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...

Determination

Just love this picture of Drake my husband took today. He is crawling up the large stairs in our yard and you can see how hard he is working and the extension in his legs to pull his knee up over the lip of the stair.

Feldenchrist

In addition to receiving PT and OT through state-funded California Children's Services, Drake also receives PT once a week at Alta Bates Summit Medical Center, which is billed through our private insurance. A couple weeks ago his PT there informed me that they would be sponsoring and hosting a Feldenchrist conference at the hospital. She said they were looking for a couple kids to be 'models' at the conference and would Drake be interested. She thought of him because he is so easy to work with and is a total people person. I said sure, knowing nothing about Feldenchrist, but wanting to be helpful and because I was curious about the method.

We showed up to a packed conference room with a table and a woman standing in the middle (I believe her name was Anat Baniel and supposedly she is very well known for this method). The whole room was silent as they were filming the whole thing. I surveyed the scene and wondered how Drake would do being so 'on display'. But I strolled him over to the woman, who had a great way with him, and she got him comfortable on the table and started demonstrating her techniques on him. It was truly amazing to watch. I really had no idea what she was doing and she made obscure references to the power of the pelvis and various vertebrae of the spine. There was lots of slamming of hands and feet on the table for sensory input and lots of jiggling the hips back and forth. She worked with him for 45 minutes and he was great the whole time. It was like he was on a float, smiling and waving from his table to the onlookers.

After the session, she noted how he seemed to be sitting straighter through the pelvis. I could see it, too. I don't know that this is something we will pursue further, but it was neat to see a different approach. And we got a $50 gift certificate to Whole Foods for being a participant!

Halloween

We had a great Halloween. This was the first year the twins really got into it. Two years ago, they had just come home from the NICU. Last year, they were adorable dressed up as bugs -- Lucy a ladybug and Drake a bumblebee --but they sat in their stroller as we walked the 'hood and nodded off after a few blocks. This year, dressed as a pirate and a ninja, they eagerly reached into the bowls of candy offered at each house and enjoyed their first real piece of candy -- a lollipop.



Lucy is pretty much over the stroller these days. Our double umbrella stroller is semi-retired -- we now mostly use this cheap single umbrella stroller for Drake and let Lucy walk everywhere. Lucy boldly walked up the steps of each house we "treated". Myself or my husband would take Drake out of the stroller and carry him up to the door. Yes, it was a little tiresome taking him in an out of the stroller all night. But we wanted him to be able to participate, to knock on the door and reach in the candy bowl.

After we got home and put our over-tired, sugared-out kids to bed, my husband said, "I really can't wait for Drake to be able to trick or treat on his own." I realized through all of our ins and outs of the stroller, it never really occurred to me that Halloween could be hell on a mobility-impaired little one. All the walking, all the up and down the stairs, all the running to keep up with the high-on-sugar friends. It kind of bummed me out. We'd had such a fun night and at the end of it I was left thinking about future Halloweens and not savoring the moment of this one.

I consoled myself by thinking a) he will get up and down the street on his own, i just know it and b) he has a great wing-woman of a sister who will always make sure they are both long in lollipops.

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.