Happy St. Patrick's Day!

I love dressing Addy, she never complains about what I pick out (yet!). I always get such deals too, I got this shirt last year on clearance for $0.99, it's a 3T so she can wear it next year too!

Imaging

Can you tell Addy's favorite thing about Children's (besides STILL having her finger up her nose!)? She's signing what she's watching, she loves it!

Everything is so PC now, I had to laugh. Radiology is no longer radiology, apparently now it's the Imaging Center! Too funny! Addy and I went up to St. Louis last night so we didn't have to get up well before dawn this am to go to St. Louis for her appointment at Children's.

She had to have a Barium Enema, fun stuff let me tell ya! Addy did absolutely fantastic, she did cry but didn't put up too much of a fight, it only took three of us to hold her! I don't know if anything was found out or not, I guess I'll hear from GI after they get the results. Not sure what they were looking for, or not looking for, hopefully someone does! I took a snapshot of the computer screen right before we left, I have no idea what I'm looking at! I see intestines, beyond that I have no clue.

We're happy to be home, Addy took a nice long nap in the car. Now she's hanging out on the couch in front of the open window (it's a gorgeous 70 degrees today, it was snowing on Monday) watching Jake play basketball and cracking up. She's still having projectile expulsion of barium, good thing we traveled home in a pull up, diaper lined with a washcloth, pants and a towel under our bum in the carseat!
So now I have a couple of days of Spring Break with the boys until Addy and I fly the coop Friday night for the big weekend with our girls Zoey and Ella!!!!!

(Addy is watching the gorgeous fish in the tank in "imaging")

Princess

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Long Week

Last Monday afternoon Addy, her nurse Kim and I headed to Springfield to get Addy a new MicKey button. She only gets one per year and let me tell you, it was beyond necessary! It actually broke while we were waiting! While we were there I noticed that my throat was a little scratchy. Nothing major, just starting to hurt. We finally got Addy's button in and started to head home, I got a bottle of water for the way home, thought it would help. We got home around 5pm. By the time Scott got home at 6:30, I had a fever and was chilling really bad. He instantly sent me to bed and took over kid duty. By 10 pm I was in tears my throat hurt so badly, it was a really long night. At one point my temp was 104. Yuck! I got into the doc Tuesday morning and sure enough I had a nasty case of strep. I'd never had strep before and let me tell you, I don't ever want it again!! So I was once again told I need my tonsils out. I'm really dreading the thought of that, I hear it's a nightmare for an adult to have that done. I missed work until Thursday but there was no way I could have gone, it was awful. I fortunately felt better on Thursday, we had our annual Conference on the Young Years conference to attend at Tan-Tar-A. This is always a fun time since we spend out down time at the Outlet Mall!!! I can't miss my Gymboree and Carters fix! Yesterday morning while I was in my second session Scott texted me and wanted to know when I would be home. I told him around 2 and wanted to know if everything was ok. He said that Addysen had been puking and he was trying to ward off a migraine. So after we finished up we went ahead and started home. My friend, Rissa, had a horrible case of laryngitis so she was ready to be home too. Once we got home I ran to WalMart to pick up Addy's formula. Scott had to supplement her days worth with two scoops of Prosobee since we were out of Elecare. That's what we blamed the puking on. They both looked pretty pitiful when I got home. Scott had already attempted a bath but Addy hadn't stopped throwing up enough to get it done. I rocked her for awhile then gave her a 2 ounce bolus of Pedialyte. I got her bath ready and she perked up a little. She does love her bath! We rocked after she was all clean and snuggly but she still didn't feel well at all. Scott and the boys headed out for some pizza (that was the original plan but our little love obviously had other plans). After they left I got 2 ounces of Elecare in her as well with no vomiting but then she got so upset about an hour later. Crying uncontrollably. She never cries like that, it was pitiful. At one point she gagged a I got a whiff of her nasty breath. I knew that smell. STREP! So I packed her bag, texted Scott and we headed to Urgent Care. Thank goodness we did, she tested positive of course. I feel so bad! I tried so hard to stay away from the kids when I knew I was contagious but obviously it was too late :( So after waiting around an hour to get her Keflex, I gave her some Pedialyte and her first dose of antibiotic. This is how she looks this morning:

