heart wrenching

The heart break just begins at diagnosis. I, of all places, received the call with my daughter's diagnosis of PKS while I was shopping for spring clothes in Wal-Mart, a day I had taken to spend time with my other kiddos. I was a blubbering mess and while I should have just put everything down, I instead proceeded to check out thinking I could keep myself together for 10 minutes....but no, I lost it on the check out lady...she thankfully didn't think of me as crazy (even tho I told her I was 😞) but gave me a much needed hug instead. Seems like looking back on it, it would have been a better conversation for the doc and family to have in person, but oh well.


What I've not expected is the hardships that came once Savannah was home. I have spent countless hours in the social security office, dept of community based service office, health dept, etc...trying to get help for her. We have also looked into waiver programs only to be told she will be put on a waiting list of 900 plus kids. When she was initially at home, we had a lot of help from govt...but through recent surveys we have been told that our income is too great for anymore assistance. So, here's to our fantastic government and the next (at least) 2 surgeries that will be paid for somewhat by employer insurance and the rest out of pocket...not to mention the countless doctor visits, medical equipment, prescriptions, therapy and the list goes on.


I'm not writing this for pity...just to give an insight to the not so pretty aspects of life with a special needs child. And to vent before I explode. Is it not enough that she's disabled...that's heartache enough for us...but all the other should be unnecessary struggles that this govt places on us makes it even harder. I'm convinced that one day this will get easier...God will take care of us as He is already. We are a blessed family...blessed with our family and friends who love Savannah as their own and for that I'm thankful.


 Savannah has changed our lives and I Iove her for it. She has brought so much of my attention to the world that is very much ignored out there...people struggling emotionally, spiritually, financially, physically while some just sit back and ignore. I was guilty of all that and then some before Savannah. Even as a therapist I had never empathized with my patients the way I do now. My life is forever changed and will never go back to the way it once was, but for that I am thankful. Savannah has made me a much better and stronger person.

6 Months

Savannah is up to 14 lbs, 15 oz. Her 4 month shots were a little rougher on her...slight fever and very lethargic for a while. She is growing great on her growth curve. She is also getting her first tooth, but not showing much discomfort with it. And she has found her face...keeps taking her hand to her mouth or eyes.


Updates on Doc Appts:
-Neuro doesn't feel like what we are describing is seizure activity, but with her brain formation and syndrome setting her at a greater risk for seizures, she will have a 24 hr EEG coming up. 
-Her pediatric surgeon discussed her next surgery to fix her imperforate anus/fistula. She would like to get it done before she's a year old. A new fact we discovered is that if there were to be complications or to initially go about the surgery the safer way, she would end up with a temporary colostomy. 😞
We are, however, getting a second opinion from the very awesome surgeon that did Savannah's emergency surgery and central line...for various reasons. We see her Oct. 7th.
-We go to UK clinic for her hearing in Oct. to hopefully get the definitive answer on that.
-Savannah started physical therapy this past week...they will be coming in twice a month initially. She loves her therapist! Speech comes in as well once a month to work on oral motor exercises to hopefully prepare her for bottles later down the road.

making progress

Savannah rolled onto her belly today!




-Neonatal docs tried to up her feeds to 36 mL per hour every 20 hrs so she could have a break...in order to do her therapy on a not so full stomach or should we say intestines. Well, missy wasn't having it so docs had to go back to her regular 30 mL per hour every 24 hrs. She doesn't take change very well!
-An accurate hearing test hasn't been completed with her keeping fluid on her ears so we are being sent to specialists at UK in October.
-She will have physical therapy twice a month and speech once a month with First Steps coming soon.
-She battled her first cold like a champ! Big brother brought home a cold which lasted a couple days for him & Alayna, but lasted 2 wks for Savannah.