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

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

10/20 update

You always hear you should treat your children the same. I am not convinced we really live by this principle. If Luke drops his pacifier we pick it up, dust off most of the larger things hanging off of it if we have time, and then hand it back to him. If Carissa drops her pacifier we pick it up, go wash our hands, wash the pacifier, disinfect the pacifier, throw away the pacifier, open up a new pacifier from a sterile package, disinfect the new pacifier, and then reluctantly hand it back to Carissa wondering if we have been careful enough. You don't even want to know the comparison to poor Colton (although we did proudly watch him haul in a 30+ yard touchdown catch tonight at his game!).


Luke has the chore of feeding the 1300 pound longhorn bull living in our back pasture. After all, he turned 2 last Friday so it's about time he started pulling his weight around here. You can't tell it from this angle but the bulls horns are more than 50" wide.

Carissa has everything done for her and gets dressed like this while we are preparing meals to protect her further.

If you ask my brother he will reluctantly admit to you that he was treated much better than I was growing up (I'm pretty sure that's the way he tells it) so either we are not the only family guilty of this or it is an inherited trait that I am passing down. By the way, Pamela generally does a great job of dressing the kids for UT gamedays as you see from the pictures. She does this voluntarily...of course on Friday nights I remove all clothing not burnt orange or having a longhorn from our home until Sunday morning.

Carissa goes in for another ultrasound Thursday to make sure everything seems ok with her spleen and liver since they still seem enlarged. She will also have additional blood work done at that time because there seems to be growing concern about her thyroid function. We have made it through a couple of cold/upper respiratory scary times with Carissa over the last couple of weeks. Those are never fun with any young child and seem even more trying with Carissa's background of slow lung development. We had a couple of people come out a few days ago to measure Carissa's developmental progress and she seems to track pretty well if you chart her versus her due date, but she is behind in most or all areas if you measure versus her actual birthday. That is to be expected at this point. We are thrilled that she seems mostly on track when compared to her full term date and see that as miraculous considering all she went through those first few weeks. She is scheduled to be reevaluated monthly for the next few months to help us make sure that she keeps developing like she should.

• Please thank God for His amazing healing touch on Carissa's life. She turned 6 months old last Saturday! We know we are amazingly blessed to even be saying that.
• Please pray that Carissa's thyroid will function properly as well as her other glands that could be a challenge right now and are so important for her continued development.
• Please pray that Carissa's liver and spleen are also functioning properly and that there is no issue with them being enlarged.
• Please pray that Carissa continues to make and maintain normal levels on her blood components. Praise God she has been considered to be normal in this area the last two visits.
• Please pray that God continue to be given the glory for Carissa's amazing progress and please make sure to give Him credit when you share her story.

We are humbled to have the opportunity several times a week to give an account of God's amazing actions in Carissa's life and of our thankfulness of hundreds of people offering up prayers for her. Please keep remembering her in your prayers.

Yours and His,

Terry

9/25 update

Wanted to touch base with y'all to let you know of a little news but mostly to request your prayers for our family's health. Luke had a little bit of a cold a couple of days but seems to have mostly gotten over that. Unfortunately Pamela has caught it big-time and Carissa is getting it a little and that is what concerns us.

We did hear back that Carissa needs to have her thyroid evaluated because some of the tests the genetics group ran says it is low so we are waiting to hear from the endocrinologist to set up an appointment. We did find out this week that when you plot her growth on the timeline of her due date instead of her actually birth date that she is on the 25th percentile curve and very proportional. It certainly makes sense to us to look at her growth that way. Maybe we should ask her a couple of questions to let y'all see her responsiveness. For comparison look at the picture of the 2 day old Carissa on the front page of the blog at http://www.theshufflersstory.blogspot.com/. It is amazing to think of that 2 day old on the ventilator with lungs that won't fill and without the ability to maintain most of her blood components has been healed and has grown to the baby she is now. She has grown 7 inches and over 250% weight-wise when you count the weight she was after she lost most of the fluid from the hydrops. Anyway...back to the interview.

Carissa, can you show them what a 5 month old baby who seems to be starting to teethe some would look like?

That's good. That's an impressive drool trail to sell your point.

Now show them a trick. Can you roll your tongue up in a ball for them?

Show them that wrinkled-nose smile that melts Daddy's heart when he gets home from work.

You wouldn't use that to get your way in the future would you?

You're right and I didn't think so...and I am sorry if that insulted your integrity.

