Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Sunday, November 29, 2009

Two more weeks

Just two more weeks before we head to Boston, and it couldn't come at a better time. Dean and I have both noticed that Angela's swallowing has gotten more difficult. Weds morning before school she had something stuck (and I can't, for the life of me, remember what she was eating.) She ended up drinking 3 LARGE glasses of orange right after the get her esophagus cleared. She would take several big gulps, the she'd stop and would make the throat-clearing type noise that she does. (that I can't duplicate, but it's not what you and I do!) Only to start guzzling her juice again. All for one or two bites of food.

It is awful to watch your kid go through so much pain and discomfort to do what she needs to do in order to survive....EAT! And yet, she never complains. I'm sure it's because she doesn't know any different. She doesn't know it's not supposed to hurt to eat. Needless to say, I can't wait to get to Boston!

I have the itinerary for her time at Boston children's. We'll arrive in Boston on the 13th. We're lucky that we're arriving in town early in the day, so we'll have the afternoon and evening to get together with some friends there. Some are my downsyn friends who we'll be meeting for the first time. I'm hoping we get a hotel with a pool so we can just have a pool party. Wouldn't that be fun? Not only would it be fun, but a good way to spend Angela's last night before a very difficult week. Now, if I could just loose 35 pounds between now and then. LOL

Then on the 14th we arrive at the hospital bright and early at 7:00 a.m. to meet with the anesthesiologist in preparation for later in the week. Fortunately Angela has never had any trouble with anesthesia, so I don't have any worries about this. At 10:00 she'll have an Upper GI and cookie swallow test (the same ones we did at Mayo last spring.) Then at 3:00 we'll be meeting with Dr. Nurko, the pediatric GI specialist. We're scheduled for a 90 minute consult with him (I'll be bringing the DVD player and a movie Angela has never seen! LOL) Then we're done for the day!

On the 15th she'll have an endoscopy with biopsies, and have the manometry probe placed in her esophagus. I'm not sure how long that stays in place, but she does have to eat with it in so they can see how well her esophagus contracts. (Our specialists here say little to none.) Once that test is done, we're done for the day so we'll have time to see some of the sights of Boston.

On the 16th she's on the schedule for another endoscopy, this time with dilation. This is where they try to dilate her esophagus to make it bigger. I'm pretty sure this is a "schedule it, because we can always cancel it" type of situation, hoping that Dilation will be the fix she needs! Once that procedure is done she'll stay overnight in the hospital to make sure she's swallowing ok, and that it did, indeed, help her. If it doesn't work, I'm not sure what comes next.

We'll scheduled to be on a flight home early on the 18th. I think it's going to be a long week! I'm not sure which part Angela is most excited for, sleeping at the hospital (without Mom because I've been ordered by her highness to sleep at the hotel! LOL) or the flights to and from Boston! LOL I've never met a kid excited about the hospital before. I guess that should be a good testament to the Children's Hospitals and Clinics system here in the Twin Cities. Obviously Angela is very comfortable with the hospital. She's had plenty of unpleasant experiences and surgeries, so their other services must far overshadow the bad stuff!


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Lund7 said...

Sounds like a busy schedule. Won't it be wonderful to have it all done before Christmas though??

Any idea what time swimming is this week?

Coffee this week????? I would have Peter as his class is done at the high school.