Two (or Three) Months of Updates - August

Trying to get caught up - in between the insanity of school getting out, being gone for different camps and conferences, getting sisters where they need to be and the few appointments we've had, I looked up and it's halfway through July!!!

So here's are all of the updates from recent appointments, accomplishments, adventures, etc:

Trach update: things have been going great with your stoma. No issues, no problems - hasn't healed up much more so we're still scheduled to go in to have it surgically closed on August 1. They said to plan for at least two nights in the hospital for observation so that will be fun...

Feeding Update: You have been consistently eating more and more (like half a teaspoon more...which in "normal" terms is not a lot, but is still huge for you!) and keep trying new things. You let us know when you don't like the new things fairly quickly... usually by handing them back to us. You had  GI appointment June 20 and he said everything looks great. They were thrilled with your weight gain (up to 22.2 pounds from 21.4 at your last weight check!) and glad to hear the blended diet was going so well. He mentioned that at the next appointment (in January) he wants to re-run the allergy testing and see if you have outgrown any of the allergies / intolerances that you previously tested for. Sometimes, after your body adjusts to real food after being on formula for so long your tolerances are much better because your body processes things differently. Crossing my fingers on the dairy issue because you STILL ask for cheese anytime you see it!!!

Developmental: We also had a developmental check up on June 22 and you were your usually cheerful, happy, cooperative self....HA! The appointment went about as well as any of your other developmental appointments: he asked you questions, you refused to answer, gave him looks like "why don't you know this?" and refused to show off most of your fun tricks. He made the comment that I should prepare myself to get a lot of calls from the principal when you start school because you will likely be bored the first year at school because you're at a 3.5 year old cognitive level.

We went back again on Monday to test out the power chair and they said it was like night and day difference in your driving! We got all of the paperwork done and submitted so now we just have to wait. You had a lot of fun sitting in the different chairs while we were there and talking up a storm while we waited. We had taken your old medical stroller to donate back so they could use it to loan out while families are waiting for their stroller and you insisted on sitting in it. It is CRAZY how much bigger you are! Your shoulders were at the top of the headrest - when we were using it, your head only went about halfway up the rest! All in all, it was a great appointment; now we just get to play the waiting game on the approval process.

We go to Shriner tomorrow so I'll post an update about that at the same time I update about the trach closure surgery.

I've had a couple of people ask about the presentation that I gave at EYL Camp this year for AMC Awareness Day - I'm working on a post about EYL Camp and in turning the presentation into a video so I will hopefully get that done in the next week or so (or while I'm sitting in the hospital waiting room...).

I also had some folks ask me how we do the blended stuff when traveling so I plan on doing a post about your blends and our process in general fairly soon too.

In the meantime, here are a couple fun things you've been working on:

You and Nanny spent the day learning Pat-A-Cake:

You love singing - this is kind of hard to catch, but it's you singing the B-I-B-L-E all by yourself. You repeat the second line a bit before you move on, but it's still awesome to hear you singing!

And just for fun:

Your first full pony tail! It only lasted about an hour...

Took the front off your crib so you're now in your Big Girl Bed!

You've been begging to go outside but it's SO hot - this was at 8:00 last night,
 and we were only out there for about 15 minutes!

AMCSI Conference - July 9

I know it has been too long since I posted an update, and there is a ton that I need to update on, but I wanted to take a moment to write a post about the AMCSI Conference that we attended over the last few days.

Wow.

That's all I have to say. From the moment we walked in, I was encouraged. Seeing people of all ages and from all walks of life, with and without AMC, gathered together in one place was... Just so encouraging. We got there right in time to walk into the newcomers reception (literally, out of the car to the meeting room) and you immediately began asking for your scooter because after being in the car for so long you wanted to move. Then people started introducing themselves and you had a tons of claps and a loud YAYYYYY for each one of them.

Within 15 minutes, we had been introduced to 6 other families from Texas - including one who lives literally 10 miles away from is. In New Braunfels. Down our street. RIGHT THERE. Apparently, there used to be quite a large grouping of Texas families who met up fairly regularly around the state but that has fallen off some. There are a handful of families in the San Antonio area who are wanting to get things going again so YAY! 

The second day, we heard from an amazing young woman from Peru who has put together a series of videos and who speaks to AMCers about finding their own way of doing things "My Way". We also got to hear from a doctor who is HUGE on going as far and as long as possible with bracing on feet before opting for surgery, 1) because there is a higher chance of relapsing issues the younger you do surgery and 2) it causes more chronic pain issues later in life the more surgeries you have. Interesting tidbit: the foot starts developing in the first 4 weeks of being pregnant and is completely developed by 8 weeks. By the time most women find out they are pregnant, the foot is as developed as it is going to get until birth. Amazing.

I got to go to a volunteer meeting and will hopefully get plugged in to the conference planning committee and helping the Texas group get a few meet-ups off the ground! After that I went to a session that gave advice on three or four practical, realistic stress relief techniques while Daddy and Grandpa went to a session about DIY Equipment for therapy and exercising. 

There were special sessions for Moms, Dads and Grandparents that were lead as peer to peer discussion groups and I was able to connect with some more AMAZING moms about what's working, what's not, ideas to try, and just talk about our kids (because what mom doesn't like to do that?!?).

By far, the best session was on advocating for your child - SO much information, so many ideas and so many things to consider!!!

I think the biggest benefit to the conference was seeing all of the other families  and AMCers - it was a great reminder of how far we have come, how blessed we are with your doctors/therapists/nurses and all of the support we have at home. It will continue to be something we try to attend as often as we can just for the support and encouragement.

Thank you, thank you, thank you to everyone involved with AMCSI and to the conference planning team for all your hard work!

(Lexi and I with the Board of Directors for AMCSI)