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. 

Monday, March 16, 2015

On the Road to Recovery

We made it to the Ronald McDonald House Saturday evening. It was crazy! We opened all our boxes of medical supplies, took inventory, organized, set up a white board with a schedule and had visiting nurse services supervise my ability to run Mia's feedings. I passed!!! The first night was exhausting and Mia and I were both overwhelmed. Thankfully Aunt Leigh was here to help us through it all! I have been very lucky to have help even with Dave back home! 

Although Mia did not sleep well Saturday night, Sunday proved to be a much better day and night! Mia and Aunt Leigh played on the computer and in the puppet theater while I did some much needed laundry and ran back and forth to the hospital for additional medical supplies. We all had some smiles and even some laughs throughout the day!

I heard Monday was suppose to reach 73 degrees. Since the zoo is walking distance from the Ronald McDonald House and I had someone to help me in case of any emergency, I decided a trip to the zoo was just what the doctor ordered!

It's amazing what a little sunshine and being around the company of animals can do for the soul. Not to mention the two beautiful girls in these pictures! It was a wonderful day! We will be so sad to see Aunt Leigh leave tomorrow! I think it is safe to say, the Ronald McDonald House may be the perfect medicine for Miss Mia and me!

Saturday, March 14, 2015

Ronald McDonald House, Here We Come!

I am extremely happy to report that we are getting out of this place today! Yes, the discharge papers are being put together as I type! We will be moving across the street to the Ronald McDonald House, where Mia may feel less anxious and can mend her spirits.

Some have asked how we could have gone from bad to good in such a short time. As you may recall, Mia has been medically well all along. The two things we were working on were Mia's nutrition and anxiety/emotional distress. Since Mia now has the NGtube, all her nutritional needs will be met through overnight feeds. They are delivering the feeding supplies over to the Ronald McDonald House so I am set to administer that there. Obviously, being out of the hospital, around less strangers and experiencing less poking and prodding should decrease her anxiety. The home feel of the Ronald McDonald House and cool playrooms should help improve her spirits. I know it will improve mine!

In all honesty, as much as I am very excited to be out of here, there is medical comfort and security being around doctors and nurses 24/7. Mia still has three tubes sewn into her abdomen that I have to care for and the NGtube. I have a list of instructions for caring for her sites, draining her tubes and now doing her nightly feeds. Boxes of medical supplies, medications and an IV pole are awaiting our arrival. My heart skipped a few beats when the nurse asked, "So, do you know how to put the NGtube back in if it comes out?" Is she crazy? Yes, it's called call 911!!! It took 4 people and a music therapist to put this one in. I am just going to assume that with all the prayers being said for Mia, no tubes are coming out, no fevers are brewing and no one is aspirating!!!

Saying goodbye to some of our awesome nurses was difficult!

Now we are praying for peace and strength for Miss Mia and continued healing so that we can come home soon.

Friday, March 13, 2015

Just Not a Great Day

I could say today was just plain awful but there are always some positives to help overcome the negatives! By far, the scale was tipped negative for me but it was made much easier with my sister-in-law here. Not only is she an awesome support for me, Mia loves doing crafts and playing games with her.
Mia escaped from the floor and went for a wheelchair ride with us down to the cafeteria. Even though she slept through it all, it was nice to escape. A music therapist came to help Mia get her tube in. He was great and before the tube went in, Mia had a great time and made some awesome music with him!

Yes, I said tube. Mia worked really hard to avoid it but unfortunately, she didn't quite get there. She was very brave and music therapy helped quite a bit. Mia did gag and throw up. This was after a long day already. Mia had an xray in the morning followed by an enema and  a very resistant walk and visit to the playroom. Then, at bedtime we were told she needed another enema! Yup, on the toilet for another hour. Followed by....wait....yes, more vomit! Mia was finally able to relax in her bed around 10. 

 Tomorrow is another day.

Thursday, March 12, 2015

Maybe a Successful Escape

Mia and I have been working extremely hard to avoid the tube. I am very happy to report that we were able to escape it yesterday, however, they are still threatening. You can be sure that we are fighting back! Right now I am trying to convince the surgeon that if we have daily calorie, protein and fluid goals to meet, we will meet them. Once we leave here, it will be much easier to get Mia to eat and drink. Hopefully we will know more later today. Pins. And. Needles.

Wednesday, March 11, 2015

Not Getting out Anytime Soon

At the beginning of the week it was looking like we could bust out of here today or tomorrow. Yeah, not so much anymore! The doctors are less than pleased with Miss Mia's diet. She is lacking the proteins and fluids needed to heal properly after this complex of a surgery. The concern is that the incisions will open without proper nutrition. In Mia terms, she has done well with eating but her terms are just not going to cut it.

