What a GREAT Day!

Callista's Second Annual Benefit was a huge success! We had a great turn out and raised an awesome amount of funds. We've got two walks/runs we will be doing soon so our team is set. Plus, don't forget to check out Socks 4 Surgery, Gracie's Gowns, and Team Iron Aiden on facebook, we will be supporting these organizations by sponsoring child gifts. We also will start the planning stages of home renovations for Callista. Since our home is two story, it's not conducive to her future wheelchair. An additional bathroom with a wheelchair accessible shower and sink as well as remodeling the room attached to the garage are in the works! Our goal is to make our home work for our daughter and to encourage her independence as much as possible. Anything she can do for herself is what we strive for!

I cannot thank our supporters enough for all of the hard work that went into making the benefit a success. Those who donated items, money, time, and prayers were an integral part of why this fundraiser worked out so well! Everyone who came said the food was delicious and they had a lot of fun. There were so many auction items and fantastic prizes to give away. We could not have asked for a better day. I hope to post pictures from our "photo booth" to her facebook group soon.

Thursday is a neurosurgery check up to make sure she is healing properly and to get cleared for therapy. There was a surprise call today from feeding clinic and they had a cancellation so we will be seeing them on Thursday also!

Home Sweet Home

It is truly a compliment to be trusted by your child's doctors. It's nice to hear from professionals that you're doing a great job and they consider you "educated" parents. We finally got to come home today after spending a week in the hospital. Even though Callie was still throwing up, they had such faith in me as a parent and caregiver that they let me take her home anyway. I am so glad we did because she has been doing great. Maybe she just missed her special chair! Me, I just missed my shower, bed, couch, TV, dog, couch, etc. Okay, I think I missed a lot more than her... Mostly I think we are both looking forward to a night of uninterrupted sleep.

We still have to work on getting her feeds back to baseline but otherwise she has made a super recovery. I was worried about her neck strength after such an invasive procedure but she's already moving her head and trying to hold it up. She's not allowed to do anything strenuous until we have our follow up appointment next week, but I'm so proud of her and how resilient she is. These kiddos go through so much and come out smiling, it's just amazing.

Before leaving today, we had "the talk" with her neuro team about transfer of care. We've made a decision and I pray it's the right one. After next week, we will be under a new neurosurgeon and the thought makes me quite nervous. She will have another sedated MRI in 3-6 months to check on the status of her syrinx. Our current doctor thinks this should take care of the issue but if it doesn't, we will come up with the next course of action which could be tethered cord release or shunting her spine (no thanks to either of these, please!)

I know it's not a very interesting blog post, but I wanted to update everyone on how she was doing. There wasn't enough sleep in the world for my brain to work any harder.

Recovering (all of us!)

We are finally headed down the long road of recovery. Callista from her illness of course, but her daddy and I from sleeping on a hospital couch, cafeteria food, and little to no rest. They released her Monday (20 minutes after the snow started, thanks again) with oxygen for at night if she drops her saturation. They didn't send us home with a weaning plan, but thank goodness for our wonderful pediatrician. We couldn't ask for anyone better to be on her side! He gave us the go ahead to wean, suggested we stop the antibiotics, and said that if he didn't know what Callie had just been through he never would have guessed because she looked so good. Now if we could just get our one year wellness visit it! Apparently you are required to be WELL for that.

It seems as though our little one has started growing and developing like a weed just within the last two weeks. She is now expanding her babbling sounds and I swear we are thiiiiiiiiiis close to saying mama. She talks non stop at this point and is becoming such a big girl! Her head control is developing nicely and she is starting to get some strength in her core. She has started reaching for things and touching things. Her whole body movements have increased by a lot as well. Miss Callista has had a long break from therapy after being sick, but next week she is back to working her little baby butt off. Her grandpa made her a therapy bench so she will not get lazy at home either!