Wednesday, December 30, 2009

Great to be Home!

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.

Tuesday, December 29, 2009

She's still a trooper!

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.






Saturday, December 26, 2009

A Beautiful Season

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!

Tuesday, December 15, 2009

Ring In the New Year with Surgery #6!!

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!

Tuesday, December 8, 2009

Happy Birthday!!!!

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.




































































Friday, November 20, 2009

Second Opinions....Priceless

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.

Thursday, November 5, 2009

Cute Little Pumpkins!

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.

Saturday, October 24, 2009

Test Results in But Still Not Feeling Well

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!!!!

Wednesday, October 21, 2009

First Tap

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.

Monday, October 19, 2009

The Phone Call

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.

Wednesday, October 7, 2009

Awestruck!

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!

Monday, October 5, 2009

We've Got Poop!!!!!




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!

Friday, October 2, 2009

Surgery Went Well

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!!!!

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!!!!

Tuesday, September 29, 2009

Time Standing Still

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.

Sunday, September 27, 2009

No Helmet!

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."

Friday, September 11, 2009

How is Mia Doing?

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.

Thursday, September 3, 2009

Colostomy take-down

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!

Thursday, July 30, 2009

Happy Summer Days!


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!

Friday, March 13, 2009

"Coolie" Repair

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.

Monday, January 5, 2009

Shunt Surgery

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.