Tuesday, May 26, 2015

Almost There!!

I can't believe it has been a month since my last post. They say no news is good news! I will say it hasn't been easy but we are in a much better place than we were a month ago. In fact, I've started this post at least four times. Each time I erased what was previously written and begin again because each week was a little better than the one before.

Even in a better place, Mia has nights she is up with nightmares and spasms and is hard to resettle.  The remaining catheter causes much discomfort and anxiety.  Thankfully, this last catheter comes out June 4th. We cannot wait!!! We think once that is out, Mia will move forward and be less anxious about her belly. There will be no more tubes taped to her body and she will be able to take baths again, lay on her belly, run without worrying about pulling the tube and so much more. This means Dave and I can also let go of some anxiety! I can't wait to be able to hug her close without worrying about her tube!

Mia has adjusted very well to cathing thanks to some wonderful nurses, phenomenal support from school and Mia's amazing strength and acceptance. Dave and I have also adjusted to cathing. Once Mia's anxiety decreased ours followed suit. I think it's safe to say that when you are comfortable enough to cath in the car, you have reached a new level of acceptance and performance.

We have begun to celebrate once again with friends and family! We are ready to begin our new chapter.


The older kids have resumed play dates and sleepovers and are mostly well adjusted to our new norm. We still are working a few things out, mostly with Nick. He says our family balance is not right because of the nurses. Keep in mind, the nurses only come 3 evenings from 3:30-7 so that I can attend Nick's track meets and run errands. Nick is literally home for about an hour, two max, when they are here. Samantha, on the other hand, loves having them and so do Gab and Mia. Samantha said they are so nice and she likes when they are here. Gab and Mia count down the days until they come! We told Nick this is only temporary. We will be done with nursing the second week in July. 


This roller coaster was a tough one to ride but we didn't fall off! We are all still here. Still hanging on. Still loving each day God has given us.










Thankful to be in a better place, we continually pray for friends back at the Ronald McDonald House who continue to struggle. Our prayer is that they too can move to a better place along their journey. One thing is for sure, this experience has left me questioning my faith more than ever. I have seen kids endure so much pain and suffering that it is very difficult to accept this as God's plan.   Not only was it difficult to watch Mia's suffering, but to witness child after child suffer in ways no one should have to. Imagine a two year old whose side effects from cancer treatment are so severe that his skin cracks, bleeds, weeps and his eyes are sewn shut in order to avoid infection and hopefully save his vision. In addition, they partially paralyzed his body in order to allow it to rest while healing. A sixteen year old, healthy and athletic, contracts a virus and in a matter of two days loses his heart. He is being kept alive by an artificial, mechanical heart and needs to remain until a heart becomes available (could be two weeks, could be two years, could be more). The stories are numerous! It's an entire hospital full of children fighting through illness, injury, disease, and surgery. A whole house full of families able to find smiles though the pain. I do see God's work in the generous volunteers, the love of all who share a common theme and the smiles of so many children who find beauty and joy among pain and suffering. These are the things that fill my mind as we count our blessings and move forward in our journey... happy to be in a better place...wishing for so many others to be here with us.

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!

Friday, March 27, 2015

We are full of Sunshine!

Notice anything, besides the crazy baseball head? Miss Mia got her NGtube out yesterday. I tried to post the good news last night but the internet was down. 
I am very excited and nervous at the same time. They want her to gain weight this week or they may put it back in.  I really have to get her to eat. If only Mia's appetite took after mine we would have no worries!!!! Still, we are happy to report the good news and hope this helps move us forward!

In addition, my phone rang at 8am. Music to my ears!! We are scheduled for her last surgical procedure that will allow us to come home! Thursday, April 9th she will have two of her remaining three catheters removed. She will be admitted overnight, Dave and I will get trained in cathing and if we pass our test, they will send us on our way! The last catheter will be taken out by her urologist at home after 3-4 weeks. How wonderful to start my day with that great news AND dad comes to spend a few days with us today too. Best day so far!

We can definitely hold on for two more weeks! Look at all the love we have!!! 
This is only a small portion! Mia has had cards and packages from friends near and far, people she doesn't even know. Dave and my friends from grammar school, high school and college have sent cards and packages, as well as our school and work friends and family from home. Of course Mia has touched many hearts here as well. We met a wonderful family here at the Ronald McDonald House, who of course have their own story of why they are here, who showered Mia with their love and surprise goodies. This beautiful woman said to Mia, "How can you love someone you just met so much? I don't know but I love you Mia! I will never forget you. You will always have a special place in my heart." It was so moving. We are blessed beyond words. Mia is so loved it is amazing!

Once Dave leaves, my mom comes for a visit with my brother, sister-in-law and the three kids. AND...Mia's teacher is coming!!! Mia is very excited! What a lucky kid to have her teacher drive 8 hours and give up her Spring break to visit Miss Mia. Just amazing to me! Looks like the sun is shining and God is knowing exactly what we need!

Some have asked about Nicolas, Samantha and Gabriella coming down. I know it seems crazy that they aren't coming too but we just think it isn't a good idea for Mia. Trust me, I would give anything to hug them and kiss them all over but Mia is finally in good spirits. If they come and she cannot go home with them, it will crush her! Hopefully, they will all come down to get us and bring us home! 

Thank you again for all the prayers and support!



Monday, March 23, 2015

Pictures and Perspective


Although Mia is still apprehensive and anxious about much of her day, she is definitely more comfortable and recovering better here at the Ronald McDonald House than at the hospital, . You know she is not her "mayor" self when she is not interacting with anyone other than me. She does not like to eat in the big dining room with everyone else and she leaves the playrooms when other kids come in. The nice thing about being here is there are many distractions! I can usually find a quiet place and an activity that works. There is a Little Tykes computer with Trudy, Sammy and Bailly's Playhouses, an arcade room, puppet theater, 3 different playrooms, a library, the playground and sometimes she will partake in guests that come with therapy dogs or musical instruments! Once she gets into a groove of playing, she is fine!

Check out this groove in our room!



 Of course, we love being in our bed with our stuffed animals!

A visit from Nonno and Nonna brings Mia smiles!









 The weather was even nice enough for us to go on the playground with them! 

Thank you Darrin for this colorful, soft package! She loves it!

Mia loves the butterfly pig by the playground!
As you can see, Mia has been busy and smiley!!! Although we are both very homesick, we know we our time here is a blessing in many ways. I have met some wonderful families and am constantly reminded that our journey is only one of many, some of which are undoubtedly more difficult and longer than ours. I really gain perspective when I talk to the families here. Like the mom across from us who has been here since October with her beautiful 21 month old daughter who has an inoperable brain tumor. Thankfully, although they can never fully remove the tumor, it is one she can live with but it will always have to be watched. This mom has a three year old son back home with her husband. Another couple has been here since January with their six year old daughter fighting a brain tumor, and have left their other kids back home in California. Yet another mom has been here since October with her 18 year old daughter who is waiting for her second bone marrow transplant. Everyone here has a story. Every child has been through so much and their strength is like no other! Through it all, they manage to smile and make us smile. When I heard we were still three weeks away from coming home, it broke my heart and then I saw my neighbor! Perspective, although sad, keeps me grounded.

So, I ask not only for prayers for Miss Mia but all children here and around the world that need God's healing and blessings.