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

6/29 Update

This is actually a picture from a couple of weeks ago during bath prep time but I thought it was cute enough to send out. The last week has been another one on the Carissa coaster with mostly high points but one or two of those plummeting falls that take your breath away. After getting over the cold of the previous weekend Carissa had been doing pretty well. Oxygen saturation levels were so steady and high I was pretty convinced her hemoglobin and rbc count would be in good shape after the decline had slowed the previous week.

Thursday started early as we had to wake Carissa up at 3:15 to feed her in order to allow a 4 hour gap between eating and her ultrasound that was to take a look at her liver and spleen. The actual ultrasound went better than we thought it would with the complaints from the Carissa complaint department staying fairly mild. We then went on the waiting in the hematology department where they ultimately drew more blood than usual to run a few more tests. It took a couple of sticks to get a needle in to take the blood. The main downhill on the Carissa coaster came a few minutes later when the hemoglobin and rbc count came back significantly lower than the previous week and signaled a transfusion need. Most of Carissa's other blood count numbers were in pretty good shape with platelets rising, the neutrophils rising, and the retic count soaring. We had hoped some of those retic that were up but not as dramatically the previous week would mature to regular rbc's but that had not happened.

There was also much talk of future testing for Carissa with the hematologist. The main one that we want to avoid if possible is the bone marrow test where Carissa would have to be sedated in order to perform it. With her history there is a likelihood that she would have to be intubated before being sedated to make sure her breathing would be ok and there is always a concern that getting her off intubation or bringing her out of sedation will be difficult. I am sure you can understand why we don't want to go there if it can be avoided.

We found out about the need for the transfusion by 10:30 am or so. A little while later we had to watch Carissa endure 3 more nurses and then lab techs try 5 different sticks in order to insert the IV. I think they understood a little more why we didn't want to put her through that the week before if it was not absolutely necessary. The Carissa Complaint Department was loud and clear for about the 45 minutes they looked and poked and stuck her and she looked exhausted and very pale when that ordeal ended. We finally got our room for the transfusion about 4:45 but the blood was not ready to start the transfusion until a few minutes later. The transfusion itself takes 3 hours so after 2 1/2 hours we are thinking we are on the home stretch when we found out that after the transfusion they were going to take another few minutes to flush the line and then observe her so we were not able to leave until after 9:00. That was one long trying day.

Carissa seemed to recover from the long day pretty quickly. I think it took Pamela and I a little longer than her. Because of the transfusion we get to have a week without a scheduled appointment so we are looking forward to that. Even after the trying day we are so thankful to be having these issues to deal with as opposed to Carissa still being in the hospital or sticking to the dreadful original prognosis. We even went a week without any other member of the family needing a hospital visit so we've got that going for us also. As you look around the Hematology/Oncology Department you realize that we don't have things nearly as challenging as many of the families there and you just want to see God move in their lives like we have felt Him move in ours. No wonder the psalmist said in Psalm 91 "I will say to the LORD, "My refuge and my fortress, My God, in whom I trust!"

• Please thank God for Carissa's progress. She has been home 4 weeks this Wednesday and a month this Friday!
• Please pray that Carissa will continue to produce the blood components that she needs, that the reticulocytes will mature into mature red blood cells, that her neutrophil and platelet counts will continue to improve, and that she will be able to maintain her rbc and hemoglobin count after this last transfusion.
• Please pray for Carissa's lungs and breathing to continue to develop and that she will be able to remove oxygen support after her 7/28 OCRG test and Pulmonologist appointment.
• Please pray that our Heavenly Father keeps getting the glory and praise for Carissa's improvement and that He is glorified even through the rough days like last Thursday.

Thanks so much for all your prayers. There is not usually a lot of changes on a daily basis so I don't update as often but Carissa still desperately needs your prayers regularly as well as a regular touch from the Great Physician.

