Sunday, July 20, 2014

Cincinnati, Take Two



I know many have been waiting for an update since our Cincinnati trip but I felt like my emotions were not in a good place to write effectively. Time has allowed us to process all the information, settle our emotions and get into a new routine.

Upon returning from Cincinnati, we continued to give Mia daily foley catheter enemas. It was extremely rough in the beginning and we just wanted to say forget the whole thing. Thanks to a support group and her doctors, we stuck with it. We are so glad we gave it time because she is now an enema champ! As usual, Mia has risen to her challenge. The best part is she is in big girl undies remains stool free during the day. No more having to be "changed".

With her bowels being managed, our focus is now on Mia's urinary system. She has to wear thick, adult urinary pads due to her constant leakage. Her new medication, Oxybutynin, helps slow her leaking just enough to be able to stay in underwear with a pad. Unable to empty her bladder fully, Mia is now getting urinary tract infections. This is very problematic for her single kidney. That being said, we are headed back to Cincinnati for more procedures and testing of her bladder!

 Mia and I will be flying in on the 30th, staying at the Ronald McDonald House and flying home on the 2nd. We will meet with the urologist and gynocologist while we are there. During our last visit under anesthesia, they discovered Mia's vaginal opening, which was reconstructed when she was four months old, has closed. Yes, this will have to be surgically fixed.

To date, we have been told that most likely Mia will need bladder augmentation (increase the size of the bladder), bladder neck tightening (to prevent leaking), vaginal reconstruction, the M.A.C.E. or Malone procedure (http://www.cincinnatichildrens.org/service/c/colorectal/treatments/appendicostomy/) to manage her bowels and the Mitrofanoff (http://www.aboutkidshealth.ca/en/healthaz/testsandtreatments/procedures/pages/mitrofanoff.aspx) to manage urine. Basically, they will reconstruct and reroute her systems all in one surgery. It cannot be done here in Rochester so we will have to go to Cincinnati. Recovery time is 4-7 weeks.   
      

The big questions, "Is all of  this necessary?" Of course the answer is  both "Yes" and "No" so I will try to simplify. She has to have her vagina repaired, bladder tightened and most likely augmented (we will know more after this visit). Those surgeries are a must and her bladder surgery cannot be put off if we want to keep her kidney healthy. We do not have to do the Malone or Mitrofanoff, however, we feel it will improve her quality of life significantly.

If we do not do the Mitrofanoff for her bladder, she will have to catheterize herself through her urethra to void her urine every 3 hours. Because her bladder does not function properly, she has to empty it using a catheter in order to keep her single kidney healthy. The Mirofanoff will allow her to place a catheter in her abdomen instead of her urethra, therefore making it much easier for her. For her bowels, she can continue to get daily foley catheter enemas but she will always need assistance with her bowels. The Malone will allow her to administer an enema from her abdomen. Again, the goal is that she can eventually do this by herself and not have to rely on someone for toileting needs. Added benefits include her ability to be more like her peers, remain stool free and out of diapers, swim without worries and not smell. She may even be able to go on a play date without one of us! She wants to do big girl stuff like her sister and this can give her that!

We have thought long and hard about this. We feel that if Mia has to have surgery anyway, we should do the whole thing. I belong to a spina bifida group and many have had these procedures. I have yet to read one person who has regretted it. The majority of comments center around how much easier their lives are and wondering why they they waited so long to have it done (comments are from those with spina bifida themselves and those that have children with spina bifida). The older she gets, the harder the surgery and longer the recovery. She is young. School is more manageable in first grade than it is in fourth. Her friends will not really understand at this age and it will just become "normal" for Mia.

This surgery will be a big one but hopefully with a big payoff for Mia! It is not scheduled yet but anticipating it will take place this winter. In the meantime, we will try to prepare ourselves for the difficulty of watching our angel fight, yet again, through a painful reality of her life.


                                                                                                            

Sunday, June 8, 2014

Still in the Top Six!


