[Ditzzy]

Who's here? How is everything going?

[nvr.4.gtn]

We are here.
Avery had her 6th surgery yesterday monring and it went well. I guess technically it was not a "surgery" it was an exam under anesthesia, he pulled the stitches out, and did a refraction. So no cutting but still no fun!

[sweetmelissa]

I'm here. Not too much happening here. Just had our friends wedding last night and now were just relaxing this weekend.

Rachel has a check up on the 28th & will be getting another ultrasound to check on the lump in her stomach. We're also going to be talking to her doctor about her leg & ability to walk. Right now the only thing keeping her out of a wheel chair is the stroller. So we're going to discuses the future.

[C&K'sMama]

Kaytee - 6 surgeries. I can't imagine. You and your girl are tough cookies!

Melissa - I didn't realize that Rachel wasn't able to walk. You'll be in our prayers that the u/s goes well and comes back with good news.

As for us. We're definitely here It's been crazy busy and with out move right around the corner its just going to get worse. Long story about Carrie's school, but it got so bad that I withdrew her on Friday. I can't deal with those people anymore and she only had 3 weeks left anyway. She receives all her therapies privately as well as at school so I don't feel like she's missing anything. My heart is breaking though that we don't get to see her PT anymore. I swear that woman is closer than most family and cried with me when Carrie took her first step. She's an amazing woman and we've been lucky to have her for most of Carrie's life. I know that Carrie wouldn't be doing as well without her. I'm kinda struggling with losing her if you can't tell

Everything else is really good though. Lots less stress since pulling her out of school.

[mamma_anna]

I'm here.

Hope...How is Ava doing? Better I hope.
Kaytee...Glad Avery is doing okay. Hope this means you guys can have a break from surgeries for a while.
Melissa...I love weddings. Hope you had a good time. We're using a stroller instead of a wheelchair most of the time here too. It's not going to last much longer for us. Those are some tough conversations. Hope all goes well with that and with the utrasound.
Alycia...I swear sometimes it seems like Carrie and Ellie are living parallel lives! (hope I'm not freaking you out ) It's always tough loosing someone you're close to. Especially when they're a special person in your child's life too. I'm sure she'd apreciate keeping in touch with you and getting pics/updates on Carrie through email. (or if you're on fb) I'm praying for you. Hope the move goes well.

We've been busy. We pulled Ellie out of school on the 29th. I got a call that morning that she'd been hit in the head with a wooden block. That was the final straw! So we're sort of homeschooling for the nex few months until she starts kindergarten. Yes, she's going to kindergarten at the private school with her sisters!!!
She's been doing really well since being home. All her therapists agree that she seems happier and more relaxed. She actually likes using her walker now and she had an actual conversation with the clerk at the grocery store yesterday. (yes I'm happy that my kid is talking to strangers)
We had a full day of doctors appts on Monday. Ellie's doing well overall. We're seriously considering botox and serial casting for her legs in the near future.

Okay that's enough of an update for one post.

[greenchild]

I'm here we have lots going on next week, Kaiden's got a hearing test scheduled thru the school - they were really nice and set that up for him. His pedi's been pushing for another hearing test soley based on him having DS (the protocol is every 6 months bc DS kids typically have so many ear infections or structure issues), even though the first test proved his ear structure is perfect and he's never had an ear infection, they only had a concern about his auditory nerve function bc he wasn't realizing that sounds have meaning. After his seizures stopped he made that connection and we AND his therapists do not have any concerns about his hearing so it really irks me that his pedi is pushing it so hard. I sat thru his first hearing test and we've done the exact same things here at home quite often to test him ourselves . . . so to quiet the pedi the therapists set it up thru the school where it's free rather than going to the Children's hospital where it's going to be $500 out of pocket minimum since we haven't used our deductible yet. Ugh! Sorry, that turned into a rant but the whole thing really irks me!!

And we have his IEP meeting on Thurs, which I am actually quite excited for. I know one of the things we will be working on next is communication skills, and they'd like to do that in a school setting, thinking a change of scenery might help since he refuses to sign for me. Yes, refuses he was signing until he realized that sounds have meaning! and hasn't signed since. A couple weeks ago they mentioned we might want to start him in preschool even though they said they normally don't take kids under 3. This has me prematurely excited that they *might* think he's doing well enough developmentally . . . don't want to get too excited though, KWIM? But he's done SO well since eliminating nightshades (and thereby eliminating the seizures) . . . ack, IDK what to think. Just have to wait until Thurs when we can discuss it in depth with everyone there.

[Ditzzy]

Melissa - Ava uses a wheelchair (she has stamina problems) and she loves it. She picked the color. Her wheelchair is lightweight and we can put it in the back of our van. We have an IV pole attachment and tank holder. We went to the seating clinic at childrens.

Ava is still sick. It doesn't take much with her.

[mrshowdy]

I'm here!!!

Mostly we are just getting everything together for Layne to enter Kindergarten in the fall which of course means evaluations and IEP's. He's doing well though so we are happy about that.

Its also the time of the year for lots of follow ups. Neuro wants him on anti-seizure meds, we say no. The supplements have been working well for helping with brain development and other than some leg issues has been healthy for a little while.

I always feel like so much is going on but I don't wanna write a book. LOL

[sweetmelissa]

Originally Posted by C&K'sMama

Melissa - I didn't realize that Rachel wasn't able to walk. You'll be in our prayers that the u/s goes well and comes back with good news.

