Ryan's December '08 Blog
December 11, 2008 - Sorry it has taken so long to write. We've been busy. Ryan is doing really well. He weighed in at 24 lbs. 7 oz. and measured 30 3/4" long. He continues to be a rolling machine. Earlier this week he rolled over to one of his Christmas presents and was playing with the wrap. Dad moved him back across the living room and the next thing he knew Ryan was back over there playing with it. We like seeing this! He continues to eat although we're more in the 100+ ml range instead of 200. UGH! Eating in the last couple days has been a struggle. We think he is starting the next round of teething and Mom is wondering if it is his first molar coming in based on how his gums feel.
We had the NICU Follow Up Clinic last week. We met with our old occupational therapist and of course Ryan would not perform while we were there but the OT said she'd talk to our PT on a few items to see how he was doing. We then met with the developmental doctor. This was a different one than last time we went. We did not care for the doctor this time. He was all 'what can I do for you today?' We were like you were the one who told us to come here. We felt more like the doctor was writing Ryan off than trying to help make sure he had everything he needed to help him overcome/minimize any issues he may face. After giving him Ryan's history and telling him we're told Ryan has a 100% chance of cerebral palsy but to what degree is the wait and see. He was like it's only 95% chance. By the end of the meeting he was like Ryan has cerebral palsy. He was driving Mom & Dad crazy. Luckily we don't have to go back for a year and when we do we'll make sure the other doctor is working on the day we go. We got the results back and they said Ryan is in the 5-10 month range for most items. We were actually really pleased with this.
We decided we need to have a powwow with our PT because the dev doc said Ryan's tone is horrible and we thought it wasn't that bad but thought we'd better circle up with her to find out how he really is doing. She did say yes there are signs of the cerebral palsy like the delay of how Ryan reacts to things but as far as anything else he really isn't showing signs. She said he does have tone but it is not horrible. It is something that will probably never go away if I remember right but we can work hard to make it as good as possible. She said she'd do some digging about the Pediatric Abilities Clinic as that is where the dev doc wanted to send Ryan so we could have access to walkers and braces (another reason we felt he was writing Ryan off). She came back this week and said she had talked with the pediatric orthopedic doc and he wants to see Ryan. He thinks it is a good idea to go to the Pediatric Abilities Clinic so between the two of them they can make sure his bones and muscles develop correctly as this could be an issue with all the problems we've had. First we'd heard something like this. Ok we'll go for those kinds of things as long as no one else is writing Ryan off. The PT also talked with our neurosurgeon and he also agreed about having a consult with the Abilities Clinic so now we'll get a referral out of either the neurosurgeon or the pediatrician to go to the orthopedic doc and the Abilities Clinic. Add more specialists to our list!
Ryan got approved by Medicaid for his hearing aids so those got ordered and should be here next week. We still have not noticed much difference when he wears the hearing aids but yesterday we had a hearing test. They put Mom & Ryan in a sound proof booth and made sounds in his ear and he was to turn to the right for his reward (a picture on the TV). There was an audiologist in the booth with us to act as a witness to help validate the responses. Ryan did much better this time than last time. There were sounds where his head would snap to attention and look right. Mostly his responses confirmed the earlier test and we did not really learn anything new - no new pitches that he is picking up. So we'll go with he can hear and only time will tell what.
Grandma Connie came last weekend for a visit and we had a nice time. Ryan has definitely changed since she saw him in July.
Last week we also had family photos taken. One of our old NICU nurses does photography on the side so we lined her up to come over and take pictures. Ryan was a turkey and Mom was so worried that there would not be a good shot but from the 20 photos we've seen they turned out wonderful. The one at the top of the page is one of them and then another one or two were sent out in Christmas cards. We'll show more of them once we get the final set of photos.
Today during physical therapy Dad said that Ryan got up on all 4s and him & the PT thought Ryan was going to take off crawling but he didn't. Darn! We'll keep working on it. Mom has been working on him sitting up and while he may be getting stronger muscles in some areas we're still not close enough to sitting up on our own.
Don't know if any of you got the Costco Connection magazine this last month but there was a short article about baby Alex and his foundation. From the article it sounded like he had some similar stuff to Ryan. Mom went out to their website and read his story and could not believe how close it was to ours. He also was born early and had a grade 3 bleed on the left and grade 4 bleed on the right. He was in the hospital for many months before going home and within days was rushed in with an infection. When his neurosurgeon tapped some of the fluid out of his head, the neurosurgeon hit a blood vessel and Alex lost 1/2 his body's blood supply. Between these two issues he now has a shunt so he did not have as much of a mess in the ventricles as Ryan has had. He is developmentally delayed like Ryan and sounds like he shows signs of the cerebral palsy on his left side but has therapies to help him overcome it. After Mom read the story she immediately called Dad to the office. Neither one of us could believe how similar it was to our own struggle. We hate to use the word relief but it was like finally someone else who could really understand what we've gone through. We have not met anyone else that has had anything so similar. When we were in the hospital the staff asked us if we wanted them to find us a family that we could talk to but we were so overwhelmed at first that we didn't. Then as things settled in we became close with a lot of the staff so we felt we didn't need it. Now we wish we would have. Mom immediately wrote Alex's mom and we've been writing back and forth. Their foundation is raising money to fund grants to help research brain injury prevention. We invite you to check out their website www.babyalexfoundation.com. We will be helping them in any way we can.
