Wednesday, October 29, 2014

Halloween and Visual Impairment...

Dear Savannah,

A lot of nights my mind wonders into a worrisome place. My worries are always more intense when you are not feeling well and we have had a very busy past eight weeks filled with appointments. Might I add, all appointments have led to great results. Spinal fluid is normal, brain imaging is your normal, no signs of seizure activity, and your hernia just needs to be watched, no surgery needed at this point. Tonight, you seem to be feeling better, but now it is in your chest.

Tonight, I feel a little down thinking about Halloween which is only two days away Tomorrow we have your Halloween party. Two years ago, I watched a happy toddler on her daddy's shoulders and I started to cry. I want you to experience Halloween the way I did as a child. Visual impairments are tough. We want to give you every opportunity to experience all things we know and love. I guess if I am being honest, I want you to see all the costumes, well, maybe not all, and I want you to truly get excited. Maybe in a few years, you will have a better understanding.
Salem Parade

Savannahbug and Mommy

Ladybug from head to toes:)

 I have been thinking about the day we found out you were legally blind. My heart sank knowing the challenges we would face as a family. However, even though we have never made eye contact, our hearts are fully connected. I love you more than anything on this planet, and I know you love me too. You have always been so excited by my voice or my touch, or my crazy songs I sing. Lately, you have been comforted in my arms and extra snugly. There is no better feeling than to have your body snuggled against mine. You are my little forever baby.

It took me a week or so to go through sad emotions. It is not that I never get sad now, I have just learned to embrace every single part of what makes you Savannah. You are my daughter and there will never be a disability in the world that will stop me from loving you or giving you everything you need. I just make appropriate adaptations for you. It is the most challenging and rewarding job and I can't count the times I praise you daily for being the best daughter ever. You truly are and I am so incredibly lucky. I love you pumpkin!!
A selfie from the pumpkin patch and the world's cutest pumpkin

Love, Mommy

Wednesday, October 1, 2014

Welcoming October...

Dear Savannah,

I'll admit, I love October. However, this past September was filled with appointments and I am so glad it is over. We had eight appointments, some routine follow-up, some new.

This past week was really tough. You were sedated for the first time since your surgery in June of 2011. You had full brain imaging and a lumbar puncture. It was awful and longer than expected. It was supposed to last for about 90 minutes and lasted for about 135 minutes. You developed stridor, again, so the time apart from me was about four hours. It was rough. Not to mention you have your mommies poor veins and it took them about six attempts before an IV was placed. Your poor fragile but resilient  body has more bruises than I would ever like to see. I say all this, but, I am truly thankful that your results are steady and the glucose in you spinal fluid is normal.

Next week, we will be going in for a 24 hour EEG because we are concerned that you might be having seizures. You have these staring spells followed by some spastic movements and then you cry. It's very predictable once this behavior starts. I pray that this is not the case. Mid October, we meet with a pediatric surgeon to discuss your hernia.

On a lighter note, we had your Hydrocephalus walk in September and that was a lot of fun. Our team grew with more family members. Lydia, Kelli, Daddy, and I have been walking for three years in a row. We continue to support the hydrocephalus association and we raised over $2000.
Mommy's little girl!!

Daddy's Little girl

Team Savannah Smiles


Kelli and Lydia

We also went to a pumpkin patch with Hannah over the weekend. I sure love her mommy. I can relate to her on so many levels and you girls make a very cute duo, Hannah and Savannah.
Hi!!

Hannah and Savannah

Savannah, you are so brave and so inspiring to me. I am so blessed to be your momma.

Love, Mommy