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Thursday, May 22, 2014

Round 3.... The BIG News From Our Third Opinion

Well, today went a totally different way than I expected, but in a good way! 

Dr. Shafron remembered us from Madi's previous surgeries that he did (he did a few of her shunt surgeries when he and Dr. Moss were both still out of Phoenix Children's Hospital and Dr. Moss, our regular neurosurgeon, was gone.  He didn't actually recognize Madi, of course, because she was only about a month old when he operated on her, but he recognized her name.  He said he doesn't always recognize or remember names, but that for some reason ours stood out to him.

Dr. Shafron reviewed all of Madi's medical x-rays and MRIs over the last few years.  He said that when he compared the MRI scan from when she was two to the MRI we just did a few months ago, her tethering was actually stable and he didn't see any significant changes.  He also said her spine does not have the classic look of one with significant scoliosis.  He could see both side of the spine, and the nerves were straight and not twisted around the spine at all.  He said her ventricle size had very slightly increased since the last scan, but that it is very minor and he isn't too concerned since she is showing no signs of shunt malfunction.

I asked his take on surgery, as well as the approach he would recommend.  He feels that there is no rush to do surgery, and in fact, he's not even sure she warrants a surgery.  He said he feels like we need to get further x-rays to study her scoliosis.  He said that we really need to figure out what degree she is, try to figure out if it's stable or if it is worsening, and then see if the orthopedic surgeon feels that a de-tethering surgery would really help her.  He said they usually watch the spine carefully by using the same test and watch for change.  He said since we don't have a baseline, we don't really even know if there is a change.  He also said there are multiple things, like her syrinx or her Chiari II malformation, that could be causing the scoliosis as well.  He basically said that he thinks the orthopedic surgeon would be the one to determine if she needs surgery or not, because he's not convinced she does.  He also does not recommend an aggressive surgery when the time comes to de-tether her.  He said that he only uses an aggressive surgery with a child that has had multiple de-tethering surgeries before and that has no movement at all in the legs.  Because it would be Madi's first, and because she does have some movement and feeling in the legs and toes that you wouldn't expect for her level, he said that he would not want to do anything aggressive or permanent.  That was music to my ears!!

Right now we have decided to put off Madi's surgery, get back in with Dr. Goggins, our orthopedic surgeon, and get some better, more accurate pictures of her spine, that include standing in her HKFOs with hips level, laying, and side views.  Next we will determine where her spine really is at.  At that point we will decide if he thinks she warrants surgery, or if watching her and continuing to carefully monitor her would be a better approach.  Our appointment with Dr. Goggins is June 12th, so I hope to have so more information then. 

Thanks so much for praying for our family.  Please continue to pray for answers as we decide if she needs surgery or not, and also pray for clear x-ray photos so that we can get an accurate view of her spine and her scoliosis.  I am so thankful, though, to have a good plan of action and to be able to have Dr. Shafron do the surgery so that we can have a conservative surgery, and still be in Phoenix.  I am so thankful for the answers we got today!!

Tuesday, May 20, 2014

Why I Loved Madi's Preschool

Today I was looking through the album Madi's preschool teacher posted with pictures she took of the kiddos throughout the year.  The one thing that really stuck out to me was how much Madi was included.  Too often you hear parents say they have to fight for accessibility and inclusion, and it really shouldn't be like that.  Stepping Stones is a private preschool that did not have to make any modifications for Madi, but they were excited to have her come to school there, and took it upon themselves to make it a safe and comfortable place for her.  They lowered sinks, poured concrete, and made the play areas accessible.  I think that speaks volumes for how much they care about their children!!  There are also things you can't see in the pictures, like the fact that they would change Madi's pull up and/or clothes for her if she had an accident or her vesicostomy leaked too much.  I had told them I was happy to come change her, because I know it's probably hard to stop teaching to help her, but they never called me once and made sure she had the modifications she needed at preschool.  Here are a few pictures from her past preschool year; I think you will see why I love her preschool so much.

Notice that cupcake?  It's a gluten, dairy, egg-free homemade cupcake they let me bring in for the class, so they could all enjoy a treat Madi could have too.

Madi was always put down to explore when she wanted.  They made sure she got where she wanted to go and didn't let her wheelchair keep her out of places.

Notice the chair behind Madi?  Since she can reach the sand and water table easier from a chair, they helped her transfer.  They always did what made her comfortable.

Who doesn't love going down the slide with friends???  Madi's teacher would help her climb up the ramp, giving her just a small amount of support, so that she could do it "all by herself" like all the other kiddos...

Down in the snow!

I love that her teacher wasn't afraid to pick her up and put her right in the middle of what was going on.

Notice she's sitting with the other kiddos... not on the sidelines!

It's hard to tell from this picture, but this is in a police truck they use during shoot outs and the such.  It's high off the ground and had narrow, tiny stairs.  They made sure Madi was brought up, though, so she could participate.

Driving a fire truck....  not stuck watching the other kids doing it

I am sad that this was Madi's last year in preschool, but I am so thankful she got such an amazing experience and was so well taken care of! 

Sunday, May 18, 2014

Photos From Our Boston Trip

We had a lot of fun on our Boston trip.  Boston is not very wheelchair accessible, sadly, but the city is beautiful and, as always, we made it work without missing out.  It sure helps to be creative!  The people in Boston were also very friendly and helpful and helped us whenever they could.  We are also SO thankful for the opinion we got about Madi's surgery and are also looking forward to our upcoming third opinion with Dr. Shafron on Thursday. Please continue to pray for clarity for us!!  Without further-ado, here are some photos from our trip!

Off we go!

Boston Aquarium Fun

Clinic time! Yeah for second opinions!

Bus Tour!

Out on the Duck boat... the boats that run on land or water!

A harbor boat tour....

Some pretty pictures from down town...

A fun 3D movie.... Madagascar Lemurs, narrated by Morgan Freeman

A trip to the science museum....