I hope you enjoyed reading about how Cayden communicated with the world. My hear no evil, speak no evil, see no evil boy could hear and see and speak! Amazing isn’t it?!
This week I will share more about how my lame son learned to move, it was not quite a walk… but you will see!
Due to the holoprosencephaly, Cayden was considered to also have cerebral palsy. Cerebral Palsy is just a fancy word for brain damage that affects the motor skills part of the brain. We didn’t often call it that, but usually I explained HPE by saying, the effects on the child are similar to Cerebral Palsy. However, for most children, CP it is due to brain damage either before or at birth. Cayden’s was due to his brain being malformed in the womb, not damaged.
So Cayden couldn’t walk or talk. He couldn’t sit in a chair or on the couch. He couldn’t hold up his head until he was about 3. He had extremely low tone, meaning his muscles were just floppy floppy floppy– like a rag doll. It took a lot of mental processing and a lot of physical exertion just for him to lift his arm, to hold his head, and often just to breathe.
The CP diagnosis was helpful in getting equipment (durable medical equipment (or DME)) that was necessary to help us position him properly. VERY few people we dealt with: from doctors, nurses, equipment vendors, insurance processors, therapists, or teachers knew what HPE was or what it meant for his quality of life. But they knew what CP was and how much equipment was necessary for children with that diagnosis. So having that CP on his file really did help with processing the claims and with getting the equipment we needed.
Children’s medical equipment is ridiculously expensive. It’s complicated because it is designed to grow with the child, to keep them safe and position them properly. I don’t think comfort is usually a big thought in the designer’s head, at least not a priority. Some of these items look like medieval torture devices & Cayden thought they were too!
The worst of the bunch was definitely the stander. Kids need to stand and bear weight in their early toddler years in order for the hip sockets and leg bones to form and harden properly. If they do not stand in that age 1-3 year age range, this can cause malformations in the hip joints & later create a need for surgery, as the hips/legs often come out of joint. So standing is a major important necessity. However, this simple explanation was not really given to me, I was just told he needed to stand for digestion, blood flow and strength. Later I learned the main reason was the hip development & I wish I had known! (So I am telling you now… SN moms… get those kids standing!)
The stander. UGH. It was a pain. C didn’t like it. It was uncomfortable. It was awkward to put him into. It was hard to strap him in. And then we needed to entertain him while he was in it. He was supposed to stand at least an hour or more a day. That really was a challenge, with all our running around, and his fighting the process. We did our best & it became a habit, but it is not as easy as it may sound.
This baby stander was a loaner from the therapist’s office. He was not a fan. We would put him in it in front of the TV & hope he would lift his head and watch. Sometimes he would, but it was usually an hour’s worth of whining. Who would want to be strapped into this for an hour? Not being able to move, working muscles that don’t like to work? Its worse than a stair climber for you or me! I didn’t like the style or method of getting him into this stander… imagine trying to make a Raggedy Andy doll stand up while velcro-ing straps around it’s body. And that Raggedy Andy was Cayden & his floppy little head! Not a fun time & usually it took two of us to get him in and out safely.
When it was time to purchase his own, I advocated for a different model & we were approved for the Toddler Rocket stander. It had a tilt feature, so we could lay Cayden down in it & then strap him in. The padding was much nicer & it had an activity tray. This was excellent, and allowed him to play with his cars or toys, color, do school work, or have his talker on the tray. I really liked this stander and thought it suited our needs quite well. He didn’t mind being in it & his hours in it were much easier to accomplish.
Cayden loved to color, particularly Elmo and Sesame Street pictures. He was quite a perfectionist on the pictures and always had to have just the right color for each character or item. He wanted to keep the coloring inside the line, and if he would make a mistake and scribble outside, he would throw down the marker in disgust, push the paper away and not finish the drawing. You can see here how the fused arm bones made writing and drawing difficult for him. We would hold the tip of the marker down onto the paper for him, & he would push it around to color where he wanted.
This stander really became a part of our everyday lives, so we have quite a few pictures of him in it. Here he was at Christmas, I think we were working on singing Jingle Bells & trying to get him to shake the bells to the tune.
When we moved & changed school districts, they ordered him a new stander to use for school. But they didn’t dicuss it with me first, so the one they picked was not a good choice for Cayden. This one was the torture device.
Since we ended up having him on homebound school, they brought it to our house. I think he survived 2 sessions in it before I sent it back, saying it was not going to work for us. This is similar to what they brought us. Yes, it tilted, & yes it would grow with him, but how comfortable would anyone be strapped to a plank of wood? Didn’t work, not for this kid!
Cayden was an interactive, smart social child and I wanted a way for him to fit into the world of his peers, not to make him feel or be less social. It was hard enough to be a kid who couldn’t talk but could completely understand, not even counting the not walking and playing like a normal kid. So I tried to find ways to make his life as ‘normal’ as possible, as much as I could given the circumstances. With all my attempts at trying to make him somewhat fit in, I am humbly reminded in Psalm 1: (NIV)
Blessed is the one
who does not walk in step with the wicked
or stand in the way that sinners take
or sit in the company of mockers,
but whose delight is in the law of the Lord,
and who meditates on his law day and night.
That person is like a tree planted by streams of water,
which yields its fruit in season
and whose leaf does not wither—
whatever they do prospers.
Cayden was set apart. He was unique. He was most likely going to NOT stand in the way that sinners take. But he was going to stay close to us, and close to God. He wanted to be like the other kids, to run & play. I hated to have him sit in his wheelchair at a birthday party & not be able to interact with the other little boys like he wanted to. But he prospered, nonetheless.
As Cayden grew, I was starting to look at other standers, because his Rocket was getting too small. I spent endless hours poring over websites and catalogs, trying to find equipment that would make Cayden’s life better and more productive & make our lives as caregivers more simple. I was looking at either a mobile stander (with large wheels) so he could potentially roll himself around, or a sit-to stand model, where he could sit down in it, be strapped in, then crank it up to stand. I liked either of these options and we were in the process of determining which was going to be a better fit when he passed away.
Cayden was different, we knew that. He was wonderfully made & perfect. But to make him just do the simple things that most of us take for granted was very, very complicated. The complexities of navigating the DME world taught me many things, particularly, patience, perseverance, & HoPE!
Patience because things always took longer than we wanted, and there were always delays. Perseverance because the approval process was always complicated, with more red tape, more people to sign off on things & more battles to fight in proving the ‘medical necessity’ of every item we needed. And then there was always HoPE, that these items would help us help Cayden, and make his life just a little better, day by day.
Tomorrow, more equipment stories to share!