There are a few things that have held me back from posting recently… our last post was our 100th post. I had planned on doing a 100 things we’ve learned type of post, but just never found the time, hence the 100th came and went without much ado. But then I thought, I’ll do 101! Well, as you can see, this is also not that post. And our “new” addition (she is now 7 months) still keeps me from being able to sit and think very long at once – and on the rare times I do get a big chunk of time, I am usually squeezing in as much work as possible. We’ve had intermittent childcare, and with more work hours needed than sitter hours available, keeping up with all of the various work buckets I have has been tough. Also, I don’t think anything we have going on is all that interesting most days!!
But cute? That we have a lot of…
Had an invasion from Star Wars characters on Halloween (and got to meet Bumblebee)
First, for all the other families that are in our SB community, sometimes I know I read other families’ blogs to see where their kids were at certain ages. For as much as Spina Bifida is a “snowflake” and no two cases are exactly alike, I have found certain kids that Colten somewhat follows in terms of development, even if it seems to be winding pathways that intersect on occasion. In short, at 3 years and almost 5 months, Colten is walking with AFOs independently and with his walker. He is exploring forearm crutches but they are far from functional and they slow him down. He just got a wheelchair and can climb in and out on his own. He can ride a trike with adaptive pedals (no hand crank!). He goes up stairs by crawling, and down by butt-bumping. He can also do somersaults!
In December, we got Colten articulating AFOs. These are hinged at the ankle. But wait, you say, I thought he couldn’t control his feet?! And you would be mostly correct! He cannot control his right foot or toes at all, and his left he can only pull upwards. However, he kept cracking and bending all his braces near the ankle joint and our Physical Medicine and Rehab doc remarked, “He seems to be trying to tell us something!” So while I requested articulating on the left and solid on the right, they did two articulating braces. On the back was a strap that would lock down or loosen the flexion of the ankle as we desired for him. For the first week or two we left it completely locked just to make sure the braces were fitting properly. Then I loosened up both braces every so slightly. Every. So. Slightly. After about a week of that, Colten asked me to make them tight again. Then after another couple weeks, he asked me to get him braces that “aren’t so bendy”. Since we are in the appropriate time frame, we had them re-made without articulating ankles and picked them up last week. And the left one is already bending and cracking. Sigh. This will give us the option of using an articulating ankle on his left foot if we (he) choose, while keeping the right in a solid AFO. It is obvious from how he was walking that the articulating ankles cause him to be more unstable. He did get a larger set of twister cables as well. Our PM&R doc feels he doesn’t need them anymore, however, our PT feels that they do assist him. So we wear them for PT and other days as we remember to put them on, but not every day like we used to. He seems to have a variety of pain complaints these days – we aren’t sure why – and the cables make his feet hurt – he says. But he has limited/scattered feeling in his feet so it’s hard to tell what the issue might be. Because somedays he claims his braces or regular shoes hurt his feet as well. This is possibly indicative of tethered cord, which would mean another surgery in the near future, but we’re not convinced yet and neither is neurosurgery. It could be that he is starting to get some feeling in his feet!
The forearm, or Lofstrand, crutches, have been a point of struggle and frustration for us. Those of you that follow Colten closely or see him out and about know he can walk without his Kaye walker, and sometimes chooses to use his walker. When walking without his walker, he does stumble and fall, lose his balance, and tire easily. But he’s walking! The crutches are certainly smaller in profile than a walker and can more easily go places a walker cannot, but they take much more skill to use – and patience. Most children simply do not have the cognition to use them efficiently until about age 5-6. We noticed other 3-4 year olds starting on them and jumped into them. What we did not take into account is that the other children using them did not walk fast without crutches – Colten does. So the crutches actually slow him down, for now. We practice with them during therapy and once in a blue moon at home, but they are not functional for his every day use. He did get his own red set, so we sent the pink ones back 🙂
My husband and I have gone back and forth about a wheelchair for Colten over the last year. We finally ordered it in November and it arrived mid-February (shockingly fast). Even after picking it up and watching him wheel around Target, I kept thinking, he can walk. He can walk independently. Why does he need this? Was it too early? Then as he wheeled past me with a smile, raced his brother Max, and moved around the store with ease, he kept saying, “I can do it myself. Don’t push! I can race Max! I love my wheelchair! I’m keeping up with you Momma!” (This from the child that has fought us on every single piece of equipment we’ve introduced!)… I realized the truth to what another SB Mom said to me: “it’s about his happiness”. And so it is. His happiness, his comfort, and his ability to get around with a little more ease, a little less pain. I have a lot more to share about the wheelchair and will do so in its own future post. We’ve learned a lot (not nearly enough though) in the little time we’ve had it and the few times we’ve used it and from the therapists working closely with him. This little blurb hardly scratches the surface!
THERAPIES – PT AND OT
Colten continues his weekly outpatient sessions through Beaumont Children’s Rehab. We enjoy working with our PT there and she always finds ways to engage him in fun play while sneaking some work into it. From finding cars to throwing bean bags to playing basketball… And we see a PT and OT through South Lake Schools for “consultation” therapy sessions once a month.
But the new addition to our team will be another OT, this time through Beaumont. Colten has always scored above his age for OT – which handles mostly fine motor skills (think writing, cutting, buttoning, etc). We’ve always kept him with OT through the school district because it keeps us on track, helps us when we have questions, and there are other things we want to work with them on as he gets older – self-dressing and other self-care skills. However, we requested some help from our Mott team on two specific challenges: food pocketing and noise-induced panic attacks. This is another section that could use an entire blog post so I’ll leave it at this for now. Hopefully when I go to post in the future, we’ll have some interesting things to talk about in regards to the therapy being used.
I now understand why parents go out and do so much after their kids are gone. You can finally enjoy it! Not that Richard and I didn’t enjoy the vacation, we certainly did, but it was exhausting! We drove to Florida (took the better part of 2 days each way) and spent a week in Kissimmee. It was much needed by all of us… except for Max – he says vacations are too much walking. We were given a great opportunity for inexpensive overnight accommodations that we couldn’t say no to (thank you Uncle Gordon for that and so much more!), managed to get a little bit of discount on some ticket pricing (thank you for your help with that Dad – and the beautiful repainting job you did while we were gone!), so off we went!
The short version: we did the Crayola Factory, LegoLand, Disney Springs, and the Kennedy Space Center. With four children 6 years and under, two that are quite dependent on us for their mobility, it was tiring. Exhausting. But at least I had fun on the roller coaster! You’ll understand more when you view the pictures… Enjoy!
This picture is from Ruby Falls in Chatanooga. Great stop, amazing sights inside the cave, well worth the time! Parker was so fascinated – he must have taken about 100 pictures on his camera!
We made it to Florida! Yay for warm weather!
KENNDY SPACE CENTER