Mia

Thank you

2012-01-07T19:52:00.000-08:00

Thank you everyone for your wonderful sentiments on the blog post. It's amazing any of my posts make sense! They usually take about three nights of falling asleep on the couch, with laptop slowly falling, before they are complete! Whether it is a silly or serious post, Mia's blog was created for two reasons. The first was to keep family and friends updated after her many surgeries, knowing how impossible it was to make phone calls with me in the hospital taking care of a sick infant and Dave home taking care of another infant and two other kids. The second was to tell her story in order to give support and hope to other families facing similar situations.

When Mia was diagnosed during my 16th week of pregnancy, we didn't know where to turn. Like many of us today, we looked to the Internet for more information. Of course most sites were filled with medical jargon we didn't understand and outcomes that were nothing but devastating. Our best source of information and preparation came from a one year old boy's story we read on his mother's blog. It was a the best thing we could have stumbled upon. The pictures she posted prepared us for what to expect on the day of delivery. Knowing how grave our newborn would look, although never fully prepared, gave us much needed mental preparation. The information she posted explained medical terminology in words we could understand and gave practical information from a mother's point of view. We also shared this blog with our family in order to prepare them.

Mia's blog still exists for those reasons, however, it has evolved into so much more! It is a true testament to believing in miracles and never giving up! To never loose faith and always have hope. Time and time again people have told us how they love reading about her progress, her unexplainable ability to defy all odds. No matter what Mia accomplishes, it will always be more than what she was "supposed" to. With her very sparse and abnormal brain, she amazes everyday....she has even left many doctors in awe! In spite of all she has been through, and will continue to go through medically (as we embark on our new medical hurdle of daily growth hormone injections), her personality is filled with elation, love and laughter. Maybe she won't be the smartest in her class....maybe she will. But she will always be an inspiration to so many......A true face of hope!

So, thank you for always following and continuing to spread her spirit and hope!

Holiday Joy

2011-12-27T19:31:00.000-08:00

Christmas has always been a special holiday for me but it's beauty was deepened three years ago when we received the news that Mia would be coming home in time to celebrate with us. I look back and marvel at how far we have come...how strong we are as a result. Our family is able to look at the world through different eyes and we have become better for it. My world consists of four outstanding angels and one who has changed our world forever. Thank you God for such a beautiful gift.
This is just a summary of our holiday.......

She's an old pro!!!!!

Mia did a great job while Gabriella melted down after the first one. She did not like the messiness of it all and stopped after cutting out one cookie! Nicolas and Samantha were a huge help and loved it as usual!

Mia loved everyone minute of it and it was so nice that this year the girls were old enough to "get it".

Can't you just feel her joy? It's so contagious....that laugh.....that smile.....that spirit! When cookie making was finished, we got dressed to go over grammy's for a delicious Christmas Eve dinner and presents. The excitement is too much!

The girls' third Christmas.....every year is more beautiful than the one before!

We finished our Christmas celebrations at ZiZi's house after we played with all our new toys!!!

Our holidays were bitter sweet. Dave's Godfather passed away Christmas Eve after a four and a half year battle with cancer. He was a man of great faith and had an admirable love for life. Whenever we would get together he would always remind me how he and his wife went to church everyday and prayed for Mia. During his last weeks, he told Dave of how Mia has changed people in the family for the better. I am grateful for his constant prayers and now his guardianship as he looks down on all of us.

Although there was sorrow, we had so much joy! All four kids enjoyed the family traditions of cutting and trimming a tree, making cookies, writing letters to Santa, getting together with family and so much more. Nicolas and Samantha focused on giving and not just receiving. It was so cute watching Nicolas and Samantha help the girls through everything. Work has picked up a little for Dave and everyday doesn't seem like such an uphill battle. I am thrilled to be back in a classroom and enjoy being able to hug and kiss Samantha and Nicolas throughout the day! The girls have adjusted and get to spend more time with their grandparents and dad! We ended 2011 on a great note and hope it only gets better from here!

Thankful at Three

2011-11-23T19:54:00.000-08:00

What a whirlwind it has been. Thanksgiving began a time of friends, family, traditions and awesome celebrations! The day after enjoying a wonderful Thanksgiving with family, the girls' third birthday celebration began. Our special friends (who we consider family) drove here from the Albany area to join in wishing the girls a happy birthday. The only one missing was Dave who went hunting. We will leave it up to the girls if they want to forgive him for that!

With grammy's birthday and retirement party being the following day, it was too crazy to fit in a time to have the family over for cake so we decided to have everyone the following weekend. A breakfast birthday in December! It was like Christmas and Birthday all rolled into one. We put our Christmas tree up and then decorated the house with Dora! A little clashy but 'tis the season.

To top it all off, December 1st I started a new full time job at my kids' school. It was a blessing to be home with the girls for three years but it was definitely time for me to return to work and help ease our financial struggles. I miss the girls terribly but I love the classroom I am in and doing what I love in a school that I love! As an added bonus, I am able to see Samantha and Nicolas throughout the day and even attend school masses with them! Everyone is healthy. Life is good and amidst the chaos, my ducks are begining to return to their rows......for now anyway!

And so it goes....

2011-11-22T21:11:00.000-08:00

So, not the best news....not the worst either. We have been monitoring Mia's growth for over a year now. Our initial concern was her very slow weight gain but that seems to be okay at the moment and the focus has shifted to her height. Mia's height has remained the same for a year! She has gained weight but not inches. After blood tests and a bone scan, the endocrinologist has concluded that she has a growth hormone deficiency. I was praying she was short due to her short parents and extremely short extended family on her mother's side (sorry family!). No such luck.

What does this mean? We will have to give her daily injections of growth hormones for the next ten years! I can't help but think this angel has had more than her share of issues and suffered more than any almost three year old should ever have to. Dave and I have decided to monitor her height for another six months to be sure the deficiency will not resolve itself.

If anyone has gone down this road or is currently on it, feel free to leave your thoughts!

2011-10-23T03:53:00.000-07:00

Is it really November? With much catching up to do, I thought I might begin with our fun Fall photos. At our annual trip to Stokoe Farms, Mia participated in the pedal cars, hamster wheel races, corn box, big slide, train ride and so much more. She enjoyed so much more this year than last and she walked almost the whole time!

No more pictures please paparazzi!

Did you see this corn box?

Gabriella wanted to be a witch so, of course, Mia did too!

Look at Nicolas and Samantha!

Still happy after the Halloween Sock Hop at St. Joseph School! You should have seen Mia dancing her feet off with all the big kids and right in front of the DJ booth!

Mia tried really hard to get all the "guts" out of her pumpkin.

Is there more in there?

The final masterpieces!

Now that I have had some fun with pictures, let me attempt to summarize the last couple of months. I must confess this delayed post was partly intentional. Not surprisingly, I needed time to adjust to preschool. The transition was a little rough for Mia but even rougher for me! Each school morning began with, "I don't want to go to school!" followed by resistance in getting dressed. After winning the clothing battle, Mia would go very reluctantly to school. The combination of letting her go and the pout on her face as I left her at school pulled on my heartstrings in ways I can never describe! Knowing Gabriella was there with her helped relieve some of my anxiety. See, Gabriella LOVES school and can't wait to get her backpack on to go! She gloats with every project/accomplishment and even makes up projects for Mia when she is out of the room receiving services (no, she is not always that nice to her sister).

At pick up, I would ask the girls how school was and what they did. Mia's response was always the same! "I screamed mom" and "we had cereal". Gabriella would inform me that they, in fact, did not have cereal for snack! It just seemed that Mia was not as engaged with the classroom activities and she definitely was not enthusiastic about school. Of course Mia was used to Daystar and all her EI therapists. Now she had to adjust to a new building, new therapists, new kids and a new teacher. For Gabriella, she had nothing to compare it to and she just loved everything new! And I imagine it is difficult to get use to a class when you are being pulled for services quite a bit.

Almost two months later, I am happy to report that Mia is more willing to go to school and has begun talking about some of her teachers, which is always a good sign. It seems she has settled into the school routine but definitely doesn't jump up to go. Thankfully, Gabriella LOVES it and encourages Mia.

I think Mia would rather be home working on her new groove for her rock debut!

With all that being said, I am still adjusting and am waiting for the day Mia "rocks out" to her school days!

A Whole New World

2011-09-09T11:43:00.000-07:00

We love waiting with Nicolas and Samantha for their bus!

We're ready!

We love going to school together!

I will take care of my sister!

Look mom and dad, we are already hard at work! Aren't you proud of me?

So the pictures don't lie. All those smiles show two little girls having a great time in their new school. There were no tears from either of them. The teacher just said that Gabriella was a bit clingy. "Clingy" is Gabriella and we anticipated full melt downs so she is adjusting just fine. Me, however..........

I am having a VERY difficult time adjusting to letting Mia go. I don't know if it is just a culmination of the past three years or anxiety over letting her go. Even Dave said it's the fear that she has left her "bubble". Daystar is SO different than school. School is like the "real" world and that is scary to me. I know everyone says she is ready and I know she is BUT I just know things aren't going to be easy for her and I want to shelter her from it. I remind myself that she is tough, tougher than me, and I believe she was born with wings!

The other piece is those girls have been my "job" for the past three years. I gave up a career for them, in particular Mia who needed so much (of course, I would not have it any other way!) but now I have to face MY reality! What do I do now? I am still substituting part time but that is not my ideal situation. Am I ready to go back teaching full time? Find something new? Etc.

Like everything, this too shall pass and my life will find it's new "normal" again and Mia will soar. Until then, I will keep lots of kleenex by my side, skip the mascara and count my blessings. These are all good problems to have. LIFE IS GOOD!

Bitter Sweet

2011-08-19T04:18:00.000-07:00

What a fantastic summer we have had with the kids! I hate that, not only is summer coming to an end, we are closing a chapter in our lives. Mia had her last therapy sessions with her occupational and physical therapists. She "graduated" from Daystar and will begin preschool next week. Gratitude does not even begin to describe our deepest emotions for these ladies who have changed Mia's life profoundly! Collectively, they have taught her things doctors told us might be impossible. Dedicated, these ladies, along with her previous speech and special education/vision therapists, put forth every effort to prove them wrong and they did. Thanks to them, Mia is walking, talking, interacting and learning more everyday.

