Thanksgiving 2010 Update

This is a pretty typical sight around our house...even though this was at a park in New Braunfels last Saturday. Carissa enjoys life and most often is very quick to flash a big toothy smile. Last week she took on climbing up the stairs in our house with a determination that said she had been training for that moment her entire life. What a huge victory laugh and celebration she had at the top!

We did find out last week that Carissa has a big challenge with an immuno deficiency. She does not seem to produce antibodies that are necessary to keep her from re-catching any of the illnesses she has already been through or potentially help keep her from getting very sick from an illness progressing further than it normally would. We will be doing additional tests in the upcoming weeks. Please understand if we go even more conservative with getting her out in crowds.

What a great time of the year to make sure we focus on how incredibly richly blessed we are. I hope and pray each of you take time to recognize how blessed you are. We are certainly all very thankful for each of your prayers that you have lifted up for Carissa.

• Please thank God for our miraculous little 19 month old Carissa and give Him the glory for her amazing progress.
• Please pray that reasonable solutions will be found to improve her immunity.
• Please pray Carissa will continue to grow and develop and that her body will fend off the anemia.

Thank y'all so much for your prayers and have a Great Thanksgiving!

Terry

9/8 followup

Carissa was allowed to go home from the doctor's office late this afternoon without going to Texas Children's Hospital. After running a fever all day she actually was fever free this evening and was eating pretty well. She was able to go to sleep around 9:30 and will hopefully sleep well tonight.

Strangely, even with Carissa's hemoglobin count being so low and a preliminary discussion that sounded like we were headed to TCH for a transfusion, we were told to make an appointment with hematology around 9/21. We are faced with some big challenges that need to be overcome or Carissa will be asked to undergo more invasive testing. If her weight does not show improvement the gastroenterologists are planning on scoping her lower GI tract. If her anemia is not better by the 9/21 date they have told us that they will need to test her bone marrow. Both of these would require anesthesia.

Thanks for your continued prayers. We are so thankful for those as well as the full provision of The Great Physician. Today was very trying (and tiring since it all started around 1 am), but it also was another example of God's hand on Carissa's life.

Please thank God for the 17 months (Pamela checked into St. Luke's on 4/9/09 and Carissa was born 4/17/09) of overcoming challenges that are huge to us but nothing to Him.
Please pray for Carissa's continued strengthening and that she would be able to properly absorb the calories and nutrients she needs to be able to grow and develop.
Please pray that Carissa will be able to produce and maintain the needed blood components and that her anemia will dissipate.
Please pray for timely improvement on her weight and anemia so that she will be able to avoid the invasive procedures lurking on the horizon.
Attached are a couple of pictures from the weekend trip. Second one is actually with a self-timer where Colt dove at precisely the correct moment to give the thumbs up before crashing into the stone table and ground. Reminded me of something Kris Chapman told me years ago while skiing and hitting jumps. Don't worry about the landing...everybody remembers how far and how high you flew...not how you landed. BTW, I still remember how Kris landed...but those were some AMAZING jumps.

Yours and His,
Terry

11/7/10 Update

I guess I know I am not sending enough updates when I feel the need to apologize at the beginning. The only way I know to make up for it is to include a picture or 4. Luke turned 3 on 10/16 and got a battery powered John Deere Gator for his birthday. Since it was not charged then, He and Carissa took turns "driving" it. Since then Luke has made dozens of trips around the yard and back and forth from the barn to the yard hauling stuff around and just generally speeding around.
You can see from the pictures that Carissa has made huge strides physically. She has been in occupational therapy for a few months (I didn't even know she had a job) and started physical therapy a couple of months ago. After the physical therapist said that if we worked really hard we might see Carissa crawl by Christmas, Carissa surprised us all by starting to crawl some around a month ago. She is also pulling up and standing up while holding on like you see in the pictures above. The "Texas Tough" shirt Carissa is wearing is actually the first non-hospital issue item she ever wore. What a reminder of how far she has come.

