Hello Mother, Hello Father

Do you remember that song about Camp? I DO! I sang it for a school talent show when I was in 6th grade. LOL 

Camp is a BIG affair that requires a LOT of planning. There are supplies to be bought (travel shampoo with easy-to-open tops for Angela, body soap in a similar container, etc.) new swimming suits to purchase (long story there) and bags to be packed! 

Then you have to get all this stuff together. While Angela was busy helping Dean cook dinner on the grill, I was packing Angela's stuff for camp. I might as well have hung a 'do not disturb' sign on my neck, because really, if I lost concentration there was going to be a problem at camp later! 

I got all the stuff together, and laid it out on her bed. 

I know this doesn't look like a lot, but that's because I have a secret for packing a kid for camp! You see those little zippered bags? I've been collecting them for months! LOL They are the bags that new sheets come in, and boy are these bags handy! In the picture below you can see why. 
Each bag holds an entire day's outfit!!! Now, it's fortunate that camp happens in the summer months, and summer clothes don't take up as much room as winter clothes. LOL But, that big pictured above holds a pair of shorts, tshirt, underwear, socks, and a bra. So, when Angela gets up in the morning, she only needs to open that bag, and put on everything it contains. I packed long clothes too (jeans and sweatshirts and stuff) for the cool evenings, but this time of year you don't need as many of those, so you they can be packed separately. When my boys were younger and went to camp, the LOVED that I packed their daily clothes this way, because they didn't have to THINK when they got up. LOL What you don't see pictured here is the giant bag of meds I had to send along as well!

Angela and I had a long day ahead of us. The drive to camp is 4 hours, but we had a *slight* detour (of about 3 hours) to make first! So I had to wake her up at 4:30 a.m. Poor baby! I was secretly relishing the payback for all the times she's woken me from a sound sleep! I hated to disturb her sound sleep! 

And who doesn't love a mother who snaps a picture when your eyes aren't even open yet?

Ah, daylight! She did really well with all that driving we had to do! 

All the way to camp she kept repeating, "You drop me off right? Just leave, I'll go by myself!" When we got to camp, she was number 63 of 91 campers to be checked in!!! Aaaaahhhhhhhh We arrived when they were on number 32, so we had to wait awhile. She BEGGED me to LEAVE already! "But Angela, I have to meet with the nurse to go over your meds, and we need to unpack your stuff." Oh, she was very frustrated with the fact I was hanging around! And, she did NOT want me taking pictures. Actually, it was pretty clear that I was not to talk to her, or appear at all like I was with her. You know we had that 13th birthday a few weeks ago. LOL

While we were waiting to get checked in, we found out that the camp had closed early during last week's session because of confirmed cases of the swine flu!! Oh man! Have I mentioned Angela has a weakened immune system? The hired an outside company to come in and sanitize the whole place. All the new campers, and the counselors were checked over pretty carefully to make sure there wasn't a repeat this week!

FINALLY it was time for me to go, and FINALLY Angela let me be seen in the same vicinity as here, and to take her picture. Here she is on her camp bed. She sleeps in a hospital bed at home, so she's sleeping in one at camp too! When she went to this camp back in the spring, one of the other young ladies brought a stuffed animal and a blanket. Angela is not attached to any particular items, but she has spent these last 3 months reminding me that she wanted to bring this stuffed turtle. We did not bring a blanket though. 

And that is where I said my goodbye. There were other girls bringing their stuff in, and her counselor was helping them say goodbye to their parents. (they weren't quite so eager for their parents to leave as Angela was! Should I feel good or bad about that?) 

I called yesterday to see how she's doing, and was told by a counselor, "She's doing great!" and that's about it. I'm going to assume no news is good news, and go about my week enjoying doing NOTHING!

Bathed and ready to go!

I know some of you have been following the story of Holly. Today she had her last bath here, and tomorrow she'll be going with her forever family. Holly is a beautiful dog, both in body and spirit. We're sure going to miss her!

Fun in the sun

Last weekend, Angela's buddy Adam had a little incident with his new bike. Ever since, she's been quite concerned about him! But Adam was thinking ahead too, so he brought home some medical supplies so he and Angela could play hospital. Their favorite game to play together! (And yes, his mom and I stay RIGHT THERE so nobody is getting TOO involved in the game!) 

Then it was time for some swimming! Angela and Adam spent most of their time in the pool practicing hand stands! I love these videos, because I can't help thinking that 2 years ago, neither of these kids could swim, much less put their faces in the water!

A few days ago, I stumbled upon a crime scene in the living room. Someone had snuck into the house, put my kid to sleep, then left!

Today she was also practicing floating. I don't know about you, but this picture gives me the willies!

How smart is YOUR dog?

 Because Dudley and Holly are retrievers, they feel the need to bring me a present whenever I come in the door. They usually bring me shoes, but they will bring whatever they can find in a hurry. "Oh look! Here is mom's bra! Surely she'll want this."  or how about, "Oh! Dad left this beer can here, I'll bring it to him!" Often, when they bring me shoes, Dudley and Holly will bring me a matched pair, each carrying one shoe.

But this day, Dudley decided to beat Holly to it, and brought me the pair himself! Since my shoes are usually scattered all over (because there is a house full of dogs carrying them around!) he had to look to find the pair! What do you think, is it a $10,000 contender? 

