Wednesday, October 17, 2012 5:42 PM EST

My Dad’s surgery is scheduled for tomorrow and we got the final approval from the vascular surgeon today. Everything is set and my Dad has been “marked” for surgery confirming the right side with what the doc called a tattoo, to ensure no mistakes on where they are operating. We have to be at the hospital at 6:30 in the AM. The plan is for my brother (who lives with my parents) to bring them to the hospital where I will be waiting. We have to be there at 6:30 AM for the 8:30 AM surgery. The surgeon has told us that the operation will take approximately 2 hours, then he will transferred to recovery. Once he has recovered we will be able to see him. They plan to have my Dad up in a chair tomorrow night...which will help promote healing. My Dad is tough, so while I know he will be in pain, he will be very stoic.

I stopped by the drugstore so my Mom could get her flu shot on the way to their home. That was one more thing to cross off our list. We also brought their dog home to play, my Mom should be away a good portion of the days and we might even convince her to sleep over here, so it will be nice for Squeaky to have a playmate (or 5 counting Bandit)

It has been quite busy this week (I know, what is new). Lisa needed a 24 hour BP cuff again, her BP has been up and they want to determine if she needs her meds adjusted. David, Lisa and I have not been well. Christian has been helping me a lot once again. He of course will be in charge while I am gone most of tomorrow and is taking David to his Aviation Explorer’s for me tonight. The children LOVE for big bro to take them places and he has been very kind to oblige them.

We have had some truly sad news the past week amongst our Make A Wish friends. This is the perfect time to tell you our family has a team in the Walk for Wishes to be held November 10, 2012. We are team Bettendorf’s Bountiful Blessings! I would love it if you could support one or all of us. Want to help? (NO PRESSURE)!

This link will take you to our general page. Just pick one of the children (NOT me please) and give to them. Honestly NO amount is too small.

FYI: The money we raise for the Walk for Wishes is NOT for our family. It is for the THREE HUNDRED children in our area who are currently waiting to have their wish fulfilled. As you know, Lisa was blessed with her MAW trip of a lifetime last October and it was a HUGE blessing to her. We are always looking for ways to give back and we want to honor Lisa. NO AMOUNT is too small! Even a dollar helps. If you would prefer to not donate online; but, still want to help. Please let me know.

Thank you for all of the kind messages of support and the prayers. It means so much to me. I am thankful for all of you. I will update on my Dad as soon as possible.

Saturday, October 13, 2012 7:59 PM CDT

My Mom wanted me to send out a prayer request for those who will share with others at their church tomorrow. Thank you!

Please continue to pray for my Dad and his upcoming surgery on Thursday, October 18. He has completed most of the tests they needed to ensure he was strong enough to endure the surgery and everything has come back better than we could have hoped. He remains in considerable pain most of the time and is looking forward to having the surgery. The vascular surgeon and pulmonologist have both warned him the surgery he is under going is exceptionally painful itself. The surgical plan is:

Remove as much of the tumor from the pleural wall as possible

Remove the upper lobe of his right lung

Take out all lymph nodes they can find and check for cancer

Remove part of the rib if it is involved at all

He will be hospitalized for at LEAST a week.

Depending on how stable he is he will either return to my parents home or come to ours to recover, to forgo a nursing home stay. My parents, as well as myself so appreciate and covet your prayers and my Mom wanted me to add what a blessing I have been to them. I consider it a labor of love, they need me. I have an amazing husband and children who support me in this.

PLEASE feel free to share with all of your prayer warriors, your church families and anyone else who is a believer. God has been so gracious to our family and I know He will once again provide for all of our needs. I need for my Dad to be as pain free as possible, for the surgery to be successful, for my Mom to stay as healthy as possible and my family to have strength to do all that needs to be accomplished.

Tuesday, October 9, 2012 4:58 AM EST

More Info: I wanted to share some more happy news. This is Lisa's first year of being able to take Theater Classes through the School of Theater Training (you have to be in third grade) through the Children's Theater. This is Rachel's fourth year and Lisa has been SO excited she could finally join. Her class is for third and fourth graders and is musical theater. Rachel is taking high school Shakespeare this year. Lisa came dancing out of her theater class tonight all excited. She has been chosen to be the lead in the musical! She is thrilled and studied her script all the way home. They are singing, dancing and acting and she is good at all three so I am not surprised, just incredibly happy for her...because SHE is happy!

As for her appointment: We still have some not good things to look forward to, but at least not in the imminent future...it should be a happy Christmas at my house! Because she is tall, her valve will need to replaced much sooner than expected. The heart is growing around the valve; however, the leaflets are still moving as needed, which is a blessing. Her pulmonary stenosis is at 11nd typically that would be the sign it HAS to be repaired. They are waiting for her to be big enough and I say while typically you would want Lisa to stay short for a long time, in view of the pulmonary stenosis NEEDING repair, her height WILL be a good thing...in Gods time. There is so much more, but I will not bore you...she still has some vascular issues and the hypertension and autonomic problems...but we are NOT heading to Philly and I am THRILLED so 'nuff said!

Lisa was having a late dinner and I was so excited and said we were celebrating such a great day! She said but it is raining and cold outside and I don't have any clothes ( I didn't realize all her pants and shirts were too small that had long sleeves. I have been a bit distracted and it has been hot). I told her it was WARM and dry inside, she had a great MD appt. and had just gotten the lead in the musical...looks like a GREAT day to me...and she agreed!

Have a wonderful day, mine will be exceptionally busy and I need to hit the shower...




Monday, October 8, 2012 7:58 PM EST

Feeling VERY Thankfull! No trip to Philly (CHOP) at this time. I could cry with gratitude. More later on this. One more piece of exciting news!

Lisa is taking her first year long theater class and she was picked tonight to play the lead in the musical! She is BEYOND excited!



Monday, October 8, 2012 7:13 AM EST


Ginger, you didn't miss any updates. Lisa has had two strokes and wears the leg brace on her right leg for stability and support...if she has on dress shoes (not often) the brace doesn't fit. It has been SUCH a blessing to keep her from falling over the past couple of years.

Thank you all for sharing in the wonder of this amazing story and for LETTING ME KNOW! Lots of people read here and I appreciate your telling me you are still here.

The night was so amazing and emotion filled. The music was stellar and they showed a brief clip of children wanting to be adopted, etc...Honestly, I was ready to sign up and take one of them home...or all of them, when you hear these children (mostly teens who are about to age out of the system saying they just want a family) well I was in tears. But the night wasn't about adoption, it was about providing lessons to these children so that they could move forward with a passion they may have...they might not have the most stable of home lives, or might be in the adoption system but music could be a lasting legacy for these children...how incredible is that?!? I had another God moment as I was in the audience...I realized that the agency that had been formed for NC encompassed the Thompson Children's Home here in Charlotte. I volunteered there when I was in High School...At one point in time (Not long after Rachel was born) Pete and I were planning on becoming foster parents to keep babies after delivery until they went to their adoptive families (a process that takes about 3 weeks). Getting the classes to coincide with our schedules was too challenging (we couldn't take them individually, we had to go as a couple) and that never happened. I have always had a heart for these children and last night it felt so uplifting that in the midst of what might not be an ideal living situation, they would have music to encourage them.

Rachel was AMAZING as always. The entire concert was full of the most seasoned veterans and it was a joy to be a part of it. Laurie was full of so much emotion and just loved and hugged on Lisa after the show (we didn't see her before hand, although Pete and Rachel had during rehearsal). They showed a montage of clips of Tim and he was indeed a humble guy.

The night was a memorial to Tim's life and it was beautiful, we could only hope someone might respect and honor us enough to do that at our passing.... Laurie included on the front page of the program Tim's passions and a small note of how the night came to fruition:

I was uncertain about what to do with any proceeds from sales of Waves until I received a letter of thanks from a young girl receiving scholarship voice lessons at Community School of the Arts through a donation friends made in Tims honor. Lisa faced a number of challenges in her life, but said she forgot about her troubles when she was singing. I immediately thought of how true this had been for Tim during his years of cancer treatments, and how he continued to work on CD revisions even during his very last hospital stay.

The thought of linking Tims concern for young people with his gifts of musical self-discovery and connection to others just felt right to me.

Thank you all for sharing in this with us, God is truly sovereign!

Today is Lisa's cardiology appt and I claim a good report! We have two other appt later in the day, but will be at the cardiologist for at least 2-3 hours for tests/exams. We also have woodworking for David and both girls have theater.

My Dad's cardiac stress test is this morning as well, He and Mom will go to the hospital near their house without me. It feels strange when I am not there; however, they really didn't need me today.

I know you will be praying for us, Thank you.
__________________



Sunday, October 7, 2012 7:13 AM EST


If you missed Saturday's update click on journal history. Lynn, I explained about David and TT, He LOVES that ride...Dolly, I so agree, we just rolled with the punches. Suzanne, a bad day at Disney is often better than a great day at home. And really, our day wasn't bad (but it IS coming, lol) We LOVE FIGMENT!.

Tonight is a big night for Rachel. When Lisa was in the hospital back in July, Rachel was asked to play in a concert for a local musician who passed away last year from cancer. That is all I knew about the night. She only has one song; however, they are planning on giving her an honorarium for her time (There have been lots of rehearsals with all of the musicians). As she said, she would happily do it for free (she always does). This is exciting because there are LOTS of talented, well-known local musicians playing the venue tonight at the Mcglohon Theater At Spirit Square. Rachel LOVES playing in this theater. There are a few other up and coming young musicians who will also be showcased and they are each playing a song from Tim Lemmond's CD...I am so proud that when they need someone to play guitar at an event, Rachel's name comes up so frequently...and she is always happy to give back. She needs an easily portable amp, we have discovered as she plays more and different places. so the honorarium is her"seed money". I truly am so happy she can share her God-Given talent with so many!

Fast forward to the night she played the fundraiser for Community School of the Arts (CSA) last month. Lisa and I were enjoying listening to Rachel when a beautiful lady came over to introduce herself and ask if I was Rachel's Mom. I said yes and she told me she was the widow of the gentleman we were honoring at the concert in October. You might remember my saying the day after I had a God Story to share... and this is it. Laurie asked me if I knew how the concert came to be and of course, I didn't. Her husband had written and produced a CD of his songs, his second album. He had almost completed it when he died last March, 2011. Laurie, with the help of his friends, put the finishing touches on the CD and it was finally ready for release. They planned to have a release party and she knew the album, while not hugely profitable, would raise funds and she wanted the proceeds to honor Tim; however, wasn't sure how to utilize that money. She said one Sunday night she was going through her mail when she read a Thank You letter from a little girl at CSA who had received scholarship funds for her voice lessons. The letter had truly touched her heart and made her decide that she HAD to use the funds from the sale of the CD to fund a scholarship for children who were in the foster/adoption system, an area that Tim had always supported as his work as a psychologist. This little girl who received the scholarship was NOT in the system; however, she did have her own difficulties. In the Thank You letter, the child shares she had some medical problems and had to see lots of doctors and deal with other challenges; however, when she was singing she forgot all of her troubles. She wrote how much she loved her voice teacher and was so thankful to be able to take voice lessons. As she was talking I got my God chills...it was all to familiar...Laurie said she carries that letter with her every single day and will read it to remind her of what is important in life, it inspires her. When she finished I said to her...And the little girls' name is Lisa. She looked at me in amazement and asked me how I knew. I turned to my beautiful daughter who was sitting beside me on the couch listening to her sister, dancing to the music, and I said, Because THIS is Lisa. Then we were BOTH crying, it was simply amazing...how can you NOT believe in God when this was brought about by a small childs letter of Thanks...and that it had such a profound effect on someone else. The chances of Lisas letter finding its way to Lauries hand was slim...CSA has the scholarship students each write one letter and then they randomly send them out to the benefactors...Lisas letter could have been delivered to any number of donors, and yet it was destined for Laurie...because that letter was the catalyst of this concert and MANY children will benefit because of the funds raised tonight...what an incredible blessing! Tonights concert will be a celebration of Tims life and music and the start of a fabulous scholarship in his honor.

My friend Sandy and her DH had come to hear Rachel play at Bistro La Bon, so while she couldn't hear our conversation, she COULD see the effect it had on us both and it was so special to have her there as well. Thanks Sandy.

I am thrilled both of my daughters have a part in this story.

Here are a few pics of an outfit Lisa put together...Two different friends made the skirt and shirt, doesn't she look adorable? She also did her own hair in pigtails.

I also wanted to share pics of the fun David had Wednesday night on his BD. I blew up the pic of him as Indiana Jones and he loved it, he was laughing so hard he turned red. The last few are of a song Lisa wrote for him and SHE was laughing so hard she could hardly sing/perform it...I love these children, they have so much fun and truly love each other!

Saturday, October 6, 2012 5:28 AM EST

Gosh it has been a LONG time since I posted a MAW trip update...how about some fun!

From DHS, we decided to pop over to Epcot, we LOVE that park and truly enjoy exploring it. We were excited by our decision to visit. We took the obligatory pics in front of Spaceship Earth...the sun was SO bright and hot, it was hard for us to have our eyes open.

Where did we go first....Living with the Land...we do enjoy this ride, although it will never be the same since they did away with the individual tour guides on each boat. We actually had the pleasure on a previous trip to be the last boat to dock with a tour guide. We love all of the sights, the sounds, the smells and what this ride represents. I only posted a few pics. including the Tilapia Tank...I love Tilapia, it is my favorite fish. I won’t bore you with all of my pics from this; however, had to post a few...

We left The Land and went to Soaring, where even with the Green light GAC we waited 50 minutes. They actually kept us waiting through TWO ride rotations because they were having “technical difficulties” and couldn’t accommodate Lisa’s W/C...no one could ever explain what those difficulties were and it truly seemed they were deliberately holding us up, although I have no idea why. We have ridden soaring before WITH Lisa in her W/C and they did exactly as they did when they finally let us in: I transfer her to the ride and they wheel the chair away...it worked this way when we finally boarded as well, so honestly I have NO idea what the holdup could have been. Not wanting to be rude or create a scene, we went with the flow, we were close enough to see the door and knew we MUST be coming up soon! The good news was they put us on the top row, which really is the best way to ride, no body’s feet are hanging in your face. We do LOVE this ride! We left there and went over to ride Nemo. They sent us through the FP lane because of the GAC, although those w/o a GAC walked directly on the ride while we weaved in and out of the turnstiles...all the chains were up, even tough the line was fairly empty. I didn’t understand that either. I enjoyed this ride much better this time around, we rode it when it first opened and were not impressed. I think knowing what to expect made it better for us. Plus, I was happy to sit down, my blisters hurt.

We left the Seas immediately because our wish Princess REALLY wanted to ride Test Track, her FAVORITE ride (that and Splash Mountain, she would do those two rides exclusively if given the opportunity). By this point in Epcot no less than 6 different CM’s had wished Lisa a Happy Birthday...we had no idea why. Maybe it was our buttons?? It was starting to get old by this time. When we arrived at TT they tried to send us through the FP line that had a 65 minute wait. I asked the young lady if that was the correct way for Wish Families and she told me she didn’t realize we were on a Wish trip...in spite of the green light on the GAC, the buttons we were all wearing and the HUGE sign on on Lisa’s W/C that said Lisa’s Make a Wish Trip. I thanked her profusely for her help and we went in the back way, and got on the ride within 10 minutes...They were so nice to us, they let my Princess and family ride TWICE! Here are those photos. Poor David is always worried about his eyes, so he keeps his head fairly rigid: he doesn't want anything to fly into his eyes and he uses his glasses as a safety glass...in spite of the fact he isn’t smiling (he is concentrating) he LOVES this ride as much as we do.

We got off of Test Track and headed directly to World Showcase, we were HUNGRY!

Pete ran to Germany to get two more pretzels, Christian and David headed to the outpost to get two Strawberry drinks (LOVE these...and they only had enough to make ONE so they got that and a coke one..not my fave. I am a diet coke girl). Lisa, Rachel and I got an order of chicken tacos, then we all met in Norway and got school bread and a cream horn to share a sampling between us. It was DELICIOUS!

We were satiated by this point and did a quick ride in both Norway and Mexico. We realized we had time to ride The Land one more time, so we headed back to Future World. At this point in time I realized my blisters were making blisters. I had been fighting the problem all afternoon and Pete kept trying to get me to get a free W/C (a perk of the MAW GAC). I said absolutely not, I am able bodied and could walk, no problem. As we were walking I realized that it would be in my best interest to let them run ahead and ride one last time without me. So that is what they did...I strolled along leisurely and sat down outside to people watch. I am always amazed at how rude people are to those in W/C’s and ECV’s...I know they can be slow and take up more space; however, there really should be an etiquette course as to how to be good guests from both those who walk, as well as those who ride.

It was getting late and Future World was closing, so we headed to Spaceship Earth, because we KNEW they would be open later. We went in and only had a 10 minute wait until they took us on our first glimpse of the updated ride. LOVED it; however, we have always loved it. The children like the new interactive portion (honestly, I can take it or leave it). The children had some fun playing around with the interactive displays and then they wanted to ride again, so we asked, waited about 10 more minutes and rode once more. By that point in time we were exhausted and Lisa could hardly hold her head up.

I will post what I journaled that night. We had been told repeatedly at Epcot by cast members they didn’t realize we were on a Wish Trip (a problem we didn’t encounter at DHS). It seemed that it should be fairly evident by the GAC that the CM’s all looked at when I happily showed it to them. I stopped by Guest Services on our way out to ensure that we were following ALL of the protocols and rules. I wanted to make sure we didn’t do anything wrong or make it tough for Wish Families who came after us...plus, I genuinely do treat others the way I want to be treated.

The Disney Studios, for the majority of our visit was MAGICAL (So much magic and so many pleasant people, you will be amazed!)...Epcot, which I LOVE was not....in fact, I was told that a greenlight (indicating we were Make a Wish) on the front of a guest assistance card did NOT mean front of the line access. That was not my question, but “Harvey” in guest services felt the need to pull out a GAC (Guest Assistance Card) and show me quite clearly that it plainly stated on our GKTW GAC that we did NOT get front of the line access, that each manager at each ride decided how all GAC’s are used in their area and that accommodations were at the whim of the person manning the ride...but I was always welcome to ask for a manager, although we often would have to wait for one to be free to discuss our “problem.” Wish Children are NOT afforded any special accommodations except at character interactions....per Harvey. AFTER the fact, I realized I should have asked for Harvey’s manager, but I was tired and wanted to go home....and was quite surprised my inquiry as to how to ensure a cast member realized we were MAW turned in to that! Lisa is IN her W/C, with her pink GKTW button and a sign that reads Princess Lisa’s Make a Wish Trip in big letters and we ALL 6 have on MAW buttons. Upon approach to the cast members, I immediately show the GAC, with the greenlight (and do it with a huge smile and THANK YOU) and both at Spaceship Earth (10 minute wait~not bad), Soarin (50 minute wait) and test track (NO WAIT, because I pointed out we were MAW and the girl said she didn't realize and sent us an alternate way). At all three rides, I was told they didn’t realize we were MAW. I stopped at Guest Relations to ask if we were doing something incorrectly or if we were following protocol...Harvey told me and I quote “Most of the CM’s have never seen the greenlight, so they treat it the same as on ANY GAC and he didn’t know why I felt we were entitled to more anyway, NOBODY received front of the line access.” BELIEVE ME, I had prefaced the entire conversation with how GRATEFUL we are, just wanted to make sure we were doing things right, I certainly do NOT feel entitled...so when the GAC expires on Wednesday (we have extended our trip past what MAW does for Lisa’s sake), it really will not matter...we are getting the same accommodations as a person with a GAC.

I vowed to NOT let this incident ruin the other magic of our day and we were strongly questioning if we even wanted to return to Epcot later in the week...and it is one of our favorites!

We arrived back at the GKTW Villa and ordered pizza and took baths as we waited for the pizza to FINALLY show up at 10:30...we were hungry! The girls and I each had two slices and I tucked them in bed with dreams of more fun to come...The guys finished off the pizzas while I washed clothes and got things ready for the next day.

I decided from the start of writing our Trip Report I would tell the good, the bad and the ugly and I have. PLEASE don’t think it diminishes what an AMAZING time we had...there is LOTS more magic just ahead; however, we will have another hiccup or two along the way...and Pete and I got smarter by the end of the trip. If we didn’t like what someone told us by golly, we just asked someone else!

Wednesday, October 3, 2012 7:53 PM EST

We have a date for my Dad’s surgery, October 18. It will not be an easy surgery and the doctor made sure Dad understood the road to recovery would be painful and long; however, they are VERY pleased his Pulmonary tests had rebounded per the pulmonologist “astoundingly.” I will not bore you with all of the technical aspects; however, we are VERY pleased he can have this surgery. We will NOT know future treatment options until after the surgery and pathology reports are back. That could include chemo and/or radiation. The plan for surgery is:

Remove as much of the tumor from the pleural wall as possible
Remove the upper lobe of his right lung
Take out all lymph nodes they can find and check for cancer
Remove part of the rib if it is involved at all

We have quite a few pre-op appointments over the next two weeks however, we will continue onward as we have since this odyssey began August 24. Dad has a cardiac stress test on Monday; however, I will not be able to join them. Lisa has her big 4 month cardiology appointment that day and she can’t miss it nor can I reschedule. In the past four years these early fall appointments have always revealed problems that have sent us to Philly, adding huge stress and worry to my already busy life. I NEED this to be the year that doesn’t happen!! My parents need me.

Thank you for all of the wonderful birthday messages for David, they have made him smile. I LOVE that photo of him as Indiana Jones...what a handsome man he is!!

Lisa Z. THANK YOU for our BD cards and gifts, you were so sweet to think of David and I and forgive my delay in letting you know they arrived, I am so behind on EVERYTHING!



Wednesday, October 3, 2012 3:13 AM


Happy Eighteenth Birthday to my Baby Boy! We were playing around and captured this great pic of David, my FAVORITE “Explorer”! (Remember, David is the most active Explorer in our city, a program designed for students ages 14.5 to 21 to discover career opportunities~ He is in Firefighting, Aviation, Engineering and Woodworking posts).

I can’t believe he can now vote, play the lottery, serve on a jury and is considered a legal adult...where does the time go?

This week has been wild and this is just the tip of the iceberg...we have had 8 MD appts. thus far, 2 dental appts, speech, OT, Ballet, Theater class X 2, Guitar, Jazz Ensemble and Woodworking. David injured his thumb Monday night at woodworking, so I am keeping a close eye on it to ensure there isn’t any nerve damage...it scared me to pieces though. Today my Dad sees the vascular surgeon to get his opinion on if my Dad is a candidate for surgery to try and remove any of the cancer. I will bring my parents back to our house for lunch and wait for my Dad’s oncology appt. in the afternoon. I have to leave here just before 7 AM to pick them up on time for the appt. downtown, so I wanted to post this early. Thank you for the continued prayers and happy messages.





Happy Church Anniversary Lynn and Ed!!! Sounds like a YUMMY dinner!!!

Wednesday, September 19, 2012 5:35 PM EST

My Dad has pulmonary primary adenocarcinoma in the pleural lining of his lung. While we “knew” he had cancer, the pulmonologist didn’t realize we hadn’t been told officially and he was just feeding us info as if we knew...we didn’t and some quick questions from me made him realize he had broken the news in a less than ideal way. Dad has a host of scans/tests set up for next Wednesday. Unfortunately I will be out of town and unable to help my parents with the logistics on September 26; however, I will be back long before he needs me take him to the Thoracic surgeon and Oncologist on October 3 (David’s BD) and more tests on October 10, returning to see the pulmonologist October 12. The plan is to let his lungs heal as much as possible, get him in the best health possible to ensure he is strong enough to withstand treatment and go from there. He does have pain from the tumor being in the pleural lining as well as within his lung and Dr. D said it was radiating back to his rib. He told my Dad the pleural pain was a pain that can’t be touched by meds, other than IV torradol. Our best hope is that surgery can be performed to help give him pain relief and hope to remove some of the cancer. I do not want to say anything more at this time, since we have not spoken to the oncologist ot the surgeon. Sometimes I wish I didn’t know so much medical “stuff”. I was upset at first we couldn't get the tests as quickly as I would have liked; however, now I am looking at it as a blessing, it gives him time for his lungs to heal more and get stronger. The doc added one additional medicine to aid in the healing. Thank you for your continued prayers.

While you are praying, Please keep my parent’s pastor in prayer as well. She is having some health issues of her own.

Thank you for being here for us.

Sunday, September 16, 2012 6:55 PM EST

It has been an BUSY weekend with lots of accolades for my daughters. Friday night was the dog show at the County Fair and Bandit and Rachel did amazingly well. The dog show went well and Rachel come home with an armload of ribbons. Lisa led the pooch parade and was adorable as you will see below.

Lisa was honored on Saturday by a organization called Think Alive, that has partnered with Community School of the Arts. This press release was put out in the Spring, although the awards obviously didn’t happen in August, they happened yesterday.

Think Alive to Honor Two Artists with Disabilities in August Ceremony

The Think Alive Team will travel to Charlotte, North Carolina this August to award a total of $1000 in Achievement Grants to two adolescents with special needs.

This award ceremony will be the foundation’s first formal collaboration with Community School of the Arts (CSA), a non-profit cultural education center that has served the Southeast since 1969. Invitees will include parents, instructors, CSA board members, parents, community leaders, and the media.

The Achievement Grants will fully underwrite the cost of the fall semester for two exemplary students with disabilities, who will be selected by both Think Alive and CSA. The partnership seeks to inspire community by supporting these adolescents’ artistic goals, while challenging the perceived barriers between people with and without disabilities.

“This trip has the potential to morph into something much larger,” said Think Alive Executive Director Tim Enfield. “It may result in more presentations, and a partnership to help youth with disabilities in the Charlotte area achieve their dreams for years to come.”

Lisa was chosen to be one of the first recipients and she was SO excited! They planned to do the awards ceremony at an ice cream social. I was teasing her and I said, but you don't even like ice cream though...RIGHT??? She got very serious and said, Mom...don't even JOKE about ice cream...it was funny (you had to be there).

The ice cream social was so much fun! It was held downtown in a venue we had never been to before, right next door to the children’s library/theater. It was a HUGE space, with restaurants inside, a fish/meat market, fruit stands, vegetable stands, a coffee bar and so much more! CSA had set up at one end of the building with a small stage where Rachel’s jazz band director played accordion (He is phenomenal, he can play everything! He was playing a lot of Disney songs (ie: A dream is a wish your heart makes, heigh ho, etc), Bon Jovi, a polka and more. He asked Rachel to join him; however we didn’t have her guitar. I was actually glad though, because this was Lisa’s day to shine. We had DELICIOUS ice cream and visited with lots of folks. There was even a representative from Victory Junction Camp.

We had the pleasure of meeting Tim Enfield, a remarkable young man who hasn’t let cerebral palsy stand in the way of his huge dreams. He is a graduate student who founded Think Alive while he was in college and it is growing by leaps and bounds. “The Think Alive Foundation provides a means...to pursue individual goals and explore passions otherwise inaccessible due to financial limitations”. 

Lisa and another little girl named Ruby, were the first recipients in Charlotte to be honored with this award. It was funny, because they had the girls standing in front of the area as different people spoke and several other children kept coming up to stand with them...we think they thought they were getting the gift bags on the table (eventually each family did, lol). Tim first presented Ruby her award. She is studying piano. Then he presented Lisa’s award. After he had been talking about Lisa for a bit, I saw Lisa ask him if she could speak. Now let me say, only a parent could know that feeling of, uh oh, what is she going to say, this wasn’t planned (Pete told me he felt the same way, lol).  We were taking pics, but not video, I only wish we had! I can’t tell you verbatim what Lisa said; however, she was strong, loud and clear as she Thanked the Think Alive Foundation for her great honor and telling how much she loved singing and being able to take lessons. She was thanking everyone for being there for her at the awards and got choked up as she expressed her feelings. I thought she was going to cry, but not my composed daughter. She choked back her tears (she had them in a few pics) and very eloquently finished her little speech and let me tell you, I was not the only one wiping away tears, it was beautiful! Then Ruby took the microphone from Tim, started to speak, then handed it back to him, she wanted no parts of it. It IS intimidating to speak in front of large groups and people had walked up from all over the venue to hear what was happening...there was a sea of faces staring at them. Lisa surprised us all by her fearlessness and eloquence.

After the presentation I asked Lisa if she would like to sing; however, she told me she thought she would cry if she did. She was so touched by the honor of this award. I had no idea it had impacted her this way. I am getting teary once again thinking about it! I hope you can see the joy on her face, it was priceless!

News about my Dad: He has said he has had some decreased pain since Friday and for that I am thankful. Please keep the prayers coming. Becky’s church (a friend of ours from St. John’s) sent my Dad a Prayer Shawl from her church. You may remember they sent us several back in the winter and we LOVE ours! I hope it brings my Dad some comfort, ours bring us comfort. We have a really big appointment for my Dad with the pulmonologist on Wednesday, praying we finally have some diagnosis so we can start treatment for him. It is a busy week for me: 8 MD appts of our own, therapy appts, regular activities and a surprise on Friday...we need a surprise. Enjoy the pics!

Thursday, September 13, 2012 10:55 AM EST

Dad had his biopsy today and they told us it will take 3 to 4 business days to receive the results. While he was in the procedure I met Christian out front of the hospital and he drove Lisa and I over to her surgeon’s office. She is continuing to have problems with the surgical site. He feels she is having an over production of granulation tissue, which is causing the drainage, bleeding, etc. If it continues, we will have to have more surgery to remove the excess tissue...lovely...

Christian took me back to the hospital. I was only gone for thirty minutes, the surgeon got me in and out quickly for a change...funny how the “C” word softens peoples hearts...more than other illnesses. Most people have had Cancer touch their lives, so it is more relatable. As we were pulling in out front of the hospital, my Mom called to say they had moved Dad to the recovery area. I found them and we sat for the next two hours for his recovery. After a chest x-ray confirmed that Dad didn’t have a collapsed lung, they discharged him. (This was just precautionary).

We went back to their house for lunch, then Dad had an appointment with his oncologist at 3 PM. There are still lots more tests that need to be done to confirm diagnosis of the type of lung cancer my Dad has or if he is even strong enough to survive surgery. The doctor apologized it was taking so long to get all of the information; however until we have everything we need, a plan of treatment can’t be started. I am an optimist and believe in miracles and I need to ask you to pray for that, because after the events of the last two days it is clear that is what we need.


Thursday, September 13, 2012 3:25 AM EST


Wednesday I took my parents to my Dad’s 5 hour Thoracic Clinic at the Oncology Center. We heard the various treatment choices and their recommendations. Dad and Mom both realize what a blessing and correct choice it was for us to attend this Clinic, they learned a lot they said.

Today Dad will have his CT needle guided biopsy this morning and a return to the oncologist this afternoon. If their suspicions are true, my Dad will need a Right lung lobectomy (removal of a lung lobe). They need to do a battery of tests to ensure my Dad is a candidate for surgery.

Lisa also has her 6 week post-op visit today, she still has a hole in her stomach. Wednesday night as I was cleaning the wound I discovered a huge pocket of pus and blood, not good...God bless Christian for all he has done to help me. The surgeons office is planning to fit us in around my Dad’s biopsy and Christian will bring Lisa to me.

The office of the surgeon that we met yesterday called before we even got home to say they have scheduled my Dad’s consult for lung surgery October 3 (David’s Birthday). I wish the date was sooner; however, I have to believe God worked out the timing. They do have a lot of tests to complete to ensure my Dad can withstand the surgery and it will take time to get them done.

Thank you for all of the prayers and notes of encouragement in the guestbook, it IS appreciated!




Tuesday, September 11, 2012 11:25 PM EST

If you want something done, ask a busy person to do it. The more things you do, the more you can do.”  ~Lucille Ball

Have you ever heard that expression? It is true! I have been very busy. My immediate family and my parents understand...and they appreciate me. That is all that matters. Those that don’t understand what the last ten years have been like for my family, well, they just need to say a prayer of Thanksgiving it isn’t happening to them.

We had four MD appointments today, in addition to all of the activities...my children are busy and VERY happy. I am blessed!

Tomorrow I am taking my parents to my Dad’s 4.5 hour Thoracic Clinic at the Oncology Hospital at Presbyterian Hospital. We will hear the various treatment choices and their recommendations. Dad decided Monday he preferred this Clinic over the doctors meeting (without us) at the Thoracic Conference where the doctors would decide what he should do on their own. I am happy my Dad chose this option, face to face meetings with all of the doctors. There is nothing short of an emergency that could keep me away from tomorrow’s appointment, this is very important to my Dad’s recovery.

Thursday we have another early morning, Dad will have his CT needle guided biopsy that morning and a return to the oncologist that afternoon. Lisa also has her 6 week post-op visit, she still has a hole in her stomach, just not as deep. God bless Christian for all he has done to help me. The surgeons office is planning to fit us in around my Dad’s biopsy and Christian will bring Lisa to me. He is still trying to find a job in between helping me...he is the only 22 year old I know who puts his parents and grandparents needs ahead of his own...THAT is the kind of child I am proud to call mine.

Last night Christian took David to woodworking for me, where they worked on a volunteer project of art easels for needy children...My children are very giving, always thinking of others needs. Rachel played the fundraiser for Community School of the Arts (three hours!) to help raise money for their financial need scholarships...Lisa even joined in, clapping along with the music to keep the beat. At one point she took the stage to sing...pictures are below. My dear friend Sandy and her husband Jack come out to support Rachel, what a huge treat for me! There was also a moment of a God Story that happened at the Fundraiser...I hope to share when I am not so tired.

I know you are praying for my family and for my parents. THANK YOU! Enjoy the pics. Pete joined in on many of the songs (as he puts it, it just makes the songs sound “fuller”...he does a great job too, though he likes to point out to me all of his “mistakes”). Rachel was playing with Lenny Federal who is her guitar instructor and a local celebrity. It was a lot of fun last night and they raised a lot of money for CSA. I am so proud of all four of my children! They know what is important in life.

Monday, September 10, 2012 4:36 AM EST

Let's forget about bad stuff and celebrate something fun! Rachel is playing a fundraiser for Community School of the Arts tonight. If you are local, why don't you come out and hear her and Lenny play, it should be fun!

Saturday, September 8, 2012 5:43 AM EST

Let me be clear, we have been told my Dad DOES have lung cancer, he will have another biopsy on Thursday to determine what type.


Friday, September 7, 2012 11:43 PM EST

Emotionally and Physically draining is the only way to describe the past two weeks for my parents, my immediate family, myself. On the plus side at today’s ENT visit, in spite of his best efforts with a fiberoptic laryngoscope, the doctor was unable to see ANY areas on the “voice box” to biopsy, including the polyp. NONE! His explanation was that perhaps my Dad’s neck was turned a certain way that caused the appearance of throat cancer, because he could CLEARLY see the throat swelling and polyp in the photo we brought him from the bronchoscopy...but NOT today! Okay...the PET scan showed hot spots, the pulmonologist saw the laryngeal abnormality very clearly to the point he was able to photograph it, as well as the polyp and expressed great worry after the bronch, my Dad had begun to have some slight hoarseness and pain...per the ENT, there is nothing that needs to be done, my Dad does NOT have throat cancer and we don’t have to come back to see the ENT. Of course, my initial reaction once we were over the happy shock was that prayers were answered! Then I became concerned...was he right? Did these things I VISUALLY saw with my own two eyes and that two other doctors confirm simply vanish?? My Mom and I wondered if we needed to obtain a second opinion to be sure...

I took my parents to the pharmacy to pick up my Mom’s meds and I had FINALLY convinced my Dad to get the pain med filled from the hospital visit two weeks ago (he sounded horrible this AM when I picked him up, labored breathing and in pain. My Mom said he moaned all night, which meant neither of them slept well). His regular pharmacy refused to fill it because it was written two weeks ago...RIDICULOUS! I took him to Wal-greens and they filled it, no problem.

We went back to their house and had lunch and I called the pulmonologist to see if we could get his appointment moved from Monday to this afternoon. They COULD! So I canceled Rachel's MD appointment (this was one I needed to be at) and waited to take my Dad back to the MD at 3:00. We left early to go BACK to the pharmacy to pick up some antibiotics the oncologist called in for my Dad, then we went to sit and wait and wait some more. We finally got back to see the pulmonologist. He told me the ENT that saw my Dad had LOTS of experience (he used to be the chief of ENT at the local medical center) and he felt confident that the ENT was right, there was nothing to biopsy. He really had NO explanation as to WHY what he saw on Tuesday wasn’t present today...but you know what, I am HAPPY beyond belief!! I honestly feel the only explanation is answered prayer!

So what is next? The pulmonary function tests showed some decreased lung capacity and asthma, so he has been started on a daily inhaler and a rescue inhaler. I think that might help with some of his pain, fatigue, shortness of breath and I KNOW it will help him breathe better! They have also scheduled him for a CT needle biopsy of his lung nodule on September 13, to determine if his lung cancer is squamous cell vs adenocarcinoma. It makes a difference in how they treat it. You might remember that is also the day the oncologist needs to present my Dad to the Thoracic Conference (Tumor Board). It was almost 5, so I will have to wait until Monday to see if the Oncologist can help me get the biopsy scheduled earlier in the week.

I took my very tired parents home, made sure my Dad could work his inhalers and drove home to my family getting there a little after 6. Christian was such a HUGE help, I had been gone since shortly after 8 this am. He made sure the younger three worked on their schoolwork and took David and Lisa to their hematology appts. He also had dinner on the table when I came in. We didn’t have any meat in the house, but he had made some delicious noodles, corn, salad and mixed fruit...and it was so nice to NOT have to worry what to feed everybody. What a HUGE blessing it has been to be able to help my parents; my children and husband have been so supportive, they epitomize what family should do, viewing their sacrifices as labors of love.

NO THROAT CANCER! That is HUGE!! And UNBELIEVABLE...but I ALWAYS BELIEVE!!! Thank you for helping pray for this miracle...let’s keep it going! This IS the place for miracles, no doubt! Praise to God for all of the answered prayer! God is GOOD!

Wednesday, September 5, 2012 6:09 PM EST

Lets talk about the good news from today’s appointment first. The PET scan did NOT show any hot spots on the rib (I am positive, I asked for a hard copy of the report and read it myself). The oncologist didn't even know about the rib problem Dr. D told us about until I told him, because it wasn’t in the report. His thought was that while doing the bronch under fluoroscopy, Dr. D saw the abnormality to the rib. The Oncologist said he wasn’t even going to worry about it at this point in time since it didn’t show on the PET and we would move forward as if there were no bone involvement.

He already had Dad an appointment with the ENT set up for 9/11 in the late afternoon. I asked him if there wasn’t something we could do to speed up the appointment time, so he went and personally made the call himself. We now see the ENT early morning on 9/7...which is GREAT news because that gives them more time to get the info back before next week when the Oncologist will present my Dad’s case to the Tumor Board at Thoracic Conference...The other option was to meet ourselves with the Thoracic Clinic, where we would make the rounds ourselves with the Surgeon, Oncologist, Radiologist etc, ourselves. This one would have allowed us to ask questions and be more involved/hands on in my Dad’s choices for treatment, etc. This of course was MY option, it is right down my alley and what I did for a lot of years as a nurse. I like options/choices. I am NOT the patient though and as I told my Dad, this is HIS journey. He needed to make the decision what we do...in all things. I truly appreciate the fact he WOULD have done the Clinic for me, but he would have been worried and miserable the entire time. HIs choice was to do the conference with ME present..they weren’t going for it. The next available conference was September 13, the next Clinic was the 19th...so Dad went with the Conference (doctor’s only). We will see the Oncologist the afternoon of September 13, for treatment options.

It APPEARS that Dad has a malignant tumor of the lung, per the PET scan and hoped to be confirmed by the lung biopsy (which MIGHT come back negative since they had trouble accessing the tumor Tuesday). It also is highly suspicious that my Dad has larynx (throat) cancer. The hope is, that if he DOES have the misfortune to have TWO types of cancer that thy are both primary sites and NOT that the Throat cancer has metastasized to the lung. Two primary sites would give him a MUCH better curative rate. Of course I could sit here all day and ramble on about what the doctor said, but the BEST news I took from the appointment was that it does NOT appear to have metastasized to the bone (the spots on his back did NOT heat up either). I am clinging to that answered prayer, because it IS answered prayer! Yesterday things looked bleak and I actually cried after Dr. D talked to us as we sat in the recovery room waiting on my Dad to wake up (sometimes too much knowledge is scary). As the Oncologist said, in spite of his age, my Dad is in pretty good health! And hopefully we will get the rest of the tests done Friday (I sure pray so).

Christian is going to take Lisa to her hematology appointment for me. As I help my parents, he helps his. What a blessing he is and how thankful he HASN’T found a job yet. My parents are thankful for me and I am thankful for him!

Tuesday, September 4, 2012 6:48 PM EST

The bronchoscopy took twice as long as expected and recovery was four times longer than anticipated. Dr. D received the results of the PET scan prior to gong in and knew my Dad had “hot spots’ in his throat, 2 in his lungs and one on his rib. He was very concerned. Multiple biopsies were performed, due to the spots being diffuse and difficult to reach. Dr. D is very concerned by the appearance of my Dad’s throat, the abnormality of the larynx, the polyp he saw. As he put it, he is a man who knows his limitations and wasn’t about to try and biopsy the throat and cause hemorrhaging. We see the oncologist tomorrow, Dr. D said Dad needs to get in to an ENT ASAP and have this biopsied, the quicker the better. His fear is, it started in the throat and spread to the lung and rib. I pray he is wrong on all counts. I didn't get home until just now. My fabulous children? Christian got everyone where they needed to be, with help from all of his siblings. Now we all need another miracle, please pray the diagnosis for my Dad will be swift and that the fears for him are unfounded and WRONG! We see the oncologist tomorrow to get the results that ARE in and find out when we see the ENT.

Friday, August 31, 2012 3:41 AM EST

Took my Dad and Mom to his Pulmonology appointment Thursday afternoon after a pretty busy morning for us. Dr. D was actually my MD and did a bronchoscopy on me 27 years ago. He has a strange sense of humor and got along fine with my Dad. He noticed some breathing difficulties in addition to the spot on his lung. He told us spots on the lung were 80 percent malignant. They managed to get us in that evening for my Dad to have some pulmonary function tests. The technician who did Dad's tests actually used to work at the center where my Mom used to take her pulmonary rehab...small world. Dad will have his PET scan tonight and his bronchoscopy on Tuesday. Thank you for your prayers!

Also, Thank you for the warm and kind words of praise for David's stool. It made him feel good.





Thursday, August 30, 2012 2:41 AM EST


I want to Thank you all for your continued prayers and kind messages.

Prayers continue for you all!

I could say a lot, but I am tired. Instead I will post pics of the birthday gift David made Rachel. It is an absolutely GORGEOUS guitar stool, with a place to hold her guitar when she isn't performing. I TRULY DO appreciate your all being here, you make me smile. So sorry I haven't been able to respond to all of the emails individually.
And activities have begun starting back so it is a nutso week. MD appts for the children: 8, therapy appts: 4, MD/scan appts for my Dad: 3, New semester of activities starting back thus far: 4.

And it is only going to get busier...

MELISSA!!! Thank you for stopping by, I can't wait to show Lisa and Rachel you were here. Melissa has been an art intern this summer at the hem-onc clinic and has helped Lisa pass the time each and every Wednesday with a new art project...she even came to do art with her while Lisa was in the hospital. Lisa was so sad yesterday was her last day and she made her a Dolphin out of clay so she wouldn't forget her. We will miss her smiling face each Wednesday, THANK YOU MELISSA for all you have done for us!!!

---

Monday, August 27, 2012 5:14 PM EST

We saw the oncologist today for my Dad. He has a 2 cm (relatively small) tumor on his right lung that is “probably cancer”. He sees the pulmonologist on Thursday, August 30 for an initial visit and to set up a bronchoscopy with biopsy. The oncologist hopes the pulmonologist will be able to do the bronchoscopy on Monday or Tuesday next week. Dad is also scheduled for a PET scan Friday night. They drew more blood today for tumor markers. We return next Wednesday to the Oncologist and he hopes to have “most of the results by then” so we can set up a plan of treatment. The CT scan did show some sclerotic areas in the spine that “could be metastasis, but hopefully is a result of old scarring from back problems”. There were a few other things the doctor wants to check out; however, he said first thing is first. He needs more information to “do the staging and prescribe a plan of treatment.” Best case scenario, there will be NO metastasis, which would complicate things. We are VERY grateful things are moving so swiftly. The quicker surgery occurs and treatment starts the better the prognosis.

---

Sunday, August 26, 2012 7:15 PM EST

If you missed the pics/story about Christian's car, click on journal history.

I am asking for more prayers today, this time on behalf of my Dad. He hasn't looked well to me for months and my begging for him to go to a doctor has fallen on deaf ears. He finally was in so much pain Friday he acquiesced to go to the hospital. They ran some tests, then sent him back home Friday night, where he is resting and in pain. Yes, I am quite concerned: On a Friday night after 7 PM the ER doctor managed to make him an appointment with an oncologist for Monday at lunchtime. There is a spot on his right lung that they can't say "if it is cancerous or not." I am not a fool and did oncology nursing for a long time. Somebody pulled some favors for this appointment to be arranged so quickly. I am fortunate that I can take them Monday and hear what is said and my Dad actually wants me to be there. So does my Mom and I am glad. I know you will rally the prayers for him. My Mom gave me permission to post this on the caringbridge site tonight.

We have quite a lot going on this week: ballet and voice lessons start back for Lisa and Rachel's new semester of guitar begins. She played this afternoon at The Comet Grill with Lenny Federal and his band, for a benefit for Holy Angels. She was actually stopped by several people because they recognized her from youtube...how cool is that?!? I also need to post pics of David's latest woodworking project, he starts a new one tomorrow night.

---

Thursday, August 23, 2012 7:03 PM CDT

It has been an insane August...Lisa is improving slowly, she still has an open wound in her belly. We had friends in this past weekend and I am still trying to catch up. Christian's MRI was not any better and they want him to see a psychoneurologist for evaluation. He will see the neuro in October and they want to do a repeat MRI.

He and I flew to New York August 10 to meet a friend of mine. (Our first time in NY). I needed to finalize a few things and we had out of town company last week and I am STILL playing catch-up (okay, when am I not).

A dear, incredible friend of ours had not driven her car since 2010 for a variety of reasons, primarily health. She was considering donating it and then decided, who could need it more than CHRISTIAN! Only stipulation was that we had to make our way to NY to get it back home. This all happened just before Lisa went in the hospital for surgery. Pete and I bought airline tickets for his birthday and Christian and I were looking forward to spending some time together just the two of us. Our flight was delayed and we got into NY where our friend had a car service waiting to pick us up and take us to her home in Brooklyn...where she ALSO had dinner delivered to us at 1 AM! Only in NY!!! We talked until the wee hours of the morning and then fell asleep. The next day we went over the paperwork and then did some sightseeing (think whirlwind tour). We saw Times Square, Ground Zero, the new Freedom Tower, Fake characters like Elmo and Woody, The Statue of Liberty and so much more! They took us to a famous Doughnut Shop called Doughnut Plant as well as to a restaurant for some Sicilian pizza that was yummy from a place I can’t think of at the moment. Christian and I were sad because we had to hit the road, it was 6 PM and I was worried about getting across the bridge and through Staten Island...I shouldn’t have worried, it was quite easy. Once we were on the open road, we had Pete call his Mom to see if we could stop by (she had NO idea we were in NY). She had prior plans; however, when we called Pete's sister, she said come on over and we could even spend the night. We arrived after 10 and went out to get a bite to eat, returning at 1 AM...I was beginning to think I was back in college with such late nights! We LOVED staying at Susan's, another first! THANK YOU SUSAN, we loved showing the car to you first!

We had a great visit; albeit too short and finally got under way around 4 PM, after a late lunch at Red Robin (sounds like all we did on this trip was drive and eat....seems about right, lol). We drove for about 3.5 hours and I was wiped out, so we stopped in Daleville, Virginia and spent the night at a BEAUTIFUL Super 8 (seriously, they had just remodeled)! I had gotten a coupon at a rest stop for $48.95 and with tax the total was under $54! It would have been $75 without the coupon. My sweet friend who gave us the car had given us some cash towards gas/food/lodging...so we took advantage of some rest and a little more time together! We were on the road before 9 am the next morning and arrived in Charlotte, taking the car directly to our mechanic, whom we trust (hmm, could it be my favorite Toyota mechanic)? The car had been sitting for over 20 months and we needed to get it inspected. They were busy; and we had to wait awhile (remember, we just called that AM). They changed the oil; however, the right window mirror was broken and the rear upper brake lights were also not working, so they needed to replace them to pass inspection. They had to order the parts, so after they finished the oil change, and topping off the fluids for us, we headed HOME!

I didn't want to post about the car until everything was taken care of, I am funny like that. I wanted the car fixed, registered and in Christian's name before I shared...we got the call Tuesday while we were out that they would have the parts late Tuesday evening, so Christian drove it up to the mechanics to leave for the night. While we were at the hematologist Wednesday, Christian called to say they had the car repaired, inspected and ready for pick-up! After forgetting THREE separate things we needed and having to drive back to the house (we never made it far down the road before we realized it....everybody at home was laughing at us...we finally made it to the DMV and went directly to the counter, NO wait! That never happens! I was SO nervous; however, within 10 minutes the title was transferred, new tag issued and fees paid...the car was OFFICIALLY Christian's! We came outside, so ecstatic and elated, jumping up and down and hugging!! We immediately called my friend and told her the car was out of her name and belonged to Christian!! We are SO incredibly Thankful and Grateful! It will help getting Christian back and forth to his job interviews, he can run errands for me and just have some freedom he hasn't been able to enjoy...what a true gift!

Oh, nearly forgot to tell you about Mr. Morrow...he is a 2000 Blackberry colored Saturn SL1, 4 door sedan...get the name (yes, my friend loves Disney too and the name is a tribute to the peoplemover)!! After our trip back to N.C. he has just under 63,000 miles!! We had to put some money into it; however, far less than if we had purchased a car. We are so incredibly BLESSED!!!!

---

Sunday, August 19, 2012 9:37 PM EST

I wanted you to know we ARE fine, LOTS going on. THANK YOU for always checking on us and letting us know you have been by. I will try to get to an update soon to fill you in.

---

Saturday, August 4, 2012 6:12 AM EST

Good morning everyone!! Thank you for all of the wonderful Birthday wishes for Christian! Our day was so incredibly busy yesterday, that he decided he wanted to wait until today to open his presents and cards...to be honest, that worried me...there was time for a present...

His MRI was... strange. We arrived for his 2:30 appt. and there was ONE car in the parking lot that is always overflowing. Eerie (we found out the neurology office closes at noon on Friday, but they still do MRI's)...we walked in to the check in to find one person instead of five...I told the guy we were there for an MRI with and without contrast, we checked in and sat down and a tech came out to get him and said there would be no contrast, just a very in-depth MRI....and there was NO ONE for me to confirm this with...I asked him three times if he was sure...Christian’s first MRI took about 20 minutes, his second 25...this one lasted 45 minutes...I am praying they got what they needed because I need answers! His follow-up appointment is August 15.

My friend, Betty, is taking us ALL out to dinner tonight...we are excited on one hand (we rarely go out to restaurants) but so sad on the other, she is moving to a different state. She has been here for me through some very difficult days and I will miss her more than I can ever express. It can be difficult to stay in contact with friends when you have as many health issues as we have and people get tired and fed up when you can't always join in. She has always understood, and NEVER abandoned me, no matter what. Her husband was the first person we met when we brought our little family (Rachel was a month old) to a new church on July 4 weekend, 1998. Just this past week someone was trying to bully me into doing something that wasn’t good for our family (specifically Lisa) so they could “give us something”...and if we didn’t drive two hours round trip to “get our gift” then they weren’t going to give it to us, because “it wasn’t fair for those who were giving if they couldn’t watch us receive it”...Pete and I both agreed they needed to give back what they had collected (without our knowledge) on our behalf, we weren’t for sale or display. Lisa and ALL of our children will always come first. Gifts with strings aren’t gifts.

Ginger, there was no need to put Lisa in the hospital. Thankfully all of the care she needs I can provide at home thus far...I pray that continues! What she needs is time...to discover if she is still leaking from her stomach, if she has a seroma that will eventually resolve, or if she has dehisced, which will have to slowly heal before they could repair the inevitable hernia.

I hope you all have a beautiful weekend full of fun...and maybe a miracle. I claim mine!



Friday, August 3, 2012 3:12 AM EST


I THINK I have everybody on the new list now. I am going to send out my new notification and HOPE the bravenet will allow me to send the old one out as well. If you don’t get the new notification and want to (or if I have the wrong email address), please tell me!

Today is Christian’s birthday!!! I can’t believe my little guy has grown up into such a tall, handsome fellow full of life and love. He is the kindest person his age that I know. HIs compassion for others (especially his baby sister) never fails to amaze me. I am so blessed to be able to call him my son. My parents are coming over for lunch to celebrate with us before his MRI, and tonight we are going to a cookout party with friends (Praying for no rain)!!!

LIsa is still leaking; however, the more she leaks the less swollen her tummy is and the better she feels. THAT worries me that her stomach really is still leaking. The wound is slightly larger at 2 inches, by, 3/4 inches by 1/2 inch deep...I see some pink tissue trying to form, just don’t like the look of some of the edges. I told the nurse yesterday it looks as if she would if she had been riding a bike and fell on a stick that hit her abdomen and gouged out a hole.

Ginger, not leaving you hanging intentionally. The three options I stated are PROBABLY what is going on. The first problem would require surgery, the second will eventually resolve, the third will require a hernia repair at a later date...so we wait. It will delay recovery time for all options obviously.

Lynn, I called yesterday and told them in addition to the MS they are looking for to specifically look for a pattern of rabies. If the progression is as rapid as they led us to believe Monday it would point towards rabies more than MS. IF it is rabies he would need immediate treatment to save his life. I just don’t want to even go here in my mind, so I will not speculate further and just wait for today to happen. One thing we have learned in the past two months is that rabies can lie dormant in your body for YEARS. You CAN be bitten by a bat and never know it. And they do NOT test you for rabies when they give you the vaccines.

SO, once again to happier things. THANK YOU ALL for the great messages of support and prayers! We need them more than ever.

Happy Birthday Christian!!! Thank you for being such an amazing son!!!

---

Friday, August 3, 2012 3:12 AM EST

I THINK I have everybody on the new list now. I am going to send out my new notification and HOPE the bravenet will allow me to send the old one out as well. If you don’t get the new notification and want to (or if I have the wrong email address), please tell me!

Today is Christian’s birthday!!! I can’t believe my little guy has grown up into such a tall, handsome fellow full of life and love. He is the kindest person his age that I know. HIs compassion for others (especially his baby sister) never fails to amaze me. I am so blessed to be able to call him my son. My parents are coming over for lunch to celebrate with us before his MRI, and tonight we are going to a cookout party with friends (Praying for no rain)!!!

LIsa is still leaking; however, the more she leaks the less swollen her tummy is and the better she feels. THAT worries me that her stomach really is still leaking. The wound is slightly larger at 2 inches, by, 3/4 inches by 1/2 inch deep...I see some pink tissue trying to form, just don’t like the look of some of the edges. I told the nurse yesterday it looks as if she would if she had been riding a bike and fell on a stick that hit her abdomen and gouged out a hole.

Ginger, not leaving you hanging intentionally. The three options I stated are PROBABLY what is going on. The first problem would require surgery, the second will eventually resolve, the third will require a hernia repair at a later date...so we wait. It will delay recovery time for all options obviously.

Lynn, I called yesterday and told them in addition to the MS they are looking for to specifically look for a pattern of rabies. If the progression is as rapid as they led us to believe Monday it would point towards rabies more than MS. IF it is rabies he would need immediate treatment to save his life. I just don’t want to even go here in my mind, so I will not speculate further and just wait for today to happen. One thing we have learned in the past two months is that rabies can lie dormant in your body for YEARS. You CAN be bitten by a bat and never know it. And they do NOT test you for rabies when they give you the vaccines.

SO, once again to happier things. THANK YOU ALL for the great messages of support and prayers! We need them more than ever.

Happy Birthday Christian!!! Thank you for being such an amazing son!!!

---

Thursday, August 2, 2012 3:15 AM EST

The past two days have been insane! Christian had his neruo-opthalmology appointment and while we are thankful he doesn’t have any optic signs of MS currently, it is possible for that symptom to come and go...or be completely non-existent. Based on our family’s history, that does not surprise me in the least. He had his sleep-deprived EEG yesterday as well, we will receive those results August 15. He and I were up from 3 AM onward. He will have a THIRD MRI on Friday. I was discussing him with our hematologist yesterday during Lisa’s appointment (her INR was 1.5...NOT good, although in view of what I am about to tell you it was a blessing)! DR. B told me to tell them to look at the MRI and see if it could be rabies...we don‘t know how long the bats have been here and she said it IS a possibility, so scary! She sat with me a long time talking and discussing things with me and I felt so much better. There is nothing like having a spiritual, Christian Believer caring for your children. I will not go beyond that, it was an amazing conversation though! I DID feel unburdened at the conclusion and remembered all of the miracles God has given us. God HAS promised me specific things for my children and I BELIEVE, I really do!

Before we could go to the EEG on Wednesday, we had to go to the surgeons office (Lisa’s doc was off, of course). On July 31, she began to bleed from her wound site. A LOT! She soaked through three dressing sponges in less than 10 minutes initially. She either is still leaking gastric content (This would be the worst news), has a seroma (a pocket inside the incision that holds blood and fluid and will eventually resolve) or the wound has dehisced (The layers of tissue and muscle under the skin that were sutured closed may have opened up). Both a seroma and a wound dehiscence will eventually heal on its own. A seroma should not have a long term effect, the dehiscence will cause a hernia that will need to be repaired after she heals...not a good option! She is enduring multiple wet to dry dressing changes daily, is on an antibiotic (there is great fear of wound infection due to her artificial heart valve). Through it all she NEVER complains and has had nothing for pain since the recovery room except extra-strength Tylenol...TOUGH is what my little lady is!

I could go on; however, I think you get the drift. Once again, if I wasn’t living it I couldn’t believe it. Special thanks to my parents for giving me a hand on Tuesday! We are repaying the favor by keeping their male dog, Axel while Squeaky has some alone time with them, if you get my drift. He is a noisy little thing when he isn’t getting his way (cries/yelps/screams a LOT) but is so sweet and docile when he is with you. He is adorable and it is so cute to see him and Bandit together, like brothers. (He really belongs to my brother; however, my parents care for him. We are keeping him for them to have a reprieve, lol. The children would like to share joint custody). Rachel and I drove over and picked him up Tuesday afternoon after her MD appt. and before David got out of the museum. Axel was a good diversion for the older three while I dealt with Lisa’s wound. Her small hole is now a wound approximately 1 1/2 inch long, 1/2 inch wide and 1/3 inch deep...and is leaking now more than ever!

Let me know if you still need to be added to the Caringbridge Notification list for when I update. Leave a guestbook entry with your email please or email me if you do want to be added.

---

Tuesday, July 31, 2012 5:26 AM EST

Christian has a neuro-opthalmolgy appointment today that I was fortunate to get to see if they see any signs of neuritis or other less than normal visual changes. I asked my parents to come watch Lisa and Rachel, Lisa is in no shape to ride an hour and sit in an MD office and David is working out at the Museum (Papa is taking him). Then it will be dash back home and get Rachel for HER MD appt. right across the street! I can't take them both to the AM appt, because Christian needs to watch Lisa. Prayers will continue for us I know. Thank you!




Monday, July 30, 2012 5:26 PM EST


Quick post to say they will be doing Christian's third MRI on Friday (Christian's BD). They wanted to do it Wednesday; however, they will not do an EEG and an MRI on the same day. Thursday is the only day they DON’T perform MRI’s. They could have done it on Sunday; however, Christian prefers to get it over with and I don’t blame him.

Lisa’s stomach is quite swollen still. Her surgeon doesn't want to remove the dressing until NEXT Tuesday if possible, he has xeroform gauze packed inside and wants it to heal. I have to measure her and make sure she doesn’t get any larger in the belly.


Monday, July 30, 2012 4:06 AM EST

That is really strange Lynn. Thanks for letting me know. The update I posted yesterday has completely disappeared! Let me try it again!

Thank you everyone for your prayers and kind messages of support, letting me know you are reading along and for being understanding.

Lisa is had quite a lot of pain yesterday and still can't walk straight. She had her first real bath in a week and that is another blessing of the tegaderm dressing . They placed a waterproof dressing that is not to be removed. Five months of draining and so much more have taken a toll on her tiny body.

Sunday was the anniversary of Pete's Dad going to heaven. I pictured a party, with Dad wearing ""deely bobbers"", as he did at Christian's HS graduation party...

Thank you to those who have been here to support us through this and realize how tough each day (sometimes each HOUR of each day) can be.


We LOVE this picture of Pumpaw...we miss him more than anyone knows.

---

Saturday, July 28, 2012 4:24 PM EST

WE ARE HOME!!!! Praise God!!!!



Saturday, July 28, 2012 3:42 AM EST

Check journal history for anything you may have missed.

Christian and I both called the neurologist office Friday. They have started him on some medication based on his labs. As for the MRI...I am still upset they left so many messages on the ans. machine about this third MRI. The first MRI was w/o contrast the second was with contrast. All they said on the machine was their radiology doctor wanted Christian to have “another MRI so that he could compare the white matter lesions more thoroughly”. Christian doesn’t get what that means; however, I certainly do. Thursday night with a raging H/A bordering on a migraine (I never like to call them migraines, I have seen true migraines in my children, not pretty) hearing all of those messages getting more intense truly scared me. Two of the three calls form the pediatrician was in reference to getting this MRI. SOOO, Christian called as soon as he arrived at the hospital on Friday, first to the clinical nurse about his labs and then to the Radiology department, leaving permission for them to discuss his care with me (such a nuisance, he even signed papers that they could speak to me; however, that is always a difficult point once they reach the age of 18). Neither of us left the room at the same time so that we could answer the call when it came in. I called back after lunch and then again around three and leaving two more messages. When Pete got home last night, he discovered they had called and left ANOTHER message on our answering machine, because when they called the hospital the line was busy....my friend had called to check on things and that is the one time they called...even though I was quite clear on the phone message I would NOT be home, because LIsa was in the hospital...NO ONE listens to me! So NOW we have to wait until Monday! And that IS frustrating!

I am wracking my brian to remember what else I had to share and I am drawing a blank. I will say that Rachel had a great concert I was told by Pete and Christian. I hated I missed it; however, the A/C was out at the school where they were having the camp (seems to be a recurring theme in this horrible heat we are having) and Pete said it was miserable...so while I LOVE to hear Rachel I am NOT sorry I missed the heat and all of those people crammed in to one place! On a positive note, Rachel was invited to do something in the not too distant future (I will share closer to time) and she is VERY excited!! That was a high point Friday!

There is more; however, I don’t know what? I also wanted to share a video that was shot back in March when LIsa was in-patient. I just received the link. While I am not happy I have a brief spot in the video, I think LIsa looks beautiful! The hospital has a program called “Glamour Girls” and Johnson and Johnson (yes, the company) filmed and produced this video...the morning they filmed we had a 5 minute warning and wouldn’t you know I didn’t do my hair or put on make-up that day??? Oh well, it wasn’t about me, it was about Lisa and a few other little girls (the glamour girls are teenagers)...so I hope you enjoy! LIsa has been saying she wanted to film a commercial (remember, she wants to be famous!). I told her this was IT...even though she has actually been on several videos for the Kiwanis and the hospital this one was “advertising” the glamour girls!

Copy and Paste the Link if you want to see Lisa’s “commercial”. http://youtu.be/8KKmdHqx-Vk

---

Thursday, July 26, 2012 11:06 PM EST

The surgeon was in while the Hem-Onc Nurse Practitioner was in. He didn’t even want to look at the bandage on Lisa’s tummy! He asked if they were Discharging us today and his nurse, PA and myself ALL tried to explain WHY she can’t go home, it had nothing to do with the operative site and everything to do with her blood levels...clueless! She needs an INR of 2.0 and today she was 1.2. He never did look at the wound even AFTER I asked, although the Hem-Onc did...and she helped me decide the best plan of care if the waterproof dressing came off...he said to keep reinforcing it and NOT remove it...hello, it CAN fall off if it keeps draining! If this all sounds confusing it is because THAT is how he described things! To the best of ALL of our understanding the surgeon DID close the actual stomach completely, as well as most of the surrounding tissue and muscles, leaving some of them that are superficial and to the outside open to continue to drain from the inside out. Clear as mud, right??? As long as it works, I will be happy.

My parents surprised us again and came to visit for a short time this morning. It helped break up the monotony of the day.

Pete stayed with Lisa at the hospital tonight because I had a ferocious headache I am certain brought on by the heat. We have THREE fans in the room now and it is helping...as much as it can anyway. It is still 87 degrees outside right now. I spoke to Lisa as soon as I got home and she was playing with a little present I had left her. She had her pain meds and was relaxing before going to sleep. She is so used to pain that it has to be really bad before she admits she needs anything. I will go back at 6:00 in the morning, so she will hardly know I wasn’t there all night.

I came home to some very worrisome phone messages. it wasn’t just the messages themselves and what they said, it was the sheer volume of them from Christian's Neurology office and the Pediatrician’s office over the past two days. They both wanted to share Christian's results from his labs...typically ONE call to tell me there are results is all you receive,,,unless there is a problem. Add to that several of the calls are in reference to Christian's MRI, the white matter spotting and the fact they want to do a THIRD MRI...SERIOUSLY??? At 10:30 at night I have no way of knowing what is going on and can only speculate...WHY do we need a third MRI and WHO is supposed to pay for it??? And WHY the numerous phone calls?

All I can do at this point is ask for your prayers and try to get some rest. My princess needs me tomorrow.

---

Wednesday, July 25, 2012 4:14 PM EST

Surgery could not have gone better. it was rather quick, although Lisa did have significant pain in the Recovery Room. We got back to the room and settled and the IV morphine was still in her system because she was a bit loopy. She actually did an art project with the art therapist shortly after returning to the room (they made a small ring). That is when Lisa began to feel VERY nauseated. She had zofran already in her system, so she couldn’t have anything but phenergan at that point. It hit me that it was probably related more to her reflux than her surgery, since she had the cadillac of nausea meds in her system. I got her to eat some jello, then crackers and it settled her stomach so that she could have lunch. She had some Tylenol for pain and once Rachel arrived from Jazz Camp we took a LONG walk! Rachel had promised to take her down to see the birds at the end of the hall when she arrived today and that was something LIsa was looking forward to. I am pleased how well she is doing. It hurts her to laugh though, which is hard because she laughs a lot..she is a happy child!

Lisa has had considerable drainage under her bandage; however, it isn’t TOO bloody so they will allow her to resume her coumadin tonight, remaining on the heparin until she is therapeutic. It is now a waiting game to get her therapeutic on her coumadin. The doctor told us he was unable to close her stomach completely leaving a small hole. That is because this was a contaminated or “dirty” wound. I was slightly upset when I heard this, to be honest...never was that even mentioned and you may all remember that the last surgery was supposed to continue closing on its own as well. I DO believe this is it for her leaking though, it HAS to be and we have been blessed with a good hospital admission. We are thankful. I will not even complain about the A/C being broken, as long as Lisa is improving!




Wednesday, July 25, 2012 4:12 AM EST



It is SO hot in here it will be good to get out of the room for a bit. There is NO excuse for a hospital to be without air...our saving grace is that there is some air exchange in the hallway, so we can get a bit of cool air if we can stand the noise. Lisa is asleep though and we would like her to stay that way, so the door is closed.

They came in to tell us that they will come back at 6 to get her vitals and do last minute preparations. They are supposed to transport us to the OR at 6:15. Thanks for checking on us.



Wednesday, July 25, 2012 2:48 AM EST

Thank you for the warm wishes everyone. They just drew Lisa's labs early t ensure her heparin level is still therapeutic in anticipation of stopping the heparin at 3:30. There is always a flurry of activity while on heparin and most of the nurses are clueless to the protocol because few children receive heparin. I always have to ask a million questions to make sure things are done properly....But I will not complain as long as they treat my sweetie well and so far they are!

I so agree about not sleeping at the hospital, especially the night before a surgery. That is why I need to try and take a nap during the day, but there are always tons of interruptions...day and night. Right now I am listening to doors slamming in the hallway.

The A/C dilemma. I told them mid-afternoon MONDAY it was sweltering n our room and they brought a fan to cool things off while they waited for the newly calibrated thermostat to regulate. I started complaining yesterday AM about 10 AM it was getting hotter by the minute and they said it was just because it was hot outside and it would "catch up". Then at noon when I was still complaining they sent someone to recalibrate the thermostat. At one I kept complaining, as did the nurse. By three we found out they had called a HVAC company and they were "coming out". That is when I found out the entire wing was without air because I wanted to move our room (and I HATE switching rooms). They did bring us another fan at that point; however, I am worried about Lisa getting sick and the air quality...I seem to have a trail of broken A/C's wherever I am...have you noticed?

Thankfully my sweetie is sleeping well tonight and if all goes as planned in a few short hours her gastrocutaneous fistula will be gone and she will no longer leak after FIVE long months!!! Praise the Lord! Please kepe the prayers coming!


Tuesday, July 24, 2012 10:03 PM EST

This has been a very busy, LONG day. Everything is a go for tomorrow morning. IV fluids start at midnight. They will stop Lisa’s heparin at 3:30 and draw labs to ensure she is still within therapeutic range. They should come to get her between 6 and 6:30 AM tomorrow. Lisa had one moment of fear/tears today when she saw the nurse anesthetist and I made the lady come out in the hall with me to discuss her.

We had a pleasant surprise visit from my parents this morning and they came with a bag of goodies to keep her occupied. Christian stayed with us all day and Rachel joined us after camp. Pete came after work, we are both spending tonight at the hospital. We have had some great staff and only a few not so great. That is a blessing.

The ENTIRE wing Lisa is on has no A/C. I asked to have it fixed yesterday but today it became so unbearable they called in a HVAC person...I had no idea they wouldn’t have one on staff... We have two fans going and it is still 80 degrees in here. At least I don't have to pay directly for this one. Hugs you get yours fixed for GOOD!

Thank you for the continued messages and prayers, they ARE working. Lisa told me a few minutes ago that while she had been afraid, she wasn’t anymore. Praise God!



Monday, July 23, 2012 9:29 PM EST

Just a quick update to say today has been a relatively good day in spite of the fact they kept us waiting over four hours before they even started her IV and missed her twice...which meant a total of 4 pokes (as usual Lisa has two IV's). Their centrifuge machine in the lab was giving them problems, so her labs were late which means she is no where near therapeutic since they didn't start the heparin until 6:30 PM. In spite of that it was STILL a better day than the entire stay in May. She had visits from TWO therapy dogs (very unusual) and the one named Gator's owner fell in love with Lisa and told her she would bring him back Thursday night especially to see her!!! So Lisa has something to look forward to. Gator's owner is a Veterinarian. I love Vet's more and more each day. We had our sweet CNA, had a great housekeeper, the food delivery lady was sweet and we were blessed with Kind nurses. Everyone who knows Lisa (and that is a LOT) came by to say hi. Our Arts for life person came to do art with her and decided she wanted to interview her for their website...all in all a great day! The icing on the cake was a huge balloon from Cole's prayer group, with a cute frog shape...Lisa loved it!!!

THANK YOU for your continued prayers they ARE working!!!


Sunday, July 22, 2012 7:39 PM EST

If you have logged in this week you already know this; however, Lisa will be admitted to the hospital tomorrow, July 23, for surgery on July 25, barring unforeseen problems. If you read here, you know that is a definite possibility. Add to that Pete opened some mail this AM stating Lisa's surgeon is NOT in-network for his new BCBS Insurance...and there isn't anything we can do to check this out until tomorrow...the day of admission. Please pray for peace for Lisa, she is more frightened this time than the March, May or June admission...I think this long, drawn-out process has taken its toll on her. After all the postponements for this surgery Lisa is slightly worried. She did great with the Cardiac Cath, her November hospital stay and her March surgery...but this is just dragging on forever. When they removed the Feeding tube, they told us that would be it, instant closing and instead Lisa has endured endless draining and bandage changes at least six times a day since February 24...I know most adults wouldn’t handle things that well.

We had a fun filled “Lisa Day” Yesterday and had a few unexpected PLEASANT surprises! Today has been a bit choppier; however, we are almost to the conclusion of the day. This is a tough week for us all coming up. It is the week of Rachel’s CSA Jazz camp her “favorite week of the year.” Thankfully one of her instructors has stepped up to help us out and while this requires LONG days for Rachel involving riding to the hospital daily as Pete heads in to work and returning after the camp, she is the best big sister and has nothing but concern for her sister...no complaints.

We had a huge scare Thursday, Lisa took a three day mini camp and when I came to pick her up Thursday she had fallen off the swing onto her head. I didn’t discover until the follwong day she had also injured her back with scratches and bruises. Thankfully she is okay.

Please, keep our family in prayer in the coming days and I will update as I am able. This past week has been very busy gearing up to be at the hospital for a week and I know the week following her stay will be equally busy. Thank you to those who continue to read here, to pray and to leave us such kind messages.

---

Saturday, July 21, 2012 4:07 AM EST

PLEASE start the prayers. Lisa will be admitted July 23 to Presbyterian Hospital for surgery on July 25. She is scared, as anybody would be who has endured what she has.

---

Friday, July 13, 2012 6:06 PM EST

So you want to help us??? Part 2

Many of you have expressed interest in helping us; however, don’t know how.

To contact Ellen on our behalf:

Nominate a deserving person

Nominate an inspiring person

Mailing address for Ellen:

The Ellen DeGeneres Show
PO Box 7788
Burbank, CA 91522
ATTN: Fan Mail


Also, My dear SIL, Susan, sent me this link of where she sent a request for help on our behalf.

George to the Rescue

GEORGE CONTACT INFO: Email Address George@NBC.com

THANK YOU for anything you do on our behalf. One person by themselves may not make a difference; however, collectively we all might make an impact SOMEWHERE! I will take ANY and ALL help! It ALL adds up. I had a very pleasant surprise today when two people, very close to me, brought us family packs of meat (chicken thighs, chicken legs, chicken breasts, beef stew meat, ground beef and some pork loin). The children, especially Lisa who LOVES meat more than anyone I have ever known, were ecstatic. My theory is LIsa has had less meat in her life than the other three because we didn’t become the working poor until after she was born. That is what our Vet called us yesterday...The working poor...that was weird to hear; however, I realize she is correct...we would NOT be the working poor if it weren’t for medical bills...there but for the grace of God, right? We make just slightly too much to qualify for anything. You must always remember though I think we are very blessed. Many of you who read here have blessed us in many ways over the years and I Thank you!

Please don’t think I am sitting idle. I have contacted MULTIPLE churches, builders, roofers, siders, window installers for discounted rates and help. In addition, we have contacted Habitat for Humanity Critical need, Love, Inc, and anybody else someone has sent us a link to. So far every lead has been a dead end; however, I KNOW that is going to change!

Brief update in other news:

*Bandit had a great report at the vet’s and she wants to see him in three weeks instead of two. She is also writing a letter to Ellen on our behalf and is having her staff do the same. She said if everybody would just tell their friends maybe we could make it go “viral”...I love our vet!

*Christian's neurologist was less than patient oriented (I am being kind) ; however, he was concerned that the MRI showed periventricular white matter lesions (yes, it is a mouthful) at his age and that they had NOT mentioned it in their MRI conclusions/impressions, which simply stated “no acute abnormality”...Today was the first time I have seen the report...seriously, THIS is what you reported??? They took more blood and scheduled Christian for an MRI with contrast and a sleep deprived EEG, as well as, a followup with his neuropsychologist (he has ADHD) to see if there are any measurable cognitive changes. He has had some vision changes (Andrea, I need you) so we also need to get a vision exam and new glasses (or at least new lenses).

That is enough to keep you busy. I realize some of you have VERY limited time. The Ellen site ONLY takes 1500 characters. You could write something VERY briefly if you want to help us. If you feel more passionately you could send a letter of any length. Also, I don’t Facebook; however, several have asked if they could post this to Facebook...YES! To your church, to your friends to WHOMEVER! We will NOT look down at ANY HELP what so ever! We will Thank God and give Him the glory for what IS about to happen! You could just say this is for the Pete and Judy B Family if you post to public places...I am certain Ellen or whomever will figure it out if they get inundated with requests, lol. Also, feel free to post the link to Lisa's MAW Reveal Video.

http://www.youtube.com/watch?v=crikBl5BtpI

---

Tuesday, July 10, 2012 8:44 PM EST

So many have asked how they can help and I have a suggestion.

My friend and I and I were talking about this last night. I am not one to ask people for things, far more people have worse things than we do. That being said, when I returned from taking David to woodworking I turned on the TV and Ellen was giving a trip to Disneyland to a family whose refrigerator had broken. Rachel said we had a leaky refrigerator and more, I wish she would help us. (MY friend said this show was a rerun). Now over the years people have written to talk shows on our behalf; however, we never heard anything. I wrote to Ellen last year, I wanted her to hear what a great guitar player Rachel is. I said to my frined, I wonder if we could get a LOT of different people writing her and telling her about us, if THEN they might be interested in helping us get rid of these bats! All it would cost is some time...so if you are inclined to try it, I am inclined to suggest it...anybody remember the Faberge organics shampoo commercial... "And they'll tell their friends- and so on, and so on, and so on..." The worst that can happen is they will ignore us...which they already have!

Please take a moment today to Thank God for Pete's Dad. Today is his birthday. Also, Thank him for my sweet SIL (Pete's sister). She was in a wreck Saturday night (Not her fault) and while she is banged up, her car was totaled.



Monday, July 9, 2012 11:44 PM EST


I can't let the day pass without recognizing two very important anniversaries in the life of our family. They both changed WHO we are as people and as a family.

July 9, 1996...our home burned to the ground. We lost almost everything possession wise and it is true, what you miss are the things you can't replace...locks of baby hair, love letters from a war, pictures of your life and your Granddad's WWI Campaign cover...It was quite clearly heart breaking and tragic and as I type the words, I am shedding tears...not for the things, but for the memories...

July 9, 2004...Lisa's third open heart surgery was this day. I did NOT want to have the surgery on this date, I had a fear of bad things happening BECAUSE of this date...and it was a HUGE success. We traded the memory of a BAD anniversary for one with cause to celebrate...and I DO celebrate this date now for BOTH events...because without that fire I would NOT be who I am today...And my family is together, STRONGER than ever! We have our trials, of that everyone is certain...but we have far more Blessings!! If you are signing in here than you are one of them!!! Thank you!




Sunday, July 8, 2012 4:19 PM EST

I had another bat loose in my house, Animal Control just caught it in our bedroom. I need help and have no idea what to do.



Sunday, July 8, 2012 7:09 AM EST


There has been SO much NOT good going on around here; how about another installment on our trip??? It has been a month since I last posted on the MAW trip, I will remind you that we had a most excellent morning at DHS and were going to Epcot for the remainder of the day.

From DHS, we decided to pop over to Epcot, we LOVE that park and truly enjoy exploring it. We were excited by our decision to visit. We took the obligatory pics in front of Spaceship Earth...the sun was SO bright and hot, it was hard for us to have our eyes open.

Where did we go first....Living with the Land...we do enjoy this ride, although it will never be the same since they did away with the individual tour guides on each boat. We actually had the pleasure on a previous trip to be the last boat to dock with a tour guide. We love all of the sights, the sounds, the smells and what this ride represents. I only posted a few pics. including the Tilapia Tank...I love Tilapia, it is my favorite fish. I won’t bore you with all of my pics from this; however, had to post a few.

We left The Land and went to Soaring, where even with the Green light GAC we waited 50 minutes. They actually kept us waiting through TWO ride rotations because they were having “technical difficulties” and couldn’t accommodate Lisa’s W/C...no one could ever explain what those difficulties were and it truly seemed they were deliberately holding us up, although I have no idea why. We have ridden soaring before WITH Lisa in her W/C and they did exactly as they did when they finally let us in: I transfer her to the ride and they wheel the chair away...it worked this way when we finally boarded as well, so honestly I have NO idea what the holdup could have been. Not wanting to be rude or create a scene, we went with the flow, we were close enough to see the door and knew we MUST be coming up soon! The good news was they put us on the top row, which really is the best way to ride, no body’s feet are hanging in your face. We do LOVE this ride! We left there and went over to ride Nemo. They sent us through the FP lane because of the GAC, although those w/o a GAC walked directly on the ride while we weaved in and out of the turnstiles...all the chains were up, even tough the line was fairly empty. I didn’t understand that either. I enjoyed this ride much better this time around, we rode it when it first opened and were not impressed. I think knowing what to expect made it better for us. Plus, I was happy to sit down, my blisters hurt.

We left the Seas immediately because our wish Princess REALLY wanted to ride Test Track, her FAVORITE ride (that and Splash Mountain, she would do those two rides exclusively if given the opportunity). By this point in Epcot no less than 6 different CM’s had wished Lisa a Happy Birthday...we had no idea why. Maybe it was our buttons?? It was starting to get old by this time. When we arrived at TT they tried to send us through the FP line that had a 65 minute wait. I asked the young lady if that was the correct way for Wish Families and she told me she didn’t realize we were on a Wish trip...in spite of the green light on the GAC, the buttons we were all wearing and the HUGE sign on on Lisa’s W/C that said Lisa’s Make a Wish Trip. I thanked her profusely for her help and we went in the back way, and got on the ride within 10 minutes...They were so nice to us, they let my Princess and family ride TWICE! Here are those photos. Poor David is always worried about his eyes, so he keeps his head fairly rigid: he doesn't want anything to fly into his eyes and he uses his glasses as a safety glass...in spite of the fact he isn’t smiling (he is concentrating) he LOVES this ride as much as we do.