So, what this means is that she will need a new NGtube. This time, she won't be under anesthesia when they place the tube. Once the tube is in she will continue to eat by mouth throughout the day and receive supplement nutrition overnight through the NGtube. She will continue to get fluids through her IV. Obviously, we want everything to heal completely so we are trying to look at this as a step in the right direction but I know I will have to convince myself of that as I listen to her pleading cries yet another time.

I also worry about what this does to Mia's mental state. Tuesday she had a great day and played in the playroom for almost 2 hours. She wasn't as resistant to walking as she has been. She looked great with so many smiles all day.  Yesterday was a different story. She had to be forced for every walk and she did not want to go to the playroom at all. I was able to get her to smile with her nurse after she received her new monkey from her cousins back home.

On the bright side, Ronald MacDonald House called yesterday and we have a room! That is one less thing I have to worry about! We can go right across the street when she is discharged! Plus, she loves it there!!!! Many have asked for an address, here it is:
350 Erkenbrecher Ave., room 69
Cincinnati, OH 45229
As always, thank you for all the love, support and prayers!

Monday, March 9, 2015

Divide and Conquer

Last night Dave left Cincinnati to return back home to the other kids. My mom has been living at our house for the last two weeks. She has done an amazing job, as usual, but  having both Dave and me gone is beginning to take its toll on them. Although this was the plan all along, Dave was hoping to see Mia discharged before he left. I most certainly would have loved that as well but at least Mia was  in a better place. She needs to increase her intake of both liquids and solids before they will even think about sending us "home" but all aspects of her recovery are going well.

"Home" for Mia and me means staying here at either a hotel or the Ronald MacDonald House until her post op appointment which they haven't scheduled yet (usually 4-6 weeks after surgery). We are hoping to get a room at the Ronald MacDonald House across the street from the hospital but, in the two weeks we have been here, nothing has come available. We have a hotel room 10 minutes from the hospital that we will use in the meantime. Keeping our fingers crossed!

With just me here helping Mia, blog posts and texts may be less frequent! Believe it or not, there are so many people to see and so many tasks to complete that we rarely fit everything in. I also have no one to take shifts with so I will definitely be sleeping when I can and trying to fit showers in. I am so grateful to my sister-in-law and best friend who will each be coming to keep me company beginning Wednesday and ending next Tuesday.

Thank you again for all the support and prayers. We are constantly moving forward!

Saturday, March 7, 2015

Taking Time to Smell the Flowers

Mia has the cheeriest room on the floor! Thank you Borkowski Family for this beautiful arrangement. Today we could actually take a few minutes to smell those gorgeous flowers. Mia had a good day! She had sips of milk and water, couple licks of a popsicle and a few spoonfuls of chocolate ice cream! She did some crafts in bed and resisted leaving the room with a little less gusto!

We are extremely thankful for Mia's progress. We visit the chapel whenever we get a chance, at least once a day, and thank God for carrying us through this difficult process. We ask that Mia continue to move forward in her healing. We are overwhelmed and humbled by everyone's support and generosity. God's love surrounds us everywhere and cradles us like a warm blanket. It is amazing how in even the most difficult of times, our hearts are extraordinarily full!

Friday, March 6, 2015

Cautiously Turning a Corner

We began the day with great news!!!!!
 No more NGtube!!!! As you can see, Mia hadn't quite made up her mind about getting that thing out but Dave and I were doing the happy dance!

Next, Mia took a walk, read to her tutor, and ventured out into the play room. After all that commotion, she was exhausted and took a great afternoon nap. Mia still has a tremendous amount of anxiety about getting out of the bed and leaving the room. We are slowly working on that! Today, Mia didn't have to stand or walk to see her special visitor, he came to her.
Meet Eli! What a great way to cheer up a child who is hurting in many ways! Love dogs (not getting one though).

We ended the day with great news that she is cleared for liquids. That means popsicles!!! Funny thing is now that she can drink, she doesn't want to. Of course this is all very normal. Can you believe I did not get a picture of her first sip (sorry Julie). Just not enough hands.

Finally, Mia had special visitors from home, Nonno and Nonna. They brought cards and care packages from cousins and Plank North. That really brought some smiles.
 Thank for the lucky headband!
And bubbles to cheer everyone up!