• Please thank God for the miraculous healing He has provided for Carissa.
• Please pray that Carissa will be able to avoid or get through this illness with little effect.
• Please pray that Pamela will be able to get the rest she needs and get over the cold.
• Please pray that Carissa's thyroid will function properly and lead to normal physical and mental development.
• Please pray that our God, the Great Physician, keeps getting the glory for Carissa's healing.

Thank y'all for your continued prayers. We are so appreciative of your faithfulness to pray for Carissa and for celebrating her amazing progress with us.

Yours and His,

Terry

9/8 update

Let's get right to the point. Carissa had 2 appointments today, one with the pulmonologist and one with the hematologist. You may remember way back early on in these updates that it is a really good thing from the patient's perspective when they bore a doctor and I think Carissa is starting to bore some doctors. For the first time ever Carissa's blood count numbers are all in the normal range! I know many of y'all have been praying for this day alongside us for months and I hope you all feel at least a fraction of the joy that we do.

Dr. Mahoney, Carissa's hematologist who has been incredible as her primary physician after she was discharged from the hospital, is even saying that he cannot really be her primary physician now because she appears to not have any blood issues. There are some tests that Dr. Mahoney and the geneticist sent off today that will take a while to come back, but those seem to mostly be "let's make sure she doesn't have this" instead of really searching for something. We have a consultation on 9/22 to find out if the muscle tone really is something to be concerned about and worked on or not. I already have Carissa doing P90X and some water aerobics so I think she'll be good by then.

News like this sure helps put piddling problems into perspective. It also helps us be so thankful for normal...just plain ole normal. It brings into perspective what an incredible promise God made when He said through Paul in 2 Timothy that through His Word we would be adequate, equipped for every good work. How amazing is it that God's Word can make us adequate to perform most...make that every...good work. I never knew normal and adequate could be such incredible adjectives to strive for.

• Please thank God for His incredible healing of Carissa that draws closer to completion every day.
• Please continue to pray for Carissa's development and for her protection from the fall and winter illnesses that could still prove very challenging for her.
• Please thank God that He hears our prayers (just re-read some of the prayer requests portions of old updates to see how directly He answers specific prayers)
• Please pray that Carissa's story will be used to encourage believers, to help people come to a saving knowledge of Jesus Christ, and to most of all bring glory to God, and please help make that happen by giving Him credit when you have opportunities to tell Carissa's story.

Thank y'all so much for your prayers as well as for letting us know you're praying and spreading Carissa's story. I don't know how we will ever be able to express our appreciation enough.

Yours and His,

Terry

PS I'll try to send soon a couple of photos of the almost normal Carissa. I'm not sure if she is absolutely declared normal that many of you will believe that she is really my daughter but I'll deliver the message regardless.

9/1 update

Who couldn't use a helper like this? Luke is very aware of the importance of a good pacifier and is great at giving Carissa hers...when he isn't stealing it for himself.

This is Carissa Monday night having a little floor time after an evening nap. I would be happy too if I had just had an evening nap.

We had a doctor's appointment Monday with the Genetics department. Nothing of huge consequence was found out but we did learn that Carissa is behind in muscle tone development and is basically below all the trend lines (even the 5% one) on size. The doctor said that she likely is also behind in other areas including her immune system and that we should proceed with a lot of caution for a while about taking her into public and exposing her to other people, especially other children. That was a little...ok, a lot...disappointing since we had taken her to church for the first time Sunday and had planned on taking her to Patillo this weekend for the family reunion and Uncle Junior and Aunt Fran's 50th Anniversary Celebration. Sometimes God gives us these reminders that we are on His schedule and not the reverse. We were just talking Sunday during Bible study about Isaiah 55: 8 that says:"For My thoughts are not your thoughts, Nor are your ways My ways," declares the LORD.We talked about how that is pretty cool to quote but not quite as cool when God has to remind us that even though we are created in His image that we are not Him and don't always know best and darn sure don't always do best. How cool is it that when we come face to face with the fact that our righteousness is as filthy rags and all our accomplishments are but dung (Paul's words, not mine) that we can rest on the redemptive sacrifice of Jesus that brings us back into a relationship with the Almighty God if we just accept it? Real cool!
We have another hematologist appointment on Thursday and then a follow up visit with the pulmonologist on Tuesday. We are praying for a great visit at the hematologist on Thursday even though they will be taking more blood than usual because they will be sending it off for tests at Stanford Medical (hopefully more reliable than Stanford Financial!), and then an uneventful pulmonologist appointment next Tuesday, and then perhaps a break for a couple of weeks from doctor visits. Please join us in that prayer.