Instead of writing about my preschool anxieties and how sad our goodbyes were, I am just going to post some awesome summer pictures! With Mia's new mobility this summer and decreased therapies, she was busy having so many "first" outings/visits!

Feeding ducks at Perinton Park

.....and posing for pictures with my brother and sisters.

Big brother Nicolas guides me through the park!

A visit to the beach is never complete without ice cream....I like my first cone!

Wow! I love this bowling thing!

What's everyone looking at? Can't a girl love her chocolate?
Everyone is so proud of me! Mom and Dad are just so sad to say goodbye to my Daystar friends.

Check out these "horsies" at Lollypop Farm.

I tried to be brave at Seabreeze but only made it to the front seat of this cool car. I had to get out before my crazy sister "drove" it around the track

Definitely loved keeping cool in the pool!

Check out my new soccer skills I learned from my brother Nicolas!

I listen as Daddy gives me some tips!

Looking totally cool at Samantha's tennis.

It wouldn't be summer without a trip to the zoo!

Lookin' Good

2011-07-12T19:04:00.000-07:00

Check out these new specs.....

Wasn't it Yesterday?

2011-07-07T20:42:00.000-07:00

Wasn't it yesterday that our little angels were born and brightened our family forever? In many ways it feels like the time has flown by, in other ways, it feels like we have lived a whole lifetime since then. No matter what way I look at it, all my kids keep growing up and the twins are no exception.

With that said, Miss Mia will begin preschool this Fall. Yes, preschool! When I look back on how far she has come, it is nothing less than miraculous! I have so many mixed emotions about school, understandably. However, I couldn't be happier with the outcome of her CPSE meeting (Committee on Preschool Education). Mia will continue to receive her same frequency of OT (occupational therapy) and PT (physical therapy) and she will also have a 1:1 aide! Thanks to her wonderful EI (Early Intervention) team and a very agreeable district, I feel like Mia will be in a good place to begin this Fall and Gabriella will be right there with her!

Of course, the beginning of preschool means the ending of Daystar :( How much I will miss the wonderful women there. We will just have to go back for frequent visits to say hi and show off Mia's great progress that she will continue to make. I have a feeling when Mia goes back to visit she will not want to leave......maybe I won't either. Good-byes are always difficult but this new chapter is going to be great!

News Update

2011-06-30T19:17:00.000-07:00

Other than a short stay in the hospital Memorial Day Weekend for the rotavirus, Mia has been healthy which makes us all happy! Thankfully, she made a quick recovery and was well for the Stroll for Strong the following weekend.

The Stroll was a huge success! Mia had over 120 "Marchers" who raised $6,667.00! Our awesome friends and family supported us in the less than pleasant, rainy summer weather. Here are a few pictures:

BIG NEWS..............Mia and Gabriella are in BIG GIRL beds. Although I was very excited to give the girls a long overdue room makeover, I was not excited to admit my babies are now toddlers. Just like the home shows, we have before and after pictures for you.

We have wooden letters for their names we still have to add above their beds.

EVEN BIGGER NEWS........ the girls will be starting preschool in the Fall. Yes, preschool!!!! I really cannot believe this! Mia has had all of her evaluations and her CPSE meeting is set for this Wednesday. This means you should get an update within a week or so instead of 2 months!

Parents Describe Daystar as their Hidden Gem of Hope

2011-05-10T04:25:00.000-07:00

What an amazing day! Dave and I were asked to speak on Daystar's behalf at their fundraising event, The Daystar Derby. It was difficult to find the words that expressed our immense feelings of gratitude but hopefully it came across. In addition, Nicolas and Samantha spoke to the 700 guests in attendance! We are so proud of them. I said in my speech, "I feel blessed that Mia has introduced us to a group of woman who have touched our lives in ways many cannot understand. They have left an everlasting impression with each of us." Here is a news clip from the event

Parents Describe Daystar as their Hidden Gem of Hope

For those of you who aren't aware of what Daystar is, visit their website at http://www.daystarhome.net/. There is a short video on the home page titled "Where Love Shines...Miracles Happen". Mia is a part of the video as well as Dave and I.

Of course, Mia's time is winding down there. I just can't believe the girls will be starting preschool in the Fall! The school district called me last week and they will be scheduling her evaluation soon. As far as we are concerned, Mia has reached beyond her limits!

Our Little Celebrity

2011-04-05T13:16:00.000-07:00

It has been recommended that we get Miss Mia her own personal agent. Of course Dave just wants to know if we get a cut of her celebrity earnings!!!!

Mia's success story has captivated so many, not just her her mom and dad :), that it seems to be spreading over the web, in newsletters, etc. She just brings smiles wherever she goes. So, here is her line up!

In March, she earned a place on the U of R website under "Patients in the Spotlight": http://www.urmc.rochester.edu/childrens-hospital/giving/patients/MiaFallone.cfm . The annual Stroll for Strong Kids is in full fundraising mode. Mia's Marchers will participate for the third year and we hope to be bigger and better than ever!!! So far we already have a team of 26 and we still have two months to expand. If you would like to join our team, here is that link: http://www.helpmakemiracles.org/index.cfm?fuseaction=donorDrive.team&eventID=800&teamID=9304. The more the merrier!

Also in March, Mia's story was featured in the Daystar newsletter. Daystar, for those who don't know, is a one of a kind daycare for medically fragile children. We absolutely LOVE, LOVE the phenomenal care she receives and the beautiful staff that work there. They also are gearing up for an annual fundraiser, the Daystar Derby, where Dave and I will speak on their behalf. We will share the stage with all four of our children and our older two may have a few things to say as well. Today when I picked Mia up, one lovely woman who works there had taken this picture with her phone. Yes, they take pictures and videos of all her great moments and milestones so we don't miss them! I mean......what daycare does that? Besides, look how happy she is! Here is the link to "Celebrating the Many Miracles of Mia": http://docs.google.com/viewer?a=v&pid=sites&srcid=ZGVmYXVsdGRvbWFpbnxkYXlzdGFyaG9tZW9yZ3xneDo3MTUzYzFkZGE4NGU4YmU5&pli=1 You can find Derby information there as well. Tomorrow Dave and I will participate in a promotional video produced by Dixon Schwabl. I'm not excited to be on camera but I am excited to share our awesome experience at Daystar with others! Although it has not happened yet, we have been asked to speak with a reporter from the Webster Post about Mia's success. So, stay tuned for more ......

Piece of Cake!

2011-03-02T11:41:00.000-08:00

Miss Mia had corrective eye surgery today. After a year of patching, the vision has improved significantly in her weak eye.The hope is that this will align the eyes so that she will now use them equally, keeping the vision strong in both eyes.

Always her bright and cheery self!

Almost time for surgery! Daddy is ready to go in.

All done and on the way home!

Just a couple weeks for healing.

A Post You Can't Miss!!!!

2011-02-14T10:45:00.000-08:00

Hope you enjoy this video I put together of Mia. It speaks for itself!

Mia's Climb!

2011-01-22T05:23:00.000-08:00

"Ain't about how fast I get there. Ain't about what's waiting on the other side. It's the climb!"

How is it Possible?

2011-01-13T20:09:00.000-08:00

No speech? No special education? No occupational therapy? Only physical therapy? I cannot get over the anxiety I am feeling over Mia's most recent news. It is wonderful news......amazing really.......yet it leaves me unsettled. How is it possible?

We know what the doctors have said. We have seen pictures of her brain compared to that of a "normal" brain. We have read the prognosis for severe congenital hydrocephalus and VATER Sydrome. We have held her frail body and enormous head that prevented her from sitting up just one year ago. We have worked through countless therapy sessions and doctors visits. Nothing adds up, nothing makes sense! How can we be done with Early Intervention with the exception of physical therapy? Given her medical diagnosis, how is this possible?

Is she really ready to lose that support? You may be thinking that I should be happy for her and so proud of how far she has come. Of course I am. My joy and pride are immeasurable! I had those way before she began disqualifying herself from services. I look at her everyday and think what an absolute, beautiful miracle she is and I marvel at everything she accomplishes. She is my hero in every way. But I also worry! Worry that she still needs that constant support system that has been in place for her from the day we brought her home. Worry that the gap she is "supposed" to have is just around the corner or maybe even down the the street a little ways. Worry that she is going to fall between the cracks. You know, that kid that doesn't quite qualify for services and next thing you know is falling way behind.

As her mother, I watch her constantly. I see things that others don't or maybe I just worry about things that others don't. My evaluation is completely different! I know she can repeat anything I ask her to say. She tells me she is "high maintenance" because I asked her to say "high maintenance". She is a parrot with exceptional pronunciation. She can say Christmas tree but every tree and every plant is a Christmas tree! I have no concerns with her expressive language it is her receptive language that I question. Is she really understanding and making connections, using higher level thinking (for a 26 month old)? I don't see a lot of independent thinking. She memorizes and repeats. She mimics everything; her play, her speech, her socialization. Her fine motor skills have improved greatly. She can manipulate puzzle pieces and place pegs in a hole. However I worry about how her hands shake when she raises them to a certain level. I see how at lunch she cannot eat a bowl of soup without spilling most of it. Her sensory issues have improved but she continues to play with hair and is now pulling it out of her head whenever she loses the strand she had. She loves to collect things and will "collect" for hours. These are just some of things that worry me. They don't "qualify" her for services but they "qualify" as concerns I have.

We have Mia's IFSP meeting next Friday because, of course, we are now in the process of trying to make a decision for preschool. You may recall I had this all figured out (ha, ha!). Well, she may not even qualify for the programs we were considering. Yes, just when we thought we had our preschool ducks in a row, the Man upstairs, once again, is letting me know who is in charge!

I would like to end with a quote from a book, Blue Sky July, a wonderful friend is letting me borrow.

"I realize miracles are so commonplace we barely recognize them anymore, and near the circles of mothers anxiously comparing milestones at the school gates, I see how we live in time where normal is not enough, and we are never full.

Joe gives me insights I could never have understood without him, and he gives me heartbreak. To separate these two responses would be impossible. He is equally beautiful and terrifying" (p.42)

Celebrating Miracles!

