This week I would like to bring a prayer concern to everyone’s attention concerning Samuel. Shortly after Samuel was born we noticed that he had very subtle ridges on his head. You couldn’t see them; you only knew they were there if you felt them. Over the last few months these ridges have been becoming more prominent. Now they are very visible, running down the middle of his head, the back, and from one ear to the other. We have wondered if this could be part of “his head appearing small eventually” that Dr. Hall mentioned after his MRI and ultrasound (or if it was something else we should be concerned about). When Dr. Hall saw the amount of dead tissue in his brain she felt that eventually the brain would not grow enough to cause the skull to expand properly causing his head to look small for his body.
Last week my Mom and Dad took Samuel in to see Dr. Sugarbaker. Dr. Sugarbaker has been extremely optimistic concerning Samuel and has seen things the other Doctors have not. She was one of his advocates during the ethics committee, and she looks past what the charts and statistics say. My mother expressed her concerns to Dr. Sugarbaker and so she looked him over at the appointment. She was very concerned by what she found. Samuel has no soft spot on his head, something he should have until he is at least 18 months old. That and the ridging together are prime indications of a fused skull. She has scheduled Samuel to have an MRI and a CT scan on the 12th of November to try to confirm her assessment. We will use the information from both tests to try to decide an appropriate plan of action. The risks for not doing the surgery are that if his brain were to continue to develop (something most of the Doctors think is not likely) then it could reach its max capacity inside his skull and cause one of two things. The brain could stop developing and he is then stunted at that place, or the brain could continue to expand and the consequences of that would be obvious. This is part of the reason for having the MRI done. We will be able to compare this new MRI to the old one and see if the brain has grown or expanded any. We will also be able to see how much room there’s left in the skull for growth. Based off of what the tests say we will have to decide if we believe Samuel needs the surgery or not.
The surgery is major and would consist of splitting open Samuel’s skull, breaking through the fused plates to allow the brain to continue to grow and expand. From what I understand Samuel would then have to wear either a helmet or a head brace for a year or so to protect his skull from being shifted or damaged. At this point we do not know if Samuel actually has a fused skull, but the Doctor is very concerned that he does. We would appreciate prayers of discernment for all concerning this issue. When we hear anything else we will let everyone know. Thank you, and may God bless.
Wednesday, October 28, 2009
Wednesday, October 21, 2009
22nd Update
Hello everyone. My Father has just handed over the task of Samuel’s updates to me and I hope that I will be able to fill you in as well as he did. This has been a major task for him because of his many other obligations as Husband, Father, boss, employee, and the many other hats he wears during a day. I will try my hardest to keep these updates short and readable, since I am known for rambling on and giving too much detail. I’m sorry if this first one is rather lengthy.
Our family was tremendously blessed last Sunday when we were able to take Samuel to church without the use of his ventilator. Our church has a fellowship meal after every 2nd and 4th Sunday and Samuel was also able to stay for that which totaled to about 5 hours off the vent.
Samuel now has a Physical Therapist, Occupational Therapist, Special instructor, and Speech Therapist (not for speech) who come to the house weekly. Saturday his Special Instructor had scheduled to be here at the same time as OT to learn some of Samuel’s range of motion. So instead of one person working with him for an hour he had two people working with him for 1 hour and 45 minutes. Samuel decided he had had it for the day and the poor guy slept for a few hours after they left. He also made sure to protest whenever any of us messed with him after that. He did really well in spite of all of this and even tried to use some head control while Sue was working on him.
Obviously we would like continued prayer for all of the things previously mentioned in Samuel’s updates, but there are two very specific areas that we would like everyone to pray for that would increase Samuel’s daily comfort. The first of these concerns is his swallowing. There is a difference between Samuel swallowing, and Samuel developing the gag reflex. You can have one without the other. The second is his difficulty with regulating his body temperature.
Samuel has basically no down time. He has care twenty four hours a day (16 hours from nurses and 8 from us when nursing is staffed properly). For Samuel this means he has no uninterrupted sleep. We cannot let him sleep for a few hours without getting him up because it would put him in jeopardy. If he’s not suctioned he could aspirate his oral secretions and this could cause pneumonia.
