A wedgie...

Last week I saw an email from another parent looking to get rid of some equipment that her daughter no longer needed. A nearly new car-seat, and a wedge for therapy.

We drove an hour north to get the equipment, because combined, it is over $1,000 of equipment and months of waiting for insurance or medicaid to deny or approve!

The car-seat is just the one we have wanted to order, but being $800 and not something that is being approved lately, we were really excited to get it! I washed the cover, and it's drying now. It's bigger than his current seat, and lighter. The current seat is multi-seating device that we will be able to bring into the house for him to have a good place to sit while we try to get him back eating. (Which is a whole other post...why he's stopped eating by mouth.)

The wedge will allow him to lay on his belly while working with his arms. Something that is extremely difficult for him to coordinate. It will also make him work on his neck muscles. All of those actions will strengthen his muscles, allowing him to use them in other situations, like rolling, and sitting up.

Here are a few pictures of his new wedge. When I get him in the carseat, I'll add those pictures.

Here's his first reaction to the wedge...to sleep.




And here's a shot of his poor little socks...this happens at least once a week. Just call him bigfoot.


He eventually woke up and decided he'd try it out.


To encourage him to keep playing, I put his favorite noisy toy down.


(By the way...if anyone ever sees this toy by playskool in a store again, please let me know! It is the best toy for him! One big button to push...and makes lots of noise and spinning.)

After the music stopped, he told me he wanted "more".


So I told him he could start it again, and away he went.


He played for a few more minutes...until is binky made it's way back into his mouth...
then it was game over!


I would like to point out...#1 his fluffy ducky hair. If I could figure out how to keep it at this length always I would! And #2 he is still using a binky...don't know if/when we'll ever get rid of that stinky thing!

Here's the car seat...with Olive!


Off to play. Hope everyone has a great day!

Seizures...

I don't know that there will ever be a time that I get used to seeing Max have a seizure. Even in those early days, when we were in the PICU for months at a time, when he was having upwards of 250 seizures a day. Every single one shot an arrow through me. And I have never been able to shake the feeling of absolute helplessness.

I learned to hold the emotion of it inside. There is a business side of all of this. Without meaning to, I'm sure, they teach you to put the emotions aside and observe. You need to do this to be able to report to the doctor or specialist in case it gets out of control. His life depends upon us observing every little thing...we have to watch...we have to pay attention.

To watch his respiration...is he breathing? Yes...keep his neck elevated and on his side in case/when he vomits.

Document his movements...which way did his eyes go...which arm stiffened or went up in a salute...did his lips quiver or smack...tongue dart or flatten.

How many minutes does it last?

After five we need to get the emergency medicine...

Is he done? Is it over?

I don't know...what do you think?

I think he's okay...I've got his medicine here...there he is...there...he's smiling...

Max...are you back..are you okay?

"Hiiiiiiiiiiiiiiiiiii!!!!!!!"

And.....breathe...and hope for another very long break before that happens again.

~~~~~~~~~~~~~~~~~~~

I'll be calling on Monday to get in for a weight check and dose increase. I could tell by looking at him sleep this evening that he would have one when he woke up. It was eerie really. We were watching tv and he was sleeping hard on his comfy little pallet. We don't ever move him once he's fallen asleep, so we let him stay where he is until he wakes up on his own time. Sometimes that's a few minutes, and sometimes that's a couple of hours. About an hour into his "evening nap", I looked over to check on him and his tone was strange. Not oxygen deprived, (no - I know that look too), not nauseous, or sick either. Just an extremely tired color...hard to explain...I guess I could just call it his seizure coloring.

When the show ended, Olive got up from her perch of my chair. She shook and woke Max with the noise of her tags clanging. Stinking loud Olive. ;)

That's when it started, and ended almost 5 minutes later.

~~~~~~~~~~~~~

I'm in bed with him now.

He's well past the seizure. We've got him all cleaned up and his comfy pallet in the washer on HOT. Steve just came in to tell him goodnight, and told him "tell mommy you love her, and go to sleep.". He told Daddy "I love Dad-Dad."...fair enough.

He's holding his monster's hand now, and dozing off. I just might spend the night in here by him...at least the first little while. Just to make sure he gets back into sleep.

And make sure I get to sleep...just for the first little while.

Meow...

We're are spic and span around here! Everybody..quick...come over so you can see my clean house.

The showing came and went. It was a young guy with his parents, and he said he liked it. We'll see though. What an ordeal...but we want to be accommodating to our landlords. They have so so much on their plates, and hope for all of us it works out.

I also went to the chiropractor today, got all put into place...including my wrist, which at some point I hurt. The doctor pulled on it, and then had to tape it up. I get to wear this ridiculous tape for 36 hours...blagh. I wish you could see how many typos I've had.

Okay...it's snowing slushy thunder snow. And raining some. It's pretty gross weather. I'm okay with snow...and love rain...but slush...not so much.

Okay, that's all for now.

Listen to the rhythm of the falling rain...

I am loving the rain today. It started as a fine mist this morning, and is a steady downpour now! I'm hearing it will turn to snow...but maybe just maybe it will stay rain! I enjoy the sunny days we get too...all 300 of them in the year...but the rain completely restores my energy!

