So what happened next?

Once a room was available at Arnold Palmer, the EVAC arrived to transport her from Bert Fish. Pete rode with her and I followed in the car. By the time we arrived a APH Paige was starting to wake up and ask for food. By now it was about 8:30pm and she hadn't eatten since the night before, so she was pretty hungry. We had to wait for the dr. to come in and okay her to eat...the longest 30 minutes ever. They asked us every question under the sun and finally let Paige eat. They planned on doing a MRI and EEG that night. It wasn't until 1am that she went in for her MRI, so she was going to have to wait till the morning for the EEG. Thankfully she slept through it and did not need sedation. If she needed to be sedated we would have needed to wait till the following day for the EEG; the sedation would have altered the results.

Tuesday morning a neurologist who was on call came in to discuss the result of the MRI. He explained that there was a significate change since her last one in 2007. The white matter of the brain had decreased and the Corpus Callosum was very thin. He was a little hesitant to discuss i detail what all of that meant and suggested we wait until the EEG results were in before we ask anymore question. That left us with a sickening feeling in our stomachs.
By 5pm they were finally able to come to the room and perform the EEG. Paige slept through the wires being taped to her head and the 20 minute reading. We weren't even able to arouse her for the strobe light. She was a tired little girl.

Around 8:30pm Paige's neurologist, Dr. Desai, was able to review all the report. He said he was pleased with what he saw on the EEG; there were a few spikes in her right frontal lobe and her sleep pattern was normal. The MRI results were what he expected for someone with the deficits that Paige has. She showed overall atrophy but nothing that he didn't expect to see. It's not good news but nothing life threatening. He started her on Lamictal, the same medication Bree is on, and is titraiting over 5 weeks to get her from 5mg to 25mg. He said as long as the evening continued to be uneventful and the doctor that does their rounds in the morning okay them, she could go home Wednesday.

That night was uneventful and by the time the doctor made her rounds in the morning, Paige was about 90% back to her old self. We were finally released around 12pm and told to follow up with our primary in a week and neuro in a couple of months.

So far, Paige has returned to normal and the medication is not causing any problems. We always knew the seizures would return, we just never knew when our to what extent. It's hard to go back to the way things were...I'm constantly watching for signs one is coming. Everytime I hear her cry I worry she's having another one. What happens if she has another and she's standing up and falls? I'm so scared to let her leave my sight. What's worst is that this could still happen to Bree. I won't let this rule our lives, but for the next few days, I know it will consume me. So here are a few pictures I took while we were at Arnold Palmer.

Paige still a little dopey from the meds.

Paige's room

Paige playing in her crib

Toys the hospital provides

Slept through the whole EEG

All the electrodes

After the EEG

Feeling better

All her IVs

What a trooper!

Poor Little Paigey - Day 1

This past few days have been pretty rough for the family...especially Paige. Just last week the neuro was saying how pleased he was to see the girls doing so well. Then Monday happened! The morning started off a little strangly for Paige. I picked her up out of her crib and brought her out to their play area, as I do every morning. As I turned around to get Bree I heard a loud thunk. I turned around and found Paige laying flat on her back...she just fell straight back from a sitting position. I went over to pick her up and notice she was very stiff and unresponsive. I flashed back to the day she fell from the back of the couch and went unconscious. It was a little different this time. She snapped out of it pretty quick, so I proceeded to get Bree.

For the next two hours Paige cried and cried. I decided to lie down on the couch with her and after a couple of minutes she vomitted all over herself and me. I put her in the tub...somewhere she loves to play, but she just sat there. She vomitted four more times before lunch. I couldn't explain it. It was nap time and she went down with no fuss. I knew she would be tired after such an exhausting morning. About an hour into her nap I heard some fussing, so I went in her room to check on her. I walked in on something I've been dreading for over two years...she was having a tonic-clonic seizure (some may call it a grand mal seizure). After 8 minutes I finally called 911 and when the paramedics arrived the rushed her straight to the EVAC where they decided to take her to the emergency room.

She continues to seize until she arrive at the ER, where they put an IV in her leg to give her a very large dose of Ativan. By the time I got there the seizure was under control. From the times I could account for I put the seizure at 27 minutes. I don't know how long she went for before I heard her cry, but she may have gone into status epilepticus, which can cause brain damage and even death. Paige slept the entire time we were in the ER and seem unaware of where she was or who was there. After 6 hours in the ER and several blood tests, x-ray, CT scan, and a spinal tap, infection was ruled out and she was able to be transferred to Arnold Palmer Hospital for Children in Orlando.

I will update you on our stay at Arnold Palmer in my next post. Here is the video I took of Paige during her seizure. It may be upsetting to some.

Neuro gives ok / Social Worker visits

The girls had their yearly visit with the neuro today. He was very pleased to see all the progress the girls have made and confirmed the diagnosis of Cerebral Palsy. We discussed weaning Bree off her meds. since her last seizure was a year and a half ago. He gave us a script of an EEG that we can do at anytime at Arnold Palmer Hospital. Once he had read the report and see that their is no seizure activity he will go over the process of weaning her off the Lamictal. He said Paige appeared to be at an 18 month old level, while Bree is at a 12 month old level. The worry of microcephaly is gone since their skull grew 3/4 of a millimeter...the grow stalled for some time last year. He said he would like to see them on a yearly basis from here on out. It was a great visit.
Later that afternoon a social worker from the school board came to the house to conduct a family/medical history meeting. He was a very nice gentleman and asked use more questions then I was prepared for. He asked us about everything from my pregnacy, their birth, hospitalizations, diagnoses, and overall health. He then asked about each girls strenghts and weakness, what kind of personalities they had, their best qualities, and any concerns. After a series of questions he mentioned that they show signs of Autism Spectrum Disorder. He said he's not a doctor and doesn't diagnose, but he sees many kids with this disorder and is seeing similar signs in the girls. This is something we need to look into more and talk to their Primary Care doctor. Now that that meeting has taken place we only have one more evaluation, Psycological test, and then they will combine all their reports and set up an IEP meeting. Then the girls will be ready to start school and get all the services they need. I can't believe their turning three soon!