When we're out

[greysonsmom]

I have the older version of this and it's great. It comes with its own pump and you blow it up and then it all folds away and fits in its own backpack. Great for traveling, maybe something that would work?

www.guavafamily.com/products/lotus-everywhere-travel-crib

[chickypoo2468]

I definitely am trying to not NOT do things because of him. I don't want to get into the habit of keeping him home and away from people just because it's easier, and I don't want my other kids to miss out. It's just so exhausting.

toastie we did get rid of the first stroller we head, it wasn't nearly as supportive as he needed and he looked miserable.
Now we have a regular Chicco travel system stroller and it's SO much better. The only think I don't like is that the back doesn't go completely straight up and down and sometimes it looks like he wants to sit up all the way. For the most part he likes it, as long as we're moving.

When do they decide medical equipment will be beneficial? I obviously don't want to waste money on something he will end up not even really needing, but I hate to not get something and then end up with it years down the road and think "oh, if only we had gotten it back then. It would have helped so much."

Thank you all for your encouragement and suggestions. I'm taking everything to my husband to discuss it and try to decide what to try.

[toastie]

We got our pacer around 15 months.  At the point your child grows out of typical baby gear is when you need to start it.  The pacer is technically a gait trainer, but before they walk it's great as a stander and for bearing weight and then it just becomes a walker.  It lasted until my son started walking at 3.5. He may also love the freedom to move in it, you can lock all the wheels if needed.

our pt phrased the need as, how can he be independently upright and bearing weight? He can't. But that's developmentally appropriate at 15 months. It's important for bone and muscle formation as well as cognitive development.  It may be something to explore.  

Do you have an ARC around you? Sometimes they have lending libraries for equipment.

[chickypoo2468]

Oct 24, 2016 20:55:52 GMT -5 toastie said:

We got our pacer around 15 months.  At the point your child grows out of typical baby gear is when you need to start it.  The pacer is technically a gait trainer, but before they walk it's great as a stander and for bearing weight and then it just becomes a walker.  It lasted until my son started walking at 3.5. He may also love the freedom to move in it, you can lock all the wheels if needed.

our pt phrased the need as, how can he be independently upright and bearing weight? He can't. But that's developmentally appropriate at 15 months. It's important for bone and muscle formation as well as cognitive development.  It may be something to explore.  

Do you have an ARC around you? Sometimes they have lending libraries for equipment.

What is ARC? I'll have to look and see.
Is a pacer something that insurance might cover? He has special insurance that covers things related to hypotonia but I don't know much about all that stuff.
Our PT hasn't suggested anything extra. She said he didn't need a stander bc he goes in his jumper and I hold him up so he's practicing weight bearing. She seems to think he'll be crawling and getting into sitting soon, but she's been saying that for months and I just don't see it happening for a while.
I'll definitely ask her again about equipment this week. I never know how to ask, I'm always afraid I'll sound like I just want to have all the things for the sake of having them. Plus I don't know how to get them.

[luvboston]

What state do u live in?
We go to the most fantastic rehab hospital imo Franciscan Children's in Brighton, Ma they would know exactly what to get you. I will ask our OT tomorrow.

[chickypoo2468]

Oct 24, 2016 22:20:56 GMT -5 luvboston said:

What state do u live in?
We go to the most fantastic rehab hospital imo Franciscan Children's in Brighton, Ma they would know exactly what to get you. I will ask our OT tomorrow.

I'm in Indiana
Thanks!

[toastie]

ARC is association for retarded children. That was its original name, it's for all people with diabilities, not just intellectually disabled children.

[chickypoo2468]

Oct 25, 2016 8:37:55 GMT -5 toastie said:

ARC is association for retarded children. That was its original name, it's for all people with diabilities, not just intellectually disabled children.

We do have that! It's called The Arc here. I sent them an email just now so we'll see what they say.

The PT did mention trying a walker so I asked if she was talking about the pacer and she said yes, she has a small one at the clinic. Fx she brings it tomorrow.