We have been blessed in that Carissa has continually come up negative for any genetic defects. This past week she showed growth in both weight and height over the past month or so and her doctors were encouraged by that. Unfortunately her anemia was pretty severe so she had a transfusion on Friday for the first time since 6/25/09. We are very thankful that Dave Walton, Trendmaker's Director of Purchasing, made time to donate some of his blood last week during a crazy busy week for us at Trendmaker. Therefore, Carissa was able to use his blood that was also used in her last couple of transfusions. That was a very comforting detail during a challenging time.

Carissa's doctors decided on the transfusion because they want her strength up for proposed upper and lower GI tests on this Tuesday. Although we really didn't want to do these tests since they will require Carissa to be under anesthesia, the severity of the anemia shows that she may have something going on that needs to be found and to be dealt with to help keep her from having setbacks. Thanks in advance for your prayers for Carissa's safety and healing. Carissa has been fighting a cold for several days now. She needs to clear up on that to avoid going through all the nasty prep for the endoscopy and colonoscopy only to be told to not have the tests on Tuesday. We definitely do not want to have to repeat that prep. I will update this week after we have heard back from the doctors.

• Please thank God for everything He has brought our little "Texas Tough" Carissa through
• Please pray Carissa will be well enough to undergo the tests
• Please pray that the prep goes as well as it can and that we can keep her very sensitive bottom from getting torn up during the forced diarrhea
• Please pray for the anesthesiologist and that Carissa gets through the procedures and recovery with no challenges
• Please pray for wisdom on our part and the doctors on knowing what to do with the results of the tests.
• Please pray that Carissa can produce and maintain all the correct blood components and that the anemia improves and disappears.

Yours and His,

Terry

9/8 Update

Just a fairly quick note. I apologize for not updating more frequently on some amazing things that Carissa has once again tested negative for that could have meant some very severe potential problems. We never ceased to be amazed at God's faithfulness!

We do have a pretty urgent prayer request I wanted to get out to y'all. Carissa has been fighting a fever for around 11 days now. She generally has been acting like she felt pretty well. We took her to the doctor last Thursday since she had had the fever a few days and were told that she seemed fine and that it was probably just a virus. Her anemia has been pretty severe all summer but has not really gotten worse, but her hemaglobin was down some last Thursday. She actually did go up some on weight to an all time high for her so we were very thankful for that. Carissa appeared to get over the fever Friday so we went out of town but wound up coming back early because her fever flared up again on Saturday afternoon.

She has continued to run the low grade fever but had done very well since we got home. Pamela and I were remarking last night that she was making a lot of progress, eating well, and really starting to play more with better motor skills and showing a little more strength, even with the anemia. Then, around midnight Carissa started vomiting and was up most of the night with that.

Pamela is still at the doctor with her right now. Her fever is up to 102 and her anemia is worse that it has been since she was in the hospital after birth. She also has lost about a pound, which is a significant weight loss for her. We are waiting to hear right now if we are going to have to go to Texas Children's Hospital for a transfusion today.

Please lift Carissa up in your prayers.
Pray that the source of the fever and any potential infection is found and for wisdom for the doctors to know how to treat.
Pray that Carissa's body will produce and maintain the correct blood components.
Pray that we will have wisdom on asking questions and making decisions on how she is treated immediately and long term.
Pray that Carissa will be able to regain the lost weight and that she will be able to properly absorb the nutrients she needs and that she seems to struggle with because she has become a pretty good eater.
Thank y'all for your continued prayers. We are so thankful for how amazingly God has brought Carissa to this point and know that He has an amazing plan for her.

Yours and His,
Terry

5/20 Update

Wanted to thank everyone for their prayers and also let y'all know that Carissa's blood numbers are ticking up slowly. She also gained a tiny bit of weight. They do want to keep checking her blood so please keep praying about that. They also will be doing a screen on June 1st for cystic fibrosis and doing an ultrasound on her abdomen because her spleen is more prevalent again than it should be.

As has often been the case, Carissa's blood tests show some contradictory data that has the doctors a little baffled. Please pray for us, especially Pamela, on deciding on the best food and supplements for Carissa, and that she would have a good appetite for the good food.

Please keep praying. We are so thankful for your prayers and for our Heavenly Father's hand on Carissa once again.

