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.

 

 

shoe inserts called Chipmuncks?

Hello everyone

Bella wanted to share that she been wearing her Inserts for a while now and they are Chickmuncks. They look like they are apart of her shoe and no one needs to know she is wearing them.

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Bella had to break them in for the first few days but she is doing amazing and the inserts are helping her walk better. Bella insert help her with her running wearing her inserts has helped with her running as there is less impact when she lands on her feet the inserts absorb the sock form the feet hitting the ground when she runs.  I have noticed how proud and tall she is walking around in them a big change over something so tiny I guess that's why they call them chickmuncks. As you can see from the picture when the inserts are in you can not notice a thing different about Bella or her shoes.

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Children's special health covers one pair but the cost for these are inexpensive  I found a pair online here   https://cascadedafo.com/products/chipmunk

 

 

 

The shoes we buy for Bella we get at a place locally called little chicks that link is here.

https://www.facebook.com/LittleChickShoeShopInc/ here is their Facebook page I was not able to find their website.

Bella needs a high arch shoe and the New balance line is perfect for her feet issues. Since we invested in a great pair of shoes and the inserts there has been a lot less ankle feet pain. The Physical therapist we took Bella too a few years ago suggested that we shop at little chicks and now we never buy her shoes any where else.

The price is a bit more then what we would pay for a 10 year olds shoes because she out grows them so fast but the store gives a year warrenty on wear and tear I love their customer service small store so they provide a lot of one on one they are there to help pick out the perfect pair of shoes for your child in your budget. New balance are a bit higher end in the price range but a quality shoe makes all the difference. I buy two pairs of shoes for her at a time. They even put in regular inserts but because Bella now has these Afo inserts we dont need to use the older pair. When Bella was younger Bella had to wear leg braces and over time she has grown has done a ton of Ot and Pt and is doing so much better with treatment than with out treatment. The only problem is we have to miss school one day a week in order to attend these  visits for treatment. It has been a struggle staying on top of home work but we have manage to do okay and in the end her physical health has been improving. Bella still has some leg pains but over time and as we continue to do Ot and Pt things are working out for Bella really well with backflen being a huge help for night time leg pains Bella used to wake up crying and screaming in pain. Sometimes she still does but with some lotion and rubbing the knots out has helped. Bella wanted to do a video for you guys of us working the knots out but I don't know how well I can hold a camera and rub her knots in her legs out.

I wanted to share because leg pains and 22q is common among some of the kids I mentor and and a few parents online have wanted to know what we do for Bella and her leg pains. Bella leg pains are caused from a mild form of Cp you can learn about cp here on this website.

http://yourcpf.org/

Bella has a mild form of spastic cp that effects her lower legs.

on top of the cp she has 22q11.2 deletion syndrome. DiGeorge syndrome and a few other health issues that go along with having a piece of genetic material missing

to learn what 22q is check out the 22q foundation webpage were we have been featured on a few dozen times.

http://22qfamilyfoundation.org/

We are always willing to talk open about any issues and answer any questions you may have.

Thank you for reading and letting Bella share the inserts she has she has a desire to help other kids like I do who have 22q together we are getting the word out one page view at a time

until next time friends be kind to each other always

 

 

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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If Bella can you can too! 22q can do. One foot in front of the other

This is Bella finishing the 5k race back in May.

Hello every one

I am catching up on sharing all the fun videos we shared.

After Bella was born and she put one foot in front of the other there has been no stopping her from reaching her goals. Bella inspires me and shows me how to be myself and the best version of myself.

Bella was born to inspire others.

This girl pushed me to run a 5k race and I have health conditions where the doctors said do not run.

I ran and I made it. I trained, I puked, I even cried and wondered what was I thinking I'm too fluffy and round to do this. I did it. I ran the race with her miles a head of me but I finished. 

Bella says train hard and you can too. 

Empowerment,  breathing and focus is how we did it. 

one step at a time Bella and I work as a team towards our goals.

Did you remembe this is the same Bella who not only has 22q11.2 deletion syndrome but also a mild form of cerebral palsy and wears leg braces at night for mild spastic cerebral palsy? Invisible illness can and will do. 

If you like this video like, thumbs up, comment and subscribe.