these kids are not all the same in our family our story is different then these typical 22q common leg problems and are not megasium deficiency or calcium cramps in her legs they are leg spasms and tight muscles in her muscles from mild cp complicated birth issues I have 22q as well so that how the cp diagonses and 22q l when I gave birth as I had lots of complications and no support other then my family at the time she was born no one knew how an adult with digeorge would effect a child too. Bella does sleep well now but it used to be nightmare with sleeping low iron and dr just not grasping any of what my having 22q would effect during labor. Bella is taking a medication for the spasms i wont say which med but muscle relaxer at a low dose and has special shoe inserts which help lesson the inmact she also does pt excercises at home and we streach followed with a bath and leg massage with lotions rubbing knots out as I find them in her legs we use heating pads or ice as needed way more good days then pain days but it was with a lot of dr visits missed school time and extea love and support staying active helps and she sleeps soundly especially when she runs outside in the fresh air It taken years to get this far she mostly does a lot of self care on her own now. Just have to stick with consitent routine and structure. Being active is the very best thing to keep leg loose and build endurance With my child it not the common leg pains 3 siblings and my self have 22q we faced a lot of these challanges alone
Happy first day back to school everyone.
Bella had such a fun relaxing summer she is a tad annoyed that it is over but glad that the first day of school is warm and sun was shining bright. When I took this photo it was just before the sun was fully up. We wake up around 5:30 am. I did her hair the night before isn't it cute there is a super cute braid in the back. Here in Michigan it is going to be 88 degrees so we decided to keep her first day of back to school look simple and easy. The lunch bag is one of the wins I just won in a sweep contest it's a cooler bag which I love it will keep Bella's lunch nice and cold which is a good thing it will be 88 degrees later on. The school supplies are just the general school supplies we didn't have to go all out as we had most of the stuff already for her.
What Bella is wearing. The top Go Blue (Yay Michigan) the pants are justice and the shoes are new balance with her foot inserts see post about those here https://www.mommiesquietplace.com/isabellasjourney/2018/4/21/shoe-inserts-called-chipmuncks
and the glasses are Nike from last year (before their crazy pr issues) see trending topics on Twitter about that. For Bella's hair we just did a simple cute braid in the back. and a bit of lip gloss to prevent dry lips and help with a boost of self confidence.
The Go blue top is from the gift shop at the c.s motts children's hospital where we visit at least once or twice a year. Our most recent visit went well and we go back again in Nov for Bella's sleep study . This will help decided if we are going to finally go a head and take adenoids and tonsils out as we don't think Bella needs to have the vpi surgery. She is doing so well with her scores and no one really notices her speech differences unless I point it out. She still has body temp regulator issues and doing well as long as we keep on top of it all.
I have her appointments set up already back to back on Tuesday so she returns to school Tuesday afternoons except for this first week of school we are keeping it super simple and I plan no appointments. We did pretty well with them this summer. Bella graduated out of Ot and speech. Now all we have is psychology for the adhd panic anxiety treatment and working on coping skills for organizing at school and leg pains. Then she has pt which help with the leg pains. The fitbit on her wrist helps us track her sleep steps and calories burn so we can stay on top of how she is physically doing sometimes it's easier to tell by looking at the fitbit dashboard then looking into the reactions she has and play the guessing game. We have a case manager in the doctors office who is helping with her care as well now which takes a bit of a load of from my plate.
I am so looking forward to this year. It is Bella's last year in elementary school and she get's to sit on the back of the bus.
My big girl is all grown up! She is the last Ripsam kid in school her siblings all 3 have graduated high school and it's just her left. I'm so proud of how far she has come
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.
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 ?