She can walk for short distances but after 5-7 minutes her leg hurts her and she has to sit down and rest for a bit (usually half an hour).

Ditzzy - That sounds like an awesome wheelchair! Do you have a picture? We have started to look at a few but I haven't seen any that you can pick the color. I know we have a bit since she still fits so well in the stroller & we use it everywhere anyways since we have Lilly but I know the day is going to come where she's going to need one.

[C&K'sMama]

I know convaid makes pediatric wheelchairs and you can choose the color (and frame color on most) we have a stroller of theirs and LOVE it.

convaid

correction. according to the website we have a wheelchair (I though all wheelchairs had big wheels where the passenger could control them)

We have this one in purple (not available in pink, but lots of their products are )

Convaid Scout 12" Basic | Adaptivemall.com


adaptive mall also carries a lot of convaid items as well as strollers and other adaptive equipment if you haven't looked there (this is where we picked ours out from and our insurance covered it)

[sweetmelissa]

This may sound crazy (or maybe not) but do most insurance providers cover a wheelchair? We have Tricare Standard so I'm not sure if they will cover it or not. Then I also have to see if Medicaid will cover the 20% that Tricare won't.

Has anyone worked with Tricare while getting a wheelchair for their child?

[C&K'sMama]

I'm on Tricare prime Have you enrolled in Tricare echo (if not, go to your tricare office and ask for the papers)? You'll probably have to. It's for duarble medical equipment, but totally free (if not it costs so little that I've never noticed). They cover walkers, wheelchairs, and most adaptive equipment. They cover up to $2000/month and if your equipment costs more than $2000 than they'll spread it out over several months. Like if the wheelchair was $5000 and if you ordered it today they'd put $2000 on April, $2000 on May, and $1000 on June. They say that you have to pay $30 for either every month you use it or for every piece of equipment (I don't remember which it's supposed to be), but we've used them for almost $10,000 on 4 pieces of equipment and haven't seen a bill for a cent (and we received our first piece of equipment last October).

[Ditzzy]

Here's some pics of her wheelchair. Most wheelchairs have color options.

[C&K'sMama]

That is so much cooler than any of the ones I've seen!

[sweetmelissa]

Originally Posted by C&K'sMama

I'm on Tricare prime Have you enrolled in Tricare echo (if not, go to your tricare office and ask for the papers)? You'll probably have to. It's for duarble medical equipment, but totally free (if not it costs so little that I've never noticed). They cover walkers, wheelchairs, and most adaptive equipment. They cover up to $2000/month and if your equipment costs more than $2000 than they'll spread it out over several months. Like if the wheelchair was $5000 and if you ordered it today they'd put $2000 on April, $2000 on May, and $1000 on June. They say that you have to pay $30 for either every month you use it or for every piece of equipment (I don't remember which it's supposed to be), but we've used them for almost $10,000 on 4 pieces of equipment and haven't seen a bill for a cent (and we received our first piece of equipment last October).

I haven't heard of that at all. Hmm were about two hours away from the nearest base.. Maybe I can call them & have them fax me the forms? DH is medically retired due to being injured while deployed so we haven't been on a base in 2 years now.

Originally Posted by Ditzzy

Here's some pics of her wheelchair. Most wheelchairs have color options.

That chair looks awesome!!

[C&K'sMama]

Originally Posted by sweetmelissa

I haven't heard of that at all. Hmm were about two hours away from the nearest base.. Maybe I can call them & have them fax me the forms? DH is medically retired due to being injured while deployed so we haven't been on a base in 2 years now.

You can probably get them to at least mail it to you. I think I ended up mailing mine in (I picked it up at the hospital though). ECHO is a well kept secret in the Army world, but they're paying for a $7000 dynavox for her. They've already paid for a $2,800 stroller/wheelchair and a $250 walker and her SMOs (foot orthotics). I can't imagine paying for any of that out of pocket. (technically the dynavox hasn't been approved yet, but they anticipate that it will be)

[mom2myJo's]

I am here. I just have had a lot going on with the kids.

Joseph- will have his last OT session on the 19th until July as the insurance will be maxed out and I can't afford to pay $340 per hour for her. He has his first observation tomorrow for getting an autism diagnosis with Early Intervention. He already has the medical dx and we get SSI for him. His eyesight is worse and I am waiting for his NE glasses. If he is not better, he will have surgery. He has speech every other week and EI has been filling in the OT gap that I will have. I just got his indoor net swing installed and he would live in it if I would let him. We are working on starting to answer questions and teaching him how to form three word sentences. I hope to begin potty training and audio conditioning soon.

Jocelyn- just had her developmental follow up. The doctor claims she is normal now even though she has feeding issues. The low tone is getting better. She will still go to OT and will have a Speech Path and a PT to help out with her tone for a while. I have abandoned the idea of going to the breast and now will help her with her transition cup and will start solids in a couple weeks. She is rolling over and not trying to sit up and is cooing and smiling. I really hope things start to look up soon. I am still afraid of autism as my son has it and I was naive with him and I won't make the same mistake again.

I have three months left to pump milk and then I will be done. She weighs 16 lbs 5.9 oz and is 26 inches long and she will be five months old on Saturday. I have been busy singing in the chorus preparing for my concerts and preparing to work Holy week getting paid to play flute so lots of practices for me. I can't wait until summer when things are slower for us to relax for a bit.