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!








Tuesday, August 1, 2017

A look back to share the good!





As many of you know from Facebook, Mia was able to attend the wedding! The bride and her bridesmaids were very nurturing of both girls and included them in every way. Gabriella and Mia had so much fun they had to be pulled off the dance floor at the end of the night! It was such a wonderful celebration of two amazing people and the end of a long week for Mia. We know she would not have gotten better without all the prayers! Thank you all!


In light of celebrations, I would like to celebrate Mia's success and new adventures she had over the last several months.  Seeing as I have neglected to update this blog this year, I am starting way back in the winter! 




                                
Skiing! Without much snow this winter, we only made it to the slopes once but Mia and Gab enjoyed their first experiences. Fatigue set in quickly for Mia and she endured about an hour but she said it was fun, especially the magic carpet!!


In the spring we took the kids to NYC for a weekend. I was so proud of all the walking Mia did. We stayed in New Jersey, road a train into the city and took the subway everywhere. She was wiped out after that trip but she LOVED the Statue of Liberty and The Museum of Natural History. Times Square was too overwhelming so we walked a few blocks and left.


You would think, living so close to Letchworth State Park, we would have taken a trip here before now but that is not the case. We finally made it. The big kids really liked it and can't wait to go back hiking. Mia loved looking at the falls.



There she goes! Mia endured one of the hottest days of the spring at Special Olympics. She really enjoys participating in this awesome event and all her grandparents come to cheer her on. It is such a special day for us. Mia's face lights up. Look, she even waves to the crowd as she runs!!



Mia's second year of Challenger Baseball is better than the first! She looks forward to her games and played on Frontier Field this year. This is her in the Red Wing's dugout!!! She has made new friends and enjoys running the bases. 


What can be better than kicking off the summer with friends at an amusement park? Fun times were had at Darien Lake and it was the first time on the big Ferris Wheel! 





And finally, our hospital stay. Yes, this is part of my list of celebrations, not because Mia was sick and had to go to the hospital, rather to see the improved accommodations of the new Children's Hospital. The rooms are all private!!! They are very spacious, allowing all six of us and visitors to fit comfortably. There are showers in every room so I was able to stay right in the room and just have Dave bring me clean clothes. A Ronald McDonald wing on the first floor provides amenities such as laundry facilities, snacks, coffee, sibling watch and a wonderful library! Mia's Marchers has been raising money for 9 years now with our totals around $75,000. How wonderful is it that our efforts are being enjoyed during the most difficult time for families. I am also celebrating the fact that it has been 2 years since we had an overnight stay. We have been in for outpatient surgeries and procedures but nothing too major. The first picture above is the view from our room and the second is Grace's Garden. The rooms are bright and the garden gave me a chance to breathe and regroup. Mia enjoyed some pretty entertaining birds!!

Thank you for sharing in all our ups and downs! My next post will most likely be a medical update!! Hope everyone is enjoying some sunshine!