I couldn't resist putting another cute picture of Kean (pronounced KEEN-- rhymes with Dean) on the website. This one is with Grammy (before the Unicorn IV was put in his head). Sorry, it's kind of dark. We didn't use a flash.
Another good day for Kean and I in NICU. We had our second male nurse-- nice guy-- but not as "demonstrative" as Dan was yesterday. Kean latched on for eight minutes today-- a new record. He's making progress each day. I'm so proud of him. I'm so hoping to get him home sooner rather than later. I forgot to mention that I met with the hospital's genetic counselor yesterday. She went over the Karotype testing results with me-- he is considered in the general Down Syndrome population. There are some variations of Down's-- but he does not fit into those categories. As I mentioned in a previous post, we won't be able to tell where he fits on the spectrum (how severe or how functioning) until we see him grow and see how he reaches his milestones. However, after seeing him do so well with the latching on-- I think he's going to be a rock star. Otherwise, the meeting with the Geneticist was quite depressing. She warned me that 30 to 40% of Down children get Leukemia in the first five years of life. They also have a high propensity for Diabetes, Alzheimer's, Gastro problems, hearing problems, eye problems, dental problems and on and on and on. Of course, after they've scared you to death-- they say they are just trying to educate you and make you aware of what "could" happen in the future. Byron has a better take on it-- he points out-- look at all they worried would be wrong with him when I was in the hospital. Until something happens and we have to deal with it-- it's all just static! Why they overload us parents with all this info in the beginning when we are just trying to survive the NICU experience and heal from giving birth-- is beyond me. I think I'll be writing a book about all this someday...
Stacy Hoffman watched my girls all afternoon and cleaned my house!!!!! I hear Sue Pugh helped and is the one who left the most beautiful bouquet of flowers on my island. I don't know where to begin to thank all of you for all of the acts of kindness. My thank you list is rivaling Mt. Everest.
4 comments:
Lonnie,
So happy to read that you and Byron are not letting all the information burden and overload you... to the point of despair. Kean is so blessed to have such loving parents. You are all in my prayers.... and I hope it won't be long before you can all go home together... and be a family again!
Love, Lin Sue
Lonnie, When Maya was born and they told me 30mins after she was delivered she had sever skeletal dysplasia I was lost for words because I was so unprepared for this. After meeting with the Genesis in the hospital I got so much information about all the disablities she would or could have I was overwhelmed! After several tests... so far the results are very mild. Remember what Byron has said he has some real truth to this! I know the doctors know the statistics but remember they are statistics! Maya will have many challenges but so far she is doing everything on "Mayas" time and the genetics are amazed.
Lonnie,
You may not know me, but I am a good friend and former roommate of Stacy's, Keisa Ridgway. Sha called me last week to let me know of your situation as we too had a beautiful, amazing daughter last year with DS. I know that our situations are very different, but please try not to let the NICU life get you too overwhelmed. I know it is so hard, but they are taking very good care of him and giving him all that he needs right now. How excited I am for you to welcome this little gift into your family and home. I could feel my little Eden's sweet spirit whenever I was with her and I know that our little children with DS are truly gifts. How I wish we could have brought Eden home to have that spirit in our house. I know it's so much to digest and it's not easy at first, I know, but Kean will be so cherished and loved in a wonderful family. I think of you and pray for you and your family. When you are ready, I too have many DS resources that I would love to pass on to you.
Love, Keisa
Hmmm, didn't I mention writing a book a while back?
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