty overwhelming and exciting and great ALL at the same time! Thank you, Franklin students and staff, for your hospitality!

Today we're meeting Aunt Ashli for lunch to celebrate her birthday. Morgan is making her ANOTHER birthday card as I type this, and precious Allyson is STILL asleep! Even with the time change, both girls have adjusted beautifully and have adapted their schedules to east coast time... probably better than I have. After lunch, Ash and I are planning to have some "sister" time while Morgan and Allyson stay with Teetay. We'll all meet up again at Ashli and TG's house this evening for Ashli's birthday shin-dig with a few of their friends.

I'll try to post some new pictures in a little while. Can't figure out how to resize them on Teetay's computer, but I'll contact "techno boy" back in Port Hueneme for some assistance! He should be awaking soon. :-)

Hope you all have a great weekend! We're looking forward to making more memories here and we won't let the impending rain dampen our spirits!

Love,
Kristin

Monday, April 25, 2005 11:56 PM CDT

Just a quick journal update... Allyson saw Dr. Huang, her pediatrician, today and he was very pleased with how healthy she seems. She weighs 11 pounds, 11 ounces and is 23 inches long (however, I think that measurement is off by an inch or so... she definitely seems longer and was squirming a lot during the measuring process!) Anyway, both figures place her in the 10th percentile on the standardized growth chart. Yeah! The better news is that her head circumference is in the 75th percentile. Quite a "noggin" on this girl! Allyson received her 4-month shots and did quite well. She even "performed" some of her exercises for Pablo when we had our session just 45 minutes after she had gotten the shots. She's successfully reaching for and grabbing objects that we hold in front of her and is still kicking at everything she can.

Our bags are packed and were ready to go! Just one more day to go! Morgan started putting things into her Minnie Mouse backpack tonight and is so excited about going to the airport and getting our tickets and giving them to the lady and flying on the airplane on Wednesday. Hope Allyson will be as great of a traveller as Morgan has always been!

Looking forward to seeing all the NoVa folks! Keep the rain away... I've forgotten what that's like!

Kristin

Sunday, April 24, 2005 9:38 AM CDT

Good morning! I know, I know... you're all thinking, "it's about time she updated this page!" Hopefully, you'll cut me some slack when I tell you that I've actually been able to have two "Mommy nights out" in row! Woo-hoo! So, let me get right to updating this journal for you.

Grandma and Grandpa Kelso left on Friday after a 10 day visit with us. They successfully mastered Allyson's "stuff" by mid-week and Mark and I were able to go out to dinner one night before they left. It was great to be out and act like grown-ups for a few hours. :-) What a nice treat! It was wonderful having Grandma and Grandpa visit us. I know they enjoyed all the time they were able to spend with both Allyson and Morgan - lots of holding and loving and playing going on! We miss you already and Morgan's already talking about going to Legoland in June when you return for her 4th birthday!

Allyson had her NAM adjustment on Thursday and Dr. T added additional soft liner to the nose stents. The stent that goes into her right nostril is twice as big as the one for the left. This is because her right nostril needs to "open up" more than the left. I'll post a picture of the NAM out of her mouth/nose on the photos page since you can't really see a difference when it's in. Suffice it to say that the right nose stent is about the size of an elongated pencil eraser! Yes, it does cause some discomfort (duh!) when we take it out and put it in, but Ally doesn't cry for long. We've also noticed that the color of her lip that's turned downward is changing. It's less pink now and almost the same color of her face. I'm not sure how this happens, but this is a GOOD thing! The prolabium SHOULD be "skin colored" on top and "lip colored" underneath so that it will "match" the rest of her face when her surgery is performed.

We've also seen improvement in her mobililty and flexibility thanks to the OT exercises we've been doing. While Ally has easily rolled from her side onto her back for some time now, she's recently shown us that she can move from her back onto her side. We hope that rolling over is the next step! We'll continue to "help" her through a series of hip rotation exercises. Allyson's back is getting stronger as well, and she seems pretty close to being able to sit up with minimal support. Of course, she's super at kicking and enjoys Morgan's interaction and help with her exercises. Allyson's packing on the pounds too. As of Thursday, she "weighed in" at 11 pounds, 5 ounces. We have her 4-month check-up with Dr. Huang tomorrow, so I'm anxious to see her weight and height and where she falls on the growth chart. We'll let you know.

As I previously mentioned, Mark's been parent-on-duty (to use a phrase that my cousins have used for years) the past two nights as I enjoyed some time "away" with the other squadron wives. I went to a fundraising demo at Dream Dinners on Friday. It's a fairly new company that started in Seattle and affords "busy people" the opportunity to prepare home cooked meals for their families at the Dream Dinners retail store. All the ingredients are pre-cut and pre-measured... you follow a simple recipe (I made chicken and dumplings) and assemble your meal. Then, you take it home and cook it or freeze it to have another time. THEY do all the prep work and clean up too. For every six meals purchased, Dream Dinners will contribute to our squadron spouse's club fundraiser. It was lots of fun and VERY easy and PERFECT for someone like me who likes to and wants to cook, but doesn't always have the time to. Last night I played Bunco with some of the squadron wives and relished in the girlfriend time. Mark was great with Morgan and Allyson and taking care of all the nightly duties including feedings, bathtime, storytime, and bedtime for both girls -hopefully he'll post on the guestbook about it!

Other than ALL that, we're having a fairly low-key weekend here. Yesterday, Morgan and Allyson and I went to the mall and shopped for our trip to Virginia and had lunch at Red Robin. Morgan has already asked this morning, "where are we going today?" Perhaps to the park or on a walk or bike ride later... Mostly, we'll be packing our suitcases and getting everything ready for our trip on Wednesday. Morgan is excited about going on the airplane to see Teetay, Geep, Aunt Ashli, Uncle Tommy, Nala, and Teetay's cats, Nilly, Mugu, and Timmy. She's promised me that she'll be a good helper to Mommy while we're traveling and I'm sure she will! We can't wait to see everyone in Virginia!

Hope you've had a good weekend! I'll udpate again before we leave on Wednesday.

Kristin

Sunday, April 24, 2005 9:38 AM CDT

Good morning! I know, I know... you're all thinking, "it's about time she updated this page!" Hopefully, you'll cut me some slack when I tell you that I've actually been able to have two "Mommy nights out" in row! Woo-hoo! So, let me get right to updating this journal for you.

Grandma and Grandpa Kelso left on Friday after a 10 day visit with us. They successfully mastered Allyson's "stuff" by mid-week and Mark and I were able to go out to dinner one night before they left. It was great to be out and act like grown-ups for a few hours. :-) What a nice treat! It was wonderful having Grandma and Grandpa visit us. I know they enjoyed all the time they were able to spend with both Allyson and Morgan - lots of holding and loving and playing going on! We miss you already and Morgan's already talking about going to Legoland in June when you return for her 4th birthday!

Allyson had her NAM adjustment on Thursday and Dr. T added additional soft liner to the nose stents. The stent that goes into her right nostril is twice as big as the one for the left. This is because her right nostril needs to "open up" more than the left. I'll post a picture of the NAM out of her mouth/nose on the photos page since you can't really see a difference when it's in. Suffice it to say that the right nose stent is about the size of an elongated pencil eraser! Yes, it does cause some discomfort (duh!) when we take it out and put it in, but Ally doesn't cry for long. We've also noticed that the color of her lip that's turned downward is changing. It's less pink now and almost the same color of her face. I'm not sure how this happens, but this is a GOOD thing! The prolabium SHOULD be "skin colored" on top and "lip colored" underneath so that it will "match" the rest of her face when her surgery is performed.

We've also seen improvement in her mobililty and flexibility thanks to the OT exercises we've been doing. While Ally has easily rolled from her side onto her back for some time now, she's recently shown us that she can move from her back onto her side. We hope that rolling over is the next step! We'll continue to "help" her through a series of hip rotation exercises. Allyson's back is getting stronger as well, and she seems pretty close to being able to sit up with minimal support. Of course, she's super at kicking and enjoys Morgan's interaction and help with her exercises. Allyson's packing on the pounds too. As of Thursday, she "weighed in" at 11 pounds, 5 ounces. We have her 4-month check-up with Dr. Huang tomorrow, so I'm anxious to see her weight and height and where she falls on the growth chart. We'll let you know.

As I previously mentioned, Mark's been parent-on-duty (to use a phrase that my cousins have used for years) the past two nights as I enjoyed some time "away" with the other squadron wives. I went to a fundraising demo at Dream Dinners on Friday. It's a fairly new company that started in Seattle and affords "busy people" the opportunity to prepare home cooked meals for their families at the Dream Dinners retail store. All the ingredients are pre-cut and pre-measured... you follow a simple recipe (I made chicken and dumplings) and assemble your meal. Then, you take it home and cook it or freeze it to have another time. THEY do all the prep work and clean up too. For every six meals purchased, Dream Dinners will contribute to our squadron spouse's club fundraiser. It was lots of fun and VERY easy and PERFECT for someone like me who likes to and wants to cook, but doesn't always have the time to. Last night I played Bunco with some of the squadron wives and relished in the girlfriend time. Mark was great with Morgan and Allyson and taking care of all the nightly duties including feedings, bathtime, storytime, and bedtime for both girls -hopefully he'll post on the guestbook about it!

Other than ALL that, we're having a fairly low-key weekend here. Yesterday, Morgan and Allyson and I went to the mall and shopped for our trip to Virginia and had lunch at Red Robin. Morgan has already asked this morning, "where are we going today?" Perhaps to the park or on a walk or bike ride later... Mostly, we'll be packing our suitcases and getting everything ready for our trip on Wednesday. Morgan is excited about going on the airplane to see Teetay, Geep, Aunt Ashli, Uncle Tommy, Nala, and Teetay's cats, Nilly, Mugu, and Timmy. She's promised me that she'll be a good helper to Mommy while we're traveling and I'm sure she will! We can't wait to see everyone in Virginia!

Hope you've had a good weekend! I'll udpate again before we leave on Wednesday.

Kristin

Sunday, April 17, 2005 3:39 PM CDT

Hello! Hope you've had an enjoyable weekend. We've been having a great time with Grandma and Grandpa Kelso since their arrival on Wednesday. I know I'm behind in my updates, so I'll get right to it!

Allyson had her NAM adjusted by Dr. T last Thursday. Grandma accompanied us to the appointment and got to see "first hand" how these weekly visits go. I think she best described it as "kind of zoo-ey!" Dr. T added more soft liner to the nose stents. It's quite a challenge to push them up into her nostrils now and causes her some discomfort when we take it out and put it in. The discomfort does not last long, however, and Allyson is back to her cheerful self after a few minutes. We've noticed two small sores - one on the underside of her lip and the other on the back side of the premaxilla. She's also had "noisier" breathing since the adjustment. We thought she would have just one restless night while she go used to it, but after another restless night Saturday, we've decided to take the NAM out for a day for the sores to heal and to help with some of the congestion. Other than that, Ally is doing well, and it was such a convenience to have the Kangaroo PET pump versus the bulkier one. Hooray for Dr. Huang for pushing for that!

Morgan and Allyson have had lots of fun with their Grandma and Grandpa. We've been to the "new, big park" and Morgan spun us around on the merry-go-round. I think she enjoys pushing it as much as riding it! We all went to Ventura Harbor yesterday and had lunch with Grandpa's cousin, Chip, and his wife, Bunny, who drove up from Manhattan Beach. Morgan thought their names were pretty funny and told them as much once she warmed up to them. We went on the carousel and played games in the arcade. Morgan loves to "shoot hoops" and is pretty good at it too! She's also played in the backyard doing "grandma's special twist" on the swing and playing catch with Grandpa. Morgan has entertained us with her imaginary games and "school teacher" instructions for us all.

Mark got the results of his catscan on Thursday. The area that was damaged is healing well, but it's not completely healed yet, so the scan was not read as "normal." He's not sure if he'll go to Pensacola this month or not. His doctor will be contacting the head neurologist there to determine if Mark should be seen there or if he needs to wait and have another catscan in a few months. Although he feels fine, the brain takes time to heal and we'll just have to wait it out. He was disappointed, of course, but understands that you can't rush these things.

So what's next for us? Grandma and Grandpa will be with us throughout the week. Morgan's doing great at preschool and we've talked to her teachers about moving her up to the 4-year old class soon. She's writing very well and can identify the beginning letter of any word you throw at her. She's on the brink of starting to read some words as well - she just needs a little more motivation. If there's space available, she may "move up" before the next school year begins in the fall. Allyson will continue to have visits from Pablo, the interventionist, and sees Dr. T again on Thursday. I think both Grandma and Grandpa want to go to this appointment. Mark has begun studying for "part 3" of his JMPE classes. He took his exam for "part 2" on Friday. And, for me (since many of you always ask and I never say anything about myself)... well, I'll continue to hold it all together for everyone...driving to appointments...learning to do Ally's exercises...going to the gym when I can...catching up with my friends at work when possible...coordinating activities for our squadron spouse's club, etc., etc. Hopefully, I'll be choosing a nurse this week so we can begin our respite care. I'm also really looking forward to our trip to VA on the 27th and hope there will be some R&R in-store for me there!

Hugs to all of you and thank you for your continued prayers for our family!

Kristin

Tuesday, April 12, 2005 9:45 PM CDT

Good evening! It's been a GREAT day here as you can see on Allyson's face. We had another 12 hour uninterrupted night. Yahoo! We had a few bumpy nights over the weekend, but nothing major. On Saturday night, one of the tapes holding in the NAM came OFF while Ally was sleeping. This causes the NAM to pull to one side and is obviously uncomfortable for her. After we calmed her down and took the NAM out for the remainder of the night, we frantically began our search for the "missing" tape and rubberband. It took MANY minutes to locate it - we actually thought Ally might have swallowed it, but common sense told us that this probably was impossible considering we hadn't heard her coughing or gagging prior to awakening... we DID find the mystery tape stuck to her ducky which she clings to and rubs against her face while sucking and soothing herself. Whew! What a relief that was... of course, all the commotion awoke Morgan at 4:30 a.m., but thankfully she went back to sleep easily and we managed to get ourselves to church Sunday morning without too many bags under our eyes!

Today Ally had her 3 month follow-up appointment with Dr. Davidson, the Pediatric Opthamologist. He said that Allyson's eyes looked very good and that we were doing a great job of taking care of them. Even though she is making tears now, we are still giving her artificial tears three times a day and lacrilube at night. There is no corneal scarring (which COULD result from the dryness and is associated with the Ectodermal Dysplasia part of her syndrome). Because Ally's eyes are looking so good, we don't have to see Dr. Davidson again until October. Yeah!

We also received REALLY good news that we'll be getting the Kangaroo PET feeding pump on Wednesday. Our insurance approved this portable pump that runs on a battery and comes with a fanny pack for portability outside the house. This will make our daily lives a LOT easier as we travel to doctors' appointments and just make leaving the house during feeding time POSSIBLE! Mark and I were thrilled with this news... you would have thought we'd won the lottery or something.

I can also report that Allyson now weighs 10 lbs, 11 1/2 oz. as of this morning. She's gained three ounces since Saturday and close to one pound since she was discharged from the hospital two and half weeks ago. We've started to increase her daily volume of formula. She's actually seemed hungry the past few days.

Mark had his catscan yesterday morning. He'll hopefully learn the results of that later this week. Assuming that his catscan is "normal", he'll make arrangements to go to Pensacola for his medical evaluation by the Navy doctors. Once that's complete, we'll know if/when he'll be meeting his squadron on deployment. Keep your fingers crossed for good medical reports where he's concerned!

We've had a wonderful Tuesday and we're anticipating the arrival of Grandma and Grandpa Kelso tomorrow. Morgan can't wait to see them! We asked her tonight what she wanted to do when Grandma and Grandpa were here and she replied, "play outside, read stories, do puzzles, paint pictures, play outside, do Grandma's special twist on the swing, read stories, and ALL the fun stuff!" And yes, that's word for word...

Have a great day!
Kristin

Monday, April 11, 2005 11:55 PM CDT

Hello! Sorry for the "blank" update earlier if anyone was checking... I've been trying to add a navigation bar to Ally's site inviting you to check out Cleft Advocate's Circle of Smiles web ring. After much frustration and reading tutorials about web rings (I had know idea what it was until I was asked to join one) and figuring out the difference between URL and HTML, I learned from the Caring Bridge customer service folks that this site cannot support the HTML format and therefore, I cannot add the navbar. Does this sound like GREEK to anyone else? Anyway, long story short... you can access the web ring using the second link below (under "links") and it will take you there. The Circle of Smiles has lots of children's websites on it as well as other cleft information. I think "Emily's Blog" is one of the best and it has really detailed NAM info on it. There's also one called "Brock and Chuck" and there are VERY graphic pictures of Chuck's lip repair surgery. Someone was taking photos in the operating room during the surgery. WOW, it's really amazing!

Anyway, I'll add a REAL update tomorrow after our follow-up appointment with the opthamalogist since it's late now and I need to get to bed! There are new pictures on the photos page though - I managed to get that done!

Love,
Kristin

Monday, April 11, 2005 2:15 PM CDT

Friday, April 8, 2005 11:37 AM CDT

Greetings on this beautiful Friday morning! Good news here... Allyson slept through the night for the first time with her feeding machine! Guess a full tummy is the "cure" for a deep sleep! Hooray! Also, her 9am follow-up appointment with the surgeon was cancelled, so I didn't have to hit the road at o'dark thirty this morning. Hooray again!

Before I get to today's complete journal update, I wanted to let everyone know that there is a new movie coming out today called "Smile." I think it's debuting on the west coast but should roll out to other cities over the next few weeks. The link is below and some of the proceeds from the movie go to Operation Smile. In 23 years since its founding in 1982, Operation Smile's volunteers have provided free reconstructive surgery to tens of thousands of children and young adults in 25 developing countries and the United States, bringing them new hope and new lives. It is a tremendous organization that has helped so many who would not otherwise receive medical care. I think Dr. Reinisch, Allyson's plastic surgeon, has participated in this organization as he travels to India twice a year to perform surgeries and train Indian doctors. This movie features a young girl born in China, who has a cleft lip and palate. She is hidden from the world by her family because of her disfigurement until a U.S. doctor travels to her country and performs reconstructive surgery. We plan to see the movie sometime soon - perhaps a date night for Mark and I when his parents are here next week!

So, Allyson has been having REALLY GOOD days this week. We've increased the volume/hr of her feeding and have knocked off one hour a day. She seems to be emptying better as well. We're venting less and that seems to have helped... either that or Ally's learned how to ease her gas pains naturally! Last night, she slept from 8pm to 8am! We awoke at 5am to refill the formula bag and were back to sleep ten minutes later. Allyson didn't need to be vented until she awoke this morning. Good news!

Allyson and I have ventured out everyday this week during our 9am-1pm "break." We visited the Navy Exchange and saw several of my co-workers. We also had a great time (ha!) grocery shopping at the commissary on Wednesday. Yesterday, Ally accompanied me to my nail appointment. I was in desperate need of a fill (since I had missed my appointment two weeks ago while we were still at the hospital!). Although the salon has a "no children allowed" policy, Allyson was able to be the exception since the salon owner is my stylist and she slept like a perfect angel during my appointment! Another client seated beside me didn't even notice she was there until she got up to wash her hands at the end of her manicure. Go, Ally, go!

Morgan definitely has spring fever and has requested to go to the "new big park where I had my Easter egg hunt and Teetay was there" (yes, that's exactly how she says it!) everyday after school. The two of us went one day and the whole family went another day. The past two days have been breezy and cool, so we've come home to play after school. Morgan is quite the entertainer and constantly keeps us amused with her singing and dancing. She's learning so much and impresses us with her vocabulary using words like "frustrated" and "communicating" and her writing skills are improving as well. We are truly blessed to have such wonderful daughters!

Hope you all have great weekend and are able to spend quality time with those you love!

Kristin

Wednesday, April 6, 2005 10:13 AM CDT

Happy Sunny Wednesday! Hope you've enjoyed seeing the new pictures on the photos page. Morgan and Allyson have both been full of smiles this week making our household extra happy!

Allyson has been doing very well. She got her NAM nose stents adjusted on Monday. Dr. T connected the two nose stents with soft liner and the stents now resemble a horseshoe. Over the next couple of months, he will continue to add material to the horseshoe as it lengthens Allyson's columella. This is the last phase of the NAM process, but it's also the longest phase as it's a slow process of stretching the tissue that separates her nostrils. We also have a "date" for lip repair surgery which is the proverbial "light at the end of the tunnel" as far as the NAM is concerned. Ally's lip repair will be July 6, 2005 at CHLA.

The g-tube feeding and maintenance is going well. We've adjusted some of Allyson's medications and the times they're given (there will be a NEW schedule posted soon!) and that has greatly reduced her spit-ups. We've also gotten better at the night routine. We're filling the feeding bag up to last all night long and only getting up when Allyson starts to stir. This usually happens once a night between 3 and 4 am. We vent her, burp her, and reposition her and she usually calms down and goes back to sleep within 45 minutes or so.

