Sunday, April 19, 2015

Finding our new "normal"

I intended to post much sooner but every day seemed crazier than the one before! Between phone calls, getting Mia's new medical supplies in order, visitors, visits to schools and everyday happenings of the whole family, it took a full week to unpack! I still have not finished sending "thank yous" so if you have not received one yet, please know it will hopefully be on its way soon!

When we arrived home last Saturday, all the kids were waiting for us in the driveway. Gabriella was so anxious to hug Mia that she climbed in the car and began unbuckling her before Dave or I opened our doors! The rest of the night they were inseparable. They immediately went into their room and began making up for lost time. The girls are so happy to be back together!!! For me, it was heaven hugging my other kids again! 


Two days before we came home, while in the hospital, we learned how to cath Mia through her new "port"/stoma (the Mitrofanoff). This process, while not painful but a little uncomfortable, left Mia hysterical! She needs to be cathed every two hours so every two hours were dreaded by all! Thankfully, we had WONDERFUL nurses this week (two who took care of Mia at Daystar!) who helped Mia work through much of her anxiety. She went from screaming to helping in just one day! Thank you Monica! Although she is trying to accept her new body and life, she has a long way to go. She asks the same questions daily. "Why did God make me like this?" "Why do I have stoma?" "What is this for?" "How long will we have to cath?" The questions go on and on. 

Being home has definitely helped Mia's spirits and mine, however, it also has its challenges.  Home, and everyone at home, is the same but Mia is different. Because Mia is hooked to a urine bag at night she cannot get out of bed without one of us. We have a baby monitor set up so we can hear when she gets up. She continues to have spasms at night which wake her and her anxiety comes out at all times throughout the night. She will wake with all of those same questions. It is like having a new born all over again! Because we have to cath every two hours, our daily activities/schedules need to work around that as well. It's just a matter of finding our new normal.

As usual, Mia continues to amazes all of us! Although she is working through anxiety and varying emotions, she wants so much for things to be normal again. "Normal" includes going to school! Yes, she wanted to get on that bus with her sister this week! Thursday morning she decided she wanted to go, ride the bus, attend school and ride the bus back home. No half day for this girl! No rides from mom. I was nervous but also know that the quicker she gets back to her old routine, with her new changes included, the quicker she will accept things as being what they are. She went to school Thursday and Friday but did have a meltdown Friday afternoon. All the questions began and tears were flowing. She said, "I'm sorry. I didn't mean to cry but sometimes I just randomly cry. I don't know why!" Again, school and friends haven't changed yet she has. She will have to find her new normal at school as well! We are blessed to have our Plank North Family helping every step of the way! Mia is so happy to be back with Mrs. Roumpapas.

So much for this little girl to process and accept yet she continues to smile and push forward! 




Thursday, April 9, 2015

Oh, the Power of Prayer!

Thank you all for praying so hard. Mia's procedure went well. There are no leaks and all looks good!!! Mia has had many tears today but it is going to take time for her to get used to cathing her bladder. She still has another 6-8 weeks of healing.  The remaining catheter will be removed after that and additional testing will tell us more about her new bladder function and health of her kidney.

With that being said.....we should be on our way home Saturday!!!! Dave asked earlier why I used the word "should". I have learned things can change at any given minute so I am afraid to use definitive words. However, that is the current plan and we continue to pray that there will be no surprises.

HOME SWEET HOME!

Wednesday, April 8, 2015

Guardian Angels!!!

Calling all of Mia's guardian angels! Tomorrow Mia will have one last procedure here to remove  two of the remaining three catheters, the last one will be taken out in Rochester. They will test to make sure there are no leaks in her new augmented bladder. Then, we will begin cathing her every 1-2 hours. Please pray that all has healed with no leaks and cathing will go smoothly. Mia does not understand her new body and is very anxious. Tomorrow will be traumatizing for her and me.

I just pray that everything looks healthy and we can stay on track for going home Saturday! The rest of her healing, mentally and physically, will just take time! My healing will take weeks of wine and bubble baths!!

Love to all and hope to see my friends and family very soon! Thank you again for keeping us in your prayers. The power of prayer is amazing!

Friday, April 3, 2015

Love and Laughter are the Best Medicines Around

Monday brought Grammy, Uncle Curtis, Aunt Lissy and Mia's 3 cousins. It began with huge hugs and tears from all and ended this morning in a very similar way. The days were precious and made the week fly by. Mia lit up every time her cousins came to see her! Mia has almost slept through the last two nights, with just minor interruptions. Of course Grammy was her bed partner and now I wonder what tonight will bring. The funny thing is Grammy snores (sorry mom, had to share) and I can't believe Mia was able to sleep through that. The only thing I can figure is that it must be good "white noise" for Mia which means I had better start learning how to snore!

It was a wonderful week! Mom stayed with me at the Ronald McDonald House and was a huge help, especially emotionally! Mia LOVED having her around and so did I. I miss her already! My brother, sister-in-law and kids stayed at a less than ideal campground about 30 minutes away. They made and brought dinner to us each night so we could all eat together. After dinner, the kids played in the playroom with some of our new friends here. Mia LOVED that and I was able to enjoy a much needed visit. The kids enjoyed the good weather on the playground and we even packed in a trip to the zoo. My brother, who has earned the title "Golden Child", celebrated his birthday yesterday by giving ME the best gift ever....my family! His partner in crime, "the Golden Sister-in-Law" gave up her school break to be with us. I am so very blessed and grateful.






To make the week even better, Mia's teacher, Miss Magliocca gave up her school break to visit as well! Wow!! Mia is one loved little girl and I am one blessed momma!  Miss Magliocca and Mia played hide-and-seek, pool, bowling and so much more! They even designed a Hero cape together that Mia will have made for her through a local organization. They will return this upcoming week to reveal all the capes and their heroes! Mia was looking forward to Miss Magliocca's visit for days! To have your teacher visit is like the coolest thing EVER! And to know she drove 8 hours to see you....well, that's just awesome!!!! I cannot forget to mention Miss Magliocca's wonderful friend Mr. Powers, who made the trip with her for a child he had never met! 


Day by day is how we will get through our last week! The end is in sight and having a countdown helps. Mia knows when dad comes in 6 days, we are very close to going home!! Praying the next week goes by quickly and with continued progress. We do have one more visitor, the EASTER BUNNY of course!!!

Happy Easter to all and thank you again for all the prayers!