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1.29.2012

Dec 2,2011: Seussical the Musical…from hell.


I don’t know if Jayden gets it from strong dislike of anything musical/animated, or what exactly I was thinking, but we signed up to go with his class to Seussical the Musical. Jayden hates Disney, or any dress up characters, so I don’t exactly know how we got there, but I thought I would at least try. You never know, right? The first note came out of the man dressed like the cat in the hat….and Jayden began to wail in terror. We tried for a few minutes to calm him, and with no luck, ended up leaving.

Good thing we didn’t take the bus!

U of Minn: Nov 28-Dec1



Round 2. Minnesota was a bit easier the second time around-now knowing what to expect. The kids did a great job and one of the testing days was even cut a bit short so that made it even easier. Unfortunately there isn’t much to actually do in a hotel with no pool, but we are just so thankful SOMEONE is doing SOMETHING to explore Sanfilippo and we are glad to be a part.

I will say, having both of your children under anesthesia is still hard. I try to do stuff during the 4 hours to keep my mind off of it, like blogging. This time, we met a really nice lady who works in the Minnesota education system specifically with children with special needs. She even gave us her home phone in case we ever got in a bind while up there.

Another nice feature is the status board. You can watch where your loved one is (waiting, OR, recovery) so you feel a bit more in the loop.

Dr.’s say that they see some regression with Jayden from the last time they saw him, 18 to 14 months. They said he is in the second stage of Sanfilippo. Brooklyn is entering the first stages, developmentally testing at 24 months. It never gets easy to hear. In fact, I feel like, we continue to adjust to Sanfilippo, and it continues to strip us of our children…day by day…little by little…that we don’t acknowledge what is happening until someone acknowledges it for us. I still am not a huge believer in measuring someone with a test, although I see the truth and benefit in testing….I just think other things matter more. 18 or 14 months doesn’t change how we love him. We just do. So-in the middle of “adjusting” or it this “new normal”…it still requires a constant surrender.

We will be returning for our annual in the Spring/Summer…pending the arrival of baby 3. And then, I believe one year after. Again, they are a part of a natural history study of Sanfilippo, basically a control group for the kiddos getting treatment in the UK, with hopes that there will be forward progress in bringing treatment here soon.

Thanksgiving: Nov 24


Thanksgiving is always such a nice time with family. Even though I feel sick as a dog, eating helps. It is just nice to reflect on what I am thankful for, and family is sure one of them!

Thankk you, Aunt Jill, for hosting!

Jayden's sleep safe bed is HERE!: Nov 23



FINALLY! Jayden received his sleep safe bed! Set up was easy and the bed has served us well in the last couple days! A journey to say the least that was worth it! I recommend these beds to any Sanfilippo parent and am going to start trying to get one for Brooklyn soon.

Stefanie's Birthday: Nov 19

Had a great birthday! 31 isn’t that bad, yet! HA! Jut and the kids made me a huge banner with a gift card to Old Navy! My mom took me shopping and to a late lunch while Joan watched the kiddos on Friday. Saturday I had a great time at Breakfast and Marshall’s with my dear friend Kathrina, then a night on the town in Milwaukee, dinner at the Ale House and Comedy Sportz with friends! What a wonderful celebration!

Sunday at church was a day to give thanks. Justin and I have much to be thankful for, so we shared and publicly thanked everyone who had helped us with the house, or supported our family in any way. We have been so blessed by our church family!