May 2011

May 3, 2011 – At long last I’m finding time to update the website.  It’s been a busy 6 weeks.  Let’s see if I can remember all that has been happening.

We’ve managed to stay healthy until last week.  Ryan got sick on Easter Sunday night and was home Monday & Tuesday.  Megan has been teething but it seems like it has turned into a cold, which is what happened last time.  Scott & I both were feeling cold like symptoms but never got bad. 

We had a nice Easter.  Went to Parma and had dinner with Scott’s family.  The kids looked cute but really couldn’t care about it.  I went to Orlando April 10th to the 15th.  Scott was going to try to handle the kids all on his own but I ended up having my mom come down to help.  I had fears of both kids getting up in the middle of the night and Scott getting extra exhausted.  They all did well but were happy when I returned.  They said Megan was really quite while I was gone.  I had gone to Orlando for a conference and there were about 10 of us from Simplot that went.  We had a great time.  As soon as we got in we went to SeaWorld.  Wednesday night the conference rented out Universal Studio’s Islands of Adventure.  It was awesome – free food, short lines – just us in the park.  We were able to ride every ride and I highly recommend this park.  I am not a Harry Potter fan (actually I’ve never seen the movies or read the books) but that ride is awesome.  It’s a mixture of roller coaster and digital motion ride.  Thursday after the conference was over we spent the day at Disney’s Magic Kingdom.  It’s been about 20 years since I went to Disneyland so it was great to see but it wasn’t too much different than Disneyland.  It did make me excited for the kids to get older to take them.  I think Megan will love it and I was very impressed with how Disney was with disabled children. 

We’ve been busy with our normal hospital council meetings and throughout April we’ve been sharing Ryan’s story at the pediatric staff meetings.  Actually Scott has been sharing the story.  I’ve just been there or ran the PowerPoint.  Some of it still makes me choke up so it’s best to let him do it until I can get past that.  Next month we’ll be sharing Ryan’s story with at the NICU staff meetings.  We will be retiring from our NICU council after this month.  It’s been 4 years since our journey and we feel like it is time to give that one up and focus on the pediatric council.  Scott & I celebrated our 6th anniversary back on the 23rd.  Hard to believe it’s been that long.  Now on to the kids…

Megan continues to develop and grow at lightning speed.  She isn’t walking yet but is standing for periods of time unassisted, walking along everything she can and recently took a step for each Scott & I when trying to go after something she really wanted.  She has been trying to climb on things lately.  She has tried to climb up the footboard of our bed.  She’s been trying to climb into the tub.  And the other night she climbed up on top of the little music table, then stood on it and reached over to the entertainment unit.  Oh my, she’s a handful.  That kid doesn’t have much fear.  We’re starting to phase out the bottle and working on cow’s milk.    It took about a week for her to really start to like milk.  Today I think she took 16 oz. after we got home.  We’ve phased out the daytime bottles of formula to only cow’s milk and I’ll start on phasing out the other bottles shortly.  She and Ryan have been playing really nicely together.  I enjoy seeing it.  Of course there are the times when she steals the toy he is playing with or he’ll do it to her.  Megan moved rooms at daycare.  She and her BFF Bailey are now in a room with more structure.  Apparently they have been doing pretty good with sleeping on the cots versus cribs too.  She’s been cutting molars lately.  Two on top have cut and she’s working on two on the bottom.  Not been fun.  She continues to eat like a champ.  She reminds us of Tucker the dog because she will mooch from person to person no matter if she has just eaten or not.  Scott was crazy enough to give her a taste of wasabi the other night.  She cried and fussed over it and then went back to him for more (which he did not give her luckily).  She really enjoyed going for a walk the other night in the wagon.  She had a blast sitting with brother.  She talked and squealed – it was so cute!  We cannot believe our little girl is going to be 1 this week.  The time has flown by.  We will be having a party with family and close friends.  Hopefully I will get those pictures posted not long after so you don’t have a wait a good month to see photos. 