The interventionist, Pablo, has visited twice this week to help us with Ally's development. His services are provided through Early Intervention. We are working on Ally's flexibility in her elbow and shoulder joints. She's quite the trooper when it comes to doing her exercises. She can sustain about 20-30 minutes of activity before she tuckers out. We're also working on strengthening her head by having her follow objects with her eyes and turn her head from side to side and up and down. "Tummy time" is another activity which requires some creativity so that it doesn't interfere with the NAM or her g-tube. Mark and I are enjoying our play time with Ally in the afternoons. We're also starting to show Morgan the exercises so that she can be a part of the process as well.

We return to CHLA on Friday for a follow-up with the surgeon who placed the g-tube. Should be a quick visit! Traffic was a nightmare on Monday when I went to her appointment... three hours to get there and two to get home. Keep your fingers crossed for a better ride on Friday!

Hope everyone is having a great week!

Kristin

Sunday, April 3, 2005 9:11 PM CDT

Hope you all had a good weekend! We're settling into the NEW "normal" routine and getting more comfortable each day.

Mark and I were able to have a "date night" Friday night. It was the first time we'd been out alone since New Year's Eve. Teetay watched the girls while we went to dinner at Channel Islands Harbor. Morgan was a perfect angel and Allyson got into her groove soon after we left.

It was very sad saying good-bye to Teetay when she left Saturday morning and headed home to Virginia. Morgan accompanied me on the 3-hour round-trip to LAX and back. She entertained Teetay and I singing songs from Disney's Princess CD. She really can carry a tune and is so expressive when she sings! Her precious voice filling the car helped us keep smiling during our bittersweet good-byes. Morgan shed a few tears as well and cried out, "I miss my Teetay a lot!" several times on the ride home. She has formed a special bond with her for sure.

I "braved" the sunshine and 80-degree temps Saturday afternoon and granted Morgan a trip to the beach park (which she adores!) and toted Allyson along with us. Allyson rode the seesaw (seated in her carseat) with her sister and slept under the slide as Morgan propelled herself down it ten times. It was great to be "out" in the salty air and see Morgan enjoying herself so much.

Allyson's first night "without Teetay" sleeping in the same room went pretty well. We vented her g-tube and refilled the bag around 3am. Allyson didn't stir until 4:30am when she seemed a little inconsolable. After 20 minutes or so, she calmed down and went back to sleep. She's been sleeping close to twelve hours at night with just one or two short wake-ups during that time.

Sunday was another gorgeous day, although a bit cooler (like in the 70s!). After breakfast together and a leisurely morning, I took Morgan and Allyson to "Mommy's store" (the Navy Exchange) to pick up some much-needed Clinique items and other household essentials. I visited with some of my coworkers who couldn't believe how big Allyson was and how cute Morgan looked in her Dora sandals with her coral toenail polish! We hurried through the store in order to be home before Allyson's 1pm feeding and had just enough time to grab a Happy Meal for Morgan.

We spent the afternoon outside. I even remembered to water the flowers that Morgan and Teetay planted last week. Allyson lounged in her play dome and Morgan went high on her swing and dug holes in her sand box.

Mark got a lot of studying completed for his next JPME exam. This is the military master's-level correspondence course that he's been taking since last fall. I think we all felt good about what we were able to accomplish over the past few days. Yeah us!

All of us enjoyed the weekend together. Mark and I survived taking care of the girls alone and felt reassured that we can "do this". It still isn't easy, but it's definitely DO-able. Mark made a timeline listing all of Allyson's medications, feedings, treatments, and the times during the day that they're given. I'll post it on the photos page for everyone to see.

Thank you for all your thoughts and well wishes. We appreciate everything that everyone has done for us. God bless you all!

Love,
Kristin

Friday, April 1, 2005 9:57 AM CST

Hello and Happy April Fool's Day! This journal update will include a complete recap of Teetay's birthday yesterday - see new pictures on the photos page! Teetay had a wonderful action-packed day and received tons of birthday WORD gifts. Thank you all for rememebering her on her special day with posts in Ally's guestbook along with 145 e-mails she received at her AOL account.

First, let me explain this new home page photo. Allyson has trouble holding her pacifier in her mouth because of the NAM. Prior to her stay in the hospital and during when the NAM was "out", she had gotten quite adept at sucking on the pacifier and holding it in her mouth. Now, we've gotten really creative in choosing pacifier-holding-aids. This toucan, a present from Aunt Grammy and Uncle Poppy, works great! Teetay stuck the toucan's beak in the open hole on the outside of the pacifier and applied just enough pressure so that the toucan would help it stay in Ally's mouth. We thought this was hysterical and snapped this picture! We've discovered that any stuffed animal with a beak or a trunk serves this purpose well. :-)

Allyson has had two GREAT nights in a row. Much less spit-up and stomach discomfort. In fact, she was actually spit-up free for over 24 hours! Hooray! We've had a couple of "blurps" since yesterday afternoon, but nothing major. Seems like the combination of erythromicin and zantac are helping to keep things under control.

Yesterday, Morgan decided that Teetay should go to Chuck E. Cheese for her party. The four of us "girls" had a fun time! Morgan performed on-stage with Chuck E. and Allyson snoozed in her stroller. Teetay got the high score on the frog-catching-bugs game and climbed in the tunnels suspended from the ceiling! (Okay, it was actually Morgan that did all that!)

Allyson had an appointment with her pediatrician, Dr. Huang, in the afternoon. Dr. Huang thought Ally looked good and sounded healthy. She also weighed in at 10 1/2 pounds. She's back on the weight chart in the 10th pecentile! Her head measument is above 50th percentile. Both are great signs that she's getting healthier and that her mental development has not be affected by the slow down in her physical development. Dr. Huang will see Ally again in about 3 weeks to get her 4 month shots. Hard to believe she's THAT OLD already!

We also had our first official visit with the Early Intervention vendor (Amigo Baby) and the Occupational Therapist. Mark and I received instructions on the exercises we'll be doing with Ally. Overall, she's in very good physical and mental shape. We were told that she has very strong biceps and a strong center core. Must be from all those trips to the gym and additional yoga classes she's been taking! ha ha The OT explained that Allyson pronates (all you runners will know that this means) when she brings her arms into her chest. This means that she rotates her arms INward towards her body and locks her hands (i.e. the praying position that we think is so precious). We'll do exercises with her to help her learn to rotate her arms OUTward (think palms up) and bring her arms up above her head (like you would do to make a sun). Because of the pronating, she has some tightness in her elbow and shoulder joints. Her leg movement and flexibility is good. She also needs some oral stimulation exercises which we'll be doing as well. The OT was impressed with her sucking abilities and that she didn't seem to have a LOT of oral sensitvity especially considering all the "stuff" that's been done to her mouth and the negative effects of having been bottle fed. It was an informative visit and we're looking forward to learning more each week.

After all the appointments and visits were completed, we finished off Teetay's birthday with a confetti cake with rainbow icing. Morgan picked the icing colors (there were FIVE of them) and helped me decorate Teetay's cake. There were LOTS of sprinkles on it as well. When I asked Morgan how many candles to we should put on the cake, she first said "five" and then revised it to "ten." So, I guess that means that Teetay was celebrating her 10th birthday yesterday! Age is jsut a state of mind, right?

It was a fun day for all of us... we shared many laughs over SILLY things and enjoyed being together!

Happy Friday to all - watch out for those FOOL jokes! Have a great weekend!

Kristin

Wednesday, March 30, 2005 11:40 PM CST

Update in Teetay's words - yes, Mrs. Matus' 8th graders, I'm plagerizing... don't try this at home...

The 'new normal' has changed once again. Yesterday Kristin, Mark, and Allyson traveled to Children's in LA for the new NAM device with nose stents. Dr. Yen and Dr. T exclaimed, "The nose looks good!" They are joyful over 'their progress' each time they see Allyson and as Mark jokingly warns them, "don't break your arm patting yourselves on the back, Doc." The progress, of course, is Kristin's and Mark's diligence and patience in securing the NAM, cleaning the NAM, taping her lip, and making sure it is properly adjusted in Allyson's mouth! But, they are willing to let Dr. T and Dr. Yen 'take full credit' as long as it is helping Allyson. After the new NAM was positioned, checked, adjusted, and Allyson was comfortable they left Children's to travel NORTH toward 'home' with a stop in North L.A. at the gastroenterologist, Dr. See's office. Dr. See is the pediatric GI who first mentioned the G-tube for Allyson about a month ago.

Now, for the G-tube update. The tube itself is working just fine. Dr. See adjusted it at the entry point by loosening it(like a toggle on a straw - that's about the diameter of the g-tube) and Mark and Kristin actually got to SEE how it is IN Allyson's stomach. (Mark was SITTING DOWN, thank goodness - a bit daunting to see a HOLE in your child's stomach) The adjustment had nothing to do with how well it works, but it needed air to heal around the entry point. It may be slightly infected. Dr. See believe the reason Allyson is continuing to aspirate/spit up formula during her lengthy night feeding is because too much formula is going in at one time. Her suggestion and the CURRENT PLAN is to feed Allyson via the g-tube for 18 hours a day giving her continuous smaller amounts over 18 hours. That was NOT the 'best' news they could have heard. Eighteen hours a day of continuous feeding pretty much ties one to the tube and the home. They are waiting for a Kangaroo PET feeding machine that comes with a charger and portable backpack and hope that insurance will cover the expense of it since the cost is around $1500. IF insurance does NOT cover it, they will still get it as one cannot do without the backpack. On 'doctor visit days' alone they are gone for 8-10 hours to L.A. so this is a necessity to say the least. So, the 'new normal' began last night feeding Allyson continuously from 8 PM until 10 PM this morning. Then, four hours 'off'...and back on the tube at 2 PM until 6PM tonight. During the feedings Allyson must be 'vented' (that is syringe burping) where the liquid with bubbles in it comes out and slowly goes back in. Sometimes it takes 5 minutes and other times 20-30 minutes depending on the amount and how thick it is. Two medications are also put into the tube during feedings to help activate the stomach to push the fluid into the intestines for proper digestion and minimize reflux - erythromicin and zantac. Allyson is also now receiving antibiotics to avoid infection around the g-tube. I think Kristin had already mentioned the albuterol treatments that Ally gets three times a day. Finally, Allyson is wearing a soft splint 4-5 hours a day (building up to 8) on her left hand to help straighten her two fused fingers so they will be ready for the surgery to separate them in the future and/or make them more flexible (less contracture) should they not be separated.

Are you tired yet????

Take a breath! There's a lot going on here, folks!!! In between/betwixt all of this, there are EARLY INTERVENTION folks, Occupational therapists, Physical therapists, CCS (Ca Children's Services) visits and perhaps the mailman even visits!!! Kristin has a file box that is already nearly filled up, and a notebook of over 200 pages that is rapidly running out of space. The insurance forms alone are enough to boggle one's mind! Kristin is the master of organization where Allyson is concerned and is keeping track of everything she needs! I have started to forget the names of some of the medical people I met just yesterday!!! Kristin keeps it all straight somehow!!!

THE BEST PART IS YET TO COME!!! Even with all I've just written about the 'new normal' Allyson gives the biggest and BEST smiles! Talk about 10,000 smiles?? Well, I believe I've received at least a HUNDRED of them this morning alone. THAT is what it is all about. She really doesn't realize all that is going on around her at this point in her life. She is smiling and beginning to make gurgle/coo sounds (coos are very difficult for babies with a cleft) when she hears the spoken word. And, you'd better believe we are talking and singing to her all the time. Morgan chimes in with the singing of her "Princess songs' - - especially the MULAN song about "the reflection of yourself"..."you are not what you seem to be"....it WATERS my eyes each time I hear her sing it! Morgan has NO IDEA what the words mean! Listen to them sometime!

I have just finished UNhooking the feeding tube as Allyson is finished with her 14 hour stint of feeding for today. I have 'clamped, drained, clamped again, UNclamped, and re-drained' and one contented little baby is swinging peacefully in her swing. I SENT her mother to the gym for some Kristin-time to workout and be FREE for awhile. As I see it that is my foremost role this week and they continue to figure out the ominous schedule of when/what/where to do/get/adjust/make everything happen routine! If it sounds like there's not a SPARE moment of the day when something is being done, you are right!!!

Suffice to say it is all being figured out in the best possible way for Allyson's continued good health and journey toward the surgeries in the near future. The date for the lip/nose surgery is not determined yet, but when the NAM-work has done its job, Allyson will have surgery immediately - she will be admitted to CHLA on an 'emergency' basis to get "IN"...that is the way the doctors will choose to handle it. Most likely, this will happen mid to late June. Maybe Morgan will get her "wish that her sister will have a nose like hers" for her birthday.

Thanks for your continued love and support. We all appreciate it!

Teetay/Terri/Pilar/Mrs. Matus siging off from Port Hueneme

Tuesday, March 29, 2005 10:30 AM CST

Good morning! Hope you all had a wonderful Easter weekend. We enjoyed having Teetay and Geep here. It was sad saying good-bye to Geep this morning. He had some special moments with both Morgan and Allyson yesterday. He and Teetay took Morgan to see the "Robots" movie in the afternoon. Later last night, Geep got to cuddle with Allyson for over an hour after her evening "meal". We also have lots of great leftovers compliments of Geep, so he will continue to be "with us" as we eat our way through this week. hee hee

Allyson is doing pretty well. We were visited by the home nurse yesterday and expressed our concerns about the frequency of Allyson spitting up while feeding. Her assessment (and our two cents) indicated that Ally's stomach is probably filling up faster than she can can keep up with the intake of formula. After contacting her pediatrician, we are now slowing down the rate at which she takes her formula. For example, she was getting 70ml in one hour at four times during the day. Now she's getting 70ml in two hours time and still four times during the day. The rate of intake is half as fast as it was before (now 35ml/hr versus 70ml/hr). Her total volume per day remains the same. What does this mean for us? Now, Ally is hooked up to the feeding machine for 17 hours a day (9 of which are overnight) versus 13 hours previously (9 were still overnight). Although we just changed the rate last night, it seems to be working and she is spitting up less.

We have two doctor's appointments today. First, at CHLA to see Dr. T and get Ally's new NAM with new nose stents. Dr. T took a new impression last week before we left the hospital. It's much smaller and hopefully will not cut her mouth like the previous one did. Our second appointment is with the GI Doctor that saw Ally a month ago. She called yesterday to get an update on how things were going with the g-tube and requested to see us as soon as possible. Dr. See is the most knowledgeable about g-tubes, feeding, and nutritional issues. I suspect that she may prescribe additional meds for Ally to help with the reflux that's occurring from an overly full stomach and/or revise the feeding schedule/volume. It would be great to have a little more flexibility in our day and not have to be attached to the feeding pump so often. We'll update tomorrow with new news.

I've posted new pictures of the girls on the photos page. They had quite a FUN Easter as you can see.

Have a great week! Thank you, as always, for your thoughts and prayers as we march down this road called LIFE!

Kristin

Sunday, March 27, 2005 10:14 AM CST

Here's a new picture of the four of us prior to Morgan's egg hunt in the backyard. She found the most eggs! Big surprise, right?!?!?!

Happy Easter! We're BAAAACCCKKK! Just a quick update to catch you up on our return home from the hospital and how Allyson is doing this weekend.

We arrived home around 7:30 Friday night. Ally's discharge from the hospital was delayed because she spit up several times during her 1pm feeding and the doctors wanted to observe another feeding to see how she was doing. Around 6pm, we were told that "it was up to us" to take Ally home or stay the weekend. We (the docs and Mark and I) agreed that Ally was fine and that her little tummy was still getting used to all the formula she was taking and that her spit ups weren't anything serious. We were told that we could reduce the volume for each feeding a little bit so that her tummy could catch up and not get overloaded. After arriving home, we gave Ally her albuterol treatment and hooked her up for her overnight feeding. She is fed for 9 hours continuously during the night (10pm to 7 am). Her daytime feedings are every three hours and each feeding lasts one hour. Allyson slept well during the night. She awoke once to be burped and then fell back asleep.

On Saturday, we got into our feeding routine and set up "stations" downstairs by the green chair and upstairs by Ally's crib. We had a pretty successful first day at home. Allyson seemed to tolerate the volume of formula we set for her and only spit up in the afternoon. She was happy and alert for much of the day. Mark and I both said she seemed much more "relaxed" than being in the hospital - we were too! Allyson had a pretty good night again - she awoke a few times, but Teetay was there to comfort her. We think her tummy was bothering her and we tried to burp her and ultimately, vented the tube. This allows the bubbles in her tummy to escape via the tube. I guess the need for "middle of the night" burping is the downside to being fed overnight. We'll adjust, I'm sure.

We've opened Easter baskets this morning! Morgan took all of her eggs and hid them all over the house for US to find. She's devoured several dozen jellybeans already and laughed at us when we tried to get her to eat breakfast! We're looking forward to spending this blessed day with Teetay and Geep, attending church services, and having an Easter egg hunt in the backyard. It's a beautifully sunny day here... and of course, we have much to be thankful for.

I haven't even had a chance to read through all the guestbook entries that have been posted over the past two weeks. We are so thankful for everyone's thoughts and prayers especially during Allyson's stay in the hospital. Once again, I am overwhelmed by the outpouring of love from so many - family, friends, acquaintances, friends of friends, etc.

God bless you all on this Easter Sunday!

With much love,
Kristin

Thursday, March 24, 2005 3:00 PM EST

Hello Family & Friends!

No news is good news, right?!? Well, the past couple days Kristin, Mark and Ally have been forging ahead trying to figure out all the new feeding formulas, patterns, ounces, devices, and adjusting to the latest and newest way of life. Allyson has been a little fussy since surgery, perhaps some discomfort or adjusting herself to her new feeding regime. Also, Kristin and Mark have been LEARNING ton about this g-tube device and how it all works. The good news is (cross your fingers!) is that they MIGHT be able to come home FRIDAY!! That will make this blessed week and GOOD FRIDAY especially great for the Kelso family.

I have talked with ALL my people today and spirits remain high (we strive not to really know otherwise!)... Teetay and Morgan were up early (duh) and Teetay (as stated in the guest book) had a blast at Morgan's Easter egg hunt at school yesterday that she chaperoned. Today when they go to CHLA to see Mommy, Daddy & Allyson, there is a Spring Party at the hospital that Morgan can take part in - and the playground! Morgan chatted up a storm with me telling me about her M&M's she had and asked where Uncle Tommy is and mostly, "where's Nala???" (our dog she adores!) Morgan is a precious soul with a dear tender heart - and she's also full of fun and silliness! She is excited about her Geep coming today.... I spoke with Dad/Geep from San Francisco layover and he was anticipating seeing everyone! Of course he had to laugh at his youngest kid (ME :) who had been trying to track him down this week to find out where my baptism certificate was, the name of a good electrician and what kind of gas grill to buy. It's these funny (and trivial - well, except the baptismal cert!) pieces of information and conversations we exchange in the midst of all that's going on that keep us sane. So as he boarded the plane to LAX, Dad told was able to pull up the contractor's number, give me details about gas grills and tell me how to find a 30-year old baptism certificate at MacDill AFB in Tampa FL!!!

Several years ago I had a boyfriend who used to joke about how things would get so serious and "HEAVY"... just so gosh-darn HEAVY... weighted down and HEAVY. It's that laughter and "normal" moments that keep us light on our feet when we refuse to get down in what could be seen as HEAVY times... It's the phone calls Kristin received from Beth and Aimee (her best friends since high school) yesterday that puts the lift in her voice and keeps her plugging along... It's the random entries from old friends like Alex Hurley who Kristin who had not heard from in years that gives them strength... It's Holly taking time (and pesos!) from her family vacation in Mexico to go online to check in on Ally that brings tears of joy... It's the undertanding from Cat and Crystal who truly "get it" and KNOW... It's Teetay's goofiness and missing Maria/Grandma Kelso/Lydia and "their work and jobs" they did together (someday they have to tell us about getting locked in the stairs?!?) that makes us see how dear blended families can be and how we get through these roller coaster times together. It's every one of you - family, friends, students, strangers, co-workers - who I could pick out that make a difference... So if you ever wondered if the slightest things you say, do, send, think, or write in the guest book or email to us privately HELP at all -- they do!! We might not recall the exact words you said or what you sent but we always know how it made us FEEL. If you are reading this and thinking of us, you have touched our lives and we THANK YOU. We thank you and we thank God for the gift of Allyson every single day and all that she has taught us in these few months.

As for my family in California, now that Geep has safely arrived to be with Teetay, Kristin, Mark, Morgan, and Allyson (and they anticipate his weekend BBQ and Easter supper!) I am thinking of you all -- Tom and I so wish we could be with you this holiday weekend. We think of you and the Kelsos in NC and VA as despite the miles, we are with you in spirit! And I promise to be back out to see you and help very soon, and I know you are looking forward to Grandma and Grandpa returning in April!

As I close, several of Kristin's friends along with my cousin Jackie in TX emailed me the other day to thank me for keeping the journal updated and everyone informed. Although you're very welcome :) , when it seems to matter greatly and helps in such a simple way, there's no need to thank me really...What else am I to do? I have had this quote in my Daytimer for months and will share it with you as I sign off:

"No matter what you've done for yourself or for humanity, if you can't look back on having given love and attention to your own family, what have you really accomplished?"
(~L.Iacocca)

Have a very blessed Easter with the ones you love!

