I am starting this blog in hopes that other new mothers of children with Down Syndrome will have one more perspective. I am new to everything involved in the realm of Down Syndrome and I have found that some of the most worthwhile information is the experiences and accounts of other families so here goes...
Our family is made up of myself, my husband, Howie and our sons, Everett, Finnleyand August. Everett is four years old and is honing his skills as THE big brother. Finnley is our very feisty and fun two year old who always keeps us laughing. Their little brother August was born in May 2009, six weeks early and he is enjoying the company of his brothers and our dog, Oscar immensely! August was diagnosed with Down Syndrome and an ASD five days after birth.
August had a short stay in the hospital after birth and did very well catching up on his weight. August's diagnosis was a shock. Each time they gave us more correlating evidence (the ASD, the features and then ultimately the blood test), I would hope that perhaps they were wrong. Neither my husband nor myself had anyone with developmental disabilities in our family and it seemed like we were plunging into a very scary and unknown world. I cried a lot the first two weeks, but then decided that I needed to learn more about both the similarities and differences between raising August and our other boys.
I read "Roadmap to Holland" and it was a very important part of my "recovery" from the initial sadness that I felt. Jennifer is so honest and that was comforting. I felt less guilty about my sadness and could then dive into the information, which I knew was going to be the most productive thing to do.
After the initial shock of his early birth, my first c-section, his diagnosis of DS and an ASD, our life seemed to level out a bit and we wondered if August was going to hit any of the health bumps in the road. In December, after a bit of internet research, I determined that he was having infantile spasms and scheduled an EEG to check for hypsarrhythmia (pattern indicative of infantile spasms) at Johns Hopkins. The EEG showed the pattern and he was put on steroids to correct it. He stopped having the spasms two days into the treatment, but we are still waiting a week more to take another EEG so that he can be taken off the steroids. Infantile spasms are scary because the brain wave pattern prevents them from taking in new information so they stop interracting and making new strides. If it is not caught early, it can further delay development. Here is a video of the spasms that I posted to youtube for others to see what they look like:
However, August has been smiling again and he is much closer to his old self. The steroids make him restless so nobody is getting very good sleep so I know his fatigue is getting in the way of some progress. Also associated with the steroid, is a suppressed immune system, which has lead to strep throat and most recently RSV.
Yesterday he was sent to Johns Hopkins ER to be checked for RSV and he does have it, but was not admitted to the hospital. The poor little guy is on so many medicines and still is not feeling the best. I will be so happy when he is feeling good again!
It has been a rollercoaster and those are just the health issues, but August has changed our lives forever. My husband and I always talk about how fortunate we are to have Everett and Finnley's health and, in comparison to some children with DS, how lucky we are that these are the only issues that Auigust has encountered. August's arrival has made us take a step back and appreciate all three of our boys as well as each other so much more.
I will continue posting other vignettes from our life, but there is a start! Thanks for reading...
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