It is so nice to be home. It took us about two weeks to get everything unpacked, put away and back on to a routine again but things are looking good. We are picking back up with therapies again, had a few doctors appointments, and we are now enjoying life with a two year old. Boy, is she is ever a two year old :-). She definitely, has a set way of wanting to do things, and if they aren't done how she feels they should be done she lets us know about, I remember when I use to look forward to hearing her cry, while she was on vent :-).....just kidding I still love to hear her voice, and who doesn't enjoy a good bleeding eardrum every so often ( again just kidding :-)). It is like someone threw a switch and turned her on. She runs, talks all the time, and she loves to explore and laugh. It was, hilarious, last week she saw a couple older kids playing jump rope and she was mesmerized, you could just see the gears turning in her head...now how do I do that?
We got a chance to see her cardiologist last week and his news was about half and half. Half great news, half not so much. She is doing great, the heart function is good and they got rid of most of the leakiness in her valves. The not good thing is that we have somethings that we need to be prepared for, granted these are not imment concerns, but they are concerns. One is that we are going to have to watch for the behavior issues. It is very common for the CHD kids to have a lot of behavior issues around 4 or 5, I know it can be common for ALL kids to have issues around that age but our doctor is telling us to be prepared. Things like ADD and ADHD. are very prevelant, as well as acting out and aggression ( great I worried about her being a push-over, now I got worry about her being the bully). We are looking into medical and non-medical interventions and I am, fairly, confident that Aubrey and I can handle what is to come with behaviors. The second issue is her rythm, she ain't really got one. Well, she does have one and it is SICK DUDE....WHOA MAN ( sorry imagine myself as a surfer for a second). Alright back to reality, they did an EKG on her heart and saw that she was in a JUNCTIONAL rythm. The heart is supposed to work as a well oiled machine, and the top part of the heart is supposed to pump in conjunction with the bottom of the heart. Kylie does things a little different (come on...anyone suprised at this point), she has what is calle SICK SYNUS RYTHM, the heart doesn't want to pump as it should. If her body were AMERICAN IDOL her heart would have been William Hung, just doing his own thing. Well, it isn't a big problem yet, but will become one latter on. They hooked Kylie up to what is a called a HALTER MONITOR, basically a 24 hr, portable EKG machine to see how bad it all is. Depending on the read out on that will start to tell us how long before our next move is, pace maker. It is not so much a question of if Kylie will get one but WHEN. The rough estimate is 10 years from now, so we have time. A few issues with a pace maker is that it is going to need continuous maintence, recharging, and we got to put the sucker in. In a normal heart anatomy, they could go in through the neck and put it into the heart, a minimally invasive procedure. Kylie has many things, but a normal heart anatomy is not one of them, so it is going to be another open surgery, and if I am not mistaken, all the other things that have to be done to the pacemaker will be surgeries as well. Remeber when I said it was wierd not having to plan for another surgery, should have kept that to myself :-). Also, we have the risk of heart failure and heart transplant, latter on in life. When you are in this you are in it for the rest of your life.
I am looking over what I just wrote, man I needed a grammar teacher, and it seemed liked it was complaning. Maybe, in a way I am, who wants to see their child go through this. But, I know that God has given me a special angel, one that has touched and inspired more people than I will ever know. One that is stronger than I will ever be and still manages to smile. I will praise God for that ever day for the rest of my life and I will do what ever needs to be done to make sure that my daughter is healthy and strong and I will do it GLADLY. My daughter is a gift from God, and other than her pain, there isn't a thing I would change about her.
So what's up in the near future you may ask. Well, we have a couple of appointments next week at U 0f M. One is to see if her urinary reflux has cleared up and to see if she can come off the Bactrum, antibotic to avoid UTI's. I hope so because she has been getting yeast infection bcasue of the antibotice, so I am looking forward to that going away. Also we will have her speech therapy and her Early intervention therpay. We are looking forward to seeing her teachers again.
Thanks for your prayers and support. Please be praying for the Hammit family, they are coming up on their second surgery, the beginning of next month, Bowen looks fantastic, I have only seen pictures latetly, not the real baby, though I wait egarly ( hint Sarah...hint hint :-D). Also please pray for my cousin Ibrahim, he is having some liver issues and it looks like he will be in need of a transplant. And always please be praying for all the CHD kids and their families. We have seen what your prayers can do.
