Jamie's new ghetto therapy bike

Check this out, we used a new Razor "Rip-rider 360" tricycle for Jamie's new therapy bike. I added a 8' piece of 1/2" conduit for a handle and locked the steering with a couple of screws... We wire his feet to the pedals and get lots of smiles around the neighborhood.

Special Needs Double Stroller

Check out our new "GSV1" or better known as the "Ghetto Stroller".  

We added a tree-swing from wall mart to Jamies Convaid Scout Special Needs Stroller to allow us to be able to get around with both kids in 1 stroller and for my wife to be able to take walks. My wife could not go anywhere with the baby and Jamie (at least nowhere they had to walk very far), and we couldn't find a suitable double stroller for 1 child with special needs and a baby, or a stroller that could accomodate Jamie (70lbs) and the baby (20lbs) at the same time.

The entire conversion was about $60 bucks and included the following:

• Tub-Style tree swing
• We used D-Clips and Climber clips to hang the stroller from the handlebars but I might have rather used the dclips on the top and eye hooks in the swing
• A piece of metal to go from the bottom of the tree-swing to the "X" bolt on the stroller
• A thin piece of steel to go under the tree swing for the metal to bolt to.  This was overkill as a couple of washers top and bottom would be fine
• An old high chair with a 5-point harness or seat belt. We just cut slits in the tree-swing for the top 4 points and used the same bolt in the bottom to grab the crotch strap
• A bike training "handle" that you can find at wall mart to extend the handlebars.  If you are lucky, it fits right into the old handle bar holes. We heated and bent the bars using a simple $10 torch a electrical conduit pipe bender.

The biggest issue is that baby cannot be in the stroller without Jamie as it would tip. Not a big issue unless we are alone taking him to the bathroom.  Drop a comment for help converting your stroller.

 

Jamie Walks By Himself for the First Time

Jamie trying out the interactive metranome

I sure was disappointed that I couldn't be there but I am hearing that he did great!

Almost 1 minute by himself and he had a great time!

Jamie Wears a BiPap Mask for His Obstuctive and Central Sleep Apnea Disorders

Hi. My son Jamie has CP due to birth defects and complications during pregnancy. He was born in 2002 and we went through all of the fun stuff 1st time parents of a special needs child get to go through: slowly realizing the severity of his delay, tests for super scary disorders that take weeks to get results for, near death experiences from things as common as a cold, month long stays in the hospital, etc... etc....

His dr. finally prescribed the use of a BiPap machine, alot like a cpap machine only it varies the pressures with his breathing, for him to wear while sleeping when he was about three years old. Before I go into how we got him to accept the machine I wanted to give you a bit of history...

Our drs prescribed the machine after a sleep study showed that he suffered from 2 common types of sleep disorders; central and obstructive sleep apnea. He would snore, (obstructive), and breath very lightly, approx. 8 breaths a minute, (central), that you could hear or feel. The sleep center did not test him with the machine. It was only after our meeting with the dr. to review the sleep study findings that the machine was prescribed and about two weeks later the home health care worker dropped the machine off pre-set to the drs recommended settings.

Jamie has had problems with very heavy mucus and is just kind of a "thick" guy. We had all of the chest congestion and "lack of coughing" issues that I suppose most low tone kids deal with. We can only assume that it was this congestion in his lungs coupled with athsma and the high bipap settings: approx. 16 over 8 with a backup rate of 20, that caused his left lung to collapse after a few months on the machine.

In the hospital once the chest tubes had done their job it was time to go back on the bipap again. I believed that the machine would help I just questioned the pressures. I had tried the machine on myself and found the pressures to be enough to pop my ears. I am not a big guy but it just seemed high to me and if it felt uncomfortable to me what does it feel like to a 35lbs kid?

I pleaded with anyone that would listen that I wanted to experiment with pressures. I had read where it is common practice for home health care workers to observe a child on a machine and adjust as necessary for comfort. The machine caused him to gnash his teeth and just seem very uncomfortable. The low MV alarm would go off constantly, (set at 2), and listening to him with a stethoscope, he had better breath sounds without the machine than with. This can't be right.

The drs finally gave in and gave me a prescription to manage the pressures under direction of a respiratory therapist.

The first night the therapist and I started him at the very lowest settings on the machine. I think was around 4 over 2 with a backup of 16. Jamie was pulling around 8 breaths a minute by himself so we thought to double that to create a rhythm between him and the machine. The low MV alarm still was going off but he really sounded better and slept well all night.

The next night we began to inch the settings higher. Just through observation and listening with a stethoscope he seemed to go best between 8 and 10 on the top and I think the general rule of thumb is to separate the high and low numbers by around 4-6. We eventually increased his backup rate to 18 also. The dr wanted over 20 but the machine just seemed to be hammering away at him rather than working with him.

Jamie's CO2 was quite high even when he was awake and the blood-gas tests are hard to do first thing when he wakes up. Not a fun way to start your day I am sure.

There is so much more to talk about... more later.

Jamie Gets Heel Cord Surgery at 5 Years Old

Jamie had very tight heel cords which caused his feet to pronate outwards forcing him to walk on the insides of his ankles. This not only look uncomfortable it made it impossible for him to balance as he could not "grab" the floor with his toes.

The little guy's knees were pressed tightly together and he could not walk barefooted with or without assistance. Braces were a nightmare as his "beefy" stature and the severity of his pronating made them very uncomfortable. Red spots would have been welcome, we had to deal with blisters and skin breakdown if he walked for any distance at all.

We finally found help at the Shriner's Children's hospital in Tampa Florida. They prescribed a surgery that would basically cut slits into Jamie's heel cords then cast his feet into fiberglass casts and then move on to fixed braces and finally into hinged braces which he will most likely wear for life.

