Ryan's October '09 Blog

October 4, 2009 - Things have been pretty quiet at our house still.  Mom has had a heck of time getting over her cold and was sick again part of last week.  Ryan's caretakers kids have been sick with bronchitis & pneumonia and so far no signs out of Ryan.  Ryan did get his flu shot on the 25th and will go back in 3 weeks to get a booster and hopefully the H1N1.  We also did other shots that he needed on the 25th - 5 total - which he did not appreciate.  He had a rough day last Saturday (26th) with spiking a temp of 102 and just feeling lousy.  By the time he got up from his afternoon nap his fever had broke and he felt more like himself and was fine the rest of the weekend.  Probably won't do 5 shots at once next time.  Luckily outside of flu/H1N1 he is done with all the other shots until he is 5.

We're seeing some nice progress in his development in terms of grabbing things.  He has been doing really well grabbing a toy and passing it back and forth between hands.  He hadn't really done that.  Last night Aunt Lindsey was putting a toy just out of his reach with his left hand (while on his back) and he rolled onto his side and grabbed it with the right hand.  He is also starting to imitate more.  When we say go he is starting to try to say it as well as good.  He already says all done and sometimes something that sounds like all gone.  We need to get a video of a couple things he does that is cute.  Last weekend while feeding him lunch Mom tried how big are you and stretched out her arms asking if he was this big.  He looked from side to side at her arms and then copied.  So now when Mom asks are you this big he will stretch out his arms and then start clapping.  It's cute.  He also does a cute 'Where's Ryan?'  He'll cover his eyes with his arm and then try to peak out and then take his arm away as you are asking where did Ryan go. 

We went to see the new pediatric neurologist Friday and he is night & day from the other neurologist!  Unfortunately he shares the same office with the bad neurologist and they share patients so when Mom made the appointment she made it very clear the bad neurologist was no longer allowed to have anything to do with Ryan's case and asked for it to be noted on our file.  We gave the new neurologist a brief history on Ryan and what we wanted - the neurologist to tell us what is going on with his brain - that we've never gotten.  We told him what we've been told by other doctors and that we wanted it to come from our brain specialist but that the other neurologist would never do that.  The new neurologist went and was able to pull up Ryan's last MRI and then came back.  He agreed that most of the damage was on the right so motor skill issues on the left was likely but that we are already seeing affects on the right side so Ryan does have a good case of CP.  While we feel Ryan seems intelligent, he is concerned with Ryan's cognitive ability and figures he'll have learning disabilities.  The neurologist said the key for Ryan is going to be intensive OT & PT and continued working with him.  He figures we'll have to do the Botox for some time, which we were hoping the next round would be our last.  He also said Ryan is still in the 6-9 month developmental range.  Basically what we knew or expected and nothing new that was really a shock to us but we finally have answers!   Mom definitely feels like we have failed Ryan.  We tried so hard to do it on our own and as best as we could but we didn't do good enough.  We should have lined up a nurse or caretaker sooner or one of us should have quit our job to focus on him.  We definitely will be picking up the pace going forward on our end.

October 13, 2009 - Things have been quiet at our house.  Just trying new things with Ryan and working him.  When OT came last week he put shaving cream on Ryan's hands to play in it and Ryan started gagging even though it was no where near Ryan's mouth.  He got over that and then did ok with the shaving cream but wasn't actively trying to play in it.  This past weekend we tried whipped cream and he threw a fit - didn't gag but had his hands up in defensive mode and fussed.  We'll be trying again.  We also have finger paints to try.  He continues to do well with the grabbing items and the other day he sat on his own unassisted for 15 minutes.  We brought out his table & chairs set to the living room to use that to work on sitting and for something for him to stand against and play with something.  He did ok with the standing and really great sitting in the chair.  PT worked with him on that this evening and she was amazed at how well he did.  Last Tuesday we had more Botox injections.  This time we hit hamstrings and adductors and PT noticed a difference.  We've noticed as well as Ryan is not crossing his feet as much or stepping on his other foot when we try to stand.  We hope this will help us out.  Saturday morning Mom & Dad will be going to Seattle as we're going to the Seahawks game on Sunday.  We're coming back late Sunday.  Grandma & Grandpa will be coming to stay overnight with Ryan.  Should be a fun experience for them (they will love having him wake them at 6 a.m.) and it will be a fun get away for Mom & Dad (we're keeping our fingers crossed that we'll be able to sleep in).