-Ashli


Tuesday, March 22, 2005 2:45 PM EST - HAPPY 3 MONTHS, ALLYSON!
Good Afternoon! Ok, you're due for a better update so here goes-

After talking with Kristin this morning, all is STILL great(!) with Allyson since her surgery yesterday. Or shall I say the nearly TEN pound Allyson? Yes, she has gained weight - hooray!! The G-Tube surgery was done by the PEG method (Percutaneous endoscopic gastrostomy tube) wherein a G-tube which is placed percutaneously, or "through the skin," using endoscopic guidance that allow the tube to assist in her feeding. So there’s actually no incision in Allyson as the tube is sort of "threaded" down to the tummy area where it needs to be.

Allyson became a little fussy in the night as the morphine wore off so she was later given and additional morphine dose and later some Tylenol. She slept very well once the pain-drugs kicked in... from about 10:15 PM–6:20 AM. Go Ally go! Kristin only work up in her room briefly around midnight when the very nice anesthesiologist, Dr. Romo, stopped by to check on Ally’s recovery. He was super kind and was apologetic for the delay, etc. from earlier in the day. (Ally’s 10:15 surgery actually started around 4 PM yesterday! Oh the waiting.......) All in all Kristin and Mark have been happy with the care and warmth of all the docs at CHLA.

One "little" side effect of the surgery and from when Ally was incubated (breathing tube inserted) it irritated her premaxilla (the little part of her mouth/jaw area) that was sore from earlier with the NAM device. She had some blood in her mouth from the previous cut/sores in her mouth and it because all irritated and scabbed because of the breathing tube but being the trooper she is, Allyson is toughing it out and she’s ok! Because everything else looks GOOD, the docs hope to give Ally her first G-tube feeing tonight. She is still on the IV from surgery of course...

The last thing they "need to do" this week while at CHLA is the Nap Study. Kristin was uncertain whether this would occur in the next couple of days, or if they would come back to CHLA for it another week. After Kristin & Mark "pass the test" (I mean that sort of literally!) for how-to-feed-Ally with the G-tube, they should go home in a couple of days. Teetay called earlier and had taken Morgan to school (happy as can be, that big sis!) and Teetay was en route to CHLA to visit. A few of you have asked how MORGAN is doing and she is quite the little lady! "Mommy & Daddy will stay with Allyson (or “Oweeson”) and Teetay and Grandma and Morgan will go home and play!" Morgan is wise beyond her years and doesn’t seem to question much and goes with the flow. She was a trooper being at the hospital with everyone ALL DAY LONG yesterday! As you can imagine though, Children’s Hospital has quite the play area and Morgan is never at a loss for entertaining herself! Kristin and Mark are doing well also and now starting to embrace the days when they drove back and forth to Los Angeles EVERY WEEK as opposed to hunkering down there for 8 days now........ Cafeteria food... Eight days... yummy... Actually, they have been able to order out a couple times and over the weekend they even got a “pass” to leave and go OUTSIDE and stroll with Allyson for a while. Ah, the "fresh" air of LA was actually NICE for them! :)

I have read the guest book entries to Kristin and she loves them… Keep them coming! Thank you x 1000 for all your words and thoughts and prayers!

-Aunt Ashli


Tuesday, March 22, 2005 9:15 AM ET

Good Morning, Family & Friends! Just a little teaser note here to say I will post an update with more details later when I have them... remember, it's only 6 AM on the west coast and I at least want to give Kristin time to shower!! :) As Geep/Dad/Jerry said in the Guest Book, Ally's surgery went WELL and she was recovering after the 1 hour 30 minute suregry just FINE!! YEAH!! Kristin and Mark had tears of joy (along with Grandmas, Terri and Lydia) when the doctor gave them the news that "Allyson is doing fine." And as Kristin said, "well, there's ONE down!" I am sure Cat and Crystal can appreciate her sentiments :)

I'll give the full medical update later... They will be at CHLA a couple more days. Teetay returned home with Grandma Kelso and Morgan last evening and Morg was so excited to have BOTH her special grandmothers there. Grandma Kelso returns to NC today after being such a special playmate and care-taker of precious Morgan this past week. She and Grandpa Kelso will return for a longer visit in mid-April - YEAH! Teetay will stay in CA for nearly two weeks while Geep enjoys a long Easter weekend out with the Kelso gang and his special girls. Geep is looking forward to cooking those pancakes for Morgan and grilling up a storm for the bigger eaters in the crowd ;)

Today we will also keep our Uncle Loren in our thoughts and prayers as he goes in for his VERY lengthy back surgery. We love you, "Uncle Poppy"!

Have a wonderful day wherever you are and I'll share the details and update with you later!

Love,
Aunt Ashli

Monday, March 21, 2005 4:20 PM EST

Good Afternoon - A quick note here to tell you there's NOTHING to report... except for a lot of waiting!!! Teetay called and Allyson is in the surgical waiting area for her "turn" with the docs but things are backed up. Oh yes! Teetay arrived late last night in time for her sleep over in Ally's room while Kristin and Mark stayed at the hotel nearby. She said Ally had a great night despite beeing off "food" for hours (due to surgery and needing an empty belly). Lydia/Grandma Kelso arrived with Morgan at the hospital this morning so the day has been spent "hanging out" and WAITING.... Thanks for your thoughts and messages! I will read them to Kristin/Mark later and I'll post an update as soon as there is one!

-Aunt Ashli :)

Monday, March 21, 2005 10:55 AM EST
Greetings and Happy Spring!

Guess what - NEW PICTURES on the photos page!! I didn't dare remove this precious sister photo from the home page so to check out Ally in her new "crib" at CHLA, go to the photos page... Mark was able to send me some photos of Ally and her feeding tube when he was home briefly this weekend.

As for the UPDATE... Nothing too new to report on any tests in the last couple of days. There have been xrays and other things but either nothing to report and all is "normal" or they were just additional details to add to Ally's intense study. Kristin said there has been a ton of waiting around for docs and consultations, and yesterday was a day of "nothing" really. TODAY AT 10 AM PT... Allyson will her her surgery (approx 1-1.5 hrs) for her G-Tube to be inserted.

As mentioned before, they will try to do this by laparoscopic and I will be sure to post the details once I hear she's out of surgery. As a reminder, because Ally is not able to get enough nutrition by mouth she needs this gastrostomy tube. Basically the way the surgeon gets to the stomach and esophagus is by a laparoscopic fundoplication which means that the surgeon will use several small incisions, and special instruments, with the aid of a videoscope and TV monitors to perform the fundoplication. The recovery time from a laparoscopic fundoplication is shorter than the open procedure. There is also less post-operative pain and a less visible scar. Nutrition that the baby is not able to take by mouth can be given by the G tube. The G tube will need to be in place until the baby is able to get enough nutrition via its mouth.

Say prayers and special thoughts for Ally today and I'll update the journal later!

-Ashli



Friday, March 18, 2005 9:45 AM EST
The balloons on the site today are in early celebration of Allyson's THREE month mark this Tuesday! :)

A brief update... Just talked to Kristin and she is heading to the hospital now - 6:30 AM PT - yes, heading to the hospital because she slept in a real bed at the hotel and got some "real" sleep last night! YEAH! Mark stayed in the room with Ally and at the end of the night, the newest roommate (who seemed to cry constantly), was transferred out of the room so we assume Mark had a little sleep as well. Ally slept well in the night.

Just before 10 PM last night, Kristin was about to leave and it was after Ally's 9 PM feeding (via tube) that she began to spit up, then a full on vomit, quite a bit. She is OK but the force of it all popped the feeding tube out so it was quite an event. The nurse said it was up to them to put the tube back in or on IV overnight since she needs to be "empty" and without food/liquids 4 hours prior to her upper GI tests this morning. Since they didn't want her to be ill in the night and not sure what caused the vomiting, they chose to have the IV put back in over night. This morning she will have her GI tests.

As for the "swallow study" yesterday, nothing really to report as the study was ended abruptly when Ally was feeding and began to aspirate - we already knew this as did the doctors but chose to end it since she was aspirating. Kristin and Mark were a little frustrated since it really didn't seem to be a STUDY after all when Ally was doing exactly what they already knew.... ANYWAY, it was the least "friendly" encounter with doctors at CHLA thus far as everyone has been so kind and warm and these docs were quite clinical. Not sure what is to follow and if there will be another "study" later on.

That's all for now... I'll update you later when I know more!

Love,
Ashli


Thursday, March 17th, 2005 1:20 PM EST
Quick update from Ashli...

I just spoke with Kristin for a while and she is doing well and hanging in there. Have a few updates/additional information...

They met with the head cardiologist this morning, Dr. Jackie, who is nice and very personable and tends to "hang around" and not seemed rushed when speaking with them - Kristin likes her lots... She eased their minds again re: the hole in Ally's heart and mentioned that although the size of the hole is significant (measured in millimeters) that it's not "severe" amongst the hear issues one could have. She basically said that since the hole is in the upper chamber of the heart (there are two chambers) it is less significant than if it were in the lower chamber. Having a hole in the heart automatically means you have a "heart murmur". A heart murmur is a swishing or a whistling sound that the doctor hears when she listens Ally's heart with a stethoscope and the whistling sound is caused but the HOLE being there. Murmurs are rated on a scale of 1-4, 4 being the most severe, and when listening to Ally's heart, she said it would be a ½... yes, a HALF. So it's not a "big deal" at all right now and the murmur is pretty non-existent. Of course this all is very ironic and brings tears to my eyes recalling all the times "Dr. Morgan" comes up to you with her play stethoscope and say, "I gonna checka your heart!" :) Dr. Jackie did add that the hole could grow in proportion to Ally's heart but all that remains to be seen.

As an aside... the hole and other issues they are finding are NIT related to EEC at all but the docs have all said it is very common when there are malformations on the external part of the infant, there are commonly internal "malformations" as well - like the hole. I reminded Kristin that she said this early, right after Ally's birth... she had said, "I just wonder what else is wrong we don't know about". Mothers know... of course she hadn't recalled saying it but I do!

Allyson will start the Albuterol treatments soon with the Nebulizer and will do those three times a day, possibly forever. That seems to be the immediate "diagnosis" but as we know, things can change!

With regard to the G-tube insertion surgery... This will be done Friday or Monday - most likely MONDAY. It is ideally done by laparoscopic surgery and they think they can do this even with the cleft but there's a chance they'll have to go in and do the tummy incision. Still TBD... They will be in the hospital 2 days following surgery so they are there until mid next week for sure.

Ally's feeding tube (mouth - like she had in the NICU) is in and she is doing great! Kristin thinks she is exhausted from all her tests but also resting and sleeping soundly with her new full belly!! She has been fed 4 times with the tube in already and no issues, sickness and her tummy is full - hooray! She sucks on the pacifier happily as the tube feeds her. Go Ally go!

Later today she will have her swallow study and nap, as in sleepy nap-time :) study.... They will obviously have to stop feeding her for about 4 hours prior to the swallow study.

Morgan was in the bathroom this morning where Lydia/Grandma Kelso heard her milling around... Morgan was ecstatic and screamed "GRANDMA!!" with a smile when Lydia peaked in on her. Morgan was happy to hear she didn't have to go to school today and Grandma would be taking her to the zoo. Hooray for that - I know we have all be thinking of Morgy-lu in this too and happy she can have her happy Grandma time and day at the zoo - one of her favorite things! And it will be even double the fun when Teetay arrives!! Heaven for Morgan, I know :)

Kristin did say that at times it's funny - like something out if a movie or "ER" - like this morning a whole entourage of doctors holding their pads and in their lab coats came marching in... It was the G-Tube team getting their debrief, etc... she had to chuckle after first thinking to herself, "oh God, what's wrong?!?" :)

Lastly, Dr T came last night to see them (can't recall if I posted this note yet) and he was going to discuss moving up Ally's cleft surgery with Dr. Reinisch. Usually this would be done at a year or so but they may try to do it at 8 months or so... the "or so" in Kristin's mind means after August 20th! :) No need to have surgery then fly 3000 miles away from dear CHLA and all that they know!

That's all for now... I'll post an update with the swallow and nap results later if/when I have one. That sounds funny. Swallow and nap. Speaking of, I need to head off for some swallowing of lunch and a nap myself. Something tells me the latter of those two is not an option here at my desk :)

Does anyone know why these turtles look so angry? I was simply going for something GREEN and this is all I had to choose from. Cheer up, little turtles!! Actually, they look more like they're heading for the ring with Holyfield and "Mama said Knock you out" playing in the background... Kind of how I think of little Ally right now forging ahead in her true FIGHTER mode! ;) Ok, I digressed big time. Sorry.

Hope you're having a good St. Patty's!!
Love,
Ashli


Thursday, March 17th, 2005 12:05 AM EST
Good evening Family and Friends!

Aunt Ashli here with quite the update so hang on to your seats because it has been a wild ride today with a flurry of information about precious Allyson... And I can’t take all the credit for this entry as I am using an email from Teetay/Mom to really convey all the right information and big words :) SO here goes…

After a day of several tests, waiting for doctors and becoming more knowledgeable about several medical terms and conditions. From Allyson’s EKG yesterday, we have learned that Allyson has an atrial septal defect (fairly large) which means there is a hole in the wall of her heart between the left and right ventricles. This allows blood to flow freely back and forth between the two sides. This presents NO problem at this time. Down the road, it will probably present a problem. Not sure of the cause but it’s just another part of Allyson that didn't form properly during incubation/pregnancy. The pediatric cardiologist, DR. FAGAN, Children's Hospital, Los Angeles, did not say 'when' this type of malformation occurs. (With EEC the spontaneous mutation occurred in the first two weeks - chromosome 7) Dr. Fagan is a 'fellow' - Kristin does not know his first name. He did indicate that the hole could close up over time but since it hadn’t in these three months, it probably will not close up as some do...it is of a size that it probably won't. The hole will grow proportionately to the heart size growth and Allyson gets bigger.

The best possible proposed treatment' will be (if it is possible) catheterization when Allyson is between 3 and 5 years old. The catherization is a NON surgical procedure and the best one. However, if the hole is of a certain size at that time where this procedure might not work, then Allyson will have surgery (incision) and the hole will be closed traditionally. From this point forward, every six months Allyson will have a echocardiogram (EKG). For example, with dental treatments in the future - Allyson will have to always take antibiotics prior to dental treatment due to bacteria and possible connections between that and the open hole, and/or the closure at a later date. Obviously, if this is not repaired Allyson will be at great risk as she ages for heart disease and/or stroke. (endocardosis?? sorry about that word...not sure what K. actually said)… We all shared about 10 phone calls with Kristin/Mark today and trying to keep all the big words and scoop straight!

Allyson is not at risk at this time. This condition is not associated with EEC and it could have occurred anyway, but obviously, Dr. Lilly, the pediatrician thought it was important to check this vital organ as part of her total workup. Thank you, Dr. Lilly...if we did not know, there would be greater risk and that would manifest itself in a heart event.

Now, for the scinti scan which was completed in nuclear medicine this morning.... Allyson took in five minutes (that was the time limit) 45ml of formula with a 'trace' of NON harmful radioactive material in it. The scan is not an x-ray, but more like an MRI and the radioactive material is so the doctors can see inside her. The scan picks up material in the stomach. Bottom line: Allyson has NO ACID REFLUX - that is ruled OUT (hooray!). The milk emptied into the stomach and then the bowels just as it is supposed to do. (They were not looking in her lungs at the same time…just the stomach on this test)

Later today she had a Chest x-ray. There appears to be fluid "specs" in the lungs but not at any alarming rate...there is NO INFECTION, NO LUNG DISEASE, and NO presence of anything wrong. There are some "speckles" and this could be 'normal' but at least now there is a BASE LINE LUNG XRAY for comparative purposes. Because of the specks, Ally will begin breathing treatments using a machine much like asthma patients using Albuterol 3X a day. Kristin does not know how long this will last - maybe a long time or until another x-ray shows 'clear' if the speckles are related to fluid and not normal.

At 3PM PT Allyson was to be part of a NAP study. However, at 8:30 PM EST I spoke with Kristin and they were still WAITING… much of how the days go! (Teetay had asked what "NAP" meant when they spoke earlier… Kristin said laughingly, "SLEEP, Mom, SLEEP!" I thought it was another abbreviation for something else! We’re all trying to keep up here… And by the way, what IS “sleep”?! ha ha) The team will observe Ally sleeping, looking for obstructions in her airways while sleeping, carbon dioxide emitting, and an in depth study of her sleep habits...with monitors etc.

TOMORROW MORNING (17th)...Is the Barium consumption for the SWALLOW STUDY. That will determine her ability to swallow and where it goes etc. This is the big one we have been waiting for but Kristin/Mark already know they are putting in an oral feeding tube until the testing is over.

Kristin & Mark also already know that Allyson will have a G-tube (gastric feeding tube) put in before they leave the hospital. Nutrition is of the utmost urgency here. Little Allyson needs to become "Chubby Allyson"...the feeding tube could be in for a long time. SO there will be a whole feeding tube and apparatus lesson to be learned in the coming days for Kristin and Mark… and Allyson too!

Teetay/Mom spoke to a friend at school today (Sue Bell) and her granddaughter was born prematurely (4 months) and she had a feeding tube for a year. She's completely fine now. She had none of Allyson's other issues, but she did have a feeding tube.

So, gang, that's about it...that's what I know now.

Knowledge is a powerful thing, and we all feel much better tonight without all the UNknowns. We can deal practically with what we know. However, we can also make ourselves half-crazy Googling all these conditions and reading the vast amounts of research. Since we all scared ourselves to pieces last night after hearing of the EKG results, I think I will stay away from Google this week! Hee hee.

So you’re wondering again and always ask… How is Kristin? Mark? Morgan? Tough as nails. Morgan is probably excited to have Grandma Kelso arriving this evening to play and care for her. Teetay arrives on Sunday. Mark had run to Target to buy some essentials and a real pillow (!) for Kristin to sleep on in the room. Mark continues to hold down the fort at the Super 8 on Sunset Blvd. while my best friend Michelle (in LA) is on stand-by for airport pick-ups and other needs. Of course Mark and Kristin have been concerned but are feeling much better today having some answers and real explanations. As for us, Mom, Dad and I always feel better after talking to Kristin and having REAL words and doctor explanations...knowledge is power and we deal best with the things we know…and move forward.

For Teetay, school was hard today. She cried and hugged friends...her first time to cave. It just took those words "hole in the heart" to do that. She had wondered what would do that to her. Now we know. As for me, I dialed direct to Ally’s room from 12:30 ET – 6 PM ET after a couple of conversations with Kristin early this morning… and she had told me to call after the cardiologist had stopped in this morning to read the EKG. Not reaching them for hours make me sick but thankful I am for co-workers like Jan who knows of Ally and the situation and cares deeply. There’s always someone around the corner who allows us to “break” every once in a while – a hard thing for us Matus chicks to do! (wink.)

As Mom said earlier, we must ask God about this one day... WHY? Surely, there is a reason, and I hope we are living proof of that reason, but still we wonder and we question. It’s hard not to question but I have held close the words that Cat Potter, our new friend and mother of Darren, an EEC child, who said early on something to the effect that it is a blessing to be chosen by God to be 1 in 15,000 mothers to care for a special child with many needs – EEC related and beyond. I just know that I couldn’t be more proud of Kristin and Mark and for the parents they are and were chosen to be. I know they, along with Allyson (and Morgy-lu too!) are in your thoughts and prayers. We are reading the Guest Book entries to them so keep them coming as they are without computer access. Additionally, they will probably be at CHLA until this coming Monday. All to be determined…

Happy St. Patty’s day and I wish you all your very own pot ‘o gold at the end of your day’s rainbow… And to paraphrase the words of our new favorite family song by Tim McGraw, find time in your day to love deeper, and speak sweeter and give the forgiveness you’ve been denying.

Today is a gift. Make it a good one.

Love and thanks to you all!
-Ashli


Wednesday, March 16th, 2005 11:10 AM EST
Greetings again from Aunt Ashli with a quick update...

Good morning! Nothing really "new" to report other than a good night of sleep for Allyson after a terrible day of feeding! It was quite a surprise since Ally had her first OT observation for feeding and it was a complete bust. She had no interest in food whatsoever... They took the NAM out to find a bit of blood in her mouth and Dr. T immediately came to take a look and make some adjustments. This morning Ally will have the scan (with the "scinci" - wrong spelling - word/acronym) that I cannot say or find out how to spell! Maybe my nurse cousin, Leslie, will assist?! :) Additionally they will look at the EKG readings from yesterday's tests. the GREAT NEWS is that Lydia/Grandma Kelso arrives at LAX today! As Mark wished to stay at/near the hospital, Grandma will arrive to spend the rest of the week with Morgan. Teetay arrives Sunday so there will be grandmother love abound for several days to come - HOORAY! And hooray that Kristin and Mark will have this IN PERSON mother love and support... Ain't moms the best? Lucky and blessed we are. So I sign off with a motherly-friend quote since at least this is one topic I KNOW - the love of my own mother, the love I see in Kristin as a mother, and the laughter and silliness we can still find through the tears. If you don't know what I mean, re-read Mom/Teetay's guest book entry about the silly insanity of the PAPERS she carried in the home last night as I was watching the "terrorists" on '24' and reviewing my printed out research about Ally-EEC-feedings-scans-barium, etc, etc! So here it goes...

