Why am I still awake at 2AM??

So, I'm sitting here drinking my hot chocolate, watching TV and I think to myself - I haven't looked at my OWN blog in FOREVER! I came on over and what did I find - 3100 views - REALLY?!?! On my boring, never make a new post blog?!?!?!? cool.....

Things are just going around here. I feel like the only time I blog is when I have something to complain about - so, here goes...

If you've read my blog before you know that I had my esophagus replaced when I was 9 and follow up surgeries after that etc... and that last year I was in the hospital because I couldn't swallow anything following an endoscopy. Well, last month I ended up in the hospital b/c I couldn't swallow anything because I coughed too hard and my esophagus swelled up. Long story short (too late! haha), I had a swallowing test done last week just to see what was going on. Yesterday I felt my throat starting to swell up again (for no reason at all this time) - it wasn't hospital bad, but bad enough that I called my GI doctor (Dr. D). He looked at my swallowing test and deemed another endoscopy with dillitation necessary.

Monday is my big day! Monday afternoon I am going in for my proceedure - needless to say, I'm a little FREAKED out given the results from last time.

Enough bad medical news - on to the explaination of the title - why AM I still awake at 2AM? I am a hobby cake decorator and a good friend asked me to make a Minnie Mouse cake topper for a cake that she is making for her daughter. Of course I said - SURE! Now I would like to go back in time and kick myself!

Bet you didn't know that Minnie Mouse is a pain in the a$$! I have worked on her for over a week and tonight I went to work on her head etc (my figures are made out of fondant/gumpaste and are 100% edible) and noticed that not only had her leg broke, her shoes cracked and her bow fell off her shoe, plus she was leaning as if intoxicated. I informed my friend of the issue and tried to salvage 3d Minnie, it didn't work. So, I moved on to make a 2d Minnie - DISASTER - don't ask why - I don't know, it just didn't work, AT ALL!

So, I took a deep breath, said a prayer and when to Cakecentral (cake decorators bible online - hehe!) And what do I see on the HOMEPAGE - 3d Minnie Mouse! It was a little bit different than the way I wanted her to look, but hey - God sends a message and I listened! I am proud to say that after a week Minnie Mouse is 90% complete. I decided that I had had enough for one day and sat down to drink my hot chocolate, remembered my blog etc etc etc.....

Now that the hot chocolate is gone (to my hips) I am going to B-E-D.

Goodnight my 3100 readers - thanks for stopping by!

Janel

MacKenzie's 2nd Year....

The Dentist Part II.

So, on Thursday I am headed back to the dentist to get the other half of my teeth cleaned. I am already stressing about it and my mouth is still broken out from last time. At least this week they are putting me to sleep totally. I am hoping that it won't be as bad as I'm expecting. I could really use some prayers though.

I am really excited about Easter - even though I probably won't be able to eat anything! My dad asked me to try to replicate the Coconut Cake that his mom used to make. I'm kind of excited that he asked me, I know its hard to explain but it was sort of an honor for me. (I know that sounds so silly!)

So, anyway - I have a really busy month coming up, but I'm really excited about it all - I have 2 really cool kids birthday cakes to make and I'm helping a friend make 2 cakes for her Derby party. I'm going on a cruise with my friend and then i have a killer graduation cake to do - and that will all take me into June!!

Well, it is getting late, I have been up hoping for a Jonah update, but I'm just a little tired, so its off to bed with me!

Just a Quick Update

I thought that my mouth was really great after the dentist, but the swelling has not yet gone down and it is pressing the inside of my cheek against my teeth = blisters. So, I'm pretty happy on Oxycodone right now - but I just had to get this post out there -

JONAH'S HOME!!! Amen!

The pics from the Williams Family Blog - ADORABLE! He looks so precious and content and happy! I just know that he will thrive in his home environment!

I just had to get this out there!

Plus, when I checked today, I had hit the 2000 views milemark!! whoo hooo!

Goodnight to all!
Janel

Oh how I HATE the dentist!!

