I have to first start with how GOOD my house smells right now! I am in heaven. Brown Sugar and Fig, Warm Vanilla Sugar… we have now started to overpower the poo smell! YAY! I have to say THANK YOU to our friend Nancy in Arizona who sent us a whole box of Bath and Body Works goodies!!!! It always makes my day to come home to a package that I didn’t expect! Thank you so much for your thoughtfulness and generosity! Our noses thank you!
I know I have been absent from blogging for a while but life has been quiet and we have just been enjoyed the calm. Ky is doing well… still puking about once every other day or so but we are kind of getting used to it. We battled the pemphigus diaper rash and won! The flare up has been gone for almost two weeks! In light of the pemphigus we discussed with Megan that it would probably be prudent to visit an immunologist to check for auto immune or other immune system issues.
Tomorrow we will travel to Cincy again for allergy testing with Dr. Hasad. I am NOT looking forward to it at all. I remember being prick tested as a kid and I could have nightmares about it forever. Knowing what I know about my child, there is no way we can hold her down for that. I am a little apprehensive about it. The nurse called today to confirm the appointment for tomorrow and I missed the call. I wish that I had gotten to answer it because I would like to have asked some questions. Oh well I will ask tomorrow before we get started. They say the appointment can take up to 2 hours… fun. All I can do is be the mom I am… I filled out all the paperwork which is quite redundant and attached her 13 page summary to it. I hope that is enough info.
In other news… I have been spending a lot of time working on planning Ky’s shindig birthday party… tent, tables, chairs are rented. Linens are chosen, food is planned, Candy Buffet is nearly complete… working on decor now… invitations are addressed and being sent tomorrow! Most of all that CAKE is planned! I got the privilege of meeting with Brenda of the Sugar Forrest (one of my FAVE wedding vendors in our city!) and picked out the perfect cake… Brenda even drew the cake up right in front of me.. I wish I had thought far enough to take a PIC of the sketch… but here are the ideas that I gave her to work with so you can imagine how gorgeous its going to be!
Popularity: 1% [?]
beautiful cakes!!!
How many people are coming to Ky’s party? It sounds like a Gala event!
I hope the appts go well today- do you know when you’ll be getting over to the immunologist (hey- ONE dr we actually don’t have right now for EIthene!)
I’ll be looking for the update from today- poor Ky- Eithene wasn’t fond of her allergy testing, and we only did like 5 things- I can’t imagine having to go through the entire 200+ spectrum- that would be ROTTEN!
Jessica
http://www.caringbridge.org/visit/eithenerosehilliard
ps- i LOVE the songs on your blog- they are GREAT! I esp like “Jesus bring the Rain” -that is what I want my attitude to be!
Hoping all goes well today!
Oh, and if I’ve been a goober and not RSVP’ed… we’re coming!
Wow glad things have calmed down a bit for you all. And how exciting your princess is turning TWO!!!! Question…what does a Candy buffet consist of exactly???LOL
Hey Girlfriend,
How did the appt go? Hope it wasn’t torturous for either Ky or yourself and that you came away with a few answers or ideas of things that need to be investigated further.
I love the birthday cakes, what a wonderful party it would be, shame we live so far away and will miss the “shindig!”
Love to your little family,
B
So, how did it go?
Hoping Ky’s pemphigus stays under control.
I think about you and Ky alot.
ooohhh, love the cakes! I am at a loss for what to do for Ellie’s bday because of all of her food allergies! Blah!
Hope Ky’s testing went ok. Ellie just had the RAST test (blood test) because we were pretty sure of what her anaphylaxis was from anyway. But Jordan had the skin pricks.
I am glad it has been quiet! Have missed your blogs though! And hoe I wish we could go the the big shin dig!!!
Mindy
Wow . I didn’t even know there was 200 things to test for . Maggie’s allergist only tested her for 50 things and told me that was all they could test for . Which stinks because we know she can have wheat and soy right now but for some reason not wheat bread . So there is something else she is allergic too but we don’t know what. That is pretty standard for Maggie though. Getting rid of one allergy only to find another and most of the time we don’t know what its from. Maybe Cincy has a better allergy team ???? If you ever have time to share let me know . Our Children’s hospital is so old and old fashion and it just stinks its truely not funny anymore.
It sounds like your going to have quite a party. Wish we could do something like that for Maggie because she so deserves it. But unfortunatley all our so called friends are too busy to be friends with us anymore. Wished we lived closer we’d be there in a heartbeat to celebrate your cutie patootie’s birthday.
I didn’t think there was anything strong enough to rid of the evil poop smell. That was so nice that someone sent you those. I’m not sure whatever happened to the person from your group who was supposed to send us stuff. We only recieved “Bear ” that Maggie so dearly loved and the Calmoseptine. Which I was every so greatful for. One never realizes how wonderful butt cream is until you have a child that has constant butt rash. LOL.
I hope Ky does well with her test. Maggie surprised us and did really great and didn’t cry not once. We must of had a good nurse doing that or what I don’t know. Maggie had been too busy crying after she smacked her head in the waiting room of the doctor’s office. That’s next , bubble wrap! LOL.
Oh yes before I end it hear I found a caringbridge family that goes to UK and they see Dr.Joe too !
Here is their website:
http://www.caringbridge.org/visit/makaylagilliam
http://www.caringbridge.org/visit/margaretreed1
Thanks for that link Tracy. I will have to leave her a message. About your donations from the photogs… I dunno who was sending what. I told them to ship it straight to you. I know that those two things were posted on the forum but I dunno what else. A lot of what has been donated to us from our blog has come either anonymously or from people who I cannot even figure out how I know them…. I have had a couple of photog friends donate but I am still trying to trace some of the donations! LOL Its amazing to me that people don’t care anything about us knowing WHO things came from… they don’t want glory or recognition or anything… they just want to do something amazing… that blows me away. I am so lucky!
~Amber~
Great pictures of Cake!!
Best Wishes!
Wendy