Thursday, September 1, 2011
On August 17th Purna had her one year appt for her check up. She had her cousins with her so she was happy to be there. Which was very different than the last time she was in that office, there was some kicking and screaming when the stitches cam out. I figure as soon as all the doctors walked she would start to have flash backs and head for the door. However this is not what happen. She was just fine with all the eyes on her. The doctors were very very please at how well she looks one year later. As a matter of fact their exact words were " WOW she looks amazing, I can believe how well she healed up and the twist in her face is correcting so good." So they were pleased to say the least. They did a little bit of man handling on her head to feel how much the plates had disolved away. Which is quite a bit. They feel like there are about half gone. They do not stick up any more and unless you feel for them you can not tell they are there. She also had an eye exam to make sure there was not pressure on the back of her eyes and she checked out just fine with that as well. We will return next year around the same time and every year tell she is 6. Next year she will have to get an MRI to make sure that nothing has fused back together. There is a small amount of children that have to have the surgery again but not super common. So hopefully Purna is not one of them.
As Purna gets older she is going to realized something happen to her head I would imagine. And why she has to keep going back to that hospital every year. Even though Im pretty sure (I hope) she will not remember what happen to her as a 10 month old baby she will have an interpretation of what happen. I show her photos of her when she was in the hospital and tell her she had an owwchie on her head. That is about the extend a two year old brain can handle now. This is one of the main reason I wrote this blog for her. I wanted her to have a very true account of her time with craniosynostosis and what she when threw in just the first ten months of her life. I think the things we experience as a child lay a foundation for things to come so maybe it will enlighten her is some positive way in her future. As much as I would like to forget all about this experience, the true is I need to remember when I was the strongest and the weakest in my life and for me it fell on the same day. I need to remember when my husband stepped in when I was week and could not, when he held Purna all night long so I could sleep and not worry about her. How he crawled in to her three by five crib to comfort her for many hours even thought his legs fell asleep. Joe was and will always my hero for the kindness and compassion he shows me and the overwhelming love he has for his little girl. But most of all I need to remember my little girl makes me be the strongest person and the weakest person all in one little two foot body.
We Love you little Purna Pie!
Wednesday, July 6, 2011
Today one year ago my baby girl (not so baby any more) had her operation to correct her craniosynostosis. I remember siting in her pre-opp appointment and our Doctor telling us that next door there was a couple who was there for their one year post-opp appointment and they would be will to talk to us and answer any question we had. So of course Im going to get a moms take on it. I went in and before she could even answer me she started to cry. I'm thinking " this might not of been a good idea" She pulled herself together and began telling me her experience. It was so very helpful coming from a mommy who had been threw what Joe and I and Purna were about to go threw in two very short day. I remember walking out of that room thinking I would give ANYTHING to be her right now, and have it one year behind me. Well Purna Peeps... I am Happy to say today that is ME!!!!! I know now why she cried that day before she could answer me...not just because she remembers the day and how hard it was on her baby but how happy she was to have a healthy child and no longer had to have this surgery running her brain with worry and fear. I thank god every day for Purna's health and amazing recover.
Purna is doing so amazing and nothing about that day has slowed her down. She has her One year appointment on August 16. I'm sure she will pass with amazing colors. You can not really even see her scare anymore and her plates that were very pronounced are absorbing well. You can hardly see them anymore. She still has soft spots were they separated the bones apart but there are half the size they were. I would imagine in one more year you will not even be able to feel them any longer. All healing seems to be right on par.
Purna is talking now and has a lot to say. She has a Spanish nanny (Mari) she spends a lot of time with in the week. She loves her Mari very much. Mari does not speak much English so it's all Spanish for Purna when she is here. She understands everything she says and now mixes her English with Spanish and then a some baby talk. Luckily my Spanish is improving but very soon she will be out talking me. We are very excited how well she has picked it up and learning every day .We have been so incredible blessed to have Mari love our Purna as her own.
Purns currently still only has eyes for her binkies. We will be working on and intervention plan after she turns 2 (in two months). I'm pretty sure this is a mom problem not wanting to let go of her little baby girl, but lets not go face booking that to the world...We try to restrict them to the crib but they seem to always find there way out. I am looking for a support group to get her threw this.
I am happy to report that Purna's hair no longer looks like a mullet. It took some time for the shaved part to catch up with the rest, despite daddy thinking cutting it would help. Now that it is getting longer and its hotter out we have sprouted CURLS!!!!!!! Now graded I have to work pretty dam hard at getting them there sometime but they are there and nobody can take that from me!! We also had a HUGE breakthrough in the hair department, she now just as of about a week ago lets me put it in pig tails or a pony. And let me tell you, before if I even came at her with a pony she was swinging followed by tears and yelling NO! Im pretty sure was trying to tell me something. Apparently she is sensitive to what happens to her head now. She is also extremely extremely spacialy aware of were her head is. If she is going to walk under something she starts ducking about five feet before she gets there. Humm Go figure..
Here is Purna on her horse out back. Im pretty sure this is as close as her daddy will let her get to having a horse. She call it Vaca, which is cow in Spanish...were working on that one..
So my Purna peeps as you can see Little Purna Pie is going strong and doing just fine. Like I said before its a good day to be able to wright this blog today. I could not be more happy and feel more blessed to have my little girl and all the wonderful people in her life. Im thankful fore every day I'm with her.