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Extreme Veteran
Posts: 370
 
Location: Maine | Okay, so I FINALLY make the decision to go ahead with physical therapy, and now there is nobody around who will do it. We moved closer to my husband's work a couple of months ago, about 25 miles farther away from everything and our physical therapist couldn't come with us. Everyone else did, thank goodness we still have the same medical supply company and home health nurse. So, CDS had to start looking for someone else to work with Paige. The result: there is no one who will come to the home. I would have to take Paige to the hospital for therapy, and I really don't want to do that because it is just one more upsetting thing that couldn't be in the comfort of our own home. So, whatever PT she's gonna get, I have to do. Thankfully she's starting to get the urge to explore a little. She scoots on her bottom, and she is also trying to stand and will attempt to walk if someone is holding her upright. Now I have two important questions. Can anyone refer me to a book or website or something that could help me do proper exercises with her? and How do I let her get around when she is tethered to a kangaroo pump continuosly throughout the day? That tube only goes about three feet, anyone had this problem before? Any suggestions? |
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Elite Veteran
Posts: 806
Location: Divide, Colorado | Kris ~ I'm so sorry to hear of the aggravations your having with getting PT for Paige! I know what a frustration that can be.
Although I don't know of any books or websites offhand - have you looked up the ECC coordinator in your area?? ECC - Early Childhood Connections - is specifically designed to bring resources TO THE HOME of the child who needs them, and this includes PT. Call the local schools, or social services offices and they should be able to direct you in the right place. I "think" this is a federally mandated program, so should be available in all states. This is what we did for Nikki when we moved to what felt like the middle of nowhere - and lo and behold found a PT and an OT who would come to the house.
I hope this is available for you in your area! We'll be thinking about you both!
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Extreme Veteran
Posts: 395
| Hi Kris, I know this PT thing is frustrating for you. Elizabeth was diagnosed around 7 mos. with scoliosis and started PT at 8 mos. The older she got though and the more mobile she became, our schedule went from 2 days per week to 1 day, then 1 day every other week and then once a month(just to keep an eye on her really) and by the time she was 3 and a half, we stopped all together, as the PT itself did not seem to help stop the progression of her curve.
Elizabeth did not sit independently until 10-11 mos., shortly thereafter started pulling up and too was a "bottom scooter". By 18 mos. she could walk holding on to someone or something and did not walk independently until 3yrs.,3mos.old. The more mobile she became though, it was as though she was giving herself PT as she was constantly on the move. Unlike Paige, she was never tethered to anything, so I know that is an obstacle for Paige. I did though, or someone had to pretty much be by her side when she was walking because her balance was so off as her curve then was around 85 degrees and she had such trouble balancing herself. So I know you (someone) must probably stay by Paige's side at least to keep her tubing from being pulled loose or tangled. It made for LOOOOONG days following Elizabeth around. I feel for you if you are in that same boat. I believe in PT and therapies in general, but I believe there is so much you can do with her. Perhaps going to the hospital you spoke of and getting new exercises/ideas once a month would be helpful for you, and for a therapist to keep track of Paige's progress/changes. Sometimes I was given handouts on exercises to do with Elizabeth. I do hope you are able to find a solution that works for Paige and you.
Elizabeth  |
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Extreme Veteran
Posts: 308
| PT, never ending. Always needed. Much time....I feel for you. Hang in there! Rhonda |
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Elite Veteran
Posts: 1127
Location: Vancouver, Canada | Hi,
We never had PT for either of the boys, but we did have some suggestions from the ortho PT professional for Malcolm before surgery. He was to do bilateral stretching (for Paige, this would be lying down, gentle stretching of one hand over her head, then the other hand, to stretch both sides), crawling in circles in both directions (Paige is too young...). We had a PT come to see William and she suggested things much in the same thing; to wit, stretching so that no one side tightens up. Gentle, gentle.
Now the boys have rods, and I don't push anything on them. They do it themselves, swinging, jumping, twisting, sometimes with me screaming at them to STOP before they break something!!!
Sheesh. KIDS!
One PT appointment could teach you what to do, if you could find someone to visit.
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Extreme Veteran
Posts: 441
| What about your state's early intervention program? Billy was a part of this from birth till three years of age, and we had a PT come to the house every other week, and she would give me suggestions for helping Billy in the off time... Paige might even qualify for more frequent visits... (unless CDS is your state program?)... For Billy, we would place him upright leaning against the couch, and put toys up on the couch that he REALLY liked (or the TV remote, haha) to try and encourage him to stand there. After he got better at that, we would move the toy a couple inches to try and get him to "cruise" a step or two sideways, etc, etc, as he got stronger... Also, she may be a bit young yet, but can you get a portable pump small enough to put in a tiny backpack? A friend of mine's daughter had this, and it gave her greatly increased ease of mobility... Best of luck! |
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Member
Posts: 12
Location: Gilbert, AZ | We also are going through Early Intervention for PT for Luke, and speech for Leo, my other son. I know they can come right to your home for PT and i is great, and free too:) I don't know too much about Paige and her history, but can you increase her rate on her pump so that you can turn it off during therapy? As long as she is getting the same amount (CC's) during the 24 hr period. (I am an RN, but not for peds at all, that is what I would do for an adult).
Good luck! Jennifer
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