Wednesday, December 23, 2009

Keeping up with the Jones' and Preschool Madness

My offices close at 3 pm today until January 4, so hardly anyone is here today, and the ones that are are blowing off real work, like me! I haven't posted in a long time, not because there is nothing to write about, but because I have been so busy with the end of the year madness that I have hardly had time to breathe.

We are not going away for the holiday break and I am so excited about that. Usually we travel to the East coast to see my parents, but now that the twins are 2 and cost two extra seats AND flying across the country with them is about as fun as sticking a needle in your eye AND it's always a nightmare to travel to and around the East in winter anyway, we opted to stay home. I am a tiny bit sad about not seeing my family and wondering how it will be on Christmas Eve with just my hubby and I, but am planning on making a yummy dinner and got a nice bottle of champers, so it won't be all bad! The twins love our Christmas tree (our first one since they were born) and get really excited when we turn the lights on in the evening. We have been opening the doors of the advent calendar each morning and they have fun identifying santa and horses (reindeer) and mamas (any woman pictured) and trees. It's cute.

Other than the upcoming holiday break, my mind has been filled with thoughts about walkers and preschools. I had a mini breakdown about Drake and (his lack of) a walker a few weeks ago. It seems all my bloggy friends kiddos and kiddos his age at CCS are starting to use a walker. None of this therapists have even mentioned a walker to me. So I finally asked, and his PT told me he wasn't ready. But I pushed and wanted to see if he could do it. So she got him all strapped into his AFOs and stood him in a reverse walker. He stood there for a minute or so, then slowly kinda sank down onto his knees. It was a little heartbreaking to see, but I saw what she meant about not being ready. I just get impatient. Everyone always says how functional Drake is and how his CP is mild/moderate and how well he is progressing. But then I see him at 2 years old and barely able to stand for a minute in his walker and I get confused by the mixed messages. He also steps with a scissor gait (mostly at the ankles), which I get concerned about, but his PTs don't seem so worried about it.

So, I finally gave in and borrowed a stander from CCS and we've been putting him in that 30 minutes twice a day. Standing. Yes, it does come before walking! He does great in the stander actually. It's a very basic type, with pads around the front of the thighs to lean into and a belt around the butt/lower hips. There is no support for the upper body. He stands in it in front of a table and draws or plays or eats.

I have also been thinking about how Drake has very few doctors. Believe me, I am happy about that, but it also makes me think I may be missing something? He sees his pediatrician and a developmental pediatrician. And an eye doctor for his lazy eye. That's it. No neurology. No physiatrists. He's never had an MRI. He's on zero medication. Again, bloggy friends kiddos and other kiddos his age at CCS are starting to get botox and serial casting, etc. None of this therapists has mentioned these things to me. So, I finally just up and made an appointment with a great physiatrist at Children's Hospital Oakland who is practically impossible to see, but somehow I got in.

Will have to add my preschool drama later...


Cary said...

Goodness. Not sure where to start with this one. First, I'm sorry that Drake's not ready for a walker. I will try to offer some's really not all that fun having one. Daniel always wants Ben's and it's a constant fight. Plus, Ben doesn't use his really at all for any REAL this point, it's really just another toy. I am hoping that by spring, it may actually become useful and not just a pain in the neck. (I know this doesn't really help much...but I'm trying...)

As for botox / serial casting, we're not there yet either. And may not ever get there...and that's actually GREAT news! Ben is also on the mild / moderate end of things so this is just an added positive to the situation.

I'm glad you got the physiatrist appointment. We finally saw one last month and I thought she was great and I'm thrilled that she's taking on Ben's case. I feel like we finally have someone else in charge (besides Mommy)!

Merry Christmas! Enjoy it at home with your little ones.

Ellen Seidman said...

Hi, Kelly. I hope you guys had a great Christmas.

