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

Christmas Update

As we get close to the end of the year and think about all that has transpired this year I don't know how we could be more blessed. We have had the privilege of watching the Great Physician perform multiple miracles in Carissa. Because of His mercy and faithfulness we have been able to experience many things that we were told multiple times that we would never experience with Carissa. We have been blessed with a now 14 year old, Colton, who has matured leaps and bounds and is an incredible help with both younger siblings. I cannot imagine anyone transitioning better from being an only child for almost 12 years to having not one but two younger siblings in an 18 month period. We've also been blessed with Luke who is the most hustling 2 year old I've ever seen and can repeat complex actions after seeing it done only once. Don't ask him to tell you how because he is not into talking at all.

I've mentioned it before, but you can go back and read our updates forward or reverse and see an amazing pattern of God answering specific requests for Carissa shortly after we had asked y'all to join us in praying about them. We got to see Carissa actually be born alive on April 17th and make it from the operating room to Level 3 NICU. We got to see her get off the breathing tube and onto the CPAP (remember her Snuffalufugus impersonation!). We got to see her move onto a nasal cannula. We go to see her move to Level 2 NICU. We got to take our precious little baby home on June 3rd, 5 days before her original due date. We got to watch her get her last blood transfusion June 25th. We got to remove her nasal cannula for good on July 31st. We got to watch as her cbc's starting showing that she was not only slowing down on destroying her blood cells but that she was actually producing and maintaining her blood cells. We got to see her get strong enough to stay awake for long periods and interact with us. I will never forget the first time she was able to push up on her arms and lift her head off her bed to look at me as I was trying to sing her to sleep.

I am going to get in trouble with some of you for this, but trust me when I say we didn't know if this could happen until the day before it did due to Carissa and Luke being sick. On the Sunday before Thanksgiving we got to stand before our church as we dedicated Luke and Carissa to the Lord. Carissa just sat sweetly in my and then Pamela's arms, and Luke put on a show for all to see. It was almost as good as that Ray Stevens song about the squirrel getting loose in the church. Here is a picture of Carissa in her dress that day.


We got to take our first trip out of town with Carissa at Thanksgiving where she was able to go see both sets of grandparents. We got to take a Christmas picture of our three kids together.



We have certainly had challenges. We are hopefully on the tail-end of a third cold with Carissa and Luke. With Carissa's history of breathing challenges those are not fun at all because they hit her very hard. If we seem pretty recluse please understand that we are just trying to protect Carissa from catching anything. We certainly hope to ease up on that sometime in the spring after the flu and cold season. Carissa still does not sleep for long periods and that makes for some very challenging times for Pamela. Carissa still often has several appointments a month down at Texas Childrens Hospital and those usually entail drawing blood and other tests or x-rays that are hard on both her and Mom.

We are looking very forward to the next few days and getting to celebrate the birth of our Saviour and enjoy some great family times. It has been quite a year for us and we are thankful both for the hundreds of you that have let us know that you are praying for us as well as the hundreds of you that have been praying that we haven't even met or heard from. We hope you have been blessed to see your prayers answered in Carissa's life. If you have not met Carissa in person we certainly hope to have the opportunity to introduce you to our little blessing that has some of the biggest and brightest blue eyes you will ever see.

We still shamelessly ask for your prayers for Carissa. We have more tests to be done to try to see if there are issues or challenges that we can head off or know to deal with.

• Please thank God for His amazing actions in Carissa's life
• Please pray that Carissa will continue to grow, strengthen, and develop in accordance with what is expected in relation to her original due date
• Please pray that recent tests and a couple yet to come will show no signs of alarm and that Carissa's doctors will grow confident enough in her condition to declare her well
• Please pray for the blood draw to come and the eye test to come where Carissa's eyes will be dilated that her pain or discomfort will be minimal
• Please give credit to our Heavenly Father when you have the opportunity to mention Carissa's story

All I know to say here is to thank you once again for your faithful prayers for Carissa. We hope to get the chance to thank each one of you in person for your prayers and we pray that you feel as blessed as we do during this Christmas season.

Merry Christmas!

Terry