Now I really need your help sorting things out! I have this equipment savvy Physical Therapist who does not talk about anything else but EQUIPMENT!! Yesterday I took Amelia to her expecting some nice exercise and she jumped on taking Amelia's measurements for the special stroller! She even showed me one, boy - scary looking! We surely look for some back support but this stroller supports everything, back, head, legs, has even side support! And I am the type of person that does not like to say NO! So she scared me to the bones, made me anxious and confused. If I say no -to all of this, and the stroller isn't the end of it - perhaps I am a bad mommy jeopardizing my precious baby's development.....Like this did not hit me enough - she started talking about the walking support, bathing support and finally - so called - "self initiated mobility" in terms of highly maneuverable mobility device. Does Amelia really need this ? Quite overwhelming. She already arranged a meeting with the sales person - he will be talking about how we can customize this special strolled to meet Amelia's needs.... My husband said that she must be on commission. It seems we need a second opinion.
Any parents reading this have any equipment experience which helps the child with achondroplasia? There is so much out there that can help but I just do not want to go crazy and would like to hear what can or cannot help when it comes to specialized equipment.
Thank you all for your continuous help with Ami's adventures in Achondroplasia land :-)
Wednesday, September 23, 2009
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Kasia! Your feelings are correct. Amelia does not need all that special equipment and by no means does she need a special stroller. The only thing "special" we had for Caden was his medical grade walker, you may have seen it some of my post, if not I could point you to one. I do believe that walker is what really got Caden going. It was sturdy enough that he could put all of his weight on it and balance on it as well. Hang in there ~ try not to let that PT talk you into something you don't need :0)
ReplyDeleteMy goodness! I agree with Jarek. What benefit does the OT receive for recommending all of that equipment. None of Ivy's doctors at Hopkins have ever mentioned any adaptive equipment. That stroller sounds like a monster. How can it help Amelia become more mobile if every part of her is being supported? How can she look around and reach for things? Bathing support? Strange. I have always been told that Ivy should be allowed to develop on her own time. At our last visit with the genetics team, it was stated that if Ivy does not walk by age 2, then we may need to look at therapy of some sort. Caden's Mommy is right, don't spend a ton of money on things you don't need or Amelia won't like. See you soon!
ReplyDeleteOh she must be on some kind of commission because achon kids do NOT need all this!!!
ReplyDeleteI have to agree. Achon. kids do not need all of that. The only thing that you might need to add is a sturdy board under your stroller seat. Just to give a little more support. Just a regular stroller. She doesn't need anything else. It seems like the stroller might hinder her more that help her. I wouldn't let her talk you into anything. Go with your gut.
ReplyDeleteAmelia needs to use her muscles, not have them constantly supported! Trace had nothing special, except a medical walker, much like Trisha's Caden. The walker was great with giving him support for walking! Just say NO and get a new PT.
ReplyDeleteLike everyone else already said, Amelia does not need all of that equipment. Any time that Simon's PT recommended something special for him, I always told her to let me run it by his ortho first, and Simon's ortho always said no to whatever chair, shoes, etc that she was recommending. When I would report the answer of no back to his PT, she always said ok, made a note, and then that was it. They only thing that I have heard a thumbs up for is the walkers.
ReplyDeleteARGH! Agreed! Everyone already answered for me, but I love putting in my two cents. Is this woman for real? She wants money-the stroller company wants money and it is apparent they are none too bright about achon. Amelia, like Destini said, needs to push herself and her muscles and she will! Tell the therapist-hands off with the equipment. Sturdy back strollers are all you need. Nothing more. ARGH! again. I am mad at her for backing you against a wall. Hugs sweetie!
ReplyDeleteAgreed... Ami does NOT need all of this crap! Even Sonya does not need all this crap for her disability! Like Kim said, a sturdy back stroller will do fine. Geez, I can't imagine how stressed you must feel! Sending you hugs!
ReplyDeleteThank you all for great input! It makes me so much stronger facing this persuasive PT! NOw I know what we need and want. What would I do without you? Mimi says - thank you sweet aunties! :-))))))
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