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