Hank had a CT scan done today on his skull. The poor guy has a rather large Charlie Brown head and one doctor had some concerns about the shape of it in certain areas so wanted to do a scan to be sure that everything was growing as it should.
We were told he would be sedated for this, so that's what we prepared for. However, upon our arrival the nurse asked if it was close to his nap time. I told her that he most likely was tired and she said that in that case we should just try to get him to sleep and have him sleep through the CT scan instead of being sedated. While I am in favor of not using drugs whenever possible, I also know Hank. He has difficulty falling asleep, he is unable to self soothe once he is upset, and he is a very very very light sleeper. As I was explaining this, the nurses response was, "uh huh, uh huh..." She said that's how most kids are and they just end up falling asleep anyway. I tried to explain how we don't know the extent of his drug exposure and how that may effect his ability to calm down and soothe himself to sleep and was again answered with "uh huh, uh huh, well kids usually fall asleep after awhile and like the cradle (board with straps) we put them in." I told her I understand wanting to not use sedation if possible, but that his last series of xrays where he was strapped to a board for 20 minutes did not end in him falling asleep, but escalating in screaming. Furthermore, I tried to explain that he is a very light sleeper and that once we moved him or he heard the CT machine he would wake up anyway. Again, answered with "uh huh, uh huh, I think he'll be just fine." SO we tried it her way which ended in Hank being strapped to a board and crying then screaming for about 20 minutes as I tried to rock him to sleep on it. Once he was almost asleep, a poor little boy next door began screaming which startled Hank who then began crying again. The nurse wasn't around so at that point we decided to unstrap him and pick him up.
Finally an anesthesiologist came in and we explained everything to her. She agreed that he should be sedated. Only one adult could go into the CT room so Justin waited and I took Hank across the hall. Once in the room the people in there said that it would only take about 5 minutes and that it was okay if he cried the whole time and that we should not sedate him. I tried to explain everything to them and they also told me how most kids handle it and assured me it would all be fine. So once again they strapped him to the board and the screaming began. I held him down while they did the scan only for them to come out and say that he moved around too much and needed to be sedated. Poor Justin who was across the hall and still thinking they were just going to sedate him right away was hearing Hank's cries and screams and wondering what was going on.
In the end, he survived, but my hope was that he would not have yet another fearful experience that would once again emotionally set him back. I know they deal with all sorts of people every day and a lot of over protective moms, but it was incredibly frustrating and emotional to not be listened to when you know your child and know what he can and cannot handle. In the end I think it was a lot more difficult on us than Hank, and I am thankful for that.
The good news is that everything came back looking good. There are parts of his skull that have fussed too early, but they are not the significant parts that would inhibit his brain from being able to grow. That was what the concern was. The parts that looked like they have fussed or look abnormal are areas where that normally does not happen so they actually weren't too sure what to make of it. Four different surgeons came in at the same time and they all seemed to agree that they would all have different opinions about what that meant. So they want to see him back in 6 months, but for now they are not too worried. We're very happy and thankful that nothing further is needed!
I know this was a long update on today and I'm very tired so a lot may not make sense, but I know a lot of people were praying and I wanted to let you all know how it went. He seemed to be doing well tonight, but please just continue to pray for Hank's heart and mind; that he would be filled with peace and know he is safe with us. He has other tests to come next month and I pray that he would not have a spirit of fear from all this, but would be unshaken by all that because he somehow knows how much he is loved and cared for.
Thank you to all of you who sent encouraging posts and texts and to those of you who prayed for us today and continue to do so.
Monday, July 18, 2011
Friday, July 1, 2011
Update
Goodness, I'm not even averaging one post a month at this rate. I keep waiting for life to return to a sense of "normalcy"; where the boys will be on a set schedule and I will have a consistent daily routine so I can do things like exercise, blog to keep people updated, cook a decent meal, etc. However, hard as we might try we are still yet to reach that point. Since it has been so long and a lot continues to take place, I'll try to just give a quick update on the boys.
Jack-
Jack is a very passionate little boy. He works very hard at all he does all day and right now he is working very hard on being two. For all you parents out there who have had two year olds you know what I'm talking about, but for us this has been a complete shock. The tantrums, hitting, biting, whining, crying, have been a huge challenge for us. I'm very thankful for the honest Facebook posts I see of people who have toddlers and the things they deal with because it has helped me see that Jack is simply being a toddler and that he's not possessed. Throw on top of it the fact that he is most likely still dealing with a lot in that little head of his, and I guess he's doing pretty good. As far as health goes he does pretty good. He is slowly gaining weight, but is still very small (he's 22 months and 12 month clothing is a little too big). He went from being unable to sleep on his own and crying every night, to falling asleep by himself without any problem, to all of a sudden going back to crying every night. This came out of nowhere and created a pretty miserable experience for all of us every single night. We worked on a new bedtime routine and for the last two weeks or so he has been doing much better in that area (praise God). He still only says a few words (more like sounds) and will be beginning a program where he will have speech and cognitive therapies.
