Thursday, January 8, 2004 11:03 PM CST

Jason's second week off was great as expected. It was nice just being home together. I especially appreciated Jason's help observing Lydia. It wasn't until Sunday night that we together were able to piece together a pattern in her symptoms. Lydia was really crying, which was satiated with food. After she ate though, she would immediately fall asleep, and then wake up fifteen minutes later sweating and trying to throw up. This cycle happened over and over. I called the gastroenterologist expecting him to be perplexed. I was shocked when he said that every symptom perfectly fit a diagnosis of dumping syndrome. It appears that Lydia's tummy is now emptying too quickly for her system to handle. We've gone from one end of the spectrum to the other! I have since been assured by the surgeon that this should resolve with time--that it's not likely TOO fast by normal standards, but still relatively much faster than Lydia is used to. Her body just doesn't recognize normal. :o) In the meantime, we have Lydia on continuous feeds. It's just like being on I.V. fluids in the hospital, except the fluid is going into her tummy. It's annoying having her connected to the pump with a leash ALL the time. It has helped tremendously though! One friend was sad that this would interfere with Lydia starting school. It didn't stop us! This is neither contagious nor acute. It's just "baggage". Her pump and I.V. pole travel. :o) We have a plan to work her down from 24 hour feed to 18 hour feeds over the next THREE weeks!?!? Seeing that this is going to last a while, I was able to get the ball rolling yesterday on a backpack style pump that won't be as bundlesome.

Lydia started school as planned on Tuesday. Friends helped with the little girls so I was able to spend the first three hours (out of five) with Lydia. It was time well invested. I was able to observe as well as help their learning curve with Lydia's equipment and ways. (Of course I had also typed up "Lydia's Reference Manual" and distributed it). During my time there I was able to visit with the therapists and hopefully smooth that transition a bit as well.

Lydia hasn't slept though the night since surgery. So, she was groggy the first day of school but still seemed to have fun. She got to sit in the teacher's lap and hit a big disk that made a computer play music and animation. Lydia was in the circle on the floor for music time when I left. With a teacher and two aids for a role of eight kids, she's sure to get lots of attention. Lydia even had some one on one time in the rocking chair with "Miss Shirley", an aid well on her way to being a dear friend. She sure knows the way into Lydia's heart. :o) Yesterday Lydia worked on feeling different textures with her hands as well as oral motor exercises. And she was only there for two hours since she had a doctor's appointment.

Getting up and out hasn't been quite as hard as I expected. I'm tired, but we already have a decent system down. It's even working out that the little ones are napping simultaneously for a couple of hours while Lydia is at school. When I realized this I was taken aback. Today would be the first chunk of time. What would I do with two hours to myself! Then I realized that dishes, straightening, laundry, supper preparation, and this journal entry would more than likely FILL it. :o) Maybe I'll have some days for other things. The house has actually been more under control since Christmas than it's been in a LONG time. It feels great and helps my morale.

I could continue writing about all the cute and fantastic things that Sophie and Amelia are doing, but I just told you my list and time's a ticking.

Continued Prayers and Blessings!

Allison

I have to add that we tried a little baby food with Lydia tonight for the first time in a month or so. Apparently having a tummy that empties is a good thing. The hungry girl scarped down an ounce and a half. She even cried when I stopped feeding her for a minute, looked to me and opened for the next bite! Wow! It'll take real constraint on my part to keep this slow for the sake of her tummy issues. It's so exciting! Also, tonight I walked into the playroom to the sound of Amelia and Sophie laughing with each other. What a fun night!

Sunday, December 28, 2003 7:17 PM CST

We've had a wonderful Christmas and look forward to enjoying the rest of Jason's break as well! As precious as the holiday activities and gatherings have been, the thought of being home as a family with a relatively clear schedule is luxurious. :o) Being HOME with the three girls is so easy compared to having them parceled out here and there. It's allowing for much family fun. We are sure enjoying these children!

A couple of weeks ago, I spent most of a day out with Lydia and Beth for doctor's appointments and shopping. It wasn't halfway into the day before I really missed my babies. Jason said I really must be the right person for this "job". As with most parents of medically involved children, I've been told often that I ought to go into the medical field due to my experience and grasp on my child's issues. I know it's meant to be a compliment, but I can’t imagine loving anything more than what I'm doing right now! God has given me such a big desire of my heart. I am in the career of my dreams!

I'll reign myself back from that tangent and get on with an update. Lydia is healing amazingly. Her surgery sights look great and seem far less tender. Meals are going great. Those ten doses of medication a day I mentioned are being held without negative consequence! We're not satisfied yet though. The day before Christmas, Lydia started getting quite grumpy. She's had periods of pitiful crying off and on since. They don't seem to be meal or tummy related. Sometimes cuddles or bouncing helps. Early one morning I broke out Lydia's old friend "Mr.Valium". After sleeping it off, Lydia was ALL smiles--more so than I've seen in a long time! Lydia wasn't just pleasant; she was excited about life. Lydia historically has had periods of neurological irritability. It always seemed to play out that extra seizure drugs were the only things that really satiated her crying. It therefore was concluded that something was going on in her brain even though we weren't seeing seizures. This is what this feels like. With Lydia it's always been much more the ART rather than the SCIENCE of medicine. It's trial and error. We are hoping that a few extra doses will "reset" her brain and she'll be back to a good neurological state. We have an arsenal of tools to try, but not her neurologist. He's out of town this week, so pray for wisdom on our part. That's the update on grumpy, now on to snuffy.

Sophie is doing great other than congestion. She is keeping us laughing. Sophie has been trying to put all the fallen needles back on the Christmas tree. She's also been trying to take things from her sisters. You could visibly see her thoughts yesterday as she approached the toy Amelia was playing with. Obviously the recent reprimand was echoing in her head, for she shook her head "no" as she peered at the toy, then exerted self-control and went on to another plaything. Sophie's picked up a couple more signs, although some days the language gets all mixed up. She's definitely communicating though. With all the time Jason's spent with the girls, he's noticed a consistent response from Sophie when one of the others is upset. She looks back and forth between Daddy and the doorway, waves one arm and really carries on! He is convinced that she's telling him to get Mama--she'll fix it. :o) Sophie's also been loving on her baby doll that she got for Christmas--and chewing on it's pacifier!

Amelia has been talking to her baby doll and smiling at her--as well as everyone else. Amelia is just so good-natured. The pediatrician noted her "bright eyes" at her recent well visit. Her therapist has also been thrilled with her happiest little client. Amelia's wonderful progress as of late includes integration of many of the abnormalities such as inappropriate reflexes. Now it's just catch up time, which this hard worker is glad to strive towards. Amelia will be getting extra help with the New Year. She's been approved by Early Intervention for Physical Therapy on top of her Occupational Therapy. We look forward to seeing Lydia's dear "Miss Cora" again.

Lydia's been getting some swallowing therapy at home. The rest of her therapies will hopefully resume shortly after she starts school. She's set to start on Jan 6th. Then again, we've yet to decide whether her tummy and her head will be ready or not. Of course as the day approaches, I'm having more mixed feelings about my baby being away from me. I guess that might somehow qualify as a normal mother emotion?!?! Well, normal or not, we certainly consider ourselves very blessed! What a BIG year it's been for our family: our third child, first walker, seizure-freedom (for TWO), larger house for our larger family. I could go on and on with the fun and the hard... I can't wait to see what next year will hold, I think!?!?

Merry Christmas (just a little late) and Happy New Year!

Allison

P.S. Christmas pictures in album!

Monday, December 22, 2003 9:17 PM CST

Lydia's home!!!

More later,
Allison

Sunday, December 21, 2003 11:15 AM CST

Moving forward. Last night Lydia started on an ounce of clear fluid every three hours. Slow but steady definitely seems to be the motto with this process. The physician was thrilled to hear that I'd be glad to share my mama's milk stash with Lydia. It'll be a gentle next step before her standard formula.

My parents arrived last night and Mom was amazed at Lydia. She said that Lydia looks so much more peaceful than when she saw her last a week ago. If this surgery does what it's supposed to, we are going to be able to cut out TEN doses of Lydia's medicines a day. I've been reveling in the implications--70 less syringes a week to fill and clean…. What a thought! That's about half of her daily drug regime!

Lydia certainly doesn’t care about that. Simpler things make her happy, one event in particular yesterday. To coin a few endearing family phrases, some bubbles in Lydia's britches led to major brown downtown that left a new child (and new blankets, sheets, clothes…). This was a big post-op accomplishment assuring that everything is cranking back into action. Lydia has been very comfortable since. In fact, she hasn't had any morphine in over 24 hours, and only occasional doses of Tylenol! Then again, Lydia has been desirous of more attention since she's been awake more. Rocking was fun for us both and when not rocking, I spent much of the day in her bed with her bouncing it. I told the nurse that for such an expensive, fancy bed, it ought to vibrate too, even if that meant requiring quarters! :o)

Back on the home front, Sophie and Amelia have had a lot of quality Daddy time! Even on the days when he was working, Jason picked the girls up from friends' houses on his way home in the afternoons. It really seems to have provided stability for them. They still give me a grand welcome, but there hasn't been any clinging or fussiness! Thank you Lord. It's all working out beautifully. During the days, Sophie's been really practicing walking, and seems to make her longest stretch of steps the encore before bedtime when she has the biggest audience. Last night she took EIGHT steps to her Nana. What fun! Amelia's being her sweet little self, then again I really looked at those legs last night, and they are almost as wide around as they are long. I guess little is a relative term. :o) We are still eager to get Lydia home, but I couldn't imagine easier terms for a Tripp girl hospitalization at this point in our lives. We're good!

It's times like these that it's easy to "REST in Our Father's arms". It's such a contrast to today's closing on Zach's page (www.caringbridge.org/ga/zach). Please keep Zach's family in your prayers as they are "CLINGING to Jesus" during such hard times.

Continued Prayers and Blessings!

Allison

Friday, December 19, 2003 8:20 PM CST

We discussed feeds, and the plan is to start them in the morning if tonight goes well. I feel like I'm being redundant!?!? Lydia did well with the medicine. Tonight's test is keeping the feeding tube shut. It has been open to drain except for short periods after the medicine doses. A nurse assured me today that the surgeon really picks up her pace once the feeds actually start. And think we thought we were headed in for a two-night stay. Yikes. The surgeon is actually taking the next two days off, signing feeds over to the PICU doctor. I'm thinking this means that Lydia will be in at least until Monday, even if all goes well.

My parents will be back in Macon tomorrow night and Jason is now off on Christmas break. These factors will certainly ease the juggling and allow Sophie and Amelia to stay at home with various family members. Everything is really working out much better than if we'd been able to have the surgery the date I wanted. God is so much bigger than we are! I'm glad He didn't let me have my way---this time. :o)

Going for another good night,
Allison

Thursday, December 18, 2003 8:46 PM CST

Lydia's continuing to do well and still no seizures. I had the pleasure of giving her the first dose of her "Mighty Felbatol" this evening. I forget that this drug we love so much is covered with red tape and limited FDA approval. To get around all that, "parents are giving patient a home medication". :o) Whatever it takes! The surgeon said that we could discuss starting feeds tomorrow if Lydia tolerates having this drug pass through her tummy alright.

I got a good nights sleep in my own bed last night thanks to Jason's mom. Both little girls even slept through the night for us! It amazed me how tired I still was when I woke up this morning. My brain has been affected! My ability to think clearly doesn't hold up well under such fatigue. :o) Not only have friends kept the girls for us, but also they've helped me figure out who, when and where. Hopefully tonight will be another restful one so tomorrow I will be able to pass for an educated woman (or at least a sober one!).

Peacefully heading to bed,
Allison

Wednesday, December 17, 2003 9:51 PM CST

Lydia had a good night and even better day. The stretches between doses of pain medication are consistently growing longer, and there have been NO SEIZURES! Thank you Lord! Lydia really looks good, which is amazing. Her chest is a little junky, requiring occasional suctioning to keep up her O2 levels. It's as if she's demanding just enough attention to stay in the PICU. :o) That's O.K. with us. We are among dear old friends. Everyone is looking out for their special patient and her family. We dropped by the unit last Friday after pre-op to let them know to expect us. Since they had some notice, they managed to reserve the "suite" for us (the only room with a shower)! From the hospital staff, to the dear friends who are caring for the babies, and more, we sure feel loved. God is sustaining us through His body.

As always, we continue to covet your prayers. The next specific request is for wisdom for the surgeon as she decides when to start using Lydia's tummy again. The timeline is a gray area. A certain amount of healing needs to have taken place first to avoid complications. That healing can't be confirmed visually though. We are eager to get home--safely.

Continued Prayers and Blessings,
Allison

Tuesday, December 16, 2003 7:09 PM CST

The surgery went well! Everything we were hoping for was accomplished and more. On the way into surgery we were thrown an unexpected curve. Contrary to the previous report, apparently Lydia's gastric emptying time was extremely delayed. This merited including the additional procedure in today's surgery. Ramifications include increased risk of post-op complications and the requirement of keeping Lydia's tummy COMPLETELY empty for a couple of days. As a result Lydia has skipped her first dose of Felbatol--her favorite anti-seizure drug. Her neurologist helped us devise a plan to increase Lydia's other anticonvulsant for the time being, in hopes of keeping things under control. It's a nervous time though.

The day was rather pleasant. We had a nice private room to wait in which allowed us to keep Amelia up there with us. We visited with family and a few visitors while waiting, waiting, and waiting. We kept getting updates that the surgery was going great, yet the planned 3 1/2 hour O.R. time stretched into 7! Although good, it was a long day and we are exhausted.

I've not slept well the past few nights, trying to figure out how to work all the factors of this larger family into the hospitalization plan. My mom needed to head back early to Florida (with our graces!). Jason's parents and several friends are helping. It just takes a lot of people in different places to make this happen. The added aspects of surgery will also likely double the length of stay required. We are now hoping to be home sometime over the weekend. Being home for Christmas will have quite sweetness to it!

All in all, the day went very well and we are thrilled to have Lydia on the road to recovery. Thank you for your continued thoughts and prayers. Specifically continue praying for seizure and pain control for Lydia, rest for all, and a smooth "juggling act" with Sophie and Amelia.

Allison

Monday, December 15, 2003 2:58 PM CST

Just a quick note--Lydia's surgery was moved to tomorrow morning at 7:40AM. We will still be at the Medical Center here in Macon. She is expected to be in surgery for 3-4 hours and then go straight to the PICU for at least a couple of nights. I think I spelled it out more in the last update, but basically we are calling this the "10,000 mile abdominal maintenance surgery". Actually Jason prefers "internal extreme make-over". :o) Most of these procedures are repeats for Lydia. Last time they were done, she did not come out of the surgery in good shape, but she also was very fragile going in. In contrast, Lydia is more stable than ever going into this one, so we are optimistic for an uneventful recovery.

As always, thanks for your thoughts and prayers. Specifically, we are praying that the stress of surgery will not upset the awesome seizure control that we've seen for the better part of a year now! I'll update frequently in the next few days.

Thanks again,
Allison

Oh, one more BIG thing: A couple has put a contract on our old house! Please pray that inspections and such go smoothly in the days ahead.

Tuesday, December 2, 2003 9:12 PM CST

We're back! Back from our Thanksgiving trip and back among the healthy. :o) Well, mostly. The girls did just restart with slightly stuffy noses, but we all feel good. The girls are sleeping pretty well, but I'm ready to start "sleeping through the night basic training"! They've lost their groove since the recent illness. I would've thought that the trip would have worn them out enough to jump-start the sleeping movement.

We had a great time. Traveling with three little ones is quite an adventure. The drive that mere adults can cover in about six hours took us nine and a half! Stops weren't running into the bathroom, a to-go order, and hitting the road again. They involved three diaper changes, tube feeding, nursing, big-girl food for Sophie and oh yeah, meeting the big people's needs too. :o) The girls were great travelers for the first eight hours, then the greek chorus broke loose! We were all glad to arrive in Mississippi at my grandparents' house.

It was a precious gathering of loved ones--family, old friends and even new friends. Many, who have been praying for our family since Lydia first got sick, came to meet the girls. We also had the privilege of spending time with Laura's family (my brother's fiancée). As we all gathered for the Thanksgiving meal, we realized that the table formerly known as the "kids' table" was going to need a new name. Eventually we were able to come up with the "under 30" table, and that name won't last long! :o) Times are a changing. The meal was everything a Thanksgiving meal should be--tasty and plentiful. The food and really every aspect of the stay were quite a group effort.

It's been a shock getting back home as we all got spoiled. We ate lots, and had soooo many eager people to love on and play with the girls. I think Lydia actually came back the most rotten. She has forgotten how to entertain herself, or even sit down NOT in a lap! Sophie was giddy to get back to her familiar playthings. And Amelia is just one content baby no matter where she is.

Since we've been home, Sophie has decided that she likes to walk. This is mostly while holding on to our hands, but she has actually taken a step a few times by herself (promptly followed by landing flat on her face!). It's very exciting! She wasn't interested in walking, even with help, just a couple of weeks ago. Sophie's been learning a bit of sign language too. She has "more" down and has starting doing "eat". It's fun to have her be able to communicate in ways other than fussing. We took her to the playground yesterday. She was frantically signing "more" halfway down the slide. :o) She also found her way to me while I was eating my French toast this morning and asked for some with her hands. I guess this is a good thing!?!?

Amelia is really enjoying playing with toys--reaching for things and bringing them to her mouth. She played in the "Johnny Jump-Up" last night and had a good time. Amelia has just started rolling over again. It had been a month or more since she last rolled over--who knows why. She's also going back and forth on solids. That first meal of carrots is still the record holder. Nothing else has been consumed with such vigor. We're working on it though. Her head control is quite steady until she gets excited. Then she wiggles everything, head included.

Lydia is in a holding pattern of sorts. We were gearing up in hopes of surgery this week. We wrapped up Milledgeville therapy and Mom is here to help, but the surgeon's office called as we were headed out of town to suggest a different date, December 15th. It is going to require quite a bit of schedule shifting, including 4 appointments for the girls such as Amelia's next EEG in Savannah. My Mom has also extended her stay. If we didn't take this date, the next possible date was mid January. We can't stand the thought of Lydia being uncomfortable for that long, so we took it.

This week was also long ago set as Lydia's first week at school, but again, it's not falling together quite as planned. The meeting that we are waiting on for her to start is next Wednesday. I want to spend the first couple of days in class with Lydia to help her teachers learn how to interpret "Lydia's language". We may do this next Thursday and Friday, and then give Lydia an extended Christmas break starting with surgery. :o)

I have to talk myself down from getting quite frustrated with the futility of all my recent efforts in orchestration. It's so much easier to applaud God's timing and Sovereignty when MY plans are playing out. :o) Pretty arrogant, huh!?!? The important stuff will all get done even if it's not according to my schedule. I kept thinking that things would calm down once Milledgeville therapy was over. I'm starting to wonder! Oh, I forgot to mention that Jason's mom did take Lydia to her gastric emptying test. It was normal (with the help of drugs)! This means that Lydia will not have to have one aspect of the surgery--the one that the surgeon was most cautious about at that.

We didn't make it to the wedding I mentioned last time. We hated to miss it but even more so grieved for the reason we stayed. We went to a funeral instead, to support a friend and co-worker of Jason's who lost her 29-year-old son to a quick battle with cancer. We have other dear friends the Mortons that I want to mention, as many of you "locals" know them. Johnny was my youth minister and later performed our wedding. Even more though, Johnny and his wife Carla have been tremendous support for us during the really rough times when we've struggled with being parents of sick children. Their son, Zach, is scheduled for possible heart surgery this week. I'm out of links at the bottom of the page, but Zach's web page address is just like Lydia's with "zach" instead of "lydiavail" (www.caringbridge.org/ga/zach). Although I haven't spent time with Zach in a long time, I used to baby-sit for him probably 13 years ago. I never dreamed then that Carla would some day baby-sit for my child. She kept Lydia many Sunday mornings, back when Lydia was very frail, so Jason and I could go to church. Asking you for prayers on their behalf is all I know to do for these precious people right now. They are in the midst of a big decision-making time.

The Morton family during this heavy time, our family during this piddly chaotic time and yours during whatever you are going through now--however big or small can only rest in peace by focusing on what a BIG and loving God we serve. I went to a Christmas dinner tonight. It reminded me of the "reason for this season". We have so much reason to be joyful. A loose but delightful take on 1 Corinthians 13 was printed up in the program. I really enjoyed and appreciated this piece at this time when Christmas events are cranking up. It's a little long and somewhat geared towards women/moms, but I'd like to copy it here as I wrap this up. It's late tonight, but I plan on updating pictures tomorrow.

Enjoy:

Christmas Love

If I decorate my house exquisitely with plaid bows
and fresh evergreens, strands of twinkling lights,
and shiny glass balls, but do not adorn my home
and heart with love for my family,
I am just another decorator.

If I slave away in the kitchen, baking dozens of
tantalizing cookies, cakes, pies, and other sundry
mouth-watering desserts, preparing gourmet meals
and arranging beautifully adorned tables to
impress yultide guests, but do not feast upon
His daily bread from Heaven,
I am just another cook.

If I work sacrificially at the soup kitchen, carol in
all the nursing homes, and give all the loose change
that I have to the annoying bell-ringer for the
Salvation Army at the local Wal-Mart,
but do not live Christmas year round,
it profits me nothing.

If I trim the perfect spruce with shimmering
angels and homemade crocheted snowflakes,
attend a plethora of holiday parties and community
events, and sing in the choir's seasonal cantata,
but do not focus on Christ,
I have missed the point.

Love stops the decorating
to hug the child.

Love sets aside the cooking
to serve the husband.

Love desires to be "Jesus"
in the midst of the maddening hustle and bustle.

Love is kind, even when checkout lines are long
and tempers short.

Love doesn't envy another's home that is dust free
nor the dining room table that boasts of
coordinated Christmas china and table linens.

Love doesn't yell at the kids,
even when justified.

Love is gentle, especially when tired
and stretched beyond the limits.

Love is longsuffering, even when my husband gives
me a chainsaw--with an extended 6 month
warranty for Christmas.

Love listens…
Love waits…
Love looks for opportunities to go the second mile…
unnoticed and unrewarded.

Love doesn't give only to those who are able
to give in return,
but rejoices in giving to those who can't give at all.

Love bears all things,
believes all things,
hopes all things,
endures all things.

Love never fails.

Microwaves will cease,
hair color will fade,
car keys will be lost.

But giving the gift of love will live on forever!

Continued Prayers and Blessings,
Allison

Sunday, November 16, 2003 12:25 AM CST

Grrrrr. Three out of five of us are running fevers, Jason, Lydia and myself. Sophie got hers out of the way last week hopefuly. Although, her never-ending runny nose is just that--NEVER-ENDING. Jason and I have been achy with chills and I've had a sore throat. Jason has also been dizzy. His sinuses are always just on the edge and this has pushed them over. Lydia has acted like she hasn't felt well for at least a week now, but this is the first fever. (As an aside, the last fever she had--several weeks ago, was significant and I didn't even think about it at the time. Lydia was running over 103F WITHOUT any seizure activity! That is quite an accomplishment. This is a comforting observation in light of her pending surgery. I'll get back to that later.) Now, Amelia is the only one that is merely stuffy. Then again, Amelia threw up last night. I'd like to explain it away. Maybe her tummy agreed with her tastebuds and just didn't prefer peaches.

Amelia has just started gobbling up solids. After playing with tiny tastes for several weeks, she has decided that she likes to eat with a spoon. Carrots were the persuasive force. She literally hadn't finished a teaspoon of anything UNTIL---- she inhaled two full jars of carrots at one sitting! It was fun to see.

Lydia has been showing preferences, even while not feeling good. Friday she had been really fussing. I had done everything I knew to, so after the babies went down for their naps, I just picked Lydia up. That was exactly what she wanted! I didn't get anything done on the house during that down time, but Lydia and I enjoyed our cuddling.

That was early Friday--when I had planned to catch up on dishes and laundry after a busy therapy week. By that afternoon, I felt crummy though. Neither has been touched since. Needless to say, the house is a wreck. Jason and I moved as little as possible yesterday. The girls have been sweet to their ailing parents, but boy does Sophie have energy!

Before all this broke loose, last week we met with a local surgeon to discuss Lydia. I had asked friends to pray for wisdom about where to have the surgery--here or Savannah. Even though Lydia has been so stable for so long, the stress of surgery on her body could easily rev-up the seizures again--in which case it would be nice to be with her neurologist in Savannah. One of my biggest concerns was her Felbatol, Lydia's "miracle" seizure drug. It doesn't come in an I.V. form, and last time she had a surgery like this, she couldn't have ANYTHING on her stomach for days. Holding this drug was a scary thought. Not only were we impressed with the surgeon's experience and comfort level with Lydia, but also we were relieved that she agreed to make an exception to protocol for the Felbatol. Not even a dose will have to be skipped. Whew!

So, it looks like we will be scheduling surgery here in Macon for the first week of December. We are hopeful that Lydia will come through this with flying colors, but we have consulted Dr.Pealman's vacation schedule in choosing a date. Our lovely neurologist will be in town and on call during the time following surgery--just in case. I'm so grateful! The thought of dragging all these babies to stay who knows where in Savannah for an indefinite period of time was daunting.

We are still waiting for one more diagnostic test to determine all the factors of Lydia's surgery, but on the SHORT end, the surgeon said that it could be merely a two-day hospital stay (in the PICU). This remaining test, a gastric emptying study, is supposed to happen in the morning, but we'll see. Lydia's g-tube (feeding tube) has migrated up as she's grown. It is now bumping into her ribs, so it will be relocated during surgery. The hernia will be repaired and the fundo will be redone if it doesn't resume shape after the hernia repair. The gastric emptying test is to determine if Lydia's food is still hanging around too long despite medications to speed things up. This can be surgically addresses at the same time if need be. Symptomatically it's so hard to determine what has been causing her stomach to be upset and induce the gagging/vomiting--hernia, fundo malfunction, delayed gastric emptying or a combination of the above. We are hoping that Lydia will not suffer so much gagging after the surgery, but the surgeon made sure we knew that there was no guarantee. She said that some neurologically compromised kids just gag, regardless.

These few weeks before surgery are packed with big plans. Jason, Amelia and I are going to an out of town wedding next weekend while the older two girls have sleep-overs. We are planning to load everyone up and head to Mississippi for a grand Thanksgiving with lots of family and friends. And I'd love to have the Christmas tree up even before we leave. :o) Ambitious huh? Again, we'll see. My Mom will arrive early this week and maybe we can get it done then.

Even with the yuckies going around here we are doing all right. As Jason put it, he thinks that the girls still had a pretty good time yesterday despite how we felt. At one point Sophie was just dying for a playmate, so Jason stretched out on the floor and let her climb over and over and over him. That was sufficient! :o) Jason's dad just called to take our lunch orders. He has been enlisted to provide more lively Sophie play this afternoon. Sophie's obviously still playing hard even though we can tell she's off--more sleeping, less eating and cutting SIX teeth! Both she and Amelia are teething and drooling like crazy. They are also growing, although the gap between them is shrinking! This week Amelia weighed 18lbs and Sophie just over 22lbs! They are also less than four inches apart in height. They are delightful to watch even from our "sick recliners". Lydia's watching with us, glad to be elevated above the activity herself!

I'll make sure and update when we have more details about surgery if not before.

Thanks for your continued thoughts and prayers. And just in case I don't update before then, "Happy Thanksgiving!" We are so thankful for our friends and prayer warriors!

Allison

***Edited later Sunday night to add Amelia and Sophie to the fever list. :o( But no seizures so far!

Saturday, November 1, 2003 2:42 PM CST

Happy Birthday to Sophie! It's hard to believe that this time last year we were parents of one, with no knowledge that our second precious child had been born and was waiting for us! Sophie has brought so much fun and balance to our lives. Two days from now will mark the anniversary of "the call" announcing our new addition. This call came, mere hours later we "said yes" and the next morning we went to meet our three-day-old little bundle. We held her for the first time on Nov. 4, MY birthday! This means that we were in South Carolina last Nov. 4th. The year before we were in Florida on my birthday, waiting for neurosurgery. And the year before that we were in the Atlanta hospital holding out for the virtually impossible--24 hours without a Lydia seizure. It actually looks like we will be home for my birthday this year! I told Jason that he was going to have a hard time matching last year's birthday present though! :o)

Last week we had a last minute early birthday gathering for Sophie. It was decided that we should celebrate while we had my extended family here. My parents (Nana and Papa) brought my maternal grandparents (Moms and Pops) to visit. It had been almost a year since Moms and Pops had seen the great-grandbabies! Boy had they changed (and multiplied). We all chipped in and managed to pull off a birthday party for Sophie with a guest list of regular "Sophie volunteers". We've had so much help with baby-sitting since we've started the long-distance therapy. Including family, we had 30 people here for the party on one day notice! Sophie had a BLAST. She dove into the cake and giggled at her captive audience. It was very moving to see so many gathered who care about (and care for) our baby! Other than her "fan club" Sophie seemed to most enjoy the pink lemonade. It was actually far more exciting to her than the cake and ice cream! I don't have birthday pictures yet, but will update the album with some other gems for now. We all had such a special time with family and friends.

More exciting news from this way, well at least from my family, is my brother's engagement. On the way back home from our house, my parents got to take part in the celebration just after Jeffrey proposed to his now fiancée, Laura. We are all getting excited about a summer wedding!

In the mean time, we are wondering if it will be summer before the girls shake these runny noses! They vary in intensity, and the fever is long gone, but the noses just won't clear up. Sophie's got it the worst right now, with very annoying coughing during the evening hours. She acts like she feels much better today, after Dr. Grandpa gave us permission to use a little cough syrup last night. Despite the coughing spells, the girls are all sleeping so much better. Even Amelia has finally come around to sleeping about 10 hours straight at night!

Despite the better nights, the Milledgeville drives are wearing on us. The girls are fairing fine with their play dates. I think they are actually enjoying all of the attention. The house, meals, and my general fatigue are suffering though. Lydia's speech therapist and I have agreed to shoot for three more weeks at this intensity. After that we plan to take Thanksgiving week off and hopefully Lydia can start school the following week. Once Lydia starts school, we plan to decrease the feeding therapy to twice a week and even at that, we are thinking that that could be home-based! What will I do with myself?!?!

I have pulled my smocking back out. It's such a great "mental health" activity for me. It is nice to have something to show for my time. As quickly as I can accomplish most of my tasks, they start over--bottoms are wet, tummies empty, clothes dirty, and the house--yick. :o) Yesterday it was all really piling up and I was overwhelmed. God gave me the encouragement I needed though. One friend came as scheduled to watch the little ones while I took Lydia to an appointment. A second friend showed up unexpectedly and proceeded to fold clothes, wash dishes, and clean syringes. All of this cleaning at my house took place while I was smocking in the waiting room at the hospital. (Therapy and doctor's offices are the main places I get to smock.) I really didn't mind at all that we had to wait a while!

We were at the hospital for an upper G.I. for Lydia. For the past couple of months, Lydia has been gagging and even throwing up more and more frequently. There are two issues here--that she has such an upset tummy, and that she is ABLE to throw up. Lydia had a nissen fundoplication in June of 2002. This surgery was to manage her reflux--and should have made her unable to throw up. It was effective up until a couple of months ago. Sure enough, the test confirmed that Lydia's fundo is no longer functioning properly. This is because of a stomach hernia. I will be talking with her gastroenterologist early next week about what this will mean, but we expect that Lydia will have to have surgery to correct the problem. As much as we hate the idea of Lydia having to have another uncomfortable procedure and hospitalization, it was somewhat of a relief to get a clear answer to her present problem. It's nice for once to know what the issue is and have a clear plan of action to address it. (I guess that last part is still assumption at this point, huh?)

In the meantime we've been slowing down Lydia's feeds and decreasing the volume of her daytime meals. Between that and an increase in one of her stomach meds, she is much more comfortable.

Other updates include:
~ Lydia and Amelia's B6 doses have been doubled in hopes of fostering more development.
~ Lydia is down to two rather than three seizure drugs.
~ DFCS is satisfied with our compliance with their requirements short of a psychological to be done on both Jason and myself. That frankly sounds like torture, but we are so ready to have this case closed.
~ We are finally listing the old house, which is empty and really needs to move--renters didn't stay long.
~ Jason called the auto/house insurance company about something this week and was shocked by what he learned. They claimed to have sent a letter back in July telling us that our agent had moved, so they had discontinued our policies. This is one of so many things going on that really feel like spiritual warfare. New car insurance was aquired immediately, but apparently house insurance is very expensive the first year after a lapse in coverage. That's an issue for next week!

And to end on particularly happy notes:
~ Amelia is receiving Occupational Therapy at home once a week. She's finally starting to be able to keep her head in line with her body when pulled to sit!
~ Lydia is all but rolling over all of the sudden!
~ Sophie has begun to let go and stand on her own for very brief periods!
~ Grandparents are baby-sitting tonight so Jason and I can go out to celebrate my birthday. I think we may even go to a movie! :o)

Continued prayers and blessings,
Allison

Monday, October 13, 2003 12:03 AM CDT

Lydia and Amelia had well-visits last week. Ironically, now they're sick. But I'll get back to that in a minute. :o) Both girls are growing great. Amelia is up to over 14 lb. which means that she's more than doubled her birth weight at a mere four months. (The goal is to double by six months.) She's early on another front too--her first tooth! I couldn't believe it, and the second is almost through. Amelia is also showing progress developmentally, but she's still not where she should be. Even her advances are not necessarily "correct". She is compensating for her deficiencies with her stronger muscles. For example, she can lift her head up while on her tummy, but she uses her legs (way up in the air) to accomplish it since her tummy and shoulders are so weak.

Amelia is set up to receive OT in Milledgeville for the next couple of weeks. Hopefully by then Amelia will be getting some kind of therapy at home. We are in the process of seeking home based therapy for Amelia through Early Intervention. This program is a source of government funding, which also means another layer of decision making. Dr. Pearlman and Dr. Anderson have expressed real concerns that we get started on therapy for Amelia now. The prescription doesn’t necessarily translate into services though. Please pray that God will give wisdom and compassion to those in the position to determine this. As much as we love the Milledgeville therapist, we don't plan on continuing to go to Milledgeville long term, and Dr. Anderson expressed that we are likely looking at years of therapy for Amelia. Also, I'm quickly seeing the advantages of having therapy at home, where the therapist can show me the best way to maximize our baby equipment and such. As much as I enjoy getting together with other mothers of normal children for play groups, they just aren't equipped to direct and inspire me as to what type of activities to incorporate to meet Lydia and Amelia's special needs. It feels so good to know that Lydia has many well-trained "advocates" (therapists) that are heavily involved in her life. Not only do they love on her while working with her but they teach us so much that wasn't in the "What to Expect" books. :o) Even though this is our "second time around" Amelia is her own special person, as different from Lydia as they are alike. The physicians concerns about Amelia have certainly put a burden on us to seek out the resources to give her the best opportunity to develop. She is exhibiting a variety of things that need to be addressed in hopes that they can be diverted from being mushrooming problems.

I've rattled on enough about that. Forgive me if I'm not very coherent. Between Amelia and Sophie, crying awaked me six times last night. And they aren't even the one that was running the fever. All three girls have been stuffy for several days, but last night Lydia spiked a temp over 103 F. Tylenol and Sudafed seem to have done the trick. She is groggy but cool today. Needless to say, we're at home. I'm canceling one day at a time. Tomorrow is supposed to include bible study and four therapy sessions (making up for Columbus Day)! Even if they remain without fevers, I'm not sure that their noses will be nursery quality. We'll see. Thankfully they all seem to feel fine (except for the little bit loopy Lydia).

Last week was a big week for Lydia's swallowing therapy. Three days in a row she drank a whole ounce! Of course it took twenty minutes and yes she was particular. She liked the tropical yogurt smoothie and the formula with cherry flavoring (plain vanilla wasn't acceptable!). :o) On top of that Lydia ate a Lay's potato chip! Lydia keeps her jaw extended so much of the time, but when offered her that chip, she promptly closed her lips around it and gingerly nibbled on it. She did this several times. Lydia definitely likes salty and tangy. She did well with more tastes of mustard this weekend too. What a diet huh?

Sophie's not too far behind Lydia. The child that would eat anything is displaying some definite preferences all of the sudden. Sophie's meals now consist of CHEESE and a taste of something else. She's going to turn into a mouse! Sophie does still love her water and milk. We're definitely O.K. in the calcium department. The other Sophie development is "lovin". Now, on command, Sophie will "love Amelia/ Lydia/ the baby doll". Sophie proudly leans her face in to touch the object of her affection. After she's done it she pulls back grinning and clapping! She knows how cute she's being. :o)

Amelia is smiling and cooing adorably. She doesn't like to share the stage though. Amelia requires very focused attention before she will perform. It just melts our hearts! They are all such sweet girls. Lydia is quite the conversationalist these days. My first hunch that she was feeling really bad yesterday was when I noticed that she was lying in the bed awake and silent. Jason and I were discussing how I get quiet, in a zone, when I'm really sick or birthing a baby. :o) I was encouraged to hear Lydia fussing this morning as she woke up.

All three are now napping. The house is actually quiet and it's cool enough to have some windows open! It's strange. I'm simply hearing the chirping of birds, the hum of the computer, and faint sounds of the children playing at the school across the street. In honor of this weather, we actually took a family walk in the neighborhood last week. It was the first time since Amelia was born. What a parade! Not only did we have the double stroller and Lydia's special needs stroller (affectionately dubbed the hummer b/c of it's size). The first few blocks we also had two of our now outdoor cats following us--howling with each step. :o) We walked past our associate minister's house and found his family on the front lawn to greet us on our second pass. They had noticed us go by--then again how could they have missed us! :o) We all enjoyed it and hope to venture out more often.

I need to hurry up and eat lunch before I start feeding children.

Have a wonderful week!

Allison

Friday, September 26, 2003 12:01 AM CDT

I feel like it's been a long time since the last entry about the girls, but at the same time, time is flying by around here. We are staying so busy. I hope to type this quickly so I can get some housework done while Sophie is napping! The speech therapist is staying late on Wednesday's so Jason can take Lydia one day a week. It is making such a difference. Even though Sophie and Amelia are both doing great with all of their "play dates", I didn't like them going four days in a row without naps in their own beds! The volunteers are still holding strong, helping make this a fun time for the little ones. Sophie even had a special outing this week. The same family that kept her overnight when we were in Savannah last, had her Tuesday. The six-year-old, Mary Madison, was sharing at supper the night before that her friend had taken his baby brother for show and tell the week before. She had her mom call to ask if she could take Sophie as her show and tell! Sophie is such a ham, I'm sure she enjoyed being the center of such attention. I was told that she even blew kisses to everyone! :o)

Amelia has some tricks of her own. Despite it being hard for her, she loves to work on things like head control. She is actually in the exersaucer now. Lydia protested so to any type of "therapy" activity at this age. It is such a blessing that Amelia enjoys her muscle building activities! Amelia started Physical Therapy yesterday in Milledgeville. It wasn't very productive, so I'm trying to decide whether to stick it out with this therapist or switch over to Occupational Therapy instead for her. Lydia has loved the Occupational Therapist. It's been nice to have a fresh view and new ideas to implement. Connie has identified many of Lydia's movements as infant reflexes that should have gone away by now. Identifying them as such gives us a direction and hope to help Lydia overcome them so she can move her arms and legs more purposefully. It's exciting. Connie has discovered that Lydia loves to have raspberries blown on her bear feet! Boy does Lydia react. Lydia and Connie are having a great time getting to know each other. We are increasing OT to twice a week, and all are looking forward to this.

Speech Therapy is also going well. Lydia took her first sips out of a cup last week and she did very well with it! She also successfully ate A Cheerio. :o) The second one was chewed up just fine, but then Lydia got mental on us and went into a gagging fit. She's doing really well with swallowing, if only we could convince her that it's a good thing to have stuff in her mouth!!! Lydia's definitely showing preferences. For instance, the therapist ran out of lemon pudding last week so we tried a few other things--chocolate pudding, butterscotch pudding, and even Jell-O. Lydia wouldn't have anything to do with any of them. I reminded Theresa that Lydia used to love Tapioca. Sure enough, the next day when presented with her old favorite, Lydia lapped it up. She's not even giving us such a hard time about the first bite anymore, as long as it's something she LIKES. :o) She's a mess for sure!

Our house is looking a lot better after my mom was here for a week and a half. We are all trying to recover this week. Whenever I have a built-in all-day helper, I go into overdrive and try to accomplish a lot. Many boxes were unpacked. Amelia's room got painted and we moved her into her big crib. Winter clothes for the girls were sorted and put away. And the list goes on. Just getting through the week is an accomplishment in itself though. OH, I almost forgot, we also got the girls pictures taken! It has been longer than I care to admit since I've done that. It took Mom, a friend and me, but we did it. They showed up one morning last week and I had the last baby in the tub and three dresses on the ironing board. I divvied up the chores and we quickly got everyone in the car and to the mall. Of course this was an impromptu thing (no appointment), but we still managed to get in at only the second place! We were able to get pictures taken of all three individually and even a great picture of the three TOGETHER! Afterwards, I had just enough time to drop all but Lydia off at home before heading off to Milledgeville! I am so excited about the pictures. With as much as we have going on, some things do fall behind, and professional pictures of the girls have certainly been one of those things.

Next week alone between Lydia and Amelia, our schedule includes eight therapy sessions in Milledgeville, one meeting to get Amelia into Early Intervention (so she can start getting therapy at home), two well visits to the pediatrician, and an appointment to get Lydia's new ankle braces fitted (the others weren't fitting right, and were the wrong design--we don't want our braces to clash with our cute clothes now!?!?!). And for each of those things I have arranged childcare for at least Sophie, some for Amelia too. Its nuts, but I keep reminding myself that it's just for a season. As I registered Amelia at the hospital yesterday for her therapy, I was asked if I worked. I knew what was really being asked, but couldn't that question be phrased differently? :o)

And I forgot to add my bible study to that list. I'm not getting to spend as much time as I'd like preparing each week, but I am so glad that I am able to go. We are studying the book of Philippians. I've done studies on this book before years ago, but don't remember being that blown over by them. I have a very different perspective at this point in my life as I read Paul's writings about the PRIVILIGE of suffering for Christ and his joy in his struggles. Although our struggles aren't in prison for preaching the gospel, if He is glorified by how we weather them, then it is suffering for Him--a much higher purpose that we are all called to as Christians.

Another Philippians theme that hit home is the importance of having "partners in the gospel". God is glorified when we help each other along our Christian journeys. We have been such recipients of this! Just this week, three different sisters in Christ have kept Sophie. Another delivered an affidavit from our DFCS attorney for me. Grandma kept all the girls while I went to the grocery store and will pick up drugs on her way home today. We ate out last night with grandparents, a feat that we don't attempt alone! My breakfast on the run has been muffins from my freezer made by another friend. Yesterday, a friend dropped in at just the right time and helped me load all of the girls into the car. And the week isn't even over yet! :o) Just last week one of my college roommates came in from out of town for a visit. Tricia and I did have some time to catch-up and meet each other’s children, but she also worked her tail off, helping my mom with the little girls while Lydia and I were at therapy, cleaning my house, and running errands with me. It's humbling. God is so good to us through so many willing vessels.

Last weekend, Jason and I were able to serve as weekend managers at the Ronald McDonald house. We would have been little use to the families there if we had had all of the girls with us. But between my mom and Jason's parents, we traded off and mostly had only one baby at a time at the house with us. This allowed precious time for us to share the burdens of other parents who are going through painful times. The girls also enjoyed more individual attention than usual. Friday night, we had a good time visiting with the other volunteers, a local hockey player and his wife. While I was helping a family check-in, Lydia and Bobby "danced" up and down the hallway, having a blast. Jason's highlight of the weekend was witnessing the thirty-plus biker group drop off their pop tabs to the house. Amelia wasn't even too startled by the chorus of rumbling bikes. :o) Sophie made friends with another "little big sister" at the house. Sophie also had quite a time in the house's playroom. It was a nice change of pace, and a chance to be on the giving end of the partnership for once. During a future season of our life, I hope that we can do it more often.

Thank you for your continued support. Your prayers are also such a sustaining power. I know that they have meant a lot to the Gaskins family as well. I want to thank those of you that have also been lifting them up and visiting his page. If you haven't had a chance to visit it yet, Jay's page is linked at the bottom of this page. Jay is doing well but he and his family have a long road ahead of them. I am ever thankful that they, like us and like you, are not walking their journey alone. "[Our] God will meet all your needs according to his glorious riches in Christ Jesus. To our God and Father be glory for ever and ever. Amen." Phil 4:19-20.

Have a blessed week!

Allison

(New Pics!)

Saturday, September 20, 2003 11:54 AM CDT

See the bottom of the page for a link to Jay's new webpage. His MRI was clear, but since the tumor was malignant, further treatment will have to follow. Jay is recovering beautifully from surgery. Thank you for your past and continued prayers for Jay and his family.

I'll resume updating about Lydia and our family when I get a chance. We are all doing well.

Continued prayers and blessings,
Allison

(I put Jay's link in Connor's place, but you can still get to Connor's page through Raef's.)

Friday, September 19, 2003 6:15 AM CDT

(Lydia is presently sharing her web page and GUEST BOOK with our friend Jay. See journal history for further explanation.)

Later last night, Dr. Troup was able to report additional EXCITING news. The plan was to keep Jay still and sleeping for the night, but they were having to accomplish this with additional sedation. Jay was ready to boogie before they even got him to his room! He was moving both arms and legs and trying to put the breathing machine out of a job. He wanted to do his own breathing, thank you! It is balm to everyone's heart to see him fighting and remaining so strong! Thank you Lord and thank you Jay.

Today Jay is scheduled for a MRI to confirm that the entire tumor has been removed. Please pray that it will be clear. Also include Cindy's unborn baby in your prayers. Cindy is 32 weeks pregnant (due Nov 11). She's holding up well, but I clearly remember how exhausting that last trimester is even without this kind of stress level. I am praying for a continued healthy and safe pregnancy and God's perfect timing for this new arrival.

Allison

Thursday, September 18, 2003 9:23 PM CDT

(If you missed the last entry, Lydia is presently sharing her web page with our friend Jay. See journal history for further explanation.)

Cindy asked that I pass on this update: After eight hours of surgery today, the neurosurgeon was able to report that all visible tumor has been successfully removed. Jay is stable. He will be carefully watched for the next couple of days for any complications related to the surgery. Please pray that everyone will have a good night's sleep tonight and that Jay will not have any complications.

I know that your prayers and support are appreciated. Thank you for your continued prayers and notes in the guest book for this precious family.

Allison

Wednesday, September 17, 2003 10:17 PM CDT

Please be praying for Jay Gaskins and his family. He is a two-year old buddy of ours, scheduled for neurosurgery at 10:00 tomorrow morning. Just yesterday a lemon-sized mass was discovered at the base of his brain. Jay's mom, Cindy, plans on getting a web page set up for him when she gets a chance. I'll put a link at the bottom when it's up and running. In the meantime, feel free to leave them notes in Lydia's guest book. I'll make sure they get them.

Thank you for your prayers!
Allison

Monday, September 15, 2003 9:34 PM CDT

I just updated this weekend, but I wanted to add a few things. First of all, Jeffrey (my brother) has arrived back in the states and is expected "home" tomorrow! We are thankful to have him back from his first deployment. Also, I forgot to mention that Lydia's birthday is Wednesday! In honor of HER week I updated the pictures with all Lydia pics. It was an easy decision as she's been making so many good ones lately.

Have a blessed week!
Allison

Friday, September 12, 2003 11:04 PM CDT

Lydia's new therapy is going great. A recent swallow study showed that she is swallowing pureed textures safely (none of it ends up in her lungs--a good thing). This means that we are incorporating oral feedings into our days. Lydia is regularly eating about 2Tbsp of food per meal along with her tube feeds! We are trying different baby foods, or anything else that texture to find tastes that tempt her. It's been a long time since Lydia has had much in her mouth, and she's a little freaked out by it. The first spoonful is typically rough, but she's warming up to the whole idea. Of all things, I think she's been the most receptive to a taste of mustard! :o) Have I ever pointed out that Lydia's not very typical!?!? She's most open to smooth things that are warm or room temp. Ice cream is pure torture! Anyway, the trips to therapy have been well worth it, and we plan on continuing for a while. We will keep going as long as Lydia's showing improvement. As well as increased volume, we will try to work towards thinner "foods/drinks" in the future. Isn't it counter-intuitive that liquids are the most difficult to swallow? While we are going to Milledgeville we are going to try to make the most of our trips.

Lydia's birthday is next week! This means that she will graduate out of the Early Intervention program that has provided her therapies to this point. There will be a lag in therapies while we are waiting for the school processing to be completed. As a solution, we've decided to try the physical and occupational therapists that work at the same hospital where we are four days a week anyway. Everyone is eager to help us work it out. Lydia doesn't eat the whole hour of vitalstim therapy anyway, so we plan on leaving the electrodes on and overlapping the last half hour of electrical stimulation with the first half hour of other therapies a couple of days a week. In other words, Lydia will accomplish 2 hours of therapy in 1 1/2 hours. Efficient, huh? If that doesn't have you confused a little try this. On Tuesdays, our plan is to start Lydia's hour of swallowing therapy at 12:30, then at 1:00 also get Lydia's OT while Amelia's getting PT. A three-ring circus for sure.

O.K., that was a lame transition, but my humors a little dry right now. Yes, I said Amelia. While at Lydia's recent Savannah appointments, Dr.Pearlman and Dr.Adams checked out Amelia. Dr.Pearlman was certainly glad to hear that we've not been seeing any seizures, but he didn't like how she looked. He said that Amelia's muscle tone is low (weak muscles) and that her development is not age appropriate. As he phrased it, "we're not out of the woods yet with Amelia". She's progressing developmentally, but not at a normal rate. He recommended starting PT and we made an appointment for a follow-up EEG and appointment in three months. Needless to say, I've been struggling with this as I've been trying to get around to writing an update. With Lydia, for such a long time we were convinced that the seizures and seizure drugs were the only things holding her back. We fought tirelessly to reduce both, cyclical battles that would never be won simultaneously. Yet, with Amelia, we have the seizures gone and NO sedating drugs. So what's the deal? Why is she not developing? Dr.Adams was a little more ambiguous, observing inconsistent tracking that COULD still be barely within the appropriate developmental age. She is still concerned though and wants a follow-up at the same time as Pearlman's.

Last weekend, I did more research on B6 deficient seizure disorders (the ASSUMED diagnosis at this point). The findings were very disheartening. I must have been reading selectively when I read so much of the same information back when Amelia's troubles started. I somehow had the impression that once daily B6 was added, a normal prognosis was achieved. Many sources do not indicate this though. Of course, this is a rare issue, and there is somewhat of a range of outcomes. We certainly want to remain optimistic, yet the grief and fear is very real. Here we are again, with many unanswered questions about our baby's future. Amelia's doing so much better than Lydia was at this age. We wanted to believe that that would mean she would "have it easier". And surely she does, but it still stinks to think about therapy and having to work hard to achieve milestones. Sophie progresses so effortlessly! God knows what lies ahead for Amelia, and He'll supply the strength and support to carry us through it. It's a challenge to give the future to Him rather than trying to presume and worry about it ourselves though. We certainly need to conserve our resources for today and keep our focus on Him rather than tomorrow. After spending all day last Friday on the phone trying to figure out insurance benefits for Amelia's therapy and the next step for DFCS closure, I was on empty. God met me where I was.

He continues to send us encouragement in so many ways, as if little reminders that He's sill very much in charge and orchestrating even the details in our lives. On our way to therapy Monday, I went by the pediatrician's office to drop off some of Lydia's blood for labs. I planned to call the nurse when I got there and ask her to run out to the van and get it from me. I certainly didn't want to have to get Lydia and Amelia out and drag them through the sea of sick kiddies if I didn't have to. I didn't plan on getting the nurse's VOICE-MAIL though. Grrrrr. Amelia was letting me know loudly from the back that she wanted to nurse before our long treck began, so we did that as I sat there trying to figure out my options and praying for help for this mundane, silly, little inconvenience. Just then a good friend of our walked out of the office. I eagerly enlisted her help to keep an eye on the girls why I ran in. It meant so much to see God provide yet again. I needed that reminder. We all need God's provision, for our next breath even. When you're in overwhelming circumstances like ours, you aren't tempted to believe the delusion that self-sufficiency is possible.

We are depending on so many. For our nine or so trips to therapy so far, I think seven different people have kept one or both of the little girls (and only two were grandmas)! It is humbling and touching. My mom is here now for a couple of weeks. She was part of the small army that helped me accomplish getting window treatments on my kitchen windows today. (Friday is our day off!) One helped me sew while Mom and two other "drop-ins" took turns with the girls. I could never have planned it so well. It feels so good to get something on my wish list accomplished like this. I know it's not a very important thing, but it certainly makes my days a bit brighter as I enjoy the product. I also got a chance to go to breakfast with a friend before the sewing began. And then Jason and I went to a party tonight! It was a much-needed "Mommy day".

I diverged a bit. Back to the Savannah update. Lydia is doing miraculously well. She hasn't had a prolonged seizure requiring Diastat (rectal Valium) in over a year! She used to frequently have several weekly if not daily. We also have not needed to treat neurological irritability in a long time. In fact, we've not seen even any short seizures in months. Dr.Pearlman just shook his head in disbelief. He never thought we'd get to this point. The seizure control has been since adding Felbatol last summer. So, He wants to try to reduce some of the other sedating drugs. Lydia's brightening so much. In theory less drugs could allow even more of Lydia "to come out". Please pray for wisdom in this area, for which drugs at which rates to reduce. We all act with some hesitancy in fear of triggering more uncontrollable seizures. But she's done SO well for SO long and she's on SO many drugs! We have to try. The other noteworthy tidbit from the trip is Amelia's amazing come around in the car seat. Both to Savannah and Milledgeville, Amelia has been doing GREAT. Thank you for the prayers. There is no other explanation for the rapid change. I still wouldn't say that Amelia likes being in the car seat. When the car stops she usually cries to get out. But she's slept more in route the past two weeks than she has in her first three months! What a blessing! Again, God's timing was perfect.

Sophie is also happy as usual. I like to think that getting volunteers to keep her has been fairly easy because of her extraordinarily winning personality. (Yes, a proud mom speaking.) She actually spent the night with friends while we were in Savannah. When I called to check on her I was told that they wanted to keep her! :o) She is a good baby. They all are good babies. We are blessed with three sweet girls and so much more. Thanks for hanging in here with us. I'll continue to update, but I may not be able to keep up weekly as I've tried to do in the past. We are just so busy! I can't imagine a LAZY day. Certainly it will come, years from now, …

Continued prayers and blessings,
Allison

Wednesday, August 27, 2003 10:42 AM CDT

Just when I was "settling in" to our new routine, a few twists and turns unfolded. They are good things, but wow. First of all Sophie's crawling! Such fun, such work. We never had to babyproof with Lydia. Those days are gone, in the blink of an eye. Less than two weeks ago it was so different!

Secondly, we have Lydia in a new form of speech therapy as of this week. It is called vitalstim therapy (www.vitalstim.com). Electrodes are placed under Lydia's chin that electronically stimulate the muscles involved in swallowing. While Lydia is "hooked up" her therapist swabs Lydia's mouth with candy to also encourage swallowing. This is a relatively new treatment, which has a wonderful success rate in restoring swallow function, and therefore allowing patients to eat again by mouth. It typically takes two to fifteen weeks. What's the catch? We have to drive to Milledgeville four days a week for an hour. So far, I've been able to arrange leaving Sophie and Amelia with friends while Lydia and I travel. I leave our house at 10:30AM and return around 3:00PM! Milledgeville is just under an hour away, but situating the girls takes some time… Needless to say, we ate out last night! :o)

I was really dreading the drive down a long hwy. with six to two lanes, 55-35mph speed limits and quite a few traffic lights. It's strangely refreshing to have such a stretch of time without whining or crying though! The radio doesn't pick up my choice station on that stretch of road, so I need to get some CDs in the car and I'll be set. Better yet, maybe I can even find some books on tape. We'll make the best of it. We are praying that it work thoroughly and quickly. Jason's particularly intent on the quickly part as he will be glad when we aren't on the road so much.

So far we've been impressed. Monday the first time the device was turned on we could audibly hear Lydia swallow immediately. Lydia actually seemed to enjoy it. Supposedly it kind of tickles, like ants walking on you (not biting). She got fussy today until we stepped up the entertainment level. When we pulled out the vibrating toys, more frequent candy tastes, a weighted blanket, and lots of direct conversation, Lydia was perfectly content. Her range of emotions that she is displaying is amazing. The removal of the tape that was holding on the electrodes evoked sobbing from Lydia. I couldn't believe what a dramatic response she had to such a relatively little thing. I had been concerned earlier in the week that she's been whining some, assuming that she must have an infection or something "big". Now, I'm about ready to conclude that she's just coming out of her fog some. She seems to be eager to let us know if it's just time to be held or moved. I'm also seeing very bright happy expressions when Lydia does get the desired attention. It looks like we may be getting a third vocal baby on our hands! Lydia is voicing her opinions like her sisters do oh so well! It's exciting to see.

Amelia actually slept 8 1/2 hours last night! It was wonderful. We are eager for that to be the norm rather than the exception. Surely it won't be too much longer. The other thing we're eager to see resolved with Amelia is her dislike of the car seat. Amelia is as quite and sweet as can be even through church if she's in arms, but we don't even bother taking her seat in anywhere. As soon as she gets in it Amelia cries and cries. She therefore does not like the car. Beth and I will be taking Lydia and Amelia to Savannah next week for doctors' appointments. Like with the last Savannah trip I'm dreading it a bit, this time just because of the car ride with Amelia. Beth will drive, so I can attempt to calm Amelia while we're on the road, but there are no guarantees that it will help.

We are really putting the miles on the van with the girls' activities. I went to fill out forms for Lydia's school and learned that it may take more like another six weeks to finish processing. This means that Lydia will not likely start immediately after her birthday. It would be great if we could complete the long distance therapy before school starts. It will be really long days for Lydia and myself if we have to make that drive after school each day. We are grateful for the technology and the potential it gives Lydia though.

I'll work on getting new pictures up, but it may be in stages. Beth volunteered to take Lydia to therapy today, as it is Beth's day off. I gladly accepted the offer, in hopes to accomplish some housework and give the babies a normal day at home. I need to be off to laundry and supper preparations.

Continued prayers and blessings,
Allison

Thursday, August 14, 2003 6:42 PM CDT

O.K. What's been going on around here?

I am having such a good time. Last week I had my doubts. We were having fun, but NOTHING else was getting done. I was afraid that my husband would never get anything but cereal for supper and even with that, that we'd never see the bottom of the kitchen sink again! Last year, it was a lonely transition for me when Jason went back to school. After six weeks of being poked and prodded in the hospital, Lydia didn't even like to be talked to, much less touched. The house was very quiet with little activity! This time that hasn't been the case, but I didn't realize what a difference it would be. I was afraid I'd have people withdrawal again, so I planned several outings last week.

It was nice, but boy, oh boy. Getting the four of us ready and out of the house by myself is a lengthy task! I spent the WHOLE morning preparing us to go out for lunch. We met Jason and his co-workers one-day and he was very impressed that I not only arrived early, but also managed to get everyone into the restaurant by myself. That was no small or subtle feat! We looked ridiculous, but I enjoyed the challenge. My day was a wash though, other than dressing, playing, diapering, feeding, medicating, bathing, eating—you get the picture.

It's coming together though. Not going out doesn't leave me lonely, and it does allow for a little bit of domestic work to get done! The younger two have even been napping at roughly the same times allowing me to find the bottom of my kitchen sink and cook supper a few evenings. When everyone is awake, I have found us really playing. We've been singing and reading books, like I've always dreamed that I would, but motherhood did not exactly start off as I'd expected. This week it's looked more like my "ideal", although I could have never dreamed I'd have so many little bundles of joy at once. We truly consider ourselves very blessed.

It's interesting to me how diverse the responses are to our family. Believe me we can't go anywhere without some kind of comments. Only recently has someone automatically described us as blessed in regards to having three little ones. Most commonly we hear about how our hands must be full. As we were waiting at the restaurant for Jason and his party I took a good look at us. It occurred to me that it's amazing that we don't get more outright negative responses than we do. We were the picture of many things that make people uncomfortable: a transracial family, a handicapped child, and even a baby nursing in public (just to name a few). Then when strangers ask the ages of the girls they really look at us funny. SOMETIMES we go on to explain how the youngest two can be six months apart. :o) It's amazing how many can't seem to figure it out, Jason's students included. He did propose that smaller mammals have shorter gestation periods, and he has a pretty small wife. :o) They didn't buy that one.

Despite being shocked into our new schedule with Jason back at school, we've actually made some progress here at home. We love being in the house. It is amazing to be raising our kids here. There are still boxes in every room that need to be unpacked. But with the help of Jason's mom, we've managed to strip the wallpaper off of three rooms. I felt like the ultimate multi-tasker as I was pulling down wallpaper with one arm while holding Amelia nursing in the other! Jason has even managed to paint the master walls. Once the trim is painted we'll get to move in. We've chosen to sleep on our mattress in Amelia's room in the meantime.

In the meantime, our DFCS case is ongoing. It will remain open and monitored for at least three more months after a case plan has been agreed upon. We just saw the first draft of the plan this afternoon. To our benefit, Lydia's physical therapist has spoken with our DFCS worker and our attorney to explain her theory on Sophie's fracture. We have regularly gotten Sophie to show off her new developmental tricks to Cora. Cora recently pointed out that Sophie has ALWAYS trapped her left arm funny while rolling over. She explained that in a repetitive motion, that stress could easily have caused a hairline fracture that progressed to a full break. Our caseworker was very interested in the observation. Our case is no longer at the stage where it could be simply dropped without a lawsuit, but this could help us wrap things up.

All that said, I feel like it's been a while since I have given an overview of how each girl has been doing. They are all a little stuffy as of the past few days, but there are more interesting things to report, so here it goes.

LYDIA: Lydia is doing great. She is responsive and showing a lot of small steps of progress. For one thing, her muscle tone is improving a little bit. When picking her up under her arms, she's been so floppy that it's been as if she melts or folds. For the first time in a LONG time, her therapist pointed out that there is a little bit of resistance there from the shoulder muscles. If Lydia keeps this up she'll be easier to handle! Also, Lydia favors her right side, but she's turning and looking to her left when talked to. I actually got a startle response out of her yesterday accidentally. I came up to her from the side to touch and talk to her and I thought she was going to come out of her skin! Lydia jumped. I can't remember when I've seen her do that. I didn't mean to scare her, but it was nice to see such a natural response. As far as seizures go, I also can't remember when we've seen one. I've never been able to say that before. For a baby that everyone expected to die last summer, this is mind boggling. I guess that God and Lydia had other plans. We continue to enjoy seeing them unfold. Her therapists are all excited to see how much progress she will make when she starts school. I can't believe that it's just over a month away. She'll start just after her third birthday, which will be Sept. 17! Lydia will be getting therapies there as well as outside of school. She may start taking naps regularly with that schedule. :o)

SOPHIE: Sophie is very mobile all of a sudden. Her arm has been healed for some time now and she uses it equally to the other one. She is rolling everywhere, starting to pull to standing from sitting, and spends a lot of time on her hands and knees. We won't be surprised if she learns to walk and crawl in the same week and soon at that. She is growing so quickly. It's not unexpected with her wonderful appetite. She loves her solids and her bottles of Mama's milk. I've been successful at pumping for her since Amelia's birth. I received an email last week from one of the baby clubs telling me that my nine month old should be taking a sippy cup by now. OOPS. I hadn't even thought about it. I found the ONE that we own and our smart girl picked up the skill in ten minutes flat with the spill-proof valve and everything! I sure felt like we'd accomplished something that day. :o) And then today, we tried a straw, and again Sophie took right to it! Drinking and eating are both such fun events now. Sophie has EIGHT teeth. Since I've been cooking more this past week there has been a lot more non-jarred food in her diet, which she loves. Banana bread is her current favorite. Sophie's taking two good naps a day, but all a sudden has started waking during the night. She and Amelia both waking up makes for a rough night for Mom and Dad. Sophie babbles and laughs all the time, as she plays hard. She's hot stuff as she covers lots of ground in the kitchen in her walker. She's a big helper with supper preparation. :o) I'd love to have a fraction of her energy or naps!

AMELIA: Amelia is growing in size and charm. When Jason retrieved her from her bed for her nighttime feeding, he declared that she'd gotten thicker since he held her just hours earlier! She is smiling and cooing at us more frequently now. Her head control and overall muscle tone is improving. I think she's finally really figured out night verses day, but that doesn't mean she's sleeping through yet. Amelia is taking at least one longer stretch, which we are grateful for. We tease that she's going to crawl first around here. She can kick and scoot quite a distance when she's on her tummy and mad. Amelia is enjoying the swing, allowing me to put her down more. She is still our cuddle-bug that LOVES to be held though. She has the most intense need for snuggles in the evenings before bedtime, which works well for me. When Amelia doesn't get her way, she can poke out her bottom lip like a pro! She's also learning other impressive baby tricks. On the way out the door to church Sunday, Jason was changing her diaper. Somehow she managed to projectile poop on his shirt, tie, pants, and all over the carpet! I don't know if her stunt or Jason's response was more impressive. You know you're a seasoned dad when you just change your tie, wipe off the rest, and plan to keep your coat buttoned. :o) Needless to say, Amelia's acting like a very normal baby. Even the normal baby startles are much less now.

We aren't seeing any seizures. Amelia still takes a dose of B6 every morning, but even that is now liquid and more pleasantly flavored. We are still eager to see her continue to develop and show us that she will not be delayed, but we can't fast forward to that answer. Occasionally I realize that somewhere down deep I'm still holding my breath. Amelia broke out in a very upset cry one night and I was expecting for it to progress into seizure activity. Like her big sister used to, Amelia got so inconsolably upset that original night before the seizures started. But instead, to my dismay, she stopped crying immediately when I picked her up. There is still an undercurrent of concern, but I like to think that it's fading with each good day that passes.

Hopefully that will make up for my longer than usual span between entries. :o) Thank you for your interest in our family. It means a lot. We are blessed in many ways beyond our girls, and your friendship is certainly one of those ways.

Continued prayers and blessings,
Allison

Monday, August 11, 2003 10:42 AM CDT

We're all doing well. Last week was my first week at home by myself as a mother of three! To say I've been busy would be quite the understatement. In fact, I'm not going to take time right now to type a lengthy update. It's on my list to do, but other things are higher at the moment. I did want to let you know that I put new pictures in the album though. As busy as I am I'm sure having a good time. We are so blessed! Enjoy the pictures for now and I'll try to update soon.

Oh, check out Raef's page (linked at the bottom). They have some very good news. Leave a note in their guestbook to celebrate with them!

Until next time,
Allison

Saturday, July 26, 2003 11:02 AM CDT

(Edited 7/27 to add--Check out the new pics!)

It's been a big week. Monday morning a friend had our old house cleaned for us so another couple could move in that night! Through a mutual friend, we had received a call Sunday with the proposal of a month to month rental of our house while we are trying to sell it! Isn't God's timing amazing! It is working out to be a blessing for this couple as they are in transition and didn't want to have to sign a six-month lease anywhere. It's obviously a blessing to us as well—not only financial. After just a weekend with the AC turned up the house already smelled ‘vacant.’ It will be easier to sell with all systems running as usual!

Jason is out this morning getting one of the last loads from the old workshop. It's coming together more quickly than I'd imagined. There are still quite a few boxes and lots of walls to be addressed, but it's moving along.

We are also making progress towards the requirements for Lydia's preschool enrollment in September. We ended up having to sedate her yesterday for her hearing and vision screening. She was a master two-year old in fighting the process. We couldn't get the hearing done because either her head was moving too much, or she was protesting too loudly from me holding her still. We did get it accomplished eventually, and then had to pry her sleeping eyes open for the vision. :o) There is more than one way to do things!