2010-12-26T16:47:00.000-08:00

Although there is always some hardship in our life, this Christmas we are celebrating the many miracles of Mia! The previous two Christmases were surrounded by hospital stays and surgeries. This Christmas is surrounded by sweet successes. Mia recently tested out of speech, passed her EEG (no sign of seizures) and may soon test out of special education. There are always challenges for Mia, but for this holiday season, we are celebrating her soaring speech abilities, emerging walking skills, precious smiles and contagious laughter! She will forever be our "special" miracle, our angel.

All four of our kids bring us immeasurable joy!

They light up our everyday and fill our hearts with the greatest love possible.

Most of all, they are happy and healthy.

This is the greatest gift of all!

If that is not the best Christmas ever, I don't know what is!

A Thanksgiving Celebration For Sure!!!

2010-12-01T20:44:00.000-08:00

Thanksgiving Day was also the twins' birthday!!! How appropriate is that? I just cannot believe how much has happened in their two short years! I think back to where Mia was two years ago, one year ago and six months ago. It is nothing short of amazing!

To say I am thankful for the things in my life is such an understatement. I am married to the best man I know, my soul mate. I have four outstanding children that complete my heart, a phenomenal, loving family that would do absolutely anything for us and an amazing group of supportive girlfriends. My family and I are all in good health. So, what word do you use to describe blessings that are so profound? I haven't found one. I just know that my heart is happy and full this Thanksgiving.

Happy birthday girls!!! I love you with all my being!

Preschool Update

2010-11-19T20:50:00.000-08:00

I have been blessed with a group of extraordinary friends. We talk about our lives, try to solve each other's problems and celebrate our families and accomplishments. We laugh through the good times, lean on each other through the bad and shed many tears, both happy and sad, together! If you have girlfriends, you know what I am talking about.

My wonderful friends patiently listened to all my preschool worries. Their honest input helped me step out of my mind set. I needed their points of view in order to see all sides. After a long discussion and hours of analyzing what was said, I finally had an epiphany.

Since Mia has been born, we have said "yes" to everything that has been offered to her. In our eyes, the more services the merrier. We agreed to accept whatever Mia was offered so that she could have every advantage possible. Somehow, we lost sight of that when thinking about preschool. With Mia doing so well, we felt like we did not want to deprive her of the opportunity to attend the same school as her brother and sisters. What we should have seen is, that we are not depriving her by putting her in a different program, we are continuing to take advantage of every service offered. If she can get a more intense program that will continue to bombard her with language, socialization, therapies, etc, then that is where she needs to be. To put her in the same school as her older siblings would deprive her of the intense head start she needs.

Of course, part of what clouded our thoughts was doing what is also right for Mia's twin. That too has become clear (thanks to one of those wonderful girlfriends). Her words kept ringing in my head, "Sounds to me like you are saying that you want them together. You don't want to split them up." I guess I was saying that all along but couldn't hear myself (don't ask me how that happens but it does). I don't want them separated! They tell me everyday, in their own two year old ways, that they don't want to be separated.

Thanks to my friends and my mind's countless hours of sleep deprivation, we are looking into CP of Rochester's inclusion program. We have heard only positive feedback from other parents.

Now off to bed!

Reality Check

2010-10-28T09:45:00.001-07:00

Ducks in a row! Who am I kidding? Reality check.....let's face it, my ducks haven't been in a row for a very long time. It started when we lost our first of five pregnancies. Then it was the twins.......then the news of Mia......then the recession. I must face reality. This list will continue to expand and I will have no row....no ducks!!!!!!

As a small business owner during a horrible recession, Dave is struggling. We have tried to make do but the time has come for me to help. I will be starting a part time job in another week. My stomach is in knots and I have immense anxiety about leaving Mia. I hated leaving all my kids when I returned to work but this is even harder. I can't explain it and maybe I don't have to.

She has come so far and I just fear life will become too crazy to give her what she needs. We will be giving up her Early Intervention class at Mary Cariola, which has been so good for her, story time and together time! The girls will be seperated even more and even before the whole school thing!

Will I be out of touch with her therapies? Who will take her to her appointments? Who will monitor her eyes, her shakey right hand, her funny bump on the back of her head? How can I leave her when she is so close to walking? The list goes on. She has been my job. Her and her brother and sisters.

The problem is I have a difficult time not being in charge. I don't want anyone else to do those things for her. I am selfish and a bit of a control freak! I am very blessed to have wonderful friends and family who will help us figure all of this out. Most importantly, we have Daystar!!!! I breathe easier when she is there and I know they will monitor her and take such good care of her. They will practice her walking, read her books, sing her songs and love her. I cannot say enough about how absolutely wonderful they are there! What more can I ask for?

For now I will take it day by day and things will work out, they always do....maybe not how I planned them....but they do.

What's Next?

2010-10-05T10:02:00.000-07:00

Mia with Uncle Curtis

Believe it or not, the next thing on our list is preschool! OMG, I cannot believe this myself!!! The girls are going to be two and you're probably thinking it is too early to be thinking about this but it really isn't. We have many questions and much investigating to do. Registration for Fall 2011 usually begins around February and, for anyone who knows me, I must have all my ducks in a row by then.

Because the girls have late fall birthdays, the original plan was to send them to preschool when they were 3 turning 4 (2012). However, as God continues to remind me that I am not in control, we have learned that Mia will have to enter Kindergarten in the Fall of 2013. If she does not enter kindergarten at that time, then she will have a gap in services. We, of course, do not want to lose services for any amount of time. We still could hold her off but I would rather she have two years of preschool before she starts kindergarten. In addition, she will age out of Daystar when she turns three.

If you've followed me so far, I may lose you now. Currently, our older kids attend a Catholic School. I am not sure how accommodating they will be for Mia and/or if they can even meet her needs. If not, our dilemmas are: Do we keep the twins together?; Do we put Mia in the public system by herself with all three of her other siblings going to Catholic schools? This would mean she would ride a separate bus (which she may anyway).; Do we pull the older kids out of the school they are in to keep all the kids together?.

My heart aches to think of Mia fending for herself without the support of her siblings. As Dave has said, "Of all the kids, she would need her brother and sisters the most." It also saddens me to have to separate the twins. They are finally starting to really bond and look for each other regularly now. Is it fair to always keep the girls together for the sake of Mia? Maybe they would prefer it that way. Maybe not. Maybe Mia's sister would resent that.

There are no answers, just a lot of unknowns and decisions we have make and pray they are the right ones. It is a year away. We do not know what Mia will look like in a year but we do know that she will, at the very least, need a 1:1 aide, OT and PT services. Currently, she is about six months behind in her receptive language which isn't bad. If she continues to progress in her language, she may or may not need speech. However, this year is a crucial one in language growth and we may begin to see more gaps. Then, again, she has proven everyone wrong over and over again.

When we think about how far Mia has come. It is nothing short of miraculous! First she was not suppose to survive my pregnancy, then she was not suppose to leave the hospital, then she was suppose to be profoundly physically and cognitively impacted. This little girl has fought so hard in her short two years. Nothing has been easy but she rarely complains. Her personality is angelic, her smile contagious. She lights up a room and steals your heart. As her parents, like with all our kids, we just want to protect her from the cruel harsh world.....from a life of struggle. Unfortunately, she may always struggle and we will have no control over some of it. For now, we will try our best to give her every opportunity and chance at success that we can.

This school thing is killing me! How can we do the right thing for her, for all the kids and yet not desert her? Maybe I'm being overly dramatic, I have my mother to blame for that (who told us last night she cried during every Incredible Hulk episode). I try to mostly focus on the positive with Mia....all she has overcome and accomplished. But, of all things, school for Mia scares me the most!!!! It is our first big decision that has a profound impact on her growth and development academically, socially, emotionally and personally. We will try to get it right the first time!

Summer in Review

2010-08-22T12:55:00.000-07:00

Oh my, it has been over two months since my last post......where did the time gone? We had so much fun this summer that it went by without enough hours to fit everything in. Trust me, I attempted to post many times but something always called me away (four children perhaps? maybe the house? the great outdoors? appointments? - you name it). Let's just say life!!!! All I know is, although Mia was sick at least four times this summer, we did not have to make one trip to the ED. We have not had a hospital trip since April and we have been surgery free all year!!!!!!! This has made a world of difference and has allowed us to really enjoy life with the kids, especially when all kids were home! I will admit, it was a crazy house here but a happy one!

Mia's therapies have been going remarkably well. With speech therapy, she acquires new vocabulary weekly, sometimes daily! Her receptive and expressive language seem right on track. It is amazing! Her special education instruction also seems to be soaring, putting her at an age appropriate level as well. Occupational therapy has increased her fine motor skills and strengthened her hands, fingers, etc. She is still a little behind but continues to improve. Vision in her right eye seems to fluctuate and we are still patching 2 hours a day...when she lets us. She is not very good for mommy, ripping that patch off almost instantaneously! We fight for a while.....sometimes I win.... but most times I lose! As you probably can guess, she is a perfect angel for our friends at Daystar and she keeps the patch on with no problems! She will need eye surgery but her Dr. would like to continue patching to see if we can improve the vision more before we do that. Mia started getting massage therapy and loves it!!!!!! It has helped loosen her muscles, especially in her neck, which are very tight from holding that heavy head up and has improved her sensory needs. She is also doing aqua therapy which has helped immensely with her physical therapy. In the water, she is able to move more freely and is discovering new ways to manipulate her arms and legs. Of course, this is a work out for me as well. I start the "getting ready" process an hour before our lesson. I pack up all four kids, diaper bag, towels, etc and head to the Y. We ALL get in the pool! It takes two instructors and myself to complete our 45minutes lesson. One instructor and myself work with the babies and the other instructor takes the older two. When lessons are over, we all head to the locker room. I get the babies out of their suits and swimmies, monitor the older kids and then get myself changed. I wish I could read peoples' minds when they see us. I imagine some thoughts might be:"Wow! She's good!", "What a train wreck!", "I'm glad that's not me.", "I remember doing that with my kids.", "Oh, that poor woman.". That's just a few I've come up with.

Last but not least, physical therapy! Although Mia's physical abilities are at least 12 months behind, she has made excellent progress this summer. Mia is now able to "scoot" instead of crawl with her head. This came about after she rubbed her head raw one weekend. I think it hurt so much that she adapted rather quickly. Christmas.....walking? Mia is working so hard in hopes to be walking up to Santa's lap!!!! Now, I don't want to deceive you, walking may be with assistance, such as a walker or crutches but maybe not. We just don't know. She will let us know what "walking" means to her. Right now she is pulling up to a stand and bearing more weight. She will take steps when supported under her arms and can even walk along furniture with support. We will keep you posted.

