Wednesday, September 14, 2011

A Gut Feeling

Early Childhood Intervention System
Most of us have heard the phrase, "I have a gut feeling," and usually we follow that feeling or trust that our gut is accurate. I always believed she was developmentally on track and at worst was just a little, teeny, tiny bit slower than other babies her age. Well, my "gut feeling" started kicking in around four months or so, but I thought it was just "New Mommy Neurosis" and I convinced myself that Rae was just growing at her own pace. At her five month check up with Dr. A. he had me look at the developmental wheel (similar to the adjacent image) to help me identify what she was doing. I hated that little wheel! The minute it was in my hand my mind would just blank and I couldn't seem to remember any physical milestones Rae was making. Finally listening to my gut, I told Dr. A. that I had concerns and he said he did too, but not to be alarmed. He referred us to Neurology at Nemours with comforting words about not fretting. I understood that he didn't want me to needlessly worry about the appointment and that he didn't want to say anything about his own suspicions until a specialist had a chance to exam Rae. My logical mind understood and accepted emotional mind had other plans. After our check-up I sat in my car and cried. I raged about how I should have listened to my gut sooner and not dismissed my initial concerns as "New Mommy Neurosis!" I didn't want anything to be wrong with our daughter.

The call from Neurology didn't offer any quick answers for us since we had to wait almost 10 weeks for our initial visit! Well, it was completely out of my control, not that it ever was in my control, and we just had to wait. Due to work constraints my husband wasn't able to make it to her first appointment. So, a dear friend, Jae, went with me to offer support and be a second set of ears. Lord knows I needed them! Personally I feel it is best to have a second set of ears present to hear what your brain attempts to tune out. Jae even took notes! On to the appointment...

The Nurse Practitioner came into the exam room first and ran through the preliminary tests: reflexes, head/neck stability, and the "superman" to see if Rae held out her arms in preparation for a fall (there were more, but I don't recall them all). Once she completed her exam we waited for Dr. H. to come in and offer his assessment after another less extensive exam. He professional opinion...Benign Congenital Hypotonia (layman's terms: Harmless, Present at Birth, Low Muscle Tone).  Which according to Dr. H. and online resources is a diagnosis that is giving when there may not be any real explanation for the cause. Dr. H. also explained that there could be HUNDREDS of causes for Rae's hypotonia and it would require a series of tests (Blood Work, MRI's, CT Scans) to rule OUT the looonnnngggg list of suspects. He also believed it would be something she would outgrow. This information made me hopeful.

Our first step in ruling out possible causes was having blood work done. This was the least invasive in my mind and was the easiest decision. However, it was NOT the easiest to accomplish. I had to hold my helpless daughter in my lap while extended her tiny arm out for a nurse to poke it with a needle. I never heard my baby cry so loudly. It tore at my heart. To make matter worse they had to poke both of her arms! It was such a terrible experience for both of us, but we managed to "stick it" out and after several "I'm sorry's," some tears, and lots of cuddling we were ok again.

The second step, the MRI, was optional at the moment. Since Rae was only 5 and a half months we decided to wait until she was 7 months before making the decision to have an MRI done. We based this decision on what is considered "normal" development and by the END of 7 months Rae should be able to roll over. We really wanted to give her a chance to meet the milestone in her own time and I attempted to help her the best I knew helping her roll over. It wasn't met with much enthusiasm from our little girl. We were also concerned about using anesthesia on her at such a young age...especially if it wasn't necessary. It was the decision my husband and I felt best about at the time and there were some that were very critical of our choice (more on that later).

In the end Rae's blood work came back normal and that offered some additional comfort to us and we continued working with her at home as best as we could. We hoped it would be enough and that by the end of 7 months she would be rolling over with wild & reckless abandon. A Mother can dream right???

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