That was a large part of our two and a half-hour stay in the pediatrician's office. We were primarily there for Amelia's two-month-old well visit though. Amelia is up to 10lbs and 5oz! She is also 22 3/4 inches long, placing her at 50n both height and weight without even adjusting for her early arrival. Dr. Anderson observed that Amelia's social interaction is at more of a one-month level. We'd like to adjust her age as an explanation for that, and hope that she will continue to move forward and catch up shortly. Other than that she's doing great, with muscle tone that's increasing appropriately.

I couldn't resist, so we weighed Sophie too. This previously scrawny baby is now 19 lbs! She will be nine months old next week. She's still not tall or fat, but Sophie is very solid. Muscle is supposed to weigh more than fat. Sophie's exercising all those muscles constantly. She's still not crawling yet, but is now enjoying standing with help. It would be a good thing for this DFCS case to be closed shortly, because I've yet to know a baby that learned to walk without getting a few bruises along the way.

We got to meet our caseworker's supervisor this week when they dropped in unannounced to follow-up on a report. Apparently someone called in a report of a baby with bruises, and the information taken was mixed up enough to make them believe that it must have been us. They figured out the error by the next day, but that was after we had been required to wake Sophie up from her nap and undress her to let them look for bruises. We understand that reports need to be followed up on, but this was still unnerving and frustrating. I try not to think about the DFCS stuff much, but it's hard not to be angry when I do. This last event brought it fresh to my mind. Our children's care is something we invest so much in, and value tremendously. Dealing with false charges so contrary to the truth is hard to understand. While questioning God on the matter, I was reminded how Christ received a criminal's death penalty. That certainly helped me adjust my perspective.

With a physically and emotionally draining week, I've been especially grateful for a few needed naps. First of all, all three girls took a good long nap simultaneously! When will that happen again? Jason and I got in a good nap on a rainy afternoon, and I got in another one on the way home from Savannah. Amelia rode better on that stretch as she was sleeping off the sedation from her MRI.

The MRI day went much better than I had anticipated. I was able to get permission for a reduced "fasting" time before the test, since Amelia is just taking breast milk, which absorbs quickly. The part I was really dreading though was the I.V. It's ridiculous. I can take Lydia's blood without flinching, but I was really dreading this. Sure enough Amelia required five sticks before a vein was attained. Yet, the caring staff made it as pleasant an experience as possible. The physician who eventually got the line and administered the sedation was Dr.Wright, a dear friend of ours. She had told the nurses that she knew we'd show up. Most of their patients from earlier in the day had been no shows. Even that was a blessing. Hungry Amelia didn't have to wait in line at all once we got through registration.

After the MRI, we made our way around the hospital to say hey to everyone. Dr.Wright called up to the ICU and caught us. She ran up to deliver the news personally, that the MRI had been normal. The questionable spots from the previous one were not there! We were glad to get the report and share it with our friends—the doctors and nurses. We were even stopped on the way out of the lobby by another member of the hospital staff. As she asked about each of the girls, Jason was trying to place her. I later reminded him that she is on the housekeeping staff. :o) It was an amazing day of pleasant experiences--a far cry from the last outpatient MRI experience which I was dreading reliving.

It's been a great week. We've even had our first dinner guests over and I got to bake a little in my amazing new oven! In the midst of all the activity, we are really enjoying our precious girls as well as the rest of the shower of blessings! To God be the glory, great things He has done!

Thank you for your thoughts and prayers!

Allison

Friday, July 18, 2003 6:37 PM CDT

We are in the new house! There is stuff everywhere, including back at the old house, but that's not dampening our spirits. We are giddy over all the space we have. We have to learn how to live in it. It's hard to retrain myself not to think that I need to hurry and go to the bathroom in the morning so Jason can get in there and shower! He had to remind me that there are THREE bathrooms here. :o)

There are actually three girls here right now too. The little ones have had quite the week of social activities. They have had a lot of fun playing with friends while Mommy and Daddy have been working. We've had in-house help with unloading the U-Haul, holding babies and unpacking the first of many boxes. Jason is more than half way through with laying new floor in the laundry room and kitchen. This morning's progress on that project will allow my washer, dryer and freezer to join us in this house. The washer and dryer are definitely necessities for a family of five! We've even had help catching up on laundry in the mean time though.

I am so grateful that Jason is on summer break right now. I can't imagine doing this at any other time. He is going on adrenaline, working so hard. I at least have built-in breaks for such things as nursing. My little nursling is doing great despite having a fever off and on for the past few days. We are so encouraged that Amelia's weathering this without seizing! Infections and particularly fevers can really rock the worlds of little ones who are prone to seize. Lydia's seizures were always MUCH worse at those times.

Lydia is also doing great. She always enjoys the attention she gets at "grandmother's camp". Lydia spent several nights with Jason's parent getting three on one attention since her great-grandmother was there too! We are very excited that we now have ample room for Lydia's therapy equipment. Her work-outs should be kicking into high gear. :o)

High gear is the only gear Sophie runs in. We have had a little difficulty getting the cable working, but who needs t.v. when you have a Sophie? Watching her play, figure things out and giggle in delight has been our entertainment. We are none too sad that she isn't crawling yet. I've told her that I need at least a couple more weeks to get some semblance of order around here first.

Amelia is loudly reminding me that she really prefers that I keep my focus centered on her--holding her. Sophie's already in bed. I'm envious of her 7:00PM bedtime. Jason and a friend are out fetching the rest of my appliances. I guess that Amelia, Lydia and I will just have to take a break and cuddle for a while. Just throw me in the briar patch. :o)

Continued Prayers and Blessings,

Allison

Saturday, July 12, 2003 11:58 AM CDT

As we've said before, the only constant in regards to our plans is that they are constantly changing. :o) The afternoon before we were to leave, the hospital had to reschedule Amelia's MRI for July 24th. We had already arranged "playdates" for the older two girls for Thursday, so we used the day to pack rather than travel. It turned out to be a real blessing. We are making great strides with packing and I am grateful for that very productive day. It's also a blessing that Amelia is doing so well so that the MRI isn't urgent.

Last week I forgot to mention that Amelia was up to eight and a half pounds. She's growing at a great rate and eating like crazy. We have gotten a few longer stretches out of her, one or two during our sleeping hours! :o) As much as we like our sleep, we've newly resolved to adjust our perspective on this stage of babyhood. Despite the mild chaos we don't want to let it slip by without enjoying the sweet holding time. Lydia still loves to cuddle, but eight-month-old Sophie already has so many better things to do! Everything else will get done eventually even if we take breaks to snuggle with the baby!

For all those who have volunteered, here's the moving plan:

Tuesday at four we close.

That evening, Jason will start loading the contents of the current house into a large U-Haul while I will be at the new house stripping wallpaper.

Wednesday will be the continuation and hopefully the conclusion of the moving.

I'm sure the rest of the week (at least) will be unpacking and stripping and painting walls.

If you want to help with any of the above (or playing with babies) feel free to call, e-mail or drop in.

We are so excited. We are dreaming of having room to stretch out and can't believe that it is coming soon! Sophie is so observant; it will be fun to watch her check out the new surroundings. And the new kitchen will be a great incentive to get me cooking again! We know firsthand how some blessings are much harder to recognize than others are. It's humbling to think that God has chosen to give us one such as this. Although it's ALWAYS true, in situations such as this it's easy to see how God is working things for our good! The Ronald McDonald House's slogan is "the house that love built". I'm still working on the slogan for our new house, but it deserves a good one. God has blessed us so dearly through the whole process and through so many dear people. Thank you.

We also had a blessed time with my extended family last weekend. It was so good to get together. We even got to reunite with my great aunt. I'll put up some pictures. Everyone has since returned home safely.

We have another traveler in the family. My brother Jeffrey is in special operations with the Air Force. As he put it, he's finally getting his chance to play in the sand. He is on his first deployment. Although we don't know when he left or where he is, we do know that Jeffrey has arrived safely. He has been able to e-mail us and shared that the purple and pink heart patterned fabric that he tied on the handles of his bags made them very easy to pick out of the pile when he got there! :o) He was glad to be going and we are very proud of him, but we look forward to having him back "home" safely.

Tired but Happy,

Allison

Thursday, July 3, 2003 1:01 PM CDT

I want to take a minute to update, although the house needs some serious straightening before our company arrives. My dad's parents from Texas are flying in for the long weekend. My dad (Papa Ron to those who read the guest book) drove up from Florida yesterday. Everyone will be leaving Sunday including my Mom who has been here for six weeks. She'll probably require a few weeks to recover from being worked so hard! :o) She has been a tremendous help.

Lots of others have volunteered to help us with the next transition. Between packing, moving, stripping wallpaper, painting, cleaning and keeping the girls entertained, we will be using those offers! I am grateful that Jason will have a couple more weeks after we move in before school starts back. We are still on for the 15th to close. The inspection went well this morning. We also had a chance to meet and talk with the homeowner. My mom is now on the phone catching up on one of her former piano students--the homeowners' daughter! Even prior to making that connection, we had been impressed with how nice and helpful they have been.

In contrast, the recent DFCS interations although cordial, have not been helpful. We received word yesterday that our case will remain open for a while longer. Next week, we expect to learn what further requirements of us will be. At that time we will have to decide if we can live with them.

In the meantime, our sweet girls are keeping us busy. Lydia got braces to support her ankles while she is in her stander. This piece of equipment offers her maximum support to allow her to bear weight on her legs. It's always surprising to us to see how tall she is she upright!

Sophie is expanding her food repertoire. Self-feeding is very exciting and fun. She loves her Crispix and meat sticks for example. :o) Somehow with everything else going on, I've failed to mention that Sophie has virtually stopped spitting up! She must have gotten the word that big sisters don't do that kind of thing, because it's been so much better for a month or so now. Is this the same baby that would soak 3-4 cloth diapers between each feeding? Solid foods and developing those muscles to master sitting up have been a winning combination in resolving her reflux.

Amelia impresses us with her development as well. Her muscle tone is improving. This morning I put her down on her tummy with her head to the side. She promptly picked her head up and turned it to the opposite side. I remember working with Lydia on this skill when she started therapy at three months old. I know that there's a wide range of "normal" in these first few months. Sophie was on one end--immediate head control, and Lydia off the other--really floppy. So far Amelia is falling somewhere in between. We'll celebrate this step today and hope for many more to come.

We've noticed that Amelia's periods of irritability seem to almost always resolve with elimination of gas. I laughed with the nurse yesterday as we discussed that "normal baby" issues are preponderance to the Tripp family. We have plenty of Valium and oxygen on hand, but gas drops!?!? Amelia has continued to have occasional episodes of twitching that we question, but no obvious seizures or breathing problems like before the vitamin B6 was added. Her follow-up MRI has been scheduled for next Thursday the 10th. I will be glad to have that Savannah run out of the way before moving day.

Jason and I attended a wedding last weekend. Listening to the vows was such a different experience than saying them five years ago. I teared up as I heard "for better or for worse, for richer or for poorer, in sickness and in health…" Although some more dramatic than others, our life together has covered each of these things already. I felt newfound impetus to offer sincere prayers for the newlyweds, as I understand how little we know what challenges they may face.

As usual, I have more to write, but this is as much time as I feel like I can allow myself.

Continued Prayers and Blessings,

Allison

Thursday, July 3, 2003 1:01 PM CDT

I want to take a minute to update, although the house needs some serious straightening before our company arrives. My dad's parents from Texas are flying in for the long weekend. My dad (Papa Ron to those who read the guest book) drove up from Florida yesterday. Everyone will be leaving Sunday including my Mom who has been here for six weeks. She'll probably require a few weeks to recover from being worked so hard! :o) She has been a tremendous help.

Lots of others have volunteered to help us with the next transition. Between packing, moving, stripping wallpaper, painting, cleaning and keeping the girls entertained, we will be using those offers! I am grateful that Jason will have a couple more weeks after we move in before school starts back. We are still on for the 15th to close. The inspection went well this morning. We also had a chance to meet and talk with the homeowner. My mom is now on the phone catching up on one of her former piano students--the homeowners' daughter! Even prior to making that connection, we had been impressed with how nice and helpful they are being.

In contrast, the recent DFCS interations although cordial, have not been helpful. We received word yesterday that our case will remain open for a while longer. I expect to learn next week what their requirements of us will be, and we will have to decide if we can live with them.

In the meantime, our sweet girls are keeping us busy. Lydia got braces to support her ankles while she is in her stander. This piece of equipment offers her maximum support to allow her to bear weight on her legs. It's always surprising to us to see how tall she is she upright!

Sophie is expanding her food repertoire. Self-feeding is very exciting and fun. She loves her Crispix and meat sticks for example. :o) Somehow with everything else going on, I've failed to mention that Sophie has virtually stopped spitting up! She must have gotten the word that big sisters don't do that kind of thing, because it's been so much better for a month or so now. Is this the same baby that would soak 3-4 cloth diapers between each feeding? Solid foods and developing those muscles to master sitting up have been a winning combination in resolving her reflux.

Amelia impresses us with her development as well. Her muscle tone is improving. This morning I put her down on her tummy with her head to the side. She promptly picked her head up and turned it to the opposite side. I remember working with Lydia on this skill when she started therapy at three months old. I know that there's a wide range of "normal" in these first few months. Sophie was on one end--immediate head control, and Lydia off the other--really floppy. So far Amelia is falling somewhere in between. We'll celebrate this step today and hope for many more to come.

We've noticed that Amelia's periods of irritability seem to almost always resolve with elimination of gas. I laughed with the nurse yesterday as we discussed that "normal baby" issues are preponderance to the Tripp family. We have plenty of Valium and oxygen on hand, but gas drops!?!? Amelia has continued to have occasional episodes of twitching that we question, but no obvious seizures or breathing problems like before the vitamin B6 was added. Her follow-up MRI has been scheduled for next Thursday the 10th. I will be glad to have that Savannah run out of the way before moving day.

Jason and I attended a wedding last weekend. Listening to the vows took was such a different experience than saying them five years ago. I teared up as I heard "for better or for worse, for richer or for poorer, in sickness and in health…" Although some more dramatic than others, our life together has covered each of these things already. I felt newfound impetus to offer sincere prayers for the newlyweds, as I understand how little we know what challenges they may face.

As usual, I have more to write, but this is as much time as I feel like I can allow myself.

Continued Prayers and Blessings,

Allison

Thursday, July 3, 2003 1:01 PM CDT

I want to take a minute to update, although the house needs some serious straightening before our company arrives. My dad's parents from Texas are flying in for the long weekend. My dad (Papa Ron to those who read the guest book) drove up from Florida yesterday. Everyone will be leaving Sunday including my Mom who has been here for six weeks. She'll probably take a few weeks to recover from being worked so hard! :o) She has been a tremendous help.

Lots of others have volunteered to help us with the next transition. Between packing, moving, stripping wallpaper, painting, cleaning and keeping the girls entertained, we will be using those offers! I am grateful that Jason will have a couple more weeks after we move in before school starts back. We are still on for the 15th to close. The inspection went well this morning. We also had a chance to meet and talk with the homeowner. My mom is now on the phone catching up on one of her former piano students--the homeowners' daughter! Even prior to making that connection, we had been impressed with how nice and helpful they are being.

In contrast, the DFCS although cordial, was not helpful. We received word yesterday that our case will remain open for a while longer. I expect to learn next week what their requirements of us will be, and we will have to decide if we can live with them.

In the meantime, our sweet girls are keeping us busy. Lydia got braces to support her ankles while she is in her stander. This piece of equipment offers her maximum support to allow her to bear weight on her legs. It's always surprising to us to see how tall she is she upright!

Sophie is expanding her food repertoire. Self-feeding is very exciting and fun. She loves her Crispix and meat sticks for example. :o) Somehow with everything else going on, I've failed to mention that Sophie has virtually stopped spitting up! She must have gotten the word that big sisters don't do that kind of thing, because it's been so much better for a month or so now. Is this the same baby that would soak 3-4 cloth diapers between each feeding? Solid foods and developing those muscles to master sitting up have been a winning combination in resolving her reflux.

Amelia impresses us with her development as well. Her muscle tone is improving. This morning I put her down on her tummy with her head to the side. She promptly picked her head up and turned it to the opposite side. I remember working with Lydia on this skill when she started therapy at three months old. I know that there's a wide range of "normal" in these first few months. Sophie was on one end--immediate head control, and Lydia off the other--really floppy. So far Amelia is falling somewhere in between. We'll celebrate this step today and hope for many more to come.

We've noticed that Amelia's periods of irritability seem to almost always resolve with elimination of gas. I laughed with the nurse yesterday as we discussed that "normal baby" issues are preponderance to the Tripp family. We have plenty of Valium and oxygen on hand, but gas drops!?!? Amelia has continued to have occasional episodes of twitching that we question, but no obvious seizures or breathing problems like before the vitamin B6 was added. Her follow-up MRI has been scheduled for next Thursday the 10th. I will be glad to have that Savannah run out of the way before moving day.

Jason and I attended a wedding last weekend. Listening to the vows took was such a different experience than saying them five years ago. I teared up as I heard "for better or for worse, for richer or for poorer, in sickness and in health…" Although some more dramatic than others, our life together has covered each of these things already. I felt newfound impetus to offer sincere prayers for the newlyweds, as I understand how little we know what challenges they may face.

As usual, I have more to write, but this is as much time as I feel like I can allow myself.

Continued Prayers and Blessings,

Allison

Thursday, June 26, 2003 9:05 PM CDT

We are expecting a letter to arrive soon with the results of the DFCS appeal. The meeting wasn't too painful. Everyone was very nice and we were blessed to have legal representation from a fellow church member. We were given no feedback as to their thoughts. They were merely hearing our reason for appeal and gathering information. They said that they'd be responding via the letter.

Later the same day, we had our first follow-up home visit from our new DFCS worker. Ms Garren was very sweet and easy to have in our home. Of course we'd still rather our case be closed before the next visit. That's scheduled for Monday pending the outcome of the appeal.

We've also been busy with house stuff the past few weeks. Neither our finances or nor physical space has ever been tighter than they are now. As a friend put it, we are living in a LITTLE dollhouse with LOTS of dolls. :o) Since we've been back from Savannah, so many things have fallen into place to make house hunting a reality.

We had been resolved to make this two-bedroom house work because that's what we've needed to do. Lydia is sleeping in the dining room behind folding screens. (Jason calls it her apartment.) Sophie has the second bedroom, which she demanded by being a sensitive sleeper. And Amelia is in our crowded room in a cradle. The sleeping arrangements are only the beginning though. Lydia's new wheelchair along with the swing, exersaucer, and other various baby and therapy equipment make it virtually impossible to walk through the living room! Let's just say that the house is not in prime showing condition. :o)

Through many generous offers from different members of the extended church body, we have recently found ourselves in the position to be able to go ahead and buy a house. Then we can get out and show this one empty. What a mound of blessings! We are very excited about a house that we saw yesterday and have plans to firm up the numbers with the mortgage broker today. I hope to have more wonderful news on this subject soon.

The girls are all doing well. Sophie is wrapping up a long lingering cold and Lydia even woke up quite congested one morning this week. It's always hard to know how much is allergies verses infection though. Amelia is eating well. Jason's fun with adjusting her age recently waned. Our first two girls averaged sleeping through the night at about 10 weeks. Jason prefers starting from birth date rather than due date to predict Amelia's prospective "sleeping date"!?!? :o)

We are still tired, mainly from having a little one insisting on eating every three hours at night. How quickly we'd forgotten that aspect of newborn life. The days are not that crazy yet as Jason's at home with me, and my Mom is still in town to help as much as needed. A friend is even coming shortly to watch the girls and give us all this morning off. Others have also helped out by "using" one or more of our girls to get their baby fixes, while they free up our arms for a spell. The girls really are delightful.

Lydia is more responsive than she's been in a long time. Sophie is just in love with life. She's even taken on the roll of comforting Amelia with sweet coos. Amelia doesn't like being in her car seat. When driving home from a late supper out, we've been known to hear quite a soundtrack from the backseats--Lydia snoring, Amelia crying, and Sophie cooing or even laughing. We do have a sweet little circus. :o) Amelia has been a little more fussy the past few days though.

Amelia is fairing so much better than Lydia was at this age. She's been taking the vitamin for two weeks now. Along with the recent fussiness, she's also been a little more twitchy. It's enough to make us nervous. The twitching falls somewhere in between obvious normal baby movements and obvious seizures. We especially hope that this isn't the beginning of something more as Dr.Pearlman is out of town until the first week of July. We're taking it one day at a time, as usual.

I know there's more to say but I have to get ready for my morning out. I just don't have long patches of time to get it all in but I wanted to update anyway.

Continued Prayers and Blessings,

Allison

This update was written this morning. Since then we have put a contract on a house. I hope to tell the whole amazing story soon, but in summary, we are set for closing on July 15th pending the inspection! We can't wait.

Saturday, June 21, 2003 10:03 PM CDT

I can't seem to get around to updating. We've been busy, but with daily life and fun things this week. I'm in a hurry to get in bed before it's time for Amelia to nurse again, so I'll be brief.

All of us are doing well. We haven't witnessed any more seizures from Amelia since starting the B6! I must add that we are still keeping cautious optimism. She looks great and is eating well (especially at night!?!?). Yesterday was her due date. I can't believe it's been four weeks since her birth. Her math teach Daddy has enjoyed explaining to her that she went from "being" negative to zero and now positive. :o)

My maternal grandfather had an unexpected ICU stay this week but is now home (in Mississippi) after a heart cath and placement of a couple of stints. We are praying for a quick recovery.

We have a meeting Tuesday in response to our appeal of the DFCS finding.

Continued Prayers and Blessings,

Allison

Saturday, June 14, 2003 3:35 PM CDT

The good news is that we are still at home! The bad news is that this doesn't mean that Amelia had a seizure-free week. Those two things being said, obviously our plan changed yet again. The vomiting, irritability and screaming never came. There was no warning leading up to the seizure I saw on our way home from supper Tuesday night. Both arms and one leg rapidly twitched during much of the drive. By the time we got home it had stopped. It wasn't supposed to happen like this. Amelia was supposed to give us warning symptoms, then start seizing and not stop until after an EEG was hooked up and vitamin B6 was administered!?!?

We continued to watch her like hawks for the rest of the night. She seemed a bit off, but nothing definitive. The next day I checked in with Dr. Pearlman's nurse, and Wednesday evening I talked to him personally after the next similar seizure. I asked him if an EEG after the seizure would be helpful or not. According to the textbook, it should be, but he noted that we are talking about a Tripp! In his typical refreshingly honest way, he admitted that I'd obviously thought out the scenarios more than he had. :o) We discussed our options, and he decided, for logistics' sake, to just have us start Amelia on oral B6 at home. I then had to laugh as he expressed concern for how to get her to take a tablet. Ummm, just like so many of Lydia's medicines, you just crush, dissolve, and squirt it in the baby's mouth. We have all the tools and TONS of experience with that process.

I did ask Jason to give her that first dose. It was just a vitamin, yet the thought that her medicine-free days were over got to me. (No we don't KNOW that yet, but the possibility further crept into my mind with the action of giving that first dose at home). I know our experience with Lydia has skewed our perspectives and expectations. For example, the hospitalization itself wasn't that big of a deal. I've seen critical and Amelia wasn't there. The harder part is considering the possible long-term ramifications.

The offhand comments assuming Amelia's future normal development are what bother me more. As most parents, even with Lydia for a long time, we've assumed that our babies would be able to do all of the normal things--walk, talk, eat and play. Last night, the epilepsy nurse from Miami called to check on us. Even she was quick to remind me that we don't yet know this is anything like Lydia's condition. I still can't help but get a knot in my gut when Jason muses about how Amelia and Sophie will be dancing around and entertaining Lydia in no time. Seeing Amelia get sick was heartbreaking. For me the most painful part is facing the newfound fragility of my dreams for her future. Even with Sophie I find myself relieved and awed by each new developmental feat. As much of a blessing as it is to be able to see the miraculous nature of a baby giggling at her daddy, right now I think I'd prefer to be able to take it for granted. I can see an application of "ignorance is bliss".

Of course Lydia cannot quite do that. She tests on about a one-month developmental level. Seizures aren't usually accompanies by such significant delay though. Please understand that epilepsy (which is just an unexplainable tendency towards seizures) is most often easily controlled. With merely one maintenance drug, most epileptics very rarely seize, if ever. Therefore epilepsy doesn't threaten their existence like it has Lydia's. For her first two years of life, Lydia's seizures were never controlled despite up to six maintenance drugs at a time. Seizures are also usually short and stop on their own. Lydia's lasted indefinitely until mega-doses of medication were given to stop them. This is what made her epilepsy so life-threatening. The body just cannot thrive while seizing for hours at a time. The last two seizures we've seen from Amelia have been more "textbook" in that they've been short and stopped without intervention. This is certainly better than it could be and has been with Lydia.

Many have asked me about "growing out of seizures". This goes back to controllability. When an epileptic child goes two years without a seizure, there is a high likelihood that the seizures will not return even after medications are weaned. It's certainly too early to say whether or not this is a possibility for Amelia, although it never has been for Lydia. If Amelia has a B6 dependent seizure disorder, she will never grow out of it, but it should be very easily controlled.

Since the B6, we think that Amelia we've not witnessed any more obvious seizures. No one is ready to diagnose her or make predictions. Our prayer is certainly that this "bump" will be resolved with merely the vitamin. One dose a day of one "drug" for the rest of her life is certainly a relatively simple outcome. For good measure, we've started Lydia on B6 as well since this is a highly genetic condition. We know that Lydia has other reasons behind her seizures, but that doesn't mean she couldn't be B6 deficient too.

On the other fronts, Sophie had her last orthopedic appointment this week. She was declared "healed". One could have guessed this without the x-ray. She has been rolling all over the place and lunging to an almost crawling position from sitting. Sophie's our bundle of energy. One day earlier this week I had to call my Mom not long after Sophie got up for help. Sophie was just too happy and energetic for us sleepyheads. She needed someone to PLAY with. She was glad for her Nana to whisk her away for a fun day and we were glad for the opportunity to nap. At least Sophie and Amelia are somehow able to tune out each other's cries. What a blessing that they don't wake each other up!

Lydia's dental appointment went well. I did get warning though that Lydia might have to have some of her gums removed before her permanent teeth start to come in. A seizure drug that she took for her first six months of life left her gums permanently thick. Too bad that the drug didn't even seem to help with the seizures!?!? I took samples of Lydia's blood and urine to the lab. Her liver function is a bit higher than usual, so we'll recheck that in a couple of weeks. We've been monitoring it carefully for the last year because of possible effects of one of her drugs. The urine was a recheck for the UTI that she had last week. Gratefully it was one that was sensitive to oral antibiotics and the pediatrician gladly got in touch with Jason's mom with instructions as we were headed to Savannah. Yes, it's a bit of a juggling act.

I gave Jason a dirty look when he feigned dismay that I was still in my pajamas this morning at 10:00! I was reminded to be grateful for my jokester this week though. Lydia's wheelchair was delivered (YEAH!!). As he was assembling it, Larry expressed his sympathy for our news and told me that he started praying for Jason as soon as he had heard. He told me that he's worked with families with special-needs kids for a long time, and there aren't many men around. He's right, yet I so often take for granted the strength that God has given our marriage through this wild journey. What a first five years it's been!?!? I can't even imagine what's yet to come. I know many of you have prayed for our marriage through our trials. Thank you. I can't imagine doing this without such loving support from Jason!

Larry also brought an alternative headrest for Lydia's stroller. It works great! Lydia is sitting in high style now. (She ought to be with a $3000 stroller and $6000 wheelchair!) Jason has enjoyed playing up his frugality to his students by pointing out that his car is worth less than his daughter's stroller is. :o)

I feel like a broken record, but thanks again for the amazing support. I received an email from Caringbridge this past week, which mentioned that we've had over 1,200 notes in the guest book since the page was started in October 2001. Wow! Each one has been read over and over, when "refueling" was needed. Thank you.

I'm sure there are other things that I've failed to report about over the past few weeks. I'll get them eventually, maybe. Now I'm going to try to go and sneak in a short nap before the next Mommy requirements. :o)

Continued Prayers and Blessings,

Allison

Tuesday, June 10, 2003 4:11 PM CDT

To say that we're tired would be quite an understatement! I don't expect this entry to be very coherent, so bear with me.

Yesterday morning, we were planning on staying in Savannah. Many friends were diligently trying to find us lodging options that would make our stay more pleasant and affordable. Dr. Pearlman didn't make it by until after lunch, at which time we reevaluated our plan. As we reviewed the prior week's events, we realized just how much notice Amelia gave us before she started seizing. She was irritable, vomiting, and screaming for two days before the breathing problems and seizure activity began. Hopefully this pattern will repeat itself if she does indeed seize again. Looking for these signs should give us plenty of time to get to Savannah before the "show". This discussion made going home seem like less of a risk.

Dr. Pearlman also said that he'd really prefer not to repeat the MRI until a month out. This would give a better opportunity to see if there is any change. We were thinking that the MRI would be repeated in two weeks, and that we'd stay in Savannah until then. Hanging out for a month didn't sound quite as reasonable to Dr. Pearlman or to us. Of course, the schedule could still change on a moment's notice if Amelia demands it to. But we all decided that we might as well head on home for now. We are in a limbo of sorts, waiting and watching her to see what's next, but at least in our own beds at night.

We are thrilled to be home. Thrilled sounds energetic though. Don't get the wrong idea. Jason says that he feels like he took a double dose of his antihistamine this morning! :o) This past week wore us out physically, emotionally and spiritually. We are moving in SLOW motion. As glad as we are to see Lydia, we're letting her grandparents keep her one more night before she moves back in. It certainly has been nice to have all the girls together under one roof this afternoon, even though only for a little while due to our schedule.

Life has continued to go on despite our desire to hibernate. As we were unpacking the van last night, we received a call from our recently aquired attorney for the DFCS case. There were mere hours left to the deadline to file our appeal of the abuse finding!?!? Gratefully he was on top of it since we weren't! Then this morning Lydia had a dentist appointment. Sophie also had an orthopedic appointment this afternoon. All of the sudden, Amelia is the least demanding of our girls again--eating well and sleeping a lot in between. She does have her two-week "well-visit" scheduled for Thursday though. And I still need to reschedule my doctor's appointment that I missed last week.

We've been dividing and conquering for the girls' appointments, with help from friends and family. The support we're receiving is invaluable! Supper came via a friend not long after we pulled into town last night. Staples from the grocery store were shortly behind that. Meals were put in our freezer while we were gone, and I understand that even more are scheduled to come.

So, I don't need to cook. Instead I feel the pressure to get everything unpacked and washed just in case… We "joked" about keeping a hospital bag packed back when Lydia's health was so precarious. Knowing that Amelia would be taking us out of town makes me think we ought to take the thought more seriously.

Amelia is doing well. She hasn't had any definite seizure activity for a week now. She's twitching just enough to make us nervous. Without the other symptoms accompanying the jerks, it's more likely that she's just doing normal newborn stuff though.

She's such a sweet girl. Amelia looked up at Jason this afternoon and gave him a big smile. Sophie learned to say "da da da da da da" yesterday and Lydia's eyes have been big for her Daddy since we've been home. Jason's having a special Father's Day week already. If only he could sleep off the rest of it … :o)

We can't thank everyone enough for all of the wonderful support. God is using you to carry us along right now, as we're ready to crash. The adrenaline of last week is gone and the answers haven't come. We still don't know why Amelia was seizing or what to expect from her in the future. We're taking it one step at a time, or should I say one feeding, appointment, nap, etc. at a time?

Continued Prayers and Blessings,

Allison

Monday, June 9, 2003 5:48 PM CDT

Just a quick note to say that we're ALL home (yes, Macon)!?!?! Right now Jason and I need to eat and the girls will be shortly behind us. So, I'll explain later.

Allison

Saturday, June 7, 2003 10:40 PM CDT

Amelia is continuing to improve. She's now nursing well. She even took a bottle from Uncle Jeffrey while Jason and I went out for supper tonight. We've been out of ICU since yesterday afternoon. The only thing keeping us in the hospital has been that Amelia was too sleepy to eat well. It wasn't that anyone doubted our ability to handle NG feeds at home, but that Dr.Pearlman wanted to make sure that she would to wake up enough. If she didn't wake up suficently, he'd need to figure out why. If the night continues to go well, we could be discharged tomorrow.

We've not seen any new seizure activity. We're now told that even if this is a vitamin B6 issue, that it could resurface after an indeterminant amount of time. As far as the likelihood, it's slim. I asked Dr.Pearlman if we should try B6 again on Lydia because apparently it can be effective even after an initial failure. (It didn't seem to have any effect during the trial when she was some small number of weeks old). The B6 could even reverse some of the damage done by the prolonged deficiency. This is all such a LONG shot, but it wouldn't hurt to try.

This discussion led Dr. Pearlman to the analogy that Lydia having cortical dysplasia (abnormal brain tissue) AND B6 dependent seizures (BDS) would be like winning the lottery and getting struck by lightening on the same day--VERY slim odds. The same could be said for even having both conditions in the same family.

I've taken the liberty of fitting the lightning and lottery analogy to the discussion of the genetics in this situation as well. Say Lydia having cortical dysplasia (the known cause of her seizures) was like being stuck with lightning. A grand investigation wasn't able to uncover anything that made her a likely target--no conductors were found in her body. If she were born with a conductor, it would have been cautioned to expect the same in siblings. Since that wasn't the case, the only conclusion that could be drawn was that the incidence was "random". Now that Amelia has had seizures, its harder to imagine that both girls could be randomly struck (even more at the same age). Even though Amelia's investigation is playing out with similiarly fruitless results as Lydia's always did, the is question is surfacing as to whether there is a "stealth" lightning conductor. It would have to be of a variety that is so rare that no one has caught onto it yet. In other words, the whole situation is beyond medical explanation at this point. Without being able to pinpoint what the cause was for either strike, it's impossible to conclude a coorelation. Some sort of common conductor in Lydia and Amelia seems more likely to our untrained brains than two "random" strikes.

I have put quotation marks around the word random because it is merely the medical explanation. Random does not factor in Our God. It is our belief that this is all a part of God's divine plan that has nothing to do with random, chance, or luck. Don't ask us what He's thinking. We don't have a clue, but we have no choice but to trust.

The doctor's are also having difficulty interpreting Amelia's MRI. There were a few small "spots" seen. They could have just been an error with the scan, or they could have been biproducts of Monday's seizure activity. Even if they are the results of seizure activity they don't offer any explanation to the CAUSE of the seizures. Hopefully, a repeat scan (in a few weeks) will help clear things up.

We are strongly considering hanging around in Savannah until the scan. Since Dr. Pearlman can't explain what Amelia did Monday, he also is at a loss to predict what is likely to happen next. If her seizures were to start up again in Macon, we'd need to transfer back here quickly. Although we're not ready to move to Savannah YET, a week or two wouldn't be too bad. :o) This would keep us close to the physician and diagnostic equipment that would be best for Amelia. It would make us all feel better (Dr. Pearlman included).

I don't know when I'll be able to update next. The hospital library is closed for the weekend and computer access once we leave here may not be easy. I'm on Jeffrey's new laptop now, and he's leaving in the morning. No news should mean that the plan has played out. We've jokingly said that Savannah is our summer vacation spot. Hopefully, this year there will be a bit more truth to that. It would be wonderful to have a chance to relax outside of the hospital, even though it would be due to medical circumstances. This would be more of a vacation than the past two summers which were spent mainly in the ICU.

Continued Prayers and Blessings,

Allison

Saturday, June 7, 2003 10:40 PM CDT

Amelia is continuing to improve. She's now nursing well. She even took a bottle from Uncle Jeffrey while Jason and I went out for supper tonight. We've been out of ICU since yesterday afternoon. The only thing keeping us in the hospital has been that Amelia was too sleepy to eat well. It wasn't that anyone doubted our ability to handle NG feeds at home, but that Dr.Pearlman wanted to make sure that she would to wake up enough. If she didn't wake up suficently, he'd need to figure out why. If the night continues to go well, we could be discharged tomorrow.

We've not seen any new seizure activity. We're now told that even if this is a vitamin B6 issue, that it could resurface after an indeterminant amount of time. As far as the likelihood, it's slim. I asked Dr.Pearlman if we should try B6 again on Lydia because apparently it can be effective even after an initial failure. (It didn't seem to have any effect during the trial when she was some small number of weeks old). The B6 could even reverse some of the damage done by the prolonged deficiency. This is all such a LONG shot, but it wouldn't hurt to try.

This discussion led Dr. Pearlman to the analogy that Lydia having cortical dysplasia (abnormal brain tissue) AND B6 dependent seizures (BDS) would be like winning the lottery and getting struck by lightening on the same day--VERY slim odds. The same could be said for even having both conditions in the same family.

I've taken the liberty of fitting the lightning and lottery analogy to the discussion of the genetics in this situation as well. Say Lydia having cortical dysplasia (the known cause of her seizures) was like being stuck with lightning. A grand investigation wasn't able to uncover anything that made her a likely target--no conductors were found in her body. If she were born with a conductor, it would have been cautioned to expect the same in siblings. Since that wasn't the case, the only conclusion that could be drawn was that the incidence was "random". Now that Amelia has had seizures, its harder to imagine that both girls could be randomly struck (even more at the same age). Even though Amelia's investigation is playing out with similiarly fruitless results as Lydia's always did, the is question is surfacing as to whether there is a "stealth" lightning conductor. It would have to be of a variety that is so rare that no one has caught onto it yet. In other words, the whole situation is beyond medical explanation at this point. Without being able to pinpoint what the cause was for either strike, it's impossible to conclude a coorelation. Some sort of common conductor in Lydia and Amelia seems more likely to our untrained brains than two "random" strikes.

I have put quotation marks around the word random because it is merely the medical explanation. Random does not factor in Our God. It is our belief that this is all a part of God's divine plan that has nothing to do with random, chance, or luck. Don't ask us what He's thinking. We don't have a clue, but we have no choice but to trust.

The doctor's also have no clue as to how to interpret Amelia's MRI. There were a few small "spots" seen. They could have just been an error with the scan, or they could have been biproducts of Monday's seizure activity. Even if they are the results of seizure activity they don't offer any explanation to the CAUSE of the seizures. Hopefully, a repeat scan (in a few weeks) will help clear things up.

We are strongly considering hanging around in Savannah until the scan. Since Dr. Pearlman can't explain what Amelia did Monday, he also is at a loss to predict what is likely to happen next. If her seizures were to start up again in Macon, we'd need to transfer back here quickly. Although we're not ready to move to Savannah YET, a week or two wouldn't be too bad. :o) This would keep us close to the physician and diagnostic equipment that would be best for Amelia. It would make us all feel better (Dr. Pearlman included).

I don't know when I'll be able to update next. The hospital library is closed for the weekend and computer access once we leave here may not be easy. I'm on Jeffrey's new laptop now, and he's leaving in the morning. No news should mean that the plan has played out. We've jokingly said that Savannah is our summer vacation spot. Hopefully, this year there will be a bit more truth to that. It would be wonderful to have a chance to relax outside of the hospital, even though it would be due to medical circumstances. This would be more of a vacation than the past two summers which were spent mainly in the ICU.

Continued Prayers and Blessings,

Allison

Friday, June 6, 2003 4:33 AM CDT

If you’ll notice the hour that this entry is posted, hopefully you’ll forgive my brevity. I didn’t make it to the library to post yesterday as I was much more tied up than I had been. For the first time in a couple of days I was cuddling with Miss Amelia! Monday night, she was increasingly irritable and twitchy with any stimulation, therefore we’d been keeping it to a minimum. She is now waking up some as the drugs are wearing off and is more responsive. We’ve seen her eyes a few brief times as well as very normal looking movements (stretching, etc.) along with very sleepy (and cute) large yawns and facial expressions. Since last night we’ve been enjoying taking turns holding her. This includes my brother. Jeffrey made it here last night. I’ll enjoy visiting with him today (hopefully I’ll get some more sleep in before then though).

We are still in the PICU, yet Amelia is off all oxygen. The precautionary antibiotics have been discontinued since her cultures have all come back negative. She is still listless, hopefully just due to the Phenobarb still. Amelia is starting to move her mouth when it’s time for a feed, and she’ll suck on my finger a few times, but nursing hasn’t been successful yet. I know all too well how this exact nursing situation works, and I’m not too excited to be needing to teach my newest drugged baby how to latch on again. I certainly am qualified though and we will get it.

In the meantime, I’ve been pumping for both of my youngest and setting new personal records—15 oz. at one time this morning! As they are watching the freezer fill up, the staff is discussing how many of the other patients I could be feeding with the excess. :o) I am grateful that God has certainly blessed my supply. That’s one less concern on my plate.

The MRI was successfully completed yesterday without the need for sedation. I’ve not heard results yet. This morning I expect to see Dr. Pearlman for the first time since Tuesday. He has been out of town at a conference. This hasn’t been a problem, since we were at the “just wait” stage and we have a report with his partner anyway. Dr. Hemphill was able to answer my latest questions while he’s been covering.

Then again, I didn’t ask what in the world is going on here. No one is willing to even voice a guess at this point. We of course have some fears, but are also trying to keep cautious hope. Today will be the aforementioned time that the B6 should be depleted again if it's going to. If this is the issue, Amelia will resume seizing. It's hard to imagine as good as she looks now though. Even her breathing has been very stable as she’s been waking up more.

I’m sure I’m forgetting something, but I’m ready to go back to bed for a few hours.

Continued Prayers and Blessings,

Allison

Wednesday, June 4, 2003 3:10 PM CDT

Thank you for the many notes, thoughts and prayers. God is truly blessing us with a calmness and peace that passes understanding.

Amelia is doing well. Yesterday, as a “Hail Mary” she was given a couple of doses of vitamin B6. In a few rare cases, seizures result from the body’s inability to produce this vitamin. She hasn’t twitched since, but has been still and resting. The assumption at this point is that it was a coincidence since that diagnosis is SOOOO rare. I had to smile and ask why they expect statistics to apply to this family.

By yesterday afternoon the EEG was deemed no longer helpful as it was so normal looking. So, they removed it an hour or so after the B6 dose. The plan is to observe Amelia for a few days and see if her “seizures” return. If they do, she will be hooked back up to the EEG and given more B6. “What???, so scientific and controlled”, Jason says. Due to lack of continuity of care as well as her knack for instability; we never saw only one variable at a time changed with Lydia’s early care.

Amelia is quite stable, on a minimal amount of oxygen. Her respirations have actually been the concern over the past 24 hours. She is still quite out of it from Monday night’s Phenobarb, and we are hoping that this is the reason. She is oxygenating fine, but just intermittently working so hard for it. There was actually talk of sending us to the floor, but being that we are “in our comfort zone” in the PICU, we will likely hang around there a bit longer as long as they don’t need the bed.

The B6 could take up to three days to deplete again after yesterday’s dose, and the Phenobarb will take even longer to get out of her system. Now we have to wait and see what happens as this occurs. In the meantime, she is written for an MRI. Due to the respiratory situation, they don’t want to sedate her, but we are hoping that she will stay still enough without it. Her eyes haven’t opened for about 48 hours now.

This is why she was started on tube feeds yesterday. Last night, one of her most impressive periods of respiratory distress was during a feed. After a clear chest x-ray, etc., it was decided to put her on Zantac for possible reflux and keep her more upright. Another dear friend managed this, a resident that has been treating our family (Lydia) for two years now! I tell you we are surrounded by love. Jason said that he’d heard several of the staff have to be corrected as they discussed orders, etc. for Lydia in bed 4. :o)

This evening, I’m to try and see if Amelia is alert enough to nurse again. It’ll happen eventually, but I’m not holding my breath for the first attempt.

Jason and Sophie just found me in the library. Jason’s decided that Sophie is going to be a lighting designer as she’s marveled at all the different kinds of lights in the hospital. She sat up by herself without support for the first time today on my cot in Amelia’s room. Sophie is delighting everyone here, including the strangers, even housekeeping at the hotel.

Jason has just left to move his stuff into the Ronald McDonald house (we had been on a waiting list since Monday). This will be a much better set-up, even though we’ll still need one hotel room. Jeffrey (my brother) is going to drive over and visit for a couple of days starting tomorrow. He hasn’t met his newest niece and hasn’t seen Sophie since Christmas. He’s in for a treat and he’ll be helpful to us as well. Jason even has family here in Savannah, which has been a blessing in meeting some needs.

As I said yesterday, we’re doing all right. Compared to last summer, this is a vacation. Granted, Amelia being the patient this time is a heavy weight, but we aren’t have to fight for respect from the staff or for our attentive care for our daughter. It makes such a difference to be in a loving environment! I had a new nurse yesterday and she was amazed that everyone knew me by name. :o)

As an aside, I did want to answer what I understand is the hot question. No, we were never told that Lydia’s condition had even a remote possibility of being genetic. Actually we were told the contrary, by Atlanta, Savannah, and Miami—neurologists and geneticists at all locations agreed that we had no more chance of seeing this again than anyone else with healthy children. Lydia’s abnormal brain tissue was medically described as a “random mutation”. Man’s knowledge is limited though, yet we know that God’s is not. Whatever this is, He knew before laying the foundation of the earth and He knit Amelia together in my womb. To this we must cling.

Again thanks for the wonderful support. It does ease our burden more than you will ever know.

Continued Prayers and Blessings,

Allison

Tuesday, June 3, 2003 10:59 AM CDT

Our hearts are breaking. As I began to mentally compose this journal entry yesterday, the dam that had been holding back my tears started to crack. The poor ambulance driver certainly didn’t understand, yet tried to comfort me with the assurance that the lights, sirens, and increased speed of travel was “just a precaution”. Those things didn’t matter to me at all. And I am all too familiar/at home with the stretch of road that was stretching out before me. Then again, Amelia was seizing her way to Savannah behind me, which was only “supposed” to happen in my worst nightmares.

Ativan and oxygen got her safely to the hospital. She is stable and hooked up to a continuous EEG. For now this hasn’t confirmed any definite seizures. Isn’t that good? For now it simply means that we have another puzzling baby, with no medical diagnosis/explanation for these disturbing movements or a correlation change in vitals: increased heart rate and decreased oxygen saturation. Something is definitely wrong. Something caused her to start turning blue early yesterday morning. Something has made her increasingly irritable and inconsolable since Saturday night. And the scream. This weekend Amelia started the blood-chilling scream like we’ve only heard from Lydia, and only from her when she was seizing.

Amelia is not screaming now. She had a long day yesterday starting with an early morning trip to the local ER with Lydia’s oxygen blowing in her face. After her 3:30AM feeding, she wouldn’t settle down—screaming, grunting, and turning blue around her mouth. So she spent the day being poked and prodded for blood, urine, and spinal fluid in search of answers. Oh how we ached/still ache for ANY benign answer. Everything has come back normal so far. If only she looked as good as her labs!

By mid afternoon we were headed to Savannah—knowing no one would be able to rest until our favorite neurologist had given Amelia a full neuro work-up. It wasn’t until a little before we left in transport that her movements started looking so much more suspicious to go along with her other symptoms. We were 60 miles from Savannah when it was voiced by the nurse from the back that “Amelia’s seizing back here, . . . we need to pick up the speed and get there.”

And now we’re in Savannah. Dr. Pearlman and one of our dear EEG techs were waiting for us in the PICU. They both hung around until way past suppertime—going out of their way to get things moving “since this was a Tripp”. After laying quick eyes on Amelia and her “movements”, Dr. Pearlman ordered Phenobarb (basic seizure drug) to be given, as she certainly looked like she was seizing. Amelia had an after-hours head CT scan (normal results) and then was hooked up to the EEG.

The lack of obvious seizure activity on the EEG is, in a way, frustrating. It could just be that the Phenobarb was suppressing seizure activity enough to skew how it looked on the screen, though not enough to still Amelia’s body. Then again, it could actually mean that these aren’t seizures. Even that could end up not mattering at all as we’ve had to treat many of Lydia’s non-EEG confirmed seizure-like movements as seizures anyway because of the effect they had on her body.

So, we don’t know what’s going on with our littlest one. We would still celebrate an “easy” diagnosis. Amelia is just acting so much like Lydia did early on. There are differences, but we wonder if that’s just because we were able to recognize the need for intervention earlier this time. Lydia was much sicker when she was first admitted at a week old. Yet I still sit in the ICU during my baby’s second week of life, full of questions and pain, only less able to embrace well-intended optimism. Amelia is still being worked up for all the other “non-Lydia-like” possibilities, for it’s statistically more likely to be something else. As Dr. Pearlman said this morning “Lydia” wasn’t supposed to be able to happen again.

Jason was supposed to start teaching summer school yesterday, but this quickly changed his plans. He, my Mom, and Sophie joined Amelia and me in Savannah last night. Lydia is with Jason’s parents in Macon and living large, I’m sure. Yet, last week made it obvious that Sophie is just too young to be away from her mama for days at a time. So, we’re taking advantage of her Nana being here and plan on taking shifts with the girls. How many times have I watched other families with multiple children manage while having one in the hospital? Several such parents told me that, in a way, it helped them keep a balance. I’ll quickly admit that it did my heart good to have Sophie so eager to smile at and cling to me last night. It somehow didn’t matter at all that it was so far past her bedtime!

We are O.K. We have to continue to cling to the welcome reminders that God loves Amelia and us more than we can imagine. This certainly doesn’t FEEL like love though. We still KNOW that God is here and Sovereign. Our inability to feel or understand that doesn’t change it. Any way around it, it is still hard, hard, hard.

Dear friends are caring for us, just as they were in Macon as well. Amelia’s Phenobarb (which was given only last night—not used as a maintenance drug at this time) is starting to wear off a bit as noted by more twitching, arching, and mad faces, along with changes in her vitals. The plan is to burn a CD of the EEG collected so far and overnight it for consults, to possibly Miami and/other specialists. And we are waiting for more labs to come back as well.

Thank you for your continued thoughts, prayers, and support. We’ll update as frequently as we can (hopefully daily) yet we don’t have computer access in the room this time, so bear with us.

Continued Prayers and Blessings,

Allison

Friday, May 30, 2003 5:16 PM CDT

(A couple of new pictures are up-5/31/03)

I've started the next journal entry, but somehow keep getting distracted!?! I'll finish soon hopefully, and fill in the nitty gritty of what's been going on--including Amelia's birth story. For now though, I'll post what Jason wrote early this morning after helping with a feeding that left him wide awake. :o)

(Allison signing off to Jason)

An update on the progress of my four girls:

Amelia is a sweet little girl who grumbles only when she is hungry and when she is left awake and alone. If you are feeding her (if you happen to be her mother) she is perfectly content. After she has eaten, she would love for you to cuddle for the next three hours until she needs mama again. Once she is asleep she would be fine with your putting her to the side somewhere and get something accomplished. What more could we want from her?

The picture of Sophie reaching out to touch Lydia is a fairly accurate portrayal. Whatever is within her reach, which is broadening each day, she will touch and most likely grab. This is new ground for one of my children and thus fun to watch. The other half of the picture is that she can now do barrel rolls across the floor. So far she can only go in one direction but she will gladly let you reset her for some more. When we picked her up yesterday morning after her days with "Nana" she was tired, cranky, and a little mama-centric. But after two afternoon naps, (the first being three hours!), and a good night's sleep, I look forward to a better attitude today. (She must have had the time of her life and is now crashing, like coming back from an extended slumber party!) Whether it is just having held only Amelia for several days or it is Sophie gaining weight I don't know but she has gotten heavy. She has been working out. If only we could all be that solid. Her arms seem to be equally able and pain free.

Despite the aforementioned enjoyable news, my most exciting events the last couple of days have been with Lydia. I have seen her work so hard at her therapy this week. Lydia is doing an excellent job of holding her head up. She worked hard with Miss Cora on Tuesday and with Miss Stacy yesterday. I took the lazy approach yesterday afternoon and was lying down with Lydia on my stomach and she picked that head up ninety degrees to look me in the eye over and over again. This was doubly exciting to me because not only was she picking up her head but she also looked really "with it." She so often seems to look through me but today she seemed to look intently into my eyes. Wow. I remembered the day when the doctors told us she wouldn't live much longer. She has continued living and does so with newfound peace. She has now lived in that peace for almost a year. Now, the people who decide about her therapy (notice I didn't say therapists) have declared that she does not have potential. She proceeds to put thoughts in my mind, of what she just might go on to accomplish, that have not been there for a long time. I guess Lydia has never been one to sit in the corner and go unnoticed.

Finally, my oldest girl. (I thought about saying biggest but that didn't sound smart. After all, she was pregnant this time last week. Besides that, the day will soon come when it is not obvious whether Allison or Lydia is taller and/or heavier.) Allison is doing well. She has managed to get some rest amongst all the things she wants to accomplish. She intermittently does too much and then rests when her body tells her that she has done too much. She is more than capable of producing enough milk to feed Amelia. In fact, she is producing all the liquids that Amelia and Sophie need in a day and then some. Just when I got that freezer cleaned out…oh well. She is taking to the mother of three roll as perfectly as she took to mothering the last two. My only concern is that if Allison loses her memory, who will keep us all straight. I can't figure out how to put a disk in her and make a backup copy.

Thank you for your concern and love for my family. We look forward to entertaining you for years to come with the stories that will no doubt be produced by this five-ring circus.

Jason

Sunday, May 25, 2003 8:46 PM CDT

We're trying to head to bed shortly, so I'll be brief and expound later. But I am eager to announce that we are now officially a family of FIVE! Amelia Claire made her entrance on Friday morning, May 23rd. She was four weeks early yet still 6lbs and 14oz! She is 20 inches long and the sweetest little cuddle-bug. We are all doing well and actually made it home last night, 36 hours after birth. (Who would have guessed that we'd be eager to cut our hospital dwelling time as short as possible!?!?) Lydia and Sophie have been shipped out for individual TLC from grandparents, so it's just the three of us at home for now to settle in. I'll post a few pictures before retiring.

As a side note, we received word last week that the DFCS case is not going to be dropped. We're still trying to figure out what all that means. Your continued prayers would be appreciated. God is bathing us with His peace that passes understanding, yet still some have concluded that this early deliver was stress induced. :o) I just can't imagine? Really though, I don't even want to imagine how big Miss Amelia could have gotten if she would have gone the full 40 weeks! We aren't complaining one bit about our wonderful weekend surprise.

Continued Prayers and BLESSINGS!

Allison

Wednesday, May 7, 2003 9:30 AM CDT

We are doing better overall around the Tripp house this week. I wouldn't call things calm yet, but it's going in the right direction.

First of all I'll update you on DFCS. After checking the mailbox daily for almost a week, I was able to get our worker on the phone for the first time after many attempts. She was only willing to inform me that, contrary to my understanding, she has 30 days to decide on our case. That wasn't the answer I wanted. A few hours later she apparently got all her messages from the day before and called me back. (Everyone who knew us and someone that worked at DFCS apparently had called on our behalf!) She in return told me that unofficially there had been no evidence discovered to suggest child abuse and that hopefully she would be able to complete the investigation (make it official) in less than 30 days. I thanked her whole-heartedly.

Also "resolved" this week is Lydia's latest infection. We received clear results from her last culture. Boy, were we glad because we couldn't get an appropriate antibiotic level despite four different tweakings of the doses in 12 days. After drawing Lydia's blood five times and running it to the lab (even Sunday on the way to church) we were all ready to throw a party when word came that we could stop it! Lydia looks brighter and happier. She has a routine appointment with the CMS clinic this week. They are the ones that wrote for Lydia's new equipment and paid for some of it as well. We will actually be seeing Dr. Beckish (Sophie's orthopedic surgeon). It's a shame that we will have to go back mere days later for Sophie's follow-up!?!?

Sophie is doing well. She did choose last week as the time to start RESISTING being in her bed at any time. I can't remember the last time I was so tired--actually tried to nap, but Sophie wouldn't let me. She was happy as long as she was in arms or even laid down and played with. Sunday afternoon I broke down and let her sleep ON me so I got my first much needed nap! It's getting a little better (last night was the first night she slept through after several bumpy ones). Dr. Anderson warned me strongly not to reinforce her resistance by picking her up every time she cried in the bed. We certainly can't get into that pattern this close to the new baby's arrival. We discussed this at Sophie's six-month check-up yesterday. Sophie is up to 14 1/2 lbs (a pound more than the recent weight check at Dr. Pearlman's office and this time she didn't even have clothes on!) She is certainly growing. And Dr. Anderson was even willing to run a CBC that confirmed that Sophie break wasn't due to leukemia. We have even removed Sophie's splint at the doctor's instructions. Sophie isn't moving that arm much yet, but daily displays less tenderness.

An issue that's still very much unresolved is Lydia's schooling (or not). She and I visited Monday. She was doted over by all (it helps to be so cute!). I could see that there were lots of good things going on there for many of the children. Most of them just didn't apply to Lydia at her low level of functioning though. I had a hard time figuring out what type things would benefit HER. I still have parents to talk to and was invited to come back and observe at any time. I was just hoping and praying that it would be more obvious after visiting this time. I also had to ask if getting Lydia speech therapy there would be an obstacle because of the recent decision by Early Intervention.

As of last week, Lydia's speech therapy was abruptly discontinued with no room for discussion. Slues of medical concern were listed as reasoning not to provide therapy. None of these had been discussed with Lydia's physicians who could have easily addressed them. Lydia was even "diagnosed" with TMJ disorder by the office-employed speech therapist. The meeting was very frustrating, as was the seven-page letter of reasoning. It was voiced that Lydia's best interest was their main concern, but that just hasn't been proven or obviously demonstrated to me through the past or this most resent experience. We now need to find a private therapist to employ as we aren't keen on the recommendation to take Lydia to outpatient therapy multiple time a week--we don't want Lydia or the other two girls exposed to a hospital at that frequency. And now Early Intervtion wants to "reevaluate" Lydia for occupational therapy--we can only assume with the intent of discontinuing that too!?!? At least on that front, our current therapist is willing to continue privately.

Lydia's wheelchair has already been approved and should go into production soon (Thanks Isle!). Lydia's stroller was delivered this week but I was very disappointed to see that doesn't offer appropriate head control. But thanks to Internet research, I was able to discover other better headrest options that the vendor is now looking into. We also received a LARGE shipment of catheter supplies yesterday. We are about to decide to move out the dining room furniture and make the dining room Lydia's bedroom. She isn't sound sensitive like Sophie's become and all these supplies just don't fit in the room she's in now! Who knows what we'll do, but if we're going to be here a while we need to make it work.

Of course we know that the house wouldn't show as well that way. We had already been discussing taking up the sign as it's getting harder and harder to get the house ready to show. In theory we'd put the sign back out after we get settled with three. As we were brewing this plan, a lady came by Saturday to look at it. She said that she'd be leaving an offer in the mailbox this week. It hasn't come yet, but another interested party has already called about looking next weekend. So, in summary we can't decide what to do--still interested in having the house sold, but are needing to simplify life as much as possible right now.

Thanks for the many thoughts and prayers this past week especially. We've even had friends bringing food and sharing "spiritual food" through scriptures. Thank you all.

Continued Prayers and Blessings,

Allison

Wednesday, April 30, 2003 1:22 PM CDT

Is it only Wednesday???? It's been a long week already! Jason and I were able to have a very nice evening out Friday (after naps), but we didn't exactly get to sleep in Saturday. The girls spent the night at their grandparents as planned, but we sent a very fussy Sophie. We couldn't figure out what was wrong all day Friday other than thinking she could be extra sleepy from not napping well the day before and possibly teething. As some of you know, Jason's dad is a doctor and his mother a nurse, so they checked everything Friday night to look for an explanation. They assumed that it must be a viral illness coming on because nothing else was found--and for that reason pushed clear liquids that night when she woke up. It was wee hours Saturday morning when Sophie threw up grape juice all over herself and her grandmother and therefore got stripped down to be changed. At that time, the pieces fell together. Beth (grandma) noticed that Sophie was only moving one arm and John (grandpa) examined the other arm with her and determined that it was BROKEN!

So, we rose at 5:00AM to dress for the ER. Sophie had broken her left humerus (upper arm bone) all the way through. Of course this raises suspicion of child abuse, so a full skeletal survey was taken showing no previous fractures. We knew several of the nurses from time at the hospital with Lydia, and that probably along with the complete absence of bruises likely got us home without a DFCS referral. Sophie's arm was put in a splint to hold it still and that brought her back to her generally happy self--with pain medication for only a day (probably more to make us feel better than anything!).

We were shaken up mostly by the fact that we couldn't identify any traumatic event that would have caused this. After having Lydia as our first child, we no longer live with the illusion/assumption that nothing could be seriously wrong with one of our children. Our minds were reeling through the possible underlying bone disorders that could have caused the bone to break without significant trauma. The orthopedic surgeon was able to rule most of these thoughts out yesterday because the x-ray didn't show a weak spot at the break. The main one that he couldn't rule out was Osteogenesis Imperfecta (a.k.a. OI or brittle bones disease--like Samuel Jackson had in the movie Unbreakable). He also said that Sophie could have even just rolled over on it wrong and broken it--that he sees such about every six months with this bone (far more frequent than we would have guessed). Dr. Beckish said that we could do a skin biopsy to check for OI, but that he doesn't tend to do that unless there have been at least two unexplainable fractures, so we should just wait and see if this happens again, hoping that it was just an odd occurrence.

DFCS showed up on our doorstep a few hours after the appointment. It appears that our doctor's visit from that morning resulted in a child abuse allegation. All advise I've received since has been to just be nice and cooperative, but I'll be the first to admit that those aren't the first two adjectives that come to mind regarding my demeanor. I wasn't rude, but it's tough to smile as a stranger is having you strip your children to search for bruises. And you can't help but wonder if any information is sacred--none of their business. I'm even tired of explaining why Lydia couldn't have broken the arm. :o) "I don't know" just didn’t seem satisfactory to our visitor so she handed me her card as she left so I could call--"in case I remembered how it happened".

I was grateful that Jason's mom showed up during the visit and was able to sweetly visit with the woman, as I just didn't have it in me. Jason also caught the tail end of the visit, eliminating the need for a follow up with him later in the week. She informed us that we should be receiving a letter in the mail soon stating either that they didn't have enough evidence or that they would be removing both children from the home. Short and sweet, huh?

We have nothing to fear in the truth, but just that it doesn't come out--isn't sought out. It certainly felt yesterday like guilty until proven innocent. It's also not that we've forgotten that God is in control and working this for our good and His glory but as I've said before, "our good" is to become more like Christ. We've seen Him do this over and over with Lydia's health, but often not through the easy way that we wanted Him to work. This isn't saying that we've resigned ourselves to thinking that the girls are going anywhere.

My hemoglobin didn't come up any, explaining part of my fatigue, but I think a lot of it is emotional right now. The doctor's appointments alone have been physically demanding this week--Sophie's, Lydia's, and mine. Lydia's went fine resulting in yet the third trial of erythromycin for her gagging (gastric emptying). We have never tried it on top of the Reglan and at this smaller dose before. Hopefully this will achieve the desired results without tearing up her stomach like it has in the past. So far, so good. This brings Lydia up to 20 doses of medication a day (I had guessed wrong in the last entry) and this doesn't count the antibiotic that has been changed to twice a day. Lydia was continuing to exhibit signs that led me to believe that we weren't knocking out the infection several days into the antibiotic, and her trough blood level was low. Hopefully this change in the dose will be more effective. New levels should be back today.

I was so grateful that we got out of the doctor's office in a timely fashion yesterday. We were a work-in and told to expect a long wait. I was not looking forward to the thought of having to draw Lydia's blood before and after administering IV drugs in the waiting room!?!? : o)

Jason pointed out how odd we must look even just walking into church--a wheelchair for our two-year-old, a six-month-old with a "cast" on her arm, and me obviously pregnant. If we don't turn heads!?!?! At least I am to the point in my pregnancy that even strangers "pamper" me. I was very impressed at the teenage boy, whom I wouldn't have pegged for one with training in manners, who opened my door for me last week! So it's certainly not all bad or trying. :o) Lydia isn't even miserable, just still a bit off and we're looking for that to change soon.

The usually calm Allison is a bit stressed out today. I think we've finally come up with a solution to one of Lydia's medications that has to be made into a liquid form (every two weeks). It's just been a nightmare. I've even spent two hours in that pharmacy this week trying to come up with an answer and get the pharmacist to understand that the basic math proved that the last solution wasn't mixed properly. Eventually he saw his error, but it took a lot to get there. Also, I've been leaving one call after another about Lydia's wheelchair, which I figured out has never even been sent for insurance approval--the initial step leading up to ordering. God has blessed us with a good, personable case manager with the insurance company who is working along with me to get this passed. She has also pulled the necessary strings to pave the way for approval of the quantity of supplies we need for Lydia's catheterizing. And finally, I was informed today that the Early Intervention representative wants to have yet another meeting (are we up to near 6 now) concerning Lydia's speech therapy. We have exhausted the approved sessions as of today, and will discuss the future on Friday.

It's just a lot of little and big things piling up right now. Needless to say, I haven't gotten around to making more pictures of Lydia this week like I'd hoped but still plan to. I am exhausted, but know that I need to push myself to spend some time in scripture to refresh my grounding. It's definitely time to post some more scriptures around the house to meditate on.

As Always, Continued Prayers and Blessings,

Allison

Thursday, April 24, 2003 2:27 PM CDT

Happy Belated Easter to All!

What a day it was to be grateful! We had a wonderful morning at church, including Widor's Toccata for the postlude. That's one of Jason's favorite pieces on the organ, one that he requested for our wedding. It does make me laugh to remember how the Waycross Paper confused the spelling and reported us leaving the church to "Widow's Toccata"! (They gave a detailed report of the event like any good small town social section would!) :o) And we also enjoyed the triumphant sound of brass instruments. It was truly a service with the air of triumph and celebration. We are managed to finish up the day with the evening service, keeping our hearts focused on the greatest sacrifice and miracle of Christ's death AND RESURECTION. Another mother and I recently discussed how Easter pricks our hearts even more after having the painful experience of watching the sufferings of our children--and we certainly aren't talking about the pain and intensity of death by crucifixion! What unfathomable love the Father must have for us, his children!

Even the "small stuff" was worth celebrating this Easter! The girls' dresses that I had worked so hard on fit great. (I realized the night before Easter while lying in bed that I hadn't actually tried either one on them!) Thanks to Jason's mother we have beautiful pots of flowers blooming by both the front and back doors. As much as I LOVE flowers, those pots had been filled with dead varieties of plants for a long time now! And both girls are thriving as well!

Lydia is more stable that ever. We went to Savannah this past week to see her neurologist. Not only was Dr.Pearlman pleased with how Lydia's doing, but also he doesn't see the need for us to return until September! Three months had been our longest time between scheduled appointments to date. He praised Lydia for proving all expectations wrong and surpassing them with flying colors. He was more than happy to write a letter of support for her therapies. Of course all this said about how well she's doing, yet Lydia was extra sleepy and grumpy the end of last week, so I took in some urine to have it checked. Sure enough she has another nasty growth in her urine requiring an IV antibiotic (but just one rather than two this time).

Sophie has figured out that she can sleep on tummy or back. Yeah! She's having such a good time playing that napping is becoming less predictable though. Sophie is discovering the world and it's a joy to see. Jason watched alongside me as she batted at and manipulated one thing after another on her exer-saucer. He saw that the toys are really going to get used this time around! The high school baseball game we went to was a feast for her senses. Even though her bottle looked exciting and was readily lunged for, only a few sips would follow before a new sight or sound would cause her to whip her head around in awe! The bottle's not all it used to be anyway as solid foods have barreled into the picture. Sophie's FL grandmother had discovered that Sophie preferred oatmeal to rice cereal, and then her Macon grandmother had a jar of oatmeal WITH fruit. Oh how yummy! We've gone from playing with solids to worrying about limiting the volume. :o) Someone's not going to remain a string bean for long at this rate.

