Tuesday, May 20, 2008
The smiles continue
I usually pride myself on being able to function on very little sleep however, today I feel as though things are catching up to me. I have been exhausted since the wee hours of the morning, as I blearily nursed Zoey , nodded off several times, couldn't remember exactly how many times she actually was up or whether I changed my diaper (yes, I actually typed MY DIAPER and left it so you could see the exact extent of my fatigue!) Anyhow, you get the idea. Tired, really, really tired. Zoey had a cardiology appointment first thing in the morning, at Children's, to follow up on her hypertrophic cardiomyopathy, thick heart. I think I could say with almost 100% certainty that we have been to one doctor or another at LEAST once a week, somewhere, someplace over the last 4 months. I hate to even think about how often it has been in the entire last 15 months. Yikes. Zoey is pretty much doctored out. I wish I could say that was going to change some time soon. Not likely. So off we went and unlike the past couple of appointments, Zoey did not have to be sedated. Other times they had no choice because she was so agitated they could not get accurate measurements, so sedation was the only option. This time however, Zoey was a dream. Down right flirty with the technician. Her measurements are the same. Her doctor is not concerned right now as long as there remains no blockage, and now that she is off the ATCH, the likely hood of that becomes much less. Hard to tell when we will see a decrease but her doctor compared it to her chubby cheeks. Strange but true. When those come down we will probably see a decrease in her heart size too. Just an outward indication that things in her courageous little body are returning to normal. Zoey charmed everyone and they all were so pleased to see her feeling so much better. Her disposition continued throughout the day. And my exhaustion continued as well. Zoey and I did a little therapy together. Although her OT comes 3 times a week we seem to be at a stand still, with the seizures having set us back. If it wasn't the seizures it was the meds. Or vise versa. We really are hoping to take advantage of her new energy and hope the reemergence of the seizures and the hypsarrythmia won't side track us further. Her medication seems to be continuing to do a fairly good job. On Friday we will start her on the final dose increase and we hope that might do the trick. If not her neurologist said we have lots of room for increase. She continues with single heads drops a few times a day and a twitch here or there. Not bad but better if they were gone. We will be adding yet another service to Zoey's already full plate: Junior Blind of America. Because of Zoey's stroke she has lost vision in her left eye. Not complete but enough. If you approach her from her left she will most likely not see you coming and once you get past her mid line from the front and cross over she will lose you also. She has done a great job of compensating however she now leans quite far to her left. You can see that sometimes when I post pictures, as well as her left eye is slightly lazy and floaty. Just another nasty by product of that crappy stroke. Makes me mad sometimes. Anyway, we continue to be amazed by her strength and determination. She has been so darling. So interactive. Zoey does not "talk" or babble or really coo at all. She is silent most of the time. But she sure "talks" with her eyes and her hands. Her hands are all over you . Especially your face and throat. I wish everyone were able to experience this love she shares with us in the most heart melting way. Her way. We are as determined as she is. Determined to keep our positive, prayerful way. Determined to seek out the best for her so she is able to continue this path of just feeling absolutely fabulous. Tomorrow I will be calling UCLA and may have some idea where we stand there. Pray for her that she will be able to get in there sooner rather then later. Tonight I leave you with a favorite quote of mine. It is from Albert Einstein. I know, you never pegged me for the "bookish" type. Well, I'm not but I do love this quote."There are two ways to live: You can live as if nothing is a miracle, or you can live as if everything is a miracle." Zoey has taught me to spend my days looking at all I see in this world, as a miracle. Not just in my little corner. Another gift from such a tiny little girl that leaves me a better person each and everyday. Who would have thought? What a lucky and very tired mom I am.