Ryan's April '09 Blog

April 5, 2009 - We saw the doctor at the Pediatric Abilities Clinic last Monday and decided we would try Botox injections in Ryan's hamstrings to see if that will help loosen them up so we can make some progress with sitting/crawling/walking.  It is not the same type of Botox that is used on faces.  There are like 7 different types.  1 shot last 90 days.  Who would have thought botulism could be use for things like this?  We're hopeful that we will only need one or two shots and that will be enough.  We get our first shot on April 21st.  Dad has been working on stretching Ryan in the bath tub but we're not sure if that is improving things.

Tuesday during physical therapy Ryan ate like a champ but as always hasn't ate well for Mom or Dad.  Mom decided Thursday to be all business to see if that is the difference and he has ate really well for her.  Bottle wise we have been average 600 mls a day since we started giving only 1 feed with a feed of water.  Good job Ryan!  It is a lot of work because we're feeding him like once an hour but we'll do it if it will get rid of the tube.  Friday night Ryan pulled the feeding tube out so we've left it out.  We thought he'd eat better because he is hungrier but it hasn't made a difference.  He's really teething right now so maybe that has something to do with it.  He hasn't ate great today but has also been a little fussy.  But we're able to get his meds in orally except for the vitamins which he can miss a few days of so we're going to keep trying without the tube for a few more days to see if he starts eating more.  Mom talked with the feeding therapist and the physical therapist to see if they thought sensory therapy would help as they have both agreed part of the eating issue is sensory.  They do think he could benefit so Mom is working with the service coordinator to get that going.  The OT that did Ryan's evaluation thought he could use some and didn't think he would need many.  Our PT agrees.  We'll see if we can get that going here soon.

We ran to Parma to Grandma & Grandpa's for a little bit this afternoon and Ryan had a great time playing with everyone.  Now he is taking a nap as he is pretty tired.

Outside of our normal therapies, we see the neurosurgeon this week. 

April 7, 2009 - Just a quick update.  We saw the neurosurgeon today and he is pleased with how Ryan is doing and doesn't want to see us for a year.  That's big!  Ryan still is without his feeding tube.  We're making him work for it and he's been doing pretty good considering he is teething.  He has cut the 3rd tooth on the bottom on each side (didn't even know those were coming in) and the molar on the bottom right side has cut through a lot from the other day.  He has swollen gums top molars on each side and one on the bottom left which has cut through a little more than it had before.  Wonder how he'd eat without all this going on?  Our PT was here tonight and she was very pleased to hear how he is doing and said that it usually takes 3-5 days for the hunger to really set in so tomorrow is day 5.  We will see if we notice anything...  We will probably keep the tube out until the weekend unless his volume goes way down.  We met with an OT yesterday that is giving us sensory consults through the U of I Deaf/Blind Program.  She is recommending a two week program of brushing Ryan.  They will be bringing us some kind of brush next week and show us what to do.  We're to brush his arms, back, legs, etc. every 2 hours.  We have heard of it before so we will see if that helps with any of the sensory eating issues.  With the weather being nice yesterday & today we've been taking walks and he has done very well.  He gets tired of being in the sun but Mom has been pleased with how he has done.  Sunday night we put him in the Jacuzzi with Dad and Ryan loved it.  He was kicking & splashing and had a blast.  Our goal had been to stretch his hamstrings in the warm water but we couldn't get him to settle down long enough so Mom gave him a massage afterwards instead. 

We hope everyone has a Happy Easter!

April 13, 2009 - We hope everyone's Easter was a nice one.  Ours was wonderful - not in a hospital and spent with family.  The Easter Bunny brought Ryan a couple toys, which one he really seems to like.  He didn't get an afternoon nap so he was very tired when we were at Great Aunt Debbie's house.  We tried to lay him down but he didn't want to.  Finally he fell asleep in Mom's arms after dinner for about 30 minutes.  When we got home he seemed to get a little wind until we finally put him down around 8:15 where he quickly passed out.  He looked very cute in his sweater vest, polo & khaki pants.  Of course the battery on the camera died so Mom doesn't think she has any photos of him that will show how cute he was.  Darn!

