St Patrick's Day from Bella

Hello everyone

Bella wanted me to share one of our photos we took last St Patrick day

I don’t usually do cute short and sweet posts but I thought I would share an adorable photo of Bella since everyone loves Bella photos over on my fb page

Happy Saint Patty’s day and remember march is Cerebral Palsy awareness month

Bella on top of the 22q has a mild form of lower spastic cp in her legs the color for cp is green as well

Cp dose not stop bella she is signed up for girls on the run and loves running that 5k race this will be her last year in girls on the run as she’s a 5th grader and moving on to middle school next year

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22q and leg pains

 Bella is in so much pain she was crying and screaming. I had to put her in the tub and use Epson salts. Then I rubbed her legs with bengay cream and worked out her spasms

we see the pain specialist on the 23 and she has pool therapy again so that will help give us more of a direction to go then what we are currently doing. I am hoping that we will adjust and we can get a med added or her current med which is Backflen at a low dose.

We kept her active but with all the cold weather she had to stay inside a lot and has not had a lot of changes to run and get out and play so the one day she was able to go outside it was 3 degrees now it is 20 I thought it would be a good idea to let her go outside burn her energy off and work her legs. The specialist say that her legs being active will help so that's what I was hoping. That is now what happen tonight. Not at all.

Today she went sledding with her friends and came in and she was super sore all the climbing up and down the hills and running around in the snow in her boots. Her boots are insulated with the memory foam and high arch support water proof all that jazz. she has excellent snow gear coat, mittens, scarf, hat and gloves and is bundled up like a cute Eskimo she was super excited in a good mood.  Bella has mention leg pains over the weekend and during the week a few times from when she got home from school but nothing like this. Bella was moody and her legs were so sore she cried so hard. I felt so helpless. I'm not sure how my husband feels about any of this but we went to dinner to help her relax get her mind off it for a bit which it did and then we went to Wallgreens to pick up her adhd medication and some more bengay cream and epson salts for a nice bubble bath with the leg and back rub to follow. See this is the only treatment plan we have been given to by doctors so far.

The thing that sucks is...

I have to keep her home tomorrow there is no way she will cope at school with how much pain she is in. She finally fell a sleep next to me watching Netflix with me on my laptop.  Bella begged to stay home with how much she hurt and yes she missed school but those are for her medical appoitments just for treatment of her leg pains that I am talking about right here in this blog post. I wish I had a magic wand and could take away her leg pains. I wish I had the answers and I wish when I bring this up with others that I didn't hear do megasium or this or blah that I mean she is ten don't you think we have done it all been there done that by now. Even iron tablets and such oh and my favorite have her just drink water before bed. Really these are cp spasms they are not going to go away with a pill or a little leg rub. I would love to be able to prevent the pain or at the very least have something we can give her at her age that will work well to help her. What ever it is I am doing so far it is helping but it is not taking it away and making her better. Bella even started to ask about what it is that makes her a little different from some of the other kids in her class. Bella said last week she was tired of being clumbsy.

Don't get me wrong we have a ton of good moments but these leg pains have been here since she was born they have led up some times and some nights there is no pain but latley her leg pains have been a level ten with the weather changes from extreme cold of 3 to tonight temp of 20.

Having cerebral palsy and 22q is not easy for anyone and I can't imagine all Bella thinks about all of it Having the pressure to keep up with her school work and doing these appointments poor kido just went outside to do typical fun kid things in the snow and was in so much pain.

It took a bubble bath (thank you mr bubbles) it also took epson salts dr teal is the best, it took bengay cream which smells they gotta fix that so kidos who need it can use it with out saying pew it stinks like peppermint.  I had a heading pad and blankets on her legs for weight and lots' of snuggling and Netflix. 10 pm and she is sound a sleep.

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I am looking very much forward to her appointment on the 23 with the pain doctor and her pool therapy session these much needed medical appointments help her way more then anything else ever could. I am hopeful this post can help others who are going though the same things at night time. kudos to all the other moms and dads and parent figures who are up at night with kids with sever leg pains weather it's from cp (cerebral Palsy leg spams) or 22q issues or in Bella case both. The 22q will always amplfy anything else.

until next time friends have a blessed night sleep and may you find comfort in the fact you are not alone and not everything is all sun shine and roses in the Ripsam house hold.

This is our truth the good bad and the painful

 

tell me what's your truth? Do you deal with leg pains too ?

 

 

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.