May 2012


May 28, 2012 - Well I can't believe it has been almost 3 months since I've wrote.  A lot has gone on.  Let me see if I can remember everything!  We've been trying to get the kids out back as much as we can.  Megan loves it, Ryan can take it or leave it.  Ryan loves playing with Megan's kitchen these days.  It is so cute!  He's really been wanting to walk a lot lately and loves going up stairs.  He's still doing good for the most part.  There have been a few times he's got a junky nose and tried to catch something but we just start up his nose flushes and bactroban and it fights it off.  Megan has had one ear infection but other than that we've kept her pretty healthy too.  Ryan continues to like school and he's making slow progress.  Ryan lost on of his crowns this morning.  Not too happy about it so I guess we'll be calling the dentist in the morning.  Megan is doing Magic Tumblebus and loves it.  She looks forward to Thursdays.  She is learning so much at her daycare.  She is talking in full sentences and it amazes us the things that come out of her mouth.  She knows animals that I don't recollect most 2 year olds knowing like hippopotamus and octopus.  She has learned that mom is Holly and dad is Scott.  If she can't get our attention using mommy or daddy she switches to Holly or Scott.  It's prett funny really.  She loves to quiz us on things she knows like color flash cards and then tell us good job when we get it right.  If we say the wrong answer it throws her off, which is also kind of funny.  We have to really watch what we say these days.  Daddy unfortunately was mad at Ryan one night and said 'God damn it Ryan.'  Guess what came out of Megan's mouth.  The same thing.  On occassion it comes out and we have to say don't say that.  Argh!  Oh the fun begins!  She is starting to remember things that I told her months ago so now I have to be careful of what I want to tell her and have her remember.  We're working on breaking the binky this weekend.  It hasn't been as rough as I thought it would be.  We'll see if this holds.  She loves books and she will sit and read to herself (not that she is really reading) and of course we read each night.  She also loves to color.

One story I have to tell is one night I was cooking dinner for the kids and I (Scott was still at work).  Megan had been coloring and Ryan was playing on the floor.  Megan had come into see me and I was getting her into her booster chair when I noticed some black stuff on Ryan's face.  I went over to find out what it was and realized he had been eating the black crayon.  Are you kidding me?  His face was gross but his mouth was worse.  He had it stuck in his teeth.  I slightly freaked thinking how am I going to get into his mouth and dig around with his oral aversion and gag reflex.  I was also trying to remember if crayons were toxic or not (they're not).  As I'm running back and forth thinking what am I going to do and calling Scott to come home and help me, Ryan is just laughing at me.  He thinks I am being so funny.  I took him into the bathroom, laid him on the counter with his face over the sink, and just got into his mouth and brushed out what I could.  I got my finger in there to get out what I could and then used a dental pick thing to get out what I could.  He didn't appreciate it but did much better than I thought.  Little turkey.

 My sister-in-law Diane and niece Sarah came down to Boise for a conference in April so we had them over to spend time with the kids and have dinner.  It was nice to see them.  We had a wonderful Easter.  Megan enjoyed coloring eggs and Ryan didn't care.  Megan was so much fun and had such a blast playing with cousin Hannah.  Ryan had a school play the end of April that was really cute. 

This last round of botox didn't work as well as we hoped so when we met with the orthopedist the beginning of April we decided we were ready to head down the intrathecal baclofen pump route.  This first required us to do a trial.  Ryan had a lumbar puncture where they injected 50 mcg of baclofen into his spine.  Before they did the lumbar puncture we met with the physical therapist who did a base line exam.  Then 2 hours after the lumbar puncture she came back in and did the same tests to see the difference.  Then she came back at hour 3 and hour 4.  The results were amazing.  He didn't fuss, he let us fold him like a pretzel to put him in the sitting position and just sat there.  We were sold and ready to have the procedure done.  We had it done on April 26th.  They inserted a pump literally the size of a hockey puck on his front right side just below his ribs.  They placed it under the skin between the fat and muscle.  Then they run a catheter around the back to his spine and inserted it at T5 so it was high enough to impact his arms.  The surgery went great and Ryan did really well afterwards.  We had to stay the night in the hospital and this time it wasn't in our home away from home St. Lukes it was actually at St. Als.  Scott stayed with Ryan overnight since Ryan takes all food for Scott better than me.  We have mommy/son issues.  We got discharged the next day and then the real fun began!  We had to make it so Ryan didn't hardly do anything - no bending, pulling up, walking, crawling, sitting upright.  Only reclined sitting, laying down were acceptable while he healed and the pump and catheter scarred in over 4 weeks. 

