Butterfly Kisses & Bedtime Prayers

"Butterfly Kisses after bedtime prayer. Stickn' little white flowers all up in her hair. Oh with all that I've done wrong, I must have done something right. To deserve a hug every morning and butterfly kisses at night". *** For parents of children with diabetes and adults who are living with Type 1 diabetes. We are looking to share stories, ideas, concerns, and laughter.***

Friday, May 19, 2006

Great news for once..........

We went to the new Endo today. What a nice guy! We are now part of the Nemours Children's Endo Clinic. They were great. First they checked her HBA1c right there. Too cool. We always had to go for a blood test. She was 7.6. A bit higher than in March when it was 7.2 but then again she was sick a couple weeks ago. Anyway, the doctor sees us and he is soooooo nice. Really great bedside manner with Carylanne. He is happy with her overall numbers and care. Then he explains how the clinic works. 24/7 coverage whenever we need to reach someone. There are 3 doctors there. Then there are CDE's and a dietician all on staff. The whole thing about keeping her out of the ER and calling them first for anything. Great!!! Then he tells us IF she ever needs the ER which one they trust etc. Big relief to know what I would need to do. So the CDE comes in and talks with us. Offers some suggestions and gives us some new sets to try with her. It ws suggested that we see the dietician as we never have been able to and she is gaining weight a little too easily. The dietician is a Type 1 himself who wears the same pump as Carylanne. So great! We see him on our next visit. Carylanne was very happy with her new doctor. Me too. They didn't even scold me for not keeping good records. We download our meter but I know I should be better at writing things down too. But they are happy with 7.6 so they aren't too pushy. So this was just a great relief.

Then I must say that all your good thoughts and prayers have paid off this week so much.

First on Monday we get to see a hand specialist and finally Dave will get his surgery. Surgery is not usually a great thing but he has been in so much pain and cannot work with his hand like it is. Now we will know for sure what use he will end up with, ending our speculation at what job he will be capable of. Plus it should end this terrible pain. At least that is the doctor's goal. The insurance actually appoved the surgery within 2 days and it is confirmed. WOW they never work that quick.

Then Tues as you all know I got my dream job back. Yeah!

Wed was not too good. Dave had an appointment at the VA. Always stressful. Plus he was in more pain this week due to being prodded on Monday.

So Thurs we went to Disney. Our answer and escape these days. We had a great time and got to see things we always miss. Like Cinderellabration. Dave really would like to get a full-time job at Disney when he is better. They do not pay as much as some companies BUT the benefits are worth a lot. Plus we found out they have great healthcare. I think that is why their payscales "seems" low. It really isn't when you add in great benefits.

So we come to Friday and get to meet this great doctor. The week is going really well. Finally things are looking up.

Then they get a little better. You see we were never paid properly from the army for our mileage home. We sent in the paperwork twice and they sent it back to us asking for more info. We were getting so frustrated as we were expecting about 1000.00. Well we get home this afternoon to an email stating that we are being paid 2007.00 and should have it deposited by tomorrow! WOW!!!!! They owed us for mileage but also for travel expenses that we figured we never see and had settled that at least getting the mileage would be great. Oh Boy what a relief. That helps us continue on living on our savings and my part-time pay. He will lose unemployment for 4 weeks during his recovery. (we would have gotten paid by the VA for that time BUT we cannot keep waiting for them to schedule him to see a hand specialist. It has been since March and still the doctor hasn't looked at the referral. Anyway he can't keep waiting. The damage is getting worse the more time goes on. We will try to get paid disability from them once his claim is processed. BUT I won't hold my breath.)

So things are looking up for us a great deal. Tomorrow we will be at MGM for Star Wars weekends. The girls want to meet Jedi Mickey plus the actor who plays Chewbacca among others. Real cool.

Thanks to everyone for their prayers and encouragement. I will have a glass of wine tonight and savor the new feeling of things going right for once!

Wednesday, May 17, 2006

A whole new world-Disney World

I got my dream job back yesterday!!! Starting on May 30th I am officially back at Disney. I was so excited! 6 years ago when we tried to move to Florida I got hired for the Magic Kingdom. A job I had wanted since I was a teenager. I had to give it up however when Dave went active. I had just begun training. I was told then that I could always come back. I was nervous all this time though that maybe I couldn't. Well I decided that even though its a bit more of a drive than I wanted to make it was the only place I really wanted to work. So I went in yesterday and got my job back. Only this time I am going over to the World of Disney in downtown Disney. It is a bit closer to get to than Magic Kingdom. For now anyway. I hate the idea of leaving the girls and letting someone else (even her father) take care of the diabetes but I know it has to be done. I know they can handle it all its just hard to leave. My first attempt at a job was such a disaster and I was trying then to be so close to home. This time I am about 45 mins away. But when I am at Disney I am enjoying what I do and where I am. We will move closer next year so this is temporary being so far away.

Until May 30th we have so much to do to prepare. Plus Dave is having surgery next Thurs. I wouldn't go to work until after that. They are going to try and salvage what the army doctor screwed up. Let's hope they can!

Friday we go to the new endo. We are going to a program at Neumours. I am excited to get her into a whole clinic thing again. Dave wil be with us so he will be right up on her care. I will only be working part-time but still he needs to be back in the swing of things again.