Hamster Wheel

2010-07-01T21:05:00.000-07:00

Husband? Who is that? Sleep? What is that? Sit.....NEVER. Yes, like everyone, life is crazy and busier than ever. I feel like a hamster in her wheel except I can't figure out how to make it stop spinning so that I can get off! This is my life, as I am sure many of you can relate.
Even the girls get pooped from all the spinning (the messy house is a constant side effect)!

I will start the spinning wheel with Mia's Dr. appointments. We met with her wonderful cardiologist. It began with just a weight check that put Mia over the edge as well as her sister, who tagged along to supervise Mia's visit! They tried to do an EKG but unfortunately were unable to because Mia was hysterical crying (and so was sissy). The Dr. was able to listen to her heart with his stethoscope and get her to smile maybe once or twice. Because Mia shows no signs of cardio stress in her daily life and her heart sounds good, tests are not imminent. She should have an ultrasound and an EKG but will have to be sedated. If she needs to be sedated at some point for another reason, we will schedule those tests. Otherwise, we will just continue to monitor her.

Next, we met with Mia's pediatrician. Mia is below the 2% in both weight and height and is falling off her curve a little bit. We scheduled an ultrasound and an appointment with an endocrinologist to take a closer look and make sure we weren't missing anything. The ultrasound was not that encouraging. After much searching, they were not able to find her uterus or ovaries. We were told that this does not mean she is definitely missing both. A baby's ovaries are very small and can be difficult to see but the uterus is larger and usually visible. However, it still could have been missed if something was blocking it. The hormones produced by the ovaries will not effect her growth until she reaches puberty so, although it would be nice to know definitely, we have time to do a repeat ultrasound when she is older. For the present time, we need to continue monitoring her growth and do some more testing. Because she has always been on the small side and has not fallen to extreme levels, the Dr. is going to wait to get more blood work. He doesn't want to put her through more testing if he doesn't have to. She could just be delayed and will catch up on her own or she may just be genetically small like her parents. If she drops further, we will know that something more serious is going on. We are going to go for a bone x-ray in a couple months. This will also help answer some questions. For now, we are increasing her calories and watching her grow (hopefully fatter and taller)!

We had a follow up with Mia's neurosurgeon in Syracuse. This Dr. has it all, skill and bedside manner! She gives us a big hug every time we see her! What surgeon does that? She is shorter than me and wears a smile from ear to ear every time we see her!! She always asks me to e-mail pictures and updates. She gives us her cell phone number in case we needed anything. Of all the doctors we deal with, she is unique. Of course, we love her! It helps that Mia's shunt has had no problems since Dr. Tovar-Spinoza placed it in. Mia continues to do well and the shunt looks great!!!!!! Yes, this makes us extremely happy and relieved.

Finally, the eye doctor. We have been patching Mia's eye left eye for 8 weeks. Her right eye turns in and appears weak. After patching for eight weeks, the eye continued to turn in more. We are going to patch for another eight weeks. We patch her eye two hours a day. Hopefully we will see some improvement this time....if she keeps the patch on. By the end of the 6th week, she had figured out that whenever I walked and/or looked away, she could whip her patch off. Even sitting with her for the full two hours, she pulls the patch off constantly. So, we battle and sometimes...she wins!!

That pretty much sums up her doctor's appointments. I know it is a lot of information at once. I should have posted after each appointment but I just can't seem to do that. In fact, I started this post over a week ago. I am ALWAYS interrupted or falling asleep and have to come back to it.

Mia's therapies are going very well. She is now using a stander, in addition to her walker, in order to increase her weight bearing. She uses the stander for about an hour a day and we are trying to increase that. Although, I have to be honest, I am having a hard time fitting everything in: 2 hours of patching, an hour of standing, time in the walker, therapies, baths and trying to get outside in the pool with the other kids. All of this between tennis, soccer, swimming, library and play dates for the older kids. Anyway, these are the busy days of summer! Mia's speech is growing by leaps and bounds. She tries to copy everything sissy says. She even repeated her first string of three words, "I don't know", which sounds like all one word! But we know exactly what she is saying. And if you can believe this, she is beginning to count with me!!!

Every day I am amazed by her progress and tolerance of all she endures. She smiles constantly and often chants, "happy, happy, happy"! It is simply contagious. My heart glows when I see how happy she is and how she is learning to adapt. She does not crawl, stand or walk but she gets where she want to go. She will scoot, roll and crawl with her head. As she works the floor in the library or the grass outside, I get many looks! Adults are wondering but afraid to ask and kids are curious and shy. What they don't realize is that, like a typical toddler, she does not want to be strapped in a stroller. So although it disturbs others to watch, I feel she should be able to explore the only way she knows how. Does it gross me out at times when her head is buried in the filthy carpet? Of course!!! In fact, most times that's all I can think about. But I don't feel the answer is to keep her contained either. If Mia needs to adapt, so do I. I just wish I could do it with the same innocence and grace as she does. All I can do is pray that the world not be cruel to her as she grows, but I know it will be. So then I pray that she has the strength and confidence to forge ahead and be the beautiful little girl she is! May she realize that she can fly without wings.

I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit.-Dawna Markova

Lovin' Life

2010-06-03T19:54:00.000-07:00

Notice anything different? Bows.................NO HELMET!!! Mia is done with helmet therapy.

After a few more conversations with Mia's doctors, it was decided that there would be no benefit to continuing her helmet, even with her fontanel still open. Any pressure or head increase will be addressed through her shunt. Now I can play with her hair even though she would rather me not:)

We are all enjoying the beautiful weather. Mia loves to look at trees, splash in the kiddie pool, swing and go for walks with her brother and sisters. She has learned how to push her Pony Walker forward. It is WONDERFUL!!!! She can move around outside and in the house. Her favorite thing to do is speed down the driveway on her new wheels. It is just amazing the amount the of progress she is making. We are so happy for her.

Mia is wearing an eye patch for 2 hours a day to help strengthen her right eye which has been turning in. Some days she tolerates it better than other. She definitely knows how to pull it off and ALWAYS pulls it off the second I walk away. So, I have to sit with her the entire two hours and make sure she keeps it on. Who said little brains weren't smart?

The best part of May was Mia moving forward in her walker. So far the best part of June is the 14th Annual Stroll for Strong Kids. Although Dave, the kids and I have participated for eight years, this is only our second year participating as a team, Mia's Marchers. Our team grew from 24 last year, raising $2,126.00, to 48 this year, raising $3,385. Way to go Mia's Marchers!!! It was so moving to see all the yellow shirts supporting Mia. We are so blessed to have such an amazing support system of beautiful friends and family. I cannot find the words that express how eternally grateful we are for them and for all of Mia's doctors, nurses and therapists. Yesterday, we honored them and all the other families they have helped. We have met many families during Mia's stays at the hospital. Each child has had to fight and overcome so much in their short lives. It just doesn't seem fair. They truly are my heroes!!!

The Good , the Bad and the Ugly

2010-04-28T18:32:00.000-07:00

Okay I know I have neglected Mia's blog!!!! In fact, you probably have all given up on me, thinking I was just done with posting. Well, lucky for you, I am not done AND this one may be long!! I am sorry but so much has happened!!

Mia is just getting...."SO BIG"

Let's start with the good!

Mia is sleeping through the night!!!!!! This is HUGE. I am starting to feel like a new person. I have cut down on the caffeine and am trying to actually catch more than 4 hours of sleep a night. Mia began sleeping through the night about three weeks ago and last week we decided to move her out of our room (yes, she was still in with us) and put her back with her sister! Not only do we get to sleep, we get to shower and dress on a daily basis in our OWN room. How great is that? One of these nights, I will even take advantage of our soaking tub...okay, now I'm going a little over board....there is no time for that, especially when you have a blog to keep up with(ha, ha)

Can you say, "on the move"? Mia is moving ALL over! She rolls, scoots and pushes off walls, covering every inch of the downstairs. When I am making dinner, she will roll her way over to me and then.....SIT HERSELF UP!!! You may not know but this is also a very big deal. This means she is not always stuck on her back until someone rescues her and sits her up, she can just do it herself. Not only is Mia moving on the floor, she is now sporting a brand new vehicle! She looks fabulous in her new Pony Trainer!!! Right now she is working on her moonwalk, moving backward is just her style! Like a true girl, I am sure her style will change. With a little help from her Physical Therapist and mommy maybe she will walk forward this summer.

Yes, the good keeps on coming!

Mia is communicating more. Her vocabulary includes these words: kitty, up, side(stands for outside), on, all done and her two favorite words are hi and ball. She signs "more", "all done" and "eat". She will push you away when she is done with you. She LOVES books and pretends to read (this is my favorite-so cute).

And finally, Mia has graduated to the big tub! She is now sitting up on her own and she doesn't need her support tub anymore. The best part of this....Gabriella and Mia enjoyed their first bath together yesterday. I just cried looking at the two of them in the tub together. Oh, how far we have all come!

It's the little moments the girls get to have together that melt my heart. Not only is Mia making fabulous gains, she can now bond with her twin sister, something I have been longing for for 17 months! Until recently, they have done most things separately. They played separately because Mia was so immobile and Gabriella just went on her merry way, paying no attention to her sister. They bathed separately because Mia needed so much support, which also meant double duty for mommy. They slept in separate rooms and on different schedules (they still are on separate schedules). They still ride in separate vehicles, Mia in her special Frog stroller and Gabriella in a backpack(it is too hard for me to push two strollers and a shopping cart). How sweet it is to see them interacting more and enjoying time together. Of course, they fight more too!

Now the bad!

Mia has finished her first helmet therapy. After 13 weeks, we see a significant difference in the shape of her head, although it is far from perfect. It has been recommended that she continue in a helmet until her fontanel closes (the soft spot on the top of a baby's head). Due to her severe hydrocephalus, she has a very open fontanel and there is no way to know when that will close up. From this point on, the helmet will serve no purpose in shaping her head but will prevent her head from growing due to increased pressure. I was disappointed at this news. Although she looks adorable sporting her butterflies, I am anxious to grow her hair and adorn her with hair accessories. I am also concerned about the warm weather, rashes and over heating. But, her neurosurgeon and cranial/facial doctors are both in agreement that this is what is best for Mia.