You got to love all of those brainiacs that develop medicines for us!!!! I'm glad she got sick this weekend and not next. We have extremely important people to go and visit!!! I'm losing count as to how many are going to be at Ella's party but I know we'll be seeing Miss Zoey (since they are graciously letting us crash at their place!!!!!!) and I'm really excited to get to meet Mr. Jax and his sister Arina!!!! 6 more days!!!!!!!!!!!!

Willy Wonka

We just got back from attending the production of Willy Wonka Jr. We didn't see it though. Couldn't see a thing, we were in a room in a church and there were a ton of people packed in and unless you were on the first few rows you couldn't see. We were way back and couldn't see. VERY DISAPPOINTED!!! Jake didn't listen to me after the play (shocking I know). I told him to go get his clothes and come back and we would take pictures. I wanted to get pix in front of the set (since I couldn't see it). He went ahead and changed his clothes, I wasn't happy. So we come on home and I took a few pix outside. So here's my Oompa Loompa, you're seeing more than we did :( By the way, what we could hear was really cute. We couldn't hear very well either but what we did, the kids did a fantastic job! The directors and everyone involved put in a lot of work to this production. It's just really sad that they couldn't have found a better venue. We have other places in town, a fabulous auditorium even. I think money is why we couldn't have it there but I don't really know. So sad.

(some of amazing tie dying skills)

Temple Grandin and a Strawberry

I had the amazing pleasure of spending some quality time with Temple Grandin today!!!! If you don't know who she is, you MUST Google her, she if the most amazing woman with Autism, she is remarkable! I got to go to a Meet and Greet with her before her large talk in front of hundreds :) I wanted to get a pic with her but right when I was about to, she was whisked away for her talk :( oh well, I got to talk to her! (this pic is from my dinky camera from way far away but here she is)

I haven't read her mother's book about raising her, I must go and get it. I asked about working with parents that coddle their children with autism and don't really have expectations for them. She's such a stitch, she said "Well, my mom just whacked that out of me in the beginning. I learned it was unacceptable to lay on the floor at Woolworths." Oh too funny! A colleague mentioned that I am also a parent of a child with Asperger's Syndrome. She so bluntly said "How old is your kid?" I told her 12 ( he will be in 16 days mind u!), then she said "Is he verbal?" I told her that he was and I also have a husband that is most likely an Aspie too (those that have met Scott totally agree!). He asked what they enjoy doing, um computers naturally! I also told her a recent story. I don't remember if I've mentioned this but a couple of weeks ago the boys were outside playing basketball and they got into an argument. I didn't find out until the next day what the fuss was about. Apparently during the backyard game of bball, Cooper felt it was the most opportune time to explain Newton's Laws of Motion to Jake. Jake did not agree, he just wanted to play ball. Dr. Grandin agreed with Cooper, very appropriate time to discuss laws of motion! She also stated that Cooper needs to work in Silicon Valley and solve the energy crisis lol :) She also stated that "geek, nerd and those with Asperger's syndrome or high functioning autism are all the same thing, there is no difference between them". She's so fun! If you haven't seen her HBO movie starring Clare Danes as Temple, you must watch it on DVD, it is a perfect portrayal of her life. It's nice when a movie is about someone and they can attest to the fact that it is accurate!

Now onto the strawberry! No explanation needed, just an adorable little strawberry!

St. Louis Update!!!

