Friday, August 19, 2016

Checking it off!

I had a huge checklist to accomplish a few weeks ago and I am checking it all off pretty dang quickly!

We have been having such a fun and busy summer that I just realized I needed to get a lot done all before school started! I am killing it and feel so much less stressed out now!

His neurologist is STILL on sabbatical and I mean this has been going on for years now. I am annoyed now. Thankfully he doesn't need botox nor is he in dire need of seeing a neurologist. I went through 3 neurologists before staying with her for the last 8 years so I am not really interested in finding another.

So therefor I had to go onto plan B!

I really needed a new scripot for his SMO's (ankle braces) since they are constantly marking up his feet so I had to try and book an appointment with his orthopedic. I also needed a signature for the awesome wheelchair power adapter (Max Mobility) I want to order. However his ortho was booking months out. Somehow I totally lucked out and got an appointment for the very next day although it was with a totally random doctor! We got to get all his X Rays that I needed for Texas (for yet another surgery he needs) and we got a new SMO script PLUS the doctor signed the form so I can try and order the Max Mobility through his insurance. I was and still am so super excited to check all that off my list!

So we got the script but that is just half the battle. He needs to get casted for them. I was able to get booked for the very next week, SCORE! We just got the casts done this past Friday and we also threw in a dentist appointment that morning!!! He was fantastic and chose black for the color (thank goodness he didn't want kittens playing with yarn balls this time) which they do not make but this really cool new orthotic now works there and is going to try and see what she can do. I just do not understand why the patterns have not changed over the last 10 years. I am sick of space, batman and some blue design.


I hate making phone calls but I made myself call his mobolity company to find out how AND if I can order the Max Mobility and found out eveything I need to do. I have to wait for school to start because he needs his physical therapist involved but I now know what needs to be done and will get that ball rolling in a few weeks.

I am pretty sure he needs a bigger walker for school (but honestly I forget what size he has at school since it never comes home, they even transport it to Summer school) so I need to check into that once school begins and see if insurance will also cover one. I know they do not like to cover mutiple mobility pieces in one year so we may get denied. Max Mobility is around $6,000 vs Walker $1200 so guess which one I want insurance to cover?!
We have been buying walkers for the last few years so I am really hoping they will cover this one. The new crocodile costs over $1000!! We leave one at school because they were getting ruined being transported back and forth daily. I will say the new design on the crocodile is extremely cool looking and built to last! I love how it folds and locks now. Just this year he has moved up from the size 2 to the size 3! We have moved on from orange to black! I have always been a fan of the croc and still am. We tried the Nimbo but Brendan HATES it so it is just taking up space in his closet right now. The price difference is monumental so kind of bummed he doesn't like it AT ALL!


I am pretty sure I ever have a to do list completely checked off. I think daily things pop up!!!!

So now I just need to send out the packet to Dr. Yngve in Texas (which I filled out already) because he needs SPML (another tendon release) which is pretty common after SDR especially at his age and having a major growth spurt. I also want to see if they can release his right arm in hopes it will help him gain some more mobility and be able to use quad canes more efficiently. I need to call the hospital file room and get his x rays mailed to Dr. Yngve and then they call me to set up a phone interview. We will hopefully fly out for an evaulation and have the surgery the next day and then come home soon after.

I think that is everything I needed to accomplish. There is always something to do for this child! I don't even know what life will be like when he is an adult. I don't think I will ever stop helping him and researching and probably taking him to appointments or bringing him dinner. Life will be different but most likely less chaotic, especially with 5 kids to be involved with.

Summer FLEW by and I seriously need to do some school shopping for these kids. See..... my to do list is NEVER done!





3 comments:

Sheila said...

You are an amazing Mom, Steph! I don't know how you do all that you do with 5 kids! I have all I can do to manage Malayna's needs! You will continue to check things off your list and new things will always be added but you will always do what you need to do. You've got this!

Tiverton Tots said...

Thanks Sheila! I am so excited to have it checked off and I am sending out his packet to Texas tomorrow! I also emailed with his teacher tonight about getting everything set to send out to insurance for his max mobility! I am feeling pretty good right now.

Tiverton Tots said...

Thanks Sheila! I am so excited to have it checked off and I am sending out his packet to Texas tomorrow! I also emailed with his teacher tonight about getting everything set to send out to insurance for his max mobility! I am feeling pretty good right now.