• Please thank God for His amazing healing of Carissa, for the amazing progress He has brought her through, and for the reminder this week that our hope is in Him, not just time or doctor's abilities.



• Please pray that Carissa will continue to grow and mature and that her muscle tone, immune system, and other development will continue to progress and to even start catching up with her age.



• Please pray that Carissa will continue to produce and manage all the different blood componenets and that that will be revealed in the cbc on Thursday.



• Please pray that God will continue to get the glory as Carissa's miraculous story is told, and please take advantage of opportunities to do that. We hope every time her story is told that God's grace and mercy and healing power are presented as the framework of her odds-defying progress.

Thank you for praying and please take the challenge of this update as a reminder to pray daily for Carissa,

Terry

8/15 update

Just a quick note to let y'all know that Carissa's cbc yesterday showed some great things. Her hemaglobin had actually risen slightly from her test 3 weeks ago and her platelets continued to rise and are actually in a normal range for the first time ever. Her other blood components were in pretty good shape also. We go back in 2 1/2 weeks for another cbc as well as having more blood drawn to try to test and see what the root cause of her blood issues has been. There have been times in the past when improvements were found to be short term so please keep praying for Carissa that she will continue to improve.

• Please thank God for the amazing healing Carissa has undergone since her birth. She will be 4 months old Monday!
• Please continue to pray that Carissa will be able to continue to produce and maintain all the different blood components.
• Please pray that Carissa will continue to be protected from illness as she matures and we start taking her into public some.
• Please pray that our Almighty God continue to get the glory for Carissa's healing.

Thank y'all for your prayers and please keep praying!

Yours and His,

Terry

7/31 BIG update

Quick interview with Carissa:

Well, good afternoon, Carissa. Looks like you may have just had a bath since you don't have your nasal cannula in.

I actually have some pretty good news I would like to tell you. Are you ready to hear it?

I got a call this afternoon from your doctor's office and you do not have to wear the nasal cannula because you no longer need supplemental oxygen. You also do not have to listen to that annoying pulse-ox monitor and its loud beeping. How does that all make you feel?

Me too!

Praise God for the great news today! Thank you for each of your prayers and please keep praying. We have another visit to the hematologist two weeks from today. We have never gone 3 weeks between visits before.

The news about the oxygen was a huge high for us and is especially timely because we are actually packing to move and moving over the next few days. God's timing is perfect, as usual. Our new address is:
19403 Sapphire Circle
Magnolia, TX 77355

• Please thank God for His healing of Carissa. Take a look back at some of the updates if you want to be reminded of how amazing and how powerful God is.


• Please pray that Carissa will continue to improve on her breathing and lung development even beyond where she is today and that she will be protected from illness.


• Please pray that Carissa will continue improving on holding on to her blood components and that she will also keep manufacturing all the different components.


• Please pray that the Great Physician keeps getting the glory for Carissa's progress and please help make that happen.

Thanks again for all your prayers and please keep lifting Carissa up to our Heavenly Abba Father.

Psalm 103 says it best. Please read it all and join us in acknowledging the Lord for who He is:

1Bless the LORD, O my soul, And all that is within me, bless His holy name. 2Bless the LORD, O my soul, And forget none of His benefits; 3Who pardons all your iniquities, Who heals all your diseases; 4Who redeems your life from the pit, Who crowns you with lovingkindness and compassion; 5Who satisfies your years with good things, So that your youth is renewed like the eagle. 6The LORD performs righteous deeds And judgments for all who are oppressed. 7He made known His ways to Moses, His acts to the sons of Israel. 8The LORD is compassionate and gracious, Slow to anger and abounding in lovingkindness. 9He will not always strive with us, Nor will He keep His anger forever. 10He has not dealt with us according to our sins, Nor rewarded us according to our iniquities. 11For as high as the heavens are above the earth, So great is His lovingkindness toward those who fear Him. 12As far as the east is from the west, So far has He removed our transgressions from us. 13Just as a father has compassion on his children, So the LORD has compassion on those who fear Him. 14For He Himself knows our frame; He is mindful that we are but dust. 15As for man, his days are like grass; As a flower of the field, so he flourishes. 16When the wind has passed over it, it is no more, And its place acknowledges it no longer. 17But the lovingkindness of the LORD is from everlasting to everlasting on those who fear Him, And His righteousness to children's children, 18To those who keep His covenant And remember His precepts to do them. 19The LORD has established His throne in the heavens, And His sovereignty rules over all. 20Bless the LORD, you His angels, Mighty in strength, who perform His word, Obeying the voice of His word! 21Bless the LORD, all you His hosts, You who serve Him, doing His will. 22Bless the LORD, all you works of His, In all places of His dominion; Bless the LORD, O my soul!