If Samuel were able to swallow this would mean he could rest more because we wouldn’t have to suction. The suctioning is also shooting us in the foot in some ways because the more you suction the more desensitized his gag reflex becomes. His lack of swallowing will also become a bigger issue when the time comes that he needs more nourishment than the breast milk can provide. Artificial liquidized nutrients are not the best option.
Samuel’s temperature is a big issue for two main reasons. Again we come back to not being able to let him rest. We’ve tried the thermometers that you place on the forehead, but they are not accurate enough. Samuel’s temperature can be 97.4 one time when you check, and shortly after you have to strip him down to his diaper because he’s now 99.8. The end result is that when Samuel’s temperature goes up, so does his risks of storming.
Samuel’s temp struggles will also cause him to become house bound. He usually ends up cold despite all our efforts to keep him warm while he’s out. He usually has three to four layers of clothing and a blanket and still gets cold. Cold and flu season also poses a threat. Samuel has a direct passage to his lungs for germs to travel through. For him exposure means life and death, for us as his care givers it means guarding ourselves as well. We might not be affected by the germs but they could infect Samuel if we are carrying them.
We would like to thank everyone for their prayers, support, and many e-mails sent. We love reading them and knowing that the body of Christ is there to weep with us when we weep, and to rejoice with us when we rejoice. We wish we could thank everyone individually, but know we couldn’t possibly because of the number of people from around the world who have gathered together in prayer. Our reconciliation is knowing that one day you will be rewarded for your service and prayers to our family. The Lord will bless you for your faithfulness in prayer and your love. The Lord has afflicted Samuel with a great trial to bear, but he has also blessed Samuel abundantly for it. He has had the tremendous blessing of ministering and impacting hundreds of people in his short little life. One day Samuel will come before the Lord when his work here is done and the Lord will say “Well done my good and faithful servant.” I look forward to the day when Samuel will have his new body and we will be able to hear him testify of the Lord’s mighty hand. Until then we daily pray and wait for God’s plans and healing of Samuel to unfold. The Lord is faithful, even though the road is hard for Samuel and all those who love him, but on that day when Samuel is given his new body, you will never hear him complain, but praise the Lord his maker for ever breath given.
May God bless you,
Kaitlyn Emery
Our family was tremendously blessed last Sunday when we were able to take Samuel to church without the use of his ventilator. Our church has a fellowship meal after every 2nd and 4th Sunday and Samuel was also able to stay for that which totaled to about 5 hours off the vent.
Samuel now has a Physical Therapist, Occupational Therapist, Special instructor, and Speech Therapist (not for speech) who come to the house weekly. Saturday his Special Instructor had scheduled to be here at the same time as OT to learn some of Samuel’s range of motion. So instead of one person working with him for an hour he had two people working with him for 1 hour and 45 minutes. Samuel decided he had had it for the day and the poor guy slept for a few hours after they left. He also made sure to protest whenever any of us messed with him after that. He did really well in spite of all of this and even tried to use some head control while Sue was working on him.
Obviously we would like continued prayer for all of the things previously mentioned in Samuel’s updates, but there are two very specific areas that we would like everyone to pray for that would increase Samuel’s daily comfort. The first of these concerns is his swallowing. There is a difference between Samuel swallowing, and Samuel developing the gag reflex. You can have one without the other. The second is his difficulty with regulating his body temperature.
Samuel has basically no down time. He has care twenty four hours a day (16 hours from nurses and 8 from us when nursing is staffed properly). For Samuel this means he has no uninterrupted sleep. We cannot let him sleep for a few hours without getting him up because it would put him in jeopardy. If he’s not suctioned he could aspirate his oral secretions and this could cause pneumonia.
If Samuel were able to swallow this would mean he could rest more because we wouldn’t have to suction. The suctioning is also shooting us in the foot in some ways because the more you suction the more desensitized his gag reflex becomes. His lack of swallowing will also become a bigger issue when the time comes that he needs more nourishment than the breast milk can provide. Artificial liquidized nutrients are not the best option.
Samuel’s temperature is a big issue for two main reasons. Again we come back to not being able to let him rest. We’ve tried the thermometers that you place on the forehead, but they are not accurate enough. Samuel’s temperature can be 97.4 one time when you check, and shortly after you have to strip him down to his diaper because he’s now 99.8. The end result is that when Samuel’s temperature goes up, so does his risks of storming.
