Wednesday, June 24, 2009

Rollercoaster June

Ben and I on our Sunday walk. It's the same walk I always take Kaylee on, but we stopped at the gazebo just to relax. I love the sky in this pic.

This is the beautiful stream that is under my favorite bridge. It's a wood planked bridge. There is no water under there anymore.... We have been in the 100s for the past week.

The kittens. Mittens is the one on top. They left us on June 1st to go live with Zach and Ashley.

Ben, Zach, Nicholas, and I went to the Renaissance faire. I got my hair braided there! So I have lots of pics for the women. ;-)

Mom and I went shopping at Georgetown, and when we got back Kaylee jumped in the recliner and then onto me! lol I was so surprised. She's never done that before. It was so sweet. She doesn't like it when I leave her.

I finally painted the cala lily for the dining room!!! Yay! I didn't want a background. I just wanted it to be simple and elegant looking. I spray painted a white frame to brown to match the dining room better.

I got all tangled up in my j-tube and TPN cords! Too funny. I couldn't believe it! I just looked at Mom like what just happened. It took me awhile to untangle myself. :-D

Ben's birthday table. I did the ferris wheel and the carousel b/c of the memories attached to them.

I made Carolina barbeque for Ben's birthday dinner. :-) It's the vinegar-red pepper-flake kind. I also made homemade hushpuppies for him. I asked Mom to bring him Mello Yello, and she said I already got some. :-) But she got more so it could last awhile. You're the best Mom. Thanks for helping me give him a good birthday.

Ben opening the gift from Mom and Dad.

It's a softer toolbox. He loves it! So excited.

They also got him barbeque tools. I got him a grill which I forgot to take a pic of! It had a blue bow on it. Anyway, he loves it. It's a barbeque grill. Looks like a Weber. Got great reviews on the internet. Anyway, it has an ash holder and a smaller second grate above it. He already cooked on it. Steak, hamburgers, and corn. Yum.

I got Ben a honeycomb cuz he just loves it.

I also got him a dvd of some sermons that are for men.

I made him a red velvet cake. I asked Mom to make the cream cheese frosting cuz I was worn out from cooking and getting ready. Then I added Fruity Pebbles to the sides b/c he did that the last time I made red velvet cake and loved it. I wrote the words and added the tall candles. Some were sparklers.

I'm laughing because when Ben blew out the candles all this dark smoke came billowing toward me. It was hysterical! But I did start to cough so Ben gave me an inhale. Funniest accident of the whole day. :-D

Looks like a mine field. lol

Ben and I filled all the holes with the frosting. Oh, I added one extra dot b/c it needed that extra red. ;-) I told Ben it was one to grow on. lol

We are sitting behind the streamers about to go to the Aafes store and buy a Wii. We love the Wii!!! It is so much fun to play. And I can play sports!!! It doesn't matter that I can't run. Baseball is my fave sport to play on there. We also enjoyed Boom Blox and Mario. We rented those b/c we are trying to decide which games to buy.

