Just when we thought our routine would get back on track someone brought something up to me on facebook that really altered my motherhood experience. I posted a video of Amor eating her first taste of sweet potatoes and a fellow DS mama mentioned that the way she was moving was concerning for symptoms of "IS"-Infantile Spasms. I of course had no idea what this was and I wanted to brush off what she said but the seed of doubt had already been planted. I know this mom was coming from a good place and she had experience with this herself so I picked her brain as to why she had commented that. I debated with her back and forth but I felt that Amor was fine and to give me peace of mind I would follow up with her doctor to make sure. During the appointment the doctor didn't see any reasons for concern but informed me that if there is any new tremor or seizure like activity that we should go to the hospital where they can do an EEG to see if she is in fact having seizures. I talked to some moms from my support group about what was going on and they all felt it would be best to get the EEG for peace of mind. I had planned on waiting for the doctor to get the referral to neurology so we could get her checked out but Amor started to display more concerning head movements and I felt very uneasy. We decided to take her to the Emergency Room and when we were seen the doctor heard our concerns on what led up to our visit and she without a shadow of a doubt said, “I am more than positive that she has Infantile spasms" I was frozen... I didn't believe the words coming from her mouth. I had it in my mind that we were going to show up and then they were going to tell us we were worrying for nothing. I feel like looking back on that moment many of the comments or opinions made were all centered around her diagnosis of down syndrome. We were admitted and stayed a couple days, the entire process was horrible. My poor baby was poked more times that I can count. I have never heard Amor scream and cry the way she did that night. It took the nurses 5 times just to get the IV line placed...each time my baby was looking into my eyes and I could see her wondering why we were doing this. During our stay at the hospital I was having flashbacks of her being in the NICU, it all felt so familiar. It was difficult to hold her because she had all the wires connected to her head to measure her brain wave activity. I felt uncomfortable with how the doctors were talking about her when they came in the morning before the EEG and spoke to one of the students. The doctor said " Have you ever worked with a Down's baby before?" What does she mean a down's baby? She is a baby first that happens to have down syndrome. It sucks because I really try not to be sensitive over verbage used in regards to her but it happens a lot and puts me completely out of the realm of my comfort zone. It makes me feel like medical professionals and people that don't experience down syndrome look at her as the diagnosis or an alien creature to be studied. It can be incredibly painful to deal with-especially for me since I tend to be on the reserved side because I don't want to offend people but being her mom has been forcing me to grow in that weakness and it is really really really hard for me. Chris and I felt so overwhelmed during our stay, I just couldn't believe our daughter was having seizures this entire time. I felt guilty that I took this long to take her to get the EEG. I felt the sadness I experienced in the NICU and fear of what the future would hold. In each new experience I see how God is completely guiding us on this journey, and it's so beautiful when I get to see the glimpses of his light shining through the darkest of moments to reassure us he is always with us. While we were doing the 24 hr EEG we were told we would have to move rooms to share with someone else because they were bringing someone in that was sick and obviously we don't want her to share a room with a contagious person. I of course was upset that we would now need to share a room but it wasn't in our control. When we walked into the room I saw the most beautiful blonde haired girl and she said to her dad, "Oh look that's a baby!" I smiled at her and her dad and looked at her beautiful almond shaped eyes that I know so well. This beautiful talking little girl was just like my little Amor. She had Down syndrome...I felt so comforted in that moment and thanked God for showing us that he is always with us. We talked with her parents for some time in the late hours of the night. It turned out that I was at the Dear Mom conference with this mom and it truly amazes me how knitted all of us are in this community. It was so beautiful to hear this little 4 year old girl talking to her parents and helped me to better envision our life in the next couple years. I can't wait for her to talk to us and to say mommy and daddy the way this little girl was throughout the night. The next day we got her results and it turned out that Amor was not having any seizures! The doctor said the tremor head movements were most likely something that she just picked up for fun. So $33,000 later Amor is in great health and has actually been making those movements less and less each day. This experience taught me so much about myself and about how God works within our lives each day to help us grow and appreciate the little things. I am so thankful that she is not having seizures and although we stayed there and the bill was big, at least we have the peace of mind now knowing she is okay! I have also learned to trust my mommy gut and do whatever I think is best for my baby-even if she ends up being totally fine in regards to whatever I was worrying about.
I'm busy working on my blog posts. Watch this space!