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.