We got off of Test Track and headed directly to World Showcase, we were HUNGRY!

Pete ran to Germany to get two more pretzels, Christian and David headed to the outpost to get two Strawberry drinks (LOVE these...and they only had enough to make ONE so they got that and a coke one..not my fave. I am a diet coke girl). Lisa, Rachel and I got an order of chicken tacos, then we all met in Norway and got school bread and a cream horn to share a sampling between us. It was DELICIOUS!

We were satiated by this point and did a quick ride in both Norway and Mexico. We realized we had time to ride The Land one more time, so we headed back to Future World. At this point in time I realized my blisters were making blisters. I had been fighting the problem all afternoon and Pete kept trying to get me to get a free W/C (a perk of the MAW GAC). I said absolutely not, I am able bodied and could walk, no problem. As we were walking I realized that it would be in my best interest to let them run ahead and ride one last time without me. So that is what they did...I strolled along leisurely and sat down outside to people watch. I am always amazed at how rude people are to those in W/C’s and ECV’s...I know they can be slow and take up more space; however, there really should be an etiquette course as to how to be good guests from both those who walk, as well as those who ride.

It was getting late and Future World was closing, so we headed to Spaceship Earth, because we KNEW they would be open later. We went in and only had a 10 minute wait until they took us on our first glimpse of the updated ride. LOVED it; however, we have always loved it. The children like the new interactive portion (honestly, I can take it or leave it). The children had some fun playing around with the interactive displays and then they wanted to ride again, so we asked, waited about 10 more minutes and rode once more. By that point in time we were exhausted and Lisa could hardly hold her head up.

I will post what I journaled that night. We had been told repeatedly by cast members they didn’t realize we were on a Wish Trip (a problem we didn’t encounter at DHS). It seemed that it should be fairly evident by the GAC that the CM’s all looked at when I happily showed it to them. I stopped by Guest Services on our way out to ensure that we were following ALL of the protocols and rules. I wanted to make sure we didn’t do anything wrong or make it tough for Wish Families who came after us...plus, I genuinely do treat others the way I want to be treated.


The Disney Studios, for the majority of our visit was MAGICAL (So much magic and so many pleasant people, you will be amazed!)...Epcot, which I LOVE was not....in fact, I was told that a greenlight on the front of a guest assistance card did NOT mean front of the line access. That was not my question, but Harvey in guest services felt the need to pull put a GAC and show me quite clearly that it plainly stated on our GKTW GAC that we did NOT get front of the line access, that each manager at each ride decided how all GAC’s are used in their area and that accommodations were at the whim of the person manning the ride...but I was always welcome to ask for a manager, although we often would have to wait for one to be free to discuss our “problem.” Wish Children are NOT afforded any special accommodations except at character interactions....per Harvey. AFTER the fact, I realized I should have asked for Harvey’s manager, but I was tired and wanted to go home....and was quite surprised my inquiry as to how to ensure a cast member realized we were MAW turned in to that! Lisa is IN her W/C, with her pink GKTW button and a sign that reads Princess Lisa’s Make a Wish Trip in big letters and we ALL 6 have on MAW buttons. Upon approach to the cast members, I immediately show the GAC, with the greenlight (and do it with a huge smile and THANK YOU) and both at Spaceship Earth (10 minute wait~not bad), Soarin (50 minute wait) and test track (NO WAIT, because I pointed out we were MAW and the girl said she didn't realize and sent us an alternate way). At all three rides, I was told they didn’t realize we were MAW. I stopped at GR to ask if we were doing something incorrectly or if we were following protocol...Harvey told me and I quote “Most of the CM’s have never seen the greenlight, so they treat it the same as on ANY GAC and he didn’t know why I felt we were entitled to more anyway, NOBODY received front of the line access.” BELIEVE ME, I had prefaced the entire conversation with how GRATEFUL we are, just wanted to make sure we were doing things right, I certainly do NOT feel entitled...so when the GAC expires on Wednesday (we have extended our trip past what MAW does for Lisa’s sake), it really will not matter...we are getting the same accommodations as a person with a GAC.

I vowed to NOT let this incident ruin the other magic of our day and we were strongly question if we even wanted to return to Epcot later in the week.

We arrived back at the GKTW Villa and ordered pizza and took baths as we waited for the pizza to FINALLY show up at 10:30...we were hungry! The girls and I each had two slices and I tucked them in bed with dreams of more fun to come...The guys finished off the pizzas while I washed clothes and got things ready for the next day.

PLEASE don’t be bummed out by this. I vowed to keep my reports real, true and accurate and that is what I am doing. It DOES get better! I promise!!!

---

Sunday, July 8, 2012 7:09 AM EST

There has been SO much NOT good going on around here; how about another installment on our trip??? It has been a month since I last posted on the MAW trip, I will remind you that we had a most excellent morning at DHS and were going to Epcot for the remainder of the day.

From DHS, we decided to pop over to Epcot, we LOVE that park and truly enjoy exploring it. We were excited by our decision to visit. We took the obligatory pics in front of Spaceship Earth...the sun was SO bright and hot, it was hard for us to have our eyes open.

Where did we go first....Living with the Land...we do enjoy this ride, although it will never be the same since they did away with the individual tour guides on each boat. We actually had the pleasure on a previous trip to be the last boat to dock with a tour guide. We love all of the sights, the sounds, the smells and what this ride represents. I only posted a few pics. including the Tilapia Tank...I love Tilapia, it is my favorite fish. I won’t bore you with all of my pics from this; however, had to post a few.

We left The Land and went to Soaring, where even with the Green light GAC we waited 50 minutes. They actually kept us waiting through TWO ride rotations because they were having “technical difficulties” and couldn’t accommodate Lisa’s W/C...no one could ever explain what those difficulties were and it truly seemed they were deliberately holding us up, although I have no idea why. We have ridden soaring before WITH Lisa in her W/C and they did exactly as they did when they finally let us in: I transfer her to the ride and they wheel the chair away...it worked this way when we finally boarded as well, so honestly I have NO idea what the holdup could have been. Not wanting to be rude or create a scene, we went with the flow, we were close enough to see the door and knew we MUST be coming up soon! The good news was they put us on the top row, which really is the best way to ride, no body’s feet are hanging in your face. We do LOVE this ride! We left there and went over to ride Nemo. They sent us through the FP lane because of the GAC, although those w/o a GAC walked directly on the ride while we weaved in and out of the turnstiles...all the chains were up, even tough the line was fairly empty. I didn’t understand that either. I enjoyed this ride much better this time around, we rode it when it first opened and were not impressed. I think knowing what to expect made it better for us. Plus, I was happy to sit down, my blisters hurt.

We left the Seas immediately because our wish Princess REALLY wanted to ride Test Track, her FAVORITE ride (that and Splash Mountain, she would do those two rides exclusively if given the opportunity). By this point in Epcot no less than 6 different CM’s had wished Lisa a Happy Birthday...we had no idea why. Maybe it was our buttons?? It was starting to get old by this time. When we arrived at TT they tried to send us through the FP line that had a 65 minute wait. I asked the young lady if that was the correct way for Wish Families and she told me she didn’t realize we were on a Wish trip...in spite of the green light on the GAC, the buttons we were all wearing and the HUGE sign on on Lisa’s W/C that said Lisa’s Make a Wish Trip. I thanked her profusely for her help and we went in the back way, and got on the ride within 10 minutes...They were so nice to us, they let my Princess and family ride TWICE! Here are those photos. Poor David is always worried about his eyes, so he keeps his head fairly rigid: he doesn't want anything to fly into his eyes and he uses his glasses as a safety glass...in spite of the fact he isn’t smiling (he is concentrating) he LOVES this ride as much as we do.

We got off of Test Track and headed directly to World Showcase, we were HUNGRY!

Pete ran to Germany to get two more pretzels, Christian and David headed to the outpost to get two Strawberry drinks (LOVE these...and they only had enough to make ONE so they got that and a coke one..not my fave. I am a diet coke girl). Lisa, Rachel and I got an order of chicken tacos, then we all met in Norway and got school bread and a cream horn to share a sampling between us. It was DELICIOUS!

We were satiated by this point and did a quick ride in both Norway and Mexico. We realized we had time to ride The Land one more time, so we headed back to Future World. At this point in time I realized my blisters were making blisters. I had been fighting the problem all afternoon and Pete kept trying to get me to get a free W/C (a perk of the MAW GAC). I said absolutely not, I am able bodied and could walk, no problem. As we were walking I realized that it would be in my best interest to let them run ahead and ride one last time without me. So that is what they did...I strolled along leisurely and sat down outside to people watch. I am always amazed at how rude people are to those in W/C’s and ECV’s...I know they can be slow and take up more space; however, there really should be an etiquette course as to how to be good guests from both those who walk, as well as those who ride.

It was getting late and Future World was closing, so we headed to Spaceship Earth, because we KNEW they would be open later. We went in and only had a 10 minute wait until they took us on our first glimpse of the updated ride. LOVED it; however, we have always loved it. The children like the new interactive portion (honestly, I can take it or leave it). The children had some fun playing around with the interactive displays and then they wanted to ride again, so we asked, waited about 10 more minutes and rode once more. By that point in time we were exhausted and Lisa could hardly hold her head up.

I will post what I journaled that night. We had been told repeatedly by cast members they didn’t realize we were on a Wish Trip (a problem we didn’t encounter at DHS). It seemed that it should be fairly evident by the GAC that the CM’s all looked at when I happily showed it to them. I stopped by Guest Services on our way out to ensure that we were following ALL of the protocols and rules. I wanted to make sure we didn’t do anything wrong or make it tough for Wish Families who came after us...plus, I genuinely do treat others the way I want to be treated.


The Disney Studios, for the majority of our visit was MAGICAL (So much magic and so many pleasant people, you will be amazed!)...Epcot, which I LOVE was not....in fact, I was told that a greenlight on the front of a guest assistance card did NOT mean front of the line access. That was not my question, but Harvey in guest services felt the need to pull put a GAC and show me quite clearly that it plainly stated on our GKTW GAC that we did NOT get front of the line access, that each manager at each ride decided how all GAC’s are used in their area and that accommodations were at the whim of the person manning the ride...but I was always welcome to ask for a manager, although we often would have to wait for one to be free to discuss our “problem.” Wish Children are NOT afforded any special accommodations except at character interactions....per Harvey. AFTER the fact, I realized I should have asked for Harvey’s manager, but I was tired and wanted to go home....and was quite surprised my inquiry as to how to ensure a cast member realized we were MAW turned in to that! Lisa is IN her W/C, with her pink GKTW button and a sign that reads Princess Lisa’s Make a Wish Trip in big letters and we ALL 6 have on MAW buttons. Upon approach to the cast members, I immediately show the GAC, with the greenlight (and do it with a huge smile and THANK YOU) and both at Spaceship Earth (10 minute wait~not bad), Soarin (50 minute wait) and test track (NO WAIT, because I pointed out we were MAW and the girl said she didn't realize and sent us an alternate way). At all three rides, I was told they didn’t realize we were MAW. I stopped at GR to ask if we were doing something incorrectly or if we were following protocol...Harvey told me and I quote “Most of the CM’s have never seen the greenlight, so they treat it the same as on ANY GAC and he didn’t know why I felt we were entitled to more anyway, NOBODY received front of the line access.” BELIEVE ME, I had prefaced the entire conversation with how GRATEFUL we are, just wanted to make sure we were doing things right, I certainly do NOT feel entitled...so when the GAC expires on Wednesday (we have extended our trip past what MAW does for Lisa’s sake), it really will not matter...we are getting the same accommodations as a person with a GAC.

I vowed to NOT let this incident ruin the other magic of our day and we were strongly question if we even wanted to return to Epcot later in the week.

We arrived back at the GKTW Villa and ordered pizza and took baths as we waited for the pizza to FINALLY show up at 10:30...we were hungry! The girls and I each had two slices and I tucked them in bed with dreams of more fun to come...The guys finished off the pizzas while I washed clothes and got things ready for the next day.

PLEASE don’t be bummed out by this. I vowed to keep my reports real, true and accurate and that is what I am doing. It DOES get better! I promise!!!

---

Friday, July 6, 2012 9:22 AM EST

Christian had an email yesterday from the GREAT place he had the amazing interview with...you know, the one who wanted to take Christian out to lunch for a second interview TODAY with two of their web developers, he had liked Christian that much at their initial meeting. He told Christian that during the interview phase last week and he would let him know what time on Thursday.

Seems the staffing agency he hired found them a mid-level person with ALL of the skills sets his company needed and he hired him... so no lunch interview today...I told Christian to try NOT to be too disappointed, at least he received a nice email telling him how good he was, especially for an entry level person...LOTS of places never even give you the courtesy of a response! Christian wrote a very well thought out reply, I was so proud of him! He definitely did NOT burn any bridges and who knows what the future holds...God already has THE perfect job picked out for him and Christian DOES believe that!

---

Sunday, July 1, 2012 5:47 AM EST

Sharing some pics of my precious Princess and her wonderful pottery. They didn't let us bring some of the pieces home: Her bowl from the pottery wheel, cats and more from their cat beach "shared" project and I am not sure why, other than the fact they didn't glaze them. I even asked for them and they said no...

The first picture was of Lisa baking her Chocolate Chip cookies. She had the dough on the plate and was shaping them as the first batch cooked.

The first piece they made was to show how pottery could look like stained glass. Lisa told us a story they shared about a potter who would smooth his work using balloons to make it look like stained glass...they formed and dried these pieces around balloons. The next piece was a cat mask. The inspiration for this was a lady potter, who was ill. She loved to make cat masks, unfortunately she died. This made Lisa very sad; however, she told me not to worry, the potter was with God..that made ME cry...You can see her sharing some of the stories with Pete as she shows him her creations.

Next up was the Rain Forest Inspiration, it is a "log" and on it she has a spider, two worms and some blueberries...she also made broken branches...LOVE it! The next one is her frog holder, his mouth is large enough to put things in to hold. None of the pictures do these pieces justice, this one least of all. This frog and it's detail is AMAZING! The last piece is the vase, inspired by Cat in the Hat...they took strips and pieced this vase together, so pretty! The flowers were what we gave her following her ballet recital this year (instead of fresh flowers that would die). I had bought them from the Disney Store last year for 2 bucks, it is Cinderella's wedding bouquet...

Funny thing, Tuesday night we were watching TV when a commercial for Edible Arrangements came on and Rachel said she wished we had one. Then she said what she REALLY wanted was chocolate covered strawberries (One of my faves too). The girls went to bed shortly after that. Fast Forward to Wednesday MORNING and Susan, Pete’s sister called to see if we would be home Friday. I would NOT but somebody would be...she was sending us all an edible arrangement to cheer us up, what a sweetie! The last picture is of the edible arrangement, it was SO yummy and so refreshing with our dinner! I had put it in the middle of the dinner table (It was the highlight of our meal).Thank you Aunt Susan, it was DELICIOUS!!! And the fruit is all gone!

Saturday as not been as smooth as the previous two days. We breezed through the registration process at the hospital and Christian, Pete and I received our shots quickly...and that was where our good luck ended. I took the children up to the pediatric floor while Pete and Christian finished their shots. Christian joined us, while Pete moved the car around to the opposite end of the hospital, to make it easier when we were done. I had called ahead to have the children’s shots sent up from the pharmacy. When we arrived on the floor, it seemed they had given two of the three shots to another family receiving shots for rabies...we waited for about 90 more minutes for them to clear up their confusion and then FINALLY we all had our vaccine series FINISHED!!! It was 12:43 pm.

We had planned to take the children out to celebrate, I had a twenty percent off coupon off EVERYTHING (which is now expired) and $30 in gift cards at a local restaurant and we were so excited! Unfortunately on our return to the car the tire was flat...it appeared someone had stolen the hubcap and damaged the tire...unbelievable. (Why do we think that? The hubcap was missing and the tire was flat...and it was perfectly fine when we went to the hospital AND when Pete drove it to the other lot). The good news was I could take the children back in to the hospital to stay cool (103 degrees outside) while Pete changed it. It cost us $124 to replace at Sam’s (it took over two hours)...no celebration lunch for us. And one of my wheels is naked without a hubcap. :o( I AM thankful our shots are finished!

We went over to my parents to visit after dinner Saturday. Today is my Dad’s birthday and they typically celebrate with my sister, so I wanted to make sure I saw him. As it turned out, she saw him Saturday too. I invited my parents for lunch today; however, my Dad was looking forward to staying home, relaxing and eating a good country style steak dinner prepared by my Mom...I think that sounds like a GREAT way to celebrate! Happy Birthday Dad!!!!

---

Thursday, June 28, 2012 7:50 PM EST

Bandit had another vet appointment today. For those who don’t know, Bandit nearly died New Years and through the grace and blessings of God he survived. As they say at the vet office , he IS their miracle dog. To this day they still call him Bandit, our Miracle Dog at the Vet’s office. He gets SO much love and attention when he goes there. We could use a few prayers on his behalf please. Typically they would have waited to give him his rabies shot, which was due in late July; however, in view of the bat scare, she wanted to give it early. The problem is there IS the possibility of triggering an autoimmune response, so she wants Bandit to return in two weeks, then in two more weeks (we had been able to wait four weeks this last time)...drum roll please.....For the FIRST TIME IN HALF A YEAR, Bandit is off ALL medications! There was a point in time that he was taking meds. 20 out of 24 hours a day, so this is HUGE!!! There are many of you that helped pray this miracle with us and I just have such a feeling of incredible love and gratitude for you all and ask you to continue to keep our family in prayer. We DO have our fair of the bizarre and we have MORE than our fair share of blessings!

As for Christian's job interview...well, I don’t want to jinx everything but it went well!!! It is an entry level position, which is exactly what Christian is looking for. I think the owner of the company finds Christian refreshing and open, a trait you don’t see in a lot of 21 year olds. He has a dedication to family that was valued by the owner of the company and he asked Christian how he felt about working for a company that deals with some faith based content and web projects...Uh, hello, that was the easiest question of the day! They actually do a portion of their work as charity work as a way to give back to the community...I LOVE it! The neat thing about this position, when Christian contacted the company at the end of May, they had NOT posted a job vacancy. He was sending out cold resumes/emails and this gentleman contacted Christian back, telling him that he was going out of the country for several weeks and would contact him on his return. Christian followed up last week by email and he received a call from him on Tuesday....first interview today. It went well. He told Christian the good, the bad and the ugly...seems like a great company (NO insurance, they receive a stipend...which actually works well for Christian, since he is on our policy)! He could use that money for co-pays or his school loans. There IS a probationary period of course, which is expected. The owner has listed the job to the general public; however, he told Christian even though he was the first interview...he was VERY impressed with Christian, liked his personality and the work he had seen and already knew he wanted a second interview between Christian and two of their web designers. He also wants someone to do some graphic arts work, which Christian LOVES...design and concepts are right up there in his interests. Bottom line, he LIKES Christian and Christian was SO excited! They have a great employees lounge complete with big screen TV, ping pong table , comfy chairs and I can’t remember what else Christian said...All I saw was the excitement in my son’s eyes over the prospect of a paying job. Please pray if this IS the job for Him that he will know that if it is offered to him. The only downside is the commute is through a heavily traveled area and even on a great day will be thirty minutes... in the opposite direction of Pete, so he WILL need a car...but he needs one anyway!

I KNEW this was going to be a great day!

---

Wednesday, June 27, 2012 5:56 AM EST

$3,300 is the price to get rid of the bats...well to be honest, it is only $3,285 plus the $149 for Batman's inspection, which actually will total $3,434...we have literally 100's of gaps in our masonite siding that need to be sealed...and they will guarantee the work...until more holes develop in the siding which is GOING to happen, the house is old...so I asked if it wouldn't be smarter in the end to just have new vinyl siding put on to replace the masonite that already is long overdue to be painted (yes, like I can afford that...but should I pour bad money on top of bad)? He said no...but then HE wouldn't get all of that money if we did that. He DID say Vinyl siding would take care of the siding/bat problem long term, bats can't penetrate that! I am so confused! We also need multiple boxing shelves, a boxing end, ridge end caps and more "stuff" I don't get and am too overwhelmed too understand.... too remove the bats is only $150...but if we don't take care of the other "stuff" the bats WILL come back. As much research as I have done I know intellectually this is what has to be done to get rid of the bats...now if I could just figure out HOW to pay for it...I feel completely sick...I asked him about waiting until the August time frame we were told and he said and I quote "Sc..w that, your family's health is in jeopardy"...Crazy Batman (That is how he introduced himself) ...He was just what you would picture a man who hunts critters would look like...

Let me leave you with two happy things on top of this money pit that is my life...Lisa is participating in Community School of the Arts Pottery Camp this week and having a BLAST! She was given a scholarship; however due to the expected surgery we weren't sure if she would be able to use it...she is and is LOVING it!

Christian has a job interview tomorrow! He is SO excited...to the point that after he got the call yesterday, he was running around celebrating (we were at the MD office) and he stubbed his toe, knocking off part of his pinkie toenail...he said no worries, he was fine, just so HAPPY! (Looked painful to me). He had to call me to set the time for the interview with my schedule, he NEEDS a car, poor sweetie.

This put such a HUGE smile on his face, he wants to be "useful"... I keep reminding him what a GREAT help he has been to me in the mean time as he looks for a job. He is simply eager to get on with his life...I don't blame him! I hope THIS interview actually goes along with his major and they aren't wasting his time...



Saturday, June 23, 2012 2:06 AM EST


We had a wonderful day yesterday at District Day for 4H...I have to say, I had no idea all of this was going on and learned a LOT! Rachel performed quite well, in spite of the fact no one knew what was gong on and how/where we were to set up. We wanted to get Rachel's amp/CD player for her rhythms, etc set up on stage and we were told we would NOT be using the stage, we needed to pull everything out when it was her turn....NOT true, but we managed to move everything when needed. The biggest surprise was that literally 90 seconds before judging started, they plucked 2 of the three judges from the host "helpers' since two of the judges didn't show up...I had to laugh, because one of the critiques on her score sheet was that while she appeared to know her instrument quite well, she should put forth more effort while performing, she was to much at ease/comfortable while performing...um, yeah...and scored her 24 out of 25 for performance...All of the other scores/critiques from all of them was exemplary...I also had no idea that what was happening yesterday was being videotaped. They will send it to the 4H leaders who are hosting Congress in Raleigh in July...Which I have never even heard of in the four years we have been a part of 4H. 4H is the ONLY thing I try to have Pete take care of and it seems MANY things have been lost in translation through the years...anyway, back to Congress...they will pick several of yesterday's acts to come to Congress and perform for them all. Even if they DO pick Rachel I am not sure that Rachel will be able to participate. She said she will not go unless I can come and they will NOT allow me to stay on campus with her, I would need a hotel room for 3 to 4 days and there is NO WAY I could afford that. She still has medical needs that require me to be close to her. I had NO idea that is what she was competing for , I thought it was for another day like yesterday, didn't know it was like this. I can't blame Pete, I honestly think our 4H leader has simply not shared this info, or if she has no one understands, because we have never sent anyone to Congress that I know of...so YES, yesterday was quite a LONG, but educational day for me! We will be getting MUCH more involved at the State level, I can assure you!

We had a fun time in the van visiting and getting to know everyone. It was such a GREAT day of fellowship. The most fun part of the day for me was discovering that the new intern for the extension office is the daughter of one of my FAVORITE nurses at the hematology clinic, proving once again what a small world it really is! No kidding, by the ned of the trip we were talking about Disney and she was saying she would love to take her Aunt who is mentally challenged and lives with the family. I was thinking how much fun it would be to go with them, when KRISTIN said...I know, lets all go together! It was so funny, because we were all on the same wavelength about EVERYTHING. We literally all talked non-stop for HOURS! It was good to be able to visit with people outside of an MD office!

David and Lisa did a marvelous job together and Lisa told me David was very good to her. When I asked her how her leaking was she said she had changed her shirt three times...I honestly am so sad, I really thought we were going to have this close and the leaking having slowed down for several days lulled me into such a false sense of security...I really am a hopeless Pollyanna...I checked her bandage and it was so neatly in place. I asked Lisa if David had changed it and she said, no I did. When I expressed surprise at how well she had done, she very matter of factly told me it was easy, it was just gauze and tape...it makes me proud and a little sad that my nine year old daughter takes all of the medical "stuff" in stride...

My parents very generously took David and Lisa out to lunch and David said they were with them for about two hours, and I was so appreciative to them for coming over.


We will spend the better part of the morning/afternoon at the hospital again, we all need our third dose of rabies vaccine...I can't remember if I shared, they are coming out Monday to give us an estimate on repairs/cleanup from the bats...so many concerns and emotions...but we are beginning to laugh over some of this mess...something I was SURE last weekend would never happen...



Thursday, June 21, 2012 7:41 PM EST

Check the history if you missed any of the latest, especially on the bat saga. We have more rabies shots June 23 and our last set June 30. Someone is coming out to check them out on Monday, please pray it is cheap. Our ER visits are $150 a PERSON each time we go, costing us a total of $3,600 by the end of them next week...not counting what the bats will cost us...We need the house painted, new windows, rotten wood replaced and so much more...we get nothing but constant medical bills and fixing problems...and yet I KNOW we are blessed and thankful there are shots to prevent this horrible disease.

Rachel, Christian and I will be going to the 4H District Day tomorrow in Fayetteville, N.C. (three hours away. We are riding with others from the district office to save the gas money :o). Rachel is representing Cabarrus County in the talent show. Pete is not going with us, we have a tape for back up Rhythm...not ideal; however, we had no choice. Rachel will do her best and while it will not be the same as having a live rhythm guitar...Rachel is good and hopefully will be able to put in a great showing for the county! I am SO proud of her, she is just phenomenal! David is baby-sitting and my parents are gong to come by and check in and spend time with them thankfully.

I had really thought Lisa had stopped leaking; alas tonight at dinner when she GUSHED it was evident that wasn't true, sadly. Her next surgery has been scheduled for July 25, with admission on July 23...PLEASE pray correct decisions are made for her...

---

Wednesday, June 20, 2012 1:07 PM EST

First, THANK YOU ALL for the great messages, it is great to see so much support, care and understanding... My sister told me my life was like a novel, often unbelievable.

I did finally sleep in my bed again Sunday night (after the guys went around sealing up ANYTHING bigger than a dime sized slit into our bedroom/bathroom...not that they could find much of anything to seal), with the lights on and then again last night with the lights off. I have had a sheet covering my entire body, including my head both nights. I am still freaked out and lie there listening for any rustle of sound.

The hospital on Tuesday was not as bad as Saturday; however, it is all relative. We were there from 9:45 AM until 2:15 PM. Christian and I got in and out within 30 minutes and that was with registration. David, Rachel and Lisa didn't have to preregister and it took FOREVER or so it seemed...Thankfully it was only ONE shot and we could have it wherever we wanted, we all chose our left arms. Rachel said she wanted hers in her thigh; however, she forgot. These shots do seem to give Lisa and I a headache and me the hives...but we only have two more doses, Praise God. Lisa didn't even cry when I told her she had to get a shot...as she said, just one? In my arm? Piece of cake. We STILL have to get shots Saturday, then again the following Saturday.

Lisa's surgery has been re-scheduled for July 25 (admission on July 23). This is a mess, it is the week of Rachel's once a year Favorite week of the year Jazz Camp...I am praying for a complete healing of the fistula, which has turned a bright red inside...I hope that is a GOOD sign, not a problem. The surgeon's nurse said yesterday she wished it would heal as well and I said from your lips to God's ears! Lisa saw the hematologist today. Her INR was 1.3 and NEEDS to be 2.3....This summer has really been off to a not great start. It seems so incredibly surreal....



Monday, June 18, 2012 9:07 AM EST

I hope you were able to enjoy a special day with your family for Father’s Day. I know Pete missed his usual jovial talk with his Dad; however, he was able to talk to his Mom and vent over this latest hit to the family. I talked to my own Dad, I am glad he is still with me. I fixed the family a huge breakfast and we tried to enjoy ourselves in spite of the events of the past few days.

I once again want to Thank each of you who have been here with kind messages of support. It truly means a lot. Our family needs prayers as we wade through this newest insanity. We each have reacted to these shots in a slightly different way, although I will say it isn't nearly as bad as we feared.

As for the house...as I mentioned, bats are federally protected by law. Some states actually have more specific laws. If you really want to know, google it. Pete is in charge of getting pest control to help us, while I navigate the medical issues...I think that is fair. Christian, David and Pete went around our house and sealed up ANY places we even suspected they could come in to our living space...we really have no idea HOW a bat got inside; however, every inch of our house has been inspected by them. We know how the bats are entering the attic; however, in case their are babies Pete can't seal it off, because then the babies would die and begin to smell and the area is so close to the edge of our rafters it is impossible to get to (again pest controls hands are tied right now by federal law)...and baby bats don't fly we have been told. We are going to clean up the areas affected, then it will be done again following their expulsion...I don't want to discuss this anymore, it makes me sick. Google it if you want more info. Get your houses inspected and sealed for bats! Do it this week! Had I known to do this I would have. Now YOU know. Often it takes someone else's misfortune to educate you, please do this for your family. Again, I truly had no idea, it is all I can do many days just to get through the medical stuff...

I just wanted to thank you all once again, you have helped me with your kind words. It means a lot...

---

Saturday, June 16, 2012 10:06 PM EST

Hi GInger, I will try to answer “why all of the drama”. We have been exposed to these bats for approximately three months, per animal control. They can tell because of their experience with bats and their habitats. Our exposure has come because they are living in our attic. We know for fact a bat was in our bedroom. They said where one is seen many more may have also been. They could have been in and around our living areas many times that we have no idea. The mere fact they are in our attic means that we have been breathing fumes from their urine and bat guana for a long time and there is a more than 1/2 possibility one of them has rabies, 60 percent of bats do and of the 22 documented cases of rabies last year, 20 came from bats. Rabies is 100 percent fatal and 100 percent preventable. As the evidence was presented to us by six different people today, along with my own research it was clear we had NO choice but to begin rabies shots. I can assure you, the ER we went to didn’t understand the concern since were weren’t bitten, nor the severity either because they were uneducated. I have learned more about bats, rabies and federal laws the past 72 hours than I ever wanted to know. The ER called the NC State authority on rabies (who knew there was such a place) and he kindly informed the ER staff of the severity of our exposure...because I assure you, what happened to my family today, I would not wish to happen to anyone.

After we told the girls and Lisa cried her eyes out at the thought of getting a shot, we left for the ER, where we had to deal with uneducated folks. All but one was kind, one was a self appointed know it all receptionist, who wanted to turn us way... unseen...lets just say, she is in for some patient retraining and customer service, including what the HIPPA laws are. She was also overheard telling someone on the phone that an entire family with rabies had just entered the ER. Stacy M. will remember us for a long time to come, both the charge nurse and the patient advocate saw to that. I could say more, I won’t. EVERYBODY else in the ER was kind and treated us with respect and care. By the end, they were all coming by to see my beautiful children and their kind manners.

We had to wait for them to get enough vaccine from another hospital, they didn’t have enough to treat us all. They finally had everything they needed and began the arduous process of administering shots. In addition to rabies vaccine, you have to receive rabies immune globulin (RIG). RIG dosage is based on weight (another excellent reason to lose weight). Lisa was the first to receive her shots...I had no idea of how many till they came in, I DID know they would be painful and they were. She got two in her buttocks and two in her thigh, for a total of four horribly painful injections. They had the girls in one room, the boys in another. They alternated rooms, to keep us straight. David was next with two in his buttocks, two in his thigh and two in his arms, for a total of 6. Next was my turn with three in my buttocks, two in my thigh and two in my arms, for a total of 7. Then came Pete. He received two in his buttocks, two in his thigh and two in his arms: Total of 6. Next it was Rachel’s turn. She endured two in her buttocks and two in her thigh, for a total of four. Last was Christian, three in his buttocks, two in his thigh and two in his arms, for a total of 7. They were far worse than a tetanus shot and caused us pain, all because bats have invaded the sanctity of our home.

We still need to return three more times, for additional doses of rabies vaccine only, thankfully. The three adults have to report to one place for our shots and the three children to another...oh goody, much more waiting! It took us more than seven hours today...We return Tuesday, Saturday and the following Saturday for these injections. I am so NOT happy about any of this and there is a lot more I am just too tired to type. If you want to know more, google bats and find out the federal laws in place to protect the bats rights.

It will be another long and now painful night our our house...I want to extend a heartfelt thank you to those who have left us messages. You are right Suzanne, just what does it take to drop on my head to not allow Lisa to have this surgery in Charlotte. She can’t go through the rest of her life leaking, so she MUST have surgery...

I am so incredibly tired, so I will sign off, I just wanted to say THANK YOU for all of the wonderful prayers and supportive comments and care for our family. It means more than I can express. I also want to encourage you to have your home inspected for bats or any evidence there of. I would NOT wish anyone else to experience what we are enduring. I had no idea bat urine could erode the metal screens that are used to keep them out of your homes. Trust me the expense and pain of these shots should be avoided at all costs.




Friday, June 15, 2012 11:06 PM EST

I can’t go in to great detail right now, because I am too physically exhausted and emotionally sick and my fingers will barely type. It is a sad day when bats have more rights from the federal government, than the taxpayers they could be making ill.

I will share that tonight at 7:10 PM, Lisa’s hospitalization and surgery was once again canceled because of these nasty bats (we were at Rachel’s Jazz Performance) and I can’t help but wonder why, is there a reason she isn't supposed to have this surgery in Charlotte...sick doesn’t even come close to how I am feeling....


Friday, June 15, 2012 3:46 AM EST


I really want to Thank you all for your kind words of support and understanding just how scary this is. The young man who came out was very much by the book; however, he did have a kind heart and you could tell he was moved by my worry/concern and the incredible stress we are already under with Lisa's pending hospitalization. Because she wasn't home at the time of the exposure, he left her off of the report, so at least she will be spared the pain and us the expense of rabies shots for her should the HD deem we need them. Pete, Christian and I can refuse shots; however, they can force us by law to give them to David and Rachel, we have no choice. They could actually take the children away from us if the health department says they need shots and we refuse. I would have left Lisa at my Mom's; however, Lisa was missing me so much she really wanted to come home. She actually got in the van while I was loading it and wouldn't get back out, she just wanted to come home. Unless pest control can help us today, we might have to go to a hotel until Lisa is admitted to the hospital. Pete is going to call some pest control places as soon as he gets to work, since I have at least four hours of running this AM, and 3 more this PM, plus Rachel's concert. Lisa needs peace and calm before she goes in the hospital and my parents have NO room for us all to spend the night. I have such a deluge of emotions right now, I am sure none of this is making sense. Animal Control told us nearly 60percent of bats have rabies...may I just point out our families track record on weird, bizarre things...my mind is reeling from all of the facts I have learned about bats and I THOUGHT I knew a lot about them after taking classes at the science centers with the children and studying them with the children over the years......yes I was naive....


Thursday, June 14, 2012 10:47 PM EST


Rachel did wonderfully well at her audition and IS in camp thanks to the kindness of friends. Rachel is having fun and she is playing with some fine, young musicians. VERY exciting! I am making the 90 minute roundtrip journey twice a day.

In addition, Lisa has had four MD appts, as well as new PT and Speech re-evaluations and I have been leaving at 8 AM, getting back home well after 8 each night. David still has woodworking and Rachel still has guitar. Lisa spent Tuesday and Wednesday night with my parents’ however, she really wanted to come home tonight.

I have been trying to rearrange the entire next week of therapy appts and 8 MD appts...plus Rachel was the talent show winner and has 4H District Day three hours from home to represent the county next Friday and I can’t go, because Lisa will be in the hospital. She will be admitted to the hospital Father’s Day (sound familiar) and her surgery is scheduled for 8:30 AM Tuesday, June 19, in case you missed yesterday’s update.

We still don’t have results for Christian's MRI...they said they need someone else to read them. NO, I am not worried...what is the point, it will NOT change a thing. I DO want a hard copy of the report, I found out LIsa indeed had Parvo-19 during the last hospital stay and everyone was saying it was negative, except the PA who came in to see me. I didn’t believe her, I made her show me the results and indeed Lisa had a full blown outbreak of Parvo 19 during her hospital stay! And the next week our regular doc was still saying she was negative for Parvo 19 (on the words of another doctor). I had her pull a hard copy of the results and she was shocked! So yes, I want a hard copy of the MRI to verify with my own eyes any results they get. The children’s neuro is afraid it sounds like Christian is having seizures...she wants him to have an EEG. We need an adult neuro well versed in adult ADHD.

As if we didn’t have enough weirdness in our lives, I woke up last night/this morning (around 12:45...I went to bed at midnight) to a bat flying around our bedroom!! I laid there trying to figure out what was going on. I kept hearing something but couldn't see anything for about 20 minutes, then I saw a bat flying (I would have thought it was a bird if I hadn't seen a bat in the garage last week). I was/am freaked out and scared. I will not go into the details;however, we think it flew out the window Pete opened.

Fast forward to tonight, we called Animal Control. Per Animal Control “You should have called us last night when the bat was loose in the bedroom”...hello, I had no idea what to do last night! Pete found two more bats in the attic. They can’t go in the attic at all, we have to hire an exterminator to have them removed, pay to have the bat guano cleaned up and repair wherever they are getting in, it will NOT be cheap. Because we were “exposed” with a bat in our bedroom, EVERYBODY may be required to get rabies shots if the Health Department wants us to. Lisa might not have to, because she wasn’t here when it happened. THANK GOD we had Bandit’s rabies shots documentation and tags or he would have taken possession of him tonight. They could have euthanized him, per animal control! This is a NIGHTMARE! Really, when does the the bizarro stuff end???

---

Wednesday, June 13, 2012 10:35 PM EST

Lisa will be admitted to the hospital on Father's Day (yes, another holiday admission) for surgery on June 19. I know you will keep her in your prayers. THANK YOU!




Saturday, June 9, 2012 5:15 PM EST


Okay Long overdue medical update: Lisa NEEDS this fistula closed, she has been leaking far too much and it gets on her shirt and she thinks it smells horrible. I have extra bandages and shirts in the car but sometimes she leaks more than others and I run out of things...like I did Monday...honestly, four shirts SHOULD be enough...The decision was made Friday to get it scheduled; however, the surgeon was out of the office and not able to get us a date. It looks as if it will be either the week of June 18 or July 23...his next two times to operate...Praying for God to pick the right time...Lisa is very scared. I am trying to come up with some strategies to alleviate fear, worries and we have identified some. I need to replenish my “poke supply gifts,” little presents I give to her to bribe her following IV sticks and multiple blood draws. Pain isn’t fun, and definitely NOT to a child who has had more than her fair share. I have her GORGEOUS made with love hospital gowns freshly laundered and ready to pack...that made her smile. We are going to update and laminate her rules for the staff. I have requested an early OR time to prevent the hunger that has plagued her following her cardiac cath and last surgery. I will keep working on helping her express her feelings.

Lisa’s INR was WAY to high Monday (Greater than 7.5), Friday back on track...Lisa was down two pounds Monday and we think that is why it was so high and Friday she was up 1/2 pound. She really IS affected physically by the fluid retention...her BP was up at the hematologist, normal at the nephrologist and low at the neurologist...go figure...

We still don’t have results for Christian's MRI...they said hopefully Monday. The children’s neuro is afraid it sounds like seizures...she wants him to have an EEG. She suggested a local doc, of course he isn’t on our insurance ($75 co-pay, plus $10,000 deductible for tests, etc.)...hopefully he will be on Pete’s NEW insurance which was SUPPOSED to start June 1...still waiting...There is more; however you get the gist...

Now to some FUN news about Rachel: Thursday night when I was looking for music camps I came across another Jazz Camp that starts MONDAY! It has as one of it’s music educators THE Jamey Aebersold...if you know jazz, you know Jamey! Rachel had the pleasure of doing a workshop with him in February 2011. I contacted the director to see if it was too late to register (It wasn’t) and if they had any more scholarship money (they didn’t). I was thanking her for her time and reminding her that I knew her when she worked at CSA...and then it hit her, the student I was inquiring for was THE RACHEL...she KNOWS Rachel’s passion, work ethic, skill and talent and she wanted to make this happen for Rachel. She made a phone call to one of their patrons and all of a sudden we had 60 percent of the tuition. She is looking for more so Rachel can attend. In the meantime, Rachel had to audition today for placement. They do things a bit differently than Rachel’s regular Jazz Camp, they will have small ensemble groups/classes based on skill instead of A and B band. Rachel is a bit nervous because this is new; however, as it turns out their guitar teacher also teaches at Rachel’s regular Jazz Camp. He was also one of the judges today (Rachel did amazingly well). She is also worried we will not be able to come up with the balance of the camp fees...I told her to keep the faith! This is an INCREDIBLE opportunity, it just has to work out!

More accolades for Rachel: I am sure many of you have heard about the Kohl’s Cares Scholarship Program. Several people suggested I nominate the children and I had planned to, however, my Mom started the process for me (I was a little busy getting Lisa ready for the hospital). I had to do all of the work of providing info on their volunteer service, etc...it was actually a lot of work, since they are so involved. We received notice that Rachel was selected as a Store Winner Recipient. I was told that they were very impressed with David and Lisa as well; however, only one winner per household is allowed, no matter how qualified the other applicants are (I didn’t know that, I probably would have only submitted David, since this was his last year for eligibility). Rachel won a fifty dollar gift card to Kohl’s and she was so happy! They sent me a window cling to proclaim she was a winner, a publicity release and she will have her name published as a winner. They will be deciding the regional winner towards the end of June and they will win a $1,000 scholarship. I am sure it will not be Rachel, history shows those winners typically have raised money/funds for their volunteer effort. No matter, I am very proud of all three of them (actually all FOUR of them; however, I couldn’t nominate Christian). They were surprised, they had no idea we had nominated them. As David put it, “I don’t do it for the awards mom, I do it to help out.” I hope you don’t mind me bragging once again...but if I don’t share, you will not know all of the amazing things that happen! We are blessed!

On a weird note: Lisa and I were cuddling last night. I went out to the garage to get a diet coke (My BIG vice in life) and was dive-bombed by a bat! I nearly freaked out, scared me to death to have this thing flying erratically all around in my garage, in circles and ever closer to me as I tried to focus my eyes on what was casting shadows everywhere. I quickly slammed the door shut, freaking Lisa out because I had called out to Pete (who was in the other room and completely ignored me....he said he thought I was playing with Lisa...I made him go into the garage from OUTSIDE, I did not want the bat in my house! Thankfully Pete got it out; however, Lisa and I needed some more cuddle time to unwind again! Now I don’t want to go in the garage, that was freaky! I don’t know when it got in there nor how long it had been there.

I am certain I am forgetting SOMETHING, but I tried not to. I truly appreciate those who asked for the link to see/hear the girls play and those who let me know their thoughts. If you want the ballet link for Lisa and jazz link for Rachel let me know. I tried to respond to everyone who asked. If I DIDN’T let me know. If you didn’t let me know how you liked the links, PLEASE do :o) Also, PLEASE remember I am FAR behind on emails, I am NOT ignoring you! Call me if you need me!!

---

Wednesday, June 6, 2012 4:29 AM EST

Thanks to all who asked for the youtube videos, I hope you enjoyed them as much as I do! I also have Lisa's dance recital on video if you want to see it, just leave a GB comment or email.

Christian's MRI is this AM, I ask you to please keep him in prayer. I NEED for Christian's MRI and tests to come back okay. His CBC and metabolic panel were fine, which was a blessing...of course, I expected them to be...which reminds me, I need to get a copy to make sure the docs haven't made a mistake, more on that later...


Tuesday, June 5, 2012 3:29 AM EST

My girls were AMAZING in all of their performances on Saturday. I didn't take any pictures; however, I took lots of videos! The venue they played in wasn't the best, for some reason they had not procured the theaters they typically use. They played in the basement of a church and while sound and lighting left a LOT to be desired I loved every minute. One gentleman even asked them both for their autographs, although he didn't ask anybody else. It made this bragging mom swell with pride! Lisa also did a wonderful job at her dance recital, she was tired, but happy. I am uploading videos to youtube to share. If you would like to see Lisa’s singing debut and Rachel Rocking the House with the adult band, leave me a message in the guestbook with your email or shoot me an email and I will send the link (but will not be able to email much else, I again have over 300 plus emails. If you need a timely answer to anything PLEASE call my home phone! I honestly can’t do any better than that). Keep in mind as you view them that Lisa JUST turned 9 in March and has a plethora of medical problems, INCLUDING a LEAKING hole in her stomach! If you want to see the dance video and Rachel’s jazz video once I have them both uploaded I will send those IF you have left me a guestbook message OR a comment on the youtube site. Yes, I am asking for something in return this time for sharing my talented daughters, I like to know who is viewing.

Once again I thank all of you for the wonderful birthday wishes for Rachel. Lisa and Carol, Thank you both for your gifts as well! Also, Thank you to Pete’s and my family for her gifts. Proper thank yous’ ARE forthcoming, this is just easier than individual emails to let you know they arrived. The only present Rachel asked for her birthday was steak...I don’t know many children, other than my own, that think meat is a gift. She also had an ice cream birthday cake, she only likes them and red velvet cake.

Christian was at her beck and call. David made her a gorgeous multi guitar stand. He has another project in the works for her as well; however, with Lisa being in the hospital and Memorial Day, it isn’t finished...but soon. Lisa made up a song for her and made her a guitar. It was a wonderful day...I hope you enjoy the pictures. The picture of Lisa hugging Rachel's neck with her guitar is going to be the cover of their first album, according to Rachel...You will all be able to say you knew them when...

---

Tuesday, June 5, 2012 3:29 AM EST

My girls were AMAZING in all of their performances on Saturday. I didn't take any pictures; however, I took lots of videos! The venue they played in wasn't the best, for some reason they had not procured the theaters they typically use. They played in the basement of a church and while sound and lighting left a LOT to be desired I loved every minute. One gentleman even asked them both for their autographs, although he didn't ask anybody else. It made this bragging mom swell with pride! Lisa also did a wonderful job at her dance recital, she was tired, but happy. I am uploading videos to youtube to share. If you would like to see Lisa’s singing debut and Rachel Rocking the House with the adult band, leave me a message in the guestbook with your email or shoot me an email and I will send the link (but will not be able to email much else, I again have over 300 plus emails. If you need a timely answer to anything PLEASE call my home phone! I honestly can’t do any better than that). Keep in mind as you view them that Lisa JUST turned 9 in March and has a plethora of medical problems, INCLUDING a LEAKING hole in her stomach! If you want to see the dance video and Rachel’s jazz video once I have them both uploaded I will send those IF you have left me a guestbook message OR a comment on the youtube site. Yes, I am asking for something in return this time for sharing my talented daughters, I like to know who is viewing.

Once again I thank all of you for the wonderful birthday wishes for Rachel. Lisa and Carol, Thank you both for your gifts as well! Also, Thank you to Pete’s and my family for her gifts. Proper thank yous’ ARE forthcoming, this is just easier than individual emails to let you know they arrived. The only present Rachel asked for her birthday was steak...I don’t know many children, other than my own, that think meat is a gift. She also had an ice cream birthday cake, she only likes them and red velvet cake.

Christian was at her beck and call. David made her a gorgeous multi guitar stand. He has another project in the works for her as well; however, with Lisa being in the hospital and Memorial Day, it isn’t finished...but soon. Lisa made up a song for her and made her a guitar. It was a wonderful day...I hope you enjoy the pictures. The picture of Lisa hugging Rachel's neck with her guitar is going to be the cover of their first album, according to Rachel...You will all be able to say you knew them when...

---

Friday, June 1, 2012 11:47 AM EST

It has been another week full of doctors. Christian's MD wants him to see a neurologist and have an MRI in view of some disturbing symptoms and the family history. Lisa is still leaking of course.

The weekend will be busy. SUNDAY is Rachel's Birthday!!! Tomorrow is the Rock and Blues Performathon with Community School of the Arts. Lisa will be singing and Rachel will be performing with her instructor, then her Jazz ensemble and in the afternoon she will be playing lead for the adult band...Lisa also has her dance recital in the afternoon, so I have NO idea if I will be able to see Rachel play with the adult,s I sure hope so...if only I could clone myself. Since I CAN"T I will give you another Disney Update!



We left David, Rachel and Pete at the RNRC and headed to The Great Movie Ride, where we were told they were closed...and they didn’t know for how long.... Christian and I decided to just start walking towards Star Tours and see where we landed. As we were walking the lady in front of the American Idol auditions saw Lisa and came up to us to tell me how beautiful she was. We were chatting and she asked Lisa about her wish. Lisa told her that she had wished to be famous at Disney. The lady asked her if she would like to audition for AI...Lisa said no. Then she said you get to sing...Lisa said yes! They made it clear she was TOO young (You MUST be 14) to sing in the actual show; however, they would give her the AI “experience.” First, she had her audition out on the street and after the “talent scout” heard her, she told her she really needed to come back and let the producers see her. We were brought back to a special queue for those who have an audition time. They took us right back, minimal waiting. This queue leads to the audition rooms and to the backstage areas of the theater. Next, we watched a pre-audition video welcome. We were next taken in to a VERY small audition room for Lisa to perform a cappella for the Disney casting director. Lisa began singing, the problem was, she didn’t know all the words...to ...wait for it...Moondance...which didn’t stop Lisa, she made them up as she went along, (much like they do on AI). The casting director asked Lisa if she knew anything else and Lisa sang Stormy Monday, much the same way. The director’s mouth fell open as she sang, she couldn't believe this eight year old girl was belting out these songs. She told Lisa she thought that she would have sang something really quiet and 8 year old sounding, Lisa started laughing and said, so you mean like this? She sang Once Upon a Dream. I do have all of this on video tape, Big Brother Christian was taping the entire time for me! The casting director provides feedback and coaching on the performance, then decides whether the performer moves to the next level...she told Lisa she really wished she could put Lisa on stage she was better than most of the singers she had heard that morning. She walked us to another area where people were practicing for their big debuts later that day. She had several people come over to listen to LIsa and the people who were practicing stopped and came to watch/listen. Lisa was smiling ear to ear and simply LOVED that they enjoyed her voice. One of the girls who was performing later in the show told her she was actually glad they wouldn’t let Lisa sing, she wouldn’t want to to go up against her. That was a very sweet thing for her to say and made Lisa feel happy. Lisa left the AI Experience with a happy heart, a button saying she auditioned and the directors words ringing in her ears that she needed to try out for the REAL AI in 7 more years...

Pete called as we were leaving and they met us in front of Star Tours, where we enjoyed the new ride very much....I don’t have a lot to say, it was a good ride...we had ADRS for SCI-FI for a late lunch...we have wanted to eat here forever, just to try it. We checked in and they told us there was a 15 minute wait. We all took the opportunity to sit and relax, cool off and take turns going to the rest room. We also did a little window shopping. FORTY-FIVE minutes later they STILL hadn’t taken us in and there were TWO parties waiting in front of us. We were all recuperated after hydrating with the water bottles we brought. Lisa wanted to go to the Great Movie Ride and that is what we did...Leaving Sci-Fi far behind. We got the Western show, which we rarely do. Loved it, as always! We came out and everyone was STARVING! David wanted a chocolate frozen banana and everybody else wanted a pretzel. The cart at DHS had exactly TWO pretzels...we ate those and were going in search of something else to eat, when somebody suggested we pop over to Epcot to eat around the World. So that is what we decided to do, sounded good to all of us. Was this the correct choice? Stay tuned to find out!

The last pics are some goofy pictures of the kids having their snack....

---

Monday, May 28, 2012 9:21 PM EST

I hope you have had a marvelous weekend and remembered the reason we celebrate Memorial Day. Thank a veteran and those who currently serve, as well as their families. They pay the ultimate price and some os us suffer daily as a result of that service.

You might remember that we had to replace both of our air conditioning units last year to the tune of $12,000 plus. We should be good for A/C this year, right? It hasn’t even been a year yet...but last night Pete noticed a leak in the hallway, and our light fixture was FULL of water...the A/C was leaking and we had no idea why. They came out today and discovered one of the pipes had cracked and caused lots of water damage to our ceiling as well as damage to our lights. All I could think was PRAISE GOD it didn't spark a fire! They have to let things dry out and then return to repair the damage...just what I need...

We have lots of appointments tomorrow, the MD offices were closed today: Three MDs plus the dentist and Lisa has ballet and Rachel has guitar and jazz ensemble...

Enough about life, how about some more about our magical trip???

We left the Castle of Miracles and headed to the Disney Hollywood Studios. That was Lisa’s choice for her first Disney Park, because as she said....”After all, I am famous!” We drove onward and soon we were seeing the signs that we were drawing closer!

We were SO excited! In spite of the fact we missed rope drop, the Handicap Parking was not TOO terribly full. I must admit, I think parking at the Studios is the BEST. We went in and finally made our way through security (always an adventure, depending on who is checking bags...and people are SO rude when you are pushing a wheelchair, they literally run to jump in front of you).

We stopped for a few Photopass pictures. As aprt of your MAW trip, each wish family is given a FREE photopass CD and we definitely made great use of ours all week.

We went directly back to Toy Story Mania, I have been eager to try this ride out since it was built and I must say, we were loaded quite quickly, with only a short wait.

I know many love this ride...I was not impressed, I am sorry to say...maybe I need to ride it again since I now know what to expect; however, I love the Buzz Lightyear ride and I found this to be NOTHING like that... The constant slamming around of the cars worried me with Lisa and the way you shot the guns was not “natural” to me. We exited the ride and found ourselves directly in front of the Meet and Greet for Buzz and Woody! We are HUGE Toy Story fans and were so excited! The very kind CM escorted us right in to see them and I must say, the family that was next in line was completely gracious and kind. I think you can actually see them in a few of our pictures. You all know, me, I take TONS of pictures and have a difficult time deciding what to post...throw in the photopass pics...well, this update has a lot! I make no apologies, just enjoy if you want to...

Look how much Buzz LOVES Christian’s shirt! All of our shirts and Lisa’s costume was made by VERY kind folks and friends.

We left the fun with Buzz and Woody and went straight to Beauty and the Beast...Lisa was SO eager to see this show! The CM out front told us it didn’t start until 11:30, but we must return by 11 AM to secure wheelchair seating. NO problem, Thank you! It was just a little after 10 AM, so we headed over to TOT...our favorite. Now, I let Lisa ride this ONCE when she was much younger and she loved it! I nearly had heart failure myself, after she was strapped in and the entire time we were on I was praying to God to keep her safe and if He let us off with her safely intact I would never let her ride again, unless I could find out the amount of G-Force the ride had. That is her only limiting factor on rides, it MUST be low G-forces! (which leaves RnRC and Mission Space, a hugely BORING “ride” in my opinion, off our lists, their G-forces are 4). As we approached ToT the most incredibly kind CM with the brightest of smiles was standing at FP (we were going to get some for later). She invited us right in and I explained Lisa and I would not ride due to the G-Forces. She said no problem, Pete, Christian, David and Rachel could ride and Lisa and I could hang out with her if we wanted..sounded cool to me. She got them all settled and taken right in and took us to a very special area in ToT. Now, I have been sworn to secrecy on some of it and I will not divulge all that happened to Lisa and I ...but lets just say it was THE most cool thing I will ever have the opportunity to do at ToT! Lisa and I were escorted to a room where we could view each and every car simultaneously and there were at any one time at least two different people watching everything that is going on at ALL times. They told me while we were watching that anywhere at Disney you think you are alone, you can BELIEVE at least two sets of eyes ARE watching you...made me think what was going on in the bathroom! We actually got to watch Pete and the children take THEIR rides, it was so cool! I was NOT allowed to take any photos, which is why I had my camera tucked away...as we were watching, our Fairy Cast Member came back with the news that the G Forces for ToT were FINE for Lisa and would we like to ride??? Lisa was ecstatic. Now I was cognizant of the time we had to be back at Beauty and the Beast, and we had plenty of time. We had so much fun and Lisa was so happy she could ride and she felt great. When we were unloaded they wanted to let Lisa ride again. I explained we had to be back at the show by 11 AM and they assured me it would be NO problem, they would call over and tell them we would be there...so we rode again and had a BLAST! They wanted to take her again! I told them we would be back following the show.

As we were heading back to the show, my phone rang. It was Morgan, my friend’s daughter. We were chatting as we arrived back at the theater. The time had just turned 11:02...The CM (Cast Member) that told us to be back at 11 started to berate me for being late. Morgan, who is a manager at Downtown Disney asked me what was going on. I told her I was being chastised by the CM for “being late”...he just kept on and on, even after I apologized and told him that the kind folks at ToT had called ahead to explain and we were told it was okay...he just kept on chastising me...”11 o’clock mean 11 o’clock, NOT 11:02”...I honestly couldn’t believe it. As our “punishment” the boys weren’t allowed to sit with us as a family, they had to sit two rows behind us. They wanted Rachel to sit back there as well; however, I needed her with me.

The nicest of ladies seated us and told us Lisa would be the child at the end of the show that the prince would give the rose to. I was SO incredibly excited for her! We had tried several times on our last trip for that child to be her and she was never picked, in spite of the fact that at both shows she was the only one dressed as Belle. This really was a dream come true. While we were waiting, a very nice lady came over to chat with me. She wanted to see Lisa’s Autograph book. which was specially made. She asked if she could take it back to show Belle, then she whispered to me she knew once Belle saw it she and the other cast members would want to meet Lisa...I was ecstatic! That was a HUGE wish of mine for Lisa! We waited for twenty more minutes and the show started and was just as magical as always...we LOVE this show! The show was coming to a conclusion and Belle and The Prince concluded their dance, then they both came to the edge of the stage to present Lisa with a “stuffed” rose...she was beyond excited and happy to have been chosen! The Prince and Belle waved at her multiple times after she sat back down. We had been told to wait after the show for them to assemble and they would come back for us. The kind lady came back and told us they would not be able to see Lisa after all and handed us the autograph book...already signed. Lisa would have preferred to wait and have Belle sign the book when we had breakfast at the castle, but oh well, it was already done. In spite of my disappointment for her, we STILL had a wonderful, magical time. As we left, the cast member who berated me apologized and was in a MUCH more jovial mood. Morgan had made a call to the manager at DHS and the CM was on his BEST behavior. It goes to show you never know who is on the other end of a phone when you start reprimanding someone....

We left Beauty and the Beast and went BACK to the Tower of Terror. Our awesome lady was no longer at her post; however, a nice lady sent us up the back way again...we waited our turn and rode again...and we came down to this funny guy who just LOVED Lisa’s laugh and he sent us back to ride again...TWICE! He was joking around with Lisa in his best ToT voice and attitude He was so much fun and I had to get a picture of him with Lisa.

We left there and everyone wanted to ride RnRC...Lisa knows she isn’t allowed to because of her heart, so she and I decided to head to The Great Movie Ride=TGMR, one of our FAVORITES! Christian LOVES RnRC; however, this trip was all about Lisa, so he decided he wanted to go with us instead. Pete, David and Rachel went to ride RnRC and we headed to TGMR....

---

Wednesday, May 23, 2012 9:39 PM EST

If you missed my Medical update Monday, please click on Journal History.

I need to get this show on the road for my Trip Report about Lisa’s amazing Make a Wish trip!

Our fourth day was Sunday and we were excited to FINALLY be going to a Disney Park. We chose The Disney Studios, because as Lisa said, she WAS famous! She wore her BEAUTIFUL Belle dress that my Florida Friend, Karen made for her and it WAS gorgeous! Lisa looked beautiful. The rest of us had customs to wear, which was FUN!

We started off with a delicious breakfast at the House of Hearts and then proceeded to the Castle of Miracles so Lisa could make her star. This was so special to her, we were given a star at check-in and told to not forget to do this before we left (along with a lot of other information that really would have been jumbled up in y head had I not been haunting the boards for MONTHS for information! EVERY wish child that has ever stayed at GKTW has a star in the Castle and it truly is overwhelming to see how many ill children have benefited from a 6 night stay at GKTW! It renews your spirit and feeds your soul.

For those who DON”T know the Star Story:
Upon arriving at the Village each of our Wish Children receives a golden star along with an invitation from the Star Fairy to bring the star to our Enchanted Castle of Miracles.* Once there the children sit at a mushroom table that appears to have grown right through the Castle floor.* They write their name on the star, close their eyes, make one very special wish, and then place the star in the Star Fairy’s wooden chest.* With animation, twinkling lights, and pure magic the star disappears from the chest with a promise that the Star Fairy will gather up all of the stars each day, capturing all of the treasured memories the children have made, and place them in the Castle sky that night.

As soon as the next day the children, along with their families, may return to the castle to locate their star, knowing that they now have a permanent place in the Village and the kind folks at GKTW hearts.

The Castle sky is home to tens of thousands of special stars. Because the star program was proven to be an incredibly powerful and moving experience for the families, a breathtaking addition to the Castle of Miracles was built, shortly before Lisa’s wish trip, called the Star Tower, that will allow GKTW to continue this heartwarming tradition for the next twenty years for ALL of their special WISH children!*

Lisa arrived and was seated on the Mushroom chair to write her name on her star. Next she took it to the star box and placed it inside and the star fairly appeared on a screen and flitted around to three different TV monitors as she gathered her magic to scoop up all of LIsa’s dreams and capture them to put high into the BRAND NEW STAR TOWER!!!! You will have to wait until later to see the pictures of her star high in the sky; however, it is EXTREMELY cool the way they locate it for a wish child when they come back to see it!

Next we went over to a big, whimsical tree where we saw an owl sleeping. Lisa pushed a button to wake him up and he introduced himself as Hermes the Owl.
He told us a story of the Dream Pillow that all children under 18 are given as a special gift. (Christian was a great sport about all of the things he was “too old” to participate in. He was happy to be there with his sister). As Hermes explained, With some love, some luck, a wish and a kiss, the pillow tree will provide children at GKTW a memorable experience. At the Pillow Tree each child will be guided by Hermes the Owl, the virtual caretaker, to create their very-own "sweet dreams" pillow. The pocket is a place for them to store their hopes and wishes, if they chose to write them down or a place to carry things that they love. Hermes flew up to the top of the tree and told Lisa she had to shake the tree until it gave her the children’s pillows. As you can see by the pictures she was VERY determined to get the pillows and she kept shaking and pulling and tugging and shaking. I actually had to get her to slow down it was taking them so long to produce the pillows! Hermes told her to keep pulling, to pull harder, etc. She was getting flushed and winded from the entire process. FINALLY the pillows arrived and David, Rachel and Lisa each had a lovely pillow to snuggle. If I EVER learn to sew, that is one project I would LOVE to help with, making the pillowcases for GKTW. It is a worthwhile project.

After the pillows were made, we went to the Wishing well and made several wishes...of course, you don’t need ANY money while staying at GKTW, they even provided the pennies to make wishes! They truly have thought of every detail! We played around with the different activities, a mirror that shows all of look into its depth their royal side as well as thrones for all royalty to enjoy. We had a wonderful leisurely visit in the Castle of Miracles and then it was time to leave for Disney Hollywood Studios!!

---

Monday, May 21, 2012 7:23 PM EST

Lisa does not/did not have parvo-19, ie: fifth’s disease or as Lisa said, she was NOT toxic! Dr. B, our wonderful hematologist wants us to wait until summer to schedule the surgery again (which is just around the corner). As she says she is praying hard the leakage WILL stop. I told her that was what we and SO many others across the country are praying for...but the Surgeon is adamant Lisa will not stop leaking on her own. As Dr. B (have I mentioned lately how much I LOVE this lady) stated “Doctors don’t know everything.” My dear Dr. B was told years ago when she was quite ill and they didn’t know why (after first not believing she was sick) that she would never work again...she is one of the hardest working, dedicated doctors I know! don’t have the results of the CBC, I forgot to get them! We had waited so long, I just wanted to get home before we had to go again.


Saturday, May 19, 2012 3:23 PM EST

I have had a lot of "medical" stuff to post lately; I have more I could say...BUT... I want to talk more about our amazing Make a Wish trip so here you go! There are LOTS of pics, I hope you enjoy.

After Carol and Ernie had to leave us, we gave Megan and Lisa the grand tour of our incredible Villa. It was time to dress for dinner. Rachel and Lisa had each planned on wearing one of their Big Give skirts (friends made the girls some custom clothes) to dinner...Rachel pulled out all of her skirts and let Megan have first choice, so that they could all be “dressed up.” (Don't you just LOVE Megan's cupcake shirt, it was her's). They were getting along just like sisters. We all walked over to the House of Hearts to get the ladies their meal tickets, then headed to the Gingerbread House for a delicious dinner.


We enjoyed a wonderful meal, full of great conversation and food. After dinner we headed out to see what was going on at the Village, it was Mayor Clayton’s birthday!

We took a few spins on the carousel, and when we got off the ride, we found some clowns making balloon animals and playing with puppets.

As you can see we were all having a GREAT time and then it happened...I asked Rachel where her braces were. She has the removable Invisalign braces and had only had them 6 weeks at that point in time and was not yet diligent about keeping up with them. We were using the wonderful toiletry bag Cheryl (aboveh2o) sent Rachel as her braces bag and we would hook it on the handle of Lisa’s W/C to ensure she always had it with her. As she hugged me I realized they weren’t in her mouth and when I asked her where they were she got this panicked look in her eyes. Instead of putting them in the bag (which was sitting beside Lisa at the dinner table hanging on her wheelchair) she put them on a napkin. That was one thing Pete and I had stressed over and over for her never to do, because my Niece had thrown away her retainer that way. Pete, Christian and Rachel all ran back in to the Gingerbread House and low and behold even after half an hour, they were just getting around to cleaning off our table and the braces were still there, Praise God! That should have been the end of it, right??? Not for my darling teenager, who had an attitude, because she thought she was going to be in big trouble for being irresponsible with her braces. I decided I was going to have a pleasant evening, which wasn’t easy for a while with the way she was feeling.

Everyone got some ice cream except for Rachel and I and we took a few pics. While I sat with Rachel, Pete, Lisa B and the other children went over to the Castle of Miracles...which will take your breath away when you see the sheer number of truly ill children GKTW has helped. I am crying as I type this, it hits you... the magnitude of pain so many families have endured, which is the price of admission to stay at GKTW for that one time stay of 6 nights of bliss...where your life is transformed by a plethora of people...it is heartbreaking, knowing not every child will make it...it is bittersweet knowing you can never have this experience of staying in a Villa again...plenty of people liked to tell us that too...It actually made Lisa cry several times as she thought of it...But back to my story...

Everyone came back and Rachel was STILL not ready to join the fun, so she and I sat for a bit longer...then I took her to Pete and told him I was going to have some fun. They sat for a good long while and finally Rachel was feeling well enough to join us. In the meantime, we had been playing with the therapy dogs, the children were having snow cones and cotton candy and we were ready for more fun!

Some may wonder WHY I included the part about Rachel...to remind everyone that just because you are on a wish trip (or any trip), doesn’t mean everything is going to go smoothly! How you choose to deal with it is what counts. Plus, I have a good friend who needs to know she isn’t the only one whose child can get grumpy! AND Rachel is missing from some of the pictures.

Miss Merry, Mayor Clayton's wife, had joined the party and there was some music and dancing going on. Then they told us to go in Julie’s Safari Theater to see the Movie, The Big Surprise...for some reason, we all found it a bit creepy/boring...It was also around this time Lisa spilled her snow cone on her shirt and she did NOT want to meet Mayor Clayton in her dirty clothes. Pete ran back to our villa (we truly DID have an ideal location) and got her another shirt and I took Lisa in the bathroom to change.

We went back outside to do even more dancing as we waited for the “Surprise” to happen. Suddenly the Big Man himself came barreling in, driving his Bunny Mobile! Mayor Clayton jumped up on stage and they asked for anyone who was celebrating an October Birthday to come on up. David refused to go, so they invited Lisa to take his place. She went and answered their questions about David, to his chagrin. After we sang happy birthday to everyone there was even more dancing, and as you see the girls were having a blast. David went over to the Amberville Train Station to hang out and Christian stayed with us. I will say, this was our least favorite party and if you had to miss one, this night would be my recommendation.

We all went over to the Train Station to find David and take a train ride...and there wasn’t anyone to run the train. Lisa B and Christian went in search of someone and they came back to take us and the RUDEST group of people, children AND adults ran ahead of us pushing to get on before us. We waited for them to return and took a ride but we really needed to leave, we had to be home by 9 PM. We hugged Megan and Lisa good-bye and sprinted back to our villa, leaving the ladies at the House of Hearts waiting on their Taxi. In spite of the minor irritations of the evening, we STILL had a great time, as I am sure you can see from the pictures!

As I said, we made the mad dash for our cottage. Thank Goodness we had such an amazing location! The girls jumped in to their jammies (we didn’t have any cute Disney ones; however, they were comfy and I had the washing machine to keep them clean). Just as they were pulling them on we heard a knock at the door. Ms. Merry, Mayor Clayton’s wife was coming to tuck the girls into bed! Any child at GKTW can sign up for ONE night to be tucked in by either Ms. Merry or Mayor Clayton. The girls had been looking forward to this for a while! Lisa was quivering she was so excited. Ms. Merry followed the girls in to their room and she gave them each a puppet (horse). She said prayers with them and tucked them in and then wanted to tuck someone else in. The boys politely declined and then she wanted to tuck ME in...so she and I crawled in bed together, which cracked the children up. Pete calls me Bunny (I will NOT respond to anyone else calling me that). The girls were not going to get out of bed since she had put them there; however, we all called for them to come back over with us and they did.Everybody but Pete piled into the bed...it was a great moment caught on videotape! The time flew quickly and she could only stay for a few minutes, there were lots of other children to put to bed, so we said goodnight and off she went. We were all riled up, so we ordered pizza, of course! It took TWO hours to bring it and we never did get our sodas or waters that night. The girls fell asleep before they came! While we were waiting LIsa opened her special present from my friend Sherri. It was a gorgeous Belle gown made of Satin. Lisa loved it. There was also a matching costume for Molly, complete with arm covers and a Jessie outfit for Molly. Lisa was thrilled, as you can see. She decided it was time for her jacuzzi time, then she went right to sleep, as did Rachel. The guys ate as much pizza as they could and put the leftovers in the fridge. I washed clothes and got things ready for the next day...we were FINALLY going to a DISNEY PARK!!!!

---

Friday, May 18, 2012 1:44 PM EST

I wanted to let you know they let us come home a few minutes ago. I will share more later, I am exhausted.



Friday, May 18, 2012 7:24 AM EST


Lisa's INR is 1.91....we need 2.0. They have NEVER let us go under 2.0....of course, they have not been very good on many things this go round, so we shall see....So many don't know the protocol....



Friday, May 18, 2012 12:44 AM EST

Please forgive my lack of updates, poor Lisa has been very emotional We are still in-patient and all she wants to do is go home. Isolation has been HORRIBLE for her and so unnecessary. I think the injustice of it all is what is getting to her. They avoid our room like the plague and it is hard to stay lying in a bed when you feel like playing. The room is too small to do anything other than go to the bathroom. Thank you for continuing to check in with us. Your messages are so kind and wonderful to see. Her INR Thursday was 1.59...at least we are headed in the right direction!



Wednesday, May 16, 2012 5:44 AM EST


Thank you all for the amazing good wishes, It is very uplifting to read your support. UNFORTUNATELY, Lisa is STILL on isolation, in spite of the dermatologists being certain it is a drug reaction. The hematologist decided they wanted to run the Parvo 19 test to “just be certain” and hospital protocol mandates she MUST remain in isolation for the protection of the staff. I’ve got news for them, IF she has a contagion, which the dermatologist doc was certain she DIDN’T, their total disregard of this rash for three days put not only themselves, but the entire pediatric and OR department at risk.

Lisa was DEVASTATED! There is a movie theater at the hospital and it is always closed when she is admitted. Last night it was open and since she didn’t have surgery, she was going to get to go...and because of the isolation ONCE AGAIN she missed out. Of course, they are avoiding our room like the plague, so she is even MORE isolated....at least the children are coming up today to see her and so are my parents. She cried and told them how bored she was as they drew more blood and they told her they had a toy for her (which they have never given her a toy). BIG SHOCK, they never brought her a toy.

She was so upset last night, crying and exhausted. This is SO out of character for her. I finally got her to tell me what was wrong and she said EVERY TIME I try to eat they come in and pull my tray away (that happened so many times yesterday I lost count) and they push and pull me every way they want to to look at me and never ask if they can and I have to hear EVERYTHING! that is said. I asked her what she would like to happen and she told me, so we wrote a list of four things to make up Lisa’s Rules. It was ALL in her own words and I was so proud of her for articulating her needs! I can’t remember it verbatim, but the gist is:
1) I don’t take long to eat so PLEASE let me finish my meal before you touch me.
2) Please ask me before you touch me, and tell me what you need and I will move however you need me to. It hurts me when you push me this way and that way.
3) Please remember I have to hear everything you say so PLEASE don’t say anything that is upsetting.
4) Please bring me toys!

I honestly think it is a great list! I posted a note on her board where we do her intake and output (she has to have urine and BMs tested due to the heparin...EVERYTHING that is done to her is degrading). I came home for a while last night to do some laundry and sleep in my bed for four hours and check on the children (who are doing an amazing job, THANK GOD for Christian). When I called Lisa last night (I promised her I would when I got home) she was so happy and felt empowered. I am her biggest advocate and when I am not there, she feels unsupported. Pete told me the night nurse came in, saw her note and asked to see her rules and Lisa LOVED that!

Today is a new day and we will see what it holds. I do want to address one thing. When I stated how I felt last week and my great concern for Lisa’s well being, let me be clear. Lisa had NO IDEA how I felt...none of the children did. In fact all four of them were concerned WE were upset the surgery was canceled (actually Pete wasn’t thrilled, but I was literally dancing down the hallway on the way back to the room I was so relieved). I am so used to NOT letting them know my fears and worries and this was no different. Lisa’s feelings were ALL her own, there was no projecting of mine. Our God is a faithful God and I didn’t come to be who I am overnight. I have been polished like a stone in an ocean bed for more years than Lisa has been alive. I am finally the person I always wanted to be, the one who relied on Him for everything.The adage, be careful what you wish for, you just might get it, is true. Of course, when I prayed for that, I had no idea how He would achieve it...and I will say this, as hard as the journey has been, I am glad HE is in control. I wouldn't have it any other way. Make NO MISTAKE, God saved Lisa’s life yesterday, of that I am One Hundred Percent certain. Your prayers and love ARE seeing her through and the gowns, her faithful prayer quilt, our prayer bunny (I need to share that with you), prayer shawls....ALL have blanketed us and we Thank you for that!

I am happy to say both Rachel, David and myself are ALL feeling much better, the roadblocks that were thrown up this past week have been coming down and we are thankful. I do realize SO many will not “Get” what I mean and that is okay! Just give God the glory and KNOW how much I appreciate you all! It was the prayers of so many United to lift and protect one little girl that saved her!




Tuesday, May 15, 2012 6:54 PM EST

THANK YOU for all of the wonderful messages of support!
This has been the most insane day with things changing rapidly. The dermatologist was just in (the one they said wouldn't be able to see us for several weeks). He is 100 percent sure Lisa is having a drug reaction to the omeprazole they put Lisa on for her gastric leaking...WHY have we waited three days for someone to figure this out...we are in a HOSPITAL for crying out loud! Lisa is now OFF of isolation...this is unbelievable....



Tuesday, May 15, 2012 5:44 PM EST

Why they postponed surgery:
Last week I became very concerned about Lisa’s surgery. Timing was NOT making me happy and I had a horrible, nagging feeling. I felt deep in my soul SOMETHING HORRIBLE was going to happen. I don’t know if I mentioned it here; however, those IRL heard nothing from me but how concerned I was. I sent an email to all of her physicians that were involved with this hospital stay/surgery. I had a list of concerns/questions, I had been feeling VERY nervous and out of sorts about this being done today. They all acquiesced that there was nothing to worry about and we would proceed as planned. You may recall that Thursday Lisa was sick, then Friday Rachel was. We had a plethora of things occurring, that I will not get in to...suffice it to say, I kept thinking we should postpone the surgery; however, the docs kept wanting to move forward. Even after we arrived on Sunday, there were huge red flags to me. The biggest occurred last night when LIsa told me that she thought she would die if she had the surgery now. I spent the better part of the night praying, then I FINALLY was able to post an update this AM, asking for prayer. As I waited for Lisa to wake up this morning, I fervently prayed for God to stop this surgery to intercede if this was not HIs timing. I was calm as we walked to the OR holding area. I answered two different nurses questions in reference to the rash. The anesthesiologist came in and said he had no worries abut the rash. The nurse anesthetist came in and said she had to defer to the MDs (because of Lisa’ heart, the team to put her to sleep is always huge). Everyone agreed that the rash was NOT a deal breaker and we would proceed. LIsa told me her IV was hurting...a lot. It is a blood draw IV, nothing was going in or out. I looked at her arm and noticed it was swollen. I brought it to everyones attention and no one cared, said they could barely see it was swollen. Then our surgeon walked in...he took one look at Lisa’s entire body covered in rash and her swollen arm and said absolutely not! Where no one else seemed to care that she obviously has SOMETHING going on, he wasn’t about to risk my daughter’s life to “proceed as planned.” THEN the anesthesiologist starts telling me how difficult a case he perceived Lisa to be with her severe pulmonary stenosis. PRIOR to postponing the case, he wasn’t worried about it at all! All I know is IF and WHEN this surgery is rescheduled, I have no intention of letting Mr. Lackadaisical put her to sleep. Yes, Lisa needs to have the surgery; however, as the surgeon said once he saw her, that it doesn’t have to be today! We are i the process of getting her coumadin level back to therapeutic limits and THEN we can exit the hospital and it will not be soon enough for me. I can’t BELIEVE no one told the surgeon about the rash! Even Pete forgot to tell him when he breezed by the room yesterday, I had been sitting in there ALL day with the exception of leaving for Rachel’s MD appt and we took Lisa out to the play-yard and THAT is when he showed up. When Pete came out and told me he stopped by I said did you tell him about the rash and he had not. We came in to try and find hie; however, he was gone and we were told that someone would have already told him...apparently not! I have even more respect for him than I did, he didn’t get paid for that time and he still erred on the side of my child’s health, {raise the Lord. I will not be surprised to discover this rash is one of those many “unknowns”...but I DO think it was God’s way of forcing them to stop the surgery. There are many who are disappointed it didn’t happen today...I am NOT one of them, it just reaffirmed my Mom’s intuition and instinct should always be followed.

So NOW we are Prisoners! After three days we have been LOCKED IN! In spite of asking repeatedly if we needed to be worried about Lisa’s rash being contagious or infectious OR if we should postpone surgery and hearing a resounding NO from everyone, they NOW have confined Lisa to her room...of course if she has fifth’s disease (also known as Parvo 19), it is NOT contagious once you see the rash.

We now must wait and see how long it takes for Lisa’s coumadin levels to become therapeutic...please pray it is not long! I am NOT upset over this postponement, Many do not understand why I am not upset or why I AM so relieved... I know God’s hands are alL in this and while I may not be explainINg it clearly enough for anyone else to UNDERSTAND...I get it, loud and clear. God IS faithful and he is in control, never doubt that!

One happy thing today, Lisa’s ballet teacher stopped by to see her and that was a treat. We were very thankful! She brought some gardenias from her garden and they make the room smell wonderful!

I thought I would share a few pics of Lisa in some her new gowns and out and about at the hospital...choosing which gown to wear has been difficult for her, since she loves them all...I will put two behind my back everyday and she will pick a hand and that is the one she wears for that day....

With Gov, the therapy dog.

























In the OR holding area this AM.
















Playing with her bed, UP in the air.













Tuesday, May 15, 2012 9:54 AM EST

I can’t go into details at the moment; however, God interceded and the surgery has been postponed. I am incredibly Thankful, something horrible was going to happen, of that I am certain! I will update more later. We are in the midst of things....


Tuesday, May 15, 2012 5:04 AM EST



I truly want to Thank You all for the most uplifting messages, they have meant the world to me. Lisa has enjoyed her new hospital gowns. I appreciate your support, your messages have been wonderful!

Lisa is scared...she actually told me last night how scared, she thinks she might die. That had me on edge as you can imagine and no matter how much I worked with her on those feelings, nothing would sway her worries. This is very atypical for her. We could use some prayers to that end and to calm my Mom nerves.

Rachel is not throwing up at the moment however, it is taking great effort This sickness has exacerbated her other chronic medical issues. We did see the MD yesterday thanks to Christian's wonderful support! My stomach is not as ill either, which is good, since it has been slightly uncomfortable (I don’t like to use the word painful there is true pain in the world and this isn’t it). As if that weren’t enough, Sweet David woke up yesterday with that weird head pain, nausea and the numb arms and feet, plus dizziness. As soon as Rachel’s MD appointment was over we went back home to check on him. He was feeling better; however he was still in his PJ’s which worried me.

Surgery is scheduled for 9 AM this morning. They should take Lisa down between 7:30 and 8:00 AM. I am dressed and waiting. Thankfully My little sweetie is asleep. So is Pete, but NOT for long! Lisa packed a little brown bag in her suitcase and when I opened it I found an apple, a banana and some crackers. She told me she was bringing food for after the surgery in case they forgot to feed her again or took too long...after her last cardiac cath AND her March surgery she was starving, so she wanted to be prepared!

Thank you once again for your amazing prayers and messages they ARE appreciated!

I will update you as soon as possible, I promise! Please remember I can only send one reminder per day that I have updated.

---

Tuesday, May 15, 2012 5:04 AM EST

I truly want to Thank You all for the most uplifting messages, they have meant the world to me. Lisa has enjoyed her new hospital gowns. I appreciate your support, your messages have been wonderful!

Lisa is scared...she actually told me last night how scared, she thinks she might die. That had me on edge as you can imagine and no matter how much I worked with her on those feelings, nothing would sway her worries. This is very atypical for her. We could use some prayers to that end and to calm my Mom nerves.