Mia's Marchers raised just under $10,000, a few hundred shy of our goal. The sun was shining and our hearts were full! The day could not have been more perfect in so many ways and came at a time when Dave and I really needed the support of all of our loved ones. Thank you to all who came and ran, walked and/or donated! We are so proud and grateful.

Proud of our kids
Proud of our 5K Runners

Grateful for our St. Joseph friends
Grateful for Nonno's fun, loving spirit
Grateful for Plank Road teachers, aids and Assistant Principal who have treated the girls as if they were their own!
Grateful for Grammy's unconditional love and enormous hugs

Grateful for friends who have been with us from the beginning, all 6 years, rain or shine!



What I love is witnessing over 6,000 people coming together for a common purpose, paying it forward. No matter what the cause (Autism Up, Tour De Cure, Kidney Foundation, Breast Cancer, Alzheimer Association, The Dream Factory, Camp Good Days and Special Times, Make A Wish, Ronald McDonald House, the list goes on and on), the impact each of us has on someone's life is immeasurable. Thank you for helping us support one of the many organizations that is near and dear to our hearts. We couldn't have the impact we have without all of you.

Saturday, May 10, 2014

Hanging On

An update at this point is confusing to say the least so I will try to simplify! After Mia's water soluble enema and review by a team of doctors, our course of action has changed drastically. To begin with, we will not be admitted tomorrow for the colonic manometry study. Instead, Mia will have a same day procedure in which the doctors will scope her urinary and bowel systems. Because she was born with, what we've come to be known as, a cloaca (essentially one opening for her vagina, anus and urethra) and a single kidney that sits on her bladder, they need to determine what "wiring" is present and where everything leads.

Those tests will give us more pieces to the puzzle, however, each doctor we have spoken with strongly believes Mia will not achieve voluntary continence of her bowels. With the lower portion of her sacrum underdeveloped, the nerves needed to control her bowels are not there or have not properly developed. Therefore, we have begun a bowel management program  which entails giving Mia a daily enema to help her achieve "social continence". The idea is that by flushing her once a day, she will empty once and be free of bowel movements for 24 hours until her next enema is administered. We had our quick instructions and given our medical supplies all in about 1 hour. Our first attempt this morning in the hotel was beyond stressful!

It has also been confirmed that Mia will not be able to urinate in a "normal"way. She has a neurogenic bladder that has left her with a very weak sphincter muscle and a bladder that does not contract as it should. She will need surgery, at some point, to addresses her leaking and then she will need to empty her bladder via a catheter. In order to keep her one kidney healthy, we will need to do necessary surgeries of her bladder. We are told  that a healthy bladder equals a healthy kidney. She will be getting a blood work up to determine the current health of her kidney.

Maybe some of you have given or do give daily enemas. For us and Mia it is new and stressful. Our goal is to get to a point where Mia is not crying and the benefit of not having to wear diapers to school outweighs the uncomfortableness. The whole process takes an hour but if it works it will change Mia's everyday life.

My heart is very heavy. No, this is not the end of the world. Mia has her health which I am so very grateful for! But, if I am being honest, I hate doing this to her everyday even though I know the benefits are immense! With tomorrow being Mother's Day, I am so glad all the kids and my mother are here with me (obviously, my husband too!). I cannot thank my other 3 kids enough for their patience and understanding during our "vacation". They have been wonderful. Obviously, my mother has been our saving grace. As usual, she is here for me/us every step of the way. Fourty-one years later, she is still taking care of me.

On a good note, our camera was found and turned in! And a wonderful friend from AQ suggested a local ice cream place and we all enjoyed a nice afternoon! Thanks

Thursday, May 8, 2014

Quick update from Cincinnati

Our drive to Cincinnati went very smooth. It took 9 1/2 hours with just two stops! Grammy did great...and so did the kids. As soon as we arrived, the kids were ready to go in the pool. Nice start to this long week!