[luvboston]

chickypoo2468 my OT told me to tell you to move here;)
She said that she thinks the reason your lo doesn't stay in the stroller for long or some kind of chair thing is bc kids with low tone tire after a short time and the are constantly fighting to find an easier position. She said a better support chair is the way to go she suggested these however she sternly told me that your pt should have give you this!

www.rifton.com/products/special-needs-chairs/rifton-activity-chairs

[chickypoo2468]

Oct 25, 2016 21:50:19 GMT -5 luvboston said:

chickypoo2468 my OT told me to tell you to move here;)
She said that she thinks the reason your lo doesn't stay in the stroller for long or some kind of chair thing is bc kids with low tone tire after a short time and the are constantly fighting to find an easier position. She said a better support chair is the way to go she suggested these however she sternly told me that your pt should have give you this!

www.rifton.com/products/special-needs-chairs/rifton-activity-chairs

She should have given me the info or the actual chair? I'm staring to question if she's doing enough for him. It's a whole lot of "make him do this, make him do that, now let me talk about my other clients and my daughter while he sits there" but I don't know that any of the actual progress he's made is because of her. I'm sooooo not confrontational in this type of scenario though. And I'm not the therapist, maybe just making him go through the motions is appropriate?

And she just cancelled today of course. She's good about showing up, but I was really looking forward to seeing the pacer.

Thank you so much for asking! And I would gladly move anywhere if it was that easy lol

[chickypoo2468]

Also. Letters of medical necessity. Can I write them or is it better to have the therapist write it? Or do I need to ask the ins company?

[toastie]

I thought of something else
What about one of these kinds of trikes?
t.toysrus.com/product/index.jsp?productId=59479226

My boys loved it. Between the 5 pt harness, the side bars and the handles it was plenty of support

As for letters of medical necessity usually you need one from a dr and one from a therapist.

[luvboston]

Oct 26, 2016 8:58:14 GMT -5 chickypoo2468 said:

Oct 25, 2016 21:50:19 GMT -5 luvboston said:

chickypoo2468 my OT told me to tell you to move here;)
She said that she thinks the reason your lo doesn't stay in the stroller for long or some kind of chair thing is bc kids with low tone tire after a short time and the are constantly fighting to find an easier position. She said a better support chair is the way to go she suggested these however she sternly told me that your pt should have give you this!

www.rifton.com/products/special-needs-chairs/rifton-activity-chairs

She should have given me the info or the actual chair? I'm staring to question if she's doing enough for him. It's a whole lot of "make him do this, make him do that, now let me talk about my other clients and my daughter while he sits there" but I don't know that any of the actual progress he's made is because of her. I'm sooooo not confrontational in this type of scenario though. And I'm not the therapist, maybe just making him go through the motions is appropriate?

And she just cancelled today of course. She's good about showing up, but I was really looking forward to seeing the pacer.

Thank you so much for asking! And I would gladly move anywhere if it was that easy lol

Both she should have told you about the chair and gotten a script from the doctor to get the chair and then show you how to use it. Is this ei?

Do you have a physiatrist?

Also you can always ask to have this woman's manager come to a session and give their opinion.

Listen if your instinct is that they aren't doing enough your probably correct. I suggest trying to find another parent to talk to with the same condition to see if they are having the same experience.

Even though we have phenomenal therapists I still question them constantly. And they voluntarily have their boss come on occasion to video my son and make sure they are doing the right thing and enough.

It's pathetic but you constantly have to fight to get good care.

[chickypoo2468]

Oct 26, 2016 14:05:47 GMT -5 luvboston said:

Oct 26, 2016 8:58:14 GMT -5 chickypoo2468 said:

She should have given me the info or the actual chair? I'm staring to question if she's doing enough for him. It's a whole lot of "make him do this, make him do that, now let me talk about my other clients and my daughter while he sits there" but I don't know that any of the actual progress he's made is because of her. I'm sooooo not confrontational in this type of scenario though. And I'm not the therapist, maybe just making him go through the motions is appropriate?

And she just cancelled today of course. She's good about showing up, but I was really looking forward to seeing the pacer.

Thank you so much for asking! And I would gladly move anywhere if it was that easy lol

Both she should have told you about the chair and gotten a script from the doctor to get the chair and then show you how to use it. Is this ei?

Do you have a physiatrist?

Also you can always ask to have this woman's manager come to a session and give their opinion.

Listen if your instinct is that they aren't doing enough your probably correct. I suggest trying to find another parent to talk to with the same condition to see if they are having the same experience.

Even though we have phenomenal therapists I still question them constantly. And they voluntarily have their boss come on occasion to video my son and make sure they are doing the right thing and enough.

