Sunday, November 09, 2008

A little here and there

I had great intentions of sitting down tonight when the kids went down at 7:45 and writing up some info from our visits to Hope Haven last week. I got caught up in a family's blog. Take a look if you'd like. They have 22 living at home right now and I loved seeing their family, their home, and their children. They adopted 5 children from Ukraine this summer including 3 siblings and 2 non-related children. They were in the same region we adopted from but a different city. Anyway, I spent a good long time looking through their blog and reading about their neat family... so here's a little bit tonight and then I'm off to get things ready for my crew for tomorrow.

Here are a few of the changes we've already begun to implement with Emma, Micah, and Brianna since our visit to Hope Haven.

Brianna and Micah- gross motor. I'll do these together since they are, strangely enough, needing similar things in this area since they really are close here! Micah is cruising and not yet standing or walking. Brianna is taking steps and walks across the room, etc. but is still not steady or walking on uneven ground or up and down inclines or steps.

Something that was suggested to us was putting couch cushions on the floor for Brianna to walk on, but our couches don't have removable cushions (one does but has a big cover that's a pain to take off!). We do, however, have an extra crib mattress which we'll put on the floor in the playroom. It will be great for Brianna to step up and down off of and to walk across with it being 'squishy' and help her self-correct. It will also help Micah to get up and down off of it and to do 2 hand assisted walking on it as well.

Another thing was climbing. Of course some kids you try to keep FROM climbing, but that's a gross motor task that the kids could use some encouragement on. In Brianna's school room they have a 'cube' slide which I believe she is able to navigate on her own now. I began looking for a used one (and will continue) but in the mean time we've come up with a temporary solution. Outside we have a swingset with 2 slides and a little bridge that connects them. We removed the smaller self-standing slide from the structure and washed it off really good. Mike drilled holes in the bottom of the plastic to drain out the water that had gotten inside and we're bringing that piece in to the playroom. Though it is still helpful outside, it will get a LOT more practice and use inside and there's still a larger slide and the BIG slide outside to play on (and swings!).

Crawling is another thing that will help Brianna specifically to build upper body strength. She's got the butt-scoot perfected and started crawling just before Christmas last year. She crawls more now that Micah is crawling but needs encouragement still. We bought a tunnel last year that we took out when we got the new kiddos home and have been encouraging Brianna to go through it on her hands and knees. We went to a garage sale before our last vacation and got some big square foam mats that go on the floor and cover 4 sq feet each. We lined them up on the end of the playroom and put our alphabet foam mats next to them. Now there's a soft place for the crawling tunnel and the slide to be together.

The big hammock swings from IKEA are also a great PT tool. They can swing and have to correct themselves some, but they can also spin in both directions which is another important thing to do to build up different muscles as well as (I'm sure I won't say this right) something like the way the brain takes in information. Not exactly sure there but I know it's good for them ;)

For Emma for PT there are several things that we'll begin doing. There are three biggies that will make a huge difference for her, I think. The first is the sheer fact that she'll be receiving PT services now. She started on Thursday and I'm very encouraged at how much she can do now versus only a few months ago. The second is knee immobilizers which will keep her knee in a slight bend so that her knees aren't hyperextended as she sleeps. We may also use them for weight bearing- I'm not sure quite yet.

The third is the MOST encouraging as I saw an immediate WOW when we used them at Hope Haven. On Monday I'll be calling our pediatrician for a script for AFO's for Emma. AFO stands for Ankle Foot Orthotic and is similar to the Sure Steps that Brianna wore until recently. This AFO is actually called DAFO (dynamic) and goes up the ankle to mid-calf (or at least the 'test' ones did). I put a pair of these on Emma at Hope Haven and though they were very big for her, the result was amazing. There's a hinge at the ankle and then the angle of the calf to foot was slightly bent. The PT was able to get Emma STANDING and completely WEIGHT BEARING! This was the first time that I've seen this without Emma hyperextending her knees!! Her knees hyperextend so badly that there's almost a 2" difference from where it should be to where her knee is. What a huge difference! I will try to get an appointment for later this week to fill the scripts for the DAFO's and the knee immobilizers. The knee immobilizers are mostly for when she's sleeping since Emma tends to let her legs rest on the rails of the crib and leave her knees hyperextended when she sleeps. OUCH.

I think that's the "big" PT stuff from our visit. More on the Speech, OT, and educational parts later as well as the medical eval for Emma.

If anyone's considering a trip to Hope Haven Down Syndrome Clinic or any other Ds clinic, I encourage you to go at least once and have an evaluation done. Especially if you've adopted your child with Ds and they're older with varying skill sets. I LOVE our local PT, Speech therapist, and OT but it is always great to have another opinion of skill sets. For me, with Emma not receiving any services until right now, Micah making huge gains in some areas (gross motor) and seemingly NONE in others (find motor/speech), it was great to have someone that's never seen the kids before take a rounded look at each area and make suggestions. It's probably not something that was super profound and yes, our local therapists might have suggested the same things, but getting all the info in one place for all 3 kids was a great thing for us right now!


  1. AFOs and SMOs (ones that only go to the ankles) have amazing affects even for children that are not yet walking. I work at a home for kids with disabilities, and have found the hardest thing with these braces is finding shoes that are big enough to go over them.

    The below links are for shoes that are made specifically for that purpose. "My children" say that they are so much more comfortable and easier to put on. Keeping Pace also sells socks that at first glance may just look like any other longer sock that fits under and AFO but really it is made specially to help keep the skin drier as AFOs sometimes cause legs to sweat. The kids also say they are wonderful!

    You should ask the kids' PT if she/he is a supplier of these, if they are, you can get the Keeping Pace shoes at a discounted price. Also if the PT orders the Hstchbacks I believe there is a discount as they are considered a provider.

    Thanks for blogging, I love reading about your journey. I can't blog about the children I work with, but my pride and love for them over flows daily. Your love for orphans and others from Reeces Rainbow is making me think hard that I may adopt a special needs child one day.

    Ali in Northern Illinois

  2. Thanks for sharing Meredith! I love that the journey's of others are there right ahead of me to encourage me and reassure me that when I'm home with our little one we will continue to have an amazing support system through RR.

    On a side note: I just bought that IKEA hammock swing at a yard sale this summer! I just have to get someone over to the house to figure out where I have a strong enough beam to support it! I'm so excited I got it now!