Ryan's February '09 Blog
February 7, 2009 - The last two weeks have been rather busy for us. The last week of January we had 1 or more appointments every day. We had our sight therapist and physical therapy as always and our 2nd session of speech therapy. The sight therapist works on a lot of cause & effect type stuff; physical therapy works on stretching, crawling, sitting and feeding; and speech is working on sign language, imitation and getting reactions when things are done. We had an evaluation with the feeding therapist and had a developmental evaluation. The feeding therapist appeared to think she could help us and the developmental therapist thought Ryan was making decent progress. When we got her report our numbers doubled from last August in every section. We had our 18 month appointment with our pediatrician who said we can change from Enfamil Lipil to Pedisure so we can get volume down and try to get him hungry. He weighed in at 26 lbs 10 oz (60%) and measured 30 1/2 inches (15%). We are not sure that is a true height. For some reason we don't believe his leg was totally straight but whatever. He got 3 shots that he did not appreciate. She also sounded like she'd give us until about his 2nd birthday to make progress with his feeding or we'd have to start talking G tube. Oh we so hope this feeding therapist helps! We also had an appointment with the University of Idaho Deaf/Blind Program. This program will be another resource for us to make sure Ryan is getting everything he needs. The nice thing with this program is they stay with him until he is 21 so they will be helping us work through the school system. Until he is 3 they won't be too involved but 3 is when we start going through the school system so it will be very handy to have them on our team.
Last weekend we did the alternative therapy Friday night, Saturday morning & afternoon and then Sunday morning & afternoon. The therapist is an occupation therapist by trade that does this type of therapy on the side. The therapy is called the Anat Baniel Method and it is about doing movements and almost a massage to get the brain to make new connections. It was simple movements - tapping the elbow against the floor or bending the knees and tapping the feet to the floor. By the end of each session Ryan was totally wiped out. In the Saturday afternoon session he fell asleep during it. The therapist thinks Ryan's brain doesn't quite understand his hands and feet and by the end of the weekend we all saw changes - if you had him lying on the floor, knees bent and you tapped his feet to the floor he would use his back to scoot, when she was pulling him up from lying on his back to a sitting position he was putting one elbow down to push up, when he was on his belly and she was working on tucking his leg under him, he got up like he was wanting to take off crawling. It was really great. She said we could also see improvements potentially in his eating as this therapy kicks in. She came back on Tuesday night for a session and noticed changes in him - better head control and opening his hands more. Mom & Dad have also noticed this plus he is rolling more than ever and further distances and he is eating better (don't know if this is from the therapy or the food he appears to like). The therapist has suggested we take him to San Francisco to see Anat Baniel who developed this method or to Salt Lake to one of Anat's top therapists. Our therapist thinks a week of two a day sessions from one of these more experienced therapists could really do Ryan good. We're waiting to hear back from the Salt Lake lady and we'll see what we can line up. Unfortunately this is not something insurance typically covers so we'll have to price it out and make sure we can afford to do it. Until we figure out what we're going to do we plan to continue to see the local therapist as much as we can.
This week we only had speech, hearing therapy and feeding. Like mentioned above we noticed better eating out of Ryan this week. We tried him on level 2 Gerber mac n cheese and he eats more per serving than he has anything else and he takes it willingly. He just opens his mouth, takes it and eats it up. It is amazing. Again we don't know if it was from our therapy from last weekend or that he likes this mac n cheese or what but we'll take it. We took it with us to feeding therapy and he only did so so with it there but the feeding therapist thought he has potential. She got him to let her in his mouth this week and she was even able to do a thermal therapy where she gets her tools really cold sitting in a glass of ice. When she touches the tool into his mouth it is supposed to trigger a swallow. It took a couple times but we believe she got the result she wanted. So we're starting to feel encouraged about his feeding and hoping we're on the right track. We are a little frustrated in that it took us so long to find out about this therapist. Why weren't we told about feeding therapists back when we came home in April? It took our speech therapist mentioning it to us and Mom pushing for it that we finally got one. We could be much further than we are now had we known about this sooner.
