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