August 2011

August 14, 2011 – Another busy month at our house.  I had the kids in swimming lessons the month of July.  I had Megan in the Mommy & Me class 2 nights a week and Ryan in the Adaptive Lessons 1 night a week so our Monday – Wednesdays were busy.  The great grandparents helped me out by watching which ever kid didn’t have lessons since I did them at a time when Scott was still at work.  Both kids loved being in the pool and as we’d get closer to the pool and they would realize they were going to get in they would both get excited.  Megan loved to jump off the edge of the pool but only if she was sitting.  If I got her to stand up she was too busy wanting to know what else was going on.  She didn’t know how to blow yet so trying to blow bubbles was her drinking the water so I was really hesitant in putting her mouth close to the water.  Lately she is showing she can blow so now we need her to try it in the water.  I was disappointed in Ryan’s lessons.  This is an adaptive program at the Y for special needs kids.  I expect a teacher that knows how to work with these kids.  I got a high schooler who did not.  This guy wanted to know what I wanted him to do.  Work on getting Ryan comfortable in the water and seeing if we can get him to learn how to swim – why else do you think I’m here?  He had the misconception that Ryan should have involuntary movements since that is what most people think when they think of CP – I did before I had Ryan.  It was frustrating.  Scott had been talking to Ryan’s PT about how much he loves the water and so this week he starts aquatic PT along with his normal PT.  His current PT will be doing it with him.  Unfortunately the pool we will have to go to is all the way across town so we’ll probably have Great Granddad help us get Ryan to it and I will come by after work and stay for the session and then take him home with Scott picking up Megan. 

Ryan had Botox on July 11th.  This time we did it a little different.  Our new orthopedist had Ryan put under anesthesia in an OR, used ultrasound and nerve stimulation to find the right muscle to put the Botox into and then injected it.  We’ve been very pleased with the results.  It’s been some of the best yet.  You can tell that he is happier with it.  He just got too tight before and had a hard time doing very much.  School is saying he is making all sorts of strides now that he is lose.  We’re hoping the next round will be the beginning of October.

Ryan broke his glasses back in June, we had an eye appointment on the 12th and just got his new glasses on the August 3rd.  Hopefully these ones will last longer since they are the Flexon kind. 

We went to McCall the weekend of July 16th and stayed at our friends’ cabin while they were up north in Sandpoint.  It was nice to get away.  Megan loved the little toddler bed they had.  Kept getting up on it and wanting to read her books there.  We had Ryan sleep in it and he kept falling out of bed, probably because he is used to a full sized bed and having room to move.  Each night we got up with him once or twice.  Most of the time his knees were on the floor, his head and arms were on the bed and he was sound asleep.  A couple times he woke up crying because he was totally on the floor and the vent was blowing on him and he was cold. 

We celebrated his birthday on July 23rd.  Had a small family party with Carter & his parents and Ryan’s caretaker & her son.  My sister Zana and her family drove down and my mom flew down for the party.  Ryan got lots of great stuff that will be helpful with his therapy.  He did try a little cake but didn’t appreciate it.  What was really cute is Carter wanted to hold Megan’s hand and she didn’t want to have anything to do with it.  Of course she put on a show for everyone. 

Scott & I went zip lining on July 29th with a few friends from my work.  It was a lot of fun and an odd feeling to jump off a platform 50 feet above the ground or run off the side of a hill and pray the equipment catches the line so you don’t fall.  We’re doing the one outside of Vegas next month.  We saw Bert the Conqueror do it earlier in the year and said next time in Vegas we have to do it.  We’re booked for September 17th.  

We took Megan to see the ENT doc a week after she got off antibiotics on July 20th and guess what?  Fluid was already building up in her ears.  Great.  We opted to have tubes put in.  That was done on August 2nd.  This was the shortest surgery we’ve had.  They headed to the OR around 9:15 and she was back in my arms at 9:30.  Ryan is always grumpy coming out of anesthesia.  Megan is the devil.  Man was she pissed off.  She was crying and screaming and throwing a huge fit.  Finally they said go ahead and go so we were getting in the car at 10 a.m. to go home.  She stayed home with Scott that day and she wore him out.  She’d be happy and then start crying.  Luckily she did take a long nap.  She seems to be doing really well with them.  We have post op on Wednesday to see how they look.

It’s been pretty warm lately so we have been getting the kids into our little pool at home and they have loved it.  Megan is the human sprinkler.  Ryan, if given the opportunity, will do most of the stuff he does at swimming lessons – he’ll float and kick and have a great time.  It has been a lot of fun and how we’re spending our weekend evenings.

Ryan had his 4 year check up on August 4th and he weighed 40 lbs. 9 oz. and is in the 88th percentile.  Awesome!  We’ve always been in the 50 and under so even though he has eating issues he’s doing great.  He is only 20th percentile for height at 38 ¾ inches.  Overall the pediatrician is pleased.  We’re going to have blood work done to check if he needs the synthroid anymore.  That would be nice to get rid of it.  Ryan had evaluations done at preschool and we won’t formally go over all of it until the 31st but they told us with speech he has gained 5 months in development.  That’s great.  They have decided to stop working on signing as he’s really wanting to say the words lately.  The one issue they are finding, and we need to discuss with the ophthalmologist next time, is he does great at recognizing 3D objects like a ball but if you show him a card with a picture of a ball he doesn’t get it.  I believe it is a problem with one of the conditions he has but we’ll verify at the next eye appointment in a couple months. 

Megan is doing great.  Daycare is always telling us how smart she is and they can’t believe how well she talks.  She has really exploded with words and signs.  My favorite thing she says is hello.  It is so cute.  I have to get it on video.  She loves books and songs.  She lives to be outside or in the pool.  She’s walking like crazy and is pretty close to running (Lord help us).  She’s a climbing machine and is constantly getting in trouble for climbing on chairs or on the fireplace.  She has fallen off the fireplace once so far.   At her 15 month checkup she weighed in at 23 lbs 7 oz (65th percentile) and 30 ½ inches in length (55th percentile).  The pediatrician is very pleased with her development and reminded me again that she’ll be figuring out the cabinet locks soon so get prepared.   

The weekend of the 6th Scott escaped us for the weekend and went to McCall with some friends for a guy’s golfing weekend.  They had a good time and golfed each day.  I was home with the little ones and we actually did better than I thought we would.  I escaped for a little bit to have a massage Saturday morning but otherwise it was us playing and hanging out.  This weekend we got in the kiddie pool although Meg is acting like she isn't feeling great.  Think a tooth is bothering her. 

My friend had his cord blood transplant and so far so good.  They will still be in Seattle until October.  In the next month I believe they should know if the cells are going to work.  Keeping fingers crossed!

Sad news, our Patient Care Coordinator at the hospital, Don Scott, passed away last Wednesday.  Him, his son and a couple others were hiking up a high mountain peak in Wyoming.  At the top he slipped and fell to his death.  He helped us out during our 4 month stay in peds and he'd always stop and visit with us whenever we were back for meetings or to visit.  So very sad and tragic.  Our prayers and thoughts go out to his family and our St. Lukes family.