What a day we had!!! Yesterday Susan (my BFF) and I went up to St. Louis with Addy for her whirlwind of doctor appointments today. Last night we were all settled down finally and going to sleep when a voice comes out of the walls "Attention, there has been an alarm in the building. You must evacuate immediately, do not use the elevators, you must take the stairs. Repeat there has been an alarm in the building you must evacuate immediately" Ugh! So Sus and I bundle up and get ready to head down 8 flights of stairs. Dreading this immensely! Susan has artificial hips and major hardware in her back, stairs and Susan don't mix well at all! Being the smart girl she is she decides to call the front desk since we didn't hear any alarm and no one else was rambling down the stairs! Fortunately some kid pulled the alarm and we could stay put! Naturally Addy felt it was party time though and it took a bit for her to fall asleep but all in all it was a good night!
Our hotel was connected to Children's so we didn't have to stress about parking which was nice, just took the breezeway across and were good to go!

We started the day at Orthopaedics. I cannot remember the name of the doctor we saw but I really liked her. She moved Addy around and it's no surprise that Addy has extremely loose joints. She could completely turn Addy's hips, legs and feet pretty much all the way around. Not anything we didn't know. She ordered x-rays of Addy's hips since she is such a late walker that hip dislocation is a possibility. Fortunately our little froggie girl has perfect little hips!

They are where they are supposed to be so we are just to push forward with PT and she was fine with Addy's inserts since her ankles seem ok, just her hip and foot is turning in. She thinks a lot of it is just instability due to being nervous walking and she should get beyond it. She wants to see her back in 6 months to make sure she is still progressing. Oh how I hope she is a true walker by then! (earlier is preferred of course!)

Next stop was ENT/Audiology. Addy had her hearing eval first. Both of her tympanograms had peaks! This is a good thing :) She actually did a great job participating in the eval too, she wouldn't wear the headphones (shocker) but she was able to follow directions throughout the eval. She passed in both ears, however, at 2000Hz she is slightly below normal. The audiologist isn't too concerned at this time, it could have just been a fluke, no need for hearing aides or anything. We then saw the ENT and he reviewed her history and said that Addy would benefit from a 3rd set of tubes since she has a history of significant ear infections and we really try to keep her off of antibiotics to prevent C-Diff. So we will be going back to St. Louis on April 15th for a set of tubes.


We had a quick lunch and then headed to Ophthalmology. The office was packed and the doc was running a little behind but we didn't have to wait too long. We saw the doc and he was concerned about her right eye, it's been tearing a lot lately and it definitely was today. He checked her eyes and needed to dilate them. We had an appointment with GI pretty quickly afterward so he told us he would go ahead and dilate before GI and we would come back when we were finished there.

Got to GI and went back very quickly! We saw the resident doctor first, she was really nice and listened to all of my multiple concerns regarding Addy's extreme gas issues, bloating, and stool problems. She thumped on Addy's belly (I've NEVER seen a doctor do this!) She noted that Addy's belly is very full of air. She then said the attending physician would be in to see us. She came in and went over pretty much the same things but she reviewed the films that Orthopaedics had taken and could see all of the air in there too. She said that we definitely need to find out what's going on with her distended belly and gas. She also is going to run some tests to see if Addy is a carrier of C-Diff. She's tested negative before but it's still a possibility. They are also going to run tests on her stool and look further into toxins that could be impacting her as well. We are also going to be venting her g-tube more often to see if that helps. A lot of the air is most likely from Addy swallowing air all day. She sucks on her tongue and does swallow air during the day. No real way to stop it, but hopefully we can address the problems it causes. So we are going back to St. Louis on March 16th for a barium enema, doesn't that sound like fun?? I'm so thankful that she is willing to look into the problems and hopefully find something that helps!

We went back to eye doc and he finished up her exam. Her prescription is dead on! I was a little concerned because when we increased her script we often find this:

But all is good, she is not turning her eyes in with her glasses. She definitely does without them so it's very important that we keep sticking those things back on ! He said that her right eye has a partially blocked tear duct which is causing the tearing of the eye. It's not horrible but it is causing problems. So she's having eye surgery too! They will most likely go ahead and do both eyes since they will already be there anyway. Fortunately they were able to schedule it with her ear tubes so she's getting a 2 for 1!
Now I am one tired mama and it's time for bed!