The long road to walking… 28 Days of Cayden, Day 23

Roll, crawl, toddle, walk. Such a normal progression. So normal, so natural most moms don’t question it, or even really think about it. They may compare their kids to their peers, and wonder, “When will my child crawl, climb, walk?” but they don’t usually think, “If only my child could _______.”

This week I’ve shared with you the myriad of devices needed to keep him supported, safe, and seated, but we haven’t talked about walking at all! You may be thinking, another post about research and trials and blah blah blah. This was my life, people. This was what I DID! It was my job, as Cayden’s mom, to figure out how to help him do these things, because just bringing him to the playground didn’t work. I am sick of writing about it after 7 days, think of how tired I was of it after 4 years!

Bear with me one more day & I promise I will change focus for the last 5 days…

I will just go through the progression towards walking and explain how we tried to get C to work through it, some phases had success, others not. All of them were hard for Cayden, and all required some sort of device.

C rolling on ball

Practicing rolling on the ball was a little more fun than the wedge, but still not well liked by Cayden.

Rolling: Ball

Cayden HATED rolling. Yes, all caps, all italic. This is greatly emphasized, I probably cannot emphasize it enough, just how much he HATED rolling. And the therapists (God bless the Amy’s, they really were great!) worked non-stop in trying to get him to be able to roll. Down a ramp. On the mat. On a ball. It was miserable. Try doing therapy with a kid who couldn’t hear, probably couldn’t see much. How do you explain to him what you want and let him know he won’t fall? We used fans and vibrating toys to try to encourage him to do what we wanted, but it was so hard!

Dad & C

Rolling for Grampy with tickles at the end, made the ball work a bit more bearable.

Every time we tried to roll, he would cry. He hated the sensation of falling & had a strong startle reflex. If he was laying on the bed and a breeze went past, he would flail as if he were falling. So rolling down a long incline ramp seemed like falling down a mountainside. That is all I can figure. I worked on it at home on the ball, daily.  We worked at this weekly at therapy for years & finally at some point, I said to the physical therapist, “Please, let’s just stop. Let’s move onto something else. This is torture for him.”

C creepster Crawler

Determined & Focused!

Crawling: Creepster

Did you know there is a special device made just to help kids learn to crawl? Several varieties actually. We found one at the equipment lending library called the Creepster Crawler. This was a cool thing, that suspended Cayden above the floor while allowing him to use his arms & legs to move, in the manner of crawling. It helped to build arm strength, head control & the basic back and forth rhythm of crawling.IMG_2467

His elbow malformations made this a bit difficult & it was HARD for him to do, but he worked hard in it and seemed to enjoy the feeling of ‘flying.’ This piece of equipment was given to us by an aquantaince, but it was a little too big for Cayden. We made it work, but it certainly was WORK!

 

pony

The pony loaner was a good option, but a little big, so hard for him to move.

Toddling: Pony

The gait trainer is the special needs kid version of toddling. It is a semi-supported walking device that allows them to partial bear weight & stand without having to support their full body weight. Again, blessed by the equipment lending library, were able to demo a pony gait trainer. This worked quite well for Cayden, and he enjoyed spending time in it. It was another way for him to be vertical, and to stand at his height rather than sit. He never complained about spending time in it, but he never really got moving in it either. It became sort of a resting spot for him, rather than a piece of exercise equipment. Because of that, we decided to go a different route on his personal walker.

c napping in pony

Cayden enjoyed being in the pony. It was so comfy, sometimes he would have a catnap in it!

 

 

Walking: Pacer

So many choices of kid’s walkers, but none really seemed to be great. Anything that is fully supportive was so big and bulky and our house was getting full! The kid walk was interesting, it supported him in a similar fashion to the stander, but it was hard to get him into it, being as floppy as he was. He had a hard time moving it anywhere also, and then its legs often got in the way.

We ended up with the rifton walker/gait trainer. It was adjustable for height as well as for capability. A supportive seat helped him  bear weight in his floppy legs, he could rise & push, then sit and rest. It also had a tray for his ECO-13, arm rests, & it was sturdy.

IMG_0002 1

The ‘Go Blue!’ Rifton Pacer fully loaded & with the supportive seat.