Yours and His,

Terry

7/28 almost update

You ever study for a test, think you are ready, and look forward to finding out what you made only to learn that the teacher won't grade the paper for a couple of millenia...I mean days? We are in the middle of the BIG TEST, the FREE MY PEOPLE (daughter)TEST, the Testimus Maximus, the Test to end all Tests, and we just found out that we will be called in a couple of days with the results? I bet Yao Ming's daughter would find out the same day. I bet Lance Armstrong's daughter would find out the same day.

Carissa's pulmonologist just came in and delivered that news. I am pretty sure she then told us that she anticipates that she will do fine and will be able to get off the oxygen. I could not hear for sure because of all the crying. I hope Carissa never finds out that I cried at her appointment.

On the way to the hospital this morning we were thanking God for His perfect timing...I just wished Texas Children's got a copy of His schedule. Just kidding. We know it is in His hands, whatever the results and whatever the time.

I'll pass along the results shortly after we get them. Thanks in advance for your continued prayers.

Yours and His,
Terry

7/24 update

Woohoo and Hallelujah! It has been 4 weeks and 1 day since Carissa's last transfusion and we are going to be able to keep that clock rolling a while longer. Carissa's rbc and hemoglobin was lower than 2 weeks ago but not in a range that needed a transfusion. Her retic count also shows that she is producing rbc's. Her platelet count is still slowly but surely rising as it has been for several weeks now, and is almost to a normal level.

We ran some errands early afternoon after we left the hospital and when we got home I saw as I brought Carissa in that her oxygen supply was showing no pressure on the meter. We have gotten used to spot checking her oxygen on the pulse-ox monitor because the sound is so annoying and it had been off for more than a couple of hours. I turned the monitor back on instead of just turning the oxygen back on and the reading immediately showed a very good pulse rate and a oxygen saturation level of 98. I have actually just left the oxygen off for the last couple of hours and the readings are generally very good, never dipping close to 90, known as the "desat" range. What a great observation to see those ranges even though Carissa has not had any oxygen assisstance in a while.

On Wednesday we also left the oxygen off for a while after we bathed Carissa. We put the cheek pads on her and taped on the nasal cannula but just left it unhooked to the oxygen and she stayed in a good range until I was too tired to watch the monitor and hooked her back up to the oxygen tank.

We are so thankful for these times that display how far Carissa's lungs and breathing have developed and are humbled to see the results of your and our prayers and the actions of the Great Physician. Next Tuesday is the pulmanologist appointment and the OCRG test to see if Carissa will be able to leave the oxygen support behind her. We kind of feel like you do when you have studied really well for a test, are pretty sure you are ready for the test, but still are a little anxious waiting for the test to see if you really studied the right thing.

Here is a picture I took a few minutes ago as Carissa drifted off for a nap showing her oxygen saturation at 98 and her pulse rate at 133...both very good.

Here is a picture showing the familial resemblance of Colton to Carissa and his regression one night this week. All that talk of recent maturity down the drain. Just kidding, really. He actually gave up the pacifier last summer before he started junior high school.


Can't you just see this picture showing up at Colt's 18th birthday party, his rehearsal dinner, his first child's birth announcement, an ad run in the local paper announcing he turns 40 that day...feel free to find uses on your own.

• Please thank God for all of Carissa's progress and His amazing mercy and grace that He has shown her and us.
• Please pray that Carissa's breathing and lung development continue and that she is able to get off her oxygen support after her test next Tuesday.
• Please pray that Carissa's slowing trend of chewing through her rbc's continue, that the reticulocytes continue to form and go on to develop into mature rbc's, that her platelet count continues to rise and that she is able to produce and maintain all her blood components at healthy levels.
• Please pray that our Almighty God continue to receive the glory for Carissa's healing and please help us in acknowledging that.

Thank y'all so much for your continued prayers and please keep them up. Wayne Watson's song "When God's People Pray" has a couple of lines that says when God's people pray and take the pains of earth to the doors of heaven that hope is reborn. Thanks for taking Carissa's pains to the doors of heaven.

Yours and His

Terry

7/18 update

I will just admit it up front...I am a slacker punk. I am way behind on giving an update after last week's visit to the hematologist which was the first blood count done after the rbc transfusion on June 25.


