- Pregnancy
- Baby & Toddler
- Parents
- Getting Pregnant
- Baby Names
- Product Reviews
-
Registry
- Community
-
More
Want a personalized experience?
Download the free app
Special Needs
laurding
member
equipment frustration...
laurding
member
Background: Our daughter was born with hydrocephalus/ventriculamegaly. She doesn't have a shunt, but still experiences some dev. delays. She is just over 14 months.
Our PT suggested that we get a Kimba because she isn't crawling yet and we have no idea if she will be able to walk or not. So we put a request through with insurance and we are waiting to hear back. In the meantime, we bought a new portable stroller that sits upright and she is doing well with it. Tonight, the PT said that we need to figure out what to do with the Kimba and if we want it or not.
I know that our daughter is amazing and I don't want to expect the worst, but there is a very real possibility that she will not be walking when she is 3 and headed to preschool, which is why we put the request through with insurance.
So, tonight, when the PT said that we have to decide on the Kimba, I got frustrated. She is the only person that we really have to give us direction regarding equipment and she keeps changing her mind.
Suggestions? I know we have to make the decision, but I feel like I am putting to much clout in one person's opinions. What doctor or professional could help with this? DD sees Opthamology, neurosurgery and genetics. Am I missing something?
This discussion has been closed.
Re: equipment frustration...
To me, that's weird. A Kimba is fine, but if she's 14 months and sitting well in a regular stroller, why would she need a Kimba right now? Wheelchairs/adaptive strollers do seem to take quite a bit of time to order, but she's got a LONG time before she's 3. Even if she's not walking independently at 3, she may not need a chair for preschool.
No one has ever spoken with us about a chair. My son sits well enough in a regular stroller, it hasn't been an issue. He started 4 pt crawling (slowly) at 18 months and is now walking independently for short distances at 3.5. He's in a community preschool and doing quite well. He's been in playgroups since 2 when he was just starting to use a reverse walker. We will probably leave a stroller there as it gets warmer since they might take the kids to a local park. He might need a wheelchair eventually for longer distances, but we'll revisit that as we get closer to K when they really need to be more independent.
I would try to find a PM&R/rehab/physiatrist to join her team...that's who prescribes DSs orthotics and walker...then we work with his PT to order them. I think you could safely wait until 2.5 before you'd need to order a wheelchair for preschool at 3, even with how long it takes.
14mos seems early to be having someone question whether or not a wheelchair is going to be needed, especially if 1. she is doing ok in a stroller and 2. she isn't close to going to preschool.
DS2 (almost 3.5) has a wheelchair. He only sits via W sitting, 4pt crawls, does a little bit of cruising, and uses a walker (although not well) for short distances. FWIW, we still do not know if he will walk independently or not however, I do feel that he will need a wheelchair at least for long distances for the remainder of his life. We got the wheelchair mainly for preschool (which he just started yesterday) because he does not have the endurance to walk from his classroom to say the cafeteria. Our PT suggested getting the wheelchair about a year ago because "they aren't going to carry your child in school". Timewise, DS2 was fitted for his wheelchair in April or May and we received it in late August. We don't leave it at school because we use it for long distance type purposes (zoo, mall, doctor office, etc) but we just made the switch recently to not really using the stroller anymore (he doesn't sit the best in a regular umbrella stroller anyway).
We don't see a physiatrist so I can't comment whether that is place for a 2nd opinion or anything (I'm not exactly sure what they do to be honest). Overall, I would put off getting something at her age and wait until she gets closer to preschool age.