Mia's first appointment with Dr.Kaul (GI) was overwhelming but we expected that.  He is gentle, kind and thorough. We are very impressed and grateful to be in the right place! Upon examining and reviewing Mia's history, his recommendation is that she be seen by the Colorectal and Multidisciplinary Team, thus adding to an already packed week. Thankfully, most of the team has been able to fit us into their schedules last minute. Meeting with this team will give us the whole picture so we are able to make decisions that will not only be good for today but also for Mia's future.

Our appointment with Dr. Kaul was over an hour and a half. As our heads were spinning so was Mia's. She completely melted down and could not stop crying. Of course she didn't understand all of our conversations but she did understand that it all means more doctors invading her personal space and putting her through things she will not like.

After our visit, we went to the zoo with all the kids. It was a nice distraction for all of us! As luck would have it, we lost our video camera while we were there. I turned to Dave and said, "It looks like it is going to just be that kind of week."

Last night, Mia was up most of the night. After our first full day and night, we were not very optimistic for our next, much more strenuous, day. Well, little Miss Mia proved us wrong! As usual, she was so brave. With the help of an outstanding Child Life Specialist, she didn't even shed a tear! We were at the hospital from 9-2:30, went to three different appointments complete with water soluble contrast enema, x-rays and an EKG. Again, we tried to end the day on a positive note. The kids swam in the pool and then we ate at the Riverview Restaurant here at the hotel. It is a revolving restaurant that over looks Cincinnati, Kentucky and the Ohio River.

Tomorrow our appointments begin at 7:40am. Dave and I both agree that it feels like we have already been here a week! Each night we are exhausted from overload of information and high emotions. The real hard part doesn't even begin until Sunday when she will be admitted. We are so glad the whole family is here and so is Mia. I would be remiss if I didn't mention how unbelievably grateful we are to have my mother here with us. She is our angel, taking care of the other three kids back at the hotel so Dave and I can both listen, learn and be there for Mia. We couldn't have done this without her.

That's all for now. I hope to post again soon. Thank you for all your prayers. There is no doubt it is helping us get through!



Monday, April 7, 2014

Don't Miss Out!

Who doesn't want to be a part of this awesome team?


It is that time of year again and we are looking to grow our team. Please consider inviting a new friend to join Mia's Marchers! Follow this link to either join or donate to someone already on the team: http://www.helpmakemiracles.org/index.cfm?fuseaction=donorDrive.team&teamID=23451  To join, click "join this team". To donate to a team member, click on  team member's name and "support me".

The Stroll for Strong will be held May 31st at Genessee Valley Park  at 9am and is so much fun. Last year we had an excellent turnout and raised over $10,000.  We have a slow start this year but our team always pulls through. I would love to match last year's amount or, even better, exceed it. Please help spread the word so we can continue to support a hospital that is near and dear to our hearts and helps so many children  in our community.

We are forever grateful to Mia's medical team and all the wonderful support staff at Golisano Children's Hospital. Not only did they save our angel, they gave us hope and reasons to believe in miracles. So, join our efforts in paying it forward. A Golisano angel might touch your life someday too!

Monday, March 17, 2014

Cincinnati...Here we Come


Is it really March already? Believe it or not, it has taken us from October until now to get into Cincinnati's  Pediatric Gastroenterology Program. In my September post, "A Blow to the Gut", I shared results of  an MRI and bladder procedures Mia had, both of which indicated problems that are impacting her toileting. With this new information, we are trying to piece together what may or may not be working for Mia and how we can help her gain independence in her toileting. With issues in both bladder and bowel, we will need to look at each system independently. We, along with her doctors, have decided to focus on bowels first. Mia's current GI doctor referred us to Cincinnati Children's Hospital in order to take a more thorough look at Mia. Our visit is scheduled for May.

Dave and I are very grateful that Mia has a full time aid helping her to manipulate her school and assist with her brace and toileting. Mia remains in pull-ups and is on a daily combination of Mira Lax and Metamucil. It is a less than perfect system. She has an average of three to four diaper changes during her school day and a daily average of eight. She is pulled out of class to get changed in the Health Office and also receives her Mira Lax there. This means more time out of the classroom. Thankfully, this has not negatively impacted her peer relationships. We do fear, however, as she gets older this will begin to set her apart from her peers.

