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. 

 

Pain Awareness Month-Bellas mild Cp story

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It’s September, which means Pain Awareness Month is in full swing. Pain awareness is something my Bella knows all too well. Bella has a mild form of spastic cerebral palsy. Yesterday we had multiple doctors appointments and one of those appointments was physical therapy.

 while you may want to get involved and help educate people about the issues facing the community of other pain sufferers it can be surprisingly difficult to find meaningful ways to help — especially ones that aren’t too expensive, time-consuming or require you to be an expert in policy and advocacy strategy which I am trained in but that is for a different post. 

Aside from telling friends or writing a Facebook status, what else can you do to support Pain Awareness Month? Every person with chronic pain deserves to have their voice heard so this is my way of getting our pain story out and for other to hear Bella's voice. 

I am speaking up for her on her behalf.  I ask that if you want to help others first start by sharing this post let Bella 10-year-old voice get heard. Then like and comment to help get this post ranked higher on the google spear. Lets let Bella know we all got her back.

I had her back yesterday I was there taking her to her doctor's visits and helping her deal with the challenge of missing her friends and teachers at school. I am there helping her catch up on her missed class assignments which we didn't get in her backpack. I am there pushing and being her biggest cheerleader. I am always there. Adam her father is there too but I took her to this appointment today just her and I. We had much needed one on one mommy daughter time and we even made the day kind of fun she had smoothies and I had coffee at Bigby. If you want to help you can send us your Bigby coupons for buy one get one our email is on the contact page. You can also donate gift cards to us for snacks and lunches for our appointments as people have asked how can we help others in pain.

Helping with the cost of gas to and from appointments and helping with food and snacks helps or even providing food and snacks helps. I had that idea while we were at Bigby knowing that hey this stuff is going to add up for 12 appointment visits. We are open to accepting gift cards just send us details and such in the contact page.

I'm even considering having a donate button that says buy me coffee on my page. I would look at it as a way to keep this website running that's another way to help spread awareness is by having your own website. The cost of this website is not much in fact it cost about 3 trips to BigBy and I keep paying for the website and running it because I want our pain to do some good in the world. 

The goals of physical therapy are to decrease Bellas leg pains from the spasms she often gets that keep her up at night.  Originally attending physical therapy to get a full assessment of her tightness of her legs and the strength of her arms we discovered that Bella foot is not flat but has a high arch and rotates so we are getting her ankle braces soon.

The doctors visits it does requires prior authorization on her insurance.  Bella has united community health plan Medicaid and children's special health insurance. This ordeal is going to make us see the pain specialist that diagnosed Bella with cerebral palsy which is in Ann Arbor. We are hoping we can get the doctor to just fax over an approved letter to the insurance. Decreasing pain is what we are working on in the first 8 weeks of treatment. 

The medically needed doctor's visits will require Bella to miss 12 days of school. Just for physical therapy. We also are doing speech and psychology which is another 8 weeks of treatment meaning 12 sessions meaning 12 days missed from school.

If you can do the math we are at 24 days missed of school if I have to drag these appointments out one after the next and space them out on different days which I am lucky that I can get all of these appointments set so they are back to back. 

Yesterday, for example, we had speech set at 10:00 am and then we had psychology at 2:00 pm and then we had physical therapy at 3:00 pm.  From 11:00 am until 2:00 pm we hung around the hospital which is where her appointments were at a rehabilitation hospital in Grand Rapids Michigan. A 45-minute drive from my home which means we had to use Medicaid transportation services to get us to and from. Our drop off time was 9:30 so we left our house at 8:30 am. We left the hospital to come back home at 4:30 pm.

I spent 20 dollars on lunch 10 for her and 10 for me. Thankfully the food at the hospital did not cost that much and they have daily specials.  The cost of these appointments are covered by the insurance but we had to play a word game to make sure they matched Bella's diagnosis one miss word and it would have been denied.  I am willing to play the word game with insurance in order to help decrease the leg pains for my daughter.

During the appointments in physical therapy, the physical therapist asked Bella what her pain levels get to when she is in pain. Level 10 sometimes I think it is even higher than that. She wakes up crying in pain often inconsolable and I have to watch her while I run a hot bath, get the heating pad and rub the knots out from her legs and feet.  

Other times her legs are just tired from all of the runnings she does. Bella takes backflen to help decrease some of the pain and to allow her mussels to relax and help her sleep she also is given ib profin.  The side effects of the Backflen is she sleeps so deeply she pees the bed we are working on waking her up at 12 to go pee and that seems to help with some of the bed wetting.

There are so many pieces to the pain puzzle which involved therapy and meds and exercises that those things keep us busy after school. I only have 4 hours with her at night I need to have some of this dealt with at the school however it not educational this is all medically needed. We do our best and she is not always in pain but when she is she makes us aware.

 I am writing this post for Pain Awareness Month to help Bella and others like her. I myself have pains of my own from having gasteroparies but I wanted to share about Bella in this post to help people see that Bella looks like the typical normie child but at night she in secret away from others view does struggle with pain. This post goes out to those of us who struggle with pain in secret let's reach out and share our stories to offer hope for others.

Thank you for reading. I want to know do you deal with pain? how do you deal with the pains you have or your child have? Write in the comments below and let me know your story of pain. Until next time friends I pray you are pain free.  If you want to donate and buy me a coffee or Bella some smoothies I email me at mommiesquietplace@outlook.com

click the link below to show your support for pain suffers on your Facebook profile

tps://twibbon.com/Support/pam17/

You can also help by following the pain assocation websites

American Chronic Pain Association

U.S. Pain Foundation

Chronic Pain Research Alliance

International Pain Foundation

  Another way to help is to shop for your cause. Wear a T-shirt, bracelet or pin that raises awareness of chronic pain and the condition you live with. Etsy features designers like Spoonspirations that make chronic illness-themed items. Many nonprofits also sell apparel, like the National Fibromyalgia Association, Reflex Sympathetic Dystrophy Syndrome Association, Global Genes, and National Fibromyalgia and Chronic Pain Association. The profits from these items go back to the cause, so it’s a win-win.

In order to help people understand the chronic pain patient’s perspective, we need to amplify the voices of the warriors who speak up.

For example by sharing Bellas story and my story online you are sharing a different prespective and view

Like, comment and share your friends post like you would a celebrity post.

 

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