October 26, 2009 - Mom & Dad had a nice time in Seattle.  We walked a lot around the city.  We were even in bed early Saturday night so while we didn't sleep in we did get a good nights sleep.  The Seahawk game was a bit of a downer on Sunday but in all we had a nice time. 

We got Ryan his H1N1 vaccination this past Saturday.  Central District Health was doing clinics so we showed up at 9 a.m. with Carter and his parents and we stood in line.  We thought we heard we were like 800-900 when we lined up (they only had 1000 doses).  We finally made it to the front of the line around 11:30, got the shot and were in our car heading home just after noon.  Of course standing in line for over 2 hours wasn't much fun - a little cool outside (luckily not raining) and of course Ryan wouldn't sit in his stroller so we had to hold him with Dad doing most of the work.  His arms are now pretty sore.  Right after noon they ran out of the injectable form so we just made it!  We will need to get Ryan another H1N1 in about 4 weeks as they are finding it only has a 7% success rate with the first dose.  We also still need to get Ryan a flu booster but everyone has ran out.  We're to call the pediatrician's office this week to see if they finally received new doses.  Hopefully we can get that done soon. 

We were worried earlier in the week that we wouldn't be able to get Ryan a shot because Tuesday afternoon he woke up from his nap crying so the caretaker got him up to comfort him and he started throwing up.  He threw up on the ottoman and the caretaker.  Dad ran home and Ryan threw up all over him and the floor.  By the time Mom got home Ryan was wimpering (so sad to hear) and snuggling.  Mom took Ryan and he just wanted to snuggle until a bit later when he saw Dad and then started diving to get to Dad.  He tried once more to throw up and that was it.  He had no fever or anything else that we could tell and by about 7 p.m. he was back to his normal self although he was ready to go to bed by 8 p.m.  Wednesday he was back to normal. 

He did really good at feeding therapy and speech therapy this past week and due to his vomiting session he didn't get OT or PT.  He has a new word - awesome.  He appears to take the words 'all done' and tweak them a little bit to make it seem more like awesome.  We'll take it!  With all the flu that is out there we're keeping Ryan in now - no more shopping trips and no football games this year.  Got to keep the little guy healthy.

October 31, 2009 - Happy Halloween everyone!  Ryan has big news to share with everyone.


Yes Ryan is going to be a big brother!  His sibling is due 5/14/10 (Mom's 12 weeks).  All is going well with the pregnancy so far - Mom's just been tired and HUNGRY!  She made sure at her first ultrasound that there were not 2 babies in there (there weren't thankfully).  She feels far more hungry than she remembers with Ryan.  Mom will be having a procedure on the 11th to help ensure that this baby stays in.  The bad thing is starting the 11th Mom can no longer pick Ryan up (no lifting over 20 lbs).  That is going to be a challenge but one Mom will do to help make sure this baby doesn't have to go through what Ryan did.  Dad is going to be called on to do even more than he already does (sorry Dad).  Mom will start weekly shots in 4 weeks and will be on light activity and bed rest as needed.  The doctors & Mom will be working hard to make sure Mom gets past 24 weeks.  The goal is to get to 36 weeks and then Mom can have the baby at any time.  We're going to shoot for full term!  Mom did get her H1N1 last weekend when Ryan did so that is one thing we hope to not to have to worry about.  We are excited and nervous and know we have a lot of work to do with Ryan before this baby gets here.  We need him more mobile.  Boy he has no idea what he's in for when this new baby arrives.  We don't think he is going to like it much but do they ever? 

We sprang the news on Dad's sister, parents and both sets of grandparents last night when we celebrated Dad's 30th birthday.  They were very surprised and excited.  We told Grandma Connie earlier and she is also excited. 

Ryan has been doing well.  He did wonderful for feeding therapy and has eaten dinner twice this week in 15 minutes or less.  Ryan won't be dressing up for Halloween this year.  He doesn't care and won't be trick or treating plus we have football today that we just thought it wouldn't be worth it.