Both girls were measured and weighed at Dr.Pearlman's office. Sophie had gained up to 13 1/2lbs and 26in while her sister continues to hang out just under 30lbs (29), but had gained an inch making her a full 3 feet long! These growing girls got to graduate into bigger car seats this week as Lydia's new one came in (and Sophie got to move up to Lydia's old one). Lydia's new $3000 stroller (that should even change diapers for me at that price) should be here next week. :o) We also got a bigger bath chair. The only thing still lost in the abyss somewhere is Lydia's wheelchair.

That was just one of the things I spent all morning on the phone about. Jason teases me about my reading materials these days--special needs magazines and urinary supply catalogs. I feel like so many aspects of our family life are more "normal" than they've been since Lydia's first hospitalization. This morning was a reminder that most people would still look at our lives as really odd even though it's to a point we dreamed of getting to for two years! I've talked back and forth today with the home health "guy", the urinary supply rep, and our insurance case manager. This latest UTI has given me the incentive to push harder to get the appropriate supplies in the sufficient quantity ordered. We've been making do with less as everyone's been trying to figure out this unusual situation with the need for catheters, etc. for a two-year-old. We're even strange to the medical folks! As usual we're stretching them to set up new standards and protocol.

Speech therapy has been the other recent hurdle. We haven't get it approved yet for the length of session that Lydia needs, but it is to be reviewed again in two weeks. I have reason to believe that things will get worked out then, but I haven't seen it in writing. We are also trying to figure out what will be the best thing for Lydia next. The program that has provided her therapies thus far only goes to the child's third birthday. That won't be until September, but I'd love to go ahead and decide and have things set up for a smooth transition. One question is whether or not to enroll Lydia in a morning preschool program for children with special needs. The option never appealed to me in the past as one that orchestrated my career to allow me to be at home with my children. But in recent discussions, Jason and I agree that we can at least look at it and see if we think Lydia would significantly benefit from what they have to offer (including therapies). Lydia and I have an appointment coming up to visit and see what my impression is.

Lydia has a gastroenterology appointment next week and I an o.b. appointment. Lydia is still gagging more than I'd like and hopefully her doctor can help address this. Hopefully I'll get a good report on my hemoglobin. I've been bordering on anemic the past month and a half, which compounds dizziness and fatigue. Since the last visit, I've actually been consistently taking my iron supplements so we should be able to get a good idea if the plan of treatment is sufficient. I know it doesn't make since that I RARELY miss one of Lydia's fourteen doses of medication a day, yet I struggle to take ONE for myself!?!?

The only other significant event coming up that I can think of is Jason and my date night planned for tomorrow. I also have a conference Saturday morning so the girls are going to have a slumber party at Jason's parents' house Friday. Jason pondered, what will we do that night with an "empty" house? We both laughed as he concluded, probably go to bed early!

Have a great week and thank you for your continued support and interest in our odd family! :o)

Continued Prayers and Blessings,

Allison

New pictures are up, but I hope to try soon to get a good outdoor picture of Lydia in her Easter dress to replace the current one with. I have to catch her first thing in the morning (and infection free) to get those bright eyes that I love so much--so maybe next week.

Friday, April 11, 2003 10:28 AM CDT

Added-Apr 18(I forgot to mention when posting this last entry that I put up some pictures from our trip. Hopefully we'll get some good Easter pictures in the next couple of days, so they should change again shortly.)

It took a while to get things back in order around here after returning from our FL trip. Having an appointment set for Wednesday to show the house did give us some incentive--a deadline. As well as unpacking the MOUNDS of stuff, we've been trying to sort out the next stage of sleeping arrangements. Miss Sophie had been getting caught up in the bars of the cradle, hanging out here and there as she'd just run out of room to move around in there. I had assumed that we'd be in another house by now, but since we aren't it's time to get creative--store some furniture at friends to make room for the necessities, like beds. :o)

Sophie's sleeping better in her larger bed, except one little thing. She's learned to roll over consistently--ONE way. Randomly, she will wake up during the night, fussing because she's rolled over and can't get back to her preferred sleeping position. It simply requires one of us getting out of our bed to flip her like a hamburger patty, and she will go right back to sleep. I want to move her into Lydia's room, but we'll let this stage pass first so Lydia won't be disturbed during the night!

Sophie also had some brief periods of crying on the road-trip. Jason and I got so tickled with her as she let out a couple of syllables of protest every time we encountered a bump. That would include potholes, changes in pavement, etc. Even if Sophie was fast asleep with eyes sealed shut, she'd cry just long enough to make sure we noticed the uneven road!

Lydia was a wonderful traveler, only getting antsy in her seat as we were preparing to stop anyway. Lydia did wear her catheter the whole way for our convenience, so the bag required emptying at our rest stops. We had to explain to Sophie that we weren't going to allow all of our children to "pee in the bushes" as Lydia was--this was a special circumstance. :o)

Once we arrived in Florida, Nana and Papa were just as excited as we had anticipated they would be. Apparently I failed to mention that Sophie is laughing "out loud". That was the first thing that was noticed as the girls were swooped out of the van. Both girls ended up having a good time with the plethora of toys that had been bought or passed on by friends of the family (thanks everyone). Lydia was partial to the lights and sounds variety including one that she can actually "hold" with her arm, shake around, and activate. Sophie's favorite things were the collection of Baby Einstein dvds. I don't want to overuse them, but since I've been home, they are my fallback. If Sophie is refusing to be put down and I need to fix supper, tend to Lydia, etc., I can put one in and she becomes a silent, mesmerized baby! It's almost frightening how "sucked-in" she gets. :o)

As planned, a party was held on Sunday to show off the girls to my parents' friends. So many have been praying for Lydia for a long time without ever having had the opportunity to meet her. Both Lydia and Sophie enjoyed being held and loved on by many. Lydia was the cuddle-bug and Sophie was the entertainment with her infectious laughter.

We never made it to the pool or the beach. The day that was planned for ended up being my day to recover from being up all night. Apparently my pregnant stomach didn't find the cuban food and Krispy Kreme combination too appealing! :o) It was particularly a blessing that the girls were at their grandparents that night, so Jason could just take care of me and we weren't worried about waking anyone.

We managed to get Lydia's first haircut while before I got sick (thanks Cathy). Jason and Papa even baby-sat some so Nana and I could go out by ourselves. We had a good time picking out fabric for the next quilt, for the next baby. My grandmother puts so much love and hard work into her creations for each new addition. We've been keeping her busy lately!

Overall it was a good trip; worth the TEN-hour drive (one way). We just aren't ready to commit to doing it again anytime soon. Of course Nana and Papa already have plans in the making to head this way to greet their newest granddaughter in June. (Can you believe I only have 9 weeks left?!?)

Back on the home front, our main "struggle" has been Lydia's speech therapy. The meeting I mentioned in the last update didn't go as I expected. It lasted all morning, so I didn't get out. It was a lifesaver have help with Sophie though, so I could focus my whole attention on the meeting. The short version of the story is that Lydia was approved for 30min sessions once a week for the month of April. The 30-minute allotments in March had proven to be inadequate to complete sessions in, but there was no representation, therefore opportunity to discuss the reasoning behind this decision that had been made prior to the commencement of the meeting. The extra 15min a week that the therapist and myself are requesting is taking quite some effort to pursue, but I'm praying that we will be able to resolve the issue by the end of the month. I have too many other things to put my time and energy into.

As a result of therapy, Lydia is now enjoying a dum-dum with each of her feeds. Jason panicked when he recently came home and saw Lydia's blue lips, but this time it was just evidence of blue raspberry, rather than lack of oxygen! :o) Lydia is still wary of anything that we put in her mouth, but she quickly changes her expression to one of pleasure when she tastes the suckers. It wasn't too long ago, that putting ANYTHING in her mouth would trigger an increase in saliva too great for Lydia to be able to handle. We are thrilled at this step of progress. Another exciting observation with her therapy is her difference of reaction to different flavors. Her obvious preference to the Sour Cherry over the Sour Watermelon shows a definite cognitive awareness!

Lydia is also making it clear that she is very aware of when she's being "neglected". After being greeted by her Daddy yesterday afternoon, she vocalized with great fervor when he left the room, until he returned. If he was home, he should have been playing with her right?!?! Jason made up for it by taking her out on a "date" including getting her glasses adjusted. He reported that it was quite a scene in the shop, as old friends circled Lydia and peppered Jason with question about how she was doing. Lydia has been their patron for two years now! We've not been very good about keeping the glasses on her lately, as she's been fighting them. Hopefully they won't bother her as much now that they fit better.

I need to spend a little time today returning the house to show condition (I know it's only been two days since it was there, but…). We have another appointment scheduled for this evening. I was just starting to think that maybe I would prefer to wait and move after the baby is born at this point (third trimester fatigue is setting in), but I've given up on trying to predict what will happen next. We've had to learn over and over again to just continue praying for God's direction and "ride the wave". He tends to have better plans than we could imagine anyway. :o)

Continued Prayers and Blessings,

Allison

Monday, March 24, 2003 10:46 AM CST

Edited to add: I'm working on new pictures (2 of 3 up so far), and obviously trying out one of the new background options. Yes, you're still in the right place. :o)

I've about decided being tired and busy are just going to be part of our existence for the next few years if not more. :o) I certainly hate to be bored, and that is easily avoided! We are rocking along, finally all well. The girls' stuffy noses lingered and I had a cold for a few days, but no longer. Jason is the one most affected by the explosion of pollen now in Macon (the cherry trees are beautiful!), but at least allergies aren't contagious! Even Lydia's urine is clear now. By Saturday (day 5 of antibiotics) she obviously felt much better. This was seen in a brightening of her eyes and general countenance. It had been so long since she'd looked this perky that we had forgotten what we were missing! We pray that she remains this way for a long time!

The catheterizing is going well, has easily become part of our routine. Hopefully this will help hold off the threat of future UTIs. Not as easily falling into the routine are the new speech exercises. I am supposed to do them with Lydia during her feeds. That used to be a time during which I could tend to other things (as a machine delivers the food). Old habits just die slowly. I'll learn eventually. :o) Lydia will have her fourth speech therapy session in three weeks this afternoon. These were agreed upon by the Early Intervention Staff for the purpose of accessing Lydia's potential and ability to respond to therapy. Tomorrow is Lydia's yearly therapy review to examine the frequency and length of all her sessions (speech, physical and occupational). I understood that speech would be a main topic at this meeting, evaluating the observations from the initial sessions. This sounded like a reasonable plan/compromise, being that neither Lydia's physician or myself were willing to agree to the initial proposal of speech therapy for 30 min every other week. We both thought Lydia would need more. I was sorry to hear though that that resistance is already present at the unofficial first report that Lydia is responding well to the therapy. The therapist's plan to recommend more frequent, longer sessions for the future is not being received with the promised open minds.

The initial success has been the therapist's ability to get Lydia to swallow more at each session. I have particularly enjoyed watching Lydia's dramatic expressions in response to the strong extracts (flavors) that her mouth is being swabbed with. Cinnamon didn't even get past her nose and lips before she really screwed up her face! It has been a long time since Lydia has had the pleasure of tasting much. It has also been a long time since she has had much oral stimulation (not eating or drinking anything by mouth since June). She's not welcoming our toys and fingers in her mouth with great joy, but is resisting it less already.
It is obvious to me that continuing this therapy at a reasonable intensity is important for Lydia. I understand that the "staff" will not be attending tomorrow's meeting, just the therapists to make their recommendations. It may take some time beyond that to negotiate and know the outcome, but at least the meeting should be shorter.

I am hoping that the meeting will not take too long because I have a friend who is coming to keep the girls for the later part of the morning tomorrow so I can get out and do some things. We have been blessed with several such offers lately (almost one a week for the past month!), and I haven't been shy to say yes. Getting out with the girls by myself is more trouble than it's worth for most purposes. I regularly email Jason grocery lists these days. By the time he gets home in the afternoons, I'm just too tired and ready for supper to bother going out myself. It's easier to get him to run errands for us on his way home.

This may sound great to some, but getting out once in a while is something I enjoy. I have taken my latest projects to the smocking shop on some of my recent outings to get further instructions (I'm still new at this). I am almost finished with the girls' Easter dresses (and an extra middle size for Sophie to move up to this summer when she passes the little one on to her new sister!). Tomorrow, I plan on gathering a few more supplies while I'm out so I can work on the next set of dresses on our way to Florida this weekend.

Yes, we are headed to Ft. Lauderdale for spring break. The beach is not our main objective though. My parents are of course eager to see and show off the girls, and we are looking forward to letting them take over their care for a few days. A dear friend of the family, and neighbor of my parents, will be out of town, so Jason and I are planning on retreating to their house while the girls get spoiled at their Nana and Papa's. I'm sure we won't be strangers, but it should be a break for us. My mom has had a good time preparing for our arrival, in one part by toy shopping. Lydia never got to the point of being able to play with many toys past the newborn level of development, so Nana has been anticipating what Sophie might "need" and enjoy. I'm sure the doting grandparents will be able to keep Sophie busy while loving on Lydia. :o)

Much of my activity since the last update has been trying to keep the house show-worthy. We showed it five times in eight days. Three of those were to repeat lookers. No one has followed up yet, but we'll see. This morning, as another potential buyer called from the driveway, I almost laughed at how "unshowworthy" we all are at the moment. Much later than usual, we are all still in our p.j.'s and I have drool and formula down each side of my robe!?!? The house is no better. I need to put away all our stuff from the weekend.

We were happy to have the chance to "give back" some by spending the weekend at the new Ronald McDonald House here in Macon. For once we were in a service capacity at a house, as weekend relief managers. We were there Friday afternoon until yesterday evening. We enjoyed visiting with the families over meals and empathizing with their joys and sorrows. I hate that we aren't able to do it more often, but it was a lot of work! It turned out to be a busy weekend at the house. The resident manager was there off and on since it was our first time, and we all worked hard. There were lots of unexpected check-ins and outs, and rooms to clean in between. There were volunteers there each day to help with the cleaning and upkeep of such a large house. One of Jason's humorous reports came after he gave a tour to a children's Sunday school class. A little boy had gotten excited by the house's pop-tab-collection project stating that "his friend's dad drinks a LOT of beer so he could get a lot of tabs." :o)

Lydia and Sophie were both doted on by many. I'm wondering if Lydia didn't get a bit spoiled! She is now sitting in my lap while I type because she was actually crying sitting in the next room by herself. Mama cuddles seem to have fixed whatever was wrong. Sophie is taking her first nap of the day (already almost three hours long) glad to be back her own bed. We were all grateful for that last night, all finding our ways there by 8:30PM!

Before we left for the house Friday, the girls had surprises for me. Our 4 1/2-month-old and 2 1/2-year-old are both donning some new pearly whites. Sophie had cut her first TWO teeth and Lydia was showing half of a new molar. It takes Lydia's teeth a long time to break through her thick gums (drug side effect), but Sophie's have become even more visible over the past few days!

It has been much less chaotic around here in general since the last update--now Jason's car is even working properly! Like so many, I've spent a lot of time watching the news unfold about the war. For those of you that know my brother, Jeffrey is in the Air Force, but has not been deployed. He actually just moved to Florida last week after completing his special-operations flight training in New Mexico. (He's trained for the C-130). His new base is rather empty due to deployments. Jeffrey anticipates several more weeks of in-processing, etc. before he will be even available for deployment. Still we are praying for the many that ARE a long way from their families, in the midst of battle.

Continued Prayers and Blessings,

Allison

Friday, March 7, 2003 11:34 AM CST

Whew! Is it really Friday? We are all ready for some down time this weekend! It's been a little crazy around here. Nothing big and disturbing, but merely the conglomeration of lots of little stuff that has worn us out! It's been a little while longer than usual since I've posted, but I can't remember anything before last week, so I'll start there. :o)

Last week Jason came down with the nasty stomach virus and actually missed a couple of days of school. (Missing school hasn't been all that rare for Jason, but it has usually been because Lydia was in the hospital or most recently to go get Sophie. He doesn't like to miss!) I gratefully report that none of the rest of us got "it". Jason said that he got little sympathy when he returned to school. Everyone just wanted to know if any of his girls were sick. :o)

Sophie and Lydia have had stuffy noses, and Sophie is still a bit ill tempered from her 4-MONTH shots. (I can't believe she's that old!) While at her well visit/sick visit (the cold) Dr. Anderson had some news to report on Lydia. Despite the last round of antibiotics, Lydia's urine still had bacteria present in large amounts. The twist this time is that it isn't a bacterium that responds to oral antibiotics. This resistant strain has required us to resort to IV antibiotics.

So, on the way to Bible Study we acquired a new machine and loaded up lots of supplies. I declined the offer to have a nurse come in twice a day to deliver the drugs, and got a quick lesson myself. It's really not that more involved than what I already do with her monthly blood draws and it's nice not to be tied down to a schedule more than we already are with therapists. We can just continue on our merry way with contraptions in tow. :o) (I did take Lydia and her drugs with me and left only Sophie in the nursery this week!?!?) The antibiotics will continue at least until Thursday of next week (10 days). If only I could figure out a way to get insurance to pay us what they are saving in the home health nurse's fees we'd have it made!

I drew peak and trough blood levels yesterday and drove them to the office. That was as far as I could go though. The nurse was gracious enough to come out to the van and retrieve the goods. Unloading the girls again sounded overwhelming at the moment. I have reached a point in my pregnancy that I remember all too well from last time--insomnia. As I am quickly approaching my third trimester (26 weeks), my body is starting to look and feel more pregnant. It appears that I'm forming a pattern in gaining weight very slowly until those last few months when I "catch up".

On top of the general fatigue that is looming around right now, Lydia's cold has involved several nights of wee hour coughing spells. Sophie even woke up crying last night in the 3:00AM hour for the first time in a while. She has been consistently sleeping 10-12 hours for some time now. I want to blame it on her shots, but who knows? Also medically, Lydia is back on the Reglan as her gagging was getting worse. We were able to keep her off of it for about a month. Since the seizures didn't diminish in frequency when we stopped it, but only after the addition of the new seizure drug, it's doubtful that the Reglan was the seizure trigger. We are watching closely now though. The seizures have never completely stopped. They are still daily, but much less frequent.

After dealing with mainly medical stuff most of Monday and Tuesday (such as prescription refills from 3 doctors to 2 pharmacies for multiple drugs!?!?), I settled down to tackle the house Wednesday. I had washed and folded umpteen loads of laundry and washed lots of dishes, but not put anything up yet when I received a call from a prospective buyer for the house. She was driving by and wanted to come in and look!?!? I hadn't even showered, but did my best quick straightening job and called her cell phone back a few minutes later. Jason and I have been getting a bit antsy to get the house sold, and I even had calling the Realtor on my to-do list for the day (it's still by owner right now). We don't know if anything will come of it, but the excited young wife is bringing her husband back to see the house tomorrow. We are prayerful. I'm sure moving while pregnant, etc. won't be tons of fun, but I'd rather do it at 6 months rather than 9!

Then yesterday was an impromptu meeting to discuss Lydia's Speech Therapy for swallowing. I'm still processing some of the conversation, but can sum it up by reporting that we reached a compromise and will meet our new therapist next week. I have spoken to her on the phone and am looking forward to it. Lydia's yearly therapy review is tentatively scheduled for the end of the month, at which time frequency and duration of Speech as well as her other therapies will be reviewed. Please pray that we can settle on what's truly best for Lydia. I think a big part of the issue is the reviewers' question of Lydia's "potential for significant improvement with therapy". Lydia changes in subtle ways so frequently, it's impossible to know what the next week will bring. Even if she doesn't develop by leaps and bounds, she is benefiting from therapy and we need wisdom to know if it's time to seek services from another source.

On a lighter note, we feel like we are just juggling stuff and trying not to "drop" too much. Last night Lydia's feeding pump DIED. I was grateful that it was 7:00 rather than 10:00PM as the home health technician had to bring us out another one. It's just been a bit nuts every time we turn around. I decided to treat the indoor cats with a fresh bowl of water this morning. As I returned to the kitchen, I didn't notice that the bowl was completely turned over until after I had landed on the floor! (I'm glad I didn’t have a baby in tow!) My gate will be even less graceful for the next few days. :o) Jason's car has started turning its lights on spontaneously. After the neighbors so kindly called to tell us last night, he spent some time getting them off. Then this morning neither the headlights nor the brake lights wanted to wake up on command. It's almost comical at times. We still have so much to be grateful for, but boy are we tired!

I was excited to have gotten my smocking revived last week. I was on a real roll, but this week I haven't had a chance to pick it up once! Maybe I can relax with it some this weekend. :o) We really are doing fine, just disheveled. We all have weeks somewhat like this from time to time, right?!?!

Continued Prayers and Blessings,

Allison

Wednesday, February 19, 2003 10:57 AM CST

Lydia is tinkling in the potty! Of course this isn’t in the traditional two-year-old manner. :o) Well, she’s not actually even going into the bathroom. She’s getting lots of help. After yet another yucky urine specimen Friday her pediatrician agreed that it was time to try something preventive. We discussed drugs, but decided on manual catheterizing. Over the past couple of months, I have not been able to come up with a diapering system that would contain what Lydia’s putting out. We’ve figured out that she has been retaining urine until the bladder was SOOOOO full that it emptied “on it’s own”, much like one would do if paralyzed. Her muscle tone has just gotten so poor.

So, a nurse came by Saturday with instructions and supplies. We are still figuring out our system, as the home health company has no policies for this scenario!?!? Thankfully, Jason’s mom had already caught me up on some of what’s available, so I was able to guide the nurse (and send her back to the office for different supplies). We still have some kinks to work out, but this morning was the most successful so far. The tubing is so small, in order to fit Lydia, that it was taking the better part of an hour for her to “drip dry” into a diaper. I used a bag this morning and secured the tube inside Lydia so I could sit her up in her chair and let gravity help us out. It was so much more efficient, and then I just emptied the bag into the toilet. See, indirectly tinkling into the potty! :o)

We are hoping that emptying her bladder more frequently and more completely will eliminate the conditions that were fostering the growth of bacteria—infection. The next step will be adding maintenance antibiotics if this isn’t sufficient. Lydia is on an antibiotic now, based on the appearance of Friday’s sample. The doctor said that she wouldn’t even believe it if the culture came back clear. What we saw was not pretty!

On the seizure front, Lydia seems to be improving. The Topamax was increased this weekend, and finally this coming Friday we will make the last adjustment to get her to the standard therapeutic dose. It is built up slowly in hopes of avoiding making her sleepy, etc. Of course Lydia usually takes much larger than standard doses of everything, so we still have some room to adjust if needed. The seizures are not gone, but far less frequent.

The actual reason I took her in on Friday was her breathing. There are times when you can hear it from across the house! Dr. Anderson assured me that it sounded worse than it looked—Lydia still looked rather comfortable. This past summer Lydia was diagnosed with laryngo malasia (a floppy larynx). Again it’s a muscle tone issue. As she breathes her larynx is floppy and gives rather than making for lots of noise. The noisiness seems to come and go without obvious reasons. Could the additional seizure medicine be affecting her tone? Who knows? But she’s better overall with it than without it.

I assumed that the nursery worker was talking about Lydia’s breathing when she told me Sunday that Lydia was loud during church. She was actually talking about all the vocalizing! :o) They enjoyed our chatter box as well as our smiley baby. Sophie is smiling a lot! Jason’s parents baby-sat for our Valentines date this past weekend. Sophie got her granddaddy to bounce her on his knee and sing to her for the longest time by laughing in response. She’s got somebody right where she wants him now and she doesn’t even know it yet! Jason and I had the best time out on the town in the TWO-seater car. Other than my inability to gracefully get up out of the car due to my growing belly, it felt like the early days of our courtship. We laughed through a movie, ate supper with only ourselves to feed, and did a little shopping. We both found a few treasures; Jason’s in the form of a toy car, and mine matching spring outfits for the two girls.

Earlier that day Jason’s mom and I also had fun shopping. She was able to find a couple of TRIOS of adorable coordinating outfits for all the girls to wear this summer. Aren’t we going to have fun with all those dresses, bows and frills? I got to hear the “baby’s” strong heartbeat Monday and get a healthy report. (The “baby” is a very confusing, contextual term around our house right now!) I am trying to get my smocking going again, as I know whatever I make will definitely get worn plenty. :o)

I almost forgot to mention that I was successful in getting a COUPLE of good pictures of Lydia this past week. Of course I took close to 40 to get those two! But it was worth it. I’ll put the two of Lydia and the best one of Sophie in the album to share.

Continued Prayers and Blessings,

Allison

Monday, February 10, 2003 2:08 PM CST

Oh Miss Lydia! The frequency of her funky stuff has accelerated and decelerated over and over again without any change in medications. That was until this weekend when we did increase the Topamax. I watched Lydia try to nap Saturday afternoon. I say try because she was fighting her body. Every 15 seconds her arms were stiffening out to the sides. That is by far the most dramatic it’s been. Even over the course of a day she has periods of greater or less frequency. The only correlation we have seen (at times) has been "seizing" in response to touch or sound—almost like she startles into a seizure. That can be a bit sad when someone approaches her with a sweet greeting and she responds by “seizing” rather than her former “smiling”. We are praying that the increase in this medication will help. Of course we have no guarantee since we are treating what is technically not a seizure with a seizure drug. It’s the best guess at what to do though.

Lydia has generally been content, although not as pleasant as we’d like. She did require Valium for irritability several nights last week and even additional Chloral Hydrate to lure her back to sleep at wee hours. This was on top of an already increased dose and the additional Valium. Every time she would wake up during the night she’d be doing her thing when we checked on her. Whatever it is it is just not letting her brain or body rest very well.

I am itching for a recent “dressed-up” picture of Lydia. That’s my goal for the week, but it may be a bit difficult to achieve. I’m pleased with the efforts with Sophie from yesterday. The digital camera sure is nice to verify that a good picture has captured. Hopefully I’ll have good ones of both of them to put up soon. I was particularly eager for Sophie’s, as I didn’t have one of her for my picture key-chain. It actually still just had 6 and 12month pictures of Lydia still in it. I’m a little behind!

I told Jason that we’d have to coordinate group pictures in the future to allow me to display all the GIRLS. Yes, we are expecting another girl! We are excited although still looking for a name. I assured Jason that girls could also play basketball and even push cars around on the floor with him. :o) The introduction for the guest pastor at church yesterday included that he has five daughters. I smiled and nudged Jason. He responded that that guy didn’t know when to stop and adopt. :o) Seriously, we are thrilled and look forward to a house full of girls. The ultrasound tech again mentioned that this little girl has some long legs. Jason smugly stated that he didn’t know whom she could get that from. The lady gave my 6’5” husband quite the dirty look.

Both Sophie and Lydia are vocalizing a LOT lately. The background sounds in our house are quite humorous. We are enjoying it (except when it’s Lydia at 2AM). We’re working out our present routine nicely. We’ve even made it to Sunday night church the past several weeks. It still surprises me how my emotions can be pricked when I least expect it. In the middle of the singing last night we came to a verse of "O for a Thousand Tongues to Sing":
Hear Him, ye deaf; His praise, ye dumb, Your loosened tongues employ;
Ye blind, behold your Savior comes; And leap, ye lame, for joy.
It was the very last part that made tears well up in my eyes. One of the other mother’s once shared with me how she is comforted by knowing that some day, maybe not on earth, her daughter would be whole, her body and mind would no longer be crippled. Don’t misunderstand. Lydia is our delight. And she is still “full of life” as the nursery worker said yesterday. But the image of Lydia leaping for joy is enough to tear at a mother’s heart. Someday. For now we’d love a little more contentment and peace for her.

Continued Prayers and Blessings,

Allison

Friday, February 7, 2003 3:00 PM CST

New photos are up. I'll try to write an update soon. In short, Lydia's "episodes" are happening more frequently, so we'll be increasing the Topamax. Hopefully it will work. Other than that we are all doing well.

Continued Prayers and Blessings,
Allison

Thursday, January 30, 2003 at 09:36 AM (CST)

Earlier this week I heard someone say that giving us children is one of the ways God forces us to be flexible. We’ve sure learned that around this house. Lydia continued to get worse over the weekend. By Monday, I counted 6 “episodes” (like I described in the last entry) in TEN minutes. Before the evening was over, Jason decided that we had to address this SOON. Lydia just wasn’t having enough time to recover between them, to have any quality of life. She looked miserable on into Tuesday as well. The neurologist agreed to look at her and get an EEG done to try to figure this out. We left Tuesday night for Savannah so we could get everything done Wednesday morning.

First Lydia had the EEG. She certainly didn’t mind, especially since she looked like she felt better than she had in days (go figure!). It was a time of nostalgia for me. With the gauze “turban” concealing her now longer hair, Lydia’s still pudgy face looked much like my “baby” from the past. It had been almost seven months since her last EEG and even longer since she’d had one when she was pleasant and alert. The amazingly fresh memories rushed back though.

We had a nice time visiting with some of our old friends (the techs). They got tickled with Lydia’s hiccups that she loudly displayed during the whole test! The frequency of Lydia’s episodes was greatly decreased from the day before, but we still caught about four over the 45 min.

Lydia again showed out for Dr.Pearlman in his office. He was able to witness two, agreeing with us that they looked just like seizures even though nothing of the like was indicated on the EEG. Actually, that was one of the best EEG’s he’d ever seen from Lydia!?!? But, since we can’t find another label other than seizures, and therefore a different treatment, we’ll be treating them as seizures with Topomax if they do not continue to diminish over the next little while. Because we still don’t really know if the Reglan had anything to do with the onset of these “seizures”, we will hold it for as long as we can (hopefully a couple more weeks) and then reintroduce it and see what happens. It helped with the gastric motility better than any other option we have, so we plan on giving it another shot.

I’ve seen a few “seizures” this morning, but at the same time, I’ve seen a very different Lydia. Her whole demeanor has changed. I haven’t seen her eyes so bright in a long time! Her Chloral Hydrate is not holding at the present adult-sized dose, therefore the “singing” from her room started very early this morning. She hasn’t stopped moving, batting those long eyelashes and calling out in her own pleasant way for hours now. It’s quite humorous.

I’m glad we made the trip. It had been so hard to adequately describe what she was doing with mere words. The visual was a much more effective way to help her neurologist and me get on the same page, in case we need to continue to address this over the phone. As has become our pattern, Jason’s mom went with us and we had a nice time of leisurely meals and shopping to break up the trip. We are so grateful that she was able to take off on such short notice. We had a good time and everything went quite smoothly, including very well behaved girls, except for their messes!

On the way there, Lydia was “eating supper”, or so we thought. Actually, the van was getting a “milk” bath. Talk about a mess! Then Lydia later wet on the car seat (as if it wasn’t yucky enough) as well as the table in the EEG lab. Sophie just wet, pooped and spit on me (and on lots of bibs, clothes and burp cloths). Not counting pajamas, the girls were each on their third outfits for the day by the time we made it back to Macon. Needless to say, my priorities today are laundry and arranging to get the van shampooed!

My week has not played out as expected, although I was able to make my Monday appointment to hear the baby’s heartbeat and catch a glimpse of the next long-legged Tripp. We weren’t able to tell the gender, but will have another chance this coming Monday with the “expert” ultrasound tech. Between now and then I hope to rest a little and have a larger store of energy. The trip just on the tail end of my cold wore me out. Lydia will be getting a little bit more sedation this evening in hopes that the much needed sleep will last a little longer into the morning tomorrow. :o)

For now I guess that the best concise answer to “How is Lydia doing?” is “We don’t know.” As usual she is defying the available medical knowledge and being very unpredictable. Neither Dr.Pearlman nor I were very surprised that this is yet another unexplainable mystery on the Lydia front. I certainly appreciate his honesty on the matter in contrast to the many other responses I’ve received from others in the past. We just don’t have the answers when it comes to Lydia. Not expecting to certainly lends to a different level of peace and trust at this point. We don’t really have a level of our own understanding to distract or tempt us. This brings the following verses to mind:
Proverbs 3:5-6
Trust in the Lord with all your heart
and lean not on your own understanding;
In All your ways acknowledge him,
and he will make your paths straight.

Continued Prayers and Blessings,

Allison

Sunday, January 26, 2003 at 04:25 PM (CST)

We’ve been experiencing a few bumps around here lately. I’m fighting off something. I've hibernated this weekend, determined not to get truly sick. Jason has been taking over some of my usual tasks, such as caring for the girls. He declared today that one could spend almost all day long just feeding Sophie. I just smiled and agreed. Sophie is eating a lot, going from 4oz. feeds to 6oz. almost over night! This has resulted in a little extra weight—now 10 pounds and 7 ounces! She is still quite thin and with her petite face, she must just be getting longer. She still looks so little to us.

Lydia on the other hand is one big girl. We have finally gotten almost all of her “big girl” equipment ordered. (Yes, the stuff I’ve been discussing for quite some time now.) The only thing pending is my decision on a fabric color for the new stroller. I couldn’t believe that the vendor actually thought he could get away with trying to convince me that they just don’t make a special needs stroller that reclines!?!? I handed him my Internet research and he quickly had an option for me by the time he left. :o) They don’t make a really light-weight stroller to meet Lydia’s needs, but it’s better than the 65lb wheelchair (which will be staying at home for now). Caring for Lydia has made me stronger, but not that strong!

Caring for Lydia has also made us all humble. Her latest “development” (or bump) has us ALL guessing. With startling frequency (up to 6-12 times an hour) she has been assuming these brief but very odd-looking positions. Her bent arms look like she’s showing off her biceps with her fists up in the air. Her head jerks to the left, along with her eyes, and her legs stiffen either straight out or drawn up to her chest. It happens in a split second and lasts for maybe 5 seconds total. Sometimes she holds her breath and other times she aspirates, resulting in gasping or coughing as she “returns to consciousness”. Even if these are seizures, they are so atypical for Lydia seizures, which happen much further apart and last for hours each (longer=far more life threatening).

So what are they? Who knows? The wide variety of interpretations is almost humorous. A therapist offered that she’s seen kids have funny spasms when a portion of their brain is “regenerating”, muscle tone is returning where once absent. The first physician’s response was “Is she just having stomach cramps?” (Granted he was getting his information second hand…) I responded that I don’t know exactly how to label what she’s doing, but that I am certain of a neurological origin! We have finally all agreed to hold her Reglan (for her tummy) for a week to make sure that there isn’t a correlation. This is the drug that we hesitated on because of its possible neurological side effects. It’s been many months since I researched it, but I seem to recall that it can cause seizures or movement disorders. I also think that I remember reading that once the reaction occurred, that just stopping the drug wouldn’t reverse it for a long time if ever. Again, I haven’t had a chance to actually talk to the doctor about this. These episodes don’t really seem to bother Lydia, even though she has them all day long.

Her irritability seems to be isolated to early evenings, so we are increasing her afternoon Felbatol to address that. This irritability had been more frequent, even after finishing her antibiotic for the UTI, so last week we had decided to slowly add Topomax (making her third anti-seizure drug right now). We are scheduled to increase it tomorrow, but I’m putting the plan on hold until I can confirm it with the doctor. How would we know what helped if we increased Topomax while simultaneously stopping the Reglan? And will she start gagging a lot again? (The issue that the Reglan was addressing.) As an aside, we are assuming that the UTI has cleared up and therefor infection isn’t a cause for this. We are expecting confirmation from the lab results next week. So many little bits of information that are difficult to interpret!?!? So, in summary, Lydia is keeping us guessing and tweaking. Is this just another hiccup or a downward turn? I have certainly wished for a conference call between the three different physicians treating Lydia’s infection, tummy and noggin. I am struggling to coordinate it all.

On a brighter note, I just received a call from one of the two Miami nurses that are keeping up with Lydia. Lydia sure has forced us to branch out and make wonderful friends in unusual places. Also, as positive news, we expect to have my 20week ultrasound either this week or next. We hope to find out the gender of the baby. We are very excited. Jason felt the baby kick today for the first time. June is approaching ever so quickly. I have actually had a couple of people comment on my growing waistline this week. It’s still at that point where I doubt that someone who didn’t KNOW that I was pregnant would be able to confirm it based on visual observation alone. I remember thinking that I looked so big at this stage with Lydia. Maybe this time around I know what BIG pregnant really looks like on me. :o) I reminded Jason that we would have to start discussing names after the ultrasound. “Oh boy, already? Didn’t we just do that?” was his reply. I think that Jason would vote for a boy for this aspect alone! We’re running out of girl names that fit all of our mutual requirements. :o) I’m sure we’d rise to the challenge if need be though.

I have a big week ahead with my appointments as well as social plans. We are praying that I am on the upswing of whatever illness was trying to get me down, and that the rest of the family will stay well. I can’t remember when we stayed home from church because of ME. It is so nice to finally be to the point where we can go to church as a family. It took a lot to get where we were comfortable leaving both girls in the nursery, so Jason and I can attend together! Jason's mom sure did help us bridge to this point by taking Lydia with her for so long. We are delighting in this "luxury" and appreciate all that have helped us get here! :o)

Thanks again for your prayers and interest.

Continued Prayers and Blessings,
Allison

Tuesday, January 14, 2003 at 01:55 PM (CST)

The tree and the trimmings are finally put away. I miss the tree-light by which I used to serve the middle of the night feedings to Miss Sophie. Thankfully, lately she’s been waiting until the sun is peeking through the sky before she wakes for “breakfast”. :o) That’s not all that’s changing with Sophie. She’s turning into a real charmer (far less screaming and lots more smiles). She has started a dove-like soft cooing which just warms the heart. Jason and I are reveling in the interaction and playfulness that she offers us. She was even quite the hit last week in Savannah. Everyone enjoyed meeting our new addition, as seeing how BIG Lydia is.

Lydia measures at 35 inches long! It’s said that you can double your two-year-old height to get your final height. If that holds true for Lydia, she would top off at 5’10”! Jason enjoyed sharing with me that this would make her a perfect average of our heights. I on the other hand just thought of much back-ache on my part. :o) On that note, no one was upset that Lydia has actually lost a pound since the last visit three months ago. At just under 30lbs she’s still at the 75%. She still makes her now 9lb sister look like a shrimp.

Of course there’s other news to report from the visits. Lydia’s opthomologist said that her eyes look great. She did recommend reinstituting the glasses, but offered that she believes that the reason that Lydia doesn’t appear to see much, or have visual defensive reflexes, is a cognitive issue. Go figure. It’s just a brain thing. She’s either not processing the images correctly or not alert enough to care.

Then Dr.Pearlman was expecting us, because the EEG techs had read in the last update that we were coming. :o) We’ve made such sweet friends in odd places. :o) It humored me how the newer staff member who took us back was afraid she had just woken Lydia up—her interpretation of Lydia’s chronic state. Then the neurologist immediately commented on how “alert” Lydia was. :o) It’s all perspective, huh? I learned on the way back to Macon, that Lydia's urine culture from earlier in the week had come back positive for bacteria. Since I didn’t know that while talking to Dr.Pearlman, I asked for plan B, just in case she turned out to be infection-free. She had been more irritable and twitchy, even crying some for the first time in months. We were going to have to do something. I assumed that we would have to increase her Phenobarb because the Felbatol, although helping tremendously, didn’t fix it the last time she was like this. Of course a Phenobarb would further decrease Lydia’s alertness and ability to interact, which is a sad thought. This is why I spent the majority of her first two years fighting to get her off of it. This explains the humor behind Dr.Pearlman responding to my request with “but I hate Phenobarb.” We went through the list of other drugs she’d been on and we agreed upon adding Topomax if we need to rather than increasing the Phenobarb. :o)

I was thrilled to hear that she did have a UTI. It was an odd thing to be excited about, but an easy thing to treat. I much preferred that as the reason for her discomfort rather than progressive neurological issues. I asked Dr.Pearlman about his present thoughts concerning Lydia’s neurological state, her potential longevity in light of her newfound stability. He said that as usual, Lydia keeps surprising us. (This is not only 6 months since her last hospitalization, but also since her last dose of Diastat for a prolonged seizure!) He recommended starting making longer-term goals for her since it now looks like she COULD be around for years, rather than hours like we thought last July. First of all that means adding speech therapy back into our schedule to see if we can’t get Lydia swallowing better. Not only would this allow us to eliminate the drug that decreases her drool, but also maybe even start letting her taste some things by mouth again without fearing that she’ll aspirate. I haven’t tested the waters yet, but I’m praying that I won’t be met with resistance from our therapy providers about this change. Lydia will be getting what she needs, it would just be nice not to have to fight for it.

As usual, we spent the night in Savannah in order to be at the appointments the next morning. This meant that Lydia slept in my bed, an unusual occurrence. Also out of the ordinary, she was kicking a squirming during the night at one point. So there I lay as the bed was just a moving and to my surprise, for the first time I started to feel movements in my tummy. My kids were ganging up on me! I enjoyed it immensely even though it was an hour best for SLEEPING. :o) For the most part Lydia is sleeping through the night with the help of her good night time drugs.

I’ve read it, and said it, but this week I’m seeing it so plainly. Children are blessings. When Jason called to check on me today around lunchtime he asked about the pep in my voice. I was glad to report that Lydia had just responded to me with a rare “Lydia laugh” and smile. This was following being received with all smiles from Sophie when I picked her up from the nursery this morning after bible study. I know that they are blessings in so many ways, but today has been full of smiles of affirmation. I believe that our children both know that they are loved, even though they can’t express that in words. It sure makes the other less delightful responsibilities lighter.

Of course one of these tasks is changing dirty diapers, which Lydia has had plenty of lately. It took Beth and me both to sort out the mess in the car on the way back from Savannah. Lydia’s had so many of these that we took her off of the Erythromycin and started her on Reglan instead. It’s been a week now since stopping what we thought was the offender and the diapers are still more than I feel comfortable with. So once again we have some detective work to do to figure out what’s going on with the mystery child. We must have a complicated God to have created and intimately understand Lydia. He keeps us coming back to Him for help, for we sure need His wisdom.

I’ve changed the bottom two pictures in the album and hope to get the top one changed later tonight. We are ever proud of our pretty girls and love to show them off. Thank you for your support and interest. The hits and notes still mean so much.

Continued Prayers and Blessings,

Allison

I almost forgot to mention that our friend Connor is having minor surgery Thursday to have a VNS implanted. The girls and I had a nice time visiting with him and his mother last week over lunch—two sandwiches, one ketogenic meal (small amounts of meat sticks, spinach, cream and oil), a bottle of formula and a bag of formula (feeding pump). Boy did we feel like a sorted crew! :o) But seriously, please keep the Avera’s in your prayers especially this week. (Connor’s site is linked at the bottom of this page.)

Thursday, January 02, 2003 at 12:17 PM (CST)

What a wonderful Christmas! We had a beautiful tree, a Christmas Eve service, family, presents, my traditional Christmas brunch (two this time for each side of the family), and even more fooooood spread out over days, cold weather, and more. We expected to be a family of two again by this Christmas and look at us. Last Christmas I told Jason that I really would love to have another baby within a year, implying even more than the obvious. I really did mean a baby, but also that our lives with Lydia would have settled down to allow that next step in our family. You know, not having to have bags packed at all times for the next hospitalization that could slip up without a moment’s notice. Stuff like that.

I had assumed that this next baby would be by pregnancy, but when we started our adoption journey in September, I couldn’t help but wonder if this desire was coming to fruition. We have certainly learned first hand how God’s responses to our pleas are not always what we want to hear. And how some blessings take more adjustments of thoughts than others to be able to accept and rejoice in them. Sophie was an easy one!

Sophie actually even rolled over on Christmas morning for the first time! We couldn’t believe it. It’s easy to see that we aren’t prepared for the speed of her development. :o) Lydia is presently doing a bit better with head control, but I'm afraid that Sophie has already lapped her. As quickly as Sophie is accomplishing milestones, it’s much harder to realize how miraculous they are. Without having worked so hard and long with Lydia, I’m afraid we’d never be able to have such a level of appreciation.

This holiday has been one to be grateful for. We had precious time with family and friends. It wasn’t until afterwards that it even occurred to me that my pregnant body might not have been as up to the same level of activity we traditionally enjoy. I wouldn’t have had it any other way though. It just may take me a few weeks now to recover. :o) I’ve been aching in places that I wasn’t aware could ache before the end of my pregnancy with Lydia. That I could feel them now, with as little weight as I’ve put on so far, definitely hints that my body isn’t what it used to be before child. :o)

I’m afraid that the house isn’t either. We have had several calls already in the New Year, and anticipate showing the house in the next few days. My biggest pregnancy obstacle of late is lightheadedness. It’s hard to clean up from a seated position, where I’m most comfortable. :o) It’s a challenge of pushing myself and moderating activity at the same time. Jason has been so much help. He returned to school today, much too early in my opinion.

Next week we return to Savannah to see Dr.Pearlman and also Dr.Adams. We haven’t seen the later, Lydia’s opthamologist, in probably nine months! We’ve recently started putting Lydia’s glasses on some to be able to make observations to report. We had started the glasses for the crossing, which isn’t happening with such a “relaxed state” brought on by the Phenobarb. They also have prisms in them though, which could help counter Lydia’s desire to keep her head to the right (her good side for vision). So, we’ll see what she says, and even if the prescription is still accurate.

I don’t really expect any changes from Dr.Pearlman. Even though I just recently reported here that Lydia is consistently pleasant, that hasn’t been exactly consistent. Let’s just say with Lydia, you never need cruise control. She’s always mixing something up. She keeps getting grumpy, and sometimes twitchy, sending us looking for a culprit. We had the start of another ear infection, then the Erythromycin hit her too hard, and I’m going to get her urine checked again tomorrow. Just little things, but it is so frequently something. Even at her worst now, she looks far more comfortable than in the past.

Her favorite activity in the past was swinging outside. Even when she was screaming all the time, the swing worked wonders. For Christmas, her prize gift was a special needs swing. The baby swing had long lost the ability to support her adequately. This one should work for a long time though. We are trying to take advantage of any warmer afternoons to get her out in it. She’s certainly enjoying it.

The New Year is certainly a time of reflection for me. We’ve only had this web site for a little over a year now, and what a blessing it’s been, but I thought I’d share our Christmas letter from Lydia’s first Christmas. It reached fewer people, by mail then, but it touches me to remember and think about all that has happened since. Thank you everyone for your wonderful support.

Christmas 2000

Glory to God in the highest! Praise Him for the blessings that rain down from heaven! For unto us is born this day, a Savior who is Christ the King. This Christmas our family is on our faces before God thanking Him for two precious babies that He has sent to us. We are in awe of the magnitude of love that propelled Him to send His Son to live with us and die for us. This sacrifice is felt with a new depth of emotion as we are now parents. God has entrusted to us an unbelievable little girl, Lydia Vail.

At a week old Lydia became critically ill with what the doctors think was a virus accompanied by seizures. We have since then been in and out of the hospitals in Macon and Atlanta due to Lydia's seizures. Lydia is now three months old and weighs twelve pounds. We have been home over a month and only had two seizures in that time. We also now have a rescue medicine at home that quickly stops her seizures. In January we will attempt to start weaning her off of one of her three medications. Our prayers are that Lydia will continue to go longer between seizures and that we can ultimately eliminate them so she can grow out of her condition and be weaned off all medication before she starts school. We know that God is ever capable of doing this or even instantly healing her if he chooses to do so. God has made us painfully aware of His sovereignty, but also of His love and provision.

We have been overwhelmed by the way that God's people have been there to anticipate and respond to our physical, financial, emotional and spiritual needs. We cannot express our gratitude for all of the prayers that have been uttered to God on our family's behalf. Our prayer for you this Christmas Season is that your eyes will be opened to see all of the blessings that God has showered on you even when they are mixed with uncertainty and pain. We look to the cross and thank God for the pain that He endured for us.

Merry Christmas,

Jason, Allison, and Lydia Tripp (and now Sophie)

Thursday, January 02, 2003 at 12:17 PM (CST)

What a wonderful Christmas! We had a beautiful tree, a Christmas Eve service, family, presents, my traditional Christmas brunch (two this time for each side of the family), and even more fooooood spread out over days, cold weather, and more. We expected to be a family of two again by this Christmas and look at us. Last Christmas I told Jason that I really would love to have another baby within a year, implying even more than the obvious. I really did mean a baby, but also that our lives with Lydia would have settled down to allow that next step in our family. You know, not having to have bags packed at all times for the next hospitalization that could slip up without a moment’s notice. Stuff like that.

I had assumed that this next baby would be by pregnancy, but when we started our adoption journey in September, I couldn’t help but wonder if this desire was coming to fruition. We have certainly learned first hand how God’s responses to our pleas are not always what we want to hear. And how some blessings take more adjustments of thoughts than others to be able to accept and rejoice in them. Sophie was an easy one!

Sophie actually even rolled over on Christmas morning for the first time! We couldn’t believe it. It’s easy to see that we aren’t prepared for the speed of her development. :o) Lydia is presently doing a bit better with head control, but I'm afraid that Sophie has already lapped her. As quickly as Sophie is accomplishing milestones, it’s much harder to realize how miraculous they are. Without having worked so hard and long with Lydia, I’m afraid we’d never be able to have such a level of appreciation.

This holiday has been one to be grateful for. We had precious time with family and friends. It wasn’t until afterwards that it even occurred to me that my pregnant body might not have been as up to the same level of activity we traditionally enjoy. I wouldn’t have had it any other way though. It just may take me a few weeks now to recover. :o) I’ve been aching in places that I wasn’t aware could ache before the end of my pregnancy with Lydia. That I could feel them now, with as little weight as I’ve put on so far, definitely hints that my body isn’t what it used to be before child. :o)

I’m afraid that the house isn’t either. We have had several calls already in the New Year, and anticipate showing the house in the next few days. My biggest pregnancy obstacle of late is lightheadedness. It’s hard to clean up from a seated position, where I’m most comfortable. :o) It’s a challenge of pushing myself and moderating activity at the same time. Jason has been so much help. He returned to school today, much to early in my opinion.

Next week we return to Savannah to see Dr.Pearlman and also Dr.Adams. We haven’t seen the later, Lydia’s opthamologist, in probably nine months! We’ve recently started putting Lydia’s glasses on some to be able to make observations to report. We had started the glasses for the crossing, which isn’t happening with such a “relaxed state” brought on by the Phenobarb. They also have prisms in them though, which could help counter Lydia’s desire to keep her head to the right (her good side for vision). So, we’ll see what she says, and even if the prescription is still accurate.

I don’t really expect any changes from Dr.Pearlman. Even though I just recently reported here that Lydia is consistently pleasant, that hasn’t been exactly consistent. Let’s just say with Lydia, you never need cruise control. She’s always mixing something up. She keeps getting grumpy, and sometimes twitchy, sending us looking for a culprit. We had the start of another ear infection, then the Erythromycin hit her too hard, and I’m going to get her urine checked again tomorrow. Just little things, but it is so frequently something. Even at her worst now, she looks far more comfortable than in the past.

Her favorite activity in the past was swinging outside. Even when she was screaming all the time, the swing worked wonders. For Christmas, her prize gift was a special needs swing. The baby swing had long lost the ability to support her adequately. This one should work for a long time though. We are trying to take advantage of any warmer afternoons to get her out in it. She’s certainly enjoying it.

The New Year is certainly a time of reflection for me. We’ve only had this web site for a little over a year now, and what a blessing it’s been, but I thought I’d share our Christmas letter from Lydia’s first Christmas. It reached fewer people, by mail then, but it touches me to remember and think about all that has happened since. Thank you everyone for your wonderful support.

Christmas 2000

Glory to God in the highest! Praise Him for the blessings that rain down from heaven! For unto us is born this day, a Savior who is Christ the King. This Christmas our family is on our faces before God thanking Him for two precious babies that He has sent to us. We are in awe of the magnitude of love that propelled Him to send His Son to live with us and die for us. This sacrifice is felt with a new depth of emotion as we are now parents. God has entrusted to us an unbelievable little girl, Lydia Vail.

At a week old Lydia became critically ill with what the doctors think was a virus accompanied by seizures. We have since then been in and out of the hospitals in Macon and Atlanta due to Lydia=s seizures. Lydia is now three months old and weighs twelve pounds. We have been home over a month and only had two seizures in that time. We also now have a rescue medicine at home that quickly stops her seizures. In January we will attempt to start weaning her off of one of her three medications. Our prayers are that Lydia will continue to go longer between seizures and that we can ultimately eliminate them so she can grow out of her condition and be weaned off all medication before she starts school. We know that God is ever capable of doing this or even instantly healing her if he chooses to do so. God has made us painfully aware of His sovereignty, but also of His love and provision.

We have been overwhelmed by the way that God's people have been there to anticipate and respond to our physical, financial, emotional and spiritual needs. We cannot express our gratitude for all of the prayers that have been uttered to God on our family's behalf. Our prayer for you this Christmas Season is that your eyes will be opened to see all of the blessings that God has showered on you even when they are mixed with uncertainty and pain. We look to the cross and thank God for the pain that He endured for us.

Merry Christmas,

Jason, Allison, and Lydia Tripp

Thursday, December 19, 2002 at 10:48 AM (CST)

Jason assures me that I am a sentimental mush these days, assuming pregnancy as a culprit. I have been teary this week watching both of my girls SMILE. Lydia obviously started feeling much better once the antibiotic for her UTI was started and has returned to a pleasant demeanor, without the seizure activity. Her smiles are subtler, and involve other parts of her body more than her mouth. Almost every time she is talked to or touched, Lydia’s eyes light up, her toes point, and the corners of her mouth turn up ever so slightly. I cannot remember a time when Lydia has ever been so consistently pleasant and responsive! We’ve certainly seen much bigger displays of pleasure, but they were always sandwiched with very unhappy times for Lydia. My short answer these days to “How is Lydia doing?” is that she is very low functioning, but more stable and pleasant than ever. Lydia is truly enjoyable.

My other smiles this week have been from Sophie! They are still rare and unpredictable, but boy do they light up the room! As much as this is getting to me, I can only imagine how I’ll be effected the first time Sophie actually reaches out for us, . . .. Children are truly blessings!

Sophie’s fussiness is leveling off a little, giving way to a content baby for sometimes an hour stretch at a time. The turn may be because of Zantac. I jokingly say that I just couldn’t handle having a baby that was drug-free! I decided that I could try to live with the laundry (spitting). But, that the possibly hurting, crying baby was too much. This medicine is to neutralize the acid and reduce the discomfort associated with reflux. The cereal had been helping, but had created another issue in constipation, so we’ve stopped that.

Lydia also added another med last week for her tummy. The test showed that her stomach isn’t emptying as quickly as it should. The extended time that her food is hanging out could be contributing to the retching. The drug of first choice was Reglan. The doctor hesitated and asked “Does she have any problems with seizures?” I wanted to laugh with my simple response of “yes”. Reglan is not a drug of first choice for those with a family history of seizures. So, he started her on a small dose of Erythromycin. Jason and I won’t go near this antibiotic because of how it tears up our stomachs. Apparently this side effect is the reason why it was prescribed for Lydia. Her dose is much too small to actually kill bacteria, but hopefully just enough to crank up her system a bit. We’ve already decreased it a little, as we felt like it was too much for her based on dirty diapers and groaning. Again, subtleties have to be watched for, but hopefully we’ll be able to find a comfortable balance for her. This new drug brings Lydia up to 14 doses of medications a day. She’s been on more, and less in the past, but now having the g-tube to give them through means that it has never been easier! Jason has declared that any chronically ill child taking lots of meds should automatically get a g-tube for that sole purpose!

Sophie presently will swallow ANYTHING that you put in her mouth. It’s almost frightening that she is so vulnerable, but it is helpful as we try to find her a formula. We are officially out of breast milk. A little more may trickle in, but after six weeks, we now must find another primary source of diet for her. So far, she seems to spit just as much with everything we’ve tried. I’m getting to learn first hand about formula stains and preparation. I never knew that there were so many kinds, and the ingredients have also surprised me. The first two ingredients of the formula that the hospital sent us home with were corn syrup and sugar! I had no idea. I must say that our parenting experiences with baby Lydia were not very well rounded, and we are now filling out. We’re grateful for the opportunity.

I can’t believe that Christmas is so close, and that Lord willing, we’ll need another stocking next year. We had originally bought four, for our cats and us two, hoping to let children take them over with time. We’ve already done that, and so quickly. How exciting! We anticipate getting to spend time with Jason’s family over Christmas as well as some of mine that will be coming to Macon. Pregnant or not, I’ve found myself more sentimental and emotional with the Christmases since I’ve been a mother. It adds a whole new dimension to the awe of Christ’s birth.

We pray that everyone is enjoying this special season. May you be aware of the many blessings all around you! We all have so much to be grateful for.

Continued Prayers and Blessings,

Allison

Thursday, December 05, 2002 at 11:40 AM (CST)

We had a wonderful Thanksgiving holiday with all kinds of family that we hadn’t seen in a while. Even my brother Jeffrey and his girlfriend Laura were able to spend some time with us (check out the pics). Our girls both received a LOT of attention. We are coming down from the activity this week and trying to find our own schedule and form of organization. Can you believe that Sophie is a month old and this is the first time I’ve been at home with just her and Lydia! All the help has sure been nice (thanks Mom!), but we are also now enjoying settling into our own routine.

I felt so victorious Monday and Tuesday as I successfully made it to Lydia’s doctors’ appointments with them both in tow. And we made it ON TIME! First was the gastroenterologist. While there Sophie proceeded to spit up volumes on the nurse that had insisted on holding her. She made me promise to ask Dr. Israel about suggestions to manage her reflux. :o) He did recommend trying a little cereal in her bottle. When we got to the REAL patient he was concerned about Lydia’s frequent retching over last couple of months. He ordered the first of possibly two tests to be done as an outpatient this coming Monday. This test to see how quickly the food is passing through her system is expected to take all morning, so gratefully Jason’s mom is going to be available to keep Sophie for me. We’ve been doing quite well, but boy I wouldn’t want to have them both at the hospital all morning!

Tuesday, we went to the dentist. I was surprised to learn that almost all of Lydia’s teeth actually have broken through. It’s just tough to see them because of the thickened gums that resulted from the Dilantin she took for the first six months of her life. Frustrating, huh!?!? For this exam I actually had to hold Lydia, and was very grateful that Sophie slept during the process.

I’ve even cooked (frozen casseroles from friends) this week and just felt together. Then last night I had the ultimate mother-humbling experience! The cereal has really made Sophie a much more content baby, but it’s one more step in bottle prep. At 2:00AM (no she isn’t sleeping through the night consistently anymore) I was resentful of having my sleep disturbed and not being very patient. I had warmed the milk and added the cereal but, eager to plug the screaming mouth with the bottle, I completely skipped the step of putting the top on. Yes, I doused my baby in the face with a wide-open bottle of milk. That is, baby, her clothes, my clothes, the floor, etc.

Some of you know that I’ve been able to nurse Sophie some with the help of a devise that delivers the milk at the breast. (Check out lact-aid.com if you’re curious.) But, the cereal won’t work in there, so especially at night she’s taking the bottle for that purpose. We’ve also been grateful that we’ve made it a month feeding her almost all breast milk from my freezer stash accumulated during Lydia’s last hospitalizations. Believe it or not we’ve also had a few dear friends supply some donor milk. We’ll continue as long as we can. My desire, because of the pregnancy is not to relactate (develop a milk supply now), but just to keep Sophie accustom to nursing so she can continue when the baby is born, and my supply comes in naturally. She will only still be a baby herself at the time, so I’d love to be able to provide this for her. The nursing bags can be more fully prepared before nighttime comes. Maybe that would have been a better option with my frame of mind last night!?!?!?

It really has been a good week, other than the obvious exception. I even discovered a way that my pregnancy benefits Lydia. My heightened sense of smell allowed me to pick up on a UTI. One really has to be a detective these days to figure out that Lydia has an infection. The other clue has been some small, but frequent seizures. We had increased her Felbatol and hoped that they would subside as her ears cleared up, but they didn’t. Again, we are now hopeful that we will get that result after the UTI is gone.

So, one afternoon after Jason got home, I went in to the pediatrician’s office with Sophie for a weight check and Lydia’s urine in hand. They are so sweet and accommodating of my hunches, which often pays off. And Miss Sophie is up to 7lbs 11oz, a pound more than her weight check two weeks ago. She’s almost now as big as Lydia was at birth! :o) Our second child is a different experience for us all together. Imagine what humbling experiences I’ll have as a mother of three. It’s frightening to think.

Continued Prayers and Blessings,

Allison

Sunday, November 24, 2002 at 03:17 PM (CST)

We found a downside this week to Lydia not being able to express much of anything. She has a double ear infection, with one burst ear drum, and we had no idea! Sophie has thrush. And Jason and I both have sore throats. We are praying that the girls do not catch what we have! We leave for Mississippi Tuesday to visit my grandparents. We are looking forward to the grand gathering! This will be our first family trip of this distance since Lydia’s birth. What a treat to finally have her stable enough to carry on without worries of being near a children’s hospital!?!?

Our biggest medical concerns this week were actually for our next baby. I had to go to the perinatalogist to calm my OB’s concerns about my PREGNANCY. I had my first ultrasound the week after we brought Sophie home. It looks as though God hasn’t called us to be normal in any way! We learned the bittersweet news that I am carrying twins, but that one of the babies has died. The specialist aforementioned was able to assure us that since this happened in the first trimester, the remaining thriving baby has no more statistical chance of having any complications than one of a normal, singleton pregnancy. He does not consider my pregnancy high risk.

So, I’m now ten weeks pregnant, making me due June 20. Sophie will be 7 ½ months old at that time! We could never have planned our family this way, but are in awe of God’s hand. We were aware of my pregnancy before we adopted Sophie, but after we were certain that God had paved the way for us to adopt our second child. We called our adoption contacts and shared our situation with them. We wanted to limit what we were willing to commit to at that point but asked them to be prayerfully sensitive to any situation that they felt like we should consider. It was a bit overwhelming, but we wanted to remain open to whatever God wanted us to do. Sophie’s situation was EXACTLY what we’d expressed a comfort level for, not near my due date, and not even a stressful time of waiting to see if the birthmother would go through it. When we got the call, it was all up to us. All papers were already signed. Wow!!

We definitely need to sell our house now. :o) We showed it yesterday and feel like it went well. It sure is a challenge to keep it cleaned up and show-ready these days! :o) At least for the most part we are ALL sleeping well. I have said that I knew that God split the sea, but never considered that He could make a newborn sleep at night! Sophie has been averaging an 8-hour stretch at night already (starting at two weeks old!). God sure does provide. Fatigue is the main symptom I have been battling and the sleep is helping.

We have so much to be thankful for this holiday season! Last Thanksgiving we were in Miami Children’s Hospital just after Lydia’s brain surgery. This year we will be eating a full southern dinner in a home with lots of family rather than taking shifts leaving the hospital to hit restaurants including the Piccadilly with their PLAINTAINS. :o) We will also be introducing our new daughter to extended family and showing pictures of the baby to come. Lydia's Decatur "fans" will finally get a chance to meet her. What a difference a year makes!

Romans 11:33, 36
Oh, the depth of the riches and knowledge of God! How unsearchable are His judgements, and His paths beyond tracing out. For from Him and through Him and to Him are all things. To Him be the glory forever.

Continued Prayers and Blessings,

Allison

Sunday, November 10, 2002 at 05:02 PM (CST)

I’m finally here with an update! We are all doing well, but have been a bit busy. I want to share about what’s been going on at our house, but let me start with Lydia.

Lydia is presently more stable than she has ever been. Her brain is no more orderly and her terminal diagnosis hasn’t changed, but we have been able to finally get her to a comfortable point. The ill side effects of her condition and the imminent threat to her life are all presently under control. She hasn’t had a definite, sizable seizure since we’ve come home from the hospital in July! Lydia still cannot hold up her head, roll over or eat by mouth. The only sounds she makes are sighs. Lydia’s expressions are more frequently resembling smiles though and her eyes brighten with them. She basically just hangs out with us, requiring little care. We hold her of course, but she never “asks” to be held and is just as pleasant sitting next to us in her special chair.

Lydia is starting to look even more like a little girl to us. She gets bigger all the time. In anticipation of just how big she will likely be in another six months, we took her to a local physician this week and got approval for several new pieces of equipment. The government will be buying Lydia a wheel chair, special stroller and car seat, as well as larger feeder and bath seats. That is a LOT of expensive equipment. We are so grateful and thrilled at the willingness of the funding! All of this equipment will be taking up a lot of space though, so we are even more eager to sell our house. So far, we’ve had callers but no lookers.

This brings me to my other topic. We have a second reason why it’s getting time to find a bigger house. This week we came home with our NEW BABY GIRL! Sophie Campbell was born on Nov. 1 at 6lbs.8oz, and 21” long. Both of our precious daughters already have miraculous stories, making us such proud parents!

Just eight weeks ago, Jason and I were struck with just how easy Lydia’s care had become. We have long dreamed of having a large family, biological and/or adopted. Our hearts tended in this direction even long before we were married. Needless to say, the pursuit of baby #2 was a difficult thought with such a difficult hospital life-style up until recently. Little did we know how quickly God could and would grant this desire of our hearts.

We were uncertain as to which direction God would lead us at this point in adding to our family. Just two days after uniting our hearts to seek the next child, we received a phone call. About a year and a half ago, we had made an initial inquiry into the adoption process. Our contact was at this time, for the first time, following-up to see if we might be ready to adopt! We couldn’t believe the timing, and easily decided to be faithful to this path God was laying before us.

Each following step fell together more quickly and smoothly than we could have even imagined. Even the details, like our physicals, all scheduled willingly by three different doctors on one-day notice! The state of Georgia deemed us fit to parent (our home study) in a mere three weeks, and we were ready. Even before this completed step, the first of two families who were considering placing their babies for adoption chose us. These two families decided at the last minute to parent, which was quite a roller coaster for us. Now of course, we would have it no other way, because we can see what God ultimately had in store.

Last Sunday, we received the call. Our two-day-old daughter was waiting for us in South Carolina! We frantically got things in order and left the next morning, on my birthday, to meet Sophie. We took her home from the hospital the next day.

Lydia and Sophie are already being good sisters. So far they take turns needing attention, and rarely awaken to the other’s carrying-on. (Of course Sophie does most of that!) The four of us spent time at a friend’s house in South Carolina while the inner-state papers were being processed and were able to come home Thursday.

This baby experience is so different for us even this early. At a week old, Lydia was in the hospital heavily medicated. I think she has a more laid-back personality even before drugs, but the little pistol Sophie already at nine days old amazes us! Someday reality may set in, but at this point we certainly think Sophie is some kind of prodigy having such head control already. We are all enjoying ourselves. Lydia is even getting more attention with all the extra hands around.

Jason’s parents met us as we rolled into town to meet the new addition and my parents drove up from Florida this weekend. Mom will be staying for a few weeks. We are all in awe of yet another tremendous blessing God had bestowed upon our family. We couldn’t be more proud of our two very special girls.

Make sure and check the photo album for the first picture of Lydia and Sophie together!

Continued Prayers and BLESSINGS,

Allison

Thursday, October 17, 2002 at 01:22 PM (CDT)

I have finally been able to get some new pictures uploaded for the page. They are almost a month old now, but definitely worth looking at. Lydia continues to be such a beautiful little girl! Also, note that I changed the email address at the bottom of the page. We are about to shut down the former one.

It’s beautiful here, so crisp and cool! I plan on trying to get us out for a walk this afternoon, sure that Lydia will enjoy being outdoors. If anything, Lydia is a little more pleasant this week. Maybe her Phenobarb level is back up to par now.

I received the good news today that Lydia’s physical therapy has been approved for every week! This was without even having to pull out all of our stops. Thanks for the prayers. I’m excited for Lydia’s benefit. Our present seemingly overwhelming goal for therapy now is head control. This area of development would greatly aid all those that hold Lydia! Right now holding her is physically like holding a large, thirty-pound, water bottle. She is floppy all over! To keep it attainable, we’re shooting for 5 seconds of control to start with. We’ll adjust this pace as we see how Lydia progresses.

We are planning on putting our house up for sale this week, hoping to upgrade to a little more space. It sure is easier lately to keep it clean, since Lydia is so content to just sit in the room with me wherever I’m working. We couldn’t have dreamed of trying to do this back when Lydia was screaming all the time. We are praying that God will guide us and provide both His timing and our future house!

