Tuesday, September 19, 2017

"Growing" Concerns

As Mia begins fourth grade, she weighs 35 pounds and is 45.5 inches tall. Since December of 2015 she has gained less than two pounds and grown less than three inches. There continues to be concern over Mia's lack of growth, however, following our most recent doctor appointments, this lack of growth may be helping her maintain a healthy kidney and spine. Both doctors are quick to point out that their concern should, in no way, make us want to keep her small. We need to try to feed her as many calories as possible and they monitor her closely when she grows.

After Mia's last hospital stays, we were referred to a nephrologist, kidney specialist. Mia is at extremely high risk for kidney disease because she has a neurogenic bladder (basically one that doesn't work correctly), a single kidney with some reflux, a pelvic kidney and reoccurring UTIs. Mia's kidney, although bigger than a normal kidney of individuals who have two, is still on the small side. Individuals with one kidney usually have a kidney that measures in the 80-90th percentile and hers is in the 50th. A single kidney has to be significantly bigger in order to do the job of both kidneys. The question becomes will her kidney be able to keep up with her growth? We cannot determine that because she is not growing.

Having a single, pelvic kidney is rare. Two nephrologists at Strong assessed Mia. One doctor has never seen a single, pelvic kidney and the other has been in the field for 20 years and "has seen it, though it is rare". Both were very concerned and uncertain about her prognosis given their experience and Mia's multiple medical conditions. Dave and I both agreed we should reach out to Cincinnati, where her bladder surgery was completed. No surprise that Cincinnati is very concerned as well. Cincinnati wants her bladder augment to be evaluated by the Urologist who performed her 2015 surgery to make sure the bladder is functioning properly. According to him, there is an increased chance that her kidney will eventually not work very well. "Most experts agree that a single pelvic kidney in a child with her multiple birth defects will have some degree of dysplasia, meaning that it did not develop fully well." Puberty is the time we will begin to see kidney function decrease.

The thought of returning to Cincinnati is something we are not ready for but certainly will do if she continues to have UTI and kidney infections. Every doctor agrees it is imperative we get her infections under control. We have started a new antibiotic, pushed directly in the bladder via her catheter, and are hopeful that will break this cycle we have been in.

Next was her orthopedic appointment. Mia's lower, lumbar, curve is stable which the doctor says is due to her lack of growth. Unfortunately, she has developed a significant curve in her upper, thoracic, spine. Again, the unknown is what will happen when she grows. The doctor "fears it is going to take on a life of it's own" as she grows.

For years Dave and I, along with many family and friends, have prayed that Mia would grow, feeding her every chance we can get. Today, in some way, I feel thankful she has remained small. To think of all the possible complications that may come with growth frightens me. I wish I could bottle her up and keep her from growing. Then I look at those spindly legs and how her classmates tower over her and I pray she grows. Overall, I pray that Mia will grow and defy her odds as she has done so many times before!

On a positive note, Mia and Gabriella love their fourth grade teachers. Gabriella's nerves over Mia's health have gotten much better since school started and her stomach issues have disappeared for now!! It's good to be back to some routine and normalcy!

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!

Friday, July 21, 2017

Looking Good

The doctor came and gave the final decision. If Mia remains fever free the rest of the day, they will discharge her after dinnner, maybe around 6!! They are making an exception because of the wedding. Of course, we will keep the day as low key as possible for her and watch her closely!  So far, she looks and feels great!!! The next few days will be crazy so I will try to update as soon as things settle.

Thank you all for your constant prayers and support. The power of prayer is amazing!!

Thursday, July 20, 2017


I have been trying to put up a different picture from today but am having a hard time and I just don'thave the energy to fight with technology tonight!

So, this morning I asked for prayers and in the first 30 minutes there were tons coming from near and far! How blessed are we? Although today could have been better, the prayers are working and we are extremely grateful for all the love and support that constantly surrounds us! Thank you all so very much!

The day began very optimistically! Mia had wonderful friends come up to visit and they played games, went to a music session with her and lifted her spirits (and of course mine)! Her sister Gabriella spent the whole day with us and big sister Samantha joined us later. There was a lot of love and joy which always helps the mind and body heal. Unfortunately, Mia spiked a fever around 3 that reached 104% again.