This was Cayden’s ‘Go Blue!’ He was so excited about getting this, after we did a trial at therapy, he was ready to go & walk! As you know by now, the approval and processing time was about 6 months, so he was talking about it for a long time before we got it. The day of delivery finally arrived. The vendor came to the house to deliver it, and fit it to Cayden. It was an afternoon delivery, I think we were his last client of the day. One big problem, he forgot the supportive seat at the warehouse, which was about an hour away. So he told me “Sorry, I will have to bring it back by at a later date.” HMPH. I was supposed to tell Cayden that he had to just look at this long-awaited walker and not be able to use it for another week? Sorry, but no. I became a Momma Bear and told him, ‘No, it was a mistake, but your mistake. I am not going to allow you to punish my son, you will fix it and make it better. You will bring it back tonight. Sorry, but you are working late.’ Pretty sure he didn’t like me much after that! But he did go get it and fit it that night.

cmas 2007

‘Standing’ with his little sister on Christmas day.

For the uninitiated, dealing with equipment vendors is a very large pain in the rear. They are overbooked, probably underpaid, they always seem to put off delivering much-needed equipment, & usually forget things or tools to properly adjust the gear. They insist that they are the only ones capable of properly adjusting the devices, so you always have to wait for an appointment to get things fixed. Joey & I quickly learned how to adjust the pieces ourselves, so we didn’t have to wait on them, but they usually didn’t like us very much for it. However, we had a young child, who was obviously going to need DME for his lifetime, and they didn’t want to lose us as clients, because we could make them a lot of money over the years. I also learned, from the fiasco with the bath chair, that they get better commissions on certain devices and brands, & will push those items whether they are a good choice for your child or not. Advocacy and learning to speak up loudly for your child, is the only way to make this process a success.

The Go Blue walker was a great piece for Cayden. He enjoyed being in it, but it was really hard work. We would bribe him with pudding, oreos, tickles, toys. Each step he’d get a small bite of chocolate pudding, or oreos. We would promise the best movie if he’d make it around the kitchen. Hard hard work. He needed help in lifting and moving his legs forward, but if positioned properly, he would push with the best of efforts. Tiny steps, tiny progress.

Healing

One day Peter and John were going up to the temple at the time of prayer—at three in the afternoon. Now a man who was lame from birth was being carried to the temple gate called Beautiful, where he was put every day to beg from those going into the temple courts. When he saw Peter and John about to enter, he asked them for money. Peter looked straight at him, as did John. Then Peter said, “Look at us!” So the man gave them his attention, expecting to get something from them.

Then Peter said, “Silver or gold I do not have, but what I do have I give you. In the name of Jesus Christ of Nazareth, walk.” Taking him by the right hand, he helped him up, and instantly the man’s feet and ankles became strong. He jumped to his feet and began to walk. Then he went with them into the temple courts, walking and jumping, and praising God. When all the people saw him walking and praising God, they recognized him as the same man who used to sit begging at the temple gate called Beautiful, and they were filled with wonder and amazement at what had happened to him. (Acts 3:1-10)

Now is the time when I say just how great his progress was & “Praise God! Cayden jumped to his feet and began to walk!” Right? That is the history of Cayden’s vision and hearing and talking miracles. It was not the case with walking. He never had the opportunity to walk here on this earthly ground unsupported, unattached.

The truth of the matter is that I don’t think that he would have been able to walk unsupported, ever. His tone was just too floppy, his legs too weak. I think he was progressing toward getting somewhat mobile, but truthfully I think as he made strides in the power chair, he would have just wanted to spend the time working on the speed of the chair, rather than the more turtle-like pace of the walker. And who could blame him?

But here is the great miracle. The last night Cayden spent on earth, his grandparents were babysitting. The bedtime story they read to the kids was from Cayden’s Read with Me Bible & THIS was the story.

A Man Who Could Not Walk (Mark 2; Luke 5)

One day Jesus was teaching. Some men came carrying a man who could not walk. But they could not get him close to Jesus because of the crowd. They made a hole in the roof above Jesus. Then they lowered the man through it on a mat. They lowered him into the middle of the crowd, right in front of Jesus.

When Jesus saw they had faith, he said to the man who could not walk, “Get up. Take your mat and go home.” Right away, the man stood up. He took his mat and went home praising God. All the people were amazed. They praised God and said, “We have never seen anything like this!” 

My parents said that Cayden was so thrilled by this story. He was giggling and cooing and jabbering after it. In my heart, I firmly believe that Cayden understood this story, and understood that healing was possible through faith. I think his prayer that night was to be healed, to be made whole, so when Jesus called his name that night, Cayden KNEW in his heart that if he went, he would be able to stand up, go to his heavenly home and praise God.

Our son is healed. He is whole. He is dancing in fields of grace. As 2 year old Skylar said, He sits in the lap of Jesus, singing ‘Jesus Loves Me.’ Cayden is now made perfect in Christ, hearing, seeing, singing, dancing, running. His chains are gone. He’s been set free.

