Piece of OSU history

My dad got to a point where he was unable to use his computer so he had Mike put a bunch of pictures and stuff he had scanned on a disc which Mike then put on our computer as Papa's Pics. Evan and I were looking thru them the other day because of course MANY of them were of Evan, Jack and Sam. I came across this-a scanned image of the program from the first event at the Schottenstein center-it was a basketball game in Nov. 1998 and I went with him. I totally forgot about it. What touched me is that he wrote my name on the cover of it, documenting the fact that we went together. If you click on the picture itself, you can see it better.

The waiting continues

So, we still don't have any answers to Evan's eating dilemma. After talking with Evan's pediatrician on Thursday in regards to Evan's upper GI results, she convinced me that I probably should let the docs in Cincinnati know what is going on. So, I emailed the GI and told him what's been happening and he emailed back in about 10 minutes. This is why I love the people in Cincinnati! I also love that he signed the email "Ajay" which is his first name. Anyhow, he feels as though it's probably time for an endoscopy and said that there are good GIs here in Columbus and if I wanted someone local to take care of it, I could do that. I immediately wrote him back and said no way-if we can help it, I don't ever want him being put under here in Columbus due to his airway. I also told him that since we'd be coming down, I'd like to go ahead and have Dr. Cotton (ENT) scope him as well rather that wait until our scheduled time in December. I just hate to have Evan put to sleep so I try and limit the amount of times it happens. Dr. Kaul was so on top of all of this because when I called the aerodigestive clinic the next day to talk with one of the nurse practitioners about scheduling, she told me that Evan's on the schedule for their weekly meeting-they meet Wed. mornings to discuss patient issues and that I'd get a call Wed. afternoon. He's still scheduled for a panoramic xray of his mouth on Thursday and then his video swallow study will be the 22nd.

I DON'T WANT TO DEAL WITH THIS ANYMORE. I'M SO TIRED, SO STRESSED AND SO WORRIED. (I'm yelling as I'm typing-I feel much better after doing so).

BTW, did you know that today was National Tater Day? Go eat some french fries!!

Oh no, it can't be

I realized something yesterday. I am going to be 45 in two weeks. 45!!!! What?? Really?? I am going to be in my mid-40s. Oh no.......................

One test down.............

Evan had his upper GI this a.m. Poor little guy was so nervous even though I assured him it wouldn't hurt and that he'd had a couple before. I was honest though and told him that the barium would probably not taste very good but other than that, it was a very quick and painless procedure. I have to say that I was very impressed with my employer today because his appt. was at 9:30 at a off site location and we were back in the car at 9:50. Anyhow, Evan thought it was all very cool because he was able to see his esophagus and stomach on the video monitor right next to the xray table and while he didn't like the taste of the barium, the tech put Nesquick in it so he said it wasn't too bad. The radiologist doing the procedure said that he really didn't see anything out of the ordinary for a TEF/EA kid-his esophagus is narrow at the surgery site (we know that) and that he has little to no motility in his lower esophagus (we know that too). Anyhow, there were no glaring issues such as extreme closure or stricture at the surgery site. So, good news. Bad in that we still don't have any answers to the whole eating (or should I say not eating) issue. I just want to pull my hair out and bang my head against a wall. He's going to PA with Mike tomorrow until Sunday. I'm hoping that Mike will get a feel of the stress and frustration that I'm feeling because he sure doesn't act as though it concerns him too much. That's a whole other story for another day.

I'm back in the land of the living

Poor Evan was put on the back burner yesterday-it certainly wasn't the best Easter we've had. :( He's quite the trooper though. He took good care of his mommy and daddy last night when we were both feeling so bad. I managed to take one picture of him yesterday before falling back into bed. I feel much better today so we're going to get out of this sick house and see Horton Hears a Who with our friends the Crawfords. I am in need of some fresh air!

Another holiday gone bad

First we had the Thanksgiving of '81 in which my family, aunt and uncle and 2 out of 3 cousins came down with food poisoning from a corn casserole. Then we had the Christmas of '02 (I think) in which a skunk decided to spray under my parents porch and therefore infiltrate the house and all that was in it with it's lovely odor. Funny story-Mom, Liz and I went to Hallmark the next day and the cashier said that she smelled skunk-I said, that would be us because it had permeated our clothes and coats. Now we have Easter '08. Unfortunately I was hit with the stomach virus at 12:01 a.m. and ended up spending much of the night in the bathroom, not sure whether to sit or stand-I'd then end up on the bathroom floor because I thought I was going to faint. My mom has been hit by the same thing (she spent the night with us Thursday-the same night Evan got sick). So, I'm sad to say I didn't get to church (my favorite Sunday of the year) and I will not be going to my brother's for Easter dinner. :( Evan is better which I'm grateful for but I'm just waiting now for Mike to get hit with it. Hope your Easter has been better than mine! I'm off to bed.........................