You might have noticed that I'm not in Harry in the last pic. That's because he broke a little more than a week ago. The joystick is messed up. The guy at the shop tried to get it working, but he couldn't. So I have been stuck in my manual that I can't move myself. I am so thankful Mom was here when it happened otherwise it would have been bad. Anyway, I found out yesterday that Tricare approved the part. Now I have to wait for the part to come in which will be 3-5 days. So next week some time. In the meantime, Ben rigged up a way for me to get around. He has cords throughout the house for me to grab and pull. I found out today that I have to wear braces b/c my wrists are hurting a lot more and are weaker. Even with the cords I can't move a lot b/c my arms are exhausted, and my back is really hurting. My back is also restricting my movement. I'm praying my chair will be fixed soon. lol
Mom and I had a great time together. I was able to go to my neurology appointment b/c my mom was with me. It was a long day. The appointment itself was three and a half hours long. They are trying to confirm that I do indeed have CMT and also checking to see if I have some other problems. I will have autonomic testing on July 23rd. After that test, I will have another EMG/NVC. I am dreading that. It'll be my 6th one. Those things are painful and way too long. But if it will help them diagnose me.... Just pray for me with that test.
My j-tube was really hurting me last week and esp. Saturday. I couldn't feed Sat. night, and I had an extremely hard time just flushing the tube. It hurt so bad. Well, I called my nutritionist and left a message. When she called back, and I told her what had been going on she told me to go to the ER. Because, not only was I hurting, sore, and tender, I was also really swelled, and my tube was out 2 cm. So I went. We didn't even have to wait 20 minutes, I don't think. Ben and I had tried to pull it back in ourselves and couldn't. The ER doc said if we couldn't put it back in then they couldn't. So she ordered a CT scan. Then she told me that yep, we were right. It wasn't in the right spot. It was in my abdominal wall. They called a surgeon to come in, and he said the reason why I was swelled was b/c the food and water didn't go into my intestine. It went in the abdominal wall/muscle. I was like ok..... He said it would take a while to absorb, and that I needed to watch for infection b/c it was sugar sitting in me.
Well, another surgeon came and tried and to push it back after he deflated the balloon. (Oh, that was another thing. My balloon hadn't been working right a few days before this. A sign that something was wrong.) Since he couldn't get it to go back in, he decided to go ahead and pull it out. But it didn't come out!!! So weird! They were like oh, no you will have to have surgery to remove it then. They sent me home with an appt. in their clinic the next morning. As I was making supper for Ben, I felt something wet on my shirt. I looked down and saw that my tube had come out! I was like what?! They said it wouldn't come out! Anyway, I put it back in b/c I wasn't sure what else to do! lol That grossed me out. I hate stuff like that. I mean, I just stuck it back into this hole making myself hurt really bad all night b/c it was back inside me. Ben taped it down. I still can't believe I somehow managed to do that. Anyway, it was such a relief to have the surgeon take it out of me Monday morning! For some reason, the balloon worked outside of me! We couldn't figure it out. He was puzzled. Bottom line I wasn't supposed to get that sort of tube in my intestine. It was too short. I don't want a balloon in my intestine ever again!
So it sounds like I won't get a tube again till I talk to my new GI on July 6th. The guys at Darnall want me to get a PEJ. It's a g-tube. That's one that goes in the stomach. It will have a balloon which is fine with me b/c the stomach is a lot bigger. Anyway, they will thread a very long catheter through the g-tube into my small intestine. It sounds like a GI can do it, and it's not a surgery! They do it through endoscopy so it's only a small amount of annasthesia and an easier recovery.
Ok, that's it. Except, my best friend is coming to visit me!!!!! July 3rd to July 13th! Hooray!!!! I had to end on a happy note. ;-)


Megan said...

Wow Mer! Rollercoaster is right! I was wondering what has been going on with you the last few weeks. I'm glad you got to do something special for Ben's birthday and your mom was there to help out. I LOVE your braided hair! Did you leave it up a long time? or did it start to hurt ;) So sorry to hear about Harry and the j-tube; one step forward, two back huh? It's great you are going to have some girly company soon. I would LOVE LOVE LOVE to come be crafty with you.

Maria said...

Actually, the braids didn't hurt! I thought it would, but she somehow made it tight enough to stay but not tight enough that I could feel it. weird. I left it up for 2 days then I left it down for 3. My hair was so wavy! Ben loved it. I have paint all over my hands. The sign is almost done. I want my craft buddy, too!

mil/mom/kathy said...

You amaze me Maria. All this stuff keeps happening and you always are so cheerful through it all. I really liked your hair, you have such nice hair anyway. I'm so glad Ben had such a nice birthday, thanks to such a loving wife. He is so blessed having you. I'm glad to hear your friend is coming. I hope you have some really good days while she visits.

Ben said...

Would the achronym for the husband be Hil for Husband In Law?

Maria said...

you're so funny. there is no such as a hil. i guess that would be an ex. :-D and you are NOT that! ;-)

Anonymous said...

Hey Mer,

I'm SOOO happy for you that your best friend is coming to visit! Okay, on a purely selfish note - I'm happy for your best friend too. :P lol

Your best friend. :D

Anonymous said...

Great Bday pics. I doesn't seem possible that Ben is 26. I still can see him laying in his crib. Wow--I sure do miss him. Thanks for making his day special!!

Tracie SIL :D

Anonymous said...

Funny that Ben wanted barbeque for his birthday! William wanted his cake to be a pig-pickin' cake. There's a whole cookout between the two of them!

Sorry to hear things have been rough. Hope the rest of your summer is smooth sailing!


Anonymous said...

so whats cmt?

Maria said...

cheesy maria tirade! :-D actually, it's charcot-marie-tooth. ;-)