Shira

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The healed paraplegic from the Children’s Bible, praising God!

 

 

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To sleep, perchance to dream… 28 Days of Cayden, Day 22

 

Ahh, sleep. Something I didn’t experience very much while Cayden was here. It was a rare and unusual night to have a good night’s rest, and I’m not sure I had too many honest-to-goodness REM sleep dreams. Obviously, when he was a newborn, sleep was uncommon. Particularly then. Since he fed so slowly, it was about a 2 hour process to feed him. I would get up, wake Cayden up, change him, feed him (at least 45 minutes right there), cuddle him and play with him some before he fell back asleep. Then pump for 30+ minutes, clean and put away the pump stuff, preserve the milk. By then at least 2 hours were gone & they wanted him to eat every 3 hours, start to start. So that left 1 hour for me to catch a catnap before it was time to start again.

c bassinette

The bassinet was huge when Cayden first came home. Love his position in this picture!

One benefit to C’s not being able to nurse was that Joey could take a few feedings & usually got the early morning and the late night feedings so I could take a bit longer rest. Add in all the daytime appointments and just daily life stuff… sigh. I was a bit of a zombie for months, that’s for sure.

As Cayden got older, he never really did learn to eat faster. He ate larger quantities, but it pretty much always took him 45 minutes to eat, whether it was 30cc or 8oz or a bowl of pureed food. The only benefit was he ate less often so we had a bit longer between feeds, so a bit longer to rest.

However, it was not usual for Cayden to go to sleep easily. He had a hard time falling asleep, like most kids with HPE, and a hard time staying asleep.  He couldn’t roll himself over in bed, so we had to go re-position him several times during the night. He had sleep apnea, so he would wake himself up from sleep as well. And he had a super hard time getting to sleep.

Joey & CWe had a nightly ritual of him cuddling with Daddy. Mommy was not good for sleep. Eating was for Mommy, sleeping was for Daddy. So he had to fall asleep on Joey, which usually resulted in Joey sleeping too. I would put C to bed & he would sleep for several hours before needing a change or repositioning. Cayden did need to take melatonin nightly, to help fall asleep. We also tried chloral hydrate for a while, but that was a very strong sleep medication and it had some breath suppressing qualities if dosed improperly, so we didn’t like using this one very often.

A bassinet worked well for Cayden for quite some time, because he was so tiny. He then moved to the traditional crib and that was fine for a while too. But as he got older &  more active we had a problem. He would spin himself around somehow and get his legs or arms caught in the crib rails. Having such poor motor skills made it impossible for him to un-do himself once he was caught, so he would cry and carry on until he was saved by one of us. We were afraid he was going to break a leg or something this way, so I had to make a special mesh barrier that covered the crib rails so he couldn’t get tangled up in them.

But this didn’t seem like a good solution anymore. So I started researching beds. Did you know they have so many special needs beds & they are among the hardest piece of equipment to get approved? There are electric beds, large crib-style beds for kids who need restraint or for kids who will fall out, beds with side rails, beds with covers. Again, so many choices, so many things to think about.

Recliner sleeping

Catnaps were popular, as was sleeping in the recliner. It helped his sleeping to keep his head elevated, particularly if he had trouble breathing from a cold or illness.

We decided we needed an electric bed with tilting head & feet, so we could keep his head elevated & his airways open. We also definitely needed bed rails, because he would have easily fallen off. We didn’t need a ‘cage’ style, because climbing out was not our concern, falling out was. But the crib-style beds were even more difficult to get than a regular adult electric bed.

I finally somehow got the right person to say the right thing about medical necessity & we were approved for a rental electric bed. This would come out of his medically fragile allowance (this also helped pay for his diapers & therapies), and could go indefinitely. After a period of time renting, the bed would be his (we would have purchased it) so it was basically a rent-to-buy. It had a special gel mattress top to help prevent bedsores, and electric raise/lower/lift controls as well.

new bed

Cayden’s new bed, in his newly decorated room. I used blankets on the rails, to help keep him in & the tilt feature was like a little ride for the kids! Smiles all around!

We also had a special positioning pillow called the Versa-Form that was a great method of keeping him on his side & in the proper open-airway position. This was a vacu-form pillow, with a hand pump vacuum. It was sort of like a bean-bag filled balloon. We would smoosh it around him as we needed, then suck the extra air out & it would stay in the position we chose. We made a sort of trough for Cayden so sleep on his side in, he couldn’t roll either direction when in this properly.