Thursday, March 5, 2015

Riding the Roller Coaster

After the highs come the lows. Our highs, no matter how small, help carry us through the lows. Can you guess what this picture is? Mia was very upset. Her anxiety level and anger have escalated to the point that she does not want to leave her bed, not even to sit in a chair. We had a dog visit today hoping it would motivate her to walk and make her smile like the other day. She was suppose to walk to the dog that was waiting in the hall but she refused to leave the room. They brought the dog to the door and we stood there with her fighting every step of the way. We went to the playroom and she protested the ENTIRE time. She refused to play with anything or do any craft. On the other hand, she read a book today and did some school work. Miraculously, we did get her to walk, protesting loudly, four times!

Our high for the day is that she had her tube clamped all day with no vomiting.  If she does not get sick overnight, they will take the tube out tomorrow. Please, please say more prayers!

In my posts I have neglected to mention, not on purpose, how outstanding the doctors, nurses and support staff are here. Mia has an AMAZING team of doctors who have made this unimaginably difficult process much easier. We are so grateful for all they are doing. They are exceptionally skilled and have wonderful bedside manners! God blessed us by putting Mia in these remarkable hands. I will say even nicer things about them when they let her drink and eat! LOL.

Wednesday, March 4, 2015

Thank God for Light

After my very dramatic but very real post last night, God brought us a day we desperately needed! Without words, the pictures tell so much. However, I am anxious to share a little on the bright spots of our day. 

Yesterday Mia's only response, accept for the dog, was NO! She was so sad and angry. She even pushed a nurse away from her. I know this is all very normal but also very difficult to watch. Well, the morning started quite the same when we had her walk to the scale to get weighed but she quickly made a 180. She agreed to work with the hospital tutor, a little common core math, a little word work. She made a Mr. Potato Head sticker family with the OT.  She even got to go to the playroom where she put stamps and stickers on her body. Her little personality began mending our heart today.

More good news!! Her bowels are awake!!!! This means tomorrow they will clamp (pinch off) her nose tube and see how she does. If she does not vomit all day with that tube clamped it can come out Friday morning. After that, she can have a sip of water!!!!

Mia is still in a lot of pain at different points throughout the day and is not sleeping at night. That being said, she is sleeping right now and I need to try to get a little bit of sleep.  I had to share the awesome news first!!! We are cautiously optamistic that we have turned a corner.

I know it was the power of prayer that brought us today's reward, so thank you all!!!  Can't wait to report more good news and post more great pictures!

Thank you, thank you, thank you for the prayers and support.

Tuesday, March 3, 2015

Waiting for a Light

I don't like to complain or be dramatic but this post may sound a bit like that. In reality it is just life here. It is becoming increasingly difficult to find a bright spot in our day, although today we did have one when child life brought Mia a special visitor! His name was Rudy. Here is a picture of Mia and Rudy.
Rudy is the first thing that Mia has said "yes" to since her surgery.

Mia is making slow but continuous medical progress. She is on track for what they would expect post op. We have removed most of the heavy narcotics and are giving those as needed.  Mia has remained fever free and her wounds look great! She is walking with a tremendous amount of protest, three times a day with increased distance every time. These are all good things.

The words "on track" only bring so much comfort. Unfortunately, as part of the healing process, Mia is experiencing bladder spasms. They are very painful, very normal and only relieved by a few drugs, Valium being one of them. Mia has not had anything by mouth in a week and is still a few days away from that, earliest would be Saturday or Sunday. She begs us to go home and to have something to  drink daily. Yesterday she asked, "If they have grocery stores here, can we get something to drink when we leave?"  She is refusing to color, play, read, walk and even talk to people here and/or at home. As you all know, Mia talks to everyone! The only thing she says over and over again is, "Can we go home now? I want to go home. I am all better."  She is just in a terrible place which makes us in a terrible place.

This is more difficult than we ever could have imagined. It seems to be lasting FOREVER (**note the drama - I warned you). Mia has four new holes in her belly with drainage tubes stitched in place that obviously bring her discomfort and a large tube down her nose and throat! She is being poked and prodded and made to do things she doesn't want to. Her body, her choices and her world around her are not her own and she is protesting in every way.

Dave and I take shifts at bedside during the night. We usually lay down about 3 hours at a time and hope that we can get at least 2 hours out of that. Mia is up often most nights. Last night she was up every 15 minutes with bladder spasms. We have adjusted her Valium and hope that helps. Each day brings old and new challenges. We feel like the steps forward just aren't going fast enough. The only thing we can do is live through each day and count it as a day closer to the next.

Again, we appreciate all the prayers. They are helping!