Ryan's March '09 Blog

March 9, 2009 - Since we last wrote we have heard about many people that refuse to go to our neurologist - will take their kid out of state so they don't have to deal with him.  We also know a friend of a friend who contacted us and told us of their issues with the neurologist with their little boy.  We also heard that there had been another pediatric neurologist in town and everyone loved this person and our neurologist apparently force the new one out of town.  We sure hope this does not happen if another new one comes to town.  We will go see one in Spokane versus going back to our current neurologist if a new neurologist doesn't start in the next few months.  It will just be tacked on to our trips to see Mom's side of the family.  Mom & Dad are still unhappy with our neurologist and go back and forth on saying something to him or not.  He still won't give us what we want so is it worth it?  Don't know right now.  We'll chew on this more...

Ryan is doing really well.  He is just over 27 lbs at his last weigh in.  Today we went to the orthopedic specialist and actually got good news for once - Ryan's hips are developing as they should be.  There is still a possibility that he could have issues but if we continue to work with him we should be ok.  We only have to see this doctor every 6 months.  The doctor does want us to go to the Pediatric Abilities Clinic and have them look at Ryan's hamstrings.  He said until we can get them loosened we are not going to make any progress.  We will be making this appointment in the next couple days.  We had more ABM sessions the last weekend of February and Ryan did well.  We haven't noticed any big changes since he had those sessions.  We will be arranging for another weekend session soon.  Feedings have been ok lately.  Nothing new on that front.

We took Ryan to McCall this past weekend.  We wanted to get out of town and wanted to have Ryan try his sled.  He of course enjoyed having the whole family pay him attention and actually slept very well up there which did carry over to last night.  We'll see if it carries on to tonight.  He did very well sledding.  We think we did it right in that we first had him sled with Aunt Lindsey and then after a while we put him in his sled. 

Last night when we got home he was so funny.  Mom was feeding him dinner and she snuck a bite in and he gave the pouty lip and was getting upset.  It made Mom laugh so of course he then tried to smile but then it would go back to a pouty lip, which made Mom & Dad both laugh hard.  He kept going back between pouty lip and smiling - like he couldn't decided what he wanted to do.  It was very funny and gave Mom & Dad a great laugh!

March 15, 2009 - Ryan got weighed in on Friday and weighs 27 lbs 8 oz.  He definitely is a big boy!  He has not done great with eating baby food this week.  He has done horrible for Mom, better with Dad and great with the physical therapist.  Luckily Ryan has done great with the bottle lately.  He is up to 75 mls in about 15 minutes so almost 3 oz.  While that may not seem like a lot, to us it is huge.  Last week he was only doing about 50 mls.  Yesterday his daily total by mouth was 452 mls or 15 oz.  He has been getting between 700-800 mls daily between pump & mouth (650 pump/100-200 by mouth) so he was over halfway of his daily total.  We were very excited about that!  And it is a nice change that when he sees the bottle nipple coming towards his mouth he just opens up and takes it where a week or two ago you still had to fight getting it in.  This weekend we have focused more on that and not on baby food.  We did notice that while he still has two molars on the bottom coming in that have not fully cut through, he has 2 swollen areas on the top where it appears more molars will be popping through in the near future.  We hope this does not make us go backwards again. 

Just normal therapies on our plate this next week.  Friday Ryan is going to be watched by his NICU respiratory tech Linette while Mom & Dad go to the NCAA basketball tournament.  Sunday Ryan will be watched by Auntie Lindsey while we are at the games.  We know he is going to enjoy it very much.  We will also be having more of the ABM therapies on Saturday & Sunday. 

This week will be a bit of an adjustment for us.  For the last 15 months Dad has worked overnights 4 days a week to stay home with Ryan.  Starting tomorrow he will be working swing shift 5 days a week.  He will still take care of Ryan until he goes to work.  There will be about 2 1/2 hours in between when Dad goes to work and when Mom gets home.  The great grandparents have agreed to help during this daily 2 1/2 hour period for the short term until we get through RSV season.  Then we will decide if we get a nurse, nanny or have Ryan go to daycare.  It will suck for Mom & Dad because we will only see each other for a short period in the mornings.  Before we saw each other morning & night each day.  Our goal is definitely to get Dad back on days by the end of the year. 

