Friday, August 26, 2011

Wednesday, August 17, 2011

the beginning-

**the following post was started on Camilla's birthday and I've just now had time to finish it**her birthdays are always tough days for me**it's so easy to remember how happy things were in the beginning

I remember the day so vividly - August 14th, 2005 - after 14 hours of labor and a normal, happy, healthy pregnancy and birth my little girl was finally in my arms. At 6 lbs 10 oz she was a tiny bundle of joy and I just couldn't hold or look at her enough. Camilla was a very good baby. We had no major issues with sleeping, pooping or feeding and she was just one happy little girl who was healthy and hitting all developmental milestones - until 6 months old. Looking back now those first six months hold some of the most precious memories and best times of my life.

When she was almost 5 months old she developed an ear infection - no biggie. We saw her pediatrician and he put her on antibiotics. The ear infection rocked on for several weeks but then at her six-month check up her ears were fine. We got a clean report and our shots and went on our merry way. Within the week Camilla began making these 'jerking' movements that would come in clusters. During the clusters her arms would both 'jerk' straight from her sides and her head would 'bob' slightly. Within the first couple of days of starting there were 8-10 'jerks' in each cluster and she was having about 10-12 clusters per day. At first we thought the jerks might be 'ear pain' (maybe the infection was back) because after each one she would put her hands on her face or ears and she would cry as if in pain. After a call to the ped he gave us some numbing ear drops and told us to use them when the first jerk began. After a couple of days we could tell the drops were providing no relief and the jerks were increasing so back to the ped we go - that was April 1st. After describing more details of the clusters and including that the drops were not helping our doc became immediately concerned. I will never forget the look on his face the first time he said the words 'possible seizures.' He recommended we go for an EEG - we could wait a couple of weeks to get into Children's or we could be in with a local pediatric neurologist the next day. We met with Dr. Syed the next morning who, after describing her symptoms, got on the phone to DCH and went ballistic on them when they could not get her into an EEG that day - that was April 2nd. So one more day to wait on the test. The morning of April 3rd we were at DCH for a 6 hr EEG - what a nightmare it was hooking her up for the first time ever - it's the only time we've had to use a papoose board. So 6 hrs later we are getting ready to head home - it's about 3:00 at this point - we assume we'll get a call tomorrow with the results and we are planning where to grab a bite before we make the trip home. As we are about to leave a nurse comes in and says that per Dr Syed's request the test results have already been emailed to him, he has reviewed them and he wants to see us in his office immediately. We drive a very silent drive across town to his office at the Northport DCH and are greeted at the door to his now closed office by a nurse. She takes us straight to a room where Dr. Syed is waiting on us.

Of course we are petrified by now - we knew it had to be bad - no one gets this type of treatment for things that are going to be ok - we had not spoken a word to each other or to Camilla for that matter - I sat shaking in the chair with Camilla on my lap while Brandon was in the chair to my right - and then came those words - "your daughter has Infantile Spasms, she will probably never walk or talk but the good news is that it's not fatal" - from there I just remember Brandon catching Camilla as I was close to collapsing on to the floor - I'm sure there were questions that followed and I do remember him taking us back to his office to let us look at the EEG and the 'tell-tale' hypsarythmia but I mainly just remember him leading us down a back stairwell to our car and giving us instructions on what to do once we got back to DCH to admit Camilla indefinetly.

I remember that drive back to DCH, one of those memories that haunts your dreams. It was so quiet except for tears and one cluster of seizures that Camilla had on the way - almost like they were rubbing it in. I'll never forget the memory of feeling like we had left his office with a different child than we took in there. 3 days - that's all it took to turn our lives upside down. EVERYTHING was FINE, EVERYTHING was NORMAL - until it wasn't - 3 days.

Below are some pics taken during the first six months of Camilla's life...