3 years ago today.....

.... I was handed the most beautiful child. At 21 months old Mia-Faith was the oldest gal in the group from Fuzhou. She is a delight and we absolutely adore her. She has everyone of us wrapped around her finger.

Just pictures

Mr Wiggles

We were unable to complete Keaton's MRI. Keaton was too wiggly. The first MRI Keaton had when he was diagnosed was limited (part of his spine) and without contrast- he did fine but this MRI is a lot longer (top of the spine to the bottom) and also needs to be repeated with dye. The plan is to reschedule the MRI with sedation ASAP. He was a trooper and tried so hard but it was just one of those days the more he tried to "freeze" the more antsy and anxious he got. Just a small bump in the road.


I was inspired by a fellow blogger to try our own version of The Melting Pot. The kids loved it. It was yummy !

Day at Lake Michigan

Today we spent Keaton's 4 hours out of the brace at Lake Michigan. The scenery was beautiful ! We all got a little pink even with sunscreen. The water was freezing cold but that didn't stop anyone from going in the water.

Dinner at Waynes drive in....

Soccer Camp

Keaton's last day of Soccer Camp is tomorrow. He has really enjoyed it. The coaches are great.

Keaton is up to 16 hours with his Boston Brace. I keep tightening it a little more every day. He got really itchy from the special thermal Boston t-shirts that we were given with the brace... so I went online and ordered 3 packs of Hanes tag-less and seam-less shirts. Keaton said it feels much better. We got the call that our consultation at Shriner's Hospital is on Tuesday, July 28th. We are seeing Dr Betz. We can't wait. We also completed Keaton's 504 plan for the fall school year.

Post- updated !

We just got home from our marathon appointments at Children's Hospital. Keaton was a trooper ! He has been very quiet just soaking it all in. Our orthotist was very patient and kind. With the brace Keaton's measurements drop to 17/11. Keaton says the brace is very tight and he can't breathe. It will take him a few weeks to adjust to it. He will wear it for 2 hours, increasing 2 hours every day up to 20 hours. We also have to progressively increase how tight the brace is strapped.

We also met with the hospital social worker who helped us with our 504 planning form for the 2009-2010 school year. Next stop Neurosurgery on Friday - then it will be off to Shriners for another opinion ....

Friday- we had Keaton's neurosurgery appointment. The MD and PA were great. Keaton had tears the minute we arrived at Children's Hospital. He is overwhelmed with all this. The MD and PA were able to interact with him, get him involved and complete the neuro exam. We were shown the area of syrinx in the spinal column. The plan is to do a complete MRI with contrast to see if there is any other underlying issue such as a tumor, chiari or tethered cord. If none of these are found they want to take a wait and see approach~ monitoring the syrinx.

Where we are at....

Time is flying....

Harrison- had his Track banquet. He received a "Coaches award" for the distance team. There were 63 kids out for track and he got 1of 3 awards given.

Madeline- nothing new. She continues to pal around with her friend Lexie.

Hayden - He is bummed that the library has started summer hours. His rationale is that when school is out kids need to go to the library more often. He thinks they should expand the hours.

Keaton-gets his brace tomorrow. He sees the neurosurgeon on Friday. I have also made contact with Shriners in Philidelphia. I spoke with a PA who was wonderful. She was very reassuring. I have learned alot about JS over the past week. This will be a challenging week. Keaton is scared. I hope things go well.

These are pictures from Keaton's appointment the day he was diagnosed. His measurements are 15/36/25. JS is all about the measurements.

Eli-he is doing great. He continues to amaze us with his transition. We can see his genuine love for us. I think that some of his initial behaviors were more superficial but now he is truly affectionate. He is a really funny kid at home. He is still very loud and a bundle of energy ! I did mail off a few picture to his Chinese foster family. We will see if they respond.

MiaFaith -Miss Mia remains the princess. We just completed her IEP for next year. She has one more year of Early Childhood. Speech will focus on articulation and maintaining conversation.

All the kids are done with school in two days . I can not wait - the idea of a break from packing backpacks, making lunches and laying out clothes sounds good. Harrison has elected to take summer school to lessen his sophmore load this fall. Both Mia and Eli have been placed in summer school due to speech and language. I had signed Keaton up for a soccer camp prior to the JS diagnosis. Fortunately it is the week right after getting his brace so he will have the "time without the brace" to participate in the camp.

I can not express how touched I am by everyones support during this time. Our family really appreciates it - we have been told by other families that we will have a new normal- I can't wait to settle into what is new.