We had contemplated many times about getting overnight nursing care for Cayden, but really his needs were not that severe, other then the re-positioning. By the time he was 3 or so, he was not wetting his diaper at night, so that wasn’t an issue. He just needed the rolling over like anyone would. His apnea was a concern, but we felt we had it under control by the positioning.

As I’ve mentioned before, Cayden unexpectedly passed away in his sleep on Feb 1, 2008. Nothing abnormal had happened in the weeks preceding his death, he had been making outstanding progress. We didn’t know what happened to cause it. We did not ask for an autopsy, but left his body alone to not make him endure another time of being ‘under the knife.’ Our belief is that he had a bad apnea episode that shut his breathing down too long and he couldn’t recover. Perhaps it caused a grand mal seizure. We don’t know. We are okay not knowing. We can wonder and guess, but truthfully we believe his pre-determined time had come.

We go back to Psalm 139 to re-enforce this concept:

Oh yes, you shaped me first inside, then out;
    you formed me in my mother’s womb.
I thank you, High God—you’re breathtaking!
    Body and soul, I am marvelously made!
    I worship in adoration—what a creation!
You know me inside and out,
    you know every bone in my body;
You know exactly how I was made, bit by bit,
    how I was sculpted from nothing into something.
Like an open book, you watched me grow from conception to birth;
    all the stages of my life were spread out before you,
The days of my life all prepared
    before I’d even lived one day.

And this is where I say… be careful what you pray for. I had been praying regularly for peace, for a better sleep solution, for rest. I had been running ragged and was tired. I wanted Cayden to make progress and to be healed. I was asking for the chaos (that our last few months had been) to slow down, and to find more time to just be. I needed progress on the DME we had been trying to get approved because he was outgrowing his stander, he needed a power chair & a bath chair. We were really considering getting night-time nursing, I actually had already spoken with the care agency to try to find someone for us. But adding a person into the house while we were sleeping was frightening to us. We had not had the best luck with caregivers recently, and this was a whole new level of trust. God took care of that, and so many other worries we had with one quick move.

Sleep was now a commodity I had no desire for, but could somewhat easily obtain. We did still have 2 year old, now a confused, traumatized child, who needed cuddling now more than ever. She spent many years in our bed or on our floor, needing the close companionship for her security. Bedtimes became a bit of a challenge, as she didn’t understand, nor could we fully explain how sometimes you just don’t wake up. I think she had & still has fear from that, and that’s something I cannot fix.

For months after his passing, I would wake up at his 4:30 “Roll me over, mom!” time & feel lost & empty, grieving the what-if’s. It took a long, long time to break that unconscious habit. Now a good night’s sleep can be found most nights, but still, it’s a bit of a guilty pleasure. Grief changes you in many small, incomprehensible and unpredictable ways. It’s different for everyone and you can’t fathom how it will be before it happens. My prayer is that you can find the peace I find in Christ, the giver of all good things… including a good night’s sleep.

Clean living and potty talk! 28 Days of Cayden, Day 21

Cayden needed full support to sit. & that meant everywhere. Can you think of places I haven’t mentioned yet that sitting might be a challenge?

For those not in the realm of Special needs kids, there are special things for EVERYTHING! the ones you don’t even think about are often the hardest. Bathtime, toilet time, bedtime.

duck tubYes, we had a special devices for bathing. I had a super find of a blow-up baby bath tub that fit right into the big tub. It was soft, had a high back & actually worked very well for our floppy kid. Until his legs got too long.

Once he outgrew that, it became something else to research and learn, and unfortunately I picked (or was steered) wrong on this one. We got the Manatee bath chair, which was a fully adjustable fully supportive bathing seat. It had straps, lateral supports, a tilt-able back & leg supports, and  adjustable height legs.

The main problems with this chair was that you had to fill the tub super high in order to cover his body when he was in the chair. And you still had to kneel or get down to bathe him. And it took almost the whole length of the tub. This wasn’t a big problem, but he was 3 and his sister was 1 and we usually tried to bathe them together so they could play. She didn’t have a lot of room.

Manatee

C in his bath chair. He really enjoyed playing in the water or swimming.

This chair also had other major issues… when it got wet it was very difficult to adjust. Yes, you read that correctly. A bath chair, didn’t work properly when wet. I actually had to bring this chair to the distributor to have them try to adjust it for us, and they had a hard time, acknowledging that it was a poor design. But did that matter? NO! because just like a wheelchair, the timeline you have to get a new piece of DME of the same category is 3-5 years. So we were stuck with a poorly designed, hardly adjustable, but supposed to be adjustable bath chair for 3 years. And the material it was made of, had a tendency to get smelly if left to dry. HMMM… it gets wet almost daily. It smelled a lot. I washed the fabric, but it was so hard to put on and off, it didn’t happen very often. Just a rookie mistake on this one folks! If you are in the market for a bath chair, I truly don’t recommend the Manatee!