After a few hours she perked back up. Daddy came and took her for a walk, played eye spy with her and watched her eat a great dinner! I gave her a shower and she was like our old Mia again. After her shower, her IV came out. The team decided to leave it out in hopes that they may send her home early so she can be in the wedding.

Earlier when I spoke with the doctor, he said we would be here at least a couple more days and that they would like her fever free.  When I told him about the wedding, he said they will sit down and discuss it in the morning and take that into consideration, as well as the fact that Dave and I are on top of her medical care. The bottom line is, they have to see how she does tonight. If she can remain fever free and seems to show improved tomorrow morning, they may let her go early. I made it very clear that I do not want to jeapordize her health but we do need to let her and the bride know. He said they will make their decision by noon (which in hospital terms may mean 1:00 or 2:00).

So, thank you again for keeping us in your prayers!!

Prayers Needed

Mia could use some prayer warriors. She was admitted Tuesday for a kidney infection. In the grand scheme of the things, a treated Kidney infection isn't too bad, however, timing is of the essence. Mia and Gabriella are flowers girls for a beautiful friend's wedding this Saturday. They have been so excited for this wedding and if Mia's fever doesn't break today, she will not make the wedding. I am also thinking of the bride who, as all brides know, have planned and pictured their perfect day for so long. We have reassured her that Gabriella will there but I know it won't be the same. In order to get sent home, she needs to be fever free for 24 hours. Seeing as she spiked another fever in the middle of the night, we are cutting it close. Thank you. I know the power of prayer can work miracles!!

Saturday, April 29, 2017

It's actually happening!

Thursday we had our "hard hat", without hard hats, tour! It was so amazing to hear about all the changes that are coming. We toured the steel walls of the surgical floor and the almost complete ICU and PICU. Mia has been a surgical patient numerous times, stayed in the PICU, ICU and been in pre-operating and recovery rooms for both inpatient and outpatient surgeries in the old hospital.  It will be humbling to experience them all again in the new hospital, being able to truly appreciate the difference. We even heard about the surgery room where Mia will have her next spinal surgery. The improvements to the room set ups and technology are fascinating! It would be pretty cool if our consultation ends up in our Mia's Marchers room! 

We owe all of our team participants and sponsors an amazing "thank you" for their constant support. The room you are sponsoring will be used by thousands of families every year. Currently, the hospital performs about 20,000 surgeries a year and that is projected to increase once the surgical suite is finished and they bring in more pediatric surgeons!

How wonderful to share this post as we begin to recruit more team members and donors to Mia's Marchers all benefiting Golisano Children's Hospital and Mia's Marchers Family Consult Room on the 4th floor! Come join and be a part of this special dedication. You can tell all your friends that YOU helped make this amazing thing happen!!! $36,000 more to go! We got this!!! Together we are strong!!

Click on link to join or sponsor.

Tuesday, April 25, 2017

In Need of Marchers!

Yes, we are still here! Like so many, our busy lives have made it difficult for me to keep up, especially with the blog. That being said, things have been pretty stable since Mia's procedure in the fall. We have had numerous appointments with her doctors. There have been some medical changes that have required and/or will require attention in the near future but nothing out of the ordinary.

With not much to report medically, our focus is on the upcoming Stroll for Strong! As you may recall, Mia's Marchers is sponsoring a surgical consult room in the new hospital. In fact, Dave and I will get our first glance at it this Thursday on a "hard hat tour"!! Our goal is to raise the remaining $36,000.00 of $50,000.00 by 2021.

This year's Stroll is Saturday, June 3rd. Currently our team is looking quite small but we know it will grow over the next few weeks. If you have never joined us, it is a wonderful event! Feel free to pass along the link below to your friends. The more the merrier! If you cannot attend the day of the stroll but wish to donate, you can sponsor any participant on the team by following the link as well.  When donating, please select "New Building Fund" for your program selection.


We look forward to seeing new and familiar faces!!