EEG results.....Now to Watch, Wait, and See.....

Maelee was seen by the neurologist on April 13th. We were so worried about this appointment but also knew we wouldn't leave with any answers that day. The neurologist had the same concerns regarding her muscle tone as us and wanted to do a follow up appointment after a few months of therapy to see how she was progressing. He threw out some things that it could be...of course making me a nervous wreck even more. I knew that she may be diagnosed with something but I just didn't want to hear it come out of his mouth, not now or ever.
We were scheduled for an EEG on April 23rd. Maelee was set and ready to go. I knew that it was going to be a long day but I never could have imagined how long this day would be. Maelee did not handle being hooked up to the probes well at all- she cried so hard we had to stop and make sure she could breath. It was so sad and broke my heart. I felt terrible. Were we doing something wrong? Should we stop? Is this necessary? Lee reminded me that her doctor wanted to rule out seizures or abnormal brain activity, he wanted to make sure nothing was going on right now, and that something was not right since Maelee can not put her feet down. I knew in my heart we were doing it for the right reason but it didn't change that my heart was breaking over and over. And she just looked so upset.....

But once our sweet peanut was hooked up she was happy as can be!! We fed her a bottle, played with her, rocked her, then put her in the stroller and she slept for the next 45 minutes! The test was over! Now to wait.
We had to wait a week for the results.....a long week!! But it was worth the wait! On Friday, April 27th we got the best phone call, her EEG came back NORMAL!!! Wonderful news! But now we didn't know what to do......or what was next.....

Maelee will continue doing PT once a week. She is making great strides and we can't wait to see her progress even more. Over the next few weeks her therapist will watch her legs and decide when the right time to have her fitted for little braces for her feet/legs to help her improve even more.
Maelee began OT (occupational therapy) on Monday April 30th! We were so excited to be able to begin this part of her journey as well! Maelee has some work to do on her fine motor skills that her neurologist was concerned about. She has never been able to shake a rattle prior to OT- until yesterday! She shook it in the right hand for me and I cried! She still can't do things equally with her left hand, but we understand this and are working to get her on the right path. Maelee also has some sensory sensitivity.  This may sound scary or confusing. But what it means is some noises, certain things that touch her, or too much activity can cause overstimulation or her to have what most would call a "melt down". But for Maelee it's a "melt down" that we can't stop or control. She has been really good with trying new things. I have worked really hard at laying out all types of fabrics for her to touch, making all different noises, and taking her places with different things going on....but I know when enough is enough. I can look at Maelee and see when she is on the verge of too much and am thankful that I know her so well. She has a harder time with touching on her left side or on her legs, but we are trying. OT is working with her on swinging, something most babies find soothing...but Maelee would rather jump! :) She is our little frog!

We know that in a few months we may not have an answer still but we hope and pray that wonderful progress continues to be made. We know that eventually there might be a diagnosis, and we have been made fully aware of what those options will more than likely be. Maelee may have a label for the rest of her life....but that label will not define her. She will define herself. She is a fighter, survivor, miracle, and a true gift from God! :)