Sunday, March 18, 2012

2nd Birthday Party!

Lillian had her 2nd birthday party... held at Morgans Wonderland in San Antonio :0)
I cannot wait to post so many more pictures, she had a great time, dispite her having a rotten cold...
I am so thankful to my friends that came all the way from houston and my family from all over texas! We made it two years... they were SO long and SO hard and I know its not going to be changing anytime soon...but things are slowly falling into place. And I thank God for all my struggles and for my blessings...
show you pictures soon! xoxox

Wednesday, March 14, 2012

If it aint one thang, its another!

Lillian and I had an ER visit yesterday to DELL CHILDRENS hospital here in Austin,Tx. I had been concerned about her right leg looking a little chunkier than the left, and then yesterday (tuesday) her OT commented about Lillian not wanting to bare weight on it. I was scared to death that it was going to be a fracture and that I would go through the ringer with CPS again... NO FRACTURES! We came home last night, I continued lymphatic massaging to see if the swelling may be edema, nothing changed so we had to go to get 12 cc's of blood drawn for her today at ST. DAVIDS hospital. They are checking her blood levels, thyroid, para thyroid, calcium and some other things I cant even remember!
It is common for girls with Turner Syndrome to have thyroid issues and since she is reaching 2, an age where most girl are first diagnosed with TS, Im hoping that is what it is. They are also checking coritzone (i think) levels because it is common with AGENISIS OF THE CORPUS COLLOSUM that those levels may be off as well.
She recently had a minor rash, that the pedi. assumed was excema, and I treated it by using EMU oil- best stuff ever!! But along with the rash she has had red puffy cheeks and constipation... all within the last month, so I am assuming all this blood with give us some answers! HOPE!
During the blood draw today they had to poke her twice- which is nothing compared to a normal visit, I really thing the lymphatic massaging, reducing the edema in her hands and feet had to take part in them actually being able to get veins today! And out of each poke they got blood... only had to do a second one because she jumped and the needle came out of her vein on the first :0(
She fell asleep and the nurses were worried- I explaned that this was not the 1st... nor 2nd... nor 50th time that we have been through this, so Lillian knows the drill! May as well take a nap!
Her first nurse ever, Amber, comes tomorrow and is going to spend a full day here! It'll be the first full day! And I am thrilled to get tons of errands accomplished in one day! In fact... I have put off all my errand runnnig this week knowing that Id need to keep busy thursday!
Cant wait to post pictures of Lillians 2nd birthday party this saturday!!
Keep the bug in your prayers until all the blood work comes back!

Monday, March 12, 2012

updated pictures

Sleeping April 2011

Doctor wait.. 2011

Summer 2011

The times I dont feel like sitting like a big girl i get a floaty for bath!       

ear drum ruptured. no fun. very scary. all turned out well.

Halloween pictures 2011

me and my angel

pebbles and the mama devil

Lillian with her wonderful Mia. She loves her so much

being silly with my girl

family ranch house.

first time at a jumpy place!

dont worry, we werent driving!

My best friends wedding :0)

Shopping girl

austin life

Sorry about the wait...

My account was hacked into and this site had been down for awhile and with the busy life Lillian has me leading... I am just now getting on to see... the issue has been fixed! So Im going to post a few pictures of her year as being ONE year old... and SATURDAY is her 2nd birthday party!

I wish I was organized enough in my life to write down our daily events... but I dont... So here is a very short, probably completely inaccurat recap of Lillian being one year old.
So right before she turned one, she got her GBUTTON and FUNDO. ... well well well.... THAT didnt last long, she pulled out her gastro. tube before it even had a chance to heal!! What a story that was!
My mom left to take Lillian to the emergency room and forgot that I never got in the car!!! She got all the way there until she realized she was alone with Lillian... and my mom... ha! she was a wreck... when i walked into the ER, Lilli was in her car seat still buckled and next to her in the chair was my mom, with her sunglasses still on her face. red as hell.!!! She thought I had been in the car the whole time!! yes... she isnt good at the crazy situations~ it takes a special type of person i guess!!

Summer of 2011 was fun, I took lilli to the river, she got in the cold cold water and loved it... She got tubes in her ears in July 2011..
She was pebbles for halloween :0) the cutest thing ever!
In November we moved to Austin with Ms. Kaitlin Werring... It has blossomed me into the mom I hoped to be... and Lillian has blossomed so much as well! We have switched therapy centers a few times, but, I found one Im confident in and love to death. And things are progressing! Lillian still takes GH shots nightly. And is still gtube fed every 3 hours. She is on pedialyte now. At almost 24 mmonths old she is 27 1/2 inches and 22 pounds! She is rolling and almost ready to get into that crawling position!
She had a set back in January when we noticed swealing in her left leg- it was 3 fractures.
She had a HUGE cast on for 6 weeks and they healed well. She has low bone density and is on suppliments. I havent learned too much about it yet, but will soon from the doctor. Just taking us a while to get in....
I hope you follow us on facebook because I definalty keep that updated daily!
I just hired a part time nurse through MDCP for Lillian. And Lillian LOVES her- she is young and happy and lilli loves that. I am interviewing more nurses this week for a more full time nurse. Im looking for work now that all of this is FINALLY coming together. And plan on going to school full time now.
Im ready to get mine and Lillians life on a roll....
I thank all the postive people supporting us, and thank all the negative people for opening my eyes to see brighter futures for my daughter and I.
Lauren & Lillian