DSCF0855There are other better chairs out there, and we were looking. Some suggestions:  Go for low profile if you want your child to stay warm. Plastic ‘fabric’ that will not hold moisture or smells. Easy to adjust, even when wet. No leg supports if you want another child in the tub at the same time. Shower chairs are smaller, but they don’t allow the child to stay warm, and Cayden really didn’t like the shower sensation on his body, so it was out for us. The kids are higher, so easier to wash, but seems a little unsafe in the end. Personal preference, of course, but just don’t let yourself be taken by that lovely blue (expensive) fabric chair!

high back toilet seat

I don’t have a picture of C in the potty chair (some things I guess you just don’t take photos of!) but this is the one we had.

We also had a specialized toilet chair. This one took me months of looking, and months of proving that indeed, Cayden was capable of learning to toilet on his own, in order to get it approved through funding and insurance. We discovered a Rifton potty chair. I liked this device. It had a variety of options for use including: clip onto the toilet, on it’s own with a catch bucket, as a full unit rolled over the toilet, or just as a step. We had the fully loaded model, of course, tilting high back, straps, seat belt, laterals, armrests, foot rest, tray. Yes, they even make an activity tray for the toilet seat. & we had it because of C’s need to push with his arms gave him stability in sitting (& doing those toilet duties).

over toilet seat

The seat could also sit over the toilet to use, and the small part of the chair with back could just clip on by itself with out the stand.

Cayden was actually making progress in this area. It was a challenge, yes, because of his constipation and digestive issues. Often he had a hard time getting the job done. But he was starting to indicate when he was ready to try & was making good steps towards being trained. That was a big deal! He hated being diapered & really wanted to be independent in that area. The work on transferring was paying off, and we were beginning to see positive outcomes!

The thing most people don’t think about is this: these were excellent devices for using at home. But what happens when you travel? or go to the hospital? How do you give your child a bath, or help them use the toilet? Do you take all this stuff with you? As much as things are foldable or portable, there is still too much to take on a trip. Along with the necessities like the wheelchair, the bed positioning pillow, the nebulizer, diapers, wipes, meds, etc. Packing was a pain!  So you just usually tried not to go places because inevitably you would forget something important, the kid would get sick, and end up needing to go to a doctor. Sigh. Just not worth the effort.

We didn’t often get away for fun with Cayden, we did enough driving to doctors, therapists & hospitals that fun was a weekend staying home. I drove all the time and packed for the day usually, for at least Cayden, and then Skylar too. We would sometimes stay with friends on our trips to Raleigh, which called for an overnight, but a pack & play and a stroller worked okay back then. The older Cayden got and the more gear he had, the less we seemed to get out.

But really, staying home, then and now, is a blessing. We spend so much time, running from thing to thing that it is difficult to just be calm and sit. Our society is so go-go-go that a day of rest is really hard to come by. Jesus gives us the answer in Matthew 11:28-30, as he is talking to the public.

“Are you tired? Worn out? Burned out on religion? Come to me. Get away with me and you’ll recover your life. I’ll show you how to take a real rest. Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won’t lay anything heavy or ill-fitting on you. Keep company with me and you’ll learn to live freely and lightly.”

We can learn much from his words, as we realize that true rest only comes when we walk with Christ, rest in Him, and live in His company daily. He teaches us what is important and what should be released. What we need to stress about, and what we need to let Him conquer. So much of Cayden’s life was out of our control, so we learned that we needed to rest in Him, for Cayden, and trust that His plan was great, and it would be for good. We learned that little things are what matter, the cuddling, the reading, the playing together. And we learned to lay our cares on Him. I hope you too can find the real rest that Jesus brings, because we know that while the kids are young, sleep is hard to come by.

Shira

 

More about sleep (or our lack thereof) tomorrow.

 

 

Riding on the wings of the wind… 28 Days of Cayden, Day 20

C @ party

A good picture of Cayden in the red chair.

Cayden’s first wheelchair didn’t last very long. After we had been using it for a short time, I realized just what a blessing it was, and saw the true need for a well-fitting wheelchair. This bargain one was fine for the time being, but it was not ideal in several ways. After some time we did get approved for one specially fitted for him. It was very similar to the one we got on e-bay, but with a few small differences. We saw the need for full armrests, rather than the round swing away ones on the red chair. We also needed a tray for activities and eating. Better positioned brakes, to lock the chair down more easily (the red chair had individual brakes on each wheel, the new chair had one bar brake in the center of the back which would lock both wheels with a step of the foot.) It also had a quick release seat belt & chest strap, gently curved lateral supports & swing away foot rests.