It was really a miracle. Jamie did very well in recovery. We asked that we be allowed to place him on his bipap machine as he came out of the anesthesia which helped alot in recovery and he is now out of his casts and looks amazing. His knees do not touch and he stands in a much more straight and normal way. Knees bent, feet forward.

The man that helped us with the braces was a genius. I can find his name if you email me but I don't recall... He worked at the Tampa Shriners as a "brace" dude and wore braces himself.

We have begun to loosen the top strap to allow his ankles to bend a bit and he can really cruise on the treadmill. Thank you Shriners!

He can go at around 1mph for almost 20 mins easily now or once around Wall Mart with our elbows out.

Learning About Jamie's BiPap Machine

One of the first things we did with the machine was to hang out with just the mask on, no hose, etc... very loosely in front of his favorite movie at the time, I think baby einstien's baby moves. He of course hated it but the movie just mezmorized him completely and with a little coaching he would wear it for a few minutes before pulling it off which we let him do.

This allowed us to fit the headgear and get used to putting it on and taking it off. He thought it was funny when we put it on ourselves and we tried it on squishy poo doll and his baby too.

Our next effort was to put it on him in at bedtime with the hose and machine attached. Not too much fun to report here. We learned that you should put the mask on first with the hose attached, THEN turn the machine on. We felt completely stupid and probably scared the heck out of him those first few nights. I know now that a home health care worker should have and would have assisted us if we had pressed the issue. It would have helped some but probably not the stress levels any.

We must have read his Dr. Seuss books a jillion times those first few weeks. I can recite all of 1 fish 2 fish by heart. One of us would read while the other would gently control his hands and rub his back... This was not a smooth job. Our machine was set so high and it was leaking and he was very upset. We would try until it became too traumatic and give up and try again the next night. For the first week it was not uncommon to read to him for several hours before he would finally fall asleep or we would give up.

On those first nights of wearing the bipap machine that he did fall asleep, he rarely would make it through the night. The mask seemed to leak constantly and I was very clumsy at fixing it.

Some things that helped the leaky mask were; finding one that fit... This was the hardest part. We were lucky in that our home health care worker left us with several styles to try and the Soft Series Repironics mask (above) fit the best. The fancy ones were just too clunky and squishy and really too big. The trick with the Soft Series was to soak it in hot water and vinegar several times to soften it up as well as getting the headgear and the brow guard or the thing that changes the angle of the mask by pressing against his forehead correct. Mine was set too high. This was corrected by cutting away the material just a bit at a time until it stopped leaking around his eyes. Too low and it will dig a groove into his forehead. You can use soft medical tape to build it back up also if you cut it too much.

Jamie has a very wide nose and the wide model of this mask barely avoids pinching his nostrils on the sides. I use a black magic marker to mark off just a bit on either side and the bottom, then slide a piece of stiff cardboard into the nose hole and trim with a razor blade. At $50 bucks plus a shot I learned the hard way to be very careful. Over trimming did not completely destroy my mask but it was a bit more prone to sliding around his face. I keep old masks handy just in case. I have had them fail and it sucks trying to find a backup in the dark.

The mask when it fits right looks like if it just slides a little bit it will cover his nostrils. This seemed crazy to me at first and I trimmed the bottom quite a bit. Truth is though that the snugness of the soft part of the mask is what keeps it from sliding up. I still feel better trimming the bottom just a bit.

Mastering the settings on the machine and dropping the pressures way down would have made this whole process much easier for us but we had to endure at the very high settings the dr. had prescribed. We assumed that we were not allowed to change the settings. Stupid us.

On our Resmed BiPap machine, you press two buttons simultaneously then scroll down to the bottom of one of the menus and exit out ... good grief, let me go look.

It is a bit tricky to change the settings on our machine:

1. you press the green and red button at the same time and hold
2. scroll down to "efficacy data"
3. exit once, then twice and you should be presented with the "clinical" menu
4. press enter
5. select settings and press enter again
6. scroll up and down
   

You now can change the primary settings of the machine. Tread very lightly! The only settings I have ever dared to fiddle with are the trigger (set to high), IPAP, EPAP and backup rate. The dr. has recommended some changes to the rise time and I think I met her in the middle.

Jamie's settings are something like IPAP 10.4 and EPAP of 4.6 with a backup rate around 18. I can push him as high as 12.5 before it just completely blows past his mouth but I can not detect any improvement in breath sounds and he acts uncomfortable and is tired the next day.

I like his respiratory therapist allot, her name is Janice.

Therapeutic Horse Riding at Three Years Old

When Jamie turned three we couldn't wait to start riding horses. We had heard so much about how the program had helped other children and it just sounded fun. It is! It is the highlight of our week.

The program he is involved in is very complete and staffed by many wonderful volunteers. Jamie is learning to hold the reins, carry objects , open mailboxes, and many other wonderful OT activities.

There are of course tremendous PT benefits as well. The horse seems to loosen him up better than any other activity we do and his balance and core strength have improved noticeably.

I enjoy side-walking with him and helping them with their website when I can as well. If you have a program in your area we highly recommend getting involved.

Some tricks we have:

• When it is hot we cover Jamie's head with a damp or wet rag
• For Jamie's allergies we change clothes right away when we get home and wash our hands
• Spend lots of time talking about horses, toy horses, what the horse says, "walk on" and "woa" to go and stop
• Lots of water before and after
• Easy on the snacks before
• A bit of hot coffee and/or albuterol before to help his energy and to help him cough
• I learned to be a sidewalker (It's easy and he hasn't hit the dirt yet)