Thanks for your continued thoughts and prayers,

Allison

Thursday, October 10, 2002 at 12:50 PM (CDT)

I’m afraid that the need to keep up with the journal entries keeps slipping my mind! We’re all fine, just quite busy. Jason and I each are attending separate studies during the week on our biblical marital roles. We are taking the inquirers class at the church we’ve been visiting for quite some time now. I have shifted to a nighttime art class. And we have consistently been attending church and “family lunch” on Sundays. Since Lydia’s birth, we’ve had brief periods when we’ve been able to carry off a “normal” schedule like this, but never any extended period of time. Even now, we’ve had to be a little creative, but it’s working. Lydia is so quite and peaceful laying in her stroller that I’ve started taking her along with me to my morning activities. Her grandmother works in their church nursery every week, so for now, Lydia is tagging along with her. It’s nice for both of us to be able to show Lydia off to so many who have been praying for her.

Like old times, Lydia, her grandmother Beth, and myself enjoyed our ladies trip to Savannah last week. A very special purchase was made—Lydia’s big girl bed. And we got to see our favorite neurologist and meet his new nurse in person for the first time. Of course we knew eachother’s voices very well already!?!?! :o) Dr.Pearlman was surprised by how BIG Lydia has gotten. He’s never gone a whole three months without seeing her! She registered just under 30 pounds on the scale and my back believes every pound of it. A plan was devised to continue decreasing the Phenobarb, since the target Felbatol dose has been reached. Other than that, basically he felt like we were back where we were a year ago, trying to balance the tightrope of quality of life, sedating drugs, and development. I reminded him that life for all involved is much easier now, even though it may look similar on paper. Much is this is because quality of present life has risen to the top priority, where development used to be.

For this reason, only a few days after returning home, I had to call Nurse Jennifer back for permission to RAISE the Phenobarbital dose. Lydia started getting twitchier (looking mostly like movement disorder stuff), irritable, and upset at her stomach—not an increase in alertness and enjoyment like hoped for. This means that we may have reached a plateau. We had hoped that we would be able to reach the point where Lydia could resume laughing and playing, but it looks like the movement disorder junk is closer to the surface than these pleasantries that are also being suppressed. Dr.Pearlman is going to support us in getting Lydia’s physical therapy increased to once a week, since she’s tolerating it so well and seeming to benefit from it. The other bit of good news is that we qualify for a handicapped sticker for “Lydia’s” van. I have slightly mixed feelings about this, but certainly can recall times when it would have been very helpful.

We are enjoying a more pleasant Lydia since the dose reversal, as well as the addition of a strong antacid for her tummy. We get occasional upturns of her lips, which we’re calling smiles, but in all honesty, the lack of focus and recognition in her eyes makes the true meaning of the action questionable. At least she looks content though and is still sleeping through the night beautifully. Her new bed is at a great height to ease the strain from my back when taking care of her. And I almost forgot to mention that the bed frame was purchased to fit Lydia’s new air mattress. Lydia’s insurance case manager arranged this mattress purchase. Barbara searched for the best, most expensive mattress that the insurance would pay for to reduce Lydia’s potential for bedsores. It’s quite impressive!

Now I need to get into the kitchen and put up some meat from my first LARGE, organized grocery trip in months. I still haven’t figured out a way to pull that off with Lydia at my side, but Jason got home early yesterday to allow for me to make a solo venture. I can’t remember when I’ve had food in my home for so many pre-planned meals. I have to really work at it to be this organized, but I delight in the results.

Continued prayers and blessings,

Allison

Thursday, September 26, 2002 at 06:19 AM (CDT)

We are finally getting into a nice rhythm of life around here. (Other than updates!) Lydia continues to look pleasant and comfortable much of the time, and we've just increased her felbatol to the target dose. The introduction of this medication has really seemed to make a difference in her quality of life (along with the phenobarb decreases). With yesterday's tweeking of both drugs, we hope to see even more improvement in the next few days.

Next week, we will actually take our first trip to see Lydia's neurologist in Savannah since being home from the hospital. We were indefinitely putting that on hold with her former intolerance of riding in the carseat. Lydia is consistently handling that beautifully now.

She is also seeming to thrive from therapy, physical therapy especially. This brings me to our latest "struggle". Apparently the early intervention office that contracts our therapy, is only eager to decrease services (like we did when Lydia was so miserable in July). They are RESISTING increasing from her current frequency of twice a month. Lydia will get what she needs, even if I have to go through other channels, but it has really frustrated me how hard the process is to get the baby's needs to be provided for. I hate to think about all the little ones who do not have parents with as much information, support, or willingness to fight for the services. So we're fighting, but with sadness and frustration at the system.

I was expecting last week to be a particularly sad one for us. Lydia's birthday is naturally a time of reflection. We certainly had big hopes last year that Lydia's health would be much improved by now, and that she'd be eating cake and even opening her presents. That's obviously not what God had planned, and those thoughts, weighed heavily on me.

We decided to abandon the traditional birthday party and instead planned a couple of meals to share with just a few friends and family. Some time ago, I shared the "Holland Story" here. It parallels what it's like having a special needs child, to going to Holland instead of the exciting, fast-paced trip to Italy you'd planned during your pregnancy. The conclusion of the story is that you have to get past the abrupt change in plans, and make an effort to notice the special attractions where you are.

Therefore, we had a Dutch Dinner Party with other Dutch families to celebrate Lydia's birthday. All were asked to come ready to share some highlights of their destinations. We discussed the special relationships with many that we would never have come in contact with if in Italy. And the new depth of family relationships. One mentioned the new openness and empathy they are able to have for strangers, whom they would have akwardly avoided eye-contact with not too long ago. Joy is never more poingnant than when contrasted with sorrow. Oh how we've come to appreciate that. In my research, I learned that Holland is a portion of the Netherlands, which used to be completely unusable because it was covered in water. With the help of all the beautiful windmills, the water is continually pumped off to make very fertile, livable ground. Among other things, making land great for growing beautiful tulips, one of my favorite flowers.

Holland's slower pace lends residents to taking the time to "smell the roses", or notice the most minute developmental step of progress in your child with bursting pride. Our lives are definitely moving at a slower pace, but God is blessing us with eyes and hearts to find the beauty and contentment in where we are. Between the dinner party, scrapbooking, more smocking, and other projects, I am presently able to piddle in more of my personal interests than ever before. Lydia's care is so simple. It is even presently much easier to enjoy Lydia cuddles, and this time we have with her, as she looks so much more comfortable. For this and much more, we are grateful!

Continued Prayers and Blessings,

Allison

Saturday, September 14, 2002 at 08:05 PM (CDT)

Hello and sorry for the delay. We have been having computer trouble (again).

The good news is that Lydia is doing well. She seems to be wanting more attention. In fact, when she grumbles all she seems to want is attention. She will rub whatever her left hand can reach. One time this evening, while she was having one of her coughing/gagging spells, she stopped when Allison talked to her. Was this a coincidence or is Lydia really going to extremes for attention?

This week Lydia had her g-tube changed for the first time. This is a simple process yet took several hours to complete. Now she has a g-button which is the same on the inside but does not have the length of tube on the outside for a little left hand to grab. We have to use a slightly different process to feed and medicate but nothing that the seasoned veterans will not adjust to quickly.

Tuesday will be Lydia's second birthday. This is an occasion filled with mixed emotions. We are alternately glad to have a relatively happy baby and sad that she isn't healed yet.

I hope that this update finds you all well,
Jason

Tuesday, September 03, 2002 at 03:08 PM (CDT)

It’s been a big week at the Tripp house. Lydia is back to being a good traveler, enjoying several outings in the van! The drug manipulation has begun with a Phenobarb decrease and Felbatol initiation. It will take four weeks to work up to the goal Felbatol dose, but even at the small amount she started on, improvement has already been evident. The day after she started it, was the first in a long time with no irritability, actually even a few possible smiles! It was so nice to see her somewhat pleasant, even while a little less groggy.

Over the past week and a half, I’ve actually oriented 4 different friends on how to use a g-tube (feeding tube). All of these friends were treasured volunteer babysitters, but one is particularly worth mentioning, Lydia’s pediatrician!!! Dr.Anderson called earlier in the week offering her babysitting services and we just couldn’t pass that up. :o) It was humorous though walking her through our techniques. She assured Jason that I wasn’t insulting her intelligence and soaked in every bit of information. I had to assure her that the bath wouldn’t hurt the g-tube, and teach her how to use the feeding pump, just like anyone else. :o) Needless to say, once again, we’re convinced that we have the best pediatrician ever! She was very impressed with how good Lydia looks. Lydia’s color is back to pink and even her breathing is much better. If one didn’t know better, they might look at her and just think she’s really really tired. She looks quite healthy.

The little extra doses of medication I’ve given her lately have actually just been for the purposes of inducing an occasional nap. She’s sleeping through the night regularly now, a very good thing. Along with the outings, like Lydia’s first restaurant experience in MONTHS, we’ve been finding new ways to enjoy our family life. Lydia and I had a spa day. We took a long bubble bath together, then spent the morning leisurely getting ready with good smelling lotions, the HAIR DRYER, and such. We’re taking time to look for practical applications of joy and contentment.

Jason has had a frustrating week, due to dental work. He actually has to get his first root canal this afternoon. So he won’t be eating yet another of my freezer concoctions this evening, but there will be leftovers for tomorrow! My frugal, dentist loathing husband has been doing the math, to figure out if it would be cheaper just to have his teeth pulled rather than continuing with this rate of needed repairs!?!?!? Recently, this is the third of five appointments on the schedule to fix problems. Yuck.

I was just interrupted by another new friend calling to let me know she is back in town and ready to sign up for Lydia care. We are going to have half of Macon g-tube trained before we’re through! :o) Everyone seems to be well oriented with cuddling though, which is still a great way to pass the time with sweet Lydia.

Oh, I almost forgot to report that Lydia has moved up to the next shoe size. This is particularly noteworthy being that this is the second time ever. She is almost two, and only wearing a size three shoe, that is 6-9 months! Why plan on growing room if she’s going to wear them for a year anyway? Our shoe buying requirements are quite different as it is. That’s about all I have to report.

Continued Prayers and Blessings,

Allison

Tuesday, August 27, 2002 at 07:39 PM (CDT)

We’ve brought Lydia’s car seat inside for a few “trial runs” to see how she’d tolerate sitting in it. She’s doing better. Her Phenobarbital was decreased slightly this week and I have noticed subtle, but definite improvement. Lydia has a FEW seconds of head control, and has actually seemed to make eye contact a COUPLE of times. This drug-tweaking plan is a response to Dr.Pearlman’s (neurologist) recent take on Lydia’s prognosis. Based on my phone reports, Lydia is doing much better than he had expected on this level of sedation. He expected her to have more significant respiratory problems by now.

In light of this, Lydia’s life expectancy is even more vague than before. Life expectancy is a definite factor in deciding a care plan. For example, before this summer, we were working with the expectation that Lydia would live to be school-aged. Therefore, we focused heavily on furthering Lydia’s development to it’s maximum potential. This was both for the purpose of allowing her to thrive in a school setting and for the purpose of developing general life enhancing skills (walking, talking, and eating). This involved intense therapies even though Lydia didn’t like it, “for her best interest”. On the other end of the spectrum, when we weren’t expecting her to live through the week, pushing Lydia through therapy just wasn’t appropriate, or to her benefit.

Both of those times, the direction seemed obvious. We didn’t know with certainty that either end would happen, but we thought we did. Now we’re somewhere in the middle, not knowing quite what to do. Lydia still could live only a few more weeks, but if she does live months, and many more than expected, would she be happier if she could interact more? Does she still have the capabilities under the drugs somewhere to clap her hands or bring a toy to her mouth? If so, could we unearth that potential without also exposing the fierce irritability? We don’t know the answers to any of these questions, but we’re willing to try a little drug manipulation as an answer search. We aren’t willing to let Lydia scream for hours like before, and development still won’t be as high a goal as in the past. So, drugs will be given more readily if needed to calm Lydia’s irritability. We are taking it week by week with the thought of decreasing Lydia’s Phenobarbital and eventually adding some Felbatol (a less sedating seizure drug) in it’s place. The goal is quality of life, whatever is still attainable. Will this help? We don’t know, but we feel like we have to try.

I talked to Dr.Pearlman just moments before I was going to call to firm up hospice arrangements. Hospice is supposed to be for patients with less than six-month of life projected. We received a referral back in July, and that still may be Lydia’s timeline, but it is ever obvious that we just don’t know. I need to discuss that with the Care Team to see how that effects things. As I mentioned earlier, the goals can be quite different based upon expectations.

This is just one more example of how God has removed even the illusion that we have any control over our lives, Lydia’s life. Why I have such a desire for knowing what’s next is beyond me. The song plays in my head as I type: “Trust and obey, for there’s no other way, to be happy in Jesus, but to trust and obey!”

Well, my Mother headed back to Florida this morning just as a volunteer arrived to keep Lydia so I could go to Bible study. Another friend will be keeping Lydia so I can go to art tomorrow. We’ll be playing it week by week for a while. I had anticipated Hospice coming through with sitters shortly, but again, I just don’t know how this is going to play out.

The meal theme for the week is clean out the freezer! I enjoyed experimenting in the kitchen this evening with a new recipe using up several frozen items. Of course that means that there were some substitutions involved, but that’s how I cook. :o) I’ve also enjoyed being creative in another area, scrap-booking. After talking to Dr.Pearlman, I was quite fidgety this weekend and needed something to keep my hands and mind busy. Significant progress was actually made on this long ignored project. I look forward to working more on it during some of these potentially quite days with just Lydia and myself in the house again. Lydia’s care is not very physically demanding lately. So, I’m going to try to make the most of my time.

Lydia’s new favorite activity is getting her hair dried with the hair dryer. She will be fussing from getting out of the bathtub, but stops immediately when that warm air hits her head accompanied by that hum. Lydia always has liked white noise, even when loud! In general she’s still Dopey and/or Grumpy, but much prettier and heavier than I would expect a dwarf to be. :o) (You know, Snow White?!?!)

Continued Prayers and Blessings,

Allison

Tuesday, August 20, 2002 at 09:14 PM (CDT)

It has been a fairly uneventful week. The highlight was successfully clearing Lydia’s clogged port-a-cath with a clot busting IV drug. This was most exciting being that I actually did it myself, with a little phone coaching from nurse grandma. Some of you know that Jason’s mom is presently a nurse recruiter (among other things). She has been rallying for me to go back to school for a nursing degree. Her friend offered that I should be able to get an honorary degree. :o) I’ll won’t say never, but for now, I’ve had more nursing experience than ever sought after, and have no intention of pursuing more hours in the medical role. Of course, I’ll do anything I can for Lydia, and was thrilled to be able to meet this need without having to expose her to the "infectious environment" of a doctor’s office.

After such effort to avoid the office, Lydia almost had to go in today. Yesterday she spiked a 104 temperature. It has since come down significantly with the help of some Motrin. This leads us (and our favorite nurse that “happened” to be on call last night) to believe that Lydia probably has a viral bug. One amazing thing is that Lydia did not have a seizure last night. Fever tends to be a significant trigger, as does any illness. She had been twitchier in general for several days leading up to this, but not in the past 24 hours. Lydia is more irritable and sleeping more, partially due to the drug increases to combat the irritability. This actually applies to NIGHTS as well! I think she’s slept all night long for three nights in a row, a recent record!

Jason has also been wiped out. I forget how much starting back to school drains him. For the first couple of weeks he comes home and crashes, maybe getting out of bed for a few minutes to eat dinner before retiring for the evening. Our “dinner service” has finished up for now. I’m looking forward to planning a few meals myself and trying to eat up some of the contents of our stocked freezer. Several people/groups have asked to be called if/when we could use more meals. I still have my mother’s help with Lydia until middle of next week, so I figure this is a great time to ease back into managing more of the kitchen duties.

This morning I started a weekly bible study. After mom leaves I am hoping to be able to continue this as well as my weekly art class. We are looking into whether hospice would be able to provide any respite/babysitting for these times. The decision to transfer to hospice care is becoming more obvious and comfortable, but this would certainly be a clincher. Our latest piece of “medical equipment” is on order. Lydia is supposed to be getting a $5,000 gel mattress pad to prevent bedsores. We are hoping to be able to get it to work with her crib, even though it is sized for a hospital bed. We have been trying out an intermittent air pressure pad for the same purpose, but the gel is supposed to be far superior. One would hope so with that price tag! I am very grateful for insurance, which will be covering the cost in full!

We had fun getting family and friends to guess the amount of the bill from Lydia’s recent month-long Miami ICU stay. Nobody guessed high enough. It was $610,000! We laughed as they requested that we go ahead and pay half, since that would probably be the balance after insurance paid. The same day, we got the long awaited bill from Lydia’s November stay stating a zero balance without us having to pay anything on it. In other words, they will be getting at least eight months to work on that balance before we will worry about it at all! This is only the balance for the Miami hospital charges without any doctors’ fees included. Amazing, huh!?!?!

Another highlight this week was getting to visit with Joshua’s mother on the phone for the first time. Our circle of friends in similar circumstances has grown significantly due to this web page. The support and fellowship that has resulted is invaluable. Even though I am only updating weekly, I still check Lydia’s guest book and several other family’s journals almost daily. Even though I’ve not spent much time in person with them, my love and compassion for them grows all the time. For this I am thankful.

I know that this entry includes little information about Lydia. There just isn't much to report. There has been a little improvement with her breathing due to the new medication to reduce drooling. I would still say that she is continuing to deteriorate, but slowly with a mixed pattern of “one step forward and two steps back”. Thank you for the continued support. I know that the many prayers are sustaining us.

Continued Prayers and Blessings,

Allison

Tuesday, August 13, 2002 at 05:15 PM (CDT)

Lydia’s had a pretty “good” week. Most everything is the same, with the exception of a few small improvements. These improvements include her red spots (early bed sores) fading, the g-tube site healing nicely, no more smelly ear (hopefully meaning no more infection), more frequent restful (long) nights, and lots of cuddling time.

Lydia has been snuggled up with all kinds of relatives including each of her three great-grandparents. Dear friends, Eddie and Charlotte Smith, brought my grandparents here for an overnight trip from Mississippi just to see Miss Lydia. And in honor of Lydia’s cousin’s baptism, Jason’s grandmother came this past weekend from Florida. Lydia has grown a lot since Christmas, the last time she was with her great-grandparents. The eventful weekend also brought Jason’s uncle and his family to Macon, which concluded with a “Lydia visit” and cuddling.

It’s quite a contrast from when we first came home this summer. Then Lydia spent very little time in arms, in line with her “wishes”. Now she spends very little time lying down during the day. It has been brought to my attention that very few babies, much less almost two-year olds, allow cuddling like Lydia does. Of course we’d rather her be running around and playing, but we’ll choose to focus on the blessing in what we’ve been given. Lydia is a joy to hold.

Lydia’s “joy” today has been chewing on her Nana’s finger! Nana has a finger toothbrush on as protection, but even with that, I tell you it takes a special technique to massage Lydia’s gums without getting injured. My fingertips are sore from the mighty chomp I got when I tried to fill in. :o) Lydia has SEVERAL large teeth coming through. She mouths all the time, like she’d love a good carrot stick or steak or something, if only she could swallow them once she chewed them up!?!? You should have heard me trying to explain to a four-year-old friend how Lydia eats. He was watching me plug in her feed to the g-tube. We decided that the tubing was kind-of like a water hose, pouring milk into Lydia’s “extra” belly button that goes to her tummy!?!? Well, at least he was satisfied with the explanation. :o)

Last week I mentioned the labored breathing. Right now, instead of hearing breathing from across the house, I’m hearing her hick-ups! Hick-up, hick-up, sigh! She has taken to much more sighing and grumbling lately, especially after coughing. She’s quite a grumble bug. The difficulty breathing still comes and goes without warning. She is starting a drug today to decrease the drooling. We hope this will allow her to sit up in her seat without choking on saliva. For this reason, we’ve just completely avoided the car seat this week. Maybe she’ll be a bit more mobile if this works.

That’s about all the news I have. As an administrative note, I changed one of the links at the bottom of the page. Don’t fret, you can still check on Mallory through Joshua’s links. Joshua’s health has given his family the “roller coaster ride of their lives” this summer as well, and they therefore update frequently. I wanted you to be able to easily check on them and offer some of the precious encouragement that you’ve offered us.

As I wrap this up, I want to share the words from a song I heard today. It’s a beautiful expression of so many things that I’ve thought, felt, and learned through my journey as Lydia’s mother.

“Not in Trying, But in Trusting”
(I'm deducting that this is the title, but I'm not sure of it.)

Sometimes life seems like words and music,
That can’t quite become a song.
So we cry inside and we try again,
And wonder what could be wrong.
But when we turn to the Lord at the end of ourselves,
Like we’ve done a time or two before
We find His truth is the same as it’s always been
We never will need more.

It’s not in trying, but in trusting
Not in running, but in resting
Not in wondering, but in praying
That we find the strength of the Lord

He’s all we need for our every need
We never need be alone
Still He’ll let us go if we choose to
To live life on our own
Then the only good that will be ever be said
Of the pains we find ourselves in
They are places to gain the wisdom to say
“I’ll never leave Him again.”

It’s not in trying, but in trusting
Not in running, but in resting
Not in wondering, but in praying
That we find the strength of the Lord

It’s not in wondering, but in praying
That we find the strength of the Lord.

Continued Prayers and Blessings,

Allison

Tuesday, August 06, 2002 at 07:51 PM (CDT)

I’m tired. Lydia has slept through the night more than not, due to a dose change. Last night was one of the "nots" though. I was tossing and turning last night and had only gotten slept for about an hour before I heard Lydia wake up. She has always been an endearing noisemaker. For the longest time she would happily hum through nursing, so much fun to hear those sounds of contentment. In contrast, last night it was more like cough, cough, gag, sigh, gasp over and over again. Between her swallowing difficulties, increasing congestion, and her floppy airway (diagnosis from Miami this summer), breathing has become a real challenge for Lydia almost any time she’s awake. You can hear her breathing from across the house! It is even more pronounced than it was last week.

Lydia breathes effortlessly when she’s deep asleep, and I can only guess that it’s because she’s breathing so shallowly. Therefore, we hate to move her and risk rousing her from such a peaceful state. Disturbing her sleep or not, we’re seeing how important it is to consistently turn her for her good. The first signs of bedsores have crept up on us. She already has red spots on one ear, hip and heel. Other than flailing her arms and legs when violently coughing, Lydia just isn’t moving at all. Think about how often you roll over during the night. Lydia isn't rolling at all, or even shifting her weight on her own.

Thinking about setting my alarm through the night to turn her takes me back to the first time we brought Lydia home from a “sick” hospitalization. She was taking eight doses of medications in a 24-hour period. Some were to be given with food, some without, and some were to be given at least 30 minutes apart, etc. The schedule we came home on was around the clock. I had to set the kitchen timer throughout the night to wake me for each next dose, and had to study my chart to figure out what was due. Then it required fully waking the sleeping baby to give it. So, I guess that this really isn’t that bad in comparison.

Noticing that I was sore on the side I’d been laying, I tried just repositioning Lydia at 3:30 this morning when she woke up, but that didn’t help her settle down. After an hour, I pulled out more drugs and we both eventually drifted back off to sleep. I pray that tonight will go more smoothly, as tomorrow will be Jason’s first EARLY day back to school. He’s been doing the pre-planning stuff since last Thursday, but the kids start tomorrow. This means that he’ll get up at 5:30 to have time to make it to Wal-Mart for a Hot Wheels run before arriving at school as the doors open. God really had a sense of humor when he put this early bird together with ME. :o)

I can see God’s provision in that He gave me a strong determination to tackle a challenge. That would be one word you could use to describe Lydia’s medical care. Yesterday, Lydia’s ear smelled foul, drawing my attention. And sure enough, upon further inspection by Granddad with the proper instrument, we learned that she has an outer ear infection brewing.

Her port is due for it’s first monthly flushing since we’ve been home. They trained me on accessing it (putting a needle in with sterile procedure) this summer in the hospital. Actually I did it the last two times inpatient with nurses walking me through it. It’s nice that we have a nurse in the family (Jason’s Mom) to assist and make sure I haven’t forgotten anything.

I can’t believe that we’ve been home a month. There was real question as to whether Lydia would even pull through so we could bring her home from the hospital. We just never know do we? We’re glad to be home with Lydia even though she is continuing to go downhill. She’s still unable to take anything by mouth (all feeds go in through her g-tube), although she loves having her teeth brushed! Jason says that this is a real sign that she’s a girl. :o) We are enjoying her, but it’s breaking our hearts to see her struggle so. She’s been a bit more twitchy lately, although we haven’t yet seen any pronounced seizures. Lydia has lost her “pronounced” muscles as well. The last of activity is resulting in significant atrophy, but I guess that shouldn’t be surprising.

Miscellaneous tidbits:

Jason’s family had a fun vacation. They, as well as my Mom, are now back in Macon. Friday, as the housekeeper was working inside, a teenager came over and mowed our lawn. That same day a friend came over with a host of muffins to stock my freezer with and she left with our dirty laundry. I could have counted that as quite a productive day even if I hadn’t accomplished much myself!!! Meals are still scheduled to come to us through next week (note this makes OVER a month). We have cut back to every-other day though. We’ve had to freeze many of the many wonderful leftovers to keep up with the influx, and I actually even COOKED our favorite brunch items for a supper. Boy it had been a LONG time since I had exerted culinary effort.

Thanks for all the support that is flowing our way. The tremendous help, words of encouragement and prayers are sustaining us and reminding us of God’s love. Thank you! (My thank you note writing has been pitifully neglected since Lydia has been born. Please don’t mistake the lack of a note for lack of appreciation! I hope to get better eventually.)

I’m afraid that I’m too drained to end on words of inspiration this time. It’s not that I’m particularly down, just weary. You know, I’d love to update more often if I had more news and more energy, but this is all I’ve got for you tonight. This gal needs to get to bed! :o)

Continued Prayers and Blessings,

Allison

Tuesday, July 30, 2002 at 09:55 PM (CDT)

I haven’t mentioned lately that my at home goal for updates is weekly. Like therapy changing from six times a week to four times a month, there just isn’t enough to merit the former frequency. No news over the course of a week probably means that not much is going on. I will try to make sure that we report more frequently if that’s not the case. So, now I’ll get on with my update.

Lydia has changed a little, again both negatively and positively. Negatively, Lydia has started waking up faithfully within 30 minutes of the clock turning 2:00am. I merely have to give her more drugs, get her resituated, and crawl back into my bed. But it’s catching up with me quickly, considering my lack of physical reserve. Lydia’s neurologist is on vacation, but hopefully he’ll check in soon and offer a drug change to help Lydia sleep through the night better. It’s hard to know why she’s waking up crying. The nurse asked me if it could be teething, but I somehow doubt such a common answer will explain this behavior, just a few hours after receiving her heavy evening doses of sedatives.

Another normal activity has become difficult. Sitting upright in her car seat makes it hard for Lydia to let her saliva run out. Since she’s not swallowing consistently, she spends most of her time in the car coughing and gagging. Needless to say, we aren’t transporting her much now. Lydia is having a “common” problem with her g-tube. We are starting a prescription cream this evening to combat the swelling and irritation around the scar tissue.

In general Lydia continues to appear to be slowly going downhill. At times her coloring is a bit yellow and her eyelids bluish. If her arm hangs down beside her it turns blue due to poor circulation. For the same reason, her extremities are frequently cold. Along with the swallow reflex, her cough reflex isn’t as active as it should be. She does cough some, but not enough. Her breathing is getting noisier and congested sounding.

Positively, Lydia lost a little weight with a change in formula volume (down to only 18oz a day). Also she has become less defensive and more open to being touched and held. Yesterday Lydia had a moment of what looked like clarity in her eyes. I was greeting her to daylight (at 3:00pm) and she actually focused on me and, are you ready for this, she SMILED!!! It was a little weak and didn’t last long, but I went running out of the house to retrieve Jason. He was able to witness the SECOND smile with me. I ‘m calling it an extra special moment of grace. It was priceless, like the fog cleared for a few seconds, allowing Lydia’s eyes to once again function as windows into her sweet spirit.

Other special blessings have come in very different forms. After getting a chance to go out with Mallory’s parents last weekend, we were able to go to a play with Connor’s parents this weekend. It has been therapeutic to fellowship with other Christian families in similar struggles. God’s provisions amaze me.

Our church attendance has been quite inconsistent since Lydia has been born. That certainly hasn’t affected the support from church bodies and individuals. The church we’ve been visiting just voted to pay for a housekeeper to come once a week, and one of the church families is giving up a day of her help for it to come our way.

We’ve also had some changes in our vehicles, due to generosity of others. We were supposed to be going to Florida this summer for outpatient appointments for Lydia. This was going to involve a long drive in an old car. Days before Lydia went into the hospital, moving up our plans, Jason got a call inviting us to go van shopping. We chose a ’99 Honda Odyssey and it became ours, just like that. Can you say WOW! This put us with four vehicles, so Jason played “Hot Wheels” with them. He traded two of ours for one fun car, a ’93 Nissan 300ZX. I call this red two-seater convertible his crisis car. Not quite mid-life crisis yet, but crisis non the less. :o) We have enjoyed sporting around in it on our more frequent dates.

Leaving the play Friday night, it wouldn’t crank. Grrrrr. But we did have a ride home and the car was easily revived with jumper cables. The computer is also up and running after a rather painless (free) trip to the computer repair store. Yeah! We have been grateful for the laptop we still have on loan from our Florida trip, which has provided us access during our computer’s down times.

I have started back to art class after a break of several YEARS. This has been one of my favorite releases since junior high school, and I’m blessed to be able to resume with my same teacher, a dear friend. My mom is coming this weekend to stay several weeks, so I know I will have babysitting during my classes for a while. Jason has been keeping Lydia so I could go, but he goes back to school THURSDAY! We can’t believe the summer break is gone. He’ll enjoy getting back to a fixed schedule and having something to put his mind to. For now, he’s poured his time and energy into replacing the rails on the front porch and stairs. He’ll be through just in time.

My dad mass-emailed a request recently. My mom needed a ride to Macon from the Atlanta airport this coming Saturday. The last time I talked to her, she already had SIX offers! One of these was from a church secretary in Atlanta, Betty Jo Copeland. Back at the beginning of this journey, we had a need for rides for my mom to and from Egleston Children’s Hospital and where she was sleeping. A friend from Macon picked up the phone and started calling churches in the Egleston area until she found one willing to reach out to our family. Betty Jo provided Mom transportation back then and never actually met Lydia, but has kept up with her through my dad’s emails. It humbles and touches me.

We are certainly faced with suffering and pain, but we are also getting to witness so much goodness and blessing which is a balm. Our life is certainly rich. I’m glad that this journal is pushing me to record so many details so I will be able to look back some day and be reminded of what God has done for us. Like the generosity of Betty Jo, which had slipped deep into my memory.

I have a few more random details to share as I wrap up. I have put some new pictures in the photo album. We'll stick to happier pictures. Next topic, the muscle biopsy done in Miami was sent off to THREE labs. The report is back from the first. It is negative, normal. This test is to complete the question of genetic basis for Lydia’s disorder. Also, Jason’s family (parents, brother and his family) are at Disney World this week. We are glad that they are able to follow through with this long anticipated trip and are praying that they have a great time.

I’m consistently asked how to pray for us. I’m at a bit of a loss, but I’ll give a few ideas. You can pray for rest and continued physical health for Jason and me. I can feel the lack of sleep catching up with me and usually this means getting sick. We will need to start getting to bed much earlier as Jason’s school schedule starts. Also, you can pray for God’s merciful timing in Lydia’s death and/or healing. And our patience, perseverance, and trust in His plan. We don’t have to understand, but trust.

Continued Prayers and Blessings,

Allison

Monday, July 22, 2002 at 08:56 PM (CDT)

The week has been quite full of activity although it has felt like slow motion. My parents decided at the last minute to drive up for an extended weekend from Florida. They babysat Lydia while Jason and I took several opportunities to get out for a while and try to get some balance, some fun. We went on a triple date including dinner, bowling and hot Krispy Kreme doughnuts; had a nice double date for dinner; and even went to church together as a couple.

And it has been fun but all a bit of a blur though. Last night I got up from bed, unable to sleep because my nose was too stuffy to breath as a by-product of a rush of tears. I started to attempt an update. (I didn’t want to lay in the bed staring at the wall at midnight. I might as well be doing something if not sleeping, right?) The computer proceeded to eat Microsoft Word as I pulled up my document. I hardly flinched at this self-attack of the computer; mere days after it’s overnight stay at the computer repair store. It was obvious that neither the repairman’s or Jason’s extensive work and frustration had eradicated the nasty virus. The week had been full of frustrations like this, broken VCR, check engine light, collision of my dad’s car and the lamppost in the front yard.

As it rolled off my back, my emotions untouched, I realize how guarded I was, how little I’ve been “feeling”. It’s not that I’ve been faking anything. But it just hit me how narrow my range of emotions has been lately. No doubt it is a defense mechanism of sorts or maybe a step in the drawn out grief process. This portion of Lydia’s journey is very painful. Yet I have no desire or intention to spend ALL my days weeping. I know that Christ wept, but then he continued on. May God show us the balance of emotions and not let us be ruled by them. Instead I pray that He will continually redirect our focus to Jesus, the Author and Perfecter of our faith.

We’ve been a bit scattered, not knowing quite what to think this week. Lydia’s taken a few steps back and a few steps forward. She’s started having difficulty swallowing resulting in excessive drooling and some aspiration. Every time she starts a coughing bout from breathing saliva, my stomach drops. We’ve also started seeing some twitching, mild seizure-like activity. The isolated incidents don’t mean that the end is imminent, but it is eerie, as if we are in the shadow of death.

This morning we had a meeting to rewrite therapy goals. It’s sobering to face how off the goals were that were written just a couple of months ago. Our signs of success now will be more along the lines of flexibility of joints and no bedsores rather than sitting and standing. So many little things are changing.

In general, Lydia’s body just isn’t working properly. We’ve been significantly diluting her Pediasure formula to adjust caloric intake for her level of inactivity. Still, she’s gained almost four pounds and the goal was to only maintain, not gain. It doesn’t add up, but not much does when it comes to Lydia’s medical needs.

Due to medication adjustments, Lydia has started sleeping through the night. Yeah! This helps us all tremendously. Lydia has also been more awake during the daytime. Thankfully, the irritability has not increased proportionately. It has been manageable. Awake doesn’t necessarily mean alert. It’s hard to see Lydia in her eyes, as beautiful as they still may be. She did actually tolerate a little bit of grandparent holding and loving without too much fussing this weekend. Her preference is still being left alone though.

Mom and I spent time going back and trying to date the volumes of pictures of Lydia. It was a bittersweet task. It’s fun to see the smiles and playtime. I would look at my precious daughter sleeping beside us as we worked. It was scary how difficult it already is to really remember her being able to clap her hands or shake a toy. It made me ache for more chances to see those kinds of miracles, and wish that I had taken more videos.

The week did start on a brighter note. After a much needed haircut for me (the ultimate pick-me-up for a woman), various friends mowed the lawn, painted the back of the house, and cleaned the inside! I couldn’t believe it. Another friend ironed our clothes and dropped them off with a batch of fresh cookies, a nice snack between all the wonderful meals we’re receiving. What amazing support and willingness to serve in the body of Christ. Through the many notes, calls, and visits, others have volunteered in various capacities and will likely be taken up on their offers in the future.

The number of hits on the web page last week overwhelms us (2,000 plus). It also makes us feel very loved, a message that’s coming over loud and clear from so many directions. Thank you for helping to sustain us.

Right now I need a nap for sustenance, or early bedtime. After reporting to Jason about the computer, he held me last night and let me cry until I had my portion. Then we watched Kate and Leopold at 1:00AM. (To those of you as out of the loop as we are, that is a movie of the romantic comedy genre.) It’s just so surreal. But it’s our life. And I will choose to continue to thank God for it, even though I don’t love it sometimes. It only occasionally brings me to tears, to the dismay of most. I do have a husband I adore, and a captivating daughter set apart by God. Even when, if, I don’t have them, I am assured that the blessings will be innumerable. I am a child of God.

I want to end this entry with the words from a beautiful old hymn a friend shared with me.

My Jesus, as Thou Wilt!

My Jesus, as Thou wilt! O may Thy will be mine!
Into Thy hand of love I would my all resign.
Through sorrow or through joy,Conduct me as Thine own;
And help me still to say, “My Lord, Thy will be done.”

My Jesus, as Thou wilt! Though seen through many a tear,
Let not my star of hope Grow dim or disappear.
Since Thou on earth hast wept, And sorrowed oft alone,
If I must weep with Thee, My Lord, Thy will be done.

My Jesus, as Thou wilt! All shall be well for me;
Each changing future scene I gladly trust with Thee.
Straight to my home above I travel calmly on,
And sing, in life or death, “My Lord, Thy will be done.” Amen

Continued Prayers and Blessings,

Allison

Sunday, July 14, 2002 at 08:43 PM (CDT)

I don't know quite how to lead in to this update. Actually little has changed over the past week. But with this entry, I'm going to try to answer some questions that friends and family have asked since we've been home. Don't be offended by the questions. Most of them weren't asked blatantly, but they weren't veiled beyond recognition. They are many though, so bear with me, run to the bathroom before you get started reading, and grab some popcorn on your way back to the computer.


Why have you given up on Lydia's healing?

We are still seeking and praying for Lydia's healing. The new information and medical diagnoses do not point to an earthly healing though. I'm not saying that God's capabilities are any more limited, but His will has not yet been revealed as this type of healing for Lydia. The doors have been shut as far as further medical options, to "cure" her, or even improve her prognosis.


What has changed so quickly?

This change of prognosis hasn't happened that quickly. Maybe I've been overly hopeful in some of the updates, and have not shared the details that have now strung together to present a clear, long-coming picture. Since surgery, Lydia had required less hospital time until recently, meaning that we were able to stop more of her seizures with medications at home. However, the seizures have been more frequent. The biggest pieces that have completed the grim picture though have actually been the non-seizure neurological problems.

You may remember that back in April, Lydia started screaming inconsolably, all day long every day. She was sleeping only at night with the help of medication. The seizures weren't worse, per se, but life was miserable for everyone. This went on for two MONTHS. The hope was that there was an easily treatable cause for the change in her temperament. The finding was nothing of the sort. It was determined that Lydia's brain is just so "mis-wired" that she developed constant neurological irritability from the chaos.

Also, the diagnoses of movement disorder and myoclonic jerks have been added to Lydia's already out-of-control seizures, demonstrating further problems from the general abnormalities. These clues have been there for months, but it took this trip to Miami to decipher them.

Not long before these three new neurological problems became evident, one of the local physicians had told me that Lydia's condition wouldn't be static. He explained that as she continued to grow, her brain would grow and change, becoming either more or less organized. It has become obvious that the latter is the case.

Lydia has never been as sick as she was in Miami recently. And her ever-strong body didn't recover like it had historically. This all led to her ultimate diagnosis, which she received in Savannah, by the physician who knows her best and has always been the MOST hopeful. This diagnosis was terminal neurological disorder.

Just this week, Lydia's physical therapist explained to me that Lydia's posturing (stiff legs and clenched drawn-up fists) is a primitive reflex that comes out because her brain has lost it's natural ability to suppress it.

Lydia's brain is losing the limited ability it had to function.


Have any of the physicians ever figured out why she has seizures and this disorder?

Yes, to a degree. I've come to compare seizures to a fever. They are generally a symptom of an underlying problem. Most of the time, these problems are minor, temporary, and/or easily managed with drugs. But this isn't true in Lydia's case. Her core problem is cortical dysplasia. Early in utero, when Lydia's brain cells were dividing and forming the basic pathways for brain function, they didn't split normally.

Just as in a child with a cleft lip, there is abnormality in the early division of cells that are to form their lip tissue. So, with abnormal formation, also comes the inability for normal function of the affected tissue. Unlike with the cleft lip, reconstructive surgery doesn't work for abnormal brain tissue.

Through extensive testing, it looked as though one main area of Lydia's brain was showing distress and a dysfunctional response (seizures). So they tried to remove the offending tissue, in hopes that an otherwise normal brain could compensate and develop, but instead, we learned from pathology that Lydia's whole brain is affected on a molecular level.

Medical science cannot begin to guess as to the answer to why the cells didn't divide normally in the first place, leading to these manifestations. God was present though, and in Him lies the ultimate answer to why Lydia has seizures and this disorder.


Is this genetic? Will your future children be affected?

As I said above, the cause of the initiation of the abnormal process is a medical mystery. No correlation has been found between cortical dysplasia and genetics, moms drinking or smoking during pregnancy, or any other environmental insult to the unborn baby. And the most irresponsible thing I did as a pregnant mom was occasionally forgetting my vitamin. So, no, they don’t think that Lydia’s brothers or sisters will have any greater likelihood of suffering from this or any other disorder. It is all too much of a pioneer field of science for great certainty though. But noone has absolute assurance of a healthy child.


What about the beautiful happy pictures on the web page? And, how does Lydia look now?

With Lydia's disorder, it's amazing that she's had as many good days as she's had, and as many smiles. Now that the issues are intensifying, it is unlikely that we will see many, if any, more of those enrapturing smiles.

Smiles or not, Lydia's abnormality is internal. Unlike a baby with a cleft lip, Lydia is very normal and perfectly healthy looking. These smiles that you've seen in the pictures have been very few and far between though.

The cameras around here go crazy at every glimpse of an upturned lip and these are the pictures I've been inclined to share on the page. This is how I want Lydia thought of. This is when I feel like we've really seen Lydia peek out through her imperfect body. BUT the reality is that the vast majority of Lydia's life has not been filled with smiles.

Presently, she is sleeping almost all of the time. She actually spent a few hours with open eyes last night, without crying. We were so excited. Even this has become a rarity now. Even without the smiles, she looks quite healthy.

The ketogenic diet did take a few pounds off of Lydia's waistline, but her arms and legs and cheeks are still as chunky as ever. But please see for yourself. I will be changing the pictures on the photo album for now. I am working on posting the more reality-based shots to help everyone understand a little more. I still prefer that the images everyone has of Lydia be that of her smiling and happy, not that of her struggling against her body. So I won't leave them up for long.


What IS the plan?

Because further medical intervention provides no hope for improvement or recovery, Lydia's care plan has changed dramatically over the past few weeks. The focus has shifted to her present comfort rather than more aggressive treatments of the past. We have chosen to subject Lydia to so many painful procedures and side effects, with the hopes of her long-term benefit. Now that the benefits are not there to balance the risks, the decision to continue to subject her to pain and discomfort is no longer reasonable. This resolution has come from much searching, praying, and counsel, both medical and spiritual.

One practical application has been the discontinuation of the ketogenic diet. The ketogenic diet was a last ditch effort to increase seizure control by altering the chemistry of Lydia's blood. This works by the consumption of an extremely strict 85% fat diet. The absence of adequate carbohydrates forces the body to burn fat for energy. A byproduct of burning fat is ketones, which that can be found in the blood and the urine. We were checking Lydia's urine, but very few ketones were present. Her body is under too much stress to even process the fat properly, rendering the diet even more useless, if possible.

Even if she had been able to attain adequate ketosis, and then the diet worked against the odds, this did not offer a cure for Lydia. It wouldn't change her many diagnoses beyond possible help with the seizures.

Therefore, we have decided that the side effects were not worth it. Lydia had been violently heaving as her body was struggling against this difficult to digest formula. Also, she was being kept slightly dehydrated according to diet regulations. These first signs of discomfort and the many possible side effects from longer use, such as kidney stones, are not what we wanted to see Lydia have to endure on top of everything else.

Since the transfer to a "normal" g-tube formula of Pediasure, Lydia hasn't wretched once. We rejoice in this. Now, we can also offer her a "taste" of her favorite foods whenever she looks alert enough. I gave her a few crumbs of pound cake last night. At first she grimaced and started to cry, but upon further consideration, she relaxed and moved the sweet taste around in her mouth. Don't misunderstand. Lydia is not truly eating all of a sudden, but we believe that she did have an enjoyable moment. We now qualify a response of no crying as Lydia liking or enjoying something.

The plan also involves seeking the best combination of drugs to allow Lydia to have some "happy" or quality time. Her daytime Phenobarb doses have been slightly decreased, and we have added some Valium to help keep her comfortable and hopefully make her happier. Her evening doses of medications haven't been holding her through the night. So, Lydia's bedtime Phenobarb has been increased in attempt to keep us all in bed and not crying at 3:30 AM. The details of this drug plan will continue to change based on Lydia's feedback.


What do we expect to happen next? How long does Lydia have left?

Again, we are seeking a drug combo to allow some more good days with Lydia. This may not be a tangible reality, but we have to try. Like we fought for her full health for so long, we will continue to actively work towards her happiness as long as God leaves options open.

Ultimately though, Lydia will likely have another severe seizure cycle that will result in death. She can't survive another coma, which is what it would take to stop it. Please note that it is not necessarily going to be the next seizure, but next progressive cycle.

In the meantime, if Lydia continues to remain completely sedated, pneumonia or another infection due to her bedridden state could cause her death. So, you see, we don't know exactly when one of these events will come. The guess is weeks to months, since we've not yet seen the first seizure or sign of infection. This is the professional, medical prediction. Of course, God could throw us yet another curve ball and take or restore Lydia in a way unimaginable. That of course would be no surprise for Him, just us.


Do you actually believe that it could be God's will for Lydia to suffer so much and die so young?

There have been volumes and volumes of books written to answer questions like this. I'll not try to exhaustively respond here. I don't have it in me.

Also, ultimately no number of words can resolve the answers that you have to wrestle through between you and God. I do want to share a little of what's been revealed to me though in hopes that it will help someone with the process as they struggle through this with us.

You can get into semantics about what God allows and what God causes to happen. If God is as strong as He says He is, it doesn't really matter though. Would you excuse one who is strong from blame if they stood by and watched someone infinitely weaker inflicting suffering on someone? Of course not, because it was still within their control to alter the situation. At the end of the book, Job says to God, "I know you can do all things; no plan of yours can be thwarted." In reverse, we can conclude that God can thwart all of our plans and Satan's, both the far weaker parties.

God allowed Satan to heap much pain and suffering upon Job. But even so, in Job 42:11 it talks about "all the trouble the Lord had BROUGHT upon [Job]."

God also predicted and laid out the plan that included Christ's pain, suffering, and death. And aren't we glad He did for the sake of our salvation?

So, could the will of our loving, caring, Heavenly Father include Lydia's suffering and death? Sure. Do I understand why? Am I able to see it as perfect, good and loving? No, of course not. My perspective and knowledge is still earthly and incomplete. But with the glimpse that I have of God's character, I can say with confidence that He has remained sovereign on His throne over the past twenty-one months of Lydia's life, just like He was during Job's and Christ's.

Not long before we left for Miami, Jason and I heard a pastor share an example to this end. A student was eagerly sharing with him about a specific day from her recent mission trip. She said that the circumstances of the day made it so obvious that God was in control. The mission group had been bicycling and stopped to regroup at the top of a hill. Looking down at the next traffic light, they saw a car run the red light. If the group had not chosen to stop when they did, they would have been in that intersection and hit by the car. The pastor asked the girl if God would have been any less in control if that car had hit them that day.

We are very hesitant to embrace God's sovereignty when faced with tragic, seemingly pointless circumstances. It doesn't mean that God or His power vacillates though. What kind of faith is it that covers only what we think we understand or agree with? It certainly isn't a faith that carries one through storms like ours. There are too many holes in that "boat". It is sure to sink and leave you stranded.

One book that has tremendously helped me through my searching on this subject is “Trusting God Even When Life Hurts” by Jerry Bridges. Bridges writes, "God has not looked the other way or been caught by surprise when adversity strikes us. He is in control of that adversity, directing it to His glory and our good." But even when the circumstances make it difficult to believe this and trust God, it must be an act of our will to do so. "I never feel like trusting God when adversity strikes, but I can choose to do so even when I don't feel like it. That act of the will, though, must be based on belief, and belief must be based on truth. The truth we must believe is that God is sovereign. He carries out His own good purposes without ever being thwarted." During trials, our response as Christians should be "to honor and glorify God by trusting Him…. As we seek God's glory [through trusting Him], we may be sure that He has purposed our good and that He will not be frustrated in fulfilling that purpose."

This is heavy doctrine that honestly I had chosen not to bother frustrating myself with until I had no choice, until my circumstances required it. While wading in this newfound level of trust in God, I've found myself praying like Christ did in the garden. "My Father, if it is possible, may this cup be taken from me [from Lydia]. Yet not as I will, but as You will", Matthew 26:39b.



So, how are Jason and you doing?

Jason and I are learning to adjust to being back at home. Even though Lydia's care is easier than ever before (a sleeping baby is rather low maintenance), we have been exhausted. Just mustering the energy to fulfill our daily household tasks has been difficult.

I know that much of the fatigue comes from the undercurrent of grief and sadness. It isn’t obviously detected on the surface. I get tickled over how everyone comments
that I “sound so good” on the phone. Our voices haven’t changed and we aren’t actively swallowing down sobs with every breath. We are making the best of what we’ve been given,enjoying each day as much as we can.

The tears do come and go, but they are not just for the prospect of Lydia's death. Presently we hurt every time Lydia starts to wake up, and then cries harder as we approach to offer comfort. She used to see us as a source of relief, but she doesn't now. Even when she was on her former screaming crusade, we could at least briefly satisfy her by holding her closely and bouncing or walking.

So, this isn't a time of cuddling and sweetness with Lydia as one might hope for or expect, but God is sustaining us all in His arms.

Instead, I am still spending a considerable amount of time working out Lydia’s medical provisions. We have not yet decided if hospice offers the best services to meet our needs, but they would pay for the new formula cost of $150 a month. (Remember I live with a wise husband that keeps a very tight budget.) :o) I am exploring the other resources available, since we aren't sure we're ready to transfer all supervision of Lydia’s care to hospice yet. This would involve some sacrifices at this point, so we are carefully accessing our options.

Also, while we were out of town, Lydia’s supplemental Medicaid (specifically for extremely special needs kids) was canceled because of a very minor hole in the meticulous reapplication process. After only having to pay for one out-of-pocket drug co-pay, I was thrilled to find the reinstated card in the mail yesterday. I had not wasted ANY time working on that project. This will help tremendously with our in-state expenses. Hopefully we will be able to get the Miami physicians to write off much of the “above reasonable” balances from Lydia's recent stay. That will be a battle for the future that you can certainly add to your prayers.


So, what can you do for us?

I wish I had a good answer for everyone who asked. My creative juices are not plentiful right now, so feel free to stir up yours. If you have an idea, offer it to me and I’ll tell you if it sounds helpful. Meals are now covered through the first week of August!!!! (Thank you everyone!)

Even with that off my list of responsibilities, not much is getting done around the house, or the yard. The dust bunnies and weeds are competing to see which will get to be the largest. Jason is trying to focus what energy he has towards some miscellaneous house projects that have been in the works for a LONG time. But we are moving in slow motion, keeping Lydia fed and medicated, but little else. Hopefully our energy stores will build up soon, but in the meantime, if your spiritual gifts include dusting or cleaning toilets, please give me a call!?!? :o)

Seriously, your prayers are still invaluable. Keep wisdom, peace and mercy on the specifics list and add SLEEP, Lydia smiles, and endurance as well.

I told you this would be long. And I’m sure I left out some of the questions, but I must keep something to write about in the next entry! :o)

Continued Prayers and Blessings,

Allison

Monday, July 08, 2002 at 10:58 PM (CDT)

It has been such a relief to be home! Even the rainy ride here was theraputic, being that it was a “normal” activity. We delighted in it. There was a blowout on the trip, which had to be changed, but it wasn’t a tire. A new diaper and a good plastic bag were involved! :o) But that still didn’t dampen our spirits.

Even on the way home Friday, Lydia spent more time than not twitching, jerking, and moving oddly. But since Saturday, the effects of a dramatic Phenobarb increase have brought her body to a very still, sleepy halt. She literally can’t lift a hand for herself. For the most part this looks peaceful, but when Lydia IS awake, she is pitifully crying. Lydia continues to be defensive from the long “torturous” time spent in the hospital. In response to any touch or even loud voice she cries, unless she is deep enough asleep not to notice. So, seizure-free isn’t meaning absolute comfort at this time. The plan for her care is certainly a work in progress, which we are constantly fine-tuning with Dr.Pearlman’s help. Please continue to pray for wisdom and peace for us as we seek Lydia’s best interest and God’s will in such practical ways.

One practical way we are being embraced by our Macon “family” has been with meals. We went to bed with merely orange juice, milk and bread in our refrigerator last night. Now it contains at least portions of three meals brought to us today, and through a collaborative effort of several churches, our suppers are planned for beyond the next TWO WEEKS! Maybe by then I’ll have all this stuff from our trip unpacked and my house back in order, so I can start the traditional form of meal planning. Let’s just say that organization is not one of my strong suits!?!?! :o)

Between the social and administrative calls, Jason has teased that I might as well have had the phone surgically implanted in my ear today! I had a precious conversation with a dear friend who was diagnosed with cancer while we were gone. She shared with me that with each surgery and treatment, she has held to Lydia for endurance. She decided that if Lydia has been able to endure SO much, she also could handle her trials with God’s help. I grieve to hear of more suffering, but rejoice in the redemptive value of God’s ministry through our little one. Even with this specific example of a friend with cancer, I must add that this is the second one that has shared the exact same thoughts with our family.

On a lighter note, Jason and I took a chance to run an errand yesterday while grandparents were taking their turn doting on Lydia. The saleslady at the store was going on and on about how manipulative her grandson was. She explained that she just can’t tell him no, being that he is a six-year old cancer kid. She hit a sympathetic chord in Jason and he mentioned that we have a child that isn’t even two, and she’s already able to get what she wants with the slightest bit of persuasion. The lady stopped and asked, if we had a cancer child too. I responded “no, she has epilepsy”. The lady almost looked at me cross-eyed. Eventually we realized that she had been talking about cancer as an astrological sign!?!?!?! Needless to say, we got a good laugh out of that one.

We are celebrating any chance to laugh, and to enjoy these rather draining days. God’s blessings through all of this have been so many, it just takes a bit more effort lately to keep the perspective to be able to recognize them. Many are presently seen in the warm love we are being shown by so many. It’s hard to answer the question of what everyone can do, but the thoughts and kind words are still so appreciated. Even though we are continuing to dwell in God’s peace, the day to day is exhausting. I’m grateful that Jason still has a few weeks of summer vacation left for us to rest and support each other. I pray that we will come to even further resolution with our care plan, and a measure of renewed physical and emotional strength before he has to go back. The nutshell prayer can still be for wisdom, peace and mercy though.

Continued Prayers and Blessings,

Allison

Friday, July 05, 2002 at 09:46 PM (CDT)

Guess who's HOME? Yep, it's Jason, Lydia and myself (Allison). We can hardly believe it. The house seems strange. It's been so long (almost six weeks). So much has happened, even in the last few days. Now that I'm back to MY computer, I'll try to get the chance to elaborate soon. Right now I can't wait to get into my OWN bed though.

The short version is that we are home, expected to hook up with hospice in the next few days for terminal care. We are still feeding Lydia the ketogenic diet and heavily medicating her against the seizures, but it is not expected that this will change the outcome.

We are absolutely filled with a "peace that passes understanding". The grief is certainly real, but the joy is as well.

Thank you for your support.

Continued Prayers and Blessings,

Allison

Thursday, July 04, 2002 at 12:11 AM (CDT)

Update by Lisa Hellier for Jason, Allison & Lydia:

Following Monday’s events of a successful transport back to Savannah, weaning completely off of the blood pressure medication (nothing short of miraculous) and being wholeheartedly welcomed with open arms (and beds), Lydia’s sweet return to the South left many of us in awe once again at the little girl with the longest lashes. Tuesday’s good news came again in the form of an easy extubation from the ventilator. While still weak from this last life-threatening coma, Lydia has managed to continue to win and steal hearts amongst the PICU and neurology teams. Allison had more than joyful reunions with technicians, therapists, nurses and doctors that have been lifelines of support during crisis times. As Lydia has weaned off of her last Pentabarb dose, she has sleepily responded with yawns and sighs to the comments in her room as though the hubbub over her presence just simply bores her. Receiving cuddles, hugs and kisses from mom, dad and Grandma Beth have certainly been highlights as well.

So many of us have gratefully thanked God for His mercy and gift of these past days. Today’s news though has been more sobering in light of the aforementioned victories. An EEG is showing continued brain distress and clinically Lydia has had some intermittent seizures, twitches and trembling that concern not only her family but physicians as well. Dr. Pearlman, Lydia’s primary neurologist, has consulted with Allison and Jason about the tenuous position Lydia is in. Against his best hopes, he regrettably believes that the chances for significant and conclusive relief from the brain distress that continues to plague Lydia are diminishing. Another episode of continuous, progressive and prolonged seizures could cause her death. While this is grim news at best, Dr. Pearlman remains a dedicated and supportive member of Lydia’s team. He is continuing to work on a plan for Lydia that will provide her with the best chances of comfort and care.

Jason and Allison have been dedicated in seeking Lydia’s best interests. They have aggressively sought the finest medical minds in regards to Lydia’s diagnosis and treatment. Above all they have committed to God to seek His will and purpose as He reveals it. Their peace that passes understanding resides in God’s sovereignty and love for the child that He has entrusted to their care. As Jason and Allison continue their journey, please pray specifically for wisdom, God’s timing and provision for the days to come.

Tuesday, July 02, 2002 at 12:58 PM (CDT)

Somewhere in Savannah there is a chorus singing "Hallelujah!" I know that all the readers of this page will join me after reading the GOOD news. FYI, I'm Lisa Hellier, a friend of the Tripps writing this entry for Allison. She doesn't have an available phone line currently but she didn't want anyone to wait for the GOOD news after her last admittedly grim post.

Anyway, I know that you're all chomping at the bit for the GOOD news so let me apologize for not being as humorous as Jason or as factual as Allison but certainly as pleased as any and all to report that Miss Lydia has once again befuddled the doctors (we love it when she does that in this type of scenario) and dazzled us all (her growing band of fans) with her turnaround finesse after a particularly grim few days. There is a saying somewhere (probably on a Cracker Barrel t-shirt) that you can take a girl out of the South but you can't take the South out of a girl. Apparently Lydia feels that way too because as she flew to Savannah, under the care of an (and I quote Allison) "incredible" care team out of Egleston, they were able to wean her off of the blood pressure medication entirely! (Praise God! Woo Hoo! Hooray! and other such exclamatory phrases would be a proper response at this point in your reading.)

Allison called me just after midnight to report their safe arrival and when she told me about the successful drug wean I confess that this morning in recalling the conversation I wondered if sleep and dreams had me hearing correctly. Absolutely! She is off the blood pressure medication and very stable. Her intensivist from Miami called to check on her and when told how well she was doing commented that perhaps he should send all of his sick patients on flights!

Additionally, Jason pulled another night shift on the road and was able to arrive SAFELY in Savannah around 3:00 am. Beth, Jason's mom, met Allison and Lydia there at the PICU. They were unable to get into the Ronald McDonald House until today so for the interim, Grandma Beth sat up with Lydia and the PICU staff set up the room beside Lydia for Allison to sleep in. When Jason arrived, they gave him the room beside Allison. So three members of the Tripp family occupied PICU beds last night! :) Let's all hope that they only charge them for one though!

But stay with me, there is still more good news because Lydia's condition has continued to improve throughout today and they are hoping to extubate her this afternoon. Specific prayers for a successful release from the ventilator would be great. Allison has all ready met with the dietician and plans are to continue the ketogenic diet plan.

So there is much rejoicing in Savannah today to be in the midst of a wonderfully supportive ICU and neurology team. Lydia still has a long way to go and Allison and Jason truly appreciate the many sincere prayers and heartfelt expressions of concern. They are all happy to be back in the South and thankful for God's continued provision and protection of their most precious one!

Monday, July 01, 2002 at 04:14 PM (CDT)

I'm pressed for time, so I'll keep this short and expound later.

A big answer to prayer came today in an easy decision to transfer to Savannah. Lydia and I will fly out shortly and Beth will meet us there. Jason has left to drive it. He's going on little sleep, so please pray for travel safety.

Lydia is still very unstable. We continue to wait and see what the outcome of this admission will be. The first Pentabarb decrease was yesterday, yet she is still requiring increases in her blood pressure medication today.

Thank you for your continued prayers.

Allison

Saturday, June 29, 2002 at 08:20 PM (CDT)

This weekend has already been grueling, and it’s only Saturday. In the wee hours Friday morning, Lydia took the elevator ride back to the PICU. Thursday night, we had held off asking for Ativan until her arms had been jerking for a while. It’s just so hard with all of her new diagnoses to decide what to treat, what are real seizures. By the time the Ativan came, it was obvious that Lydia was indeed seizing, and Ativan wasn’t going to stop it. That was the ONLY drug that they felt comfortable administering for this situation on the floor. It took about four hours to get Lydia transferred. That meant hours of progressive seizure activity.

By the time she arrived in the PICU, she was acidotic and struggling to breath. Her heart was racing (220!), and temperature climbing (103). Since Lydia’s stubborn seizure activity was requiring aggressively LARGE doses of Pentabarb, they planned on having to intubate her very quickly, but actually her breathing recovered some as the seizure activity subsided. She was doing all right on a large amount of oxygen, but the seizure activity was returning more and more frequently between doses.

Despite the port, IV access was the hold up in starting Lydia on a Pentabarb drip. It is one of those drugs that doesn’t mix well with just about anything, and would have monopolized the port. Early on, Lydia was requiring continuous Levophed to maintain an adequate blood pressure. Lydia didn’t have time to build up much of a reserve leading up to this event. Her body is obviously weaker than ever before. Therefore, she HAD to have these two medications, which means she required a second line.

Around seven o’clock, the intensivist came in and decided that it was time to induce the next Pentabarb coma, and therefore intubate and start another IV. It took hours of multiple attempts to get the line. The casualty was Lydia’s hair. She looks like she had a side-burn trim that went bad. They shaved spots on both sides of her head up to above her eyebrows. They tried both spots and eventually got one on her scalp. Lydia’s first haircut was for an IV with her first admit. My vanity hates it, but I know that it doesn’t matter.

The plan is to maintain the coma through the rest of the weekend, and possibly start to wean the Pentabarb Monday. At that point, we’ll be looking to see if Lydia pulls out her usual feisty fight, or not. She’s on the smallest amount of Pentabarb ever, as far as coma situations go; yet her body is requiring a higher level of support. With each Pentabarb dose (which usually she wouldn’t have any problems with) Lydia needs her already hefty dose of Levophed doubled for a little while.

As hard as it is to think about Lydia dying, it’s also hard to imagine her continuing to suffer like she has over these past several months. We are asking, is she fighting and needing us to help her or has she reached her limit, needing us let her go. We are praying for wisdom and mercy. The intensivist yesterday presented us a bleak picture and asked us to start considering some decisions that may be in our future regarding Lydia’s care. With every fiber of our beings, we want to honor God and love and protect Lydia through these decisions, whenever the time may come to make them. It’s a bit overwhelming, being that legally, we have “rights” to make some decisions that we believe are God’s and God’s alone. We are searching Him and pleading for His will and timing to be obvious. Everyone has his or her predictions and plans, but we’ve certainly seen how little they can mean. The scriptures I just read in Proverbs state, “Many are the plans in a man’s heart, but it is the Lord’s purpose that prevails... There is no wisdom, no insight, no plan that can succeed against the Lord.” We know that “all the days ordained for [Lydia] were written in [His] book before one of them came to be.” (Ps. 139)

Jason and I are hanging in here pretty well. For now, we’ve decided to for both of us to start staying over night at the hospital. (You know Lydia’s excitement always happens at wee hours.) We are each sleeping some in a room just around the corner from Lydia. Although they’re still not allowing us to sleep in her room, the staff is extending some measure of consideration and leniency for us. The rules here just stink for parents though. For example, right now they’re doing me a “big” favor, letting me stay during shift change hour, but they made Jason leave. That would be one advantage of going back to Georgia. Hopefully by Monday, we’ll have a better idea about whether or not a transfer is appropriate.

We have been discussing, and working with insurance on the POSSIBILITY of returning to Savannah the first of the week. If Lydia recovers, we will need help preparing to manage the keto diet at home. The dietician in Savannah, along with Dr.Pearlman won’t be on vacation next week like everyone here. They would be able to help us with the diet in a setting closer to home. Also, they could carry out the drug plan provided by the neurologist here. Dr.DeRay, Lydia’s fill-in neurologist has provided several additional drug options to try for better seizure control. Phenobarb alone wasn’t able to keep Lydia stable enough to even give the diet a full try.

The first recommendation has already been put into action. There is an Ativan-like drug, Clobazam, which apparently doesn’t have enough moneymaking potential for the FDA to bother putting it through the approval process. Therefore it must be acquired outside the US, and we must give it to her ourselves while in the hospital (rather than the medical staff for liability reasons). A family “just happened to” drop off some that they didn’t need to one of the offices here on Friday. Gratefully, we accepted it and have been giving it since then.

Lydia’s ketones had gotten up to moderate, but are now back to trace. The diet was stopped for a while, and dextrose IV fluids were given when she first became critical. Her ketones should go back up now that she is just on the diet (continuous again) for her “maintance fluids”. The fundo has helped make this possible; because this unit is more cautious than most I’ve seen about feeds because of the risk of aspiration.

Lydia is also fighting a UTI and dramatically fluxuating blood sugar. With the diet, the blood sugar should drift down and stay at a level lower than normal. Until it stabilizes, it will be checked frequently. At least she’s not protesting, not feeling all the sticks. One of our primary goals right now is keeping her comfortable while we wait to see what the days ahead will hold.

Continued Prayers and Blessings,

Allison

Friday, June 28, 2002 at 02:44 AM (CDT)

Jason’s last update has given me a perfect introduction to review Lydia’s life. It has been so long since her journey began. And we’ve picked up many prayer warriors on the way, some of which have never heard how this story began.

Before I start, I’ll share the present news. Tuesday, Lydia’s involuntary movements and irritability came back in full force. I didn’t offer a more specific label for them because no one knows exactly what to call them, and why they make her so unhappy. A couple of long awaited doses of Ativan made a tremendous difference and calmed her. Typically Ativan doesn’t help with her seizures at all, so again, this slants us against labeling this as seizure activity. She now has orders written for Ativan every six hours as needed, but once we get home, they don’t want it used more than once a day. That will be quite a transition since she certainly needs it much more frequently than that right now.

Today’s transition was to the floor. They worked hard to acquire us a private room for Lydia’s maximal rest, so that means we have our OWN bathroom, full sized TV, and twenty-four hour rights to be in Lydia’s room and even eat there. Wow. We even have a full sized hospital bed situated beside her crib so Jason might be able to get a few winks tonight.

Tonight, Lydia is moving to bolus feeds of 3 oz. at a time, eight times a day. They want to slowly reintroduce her tummy to the feeling of getting full and emptying. Her target will be 5 meals a day. So far, she hasn’t thrown any up, but it’s not been for a lack of trying. She’s been retching frequently since yesterday, but the fundo is obviously working (preventing anything from coming up). It just isn’t natural to hear that sound and not need to grab a “catching cloth”.

The keto nurse told me that she’s pushing to get us out of the hospital all together by the beginning of next week. Guess why? Everyone intimately involved with Lydia’s neurological care, except her, left for vacation yesterday. And she’s leaving Wednesday!?!? She figures that there’s no point in us being here to deal with on-call physicians who couldn’t begin to grasp the complexities of Lydia’s case, if we could possibly manage at home. It’s sounds reasonable, since Lydia already has “small ketones” in her urine. The goal will be to have “large”, but we are obviously on the way.



Now, that’s all I have to report, so I’ll go back to the beginning.

