On Tuesdays Peyton has gymnastics and I usually go there and sit and watch him while he does it. Last week there was a little girl with her mother there watching her sister. I observed her for a bit, and noticed that she walked with great difficulty. She eventually came over to where I was holding Aja and started to play with her. In talking to her, I could tell that she had some mental handicaps as well. Also, I noticed that her eyes were somewhat crossed. She was very sweet and played very well with Aja. The girl then started to examine Aja, and started to touch Aja's shunt site. She said, "what is this bump; does she have a shunt?" I told her yes. She asked if she was born with hydrocephalus, and I again told her, yes. She then began to tell me that she had a shunt and that she had hydrocephalus too. Now this caught me off guard because I had yet to meet anyone in Logan with a shunt. I have to admit, I started to cry a bit there, but turned my head so she wouldn't see.
After gaining some composure, I walked over to the little girls mom and told her what her daughter and I were talking about and showed her Aja. She has the same neurologist as us and we both kind of laughed about him as his bedside manner is quite "brisk", but it's a good thing because, and although he was very overly-blunt with Mitch and I when we were in there, I would rather have a doctor tell me straight up rather than sugar coat it. Anyway, I went on to ask her if her daughter had any malfunctions. She told me yes,she had had three shunt revisions and she said that her daughter went in normal one time and came out with some limitations. She also told me that her daughter had Cerebral Palsy and that I should approach my doctor about it because about 75% of children with hydrocephalus develop some sort of CP. Anyway, I chatted with her for a bit longer and then left.
I guess all in all, I'm just a little emotional about it all. You always have your kids' best interest in mind and I've been wondering for awhile what Aja's quality of life will be like seeing as she will have some limitations (in the sense that she won't be able to participate in a lot of the same activities as other children), and after meeting that amazing little girl, I wonder what Aja's future holds for her. This might sound all doom-and-gloom, and that isn't where I'm trying to go with this at all. Mostly, I'm positive about Aja's future as well as Cohen's, but I can't help but wonder. They didn't realize that this little girl had CP until she was 3, so it's not something that we will notice right away is what I've gathered from reading up a little on CP. Also, malfunctions are quite common and I sometimes wonder if that is something that will happen. It's always in the back of my mind.
Isn't she lovely??
Our stats are:
Weight: 13 lbs= 7%.
Height: 25 inches= 14%.
3 comments:
Aja looks so adorable. I love the flower. I think staying positive is the best thing you can do through everything you are dealing with. We wish you the best always. If you ever need anything feel free to call.
I wish I knew what to say that might help, just know I'm here for you if there is anything you need. I can say this - AJA IS ADORABLE! She is so, so small! Jackson is bigger than she is already. I love that picture of her!
My name is Patti and my daughter Katie and I just typed a rather long blog in regards to Aja's shunt condition and we regretfully believe we lost it. So we will keep this one short, for now.
Kate too has a shunt, since three weeks old, and if you need to talk to someone who has dealt with this for 9 years, please email us. Kate's hydrocephalus stems from aquiduct stenosis. She has no developmental delays, is in third grade and doing well, loves to downhill ski and ride her scooter. She is a very happy, smart, outgoing, friendly kid. She is already having a great life. In fact the only way you would know that she has a shunt is if we told you. Incidentally, you could search the whole world over and not find a nicer person. Honestly.
She's tops and she has that effect on everyone she meets.
Doctors cannot tell you everything a parent must know to get through this initial period without the worry. I will tell you this, looking back when Kate was young, it was a nervous time for all of us. But now having gone through it, it is second nature to us all. We know when she is not well, the symptoms are always the same and know what has to be done...it is usually an overnight in the hospital, and this has happened just a few times in 9 years. Then she is good to go for awhile, 1 or 2 years or even longer.
I know at least some of what you are going through. I hope you will email me and ask me the questions that are running through your head, so that at least our journey 9 years down the road ahead of you can make your todays easier to handle.
Patti and Katie
Our email address is patricia_russell@ cox.net
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