Linnea bowled on Saturday. She did pretty good. Her first game was a 59 and her second game was a 30 I think. We took her ball to the pro-shop afterwards and had them re-measure her and plug and re-drill it so it will fit her hand better. They called us last night and said it was ready, so we’ll probably go pick it up tonight. After bowling, we went to K-Mart, so that was my outing for the day. How exciting. Saturday evening Michelle Jensen and her daughter Brianna brought us Longhorn Smokehouse & Dilly Bars for dinner. Brianna looks like she is doing great after her 2nd back surgery which was on Sept 10th, I think. Kids just bounce back so quickly.
Sunday was my birthday. I think I slept in a little. My mom called and said she was going to come up for a few hours. She got here a little after noon I think. Bryan and Linnea had gone out for some last minute shopping. When they got back, my mom was already here. Since Kai had copped onto my chenille blanket, Bryan and Linnea picked out a new one for me. This one is like a soft fleece and is twin sized so it will come up clear around my neck and will still cover my feet. I also got some new little speakers for my laptop. The speakers on my laptop aren’t that loud and Kai had found a decent little pair at Dollar General, so I thought they would work pretty good on my laptop. They also got me a Halloween shirts that says “Ladies Night” w/ a witch flying across the sky and the smoke from her broom lights up when you move. It’s funny. I told them that means I will have to go out w/ the girls to celebrate Halloween. Sounds like the perfect excuse for a night on the town.
Joanne & Johanna Barnes (from my Marfans group) came over around 2:30 and brought a couple of pizzas, salad, and ice cream for us. They also brought Kai & I books and Linnea a movie, some Ty beanie babies and few other things. They are so thoughtful. We had a good chat and laughs. I think that is the night we watched “What Happens in Vegas” w/ Ashton Kutcher and Cameron Diaz. That was pretty funny. Then of course, was the opening episode of the new season of Desperate Housewives. Wow, what a shock that one was. I didn’t think we would have shot forward 5 years! That’s an awful lot of time unaccounted for……probably a couple of season’s worth. Then it was the new season of Brothers & Sisters. It was a good day.
Monday, Bryan went back to work, so I have to be up now at 6:30 to make sure Linnea gets up and gets ready for school. Kai is still doing half days at school. Monday morning was hard for me. I didn’t have anyone here w/ me and I really hate being alone. My mind wanders to dark places and I don’t like going there. I’m going to have to figure out what will distract me and keep me on the bright side to help the healing. I spent most of the day surfing the net for information & people related to Loeys-Dietz. Again, I think we are very lucky having such minor symptoms/characteristics. There are so many more people out there who have more of the symptoms and more severe.
Tuesday was more of the same. Wednesday wasn’t much different either. The only new thing on Wednesday is that I have now started using Silicone strips on my big incision. I had it on for only about 2-3 hours yesterday to see if I was going to be alright w/ it and not have a reaction. All went pretty good. In fact, it actually feels really good on there. It’s like a cushion and prevents things from rubbing up against it, so this may turn out to do double duty. The incisions where my drain tubes were aren’t healed enough yet to put anything on them. In fact the right one still has a thick scab on it. It may be almost another week before that falls off. I had heard that the Silicone strips were the best scar removal thing you could get, but they are VERY expensive. Good thing is they are re-usable. Well, Sloan had some left over from when Emily had a wreck; she gave me enough to cover my big incision and maybe my drain tubes too. That would be great if I could really get this thing to be flat, pale like me, and thin. It may take up to 6 months or more, but it is comfortable, so I don’t mind. I put a bra on for the first time today since the surgery. I figured since I have the silicone strip, it will cushion it and I am hoping that the bra will help me pull my shoulders back and stand up straighter. The pain in my chest, shoulder & neck make me hunch forward and that kills my back, upper and lower and it’s just a vicious cycle. So far, so good, but it’s only been a couple of hours. Not sure if I can do it all day.
Today, Phillip & Mary Kae came over for lunch. Spikey was a bad dog, barking at Phillip and carrying on. I finally had to crate him. And Avery kept screaming for French fries. Darn animals. It is nice to have people come over to see me. I don’t feel quite so secluded from the world. Kai called after German class and said he was not ready to do full days yet, so I had Bryan go pick him up when he got off work. I told him that he can do half day tomorrow, but next week, he needs to get back to full days. He is no longer coming home and taking a nap or lying down; he just plays on the computer. If he can do that, then he can sit and concentrate at school.
