Improved EEG

We saw the neurologist today. There was good news - their EEG improved enough to begin weening the meds. He said starting Wednesday they could go down to 10units twice a day. He wants a repeat EEG with sedation after the girls come off their meds completely. The Opthomologist told us that their eyes were healthy and that their vision problems were neurological. They don't focus or track things infront of them and their eyes will sometime roll to the back of their head. The neuro. called it Cortical Visual Impairment (CVI). He said with time their vision could improve but until then we will not know how well they'll see; if at all. The girls have also become very spastic (were the muscles are very stiff and their bodies become rigid and flexed in a backward arch). We're hoping it goes away with the discontinue of the meds. If not Cerebral Palsy may be our next issue. We won't think about that now. Wednesday we see the neurosurgeon to discuss Paige's surgery and the bands thar the girls will have to wear to mold their heads due to the plagiocephaly (flattening of the back of the skull common in premmie -NICU- babies). Paige and Bree have become so swollen froms the meds but their chubby cheeks are so cute. The picture is Paige - all cheeks!

Seizure Free!!!

The girls have been seizure free for a week and a half now. Their irritability is really showing. Their fussy most of the day and don't sleep well at night. Their eating every 2 1/2 to 3 hours now. Our Home Health nurse coming twice a week now and I take the girls once a week to Bert Fish Hosptial for blood work. Most of my free time has been spent calling all their doctors to make follow-up appointments and repeat testing. I've also started the process of getting the girls Early Intervention with Early Steps. They will have Physical Therapy (PT), Occupational Therapy (OT), Speech Therapy (ST), and a developmental phychologist. We meet with all of them on August 9. The girls are having their third EEG on the 18 at Arnold Palmer. We see Dr. Desai (neurologist) on the 23 and Dr. Trumble (neurosurgeon) on the 25. All of their doctors are in Orlando, 1 1/2 hours away, so most of our time is spent driving back and forth. We're hoping the EEG improves enough so they can begin to ween off the meds.

Happy 4th of July!

The girls have been in the hospital for 8 days now. On the 27th the girls started their ACTH injections along with Prevacid for their acid reflux and Nystatin for the thrush they developed in their mouth. On the 28th they both were sedated for their MRI. They were pretty groggy for the rest of the day but their appetite really increased. Later that night Dr. Desai ( neurologist) told us the results of the MRI. The girls have what is called Periventricular Leukomalaysia (deterioration or death of the white matter of the brain. They also have thinning of Corpus Callosum ( the tissue that connects both lobes of the brain). Neither one were significant enough for immediate concern so they will have a repeat MRI in a few months to see if there's any change. On the 29th their ACTH was upped to 20units twice a day. Over the weekend their blood pressure was closely monitor because it was running high due to the meds. On Monday the 2nd they received a second EEG which showed improvement during their awake period with some seizure activity during sleep. Yesterday the found murmurs in both the girls so the doctors did an ECHO and EKG. They found that Paige Left Ventrical Hypertrophy (thickening of the wall of her left ventrical of the heart. Bree had an Arrythmia so both will have a follow-up ECHO and EKG in a month. The girls haven't had a seizure in a few days now; hopefully a sign of things to come.