Yours and His,

Terry

6/22 update

We have hit some milestones since the last update. Carissa turned 2 months old on 6/17 and 9 weeks old this past Friday. We had another followup to the hematologist on Friday. The visit started with Pamela and I almost getting reported to CPS...only partially kidding...as I noticed the lab technicians getting ready to attempt to insert an IV into Carissa. If you know her history of having difficulties getting IV's you would understand our concern, especially since we had not even done the blood work to do the CBC yet. As I nicely stated that our doctor had wanted to do the CBC before deciding upon a transfusion the tech looked at no one in particular and said that she knew that they should have talked with us first. They called over a hematology nurse who showed us the chart on Carissa's last 4 CBC's and how it was a pretty linear graph indicating that she would be below the threshold and needing a transfusion. I told her I understood the graph but still prefered to see if she really needed to get the IV and they started treating us like people out to second guess them and doubt their ability to insert an IV. They sent us to a different tech who told us we were foolish, that they were the best at inserting an IV, and that we just caused ourselves to have to get back in line when the blood test comes back showing Carissa needing a transfusion.

Somehow God enabled me to keep my mouth shut while in the presence of those openly questioning our judgement and parental ability...and He enabled it to keep it shut and not rush the lab with the news that Carissa's blood count had fallen in some areas but remained just above the threshold for the transfusion. Halelujah! The Retic count was also up 400% from the last test, displaying that her bone marrow is kicking into gear and trying to replace her rbc's and get her hemoglobin count up. Reticulocytes are new, immature red blood cells just produced by the marrow. The white cell count, specifically the neutrophils that have been a challenge, were also in a good area.

Quick update on Colton just to let y'all know that he has healed amazingly. The few people that saw him within the first few days of his accident will tell you that the picture sent in the update that showed his neck did not really show how badly he was banged/scratched up. It is absolutely amazing to now have to really look closely to see any evidence at all of the accident ever happening. Praise God for healing Colt and thank y'all for your prayers for him.

Last Friday's visit with the hematologist was not all rainbows and butterflies as he reminded us of the fact of Carissa's spleen and liver still not returning to normal size and of other issues that could require large blood samples for testing as well as painful procedures for other testing. We are supposed to have an appointment this week for an ultrasound to get an accurate size of both the spleen and liver for future reference to see how they are changing. We go back on Friday again for another cbc.

The last three days have been a challenge with Carissa's first sickness with her appearing to have some sort of cold-like illness. That has caused all sorts of challenges with the basics of eating and sleeping and we are so grateful that Carissa seems to be much improved this evening. She has just not felt well over the past 60 hours or so and was having to be held and comforted the vast majority of that time just to fend off continual crying. She has been asleep now for 30 minutes, which is the longest straight sleep period of the last 3 days.

• Please thank God for Carissa's progress and for her rbc and hemoglobin staying above the transfusion threshold.
• Please pray that the positive trends in Carissa's blood component production and management to continue.
• Please pray that Carissa will continue to grow and strengthen, that her lungs and breathing will continue to mature, and that she will fully heal from the congestion/cold she has been experiencing.
• Please pray that Carissa's amazing progress will continue and that she will be able to avoid the challenges of invasive testing and large blood tests.
• Please pray that the one, true God will continue to receive glory for Carissa's healing and for us to be able to graciously and humbly give the glory to Him when we visit the lab this week and see the technicians that didn't agree with us.

Know that as I share some of the challenges we are dealing with that we are so incredibly thankful to be able to take on those challenges, knowing the grace of God will always be sufficient for us. All it takes is thinking back to just a few weeks ago and how we were longing to have Carissa home, and we are happy to be taking on these challenges. The end of the book of Jude reminds us how fortunate we are to serve a God who can present us as faultness because of the gift of eternal life through Christ, "Now to Him who is able to keep you from stumbling, and to make you stand in the presence of His glory blameless with great joy, to the only God our Savior, through Jesus Christ our Lord, be glory, majesty, dominion and authority, before all time and now and forever. Amen."

Thank y'all so much for your continued prayers. I don't doubt that Carissa's quick recovery from the cold-like illness is directly to many of y'all to praying for her protection and healing. It makes no sense for one having been through what she has been through to be able to get past this that with as little as a struggle as she has. Please keep lifting Carissa up even though you are not getting daily reminders/updates from me to do so.

Yours and His,

Terry