Rachel is not throwing up at the moment however, it is taking great effort This sickness has exacerbated her other chronic medical issues. We did see the MD yesterday thanks to Christian's wonderful support! My stomach is not as ill either, which is good, since it has been slightly uncomfortable (I don’t like to use the word painful there is true pain in the world and this isn’t it). As if that weren’t enough, Sweet David woke up yesterday with that weird head pain, nausea and the numb arms and feet, plus dizziness. As soon as Rachel’s MD appointment was over we went back home to check on him. He was feeling better; however he was still in his PJ’s which worried me.

Surgery is scheduled for 9 AM this morning. They should take Lisa down between 7:30 and 8:00 AM. I am dressed and waiting. Thankfully My little sweetie is asleep. So is Pete, but NOT for long! Lisa packed a little brown bag in her suitcase and when I opened it I found an apple, a banana and some crackers. She told me she was bringing food for after the surgery in case they forgot to feed her again or took too long...after her last cardiac cath AND her March surgery she was starving, so she wanted to be prepared!

Thank you once again for your amazing prayers and messages they ARE appreciated!

I will update you as soon as possible, I promise! Please remember I can only send one reminder per day that I have updated.

---

Tuesday, May 15, 2012 5:04 AM EST

I truly want to Thank You all for the most uplifting messages, they have meant the world to me. Lisa has enjoyed her new hospital gowns. I appreciate your support, your messages have been wonderful!

Lisa is scared...she actually told me last night how scared, she thinks she might die. That had me on edge as you can imagine and no matter how much I worked with her on those feelings, nothing would sway her worries. This is very atypical for her. We could use some prayers to that end and to calm my Mom nerves.

Rachel is not throwing up at the moment however, it is taking great effort This sickness has exacerbated her other chronic medical issues. We did see the MD yesterday thanks to Christian's wonderful support! My stomach is not as ill either, which is good, since it has been slightly uncomfortable (I don’t like to use the word painful there is true pain in the world and this isn’t it). As if that weren’t enough, Sweet David woke up yesterday with that weird head pain, nausea and the numb arms and feet, plus dizziness. As soon as Rachel’s MD appointment was over we went back home to check on him. He was feeling better; however he was still in his PJ’s which worried me.

Surgery is scheduled for 9 AM this morning. They should take Lisa down between 7:30 and 8:00 AM. I am dressed and waiting. Thankfully My little sweetie is asleep. So is Pete, but NOT for long! Lisa packed a little brown bag in her suitcase and when I opened it I found an apple, a banana and some crackers. She told me she was bringing food for after the surgery in case they forgot to feed her again or took too long...after her last cardiac cath AND her March surgery she was starving, so she wanted to be prepared!

Thank you once again for your amazing prayers and messages they ARE appreciated!

I will update you as soon as possible, I promise!

---

Sunday, May 13, 2012 8:58 PM EST

This has been a very tough day. Sweet Christian made me breakfast in bed before we had to go to the hospital. Lisa's fistula is making odd noises (it never has before and the nurses are stumped) and draining odd drainage and she has a spreading odd rash they are watching. Christian called me at 6:45 to tell me Rachel was vomiting. Pete has gone home for the night and we are passing the time, waiting on the next labs...Not my worst Mother's Day; however, not my best. We need prayer. I hope everyone else has had a great day, my heart is torn in two places tonight...On a happy note, some friends made Lisa some cute, girly hospital gowns..they re a HUGE hit!!!

Happy Mother's Day to all my friends and to my own sweet Mom and Mom-in-Law!

---

Thursday, May 10, 2012 8:49 PM EST

Lisa has NOT been well today, she and Rachel came in my room around 4:45 this AM (I was up) to tell me Lisa had vomited...not unusual, often her reflux acts up. As the day progressed, it seemed like more than reflux, but not a virus. It could be due to the hole in her stomach. I do not know if it will affect the surgery, the surgeons office told me today that it would NOT. Lisa will be admitted on Mother’s Day for her surgery May 15.

Other out of the ordinary things this week were Awards night for David for Aviation and Engineering...I am one proud Mom! I hope to post pics of that soon!

David is working out at the Museum today and Christian has a job interview!

Graduation Weekend Update below!

Christian's graduation weekend was amazing! We arrived for lunch Friday and David watched the girls at the student arcade while we enjoyed a delicious lunch and heard praise for our graduates. For me, it felt as if we came full-circle. We began part of our journey there in the Millis Center during the Presidential Scholarship weekend back in February, 2008 and we were at the conclusion of the journey May, 2012. I did laugh at the fact that while they were courting Christian, we were served personally hand-sliced prime rib and gourmet food on fine china, crystal goblets, real silver, linen napkins. Lunch on Saturday was served on disposable plates (the nicest I had ever seen, think melamine), plastic forks and spoons so nice we THOUGHT it was flatware at first, plastic cups and fancy paper napkins...and lunch was chicken. And YES, it WAS delicious...just ironic to me. We were thankful, because to my knowledge, most schools don't have things like that for their graduates and families. We were given a gift for each graduate and for the parents, of Nido Qubein (HPU's President) book of quotes. It was great to spend time with Christian once more, just the three of us. He left afterwards for his Class Photo and graduation rehearsal. We gathered the children. LIsa was not doing to well at this point it was exceptionally hot and she had not wanted to use her W/C. ONce we got the van cooled down she was feeling better. We stopped and got the children THEIR lunch and headed to the hotel. They allowed us to check in early and while they ate, Pete and I unpacked the car. I had just finished changing when Christian called, he was ready to be picked up. I went back to bring him to the hotel for awhile and Pete took David, Rachel and Lisa swimming. Christian had sent his swimsuit home the weekend before when we picked up most of his belongings. He and I sat and visited while we watched the children play. My parents and brother called, they were in town and staying at another hotel (ours was at capacity). They came and we all visited for awhile before heading back to our suite to visit some more.

Lisa had to rest , she was exhausted. My parents left and Rachel fell asleep. Lisa was watching TV. Pete and Christian were on their way back to Campus when they saw Pete's mom, brother and sister. They visited with us, while Pete took Christian back, he had plans with friends for his last night. We went out to dinner with Pete's family and enjoyed a delicious meal and good company. We went back to the hotel and Pete took the children back to the pool, while I organized for the next day. Graduation day was EARLY, we had breakfast and headed to the ceremony. In spite of telling us they would NOT have handicapped seating for W/C they did.

My family joined us (they had been seated elsewhere; however, when my Mom called I told her she should join us, she has her own health needs and this was a bit closer if she needed restrooms/shade, etc.
Pete's family joined us later as well, there was lots of seating available.

There was TONS of security, yet none of us were searched like I thought we would be. We were entertained with beautiful music as we waited and FINALLY it was time, the graduates began to process in...for thirty minutes. Just before the processional started three jets flew over head in formation....it was so cool!

Then the college president began to speak and the accapella groups led us in the National Anthem and as they concluded 2 F-18's flew over to salute our graduates.

There were more words of encouragement from Nido Qubein, he told the graduates that at the end of the ceremony they would receive their actual sheepskins in the student center along with a blanket. The blanket was not for them to keep themselves warm, but to give to the person who had supported them, encouraged them in their journey, believed in them and even forgiven them...I am typing this with tears streaming down my face, because I was sure it would be mine...and it is. Christian was quite emotional as he gave it to me and thanked me. He couldn't even wait until we got back to Charlotte, he HAD to give it to me asap, it meant that much to him. I of course love it and the symbolism behind it. 

The ceremony continued on, with awards to staff and retiring teachers (and Pete and I were caught on tape), Laura Bush spoke (she made Lisa sad, there was a child LB spoke about who didn't get to go to "Astroworld" and Lisa wants to know what happened to him (More to the story she told, I don't want to type, lol). The is twas time for why we were all here! First the graduates in the Master's Program graduated and then it was time for the Bachelor Degrees...Christian was very early on, due to his last name. I had already spotted him earlier in the crowd just as he saw me, so I could watch him the entire way. After all of the graduates had walked, they let an Eagle soar into the air symbolizing  “reaching to the skies and beyond."  Tassels were turned...Christian was GRADUATED!!!! I said 1 down, 3 to go! David was sad it wasn't him...he kept saying he still had to graduate from High School AND College.

My brother and parents went with us back to Christian's dorm so we could load some of his things, our car was full of suitcases and medical bags. We returned to Charlotte to a VERY full hose. Pete's family had gone on ahead of us all, so the house was opened and we stuffed MORE of Christian's things inside. We enjoyed a relaxing weekend of family, the girls entertained us with guitar and song,  I showed off many of David's projects and we all celebrated Christian! My parents returned on Sunday to have a celebration lunch of pizza and cake. It was a wonderful uplifting weekend. We are SO proud of him and all he has accomplished. Christian has a job interview tomorrow, wish him blessings in finding the job God wants him to have!!!

---

Friday, May 4, 2012 8:02 PM EST

We are in High Point for Christian’s graduation TOMORROW!!!! If you have noting else to do tomorrow starting at 9 AM EST, feel free to log on and watch LIVE!

Copy and paste if you would like to watch!

http://www.highpoint.edu/commencement/live.php


We have had our typical busy week with our usual MD appts. Lisa also saw a new orthopedic doctor Tuesday. She was diagnosed with functional scoliosis at a very young age and they watch it quite closely. It will be imperative as we go into puberty to have the best doctor on board for this, so we had to switch back to her first Orthopedic Doctor, which I liked very much; however, due to insurance, then her vascular surgeons preference, we have not gone back. FINALLY I got it back to him and in addition to her functional scoliosis (which is caused by her right leg being shorter than the left), he discovered she also has Thoracogenic Scoliosis, which is caused by her multiple Open Heart Surgeries. As if that wasn’t enough, her leg length discrepancy has increased slightly..0.2 cm more and we will be discussing arresting the growth in her left leg to allow her right leg to catch up...ummmm, not anywhere NEAR agreeing to that...

To cap my day Wednesday, we were at the MD appt before we went to the Hem/Onc clinic for Lisa’s labs and David’s IV iron...phone rings and it is the hospital wanting to make an appt for Lisa to come in prior to surgery to discuss the pre-surgical “stuff”. I told her she would be admitted two days prior to the surgery and they could do it then. She said, no they were trying to make it easier on the anesthesiologist...Witchy Woman here told them NO, THIS time they were going to make it easier for my daughter...YES! My Hematologist backed me up when we arrived! Sad news is Lisa has to be admitted on Mother’s Day (made her cry...my only concern is I KNOW how they staff on holidays...). She has to miss something very special GKTW asked us to do, her voice recital, her Tea Party, Rachel’s Scholarship recital and a birthday Party...it makes me sad what she is missing out on. They also began participating in Beads Of Courage at our hospital as of April 1. Lisa and David worked on theirs Wednesday. They will not go back through the past nine years for things, only giving one bead if you have ever had that particular ”thing” done...David’s strand was LONG (we concentrated mostly on Lisa’s, will catch his up next week)...but Lisa required three strands so far...I can only imagine how many they would have both had, if they had actually received what they “earned” the prior years...it really hit me hard to see it strung out like that...

But enough sadness...TOMORROW my first born graduates COLLEGE! I am incredibly proud of him!!! One down, three to go!!!

---

Tuesday, April 24, 2012 10:07 PM EST

David will see his neuro-ophthalmologist tomorrow and that is a relief for ALL of us. His neurologist has concern that his pseudotumor cerebrii symptoms are flaring.

The other consideration is whether or not this is just a different type migraine than what he typically has. She said many people in lead up to migraine can have a lot of neurologic type symptoms (imbalance, forgetfulness, inability to focus, even amnesia) during the part of migraine prior to headache that is called "cortical spreading depression," which is a spreading wave across the brain which fires things off and then dampens things down. This could explain all of his symptoms. When I googled it I didn’t like the sound of it. Her concern is whether he is having any permanent eye damage due to this pressure. She also thinks it might be time to recheck his pressure, this time with a sedated study under fluroscopic guidance. I will say he is slightly better today, which is a relief, in view of the news we had at the surgeons office.

We saw the surgeon for Lisa this AM. We liked him. He was personable and our hematologist, whom I respect, likes him very much. Lisa has a gastrocutaneous fistula that needs to be closed during an open surgical procedure. His biggest concerns are 1) infection because this is a “dirty” wound since it is open to the exterior world, 2) bleeding, due to the coumadin 3) that it will not “take” the first time and we will have to do it again. He was optimistic and said that he had not had that happen in many years; however, he had to be sure we understood that it WAS a complication.Honestly, we have no choice, Lisa can’t go through life leaking from her abdomen forever, it is setting her up for a LOT of problems, that we have been able to avoid thus far.

Lisa is a little sad today and exhausted, which is the reason I am able to update. She told me at 3 PM she was too tired to go to ballet. Rachel still has Guitar, jazz ensemble and also aviation for David, so responses to everyone will have to wait until later. I simply wanted to update you on the MD appts. As I typed her ballet teacher a note to explain Lisa’s absence I thought, no wonder this poor child is tired.We have had an exhaustive month since she was discharged from the hospital March 26. I just counted up and since her release she has had 42 MD appts, numerous blood tests, two special scans, an ECHO, EKG and special eye testing. Today was the icing on the cake. I honestly think it was just too much for her. She is lying in the recliner almost asleep. She was sad to not dance or see her friends, but she is simply worn out.

Timing...we know that the surgeon will not have hospital services until the week of May 14, so the surgery will be scheduled that week. That really messes up a lot of things we have planned, including a tea party for Lisa....I am so sad that she can’t just be a child...

Pete was able to go to the surgeon with me this AM, which relieved me greatly. His boss was very understanding and he worked through lunch to make up the time...poor thing, today is his birthday. We did not get home until 9:00 tonight...I DID make a Lasagna with some ground beef I had been saving and Lisa helped me bake a birthday cake, although we will not have them until tomorrow night when we can all eat/celebrate together...of course, this is far from the worst birthday he has ever had. At least no one is in the hospital...


FYI, Our emails are not coming through consistently. I know this, because David's Neuro emailed us and Pete received it at work; however, neither of us received it at home. I tell you this so you know you must CALL ME if there is anything I need to know, Please don't assume I received it. Thank you.


Saturday, April 21, 2012 10:17 PM EST

I want to share that today is my youngest “baby’s” birthday...Bandit turned FOUR!!!!! Many of you were with us through the dark days in January when they told us he would die and I have to say what a BLESSING it is to still have him with us to celebrate!

A very brief recap of our week: HOURS and HOURS at the MD offices with TONS of waiting this week. We spent four hours at the ophthalmologist office and that doesn’t count the hour round trip to get there. That was also the day we had scans for Lisa’s bones, two new docs that day, ballet, and Rachel performed at the 4H county wide meeting. More on that shortly as well.

Good medical news? The Bones and Stones doc does NOT think Lisa has anything wrong with her bones, He DOES think just what I have been saying for years...she is weak on that right side from her left sided stroke and she doesn't have the strength to catch herself, so when she falls her arm breaks, because it can’t hold her...and there isn’t a thing we can do about it. The pediatrician thinks her scoliosis has gotten worse, so we have a new referral to “THE” pediatric back doctor and HOPEFULLY he will also take over the care of following her leg length discrepancy, along with Lisa’s Vascular Surgeon. Suits me, we used to see him years ago until insurance changed and we have had so many Ortho docs I can’t even count them or remember them all... There were other things the Pediatrician wants addressed; however she felt Lisa’s eyes were fine. I really didn’t care what she said though, it had taken four months to get this appt. and we were going. It turned out to be a great thing we did, because Lisa is having convergence and it is at the beginning stages of causing problems, we will just do some eye muscle exercises and return in 8 weeks to see if we need to be more aggressive. She “couldn’t believe I caught it, most doctors would have missed it at this stage.” WHEN will doctors learn to listen to Mamas??? LIsa’s INR level was too low both Monday and Friday, we return this Monday to check it out and see if it has improved. In the meantime, Lisa is still leaking...we see the surgeon on Tuesday (It is also Pete’s birthday). There is other “stuff” but that was the main points for Lisa’s appts.

David...my big, strong David has not been well the past two days. He has had some dizziness (although he didn’t tell me until AFTER the fact) and some pretty severe headaches (possibly some of his migraines although he said it felt different). He didn’t go to woodworking today...in fact he didn’t even get dressed from his PJ’s, which told me a lot, he is meticulous/rigid in his self-care. We are scheduled to see his Neuro-Ophthalmologist on Wednesday (right in the middle of voice, I REALLY need a nanny). That relieves me, because if his pseudotumor is acting up, I want to know sooner rather than later!

Rachel performed Wednesday night for the CSA Board Meeting and all I can say is WHAT A HOUSE! It was GORGEOUS! We were supposed to be outside in the gardens, but the ONE night we needed it to not rain, it poured. As for Rachel...she was the star of the night. I didn’t realize it when they asked her to play, but she was. As the President of the Board said...we have had musicians play at Carnegie Hall, but never one at the House of Blues...until now. She and Lenny (her instructor) tore it up! They were amazing and one little guy who played violin that night told his parents he wanted to switch instruments. The mayor was there and made the rounds, I was too busy listening to my daughter to care. There was more, but that is for another day.

We weren’t supposed to hear back from todays Scholarship auditions until Monday night; however, as I was typing this update our phone rang...Rachel has once again been awarded the VERY Prestigious Andrew Bradford Scholarship which means she will have a full ride for music lessons for one calendar year (summer, winter, fall and spring) for hour long lessons!!!!! PLUS she will continue to be able to go to Jazz camp this summer and play with the Jazz ensemble. I am truly beyond ecstatic and humbled..she deserves this opportunity more than I can ever express and I am incredibly proud of her! Pete and I would never be able to give her this incredible gift on our own.

As if that weren’t enough...Rachel performed Thursday night at the 4H county Expressive Arts Celebration. (We live in Mecklenburg County; however, 4H is in Cabarrus County). She was the WINNER!!!! She is one of 2 acts that will represent Cabarrus County at the District Activity Day program in Fayetteville this June. The funny thing is, we didn’t tell Rachel she was playing for anything other than the pure pleasure of playing Thursday night...she was shocked when she found out they were being judged and they picked her as the winner. She needs new performance outfits. I need to find some more vests, her favorite thing to perform in...they look great over little graphic tees. I also found some more sequin shoes (red, blue, gold, silver, black); however I need to save a little money to buy them for her...we need more fedoras too...that has become her "look" when she plays and everyone who asks her to play now requests she wears "the look" when she performs...got to love it...maybe someday little girls will ask to wear "The Rachel"...and NOT mean a hairstyle from TV!

---

Tuesday, April 17, 2012 6:52 AM EST

If you missed any of the trip updates or the cardiology update, click on journal history to catch up.


This week has gotten off to a busy start. We have with some “unusual” things thrown in as well. Monday was two MD appts, plus labs, plus back and forth with the GI docs, they want us to see the surgeon, but that seems to be a production, so we shall see what happens. Today is two MD appts, David’s working out at the Aviation Museum, ballet, guitar lessons and jazz ensemble, Wednesday is two MD appts, Voice and Rachel is performing for an hour for the Board Meeting for the Community School of the Arts (I THINK it is two thirty minute sets, with an hour between for dinner. OUr mayor will also be in attendance), Thursday Lisa has her Scans to determine if she has any “bone” issues and if that might be why she is so prone to broken bones, as well as two NEW MD’s...The “Bones and Stones” guy and a specialist in pediatric Opthalmology, I have noticed some things for about four months and it took this long to get an appt. Praying it is nothing. We also have ballet and Rachel is performing for the 4H county wide meeting. Friday is a bit up in the air, I will tell you about it later. I hope you all have a blessed week and that everyone who needed prayer has been blessed.

I thought I would give you another installment of our Incredible trip, I hope you enjoy it.

Upon our landing at the airport, I found out our friends who were traveling up from Ocala to see us were waiting for us at the Village. We zoomed back to meet Carol and Ernie in person for the first time!! Carol felt like an old friend already, I just had to put a flesh and blood person with the kind person I already knew!

We parked and ran inside to meet our friends and head over to Katie’s Kitchen for another DELICIOUS lunch which we ate in the Ice Cream parlor. We had a marvelous time...and yes, everyone capped off their lunch with an ice cream cone (except me, 1/2 that chicken salad sandwich always made me feel FULL and it was SO yummy)! They also brought gifts for the children. For the life of me, I can’t find where Pete put the pics of the boys and their gifts, I am lucky to have the two of the girls, lol.

We left after lunch and went back to the village to change into bathing suits for the children, it was entirely too cold for us adults! Our friends were amazed at our gorgeous Villa and were so happy for us to FINALLY have been able to make this long-awaited trip! We headed over to the big pool (there are two at GKTW) and sat around talking while the children had a ball playing. I got a call from my friend Lisa, they were on their way over to the pool, they had arrived at the House of Hearts!

We were happy to have Lisa and Megan join us at the Village. The kids had a blast playing and we had a great time talking. Lisa had brought us a gift she made, a gorgeous scrapbook, and NOW I need to get some pics developed so I can have my first real scrapbook! Someday...add it to my list...

As you can see from the photos I posted (be glad, I had LOTS more), they all had a blast together. Lisa had to sit out a few times and get warm or rest...but Christian went over and got her an ice cream cone and as you see, she was just fine! Rachel and Megan had to get one too, once they saw Lisa enjoying hers. David and Christian had fun swimming and after a l while, David decided he needed to go fishing...they supplied everything he needed and he was in heaven. The afternoon flew by MUCH too fast, but we were Thankful to have spent the day with good friends. We headed back to the Villa to say goodbye to Ernie and Carol and took Lisa and Megan inside to discover the beauty of our home away from home.

---

Thursday, April 12, 2012 2:50 PM EST

When I last updated our trip report, Rachel and Pete had just rocked the House of Blues, and what a night it was! We left the HOB in high spirits, so excited to have experienced Rachel's special night! We took the long drive back to GKTW and tried to get in the gate...our cards wouldn’t work...but NO problem, we called in to the House of Hearts (there is a call box) and they buzzed us in. I had promised to stop by and tell them how the performance went anyway and they were excited for Rachel. They also had some disappointing news. I had called two weeks before the trip to book the sightseeing flight over Orlando...it was the MAIN thing David wanted to do. Pete called the Wednesday before we left to confirm that all the arrangements had been made (You have to reserve the flights in advance). On check in they told us everything was set...but when we came in from HOB, they told me they had never gotten confirmation back from Mauiva Tours and we would NOT be flying at 10AM the next morning as planned...We were SO disappointed!

We went back to our Villa and with one minute to spare ordered Pizza...that is the night I discovered the Veggie pizza, which WAS my favorite of the three types. Lisa wanted to take a bath in her jacuzzi, so while we waited she enjoyed the relaxation of the tub. She got out quickly enough when she heard there was food...I was starving, with the exception of the few bites of Voodoo Shrimp at HOB, I hadn’t eaten since we had a pretzel for lunch and it was 11 PM. LIsa had a few bites of her pizza and it was off to dreamland for her..Rachel and I enjoyed TWO slices and it was delicious..the guys had many more. Rachel and Pete went to bed, David and Christian watched TV and I cleaned up and washed clothes. It was a nice end to a busy day and we had no plans until noon the next day now, when my friends from Ocala were coming to visit for lunch and my friends from Seattle wanted to come over after they visited Downtown Disney. Our first full day of Lisa's Make a Wish trip had concluded and WOW, what amazing memories we had already made!

The next morning as I was getting ready for the day, my phone rang. It was my contact from HOB, asking me if Rachel was excited over her performance the night before, because she had received numerous rave reports of an amazing show and a thirteen year old that played better than many acts they had showcased over the years. We talked for a bit and I told her how fun it was, the guitar mix-up, how excited we were over the tickets (that was a cool touch, honestly), how fabulous the band had been ...then I told her about the sound problems and the guys walking in front of the performers and talking into Rachel’s mike DURING the show...she was mortified. Through the week she and I had at least a half dozen phone calls and twice as many emails back and forth...she kept trying to make it up to Rachel and I told her there was nothing to worry about, Rachel played the HOB and rocked it...She wanted to get us in to Disney free one day; however, we already had all of our days planned and there was no time...I told her next time we were in Orlando and she said let her know when because they wanted Rachel to come back and perform again! She also wants a copy of the performance, which I am ashamed to sayI still haven’t gotten to her...however, you KNOW what has been going on here if you are reading so what can I say...I do my best. She invited us all back to the HOB for the Friday night show in the Concert Venue...more on that later, it was quite extraordinary as well....at least in OUR world.

Pete and I were ready for the day and were going to wake the children up for a nice leisurely breakfast and morning at GKTW when the phone rang...it was the front desk telling us we had to be at the Mauiva Airport by 10 AM...it was now 9 AM and a 20 minute drive. The children all needed to shower, dress, take medicine and eat breakfast...I think you all remember I don’t do well without organization...but, we triple timed it and ran over to the Ice Cream Parlor to pick up some to go breakfast to eat in the car as we drove. I will be honest, I didn’t enjoy my breakfast...the biscuits were floury, the eggs rubbery and I was disappointed to not eat at the House of Hearts...BUT, we were INCREDIBLY excited to take the flight!

We arrived at the airport and finally found Mauiva. We had THE nicest pilot, by the name of Blake, what a cutie. He welcomed us and told us he normally had help; however, she was out because she was sick, so he was doing everything. We were to fly three at a time, so he took us all out and it was decided Christian, David and Rachel would take the first flight. Blake showed us different thinsg about the plane, then he took photos for and with us. Someone was allowed to fly the plane during the flight and of course on this flight it would be David.Christian and Rachel folded themselves in to the back seat of this VERY tiny plane, and David was in the front. We watched them Taxi away and then fly off.

Pete, Lisa and I went back in to the empty hangar, it seemed HUGE. We went back inside to the lounge to wait on them and take a few pics. The picture of Lisa where it looks like the plane is hovering above her head is actually her taking the picture of the plane and it was so reflective you can see her as well in the photo. Lisa made good use of her time, twirling around and checking out the toys for sale.

Rachel, David and Christian returned and they were all smiles and happiness. David was allowed to fly the plane for a good distance and they all three had a blast on their air excursion (it took about 45 minutes). Next it was out turn, so we all 6 followed Blake back out to the plane. What Lisa didn’t know was, I had told the Beast Lisa was going to be flying and he had come by and left her a rose! Finally we were all strapped in...I must say, if I can ride this plane ANYBODY can. I am a big lady and I was very worried about the seatbelt fitting (no seatbelt, no ride). I tried and couldn’t hook it...Blake said NON-SENSE, he climbed in the back with me and had me buckled in before I could blink...I was so grateful! Then it was our turn to wave good-bye and Taxi down the runway.



















































I am going to only put few of the pics in here of the pics fomr the plane, we saw EVERYTHING...all of the DisneyParks, Universal Studios, Sea World, The water parks and GKTW...It was AWESOME













The next few pictures are of Lisa flying the plane. The first two show what she saw and the next two show her at the helm and her instrument panel. The last ones are just more of her flying as we headed to Universal.














We began our descent and taxies back in to the runway. Blake took a few pictures outside with Lisa and then went inside and presented my two pilots with certificates.
















































I HIGHLY recommend this tour if you love to fly. Blake said we were the most air-worthy family he had ever met. When I asked him what he meant, he said typically at least 1 person on a two flight family gets quite air sick and he was pleasantly surprised that none of us did, in spite of a few little tricks he did to make the flight interesting. I found it fun, exhilarating and freeing and the BEST way to see all of Orlando! If you are looking for something fun and different to try in Orlando...this is definitely a winner. As you can see by the smiles on our face, we had a BLAST!

---

Wednesday, April 11, 2012 7:15 AM EST

I am happy to say that the Cardiology appointment went well, albeit long. We are now “unable to depend on the ECHO values as they present; however, we have the numbers from the cath at the same time and we will watch the trend to see if anything changes.” I “made up” with Dr. G...I have been upset with him since December and doubly so after the hypertension fiasco ie: he didn’t believe Lisa’s readings were accurate before the nephrologist got involved...for over a year??? really??? I love him, but sometimes....He actually thinks her pulmonary stenosis reading was “slightly better” BECAUSE of her BP meds....As he put it, her ECHO looks as good as Lisa’s ECHO will ever look without more surgery. If it weren’t for her mitral valve, he states they would have repaired the pulmonary stenosis long ago...so while Lisa has to put up with some problems as a result of the pulmonary stenosis, it beats two separate surgeries. There is a good news/bad news about her height. Because she is so tall, once they decide to do the surgery she will possibly be able to have an adult valve sized valve implanted, which has been our goal all along. He feels the hematologist is managing the coumadin well enough that it will NOT be valve failure that causes the replacement, just inevitable growth (has EVERYTHING to do with height, not weight). BUT, as she grows, it stretches the pulmonary artery causing MORE narrowing...so we need that delicate balance, which can ONLY be achieved by God, so your prayers are always needed.

He is not happy that Lisa has to have more surgery and he agrees Levenox should never be used on a child, SO, that is done with, as far as I am concerned. We were upset with it from the start! Karen, I meant to tell you THANK YOU for the update about Jen's feeding tube in the GB, I appreciated your first-hand input, THANK YOU! Caron, I am so sorry for all you have and continue to endure as a heart Mom. HUGE (((((HUGS))))) for you!

SO much more to tell, but you get the gist...


Wednesday, April 11, 2012 7:15 AM EST


I have a prayer request please, we are leaving in a few minutes for Lisa’ cardiology appointment. It is a big one and I feel like it is a waste...they will be doing an ECHO that we already know looks bad. How in the world are we ever going to know without a cath how bad her heart has become...she had to sit out for a few minutes three separate times at ballet yesterday, that is SUPPOSED to be a sign...or is she just exhausted from losing fluid through her belly. Her skin is so sore and excoriated. At the hematologist yesterday she was 5.7 on her INR (range is 2.5 to 3.5). The hematologist wants to wait until after Christian graduates so we have no danger of missing his special time...but then we will be in ballet and voice recital practice time and their are a TON of performances coming up for Rachel....this is one problem we SHOULDN’T have to be dealing with...BUT, I am DETERMINED to continue to let these children be children. Thank you again for your prayers and support!


Sunday, April 8, 2012 4:45 AM EST


Happy Easter!!! Praying you are having a truly wonderful day full of family who care about you and bring joy to your hearts. Easter is about far more than candy and eggs, it is a day of renewal and reflection...I hope you have had the pleasure of spending it with those who unconditionally care about you.

We went to my parents for lunch and the children hunted eggs, pitched horseshoes and played apples to apples.

Today is also Pete’s and my Anniversary. The children remembered to wish us a happy day before they dug into their candy. Thank you Meemaw and Lisa Z for our Anniversary cards and Lynn for my email. You all three were very kind to think of us...AND to remember.

I wanted to share a few pictures with you.

First is a picture of Pete and I from a LONG time ago.
HAPPY ANNIVERSARY SWEETHEART!

Next are a few of Lisa at the hospital.

The next batch is Rachel’s awards ceremony and her second place winning poster. I took a close up of the words, since it is hard to read on a camera.

The next group are some DVD cabinet/bookshelves David made for me for a specific location in our house.

The next are of the children coloring eggs.

The next pics are prayer shawls that my friend Becky’s church made for us at her request. Pete and I received one to share, David, Rachel and Lisa each received one and Christian received a prayer square. We were so surprised and touched. You can feel the love inside of them, just as I do with Lisa’s Prayer Quilt that we take to the hospital for each admission.

The last are a few of Bandit in the baby doll carriage, his FAVORITE place to ride.

Friday, April 6, 2012 6:15 AM EST


We survived Thursday in spite of the GI doctor being almost an hour late returning from the hospital to see us (he was our last appointment before we went to get Christian and on the way home we ran into problems due to continued road construction...it took us an extra hour to get back to Charlotte, ...our three hour trip took almost five, due to all of the construction (FIVE PLACES) up and back. We left the house at 8 yesterday AM and got home very late...it could have been worse!

Today was supposed to be just Bandit to the Vet, grocery store and try to get a few things done around the house that I have NOT had time to do yet...but my Van's check engine light lit up on the way to get Christian, so we have to take it in this morning. I am praying for an easy and CHEAP fix, I need my van and Pete won’t get a paycheck for at least three more weeks...and I have bills to pay already. What I want is a QUIET and easy weekend full of fun and family. Pete's van needs a little work today as well.

As for Lisa, The GI doctor stuck three long sterile q-tips with silver nitrate in her stoma and chemically cauterized (burned) the area again in his office. I kept asking her if it hurt and she said no...he was really swirling them around and it hurt me to watch as I held her hand and was ready to stop him at any point that Lisa said... How brave is my baby? When he was done, she confessed to me it hurt “a little, but Mama, it is better than having to go back to the hospital”. Last night it was black and “gunky” again. He has NO idea if this is going to work, he said he has only had one other child over the years whose G-tube wouldn’t close and they had a simple open surgery to close it...sadly with Lisa, it will NOT be simple and he finally “gets” that. If she is still leaking by April 19 I am to call so the GI can refer us to the surgeon. Which will probably be the week of April 23 and they may or may not be able to schedule her surgery that week...lets say they do, it will take until at least the 27th to wean the coumadin and do the heparin bridge...Christian's graduation is May 5 (awards on the 4th)....we KNOW we need at least a week to get her out of the hospital...she started to cry thinking she would not be able to go to graduation...Unless we have an emergency, that will NOT happen! So PLEASE agree with me in prayer that this hole will close and NO ONE else puts there hands on her and pinches the site! I still feel the child at ballet caused this latest problem. Ballet is SUPPOSED to be a non-contact sport!

Thank you for being here when you can and for letting me know, I realize how hard that can be.


Thursday, April 5, 2012 2:15 AM EST

We all had a marvelous time on our respective activities the past few days. The first place contest winner didn’t show up in Raleigh, so all eyes were on Rachel. She was nervous, but carried herself well. Our Statewide news station showed up to cover the event. They were 15 minutes late, so missed the awards presentation; however, they interviewed Rachel. She was poised and articulate, in spite of the fact there were several different discussions happening around the room and it was loud. They said that noise would be blocked out when they air they segment. The reporter was the interviewer as well as cameraman and he was quite disorganized....I am interested to see how it turned out...I have pictures of all of the posters to share, I just need time to get them downloaded. I can tell the time alone with me did Rachel a world of good!

David was happy to have us back; however, he and Pete had a marvelous time together. I was so glad to have Lisa back home, my parents graciously brought her home to save me the drive. I was thankful, I was/am incredibly tired. I am more mentally exhausted vs. physically exhausted. Lisa was so teary last night, she is so concerned she is going to have to go back in the hospital and it is just too soon. She wants them to just stitch her closed, if only it were that simple. She said she didn’t mind if she just leaked the rest of her life. Me? I am so angry they didn’t get it right the first time. What a waste and strain on us all, but mostly on my children, ESPECIALLY Lisa.

Today (Thursday) is going to be all out busy as you know, but by the time it is all said and done, tonight Christian will be home with us all for four days and I am THRILLED!

---

Thursday, April 5, 2012 2:15 AM EST

We all had a marvelous time on our respective activities the past few days. The first place contest winner didn’t show up in Raleigh, so all eyes were on Rachel. She was nervous, but carried herself well. Our Statewide news station showed up to cover the event. They were 15 minutes late, so missed the awards presentation; however, they interviewed Rachel. She was poised and articulate, in spite of the fact there were several different discussions happening around the room and it was loud. They said that noise would be blocked out when they air they segment. The reporter was the interviewer as well as cameraman and he was quite the grouch....I am interested to see how it turned out...I have pictures of all of the posters to share, I just need time to get them downloaded. I can tell the time alone with me did Rachel a world of good!

David was happy to have us back; however, he and Pete had a marvelous time together. I was so glad to have Lisa back home, my parents graciously brought her home to save me the drive. I was thankful, I was/am incredibly tired. I am more mentally exhausted vs. physically exhausted. Lisa was so teary last night, she is so concerned she is going to have to go back in the hospital and it is just too soon. She wants them to just stitch her closed, if only it were that simple. She said she didn’t mind if she just leaked the rest of her life. Me? I am so angry they didn’t get it right the first time. What a waste and strain on us all, but mostly on my children, ESPECIALLY Lisa.

Today (Thursday) is going to be all out busy as you know, but by the time it is all said and done, tonight Christian will be home with us all for four days and I am THRILLED!

---

Monday, April 2, 2012 6:14 AM EST

We finally talked to Meemaw, so here is the news I was waiting to share. BRAG ALERT, PROUD MOM HERE! Skip if you just can’t take it.

I heard about a state wide contest that was open to all middle school children even homeschoolers (yes, there are those who discriminate). I found out about it the weekend the girls auditioned for Joseph and the Amazing Technicolor Dreamcoat (we had to turn their parts down, due to logistics). Rachel had exactly two days to come up with a poster to represent the theme “Most don’t, and I won’t!” Middle School Poster Contest to prevent underage drinking...she was awarded the SECOND PLACE winner from the entire state!!! We have been invited to the awards ceremony in Raleigh April 4. In addition to her certificate of achievement, she won an ipod nano! Plus her poster will be on display on the ABC Commission website, as well as at their corporate headquarters in Raleigh. She was bummed she didn’t have more time to work on it (she wanted to take first place, they got an ipod). I wasn't bummed, I am incredibly proud of her!!!! Coming in second out of hundreds of entries is quite the accomplishment! If you kept reading, Thanks for sharing in this honor for her.

The hectic week ahead is not going to make it any easier to post a life update, so let me try and do that now. Thank you to all of our faithful friends who still come by, read, pray and for those wonderful messages when you have time. LYNN, you should know by now NO NEWS is NEVER good news at my house, unfortunately.

Recap, you all know LIsa got out of the hospital last Monday and Pete started his job. We had four appts Tuesday (and me without any help now, I got spoiled) , Wednesday brought us two (one was nephrology, and orders for labs for her renal panel, he wants to change her medicines around but needed confirmation her kidneys could handle it). Thursday we were back to 2 appts, plus labs and ballet. Labs showed her INR was 1.4...very dangerous for an artificial mitral valve and brings great concern to me. Friday was more doctors and a HUGE worry. At ballet on Thursday, one of the girls PINCHED Lisa on her stomach EXACTLY on her hole/bandage. She said she was trying to tickle her...it hurt Lisa and I realized she was leaking more. On Friday, she had pink tinged fluid coming out. The gastroenterologist isn’t concerned with the color of the fluid and he is sure the pinching has nothing to do with the fact she is leaking more, but he DOES think she is going to need a more aggressive surgery coming from the outside to repair...MORE blood, MORE scars, MORE anesthesia, MORE pain, MORE time in the hospital, MORE worry and MORE money....Let’s just say Mama ain’t happy! Plus, NOW on Thursday, in addition to the two MD appts we already had, plus driving up to pick Christian up from college, I have to fit in ANOTHER MD appt. (three docs and a three hour drive...I can do this)!!!

My week is shaping up like this so far...today, two MD appts, plus David’s IV iron infusion, David to woodworking, Lisa to Pete somewhere on the side of the road after 5:30. She is spending tonight and tomorrow with my Mom and Dad...a) because that rarely happens and she wanted to and b) Rachel and I are heading to Raleigh for her awards ceremony Wednesday. Pete will take her so he can see her and spend a little Daddy/Lisa time together and Rachel and I will go back to wait on David to finish at 8 PM, then all of us will head home. Tuesday we have two MD appts, then Rachel and I will drive to Raleigh to spend the night (I am too old to drive 6 hours after only getting a few hours sleep, so we opted to splurge and be safe. This is a once in a lifetime chance for Rachel and it will do her good to have my undivided attention. Sometimes, you just have to do what is best for your children, no matter the cost). Pete and David are going to do something together Tuesday night, just the two of them, so that they can have some one on one time together. It will be short though, because Pete’s new job has added an extra hour to his commute, which necessitates him going to bed earlier and getting up earlier...so we are seeing him a LOT less than we ever have, which has already been a strain. Rachel’s awards ceremony is Wednesday, then it is dash back to Matthews to pick up Lisa and we have our Wednesday night stuff. Thursday is a nightmare, three MD appts, plus drive up to pick up Christian. Friday is MUCH better, the MD offices are closed for Good Friday so no doctors...but Bandit has to go to the vet for his appt and labs.

Carol, THANK YOU for Lisa’s Muppet movie, she LOVED it! Thank you Dolly and Lisa for her cards and also Lisa, for the April Fools card!

So dear friends, that is all for now, If you have time I love to read your messages. THANK YOU for understanding my email box has 432 emails...and NONE of it is spam... CALL ME if you need me, please realize though when you call, I am usually not home and even if I am I screen ALL of my calls.

Easter is coming, it is a time of renewal....I am SO ready for God to wash me anew!!!!

---

Friday, March 30, 2012 12:27 PM EST

Drive by Post, to thank you all for your supportive messages, they mean so much and I don’t mean to keep you all hanging. Things actually have NOT been going well around here, hence my lack of updates. Lisa is still leaking from her tummy and there is so much more I don’t have time to say at the moment. It could be worse, so know I am NOT complaining, just explaining.

Please pray for Tyler's family, a young teen who went home to Jesus after a valiant fight with cancer. NO PARENT should know the pain of burying their child.

Now I am on my way to Huntersville after the girls finish lunch to pick up David, they had an Engineering Field Trip today. I hope you all are having beautiful, spring weather and happy days!



Monday, March 26, 2012 7:17 PM EST


Lisa's INR was 2.01 today, we are finallyhome. Thank you to everyone who has prayed, supported us and cared about us. Hospital stays are difficult for anyone, especially a little girl who has been poked, prodded, tested, hurt and cut wide open multiple times...We have a very full 2 weeks coming up...but at least most of her appts will not be multiple needle sticks daily into her already sore veins due to medication that causes bruises.

I want to Thank each of you who have offered suggestions about the coumadin. You are correct different formularies react differently; however, as long as you stay with the same batch of drugs during the loading phase it doesn't change a lot in getting to a therapeutic level. There ARE foods that can affect that, those with high Vitamin K content such as spinach or broccoli. Lisa is not allowed to eat them during her phase prior to becoming therapeutic, because it CAN affect the levels. She isn't even allowed to take her multivitamin, due to the Vitamin K. Once we get her therapeutic we can add those food back to her diet, and she eats basically the same amount of those foods weekly which is accommodated in keeping the coumadin therapeutic. Clear as mud, right? I wanted to try and explain though since SO many of you were trying to help us get these levels up, and I DO appreciate it! Unfortunately, it really is just a matter of time to load her system....but having had to deal with the coumadin and procedures/surgery multiple times since she was 16 months old, I do have a better grasp on it than the doctors. We can't do it too quickly, because at the onset of the treatment it actually causes the blood to clot MORE...so it must be done gradually. For Lisa, until and unless they come up with an alternative mitral valve that doesn't require blood thinners or a different drug, no matter how minor the procedure, if there is a chance of bleeding, this is what has to happen for her. We ARE Thankful we have this option, that allows us to still have our precious child with us. The hard part is, there aren't many children who take coumadin, so there isn't a lot known on how it affects little ones. Our blessing is in knowing GOD knows and is in control.

Once again, Thank you all who have prayed, those who have had time to leave supportive messages, those who genuinely care for our family. Thank you for being here for US and for your prayers.

Ginger, Thank you for Lisa's Beauty and the Beast shirt...I had NO idea you could do those type of transfers!!!! THANK YOU, Lisa is THRILLED!

---

Sunday, March 25, 2012 8:44 AM EST

Lisa's INR is 1.33 this morning, we will not be going anywhere today.Thankfully we are moving in the right direction. Lisa's hole looks quite painful, although she denies it. There is only slight drainage that continues to ooze from it, I do hope it stops soon. She has the most resilient spirit and understands that attitude IS everything. She is beyond ready to come home; however, realizes she has no choice. Me? I just want her off of the heparin, it is a dangerous drug.

Thank you everyone for the continued prayers and messages, they are so appreciated!

We have exciting news about Rachel, but want to share with Meemaw first.


Saturday, March 24, 2012 10:54 PM EST


Lisa's INR was 1.15 this AM. We need for her INR to be 2.0 before they will spring us (therapeutic for her is 2.5 to 3.5). They finally agreed with me we needed to have a new strategy, now we are doing things my way....They always come around, I have more experience than they do...


Friday, March 23, 2012 4:54 PM EST

The morning started out roughly for Pete and Lisa. They couldn't get her blood and Lisa was vomiting. Lisa is not vomiting anymore and it seems it was either her normal funny tummy (reflux) or the very low coumadin level. They redrew it and the level is 1.16...which is better than 1.0 (remember we need it to be 2.0). She was so happy to see me when I arrived, I was delayed slightly at the pharmacy (arrived just before lunch), but now I am here for the duration of her hospital stay.

Bandit's labs were good, which was a HUGE relief. We are going to finish the antibiotic and continue on with two of the meds and return in two weeks.

We are just hanging out and so glad that Lisa is feeling better. She did have some burst vessels on her face, probably from the straining and the heparin.



Thursday, March 22, 2012 11:54 PM EST

Thank you all once again for the wonderful messages. I just returned home from the hospital. Pete is spending the night, because Bandit has to go to the vet tomorrow and in view of our visit last week, I really need to be the one to hear what is happening and what the plan is (for those who don't know, he had some concerning lab values at last weeks appt. and was started on several different meds). I am so torn, I want to be at the hospital with Lisa but I actually know she is in good hands, so I need to be here for the early AM appt. for Bandit. I gave Lisa her meds, then I stayed until Lisa fell asleep (I sang her to sleep before I left, works like a charm when she can't go to sleep). Then I left. If they are quiet, she will sleep late in the AM and I will be back probably shortly after she has her breakfast. My parents are bringing David, Rachel and Bandit home early in the AM and then we will take Bandit to be examined. Rachel will have to return to the hospital with me to sit all day, she continues to have health needs (that I don't discuss here) and she requires constant vigilance to ensure she receives what she needs for her health. After tonight I will be at the hospital until Lisa comes home, Pete will stay at home with David and Rachel and travel back and forth to us. Lisa's INR is checked once a day (it is slow moving), her heparin levels much more often (it is quick and by IV). We know this too shall pass and we will be home again soon. We are blessed to have our children with us, so many of our friends have lost theirs much too soon. Sorry if I am a little emotional, I miss my babies, I am tired and I am GRATEFUL! There IS much to be thankful for.

---

Thursday, March 22, 2012 1:17 PM EST

So they just came in, seems the coumadin level I was told earlier this morning was told to me in error, the correct value was 1.09. That us a long way from 2, or so it feels to me. They were just in to draw more labs which happen multiple times per day. The doctor HAS decided that we don't have to wait for two days worth of therapeutic levels before they will let us go home, but to be honest, it doesn't look like tomorrow with this level.We are going to paint, then head outside, since the playroom is NOT set up for anyone over preschool age. Thank you all for the prayers.

Thursday, March 22, 2012 6:17 AM EST


Lisa's INR is 1.4 this AM (she is still asleep). We have to be at 2.0 for two days in a row before they will let us go home. Her heparin level increased, so now they are playing around with the dosage...


Wednesday, March 21, 2012 7:54 PM EST


Lisa has had a good day, just no appetite. She has eaten 1 strawberry for breakfast, 7 french fires at lunch, a bite of a marshmallow lollipop and a sprig of broccoli. Of course YESTERDAY she was crying because she couldn’t eat, poor sweetie. She has had minimal drainage, but we aren’t getting excited, there IS still a hole in her abdomen. My parents brought David and Rachel to see her and they had gone shopping for a few little gifts to cheer her and they each picked her out a card to decorate her room. The best thing they brought were themselves, it cheered her...and me! She had been slightly teary, she really wants to go home and there is no end in sight... My parents have been a huge help and said they would continue, Praise the Lord! That takes a weight off of me!

As Rachel and my Mom were walking in (my Dad dropped them off out front) our neurologist saw them and came down to visit with us for part of her lunch hour. In the midst of all this a big box arrived from a friend of mine to cheer her up. We saved it for when everyone left (which was a GREAT idea, because Lisa was so sad to see her siblings leave). The boredom had set in early this go round and these gifts made her smile and gave her something to entertain her. We are just hanging out, waiting on Lisa’s coumadin level to rise....and it will not even be checked until tomorrow at 6 AM, because it takes a few days for it to even start to move. Thankfully her heparin level in within normal limits!

THANK YOU to each and everyone who continues to check in and those who have time to leave a message. I KNOW how busy life is for us all and I THANK YOU from the bottom of my heart. Continued prayers for ALL who need them, I do have a lot of folks who read here who need those prayers, so THANK YOU ALL for supporting each other.

Wednesday, March 21, 2012 7:44 AM EST


I am waiting on Lisa to wake up, and thought I would post a small update, not much to tell this AM. She was so sad last night, she wanted to go home. Lisa finally fell asleep around 10:05, once they stopped doing everything to her. At 10:30 they woke her up to take a pill...and it took until nearly 2 AM for her to fall back asleep, until 2:30 when they came in to take blood...good times...thankfully they got it on the first try and barely a word from Lisa. She finally fell BACK to sleep and slept through vital signs, then rounds, Praise the Lord. They just came in to assess her and she is stirring, so not sure how much time I have...


Tuesday, March 20, 2012 7:44 PM EST

It has been a LOOOONG day....the problem? Not being able to eat. Lisa had not had anything to eat or drink since last night at 8:30 and she was SO hungry, poor sweetie. They came to pick her up at 12:40 for her 1 PM procedure (we had a few tears twice over NOT being able to eat). We sat in the holding area, and sat...and sat. LIsa was teary AGAIN by this point, it was shortly after 2 PM. Her tummy was cramping she was so hungry. They FINALY took her back and I am happy to report she tolerated the procedure well. The Dr. was pleased, he biopsied several areas in esophagus, several in the stomach and several in the duodenum. I asked him innocently enough, so this stopped all of the leaking, correct. To which he replied.....WELL....at which point Pete and I both said, what do you mean. He said it SHOULD have stopped all of the leaking, but there was a possibility that he would have to perform an open surgical procedure. Let me just say, that was news to us. The time to tell me something like that is BEFORE you do this. Prayer warriors, PLEASE agree with us in prayer that this WAS the solution and we will be able to get her coumadin level therapeutic quickly so we ca go home!!! LIsa has had a meal and feels SO much better (she was on clear liquids when she first got back). Thank you for being here for us.

Tuesday, March 20, 2012 4:44 AM EST


Thanks to all who are praying for Lisa. We got checked in to the hospital early yesterday AM. Lisa has had numerous needle sticks, the ones that irk me are the times they miss, which have been numerous. I have had to be Mama Bear at times and just say, get somebody else. LIsa is still leaking and finally last night at 9 PM they brought me the correct supplies to keep her skin clean and dry...nearly 14 hours after we were admitted. Care, as always, has been hit or miss....but our night nurse has been on top of things, at least. They had told LIsa she could drink clear liquids until 9 this morning, then came back and said nothing after midnight. Better safe than sorry, but her surgery isn’t until 1 PM. Typically she doesn't feel hungry...but she will when she wakes up, simply because she can't eat, poor sweetie.

Please remember I can only send one update per day and that doesn’t always go through. I will update as I have news and am able. Plus, the Internet connection up here is a little spotty. I think it is our room location, I don't remember this problem when LIsa was inpatient n November. If you missed any past updates, including pics of David in the parade, please click on journal history to catch up. THANK YOU ALL for continuing to keep LIsa in your prayers!!!

Sunday, March 18, 2012 2:04 AM EST

We had a LONG day at the MD appts on Friday. We were at all the MD's until 6:45 last night, it was a long day, got home at 7:15 and had to feed everyone (we didn't expect such a long visit). I had to keep the phone lines open as I waited for the hematologist to call us back with very important labs, we knew her INR was still 5 by finger prick (that is what it was on Wednesday and should have gone down). Doc finally called at 9:45, Lisa was therapeutic on the Lovenox, BUT, she was still over 4 on her INR levels from the blood draw. She was going to have us start vitamin k to reverse the INR, and go to the hospital Sunday to have labs drawn, but that becomes a slippery slope, especially following surgery. She changed her mind on that plan, so the GOOD news was that we could STOP the Lovenox this weekend because Lisa's blood is much to thin. She has bruises on her elbows from just resting her arms on the table, we touch her and she is bruising. Her poor legs are a mess, with hard knots. She was swollen at the MD office yesterday afternoon and as the doc said "just didn't look right". I am watching her, the doc was concerned that she might have something wrong with her kidneys , because she isn't clearing the coumadin from her system the way she should be. The plan is to let us stay home until Monday AM and start her heparin drip as soon as we check in and give IV vitamin K if necessary...UNLESS, per the doctor, my "mommy radar picks up something isn't quite right", so of course I am watching her doubly to ensure she is okay!

Saturday evening I felt something wasn't right, due to all of the drainage...but I can't pinpoint anything so I am checking on her all night to ensure Lisa is okay. So much more to say, but why...you all get it...but my relief at NOT having to give her the Lovenox is immense! Poor sweetie has tender bruises all over her abdomen...

David was in the St Patrick's Day parade Saturday. It is their' loosy goosy" parade, they don't have to be quite so strict/rigid...my friend was at the parade and snapped pictures of David when she realized it was him. I wanted to share....

---

Friday, March 16, 2012 6:20 AM EST

I have THE MOST AMAZING daughter! I was dreading giving her that shot at 1 in the morning with every fiber of my being. Pete set his clock and came downstairs at 12:50 to see if I needed help. I was sitting there, syringe in hand, ready to go and praying. We went back upstairs and he held the flashlight while I cleaned the area with alcohol. I was TRYING to give her the shot without waking her up. I know, horrible of me, right? She was exhausted when she went to bed. So here I was, I was cleaning the area and she started flicking at it as if she was itching, and still asleep. She began to roll over to change positions and I rolled her back. Now remember, she has a bi-pap machine on every night...and is such a trooper about all of that and has been since age FIVE. So I am trying to keep her on her back, avoid the tubing clean the area and give her a shot...without waking her up. I took the syringe and stuck her, her eyes flew open, I gently pushed the plunger in, then pulled out the syringe, the entire time talking soothingly to her and guiding her to lie back down, apologizing gently and telling her how brave she was. She reached up and hugged me and said, "That's okay Mommy" I love you". I hugged her, stroked her hair then left her to fall back asleep.

I ask you how many of your OWN children would handle that scenario with the grace and understanding of that amazing child of mine? She is no less than incredible! It isn't like insulin, that is certain. It isn't so much the needle itself, but the liquid burn inside, from what I understand.


Thursday, March 15, 2012 11:20 PM EST


No Mom should have to wake their child up at 1 in the morning to give them a shot in their already sore abdomen. I have to do that in a few hours and I am not happy. We had to take Lisa back to the hematologist this afternoon, to get her first dose of Lovenox. I was afraid of side effects and wanted to be near medical assistance if necessary. It was very painful, Lisa doesn’t have a lot of fat, but she is sore and swollen. Poor sweetie just cried when Hannah gave her the shot and it was the first time I ever saw her NOT speak to one of the nurses after they hurt her. She said this was horrible and I had to agree quietly in my head. I am NOT looking forward to this.

We have two MD appointments in the AM, then Lisa needs another shot at noon and we go to the hematologist at 3:30 for labs and more assessment. This has turned into a bigger deal once again than they portrayed to us Wednesday and it actually put me at more ease today with the heightened concern. I had been feeling such worry since yesterday when they told us the change of plans yet again. I am happy to say that more conservative heads have prevailed and the cardiologist has stepped up to say they MUST do things the CHOP way, he did acquiesce to the lovenox, although it was NOT his choice. They still might have to put Lisa in the hospital earlier than they hoped, it all depends on how she reacts. As Dr. B said to day, Lisa bounces to her own ball...that cracked us up, because it is SO true, she NEVER fits the pattern for ANYTHING!

So here is the current plan, as of 6 PM. Lisa will be admitted to the hospital Monday at 8 AM for surgery on Tuesday, March 20. As most know, She had her feeding tube removed on February 24, and, unfortunately, she is still leaking gastric (stomach) contents from the stomach to the outside of her body through the hole. They plan to go in and put clips in her stomach to try and stop the drainage. They will also do a biopsy.* Lisa is on coumadin, which complicates matters. She is having to wean from the coumadin to lovenox, which is injected into her already sore abdomen, twice a day. We are having daily visits to the MD and labs drawn daily to get Lisa to a therapeutic dosage. Monday they will begin a heparin drip to have and utilize during the surgery. Recovery depends on exactly what they have to do once they look inside and how much bleeding she will have. The projected stay is Monday through Friday; however, that is all up in the air at the moment. Lisa MUST have two consecutive labs showing therapeutic levels for her coumadin before we can go home after her surgery. In November, it took five days following her cardiac cath to return to therapeutic range. This is change number 7 to the hospital plan since March 9. I feel more assured today though, which is a blessing. Pete has had to postpone the start of his job; however, his new boss was very kind about it when Pete called him this evening. Please keep Lisa and our family in prayer as we embark yet again on a tumultuous journey. March 18 will be the ninth anniversary of Lisa's first Open Heart Surgery. It has been quite a never-ending journey. Oh there is SO much more to tell, but this will suffice. I am dreading 1 AM...



Thursday, March 15, 2012 1:20 AM EST

David was supposed to work at the Aviation Museum from 10-4 today; however, due to multiple changes to what they plan to do to Lisa on Tuesday, David is only working 10 to 2. Lisa and Rachel each have MD appts this AM, different places. We had to add a dental appt for Lisa to today's schedule, they want to ensure things are okay for her to be put to sleep. She is also supposed to have ballet at 4:30 if she is up to it, she is exhausted. If my nutrition was pouring out my gut, I imagine I would be exhausted as well. The plan for Lisa has changed MULTIPLE times Wednesday and we are waiting to hear back from the GI doc on the final thoughts/procedure. As it is,her procedure has been changed from 7 AM to 1:00 PM. Poor sweetie will be starving. They NEED to do it in the main OR (duh, she has a cardiac condition). They have decided that IF they can change the procedure , they will use levonox to bridge her, with just a brief use of the heparin drip which will require a MUCH shorter hospital stay. They have ALWAYS told us in the past this is NEVER an option for her, so this has me on pins and needles. It is a medicine that I will inject twice a day into her abdomen and can cause horrible bruising (just what we need, more abdominal things). They also told me it burns like the dickens as it is injected...wonderful and I get to be the evil one to do it to her. Honestly the plan changed so many times Wednesday I was going nutso. I called the pharmacy to ensure they had the meds, they only had two doses; however, would have enough to get us started. While I am in the middle of an important MD appt for David, Pete calls to tell me the insurance will not pay for it (get this they would ONLY help pay for BRAND name product, not generic...that told me a LOT about this medicine)...I talked Pete through what/how to work through this and there was not ANY of the meds we needed within driving distance, per the pharmacy. In the meantime, I got a call from our sweet nurse at the hematology clinic (My phone, with limited minutes was in overdrive today)...Lisa had to be stuck TWICE at clinic, much to her sadness and our little nurse inadvertently put DAVID’s Labels on LISA’s blood...she felt horrible...so did I....I also didn’t want her to get in trouble, we love her, but SO not what we needed! With the addition of this new injectable med, comes the need to have labs drawn at EXACTLY four hours after administration to check levels on Friday...the problem..we have NO IDEA when we will have the meds....and we have TWO MD appts...after that though THEN we should know the plan for Lisa....we better!!!

As for Pete’s job, we are VERY grateful, it isn’t perfect, but doable. It is a slight pay cut (again) and it adds an extra 44 miles to his daily commute, which means more gas and more time...The insurance APPEARS comparable; although, the prescription plan is MUCH higher...The best part, they are SAYING all the right things about working with us about Lisa. We didn’t tell them everything, they acted as if it weren’t necessary...but we felt the need to be honest that we DO have children with health needs and those needs MUST come first. Too many times Pete has had to put his job before the family, for fear of losing his job...After being laid off a SECOND time and doing everything right, I think he realizes family must come before job, within reason. He will be so far away it will be very difficult for him to help me if that should become necessary though.

Thank you all for your continued prayers, your support, your messages and kindness. God IS AMAZING and he has seen us through incredibly rough days. My Faith is ALWAYS in Him and He never lets me down. Now I must try and get a little sleep.

Tuesday, March 13, 2012 11:20 PM EST


SO much happening, THANK YOU for all of the messages and for the prayers. I am humbled, Thank you. Please keep signing in when you can I AM reading and the messages lift my spirits.

We had some disturbing lab values for Bandit at the Veterinarian, he will return next Friday, they have added another medicine.

This is simply an incredibly busy week. There is a LOT going on and LOTS of information. Plus we have had additional activities thrown in. David, Rachel and Lisa all worked this AM at the Governor’s Tourism Convention held in Concord. They volunteered as “actors” at the luncheon that was held, representing different icons from our area. David was Charlie, the USS NC Battleship Mascot, Rachel was an artist and Lisa was a Southern Belle. They were paid and also fed lunch (They didn’t include parents, to bad, the food looked good). Here are a few pics, I don’t have any with David’s hand and croc feet on, they had kicked us out by the time he put them on.

Lisa’s GI doctor wanted to do the PEG closing Friday; however, they still haven’t gotten insurance approval, so it is scheduled for Tuesday, March 20 at 7 AM...no worries, we will already be in-patient to wean over to heparin. I hope to find out at tomorrow's hematology appt. when they plan to admit her...she was leaking a lot tonight. She got so tired on the way to ballet that she was unable to dance, so she didn’t. We still had guitar and jazz ensemble for Rachel (Pete took her) and Aviation Explorers for David. David and I got home after 9....

Tomorrow we have four MD appts, Lisa has voice and David has engineering, Thursday we have 2 MD appts, David is working at the Aviation Museum and Lisa is supposed to have ballet...theater has ended for the moment, PTL!

We have 3 MD appts Friday and then Saturday David will be in the St. Patrick’s Day Parade with the Firefighters and Rachel and Lisa have 4H...so these are MY plans, lets see what the hematologist comes up with tomorrow to change all of that.

To add to the fun. Pete received all of the information he needed from the company he has been interviewing with. He accepted. They want him to start Monday....You just have to love our lives and the timing of things....Stay Tuned....




Tuesday, March 13, 2012 1:20 AM EST

When I last left you, it was getting close to eight and one of the road crew came out to tell us they were ready for Rachel and Pete to start the show. We asked about the sound check and were told it was taken care of....

We were seated at a nice big table they had set up for us up front and Rachel and Pete made there way to the stage with their borrowed guitars. You will see a few photos below...along with the road crew for the band that was playing after Rachel as they did their supposed sound checks. Then they looked at Pete and told him they should start playing ...no introduction or anything, which we found weird. We learned a LOT from this experience and NEXT time (and Rachel HAS been invited back to play whenever we can afford to get back to Florida...more on that later and NO, I don’t have a trip planned sadly) PETE will take the bull by the horns and introduce them himself. They started off playing and while I was thrilled for Rachel, I knew there were problems because you could barely hear Pete on that acoustic guitar and while Rachel sounded great, a fuller sound would have been MUCH better! I could see the frustration on Pete’s face and feel it on mine. Rachel couldn’t even hear him playing so they could blend or to know where they were and when to change her chord progressions (You musicians out there will know exactly what I am talking about...good musicians feed off of each other and blend together, it is SO MUCH MORE than learning notes on a page). I don’t want you to think it wasn’t a good performance...it was FABULOUS; however, I have heard/seen them both give a much better show and for all of us that was a bit of a letdown and the reasons were all technical and beyond their control....but I am getting ahead of myself. One of my friends who flew in from Seattle, Christian and I were all taping the show. I was too excited to eat, so I told our sweet waiter I would order after the show and he was okay with that. So many people kept stopping by me to ask how old Rachel was or tell me how good she was...it seemed some of the HOB staff were mixed up and thought she was the wish child. I had to explain several times Lisa was on her MAW trip BUT Rachel’s playing at HOB had nothing to do with that. This is where having our contact person at HOB would have come in handy...but more on that in my other updates, she and I have had LOTS of conversations about that night and the difficulties that were encountered on multiple occasions since then.

This was the lineup of songs they played that night and the artist version they were using:

Moondance (Van Morrison)
Blue Sky (Allman Brothers Band)
Crazy Love (Van Morrison)
Hey Joe (Jimi Hendrix)

The band’s drummer joined them for the last two songs:
White Room (Cream)
Stormy Monday (T Bone Walker)

It was great to see them all playing together, even if we couldn't hear Pete. In the MIDDLE of White Room, one of the tech guys walked directly across the stage IN FRONT OF Pete and Rachel and started speaking into Rachel’s microphone “can you hear me”...I was NOT a happy Mom and Rachel looked over at me as if to say “What do I do...I told her to just keep playing (which she was doing, she never missed a note)! Lisa B and I just shook our heads in disbelief. They finished playing after about thirty minutes and there was rousing applause, which made Rachel smile. I could tell though she felt like I did and while she was happy/excited/pleased...it wasn’t all she had hoped it would be for her first out of state gig. She and I went straight to the bathroom to wash the filth off of her black, black fingers and let her tell me how she felt. I assured her she put o a phenomenal show, even if it WASN'T the way she had planned. We passed by the band, who was finishing their dinner and going on next. They stopped us and kept complimenting her, asking her various questions about her style of music and utterly amazed she played so well, other patrons also came over to express their pleasure and of course all of our friends told her she did well...still, it wasn’t the show she had been dreaming of for three months...BUT, it WAS a learning experience and she DID play well. As I told her, you don’t want to start at the top..then there is only one way left to go! Bottom line, it was an opportunity that most people never have and she has the talent to back up anything she chooses to do...and in spite of borrowed guitars, a crew that seemed bewildered and a bad sound set up and the talent director not being in attendance...the show WAS amazing, because Rachel’s talent is far beyond her age. Any let down feeling we felt was simply because WE know the caliber of her ability...and after I spoke to the talent director early the next morning, it became apparent there were those at HOB who were very impressed.

It was easier to put all of the pictures up at once, so I hope you can figure out what is going on, it is fairly simple. There aren't a lot of pics of the actual performance since I was videotaping, although at one point I was doing both...and NO, I haven't made up my mind what I am doing about the videos I took, once I get them uploaded to photobucket, thirty minutes is a LONG upload that my computer apparently doesn't like...

In addition to Myself and the children, we had 11 other friends in attendance. After everyone visited for a short bit, we sat down to eat (Pete and I shared a plate of Voodoo Shrimp...I wish I had gotten my own!) and it was delicious! We went outside to say goodbye to our firneds...and DAVID was in such a great mood he began pushing Lisa around in her wheelchair, running some and dancing to the music, laughing and joking...for those who know David this is VERY uncharacteristic of him now and was reminiscent of the way he used to be when he was small...it was simply wonderful to see, and he had Lisa laughing and giggling...I actually had to call him to come back to us he had gone so far away...ahhhhh, the magic of Disney, there is NOTHING like it!!!!

And Make no Mistake, RACHEL ROCKED THE HOUSE OF BLUES!!!!!!! We are simply trying to share all of the story with you, because it makes what happens later in the week all the more sweet.

I want to share my friend Marv's perspective of Rachel Rocking the House of Blues with you. It actually captures exactly how we feel NOW about the performance from someone who was able to observe more of what was going on and NOT just the Mom's eye-view 15 feet from the stage! (and that of the performers perspective). If you please the audience, that is ALL that matters!

KIND WORDS FROM MY FRIEND MARV!
Some quick thoughts/impressions about the evening at HoB.

I wasn't totally aware of some of the details you gave. When the guy was walking around in front of Pete and Rachel during the show checking the sound, I just assumed it was purely troubleshooting due to the difficulty in hearing Pete. I guess since I wasn't looking at it from the same standpoint as a worried Mom I focused on something completely different. Jonathan and I were looking at each other while all of this was going on, and the thing that stuck out to us was that Rachel was watching the guy walk around in front of her, with no noticeable change in expression (at least to me) and never once missed a beat, a chord......nothing!! I was so impressed by how talented she had to be to continue to play so skillfully with what appeared to be no focus whatsoever on what her fingers were doing!!!

Sitting at the other end of the table, and not completely focused on the stage since I wasn't trying to video the show (although I did capture a short one on my cell phone) I took the opportunity to look around the room at some of the other tables while they played. There was no shortage of people watching intently, and many of the ones I looked at were obviously enjoying the performance and you could tell were amazed at Rachel's talent.

I also noticed quite a few people, who appeared to be waiting at the front to be seated, come to the railing behind Judy and watch in utter amazement that what they were hearing was coming from a guitar in the hands of such a young lady! I watched one particular man stand there with his mouth open, then smiling and shaking his head in disbelief before he disappeared back to the front door area. Very quickly he returned with two ladies he was apparently there with, pointing at Rachel and commenting to them as they smile and nodded in agreement to what he was saying.

And finally, the one thing that probably more than anything told me what a wonderful job Rachel was doing (well, outside of my personal ability to evaluate such musical talent) was when the drummer for the band joined them during the final two songs. I know that so much of blues has to do with the musicians "feeling" the music, which allows them to come together, start playing, and just create as they go along. As Rachel was playing I watched the drummer, eyes closed, bobbing his head back and forth to the music, really feeling it and into it! For a guy who does this professionally, that was a true testament to Rachel's ability to me!

So Judy, even though you and the other's may have been distracted at times by all the things that went awry, I can promise you that Rachel's talent and ability shined through all of that and there were many, many people (and not just your DIS family there to support her) who were very impressed in what they had the pleasure to experience that night!

After the show you could tell that Rachel was thrilled by the opportunity and the reception she got, in spite of all the glitches! We had such a wonderful time and were so glad we got to be a part!


The last two pictures are of some of our friends that were in attendance.
















































































Sunday, March 11, 2012 1:44 PM EST


The GI doc told us Friday to wait until Tuesday to see how Lisa is doing from where he took the feeding tube out. He is hoping against hope the hole in her stomach closes. If Lisa is STILL leaking, they want to put her in for an "endoscopy with clips" to close her stomach. Simple right??? Until you throw in the fact she is on coumadin, which means an extended hospital stay. They had ME to call the cardiologists and the hematologist office to consult with them...Frankly Lisa is leaking more the past three days than she had been. From my research that isn't unusual. I Know you are all praying, if you will continue I appreciate it please.

Some people have been confused about this. I would like to clear up any confusion as to what is going on. Lisa had a feeding tube inserted into her stomach at three months of age. For many, many, many months into years it was her sole nourishment and then it was a huge help to supplement her meals. As her heart got stronger, she was able to eat. We kept the tube, because Lisa was often dehydrated and it was an easy way to get fluids in to her without having to be hospitalized. She had some doctors that wanted it out and some wanted it to stay in. Finally this past Christmas, they decided as a team it could come out. After some delay it was taken out on February 24. In the almost nine years she had it we NEVER had ANY problems or issues with it. The GI doctor was quite casual about the entire process and said her hole would close on its own within two weeks, and if it didn't to call him. Friday was two weeks. This hole is IN her stomach. There is a Hole that drains from her stomach and out the stoma (hole where the G-tube was) to her skin. We can't just close the surface skin (I am the best at wound care, one of my nursing loves...gross, to some, I know). Closing the outer skin, without closing the STOMACH would cause acidic stomach juices to float into her abdomen and probably cause caustic erosion inside of Lisa at best and peritonitis at worst. That is why the other hole her THIRD bellybutton, must remain open until the stomach closes. I hope that helps with any questions you might have, if not, Feel free to ask away...I know that way you can pray more effectively! But she can't keep leaking stomach contents forever...it has irritated and gaulded her skin and frankly it is not comfortable for her.

As for the Job, they do want Pete, but we still don't have the answers we need. Trying to sit quietly in the Lord and wait on HIS answers.

---

Monday, March 5, 2012 7:09 AM EST

I wanted to share the BEAUTIFUL gift David made for Lisa. She absolutely LOVES it and was so thrilled to have it. It is (obviously) a cradle. He went with a stain to bring out the natural grain of the wood and it looks even more beautiful in person. Those are Lisa’s twin babies, Jason and Isabelle, that my parents gave Lisa (These are the babies she was referring to when she said what she wanted for her birthday, along with the year supply of meat and her Belle shirt she wanted).

As for the Paper Jamz guitar if you can see it...it was a present from the hematology clinic..they always give Lisa a birthday present every year and as you see it is a nice one. Continued prayers for Lisa’s PEG hole, it looks terrible, I am airing it out. She has a runny nose still, but denies she feels badly or that her “hole” hurts. She had a friend from ballet class over to play yesterday and Lisa was very short of breath. We just got home form the girls pulmonology visit and while Lisa sounded crunchy, he didn’t think we needed a chest x-ray...yet (his words, not mine). Rachel’s asthma was well controlled and he said we could change her inhaler, thankfully he had a sample for me.

I am including a few pics of Bandit, so many have asked about him. He is such a big part of our family. Bandit will celebrate his fourth birthday next month and we are incredibly grateful to have him in our lives. Not only does he bring us joy, he brings joy to many and he is READY to get back to work...soon I hope, for his sake. I think you will agree he looks amazing and it is difficult to believe we almost lost him in January.

Saturday, March 3, 2012 7:09 AM EST HAPPY BIRTHDAY PRINCESS!!!!




Today, March 3, is Lisa’s NINTH Birthday. Nine years ago she came into our lives and has Blessed us beyond measure. She has shown more people what it means to Love the Lord and to trust Him for EVERYTHING! I have actually had people tell me SHE was the reason their Faith increased, and I know exactly what they mean, because Faith in God is what has gotten me through the tough days. EVERY child is a gift from God, and their birthday is a time of celebration...but a child who has endured as much as Lisa has brings a special meaning to celebrating a birthday. Each year has been an incredible gift, one I Thank God for EACH and EVERY day!

Some cards have been arriving for Lisa this week, which she hasn’t yet opened, I am saving them to ensure she has a few things to open later today. Our celebration will be very low-key, money is an issue. I guess it is just as well, Lisa isn’t feeling her best, she is coming down with something, she has a cough and stuffy nose. She snuggled in my arms last night until midnight, she was having trouble breathing. She is still asleep.

A quick update for those of you who have expressed an interest (especially for you Lynn, my faithful friend who signs in nearly every day...and HAS seen the pics of Lisa’s hole...). Lisa is STILL leaking from her PEG site, although it isn’t pouring like a sieve any more, it IS still a lot and her skin integrity has broken down some from the tape and the gastric contents. It is NOT unusual, from the research I have done. All the doctor said when he removed it February 24 was "NO PROBLEMS, in almost all of the cases they close up on their own in two weeks". period. From what I have read, that IS true; however, in children who have had PEGs longer than 11 months, 23 percent WILL require surgical intervention. I am praying for ONCE she is in the majority, because we do NOT want another hospitalization!

As for Pete's job interview Monday, it went well. We had a call from the recruiter on Tuesday that "they LOVED Pete and his DNA fit with them SO WELL". She said there would be an offer forthcoming by the end of the day Tuesday...It is Saturday morning and no offer yet; however, we aren't surprised...They were heading to Las Vegas for a trade show, I had NO expectation to hear anything until Monday or later anyway...so no worries! In the meantime, Pete is STILL looking for more jobs.

Bandit is doing quite well, his Vet visit Tuesday showed he is improving and getting stronger every day. We were able to stop another one of his meds, so we are now down to only two medications! I am SO HAPPY!

I am thrilled to say Christian is home for the week, Spring break is almost always on Lisa’s Birthday!! She is beside herself with joy to have Christian home with us. He has a lot of projects to complete for school, as well as tweak his resume, as he continues to look for a job post graduation. Continued prayers for that would be appreciated.

So what does a Nine Year Old Princess want for her birthday? She hadn’t told me until a few days ago (except for the last one on the list). She wants a year’s supply of meat (that made me cry, for obvious reasons), a Belle shirt (Beauty and the Beast type...I couldn’t find one in the three days she told me, she needs an adult small size) and twin baby dolls (she told me that a month ago, and my parents got it for her. They came over yesterday and brought pizza for lunch to celebrate with us. Christian was home as well, it was good to have all my children together)! I think all of her requests were reasonable, even if not doable. She is such a sweet child.

To my Precious Princess:




I LOVE Betty Boop!

---

Friday, February 24, 2012 11:22 PM EST

Lisa said this was one of the best days of her life...considering I have been there with her for EVERY one of her days, I have to agree! We had a gastroenterology appointment scheduled for the end of March; however, Lisa was on their cancellation list. They called today while we were eating lunch, to say they had a cancellation for 2:30 could we take it? A quick phone call to rearrange another appt. and we were good to go. Why the urgency? We were told December, 2010 we could get Lisa’s PEG (feeding) tube out in March, 2011, just in time for her May Wish Trip (for those who have not been here long, that was our second time we had planned to go, that trip also had to be postponed due to medical reasons). Her pulmonologist and vascular surgeon both wanted her to keep the tube, since it wasn’t causing any trouble. While she was only using the tube primarily for hydration, their feeling was, if it wasn’t causing a problem, keep it, we had been able to keep her out of the hospital quite a few times, because she had the PEG. Fast forward to December 2011 and FINALLY ALL 23 doctors were on board with her having it out. They told us to call after the holidays and schedule the appt. to have it removed. They wanted to do it the day before her birthday, I said NO WAY, she has had it since June 2, 2003, I didn’t want it to mess up her celebration, so we scheduled the appt. for a bit later, staying on the cancellation call list.

DRUM ROLL PLEASE!!!! After almost NINE years Lisa no longer has her feeding tube, Praise God! This really is a momentous occasion.

I was going to post pics then thought some of you might not find it nearly as fascinating as I do (I AM a nurse geek). All Dr. H did was deflate the ballon and pull the PEG out, then they dressed it, because he told us it would leak. We need prayers please for it to close on its own, with no stitches. I will be honest with you, I WANTED stitches, this hole is as large as her belly button (a little bigger than a dime, smaller than a nickel) and and goes straight to her stomach. We stopped at the store on the way home so I could buy some dressing supplies. I should have bought more/different because as soon as Lisa ate/drank the liquid POURED from the hole like a sieve. I changed the dressing six times in half an hour (which Is why I didn’t have time to call you back Lisa, so sorry). I have to clean her well following this, to keep the stomach acid from excoriating her skin. I sent Pete to the store to get her prescripton and more supplies...FYI: sanitary pads are a GREAT absorbent for medical needs in a pinch, often it is nice to have been a home care nurse to know the tricks to rig things to work on a Friday night. Honestly without totally grossing you out, more is coming out of that hole than I expected.

I have to add, we don’t see Dr. H but every six months typically (Lisa has other GI problems). He wanted to hear all about the wish trip and Lisa regaled him with stories We shared with him that Rachel had played at the HOB. His brother is in a band that has played at HOB~ Myrtle Beach and Dr. H was duly impressed (he also treats Rachel). He asked Lisa if she was playing an instrument and she told him she was teaching herself piano (she is), but that she was also taking voice lessons. He asked her to sing for him and his mouth fell open as she sang her recital song. Then as we came out of the room, there were several staff members standing there wanting to know who was singing (they thought it was me)! They asked her if she would sing again, which she did, which brought MORE staff (billing, triage, etc.) out to hear her, so she had to perform a third time...not that she minded.

It really has been an amazing day. There have been many blessings for us, as well as our friends. TODAY I have been witness to some very amazing things and NOT just within my family. This has been a great, God filled day and I have felt His blessings, I hope you have as well.

---

Monday, February 20, 2012 5:46 PM EST

I have had so many people looking at out photobucket pics this month they have locked my account down until after the 24th...they want me to upgrade to PRO but I don't have the $40 every two years that it costs...

House of Blues update Part 1 in the Journal History.


I want to thank those who take the time to let me know you are enjoying the trip photos. I realize often time is short and you don’t always have a moment to leave a message. I want to once again thank those of you who do :o) It motivates me to post more.

We are busy as usual around here. Lisa sang in her very first voice recital on Friday night. She sang beautifully and we were so proud of her. I have posted some photos of her and Rachel at the end of this update. David was more interested in getting a bite to eat than my taking pictures of him. Lisa was the youngest singer, she had to go first and the accompanist began before she could introduce herself; but, Lisa didn't let that throw her. She simply introduced herself and the accompanist started over. SO many of the adults forgot their words, I felt sorry for them! I really think they just froze...Lisa has been invited to audition next Sunday for a production of "Joseph and the Amazing Technicolor Dreamcoat". IF we can fit the rehearsal schedule in to our other activities, we will let her try. I think Rachel might try out as well, theater is over for the year in mid-March and she needs something else to keep her occupied.

Pete and David are at Woodworking and the girls are working on a project, so I thought I would update.

Christian took a fall yesterday in the snow they received at school (we just got some very cold, wet rain and sleet). He hurt his wrist and hit the back
of head, and today when he FINALLY told me, he assured me he was FINE. Of course, all I could think of was the fact he had broken his wrist in the same place twice when he was younger and kept playing video games as if nothing had happened BOTH times. He also spent two days (at Valentine’s Day) in the hospital when he was in the sixth grade because he fell at school and had a concussion...he DID sound good when I spoke to him earlier...Hi honey!

As you all know, Pete is still out of work and we could use some prayers for superhuman help and our needs. His “BIG” interview is February 27...that will be three months of being out of work, paying our massive bills the best we can. It HAS been a blessing to have an extra set of hands around here and it will be hard for me to go back to mostly me taking care of business. I have gotten spoiled and I know it.

That is enough of our woes, enjoy the pictures of my beauties!

---

Thursday, February 16, 2012 2:50 PM EST

Have I posted that Pete has a second face to face interview with the company that really liked him on February 27? They are waiting on the President of the company to fly in from Israel...