I had a blissful, seamless 39 weeks of pregnancy and a perfect 6-hour natural delivery. Other than the typical awe of birth, Lydia’s beginning of life was uneventful until she was six days old. Even looking back with the present knowledge of her diagnosis, it’s hard to know exactly what happened. Our best guess is that she came down with a virus (vomiting, poor appetite, and very little sleeping for all of the irritability). After an undiagnosed generalized seizure and a temperature spike, we took her to the non-pediatric ER and were sent back home with Motrin. We took Lydia to the pediatrician the next day, and talked to her every hour or so with updates, because of her concern. Finally by that evening, Jason decided to take Lydia on in to the hospital.

Our pediatrician was on call (such a blessing) and agreed to admit Lydia for fluids and observation. Thankfully, Dr.Anderson didn’t live far from the hospital. By the time she drove across town and walked into our room, it took one look at Lydia before she started getting a pushy, urgent tone in her voice, instructing the nurses to clear the treatment room immediately so she could start an IV. The intensivist walked into the treatment room to get some supplies at just the right time. It was long after normal hours for Dr.Clark to be there, but again, the timing of Lydia’s needs didn’t surprise God. Dr.Clark and Dr.Anderson ended up having to intubate Lydia and put her on full life support because she was turning blue, in shock. Lydia was in the treatment room for hours, but it seemed like days. Dr.Anderson didn’t know what to tell us other than the fact that we had a very sick baby. Again, an infection was the assumed culprit, but no cultures ever grew. Lydia’s blood was also very acidotic, a ph not compatible with life we were told. Now we know that she gets very acidotic with prolonged seizures. It’s hard to identify seizures in a newborn, with their undeveloped reflexes, so they certainly could have been a substantial part of her troubles that night, without anyone knowing. We were told that the next 48 hours would be critical. Lydia might not live.

48 hours passed as did several more, and Lydia came off of the ventilator and blood pressure and heart rate sustaining meds. She also started to wake up from the sedation and that’s when she started to seize for the first time with physicians present and able to confirm our fears. Still, it was hoped that these seizures were just byproducts of a nasty infection that would subside as she got well. Needless to say, they didn’t, despite starting her on a routine seizure medication and getting a clear MRI. So, on the day we were to go home, we transferred to Egelston Children’s Hospital of Atlanta.

Both in Macon and in Atlanta, Lydia had reams of tests to identify the cause of her seizures. Not even one of them offered any clues. They were all normal, other than the EEG’s, which showed seizures coming from multiple portions of her brain. At this point Lydia’s seizures were still uncontrolled, on two maintance seizure meds. I now know that by the time the second med is needed, the chance of seizure control with medications is very slim. But we weren’t told that then. We were exhausted from weeks of having to have someone awake at bedside all the time to note any possible seizure activity in detailed description (right leg jerked three times and then eyes fluttered and deviated to the left, etc.). The fear of sleeping through the seizures, only to think she was controlled and get home realizing otherwise was overwhelming.

I was also pumping (and would through each hospitalization until a few weeks ago), to provide breast milk to be fed to Lydia via the nasal feeding tube. It was needed because the meds were keeping her too sleepy to eat. Lydia eventually woke up enough that we could coerce her to nurse enough to get rid of the tube and go home. (This battle of poor feeding with medication increases (sleepiness) would become a continuous cycle of putting down feeding tubes at home every few weeks or months until now, when we have the g-tube.)

We weren’t home more than a week when her first drug levels came back. One of the meds was so low, that it was assumed that it must have not been doing anything. It was decreased and the seizures came back in full force along with vomiting, which made keeping down the med once it was restarted, impossible. Many med changes took place over the phone, with each new on-call neurologist. After a steady decline over a few days, we had to take Lydia back to the Medical Center in Macon, and then Atlanta for the second of what would be fifteen hospitalizations over Lydia’s first twenty months.

The picture wasn’t good. We could see it in their faces, but little information was offered to us. There just wasn’t much concrete to share, but they knew. Therapy was started after this admission, as Lydia came home on three anti-seizure drugs. Developmental delay is difficult to diagnose immediately, since newborns don’t do much, but she was now two months old, and the gap between what she was doing and what others of her age were capable of was starting.

At five months old, several hospitalizations later and now on FIVE anti-seizure drugs, Lydia went into her first prolonged seizure that was allowed to go on for five hours. I say allowed, because we were in the Atlanta hospital, under care, from the onset. That evening, Lydia ended up in the first medically induced coma. Part of the reason that it went on for so long (and took a coma to stop), was that the neurologist kept insisting from his phone at home to certain medications should be avoided because their long half-lives would mess up the EEG scheduled for the next day. Those drugs were the only ones that could stop this seizure activity. It was at this point when we changed neurologists, for a variety of reasons. One reason was that we were only being offered one more thing to try to stop the seizures. The drug was one that the FDA had pulled approval of because of the possibility of a nasty side effect, death.

Through Internet research and friends, we knew that there were other “safer” options that we, as parents, had to try first. So, we called John’s Hopkins in desperation, and they referred us to one of their graduates in Savannah, Dr.Pearlman. Dr.Pearlman was a tremendous answer to prayer. Even though his office is as busy as any, he has devoted what it has taken to attentively respond to the almost weekly calls, due to Lydia’s changes and medical developments (most often increased seizure activity). The support that Dr.Pearlman and his staff have provided has been “firefighting” at it’s best, making this tough road much easier along with so many others that are part of our “force”.

Lydia was next implanted with a Vagus Nerve Stimulator at six months old. (If you’re curious see www.cyberonics.com). She has been through several other drug trials, another coma, and was ultimately referred to Miami Children’s Hospital’s world-renowned Pediatric Epilepsy Center for surgical workup. Lydia’s even stumping them though. This brings me to where this web page began, at the pre-surgical workup.

It’s been quite a journey including a total of four comas, two seizure-free periods of six weeks or more, many tears and joyful moments as well. In general, Lydia has actually had more seizure-free days than not, but still the nature (length) of her seizures are considered catastrophic. Lydia’s NORMAL has ranged from a few seizures every couple of weeks to a few a week. But nothing has eliminated or even significantly reduced them, including her brain surgery last November when they removed the back right third of her brain. We have gradually been given license to use more powerful medications at home to stop many of the seizures. So, we only head to the hospital when she is critical (been seizing for hours beyond multiple adult doses of rectal valium).

From the beginning, Lydia’s development has been delayed and has fluctuated greatly with increased medications. She has had a few “bursts” of progress. Her height was when she was approximately six months developmentally at 13 months old. If I were to add up the time, Lydia has spent MONTHS completely sedated and basically her whole life on drugs with sedative side effects. This has been one of the factors in her delays, but it’s been unavoidable. Despite all of these drugs that should have “chilled her”, Lydia has also spent a lot of time inconsolably irritable. The week stretches or even minutes of happy, easy-going Lydia bring us more delight than I can express, but the longing for those times to return is painful.

Lydia’s seizures are not likely to ever be controlled, so the roller coaster will be a constant. The Ketogenic diet has the best odds of anything left to try. Even if it works for the seizures, the fire will not go out completely until Lydia leaves this body behind. Back on May 25th I went into more length about Lydia’s long coming diagnosis and prognosis (see history if you missed it). We’re still learning more and understanding better, day-by-day, although much about this precious child will continue to be a mystery to us until we are able to sit at God’s feet and listen. In the meantime, we have been given the enormous privilege and task to be Lydia’s parents. We see this responsibility as one to demonstrate God’s love to her, partly by seeking the best care and treatment for her quality of life. The blessings and the trials are many, but assurance in God’s sovereignty carries us through.

Whew!!! I’m exhausted. :o)

Continued Blessings and Prayers,

Allison


P.S. (Jason) The fire just melted another gas main. We will soon have more news because after 4+ hours of "seizing" from 10 pm until about 10 minutes ago, Lydia is back in the ICU. She is much more calm, not necessarily still but calm. More later...

Wednesday, June 26, 2002 at 02:39 AM (CDT)

I, Jason, will attempt to cover the material prescribed by the power(s) that be. In this case, the governing body is five foot nothin’, a hundred and nothin’ and yet a force to be reckoned with. The list of news is not very long or involved tonight. Therefore, the court jester has been summoned to entertain the crowd until something of more substance happens.

The first topic for discussion is diet. Lydia is now receiving full strength Ketogenic diet. As you may recall, Lydia’s new diet is mostly fats. I just looked up to see that her diet (hanging on one of her IV poles) has separated and needs some agitating. (I guess whom better to agitate than a math teacher.) Not only does the high fat content necessitate agitation but it can also upset a stomach. To keep her stomach from being upset, Lydia has slowly been worked up to full strength. She has tolerated the change beautifully. On a similar note, since her diet allows very little sugar she is no longer receiving the IV fluids with sugar in them. (The previous IV fluids had some –ose or another.)

Also on the topic of diet, our present routine is for Allison and I to have dinner together between shifts. Even after more than nine years of eating with her, I still wonder just where she puts all that food. It is strange that when Lydia is in the hospital, Allison and I go on more dates. It seems somehow backwards.

The doctors have decided that Lydia should be weaned from her pain medication. It seems appropriate since it has been several days since her surgery (who knows how many because I don’t even know what day it is). When I heard that she had become much more irritable after a dramatic decrease I was concerned but as she lies beside me and snores, I don’t waste any more time worrying. I am happy in knowing that this night’s sleep was not brought to us by some high-powered medicine.

Tomorrow, Lydia may have the settings changed on her stimulator to try to help. If you didn’t already know, she has a device implanted in her chest (now opposite the other device) something akin to a pace maker which sends electricity to her brain. Out of all the people I know, who would have guessed that the one with the chest implants would be my 21-month old daughter.

Since she has been or is nearly weaned from the high-powered medicines and the respirator, she may be able to be transferred to the normal floor tomorrow. There was even mention today of going home possibly next week. We won’t dare get our hopes up but have enjoyed the thought of getting back to our “normal” life.

And now… for the rest of the story…

I want you to know that sitting in the hospital for an extended period of time with your sick child is like being about 947 years old in a nursing home. You desperately want to occupy your time, so as not to sit and watch minutes tick by, but your options are limited. You have lots of ideas for things to pass the time, but you just don’t know how long you are going to be stuck here. It seems wrong to start something you may not be able to finish. You are able to get out for a little while every once in a while but only with the help of others. Your happiness for the whole day is determined by whether the right nurse is on duty. And the worst part is that you really feel that your time spent in the trenches has made you wiser, but the people around you sometimes patronize you. The employees sometimes forget that this is your life and that while they leave when the clock strikes, you are there for an undetermined length of time working every shift, every day. In the back of your head, you worry about just how much this is going to cost whomever is unfortunate enough to get stuck with the bill.

More seriously, I keep seeing reports on the AOL welcome screen about a fire burning in Arizona. I think of a person whose house is burning. Let me try to get into his shoes…

I suppose that I always knew that there was a chance that it could happen but I didn’t worry about it. You cannot worry about such things. I think we were created in such a way that healthy people don’t obsess over all the what-if’s. There are an infinite number of things I don’t worry about each second and that is why I am still able to function. I didn’t have to think about this one until my own house was in flames.

We had planned on buying a house for a while. I had saved and made the appropriate arrangements. My wife and I had agreed that it was the thing to do and had put the plan into action. We checked on the progress every once in a while and the experts told us everything was fine. We were excited for the day when we would walk into our very own house. We knew it came with responsibility and required work but we didn’t imagine how much. We couldn’t have known. One day, we got the call that the house was finished. We proceeded to move in as soon as possible. We hadn’t even been in the house a week when it all started. I was just getting used to the idea of owning a house when the lightning struck.

I will forever be able to call up the memory of that night. Sometimes the memory will be triggered when I least expect it. Usually, it comes when I think of what might have been. As I look at other people building new houses I wonder if any of them going to someday be where I am? What other things might happen to those houses that I cannot even imagine. We have spent many nights in a shelter for people whose houses have been damaged. I couldn’t have sympathized until my house was affected. Not all the houses were burned but we all have something in common. It is depressing and empowering at the same time.

Six days after we moved in, a storm came through and lightning struck our new house. We lost power for a while and even had to relight the pilot light and replace an appliance but we thought it was over. A contractor looked things over and said that although things were bad for a while there, everything was going to return to how it was. We patched the hole in the roof and cleaned away all the limbs and debris. While we were finishing resetting all the clocks, we saw the first flames.

We have been trying to put out the fire for quite a long time now. Our non-professional tools were soon no match for the flames. We were given the tools of the professionals but it still hasn’t ceased the flames. We have been at it so long that we are basically volunteer firemen. We are not officially trained or certified but would be able to provide real assistance to someone else if we get through battling our own blaze.

The real struggle is that something of personal value is being consumed. It is hard to step back and think of containing the fire when your wedding pictures are suffering damage. In some ways, the professional firemen are at an advantage because they can see things in perspective. We know that the present plan is enough to keep the fire from spreading but will it be enough to put it out? Are we going to have a house left when the fires subside? Patience is even more difficult when the heat is intense.

When I read about the fires on the AOL welcome screen, I tend not to pay them much attention. I don’t think it would be healthy for me to worry about all the bad news around me. But quite the opposite, I do not think I should forsake those in need. Fortunately I have a God who is able to take the infinite worries from me and point me toward the small portion of those fires to which my attention would be most beneficial. I pray that you let yourself be led toward those experiencing a fire. Notice that I didn’t say anything about extinguishing the fire. It would be nice to be led to a small fire that you can put an end to, but I know all too well that you may not be able to extinguish the fire. Thankfully, even though fire destroys, I know that fire is an essential part of re-growth. Don’t pity those whom have been burned. They might just come out more pure than they entered.

I am surely not pleading on my own behalf. I most certainly have a fire on my hands by my fire is under control. I have been taken care of beyond my needs and well into my wants. I am saying that be you a firefighter, a generous inn keeper, a hose manufacturer, a hydrant repairman, a house restoration expert, or even the person who demolishes the destroyed home, take care of those whose houses are on fire.

Monday, June 24, 2002 at 06:11 PM (CDT)

As usual, plans aren’t playing out exactly to my expectations, but we’re still making progress. Lydia’s graduated to ¾ strength formula today and a decrease of her IV fluids, but she isn’t a purist yet on the diet. Also, we will probably be in the PICU for a couple more days, because the Fentanyl does require a slow wean as well. She is off of Ativan now, without any tremors.

Actually, since her large Phenobarb dose Saturday, she has done very little twitching of any sort. Hallelujah! After all of the new diagnoses of myoclonus and movement disorder, we didn’t know what to expect for Lydia’s new baseline. I’ve never been a Phenobarb fan, because it makes Lydia so sleepy and hinders her development. Right now, it’s my friend though. The twitching was making her so uncomfortable. It’s such a relief to see her still, and starting to be happy again too!

This afternoon Lydia gave out the first smiles we’ve seen in a LONG time! They are like a salve to the heart and soul. I’ve said it before, but will say it again. The smiles make it ALL worth it. They dilute the memories of the frustrating painful aspects of the journey. They just reenergize us. I know that it would be worth it even if we never received the blessing of smiles, but they make it so much easier.

Over the past few days, Lydia has had several periods of obvious discomfort and pain. We’re trying various remedies, Tylenol, Chloral Hydrate, and Milk of Magnesia to name a few (the first two are now going up the backside because the liquids have sugar in them). The general consensus is that the source is probably not her surgical wounds at this point but no one really knows. It could be simply constipation and tummy cramps as it’s remembering how to work again after so long. Her main pain relief has been coming from the Fentanyl. Now as it’s being weaned we are praying for wisdom in the area of pain management. How many times have we said, “if only she could talk and tell us what she’s feeling”? But we know that God knows.

This journey has certainly given us much opportunity to practice contentment whatever the circumstances and unwavering joy. I’m not saying we’ve mastered it yet, but I am thankful for the growth we’ve seen God work in our lives. The importance of fixing our eyes on Christ and being bathed in scripture was recently brought back to my attention as I was reading a Christian novel. I came across a fictional sermon excerpt that spoke to me beautifully. It read, “All of life’s circumstances must be viewed through Christ, or we are going to spend our lives on an emotional roller coaster. Believing that God cares for us only when all is comfortable in our world makes for a shaky foundation, my friend. God’s Word has to be our base. When it is, nothing, and I mean positively nothing, can cause the ground beneath us to shift.”

This brings me to think about one of the aspects of amazing support that you, our wide circle of friends and family have provided for us. We often mention how much the messages you leave touch us. And oh do they, but also the scripture is so helpful. This morning as I turned on the computer, sure enough, there were scriptures left in a note for us to read in the guest book. Even when it’s ones that we’ve read a million times, God’s word continues to bless us so. Thank you and please continue to gird us up in this way.

Continued prayers and blessings,

Allison

Sunday, June 23, 2002 at 11:07 AM (CDT)

Drum roll please! I would like to announce that Lydia has officially begun the Ketogenic diet (well, kind of, sort of). :o) Monday will be the true, strict version including no more IV fluids with sugar in them, but for now we’ll take any progression as reason to celebrate. Lydia has been on the watered down Ketogenic formula for 24 hours now with no apparent discomfort or inappropriate returning of the food by her body (vomiting/diarrhea). The vomiting is less likely now with the fundo, but it could happen. We are glad to report that Lydia’s fundo, although obviously helping isn’t so tight that she can’t burp. We were going to miss that! :o)

Jason is taking to the night shift well. It’s occurred to me that staying up all night has not been something he’s ever done much of. Of course Lydia’s disturbed him a few times at home, but schoolwork was never so important to him to deem an overnighter and I can’t imagine that he’s ever had so many words to drive him to stay up even at a sleep over. So this is a different experience. He passed his time last night by figuring out and graphing the formula to explain why the peak concentration of drugs is reached in the blood after the drug’s fifth half-life. At least it entertains him, right? :o)

His first shift was frustrating. Lydia didn’t sleep all night, twitching/involuntarily moving/seizing (whatever you want to call it) and looking quite uncomfortable most of the time. Last night was a breeze though. She slept all night comfortably after getting a big dose of Phenobarb earlier to boost her level.

Along with sleeping again, Lydia is back to being consolable by holding and rocking. She had gotten so defensive that she cried EVERY time ANYONE touched her for any reason. We haven’t completely won back her trust yet, but at least once she gets comfortable in arms, she will now cuddle up and relax.

We are relaxing now as well after multiple negative blood cultures and a normal white blood count. Lydia will continue taking an antibiotic for a few days to eliminate strep throat. This type of infection is much less concerning.

The newest concern is Lydia’s weight. Can you believe that she’s GAINED since we’ve been here, only taking nutrients by IV!?!?! At 27lbs, she’s now two lbs heavier. The most successful “keto kids” are skinny ones though, so the dietician wants Lydia to loose down to around 23 lbs. Once the true diet starts, this should happen “naturally”.

Lydia’s Ativan and Fentanyl drips are the main things keeping us from going to the floor. The former is scheduled to complete it’s wean by tomorrow, and I need to ask about whether the latter requires a weaning process or not. The floor will be much better because someone can SLEEP at Lydia’s bedside and there aren’t hours when parents are required to leave like there are in this PICU. We are looking forward to it. Although it’s still a hospital room, it’s one step closer to feeling like home.

Continued prayers and blessings,

Allison

Friday, June 21, 2002 at 05:27 PM (CDT)

Today’s news seems to be fairly positive. Upon second thought, today’s “fairly positive” news looks even better when compared to frustrating and angering news of not so long ago. Lydia has been extibated and is breathing just fine on her own without the rattles or gasps of last week. She has not needed the assistance (treatments, oxygen, etc.) that she needed last time. Allison wants me to emphasize just how “fantastically” she is doing without the respirator. Since the previous problems were supposedly caused by reflux the fundo must have been successful at stopping the reflux.

Lydia is not presently seizing but is doing something that I will call trembling. We are assuming/hoping that this is withdrawal from one of her high-powered medicines and will fade away on its own. Lydia is quite the drug addict. I have always maintained that Lydia will never be able to get high on an allowance from a teacher’s salary. (She will have to be taught to get a high from automobiles like her father.) Maybe, if we play our cards right, she can win her way into the heart of someone who is dying to unload a chrome bumpered, orange Corvette. Those are, after all, her favorite (or at least she has never disagreed).

Lydia will be starting with pedialyte today and 50/50 keto-diet/water tomorrow. The keto-diet has a very high fat content which the doctors need to make sure Lydia will tolerate. Obviously they do not realize how much Lydia’s breastfeeding mother has enjoyed desserts (especially Krispy Kreme) over the last year and a half. Hopefully, if she tolerates all of this well, she can start a higher percentage keto-diet Monday.

I don’t think that Allison has had one argument today over Lydia’s care. She (Allison) seems to be in good spirits. She is smocking away on a dress for Lydia. She has all the hospital staff convinced she is a needle work veteran after having only taken one class shortly before our medical adventure of a summer began. Jackie is tiring of the night shift so I have graciously volunteered (shameless self-promotion) to sit with Lydia tonight. After re-reading that thought I decided I must go try to take a nap.

We are eagerly awaiting the end of this struggle but trying not to get our hopes up too high. We continue to enjoy the guestbook and the ever growing hit counter. Thanks again for your prayers and support.

Jason

Thursday, June 20, 2002 at 10:43 AM (CDT)

Thank you God! Everything was completed in surgery yesterday. The fundo was done "open" so Lydia has a vertical incision on her abdomen that needs to heal. The bronch, g-tube, and muscle biopsy were also done perfectly according to plan. The issue with the port, was that after it was in place on the right side and secured, the vein would not cooperate with being threaded. So, the surgeon decided to just thread under her skin, across her chest and into the opposite vein. This was a better option than starting over. One reason was that Lydia's stimulator takes up too much space on her left, not allowing enough space for the actual port access on that side. This meant that surgery took approximately an hour longer, but now, it's no big deal.

They follow-up plan, on the other hand, is once again more complicated than initially thought. The reason Lydia is supposed to be kept on the vent and sedated for a few days is to give her windpipe a chance to heal. The scope showed a lot of swelling. This is excellent, because Lydia therefore didn’t need a trach. Yeah!!!!!!! It appeared that the cause of much of the swelling was the acid from reflux. Keeping Lydia on the vent for a few days, now that the fundo should prevent the reflux, will hopefully give the swelling time to go down. Lydia’s breathing should therefore be less labored when the time comes to take out the breathing tube.

The complicated part of this plan is keeping her SEDATED. If she is awake and moving, then the tube will irritate her throat and cause MORE swelling, defeating the plan. Finding a drug that can sedate her with a reasonable dose is a panacea though. When I was getting ready to leave Mom here last night, Lydia was only on the same drip dose of Ativan as she had been before surgery. The plan was to increase it IF they needed to once the surgery sedation wore off. Despite the additional pain medication that was being given along with the Ativan, Lydia was crying tears, moving, and seizing. I had great concern about the night’s potential outcome.

I was able to persuade the fellow to increase both the Ativan and Fentanyl (pain med) as well as start giving Pentabarb doses until the seizure stopped. Even on the increased level of Ativan, I don’t think Lydia would have remained sedated. We didn’t have to find out though because she seized every three hours, requiring a lot of Pentabarb, which sedated her between seizures. By morning, Lydia’s blood pressure has dropped too low due to all of the Pentabarb (and Ativan). So, that’s being addressed and is incentive for them to be more reluctant in seizure treatment. Grrrrr.

Yesterday, Lydia’s white blood cell count was elevated, indicating that she might be fighting an infection. Sure enough, today, a blood culture from yesterday came back positive. The ideal course of action, along with continued antibiotics, is to remove the infected femoral line from Lydia’s leg. The problem with this is, she’s receiving too many things IV that don’t mix. The port is currently being used, but cannot accommodate everything. SO, they plan to try again to get an additional line. There is only reason that the odds are any greater for success with this attempt. The surgeon has recommended that they use an ultrasound to pinpoint the blood flow (vein) before the sticking starts. (Beth had just phoned me with statistics from a study done in Macon supporting this technique.)

For now, Lydia is sleeping calmly, but not deeply enough not to respond to touch. The neurologist has requested another EEG to be done the next time we see a seizure start. He has also decided to break down and start Lydia on some maintance Phenobarb, in hopes that we can get away from using as much Pentabarb. The Ativan is to be weaned over a couple of days, because he doesn’t think it’s really sedating her, but she can get addicted to it, causing more problems. So, my next question is, what will be given in place of the Ativan for sedation? If they aren’t willing to give anything else in a big enough dose, then we may have to push for plan B. I assume that this would include focusing on getting Lydia extibated sooner, rather than risking further trauma from being on the vent while not sedated sufficiently.

It’s just all so complicated. The first positive from having the g-tube has been getting the feeding tube out of Lydia’s nose (and throat). I was tired of seeing that thing pulling at her nose and the tape tearing her face. She looks much better without it. When Jason gets the willies thinking about the g-tube, I keep reminding him that we will no longer have to battle with Lydia to get her to swallow her medicines. It sounds dreamy. :o)

As crazy as it sounds, even though Lydia’s not completely out, her gut and bowels still are. They will have to be functioning reasonably before the keto diet is started. So, as usual, the time frame is quite fuzzy. Please pray that we continue to make progress towards the end of this hospitalization, which is our longest continuous stretch to date. Also, pray that this infection is resolved without further complications. One of these possibilities could even include having to remove the port, if it were to become infected as well and resistant to treatment. My other specific request for prayer is that Lydia’s pain management is effective and is not needed for long.

Continued Prayers and Blessings,

Allison

I just read the many sweet notes in the guest book reporting prayers for Lydia and support for us. They brought tears to my eyes. Thank you.

Wednesday, June 19, 2002 at 12:40 PM (CDT)

Keep reading.. it has been updated!

You just never know what 4:45PM really means when you’re talking about a surgery schedule. :o) Lydia actually has gone EARLY. She was just wheeled off into the OR. The surgery will take approximately three hours, four when you count prep and recovery.

I’ll post when she is finished. (It's not quite 2:00PM here, so that means it should be at least 6:00PM.)

Excited but prayerful,

Allison


Mere lines later but hours later in real time...

Lydia is out of surgery. It went nearly uneventfully. The port had to be implanted a little differently than usual but nothing more than one extra incision. She is asleep in her PICU room where she was before. She is supposed to be sedated and on the respirator for 2-3 days depending on who you ask. The port is immediately accessible and the g-tube must wait 24 hours. We are now going to be able to try to do something about seizures and go home! Finally a light at the end of the tunnel.

Jason

Tuesday, June 18, 2002 at 09:56 PM (CDT)

Lydia is actually printed on the surgery schedule for 4:45PM tomorrow. Of course this time is approximate, to be translated more like 7:00PM, but it SOUNDS like a definite. The nurse supervisor made sure I was sitting before she told me the news. :o)

Lydia is breathing much more easily today. She has graduated off of the helium and oxygen mask to merely a little oxygen in her nose. For a variety of reasons, they have opted to continue holding Lydia’s feeds, so she’s hungry and now more awake. It’s been a miserable day for her, crying lots. I hooked up a pacifier to her straps from the oxygen mask and she was going to town on it when I left (do not try this at home without having baby on a vitals monitor). :o) The resident promised me that she will make sure Lydia gets some sleep tonight even if that means giving her some Chloral Hydrate.

Chloral Hydrate has given us some problems lately. Up until yesterday, Lydia was receiving Pentabarb occasionally to help with the withdraw tremors. Every once in a while, though, a different fellow or resident would be around and decide to try a little Valium, a little Pentabarb, THEN a lot of Chloral Hydrate. The combination every time ended up making Lydia’s blood pressure hit the floor. She was on blood pressure medicine for a while because of it.

Last night I explained the problem with the “variety” approach and she received just Pentabarb for the first definite seizure since coming out of the coma. Later in the night, Beth had to wage a full-blown war with the staff to get any drugs for Lydia. Lydia was jerking with most of her body for over an hour while holding her breath, grunting, and crying out alternately. Possibly merely due to all the breath holding, Lydia was getting acidotic, which is one of the main aspects of prolonged seizures that make them so serious. The bottom line was, seizure or not, she needed to get some relief.

It eventually happened, and then we all had a meeting this morning to get a more livable plan. Neurology had decided that the Pentabarb should be avoided if it was ever going to get out of Lydia’s system. This is why the night had been such an ordeal. The problem last night was that Lydia was going down hill and the plan didn't make accommodations for that. The same nurse was on that had been there last time Lydia went down hill and ended up on the ventilator due to slow drug administration. Before it was all over, the nurse threatened to quit if Lydia didn’t get treated. Much screaming, crying and nashing of teeth occured.

Today’s meeting was resolved by deciding that Lydia’s myoclonic jerks and seizures (not tremors) WILL be treated, sooner rather than later, with smaller incremental doses of PENTABARB, in hopes to keep Lydia more comfortable and to avoid getting so far gone to require another coma. This plan is to get us through until surgery, and, all from the meeting are praying, begging, that this diet is going to work as the next plan.

So, if the surgery happens tomorrow, then the diet should start by the end of the week. The nurse supervisor teased me today. She said that the whole surgery delay has just been a big conspiracy to keep us around for the improvements we're getting done. They moved us to a different bed today, and we’ve spent the day pointing out previously unreported problems and getting them fixed. The hospital is also supposed to be ordering some feeder seats (special needs “chairs”) tomorrow. I finally reported the need to the right person today. It feels good to be accomplishing something.

Beth and I made great smocking progress before she and John left today. They have made it home safely, with mixed feelings. They’re glad to be home, but wanted to take us all back with them. They will be resting up (and going to work) in case we need them to return later. So, my Mother is back on night shifts for now. I think back to the early days of Lydia’s hospitalizations and remember how I NEVER left her bedside except to shower and go to the bathroom. I’m grateful for the family support that is making it possible for me to leave the hospital to sleep now that I’m will to.

Keep praying that surgery will happen tomorrow and that the surgeon will have wisdom and precision of hand. Also, pray about the broncioscopy and the trach decision we will have to make based on the results. We are at peace, even with all the craziness. It has really helped that in general, the staff has been phenomenal this past week and a half. We’ve finally developed some mutual respect that is making the days and nights so much easier. It is a huge blessing, and such a change from the first week here. As mentioned earlier, there are still rocky times, but they are now much less. We are developing relationships and having an impact, on the medical staff as well as the maintance to do list. :o) (It also doesn't hurt that the fellow that told me to take Lydia home in restraints for a year is moving to another state tomorrow.)

Continued Prayers and Blessings,

Allison

Monday, June 17, 2002 at 06:20 PM (CDT)

Allison is in no mood to type so I (Jason) will try to convey the main idea.

We just received word that Lydia’s surgery will not be today. Furthermore, the news is that she is not going to have surgery until at least Wednesday. We are not in very good spirits at all right now because we feel we have been left to the side somewhere on someone’s to do list. We came to Miami three weeks ago specifically for surgery and it is not done yet. For that matter, Lydia is not even on the schedule.

Top Ten (or so) things that are frustrating about this postponed surgery:

10 –
Lydia has gone without food multiple times for many hours in anticipation of what would each time turn out to be false hope.

(93 divided by 10) –
We could be back in Georgia where sweet tea isn’t a foreign phrase.

9 –
She had enough of a bout of seizures to require an induced coma last weekend.

(34 fourths) –
I would not have had to go through so many drive-thru’s for lunch. “So you want a bllwkneht and fries and two einasldhineht with no aowiehtrlwekn?”

8 –
Mom and Dad (John and Beth, disrespectively) came to Miami to be here for her surgery and her recovery and are leaving tomorrow without either having been accomplished and a week of work to catch up on when they return.

(Sqr root of 53) –
I wouldn’t be missing all these days of work. Oh… that’s right… I’m off for the summer! Scratch that one.

7 –
Lydia’s next seizure control plan requires the g-tube portion of the surgery. Therefore we cannot continue our search for seizure control until this surgery is completed.

6 –
She got an infection in her IV while waiting for this surgery (this postponed it one of the times).

5 –
She might not have been intubated which caused the irritation that will now add another phase to her surgery.

(first derivative of 4.43x) –
I am beginning to understand the difference between a resident, a fellow, and an attending. And I agree that they should be practicing.

4 –
She might not have received the high doses of Pentabarb which seem to be causing her to have withdrawal symptoms now.

3 –
We will most likely have to fight with the insurance company over three weeks of ICU room fees for no apparent reason and over an $8000 rushed medical flight from Savannah to Miami just to wait for three weeks for the next step.

2 –
Ideally, Lydia would have long since had her week of supervised keto-diet and we would have been home by now.

(number of days of Christmas divided by the number of reindeer) –
I would not have purchased this confounded gameboy which is slowly but surely destroying my ability to drive the car without thinking of launching missles or pushing someone off the road.

1 –
Lydia would not have been stuck in the same hospital bed shifting from sleep to discomfort and back.


I suppose that our request is that you pray for patience and wisdom for Lydia’s caregivers, for peace and contentment for Lydia, and for someone to light a fire under the people who apparently have not felt the heat yet. (It is unfortunate that the gas prices are so much higher here in Miami.) We appreciate your continued prayers and support.

Monday, June 17, 2002 at 09:31 AM (CDT)

Today MAY be a big day. Lydia is listed as an ad-on for surgery, pending negative cultures. The cultures from the 14th are negative, so there is expectation that theses last ones should be as well. Yesterday was rather uneventful. Lydia’s breathing is improving slightly. She appears overall more comfortable, but is still very squeaky. Her breathing is still more labored than we would like.

The intensivist today had a very likely explanation as to why Lydia’s having trouble breathing and therefore why she might need a trach. Tracheolmalacia is a term that we didn’t understand well when the Pulmonologist offered it. This is a general term covering poor development of the trachea. The concern is poor muscle tone that doesn’t provide a firm, wide-open pathway for Lydia to breath through, especially when traumatized so many times by intubations. I am well aware that Lydia’s overall muscle-tone is very low, so it would be a stretch to assume that these muscles are any different.

The intensivist told us that he expects that a trach will be in Lydia’s future, due to her chronic problems that are not significantly improving. To him, it is an obvious step in the progression of accepting the frequency and nature of Lydia’s needs, and would make her management easier. He couldn’t decide if we are at that point YET or not, but was interested to see what the results of the scope would be.

One other small procedure will take place during surgery. The Geneticist has requested a muscle biopsy. This is the only piece missing from Lydia’s initial genetic work-up in Atlanta during her first hospitalization. Every other test came back perfectly normal, but it doesn’t hurt to continue to look for a medical explanation behind Lydia’s cortical dysplasia (the base diagnosis of abnormal brain development).

We are eager to get this show going. To pass his time, Jason has taken up collecting Muscle Machines, another category of small model cars. His Hot Wheels collection is still under way, but he was getting bored waiting for cars that he doesn’t have to appear in stores. So, he will be eager to get the computer and start cataloging his new collection. It’s a wonder this hyper-organized man can live with me peacefully. :o)

This might also be a big day for us in that Pat, the epilepsy nurse, is taking up our cause in getting some bills pardoned. As I’ve mentioned before, many of the physician’s groups here in Miami are not in network for our insurance. This means that even though our insurance has graciously paid 100% of reasonable towards these bills, they expect us to pay the balances. Normally these amounts would be written off. Pat said that she’d go around and tell everyone that they might as well excuse the balances because she has told us not to pay them. :o) It’s always good to have a powerful woman on your side.

I will post again today if Lydia goes into surgery. Thanks again for the prayers.

Continued Blessings,

Allison

Saturday, June 15, 2002 at 05:29 PM (CDT)

Lydia’s breathing tube was removed late last night. She is requiring frequent breathing treatments for her stridor (noisy, labored breathing). Another measure being taken to treat this has been putting her on a mask with 60% helium and 40% oxygen. Also, steroids have been started and a pulmonary consult was ordered. The pulmonologist had some very unexpected news.

During the surgery, whenever that happens, he will perform a bronchoscopy on Lydia. This procedure involves looking down into Lydia’s windpipe to determine the cause for the exaggerated problems after the last several extubations. The cause could simply be swelling, aggravated by caustic acid from reflux, which would be expected to resolve itself after the fundo, etc. Alternatively, the cause could be a physical anomaly. She could have an unusually small windpipe, or portions of thick tissue in her windpipe, that make any swelling, a more serious problem for her. If the later is the cause, he wanted to warn us that he might would be recommending a tracheostomy be preformed as an add on to surgery.

A “trach” is a tube that comes out of the throat, which is used instead of the mouth and nose to breath. It can be hooked to a ventilator, but in Lydia’s case, that’s not what we’re talking about. Jason chimed in that we all should know the procedure from watching E.R. You know, they use a pocketknife to make the incision and stick in an empty pen casing, or any other available cylinder. But seriously, this blew me over.

As a mother, I will always love my child immensely, no matter what problems, or what she looks like. But, on a practical level, I know how freaked out even I can get around some special needs kids or adults. It’s hard to think about Lydia looking more and more abnormal with all of these devices along with the growing gap from normal with her development.

It’s hard partly because I want Lydia to be loved and accepted by more than just family. I know that she is, just because of all the people who read this, but that still doesn’t mean that everyone will be comfortable around her. I guess that’s just life. It brings tears to my eyes now as I remember having this conversation with a dear friend. She helped me see a beautiful, but humbling analogy. Without Christ, our sinfulness, and inadequacies, make us very unlovely, yet while we were STILL sinners Christ died for us. Even more than a human parent’s, His love for us is unwavering. Grasping an inkling more of and idea of the vastness of that love certainly helps in times like these.

Back to Lydia, she received some blood yesterday because she had gotten anemic from all of the frequent blood draws for labs. We didn’t have enough notice to make directed donations and have them processed. Several of us went ahead and donated yesterday, so she can have some waiting for her if she needs it after surgery. There was surprise at how quickly the blood was delivered after the order had been written.

I hadn’t considered that there could be a delay due to shortages. We’ve all heard about them, but I’d never internalized the concept. As it was, they didn’t have any appropriate A positive blood, which is Lydia type, but she could receive O positive instead. I’ll take this chance to offer a plug. Please, go donate blood if you can, as often as you can. How heartbreaking it would have been to have them come back and tell me that Lydia would just have to wait and get weaker because it wasn’t available. I hate to think of anyone having that experience during an already difficult time, yet I know it must happen often.

Lydia’s hemoglobin was up to normal this morning, so her heart doesn’t have to beat as quickly to send the blood around. She can refocus that energy on getting well. The last cultures are clear so far, but Lydia is still having a fever off and on. We are using occasional doses of Chloral Hydrate, Pentabarb, Tylenol and Motrin to keep her as comfortable as possible. Even when she is sleeping she has quite a loud “snore”, but she is obviously less agitated with that breathing tube out. The EEG was also taken off yesterday, after seeing NO seizures or even epileptic spikes for days. This is amazing especially in light of her the fact that she’s sick.

I’ve had the joy of holding her today for the first time in over a week. It did this mother’s heart good. I forget how heavy she is though. Certainly she must have lost some weight over the past few weeks, but today they started feeding her again with the ND tube. For now it’s only a TEASPOON an hour of Pedialyte, but hopefully that should increase and change to something more substantial soon.

The patient representative who helped me a while back stopped me in the hall today for an update. Maria reminded me that we are supposed to pray SPECIFICALLY. For Lydia she told me to focus on praying for her to QUICKLY get well and be scheduled for surgery. Sounds good to me. Our friends the Avera’s just had a precious experience of some specific prayers that were answered affirmatively. They are the family that I had mentioned whose son was to start the Keto diet with Dr.Pearlman this week in Savannah. I’ll put a link to Connor’s page on the bottom of this site.

Continued Prayers and Blessings,

Allison

Friday, June 14, 2002 at 10:06 AM (CDT)

Lydia is doing quite well. She is now off of the Pentabarb drip, waking up, and is set to be extibated today. She is on an Ativan drip and receiving occasional doses of Pentabarb to help step her down. This decision was made due to her agitation, NOT due to seizure activity. Neurologically, this is the best I’ve ever seen her do in this situation. Her limbs have been a bit tremulous when touched, but she has repeatedly settled down when left alone, until last night. Lydia’s body is now trembling fiercely, probably due to Pentabarb withdrawal. Her shivers could also be partially due to the fact that she has a fever. As anticipated, the femoral line is now producing positive cultures, meaning it's infected. Lydia's breathing tube has a different infectious organism in it as well.

The plan yesterday afternoon, before the positive culture from her line, was to keep her intubated and push her in for surgery today, for all three procedures. It took quite a political campaign accelerated by Beth and continued by me to achieve this plan. Our selling points for getting the surgeries done SOON started with Lydia’s increasing need for new IV access as well the fact that she was already intubated, and there was no reason to put her through the additional risks and trauma of having to reintubate for surgery.

Wednesday night, as we thought the campaign had been successful, the realization came that we had only begun. We had sold the head physician in the PICU, but that was to be only the beginning. The surgery fellow showed up with the same old story that I thought had been resolved last week, no fundo unless he was guaranteed that Lydia would be seizure-free indefinitely afterwards. He recommended that we take Lydia home with an ND feeding tube (one that goes in her nose and is taped to her face, with an end deep below the stomach) and feed her the Ketogenic diet that way. If she reached a year seizure-free with the diet then he would consider putting in the g-tube and doing the fundo. Nothing about this plan was acceptable. For one thing, an x-ray is required to check placement for an ND tube. I asked him if he expected me to run in for an x-ray each morning before breakfast if she pulled out the tube. He answered that we could always keep Lydia in restraints to cut down on that need.

He just couldn’t get past the fact that fundo surgery for Lydia has risks grater than for a normal child. I had to explain that life in general has more risks for Lydia, because of her medical conditions. I assured him that he wasn’t risking a child’s promising long life. Lydia isn’t expected to live to adulthood, but beyond that we don’t know. But our obligation to her, as parents and physicians, should be to assure the best QUALITY of life possible. And every other specialty had assured me that theses procedures are the best things to be done to that end. We are just out of risk-free options, but that doesn’t mean that we have resolved to give up. He wasn’t swayed.

Needless to say, I wasn’t happy. This conversation took place after a seemingly very successful day of selling a powerful physician, the head guy in the PICU, on Lydia’s TIMELY need to get on the schedule. After involving an attending from every specialty, the social worker, and a few others, we finally got our slot and a willing surgeon. The only change would be that this surgeon thought that Lydia would best benefit from an open, not a laparoscopic fundo. Now that surgery isn’t happening tomorrow, we may well end up with a different surgeon when the time comes and his opinion may yet be different.

Before surgery will be considered again, Lydia will be required to have a negative blood culture and no fever. She was started on two antibiotics Wednesday for the respiratory infection, which should help with the blood infection as well. The respiratory infection wasn’t going to bring the plans to a halt, because of it’s confined location, but the blood stream could cause real problems if surgery were to happen. The cultures take 48 hours to confirm growth, or hopefully no growth. There have been MANY attempts by five of the most qualified to get a new line, so the infected one could be removed to speed up recovery. They were all unsuccessful though. So the old one will be kept, out of necessity and we will wait.

Beth and I have been passing our time at bedside by smocking. We took a class together a few weeks ago, so this is a new thing for us. We have enjoyed taking turns, day shift and night shift, on the same piece and making great speed. The staff has enjoyed watching. One young physician was thrilled that I was “crafting” a “frock”. :o) His English is quite good, but his word choice gives away the fact that it isn’t his native language.

We’ve found other ways to have some fun too. I heard the music in the hall and stuck my head out of our new living quarters to ask the clowns to come meet “grandma and grandpa”. They proceeded to do a hilarious impromptu skit for us. They were nervous, ridiculously checking each other to see if they were appropriate to “meet grandma and grandpa”. I’ve decided that the clowns, as well as the pet therapy dogs, are as much for the parents as they are for the kids. Laughter is a great way to relieve stress.

Stress is less for me, just because of having Jason here. The timing of this extended, out-of-state stay is a blessing in itself. I know that Jason could have found more exciting things to do with his summer break from teaching school. But for my sake, it is a precious relief to have him at my side for this time. We work best as a unit, and I thank God for that.

Continued prayers and blessings,

Allison

Wednesday, June 12, 2002 at 09:36 AM (CDT)

We’re moving right along. Lydia’s Pentabarb has been decrease from 60mg/hr to 10mg/hr. The goal had been to keep her in burst suppression for at least 24 hours. This means that her EEG would mainly look flat (suppression) with occasional, brief bursts of brain activity. By the time they got her there, the long acting medication was continuing to build in her system, so she had 24 hours of just plain suppression, despite decreases in mgs. Last night she finally started having some activity, mostly brain, but a little bit of physical activity as well. This is probably the deepest I’ve seen her go.

I am used to seeing Lydia breath over the ventilator, like she started doing this morning. For example, the machine is set for a breathing frequency of 10 breaths per min, but she is breathing 20. Up until last night, she was ONLY breathing the ten. Her initial oxygen requirement was higher than I’m used to as well. Lydia’s electrolytes, blood pressure, Carbon Dioxide, Acidity, Hydration and even her blood sugar have required careful monitoring and compensation. The blood sugar abnormality is a first. Her normal should be 80-120. Monday night it was 427! By last night it was 48, after lots of insulin. From there it went back in the 200’s and finally to 121. Talk about a roller coaster!?!? Her temperature has been doing the same, being either 97 or 100, rarely in between.

In summary, Lydia spent 24 hours very, very deep. The hopeful plan is to continue to slowly decrease the Pentabarb and bring her out. If she seizes, this plan is likely to rewind and pause for a little while. Then we’ll try again. This process isn’t historically a flawless one for Lydia. We’ve never seen her come out easily, and have had to add maintance Phenobarbital as a step down to help wean her from the Pentabarb with fewer seizures. It’s like giving an alcoholic a drink and then expecting the to willingly stop with the one. Lydia’s “liquor” if you will is Pentabarb and the softer drink to step down with has been Phenobarbital. Which then requires weeks, if not months to wean, but at home.

Needless to say, Lydia’s condition has not been stable, and therefore surgery of all kind has been put off indefinitely. She still has her same femoral line, but it is now on day 11 of the 3-14 day life expectancy. A nurse, I.V. team member, and two physicians tried for a second line yesterday, all unsuccessfully. Lydia’s spent so much of her life as a pincushion, that her veins have figured out how to shrink, run and hide. She’s receiving so many things through this one line now that eventually, they found a combination yesterday that had an adverse chemical reaction and crystallized. Thankfully, no irreversible damage was done to the line, but the need for another is obvious.

There is another need that I would like to ask for you to pray with me about. Monday was the last day for our beloved nurse back in Savannah. Sommer’s husband, Rick is just coming off leave after serving military duty over seas for the past year. After a much-needed vacation TOGETHER he is being stationed in the US, where they can be together, at least for a while. I am thrilled for her, that she can be with him, and actually have a chance to enjoy some of this precious, extended, newlywed time.

From a selfish standpoint, Sommer has been such a tremendous support and lifeline to Dr.Pearlman over the past year plus. She has promised to let the secretary know to immediately send our calls back, because we usually really need something when we call. Before having Sommer’s direct line, we were calling Atlanta, leaving voicemails on a general mailbox for one of many possible nurses to call back, maybe. Sometimes days later, they would call you, then call one of the six neurologists, before again, calling back to address our concerns or problems. Needless to say, Sommer has changed our life, and our expectations. Her position is now vacant and I am praying earnestly for her replacement. They are going to have big, special shoes to fill. We have come to love Sommer dearly for who she is, as well as the fact that she has even tracked Dr.Pearlman down on his cell phone, when he was out of town and we were approaching emergency brain surgery.

Another season has come to an end. Due to the upcoming Ketogenic diet, which will not include breast milk, I have weaned myself from the breast pump. I am so used to sitting at Lydia’s bedside, being ever conscious of the clock for the purpose of keeping a vigorous pumping schedule to maintain my supply. I am actually enjoying my new freedom, although I’m sure that the emotional aspect of this change will hit me later, when Lydia is awake and rooting. I’m trying not to think about that inevitable time.

My Mom put in another night shift last night, and has now left to go back home for a few days of rest. Jason’s parents flew in last night to fill in where she’s leaving off. We are grateful for the support of four wonderful parents. Miss Lydia has united a strong team! With God’s strength we will continue to fight for her.

Continued Prayers and Blessings,
Allison

Monday, June 10, 2002 at 09:31 PM (CDT)

Lydia is officially in her fourth drug induced coma. Her local neurologist had joked last week that Lydia was just drug seeking. She’s developed some habit for a twenty month old! :o) It took over twelve hours to get her suppressed. It was twelve long hours of seizing, temperature up to 104.2, heart rate up to 210, and blood ph flirting with acidosis. When the neurologist made the decision to pursue this course, the EEG was showing lots of seizure activity, but most of it did not correlate with her jerking. This is seizure activity that, in an older child, would be noticed as a confused state, a change of consciousness. This of course doesn’t help clarify what to look for in the future, at home, when deciding whether she is seizing or not, but at least it made this course obvious.

Lydia is now mostly still, with occasional myoclonic jerks. As I mentioned this morning, she is on a ventilator. They have had to start her on a drip of Levophed (medication to increase her blood pressure). Her heart rate is down to about 160, and temperature to 100. These are both still higher than I like, but I’m told that they may be related to her hydration. Hopefully, continued boluses of fluids will settle them down. Although, we’ve been here before, and Lydia has come out of it fine, the physicians have spent the day pointing out the seriousness of the situation, the life threatening nature of this drug, Pentabarb. They have continuously explained this as the motivation behind their hesitation to proceed with more speed.

As a result, it made for such a tense day. My Mom didn’t leave the bedside as planned after her nightshift. Her friend, Jane, was here to relieve her, but it just didn’t work out as planned. The grueling 24-hour shift has done Mom in, so Jason and I get the next turn. We have recently been given claim to a small room near the PICU with a sofa and recliner in it. We will take turns tonight, sleeping and sitting at bedside. I’ve been given permission to use the surgery recovery room shower, as long as it’s after hours. So, we are officially moved in at least until tomorrow night, when hopefully Mom will feel up to taking another shift.

Nothing like a rude awakening coming back from vacation, huh!?!? Jason and I are both sunburned. You’d think that we’d be smart enough to prevent that. We were only planning on checking out the beach for a few minutes, but ended up having a blast figuring out the boogie boards in the ocean instead. It was a hilarious sight. I don’t know when we’ve squealed and laughed so hard. What a wonderful release.

We also had many nice meals. The first day we were there, we were so tired that we barely made it through our two o’clock lunch out. If the waitress had taken just a little longer bringing us the check, I think we would have both been asleep in the booth. It would be an understatement to say we were in slow motion.

Thursday, in my entry I shared some of the frustrations we were experiencing that were contributing to the fatigue. It didn’t lighten up initially even after we left the hospital. On the way out of Miami, by way of five u-turns, the gaslight came on, and then the credit card thing at the pump was broken. There were no fast food restaurants in sight, other than the Spanish menu painted on the gas station window. Let’s just say it didn’t tempt us. We decided to get drinks and settle for junk food in the car for supper. My supper consisted of chocolate milk, Pringles and Life cereal. Yummmmm. :o)

As we finally hit the CORRECT interstate, the clouds opened up and it started pouring. By this point I just broke into laughter. We felt like we were in some Chevy Chase movie or something. Then, as the rain stopped, one of “our” songs came on the radio. Whitney Houston’s “I Will Always Love You” was the song played at both of our proms. I caught Jason’s eye at the first one and we were together at the second. It was a special anniversary moment. Then, about three hours later we arrived at the condo. It was now almost eleven, so I was hesitant to call our friend, the owner of the condo, but we couldn’t get the keys to work. He realized that we had the wrong keys. The new security guard didn’t know where the key was to the lockbox with the spare keys in it. After a total of two hours, the manager came and let us in.

Whew. What a journey, but it was worth it. I had questions about whether I COULD relax and enjoy myself, knowing that Lydia wasn’t getting a break, but it happened. We truely experienced a peace that passes understanding.

We have come to affectionately call this past weekend our second honeymoon. One highlights included an evening walk on the beach. We came upon four LARGE sea turtles that had crawling up on shore to lay eggs. These turtles were 3-4 feet wide! I had never seen anything like it. I asked Jason if they could hurt me, and he assured me that they couldn’t catch me. :o)

The ocean always awes me. I realize how small I am and how BIG God has to be. It helps with perspective. On the way to the condo, one of my favorite Christian c.d.’s was playing. The chorus included “the beautiful oceans are there to remind you that I can satisfy your every need . . . That’s how much I love you, that’s how much I want you to see, that you are my child, and you mean so much to me.” I knew that these words applied to me as well as to Lydia, and tears streamed down my face.

In a way, the weekend was like our retreat to the garden, to plead that God make this pass if possible, but His will be done. I’m thrilled that our “garden” included swimming pools, a pool table, a garden tub, and a gorgeous ocean view. God does provide in His own time and fashion. I certainly couldn’t have planned this, but will treasure the wonderful memory.

Continued Prayers and Blessings,

Allison

Monday, June 10, 2002 at 08:36 AM (CDT)

I spent the morning on the phone with my Mom and the doctors back in Miami. Through the night last night Lydia received several doses of various I.V. seizure meds. They would hold her for a little while, but inevitably she would resume seizing. The last several hours she hasn’t stopped. Her heart rate has gone from it’s normal high of 135 to over 200 and her temperature is up to 103. Theses are her body’s typical reactions to PROLONGED seizure activity. She isn’t acidotic yet, so they are taking advantage of the option to proceed slowly. A machine is now breathing for her, which should help them feel more confident in proceeding to push the Pentabarb drip that has been started. I have expressed my concern that an EEG be started. We have seen her brain continue to seize long after her body was still, and the only way to know is through the EEG.

The medical support through the night was vigilant. The fellow, resident, and nurses were wonderful, but they just didn’t have the authority to act any more aggressively. The intensivist (man in charge) was consulted over the phone frequently. His idea of aggressive is just very different than what I’m used to, what those who know Lydia best are used to doing. I am at greater peace with this than ever before after having a long conversation with the intensivist. Knowing the thought process of the doctors makes it SO much easier. This is the key element that I have missed here. I have gotten spoiled by the relationships I have with Lydia’s “local” physicians of all levels.

The mutual sharing of knowledge and ideas has certainly made for the best care for Lydia. Before we left the hospital Thursday, Pat and Lori (epilepsy nurse and fellow) took some time to observe Lydia’s constant twitching and discussed their thoughts with me. We have a new theory. Lydia was constantly moving. Her hands, arms, shoulders, neck, and head were randomly writhing, twitching and occasionally jumping. Her lower extremities would sometimes get involved as well. Nothing was rhymic or symmetrical, like seizure activity should be. They decided that this looked more like a movement disorder with occasional myoclonic jerks mixed in rather than seizure activity. This is something that Keppra should help, but the Trileptal could aggrivate. Therefore, the Trileptal was dropped and the next day, Cogentin was added. Cogentin is a drug used to help counteract movement disorders caused by drug reactions.

This explaination makes perfect sense. Looking back, Lydia has always had some non-normal movements that didn’t register as seizures on the EEGs. They have been worse when Lydia’s medication loads have been extremely high. And they have been worse over the last month or so since the Trileptal was added. I never conceded that they weren’t seizures, because they lasted for hours and were not stoppable by holding the involved extremity. These were the criteria I was given for myoclonic jerks, the only other possible explanation I was offered. So, if this pans out, Lydia’s diagnosis will expand to COMPLICATED seizure disorder plus myoclonic jerks and movement disorder.

Of course we hope that the movement disorder aspect will subside as the Trileptal gets out of her system. I’m hesitant to think this will just go away, because of the research I’ve been doing on the subject. I’ve learned that movement disorder is a possible “side effect” of being on a lot of anti-seizure drugs. The drugs try to inhibit the seizure causing pathways, but also interrupt the brains controls that suppress other involuntary movements. I may have to type a retraction to that simplified explanation, as I come understand the process a little better.

This weekend, Lydia was living from dose to dose of Chloral Hydrate. Most of the movement disorders don’t have cures. Drugs are used to help manage, relax the muscles and provide rest sometimes, which is what they were doing for Lydia. She would get a few hours of rest after each dose, but even though her eyes remained shut, her body would start moving again. It reminds me a little bit of watching Michael J. Fox now days on TV.

The next concern is the possibility that Lydia’s present condition will delay surgery. I don’t know the surgeon’s perspective yet on taking her into the O.R. on a Pentabarb drip. My urgency comes from the fact that femoral line that Lydia has for her vein access has now been in eight days. They are usually kept 3-14 days. It is located high on her leg near the diaper area, which is just a hard area to keep clean and free from infection. Lydia will have to have a line to go into surgery with in order to get the port. Access has never been more critical.

Over the weekend, Lydia received slow continuous feeds by a ND tube (feeding tube placed through the nose to down below the stomach). Despite the deep tube, she was still vomiting frequently, mainly bile and some blood. They have started several more stomach medications. The need for a fundo has become even more obvious. I will be relieved to finally have all these surgeries out of the way.

According to Nana, the Lydia’s weekend wasn’t really that bad until Saturday night. Friday the renewal of the order for Keppra (only seizure med now) was overlooked and Lydia missed two doses. By Saturday night she was screaming, and started some seizure activity (at least we think that’s what it was). I have long felt like she needed this Pentabarb rest, but her condition hadn’t merited it until now. I pray that this will give her the break in the cycle to allow a long stretch of good days like it has in the past. Our two longest seizure-free stretches, six and seven weeks, were after comas. We have a ways to go before then though.

Jason and I will be heading back to Miami this afternoon after a blessed time of healing and restoration. Even while on the phone this morning, dealing with a difficult situation, I had a whole new level of clarity and patience. It’s hard to convey the complexities of the position we are in on a daily basis during hospitalizations like this. We want to exhibit Christ-like qualities AND fulfill the responsibility that God has given us as Lydia’s parents. Over a year ago, I watched Lydia go into respiratory failure because the doctors brushed me off. The staff was very apologetic the next day, but I couldn’t help wishing that I had been just a little more adamant or stood on my head or something. We want to be respectful, but also protect our child. We have to do our best, but we can’t control what happens, or what the doctors will do. This is where we have to come back to God’s sovereignty. As I was leaving detailed instructions with the nurse on my way out Thursday, Lucia reminded me that Lydia was in good hands. She urged me to trust God a little more.

That hit me between the eyes. I am in awe of His provisions that made this excursion for Jason and me possible. I’ll share more about it later, but now I need to finish packing and get back to my precious baby.

Continued Prayers and Blessings,

Allison

Thursday, June 06, 2002 at 03:28 PM (CDT)

Jason and I are ready for a break. The pizza place last night had moved across town from the former location where our directions had taken us. The computer isn’t working, so I have been on every floor of the hospital tracking down the parent’s library where I am now. And I am tying this entry for the second time after loosing the first one. I guess God knew that I would have to be on EMPTY, before agreeing to stop for a fill-up. Tonight Jason and I are planning to go on to Jensen Beach for a long weekend of vacation, celebrating our four year wedding anniversary.

We plan on returning Monday night before Lydia’s surgery scheduled for Tuesday. That was the first available slot for an “elective” surgery. It seems like such a long wait, but I am grateful that everything is falling in to place to allow us to use that time to unwind. Never before has there been so little required of bedside care. With no need to stay on top of little seizures, dry diapers and calling the nurse for vomiting is about it. Therefore, Nana and Papa, along with some friends, are going to take over for a few days.

As the surgeon was leaving after announcing the schedule, he added that this would allow enough time to get seizures under control. Frustration hit a high and I started calling everyone I knew in the hospital to try to get some communication between the specialists. Eventually, the resolution came in clarification that the surgeons were concerned about convulsive grand mal seizures, not the little ones like Lydia has been having.

There is question whether these episodes of twitching are even seizures at all. The EEG only showed one 40 second seizure during a time when Lydia twitched for hours. There was no obvious difference in her motions during that time to help us to know what to look for in the future. Dr.Resnick said that this doesn’t rule out the possibility that they are seizures. If they are, they have such small points of origin that the EEG can’t pick them up. If they aren’t, then they could be myoclonic jerks. We all have these as we are sleeping, but they don’t tend to last for hours continually even while awake. I asked Pat, the epilepsy nurse, if this could be an extreme version that I can’t find in the general information sources that I have available to me. She said that she certainly wouldn’t put it past Lydia to create a new catagory. Lydia has never been textbook, which is why no one really knows what’s going on. The neurologist wants to start the diet before discussing other possible explainations and possible plans.

For now, Lydia’s Versed drip is being slowly weaned. She is waking up a little more, but is still so floppy that she cannot even hold up her head. The twitching comes and stays for hours and then subsides for a while. Occupational and Physical Therapists are working with her, but can’t do much right now. The Occupational therapist has made a splint for one wrist and is making braces for both ankles. She didn’t like the position Lydia was keeping the hand and feet in while sleeping. This is the first time anyone has described Lydia as slightly spastic. Yuck. We’ve long know that Lydia has very low tone which plays a huge role in her developmental delays. It never occured to me that she could have both low and high tone.

The bottom line, is that with each new week, our expectations for Lydia are having to be altered. Our weary bodies are not supporting the emotional strain very well. I have mixed emotions about the weekend, being that it is the first time I have ever left Lydia for more than a few hours. So much of my days, every day, involves her care. I’m sure that it will feel like I’m leaving part of myself behind. At the same time, I am ever greatful for this opportunity to refocus and rest. The Occupational Therapist, Joan, overheard us discussing our plans and offered a whole list of must see sites and resturants for us. I’m sure we may hit a few, but the highlight may be the rare opportunity to sleep in!

I may not be able to update until Tuesday. Maybe someone else will for me. There shouldn’t be much to report though. I haven’t mentioned that Lydia did get her MRI done yesterday. It was already scheduled as outpatient. The results haven’t been offically reported yet. The neurosurgeon glanced at them and said that the fluid looked great. It certainly didn’t have the maturity of a normal 20month old’s, but he would need to compare it to Lydia’s last scan to see if there had been any progress or not. That’s about it for now.

Check out the photo page for some new sweet shots take over the past few weeks.

Thank you for your continued prayers and all of the sweet notes.

Allison

Tuesday, June 04, 2002 at 08:52 PM (CDT)

My battling over the phone with the physicians last night actually paid off. The fellow that was on asked ME what drug actually stops Lydia’s seizures. What a concept!?!? And guess what. He used the drug I recommended and it WORKED. Lydia received a couple of doses of Pentabarb (the last resort seizure stopper). The doses given only held her for a few hours at a time, but at least she got some rest. The little girl’s body needs a good long vacation!

Today, Lydia had an upper GI done. She started seizing on the way down to radiology and continued until the nurse asked me if we should forget the test and go back upstairs. By this time, it had gone on for 45 minutes, and the test would only take another 10. What was another ten minutes added to the hours she’d been allowed to seize this weekend? The test was preformed, and was normal, except that Lydia continually refluxed through it. At this particular time there are several possible extraordinary causes for the reflux. She had an NG tube in, which could have caused it, or it could be due to the seizure activity. Whatever the reason, we are glad to have that out of the way. Our understanding had been that this test was the only thing surgery was pending.

Little did we know how vast the chasm between the specialists’ plans is. The epileptologist, Dr.Resnick, presented his plan this afternoon. Based on last night’s EEG during Lydia’s seizure activity, he has determined that the seizure was multi-focal, not generalized. It’s like there were many small fires going on in Lydia’s brain rather than one big one. All of her extremities were jerking, but not in unison. This difference makes the decision to stop them less obvious to him. Non-generalized seizures supposedly don’t cause “damage” and are not life threatening like generalized ones. Therefore, the risk involved with allowing them to continue are not enough to outweigh the risks involved with giving Lydia the amount of medication required to stop them. That said, we all agree that she can’t make developmental progress or even have much quality of life like this. For now, instead of drugs though, Dr.Resnick has asked that we hold off to see if the diet will work to settle her down. This means waiting until the g-tube is put in so we have a way to get the diet in her. After an intense, almost heated discussion, we agreed to work on swallowing the plan.

Later in the afternoon, the surgery fellow came by. We discussed risks and benefits of the surgeries, all of which should occur at the same time. This is something I’ve been insistent upon, the only reason she doesn’t have a port yet. For almost a year now we’ve wanted a port, but knew that we were still pending a decision on the g-tube. I wanted to wait until the decision was made because I know how hard seizure control will be coming out of surgery and want to minimize the number of times that battle will have to be fought.

A first day surgery resident came in Sunday and tried to tell me that ONLY a port would be put in the next day. As long as Lydia was still in the pattern of seizing, they wouldn’t do the other procedures. I was livid. The only reason she had been seizing was lack of aggressiveness, and now she was going to have two recoveries because of it!?! Needless to say, that didn’t happen. I wouldn’t sign the release form anyway with the little information he could give me. Remember that he had never even stepped foot into one of their operating rooms before. Grrrrr. I had a long talk with a patient representative and the physician who was on in the PICU that day. As a result, Lydia is to have all three procedures at ONCE.

The problem is when. Today, the surgeon explained that he intends to wait until Lydia’s seizures have been controlled, because seizures post-surgery could rupture the stitches in her diaphragm/stomach/esophagus. This makes perfect sense to me knowing that she vomits, swallows a lot of air in her tummy (increasing pressure), and even has diaphragm contractions during her seizures. These diaphragm seizures are the screams Jason described last night.

Obviously we have a problem. Each specialty is waiting on the other to do something FIRST. The dilemma presented late enough in the day that we were not able to resolve it today. Hopefully tomorrow we can.

I was glad to leave tonight for shift change. It will only be by God’s strength that I will be able to just sit there and watch Lydia seize without begging for drugs. It is such a helpless feeling. Mom is just glad that she won’t have to spend the night fighting for treatment. She can rock Lydia through the night tonight since she is no longer on EEG telemetry.

Her EEG from Savannah was perplexing to Dr.Pearlman. He has a call in to Dr.Resnick to discuss that as well as the general plan. I appreciate his understanding of my need for a little coaching. It is such a dramatic change to go from stopping any seizure after five minutes, to letting them go on for hours. I need as much knowledge as possible to help me with this transition. I look forward to talking with him again tomorrow and hearing his take on things.

On a brighter note, Lydia has been quite comfortable today. She received her last dose of Pentabarb after her test and slept most of the day afterwards. She has been on a continuous drip of Versed since Sunday. This is the drug used for her first coma. The dose isn’t enough to keep the seizures away completely, but she’s sedated enough that she doesn’t care that she isn’t eating, etc. Lydia started stirring just before I left tonight and I went to her and sang a little. She couldn’t muster the energy to open her eyes, but she smiled the sweetest smile, dimples and all.

Like the rainbow that we saw from the life-flight plane, Lydia’s smile felt like a little hug from God, a reminder of His loving presence. I can’t say that I haven’t struggled this week. It’s been hard, but I know that God’s promises remain constant and that they are waiting on me to return to them when I wander. He is still good and sovereign. It’s so hard to trust sometimes when our perspective screams the contrary.

Continued Prayers and Blessings,
Allison

Monday, June 03, 2002 at 10:07 PM (CDT)

And now, for something completely different.

It has been a while since I have, as my wife puts it, “journalized.” I made the mistake of showing the slightest bit of interest and look where it got me. Sitting on the floor having to mute the ballgame in order to concentrate enough to make this legible.

Before I get into the details let me share with you something I noticed that was written in an article framed on the wall near the surgery department. That particular wall is a shameless self-promotion on the part of the hospital. They are very proud of their efforts at separating a pair of conjoined twins. These two were apparently joined around the lower mid section and the newspaper had the following to say:

It appeared the two shared one p****, but with the treatment we provided in the
hospital and with the application of hormones we determined that they had two.

My mother assures me that the word (I don’t have to tell you which one) is medical but I still feel dirty saying it or even typing it.

Anyway, I wondered whether process of counting said appendages is that difficult a process or is it just me? Secondly, was the “treatment provided” to the physicians doing the counting? I suppose that after enough “treatment” even the best of us tend to see double. On the same note, I knew that hormones give women of a certain age a better outlook on life but I did not know they worked equally well on doctors. Surely this newfound knowledge will provide us another option when dealing with a difficult doctor.

