Tuesday, August 22, 2017

Looking Back at the In Betweens and Today

I try to balance the positives and negatives. Last post compiled Mia's awesome experiences since last fall. Today I will share the times in between those that have seemed to come to a head this summer.

When Mia started third grade in September she was gaining strength by leaps and bounds. She participated in the Empire Games for the Physically challenged and did amazing. In November, she had a polyp removed from her bladder which was a simple outpatient surgery. Unfortunately, no matter how small the procedure, Mia always has slight set backs so we weren't surprised that she was feeling sluggish and not herself. 

Getting ready for surgery.

However, that seemed to continue much longer than it should have. She would leave PE class complaining her legs hurt. She would come to my room crying (lucky for both of us I am now in her school - thanks PN!). After school she was exhausted and her school team agreed that she was just "off". Concerned, her orthopedic surgeon ordered x-rays of her legs and hips, blood work and an MRI of her lumbar spine. With the exception of an additional curve now in her thoracic spine, which wouldn't be the cause of her leg pain, everything looked great!

Smile for the MRI!
As the school year continued, academics became more challenging and Mia continued to complain of not feeling well. In addition, she was getting chronic UTIs, about one every 4-6 weeks. All of this increased her anxiety about her school and health. She would leave class multiple times throughout the day and it became increasingly difficult to determine how much was anxiety and avoidance verses not feeling well.

When she started complaining of headaches, the doctor ordered another MRI and shunt series to make sure her shunt was functioning correctly. Once again everything look great. The MRI did show a sinus infection so she was treated for that. 

Third grade ended with a lot of hard work of trying to get through academics, emotions and staying healthy! We were so excited for summer thinking we could at least take a mental break from the stress of academics and try to recharge. That excitement was short lived.  A week after school ended, June 28th, Mia had a UTI that landed her in the doctor's office with a 104.6 fever and vomiting.

Waiting for her fever to break at the Pediatrician's Office
She was treated with oral antibiotics and only two weeks after finishing those, her same symptoms began. On July 18th they sent us to emergency where she was later admitted for a kidney infection. That, of course, was the S.O.S. post of prayers so she could be the flower girl which did happen!!! We consulted with Mia's urologist, came up with a plan and finished another round of antibiotics. This Saturday we took the kids to the family camp and Mia spiked a fever, just two weeks after finishing her antibiotics. Her and I left for emergency and we admitted once again.

Dave trying to bring her fever down

Resting is difficult in the hospital

So, here we are. They say there is a first time for everything but there are some firsts that I prefer to skip, like seeing your child's temperature reach 105.2. There are many unpleasant stories from our hospital stays but it really doesn't do me any good to relive those so let me just say that this summer has definitely taken a toll on our family. Mia's anxiety has reached a whole new level. Thankfully, she began seeing a psychologist in May. Seeing Mia so sick has effected Gabriella so much that she has started becoming physically sick every time she gets nervous about Mia. Nick and Sam have tried really hard to keep Gabriella in a better place while I am here with Mia and Dave goes to work. Of course our family and friends have been our rock, as usual.

I have updated the whole year in just a few posts. I began with sharing the positive and ended with the not so positive. Overall, we have been thankful. With Mia's complex health, we know things could be worse and we try to keep our hurdles in perspective. We have an amazing school and medical team that help her and us every step of the way. Unfortunately, we are in a low but pray our high will come soon!

Moving forward, we still have a lot of work to do to get Mia physically mentally healthy as well as keeping her brother and sisters in a good mental place. I will try to be more diligent in updating the blog but know I cannot make any promises!


HBalsamo said...

Sending continued prayers and strength to all. 💚🙏🏻💪🏻💛

Sarah Powers said...

Think of you and praying for you always

Patricia Terra said...

You are both amazing Parents. Sending you all prayers of strength....

Holly Wager said...

Always praying for the beautiful flower girl Mia ❤

Pamela McCormick said...

I am thinking of you and your family
I am holly Huber sister in law we met at the wedding
Pam and Joe McCormick
If I can help in any way holly has my number please let me know
As you know nurse to nurse it takes a village
Best wishes

cfallone said...

Thank you so much Pam! I remember who you are. That is so very sweet of you. Dave and I felt very fortunate to have been at such an awesome table.

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