A mother is the truest friend we have, when trials heavy and sudden, fall upon us; when adversity takes the place of prosperity; when friends who rejoice with us in our sunshine desert us; when trouble thickens around us, still will she cling to us, and endeavor by her kind precepts and counsels to dissipate the clouds of darkness, and cause peace to return to our hearts.
(~Washington Irving)

Have a great day wherever you are and I'll write more later!
-Ashli


Tuesday, March 15, 2005 2:33 PM EST
From Aunt Ashli...
DAY TWO - CHLA week of tests!

I talked to Kristin earlier and there's only a brief update before the docs started seeing Ally today. They put an IV in Ally at 4 AM today so Kristin has not been able to feed her - she seemed sad over that but to do the barium, etc tests she needs an empty tummy... Of course this is frustrating since they stopped feeding her "for real" when the main reason she is there this week is to get the FOOD part figured out! Oh well...

UPDATE just in the last few minutes! Ok, because I was interrupted and didn't finish the journal a few minutes ago, there's more - K just called and the reason for the IV is the scan they will run. It might not be until tomorrow now so they might take the IV out so she can feed her normally... just depends... quite the waiting game! The scan has a name that we can "say" but I am trying to research how it's spelled/what it is so we can learn more. Ally had an EKG this morning and that's all thus far. This is part of the routine tests to check her all out, not that they thought anything was "wrong".

Logistically speaking, Mark is taking Morgan to school today then heading to LA. Suzanna will stay with Morgan for tonight at their house and take her to school tomorrow. Not sure about the rest of the week... they are playing it by ear but Suzanna is on call - God bless her! K & M got a hotel room near CHLA for one of them to stay there tonight, the other will sleep in the pull out chair in Ally's room.

That's all I know... We'll be calling K later to check in as she cannot call out of Ally's room long distance and she cannot use her cell phone in the room. Ally is sharing a room with another infant and a little boy. Kristin got little sleep between the two awake babies in the room (who couldn't be asleep at the same time, of course ;)

Keep the guest book entries coming because I am reading them to Kristin & Mark!! Thanks, always, from ALL of us for your support and love~

-Ashli



Monday, March 14, 2005 4:45 PM EST
DAY ONE - CHLA week of tests

Greetings from Aunt Ashli with an Allyson update...

I spoke with Kristin a while ago and she and Allyson are settling into CHLA for the next few days. As suspected, the nurse/case manager and pediatrician want to admit Ally for tests and observations. This was a possibility all along heading in to the appointment today so "it's ok" and Kristin sounds pretty good about everything.

The team will do a full feeding assessment in which they need to observe her eating habits, "where the food goes", etc. over the course of several days. It is a moderate Barium study conducted jointly by a radiologist and occupational therapist. If you're not familiar with Barium and how it works, I have undergone such tests myself (yuck! so glad Al doesn't really "taste" yet!!) and it basically will be a Barium mixture she consumes then they can do x-rays and track the flow of food/formulas and test various mixtures to see where it goes and what works best for Ally. They will also monitor her oxygen levels while feeding, while awake and at rest while she is being observed over the next few days. As a side note, one main reason for admitting Ally is so that she can be seen IN the hospital "immediately" by the Occupational Therapist and it speeds things up - Otherwise, it would be 3-6 weeks before an OT could assess the feedings and the OT is the primary person to monitor and make the changes in her diet and feeding methods. Obviously things like feedings and oxygen levels need to be tracked over a period of time so they expect to be "wrapped up" by the end of the week.

For the NAM news, Ally saw Dr. T and the NAM has been remolded and fixed so it sits properly in her mouth. It is no longer causing her any discomfort and it is back in. That's great news!

The logistics for the week still need to be hammered out a bit but for now, Kristin is staying in Ally's room tonight at CHLA. Mark is home with Morgan and will probably come to CHLA tomorrow. Morgan will join them in a hotel or Morgan will possibly have some fun over-night time with her special babysitter (and God-send!), Susanna. Thankfully, my dear friend Michelle Beaudry, who Kristin has also known since we were 14(!) lives just blocks from CHLA and is planning to visit with Kristin this week or get her out for lunch, coffee, whatever! The CHLA cafeteria is, well, lovely... But, anything like that will get old after a week ;)

Kristin is FINE and keeping her tough-as-nails head about her. She and Mark are to be admired and since I rarely get to write on the front page of the web site, I have to give them major props for who they are and how strong, determined and patient they are with the roller coaster ride they are on. I will miss not having them all visit us this coming week however Allyson's health takes priority over ALL. They will be in our thoughts as the George and Matus family and friends celebrate together this weekend. Another thing to be THANKFUL for... guess whose spring break starts this coming weekend?!?! TEETAY!!! So as scheduling luck would have it, Teetay/Mom/Terri will head to CA this Sunday to spend her week off with her three most precious girls. (Ok, at least 3 of the 4 most precious... ;)

Thank you all for your continued thoughts and prayers... we feel the love and I will be updating the journal this week as I hear from Kristin and Mark. And keep the GUEST BOOK entries coming as I will be reading them to Kristin and she loves to hear from you!! She'll need it this week, too!

Happy Monday and have a great week, family and friends!

Ashli


Monday, March 14, 2005 0:28 AM CST

Hello! As most of you read this Monday morning, Allyson and I will be on our way to Children's Hospital for an eventful day. After much frustration and confusion over seeing a multitude of different doctors at different locations regarding Allyson's feeding and weight-gaining issues, we have decided to see all the necessary doctors, therapists, nutritionists, etc. at Children's Hospital. We probably should have pursued this weeks ago, but we didn't really know how to go about it when you have primary care physicians, referrals, authorizations, etc. When we first brought up our feeding concerns to the orthodontist and nurse mananger, they sort of blew us off. Now that it's three or four weeks later and things aren't better, they're listening.

Allyson will see a pediatrician and pulmonary specialist at CHLA this morning. Most likely, she will be admitted to the hospital for a series of tests including a swallow study, pulse/ox saturation test, and who knows what else. I am packing a bag and planning to stay the night. Mark will stay here with Morgan unless it's urgent that he comes to LA on Monday. If Allyson stays in the hospital more than one night, Mark will join us on Tuesday and Morgan's babysitter will stay with her. We're hoping to have the tests done and get "this" resolved once and for all so that we can continue with our plans to travel to Virginia on Wednesday. We'll know more on Monday... and I'll have Ashli update the journal as soon as we know anything since I will be computer-less for a day or so.

To add insult to injury, we had to remove the NAM device and nose stents on Friday afternoon. Allyson got progressively fussy with each feeding on Friday until she was screaming when the bottle got close to her mouth. We took the device out and saw that it had rubbed a sore in her right nostril as well as on her premaxilla (the same place she had a sore the previous week) and she was bleeding in a couple of places. We contacted the orthodontist who supported our decision to leave it out. Before we see the other doctors on Monday, we will see Dr. T and have an impression made so he can create a new NAM for Allyson. Whether she continues to wear the NAM after completing her feeding and breathing tests remains to be seen.

So that's where we are as of 11pm Sunday night. We actually had a pretty good weekend. I took the girls to have their picture taken on Saturday - that's the finished product on the home page. Mark stayed home Saturday night and I played Bunco with some squadron wives. My first night out alone was such a treat! Morgan and I had some time together today and went grocery shopping and to our monthly wives' meeting. In between all these activities, Morgan found time to be Cinderella (view photos page), have several tea parties, bake cookies with me, dye Easter eggs with Daddy, and Allyson dazzled us with a few more smiles.

Hope you all had a good weekend! Keep us in your thoughts Monday as we hopefully find some answers to Ally's feeding troubles!

Kristin

Thursday, March 10, 2005 9:57 PM CST

What a day! What a week! Let me get right to updating this journal...

The picture above shows Allyson with the nose stents attached to her NAM device. The NAM will continue to move her premaxilla back into her mouth, the nose stents will push her nose upwards and stretch her columella and the center piece of tape helps to bring her lip down. We were expecting to get impressions made today for a new NAM since the original was no longer fitting properly. Instead, Dr. T. made adjustments to the existing NAM and added the nose stents. Once again, it was like watching a skilled sculptor/welder at work. Quite the process and the expression of modern medicine at its best. During our visit, I pulled out a picture of Allyson that was taken at one-day old while she was in the NICU. I was showing it to a couple of dentists who had not seen Ally at the beginning of this process. They were amazed at the transformation already... and to think we still have 8-12 weeks to go... I can only imagine how pleased we'll be in the end. Mark also looked at the one-day old picture of Allyson. Although I thought he had seen it, he was quite overwhelmed by it, as if he was seeing her for the first time. Later, when we were driving home, he told me that he couldn't get the image of the picture out of his head and was amazed at how much she has changed in eleven weeks. As you might be aware, it's very hard for us to see the changes that the NAM is making since we see Ally everyday... but to everyone visiting the website and to the doctors that see her once a week, the transformation is much more obvious. Allyson's feeding does not seem to be affected by having the NAM and nose stents back in. We successfully used the Dr. Brown's bottle (this is the bottle we've been using for the past week) during her last feeding and she took over two ounces.

Our OT appointment yesterday evening was very insightful. Allyson's development is pretty close to being "on target". Her most deficient area is "language development". At 8 weeks old, a baby should begin to make cooing sounds and start "talking" when spoken to or when excited by something. Allyson makes a few guttural sounds, but no "coos". Of course, this has a LOT to do with her cleft palate and delays in speech are to be expected. We'll receive a full report from the occupational therapist in about a week.

The best advice we received from the OT and nurse was to "push" the issue to get a team to evaluate Allyson in regard to her feeding/breathing/nutrition issues. It makes sense to have a group of doctors at ONE place (i.e. Children's Hospital) who can communicate about her case. Right now we're seeing a lot of different doctors, but none of them are talking to one another. So we brought this up with the Nurse Manager at CHLA today, and she's setting up an appointment with a pediatrician at CHLA for Monday. Sometime soon, Allyson will have a comprehensive feeding assessment and swallow study and will be seen by a GI doc at CHLA. This is something we probably should have done a couple of weeks ago, but being "new" to all this, we thought we were doing the "right" thing. Hopefully, we'll get this "new" ball rolling before we travel to Virginia on Wednesday and then continue at the end of the month.

Early Intervention services will start on Tuesday. I'm not sure what that will entail, but we'll probably have some exercises to do with Allyson while we're on vacation.

Morgan spent the evening with her babysitter, Susanna. They had dinner at one of Susanna's friends' house and she had a fun time playing with some new kid friends. Mark and I got home around 6:30 tonight and felt that the house was "too empty" without Morgan. Susanna brought her home around 8:15pm, so we're ready for bed now! Morgan seems pretty tired, so I think I'll end this and go tuck her in right now.

Good night! Thanks for keeping us in your prayers as we enter this next phase of Allyson's treatment!

Kristin

PS from Ashli -- Some of you have asked about the newborn pictures that Mark saw as mentioned above... For those of you who might want to step back 11 weeks to where Ally's journey began to check out her very NEWBORN "before" pictures taken 12/22/04
CLICK HERE!

Or, COPY & PASTE this link into your web browser:
http://www.ofoto.com/I.jsp?c=zrj2cxz.5x0i00f7&x=0&y=-vh74if

Monday, March 7, 2005 8:38 AM CST

Happy Monday morning! We're excited to have a rain-free week here and temperatures reaching into the 80s by the end of the week. Hope northern Virginia will be able to match that by the time we arrive next Wednesday.

We had a relaxing weekend. I took Morgan for her first haircut at the "beauty parlor" Saturday morning. She was hesitant at first, even though I had been talking it up all week and thought I had convinced her that she'd look like Rapunzel when we were finished. After she adjusted to the new surroundings, she did great! For anyone wondering, Morgan's hair just got a trim - nothing major! She still has her long curly hair. The stylist just evened up the ends and thinned out some of the unruly frizziness. To quote Mark, "it doesn't look any different!" Well, that was the idea!

We ended our Saturday with a family trip to the "beach park." Morgan loved playing in the sand and climbing up and down the slide. We all took turns on the seesaw (even Mommy and Daddy) and Allyson seemed to enjoy the salt air. She slept in her carrier the whole time.

The girls and I went to the Farmer's Market Sunday morning. We bought yummy avocados, asparagus, and tomatoes. Morgan enjoyed seeing the boats at the harbor and throwing things into the water. Allyson slept soundly in her stroller as Morgan and I had lunch. Both princesses fell asleep in the car and took restful afternoon naps.

We're still trying to get Allyson to eat consistently. Some feedings are great and she'll gulp down two or more ounces. Other times, we struggle to get her to take one ounce. Mark and I have experimented with different bottles, nipples (cross-cut, wide-cut, cereal cut, etc.), and formula recipes. The good news is that Allyson isn't spitting up much anymore so she must be tolerating the extra calorie formula and cereal mixture. We just need her to take MORE of it! She's also been coughing more, but this could stem from not having the NAM and therefore, more liquid is going up into her open palate. We'll keep trying!

Our doctors appointments this week include seeing the occupational therapist at our local hospital on Wednesday and of course, our Thursday trip to LA for a NAM adjustment/new NAM/nose stents. We should also begin our home visits through Early Intervention, but I'm not sure which day that will be.

Hope you all have a great week! We'll keeping posting any "new news" as it arises!

Kristin

Friday, March 4, 2005 3:55 PM CST

1:45 pm Pacific Time... GUESS WHO JUST SMILED??? CHECK OUT THE TOP PICTURE ON THE PHOTOS PAGE. OH, HAPPY DAY!

Friday, March 4, 2005 8:37 AM CST

Hello from rainy California - again! In just the first two months of this year, we've already tripled our normal annual rainfall and we're tired of it already! But enough about the weather, we have lots of updates to share...

As you can see from the picture, Allyson did NOT get her nose stents yesterday. She has a sore on her premaxilla where the NAM has been rubbing against it. We noticed it a couple of days ago when we changed her NAM and cleaned it. The sore spot bled a little bit and seemed to cause her discomfort when we tried to wipe away the mucous. When I removed the NAM yesterday at Dr. T's office, the sore (like an ulcer) bled a lot. Dr. T thought it would be best to leave the NAM out for a week and just continue to tape her lip. He wants her lip to move downward even more and her mouth needs some time to heal. Dr. T. may have to make Allyson a new NAM next week once her ulcer heals. The device isn't fitting as well anymore since so much has changed inside her mouth. So, we were a little bummed that we couldn't move forward with the process and get the nose stents. However, on the other hand, it's kind of nice to see her cute little mouth without all the "stuff" in it.

So now an update on the weight gain and feeding issues... The good news is that as of Wednesday, Ally gained 6 ounces in 8 days. Her weight is still low, but at least she's gaining some now. However, without the NAM, Allyson has to learn to take her bottle all over again! So far, she's done pretty well. She seems to cough even more than she did with the NAM, but really isn't spitting up much more. We have to do more of the work by squeezing the formula from the bottle into her mouth since her "chomp" isn't as strong without the NAM on the roof of her mouth. I think she is still having breathing issues while eating as well. The PT will visit us on Saturday and do an oxygen saturation test. I discussed the oxygen issue with Dr. Huang on Wednesday, and although he's going out of town, he has made his personal oxygen tank available to us if we need it. Oh, one last thing... Allyson also received her RSV shot yesterday - no problems there!

We also did some "networking" yesterday... or "pathfinding" as we call it on Cleft Advocate. First, while we were waiting to get the RSV shot, a mother with her two young girls walked by and saw Allyson. The mother asked, "does she have a cleft lip?" When I responded "yes", she said that she had one too. Of course, I automatically start staring at her mouth while she's speaking. The woman was beautiful and had a tiny scar between her nose and lip. She explained that she'd also had a cleft palate and that her last surgery had been done when she was in second grade. We didn't chat for long, but it was a nice "small world" encounter. Next, when we arrived a CHLA, we met up with another mother of a cleft child who lives in Thousand Oaks (about a half hour from us). I had met Peggy on-line through Cleft Advocate. Her daughter (two years old) had her cleft lip and palate repaired by Dr. Reinisch at CHLA. She happened to be in LA yesterday for a meeting, and stopped by the hospital just to meet us. Peggy walked with us to the waiting room of the orthodontist's office and we chatted until we were called to our appointment. Finally, we also ran into the couple with the two-week old boy, Aidan, whom we had met two weeks ago when he was getting his NAM device. Brian and Judith live in Long Beach, and were back at CHLA yesterday to get a "new" NAM. It seems the first one they made for Aidan didn't fit, so they were only doing the lip-taping part of the process. We all went into our appointments together - Aidan and Allyson had adjoining rooms so we continued to visit with them and share our NAM experiences while Dr. T. and Dr. Yen juggled both patients at the same time. It was really great to meet Peggy and get her advice about dealing with the doctors and the "team" at CHLA. Her daughter, Tori, didn't wear the NAM, but her insight was beneficial to all of us. Of course, talking to Brian and Judith was great since we're all doing the same thing right now - Aidan's just five weeks behind Ally in both age and the NAM process.

Anyway, it was a busy day, but we were home in time to have dinner with Morgan (and Susanna, her babysitter) and visit for a little while. We'll continue to "power feed" Allyson and hope she "gets it" even without her NAM.

Have a good day and a great weekend!

Kristin

Wednesday, March 2, 2005 8:18 AM CST

Sorry I haven't updated since the gastroenterology appointment on Monday. Don't worry... all is well. Morgan is feeling better from her stomach bug and went to preschool yesterday... Aunt Ashli has returned safely to Washington, DC... And our car has another 220 miles on it from my travels Monday and Tuesday!

The gastroenterologist wants to conduct a test on Allyson to determine if she has acid reflux or any other gastro problems. The test will involve putting a scope down the esophagus and into the stomach. Of course, this will require Allyson to be put under while she does the test. It only lasts 10-15 minutes and will show the doctor what she needs to see. We've proceeded with asking our insurance to authorize the procedure and assuming it's approved, Allyson will most likely be tested at the end of the month after we return from Virginia. Dr. See said there were varying degrees of acid reflux and Allyson's case could be mild, but in light of her other feeding issues due to her cleft lip and palate and the fact that she will be having a couple of surgeries this year, we have to make nutrition the number one priority. Normally, the doctor would treat a baby Allyson's age with medication and "wait and see" if they grew out of it by the time they were 12-18 months old. However, Allyson's case is more critical in that she HAS to gain weight NOW to prepare for surgery and she has to continue to gain weight after her surgeries when feeding will be difficult initially. Other than that, Dr. See encouraged using the formula "recipe" suggested by the nutritionist and told us how to make it a little more concentrated. Allyson needs to take a minimum of 13 oz per day for hydration and weight maintenance and 16 oz per day to gain weight. So far, she's taken 13-15 ounces each day over the past two days. We're still feeding her every 2-2 1/2 hours for a duration of 30 minutes each feeding.

We'll see Dr. Huang this afternoon for Ally's "weigh in." Based on our scale, I think she's gained a few ounces since last Tuesday, so we'll see what his scale has to say. He also gave us the name of a doctor who can provide the RSV shot for Allyson. When he called yesterday, he said that he had instructed this doctor to bill him for the shot (a you recall, this is the $1000 shot normally given only to premature babies who are at high risk for contracting RSV). Dr. Huang feels that Allyson will benefit from getting the shot since she is in danger or contracting aspiration pneumonia due to her eating/choking/breathing issues. We will take Allyson to the "shot doctor" tomorrow morning before heading to LA for her NAM adjustments. Dr. T. will be adding nose stents to the device in order to stretch the skin between her noes and lip. Our appointment should take 2-3 hours, so we'll update with pictures and another journal on Friday.

We had a great visit with Aunt Ashli and were sad to see her leave yesterday. I'm glad we have our trip to Virginia to look forward to in just two weeks. Mark will be joining us on our travels - he's in for a treat as he flies with Morgan for the first time! I'm glad he'll be there to help with Allyson too. We're really excited to be "in town" for Ashli and Tom's celebration weekend and to meet Tom's family. Morgan can't wait to bond with Jessica, her flower girl partner. Should be tons of fun!

Have a good Wednesday... and yes, Anna Rainwater, it's sunny here in CA, but more rain is expected on Friday. YUCK!

Kristin

Monday, February 28, 2005 8:47 AM CST

Good morning, everyone! We've been enjoying having Ashli here and have filled our days with lots of wedding stuff over the weekend. There's lots to update, so I'll get right to it...

