Snow & Snowball fight in July!

On Monday afternoon, we drove up a mountain road (that had only been open about 3 weeks, because of the huge amount of snowfall this past winter). This mountain road is directly across from the continental divide outside of Pagosa Springs. At the top of the road is a radio transmitter tower, and several areas for hiking.

We didn't do too much hiking, but took advantage of the snow to have a July Snowball fight -- and Grandma made a little snowman!!

Colorado Scenery on Monday

This is a view of the mountains from one of the scenic overlooks near Pagosa Springs, Colorado.

This is Treasure Falls. It's not too far from our condo. We drove to several local area scenic points on Monday.

Amie isn't very happy with all the car seat time, but is enjoying "run"ing!!

If she starts getting crabby, we say, "Amie wanna get out and walk?" She will say, "No Run".

And that's exactly what she does & has two new knee scraps to prove it!!

Fun on the road......

Summer 2008....we're traveling to Colorado for a family vacation: Mom, Dad, Tim, Amie & Grandma Miller.

So, with two very long days on the road, of course we have to come up with creative new "toys" to keep Little Miss entertained.. right?

After all, that is what my parents did when I was a child. Have a hidden bag of new things, that were given out sparingly over the course of the trip.

Well, when I was shopping for the little tidbits of entertainment, I decided that markers would be a new adventure for her ---- luckily I chose the washable markers!!

Pictures to share

The young girl cousins....Alex (oldest of the young cousins), Amie & Kylee (next oldest).

Daddy's little helper -- she wanted to get right in the action when Darwin was replacing the windows in the house this spring.

Grandma w/Amie on "Crazy Hair" Day for school in May.

Cardiology Visit

Amie had her 6 month cardiology visit a few weeks ago.

Everything is holding steady!

When the arch was repaired the second time when she was 7 months old, they had to use cadaver tissue -- cadaver tissue does not grow with the person, so monitoring the repair is vital. So far so good.

Additionally, the aortic valve must be monitored to measure the pressure gradient. It is currently only slighly increasing each visit. We probably have at least 7-10 years before she will need to have a ballooning of the valve. Then it will only be a matter of a few years after a ballooning procedure that she'll have to have the valve replaced.

I had planned to put a picture of her actual echo on here, but I keep forgetting to bring the CD home. So, I found a picture on the net of aortic stenosis. Amie's valve doesn't look quite like this though, because only one of her leaflets is thickened and not moving well.

Immunology & Amie.....

Igm

Amie had her follow-up appointment with the immunologist yesterday & it was quite interesting.

It appears that her immune system is better than many little ones that had a "hypoplastic thymus". Our immunologist (who by the way I think is wonderful!) has consulted with the guru of immunology from Duke & they are both surprised with her results.

It appears that her base immunology cells (I hope I get this right) -- the Igm is extremely low (normal is 47-240 & hers is 29). The Igm is supposed to be the baseline for all other immunology cell building in the body. So, you would think with this extremely low Igm the rest would be low as well -- right??

Well not so fast, some how, some way -- little Missy has built quite a nice amount of Iga & Igg's (not a perfect amount, but a pretty spectacular amount, since the base is so low!).

Next we talked about the different T & B cells & again -- many things are low -- but not as low as they expected. Some of her immunity from vaccinations is actually in the normal range (some not so good).

The way she basically explained it is that her body doesn't know exactly what to do when a foreign substance invades her body (like the vaccines) -- so it doesn't do quite as good of a job of building resistane.

Additionally, she is at increased risk for infections of any kind. So, we will have to be careful to make sure that if anyone knows of someone that has an infection -- we keep her away from them.

The immunologist also found two journal articles that discussed immunology issues with the chromosome deletion of 16p11.2 (that is the deletion that we recently found out Amie has). Evidently, there is a gene in this area that is specific to the thymus & immunology...so again -- we're pretty darn lucky that she's doing as well as she is!!!

Update on the whole family.

Well I guess I should have done a better job of doing an update of the whole family!!

Christopher, as I said is working at Wal-mart. He's a greeter in the automotive department. He's a very good greeter & "up-saler". Their department has seen the most up-sales since he started, because he does a great job of suggesting additional services when customers come in. Of course, as a consumer, I dread those up-sale suggestions! He's working steadily to get his debt down to a manageable level, so that he can make some decisions in the fall (college, apartment, whatever). Of course one of the bad things here in Galesburg, is that the economy took a HUGE hit over the past 5 years when Maytag & Butler manufacturing both closed. So, he's lucky to have a job, but there are no benefits yet (Wal-mart does most of their hiring as part-time).

Timmothy is working in a sheltered employment two mornings a week doing data entry. He seems to enjoy it for the most part, but has had some problem with that wrist that had surgery a few years ago. I'm going to look into some other ideas for him, possibly doing some volunteer work at a vet clinic nearby to see if there is anything in that arena that might fit him better. The good thing for him being here in Galesburg, is that we have public transportation that he has used from time to time. Although, there are some draw backs to that, but so far so good! He has a good friend that he met while he was in high school here, that comes over a couple of times a month -- so that's great!

Darwin is LOVING being a home-Daddy on Wednesday's! He has a hard time not being a "stay-at-home" Daddy full-time -- but he at least has more time at home with her than he was able to spend with the boys. It's just kind of funny how things are so different being "old" parents now instead of such young parents when the boys were little. I don't know what he would do if he weren't able to do the 4 day work week. In fact I don't know what we'd do, because we try to set up msot of Amie's appointments for Wednesday's so he can take her! She has her 6 month cardiology appointment coming up -- so we are hoping that the aortic valve is still doing ok!!

Me -- I just crazy busy at work! I now have about 54 employees & still no assistant! We finished the huge building expansion around the first of the year & I finally have a real office! But, the OP imaging department is well under way! In fact, we should be moving into it in August. I am working on hiring some more staff to cover those areas as well! We are also working on an expansion for our cardiology department, which will give us a second nuclear camera. So, as you can imagine -- crazy, crazy, crazy!! But wouldn't trade it! As much as I miss Gibson -- I know this was the right move for us for so many reasons!

Other than that, we're just gearing up for next week to start Amie's daily therapy sessions. She'll have an hour of speech (with the electrodes on her throat) & an hour of physical therapy (to work on the scar tissue in her chest -- theoretically, this should help her with her breathing coordination with swallowing). Then, we'll have the cardiology appointment, a re-visit with the pulmonologist & the follow-up with the immunologist. So, you can image the next several weeks are going to be BUSY!!