Yours and His,
Terry

5/17 Update

I have been contemplating sending a quick update with a couple of details for prayer requests and finally gave in since many of you in the past have been very quick to let us know that you want to know what to pray about with Carissa.

Carissa has hit a couple of challenges recently. Her blood counts are very anemic again so she is being treated with iron supplements and some special diet items. We go back to the hematologist on Thursday for a followup and to get some test results back. If her blood work is not headed in the right direction there is a possiblity of some pretty serious testing in the near future to find a cause. They do not feel this anemia is connected with the anemia she had in the first few months of her life.

Carissa also has really slowed on gaining weight and has slowed developmentally just because she seems weaker than she has been in the recent past. The iron supplement seems to be suppressing her appetite so we are in a little bit of a circle of frustration right now.

Carissa continues to be a very good-natured baby. She is quick to flash that toothless smile. She has also started sleeping through the night much more often than her once a quarter pace she was on for the first year and we are very thankful for that.

Thanks in advance for you prayers. We are scheduled to go on vacation the end of the week as long as everything stays on track. I will try to update everyone as to the results we find out Thursday before we leave for vacation.

Please know that we really are incredibly thankful for y'alls prayers as well as just the opportunity to experience these challenges with Carissa's health.

Yours and His,
Terry

THE BIRTHDAY UPDATE!

Our little Carissa turned one year old today! You can probably imagine how thankful we are to have been able to celebrate today. I love writing an update that was never supposed to happen...almost as much as Carissa loved the first cupcake she had ever consumed...make that absorbed instead of consumed.



Many of you remember that a few days before Carissa was born we found out that she was having serious issues while still in the womb. We were blessed enough to be admitted to St. Luke's in the Houston Medical Center and then Carissa spent the first few weeks of her life in Texas Children's Hospital. It has been humbling to watch for the past year as the Great Physician has overcome every challenge and every seemingly impossible situation. Just a real quick timeline reveals His amazing ability.

• 4/8/09 Pamela goes from mid-wife to Ob-Gyn to specialist to being checked into St. Luke's and having 2 liters of excess amniotic fluid removed in a late night procedure. We learned this day that our unborn baby has "hydrops fetalis" and online research offers us scary facts.


• 4/9/09 Neonatal experts tell us there are no potentially positive outcomes for our daughter. After several "she will never make to here" points are explained they point blank say that is she were to ever go home she would have severe special needs for as long as she lives, which would not be long.


• 4/8-4/17/09 Minimum of 3 ultrasounds a day and 2 intra-uterine procedures performed to remove fluid from unborn daughter's chest cavity and to give her a blood transfusion.


• 4/17/09 We are going to have a C-section...no we aren't...yes we are...no we aren't...LOOK! WE HAVE BABY AND HER NAME IS CARISSA FAITH SHUFFLER!


• 4/18/09 Tube is inserted into lung to drain fluid after Carissa has already survived many things that doctors said she wouldn't. My update at 30 hours post birth sounds surprised that she is still with us.


• 4/23/09 ventilator removed and Carissa is put on cpap beginning the Shuffalufagus period.


• 4/24/09 We got to hold Carissa for the first time!


• 4/28/09 Cpap removed and nasal cannula inserted.


• 5/1/09 Moved to a crib from a warmer.


• 5/3/09 Moved to an incubator from the crib on a faith-challenging day.


• 5/7/09 Moved to Level 2 NICU when Carissa was never supposed to leave the C-section operating room, let alone Level 3 NICU


• 5/31/09 Feeding tube removed.


• 6/3/09 CARISSA GOES HOME!


• 6/25/09 Last blood transfusion. Looking back this looks normal with everything Carissa had gone through but this was like a punch in the gut since she had avoided a transfusion a few days before this.


• 7/31 Received OK to remove oxygen support.

If you look back through the updates you will see an incredible correlation between specific prayer requests and progression via answered prayers. I hope each of you, like us, have been reminded or maybe even first convinced to take all your needs to God in prayer.

