Man....I am willing this month to be over with! It has been long, grueling and full of unexpected surprises filled with a tremendous amount of up and down emotions. Last week we had an appointment with genetics as well as Addy's MRI of the brain. I left the genetics appt. feeling very overwhelmed, nervous and full of emotion. Originally when I had made the appt. several of months ago, I thought that Dr. Bawle would see us and then say that we didn't have to return unless we felt it necessary. However, between then and now so much happened that I certainly didn't get that response. Dr. Bawle seemed very concerned about the seizure and change in speech. I of course asked the questions like, "what's the worst possible scenario we are looking at?" You don't even want to know the answer she gave me. So stupid of me for asking because now it's all I can think about. She had promised me that she would call after Addy's MRI which was the following day.
So Thursday, down to Children's Hospital we went, bright and early for the first appt. of the morning. Everyone was so nice. Once again they were unable to get an IV started (thankfully they only tried once, unlike Beaumont who tried about 8 times!) so they had to take her up to anesthesia where they put her under before starting the IV. Much easier! The MRI went well and Addy recovered quickly from the sedation.
The worst part was the anticipation of waiting for the results the next morning. I called the pediatrician as well to have them get the results, just in case genetics forgot to call me. I knew I couldn't go all weekend without knowing. So, after willing the phone to ring all day, I finally called genetics about 2:00. They immediately called me back and the news came across as somber. She said the MRI showed changes in the white matter of her brain on both sides. Okay, so what does that mean. Then she went on to say that at this age the brain is changing so much and myelination is rapidly occurring, so at this point it's difficult for us to tell anything until she has a follow up done in 6 months to compare it to. However, throughout the entire conversation she didn't sound extremely positive. Although she did mention that the report stated that the white matter was consistent for her age. Okay, so now what do I think?
Again, I willed the phone to ring as I waited for the pediatrician to call. By this time I had cried enough tears to fill a bathtub thinking the worst thoughts possible. The phone rang and I told her that I never wanted to talk to Addy's pediatrician so bad in my whole life. She seemed a little puzzled as to why I was so upset. I told her I had already spoken with the genetic doctor and I was scared. She read me the whole report over the phone and said that when she read it, she didn't draw any red flags. It clearly stated that the white matter was consistent with the patient's age and if clinical concerns remained, we could follow up in six months with another MRI. So, I felt much better after talking to her. I am still waiting to see the neurologist on April 7th and get his opinion. Hopefully I can leave that appt. feeling much better.
In happier news, Addy seems completely back to herself other than the speech. It has changed so much over the last several weeks that it is still very puzzling. This weekend we headed to Tyler and Ethan's pool party for their 2nd and 4th birthdays and Addy had a blast. Here are some pics to prove that she is feeling much better and seems to be back to her happy go lucky self. She also has a new big girl bedroom which she has been very excited about. I will post those pics soon.