One bit of great news today.  Mom called the pediatrician and told how much Pediasure he is taking orally and how much he currently weighs.  She asked to find out what numbers we have to hit to keep the tube out and if he needs any extra liquids outside of the Pediasure.  The pediatrician said as long as Ryan is taking 500-650 mls a day he can stay off tube feeds and he shouldn't need any extra liquids unless he is having problems stooling.  This means no more NG tube!  She will want a weight in a month to make sure he isn't losing weight.  We will continue to work with him and try to get as much in him as we can.  We can't tell you how excited we are to not have the tube anymore and to be able to take talk of a G tube off the table!  Keep your fingers crossed that he keeps up the good work!

April 19, 2009 - Ryan continues to do really well taking the bottle - we think hunger helps - but he's keeping his numbers up so the NG tube continues to stay out.  Yesterday we took Ryan and the great grandparents to Twin Falls to see the Shoshone Falls.  We don't know what the actual cfs number was but it was way up there (between 10,000 and 15,000 cfs maybe).  It was very beautiful and a lot of other people decided to make the trip as well as there was quite a line when we were going and it was even worse when we left.  Ryan didn't like sitting in his car seat for such a long period of time but as long as we kept him entertained he was ok but he did throw a few fits.  As we were driving (stop & go) down the canyon Mom had to pull him out of the car seat due to the fit he was throwing.  She got him settled down and he fell asleep in her arms so he got maybe 30 minutes all day.  When we got back to town Grandma & Grandpa came up and we BBQed.  Ryan was more of a snuggle bug than wanting to play. 

We start the Botox injections this week and should start noticing a difference by this time next weekend.  We will also be celebrating Ryan being out of the hospital a year on the 22nd (in a permanent resident  capacity that is) and Mom & Dad's anniversary on the 23rd.  The weather is suppose to be very nice the next few days (into the 80s they say) so we're looking forward to some nice evening walks. 

April 26, 2009 - Ryan got the Botox shots on Tuesday.  He didn't appreciate it but got over it rather quickly.  We should start to see a difference in 7-10 days so hopefully by Tuesday we'll see a noticeable difference.  He had the alternative therapy this weekend and the therapist saw some nice improvements.  Ryan has been teething pretty bad this week - got Mom & Dad up a couple times Thursday night but seems to be doing better today.  Thanks to the teething his feeding numbers dropped from earlier in the week to the end of the week but we're still in the right range.  Thursday during feeding therapy Ryan did much better than he had in the prior couple weeks.  We've been doing the sensory program which entails brushing Ryan and joint compressions.  We're seen some difference but it has not been in the eating area.  With teething during this brushing program it has been hard to tell if he is doing better because he feels better or because of the therapy.  Bad timing on the teeth's part.

The weather was very nice earlier in the week so we took walks each night.  He did ok for the most part but it is still going to take some getting use to.  With all he has gone through he knows what he wants and doesn't want and makes sure you know about it so when we introduce him to new things he protests where a normal child just tends to go with the flow.  It takes us reintroducing it over and over before he becomes ok with it. 

Thursday Mom called the pediatrician to see if we were going to get our last RSV shot.  They said the season ended on April 17th this year so no more shots.  Yeah!  That means we can start taking Ryan out more but we still have to be cautious of people that may be ill.  Mom also asked the pediatrician since we're hitting the numbers could we turn in the feeding pump.  She said she wanted to see Ryan before she decided so we took him in that afternoon.  She was very pleased with Ryan and very happy to hear he was doing imitation and initiating the imitation.  She said we'll hold off on turning in the pump until the end of May just in case but if he is keeping his weight in line and hitting his numbers there is no reason to keep it.  She charted him and for weight he is now in the 50th percentile (60th last time) and 30th for height (15th or 20th last time).  He weighed in at 27 lbs and 33 5/8".  He's had a growth spurt in 3 months.  We also get to drop the home health nurse to once a month and stop her when he is 2 if he continues to grow and do well.  Another yeah!

Ryan continues to make gains but he's still got such a long way to go.  We're keeping our fingers crossed this Botox will help so we can get him to sit on his own and keep the sensory/ABM therapies going to get that nervous system on track so we can get move to crawling and walking and eating.  We look forward to that day when he is more independent and walking around the house getting into things he shouldn't.  I know there are many of you saying I will be taking that back but with all we've gone through and knowing where he should be at this age - we welcome it!