Happy Birthday My Ivee!!!!

My baby is 6 years old today. We have reminisced so much this weekend on how we never knew if we would ever see Ivee have this many birthdays! I feel so incredibly blessed to celebrate another year of life with Ivee here on this earth. I am reminded everyday of this when I see the pictures of links of friends that will only see their child again in heaven. 

Well, we celebrated like a Princess and had a great time at Ivee's Birthday Festival of the Lanterns. Enjoy the pictures of our celebration this past weekend, and if you would like, leave Ivee a birthday message here. I will read all of them to her!

We begin with Ivee's Rapunzel/Tangled cake. Mom likes to experiment and try new things. This year it was sugar art. Unfortunately, as I suspected might happen, humidity won out on some of it. My grass art didn't quite make it over night to the party. Some managed to stay upright, however! 

Mom took a shot at this Pinterest Idea. I combined some ideas to come up with Jello sailboats. 

I spent a couple of months planning and this past week making most of the decorations. Here are the festival pennants, and some frying pans! :) 

Couldn't be a Tangled festival without lanterns. I spent a couple of nights drawing, cutting, taping, and gluing about 15 of these! 

We are blessed to have so many friends who love and cherish our baby girl. Wish we had room to invite them all. Many have shared Ivee's journey with us. 

Getting some lovin' from Mrs. Cathy, Angela and Catina!

Present time!! 

The candle really tried to win that night. It took MANY tries to get that thing out! 

(This one just kills me!) 

Favorite Cousin in the whole wide world. They are so precious together. She loves her Haley!  

The Princess on her royal Trike! Ms. Elana and Mr. Brian got her three license plates to change out. Ivee chose the "Jesus loves me" tag and mom put "Spoiled" on the front! Oh, is she, and she deserves every bit of the spoiling!  

The decorations and paintings once the sun went down, from our porch. 

Lanterns and turtle pond all lite up!  

I spent Tuesday baking cakes, cleaning and painting this mural for Ivee on the back door! She loved it so much she gave me sugars without asking!!!! 

Anna, Brittney's bestie, helped with painting as well. She relived the moment of Rapunzel letting her own lantern go. 

 Brittney brought us some nature and Pascal!!!! 

Thank you God for your every blessing on this family! For the things you have taught me, things that I could never have learned without this journey!!! You are a gracious and loving God and I thank you for the miracle of Ivee I see everyday! 

May, Updates, Scans and Birthdays

I wish I had more time to come and just write on my blog, to tell a nice story layout, but there is always just so much to do. My house is a wreck (to me) so once I finish this post, off to "work" I go. I just wanted to update on Ivee's scans and reports from last week.  So, here are the details.

Eating  and Nutrition- For the month of April, Ivee was beginning to take in 4 to 6 ozs of thick soft foods by mouth. She has done well, not much coughing, but she has backed off since her allergies have kicked in this season. So, the last week or so, she has not been wanting to eat. We are trying to get her allergies and congestion cleared up so she can continue to progress! We will be getting Ivee a Modified Barium Swallow Study. It has been 2 years since Ivee’s last. She might be aspirating a bit with her eating. 

MRI - MRI revealed no sign of recurrent disease, so she's still a NERD! Yay!  She still has a large edema on the back of the head under incision site. It is still causing some compression on the spinal cord.  MRI also revealed what may be some inflammation on the spinal cord, but the radiologist did make note that the contrast dye used may have been more concentrated than last MRI. Dr. Merchant is impressed with her progression. He couldn't say enough how good she looks. 

Endocrinology – Hormone levels were good except for the nutrition hormone number. They Suggested a Growth Hormone Stem Test be done. Ivee’s bone scan in January did reveal Ivee had the bones of a three year old.

Audiology- Ivee's hearing hasn't changed for the worse or better in two years. Her hearing reveals damage in both ears, dropping off significantly after 2000 hertz. Due to the lose, she cannot hear the f,s, or th sounds and the blending and ending sounds of words. Suggestion is to have both ears fitted for hearing aids. This, perhaps, is the reason she has had difficulty in kindergarten with language. Emmett and I will observe her over the summer and make a decision on whether to move her forward to 1st grade.

PT, OT, and Hippotherapy- Both were impressed with her development. Had her fitted for new braces for her feet ankles. Hippotherapy has made all the difference with Ivee lately. She is taking some independent steps now, and she is more stable and she is stronger! I can't believe how much it has helped in just 6 months.

Eye clinic- We tested her eye sight yesterday. Significant Improvement in right eye after patching everyday for 3 to 4 hours for 3 months! NOW we will maintenance patch three days a week for 2 to 3 hours.

I know that all sounds very clinical, but it really is. These are some of the notes I shared with her doctor. She will return to Memphis in 12 weeks for another round of testing. 

MAY 8th my baby girl will be 6 years old, and do I feel EXTREMELY blessed!!!!! She can't wait for her party! And I love that I still have a little one to make cakes and parties for! 

The kids will be out of school soon, and I am ready for us all not to have to worry about school! My Brittney will be a Junior next year, Ethan will be a middle schooler, and Ivee will be back in elementary school, hopefully as a 1st grader! Everyone is growing up and moving on, whether momma likes it or not!