A Very Medically Complex Little Girl

Dear Savannah,

 I have spent the evening preparing for our first school transition meeting for you. In preparation, all of your therapists expressed their thoughts and I expressed mine. I know school will be good for you, but I am having some serious separation anxiety. It makes me sad to know that in a few more months, you will no longer be my full-time sidekick or in my full time care, as you will be going to school. It is a feeling of loss of control and it gives me an uneasy feeling. I love my job as your mommy, it's the best job in the world.

Tonight, I put together a transition binder. This hot pink binder contains the most updated medical reports along with all your doctors, addresses, and contact information. I always knew you were medically complex, but twelve doctors and specialists follow you at this point. This list includes your pediatrician, neurologist, neurosurgeon, pedi gi, genetics, communication specialist, two ophthalmologists and a low vision clinic specialist, orthopedics, a PT for aqua therapy, and our local clinic where you meets with a team for out-patient rehab. Wow!! You really are a very medically complex little girl. I think the only one we really don't need, or at least at this point is audiology because you passed a hearing test last spring, as I knew you would. They wanted to sedate you and I promised the woman I would wake you up very early so you would sleep through the test, no sedation involved. We walked away from the appointment and I was very pleased. You are my little rock star!!

She looks like such a big girl here!!

I feel thankful that you are  thriving and I really don't have to worry about your health constantly, even with all your doctors.  In the back of my mind, I constantly worry about your shunt malfunctioning but we have been very lucky thus far (knock on wood). Shortly after you turned one, you tested positive for pertussis which was extremely scary. It was my scariest time with you since we left the nicu, six weeks after your birth. You had such a hard time breathing and you were turning a shade of blue around your mouth. Actually, it reminded me so much of the first seven months of your life. You would aspirate while feeding. Many bottle feedings were tough and even harder was nursing. I was never one to pass you around while feeding. I preferred to keep you safe. Several times, I felt as if I would have to call 911, but never once did it go that far. Many times, I felt as if you would end up with pneumonia but again, we were lucky. Crazy to think about this now because eating is your strength. You might night be able to self-feed, but you eat everything. You do an awesome job chewing and even drink a bit from an open cup. Your chewing is adorable, smacking and all. You are the only one who doesn't get in trouble for smacking or kicking your feet up on the table. There will be a time when this is no longer appropriate, but for now, I think it is really cute. You also eats like a horse! You often eat as much or more than me at dinner. Its amazing you only weigh 22lbs. Where do you put it? You are very petite and perfect.

Tomorrow is a big day, a scary day for this mommy. I plan to address this transition process over the next few months. Pretty soon, you will be turning three. So much change to come our way. I am so not ready to let go... I love you sweet girl!!


Love,  Mommy