It's pathetic but you constantly have to fight to get good care.

And now we are back to the main issue- we have no diagnosis. I don't know why he is the way he is, and I haven't been able to find anyone who has a kid like him.
We're at week 7 of the wait for genetic testing results, results take 8-10 weeks. We could find out something soon, or they could come back negative and we can try a different genetic panel and start the process over.
The thing that sucks so bad is that I don't know what his prognosis is, so I have no idea what to expect or what he will have to overcome or need or anything. I know a diagnosis doesn't give a definitive picture of his future, and that everyone is different, but I feel like it would give us an idea. Like we're at the point where we aren't even worried that he won't walk or won't ever be able to properly use his hands, we just want to know if that's the case so we can accept it and address the issues properly. I can't stand waiting and feeling like I'm doing nothing.

I have never heard of a physiatrist, so I'll look that up. But yes he's in EI and that's how he gets all of his therapy.

I just remembered that we see the developmental ped tomorrow so I'll discuss all of this with them. Maybe they can help?

[toastie]

A physiatrist is a great start. We see one. They basically deal with how the muscles and skeleton work together. They are who writes our prescriptions for orthotics, dme, and muscle relaxers. They are usually listed as sports medicine doctors.

It took us 15 months to get a diagnosis but many of the kids I know from school don't have one

Dev pedi should be able to help, but don't be surprised because your kid is rare. It's hard to find people who know things about rare kids.

[luvboston]

The developmental ped should def be able to refer you to a phys how far are you from Cincinati Children's? It sounds like you could use a complex care team to figure all this out for you. It might be worth it to get some big guns working for you now.

[chickypoo2468]

Oct 26, 2016 15:44:03 GMT -5 luvboston said:

The developmental ped should def be able to refer you to a phys how far are you from Cincinati Children's? It sounds like you could use a complex care team to figure all this out for you. It might be worth it to get some big guns working for you now.

Looks like it's about 4 hours. We started going to Riley's in Indianapolis, that's about 3. So far we've just seen the neurogeneticist there. The neurologist, developmental ped, and neuropsychiatrist are all at a closer pediatric specialties clinic.

[luvboston]

I looked up Riley and it looks like a good place! The program they have that is similar to Complex care is this www.rileychildrens.org/support-services/circle-of-care/

Perhaps if you call them and tell them what your going through they can help you get better care.

[chickypoo2468]

Oct 26, 2016 23:11:20 GMT -5 luvboston said:

I looked up Riley and it looks like a good place! The program they have that is similar to Complex care is this www.rileychildrens.org/support-services/circle-of-care/

Perhaps if you call them and tell them what your going through they can help you get better care.

Wow that is very cool. I'll have to remember them as we progress with his care.

So I met with the developmental ped today and they are referring him to some other PT who will come to our home and assess what equipment he can benefit from, and then write the letters to our ins. I voiced my concerns about his current PT and I think she said I can ask about that then as well. And she also said that if I'm doubting that she's doing enough that I'm probably right and not to be afraid to ask for a new one.
Our EI service coordinator had also given me a packet for a Medicaid waiver program, but never explained what it actually was and I had no idea how to actually apply so they are taking care of that as well.
I love our developmental ped. Like for real.

[chickypoo2468]

Oh look, I'm back again. And annoyed again.
So the medical equipment lady was asking for a chair (a ki flip) a seat for eating that is portable so we can use it for other stuff (special tomato) a bath seat (thank God bc I was about to start saving my pennies for one) and a rifton pacer. Also a car seat but we don't need that now so I called and left a message that I don't want it.

I told his OT and she was concerned that the tomato seat is too huge of a seat and that if he gets the ki chair now he might outgrow it before the 5 year period you have to wait to get a new one, but the guy who did the measurements said growth was built into it.

His PT came today and when I asked if she had spoken with the equipment lady she said yes and she had mixed feelings about it. She said that I will hate the bath seat (but at least I can safely give him baths right?) and asked if I tried a laundry basket. I have but he flips out and is flailing and pissed and scared so how the hell am I supposed to hold him still in it? And if he tips it tips. That can't be safe.
Then the chair- she said he can already sit up. Which he can, but not in the stroller bc it doesn't go straight up and the straps hold him down weird. When he tries to sit they dig into his sides. But he cant sit straight for long. I said I think he gets tired but I think she pretty much said he's lazy. When I said I keep having to reposition him bc he sinks down or falls over she said "he takes what you give him" like how when you sit behind him he will roll his back to feel if you are there. But what? He slumps. He needs to not slump. He is miserable. I am miserable. I want to leave my house.