Samuel’s temp struggles will also cause him to become house bound. He usually ends up cold despite all our efforts to keep him warm while he’s out. He usually has three to four layers of clothing and a blanket and still gets cold. Cold and flu season also poses a threat. Samuel has a direct passage to his lungs for germs to travel through. For him exposure means life and death, for us as his care givers it means guarding ourselves as well. We might not be affected by the germs but they could infect Samuel if we are carrying them.
We would like to thank everyone for their prayers, support, and many e-mails sent. We love reading them and knowing that the body of Christ is there to weep with us when we weep, and to rejoice with us when we rejoice. We wish we could thank everyone individually, but know we couldn’t possibly because of the number of people from around the world who have gathered together in prayer. Our reconciliation is knowing that one day you will be rewarded for your service and prayers to our family. The Lord will bless you for your faithfulness in prayer and your love. The Lord has afflicted Samuel with a great trial to bear, but he has also blessed Samuel abundantly for it. He has had the tremendous blessing of ministering and impacting hundreds of people in his short little life. One day Samuel will come before the Lord when his work here is done and the Lord will say “Well done my good and faithful servant.” I look forward to the day when Samuel will have his new body and we will be able to hear him testify of the Lord’s mighty hand. Until then we daily pray and wait for God’s plans and healing of Samuel to unfold. The Lord is faithful, even though the road is hard for Samuel and all those who love him, but on that day when Samuel is given his new body, you will never hear him complain, but praise the Lord his maker for ever breath given.
May God bless you,
Kaitlyn Emery
Monday, October 5, 2009
21st Update
It has been about a month since my last update and I apologize to all who have sent emails asking for info. I have been very busy playing catch up at work and at home, the new school year has started which requires teaching and grading schoolwork, and getting things setup and into a routine with Samuel’s care. I’ve had an update on my to do list and replying to emails, but it hasn’t seemed to make it to the top. We thank you for all the continued prayers, gifts and for checking his blog site for updates.
Samuel is doing well at home. He is on the ventilator, but we have been doing trials off the ventilator and he is up to anywhere between 3 to 6 hours a day with a minimal amount of oxygen. Samuel is opening and closing his eyes, and at times will track your movement, but still no blinking. He has been moving more and will at times try to turn towards the direction of voices. He has started making some vocal sounds, especially when you are doing something he doesn’t like. He still does not have a gag reflex and we ask for specific prayers in that area. Samuel now weighs 16 pounds, 3 ounces and quickly catching up with his 2 year old big sister. He has made one trip to the pediatrician and has been to church 3 times since he came home.
This will be the last email you receive in your mailbox unless that is the way you prefer to be updated in the future. Since it is becoming more difficult for me to keep these updates coming, I am turning it over to my daughter Kaitlyn, who will be updating the blog site. I’m sure she will be a lot more consistence than I was and she has recently added another video to the site. If you need the address again, it is http://prayforsamuelian.blogspot.com you can check for updates there, but if you would still rather receive the updates by email, I can quickly copy what Kaitlyn posts to the blog and send it to an address list she will create, just reply to this email and let us know that you still want to be updated by email.
Thank you,
Yancy
Samuel is doing well at home. He is on the ventilator, but we have been doing trials off the ventilator and he is up to anywhere between 3 to 6 hours a day with a minimal amount of oxygen. Samuel is opening and closing his eyes, and at times will track your movement, but still no blinking. He has been moving more and will at times try to turn towards the direction of voices. He has started making some vocal sounds, especially when you are doing something he doesn’t like. He still does not have a gag reflex and we ask for specific prayers in that area. Samuel now weighs 16 pounds, 3 ounces and quickly catching up with his 2 year old big sister. He has made one trip to the pediatrician and has been to church 3 times since he came home.
This will be the last email you receive in your mailbox unless that is the way you prefer to be updated in the future. Since it is becoming more difficult for me to keep these updates coming, I am turning it over to my daughter Kaitlyn, who will be updating the blog site. I’m sure she will be a lot more consistence than I was and she has recently added another video to the site. If you need the address again, it is http://prayforsamuelian.blogspot.com you can check for updates there, but if you would still rather receive the updates by email, I can quickly copy what Kaitlyn posts to the blog and send it to an address list she will create, just reply to this email and let us know that you still want to be updated by email.
Thank you,
Yancy
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