That day when we arrived home, there were 2 small Harry Potter wizarding hats for our daily gifts from GKTW...I am not sure where Pete put them in the picture folder I can’t find them. After everyone had a little rest it was time to get dressed...Rachel’s first out of state gig was coming up and we didn’t want to be late. We were scheduled to arrive at 7:30 PM and we left in plenty of time, just in case we encountered traffic. Our biggest difficulty was finding a parking space. We got everyone out and made a bee line for the bathrooms near LaNouba. I was navigating my way out of the stall with Lisa and her wheelchair. I looked up and spotted a handmade Disney bag I had been coveting for months. My first thought was...that lady has my bag...then I raised my eyes quickly because I KNEW who must be wearing that bag...I was right, it was my friend Lisa B who flew all the way from Everett, Wa just to meet us and support Rachel playing at the HOB! She couldn’t wait to meet us at HOB, so when she saw us all heading to the restroom she and Megan (her daughter) came over to say hello. Lisa’s husband was killed in the Earthquake in Haiti two years ago, he had just arrived there on business a few hours before. She and I have become great friends. Lisa said, imagine our first Face to Face meeting in the bathroom...and Rachel pointed out she had actually met all of her best friends in the bathroom! DESTINY!

I will be honest, I was completely distracted by all that was about to transpire (little did I know how it was going to turn out). There was no awkwardness, but my mind was truly swirling. We arrived at HOB and I figured out how to get the wheelchair inside, then we proceeded inside to let them know we were there. My friend Michelle and her family were already there, as was another friend Crissy. Our HOB contact person was NOT there, she had a colicky baby at home. It all seemed disorganized to me at first,but at least they were expecting us. They also handed me a stack of tickets (Complimentary face value) with Rachel’s name on it from Ticketmaster, just for fun...how COOL was that!?!



Shortly after we arrived, My friend Marv and his son Jonathan showed up. I had NEVER spoken to Marv before (he lives in SC), but he had found out about us from my friend Kathy and contacted my friend Lisa B (Is everybody keeping up with all my friends and connections?? lol). We had a LOT of people come out to support us and Rachel). He had a plan to be in Disney anyway to meet some friends, so Marv decided to try and make it to the HOB. We were SO glad he did!!! We now have a wonderful new friend because of it (He got us Nutcracker tickets for LIsa to see the ballet)! We already had a pretty big crowd when my friend Sherri, her DH and her sweet daughter, Morgan (a Disney Cast Member) arrived. As you se it was getting quite crowded and confusing and we still didn’t have guitars for Rachel or Pete!

Someone came over and told us to go outside to the side patio to tune up, the band Rachel was opening for would be out shortly.

Megan and Lisa joined us outside while everyone else was seated at their tables inside. Here are all of us “girl’s” goofing off and snapping pics.

They brought out the loaner guitars and we realized that no matter what the cost, we should have brought theirs. We were Thankful, but I don’t think anyone realized just how old the guitar they brought Rachel was, nor how old the strings on it were...her fingers were BLACK by the time she had finished playing. As for Pete’s, it was NOT an acoustic-electric...just an acoustic, which made it nearly impossible to hear while they played and we were right beside them as they warmed up! All of a sudden the band and one of the mangers came out to meet Rachel and Pete and it became REAL!! VERY REAL! These guys were professionals and it showed in the way they spoke. They also LOOKED the part in jeans and shirts...Rachel wanted she and Pete to have more of a jazz look, so she picked out Pete’s outfit and I must say they DID look sharp! The band members were just as nice as they could be and were willing to do whatever Rachel wanted/needed of them. We kept seeing guys come to the window and stare at us from inside...we found out later it was the road crew for the band and they weren’t nearly as nice...more on that later....
























It was getting close to eight and one of the road crew came out to tell us they were ready for them to start the show. We asked about the sound check and were told it was taken care of....

---

Tuesday, February 14, 2012 9:19 PM EST

HAPPY VALENTINE'S DAY!!! I hope you all had a wonderful day. Please keep my brother in your prayers, he had 10 to 12 teeth removed today (My parents weren't quite sure how many).

Today is also another type of heart day... It is Congenital Heart Defect Awareness Day. CHD’s are the reason Lisa was eligible for a Make a Wish Trip. I have heard far too many times how lucky we are we got a free trip to Disney. Yes, we were VERY Blessed, NO ONE had to do that for us. However, I disagree on it being “FREE.” We have paid a VERY high price to be eligible for this trip...

I have vowed to always educate about CHD’s...it might save a child’s life, it isn’t spoken about as much as cancer and parents should be aware it CAN happen in your family...it is the NUMBER 1 Birth Defect!

CHD’s FACTS:
Congenital heart defects are structural problems with the heart present at birth. Defects range in severity from simple problems, such as "holes" between chambers of the heart, to very severe malformations.


Anyone can have a child with a congenital heart defect. Out of 1,000 births, nine babies will have some form of congenital heart disorder.


About 650,000 to 1.3 million Americans have a congenital heart defect.

Approximately 40,000 babies are born with a defect each year.

Congenital heart defects are the most common birth defect and are the number one cause of death from birth defects during the first year of life.

Nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers COMBINED.


Successful treatment requires highly specialized care. Severe congenital heart disease requires extensive financial resources both in and out of the hospital.


The presence of a serious congenital heart defect often results in an enormous emotional and financial strain on families at a very vulnerable time. Patient/family education is an important part of successful coping.

We are VERY blessed Lisa looks very normal and healthy; unfortunately her defect is very complex and exceptionally rare (between 0.24nd 0.46f all congenital cardiac anomalies).

It HAS changed our lives.

---

Thursday, February 9, 2012 7:01 PM EST

It has been a busy two weeks and I am just going to give you the highlights of the past few days. Lisa saw the Orthopedic doctor yesterday. Lisa needs her cast a bit longer than they originally thought (at lest five weeks), we return the 27th (the same day as Pete's big interview) for more x-rays and to determine if the cast can come off. He said she will be in the brace for "quite a while" once she does get it off. Lisa's bones aren't healing as quickly as he had hoped.

This morning Lisa had her CT angiogram on her kidneys. She was a trooper, although she got VERY emotional about the IV (and she has to get blood drawn tomorrow)...that seems to be happening more and more lately...it was the longest prep for the quickest test on record...and now we wait... While we were waiting I noticed her leg brace is cracked...not the titanium shaft, but the plastic around it, so she has to go to morrow to get it looked at. Thankfully it is still under warranty!

Pete took her to her next MD appt and Rachel and I took Bandit to HIS appointment. His platelet count was great and his anemia has resolved. We return in two weeks for him and will start the process of weaning the meds, which is good news because they are charging us as of the last batch of meds and NO ONE told us. Please know, I am grateful for all they have done, we just have several bills looming (I know, don’t we all). It WILL work out. I don’t think the Vet knew they told us they are going to charge us though, when I asked her today if they could still provide us with the meds she said absolutely; however, when I went out to make Bandit’s follow-up appt the cashier told me...I didn’t pay the bill today either....

Lisa’s brace has cracked (not the titanium, but the plastic)...THANKFULLY it is still under warranty and they ordered a new one today. Pete is taking David and Lisa to the hematologist tomorrow and I am picking Christian up for the weekend. I can’t wait to see him. I can’t BELIEVE he graduates college May 5...so much has happened in the past 4 years...

---

Monday, February 6, 2012 12:22 PM EST

Oh The Places You'll Go...


Lisa and I left the others riding the Dueling Dragons (They actually rode both sides and loved them BOTH). Lisa and I headed towards Seussland. It was a gorgeous (HOT) day and we were just so happy and grateful to be in Florida! I was smiling, singing and praising God all of the way. A very nice lady at a vendor booth saw us coming and stopped me. She wanted to say Hi to Lisa and give her a special bracelet...It was so beautiful and kind of her and Lisa was surprised and happy...how absolutely amazing and unexpected! Lisa LOVES her bracelet.






We continued on and before we knew it we were transported to the wonderful land of Seuss! Once again I want to say how kind they were to us in Universal! Most everyone we encountered went out of there way. Lisa saw Thing 1 and Thing 2...we LOVE these characters and LOVE the Thing shirts...if we ever go back, maybe we will have some made. I also saw one they sold there about the Dad and all of his things (children). I can’t quote it but I loved it...but not $30 worth! I got in line and the next thing I kew, I was being pulled in front (the line wasn’t TOO long, so I didn’t feel too guilty).

[















The handler for these characters was amazing and he asked me if I would like Lisa to meet the headliners for Seussland...WOULD WE???!!??? I explained we had 4 more with us battling the dragons and he said that was perfect. He directed me to Circus Mcgurkus (a restaurant) and told me to enjoy the show, they would come get us. I called Pete, because the show was about to start...he ad the other children were on their way over and joined us just as the show began. It was cute, a lady narrator reading a book and the characters all came out to act out the book. JUST before the end of the show, my new friend came and took us to an shaded, outside covered area to await the characters...and we were NOT disappointed! Several people saw them interacting with us and tried to join in; however, they sent them away, explaining that Princess Lisa and her Royal entourage had a private meet and greet going on. We had a FABULOUS time and they spent at least 15 minutes with us...it was so cool! It rally is amazing how they can communicate so much and not say a word! The Grinch “fell in love with me” and commiserated that DH was smelly, not as handsome as he, etc...The Things were so fun and playful (in spite of the small area) and The Cat in the Hat and Sam adored the girls...it was exceptionally memorable, as you can see.



































We had seen a ride that went through Circus McGurkus and I HAD to ride! They took us right upstairs and we were in the next batch of cars...this ride is up in the air and is very whimsical..we loved it! it is called The High in the Sky Seuss Trolley Train Ride.













































Our next stop was to ride the Caro-Seuss-al and that was a lot of fun. By then we were starving (breakfast had been many hours earlier) and found those pretzels Pete and Christian couldn’t get before when the cart was closed. We had a nice break (this was our lunch, such a yummy treat).
































Pete, David and Rachel headed off to ride a few roller coasters (I know one of them was the Hulk) and Christian decided to stay with Lisa and I in Seussland. The Cat in The Hat was closed for renovations, so we went in search of more fun. We rode One Fish, Two Fish, Red Fish, Blue Fish over and over and over...Lisa LOVED it and it cooled us off because you had to try and dodge the spitting fish and sometimes she would aim it just right to hit Christian or I...she had a ball. We left there and went to the If I Ran the Zoo playground. She made Christian play for awhile, then it was time to meet back up with Pete, David and Rachel. The consensus was we were all very tired and we had a BIG night ahead of us!

We made the LONG trek back to the car (seemed closer going back for some reason, even though we went straight to the parking deck instead of having Pete pick us up. Honestly, the drop-off is almost as far as the deck once you go up the elevator). We went back to our Villa and the boys walked over to Katie’s Kitchen to get sandwiches. We found out later we could just call and they would deliver right to our door...Gosh I miss a place where I can call for food and someone else does the cooking and paying...

The girls got comfortable and took a rest/nap and I laid out their clothes for our big night at The House of Blues...The guys came back, satiated with sandwiches and Ice Cream and watched some TV while I did the laundry. Time was racing forward and all I wanted it to do was slow down...

---

Sunday, January 29, 2012 11:44 PM EST

How about more news from our trip...



When I last left off we had been transported from the Muggle (those who are NOT wizards) world to the streets of Diagon Ally and I must say it was quite realistic (and yes, the snow is on the roofs throughout the year...because it is typically COLD when the students are at Hogwarts...but the day we were there it was sweltering) It was simply wonderful to see...but FAR too crowded to truly enjoy going inside the shops, etc. EVERYONE was stopping and starting to just stare in awe and didn’t mind jumping right in front of you, disregarding the wheelchair...but I have been navigating Lisa through crowds for a lot of years so we made our way forward till we saw a shop with a HUGE line! When I inquired what was inside to make people stand in line for over 90 minutes (the posted wait time), I was told it was a show for the wand shop and they took our name and told us to come back in about 45 minutes to be admitted and enjoy the show...SCORE! We proceeded onward to the Flight of the Hippogriff and were escorted to the front of the line and it was a BLAST! Lisa LOVED it!

We were in high spirits and went down the hill and traveled back to the castle to find out what was going on there. We were out front looking for exactly WHAT this attraction was...I later found out it was called Harry Potter and the Forbidden Journey. We were surrounded immediately by excited Prefects (Students of Hogwarts for Muggles not in the know).They truly LOVE MAW kids children at Universal. I was inquiring as to any restrictions for heart patients, g-forces, etc...what I SHOULD have been asking is what exactly is about to happen because I will be honest with you, it scared the daylights out of Rachel and Lisa and Christian didn’t enjoy it at all...Pete and David had a blast and wanted to ride again. Pete, Christian and David were in one ride unit together and Rachel, Lisa and I were in another...I spent the entire time yelling at the top of my lungs for the girls to relax and just close their eyes...but it was so loud they couldn’t hear me....I couldn’t enjoy it because the girls were so freaked out...but I WOULD have loved it, no doubt! The entire way out all of the Prefects asked Lisa how she liked it...and she told them, to their dismay. It truly WAS well done and I hope to go back someday.

It was now time for us to go back to the show so we went back and arrived just in time to be escorted inside and LISA was picked to be in the show...she was so excited and happy and you can see the wonder on her face...it was JUST like the books when a wand is picked by Olivander for the new Hogwarts student. Look at the joy and wonder on her face...she LOVED it!

It was all so magical and Lisa was thrilled, especially when he presented it to her and told her it was his gift to her....it was magical up to the point we were ushered into the shop and the person manning the door told me I had to get in to the madness of the line to pay before we could leave...it definitely was NOT a gift to Lisa; however, there was NO WAY I would NOT be able to pay for this wand...when I inquired if she would be disappointed if we didn’t buy the wand she was so crestfallen I thought she would cry...”But Mama, the wand PICKED me”...of course it did! I put a smile on my face, had Pete take the children out of the shop and waited in the fifteen minute long line to shell out the $32.50 (plus tax) for the wand that hasn’t been out of the box since I presented it to her outside the wand shop....I was chatting with a young man that worked in the wand shop while I was waiting in line. It turned out he was a manager (he looked about 17). We said our good byes after I paid and went out to give my delighted daughter her new wand. We were looking for the butter beer cart when I heard someone calling out to me. I turned around and it was my new friend from the wand shop. He wanted to treat us to Butter Beers! We were only planning on getting 1 of each type (regular and frozen), to save money; However, he provided all six of us Butter Beers of our choice. I must say, the frozen one was my favorite (I KNEW it would be, wish I had one now) and was happy to have one all of my own...it was HOT! We found a shady table and pulled up chairs to relax and enjoy. Pete and Christian went in search of pretzels, so they were gone when I thought to snap a few photos. These are all that I have of that interlude.















I had just sat down when my phone rang (That is why I forgot to take more pictures). It was my mysterious stranger, in a MUCH better humor and with AWESOME news. The surprise for Lisa COULD be done the Saturday before we left town, instead of the next day...which was so exciting and such a relief...and meant I needed to make a few MORE phone calls! We finished up our delicious Butter Beers and took off for The Dueling Dragons ride. It looked AMAZING!!!! Lisa couldn’t ride which means I didn’t either...we saw the others off and headed for Seuss Land...what adventures were about to happen??? Stay Tuned! And yes...I will reveal the mysterious caller...eventually...And before I get flamed or anyone thinks I was looking for a free wand...I was NOT. I had NO IDEA that this was what would happen when we were given a number to come back to the show. I would think that there should be some type of notice that someone from the show WOULD be picked and in order to have the wand that picks you become your personal property, you would be expected to pay the $32.50+ price tag (I was told by my new friend that ALL of the wands in the shop cost $32.50)...call me unprepared, naive, whatever...but, Lisa would have been just as happy with a cheap demo type wand that is presented to the show participants for a fraction of the price...and then you could pay for a more expensive one if you were so inclined. And NOT buying the wand was NOT an option...if you are a parent (ESPECIALLY of a Wish Child) you will understand.









My take on Harry Potter at Universal??? I hope to go back someday...I loved it!

---

Wednesday, January 25, 2012 10:10 PM EST

This has been a very tough week and it isn’t over, unfortunately. We have had an abundance of specialist appointments and the news has been a mixed bag. The positive news for today is that there weren’t any unexpected surprises at the Neurology appts. for Rachel or Lisa.

The Nephrology appt. brought news that Lisa was consistently hypertensive the entire 24 hours she was on the monitor. To be honest, I am NOT surprised. This has been an ongoing question of mine for a very long time. It doesn’t take a genius to see her BP is consistently elevated. During the Ambulatory blood pressure monitoring, Lisa’s pressures were quite high for an 8 year old ...Frankly it was high for an adult. Her systolic numbers were 130 to 140 and many times as high as the 150’s. it should be less than 118 for her height and weight. Diastolic numbers were 70’s to the 90’s...that should be less than 76. Clearly she is hypertensive. We will start meds. as soon as he clears it with her cardiologist locally and at CHOP. He promised to have us an answer no later than tomorrow...HA! I tried to get copies of her lab reports again today and they STILL couldn’t provide them. They assured me they would be in todays mail...we shall see. She also needs to have a CT angiogram done. Although they are only 80 to 90 percent effective, it is less invasive than an angiogram and she will not require sedation, which is a special concern for Lisa. If that doesn’t turn up the cause, then they will do the angiogram...but first they will see if the meds help He said sometimes the hypertension is idiopathic (unknown cause) and he doesn’t want to put her through that if it isn’t necessary. He is also quite concerned about the number of broken bones she has had. As it turns out, one of his partners is actually a well-respected MD in this field, in addition to his nephrology practice (his clinic is called “Stones and Bones”). He worked at Duke Hospital for a lot of years prior to coming to Charlotte. He wants to review Lisa’s history with this gentleman, so it looks as if we will be adding yet another specialist to the mix, as well as more testing. I have told you before, I do NOT believe in coincidences. This was actually the answer to prayer, I knew at our hematology appt. Friday that Dr. B would be VERY upset that Lisa had another broken bone and she would have been telling me LIsa needed further testing...now I can get her opinion on this Doctor and make sure this is the right choice for Lisa. She is my most beloved MD for the children, my friend and confidant and I trust her implicitly. She has NEVER dismissed any worry or concern I have...and her confidence has always been well-placed.

It is just one more worry that my sweet daughter does not need. She has so many different diagnosis... just one would stop most people in their tracks...my darling handles it all with a smile and grace. I must admit earlier today, LIsa was having a rough time. On the way to the MD she told me she was dizzy. Her BP was slightly elevated, but not anymore than any other time; however, I knew for her to tell me was huge. Add to that the doctor doesn’t have the most pleasant breath (I suspect he is a coffee drinker and he talks to us the entire time he is examining her...right in her face). She was turning her head and had her hand over her face to block him and I KNEW why. I honestly nearly burst out laughing. Pete said I kept it together, but it was so funny. That was the beginning of Lisa feeling horrible though and when I asked her if she was okay she said she just wanted to get out of there. VERY uncharacteristic for her. She also didn’t feel great at voice class; however, her teacher was wonderful. She came home and spent a while resting on the couch. I am happy to say this evening I FINALLY heard her giggle while she was playing with Rachel. Tomorrow she has sleep neurology and hematology on Friday...that makes 7 MD appts for her this week...it is simply to much for a little girl.

As for Bandit, he continues to improve, While he is still anemic, his numbers are slowly getting better. He will be on three of his meds for a good while longer. Thankfully, the vet is able to provide two of them for us. We are very thankful for our blessings, just tired tonight. I hope I shared all I wanted to with you, there is a lot, I know. Have I forgotten anything???

The Disney update is in progress Dolly :o) Thanks for asking...I just need time to write....but the pictures are ready to go!



Monday, January 23, 2012 9:03 PM EST


Lisa fell Saturday while she was dancing with the WII (I wasn't home, I had taken David to woodworking). Rachel heard her crying softly in the classroom and told Pete. When I arrived home I was sure her arm was broken. She was weepy all day (NOT like her, unless she is hurt) and when she turned her arm a certain way it caused great pain. We didn't take her to the ER because experience has shown us that all they will do is splint it and send us to the Orthopedic doctor during regular hours. I had a splint, so I immobilized it and we took her today. It is broken. They sent us to the Ortho doctor and Lisa is in a cast once again for 4 weeks and then a splint for only the good Lord knows how long. She picked two colors for her cast...blue and pink. She wanted turquoise; however, it came out much more blue. As always, the Princess is full of smiles...Mom, not so much! Could I have ONE WEEK in my life without drama? That is all I ask...I just remind myself it could ALWAYS be worse...

My neighbor still hasn't fixed our mailbox, nor has she made any attempt to. The nephrologist called Friday and wanted to see Pete and I ASAP to go over the results of Lisa's 24 hours BP monitoring. ASAP to him means this Wednesday. Bandit sees the Vet once again tomorrow. We had three MD appts today, 2 tomorrow, 1 Wednesday, 2 Thursday and two Friday, plus David gets IV iron...Thank goodness tomorrow is another day, washed anew!

---

Monday, January 23, 2012 2:02 PM EST

This is going to be very quick, we leave in 10 minutes for the Orthopedic doc...Lisa's arm is definitely broken...again. I will update later.

---

Monday, January 23, 2012 2:02 PM EST

This is going to be very quick, we leave in 10 minutes for the Orthopedic doc...Lisa's arm is definitely broken...again. I will update later.

---

Wednesday, January 18, 2012 7:39 PM EST

Here is a quick update on Pete’s interview and Bandit:

The vet said that if we had seen Bandit’s intestines on a scope or scan last week they would have looked raw and bloody. She was so surprised and thankful that he was able to keep the baby food down and said that typically even baby food causes such a problem in the gut when it is like that, and will cause internal bleeding. She said the fact he didn’t vomit up his food or medicine also helped save his life and she simply couldn’t explain why he did as well as he did. I can...your prayers were heard and I THANK YOU! She said when this first happened she was worried Bandit had cancer. Now she is certain it was auto-immune in nature...I may or may not talk about that another time...All I can say again is THANK YOU for helping save our sweet dog, God heard our prayers and no matter what else happens, we are so happy to see Bandit looking/acting/feeling so well!

Pete had an awesome interview yesterday and they LOVED him. They are expanding their business/product line and in search of the right person to move forward with this business venture. They are going to be putting a lot of money and resources into this and want to have someone who will be there for the long haul...they loved the fact Pete doesn’t job hop. We have prayed for a company to recognize Pete’s loyalty/honesty/integrity. They are in NO hurry to do this though, hoping to really explode the market in 3 to 5 years. They are planning on bringing someone in now, to start learning the background of their business. They are another International Company (so were his other jobs) and the Company President is flying in to the USA in the next 3 to 4 weeks and wants to meet Pete then. Honestly, they could have taken Pete’s resume and written the job description for this job. The recruiter called yesterday VERY excited and I could here her as she told Pete how much they loved his energy and how impressed they were with him and how well he carried himself (former Marine, don’t forget). So now we wait; however, we know God’s timing is perfect. We MUST be patient and we are trying to keep things going. We were already depleted, so are BELIEVING GOD is in control. I have no other choice...so I BELIEVE!

And I would like to post another Wish Trip Update. Jen J. If you see this and haven’t gone to Disney yet...PLEASE call me on my home number.


We woke up on October 14 with HIGH anticipation. It was our first day to have breakfast at GKTW, Scooby was making an appearance in the Castle of Miracles (LOVE SCOOBY! He was on my one and only lunch box growing up), we were going to Universal Studios for the very first time (We are HUGE Potter and Seuss fans) and that night Rachel and Pete were opening the show at HOB!

We had a DELICIOUS breakfast at the Gingerbread House and headed over to wait in the line to see Scooby...as we approached the door, my phone rang. It was a man I had never heard of asking me what we were doing the next day. I explained that I would be meeting friends and we planned a down day at GKTW so Lisa could rest after our full Friday. He told me he wanted me to cancel our plans and be at MK at 2:30 the next day for Lisa’s special surprise. I told him we were in line to see Scooby (I had stepped outside so I could hear him) and asked if I could call him back. He kindly told me he would call me back in 15 minutes, he was inaccessible. I went back inside just in time to get pics with Scooby. It was very quick and hurried and I was frazzled about what to do about the next day...

We left the castle of miracles and I just had enough time to try and fill Pete in on what was happening (I didn’t want the children to hear) when my phone rang. Let’s just say that there was a lot of back and forth and I was told this was a chance of a lifetime so whatever I had to do, I needed to change our plans...which I said of course we would! (Let me just say now...this was highly stressful and I really didn’t know what to expect. I was worried how our meeting would go when we finally DID meet this gentleman...I didn’t know who he was, he continued to not tell me his last name or phone number and we actually had a few of our friends think he might be pulling my leg. He actually WAS a Disney employee AND he was the most kind, sincere, genuinely nice person...he explained later he was just in the zone and the special surprise really WAS a chance in a lifetime! He wasn’t trying to be gruff. The second Saturday we would be in Florida would be PERFECT for the surprise that he had in mind for Lisa I told him and explained why briefly. The problem for Disney for the following Saturday had been there was a group of veterans who hadn’t let him know from several months before THEIR plans and when I suggested he ask them, he was just surprised. Pete’s and my point was they had known for months they were going to get to do this once in a lifetime event...we only had a days notice. He realized after he thought about it that I was simply concerned for my Lisa...BUT, we didn’t want her to miss out on this opportunity. In addition to my concern over my Lisa being exhausted, I had promised time to Lisa B and Megan for Saturday afternoon and I didn’t want to mess up THEIR plans, they came a long way to see Rachel play at the HOB and I felt I needed to give them more than one night. We were also supposed to go flying our first Saturday in Orlando AND we had friends driving up from Ocala for lunch...it was going to be hard to rearrange everything, but doable...EVERYTHING was now going to have to be canceled/rearranged to ensure one of LIsa’s wishes would come true. I wasn’t trying to be ungrateful, I am the Queen of Organization...it is the only way I keep things running around here and need for organization doesn’t always fit in to others plans. Switching gears can be a major upheaval and requires some brain shifting

We went back by the villa, I got some phone number and we headed to Universal. Pete dropped the children and I off at the handicap drop-off for Universal...let me just say...it didn’t put us much closer to the entrance of the Universal parks than if we had simply parked with Pete. We did stroll in at a more leisurely pace though. It gave us time to take a few pictures as we walked in (notice the one with baby Lisa from the Simpson’s and Lisa (made us laugh. When Lisa was a baby in ICU one of the residents asked us if we named her after Lisa Simpson...um, NO, I really didn’t even know who Lisa Simpson was...and didn’t realize that show was still on TV when Lisa was born. Yes, I live in a bubble at times).















A kind gentleman even took a few pics of us while we waited on Pete. I took the rest. The sun was BRIGHT and it was VERY hot that day. Notice what looks like a fuchsia feather in Lisa's headband. She found this pretty little flower blowing around these plants in Universal and stuck one in her hair.
























Pete FINALLY made it over from the parking deck (It is quite a hike) and we headed in and STRAIGHT to Harry Potter!!! While I appreciate the fact they made it to closely resemble the description in the books, they definitely did not take in to consideration the crowds OR navigating them with a wheelchair. Our first stop was to be transported to Diagon Alley and the conductor didn’t disappoint! He spent time weaving a story of our travels into the Wizarding World and Lisa was captivated, as you will see.












As we walked from the front of the park to HP, my phone rang in that I had two messages...I must have been in a dead cell zone, because I missed them. One was Nancy from the front desk at GKTW...she and I had become friendly (SHE was the ring leader in getting our villa decorated for Christmas) and I told her Rachel was playing at the HOB and she wanted to come. She had called HOB and they told her Rachel wasn’t playing until 11 PM...I never did get to talk to her, she was out from the desk when I called and my phone was misbehaving, so she missed the show and was very upset with herself for not listening to me that Rachel was playing at 8 PM. The second call I missed was from my very mysterious Disney Gentleman...he told me he couldn't leave me a phone number and would try me back before noon, he needed to speak to me urgently...it was 10:30 and I was worried I would miss his call...so, we started our trek through HP but I was VERY concerned...I did NOT want to miss this call! I also didn’t want to miss HP!!!We have FINALLY ARRIVED!!!! Stay Tuned to my next update...

---

Monday, January 16, 2012 9:23 PM EST

Quick update on Bandit, we just got home from taking Christian back to school and David to woodworking and have to get the girls to bed. (They have 10 minutes to "unwind" before prayers and lights out).

Bandit is doing REMARKABLY well, the only issue is continuing anemia, although his numbers had improved since Thursday. His RBC's, HCT and HGB are both low. His platelet count has gone sky high...probably due to the prednisone or excitability. He had to get stuck twice today, his anemia has done a number on his veins.

We will start weekly visits now unless we notice anything "weird". We are so incredibly Thankful to you all for your kindness and your prayers.

We have three MD appts. tomorrow, plus Pete has a face to face job interview...plus Lisa has her favorite...ballet!

To cap our day, shortly after David and I left this afternoon, my neighbor backed right in to our mailbox and wouldn't have even stopped if Christian and the girls hadn't seen her and started yelling to get her attention...I am thankful it wasn't one of the children! Got to look for those blessings.

Now I am off to put the Princesses to bed; however, I couldn't leave you wondering how the Little Miracle Dog was doing.

---

Thursday, January 16, 2012 8:44 AM EST

Sorry for the lack of updates, SO much not spoken is going on here. I know you are all praying and I Thank you for that! Bandit has a vet appt. late this afternoon, Christian has to go back to school and David has woodworking. THANK YOU to those who have time to sign in, the messages are so uplifting.



Thursday, January 12, 2012 9:44 AM EST

Bandit is a Miracle Dog! That is the way the notes on Bandit’s discharge papers ended today. There truly isn’t any other way to say it...last Thursday we received the call Bandit would not live, they would give him a blood transfusion to try and give him some energy so he wouldn’t be miserable. (For those who have asked...transfusions for dogs aren’t that safe, there isn’t any way to truly test it. They DID do a type and crossmatch and our incredible vet used her own dog as Bandit’s donor). I had my moment of fear and worry then I went to everyone I know and asked for prayer, which many of you freely gave. By Thursday evening (1-4-12) we had peace and Bandit looked amazing. Fast-forward to Monday...we knew that Bandit wasn’t well and on our return to the vet she said he had NO platelets. She wanted to try one more (EXPENSIVE) medication on him and she told me she honestly didn’t have any hope or expectation that it would work. But We did! We even came under attack from several sides that obviously weren’t from the Lord...but we stood firm in our belief that GOD is in control and Bandit WOULD be saved and MANY of you stood firm with us in that belief... I was encouraged, empowered and had renewed belief that Bandit WOULD defy the odds and prove miracles are real.

We had the “last resort medicine” compounded at the apothecary and started it Tuesday afternoon, the soonest they could make it for us. On Wednesday evening, Bandit honestly seemed like his old self. TODAY Bandits platelet count is NORMAL...you read that correctly... NORMAL! His counts should be between 148 to 484. Monday they were ZERO...today they are 374! He still has a low RBC, hematocrit, hemoglobin, and some lab values remain too high or too low...but EVERYTHING is improved from Monday, Praise God!

He will need to continue on medications for months, including two expensive ones that we must pay for out of pocket...we WILL figure it out, Bandit deserves to be healthy, he has fought hard enough.

It was like a party when we picked him up today. Dr. F was in surgery; however, the staff said this morning that she was carrying him around the office showing him off and telling everyone what a miracle he was and she wanted some of my Faith. They said we had the best prayer warriors, there WAS NO other explanation.

Tonight, Bandit is tired...but happy! So are we! We have a long way to go...but, we have a lot to be thankful for. After all, Bandit IS a miracle dog! Our vet said so...in writing!

Now we work to help Lisa feel better! According to her: “I am perfectly fine”. If only we all could be like that!

Here are some pictures of my Miracles! PRAISE GOD for what HE has done!

Thursday, January 12, 2012 6:34 AM EST

It was a long night, Lisa's BP monitor went off every thirty minutes and while not painful, imagine having your BP taken all day and night long, every thirty minutes (and often TWICE if the reading aren't what the machine liked). I sat up with her, because she couldn't do more than doze for a few minutes at a time...we are looking forward to 11:03! Her starting pressure at the nephrologist was 155/80. Later in the day the the hem-onc clinic it was 153/76...unfortunately, the monitor only took internal readings so it will be another WEEK before we have results, or so they said...these are the same people who couldn't find my daughter's chart yesterday! I was NOT a happy Mom! Our hematologist was able to track down some of the results (ALL NORMAL); however, several of the blood tests aren't yet back and NOBODY seems to know what happened to Lisa's urine for the 24 hour test...Let's just say I was NOT a happy person in our dreary, rainy city yesterday!

I WAS happy when I got home...Bandit LOOKED so much better, I hope that isn't just wishful thinking! He sees the Vet this AM and I am praying for his platelet count to at least HAVE some!

These aren't the best of pics; however, he asked to have his collar on so Rachel obliged him. His regular collar was too tight (possibly because of the swelling from the prednisone, which I worried MIGHT be why he felt so good and not due to his blood count). He even wanted a treat, which he hasn't wanted in over a week! He wasn't up to tricks; however, he did listen to his commands and try to respond...my pics aren't good (I grabbed the old camera); however, you get the idea!












































Check back later, I will try to update after the Vet appt.

---

Wednesday, January 11, 2012 6:28 AM EST

Just a quick update for all of you who are checking in on Bandit. He LOOKED as if he was having a slightly better day yesterday and we only had to syringe feed him twice, he ate the baby food from our hands and a little off of the spoon. We also got him to eat some turkey, which made us all happy. Is he better or is it just hopeful thinking? We will not know until Thursday's visit to the Vet when he has more labs, poor sweetie, his little legs are so sore from all of the tests. My parents and brother stopped by between my appts yesterday and thought he looked great. My brother said "He looks so much better than he did in the pictures". He was shocked when I said the pictures looked GREAT compared to how he looked last Wednesday and Thursday...those pics were Bandit improving...I called NC state back yesterday and left another message, still no response. Bandit is sleeping with the girls with midnight and 4 AM feedings and I KNOW all three of them are happier to be together! So far we have managed to have someone with Bandit at all times, by switching off. As I look for the positives in our situation, I can say a prayer of PRAISE that Pete has been home to help me through this crisis with Bandit.

Pete's phone interview went well, they want to bring Pete in to see their facility "in the next week or two". In the meantime, the search continues.

Thank you again to everyone for your most kind and uplifting words of comfort...and for your prayers!

Today the schedule is a bit tricky to keep coverage for Bandit, he might actually have to ride in the car for forty minutes (which he typically LOVES). Lisa goes to the nephrologist for her 24 hour BP monitor (and I WILL be getting copies of the labs, even if I have to put on my mama bear suit). The cardiologist called yesterday, Lisa IS having runs of tachycardia (this is new) and bradycardia (she is typically in the low 40's to 50's)...but "Not enough documentation yet to determine we need to do anything more than watch and wait"...they better be right! Lisa also has voice, David engineering and David and Lisa both have hematology appts. Pete of course will be sending out more resumes and applying online to more jobs...

Once again, THANK YOU for being here, even when I appear MIA. I AM reading and so encouraged!!

---

Monday, January 9, 2012 1:13 PM EST

Bandit had a marvelous weekend and even did something so cute/surprising last night. Lisa was sad because Christian had to go back to college (We all are sad about that). She was crying a bit and was on may lap, asking if Bandit could sleep with her. I was rocking her, trying to comfort her and explain that once again I would sit up with Bandit and he would be better off downstairs where I could better care for him. I had made him a playpen of sorts out of a huge Disney box we had stored in the garage. It is rather large and the sides are 18 inches tall, even with his bed and blankets inside. Bandit heard Lisa crying and was standing on the side of the box looking at her. The next thing we knew he had jumped OUT OF THE Box and was in my lap, licking her face. It was such an encouragement. We let him sleep with the girls and I did the midnight feeding/meds and Pete did the 4 AM shift. We are only doing hourly feeds/meds 8 am till 9 pm now.

Bandit had to spend this morning at the Vet office (We just returned home actually) and I am very sad to say his body is NOT making platelets. The vet is starting one more medication tomorrow (it has to be formulated since he is so small and the apothecary will not have it ready until tomorrow at noon). Dr. F is not holding out much hope and is worried about side effects. Once more I come to you and beg you to pray for Bandit and ask that he get well. We have been so blessed and thankful to have the past 5 days with him, to be able to see him looking so much more like himself and we just want to continue seeing him be able to spread his joy and love with so many others, ourselves included. We love him. On the positive side Dr. F said he has had a MASSIVE regenerative response, which she can’t explain. I can.

My last effort has been to contact the Vet School at NC State. That was a suggestion of my pediatrician...can you believe she actually had her nurse call me this AM to check on Bandit?!? I don’t know if they an help us or how much something like that costs. All I know is, I have to try EVERYTHING that I can. I know some people think dogs aren’t that important. Bandit is a HUGE part of our lives and he is definitely the seventh member of our family. Please, keep praying for his tiny body to make platelets! THANK YOUvAGAIN for all of the kind messages. I had planned to respond to some of them yesterday; however, I was simply exhausted and took a short nap while Pete was gone to take Christian back to school...Taking care of Bandit truly has been round the clock care for him and last night was the first night in more than a week that I slept more than two hours. I feel stronger today and am fighting off the sadness that wants to creep in. I KNOW God is in control. I truly AM thankful for all of our time with Bandit and will do whatever it takes to help him. PLEASE PRAY!

---

Saturday, January 7, 2012 7:27 PM EST

Pictures are worth a thousand words.






Saturday, January 7, 2012 1:07 PM EST

Please check journal history for anything you missed, including photos. God is GOOD!

I wanted to give a brief update and share a few more pics from Friday with you. Bandit is doing remarkably well and there is no explanation, other than God. I realize some of you thought the pics looked bad and it is difficult to see his personality shining through; however, let me assure you he looks remarkably better in those pictures than he did late Wednesday night and Thursday for the majority of the day. His hourly feedings continue and he has medicine from 6 in the AM until 9 at night every single hour and feedings through the night. I completely lost the last week and I am so far behind on so many things..yet, I am happy! We had a celebration today, it is just such a lessing to see him howl when the phone rings, to BARK when the doorbell is rung to have him ask to go outside to do his business. He still has blood in his stool...other than that and his extreme fatigue, he is almost back to himself...although he has a long way to go, it is evident. He looks like himself again though for the most part, what a blessing! He is even drinking some of his water from a bowl! We had some drama last night after he went out to void, his extension tubing pulled away from where they had it taped to the IV catheter (of course, I didn’t know at the time what happened, we thought the IV had pulled out. Called the Vet on call and they told me to pull the IV and stop the bleeding which would probably take awhile. Thankfully I have a bit of experience in stopping blood flow and Bandit is fine now. He is in his bed, sleeping after his last meal..I am going to try and catch a few minutes myself, before he needs to eat again. THANK YOU for all of the support, encouragement, suggestions and messages of happiness...I am humbled and so very thankful. PLEASE keep praying for his complete recovery.

Notice the book Lisa gave Bandit to keep him busy. He LOVES to read! This book is about dogs, one of his favorite subjects.













































LONG time readers might recognize these photos. I wanted to remind you how much Bandit has always loved books...these two pictures were taken the day we adopted him. He crawled right up on Lisa's book and in to her arms so she could read to him and he has been doing it from that moment forward. Aren't they both adorable?!?

---

Saturday, January 7, 2012 3:07 PM EST

Please check journal history for anything you missed, including photos. God is GOOD!

I wanted to give a brief update and share a few more pics from Friday with you. Bandit is doing remarkably well and there is no explanation, other than God. I realize some of you thought the pics looked bad and it is difficult to see his personality shining through; however, let me assure you he looks remarkably better in those pictures than he did late Wednesday night and Thursday for the majority of the day. His hourly feedings continue and he has medicine from 6 in the AM until 9 at night every single hour and feedings through the night. I completely lost the last week and I am so far behind on so many things..yet, I am happy! We had a celebration today, it is just such a lessing to see him howl when the phone rings, to BARK when the doorbell is rung to have him ask to go outside to do his business. He still has blood in his stool...other than that and his extreme fatigue, he is almost back to himself...although he has a long way to go, it is evident. He looks like himself again though for the most part, what a blessing! He is even drinking some of his water from a bowl! We had some drama last night after he went out to void, his extension tubing pulled away from where they had it taped to the IV catheter (of course, I didn’t know at the time what happened, we thought the IV had pulled out. Called the Vet on call and they told me to pull the IV and stop the bleeding which would probably take awhile. Thankfully I have a bit of experience in stopping blood flow and Bandit is fine now. He is in his bed, sleeping after his last meal..I am going to try and catch a few minutes myself, before he needs to eat again. THANK YOU for all of the support, encouragement, suggestions and messages of happiness...I am humbled and so very thankful. PLEASE keep praying for his complete recovery.

Notice the book Lisa gave Bandit to keep him busy. He LOVES to read! This book is about dogs, one of his favorite subjects.













































LONG time readers might recognize these photos. I wanted to remind you how much Bandit has always loved books...these two pictures were taken the day we adopted him. He crawled right up on Lisa's book and in to her arms so she could read to him and he has been doing it from that moment forward. Aren't they both adorable?!?

---

Friday, January 6, 2012 2:48 PM CST

These photos were taken last Thursday, December 29. We had NO idea he was ill then. (Rachel saw the splotches on his body on the next day. He was so cute, he had burrowed under a blanket I have hanging on the back of our recliner and had made a nest with the towel I keep on the seat (Our furniture is OLD so I try to keep it covered from the threadbare parts...Bandit loves it! Me, not so much). I think he looks so sweet! It is hard to believe what was about to happen the next day when I see these pictures.



These photos were taken Wednesday, January 4. Bandit had spent the day with us and it was almost time to take him to the doctor. He was so tired; however, we were encouraged by the fact we saw some positive behavior. Lisa wrote the sign for Bandit...being the experienced patient, she wanted to cheer him up and cheer him on! The little green blanket is Rachel's from when she was a baby. It is what brings her comfort and she wanted Bandit to feel better.



These were taken just prior to us leaving. David, Rachel and Lisa had all just prayed over him. The last photo is of Lisa and David kissing him good-bye. ONly Rachel accompanied us Wednesday. I have always allowed her to be the point person with the Vet...this has been hard on her because there is SO much instruction and medicines, so the Vet has been dealing primarily with me the last few visits.



It was shortly after we returned home Wednesday night that Bandit took a marked turn for the worse. I don't have pictures of that, I NEVER want to remember how he looked then...it broke my heart.

This last group of pictures were taken just after we got home yesterday and through the night last night (Thursday, January 5). We were SO thankful to have Bandit home after the prognosis we had been given earlier in the day.

These pictures are of the boys so HAPPY to have their dog home! Christian had gone with me to hold Bandit in the car since Rachel had class.



The girls arrived home and were THRILLED to see their precious dog one more time!


Lisa thought Bandit needed a few more expressions of love, besides the numerous blankets, toys and get well signs...she found one of her balloons and brought it to him to decorate his bed.



This is a photo of Rachel syringe feeding Bandit baby food. WOW, has the price of THAT gone up since we bought it. Lisa couldn't eat it and we hadn't bought a jar since Rachel was a baby..and I didn't buy many then. The last picture is of a message I wrote up on our board shortly after I posted my prayer plea to you all. The Thank you God was added last night by Lisa.



We don't know what the future holds for Bandit. We know that we were given a blessing to have a glimpse of our old dog, his personality and expressions were back last night and it was encouraging. I have been up with Bandit all night, he really is more work than a baby at present with his hourly feedings and meds. Pete was supposed to spell me at 4; however, I reset his clock and let him sleep until 6 since I was wide awake. I am running on adrenaline and thankfulness...what a blessing we received Thursday! THANK YOU for reading, for the kind messages and most importantly for the PRAYERS!

---

Friday, January 6, 2012 2:48 PM CST

Please check journal history for anything you missed. God is GOOD!

These photos were taken last Thursday, December 29. We had NO idea he was ill then. (Rachel saw the splotches on his body on the next day. He was so cute, he had burrowed under a blanket I have hanging on the back of our recliner and had made a nest with the towel I keep on the seat (Our furniture is OLD so I try to keep it covered from the threadbare parts...Bandit loves it! Me, not so much). I think he looks so sweet! It is hard to believe what was about to happen the next day when I see these pictures.



These photos were taken Wednesday, January 4. Bandit had spent the day with us and it was almost time to take him to the doctor. He was so tired; however, we were encouraged by the fact we saw some positive behavior. Lisa wrote the sign for Bandit...being the experienced patient, she wanted to cheer him up and cheer him on! The little green blanket is Rachel's from when she was a baby. It is what brings her comfort and she wanted Bandit to feel better.



These were taken just prior to us leaving. David, Rachel and Lisa had all just prayed over him. The last photo is of Lisa and David kissing him good-bye. ONly Rachel accompanied us Wednesday. I have always allowed her to be the point person with the Vet...this has been hard on her because there is SO much instruction and medicines, so the Vet has been dealing primarily with me the last few visits.



It was shortly after we returned home Wednesday night that Bandit took a marked turn for the worse. I don't have pictures of that, I NEVER want to remember how he looked then...it broke my heart.

This last group of pictures were taken just after we got home yesterday and through the night last night (Thursday, January 5). We were SO thankful to have Bandit home after the prognosis we had been given earlier in the day.

These pictures are of the boys so HAPPY to have their dog home! Christian had gone with me to hold Bandit in the car since Rachel had class.



The girls arrived home and were THRILLED to see their precious dog one more time!


Lisa thought Bandit needed a few more expressions of love, besides the numerous blankets, toys and get well signs...she found one of her balloons and brought it to him to decorate his bed.



This is a photo of Rachel syringe feeding Bandit baby food. WOW, has the price of THAT gone up since we bought it. Lisa couldn't eat it and we hadn't bought a jar since Rachel was a baby..and I didn't buy many then. The last picture is of a message I wrote up on our board shortly after I posted my prayer plea to you all. The Thank you God was added last night by Lisa.



We don't know what the future holds for Bandit. We know that we were given a blessing to have a glimpse of our old dog, his personality and expressions were back last night and it was encouraging. I have been up with Bandit all night, he really is more work than a baby at present with his hourly feedings and meds. Pete is supposed to spell me at 4; however, I am going up to reset his clock and let him sleep until 6 since I am wide awake. I will do the next two feedings and then try to get a couple hours of sleep. I am running on adrenaline and thankfulness...what a blessing we received today! THANK YOU for reading, for the kind messages and most importantly for the PRAYERS!

---

Thursday, January 5, 2012 10:55 PM EST

PLEASE CHECK JOURNAL HISTORY, Updates are fast and furious.

A miracle, no other words will describe it! Bandit just got up and tinkled (not far from his bed; however this AM he voided all over me. It grossed the kids out...I said it was no worse than they had done to me as babies). I am giddy and realize transfusions have a boosting effect; however, I claimed this miracle this afternoon shortly after I begged for prayer for Bandit. SO much to share...and we aren't out of the woods, we still need prayer. Our vet was positively giddy...this was after the death watch we were greeted with when we arrived and Bandit still had an hour left on his transfusion. She had hoped for his hematocrit to be 18 following the transfusion...it was 24!!!! We realize it will drop tomorrow; however, I KNOW he is going to survive, Thanks to your prayers and an amazing vet. I have more; however, I HAD to share right now! I have more to tell...soon! I even took a few pics of Bandit I hope to get up to show you, what a Blessed day it is! To all of our readers, lurkers, old friends and new...PLEASE REALIZE how your messages have perked me up and bolstered my spirits today. This has been the most horrible week...and today has been the most GLORIOUS DAY!...so much you will NOT BELIEVE, even when you read it! God is GOOD and FAITHFUL! I can't wait to give witness to this! He still needs hourly syringe feedings and water and he has coband from his blood draws on one leg and still has an IV access on another...but he is HOME and even making his personality faces that make him Bandit! PRAISE GOD!


Thursday, January 5, 2012 11:55 AM EST

The Vet just called, Bandit's prognosis isn't good. She said I should start preparing the children. I can't fathom that one week ago he seemed like a normal, healthy dog...PLEASE, PLEASE pray RIGHT NOW that the transfusion helps and the Atopica, Prednisone and Antibiotic turn things around.


Thursday, January 5, 2012 10:30 AM EST

Frustration doesn’t even begin to explain how I feel...I will not go in to the specifics but it does have to do with how I feel the system has let us down. I do not believe in coincidences, especially not 7 of them. Bandit is very weak and tired. He is at the vet and I suspect that while it is not a great scenario, he WILL need a dog to dog blood transfusion. I actually just spoke to our children’s hematologist to see if she could suggest anything else...but she does feel our Vet is very smart...so do I!

Thank you all for your kind words of hope and prayer. I am so sorry to read of everyone's pain or loss with a pet..that does seem to be something that resonates with many.

Laura, you asked about Lisa...I received a follow-up phone call yesterday to tell me that they had all of Lisa’s results and everything looked....”wait, , I just had it...hold on, I found them sitting on my desk after the holidays and she was sure the doctor had seen them...ok, let me look at them...yes, her kidneys...were okay, I think.” My next question was specifically about the 24 hour urine...what 24 hour urine?? I will have to get back to you on that. Fast forward to 30 minutes later...”I was just going over the doctors notes, he wants Lisa to wear an automatic BP cuff”. Yes, I know. She can’t wear it on a ballet day or a Friday. Monday it is already spoken for, so the first available date is January 11. Which is what we will do...It is now Thursday and they still don’t have the results of the 24 hour urine. I told her Tuesday to send me the hard copies of the lab results, I want to see them myself. Call me paranoid...I have a right to be.

Again, THANK YOU for the prayers and messages of good wishes. I promise to get this TR back to the subject at hand. I assure you, I find that MUCH more fun than what we have been experiencing.

---

Thursday, January 5, 2012 11:55 AM EST

PLEASE CHECK JOURNAL HISTORY, Updates are fast and furious.

The Vet just called, Bandit's prognosis isn't good. She said I should start preparing the children. I can't fathom that one week ago he seemed like a normal, healthy dog...PLEASE, PLEASE pray RIGHT NOW that the transfusion helps and the Atopica, Prednisone and Antibiotic turn things around.


Thursday, January 5, 2012 10:30 AM EST

Frustration doesn’t even begin to explain how I feel...I will not go in to the specifics but it does have to do with how I feel the system has let us down. I do not believe in coincidences, especially not 7 of them. Bandit is very weak and tired. He is at the vet and I suspect that while it is not a great scenario, he WILL need a dog to dog blood transfusion. I actually just spoke to our children’s hematologist to see if she could suggest anything else...but she does feel our Vet is very smart...so do I!

Thank you all for your kind words of hope and prayer. I am so sorry to read of everyone's pain or loss with a pet..that does seem to be something that resonates with many.

Several have asked about Lisa. I received a follow-up phone call yesterday to tell me that they had all of Lisa’s results and everything looked....”wait, , I just had it...hold on, I found them sitting on my desk after the holidays and she was sure the doctor had seen them...ok, let me look at them...yes, her kidneys...were okay, I think.” My next question was specifically about the 24 hour urine...what 24 hour urine?? I will have to get back to you on that. Fast forward to 30 minutes later...”I was just going over the doctors notes, he wants Lisa to wear an automatic BP cuff”. Yes, I know. She can’t wear it on a ballet day or a Friday. Monday it is already spoken for, so the first available date is January 11. Which is what we will do...It is now Thursday and they still don’t have the results of the 24 hour urine. I told her Tuesday to send me the hard copies of the lab results, I want to see them myself. Call me paranoid...I have a right to be.

Again, THANK YOU for the prayers and messages of good wishes. I promise to get this TR back to the subject at hand. I assure you, I find that MUCH more fun than what we have been experiencing.

---

Wednesday, January 4, 2012 7:57 PM EST

Our wonderful vet called this AM to check on Bandit...it is her day off, she was on call the weekend. She asked us to bring him in at 3PM, which we did. Bandit looked slightly better, although we may be grasping at straws. She did say he might just be adjusting to his new normal of no energy, it really is quite pitiful. She was planning on giving him a blood transfusion (she even brought her dog, just in case)! She decided to hold off one more day, although she wants him back all day tomorrow since she will be there...I think she is worried about me, I have been up practically non-stop since Sunday...and I look like it.... We only have one MD appt tomorrow, in addition to Bandit's, plus ballet and theater...this illness has been a nightmare, just like everything we seem to get. Dr. F wanted to change Bandits antibiotic. Unfortunately it was one she doesn’t stock, so we had to pay for it out of pocket; however, our pharmacist was able to fill the RX and even managed to give us a slight discount...I didn’t question her, I just said Thank you! We are broke as it is. I NEED to be working on this COBRA stuff; however, Bandit needs round the clock care....It is too much. There were TWO bright spots...Bandit got up and WALKED to the back door to go out and urinate...it was such a blessing to see! We had to carry him back in but that was encouraging. Unfortunately about half an hour ago, Rachel put him down on his feet and he just collapsed to the floor. The other thing we were happy about was his Packed red blood cells. Friday they were 45, even though his platelets were exceptionally low. Normal for a dog is 37 to 55. Yesterday they were TEN and NO platelets! We prayed for them to go up and today they were 12 and we were ecstatic..the doctor was NOT! She said if it had been 15, THEN she would have been happy...we were just happy for some improvement; however tonight I am incredibly worried again because in spite of the 6 medications he is on he looks extremely ill. I beg you once again to PLEASE PRAY!

Thank you for the wonderful words of encouragement and for letting me know you are here, thinking of us and praying for Bandit. All of the messages of support mean a LOT! I need to help with Bandits medicine and feeding.



Wednesday, January 4, 2012 6:37 PM EST


I went to give Bandit his food and water at 2 AM and couldn’t find him. My heart was heavy and worried, because there was black, sticky stool all the way down the hallway and I could not find Bandit anywhere. After a short search I woke Pete up and we found him under the bed in the guest room. I feared the worst; however, Pete managed to get him out. While Pete cleaned up the mess ( I started cleaning while Pete was trying to get Bandit out) I got 10 ccs of water in him. As I was working on 10 ccs of food, Rachel wandered in and took him. Between the two of us working together, we managed to get him to eat 15 ccs of baby food and drink 30 ccs of water. I sent Rachel back to bed after we put Bandit in our bathroom in his bed. That lasted all of half a minute, he wandered out slowly and wanted to sleep with us. Pete helped me get him downstairs and I sat with him snuggled up in my lap the rest of the night. He is now in a nest of blankets resting and waiting on his next meal as I type.

I am tired and weary and have a right to be. Sometimes you are just sad. Some people don’t understand that or my frustration...although they like to say they know how I feel. Actually, you couldn’t possibly, unless you had experienced the past two months like I have. I realize people just want to help or don’t know what else to say...but I am at the end of my rope and truly shouldn’t have to try and make “you” feel better about our situation, no matter who you are...NO ONE (other than God) knows everything that has been going on around here. Please cut me a little slack...I am grieving.


Tuesday, January 3, 2012 11:37 PM EST


Please check journal history if you have missed any of what is going on...This will be short...I am physically, emotionally, and mentally drained...just drained...Bandit is spontaneously bleeding internally from the low platelets. EVERYTHING they can do is being done to determine WHY the platelets are low. There is much to tell, I just can't tonight. They wanted to do a blood transfusion today; however, that causes its own set of problems, especially with his size and fragile health. PLEASE, PLEASE ask everyone to pray for Bandit, I KNOW a miracle can happen, even for our beloved pets. He is home with us tonight, the vets office does not staff at night. If anything happens we will be making the mad dash to the emergency vets...He really IS better off at home with us tonight...we have been feeding him by syringe 10 ccs of baby food and 10 ccs of water each and every hour...he insisted on sleeping with the girls tonight, so his bed is at the foot of their bed. Let me say it again, please lift our little guy up in prayer.
__________________

I want to say LONG OVER DUE Thank you's to Dolly, Lisa Z and family, Ken and Cheryl, Donna and K9 Capers, Sandy and Jack, Ginger and Carol...we so appreciate everything and I pray I haven't missed anyone...Nothing, no matter how big or what you think is "small" is forgotten and it all is used to glorify God. THANK YOU!

---

Tuesday, January 3, 2012 11:37 PM CST

Please check journal history if you have missed any of what is going on...This will be short...I am physically, emotionally, and mentally drained...just drained...Bandit is spontaneously bleeding internally from the low platelets. EVERYTHING they can do is being done to determine WHY the platelets are low. There is much to tell, I just can't tonight. They wanted to do a blood transfusion today; however, that causes its own set of problems, especially with his size and fragile health. PLEASE, PLEASE ask everyone to pray for Bandit, I KNOW a miracle can happen, even for our beloved pets. He is home with us tonight, the vets office does not staff at night. If anything happens we will be making the mad dash to the emergency vets...He really IS better off at home with us tonight...we have been feeding him by syringe 10 ccs of baby food and 10 ccs of water each and every hour...he insisted on sleeping with the girls tonight, so his bed is at the foot of their bed. Let me say it again, please lift our little guy up in prayer.
__________________

I need to say Thank you to Dolly, Lisa Z and family, Ken and Cheryl, Donna and K9 Capers, Sandy and Jack, Ginger and Carol...we so appreciate everything and I pray I haven't missed anyone...Nothing, no matter how big or what you think is "small" is forgotten and it all is used to glorify God. THANK YOU!

---

Tuesday, January 3, 2012 5:05 AM EST

Rachel woke me up about 25 minutes ago (she has been asleep every hour when I have gone in to give Bandit water). Together we managed to get 2 syringes (20ccs) into Bandit...there was only a slight dribble towards the end when she was giving him some (I did the first syringe, she did the second). His nose was semi-moist and cool this go round...he had been letting Rachel hold him like a baby on his back (he typically only likes that for a brief time). It was so good at the end of the last syringe to see him want to turn over! Please keep praying! Pete will be getting up at 6, so he and Rachel can get Bandit to the vet at 7. I have a LONG list of questions, including if he could/should stay there over night. I honestly don't know if they have that capability or if they would transfer him to the emergency vet (in Huntersville) for overnight care. Hara, I KNOW Bandit understands, so I BELIEVE YOU! It has been a long worrisome night and we have a long, busy day ahead...I really need to hear good news about Bandit. Please continue to Pray!

Monday, January 2, 2012 11:57 PM EST


I want to Thank you all for the continued prayers. Bandit is so ill. He spent from 11 AM on at the Vet, with multiple phone calls to check on his condition. We were so worried and didn't know what else to do for him. Rachel and I picked him up at 5 PM and will take him back at 7 AM. We are trying to keep him hydrated (10 cc every hour). Rachel managed to get him to eat 1/2 a small jar of baby food. He had a small seizure tonight, but seemed to recover quickly. He is mostly just lying around, NO energy and so pitiful. I keep praying and asking God to heal him. I have no idea what is wrong, why he has low platelets, there are no answers. We need another miracle, please keep praying. Our hearts are broken and it is very hard to keep it together when Rachel cries. She has done everything she can for him, she is a great caretaker. It is a very hard situation, how can you fix what you can't diagnose.
I forgot to add they put Bandit on a fifth medicine today...we can barely get any food or water in him, the pills are a nightmare... THANK YOU AGAIN for understanding how much we love him and for praying.

We didn't go to the Ronald McDonald house tonight, there was no way I could leave Bandit alone. It turned out to be a good thing too. I had to drive across town to woodworking though. Pete took David tonight and was sitting in the car reading his bible. He got out to check on David and automatically locked the door with his keys inside..thank goodness the ignition wasn't on. Christian stayed home with the girls and Bandit, I am so relieved he hasn't gone back to college yet.

We need a miracle, it really is too much...

Sunday, January 1, 2012 10:50 AM EST

PLEASE keep Bandit in prayer. He had a seizure around 10 AM this morning and while he is fine now, just a bit sluggish, the Vet wants us to keep a good eye on him to ensure he is okay. Pete is taking Christian, David and Lisa to my Mom's for dinner and Rachel and I are staying home to care for Bandit...but we need all the prayers you can muster for our little dog. Thank you!


Sunday, January 31, 2012 6:10 AM EST

I am praying for 2012 to be a much better year for our family! Several people have said to me over the past week it can't get much worse...Unfortunately, it can ALWAYS be worse, we just ask God to protect us in all situations.

2011 began with Rachel quite ill and just out of the hospital. She was desperately sick for months and still has flareups now. Lisa had odd symptoms and intermittent chest pain throughout the year. We had multiple and necessary appliances in our home break, including needing TWO brand new HVAC units (one on each floor, to the tune of $12,000), Pete's Dad died unexpectedly...that is still very hard for us. We had NUMEROUS family and friends bless us in so many unbelievable and kind ways, we will never be able to repay you all or say THANK YOU enough! We had the most AMAZING Make a Wish trip anyone could ever hope to have! They began giving David his IV iron on a schedule, which has made his life so much happier and is bringing back the old David we have all missed and loved! We had to go back to Philadelphia for a two week trip as Lisa had yet another cardiac cath and they scared Pete and I with their dire predictions of imminent surgery. Pete lost his job and is truly upset...this is the second time in three years and the prospects are much worse than they were three years ago. He is now up against people who have as much experience as he does and those who lie about their experience and education, just to get the job...frustrating...We had a joyous Christmas with our family, (immediate and extended) in spite of it all, and Christian is home, which always brings us joy. And we ended the year with worry and concern over Bandit. Our hearts are broken and we SO APPRECIATE those of you who have taken the time to log in to the guestbook and offer your prayers of support for him and us! He is as much part of our family as any of us! There is so much more to our year than this, as many of you know! These are just a few of the highlights and lowlights that have impacted us deeply.

To our Family and Friends: THANK YOU for your continued support and love! We couldn't do it without you! Praying your NEW YEAR is off to a wonderful start and that God will bring you joy, peace and protection!

As for Bandit:The vet called to check on him last night around 6:30 PM and she told me she wanted to be very up front, she was very worried about him and reminded me she was as close as the phone...she is better than some of the human doctors we have! While it was comforting to have her call, it was a harsh reminder to just how sick he truly is. I am very worried and we are so thankful for the prayers and kind words of support you have given to us!!


Friday, December 30, 2011 10:10 PM EST

I ask you to PLEASE keep our sweet Bandit in prayer. He is our adorable chihuahua (Most of you already know He is also a therapy dog and visits schools, Nursing homes, MD offices and the RMH to cheer people up. We are “on duty” Monday night at the Ronald McDonald House where we volunteer; however, Bandit will not join us now. We will play Bingo with the guests instead). Rachel is Bandit’s Mommy and trainer. She noticed around lunch time today he had some odd “spots” on his body. She first noticed one in his ear and then they were on his torso and legs. They appeared to me as bruises like I have seen on Lisa (she takes coumadin). As soon as Rachel showed them to me we called for an appointment. The Vet saw us for a long time this afternoon and to quote her discharge papers: “Bandit’s platelet count is very, very low and that is why he has the red blotches on his skin. The cause could either be an infection, or possibly an auto-immune disorder”. She told us she wasn’t going to sugar coat it, she is VERY worried. Rachel is beside herself with worry and fear, which exacerbates her own health needs. PLEASE pray with us that Bandit will respond to the four medications she has asked us to start him on. Also, please say a prayer of Thanksgiving for our Vet who has never once taken a penny for Bandits Vet care, medications, or labs in the 3.5 years we have owned him. Bandit seems to feel okay, just a bit tired. We have to keep him safe from bleeding injury. I told Rachel he couldn't be in better hands, we are pros at that because of Lisa.

As for Lisa...the lab can't find her test results and we are quite unhappy. They "think" they will turn up when the lab gets "back to normal after the holidays"...so we are still waiting for news...and NO, we aren't happy. However, we have no recourse.

I was in the middle of my next update when all of this happened today, so hopefully I will have the next Disney installment posted soon.

We had a joyous Christmas and were so thankful Pete's Mom was able to join us for several days (we got an extra day with her because of stormy weather :o) I will post a few pics as soon as Pete has time to download them, I just needed to ask for you to PLEASE pray for Bandit!

---

Wednesday, December 21, 2011 5:21 AM EST

This has not been a great week... and yet it has. Tuesday we got notice that the $1,496 they quoted us for COBRA was horribly inaccurate, it will actually be $1,900...per MONTH! Who has that kind of money? I know GOD is the only way to get us through and He is showing us what He can do...but it still isn’t enough as of yet.

I want to Thank some special people for making us smile and for spreading joy to us at an especially trying time. First, my friend Karen and her husband (along with her wonderful co-workers) decided in lieu of gifts this year they would do gift cards and then they donated them to us! I opened the mail Sunday morning (I am always behind on all correspondence, as you know). Inside were very generous gift cards to Wal-mart and Michael's! (Karen is an avid crafter and she does so much for so many with her beautiful creations)!

My new friend, LaQwiesha and her family chose us to help and did they ever! They teach their children what it means to give back. She is having her own difficult time; however, the Lord is providing her what she needs and she is paying it forward. We met and she just kept pulling goodies out of her car...Delicious Soup, Salad and Bread for our dinner on Monday night (and Monday was LOOONG!), a fruit basket with little candies, $25 gift cards to help with the pharmacy bills, gas and food...there were even $10 gift cards for chick-fil-a for a treat when we are out at multiple MD appts. and need something on the go! As if that weren’t enough, she even had a spiral slice ham and a gift for us for under the tree (SHHH~it is a game and you KNOW how we love games)! Lisa and Rachel especially really want to know what it is!

Yesterday was another exceptionally long day, Lisa and I had MD appts and her ultrasound in the AM, we spent the afternoon at the hospital with Rachel playing her guitar and Lisa actually got up and sang two songs! It felt good to know that the children at the hospital were being blessed by mine. Christian came along as well and he was a big help to everyone, doing whatever needed to be done. We left there and had the last MD appointment of the day and got home around 6:55. After dinner, TWO different friends came by to give us money towards the COBRA bill (and they didn’t know that we had been shocked by the price that morning). Sandy and Jack, THANK YOU for being the Stewards of your Sunday School class and bringing us the very generous check! Shortly after they left my friend Lori and her husband Mike stopped by and gave us cash as well, what a huge surprise. THANK YOU! Then I opened the mail and found a card with cash from SANTA’s ELVES!! (It arrived safely and we loved the four different notes...I am thinking you are ladies and I am trying HARD to figure out who you are)!!!

SO with all of the money that came in (we had another person give who doesn't want to be named who donated a 1/4 of what we needed), we are now half way to what we need to pay this astronomical bill for December! And we get to do it all again come January! I truly AM open to any and all suggestions, I ask you to please research it for me and let me know if you find an answer to our dilemma!

People have asked me if they can write letters to Talk Shows...YES! To the Newspapers...YES! To Congress...YES! To the President...YES! To Facebook...YES! (FYI~ I don't Facebook). I have been asked if they can tell their friends, church, civic groups ...the answer to all of the above is...YES!!!! Tell WHOMEVER you want to tell, God’s Blessings do NOT want to be blocked by our pride. Do not underestimate what you can do...or the power of One Dollar! Each and EVERY thing you do will help us and glorify God!!! AND, like us, if all you can do is pray...then by all means...PRAY!!!!! It ALL helps and God is pleased and WILL bring us what we need...whatever that might be!

I have been commanded to share with you what HE is doing! THANK YOU for reading of HIS blessings!

I have FAITH and I DO BELIEVE in MIRACLES!!!!!



Now FAITH is confidence in what we hope for and assurance about what we do not see. ~Hebrews 11:1

News of this reached the church in Jerusalem, and they sent Barnabas to Antioch. When he arrived and saw what the GRACE OF God had done, he was glad and encouraged them all to remain true to the Lord with all their hearts. He was a good man, full of the Holy Spirit and FAITH, and a great number of people were brought to the Lord. ~ Acts 11:22-24

---

Saturday, December 17, 2011 9:07 AM EST

They have finally decided Lisa’s High Blood pressure is a “huge concern”...Really, CHRISTMAS is when you decide it needs to be addressed? I guess it wasn’t enough that she has to wear a cardiac monitor, now you want to worry me that her kidneys might not be well?? I don’t know, maybe last JANUARY when I first came to you with my concerns you might have looked at things...or any of the eleven months in between...Trying not to worry, it is in the Lord's hands, I know. This was triggered by our Wednesday hematology visit when Lisa’s BP was through the roof and it never came down, even with rest. I picked up the lab orders and supplies for Lisa to have a 24 hour urine test starting tomorrow. I always love getting news like this for Christmas (insert sarcasm) and the specialists are always on vacation. The good news is, they told us it would take at least three weeks to work her in and they called yesterday with an appointment scheduled for Lisa for December 28...I hope they have the test results back by then so they can evaluate completely at that visit! Lisa is scheduled for tons of lab work Monday, they moved her kidney ultrasound to Tuesday (from Monday) because they couldn't get insurance approval yet (ARRGHH!)

I need to lighten the mood a bit, so let me wrap up the end of day one for the wonderful trip we were blessed to take in October:

After the Christmas Party, we returned to our villa, basking in the glow of what can only be described as a truly amazing day! The girls took turns in the whirlpool tub, where Lisa proclaimed it was the ONLY way to take a bath! We ordered Pizza from the amazing GKTW pizzeria and it was delivered quickly, along with soft drinks of our choice and bottled water. Lisa began the task of finding out what her surprise was! It had arrived while she was sleeping earlier in the day and it was the first opportunity she had to check it out. It was from my friend Tim and his family and it is the CUTEST Mickey Butt Bag (that is what we call it...it looks like MIckey’s pants!) Inside were LOADS of goodies and snacks for us! Lisa was so excited as she explored the delicious treats that were in BOTH sections of the insulated bag! She thought the apples wrapped in foil were so funny and had to unwrap each of them to see if they were red or yellow...she cracked us up.

I posted a brief update on our CB Site to share some of the magic with those who helped make our trip even more special and laid out and prepared things for the next day. Then I went to bed.

It only took me seven updates and nearly two months; however, I am FINALLY at the end of Day 1. Only nine more to go...

I also want to share some happy news about David. His Engineering Explorers posts were assigned a project to build a load bearing bridge out of Balsa wood and wood glue only. They were to make it as light as possible. While David’s didn’t hold the most weight he DID have the lightest bridge at 0.018 pounds and it supported ELEVEN pounds before it broke. The Engineers chose his bridge as the winner for the Engineering Judgment award...his was the best usable design!!!! To me, that was better than the bridge that was three times the size of his that held the most weight...it shows he understands the principals they were trying to teach and he understood the math...Yes, I AM proud!!! He has come a LONG way from the boy who took three years to learn his numbers, colors and shapes!

I neglected to take pictures before the bridge was broken at the competition; however, here are a few of David posing with his broken bridge and trophy.

---

Tuesday, December 13, 2011 4:25 AM EST

If you missed Saturday or Monday’s update, please click on Journal history to read all about it!

Okay, so you all enjoyed my last fun update, how about MORE!

First, Dear Lisa Z and family...THANK YOU for our amazing Before Christmas package and the goodies! Looking forward to fun family time and WHERE did you find that adorable movie???? EVERYTHING helps, GOD BLESS YOU!

NOW, how about more Disney fun?!? You might remember we had just gotten into our Villa and it was all decorated for Christmas:

After we brought in all of the luggage and got settled, I tried to get the girls down for a nap. All the guys fell asleep first, including Pete. The girls finally settled down and fell asleep and I continued to unpack and wash the clothes we had worn on the plane. There was a knock on the door and a special delivery for Miss Lisa arrived from our dear friend, Tim and his family. I was so surprised and excited! We had shipped a few things down to the Villa (bottled water and batteries from Amazon, along with our toiletries and Lisa’s wheelchair sign (you probably saw the pics with the packages in the last installment up on the bar).

I woke the guys up first and they dressed in their Christmas shirts. Next it was Rachel’s turn to get all Christmasy. Then we had the hardest time getting Lisa up. She was exhausted and didn’t want to go to dinner. We dressed her in HER gorgeous outfit and skirt and she was resting in her W/C all of the way to dinner. I was quite concerned she would NOT have the energy to enjoy the nightly festivities. Everyone must have had the same idea to arrive early to eat, so they could get over to see Santa, because there was a HUGE crowd waiting to go in and eat. Of course, we didn’t quite know what to do and it seems neither did the volunteers. They were a group of young teens on Spring Break. A gentleman insisted on pushing Lisa as I balanced mine and Lisa’s food tray. Lisa was not in the mood to eat and she certainly didn’t want Christmas dinner. THANKFULLY after we sat down I discovered a kids station with chicken nuggets, pasta and other kid appealing foods. Typically Lisa likes “regular food” however, tonight she didn’t want anything from either food bar.

She perked up when I said lets go see Santa though. We left Christian and David finishing up their meals and headed over to the theater. Santa came walking past and talked to Lisa and Rachel and we went on inside...where I discovered Pete had forgotten the video camera (I had the point and shoot). The boys had joined us by that time, so Pete sprinted over to the villa. I was worried he wouldn’t be back in time, so we let a family go in front of us. As it happened, Pete got back before the other family went up to see Santa; however, as we waited for our turn, I noticed a family towards the back of the line who had a child who obviously had impulse issues and I asked if anyone minded if we let them go before us. I am happy to say the other two families behind us agreed so we had just a bit longer wait; however, it was worth it to see the smile on the Mom’s face. I knew she was debating leaving the line or risking a meltdown right there. Finally it was our turn to see the Big Guy himself and we got photos of us all. Unfortunately, I can’t find my GKTW CD, I sure hope it turns up, I haven’t seen them yet with all that has been happening around here. When I find them, I will post pics of Pete and I as well. After we left Julie’s Theater we rounded the corner from Mayor Clayton’s house to see two carts full of presents. Christian was too old to participate (he was too old for any of the extras, according to them); however, the three younger children were allowed to pick out a present. David chose transformers, Rachel chose a game and Lisa chose (surprise, surprise) a baby doll. It was still early, light outside and hot! Pete ran the presents back to the villa while the children and I got a snow cone. We saw Kailey the Penguin (My children LOVE Penguins) and Mayor Clayton. Kailey the Penguin fell in love with Lisa and kept running off with her. The next thing I knew, he had pushed her over to the carousel and wanted to ride with her. She was thrilled, as you can see from the pictures. Pete had joined back up with us by this time and we had a great ride. We finished up and went over to ride the horse drawn carriage; however, it was already packed. We sat for while longer rocking, then went out to enjoy more of the village activities Some of us had to get rid of their snow cones to ride the carousel, so everyone got another and went back to rock on the porch and wait for the carriage ride. On their return, we loaded up and we were off! Everyone was sitting quietly, looking sort of bored...I don’t do bored and began a sing along with the children, we even got some of the parents to join in. The carriage driver said it was his best ride of the night...we all had a great time! I posted this that night on our CB site:

“I am not going to update a lot...but I had to tell you Christmas was AMAZING!!! We had a blast! I saw newdrama and KNEW it was him! ... Just a teaser...I led a sing along on the carriage ride and our co-riders said they had the best time (One Mom actually said I kept it from being boring...who me??)...spreading joy makes me happy...Tomorrow will be full of even more joy...LOVE IT HERE! We are getting ready to have pizza, Lisa just had her "jacuzzi bath the only way to get clean." Per Lisa, it is the best time EVER! She wasn't feeling well earlier, but perked up considerably! She was inviting everyone we met (and we met a LOT of people, they LOVED our outfits Andrea and Chiara!!!!!), telling them Rachel was opening the show at HOB. So much to share but you have to wait, time to play!”

After the carriage ride we wandered over to the ice cream parlor and everyone but me got some goodies. We sat outside, just enjoying being at GKTW and taking pictures and people watching. The next thing we know, we see the parade coming up from the Gingerbread House...it drove and marched right past us. Of course, we had to move closer so the girls and Christian could dance. They had a blast, as you will see below. It really wasn't David’s cup of tea, so I sat with him on the wall, watching most of the festivities and taking pictures. The next thing I know, Mayor Clayton (The mayor of Give Kids the World) had sat own beside David, who was less than thrilled to be the center of attention, but endured it. We were eager for the snow to begin; however, no one seemed to know if or when that would happen. Christian went in to the House of Hearts to ask if there would be snow...they told him it would depend on the volunteers and if they wanted to do that or not. Just when we were convinced the party was over and lots of people had already wandered off...the snow machine started and the children had a great time...until Lisa got “snow soap” in her eyes. She was in tears it was stinging so badly, so I ran her to the bathroom and rinsed her eyes out. FINALLY she felt better; although her eyes were red and a bit sore. My advice is to BE CAREFUL with the snow from a blower if you ever get the chance as you enjoy it. They had a blast in spite of it all. After that the boys and Lisa got one more snow cone and we headed back to our villa...

I am so thankful for the memory of Christmas at the village. The past 8 years have not been easy and most of our holidays have been clouded with illness. In view of what has happened THIS year once again...I am even more thankful we had our Christmas at the Village. It is sustaining me as everyone runs around enjoying there holiday hubbub...there isn’t any wild Christmas preparations at our house, just a thankfulness for each other and a thankfulness Jesus was born, to give us hope for better days. We are focusing on Jesus’ birthday and so thankful we are blessed to have each other...and all of these incredible memories. For those who care for our family, I hope you enjoy these photos...there is a lot to view...and I have SO MANY MORE I spared you from seeing....believe it or not!

---

Monday, December 12, 2011 4:08 AM EST

My friend, Betty called on Saturday and told Pete she was going to the grocery store and wanted to bring “a few things” over. As Rachel and I were hunting for our coats to leave for the Ronald McDonald House and our first shift with Bandit, she showed up...with BAGS FULL of groceries containing fresh meat (turkey, pork chops, ground beef and much more), frozen pizza, lasagna and talapia (my FAVORITE fish), 10 bags of veggies, apples, orange cuties (I had one lone banana left in the house and it was quite old), orange juice, cereal, bacon, sausage, eggs...even ice cream and hershey syrup! It was simply amazing and Pete and I both knew God had sent her to bless us. LIsa was quite boisterous and enthusiastic in her thanks, even calling out as Betty left for her to come back and visit and bring more food; Yes, a bit embarrassing for us...but showed the true extent of how much we appreciated everything! (I had actually planned to call Betty and ask her if she could help me once again with some sewing, Bandit's Therapy Dog bandanna has always been too big and we found a way to cut it down to fit on his collar, and I didn’t have a machine to make it not look amateurish). Dear Betty, who had so kindly brought us all of this delicious, expensive food took the bandanna with her to fix (I am sure she was thinking...REALLY!...but she didn't say or show it). I honestly can’t tell you how thankful we were for her, once again.

I must say we feasted on Sunday! Cereal and fruit for breakfast; lunch and dinner was simply the best home-cooked meal I have had in a long time. I put the roast in the crock pot at midnight to cook slowly all night long and we woke to the wonderful smell of it wafting up the stairs. David peeled the potatoes Betty brought for me and Pete diced them. I cooked frozen broccoli, added some raw carrots to the meal I had and we feasted! We kept joking about the roast beast (think “the Grinch story”...I think we were on a meat high, lol). We enjoyed it for lunch AND dinner and will have it again on Tuesday night for dinner...it was simply DELICIOUS!!! It was an expensive cut of meat and it was so moist and tender...what a treat! I felt badly Christian missed out (he has exams until Friday evening) but I know he gets a good meal each day at school, so it was okay.

Rachel and I had our first shift working at the RMH on Saturday night and while we only had two children and a few adults...I knew we made a difference for one child whose infant cousin was in the hospital, hoping for a heart transplant. She stayed with us for about 90 minutes and we played with Bandit, read stories and talked. I had the pleasure of talking with her parents briefly and that entire family could use prayer...please keep baby Will and his family in prayer.

Pete and I are continuing to send out LOTS of resumes. If you can believe it, I am even further behind on emails than I have ever been. The best way to reach me IS by phone. I have some things I want to re-list on Craigs list; however, finding the time is proving to be an issue. Someone ALWAYS has the computer tied up working on school work, resumes, job applications.

Many keep asking if we qualify for Medicaid. I am certain that NOW we would. The problem is IF we let our insurance lapse, everything that is pre-existing will NOT be covered once Pete returns to work. Please believe me when I say, I HAVE checked out every option I know of. I welcome anything that you know to be fact and credible to help us...PLEASE check it out first though, many things that seem they ”should” be this way simply aren’t. Just because it makes sense to those of us who need it, doesn’t make it true. You all may remember I read ALL of the insurance manifesto when it was passed last year and I predicted exactly what I am running in to now...it is NOT any better than it was when Pete was laid off in 2008, just worded differently with LOTS of loopholes. That being said I TRULY would love a way around this $1,500 a month albatross hanging around our necks...so if you know of something, please do the legwork for me and provide that info to me. If you have a website, actually check it out, do the reading, try a mock application and see how far you get. It is so frustrating to be told I can get help, spend all of that time trying and once again having a roadblock thrown up. I TRULY don’t have time for that, yet I sacrifice sleep to pursue one more place for help because this MIGHT be the one and I HAVE to try, Give it a shot for me and let me know when it works...You will hear me shouting to the heavens for joy, I promise! And I will give you the credit for having found it! Also, remember with Medicaid, we would NOT be allowed to go to Philadelphia when Lisa needs her next open heart surgery, it simply would not be possible under their rules.

That’s it for now. PLEASE keep the prayers coming. I KNOW God has BIG things in store for us...I am so eager to have them continue.

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. ~2 Corinthians 12:9


Saturday, December 10, 2011 11:08 AM EST


Back to reality...which is I have searched EVERY alternative to COBRA and keep running into this:

When should you continue your group health plan benefits under COBRA?

You should seriously consider continuing your health benefits under COBRA if you...

have had comprehensive benefits and don't mind paying more for them. (Ha, no choice)
want continual, guaranteed coverage at a higher cost.(again, no choice)
have had recent health problems. (YES)
have had ongoing health problems. (YES)
are taking expensive medications. (YES)
have been declined for private insurance recently. (NO)
have a history of medical problems. (YES)
have had an accident within the 60 day window of enrollment. (NO)
are pregnant or planning to get that way. (Praise God~NO)
got a job and your new employer does not offer a health plan. (NO)


So if you know for a fact how to get around this, I am all ears and open arms! Things can not "be right" or not "sound right"...but they are, sadly.