Hank-
Hank continues to come alive more and more all the time. He will be turning one in July, but is capable of doing things that 6 months old do, and not much more. He works so hard every day though. Right now he is trying so hard to crawl and that's all he wants to do all day. He too went through a time of not sleeping that great. For quite a while he would wake up at 2am and stay awake until about 4am- like clockwork every single night. He was also not falling asleep until about 10pm, so needless to say I was not getting much sleep and was on the verge of crazy. He still sometimes wakes up at odd hours, but is doing much better in that area. His health still seems to be an issue though. His reflux went from great to horrible and he began to spit up/ throw up every thing he ate and drank and even began to lose a little weight. He went through some vigorous testing where he screamed and cried as I helplessly watched :(, and so far the tests have come back to show that all his anatomy is good, he just has severe reflux. Most babies who have this outgrow it by the time they are 12 months, but due to his prematurity the doctor said it could be more closer to 15 months. It took awhile to get it set up, but he is finally receiving some therapies. He is enrolled in a program where an educator and physical therapist come to our apartment to work with him every week. The most helpful has been the educator who works with his communication and expressive skills and gives us lots of ideas on things to work on throughout the week.
Areas we need prayer:
Jack-
Jack seems to attach to us a little more as time goes on, but I still don't feel that he understands who we are as "Mom and Dad." Please pray for him in this area. Please pray for our patience with him as well and that we would all find a way to truly bond with each other.
Hank-
One of the ladies who is working with Hank each week mentioned that a lot of foster children she sees who are babies are often shut down emotionally because that is how they were able to deal with all they had gone through. She mentioned that she felt some of that from Hank. When Hank first came to us he resisted eye contact and very rarely smiled. He is doing much better in those areas, but still at times it takes everything we can do to force a little giggle out of him. Please pray that whatever part of him he shut down during those first few months, God will bring life and joy to. Please also pray for his health and for God's peace as he still has several doctor appointments and more tests to come in the following month.
Us-
Finally please pray for me and Justin. That we would be Godly parents and be the mom and dad these boys need and deserve. Also please pray that we would be able to have time with each other to invest in and encourage each other.
Thank you to those of you who have encouraged us through calls, messages, and prayer. It means more than we can say to know that we are being prayed for in this journey.
Jack-
Jack is a very passionate little boy. He works very hard at all he does all day and right now he is working very hard on being two. For all you parents out there who have had two year olds you know what I'm talking about, but for us this has been a complete shock. The tantrums, hitting, biting, whining, crying, have been a huge challenge for us. I'm very thankful for the honest Facebook posts I see of people who have toddlers and the things they deal with because it has helped me see that Jack is simply being a toddler and that he's not possessed. Throw on top of it the fact that he is most likely still dealing with a lot in that little head of his, and I guess he's doing pretty good. As far as health goes he does pretty good. He is slowly gaining weight, but is still very small (he's 22 months and 12 month clothing is a little too big). He went from being unable to sleep on his own and crying every night, to falling asleep by himself without any problem, to all of a sudden going back to crying every night. This came out of nowhere and created a pretty miserable experience for all of us every single night. We worked on a new bedtime routine and for the last two weeks or so he has been doing much better in that area (praise God). He still only says a few words (more like sounds) and will be beginning a program where he will have speech and cognitive therapies.
Hank-
Hank continues to come alive more and more all the time. He will be turning one in July, but is capable of doing things that 6 months old do, and not much more. He works so hard every day though. Right now he is trying so hard to crawl and that's all he wants to do all day. He too went through a time of not sleeping that great. For quite a while he would wake up at 2am and stay awake until about 4am- like clockwork every single night. He was also not falling asleep until about 10pm, so needless to say I was not getting much sleep and was on the verge of crazy. He still sometimes wakes up at odd hours, but is doing much better in that area. His health still seems to be an issue though. His reflux went from great to horrible and he began to spit up/ throw up every thing he ate and drank and even began to lose a little weight. He went through some vigorous testing where he screamed and cried as I helplessly watched :(, and so far the tests have come back to show that all his anatomy is good, he just has severe reflux. Most babies who have this outgrow it by the time they are 12 months, but due to his prematurity the doctor said it could be more closer to 15 months. It took awhile to get it set up, but he is finally receiving some therapies. He is enrolled in a program where an educator and physical therapist come to our apartment to work with him every week. The most helpful has been the educator who works with his communication and expressive skills and gives us lots of ideas on things to work on throughout the week.
Areas we need prayer:
Jack-
Jack seems to attach to us a little more as time goes on, but I still don't feel that he understands who we are as "Mom and Dad." Please pray for him in this area. Please pray for our patience with him as well and that we would all find a way to truly bond with each other.
Hank-
One of the ladies who is working with Hank each week mentioned that a lot of foster children she sees who are babies are often shut down emotionally because that is how they were able to deal with all they had gone through. She mentioned that she felt some of that from Hank. When Hank first came to us he resisted eye contact and very rarely smiled. He is doing much better in those areas, but still at times it takes everything we can do to force a little giggle out of him. Please pray that whatever part of him he shut down during those first few months, God will bring life and joy to. Please also pray for his health and for God's peace as he still has several doctor appointments and more tests to come in the following month.
Us-
Finally please pray for me and Justin. That we would be Godly parents and be the mom and dad these boys need and deserve. Also please pray that we would be able to have time with each other to invest in and encourage each other.
Thank you to those of you who have encouraged us through calls, messages, and prayer. It means more than we can say to know that we are being prayed for in this journey.
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