Since Carissa was OK'd to breathe without oxygen support there have been challenges with illness, challenges in drawing blood from tiny crooked veins, wondering if she will ever be able to nurse on her own, and many, many others...and our Almighty God has gotten us through every one of them. Carissa is closer developmentally to an 8 month old than a 1 year old but she continues to make steady progress. She is a really happy baby and would be very easy to deal with if she slept a little better...ok a lot better. She is a shocking contrast to Colt and Luke as babies with her graceful hand movements and usually measured responses.

We still have occasional doctor visits and have gone through many time consuming and some painful tests, but have neither found a real source of Carissa's early challenges, nor have the tests revealed why Carissa improved when the original facts pointed to another outcome. We are thankful that we know the Source of her healing and hope that you do as well.

Once again, we want to thank each of you for your incredible support through prayer. We hope to get a chance at some point to thank you in person if we have not been able to yet. Like I have ended most of these updates I still ask for your prayers for Carissa.

• Please thank God for His incredible healing of Carissa and His faithfulness to get us through every step.


• Please pray Carissa will continue to develop and that she will become less susceptible to illnesses, especially respiratory ones.


• Please pray that God will get the glory for Carissa's miraculous healing.

A verse that has shown up more than once in these updates seems very appropriate again: And my God shall supply all your needs, according to His riches in glory in Christ Jesus. Philippians 4: 19.

Yours and His,

Terry

One very determined look below. I think a love of cupcakes must be instinctual.

1/28 Update

Carissa had a great time at Christmas and is continuing to grow and develop. There is a chance that a virus was at the root of Carissa's challenges because they did find antibodies for it but we really don't know if that caused anything or everything or nothing. Endocrinology did find an unspellable benign condition related to the elevated thyroid levels but it requires no treatment or intervention so they have released her.

Genetics are still searching for some potential lysosomal storage issues. We had to cancel an appointment yesterday for an eye exam to look for some things. The 17 x-rays that were taken in December didn't show any bone issues pointing to lysosomal storage problems but they did bring out that Carissa has osteoparosis. We are thankful to find that now since it can be treated with diet and supplements. Those of you who know Pamela well know that she is all over that... with something at least organic and likely raw or fermented.

Yesterday evening we had our first off schedule hospital visit when we took Carissa in when her breathing difficulty and coughing wouldn't ease along with an escalating fever. She has pneumonia and is now being treated for that. Healing is already evident as she has been able to have a couple periods of rest since we got home around 4:30 this morning and between the breathing treatments. It was a challenging night since Luke is in the middle of a severe cold and Colton has a minor cold/earache. They had to sit in the Expedition for 9 hours through the ER ordeal. We are very thankful for Pastor Mike showing up to sit with them a while so I could help Pamela during some of the tests that were run. Carissa knows things are coming when they start with that blood pressure cuff. Even as sick as she was she never really cries except when things are actually being done to her. She's a tough cookie.

Carissa is always quick to flash a smile, especially to Daddy, and the absence of that yesterday helped our decision to go on to the ER. Part of the evidence of healing this morning was she would stop fussing and flash that grin I could see through the mask as she was doing her breathing treatment. Colton has his infectious laugh, Luke has his "Oh goodness, what has he just gotten into" mischievous grin, and Carissa has her "I couldn't be happier to see you" wrinkle-nosed smile. We are truly blessed because who doesn't like to smile and laugh with children and teens.

Even in the ER last night it was so evident how far God has brought Carissa. We used to watch her pulse-ox readings while she was on the ventilator, then the CPAP, then the nasal cannula, then anxiously through the test to see if she could get off oxygen, always hoping and praying that she could stay around 90 and not drop below 85. Last night, in the midst of wheezing, coughing, and laboring to breathe, our little miracle was generally in the mid to high 90's, never even going as low as 90. What an incredible reminder of how amazing our God really is.

• Please thank God for His continued healing of Carissa that is so evident in her life.
• Please pray for Carissa's continued healing from the pneumonia and that the treatments and antibiotics will do their job
• Please also pray for Luke and Colton. It is rough when you don't feel well and you probably aren't getting quite the attention your parents want to give you that is so important in the healing process.
• Please pray for our wisdom in protecting Carissa during this challenging season of sickness going around

Thank y'all so much for your continued prayers...and please keep'em coming.

Yours and His,

Terry