As far as Lydia goes, let me start with a description of our weekend. Lydia and Allison arrived in Miami Friday evening. Isn’t it typical that the kid needs medical attention right as the doctors leave for their weekend adventures? We fought doctors rather frequently this weekend. We have had great difficulty, especially here in Miami, getting evening doctors to stop the seizures even when the daytime doctor has told us that she doesn’t need to be seizing. In general, the seizures in question are small, one hand for example. Still, there’s no point in letting them go on for hours at a time. We do not know if the orders are not being written or if the night doctors and their typical lack of formal “practice” are just scared of the doses of medicine Lydia requires. Maybe it’s just some elaborate scheme to drive me to insanity.

Today, we discussed the next additions to Lydia’s already substantial medical history. Specifically those include a “port”, a “g-tube”, and a “fundo.” Allison will fill you in on the actual medical terms later.

The port is the least invasive and easiest decision to make. The procedure involves a small incision most likely on Lydia’s chest (opposite her stimulator incision). The surgeon would implant a circular apparatus the shape and size of a stack of about four nickels attached to a small tube. The tube would be inserted into a vein near her heart and the circle is secured right below the surface of her skin. After implantation, we would be able to numb her skin with some special cream and give her a painless IV the first time, every time. She would not be repeatedly stuck for blood tests, IV’s etcetera. She would also not spend hours waiting for a nurse to find a vein that cooperates while she seizes. This is an easy decision and we look forward to the Lydia’s future health care being that much easier.

The g-tube is as exciting as the port but after watching a video this afternoon, it gives me the creeps. This would involve a tube that goes to Lydia’s stomach directly from the outside of her belly. I, as usual, have my own take on things. It should be called a S-tube (for stomach) and the reason that you need it is some sort of difficulty with using your e-tube (esophagus). We look forward to the idea of not fighting with medicines twice a day and not fighting with the special diet she might start on for seizures. She shouldn’t dislike eating like she does when she doesn’t have so many bad mouth experiences to go along with it.

Thirdly, she will likely have a procedure done to her stomach (which I will not even venture a guess on its spelling) that keeps her from having the frequent acid reflux we recently discovered she has. This is more invasive than the other two surgeries but it seems to be a consensus that she would benefit from it.

Right now, Lydia is seizing and doing her awful seizure scream for her maternal grandparents at the hospital and the doctor(s) are not providing any relief. Thankfully Allison is dealing with the doctors on the telephone and not me because my anger would not help anything. I frequently thank God for Allison’s ability to separate her emotions long enough to get things done before she has to vent.

Jason

Saturday, June 01, 2002 at 12:47 PM (CDT)

I’m happy to announce that we have computer access! I have intended on updating many times this week but have not been able to tear myself away and get to a computer. A family friend loaned us a laptop to use while we are here in Florida. Thank you Gene!

Yes, I said Florida. Compared to this week, last week was uneventful. We have set many new records. Lydia used up all the Diastat available to us at home last weekend. She had up to 70mg at one time, 250mg in less than 36 hours. And she keeps on ticking. Lydia is one amazing baby. But, you must know that by now without my saying. :o)

We had to take her back into the PICU in Macon Monday because of a seizure that we couldn’t stop at home. Tuesday, Lydia was transferred to Savannah for continuous EEG monitoring, then yesterday she was flown to Miami for a higher level of care. Despite many prolonged seizures, she has remained amazingly stable, requiring only occasional blow-by oxygen and frequent anti-convulsant boluses. The mixed picture has contributed to many room changes, PICU to floor and back. Lydia has been in six various rooms over the three hospitals! For now, she is settled into the PICU at Miami Children’s Hospital.

Another record set reflects the difficulty we have had keeping I.V. access. Since yesterday, three sites have gone bad including one external jugular. The I.V. team just got a line on her hand, and warned us that it was the last vein worth trying. We are waiting for a surgical consult this afternoon to discuss getting a port-a-cath put in. This is a more permanent form of access that can be used to give meds/fluids and to draw blood from. I have been asking for one for a long time. Hopefully this will make Lydia’s life much better, less poking and less time seizing while waiting for an I.V..

Prevacid should also make Lydia’s life better. This new medication is to be added today because of the results of the pH probe test done in Savannah. In 24 hours, Lydia refluxed 146 times (24-48 times is considered normal for her age). Every time she was extremely fussy, she was refluxing! I couldn’t believe it. This doesn’t eliminate the possibility of neurological irritability as well. But, we will hope and pray for dramatic improvement as the treatment begins. Thank you God for Dr.Pearlman’s wisdom.

It took 28 hours of prayerful mountain moving to get insurance approval for the air transport. The delay allowed the pH test to be completed though! Isn’t God’s timing amazing? My brother, Jeffrey, had plans to visit us in Macon last week. He followed us to Savannah and was a tremendous help spelling Jason and me so we could rest some. We are all tired, but have had some sleep. We’re learning how to take shifts. Hospitalizations and traveling are both so exhausting. My stomach has just about recovered from the small plane ride through some storms yesterday. Jason just arrived after stopping at a motel to sleep on the way last night. When I called him to report our arrival he still had more than 300 miles to drive.

My parents are here with us in Miami. This is a good thing since we are now in a PICU where we are not allowed to sleep. We always have someone at Lydia’s bedside. Here that means that that someone must keep his or her eyes open at all times, even through the night. It’s helpful to have several of us to rotate.

In a way, this is a perfect time for us to be in Miami, near my parents, so Jason’s parents are freed up to help his brother and his recently expanded family. I am happy to announce that Liam Gray Tripp was born Tuesday afternoon, back at the hospital in Macon. He came into the world just as we were arriving in Savannah. Liam was 8lbs 12ozs and 21 ½ inches long. Congratulations to Andrew, Jessica and Autumn!

We will try to be updating the web page more frequently until we get back home. I don’t even know what to expect for this hospitalization as far as duration or outcome. We came because Lydia’s seizures became so frequent and difficult to stop. The screaming had just gotten to be too much for everyone as well. Dr.Pearlman willingly admitted that this is a complicated situation, which he doesn’t fully understand, even with the recent EEG data. We are searching the remaining options and seeking the best quality of life for Lydia, whatever that may be.

Thank you for your continued prayers.

Allison

Saturday, May 25, 2002 at 12:08 PM (CDT)

Warning, this is a LONG entry and you may need tissues!

It has been quite a week! Saturday, Lydia’s prolonged seizures picked back up along with the vomiting and screaming. She’s not even been able to keep down her sleeping medication. Tuesday, on the way to Savannah, we even had to pull off the road and administer a couple of doses of Diastat. Thankfully, the car ride was soothing to her, for the most part. Lydia still spent the evening screaming and vomiting, which is especially frustrating because prior to this month, at least post-Diastat, we could count on Lydia being happy. This phenomenon finally happened after her Diastat on Wednesday. Dr.Pearlman had turned up the amplitude of her stimulator, and with that along with the Diastat, we finally got to see the sweet, playful baby we remembered reemerge. It was delightful! Lydia smiled at everyone at our favorite store, Punch and Judy. You know three girls can’t go on a road trip without a little shopping involved. :o) And then Lydia talked and played and NAPPED in the car back to Macon. Her favorite “toy” in the car was a plastic shopping bag. The sounds she could make by hitting it were just too cool! She had a blast and I beamed as I took video of her from the front seat. I was scared that it might not last and I wanted to experience this again!

Sure enough, it didn’t last, but the good moods have returned after each round of Diastat since. That would include Lydia’s new record (I think). The twenty-four hours starting Thursday night included 70mg of Diastat! (Remember that 10mg is considered an adult dose.) She had the first 20mg at 5:00PM and then the next 30mg around 2:00AM. After the 30mg didn’t stop the seizure, we had to take her on in to the PICU. Everything about this seizure was odd. I had never seen Lydia have one like it. It looked more like she was doing the wave with her head, neck, and arms. There was nothing jerky about it. It looked more like a dance move. Lydia was awake and looking at us pleasantly making purposeful movements in between “waves”. Once we got her to the hospital, the monitors confirmed that her temperature and heart rate were not elevated like they historically are after more than an hour of seizing. After two hours of unsuccessful attempts to get an I.V., Lydia’s seizure just stopped. This means that we had a PICU stay without any drugs, I.V. fluids, or labs (they couldn’t get any blood either)! Jason asked if we still had to pay. :o)

When leaving the hospital after getting us girls settled, Jason noticed suspicious fluid under the car and a hot smell. Therefore, we decided to drop the car off at the shop on our way home after Lydia was discharged. I had to break out the Diastat in the dealership parking lot and again as soon as we got home. It was back to Lydia’s typical facial seizure, and it stopped with the 20mg. That was the last of the excitement yesterday. She was still twitchy at supper, but some Ativan kept it at bay. It just feels like we are not STOPPING whatever is going on in her brain. Like we are suppressing it enough not to see continuous seizure activity in her body, but I can’t help but wonder what’s actually going on in her brain. Last July, Lydia was hooked up to continuous EEG monitoring while being medicated to stop a terrible prolonged generalized (grand mal) seizure. The decision was made to put her into the coma because we could see that her brain was still actively seizing even though enough medication had been given to still her body, this is called sub-clinical seizure activity.

My gut has been that this irritability that has been going on since the last week of April was neurological in origin, whether or not that actually means that she has been having sub-clinical seizures or not. The only way to know for sure is to have an EEG done. I talked to Dr.Pearlman about this last week. We decided not to do the EEG, because they have one planned in Miami for the first week of June. Also, although the picture doesn’t fit perfectly, Dr.Pearlman said that irritability, arching, and vomiting could all be symptoms of reflux. He wants to rule that out by a twenty-four hour test with a pH probe first. He would prefer that answer because it would be easy to treat. Neurological irritability has a grimmer prognosis.

At my request, we talked a lot about prognosis for the first time at this last appointment. I had to push him to get him to tell me what he did. We all know that Lydia has defied medical probability for the better and for the worse. I explained that I needed help focusing my goals though. We have fought so hard to ELIMINATE seizures and achieve a NORMAL life for Lydia. Dr.Pearlman was willing to say that Lydia will never be normal. Only she will be able to show us what that means, but for example, he said that IF Lydia walks, he would expect that it would be with a walker at the age of five. A large part of the reasoning behind this expectation is Lydia’s diagnosis of cortical dysplasia. This diagnosis was found by pathology done on the removed brain tissue after surgery. My knowledge of this subject is still very limited, but basically, it tells us this. During my first trimester, as Lydia’s cells were dividing and multiplying, the brain cells did not form normally. Our hope, even when learning this, was that it was just a portion of her brain, and that that portion had been removed. Based on the specifics of the pathology results and Lydia’s continued problems, Dr.Pearlman told us that likely, Lydia’s whole brain is effected.

This effect plays a role in the seizures of course, because abnormal tissue is more prone to seizures, but also, it plays a large role in her development. Looking back, I don’t remember Lydia ever having much tone or strength in her muscles. She wasn’t balled up like a normal newborn. Without considering that, we had been working under the assumption that the seizures and medication side effects had been the reason for her delays. Although that is certainly still one aspect, the core reason is more likely that Lydia’s brain did not form with all of the pathways needed to tell her muscles what to do. The young brain is certainly amazingly adaptable, and new pathways can form, but that will only happen with intensive therapy. It will probably never be the same as a NORMAL brain though. The reason that neurological irritability concerns Dr.Pearlman, is that it could indicate an even more significant state of disorder in Lydia’s brain, which could only be treated with medication that would hinder development.

I have seen such a high correlation between the seizures and the irritability, which to me meant that it wasn’t that bad of a thing. As long as we can get better control of the seizures, the irritability wouldn’t be very frequent. It wouldn’t have such a large effect on her quality of life. The reality of it is that we have few options left for increased seizure control other than larger amounts and combinations of drugs that would again further hinder development. In the past, even large quantities didn’t even seem to help much either. This explains why Dr.Pearlman feels so strongly about putting Lydia on the Ketogenic Diet.

He said that the diet CAN work for seizure reduction or elimination even when the cause is cortical dysplasia. A family that we have recently met is starting the diet with Dr.Pearlman on June 11 and he encouraged us to consider doing it at the same time. Of course that’s supposed to be our vacation week after Lydia’s appointments in Florida. That isn’t the only date available, but we are considering it.

Although down on paper the decision seems so obvious, we are struggling with it. The diet specifies every gram of food in specific combinations that Lydia would have to eat. Her acceptance of any food other than by way of nursing is still very erratic since she has become so irritable. And nursing has been my saving grace on these weary days of little comfort options. In theory, if the diet really works, Lydia will be less in this “seizure mode” and therefore less irritable, less in need/want of nursing. I just dread the transition time. I’ve tried comforting her with other things this weekend, and only made her MAD. Selfishly, I resent the idea of going from the most able to comfort her to the opposite. Hopefully I’m just imagining the worst. That can’t be what I dwell on.

All of this said, one of my friends quickly reminded me that there is still hope, and that God can still heal Lydia. I agree that there is still hope, but it can’t be in Lydia’s earthly healing. God is still good, and although I know He can heal Lydia, I also know that He may choose not to, still keeping with His goodness. The best example that comes to mind is Christ’s crucifixion. Our idea of goodness doesn’t tend to include seizures, crucifixions, or any other kind of suffering. I’m not able to give you the “rest of the story” about Lydia like the Bible gives about Christ. But I know that it exists and God is orchestrating it. We just have to keep praying for the peace and strength to play the roles that he has planned for us. It may be spending a week in the hospital rather than on vacation, starting the diet. This starts with two days of starvation. Doesn’t sound better than the beach, but if it’s part of God’s plan, it will be beautiful in the end. Mallory’s mom has shared with me this analogy she frequently returns to. Life is like a tapestry. We are just seeing the messy, snagged, knotted back, but oh how beautiful is the side God’s working from!

Jeremiah 29:11-14a states, “’For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. I will be found by you…’ ”. There has been an ultimate blessing, which I have experienced through the circumstances of Lydia’s life thus far. My tears and wrestling have brought me to seek God like never before and I have found Him, and through continued struggles, I am coming to know Him even more. This is what it’s all about.

Continued prayers and blessings,

Allison

Friday, May 17, 2002 at 11:49 AM (CDT)

The good news is that it has now been nine days since Lydia’s last dose of Diastat! She’s had a few twitchy moments, but no prolonged seizures. The bad news is that she’s continued to be very irritable. She’s not eating or sleeping well, except at night with the help of medication. And she’s gagging more easily, occasionally loosing her food or even worse her medications. The rare naps over the last few days have been after doses of Advil. We are guessing that maybe she’s having headaches!?!? She’s obviously uncomfortable and unhappy, but it’s just so hard to know why.

For now, we’ve received permission to increase her dose of Advil, and we’re continuing to increase her Trileptal (new seizure drug)as planned. It will soon be up to the initial desired dose. Wednesday Lydia has appointments in Savannah, both neurology and ophthalmology. I pray that Lydia will be feeling much better by then, but if not, maybe another stimulator increase could help.

I’ve continued to cancel most of Lydia’s therapy sessions. This has been a long stretch, even for her. It’s difficult to maintain the gains that she’s worked so hard for when she’s like this. There are times when she calms, but they never last long and are very unpredictable. We enjoyed a nice Mother’s Day lunch by taking turns walking Lydia around the restaurant. She wants to keep moving constantly. Lydia went out with Jason and his Dad to run a few errands and was fine except when they had to stand in line to pay. Being stationary is just torture!?!? :o()

My mother and her friend Jane are here from Florida for a visit. It is nice to have more people to take turns pacifying the baby. Today is actually Mother’s birthday. I don’t think that she’s gotten any birthday smiles from Lydia yet, but she’s thrilled to have time with her on her special day anyway.

Mother has taken over the task of feeding Lydia for me since she’s been here. In general, Lydia has become a much less finicky eater, WHEN she eats. If she’s in the mood to eat, it doesn’t seem to matter much what she’s offered, as long as we throw in a few potato sticks and now WATER. I suddenly realized that she was over a year and a half old and had never tasted water. I’m thrilled to report that she has quickly taken to it and loves it. Like a “real person” she is now drinking COLD water at each meal with her food. :o)

We will continue to celebrate these little joys and pray for bigger gains in the near future. Actually, even the major difference that has made this a particularly long "neurological cycle" is a gain. Lydia has required drug induced comas to stop seizure cycles every four to five months of her life. This time, the seizures got very frequent and intense, but no coma, not even a hospitalization! And it's been SIX months since her last coma. At this time, it's easy to overlook this significant mark of progress. But I'd rather be at home with an upset baby than in the hospital any day! As hard as it is to say while in the thick of it, in this case, I prefer drawn out over dramatic.

This conclusion is easier to come by as I have recently been painfully reminded of how bad it DOES get. The little boy I mentioned a few weeks ago, Joshua, is having a tough time in the hospital. If you can, please drop by his webpage and leave his parents a word of encouragement. I know how uplifting your notes are to us. His address is www.caringbridge.com/nj/joshuagendel.

Thanks,
Allison

Friday, May 10, 2002 at 09:30 AM (CDT)

Yeah! Yesterday was the first day without Diastat in a week! Lydia is still quite irritable most of the time and isn’t quite back to her eating and sleeping schedules. She seems to be headed there though. Each day since Wednesday she has tolerated a little more time being put down without screaming, or even just being rocked. Most of the time she still wants to be walked. This morning was the first morning I got “wake-up” smiles. Oh, how I’ve missed those!

I canceled therapies one by one this week knowing that they wouldn’t be productive. This morning I decided to give PT a try, and Lydia did pretty well for the first 15-20 minutes. I guess we have to start somewhere. It’s ironic to fight so hard for therapies one week and then cancel them the next!?!?!

This seizure cycle, and the vomiting that accompanied it, brought Lydia close to dehydration. In the past, we would definitely have had to drop a NG tube. It was a sure sign of progress that we were able to get the fluids in her by mouth! She didn’t like it, but we could dribble milk, juice, and water into Lydia’s mouth and she’d actually swallow it between protests. This is certainly one of those little/big blessings to be grateful for!

Another blessing this week came after Lydia woke up from a 20mg dose of Diastat. I went into her room to help her settle back into her favorite sleeping position for the night and gave her a soft teddy bear to hold. She was on her tummy, supporting herself on her elbows. Lydia hugged the bear with one arm and looked up at me with the sweetest smile. I was just ready to melt right there. It was confirmation that Lydia was just as relieved to feel better as I was for her. Our sweet little girl was still in there behind all that grumpiness, wanting to come out.

If only we could bottle that sweet mood and open it up on command!?!?! We have reservations at a nice restaurant for Mother’s Day, but I’m not yet convinced Lydia will be cooperative enough to allow us to finish the meal. I certainly don’t want to disturb others. I can’t believe it will be my second Mother’s Day! I have a hard time remembering life before Lydia.

Monday will be a milestone for Lydia. It will be six months since her grid surgery in Miami. Tuesday will be six months since the resection. We had hoped that these dates would mark more significant gains in Lydia’s seizure control, but grateful anyway for the progress made. Reading the journals of the other families currently going through the surgery makes me thrilled to be at home, even though Lydia isn’t having a good time. Of course we’d do it again if there were strong reason to believe that it would help her, but it makes me weary even thinking about it.

We have less than a month before we head back to Miami to discuss the further possibilities for Lydia’s treatment. Please be praying for the wisdom of these doctors. We will be seeing Dr.Rageb, the neurosurgeon who preformed Lydia’s surgery, and Dr.Resnick, an epileptologist. We haven’t actually met Dr.Resnick before. He is the partner of Dr.Duchowny, the epileptologist who followed Lydia while she was in Miami. This transfer of care was made in hopes to build a better team effort to work on Lydia’s behalf.

Continued Prayers and Blessings,
Allison

Monday, May 06, 2002 at 04:46 PM (CDT)

Help! Anyone want to skip his or her workout at the gym and walk Lydia around instead? Our arms and backs are aching and tired because she is just so heavy and wants to be walked constantly. Poor Lydia is having a rough time, but let me go back and start at the beginning of last week. Sunday night Lydia required a dose of Diastat to stop a seizure. This was after a fussy afternoon and decreased appetite. Monday morning we got a call from the developmental pediatrician canceling our appointment because she was sick. Doctors aren’t supposed to get sick, right?!?! :o) I was flustered, because I was counting on using her recommendations for my foundation at the meeting on Tuesday, but God worked it all out anyway.

The meeting wasn’t seamless, but ultimately, Lydia’s therapies will all continue at the same frequency. I was able to help resolve some concerns that the reviewing team had. I’ll share some examples. I verified that Lydia’s therapies are not causing her seizures, therefore needing to be reduced for the sake of her health (if only it was that easy!). Also, we can’t wait until Lydia’s seizures are controlled to give her therapy, even though that means that some sessions aren’t very productive due to extreme irritability. It may be a long time before that happens, if ever, and Lydia’s development should be fostered in the meantime. There's a reason for Early Intervention. It’s to maximize the ever important first three years of development! We also verified that Lydia’s therapists aren’t overlapping services. Just because the Occupational Therapist noted in her report how well Lydia was sitting, doesn’t mean that we no longer need a Physical Therapist. It was just an observation made while getting Lydia to reach with her arms, something done while Lydia was sitting. As you can see from these examples, the arguments were nit-picky. Dr. Pearlman’s letters addressing the need to continue Lydia’s therapies were very solid and gave me the needed support I hoped for when requesting them.

Prior to the meeting, Lydia had a good visit at the dentist. I immediately took to Dr. Murphy and her calm gentle spirit. As expected, Lydia didn’t mind having her teeth cleaned. Boy are they white now! I didn’t realize how much the vitamin with iron had dulled them. Dr. Murphy assured me that it wasn’t permanent discoloration, but something that would continue to happen as long as she was taking the vitamin. She told me to just bring Lydia by if she needed a touch up before the next cleaning. How thoughtful! As far as my concerns, Lydia’s teeth are indeed short. Dr.Murphy attributes it most likely to the Dilanton Lydia took for her first six months of life. It is know to thicken the gums. This also explains why Lydia’s teeth take so long to break through. The tough gums have slightly delayed the eruption of her teeth. This gum problem should resolve with time. Other than that, I learned that her teeth that are rotated may straighten a little with time, but basically, Lydia inherited that feature from one of us. :o)

We were so excited to have the day behind us that we went over to have a victory dinner at a friend’s house. Lydia was getting fussy before dinner and didn’t sleep much that night. Wednesday she again became quite fussy at dinner and went into a seizure requiring Diastat. At least we all got a good night’s sleep. Lydia was a zombie Thursday, refusing to sleep in her bed, but preferring to sleep in her highchair instead. Go figure! Lydia VERY rarely sleeps anywhere other than her bed. She had been a little stuffy, so we can only guess that she could breathe better upright.

Thursday night, again she was restless and up in the wee hours. She started off Friday like the day before, dozing upright, but by noon, she was screaming and eventually seizing. The Diastat nap was a relief for all, but it didn’t last long enough. Lydia woke up for her grandfather to check her ears and sure enough, one of them was infected! While I was off to the store to get the antibiotic, Lydia started seizing again requiring more Diastat. Despite the two doses of Diastat, two doses of Chloral Hydrate (sleeping medication), Ativan, Tylenol, decongestant, and vapor rub Lydia still couldn’t sleep that night. From 2AM to 8AM she slept maybe three hours, and not consecutively!

Saturday was much like Friday, except that Lydia also started throwing up before her two seizures and the last one required 20mg of Diastat. Sunday, she only had one dose of Diastat, but remained inconsolable. A larger dose of Chloral Hydrate did finally allow her to sleep well last night. Today, I took her to the pediatrician. Dr. Anderson confirmed that the ear was already healing, but that Lydia’s Blood Count reflected a probable viral infection as well. Lydia’s throat didn’t look that red, but mine was. Funny how it only felt scratchy until I was told it should hurt!?!?!

Really it’s not that bad, but I am just eager for us all to be feeling good again. Dr. Pearlman’s nurse just called and gave us two options. We can go ahead and start Lydia on the ketogenic diet or add Trileptal, another anti-convulsant. We chose the latter for now. Other than being walked, being nursed is about the only thing that calmed Lydia over these very fussy days. It’s hard to agree quite yet to a diet that would not allow nursing, because breast milk would be contraband. Just last week I finally started getting the hang of making Lydia’s baby food. The ketogenic diet would require me to make her food as well, it just wouldn’t be all these nice fresh fruits and vegetables like I’ve been fixing. I feel like we’ll try it before this is all said and done, but I ‘m still resistant. Lydia would have to be hospitalized, probably in Savannah to get started on the diet. At least that aspect would be much easier to manage this summer while Jason is off and could go with us. Please pray that God will give us wisdom and a peace about our decisions to come.

I just gave Lydia her Diastat for the evening, at least I pray that’s the only dose she’ll need before bedtime. For now she’s peaceful. Peaceful hasn’t been a word we’ve been able to use to describe many of her waking moments over the past several days. I know that I got a little bogged down with the details in this entry, but the summary is that Lydia has had nine seizures requiring Diastat in the last nine days. She has eaten and slept little, but screamed and cried lots, partially due to illness. We’re definitely seeing one of the great benefits of living near parents. Jason’s parents stayed with Lydia and gave us a chance to get out some this weekend. What a BLESSING! My mom and her friend Jane will be here next week. Hopefully they will be able to play with a then happy baby while we catch up on our sleep!

Continued prayers and blessings,
Allison

Sunday, April 28, 2002 at 03:44 PM (CDT)

Well, the beginning of Lydia’s first opposing molar has broken through. She celebrates this fact by grinding it against its counterpart. What an awful sound! Her continued giggling helps to balance it out. Daddy is the only one who can consistently provoke that laughter, but she’s smiling at everyone. What cute dimples have been hiding in those cheeks!

Jason and I both are really enjoying this daddy’s girl. She is becoming interactive and playful. Jason even claims that she rolled her eyes at him today, the first time of many to come, no doubt! :o) She is starting to try to get away from diaper changes. It had been a while since Lydia had consistently rolled from her back to her tummy, but she has picked it up with great speed this week. She even rolled over onto Albert, the fat cat, and “hugged” him. She doesn’t quite understand the difference between patting and hair pulling though! :o) This girl can really pinch! I know that this is a great fine motor skill, but I have got to remember to forgo the sleeveless shirts until we can confine this new skill to productive outlets! My arms are tender!

Lydia’s clapping and legs pumping are certainly becoming Lydia’s expression of excitement. It is wonderful to have her starting to communicate with us in ways other than crying. She has learned how to shake that head “no” when she’s finished eating. It is quite funny. Her new favorite syllable to babble resembles something like a “ng” sound. We can’t figure out what language she picked this up from.

Lydia has really had a good week. The low points involved a little Ativan to calm her down a couple of times. And her napping has been a bit erratic, from none to three-hour stretches. It’s obvious that she naps better when she is on top of her game. That’s exactly where I need her to be the next couple of days, as we have a lot planned.

Tomorrow, after a morning including two therapy sessions, Lydia has an appointment with a developmental pediatrician here in town. What a concept, a LOCAL doctor! :o) I hope to get some direction from Dr.Young about what intensity of therapy would best benefit Lydia. This should help me know what to advocate for in our meeting the next day. Tuesday we have Lydia’s yearly review of her therapies. All of her therapists as well as other staff members from the local Early Intervention program will gather at our house to discuss our plan and goals for the next six months (officially known as an IFSP). Jason’s mom will be here for my support as I work to assure that Lydia receives the help that she needs. This meeting will take place after we get back from Lydia’s first visit to the dentist (also local)!

I called a couple of weeks ago to schedule a two-year-old appointment with the pediatric dentist, and was very surprised when they wanted to see Lydia earlier. Dr. Murphy apparently has slots reserved just for special-needs children, whom she likes to see as early as eighteen months old. My only concerns about Lydia’s teeth are that she has a couple that are rotated, and all of them are very short. These may not be problems at all, but with all the medications Lydia has been on, it can’t hurt to go ahead and get started with her dental care. I don’t expect that it will bother Lydia. She loves to have her teeth brushed and don’t forget that we put a finger toothbrush on the end of her squiggle-pen. We expect Dr.Murphy to be impressed that one of Lydia’s most consistent motions is putting that vibrating toothbrush in her mouth! :o)

Lydia’s first annual re-eligibility papers for her Deeming Waiver Medicaid are due soon. This supplemental insurance for children with great medical needs has been such a financial blessing. (It mainly covers our co-pays for Lydia’s appointments and drugs, which really add up!) The process is definitely worth it, but the many forms and “essays” that I have to compose aren’t much fun. The justification processes for both the Medicaid and the therapies require focusing on how severe Lydia’s needs and delays are. It also brings reason to consider the uncertainty of her long-term prognosis. Right now, my focus is clear and my heart is full of peace and contentment, but I can see the opportunity for spiritual warfare approaching.

I don’t deny reality, but at the same time, I refuse to let anyone limit my God or my child. Satan will not be victorious in his attempts to rob us of the joy of these fun days with Lydia. This joy and peace are such precious results from knowing and seeking to obey our God. It is truly an honor to be called a child of His and I look forward to what God has in store for us!

This coming week I ask that you also include another family in your prayers. We learned of the Gendel's through the Moss family, all of us linked by our children and their seizures. Their son, Joshua is scheduled for surgery to place grids to pinpoint his seizures on Wednesday, May 1. Joshua's web page is: www.caringbridge.com/nj/joshuagendel.

Continued Blessings,
Allison

Tuesday, April 23, 2002 at 08:15 PM (CDT)

I can’t believe that it is Tuesday already. I missed writing a journal entry this weekend. We were busy with fun stuff (date night, church, and meals with friends) and not so fun stuff (FUSSY baby). The antibiotic really seemed to be helping and Lydia was as happy as could be until Wednesday. She wasn’t even that irritable then, but had a seizure that opened the floodgates.

We went ahead and took Lydia for the immunizations that were scheduled for the next day. Since we’re starting to get her out more we felt that it was important to resume shots after almost a year break. She actually isn’t that far behind. Knowing that any stress on her immune system has tended to illicit seizures, we chose to remove that factor from our already complicated mix for a while as we were fighting to get seizure control.

She only had two seizures with this “cycle”, Wednesday and Saturday. They both responded to drugs, one to Ativan and the other to 10mg of Diastat. The magnet didn’t stop the seizures, but it actually broke her intense crying a couple of times. That certainly affirms that it was at least part neurological in origin.

After a particularly rough evening yesterday, I decided to let her pediatrician check her out this morning. The stinker woke up happier than she’s been in days and smiled at everyone in the office. She has even napped beautifully, after a week of few naps. At least we know that her ear has healed nicely. And for good measure they are checking her urine once again.

We have finally found something that helps Lydia with another problem. Senokot, a natural laxative, is chocolate flavored syrup that Lydia will drink in her milk. How nice to find something so easy to administer! And it really works. She lost two dress sizes overnight! Enough said. :o) We will use it for a three week tapered dose. This should definitely make Lydia feel better.

Another source of some discomfort must be her teeth. She has several molars that are so close to breaking through her gums. That would probably make me a little grumpy. :o)

Developmentally, Lydia has made some wonderful gains. She has starting clapping her hands and even initiating weight baring on her legs! The latter is something we’ve achieved in the past only in therapy with many tears. It’s still usually only for a few seconds at a time, but she has actually stood leaning forward on the sofa for two minutes straight! We are so excited. Lydia also has a new piece of equipment on loan that we affectionately call her “praying bench”. It is technically a kneeler that we strap her into to help build trunk upper leg muscles. This child really has her own private gym in the living room! :o)

Lydia has continued to eat well and take her cup. She even finished a cup for her grandmother while falling asleep, obviously not a traumatic thing anymore. And even the fussiest days have had some smiles mixed in. Tonight she was out right giggling at her Daddy! :o) I just LOVE that sound.

I also enjoy getting things accomplished. The past few days I have had a lot of household tasks as well as Lydia tasks that I’ve actually been able to resolve. Everywhere I turn, even in the mundane, God is constantly blessing us and giving us opportunities to glorify Him. The termite man and I had a touching conversation about his seizures and he committed to pray for our special little girl.

Continued Blessings,
Allison

Saturday, April 13, 2002 at 06:54 PM (CDT)

The beginning of last week Lydia was taking more Ativan and Diastat than she had in a while. She was increasingly irritable, seizing, and ate and slept less. We were all scratching our heads until we went to Savannah and saw her neurologist on Wednesday. I asked him to check her ears for me, just in case. Sure enough she had an ear infection! We started her on an antibiotic that night, but even before that she had already started turning around. We attribute it to having her stimulator turned up.

Dr.Pearlman increased the amplitude of the pulse on Wednesday, April 10. It was the one year anniversary of her surgery to have it implanted. We had originally been told that it could take up to a year to see results. That sure sounded like a long time. Now, even though it hasn’t been the ultimate answer for Lydia’s seizure control, we are grateful that she has it. She even napped in the car on the way home from the appointment. As I’ve mentioned before, Lydia just doesn’t do that.

Since we’ve been home Lydia has very little Ativan and no Diastat (less irritable and no prolonged seizures). Tuesday I started back with an evening dose of Chloral Hydrate to help her sleep. It has worked so well that now I’m a little chicken to give it up. She is sleeping great at night and napping fairly well during the day. She is even eating more eagerly. I just can’t believe that the VNS increase, antibiotic, and a few good nights of sleep have made such a difference.

Of course the other aspect I must mention is that the squiggle pens finally came in the mail. We were all excited. Lydia was so calmed by it that we didn’t even have a fussy warning before her Tuesday seizures. It was strange. Today Lydia hasn’t been fussy either, but we can’t get her to nap. She keeps us wondering! She has been babbling more than usual and still smiling and patting.

It is such a blessing how just a few good days make the weeks of bad ones almost melt away. I compare it to the way that the intensity of labor was dimmed from my memory as soon as I held Lydia for the first time. :o) Immediately it was all worth it!

It has continued to be worth the drive to Savannah to see Dr.Pearlman, and now Dr.Adams. We took pictures of our trip that I will post. Both doctors willingly answered our questions and tried to help us further understand Lydia’s conditions. Dr. Adams explained how Lydia’s eyes are still immature, more like a young infant’s. This is seen in how intermittent her crossing is. It will stabilize as the vision portions of Lydia’s brain mature. Dr. Adams was pleased with the increased strength in Lydia’s left eye and instructed us to continue patching.

Dr.Pealman also took time to explain that Lydia’s cortical dysplasia (diagnosis based on pathology from removed brain tissue) may be a large force behind her developmental delay. Because her seizures are still so difficult to control, it seems that there may well be at least one, if not several more areas of her brain that never formed normally. He explained that this means that Lydia would likely regress without therapy, therefore the slow progress we are making is very significant and celebratory.

I’m back to the point of needing to do more research to understand this aspect of neurology. I had asked him to discuss her delay because I am getting ready to request further therapy as Lydia’s yearly review comes up in a few weeks. The therapists have recently reported that she is at a four to six month level developmentally.

My friend and I laughed as we concluded that Lydia is like an almost nineteen month old with a six month old brain, so I must be a twenty-six year old with a fifty-four year old brain! I’m sure to turn gray soon! :o) At least I’ll have strong arms though. Lydia is up to 25 ½ pounds and 32 inches long. She put on three pounds and an inch in five weeks.

Lydia hasn’t been the only one growing around here. God is continuing to teach us so much. With it’s ups and downs this past week was a struggle, but the fruits were sweet. Jason and I have both been able to devote some time to personal Bible study and God has blessed it. Through our trials, we have been broken and made more teachable. Oh, to remain that way. What growth could result! It is both exciting and challenging.

Continued Blessings,
Allison

Friday, April 05, 2002 at 02:39 PM (CST)

We had a wonderful Easter. If Lydia was going to be in any nursery on such a busy day, we figured that the one where her grandmother was would be the best choice. Therefore we went to church at Mulberry. It was a special treat getting to hear the lovely classical music (a sweet Hallelujah chorus, acappella anthem from the balcony, and even Widor’s Toccata.) Then we had a nice lunch with extended family. Lydia sat at the table in her daddy's old highchair and ate with us. She tasted ground up versions of most everything on the table. We remembered how last Easter Lydia was eating with an feeding tube. After lunch we took a few pictures that I’ll post. Of course we all thought Lydia looked lovely in her Easter attire! :o)

Easter preparations were fun as well. Jason and I spent Saturday shopping and having dinner with friends while Lydia played with her grandparents. That was the longest time I’ve ever been away from her. I still can’t believe that she is finally sufficient enough to take food from others. Only very recently have I been able to even consider going off for the day!

Since the weekend, Lydia hasn’t been eating solids as well. By last night I had to force her mouth open for every bite by holding her nose. That’s no fun for anyone. The squiggle pen that Lydia loved so much died and we hadn’t been able to find another one anywhere. Nana tracked one down on the Internet though. It can’t get here soon enough! Whenever Lydia wouldn’t open up for me in the recent past, I could just tempt her with the pen and she would eagerly pop open her mouth in anticipation.

Today she has actually opened her mouth some for me. I gave her the morning Keppra BEFORE breakfast to see if it would help any. I don’t know what the relationship could be, but I remembered how well she ate all of the sudden after her Diastat Monday night.

Monday night and Tuesday morning Lydia had a couple more seizures that involved her whole body. As I said we gave her the Diastat Monday, but waited a little longer Tuesday and the seizure actually stopped on it’s own. She has been more irritable and vomiting directly before the seizures. She’s also been very irritable at least a portion of each day since then. I am grateful that she has been sleeping fine and is continuing to have some happy times. The swing Jason has put up on the porch has been a real help in changing her mood occasionally.

We’ve used quite a bit of Ativan to fight the irritability. It does help and I’m glad we have it. I even took a urine sample in to make sure a UTI wasn’t behind this “neurological funk” but the culture came back negative. Lydia is just a mystery to her parents and the doctors alike. A couple of weeks ago, I had to fight back laughing out loud at bible study. The teacher had been talking about how God is a God of order, not chaos. I know that this is true, including his creation Lydia Vail Tripp, but her little body sure seems chaotic at times from our perspective! :o)

Not only has Lydia eaten more willingly today, but she has been happier too. I can hear her “singing” from her bed as I am typing. She even smiled at the phone this afternoon while talking to Moms (her great-grandmother Edwards). She couldn’t reach Moms in person, but as if she’d been picked up, Lydia patted the phone and pumped her legs. Another funny antidote from the week happened while Lydia was sitting up for her therapist. Julius (one of our cats) walked in front of her and she grabbed his tail! The therapist didn’t understand why I intervened when Lydia tried to put it in her mouth. Obviously she’s never felt how hard Lydia can bite, or tasted a mouth full of hair! :o) I pray that her present good mood will last through the evening and that tomorrow will be even better.

Continued Blessings,
Allison

Friday, March 29, 2002 at 12:46 PM (CST)

Well, something’s working. Lydia has sailed through her last three baths. We have been brushing, more diligently some days than others, but always before her bath. We also revisited the sink to see if maybe Lydia would feel more secure in the smaller space. Wow, does she fill it up! I’ll post a couple of pictures of the event. Make sure and notice the return of the TUMMY. :o) We have joked about how Lydia and our large cat, Albert, have been in a competition. Shockingly he weighed 21lbs at his check-up today! He needs to start loosing a pound for every one Lydia continues to put on!

Even though bath time has improved, Lydia has still had ups and downs this week. She hasn’t required any Diastat, but we did pull out the Ativan and ultimately increased her Keppra today. Wednesday evening she had a seizure while we were out on a walk. It had stopped by the time we got back home, but Lydia has fussed a lot and resisted napping most of the time since.

Boy is she still eating! Supper has become her BIGGEST meal of the day. One night she ate her baby food, then a whole mashed banana, then some food off of my plate. We couldn’t believe it. She was even dive-bombing for the spoon. We don’t even have to serve tapioca with every meal anymore. Lydia definitely still has a sweet tooth, but is branching out some. This morning she even ate COLD yogurt. She loves the La Crème Dannon vanilla yogurt, and it even has 5 grams of protein, which makes me happy. Lydia has been very resistant to cold, so this is a real breakthrough. She wouldn’t even think about eating the homemade banana breast milk ice cream I made for her birthday six months ago! :o)

The speed of the progress Lydia has made with her feeding still has our heads spinning. Every development has been so slow and seldom steady. We continue to be amazed. Lydia is down to nursing only a couple times a day, unless it’s a really fussy day. She is also taking one 8oz. sippy-cup of breast milk (we still have quite a stash) along with three meals of solids.

Jason kept her and got her to bed while I was out with friends Monday night. Also, Jason and I were actually able to go out on a real dinner and movie date last night, thanks to grandparent babysitters. Both outings were wonderful treats. The whole week has been special because Jason has been home on spring break. Friends have helped him get going on some big house maintenance projects including roofing the workshop! It has made us eager for summer break to be here and so we can have him home for even longer. We have been planning our summer vacation, Lydia’s six -month follow-up appointments in Miami. It’s a little daunting to think about how many days it may take to get there with a baby who will not nap in the car, and could go into seizures if she doesn’t nap! I pray for wisdom in the planning.

In summary, it has been a delightful week despite a few little setbacks. Oh, I almost forgot to report that Lydia sat up in a restaurant highchair for the first time this week. I sure wished I had my camera. How we have waited for the day she could do that! It may still be a while before she can handle the most popular style, as they don’t offer much support. We might have to start choosing restaurants based on their highchairs! :o) It is exciting to have her up at the table with us and happy enough to sit there as well!

Thank for all the sweet guestbook entries and emails this week. Joy is truly multiplied when shared with friends. You’d be hard pressed to keep me from continuing to delight in our little miracles and eagerly sharing them. It is truly my pleasure.

Happy Easter!
Allison

Friday, March 22, 2002 at 11:21 AM (CST)

In the last journal entry I mentioned the joys of having a special needs child. I want to share this excerpt from a poem by Erma Bombeck on the subject. She is recanting a conversation God is having with one of his angels.

“[H]ere is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'Momma' for the first time, she'll be present at a miracle and know it.”

Oh, how true, well all but “less than perfect” part. Although it may just be a game of rhetoric, I know that God created Lydia, perfectly according to His plan. I’ve been reading a great, yet challenging book “Trusting God Even When Life Hurts,” by Jerry Bridges. It tackles reconciling God’s sovereignty and goodness in the face adversity. The book ultimately concludes that our human minds are never going to be capable of completely understanding God, but this doesn’t excuse us from trusting Him. If scripture states that he is sovereign AND good, then it must be so. How simple yet how challenging at times!

All that said, the Tripp family is still swimming in good times right now. :o) Lydia did have a seizure requiring 10mg of Diastat following her Friday evening bath. After that seizure she was off for the rest of the weekend, as far as sleeping and her mood. She continued to eat though! And she started napping and smiling again Monday. Our only complaint is that she hasn’t slept through the night since. She wakes up for an hour around 3:00am and wants someone to play with her!?!?!?

Lydia’s quality of life has improved so dramatically this month. In our experience, trusting God is especially difficult when it’s your child’s quality of life that is so compromised. But with such a dramatic contrast, we are just tickled to see her smile at almost every interaction with us. She wakes up happy, with a big smile when we come in to get her. She pumps her legs in joy. What a treat! Lydia has also taken to patting us on the back when we pick her up. She is such a sweet child when she feels good. It’s just hard to believe that this is the same baby that screamed all the time not too long ago.

We keep increasing the amount of milk in her sippy cup and she always drinks it ALL. We are up to 7 ½ ounces at a time. She is taking it joyfully. Last night we stepped up the challenge with her solids and she ate a couple of steamed baby carrots and mandarin oranges! She just chewed and chewed.

I know our excitement must be humorous. It reminds me of a commercial I recently saw. There were a large group of family and friends silently sitting in a circle. There was a baby sleeping on the floor in the middle, which they were all staring at. All of the sudden the baby yawns and they each whip out their video cameras! Lydia should have no doubts that she’s loved. :o) At the risk of sounding silly, I’ll continue to share our small miracles that are so large to us.

Another novelty for us this week was actually going to a WELL-visit. Lydia gained a pound and a half over the first week and a half she started eating! Without the stories I told, the doctor would never have known that Lydia had had any problems gaining. She was right back up on the growth chart. At eighteen months she weighs over 24 pounds and is 31 inches long. She didn’t get any shots. We’re going to hold off a while longer before we resume immunizations. Dr. Anderson said that she’d never see Lydia look better.

We are so pleased with how Lydia is doing, that we are only changing a couple of things this week. We are trying to give her the evening dose of Keppra BEFORE her OCCASIONAL bath. :o) Also we have started brushing her regularly. It is supposed to help with sensory defensiveness, which may be part of the issue with her disliking the bath. So, between feeding and brushing, and feeding and brushing, Lydia is keeping me quite busy!

Continued Blessings,
Allison

Friday, March 15, 2002 at 08:27 AM (CST)

I have more GREAT news to report. Friday was just the beginning of what turned out to be a stretch of wonderful days, that are still going. We haven’t needed the Ativan or Chloral Hydrate since then. Lydia has been full of energy, smiles and NAPS. That’s not all she’s full of either! Lydia is EATING. This is the first time ever that we have gotten to the point where we can sit her in the highchair (not even reclining) and just feed her. No lights and music to distract her and no fussing at all! Even what we considered successful feeding sessions in the past have involved real circus performances. :o) Lydia just can’t get enough. By the third meal of solids yesterday (every three hours!) we had worked up to about 3/4 a cup of baby food. Everyone, therapists included are ecstatic. Yesterday’s therapist was going to treat herself with a milkshake to celebrate. :o)

Lydia’s favorite is tapioca pudding and “french fries” (potato sticks that look like french fries, but have a Cheetos consistency and Lays taste). She self feeds with the later while we feed her the spooned stuff. I keep trying different, more nutritional foods along with the meals. A whole tassel of things contributed to this success. The drug and stimulator changes which gave a happy and willing child. The junk food taste. And finally, a squiggle pen!

Even on her fussiest days, Lydia has calmed to vibrating toys. Because of this, her speech therapist bought her a vibrating ink pen for us to rubber band her spoon to. That didn’t work too well, but Saturday, I decided to just remove the ink part and let Lydia play with the pen. She LOVED it. She chewed on it for hours putting it in her mouth herself and with our help. By the next day, when we came at her with the spoon of food, she was eager for it. It appears that she finally had positive association with us sticking something in her mouth. I t had usually been yucky medicine up to that point.

We were scared to get our hopes up that this new development would last, but it’s been almost a week now. Everyone has taken turns with the new fun thing to do in our house—feed Lydia. It is quite novel after almost a year and a half of every nursing being my sole responsibility! Beth has been over. Jason has taken a turn. And my mom and Jane are here from Florida. They had no idea this would be happening. Yesterday, Lydia even took a four ounces out of a soft spout sippy cup. She’s slowly learning to suck on it, but at least is quickly figuring out swallowing the milk when it’s poured into her mouth.

The timing of Lydia’s feeding progress is almost comical. Just last week Dr.Pearlman and I were discussing the seemingly stagnant difficulties. For the first time Lydia was slipping on the growth chart and I was very frustrated. He was ready to schedule the surgery to get a g-button put in. I was still not quite ready. Thank you God for that hesitation in my spirit. I had no idea what He had in store for us, and so soon!

Not only is Lydia eating in her highchair, but rocking back and forth while sitting in it. She has started trying to sit up from reclining, bearing weight on her elbows while on her tummy, and constantly pumping her legs. She just can’t stay still. She is enjoying life! We have longed for this for so long. We continue to thank God and pray that it will last. Lydia isn’t even completely seizure-free, yet and doing this well. She is still having a very short seizure about every other time I take her out of the bath. She HATES baths and works up to a real fit. We haven’t resolved to stop bathing her. :o) I have stretched out the frequency though. Even over the course of a few days her feeding sessions have gotten neater, leaving her not quite as sticky. :o)

We just can’t get over seeing her open her mouth willingly for the spoon! This is a perfect example of the exceptional joy parents of special needs children experience. Sure there was much sadness, and frustration to get to this point, but you’d be hard pressed to find happier or more grateful parents than us this week!

Continued Blessings!
Allison

Friday, March 08, 2002 at 12:20 PM (CST)

Lydia is in her bed taking her first morning nap in weeks! I am very encouraged. We sure worked her hard enough this morning. She has been getting up around six in the morning the past few days and nursing back to sleep for another hour or so. Then she played in her highchair until 8:30 physical therapy. After that we packed up and headed to the park to play and have speech therapy. I put Lydia in one of the bucket swings for the first time and she loved it. She lasted a whole forty-five minutes in it. I couldn’t believe it. So, for now, if you can’t catch me at home, I’ll probably be at the park. :o)

Lydia’s irritability has been subsiding and the smiles are coming back. The turn started on the way home from Savannah, with some Ativan help. This was even before the drug changes, so I guess we can attribute it to the stimulator!?!?! Dr.Pearlman increased the strength of the electrical pulses on her stimulator while we were there. He also has increased her Keppra to 1500mg a day. This is the dose she was on back in July, but of course she weighs a little more now.

Lydia had three short seizures after fussing most of the way to Savannah. This confirmed that the former Keppra dose wasn’t cutting it. We are also inclined to believe that the irritability was at least partially due to sub-clinical seizure activity (seizures you can’t see physically). The other drug change is the addition of Claritin. We don’t know if Lydia has just had persistent colds or if she has her daddy’s allergies. Allergies can aggravate seizures though, so we’ll give this a shot to see if it helps.

As far as Lydia’s eyes, Dr.Adams was pleased with the progress. To my dismay she was glad to hear that Lydia’s strong eye was starting to turn in because that means that the weaker one is taking over sometimes. She explained that she wants us to continue patching until the eyes are equal in strength. Hopefully they will start working together then, but if not, surgery would be more likely to be successful under those conditions. Another sign that the patching is helping is Lydia’s lack of resistance to it. If she couldn’t see with the patch on, she should fight it more. Therefore, we have been instructed to keep it up with greater intensity. Lydia is now to wear the patch on her good eye basically all the time while awake.

Before, I was working it out where she got her patching hours while we were at home. This helped cut down on some of the many questions strangers have about Lydia. :o) In case some of you were wondering, the most frequently asked one is “How do they know what strength glasses she needs?” The answer is actually quite simple. Jason likes to respond that she couldn’t even read the big “E” on the chart, but in reality, since Lydia can’t tell us what she sees looking out through her eyes, the doctor just looks into through them. She looks through different strength lenses until she can see through Lydia’s eyes clearly, you know to see the optical nerves and whatever else is in there. :o)

For now, I guess I’ll just continue to learn patience and answer more questions about the patch too. A well-meaning stranger recently commented, that he’d be crying too if he’d just had done to him whatever Lydia just had done to her eye! :o) Peoples’ assumptions are funny sometimes.

The patience comes a lot easier since we are getting more sleep again. Thank you for the prayers. We are all feeling better. Lydia didn’t even fuss too much at her physical therapist this morning. We were figuring out one of Lydia’s new piece of equipment, a gait trainer. I am putting a picture on the page so everyone can see what his or her taxes bought us (through CMS)! :o) Thank you everyone! This $1600 contraption will help Lydia bear weight on her legs and eventually walk. For now it supports her between the legs and around the trunk, but can be adjusted to grow into a little walker.

It’s been a full week with promise of a fun weekend. Last night Lydia was almost chuckling at her daddy “eating” her neck. What a wonderful sound! She even found a new food she likes to feed herself, Cheetos! (At least I got the brand from the health food section.) She just woke up from her nap quite happy. I should take advantage of this mood and pull out that junk food for her to chomp on. :o)

Blessed,
Allison

Monday, March 04, 2002 at 05:53 PM (CST)

Lydia’s been seizure-free for a week now. This doesn’t mean that it’s been pure bliss, but it could be much worse. Lydia hasn’t gotten back to “normal” since we’ve been back home. She has been increasingly irritable up to last night. Today a little Ativan took the edge off, but didn’t last long enough!?!?! She isn’t sleeping much except after her evening dose of Chloral Hydrate. As mentioned before, this is a definite sign that something is still off in her head. She has just been acting weird too.

Speaking of weird, we did try a bottle Wednesday night. Lydia really enjoyed playing with it, but more as a toy rather than a food source. She actually grabbed it with both hands and pulled it back and forth to her mouth. Over a couple of hours, chewing and a little sucking added up to a mere two and a half ounces of consumption. :o)

The poor girl hasn’t been able to settle down enough today even to nurse much. She’d been nursing well since back home. The medications that she received for the last seizures were very quick ones to leave the body. One advantage in this (other than a short hospital stay) is that Lydia quickly perked up enough so we could take out the NG tube. Less than 24 hour in the hospital and less than 48 hours with the NG tube! Both are reasons to celebrate.

Lydia’s development didn’t suffer much at all from this last downturn. I know she could do more if she spent less time and energy fussing. She cried through it, but did well with therapy today. Hopefully Dr.Pearlman can give us something else to try to help make her happier.

Beth, Lydia and I will be taking off for Savannah tomorrow evening for Wednesday morning appointments. We will be seeing Lydia’s eye doctor as well as her neurologist. We have diligently patched her stronger eye the past six weeks to help with the crossing. Even with that and Lydia’s new glasses, I’m still not impressed with the progress. We’ll see if she recommends surgery at this point or more patching.

Please add the health of the adults in the house to your prayers. A long stretch of sleep is currently a fond memory rather than a reality for us. We are fighting the effects. I can feel the crud trying to creep up on me. At least maybe Jason can have a restful night while we’re gone. :o)

Continued Prayers and Blessings,
Allison

Oh, also thank everyone for the words of encouragment in guestbook. I haven't taken much time to catch up on emailing, but I was thrilled to hear from many dear friends.

Wednesday, February 27, 2002 at 06:20 PM (CST)

Home again! It’s amazing how even a one night stay in the hospital will multiply one’s appreciation for being at home. :o) Dr.Pearlman helped us decide to come on home. He described Lydia as a time bomb, waiting to go off, but we can’t see the count down. It could be hours or weeks before the next status seizure, so why wait around at the hospital?

Lydia’s Keppra dose was doubled once again today bringing her to 1000mg a day. The lower doses just hadn’t given Lydia more than a couple days in a row break from the seizure cycle. Before we turned in for bed last night, Lydia ended up narrowly escaping a Phenobarb loading dose. She got a couple of doses of Ativan and four more 10mg doses of Pentathal. This finally stopped the resurfacing seizure activity in her eyes.

The large amounts of drugs didn’t interfere with her new sleep pattern. :o) She STILL woke up a little before 4:00 AM. At that time she got her second NG feed of the night. Lydia had definitely realized that her tummy was empty, but she was still too loopy to nurse. I appreciated the easy-going supportiveness of the staff with this stay. I’m not used to the orders being so considerate of my preferences. I was included in a true team approach. I managed Lydia's feeds and they gave me a vote in the drug choices. Extra effort was taken to hold off on one of my least-favorite drugs, Phenobarb. I could taste the dread of the long wean that would certainly have followed.

It felt like being with family, working together to make it through the night. Our needs were tended to and even anticipated. Lydia’s very first ever PCIU nurse was on. Barry looked out for me and found a cot so I didn’t have to sleep in a recliner. :o) Sleep was still scarce as the activity level in the unit was high.

Sadly, even though they couldn’t say, the faces of the staff revealed volumes. During our short stay there were two unsuccessful codes in the unit. Our EMT friend heard the last code and came to make sure it wasn’t us. Again we were reminded to be thankful.

Lydia has been awake, nursing some and a bit fussy today. Her local grandparents have been able to help out by taking turns holding and rocking her since we’ve been home. I can’t believe the endurance of John’s arms (four hours and counting!). Jason and I have even gotten a chance to take a nap. The hilarious detail of the afternoon is that Lydia has been calmed with a pacifier. Lydia hasn’t taken a pacifier for over a year now! I must admit that I pulled it out just to satisfy Beth’s curiosity. Maybe we should try a bottle tonight!?! Did the yuckiness of being in the hospital make even a pacifier shine in comparison? I am grateful to have a comforting tool that others can offer. Lydia will forever baffle us even with the silly little things.

I haven’t pushed her physically today to really see what she can still do, but her muscle tone actually feels good. I expected her to be much floppier after all the seizing and drugs. She is one amazing little girl.

Thanks again for the prayers.

Blessed,
Allison

Tuesday, February 26, 2002 at 07:16 PM (CST)

I regret to report that Lydia and I will be sleeping in the PICU tonight. After starting Keppra, Lydia has had seizures requiring 10mg of Diastat four of the seven days. She had been awaking around 4:00 AM every morning since the first seizure after the drug-free stretch. This was one clue that whatever was going on in there was not resolved. After fussing through her morning nap, Lydia finally went down around lunchtime. When I went in to get her up for therapy at 2:00 she was seizing, mostly facial and left arm. Dr.Pearlman talked me through the fourth 10mg dose of Diastat, but it only slowed the seizure rather than stopping it. By the beginning of the third hour of the seizure, we had Lydia in the PICU where she received one more 10mg dose of Valium and then some i.v. Pentathal before the seizure ceased.

We did give her a little oxygen on the way to the hospital and she needed a little help breathing immediately after the i.v. medication, but has since then been very stable. She even woke up and batted her toys around for a little while and gave us a few crooked smiles. She’s not with it enough to realize that she should be hungry. She will be kept at least through the night for observation and i.v. fluids. Her Keppra dose has been doubled to 500mg a day.

In a warped way, it was nice to see many old friends at the hospital and catch up with what all’s been going on since we were last there in July. They hadn’t forgotten how difficult of a stick Lydia is, and she stayed in character today. They did eventually get a line though, for which we are very grateful. She was also poked for a urine specimen to make sure that she doesn’t have a UTI. She has had no symptoms of illness.

Lydia’s actually been doing pretty well, other than the occasional seizures. She has started sitting in her highchair, rocking back and forth while eating some. Her Grandmother gave her some vanilla pudding and it was a hit. Lydia has been doing some self-feeding with long skinny crackers too.

We are thankful for each of the small steps of progress including RELATIVELY small amount of drugs required to stop this very long seizure. Another reason for celebration is the receipt of a hospital bill. Yes, you read right. I opened a bill from one of the physicians’ groups in Miami with a balance due of zero. This is significant because just last week the balance was over $7000! After sharing our situation with them, they chose to write it off. What a blessing. When I get back home I need to modify the letter that I sent them and send it out in mass! :o)

Thank you for your continued prayers.

Allison

Thursday February 21, 2002 10:24 AM CST

A new little person continued to immerge from Lydia’s body this weekend. We had to make introductions. “Hello, I’m Mama and this is Daddy. You must be Lydia.” :o) We had a blast. (See an example in the photo album.) Saturday night, Lydia started fighting sleep again, although pleasantly. In retrospect, this was the only sign we had leading up to her first need for Diastat Sunday afternoon. Of course we were a bit disappointed, but it was still a great happy baby day. Since then, Lydia has required an average of one 10mg dose of Diastat a day to stop various types of seizures.

In line with her new altered sleep pattern, Lydia woke up early yesterday morning and persuaded us to let her take Jason’s place in our bed when he got up. Us girls drifted back off to sleep, but then I awoke to a vibrating bed. Lydia was having a generalized (head to toe) seizure. I haven’t seen one of those out of a hospital setting in a long time. Therefore, Lydia started back on an anti-seizure drug, Keppra, yesterday afternoon. She is only taking 250mg a day compared to her November dose of 1500mg a day. Lydia was taking Keppra during that wonderful pre-surgery week in Florida, so we don’t expect it to weigh her down too much. Keppra is supposed to be a great drug. We are praying that it will be more effective this time, with her post-surgery progress.

The seizures have resulted in a slightly fussier baby. We are fighting for naps in her bed again. Being held and nursing are Lydia’s requests for how to spend her days. This does mean that she is staying hydrated though. Lydia pulled her NG tube out Saturday morning and we have been able to leave it out. We took turns forcing solids in her to help bridge the gap as she continued to pick up the pace with nursing.

God really renewed our joy with the fabulous drug-free week. We are certainly learning how joy extends past circumstances though. This new batch of seizures hasn’t rocked us emotionally like I’m sure Satan would have liked. We are still thrilling in the smiles admits the fussiness and have actually been indulging in time for ourselves. Jason’s mom was able to drop by last night and babysat while we got out for a walk. Mallory’s mom, Camille, even came by one morning and kept Lydia while I got out and did some shopping. What a blessing! One of the hardest things to figure out has been how to keep a balance with taking care of Lydia and us as well. I thank God for the willing helping hands this week that no doubt have contributed in keeping our spirits high. God’s timing once again was perfect.

Blessed,
Allison

Friday February 15, 2002 12:00 AM CST

We are having a good time around here! Wednesday night Lydia started sleeping all night without Chloral Hydrate. She’s sleeping ten hours too! We all feel more rested. She is definitely happier and she’s napping too. She is keeping down her feeds and nursing a little more each day. Her last dose of Zonegran was Sunday night. As it continues to get out of her system, we pray that Lydia’s appetite will pick up and allow us to ditch the NG tube for a long time. It is such a strange sensation not giving Lydia ANY medicine. She is only getting milk and a normal baby vitamin. WOW. We’re feeling a bit wild and crazy around here. :o) Again, we don’t know how long it will last, so we are really enjoying it for now.

It’s hard to believe that Lydia isn’t just seizing away. I have witnessed a few episodes of twitching while she is sleeping, but that’s it this week. It’s amazing. We’ve only used the one dose of Diastat in four weeks. This is excellent. Lydia is much more alert and interactive. With less meds and new glasses, she is actually looking at her toys and purposefully batting at them. It’s so much fun to see. Her occupational therapist who came yesterday was just tickled. She had never seen Lydia happy, or not screaming for that matter. Her kids were going to get icecream last night to celebrate Lydia’s good therapy session. :o)

Lydia and I even met her speech therapist at the park this morning. It felt so good to get out and soak up some sunshine. I enjoyed visiting with the other mommies as we hung out for a while after the session. It just amazes me how much can change in such a short period of time. We are having fun, Lydia included. She is giving out many more smiles. Cuddling is stilll one of her favorite passtimes, but not a constant necessity to keep her calm. Tummy-time is also a new favorite for play and sleep. She is picking up her head and rocking back and forth by pushing with her legs. If she could have a stretch of days like this, I’m sure she could really dazzle us with her progress.

I’m shocked at how much more I can accomplish in our present state. I’ve actually been cooking and loving it. Thank you Lord for such a BLESSED week.

Excited and Grateful,
Allison

Saturday February 9, 2002 5:11 PM CST

New photos, well, from Christmas. My dad got a scanner and sent this my way. I don't know when I've made journal entries two days in a row, but this seemed noteworthy. :o)

Not much has changed since yesterday except that we did have to break out the Diastat last night. It made for a sweet, though sleepy, baby for Grandparents to keep while Jason and I went out to the movies.

The NG tube is also back. At least there has been no vomiting, even with full eight ounce sized feedings. :o)

Allison

Saturday February 9, 2002 10:52 AM CST

It has been a week plus of mixed blessings. First of all, we all have been getting some much needed sleep due to the Chloral-Hydrate. There is definitely a reason why it isn’t over the counter. It would be too tempting to parents. :o) Initially, the help sleeping at night really transformed Lydia’s overall temperment as well as schedule, both for the better. She was happy and started taking naps again! By the end of last week she also started sitting up by herself for many minutes at a time!!!! It was an incredibly rapid developmental leap. Jason and I are reveling in it. Lydia also started baring weight on her legs for many seconds at a time, another milestone that we have been long awaiting. The main damper was that Lydia was absolutely refusing even to nurse and I couldn’t get more than four ounces in her NG tube at a feeding without seeing it all come back up. The Zantac did not make any notable difference. Lydia kept the laundry train chugging along. :o)

This week, the naps stopped again and Lydia has been very irritable. Since these symptoms as well as her loss of appetite could be due to the Zonegran, Dr. Pearlman had us cut Lydia’s dose in half Tuesday night. This will continue for a week and then we will stop it completely! We are praying that these symptoms will stop as the drug gets out of her system. It has been three and a half weeks since Lydia’s last dose of Diastat. That is by far the longest since surgery. Actually, I think this will make the fourth time ever! Her record is seven weeks. :o) This time her stretch just means that she hasn’t had a prolonged seizure though. In the past, Lydia really didn’t have any short seizures. Monday, before we even decreased the Zonegran, Lydia had a couple seizure episodes where she stiffened all her limbs and then had a scared look and scream. They were gone as soon as they came, but disturbing none the less. Wensday and Friday she has done the same thing. On the positve side, they were nice excuses to give her a little Ativan, our favorite “chill pill,” and ease the screaming for a little while.

Also, Tuesday before the new dose was given, Lydia up and started nursing again, full-force. I pulled the NG tube the next day after being assured that she was wetting enough diapers. It had been almost a month with that yucky tube this time. I was frustrated when Lydia’s wet diapers started tapering back off the next day. She is nursing all the time, but latching on funny. She is working on getting her first molar, as well as several other teeth. Maybe that is bothering her gums. I really don’t want to put a tube back down. Pray for wisdom and patience. Jason just got her to eat half a jar of turkey. It reminded me of the “what’s up” commercials where the guys are all making uuuuuuuuuuuuup noises at each other. Lydia would scream at Jason and he’d scream back at her. They had quite a chorus going on, but the food eventually went down. Need I add that solids are still quite a struggle? We started with a new Occupational Therapist this week who is supposed to be excellent at feeding issues. She has given us a few new exercises and techniques to try.

Dr. Pearlman wanted us to keep everything the same except the Zonegran. What a concept, changing only one factor at a time?!?!?! Lydia hasn’t allowed us that luxury very often. This means that she is still taking both the Chloral-Hydrate and Zantac at least for now. We keep hoping that things will settle down and Lydia will have a chance to take off developmentally. She is not quite to the the point where she was just before surgery when we had gotten her off most of her medications. At that time she started eating and even enjoyed it. Maybe, just maybe, that will be the case again as she progresses to the next developmental level. Something is going to have to break soon because right now she just isn’t taking enough of anything to meet her nutritional requirements. Neither Jason nor I want Lydia to undergo another procedure, but a g-button is the other option if her nursing and/or eating don’t pick back up. Yuck.

We have been diligently patching Lydia’s good eye and watching the weeker one work hard. Lydia got her new glasses this week and really responded when she tried them on for the first time. Her perscription is a bit different. It must be nice to be able to see clearly again. :o) The prisms are wild. We have taken turns looking through the glasses and they really do shift the images. When we look up after looking through them we are a bit cross-eyed for a few seconds ourselves. :o) I was pleased that the prisms are very subtle in appearance. Even looking for them they are hard to detect at a glance. They are still a cute pairt of gold wire rims with just a little more room to grow into for now.

Jason figured out how to work his Dad’s digital camera, so we’ll try to catch Lydia in a happy, or at least not too fussy, moment and post a new picture or two. I’ll let you know if I do. Also, on an administrative note, my email adress at the bottom has changed. It is nice to have Jason home today. It is actually quite right now. I don’t know what he has done to pacify Miss Lydia, but I should go get something done before she starts calling my name again. :o)

Blessed,
Allison

Wednesday January 30, 2002 8:56 PM CST

We are looking forward to turning over a new page on the calendar! It’s been a trying month in the Tripp house, but we have reason to hope for a better February. This month Lydia has had about a dozen seizures requiring Diastat as well as many days of vomiting, lots of inconsolable crying, and very few naps. She has been sick most of the days with different variations of a cold, presently including fierce coughing. The amazing blessing realized today is that she has been sick and sleeping little for more than a week without an obvious seizure!!!! Illness has always aggravated her seizures in the past.

Beth and I returned home from Savannah today after taking Lydia to doctor’s appointments. Her neurologist, Dr. Pearlman, is actually pleased with Lydia’s progress from an epilepsy point of view. I have been so tired and frustrated with the lack of overall good days that I hadn’t thought of it from his perspective. He said that he is thrilled that Lydia hasn’t had a seizure in over a week while sick and on only one seizure drug. I must mention that Lydia has never really been on as little as one seizure drug for any length of time since she was three weeks old! Dr. Pearlman attributes this progress to the surgery, not to any mystique of this particular drug (Zonegran).

