Therapy at Home

I've said it before, but a reminder about our insurance...I have been trying to get Hailey Physical, Speech and Occupational therapy for MONTHS almost a year. Right now they will allow for 12 visits and that I pay for those 12 visits out of pocket until our deductible is met. Right now our deductible is $10,000 a year and Hailey is still pending Medicaid and I haven't heard anything about Katie Beckett. With Hailey's infusion services costing us $3,000 a month just to feed her we will reach that deductible soon, but I will still only have 12 visits of therapy available to me, which is NOT enough. No where NEAR enough. So I have been doing "therapy" at home. I know I have no formal training in this, but I can't sit here with her and not try.

For Speech we use these Oral Motor "Chewies" to try and work on her facial muscles. We try and blow bubbles and we have also experimented with pudding. I put a bit of pudding on her lips and try to get her to lick it off. Your tongue has to work in order for you to talk right? We also read Hailey's favorite books that I know she knows by heart and I encourage her to say the sound of the words that come next. The words she practices that most is mom, or I should say, "MOOOOOOOMMM!"

 For Occupational and Physical therapy I often group them together. First we do our stretches, which at first was a battle, but we have a system now. I compare different things and ask Hailey if she likes that item a lot (Big stretch arms up) or a little bit?

I will put Christmas bows on her head and encourage and help her to take them off. She LOVES this and thinks it's funny. When I first started this she could barely get her hand to her nose and when she did the spasms would kick in and she'd hit herself a lot. If I guide her that happens less, but I want her to try and get a hold on her muscles. She can now take her sunglasses off her face!!

 I purchased some RING crayons at Target on clearance for $0.30 a pack and I place them on her hands and we draw. She used to love writing H for Hailey so we practice our letters, shapes and colors.

Everyday we attempt to bare weight on Hailey's legs. We sit on a little chair and scoot to the edge until her feet touch the ground. Hailey is still unable to bare weight without assistance but I have gotten her to try every day. I hold her up under her arms and she attempts the walking motion of one foot then the other. I wish I could do it more with her but with me bending over to hold her up my back starts burning pretty quick. We weighed Hailey last week and she is at 61 pounds! Yes, 4 years old and 60+ pounds! Oy!

She doesn't like being on her stomach, mostly because she can't hold her head up off the ground and she gets really upset. I get nervous because if she does try to hold up her head and loses control I don't want her to hit her face on the floor. We use the boppy a lot to do tummy time. The iPad comes in handy when doing this. We've used the iPad to "Play Piano" and Hailey really likes that.

We finally got the rifton stander so that will help Hailey to put weight on her legs safely. I am fully aware that ever seeing Hailey walk again is probably never going to happen so I don't do these things with any expectations. I just want her to use what muscles she has. I think if she keeps trying to control her muscles maybe the spasms will decrease and she'll be in less pain. She's a tough cookie and as long as we do all these things as "playtime" she participates.

With insurance denying Hailey the therapies that she needs I feel like they are saying, "You're child has a terminal illness. She's not going to get better. Why would we pay for something that isn't going to make a difference?" Well I feel like it's going to make a difference and I will keep fighting them to give us more therapy and I will keep on working with Hailey on my own.