Wednesday, May 17, 2006

Dad's turn blogging

Hello everyone, this is dad taking a turn updating the blog. I think people may notice quickly in the writing style it is an engineer writing.

So since the last update there continue to be up’s and down’s. Adam and Eleanor went to their “4 month” developmental clinic evaluation. Both were evaluated to be in the “normal” range – but – it was noted that Eleanor’s legs were stiffer than normal. This is one of the early warning signs for cerebral palsy. They are not able to make a diagnosis, or give a prognosis yet. So we are stuck in limbo a bit. Since there is not an actual diagnosis – we can not get a referral for a second opinion, nor get referred to a physical therapist (PT). Feeling Eleanor’s leg, and her flexibility versus Adam’s, it is pretty clear there is a significant difference. Michelle has been spending a lot of time working with Eleanor and her flexibility. If she has CP, there is no cure, but PT can help manage it a bit.

The pulmonologist was concerned about Adam’s alarms going off at night when he slept for low heart rate. We were also concerned about the monitor itself – since it seemed to be acting up a bit. So Adam is back on oxygen at night only, we have a new monitor for him, with new settings. Since then – no more alarms. Is it due to the O2 or the new monitor?? Not sure.

On the plus side – it has been a lot of fun seeing how much they are developing so quickly. Eleanor is doing great now grabbing things (like her brother’s ear, and her brother’s toys that he is holding on to). Adam is really interested when we talk to him – really watching our mouths move then trying to “talk” himself, fun for hours. Eleanor is also known as “Miss Giggles” – since anytime just about you look at her and smile – she returns with a huge smile and often a series of giggles. Very rewarding.

Adam’s feeding is going better. He is taking more food now, and not fighting it. Michelle even started him on rice – and he ate a ¼ cup yesterday.

Adam, Eleanor and Alex have an appointment with the Doctor today. Michelle has painted Eleanor’s toe nails to get her ready. We are all quite interested in what the pediatrician has to say about Eleanor’s stiff legs. Look for another update soon.


Jill & Terry said...

I missed your updates so much. Sorry to hear about your Dad's passing, you have a wonderful picture on the blog of him holding the twins. We to have a appointment today, so I am off today to go to that. Please keep the news coming, maybe this summer we can get together. My prays are with you all, you are the strongest family I know looking back at the rollercoaster ride you all have been on. But like us when they smile at you it is sooooooo WONDERFUL!!!! :)

Anonymous said...

Hello Everyone! I have not had internet for over a week and it's been killing me...I needed an Adam and Eleanor update!! I can't imagine the ups and downs you are experiencing right now. I hope you get some answers soon just so that you can move on to what needs to be done for them both. We are thinking of you and are patiently waiting to reschedule our dinner. Elise