But so now I'm worried and doubting again. I was so excited but ug.

[Deleted]

I understand the doubt. I still think you should get the equipment you need because it will help both of you.

I get her point, in a way it's every PT's point- keep them working, get them strong. And you should, but you aren't there yet. So I don't think one precludes the other. You can get the equipment AND keep working on his strength.

[chickypoo2468]

Nov 9, 2016 19:57:32 GMT -5 @clarypax said:

I understand the doubt. I still think you should get the equipment you need because it will help both of you.

I get her point, in a way it's every PT's point- keep them working, get them strong. And you should, but you aren't there yet. So I don't think one precludes the other. You can get the equipment AND keep working on his strength.

Thank you.

And I just remembered that I had asked her a few times over this past year if she thought there was something else wrong with him and she kept telling me no, he was fine. But it turns out there is more. So I'm not putting too much stock in her thoughts right now. But I don't want her opinions to keep him from getting the added help.

[luvboston]

Get the equipment Now! If you don't I'm coming to Indiana even in winter and delivering it!

Who the duck cares what a pt says she doesn't live your life. Also once I find an amazon box I'm sending you this:
www.amazon.com/gp/aw/d/B000056OV0/ref=mp_s_a_1_1_a_it?ie=UTF8&qid=1478742873&sr=8-1&keywords=primo+eurobath

[chickypoo2468]

Nov 9, 2016 20:56:05 GMT -5 luvboston said:

Get the equipment Now! If you don't I'm coming to Indiana even in winter and delivering it!

Who the duck cares what a pt says she doesn't live your life. Also once I find an amazon box I'm sending you this:
www.amazon.com/gp/aw/d/B000056OV0/ref=mp_s_a_1_1_a_it?ie=UTF8&qid=1478742873&sr=8-1&keywords=primo+eurobath

That looks awesome! It looks way better and more comfortable than the baby tub I gave up on. And easier to play in the water.

And you're hilarious lol. I'm fully planning on the equipment, I just hope she didn't sway anyone who matters when it comes to making it happen.

[chickypoo2468]

Nov 9, 2016 21:59:25 GMT -5 chickypoo2468 said:

Nov 9, 2016 20:56:05 GMT -5 luvboston said:

Get the equipment Now! If you don't I'm coming to Indiana even in winter and delivering it!

Who the duck cares what a pt says she doesn't live your life. Also once I find an amazon box I'm sending you this:
www.amazon.com/gp/aw/d/B000056OV0/ref=mp_s_a_1_1_a_it?ie=UTF8&qid=1478742873&sr=8-1&keywords=primo+eurobath

That looks awesome! It looks way better and more comfortable than the baby tub I gave up on. And easier to play in the water. That would be amazing!

And you're hilarious lol. I'm fully planning on the equipment, I just hope she didn't sway anyone who matters when it comes to making it happen.

[macchiatto]

Sorry about all the frustrations. I really hope you're able to get the equipment you need!
I do have experience with the Peapod XL's. We used them as travel beds for my twins when they were 3-4. I would think there would be space for a young toddler to roll around a bit; not sure how quickly he'd get bored with it though.

[chickypoo2468]

Nov 19, 2016 18:02:30 GMT -5 macchiatto said:

Sorry about all the frustrations. I really hope you're able to get the equipment you need!
I do have experience with the Peapod XL's. We used them as travel beds for my twins when they were 3-4. I would think there would be space for a young toddler to roll around a bit; not sure how quickly he'd get bored with it though.

Thanks. And yeah, he gets bored with most things. And frustrated bc his only way of communicating is crying.
We got one of those drawstring mats and that seems to help designate his safe space, even though he doesn't necessarily stay on it lol. I've also started bringing the iPad, but I feel bad bc theres really only one app he likes and it's more watching than actually doing. But I guess if he's happy that's all that matters. At least until other kids are practically climbing on top of him to see the iPad too. Ug.
I don't think we will be buying anything more for now and we will just wait for the ins to decide on the equipment.