On Friday, Ash, Ally, and I traveled to Pasadena so that I could see her in her wedding dress. As the big sister and matron of honor, I just couldn't WAIT until August to see Ashli as a bride. The dress is gorgeous and she's even more gorgeous in it! I'm sure my gushing was sufficient, but Ashli also got rave reviews from the DESIGNER of the dress who was at the bridal shop for his trunk show. As corny as it sounds, we were both a little giddy from meeting this designer and his comments about Ashli in his dress. We continued our pre-wedding duties on Saturday with a trip to another bridal shop so that I could try on bridesmaids dresses. After another successful outing with both Morgan and Allyson (although I didn't have a NYC designer gushing over me), we "celebrated" with a trip to Chuck E. Cheese (guess who requested that?? I'll give you a hint... it wasn't Allyson!). We enjoyed pizza and salad. Morgan played games and Allyson took her bottle. Both girls feel asleep on the way home and all was well.

Allyson is doing a little better with her feedings. We had a physical therapist (who also works with a NICU nutrionist) visit Saturday morning. She gave us some new advice on helping Allyson eat better and gain weight. We are now using a 25-calorie formula "recipe" (the 4th different formula we've used this week) that combines Enfamil 22-cal with rice cereal. The PT's assessment was that Allyson's feeding issues are directly related to her breathing issues. She observed that Allyson's oxygen level drops when she takes her bottle because she is mostly a "mouth breather". Her right nostril is almost completely closed off due the the NAM and the "work" it's doing and her left nostril has a limited amount of air passing through it. The PT indicated that Allyson might need to go on oxygen while she's being fed. When Allyson chokes and coughs during her feedings, it's most likely because she's not getting enough oxygen and that's her natural reflex to clearing her airways. She also told us to not spend more than a half hour feeding Allyson REGARDLESS of how much she takes. The PT explained that when we spend longer feeding Allyson, she actually is expending MORE calories than she's taking in. So, we're back to a "feeding regimen" of every 2 1/2 hours with this higher calorie formula (it's 25% MORE calories than regular formula). She seems to be doing better and is keeping most of the formula down. We'll see Dr. Huang later this week for a "weight check". Hopefully there will be GOOD news to report!

Sunday was a "bum around the house day" and prepare for the Oscar's last night. Morgan was a ballerina for most of the day and entertained us with a couple of "shows." She took a 20-minute bike ride to the park with Aunt Ashli in the afternoon and had fun biking, swinging, playing, and climbing. She was tuckered out from all the activity that she needed a ride back home. All seemed well and "normal" until about a half and hour after we arrived back at the house. It seems Morgan has a stomach bug and has thrown up four times in the past twelve hours. She's been "up-chuck free" since midnight (it's now 7:30am here), so we hope she's on the mend. Aunt Ashli will stay home with her today while I take Allyson to see the gastroenterologist. We're still keeping that appointment (even though her spit-ups have been minimal over that past few days) in order to rule out any major gatro problems.

So that's the scoop from here! Keep us in your thoughts today as Morgan gets better and Ally stays well - we hope! Aunt Ashli is fighting off a sore throat and stuffy nose as well... We're "armed" with surgical masks and LOTS and LOTS of hand washing for everybody.

Happy Monday!

Kristin

Friday, February 25, 2005 10:14 AM CST

Good morning! Yes, we've had two sunny days in a row here in California. Aunt Ashli arrived yesterday morning. My plan was to pick her up at the airport and then go to the hospital for Ally's appointment. However, due to some major road closures as a result of the recent rainfall(like Pacific Coast Highway), the overflow traffic ended up on the freeway I was travelling! Needless to say, my 62 mile drive to the hospital took 2 1/2 hours yesterday. Fortunately, Ashli's good friend, Michelle, was on "stand by" in case Ashli's plane arrived late. Michelle ended up getting Ash at the airport and brought her to the hospital to meet and Ally and me. All was well after that!

Ashli met Dr. T and Dr. Yen and observed the NAM adjustment process. Dr. T. made minimal adjustments and was once again pleased with the progress Allyson had made over the past week. Our appointment lasted just a half hour (it usually lasts over an hour), so we had time to take a quick tour of the hospital, grab some lunch in the cafeteria, and still get on the road before rush hour! I know Ashli was glad to be there and see everything....

OK - CHANGE IN WRITERS! I have learned how easily this can occur in the Kelso home so it's Aunt Ashli now mid-journal... I was about to have some success in feeding Ally, which has become quite the challenge again, then we changed bottles back to what she used weeks ago and Mommy is going to try again. Ally seems to WANT to eat but getting that nipple "jammed" in her mouth but ON TOP of her tongue is quite the struggle! Trust me, if you look up the word PATIENCE in the dictionary, I bet there's a picture of Kristin next to it. I could not be more proud and in awe of her!! Anyway, where was she in this journal? Ah yea, the doctor's appointment yesterday! It was special to me to finally meet dear Dt. T and Dr. Yen and see Ally's digs at CHLA yesterday. Of course being at CHLA, you realize how blessed and lucky you are to have a healthy child/niece since I didn't have to look far to see little ones with very severe challenges and in various forms of mobility.

Last evening was great when we went to Morgan's school to pick her up and she was surprised to see her "big" Aunt Ashli (Morgan has a new friend named Ashley and took to calling HER "aunt ashley" so I am now the BIG Aunt Ashli... grrrreeeeaat ;) -- she ran to me and was so happy that I came to visit. Then of course she follow up with stating that she was going to the airport to Teetay and Geep's house soon! That little gal doesn't miss a beat! We had a nice ride home where Morgan serenaded us with her beautiful (and very serious) singing of all her princess cd songs. We got home to ride her princess bike that she reminded me that me and Uncle Tommy gave her. She's a rock star on the bike and likes to go FAST! We spent some time swinging too then I was the chosen one for bath time. All the joys of aunt-hood rolled up in one great evening - and I just got here so plenty more to come!

My aunt-hood was challenged when I was in a "what do I do" state when I heard many gurgles and sucking from Ally in the night (the twin guest bed is in Ally's room). I guess these little sucks and slurpy noises are not detected in the monitor in K&M's room and I wasn't sure if they were normal or if she was hungry. I turned on the little light to see Ally sleeping away but sort of sucking at her NAM and grasping her hands together, which Kristin has said is her hunger-sign. So around 12:30 I went to their room to announce this Ally slurpy noises and Kristen attemped a wee hour feeding. To no avail, Ally was asleep again and so were we!

Mark, Kristin, Morgan and Ally are are WELL and this home is peaceful, calm and loving - of course!! Morgan plays and adores her little sister and shows me all her stuff and how Morgan works the diaper champ. Ally sleeps peacefully and just squirms and sleeps and looks around like the precious little baby she is... And my brother-in-heart (thanks for the term, Aunt Dale!) is BACK - sort of like a "real boy" (a la Pinocchio! :) and I was so happy to see him back to his cooky normal self. And Kristin, well, she's my best friend and sis in the world and in her true selfless way, she was all about talking about ME and the wedding details and the house move and everything "Ashli" (and TG too!). We all enjoyed some margaritas and catching up in person. So happy to be here and back in their special world first-hand for a few days!

Happy Friday to you all and happy early birthday to Aunt Dale aka Aunt Grammy aka Kristin's namesake TOMORROW!! We love you!

Thanks to you ALL for your continued thoughts and prayers! Off for a day of shopping and lunch with Kristin and Ally... what else did you expect us to do!??!

-Ashli / Aunt Atchwee / the Big Aunt Ashli!... with "forward" by Mommy Kristin :)

Tuesday, February 22, 2005 5:11 PM CST

Hello all! Today is Allyson's 2 month birthday! Hooray! It's definitely a TOP news story here along with 2.5 inches of rain falling each hour; tornado watches; freeway closures; AND an exotic cat roaming Ventura County (yes, I'm serious!). Of course, we commemorated this birthday with 3 shots (no, not the alcoholic version) and a visit to the pediatrician. Ally took the shots well and can't wait to show off her Snoopy bandaids to big sister, Morgan!Here's the latest update on the visit:

Allyson continues to have "good" and "bad" feedings. One day, her spit ups will be minimal and another day they're excessive. We've stuck with the Enfamil A.R. since Friday, but with mixed results. When Dr. Huang weighed her this morning, she had only gained ONE OUNCE in three weeks. She should have gained 10 ounces. So, with basically no change in her weight, Dr. Huang is concerned... as are we. He would like to put her on a higher calorie formula (Enfamil 22cal), but we're concerned about the spitting up. He also gave us samples of Nutramigen (it's a hypoallergenic formula that's easy to digest and is designed for babies who are allergic to cows milk protein),however, it doesn't have any extra calories to help her gain weight. So, we're going to proceed with trying different formulas and "recipes" until we find one that Allyson can digest AND gain weight. Dr. Huang has also referred her to a pediatric gastroenterologist to determine if she does have acid reflux or another gastroenterological problem. Allyson has an appointment to see Dr. Cynthia See in West Hills (yet another trip to the LA area!) on Monday, February 28th. Hope Aunt Ashli doesn't mind going to all these doctor's appointments while she's here! Maybe I'll even let her drive us to one of them and I'll take a nap! ha ha

The good news is that Allyson is getting taller - she now measures 22 inches. Her head measurement was about the same as three weeks ago. Dr. Huang said her color was good, her ears looked fine, and her lungs were clear. She sounds a little "gurgly" most of the time because of the mucous that collects in her nose/mouth and the saliva that seems to pool in her throat. Dr. Huang said to watch for signs of aspiration and changes in her breathing since we're still in cold/flu season and he doesn't want to see her get sick. He even called me at home after her appointment because he had an idea to give her another shot for RSV (the respiratory infection that often affects premature babies and can be deadly). Allyson, of course, is not premature and she's not in danger of getting RSV, but it carries antibodies that would help prevent her from getting sick over the next couple of months. Dr. Huang isn't sure if he can even get the shot and he knows that insurance would not cover it for the aforementioned reasons. Dr. Huang offered to pay for the shot IF he's able to obtain it... and it costs $1000!!!! Unbelievable! He truly is an angel among us...

Do you want to know more about wonderful, loving, caring Dr. Huang??? As I was checking out with the receptionist and preparing to write a check for our co-pay, Dr. Huang walked up and said "no co-pay." The receptionist explained that we were Tricare Standard which carries a 20o-pay to which Dr. Huang said "Not for them. No co-pay from now on. They have enough doctors to see and a lot of other co-pays. I'll cover it if we get billed. I'll write it off." I didn't know what to say... I had tears in my eyes as I left and thanked him. When Dr. Huang called at home an hour later, he told me that he was going away for a few weeks in March to do mission work in China. He told me that he wanted to see Allyson again before he left on March 5th... just to weigh her and see how she was doing so he wouldn't worry about her while he was in China... ah, Dr. Huang has touched our hearts again.

So, that's all for now. We're doing our best to stay dry and entertained with indoor activities!

For those who have wondered, I heard from Darren's mom, Cat, on Sunday. She said that he was out of the hospital, but that the doctors are still puzzled by his rash. Apparently he has a staph infection that's been resistant to antibiotics. The first med they tried made him sick to his stomach, so they're trying another now. If it doesn't work, he may have to return to the hospital. Please continue to keep them in your prayers.

Happy Tuesday!

Kristin

Saturday, February 19, 2005 10:04 AM CST

Another rainy morning here! Looks like most of the U.S. is rainy or snowy today. Thought this yellow background would bring some sunshine into our day.

Allyson is doing much better with her formula. We're now using 100% Enfamil A.R. (for babies who spit up) and it seems to be working. She is spitting up less and seems content with this formula. We're also feeding her every 3-3.5 hours during the day and "letting her go" at night. For the past three nights, she's been sleeping from 8pm to 2am (give or take a half hour) and then again until 8:30am. Not bad for an 8 week old!

The adjustment made to her NAM device on Thursday does not seem to be bothering her as much this week. Allyson's left cheek is very red and irritated, however. When Dr. T. made the adjustment and angled the tape and rubberband on the left side, the steri strip got stuck to her face and not to the base tapes. When we took the NAM out and removed the tape on Friday, the steri strip actually tore her skin and caused it to bleed. Poor Allyson! We left the NAM out for about an hour and put Neosporin on her cheek. It helped some, but it's still red. The CVS bandage now covers the affected area and should help it heal in a few days. You can see the redness in the newly posted pictures.

We also met with the coordinator for Early Intervention Serivces yesterday. Allyson will start receiving services from local resources who will help us with her physical and emotional development. She will be evaluated at each six-month birthday to see if she's meeting the goals we have for her. For example, goals for June 2005 include sitting up, grasping and reaching for objects, rolling over, eating baby food, responding to various positive and negative stimuli, kicking at objects, following sound and movement with her eyes, etc. The program director, Pablo Velez, from a local organization called "Amigo Baby" will visit us at home twice a week and teach us to help Allyson. She will continue to receive resources as needed up to age 3 (then she becomes part of another federally funded program). Our first home visit will probably be the week of February 28th. We'll let you know what we learn!

Hope you all have a good LONG weekend! Happy MOVING DAY to Ash and TG as they settle into their newly remodeled Georgetown digs. Not sure what our plans will be... Morgan has requested a trip to the mall. Don't you just love it?!?! At three, she loves going to the mall - I've trained her well!

Hugs to you all and those around you!
Kristin

Friday, February 18, 2005 12:42am CST

Good evening! Yes, we're a little weary from our 2 hour drive back in the rain tonight and a fussy Allyson for half the ride, but all is well.

Allyson's appointment went well today. Dr. T. examined the current state or her palate compared to the impression made three weeks ago. When we started the NAM process, Allyson had a "gap" in her palate measuring approximately 1 centimeter on each side... meaning that her premaxilla (the part that protrudes from her mouth) needed to move that distance backwards to close the gap. Well, after three weeks with the NAM device, the right side has moved 5mm (half the distance it needs to) and the left side has moved 4mm. (For those who are metrically challenged, there are 10 mm in 1 cm.) Dr. T. was VERY pleased with her progress. He said that normal results yield a change of 1 mm per week, however, Allyson is progressing more quickly than average. Hooray! We will continue with the same taping methods from this week and see Dr. T. again next Thursday. Aunt Ashli will get to accompany Allyson and me and make her first visit to CHLA. I can't wait!

Mark and I also had our first opportunity to "pay it forward" as Allyson was getting her NAM adjusted today. New parents, Judith and Brian, came into the examination room with their 2-week old son, Aidan. You see, Aidan was about to have his impression made so that he could be fitted with his NAM device next week. Judith and Brian came to see Allyson's device "in action" and Mark and I were able to answer a few questions for them. We didn't get to talk for very long, but I gave them our phone number and e-mail address so they can contact us down the road. So now there are two NAM patients at CHLA, and we are the veterans! I hope this new family will call us... although I don't know "everything" and probably won't ever, I can still enlighten Judith and Brian on some of the resources I've come across in our journey-to-date.

So, that's our update for tonight. I'll take new pictures to post tomorrow.

Good night and God Bless-
Kristin

Thursday, February 17, 2005 10:38 AM CST

I know everyone has probably been awaiting a journal update this week... honestly, there hasn't been much to report. We're travelling to LA today for Allyson's NAM adjustment. As you can see from the pictures, her lip has definitely changed and appears to be pointing downward now - almost a 90 degree change from where it was. Mark and I haven't seen much change in moving the premaxilla back into her mouth, but maybe the doctors will see a difference. We're much more adept at changing the NAM and retaping her mouth than we were three weeks ago, so that's a good thing.

Allyson hasn't been eating very well this week. She seems to be spitting up more than usual - not just during her feeding which is more spit OUT than spit UP - but hours after she's finished as well. I called the pediatrician to see if he thought it might be reflux. He encouraged us to feed her smaller meals more frequently and keep her upright for 15 minutes after she eats. So, we've put Allyson AND ourselves back on the 3-hour feeding regimen during the day. We're letting her sleep during the night. The NEW plan is sort of working - sometimes she'll eat when we say "it's time," and other times, she just doesn't want any part of it! We're also planning to talk to Dr. T about the issue today - her inability to swallow well could be associated with the size of the NAM and how much room it's taking up in her mouth... at least that's what I think. Allyson hasn't lost any weight, but she hasn't gained weight in about two weeks. She still weighs right at 9 lbs. with clothes on. Our next appointment with the pediatrician is Tuesday for her two month check-up.

Morgan is doing well. Our "tough love" approach to bedtime seems to be working. After her two stories, she's falling asleep by herself and not coming out of her room until morning. Some of you know that Morgan has been having "bedtime issues" for the past four months or so and insisted on me lying with her until she fell asleep. The whole bedtime ritual would last an hour or more each night! We're glad that she's doing better - it makes us all a lot happier at night AND in the morning!

Mark has been able to get more involved with "E-2 work" this week. He's been assisting with simulator training and seems to like being able to fly again - at least simulated flying. He'll be instructing and evaluating a group of junior NFOs over the next couple of weeks while they're here training from Fallon, NV. Still no NEW news on when his head injury will be evaluated by the Navy doctors - probably the end of March or early April. Then, we'll know his "flying fate" definitively.

Off to LA now... I'll post another update after our appointment this afternoon.

Kristin "out"

Sunday, February 13, 2005 11:17 PM CST

HAPPY VALENTINE'S DAY! HUGS AND KISSES ALL AROUND TODAY!

We've updated all the photos so you all have something NEW to look at this Valentine's Day morning. We've tried to get Morgan to pose for another picture holding her baby sister, but with no luck! This side-by-side picture in their matching Valentine's denim outfits was the best we could get... and we had to bribe Morgan with the sweet tarts hearts at that!

Anyway, the rain stopped early Saturday and we had a great weekend here! (Other than having to pay ANOTHER visit to our rowdy neighbors' house at 12:30am to tell them to quiet down AGAIN!) We all went to see "Pooh's Heffalump Movie" after enjoying Happy Meals at McDonald's. Morgan ate her hamburger and Allyson had chicken nuggets - ha ha! The movie was very entertaining and carried a great message about accepting those who are different and not judging others before you get to know them. Morgan was engrossed in the film and Allyson even seemed to be watching it for a short time before she drifted off to dreamland. It was fun being out together and enjoying time as a family!

Sunday was another low-key day. Morgan was Minnie Mouse all day and I was Mickey. She sang and danced and really entertained herself well. Allyson was a sleepy head today and napped quite a bit...we're not complaining, but I hope that doesn't mean she'll be awake tonight! Mark spent some time studying for his JPME exam and I organzied Allyson's pictures in her photo album (shocking, I know!). We caught up on laundry and bills and general housework... nothing glamorous, but necessary!

I must confess that Mark and I were just beside ourselves about an hour ago. At 8:30pm, both Morgan and Allyson were asleep, we had finished dinner, and had finally caught up on all the episodes of "24" we had on Tivo. Now, that might not sound like a huge accomplishment to some, but those of you who know Morgan's bedtime ritual and our tendency to eat late and the backlog of Tivo'd shows we have should be mighty impressed! We looked at each other and said, "now what do we do?" The answer... Mark returned to his studying and I went to the computer to update the website. Aren't you all glad? :-)

Now it's time to get to bed before one of the princesses decides to awaken... hopefully, I'll get a few hours of sleep before that happens!

Happy Valentine's Day to you all!

Happy 34th Anniversary to Mom and Dad/Teetay and Geep!

Thank you, as always, for loving us and supporting us and offering such encouragement to us everyday!

Kristin

Friday, February 11, 2005 11:32 AM CST

It's a rainy morning here in California, but our spirits aren't dampened! Allyson continues to do well with the NAM device and the new taping methods. Feeding her is challenging at times. She seems to be salivating more and it causes her to cough and sputter more than before. Her eating schedule has been a little unpredicatable over the past couple of days... just when we thought we were getting into a pattern, she changes it on us!

After a restless night on Wednesday for all of us... Allyson woke up twice and Morgan woke up twice... of course, not at the same time, we had a better night last night. Allyson was fed at midnight and then slept until 8:15 am! Now that's the kind of schedule we're hoping for!

We don't have any big plans for this Valentine's weekend other than spending time together. Morgan wants to see the Winnie the Pooh "Heffalump" movie, so we'll probably venture out to see that. Allyson will surely enjoy her first big screen flick!

Happy Valentine's Day to you all! Give big hugs and kisses to those around you that you love. We'll be doing that here!

Kristin


FEBRUARY IS ECTODERMAL DYSPLASIA AWARENESS MONTH!

Many of our friends and family have asked how they can "help" us as we continue Allyson's journey. As I am becoming more and more informed about resources and support networks, I came across this opportunity to help and I wanted to share it will all of you. Please copy the following links to your browser to learn more about ED Awareness Month and make a donation to the NFED if you are so inclined. Thank you!

http://www.nfed.org/FebAwareness.htm

http://www.nfed.org/form.htm

You can make a real different in the lives of children and adults affected by ectodermal dysplasia syndromes by supporting the National Foundation for Ectodermal Dysplasias. When you donate to the NFED, your gift will immediately go to work to provide support services and hope to our families affected by ED. You can be assured that the NFED uses its funds wisely as 87 cents of every dollar raised is spent on family services, education, research and treatment.

