Please help me

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Registered: 03-05-2004
Please help me
9
Wed, 11-15-2006 - 1:57pm
I have a daughter that will be 3 in Feb. and dev. and mentally she's only about 8 months old. She doesn't walk or talk but does crawl. I'm really starting to have a hard time adjusting to parenting her. She's an absolute princess and a blessing to have around but it breaks my heart to know that she's getting too big for me to handle on my own during the day. She's 38" tall and 38 lbs. I'm 5'6" and 135 lbs. My back and arms are aching all the time from lifting her and even though she has a wheelchair for out of the home it's almost more of a pain to use than just a stroller. I was almost in tears this morning because I lifted her up into her highchair and almost broke my back. I know someday I'll have to get a PCA for her to help but at this point I'm just not ready for that. She doesn't really have any medical needs.
Anyways, I'm writing this hoping that there will be other parents out there with more experience that can tell me what your hints and tricks are. How do you make things easier for yourself and what do you use when diapers, high chairs, strollers, etc just aren't big enough for your child? Depends are huge and there's nothing in between.
Thanks for any help,
Jennifer

Jennifer

Ainsley 8, William 7, Peyton 6 *8p23.1 duplication syndrome*,  and Jackson 4. www.onever

iVillage Member
Registered: 03-25-2003
In reply to: jrysdam
Thu, 11-16-2006 - 12:18am

On the diaper front, I often had students in my class that were bigger than the diapers that they usually make. Adult diapers just won't do, but Overnights by Huggies fit the bill. They are for bigger kids who are potty trained, but still wet the bed. You may want to try those. They are "Pull-up" type diapers, but they really do work well for bigger kids.

As for strollers, one of my former students (now 21) has balance difficulties and her parents purchased a sort of adult stroller when she was a teenager. If your daughter has a physical therapist, they should be able to suggest a company for items like this. IF your daughter has a wheelchair, a wheelchair tray may do the trick for feeding times as opposed to a high chair. I'll consult some people at work and get back to you.

I hope that this helps.

Dawn

iVillage Member
Registered: 11-09-2006
In reply to: jrysdam
Thu, 11-16-2006 - 2:46pm

My DD age 13.5 has to wear pull ups. I am lucky that her insurance covers this expense. We go through a medical supply company. There are pullups and diapers out there that will work for your child. Here is a link to a med company with some of the different products they sell along with the sizes. http://www.northshorecare.com/pullonsyouth1.html

HTH

siggie

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Registered: 03-05-2004
In reply to: jrysdam
Thu, 11-16-2006 - 10:42pm
Thanks so much for the advice. I will definitely check out the nighttime pull ups because even the Depends don't always work so well because there isn't a snug fit.
We do have a tray for her wheelchair but she's such a messy eater that she'd have the chair wrecked. I actually just went last night and got her a new highchair that has adjustable height settings. I have her way down by the floor so that helps because lifting her into the highchair is SO hard with her size. I had tried to sit her in a booster at the table but our table is really big and she uses it as a launching pad :o) One swipe of her arm and everyone is full of her food :o) The chair in only rated for up to 37 lbs and she's 38 but I'm hoping she won't grow much for a while since she's so big already.
Thanks again,
Jennifer

Jennifer

Ainsley 8, William 7, Peyton 6 *8p23.1 duplication syndrome*,  and Jackson 4. www.onever

iVillage Member
Registered: 03-05-2004
In reply to: jrysdam
Thu, 11-16-2006 - 10:44pm
Thanks for the info and the link. I do have to check with my insurance soon and see what all they cover. I'd hate to be buying all this stuff and then find out that it's covered.
Thanks again,
Jennifer

Jennifer

Ainsley 8, William 7, Peyton 6 *8p23.1 duplication syndrome*,  and Jackson 4. www.onever

iVillage Member
Registered: 11-09-2006
In reply to: jrysdam
Thu, 11-16-2006 - 11:13pm
Oh, they might need a doctor to write up a prescription for it. I know that we have one from our pediatrician that gets done every year and automatically sent to our medical supply company and the insurance company at the same time. What makes it really nice with the prescription is my DD's height and weight is listed on the prescription each time so the company always gets the right size sent to us.

siggie

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Registered: 11-09-2006
In reply to: jrysdam
Thu, 11-16-2006 - 11:21pm
Could you cover the wheelchair (every part except the tray) with a sheet that could be used all day long and then at the end of the day have it to where you could wash it? I know that messes are big for even my DD and I mostly feed her myself. But we found that using a sheet to cover the chair works wonders. After she is done eating, we just pick up the sheet and then take it outside to shake out all loose food, which ends up getting eaten up by the birds around here. Then when the next meal hits we cover again. During the night or first thing in the morning, I do a load of laundry and toss it in with my load of laundry. I even use this when I am trying to let her eat on her own.

siggie

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Registered: 06-06-2006
In reply to: jrysdam
Fri, 11-17-2006 - 3:21pm

This site has several different seating options. You might need to find out if your Dr. can write you a letter of Medical necessity, so that insurance will cover some of the costs. The equipment can be very costly. http://www.adaptivemall.com/sptoherich.html

Saara mom of Naim 8, Ahsan 6, Ilyaas 18 months, EDD 1/30/07

Avatar for mt_happydaze
iVillage Member
Registered: 03-26-2003
In reply to: jrysdam
Mon, 11-20-2006 - 10:26pm

Hi Jennifer

For our 13 yr. old(she'll be 14 in a couple months), we bought her a giant beanbag chair last Christmas and that thing is great! That is usually what I feed her in at home. It isn't too hard to haul her into it because it isn't high so I can just kinda "drag" her over to it, hoist her into it by straddling her and lifting (with my legs), then I land in the bag with her. Hard to explain in words, but it works for us! Maybe your dd could even crawl into it herself?

The beanbag we got isn't your usual styrofoam pellet filled bag. We used to have one of those for her but it was always needing more pellets added because they get compressed. It is called a Foof Chair. I bought it online, you should be able to find them. I shopped around till I found the best price, I think it was around $100-$120(??), including a cover. It is quite large, you can get smaller ones for less. They are expensive, but really no more than a regular bean bag. The Foof beanbags are filled with chunks of foam and they don't have to be continually filled because they don't compress(not permanantly). If it gets flatter than you like, you just fluff it back up.

I need to get to bed but will try to think of some more ideas for you and post tomorrow!

BTW, I know it gets soo much harder as these gals get larger. My dd is probably around 90 lbs. now(she hasn't been weighed in a few years and was 80 then). I am 5'4" and around 120 lbs. She is nearly my size--SCARY!!

Pam

Avatar for mt_happydaze
iVillage Member
Registered: 03-26-2003
In reply to: jrysdam
Tue, 11-21-2006 - 8:06am
These are the diapers we use: http://www.hdis.com/itemdetail.asp?id=1289
She started out in the Youth size, which is pretty small. The diapers are delivered to us by UPS every month and paid for by her Medicaid. I think we probably had to get a dr.'s prescription. In NC, diapers are covered, don't know about your state.