Sunday, September 1, 2013

A Blow to the Gut

This summer was filled with wonderful adventures for all. However, was also filled with stressful times for Mia. Mia does not like being out of her routine and new adventures can be difficult at times. Here are happy times she had at a dear friend's cottage on Canandaigua Lake.
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Summer is also a time of many doctor appointments for Mia which is extremely stressful for her. In July Mia visited her ophthalmologist. In an effort to improve her vision in her right eye, we are placing drops to dilate the left eye, forcing the right eye to do most of the work. Thankfully, that has been going well and in October we will see if it has been successful. We also visited her neurosurgeon, orthopedic surgeon, urologist and gastroenterologist. All of those visits resulted in an MRI. The MRI resulted in a new diagnosis for Mia, Caudal Regression Syndrome. That's a mouthful for saying Mia's sacrum (bottom portion of the spine) did not form. The new diagnosis sheds light on Mia's weaker lower limbs, feet sensitivity and toileting. The latter was a punch in the gut!

Last week Mia had two more procedures that confirmed a neurogenic bladder problem which will prohibit her from achieving bladder control. This means she will need to stay in diapers or empty her bladder using a catheter placed in her abdomen. There are a few other bladder issues that will need medication and/or surgery to correct them. Similarly, given her bowel incontinence, our options are diapers or the MACE (Malone Antegrade Continence Enema) procedure, which empties her colon using fluid (similar to an enema) through a catheter in her abdomen.

This news is not the worst, we know, but it most certainly has left us with a sick feeling in our stomachs. So vivid are the memories of her colostomy days. So vivid are the memories of procedures and surgeries to reverse the colostomy. And so vivid are the memories of hopes for a better independent life for Mia. The measures we took to reverse Mia's colostomy as an infant were to improve her quality of life for the rest of her life. To be more "typical", to not stand out from her peers in school, to decrease her chances of being picked on, and most important to gain independence throughout her life.  Given Mia's shunt, we also wanted to minimize her chances of infection. All of this now erased! We are back at square one and Mia will have to face challenges we never wanted and thought we had avoided for her. I guess God has other plans, even though we don't agree with them!!!!

As she begins kindergarten (that is a whole other post of worries), she will have an aid to help her through her day and take care of her toileting. We do not need to make decisions right now but the older she gets, it does become more immediate. We do have more appointments coming up and will be doing more research before we put Mia through any permanent changes. All of this requires more surgeries, more chances of infection and more challenges to daily life for Mia!

6 comments:

APPR=CRAZY said...

Keeping you all in my prayers; your strength is amazing.

Glenna said...

If that little cutie even remotely like her mom (and I suspect she is), she'll get through it like a trooper.

Hope to see you soon! :)

Anonymous said...

Our prayers march on with Mia and her amazing family!!

Janine said...

You and you family are absolutely amazing! She is loved so much by all of you. It is hard to know what God's plan is for her so all you can do is keep the faith that he knows the plan. I include her in my prayers as well as you and your family.

Karen Kwasnowski said...

Aaaahhhh, Carleen, please don't think you are back at square one! You may have gotten a set back, but it isn't all the way back to the beginning. The human body is an amazing thing and miraculous healings and "work-arounds" happen every day. Mia is proof of that! So don't give up hope just because someone (even a doctor!) told you what Mia won't be able to do. I often think of a line from the show Lost. John Locke said "Don't tell me what I can't do!". Keep hope. Keep faith. And keep working toward what you want for your little daughter. What you want for her might not be in the cards for her but that's for the universe to decide not you as her parent or any doctor. Just keep moving forward. Life is filled with Good Better Best.

cfallone said...

Thank you ladies!