Merry Christmas 2011!

Merry Christmas! I can't believe I have not sent out an update since Thanksgiving of 2010. It is not for lack of interest or encouragement to do so on any of your parts. I thought I would start with showing you a couple of pictures. The first is when Carissa was 2 weeks old and she has on a size 12 month shirt that was the first article of clothing she ever wore. Most of you who know me well enough would be surprised to learn that it was her nurse who picked out this particular shirt and not me. As you see, she almost disappears in the shirt.

The second picture is from tonight when Carissa put on the same shirt only in a size 2T.

For many of you that have followed Carissa's story from the beginning or near the beginning, you understand what a miracle you are witnessing when you see the second picture. In getting ready to write this update I looked back at many of the early updates that were sent out.

I was again awestruck as I was reminded of God's amazing healing power and His complete sovereignty as evidenced through Carissa's progress.

We are so thankful for your prayers for Carissa and our family. It has been humbling and inspiring to see first-hand so many prayers being answered in Carissa's life. God's grace is evident when we look back and consider everything he has brought Carissa through. We are gratefully reminded of His grace in our lives as well when we think how He has walked with us and provided peace for us with the challenges that He has brought us through. We are thankful for Him just getting us through many days that followed nights with little rest.

As much as Carissa has improved she still has a very sensitive stomach and is still susceptible to upper respiratory bugs. She is very tough and is often able to function pretty normally through the day when her stomach is hurting or she has sinus or respiratory issues, but the discomfort is often too hard for her to block when she tries to sleep at night. Complete nights of sleep are much more frequent now but it is still not uncommon for her to be up one or more times a night.

The first part of this year had many trips to Texas Children's for tests for genetic abnormalities, different syndromes, and still searching for an answer for what has caused her challenges. All the tests for syndromes and genetic problems came back negative, many of them for a second time. Carissa got to where when I was present she didn't even cry when blood was drawn...not with a finger prick, but with the complete full blood draw. I told you she was tough.

We thank God for leading us to The Therapy Village of Cypress in August of 2010. At that time, I honestly did not realize how far behind developmentally that Carissa was. She could not sit up on her own and was not anywhere close to being able to crawl. This was when she was 16 months old. We started seeing progress immediately from her multiple physical, occupational, and speech therapy sessions each week. Within a few weeks she was able to crawl. Carissa started standing and taking steps assisted early this year and started walking the week of her second birthday in April. She is now officially impossible to keep up with and gives 4 year old Luke a run for his money. My Mom, Memaw, at our Christmas celebration with the Shufflers said that we needed to play a game called "Guess where Carissa found that " because she is that hard to keep an eye on. Colt just turned 16 and with the hope of driving soon should be able to stay ahead of Carissa for a while. Colt and Luke are both great brothers to Carissa and she is no doubt tougher as a result of interacting with them every day.

Carissa will continue to go to occupational and speech therapy sessions in 2012. As another show of Carissa's amazing progress Ms. Mary, the world's most incredible physical therapist, released Carissa from physical therapy early this month. Ms. Mary said that Carissa can do every thing she needs to do and that she is great at pushing herself to do more and take on new things. You would probably push yourself to if you were trying to keep up with big brother Luke who is always trying to do everything that biggest brother Colt is doing. Carissa is the only toddler I know that has had formal training in correct tackling techniques as well as avoiding a pass rush while still getting the pass off.

I will close with one more picture that will show you that Carissa does all of this while she is tiny. She weighs in at around 24 pounds and I am not sure of her exact height. This is Carissa and Luke at Halloween. She was the hit of trick-or-treating in our neighborhood.

Thanks again so much for your prayers. I hope we are able to express in person how much we appreciate those and we would love for you to be able to meet or see again living proof of God's mercy and power.

• Please thank God for all the amazing steps he has brought Carissa through.



• Please pray that Carissa will continue to grow and progess, that He will continue to get the glory for her progress, and that there will be opportunities to encourage others through her progress. (please direct anyone who needs to hear of God's provision in Carissa's life to http://www.theshufflersstory.blogspot.com/ or give them our email address or contact information)



• We pray for each of you to be reminded of God's love, grace, power, and mercy that is evidenced in life itself. Please pray that each of us recognizes and acknowledges our first-hand evidence of God's presence in our lives

It is an incredible time of the year for us to all be reminded of God's perfect love for us through the incredible gift of Jesus Christ who didn't just stay as that baby in the manger. Paul told us in Romans that "God demonstrated His love for us in that while we were yet sinners Christ died for us."

Yours and His,

Terry

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