For the first week he was on Norco and Valium so all he wanted to do was sleep - it was an easy week.  As we got off the Norco then he was wanting to start to do more.  The first 3 weeks we did ok but that last week was rough.  We had a hard time keeping him down.  You give him a second and he was crawling. This last week we hit 4 weeks so he is off restrictions!  Week 3 and 4 he got to start back up with speech and OT so he got to go back to school a couple days a week.  His little girlfriend was so excited to see him.  He starts back up tomorrow full time.  Scott took a lot of time off during the 4 weeks, we had my mom come down and help for 2 weeks and then me as well as the great grandparents helped when we could.  We are glad this is over!  The only restriction he has now is we have 2 weeks before he can start back in aquatic PT and we have another month before he can have any dental work done. 

As the swelling has done down you can see the pump more than we originally thought and you can feel it.  We have an ace bandage to wrap him in for crawling even though the orthopedist was pretty happy with how it looked that he said we didn't have to use it but we probably will.  We've gone in a couple times to have the dosage adjusted.  Surgery they set him at 100 mcg per day, then we went to 125 mcg per day and currently we're at 150 mcg per day.  Tomorrow we go back in and I think they will increase the dosage again (or at least we hope they do).  His ankles still aren't as loose as we'd like so we want to go up.  How they increase the dosage is they have a hand held device and they program it and off we go.  He'll be due to have the pump refilled in June.  They just find the reservoir, put a needle in, pull out the old and then put in the new.  It's pretty amazing.  He won't need a new pump for 7 years and now we have to carry a special card because he can set off metal detectors and all that.  We also have to keep oral baclofen around just in case there is a pump malfunction so if we notice him getting tight we'll have to give him the oral kind and call the doctor to get in as soon as we can.  Baclofen can cause withdrawals so we'll really have to watch it. 

So since this has all happened what do we think?  Love it.  He's been ridiculously happy - laughing at everything little thing.  He's sleeping better.  We think he is eating better but drinking worse.  That we'll have to work on.  His hands are definitely more relaxed and he seems to notice it.  One way we've noticed it is the songs like 'Wheels on the Bus' and 'Row Row Row Your Boat'.  He now is able to do the rowing motion and make his arms go round and round where before his arms would just hit as he couldn't control where he wanted them to go.  It's great.  He's been trying to say more words and has had some days where you can't shut him up with his jibber jabber.  We're pleased.  Now that he can get back on track this week we really want to get moving and work hard to get him progressing while we have one more year in the intensive therapy based preschool (he can stay until he is 6). 

Megan celebrated her 2nd birthday on May 7th.  We had a party on the 5th for mainly family.  One of Ryan's nurses made the doggy cake and then we had his feeding therapist make another cake as a backup since we were worried the nurse's father was going to take a turn for the worse and wouldn't be able to make it last minute.  Megan was so cute at her party.  She loved the doggy theme, the doggy cake, and all the presents.  She did really good opening them all and putting them aside so we could do the next one even though she really wanted to play with each one after she opened them. 

Scott and I are doing well.  We had our 7th anniversary April 23rd.  We celebrated by having dinner with Diane & Sarah.  I got a promotion at work and have just moved to a software implementation project for the next year and a half.  I think that is going to keep me really busy.  We continue to be part of the Pediatric Family Advisory Council.  Wishing for more time to get things done and have less to do but that doesn't seem to happen so we continue to plug along as we can.  Looking forward to June as we're headed to San Francisco my birthday weekend (Father's Day weekend) to go to the PGA US Open. 

Well I think that hits the most of it..  We're looking forward to the summer, getting outdoors and enjoying the weather!  Hopefully it won't take me 3 months to update again but don't be surprised if it does.