How Could We NOT Be Thankful?

I can't believe it's almost Thanksgiving. We have so much to be Thankful for this year. I know that's said a lot, but really... this has been a pretty unexepected year and we are Thankful.
So what's been going on with us? A lot. Since last I blogged we have celebrated Halloween and found out that this part of our heart journey isn't as closed of a case as we thought it was. Let's start with the part about Halloween though.
Pierson had 5 Halloween events. Yes, 5. This was his 4th Halloween. I've never had to wash his costume before so he could wear it "the next time" before but this time I had to wash it twice! One of the Halloween events was actually at the hospital! Amazing Little Hearts, the support group that we were connected with through our surgeon's office throws a few parties a year specifically for the heart kids who have had surgery at the children's hospital. It was fantastic! They had games, face painting, amazing decorations and you really got the sense that you were not alone in this congenital heart defect thing. We lined up to do a group picture and I looked around and thought, "1 in 100. This is just a sample of what 1 in 100 looks like. Wow." It was great to see all those heart kids running around and playing games. I'm sure it brought joy to Dr. Mendeloff and his staff. It was funny, there was a line to get a picture with Dr. Mendeloff as if he was Mickey at Disney World. He has had his talented hands inside each child there repairing their tiny little hearts. He's definantly our hero and the hero of everyone else there. Something else that struck me was how lucky we are. I know that sounds crazy to non-heart parents but as we looked around we saw kids with G-tubes, on vents, in wheelchairs... we got to avoid that but were by no means immune to being in that same position. We are so blessed.  

A sample of what 1 in 100 looks like.



P's heart surgeon, Dr. Eric Mendeloff



Our precious Child Life Specialist, Margarita.



On Halloween itself we had our good friends and neighbors, the Bailey's over for dinner then went trick of treating. This was the first year P has really "got it" as far as trick of treating. The kids had a blast and we had a blast watching them. When we got back to the house Pierson decided it was his turn to hand out candy. He greeted each child and told them he liked their costume and asked how old they were. What a joy he is! We are so thankful for him, his life and the spirit God has placed inside of him. May He continue to grow it to be kind, thoughtful and friendly so that sweet spirit may be used to win others to the Lord.   

P and B before trick or treating.



Love these 2!



Waiting to hand out candy to more children.

Ok, now to the heart stuff. I'll break this down in to two parts. The first part I ask you to please be diligent in prayer about. A few weeks ago Pierson's wonderful preschool teacher (truly this woman is a gift from God) pulled me aside and showed me some of Pierson's school work. The letter tracing they are working on was very lightly written and sporatic. Two things popped in to my mind: Maybe he's just immature, his birthday is at the end of the school year and Hmmm... maybe I should compare this to some of his school work from last year and see if I see a difference. I compared and I did see a difference. Last year his marks were firm and large... this year his marks were tiny and weak. His teacher also had said he looked almost uncomfortable in his chair and didn't sit well at the table. I work with one of the best occupational therapist in the world and I have learned a lot from her about how our hands work. So, I did some research and found out that some kids can lose fine motor development after surgery. Via my best friend who is a fabulous kindergarten teacher I learned that through the school district I could get Pierson screened for Early Childhood Intervention.
I took Pierson for the ECI screening and here's what we found out: Pierson has a very very high IQ. The little toot was asked to count 11 blocks and he did... IN SPANISH! Show off!!!! After he did that he looked at the screener and me and smiled as if to say "that was pretty awesome, huh?" The screener laughed and said "Very good. Now can you do that in English too?" What do you think gave away that we weren't native Spanish speakers? Our day-glow-white skin and blonde hair? Maybe.  He aced everything on the ECI screening except for the hearing screen on the left ear -- we'll get to that later. However, he really struggled on part of the fine motor skills. They were constantly having to put the pencil back in his hand and I could see what his teacher meant when she said he looked almost painful sitting in the chair. The school disctrict said basically he didn't qualify for any of their services but to keep pursuing help elsewhere. So we did.
We went and got a complete pediatric occupational therapy evaluation and here's what we found out: Pierson made some compensations after his surgery to deal with pain and kept making them after he felt better. By doing this, some of his muscle development was diminished and he is now behind on his fine motor skills development. What this means is he will need a good amount of occupational therapy to catch back up to where he needs to be for an almost 3 and a half year old. This can be done but it's going to be a lot of work and there will be some tough parts. One thing that needs to be done is splinting on his hands. He has been locking his shoulders and in turn using hisarms and hands incorrectly. He is now in the habbit of using his thumb and pointer finger in tandem. The splints need to be worn during school work and eating so his thumb and finger can be retrained to do the right things. I worry about the splints only becaue I'm afraid other kids might ask questions and might make him feel embarrassed? Any ideas on how to make that more fun? I've thought of telling him they're his "Mr. Art" (our recycle man he adores) gloves. They'll be blue, so he'll like that. The wiggeling in his chair is also him making up for some lost muscle control because of how he has been holding his body after surgery. We feel bad that we didn't notice this. But to us, him being able to hit a baseball and run meant he was physically fine. We never thought about him stopping using muscles and how that might effect his body and function.
I guess I thought we had escaped heart surgery without any lingering side effects. In the grand scheme of things, this is small stuff. Pierson doesn't have a vent, he's not in a wheelchair, he can chew and swallow on his own. This is small stuff. God has seen us through bigger stuff these last 4 months. He will see us through this as well. I know this is all just part of God's HUGE plan for Pierson and how He will use/ is using Him and his life and special heart for His glory. (John 9.... I have another blog on that coming)
Also, I thought his heart was "fixed" and having a one year pass from the cardiologist meant it was just like a normal heart now. P had an ENT appointment the other day and the doctor said he heard his murmur. This took me back a little... no one ever said anything about a murmur before. I posted on the Amazing Little Hearts page and several other heart moms said docs always comment on their kids' special heartbeats "murmurs" too. I called our cardiologist just in case and he said that the sound that could be heard when you listened to P's chest was not a murmur but in fact the sound of the blood going past the ridge where the reapair was done. That made sense and made me feel better but was also a wake up call to me that no matter how much I wanted P's heart to be "normal" it isn't, and never will be. It's repaired and we're good for now but there's always a risk. I guess we needed to know that. Denial's a fun place, isn't it?
All in all we are thankful and grateful. We realise if Dr. Adams hadn't taken P's blood pressure seriously and started the chain of events that lead to P's diagnosis we likely wouldn't have Pierson to celebrate this Thanksgiving with. We are thankful that God's plan included having Pierson just waking up as I'm finishing this blog and snuggeling with me in Christmas pajamas with some serious blonde bedhead going on.
Thank you for praying for him friends!!!!