So many changes coming up. I am excited and a bit scared as well. But this whole year has been full of that. The girls are excited about me working at Disney. The perks are great and they feel better knowing I am there. Even if it is a bit further from home.

Sunday, May 07, 2006

An Extreme Act of Kindness

This is a story that if it didn't happen to me I may not beleive it. Last week while shopping at Joann Fabrics we began to chat with a few people over at the embroidery machines. We had set out for a ride to explore new areas and have been trying to find things for our new apartment. That days venture brought us to JoAnn's to search for fabric for kitchen curtains. Mickey Mouse (found the perfect material). As I was getting it cut Dave was looking at the machines and chatting to an older couple. We have wanted to get one for a long time. Mainly because we have talked about starting our own business and have gotten set up on EBay when we were still in Hawaii. Anyway this woman began chatting with me and wanted to show me what she had made. It was a beautiful clock and the background was all embroidered. As we were looking at the machines and the girls were chatting with this nice woman Dave commented that he would love to get me one soon. But not one quite as expensive as everyone was admiring. A Brother most likely.

So this nice woman turns to me and says, "I have a deal for you".

Ok.....

So she takes me a bit aside and tells me that if we come pick it up, she has a new Brother that is ours. I'm thinking this is a joke or a set up. I am even leary of sweet old ladies. She states she got it and never uses it because she has a bigger one. She had been waiting for someone to give it to that she felt wuold enjoy it and use it.

WOW!!! So she gives us directions to her house. Then says she is leaving now for home and we can just follow her and get it then.

So we followed her home. Visited a little. She was a wonderfully generous woman. We offered her $$ twice and she would not take it. She gave us a new Brother embroidery machine with several pattern cartridges. Its a DISNEY machine. Too cool!!! She also gave me a craft case adn the girls a smoothy machine. She had been clearing our her home. She lives alone and had no family down here. What she gave us was worth over 1,000 $$$.

Well I was speechless. I have never run across such a nice woman. We told her that if she needed anything to please call and let us repay her kindness.

So now I can create things with my new machine. Make nice shirts and embroider everything the girls have!!! We haven't gotten to make too much this week but will have that as a new hobby and/or business in the near future.

I am still amazed at the whole thing. There is a true silver lining somedays!!!

Tuesday, May 02, 2006

Thanks

Thanks for everyone's words of encouragement. (and boycott of Wal-Mart). I am trying each day to see the bright side but somedays its really tough. From everything the Army did to us it feels like the biggest slap in the face to serve your country, for what? We served right along side Dave. We moved around. We waited long hours for him while he was away, we lived in substandard housing. All in the name of serving our country. Now Dave is broken and will never be the same. We get doors closed with every turn. A different answer every time we talk to the VA. He has been waiting for over 5 weeks for an appointment just to see the hand specialist. Still they have not even looked at the referal never mind get him an appointment. HIs hand gets worse. We wait. The answers we get are "Well you'll get back-paid" or "Don't push too hard or your claim will get pushed to the bottom of the pile". This is how our veterans are treated. We are not alone However Dave was forced out while still broken. They knew the surgery had failed and still put him out. He was told to get the next surgery at the VA and not there. More ordered than told. He was enlisted and we were not able to fight the system anymore. Ellen, you made a great suggestion. I would love our story be told. Then I start to think that they won't want to tell it. That many people out there are going through tough times and what makes ours worth telling. I can say that we were treated horribly by the Army. No regard for having a child with so many medical problems. (In fact we were given just 6 months medical insurance. After that we are on our own.) Dave still can't work and I can't go to work full-time and leave them all day. He applied for social security disability benefits because his injuries will take over 12 months to fix. But of course that takes 4 months or more to maybe get. But I am not counting on it. Its a government agency after all. We are surviving on 247.00 a week from unemployment and living off his severance pay. I am greatful for that but the severance pay is a real shaft to veterans. He got this pay from the army due to being put out. However once his claim from the VA is approved he has to pay back the severance because the government considers it "double-dipping" What a bogus concept. Dave would have gone for his 20 years and gotten pension and full benefits etc. Because they screwed up he was put out early. Therefore the severance should be just that/ But once he gets a VA claim they say the money was actually for his injuries so it has to be paid back. Nice huh!!! I would just get a job to support us all but I haven't worked in many years. I am paralyzed with fear to leave them too much as it is. We are in a new home that we are not adjusting well to. I am not liking it here at all but we cannot afford to move. I feel horrible for the girls because we desperately want to find a good home for them and settle down for good. The money from the severance that I hoped could be soaked away for a home someday will be eaten up just to live on. Our Disney tickets were the bright spot for the girls in all of this. We can escape the world and go there for a day.

Well if anyone has any suggestions of contacting a news show or similiar I am all ears. Ellen suggested us telling our story but I don't know where I would tell it or if anyone would care. Is it so wrong to just want to settle down as a family and have our lives back again?

Thank you all for listening (reading) my self-pity bitch fest. Maybe its PMS talking. I will just try to gather up our family for another day of "looking on the bright side" Lately that has been that Dave made it out of the army alive and is not in Iraq right now. That is a lot to be happy about!