Stander and mental spiral

Yesterday I went to pick up Drake from PT only to find him all strapped into a stander. I can’t really explain what happened to my heart right then, except to say that it dropped a bit. He was being supported by padded “clamps” around his mid-section and thighs. There was a big tray attached to the front. There were springs and screws and lots of metal and wood. And he just looked so… trapped.

You see, Drake hasn’t needed any “equipment” yet. And no one has mentioned any equipment to us. So, it was a bit of a surprise to see him strapped into this contraption, especially since he can pull himself to standing already. His therapist saw my face and quickly said, “This is something I am just trying.”

She went on to say that she was trying to follow the directive of his developmental pediatrician. This doctor recently evaluated Drake and said she wanted him to be doing more standing. She wants more weight-bearing through the legs for bone density and for proper alignment of the hip joints. And Drake hates to stand, because he is all about being mobile. He wants to crawl, throw balls, and crawl after said balls. When he pulls to stand, it's as a means to get on the couch or get something off the table. He doesn't like to just hang out standing.

Given that, I feel successful when I can get Drake to stand at a table for 15 minutes. And I can’t do it alone, because someone needs to support him while someone else rolls him a ball across the table. Balls are very important to him right now.

The PT said that while 15 minutes of standing a day is good, she is looking for 30+ minutes of standing 3 times per day. And am I prepared to support Drake in that position for 1.5 hours every day? Well, no, I am not. I have another toddler running amok who needs supervision. Getting 15+ minutes ONCE a day with Drake is almost impossible.

The PT mentioned that this stander has so many springs and such because it is a model where it’s not locked straight upright. This model lets the whole thing move so the kiddo can practice weight-shifting. Hearing her reasons for the stander made logical sense to me. Because I work full-time and have another toddler at home, I don’t have the luxury of manually working with Drake for extended periods of time.

So, I asked her the other questions on my mind. Is this stander something we would borrow from CCS? How long did she think he would need it? Her responses made my heart drop further. No, we’d need to buy this and it’s about $1,800. He would use it for a couple years. A couple years?! I cared more about that comment than the money. All his therapists have said they think he will walk within a couple years. So, how can he walk if they think he needs help standing? She stressed that even if kiddos are walking they often continue to use the stander for stretching.

She also stressed that we didn’t need to decide now if we wanted to buy it. She was just trying it out because she wanted to follow through on directives from the dev ped. She said she wasn’t sure if he 100% needed it, but it’s something to consider.

I left feeling sad and discouraged. Sad from seeing my beautiful boy strapped into this contraption and wondering if this is his future? Discouraged because I don’t feel we do enough for him. His nanny is great, but it’s very hard with two toddlers and one care-giver. She tries, as do we on the weekends, but it’s tough to feel that we’re doing enough. There is very little real ‘therapy’ going on at our house outside of his various weekly appointments.

I know everyone feels this. I know everyone wishes they could do more. I know many parents have seen their children strapped into contraptions and some with more springs and screws than this one. I know, I know. I feel blessed for all that we have and for what Drake can do.

It was just a sucky moment. I think, too, we have been riding so high on all his mostly positive recent evaluations, that this made me realize that even through all the great stuff he can/will do, the CP just isn't going away and never will.

Aqua Boy

I took Drake to his first “Mommy and Me” swim class yesterday. To say he loved it is an understatement; the kid seems to be part fish. He impressed his instructor with his calm entrance into the water and his complete lack of fear getting his face wet (and not just splashed, he likes to submerge his face in the water to blow bubbles).

We spent most of the 30 minutes “swimming” after a ball that he’d grab, throw, and “swim” to again. It was so adorable and encouraging to see him kick his little legs and move his arms to get to the ball. By the end of the class, she had him floating on his back across the pool, which he loved, too.

The pool is heated to a spa-like 93 degrees. And the class is tailored to kids under 3 who have physical and/or mobility issues. There were about five little ones in the class, all with a parent in the water working on the games with them.