Ryan has been doing great at school.  He’s been saying more and more words, been sitting unsupported during circle time and just the other day he did that while also participating in circle time (that is huge for him).  He had his first little program at school.  He was a Chuck E Cheese pizza guy.  I was very excited to go and of course had tears in my eyes.  With what we’ve gone through I didn’t know if we’d see a day where he’d be in a program.  You definitely enjoy these little things that everyone else takes for granted.  We got his new walker and he enjoyed using it outside on a nice day a couple weeks ago.  Hopefully this week will be nice so we can do that again.  He got new AFOs and they fit so much better than the other ones.  We didn’t realize how small those really were.  We decided to convert his toddler bed to a double bed.  We’ve been wondering if he’d do better in it and he has done wonderful.  It has also been nice for us when he wakes up and needs help getting back to sleep.  He just wants us to lie next to him until he does.  We had a hearing test a week ago and we thought he gave the best results yet.  By best we mean that you could definitely tell he heard the sound and wasn’t just looking towards the TV waiting for the reward.  The levels are not as high as they were on previous tests (meaning not hearing higher pitches) but that’s ok.  I think we have more solid results to go on.  We saw the orthopedists a week ago as well.  He was pretty happy where Ryan is at and didn’t really recommend any changes at this point.  We did take an x-ray of his hips just to make sure they still looked good since it has been a good year since we had an x-ray on them.  They looked great.  CP kids have a big problem with the hip joint.  Ryan got Botox earlier in the month.  Next time we’re going to have the new orthopedist do it.  We want to see if we get different results because the orthopedist uses ultrasound and nerve stimulation to make sure he injects it in the best place possible.  The doctor that has been doing the Botox just feels and pokes.  We’re never really sure he’s hitting the right spot for optimal results.  We’ll see how next time goes.  It will be late June or early July for the next round.  Feeding has been about the same although for me and his caretaker he’s done worse at drinking.  I’ve been reading a new book on kids with oral aversion and have some new ideas to try.  Once I finish we’ll discuss with the feeding therapist and work on implementing.

We had Great Grandpa Don’s 80th birthday party over the weekend.  It was a surprise party and he was surprised.  We all had a great time.  Later that evening we met up with my brother Mark and his wife Therese.  They made a quick trip down to visit Therese’s sister that lives here and whose health is failing.  We had a nice visit and they got to finally meet Megan.  Megan was in rare form and kept us entertained while Ryan fell asleep.

We have dentist appointments for both kids this week, a Mother’s Day Tea at Megan’s daycare, her 12 month appointment on Monday and an eye appointment for Ryan next Tuesday along with Grandma Connie coming Thursday for the birthday.  It will be a busy week.  Again I will try to update with birthday pictures sooner than later!

May 9, 2011 - Megan is now a 1 year old!  We had such a good time at her party and while she was a little cranky and probably a little over stimulated she had a great time too.  One of Ryan's nurses from the hospital made the birthday cakes and they were SOOOOO YUMMY!  I can't thank her enough!  Megan got tons of clothes and a few toys.  She took a couple steps that day too for all to see.  Side note - Thursday night after my mom arrived she stood up from the floor by herself.  She did it twice but hasn't since.

We hope every mom had a wonderful Mother's Day yesterday!  We had a nice day.  Scott cooked pulled pork and smashed potatoes for his family and my mom.  It was yummy. 

We are off to the doctor this morning for Megan's 1 year check up and shots.  Also hoping to find out if she has allergies.  Her poor eyes have been a mess lately.  Will update with that information next time!

May 12, 2011 - Megan had a great check up Monday.  Weighs 22 lbs 7 oz, 30" long.  75th percentile for both.  The doctor is please with her development and told me to cold turkey her on the bottles so we did that Tuesday and she's been doing great.  Did find out she has an ear infection in her right ear so she's now on antibiotics.  Yesterday I got a call about 3:30 from daycare saying to come get her she was running a fever.  No!  They said she has been pulling at her other ear all day and running a 102.5 fever.  She definitely doesn't feel good.  I'm wondering if she has aches as she is just miserable and acts like she wants to crawl out of her skin at times.  Lots of crying, laying around and not wanting to be far from me.  Not sure if now we have an ear infection in her left ear or if she caught a different bug.  At least we're already on antibiotics if there is an infection in the other ear.  Hoping she will feel better soon.  Still had a fever this morning so doubt she'll go back to daycare until next week.  Why do my kids always like to throw a wrench in things?  They always like to get sick when we either have something planned or it is suppose to be the nicest day of the year.  We were suppose to do the OR tour last night at the hospital but had to cancel.  This weekend it is suppose to be in the 80s and I want to get the kids outside but she may change those plans.