Yesterday Mom went to Maternal & Fetal Medicine to see if it could determined why Ryan came early and how to make sure it does not happen again if we decide to have another child. It was determined that Mom's cervix was indeed the culprit and that she is high risk for it happening again. Luckily there are a couple things that will be done and we have a game plan in place if we decide to have another one. We definitely don't want us or another child to go through what we've gone through with Ryan.
February 25, 2009 - My how time flies! Sorry it has taken so long to write. As always, we've been keeping busy. Grandma Connie arrived on the 8th for two weeks. It ended up being perfect timing as when Mom got up on the 9th she was not feeling good and fought a head cold for the rest of the week. Unfortunately Mom has been so busy at work that she was not able to stay home and rest and had to battle through it. Mom did have to stay away from Ryan, which he appeared to be like 'I can see you and hear you but don't understand why you are not picking me up and playing with me.' It was a bit tough on Mom and Ryan but we got through it and Mom was so thankful Grandma was here to help. Valentine's Day was uneventful - Mom & Dad got to sneak out for lunch while Grandma Connie watched Ryan. That night Ryan, Grandma Connie & Grandma Pam hung out and Grandpa Eric & Dad went to the BSU basketball game. (Something's wrong with that picture but we're just thankful not to have spent it in the hospital.)
On the 16th we met with our neurologist. In all the times we've met with him he has yet to give us a diagnosis and prognosis on Ryan. So this time we asked - based on the brain damage what can we expect. You won't believe his answer. He said he does not give that kind of info because he's been burned too many times. It just needs to be a wait and see. WHAT? Are you kidding me? He's supposed to be our brain specialist and he won't give us any agreement or disagreement with what we told him we were told by the neonatologists and the NICU follow up doctor. Oh we were so mad when we left - well Mom was anyway. So Mom called our pediatrician and talked to her about it. She did not think we were being unreasonable for wanting to have a range of possibilities as to what could happen with the localization of the brain damage. Unfortunately right now we do not have any other pediatric neurologists but one is supposed to be starting soon. She said she would scope it out and get back to us and she recommended we go see the new neurologist when he/she arrives in town. Hopefully this will be happening in the next 3 to 6 months.
Nurse Suzi came to visit on the 19th and it was so good to see her. Mom was sitting on the couch with Ryan when she came into the house and as soon as he heard her voice his head snapped to look for her. Mom thinks he recognized her voice. They had a wonderful time playing together and Suzi got to see how much fun Ryan is these days and also got to see his rolling moves.
Grandma Connie left on the 20th and we were sad to see her go. She was very helpful to us and gave us breaks so both Mom & Dad could get some much needed rest. We're going to try to have her come back every few months for a couple weeks like this.
We had another ABM session on the evening of the 20th. Mom didn't think Ryan was as responsive during this session as he has been. We'll be pounding him with sessions this upcoming weekend and hope he'll do well.
Mom went to Vegas for a conference this past Sunday until last night. Dad stayed home and took care of Ryan and they had a good time as always. Ryan was in bed when Mom got home and about an hour later he woke up crying so she went in to settle him down. She was tapping his back and talking to him when he looked up at her and he must of realized he hadn't seen her in a few days as he gave the pouty lip and really started crying. Mom picked him up and comforted him for a few minutes, put him back in bed and he slept the rest of the night. Mom would have rather had a smile than a pouty lip.
One of the pictures this time is Ryan in a baby walker. Yes we know walkers are not a good thing for little ones anymore and very frowned upon but we thought if we could borrow his buddy Carter's walker and get him in it, it might help him figure out he can walk and move around the house and get that light bulb turned on. Mom had him in it tonight and he was going backwards. We'll have to work on that.
Feedings have been going well. We've been trying things other than mac n cheese and he has done ok with them. He definitely does not like sweet things. We need to work more on homemade baby foods. Luckily we still feel like we are making progress.
We had an eye doctor appointment today and the doctor had hoped his left eye would have corrected more - still a little crossed so we go back in 2 months. She is trying to determine if he needs the surgery to fix this or not. Tomorrow we have a 6 month review with our service coordinator. It will be interesting to see if we hear anything we don't already know.
Other than all this Ryan continues to make some improvements and is a happy boy. He entertains the whole family and we enjoy him so much.