C July 4

The new blue chair fit him better & was better suited to our needs.

I added on a single bar push feature, since I needed to be able to maneuver him with one hand, while pushing a stroller or holding Skylar’s hand with the other. We also ordered a folding canopy to keep him out of the sun. The new chair was equipped for the ezlock system for future use on the school bus or an adapted van. This would allow him to ride well supported in his locked down wheelchair, rather than needing to transfer him from chair to carseat, put the wheelchair in the back of the van, and repeat, several times a day.

The other features of the new blue wheelchair were a good tilt-in-space, lateral supports, nice curved head support (after the ordeal with the activity chair headrest, this was one feature I was quite particular about). Cayden picked a lovely royal blue color for the frame, and it had his name embroidered on the seat. It also had pneumatic back wheels for a more comfortable ride & anti-tilt safety features. This Quickie Zippie should have lasted for at least 3-5 years.

We did really like the new wheelchair & so did Cayden. He enjoyed sitting in it and never really complained about it. We used it for most things, eating, school, playing, shopping. It was so natural for me to rock & push him around; he went everywhere with me. When he passed, it really was a longing in my body, to have that chair to push. I actually kept his chair around the house for quite a while after he died, because I needed to see it, to push it, to rock it, to feel Cayden’s memory close to me & to gradually ease out of the habit of always having him at my side.

After we got his custom chair, we really enjoyed it. It was definitely well suited for him. But still, Cayden’s quick progress made it clear that he might be able to learn to use a power wheelchair. Once again, it was a case of us saying “Yes, he can!” while the therapists & teachers said “No, he can’t.”

In order for a child or adult to qualify for funding for a power wheelchair they have a list of qualifying factors that must be passed. These include the ability to stop and start on command. The ability to steer accurately. The ability to see where they are going, completing an obstacle course of sorts. The motor skills to steer the chair using some form of steering device: joystick, head tilt switch, 2-3 switches (for stop/start/turn). Cayden had several of these mastered but he still had to work on a few more. We practiced stop & start, green light/red light. We practiced with switches, driving his remote control cars with his SuperTalker. We tried head-tilt switches (a complete failure, this made no sense to him because of his poor head control, he would hit it randomly & we could not be sure he meant to do it.)

The problem was that I saw his desire to be more free. To have more independence as any typically developing 3 year old would want. And he was always at my side. He couldn’t run to the other room to grab a book. I had to see his need, interpret his desire & get it for him, then sit with him and read it to him, turning the pages with him. If I was busy cooking or cleaning or doing something else, he had to wait. I could see this was beginning to frustrate him.

I also could see from his cognitive progress that the ability to drive the power chair was there. But it would take a while for him to learn it, because of his poor brain-motor pathways. But until he learned it, he would not be able to even demo a power chair. Quite the Catch 22, isn’t it? I didn’t like this idea, because I felt that given the proper time and space to practice, he would be able to learn to manipulate the controls to be independent, that his desire would push through the difficulty and make it work.

DSCF1376So what did we do? Can you guess by now? …. Yup, I spent some time on e-bay. ; )  I think I actually found the power chair for C on the special needs exchange website. (not sure it exists anymore, but it was a great group to buy/sell/trade equipment that kids have outgrown). We found a used power chair a few states away at a cost that we felt was more than fair, & decided to go for it. Joey took a road trip one weekend & brought it home.

This chair was not as perfect a fit as the red chair, we knew that. But we are both crafty people & we worked on it, adapted it some and made it work, more-or-less for the time being. It was a trial, to see if we could make it work, and to see if our guess was correct that Cayden had the desire and ability to drive it safely. (We always felt our purchases were well worth it, knowing we could sell them again someday, if they didn’t work).

Power-wheels!

C trying out his new power chair. It was late when Daddy arrived home with it, but he had to try it out!

 

If you think the smiles on Cayden’s face from the first wheelchair were big, take a look at these! This was his first taste of freedom, of feeling the wind in his hair, of moving on his own desire and control. We threw a chest strap on the chair, strapped him in & let him ride. He LOVED it!

This was a great night. He was driving like a little whirling dervish, all over the place, no real direction, just enjoying making it GO! (remember that was one of his favorite words!) & trying to teach this boy to STOP!>>> well, that was not really happening. He had had enough of sitting still, waiting on someone else to move him. He wanted to GO!