Ok, so I took a Zanex before going to the dentist and I guess that helped a little bit. The problem is that the dentist has a really hard time getting my mouth numb because of all the scar tissue inside my mouth. Basically, novicane is injected in the "area" that needs to be numb and is supposed to spread out to the surrounding areas, well because of the scar tissue it just gets stuck in a pocket and it really hurts. They only clean 1/2 of my teeth at a time because it takes so long. So, right now I look like a stroke victim. 1/2 my face is totally numb and drooping - of course Shaun made fun of me! What are husbands for!!

After this experience I found out that the other office that my Dentist has does full sedation - WHAT!! Why didn't someone tell me that before - I am so much more pleasant when I am knocked out! Had I known this I would have gone there, gotten the drugs and had them do my whole mouth!! Well, I am having the other side done that way - I just cannot take the novicane again - it hurt so bad!!

Ok, enough whining and complaining, the numbness is wearing off - slowly!

I have a great snowflake cake to make for this weekend for a friends daughter who is having an ice skating party - I'm pretty excited especially after getting my new cake decorating dvd's!! So that is what I will be doing all day tomorrow!

What's on your agenda??

(by the way, after I type these I am generally too darn tired to go back and proof read - so please accept my appologies for misspelling and typos and grammatical errors - just goes to show I am far from perfect - haha!!)

The Dentist

I need some prayers today - I have a dentist appointment - which for an EB sufferer is like .... well, I just can't seem to think about anything as bad as the dentist.

Anyway - basically, I'm totally FREAKED out!!

Thank you all so much!!

My profile picture

I had an inquiry as to my profile picture and the absolutely ADORABLE little girl in it (OK, so maybe I'm a little biased!) - Yes, she is my daughter and no she doesn't have EB - praise Jesus!

The picture itself is 4 generations of Gorman women - my grandmother (84), my mom (age unknown - haha!), me (34), and MacKenzie (2).

Our decision to have a baby was not one that we entered into lightly. We wanted to get our DNA test done before we got pregnant, but, the insurance company wouldn't pay for any of that test and it was very expensive. We did not have the funds to get the test done. We did see a genetic counselor who told us everything that we already knew.

Dr. - your family suffers from a dominant form of this disease which mean that each child you have has a 50% chance of having the disease.

me - yes, I know that - however, I do not have the disease the way the rest of my family has.

Dr. - you should have a DNA test done to find out what kind you have.

me - yes, I know that - however, we don't have that kind of money.

Dr. - good luck with whatever you decide - please come back and see me if you get pregnant

me - great - how much did THAT just cost!!

Basically, Shaun (husband) and I sat down and had a very frank discussion that was based on God and God's will. I said, lets just get off the birth control and if we get pregnant then that was God's will and if the baby is healthy then that is God's gift to us, and if the baby isn't healthy then God must have big plans for our baby.

So, we just left it all up to Him. We had a fairly large team of prayer warriors during the pregnancy too!

After I got pregnant the insurance company paid 100% of the DNA test where I found out that I have the recessive dystrophic form and that my mother is a carrier (my father HAS dominant dystrophic).

If you have EB and are thinking of having a baby, I suggest that you see a genetics Dr. and then get the DNA test and then if your faith allows - put it in God's hands.

On another note - although I am still broken out and fairly uncomfortable, my energy is back today and I have actually gotten some laundry done! whoo hooo!!

Thanks for your comments! Keep em coming!

Janel

I am so uncomfortable!

That is the best way to describe how I feel right now. I have joking told people that I am suffering from Post Traumatic Stress Disorder, but that is truely how I feel. Now that the whole insurance fight is over so is the stress about it - and now the skin reacts....

I am having a very bad EB breakout right now. I have a thousand little blisters and sores all over my body. I itch everywhere. Most of my sores burn and itch. And a little while ago I was just sitting here and felt a really bad spot on my back just split all the way open. My mouth is broken out and it hurts really bad and making it difficult to eat and talk. I am exhausted and it really just hurts to move. Everyone always asks me how I feel - well, now you know. I usually lie and just say that I'm fine, its just not worth spelling all that out.

But if you asked me right now how I feel, I would just simply say that I'm very uncomfortable.

