Sunday, December 26, 2010

Celebrating Miracles!

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!

Wednesday, December 1, 2010

A Thanksgiving Celebration For Sure!!!

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!

Friday, November 19, 2010

Preschool Update

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!

Thursday, October 28, 2010

Reality Check

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 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.

Tuesday, October 5, 2010

What's Next?

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!

Sunday, August 22, 2010

Summer in Review

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.

Thursday, July 1, 2010

Hamster Wheel

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

Thursday, June 3, 2010

Lovin' Life

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!!!

Wednesday, April 28, 2010

The Good , the Bad and the Ugly

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!!