Endurance building

By Amanda Ripsam

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Lessons I learn while training for my second 5k with my 11 year old daughter.

Building endurance

I'm once again signed up as a community runner and decided to train along with Bella. All season we kept competing over who has more miles in the week. You might have seen a work out post here or there. See photos below of the times I had on the treadmill.

All season I have been running but I can't seem to get past my own mental thoughts of what I should run in 1 mile. I have it in my mind I should run 1 mile in 10 minutes. I run 1 mile in 20 minutes. I'm grateful I am able to run a few years ago I was not even able to walk down my drive way. I had gasteroparies diagnoses and it's been a tough journey for me. Bella signed up for girls on the run last year and I did do that race with her but it took me forever to finish the race. I didn't train and thought I could skip the couch to 5k part.

This year I have trained but I fear the heat might get the better of me it supposed to be hot sunny around 75 to 80. I have to keep in mind I have come so far along and I love running with my kido. Only I hope I can keep up with the kido this year. Last year she ran so far past me and finished 40 minutes ahead of me.

Training

It has been so fun pushing each other and testing our limits and building endurance together. While Adam shakes his head and watches along the side being a big supporter cheering us on and driving us here and there. Picking us up after he gets out of work taking us out to eat as I been to tired to cook a regular meal on the days she runs because those days I have been running too.  see the images of my time on the treadmill.

The home work we had to complete at the library and catch up all of her homework while she attended her much needed medical appointment treatment she has every Tuesday.

Bella is so brave, determined and strong willed

I am raising a world changer for sure.

Today is the day the girls on the run race I posted about earlier. The work out post you have seen on my Instagram and all of Bella's laps.

Today is race day. 5k this will be Bella's second 5k race. Leg pains cp spasms, 22q nothing stops her from reaching her goals all the way to the finish It going to be hot so I been awake the past few hours up and down peeing all night.

I had to drink a ton of water to keep up with hydration I am feeling all kinds of emotions so after telling Bella go to Bed earlier she going to need a lot of sleep I can't sleep! I am up writing thinking and pondering how awesome of a daughter I have been blessed with and how lucky I am that God chose me to be her momma.

I am reminded of this scripture from the bible I know in biblical times the races were about going into battle but that's what we do with our kids who have special needs, Not all of us mommas out there can run a 5k race but We are there to battle everything from handling doctors’ visits that keep coming up to dealing with school administrator trying to push their agenda while you compete for your own.

 The power struggle of rules and being stuck in the middle. My daughter may never get student of the month because she does not meet standards that she has to be at school every single day to be there to earn it but she earns daughter of the year award she is so filled with endurance, hope and so full of amazing stories and is kind to everyone she meets.  The world needs more kindness

Sometimes crying, saying words that are not necessary mean words to get your point across kike when you stub your toes and it really hurts. While having to fight for a right to keep your kid from feeling extra pressure then she needs to is a battle you must pick sometimes and other times we can let things slide,  Sometimes we just need to have a good cry in the bathroom closet while your husband hands you a glass of wine and ask if there is anything else he can do to help. There really isn't anything anyone can do to help.

We know what our kids rights are and what they want and desire and we struggle to give them all they want our God is faithful and does the same for us he died for us on that cross and sometimes us moms can feel so worn and beat down emotionally even when times seem so stressful and there is no light at the end of the tunnel there is hope the way I deal is praying and moving on leaving it in God's control.

 

Isaiah 40:31 but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

Thank you for reading.

 

 

Cerebral Palsy & 22q11.2 deletion syndrome & Velopharyngeal Insufficiency

Bella says thank you everyone for the Birthday wishes. She said go check out our Youtube channel. Bella has been busy with running for girls on the run every Monday and Wednesday and on Tuesday we have her doctors visits,

Psychology, ot and pt. We are taking a pt break until the summer because in Pt we do pool therapy and that's a lot of physical work for her legs. Running keeps Bella's legs active and strong so her legs do not have that many spams. The leg spams still happen even on a mild mussel relaxer but we have come so far along with treatment.

This year was surly the hardest when the winter time was here with the flu we had in Michigan Bella kept picking it up every time she would get better and we sent her to school. Now things are good and all set she been doing so well. Studying for the state test at school that dreaded M step test. We have a trip to u of m booked for another nasametry and a scope. We are still trying to decided if surgery is a option we want to consider for physical over cosmetics appearances.

Bella has hypersnale speech vpi for short is what we call it

here is a link that shares a bit more about what it is it is apart of her having 22q11.2 deletion syndrome.

This is her major issue other then the leg spams from the cerebral palsy issues it effects her legs and we do treatment every Tuesday with the help of Ot pt and psychology and we will start up with pain management soon.

https://www.dystonia.org.uk/dystonic-cerebral-palsy 

The speech issues we are addressing with the craniofacial clinic at u of m we will have another test done in June to scope and nasmetry and compare last years results to this years to help to see if fat graphing an surgical option for Bella. I at this point have no desire to inject fat only to have to re do it in a few years later after it stretches.

I am hoping for a different alternative to fat graphing but Bella does not need the full repair. At this point I am thinking we might just wait it out until she is an adult but then the issue is adults get stuck with crappy insurance after they do not quality for medicade after 19 years old. I'm considering all options and keeping an open mind and seeing what the experts have to say.

here is an article I found about vpi hypersnality like what Bella has https://www.childrenshospital.vanderbilt.org/services.php?mid=7279

 

 

 

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Bella inserts Afo she used to have to wear leg braces at night now we have these cool inserts they look a lot like the regular inserts and they match her new balance really nice.  see photo above you can't even tell she has anything in her shoes. These help with impact when she walks has even helped improved her posture. Bella legs still get tired and sore and spasm happen sometime but they have come a long way over the years before where she would wake up crying and screaming in pain

Bella inserts Afo she used to have to wear leg braces at night now we have these cool inserts they look a lot like the regular inserts and they match her new balance really nice.

see photo above you can't even tell she has anything in her shoes. These help with impact when she walks has even helped improved her posture. Bella legs still get tired and sore and spasm happen sometime but they have come a long way over the years before where she would wake up crying and screaming in pain