PLEASE REMEMBER we have NO CHOICE other than to keep the insurance, otherwise the children will NOT be able to have insurance when Pete DOES find a job (Unless he is fortunate enough to land a government job).

In other news, Lisa has a cardiac monitor for Christmas, Rachel is on a new medication, David's ferritin levels are SO much better since they have his IV iron on a regular schedule (It only took 3 years) and Christian has his final exam for this semester on Friday, then he will be home for Christmas. Pete and I are spending every waking moment trying to hunt for jobs, send out resumes, and keep things as normal as possible around here without losing our minds. Every single penny we can scrape together is going in to the insurance fund to pay the $1,496 per month COBRA bill that will be coming due shortly and we will need to do it all again on January 1...Thankfully, for the moment we have a roof over our heads and for that we are grateful. So many aren't as fortunate.

Rachel and I have our first "real shift" at the Ronald McDonald House with Bandit tonight...that will take our minds off of our own troubles for a bit and we will be able to give a bit back to some folks who truly deserve some holiday cheer.

---

Monday, December 5, 2011 9:11 AM EST

Pete left over an hour ago to put out some resumes and go by the Veterans Center to see if there is ANYTHING they can do to help us. Please say a good thought for him. If you know anyone who is looking for gently used toys for Christmas, I have a lot for sale! Plus a few new ones and LOTS of Girl costumes, sized 3T and up, some from the Disney Store (NONE from our recent trip, they still fit my Princess...and we hope to go back to Disney soon...Hey, I can dream, can't I??.

As you know, I am trying to give you a trip report of our magical time on LIsa's Make a Wish trip. I think it is time to bring some magic back to our website, I hope you enjoy. You might remember when we left off, we had just finished a delicious lunch at Katie's Kitchen, complete with all of the Ice cream we could eat:

We finished lunch and went back to the Welcome Center to see if our Villa was ready. It wasn’t quite finished they told us, so we played around for a bit and then they told us they would take us over. The gils, myself and Christian got in the golf cart with our volunteer and Pete and David followed us to our new home. We didn't have far to go! I had truly wanted to stay in the new villas, or so I thought. However, as with everything on this trip, I decided to see what God had in store for us. This was NOT a new villa, in fact it was one of the older ones...however, it was so close and convenient to ALL of the activities AND we had a gorgeous view of the pond...it was simply perfect for us! The volunteer made a big production of making us wait to go inside and when we came in we saw why! Because we hadn’t had far to go, I hadn’t noticed that the other villas didn’t have any outside Christmas decorations...but ours did! If you followed our PTR you already know this, but now you get to see it with PICTURES! This was my post on our PTR for those who missed it:

We arrive at our villa when it is ready and they have transformed it for us...IT IS CHRISTMAS at our house! Wreath on the door, bows on the rocking chairs and tree in our living room with Mickey Santa and Tigger Santa, Nutcrackers and a snow globe! PURE MAGIC...Yes, I cried! We didn't realize ours was the only one decorated outside until AFTER we came inside. They had told us they celebrated all day long, even with the music they played, so we thought it was normal...but no, EXTRA PIXIE DUST just for us! I had to share so you all knew we are living in the moment! And what a GLORIOUS moment it is!!!! (For those who don't know, Pixie Dust is GOOD things happening).

It was SO exciting and really touched my heart that they had gone out of their way to make Christmas happen in our villa! They had sent their entertainment crew over to “TRULY Make it Christmas!” They play Christmas music all day EVERY Thursday at the Give Kids the World Village and we had Christmas the entire time we were there! Of course I got teary eyed. I am getting teary eyed typing this, it was the Christmas we had missed for the past three years and obviously our Christmas for this year as well...and it was such a blessing! Even reliving it now brings joy to my heart and a smile to my face.

I took pictures with our volunteer, she took one of us and then bid us farewell. Before I would let then bring our luggage in, I ran around taking pictures of our “home away from Home”...pictures do NOT do it justice...it truly was roomy and spacious and they had thought of everything! (except for enough flatware...but you can get plastic ones at Katie's Kitchen and absolutely NO KNIVES, other than butter knives, in the kitchen). As you see from the photos, it was simply amazing...I even took pictures of the laundry area, pantry closet and bathrooms. For those who have never seen the villas, the children get the Master Bathroom, with the handicap shower and whirlpool tub...after all, they ARE the stars at GKTW!

On our table were a few granola bars, a little bear and some crackers. “Our” nutcracker was holding a stuffed Mr. Potato head for Lisa. There was also a box of blank Birthday cards.

You can also see the sodas in our fridge.

Living Area, the boys took turns on the sofa and the roll-a-way bed.









Master Bedroom, the girls slept here.


















Master Bathroom






Hall Bathroom












Parents Bedroom

---

Thursday, December 1, 2011 12:50 AM CST

Thank you everyone for the support and kinds words and the PRAYERS. I am overwhelmed by the sheer number of people who ARE praying and that lifts me up and will help sustain us through this rough time. I will check out each job that has been sent to us (yesterday was filled with organizing, updating Pete's resume and sending out approximately 100 by days end...which is in addition to the multiple MD appointments and the children's activities). It was also a day filled with news of how much Pete's COBRA insurance will be. There isn't any other option for us other than to figure out a way to pay for it. There aren't any government subsidies for COBRA, as ran from mid February 2009 to May 2010 to help give relief on the astronomical cost of the approximate $1,496 per month we were quoted. We have four children and three of them have major medical needs. Add in Pete’s medical needs...there is NO WAY we can do with out it. If our insurance lapses, they will never be eligible for health insurance due to pre-existing conditions. We don't have a choice. I do plan to list as much as I can on Craig's list. I would LOVE to have a yard sale. Does anyone know of a place locally I could set one up inside several days in advance, that would be HELPFUL! I simply wanted you to know that you HAVE touched our hearts by telling me you are praying and that IS what I needed! God Bless each and everyone of you, because I know there are many praying who DIDN'T say so as well! I also had an email about someone to look at the separation agreement and will contact them today. It does appear it is a standard form, we just want to be sure.  I can't imagine why they would want to cause him harm...it is just too many cases of hearing never sign ANYTHING until you understand it. Pete is simply being laid off for the economy. They were down to three workers (the other two have been there 10 and 13 years)...plus the boss and HE will not be going anywhere, until they close their doors. I DO feel God has a better plan and job for Pete, we are simply going to have to endure this as we wait. I have had so many seasons of pruning and growing and honestly, we always go through the fire, get take down to the wire and as one of my friends says we always rise like a Phoenix up through the ashes. I know I have to stay focused and just BELIEVE and God will handle it all. THAT is why I came to you all and asked for prayer. THANK YOU for supporting us in that way! I have seen MANY MIRACLES; God IS amazing and often He has used us to show others what He is capable of. This need is much to big to be “fixed” by me, so I KNOW God will take care of it...He promised!

And without faith it is impossible to please God, because anyone who comes to Him must believe that He exists and that He rewards those who earnestly seek him.~Hebrews 11:6

---

Tuesday, November 29, 2011 3:45 PM EST

This will be reminiscent of a post I made in November 2008. Pete was laid off today around lunch time and is in need of a good job. We are in desperate need of prayer.

In the past five weeks, we have returned from the most amazing Make a Wish trip, Lisa was hospitalized in Philadelphia for two weeks with a cardiac cath, She was hospitalized here in town last week following a virus and far more things that I will not bore you with.

We NEED all of the help we can get and PRAYER tops our list of needs. I KNOW there are many in the same place, I don't need a reminder of that. The stress of this past year has been HUGE. We know God will provide, He wants to hear you all ask on our behalf please.

The good news, God’s timing is perfect in all of this and He will guide and protect us, I do believe that! New doors will be opened, we are positive on that front. We have no choice BUT to adjust and move forward. Your prayers in this matter are definitely needed and if anyone has ANY ideas, we are certainly open to all suggestions! Yes, we would relocate if the offer was right!


We know that God will work all things together for good for those who love Him and are called according to His purpose. ~~Romans 8:28

---

Tuesday, November 29, 2011 1:05 PM EST

Stay Tuned...BAD NEWS coming soon...

---

Saturday, November 26, 2011 2:33 AM EST

Check journal history for any missed updates!

This will be short because exhaustion just doesn't describe how I feel. Once again I find myself saying THANK YOU without time to properly Thank anyone, and while I KNOW you understand, I just want you to know what it means to me that in spite of that you take the time to say hello and spread encouragement to us. God Bless you! I love seeing Old friends, New friends and lurkers alike leaving such supportive messages, it DOES mean a lot to me!

Lisa IS improving and getting stronger everyday, David is almost back to his old self and I think after his IV iron infusion Monday he will be in a MUCH better place. Christian has been a huge help and we are so thankful he is here (BOO HOO, he goes back tomorrow and will probably not be back home until after exams). Then we have Rachel...many of you may remember that she has a chronic, quite serious medical issue that she doesn’t like me to discuss in detail (she is 13) however, doesn’t mind me talking about as I long as I don’t give intimate details. Rachel has had an exacerbation of her health problems while we were in Philly and in spite of the fact that Meemaw took excellent care of her, it only got worse with the stress of us being gone. On top of that Rachel got the virus...that compounded the problem. The good news is we caught the relapse early and are on the way to ensuring she gets healthy again. The bad news is, we spent the past two days trying to hydrate her, although we were able to do it NOT in the hospital...being a nurse has its advantages...but it can also wear you out. I feel blessed to have such a great medical team on our side.

So while Thanksgiving wasn't the way we had hoped or planned, it WAS spent at home...together. We didn’t have a turkey or ham (or any meat, for that matter...and that isn’t too unusual at our house these days)...but if you have seen pics of me, you probably realize I am a good cook (if I do say so ), and I managed to serve up a decent meal...that was all the better because we were HOME and TOGETHER!

I hope you all enjoyed a special day with someone you love...that is the TRUE meaning of this season we are entering. It isn’t about the presents, the food, the trappings the pretty lights...although I would love those things, who wouldn’t...Do something for someone else and bring joy in to YOUR life...we don’t have a lot to give, other than ourselves...so our newest charitable endeavor which we started the process earlier in the week before everyone got so sick, will begin soon. We will begin taking Bandit to our NEW Ronald McDonald House here in Charlotte to spread some cheer! For those who don’t know, Bandit is a CERTIFIED Therapy Dog (through TDI) and Rachel is his Trainer/Handler. Pete and I have spent far too many days and nights at Ronald McDonald Houses, both in Chapel Hill and Philly (the house in Raleigh was always full when we needed it...as is the one in Philly typically). We KNOW how much the children look forward to entertainment following the evening meal (Lisa is ALWAYS excited to see what they will have for her to enjoy)...so we hope to share some happiness with others. What we will get back will be FAR MORE than we put in, we already know that. NOW my job is to get everyone WELL...and get some rest so I STAY healthy! I have already completed all of the paperwork, we are just waiting on a date for them to give us group orientation.

So much for being a short update. I caught a second wind as I typed! See, already getting something out of the RMH volunteering. THANK YOU for sticking with us, you are AMAZING FOLKS.

---

Wednesday, November 23, 2011 10:28 PM EST

So many emotions are swirling in me tonight as I read your beautiful, kind words. I appreciate those of you who have stuck with us on this journey and those who have had time to let me know you are here.

Lisa is HOME, Praise God. They have cleaned house at the hospital and we were one of the fortunate ones who were cut loose for the holidays. We don’t have anything special planned for our meal tomorrow...except the fact we will all be together...and once again, that is truly enough.

I am exhausted, so it is best to cut this short before I get maudlin and say I am THANKFUL for my family, my friends and those of you who are SO MUCH MORE than “just” Internet friends. Those who have met me in person know I never meet a stranger...I truly DO feel connections with so many of you, even if we have never met face to face.

My Dad brought Christian came home this afternoon, David is much stronger, Rachel and Lisa are both quite weak and ill and Pete and I are just thankful to have everyone under one roof again for the first time since Lisa’s MAW trip. I have slept in 12 different places in the past 30 days and I look forward to being in my own bed once again. The children are tucked in bed and that is where I am headed...Good night all and... HAPPY THANKSGIVING!!!!



Wednesday, November 23, 2011 1:38 PM EST

The doctor was just in. She said she isn't ready for Lisa to be discharged yet... they ordered more labs and are doing vital signs every two hours....THANK YOU for checking on us, I know Thanksgiving is tomorrow and so many have plans. ENJOY, Stay safe and wash your hands!!!



Wednesday, November 23, 2011 2:38 AM EST



We are still here at the hospital and I am tired. Praying hard I don't get this virus, I will be of no use if I do. They have stopped Lisa's fluids for the moment, she has had over 1000 cc of fluid in, zero output. They are concerned with fluid overload; however, as I told them, she was SO dehydrated, we will probably need more fluids to get any output. Her fever continues to spike to 103; however, decreases to 100 with Tylenol. I am so tired, I am really too old for this.

Lisa is so weak, she was delirious at one point, talking out of her head. My sweetie, with the high BP, has been running 84 over 39 for the past 6 hours...that is nerve wracking....

I can't tell you what it meant to log on and see all of the support and love! God Bless you all for sending me such encouraging messages, it DOES renew me! I will update as I know more. We really need lots of prayers, we have some unspoken needs and this latest hospitalization is only adding to the worries/concerns.


Tuesday, November 22, 2011 8:38 PM EST


Lisa has been hospitalized, prayers please...we are exhausted. Rachel is also quite ill, please pray she stays out of the hospital as well. David is better, Christian is at my parents, away from the germs. Please pray Pete and I do NOT get sick!!


Tuesday, November 22, 2011 8:18 AM EST

I just got off the phone with my Dad. He and my Mom are going to pick Christian up, Praise God. He will stick to the back roads as much as possible, which is easy to do, it just takes longer. Lisa nearly cried she was so relieved. She is not retching anymore;however, she is quite ill still. Please keep her in prayer. Thank you Jan, for trying to figure out how to help me, you are incredibly kind! Yo, Thank you as well for your offer to get Christian! It meant a lot!

Monday, November 21, 2011 10:48 PM EST

David has been quite ill with a stomach virus. Now Lisa has it. I am supposed to
pick Christian up from school tomorrow; however, I am worried Lisa will be too
ill OR Pete and I will be sick and unable to drive a long distance. IF you are
able to help me get him home tomorrow (11/22), PLEASE let me
know. He gets out of school at 11:40 AM. Let me stress, Christian is NOT sick
(and he has NOT been around us); therefore you don't have to worry about picking up a stomach virus from him. Thank you for considering this. Forgive me, I am desperate.

---

Monday, November 21, 2011 10:48 PM EST

David has been quite ill with a stomach virus. Now Lisa has it. I am supposed to
pick Christian up from school tomorrow; however, I am worried Lisa will be too
ill OR Pete and I will be sick and unable to drive a long distance. IF you are
able to help me get him home tomorrow (11/22), PLEASE let me
know. He gets out of school at 11:40 AM. Let me stress, Christian is NOT sick
(and he has NOT been around us); therefore you don't have to worry about picking up a stomach virus from him. Thank you for considering this. Forgive me, I am desperate.

---

Friday, November 18, 2011 6:47 AM EST

Make sure to check the journal history if you missed any updates.


We arrived home late last night and it was great to sleep in our own beds. Thank you for your kindness, your prayers your messages of support and for understanding how far behind I am. Only two MD appts for us today and Pete starts inventory at his work today...so we are right back in it. Lots of unpacking, bill paying/juggling, etc to catch up on...but you don't need/want to hear EVERY detail of our lives...so I will just say...busy...

My Mom-in-law has done an AMAZING job caring for David and Rachel and they have done a wonderful job giving her a hand with everything. It isn't easy to step in, in a strange city and get teens EVERYWHERE they need to be, fed, house cared for etc....how THANKFUL we are!

---

Wednesday, November 16, 2011 9:18 AM EST

Make sure to check journal history for missed updates.

We are still in Philly...waiting on the MD. I am better and hoping that my illness was an exacerbation of a chronic health problem I have. I don't want Lisa and Pete to have to suffer through that. I will get back to the Disney updates ASAP. In the meantime, how about a teaser photo....



Tuesday, November 15, 2011 1:38 PM EST

We left the hospital last night to stay at the RMH until Wednesday when we see the MD again. Lisa's INR was 2.02, Praise God. Sorry for my delay in updating, I am quite ill as Lisa B will attest too, she heard how sick I was last night. Lisa is having tachycardia now which is concerning. You might remember Lisa is consistently bradycardic, especially during sleep...which was evidenced again by a week on the cardiac monitor. Yesterday morning, I got her up as if we were at home and had her up and busy the entire morning, as well as most of the afternoon. Her heart rate jumped up and stayed there consistently the entire time. She was in the 130's and as high as the 150's at times...possibly higher, I didn't monitor watch. What alerted me to the rate to begin with was I noticed Lisa seemed to be having difficulty at times taking a good breath and she seemed labored. She denied any problems to me; however, during the nurses afternoon assessment, she also noticed Lisa having problems getting her breath. Lisa admitted to her she was having to breathe very deeply to catch her breath and that her heart, while not hurting, was beating very fast. I was assured that because she was in Normal Sinus Rhythm, that was reassuring. As we were being discharged yesterday, Lisa was still having rapid pulses, which continued throughout the evening. At bedtime her rate was finally down to 116. I have no idea what she was during the night, I didn't check. One suggestion was her rate had increased because she was excited to be leaving the hospital. That couldn't be true, she had no idea until the late afternoon we could go home...at which point she burst into happy tears. Today when she got up, her rate was 96. Very Unusual.

Pete and Lisa have gone out to a great museum here in Philly to have a fun day...I sadly could not join them, it broke my heart. I talked to Lisa B a short time ago and she said I sounded much better today...I feel slightly better as well.

Thank you for the cards Susan, Pat, Rita, Louise Angie, Hara (and stickers) and Sylvia (and $5) and Nana and Papa (and cash, Lisa has it for the museum). Joyce, your generous meal vouchers arrived just as we were being discharged yesterday...I will put them up for future trips to Chop, what an awesome gift, Thank You!!

I want to Thank you all for caring for my Princess and for your kindness, It is a bit surreal to think a month ago we were in Florida, we are still in Philly and next Thursday is Thanksgiving...I am a bit weary, I know it is because I don't feel well...Please keep the prayers coming for my darling!

---

Monday, November 14, 2011 11:49 AM EST

If you missed any of the updates from the past few days, just click on journal history to catch up..


ARRGHHH!!! I have asked FOUR times this AM if they had Lisas INR levels back ... "Not Yet"...They just came in to say they hadn't drawn it! "The Night nurse thought the lab was doing it"....I told them I never saw her come in and do it and I didn't sleep again last night. They told me I must have been in the shower (I was at 6:15 AM)...so we wait...





Sunday, November 13, 2011 10:49 PM EST


Hello all, Computer is slow today at the hospital, like everything else. I was ECSTATIC to see Lisa's INR at 1.56, The docs were less than impressed; however I didn't let that dampen my enthusiasm. They don't know how many of you are praying for Lisa and lifting her up! Plus, they told us the other day they aren't as knowledgeable as I am about administering coumadin since so few pediatric patients take it, and those that DO require it typically take it for reasons other than Mitral Valve Implants... It is always refreshing to have docs admit they don't know everything, I actually appreciate that and the fact they use our input and the fact I KNOW Lisa and how she reacts to things. We are at least going in the right direction and haven't gone backwards today, which is a blessing. The bruising is starting to lighten up (it will be a LONG time before it is completely gone, I am afraid). In the meantime, we stay the course and hope for labs to continue to improve.

It has been a MUCH better day and I do credit the prayers for that! I DO have great Faith and Belief in the Lord.

Each of you who have prayed and lifted us up have had a hand in seeing this reprieve from surgery. I am in such a better place than I was this past Tuesday following Lisa's ECHO when they told us in addition to the pulmonary stenosis the Mitral Valve was failing. I was so scared and tired that night and spent it on my knees. While it is true the mitral valve has now become another problem to follow, it is MUCH better than they and we feared from the ECHO! I wanted them to repeat the ECHO Thursday, just to see if the prayers HAD changed anything..they wouldn't but I would NOT have been surprised to see the ECHO reading correlating with the cath now...THOUSANDS were lifting her up Wednesday, all around the world...How amazing and humbling to know we have once again been spared surgery for now.

One more request please...Lisa's urine output has been decreasing the past two days. She is also not eating, just as she wasn't at home. In spite of that fact, she has gained four pounds since admission last Monday. They don't want to do a lot here in the way of workup, etc, although they DID do a urinalysis this AM they said was normal. There is no explanation for the continued weight gain, except FINALLY I have others outside of the family seeing that this is occurring. Prayers for answers/resolution would be welcome!

Special Thanks to Angel JJ for visiting us yesterday and taking me back to the RMH last night!!!

Lisa and I were goofing off with the computer and she wanted me to share these pictures with you...these are the tame ones.

---

Sunday, November 13, 2011 10:49 PM EST

If you missed any of the updates from the past few days, just click on journal history to catch up..


Hello all, Computer is slow today at the hospital, like everything else. I was ECSTATIC to see Lisa's INR at 1.56, The docs were less than impressed; however I didn't let that dampen my enthusiasm. They don't know how many of you are praying for Lisa and lifting her up! Plus, they told us the other day they aren't as knowledgeable as I am about administering coumadin since so few pediatric patients take it, and those that DO require it typically take it for reasons other than Mitral Valve Implants... It is always refreshing to have docs admit they don't know everything, I actually appreciate that and the fact they use our input and the fact I KNOW Lisa and how she reacts to things. We are at least going in the right direction and haven't gone backwards today, which is a blessing. The bruising is starting to lighten up (it will be a LONG time before it is completely gone, I am afraid). In the meantime, we stay the course and hope for labs to continue to improve.

It has been a MUCH better day and I do credit the prayers for that! I DO have great Faith and Belief in the Lord.

Each of you who have prayed and lifted us up have had a hand in seeing this reprieve from surgery. I am in such a better place than I was this past Tuesday following Lisa's ECHO when they told us in addition to the pulmonary stenosis the Mitral Valve was failing. I was so scared and tired that night and spent it on my knees. While it is true the mitral valve has now become another problem to follow, it is MUCH better than they and we feared from the ECHO! I wanted them to repeat the ECHO Thursday, just to see if the prayers HAD changed anything..they wouldn't but I would NOT have been surprised to see the ECHO reading correlating with the cath now...THOUSANDS were lifting her up Wednesday, all around the world...How amazing and humbling to know we have once again been spared surgery for now.

One more request please...Lisa's urine output has been decreasing the past two days. She is also not eating, just as she wasn't at home. In spite of that fact, she has gained four pounds since admission last Monday. They don't want to do a lot here in the way of workup, etc, although they DID do a urinalysis this AM they said was normal. There is no explanation for the continued weight gain, except FINALLY I have others outside of the family seeing that this is occurring. Prayers for answers/resolution would be welcome!

Special Thanks to Angel JJ for visiting us yesterday and taking me back to the RMH last night!!!

Lisa and I were goofing off with the computer and she wanted me to share these pictures with you...these are the tame ones.

---

Saturday, November 12, 2011 7:45 AM EST

If you heard a little scream it was just me...Lisa's INR is 1.2 this morning...SPECIFIC PRAYERS for it to rise would be WELCOME!!!!

Friday, November 11, 2011 10:45 PM EST


First, Thank you for all of the wonderful Veterans Day Wishes...Pete served proudly, as did I as his wife. We still love this great land of ours, even if we do think his service caused all of the health issues...

Thank you for the e-cards Lynn, Sandy and Joyce, Lisa loved them. Also, Emma, please tell your sorority sisters how THRILLED Lisa was with the balloons! Frank and Alice THANK YOU for coming to visit and for the gifts for Lisa, what a treat! I have my socks on as I type, God Bless you!

Now for the news we have ALL been anxiously waiting to hear. Lisa’s next surgery can be put off for a while longer...we don’t know when that will be; however, it will not be before the holidays if the good Lord is willing! Praise God!! Her cath showed that while she indeed DOES have moderate pulmonary stenosis, the pressures indicate we can wait for a while longer to repair. Her cath also showed that the mitral valve (which we had no idea had any problems until the ECHO on Tuesday) has a moderate leak; however we are STILL able to hold off on that surgery as well. The worrisome part of all of this is that the ECHO’s both in Charlotte and this time in Philly showed Lisa in desperate need of surgery. We were told Wednesday morning they weren’t sure if we would even be able to return home before the surgery...so to have this news is a HUGE relief! It is as if someone took a brick out of my stomach. It would take a lot of time and explanation to try and explain here what is going on and most of you wouldn’t want to read the whys of it anyway...what we all wanted to know is NO SURGERY in the immediate future! What will happen in the next few weeks/months? I don’t know...I am living in the moment until the next shoe drops. Maybe after I sleep I can explain more...I am so tired; however I HAD to share this news with you TONIGHT!!!! God is GOOD and PRAYER IS POWERFUL, NEVER forget that. One thing we are sure of is that there will be more frequent cardiac caths, it is the only way to get accurate pressures on Lisa, unfortunately. But once again, PRAISE GOD! May I get an AMEN on that!

Lisa is still awake, whenever I spend the night she never sleeps, when Pete spends the night, she has slept through the night BOTH nights (from sheer exhaustion)! The bruising is still very bad and she is quite swollen. She has developed a rash on her legs that could be heparin related, we are watching the rash.We have no idea when we will get out of Club Med this time. The last cath it was 5 days post cath. It all depends on her numbers for her INR. Her goal is 2.5 to 3.5 and she has to be at least 2 and trending upwards before they will let us go home. Until then, she has to stay on IV heparin, due to her mitral valve. Her last INR was 1.28...we started at 1.4, fell to 1.26 and now have started trending upwards again. I think we will be here until at least Sunday...probably longer...

Thursday, November 10, 2011 10:35 PM EST

Once again, I want to Thank each and every one of you for the prayers. It has been a long day and we are simply waiting on the results and the blood levels to improve. I saw some of the docs out in the hallway about thirty minutes ago, although I am not optimistic we will hear anything tonight. LIsa has a bruise on her right side ; however, the one on the left is quite disturbing. It is about 6 inches by 8 inches and extends into her abdomen. It is quite painful and sore and ooozing slightly. It took me forever to work the pressure dressings off both sides, she is so tender and it was scary to her. We did get her up to the playroom for a bit and she had fun for a change. She desperately wants to go home. She has loved her e-cards, Thank you so much Lynn, Andrea and Alexa, Joyce and Gail...Gail, even our housekeeper can't wait to find out what happened to Nugget! Joyce, Please DO come see us, looks like we will be here...EVERYONE Thank you for EVERYTHING!!! Coles Foundation, Lisa LOVED her Minnie Mouse Face balloon!!!

Did you know today is the Marine Corps Birthday???

SO, in the middle of the night while I was NOT sleeping I was working on an update...which I FINALLY have time to post, this Internet connection frustrates me at times....

Trip Report Continued: After Christian and I proved he was indeed a member of our household by showing our address on his driver’s license (something I had already done long distance for Make a Wish and GKTW back in April and even had to get notarized for them), we went to Amberville Train Station to gather everyone and went in search of Katie’s Kitchen. Keep in mind it is early in the day and not too many people were around. It is also not labeled. We walked for a bit until we realized we must have passed it. Lisa was NOT in her wheelchair and fading fast, when the kindest gentleman stopped and picked she and I up in a golf cart and delivered us right in front of Katie’s Kitchen...where we happily waited on the others to show up and join us. We ordered lunch and the girls and I went in to the ice cream parlor to ask if we could eat inside (it was hot). They said of course, how about some ice cream while we wait on lunch. Lisa took them up on their offer and had the first of what would become to her...”My usual”... a chocolate cone. After one lick, Pete and the boys showed up with a HUGE bag of food, and Lisa, put that cone down on the table (they have flat bottoms) and ate her lunch...it was so much food the girls and I never could eat all of our sandwiches and sides! Lisa made room for her ice cream when she finished half her sandwich...and asked if she could have a second cone! Guess what I said???? This was such a whimsical venue, we spent a LOT of happy moments in here...and a few funny ones as well...NEVER have the children been able to eat all of the ice cream they desired..and it was made to order! I LOVED that each child was treated as a person and allowed to pick what they wanted...and were NEVER made to feel rushed or hurried! They were ALWAYS waited on before the adults...I LOVED IT!!

---

Thursday, November 10, 2011 10:35 PM EST

Once again, I want to Thank each and every one of you for the prayers. It has been a long day and we are simply waiting on the results and the blood levels to improve. I saw some of the docs out in the hallway about thirty minutes ago, although I am not optimistic we will hear anything tonight. LIsa has a bruise on her right side ; however, the one on the left is quite disturbing. It is about 6 inches by 8 inches and extends into her abdomen. It is quite painful and sore and ooozing slightly. It took me forever to work the pressure dressings off both sides, she is so tender and it was scary to her. We did get her up to the playroom for a bit and she had fun for a change. She desperately wants to go home. She has loved her e-cards, Thank you so much Lynn, Andrea and Alexa, and Gail...Gail, even our housekeeper can't wait to find out what happened to Nugget! Thank you for EVERYTHING!!!

Did you know today is the Marine Corps Birthday???

SO, in the middle of the night while I was NOT sleeping I was working on an update...which I FINALLY have time to post, this Internet connection frustrates me at times....

Trip Report Continued: After Christian and I proved he was indeed a member of our household by showing our address on his driver’s license (something I had already done long distance for Make a Wish and GKTW back in April and even had to get notarized for them), we went to Amberville Train Station to gather everyone and went in search of Katie’s Kitchen. Keep in mind it is early in the day and not too many people were around. It is also not labeled. We walked for a bit until we realized we must have passed it. Lisa was NOT in her wheelchair and fading fast, when the kindest gentleman stopped and picked she and I up in a golf cart and delivered us right in front of Katie’s Kitchen...where we happily waited on the others to show up and join us. We ordered lunch and the girls and I went in to the ice cream parlor to ask if we could eat inside (it was hot). They said of course, how about some ice cream while we wait on lunch. Lisa took them up on their offer and had the first of what would become to her...”My usual”... a chocolate cone. After one lick, Pete and the boys showed up with a HUGE bag of food, and Lisa, put that cone down on the table (they have flat bottoms) and ate her lunch...it was so much food the girls and I never could eat all of our sandwiches and sides! Lisa made room for her ice cream when she finished half her sandwich...and asked if she could have a second cone! Guess what I said???? This was such a whimsical venue, we spent a LOT of happy moments in here...and a few funny ones as well...NEVER have the children been able to eat all of the ice cream they desired..and it was made to order! I LOVED that each child was treated as a person and allowed to pick what they wanted...and were NEVER made to feel rushed or hurried! They were ALWAYS waited on before the adults...I LOVED IT!!

---

Thursday, November 10, 2011 2:37 AM EST

Remember I can't send out but one journal notice per day. Please check journal history, I am updating quickly these days and you might miss something.

I have been hearing for three days how sweet kind and nice I am,t they keep[ telling me it is my Southern charm and manners. They found out last night at 8:30 that my easy going nature stops when you upset my child. They wanted to move us AGAIN. I didn’t blow my top or yell or scream; however, they knew after the day I had, I was not playing around anymore. I did tell them I was ticked, and I know from the look on my face they got it. Because of the fiasco, LIsa didn’t get back to her bed until after 10 PM. One of the nurses tried to joke with me about how I was the most polite angry parent they had ever seen and I told her I could forget my manners very quickly and it wouldn't be pretty...more just happened in our room at 2 in the morning; however, I will not bore you.

We are simply waiting to see if surgery is inevitable in the near future, or if we can wait for a while longer. I am claiming that we WILL be able to wait a bit longer, each and every day is a gift and a relief and makes Lisa one step closer to getting the adult valve she needs. Prayer is powerful!

Tommy, thank you for the e-card, it was waiting on her when we returned to the room late lat night.

Wednesday, November 9, 2011 10:57 PM EST


After a LONG and tear filled day, we are back in our room...after they made me pack up EVERYTHING to move to another room and THEN decided to not make us move after I moved half of it...the cath went well, they were able to get the pressures they needed, Praise God. Now we wait.

Lisa is exhausted, bruised and was sick earlier due to the anesthesia. The doctor's will be having a conference tomorrow at some point, we do not know if they will have any definitive answers or not, it might take a bit.

The next step will be for Lisa's coumadin levels to be theraputic before they will release her.....so to all who are praying for our sweet Lisa, this is our next prayer mission.

We are so thankful for all the prayers, thoughts, messages and e-cards and humbly are asking for more prayer's.


Wednesday, November 9, 2011 1:48 PM EST


Lisa was just taken downstairs for her cath. Pete has gone to get us something from the cafeteria, I never leave the floor, something always happens if I do. She should be in the cath approximately 3 hours and then 6 hours in the cardiac Recovery Unit. PLEASE keep the prayers coming. Your messages of support mean the world to us!

Wednesday, November 9, 2011 10:45 AM EST

We just had news that the cath has been bumped to the early afternoon....we are calm and at peace. Thank you for the continued prayers. As always happens, today is the day Lisa wants to eat...she hasn't had anything since yesterday at lunch except for liquids because she wasn't hungry. But she is hungry this morning, poor sweetie...


Wednesday, November 9, 2011 7:15 AM EST



After I posted yesterday we received some news that doesn't sound encouraging. They feel Lisa's Mitral Valve Implant isn't working as well as they had thought and it actually seemed worse than the pulmonary stenosis at this point. They also think the pain all the way back to January WAS and is cardiac related (DUH! I didn't need a test to tell me what I have been saying all along). Of course, after todays cath, which is scheduled for noon, we will hopefully know more answers. Although they told us to not expect an immediate decision, they will have to calculate the values and weigh many variables...then present Lisa at conference to decide what is the best plan. The good news is, she slept all night and Pete is still asleep. I got less sleep than them and I returned to the RMH for 8 hours (includes travel time). It takes 10 minutes just to walk to the parking lot here and then navigate OUT of the parking lot and drive through Philly...we are simply THANKFUL to be here at CHOP. They are the best!

After the news yesterday, it appeared Lisa was getting ill...sore throat, fever, sneezing. THANKFULLY her temp was down through the night and the plan is to cath as scheduled..it really scared us though! We do NOT want to have to postpone this cath if we don't have to.

I am not up for individual responses at the moment. I spent most of the night crying and praying, so while I am refreshed in one way, I am still not rested. Hopefully the Princess and her Dad WILL be...they need/require more rest than I do and it WAS nice to have a bed to stretch out on.

To all of our faithful friends, loyal readers, new friends who have begun to post and yes, our lurkers...it means a lot to me to know you are there lifting us up and I KNOW God Loves Lisa even more than I do, He will protect her during todays once again scary cath. They need to get simultaneous pressures and she has an occlusion to her right femoral artery...and they need to put the cath in two places to get these numbers. Our favorite anesthesiologist is putting Lisa to sleep, so that is a comfort and we do trust these great minds and skilled hands. Just please contiue to blanket us in prayer, we will be in the cardiac recovery unit most of the day. I hope I will have access to a computer, it keeps me (sort of ) sane. It is a huge comfort to log in and see your messages of support...it DOES help!



Tuesday, November 8, 2011 3:45 PM EST


We finally tried to go to sleep last night around 11:30 and that is when everyone decided it was time to disturb us. I will not bore you with the grim details and lack of sleep, if you have ever been hospitalized you already know. Lisa needed heparin IV checks every hour, vital checks every two, blood draws' every 4 hours...then her heart rate dipped into the thirties and forties and they freaked out...forgetting that I had already told them that when she was sleeping, her bradycardia could be that low routinely...and it was. Plus we have a child next door who cries all the time, poor sweetie...and poor us. However, we have a bathroom, Praise the Lord!

So, what did I do when I couldn't sleep and was slightly delirious? I worked on the next installment of our amazing trip! I have had lots of stops and starts today; however, I am finally able to post after being downstairs for a two hour ECHO! No results yet. WE are waiitng to find out what time the cathis scheuld for tomorrow, so we can make our plans for the evening. Lisa and Gail THANK YOU for Lisa’s e-cards, she loved them. Laura, Moira and anyone else who might find themselves in the area...we would LOVE to see you, please feel free to say hello should you find yourself with the time and the opportunity, what a treat that would be!


Back to my story...We entered the gates of GKTW, as you saw in the prior Disney update and they instructed us to go directly to the House of Hearts. Everyone piled out of the SUV and in to the fun building. They began the check in process and Lisa played on a game at the computer kiosk, while the older ones sat in the lounge area, it had been an early morning!

Lisa’s first glimpse of GKTW and all of the magic it contained. I have NO idea what happened to some of our photos, I had Rachel receiving her Shamu (they didn’t include Christian on any of the special children’s gift...they said he was too old, poor sweetie...too old at 21.David gave his Shamu to Lisa, which was so sweet). Lisa LOVED her Mickey MOuse...but I have no idea where some of the photos went....

They checked us in and told us our villa wasn’t ready; however, we could roam around the village and get some lunch.I asked about orientation, as you may know, you have to go to orientation to get your tickets and special button/passes to navigate through the theme parks. They typically do an orientation in the mornings, evenings and sometimes in the afternoon. I had checked prior to arriving if they would have a three PM orientation on our arrival day and I was assured they would. They celebrate Christmas each and every Thursday night at the village and I did NOT want to miss out on the fun. Those who have known us a while know our past THREE Christmases have NOT been good, due to medical reasons. I wanted to celebrate!!! An exceptionally kind volunteer offered to do an individual orientation for me so I sat through all of the info (which, thanks to prior research, I already knew. I can’t imagine having it all dumped in my lap at orientation. I would have been completely overwhelmed without a plan)! I was so grateful!
While I sat through the hows and whys, Pete took the children over to Ambervile Train Station to play. There was some small video games, Model boats to navigate around the water from steering wheels inside, game systems like the wii and a huge miniature village with trains moving around inside, as well as a train tat rode on a track suspended for the ceiling. One of the volunteers regaled the children with stories of trains, which they all enjoyed, especially David...and for everyone that doesn’t know it was all FREE! No coins needed, except for tokens from the claw game where everyone could easily win a McDonald's happy meal prize. There is even a small train ride, which we all loved and so much more that I can’t possible share it all here. They had a blast...and ME? I had to keep everything straight, there was a LOT to go over and I was happy to have the Bunny Book...it is the book they give you at orientation full of information you need to navigate the village. We had one small glitch, they had not included tickets for Christian to anything. After speaking with one of the mangers, she had me get Christian. He had to prove that he sill lived in our home and they did give us tickets for the theme parks. He was NOT included in any of the special things reserved for those under 18, such as the special pillows. He said it was okay; however I know he would have liked one...I am gong to learn how to make them and make different pillowcases for the other three to interchange their pillowcases as well. Up next...LUNCH!












































Theses were photos Pete took of the children roaming around Amberville Train Station while I was at orientation.


Monday, November 7, 2011 8:53 PM EST


We arrived at the hospital early this morning. After we unpacked and got semi settled they came in to tell us we were going to switch rooms to a PRIVATE room AND Bath! Woo Hoo! That is good news, just wish they told us before I unpacked...haha. The Princess finally ate lunch at 2:30and hasn't eaten again she was too full. She had to get 3 IV's this afternoon...not fun; however, she was brave. So happy to be here FINALLY! We just got home from Disney 2 weeks ago, seems like a lifetime... My MIL is doing a great job getting Rachel and David where they need to be and we are so appreciative, it isn't easy and I KNOW that. So happy she was willing and able to help us. Spoke to Christian, he sounded overwhelmed with all he has to do....We are simply praying for a good cath and report for Lisa!

---

Sunday, November 6, 2011 10:53 PM EST

Jen I would have LOVED to meet your in-laws and Thank them in person! Not sure what our return plans are as of yet...I will try and keep you posted!

Kristin, I don't text! We don't even have the capability. Please call the cell if you get free.

Thank you everyone for the wonderful messages. I am happy to say that we are at the Ronald McDonald House and will be here until we make our way back to NC. Lisa will be admitted to the hospital tomorrow morning to start on the heparin. The cath is scheduled for Wednesday, we will find out the time tomorrow.


Sunday, November 6, 2011 00:13 AM EST

We have arrived in Philly and have a place for tonight...tomorrow is another adventure and we will just trust that by noon tomorrow we will know where we will put our heads down to sleep. It was a very tough journey here this afternoon and there is some kind of group here of older sorority women who are wandering the hallways laughing, screaming and drinking...so not sure how much sleeping we will be doing tonight anyway. Thankful to be in Philly, at least Lisa can be out of the car for a day before we check in to the hospital.

I spoke to my MIL as well as David and Rachel. All is well and they are getting along well and to all of the activities without incident. I wanted to share the next installment of our MAW trip with you.

When I last left you, we had just arrived in style at the airport and were so happy/excited. We were dropped off at the USAir terminal so we didn’t have far to travel. We went inside and the line/wait was LONG! After about 5 minutes a gentleman came and directed us to the First Class line. I inquired if he was sure it was okay and he said he was the supervisor, no worries. Unfortunately the man behind the counter didn't get the memo and gave me a hard time at first...until I looked the manager’s way and he came over to say he had directed us to this line. He waited on us; however, he wasn’t happy...we were too excited to let his gruff manner make us unhappy! We checked one bag and proceeded to TSA...with 6 carry-ons, 6 personal items, 2 medical bags and a c-pap machine. Then the fun really began. We noticed security was MUCH tighter than it had been when Pete’s Dad died and we flew in August. There was none of the jovial banter that there had been that day and the lines were long. For some reason, David kept setting the machine off...we never did figure out exactly why. LIsa was scrutinized very carefully and they even discovered a pack under the seat I forgot we had! They gave us a very hard time with Lisa’s drink, even after I produced the prescription. It took me calling the ladies name three separate times and asking her by name if she was denying LIsa her medical drink. I asked for her supervisor, who came right over, tested the drink and cleared her immediately with lots of apologies...I DO understand the security measures it is just a pain and so inconsistent, that I wonder how much good it actually does. In the meantime, while all of this was going on, Rachel had been flagged to have her crocs checked...so funny! We FINALLY made it through security, redressed, collected al of our belongings and headed for our gate. After we got settled, Rachel and I went straight to the newsstand to purchase a newspaper...I wanted to see her article in print! I asked the woman who took my money if she recognized the young lady in the photo...she said no, However, the sweet lady who greeted us as we came in to the store came over and immediately realized it was Rachel....it was SO much fun! When we finally loaded, we realized a friend from the tour choir Rachel is on hiatus from was sitting directly in front of us! She graduated last year and went off to college, so it was great to catch up ..and share the newspaper article with her and her Mom.
As you see, the children were having an amazing time.

I kept hoping for a little airport magic...allowing the children to go to the cockpit, a special drink (They let Lisa have chocolate milk on our trip to Baltimore back in August; however, not on the way back), a special have a good time...NOTHING!...There wasn’t any magic, although I kept telling the flight attendants anytime they were near, lol. We heard them wish TWO different people happy birthday. FINALLY, as we were landing the last flight attendant I told welcomed a special Princess on her Make a Wish trip...Lisa BEAMED with happiness and several people wished her a good time as they exited the plane. Finally everyone was off and we could leave! We eagerly found our way towards the monorail ride, so that we could collect our bags. It was fun!

We walked towards baggage claim where we met Stephen, our GKTW Greeter.
He had a HUGE smile on his face and you could tell he truly loved what he does. He posed for pictures with us,

then deftly led us to baggage claim to collect everything and took us to our rental car agency. He told us GKTW prefers National, so naturally our MAW chapter uses Avis...we did find this amusing. He regaled us with stories about the Village, most of the info I had learned right here on the DIS and told us about himself. He works at Crystal Palace, 4 ten hour days, so that he can have three days off each week and he volunteers every Thursday as an airport greeter for GKTW. He also has a famous cousin...who is the voice of SPONGEBOB! That intrigued all four of my children who asked him many questions about that.

Finally, after some initial problems with the rental agency, we found our vehicle (we didn’t get a choice, as some wish families report they do). It was a HUGE Ford Expedition...with less trunk room than my Van.

[
We managed to finally get everything in this HUGE vehicle and we were off for our first glimpse of Give Kids The World Village...what an amazing treat that was! You get to see it from my perspective, with the sun casting beams of light all around..it was exciting and so long in the wait to get there. It is hard to believe we only returned home 2 weeks ago tomorrow.

The first pictures are of the children on the plane and then on the “monorail” form the terminal to baggage claim. The picture of the girls in front of the white van was the only one I had at the rental place...it was someone else's van. The last two pictures are of us arriving at our new home for the next six nights.

---

Saturday, November 5, 2011 4:27 AM EST

Please remember I can only send out ONE journal notice update per day....although I will probably update much more frequently!



My little Princess...she came upstairs less than 5 minutes after I typed my update last night, she was happy but exhausted. She had to lie on me as I changed her and braided her hair for the night. She has a new nightgown, with a matching one for Molly (her American Girl Doll) and was THRILLED to finally be able to wear them. I had already changed Molly for her and she was waiting in the bed for Lisa to join her...where they are both sound asleep. Pete is sleeping soundly as well. Me? I am fine. I ask God to surround ALL who read here with His mercy and grace!

Friday, November 4, 2011 10:27 PM EST


WOW, what truly beautiful messages, my CB friends are simply the BEST!!!! We had a wonderful, albeit short visit with Christian. Lunch was delicious, we were able to take him to the grocery store for supplies and then play for a while in the campus arcade...it was a lot of fun! He should have been coming home this weekend, not staying on campus so it was GREAT to be able to see him before we left N.C.

Horrible weather to travel in...although once we crossed into Virginia at 5 PM it started improving drastically and absolutely NO rain here ....in Dumfries, Virginia! We made great time and Lisa kept saying she was feeling fine, so we continued driving. We stopped for McDonalds...The McRib is back...about the only thing I like at Mickey D's. We were looking through hotel coupon books as Lisa finished her fries and drove up the road a bit to Quantico, VA...we quickly left, the room rates were high. I finally got a nice lady on the phone at the Comfort Inn and we came in to the lobby to check in and discovered their pool would close in 15 minutes. Lisa's little eyes filled with tiny tear, the sweet lady took one look at her and told her she would keep the pool open until 11 PM, just for her. I think she will be tuckered out before then; however, we will see...They have a complimentary breakfast in the morning and Lisa is looking forward to some waffles!

I have very little minutes left on my phone, the Ronald McDonald House called us at 4 PM and there was a bit of drama about our stay...it is sort of sorted out; however, we can't even find out until Sunday if they have a room for us or not, as expected...it was the unexpected stuff that was unsettling and took 4 phone calls and over 40 minutes to sort out..as we drove down the Interstate...But for now, we are safe, the hotel is wonderful, Rachel, David and Christian are safely at their respective beds and all is quiet except for the tap of the computer keys. I need to get Lisa's C-pap and other medical supplies set up for the night, I simply wanted to say THANK YOU for the prayers and support. It means a lot to us!

---

Friday, November 4, 2011 1:54 AM EST

Just a quick note after a very long day. My MIL arrived Thursday afternoon while we were at the MD getting David's IV iron. I was so relieved to see her. My parents arrived just before my MIL arrived (bringing pizza). My Mom has been sick, so this was the first time we had seen them since before our trip to Florida.

We leave midday today and will stop by Christian's school so we can see him before we head towards Philly. It is pouring rain at the moment, I hope it stops soon; however, it isn't supposed to.

I would like to thank those of you who signed in and left us such kind words and for reliving some more Disney excitement with us. I will be checking in as I can and will possibly have some free time while Lisa is in the hospital to post the next installment of our journey...Thank you for your prayers and wonderful messages.

---

Wednesday, November 2, 2011 6:38 AM EST

AHHHH Lynn, you wrote this in the guestbook. "I wish you wouldn't even dignify critical comments with a mention on here. Just not worth even talking about!" To avoid a firestorm, I will answer this here. No matter WHAT I write, everyone has an opinion about what I should and should not say...so in the end, I will continue to write what I feel/think dear friend for this reason: If it is rattling around in my head bothering me, it helps to write it out here. :o) Then I release it from my brain, lol




Tuesday, November 1, 2011 8:38 AM EST

First to Lynn, I am incredibly sorry for all of the losses you have experienced, that is not easy for you I know dear friend!


We leave for Philadelphia sometime this weekend, things are a bit up in the air as Pete's Mom finishes up some last minute responsibilities. It is a ten hour drive minimum for us to Philly and too expensive to fly...so we will drive. This is hard on Lisa, so we hope to do it in stages. All of the children now know we will be going, we told Christian before the trip, David and Rachel last Tuesday and Lisa this past Sunday. She is okay with it all, at least at the moment, She remembers Mom and Dad making things fun for her last few trips, so I know she is hoping for that same experience before she goes inpatient and gets poked, prodded and stuck more than any child should have to! She also said she was looking forward to being an only child for a while (we always make a big deal about that, so that helps the excitement level and makes the sting of being away easier.

If anyone is interested in sending her a card here are the specifics of the hospital:

Here is the address:
Lisa Bettendorf ~ CORONARY CARE UNIT
The Children's Hospital of Philadelphia
34th Street and Civic Center Blvd.
Philadelphia, PA 19104-4399

You can also send "e-cards"
http://www.chop.edu/ecards/ecards.cfmHospitlaization

If anyone is in the area we would LOVE a visit!!! Just let me know if you are available it would be such a blessing to us!!

We need specific prayers for:

* Lisa's comfort and peace
* No pain
*Traveling Mercies
*Financial concerns
*Accommodations while in Philly. We need to be near the hospital and are hoping THIS time RMH can accommodate us. That is always hard for them it seems.
*My MIL as she cares for David and Rachel and my parents as they assist.
*Rachel and David as they deal with altered scheduled.
*Christian, who is too far away and has his own concerns/needs.
*God's Grace for us all, especially Pete and I as we once again face uncertainty for our precious daughter. It takes a huge emotional toll on a person.

I wanted to end this update with the first of many entires for our trip report. I realize some of you think we shouldn't have gone on this trip in view of Lisa's upcoming hospitalization and cardiac cath; however I have news for you...this family always has a medical odyssey happening and we NEEDED this trip to rejuvenate and move forward for the coming days ahead. Just look at the smiles/excitement on everyone's faces!

Here is my first installment:

Patience is a virtue I am told...so THANK YOU for sticking with us...I mean I have been home for an entire week and not one post about the actual trip...although in my defense I DID give you a few updates “from the road”...and I hadn’t planned on that!

I slept about an hour the night before our trip. There was so much excitement and add to that the fact RACHEL had an exciting article in the newspaper the day we left town...lets just say, there was NO WAY to sleep! My brother and Dad brought Christian home from college around 11:15 that night, October 12. Everybody else was in bed and Pete and Christian followed soon after he arrived home. I was still working. I finished up and slept for about an hour, them made the mistake of looking to see if Rachel’s article had posted yet...it had, so I spent time sending out emails and posting to Lisa’s website.

I had spent time getting my hair “just so”...big mistake, as you will see from the photos, I would have been better off leaving it au natural (my hair frizzed up as soon as we went outside, lol), due to the rain...in the photos the white flecks that look like snow are actually rain drops (and in the limo the white specks on Lisa’s pants are glitter.

Around 3:50 AM a tiny knock came at my bedroom door...it was Princess Lisa, too excited to sleep and wanting to get ready for her day! She was so excited she was actually quivering! I had made sure everyone’s clothes were lying out for this momentous day, so all she had to do was brush her teeth and hair, dress (she had a bath the night before) and she was ready...to wake up her siblings, which she did with glee!

All three of the guys had breakfast and I went around ensuring everything was ready. I looked outside about 5:10 and saw...the Limo! Now the boys both knew we would ride in a Limo, the girls had NO CLUE! I told them MAW couldn’t afford to send us in a Limo; which WAS true, except it was for the ride home, not for the ride TO the airport. There was some saga the day before where they weren’t going to even send that Limo; however, that was thankfully worked out while we were at the hematologist getting David’s IV iron.

I had Rachel and Lisa sit on the couch in the family room, while Pete, Christian and David took the luggage and wheelchair out to the waiting vehicles (they sent a Suburban for our luggage...which we really didn’t need, there WOULD have been room.

We then told the girls it was time to go and I went out first to try and capture their expressions. It was SO DARK and SO early...but that didn’t dampen their enthusiasm! We took a few photos, then loaded up into a VERY cool Limo, complete with soft drinks, water and flashing, funky lights on the interior roof..there was even a moonroof!! As you see from the pictures, the children had a BLAST and we were so excited to be in the LImo. They were goofing off, sticking their pinkies to to drink their drinks (Just like on Spongebob), and one you can see Lisa singing out her Praise of Thank You to God. It was SO MUCH FUN!!!!! We waved at our neighbors house; however, didn’t see a single soul, since the Limo came early. As we were driving down the ramp onto the Interstate we heard lots of honking and flashing lights...our neighbor had caught up to us and wanted us to know he had seen us...SO COOL! We felt like Rock Stars and joked about how once Rachel became famous we would travel like that all of the time. Our drivers were SUPER NICE and dropped us off in front of the extremely BUSY airport...but first they took two more pictures for us under the light from the terminal. EVERYBODY was stopping to stare at us, I am sure we were quite the sight. Then the fun (NOT) really began...

---

Monday, October 24, 2011 5:54 AM EST

Thank you all who prayed for us to have a wonderful time in Florida and for the lovely messages! I tried to update multiple times; however, the hotel and GKTW connection was not great and made it difficult to get online. Saturday is a day that I will NEVER EVER FORGET! I plan to write a Trip Report, as time permits, to let you know all of the magic that happened and the few Not so magical occurrences. It blows my mind, both the good and the bad...I can't believe how many people who DON'T know what Make a Wish is! Or how you become eligible for a "Free" trip. Let me assure you, we paid a HIGH price to have this trip, one I would GLADLY have never taken if I could have a daughter who was healthy, WITHOUT a Life Threatening Condition!

As for Rachel and the House of Blues...SIMPLY AMAZING! I can't wait to share that with you all as well!

We arrived home around 8:30 last night and Pete took Christian back to school, arriving back home late. I scrounged up food for the other three, got everyone ready for bed, set medical equipment up, etc. Reality is crashing in and I am trying to organize our week. WE have MULTIPLE appts. each and every day, between doctors and therapy, plus the typical activities. My uncle is having open heart surgery on his heart in a few minutes due to an aneurysm.

In less than two weeks we will be in Philly for Lisa's Cardiac Cath and hospitalization...Please turn back time and send me BACK to our MAGICAL Saturday morning! I have no idea when I will get to organize pics, I took over 3,000 photos...unsure of the number because Pete hasn't had a chance to download the last pics yet.

Lisa will be admitted to the hospital in Philly two weeks from today....I have NO IDEA what we are doing with David and Rachel yet, that is priority one...and to tell David, Rachel and Lisa...it will not be easy, although as Lisa cried yesterday when we left. I told her we would try to travel as we could (she LOVES being out of town, reality is lessened) and she told me that she would like to go to Philadelphia next. I asked her if she wanted to see her doctors and she said NO, she wanted to go to the stores, eat at some great restaurants and go swimming...she is remembering her last trip to Philly in December 2010....I need to figure out some fun, happy distractions while she is in the hospital...this really is not going to be easy. Eight is an age of understanding and fear and I know this is going to be scary/frightening for her. I need some happy surprises to take the edge off and I HOPE to have a few happy pics of our trip to bring with us!

Thank you again for your continued prayers, you have always been such wonderful supporters and friends!

---

Tuesday, October 18, 2011 4:36 AM EST

We are STILL having a GREAT time! It is like childbirth, you forget the bad and only remember the good, lol. I LOVE logging on and seeing who is still checking in on us, THANK YOU! Tonight is the Halloween party at Magic Kingdom, should be FUN! How much fun am I having? I keep forgetting to take pictures!


Friday, October 14, 2011 4:30 AM EST



Little mini update from the day:

3:36 PM 10/13 We are HERE!!!!! There was magic in the limo, not at the airport and then we were greeted by Stephen who volunteers for GKTW! What a sweetie...he made the airport fun and helped us navigate the car rental. Seems GKTW prefers National, so of course we have AVIS . They didn't have Christian on the ressie when we arrived (NO TICKETS, but they would let him stay) ; however, it is all straightened out, no worries. Lots of smiles and tears, a delicious lunch and of course, ice cream. They weren't going to let me have orientation until tonight and I explained about how Christmas was so important, since we missed it last year (actually the past three) and we never know the future. The sweet volunteer said it would be her honor to do an individual one for me...and she did! They sent us to lunch and then we went back to wait for our villa at the House of Hearts. They kept apologizing for the delay...I said NO WORRIES we are here!...Going with the flow, right? So we arrive at our villa when it is ready and they have transformed it for us...IT IS CHRISTMAS at our house! Wreath on the door, bows on the rocking chairs and tree in our living room with Mickey Santa and Tigger Santa, Nutcrackers and a snow globe! PURE MAGIC...Yes, I cried! We didn't realize ours was the only one decorated outside until AFTER we came inside. They had told us they celebrated all day long, even with the music they played, so we thought it was normal...but no, EXTRA PIXIE dust (extra special something) just for us! I had to share so you all knew we are living in the moment! And what a GLORIOUS moment it is!!!!
__________________

9:17 PM I am not going to update a lot...but I had to tell you Christmas was AMAZING!!! We had a blast! Just a teaser...I led a sing along on the carriage ride and our co-riders said they had the best time (One Mom actually said I kept it from being boring...who me??)...spreading joy makes me happy...Tomorrow will be full of even more joy...LOVE IT HERE! We are getting ready to have (FREE) pizza, Lisa just had her "jacuzzi bath the only way to get clean." Per Lisa, it is the best time EVER! She wasn't feeling well earlier, but perked up considerably! She was inviting everyone we met (and we met a LOT of people), telling them Rachel was opening the show at HOB. So much to share but you have to wait, time to play!

I forgot to say a special delivery arrived for Lisa while she was sleeping. She hasn't seen it yet, but I LOVE it..well, what I can see! It is perfect for the wheelchair and so cute! I think Lisa is going to be very pleased in a few minutes when I give it to her! THANK YOU to our dear friends for hunting us down at GKTW and spreading some magic!!!! What a HUGE surprise that was!
__________________

4:16 AM 10/14 I tried repeatedly to post a couple of photos for you around midnight, and continued to get a blank screen (I thought too many parents were on the wi-fi, then thought I had a weak spot for the computer) When I went to the photobucket acct just now (or tried to) I got this message: Site blocked. photobucket.com is not allowed on this network.
This site was categorized in: Video sharing, Visual search engines, Photo sharing
I have no idea why...but I DID try! Don't know how many updates I will be able to do today...but I am reading your wonderful messages, LOVE seeing you all here, Thank You!!! That is exactly why I am trying to give you an idea of how much fun we ARE having!!! The only sad part is Lisa truly doesn't feel well and hasn't had enough rest, yesterday was such an exhausting day for her after being so sick. Prayers for her please! Rachel said after the Christmas party last night she LOVED the party, she could cut loose and just be silly. We even had Christian up dancing! Not David, but he had his moment, much to his embarrassment..but he went with the flow, of course, he had no choice, lol

And, I just found these!

http://www.csarts.org/home

http://www.csarts.org/news/207-csa-m...house-of-blues

LOVE our messages!!! Thank You!!!


Thursday, October 13, 2011 4:10 AM EST

The Limo picks us up at 5:30...I can't believe 18 months after Lisa made her wish we are FINALLY going on her Make a Wish trip! She is beyond excited!! 

But I HAD to share one more exciting piece of news with you...Rachel was interviewed by a local reporter Monday and the article is in today's paper. It is already posted online. You can bet I will be looking for a newsstand and sharing with all who will listen that Rachel  is heading to Florida to be famous with her Princess Sister, HERE IS THE LINK, I hope you enjoy! It isn’t often in my world that a child is interviewed for the paper (although Lisa has been in magazines, video and TV)...to have two in one week...let’s just say the magic HAS already started! When the reporter was interviewing Rachel on Monday he asked me if I had another daughter who had just been featured in the paper on Sunday...that was kind of cool! If you haven't already, would you please leave a comment on the

---

Monday, October 10, 2011 10:25 PM EST

Lisa is quite ill and we could use some extra prayers. Her INR was much too high; however, what we need prayers for the most is her illness. Her Temperature was 101.5 at the MD, her throat looked “horribly red”, she is beginning to cough, has pain in her abdomen and is very dizzy when she stands. The Hematologist started her on antibiotics and they took labs. She feels terrible and it doesn’t help we had to be out most of the day. I have already made the call, she will NOT be at ballet tomorrow, she must conserve her energy. Her temp at bedtime was 103.2.

Rachel is on 2 new inhalers and it looks like we will be bringing the nebulizer to Florida as well.

David is doing well, although the doctor said his throat was looking very red and raw. He denies pain though...

Thank you again for the comments on Lisa’s article. If you haven’t had time to comment or email the reporter, I hope you will, for Lisa’s sake.



Sunday, October 9, 2011 6:15 AM EST

I can share something with you that has been in the works the past 6 weeks. There is a student in Lisa’s ballet class whose Mom is a reporter. When we first met,she found out Lisa was going on her make a wish trip and that she wanted to “Be Famous at Disney.” To have an article in the paper, the idea has to be “pitched” to an editor. Her’s liked it, so she set up an appointment for us to meet and Lisa could be interviewed. One morning, the girls and I went to Bruegger’s Bagels to meet Katya and she interviewed Lisa. As always when you are featured in a newspaper (yes, I have been a few times, mostly when Pete was gone to the Gulf War), a few things are wrong or “left out.” Brevity is key in the paper. She got my age COMPLETELY wrong, because I told her it was not news and wouldn’t tell her my age, lol...but she erred on the side of me being much younger, so good for me! Did you notice they didn't post Pete's age...why is a woman's age important, but not a man's, lol??? I will not sit here and pick her article apart, she also put in the plug for me about CHDs being the most common birth defect...I am passionate about raising awareness of Congenital Heart Defects, it is underfunded and NOT well known. Anyway, this post isn’t about me...It is about LISA. My little celebrity!!!!

Enjoy the article and PLEASE post a comment in their comments section or write the reporter, Katya...she is hoping if enough people express interest in the story, she can get them to expand the story and really make Lisa famous.


Click here to read the Article about Lisa



Thanks to my friend Jen, I have Lisa’s costume issue being taken care of, Thank you to Jen and her friend Brenda! Thank you again to my friend, Betty, who has appliqued THREE shirts for Lisa (SAME applique, first shirt I bought was too small and she put it on a short and long sleeved top for me this time, so Lisa can wear her skirt longer) and she tried to loosen Rachel’s costume.

My parents came to the sendoff “party” yesterday... They set things up while they had the dancers perform for Lisa and the rest of the family and Pete and I went over paperwork and got our expense check. It was so kind of them to give us the check; however, I will be honest, it was a lot less than we had been led to believe. It is causing us to rethink a few things...we still have to pay for five more days of car rental from Avis (because we arrive so early, the car will be due back to the airport early, which will cost an extra day). They are picking us up in a limo; however, they told us we will be in two cars coming home...they did give Lisa a cute white MAW t-shirt...and we got buttons. I really had no expectations other than what the wish granters told us~that there would be a party with pizza, drinks and a cake, as well as a little gift table for Lisa. There was pizza (yummy), soda, sugar cookies and a gift bag with chapstick, small note pad and pens, hand sanitizer and travel kleenex ...

Disney is almost here...what could be more special/magical than that?!!!!

---

Friday, October 7, 2011 3:48 AM EST

SIX DAYS until we leave for Lisa's Make a Wish trip! My brother has arranged his schedule to pick Christian up from college Wednesday night after his last class is over at 9 PM. THANK YOU BILL and Thank you Karen for offering!

I need help from anyone local who might have an idea about this... Several people volunteered to make Lisa costumes and one came through...however, I found out YESTERDAY that the two people who were going to make her a Rapunzel and Cinderella costume ‘just didn’t get to it”. Lisa is retaining fluid and I can’t simply buy a costume off the rack, which I would do if I could! Of course, I spent the better part of tonight looking online and things are just sold out or too small. Does anyone sew or know someone who does who might help me get this together before Wednesday? We have certain things planned where Lisa really wants to wear her costumes and this is a Wish trip, where all of your dreams should come true! The person who made Rachel's costume made it just a bit to snug through the bodice, so it could stand to be let out a smidge as well (she is a tiny thing I don't know HOW they sewed it too snugly). Also, someone made us family Wish Shirts to wear to the airport and they arrived with two being too small and three having the decals peeling upwards. Time and money are both huge factors; however, I thought someone might have some ideas how/where to make this happen.

Thank you in advance from the bottom of my heart for ANY help you might provide me! I really want this trip to be magical, her heart has gotten markedly worse as you know, since May 26 and we will be heading back to Philadelphia November 5 for a week plus in-patient hospitalization for a cardiac cath to determine if it is time for open heart surgery number 4. I am still trying to work out the logistics with THAT as well...Can we say too much stress...I need a live-in Manny (No, I didn't spell that wrong, loll)!

On a bright note...to A NONY MOUS...THANK YOU FROM THE BOTTOMS OF OUR HEART! We can't WAIT to share with the children on Saturday! I am picking Christian up today, he is coming home for Lisa's MAW going away party, it should be very fun! My sister's family were already committed to other plans, but my parents are attending!!! Lisa is going to be SO SURPRISED!!!

---

Monday, October 3, 2011 8:02 PM EST

I can’t let the day pass without wishing my baby boy a HAPPY SEVENTEENTH Birthday. David, may all of your wishes come true this year sweetheart! Christian came home for the weekend (first time in a month) and today Nana and Papa came to enjoy lunch with us. David received cards from relatives (some even had money :o) and the Z Family seen him a wonderful gift (he loves his ornament, tech dec and Guinness book. We loved the girls ornaments and can't wait to see Christian’s)!

We leave on Lisa’s Make a wish trip in TEN short days, I can hardly believe it! I want to Thank my friend Betty for making the girl’s shirts and skirts...She turned my clearance material and t-shirts in to two beautiful outfits for the girls! THANK YOU so much! My friend Karen and my friend Suzanne sent money to cover some very special magic and pixie dust for our family and the girls respectively and I can’t Thank the two of you enough for helping to make Lisa’s trip so magical! You were much too generous! I will give an update on Lisa after I have had time to speak to the family about her, I like them to hear big stuff from me, not read it on here. Lisa had a rough weekend, with chest pain and exhaustion...please pray she has enough energy to enjoy this long awaited trip!

---

Monday, September 26, 2011 2:29 PM EST

My lack of updates is because I am so busy I don't even have time to sleep most days. I have so much more to say, but only time for a quick note. I have some HUGE Thank you's to share as well...soon I hope.

Here is my update:

We had two MD appointments this morning, along with Respiratory Therapy and we are leaving shortly for flus shots for the younger three. I stopped home to check the mail and the phone was ringing. The cardiologist office was calling, Lisa’s Doctors in Philly want her to have the cardiac cath as soon as we can schedule it. It will be at least a 10 day trip, judging from past experiences (she was in the hospital 9 days last time and we have to go to Philly for this one). They have given us permission to go on the Make a Wish Trip; but, I am incredibly sad...Just because I knew they were going to say this, doesn't make it any easier to hear the news. If I could just go somewhere and have a good cry I would feel better. I had to escape to the garage to call Pete and nearly lost it, I can’t talk about it right now. More on the other appointments later. Thank you for my Birthday wishes and for praying for us!

---

Sunday, September 11, 2011 12:49 PM EST

Click on Journal history if you missed any of the latest health odyssey...

Pete and I have been invited to a fundraiser for the hospital this afternoon (I can' remember the last time he and I have been to an adults only event. They are even feeding everyone)! My parents are babysitting for me, we will take the children to their house shortly. The only downside is we have to watch the Panthers Football game, lol. They are honoring heroes and Dr. Bryant (the children's hematologist) asked us to be there in honor of Pete's service. She is former Navy and feels strongly our family's health woes are service related. She has taken on the task (along with the children's neurologist) of finding answers on her own time to help us. That is why your message today Caron was so poignant to me, Thank you!

I want to share some photos with you of something a special friend's daughter sent the girls. Megan and her Mom live in Seattle. (It is not my OTHER special friend from Seattle, Lynn, who always signs in here). Megan and her Mom are flying to Orlando to see Rachel play at the House of Blues. She wanted to do something for the girls all on her own. She VERY generously looked through her loved and cherished possessions and picked out a shirt for each of my daughters with our beloved Minnie on the front (and of course, our friend Mickey) . She also picked out a matching t-shirt and shirt for Lisa and her doll, Molly. Molly is Lisa's one and only American Girl doll that was given to her by my friend Sylvia for her 7th birthday. For over a year, Lisa has wanted a matching doll and girl outfit like she has seen in the AG doll catalogue...Thanks to Megan and her generosity she FINALLY has one! I will let the pictures speak for themselves and you tell ME if she was excited to finally have clothes that match. I warn you in advance, it is a LOT of pics! Also in the box were beautiful cards from Megan to each girl (now hanging on our card line) and two bars of Mickey Soap..that as Rachel said, could ONLY be obtained at a Disney Resort! THANK YOU MEGAN for parting with some cherished items and for bringing smiles to Rachel and Lisa’s faces. Your Mom has raised a truly BEAUTIFUL daughter, both inside and out!

---

Friday, September 9, 2011 4:27 AM EST

The Appointment: Was NOT a surprise. It was confirmation that Pete’s and my gut feeling was spot on. We spent 45 minutes discussing Lisa and her heart with Dr. G. He admitted because Lisa is very special to him that he wanted Lisa’s heart to be fine; and because of this he needs a fresh pair of eyes to look at the data. There have been warning signs since January; however, the changes to the ECHO makes it obvious that we MUST have a cardiac cath. to determine the pressure changes. Pete and I are STILL hoping once CHOP looks at things that they will be able to say we can wait on everything. Dr. G feels confident that we need heart pressure numbers for evaluation. These can ONLY be taken from inside the heart...the only other way is an MRI and Lisa has an artificial valve which causes artifact, rendering an MRI a moot point.

The Concern: Lisa is on coumadin and that requires its own set of concerns, especially in a child. Add to that fact that during one of Lisa’s Caths, they damaged her femoral artery on the right and it is completely occluded...the Cath can ONLY be performed on the left side. Throw in his worry that due to her past heart history and her symptoms he is afraid her coronary arteries are damaged...I am going to leave it right there, I don’t want to borrow trouble...

The Plan: A huge packet of information was sent to the local Cath Doc today. While we were discussing things, Dr. G decided that while we were very willing to let the local guy look at the data and give his opinion, he (Dr. G) had changed his mind and only wanted CHOP to look at things. The appointment with the local Cath Doc was canceled and a new letter and packet were being dictated and assembled. If all goes well, the letter will be back from dictation HOPEFULLY by Monday and the packet sent no later than Tuesday to Philly. It will take at LEAST two to three weeks (Past experience shows us this) for us to hear anything. Dr. G has assured us Lisa will be okay to wait and that going on the trip is probably the best thing we can do as we wait...He said “If ever a family deserved a MAW, it is yours”...see why I love him??? I will love him more if we have dates in place for Philly before the trip. He did say he wants our Philly trip and the results to be done before the holidays. Best case scenario, the changes will not be dangerous enough for them to operate before Lisa is large enough to get an adult mitral valve. Worst case, we will need to do something much sooner than we hoped for and our waiting for a bigger valve will have been for nothing. I honestly DO BELIEVE God’s timing is perfect and we KNOW miracles happen...just look at Lisa!

The Wish: IS ON!!!! So much to do, so little time! I KNOW I am going to have periods of sadness, I will fight to experience all of the fun and special blessings!

I asked Dr. G how many sternotomies one person could tolerate...he gave me a “I don’t believe anyone has ever asked me that” (I already knew from googling the answer is never answered)...when pressed for the most any of HIS patients have had he said five. Then seeing the look on my face he said he thought it was six... Please keep the prayers coming! We obviously need them!





Thursday, September 8, 2011 3:57 AM EST

I want to Thank each and every one of you who have left such supportive, warm messages in the guestbook this past week. I appreciate the amazing messages and love that you are leaving there to support us through this. I can't help but feel as if we have been down this path so many times before...yet we can't be complacent, we have to worry over each change...the fact remains that if we didn't have the need to change the mitral valve at some point Lisa would have already had the other surgery to correct the pulmonary stenosis...so for those who are confused as to WHY the surgery hasn't yet happened and we keep getting the same story for the past THREE years...it is because Lisa NEEDS the surgery, but the timing is crucial to not traumatize her body even more. Please imagine YOUR child needing major surgery for over 36 months and yet NOT being able to have it because each and every open heart surgery is a danger and the more you go into the chest, the worse the outcome. EXCRUCIATINGLY painful to a Mom' and Dad's heart...

Pete and I have an appointment to meet with Lisa's cardiologist today to discuss our thoughts...which are, there is NO WAY anyone but CHOP is touching Lisa...this is too important and we would NEVER forgive ourselves if something happened because we took the cheap/easy way out...so if you live near Philly...we might be coming back sooner than we hoped! The local MD they want to do the cath called Tuesday, the first day they have been in the office since our appointment Friday...if we had WANTED him to do the Cath, we would STILL be waiting to hear from them...the irony of it all....

We are moving forward with our plans to Make Lisa's Wish AMAZING! Anybody have any Disney connections? Lisa REALLY wants to spend the night in Cinderella's Castle...I was told they never let anyone sleep there anymore, just let cast members rest there between shows. Then on MONDAY I heard of a new contest to sleep in the castle...so I KNOW they are still doing it! If you want to take on the Disney machine on behalf of Lisa, please be my guest :o)

Betty, Jen, Ginger...Thank you for the info on sewing! Betty is making Rachel an outfit (I still need to get the shirt Betty, I haven't had time yet). She isn't even charging me! Rachel LOVES Mater from cars and Rachel wanted a skirt. I got 2 yards of fabric on clearance for Three dollars, throw in the zipper, hook and eye and applique and pattern and Betty's know how...NOT SURE How I didn't realize she sewed after all of these years, although I do vaguely remember she made her own drapes now that she reminded me (and they are gorgeous)!

What do we still need??? Halloween costumes for David and Christian....anybody have an adult size Jack Sparrow to loan? Or any adult male costume? How about a plus size man or woman's costume? I really want a POODLE skirt. Pete is going as a Fifties Greaser...anybody embroider? We need a T-shirt that says T-Birds on the back...We used our Disney Visa Points to get tickets to the Mickey's Not So Scary Halloween Party...it was part of Lisa's wish that we were able to make happen. I am doing all within my power to make each of her dreams come true! Any media contacts? She wants to be famous! (I have more on THAT surprise later).

I have found a place to extend our stay (FINALLY, everything was SO expensive)! We leave the morning of October 13 (BY LIMO!!! One of Lisa's wishes, but she doesn't know)! On our way to Lisa's wish of being FAMOUS IN DISNEY! We will stay at Give Kids the World until the morning of October 19, when we will have to switch accommodations (the new place is actually 15 minutes closer to Disney) and we will have to pay to extend the rental van for four nights...Lisa needs these extra days because she is unable to do back to back park days she NEEDS the rest. We will fly home sometime on the afternoon of October 23...We still need to figure out how to get Christian from High Point October 12 at 9 PM (He has a Wednesday class from 6-9..of course the first time that has ever happened in 4 years). ANY VOLUNTEERS??? Don't everybody offer at once, lol. We also need to get him BACK to HPU October 23...I don't know our flight times yet (driving me nuts waiting, I am such a planner) so I don't know what time...

As you see we have lots of stressors as always, both good and bad...The younger three have NO CLUE about Lisa's heart...we plan to keep it that way as long as possible...

THANK YOU once again for your love and support...each one of you are such a vital part of our lives and our prayer chain and I THANK GOD for you!

---

Saturday, September 3, 2011 3:12 PM EST

I realize I have not been updating as much as usual...I also know exactly who still comes by to check on us and I Thank you!

So much has happened since I updated. David spent a weekend at Victory Junction for young adults, Christian went back to college for his senior year, Lisa got her cast off this week. We had multiple MD appointments this week. I had my eyes examined, now I can't afford the gasses...hard to be old and need such a complicated script. Lisa's INR level is too high and David is getting his IV iron am a more regular basis. We have been trying to get everything in place for our Make a Wish trip. Anybody sew and want to make me something? How about applique?...let me know pleases and what you charge. Now for the news that has been weighing heavily on my heart...it is in reference to Lisa's cardiology appointment yesterday.

Without going into too much technical detail, Lisa’s ECHO showed a marked change from late May. Most of you know the back story; however, let me refresh you, in case you don't remember our health history as clearly as me. Lisa has a mitral valve implant we know needs to be changed out as she grows, preferably when she is in her teens. To complicate matters, she has pulmonary stenosis as a direct result of her first open heart surgery that has needed repair for several years. If she didn’t require the mitral valve replacement, it would have been done this past December. The numbers Fridday showed we don’t have a lot of time left. Lisa’s medical heart care is managed here in Charlotte, the surgical component is led by the incredible doctors at CHOP in Pennsylvania. Condensing a long story here and biting my tongue to not be disparaging, but in 2008 our Charlotte doc convinced us that Lisa’s needed cardiac cath could be done at Duke hospital. This is usually performed as an outpatient procedure; however, due to Lisa’s need for coumadin, she has to be weaned off to heparin, procedure done and then weaned back on to coumadin...it took nine long days at Duke. They told us back then at Duke that if she didn’t have immediate surgery she would have a cardiac arrest and die...and by the way, Merry Christmas. Philly took a look at their results and determined they injected her heart with a medication that had not been used since the early nineteen seventies and there was NO WAY to interpret the data they had provided. Pete and I vowed to NEVER let anyone touch Lisa’s heart invasively, other than her CHOP docs, ever again. The surgery was NOT performed at that time and that was a blessing. Fast Forward to Friday. Lisa’s Mitral Valve mean gradient has worsened and her pulmonary stenosis was markedly worse...by 15 points since May. Per Dr. G, she only has a 13 point spread when we will HAVE to fix the pulmonary stenosis, even if she isn’t big enough to get the adult mitral valve...and I asked him if she was close to the size where her body could handle an adult size and he said quite emphatically NO. He wants us to let a new doc in town (he was trained at CHOP actually) possibly do the cardiac cath. That really threw me, as much as I would LOVE to not have to travel back to Philly (we made the trip in November/December 2010...the first time we had to postpone Lisa’s MAW trip) I do not trust anyone else, past experience has proven we can’t. Dr. G and I had a long talk today about how great the new doc here is...and how the hospital/nurses.lab/staff were hit or miss...the problem is you can have a great cath experience; however, because we have to be inpatient with Lisa for so long, things typically do not go well for her recovery. Dr. G wants us to meet with the Cath doc in the next 3 to 4 weeks and see what he has to say, needless to say, that sent my head spinning and I am still reeling. I have had time to calm down and think about things from all angles and Pete and I have reminded ourselves what it was like to feel that incompetent people were in charge of treating our daughter. I think we both feel no matter what, we MUST go back to Philly for this cath...and start with a good evaluation and ECHO. Per Dr. G, it is not an emergency yet, we don’t have to do it tomorrow...but we need to have it done within the next few months...then the truly hard choices might have to be made. Dr. G said we COULD go on the MAW trip and we should plan to have the time of our lives...That will be easier said than done. I do not like having this hanging over us. This news was NOT good, it is wearing on my heart. I know God is in control and Lisa WILL be okay, she is the toughest person I know. I just wish she didn’t have to be. I hope this makes sense, I am physically not well over al of this....I do not know what we are going to do yet. We may meet with the local doctor just to get a feel for him; however, Pete and I both feel this is not the solution. We are trying to remain calm. It was 2008, and then again 2010 both around this time of year when they sent us in to a tizzy about her heart. Praying they are wrong and we can wait just a bit longer for her surgeries. I feel certain that we will be going to CHOP. As much as I don't want to ...at least they will be able to interpret there own data and if something went wrong in the Cath Lab (My huge fear LAST time at Duke) at least we will have the best on standby...I KNOW you will continue to pray, I am simply drained from it all...

---

Sunday, August 28, 2011 3:49 AM EST

Prayers going out to all of our Family and Friends in harms way of this destructive hurricane. Lisa, Pam Lynn, no worries, we are all FINE in Charlotte! THANK YOU for letting me know you are still reading. I will update soon, a lot has happened...but I will forget to tell you most of it, I am certain!

---

Saturday, August 13, 2011 10:43 AM EST

You know this can’t be good when I start a post off with the words our pediatrician said to me yesterday “Your life is more interesting than any soap opera”. She wasn’t trying to be rude, it just sometimes seems incredulous...even to me...I was not amused...

Quick backstory, otherwise we will be here all day and I don’t want to bore/confuse you: 45 minutes before we were leaving for the airport Sunday, the four younger cousins wanted to go out and play at Meemaw’s. I should have listened to my gut...within 15 minutes, Lisa had slipped and fallen and was having pain in her thumb. I put ice on it as she rested on the couch and gave her tylenol (she can’t take anti-inflammatories, due to her coumadin). After 10 or so minutes, she was she was okay and played for the last 15 minutes before we had to leave for the airport. The rest of the night she seemed fine and on Monday I asked her how her thumb was, she said fine and that was the end of it (In spite of everything, I do not hover over these children, I let them live). This has been another doozy of a week, crammed FULL to the brim...Again, I will not bore you...