Monday, Mia will visit the ophthalmologist again. Her right eye has been turning in. This was happening in the Fall but had corrected itself after her shunt replacement at the end of the year. Unfortunately, we have been watching it get worse. That eye also tears quite a bit. Her vision therapist expressed some concern as well so off we go. Hopefully, it will be something minor!

Now for the ugly!

The day of my son's birthday, we ended up in emergency with Mia. Yes, parties had to be postponed and once again, my oldest kids had to roll with the punches, even on a birthday. Thankfully, they have wonderful grandparents who helped make the night special and carried on a special birthday without us.

As for Mia, her night was much less pleasant. I was thoroughly disgusted at Strong's ED! Yes, I know these are harsh words but well deserving! Mia had been running a fever for two and a half days. She had already seen the doctor once and we were just "playing it by ear" since the doctor found nothing wrong with her examination and her white counts were normal. When her fever reached its peak at 104.9 and she began vomiting, her doctor quickly sent us to Strong!

After waiting for a few hours, they did an x-ray of the shunt to make sure there were no knots in the tube or clogs. We waited over two hours for the results. In the meantime, I asked if Mia could have something to eat and/or drink seeing she hadn't eaten much since her fever began and she had vomited what little bit she did have. Of course, she could not have anything in the case that she may need surgery.

Two hours later, they came in to take her for a CT scan, a normal occurrence for Mia. Now, we had just had a scan two weeks prior so Mia is very used to this machine. By saying she is used to it does not mean she likes it! In fact, she HATES it!!! She screams every time! They ALWAYS strap her in like a mummy and tape her head tight so she cannot move, although she tries very hard!!! Well, the technicians on duty that night, decided they didn't want to wrap her tight. Their plan was to wait until she calmed down. I kept telling them that will NEVER happen, unless she screams for hours. They taped her head and left her screaming in the machine for 25 minutes. At that point, I asked them to remove her if they weren't going to take the scan. She already has a fear and this was definitely making it worse. Not to mention the fact that CT scans are going to be frequent occurrences for the rest of her life! So, they sent us back with no scan (this has never happened before).

When we got back, they wanted to catheterize her and get blood. Well, as you can imagine, the cath was unpleasant to say the least AND surprise, surprise.....SHE HAD NO URINE! I had only been telling them for 5 hours now that she needed something to drink. Luckily, she peed, on her own, after they removed the tube. It was very little but they were able to catch it. Next, the blood and IV line. Basically, after much screaming, they got the line in. In the meantime, they took the blood and set it aside. By the time they got the IV line secured, the blood they took clotted and could not be used. They were not able to flush the IV line so they couldn't use that either. They decided not to torture her anymore and just sent her home. The bottom line is, we left there with a shunted baby still presenting with a fever (which they hadn't taken in two and a half hours before they discharged us), no CT scan and no blood work. Fever, CT scans and blood work are actually critical when diagnosing a shunted child! That trip to the ED was absolutely useless! Thankfully, her fever broke the next day and we chalk that experience up to just "another day in the life of Mia"!

Back to the good!

Now, I must end on a positive note! I would like to share Mia's 6 year old sister's words. Last week the kids and I were in one of our deep discussions(we were doing a service project for the Bethany House), talking about God, poverty and being angry with God when things don't go well. I explained that sometimes people can be angry with God and blame him and sometimes you can see it as God trying to teach us something. I gave the example that we could be angry with God for making Mia the way he did but we aren't. She quickly interrupted me and said, "I know why God made Mia different. He has to make people different because He doesn't

want everyone to be the same. That would be boring. And, He wants to see how the parents love them when they are different. It's like I've always said mom, Miama is SO cute with that BIG head and little face and BIG head and little body. She is just so cute!!! God gave her to us because we love her and we think she is just so cute." I was almost in tears. I could not have said it any better!!

Life is Good....Vacation Makes it Better!

2010-03-19T07:28:00.000-07:00

After having a sleepless night with Mia and leaving with this newly developed rash/sore, anxiety was setting in. Of course whatever was going to be..... was going to be. We packed the car and at about 5pm, we all piled in and headed south. Dave was ready to get some pavement under those wheels and cover some distance. Well, that drive only lasted an hour!!!!! An hour! Really? Yup!!! The babies were so cranky we decided to stop for dinner and a stretch and put on clean diapers (the babies, not us -ha, ha). We were hoping, praying, that this break would settle everyone in for the night. If not, we were in for a VERY long drive to my Uncle's house. With our vacation getting off to a rough start, I was thinking, "oh no, what have we gotten ourselves into?".

Lucky for us, the babies settled into a movie with the big kids. At about 8pm it was lights out and everyone fell fast asleep! Dave drove through the night, I only helped for a couple of hours in the early morning. When everyone woke up, around 5am, we were in N. Carolina. Now we just had to make it through the day. We stopped for breakfast in South Carolina and then drove straight to Uncle Tony's. We arrived to an empty house at 3:15. Can you believe that?! My uncle said he NEVER expected us to be there so early but I believe we really did scare him away! He' s not fooling me. If we didn't scare him, I know we scared at least on of the guys who knew he would now be bunkin' with the family of 6! Yes, it was my two uncles, their two friends and all of us spread between two bedrooms and many couches.

With the drive behind us and the guys back home, it was time to unload, settle in and start our vacation! The first couple of nights were cold, in the 30s, but it was in the 60s during the day. Monday and Tuesday the temperatures were just above 70 so we went to Magic Kingdom Monday and Animal KingdomTuesday. Wednesday was 80 and my uncle took us for a drive on the boat!!!! The kids got to drive and play Captain. They LOVED it! Thursday was a wash out so we went to the Aquarium. Friday was also a wash out but we were busy packing to come home :( Yes, with four kids, that takes ALL day.

Mia didn't care for Magic Kingdom but had a better day at Animal Kingdom. She HATED the tram and protested the large crowds and noisy speakers at the attractions. Overall, she was a trooper and tolerated all of it (with some encouragement from all of us). Her rash was very bad on Monday but then cleared up little by little. Her sore disappeared within a day after arriving, phew!!!! All the kids were amazing!!! We are just so blessed.

It was so refreshing to get away. No doubt, it was a lot of work but so worth it. Dave and I didn't feel like passing ships, there were no therapies or doctor appointments to run to and best of all, I did not have to cook, clean, do laundry or grocery shop. Is that heaven or what? Not to mention, Dave was there to help manage the babies. The older kids were just beaming all week and they were so good! The family time we spent, not only with ourselves, but with my uncles was priceless! I am thankful to have those memories, not only for myself, but for my children!

Here is Mia enjoying her

first vacation!!!!

And Away We Go!

2010-03-02T09:00:00.000-08:00

I can't believe over a month has gone by already! Like everyone, life has been busy. Mia has been pushing forward with her therapies. She is saying, "hi, Tecla (her nurse at Daystar)," "up," "night, night," and "kitty kitty." She LOVES her special education teacher, and so do I. They sing songs together and play. This has helped her vision, socialization, understanding of cause and and effect and her communication skills. Thanks to her physical therapist, Mia is sitting up like a big girl!!!! She does topple after awhile but continues to build strength daily. She is amazing!!!

Mia has a helmet check every Monday. She has been tolerating the helmet well, however, she has developed a rash and a sore. She has earned a few days out of the helmet in order to heal. The pediatrician gave her a topical ointment and an oral antibiotic to speed up the healing process. If she doesn't heal or if the sore gets infected then we will have to discontinue the helmet. Obviously, we are praying that doesn't happen. Of course all of this is happening right before we leave for Florida.

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Two Days Later

You know, I try to stay positive. We plug along, always pushing forward to the next task, the next stage, the next appointment, the next procedure, etc. It has been a whirl wind for us and we've managed, for the most part, to stay strong and positive. Our faith has been tested but we have not wavered. But last night was it! I lost it! For the first time, I was wondering what I did to deserve this. Why, God, can't you give us a break? Does everything have to be hard?

So, here we are planning to leave for Florida. Mia has not had any issues with her helmet until Monday (I already explained all that). Yesterday was Mia's first full day on the antibiotic. When I picked her up from Daystar, they told me that she had diarrhea and her bottom was extremely sore. I figured okay, we can handle that. Well, her diarrhea was AWFUL. I mean every 5 minutes she was running and her poor little bottom was on fire!!! She cried for over 3 hours straight. I laid on my bed with her and continuously cleaned her bottom and loaded it with Desitin. I kept her diaper off to try to give it air. I was up all night with her.

Meanwhile, my head is just screaming, WHY????? Why is this happening the night before we are suppose to leave on vacation? This is our first vacation in three years. Haven't we earned a vacation? Why does this have to be hard too? Can't we just have something not be difficult? I know it seems minor but at the time it wasn't. I still had loose ends to tie up, laundry to do, etc. (Anyone who has ever packed for 4 kids, including a child with special needs, know what an undertaking this is). I was suppose to put the girls to bed, bring the cat to my mom's, do a few things and go to bed early so I would be rested in order to take my turn at the wheel. Not to mention poor Mia!!!!! I felt so bad for her last night. I mean she just could not stop crying. It was heart wrenching. Her bottom was so sore and I kept thinking now she has to sit in a car seat for 24 hours. Not to mention dehydration and the fear of a yeast infection. Let's put a few more things on our plate! Why not....we can handle anything, right?

So, here is the plan. We are not going to give her the antibiotic but we will bring it with us. I will continue to put the ointment on her sore and pray that will heal it. If not, I will have to call her pediatrician and ask what to do next. I have googled all the children's hospitals in the 6 states we will be passing through in case we need them. This was already in the plans but now my anxiety has increased 20 fold!!!!

Okay, we are packed and ready so I guess I am done ranting. I am also feeling better now that I have shared my frustrations! Thank you. You have all allowed me to restore some faith.

Wish us luck!!!!

New Year, New Hope

2010-01-21T07:16:00.001-08:00

The years 2008 and 2009 definitely had their challenges. Being faced with the potential fatality of our unborn baby in 2008, a once happy pregnancy quickly turned to an anxious and fearful one. The year 2009 was spent in and out of hospitals and doctor offices caring for our little miracle. That wraps up two years of our life with just one of our four children. Add in "life" and you've got crazy!!!

