We are done with the tape thing

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. Our last physical therapy appointment Bella got some special tape to see if it would help lessen the pains in the bottom of her feet.

Mild cerebral palsy treatments are why we are going to physical therapy every Tuesday.

 

How it feels for me as a mom to see her in pain is exhausting and heartbreaking to have to take any child to so many doctors visits and watch her cry at night while all I can do is hug and tell her we will make it though.

Not every visit is heartbreaking even this visit we both were totally fine with the idea of the type on her feet and excited to start a new treatment but the first time we added the tape Bella was up all night crying in pain from a sensory meltdown and panic attack.

I had to have my husband call the school at 130 am which sometimes we often have to do and say please excuse Bella absent in the am as she didn't get enough sleep and is in major pain.

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This is the tape that we had picked up the same one the doctor showed us but then we had to try another brand and foud Meijers brand seem to do the trick

 

I rub her feet with lotions and do my magical reflexology and mixes to help soothe and ease her pains. The backfen she is on at night is not even touching the pain.

The doctors are not wanting to up the med or change it until we do and try all other options and I am in agreement with them because nobody likes to add more meds to a child's body.  So we do baths soaks and lotions and heating pads.

I look online late at night sometimes until 3 am not sleeping learning all I can about mild cerebral palsy because let's be honest if it was major cereal plasby or another form of it I would visibly see it and understand.

  It broke my heart tonight listening to her sob in tears saying, mom, I just want to be done with this type thing.

Begging to hurry the ankle braces process up but insurance issues and process get in the way

I told her I understand and I hear you but this is something we have to try and do first so we can see if it helps and if it does not help we can try other things. T

rial and error test subjects not knowing it all is scary and frustrating and for my 10-year-old to feel like mom what's the point of the tape is not helping I have to go in and say look we attempted what's next.

Not ever knowing what is next is not fun.

Treatment for this like everything else is unique and not two people with cp are the same shocker neither are no two people with 22q and here I am alone in a new world trying to find answers to treatments that will help. 

Bella being 10 has a lot going on in her body as she is not little anymore and is growing up and soon will be a teen. I have to adjust to new things every time I turn around and so does she. Bella has a lot of growing going on, puberty happing in droves and then we have day to day things like attending school and keeping up with all of the work forms the doctors visits Bella misses out on.

Trying to always put on my brave face It is a lot of pressure and sometimes I feel like what if we homeschooled then I wouldn't get asked from so many people why does she need to have so many doctors visits she looks acts just like the other kids. If I hear that one more time I just might explode. 

I remember we have had a lot more visits then once a week we had seizures and all that is in between but this tape thing something so small and may not even be helpful is what is getting the better of us tonight. 

I need to put big girl undies on and suck it up buttercup because we all have issues.

I hold back my tears I told Bella the braces will come in time and that we are wanting to see if the tape will help ease some of the pains she has at night from the spasms of cerebral palsy spastic issues. Since her feet pronate we have discovered the tightness is not only in her legs but also on her feet.   I didn't tell Bella that I too want to be done with this tape thing

Bella, as you know, is a runner we did a 5k race last May and is very active during playtime outside and with her friends so she is busy on her feet.

The first attempt at putting the tape on Bella had a sensory meltdown on top of a panic attack

over the tape. Tape sensory issue so we bought a Meijers brand of tape and she likes it a lot better than the more expensive brand name tape.

Who knew there would be such a different but Bella does. The fact that Bella poor feet couldn't handle even just a little bit of the more expensive tape and had no issue with the Meijers brand tape tells me that the tape she using isn't really helping at all but then she said it does help a bit and her feet feel great after the ordeal of adjusting the tape and cutting the tape down into pieces.

I don't know a single person out there who has to put tape on the bottom of their kid's feet but I would love to hear what brands colors and textures of tape are out there that have been successful. In the cerebral palsy world, I am a newbie in the fact I am still adjusting to this new normal for us and that nothing that the 22q world in terms of treatments has helped we been there done that.

The cerebral palsy world I know the extremes of people in wheelchairs or using canes to walk around. Bella while Bella looks and appears like any other child. My Bella is in a world where she does not fit a mold. I have to adjust my knowledge and understanding from the 22q mentally to the cerebral palsy mentally Bella was born looking appearing and acting like any other typical child but then Bella is full of all these minor health issues where her needs are special and she is unique.