March 18, 2009 - Not much to write today but wanted to post a few pictures from St. Patrick's Day.  Ok so Mom lied on the not much to write piece.  She just got back from her monthly NICU meeting and got confirmation from the medical director that a new neurologist is indeed coming and is scheduled to start end of August/beginning of September.  We will be making sure we're one of the first patients the new guy sees!

March 28, 2009 - Ryan got his RSV shots yesterday as well as got weighed.  He is 27 lbs. 9 oz.  He has been doing well with the bottle but not so great with baby food - well at least not for anyone but the physical therapist.  For her he eats like a champ.  Our feeding therapist is going to come to physical therapy in a couple weeks to see for herself.  The feeding therapist did say besides the oral aversion being behavioral it is also sensory.  Mom may start pushing for the sensory therapy but needs to talk to our service coordinator.  We're working on bottle feeds this weekend.  We're only giving him one Pediasure feed and then one feed of water overnight on the pump and then making him take the rest by mouth.  So far today he has taken 550 mls and he is still 2 1/2 hours from bedtime.  This is the most we've got him to take orally so we're very excited.  600 mls is the minimum of Pediasure he needs a day to maintain weight.  We need more like 800 a day to continue to gain weight.  We're very proud of him especially since one of the bottom molars is swollen up big time again and he's been a little cranky with it.  If we can get up to 800 even 700 a day for the next week and can get his nighttime meds in him orally - the tube could come out.  We're not holding our breath because he always tends to throw a wrench in things but we are hoping.

Ryan has been a talking machine lately.  He is making more and more sounds with yea yea and goo goo some new ones from the last week.  He is also making a spitting sound that is pretty cute.  Unfortunately this week he has associated it with the word Ma Ma so if you say Ma Ma to him, he'll make the spitting sound.  You say Da Da and he says Da Da.  Such a turkey!  Finally yesterday he finally started saying Ma Ma again and does the spitting noise a little less with the word.  He is such a funny kid.

Last Friday Linette watched him while Mom & Dad were at the NCAA tournament.  They had a wonderful day of playing.  He ate well for her, they went for a walk and to our subdivision park.  She had him go down the slide and they sat on the bench and watched other kids.  Mom came home early at 7 p.m. to relieve Linette and Ryan was definitely tired but still appeared to be having a blast.  Thanks Auntie Linette!  Sunday Aunt Lindsey & Grandma Pam split the watching him.  He slept for most of Aunt Lindsey's shift and was awake for most of Grandma's. 

Wednesday Aunt Diane was in town from Washington state and came by to visit him.  She hasn't seen him since last July so he has changed a lot in person.  He hadn't had a nap so he was a little tired but he still did some playing so hopefully she got to see how fun he is.  We'll be seeing her again in August when we go to Grandma Connie's.

Today we are watching Tucker while Grandma & Grandpa are in Jackpot for the night.  We took Tucker & Ryan for a walk.  As you will see in the photos Tucker was raring to go.  Once you get his leash on him he'll put the other end in his mouth and basically walk himself if you let him.  He's a crazy mut!  We put Ryan in his new jogger/bike trailer and he did ok but wasn't too sure about it.  Mom & Dad sure liked it but it will take some time for him to enjoy it.  When we got home we were playing with Ryan on the floor and Tucker wanted to be part of the action.  We had him lie down next to Ryan and then he proceeded to roll back against Ryan's leg and then tried to lick him.  It was cute but Ryan wasn't too sure about Tucker laying against his legs.

As side note back to our neurologist.  Dad was talking with a lady he works with who also has a son with brain issues so they had been patients of our neurologist as well.  They have had a terrible time with him - way worse than us - where they went to see a neurologist at the Mayo Clinic to get answers because they could not get any information out of our neurologist.  Ridiculous.  She was very happy to hear a new neurologist is starting the end of the summer as they will not go back to our neurologist either.  Mom needs to do some digging to see if the neurologist had a malpractice suit against him or something and that is why he is this way or if he is really just a jerk.  It really is ridiculous that we're hearing so many negative stories about the guy but nothing has been done about him. 

We go to the Pediatric Abilities Clinic on Monday to see about getting Ryan's hamstrings loosened up.  We're hoping something can be done so we can continue to move forward.