Fast Forward to Thursday night. Long story short, when I was filling out paper work for Lisa's PT appt (appt was at 8 AM Friday morning for evaluation of her NEW musculosleletal problems) when I asked her if she had pain she said, yes, I asked her where (she NEVER complains about anything) and she said in her thumb. I was shocked, it was from Sunday when she fell at Meemaw’s house. I took a good look at her thumb and knew we would be adding another MD appointment to the day. She also woke up in the middle of the night with a severe headache, chest pain and vomiting (but didn't wake me up, she didn’t want to disturb me! She is the toughest person I know, although I told her AGAIN she HAD to let me know when she wasn’t feeling well...and some people whine over the littlest of things...). I took her to the pediatrician and she put her on antibiotics, she thinks she has strep brewing (Lisa gets strep quickly if she is even in the room with someone that has it and it is horrible for her mitral valve implant). The doc thought her thumb was fine. I got a call a little before two (I had just brought Rachel home from Junior Dog Handler’s camp), the radiologist didn't like how things looked and wanted her to see an Orthopedic doctor ASAP (Lisa’s Ortho blew us off until MONDAY! It was the weekend after all)! After keeping me on hold thirty minutes, the Peds office FINALLY found someone to see her...she has a broken thumb and is in a thumb spica cast until at least August 30....can you believe it?

Here are a few pics, Lisa is always the Model, no matter what is going on...also notice super therapy dog, Bandit...he knows how to provide comfort...

I could go on, but I will not...I will share the insensitive comments of the Tech who put on the cast another time (maybe).

The A/C IS fixed...it was an electrical problem, they tightened a switch too much and cracked it. I have some stories from the BWI airport...lets just say our flight home was more...interesting...and was less smooth than the ride TO Maryland! I actually took Lisa’s cup through security with over 12 ounces of liquid and not ONE person said a word to my delight...and concern...but her c-pap machine...they must have those on the do not fly list...her fan strapped to the wheelchair (we forgot it was there), passed security in Charlotte and Baltimore...it is about 6 inches long, 2inches deep and 3 inches wide...not a word about it! (which after the fact I was glad of, I have NO idea where I would have put it, had it been a problem)!

Disney World and Give Kids the World...Here we come in TWO MONTHS!!!! I have SO much to do, so LITTLE time!!!!

---

Monday, August 8, 2011 5:31 AM EST

Hello sweet friends, we ARE back home. Our plane was late in getting in last night, so we didn't arrive to our house until shortly after 11 PM...to discover the A/C unit upstairs NOT WORKING! Yes, the BRAND NEW A/C that cost us $12,000 upstairs and down is NOT working! The temp is reading 94 degrees upstairs...Rachel began coughing as soon as she tried to go up to change into her night clothes (she has asthma), she and Lisa slept downstairs. I am NOT happy! Christian had called them when he got home at 8:30 (he called me first, we were just loading the plane which was supposed to have left at 8:11 PM).They never called him back so when we got home, I was calling everybody on the A/C list, waking them up...it is SUPPOSED to be 24 hour service...I will address that today as well...plus we have MD appointments, no surprise there.

My MIL is a strong lady and has many activities to keep her busy... but there will be hard times ahead, we will continue to have them as well. She has PROMISED us she is coming to our house for Christmas!!!! We are incredibly excited!!! When we broached the subject, she had already decided she thought that this would be a good year for a change of scenery at the holidays...and we agree! We have something extra special to look forward to after the Wish Trip! It is a win-Win for all of us!

I need to hop in the shower to cool off, these A/C people should be calling me soon, I hope. Thank you all once again for the very kind words of support!

---

Wednesday, August 3, 2011 4:09 AM EST

HAPPY 21ST BIRTHDAY CHRISTIAN!!!!! I can't believe that you are 21...how could this be??? I am only twenty myself! Today will not be the celebration we had planned to mark such an auspicious occasion; however, you have been most gracious and understanding as always. You are loved beyond measure and I know that your Pumpaw is smiling down at us, with pride in his heart for such a wonderful first Grandson! Happy Birthday sweetheart!

As you all know, Pete's Dad died unexpectedly last Friday. He loved us dearly and wanted to spare us the pain of seeing him that way, it was always hard for him to see others at death's door. I am glad his wishes were honored/met, I only wish we could have told him how much we loved him one more time. We didn't get to say good-bye, which hurts. I do know he is happy and at peace, I am just stunned at how quickly it all came to pass. He was ready to go home to the Lord and that was it. We have comfort in knowing that even if we had packed up and left in the middle of the night driving (there were NO flights until Friday night, everything was booked. The air lines even gave away 3 free round trip tickets to anyone who would be bumped because they were overbooked) we would never have made it in time to say goodbye. Those truly were his wishes, he simply wanted to go to sleep and wake up in heaven. I am certain he did.

The screening was nerve wracking at the airport due to one TSA agent. The OTHER TSA agents told me he was a "poop". They were right. He made the biggest fuss over the c-pap machine. We did get everything back together and made it to our gate with PLENTY of time to spare. EVERYONE else we encountered that night, from the reservationist, other TSA agents, restaurant employees, flight attendants, rental car agent...were ALL so kind!

Pete is heartbroken of course, putting on a brave face for all of us. Christian and David have been incredibly strong, but you can see the pain in their eyes. They have been so comforting to us. We told the girls, as we waited for them to sort out our van at the airport...they tried to give us a 15 passenger van...NO THANK YOU! The kindest agent asked me what kind of van I had at home and she made sure they brought us the same make and model "because she KNEW we could get all of the medical equipment in that model". Rachel and Lisa were heartbroken as well. I expected Rachel to cry, I was NOT prepared for the sobs that came from Lisa. They are both hurting...we all are. Both girls cried off and on as we all have. I heard Lisa tell one of her cousins that if my in-laws still had their old house, Pumpaw wouldn't have left. (My in-laws sold the old homestead several months ago and moved into a 55 and over complex...which truly IS wonderful! Mom has her own house, which has met all of our needs this week).

My MIL is joyful. She loved my FIL very much and they had a great life. She will miss him forever; however, she is also at peace, knowing he is with our Heavenly Father!

On a lighter note the actual plane ride was fun (the girls didn't yet know about Pumpaw and they were sitting with me. We managed to procure seats in sets of three so the guys were together and the girls were together). Rachel did NOT like the sensation of flying, it was horrible on her sensory issues...Lisa LOVED it!!! She was full of happiness and could not stop giggling...and I didn't try to stop her! To my delight, the other passengers reveled in the fact Lisa was enjoying the flight. Christian has flown several times in the past few years (for a school trip and most recently when he flew back to college this year after Thanksgiving. Pete and Lisa had MD appointments in Pennsylvania and Christian's holiday break was over). He was quite comfortable. David was THRILLED, he does love the rush! I could see him wanting to be a pilot, he is very hands on, as you all have read.

We truly were blessed with the most KINDEST of people...with the exception of the one they called...."the poop". I think it was a fluke, because I have read airport horror stories; however, for the first time EVER it felt as if Lisa being in a wheelchair was a perk! God certainly softened hearts at the airport.

There was not a funeral, that was one of Dad's wishes. Thursday there will be a memorial service and a Christian mass to honor and remember Dad's life. Mom and Pete reserved a banquet room at a local hotel and we will celebrate Dad's life with friends and relatives from 1 until 4, then we will come back here for those who want to see Mom's new place.

Christian is flying back in on Friday AM. He has a friend that will pick him up. They had big plans for Christian's birthday this weekend, so they will keep those and I am happy for Christian! Pete, David, Rachel, Lisa and I will not get back in until very late Sunday night. Pete's Mom needs a helping hand with a few things around here and Pete and I, as well as the children, have been happy to be able to give her an assist for a change.

Thank you all for the kind words and the expressions of sympathy. It means a lot to me.

---

Friday, July 29, 2011 11:56 AM EST

Pete's Dad died at 9:30 this morning. I am heartbroken. We will always love and miss you Pumpaw.



Friday, July 29, 2011 12:56 AM EST

Pete's Dad is quite ill. We are flying to Maryland tonight. PLEASE PRAY!!!



Thursday, July 28, 2011 1:34 AM EST

I had a root canal today that is proving to be a lot worse than the other one I had, so this update will be short.

My Father-in-Law is back in the hospital and there are more questions than answers. PLEASE keep him in your prayers! Please keep my Mom-in-Law in prayer as well, it isn't easy to have a loved one in the hospital, as most of us know!

A HUGE THANK YOU to everyone who commented on our exceptionally exciting news about Rachel!



Monday, July 25, 2011 1:40 AM EST

If you missed pictures of David's most AMAZING cabinet, please click on the journal history to view his hard work...it is truly incredible that he turned four pieces of wood into that!

The girls have theater camp this week...if they have half as much fun as Rachel had at Jazz camp last week...it is going to be a happy week for everyone! It will still be a busy week, There is a LOT to do and I have to figure out a few things...but enough about that, without further ado, I have a HUGE announcement to make!

This has NOTHING to do with Lisa's Wish trip, other than the fact that is when we will be in Florida. Rachel is always wanting me to help her get some "gigs"...what do I know about gigs, I am just a Mom who works hard and has no spare time. But Rachel DOES have extraordinary talent and deserves to be heard.

I had seen an episode of Extreme Makeover, Home Edition several years ago, where the family was allowed to sing at the Sunday Gospel Brunch at HOB. I remembered this vividly and always thought how cool it would be for Rachel if she could do that. Therefore, when I found out we were going to Florida, I emailed House of Blues (HOB) several times to find out if Rachel could play a song at Gospel Sunday; however, I never heard back from them. I finally told the family about what I had tried to do the day after Rachel played at the McGlohon Theater. Christian decided to contact the HOB directly and spoke to a manager, who said he had nothing to do with the entertainment. He stressed to Christian they rarely let anyone "unknown" play and she would have to be very good for them to even consider it. Christian convinced him she WAS good, so he gave Christian phone numbers for their agents who do the booking and their talent division. I left messages at all of the numbers and heard back from an assistant. She said they would have to hear Rachel play before they would even consider it. She stressed I should not get my hopes up, it was very rare they allowed someone "off the street" to play. They would have to be exceptionally talented. Thankfully, I had the video from when Rachel played at the McGlohon Theater June 4. I had to email them our dates of when we would be in Florida, as well as a link to the video, which is here.
http://www.youtube.com/watch?v=TO7BVuVkNDY Within hours of me sending it, they had listened to it and were blown away! I had been sent it to their VP of Concerts, who sent it to their Southeast Concert Promoter. I was contacted back quickly. During the time we are in Florida they already had events confirmed on the main stage. However, they want Rachel to play on the stage in the 600 seat restaurant (plus standing room only spots). When Christian and I asked, we had hoped for one song...this is what they have asked Rachel to do, copied directly from an email the Southeast Concert promoter's assistant sent to me:

We have blues bands perform there (the restaurant) on Friday and Saturday nights. It gets pretty packed in the restaurant.
We would like for Rachel to perform a 30 minute set before the blues band loads in on Friday, October 14!!!! How does that sound?

How does it sound??...ARE YOU KIDDING???? It sounds AMAZING!!!!!

That means Rachel WILL be playing the House of Blues at 8 PM that night! A THIRTY MINUTE SET!!! All of her musician friends, including her instructors are blown away! HOB will provide her equipment, even guitars! They have consulted her to find out how much time she needs to warmup, how much time she needs for sound checks, what type of lighting does she want (can we say I am just a little in over my head and winging it, lol). Pete is going to accompany her, playing rhythm guitar. This is a pretty big deal! It certainly fulfills a MAJOR dream for Rachel! I am so excited I am about to explode! The Community School of the Arts is so incredibly proud of Rachel as well. They asked Rachel and Lenny (her instructor) to play at their last board meeting (they only rehearsed twice). That video is here http://www.youtube.com/watch?v=1rxhA9HsU4Y and shows Aram announcing Rachel is playing at the HOB! The board members were all sufficiently impressed. The only people who have NOT been excited for her are those who don't know what HOB is.

And this is a video of Rachel playing for Piedmont Natural Gas: http://www.youtube.com/watch?v=FBlY6dym0Kc


I want to stress, this has NOTHING to do with Lisa's MAKE a WISH! They gave Rachel the gig on her own merit and it just so happens that is the only time we will be in Florida.

Please let me know if any of the links will not work.

Rachel is ROCKIN' THE HOUSE OF BLUES...LIVE!!!! In Orlando!!!! OCTOBER 14 at 8 PM....
it is a NOT TO BE MISSED event!

---

Friday, July 22, 2011 3:52 AM EST

David saw the oral surgeon for a follow-up yesterday and he was very pleased with David' progress and how well David is caring for his teeth/surgical site. David still has some pain/swelling; however, no more than expected.

Christian is continuing to give me a helping hand around here, I will miss that help when school starts back next month...but I will miss HIM more!

Rachel has enjoyed Jazz Camp this week, their big concert is tonight. It is free if anyone wants to come, just give me a call for directions. It starts at 6:30.

Lisa's INR was much too low on Wednesday at the hematologist. Medications have been adjusted and we will recheck to see if that has helped. She didn't have pain Tuesday during dance class (like she did last week); however, 40 minutes in she had to lie down, she was cold and clammy again...she did join back in the last 7 minutes of class. Her instructor for the summer (new to us) told me she was so impressed with how hard Lisa works and her technique. Per the instructor "Lisa has a natural grace and ability not typically seen in a child so young". She can't believe this was Lisa's first year of dance.

I wanted to share the photos of David's latest woodworking project. He has been finished with this about a month, I was finally able to take photos. These were taken Wednesday, you can see his cheeks are still swollen. David gave this cabinet to me for Mother's Day. He was so sad he didn't have it completed by the actual date...I wasn't, I knew it was coming! I LOVE IT and am impressed with his skill. These photos do NOT do the cabinet justice, it is a BEAUTY! It is hard to believe that this was made from 4 pieces of board....

---

Sunday, July 17, 2011 3:11 AM EST

I am happy and relieved to say David's surgery went well. Today is the third day and they told me this could be the hardest day for him so please pray with me that is not the case. He has been a trooper, following all of his aftercare instructions. He HAS wanted me around more than typical, which is great with me. As for my tooth, this early AM I am fairly certain I will need a root canal...why not, this past month has drained us dry financially (yet again). The A/C repair on the Van was even more than anticipated $1,023. I actually have some fun news to share; however, I don't want to do it on a day when I sound like a gloomy Gus. After all, we are all struggling financially. I just Thank the Good Lord that I have my children, so many of our friends would take money owed over their woes, I NEVER forget that. It IS only money. Sorry for venting, my tooth is bothering me.

The summer is winding down, I wish it would slow down. As much as I am looking forward to Lisa's Make a Wish trip, I have a massive amount of things to accomplish and I am not ready for Christian to return to school (although I know he is :o) Thanks for your faithfulness and for always praying for us.



Friday, July 15, 2011 2:18 AM EST

Please say a prayer for David, he is having his wisdom teeth out today. There are no "simple surgeries" when it comes to your child and anesthesia.He had his IV iron on Wednesday and for the FIRST time since he started needing the infusions 4 years ago, the MD wants to begin giving them on a schedule to help prevent him from riding the roller-coasters of highs and lows that occur in response to his ferritin level dropping...imagine that, it only took four years...she was worried about how exhausted and tired he was on Wednesday...sometimes I just don't understand the logic behind the medical choices that are made...

Rachel did an amazing job at Piedmont Natural Gas on Wednesday. They had limited her to a 2 minute song and in those two minutes she captivated everyone. I have more news to share about her later.

Christian is continuing to give me a lot of help this week as I go off in too many different directions. Thank you sweetie.

Lisa is not well, although she does her best not to let things slow her down for too long. She needs frequent rest periods in between her fun. I have her Orthopedic appointment moved up to the end of July (MD on vacation before then) and her PT eval for the lordosis/scoliosis/ leg weakness moved to the first week of August (PT will be on vacation before then...summer is hard for therapy and MD visits because everyone takes vacation...).

The van's A/C compressor needs replacing and a few other things...It has been in the shop since Wednesday. Even using aftermarket parts it is supposed to cost us $900...it just never ends...It is a good thing God loves me so much, because the devil has been working overtime again...I am so Blessed God is protecting us!!!

For the LORD your God is the one who goes with you to fight for you against your enemies to give you victory. ~Deuteronomy 20:4

---

Wednesday, July 13, 2011 2:34 AM EST

Lisa came out of ballet class early yesterday almost in tears. She had been “trying to get my attention”, but I was talking to a lady...for all of about three minutes when Lisa showed up. She said her feet hurt. I picked her up and held her and realized she was cold, clammy and sweating Her heart rate was 120 beats a minute (she is usually bradycardic). I took her in the bathroom and placed cool towels on her neck, wrists and face. I took her back out to the waiting area and once she felt better we left. I had all of the children with me. Christian had gone to stay with Lisa while I picked David up from the Aviation Museum where he is interning. We went to Rachel’s guitar lesson and waited for Pete to show up to attend the lesson with her, and I took everyone else back home. It was HOT!

Lisa was feeling better by the time Pete showed up, still not her best and we embarked for home. As we were driving I heard the car A/C make a very imperceptible noise and the next thing I knew hot air began to flood the car...we had NO COLD AIR and a VERY long ride home in 5 o’clock traffic! It actually felt as if I had turned the heater on in the car, the air was so hot blowing out. The thermometer in the van was registering 108 degrees...and Lisa was not well. We were ALL miserable! I was exceptionally concerned for Lisa though.

We got home and into the BLESSED cold air from our new units, Praise God and after a little resting/cooling off, Lisa felt much better. I served Christian, David and Lisa dinner and began the process of retrieving the messages off of the machine...one problem after another. The biggest is the refrigerator (that our angels helped us get) to replace our leaking one has been delayed...we should have it by the end of the month...it was to have arrived today, I was SO looking forward to it! The other not great message was that the Aviation Camp David was going to attend at JAARS had been canceled. David already missed out on Victory Junction this year, due to lack of staff and funding, now he misses this opportunity as well...it is very disappointing. This news was on top of the not great news we received at Rachel’s MD appointment earlier in the day, which I will not discuss, in deference to Rachel’s wishes.

In addition, poor Christian was not one of the finalists for the scholarship he worked so hard on. He was INCREDIBLY disappointed. I felt horrible for him. If you would like to watch it, here is the YOUTUBE link... Click to watch Christian's Video. I thought it was clever, it is a less than 30 second PSA on safe driving. As if THAT weren’t enough tough news for him to swallow for one day, he received a letter in the mail that stated the NC Legislative tuition grant had been drastically reduced from what was originally promised in April...ENOUGH already!

The end to a perfect day came when I found David in the bathroom, trying to rinse out his eye. He thinks an eyelash got into it and he had been trying to rinse it out for about 90 minutes, because he was in massive pain. He “didn’t want to bother us”. Pete and I looked at it closely; however, could not see anything (it was red and bloodshot by this point) and at that hour of the night, there was nothing to do but put some lubricating drops in them and put him to bed. I am praying he is better when he gets up because my day is packed, as is Pete’s. We are trading vehicles because of the air problem in my van and Lisa can’t take the heat...it literally is NOT possible for her.

Our Wednesday plan: Pete will take my van to Toyota and PRAY they can repair the A/C cheaply TODAY and catch a ride to work on the shuttle. The highlight of our day will happen bright and early. Rachel has been invited to the Piedmont Natural Gas monthly meeting to play for 100 to 150 employees (They sponsor the Jazz Camp through CSA that Rachel LOVES)!! We have to be there at 7:45 AM and it is a 45 minute drive one way. She is going to be asked a few questions and play the song “Moondance” by Van Morrison. Lenny, her amazing instructor, will also play with her (Yea)!! If Lenny had been unable to join us, Pete was going to step in to accompany Rachel. God worked out the details, Lenny is able to be there and Pete can take the van. Rachel is excited, she would perform everyday, given the opportunity. Then we have to dash back home and pick up David and Lisa for their hematology appointments. It will be a long appointment, David needs his IV iron. Then it is back home, where Christian will babysit for me, as I take David to the Oral surgeon. (Christian has been an INCREDIBLE help this summer, I couldn’t have done it without him)! If the surgeon agrees with the dentist, David will have his wisdom teeth out on this Friday...now PLEASE agree with me in prayer that David wakes up with his eye healed, I do NOT have time to squeeze in anything else! Plus we have to get Pete back home and possibly pick up my van, if they keep it. As if that weren’t enough fun for one day, the A/C salesman is supposed to come over tonight and review things with us about the new A/C units and ensure we are “happy”. I tell you what would make me happy...a few less problems to deal with!

---

Saturday, July 9, 2011 1:06 PM EST

If you missed any of Friday's exciting update, please click on Journal History. I finally ate some soup just before bed for the first time since Wednesday. The appointment Friday wasn't as bad as Thursday; however, I am in considerable discomfort and expect to be until August 2, or so they tell me. (Danette, the crown will not be ready until August 1 and the dentist is not in that day). David worked at the Aviation Museum Friday and that went well. I had to go to Lisa's MD office to pick up specimen cups, her urinalysis Thursday showed her urine wasn't concentrated enough and they want to get a first voided morning urine to ensure she isn't having any kidney problems.Please Pray! No news on moving the MD appointment for Ortho to check her back and leg. Christian babysat the girls for me while I was at the dentist, what a sweetheart! Rachel was beginning to get sick while I was gone and it was full blown shortly after I returned home. Thankfully she felt better by dinner time.

Happy Birthday to my Dad-in-law! They are celebrating with a big family party today hosted by my dear sis-in-law. (His birthday is Sunday, My Mom's is Monday). I wish we could be there to join in the fun, it should be a great time of celebration.

I had hoped to have pictures they took from the reveal day to post; alas, I only have the ones the Wish Granters took with my camera...and I am thankful for these, Pete was manning the video camera. I hope you enjoy. The last picture of the entire family was taken in the lobby after the reveal...we are all very excited, as you can see...I have NO idea why some of the photos are bigger than the others, they were exported the EXACT same way.

---

Friday, July 8, 2011 4:05 AM EST

I am not feeling very well tonight, Lisa had two MD appts. Thursday and I was in the dental chair from 2 until 4:30...I have to go back today at 10:30. I have a tooth that has been filled three separate times since 2005. It sits inappropriately in my mouth at about a 45 degree angle, which caused my problems to begin with. Braces aren't just for cosmetic reasons, they are necessary for the health of your teeth. Wednesday, my X-rays showed the filling was loose (it was NOT that way last year when they took X-rays and they only take X-rays once a year). As he was removing the filling in preparation for the crown, he had to go very close to the root...they have placed a medicine on my gum (which they cut a chunk out of, because the tooth's angle made it necessary in order to place the crown). Lets just say I am in some discomfort that is radiating up to my right eye. He is trying to prevent me from having a root canal, which I am all for I don't have the extra money to pay for it, nor the time. I have quite a few appts. I need to get scheduled for both David and lisa, so PLEASE agree with me in prayer that this too shall pass quickly. He warned me I may be in pain until I get the permanent crown, due to the gum irritation. I will not have that new crown until August 4. Good times! Rachel wanted to go with me, to "rub my feet" like I d for her when she doesn't feel well. I didn't let her rub feet, but I did enjoy her rubbing my leg and holding my hand. What a sweetheart. It actually hurts to sit up for too long, so this WILL be short, I just need prayer.

Happy news: Lisa's INR (coumadin level) was directly in the middle of normal, that has been a long time coming! Not great news, her scoliosis has gotten worse and she HAS developed lordosis, as I feared. Dr. S wants her to be seen ASAP by her Ortho, instead of waiting for her September appointment. We also need to ramp up her physical therapy and probably need a new leg brace and shoe lift. DR. S thought the leg length discrepancy had increased, but I am not going to get too excited about that, it DOES fluctuate.

David news: He is working at the Aviation Museum again today...he LOVES it! I will drop him off on my way to the dentist.

Funny news: Rachel and I were discussing the merits of a hot shower yesterday morning as she ate her breakfast, when a distraught looking Christian came in to the kitchen and went out to the garage. Seems we had NO water and he thought the hot water heater had busted.I called the water company and discovered, thankfully that it was a water main break on the street that intersects ours. I was HUGELY relieved that it wasn't just at our house! Fifteen minutes later as Lisa and I headed to the first appointment, I saw a huge work crew with three bulldozers and back hoe working fervently.

Please keep the prayers coming!

---

Sunday, July 3, 2011 9:45 PM EST

I went into the garage this AM at 5:45 and discovered that the water heater was leaking (no kidding)....I sent out an urgent request for ANYONE who knew a plumber...Quite a few folks responded, surprisingly (It IS a holiday weekend). I am happy to say that the water heater is replaced! It was 21 years old and we are so blessed that the mess wasn't any worse. It looked as if God had said flow this way and once it got past the garage doors a huge flood opened up! We have "new neighbors" who bought the house next door about 18 months ago. They have been unsuccessful finding jobs in our area, so they have been doing repairs, coming to town about once every three months. I have been watching the house, gathering the mail, cutting the front yard, putting out the trash for them after they have been here...just little things that gave them a measure of comfort to know someone was watching their property. We have let them borrow our water, electricity, and taken them cool drinks on hot days...just being good neighbors. Imagine my surprise to find out that Dennis has installed hundreds of water heaters...it used to be his job before he became a HVAC repairman! They came in to town for the holiday weekend and to do some repairs on the house. When he saw us outside trying to clean up some more of the water while he was cutting tree limbs to place at the street. He asked us what was wrong and stopped to help US! So He and Pete went to Home Depot to buy a hot water heater and the plumbing equipment that was needed and Christian and David finished cutting the tree limbs for Dennis from the trees and sawing them down to small sizes that the city would pick up and placing them on the curb. Unfortunately, He and Pete had to go back FOUR times...but finally, after 8 hours of work and switching from a gas water heater to electric it is fixed. We gave him $100 for his time, which was a bargain, I must say and he didn't want that...and the parts were $625. $725 was MUCH Cheaper than a Sunday, holiday weekend emergency call would have been anywhere else!

May you have a BLESSED fourth of July!

---

Thursday, June 23, 2011 7:30 PM EST

I have teased you long enough about the video. I ask you to do me a favor. If you watch the video PLEASE take a moment to sign in and let me know you enjoyed it! I would love to have some of the lurkers let me know you are here, as well as our faithful friends. It truly IS magical and shows there are many good people in this world...and we ALL LOVE DISNEY!!!

This is the LINK to the most AMAZING MAKE A WISH REVEAL. I cry happy tears every time I watch it.

Below is an explanation of what happened:

Lisa, Beast and Belle, OH MY:
I have to share the Make a Wish reveal on June 5 was SPECTACULAR! It could not have been more exciting and Lisa was precious! The wish granters were there, as was the special events coordinator from MAW and she was so cordial and warm and fuzzy! My Lisa loves hugs and Jenn gave her several, which made Lisa happy. We watched the dance studio give out their awards, then they performed a fabulous opening number. The studio owner walked back on stage and said she forgot to mention one more charity that they supported over the past year and it was MAW. As she spoke, you could hear the slight sounds of Beauty and the Beast begin to play over the speakers and then out danced BELLE....with the BEAST!!!!! Lisa was so excited she was jumping up and down in her seat. The Director asked them why they were at the show and Belle said there was a very special little girl in the audience with her mom, Judy. They couldn't find her, did anyone know where she was...I didn't know what to do, so I stood up and said, here she is...then they trained a spotlight on Lisa and she stood up. I looked down at Rachel (remember, only Pete and the boys knew about this) and Rachel's mouth was hanging open. Belle invited Lisa and I up on stage and we climbed up the stairs and Belle met us. She took Lisa's hands and took her to the middle of the stage and took the crown off her head and placed it on Lisa's. Then they began to dance...and out walked the Beast, who bowed before her and gave her a single rose...then HE danced with her! Both danced briefly, but it was MAGICAL!!!! Next they took her over and told her she had been given her wish to go to Disney World and she was literally quivering!!! They gave her a big "ticket" to Disney World and a beautifully decorated bag full of goodies (that she didn't get to open until midnight that night due to our troubles). It had a little wand, bracelets, stickers, lip gloss, a flower hair clip...she was thrilled with it all and through the evening I would ask her about what she was thinking and she would say different things from the actual reveal...the next morning she asked me if she had dreamed it. I was bawling like a baby up on that stage and after they gave her the ticket I came over and hugged the director's neck. THEN they led us off the stage and took us to the back to meet Belle, the Beast and Cinderella who was on standby. (The dance studio adopted two wishes and had revealed the day before to a little girl who was too shy to do anything more than take her gift bag and go back to her seat. They used Cinderella as the back up to help fill the time...Lisa was happy to fill the time while she was on stage)! Back stage they visited with us, then took PHOTOS (I can't WAIT to get them)!!! Someone had gone to the lobby and bought her a huge bouquet of flowers they were selling (There were over 2,200 people at the performance, I was blown away)! EVERYONE was congratulating her! Then they let us watch some of the performance from backstage. They actually came looking for us we were gone so long, but Lisa was loving it all! Pete DID video tape it which I FINALLY got to see last night...it made me cry all over again. When we get things straight here, I will put it on youtube so you can all see the magic. I do not think anything could top this day! It was MAGICAL!!!! Lisa still gets dreamy eyed when she thinks about it! Every time I took her to the bathroom or we passed someone they asked how long she had practiced her dance (they were surprised she didn't know about it until she was on stage). SO MANY PEOPLE congratulated her and I couldn't say Thank you enough...each person in the audience had a hand in raising money to sponsor these wishes for these two little girls)!

If this doesn't bring smiles to your face or a few tears, I don't know what will. I will NEVER forget this as long as I live, it was magical and AMAZING!

Rachel played for the Community School of the Arts Board of Directors today, it was wonderful. Then Christian very kindly took his sisters to have some fun at Discovery Place, while I took David to his training session at the Aviation Museum. Christian has also completed a video he made competing for a scholarship from the Driver's Edge. PLEASE say a prayer he wins!!! It is very good, I will post it for your viewing pleasure later. Christian worked VERY hard on it. He had to first learn how to make the movie with a variety of software, then make the video. The premise is GREAT!

We still are without air, we have received a multitude of quotes...waiting to see if the company we like will price match. There is a local company called Love, Inc that MIGHT be able to get us another window unit. I completed the Paperwork, I am hoping we will get it. While it will not help with Rachel's asthma or Lisa's allergies, at least it might be cool, we are suffering.

Enough bad stuff...ENJOY the video!

---

Sunday, June 19, 2011 4:29 AM EST

If you missed the Story of Lisa making her WISH click on the Journal History and read all about it. I have a SUPER INCREDIBLE VIDEO to share about her Make a Wish Later this week...you WILL need your tissues! Kristin, Genna's Wish Trip sounds AMAZING!!! I am so excited for us all !

First and Foremost...Happy Father's Day to all the Dads out there, especially to my Husband, Pete, My Dad and my Dad-in-law! I hope today is full of family and love! Rachel is singing with the tour choir this morning, then we are going to have a bite to eat and head over to my parents for a visit. I will come home and cook a most delicious dinner for our family and we are planing on a movie night. This is how Pete wants to spend his day and it sounds great to me :o)

We have come to the realization that we HAVE NO CHOICE except to replace the Air Conditioner and the Furnace on BOTH levels of the house to the tune of around $12,000...all four of our units are Irreparable...and they have served us well, as 7 different HVAC people have told us...Twenty One years is a blessing. Temperatures are expected to soar into the triple digits by Tuesday and we MUST have air. At Rachel's MD appointment on Friday the doctor told me her chest/lungs didn't sound good and we had to do breathing treatments, labs and change her inhalers/nebulizers around. Lisa is MUCH more tired than usual and her allergies are giving her a hard time. We did buy a portable A/C for the girls room last week; however, as the MD said, that is NOT sufficient to help with asthma, allergies, heart, lung, autonomic issues, etc. for the children.

We have explored every option for someone to help us and followed every lead...there ISN'T anyone! EVERYONE keeps asking me why the elusive "THEY" won't help us...surely THEY will help you because of your massive medical bills...PLEASE, tell me who THEY are???? Even the doctor thought the insurance would help us, since this was medically necessary...when I called them Friday, the insurance lady nearly fell out of her chair laughing, and NO, I am NOT joking. So many want to help us, they are just as financially drained as we are. I am going to try and have another yard sale. If I have anything you want to buy, please let me know. I wish I had a building to set it all up in, so that I could work on getting everything together, it is hard to assemble it all and store it as you try to assemble more...plus now I have everything out of the attic so they can install the new units, once we decide who we are going with, we are still waiting on estimates.

The heat isn't helping Pete's health either. Add to this Pete's lab levels are completely WRONG and he isn't well...He had his phone consult Thursday (delayed by a day due to the MD having an emergency). One medication has been stopped for a week and will resume at a lower dose next week and the doctor ordered a different medication, but it is mail order and will not be here until later next week as well. I hope it works, not only for his sake, but mine and the children's as well. He gets all of the sympathy/support...BELIEVE ME, we need it too!

Christian has his sleep study Monday night and will have the day/nap study on Tuesday. I am sure he is looking forward to a little peace and quiet and air conditioning...I know I would be! Even putting up with all of those wires might be worth it, lol. We will miss him while he is gone, it has been GREAT to have him home!

Ginger, I wanted to Thank you for the girls craft goodies and our cards, you are a sweetheart!!

May you ALL be blessed on this Father's Day...as you worship in church this morning, PLEASE ask your fellow congregants to keep us all in prayer!

---

Wednesday, June 15, 2011 4:23 AM EST

Of course we still have no air upstairs; however, I HOPE to have a few moments today between appointments to line up someone to come out and give us an estimate to replace the upstairs unit. There simply aren’t enough hours to get everything done and Rachel once again was quite ill last night...she needs my undivided attention when that happens. Thanks for letting me vent. Now I am moving on to HAPPY NEWS that I have been wanting to share about Lisa Making her WISH!!!! Several are under the misconception the Disney pics on the front page are from a MAW trip, they aren’t. My in-laws very graciously let us stay at their RCI accommodations, which made that trip possible. Couple that with left over tickets we had when the older three were younger and that trip was made possible. We were told when Lisa was a baby that she could make a wish when she turned three years old. It has always been our opinion that we would let Lisa make her wish when she was old enough, otherwise it is OUR wish, not hers :o) Children are only ever granted ONE WISH no matter how sick they are or how many diagnoses they have that would qualify them. Last year when she turned 7 she told us she was ready to make her wish. We had to put it off twice due to her health, then Rachel's health...we finally received the go ahead from Rachel’s doctors to start planning again, so on April 30 Lisa’s Wish Granters were FINALLY scheduled to come!!!!

I wanted to make this day VERY special for her, she has waited a LONG time for this Wish to come to fruition. After breakfast, I gathered David, Rachel and Lisa on the couch (Christian was at school unfortunately). I had made up this ROYAL PROCLAMATION to let her know what was happening later that day:

ROYAL PROCLAMATION

for

PRINCESS LISA

and her siblings

Princess Rachel, Prince David and Prince Christian (in absentia)

In Honor and Recognition of your
Courage and Bravery
no matter what the circumstance,
your Patience, your Kind Heart and Sweet Smile.

Your Fairy Godmothers are coming to Grant you your
MAKE A WISH and HEARTS DESIRE.



WHEN: Saturday, April 30, 2011
TIME: 1:30 PM in the Afternoon
WHERE: Your Royal Castle
DRESS: Whatever you Wish
WHO: Fairy Godmother Rosalyn
and
Fairy Godmother Leigh



She was SO excited!!!! Then she was crying happy tears. Making a Wish is such an emotional, exciting, tough experience!! You only get one...what should it be? She considered LOTS of choices, and played around with ideas.

Pete and the girls had a new Dog Class starting that day with Bandit, so they left to attend and I began the mad fury to clean the house. About 25 minutes after they left I got a call, Pete and the girls were stuck in traffic and couldn't move (we found out later there was a memorial service/program honoring Vietnam Vets causing the traffic problems). Pete brought two disappointed girls home (there was no way to get to the class). Think quick Mama, how do you make some more magic??? We decided to make little gift cards to go with the Angel Pins they were going to give to the Fairy Godmothers/Wish Granters. We wanted to extend some magic to those who were going to make US smile! Lisa has been working on a WISH Journal I made, full of all her wishes and dreams for months now. She added things almost daily. I KNOW it was a LONG wish, every time she saw something new she added it to her journal...it was a constant companion on too many long doctors' appointments, it was exciting to be Dreaming!

Close to the time the Wish Granters were coming, Lisa wanted to dress up for them. She chose her Cinderella costume and greeted them at the door when they arrived, along with David and Rachel.

The morning I gave her the proclamation, I asked her what her Wish was she said "I wish for....I FORGOT!!!!! When I said was it *****...she got a huge grin on her face and said YES!!!!! She has had two strokes, so it isn't unusual to forget, especially in exciting/stressful situations. She is learning to write things down to help her remember.

Below is Lisa's multiple wishes from “Lisa's **** Journal”. Most she will not be able to do because we can't afford it...but we WILL be doing some of it!!!!

“My Wish is... to be FAMOUS AT DISNEY WORLD! I want to go to Disney World with my Mom, Dad, Christian, David and Rachel (YES), I want to be the family that rides the train in with all of the characters and open the park (NO), I want to dance on stage with the Beast at the Beauty and the Beast show (NO), I want to be in a parade (NO). I want to have lunch in the castle (YES, if we pay for it. We had already told her she can't sleep in the castle) and eat with Belle and Rapunzel (NO), I want to eat berries from the bush's in the maze (We don't know what she is talking about), I wish Bandit could go with us (NO~THANKFULLY. I LOVE Bandit, I just don't want one more thing/person to keep up with on our trip), I want to go to the Halloween Party (Yes, if we pay for it. This is the Mickey’s Not so Scary Halloween Party~MNSSHP) and meet all of the Princesses I love and meet Dopey (everybody gets to meet the characters). I want to have dinner at Park Fare Restaurant and dance with Prince Charming dressed as Cinderella (YES, if we pay for it)I want to become a Princess at the BBB in Downtown Disney (yes, if we pay for it) I want to sing the song Canada in Epcot (we aren't Canadian, lol. They said they would research that). I want to be famous and have everyone at Disney know who I am (NO), I want to ride in a Limo, so everyone knows I am famous (YES, but I asked them NOT to tell her), I want to swim with the dolphins (YES, if we pay for it)”. I hope I didn’t forget anything, I don’t have her journal in front of me.

Make a Wish will provide us with 6 nights and 7 days at a WONDERFUL place called Give Kids the World. Click on this link to see GKTW, the INCREDIBLE place we will be staying! They will provide us with 3 Disney Tickets, 2 Universal Tickets and 1 Sea World Ticket for each of us! We have all wanted to go to the Wizarding World of Harry Potter, so this will be an added bonus. The problem is there are 6 tickets and really only 5 days to do anything (two days are travel days). PLUS, GKTW village has MANY activities that we will partake in...so we need more time! Lisa is NOT able to do back to back multiple park days, due to her health. We will extend our trip by four nights, which will help. We have heard of too many stories of children going on their Wish Trips and becoming ill from exhaustion. We would LOVE to spend the last four nights on Disney Property; however, I would have to rob a bank to make that happen!

Our travel dates have been CONFIRMED for October 13 to October 23...we are INCREDIBLY excited!!!! I have MORE to share in a future post. For now, I hope you enjoy the photos!!! They show the children waiting on the Proclamation, Lisa’s tears of happiness, Decorating their gifts, Resting on the couch waiting for the Fairy Godmothers to arrive, Looking for the Wish Granters, and during the meeting with our Wish Granters.

---

Monday, June 13, 2011 11:55 PM EST

Today began with high excitement at our house, in spite of the heat/humidity and no air. Lisa's hematology appointment went well (her BP and coumadin level were both good for a change, yahoo) and the respiratory therapist is pleased with her oxygen numbers.

The good feeling didn't last, we have two air conditioners in our house; One for the upper level and one for the lower level. The lower level air conditioner IS working, Praise God. The upper level A/C is not working. At the heat of the day it was over 100 degrees upstairs. This weather is bad for Lisa's heart/lungs, even with air. The air condition repairman said there was no way to get the upper unit one working, he did try several things, our air compressor is shot. The problem is the units are 21 years old and even if we replace just the compressors at $3,000 to $4,000, due to the age of our units, that could cause it's own set of problems. To replace the top unit is going to be at a cost of $5,000 to $6,000. We simply don't have it. The repairman told Pete tonight that each floors unit needs to be replaced...I feel sick. Everything inside the house continues to fall apart. I am trying to focus on the good news from the MD today; however, it is hard and I am tired, it is too hot to sleep. With all of the appointments there isn't a lot of time to deal with extra "stuff".

Thank you to Ellen, Marilee and Wanda for the names of an A/C repairman. Does anyone know where/how to buy a new central air conditioner???

Please agree with me that a solution to the A/C will be found and soon! I am so weary of battling the daily fires in the midst of the medical woes. I would just like to be able to keep my happy feeling for more than a few hours. Something is always lurking around the corner to try and steal my joy...


Monday, June 13, 2011 2:26 AM EST

WE ARE SWELTERING! The air conditioner is broken and it is HOT! Thankfully tonight is a bit cooler, however, even with the windows open it is miserable...it is far cooler outside than in! Does anybody in our area have a reliable, INEXPENSIVE A/C repair person/service you can recommend??? We are in desperate need!!

Thank you to everyone who wrote such kind words about Rachel's guitar performance. It was a day brightener for us all. If you missed it, please click on Rachel playing guitar. On an EXTREMELY Happy note...Rachel has been awarded the Andrew Bradford scholarship for music study through Community School of the Arts! This means that she will take Summer lessons (starting TOMORROW), as well as Winter and Spring and it is a FULL RIDE through next spring...with HOUR LONG LESSONS!!!! We are ecstatic and she is on cloud nine!!!! She is FINALY beginning to realize she truly IS as good as we say she is!!!

I will have a video up; hopefully by the end of this week if Pete can figure out how to download it, of Lisa's MAGICAL Make a Wish reveal...she still thinks it is all a dream! She breaks out in tears of happiness every time she thinks about it...I also have happy news about David to share...

We have another busy week here...hematology, sleep neurology (Lisa AND Christian), and all of Rachel's MD's...the respiratory therapist will be here bright and early this morning to see Lisa and we will still be sweating, I am sure... PLEASE, if you can help me with the air, let me know!!! I will be eternally grateful!

---

Sunday, June 5, 2011 4:55 AM EST

Rachel had her Guitar Recital on June 4....I was able to take a video on my point and shoot camera, definitely not the best, BUT, the music she plays is amazing. She is playing lead, and her instructor, Lenny Federal and Pete, her Dad, are playing rhythm. Lenny is singing. They are performing at the McGlohon Theater. PLEASE feel free to forward and share with all of your friends, Rachel wants a lot of people to hear this. There are several solo spots, so continue to watch so you can hear them. The video is a bit long, but SO worth it! Rachel turned 13 on June 3, this was taped on June 4.

Here is the link:

http://youtu.be/TO7BVuVkNDY

Turn your volume up and enjoy!!!!

---

Friday, June 3, 2011 10:45 PM EST

I could not let the day end without wishing our newest teenager special wishes. HAPPY BIRTHDAY TO MY BEAUTIFUL RACHEL! Thirteen years ago you were born into this less than perfect world and you have been trying to set it right ever since you made your entrance! It seems like yesterday you couldn't wait to make your appearance, arriving five weeks early. Your heart and soul is so sensitive, you see injustice and champion the underdog. You don't recognize or believe how beautiful you truly are. I am so thankful for all of your gifts and talents. God has great purpose for your life and I strive daily to live up to the task of being your Mom. May you always stay grounded in your Faith and your Love of Our Lord.

The day has been wonderful, with only a brief appointment this morning and a trip to the pharmacy. My parents brought us a delicious lunch from Showmars and dinner was home-cooked hamburgers and pasta...accompanied by watermelon and a medley of broccoli, squash and cauliflower. She had phone calls from friends, her Meemaw and Pumpaw and Uncle Bill. There were cards to open (some with checks), a few gifts from wonderful friends...Thank you Lisa for all of the special gifts for Rachel and the unbirthday gifts for the other three were so much fun..those erasers are too cute!...Carol!!! As you know, that blanket/afghan/bedspread is amazing and so soft. I honestly do not know how you made a queen size blanket so quickly, I wasn't kidding when I asked you if you slept any. It fits the bed PERFECTLY! Pictures will follow when Pete is up to downloading them.

More excitement for Rachel tomorrow when she has her guitar recital.I hope to take pictures of that as well.

A special Thank You to Pete's brother, Tommy...you know why, words are simply not enough to express how thankful we are!

Thank you to everyone who wished Rachel a Happy Birthday, it meant a lot to her (and me)!

---

Friday, May 27, 2011 3:52 AM EST

Thursday didn’t turn out the way it was supposed to...we had only one appointment scheduled for the day...I should have known that was too good to be true. We were having a lovely morning of actually being able to do some uninterrupted school work. Lisa had slept in. She has finished all of her schoolwork for the year and we are now working on the following year’s curriculum when she feels up to it. She did amazing on her end of year tests (her first , in our state all homeschoolers must be tested yearly; however, in public schools they do not begin testing until the third grade. David and Rachel also did extremely well). LIsa was changing her baby-doll's clothes from her nightgown to her day clothes before she had breakfast. She stopped and laid down on the couch to tell me she had a horrible headache. I took her BP and it was on the high end of normal, nothing to worry about;however, her pulse was weak and thready at 44 beats per minute. It was a bit hot/muggy, so I turned on the air and gave LIsa some Tylenol (she can’t take ibuprofen d/t her artificial mitral valve). She denied any other symptoms and 10 minutes later her pulse rate was back up to 55 beats per minute. She was still lying on the couch. Ten more minutes passed and she was having chest pain, with increased pain while breathing. Her BP had shot up and her pulse rate had plummeted again. I listened to her heart and her rhythm was irregular. A quick call to the cardiologist and we were on our way to see him (Our regular doc was off, so we had to see one of his partners). About ten minutes from the office, Lisa’s chest pain finally stopped (It was an hour after everything had started). She was still very weak and tired. Of course, by the time we arrived her BP and pulse was fine and her EKG and ECHO didn’t show anything glaring. I had noted a strong smell to Lisa’s urine, so he sent us to the hematologist office to draw some labs and get a urinalysis. All of this took the rest of the morning and the better part of the afternoon. The problem with the blood tests is that to be accurate, they should be taken at least three times, with the first set taken 4 to 6 hours after the onset of chest pain...LIsa’s labs were drawn at the 3.5 hour mark...so, will they be accurate? I don’t know...She did begin to have an appetite about two hours after the onset of her chest pain, thankfully I carry some healthy snacks in the car and she had one as we went to the hematology office. One of our favorite nurses (ok, most of the nurses are our favorite) was taking care of Lisa and she thought she looked weak, swollen and just not her usual self. I had to agree. We finally returned home about 2 PM and I fed Lisa...she only ate 1/3 of her sandwich. By dinner time she was feeling MUCH better and ate about half of her dinner. I do not know what is going on with lIsa and her heart; however, I am NOT reassured by telling me that by the time we are seen and her pain has subsided that her tests results are as normal as they can be for her. I have seen the pain on her face, I have heard the irregular rhythm of her heartbeat and the faint/weak beat, I have taken her BP myself and seen the elevation. Don’t tell me everything must be okay because she is better by the time we arrive at the office.

The remainder of the day was spent dealing with some strange phone calls, insurance problems, preparing dinner and trying to rearrange a sleep study for Christian. As if I didn’t have enough to take care of, Christian's MD office called and told me that Dr. S had decided to go a different way with Christian's sleep study in case he required any treatment/medication following his sleep study...this wasn’t good news for me because we would have been able to do the sleep study for a better price if we had been able to keep things the way they were. As if that wasn’t enough of a pain, the referral person at Dr. S office wanted ME to call and make the arrangements...really??? May I have your paycheck as well, I am doing your job. Anyway, I pulled out my big old notebook, looked up the number and called Lisa’s sleep neurologist office. I was bounced around to three different people as they tried to figure out why I was the one calling instead of the MD office...good question...of course, if I had waited on THEM to do it at the MD office it would have been next week before anything was started...and Christian’s sleep study was originally scheduled for this Sunday. Finally one of them said she was going to ask T, one of Dr. H’s assistants. I said WAIT, let me talk to T myself, she knows me. I explained the money dilemma to her (which she already knew) and she made a few suggestions on how to do this as economically as possible (HA)! She asked me why I was having to take care of everything and I told her they just dumped it in my lap to handle. Being the jewel she is she told me she would take care of everything and I SHOULD hear something later today if the MD office does their part...okay, I can HOPE can’t I??

Pete is finally having his regular blood work done this AM, I hope it reveals information to help him. That in turn will help me. Speaking of good help, David and Christian have been a HUGE help and were great yesterday while I was gone with Lisa. After dinner Christian and I went to the Walmart so I could get a few groceries n the house and David vacuumed and changed the air filters, while the girls straightened up their room.

Rachel is having a sleepover on Saturday night to celebrate her birthday a week early. I can’t believe she will be thirteen next Friday. Please pray she feels well and that the girls have a great time. She invited 9 girls, 6 are definitely coming, 2 had holiday plans and we haven’t heard from one. Lisa also has a friend spending the night (the friend has never stayed away form home overnight except with grandparents, so this should be fun...I might be up at 4 AM taking a little one home, and it wouldn’t be the first time, lol).

Thank you to everyone who keeps checking on us. This is the quickest way for me to reach everyone, so forgive me. Lynn, I hope your hand and knee are okay, ouch! Carol, Thank you for the sweet card and whatever you want to do is WONDERFUL, Rachel will be happy! Cheryl, please feel free to call anytime, I should be home today...I think..., Ellen, forgive me for not getting back to you yet, the days (and nights) are just entirely too full. Mary Lee, Thank you for the info. I hope I haven’t forgotten anyone, it wasn’t intentional, it is just late or early depending on how you look at it. There is a LOT that has been happening around here, both good and bad. Thank you for keeping it all in prayer! Have a wonderful weekend!

---

Wednesday, May 26, 2011 10:51 PM EST

On a happy note, Lisa had a GREAT appointment at the Vascular Surgeons office. no change in the femoral occlusion, positive or negative...I will happily take that! Lisa HAS made her Wish and it has been approved. I hope to share more on that in the near future...praying it happens this time.

In other, news, we could definitely use some prayer...it is hard to have no one to help you, other than God...I don't mean He isn't an incredible help to me...however, He can't give me that physical help I desperately need...

---

Wednesday, May 26, 2011 10:51 PM EST

On a happy note, Lisa had a GREAT appointment at the Vascular Surgeons office. no change in the femoral occlusion, positive or negative...I will happily take that! Lisa HAS made her wish I hope to share more on that in the near future...praying if happens this time.

In other, news, we could definitely use some prayer...it is hard to have no one to help you, other than God...I don't mean He isn't an incredible help to me...however, He can't give me that physical help I desperately need...

---

Monday, May 16, 2011 11:59 PM EST

The girls choir concerts went well, although there were a few problems both nights. After Friday nights concert I had severe abdominal pain, reminiscent of February 2010 when I passed a kidney stone...the only difference was it was MUCH higher, more towards the front and the severe pain only lasted about 2 hours. I barely made it home before being so sick and when Pete brought the girls in a few moments later (we had to take two cars, since he came directly from work) I was NOT well. I am better now, still a little sore...it could have been my pancreas (I have a history of idiopathic pancreatitis)...I don’t need to know what it was as long as it NEVER comes back! Saturday there was some drama with one of the choir families (they had only been enrolled in the school the past four months). Without going in to detail, I am happy to report they will NOT be back! The other news on the choir front was decided today after seeing one of Rachel’s doctor’s. Rachel will NOT be going on the yearly choir tour this year. Her doctors feel that she is not quite well enough to be away from me yet, she continues to require round the clock medical care. If she HAS to miss a year of tour this is the year to miss...they have cut the dates from 8 nights to 4 (The Mastersingers are going to England, Rachel will be eligible for this trip when she is in High School, they travel there every four years) and will be staying close to home anyway. Rachel is understandably devastated however, she sees the wisdom in all of this as well. I have promised her special birthday activities to help take the sting of not going away. Prayerfully she will be fully recovered when choir camp resumes in August. We also have Choir awards night on this Friday night following Lisa’s ballet dress rehearsal.

I am so happy to report LIsa’s INR was almost normal! We will return on Thursday with David to see how she looks. She has two wicked scrapes on her knees and a horrible bruise on the inside of her knee. PLUS, her BP looked great! I love it when things are going well, or at least as well as they can!

David will receive his IV iron on Thursday, we will see his dermatologist that morning in one city and drive back to the hematology clinic in another city that afternoon. He isn’t thrilled about such a “big medical day” however, it couldn’t be helped.

Christian continues to be a huge help and we have found out that we must be very careful about how much money he earns this summer or he will DEFINITELY lose financial aid...I have someone trying to find out for me just how much is too much (Mary Lee, I wrote a message to you in the guestbook, do you know the formula for this??)...Tomorrow’s MD appointment is actually for Christian and his ADHD...

Pete is hanging in there, he is trying to help me as much as he is able. We are supposed to have a phone appointment with his Pennsylvania doctor on Wednesday; however, he didn't get his bloodwork done and I forgot to ask him tonight what the office said, I had asked him to call and reschedule, there is no need to have an appointment without the info, plus he never sent the check. We have to pay in advance of the phone appointment. (I just found out he did NOT call...so I reminded him again...).

We are praying for a MUCH calmer week...Okay, I can at least PRAY for that,
can't I ???? At least our end of year tests have concluded! And we survived last week, getting it all accomplished somehow!

---

Thursday, May 12, 2011 11:59 PM EST

It has been a busier week than usual and that is saying something. THANK YOU each and everyone who has left such supportive, understanding messages. In addition to the eight MD appts, 4 therapy appts and the children's routine activities we have had extra choir practices, 2 award nights (David rocked it all~more on that later. I was SO proud and had a bit of fun in the process), and we didn't get home from the last MD appt today until 6:30 due to travel time. The girls have choir concerts Tomorrow night and Saturday and Pete and I are working both nights, Rachel has agility training and Nosework classes with Bandit on Saturday, Rachel and Lisa have 4H Saturday, David's engineering post is going to Carowinds Amusement Park on Saturday...Thankfully they agreed to let Christian chaperone him ( I could not have done it without his help this week). As if that wasn't enough...we have also had end of the year tests for David, Rachel and Lisa this week...Lisa's tests concluded today and Rachel and David each have their final Math exam tomorrow. Next week is just as busy, sans the Testing, although we will continue to have school every day.

Lisa's INR (coumadin level) was still testing low today, I had a message when we returned home from the last MD appt. that in spite of the fact she is covered in bruises, she is still too low, not quite as bad as Monday when she was 1.5, but far from the 3 to 4 where we like to see her levels (she was 1.7). It took THREE vein pokes to get her blood today, poor sweetheart. She took it bravely no EMLA (numbing) cream today... My concern today is that she has seemed "off"...tired, not quite with it, a little "spaced out", pulse rate consistently in the thirties. She went out this evening to play and fell TWICE in ten minutes, skinning up her knee and elbow. The only bright spot was her INR IS low, so there wasn't much blood. Pete brought her back in and I helped her with her bath and she laid on the couch the rest of the night.

Rachel hasn't felt well herself, although today was a great day, Praise the Lord (yesterday, not so much). Her asthma has been flaring up, so the pulmonologist changed her inhalers around and added some nebulizer treatments as well...those make her a little jittery. The ortho doctor was surprised that her broken thumb wasn't completely healed and told us we would have to return in three weeks to ensure the piece of bone that is floating around begins to grow back where it should. At least it explains why she is continuing to have so much pain.

David is tired, but hanging in there. He really needed an IV iron infusion this week, according to his ferritin levels...I am only one woman and just simply couldn't squeeze it in anywhere. He will get IV iron next week, maybe twice. His Aviation Award night was SO much fun! They hosted us in the Pilot lounge and served the best of the best from the different airport restaurants...it was DELICIOUS! It was such a surprise. Three of the program mentors sat with us and I had a blast hearing how much they loved David. They all commented on his manners and his quiet demeanor. The curator of the Aviation Museum is trying to influence David to become a volunteer. He wants him to be a docent and I KNOW David would be great at it. He received his graduation award, 1/2 year school credit, perfect attendance award and a wonderful gift box with the airports name on it and inside was a beautiful pen, flashlight and tire pressure gauge. He loved it. As we were leaving, the program director told me he truly hoped David would be back in the fall...I am certain he will. Last nights Engineering Awards were more laid back; however, just as fun. They served pizza and ice cream and I was able to see the director of the Exploring Program. He and I share a mutual admiration for each other. {He had been at the Woodworking Post on Tuesday afternoon and the men couldn't praise David enough, from what he shared. He was in awe with David's latest project, the work is incredible, especially the hand done dovetailing and I can't wait to share it with you when it is completed}. Back to the awards night. David received his graduation award, 1/2 year school credit, perfect attendance award and a beautiful polo shirt (David LOVED it, he only wears Polo shirts, with an occasional T-shirt on rare occasions) and a flash drive in green (his favorite color).

Christian has been a HUGE help and I honestly do not know what I would have done this week without his support and help. He has not had the opportunity to look for a job and now I have a new concern/wrinkle in the mix...I was told if her gets a job he might lose all of his financial aid and grants that he qualifies for due to our income...we can't make up the difference so I need to discover if that is true or not.

I am certain I am missing something; however, that is everything as concisely as I can get it...I am tired and my fridge is needing to be dried out again and the cups catching all of the leaking water need to be emptied before I go to bed. . We DO need a new one and I might just break down and ask for help, it is such a mess to clean it up at every turn and keeps everything soggy...the good news is the end of year activities ARE slowing down...and then the summer activities will begin...and Yes, I try to take time to breathe...and Thank God for my blessings!

---

Friday, May 6, 2011 6:12 PM EST

I have a lot I could share; however, I want to have a happy, joy-filled post.

Lisa had her ballet class Wednesday and we were allowed to come in to watch the last few moments. The girls had just received their costumes when one of the children was sick all over the floor. I felt badly for her, the instructor and all of the little ballerinas. They regrouped and pulled their costumes over their leotards and the music started. I had NO idea what I was doing as I videotaped (still not sure); however, I managed to tape this VERY raw performance...these girls are aged 7 to 8 and most have been taking dance since they were three. This is of course Lisa's first year of ballet, many of the girls have danced before. I hope you enjoy the VIDEO. Please keep in mind she has had two strokes leaving her with right sided weakness (head to toe) and her right leg is shorter than her left. She wears a brace to walk. God is GOOD!! What a graceful beauty she truly is!

In case I don't get back by to say this, HAPPY MOTHER'S DAY to all of the wonderful Mom's out there! A special Happy Mother's Day to my own Mom and to my Mom-in-Law! May your day be blessed. Thank you to Lisa and family for my Nurses Day Card (what a surprise:o) and for My Mother's Day card! Loved them both! Thank you to Karen V for my cute card and surprise! Each and every one of you who take the time to visit and pray for our family is truly special and a gift from God and I appreciate your lifting us up in good times and in bad. I promise to update you on Lisa's Make a Wish very soon. May you have a joyful weekend!

---

Friday, April 29, 2011 1:56 AM EST

Lisa's INR was on the low end of normal at the hematologist. We increased her coumadin level AGAIN and will return Monday. Her weight was up yet ANOTHER pound, WHY they do not know. She IS retaining water. On a happy note her BP was good! We will take any good news we can get!

Lisa had ballet on Wednesday and they learned the last part of their ballet number. The instructor invited us in to watch what they have learned...I was SO SURPRISED to find Lisa center stage and IF they had a lead she would have been it! The dance is short, but Lisa is front row, center almost the entire time and at the middle and end, she is definitely the Prima Ballerina as all of the little ones gesture to her and she is center stage with her hands in the perfect Ballerina stance. I don't know what the pose is called, but she was simply BEAMING at me! Lisa's recital is May 21 if anyone wants to attend. Tickets are $6.00 each.

PLEASE don't think I am trying to brag, most of you know each and every obstacle this child has fought to simply breathe and eat...and realize I am NOT bragging, it is pure, unadulterated joy!!! Tears were pouring out of my eyes, this has been a LONG time coming and the pure happiness on her face was PRICELESS!!!! EVERYONE commented on how great she did and this is her first year (most have been dancing since they were three). I am teary typing this. My only regret was I didn't have my camera! I will not make that mistake next week. The instructor came up to me after class and we both cried and hugged each other...she is incredibly proud of Lisa and her hard work It has been amazing therapy for Lisa. Her scoliosis, short leg and right sided weakness from her strokes have all benefited from the dancing! We are SO blessed by an Angel to help us do this for Lisa!!!!

On a very different note, I ask you to explore this website and help me figure something out. As most of you know I truly believe all of our health issues stem from Pete's service during the Gulf War. HELP ME do some research and help my family...PLEASE!!!

http://immed.org/illness/gulfwar_illness_research.html
http://immed.org/index.htm
http://immed.org/letters.htm

If you REALLY want to help me, read Project Day Lily by Garth and Nancy Nicolson. I could say more; however, I will not. Please continue to pray!

---

Sunday, April 24, 2011 10:31 PM EST

Happy Easter everyone. Here are a few photos of Pete and the children with Pete's Birthday cake.

Ginger, you asked about Rachel's hand...she broke her thumb and is in a splint for at least three more weeks. (She has it off in the photos above because she had just washed her hands).


Sunday, April 24, 2011 3:51 AM EST

I just wanted to give a quick update to say I am so joyful the past four days, a place I usually dwell; however, it has been very difficult since April 9...this has been the longest period in recent memory where I felt as if my joy was gone and I didn't like that feeling at all!!! Usually it lasts for a few hours and I can shake off most anything...this was over a week of feeling this way! I want to say a special Thank you to each of you who reached out to carry me through these trials. Prayer is so powerful.

Rachel has her splint on her thumb and wrist.The Ortho Doc couldn't see us until WEDNESDAY afternoon. I did like the doctor very much though! She has some pain medications now, which has helped, Praise God. Lisa, while exhausted is pain free, another huge Praise! She spent the night with my Mom Thursday and they had a ball. David is doing well also, Thank the Lord! In addition, Pete is finally feeling better and was able to give me a bit of help around here, so that was HUGE as well!! I don't like to complain but it CAN be a heavy burden with all of these medical challenges and the variety of them all. The neurologist who cares for David, Lisa AND Rachel for three VERY different medical problems told me this week I was Amazing...me, Amazing...it literally brought tears to my eyes to have this very compassionate woman lay out for me how she admired me...very humbling...I have done this for a VERY long time, by myself, with only God, to get me through.

Christian is HOME and I am so happy!!! I take him back on MOnday and then he will be home for the summer two weeks after that!My Dad was working out of town with my brother this past week and we picked him up and took Dad home on Friday on our way back from High Point.

...And on APRIL 30 the MAW Granters will be coming to our house...I can hardly wait!!! Lisa will FINALLY make her WISH!!!!

I wanted to give a HAPPY update for a change and say a HEARTFELT THANK YOU for your kind words of support! Thank you to Lisa Z and her family for the Easter candy kit, the egg dye, the pop rings and the bendy rabbits and Thank you to my friend Karen V, you know why!!!

May you all have a truly WONDERFUL, God-Filled Easter.

Also, last, but definitely NOT least....Happy Birthday to my Dear Husband.This is only the second year since 1859 that Easter has been observed on April 24; the next time for this date will be in 2095. Pete, we pray your rare Easter Birthday is VERY special!!!!

For you know that it was not with perishable things such as silver or gold that you were redeemed from the empty way of life handed down to you from your ancestors, but with the precious blood of Christ, a lamb without blemish or defect. - 1 Peter 1:18-19





alt="Photobucket">

---

Monday, April 18, 2011 10:22 PM EST

It turned into a long day. We had to add an extra MD appointment to our day, Rachel hurt her thumb yesterday....popping her knuckles, of all things. Pete taught her how to do that. It was a late appointment (after Lisa's hematology appointment) and they didn't X-ray her hand until after 5 PM, then we had to run to choir. Lisa and I had to leave early due to her feeling sick. Pete came by and picked up Rachel and her friend. The pediatrician's office just called (at 10 PM...the doctor on call actually, that is never good). Rachel has broken her thumb and we will have to go to the orthopedic doctor tomorrow for them to decide how to best treat it. She doesn't know yet, although she has an appointment at 9 AM with another doctor. Lisa is also asleep, which is good since she was so sick. I hope this makes sense, I am tired....and broke.

---

Saturday, April 16, 2011 10:40 PM EST

This has been a very tough week, it is true. I thank EACH of you who have left us messages of support and those who also lurk. I am certain that we have had MANY prayers lifted on our behalf and that means a LOT to me. It has also helped!

Today has been busy, in spite of some very WILD weather. David had woodworking, so I took him and stayed in the area in case of tornadoes/etc. Pete stayed home with the girls. We were just having sporadic rain and high winds until I went in to pick up David shortly after noon and then the heavens opened up and it POURED! It sounded worse in the woodshop due to the tin roof; however it was coming down so hard we stayed inside for almost an hour waiting for it to slow down. I ran through water that wasn't there when I went in up to my ankles and pulled the van as close to the door as I could to pick David up. We came through LOTS of flooded road areas, not completely covering the road, I know better than to try and drive through that! The problem is people don't want to slow down, even on the Interstates and there were wrecks everywhere. We lost some tree limbs; however, THANKFULLY that was the extent of it. Not far from us both to the east and south there was LOTS of damage and someone lost their life.

I could NOT let the day pass without sharing today is a VERY special and glorious day. EIGHT years ago today Lisa had her second open heart surgery. She was six weeks old and very sick. They repaired Lisa's mitral valve (mitral valve surgery in a newborn is very risky) and told us she would definitely require surgery in the near future; however, the surgeon "hoped we could get her to age 1, so that he had something to work with"...we did better than that, we made it to age 16 months, God is truly in control! That time was DEFINITELY needed to get her bigger and stronger. During this second surgery they also repaired her ASD (hole in the upper chambers of her heart). I remember thinking that a hole in the heart was the worse thing in the world when I was younger...that was the EASY part of the surgery, if that had been the ONLY thing wrong with her heart, how different things would have been! Believe it or not LOTS of babies have ASD's (10% of all CHD's) and VSD's (30% to 60% of all CHD's) and often they do not even require surgery to repair. God has a sense of humor. Hearts were one of my least favorite rotations in Nursing School, even though I actually did an internship on a step down unit and now I can spout off all types of heart statistics and info. I promised God when He saved Lisa's life I would share her story with all who would listen and that I would educate others about CHD's, the most common birth defect. I share all of this to say....HAPPY ANNIVERSARY SWEET LISA!!! I am so glad you are my daughter, I have learned a lot from you about Faith and Love...I BELIEVE!!!

I claim tomorrow to be a glorious day and pray that those of you in the path of the storms have been spared heartache and pain. My FIL is improving, Praise God!! Next week should be better for us, we only have 6 MD appointments and four therapy appointments...PLUS, it is spring break so there will not be ballet and guitar... although there WILL be a road trip on Friday to pick Christian up for Easter. We will also still have school, catching up from all of THIS weeks appointments.

---

Wednesday, April 13, 2011 10:45 PM EST

This has not been my favorite week. Thank you for your supportive notes...what a day brightener you all are! Thank you!! I am just taking the moment to update. I spent the morning sitting in the car repair waiting room having some work done on my van. Jessie promised to have me out and on my way by 9:45 AM, and she did. I had to be on the other side of Charlotte for an MD appointment for Rachel by 11 AM and I made it...from CONCORD! I was there from 7 AM, although I left the house at 5:30 AM so I could go to Walmart and buy some non-perishable food and toiletries before my service appointment. It has been a long day.

My FIL had his open heart surgery today in Baltimore (at the hospital where my BIL works), so if you could keep him in your prayers, I would greatly appreciate it. They replaced a calcified aortic valve with a cadaver valve. He is having pain, and some minor complications they are treating; however, he is awake and communicating with my MIL. He is still intubated. Thanks for letting us know Susan (Pete’s sister).

We have had a LOT of appointments this week. Rachel is feeling pretty well for the most part; however, when she isn't well it comes on fast and suddenly, often with little warning and at least once a day. It is exhausting for both she and I. She had a few bad moments tonight and we are contacting the neurologist tomorrow to see if it is medicine related. David is doing well, he had his IV iron on Monday and has felt much better since he received it. It is liquid gold for him. We have one more big appointment tomorrow for him with the neuro-opthalmoligst. He dreads this and frankly so do I. He will have his visual field, fundus photos and a slew of other tests. What he dreads most is having his eyes dilated. He is so sensitive to the drops it lasts for hours. Thankfully they switched to the baby drops for him, he used to stay dilated for more than 24 hours... two days has not been uncommon for him. That always makes him feel horrible and increases his headaches, so we ARE Thankful for baby drops! He had engineering explorers tonight and they shot off bottle rockets they made...he had a blast!

As for Lisa...while the cardiologists don't have clear answers as to WHY Lisa is having increased heart pain. The theory for her BP is that the pain happens, her BP shoots up then her pulse drops as a physiological response. That makes sense when she is having pain; however, WHY is it up and all over the place up and down in the space of minutes....We have seen the pediatrician, neurologist and hematologist this week thus far. ALL THREE fear something is brewing in her heart and it just hasn't made its way to show up on the tests yet...of course, all we have done is an EKG and a limited ECHO...I am watching her closely and THANKFULLY she has not had any additional pain; however, she is still quite fatigued She took a 3 hour nap yesterday. She had also gained another pound and is retaining fluid, without any doubt. By the early afternoon Lisa's socks are making ridges into her ankles where the cuff is. This was VERY evident because at the neurologist Monday morning she had slight pitting to her legs, NO ridges. By 2 PM at the hematologist she had deep ridges cutting into her ankles. So I watch her and try not to worry...Today at ballet she got so hot I had to take her to the bathroom after she laid down to rest and put cold cloths on her neck and head and bathe her in cool water...

I am tired, it has been a long day. Thank you for all of the prayers on our behalf and for checking in with us.

---

Sunday, April 10, 2011 11:35 PM EST

I only have a moment to say Thank you to everyone who has checked in on us this weekend. It has not been a great weekend around here; however, I wanted to tell you we are still here. It is the least I can do for those who have taken the time to let me know you are here thinking and praying for us. I asked for specific prayer requests and would like to update you on what I can, since you have been so kind to check on us.

1) My FIL's Cardiac Cath was postponed until tomorrow. He had improved by Friday morning so they had planned to discharge him Saturday and bring him back as an outpatient on Monday; however,the plan changed again and they decided to keep him until tomorrow and do the Cath as an inpatient. Continued prayers please.

2) Lisa saw both the pediatrician and the cardiologist on Friday (two extra appointments I didn't expect). Of course her ECHO and EKG "looked fine" although I have great issue with that assessment considering they couldn't even see her coronary arteries "d/t scarring." I will be speaking to her regular cardiologist later this week, he was out of town Friday. Thankfully Lisa has NOT had any chest/heart pain since Thursday night. Her BP is fluctuating wildly within the span of five minutes, I have NO idea what to make of it. She does have autonomic problems so I wonder about that...

3) Rachel is still not well, continued prayers please.

4) David passed his test with flying colors, PRAISE GOD!

5) Christian is doing well, although no money for next year yet. We had a lovely conversation tonight.

6) Pete needs continued prayer. He does not do well when his medicine is off and things are pretty hairy around here.

7) I am still hanging in there.

It has been a tough weekend. The coming week will be a whirlwind. We have four MD appointments tomorrow and David needs IV iron plus choir and woodworking, two MD appointments on Tuesday plus therapy, guitar and aviation explorers, two on Wednesday plus ballet and engineering explorers, two on Thursday, plus David needs his visual field for the Neuro-Opthalmoloigst, and Friday we have two MD appointments and therapy. Monday and Thursday will be the toughest days. We appreciate your prayers. I will try to answer my emails as soon as I can.

I want to say a special Thank You to Jen and Lainie for the visit and surprises today. She had her MIL make the girls beautiful comfort quilts and beautiful bracelets from her friend. They brought David a Fire Fighter T-shirt and a patch and emblem from a Virginia police Department. It was such a nice surprise and wonderful visit.

THANK YOU again to everyone for your kindness and continued prayers.

---

Friday, April 8, 2011 2:15 AM EST

I can't sleep, I have far too much on my mind. Prayer Warriors, I ask you for several things tonight:

1) My Father in Law is once again not well and needs prayer please. He is having a Cardiac Cath. today (Friday) to determine if he needs open heart surgery. Please pray that the correct course of treatment will be easily revealed. Please pray for my Mom-in-law and and all of our family, as God shows us grace and gives us peace as we wait for the news.

2) For Lisa, who once again had an episode of chest pain Thursday night, just before bed. She immediately came to tell me this time. She was hot, her BP was very high and her pulse rate was quite low. She DID recover fairly quickly; however, I will call the doctor in the AM. This is NOT typical for a child.

3) For Rachel, who has not felt well since Wednesday; however, kept it a secret from me until just before SHE went to bed, not wanting to worry me.

4) For David, who is taking a very important test. He is quite nervous, please pray he is able to relax enough to do well.

5) For Christian, who is having financial concerns related to his scholarships.

6) For Pete, as we continue to try to get the right balance of medications for him.

7) For my stamina to continue, so that I can face all of the extra appointments/stress we are encountering.

8) For OUR pocketbook, which is taking a huge hit with all of the additional medical expenses.

9) For our country as we face more problems than we can solve on our own...we NEED God in our government.

Today (Friday) is Pete's and my Anniversary.

And whatever you do, whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through Him. ~ Colossians 3:17

---

Sunday, April 3, 2011 4:32 PM CDT

Pete finally had a few moments to download my photos from last weekend. Here are a few from the Pancake Breakfast Fundraiser at Applebee's and one more from the woodworking show. I will post a few from the TDI Testing later.

Rachel and a few of her choir friends.





David and Christian enjoying their breakfast.





Lisa ready to dive in to her pancakes!






This is a photo of some dovetailing David did on a machine last weekend at the Woodworkers show. The vendor wrote this on his wood, look at that detail Top AND bottom! The man who owned the machine was stunned at David's proficiency and was surprised at how well he handled the machines... he was even more surprised when Pete told him he could do it by hand. NOW David wants this machine, he could do dove tails in about a minute versus half an hour.

---

Friday, April 1, 2011 11:15 PM EST

I will preface this by saying I WISH this was an April Fool's Day Prank...but it sadly is not...

First, good news...Since Tuesday, Lisa has had a weird episode with her heart either pain (Tuesday and Wednesday) and yesterday, she said it felt as if someone was grabbing her heart from the inside and pulling it back towards her spine. Today, she didn't have any strange or weird feelings and I was INCREDIBLY relieved!

On to Rachel, she had a bad episode of pain both Thursday and today...but the worst part for her is she ran into the door jam last night when she wasn't feeling well and BROKE her little baby toe! The doctor was worried it had broken her foot, thankfully it WAS isolated to the toe. All we can do is keep it iced, elevated and taped when she is walking.

This afternoon, just before Rachel got very sick, the toilet upstairs overflowed...it was the most water I have ever seen flow out of a stopped toilet...it took a LOT of towels to clean up the water and soaked into my hallway all over the carpet. God Bless David, he unclogged the toilet and soaked up the water in the hall while I was wiping up water and wringing out the towels so I could wash them...David put a fan up to dry the carpeting and it is now good as new.

The last problem of the day was my vacuum died...David and Pete have fixed it so any times, but David said it simply has no more lives left to give...I guess I can't complain, it has been a good one for almost 15 years... Pete looked at it; however, frankly he couldn't figure it out either.

Lisa DID play a prank on Pete...she told him that she and Rachel were on the news...he didn't believe her at first, I could tell he was humoring her , so I told him Dr. H had submitted a news story about them and they had put the girls on TV...he was falling for it until Lisa began to giggle hysterically...of course, that was better than the prank they wanted to play, they had planned to tell him I was going to have a baby...I was worried he would have a heart attack and convinced them to think of something else...Not sure how Lisa thought up the news story, but I thought it was a good one. She is quick on her feet.

Our weekend is far less hectic than last weekend... Christian didn't come home...I miss him...

---

Wednesday, March 30, 2011 4:04 AM EST

Tuesday started off fine, We got several subjects completed before I had to take Rachel to the MD, which went well. Pete was able to join us for a change, and it was nice to see him in the middle of the day.. We got back home (after a 45 minute drive, it is a long way to this doctor...think lots of Gas...). We had lunch, then it was time for Lisa’s hematology appointment. She has been running high coumadin levels; however, I was worried she was now low. At choir on Monday night, she was so exhausted by the end of the night she wasn’t staying focused on what was happening in class. I was optimistic though, because she had cut her finger in the middle of choir (on some music) and it bled profusely...of course, looking back on it now, I realize it was just typical bleeding for a coumadin user.

My fist inkling that the afternoon hematology appointment was going to be a lengthy one came when they weighed Lisa...she was up another pound plus since last week...I wasn’t surprised, because her tummy is distended. Next her BP was high 148/90 in one arm and 150/92 in the other. It was confirmed her INR WAS too low, which correlates with Lisa’s extreme fatigue at choir. After a thirty minute rest her BP was down to 128/88, so they let us go home. Things seemed fine on the way home, although I heard her mention to Rachel she didn’t feel right (Lisa was reading a story aloud that she had gotten as a prize at the doctor's and I thought she might have gotten sick from reading in the car). When we arrived home, I was helping her out of the van and she looked at me and said she didn’t feel well. I asked what was bothering her and she said her heart didn’t feel right (She very RARELY complains or tells me things like this). I took her pulse and it was 48...now she does become bradycardic (low heart rate); however, she is typically not this low unless she is sleeping or resting for a while. I carried her inside and put her on the couch and took her BP intermittently for 20 minutes and checked on her Heart rate. Happily her BP stayed in the 120/130 range over 80/90 range. Her heart rate remained in the 40’s and then began to pick back up...when she hit 50, she was feeling MUCH better...and Rachel was not well. I took care of HER for 30 minutes, then SHE was fine...and we had 10 minutes before it was time to get Rachel and David to Pete. Just enough time for me to get their picnic dinner ready to take with them. Pete and I rendezvoused in a parking lot where we often exchange children. Lisa and I came home through horrible traffic and had OUR picnic dinner together. Tuesday has become a special time for the two of us since Rachel has been so sick...it is my FAVORITE time of the week. Pete took David to Aviation Explorer’s and then he and Rachel went to guitar and back to pick up David...more time for me to spend with Lisa, who felt just fine, Praise God. Thankfully Rachel felt well also. They all got home, took baths and medicine and have had a quiet night...YEA!!! Me, not so much, I kept getting up to check on everyone. Please keep us in prayer as we face another full, busy day.

---

Friday, March 25, 2011 5:41 AM EST

Thursday started out well, we had Math, English, Science and History covered by lunch time and then it was off to the doctor for Rachel. All went well and some adjustments were made, then it was therapy for Lisa and we went home to cook dinner. Pete was late getting home because he left work early to ...PICK UP CHRISTIAN!! He found out that his Friday classes were canceled due to a conflict of schedules within his department, Christian decided to come home since he had an unexpected three day weekend. It made US happy! We had a late dinner, took a walk and played outside and I did a little cleaning up after tucking the girls in bed. I went upstairs to check on the girls before I TRIED to get on the computer. I found Rachel quite ill and in pain...long story short, I finally got her feeling better, tucked back in bed and stayed with her until she fell asleep...It is two steps forward and then BOOM two to three steps back. All I can ask of you who read this is to PLEASE keep praying for my child. Funny how one minute things seem to be looking up and then reality crashes back in. I am feeling better though ...

We have several appointments, then on Saturday there is a pancake fundraiser for the girls choir school, David has Fire Fighting...I think they will be doing vehicle extrication (if I remember correctly). We are volunteer helpers for TDI (Therapy Dogs International). Saturday there will be a certification class to see if 20 more dogs will be eligible for therapy dog work (they come from all over the state to be tested). We will be there to man the stations. I usually work the greeting table, making sure all of the paperwork, vaccines, and vet records are in order, Pete is the muscle and makes sure everyone is doing what they are supposed to and the handlers keep their dogs under control...he is also my gopher... Christian, since he is in town, will fill in where necessary...he has done a variety of the jobs in the past. David will NOT be there this time, due to Fire Fighters. Rachel and Lisa are distractions, they try to entice the dogs to NOT listen to their owners using wheelchairs, walkers, IV poles, loud noises, calling them. Rachel also often holds the dogs while the owners have to leave the room for a full three minutes. The dog MUST sit quietly and obediently, without whining. We all have to clean up, there is usually a LOT of dog fur EVERYWHERE! Sunday Rachel is taking her FIRST lesson from the gentleman who offered to be her second guitar teacher...and yes, there will NOT be a charge. FREE...he sees talent and he wants to help. Rachel is ecstatic! David has a woodworking show, the guys at the wood shop chose him as outstanding Woodworking Explorer and want him to come out to their booth and speak to other potential youths about the opportunity to be an Explorer...then he gets to stay at the show for free, he is REALLY looking forward to that. They even gave Pete a ticket, so that leaves the girls and I to get Christian back to college. I ask you to PLEASE pray for us all, especially Rachel. We have a lot of irons in the fire this weekend and need everyone's strength and health to pull it off!

PLUS, I have 4 tickets I would like to GIVE to someone for the Pancake Breakfast tomorrow morning. IF you can use them PLEASE DON'T BE SHY!!!! They are YOURS for the taking! NO CHARGE just GREAT FOOD!!!

---

Monday, March 21, 2011 9:25 PM EST

Lisa playing/singing for Dr. H.




Dr. H enjoying the song.




Showing the girls what she has learned in her last 6 months of guitar lessons after LOTS of coaxing from us!




Posing with the girls.








Lisa playing for the people in the waiting room before we left.




David before going to the parade.













David is in the back left corner, I hope you can see him.






Another long week coming up. Rachel was not well over the weekend and if you could send some special prayers for her, I would be so thankful!!!

---

Friday, March 18, 2011 5:28 AM EST

Eight years ago TODAY, Lisa had her first open heart surgery at UNC...It is always an emotion filled day for me. Happy Anniversary Sweetheart!

