Lumps and Bumps Oh my

Well another week has passed.  I called Dr Fearon's office last week and we decided to move Kaiya's surgery from June to May.  I cant take the waiting anymore. It seems with each passing day her headshape gets worse and worse.  I know the time from 6 - 10 months is a big time for head growth but wow poor kiddo her head gets more mishappen by the day.  So we should know the date for surgery either this week or next.
But lets forget about that for a moment.  Let's talk about this amazing wonderful baby.   Kaiya is sitting.   Yes, she is 9 months old but she is only 7 adjusted.   She is starting to use other sounds than ahhhh when she is talking.  She rolls everywhere she wants to go.  She is all over the place.  She is starting to experience seperation anxiety and it's so funny.  Well funny to me not to her.  She is a fiend for her pureed foods and loves those gerber crunchies.  This weekend she tried a raspberry and that didnt go over very well.   She did great with the bites of muffin and pizza crust but she must not have liked the raspberry.   She is teething in a weird way.  She is working on bottom teeth 3 and 4 and still doesnt have any top teeth.   Hmm thats weird.   3 kids and she is the first to teeth like this.   She loves her bath time and in general she is just the happiest little thing I have ever seen.  She was laughing so hard during family time yesterday it was so cute...  I figure she is reaching her milestones just a little behind her adjusted age but I think its just cause she doesnt have the strength in that little body yet.  We keep working with her and she will be fine.  They say with preemies they usually catch up by 2.  Growth wise she was on charts at 2 months and now at 60 % tile or above but milestone wise is a little slower for her.   

Alas her poor little head.  Her forehead is getting more and more lumpy.   when you look at pictures you can see that the left side is getting bigger and bigger to accomodate her growing brain since the right side of her skull is fused and the brain cant grow how it should.   A friend shared with me last week the procrit info and some other info from Dr Fearons office and I am so grateful for that.   I know they will send it to us soon but having it now made me feel not so in the dark.  So Liz if you are reading this you are my hero.  And thanks so much for sending me the video and pictures.  Those kind of things mean so much.   Anyway.   This blog allows me to get out my feelings and thoughts.   And maybe just maybe we help another cranio mom in the process.  
Here is a  pic of my princess sitting up..

Fundraising ideas and thoughts

Well.  I am stressing.  I am stressing the costs of the travel to Texas and the fact that my time off from work will be unpaid!   So I want to do a fundraiser.   I am thinking of asking friends and family to donate items so that I can have a huge yardsale.   I am also thinking of creating a fundraising website so that people who may want to help out can do so!  I am not sure if that is a good idea or not!   I dont know what else to do.   Airfare is going to be like 1400 bucks for Ray, Kaiya and I to fly down.  Hotel another 300 - 400 and food for Ray and I while we are there plus the costs of a rental car.   Then we have to support the household here while we are gone and I wont be getting paid for my time off from work since I am out of leave and will have to use FMLA for Kaiya's surgery and recovery time.   So what does everyone think about my fundraising ideas????  Do you think a donation site is a good idea?

I like this pic of Cam and Kai.  It shows Cam's onerey side and what a great big sister she is and it shows how big Kai is getting.  One thing I dont like about this picture is that it shows how progressive Cranio is.   Kaiya's head is starting to look worse.  (I knew it would) but now its becoming more obivous.   I think that people are looking at her funny when we go places.   I know thats a horrible thing to think and I shouldnt care but ughh....   She is still my sweet beautiful baby.   And she and Cam look so much alike.   I want June to get here but I wish I had the travel part figured out.