We can’t wait to go back. It’s once a week through the winter/spring. I am really excited to have found “something else” for Drake to do that is fun and therapeutic. Also, his pediatrician said swimming is the best activity to do in winter as you can’t catch the flu in a chlorinated pool. It’s way less germ-y than the playground or gym-based class.

Appointments

Drake had two evaluations this week. The first was his bi-annual clinic at CCS. I thought he was seen by a developmental pediatrician there, but it turns out she is a phsyatrist. At any rate, she was the one who 6 months ago told us she thought Drake could "outgrow" his delays and sent us all into that mind-place where miracles happen. I remember being more realistic and thinking "how do you outgrow a brain injury?", but left feeling happy that she felt so positively about Drake and his future development.

This time she was also very positive, but did note the high tone in his knees and ankles that she said she didn't notice so much before. She noted his preference for w-sitting. She noted neurological patterning that would most likely be with him for life. But she also noted how his reflexes are in the normative range, most primitive reflexes are gone, his range of motion is within a good functional range. She noted what everybody notes about Drake, how motivated he is to move, how cheerful and social he is, how great is is that he loves books so much. She feels very strongly he will be an independent walker. Her prognosis: rehabilitation potential good.

Three days later we say a developmental pediatrician who hadn't seen Drake since January. He was rolling and prop-sitting then. She was so excited to see him come crawling down the hall. The first part of the appointment was with her colleague who ran a battery of tasks to measure cognitive, speech and motor skills. Like other evaluations he's had, his social/emotional and cognitive skills are right on track, but surprisingly she put speech at 21 months, which is within normal range. His speech therapist put him at 12-15 months a month or so ago. I felt she was being generous with some of her tests - like if she asked where the duck was on a page in a book and he touched just that page, not the duck, she counted that as correct.

Overall, a great appointment though. She also thinks Drake will walk on his own one day, he is so motivated to move. She told us to keep up the calories as he burns so many moving around. She really wants us to work on more standing, both for weight bearing through the legs for bone building and for preparing to walk. The thing is, Drake hates to stand. He's like, what can I do here? He wants to move. He has places to go.

Always remember...he's the happiest guy!

Mumbo Jumbo

Lots of jumbled thoughts today...

Drake has his next clinic with the developmental pediatrician at CCS (where he receives his therapies) tomorrow. This is the doctor who told us 6 months ago that she thought Drake would "outgrow" his developmental issues and sent everybody into a tailspin of emotions. Obviously, he won't "outgrow" his issues, he may have good rehabilitation potential, but "outgrow", no. I am so curious to see what she has to say now.

Next Tuesday, he has an appointment with another developmental pediatrician that he hasn't seen for 10 months. She is more grounded in reality, so I am curious to get her take, too, and see how it jives with the doctor tomorrow.

Drake just got his next 6-month goals from his PT at CCS (these are to be achieved by February, when he is 2.5 years old):

1) Maintain a high kneel without holding onto anything for at least 15 seconds
2) Pull to stand through a half-kneel (he uses his arms to pull himself up mostly now)
3) Stand holding onto something with one hand while using the other hand to play with a toy

I think he can hit these. He is already getting good at #2, with just a little assistance to plant the foot that is being used for the half-kneel.

We need to buy a new car. We don't know if we should bite the bullet and buy a minivan. We are thinking we will have a walker and maybe a wheelchair to lug around within the next few years. But we have gotten by so far on a station wagon and would love to replace it with another station wagon or small SUV instead of a minivan if at all possible...

Had a great weekend get-away with my husband and the twins last weekend. Spontaneously rented a little cabin in the mountains for a couple nights and enjoyed apple picking and wine tasting and hiking amongst the giant sequoias. The crisp fresh air is so good for all of us.

AFOs

Drake's new "dinosaur" AFOs came today! Here he is modeling them. They look a little long to me, but the fitter didn't seem worried since he won't be crawling in them.