There were no surprises at the sleep neurologist except...we don't have to go back until the first of JUNE!!!! Which is a great thing because Rachel’s regular MD appointments are now at LEAST three per week, most weeks 4. Add this to David and Lisa’s appointments and when I think about it, I feel faint. Let me just say, yes I am an optimist most hours of the day, but that gave me pause briefly on Tuesday. I am only human after all...I don't know how long this will last with Rachel requiring all of these MD appointments; however, I am TRULY grateful for any and all relief I can get so prayers for financial relief would be great, along with the children's health!!!!

I want to share something happy about Lisa (and a little about Rachel). The hem-onc staff gave Lisa a pretty pink plastic Rapunzel guitar for her birthday (Have I mentioned how much they love her and how much WE love them)...as I have said, Rachel plays the guitar like no other 12 year old I have ever heard. She has taught Lisa one chord on this plastic guitar, which Rachel has tuned and it sounds great, even for pink plastic. Lisa decided on Sunday she wanted to write a song for the staff at the hem-onc clinic, so she sat on my bed, strumming her guitar and singing as I typed what she sang...and it is good. Monday she took her little guitar with us to the clinic and she played for everyone who would listen...they were amazed at how well she sang and the beauty of the words. They thought I had written it. Then Rachel played that little piece of plastic and mouths were hanging open. 

Lisa was THRILLED  at the response she got Monday, so Tuesday when we went to the MD, she wanted to bring her guitar with us to play and play she did...we had a waiting room full of audience members who kept asking her to play her song again (It is a short song) as someone else would hear her and wander in...then they were having Rachel play as well and it was just so much fun hearing all of the nice things about my daughters! Dr. H kept insisting I should put them on youtube so they could be discovered like that "Jason Bieber" was. (Yes, I know it is Justin ). I said, well then I might be able to pay your bill.  (I have a GREAT relationship with our doctors, most are like family ).

On Thursday, Rachel had an MD appointment near my parents house. I took Lisa and David over to stay with them while we were at the doctor. We took the pink guitar and Rachel’s acoustic so they could hear the song. First Lisa and Rachel played while Lisa sang, then Rachel sang as a duet with Lisa...of course they loved it, they are grandparents! Thursday night we didn’t have ANYWHERE we had to be, so we took the children down to the music store so they could play...the girls LOVE to go and play all of the instruments. David went as well, even though he said he felt out of his element. Jeff, the manager LOVES Rachel and always talks about her raw talent. He wanted to know where she had been, he missed her (we haven’t been in since Rachel was in the hospital). He was challenging her to play some difficult things and giving her tips as he always does. He played a song for us he had written and asked Rachel to join in, helping her with ideas, etc. I asked him if he wanted to hear a song Lisa had written and of course he said yes. He was dually impressed both by her voice AND her lyrics. He even gave her a small guitar to strum and play along with big sis (remember, she just plays one chord :o) He kept looking between Lisa and Rachel and had this look on his face...then asked me how old Lisa was (she looks like she is about 10). I told him she just turned 8. He was surprised by her poise and voice. He owns a recording production company (you may remember me telling that in earlier posts). He asked me to remind him again who Rachel was taking lessons with. I told him CSA. He said if we decided we wanted additional lessons for her to give him a call, he would like to give them to Rachel for free. I asked him twice if he was serious and he said absolutely. By this time, Lisa had gone back to play the keyboards again and he came over and asked me if I had started her in lessons. We want to , but there is that pesky question of money. He told Lisa to try and learn as much as she could about the piano, he thought she had a natural gift of songwriting and the piano was a songwriter's best friend. We left shortly thereafter to take a walk around the little lake. Jeff asked me again if I was sure I had his number (His card has been hanging directly under our phone since we met him last summer). I said yes and he said please call...I plan to today! As we were driving home, Lisa got really excited and giggly. I asked her what she was so happy about...she said,I feel like a star, who is on tour. I said why, because you and Rachel keep singing and playing for people and she said Yes, I want to do this everyday of my life, it is so much FUN!

As soon as I can get some video tapes for our camera and I can figure out how to download a video I AM going to post one here for you to see/hear. And yes, says this proud Mom...to be only 8 and 12 they ARE amazing!

Rachel has a friend coming over this afternoon and then I will take them to choir ribbon class. David will be in the St. Patrick’s Day Parade tomorrow, riding/walking with the Fire Fighters, just as he did last year. He is looking forward to it. Christian will stay at school (Hi sweetheart, I love you)! I am going to continue to try and shovel through this messy house...it is difficult to clean when you are only here such a short time every week and are exhausted when you ARE home...oh well, at least it looks lived in (very MUCH so)!!!

---

Tuesday, March 15, 2011 5:09 AM EST

I honestly can't explain what it means to me to log on to Lisa's website and see that I have messages in the guestbook...it truly warms the heart after a very long day! THANK YOU each and everyone of you. Monday was one of those days where I don't get to eat until 11:00 at night (don't worry, I always make sure the children are fed)!

The day started off with the respiratory therapist arriving before Lisa had woken up. When she disconnected Lisa's C-pap machine, she set off some type of alarm, so she had to take it back to the office and return it just before we left for choir...Lisa needs it to sleep after all. Her settings look good and we will see the sleep neurologist today to see if anything needs adjusting. I don't expect any surprises.

After a morning of math and sign language class, I took Rachel to the MD. She is having more problems and the doctor had a lot of concerns Monday. I will just say again Rachel has a medical problem that she does NOT want shared with anyone. It has been all consuming caring for her since we returned from Philly and at times the intensity of care is like that of a newborn baby...her doctor's words, not mine. The MD appointment ran 45 minutes longer than expected and the doc was with me the entire time...she missed her own lunch time. We ran by home and got Lisa, she had a hematology appointment...Lisa doesn't care who knows anything about her, good thing too, since I seem to tell everything!

Lisa's INR was MUCH MUCH too high Monday, again. They had to prick her finger twice and she STILL had to have a blood draw, poor sweetie..she never complains though, what a trooper. BP was 163/96; however, after a 20 minute rest she was down to 138/86...we will take it. And yes, they took the BP before the blood draw. :) We will return on Thursday, they adjusted the coumadin slightly...say a prayer we get her back to therapeutic range soon! One more concern..she was up another two pounds since Friday, she is retaining water again.

We dashed home, I cooked for and fed the children (Lisa wasn't hungry), had the resp. therapist drop off Lisa's C-pap machine and took David to Pete so they could go to woodworking. Next stop, choir school for the girls. I always assist in the town choir, that way I am there if Lisa needs me. We got home around 8:30, I fed the children snack and put the girls to bed. I was FINALLY filling Pete in on the MD appointments of the day when Rachel's pediatrician called to check on Rachel (at 9:40 at night, wonderful doctor). She had been in contact with Rachel's 2 specialists and wanted to fill me in on what they had discussed. They will all phone conference today and one of them will call me tonight or I will find out what the plan is on Wednesday when I take her to one of the specialists. After a 20 minute call, we hung up and I finished sharing info with Pete. He was exhausted, he had an early morning at the hospital to get his blood drawn. I sent him to bed, washed the dishes, sat down to eat a peanut butter rice cake and finally relax. If your head is reeling, I don't blame you, so is mine! Thanks for reading to the end and THANK YOU to those who said hello! It was a day brightener. To those who didn't have time, BOY, do I understand! Thank you to all who visited , each person reading said a prayer, I know!


Monday, March 14, 2011 00:39 PM EST

I thought I would share a few photos of LIsa's Birthday. Thank you to all of you for the wonderful birthday wishes. I really need an extra person to help me get everything accomplished...I am sorry to everyone I owe emails, phone calls, letters, etc. There simply aren't enough hours in the day. I hope to give a better update soon, now that I am not as sick as I have been. Sorry, the pictures are out of order, you will get the gist though...Christian had to go back to school today, I miss him...

---

Thursday, March 3, 2011 6:51 AM CST

HAPPY EIGHTH BIRTHDAY
BEAUTIFUL PRINCESS LISA!!!

What an incredibly precious gift God gave us the day you were born. He promised us a life time of love if we believed He would care for you. We FULLY BELIEVE in Him to ensure your health will be good. The fact that you look, clinically and on paper to be quite ill, yet defy those odds and live your life to the fullest...well it can only be because God is in control and you have far more left to do before more surgery is required. He has always carried you through the roughest of times. At times things have seemed almost more than we could bear and yet He has been faithful in His love and care for you! Each day has been a gift, which we truly treasure and I have taken my promise to Him very seriously. I promised Him that when He spared your life (There was NEVER any question in my heart that He would pull you through all of the dark days we endured) that I would share your story with all that would listen. There are those who don’t want to hear the wonder and glory of God; however, I honor my promises and I promised God to shout HIs glory to all who could here. How could anyone doubt the power of our Heavenly Father, when they see his handprints all over your life? Never has a little girl been more loved by her family and friends! The pure love that shines from your heart can ONLY be explained by God, who lives within you!



I have shared this before, but some are new to your story so I want to tell it all again. When Lisa was born eight years ago, the most beautiful aroma filled the delivery room as soon as she was born. It was flowery and beautiful and it IS what I know Heaven will smell like when I finally get to go home to rest! I have only smelled that smell once in my life and it lasted for two days following Lisa’s birth. Her entire body emitted the aroma and people would enter our room wanting to know what the fragrance was called. I told them it was Heaven! I would bury my face in her hair, drinking in the pure joy of her.



As I ask every year, I have a very simple request that will not cost you a penny. PLEASE sign her guestbook on this very special day (and all month long if you miss saying it today). Wish her a happy Birthday please! She will be able to see these great wishes for YEARS to come! You know the daily fight we have for her health and to see her today is a testament to what God can do. Each word in the guestbook is a prayer, lifted in Praise. Lisa has many hard fights ahead of her with her multitude of health issues. Your words are such an encouragement to us, so please take the time to let us know you care!!


We have a busy morning at the hematology clinic, David and Lisa both have labs and the MD visit. Then we will travel to pick my Christian up from college for Spring Break, he will be home for a week and I am ECSTATIC! It also means he will be home to help us celebrate!

May your father and mother be glad; may she who gave you birth rejoice! ~ Proverbs 23:25

---

Saturday, February 26, 2011 8:06 PM EST

There are some extremely strong BELIEVERS who read our site and so I come to you and ask for prayers for 3 groups of friends in our lives.

The director at Lisa's former Preschool is a very special person to us (she is also named Lisa). She has been a strong prayer warrior through some incredibly tough times and, sadly, she is now experiencing one of the toughest times a parent has to endure. Her 13 year old son died in an accident Tuesday night. I will not share any other details other than the fact Lisa is devastated. I ask you to PLEASE pray for this family (they have two children in college as well). My heart aches... this is one of the happiest, most caring individuals I know.

The person who shared the news with me is another compassionate and caring individual who has used her tenacity to help us in a huge way. She is our friend who facilitated us getting our van. I love her and her family dearly. Her Grandfather died and she is in NJ today with her oldest son to attend the funeral. She adored her Grandfather and is heartbroken as well.

Yesterday I received more bad news in an email. I share a portion of it with you now: The S. family need your prayers. You may recall 39 years ago when Melisa (Missy) was born what a struggle she had as an infant and young child. She grew into a determined young woman, married, had two beautiful daughters. She even acheived her goal of becoming a nurse.The last few years have again been a struggle for her as her lungs and heart began to fail. Her Mom, Mary, called yesterday to tell me that "my baby has left me". She asked me to share that Melisa's memorial service and celebration of her life will be held this Sunday, Feb. 27 at 2:00 PM at *** Church. There will be a time for sharing memories and stories. As we grew up Missy had many health issues and I LOVED seeing her not let those challenges stand in her way. This loss hits home as well.

I had planned to attend the funerals today and tomorrow; however, Rachel and I have some viral "yuck" going on at the moment and are trying not to share with Pete, Lisa or David. Rachel feels really bad, I am not much better I realized as I drove David to Explorer's this morning. I think Rachel is right and we picked it up at the Preschool. Hopefully it will pass quickly and we will feel better soon. We are trying to have a low-key weekend, there was NOT any dog training or 4H for us, we don't believe in sharing germs when we know we are sick. David has a busy weekend, he had Fire Fighters Explorers today and he is working a shift at the Fire Station on Sunday. As an Explorer in Excellent Standing, he is eligible to ride along twice a month on a shift with a Fire Department of his choosing (He always picks the same station, same shift...he loves those guys and they love him). I always wish I could ride along...he sees a LOT!

Rachel's neurology appointment on Thursday went well, the neurologist added a new medication and now it is just a process to see if it helps her feel better. Lisa's INR (coumadin level) was way to high at the hematologist. I wasn't surprised, she has several large bruises on her right leg. I am almost as good as the machine, I can tell when she is low by the way she feels and how she looks when it is high.

Friday we had to add a pulmonology appointment for Rachel, her asthma has flared up and needed some guidance on which nebulizer treatments to start. I am happy to say her chest is feeling better this evening since she has had several treatments and we have her sleeping in the guest room, just in case...Lisa's lungs are fragile as well and we don't need the two sharing the same close air.

On a happier note, Christian called to say he was very excited, he is up for a job on the campus newspaper after writing an op-ed (opinion editorial) piece for one of his classes about Valentine's Day. He chose to write about the other reason we celebrate hearts on Valentine's Day...it is also Congenital Heart Defect Awareness Day, as you should know. They were so pleased how he took a different direction and the quality of his writing, his professor suggested he interview for the job. That interview happend today and he was on top of the world..that made me happy. Of course, I had already read the piece on CHD's, he loves to share things like that with me.

If you would PLEASE say a prayer for these dear ladies, and their families, who have suffered such tragic losses, I would be grateful.

Those who walk uprightly enter into peace; they find rest as they lie in death.~Isaiah 57:2

---

Wednesday, February 23, 2011 2:58 AM EST

If you missed any of the past months updates please click on journal history. The notification system has been unreliable lately.

Here is the letter that was written to TDI about Rachel:

To Whom It May Concern:

I contacted you recently about having a therapy dog visit the school in which I teach and you put me in touch with Judy **** in Charlotte, NC. I’m writing to express to you how wonderful Judy’s visit with her daughters, Rachel & Lisa, and their dog, Bandit, was. Rachel and Bandit were great with my students – Rachel taught them how to properly approach a dog, what therapy dogs do, how she got into working with/training Bandit, and she patiently answered each of their questions. Every teacher was amazed at how young she was, and we were all impressed with her comfort level speaking in front of groups and her knowledge about the therapy dog program and about dogs in general.

Judy, Rachel, Lisa & Bandit will be returning to my school on Monday and we’re all looking forward to it! Thank you for putting us in touch with Judy.

************************************************** **

Here is the email she sent to me:

Judy,

Thank you so much for yesterday – Rachel, Lisa & Bandit were all awesome. So many teachers came up to me yesterday afternoon and said, “I can’t believe Rachel is only 12! She spoke so well!” You really do have amazing girls and we feel lucky that TDI put us in touch with your family. I copied you on an email I just sent to TDI expressing how pleased we are with your service. I’m looking forward to seeing you on Monday – we got a little treat for Bandit.

************************************************** **

Hope you enjoy, I am incredibly proud of my children...this is Rachel's and Lisa's time to shine.

---

Tuesday, February 22, 2011 12:45 PM EST

There has been a lot going on here and I will not bore you with the details of it all. One problem I have been having is filling David’s medication for his migraines. I have been trying to fill it since January 23, without success. It has been "permanently discontinued". If you want to read more about the why, I am posting info below this paragraph. This has the potential to affect many drugs on the market today. I have no idea what we will do, this medication works WONDERS for him and there isn't ANY alternative/comparable med ...David has used this successfully since 2005...Praying for FDA approval to happen quickly. Rachel is seeing his neurologist for the first time on Thursday and I will see what she suggests. I KNOW there isn’t anything else available, we had been paying out of pocket for it because our insurance refused to pay for it...

The FDA explained that this drug was introduced before the current drug approval process was put into place. So other medications like it aren't really generics; they're other medications with the same ingredients. The issue with all of these medications is that they have never been approved by the FDA. It's rather confusing. Here's how the FDA explains unapproved drugs on the market:
What are unapproved drugs and why are they on the market?

The original Federal Food and Drugs Act of 1906 brought drug regulation under federal law. That Act prohibited the sale of adulterated or misbranded drugs, but did not require that drugs be approved by FDA. In 1938, Congress required that new drugs be approved for safety. In 1962, Congress amended the 1938 law to require manufacturers to show that their drug products were effective, as well as safe. As a result, all drugs approved between 1938 and 1962 had to be reviewed again for effectiveness. To be consistent with current regulations and to ensure that all drugs have been shown to be safe and effective, all new drugs are required to have an approved application for continued marketing.

Many healthcare providers are unaware of the unapproved status of drugs and have continued to unknowingly prescribe them because the drugs’ labels do not disclose that they lack FDA approval. In addition, since many unapproved drugs are marketed without brand names and have been available for many years, it is often assumed that these unapproved drugs are generic drugs. This is not correct. Generic drugs have been evaluated and approved by FDA to demonstrate bioequivalence to a brand name reference drug. Healthcare professionals and consumers can be assured that FDA-approved generic drug products have met the same quality, strength, purity and stability as brand name drugs. Additionally, the generic manufacturing, packaging, and testing sites must meet the same quality standards as those of brand name drugs. Unapproved drug products have not been evaluated and approved by FDA. Unapproved drugs are not generic medications, and neither their safety nor their efficacy can be assured.
What it all boils down to is that any pharmaceutical company that wants to manufacture an unapproved drug must invest millions of dollars to prove the efficacy and safety of the drug and submit an application for approval to the FDA. The manufacturer which has made this drug for over thirty years without problems is attempting to jump through the hoops to have it approved. I hope they hurry, David needs it!

David had an IV iron infusion last week, so he is pepped up. I call it his liquid gold, it perks him up so much. Lisa's BP was much too high and her INR was slightly low. We are "waiting and watching" and will return later in the week to check if she is back to a therapeutic level.

Rachel also has an MD appointment tomorrow, one Wednesday and will see the neurologist on Thursday for the first time. Lisa recently saw the GI doctor for an exacerbation of her reflux/nausea. Medications were adjusted for both of them. Lisa sang at her choir's church on Sunday. We are not member's at the church where Rachel and Lisa sing. I invited several people; however, no one came. The choir did a marvelous job and looked beautiful/sweet in their vestments. I always feel so proud, I help in the class every Monday night (and any other time they need me) and know these girls quite well.

Lisa's new wheelchair was delivered this past Wednesday and it was a blessing to finally receive it! Lisa was much too big for her old W/C and it isn't comfortable. I thought about trying to sell the old one (it is in amazing condition); however, we put it in Pete's car for a back-up...he often takes the W/C out of my car and forgets to put it back...it is too small which is my only worry about that....

Last Thursday and yesterday (2/21) Rachel and Lisa took Bandit, to a local preschool. They had requested a visit from TDI for a therapy dog and we were happy to help them out...it is always fun for the little ones to see a dog, especially one as gentle as Bandit. Rachel taught 9 to 10 classes both days about God’s love, how animals take care of us, what a therapy dog does, what her role is, how she decided to be a handler and the multiple tests and training they passed. She did an AMAZING job and I was incredibly proud of both her, Bandit and Lisa. Lisa fell in love with the littlest students and made a little friend in the one year old class, it was precious If I can find a moment I will post photos...There were 231 students! That is a lot of education going on, and they were so sweet! They even gave Bandit, Rachel and Lisa gifts today...totally NOT necessary, but very sweet none the less. It was a 40 minute drive one way...but we had such a good time, we were sad we weren’t going back later this month. They have already asked if we could return next year and Rachel readily agreed. They also wrote the most flattering letter to TDI to let them know how wonderful Rachel and Bandit were!

One more bit of bragging. We received the brochure for summer camps for Community School of the Arts and guess who was gracing the cover...RACHEL! What a surprise, we had no idea! I had actually brought the mail in on Friday, lying it on the table not having time to look at it. I told Rachel it was there if she wanted to check out the info on Jazz Camp. The first thing she said when she picked it up...hey, it’s me! Monday night at choir several of the girls came in with their brochures to share she was on the front...it made her feel SO good!

I am tired and want to get something posted, so this is it for tonight. I will post about Pete’s MD later. THANK YOU to everyone who has been concerned and who has left such incredible words of encouragement! Angela, I had to say to you...I am not sure I deserve your very kind words; however, it really made me feel good and I appreciate it...I appreciate EVERYONE’S concern, THANK YOU! Christian hasn’t been home for several weeks; however, I had a good conversation with him last night. He will be home the day after Lisa’ birthday for a week (Spring Break). To my dear friend Lynn...Happy Belated Birthday...I love you sweet friend and I am glad it was a fun time!

Praise the LORD, my soul, and forget not all his benefits— who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion. ~Psalm 103:2-4 

---

Sunday, February 13, 2011 2:33 AM EST

PLEASE CONTINUE TO PRAY! I realize I haven't had a real update in almost two weeks; however, it is overwhelming here. I know a few of you have been by, Thank you for the messages and the prayers. I have NOT written Thank you notes since Christmas...those who know me well realize that is uncharacteristic of me. I am sorry, I don't have time to even go to the bathroom, so I do hope you will understand about unreturned emails. I am doing my best.



Monday, February 7, 2011 4:17 AM EST



Sometime during early pregnancy, a baby's heart may not form properly, resulting in structural abnormalities known as Congenital Heart Defects. In many cases the cause is unknown. No one is to blame. The parents didn't "do something" wrong.

It is estimated that 40,000 babies with Congenital Heart Defects (CHD) are born in the United States each year.

Although some babies will be diagnosed at birth, newborns are not routinely screened for CHD. The consequences of a late diagnosis can have serious, lifelong implications.

CHD is the MOST frequently occurring birth defect, and is the leading cause of birth-defect related deaths. Nearly 1,800 infants with CHD die each year as a result of congenital heart defects.

Some CHDs may require visits to a Pediatric Cardiologist. Others can be treated with medications or repaired with surgery and/or procedures.

Complex defects may require several surgeries and are NEVER really "cured".Families face financial devastation/ruin/bankruptcy as they seek care for their children. Care that should be provided to all, because CHD's ARE treatable and these children can go on to live happy, productive lives, with the proper ongoing treatment.

The majority of patients born with congenital heart defects are now adults, yet many adults with CHD are not receiving adequate ongoing care from trained specialists.

Why should you care? (From the Congenital Heart Information Network website)

Congenital Heart Disease is the most common birth defect, and is a leading cause of birth-defect related deaths worldwide.

Despite the fact that CHD affects approximately 1.8 millions families in the U.S., a relatively small amount of funding is currently available for parent/patient educational services, research, and support.

By sharing our experiences and providing information, we hope to raise public awareness about conditions that affect approximately 40,000 babies each year in the United States alone.

It is our sincere hope that efforts to educate the public will result in improved early diagnosis, additional funding for support and educational services, scientific research, and access to quality of care for our children and adults.

Tuesday, February 1, 2011 11:35 PM EST

Cardiology update: There is NO change from Lisa's last ECHO done in Philly in December ...YEA! So why the weight gain...the theory is when she had the Flu and Strep Throat just after Christmas, the viral component of the illness made her entire system "out of sync". Children who have had open heart surgery often take much longer to recover from viral illnesses and he feels that is what has happened with Lisa. Lisa has autonomic issues (also known as dysautonomia), diagnosed in September 2008. This could also explain the fatigue and fluid retention. He discussed changing her autonomic medication around; however, in view of the fact she often has increased BP, that is a horrible plan (these meds. can increase BP, so to go up on her dosage is not a wise decision). For the moment, we are still in a wait and see holding pattern.

The visit DID give me an opportunity to discuss in detail the plan for Lisa's next open heart surgery. Clinically, Lisa looks bad on her ECHO, per all of the cardiologists (locally and at CHOP). She SHOULD require surgery at this point in time, both on her pulmonary stenosis and to replace the mitral valve. However, symptomatically, she is still doing well, able to manage to do all of her activities, even if they are a bit modified. They have no explanation for this, citing that sometimes a child looks great clinically and presents too weak to get through a day for some reason, and occasionally they look really bad on paper; however, are defying the odds and able to hold off on surgery for a little while longer. Per the doc, we have no idea why or any explanation. I quickly told him I had one...God is powerful and everything is in HIS time, not ours! The plan is to continue to ECHO her every few months and monitor her activity/energy level/symptoms.

Lisa’s INR at the hematologist today was ...PERFECT! Just exactly within therapeutic range, which is SUCH a blessing, Yahoo! David’s ferritin was a bit low, so he will get IV iron on Thursday after his dermatology appointment. We saw one of Rachel’s specialists today and she thinks she is improving some; however, her medical issues still have a ways to go. The good news is, we are to continue to let her participate in her activities as she feels strong enough. I appreciate those who have NOT asked me what her specific medical problems are...sometimes when you are a 12 year old girl, you don’t want the world to know all about your health problems.

I was unable to post yesterday, we were busy after our LONG cardiology appointment. David had woodworking, the girl's had music class, then choir. Today we had three MD appointments, the girls had music class, David had aviation explorers and Rachel had guitar...Tomorrow will be better, only 2 MD appointments, Lisa has ballet and Rachel has theater...I am just happy we don't have ice or snow and the girls are feeling like doing their activities! (((((HUGS))))) to our friends who are dealing with weather related problems!

That is enough of boring you with our day, I hope all of you are having a great week and feel the Blessings of God in your life.

---

Saturday, January 29, 2011 1:44 AM EST

The good news is: So far all of Lisa's lab work and tests are coming back WNL. The bad news is: WHY is she so swollen/retaining fluid. We will find out Monday if there are any changes to her heart since we took her to CHOP in December. In the meantime, Rachel has had a slightly better day, Praise God. We are waiting on Pete's lab work from Wednesday. We are both eager to talk to his specialist in February and see how these new medications are working for him. I would LOVE to see that his brain lesions aren't growing! On a happy note, David denies any problems at the moment. I will take what I can get and be happy, it can ALWAYS be worse (and it has). Christian isn't coming home this weekend from college (haven't seen him in several weeks). He has a lot of work to do; however, I don't blame him from staying away from all of the medical stuff...If I could get away, some days I would.


Thursday, January 27, 2011 8:44 PM EST


We were at the hematologist office a lot longer than planned (3 hours~they wanted to see if resting would improve her BP. It did). Lisa's INR (coumadin level) was quite HIGH this time (it is always a balancing act with coumadin, especially to keep a valve in the heart flowing). Her BP was better, 128/88 which I was happy about. Not great; but better. Our biggest concern at the moment is the fact she appears to be gaining weight...quite a lot and she has not changed her diet. Since the end of December she has gained about 8 pounds. Since last Friday (January 27) she has gained 1.4 pounds. It appears to be water weight, her little face looks swollen, as did her feet, legs and tummy. There were several phone calls back and forth between the cardiologist and TWO exams by the hematologist. They had already checked Lisa's blood for her INR; however, they decided that additional blood work and a urinalysis should be done. She was a trooper though, never complaining about the extra poke. On the bright side, her CBC looked good, now we will just wait on the results of everything else. The cardiologist wants Lisa to come in on Monday for an exam, EKG and an ECHO. It has put a pit of worry right in the middle of my stomach. Rachel isn't well today either. Please keep us in prayer.



Wednesday, January 26, 2011 3:54 AM EST


The Van IS working :o), the computer is NOT, it is going to the shop today...again, Rachel is ill, Lisa's BP has been sky high and we have been to three MD's to check it out, her INR is too low, David is a huge help and did NOT need IV iron this week~Praise God, Christian had some trouble procuring a ride to one of his classes they decided to hold 5 miles away from campus (resolved yesterday), I am flat broke, our refrigerator is still leaking, I am exhausted, I have over 200 emails to answer, I never get warm, we had to postpone Lisa making her wish for May...I think that is enough cheery news for the day.

I appreciate those who have taken the time to sign in and let me know you are still here praying.

---

Tuesday, January 18, 2011 3:49 AM EST

I had to take Christian back to school Monday, already a sad time. We got in the van (yes, my new one). I put the key in the ignition and the van would NOT start. It turned over fine, it just wouldn’t start. I tried multiple times...nothing. I called Pete, to see if he had any suggestions, poor thing he had nada. I took the children back in the house, it was cold. I went back out and tried intermittently for 45 minutes to start the van while I waited for Pete. He showed up, looking disgusted...I can’t tell you how many times he has had to leave work to help me with car trouble. We looked under the hood, everything appeared to be fine. He tried the van over and over and FINALLY as I stood in front praying and he sat inside praying, it started! I wanted to cry with relief, because I had a lot to do yesterday and children to get many places and was already an hour behind...Pete went back to work (unable to run the errand he had planned to run at lunch, because he had to come home and help me instead), we got back in the van and proceeded to take Christian back to school. I was so scared to turn the vehicle off when we arrived; however, Rachel HAS to eat on schedule and it was too cold to stay outside...and we aren’t eating in the new van, I haven’t even had it a month yet! We got back in the van and thankfully it started. I called Pete and asked him to call sweet Jessy at the dealership and see if I could bring the van by in the AM. She said I could bring it on my way back from HPU, so that is what I did. (Thank you Jessy)! We were at the dealership for around and hour and they put it on two different machines to test it out...of course, everything tested well and started just fine. The theory was maybe the battery was low; however, the drive to HPU strengthened it...of course, for the battery to have been low something would have to have been left on or open and it wasn’t...when we parked the van Saturday we didn’t drive it again until Monday...and that van had PLENTY of juice when I TRIED to start it...so who knows WHY it wouldn’t start...Maybe I avoided an accident...at least that is what I said to the children to calm them down. I confess, it caused a great strain to my day with the added lack of time/worry. Plus, last night as we walked to the van after choir (It is a small walk from the church across the street to the parking deck, then I have to load Lisa and the wheel chair so it gives me lots of time to worry...I mean think). I was praying the entire way, hoping the van would start. Thankfully it did...and yes, I STILL love my van! I think it is just my lot in life to have to deal with stuff. I just hope and pray that I don’t get stuck again!

I had to put some things off till today and I already have a lot to do...doctor, bank, pharmacy and more...David needs his Firefighter pants to be smaller, he has lost so much weight since he was fitted last year, so we are off to the uniform store (over and hour in travel time, sigh. They fit them during Explorer’s this year; however, they got the size wrong, altering them after they left and the Captain picked them up). I also need to see about getting David’s medic alert bracelet fixed, the clasp has broken. We took it to a jewelry store Saturday and they couldn’t repair it and it was $137 for a new lobster claw clasp...evidence the price of gold has skyrocketed and I need to find another alternative to get it fixed. We also need new handicap tags for the van for Lisa, ours expire at the end of this month. Pete is doing that for me, if all goes well when he turns the tag in for his car...someone was teasing me asking what I was going to do with the extra money we made from selling his car...after we paid for the car repairs from December we had almost 11 dollars left over...that will pay for the handicap car placards with a dollar to spare! Rachel has ribbon class tonight and a makeup guitar lesson, if she is up to it (she is eager to start all of her activities and if she feels okay, the doctor says she can). David has aviation explorers. Lisa gets to rest, her choir teacher will not have the extra classes tonight...Lisa was exhausted at the conclusion of choir last night, poor sweetie, Rachel was just thrilled to be there, although she was tired as well.

I hadn’t planned to update; however, since the van was on my mind and I couldn’t sleep anyway, I thought I would ask you to keep that in prayer.

Praise be to the Lord, to God our Savior, who daily bears our burdens. ~Psalm 68:19

---

Saturday, January 15, 2011 6:00 AM EST

Before I start this update I want to apologize to anyone whom I owe a Thank You note. Lisa and Ashley...the children LOVED their goodie box of ducks to add to their collections, THANK YOU! They have had fun trading them! Dear Carol, That was a BEAUTIFUL letter you sent me, Thank you so much...you have also been a blessing to our family and you may spoil the girls as much as you choose, they love you! To everyone who is still visiting Lisa’s site, THANK YOU as well. There were some technical issues this week and some of you were unable to log on. In addition, it seems an email went out stating I had updated...of course, it was from January 5...not January 11 when many of you received it. So please continue to check in if it appears I haven’t updated...I might have and the notices are lost in cyberspace.

Without breaking Rachel’s request for privacy, I will say that her recent health issues have required a great deal of adjustment/expense on our part. She is requiring special foods, medications and treatments (very expensive, lengthy and time consuming for me) and lots of care by me. The schedule has been exhausting. It also adds 2 to 3 extra MD appointments each week...She was feeling better earlier in the week; however, began to be ill again on Thursday night and when we saw her MD yesterday she thought she had something ELSE brewing...I could use some prayers for ALL of the family and a resolution to her health problems. She has multiple issues that have been secondary to the Mono she had in February, and quite frankly it is wearing on us all. She had to miss choir, guitar and theater Mon, Tues. and Wed. d/t to the weather and then she had to miss choir last night and 4-H today because she is ill. Specific prayers for her health are needed please

Yes, we had snow, then ice on top of everything else this week. I do NOT like the ice...you can't drive on ice, as evidenced by all of the accidents around town...our driveway is still a solid sheet of ice! As I took Lisa to speech on Thursday, (Wednesday during the afternoon was fine to drive to ballet, coming home after the sun went down, not so much) there was some harrowing moments in our neighborhood (The secondary streets STILL have lots of ice as well). I made the mistake of taking the shortest route Thursday and we encountered the entrance frozen solid (for about 1000 feet, you couldn't tell until you were on the ice), from curb to curb..several cars had jumped the curb and were stuck and as I slowly tried to drive on this ice rink (there was no way NOT to. A school bus (school had been delayed for the morning) tried to drive inappropriately and was sliding towards my stopped van (yes, my NEW VAN!)...2 of us who were patiently waiting for a safe exit literally had to roll our windows down and try to instruct her how to NOT slide in to us. I finally got her to STOP trying to drive, so I could proceed through (she was trying to drive around a car whose wheels were spinning in place)...I was worried for the children on the bus with such a driver...as I tell people all the time, you can't drive on ice...hence the mad dash to the store to get milk and bread BEFORE a snow event. Lots of people move here from other places and are used to snow and laugh at those of us who prepare...first, our city isn’t equipped for these events, because it IS rare and they don't realize we OFTEN get ice vs snow. It only takes one experience without the food you want/need to make sure they are prepared the next time wintry weather is called for. As for me, it was a GREAT excuse to check out from the daily rounds of MD/therapy appointments...of course, with all of Rachel’s additional needs the time was far from relaxing.

Lisa woke up Wednesday not feeling well herself; however, some medicine and TLC and she was able to go to ballet class. She made it through 40 minutes before she had to take a short rest and then went back for the last few minutes. Her INR was good at the hematologist, so we were Thankful. She and David will go back next week for labs and possibly IV iron for David...he was so bummed Wednesday, they canceled engineering. He had built a catapult (they could NOT use nails, screws, etc) and he is eager to compete with his friends to see whose was best.

We drove to HPU to pick Christian up yesterday afternoon. He has a 3 day weekend, so we wanted to take advantage of it and enjoy his company before things became too hectic for him to come home. He has had no success on the scholarship front...This is one more burden he definitely didn’t need...if only I was rich, instead of beautiful, lol! I am sure he feels what is the point of making excellent grades, it doesn’t help or relieve the stress of paying for school.

On a better note, I placed Pete’s car on Craigslist yesterday (I actually put it up Sunday; however, took it down early Monday in view of the weather). We sold it last night to a nice gentleman. I got worried, thinking the paperwork wasn’t right; however, Pete verified with a nice guy at the dealership (they really have been great and I am embarrassed to say I haven’t thanked them properly yet...my goal for the weekend, if Pete can help me some with Rachel) the car now belonged to the gentleman who owned it. Pete even called him back from the van as we drove home because I was worried (he was so patient with us :o) and Rachel and I heard him say the car now belonged to the new owner, that we could cancel the insurance and turn in the tags...woo hoo! Such a relief! Now I can pay for the brake work the Stanza needed in December!

Thank you for stopping by...as always, things could be better; however, they have definitely been much worse!


God’s voice thunders in marvelous ways; He does great things beyond our understanding. 
He says to the snow, ‘Fall on the earth,‘ and to the rain shower, ‘Be a mighty downpour.’ 
So that everyone He has made may know his work, He stops all people from their labor. ~Job 37:5-7

---

Sunday, January 9, 2011 1:46 PM EST

Christian is on his way back to college, I am very sad. He has a meeting to speak to the powers that be about that missing scholarship tomorrow. Pete and I would have liked to join him; however, we are expecting another blast of wintry weather and I will have to figure out appointments/therapy/etc if that should happen. I don't know what good it will do for him to meet tomorrow; however, if he doesn't get this scholarship balance of $2,500 for this school year, his senior year looks very iffy...Pete and I simply have no resources left, we have pulled out every stop and it still isn't enough. Praying he gets the on campus job he has been working on for so long and that he will be chosen as an RA for next year. We will not be able to see him much; however, at least he might be able to graduate.

About Pete's car, I left a message with Make a Wish on Friday to see if they would take it as a donation...I just got a call back, it is too old and decrepit for them, lol. They said it nicer than that; however, that was the bottom line. I don't blame them...still up for grabs if anyone needs a car and is handy....

Saturday, January 8, 2011 3:26 AM EST


Anybody need a car. Pete's didn't sell...again...I am not surprised...If you need one, let us know, we can help you out...I have nothing else I want to share, it isn't good anyway.

Thursday, January 6, 2011 10:26 PM EST


I completed appointment number 19 of the week at 4:45 this afternoon. This has definitely been a record breaking week for me...multiply that number times all of the co-pays and medicines...you do the math...Pete had no cavities at the dentist...YEA! (I didn't count his appointment in my total because I didn't have to go to it). Lisa's INR was within range, another YEA! (I take what I can get to be happy). No changes to her meds. from the pulmonologst, although he added the diagnosis restrictive lung disease, for some reason that bothered me, although it doesn't change anything...he wants to talk to Lisa's GI doctor, he is completely against him taking the feeding tube out in the spring, since we use it for hydration, supplemental nutrition when she is too ill/weak and to keep her out of the hospital. He used her flu this past week as an example of WHY we shouldn't remove it, definitely something more to think about. I was looking at it as a step forward in her progress, he thinks it would be a huge mistake since she already has the PEG. He wouldn't recommend placing one for those reasons; however, since she has such great success with it, he wants to advocate for her to keep it. I am too tired to know what I want, Thankfully I don't have to decide for a few more months! The pulmonologist changed a few of Rachel's meds. around, her PFT's didn't look great. Hopefully that will enhance her lung function so that her lungs will heal from her pneumonia. Christian received a letter yesterday stating one of his scholarships for $2,500 could not be funded for the Spring Semester...I really am weary of this economy! School starts back Tuesday, any suggestions? I paid out almost half that this week in copays...signing off before I start a pity party...I truly AM Thankful for my blessings!

Thursday, January 6, 2011 5:50 AM EST

I don't know why; however, the update notification system is still not working. Please check in periodically if you would like to see if I have made any updates until they fix the problem. Thank you.

Wednesday, January 5, 2011 11:10 PM EST

Nothing good to report so this will be short. TURMOIL is the word of the week. Today was an easy day, only two MD appointments. Both Lisa’s MD and Rachel’s MD did not want them to go to Ballet and Theater, respectively, so we had the night off. All three of the younger children are still not well. Tomorrow is speech, pulmonologist for Rachel and Lisa, then the hematologist for Lisa (her INR was sky high Monday; although that was not unexpected). Pete sees the dentist at 4.

If I owe you a thank you, email or phone call I will try to get to it soon. As of today, we have had 15 appointments thus far this week. I know you will understand, otherwise you would not be checking in on us. Christian has been such a HUGE help this week, the children have loved having him here for many reasons, not the least of which was so they didn’t have to tag along everywhere. David told me as I headed out for Rachel’s appointment after lunch that it brought him great comfort to know I was in a safe vehicle that would start.

All the days of the oppressed are wretched, but the cheerful heart has a continual feast.
Better a little with the fear of the LORD than great wealth with turmoil.
Better a small serving of vegetables with love, than a fattened calf with hatred. ~Proverbs 15:15-17

---

Sunday, January 2, 2011 10:15 PM EST

I just heard from my friend J, Pete's car didn't sell, there weren't very many vendors at the auction on Wednesday. Prayer warriors, please lift this up for me. I need this car out of my name ASAP!

David, Rachel and Lisa were all fever free today, although David and Lisa are still quite weak. Rachel, is sightly stronger. Christian is hanging in there, he has been such a huge help as always. He has one more week at home before he goes back to school, I wish I could escape with him. I feel as if I have barely seen him with all that has been going on, this has absolutely been my worst holiday season since Pete was gone to the Gulf War when Christian was an infant. We are almost back to normal around here, putting most of the decorations away today...I confess, Pete and the boys did most of it, while I took care of medical things. Everyone is in bed, except me, I have to gather medicines, snacks, drinks, etc, for our very long 9 appointment day. I am THRILLED we made it through Day 2 of the New Year without a hospital visit, Thank you God!

No, dear brothers and sisters, I am still not all I should be, but I am focusing all my energies on this one thing: Forgetting the past and looking forward to what lies ahead, I strain to reach the end of the race and receive the prize for which God, through Christ Jesus, is calling us up to heaven. ~ Philippians 3:13-14


Saturday, January 1, 2011 8:00 PM EST


Reflections on a year just passed...Broken bones, ER trips, OR trips, hospital stays, mononucleosis, along with complications, BIRTHDAYS, the flu, multiple car repairs/bills for the van and car...just as many times of being stranded, a NEW VAN, medical trips out of town for Lisa, Pete and David, FAMILY SUPPORT, scholarship troubles for Christian, an UNNAMED BENEFACTOR MAKING UP THE SHORTFALL, multiple missed school days, CHOIR TOUR, fights with insurance companies, AMAZING PERFORMANCES BY ALL OF MY CHILDREN, multiple therapy appointments, INCREDIBLE FRIENDS, unnamed new medical diagnosis for Rachel, with ensuing exorbitant medical bills not covered by insurance, VISITS WITH AND FROM GRANDPARENTS, 4 of the 5 meds Pete was prescribed December 1 NOT being covered by insurance, KINDERGARTEN GRADUATION, strep throat for Lisa 7 different times, averaging 6 MD appointments weekly and 4 therapy sessions weekly, UNEXPECTED SURPRISES, Lisa’s leg brace, BANDIT AND RACHEL/THERAPY DOG AND HANDLER, medical bills far surpassing what we owe on our house, exhaustion, WONDERFUL PEOPLE WHO TRULY DO CARE...thinking at one point 2010 was our worse year...THEN REMEMBERING TO COUNT OUR NUMEROUS BLESSINGS, so I stopped reflecting...

Thursday brought MD appointments for Lisa, her coumadin level was slightly low and her fever was still high. We will return on Monday to the hematologist. Lisa and David have neurology appointments that morning, Christian, David, Rachel, Lisa and I have dental appointments right after lunch, then we go straight to the hematologist for David and Lisa to see the MD and have labs...it will be a new personal record...nine medical appointments in one day (Our previous best was 8 in one day). David, Rachel and Lisa are all still very ill, Praise God Pete and Christian have not gotten sick! Tuesday Rachel and David each have MD appointments and if they are well enough Rachel has guitar and David has aviation explorers, Wednesday Lisa and Rachel each have MD appointments ,and Lisa has ballet, Rachel has theater. Thursday Lisa has speech, Rachel and Lisa see the pulmonologist and Pete goes for his dental appointment. He is lucky, he actually gets to go to the dentist and relax...that sounds funny, doesn’t it? Relaxing at the dentist (yes Marian, it looks as if I really HAVE lost my mind, I am beyond stressing at the moment, lol. Didn’t you say that would be a sign I had lost it completely? I guess I have. Prayers being sent up for your son)!

We don’t know yet if Pete’s car sold at auction, I sure hope so, I wanted it out of my name so I wouldn’t have to pay 2011 taxes on it and I want to cancel the insurance. Pete got his van back late Thursday night and while the bill was exorbitant for us, it was FAR less than it could have been. The Toyota place has been so good to us and we are so appreciative of that fact! (We love all of you~ Jessy, J&K and W and all of the others who helped us. What a BLESSING my new van has been to get us all where we need to be...and know I will actually get there)! SO MANY of our friends continue to be plagued with vehicles that are breaking down, BELIEVE ME when I say we are INCREDIBLY HUMBLED by our blessings. If you have healthy children and spouses, be THANKFUL! Things do NOT make up for that, they only help ease a bit of the burden. It is good for everyone to remember that we have no idea what another person is going through, because each situation is different...

PRAYERS THAT 2011 WILL BRING A HEALTHIER AND WEALTHIER TIME FOR US ALL, DEAR FRIENDS!

Prayer for New Year

The new year,
like a new born child,
is placed in our hands as the old year passes away.
The days and weeks to come are God’s gift;
they carry God’s blessing.
As a blessing we welcome them.
Our hope for the year ending is that
all that was good in it remain with us and
all that was harmful be left behind.

Bless us, O Lord,
and bless the time and seasons yet to come.
Teach us to number our days aright,
that we may gain wisdom of heart.
And fill this new year with your kindness,
that we may be glad and rejoice
all the days of our life.

I will look on you with favor and make you fruitful and increase your numbers, and I will keep my covenant with you. You will still be eating last year’s harvest when you will have to move it out to make room for the new. I will put my dwelling place among you, and I will not abhor you. ~Leviticus 26:9-11

---

Wednesday, December 29, 2010 8:33 PM EST

I am exhausted. Still driving Pete to work, plus we had to add an extra MD appointment for David who woke up with a raging temp of 103.2...he has the flu! (Confirmed by testing). Our regular pediatrician was off today, so I saw the newest partner. She put David on Tamiflu and started Lisa on it as well, in view of her health history, her symptoms and her fever only being slightly better today. She said they were getting false negative readings on some of the children who had the flu shots and feels certain Lisa has the flu to go along with her bronchitis and junky lungs, even though her test showed negative results. Yes, you can get the flu, even if you have had your shot, it is usually not as bad though...tell that to those who are sick! She didn’t want to start Rachel and Christian on prophylactic treatment (our regular pediatrician would have). I got the children back home, fed them lunch then ran to pick up the meds from the pharmacy...my sweet pharmacist was getting it ready as I ran in...she has had to fill meds for me four different times this week! I dashed back home, medicated David and Lisa, then Rachel and I drove across town to HER MD appointment, which took almost three hours. That doctor decided to put her on Tamiflu as well, in view of her pneumonia, so it was home to cook dinner and BACK to the pharmacy! Thank you God (and J,K and W) for my VAN! Now if we can just get Pete back in a vehicle, we already KNOW that is going to be several thousand dollars MORE this week, after even more copays than usual for MD’s and Meds...and the Tamiflu was SIXTY dollars a person (plus three MD visits). Tomorrow Pete needs labs at the hospital at 7 AM, so I will take him to get his blood work done, then to work and back home to see what adventures the day holds... Yes, I am trying to keep my sense of humor...I have already lost my mind...

Thanks for continuing to keep us in prayer, we need it as much as ever! The new van helped some of the transportation needs, there are still MANY more needs with a family who has so many medical maladies! Thanking God for my blessings, I am still counting them all!

If you fully obey the LORD your God and carefully follow all His commands I give you today, the LORD your God will set you high above all the nations on earth. All these blessings will come on you and accompany you if you obey the LORD
your God:You will be blessed in the city and blessed in the country. ~ Deuteronomy 28:1-3



Tuesday, December 28, 2010 7:58 PM EST

If you missed the incredible Christmas Miracle, please click on the journal history.(ML, I am 5 ' 7 "...I look short because my children are TALL)! Several of you told me you just skimmed the update, because I had so much information in it and you were anxious to get to the news. I invite you to go back and read it, absorbing the miracle that it truly is...God is amazing and He is always Faithful, even when things look bleak. I LOVE my van and I am getting LOTS of opportunity to put it to use this week! We are down to one car, because my old van is still in the shop, waiting on expensive parts and Pete’s car will be sold at auction (we hope!) on Wednesday (we will hear on Friday how that turned out...just in time to get it out of our name for the new year). While it is the best thing to do (the van is 19 years old, after all), it is bittersweet...we have had “The Scarlett Pumpernickel” since Christian was 1...I used to drive it between NC, SC, Virginia and Tennessee when I worked for the Infusion Company, and it became Pete’s car in 2000 when we bought my Quest second hand. It has been a great car; however, it is time to say goodbye. So in between all my regular MD appointments, pharmacy visits, therapy sessions and the added MD appointments and Pharmacy visits, I am taking Pete back and forth to work. It is all getting accomplished and that is what counts!

Lisa is VERY sick. She saw the pediatrician today...her fever is high averaging 102 to 103.7 when the Tylenol wears off (she can’t have Motrin due to her artificial valve). The chest X-ray didn’t show pneumonia YET, per the MD however, she was quite concerned with the way it looked anyway and has started her on two antibiotics due to the congestion and cough (bronchitis). We have to be doubly careful because of her heart. We will return on Thursday to see how she sounds/looks, unless I need her to be seen before then. Rachel is still recovering, although she looked better today, especially in comparison to Lisa. David is also quite ill with a high fever, sore throat, congestion/cough. Dr. S said because he was stronger, he could wait a bit longer to see if he could fight things off on his own...which is exactly what he wanted to do, so that worked out well. If he isn’t better by Thursday, I will have to take him in with Lisa. Thankfully, Christian and Pete both seem to be fighting it off...I hope that continues! Pete’s family sent us an edible arrangement today, so we ate the delectable vitamin filled fruit, in hopes of building up our immunity...Thanks everyone!

Thank you for all of the supportive GB messages and for those who are genuinely happy for us...it means a lot! God is GOOD and He is Faithful! I hope you enjoy the Christmas photos, I had to share Jesus Birthday cake, so many of you enjoy that tradition we began when Christian was a tiny little boy.

God is Faithful, who has called you into fellowship with His Son, Jesus Christ our Lord. ~1 Corinthians 1:9

All the cousins on my side of the family at my parents house, December 24, 2010.




We just finished decorating Jesus Birthday Cake.




We want to eat it Mom!




It smells GOOD!





Notice my BELIEVE in the background (top of the picture). My friend Caron sent it to me several years ago and I keep it out year round since it is one of my Mantras.




Getting ready to sing Happy Birthday to Jesus! After all, He is the reason we celebrate! December 25, 2010








The front of our house on December 26, 2010...it was still snowing. As you can see, we didn't decorate much this year.




Our backyard was becoming a Winter Wonderland.

---

Sunday, December 26, 2010 10:55 PM EST

The word miracle is often used in a very casual way when describing an event that is a bit out of the ordinary. I challenge you to remember the word within the context of it’s definition...we have experienced a few miracles in our life, the biggest being Lisa’s incredible life and survival...the story I am about to share, while it might not fit some peoples definition of the word, certainly fits mine...because the events are definitely Supernatural, if you BELIEVE! I guarantee you this doesn’t happen every day!

MIRACLE

1.an effect or extraordinary event in the physical world that surpasses all known human or natural powers and is ascribed to a supernatural cause.
2.such an effect or event manifesting or considered as a work of God.
3.a wonder; marvel.

Now faith is confidence in what we hope for and assurance about what we do not see. ~Hebrews 11:1 

I want to preface this by saying I know God doesn’t need any help to perform miracles; however, He often utilizes those around us to effect what He wants to happen. We have been Blessed with some very kind Angels in our lifetime, touched and led by God, my Lord and Savior. God has been working overtime, as you are about to read...

I loved this song when I was growing up, the tune was quite “catchy.” As I got older, it made more sense. It is from the movie Twas The Night Before Christmas (1974) Which you may remember I watched last Sunday night...a significant date....

Even a Miracle Needs a Hand

Miracles happen most every day
to people like you and me
but don't expect a miracle
unless you help make it to be

You hope while I hurry
You pray while I plan
We'll do what's necessary cause
Even a miracle needs a hand

You love and I'll labor
You sit while I stand
Get help from a next door neighbor cause
Even a miracle needs a hand

We'll help our Maker
to make our dreams come true
but I can't do it alone
So here's what we're gonna do

You hope while I hurry
You pray while I plan
We'll do what's necessary cause
Even a miracle needs a hand

We'll help our maker
to make our dreams come true
but we can't do it alone
So what are we're gonna do

You wish while I whittle
You drip while I dry
Lets all try to help a little cause
Even a miracle needs a hand.

You are going to guess the miracle long before I type it, because I want to share some of the backstory so that you can see God’s handiwork and how HIS timing is perfect, if you simply have FAITH and BELIEVE!!!

My Christmas Miracle began almost a year ago, New Year’s Day, 2010 to be exact. You may recall Lisa was quite ill with strep throat, bronchitis, bilateral ear infections and tonsillitis for Christmas. By New Year’s I had caught her strep; however, she was well for the first time in a week and was outside playing with Pete and the other children. She slipped and fell off of the swing, breaking her arm severely in two places. When we loaded her in the car to rush her to the hospital, the van would not start...again. It was a truly sickening feeling. We had to scoop that poor little sweetie up and move her from my van and put her in Pete’s car to get her to the hospital. Many of our friends felt badly for us; however, my friend, J, decided to try and help us get a more reliable vehicle, unbeknownst to us. For months she was in search, continuing to read how we kept pouring money into Pete’s car and my van...we were unable to buy anything more dependable, because all of our money goes to pay for these astronomical medical bills that are never ending. Fast forward to April. I had a dream that one of the local dealership owners would give us a van, all I had to do was ask this person. I kept putting the thought out of my head, it is completely uncharacteristic of me to ask for help.  Besides who had time to write a letter, explaining our great need? It was now a few weeks after my first, very vivid dream and my van was continuing to need expensive repairs and stranding me all over town...we were invited to spend the day up at Victory Junction. We almost canceled, because we weren’t sure if my van would make it. As we were walking around that day, enjoying the grounds, I saw the name of the man I had dreamed about who was supposed to give me a van. I turned to Pete as I pointed at the sign and said “He is going to give me a van.” Pete chuckled and told me he believed me...I had told him about the dream and he has gotten used to my feelings being true these past twenty two years. Three days later, I received a call from my friend, J. When I called her back, she told me to hear her out before I said yes or no, she had a proposition for me. I didn’t realize her husband worked for a dealership (Okay, maybe I did a long time ago, some days I don’t remember my name), I didn’t know which one...she told me and my “God Chills” began. Those who know me well know that when God wants me to know something is from Him, I get what I call “God Chills”...others can actually visibly see them and the feeling is amazing. She explained that there was a program to give vans away to worthy causes; however, she needed our permission to share our personal information. Through my tears, I of course said yes...had I not had my dream and affirmation at Victory Junction I might have been more reluctant to say yes; however, I knew it was God, preparing me for her help. She told me how she and her husband had been on the lookout for a van to help me since she read about Lisa breaking her arm and we were once again stranded by my vehicle. To that point in time, there had not been any that had met the requirements come through the dealership, so she wanted to take the search to a bigger source. There is much more to the story; however, suffice it to say that for MONTHS, J never gave up, even when the people who determine who get vans took a summer break and then came back in September to say we didn’t qualify for the program, because we were not a non-profit entity. In spite of my van giving me the proverbial fit every time I drove it, I KNEW that in God’s timing I would have a van that was reliable and safe and I was CERTAIN it was coming from this dealership! I also told the children almost daily that someone was going to give us a van, we just had to wait until the time was right. I have taught them to depend on the Lord, to have FAITH and to BELIEVE! Remarkably, they DO! They have seen God’s answered prayer in many areas of their own lives. We prayed MANY prayers of Thanksgiving, as we Thanked God for the van He was arranging to bring into our lives. I was certain it would not be new, which would actually be better for us for insurance purposes. Each time my van acted up, I prayed harder. When Pete’s car was rapidly deteriorating, we told God we needed help and soon, He knew it better than we did. Pete broke down two weeks ago and had some expensive brake work done, it could NOT be put off, for his safety and that of the children. As you know, my van needed work and the incredible people at the dealership, spearheaded by Jessy, (Jessy is not my friend J that I have been writing about; however, DEFINITELY my new friend...notice how all of our names start with J :o), got me back on the road. Rachel was hospitalized for pneumonia this past weekend. You also know that my van was giving me a fit on the way home this past Sunday (12/19) ...I honestly didn’t know if I would make it home without breaking down or not. I was exhausted, starting to get sick and feeling overwhelmed by the massive medical bills we are facing. I have actually been considering selling our house and trying to find a cheaper place to live, so that we can pay all of the new medical bills that have cropped up in the past month alone...this is on top of what I have to juggle and pay weekly anyway, after almost eight years of staggering medical bills. The only reason we have survived thus far has been through God’s incredible grace! Pete’s new medicines are exceptionally expensive although I am happy to say, slowly but steadily I am seeing glimpses of the man I married, we are hopeful the new medicines will help him both feel better and stop the progression of the brain lesions. Rachel has joined David and Lisa in regular weekly doctor visits and has two we need to see each week. In addition, we now have another hospital bill to pay from last weekend. Lisa is facing yet another open heart surgery in the next few months and making that trip to Philly, while necessary for her survival, isn’t cheap...On a side note...the local surgeon who wasn’t capable of performing Lisa’s mitral valve surgery when she was an infant has been terminated, as was one of the other MD’s who did the heart caths for Sanger...both were fired for poor performance and increased mortality rates. That just confirms what I kew all along, leaving Charlotte to save LIsa’s life was our only option and still is our only option. I THANK GOD for letting me know that when LIsa was an infant, had we let either of these guys operate or cath her, she would NOT be the same sweet Lisa we know and love today, if she had survived. Lisa still is our biggest miracle, I will never forget that! But I keep straying, forgive me!

Back to my story and worry over finances to pay medical bills...The problems with selling our house and moving are 1) No one would buy it, it needs so much work, money always goes to medical bills, NEVER to the house, vacations, clothes, etc. 2) The news keeps showing the high crime rate and break-ins in our neighborhood, who would buy it? Our neighborhood and its problems dominated the local news this past week after Rachel got out of the hospital. 3) Our mortgage is about $400 (or more) less than what a 3 bedroom rental would be. 4) I could go on but you get the picture...selling wouldn’t solve my money problems, only create new ones. I share this to show you where I was mentally on Sunday as I sat in my van, which was making a horrible noise and PRAYED FOR MY MIRACLE with all of my heart, soul and FAITH! I talked to God, asking Him to bring about what we needed as only He could. I confessed all to Him, tears pouring down my face and refusing to be despondent...Then a complete calm came over me, I wiped my face clean and went in to the house to spend some quality time with the other children.

I returned to the hospital Monday after taking Christian to the MD...the van making that weird, rubbing noise all the way there. They finally discharged Rachel from the hospital and as I drove her to the MD to see one of her doctors, the check engine light came on...again...I truly almost started laughing, I was that calm. I called Pete, whom I knew was startled by my matter of fact, light tone when I told him what was going on...that almost made me laugh as well, because I was visualizing him thinking I must have finally gone over the edge. The week before when I called him and told him the check engine light was on, I had burst into tears, something I rarely do. This time I was lighthearted and almost laughing...I would have thought I had finally lost my mind too! I did know that the peace that I was feeling was coming from God, so I wasn’t worried about my sanity (at least not from my calm demeanor)! Pete called Jessy and she returned the call to me later that afternoon as we returned from the MD. We arranged for me to bring the van in to be repaired on Wednesday.

Tuesday we only had two MD appointments, both very close together in proximity, so I didn’t have to drive the car to very far. I had a LOT I could have gotten accomplished for Christmas, if I had reliable transportation, since I only had two MD appointments; however, I was too frightened to drive anywhere other than where was absolutely necessary, I could not afford to be stranded again. I was cooking dinner when my cell phone rang...it was my friend J and she said, I have some news...I knew exactly what it was! She called to tell me they had found me a van and it could NOT have come at a better time...as always, God’s timing is perfect! I honestly couldn’t hardly breathe, I was so overwhelmed. I didn’t ask what year, color,etc...which was good, because J didn’t know and I truly didn’t care! All I knew was I would have reliable transportation and I was SO incredibly excited! I started to tell the children then changed my mind so that I could surprise them...I DID call Pete and made sure he was sitting down before I told him...I told him not to worry, it was GREAT news, instead of bad, for a change and he was as stunned/speechless as me!

We decided to not tell the children, preferring to surprise them. Pete and I told them we wanted to take a few treats to the dealership as we had planned, to Thank them for the van loaner when we went to Philly...it wouldn’t be quite what I had wanted to do; however, I did manage to make some pumpkin muffins, brownies, we took some cookies and other goodies in a basket and I made some cinnamon rolls that Wednesday morning and off we all went. We waited for Mr. K (J’s hubby)to be able to join us (he is VERY busy and that morning was no exception) and then he asked us to follow him outside. The children thought he was taking us to our rental vehicle to borrow while my van was in the shop...he then made a presentation of the keys to Lisa and told her that these were the keys to her new van...it took all of the children a few moments to understand what he was saying, then a few more minutes for it to really sink in...I admit, until I actually saw it and for many minutes afterwards, even I couldn't wrap my brain around it all! In case any of you are having difficulty understanding what I said... the dealership gave us a van!!!! They gave it to us!!!! As the moments went on, they got more and more excited! I have photos that I will share and some that I will not, because it might give away who was involved and the dealership doesn’t want any publicity or accolades, they are very humble...the General Manager kept Thanking ME! God Bless all of their hearts and Thank God for you J....as Mr W said...he never wants to make you mad, you were like a dog with a bone, never giving up!!!! Friends, the relief I have felt is OVERWHELMING! Did it solve all of our problems? Of course not; however, it has take a huge burden off of me! My Quest van is still in the shop and needs a few thousand dollars of work, which they will be working on this week (and yes, we have to pay for it, however, we don’t have to pay to get Pete’s old car fixed too, Praise God)! We are getting rid of Pete’s Stanza, with the dealerships help...they will auction it Wednesday, so we will have to work out details to get Pete back and forth to work...I guess I am that detail....we have 7.5 inches of snow in our yard (yes, we measured with a ruler and took a photo to prove it). We need the car gone before it dies completely and I need to get it off of my insurance ASAP. We are BELIEVING this is going to solve our transportation issues for a long while, the dealership has been very generous with a 12 month warranty on the power train, and oil changes/tire rotations for several years to come...they have gone above and beyond anything my wildest imagination could have thought of! It truly was God’s timing on it all! A week ago today, when I was so despondent over my van...the plans were already being made...the couple who came in to buy a new Toyota, traded this well kept van and the service manger let Mr. K know that he thought he had a van for the family who needed it...and the rest as they say, is history! They went over it with a fine tooth comb, making modifications and detailing the van until it sparkles...it LOOKS brand new...or at least it did before the snow fell. We are going to get the garage cleaned out so I can keep it inside if possible. Let me tell you about my van! It is a 2004 Toyota Sienna (purchased in 2003 by the original owners who traded it in). It has 95, 500 miles (More now :o) and is BEAUTIFUL! The color is a pale blue metallic, with gray interior. It will seat 7...in several different configurations. There is room for the wheelchair in the trunk AND I can still get groceries in the back with the wheelchair in place! They delivered it to me with a FULL tank of Gas and it sparkles! Pete had to leave early to get to work and I stayed to sign the papers to make it mine!!! Then we all dashed to David and Lisa’s MD appointments at the hematologist...where I had EVERYBODY coming out to look at it...they all couldn’t believe it and everyone thought it looked brand new! I could go on; however, I want to get this posted to share the miracle of the season before too much time passes.

Rachel and I are still not well; however, Lisa is the one I am most worried about, as I reported yesterday. Please keep us in prayer for good health, there are a LOT of MD appointments this week...Thankfully, I have reliable transportation to get us there. Also, my Mom is sick (Not from us) and she needs some prayers as well. Remember to BELIEVE, you never know what God has in store for you or who He plans to use to help you with your miracle. As my friend J said...it only took her a year. God knew which van, and He knew when...our job was easy, we just had to BELIEVE!!!

At the Dealership on Wednesday December 22, 2010

All of us with our new van!!!! My sister took these for me on Christmas Eve while we were at my Mom’s house.












I will share more about Christmas later...I have lots of pictures; however, I HAD to post the Christmas Miracle! Just remember this all started almost a year ago...January 1, 2010...with a broken arm and a friend who would not take NO for an answer!

Look to the LORD and His strength; seek His face the wonders He has done, His miracles, and the judgments He pronounced. ~ 1 Chronicles 16:11-12

---

Saturday, December 25, 2010 8:00 PM EST

Rachel and I are still not well; however, my greatest concern at the moment is for Lisa who has a 103.6 degree fever and multiple symptoms. PLEASE keep her in your prayers. I will update about the miracle when I can. It is also snowing quite heavily for us at the moment. I do hope you have had a Spirit filled, family Christmas!!! Thank you God for the gift of your Son.


Friday, December 24, 2010 3:14 AM EST


MERRY CHRISTMAS EVE!!!!! I am working on my entry to share the Christmas Miracle...I hope it will make sense, my fever is down (antibiotics are working on something); however, I still feel cruddy...so does Rachel, poor sweetie. We keep commiserating on our symptoms and trying to keep our germs to ourselves.

Lisa had speech yesterday and an MD appointment, so no rest for me...but Christmas Day, I plan to stay in my jammies all day! That will be my present to myself! The children were amazed when I told them I didn't have to go to any appointments today and wanted to know how I pulled that off...I told them the medical offices were closed on Christmas Eve, so I was off the hook for the day! We are going to my parents house for lunch, then will come back home so that I can try and get a few things done for tomorrow.

Please check back if you have time, the miracle IS amazing!



Thursday, December 23, 2010 3:34 AM EST


I am a bit delirious from a fever; however, I have no choice than to answer when God tells me to do something. If you aren’t in the mood to hear a sermon, skip this journal entry....Yes, I have FAITH and I BELIEVE in MIRACLES! I proclaim it daily!!!

”...Because you have so little faith. Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.” ~ Matthew 17:20-21

Do you BELIEVE? Do you have FAITH? I DO! I BELIEVE in the Supernatural Power of God. I firmly BELIEVE that the entire Bible is the Word of God and He is truly the same yesterday, today, and forever. The bible is FULL of things that have been said concerning His children in scripture; however, how many of us remember those promises when we experience the challenges of life? DAILY we experience signs, wonders, and miracles, if only we let Him into our lives and truly listen! Lives are totally transformed by the Power of God! Faith is a powerful force that many have not yet embraced. If you are FAITHFUL, you are able to push those feelings of doubt away, once you are able to pray and remember what you BELIEVE!

"To believe in the things that you can see and touch is no belief at all, but to BELIEVE in the unseen is a triumph and a blessing." ~Abraham Lincoln.

“Optimism is the FAITH that leads to achievement. Nothing can be done without hope and confidence.” ~Helen Keller

"Whatsoever the mind of man can conceive and BELIEVE he can
achieve." ~ Napoleon Hill

"Act as if it is impossible to fail!" ~Dorothea Brand

Every human has the power within him to achieve their hearts desire; however, it is the LEVEL of BELIEF we have in ourselves that determines the result we get. People with FAITH are more relaxed because they are not anxious. They know that no matter what comes their way, the perfect result will definitely occur; therefore there is no reason for self-destructive emotions. Does that mean we are never worried or sad? Of COUSRE NOT! It simply means we KNOW in the end God will take care of our needs!

“The world is full of people who started their dreams with nothing but FAITH. When you are in the state of absolute FAITH, you EXPECT challenges. You know that obstacles are a part of the natural occurrences and you easily move through them. When you have this kind of FAITH, you do not allow anything to take you off track. You do not consider an obstacle a distraction or even a nuisance; you simply see it as part of the perfection of everything. In the face of adversity, you hold strong to your FAITH and are unmoved and unaffected as a result. FAITH is so important if you are going to achieve your dreams.” ~ Adebola A. Oni

People often ask me, WHY do all these bad things happen to your family...I had no idea how to answer that at one point in my life. People like to speak of karma, something as a Christian I firmly DISBELIEVE in! My good works or bad actions do not influence what I garner in this world....I know that is good news for ALL who are reading this, otherwise everyone would be in BIG trouble :o) Truly, can you think what I could have possibly done to influence all that seems to happen to us? Am I worse than a serial murderer? Of COURSE NOT!!!! So how do I answer this question now, having grown in my FAITH? When someone thoughtlessly asks me “WHY do all these bad things happen to your family?” I usually reply, “God allows these adversities in our lives to show what BLESSINGS He gives us on a daily basis, if only we BELIEVE.”

Stay Tuned, Have I got a Christmas miracle to share with you, full of FAITH and BELIEF! I hope I feel well enough to write it all in one sitting.

I realize I have this scripture verse on the main page; however, it is the most appropriate scripture to end on:

As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" "Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life". ~John 9:1-3

---

Wednesday, December 22, 2010 4:21 AM EST

I don’t know why the journal notifications didn’t go out on Monday...as you see, Rachel was able to come home and it was such a blessing to have her here! We saw the MD Tuesday and she was happy to see Rachel looking better. They actually have a new system where the doctors never come to the hospital and the hospitalist (MD) takes charge of all of the care...our pediatrician wasn’t happy that some tests she wanted ordered had not been performed. She did tell Rachel that while she still looked weak, she looked so much better than she did on Saturday and was incredibly relieved. She had told me Monday that she had been checking Rachel’s results all weekend and had been distraught about the fact results were taking so long to post. I told her several problems we had, one of which was the nurses actually losing the doctors orders...had I not questioned multiple things Saturday night, they would never have been done. Dr. S said Rachel’s lungs still sounded very junky, so she added another med for her nebulizer and unless we have a problem, we don’t have to return until next week...I will be listening to Rachel’s lungs daily to ensure she is improving and not getting worse...another advantage to being a nurse.

I am not feeling well, so this will be short. I have had fever, a sore throat, ear ache, stomach ache...basically all of Rachel’s symptoms. I am on antibiotics, so HOPEFULLY I will improve quickly and NOT spread it to the children or Pete. It is always so hard for everyone (especially me) when I can’t hug them!

We are going to take my van to the dealership later this morning, then David and Lisa have appointments at the hematologist...that is always a long one, so happy they get to go together!

Please check back in case the notification doesn’t work, I have something I want to share with you later in the week and may not have a moment (or the energy) before then to type an update...I have to buy something to put under the tree for the children to open Christmas morning from Santa and I would like to have something to serve for Christmas dinner besides sandwiches.

Praying you feel the joys, wonders, love and true miracles of the season...continue to BELIEVE, miracles really DO come true and FAITH is powerful!!! I BELIEVE!!!!

Then they believed His promises and sang His praise. ~Psalm 106:12



Monday, December 20, 2010 7:21 PM EST

I am so happy to tell you Rachel came home late this afternoon. We had to go to the MD for her, then I brought her home and went to get her other medications filled. We are exhausted; however, elated to be home!

My check engine light came on as I was taking her to her MD appointment. I will take it in to the dealership on Wednesday.

Thank you Ken (Cheryl's hubby) for picking Christian up for me this AM. Cheryl, we hope you feel better soon! Christian's MD appointment went well, Praise God!

Rachel has an MD appointment tomorrow to see how her lungs sound and to make sure she is continuing to get a bit stronger. We are doing two different nebulizer medications several times a day.

THANK YOU for the continued prayers, they are helping!!!

---

Monday, December 20, 2010 4:31 AM EST

Rachel is still hospitalized and the results of her tests are still pending. She didn’t vomit at all yesterday; although she is still having the other problem, especially after she eats. So far no one else has come down with it; although Christian told me that he, David and Lisa have all been super tired at different times through the weekend, disproportionately to what they have been doing. I am exhausted as well and have what feels like the beginnings of a wicked sore throat (I just woke up with it and can’t go back to sleep. It could just be dryness, the hospital air isn’t that great)...of course, my head has hurt constantly for several days, I chalk that up to worry and stress.

Rachel had some surprise visitors yesterday, Nana and Papa came to see her in the morning, then drove back to Charlotte to see Christian, David and Lisa...Thanks Mom and Dad, we all loved seeing you! Pete stayed home with them yesterday until after lunch, then came to the hospital around 2 PM. Shortly after he arrived, Rachel’s good friend, Stephenie, and her Mom, Cheryl, came to visit, bearing gifts, what a surprise for Rachel. She LOVED the visit, as did we and Thank you both for making the long journey down to see us.

I left around 6 PM. to come home and see the children and spend the night. Christian has an MD appointment at 8:30 in the AM, so I had to be here for that. The same doctor we are seeing will also be the one to decide if Rachel can be discharged from the hospital, I don’t know if we will see her first, or if she will see Rachel first. Cheryl is going to pick Christian up for me from the MD office and bring him home and I will drive down to the hospital to stay with Rachel so Pete can go to work. It occurred to me late last night after I worked out the details of the morning, that we will be at the hospital without a vehicle to get home if Rachel is allowed to leave. PLEASE pray for the van, as I drove home last night it was making the most horrible noises and as I turned the steering wheel , I kept hearing a clicking and rubbing sound. Thankfully, by the time I arrived home, it didn’t sound as bad and that was a relief.

What a welcome I received when I did arrive home, the children were so happy to see me. They sat with me while I ate a sandwich and we watched The Night Before Christmas, a short little cartoon (They watched How the Grinch Stole Christmas with Pete before he came to the hospital). I was a bit worried, LIsa almost fell asleep before it was over and as soon as it was finished, she wanted to go straight to bed...it was 7 PM. That is when Christian told me they were all exhausted, I hope it is just the stress of us not being here and NOT more sickness!

This is short, I have laundry to finish and bills to complete before we go to the MD. I have accepted that many things I WANT to do , will NOT be done this year for Christmas and that is okay. For instance, there will NOT be any Christmas cards, and I know you will all understand that it just didn’t happen this year...and the world will keep on revolving. We will not get to do our holiday baking either, I am sorry for that, I had planned to bring a big basket of goodies to the dealership to Thank all of those wonderful people for loaning us the van for our trip to Philly, THEN I wanted to bring even more to say Thanks for all the fine folks in the service department did for us...maybe I can do it to brighten their New Years...Trust me, I know people don’t expect anything, I do it because I WANT to...

I also want to Thank everyone for the BEAUTIFUL and supportive GB entries, they mean so much. They are easier to read than emails, no pressure, lol. I will get to the emails though, as soon as I can. The Internet service at the hospital was frustrating, for every attempt you made, it worked about once out of ten times...Last night when I got home, I collapsed into bed around 11:45, instead of updating I was exhausted. I actually didn’t wake up until 3:23, got a shower and now I am updating you on my darling. If you missed any of the news, just click on journal history.

As we go forth towards our Saviors Birth, don’t forget to remember why we celebrate in the first place...God is good and He WILL provide!

She will give birth to a son, and you are to give Him the name Jesus, because He will save His people from their sins.” ~ Matthew 1:21

Show me Your ways, LORD, teach me Your paths. Guide me in Your truth and teach me, for You are God my Savior, and my hope is in You all day long. ~ Psalm 25:4-5

---

Sunday, December 19, 2010 12:47 AM EST

I have so much to share; however, I am much too tired to do it tonight. I hope what I write will make sense. I have slept only about 11 hours since Tuesday when Rachel first got sick. We weren’t able to pick Christian up until Friday due to weather; Thankfully Jessy allowed me to keep the Highlander until then. Thanks to Jessy, some very kind folks at the dealership took care of the part bill for me, which just made me cry so hard. It truly was unbelievable, THANK YOU ALL SO MUCH! My van still has a host of other problems to fix, I still need someone to just deliver a new one to my house. I told my friend Ellen, I actually fantasize about finding one in my driveway one day with a big red bow on it...

Rachel woke up Friday extremely ill (for her privacy, I will not explain too much, let’s just say it was GI upset, not from the mouth...you fill in the blank...) We had been invited to a Holiday Gala by Victory Junction for David and Lisa’s Neurologist gave us tickets for her and myself for “starring” in the video (the ticket’s were $50 a piece). Rachel desperately wanted to attend; however, she was much too ill, so she and I stayed home. Rachel and I took Christian, David and Lisa to Pete and they went to the party and it must have been a blast because David said it was the BEST party he had ever attended! Those who know David will know that he doesn’t get overly excited about anything, so this was HIGH Praise! They looked GORGEOUS in their dress clothes, I hope to post pictures sometime....I brought Rachel back home and her temp was over 100, by the time they returned home her temp was over 103. She slept fitfully all night. Saturday as soon as the office opened, I called and they had us bring Rachel in. She sounded terrible and the GI symptom from the day before were back. They did some labs, urinalysis and a nebulizer treatment. Dr. S sent us home and I ran to the pharmacy to pick up meds ($140, plus we had to buy a nebulizer from the home health agency. I have NO idea how much that is going to cost, they couldn’t give me a price, it was Saturday). Pete, Christian and David went to help Pete’s boss move some items into his home. Rachel, Lisa and I stayed home. Rachel began to be quite ill right after lunch, with things rolling out of both ends, poor sweetie. I called the doctor and we agreed Rachel needed to be admitted to the hospital to determine WHY she is so ill and what she has. Rachel has lost almost 13 pounds in the past two weeks....and she didn't have any pounds to spare. I do wish they had decided to hospitalize her BEFORE I spent all that money on medicine and equipment! As David said when I was packing her bag, they want you half dead before they will fix you...and he should know! Rachel has had IV fluids, cultures, breathing treatments, x-rays to confirm she DOES have pneumonia, every lab known to man to determine what else is causing all of her symptoms. She is weary and so am I. I am going to post this so you can effectively pray for us. This was supposed to be my weekend to finally try and get something together for Christmas...just pray we have health, that really is what we need! Pray for Rachel to feel better and for my other three who have been fending for themselves, THANK YOU GOD that Christian is home for Christmas break, he has been a blessing! He did comment on how independent Lisa has become. I will post an update as soon as I can. We know we will be here at least through Monday...



Saturday, December 18, 2010 3:27 PM


Rachel was admitted to the hospital earlier today, We will be here until at least Monday. More Later.



Wednesday, December 15, 2010 10:27 PM EST


Here is the $64,000 question...will we or won't we have an icy, wintry mix making travel treacherous? My friend Ellen has graciously volunteered to take Lisa to her speech therapy appointment tomorrow, and David has kindly agreed to go with her to help with the wheelchair. I was going to ask Christian to go; however, he is still at school...and will he be able to get home, if the roads are as bad as they say they will be? Will Pete and I be able to get Rachel to her specialist appointment tomorrow...those are the questions that all hinge on the weather...if schools are canceled, I will definitely not have Ellen take Lisa to therapy, the other things may or may not be canceled...only time will show the answers to these burning queries! Stay tuned!

In other news, the day has had it’s high points and it’s low points. I will report the facts and allow you to sort out if it was a positive or negative event...Rachel was up a good portion of the night, quite ill. I was up with her, Lisa was in the guest room and David and Pete slept through it all...I finally got Rachel comfortable in bed about 5 AM...and I sat waiting patiently for the MD office to open, hoping for an early appointment...that was not to be, they put us off until 2 PM. In the meantime, I was able to talk to my sweet friend Sandy who called to check on me...poor dear, you sure got an earful, didn’t you??? Thanks for calling, it is always good to chat with you! My Mom called to say that my Dad might be able to loan me the car to pick up Christian, that trip is just too long for him to make it for me. I called my friend Ellen to confirm Christian would NOT be home to go to the speech appointment, bless her heart, she is still willing to help me anyway (different city from us and lots of buildings to navigate). Then I had to dash to get Lisa to her appointment with Dr. H...nothing new to report, although we don’t have to return until March... Dr. H DID say Lisa has the biggest chart/record of any of her other patients...I guess that is why she is their star! I was feeling pretty good when we left, we had snagged a parking spot directly in front of the building, instead of having to park in the garage and walking a block in the bitter cold. I got Lisa all settled and rushed to move, so the lady who wanted my spot wouldn't be inconvenienced, and that is when I noticed IT. The Check engine light was on, glowing bright orange and would NOT go out. I felt as if I had been kicked in the stomach. I called Pete, what should we do? He was already on standby to pick Lisa up for ballet and drop her off, just in case I didn’t make it back from Rachel’s MD appointment on time, now what? Could I even GET to the appointment? Just as panic was about to set in, I thought of Jessy, the kind lady at the dealership, who told me they had a mechanic on staff who could work on Nissans. I gave Pete her number, through my sobs, I was just so distraught, something that usually doesn’t happen to me...I think I scared him! I wanted to sit there and cry and get it all out; however, it had gotten very quiet in the backseat and when I looked in the rearview mirror, I saw LIsa staring at me...she NEVER sees me cry and I know she had no idea what was wrong with Mom. I stopped immediately and told her I was playing a game, I hoped I didn’t frighten her...she went back to chattering and singing and was perfectly fine after that. Pete called back to tell me he had left Jessy a message to see if there was anyway to help me. I arrived home, checked on Rachel, got Lisa a late lunch and while I was preparing it the phone rang. Jessy said bring the van in after Rachel’s MD appointment and they would help me out. And help me out, she did! I arrived around 3:15, she got all of the paperwork taken care of and had us in a Toyota Highlander and on our way within ten minutes. I took Rachel by Sonic to buy her a slushie, she needs to put on weight after having lost 3.6 pounds in fluid weight since yesterday....Dr. S said if she continues to vomit and gets any more dehydrated, she will have to be hospitalized tomorrow...so we stopped for something tasty off their 1/2 price Happy Hour Drink menu. She did manage to drink a little more than half and eat a 1/2 of a dry biscuit when we arrived home. I have been able to get her to drink a tiny bit more and eat a few crackers...PLEASE pray for her to feel better, the flu test was negative, as was the rapid strep; however, Dr. S thinks it is strep and started her on antibiotics anyway, as well as put her back on the inhaler (she was able to be off for exactly nine days...). PLEASE PRAY that Rachel is able to eat and drink, pray for her nourishment, we do NOT want a hospital stay! Please pray no one else gets it, we were all exposed to strep Friday night at the choir concert...which means we were exposed all of last week. I brought her home, put her to bed, then dashed back to Lisa’s ballet class...Pete had entrusted her care to Miss Jackie, the ballet instructor and gone back to work and when I arrived, I saw little girls dancing the nutcracker for their class and having an amazing time! One of the Mom’s came in just before class was over and wanted to know who the graceful elegant ballerina was...she was talking about LISA!!!! I was so proud! I was also proud when I asked one of the Mom’s if we had seen her at the guitar and piano concert on Saturday. She said she was there; however, hadn’t seen me (she has a VERY active two year old). I asked which one was her child (a cute little girl guitarist) and then she asked which one was mine...I said the young lady who stole the show and she said, the pretty girl playing “Stormy Monday”??? I said yes, that would be the one...she was stunned, wanting to know if I realized I had a prodigy on my hands...um, yes, I do! Again, I was so proud and walked out beaming over my two talented daughters! I couldn’t wait to tell Rachel and it brought a sweet little smile to her very weak, tired face.