The problem is that he said that the drug could be contributing to Lydia’s disturbance in sleep pattern, which could be making her so irritable. He wants us to try using Chloral Hydrate for a week to help Lydia get back into sleeping well at night. Along with this he has added Zantac on for the same trial period to see if it will decrease the amount of vomiting. After a week we will access the situation, and if we don’t see a reasonable change, then he is discussing just taking Lydia off the Zonegran. Did you notice that I didn’t say trading the Zonegran for another drug. Jason I both had the same reaction to the plan, “You mean no seizure drugs?!?!?!!?”. Dr. Pearlman’s smart response was, “What is the risk, that she might have a seizure?” :o) He is encouraged that we have been able to stop Lydia’s seizures more frequently smaller doses of Diastat lately and thinks that we could likely keep them under control even without a maintenance drug. If we try it and it doesn’t work then we would just try another, possibly a second shot at Keppra.

This could very well be a big week for us! Last week Lydia has a CT scan to make sure all the irritability and vomiting wasn’t due to something going physically wrong up there. The scan looked good to Dr. Pearlman. I will be mailing it to Lydia’s neurosurgeon this week for his opinion. I have been consulting with his nurse over the past week and they are being very supportive. It is so nice to have doctors with such vested interest in the follow-up of their patients. We have an equally warm and helpful case manager with our insurance company who has been helping me wade through some of the claims that are mounting up. I am getting ready to appeal some of the bills as I have quickly learned that all doctors in an in-network hospital aren’t in-network. The system is frustrating, but I thrilled to report that the largest bill came in today as PAID by the insurance company!!!! (Can you believe that the surgery alone cost about $150,000!) Thank you Lord for our insurance company, even though I spend many days frustrated with their system.

Oh, the eye doctor wants to try another month of patching. I readily admitted to her that this past month wasn’t a very valiant trial. Even with three attempts at ordering them, we never ended up getting the right kind of patches until today, and believe me we weren’t looking to push anything else that made Lydia upset the past few weeks. We will be more diligent starting tomorrow. This week I am also going to focus on trying to get Lydia to eat. I am ready to get rid of this NG tube again. There are constantly things to work on, but I am thankful for a new resolve and the bit of encouragement. It’s like a nice wind in our sail. And just as we drove up to the house this afternoon renewed, behind us came a group of ladies from Beth and John’s Sunday School class with lots of food for us. Of course, their timing was perfect as the Lord's always is. The blessings continue as do your prayers and for that we are grateful!

Content,
Allison

Sunday January 20, 2002 10:51 PM CST

My summary answer to “How is Lydia doing?” has been “Better, but not great yet.” This certainly describes this past week well. Lydia slept through the nights beautifully, without the aid of sleeping medications. That is definitely better! She has been less fussy and had fewer seizures during the days, also better. But she has been a bit twitchy, especially when drifting off to sleep, and has been throwing up in the evenings, not great. The tummy problem appears to be seizure-related and has been responding to an occasional small dose (for Lydia) of Ativan or Valium. These medications do make her extra sleepy and therefore compound the problem of hydration. We are supplementing with the feeding tube to make up for meals Lydia doesn’t keep down and the ones she sleeps through.

So what would great look like? Wednesday was great. Lydia was so happy and fun to play with. She just couldn’t smile enough. It’s difficult to get anything done when she’s like that, because we don’t want to miss a single one of her wonderful expressions. I certainly don’t want to ever take them for granted, but I pray for the day that they won’t be so rare. We want more happy days for Lydia.

Now, no seizures would be a league beyond great! We are still hoping that the new seizure medication, Zonegran, will help. This weekend it was increased to the target dose. It is still too early to make a final verdict about whether or not it will work to control her seizures. It’s getting tougher to really expect seizure-freedom from any drug though. Please pray that Lydia’s doctors will have wisdom to know how long to give this drug and what should be tried next if it doesn’t work.

On a side note, today is Jason’s Birthday! Lydia has given him a few sweet smiles for the ultimate present, but he would quickly add that she also threw up on him for the third night in a row. I welcomed him to what it’s like in a mother’s world. :o) He is looking forward to his MLK day off tomorrow. I am excited that I will have some help with Miss Lydia so I can catch up of all of the laundry! I never dreamed that such little person could dirty so much. :o)

Thank you for hanging in here with us. Your continued support is certainly appreciated. I know that it is more rewarding to pray for things with quick answers. We’ve continually seen God’s hand in Lydia’s life and know that He’s working beyond what we can see or understand. We are choosing to trust in Him even though the answer we’ve gotten at this point about Lydia’s seizures isn’t what we want, be it no or not yet. May our hearts be transformed to desire what God desires. I recently listened to my dear friend explain to her child that contentment means being grateful for what you have even when it isn't what you want. "But godliness with contentment is great gain." 1 Tim. 6:6 He's working on mastering this at four, and us at twenty-six. :o)

Blessed,
Allison

Wednesday January 16, 2002 2:40 PM CST

Lydia finally slept, in her own bed, all night for the first time and boy what a difference it has made for everyone! She woke up briefly at six this morning with more smiles than I’ve seen in the New Year. Once she had the comfort of being near Mama, she drifted off for another hour and a half of sleep. Wow.

It is going to be a bit of a struggle weaning her off of being held ALL the time, but I’m not going to complain. She is finally getting to the point developmentally that she knows the difference when she’s alone. I pray that this is just one of many times when our long anticipation and joy for Lydia’s developmental milestones will overshadow the frustrations that frequently accompany them.

Another victory today is that Lydia has eaten a whole banana, a jar of apricots, and a serving of rice cereal! It took two settings and over an hour, but she swallowed it down between protests. The first goal is to get her to eat, next we hope she will eventually enjoy it.

Lydia had two therapist come in to work with her today, as well as some play/work-time with me. We even actually found time to read together. I can't believe how much we can get done when she feels good!

Lydia's little Bible Storybook had a verse to memorize that I've decided to go ahead and start sharing with Lydia:

"You made all the delicate, inner parts of my body and knit me together in my mother's womb." Psalm 139:13

How important it is to remember to go back to scriptures in all situations. I have been struggling with coming up with scripturally appropriate wording to describe Lydia's medical issues and history. This verse invalidates the terms random or defect, doesn't it? God made Lydia just as He saw fit and God doesn't make mistakes.

She is laying peacefully in the bed right now. Tonight we will try to get her to go to sleep without the life-saving chloral hydrate (sleeping medicine) that the doctor called in for her on Monday. The only other recent medication change has been stopping the antibiotic. We don’t know if that was contributing to her insomnia or not. We are just grateful that it’s so much better.

Thanks for the prayers.

Blessed,
Allison

January 14, 2002 10:37 PM

Lydia has been put to sleep around 484 times in her life. God has blessed us with a child who is placed in the bed and drifts peacefully off to hours upon hours of sleep. This is a blessing he has never been stingy with. As I write this evening, Lydia has been taken to bed, changed, dressed, and drifted off to sleep without the first protest. Never has bedtime been more joyful!
Briefly, before sleep takes over my brain for the evening, I would like to thank the generous help of our family and friends in walking and rocking Lydia to spell her worn-out parents. Allison and Lydia spent time with the Helliers, the Tripps, and dear Sadie (who spent an entire workday with Allison today). Words cannot describe the excitement at the Tripp house tonight. I will end this before Allison starts proofreading. God bless you. He already has us.

Jason

Sunday, January 13, 2002 at 01:07 PM (CST)

Not long after Friday's entry, Lydia pulled out her feeding tube. And she has nursed well enough to allow us to leave it out! :o) The other good news is that she took two jars of babyfood yesterday, her ear infection is completely gone, she still doesn't have a UTI, and her cold has cleared up.

The bad news is that this leaves little reason to explain why she hasn't hardly slept for two days. She is very irritable. Last night Jason drove her around from 2AM-4:30AM so I could catch a few winks. They checked out the hotwheels sections at the two 24hr Wal-Marts in town, but didn't find any treasures. It quieted her though. She is nursing some for comfort, but that isn't even working to keep her satisfied. We have seen this type of behavior just a few hours before seizures in the past, but she hasn't had any seizure-like activity since Friday afternoon! That's a miracle.

I have Lydia out of the house now, letting a friend walk her around, so Jason can sleep. Please pray that we will all be able to get some rest soon. Poor Lydia must be exhausted, but her eyes just won't shut. I know that her Creator God knows what's going on even though the doctors are stumped. We need His merciful touch.

Tired and "Deaf,"
Allison

Friday, January 11, 2002 at 11:36 AM (CST)

The evening after my last journal entry was a tough night for Lydia and it’s been a long week for all of us. Including the 10mg of Diastat from that morning, Lydia had 50mg before we all laid down to sleep. We were given permission to use up to 30mg at a time if needed, and we almost needed to. Lydia’s seizures that night lasted a long time. We barely escaped a trip to the hospital. Each day this week has required Ativan, Diastat or both, but not as much as Monday. Her cold is getting better and the rash is almost gone. I took her in this morning to get her ear re-checked and it is also improving. The stuffy nose, plus all of the diastat has prevented Lydia from being able to keep up her hydration, so we are still supplementing her nursing with the feeding tube. The seizures have been involving her eyes and her left hand, foot and leg.

We continue to pray that the seizures will settle down when Lydia gets well. Her new seizure drug, Zonegran, is going to be increased a little early to get it into her system. Hopefully this will help keep the seizures at bay. It will still take another week before the final increase bringing Lydia’s dose up to her maintenance amount.

Lydia is happy and smiling, playing in her bed right now. She gets so fussy before the seizures, but after Diastat we have a completely different child. I can’t wait to have that baby under different circumstances, normal ones. Our week has been so familiar and reminiscent of our pre-surgery normal. We did escape the hospital this time, which is an improvement, but it has been a tough week emotionally for Jason and me. Jason was sharing with me that he hopes that he wasn’t too rude last night. A well-intentioned friend asked him how Lydia was doing and he responded “If you don’t ask, I won’t tell.” We will continue to have faith in God’s plan for Lydia, we’re just well aware that He never promised us that it would be an easy one. We do know that this is the cross He has given us and that He will give us the strength to carry it with joy. All we can do now is wait and see what’s next. I still have hopes that next week will be a great one for Lydia as she comes out of this illness and gets to show us what all she can do with that Phenobarbital now gone. That would be a journal entry I would be more eager to write. :o)

Thank you for your continued prayers.

Blessed,
Allison

Monday, January 07, 2002 at 03:22 PM (CST)

Lydia’s kept us busy this past week. She has been fighting the crud, but the crud finally won over the weekend. Yesterday a few more endearing pet names were given to her such as snuffy, little mucus machine, and sweet hack. :o) Thank the Lord that Jason and I are basically over it so we aren’t having to nurse ourselves as well as Lydia. She has been wanting lots of snuggles, which my brother was able to help out with for a few days before returning to Texas yesterday.

As with illnesses in the past, Lydia has had more seizures but not as many this time. She required more Ativan through the week and Diastat Friday, Saturday, and today. I was already concerned about Lydia’s hydration before she started throwing up this morning. She became just twitchy enough to make me think that the cause for the vomiting could have been neurological as likely as infectious. If it was a pre-seizure symptom, then it would stop with Diastat. So, I tried it rather than resigning to heading in for i.v. fluids and it worked! Yeah! I dropped a feeding tube to help load her tummy and the fluids are staying down.

I took Lydia on in to her pediatrician anyway and it ends up that she also has an ear infection. We are getting her urine cultured for good measure as well. Adding the antibiotic won’t be as bad since we stopped Phenobarb yesterday and are dropping another dose of Depakene today! Lydia also successfully finished up her steroid this weekend. What will we do with all our extra time now days?!?!?

As I mentioned earlier, the seizures haven’t been as frequent as with pre-surgery illnesses. This gives me hope that we are making progress. I can’t wait to see what Lydia will be doing in a few days as she starts feeling better and as the Phenobarb leaves her system! It’s exciting. Almost like Christmas all over again. :o) Since the Diastat today she is already so much more pleasant.

Oh, I almost forgot to mention that Lydia got to see her first snow here in Macon! I can’t wait to get pictures developed. It was beautiful. We are finally getting to dress her in all the cute warm outfits that have seemed out of season until recently! :o)

Blessed,
Allison

Monday, December 31, 2001 at 05:02 PM (CST)

We just got back from a road-trip to Savannah. Lydia has kept us traveling lately! She had appointments this morning with her neurologist, Dr. Pearlman, and her new ophthalmologist, Dr. Adams. This was the first extended car trip in a while (3 hours) and Lydia didn’t like it much. It has been a long time since she has been able to sleep in the car, certainly didn’t get that from her mother! She started off having fun smacking on Cherrios, but that got old after about thirty minutes. The drive back was more peaceful because we had to give her 10mg of Valium before we even got out of town. Lydia had been a little twitchy and zoning out intermittently with being fussy throughout the morning. We tried giving her an Ativan, but she started her throwing up that she so often does before seizures and we said enough.

You know you’re a mom when you are proud of the fact that you caught vomit with your hands! Sorry to all you non-moms reading this. :o) I can remember how that would have disgusted me in my former stages of life! We kept putting off the Ativan this morning because we wanted the doctors to get a better picture of her normal. The drugs like Ativan and Valium tend to straighten Lydia’s eyes.

We really liked the eye doctor. She spent a long time with Lydia accessing her ability to track and her fields of vision. She patched Lydia’s “good” eye while dilating them both to see if it might help the left lazy one to focus more and move out to center. While waiting for the drops to work, we went across the parking lot to see Dr. Pearlman. How great is that to have physicians work into your schedule?!?!?!

Dr.Pearlman’s staff was glad to see Lydia even though she was getting increasingly fussy. She even did some of her maybe seizure funny stuff for him and he agreed to the way we’ve been using the Ativan to stop that type activity. We compromised and agreed to keep the Phenobarb one more week, adding another step down in the weaning rather than stopping tomorrow after the size dose she has been taking this week. I can go with that. He also decided to have us go on and try a new seizure drug, Zonegran. It will be added very slowly as the Depakote is decreased and will ultimately replace the Depakote. The awesome thing about this new drug is that it is only once a day rather than three times!!!!!!!!! We can really live with that. It isn’t supposed to be sedating, but does decrease appetite. Continue praying that we can get Lydia to start taking solids again despite this. Now will give this new drug a shot and wait and pray.

After we rapped up with Dr.Pearlman, we went back to Dr.Adams and got her take on things. Lydia’s optic nerves looked great, which was a concern after having the brain surgery. It is apparently not unusual for the nerves to be damaged after having pressure in the head due to swelling. Other than that, she confirmed that Lydia’s left eye is doing most of the crossing, and we are going to try patching the right eye four hours a day for a month. We hope that this will encourage Lydia to use the left eye more and strengthen the muscles. If this doesn’t work, we will be discussing surgery to release the tight muscles on the inside side of the eye. Dr.Adams confirmed that Lydia does not appear to be able to see with the left half of either eye. This is what the doctors in Miami told us to expect due to removing the right occipital lobe. This deficit cannot be corrected, but Lydia’s next glasses will have prisms in them like they do for stroke patients. This will help bring what Lydia does see into her center so she will not have to turn her head as much to compensate.

Overall it was a successful trip with new things to try for little Lydia. Hopefully this seizure-like activity was due to the stress of traveling and will subside now that she is back in her own bed. Jason and I are still fighting off colds. Hopefully Lydia will stay well in the meantime.

We pray that each of you has a wonderful healthy New Year. I must be off to our big New Year’s Eve plans!!!!!! (Dinner with friends, then putting the baby to bed and watching a rented movie!) We are getting old before our time. :o)

Happy New Year,
Allison

Thursday, December 27, 2001 at 11:19 AM (CST)

Christmas Blessings to All!

First of all. Lydia hasn’t received any more Valium since Saturday! We threw in some Ativan with Lydia's morning meds a couple of days because of a little bit of funny twitching, and it worked. It never progressed into full-fledged seizures. This is especially note-worthy since we have all ended up with colds, and Lydia used to have lots of seizures with every illness. Thank you Lord!

We had a wonderful Christmas at the Tripp house this year. Lydia's short life has put us in such a different perspective. It certainly has made the holiday season more treasured and meaningful. Many insisted that our crazy year should excuse us from the tradition of a big Christmas brunch at our house, but why in the world? That's my fun! We have so many reasons to celebrate! So, we served eight on Christmas morning and nine the next morning (his family then mine)! And we had a real spread! :o)

For the Christmas evening meal, sixteen of us gathered at Jason's parents. It just so happened that the "kids" migrated to one table. Boy is that table getting older. :o) After a fantastic meal, some of us gathered around the piano for some good ol' hymn singing. Jason's grandmother, Graggy, and my cousin Kris took turns accompanying us as we had a wonderful time. We harmonized to How Great Thou Art, Joy to the World, Victory in Jesus, . . . My thoughts wandered as I applied each song to our current place in life. It is refreshing to remember that we have the ultimate victory even though the victory over seizures is still to be seen. Silent Night described another Christmas blessing. Lydia had been getting up through the night the past week, but the nights around Christmas were solid ones for all of us! Yeah! As the caroling progressed Graggy even threw in some jazz and we smiled as we imagined that Jason's Great Aunt Doris could finally really get down and dance this year, her first Christmas in heaven with her whole heavenly body. Singing about the boogie woogie shoe shine boy and Away in the Manger in the same sitting is some kind of family tradition huh?!?!

Lydia really enjoyed the music, but by the time we wrapped things up Lydia had had enough for one day. On the way home in the car, she pulled the hood from her coat down over her eyes and retreated into her own solace. Her great-grandparents (three of them) are eating her up. Jason and I took advantage having willing babysitters and went to a movie yesterday afternoon. Of those of us that went, we give the Majestic ten thumbs down. It was really slow! Lydia even took a few ounces from a bottle while I was gone. It wasn’t enough to live on, but enough to satisfy her until I returned. :o)

We are still enjoying having extended family here. It has been a Christmas we will all remember for a long time. God has been so good to us. This highlight of the Christian year has been a highlight for our personal year as well. We even got to go down on Lydia’s Phenobarb again yesterday, hopefully the last decrease before discontinuing the drug for the New Year! Excitement still lies ahead. :o)

Merry Christmas!
Allison

Sunday, December 23, 2001 at 10:13 PM (CST)

This week has been full of ups and downs. Lydia made it two weeks without Valium. That ended last night. She had a series of short seizures—left hand, then right hand, left foot, then mouth. Keeping things interesting. Each of them stopped merely with swipes with her magnet, but after three in less than thirty minutes, we decided that that was enough and broke out the Valium. The afternoon leading up to the seizures included exaggerated irritability and throwing up. It was all too familiar. One day, or even hour, I'm encouraged by how Lydia is doing, and the next I am concerned about what may still be ahead of us. At least we are having many reasons to rejoice mixed in with the uncertainty.

Even during the seizures, Lydia was enjoying playing with her toys and discovered that a rattle makes a lot more noise when it is banged on a hard object. Therapies continue to go well, except for feeding. Lydia has dropped solids again as quickly as she picked them up two weeks ago. If we get in a jar a day, we are doing well right now. She is nursing more to make up for it and still looks quite thick. Someone recently described her as “juicy.” :- )

Most of the week was filled with smiles and activity from the baby. It was remarkable how much slower she was after the Valium yesterday. In the past there wasn’t much of a contrast. Lydia had a better day today, but she’s still not back to normal. She did not have any seizures that we are aware of, but it was obvious that she was feeling yucky. Jason has been achy and lethargic with a sore throat, maybe Lydia feels a bit like he does, with teething on top of it. Her seventh tooth broke through and three more are not far behind. The fluid under her scalp went down and the need for pain medication with it. The steroid was decreased yesterday. We pray that regression doesn’t occur.

Lydia and I filled the week with Christmas shopping and meeting up with friends that we hadn’t seen in months. It was sweet holiday fun. Jason finished up grading finals Wednesday and has helped entertain Lydia while I have baked my heart out in the kitchen. My parents and Jason’s grandmother arrived last night and Jeffrey’s plane should have just landed in Atlanta. We have slowed down a little with Lydia’s turn in health, but are looking forward to a treasured holiday at home surrounded by loved ones.

Allison

I almost forgot to mention that there are different pictures on the photo page now. Check out that wonderful Lydia smile. :-)

Monday, December 17, 2001 at 10:59 AM (CST)

Overall Lydia had a good weekend. We haven’t seen ANY seizure-like activity since Friday and she hasn’t had any Valium for eight days. This is progress! The steroid wean was supposed to be completed this weekend, but Lydia wasn’t quite ready. A little fluid started building up under her scalp again, so we will start another, slower three-week taper. Displaced spinal fluid is known to cause nasty headaches, and we believe that Lydia is experiencing this. The addition of more Tylenol with Codeine has helped tremendously. She has been sick at her stomach and not as interested in solids the past few days, but hopefully as her head gets to feeling better, her appetite will return. Not taking solids well, translates into not taking medicine well either, so please pray that we can get all this stuff in her.

Adding the pain medication over the weekend made Lydia’s therapy session today much more productive than Friday’s. She is continuing to regain endurance with sitting is playing with toys with both hands. It is difficult to get her to turn to her left, the side with impaired vision. We are going to have to really work with her so she doesn’t get into the habit of neglecting that side of her body. I am grateful that we have the assistance of therapists to instruct us how to best help Lydia thrive. It really does take a village to raise this baby! :o)

These days of “normalcy” with a smiling happy child are so precious. It’s been a rough road to get our perspective, but I am glad that we are able to realize how incredible this is. Sure it is taking pain medication to keep Lydia happy, but she’s interacting with us and truly seems to be enjoying life. Jason and I feel invincible.

Thank you for your continued prayers.

Blessed,
Allison

P.S. We are thankful that we haven’t all been sick like we tend to be after long stressful hospitalizations. Some of you know that we are a family of cat lovers. We have four! Poor Julius is the only family member that is sick. Fret not, he’s keeping to himself in to corner far from Lydia. It is humorous as well as pitiful to see a feline sneezing all the time.

Thursday, December 13, 2001 at 04:35 PM (CST)

I am excited to have good news to report. Lydia hasn’t had any Valium since Sunday! This means that she hasn’t had any prolonged rhythmic seizures for four days. Lydia has had some short episodes of some funny questionable stuff, but nothing definitely seizure. This is progress. She is continuing to eat well—about three jars of food plus cereal daily! Our sweet girl is sleeping through the night and her disposition is improving. It is so good to see that smile again. Her fussiness lately has been attributed to boredom rather than pain or neurological junk and has ceased with toys and play. What a concept! She is starting to sit up better and will no doubt take off again as we continue to decrease the Phenobarb. Therapies are starting back this week to aid her progress.

The repeat blood work from Monday came back just like we wanted. Her AST (measure of how hard the liver is working) had been 70, but is now down to 31 (15-38 is considered normal). The pathology report was also reassuring. The finding read “cortical dysplasia.” In layman’s terms this means that part of Lydia’s brain tissue did not form correctly early on in the womb. The good part is that they assured me that this phenomenon appears to be completely random. It wasn’t due to genetics or environmental factors. I could not have done anything differently in pregnancy to change the outcome. Pat, the nurse, also told me that she has seen kids have residual seizures for even longer than this after surgery and eventually stop, for good. She is continuing to be hopeful with us.

We requested to switch epileptologists before leaving Miami due to differences in expectations of care. Dr.Resnick is now on board and has been caught up on Lydia’s case. He wants to hold off for a while longer before moving on to the next plan, which would probably be trying a new drug. Additional surgery will not be considered high on the list. That is fine with us. We wanted him to be informed in case Lydia did not improve and required more aggressive attention. For now we will relish in this period of calmness and pray that it continue.

We are enjoying preparing for Christmas. It has been decided that we have spent enough time away from home lately and therefor family is coming to us this year. It is thrilling to anticipate the reunion. My grandparents haven’t seen Lydia for over a year. Boy has she grown a lot! She was up to over twenty-three pounds at the last weight check. With all of this fun, it may be a while before a normal schedule sets in. Due to generous friends providing meals and eating out with Jason’s parents, I have yet to get into the kitchen a cook a meal yet. Tonight Jason is doing the honors. I could get used to this. :o) Maybe I’ll start off with the frivolous stuff and bake some Christmas cookies. Yummy.

I hope that everyone is enjoying this holiday season.

Blessed,
Allison

Monday, December 10, 2001 at 01:52 PM (CST)

This past week Lydia averaged a seizure a day. Most of them were identified by left foot twitching and most stopped with only 10mg of Diastat (usually took 20mg in the past). Everyone’s first response is: “Well, these seizures are better than the ones she was having right?” I understand the desire to have affirmation that Lydia’s seizure disorder must have improved with all that she was recently put through. The fact is that we don’t have that affirmation yet. The abnormal portion of Lydia’s brain that was taken out had to be removed, that verdict is not out. But Lydia’s long term prognosis is. There is still a possibility that additional surgery will have to be done, up to removal of the rest of her right hemisphere. There is also the possibility that even that wouldn’t eliminate the seizures.

That being said, unless Lydia becomes critical again, additional surgery would not be pursued for at least a couple more months. Her body needs time to recover before any additional stress is added. The theory has been that Lydia’s seizures should be more easily controlled with drugs now, even if they persist. I talked to both of her neurology nurses today and have requested that Lydia’s doctors put their minds together and devise a plan. Will we need to retry some of the drugs that didn’t work in the past? Should we start considering some of the more fringe drugs that stir up mixed reviews, or what?

Of course our prayer is that Lydia’s seizures are just signs that her brain hasn’t recovered and that they will shortly stop for good without further intervention. All other options bring unwanted baggage with them. The “Miami nurse”, Pat, quickly jumped to the conclusion that maybe Lydia should keep the Phenobarb instead of the Depakene. I am not ready to accept that as an option.

Phenobarb’s baggage is heavy. It has weighed down Lydia’s alertness and development dramatically, without proving to be helpful in maintenance seizure control. We are now half way into the weaning and this weekend Lydia’s ability to eat just mushroomed. By yesterday afternoon, Lydia was eating a full serving of rice cereal, a jar of meat, and a couple of tablespoons of fruit for each meal! This new skill has opened up the option for administering her medicines mixed in food rather than straight from a syringe. What a difference! It is unbelievable. The same process that used to take up to twenty minutes at a time now takes less than five and she isn’t loosing any medicine from spitting it out or throwing up. Thank you God for this affirmative answer to prayer.

Being together is also such an answer. We relished in our first weekend at home as a family. Jason looked at sweet Lydia and told her that he is so glad that he is her Daddy even though it is hard sometimes. She had a seizure at the Christmas party we attended. While watching us assessing Lydia’s subtle seizure and medicating her, a friend asked how we make these medical decisions and stay so calm. Jason without even thinking responded that it all comes with practice, which we’ve had plenty of. We watched a special on a set of conjoined twins Friday night. So much of their hospital experiences and responses really hit home. We empathized as the couple laugh when the doctors tried to gently warn them that the girls would have tubes and wires as they were coming out of the big surgery. These parents were quite “practiced” at that sight. It is sad when we sit down and think about some of the painful abnormalities that have become so “normal” for us over this past year, but we always eventually come back to the big picture.

The first seizure last week really threw me, but I since have been reminded that Lydia is God’s precious little creation. He’s not finished with her yet and we will hang in by her side as long as we are given the privilege. We will keep fighting for her health as long as God keeps doors open for us. It is all worth it. She is a joy and a blessing to so many, especially us. God’s faithfulness continues to be evident. The answers just aren’t yet. Thank you for your continued prayers.

Peacefully,
Allison

Saturday, December 08, 2001 at 10:17 AM (CST)

Guess who’s eating and talking? You’ve got it. Miss Lydia ate a whole small jar of baby food last night and again this morning! We’re focusing on meats to help provide the most protein as her head continues to heal. For breakfast this morning she ate a combination of turkey, green beans, and lamb! Is your mouth watering? :o) As far as the talking, can I say ma ma ma ma ma ma ma ma ma ma ma ma ma ma? Imagine an underlying tone of whine and you know what our house is sounding like. It is incessant, except when she nurses. Then, like a switch was flipped, the silence floods the house. The cats emerge from their corners with ears pricked. What’s happening? It’s so quite! :o)

The past few days have had their victories and setbacks. The eating and talking are definite victories. On the other side, Lydia has gotten into a pattern of heightened fussiness in the evenings ending with a left foot seizure, Valium, happiness, then bedtime. Last night the seizure was skipped, but it felt like it was so close. We pray that the pattern does continue to improve. Jason has been getting home about the time the time this all starts, so he hadn’t seen much of happy Lydia except after Valium. He is glad to be here for the more pleasant morning hours this weekend.

The neurologist was concerned about the Tylenol because it is one more thing to tax Lydia’s liver. The neurosurgeon was concerned about the Motrin because it is hard on her tummy along with the steriods. So, we have backed off on the pain medication, with the exception of early evenings and she seems to be handling it well.

We have definitely learned to rejoice in all the baby steps. It is amazing how she has just picked up the eating. She has made leaps and bounds of progress, and we don’t even start back to therapies until next week. I’m dreaming about the possibilities. Lydia might soon come to the point where she isn’t dependent on Mama for ALL of her meals. What a concept!!!!!!! I won’t start holding my breath quite yet. :o)

Thank you Lord for continuing to mix the blessings in with the uncertainty.

Grateful,
Allison

Thursday, December 06, 2001 at 07:56 AM (CST)

Lydia is back and forth between fussy and content. Jason was saying last night that he wishes that expectations of him were simply to eat, sleep, and be content until time for the next mealtime when it is considered appropriate to be fussy. :o) It ended up that yesterday’s irritability was pre-seizure junk. Her left foot started twitching again. It stopped quickly after the first dose of Diastat and Lydia’s disposition completely changed.

Between the Diastat and the lingering Tylenol with Codeine from earlier in the evening, Lydia was a drunk little baby, but at least a happy one. She grinned and squealed herself to sleep.

For the second night in a row, Lydia has slept through until my version of morning. Jason gets up in the five o’clock hour, but we girls don’t traditionally find that a proper time to interrupt our beauty sleep. :o) It’s helps a lot when I can get mostly ready before she wakes around nine. It has been so long since I have had to get Lydia and myself ready by myself. I need to get back into practice and speed things up.

Part of what takes a while is giving Lydia her medicine. Jason medicated her for the first time since we got back home and was overwhelmed. He asked if I had to give her THAT many drugs every morning. “Yes,” I replied “and a few in the afternoon as well.” He had noticed all the bottles but hadn’t wanted to Amom2lydiavcsk how many doses of medication she is on. The answer is sixteen. That is sixteen doses of medicine a day! Please add this to your prayer list. I am really having a hard time getting her to take some of them. Most are temporary. By the New Year she should be down to six a day, half of those just vitamins.

I am also cleaning her stitches twice a day, all seventy of them. The neurosurgeon called to check on Lydia yesterday. He was very encouraged that the spinal fluid under her scalp had responded so quickly to the steroid. This means that she will not have to have intervention to correct it, only a little more time. Yeah. He said that her brain could still be a little irritated from surgery. The part that controls her left foot, where the seizures have been seen, is the same part that was cut on. It could still be “mad about loosing it’s neighbor.” :o)

The blood also brought some good news. Lydia’s white blood cell count and CRP were both elevated when she left the hospital last week, but now they are normal. Her Depakene level (the anti-seizure drug we are keeping for a while) was a little low, but Dr.Pearlman wants to just watch Lydia rather than the level to determine if we need to increase her dose. As the Phenobarbital decreases in her system, the Depakene level should rise anyway. The only other outstanding find from the tests, was that Lydia’s liver is working overtime (her AST was 70, twice what it has ever been). We will get it rechecked next week.

We are still relishing in the fact that we are home. Friends have been bringing us yummy meals that have helped ease us back into the routine. It has never taken me three days to get up a Christmas tree, but this year it is, and that’s assuming I will finish today. We have the Christmas music playing and Jason and I danced to it in the kitchen last night. We might as well have some fun, right?

Praying for a happy seizure-free Lydia today, who takes her medicine well.

Blessed,
Allison

Tuesday, December 04, 2001 at 02:25 PM (CST)

It was like a family reunion at Dr. Anderson’s office (Lydia’s pediatrician). There were so many warm welcomes from all the staff including old friends and new “fans” which know Lydia from the web site.

The lab results should be back today. We are still hoping that isolated seizure Sunday was not foreshadowing. The blood levels may not tell us much, but we had to check and see if the problem lies there.

Lydia was very irritable yesterday, as she has been since surgery. Jason’s mom asked us to try giving Lydia more frequent pain medication. The medical team had expressed that she shouldn’t be in pain from the surgery after this length of time, but I must disagree based on my observations. Lydia has been a different child since I have pushed the Motrin and Tylenol with Codeine on a schedule! She actually grinned and giggled herself to sleep last night. This is quite a contrast to the baby who cried all day long except when she was nursing!

She isn’t back to her pre-surgery self yet, but at least she is now content. I was struggling with contentment when I thought that we were not going to be back in Macon until tomorrow. That was the earliest time Angelflight could meet my request. Friday, I called Dr. Anderson’s office to get a release for the flight and I expressed my frustration to Lydia’s nurse, Lisa. Lisa was so excited that we were ready to come home, she promised to find someone to come and get us earlier! Sure enough, a friend of a friend agreed readily. Jim Couch and his co-pilot picked Lydia and me up in Ft.Lauderdale Sunday afternoon and flew us to Georgia! Another dear friend of ours even picked up the tab for the gas. God’s blessings are so abundant. I could get used to traveling like this! :o) We just walked out to “our” plane, without even waiting in a line or being searched.

Just as the engine of the plane started Lydia’s left foot began twitching. It merely looked like she was wiggling her toes. I prayed and argued with myself most of the flight. Is it a seizure or not? Although it never spread to other parts of her body, eventually the answer was obvious to me and I medicated her. It wasn’t until we were almost to our house in Macon that her foot finally stopped. This was over an hour after I had given her the maximum prescribed dose of Valium. Jason and I were getting worried about what we would have to do if it didn’t stop. The last place I wanted to spend my first night in Macon was back in the hospital!

But as I said it did stop and we were able to have a nice visit with friends and then a wonderful night’s sleep in our own beds. Since then Lydia’s hands have twitched a few times, but I could always stop the movements when I held put my hand on hers. This means that they weren’t true seizures. These movements and the seizure could possibly be her body’s reaction to the Phenobarbital decreases. Dr. Pearlman, her primary neurologist, said that we just shouldn’t fly again for a while. :o) We hope to stay right where we are and leave the seizures behind!

It has been so nice straightening up the house and doing laundry! I have tried to quickly get everything unpacked and put up because I am ready to make a mess. A Christmas mess! We are going to get a tree this evening. I can’t wait. There is so much to be excited about. We spent last night with Jason’s family celebrating his Dad’s birthday. Being together to share special times is such a gift.

Thanksgiving continues,
Allison

Monday, December 03, 2001 at 06:37 AM (CST)

We're HOME!!!!!!!!! I'll tell you more about the flight arrangments later (God was good again!), but I mustn't write long because I need to get Lydia and myself ready to check in with her pediatrician at 8:30 this morning. I haven't had to get us both ready without help in a long time.:o)

Lydia needed to see the doctor for a routine follow-up anyway, but yesterday she had her first seizure in a week, so we want to hurry up and check her out. More about that later as well.

Thanks for your continued prayers. Lydia and I both loved sleeping in our own beds last night! It's good to be home.

Smiling,
Allison

Saturday, December 01, 2001 at 10:48 PM (CST)

Today is:

One week since Lydia's last seizue!

Tomorrow will be:

Six weeks since we left home for Florida and the day for our homecoming!

I'll sign in to let everyone know when we arrive in Macon safely.

We have a lot to be thankful for!

Continued Blessings,
Allison

Friday, November 30, 2001 at 05:56 PM (CST)

Six days seizure-free and still counting. Things appear to be slowing down, so I may not continue to post journal entries quite as frequently. I realized that it’s getting pretty dull when the highlight of entry revolves around a dirty diaper. :o) Right now dull is a very good thing though!

I updated the photo album this evening with some great pictures taken a few weeks ago. Lydia isn’t smiling as much as she was in those shots, but other than that her appearance isn’t very different now. She was started back on a 20 day tapered dose of steroids yesterday. This was an attempt to help her body reabsorb the fluid (mainly spinal fluid) that was pooling between her scalp and skull on her right side. It’s working beautifully! Since the swelling has gone down, her head has resumed normal shape. The famous nurse Pat called to check on us from Miami Children’s today and reminded that this medication also increases appetite. This helps explain why she’s pigging out so much. ;o)

The surgeon shaved such a small strip of hair, that the incision isn’t nearly as prominent as I though it would be, especially from the front. The stitches are dissolving nicely.

Another post surgery surprise is that Lydia’s eyes aren’t crossing any more. She has been wearing glasses since she was six months old to correct this problem with some improvement. The doctors couldn’t explain it to me, but it makes since I guess that if they took out the damaged part of her brain that dealt with vision, they could have removed the problem!?!?! We will follow up with her pediatric ophthalmologist once we get home to check it all out. Lydia is slightly far-sighted as well, so she may continue to wear glasses anyway. I don’t know if this is a lasting change or not, but how cool!

I will definitely let everyone know when we firm up the homecoming date! I know that God will work it out in His perfect timing, but boy am I ready.

Continued Blessings,
Allison

Thursday, November 29, 2001 at 11:37 PM (CST)

I have been busy today holding the baby and feeding her over and over again. She must have heard the doctors say that she needs extra protein and calcium to help her head heal. :o) She even ate most of a jar of chicken over the course of the day.

It has taken much time and effort over the past few days to counter the constipating effects of so many of the drugs that have been pushed through Lydia’s system. After 9 ½ ounces of prune juice, 2 glycerin suppositories, and a couple teaspoons of diluted Karo syrup (new trick offered by a dear nurse back home), we finally had a mess warranting a load of laundry and a big stain stick. :o) My friend congratulated me on returning to the concerns of a normal mom!

Hopefully Lydia will be a bit happier now. She is still rather fussy, but giving out some smiles and lots of cuddles in between. I’m sure seeing her Daddy again will help a bunch. We are working on a couple of options for return flights, but may not know anything for a couple of days.

Continued blessings (even a smelly one),
Allison

Wednesday, November 28, 2001 at 09:43 PM (CST)

Greetings from FT. LAUDERDALE! It took all day to wrap up the loose ends, but we did it. We took Lydia out into the fresh air and drove back to my parents’ house. I will be calling Angel Flight tomorrow to arrange transportation to Macon. I can almost taste it! It always feels so good to return home even after a pleasure trip. I imagine that this will be even sweeter!

As we were loaded up and almost out the door to freedom, the last of the many doctors caring for Lydia came in. He was concerned because Lydia’s white blood cell count had been steadily rising over the last few days. He hadn’t received the word that we were leaving and was planning to watch her blood work for a few more days, INPATIENT. Nooooooooooooooo, pleeeeeeease! He agreed to let us carry on if he could have one more lab test to assure that her count had started to drop. The elevation was likely just an effect of the steroids and the test would help determine that.

With a knot in my stomach I became impatient waiting for our nurse to return from lunch to do the simple heel prick. I expressed my frustration and one of the other nurses said she would get me the supplies if I wanted to do it. So I did. And the count had dropped! Thank you God.

We had to wait a long time at the pharmacy to fill the new prescriptions and then we hit Miami traffic coming home. But we made it!

I still hardly believe it. I don’t have to tell anyone not to take Lydia’s blood pressure through the night, tonight. And I can administer whatever drugs she needs without having to put on my slippers and wander through the hall to find Lydia’s nurse first.

Another bit of good news is that I was given a titration schedule for the Phenobarb that I dislike so much. Lydia is set to take her last dose on New Year’s Eve. It is already looking like a great 2002! :o)

Four days now since her last seizure. Normal sleeping and eating patterns are returning and her demeanor is improving. For just a couple of minutes after her midday nap Lydia even broke out and giggled at my mom fussing at my dad. :o) We all turned to see if we could believe our ears and she was GRINNING! We witnessed the first smiles in two weeks. What a delightful blessing.

Thank you for rejoicing with us. I’ve heard it said that sorrow shared is divided, but joy shared is multiplied. How true it is. I thank God for all who are sharing with us and I am beaming to have this positive report to give you.

Continued Blessings for Sure,
Allison

Tuesday, November 27, 2001 at 10:38 PM (CST)

The blessings just keep on coming!

Lydia slept from ten last night until nine this morning. It was wonderful. She even slept through the finger pricks at five thirty. The blood collecting was challenging, but actually went quite well throughout the day.

Lydia’s grumpies are still hanging around, but Motrin is helping. The ultimate baby comfort food is soothing her some as well. Yes, Miss Lydia nursed tonight for the first time in two weeks! She would stop only for short rest breaks but then went on and on and on—for over an hour! Many sighs of contentment were heard. I finally decided that I needed a little break and passed Lydia over to my mom who offered her some mashed potatoes. Lydia didn’t take a lot, but she smacked between bites and seemed to enjoy what she ate. I never dreamed that she would be taking solids again so soon after surgery.

This afternoon included an uneventful MRI that looked good to the neurologist. With this report, Lydia starting to eat, three days since seizures, sleep patterns returning, and the medical staff’s confidence in my abilities, our stay may be coming to an end soon. I can hardly believe it!

It was so nice to sleep in a bed next to Lydia’s in our own room last night. I slept well but did have a few interruptions. The nurse/patient ratio is quite different on the floor, and I find myself doing most of Lydia’s nursing care. At least maybe soon I will be doing it in my own house. I even let myself dream today that maybe Lydia’s future will soon require a different role from me—arranging play dates rather than dropping ng tubes. What a fantastic thought.

God’s loving hand is steadfast, and I know His love for my little one is vast. Whatever her future, seizures or not, I know He has a plan to prosper her and use her for His glory. I am grateful for the role I have been given in her life.

I need to wrap it up. Lydia is fussing a bit. Maybe she needs a milky nightcap. :o) A mother’s job is never done.

One Happy Mama,
Allison

Monday, November 26, 2001 at 10:30 PM (CST)

Yippee!!!!! Lydia moved to a private room on the floor today. It feels like a secluded mansion after the space she had in the room with six other patients in the PICU. We have our own bathroom, phone, full sized television, light switch, nightstand, and BEDS. The main epilepsy nurse, Pat, looked out for Lydia’s mom too. She rolled in a real bed for me to sleep in rather than a typical sleep chair. It’s amazing. Since I have a phone jack in the room, I will even be able to access the computer during the day.

I should get to what you are probably most interested in. Lydia is now 55 hours since her last seizure! The writhing has also stopped. I received a more detailed report on Friday’s EEG. The background epileptic spikes that had been there earlier in the week were gone. This is great news. They may not do another one while we’re here since Friday’s was so clean.

Tomorrow should be the day for the MRI (but you may recall that I said that about today too). :o) Orders have been written for Lydia to start up therapies as well, PT and OT. I am pushing to start moving her feeds from slow continuous ones to bolus feeds. I am trying to get moving back towards a normal feeding schedule even if mostly by tube. Having hungry/full cycles tends to make Lydia more interested in eating by mouth.

Yesterday I was so glad to see Lydia finally sleep. I didn’t have the heart to keep her awake during the day, therefore she ended up staying up almost all night. Sorry Mom. :o( We are working on getting our days and nights straight now. She is sleeping peacefully with the help of a little drugs. Maybe she’ll stay that way in this wonderfully dark, quite room! I politely ordered vitals not to be taken tonight as long as Lydia is asleep. :o)

Lydia’s central line was removed before she went to the floor. It was deemed unnecessary to put in another line. The hard part now could be getting blood for labs. It sounds warped to be praying for your baby to bleed doesn’t it? :o)

It has been a victorious day full of blessings!

From our private suite,
Allison

Sunday, November 25, 2001 at 08:36 PM (CST)

What a difference a day makes. Lydia has now gone more than 24 hours without the hint of a seizure! Her feeds are up to what she usually takes on a normal day and she’s sleeping again.

Last night Lydia received medication to help her rest. Let me say that Tylenol with Codeine is our friend! It worked beautifully. Throughout the day Lydia was crabby, but took several naps while I rocked her. This means that she even got a bit of “natural” (non-drug induced) sleep. :o) Between increased Phenobarb, Depacon, and this valuable sleep, maybe Lydia’s brain is finally going to settle down.

Tomorrow may include another routine EEG and a MRI as follow-up. If Lydia continues to improve, the only thing that would keep up from going to the floor is her vein access. They do not often allow central lines to go to the floor because of liability. This means she would probably need another line, not an easy task.

I hate to get my hopes up, but I am rationalizing that we might even leave this place before to many more days pass! There is another significant difference between Lydia’s recovery this time and after her July Pentabarb coma. Her residual seizures are stopping consistently with Valium. Valium can be administered at home! Even so, please continue to pray that they stay away.

Tomorrow I will continue to feel out the plan. If it would make everyone more comfortable, we could always stay in Florida at my parents’ condo for a little while before heading back to Georgia. All of the traveling family made it to their destinations safely. They don’t recommend traveling on one way tickets though. During one of the many searches Beth even had her comb confiscated. :o)

God blessed me with many wonderful blessings today. Again, his timing was gracious. Mom and Dad were sleeping today after staying at the hospital last night. I am especially grateful for a smooth day since I was soloing.

Continued Blessings,
Allison

Saturday, November 24, 2001 at 01:05 PM (CST)

We’re still here and not a whole lot has changed. During the wee hours of Thanksgiving morning Jason’s mom called to fulfill my request to be notified if anything changed. She informed us that the constant writhing movements from the day had finally given way to what appeared to be more true seizures.

Since then there have been many questionable episodes, some of which have been treated, and some not. I actually requested that Phenobarbital be added back on to help bridge the gap and get us home. (Many know how much I despise this drug.) :o) Her seizures have been involving random extremities and facial muscles. They haven’t appeared to be localized in the right motor strip, which has been in question. This is part of why I can’t shake the possibility that this could still be just manifestation of the stress that her brain has been under. Lydia had a routine EEG yesterday (45 min) which did not show seizure activity, but then again she wasn’t doing her thing at that time.

Oh how I was praying for her to wake up. She is more responsive and even sitting up in my lap with lots of help. But now I’m praying for her to get some sleep. Between the movements, and some kind of neurological disturbance that frequents days around her seizures, she has barely slept. By barely, I mean about four hours in the last thirty-six! Those dear hours were drug induced. Orders have been written for sedatives tonight. In the past, missing just a couple of naps has been known to trigger her seizures. I am sure that this deprivation is not conducive to the restoration of her brain.

Many nurses and doctors keep mentioning that we seem so calm and positive. It kind of perplexes me. Yes, we are still holding on to hope that this is still just Lydia’s recovery phase. Just as we are clutching onto Sovereign God. But, I would guess that we look more worn out than anything. Even though we have had so much extra help with the night shifts, exhaustion has set in.

We have had some precious time together as a family, and extended family. The decision was put off until yesterday, but we resolved for Jason and his parents to return to Georgia this afternoon. They have already left for the airport. This will give them a chance to catch up at work and be ready to return in case our journey here continues to last longer than expected.

My parents and I will continue to enjoy hanging out with my brother for another day before he heads back to Texas. Jason and I laughed when we saw his adorable clothing purchases for Lydia. We decided that only a bachelor uncle would willingly spend what he did on baby flannel pajamas! :o) He has good taste!

Friends from Ft.Lauderdale came for a visit yesterday baring lots of wonderful looking food. The timing is perfect. We will not have as many shifts of people to go out for food for now. They also came with report of a freezer for the extra milk. The doctors are so scared that Lydia will aspirate, therefore her feeds have been started and discontinued daily. She threw up with her seizure last night, so who knows when the time will finally come that more milk will go into her rather than the freezer on a given day. I am grateful that we now have a storage place. The dorm room sized PICU breast milk freezer was almost full yesterday! :o)

Thank you for your continued prayers.

Allison

Thursday, November 22, 2001 at 09:44 PM (CST)

We pray that everyone had a happy Thanksgiving! Today could be briefly summed up as confusing. We are wrestling with so many questions. Is that a seizure? If it is a seizure, is it a bad sign or just a temporary side effect? Should anyone buy plane tickets? What day should we/they travel? Who should get the night shift tonight? Are a passport and a sad story of wallet theft enough to avoid a ticket for driving without a license? What can we say in the update tonight? Where can we find a restaurant open and palatable at 8:00 on Thanksgiving night? Does anyone know how to say “take-out cup” in Spanish? How many licks does it take to get to the center of a Tootsie Pop? And so on…

Lydia seems to be showing signs of withdrawal from pentathal. Her body is frequently moving beyond her control. Thankfully, these movements are not usually seizures. She is having a difficult time resting because of the movement. Pray for her rest.

From time to time a parent or grandparent has theorized that the movement was a seizure. Three times, these seizures were deemed worthy of treatment and Lydia received medication. She is no longer hooked up to an EEG. Therefore, the neurologist cannot look back and see whether or not she actually was seizing. We have to rely on the educated opinions of doctors, nurses, parents, and grandparents and of course, God’s guidance. Thankfully, most have agreed on whether or not she was seizing fairly consistently today. We truly feel blessed for the supportive nurses and doctors we have encountered. Shift change is a cautious time until we see how we mesh with the new crew.

Our prayer is that these seizures/movements are fleeting withdrawal symptoms and not a sign of unsuccessful surgery. We would appreciate your prayer for Lydia’s brain to calm down permanently. As is too often the case, we just have to wait and see what God’s plan is for Lydia. We are very hesitant to let ourselves believe that this journey is coming to an end. If we knew that the end were near, we would be rejoicing and the waiting would be easily endured. I guess that knowing the end were near wouldn’t require faith.

There are two little things that Allison is especially thankful for today. Firstly, Lydia starting getting breast milk again last night as scheduled with gradually increased volume. Secondly, Allison also got to hold Lydia the past two days for the first times in over a week. It was good to see the two of them together again.

One of the nurses was driving to Tennessee today. We told her we would love to put her up in Macon to break up the drive. Obviously, we were not able to do so but we assured her that she would be welcome next time. She said that she will come by and will be looking to find Lydia playing in the yard. What an awesome thought! This Thanksgiving has been filled with wildly mixed emotions but imagine what a contrast next year could be! I try to picture a terrible two whose worst behavior is seen as a blessing.

It is impossible to know what will come of this and what lessons are being taught even as we speak. With thousands having been told of Lydia’s story, her impact may well be reaching farther than we can begin to know. We look forward to the day we can use the wisdom we are given today to help another family in a time of trial.

Jason (and Allison)

Wednesday, November 21, 2001 at 10:52 PM (CST)

It has been another day of progress, but painfully slow, and some of it just painful. This is the rough stage that Lydia goes through after being in a barbiturate coma. The movements that I was thrilled to see yesterday have changed into almost continuous writhing and twitching. Lydia just can’t control her body. It is preventing her from settling down and resting soundly. She hasn’t actually opened her eyes yet, but she is definitely responding. It is tough to see her so restless, but at least I know that this can be a milestone on the road to recovery.

That said it has been a great day. Lydia’s EEG was showing all over epileptic spikes, but no seizures. Again, this is her pattern coming off of these drugs, even though it isn’t what the neurologist calls normal. I am encouraged because during previous episodes, she was seizing long before this step. She is also only on ONE anticonvulsant drug, Depakote, in comparison to her usual four or five!

The painfully slow part I mentioned is her feeds. It took all day to get the tube in the acceptable position. This evening, they finally started her on 10cc (2 tsp) of Pedialyte an hour. At some point tonight they plan to change over to breast milk. I am sure part of her restlessness is hunger, but at least we are going in the right direction. They are being very cautious! It amazes me how each of the four PICU’s Lydia has been in has a different approach to feeds. At least she should be getting some real stuff by Thanksgiving, even if it is bypassing her stomach and going straight to her intestines. :o)

Lydia looks great! The extra blood last night did her well. Her lips are nice and red and her cheeks pink. Her hydration is improving, so she is filling back out a bit. They took her off EEG monitoring today, so we can see her hair again. (I don’t think I mentioned that the surgeon just shaved about a finger’s width of hair along the incision.) The repeat culture is still negative and Lydia’s temperature has been much better today.

God’s blessings have been abundant even though they aren’t always what we’ve asked for. One of today’s has been His persistence in teaching us patience! :o) Count your many blessings. Name them one by one, thanking God this Thanksgiving Day.

Our Thankfulness Continues,
Allison

Tuesday, November 20, 2001 at 09:25 PM (CST)

Thank you God for a good day for Lydia! She was extubated this afternoon! I hadn’t even thought to pray for this to happen so soon. With a little extra oxygen, she is breathing well and even grumbling at us. All of her limbs are wiggling around in the bed. My Dad’s birthday is tomorrow. He’s requested that Lydia open her eyes for his present. We all hope he gets his wish.

Lydia has a little fever. It could just be an effect from coming off of the medications, or it could be a sign of infection. Yesterday Lydia was cultured from head to toe. Her breathing tube specimen came back positive for bacteria (pseudomonas). The repeat culture is negative so far. We are praying that the culture was merely contaminated. This particular bacteria is a nasty one usually picked up from hospitals (go figure!). She will continue to receive prophylactic antibiotics for at least a couple more days.

The positive side of this picture is that Lydia actually has a fever without seizures for the first time ever! Do we dare let ourselves dream…?

Tylenol is about it for Lydia’s pain management now, because the morphine could mask neurological red flags. Please join us in praying for a quick recovery with minimal discomfort. Tomorrow she may get her first mamma’s milk slowly through a feeding tube. This is a step in the right direction!

Now looking back, we are grateful that we had a false start on Lydia’s first surgery. As we previously mentioned, this allowed enough time for us to give blood directed for her. Tonight she will receive her third allotment (one from me and two from Jason). God sure knew what He was doing. :o)

Beth is staying with Lydia again tonight. They should have a good time. It is soothing to the soul to see Lydia move and respond. I will be even more eager than usual to get back to her in the morning!

Continued Blessings,
Allison

Tuesday, November 20, 2001 at 09:25 PM (CST)

Thank you God for a good day for Lydia! She was extubated this afternoon! I hadn’t even though to pray for this to happen so soon. With a little extra oxygen, she is breathing well and even grumbling at us. All of her limbs are wiggling around in the bed. My Dad’s birthday is tomorrow. He’s requested that Lydia open her eyes for his present. We all hope he gets his wish.

Lydia has a little fever. It could just be an effect from coming off of the medications, or it could be a sign of infection. Yesterday Lydia was cultured from head to toe. Her breathing tube specimen came back positive for bacteria (pseudomonas). The repeat culture is negative so far. We are praying that the culture was merely contaminated. This particular bacteria is a nasty one usually picked up from hospitals (go figure!). She will continue to receive prophylactic antibiotics for at least a couple more days.

The positive side of this picture is that Lydia actually has a fever without seizures for the first time ever! Do we dare let ourselves dream…?

Tylenol is about it for Lydia’s pain management now, because the morphine could mask neurological red flags. Please join us in praying for a quick recovery with minimal discomfort. Tomorrow she may get her first mamma’s milk slowly through a feeding tube. This is a step in the right direction!

Now looking back, we are grateful that we had a false start on Lydia’s first surgery. As we previously mentioned, this allowed enough time for us to give blood directed for her. Tonight she will receive her third allotment (one from me and two from Jason). God sure knew what He was doing. :o)

Beth is staying with Lydia again tonight. They should have a good time. It is soothing to the soul to see Lydia move and respond. I will be even more eager than usual to get back to her in the morning!

Continued Blessings,
Allison

Monday, November 19, 2001 at 07:56 PM (CST)

Lydia is starting to cough a little! Somehow that milestone was left out of her baby book!?!? :o) The thiopental (“sedative”) has been turned off as of earlier this evening. The levophed (blood pressure medication) is not far behind. The EEG hasn’t shown any seizures.

Before the night is through, the IV nurse is supposed to try to put in a PICC line to replace Lydia’s central line. The leg where it is located, along with her arterial line is quite swollen. Hopefully we can keep the arterial line. The central line would have to go anyway before we could go to the floor (wishful thinking). The PICC line can go with her. I pray that the nurse will be successful.

So, we continue to pray for no seizures and for Lydia to wake up. In the mean time, Beth has been busy between night shifts wrapping up the loose ends due to her wallet being stolen. How frustrating would that be even under normal circumstances? I hope Lydia will give her a good night to cheer her up.

Jason’s not here to edit tonight, but maybe tomorrow! Thanks for the continued interest and prayers.

Continued Blessings,
Allison

Sunday, November 18, 2001 at 06:43 PM (CST)

It’s Allison again (and her editor, Jason). Lydia has had another slow day in night and day in the PICU (actually, it has been the same 86,400 seconds as everyone’s day). My parents took their turn at the night shift so Beth could rest up in preparation to take over again tonight (and as many other nights as we can con her into staying up). This morning Lydia was still very deeply sedated. They started the decrease on her Thiopental and will continue every six hours until tomorrow night, assuming that the plan doesn’t change before then (imagine that, a plan changing).

Last night, before the first decrease, Lydia had the first of a couple of short periods where her heart rate and blood pressure shot up (I am arguing for the phrase “shot” being replaced with “went” to no avail). Tomorrow, the neurologist should (note the lack of word “will”) go back to those times and look to see if the EEG showed any signs of seizures. Who knows? Even after the medicine is completely stopped, it could still take a while before Lydia wakes up. Will she seize or not? It’s like waiting for Christmas, well, kind of. If she does seize, they will likely repeat the “coma” for a longer period of time. (You should be proud that Allison actually spelled coma with one “m” this time!)

We have never been a family that leaves Lydia’s bedside unattended. But, because of the set up of this unit, all “visitors” are required to leave during rounds and shift changes. We have learned that the hour-long evening shift change is a perfect time for us to all get out for a nice meal. The medical staff has been a good source of restaurant recommendations, far superior to the results of our wanderings around town!

I feel like I’m becoming a Southern Floridian, well not really, but I did have plantains and rice with my last two dinners. :o) It’s rather obvious that I’m really from Southern Georgia though. When I was told the name of our next nurse, they smiled when I assumed they were saying Jock rather than Jacque. Last night I asked if fried green plantains were like fried green tomatoes. I’m just not fooling anyone! I also learned a new Spanish word. Did you know that linda means beautiful? I can never tell who is mispronouncing Lydia’s name and who is just struck by her beauty! :o) (Thanks in large part to her father’s genetic contribution.)

Amazingly almost all of the swelling has gone down and if anything she looks skinnier, not puffy (still not skinny, just skinnier). They are starting some IV nutrition tonight. She hasn’t had anything since Monday other than standard IV solution plus a few mineral supplements. They will not give her any breast milk until she is much less sedated, because her digestive system has been slowed down along with everything else.

Of course I wish that she could have skipped this stage in her recovery, but at least she is not suffering through what I imagine would have been a nasty headache (or splitting headache. HA HA). She is quite cozy and comfortable, even getting warm air blown under her covers to keep her toasty. Jason says he, too, would be reluctant to wake up if he had something breathing for him and fluffing his covers. :o) (My birthday is coming soon!)

Maybe I can get Jason back on to bring us some humor tomorrow. (Or maybe he will just add it in the middle while editing.) We are grateful that his school is off all next week for Thanksgiving (Jason being the most excited). We keep talking about when to schedule his return flight, but it is just impossible to know now. Maybe we will have more to report tomorrow. (Or maybe I will be bored enough to agree to edit the journal entry in order to make it more exciting).

Continued blessings,
(Jason and) Allison

(For all that might be concerned, the hunt for Hot Wheels has continued despite setbacks. Also, the long awaited haircut occurred today. Como se dice “leave something would ya!”)

Saturday, November 17, 2001 at 10:13 PM (CST)

This update is being provided by Grandmommy (Beth) Tripp.

John and I arrived at Miami Children’s Hospital at around 1 AM Thursday. Our journey was much like Jason’s-we were apparently flagged because of flying with one-way tickets. We visited the “Georgia Room” which is a euphemism for Delta’s holding room where you wait to see if your “special x-ray” and screening of luggage is clear. Then after using an explosive detector on my carry-on bag, a hand search of luggage and “wanding” at the gate, we were off!

In spite of how much Lydia has grown and changed since we last saw her, not wearing glasses and having her head wrapped in a rather impressive turban, I would have recognized her in any crowd! She is so beautiful!

John and I stayed the night that first night and I have stayed the nights since then. (John has been relieving on the day shift!) While I love the chance to be with her and relieve her parents for a little rest, it still breaks my heart to see her suffering! A colleague at work reminded me that the difficulty of being a grandparent is that you hurt for your children as well as your grandchildren. Example: Jason and I were watching her seize and having to become more insistent that the resident needed to call whomever to give Pentabarb to get it stopped. Jason leaned over and held Lydia’s hand and said to her, “We keep telling you that we are doing this to make things better for you. Pretty soon you are not going to believe us, are you.”

Today, Lydia is heavily sedated and thus not seizing. It is still taking Levophed to keep her blood pressure up because of the effect of the Thiopental. Even though the dressing was removed yesterday it took until about 6 PM tonight to get EEG leads attached and monitoring. The physicians are not willing to lighten her sedation any until they see what the EEG shows, so we have been at a standstill. This old nurse is concerned because Lydia is so deeply sedated, that she has no cough, gag or corneal reflex. We are being very vigilant that she is suctioned regularly, turned and protective lubricant placed in her eyes.

Allison and Jason are amazing! They have a strength and wisdom beyond their years.

On a lighter note, when we made it to the car rental desk at the airport in Miami, we had all intentions of renting something practical like a Taurus. As the clerk was scrolling through what was available, he said, “Would you like a convertible?” John and I looked at each other and agreed that the kids would have fun with that! While I think they have enjoyed it, I must admit that the drive back to the hotel with the top down after a long night at the hospital is quite fun! Isn’t it amazing how God provides us with little surprises to help us along the way!

Thank you all for your support for Lydia and her precious parents. You cannot begin to imagine how much it means to all of us. “And He will lift you up on eagles wings…and hold you in the palm of His hand.”

Beth Tripp

Friday, November 16, 2001 at 06:15 PM (CST)

Still no seizures here! Lydia had a silent night running into a peaceful day for all of us. (Silent Night will take on a new meaning for us this Christmas.) :- ) Since everything was under control, I was allowed a refreshing leisurely stroll to the hospital this morning. The weather is gorgeous—perfect breeze and blue sky. It was therapeutic for my weary body. We are still exhausted even after sleeping in a real bed the last couple of nights. At least for the time being the stress level is much less!

The clown team came through the PICU this afternoon serenading us with a flute. (Did you know that Jason played flute in the high school band? Mr. 6’5” really stuck out in that section!) One of the songs chosen for Lydia was “Somewhere Over the Rainbow.” I couldn’t get my tired mind to recall many of the words, but took pause on “rainbow” instead. It reminded me of God’s many promises to his children.

The rainbow represents God’s concrete promise never to flood the entire earth again. Our promises for Lydia are not quite as defined, but they still provide comfort. I smiled as I remembered how God gave me a rainbow one afternoon when I was longing for the chance to be a mom, but knew that it wasn’t time yet. Again, I didn’t take it as some prophetic sign with specific meaning, but as a peaceful reminder that God knew my heart and His timing is always perfect. I pray that He will continue to mold my heart and my desires to be in alignment with His. I can now see how important it was for us to wait until we could afford for me to stay at home!

The medical staff has decided to keep her sedated until at least Sunday. I am thrilled. Never before has Lydia been allowed to seize for as long as she has in the past few days. Even with shorter episodes of status, she has required much more than a day of chemically controlled rest to quite her brain. This situation is of course different, but we can still pull from her past to formulate the best plan to give her the greatest odds for her future.

Our hope that the seizures are now behind us is a little stronger but certainly cautious. Lydia may still seize as she is weaned from the pentathal. If she does, it could be either impetus for yet another surgery or inconsequential and fleeting. She is currently responding well to the sedation. In the past, her dose would have to be increased almost hourly to keep her from breaking through and seizing. Over the past day and a half, it has only been adjusted a couple of times due to signs that she was waking up some, not because of twitches or jerks!

Thank you everyone for the amazing support. We enjoy reading the guest book entries and seeing all of the hits. Yesterday we got a couple of adorable pictures that our little next door neighbor drew for Lydia. We also received a basket of yummy goodies from Lydia’s pediatrician back in Georgia. What more could I ask for? Oh, I do have one need that a Floridian could provide for. My breast milk stash is growing and would keep better in a deep freeze. My parents are going to go home for the night and will be taking it with them. If you can help please leave a message on their answering machine (954-572-5001).

Thanks Again,
Allison

Thursday, November 15, 2001 at 10:16 PM (CST)

This afternoon Dr. Duchowny explained that what one of the things that concerns him the most about last night’s status seizure activity is how focal it was. Yesterday Lydia was having mostly jerking of random extremities with only occasional periods of true rhythmic seizures. In other words, most of it was firings of her irritable brain in general rather than classic seizures of a specific origin.

In comparison, throughout the night, it was primarily Lydia’s left hand that showed the seizure activity. The seemingly obvious conclusion is that her brain was not just irritable from the surgery, seizures, etc. but that a focus remains in her right motor strip. If this is the case, it will likely need to be removed as well.

The medical team is not quite ready to make that decision though. Lydia is stable and resting, brain included. Therefore the current plan is to give her brain one more chance to prove itself after a much needed period of down time. Then when the time comes to decrease the drug, the way her brain responds should provide the answer.

They have her on continuous infusions of two drugs. The first is Pentabarb, actually Thiopental, to suppress her brain activity and keep her from seizing. It also is suppressing her blood pressure, so to maintain it, she is receiving the second, Levophed. Lydia is on the vent as expected, but as usual, she is breathing over it like a champ.

Since the previous portion of this journal entry was written, I have had a chance to get the surgeon’s perspective about last night’s seizures. Again, it is opposite of that of the neurologist.

Dr. Ragheb would have been more concerned if Lydia had generalized. He explained that the right motor strip, which controls the hand that was affected by the seizures, is the area of the brain that he would most expect to be irritable. This is where the cutting took place. This makes since to me just as the first opinion did!?!?!

Such diverging opinions given by two excellent specialists displays how little is known for sure about the brain’s workings. One blessing is that both physicians agree with what needs to be done next, see what Lydia does as she wakes up and act on her cues. Tomorrow they may remove the bandages, place external electrodes on her head and monitor the brain activity as they decrease her medication. If she does seize as she wakes up, they will suppress her again for longer.

We are praying for a quiet night. Beth is staying at the hospital again for us. We finally asked and got a good restaurant recommendation for supper. So, potentially it could be an evening of good food and rest! Jason and I will try to sleep better knowing that our little girl has been more than twelve hours without a seizure.

Thank you God for letting Lydia rest today! It looks like all agreed that two brain surgeries in two days is enough to merit some recovery time. :- )

Continued Blessings,
Allison

Thursday, November 15, 2001 at 10:30 AM (CST)

The night last night was all too familiar. Lydia seized consistently from the time we first saw her after surgery until 9:30 this morning. She was on a continuous drip of Versed to prevent this, but the dose was far too insufficient (less 1/3 the dose she required in Atlanta in a very different yet similiar situation). Extra doses of drugs (Ativan, Versed, and a couple others) would occasionally give her a few minutes rest before returning to seizing.

It has been fruitless for Allison and me to convince the doctors just how much medicine it can take to stop Lydia’s seizures, and that she will likely sail through it if the would just give it to her. They are understandably hesitant to push medicine at a level well beyond what the average child can tolerate. It was said that you could kill a cow with the large amount of drugs it took to touch her. Lydia eats up the anti-seizure and sedation medications like her father eats snacks. That is, she can take all that is thrown at her and then ask for more. It is very frustrating watching her seize as the medical staff very slowly become more and more aggressive with the medicine. My first inclination is to be angry at the rate of the treatment but the doctors and nurses in the ICU are in a tough situation. They are playing the part of the middle man between upset and emotional parents and orders from Lydia’s primary doctors, who left orders to avoid the only medicine that will work on her at this stage in the game, Pentabarb.

