Happy Saint Patrick's Day Youtube video.

 

Happy Saint Patrick Day everyone

It feels like it has been ages since I wrote an actual blog post.

If you been following along on social media we were sick all of us for Dec, Jan and Feb we had so many missed days of school.

Bella had more doctors visits then I ever care for her to have and and even ordered Bella's orthopedic shoe inserts.

These doctors appointments are what keeps her doing as well as she has no matter how much you can say you know what 22q is if you don't attend these appointments take a child to as many doctors as we do I mean she has one doctor for every body part and as much as I wish I was exaggerating I am not when I say from head to toe Bella has a specialist. 

when you are missing pieces of your Dna you have to stay on top of it all and it's not easy. Sometimes it is a full time job. The paperwork the back and forth to doctors. Trying to figure out meals and plan family events is not as simple as not having these doctor visits. keeping her grades up is not easy it takes an entire team. 

I personally thank everyone who goes out of their way to help Bella and has Bella's best interests both physically and emotionally as those are the areas she struggles in not just educationally.

Lot's of aqua therapy, Physical therapy, Psychology and we are starting up with Occupational therapy. All of this at a rehab hospital and all of this in the mix of Bella getting the flu or picking up something this winter each and every time I got her better it seems as though she would look at another sick kid at school and pick something else up. It was never ending.

We raised $605 for the American Heart Association with the help of some of my friends and our supporters online. Which I want to say that Bella class is top earners and they earned  a Wii party. I only wish we had a few more supporters locally. 

With family scattered between mine in Toronto and Adam's family in fl we are doing this on our own for the most part and with out respite or an aid. We have a few church friends we can call on and I am forever greatful for that and their friendships. 

Girls on the run has started back up and we both are training for a 5k race you might have seen my awful times I posted on Instagram. 

I just want to get back into shape tone up drop a few pounds and complete the 5k with out coming in almost dead last. 

Last year we did the race I came in so far behind infact Bella was done 30 minutes a head of me. That's how slow I was at running. I more like jogged and walked the 5k.

This year I want to be just a little faster. I am using my fitbit and logging in my food tracking my sleep and eating habits. Adam has even joined in on the diet plan he has to watch his calories and loose weight too. All this while Bella has to some how gain weight. She eats and burns off her calories fast like a runner. 

Even while Bella has struggles with leg pains from the cerebral Palsy and the other issues we are dealing with that come with the 22q we are moving along forward with treatments.

Bella struggles with loud sounds and the stress of school has started to weigh in on her trying to catch up with school work because we have to attend these appointments every Tuesday which we have been doing since September. With her illness she manage to have 25 extra absences but a doctors note and managing to some how keep sanity.

We wanted to update everyone along the way but there was not enough hours in a day.

As you might have seen on Instagram we have a new couch and I finally got a dslr Camera Feb 10 was my birthday and Feb 23 was our 13 year anniversary of the day Adam and I fist met.

As a thank you to all of you who supported Bella in her Hoops for heart we made a Happy Saint Patrick's Day Video see video here . https://youtu.be/iRcCXNGbdDY

For dinner we are making corn beef and cabbage.

I will leave you guys with my favorite Saint Patrick's day quote.

“Christ beside me, Christ before me, Christ behind me, Christ within me, Christ beneath me, Christ above me.” -St. Patrick

what have you been up to? What is your favorite Saint Patricks Day quote?

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.