Samuel's 25th Update

I want to thank everyone for being patient with me while I got this update done. I realize you were probably anxious to receive information as to how Thursday’s long day of events went. Let me start out by saying that our God is an amazing God whose Mercies never end. Over the last two weeks our family has wondered how best we should pray for Samuel. Did we pray for his brain to be growing and developing and then need to perform the high risk and painful surgery? Or did we pray that we didn’t have to do the surgery which would entail that Samuel’s brain was still just as damaged as before? In the end we simply had to say ‘Thy will be done oh Lord’, and submit to whatever the good Lord deemed best. And I realized yet again that His ways are far above ours. We came out of the Hospital with the best possible situation, a situation we would not have expected.

The day started out a little rough for Samuel because we had to withhold food from him. The Doctors planned on sedating him to do his MRI. However, upon arriving at the hospital the consensus was that the Doctors felt they could get the information they needed from just the CT scan and then we wouldn’t have to put him through another MRI and sedative. My Parents spent a number of hours waiting for the procedure to be completed and results to be brought out. While all of this was in process Samuel had to have another process done that we had not originally anticipated. Samuel’s stoma (the area around his Trach) did not heal the way it was supposed to. He began to develop skin tags around the Trach which could pose a very serious threat to Samuel if it wasn’t taken care of. So Samuel’s stoma was chemically burnt on Thursday as well. This procedure is now passed down to us (A.K.A my Mom) to do weekly for a month in the hopes that the continuous chemical burn will take care of the skin tags. If not the tags will have to be surgically removed.

We had an amazing miracle happen that day at the hospital, one that may seem odd to some people. It was an extremely gut wrenching blessing, but a beautiful one none the less. Samuel cried, not audibly, but for the first time he cried during his stoma’s procedure. His eyes got red and puffy, his face became blotchy, and tears streamed down his face. This is just another big step for Samuel as he continues down his road of healing. It tore at all of our hearts, but it also was an unbelievable blessing. He has continued to cry when we have to clean the stoma, so this has been a reoccurring event.

Finally Dr. Sugarbaker brought the results. The CT scan showed that Samuel does have a fused skull, but the scan also showed something else. Samuel’s previous MRI’s showed that his brain contained a lot of pockets of fluid where the brain had been damaged and died off. The CT showed that some of those pockets no longer contained fluid. This can mean one of two things, either the brain soaked up the fluid and will refill again, or the brain is beginning to heal itself and reform brain tissue in those areas. This process would take a long time to occur, but it is very possible. The prognosis was that it did not seem wise to put Samuel through the surgery at this time. His brain would still not be pushing on the skull and so it is very likely that the bones would refuse even if we did do the surgery. This is not to say he will never have the surgery. If the brain continues to grow and develop he would then need the surgery, but at this point he has room in his skull for growth. For us this is wonderful news. The Lord is truly wonderful, and not just because things turned out so well. We will praise him no matter what comes our way, though it may not always be easy. In return He continues to encourage and bless us not only with this amazing little bundle of joy, but in constant reminders that He is faithful.

Kaitlyn

Samuel's 24th Update

Samuel has had a good week and is continuing to recover from when he got sick a few weeks ago. All symptoms have been gone for about two weeks, but the cold set him back in his progression on the vent. We hope to have him back to his previous six hours off the vent before long. Right now he is up to four hours at a time.

Over the last few weeks Samuel has begun to move his tongue backwards and forwards when stimulated with a pacifier being moved along his tongue. Speech has ordered an “ice finger” for Samuel that will work similarly to the pacifier we have been using. The difference will be that it is cold. The two biggest stimulants for swallowing are the use of something sour or cold. Because Samuel has so much secretion we don’t believe that something sour would be beneficial. Moving his tongue is the first step towards swallowing, and what a blessing that would be.

We are working on trying to figure out how to calculate Samuel’s calorie intake and balance that against the protein his body needs. Because Samuel is not very active he stores most of his calories and uses very little of those stores unless he is storming. Samuel’s weight has continued to increase normally, but his length has increased at a much slower rate, dropping him from the 90^th percentile at birth to the 10^th percentile at five months. This makes his otherwise normal weight excessive for the length of his body. We are now looking into possibly adding a whey protein to his milk which would give him the building structure for body development but will not add extra calories.

We continue to ask for prayer for Samuel’s appointment this Thursday, and that the Lord would give us discernment. May the Lord bless each of you as you go through your week. I encourage you to look about this week and not take the “ordinary” miracles that surround us for granted. When you see a sunset or the intricacy of a spider’s web remember that those things in and of themselves are miracles. The Lord surrounds us with testimony of His love and His mercies. How can we say there is no God? It is the God who created heaven and Earth that we look to for guidance and strength as we continue to pray for and love Samuel. What an amazing God who could make such an incredible little miracle like Samuel.

Kaitlyn Emery