All of this and no pictures. Sorry. Hopefully I will post something early next week.
December 14, 2008 - Not a lot to write except Ryan got his glasses Friday afternoon. Oh he looks so cute in them. We have to take him in to have them fit to his face (mainly the nose piece). So far he has done really well with them and we've noticed a difference. He appears much more curious and when you talk to him he likes to watch your lips. Dad is farsighted and looked through Ryan's glasses and said he must be really farsighted because Dad couldn't see anything. We've stuck to home this weekend other than Grandma & Grandpa watched Ryan for a couple hours Saturday night so Mom & Dad could go out to dinner with Carter's parents. The grandparents has a good time playing with him and when Mom & Dad got home Ryan was so pooped out so to bed he went. We hoped he would sleep in a little bit but was up around 4:30 this morning. This afternoon Aunt Lindsey came over with some sugar cookies & frosting from K & Shirley. So we stripped Ryan down to his diaper, put him in the high chair and let him try to frost a cookie. See the video for what happened. Tomorrow morning it will have been a year since we rushed Ryan in the with shunt infection and began our 2nd 4 month stay at the hospital. Mom has had some waves of emotions & memories about it over this weekend. We came so close to losing him. This holiday season is definitely more special than ever getting to enjoy it with him at home.
December 27, 2008 - We hope everyone had a Merry Christmas! It is hard to believe it has come and gone already. We had a wonderful Christmas. We went to Great Grandma & Great Granddad's house on Christmas Eve for dinner and a movie. Ryan was in rare form and entertained the whole family as you will be able to tell from the 2 videos. By the time we left it was snowing and blowing so hard the snow was going sideways. Those are the days when we're glad we live so close to them. Ryan was up on Christmas morning by 5 a.m. and was down for a nap by 7:30 a.m. so we didn't start opening presents until about 9 when he got up. He got a bouncy horse and sled from Santa. He wasn't too stoked on either. On his bouncy horse he is actually too stiff and maybe even too big to fit thru the harness so we had to take that off and someone had to hold him on it. He didn't like it at all the first time he got on it but the more he has been on it the better he has done on it. We opened presents and of course he didn't care but we did get him to grab on to some wrapping and pull a little. He got many adorable outfits and toys. Now Mom needs to reorganize his room to get it all to fit! Mom & Dad got a Wii for Christmas (so we can survive being cooped up in the house all winter) so the whole family enjoyed that throughout the day. We even got the great grandparents to play! We had a nice dinner at our house and enjoyed being with family. After dinner we put Ryan in his snow suit, we out in our backyard, put him in his new sled and only went about 2 feet before he threw a fit. We expected it to be a fast trip but not that fast! We'll find us some better snow and try again. We figured he may like it since he loves his wagon rides but this will be one of those things that it will take time for him to get used to doing it. In all it was the best Christmas ever - having him home and getting to be home. It is truly what we needed!
Grandma & Grandpa went to San Diego for the Poinsettia Bowl so we took care of their golden retriever, Tucker until they got back on Christmas Eve. Tucker knows he gets ignored when Ryan is around so he stayed in the guest room a lot but on occasion he would be out with everyone and get jealous of Ryan getting all of the attention. What was interesting was Ryan actually got jealous of Tucker. Mom had Ryan in his high chair working on feedings and she needed to let Tucker back in from outside. She let him in, was only a few feet away from Ryan, and was wiping down Tucker's paws so they were not so wet from the snow when Ryan threw a fit. He was angry. Mom thought oh no not the terrible 2's already! But as soon as Mom was done with Tucker and turned her attention to Ryan he was as sweet as could be. What a turkey!
Ryan weighed in at 25 lbs 1 oz this week and is 31 1/2" long. We have been having problems getting him to eat lately (only taking 20 mls by mouth). Mom started putting him in the high chair to work with him on the bottle and that seemed to improve things as she was then able to get him to take 50-70 mls per sitting. The last 2 days he has done hardly anything but we have more teeth coming in and expect that to be the problem. He was to get his RSV shot on Monday but when our nurse was getting ready to give it she realized the pharmacy didn't send the full dosage so she went round and round with them and they were to overnight the extra dosage. As of today we have not see it. Hopefully the extra dosage will show up Monday as he needs to get his shot.
We've been getting a lot of snow for Boise so we've just stayed pretty close to home this week and expect to do the same next week. Mom & Dad have enjoyed time off this week and look forward to more days off next week! In case we don't update until after New Years, we hope everyone has a wonderful & safe New Years! We're hoping for a quiet 2009! (Keeping our fingers crossed!) Thanks again for checking in on Ryan and how he's doing!