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!