Max also needed to learn to stand before he used a gait trainer (we started with a Rifton when Max was about two and three months, then went to a Pony). I know how hard it is to yearn to want to see your child walk, I so do. But, Drake WILL walk. He just has to do it as his own pace, so to speak!

It's great that you're going to see a physiatrist. We did for a while, he's the one who recommended Max get Botox in his hands. Drake may never need that, but it's good to have someone keeping an eye on him.

If you ever have any questions, please feel free to email!

GingerB said...

Hi - I linked to you from Ellen's site. I have to agree that we get mixed messages, my 16 month old daughter is said to be mild to moderate with hemiplegia, and I expect her to walk on her own in the not too distant future, so why are we categorized as moderate. Can you use a regular infant walker? My PTs and therapists are fine with it for us and it fits because my daughter is petite so unlikely to haul herself out and get injured. She also won't stand in the walker at the PT clinic so whatever. Do you have a Shriner's hospital near you at all? CP is considered pre-orthopedic so we get all our care there, for free, in a setting that is vastly better than our local children's hospital. I'd recommend their system to anyone, it is fabulous.

Anonymous said...

Woohoo! for standing! The fact that you took one home and he is using it willingly - that's great! for more encouragement - I did several posts on standing to walking - linked in my middle column.

Sounds like you are working/thinking all the correct things for Drake. Take encouragement from the other mothers here.

Hope your Christmas has been Merry. We opted to NOT travel at Christmas after the first trip between OR and TX when ours was 11 months old. Our first years were holidays with just the 4 of us and frankly I really like it that way. Barbara

Katy said...

I can't remember if Drake is diplegic? Anyway, Charlie's physiatrist told us that there are very specific lege exercises for diplegic kids to help get them walking. Like, stuff with weights, so my guess is that Drake just has weak legs and that's something that will be addressed by time in the stander.

Maybe Drake's not ready for a walker--has the possibility of a gait trainer been mentioned? there are plenty of gait trainers on the market that provide more support than walkers and do allow some mobility practice.

The mild/moderate thing is frustrating I'm sure. We just pure moderate--no mild--and it can be hard to deal with the pace of progress. I want it all now. Our therapists see lots of other children, however, and I think that allows them to be so positive--they can see Drake on teh spectrum of disablility as opposed to in comparison to his typical sister.

Drake will get there!

Hopeful Mother said...

I hear you. For the longest time, I wondered why Alex's PT wasn't suggesting SMOs or AFOs or ANYTHING that would help him walk sooner. I wanted it ALL, NOW.

Only after we had a change in PTs did the idea of a walker even come up for Alex, and even then it was kind of by accident. They wanted him to push a wooden cart - but another child was using it, so they pulled out a walker, and he did GREAT with it. It had never occurred to any other therapist to try one with him yet because they didn't think he was ready.

That being said, it was a major point of contention between the brothers for a while. Carsten would just outright steal it away from Alex. It's gotten better, but sometimes is still an issue.

And Alex is using it as a form of transportation from point A to point B, but not really places in between, so he's not really totally functional with it in a useful way. We take him to the mall to practice, or down the sidewalks, or on the pier etc. but he doesn't really use it inside the house well.

It is helping him with strength and balance, and standing in general, but he is nowhere near walking unassisted at this point.

I'm just remembering back to our first ped. neuro who said that Alex would likely walk between 18-24 mos... and instead it took him until 21 mos. to 4 point crawl! Walking might be on the horizon, but it might not, too. I definitely think that NO ONE can accurately predict what your child will/won't do or when. And that a certain order of skills generally has to occur before walking is even possible. That said, when our new PT said that Alex would probably be walking unassisted by 3 I got GIDDY. Cause she knows him better than our neuro did, and she's very experienced. But it's still just an opinion. Just like "mild" and "moderate" are only what we think they are, and are different to each person.

But I understand your frustrations. Completely. I really believe that Drake will get there in his own time... it's just hard to be patient in the process. And it's even harder when you have a typically-developing child right next to him at home.