With all of that behind us, we are looking forward to a refreshing 2010! We are even planning to go on our first vacation in 3 years!! In March, we will attempt to drive to Florida and stay with my uncle for a week. We are aware of the challenges that come along with this as well but feel we are up for it. An "escape" from here is needed for our mental health and we are looking forward to watching our kids enjoy some fun on the water! There is no doubt my uncle will bring us great laughs, good food and awesome times! The kids can't wait!!!!!

So far, the new year has begun with great promise! Mia is showing so much growth with her new shunt. She is sitting up on her own now and building strength each day. Within the next couple month, we are going to begin using a gait trainer with her to help her stand and use her legs. We are moving forward with her helmet which she just received yesterday. There is always the "next" thing and it remains my full time job to schedule, attend and care of Mia as well as the other children. We are just praying that we do not have to schedule any surgeries for this year!

So, cheers to a good year ahead and I will leave you with this picture of our new model!

Great to be Home!

2009-12-30T17:00:00.000-08:00

I never thought we would be back today but here we are. You have no idea how happy I am to be home. Mia NEVER sleeps in the hospital (neither do I). On the way home, the little stinker did not even fall asleep in the car! However, back home in her cradle, she is catching some very needed zzzs.

It is safe to say that Mia hates hospitals and is not very kind to medical professionals. She screamed whenever anyone came in the room. She kicked and thrashed during vital checks and any other examination or procedure. It was almost impossible to get any cooperation. I kept having to apologizing for her grumpy disposition and fear of doctors and nurses. In the long run, I am happy to see how feisty she is because I know it will serve her well. Of course, I cannot blame her. How tolerant would anyone be after having 6 surgeries in 13 months plus an enormous amount of doctor visits, CT scans, MRIs, helmet scans, fittings, etc. The list is endless. So, she is allowed to protest!!!

Once again, Mia seems to be bouncing back like a champ and we are praying that this surgery will be the last for a while!!! To say we are pleased with her new neurosurgeon is an understatement! We have gone from one doctor who was not receptive of e-mails to one that has given us her cell number. She says "this is only the beginning" and is optimistic in her approach. Her medical treatment is focused on giving Mia the best quality of life despite her diagnosis. In addition, the new shunt looks a million times better already! We can barely see the tube that runs along her scalp where the old one was collecting fluid. This means we are able to helmet her in order to reshape her head which is extremely flat on one side and comes to a peak in the back. We take her next Thursday to get rescanned for her helmet. We just have a really good feeling about everything and that is refreshing!

Mia's new shunt is different from her old one in that is a "programmable" VP shunt. Her old one was a "fixed" VP shunt. I apologize to those who may not understand all the medical talk but many do understand and may be interested. With this new shunt, the Dr. is able to adjust the pressure as needed so that the CSF fluid will drain at the appropriate rate. It is a very simple magnetic tool that they use to change the pressure so they can accommodate accordingly with growth and head fusion changes. It sounds wonderful but, like all shunt systems, we are aware that there are pros and cons. Since the fixed did not work so well for Mia, maybe this will be better!!! Like I have said, we are extremely optimistic.

Thank you for all you prayers. She would not be our little miracle if it weren't for the power of prayer and God's great blessings.

She's still a trooper!

2009-12-29T04:32:00.000-08:00

Hi Dave here. I'm filling in on the blog for Carleen my amazing wife who is in Syracuse with Mia. Mia had her shunt revision surgery yesterday. She did wonderfully once again. It was a little difficult getting there, but when I left her last night, she was sleeping comfortably.

She was scheduled for surgery at 1pm and we were asked to be at the hospital at 11:30 am. So yesterday morning, she ate breakfast when she woke at 6am and had the last bottle she could eat at 9am. That was it for her until after her surgery. And off we went to Syracuse. Of course, we got a mini snow storm during the night , and we were nervous about the condition of the roads. They turned out to be fine, thankfully.

Once we got to Syracuse, we waited until 2:30pm for Mia to be taken back for surgery. She had gotten very cranky by then since she hadn't eaten food since 6 in the morning. In addition, she was tired and people had been coming in and out to measure her, weigh her, take vital signs, etc. She has gotten to know this routine and was none too happy about it. She knows that these white rooms and these people in the blue clothes means trouble for her. We moved to the waiting room after she was taken back and sat impatiently to hear updates about her. The first one we got was frustrating. It was 4 pm and she had just started surgery! It took them over an hour to put in an I V that worked well. We had been worried that an afternoon surgery might be a problem because of surgeries ahead of hers running late, and it seemed that was the case today. A one o'clock start time turned into four o'clock. Our concern was that the later the start time, the longer a stay in Syracuse for her recovery. Of course, who wouldn' t want to be in balmy Cuse for a Christmas break getaway! Really we just want to get her home with the rest of the family and not have to be away from the other kids.

The Doctor came out after the surgery was complete to let us know everything went well and Mia was awake in recovery. Apparently she was kicking mad at everyone back there and they were happy to see it. We went back to her shortly thereafter, and she was obviously groggy and upset. But also hungry as she immediately drank almost 4 ounces of Pedialite.

Finally we were all taken to her room at about 7:30pm. She is in the new Upstate Golisano's Childrens Hospital and it is wonderful. It is brand new and thoughtfully designed to help sick kids and their families cope a little better with having to be in the hospital in the first place. I won't go into all the details, but it is very well done.

I spoke to Carleen this morning and Mia was doing well. She had as restful a night as possible with nurses coming in every hour to poke at her. She has even started playing peek-a-boo and has given a smile or two. She had some formula last night and more this morning and is tolerating all of it well. I will see her this afternoon and we continue to ask for your prayers for her speedy recovery and quick return home. We miss her and Mommy!! I'll leave you with a photo of her waiting (patiently at this point) for surgery yesterday.

A Beautiful Season

2009-12-26T18:11:00.000-08:00

Many of you may not know this but Christmas is my absolute favorite holiday. I know it is crazy and stressful and it is over too quickly but it will always hold a special place in my heart. There are three reasons for this. The first is, my mother. When I was little, my mother always made Christmas a big deal. No matter how tight money was, she gave to her friends, her family and even the poor. The gifts may not have been elaborate, maybe they were homemade or maybe they were non tangible gifts of love, but she thought of everyone and excluded no one. It is the giving that makes Christmas my favorite holiday! The second is my wonderful husband, my soul-mate. When he proposed, Christmas Eve of 1996, I believed we would have a beautiful life together. On that night, I had no idea just how beautiful it would really be. Every Christmas Eve, I am reminded of how blessed I am to have married the love of my life and created a wonderful family together that brings me more joy than I could ever put into words. The third is the gift God gave us last Christmas, December 12th, when our little angel, Mia, joined the rest of our family. She is a miracle!

This Christmas is no exception. My heart is warmed by the giving of others, the love of family and the miracles that we celebrate everyday! As you can imagine, all of these share even deeper meanings this year.

Giving.....I am overwhelmed! I cannot even begin to share all the wonderful things others, even strangers, have done for us. It is amazing the kindness of others. Families have made us dinners, watched our children, visited us in the hospital, made cards, made blankets, put us on prayer lists, donated to "Mia's Marchers", sent baskets and gave us support when we most needed it. We have had countless doctors, nurses and therapists who have given their time, their compassion and wonderful talents. We cannot say enough about all of our friends at Daystar who take care of the most fragile children and give from the heart everyday. Strangers have donated stuffed animals, toys, blankets and other homemade clothes. My phenomenal friends have given me so much support. Friends came to my house to make Christmas cookies with my kids when I was not able to, lifting our spirits when we were at an emotional low. This is only a very small sampling of the giving we have received this year. The difficult part for me is that I am not able to give back as much as I have received. This Christmas I couldn't even touch the surface of giving back as much as I have received. See, as I give a candle and a card to someone, they have given me so much more. They have given me hope, life, laughter, love and miracles of life.

Family......This year has brought us closer than ever, not only with each other, with our siblings, parents, aunts, uncles and cousins. Our family has supported us every step of the way! Through Mia's journey, our relationships have been brought to a higher level. Our children have bonded in a very special way as well. They have worried when Mia was not well or having another surgery and celebrated her homecomings and every victory. Our family continues to carry us through life with love, guidance and faith.

Mia.....What a trooper!!! The day she was born she had a colostomy put in and an external drain for her hydrocephalus. She remained in the NICU for 18 days. Just three and a half weeks after coming home, January 5th, she had a permanent shunt placed. On March 13th, Mia was back at Strong to have an anal and vaginal plasty which created openings for her where there were none. Then she suffered through daily procedures to get her "coolie" ready for bowel movements. October 2nd, her colostomy was taken down and she was able to pass stool normally! She has had numerous cat scans, blood tests and doctor visits. She was fitted for a helmet but didn't end up taking it home(after hours of scans and fittings). Mia has worked hard with her speech therapist and is beginning to eat table food cut small and drink from a sippy cup. With her special education/vision therapist she has learned to manipulate toys and is beginning to communicate. Mia signs "more" and "eat"! She claps when you say "hurray", waves "hi" and "bye" and gives kisses when you ask her too (my favorite skill of course). It is amazing all that she is understanding. In fact, her cognitive abilities seem to be right on target. Mia has worked the hardest with her wonderful physical therapist. Although she is behind, she is holding her up and can sit up without support for a few minutes. These skills are HUGE gains for her! She has just made remarkable gains in spite of all her obstacles!!!

So, this Christmas has more meaning than any other. This Christmas I truly count my blessings. I do not take one smile, one tear, one friend, one family member, or one act of kindness for granted. Just sitting in the hospital with very sick children and their families has changed me in ways that I cannot describe. With the passing of two beautiful children at Daystar, both under the age of two, I am reminded of how fragile life is. God has shown me miracles and opened my eyes in ways I that never existed before. For so many reasons, the miracles of Christmas ring loudly!

For me, this season is going to end how it began a year ago, in the hospital. Mia will have another shunt placed tomorrow. Please keep her in your prayers. I have heard some say it gets easier. For me, the known is much more scary than the unknown and that makes each surgery harder than the one before. The anticipation of what she has to go through leaves me extremely anxious! Just watching the doctors place the anesthesia mask over her as she is crying out and thrashing makes me want to scream. That is only the beginning. Then there are the hours of waiting, wondering, praying and finally the days of recovery to follow. Mia is so strong. She is a fighter. She has done this before and will do it again! We are praying this will be her last surgery for a while!

