Wednesday, October 1, 2008

What's On Our Plate

To give you a little clue as to what is on our plate-

So far this week, we've had a neurologist appointment. Went really well and we have graduated from going to see him 4 times a year to only 2 times. He even made the comment that he believes Daniel will walk and of course potty trained! (if only I can get someone to do that part for me!)

We also had our orthopedic appointment. The doctor felt Daniel's hips and legs, said his range of motion is great, he wasn't tight or anything (YIPEE!) and that this next year is crucial for Daniel, this will be the year that will decide if he'll be able to get his upper body to talk to his lower body and get his trunk strong enough for walking. So no x-rays were needed, and by the way his spine checked out fine too!! We have to go back in 9 months because during the 3-4 yrs of age there is generally a large growth spurt. Large growth spurts mean bones grow faster than the muscles, which result in tightness. SO STRETCHES we will be doing ALL the time.

We also still have preschool 5 days a week. Meaning Daniel is getting his social interaction but also that he is generally in the seated position for 3 hours straight. This means shortening of the muscles (hamstrings and such), which can lead to tightness and difficulty getting those muscles to cooperate. Meaning...STRETCHES!! Daniel seems to love preschool (I am so happy, it was so difficult in the beginning!) we have 2 field trips that he will be going on this month (he will be taking a bus....YIKES!) One of the field trips we get to go on, the other one is just for students and no parents. It is a Halloween party that the Elks club is throwing for the special needs children. I'm a little nervous about this as Daniel gets flipped out easily with people in costumes or things flying (ghosts) and stuff.

Next on the big plate is ABR. I cannot express how excited I am to be going to Montreal for this. Nervous, excited, stomach ache, the whole thing. There is a lot of planning to do in the next 18 days. Still trying to find a cheap hotel, but one acceptable with a kitchenette so I can make dinners and save money. Hope (every cross your fingers) that gas prices stay low (ha ha ha $3.65 is low...remember when it was like $2.00?) because what we save on gas during the trip can go to the hotel or food allotment! We are juggling allot of things to be able to go, and Lonnie sold all of his guitars....(thank you). I just see wonderful things coming from this experience. I am excited to go...we have never been to Montreal so it should be nice, I am hoping we are by some parks and stuff so we can go walking to spend some of our free time.

The day we get back will be Victoria's homecoming dance. So I have to make sure we are back in time to help her get ready. We also have to find a dress!! how fun does that sound?!?! (Have I said before I hate shopping?) Remember when we went to dances and you just wore something nice like no jeans with holes in them and a nice top?!) Heck no, not you have to get the nice dress, get your hair done, nails & oh yeah according to Tori you have to go tanning too so you don't glow in the dark from the whiteness of her skin. (the kid has a tan from the summer which only ended a couple weeks ago!)

We are also in the process of getting Daniel fitted for his manual wheelchair. This in itself on someones plate is enough for a double serving of a huge headache! When you pick one of these out you have to have all these answers and if you're not really familiar with wheelchairs it is difficult. It needs to have the big wheels so we can teach Daniel to be able to propel himself (hopefully) one day, it also needs to have the handles so we can push him if needed. DO we need Tilt-in or no? what type of seating and support is needed? It must be lightweight so that when he is able to move it on his own, it isn't' heavy. Believe it or not some of these bad boys are pretty heavy. Do you want it to be a solid chair or do you want it to be able to fold up (this will limit your choices greatly). We want it to be less chair more Daniel. We want people to notice Daniel not the chair. We don't want the chair to look to medically like, but more just like a seat. I don't think we're asking too much do you?!?!

On top of that Daniel is outgrowing his stander. This is an important piece of equipment although many people don't realize it. This helps with weight bearing and getting the bone density stronger. This is a must. it stretches the legs also. So we are in the process of trying to find a new stander. What people don't realize is that getting new equipment is not an easy thing. You have to time it correctly. Insurances don't like to get bombarded with a bunch of equipment all at the same time. You have to space it out. You have to decide what you want more, send that through insurance and hope for approval, generally we'll take the most expensive thing and try to get insurance to cover that so we can pay for the less expensive out of pocket(still in the thousands of dollars but cheaper area).

Daniel also is trying to get approval for the LiteGait which will really help him with his walking. This is used for many reason and can also be used over a treadmill to help with his exercise.

Next lets move onto his augmentative device which we are waiting for approval on. The prentke romich Eco-14. This little doodad will give Daniel his voice. This will allow Daniel to be able to tell us what he wants, what he is feeling, it will allow him to be heard. I am torn with this one because i can't wait to have him get it and i can learn what is going on in that little head of his. But makes me sad because the voice I will hear will not be unique to Daniel. It will be a voice that another little boy somewhere else has too. I want Daniel's voice. Makes me teary, because i want it to come from his mouth.....OK lets me on before I start crying.

We have ordered (these are fun -NOT), that are not covered by insurance. But are needed and help greatly. Daniel got fitted and we just got last week his SPIO vest (gives great trunk support), and today we ordered from Benik his hand/thumb splints. Now wouldn't you think that when you order these you are getting a set? Nope priced individually. I guess I just thought of them like get two right?!?!? NOPE not with thumb splints!! CA-ching!!! Next we have the 2 button recordable help Daniel with his way to answer yes or no to questions that are asked of him. Do you need to go potty? Do you want a snack? Do you want chocolate pudding? Do you want a drink? Are you ready for a nap? (that ones easy he'll always pick NO)
Ah then we are waiting to see if we get approval for the Vita-mix blender which is needed to start doing Daniel's meals, to get him the nutrients he needs so we don't have to add a feeding tube to our plate. If we don't get approval this will be on our list of things we must purchase without insurance assistance.

Oh yeah and we mustn't forget the 2 times of physical therapy a week, along with the occupational therapy 2 times a week, and speech therapy another 2 days a week. And all the additional therapy that we must do at home....
On top of all this I have a teenage daughter to goes to high school, who doesn't drive, who is very popular and likes to be social, plays sports which has tournaments on the weekends, practices everyday, have 3 games a week, who also works part time at a really cool place that i wish I could escape too.

can't wait for tomorrow ;)


MeghatronsMom said...

Sounds like your plate is full & you already have seconds, thirds & fourths lined up! ZOINKS!

I so hope he can get approved for the lite trainer. Treadmill training is awesome. The place we go to for PT has hit & it is one of the reasons I drive so far to do get that therapy. MM's gait has improved so much & has emerging running skills. I know it is due to the treadmill training, where the brain is finding new pathways to move her legs. I see it working for the other children there too, so I KNOW it will work for Daniel.

{{{HUGS}}} If I could help you clean your plate, I would.

Mamá Terapeuta said...

A piece of advice? Wait until you start ABR to look for new equipment. Your needs could change a lot.