walking and talking news.

31 08 2010

Nope. He’s not walking yet :). Today, his 2 physical therapists (one from the public schools and one from a private practice) collaborated about what to do with Miles.  It is so nice that they are working together! They both decided it would be best for him to get some orthotics (leg braces).  The funny thing is that he doesn’t physically need them. They both agree that it isn’t a matter of strength or tone. They think it’s more of a confidence/stubbornness thing! So, they want to try orthotics as a way of trying to make him feel more stable and confident.  They also want to try him in a walker like he used to have, a walker with no support for his trunk. I told them, “Hey, we will try anything!”  We are excited to see what happens. We know that he will eventually walk, but he sure is taking his sweet time!

Oh, and when that little boy does walk, we are having the biggest party ever! Both for him, as it will be a huge accomplishment, and for me (and everyone else who has to carry him!).  He is weighing in at about 40 pounds!!!

When I first found out about his diagnosis, and I read that a lot of hydrocephalic children didn’t walk until they were 2,  I was absolutely terrified. You know, back when the words “delayed” and “disabled” made me feel sick to my stomach?

Oh, how things change! We will be thrilled if he walks by 3.  And if he doesn’t, we will still know that we are blessed that he will eventually walk at all. God only knows why some children with this disease are affected so differently. Even if he doesn’t walk until 4, we will still consider that a miracle. He is getting braver and stronger, so it’s only a matter of time.

He is starting to use some complete sentences. This is really cute, because they are usually about something he wants. “I want to go see horses” was his longest so far! His expressive language is really taking off. He still struggles with receptive language. It is very difficult to get him to do things like following instructions or putting toys away in a container, but he is getting better.

Can I just get something out in the open? At times I feel almost guilty bragging about Miles when so many other children out there have it so much worse. But I know, that if those mothers were in my shoes they would do the exact same thing. He is a miracle, all children are. The fact that we get to live this life is a miracle. And I will never, ever take for granted how well Miles is doing. Even if compared to “typical” children he is doing poorly. I have to celebrate him. He is what has been given to me and I cherish him!

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4 responses

31 08 2010
josephine

Never feel bad for bragging about your sweet Miles! One of the most wonderful things about being the parent of a miracle child is that EVERYTHING they do is MIRACULOUS! Every single little accomplishment, even the things that other parents barely notice when their child starts to do it, or even the things that they complain about (“He won’t stay still, I’m constantly having to chase after him…boohoo”, or “She’s talking my ear off! I just wish she’d be quiet sometimes!”), these are all things that we are able to celebrate and rejoice in, in a way that no “ordinary parent” could begin to understand! I seriously believe that this new appreciation for all of life’s many miracles is one of the biggest blessings our extra special children bring into our lives.

31 08 2010
Kristen

Absolutely…cherish, cherish away every piece of that sweet blessedness that boy is and all he does! Continue to write and tell us all about it! I can completely empathize with you, the heart gripping emotion that comes when others aren’t quite as paralleled in their milestones. But I can tell you that even though Cayman does not even nearly talk like Miles does and the doctors are beginning to feel more deeply that she will be one of those hydro kids that never do, I celebrate full-heartedly Miles’ ability and enjoy hearing about him and watching his videos. He is such a fun kid and certainly meant to be celebrated.

1 09 2010
Michelle

I have also felt the same guilt when I post about Owen’s accomplishments. But the truth is that I know that I’m thrilled when I see the other kids’ accomplishments so I just assume that they are thrilled to see Owen’s. We’re all in this together. My Owen has better mobility than some, but he doesn’t really talk. He eats well, but has seizures. So we’re all just happy for what we do have, and happy for what each other does have – just like we’re all sympathetic for what each one is missing.

So brag on Momma!!!!

1 09 2010
sherrilee

Thanks, ladies. I know that I have read other bloggers say that sometimes when they read or hear about another child progressing that it stings a bit. Although I know, ultimately we are all happy for a child progressing and for any new milestones, I just hate to be the cause of that “sting”. Does that make sense? Ugh. I just wish none of our children had problems. But, I guess we aren’t in heaven yet!

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