This chair was a little big for him, and much too heavy to lift in and out of the van, so it was a stay-at-home, learn-to-drive-it-outside chair for a while. We needed to work on direction, aim and control before it came in the house, or before he was allowed out in public with it. I was afraid he would take off someone’s toe! This chair was HEAVY!

I also needed a way to make the steering work with his arms. He couldn’t really grasp this ball-shaped joystick, so I experimented with a variety of different options. Tennis ball, straight stick. Left Hand, Right hand. Finally I made a T-bar out of pvc pipe that worked really well for him. This was the way he was going to drive.

We got this chair for him in August 2007. Like I said earlier, we got his ECO in October 2007. So I put the power chair learning on the back burner for a bit, while we worked to get him communicating. Plus, it was getting cold, so the driveway was not a great place to practice, with his tendency to get sick. I was trying to find a place to leave the chair (like a school or church) where we could go and practice in the warmth, but hadn’t solved that problem before he died. We did do more work on it in the following months, but I am not able to find any more still pictures of his progress. (I was too busy helping him stay on the driveway!) I do have a great video of him driving the chair in January, that shows his progress & how close he was to being able to go for his evaluation.

I was actually contemplating bringing the chair inside very soon, when Cayden died. I felt he was almost ready to start learning the more subtle steering it would take in the house. The new T-bar steering method really  helped him control the chair in smaller movements (rather than a hurkey-jerkey: go fast & stop, go FAST & stop, he had with the ball).

These memories are so bittersweet to me. I see and remember just how far he had come, and how much progress he was making those last few month. He was progressing so well in so many areas & our hopes & spirits were so high. That made his sudden death all the more tragic to me, and I spent the first few months thinking about what he would be doing now, how great he would be driving, or talking, or listening with all of his technology.

Maybe technically this lame child never did fully walk. But he certainly felt the wind in his hair, of his own accord. He saw this chair and fully understood what it meant for his future. One day I was reading my bible, trying to find some peace with missing my precious son. I read these words in Psalm 104 & felt that they were mean to tell me that Cayden (the He) was okay, & it gave me peace. I will close with this, and encourage you to picture his golden curls, shining in the heavenly sonlight, with a smile from ear to ear, as he rides on the wings of the wind.

Shira

Psalm 104: 1-4

Praise the Lord, my soul.

O Lord my God, you are very great;
    you are clothed with splendor and majesty.

He wraps himself in light as with a garment;
    he stretches out the heavens like a tent
    and lays the beams of his upper chambers on their waters.
He makes the clouds his chariot
    and rides on the wings of the wind.

He makes winds his messengers,
    flames of fire his servants.

 

When Skylar was little, she used to ask us where Cayden was. We just told her, “He is in the clouds in Heaven.” This eased her 2 year old heart. She then would tell us sometimes she saw him up in the sky. So together we would imagine him up there, sitting on the edge of the clouds, just kicking his feet like kids do, watching us & saying hello. We still send him balloons every birthday, & watch until he snags them up to heaven.

Don’t judge a kid by his wheelchair! 28 Days of Cayden, Day 19

Getting a wheelchair is somewhat of a major step to take. It is saying to the public, “Yes, my child is handicapped. Yes, my child is different.” It also feels like you might be saying, “I am giving up on the hope that my child will walk.” It is a hard hard step to take, and a hard hard choice to make.

We had hopes that Cayden would be able to walk. His leg strength seemed to be there, but his body was so floppy the hopes began to fade away the older he got. And the sitting challenges became harder the taller he grew, so it became necessary to take that final difficult step. Yes, we needed a wheelchair.

C's red chair

This was the night we got his first wheelchair. I thought we did a pretty good job sizing it from e-bay!.

Because we had originally gotten the activity chair when Cayden was 2, we were ‘supposed’ to wait until he was around 5 for the wheelchair. (Insurance usually won’t buy a second seating device within 3 years). But by age 3, we saw that it was not going to be possible to wait that long. The double stroller wasn’t working anymore because his legs were just too long. The sit & stand wasn’t a good option for him because he didn’t fit. I needed something that he was secure in and was tall enough for his long legs.

I have said before that surfing the special needs websites like vendor sites and, http://www.adaptivemall.com became a bit of a habit for me. I would just spend time looking around, familiarizing myself with the different devices and equipment, and think about ways to try to make it myself or to make it work for us. If I found things I liked, I was known to spend some quality time on ebay, looking for a used version or similar product, saving searches & trying to find a bargain.

