Thursday, September 1, 2011

One year Post Opp Purna!

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

Purna Passing the Time, ONE YEAR

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.

The Mommy

Friday, October 8, 2010

Purna Returns!!!

Hello all Purna fans... She returns! Well today was Purna's three month post opp appt. So not quite sure if I feel like it was three months ago or yesterday. I think Purna thought it was a long time ago tell she saw all the doctors walk in the room. She freaked out pretty quick. They took her head specs and you would of thought she was going into surgery again. Weird how she just senses something and knows. Her head size is now in the 50 percent from the 20 pecernt she was in before her surgery. So that is good and now her brain can grow grow grow!!!

Other than Purna being really upset at first her appt went just fine. It was short and sweet. The nuero surgen actually said when he first saw her " wow does she look good I could not even tell right away which side was the fused side, the curve of her face is already straighter" so that made me feel good. But then her plastic surgen says well you can see her nose still slants to the right. It's so suddel I hardly even notice and I'm the mommy. My point is that is how detailed this surgeon is. She know so well what she is looking at. And then again this makes me happy with the chioce we made for Purna. They said she will be a good three years old before her skull is fully healed and closed up. So intell then she is like Frankenstein baby with her bummpy plates sticking out the side of her head. I don't mind at all when I see them to me that is a reminder every day that this is behind us and she is a healthy happy girl.

Her eyes look great now. They are still a bit uneven but to most would never notice. Her right eye is still a bit pulled tight and still has some relaxing to do. You can only really tell when she is looking down or her eyes are shut. So I guess if that stayed that way Purna will never see it, being she will be looking down or have her eyes shut.

Her hair has grown back fast. And boy o boy is she blonde. She kinda has a comb over but it goes fowards like a comb foward so you really can't see the scar on the top. However it is pretty red down the sides. Being her hair is so light you can see it. People always think it's a headband mark. But as soon as her hair is long it will be less apparent. I think I ended up finally taking out the lasted burried stich about a month and a half after. They really hung around for a while I'll tell you.

Purna is walking now. Which as you parents know changes the "flow" of our life as we know it. And if we had a nickel for every time our babies fell with this learning process we could retire in about a week. Now add Purna falling 20 times a day.... I'm not getting nickels I'm getting heart attacks!!! So I did what any good paranoid ( with good reason I tell myself) mom would do and got her a little safety helmet to wear. Ok before you all start judging I only put it on her when she is walking or falling around the house, when she rides her little push bike and playing with other kids who throw toys. It's not like I'm going to make her wear it to her first day of school... Just tell the day before. And for the record I can see her pluse beating on the top of her head so this makes momma bear a bit nervous. And one more thing... It has cute bunny ears on it so she is fashion foward when she wears it. This is all how I'm justifing putting a helmet her. The doctors say she does not have to wear anything but what I think it's come down to is it's for me not her. But I'm sure you all figured that one out.

So what other exciting things about Purna since I have all your attention. She can say: mom, da, cat, dog, bird, and what's that. I do have very sad news to report however...the degalws are no longer. Yes sad I know. She is using sign language really well now which cuts down on the winning alot! She can sign: more (which she also used when she wants food and is hungery), all done, tired, and she made up a sign for my iPhone when she wants that, you know when she has to facebook or call random people in my contacts which happens daily. Sorry

So it's been a very succesful passed three months I would say and our sweet Purna is doing great. Not a day is taken for granted with her. Her next appt is not for nine months, that will be the a year. They will do and eye exam as well. So now she is just ready to be a toddler!!'
Here are some more current shots of her and video of her walking..... yes with her helmet!

You can see in this shot how her right eye on the outside corner still folds under a bit.

Purna's new friend Carlos Santana.

The walker!!

YouTube Video

She gets her dancing skills from her dad,.... Clearly!

YouTube Video
- Posted using BlogPress from my iPhone

Thursday, July 22, 2010

Progression Purna

Here is the progression from the day before surgery July 5 to today July 22.



July 6 (day of surgery)

July 7

July 8

July 9

July 10

July 11

July 12

July 13

July 14

July 15

July 16

July 17

July 18

July 19

July 20

July 21 (two week post opp apt)

July 22 (today)

As epic, beautiful and strong as the Annapurna Mountain herself...

We love you baby Annapurna Ruth Vine. You are the most amazing, strong and beautiful little girl. Your sweet little spirt fills our hearts with so much joy every day. You completly nourish our lifes to to fullest.

Post Opp Purna

Well today was Purna's two week post opp appointment. The doctor said she looked really good. She came in and said well let's get the stiches cut out. Before she even finished her sentence Purna knew somthing was up and started to wine. I said she is not going to like this.... The doc says well she is going to be pissed either way so why do you leave, seeing in my face I was not going to like is any more then Purna. This is were daddy shines and mommy turns into a wimp. Daddy could not be with us tell tomorrow so grandma and grandpa took the lead on this one and I excused myself tell it was over. Not like Purna wants anymore doctors either but I'm so done. I know total wimp. Sorry Purna. My mom said she was more mad then in pain. As soon as they stoped she stoped crying. When I got back she was not crying just upset. I just can't take watching her in pain anymore even just a little. So they jut sniped the knots off the stiches and I'll just be pulling them out. She will be back in three months for another check up. I asked her about her eyes being tight and she said it will take a good two months to return to normal. The ligaments on the sides were cut so if she did not tack them up high and tight her eyes would be sagging. I knew all this I just wanted to hear it again. She already looks great so I'm happy!

We went to lunch after her appt and she fell fast asleep on grandpa chest. Then home for dinner and a bath. I took her on and evening walk since she is not going to sleep tell like 9 now.
Daddy will be back tomorrow so we are excited about that.

I will do another blog tomorrow of one photo for each day so we cam see in a row how each day she healed. I aslo want it for Purna's book I'm making. Then I will only be updating the blog a few times month. So check in now and again if you miss little Purna.

Joe and I want to thank all of you Purna followers so much for all you love an support. I'm sure you know how happy we are that our baby Purna is well one her way to a full recovery. Everyone of yours prayers and thoughts helped us get thew this experance. I had no idea when I started this blog that so many people would join us on this journey. We love our baby girl more than anything is this world and would of done anything for her not to have to of gone threw this. However we thank god everyday for her health and that there are amazing doctors and nurses in this world that dedicate their lives to medicine. I will not let a day go by now without looking at Purna and just saying thank you thank yo thank you.

Purna on her way to see the doctor...

Look how happy I am before my stiches were cut out. Doctor did a very good job. Look how happy mommy is the is the "Post" opp appt.

Look how much better my eyes are looking.

YouTube Video

- Posted using BlogPress from my iPhone