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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