Kai and I got our tickets in the mail today for Avenged Sevenfold & Buckcherry!!!!! We are both so excited. I had promised him I would take him to a concert, but I wanted it to be one that I would also enjoy and wasn’t too expensive, so I found out that Buckcherry was coming to the Coliseum here in Bloomington, I was thrilled. The Coliseum is pretty small so it doesn’t matter where your seats are, because anywhere is a decent sit. AND, the tickets were only like $32.50 a piece + fees, etc. That is a great price for tickets to a concert in a small venue like this. So I ordered them. It was even better when it let me use all my 13,000+ points on my American Express card to pay for the tickets. Ended up only costing me $17+. Kai is pretty excited too. Everyday he comes home and tells me of another kid at school who is going to the concert. See, mom knows how to ROCK!!!!!!
I called Dr Bridwell’s office to see if we could get an appt to see him on Oct 15th (when we see Sharkey) or Oct 16th (when we see Moon), but he was not available either one of those days, but could see us on Oct 17th. Sorry, we are not staying in St Louis for 3 days and having the kids miss that much school and Bryan miss 3 more days of work. So, I called Pegram's office and explained to them that it is time for 6 month follow up on spine for scoliosis and now that we know we have LDS, then both kids should really be evaluated/x-rayed for Arnold-Chiari Malformation, which is an instability in the cervical spine, like at C1 – C3 or 4. I’ve always said that the headaches I have and the neck pain that I have has always been from a misalignment in my cervical spine, so I am also going to ask to have those x-rays or whatever is the best way to see it. I think I would rather do an MRI since there is no radiation and God knows I have had plenty of that lately. We had already been told once, last year, about Linnea having instability in her cervical spine by the Spinal Institute over in Champaign, but when they did a CT scan, they said all was ok. However, that was taken w/ a straight neck, not flexed or extended, which is the only way to check for Chiari. She wants us to go back to Champaign since we can’t get into Bridwell, so I told her I would go as long as we saw Herford and not Osterburg who is just a physician’s assistance. I am not dealing w/ less than board certified, licensed full physicians anymore. Well, we can’t get in to see him until Oct 31st. So, I think either later today or tomorrow, I am going to call Bridwell’s office and see if they will order the necessary films for up here, we can have them done and mailed to him, have him read them and if they are significantly different than 6 months ago, then we will spend the 3 days down there if we have to. But if they are not significantly different, then I think following up w/ Herford is fine. I just don’t want to get too many people involved, but going to St Louis so many times is getting really expensive and time consuming. So, I’m torn. I don’t even know if Bridwell will agree to do this or not.
I have joined the Loeys-Dietz Syndrome Foundation and have now posted and emailed a couple of people. I do feel better about not being alone in this. I really think we can help each other get thru all that lies ahead of each of us and our families. Everyone is very supportive and a genetic counselor who works w/ Dr Dietz is on the forums too and comments often. I think it will be a good resource for us.
Other than all that, not sure if I have a whole lot to say. I am spending my days trying to learn more about the internet, myspace pages, HTML, and the sort. Man, it is so hard to keep up w/ Technology today when it is developing so quickly. Linnea’s cold is getting better. The weather has really cooled off this week. I still have the A/C on, but it hasn’t run in days. Heck, this morning when I woke up, it was 67 degrees in here. That’s ok, I sleep better in the cold and frankly, since it has cooled off, I don’t spend all days swimming in my sweat. Or maybe, I am finally getting rid of all those nasty hospital drugs and starting to get back to normal. My feet are always freezing, so maybe I am getting back to normal.
Gonna watch some movies later: Mamas Boy, Ironman, and Witless Protection. Tonight is the Vice Presidential debate. Ho Hum. I know I should be interested, but I just can’t bring myself to it. Well, let’s see if the rumors about Biden are true….will he withdraw from the vice presidential nomination and give it to Hilary? How will Palin do? Will she put up an intelligent fight? Or come out looking like an amatuer all bruised? As far as I am concerned it is just the lessor of all the evils. There really are no good options at this point. There needs to be someone who has been a successful business person who is well respected and rightfully so….earned it the old fashioned way. That’s the person we need in the White House to balance the budget, control our enemies, leverage our allies, tighten our borders, & utilize all Americans to unite and strengthen our country. I am not sure who that is since I am not up on the financial/business reports. Do any of you have any good ideas?
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