That is where Cayden’s first wheelchair came from. I admit, this is an unconventional way to get a child’s wheelchair, but we were feeling desperate. A good deal came up, it seemed to be a good size, and it was under $100. We grabbed it up.

C new chair

Giddy guy! Squealing with delight.

The day the wheelchair came was so exciting. Cayden couldn’t wait for us to put it together & try to figure out how to make it fit him. Joey is very mechanically inclined so we didn’t really have a problem setting it up. And thankfully, it fit Cayden perfectly. You can see from the pictures, he was so excited! He was just laughing and giggling. All over a used wheelchair.

His giddy response made us realize that the issue we had as adults with the wheelchair and what it symbolized to the world was not an issue for Cayden. He didn’t care what it meant or what it said to the world. He felt secure. He felt safe. He was comfortable and sitting properly for the first time in a long while.

new wheels!

People often make quick judgements based on appearance, or what things seem to be. Not just adults, but kids easily do it as well. We could see how people looked at Cayden and would feel pity, or sorrow or maybe disgust, but what Cayden always gave back was joy, peace and love. He was an open book, a mostly happy, smart, interactive kid, who was a joy to be around.

Lake N

A simple clip on umbrella made a great sunshade for photophobic Cayden, during a day at the lake.

I never minded when strangers or friends would ask me “What’s wrong with him?” or “Why is he in a wheelchair?” at least they were brave enough to ask and learn a little about him. What drove me nuts was when people would just look & stare and wonder, but not ask, and not say hi to him. Just obviously look & talk about him, three tables over. I urge you to remember (and to teach your children) that many kids in wheelchairs can think and talk just like you and I. They can say hi and respond back in their way, and to greet them with a smile and a “How are you?” will make their day (rather than stare, a point and a whisper). They thrive on interaction and want to be acknowledged as much as you would.

Matthew 7: 1-2 (NIV)

Jesus says

“Do not judge, or you too will be judged. For in the same way you judge others, you will be judged, and with the measure you use, it will be measured to you.”

Don’t judge a book by it’s cover is the common phrase we use today.

Judging others without knowledge can cause undeniable pain. It brings misunderstanding, pain and possibly ruined relationships. Jesus warned us to not judge, or jump to conclusions, because it will most likely come back to haunt us later. It’s so hard to make the choice to put your child in a wheelchair, not only because it can feel like there is a lack of hope, but because you don’t want your child to face the inevitable judgement our society so freely hands out.

Family HikingI still feel judged sometimes. I feel like people look at our ‘perfect’ one boy, one girl family and think “Oh, how nice. 2 cute kids, a mini van, and a yellow lab. What a perfect family.” But what they don’t see from the outside is the hole in my heart from missing and grieving my first born child. They don’t see how some days I think what our family would be like if Cayden had been typical. We’d be doing soccer and scouts with him, he’d be going into 6th grade, and I’d have my 3 stairstep blond kids all around me. Or even better, if he were just him, broken and beautiful and driving all over in his fabulous power chair, talking like crazy to his siblings on his ECO-13.

Instead, I have a partially broken heart, a few hundred pictures, and slowly fading memories of a boy born with a malformed brain, a fighting spirit, and a disabled body that needed a whole lot of equipment just to be safe.

Everyone has a hidden burden. Don’t judge. Some burdens are more obvious than others. But the burden of missing a handicapped child is far worse than the blessing it is to love and to raise them.

Shira

 

Stand up! Stand up! 28 Days of Cayden, Day 17

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!

C baby stander

C’s first baby stander. He did not enjoy the experience at all. Can you tell?

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!)

C baby stander back

NASCAR on TV didn’t even get him to lift his head!

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.

C in rocket with Bethany

The rocket stander was easy to use and much more comfortable for Cayden. The tilt feature allowed us to slowly increase his weight bearing as his head and torso strength improved. You can see here he is somewhat tilted back so it is not so hard for him.

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.

C stander with no tray

The tray allowed C to use his arms and hands to help keep his head up. Without the tray in place, and at a complete vertical, this is what he did. No tone whatsoever in his neck. Without a strap on his chest, he would collapse into a puddle.

C drawing

One of my favorite pictures of Cayden, my artist!

 

 

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.

Jingle bellsThis 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.

rifton_supine_stander_main-wm

The torture device!

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.

mobile stander

The Rifton Mobile Stander was on my short list for a new stander.

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.

EZ Stand

The EZ-Stand could allow the child to be placed in the chair sitting, get strapped in, then rise to standing either with a manual or electronic crank. Then he could go back to sitting to get out.

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.

Shira

Tomorrow, more equipment stories to share!