The blood count showed a hemaglobin and rbc count in good ranges, but at a point where they had no doubt dropped from levels soon after the transfusion. The platelet count was up over 100k on their own for the first time. That is still a little low but they have been trending up for several weeks and the low platelet issue, thrombocytepenia, seems to be resolving. The neutrophil count is also still in a good range and looks like that problem is in the past as well. If you have been reading these from the beginning you may remember Dr. Johnson who was Pamela's doctor starting on the night of 4/8 when she checked into St. Lukes. He checked on us this week just to see how we, and specifically Carissa, are doing. I told him I hope I never have to spell thrombocytopenia or neutropenia again-openia...actually I left the suffix humor off for Dr. Johnson.


Carissa has some really big appointments over the next 10 days and we request your continued prayers for her. We go back to the hematologist Friday and then go to the pulmanologist for the OCRG test (Our Carissa Respirates Good is what I think that stands for) on 7/28. We have been counting the days until the 28th for quite a while and are honestly both hopeful and anxious about that day. The timing is a little tricky because if trends hold Carissa may be getting lower on rbc's by Friday's appointment but maybe not low enough for a transfusion. The OCRG test on the following Tuesday is all about her oxygen saturation so that will be a challenge to do well and get off oxygen if her rbc and hemaglobin counts are not high. We really hope that Carissa will be able to do well and be able to be off oxygen support for the first time except for a few hours while she was in the NICU. Conventional wisdom says that this could be lined up for a perfect storm where Carissa's counts aren't low enough for a transfusion, then her OCRG test does not go well due to low rbc's, and then she needs another transfusion shortly after the OCRG test. We thank God that He is not restrained to operating in the realm of conventional wisdom! Carissa has had great physicians but she is ultimately in the hands of the Great Physician!

• Please thank God for Carissa's progress and for her 6 1/2 weeks home when she was once thought to never leave the delivery room, let alone get to leave the hospital!


• Please thank God for Carissa's steady improvement in platelet and neutrophil counts and pray that she will improve on producing and maintaining her red blood cells.


• Please pray that Carissa's lungs and breathing will continue to develop and mature and that she will do well on the OCRG test on the 28th and get to get off oxygen support for the first time ever other than for a few hours in the NICU.


• Please pray that God will continue to get the credit for Carissa's progress.

Please continue to pray regularly for Carissa. She still has several areas that need your intercession and God's intervention.

Yours and His,

Terry

7/6 update

Little Big Bro joined Big Big Bro in holding Carissa tonight. Colton has been doing amazing at helping out with both younger siblings and has allowed Pamela to take a few minutes to get things done by watching Carissa pretty often. Tonight Luke plopped down beside Pamela and made it clear to her that he was there to hold Carissa. He was quite proud of himself after that.

Last week was the first week Carissa had ever had without any sort of doctor or hospital visit. We pray that is the first of many. We got in a new batch of pulse-ox sensors early last week and promptly went through all 4 of them in no time with the last one going bad just after 5 last Thursday as everyone closed down for the holiday weekend. We have either been living on faith or foolishness for the last few days because Carissa has not been on the monitor since that sensor went bad last Thursday. We ordered more today and will likely get them Wednesday. I don't miss that annoying beeping at any little move by Carissa even one bit.

We certainly hope and pray that the last few days are just a foreshadowing of late this month when we hope Carissa will be found to not need oxygen anymore. We would like for the oxygen need to be behind us.

We do have a hematology appointment Friday which will be the first cbc since her transfusion on 6/25. Depending on what is found we will either have a transfusion or get another appointment set for one or two weeks later.

• Please continue to thank God for His amazing touch on Carissa's life and her odds-defying progress.
• Please pray that Carissa is able to keep making and properly managing all her different blood components and that the cbc shows progress.
• Please pray that Carissa's lungs and breathing continues develop to the point that she will not need to stay on oxygen when she is retested at the end of the month.
• Please pray that Carissa keeps getting stronger and is better able to handle all of her eating via nursing.
• Please pray that our Almighty God keeps getting the glory and praise for Carissa's healing and that we all take advantage of opportunities to help that happen.

Thank all of y'all so much for your prayers and please keep praying for Carissa daily.

Carissa's issues and progress have given us many opportunities to talk about the faithfulness of God and of the power of prayer. It reminds me of a verse we have been focusing on at our church during Bible study on Sunday mornings as we discuss some basics of our faith. 1 Peter 3: 15 says "but sanctify Christ as Lord in your hearts, always being ready to make a defense to everyone who asks you to give an account for the hope that is in you, yet with gentleness and reverence." It's a really good idea to know what you believe and why you believe so you can be ready to defend your reasons, and reminding yourself why you believe what you do is a really good exercise in strengthening your faith.

Yours and His,

Terry