This blog charts Erin's progress in dealing with Ebstein's Anomaly, a relatively rare heart defect. Erin was diagnosed with Ebstein's in February 2008 during a routine ultrasound review at 20 weeks pregnancy.
Friday, March 27, 2009
Update - March 27, 2009
It's hard to believe, but Erin turns 9 months tomorrow. On one hand, it seems like just yesterday that she was born. On the other, it is hard to remember what life was life before she was born. It almost seems as if we led a purposeless life up until her birth. That isn't true, but when you consider how important she is, everything else pales.
Erin continues to make remarkable progress. She remains happy virtually 24/7. She is off the Lasix (sp?) medicine, and none of her other medicines have had their dosage increased, in spite of her tripling her weight. Her oxygen sats remain in the mid to upper 80's, sometimes reaching the low 90's. Best of all, she continues to show very few signs of the stroke. The only noticeable sign is that she tends to keep her right hand clenched, although she has no problem using it. She tends to favor her left hand, but will often initiate a movement with her right, and is completely at ease switching to it when we restrain her left hand.
We were concerned that once Erin was able to start crawling and walking, the stroke would make its presence known via weakness in Erin's right leg. She started crawling two weeks ago, as well as pulling herself into a standing position and cruising around while holding onto something, and there is no evidence that she favors her left side. We are very optimistic that walking will not show any right side weakness at all.
The week that Erin started crawling she also got her first two teeth (bottom front). I can attest to the fact that they are sharp little choppers. As for her crawling, it is hysterical to watch her crawl around. It is also challenging, as the minute you put her down she flips over and takes off. It used to be (in the old days, when she was little :-)...) that you could put her down on the bed and let her play with something while you went about doing whatever needed doing. Now, the minute she lands on the bed, she flips over and takes off. In Scottsdale, she is fascinated with the bedposts at the end of the bed, and makes a beeline for those as quickly as she can.
She has learned how to pull herself into a standing position, so every object is a challenge to stand up to. She pulls herself up, and then lets out a squeal of delight over her accomplishment, then looks to see if Sheila or I are watching so that we can share her delight. She then takes whatever she can reach, drops it on the floor, and tries to bend over and pick it up without falling. This is repeated over and over and over. When being held, she delights in grabbing whatever she can and dropping it on the floor, looking expectantly at whomever is holding her if they don't immediately bend over and pick up the object. This is also repeated ad infinitum.
Diaper changing has become far more challenging, as she is far less prone to lay there and far more apt to flip over and try and take off. This has created a few incidents, including one recently where we both had to work to get her new diaper on her. I was the party fastening the diaper while Sheila held her, and apparently I did one very poor job. I took off for the gym only to receive a call later from Sheila that she went into Erin's room to find that she had had a massive poop that was now everywhere in her crib and all over her. I felt a combination of great sympathy for Sheila over what she had to go through, tremendous relief over not being there, and survivor guilt. I slunk back into the house upon my return and tried to be extra nice to Sheila that day. My wife is a saint. Me...not so much.
We were told by Erin's cardiology nurse that around 8 months babies begin to develop a sense of self, that they realize that they are a separate self. This can manifest itself as waking and fussing during the night, perhaps because they wake and are lonely. This has certainly been the case over the last week. Sunday night I was up 6 times with her, including an hour and one-half stint where she wanted to play. I left Scottsdale Monday for work, and Sheila has endured the same routine all week long. Hopefully it will pass quickly.
It has been a very hard week being away from Sheila and Erin. I will head back to Scottsdale today, and take off again on Monday. After spending the following weekend there, we will be returning to Chicago. Erin seems to really like the weather in Arizona (smart kid). It has been a fun three weeks, with the exception of the pains of moving into a new house. How do you accumulate that much junk in nine years, particularly for two childless people? BTW, anyone wanting to buy a wonderful house in Scottsdale, we have one for sale. It has been on the market since January 2008, and finally in February we received an offer - for half-price! The market is horrible. Looks like we will be keeping it for a few years until the market turns around. Anyone need a rental?
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment