22q11.2 deletion Bella Ripsam videos our journey with 22q
Do you often go to doctor visits with your children? Do you do more then one doctor visit at a time to make sure your kid is not missing out on so much school? Do you like watching cute kids share their stories on YouTube? If so you are going to love Bella's vblog series.
Bella shares what we do at her doctor visits and she shares what she feels and thinks in recaps after each visit.
We have been attending Speech, Psychology and Physical Therapy appointments every Tuesday for Bella.
The speech was to help with the programmatic language and language processing disorder she has I am happy to report Bella no longer needs speech therapy and we are just monitoring her with consult at school
The psychology appointments we are using coping cat skills and stop and think lessons for Bella. Bella has both physical and emotional Adhd on top of Anxiety we have been very successful in behavior modifications with breath and relax at bed time as well as ticket reward system for positive behavior reinforcement I have a reward bucket filled with goodies from the dollar tree, and other stores clearance section filled with goodies she can cash in tickets for prizes. Bed time has no longer been a power struggle or a fight and she is sleeping a lot better. When Bella sleeps better she is able to handle herself better and does better in school. .
Physical therapy is where we struggle we are trying so hard to reduce Bella leg pains we are even going from leg braces at night to ankle braces I am in the process of getting those appointments set up. Bella is getting great at coping with the pains at night and we use some tricks lotions, massages, and heating pad but Bella also has a mild form of cerebral palsy which cause her legs to spasm at night so she is taking a med to help with that. I am careful what I say about this stuff because I would hate for others to do what we are doing with what works for us because 22q treatments are tailored to each person individually no two people with it have it effect them in the same say just like with cerebral palsy you have the extreme forms of cp and then you have the mild forms of cp like what Bella has. In 22q it works much the same way based off how much or how little of a deletion each person with 22q has. A deletion is in her blood you can't tell she has 22q like you can tell with a person who has downs syndrome so Bella sometimes falls though those health care cracks. Bella does not have autism or bipolar or skito like traits neither do I. We both have 22q and it effects us both very different ways .I wanted to create this video blog series to share what life is like for us now that Bella is 10 and is in pre puberty.
By the way puberty in girls sucks the pre teen drama can end any day now. The power struggle is real sometimes. You can't see that in the videos or on my post but trust me they happen and that's partly why we also deal with her anxiety issues and such in the way we do so she has coping skills as most kids don't know what a coping skill is neither do some adults.
I rambled on enough but I wanted to dust my blog off and say thank you to everyone who has signed up and subscribed and supported us over the years. Don't forget to check out the videos below and subscribe to our Youtube channel.
May everyone have a blessed holiday and remember we have more struggles with health challenges and I want to encourage all of you out there raising your own 22q people to be mindful relax and rest during this holiday season between the holiday invites and dont feel like you have to say yes to every invite. You have different needs then those who don't and making sure everything is perfect like us moms love to do for our kids is going to make us batty crazy. Enjoy putting up the tree we are doing ours this weekend as we had so many appointments during the week I am playing catch up on house work and laundry. Pause and focus on spending time with each other rather and remember the reason for the season
Stay warm and blessed my friends and enjoy the videos below
https://www.youtube.com/watch?v=nBLFw32hS38 Vblog number 1
https://www.youtube.com/watch?v=XmMMy-K0HH4 vblog number 2
https://www.youtube.com/watch?v=cWTk9Z8rOOY vblog number 3
https://www.youtube.com/watch?v=B9kQzktsMRo vblog number 4
https://www.youtube.com/watch?v=YH4TfaV9C2g Our 22q11.2 deletion syndrome awareness video