Wednesday, February 9, 2005 9:55 AM CST

Allyson had another good appointment with Dr. T at Children's Hospital yesterday afternoon. He was pleased with her progress and how much her lip had turned down in just five days since our last appointment. He reviewed pictures from last Thursday and compared them to her current appearance.

The next step of the process involves moving the palate, which is protruding from beneath her lip, back into her mouth. Dr. T. added a LOT of acrylic to the front of the NAM device, essentially created a wall to force the mass backwards. Because of all the acrylic, Allyson is not able to open her mouth as wide and we have to force the bottle in between the acrylic and her bottom lip. It doesn't seem to bother her, but it's a little awkward for us. The rubberbands are now stretched VERY tightly (to their maximum) and the tape is angled sharply up her cheeks. Prior to yesterday, we were positioning the tape nearly horizontal with just a slight angle. Check out the new picture at the top of the photo page. We are also continuing to tape Ally's lip to encourage the downward movement. However, the tape is now positioned at the tip of her lip versus close to her nose. We'll return the CHLA for our next appointment on Feb. 17th. Dr. T. said we should definitely see a big difference in 10 days. Dr. Reinisch, the plastic surgeon, also saw Allyson yesterday for the first time in two weeks and he immediately noticed the change in her appearance. We should be seeing him next week as well.

Allyson had another great night of sleeping. She fell asleep around 8pm and slept until almost 4am. Maybe she was just worn out from her doctor's appointment, but we were happy for the "chance" to sleep as well... I say "chance" because I think I woke up every hour or so "thinking" that it was time to feed her. I just listened to the monitor expecting her to wake up any minute. Morgan also woke up in the night. Seems she had somehow set the alarm on her Princess clock and it went off at 12:45 am. So I was up with her for a little while. Mark told me to get some sleep today, but I said I was "too busy." I do feel rested though in spite of the semi-sleepless night. Maybe that's what I'll give up for Lent this year... "sleep"... ha ha! :-)

Anyway, enough about me... Enjoy the two new pictures of the girls. Have a great Ash Wednesday!

Kristin

Tuesday, February 8, 2005 9:21 AM CST

Good morning! Morgan actually held Allyson for the first time by herself last night. Don't the girls look cute in their Valentine's Day pajamas? After about 30 seconds of holding her, Morgan said "Mommy, she's too heavy." Well, Allyson IS weighing just over 9 pounds now!

Morgan is being such a sweet big sister. When Allyson is crying in her crib, Morgan likes to go upstairs with me and stand on the stool and look at her. Before I can even say anything to comfort Allyson, Morgan says to her, "It's okay, Allyson. Don't cry, Mommy's here." How sweet she is! Allyson definitely responds to Morgan and watches everything she does. I know from experience that she'll probably be eyeing EVERYTHING her big sister does for many years... right, Ashli?

We are doing well with learning Allyson's schedule. She's consistently had 6-7 hour stretches of sleep at night for the past 4 nights now. Do I sense a pattern? On average, she's sleeping from 9pm to 3am or 4am and then again, after feeding, until 7:30am or 8am. Allyson has been taking a LONG morning nap (perhaps finishing her "night") after "breakfast" and sleeping 3 to 3 1/2 hours. I think we're figuring her out! Mark and I have been doing well "on our own." Saturday night we were both wide awake at 3am and "argued" over her would feed her in the middle of the night. Mark won that round - I'm no dummy and I know when to take advantage of sleep when it's offered!

Changing Allyson's NAM device has become easier as well. Her skin is also doing much better thanks to the CVS bandages. It looks like her lip is moving down. We'll see what Dr. T has to say when we go to our appointment in LA today. I'm curious to see what the next phase of taping and rubberbands will be or if we will continue with this current method. More updates tonight or tomorrow!

Have a great day! Hope it's warm where you are. We've gotten a little "chilly" here... highs around 60 degrees. I'm sure no one feels sorry for us, except maybe Cat in Hawaii!

Kristin "out"

Sunday, February 6, 2005 9:11 AM CST

Good Sunday morning to you! I received an e-mail from my friend, Wendy Pease, in Ohio this morning. She has become a champion advocate for her son, Casey, who has special needs. I was so touched my the message she sent me that I wanted to share this with you all. Wendy found this in a magazine article several years ago. It serves as answer to the "why me?" on the tough days.

Have a great day!
Kristin

THE SPECIAL CHILD

The child, yet unborn, spoke with the Father,

Lord, how will I survive in the world?

I will not be like other children.
My walk may be slower, my
speech hard to understand. I may look
different. What is to become
of me?

The lord replied to the child.
"My precious one, have no fear.
I will give you exceptional parents. They will love you
because you are special, not in spite of it. Though
your path through life will be difficult your reward will
be greater. You have been blessed with a special ability
to love, and those whose lives you touch will be blessed
because you are so special."

Friday, February 4, 2005 10:40 PM CST

The homepage picture represents some special cuddling time (in our jammies!) with my two girls last night. Morgan climbed up in my lap while I was feeding Allyson asked about Allyson's NAM device and wondered if it hurt her. I assured her that it didn't, but she took Ally's hand anyway, and said "it's okay, Ow-wee-son" in her sweetest big sister voice.

Allyson got a "new look" yesterday when we saw Dr. T for her NAM adjustment. He was pleased with how much her lip/nose had shifted and it's pretty well aligned in the center of her face now. The tape across the top of her lip will help guide that portion down and closer to the sides of her lip where it should be joined together. The NAM is in the same place, but he removed some of the acrylic from the front of it so her lip would have room to move downward. Dr. T said to think of her lip like it is hinged to the bottom of her nose. This newest step will move the lip 90 degrees downward at that hinge. There's a better picture at the top of the photos page. We still have to change the tape and the rubberbands daily. We're also using a multi day use bandage (CVS brand that Dad sent out to us because we couldn't find something similar here). This seems to be less irritating than the tegaderm and Dr. T really liked it. He asked me to send him the link so they could order some for the hospital. This CVS bandage was recommended by another mom in New York whose daughter wore the NAM last year. Thank you, Jackie Dooley for the suggestion!

So that's the update from here. Mark, Morgan, Allyson, and I survived our first day and night "on our own." Each day gets better and better... Hope you all have a good weekend! Go Eagles! How 'bout that, TG? (Ash, make sure he knows I wrote that for all the world to see!) :-)

Kristin

And in case you haven't heard...

FEBRUARY IS ECTODERMAL DYSPLASIA AWARENESS MONTH!

Many of our friends and family have asked how they can "help" us as we continue Allyson's journey. As I am becoming more and more informed about resources and support networks, I came across this opportunity to help and I wanted to share it will all of you. Please copy the following links to your browser to learn more about ED Awareness Month and make a donation to the NFED if you are so inclined. Thank you!

http://www.nfed.org/FebAwareness.htm

http://www.nfed.org/form.htm

You can make a real different in the lives of children and adults affected by ectodermal dysplasia syndromes by supporting the National Foundation for Ectodermal Dysplasias. When you donate to the NFED, your gift will immediately go to work to provide support services and hope to our families affected by ED. You can be assured that the NFED uses its funds wisely as 87 cents of every dollar raised is spent on family services, education, research and treatment.

Also, Allyson is now part of the Cleft Advocate Photo Gallery. The link is below. You can see some amazing "before and after" pictures of other children who have successfully used the NAM device. Check out Heather, a beautiful 24 year old with EEC syndrome and our new friend, Darren Potter, in Hawaii.

Wednesday, February 2, 2005 11:25 PM CST

As a tribute to Teetay/Mom and all that she's done for us, I've updated the home page picture with this GREAT photo taken last night. Their smiles say it all! Teetay loves her granddaughters and they love her so much.

Mom will head home tomorrow after spending the last 51 days with us... I haven't been counting, but maybe she has! After arriving December 14th in anticipation of Allyson's birth (which we expected to come early) to tomorrow's departure on February 3rd... it's been one helluva roller coaster ride! Who knew how much our lives would have changed back on December 14th when Mom and Dad first arrived at our house?

Anyway, I don't need to chronicle all that has happened since Teetay "moved in," but I DO need to thank her for all she has done and thank YOU ALL, her closest friends and our family, especially my dad and sister, for letting her be here with us. She has obviously been missed by many and will be overwhelmed by visitors and catching up and getting to know her students again on Monday... She has sacrificed a LOT by staying here with us for so long, but those who know Mom/Teetay/Terri/Mrs. Matus, are aware of her loving, caring, nurturing, and understanding ways and you KNOW that she wouldn't have been anywhere else but here when we needed her most.

Mom, I know I've said this to you already, but I want to say it to "the world" as well. Thank you for being here and doing everything you could to help us during this time of challenges and uncertainties. I love you and I will miss you so much after you leave tomorrow. I look forward to your next visit and I can't wait to come see you in March. Thank you for everything!

Love,
Kristin


FEBRUARY IS ECTODERMAL DYSPLASIA AWARENESS MONTH!

Many of our friends and family have asked how they can "help" us as we continue Allyson's journey. As I am becoming more and more informed about resources and support networks, I came across this opportunity to help and I wanted to share it will all of you. Please copy the following links to your browser to learn more about ED Awareness Month and make a donation to the NFED if you are so inclined. Thank you!

http://www.nfed.org/FebAwareness.htm

http://www.nfed.org/form.htm

You can make a real different in the lives of children and adults affected by ectodermal dysplasia syndromes by supporting the National Foundation for Ectodermal Dysplasias. When you donate to the NFED, your gift will immediately go to work to provide support services and hope to our families affected by ED. You can be assured that the NFED uses its funds wisely as 87 cents of every dollar raised is spent on family services, education, research and treatment.

Also, Allyson is now part of the Cleft Advocate Photo Gallery. The link is below. You can see some amazing "before and after" pictures of other children who have successfully used the NAM device. Check out Heather, a beautiful 24 year old with EEC syndrome and our new friend, Darren Potter, in Hawaii.

Have a great day!
Kristin

Wednesday, February 2, 2005 4:30 PM CST

FEBRUARY IS ECTODERMAL DYSPLASIA AWARENESS MONTH! Many of our friends and family have asked how they can "help" us as we continue Allyson's journey. As I am becoming more and more informed about resources and support networks, I came across this opportunity to help and I wanted to share it will all of you. Please copy the following links to your browser to learn more about ED Awareness Month and make a donation to the NFED if you are so inclined. Thank you!

http://www.nfed.org/FebAwareness.htm

http://www.nfed.org/form.htm

You can make a real different in the lives of children and adults affected by ectodermal dysplasia syndromes by supporting the National Foundation for Ectodermal Dysplasias. When you donate to the NFED, your gift will immediately go to work to provide support services and hope to our families affected by ED. You can be assured that the NFED uses its funds wisely as 87 cents of every dollar raised is spent on family services, education, research and treatment.

Also, Allyson is now part of the Cleft Advocate Photo Gallery. The link is below. You can see some amazing "before and after" pictures of other children who have successfully used the NAM device. Check out Heather, a beautiful 24 year old with EEC syndrome and our new friend, Darren Potter, in Hawaii.

Have a great day!
Kristin

Tuesday, February 1, 2005 8:30PM CST

Today has been a pretty good day. Allyson's red cheek is a little better. We replaced the tegaderm tape last night and made it a little smaller so that some of the affected area was able to "air out." We put aquaphor on the red area before applying the new tape, and that seemed to help. I got lots of great advice from other moms on cleftadvocate.org who had/have children with the NAM device.

Allyson saw her NEW pediatrician today, Dr. Huang, who gave her a six-week well check-up. She's doing very well according to Dr. Huang. Ally now weighs 8lbs. 12 oz (with clothes on - when we weigh her at home, she's naked), and is 21 1/4 inches long. Both measurements place her around the 50ercentile. Yeah, Ally! Mark really enjoyed meeting Dr. Huang for the first time. I had met him the morning of December 22nd when Allyson was 6-7 hours old as he was the on call pediatrician who first examined her at the hospital. Of course, he knew "our story" and told Mark how pleased he was to see him up and about. Dr. Huang had actually attempted to visit Mark while he was in ICU, but Mark wasn't awake when he stopped by. So, Dr. Huang sounds like a pretty cool doc, doesn't he? How about another God-incidence or "God wink" (a new term we heard this week)? Dr. Huang is from Taiwan... I was born in Taiwan and was delivered and taken care of by Taiwanese doctors and nurses. A God wink? Yes, I think so. Again, there was a reason he was the pediatrician on call the morning of December 22nd. We felt special to have Dr. Huang's undivided attention this morning during our appointment. He obviously cares about us already and has a very loving demeanor with his patients. Dr. Huang concluded our visit by giving Mark a big hug, and yes, stunning the "tough guy" wearing his flight suit.

After Ally's appointment, Teetay, Ally, and I enjoyed lunch at the mall where Allyson had her "best" feeding in recent days and we did a little window shopping. She's had a pretty routine day overall with regular patterns of eating, sleeping, and "playing." Teetay enjoyed a much needed massage this afternoon (I'm getting a massage tomorrow morning!) and Morgan had fun playing catch outside.

All in all a GOOD day for all! Hope you all had good days too...

Kristin

Sunday, January 30, 2005 12:10 AM CST

Good Sunday morning to you all! We have completed two successful days on "Allyson time." Beginning Friday, we started letting Allyson "tell us" what she wanted and when... and relaxed our 12-3-6-9-12-3-6-9 high maintenance feeding schedule. Of course, Ally is still getting used to her NAM device and we still want her to get the nutrition she needs, so we're still in control a little bit! Anyway, she's shown us two nights in a row that she can sleep 6-7 hours at a stretch! Yippee! On Friday night, she slept from 9:30 pm to 5 am. Last night she slept from 10 pm to 12:45 am and again from 1:30 am to 6:45 am. We've also switched formulas and are using Enfamil A.R. which is designed for babies who spit up. We had been noticing that Allyson was spitting "out" more of the regular formula during her feedings (even before she got the NAM device.) I'm not sure if it's really acid reflux (we'll ask the pediatrician at her appointment on Tuesday), but she seems to like this new mixture and the amount that's coming back out is reduced. We'll keep you posted on that one!

I'll make this short for today... Morgan is cuddled up in my lap right now "requesting" to take a nap. She has a sore throat and stuffy nose today. Teetay has also been treating a head cold and sore throat for the past couple of days as well. We're doing our best to keep us ALL healthy!

Have a good day! Thanks for all the warm and thoughtful messages in the guestbook. We love reading them!

Kristin

Friday, January 28, 2005 6:08PM CST

Just wanted to tell everyone about Allyson's opthamologist appointment today. Her eyes look GOOD and the doctor sees no problems other than her dry eyes, which is a characteristic of ectodermal dysplasia (the second "E" of EEC Syndrome.) Her optic nerve is healthy and in-tact which were the primary concerns. So, good news there! The doctor will see her again in April to see how she's doing. Have a great weekend! More pictures of Ally and "the NAM" are coming.

Friday, January 28, 2005 8:27 AM CST

Good morning to all! I know you've been awaiting my update and pictures of Allyson with her NAM device.

All went well yesterday as we travelled to Children's Hospital. We spent about 2 and half hours with Dr. "T" (actually his name is Dr. Amornpong Vachiramon, but "T" has been his nickname since he was a kid in Thailand). Watching him create Allyson's name device was like watching a skilled sculptor at work - it's truly amazing. He fitted the device three times in her mouth and added more acrylic and polished it to get just the right fit and adjustment. Allyson was great throughout the experience and only fussed when the NAM device was put in her mouth. Once it was in place, she seemed to like it! Feedings are going much better (and more quickly) now that she has a palate to thrust her tongue against.

She will wear the device in it's current position for the next 4-5 weeks. This initial "step" of the process is designed to realign her lip and nose. If you look at pictures of her, you'll notice that her nose and lip are skewed to the left. The device and the bands that hold it in place will shift everything back to the right and line her nose and lip up in the center of her face. Pretty cool, isn't that? Once the alignment is complete, then "step 2", the process of bringing down her lip, will occur.

We are so excited to start this experience. Mark and I were much more relaxed talking to the doctors yesterday and they were impressed with the research we had done on the Internet and the knowledge we had gained about the NAM device in just a couple of days. The device is much easier to work with than we thought it would be - it fits in her mouth fairly easily and the bands are easy to attach. I was concerned about putting all that tape on her face for the next 3-4 months, but was reassured when the doctor first put Tegaderm tape on her cheeks to protect her skin. Then, the sterile tape adheres to the tegaderm and not to her delicate skin. Again... amazing!

Allyson was a "Hollywood star" as several residents came in to observe Dr. T and learn about the device. Allyson will probably be videotaped during future visits so that Dr. T and his team can use her case for training purposes. We knew she'd make it into the movies before too long... this IS Hollywood afterall...

Grandma K. heads back to N.C. this morning. It has been so wonderful having her here. She has been such a tremendous help in taking care of Allyson and playing with Morgan. Did you know that Grandma K. can do the "sit and spin" and is a pro at playing "hi-ho cherrio"? We will miss you, Grandma, and hope that you and Grandpa will be back to visit "your girls" (and Mark and me) soon!

Thank you all for keeping us in your thoughts and prayers as we begin this journey. We'll have weekly appointments each Thursday at Children's, and we'll keep you abreast of what's going on. Have a great day!

Kristin "out" from Rainy (again!) California

Wednesday, January 26, 2005 10:19 PM CST

Tomorrow we head to LA to get Allyson's NAM device. There are new pictures on the site tonight and we'll update again tomorrow night with "after" pictures.

Check out some of these links that discuss the Nasoaveolar Molding (NAM) Device...

www.med.nyu.edu/hcsolutions/mar99/cleft2.html

www.drstelnicki.com/2cleft.htm

www.cleftadvocate.org/parade.html


Tuesday, January 25, 2005 8:09 PM CST
And the big news is... Allyson is NOT having surgery on Wednesday, January 26th... AND THAT'S A GOOD THING!!!! Please read on...

We went to our pre-op appointment today, registered for the surgery, the whole nine yards... Then we met with Dr. Reinisch, the plastic surgeon, and he proposed a new non-surgical course of treatment for Allyson. Let me explain this the best I can...

Allyson will be fitted for an orthodontic device called a NAM (Nasoaveolar Molding). This is used as a non-surgical method of reshaping gums, lips, and nostrils before cleft lip and palate surgery which lessens the severity of the cleft. The device will be installed on Thursday, January 27th and she will wear the NAM molding 24 hours a day for the next 3-4 months. THEN, she will have her lip surgery.

The molding will fit into the roof of her mouth (like a retainer) and will actually create a false palate for her. There are two cylindrical pieces that extend from the device out of her mouth. Orthodontic rubberbands are attached to these cylindrical pieces and then taped to her face. It does not push or stretch the delicate tissues in her mouth; it only helps gently redirect the growth of her gums. It causes no pain and is usually accepted by babies as a part of their face after a few days.

There are many "pros" to using this device. As Dr. Reinisch explained, the device does the same thing as the lip adhesions (the surgery she was scheduled to have tomorrow), but "in a much more elegant way." He also added that while he can make her lip look great through surgery, there are still problems with the nose and it usually requires 3-4 surgeries between birth and her teenage years. By using the NAM device first, Allyson may have one additional nose surgery. Using the NAM now may also eliminate other surgeries down the road, including bone grafts (from her hip) to be put in her palate. When faced with decision of whether to DO this or not (it was our choice...), the greatest benefit we saw was that Allyson would not have to endure as many surgeries down the road and the results would be better (although the process is a little more time consuming.)

The only "cons" are that we will have to travel weekly to Children's Hospital LA for the next 3-4 months to have the NAM molding sculpted as Allyson grows and her gums start closing together. We also have to be diligently involved in adjust the rubberbands and tape daily and making sure they're in the right place and have the right tension to do their job. We'll also have to deal with Allyson possibly knocking the tape loose or grabbing at the device with her VERY active hands.

It was quite an exhausting day as we learned of this device and tried to digest everything the plastic surgeon and orthodontists were telling us. The doctor who will create and install the NAM recently did a clinical rotation in New York at NYU Medical Center with Dr. Barry Grayson who created the NAM and pioneered this method. In fact, Dr. "T" (from Thailand) just returned to LA yesterday which is why this was "sprung on us" today and wasn't an option before. It's all in the timing... and God's plan... another God-incidence as Grandma K. would say.

So that's the scoop! There's a good deal of info on the NAM (nasoaveolar molding) device and Dr. Barry Grayson and Dr. Court Cutting at NYU Medical Center on the Internet. Please feel free to research any of this to learn more about it and see pictures of the device and how it works. You may see some familiar words and phrases that I've plagarized from Internet articles... don't tell my college professors!

Keep those prayers coming - they're obviously working!

Thank you all so much!
Kristin

Tuesday, January 25, 2005 4:08 PM EST

Good Afternoon!
Aunt Ashli here with... well... quite an update... I think all this praying and dancing "prayed" Allyson right OUT of surgery! Yes, you read correctly - there will NOT be any surgery tomorrow, or for quite some time for that matter. How about that for a roller coaster ride?