Today has been one of those days that it's been good I've had the calming rain to keep me from going through the phone at people! I called on Max's new talker...yeah...the same one that has been approved since NOVEMBER and we still haven't gotten yet. The vendor went round and round with me about how we need to pay the balance before they will purchase it because insurance only paid for so much, and Medicaid is waiting to see from them an invoice to pay the balance. The vendor won't send an invoice until they've bought it, which they won't do because they aren't assured that Medicaid will pay for it! Confused yet? Welcome to our lives! I hung up with them and called our Medicaid case-worker who gave us some numbers with customer service for CO Medicaid that can hopefully help us out. I feel like we're getting the run-around from the vendors, not wanting to flip the bill...but Medicaid APPROVED IT...they would pay the whole amount, but we have to use our primary insurance first, and they will only pay for half of it. The remainder is around $5,000. Right, let me just go pick that off of my money tree and mail it off to you! Good grief!


Then Max's formula came from the new company. And after talking to her yesterday and saying a total of 6 times, now remember, it has to be this specific Pediasure, and certain type of bags for his feedings...we open the box to the very ones I said NOT to send. They're in Illinois so I couldn't catch them before they left today. I'm sure I'll get a phone call in the morning for the UPS guy to come pick it up.

Our landlords called yesterday with a request to show the townhome tomorrow. Because we aren't going to purchase it, we've agreed to let them put it on Craigslist with the assurance that they will only show it to really serious buyers, who are approved for a loan. So good for them, I hope they sell it quickly. And we will be able to get into something that is all one level! I was going to have their cleaning lady come do the floors and bathrooms, but she had to cancel, so I just have to mop and vacuum the upstairs to be ready for tomorrow.

This morning I got a call from Max's neurologist asking me to help out a "new mom" with a little one that has a little girl who has the same kind of seizures Max has. She came over for a while this afternoon and got to visit with her. It's always so interesting to visit with parents just starting down this road we've been on for 5 plus years now. It makes you remember...makes you see how far you've come...and remember how scary it was. It also makes me so happy when our doctors call for help, or send a new parent our way. It makes me feel like we're a part of the process. That we're not just another file in the system. Our doctors are so great to remember The Watson's, the parents of Max...that might be able to help another parent on their journey.

Well, I think that's all for now. I need to figure out dinner, and get to my Cinderella work.

Breahte in....

Have you ever started to recognize your own breathing...like you're just sitting quietly and you stop to listen to your breathing...in....out...in...out...now slower........in..........out....and faster.in.out. It gets all off, and you have to get your mind onto something else so you can get back to your normal rhythm.

That's what the past several days have been like around here. For the past 5 years I have been doing for Max, all that Max needed. As he's grown it has become more involved, and more difficult, but we adjust and there's been no pressure to perform.

But once it came to my attention all that I do, it's like I've gotten out of the rhythm of life with it all. I mean, do I really transfer him and reposition him 10 times in an hour? Does it really take me nearly an hour to bathe him, dress him, brush his teeth? I call in to check in, set the timer, and two hours later call in to check out.

I'm starting to get it. But still I feel off. I'm sure just like everything else with Max it will just become a new normal. And we'll get through it too.

And here's a picture to make you smile...I do believe this would be proof that he has the Yandell male genes...just call him big foot.

All is quiet...

I feel like I have been away from all communication for ages! Thursday last week, my CNA class ended. In a couple of weeks, I will turn in my papers to the state to see when I will have my test date. Then I will have to perform 5 skills in 25 minutes to become certified.

Friday, I started work. I call in 6 times a day to check in and check out, 2 hours at a time. It's been interesting to be so mindful of the work I do every day. There is honestly nothing I've done in the past 3 days that isn't my usual routine, except calling in for work.

Friday was a busy day. I got up to call in, and Steve headed to the airport to get Abbey and my mom for the weekend. We had lunch, and mom stayed with Max while we took Abbey to the mini golf/go-kart place. Then Friday evening had dinner with our friend (Max's neurologist) who we haven't seen in several months.

Saturday was another day of eating then activity for Abbey. We were trying to do a few things we wanted to get done during Spring Break a couple of weeks ago, but didn't get to because I was in class. Abbey did the climbing wall at REI. She's like a mountain goat! Just shimmies right up the sides of the wall!

Today we had lunch with Ang, and Dan, and Addie before Steve had to take mom and Abbey back to the airport.

Now I'm sitting for the first time in 5 weeks. Not worrying about class...or laundry...or dishes. I just want to chill! I've got to make my catch up lists...to get to everything that has been put on the far back burner while doing the class. But for now I'll just chill!
Here are some pictures:

Abbey and Max snuggling...check out where his little fingers are...


Us at the go-kart track


Pretty Easter eggs...


Max and Daddy went for a "ride" in the garage:


She was just tall enough to drive one herself...she was super excited!


I was just nauseous because of all the curvy turns!


And absolute SHOCK when I made a hole in one...I really stunk out there...like nearly every hole just had to walk away after the 6th try!

Butterflies...

We went to the butterfly pavilion with our friends this morning. Here is one picture...that you can follow to see other pictures.



I don't want to bore everything with a hundred pictures of butterflies! So go on over if you like the little fluttery things...

And if you're more into creepy crawly things...well here's a VERY short video of Max and his little friend Rosie the big hairy spider.



Eeeeew! He liked it though, he wanted to hold her again and again. We only tried the once though. He's a pretty tough guy to let that thing crawl on him!

I'm headed into my final week of class. I'm glad it will be over, and we can get back to our regularly scheduled programming. :)