Just like every other little one, Emmett loves to play Peek'a Boo and Hide'n Seek. Emmett loves having his mom hoist him up in the air. Pretending he's an airplane or a race car with his dad is also a ton of fun. One morning after his breakfast Emmett and I played with a bunch of his toys in the living room. Before you could blink, Emmett was playing hide'n seek and making me look for him. (It is slightly within the realm of possibility that perhaps I buried Emmett under these toys.)
There is a difference, however, when playing with Emmett. When being hoisted up into the air or flying like an airplane his head must be supported. The location and placement of his limbs have to be taken into consideration at all times. You've read these words before, but SMA Type 1 is destroying the nerves in his spinal column. He is losing control of his muscles because this progressive genetic disease is removing his ability to talk to his body. His brain is trying but his limbs won't respond the way he wants to. It has affected how he swallows. It will continue to expand its affect upon him. Playing Hide'n Seek, we were having a lot of fun and that was evident from Emmett's eyes and expressions. But I was watching very carefully. A six month old who didn't like getting covered could just knock the offending toy away. Emmett doesn't have the strength in his arms to do that. As a four month old he did.
I couldn't understand why they were doing a sleep study last week at BC Children's Hospital. I was thinking of other things they should have been doing or trying and didn't understand why they thought it was successful. I pointed out a couple of times that he had, in fact, stopped breathing and that's why we were there. How could that be successful? They attributed that to aspirating food/saliva and view the G-Tube as the immedicate solution to that. I still didn't get why they were pleased with the results of the sleep study, but this week his paediatrician explained it in a way that sunk in. Finally. The success was because Emmett's brain was telling his lungs to breathe and they were. There was no hesitation or interruptions. How could that be interpreted in any other way than a massive success. The next major hurdle that Emmett is going to face is when that signal to his lungs weakens and gets interrupted. This was a success because, while he stopped breathing, it was due to aspiration.
Wierd, huh? We're happy because the cause of Emmett's breathing challenge was food/saliva. It's possible that as you read this blog you may think we're hiding from the truth. The fact is, we've peeked around the corner and the truth has us scared silly. It's impossible to hide from because we see it in Emmett every day. We see it as we are dealing with the third feeding pump since Emmett got home on Friday night. Yes, that has caused no end of frustration and grief in this household. Emmett is hooked up to the feeding pump for 11 hours a night and then three big meals throughout the day. That has become a focal point and we're also trying to find ways to get Emmett out of his room. He's only six months old and he already recognizes that his crib means that he's going to be stuck there for a while. Alisha and Josh are trapped too. The portable pump didn't arrive with other supplies today, so at 8:30 p.m. Josh and I were out in the garage sawing and drilling to create a stand to allow Emmett out of his room to watch, well, watch the Lego Movie with us.Yes, we laugh with Emmett and at each other. We laugh at Emmett when he farts loud enough to be heard a block away. We tease him when he fills his diapers to the brim and are even excited about it. We don't want him to cry but we love hearing his voice when he does. We hang on to every eye movement as he follows our conversations, looking around the room to focus upon the speaker. His grin is infectious and he shares it so freely. Because those are all things that he can do. We aren't hiding from the truth but the bigger picture is that Emmett needs to laugh and play and have books read to him and have the opportunity to tiptoe through the flowers (with someone carrying him, of course!). As soon as Alisha gives the all clear, Emmett will be back in his Jolly Jumper and bouncing around the room. As I've said before. Alisha and Josh are living moment by moment and seeking the best of every second. They've had down moments and that is where their family and friends have stepped in with hands and hearts of support. Thank you for caring. Thank you for your emails and cards. Realize that this is a long journey that Emmett, Alisha, and Josh are on. It makes the Lord of the Rings trek look like a picnic in the park.
Through the Internet and at the Children's Hospital they have met other families with babies who are on the same journey as SMA Type 1 has invaded their families also. A terrible bond. An amazing bond. Hide and Seek! Pretty sure they're playing Peek'a Boo and Hide'n Seek with their precious little ones. We will continue to play despite the truth - because Emmett wants to play!