I hope your holiday was filled with as much love as ours. Thank you to everyone who has helped us along our journey. We are looking forward to the next year and all the new miracles that await us! God bless!

Ring In the New Year with Surgery #6!!

2009-12-15T20:48:00.000-08:00

Mia will be ringing in the New Year with a brand new shunt. Her current shunt is not working properly and, as we suspected, hasn't been for quite some time. Unfortunately, she is not a candidate for the endoscopy (I explained that procedure in the Nov. 20th post). Her membrane is too thick and I'm not sure why that is. We will talk further to the Dr. when we see her again.

So, December 28th is the big day! The surgery will take place in Syracuse so I will probably be there most of the week. I will try to post when I get home or have Dave post with updates (don't count on that - ha, ha!).

I wish everyone a wonderful holiday. Again, we cannot thank you enough for all you have done throughout this busy year. Your prayers, meals, support and encouragement have been immeasurable blessings that we are extremely grateful for. The generosity, kindness and giving of others does not just come once a year during the holiday season, it is always there!

Happy Birthday!!!!

2009-12-08T13:30:00.000-08:00

The day before Thanksgiving, the girls turned one!!! I can't believe it. In some ways it doesn't seem possible that it's been a year yet, in other ways, it seems like it has been longer with all that has gone on in that time. This may be the shortest post ever :) I just wanted to share the joys of the girls' big day so I will leave you with a few pictures.

Second Opinions....Priceless

2009-11-20T03:43:00.000-08:00

I know many have been anxious to find out about our Syracuse trip. Well, we were very pleased! I was waiting to post until we received some more information from our visit but, as usual, nothing comes easy or fast when your dealing with doctors! Our first visit was with the neurosurgeon. She took one look at Mia and confirmed that the shunt is not working properly. One of her first questions was, "What are they doing about her head size?" Of course, that has been one of our major concerns. Mia's head circumference at birth was 52cm. When they drained the fluid just after birth, it went down to 44cm. When she had her shunt placed in January, her measurement was up to 46cm. Since then, her head circumference has continued to increase. Today she measures 51.2cm, which is almost her birth measurement. The problem is she still cannot hold her head up so she continues to fall further behind physically. She will be turning one next week and is unable to sit up without support. She cannot crawl but does roll around the floor to get where she wants to go. The next question she had was regarding helmeting. She actually wants to replace the shunt and get her helmeted!!!! We were just so relieved to hear that. The last neurosurgeon said "She looks fine from the front and her hair will cover the back," (where her head is flat as a board and comes to a point). This new neurosurgeon is concerned with her overall quality of life and that is so refreshing!

When should the shunt be replaced? The neurosurgeon here wants to wait until Mia is in shunt failure and displays clinical signs that the brain is under pressure. Dave and I have never been comfortable with this plan but have put our trust in the doctor's medical knowledge and experience. This question was one of the most unsettling and is what drove us to get a second opinion. The neurosurgeon in Syracuse said it could take until Mia is 2 or 3 years old before she shows signs of failure. Because her head is so large (and growing) and her bones have not fused (her fontanel is still open and large) there are places for the pressure to go. She won't show clinical signs of failure until the pressure has no where else to go. Her feeling is that the brain is under pressure and that is why we see the fluid built up around the shunt. She wants to replace the shunt quickly so that we can still helmet her. We have lost a lot of time with helmeting. The window for helmeting closes at 18 months and Mia needs to where her helmet for 6 months. You can do the math on that one.

The doctor is looking into a new procedure called endoscopy which creates a new path for the CSF fluid to drain. It has a 50% success rate and Mia has to be a candidate. The next step is to get an MRI to take a closer look at Mia's anatomy. The MRI will determine if endoscopy is even an option for us. It has been two weeks of going back and forth between offices to get the paper work and approvals we need. Some very nice lady from Strong spent 3 hours yesterday talking to the doctors' offices and sorted everything out for me. What she did in 3 hours I could not do in 2 weeks!! Anyway, her MRI is scheduled for this Tuesday. Once that takes place, we will have another appointment to go over her scans, decide what directions we will go and schedule her surgery. The surgery will be at Upstate.

The other appointment was with an orthopedic surgeon. She was excellent as well! However, we are going to remain with Mia's current orthopedic doctor. Mia just needs monitoring ever4-6 months right now. Unless her condition declines rather quickly, any surgery will take place after she is done growing. It is much easier to be monitored locally than having to travel to Syracuse.

It was a very informative and long day! My brother-in-law stayed the entire time, about 4 hours. He will help us look into the endoscopy if Mia is a candidate. We cannot thank him enough for supporting us and helping us through all the medical jargon.

I hope everyone has a blessed Thanksgiving! I know we will and my mom turns 60 on Thanksgiving!!!! It couldn't be a better day. Happy Birthday Mom!! We love you.

Cute Little Pumpkins!

2009-11-05T20:57:00.000-08:00

I hope everyone had a fun Halloween. We sure did! We went to plenty of parties and to the pumpkin patch. We carved pumpkins with friends, made spooky treats and went trick-or-treating. Here are a few pictures. The girls are almost a year. Wow! Where did that time go?

Mia still has a low grade fever and a cough but is doing much better overall. Today we take a little road trip to Syracuse to get second opinions from orthopedics and neurosurgery. My wonderful brother-in-law, who is a doctor, has offered to come with us. It is great to have a second set of ears, especially ones that understands medical jargon more than ours.

Test Results in But Still Not Feeling Well

2009-10-24T19:55:00.000-07:00

Well, yesterday they confirmed that Mia did not have a shunt infection so we were off the her pediatrician's office this morning. She continues to have a low grade fever, which she has had since last Sunday. Today the doctor rechecked her ears and found the left ear to be slightly infected. Hopefully that explains the fever. We also tested her urine for a UTI. The rapid test came back with some bacteria but not enough to warrant a fever. They sent the sample off and we will get those results on Monday. In the meantime, she is taking an antibiotic that will hopefully take care of her ear and possible UTI. We really hope this resolves soon! She was up most of last night and is up again tonight. She is definitely not herself!!!!

First Tap

2009-10-21T17:51:00.000-07:00

Yesterday we met with Mia's neurosurgeon. It was an extremely frustrating appointment. I really can't go into the details because I'm sure it would all sound like gibberish! Plus, I get way too fired up. I left wanting to scream and cry all at the same time. Anyway, she did have her first "tap". Basically, they tested the fluid inside the shunt to make sure her fever is not a result of a shunt infection. They placed a needle through her scalp and passed it into a reservoir in the shunt. It was not pleasant but it was done right in the office and was over fairly quickly. We will get the results back Friday. On a positive note, she did seem a little more like herself today. Her fever has gone down so hopefully this was all just a virus. I'll post when I get the results.

The Phone Call

2009-10-19T16:42:00.000-07:00

Sorry it has been a while since my last post but you will understand after you read the drama! Yesterday, my two wonderful sister-in-laws and I headed out for a relaxing, girlie afternoon - Yeah!!!!- each of us leaving our husbands to tend to the children....even better:) We all took one car and headed to a fashion show to benefit Daystar, where Mia attends. It is the most wonderful place in the world but that is a whole other post! Anyway, the first part of the luncheon began with a silent auction. We bid on items and then went in for our lunch and fashion show. We made it through the salad and about 4 models. Then, I got "the phone call". Dave was hysterical. He told me Mia had been crying for two hours and then vomited (one of the major signs of shunt failure) and he was taking her to emergency so I should meet him there. Because we took one car, we all had to leave! I called him back and he said to hold off that she looked okay now. At that point we had already left and were on our way home. When we walked into the house, Mia was happy as a clam! Obviously I was relieved that she was okay but disappointed that our perfect and very rare afternoon was a bust. Since I needed a drink, my sister-in-laws and I went out to lunch (very close to home and with separate cars - I wasn't taking any chances) where I had a very tall glass of SamAdams! It's never too late to become an alcoholic is it?? Just kidding, relax mom!!!!

Now there was great reason for Dave to panic because this has been brewing all week. I have spent every night on the couch with Mia since last Monday. She didn't sleep much in the hospital so at first I thought maybe she was having a hard time getting back into the routine. Then, it continued and I thought maybe it was her extremely raw bottom (it was like a second degree burn that was bleeding). Maybe she had a little virus seen she seemed a little congested. Maybe it's her shunt. Maybe she is getting an infection (our biggest fear). Fortunately, her incision looks great so we ruled that one out. Needless to say, there are too many maybes and two very worried parents.

Last night she started with a fever and she continued to be out of sorts and uncomfortable. Today I was suppose to chaperon a field trip for Mia's brother but instead Dave and I spent the afternoon at the doctor's office with both babies. Gabriella has an ear infection and a sinus infection. As far as Mia goes, we still are not sure what is going on. There are still a lot of maybes. We have an appointment with her neurosurgeon tomorrow so hopefully we will have more answers. I will keep everyone posted.

Awestruck!

2009-10-07T05:57:00.000-07:00

Mia came home a day earlier than expected!!! When I look back at this experience, I am completely awestruck. Mia's recovery has been unbelievably smooth and speedy. When you look at her, you would NEVER know she just had surgery. She is smiley, playful and just beautiful.

Upon returning home from Mia's fifth surgery, I couldn't help but think how far we have come in her ten short months. It truly is amazing!!!! Mia's outstanding pediatric surgeon has done all three of her colostomy surgeries. There are no words to express our gratitude. His advice and fortitude to move forward with her reconstruction has obviously changed all of our lives and clearly Mia's future. When Mia was three months old, without hesitation, he said, "We are going to have her poopin' out of her bottom by the time she is ten months!" At 10 months and 10 days, Mia was poopin' out of her new bottom. There are no words when someone transforms your child's future for the better and uses his/her God given talents to create what you never thought could be!

We've Got Poop!!!!!

