Life was starting to settle as we finally closed on the new house and work is in full progress and will hopefully be moved in within a few weeks.  Taygen has been doing well and we have figured out her prime times for therapy and are starting to get into a decent routine and life was settling into a new normal until this past week. 

A few weeks ago When rocking Tay to sleep she would sometimes be woken from what appeared to be a muscle spasm in her arm and legs.  These spasms would would only last a second or two but would repeat every 5-10 seconds for around a minutes then she would settle and fall back asleep.  She wouldn't cry or appear uncomfortable so we didn't think too much about them.  At first they would appear every few days and randomly, then in the last week we started to notice them happening every day and consistent with sleeping or waking and lasting longer (2-3 minutes).  I caught a few spasms on video and emailed them to her neurologist.  I sent the video on Friday and we were then scheduled for an EEG for Monday in Burlington to test for seizure.   While being monitored Taygen had 2 spasms and the doctor was confident with diagnosing her with having a type of seizure called Infantile Spasms.

Infantile Spasms are rare and consist of a cluster of seizures.  If not caught early and treated they may stop or regress a child's development.  It is believed that Taygen's spasms are related to the abnormalities in her brain which put her at a 90% chance of having seizures, although we had hopes of being in the 10 percent of not ever seeing them.  Infantile spasms usually stop by age 5 but she will still be at risk of other types of seizures.  Unrtil recently I always assumed a seizure included loss of consciousness along with convulsions, but I have recently learned there are at least 6 different forms of seizure.

We were admitted onto the pediatric floor of Fletcher Allen Hospital in Burlington again on Thursday to begin treatments.  Taygen will need to get 2 injections a day of a medication called adrenocorticotropic hormone (ACTH).  It isn't clear on why or how ACTH works to treat infantile spasms but it is the most common medication used with the greatest outcome.  Taygen will be closely monitored for high glucose and blood pressure level for the next 5 weeks while on the medication.  

We are now home from the hospital where we learned how to give the injects.  We will have a home nurse come in 2-3 times a week to check on Tay and will have weekly follow- ups with the doctors. We will return to Burlington for a follow-up EEG after 5 weeks with hopes that all seizures are gone and no more treatment is needed. 

So far Tay have been tolerating the medication well and although the spasms have not disappeared they are happening less frequently.  Please pray that the medications works as this poor little girl has already been through so much.

On this months hospital tour schedule we will also be traveling to Buffalo for a follow- up CT scan at Roswell on Monday the 14th and we hope to be celebrating 4 years remission from Hodgkin's Lymphoma!

Don't waste your time and energy asking Why something happens, spend it praying for the strength to get through it!