Although we try to regulate Mai's bowel movements, they are extremely inconsistent. There are times when she is just a runny mess and times when she is extremely constipated. It is such a tough balance and daily struggle. Much like an infant, we have to track Mia's bowel movements, how many and what kind.
In addition, we have the added issue of Mia's eating and slow growth. At five years old, she is only 27 pounds, 36.5 inches tall.

All of these things have led us to Cincinnati Children's Hospital, which is one of only five hospitals (Strong is not one of them) that do an extensive motility study of the GI tract. A colonic manometry will determine how well her colon works. She will also have an  upper endoscopy to examine the lining of the esophagus, stomach and the first part of the small intestines and a water soluble contrast enema to help identify continence issues. This week long study will be a combination of inpatient and outpatient. She will have to have anesthesia and be on bed rest for the colonic manometry.

To make this very unpleasant visit a little more tolerable, we are bringing all four kids. My mother has graciously volunteered to come with us and help us out. We have decided to make a mini vacation out of it seeing Mia will hopefully have 4 days outpatient. We plan on going to the Cincinnati zoo, aquarium, museum and other attractions.  Dave and I know the reality, this week will be unpleasant for Mia and difficult for us to watch her. It will be a lot of new information on top of a very emotional week. We are hoping the presence of Mia's siblings will help her and us!

As usual, we are asking friends and family to keep Mia in their prayers as she braves another medical challenge.

Sunday, January 5, 2014

It Doesn't Get Any Better Than This

2013 was an amazing year! 
2013! It began with many fears surrounding the girls' upcoming entrance  to kindergarten that ended with the good news of our new "Mayor". Included celebrated milestones we never thought possible. Gave new meaning to dreams coming true. Brought great health. Blessed us with new friendships. Opened our eyes to a whole new level of human kindness. And created memories with family and friends that we will cherish forever.

So many proud moments this year. Looking back it is amazing how blessed this year was. First we found out Mia was being granted her "dream" to meet Cinderella. The trip, given to us by The Dream Factory, was nothing short of magically unforgettable. It truly was the trip of a lifetime! Our Give Kids the World Star shines brightly in our family room, our own little "Castle of Miracles". During this trip, we were fortunate enough to travel with another Rochester family and  began a new friendship.
Upon returning, we quickly began wrapping things up for the annual "Mia's Marchers". Marking our fifth year, we decided to set our goal high and celebrate big!! We raised over $10,000, bringing our five year grand total to just over $32,000. In honor of all our supporters, we gathered at the house to share some food, friendship and good times. The memory of gathering together in support, love and for a greater cause is priceless.
Three weeks later, we found ourselves celebrating again as Mia and Gabriella walked across their preschool stage. Oh, how proud these preschool parents were! I should not forget to mention how proud their grandparents and siblings were too. They had a whole cheering section, complete with a cousin from Italy! These girls!!!
Summer was filled with new adventures and plenty of fun. The girls took swim lessons for the first time and Gabriella was even swimming by the end! Mia was able to ride along with the other kids in her new adaptive bike. Both girls participated in the Penfield Library Reading Program. We spent an overnight in Old Forge with our best friends/family the Davenports. Let's not forget swimming, kayaking, boating and jet skiing at the Stuvers on Canadaguai Lake.



Of course, Fall did not disappoint. School began with a bang! All kids love their teachers and are doing great! On our first long weekend, we were able to take a drive through Canada's African Lion Safari. The monkeys hitching  rides on the roof our car  was definitely a highlight for us! All the kids enjoyed our annual trip to Stokoe Farms for some Fall Fun. The main event....Gabriella and Mia turned five. They thoroughly enjoyed their Princess Sofia party and all the accolades that came along with it.




The year ended with holiday celebrations and much needed family time! 





  2013. We are grateful for all you brought. Love and laughter filled our house and the memories we made are some of the best we've had.
Goodbye 2013.
Hello 2014.
Here's hoping for another banner year.