2009-10-05T09:42:00.000-07:00

Have you ever seen an angel poop? Well, at 9:10am this morning our angel pooped out of her new coolie!!! It is the most awesome feeling. I don't think I've ever screamed "poop" so loud. A little obsessed? Maybe. You would be too. Mia continues to just fight every step of the way. She is doing so well. We are finally able to feed her:) It is the first time she has eaten since Thursday morning!!!! We couldn't be happier. If all goes well, we should be home in a couple days. She looks great. She is smiling and almost back to herself. Thank you for all your comments and e-mails. I apologize for not responding but I have only been home twice to shower and update the blog. I have gotten all your good wishes and will try to respond to all of you when I get back home, but I cannot promise that either. Thank you again for all your prayers!

Surgery Went Well

2009-10-02T12:43:00.000-07:00

As I said, we were admitted yesterday afternoon. Mia pretty much cried from the time they put a tube and IV in until they took her this morning for surgery. We were up ALL night. We just walked the floors of the hospital so the little boy next to us could sleep. I went in the operating room with her until they put her under. She was very upset but then fell peacefully asleep. The doctor said everything went well. I just left the hospital around 1:30 and she was still in and out of sleep and very uncomfortable. I am on the run to pick up the other kids and bring them up to see Mia. I just wanted to let everyone know that surgery went well. We will keep you posted. Thanks you for your thoughts and prayers.

God is funny!!!!

2009-10-02T12:23:00.000-07:00

Well, let me tell you that yesterday did go off but not without a hitch!! Mia was admitted to Strong yesterday for her pre-op procedures. They gave me a window between 12-2, no later than 2, and they would call me with a specific time. As fate would have it, my son was up all night complaining his ear hurt. I sent him to school and told him to ask the nurse to look at it. If she felt I needed to bring him in, I would but if she didn't think it was infected I could use that time to get everything ready for the hospital and get everything else taken care of before I left. Of course, the nurse calls.....he has an ear infection. I call the doctor's office, the only time they can see him is 1:30!!!! Funny, right? So now I have to tell the hospital the situation and go there as soon as I am done with his appointment. So, I pack the car for the hospital, load the girls and go to pick up the older two from school. I take all four kids to the office with me. In the meantime, I have to rearrange all the sitting situations. I am frantically calling my husband, my mother, my in-laws, etc. My mother meets me in the parking lot and give her the older two. Then my father-in-law meets me in the parking lot to take the baby. Finally, I am off to meet Dave at the hospital! It really was chaotic and comical all at the same time!!!!

Time Standing Still

2009-09-29T17:24:00.000-07:00

Usually, the days move too fast and I am grasping at every hour to linger longer. I have told a few people this past week that it just feels like these last two weeks have been an eternity! The anticipation and anxiety of Mia's next surgery has made time seem like it is standing still. We are very excited at the idea of no more bag!!!!! But we know that it comes with a great cost. As difficult as this surgery and recovery will be, we feel it will benefit her greatly. Just to be able to sleep comfortably on her tummy without that appliance against her and without mommy and daddy having to empty her gas in the middle of the night so she can fall back asleep. We are also hoping it will relieve some of the pressure build up that effects her shunt. She will be able to bath and swim freely, the list goes on. So many positives! This is what I am trying to focus on but it is so hard, especially since our last hospital stay was a tough one. We all know Mia is a fighter, I just wish she didn't always have to fight so hard....that we could be the fighters instead and take away all her pain. Of course, we are no different than any other parent!!!! You all can relate. Please keep her in your prayer! We will update Mia's blog so you know how she is doing.

No Helmet!

2009-09-27T19:31:00.000-07:00

Well, the week before last was very disappointing! Mia was suppose to get a helmet to reshape the significant flat spot on the back right side of her head. The helmet was ordered and in. We were getting her fitted when they decided not to send us home with it. Because her shunt continues to collect fluid along the track, they feel it is not stable enough for a helmet. It is a risk they are not willing to take. This means her head will stay the way it is. We are left with many unanswered questions, one of which we have been asking ourselves for months, "Is her shunt working?". This set back has pushed Dave and I to reevaluate and seek out a second neurosurgerical opinion. In November, we will be heading to Syracuse to visit a new orthopedic surgeon as well as a neurosurgeon. At this point, a second opinion will not change the outcome of her helmeting options. Instead, we want to hear if another doctor would wait to fix Mia's shunt until she is in shunt failure or if they would recommend fixing it before, when she is not in a catastrophic failure. Of course Dave and I would rather have it done when her body is not under stress and is shutting down, but we are not medical experts. Until then, we wait and watch her fluid fluctuate hourly and have every medical professional ask us, "Has her doctor seen this? I've never seen a shunt do this before."

How is Mia Doing?

2009-09-11T06:22:00.001-07:00

The question we get asked most often is, "How is Mia doing?" I will try to answer that question as best I can. Mia is now 9 months old. She weighs a little over 17lbs. and loves to eat!!! She just started eating some table food but still chokes easily due to the weight of her head. She is a champ at eating baby food!!! She is displaying age appropriate cognitive abilities. She babbles, says Dada, tracks objects, tries to imitate and is very social. Mia is happy most of the time. We still have doubts about whether or not her shunt is operating correctly. Fluid drains around the shunt and we are not sure how much fluid is actually going through the shunt. We have addressed this numerous times with her neurosurgeon. Basically, his response is we do nothing until there are very apparent signs that her shunt is failing, i.e. vomiting, lethargy, fever, seizures. We have had two follow up CT scans, one in February and one in August. In six months, her ventricles (the fluid producing glands under the brain) have not shrunk and the fluid vs. brain matter appears the same. This is neither good nor bad. Basically, her fluid level and brain tissue have not changed. What you hope to see is a slow decrease in fluid, smaller ventricles and more brain tissue. This has not happened. The good news is nothing looks worse. Our concern is that her head circumference has continued to increase. At 50.5cm, she is almost up to her birth measurement which was 52cm. However, they say she is still following the growth curve, even though her head measures more than Samatha's. This concerns us because physically, she is falling way behind. Of course we knew that was going to happen but with her head increasing, it will be a while before she can even hold her head up. Right now she can roll and make her way around the room that way. She cannot sit up without support and cannot crawl because she cannot lift her head up. We would like to see it at least stay the same and then her body would have a chance to catch up to her head. Our other concern is the shape of her head which also limits her physically. She has a severe flat spot that is making it difficult for her to turn her head and shift the weight of her head to the other side. So, she has been fitted for a helmet and we are praying that this will correct her bone structure. She will have to wear the helmet 23 hours a day for 26 weeks! There is some concern as to whether or not it will break down the skin around the shunt which could lead to infection. If that happens then we have to stop the treatment. She gets physically therapy 2x/week, special ed./vision therapy 2x/month and speech therapy 1x/month(to help with feeding). We average anywhere from 5-10 appointments a weeks for her, that includes her in-home therapies and visits to her many doctors. We still have to address some of her orthopedic needs but we are looking to get a second opinion on that and may be traveling to Syracuse or Buffalo. Right now her left leg is longer than her right and we already know that she has an abnormal vertebrae with hemi-vertebrae and fused vertebrae. She also has an extra rib and some fused ribs. Overall, she is doing well. She is healthy and takes no medications!!!! She is so strong and just tries so hard to move her body! We are just trying to stay on top of everything. The older kids are excellent with her and go to many appointments with us. They are so patient and understanding!!! Her twin just wants all the attention and attaches herself to me!!!! Dave and I are hanging in there and counting each milestone as a miracle.

Waiting for the Bus

2009-09-09T19:26:00.000-07:00

Colostomy take-down

2009-09-03T20:50:00.000-07:00

We are very nervous and excited about Mia's next surgery. On October 2nd, she will have her colostomy taken down!!!!! The thought of no more bag seems unreal and knowing that she will have no memory of the surgery is joyous. However, we have heard that this a very difficult surgery and recovery. We are so nervous for her. The surgery will take about 3 hours and she will have to stay in the hospital for 5 to 7 days after the surgery. We know she is a trooper! The biggest worry is the risk of infection, especially with her shunt. Mia has so many people praying for her and that will pull her through! We will keep everyone posted!

Happy Summer Days!

2009-07-30T04:56:00.000-07:00

This summer has been extremely busy but great! The girls went on all sorts of field trips with the older two: the zoo, swimming, Seabreeze, the beach, Build-A-Bear, the camp, birthday parties, picnics, etc. I even went on a road trip, by myself, with all four kids to see Aunt Leigh and Uncle Jim (see picture above)! The list goes on and on. July 2nd Mia signed "more". We couldn't believe it!! Then, July 15 she said "dada", even before Gabriella! So far she is exceeding all expectation! She also started grabbing her toes and sucking on them. She has learned how to play Peek-A-Boo. It has been amazing!

"Coolie" Repair

2009-03-13T19:41:00.000-07:00

Dr. Pegoli did a rectal and vaginal plasty today. He had to create an anus and vaginal opening. Neither "holes" were present at birth. All of Mia's parts were there internally, they just never came to the surface. This is part one of two surgeries to reverse her colostomy. The second part should be done somewhere between 10 and 12 months. Mia did not recover as well from this surgery as she did from her shunt surgery.

Shunt Surgery

2009-01-05T19:23:00.000-08:00

Mia had a permanent VP shunt placed today. She was in surgery for 5 hours. It was the LONGEST five hours of our lives. She did well and recovered from the anesthesia quickly. They say she should go home Wednesday. Now we pray that there are no signs of infection.

An Early Christmas

2008-12-12T19:30:00.000-08:00

Last night we got the best news! We were able to bring Mia home today!!! For us, the miracle of Christmas has come early! We are blessed to have Mia home! Gabriella and Mia are reunited for the first time since birth. We are very nervous about her medical care but we can do this!

Bitter-Sweet

2008-11-29T19:25:00.000-08:00

Today was a big day! It was the first day I was able to hold Mia. Only one of us was able to hold her so Dave told me to go ahead. I just cried and cried! She has made it!!! I just held her in my arms and told her how sorry I was for all her pain. All she has endured already. I just want to fix everything for her. I would tell her that everything is going to be okay but I am still so scared myself! Today we were able to take Mia's twin sister Gabriella home. It is just heart wrenching to leave her behind. We are so grateful that Gabriella is healthy and home with us but it saddened us to drive home with an empty car seat and welcome home only one of our precious little girls. We know she is in good hands but it is hard to see her lying there, hooked up to all the i.v.s not knowing when she will be home with us. No matter how prepared we were for this day, we were never fully prepared!