Kristin, Mark and Ally met with the TEAM of specialist at Children's Hospital (CHLA) in LA today. The doctors on her team are the orthodontic surgeons and specialists who will over see Ally's care along with the craniofacial and teledentistry docs. Dr. Yin is a part of this team and had just returned from NYC yesterday from conducting procedures and was not very knowledgeable of Allyson’s case, which is why this is NEW news. Dr. Yin, who has perfected the following method I am about to explain, Dr. Reinisch and the team, will be installing an appliance in Ally’s mouth this week, as opposed to surgery right now. The appliance is much like a retainer or head-gear, that will be the best for her overall look and function in the long run. The appliance called a Nasal Alveolar Molding creates a fake palate (roof of the mouth) and is held into the sides of her mouth and secured with tape on her face to stay in position. It causes her NO discomfort. The idea is that this will create a better look for Ally overall in the long run, helps aid her feeding now, and should make her have FEWER surgeries down road, and it also helps to close up her nose area over time. The “appliance” has to be removed for cleaning once a day and Kristin/Mark will take Ally to CHLA weekly for a check-up. The appliance will stay in for 3-4 months, then about 6 months after the “appliance has done what it is supposed to do” there will be the first surgery for the cleft lip. This is a newer method and approach as it is only done in NYC and CHLA. It is not “cutting edge” per se but definitely a newer approach – and proven. The end goal is to give Ally better feeding function now and a better look down the road… and fewer surgeries total! We like that part!

And out of the mouths of babes… When Kristin (holding Allyson) was waiting for admission at CHLA, a 4 year old girl came up to them and said “Oh look, I used to have a lip just like that and now I am all better… SEE!” And she flashed a huge smile at Kristin. Couldn’t have planned that better! :)

So that’s the word from the car as the gang drives back home from a long day in Los Angeles. I am sure Mommy Kristin or Mom/Terri/Teetay will post an update soon with additional details. And we all look forward to seeing Ally eat better, more comfortably, and get used to her special appliance!

Words can’t express how grateful we are for your continued thoughts and prayers – THANK YOU, THANK YOU, THANK YOU… and stay tuned!

Ashli

PS - Check out it out...
http://www.oc-j.com/mar02/Grayson.htm
http://www.cleftadvocate.org/parade.html

Tuesday, January 25, 2005 4:08 PM EST

Good Afternoon!

Aunt Ashli here with... well... quite an update... I think all this praying and dancing "prayed" Allyson right OUT of surgery! Yes, you read correctly - there will NOT be any surgery tomorrow, or for quite some time for that matter. How about that for a roller coaster ride?

Kristin, Mark and Ally met with the TEAM of specialist at Children's Hospital (CHLA) in LA today. The doctors on her team are the orthodontic surgeons and specialists who will over see Ally's care along with the craniofacial and teledentistry docs. Dr. Yin is a part of this team and had just returned from NYC yesterday from conducting procedures and was not very knowledgeable of Allyson’s case, which is why this is NEW news. Dr. Yin, who has perfected the following method I am about to explain, Dr. Reinisch and the team, will be installing an appliance in Ally’s mouth this week, as opposed to surgery right now. The appliance is much like a retainer or head-gear, that will be the best for her overall look and function in the long run. The appliance called a Nasal Alveolar Molding creates a fake palate (roof of the mouth) and is held into the sides of her mouth and secured with tape on her face to stay in position. It causes her NO discomfort. The idea is that this will create a better look for Ally overall in the long run, helps aid her feeding now, and should make her have FEWER surgeries down road, and it also helps to close up her nose area over time. The “appliance” has to be removed for cleaning once a day and Kristin/Mark will take Ally to CHLA weekly for a check-up. The appliance will stay in for 3-4 months, then about 6 months after the “appliance has done what it is supposed to do” there will be the first surgery for the cleft lip. This is a newer method and approach as it is only done in NYC and CHLA. It is not “cutting edge” per se but definitely a newer approach – and proven. The end goal is to give Ally better feeding function now and a better look down the road… and fewer surgeries total! We like that part!

And out of the mouths of babes… When Kristin (holding Allyson) was waiting for admission at CHLA, a 4 year old girl came up to them and said “Oh look, I used to have a lip just like that and now I am all better… SEE!” And she flashed a huge smile at Kristin. Couldn’t have planned that better! :)

So that’s the word from the car as the gang drives back home from a long day in Los Angeles. I am sure Mommy Kristin or Mom/Terri/Teetay will post an update soon with additional details. And we all look forward to seeing Ally eat better, more comfortably, and get used to her special appliance!

Words can’t express how grateful we are for your continued thoughts and prayers – THANK YOU, THANK YOU, THANK YOU… and stay tuned!

Ashli

PS - Check out it out... http://www.cleftadvocate.org/parade.html

Monday, January 24, 2005 10:56 AM CST

THE SURGERY IS A "GO"!!!! We will go to LA tomorrow for Allyson's pre-op appointment. The surgery will take place on Wednesday, January 26th. Time TBD. Dr. Reinisch will repair Allyson's lip and separate her ring and pinky fingers on her left hand. We are anxious and nervous and excited all at the same time... we are so thankful that our prayers and all of yours have been answered.

We're having Allyson's one-month old picture taken this afternoon - an appointment we had rescheduled from last week after she came down with her eye infection. Hope you enjoy the new pics we've posted. The next round will show Allyson post-op on Wednesday or Thursday.

Have a great day! More later...

Kristin

Sunday, January 23, 2005 8:22 PM CST

It's been another beautiful weekend here - hope those of you in the east aren't too FROZEN from your winter storm/blizzard that rolled into your neck of the woods over the weekend... we thought of you as we basked in our 74 degrees, sunshine, and blue skies...

We spent some quality time together as a family over the weekend. Grandma K. went to San Diego (via greyhound bus - how brave she is!) to visit some of her close friends. Dad/Geep/Jerry took to the great outdoors and "whipped up" his world famous brisket, ribs, and chicken. We all ventured out to the mall yesterday and ate lunch at Red Robin (Allyson LOVED her kids hamburger - ha ha!). I was a shopping fool armed with Gymboree gift certificates for the girls and Ann Taylor Loft gift certificates for myself. It was a fun day for all of us!

Sunday's activities included a trip to the local farmer's market at the Channel Islands harbor, watching the division play-off games (Yeah, Eagles! That's a shout-out for our newest family member-to-be, Morgan and Allyson's, Uncle Tommy), and taking Morgan and Allyson to the park. We really enjoyed our time together!

Geep will have to fly back to Virginia tomorrow and Grandma K. will return on the bus and stay for a few more days pending Allyson's surgery on Wednesday...

Now for the update on that... the last word from the scheduler (on Friday) was that it is "likely" that Allyson will be able to have her surgery on Wednesday at Children's Hospital Los Angeles. I was instructed to call the scheduler promptly at 8:30 a.m. Monday morning to find out for sure. If the surgery is a "go", we will have to take Allyson to the hospital for her Pre-Op appointment on Tuesday. Depending on the time of the surgery, we may spend Tuesday night in L.A. to avoid the traffic both Tuesday evening and Wednesday morning. Of course, we'll update you as soon as we know for sure.

Thank you, as always, for your thoughts and prayers. We are so blessed to have so many friends, family, and loved ones across the country in our corner.

Kristin

Thursday, January 20, 2005 10:43 PM CST

No new news here... we're still waiting to hear if Allyson will be able to have her surgery next Wednesday.

I've updated the pictures yet again... the redness around her eyes looks MUCH worse in the photos than it does in person, so I've posted some better shots. She's getting better and these pictures we took tonight should reflect that.

Allyson weighs 8 lbs, 3 1/2 oz. as of this morning - still gaining steadily thanks to our diligence in feeding her every three hours. Geep/Jerry will get his first turn tonight at midnight after he flies in from Virginia. Maybe he'll be the one to break Grandpa Kelso's bottle-feeding record!

Have a good night! Hope to have GOOD news sometime tomorrow!

Kristin

Wednesday, January 19, 2005 4:43PM CST

Hello! Here's the latest news from our California (and 80 degrees again!) homefront...

1. Allyson will NOT be having surgery this Friday, Jan. 21st. The insurance part was resolved, however, the pediatric anesthesiologist will NOT anesthetize Allyson at the surgical center. Due to her weight and age, he is not comfortable giving her anesthesia in a non-hospital facility. Apparently, the surgeon was not aware of this at the time he suggested performing her surgery at the surgical center. His scheduler is trying to "fit us in" at Children's Hospital next Wednesday, January 26th. She indicated that we had a 50/50 chance of Allyson having her surgery that day. We'll keep you posted...

2. Allyson had another doctor's visit this morning... this time with a pediatric opthamologist - her first visit with him. After a "fussy day" yesterday, we noticed that her eyes were crustier than normal and she wasn't opening them very much. She usually has a little "crust" as a reslt of the dryness associated with the ectodermal dysplasia part of her syndrome. By this morning, her eyes were stuck shut and had to be pryed open by us when we gave her the eye drops. After clearing away as much crust as I could with a warm washcloth, I smeared her eyelids and under eye area with vaseline to help keep it moist - the area around her eyes were also very red. When I called the opthamologist, he wanted to see her right away. She has an eye infection - nothing too serious - and he prescribed antibiotic drops for her. She's been less fussy today and has returned to her normal sleep patterns, for the most part. We'll give her the drops for five days (alongwith artificial tears we were already doing) and she'll have a follow-up appointment and full eye exam on January 28th.

3. We also visited the dentist again yesterday about her second tooth. The dentist examined her AND took an x-ray of her upper mouth. We were correct in our assumption that her tooth had broken off on Monday night. The x-ray showed no other teeth or parts of teeth that we needed to be concerned about... only tissue and gums, so we were pleased to hear that. Once again, there was no charge for the visit for Dr. Lindbergh's "youngest patient ever". She even mentioned that she'd like to observe Ally's surgery if the plastic surgeon would allow it. What a wonderful person that has come into our lives!

4. Mark also received news yesterday from the Navy about his head injury. The "powers that be" (Naval Aviation Medical Institute "NAMI") in Pensacola, FL, informed his flight surgeon that he would not be flying again for one year post-injury... no ifs, ands, or buts about it. Mark will first need to have a normal catscan in San Diego and then go to Pensacola for testing and evaluation. We're still not sure when this will happen. The head injury coordinator in San Diego suggested that Mark wait until he was feeling 100etter before he met with the Navy neurologist. If he doesn't pass his initial set of tests, he'll have to wait 6 months before he can be tested again, thus extending the process that much longer. Although, Mark was bummed about the "definite" year of being grounded, he's realizing that he needs to be here with Allyson, Morgan, and me and can also focus on other aspects of his job and career development that have been on the back-burner for awhile.

So, that's about all from here for now. My dad, Jerry/Geep/Taz, is arriving Thursday night. He planned his trip so he could help out with the surgery happening on Friday... he only considered cancelling his trip for a half a second when her surgery got postponed. When he weighed the options of staying in Virginia where it's freezing and snowing or coming here... the choice was easy! See you tomorrow night, Geep!

Have a good evening, everyone. Thank you, as always, for the wonderful posts in the guestbook and for all the cards, letters, and gifts that have been sent to the house. We are so appreciative of everything!

Kristin

Monday, January 17, 2005 12:24 AM CST

After a beautiful weekend of sunshine, the weather actually got BETTER today! We enjoyed summer-like temperatures - around 80 degrees - and even complained about being HOT in our short-sleeved shirts. I apologize to all you midwesterners and easterners if I'm rubbing it in a bit... Anyway, Teetay, Grandma K., Morgan, Allyson, and I ventured out to run some errands and had a "girls lunch out." Allyson was an angel and took her bottle and then slept the rest of the time. Morgan was a great big sister and ate her grilled cheese sandwich and smiley face french fries with enthusiasm! We all benefitted from "getting out" for a bit.

Mark went into work today to say farewell to many of his squadron buddies who are leaving on a six-month deployment this week. Mark's reflection on today (as taken from his guestbook entry) is as follows:

"Hi everyone, Daddy Mark here again!
I had a little tough day today. My squadronmates left for San Diego to get on the USS Carl Vinson for our deployment.
I said goodbye to my good friend Josh Reyher today. Josh was a groomsman at my wedding and we have been in the same squadron for about six years. We were roommates for two six month deployments in VAW-117. We deployed to the Persian Gulf in 1996-1997 onboard the USS Kitty Hawk and again to the Persian Gulf in 1998-1999 on the USS Carl Vinson. Those of you that know him know that Josh has been my greatest friend for about eleven years now. We trained together, did our first operational squadron tour together and are now doing our department head tours together. Josh broke his leg while we were up in Fallon, NV in August and I watched over him in the hospital after he had surgery. I drove him back to Fallon after he was released from the hospital. If this sounds like a buddy, it's nothing compared to what Josh has done for my family. He has taken care of us, been a surrogate "Uncle" to Morgan, fed Allyson from a bottle the last night he spent at our house, and has kept my spirits up when I felt like the world was crashing down on me.
I'm not sure if Josh will be able to check this website periodically as he deploys without me, but I ask that you all keep him and all my GoldenHawk squadronmates in your prayers. We are going out to do a tough job, but that's what we do and that's why I want to be out there."

We're hoping to get GOOD insurance info tomorrow morning... yes, there is still an "issue" surrounding Allyson's surgery on Friday. Apparently, our insurance is now requesting pictures of Allyson in order to determine if the surgery is medically necessary! It's unbelievable, I know... and Dr. Reinisch's staff is working on it. Of course, no one could be reached today because of the holiday, so we're hoping to have this all straightened out by tomorrow. More crossed fingers please!

On a positive note, Allyson now weighs 8 lbs., 1 oz. as of this morning. She's been eating like a champ and is now taking 100ml at almost all of her feedings. She also cut another TOOTH yesterday. Part of the tooth fell out (broke off??) this afternoon and caused her some pain and distress. She eventually calmed down and fell into a deep, exhaustion-induced sleep. We'll see the dentist again tomorrow and have the rest of the tooth removed.

As I close for tonight, I want to remember my Gran, as she would have turned 88 years old today. Although I know she's in a better place, and hopefully got to dance the foxtrot with Grandaddy, I wish I could have visited her one more time and spent one more birthday with her. Flying to Atlanta in mid-January had become an annual event for Morgan and I... we were planning to go again this year and it would have been the first time Gran would meet Allyson. I can picture her holding Allyson and singing to her in her sweet, raspy voice...giving her a bottle and bringing her up to her shoulder to burp her... we would have snapped pictures to go into Allyson's baby book and the entire family would have gathered around her... I'll have to keep reliving these made-up memories in my mind so that Allyson knows her G.G. Happy Birthday, Gran. I love you so much and you are so missed.

Good night.

Kristin



Saturday, January 15, 2005 9:17 AM CST

Good morning, everyone! The website policewoman has called me out, so I'm updating this journal first thing today... sorry, Holly, for slacking off!

We've had a productive week of appointments for both Mark and Allyson. Mark and I met with his flight surgeon on Wednesday and discussed the tests and treatments that the Navy docs would expect of him. First, he'll have to go to Balboa Naval Hospital in San Diego to see an ENT about the blood clot and any damage that it has caused to his ear. However, since his appointment on Wednesday, some (maybe all... we're not sure) of the blood clot has come out of his ear. The equivalent of two coffee bean sized clots flushed themselves out. Mark has felt some relief and less pain in his right ear, but we suspect there still may be a tear or rupture of "something" back there. We were also advised by the flight surgeon that Mark will need to see the aviation neurologist and undergo a series of neuro/psych tests in Pensacola, Florida. While there are neurologists in San Diego, the only AVIATION neurologists are in Pensacola. They will be the ultimate decision-makers as to when Mark will return to flight status. His flight surgeon felt confident that there was no permanent damage to his brain and that he would return to flight status... it's just a matter of WHEN. "Navy rules" state that Mark will be "grounded" for one year - however, these rules are not set in stone and he could be up flying sooner depending on what the docs say. So, for now, Mark will not join his squadron on deployment as we focus on getting his appointments in San Diego and Pensacola. He may join the squadron later this spring, even if he's NOT in a flying status, but that will depend on where we are with Allyson's surgeries and the Navy docs evaluations.

Allyson had her hands x-rayed on Thursday to determine how many bones are in each hand. It was quite an experience getting the x-rays taken. Imagine getting a three week old to hold her hands still and flat and with her fingers spread out long enough for the technician to snap the picture! And then do this again with the other hand! The Navy corpsman (all four of them who assisted) were extremely patient and gentle with little Allyson. Of course, she wasn't happy about all the "activity" and eventually screamed herself to sleep for a few minutes. We were able to tape her hands and fingers down to the x-ray film and snap the pictures. I was sweating and exhausted by the time we were done! Anyway, the x-ray showed that she DOES have three fingers on her left hand. Her ring and pinky fingers appear to be fused together, but now that we know there's a bone for each finger, Dr. Reinisch may separate them if he feels they will help the functionality of that hand. We'll keep you posted on that one!

After our visit to the clinic for x-rays, Teetay, Grandma, Allyson, and I went to the Navy Exchange to see my co-workers. It was wonderful seeing so many friends and being able to show off Allyson to them. Everyone said they missed me at work and that it felt like I'd already been gone six months (versus just one!) - I guess that means I'm a "valued employee." :-) I got the scoop on the latest gossip, who resigned and who was hired, and the frenzy that surrounds inventory preparation! Although it was nice talking to my friends for a little bit, I certainly don't miss the daily grind and I'm in no hurry to "be back." Thankfully, I had already decided (prior to Allyson being born) to take an extended leave of absence after my maternity leave and not return to work until September... once again, everything happens for a reason...

We're looking forward to a sunny weekend here in southern California! We "owe" Morgan a trip to the park (hopefully it's not still flooded!). Perhaps we'll take in a movie (has anyone seen Racing Stripes?) or venture up to the Santa Barbara zoo now that Hwy 101 has reopened following the tragedy in La Conchita. Hope you all have a great weekend as well.

Grandpa Kelso leaves tomorrow and heads back to North Carolina, so we'll have one less person on "Allyson duty." We'll certainly miss his abilities to feed Allyson in record time and to calm her after the 6pm feeding when she seems to be the fussiest. He's been a great support to all of us, and we appreciate his "hands on" parenting to Mark and grandparenting to Allyson over the past two and half weeks. THANK YOU! We love you lots!

Well, Holly, I hope I've made up for not posting over the past four days. I'll do better this week as we get the final details for Ally's surgery next week. Hope you all enjoy the new photos as well - the home page one was taken yesterday when Allyson had her first REAL bath! Oh, and she's up to 7 lbs, 14 oz. now - steadily gaining an ounce a day! Yeah, Ally!

Okay, now I'm really done... Teetay has made breakfast and it smells great, so I'm going to eat! Good bye and God Bless you all!

Kristin

Tuesday, January 11, 2005 10:06 PM CST

It's a GOOD NEWS day here in California! The rain has stopped for the moment and we actually saw the SUN today for the first time in 10 days.

We received confirmation from the surgical center this morning that they would accept our insurance. I'm pretty sure that means "we're in" and Allyson will have her first surgery on January 21st. We still need to find out the final out-of-pocket cost figure since the facility, anesthesiologist, and plastic surgeon all bill separately. We're excited and nervous about this first surgery happening so soon, but the doctor assured us that Allyson was healthy and strong enough to have it done. HOORAY #1!

Mark had an appointment with his civilian neurologist today. She reviewed his most recent catscan and saw that the contusion on his brain was much smaller. There's still a little swelling and small amount of blood, but she was pleased with the way he's healing. She discharged him from her care, so now he can start seeing his Navy docs and work towards resuming flying status. Mark has an appointment with his flight surgeon tomorrow. His ear is still bothering him due to the large blood clot that's pressing on his eardrum, so he'll most likely be referred to an ENT surgeon to take care of that. He's definitely feeling much better and was given the "okay" to DRINK and DRIVE (of course, NOT at the same time!) HOORAY #2!

I don't think I mentioned it before, but we learned from the plastic surgeon last week that Allyson has tiny neonatal teeth in the outer tips of her cleft lip. These teeth aren't a bother to her and because they're unnecessary teeth, they would be removed during surgery. However, one of the teeth broke through the skin on Saturday and she's had a little dangling fang for the past few days. It felt loose to us, but not so loose that we thought it would fall out. At the recommendation of the nurse at Children's Hospital, we contacted our dentist and asked her to take a look. Dr. Lindbergh asked us to come to her office right away. Ten minutes later after a little topical anesthetic and a quick cry, we were back home with a sleeping Allyson and her first "lost" tooth in a cute plastic "tooth case." We'll put the tooth under her pillow and see if the tooth fairy will visit tonight. I'll be sure to update her baby book with "cut first tooth" at 17 days old... "lost first tooth" at 20 days old. HOORAY #3!

We're celebrating our good news day with take-out from Roxbury's Deli and a bottle of wine. Thank you for all of those crossed (and cramped) fingers and for your continuing prayers. We're feeling them for sure!

Kristin

Monday, January 10, 2005 8:27 PM CST

As the cliche' goes... "no news is good news..." RIGHT?!?!?! We are still awaiting insurance approval for Allyson's surgery on the 21st. How frustrating it is to leave messages with half a dozen people and NOT get a call back. Keep your fingers crossed that we'll hear something tomorrow.

