school has been out and summer fun starts

School ended for Bella June 8 it is now June 25 almost an entire month has gone by we have enjoyed many lazy summer days. I post on Instagram a few things we do such as going to a habatchi grill https://www.instagram.com/p/BjvZkJIhkZr/?taken-by=amandaripsam

I have not updated a life update because the only new thing around here has been Adam new job. It has been a perfect fit job he is an It administrator. here is a post of photos he sent of his desk at work. For fathers day we all got him something to put on his desk at work. https://www.instagram.com/p/BkLHE9eBWKu/?taken-by=amandaripsam

https://www.instagram.com/p/BkTno9ahQPL/?taken-by=amandaripsam

Bella has been enjoying her new sandels  we picked up from Amazon and you can see those here as Bella trys to ride her bike and get's frustrated because the training wheels are gone.

https://www.instagram.com/p/BkaspRShc6U/?taken-by=amandaripsam

This week is going to be dr appointment filled at the end of the month to make sure we don't have to do these appointments during school. By September the goal is to be finished with drs appointments.  Today Bella sees the psychologist she has been seeing weekly for anxiety and ADHD treatments. Bella has had homework and hasn't done it yet. We are working with a few different programs. One is mindfulness the other is coping cat system it helps her stop and think about her actions and how the other person is feeling.  This visit Bella wants to talk about her trip to the U of M C.S Mott children craniofacial clinic.

Bella knows what is going to happen I have talked about it with her and she has some concerns. Bella has some air going up her nose when she speaks and this surgery will help correct that but we need to do a ton of test and make sure we are set for surgery as last time we went surgery was set and plan but we had to cancel it as her test a camera up the nose pretty much to sum it up and keep it simple terms tested her at zero percent hypersnale. So now we are going back to have it looked at one more time to determine if this is a surgery we need to be doing.

you can see and hear Bella talk here on our Youtube channel don't forget to thumbs up it and subscribe to let us know you view it and we can give you a shutout. 

https://www.youtube.com/watch?v=wQvYlejl46Q

so as I was saying this time when we go to u of m which is Tuesday We have a hotel Book so we are spending the night and using medicaid transportation as Adam has just started this new job and taking a few days wouldn't look great on his end so we are going to have a mother daughter night. I am going to attempt to make it as fun as I can.

I have a few plans for her while we are there as long as the weather corp orates the backup plan is to order food in and have a netflix marathon. Please Michigan weather be kind to us. Bella and I have to be up and out the door by 6 am as that's when medicaid transportation will arrive. We also have a shuttle from hospital to hotel and then from the hotel to home we have medicade transportation taking us back. This is why I am a stay at home mom if I had to work full time I couldn't get Bella the top care she needs and make sure she get's the treatments completed. During the school year Bella completed speech therapy and she completed occupational therapy as well as moved from leg braces at night to orthotic inserts in her shoes see our post about her chickmunck shoe inserts.

read about Bella missing so much school here and how we kept up her grades Bella passed 4th grade with a C and dose not have to do summer school even with 46 absents total between illness and dr visit a rare genetic disorder and cerebral palsy leg spasms https://www.mommiesquietplace.com/isabellasjourney/bella-graduates-ot-completed-speech-all-while-missing-25-day

https://www.mommiesquietplace.com/isabellasjourney/2018/4/21/shoe-inserts-called-chipmuncks

It was not a easy year for sure at one point I even hid in the bathroom closet with a glass of wine because being put in the middle of all of it and having to juggle it all while hubby works was a challenge that made me even want to cry. I had been extra concern this winter was harsh when she got the flu and every one kept passing the flu back and forth then Bella had potassium scare and fevers and throwing up though it. Once a week Bella had the school call me for a migraine or panic issue when it came to correcting her homework.

Now that summer here Bella is more confident and back to herself cherry and happy. It almost makes me wish I could home school her but to be honest Bella is so much a social butterfly that homeschooling would not be good to her already damage ego. Over the school year Bella had to miss out on some fun things to catch up on her school work for missing the appointments. Bella earned top earner for hoops for heart and missed the fun assembly for the rewards the kids earned because Bella ended up having a 5th grader jump on her back and left her with a goose egg on her spine and her having cp that flair up a spasm almost nightly for a week which made her miss school because she was in that much back pain. It's finally all Better and we just deal with leg cramping and spastic pains still. I use backflen and a combo of massages that I learned to rub out the knots I order lotions and things like heating pads and rice pads to help give her some pain relief.  We attempted a tens unit but Bella's sensory issues couldn't deal with that.

Bella has become a huge fan of Amazon wish list you can see here

https://smile.amazon.com/gp/registry/wishlist/newwl/ref=nav_wishlist_lists_2

it is a combo of my wish list and Bella's wish list but Bella likes to play on her kindle and add things to the cart

I earn gift cards online sometimes that go towards Amazon gift cards Bella loves hearing go a head order something off your wish list. I don't mind because we use Amazon smile and all part of the proceeds go to Amazon smile which if you sign up for has a link that the 22q foundation uses.

over all I have to say summer is going well. I have been working on projects around my apartment we have been having fun and relaxing except for this week

This wee we have like I mention above Psychology in the afternoon, tomorrow at 6 am we leave for a over night stay at c.s motts children's hospital then we come home Wednesday. Thursday we have nothing but I will have to catch up on house work that day Friday we have Bella's 11 year check up she will need vaccinations which she does okay with but these are boaster shots and she not going to be to fond of me by Friday. I will try my best and usually I reward her with a McDonald lunch. 

I look forward to July and Aug of not having to deal with school routines. I have yet to really pull together a summer routine we just have been going with the flow both of us are more relax and enjoy fun things we get to do like going out to eat with Adam after work and seeing the movies. Last week we saw incredible 2 I loved it.

Summer movies, trips to the park, library and my attempt at a fun mommy daughter hotel stay I think this is the start of a fun summer.

I hope everyone else is having a great summer

until next time friends choose kindness.

 

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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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Afo Chickmuncks Bella's insert .jpg

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

 

 

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?