I came home and prepared dinner and Pete stopped by the pharmacy to pick up 6 prescriptions, one trip less for me, Thank you honey! To all who have prayed, called, left messages and just understood, Thank you! I don’t go in for all of the commercialism of Christmas; however, I do enjoy the music, movies, an occasional treat...so far this year, I have NOT been able to partake in any of that. I Hope to remedy that this weekend, maybe then I will feel the SPIRIT. In the meantime, I once again feel the love of so many, Thank you!

In your unfailing love you will lead the people you have redeemed. In your strength you will guide them to your holy dwelling. ~Exodus 15:13

---

Tuesday, December 14, 2010 10:20 PM EST

Prayers Please, sometimes that is all you can ask for...

David’s Neuro-opthalmology appointment went well today. HIs visual field was good, as was his vision. His numbers that show his intracranial pressure showed just a slight elevation, not enough to need a lumbar puncture, for that I am INCREDIBLY grateful, I really needed for that to be okay with all we have going on around here. We don’t have to go back until March, although the doctor seemed a bit worried about something, and reminded me three times to call him if I had any concerns or noted any changes...don’t worry I told him, I will! Sometimes doctors don't want to tell you everything and their demeanor makes me nervous, I am not stupid...I tried to figure out what had him so on edge; but, all I could glean was David's SVP (vessels) on the left side of his temporal lobe were pulsating intermittently, the pulses on the right were subtle...ABSENCE of pulse would be bad...David’s SVP pulses have always been subtle, just the change to the left that is now intermittent, with stopping at certain intervals...I think that did cause him pause, it is the only thing I could hear him say that was different...subtle is better than intermittent. When I questioned the MD, he told me not to worry...okay, I won’t because you said not to.

Rachel woke up with a harsh cough and said she had an odd sensation in her throat (no pain). She was complaining of back pain this afternoon and took a long nap. I woke her for dinner and she came downstairs and promptly vomited. She felt better; however, we couldn’t get her to eat much or drink much. She felt too weak/sick to go to her guitar lessons, so she had to miss it, poor sweetie, She was so sad about that. If she isn’t better by the AM I will call the MD. We have an appointment with the specialist on Thursday; however, this seems to be an acute illness. Lisa has an appointment with the sleep neurologist tomorrow, as well as ballet tomorrow afternoon, so I will try to fit another MD appointment in around those appointments that are already scheduled, if Rachel needs to be seen...if not, something else will have to give, if she needs the doctor...PLEASE pray no one else gets sick! We just put Rachel back to bed after she vomited again and she is complaining of her throat hurting. Lisa is asleep in the guest room.

Christian has one more exam, today was a draining day for him...I hope to get him home on Thursday.

It really doesn’t feel like Christmas, I feel as is something is trying to suck the joy out of my heart...I want to feel the SPIRIT of the season; however, there is so much going on here that I haven’t shared. We have had a very different kind of December, getting a late start due to being away for almost two weeks...every time we think we have one “leak” taken care of, three more pop up to take its place...It is draining...and I am eternally cold, due to the weather...

Like one who takes away a garment on a cold day, or like vinegar poured on a wound, is one who sings songs to a heavy heart. ~Proverbs 25:20


Tuesday, December 14, 2010 7:37 AM EST

It is 15 degrees outside, they said it feels like 8 degrees. This is exceptionally unseasonable, I live here because I don't like cold weather! We roasted through the summer and it looks as if we will freeze through winter...strange weather, take note...we have to leave shortly for our VERY long day at the neuro-ophthalmologist...it always takes more than three hours (plus it is a 45 minute drive one way)...David hates it, so do I! Today, so will the girls. Please pray his eyes look okay, I really do have a lot on my plate...


Monday, December 13, 2010 4:07 PM EST

My Top Ten List of News...time is short today....

1) Rachel’s EKG shows she is bradycardic, although she doesn’t show signs of any metabolic or cardiac issues. We see the specialist Thursday.

2) Lisa’s local cardiologist will be out of town until December 27. We spoke for almost thirty minutes on Friday about Lisa and our visit to Philly. He still feels Lisa needs surgery within 6 to 8 months and is looking forward to speaking to our cardiologist in Philly to discuss what their thoughts on everything are. They are waiting on several key people to all be at the weekly conference to present Lisa so that they can come to a decision/plan of treatment for Lisa and hopefully we can have some idea of what we are up against and a time frame so we can plan.

3) David has to see the neuro-ophthalmologist tomorrow. Rachel and Lisa will come with us, it will be a long day. Lisa has a sleep neurology appointment on Wednesday.

4) Christian had some trouble with the computer/level designs for one of his classes. The professor has extended their project deadline until Friday due to the computer glitches. That means he can’t come home Wednesday as planned. I hope I can get him Thursday evening after Rachel’s appointment, if the van holds up and the weather behaves.

5) We actually had snow flurries again last night, with a slight covering to the ground. I discovered it was snowing when our neighbor called to say his home had been broken into while he was out of town. Pete went over to help him secure the door.

6) Our refrigerator isn’t working properly (yes, again), the refrigerator freezes up and then partially thaws, leaving food frozen in spots and a horrible wet mess in the part of the fridge that has thawed.

7) Pete’s health insurance premiums are going up 38 percent on January first...this is just the beginning of what will prove to be a VERY bad year after the passage of universal healthcare...if you don’t think so, you either have government insurance or don’t use the healthcare system often... I will delete any guestbook entries that wish to debate it, this is MY opinion and it is based on FACT...I am probably one of the few people who actually read the 2,700 plus page manifesto the government put out on the Universal Healthcare Bill (this would include Congressional members who voted on the bill). I usually keep my politics off of this board; but, this one steams me...

8) The choir concerts on Friday and Saturday night were gorgeous, Saturday’s was better than Fridays! (they were performed twice, Rachel and Lisa both did amazing both nights).

9) Rachel stole the show at the Guitar recital on Saturday, hands down! She is exceptionally talented and she received some incredible compliments.

10) I am waiting on Lisa’s respiratory therapist and then we have to take David to Pete at work, so he can go to woodworking.

I hope you are in a warm, dry place and NOT snowed in or flooded, as many of our friends are experiencing...I AM THANKFUL FOR MY BLESSINGS!

---

Thursday, December 9, 2010 9:34 PM EST

I moved one of the MD appointments to next week when I got up this morning, therefore I only had to go to two pharmacies and one MD appointment today, although we also had to have labs drawn for Rachel. My friend Ellen was able to help me get the van back to the dealership...they are the most incredibly kind people and I will be forever grateful to them as well as our friends, the J family, for procuring a van for us to have safe travels to Philly...I will forever be grateful to NOT have been stranded on the side of the road! Thanks to Ellen picking me up, Pete was able to get his brakes fixed today (always good to have brakes that are safe)! My van is holding its own, for which I am thankful...I had forgotten how good it was to be able to see a dashboard control panel in the dark, until I drove the new van. Getting back in mine tonight to take Rachel to choir reminded me of that luxury, lol, I had gotten accustomed to the new vans controls! Thank you to my friend Cheryl for bringing Rachel home tonight after choir, that allowed me to get a few needed things done around my completely messy house..it also helped me get a tiny bit of rest, because working in the house is a lot different than driving all over the place...helps your perspective on things as well. Thanks again ladies! Of course, we had a delicious dinner to enjoy as well, so I didn’t have to do anything except heat up the food...another blessing!

Rachel’s doctor wanted us to see the cardiologist for an EKG, that is scheduled for tomorrow. Tomorrow night is the first of the two choir Christmas concerts, the girls and I have to be at the church at 6. I am working both nights, Pete is working two jobs Saturday night...we couldn’t contribute any food to the reception after the concert tomorrow night, therefore we will probably skip that, unless the girls insist. Saturday should be fun as well...we will have to miss several activities; however, we will do what we can and the world will not stop turning. I am looking forward to Rachel’s guitar recital Saturday afternoon down at Spirit Square. Sunday I HOPE to get a few things accomplished around here and maybe decorate a bit for Christmas...Don’t worry Christian, I will save some for you to do as well honey. We are praying as you start exams tomorrow.

Praise God for rest and renewal, it makes things look much better and gives me strength to face the next trials and celebrate the positives! We ARE grateful for ALL we have!

You wearied yourself by such going about, but you would not say, ‘It is hopeless.’ 
You found renewal of your strength, and so you did not faint. ~Isaiah 57:10

---

Wednesday, December 8, 2010 11:57 PM EST

Before I get to the “stuff” from the week, I have to share something very special that another family did for us. We belong to a Christian Teen Homeschool Group and until Monday, I only knew this family from online interaction and David had been at a function with the teen from this family. Terri, her husband and children ALL got in on this kindness to us. They brought a cooler of food to us Monday and when I say a cooler, I mean a cooler as large as my kitchen table! Terri began to pull food out (fresh and warm from the oven!) and there was a fried turkey (my first it was YUMMY! I had always wanted to try one and now I have), stuffing, a corn casserole, green bean casserole, Italian Spaghetti casserole, potato salad, homemade mac and cheese, 2 pans of rolls, 2 pans of cinnamon rolls, a quiche, 4 cans chunky soup, cheesecake, chocolate chip cookies...I KNOW I am making you hungry! We have been feasting all week! They even brought a can of nestea instant tea, foam plates, cups, bowls, forks and spoons...so I didn’t have to worry about doing the dishes! I may have forgotten something (there was so much!) but I don’t think I did...it has been simply delicious and amazing and it made me cry...HOW do you thank someone for things like that? Terri said no thanks needed, it was God instructing her what to do. I know that feeling, so I understand, it has just been awesome to be on this side of the coin... (I still need your address Terri, so I can Thank You properly!)... I went to deliver a wreath to my friend Ellen today and she gave e a big bag of oranges, some cookies and pumpkin muffin mix...just because! Another kindness I have not yet mentioned was a gift for me to take to Philly for Lisa from our dear friends, the Z family! The day Lisa spent at the hospital testing, I had saved this special gift for her, thinking she might need some cheering up. I was right, after that horrific stress test (Melissa, Lisa has many factors that make the testing you asked about lethal for her). There are so many kind and thoughtful people in this world and fortunately, they usually cancel out those who are thoughtless or rude. If I hear one more person tell me they know how I feel...actually, NO you don’t...no one could....there is SO much of our story you don’t know (believe it or not) and frankly, no one, other than God, knows all of it. So to each and every one of you who have surprised us in big ways, small ways, prayed for us, written us kind notes...each and every kindness is a hug and we THANK YOU!

Now, for the week in review...just the highlights, I have very little time at this moment. David and Lisa’s MD appointments went well and labs were good..the problem was BOTH of them had exceptionally high Blood Pressure...no explanation for that...I am watching them both carefully. Choir went well Monday night, as did woodworking. I took the girls to my Mom’s to spend the night and by the time they had a snack and I got them settled and in bed, it was after 10 when I got home. I had to finish a lot of things and try to get a few hours sleep, which I did. Tuesday was our trip to Chapel HIll. David is having a few side effects to the medication he is on..severely cracked lips and chapped hands/arms. Three more prescriptions to try and help things along...As I was driving back to Charlotte, the pediatrician called me by mistake (Long story, I had called to get a refill for Christian’s medication. She thought I needed to talk to her. I actually did, not about him though). Rachel is having an exacerbation of a previous (private) health problem and we were able to discuss my worries/concerns. She is seeing Rachel Thursday for an appointment to evaluate things and Rachel will see the specialist next Thursday, IF I can get the logistics worked out...I already have two MD appointments scheduled that day (one has been rescheduled twice already, plus we have speech for Lisa that day). Anybody seen that money tree...I just don’t know how to pay for it all, I truly don’t. Yes, I know everybody is hurting...that does NOT make me feel better, especially since this is going on year eight of so many financial woes! I also do NOT like to see others hurting! If we were to go tit for tat, I unfortunately think I would be able to hang in there with a lot of you, not an event you want to be the winner of....yes, I am tired and that might be coming through..forgive me....I KNOW we have tremendous Blessings, that is evident (reference the first paragraph of the journal :o). Once we arrived back in Charlotte I dropped David off at home, then drove to Matthews to pick up the girls and Bandit. He was one happy dog to finally get home, he looked like a little child instead of a dog, lol. We had a quick bite, then I took David and Rachel to Pete, who took them to aviation explorers and guitar respectively. I took Lisa to choir and helped out, as I do every week for their regular practice.

I have an incredible amount of stress on SO many fronts. It isn’t one ill family member it is FOUR! Appliances keep breaking down. Everything I do takes twice as long as it should, i.e: medications not being ready at the pharmacy, or the pharmacy not having the items we need and I have to go to anther one to get what we need. Pete’s company is going to a self insured fund in April which means we will be at their mercy as to what they will pay! That one scares the hooey out of me, we NEED better insurance, therefore Pete NEEDS a better job! Any suggestions??? I have two cars that have had more lives than a cat. Pete told me at dinner his car needed to go in the shop Friday (He wanted to take it tomorrow; however, I didn't have anyone to help me get the loaner van back) and he drove my van tonight and discovered it making a horrible, shaking noise in the engine...and I have to give the WONDERFUL loaner van back tomorrow...trusting God to handle that problem. It has been an incredible blessing to get in a vehicle and not worry that it will not start or leave me stranded on the side of the road. As I was leaving choir rehearsal with Lisa Tuesday night, the parking attendant noticed I had a new van. I told him I had to give it back Thursday and he said...prayer works, I will pray someone gives you a new van of your very own. Rachel had said the same thing Tuesday morning after a dream she had! I had such a feeling of comfort after both Rachel's words and then the parking attendant’s....so we shall see what God has in store for us! He sure has taken care of so many things that seemed impossible!

Lisa had speech today and then ballet. She told me she didn’t feel like going to ballet...that has NEVER happened. I finally convinced her to give it a try and she did...about 40 minutes into the lesson, she had to come out and take a 10 minute break, then she went back to dance. Poor sweetie has had a full week, she will only have to go to one MD tomorrow Thank goodness. Rachel had theater and they had made posters at last weeks class for her and Lisa...I thought that was incredibly sweet of them! They also had a holiday party tonight. David had Engineering Explorers...they broke off into seven groups and built bridges...his group came in second, he was happy. He has to build a catapult at home, without using nails or screws...should be interesting!

Christian has exams coming up and could use some prayers, he is feeling lots of pressure to keep his grades as good as he can in hopes of getting more scholarship money. It is the end of semester as well, so there are LOTS of projects to be completed.

Thank you again for stopping by to visit. We are continuing to wait for answers on Lisa, our local cardiologist is out of town and the Philly team should be meeting to discuss Lisa tomorrow so HOPEFULLY I will have answers by next week...

On the weather front...it is freezing here! For example, this morning it was 17 degrees...I checked and Philly was 24 degrees and Westminster was 28 degrees at the same time...It seems cold weather followed us home...and we live in the South, it should be WARMER, especially at this time of year!!!!

But now, for a brief moment, the LORD our God has been gracious in leaving us a remnant and giving us a firm place in his sanctuary, and so our God gives light to our eyes and a little relief in our bondage. ~Ezra 9:8

---

Monday, December 6, 2010 4:20 AM EST

If you missed any of the past 12 days of updates, please click on journal history.

We arrived home around 7:45 last night after a very long trip home through some snowy, treacherous weather in the Virginia and NC mountains. I drove the entire time, as I did on the majority of the trip (Pete drove a tiny bit in his hometown). Pete didn’t feel well and slept most of the way home. He had a bad headache when he woke up around 3:30 PM (I thought it could have been a migraine or a side effect of the new medication, although he has been taking it for four days now, so I don’t know...). Our car was PACKED to the brim with some extra treasures Pete’s parents gave to us as they downsize. (We have quite a few “new” treasures for our tree, mostly handmade ornaments made through the years). Pete wanted to dig through the back of the van to find the bag with all of the medication in it; however, when he opened the trunk a small box about 4X6X6 came tumbling out and he fell down in the parking lot (shocked us all; however, he wasn't hurt). At that point I insisted he close the trunk and went into the store to buy some Advil. The snow was coming down harder and starting to stick. I have a couple photos of Lisa and Rachel standing in the snow at our stop about thirty minutes before, when I needed gas (I was happy to see it less than three dollars a gallon), that I will post if I get a free minute. You will be able to see that at that point in time, the snow was already starting to accumulate...Pete and David were too cold to get a photo, which made Rachel laugh, that the girls braved the snow; but, the guys didn’t. Anyway, the sun was setting, it was getting colder, the streets were getting slick and I was worried I was going to be stranded in the mountains and I don’t have time to be stranded anywhere this week! (Lisa also has ballet on Wednesday, she reminded me of that when we arrived home last night...funny what they think of when they finally see home). We hastily unpacked the car, in between two sets of neighbors running over to check on Lisa...how worried they were for her, bless them and ALL of you who have been checking in and leaving me such wonderful supportive messages, GOD BLESS YOU!!!! I didn’t have a thing to fix for dinner, so I ran out and picked us all up some fast food and we started the chore of unpacking and laundry (everyone got their baths while I was out getting the food). As you can see, it is an early, busy morning for me; however, if we can get through this week, next week should be better...or not...I have to figure out a few surprises for Christmas morning and how to do it on an even thinner budget than usual. Rachel pointed out that it was all about Jesus anyway, not the presents...something we have ALWAYS emphasized; however, it certainly was great to hear that it has actually been understood, not just words we say! We didn’t get to see Christian on the way home, he had a leadership training exercise. He is hoping to be an RA next semester and that would help on his dorm bill...of course, they may not have an opening in his apartment building, we will just have to wait and see. While I was checking my emails, I saw High Point also had snow Saturday...quite a lot, actually...I haven’t had a chance to find out from him if any accumulated (my Mom told me Saturday they had flurries in Charlotte as well, she was worried about us since we were driving from Philly to Maryland that day. NO SNOW AT ALL anywhere we were Saturday, although as we left yesterday morning we saw a few flakes and drove through flurries off and on until we were a mere 70 miles from home).

I have a prayer request please, for my uncle (My Mom’s brother). He is in a drug-induced coma for respiratory issues. PLEASE keep him in your prayers. Also, for my Dad-in-law to make a FULL recovery! And for my Sis-in-law's back to heal without surgery!

Pete and the children are still asleep, so I have time to get a few things accomplished before they wake up...Early MD appointments today, so I better run! THANK YOU for checking in on us and for all of your support and prayers...we love you all!

---

Saturday, December 4, 2010 3:19 AM EST

We had a long, busy day today at CHOP. I so appreciate the many notes of support in the guestbook, it let me know you were thinking of us.THANK YOU! Dr. R wanted to speak to Dr. G (our Charlotte cardiologist) and Dr. S (Philly surgeon) about the results and get everyones interpretation as to what to do with the data that was collected. I will keep you posted. She did think keeping LIsa’s INR (coumadin level) above 2.5 was key to ensure Lisa felt good and that keeping her blood thin enough helped with any turbulence in the valve, just as I suspected after the last episode when the ECHO showed so many problems (when Dr. B saw Lisa become faint/weak/disoriented). Lisa was a SUPERSTAR through it all. Poor sweetie had a rough time on the treadmill, due to her femoral occlusion and the pain it causes her. She managed to do many levels; however, when it was over she was so sad and in pain that she had tears rolling down her face for twenty minutes, poor sweetie. She never made a sound though, just curled up in her wheelchair and suffered silently. It hurt my heart.

We head back to Maryland in a few hours, then on to Charlotte tomorrow (Sunday) for what will prove to be an incredibly difficult week. Monday we have three MD appointments, choir rehearsal for the girls (the first of 4 this week...they have concerts both Friday and Saturday night, plus Rachel has a guitar concert Saturday afternoon at Spirit Square and David has Fire Fighting Explorers on Saturday as well). I have to get the girls to my Mom’s after choir Monday night, because David and I head to Chapel Hill Tuesday to see his MD, then he has Aviation Explorers that night, the girls have choir and Rachel has guitar. Wednesday is speech, and a MD appointment, Theater for Rachel and Engineer’s Explorers. I can’t for the life of me remember what is Thursday, other than a MD appointment and choir...I think I have blocked it out because I know I have to give back this wonderful van...I have put a LOT of miles on it this week (yes, I have done 99.5 percent of the driving, as usual).

I need to try and get a few hours of sleep before we head out, so I will say au revoir. Please continue to pray for safe travels and wise doctors!

Thursday, December 2, 2010 8:19 PM EST

Today was a fun day, which is what we needed. It helped take my mind off of tomorrow. Our online friend, Joyce, came to Philly to meet us in person, what a special treat for us! She arrived just as we returned from breakfast, and spent the entire day! We had a ball watching Lisa play at the Please Touch Museum and even played some ourselves. Then she took us all out for burgers and ice cream sundaes (so much for watching my waistline, lol...I watched it alright...get bigger! That wasn’t so bad though considering I had been incredibly good all through Thanksgiving and tomorrow is a new day). We stopped by Target to pick up Pete’s medication that they ordered for him and then she had to leave us around 5 PM, to get back home to New Jersey. She was with me when I receive a call from David’s MD in Concord...even in Philly with the answering machines off, they find me! We also received a call from the Ronald McDonald House, informing us they did NOT have room for us tonight...I actually wasn’t surprised and Thankfully we have the room at the Crowne Plaza for the next two nights. Joyce offered for us to stay with her tomorrow after Lisa’s appointments; however, if we don’t check out by 11 AM, we still have to pay for another night, so I think we will just stay put. Thank you Joyce for everything...it was a PLEASURE to finally be able to hug you in person!

Pete’s wedding band cracked in half while we were in line at the Museum. That poor ring has been through so much, it is a wonder it has lasted as long as it did! Pete wants to super glue it together, that isn’t going to work though. We will take it to the jewelers when we get home, although I do NOT think it can be repaired.

I bumped my head in the shower this morning. There are two soap dish holders, one is at a very odd angle and very high up and juts out about three inches. As I moved Lisa’s shampoo/conditioner from one side of the tub to the other, I bent down and put a fairly large goose egg bruise on my forehead. Every time I rubbed it, touched it by accident or wrinkled my forehead, it gave me a pain...

Lisa took a little nap, then she and Pete went downstairs for a swim. I straightened up our room and got things ready for tomorrow. Lisa just finished her bath and is falling asleep as I type. Tomorrow is a BIG day and I really don’t know what to expect, so I am trying to simply remain calm and keep my expectations low. We don’t know if we will have any answers tomorrow...we have been to Philly before, leaving town knowing surgery was imminent and we have left here without having a clue. The good news is, GOD knows the plan and only HE knows the timing. That in itself is a huge relief! Praise His name!

He has delivered us from such a deadly peril, and He will deliver us again. On Him we have set our hope that He will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many. Now this is our boast: Our conscience testifies that we have conducted ourselves in the world, and especially in our relations with you, with integrity and Godly sincerity. We have done so, relying not on worldly wisdom but on God’s grace. For we do not write you anything you cannot read or understand. And I hope that, as you have understood us in part, you will come to understand fully that you can boast of us just as we will boast of you in the day of the Lord Jesus. ~2 Corinthians 1:10-14

---

Wednesday, December 1, 2010 8:35 PM EST

If you missed yesterday’s update dating back over the past week, please click on journal history.

We had a wonderful breakfast at the hotel this morning, before departing for Pete’s MD appointment in a cold, misty, foggy rain. We were both QUITE impressed with this new specialist and the amount of time he spent with us...2 hours and 20 minutes to be exact....I guess that is why insurance will not pay for him to treat patients, it isn’t cost efficient...he is incredibly thorough AND personable. There was a lot to absorb and he feels that he can help Pete, which certainly made us both feel quite optimistic. Pete will start on 5 different medications, three oral, two injectable (which can be combined into one shot) to try and get him back on his feet and productive...that will be a huge relief for ALL of us! Pete is actually excited about trying the treatments and we are hopeful they will help him to feel more like himself of old...something we haven’t seen for many years. For the first time ever he is willing to put in the effort and realizes it will not be an easy feat. That in it self is huge. It makes me incredibly happy...please agree with me as the cost of all the treatments, labs and follow ups occur that he doesn’t use that as an excuse to not follow through. This will definitely not be cheap! As best we can tell, insurance will not pay for four of the meds. We ordered two meds. while we were at the MD office, before Pete could change his mind, lol. Those were the injectables (they should be delivered by next Wednesday to our home) and I still need to get syringes, which insurance also will not pay for. At least the shot will be a SQ shot, so the needle is small. The MD gave us samples of one med, which will hold us until we return home Sunday (we will get it filled then) and we are having one filled at Target (they were out of stock; however, they will have it in after 4 PM tomorrow. The good news? Target is right next door to the hotel we are staying at in Philly and our copay is only $25 per month for this one). We also purchased one medication from the MD office (that was $33). I do not know what the future will hold; however, doing nothing can no longer be an option. This has placed quite a toll on us all, not just Pete. It has been exceptionally hard these past eight plus years, especially since NOTHING was being done. Today is a new day, full of hope!

We left the MD office around 11:50...we had been there since 8:50 and Lisa was good as gold the ENTIRE time! She is such a sweetie! She didn’t once interrupt to ask any questions, just quietly playing, writing and reading as she sat in her wheelchair. The weather was HORRIBLE as we made our way to Philly, Thankfully we were only in the car about 70 minutes and Lisa dozed off for part of the time. We arrived to meet a very sweet lady named Kate who works for the hotel, who helped get us the reduced rate on the room. She also got us three complimentary tickets to the Please Touch Museum, which we will use tomorrow. Our dear friend Joyce, is coming to spend a good part of the day with us and we are VERY excited! She has been such a dear friend to us this past year and even came to Philly to meet Rachel while she was on tour. I can’t wait to give her a hug! Pete and Lisa swam a good bit in the hotel pool this afternoon and they are back downstairs right now. I got our room organized today, then went downstairs to take some pictures of them and watch Lisa turn flips and show me how she is learning to swim under the water. Pete keeps having to make her take breaks, because she gets so exhausted, poor sweetie. We had two gift cards to Fridays ($10 each) plus a coupon for a free entree, so we decided to have dinner there...we were happy to discover there was one in the parking lot of the hotel when I googled it before we left home. We were able to walk to dinner in the cold wind...at least the rain stopped this afternoon. I brought half of mine back home, so Pete has a snack after he swims and Lisa has tons of fries between hers and mine which were leftover.

Thank you to all of our wonderful friends and prayer warriors. We feel you lifting us up and so appreciate your support and love.

Surely you have granted him unending blessings and made him glad with the joy of your presence. ~Psalm 21:5-7

---

Tuesday, November 30, 2010 4:05 PM EST

We arrived safely at my in-laws house Wednesday night after a horribly hectic, stress-filled morning. I don’t have Internet access at the moment; however, have decided to keep a running journal of some highlights so that when I do have computer access I can keep you updated on the news. You are going to be overwhelmed by all I write, because for the first time in MONTHS, I actually have a moment to do it.

WEDNESDAY 11-24-10

We arrived exactly at 9 PM, having picked Pete up at noon from work. Traffic wasn’t horrible, except in some areas (Roanoke, VA and twenty miles before Winchester, VA). With patience, we navigated through without incident. THE VAN WAS A DREAM TO DRIVE!!! Both Christian and David had plenty of leg room and Rachel and Lisa had so much room on the bench seat in the back that they took one of the roll top bags from the trunk (I had a soft blanket I like to travel with inside, along with gloves and mittens) and used it as a pillow for them both. It was so cute to see their small heads lying on it, side by side from each direction. We played some speech games with Lisa, getting the entire family involved and it helped pass the time. We listened to some great music (rock and jazz lovers here folks), they played their video games and read their books. It was great to see Mom and Dad’s house in the dark though.

When we got settled in, we discovered that my poor Dad-in-law did NOT have pneumonia as first diagnosed, he has emphysema, undiagnosed until now, in spite of the fact he has symptoms for a long while now. The docs always blamed in on his heart in the past. He was actually hospitalized from Monday until Wednesday, when we arrived. He didn’t look well at all, and I was quite worried at his coloring.When I couldn’t sleep Wednesday night, I sat up praying for him. I am happy to say that by Thanksgiving morning, while still quite weak and anxious, he looked MUCH better, Praise God! Good medication, excellent care form my mom-in-law and prayer are a healing combination!

THURSDAY 11-25-10

We had a wonderful leisurely morning, I didn’t get my shower until 10:30! I called my parents to wish them a Happy Thanksgiving and my Dad had already been to my house to take care of something I had wanted to do before I left, but had forgotten. They were going to my sister’s to celebrate.

My MIL put out an excellent lunch for everyone to enjoy, with very little help from me, I must confess. Pete’s oldest brother and uncle joined us, along with his sister (who is staying at the house with us until Wednesday, what a treat!). We were disappointed that Pete’s other brother and his wife didn’t join us; however, having had a one year old four times in our own lives, we understand about homes that aren’t baby-proofed. Rachel and Lisa missed their cousins the most; however, we all had a wonderful time anyway.

After lunch, we left the mess for my Mom-in-law to clean up (I KNOW, but she truly didn’t mind!!!), and went to Pete’s brother’s house to pick up a truck my other BIL was borrowing, as well as to see the long-awaited and needed addition to their home....it is still being built; however, you can tell it is going to be GORGEOUS! I am so happy for them, I love it when someone has good things happen for them. My SIL was cooking their dinner and the baby is getting over a cold, so we didn’t stay long. We just went in to say hi, then out to the addition to be WOWed. We also picked up a guitar and practice amp my BIL so graciously lent to Rachel. She has been in seventh heaven since we brought it back.

We arrived home and those that wanted it decided to have dessert. We visited for a while longer, then Pete’s brother and uncle left. Lisa was “starving” and wanted a hamburger...so, Meemaw, defrosted beef and made them for LIsa, David, Rachel and my SIL (yes, there was a big turkey left; however, sometimes you want something else and Meemaw was happy to oblige). The burgers smelled SO good; however, I decided to have my dessert of the day for dinner...Pecan pie my SIL made, it was YUMMY!

After dinner Pete took the children out briefly because it was getting dark and VERY cold. When we left Charlotte on Wednesday, it was warm and sunny, Thursday was cold and rainy. It felt even colder to me, because of the dampness here and warmth we had just left the day before....brrrrr, I am feeling cold all of the time!

Next, Aunt Susan pulled out some craft supplies and Rachel, Lisa and David made a few Christmas ornaments...they are lovely and I can’t wait to hang them on our tree. Christian and Meemaw had a wonderful chat in the kitchen and Pumpaw was resting in the family room. It was a wonderful end to a quiet, relaxing day...the first one I have had since the last time we were here in July. I hope to have a few more before the round of travel and medical stuff starts back up on Tuesday. The only thing I would have done differently today is to have remembered to take a few photos!

FRIDAY 11-26-10

This is the morning I got the brilliant idea to keep a running journal, since I had the time and the means Thanks to a special someone, who shall remain nameless....I had thought about it once or twice before, however, just didn’t pull out the computer. I was lying in bed, unable to do much of anything else, since the house is full in every room or connected to where someone is sleeping. After a few hours of praying and meditating, I decided to get the laptop out and type....Pete can sleep through most anything....and he did, lol.

Today was another lazy day. I woke up to smell bacon frying (I had been asleep about an hour, because I had been writing this update when I wasn’t sleepy). I came down and enjoyed my peanut butter rice cake, while the others had a warm, delicious breakfast (are you sensing a theme? Eat, sleep and eat some more, lol). We got ready for the day and watched a few cartoons and it was suddenly lunch time (we had a long breakfast, as everyone arrived at their own pace). After lunch, Meemaw pulled out some family treasure and we enjoyed looking through them and taking a few mementos for our own...Christmas ornaments were a huge hit for me, many handmade through the years. Pete and I ran out to the store and were pleasantly surprised to see the crowds had cleared out. We returned home and it was time for dinner, of course. There were yummy leftovers form turkey day to enjoy and we did. After dinner we took a drive to see if we could find any Christmas lights, there weren’t a lot; however, we had fun looking and driving and singing Christmas songs. When we returned home Lisa was exhausted and went to straight to bed (it was 8:30). Pete and I relaxed around the table and actually talked for more than five minutes and then I came upstairs to type this (it is 11:37 Friday night. Pete is sound asleep and I am wide awake). I keep discovering things I forgot to to bring with us...Like phone numbers to friends in Westminster and Philly...please call us or my in-laws when you read this, so we can touch base if you want to get together). Thanks to my Mom and Dad for doing a favor for me!

SATURDAY 11-27-10

We were on our own this morning for breakfast. My FIL had to be at the hospital to get blood work done at 8 AM and my SIL had a therapy appointment for her back. We had a nice relaxing morning which included breakfast, washing dishes, doing lots of laundry, baking brownies, and moving firewood. Everyone returned and we had a leisurely lunch, then went to see my BIL’s new house that he just bought. He will be moving in to it in a few weeks and it is lovely. We are incredibly happy he has found a place to call his own, he has looked for a very long time and has certainly found a beauty! Next we ran a few errands and then went home to make more Christmas ornaments (even Christian made one), take a walk in the woods, work on some paperwork for the upcoming medical appointments and do more laundry, lol...a never ending chore, even on “vacation.” Dinner was delicious as always and afterwards we played a board game, made more Christmas ornaments and watched TV by the fire (Have I mentioned I have been cold since we arrived)? It was a bit bittersweet knowing Christian has to leave us tomorrow. The plan is for Pete and I to take him to the airport, leaving at 8:30 for the long drive, usually an hour long; however, because it is the Sunday after Thanksgiving, we want to give ourselves plenty of time. His flight leaves at 12:05 and we want to make sure he has time to get checked in and settled. My MIL will pick up my niece and nephew at 10 AM and bring them over to play. My children are excited, because they have not been able to see their cousins since we arrived. Pete and I will not get home until the early afternoon, I am certain. Christian will land in Charlotte, supposedly at 1:30 PM. My parents and brother have decided to pick him up at the airport and drive him back to college, so he will not have to wait three hours for the HPU shuttle. That is a blessing to us all, I don't have to worry about him being at the airport by himself for a long.

SUNDAY 11-28-10

Christian made it back to High Point with the help of my parents and brother. They encountered a lot of traffic; however, Christian was back at school and in his apartment before the shuttle would have ever left Charlotte for High Point and they fed him lunch too! We had a good trip back from the airport after we dropped him off and eagerly waited for the next phone calls to let us know what leg of the journey he was on. I know my family was tired, but I SO appreciated it! So did Christian. David, Rachel and Lisa enjoyed spending the day with their cousins.

MONDAY 11-29-10

We had a great day on Monday, although we missed Christian. Meemaw treated us all to lunch at McDonalds (actually she sent all of us with Aunt Susan) and it was a treat...the children were able to get anything they wanted,lol. Then we went to the Mall and walked around for a bit of exercise. Late in the afternoon we went to look at something with my in-laws that I will share later. It is for them and I have not had a chance to ask if it is okay to share that yet or not...We had a nice, quiet dinner and great visit before bed.

TUESDAY 11-30-10

After a tedious trip in pouring rain and many twists and turns through lots of country and small towns Pete, Lisa and I arrived at the Hotel at 12:30 PM today to check in. We were a bit early, so Pete and I went to find his doctor’s office to know where we should go in the morning and stopped for some VERY expensive gas. The front desk allowed us to check in early, which was a great thing. The front check in girl had made a mistake and not put us in the correct upgraded room, then told us basically sorry that is all she had. The manger came out to help us and we discovered it was indeed all her fault, because instead of acknowledging the special instructions on our reservation, she had simply put us in a room, that was not large enough for three. After some maneuvering around by the manager (Eric, who was wonderful), they got us in a room in the tower, just like we had reserved with our sweet new friend, Jacqueline. We had the pleasure of meeting her in person and she was so warm and caring! Pete and Lisa are downstairs swimming in the indoor heated pool and I finally finished getting everything organized. I am happy to be in out of the rain and Thankful for a safe arrival to the hotel. David and Lisa were looking forward to some adventures with Aunt Susan and Meemaw. I am happy to say my Dad-in-law looks better everyday, Praise God! He had us all worried! Praying you are all well and I will update tomorrow if I have time. To those who left us wonderful and warm messages THANK YOU, it was so fun to read them when I FINALLY was able to log on! Continuing to ask God to bless this family, this is a very important next few days for us all.

---

Tuesday, November 23, 2010 11:29 PM EST

SO MANY have had a hand in helping us put the finishing touches together for our long journey which we will embark on tomorrow. At the risk of forgetting to name everyone, I will simply say once again a HUGE heartfelt Thank you to all who have had a hand in getting us to this point. It ALL made a difference: the messages, phone calls. visits, gifts, hotel discounts and PRAYERS! You all listened with your heart to what God asked of you and you answered Him in ways I could not even hope to imagine.

Today was an example of what I mean. I had so many phone messages of encouragement, my parents came to assist getting the van and to take Bandit home to babysit, Marilee and David made sure Christian got home safely, and what can I say about the men where we picked up the van? NEVER in my life had I seen so many faith filled men, who were not afraid to share their love of God and treated us in the most kind and caring of ways. The van is wonderful, drives like a dream and is BIG! Both Christian and David have plenty of leg room (they are both over 6 feet tall) and the cargo area held all of our luggage (6 suitcases of clothes, 2 suitcases of medical paraphernalia, snacks, odds and ends, c-pap machine, plus more) AND the wheelchair...it was SUCH a relief to have it, my van was making weird noises yesterday and this morning and Pete’s car didn’t want to start when Rachel needed to go to guitar lessons tonight. It was so good to be able to give him the keys to the loaner van. David had a great time at the Fire Station (some wild calls....somebody drove a car into a house, and his group of guys had to go to fire station 11 to cover calls because those fire fighters were out on other calls...). Lisa also had speech today and was able to take a nice long nap this afternoon.

I will update the website while we are out of town, thanks to someone’s generosity (they wish to remain nameless). We don’t have computer access at my in-laws; however, if I can figure it out while we are at the hotel, I will be able to fill you in then.

I sent an email to some of you with this next information and wanted to post it here as well. As you celebrate with your families during this holiday, I ask you to continue to keep our family in your prayers. We will leave tomorrow (driving) for Maryland to spend the holiday with Pete's family. Christian will fly back to NC on Sunday 11/28 (His classes resume 11/29). Pete, Lisa and I will leave (driving) on Tuesday November 30, heading to Reading, PA to see a new specialist for Pete on December 1. You may remember that he has a pituitary adenoma and secondary (benign) brain lesion, diagnosed just before Lisa was born in 2003. This trip was planned in September (The doctor has a long wait for appointments, due to his reputation). After Pete's appointment on December 1, we will travel to Philadelphia for multiple cardiac appointments for Lisa at the Children's Hospital of Philadelphia (CHOP). This is where she had her last two open heart surgeries. A cardiology appointment here in Charlotte (in October) revealed that her heart has had some major changes and the time has come to see if she is large enough for her fourth open heart surgery. She will have evaluations on December 3 to determine what needs to be done, based on the ECHO and Cardiac/Exercise Stress Test they will perform at CHOP. Hopefully we will have an answer before we leave CHOP on December 3, most likely we will not know until the surgeons have time to convene to discuss her case. We will leave Philadelphia on the morning of December 4 and travel back to Pete's parents for the night, so we can pick up David and Rachel, who will be staying with Meemaw and Pumpaw while we are on our medical portion of the trip. We will leave Maryland on December 5, arriving back in Charlotte late that night. On Tuesday, December 7, I have to take David back to his doctors in Chapel Hill. If you have time, please feel free to leave a message in the guestbook.

You can see this is a very travel intensive odyssey, with our family once again being pulled in many directions. We ask for God's continued mercies in our lives. There truly is no doubt that HIS hand is at work in all that we are doing on this journey.  If I only had time to share it all with you, to show you what grace He gives us each and every day...it truly IS amazing to witness and can only be defined as God. PRAISE HIS NAME!!!

May your Thanksgiving be AMAZING and GOD-FILLED!!

Know that the LORD is God. It is He who made us, and we are His; we are His people, the sheep of His pasture.
Enter His gates with thanksgiving and His courts with praise; give thanks to Him and praise His name.
For the LORD is good and His love endures forever; His faithfulness continues through all generations. Psalm 100:3-5

---

Monday, November 21, 2010 2:59 AM EST

For the first time in MONTHS I have answered all of my emails in my inbox. If I owe you an email, it has been eaten by the computer gremlins...forgive me! Please let me know if I have missed anyone...also, I do NOT Facebook, someone asked me why I didn't friend them...I don't have time at the moment to be a part of that...maybe someday....

SOOO much to do that I am STILL up trying to get things accomplished. I wanted to share some GREAT news though. My friend’s husband is going to bring Christian home tomorrow (Tuesday) for me. That is a HUGE blessing to me, because that frees up at LEAST three hours to tie up some loose ends. We have added both speech and another appointment to the day, so this is indeed a blessing, because I honestly had no idea how I would fit it all in. David is going up to pick his daughter up from college (she attends a school near High Point) and will swing by to get Christian (Christian, call me so I can give you the latest update on time). My friend stopped by yesterday and brought bags of clothes for Rachel, There were also some books and purses, so Lisa enjoyed the goodies as well.

Lisa is doing well overall. Her INR was down on Friday; however, barely within therapeutic limits. You might remember she was MUCH too high on Monday. It was her BP that was disturbing at 146/88 and 136/84... I am watching her. She still has moments of extreme fatigue; however, those who know her will tell you that doesn’t slow her down much.

Rachel worked the dog show Thursday, Friday and Sunday (Pete worked Sunday as well). She had dog training Saturday, David had woodworking. We were given 4 tickets to the Fisk Organ dedication concert at St. Peter’s, where the girls attend choir school. David and Lisa didn’t feel like attending so we let Rachel bring a friend. The music was glorious and even though I had a million other things I should have been doing, it was a peaceful time to sit and listen to some beautiful music and a very unique opportunity, the installation of these organs is a rarity. The girls decided on an impromptu sleepover as we were driving home, so we stopped to get clothes and Rachel’s friend worked the dog show Sunday also.

Please pray for my Dad-in-law. He has pneumonia and is not feeling well. Also, my Sis-in-law has started treatment for her back. My Mom-in-law called to finalize plans and to tell me the weather is predicted to be cold and rainy as we journey up Wednesday and all day Thursday...I feel the cold already....brrrr. Lynn, I am glad Ed is safely at home and hope he feels better soon.

I plan to update again before we leave Wednesday. Praying everyone's week gets off to a great start and you remember to count your many blessings this week. Even in the midst of the darkest of days, there is usually something you can find to Thank God for.

---

Wednesday, November 17, 2010 11:56 PM EST

This will be a very short update. The days are running together and I have so much to do before we leave town...I need THREE of me...anybody know how to clone? Rachel is working the Dog Show at the Cabarrus County Arena tomorrow and Sunday. She wanted to work all four days; however, I do not have the ability to get her there each day. Lisa has speech and a doctor’s appt. tomorrow and another one Friday So much more is going on as well...sigh. Saturday is woodworking, 4 H and dog training, Monday is three MD appts, choir and woodworking. Tuesday is David working at the Fire Station, PT and Speech, pick up the van, pick Christian up from school (anybody free to give me a hand with that one?), pack the car and get Rachel to guitar lessons. Wednesday Pete will work half the day and then we are OFF! (If you think we are busy the next five days, you should see the week we get back from Philly...I shudder just thinking about it)!

I forgot to share that Rachel was voted the Secretary/Treasurer of her 4H club this past Saturday...Way to go Rachel! That is quite a big responsibility for such a young lady. We LOVE her 4H group and the leader, Ms. Donna is amazing. I know I have said it many times before about her; however, it can’t be said enough.

This is for my Z family....THANK YOU!! You know why and we love you! The children loved the Thanksgiving goodies!!!

God Bless each and everyone one of you who has prayed, signed the guestbook and been there for us. We love you!

Monday, November 15, 2010 11:16 PM EST

Another busy day...and they are getting busier as the time to go to Maryland/Pennsylvania draws closer...I thought I had Friday free (It would have been the first day I didn’t have to go anywhere since the last time I reported that phenomenon. So many weeks ago now, I have lost count of the endless days in a row that have consumed us). At Lisa’s hematology appointment today, her INR level had jumped high again...we will return on Friday to see if we have been successful in bringing it to a therapeutic level again. Maybe if I hold my mouth in just the right position, it will behave itself? That makes as much sense as anything else we do....

Rachel had a friend over today, before I took David to Pete at work for his woodworking and the girls to choir. Overheard at the table while the three girls were having a snack: Friend to Rachel~You mean you will be gone for two weeks at Thanksgiving, I am going to miss you. Lisa chiming in~ I will miss you too. Friend: Me too. Why do you have to go away for so long? Lisa~ they need to see if I need a fourth open heart surgery yet. Slight pause...You know, I am really freaking out about another open heart surgery. Mom (me) stepping in, pulling up a chair right beside Lisa, hugging her and asking a few questions...asking what was bothering her. She said the thought of her chest being wide open where you could see her heart seemed so weird. Me explaining that this first journey is just a fact finding mission, and reminding her of the sequence of appointments, assuring her that when the time comes, she is fortunate that she has the BEST cardiothoracic surgeon in the world to operate on her, along with the best team in the world to care for her. That she will get lots of presents and special attention and that she will have her own private duty nurse, 24/7. I asked her if she knew who that was and she said WHO, her eyes SO big? (I was weaving a comforting story, remember). I said ME!!!! and I got the biggest grin in the world. Then I asked her how she was feeling now and she said...Much better, Then their friend said~ You are so lucky! It seems I can make ANYTHING sound fun and exciting, lol! Now, I wish someone would comfort ME about the whole thing! I checked with Lisa again when she was getting ready for bed, to see if she had any more concerns or worries. She assured me she didn’t and that she was feeling okay about everything.

Special thanks to S, G and E...you know why...S, this update is for you!!!

Though you have made me see troubles, many and bitter, you will restore my life again, from the depths of the earth you will again bring me up. You will increase my honor and comfort me once more.I will praise you with the harp 
for your faithfulness, my God; I will sing praise to you with the lyre, Holy One of Israel. ~ Psalm 71:20-22

If you aren’t already on the list for update notifications and would like to be added, please let me know.

---

Tuesday, November 9, 2010 11:07 PM EST

I am extremely happy and excited to say we will have SAFE, RELIABLE Transportation to Philly! I am not at liberty to share WHO is responsible for this 2 week gift; however, I will say she has worked tirelessly since May trying to get someone to give us a van (yes, GIVE us a van...she has written letters, emails, made lots of phone calls, and more). While we are not able to keep this van after our journey to Maryland/Philly...I am extremely grateful for the assistance and the fact she has not given up in her quest to help us procure a vehicle. The relief is immense to know that we have this vehicle for our expedition!!! Our plans are falling into place as this trip draws closer. It DOES help lessen the worries as we can concentrate on what the doctors will say, instead of how we will get there and where we are staying. There are enough worries with the medical issues, without worrying how to pay the immense traveling bills as well.

Lisa’s INR (coumadin level) was therapeutic; however, had fallen quite a lot since last week...it is so very difficult to get this right in such a young, growing child. David received his IV iron without incident and had actually gained two pounds...which is a BLESSING! He started his new medication for his face...I do have to share, his face has been looking better since I had him put Holy Water on it. I know there are those who will shake their heads in disbelief; however, I am here to tell you that within 36 hours of applying it to the painful lesions three weeks ago, David’s face began to look better...not just noticeable by me, but several of his doctors who asked me what we had done.

Please keep my sis-in-law in prayer, she is having an exacerbation of a back problem that caused her a lot of problems last year. I ask for you to agree with me in prayer that she will have healing to prevent surgery!

We are babysitting my Mom and Dad’s dog starting tomorrow. They are going to the mountains with my sister, visiting my niece at college. Bandit will be in dog heaven, he LOVES Squeaky! My parents will return the favor in two weeks while we are on our journey. Rachel is the most excited I think, she loves to train Squeaky, who is quite obedient to Rachel.

To those who have reached out to us with supportive messages, prayers and in many tangible ways...I THANK YOU and so does our Heavenly Father! It brings a measure of peace in a sea of chaos...God Bless You!

If you see your fellow Israelite’s donkey or ox fallen on the road, do not ignore it. Help the owner get it to its feet. ~ Deuteronomy 22:3-4 

“‘If any of your fellow Israelites become poor and are unable to support themselves among you, help them as you would a foreigner and stranger, so they can continue to live among you.” ~ Leviticus 25:35

By the God of your father who will help you, And by the Almighty who will bless you with blessings of heaven above, Blessings of the deep that lies beneath, Blessings of the breasts and of the womb. The blessings of your Father have excelled the blessings of my ancestors, up to the utmost bound of the everlasting hills...~ Genesis 49:25-26

---

Sunday, November 7, 2010 11:08 PM EST

Thanks to having an extra hour today, I have time to update. Christian was home for the weekend. David and I picked him up Thursday night on our way home from Chapel Hill. It was nice he could be here, we probably will not see him again until we go to Maryland and Philly for Thanksgiving and all of the medical appointments.

David’s appointment in Chapel HIll was an all day affair. He will start a new medication for his face tomorrow, if the insurance will approve/pay for it. David asked the doctor about the scarring on his face. He told David once we got his face cleared up we could work on the scars. Then he told David how expensive the treatments are and that insurance would not cover it...WHY do they insist on saying things like this to a young man. David fretted about the money the rest of the day. I told him to NOT worry about it, when the time came we would figure it out. The other thing that upsets me is when someone tells David he will be so handsome when his acne clears up...HELLO, these people should know better! I corrected THREE people in the office that day...the MOA, the resident and the lab tech...I informed them David was already handsome, clearing his face would just help the physical pain he feels. He has to get IV iron tomorrow. I hope it makes him feel better and helps some symptoms he has been having.

Lisa has not been feeling up to her usual spunky self. I have noticed a tiredness, accompanied by a bit of weepiness...it is uncharacteristic, so I am watching her closely. I hope she doesn’t come down with the crud Pete and I have had. Her INR was quite high last week, we have adjusted her coumadin levels and she will see the hematologist tomorrow.

Rachel will go swimming tomorrow afternoon (inside of course, right now it is 36 degrees outside, brrrr!) with a friend while we are at the appointments tomorrow. She is looking forward to it and it is a special treat for her to not have to make the rounds with us. I will pick her up around 5 and then she and Lisa will have choir, while David is at woodworking.

The rest of the week is full of typical appointments/classes/lessons. In addition, David has a special Fire Fighting Team-building activity on Thursday, I am doing a focus group (it pays $40!), David and Rachel have a “Mexican Fiesta” activity with friends on Friday and Pete has inventory Thursday, Friday and Saturday.

Now I have a special THANK YOU to “A Friend”. I have no other way to Thank You since you prefer to stay anonymous (very selfless, I might add). Your generosity will certainly go a long way to help fund our medical travel later this month. May you ALWAYS feel God’s Blessings for your kindness and generosity! It keeps me guessing who you are, that is certain. I know you are local, because you hand delivered it while we were out of town Thursday....THANK YOU YET AGAIN!

...“Go in peace, for we have sworn friendship with each other in the name of the LORD, saying, ‘The LORD is witness between you and me, and between your descendants and my descendants forever.’” ... ~ 1 Samuel 20:42 

“This is My commandment, that you love one another as I have loved you. Greater love has no one than this, than to lay down one’s life for his friends. You are My friends if you do whatever I command you.” ~ John 15:12-14

Even though we speak like this, dear friends, we are convinced of better things in your case—the things that have to do with salvation. God is not unjust; He will not forget your work and the love you have shown Him as you have helped his people and continue to help them. ~ Hebrews 6:9-10

---

Monday, November 1, 2010 10:39 PM EST

I have so much to share and so little time! Christian was home for the weekend and I took him back this morning before his first class. Halloween was fun for all. David was our official candy giver this year and my girls were beautiful as a pink Cowgirl (Lisa) and a Rock Star (Rachel). I hope to post photos soon, they were gorgeous, of course and had an amazing time.

It seems my last post confused some. Lisa needs surgery...period. What isn’t so clear is when. We need to find out if she is large enough for an adult mitral valve to be placed. If so, they will want to schedule it after the cold and flu season if possible. At least that is Dr. G’s preference. No need to invite extra problems with additional germs at the hospital. If Lisa isn’t big enough, the hope is she will be soon. Dr. G made it exceptionally clear that she needs surgery and his preference is sooner vs later based on her ECHO values/numbers. I would try to explain it better; however, few of you would care to follow the intricacies of what was said. Of course, this could all be changed when we see the very learned scholars at CHOP...which is why we are traveling so far away and spending so much money to do it...they ARE the best.

I have our hotel near Pete’s MD and in Philly reserved. Both hotels have been exceptionally kind in making arrangements and providing upgrades (breakfast, refrigerators, reduced rates, free parking. They are STILL expensive for us though). The hotel in Philly is also holding the room for us for the last two nights in case the Ronald McDonald house is unable to accommodate us. We hope the RMH can squeeze us in though, it will be a LOT cheaper. Thank you to both Jacqueline and Kate for your help, concern and compassion. My next goal is to try and locate a great deal on a van for two weeks...it is desperately needed. Dolly, I tried La Quinta . It was a great suggestion; however, the closest to either MD was an hour away. Karen, I was too afraid to gamble with Priceline...let me know if you do try it and are successful. I was afraid where we would end up since I couldn’t be assured of the location until we paid upfront.

We have a normal busy week/activities ahead. Please agree with me in prayer that Lisa’s INR is stable and high enough not to worry...but not TOO high! (That appointment is tomorrow). David and I will go to Chapel Hill on Thursday for his appointment with the skin doctor. Lisa and Rachel will spend Wednesday night with my parents, so they will not have to spend the entire day in the van. Please pray for our travels and my van.

Marilee, we would LOVE the clothes for Rachel, THANK YOU! To all of our GB supporters THANK YOU for the uplifting messages!

I will update soon. Thank you for your support and prayers. I am actually quite calm as I put all of the plans into place.

My heart is not proud, LORD, my eyes are not haughty; I do not concern myself with great matters or things too wonderful for me. But I have calmed and quieted myself, I am like a weaned child with its mother; like a weaned child I am content. Israel, put your hope in the LORD both now and forevermore. ~Psalm 131:1-3

---

Thursday, October 28, 2010 8:04 PM EST

I’m BAAAAACK! Over my little pity fest of yesterday and feeling MUCH better, Thank you. PRAYERS are so incredibly powerful and while I couldn’t really “talk” yesterday, you knew I needed to be lifted up....THANK YOU!

What do I want to say about the cardiologist and my conversation yesterday...there is so much and truly, it doesn’t matter ALL of the nuances. There has been one part of my heart/mind able to dismiss this trip to Philly as just another trip to discover how LIsa is doing. After all, our trip in February 2009 turned out well, after they scared twenty years off of my life telling us at Duke that if we didn’t allow Lisa to have immediate surgery she would drop dead from a sudden cardiac arrest. Words like that stop you cold. The other part of my heart/mind keeps wanting to bog down in fear at the mere thought of more open heart surgery. I left a message for Dr. G. to call me, I needed to know what HIS gut reaction/thoughts are and that waiting until December 3 wasn’t going to cause more problems. He reminded me he loves Lisa and would not do anything to hurt her. (RELIEF). The holter showed her heart rate in the 30’s to low 40’s most of the time with runs of PVCs and ventricular ectopy. (A LITTLE FEAR). He told me to call him day or night if we get scared or want Lisa to be seen. I pushed him to tell me if he thinks we are going to get the news Lisa needs this fourth/fifth combined surgery...his exact words were “If she is big enough to have an adult sized valve placed in her heart now, she needs to have the surgery and soon. If she isn’t big enough (and only the surgeon can calculate those measurements), we will have to try to get her big enough quickly.” (CALM when he said it, although I had a very sick feeling. UNREASONABLE FEAR after I hung up and every time I thought about our conversation later that day/night). After your kind words of support and all those silent prayers said on our behalf...today has been better. Trust me, I KNOW how hard it is to log on and sign GB...that is why it means so much when you are able to leave support for us THANK YOU! I say THANK YOU because I DO appreciate you all. There is more; but, you see the bottom line. I am to call with any problems, concerns, fears. If her INR goes low again, we will do a repeat ECHO although he doesn’t think the increase in mitral valve problems had anything to do with her coumadin level and that it was simply coincidence it resolved some when her level increased...I disagree with him on that; but, bottom line, it really doesn’t matter. Any worries, we call. I told him to NOT go out of town anymore and he assured me he wasn’t, then told me he actually had Thanksgiving off this year(first time in many). Then I reminded him we would be in Maryland and closer to Philly than to him which put HIS mind at ease. It truly is a blessing to have a doctor like him. Anyway, I have his beeper number which I have NEVER had to use; but, it is always a comfort that if it came down to it, I COULD reach him at any time or place I needed him.

I love our pulmonologist too…Rachel’s pulmonary function tests looked MUCH better today after being on the steroid inhalers. He isn't ready to say Rachel has asthma yet (she has been treated since February as you know); however, he thinks it is a strong possibility. He made some suggestions for her to get some relief as she sings, sleeps, etc. He thinks this was all triggered by her Mono this past winter. As for Lisa, he gave me some suggestions on how to help her breathe better and get some relief from her allergies/stuffy nose. There are things to know with the c-pap machine that no one has ever told me in the event Lisa is hospitalized. Then he said let me check you out Mom. I have not been well for about 10 days. I have had laryngitis since last Monday, although it has been much better since Saturday. He thinks I have parainfluenza, a fancy name for a type of virus. He told me a few things to make me feel better and hopefully I will not share it with the children. So it was really 3 patients for the price of one. Plus he gave me two prescription samples for Lisa and three for Rachel...enough for two months, woo hoo! (Inhalers are expensive).

I am feeling a bit happier since I logged in and saw the messages, so THANK YOU for making me smile. All I really need is for Lisa to be well. As Dr. B said today “Lisa is tough and strong but enough is enough!” I agrees; but, the sad reality is Lisa will ALWAYS have a Complex heart. But I am Thankful and so incredibly Blessed! If I had a quarter for everybody who tells me LIsa can’t be ill, she looks too good...and so normal. HELLO, she IS normal! She is a child FIRST, a patient second! While she is not doing well inside her body, she looks great to casually look at her, which really IS a blessing! Lisa still has a joyful spirit and that makes me happy. She is an amazing little girl who has touched many hearts.

I know at times our lives appear chaotic...I firmly BELIEVE this is why:

But if from there you seek the LORD your God, you will find him if you look for Him with all your heart and with all your soul. When you are in distress and all these things have happened to you, then in later days you will return to the LORD your God and obey Him. ~Deuteronomy 4:29-30

Be careful to follow every command I am giving you today, so that you may live and increase and may enter and possess the land that the LORD promised on oath to your forefathers. Remember how the LORD your God led you all the way in the desert these forty years, to humble you and to test you in order to know what was in your heart, whether or not you would keep his commands. He humbled you, causing you to hunger and then feeding you with manna, which neither you nor your fathers had known, to teach you that man does not live on bread alone but on every word that comes from the mouth of the LORD. ~Deuteronomy 8:1-3


Wednesday, October 27, 2010 8:24 PM EST

Lisa’s cardiologist and I had a 25 minute phone conversation today. I will try to update what he said later, I simply don’t have the energy or the words right now. I am waiting on Rachel to get out of theater class. Rachel sees the pulmonologist tomorrow…I am taking Lisa with us to try and squeeze two in for the price of one (I have some questions for him). There is a LOT going on here (I know, what’s new). Terrible storms have been all around and tonight the big window in our den began to leak a LOT of water (I heard it pouring in, hitting my poor, broken down loveseat and worn out carpet…just what they needed). And what do I need? My daughter to be healed…that is all…

Sunday, October 24, 2010 6:24 PM EST

The website tracker shows a couple of people have come by so I guess I will update for those few who are checking in. Even when you don’t sign the GB, I DO know who has been by and when. Christian is back at school and I miss him already. It was fabulous to have him home and we tried to simply enjoy each other in between the medical stuff. Pete took the children to a fun day at the McGuire Nuclear Station yesterday (fishing, archery, demonstrations, food and more…I have pictures I hope to post soon). I didn’t go, I have had a wicked sore throat and laryngitis (since Monday night) and Pete generously shared his cold with me…thanks honey. So far, the children have not been sick, Praise God and we hope it stays that way! I had a fever, so it was best for me to not share my germs with the world yesterday. If someone had been that thoughtful around me, I wouldn’t have been sick either…

Lisa’s kiddiegait leg brace ( http://www.allardint.com/pdf/KiddieGAIT.pdf) came in, along with her shoe lift for her right leg and her orthotics for both feet. She took to it quite well and was actually quite giddy and excited. Corey said he couldn’t ever remember having quite that reaction to a child getting a brace on their leg. I made a big deal about it for Lisa, talking about how special it was and how it would help her not fall as much…she WAS excited and has adapted well to the extra time it takes to putting everything on and being “bound up!” She has only fallen once since Thursday and THAT is a blessing!

Lisa is still not feeling great; however, we are simply trusting God to keep her safe as we wait for our appointment in Philly. She actually remembers our trip up there last year in February, 2009. It became evident she did (we weren’t sure), when she named off who she met and wondered if they would come to see her this time…No pressure Alice, Steve, Deb and Wylie! Although, anyone who wants to visit is welcome…The plan appears to be that we will be in Maryland for Thanksgiving from November 24th (close to midnight) to December 5. Christian will stay until November 28, then fly into Charlotte, catching the shuttle back to HPU (cheaper than flying to Greensboro…it USED to be people drove to Greensboro for cheaper flights; however, now that WE need it, it is just the opposite, sigh). If all goes as planned, Pete, Lisa and I will leave Maryland on Tuesday (David and Rachel will stay with my in-laws) and spend the night near Pete’s new doctor in Pennsylvania, then we will head to Philly for three days…That is the easiest and cheapest route to us driving back and forth, especially since we might not be able to procure a rental van this go round (anybody have any connections to a place to rent a van for two weeks cheap? How about hotel rooms)? That being said, if anybody wants to see us on our northern travels let me know, Lisa is ready to see everybody! Kristin, much as I would love to get that hug in person, I DO hope we are gone by the time you all have to travel to CHOP!

The coming week is more of the same: MD’s, therapy, choir, ballet, woodworking, guitar, theater, aviation, 4H, dog training, firefighting, etc. David and Lisa see the hematologist tomorrow…please agree with me in prayer we will not have any nasty surprises!

Lynn, you are funny…of course we have computer people who can get rid of viruses in NC…you also have to pay them to do it and with the Washer and Dryer both going out, added MD and therapy expenses, not to mention new braces, lifts, shoes, etc and the added expense of going back to Pennsylvania…some things have to be put on the back burner for awhile. My dear, sweet friend, I know you DO understand and were hoping someone might make a suggestion to me on how to do this! I am happy yours was a simple, inexpensive fix…I MISS YOU when you don’t come by, you are always so faithful!

Thank you for continuing to lift us up, we love and care for you all. God is good and has brought us an amazing group of people to pray for us, God Bless you!

---

Tuesday, October 19, 2010 4:55 AM EST

Lisa’s INR was back within normal limits Monday, Praise God! Later at the cardiologist, her ECHO showed that while her heart looked better than it did on October 14, it wasn’t quite as good as it had been on October 4. That is the day they realized her heart was definitely not working as well as it had. Yesterday’s ECHO was another, Praise God moment though, because it meant we didn’t have to rush to Philadelphia this week or next. Let me say it again, PRAISE GOD!!!!!! PRAISE GOD!!!!! PRAISE GOD!!!!! I also picked up a copy of Dr. G’s latest office note and had asked for a copy of the October 14 ECHO, so I could compare the differences. As I compared, everything looked identical...then I realized the ECHO report was from the 4th of October as well. I will get a copy of both the October 14th ECHO and yesterday’s to compare. There are always nuances they don’t tell me, such as the fact that Lisa’s left atrium has slightly enlarged. In and of itself, that is okay, combined with the other things that have declined in her heart, it lets me know we definitely may be looking at surgery sooner (within the year) versus later (three or four more years). Seeing the ECHO report from yesterday will be telling as well. Also, the ECHO’s they do in Philly are more sophisticated, so it will definitely give a better picture.

As for Lisa’s INR...I hope they will FINALLY give credence to the fact that we MUST be more aggressive in keeping Lisa’s INR out of the low range she has been floundering in! I have told them repeatedly that the LOWER her INR is, the worse her fatigue is! They kept telling me there was no research to support that. I said anecdotally, this is what I see with Lisa...they would look at me sometimes as if I had three heads and they couldn’t understand how her low INR would cause a problem (same old story, if they don’t know, concerns are dismissed). NOW I have PROOF I am not crazy (at least not about that :o), her ECHO proves that when she is decreased in her coumadin levels, there is turbulence in the mitral valve!

Our cardiologist is out of town, so we saw Dr. H again. I asked him how to prevent this from happening as we wait to go back to Philly and he said keep her coumadin level stable...easier said than done, especially in a child. He knows that as well, we have all discussed the problems of children and coumadin, it is VERY different than coumadin in adults. It is also VASTLY different in a person receiving it for a mechanical heart valve, versus other reasons (a double whammy). We are waiting for the results of the holter monitor, it was sent back Saturday, which means it was really sent off yesterday...IF the rate and rhythm are okay (we already know Lisa has bradycardia, we need to determine if anything else has changed) we can wait for our December 3 date to see Lisa’s MD in Philly. I also have to monitor her closely here at home. Her BP was up quite a bit yesterday at both offices and her heart rate was in the low fifties, this in spite of the fact she was playing and laughing (she was feeling more like herself yesterday, although still tired). As we were waiting for Lisa’s ECHO, the Philly Ronald McDonald House called. Of course, they can’t tell us until the day we check if if they have room for us; however, they at least have us on the books as needing a room on December 2. It can go either way, we have had mixed results on if they could accommodate us in the past, that is always a worry/concern. Hotel rooms in Philly are quite expensive, as you can imagine.

After being away for a month, it is wonderful to have Christian home with us! It is also a bit strange, at least it was at first. We all would forget he was here at different times (especially the children) and then he would pop up and we would be happy to see him! Rachel and Lisa’s concert was amazing Friday night, the choirs gave BEAUTIFUL performances! It was a LONG night (four hours of dressing, rehearsing and then concert; however, everyone enjoyed it...even my tired little Lisa). There wasn’t any 4H or dog training on Saturday, so that freed up a lot of time. We went to the Fire Station Open House for lunch and to see how hard David was working. I have a few pictures, maybe soon we can download them :o). We had movie night on Saturday night, we were thankful Christian included us in his plans and joined us! Sunday afternoon Pete and I had some things we needed to take care of and the children enjoyed playing outside in the gorgeous sunshine. I also went to see a friend’s child who fell out of a tree and I think I cheered her up a bit. She will be in a wheelchair for awhile (broke her femur and needed surgery with pins and screws. She actually saw Lisa’s orthopedist). Please keep her in prayer as she heals. All in all a good weekend, with the reminder in our minds that more looms on the horizon. For the most part, we were able to keep the fears at bay and just enjoy each other...what a blessing to know God is in control!

---

Thursday, October 14, 2010 11:45 PM EST

The week has been insanely busy with even more added to our plates than usual. In addition to typical therapy appointments, David worked at the Fire Station on Monday, took the PSAT’s on Wednesday (He and Rachel spent the night at my Mom’s house, arriving late d/t their nightly activities ~Thanks again Mom!) since I had to take Lisa to PT and to get fitted for her new wheelchair). All of David’s Explorer Posts are meeting this week. The girl’s have had extra choir practice every night except for Wednesday for their concert tomorrow night. Also, their OT’s have added therapeutic listening therapy to their home schedules which is 20 minutes twice a day…EACH! I am also spending 30 to 45 minutes every day on Lisa’s new physical therapy exercises. We added an extra MD appointment today to have Lisa’s Holter (cardiac) monitor placed to wear for forty-eight hours. She will have to wear it for her first concert, poor sweetie. She hasn’t been feeling well either. She has gone back to 2 to 4 hour naps most days. We went to the hematologist today after she had the Holter placed and all Heck broke loose. Lisa had been doing fine, playing and happy in the exam room. I had concerns because she had gained 3 pounds in 6 days (concerns over fluid retention) and her INR was back down to 1.5 (much too low), with no changes to her coumadin this past week. The next thing I knew, she was weak and exceptionally sleepy. We had some worried moments as her BP shot up and she seemed to have some “neurological deficits” per the hematologist. Her oxygen saturation was fine. They did a stat CBC and it was also fine. They had us go to the infusion side of the clinic (much homier and comfy” and allowed Lisa time to lie down and watch TV while they monitored her, per the cardiologist request (Our reg. Card was working in a different city today) They were considering putting Lisa in the hospital for the night so they could watch her…After a late lunch, they sent us back to the cardiologist office. By this point, Lisa was starting to feel better, although still weak eyed and tired. The ECHO was disturbing in the fact that since October 4, she has had some noted changes to the mitral valve and lots of turbulence to the flow pattern. They HOPE once they get her INR back on track the mitral valve will improve enough to wait to go to Philadelphia. They did allow me to bring her home and she felt better this evening. I am to watch her closely this weekend and return on Monday to the cardiologist for a repeat ECHO and the hematologist to see if her INR is better.

They have been great keeping me up to date on the process of getting Lisa scheduled to return to CHOP. The scheduler was out last week (received a call Friday so I would not worry over the weekend…as I told Dr. G when he told me not to worry at our appointment last week, you might as well tell me not to breathe). Tuesday I received a call from the sweetest nurse who told me our Doctor at CHOP was the new medical director of cardiac care and transplants and while she didn’t have typical clinic days any longer she definitely wanted to see Lisa on the two days I had inquired about (December 2 and 3). Dr. R in fact had just had us on her mind/heart LAST WEEK and wasn’t surprised to receive the call that Lisa wasn’t doing well. I know some of you will understand that connection, if you have never had that experience it will not make sense to you. We returned home after a long day on Wednesday to the message that they had scheduled Lisa for an ECHO and other testing on December 3 and then we will see Dr. R. THEN I began to worry that we are putting it off to long. I had a specific reason for asking to be seen the week after Thanksgiving, which I will share now.

Pete has FINALLY agreed to go back to the MD to see if they can help him with his pituitary adenoma and the growing list of symptoms he is experiencing. This doctor is quite renowned in the field and the wait to get in was long. Pete’s appointment is scheduled for December 1. We decided to go up to Pete’s parents for Thanksgiving and then take Pete to the doctor that Wednesday (This MD only sees new patients on Wednesdays). We are working out details about travel, hotels, looking to see if we can rent a van for a deal…trusting God to work out all of our needs.

David also saw the dermatologist on Tuesday. She wants us to go to Chapel Hill so they can evaluate David’s face and the troubles he is having with his skin. That appointment has been scheduled for November 4. I have to say, when she told me, I just stared at her in shocked disbelief…I mean really, can my children get ANYTHING that is simple and fixed easily…without having to drive hours up the road to have more learned specialists take care of them?? Am I really expecting to much here?

I hope this update makes sense, I am tired and it is late. The week has been long. The happy news is, Christian is home for a week for Fall break, I picked him up tonight while Rachel was at choir practice and he doesn’t have to return until October 24. It feels good to have all of my little chicks home with us!

If anyone wants a Christmas wreath from the girls choir, please let me know…they can even be shipped directly to your home. The deadline for that is October 24. Make checks payable to me…Let me know if you want more details. I will get back with you as soon as I can, I am still not able to use my computer. Also, if you are in the area, Fire Station Number 7 in NoDa is hosting an open house October 16 from 10-2 if anyone wants to go! Free food and you get to see David looking so handsome!

The LORD is a refuge for the oppressed, a stronghold in times of trouble.
Those who know your name will trust in you, for you, LORD, have never forsaken those who seek you. Sing praises to the LORD, enthroned in Zion; proclaim among the nations what He has done.

---

Tuesday, October 5, 2010 8:30 AM EST

I still do not have a working computer (or dryer), so this will be short. We need prayer, lots of it please! Lisa’s cardiology appointment yesterday went as I expected. The pulmonary stenosis has gotten markedly worse in the past five months. Her mitral valve is working less efficiently, due to her growth (which we knew would happen, we just didn’t expect to see such a large change in such a short time, we expected it to be more gradual). Dr. G is sending us back to Philadelphia (CHOP and all our friends, here we come)! It will not be quite this quickly, as experience has shown us, nothing moves fast if it isn’t an emergency and based on what we know this is NOT an emergency. That being said, Dr. G also wants Lisa to wear a Holter Monitor for 48 hours (they are usually 24 hour events, so we have to wait for him to get a 48 hour monitor in stock). IF her rate or rhythm shows a great cause for alarm, then of course we will be going sooner. Otherwise, we are hoping to do this the week after Thanksgiving (we have a reason for this timing I will share when I have more computer time). My concern is, Dr. G feels she needs a cardiac cath. Experience on this once again shows us a one day cath can take us nine days to accomplish because of Lisa’s need for coumadin and having to wean her to heparin. I was not caught off guard this time, I have known since Labor Day this visit would show a decline in her ECHO numbers. The happy news is the FUNCTION of the heart atrium and ventricles is good, it is all of the valves, etc. leading in and out (and inside of her heart) causing problems. I began to notice at the end of July things weren’t as they should be. I kept hoping it was the weather or Lisa’s hypoventilation/faulty c-pap machine. Sadly, it was not, those would have been easier fixes…Someone asked me last night at choir if surgery is imminent. We don’t know and will not know until after Lisa sees the CHOP docs. Dr. G told me to call him late next week if I haven’t heard anything by then. In the meantime, we wait…and pray.

Also, we are desperate for reliable transportation if anyone has any ideas...we need to buy a van…that doesn’t come with a lot of repairs…

Sunday, October 3, 2010 2:00 PM EST

HAPPY SIXTEENTH BIRTHDAY TO MY HANDSOME, TALENTED SON! David, you have grown into a wonderful young man, with a maturity far beyond your years. I love you so much and I am incredibly proud of all you have accomplished. You have overcome many obstacles and handle health issues with dignity and grace. I love you David, may your sixteenth year be your best one yet!

Enjoy the photos of David with Rachel and Lisa and their friends…and some of David at the Fire Department open house yesterday. I met one of the Deputy Chiefs and recognized his last name. His wife was David’s kindergarten teacher. I pointed David out to him and he told me he had met him earlier in the day, and he thought he was sharp. Then he asked me if he wanted a job and of course I said YES. He thought David was already 18! He said to keep David active in the Explorers and to stay in touch with him…he does all of the hiring for the Charlotte Fire Department! The Deputy Chief had to be interviewed on camera for the news; however, afterwards he offered my Mom and I a guided tour of the new Fire Station. It was wonderful, we had never had such access to a Fire Station before…Firemen have been my heroes since our home burned down when the boys were small…They saved two very important photos for me…our wedding picture and a photo of David (age 1) and Christian (age 5) dressed as cowboys.

Let the party begin!



Good Friends!



Lisa ready for some cake!



Thinking of a great wish!



Rachel and Afton (Afton is older than Rachel. My children are just tall).



Tooting their own horns.



It is hard to believe that Mackenzie, David’s friend is the second oldest child in this picture (David is the oldest).




David performed many duties yesterday at the Fire Station open house. He served, cake, drinks, answered questions, gave tours, took out trash and thrilled the children with the chance to sit inside the Fire Trucks. Here he is after assisting a child into the cab of the engine. He is making sure she doesn’t fall out and get hurt.



A big smile for Mom.



Helping another little boy into the cab.



Answering more questions for a family.



Taking time to answer a child’s question.



Lisa last week before ballet class.




Saturday, October 2, 2010 9:52 AM EST

If you read the September 23 update, you know how busy this week was with typical MD/Therapy appointments. Add in an afternoon of fun for Rachel with her friend, Afton on Thursday afternoon, my doing some volunteer time with the Explorer Coordinator (what an AWESOME program), buying shoes for Lisa’s new shoe lifts/orthotics and brace (more on that in a moment), and a fun activity for David and Rachel…you get the idea!

I will start with the positives. Everyone except Christian has received their flu shot. Christian was unable to come home this weekend; however, he will get his at school on October 6...yea! They didn’t charge as much as our MD last year, so hopefully the expense will be lower this year as well.

David enjoyed his Aviation Explorer post meeting on Tuesday night. They toured the Airport on mini buses. He said his favorite part was visiting the Fire Department that is devoted to Airport Emergencies…do I see the possibility of a career in his future, combining his two loves of Aviation and Fire Fighting? He is actually at the Grand opening of Fire Station 40, located at 9720 Harrisburg Road in Charlotte today from 8 AM until 2 PM, if anyone wants to attend. He looks SO handsome in his new Polo Fire Department shirt! I need to remember to take my camera, I am picking my Mom up so she and I can attend the Open House and see him working. Pete and the girls will miss it, because they have Dog Training, then there will be a 4H meeting and the concession stand fund raiser after that. Lisa is still home with me, she doesn’t have enough stamina these days to endure such a long day so we are still picking and choosing what she can do. She LOVES working the concession stand, so it is just 4H and Concessions for her today.

More positives: Lisa’s GI appointment went well. He told me to keep an eye on her reflux, medicate her as needed for her nausea ( In addition to her prevacid). He talked about taking her G-Tube out, since she is just using it mostly for hydration. MOST of the time, I can get enough in her orally. I said go ahead, lets take it out! Then he decided he wasn’t ready and we should wait until after winter, when the threat of cold and flu season is finished…I know he is right and it truly is a better plan, she really isn’t quite ready for it to be gone…but, I was SO ready to have one less thing to worry about! Maybe in six more months…we shall see! He also had a few concerns about her heart and was happy Lisa has a cardiology appointment on Monday.

David and Rachel went to a 4 hour lunch and fun event on Friday. It was all about Italy and they had a ball, enjoying some yummy Italian food they helped me prepare. They took Italian chips and dip (scrumptious! We put real pepperoni in the dip when we made it, so yummy and the chips were also homemade). They also made an Italian Cream Cake…oh my gosh, it was good. I am happy to say only 2 slices came back, Just enough for me to have a taste and Pete and Lisa to enjoy. Rachel had a 2.5 hour choir rehearsal after that and she was one tired little lady!

Lisa had her first Physical Therapy session since insurance approved our new visits. We learned some great new exercises to help stretch out her back and help her scoliosis, as well as working on strengthening her right side. Amy said in just the month I had been working with her she was more limber in her right leg…yea! The Orthotist came to measure her for new shoe lifts (to even out her leg length discrepancy and hopefully help stop the progression of her scoliosis). I was quite irritated because he had not brought the things he needed to do that! We arranged a time for me to meet him in Concord at 2:30 PM…I explained I had to leave no later than 3:15 PM…No problem he said; however, he was 15 minutes late. THEN he still didn’t have the equipment he needed to measure Lisa (remember she has been fitted for these things for 7 years, so I do have some idea what should be done). He wanted to just go by what had been done last year and “build it up or grind it down as necessary)…I don’t think so! I have a call in too Lisa’s PT; however, will not be able to speak to her until next week, because this happened so late on Friday evening. To top it off, Lisa DOES need a brace for her right leg/foot. It is small, it will only come up to her knee…but for some reason, it makes me very sad. I KNOW it is the best thing for her and she has needed it for a long time, in my opinion. They are just now seeing what I have been saying for years about the falling and dragging the foot. I did separate out my feelings about the brace from my feelings for the orthotist…and I really DO have a right to be upset with him. If Lisa isn’t fitted properly it will cause LOTS more problems to her foot/leg and exacerbation to her scoliosis. I wanted to make sure my being upset over the brace wasn’t manifesting in my feelings of him being completely clueless…and the fact remains, he is clueless! The lifts alone cost over $500, only partially covered by insurance (at least that was last years price…who knows this year)…I have no idea how much the brace is…I don’t care what it costs to help Lisa, that isn’t my point…I DO care if he gets it wrong! When I pay that much money for something you BETTER get it right, Lisa has enough to deal with, without having to fix something that happens as a result of someone’s incompetence!

My parents are coming over later today to have dinner (actually my Mom and I are spending the rest of the day together and my Dad will join us after he works with my brother). Tomorrow is David’s SIXTEENTH birthday and we are going to celebrate my handsome son and all of his wonderful accomplishments! He wanted a low key kind of day, so that is what we have planned. He has a buddy spending tonight (Rachel has a friend joining us for dinner and fun also). Tomorrow he wants to fly his plane and we will go to Red Robin for dinner, just us (we miss you Christian)! David and I both have coupons for free entrees (This happens but once a year when the birthday coupon is good for 2 family members at the same time without expiring). Couple that with the kids menu and dinner is relatively cheap for us to eat out.

I want to Thank you for continuing to keep up with us and for signing in on the GB. In spite of my computer woes, when I get near a computer it is the first (often only) thing I look at. It is one thing for me to ask to borrow a computer to check the GB for support, quite another to hog one to check all of my emails…I hope to one day get the computer back up and running; however, I need a dryer first (Thank goodness for my washer, it has made life easier, even without the dryer)…and both the dryer and computer will have to wait for the moment…

May you feel God’s blessings in your life daily. I know I do!

---

---

---

Click here to go back to the main page.

Click here to view older journal entries.

----End of History----