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.