Anyway, my point for this posting was to let those readers who have EB children that are too young to express themselves or those that are not familiar with this disease to hear how EB skin feels sometimes.

Hopefully I will feel better tomorrow or the next day.

Please continue to pray for Jonah Williams, hopefully his mom and dad will be able to take him home soon!

Oh well - I doped up on some Oxycodone for pain and I'm now off to dream land where EB doesn't exist and doesn't hurt poor innocent babies!

Feel free to comment! I noticed that my views have increased and I would love to hear about all of you!!

Janel

Best Week EVER!

Shaun's vacation was last week and we went to Gatlinburg/Pigeon Forge for a whole week - WE HAD SO MUCH FUN!!

Shaun and his sister and her boyfriend went skiing. M is still too young to ski and I was NOT feeling up to it. One of my blisters became infected as soon as we got there. Good thing I have a supply of antibiotics on file at the pharmacy! A couple days after starting the antibiotic I was feeling much better. We did ALL the touristy things in Gatlinburg/Pigeon Forge - with the exception of Dollywood b/c it wasn't open. We did Wonderworks, the Aquarium, Ripley's museum, the Jurassic park ride, Apple Barn Farms, A great steakhouse (name I can't remember), and Dixie Stampede AND on the way home we stopped off for the Mayfield factory tour and ate some great ice cream.

We broke our road trip up into stops so that it wouldn't cause so much stress on my skin. We stayed in Atlanta on our way, with Shaun's parents and then stayed in Gray at my parents house on the way home. That seemed to help with my blisters, but I still came home with twice as many as I left with - oh well, that is just the nature of the disease.

I continue to pray very hard several times a day for Baby Jonah, he seems to be improving and that is such a blessing.

I am now praying very hard for my SIL, Ali - she is completing her phlabodomy (sp?) degree and was hoping to get into the nursing program. She has an opportunity to work at Emory in Atlanta and should she get this job she will be able to get her nursing degree for free! She is so deserving of this opportunity!

BUT! my BEST NEWS EVER!!! are you ready for it people..........



MY UNUM LONG TERM DISABILITY CLAIM WAS APPROVED!!!!!!!!!!!!!!!!!!!!

I can see clearly now the rain is gone.... To say the least it is a fantastic day at the Waters residence! I just want to thank everyone for your continued prayers and blessings - PRAISE JESUS!

ok - off to eat some dinner and the young one ready for BED!!

Praying for Jonah

It has not been the best week for Epidermolysis Bullosa. Yesterday morning a precious 7 month old baby boy named Jameson died. Please pray for his family in Orlando.

Then a couple days ago a beautiful baby boy named Jonah was born with EB. Jonah is a trooper and seems to be healing, however, he is having problems feeding and they are not sure why. They are waiting for the ENT to come and look him over and see what they can do to get this sweet boy to EAT! The Williams family has been through a very trying time over the last couple years, please keep this family in your prayers and pray that Jonah will eat and pull through.





As for me...I am still working with my insurance company. As some of you know, the insurance company requested an independent medical review - I saw a dermatologist of their choosing in February, we are on the final 45 day countdown to a decision. So, I am now asking for your prayers as well - Please pray that the insurance company will make a speedy and favorable decision on my case.

In the meantime, we had a WONDERFUL family vacation to Orlando for "Have a Heart for EB" - My mom and dad and my brother, sil and nephew, Shaun, MacKenzie and I all got to go together. Unfortunately, Shaun started off the weekend with a pretty nasty head cold/flu and then while at Magic Kingdom, poor baby MacK started running a fever of 101. I have never seen her that sick. She was so lethargic and pitiful. It just broke my heart!! We kept her pretty doped up on Motrin for the rest of the trip and she was OK at Epcot on Sunday and was back to normal on Monday.

We are completely finished potty training - thank goodness!! She still wears a pull up at night and sometimes during her nap, but she is so proud of herself. She is also in a BIG big girl bed. Another of her favorite things right now.

She has moved on from Dora and landed smack in the middle of Max and Ruby and Hello Kitty (meow, meow).

Well, I am off to make a monkey cake for Bailie's (Jen's Daughter) 1st birthday!! CUTE CUTE CUTE!!