7:46 PM Guess what? I feel even worse than I did this morning. Still very nauseous and now I feel as though I have the flu-very achy and freezing. Mike is feeling the same way. Does someone want to come and take care of my child? I'm throwing a pity party for myself, can you tell?? :)

Not a size 6

But I'm not huge either!! I'm so tired of putting on what I think is my size and having it be either too big or too little depending on the manufacturer. What's even more infuriating is having a size (blank) be different within the same brand!! How can that be? I give up. I feel as though I need to go in for a gastric bypass or something-clothing designers (and the media) make women feel as though they are huge unless they are able to wear a 6 or less. I hated my body when I wore a size 8-after today's fiasco at Kohl's while trying on clothes, I hate it even more!! So I came home and drank 2 beers and ate some malted milk ball eggs. :)

It's been one of those weeks

Mike turned 40 on the 17th so in order to celebrate, we were able to get away for the weekend at a place in Amish country called The Inn at Honey Run. We went up to Cleveland on Friday morning to go to the Rock and Roll Hall of Fame Museum, a place Mike has wanted to go since moving to Ohio 10 years ago. I got a kick out of seeing the red leather jacket Michael Jackson wore in the Thriller video since Evan is such a fan!! We then went to the inn later that day. It was so relaxing. We stayed in one of the honeycomb suites (2nd picture)-one of 12 rooms that were built within the hillside. We had a gas fireplace, a jacuzzi tub and breakfast delivered to our room each morning. I could of used more than a weekend there, that's for sure especially after the past couple weeks we've had.

Evan is having some trouble with eating but it’s not as cut and dry as food just getting stuck. He’s complained for the past 2 ½ weeks of having a hard time swallowing. He chews and chews until it’s like paste but then says he can’t swallow it. He swears that nothing has gotten stuck recently nor does it really hurt. He says it’s “uncomfortable” to chew with his back teeth (he does have molars coming in) so then he’s chewing with his front but still hesitating when it comes to swallowing. He’s been very weepy too. We’ve seen the pediatrician and his speech therapist and he’s having an esophagram on Tuesday, a panoramic xray of his mouth in two weeks (his jaw is very small so we want to see what’s going on with his teeth-he’s not lost any on his own-3 have been pulled) and then a video swallow study on April 22nd. Why the hell do I have to wait so long?? Anyhow, I haven’t contacted his GI yet in Cincinnati-that will be after we get the test results here. I just didn’t feel like dealing with them just yet-I love them all to death but I really didn’t want to drive 2 hours for a clinic visit. If we are dealing with the esophagus, then I will definitely go down for an endoscopy-no one here is going to do that!! Top it off, he’s only gained 2 lbs in a year so we’re back to Pediasure. I haven’t filled the script yet but have gotten him to drink instant breakfast which has all the same nutrients in it. So, he’s back to yogurt, pudding, pasta, eggs, etc.-the same stuff that he could only eat when he was 2 1/2 and 3 yrs old. I still make him try some other stuff when I can sit with him but as far as school goes, I’m just sending the soft stuff. I just want to cry. To top it off, he's got some type of stomach bug. He came home today saying that his stomach didn't feel good-he didn't want anything to eat or drink. He was very lethargic-finally about 7:30 he threw up (while sitting on my lap of course). I got him in bed about 8:30, went downstairs to watch TV and then came up at 10 and Mike was in his room. Unfortunately he didn't hit the trash can that I had left by his bed. I'm in for a long night.............

March 9th

This date is one that I will always remember for two reasons: it was a day of great joy in 2001 when we brought Evan home from the hospital and a day of profound sadness in 2005 when we first met as a family with hospice to discuss my father's need for their services. Tears were shed on both days. In 2001 I was happy to have Evan home but extremely scared as well. How in the world were we to take care of this 5 lb baby with a trach and a feeding tube? In 2005, I wasn't happy at all-just scared and sad. How in the world are we going to be able to take care of my dad?

We celebrate this day every year with Evan. No gifts are involved (much to his dismay) but we let him know what a special day it is for all of us. We got up this morning and bundled up (it was 11 degrees out) and walked to a restaurant at the end of our street called Tee Jayes. Let's just say I would never eat anything but breakfast there! Evan loves it though so off we went. It was very strange to be out because there were hardly any cars on the road-it was very quiet as it had been all weekend. The place was pretty empty when we first got there but then it started to fill up-mostly families with kids that needed to get out of the house!

I've been trying to upload pictures but something seems to be wrong on Google's end so I'll just try tomorrow.

Blizzard of '08!!

I'm sick of it!! We did walk to Kroger so we at least got out of the house. Thank God it's right around the corner. I managed to stock up on beer yesterday and today we got doughnuts, hot chocolate and stuff to make tacos!! I'm just hoping that Mike doesn't have a heart attack while shoveling our LONG driveway. He went to our neighbor's to see about borrowing their snow blower and of course it's broken! I'm going to go have a beer now......................

I can't even imagine

I got a call from my sister this morning telling me that the brother of an old friend of mine took his own life yesterday. My friend lost his mom a few years ago, his dad a couple years ago and now his only sibling is gone. I can't even imagine how that would feel, to be so alone. To lose every member of your family. It makes my heart ache for him.

Green Stripe!

He got it!!