And, just for fun, here's the scene in our living room tonight! You're welcome to count them, but DON'T ASK QUESTIONS!!!!!!! LOL

Narrowing the choices

Well, the University of Minnesota is out as for as the esophageal manometry goes. Our choices are now Milwaukee, CHOP (children's hospital of Philadelphia) Boston, and Cincinnati. Between our regular pediatrician and the dr. at Mayo they'll be making the decision on which is the best place to send Angela to. According to them, "Angela's case is very unique, not to mention complicated, and she needs to go to the place that not only does the most manometry, but has seen the most unusual cases." 

I'm voting for Boston or CHOP, since I know people at those places and can make it a fun time!

A new kind of shopping

Today Angela and I went shopping for a couple meals worth of groceries. I talked alot about soft foods, and "hard foods". But I explained that for her "hard foods" are things that are "hard" for her to swallow. I talked to the point that her eyes glassed over and I believe she was rolling them at me. Finally, when she stuck her tongue out at me in frustration I decided to just shut up and shop.

I did spend a fair amount of time on breakfast stuff. This is the most difficult meal to get her to eat, and all of the "soft foods" she can eat are things she doesn't care for. She doesn't like oatmeal, or hot cereal in general, or eggs. I can get her to eat eggs if I call egg salad "yellow salad" instead, but she'll ask me as she takes each bite "No eggs in here, right?" This morning for breakfast I made  her malto meal with bananas in it. Yeah, she ate all the bananas out of it and left the rest. Bananas aren't the greatest thing for her though, since she's so easily constipated! UGH, this is going to be a balancing act!

Speaking of constipation, since she can't eat bread, I've been wondering how I get fiber into her? I got the brilliant idea to get some metamucil, only to find that the label has this warning label:

Choking: Taking this product without adequate fluid may cause it to swell and block your throat or esophagus and may cause choking. Do not take this product if you have difficulty swallowing. If you experience chest pain, vomiting, ordifficulty in swallowing or breathing after taking this product, seek immediate medical attention.

So, no Metamucil for Angela! I got her some Benefiber instead, and it didn't have any of those warnings, so we'll see how it goes! 

Angela did ask about pancakes. I'm not sure about those...the way she chews (or a better description would be how she DOESN'T chew) she tends to swallow each bite in a big wad, and I could see that getting stuck. 

I'm still on the fence what to do about camp. She's eaten this way for 12 years, so what's another week while she's at camp? If I change her food program for camp, that puts her into a totally different category, and she won't be able to attend this camp, instead needing the respite camp instead.  What are your thoughts?

Well, I told Dean an hour and a half ago that I was headed to bed. And, as I type this I realized there is paperwork that is due to the county tomorrow that I haven't even started yet. So, off to get that done. 

Oh, Angela started ESY this morning. (It actually started yesterday but we were at Mayo.) She was THRILLED that there are friends there she hasn't seen in a couple of years! She came home SO HAPPY. Not to mention exhausted. She had softball tonight and fell asleep on the way home. When we got in the driveway I couldn't wake her up. Finally after several minutes of poking and prodding, she opened one eye and said, "Mom, I'm so tired. I'm going straight to bed." Which is exactly what she did! Gotta love that!

Still Chugging along

Angela and I are still chugging along with her appointments at Mayo. Today was very long, and very boring! Our morning visits (OT, then video swallow, then OT again) went by quickly, but the second OT visit ended up taking about 5 minutes so we had THREE AND A HALF VERY LONG HOURS to kill before our next appointment with the Ped. GI. UGH!

We killed some time outside at the fountains, and found some awesome live entertainment going on. An a cappella group that was fantastic! 

Finally we met with the Ped. GI. That was the visit I'd been waiting for. She's pretty sure that at sometime Angela had a stroke within her brain stem. On the video swallow Angela is able to swallow liquids without any problem, but solids are clearly and issue! She does an amazing job of protecting her airway, but it's tons of work for her, which is why she closes her eyes when she eats! She's concentrating so hard on relaxing so she can swallow! 

She needs to have esophageal manometry done, but finding a place that does it on children is difficult. We know that CHOP (Children's Hospital of Philladelphia), Milwaukee  and Boston Children's does it, but we still need to find out of the University of MN does or not. We know the Children's Hospitals and Clinics (that's the Minneapolis and St. Paul group) does not. If we can't get it done here, and if I had the choice, I'd go to CHOP because I know people there. LOL 

For now there is a major diet change in place for Angela, and I'm still trying to sort out in my head how to explain it to her in a way she will understand. Basically, if it crunches, she can't have it. Anything bulky (hamburgers, chicken nuggets, any type of breads, meat, blah blah blah) are no more. She can have things as thick as mashed potatoes, but that depends upon their consistency. Sticky stuff is no. Hot dogs would be O.K. if chopped up because they're kind of slippery. Canned fruit, particularly peaches,  are O.K. provided she chews it well. 

Once the manometry is done we'll know what, if anything, we can do next. Those results will tell us if dilating her esophagus, along with botox injections to the area, will be beneficial. If not, she'll have to stay on this diet forever. If it is possible, it should last for a couple of years at a time before having to be redone. 

On the 17th we meet with the Neurologist at Mayo who will probably be ordering additional tests.

Tonight she and I will have a talk, and then I need to go grocery shopping for approved foods! 

Waiting

Sitting in a huge massive waiting room at Mayo clinic. This morning we met with the OT for awhile, then have a video swallow (To check the mechanics of her chewing and swallowing) then meet with the OT again.

Then we have a break for lunch, and after that we meet with Dr. Freese (GI) to go over what we know so far. Our last appointment is scheduled for 3:30, so we'll be home right around dinner time. It's supposed to be hot so I think an after-dinner romp at the beach will be a good way to end the day!