Allyson was visited by the home nurse this morning and now weighs in at 7 lbs, 10 ounces. She's steadily gaining an ounce a day. Go, Ally, Go!

Mark continues to feel better each day and had another catscan this morning. He will meet with the neurologist tomorrow for a reading of the CT scan and find out more about his prognosis.

Thanks for crossing all those fingers out there! I'm sure it will help! More news tomorrow, I hope...

Good night!
Kristin

Saturday, January 8, 2005

It's another rainy Saturday here in southern California... I apologize for not updating the website yesterday, but we didn't get the final confirmation about Allyson's surgery we were expecting on Friday. She is still "penciled in" for January 21st pending approval from our insurance company that they will pay to have the surgery done at the Beverly Hills Surgical Center. Hopefully, Monday will bring good news. For anyone who hasn't "been on" in a few days, you can read the journal entry from January 6th for more details about her surgeries.

For those of you who have read the guestbook, you know that my grandmother in Atlanta passed away yesterday afternoon. As we hoped and prayed, she did not suffer and went to God quickly after her fall on Thursday. "Gran" and "Grandaddy" are together again in heaven along with my paternal grandparents, "Nanny" and "Papo", and I'm sure they'll all be looking on and helping Allyson, their newest great grandchild, as she faces her surgeries down the road. I wish I was able to attend Gran's burial tomorrow, but under the circumstances, I felt I needed to stay here. Gran and I shared a special bond and had a special connection. She always talked about us both being Capricorns and how I could understand her "ways" better than anyone. To my family, please know that Mark, Morgan, Allyson, and I will be with you in spirit as you all celebrate Gran's LIFE tomorrow afternoon.

Mark seems to be feeling better over the last few days. We attended a squadron "hail and farewell" last night and enjoyed socializng with our Navy family. Thank you all for your kind words as we visited and "caught up" with everyone.

As always, we are so overwelmed by the response on this website. The outpouring of love and prayers is awesome. Thank you for being here for us as we face new challenges everyday.

Kristin

Thursday, January 6, 2005 11PM PST

What a day this has been! We met with Dr. Reinisch at Children's Hospital Los Angeles this afternoon. He is a world-reknowned plastic surgeon and he and his team spent close to three hours with us. Between the geneticist, case manager, financial counsellor, and himself, we are all A LOT smarter this evening. While we didn't learn much more about EEC Syndrome (thanks to the research we've done on our own and info that's been passed along to us by others), we did get confirmation from the geneticist that this was a spontaneous mutation of mine and Mark's genes - not inherited since this is the first occurrence of EEC Syndrome or any type of clefting on either side of our families. Morgan and her future children are not at risk nor are Ashli and Tom's future children nor Glenn and Merideth's future children. Allyson's future children, however, will have a 50hance of being born with EEC Syndrome.

We did get an idea of what lies ahead for Allyson. Her lip/nose surgery and ear tubes will be done first. The lip/nose surgery actually is a two-part surgery with the second part occuring one week to one month after the first. Both surgeries are done as an outpatient - amazing! There's not really an ideal weight or age - it can be done almost immediately as long as she's healthy. In fact, there's a possibility that Allyson MIGHT have her surgery in two weeks on January 21st. We have to change some things with our insurance -in short, switch from an HMO to PPO which will give us more options for doctors and treatment facilities. If we're able to get "our way" (i.e. "Plan A"), Allyson's surgery will be done at Dr. Reinisch's Surgical Clinic in Beverly Hills (yes, Allyson's already a movie star!) on January 21st. Even if we switch to the PPO, the surgical clinic may not be approved. "Plan B" would mean waiting until July to have her surgery which is the first opening Dr. Reinisch has at Children's Hospital. "Plan C" would mean having her surgery earlier (spring perhaps), but by another plastic surgeon other than Dr. Reinisch. We'll post again tomorrow to let you know which "plan" we'll take.

Allyson's palate surgery will be done around 10 months and/or 16-18 pounds. This surgery will be done as an inpatient and is more complicated than the lip/nose surgery. We saw some incredible before and after pictures of Dr. Reinisch's work. We were all moved by one particular picture of a little girl whose cleft looked very similar to Allyson's... the "after" picture was flawless and if we didn't know it already, we knew then that we had come to the right place and the right doctor.

Allyson will also have surgery on her feet as well, but probably not until after she's walking. Dr. Reinisch thought her balance would be fine and the surgery would be done to straighten out her toes (versus them lying on their sides), so that shoes will fit well. She may have surgery on her left hand - the one that looks like it has three fingers. An x-ray will be done to see if there's a bone and nerves for a third finger or if the small "nub" of a finger should be removed altogether. He felt confident, however, that her hands will be fully functional. In summation, Dr. Reinisch said he'd be caring for Allyson over the next eighteen years. He's a wonderful man and evidently, a phenomenal doctor, so that's fine with us!

After a very positive consultation, we all felt very at ease and well-informed about the road that lies ahead. Thank you to everyone who prayed and thought of us today - we definitely felt your support!

Before I close this journal entry, I need to ask you all to keep us in your prayers for yet another reason. We learned late this afternoon that my grandmother (Frances Grant, "Gran", my mom's mom) in Georgia had fallen and broken her hip today. Her health has been failing in the past month and she now also has pneumonia. Gran lives in an assisted living home and has been made comfortable in her bed. She has a living will and a DNR. A hospice nurse is caring for her and my Aunt Dale is by her side. They are giving her morphine for her pain. Please keep her in your thoughts and pray that she will not suffer for long and will be joining my grandaddy in heaven very soon.

Thank you again... with much love and appreciation...
Kristin

Wednesday, January 5, 2005 8 PM PST

Aunt Ashli’s newest favorite quote (for the day!)…

"I'm not afraid of storms, for I'm learning how to sail my ship."

From Terri/Mom/Teetay…

What a fabulous day this has been!! Kristin rec'd news this morning that Allyson is "in"...she will be seen by the specialists at Children's Hospital in LA tomorrow as her insurance was APPROVED!! We were very hopeful and our prayers have been answered as to 'where' she will receive the best care for all of her special needs. Other GOOD news is that Mark is improving and today he took on the challenge of feeding Allyson. She has to 'work into her own routine' sucking the bottle, but once she 'gets it'...wow...she's quite a "drinker" of her formula!!! We had to 'medicine dropper' her milk for several days, so to be back to a bottle with a special nipple and extra holes is a real godsend for us all. I am sure Allyson likes it better, too. Her mother, Kristin, helps enrich the formula with breast milk.

Allyson now weighs 7 lbs. 6 oz. as of this morning. Clint, the visiting nurse, told us we were doing something 'right' as she is gaining weight and prospering. About her "prospering"...she is strong, strong, strong, Not only did she cross her HEART shaped fingers and hands to get Children's Hospital, she turns her head side to side and is very interested in ALL the voices that surround her. At 3 AM this morning (my turn) she decided to be very active! When I walked upstairs to find a room with a DOOR (you know these California houses!) she simply gave up and went to sleep!

More and more of you are communicating via this website. I, along with the whole family, are continuously uplifted by all the words and prayers for Allyson. You must know that the power of words is so important to me. To know that Little Ashlynn in Texas is praying for Allyson makes my own heart burst open....and to know that there are friends from ALL OUR FAMILIES who have set up prayer groups, masses, and support for us all across this country just simply WARMS us. I cannot say it any stronger. WE DO FEEL YOUR PRESENCE and those are not idle words.

There are teachers in my school who are working to help me grade papers in my absence, and others working to ensure that everything runs smoothly while I'm away. I am forever in your debt. I just have no pay-backs...just my love and my gratitude. I work with the BEST people in the entire world....my friends and my support system. Thank you all.

And, to Geep, who is in South Carolina on business...."Who will make my pancakes?" - still exists. Morgan mentions the pancakes and YOU each day! We miss you but we know that YOU and your big heart are here with us.

Tomorrow we travel to LA...we should find out some interesting information from Children's Hosp. that will help us help Allyson to map our her future. We are all going except for Morgan. Morgan will go to school and Suzanna, her teacher from last year, will pick her up and care for her tomorrow night until we get back. We will update this page once we hear from the physicians there. I'm sure hoping an "In and Out" burger is in the forecast for tomorrow!!!

I love Aunt Ashli's quote about "we're just learning to sail the ship"....and you know what? We are pretty good at STAYING AFLOAT, so keep the prayers nodding in our direction. This is way too many words…. Good night all.
With love, "Teetay"

Monday, January 3, 2005, 4:20 PM PST

After another rainy night, the sun made an appearance just in time for Morgan and Allyson's dedication ceremony this morning. The ceremony was just perfect and we were delighted to be joined by so many friends from VAW-112 and the Navy Exchange. Allyson was a sleeping angel throughout the ceremony and Morgan put on her shy act, but felt "safe" in Teetay's arms. After the ceremony, Morgan had fun running around the chapel with the other kids from the squadron. We've added new pictures to the website for all to see. Thank you for all of your kind wishes on this special day. We are so appreciative of those who attended the ceremony as well.

Allyson was visted by the home nurse this morning. She now weighs 7lbs., 4oz. She had gained 3.5 ounces since Friday, so our strict feeding schedule and diligence in getting her to eat is working! Hooray! We're still using the medicine dropper to feed her, but we'll try to reintroduce the bottle over the next 24 hours. We'll keep you posted of course!

Have a wonderful evening...
Kristin

Sunday, January 2, 2005

Good afternoon from another RAINY day in Southern California! (What's up with that??) Aunt Ashli on journal duty today before Holly checks in with us ;) You'll have to read all the guest book entries to figure that one out! All is well here in the Kelso home! I arrived in last night from DC just in time for Ally's 12 AM feeding and took my first try at the medicine dropper feeding. It took us a while to get in our groove but once we got going, my Al-Pal and I did pretty well! Of course sitting up late chatting with MY big sister was also a treat :) (Well, someone had to show me what to do!). Teetay had the 3 AM and Grandma and Grandpa took 6 AM. They're all becoming pros so I was back at it for 9 AM and it was a little frustrating so we tried Ally back on the bottle for the first time in days only to find success back with the dropper. Grandpa Kelso had the special touch at 12 PM when he was on full Ally duty... why, you ask?? Because us bigger gals took off for the MALL! It was a special outing with Morgan, Mommy, Teetay, Grandma K. and me... lunch at Red Robin and a visit at our table with The Magic Man who made animal balloons and told goofy jokes. We all laughed a lot and it felt great -- As Lydia said, it was JUST what we needed :) We also went to a nice children's dress shop to check out flower girl dresses for Morgan and Jessica, who will be in my wedding this August. Morgan sure had an opinion about what she liked - PINK PINK PINK! Of course there's a baby size "formal" dress for little Ally to match. All these little diversions sure felt good for the ladies today!

As I write, Allyson is nuzzled in Grandma's arms and Daddy Mark naps upstairs, still nursing that aching head :( Allyson is SUCH a good baby and just nuzzles and sleeps and eats on cue. I am getting spoiled thinking there is such a thing as an “easy” baby! Next week is a whole slew of appointments with Ally's first visit to Children's in LA, Mark's check up, Kristin's two-week postpartum check-up, and Morgan's first dentist appointment. But before all that, we’ll kick off THIS week with both Morgan and Allyson's christening at Pt. Mugu on January 3rd. Many Navy friends will attend along with her family who is still here visiting. So think of us around 11 AM tomorrow as our little angel girls are being dedicated to God in their special ceremony.

We all hope you are enjoying this New Year's weekend and look forward to seeing you "in the guest book"! We are so grateful for ALL your support and love! THANK YOU!

As I sign off, my quote for the day...

"A baby will make love stronger, days shorter, nights longer, bankroll smaller, home happier, clothes shabbier, the past forgotten, and the future worth living for"
-Anonymous


Saturday, January 1, 2005

HAPPY NEW YEAR! Allyson has kicked off 2005 with a great start. She had another good night and got through all her feedings successfully. She slept well in between feedings and we all are a little more well rested today... with the exception of Teetay who had to call the police to report our neighbors being too loud at 2am! After five hours of hearing their stereo blaring and rattling our house, Teetay said "enough is enough."
Mark and I went to "Uncle" Josh Reyher's party for a little while and saw some of our VAW-112 friends. It was good for both of us to get out of the house and socialize.
We're excited to see Aunt Ashli again tonight... she should be arriving just in time for the midnight feeding. The rain has stopped here in southern California, so we're hoping to spend some time outdoors today - in between taking down the Christmas tree and decorations and watching bowl games! We wish you all a very HAPPY NEW YEAR!

Friday, December 31, 2004 8:00 AM CST

Good morning, Happy New Year's Eve and Happy Birthday to me! This is Kristin writing to update you on Allyson's first FULL day at home and second night. She saw her regular pediatrician yesterday. Her weight was stable - she had actually gained one ounce since leaving the hospital the day before. Everything else check out well. I had discovered during the day yesterday that she was "fighting" her bottle more with each feeding and had developed what looked like blisters in her mouth. We had noticed something similar while she was still in the NICU after the first few days on the bottle. At that time, we changed the position at which we inserted the bottle. The pediatrician confirmed that she had now developed "sucking blisters" in this new location. He said they were common in babies and did not require treatment. So, since noon yesterday, we've been feeding Allyson with a medicine dropper to insure that she'll continue to get adequate nutrition. The medicine dropper had been my "diagnosis" and he complimented me on my assessment. Yeah, Mommy! The pediatrician said the sucking blisters should heal on their own in a few days and we can resume bottle feeding.
The other part of the ped's visit was to get Allyson's referrals set-up for her her consulation at Children's Hospital Los Angeles. We may have hit a "glitch" in our plans as the pediatrician told me that our military insurance's (Tricare) contract for pediatric plastic surgery is with UCLA Medical Center, not at Children's Hosptial. He promise to do what he could to push Tricare to authorize her care at Children's, especially since she already has an appointment there, is preregistered, and the doctors are already aware of her case. The managed care office is closed until Monday, Jan. 3rd, so we have to wait until then to talk to them - the "decision makers". I am hopeful that we can still proceed with her appointment next week as planned, but we'll have to see...
The night feeding and sleeping schedule were much improved last night. I think we all got into our routine (Teetay, Grandma K., Allyson and me). Allyson had longer periods of sleep in between feedings and we all rested a litte better. I'm sure each night will improve as we all get into our groove.
Thank you all for your support and HAPPY NEW YEAR!

Thursday, December 30, 2004 10:17 AM EST

Good Morning! Allyson came HOME yesterday, December 29, 2004! Her trip home was uneventful except that there was the rarity of pouring RAIN in the skyways! We covered her little head with Morgan's purple umbrella so she wouldn't get wet. She has been the poster-child-baby today - eating on cue - snuggling on cue- and just being with us 'on cue'....Mark's parents arrived last night so Morgan and Allyson have been surrounded by grandparent-love today. (only Geep is missing since he had to go back to work - somebody has to!) There will be a visiting nurse coming to see Allyson every day or so to weigh her. Apparently, some babies with her syndrome lose weight right after they get home. (She’s a whopping 7lb.2oz. now!) We are going to BEAT those 'weight loss odds' as Grandma Kelso said this morning!!! We are taking turns on the night feedings so Kristin and Mark can get some rest. Teetay has the 3 A.M. so you might see a 'post' from her at that time ;) Morgan was rather subdued to see her sister this afternoon - but she did help change one diaper and she did hold the bottle for a second or two of the feeding. I think her "Santa loot" and "Dora" doll were pulling her away!!! Know that our hearts are full and grateful today. We are now hoping to get MARK well - he saw his doctor today and it appears that he will be under her care for another 6-8 weeks or so with another CAT scan Jan. 10th. Once he's better we will all feel better.

Allyson had a ok first NIGHT at home... Kristin, Teetay and Grandma Kelso got to experience the joys (ha!) of keeping Ally on her feeding schedule and awaking a sleeping baby to give her a bottle. It was quite a flurry of activity in the wee hours of the morning as she needs her bottle and then expected to go back to sleep, because she nearly falls asleep during her feeding - but then she's wide awake after her feeding...at 12 AM, 3 AM and 6 AM... but then she needs her artifical tear drops right after feeding, diaper change and all that regular stuff. Of course adjusting to her "gurgles" and "goos" in the night is new since we haven't known what is "normal" of her sleep patterns in the NICU. She spent much of the night between the arms of Teetay and Grandma K. and Mommy, too. We'll adjust and try some different things in the coming nights as we get into the groove!

As Helen Keller said...
"We could never learn to be brave and patient if there were only joy in the world."

Mark had a somewhat restless night (as did everyone, obviously!) and will continue to rest and get some sleep while his head continues to heal. He's still in a lot pain and needs his rest still until he heals. Morgan wanted to see Allyson first thing this morning when she awoke and takes an interest in her bottle feeding, etc. The she was off to school and very excited to see her friends!

Happy New Year everyone, and Happy 33rd Birthday to Mommy Kristin tomorrow!!!

Thank you for being part of our strength.

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Ally entered this world with some special and unique features. She has a bilateral cleft (cleft lip and cleft palate), along with some missing fingers and toes. Her skin is fair and thin, making all these features characteristic of one born with EEC Syndrome (ectrodactyly ectodermal dysplasia clefting syndrome - http://www.nfed.org/EEC.htm). Ally should be able to lead a normal, active life after many surgeries down the road. She is a bundle of joy with pretty blue eyes and fuzzy blonde hair. Proud parents, Kristin and Mark, and big sister, Morgan, can't wait to have her home! We appreciate your thoughts and prayers as Ally faces her long journey filled with strength, support and tons of love. We are also grateful for the love, support and encouragement extended to Kristin, Mark and Morgan as they embark on this long road together. Thank you for signing Ally's guest book and being a part of her special story.

Thursday, December 30, 2004 10:17 AM EST

Good Morning! Allyson came HOME yesterday, December 29, 2004! Her trip home was uneventful except that there was the rarity of pouring RAIN in the skyways! We covered her little head with Morgan's purple umbrella so she wouldn't get wet. She has been the poster-child-baby today - eating on cue - snuggling on cue- and just being with us 'on cue'....Mark's parents arrived last night so Morgan and Allyson have been surrounded by grandparent-love today. (only Geep is missing since he had to go back to work - somebody has to!) There will be a visiting nurse coming to see Allyson every day or so to weigh her. Apparently, some babies with her syndrome lose weight right after they get home. (She’s a whopping 7lb.2oz. now!) We are going to BEAT those 'weight loss odds' as Grandma Kelso said this morning!!! We are taking turns on the night feedings so Kristin and Mark can get some rest. I have 3 A.M. so you might see a 'post' from me at that time!! Morgan was rather subdued to see her sister this afternoon - but she did help change one diaper and she did hold the bottle for a second or two of the feeding. I think her "Santa loot" and "Dora" doll were pulling her away!!! Know that our hearts are full and grateful today. We are now hoping to get MARK well - he saw his doctor today and it appears that he will be under her care for another 6-8 weeks or so with another CAT scan Jan. 10th. Once he's better we will all feel better! Happy New Year everyone… And as Tiny Tim said: "And, God bless us everyone." Thank you for being part of our strength.

***************************

Ally entered this world with some special and unique features. She has a bilateral cleft (cleft lip and cleft palate), along with some missing fingers and toes. Her skin is fair and thin, making all these features characteristic of one born with EEC Syndrome (ectrodactyly ectodermal dysplasia clefting syndrome - http://www.nfed.org/EEC.htm). Ally should be able to lead a normal, active life after many surgeries down the road. She is a bundle of joy with pretty blue eyes and fuzzy blonde hair. Proud parents, Kristin and Mark, and big sister, Morgan, can't wait to have her home! We appreciate your thoughts and prayers as Ally faces her long journey filled with strength, support and tons of love. We are also grateful for the love, support and encouragement extended to Kristin, Mark and Morgan as they embark on this long road together. Thank you for signing Ally's guest book and being a part of her special story.

Friday, December 24, 2004 9:48 PM CST

Ally entered this world with some special and unique features. She has a bilateral cleft (cleft lip and cleft palate), along with some missing fingers and toes. Her skin is fair and thin, making all these features characteristic of one born with EEC Syndrome (ectrodactylly ectodermal dysplasia - clefting syndrome). Ally should be able to lead a normal, active life after many surgeries down the road. She is a bundle of joy with pretty blue eyes and fuzzy blonde hair. Proud parents, Kristin and Mark, and big sister, Morgan, can't wait to have her home! We appreciate your thoughts and prayers as Ally faces her long journey filled with strength, support and tons of love. We are also grateful for the love, support and encouragement extended to Kristin, Mark and Morgan as they embark on this long road together. Thank you for signing Ally's guest book and being a part of her special story.

Today is Monday, December 27th and Ally has her first appointment set at Children's Medical Center in Los Angeles on January 6th - her medical journey begins with a team of craniofacial and pediatric specialists who will evaluate her bilateral cleft and conduct some genetic testing. We are happy to announce she is eating very well from her bottle and is a very good, happy baby. We hope to have you home soon, Ally... WE LOVE YOU! xoxoxo :)

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