Around 7:00 this morning, mom (Beth) and I were watching Lydia’s heart race pass normal levels and her oxygen saturation drop. Her blood pressure was also steadily increasing to well above normal. When the math teacher saw the look of concern on the veteran nurse’s face, the tension mounted. I pressed the doctor to call for permission to do whatever it took to end this seizure saga. The neurologist passed through quickly and gave the ICU doctor more specific instructions which included further discouragement about the use Pentabarbitol. It was to be used ONLY as a last resort because of some potential difficulty coming off of it later, including the possibility of more seizures because of withdraw.

When the Intensivist finally decided the time had come to act, the last resort medicine was finally administered and will be continuously dripping until the plan changes. Lydia almost immediately stopped seizing and her vital signs returned to where they ought to be. She has since been very calm and still and seems to be resting peacefully. As far as we know, the current plan is to keep her down for a while and then try to let up and pray that the seizures subside over a couple of weeks. If that doesn’t happen, surgery will have to be done to remove more tissue.

Near the end of her long spell she needed another IV for various reasons. A young male IV nurse came in and got it on the first try. This is wonderful news because Lydia has often spent literally hours waiting for IV access. They are about to try to put in a central line as well. The central line is more long term than a normal IV, and makes is easier to push drugs quickly when necessary because of its larger diameter.

Allison and I were able to leave last night to get some much needed sleep. My parents stayed with Lydia even after a day of work and an unexpected plane trip from Atlanta. We now have more warm bodies to rotate by the bedside so all involved should be more rested and ready to go.

Jason

Wednesday, November 14, 2001 at 10:32 PM (CST)

The surgery is over!

It took almost as long to get a replacement arterial line as is did for the surgery itself. The brain mapping was unsuccessful. Because Lydia had been seizing for so long, her brain was too worn out to respond to the stimulus. The surgeon wasn’t inclined to take the motor strip anyway. He might have taken a little more of the brain (toward the front) if the mapping had been successful.

Dr. Rageb decided to be conservative. They started at the back of the right side of her brain and took out about one third of the way forward. The occipital lobe actually even felt abnormal, rubbery and harder than usual. The removed portion will be passed on to the pathologist who will look for abnormalities, etc. It will probably take a couple of weeks before any results are available.

Lydia only lost about 2-3 oz. of blood, compared to 6 oz. yesterday. She will again receive some of our blood tonight. With the incredible stress she has been under, post surgical seizures are actually expected. This will be seen as a response to the stress, not a foreshadowing of prognosis. They do not always say this, but as we all know by now, Lydia is a special case.

As I mentioned earlier, Lydia will be kept on the ventilator at least overnight. By keeping her airway protected, any hesitation to medicate her should be eliminated. This should not be a night like last night, begging for drugs to stop the seizures. We are getting to pray for again for NO MORE SEIZURES!

Allison

P.S. Jason and I just went in to see Lydia. She is already seizing. Between the drugs already in her system, and the fact that she is cold from surgery, her heart rate is slow. This presents a challenge in managing her seizures. The amount of drugs usually required to stop her would be too much on her circulation right now. She is being put on a warming blanket, which hopefully will resolve this conflict and allow us to get the seizures under control. Keep praying.

Even though I know the facts about the “irrelevance” of these seizures and even though I know God is still in control, seeing her seize so quickly after surgery is heartbreaking. I don’t know if tonight will be the night, but please pray that we will begin to catch up on some sleep, so we are more physically able to handle the emotional strain.

Wednesday, November 14, 2001 at 05:56 PM (CST)

The day after Lydia’s first brain surgery has been a long one.

I started this entry a few hours ago but I have to start over due to some pressing circumstances. I don’t have the heart for humor right now. I apologize to all my fans.

Lydia has been seizing fairly consistently ever since the surgery yesterday. The neurologists tell us that she did, in fact, stop and start at least a couple of times. This gave them needed information. They are convinced that she needs to have the back 1/3 of the right side of her brain removed (occipital lobe and part of the parietal and temporal lobes). Ideally, a few more days would be taken to record more examples of her seizures. However, she is not stopping long enough between seizures to let her body recover. They are worried about the effects of hours upon hours of frequent seizing. Emergency surgery is taking place this evening.

Our biggest need for prayer (besides the obvious prayer for Lydia’s health) is for wisdom for Allison and me as we make a tough decision. There is a possibility that one of the suspicious areas of her brain is located at or near her motor strip. I say “suspicious” because it is not definite whether that area is involved with starting seizures. Before they do the surgery, they will be “mapping” her brain. If the suspicious place is not in the part that controls motor function, the doctors will just remove it without question. The problem arises if it does include the motor strip. There are two competing trains of thought. First, would we rather Lydia retain complete motor function despite the possibility of future seizure problems, possibly requiring additional surgery in the future? Alternately, would we rather her have the seizures more definitely stopped with some loss of motor function?

If the right motor strip is removed, she will be temporarily paralyzed on her left side. She would most likely regain almost all function with time and therapy. The doctor described the net difference as being kind of like having a helper hand on her left side instead of two equal hands. She might not have the complete control of her left side that most of us take for granted. We are presently mulling over the possibilities with the advice of our neurologists. Hopefully, we will not have to make the decision for one of two reasons. The first reason would be because it doesn’t involve her motor strip. Secondly, the neurosurgeon is not as convinced that we should even be given the decision. He hasn’t conceded to touch the motor strip with only the current information. They will duke it out in the O.R., but we all know who holds the knife. We need to be prepared to make the decision just in case.

Allison and I left Lydia in the care of an anesthesiologist about 30 minutes ago. They estimate 4-6 hours for mapping plus surgery. She should be through around the same time that her Tripp grandparents arrive in Miami. Recovery may be longer because of the amount of seizure activity over the last 24 hours. The thought is to tend towards caution in bringing her out of anesthetic. Her brain needs a while to settle down, which means she will likely be on the vent for a few days.

It may be late and short, but we will post an entry to let you know when she comes out of surgery.

Jason and Allison

Tuesday, November 13, 2001 at 10:43 PM (CST)

Jason was right in remaining skeptical about promises of surgery time until it actually happened. After hurrying to the hospital this morning, almost hourly, we were told that the surgery should start in about an hour. She finally was taken back a little before 4:00. One strange looking blessing, was that Lydia had a prolonged seizure in the early stages of waiting for an O.R. to free up. This allowed us to medicate her, which this time was enough to push her on to sleep, rather than continue fussing about her empty tummy.

Almost an hour after taking her back, they called to let us know that the surgery was finally beginning. It had taken a while to get an I.V.!?!? Lydia remained stable throughout the surgery. A large portion of her right hemisphere now has electrodes sewn onto it (complete occipital lobe, portions of parietal and temporal, particularly the motor strip between the later two). I will explain more later, but there was some visual abnormality on the portion of Lydia’s brain that was most suspect before surgery! This is confirming.

We are back to praying for seizures again. Specifically, several short seizures. All they need is the beginnings. In theory, if the seizures are too long, and require too much medication to stop, then it could prolong the length of time before the next important start of another seizure. More information is better, but we are eager to keep this ball rolling. Sitting around waiting for seizures wasn’t fun a couple of weeks ago, but this time there is an added element. Since Lydia will have wires coming out of her skull, there is always a chance of bacteria getting in.

We may not have to wait long to gather enough data. Before leaving recovery at 8:00 this evening, Lydia had already started seizing! The problem is that she was still seizing over an hour later. Jason and I have had to fight in the PICU to get a cohesive care plan which includes preventing status (prolonged seizures). Most kids have short seizures, so in this stage of the game, they are not treated. We finally received acknowledgement that Lydia is a special case.

Today went well. Lydia did receive some of our donated blood post surgery. She is getting morphine around the clock, but when she’s awake, you can tell she is uncomfortable. We haven’t tried any food yet, as she is still throwing up some. Please pray for wisdom and cooperation to keep Lydia safe from these long seizures that she is flirting with.

We are exhausted but grateful. Thank you for all of the support. Our prayers were answered today!

Continued Blessings,
Allison

Tuesday, November 13, 2001 at 06:21 AM (CST)

Today is a big day! So far the O.R. is already quite a bit ahead of schedule. We will be headed over as soon as we can get everything together. Her 3:30 surgery is going to be quite early. The goal is to sew grids of electrodes onto the very surface of Lydia’s brain, in hopes that the origin of her seizures will be pinpointed. Last night a dear friend was reminding me that this will be one of those days that our family will forever date things back to. Our milestones have been a little different than most since Lydia has been born.

*Lydia’s initial illness/hospitalization/seizure (one week old-9/00)
*First induced coma b/c seizures (2/01)
*Finding Lydia’s current pediatric neurologist, Dr. Pearlman (3/01)
*6 weeks between seizures for the first time (2/01-4/01)
*Lydia started wearing glasses (3/01)
*Surgery to implant the Vagus Nerve Stimulator (4/01)
*Rolled over for the first time while finally getting to wean Phenobarb! (4/01)
*Second induced coma, this time in Savannah (7/01)
*7 ½ weeks between seizures for the first time (7/01-9/01)
*Lydia’ s first birthday (9/17/01)
*Phase I work-up in Miami (10/01)
*First brain surgery, placement of grid electrodes

I ‘ve lost track of how many times Lydia has actually started rolling over for the “first time” again after set backs. Today will be hospitalization number 11! We pray that God will see fit to allow the next couple of notes on the timeline to be:
*Lydia’s last seizues (11/01)
*Second and final brain surgery to remove seizure origin (11/01)

Neither Jason, nor I slept very well last night. Today we will have to put Lydia in the hands of Dr. Ragheb, the neurosurgeon. We can only do this because we have already put them both into the hands of God. Ironically enough, the very real inherent risks involved with this surgery are miniscule in comparison to those of Lydia’s prolonged seizures. This is just the first time our “choice” will be the reason she is subjected. Thank you God that the decision was so clear. Last night Lydia had another frighteningly subtle seizure that makes today even a little easier to embrace.

We will update you as soon as possible. The surgery should take 3-5 hours.

Thank you for your continued prayers,
Allison

Tuesday, November 13, 2001 at 06:21 AM (CST)

TEMPORARY UPDATE: Allison or Jason will provide an update later today.
Lydia displayed her smile last night for some great pictures that will hopefully will be available around 26 Nov.
Here is the schedule for today:
1:30 PM - Lydia will be admitted to Miami Children's Hospital
3:30 PM - Surgery will be performed to temporarily implant the electrodes on her brain. I believe the surgery will take three to five hours.
Thank you for praying for her today.
God bless you,
"Papa" Ron

Sunday, November 11, 2001 at 10:15 PM (CST)

After days of waiting for bacteria to grow in some overpriced piece of tupperware, nothing happened. That is, Lydia’s culture was negative. We left the antibiotics and the glorified spice rack of a hospital room behind.

This evening Allison and I went out for a date (at least what we now know as one). With only an undetermined restaurant in mind, we drove in straight lines so as not to get lost. We seemed to have an uncanny knack for finding streets that have miles of uninterrupted ghettos. I cannot remember how many shady spots we avoided even after the sun had already set. If we had wanted questionable local cuisine or a 24-hour adult video shop, we would have been in hog heaven. We covered a large portion of our little corner of Miami including the Orange Bowl and the Miami International Airport. Despite all of the fancy Miami dealerships I have seen advertised in car magazines, the most exciting car we saw tonight was a three-cylinder Geo. The only unique part was that it had mere one brake light and taillight. We ended up settling for southern fried chicken served by someone from somewhere south of the border.

Tomorrow is expected to be a relaxing day with our invigorated daughter. We love the newfound smiles and laughs but Friday night was a reminder of the reason we are subjecting her to the upcoming events. We do not look forward to sending Lydia off to the operating room with a neurosurgeon, but we do eagerly anticipate the possibility of looking back on the memories of seizures.

As it is almost Veteran’s Day, we send a special thank you to all of the veterans reading this. We are grateful for the freedoms we too often take for granted. Mere months ago, Lydia’s EEG tech was an internal specialist in Cuba making $50 a month. He knows how to appreciate the U.S.A..

Jason

Sunday, November 11, 2001 at 05:20 PM (CST)

TEMPORARY UPDATE:
Great news! The Tripp family has been temporarily released from the hospital, giving them almost two days before they have to return on Tuesday.
This temporary update is being provided by “Papa” Ron as Jason and Allison have gone out for a little while and Lydia is napping.
Lydia has been such a delight. We just videotaped her feeding herself [a saltine cracker] and, generally, putting on a show filled with smiles and even a few laughs.
There was a time, about a year ago, when my prayer to God was something like this: “Lord, I know You knew this little girl before she was born. I am asking You to let her live long enough to allow me to get to know her better.”
Until the last two weeks, I thought this prayer had already been answered. But, with the drugs mostly removed to induce seizures, Lydia has displayed a whole new side of her personality. Before she was awake; now she is alert. And her smiles radiate. Her whole face lights up.
I learned yesterday that I have a cataract in my left eye that needs some attention. I thought my glasses were dirty. Jackie accused me of identifying with Lydia—her sight may have been affected by the seizures..
We also learned yesterday that Jeff is planning to fly to Miami during the Thanksgiving holidays. Our family will be together! God has been so good to us!
This has been an amazing few weeks. We have been overwhelmed by your response, by your prayers and your notes. We thank God for you.
Jason will give you a full report on his return.
God bless you,
“Papa” Ron

Sunday, November 11, 2001 at 05:11 PM (CST)

TEMPORARY UPDATE:
Great news! The Tripp family has been temporarily released from the hospital, giving them almost two days before they have to return on Tuesday.
This temporary update is being provided by “Papa” Ron as Jason and Allison have gone out for a little while and Lydia is napping.
Lydia has been such a delight. We just videotaped her feeding herself [a saltine cracker] and, generally, putting on a show filled with smiles and even a few laughs.
There was a time, about a year ago, when my prayer to God was something like this: “Lord, I know You knew this little girl before she was born. I am asking You to let her live long enough to allow me to get to know her better.”
Until the last two weeks, I thought this prayer had already been answered. But, with the drugs mostly removed to induce seizures, Lydia has displayed a whole new side of her personality. Before she was awake; now she is alert. And her smiles radiate. Her whole face lights up.
I learned yesterday that I have a cataract in my left eye that needs some attention. I thought my glasses were dirty. Jackie accused me of identifying with Lydia—her sight may have been affected by the seizures..
We also learned yesterday that Jeff is planning to fly to Miami during the Thanksgiving holidays. Our family will be together! God has been so good to us!
This has been an amazing few weeks. We have been overwhelmed by your response, by your prayers and your notes. We thank God for you.
Jason will give you a full report on his return.
God bless you,
“Papa” Ron

Saturday, November 10, 2001 at 08:34 PM (CST)

Lydia slept great last night, thanks to me being her "No Woman". You know kind of like a "Yes Man." “No thank you we don’t really have to know: Lydia’s temp. at 10:30 PM just after she was finally asleep, or her blood pressure at 4:00 AM, or her blood level at 6:45 of the drug that had already been discontinued.” :- 0 We’re just here for the I.V. antibiotic anyway.

Lydia hasn’t had any more seizures since the one that sent us to the E.R.. Today has been rather uneventful with the highlights being this evening. My parents drove down and stayed with Lydia so Jason and I could go out for supper. While we were out Lydia ate too! (Many may not be aware of the fact that two different therapists have been working with her each twice a week to get her to eat. She still ONLY takes the breast.) She eagerly ate 1½ saltines, a teaspoon of each mashed potatoes and vanilla pudding, a couple of baby handfuls of rice crispies, and about 4 oz. of expressed milk out of our newest attempt at a bottle. This thing is really shaped like mama! :- )

Still no growth in the urine culture to allow identification of the bacteria. Hopefully we will be able to head back to the apartment tomorrow even without it. Lydia has just looked so good and hasn’t run even a low grade fever. The neurologist that is on call for the weekend agrees that it would benefit all of us to get away from here for a few days of rest before Tuesday.

Mom and dad are planning on coming for part of the day tomorrow too. I wonder what Lydia will be eating then? We really must start thinking about incorporating more nutritious new foods! :- ) She is supposed to be going to sleep now, but she is laying in the bed beside me watching me type, just giggling and grinning. She is just loving life and any tidbit of attention directed her way. Those smiles just light up the room!

We are just sailing along, but not really focusing much on what next week will hold. Pray that God’s peace will continue to remain stong in us as Tuesday approaches. It looks like Lydia is going to smile herself to sleep. I am thrilled that she has been so happy today so Jason could see the wonderful transformation. We are blessed with a precious daughter.

Jason just left to walk back to the apartment, no doubt to work off the additional ice cream cups from today. He must rest up so he can drum up another humorous journal entry for us. I guess I should go now and round up Lydia’s evening meds that should have been here half an hour ago. Don’t get the wrong idea, I am quite pleased with the hospital, but it’s just still a hopspital. I am eager for us to join Jason at the apartment!

Continued blessings,
Allison

Friday, November 09, 2001 at 09:07 PM (CST)

Thoughts from 1/3 of a hospital room…

What actual privacy does a couple of yards of “decorator” fabric really provide except to disguise the fact that everyone is listening to everyone else’s conversations? I wouldn’t be watching diaper changes anyway!

R- Rattling
O- Off
U- Useless
N- Nothings
D- Downward (at)
S- Students

What a blessing so many people around here have to grow up knowing two languages (Spanish and English). I suppose that some would argue that I know multiple languages. When I mention exponents during first period, students look at me like I am speaking a foreign language. Similarly, when I use the phrases I learn from teenagers, my family members have nearly the same look on their faces.

I wonder if a person with extra, shall we say, padding in the posterior, can find more comfortable positions in a given chair. It seems that I have exhausted the creativity of mine. I say this despite the risk of my picture appearing in your mind the next time your “bottom” hurts.

Lydia drums up attention by starting with a whimper or two and working her way up to full scale fuss. Would crying and making a pitiful face increase my chances of getting my way? I somehow doubt that wives or teenagers are the most sympathetic audiences on which to test my hypothesis.

If doctors started working the night shift, would our children begin being sick during more convenient hours? What sort of automatic weapon would we have to carry to bring about this change?

R- Really
E- Eager to
S- Suggest an
I- Ingenious
D- Diagnosis
E- Even if it’s
N- Negated
T- Tomorrow

I wonder how many times our emergency room doctor, Dr. Green, has heard ER related comments…… Is it intentional that the doctors in the emergency room have easier names to pronounce? I suppose patients who are critical shouldn’t be expected to rehearse a name with 17 syllables and 2 vowels……. I think that if I had a name that was difficult to pronounce I would adopt a one-letter variation. (Look what it did for Dr. J., Malcolm X, and Mr. T.)

Do care-givers really benefit from discharge instructions? Our roommates have both left this evening and I think they might have heard a word or two from over their shoulder as they left. It is unfortunate that the nurse interrupted dinner planning for the first.

Is there anyone besides me who appreciates our kind friend,Theresa, who let us use this computer for our trip to Miami? I must add that I have broken my own record and have won my last 32 games of Free Cell…. Make that 33 games!
--------------------------------------------------------------------------------------------------------
Obviously, we have had a slow day in the hospital. This is not entirely a bad thing. Lydia is sitting up by herself so much better than when I saw her last. She still needs watchful hands waiting for her inevitable distraction from the task at hand. (She wanted me to tell "Miss" Cora how well she was doing.) We finally got some antibiotics on board and the smiles seem to be more frequent. If her bacteria can be fought with oral medicines, we will return to the apartment tomorrow. Breaking (if not surprising) news, she might need to be here a little longer. Nevertheless, we are enjoying the time together.
We appreciate Sommer and the “Acclaimed” Dr. Pearlman for their help with questions about medicines yesterday. (Sommer, make sure he sees his title.)
How many of you remember ice cream in little cups with glorified tongue depressors as spoons? I do. I have had two “bowls” today! What will I do tomorrow to top that?
I must save some energy for amusing myself tomorrow. I think I will walk back to the apartment to burn off a couple of the 840,000 little cups of Coke I drank today. Have a great weekend! May God give you the contentment and creativity to amuse yourself with what you already have.

Jason

Friday, November 09, 2001 at 09:42 AM (CST)

Last evening, Lydia and Allison stayed at the hospital while Ron and I stayed at the apartment. They were interrupted a couple of times for various reasons. Lydia is in a room with two other children, one of which was admitted during the early hours of the morning.
A specimen was taken last night to test for a urinary tract infection. She does, indeed, have one. This is another factor that may have contributed to her seizures last night.
Lydia is trying to sleep this morning but everyone who enters the room seems to need to do something to her. She was polite for the first several interruptions but is now letting us know that she would really rather be sleeping. She is obviously related to her mother because if she was only my child she would have already made this clear.
Along the same lines, Allison has spent another day of her life answering the same questions for the ten-thousandth time. I feel like one of my students who recently complained about the student teacher beating around the bush with "fancy learning games." I suppose that when a doctor in some stange of training finally finds an answer, the constant stream of redundant questions will seem less annoying. She still has no family history of seizures. She still did not come from some strange planet where everyone knows how to avoid giving unreasonable answers to math questions.
This morning, I had to walk to the hospital because the logistics had left me transportationless. I was asked multiple times if I would be alright walking. After spending a grand total of 7 minutes door to door, I pointed out that I walk more than that distance to the office at school at least 100 times a day (give or take 98).
We still anticipate surgery at 3:30 Tuesday. Again, I won't believe it until she comes out with a scar.
I will leave you with that. I hope this update finds you well. God bless you. (That is, unless you are harassing a substitute teacher and then, may your final exam have 100 open-ended trigonometry and statistics questions with no formulas given.)

Jason

Thursday, November 08, 2001 at 10:55 PM (CST)

Well, when I posted the journal entry earlier this evening, Jason, Lydia and I were planning on heading back to Ft.Lauderdale to spend the weekend with my parents. We were actually in the van ready to head out and I noticed that Lydia was seizing.

She continued on through the maximum amount of diastat (rectal valium-20mg!) that we are allowed to give her, so we had to take a trip to the ER. By the time we got there she was slowing down, but still not through. She was even responding some and smiling towards the end.

It finally stopped after more than an hour. Because it too a while for the multiple attempts for the I.V., they had not even given her any more medication before the seizure had finished. They went ahead and gave her some Depacon as extra coverage to help ensure an uneventful rest of the evening. Her body seemed to handle it all quite well.

She did not require any Oxygen and her heart rate and temperature stayed normal. This is good! They went ahead and admitted her for at least the night. Her ears look slightly infected, so depending on the assessment in the morning, she may start an antibiotic. Because of her history, they are also going to check her urine to rule out a urinary tract infection as the trigger for the seizure activity.

Fatigue could just as easily have been the cause. For one reason or another, Lydia missed a nap each of the past couple of days. That has been seen to make her seize in the past. She is sleeping very soundly now. I will also sleep a bit better knowing that she is on a basic monitor. I don't expect anymore excitement tonight, but at least I know she can't get into to much trouble without an alarm going off.

In case you missed it, the most important information from the update from earlier this evening was that surgery has been scheduled for 3:30 on Tuesday. Even more so after tonight, we are glad that we weren't sent back to Georgia to wait for a later date. Lydia needs some sooner relief, as do we.

Because we thought Lydia was having surgery today, we moved into the hospital apartment yesterday. Yet another blessing! I am learning humility. Planning ahead never occurred to me as being a prideful act. :- ) I am about ready to stop trying though. It just never seems to end up like I expected. I sure am glad to know God's not suprised. He worked out the details in advance for us.

I better try to get some rest while everything is calm. I sure don't know what tomorrow will bring. :-)

Allison

Thursday, November 08, 2001 at 05:59 PM (CST)

It’s me, Allison, again. I know everyone enjoyed Jason’s humor yesterday. He’ll be back. I have several things I wanted to share with you, from the woman’s perspective.
:- )

One of my favorite college professors (Political Science, go figure) told us a story one morning to explain his fatigue. He said that he had been up comforting his daughter through the night. He had assured her that she shouldn’t be scared because God was with her. She responded “I know Daddy, but right now I need someone with skin on.”

I am grateful that God chose to bring my real live husband to me, skin on and all. It wasn’t until I saw him that I fully appreciated how much I needed a Jason fix! Aren’t we glad that God knows our needs better than we do? God as Our Great Physician ordered some together time for this family before the next round. He didn’t give us much choice in the matter. I’m glad we didn’t have the chance to be non-compliant. :- )

I have been eager to assure timely surgery for Lydia, but I glad that the first time was cancelled. The couple of weeks following surgery promise to be exhausting. I was just too emotionally and physically exhausted to start today. Jason also needed to relax some with his girls.

This afternoon the call finally came in to confirm a surgery. The O.R. is scheduled for 3:30 on Tuesday. Jason will stay here with us for the weekend. What a great plan! I am now thrilled with God’s timing. :- ) It is so easy to get hung up on details and try to help God work things out how we see fit! An analogy keeps running through my head. It’s like you keep praying for God to help you go west, and He tells you to go east. After kicking and pouting, you finally give in and head east. To your great surprise what do you find but a jet with your name on it, destination west?

This silly, simple analogy has applied to so many aspects of our journey. Hopefully, I am starting to learn the lesson. God is in control, and it’s in my best interest to trust Him even though some things are only going to make sense from His perspective. A dear friend pointed out that ALL we can do now is depend on God. And it’s this state of utter dependence where He wants us to reside.

Thanks for hanging in there with us.

Allison

Wednesday, November 07, 2001 at 09:37 PM (CST)

This evening, the update will most likely be different. Wednesday afternoon I decided that the one thing this web page was missing was a male perspective. The next logical step was to have my personal travel agent (thanks mom) produce an airline ticket. I did not realize how suspiciously the airline would look at a person traveling alone with a one-way ticket. I think that one of my students alerted the authorities to a strange person. When the second person requested to look in my bag and was wearing rubber gloves, I wondered if I should have told them where I was going. It turns out that only the bag needed searching.

The first paragraph was an example of a coping mechanism. I tend to use humor to help relieve stresses (e.g. teaching factoring to anybody at 7:30 in the morning). My students would be all too willing to recount stories of my rambling and telling stories when frustration sets in.

The frustration today was when we got to the neurosurgeon’s office and he had no intentions of operating on Lydia tomorrow. It would certainly prove to be difficult because he will be somewhere else operating on someone else. It turns out that someone in his office had spoken prematurely, as in before they asked him. I need not find out who it was that cost me a plane ticket and three days of missed work because I already know that their name is mud.

The second paragraph was an example of the glass being half-empty. I will now try to end as my wife would most likely summarize the day.

Lydia, Allison, and I had a joyful reunion. I am told that neither girl had smiles to give out this morning. Both are smiling this evening! I wish you all could experience the thrill of being surrounded by a smiling wife and daughter. While we are not proceeding under the previously announced schedule, we are looking forward to a long weekend as a family. Let’s just wait and see when God would have Lydia be operated on.

The extra time has allowed several things to happen that couldn’t have happed by tomorrow. Ron, Jackie, Allison, and I were each able to give blood earmarked for Lydia’s surgery. Also, Lydia will be switching medicine to eliminate the one that inhibits clotting. It was a blessing to be able to be here for Lydia’s appointment with the surgeon. If Allison had known the surgery would be later, she might not have asked me to come so soon.

I feel that a good day was had by all. Whatever I have missed or forgotten will have to wait until tomorrow. It has been a fun but long day.

Jason

P.S. Fret not my mathematically challenged friends, your assignments are in the mail already.

Wednesday, November 07, 2001 at 05:40 PM (CST)

Today’s Summary:
Met with the surgeon.
No surgery tomorrow.
Scheduling problems.
Maybe Tuesday at the earliest.
Jason’s here safely.
We’re off to supper and to give blood in case Lydia needs it during the surgeries.

More Later,
Allison

Tuesday, November 06, 2001 at 06:49 PM (CST)

Wow! The blessings continue. I got through to the right people today to schedule the surgery. The first report was that they were booked until January! This wasn’t good news. Dr. Duchowny had expressed grave concern about waiting. He is afraid of the possible outcome if Lydia were to go into another series of long seizures.

By the end of the day the picture changed. Another surgeon had reserved O.R. time for THURSDAY, but won’t be using it because he is out of town. Therefore, the neurosurgeon has agreed to perform Lydia’s first surgery then. Yikes! Yeah! I don’t know what to say. This means surgery the day after tomorrow! I was praying for God’s timing, but I wasn’t prepared for the answer.

I called Jason late this afternoon as soon as the call came in and he was going to try to return to school so he could prepare more lesson plans. His flight should leave Atlanta tomorrow morning and have him in Florida in time to join me as I meet with the surgeon around lunchtime. We will then spend the night in Miami so we will be close to the hospital for the surgery on Thursday.

I forgot to mention yesterday the neurologist said that surgery would give Lydia a 60-70% chance of being seizure free! Even if she wasn’t, she would have an 85-90% chance of greatly reduced seizures with minimal drugs. By the time we were on the second drug, during her first month of life, she only had a 10% chance of it working. That percentage has decreased exponentially with each new drug. The stimulator along with drugs had only a 33% chance of eliminating her seizures and 66% chance of drastic decrease. So, these are the best odds we have ever been given to give Lydia a life free of seizures, and therefore a chance to develop.

This is exciting and frightening. One of the fears is that the seizure origin on the right could be removed, only to have the seizures continue, but start on the left. We have recorded data of Lydia having seizures originating on the left one time. This was under extreme circumstances, coming out of a coma last July. This could easily have been a reaction to the massive amounts of drugs. We can only pray that it was merely an anomaly.

I don’t know how others go through this process without a sustaining relationship with Loving God. He is holding us near and has blessed us with such a wonderful support system. I look forward to having Jason close again tomorrow. Please pray for travel safety and punctuality for his flight. I was hoping to sleep soundly last night, but I could not get Raef’s family out of my mind. Continue to remember them in your prayers. As his Daddy said yesterday, we don’t know what lies ahead for us, but we know God will carry us through it.

Continued Prayers and Blessings,
Allison

Monday, November 05, 2001 at 10:31 PM (CST)

O.K., well here it goes. I promised to elaborate on what I learned from our appointment with Dr. Duchowny on Friday. As I said, they have regionalized the origin of Lydia’s seizures (right hemisphere), but not localized it. Based on the seizure that was recorded two weeks ago, it looked like the seizures were starting in her right parietal lobe. After more tests were done, the picture has started to change.

Next we did the SPECT scan with the dye being injected as soon as I saw the seizure start. This was not extremely helpful, because the seizure had already progressed to involve the whole right hemisphere by the time of the injection. This is because Lydia’s seizures are starting many minutes before I can tell by looking at her. She was actually sleeping during the first several minutes.

Next came the MRI, which again wasn’t very helpful, in this case because the scan was quite normal looking. The functional MRI did have some important information though. When they turned on the light show in Lydia’s special goggles, only the left part of her brain that controls vision responded. The left and right should have been equal. Most likely, this means that the right counterpart is abnormal, possibly because of damage due to the seizure activity.

This finding further inclines them to believe that more of her brain is involved than originally thought. It is expected that at least part of Lydia’s right occipital lobe, including the visual cortex is also epileptic and will have to be removed. This would leave her visually impaired, which she may already be. It is impossible to perform a more definitive test to this end in a child so young. If this assumption is correct, Lydia will not be able to see with the left half of either eye. I tried to walk around some this weekend with fingers over that portion of my eyes. :- ) I have been assured that she will be able to adapt amazingly, but this is one function of the brain that is highly unlikely to be assumed by another area.

They do not know if we are talking about a little area where the parietal and occipital lobes meet, or if it is much greater even including the temporal lobe. This is why the next step will be placing grids of electrodes on the very surface of the area of her brain that is in question. These will serve the same purpose as the scalp electrodes that Lydia wore during the video EEG monitoring week before last. These pick up more precise location of brain activity and less “extraneous static”.

Our prayer is that Lydia will have a few seizures after the grids are in place and that the new electrodes will allow the origin of the seizures to be pinpointed. We are also praying that this area will be “removable” with greatest prospect for successful recovery. Like the second SPECT and the MRI, it was decided that a PET scan would probably not be very helpful in Lydia’s case, so we are just waiting now for the first of the two brain surgeries, placement of the electrodes, to be scheduled. The plan is for the epileptic portion of Lydia’s brain (origin of her seizures) to be removed when they go back in to take out the electrodes.

Hurricane Michelle came close enough to Miami to keep many hospital employees home today, so I was unable to get the first surgery scheduled. I will try again tomorrow. Just as we don’t know the date yet, we also don’t know what to expect for Lydia. Another Mom of a sick child once reminded me that doctors can never tell you what your child will or will not be able to do. Only Lydia can be the one to show us! I am not ignoring the medical reality of our news, but I continue to pray for God’s intervention and look forward to giving Him the glory for working these next few critical weeks for Lydia’s good.

Continued Prayers and Blessings,
Allison

P.S. Just after I posted the journal entry this evening I checked our new friend, Raef’s, website for an update. They have devastating news. It has been discovered that his brain tissue that was removed a couple of weeks ago is cancerous! Please remember his family in your prayers and if you have time, please visit the site and leave them a note of encouragement. I am putting a link to his site on the web page. Lydia’s possible visual impairment seems even less significant now.

Sunday, November 04, 2001 at 09:41 PM (CST)

Yes, my friends, today is my birthday! Thank you for the sweet notes. I am a whopping twenty-six years old. I feel like I have aged so much this past year, I must be ancient by now, like THIRTY-six or something! :-) :- 0 Some of you know that Jason makes the most of the days from Nov 4th to Jan 20th, his birthday. He married an older woman by a couple of months. Jason incessantly reminds me of that during this time of the year. This badgering commenced in the days leading up to my very first birthday after we started dating, my eighteenth! I thought that I would nip it all in the bud by getting him good when he finally turned as OLD as I was. For his big day I took him to lunch at a nursing home, then to see Grumpy Old Men. He was impressed with my gumption, but it failed to squelch future teasing!?!?

We have had a good time celebrating this weekend. I have eaten many of my favorite foods that I don’t frequently indulge in (Krispy Kreme doughnuts, home-made yeast rolls, Cinnabons—are you sick yet?). Lydia had her first taste of a Krispy Kreme in honor of the day! I found my first cool Keds shoe store with a great pair on sale in just my size. What woman wouldn’t enjoy a new pair of shoes for her birthday? :- ) I also received beautiful flowers from my hubby and his parents. The best part though was more Lydia smiles. She even decided to start LAUGHING when her Nana was tickling her tonight! I have had a very blessed day!

Isn’t it wonderful that God continues to fill my days with laughter and my heart with joy. Every once in a while I think about what we will be going through over the next few weeks. It is surreal. I had that feeling tonight as we were shopping for a few cute hats for Lydia. I figure they will come in handy for the days ahead when I don’t feel like explaining the scar she will have on her head. As we were checking out I almost laughed when I imagined the reactions that I could illicit if I announced to all those around me why we were buying baby hats. We ladies can make anything into an excuse to shop can’t we! :- )

God’s peace and blessings just keep on coming. Jason and I have had some precious time on the phone lately. It is reminiscent of our early college times before he came around and left GA Tech and joined me at UGA. (Thought some of you Bulldog fans might enjoy that one. :- )) The weeks were long but the together weekends were all the sweeter. He is planning to join us in Florida before the surgeries begin. It will be bittersweet timing, but we longingly anticipate the reunion. God has kept His loving, protective hand on our marriage during these stressful times, yet another thing that I am so grateful for!

Tomorrow I will be calling to start the ball rolling on scheduling Lydia’s first surgery, the implanting of the grid electrodes. I am eager to resolve the question of when so we can proceed with the logistical planning. In the mean time, I pray that we can all find extra rest and relaxation to go in with a full store.

Thank you for your continued prayers.
Older Allison :- )

Saturday, November 03, 2001 at 05:24 PM (CST)

Can you believe that God even gave us a beautiful, sunny “moving day”! We made it safely to Ft. Lauderdale. I am glad that we arrived in plenty of time before the rain begins. It is nice to have a change of scenery and TWO bathrooms! ;-)

Lydia continues to give out many smiles. Over her short life there have been so few of them. I really think that the large amount of drugs had a lot to do with it. But that was the best anyone knew to do for her under the circumstances. Now that she is freed of most of the load, she is just radiating and blooming.

Lydia is sitting up independently for longer periods of time each day. Yesterday I kept popping peas in her mouth and she would grin and chew until she got the goods and then spit out the skin. Pretty impressive don’t you think? Laboring and long anticipation brings such heightened joy and appreciation. In this case we have been waiting for Lydia’s development, including her ability to interact with us. Every time she whips her head around and grins at me, I know that I am witnessing a miracle!

The literature that Dr. Duchowny gave me yesterday stated that parents frequently reported rapid developmental advancement post surgery. This was in babies that had been battling for every little milestone! Isn’t that exciting! How I want that for Lydia. Even if it did not work, I know that her life is worth the fight. At the same time, I was taken aback by my feelings of dread when the next steps in this process were confirmed. I don’t want to make my smiley girl miserable and irritable by sleep depriving her again to get seizures. I don’t like the idea of inviting more seizures to frolic in her brain. But I know that this is the cross that we have been given. I am thankful that we are not asked to bare it alone.

I want to thank Mallory’s Daddy for his thoughtful guest book entry today. We are grateful for all of you, such a dear circle of friends. God has used so many to bless us. Isn’t it wonderful how He is even bringing so much good out of Mallory’s experiences and struggles? I appreciate them looking out for us and sharing the wisdom that only comes from hindsight. I must tell you that God has provided for our EVERY need and so many of our wants. Only He knows our future and we will continue to trust in His provision. Your prayers, notes, and even your visits to the site bless me. Some day when Lydia needs encouragement, I look forward to being able to tell her about how many people love her and have prayed for her.

Thank you for blessing us,
Allison

Saturday, November 03, 2001 at 12:02 AM (CST)

I have had a hard time getting around to posting this evening. We did get to meet with Dr. Duchowny this afternoon and I have a lot of information to process. Jason and I spent a long time talking and taking it all in. I’ll expound on it more later, but basically, Dr. Duchowny definitely thinks that Lydia should have brain surgery, sooner than later. After a long conversation with Lydia’s primary neurologist, Dr. Pearlman, he was impressed with a sense of urgency. They discussed the seriousness of Lydia’s hospitalization in July because of “catastrophic” seizure activity. Dr. Duchowny does not advise wasting any time because of the risk of a repeat of that event.

The tricky part is that he still doesn’t have enough information to know exactly what surgery needs to be done. In order to obtain this information, they are going to have to perform an additional initial surgery to insert grids of electrodes on Lydia’s brain. If you haven’t already, I would highly recommend reading Mallory’s story. There is a link at the bottom of the page. It is not only inspiring and godly, but very informational. Mallory went through the same type of process. The person who will schedule Lydia’s surgeries may be back in to office on Monday. Hopefully we can get a better idea of a timeline then.

Based upon the scheduling and more even more iminate, hurricane Michelle, our location may be changing several times over the next few weeks. We are going to leave the apartment in the morning and head to my parents’ in Ft. Lauderdale. An evacuation plan was delivered to us this evening from the hospital. If we were to stay here and Michelle did pay us a visit, we would have to stay in a make-shift shelter in the hospital auditorium until the storm passed. That doesn’t sound like my idea of a fun time!?!?

On a practical note, several have requested a mailing address. I put the address of one of Mom’s friends at the bottom of the page. Jane agreed to act as our mail collector. :- ) If the weather gets too ominous we may even end up at staying with Jane and her husband in their better equipped house.

On several levels this weekend is going to be one of waiting and anticipation. I am weary but more peaceful after a few hours of wrestling with today’s news. Lydia’s continued smiles are a blessed source of light. I thank God for that provision. Much of what Dr.Duchowny said today was exactly what we have been hoping and praying for. A few things just caught me off gaurd. I know that none of this is throwing God for a loop. He is good all the time, and His works mightier than I can imagine. We just never know what form they will take, do we?

Still So Blessed,
Allison

Thursday, November 01, 2001 at 07:08 PM (CST)

The rest of the day went fine including a much needed nap for Lydia and me. The same oral sedation worked quickly and then we did not have to wait very long to get in for the scan. The nurse even gave Mom and me our choice of dum dums while we were waiting for Lydia to wake up! ;-) They let us leave with the I.V. still in Lydia’s hand. She doesn’t seem to mind a bit. Again we taped a pacifier to it. She is enjoying manipulating and chewing on the pacifier. Nana is less one sock. We made a hand puppet out of it with a little hole for the pacifier in order to keep Lydia from pulling at the I.V. tubing. Please pray that the I.V. will remain good until the PET scan if we have one. I was taught how to flush it and what to problems to look for (Like I haven’t learned all this from observation over the past year!). :- )

We were still not able to see Dr. Duchowny. Today may not have been the best time anyway. It wasn’t until half way into my sucker that I realized my mouth was berry blue! I don’t know if he would have taken me very seriously looking like that. :- ) Tomorrow at three we finally an appointment time. He should have seen today’s SPECT by then, but I still don’t really expect to learn any breaking news. I just hope to get a few more details on where we stand. We needed something to do tomorrow anyway, right?

My spirits are better than they were yesterday. I am glad that we have a merciful God. One thing I love about the Psalms is seeing some of David’s mood swings! I still struggle with the flesh even when I know God’s truth is unwavering.

Think of us as you watch ER tonight. :-)
Allison

Thursday, November 01, 2001 at 10:35 AM (CST)

We are back at the apt. for about an hour after spending the morning at the hospital. I think they let us escape because they felt sorry for us. It took four nurses, starting with the I.V. nurse, and seven sticks before they were successful in getting the proper vein access. We actually left with two I.V.'s, one in her hand and one in her head. It was only after getting the I.V. in her head that we were informed that the head isn't an appropriate location for the radioactive injection. That's why they proceeded with the fifth, sixth, and seventh sticks.

The scan is to be done about an hour and a half after the injection. I am glad that we get to spend the time at the apartment so Lydia can get in a little nap. There were unhappy kidos all around us at the hospital which made it quite loud. One good thing is that we have convinced them to leave in at least one of the I.V.s until they decide if she is going to have a PET scan.

Again Lydia was as sweet as can be. She did let the whole wing of the hospital know that she didn't like being stuck, but during the brakes she rested quietly in my arms. I think she has captured the hearts of a few more. We are getting to be friends with the staff since we have been down for so many scans over the past few days. ;-)

Pray that we will be able to get in to meet with Dr.Duchowny when we need to. I had been told that we would do that after the scan but I do not know if that is still the plan or not.

I'll post again tonight to let you know how the rest of the day has gone. The SPECT itself should be much less tramatic than the preparation was. Right now I'm going to eat my lunch that Mama fixed for me. I'm glad she's here to spoil me a little! :-)

Allison

P.S. I almost forgot a couple other bits of good news! Gene scanned a couple new photos of Lydia that are now in the photo album. Also, Raef was released from the hospital today. His family is planning on flying back to KS tomorrow! He looks great.

Wednesday, October 31, 2001 at 12:56 PM (CST)

I got a brief summary of the results of todays meeting. It was not as resolute as hoped for, but here it is. Surgery is an option but they do not feel like they have enough info yet. One problem is that the MRI was so normal, this is not unusual because of Lydia's age. The SPECT was abnormal, but the injection was late, remember they have told me that she seized a long time before I could see her doing anything. This makes it impossible for them to inject her at the very onset based only on my instructions.

They are scheduling an interictal (not seizing) SPECT for tomorrow, and an appt. with Dr. Duchowny right afterwards. He should give me more details such as what surgery they are even discussing. Based on the results of the next SPECT they may send us across town for a PET scan. This type of scan is supposed to be far superior to a SPECT! More tests and more waiting, but at least they are not drawing conclusions based on insufficient information. Keep up the praying!

I think that the girls (Mama, Lydia and myself) are going to have to go out shopping for some distraction. I am still grateful and know that God is handling this in His perfect timing, but I am just a bit antsy this afternoon. I need to get some of this pent up energy out. ;-)

Tomorrow we will have to repeat the same familiar steps--fasting for Lydia, then an I.V., sedation, wait an hour or so, then have the scan, wait for her to wake up, and so on. Grrrr! Definitely need to get out today so I will be able to go in there tomorrow with a patient heart. Lydia is so happy and content. She is helping her Mama keep in check.

Still Praying,
Allison

Wednesday, October 31, 2001 at 08:58 AM (CST)

“God be merciful and gracious to us and bless us and cause His face to shine on us and among us-Shelah-That Your way may be known upon the earth, your saving power among all the nations” (Ps 67:1-2 amplified). I am praying this scripture for Lydia and for my family. I pray that God will shine His face on us by removing the seizures from Lydia and that His way to this end will be know by the doctors as they meet this morning.

I know that God’s saving power is more than adequate to fulfill this request. At the same time, I know Romans 8:28 states that God will work all things for our good and His glory. Our good means to become like Christ and Christ plead for the cross to be taken from Him. His request was denied because the cross was to be His way to best glorify God. Lydia may never be seizure free on this earth. I continue to pray that she will be healed but even if she isn’t: “I will bless the Lord at all times; His praise shall continually be in my mouth. My life makes its boast in the Lord; let the humble and afflicted hear and be glad. O magnify the Lord with me, and let us exalt His name together.” (Ps. 34:1-3)

The meeting is expected to last until noon, and then I should hear whether or not they recommend surgery. Thank you for praying with us! Lydia is so happy this morning. We all slept well. As I said in my journal entry last night, God has truly given me a peace that passes understanding. I will let everyone know the outcome as soon as I can. We will be meeting with the doctor either this afternoon or tomorrow to further discuss Lydia’s future. Pray that I will have clarity of mind to ask all of the questions that I need to.

Prayerfully,
Allison

Tuesday, October 30, 2001 at 05:23 PM (CST)

We have had a very relaxing day, at least most of it. We decided to take a walk to the hospital to visit with the nurse and pick up some samples. During the walk back it was sprinkling with increasing intensity. Nothing like a little walk in the rain. ;-) I found it invigorating. Mom uses other words to describe it! It was a first for Lydia. I think 13 months is plenty long to wait for your first walk in the rain. It was starting to get heavier as we got close to the apartment. A kind stranger volunteered to give us a ride, but we declined because we were very near our destination. I still appreciated the offer.

Lydia “sang” herself to sleep last night and woke up in the same bubbly, verbose mood. It was wonderful. She has been very pleasant today. I did not realize it, but Mama pointed out that this has been the first time that either she or my Dad have seen Lydia smile! She has been sick, seizing, or sedated every other time they have been together. I am grateful that they are finally getting to see first hand what a sweet happy little granddaughter they have.

My Mom even got Lydia to ENJOY eating part of a banana and a few peanut butter crackers today! Food has also been a source of joy for me the past couple of days. Last night and again this morning I got into the kitchen and COOKED! It humors me how a task can be a chore one week and a thrill next. I have done a lot less cooking this past year and I have missed it. Doing something so normal has become a novelty! Many have been so kind in providing meals for us when I just did not have the energy left to fix anything myself. I know that his parents are making sure that he stays well fed, but I do hate that Jason wasn’t with me to enjoy last night’s meal. He has been so understanding, but he persists that he sure does LOVE my cooking. Good thing for a husband to say, huh? ;-)

The nurse promised to call and let us know about the outcome of the meeting tomorrow morning. She will then set up an appointment for either tomorrow or Thursday so I can go through all of my questions with Dr.Duchowny. Tomorrow seems so close yet so far away. It could be the news that changes our lives! I have a God given peace that passes understanding. I plan on sleeping well tonight. Please continue to pray for wisdom for the doctors tomorrow. I know so many of you are!

Continued Blessings,
Allison

Monday, October 29, 2001 at 08:02 PM (CST)

Belinda is so right. God is frequently unpredictable, but He is always GOOD! He can also be slower than anyone I know, yet He is always on time. :- ) I am exhausted. Today felt like an epic journey that would never end. Don’t get me wrong, it went well, just long.

It really started yesterday. We were not able to keep the seizures away. We were able to stop them though. I had to drop a feeding tube. With so much throwing up and the fasting for the MRI today, I decided that we were flirting too much with dehydration/another UTI/more seizures. This way we were able to sneak in a couple of extra feedings through the night while she was sleeping. We had to be up and ready at 6:00 this morning because we did not know what time we would need to be at the hospital. For those of you who do not know, I am not the morning person in our family. (That would be Jason!)

Lydia’s appointment wasn’t until one, requiring us to be there at 12:15. I have had such frustrating experiences waiting for tests. I walked in impatient before they even had a chance to prove themselves. I smile when I think about it. God helped change my sinful heart by providing distraction in the form of entertainment! The clown care team came by and played and sang Lydia a series of Peter, Paul, and Mary style songs. They blew bubbles, juggled and pulled out all kinds of silly toys. Lydia was the primary audience, but I think it did me even more good! It filled most of the waiting time.

Next I went on perform in my first recording studio! Well, I had to talk into a microphone with impromptu “speeches” of varied genres—excited, soothing, . . .. While I was playing Mom was not having as much fun. She was holding Lydia during two unsuccessful attempts at a precautionary I.V.. She later reminded me that she passed out at the sight of me getting stitches as a child. She was afraid that if I did not come back sooooon, they would have another patient to take care of and scoop up off of the floor.:-0 It was decided that an I.V. wasn’t that necessary and all were thankful!

They played my recording as well as songs from Lydia’s favorite toy during the functional MRI portion of her scan. All geared up with headphones and special goggles, Lydia was observed to see what portions of her brain would respond to Mama’s voice, music, and lights. This mapping of the brain would be much more involved and detailed with an older child or adult. Using it for infants is still a very new application. They have done quite a few normal babies in order to have something to compare the results of our special kids’ scans to. It is fascinating.

The MRI took two and a half hours! Historically Lydia’s MRI’s have all been completely normal. There are certainly many things that we don’t want to be there, but it would sure be nice if some information would show up that could be helpful in treating her. The initial unofficial review of the films was clear—nothing grossly wrong.

We were all spent by the time it was over. Gratefully, Lydia’s sedation wore off shortly after getting to the recovery room so we didn’t have to stay much longer. She woke up with a sluggish smile and nursed immediately. Good girl! Finally home by 6:30!

Even with the continuous draining activities Lydia had a much better day today. No more seizures but quite a few smiles!!!! I am looking forward to resting tomorrow as we wait for the next big day, Wednesday. Wednesday morning the experts will review all the gathered information and put their heads together to discuss it. That afternoon we should hear their opinions on the best treatment plan for our precious one. Sunday’s seizures made me even more eager. May God grant them His wisdom!

Again I agree with Belinda’s guestbook entry in persisting to pray for Lydia’s complete healing. May He continue to work this for Lydia’s good and His glory. He has blessed us with such a sweet girl. Her Uncle Jeff sent some of his favorite pictures for us to update the photos section. We have also gotten some cute ones developed from the past week and hope to get them scanned and put on the page soon. Thanks for the continued interest and prayers.

Tired but excited,
Allison

Sunday, October 28, 2001 at 12:28 PM (CST)

Well, Miss Lydia is still more alert, but she feels yucky. Somehow I always think that just one night of long interrupted sleep will make us all feel better. It certainly helps, but it takes a few more than that to catch up.

Lydia has been fussy and throwing up today. As far as I can tell at this point, it is all still neurological stuff--preseizure symptoms rather than an infection. We are doing all we can to keep it from progressing to seizures. Please pray to that effect. It is still hard to believe that just a couple days ago we wanted seizures.

Tomorrow she is supposed to go back to the hospital for an outpatient MRI. They have not told us what time. Pray that it will be done as efficiently as possible. This isn't a good time to further wear Lydia out. I want her back here resting. She will have to fast tomorrow until they work us in, another reason why it would be nice to get it done early.

I don't know whether or not they wrote orders for contrast dye to be injected for the scan. If so I imagine she would need an I.V.. Pray for precision for the nurse. Lydia's two easiest veins were tapped out last week which could make an already difficult stick even more daunting.

Lydia is finally in her bed napping peacefully. Hopefully she will wake up a little happier. The weather here is georgous. It is actually a little cool! They temperature dropped into the 60's last night and I saw a lady in a turtleneck sweater. :-) She did still have on flip flops though!

I pray that you have all had a great weekend. Dad and I may even try to go out to the movies tonight and let Mama keep Lydia. It has been a while since I have done that! Contentment whatever the circumstances right?

More later,
Allison

Saturday, October 27, 2001 at 11:48 AM (CDT)

We’ve checked out of the hospital!!!!! Lydia and I have joined my parents at the apartment. It is only three blocks from the hospital, certainly close enough if we have a problem, but much better sleeping arrangements! :- ) Lydia and I both had a great night sleep.

Dr. Duchowny agreed to give Lydia a try with just one anticonvulsant—Depakene (the sweet medicine that she takes most willingly). This means that it should no longer take an NG tube to get her medicine down. We pulled it out this morning. This may or may not last long, but from what we have seen, the seizures seem to just do their thing regardless. If she does not have them with any greater frequency, we would certainly rather leave the majority of the drugs off and give her a better chance at development. She is already more responsive.

Our funny looking blessing this morning was a burp! Well, kinda. Lydia is historically a stoic. Don’t get me wrong, she has expressions of her feelings, they just are not very frequent or intense. This pretty little girl let out a grizzly manly burp and looked up with a big grin. Never thought I would be so excited about a burp. That was one of many smiles this morning. A little uninterrupted sleep did us all a lot of good.

Yesterday morning’s blessed seizure is the last one she has had. We are praying that they stay at bay now. I finally realized the blessing behind all that time sitting in hospital waiting without seizures! Less drugs! If she seized all week, there would have been less incentive to take off so many. Even if it’s just for a short season I am enjoying the heightened interaction with my baby. It is a precious blessing for sure.

I never dreamed that this site would get 1000 hits in less than a week! Thank you for the support. Your interest, prayers, and encouraging guestbook entries are treasured. Again we are blessed, by so many wonderful friends and loving family.

Continued Blessings,
Allison

Friday, October 26, 2001 at 04:31 PM (CDT)

Hallelujah! This morning when we told the tech that it had been four days since the last seizure he lost all hope of a successful scan for the day. The average wait in that room for the magical seizure needed for the injection is 2½ days. Against all human odds we got it in less than an HOUR! We had just enough time to handle the formalities and forms and then it happened. She starts to look funny, I call out her name, and 5 seconds later they have the contrast solution mixed and injected. Amazing. This was likely the most critical test in this stage of the work-up, the only one that she has never had preformed before.

We had tried everything to get her to seize and I finally gave up. I faced the familiar but easily neglected truth of God’s Sovereignty. It applies to Lydia too!!! If He hasn’t signed off on it, she’s not going to seize no matter what the circumstances! He will certainly get the glory here.

Based on her history Lydia should have been seizing all week long. She started Monday. I say started because she almost always seizes for a few days in a row. Also, we had been sleep depriving her since Wednesday. We had gotten so desperate that we only let the poor girl sleep for 1½ hours in the last 24. Normally it merely takes missing a solitary nap to push her over into seizure land and that’s while she was on a BUNCH of drugs to prevent it. The drugs are almost all gone and cold turkey weans at that! The conditions have been optimal for days, but God saw fit to spare Lydia’s body from a week of seizures and instead save it for the one most critical moment. Almost always, her seizures have lasted until we hit her with strong meds to stop them. This last seizure, like the one Monday stopped with just a few swipes of the magnet over her Vagus Nerve Stimulator. God is so good!

With the drugs leaving her body, Lydia is getting stronger each day. Normally when she starts to get sleepy she her head control really suffers. Even throughout the sleepless night she would sit up with minimal support and look all around the room while fussing. It is so exciting.

Because she was soooooo sleepy, it only took a mild sleeping medication to sedate her for the SPECT scan. Lydia has become very resistant to this category of drugs and normally it could have taken so much more. They were not able to schedule the MRI for today, but I still count this day a whopping success. That will be scheduled for Monday. We are waiting to see if we will be staying in the hospital over the weekend or going to the apartment three blocks away. The MRI is the last piece of information needed before they can present her case to the surgical/neurology team at rounds on Wednesday. The neuro fellow has already been by to say that the SPECT looks great.

Whew! We can stop praying for seizures now! The consistent prayer is still just for God’s best. That never changes even though it is sometimes hard for us to recognize. Today was an answer to that prayer. It was an absolute MIRACLE. Thank you God for bringing us this far. We cancelled our Angelflight for tomorrow. We don’t think that God is finished here yet and we’re ready to hang around and find out!

Thanks for the prayers!
Allison

Thursday, October 25, 2001 at 04:02 PM (CDT)

We are going to give Papa (my dad) the night shift tonight. Sleep deprivation is our latest plan of action to invite seizures. Poor thing hasn't had a nap at all today and her eyes are puffy and red from the crying. Lydia has thrown up once which believe it or not is a good thing. This often preceeds her seizures by minutes, hours, or even days. She was released to start eating again after about eleven. Each nursing has calmed her for a while. We have probably watched more Veggie Tales, etc. today than I have in my whole life! It worked though. :-) Between Lydia's paternal uncle and maternal grandfather, she definitely got some strong t.v. loving genes! She is still more pleasant than I think I would be. Such a sweet temperment!

The Phenobarb has now been stopped completely and the only remaining anticonvulsant, Depakene, has been reduced by half.

I'm told that the ideal would be to have two short seizures tonight and then one more tomorrow for the SPECT. Lydia and I will go down to a special room tomorrow morning at eight. They will be set up there to quickly inject her with the dye when a seizure starts. If she does not seize by two, we will give up on the SPECT for the week. If all goes as planned and we do get that sought after seizure, they will remove the EEG electrodes and proceed with the SPECT and the MRI. This would conclude Phase I.

I told Dr.Duchowny that that would be great, but that we are not only willing, but eager to stay as long as would be helpful to make the best informed decisions for Lydia. Our conversation again went to how much experience this hospital has with problems like Lydia's. He pointed out that Miami Childrens has been doing video EEGs since 1981. Then he looked at me in my shorts overalls and sneakers and grinned as he asked if I was even born then. Thought my "older" friends might enjoy that.

I am confident that God knows what we need and pray that He will work this out in His perfect timing for our good and His glory. From my meager point of view, our need is seizures. I am so glad that His vantage point is sooooooo much greater. He has done an exceptionally good job getting us where we are. :-) I know that He isn't finished yet. It is exciting to anticipate what blessings He has in store for us. You never know what the next one will look like. We are asking for some strange ones here!?!?

Thanks for your continued interest and prayers.

Allison

Thursday, October 25, 2001 at 07:47 AM (CDT)

Seizures where are you? Lydia has still only had one since we have been here. They need some more! God is continuing to stretch me. I think that today I should be grateful for the screaming Lydia is doing. She's usually in a foul mood before a seizure.

We did not let her nap much yesterday so she is irritable and tired now. This is of course aggrivated by her lack of breakfast. It was only after my mom got here this morning that my ears stopped ringing from the crying. I did not know that she still had that loud of a cry in her. :-) Mama holding her did not help because I think she could smell the forbidden milk. ;-)

On a funny note, I had a breastmilk storage question when I got here so I called info for the lactation consultant. They forwarded me to catering! I do not have THAT much extra milk that I can donate?!?!

Yesterday little Lydia had a special treat. Her 5th and 6th teeth are breaking through. Nana (my mom) rubbed Lydia's tender gums with a small peanut butter ritz cracker and she loved it! The same child that takes an hour to eat a couple of tablespoons of pureed food ate 3 crackers in about 10 minutes. We'll work on the no eating in bed rule later and just celebrate this time.

Keep praying for seizures!!??!!

Allison

Wednesday, October 24, 2001 at 02:18 PM (CDT)

Still no more seizures yet. We do have more info though. Upon examining the one seizure that has been recorded, they had a hard time finding the beginning. They started looking at the tape from the time I pushed the button to alert them. Then they had to print backwards for a LONG time. Apparently the seizure had been going on for at least ten minutes before Lydia woke up and started showing signs. It now looks like it originated in the Right Parietal Lobe and ultimately spread to the Temporal and Frontal Lobes. This is such important information! He reminded me of how much more dangerous this can be. It is very possible that many of her past seizures have also been “non-convulsive” long before they were recognized and then treated. In an older child, these seizures would probably be recognized as a state of confusion. I have to do research on the Parietal Lobe now. That’s a new one for me.

Dr. Duchowny stopped another one of her meds (Keppra) and further decreased the Phenobarb. He definitely wants more seizures to compare to this one. Today I learned that we will not try to do the SPECT scan until we get all the seizures we need on the EEG, so Lydia is getting to eat again. When we start trying for it again they will only keep her NPO for the morning. If no seizure by the early afternoon we will give up for the day and let her resume eating. This is much more baby friendly!

Last night’s new I.V. is in Lydia’s hand, on which she usually chews. To keep her from eating the board we have taped a pacifier onto it. It’s pretty cool to always have a new toy right there. She is having a good time with it. ; )

In an earlier post I mentioned our eight month old neighbor Raef. His Right Hemisphere was removed yesterday and he is doing great. He is still moving both sides of his body which means that his left side of his brain was already making up for the abnormal right. Isn’t God’s creation amazing! The neurologist was humorously saying that the brain is a favorite organ that we certainly need, but it is amazingly resilient in little kids.

This Epilepsy Center has done over 450 surgeries for epilepsy with the average age of the patient being 8! I feel a real peace that God has put us in the right place. They are still laughing as they tell me that Lydia’s seizure was so textbook perfect. They see so many kids with malformed brains and therefore off the wall EEGs/seizures. Never thought I’d put the words perfect and seizure together!!!

Still praying for more seizures. Lydia is still smiling and having a good time.

Allison

Tuesday, October 23, 2001 at 10:34 PM (CDT)

On another happy note, I forgot to mention that today is EIGHT years since Jason and my first date! It is so hard to believe. Thought I'd give the page a new look for the occasion. :-)

Allison

Tuesday, October 23, 2001 at 09:53 PM (CDT)

It has been a slow day. As far as I know Lydia has not had any more seizures. Lydia’s I.V stopped working this evening. They just came in and got another one on the FIRST try. Praise God! That has not happened in a long time. I am so glad that we found out that the other one was bad tonight when it wasn’t time sensitive.

Hopefully tomorrow they will be able to do her SPECT scan. For this test to be the most informative, they will need to inject contrast dye into her vein at the very beginning of a seizure.

I am so grateful to have a computer to post these updates and read the guest book entries. Last Friday I was giving the web page address to Lydia’s speech therapist. I told her that I sure wished that I had a laptop to take on the trip. She immediately volunteered that she had an extra one I could borrow! God’s continued provisions amaze me. This has certainly been a source of emotional and spiritual sustenance for me.

I need to go give Lydia her last feeding before she is NPO. She will be able to eat again only once we get that seizure for the scan.

Allison

Tuesday, October 23, 2001 at 10:09 AM (CDT)

Well, it did not take long. Last night Lydia had her first seizure. It was typical, meaning facial,which is what they need. They got the important info, then the seizure stopped with one magnet swipe over her VNS. That was a blessing!

The neurologist came in this morning very animated and pleased. Dr. Duchowny put on his Donald Duck voice for Lydia's entertainment. He said that last night's seizure was one of the most clear cut in origin that he has seen in a long time. It started in her right temporal lobe. Because it was so clear, he said that we may not need many more. He would like at least a couple more to compare.

The MRI will be worked in whenever the schedule is open in the next couple of days. Lydia will be NPO (no food/drink by mouth) starting tomorrow morning to prepare for the SPECT scan. We pray that she will seize sooner than later so we can get that test over with. They are willing to wait up to three days, but that would be a long time with a fussy hungry baby.

So far Lydia just cannot smile enough. She is being so pleasant. I feel like God is even using her to encourage us.

Last night could not have been more perfect. One needed seizure, then she smiled and went to sleep so I could get some much needed rest.

Thanks for the many guestbook entries. It has been a blessing to log on and read notes from so many new and old friends.

Pray for more short seizures today.
Allison

Monday, October 22, 2001 at 04:27 PM (CDT)

Lydia was admited this morning to the hospital for a Phase I work-up in their Comprehensive Epilepsy Program. We are praying that they will be able to offer us further diagnosis/treatment for Lydia's seizures.

Part of the goal is to capture the begining of several seizures on the machines. She is hooked up to a video EEG. Tonight they will be stopping one of her seizure meds (Topamax) and decreasing another (Phenobarb). They are hoping that this will trigger some seizures. Also, they will need to inject a contrast at the begining of a seizure for a SPECT scan. Both of these tests show where the seizures are taking place in her brain. If they are coming from one area consistantly, theoretically that would make her a surgical candidate--remove or disconnect that part and eliminate the seizures. I never dreamed that I would be praying that brain surgery was an option, but I am.

If it isn't, we still pray that they will be able to offer some kind of treatment that will help her. There just are not many things left though.

Everyone here has been very nice. We met Dr. Duchowny today and look forward to working with him. He said that Lydia is going to challange them.

Thanks for the many uplifting notes in the guestbook.

Allison

Monday, October 22, 2001 at 06:20 AM (CDT)

What a blessed trip! Lydia and I were scheduled to travel to Florida by way of Angelflight, a volunteer organization set up to transport children to specialty appointments. Less than 24 hours prior to our departure, one of the pilots sent word that he would not be able to keep the flight. After hours of frantic calling I finally conceded to drive over two days. Mere minutes later TWO different people volunteered their planes and services. One of these was already scheduled to fly to the Keys this weekend and offered to drop us off at Ft. Lauderdale on the way. We took him up on it!

Our original trip was to be five hours consisting of two legs, one on a single engine plane. We ended up getting to Florida on a two-hour direct flight. The bottom line is that we had a delightful, easy trip with minimal wear on the little princess. Words cannot express our gratitude to Wayne and Virginia Reeves for their generosity.

We are staying in an apartment near the hospital set up similar to a Ronald McDonald house. It is perfect for our home base. My parents will sleep here while Lydia and I stay at the hospital starting tomorrow.

Our neighbor is a precious 8 month old baby boy, Raef. He is scheduled for a right hemispherectomy on Tuesday. Please keep Raef and his family in your prayers. His epileptologist is the same one that is admitting Lydia tomorrow. We were able to share with them a series of articles that were in our local paper. These articles were about a little girl, Mallory, who is thriving after her second brain surgery. I have included links to Mallory’s Web Page and to the series of articles at the bottom of the page.

I am in awe that God chose to use even our travel plans as a beautiful way to express His meticulous concern and love for us. I am excited about what this week holds for Lydia. I still have butterflies in my tummy though. :-)

Thanks for your continued prayers.

Allison

P.S. I have figured out that my computer isn't refreshing properly. Sorry about the duplicate entries. Everything before this one is a duplicate. We are ready to roll now. I am off to get ready to check in to the hospital.

Sunday, October 21, 2001 at 11:12 PM (CDT)

What a blessed trip! Lydia and I were scheduled to travel to Florida by way of Angelflight, a volunteer organization set up to transport children to specialty appointments. Less than 24 hours prior to our departure, one of the pilots sent word that he would not be able to keep the flight. After hours of frantic calling I finally conceded to drive over two days. Mere minutes later TWO different people volunteered their planes and services. One of these was already scheduled to fly to the Keys this weekend and offered to drop us off at Ft. Lauderdale on the way. We took him up on it!

Our original trip was to be five hours consisting of two legs, one on a single engine plane. We ended up getting to Florida on a two-hour direct flight. The bottom line is that we had a delightful, easy trip with minimal wear on the little princess. Words cannot express our gratitude to Wayne and Virginia Reeves for their generosity.

I am in awe that God chose to use even our travel plans as a beautiful way to express His meticulous concern and love for us. I am excited about what this week holds for Lydia. I still have butterflies in my tummy though. :-)

Thanks for your continued prayers.

Allison

Sunday, October 21, 2001 at 1:05 PM (EDT)

Lydia and I just arrived in Ft. Lauderdale from Macon. More details will follow. Allison

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