Time is ticking

2 weeks!!!!!!!!!


Less than two weeks ladies & gentlemen, Rooster's surgery is in less than two weeks. I am nervous and anxious all at the same time. I have turned everything over to God and I am just following along his path he has carved for us. I am just ready for this phase to be over with so we can go on and continue with things.

Joe gets here next weekend so that is exciting! Even for the cruddy reason, it is nice that we will be able to be together again for a short period of time when it wasn't expected.

I took Rooster to see the pediatrician this morning because they called yesterday saying they needed to see her. The CT scan showed she has a sinus infection, so she is on antibiotics to help with that. It doesn't effect her surgery date, but if after surgery they don't clear out we will have to go see an ENT to have them drained. The pediatrician said it is normal for the sinus passages to be narrow(which is her problem) with this type of Craniosynotosis.

Also on Wednesday Rooster turned 1/2 old! :) AKA 6 months old. Here are some fun facts:
-She weighs 14.6 pounds
-She is 25.5 inches long
-She can sit up unassisted
-She rocks on all fours and scoots
-She rolls over both ways
-She babbles up a storm
-She isn't a huge fan of food
-She is now in her 'big girl' car seat
-She has been in cloth diapers for 4 and a half months old


:)

Left wondering

So, nothing new has really happened since my last post. The surgery is scheduled, Joe is in limbo, but his leave has been approved so he will be here. On the 17th(St. Patrick's Day) my mom and I took Ryan to get some photos taken of her as her last pre-surgery/6 month photos. Here is a few of my favorites:

It was fun, and she was so good the whole time!

On a different note.. Today was the first time someone ever said the word 'deformity' to me in relation to Ryan. We had gone to bible study class and were getting lunch when someone asked the simple question of  "What kind of surgery is she getting?"
My reply. "She has coronal Craniosynotosis"
"Oh, yes. I did notice the deformity"

Nothing wrong with that, but to me as a mother that hurt a little. Yes, does she have a deformity, yes, but that doesn't mean I need it pointed out to me. No one has ever said it to me before, and that was great, have people noticed it before? I am sure they have. I am not naive, I know my daughters head is shaped wrong, I know there is something wrong, but I don't necessarily want other to point it out for me when I am doing what needs to be done to fix it.

Maybe it just rubbed me the wrong way since it was the first time it has happened. From the pictures above and everyday, I think Rooster is beautiful :)

It's on the books.

     Today we had Roosters follow up with the surgeon to go over the results from the eye appointment and CT scan. As we thought, everything with the scan looked normal except what we already knew about so no hidden surprises. We had our in office pre-op and were told our official surgery date:

April 12th

   The date is about a month away, but we knew it would be sometime in April since the surgeon needs her to be at least 6 months old before she performs the surgery. This is a good thing because it gives us time to try and get Joe home to be here and everything. The only con is if she was to get sick, we need to have it cleared up at least a week before surgery. So fingers crossed she stays well and we can keep everything on track.

 This past week has been so much fun, Rooster does something new everyday!! We went to the big pool yesterday, and of course she loved it. She would float in her little float and then I would take her out and she would splash and giggle. The cutest thing was her wearing her little sunglasses! Out of nowhere yesterday she started getting herself up onto her knees and rocking. I took this video earlier while skyping with Joe.

   As some people know I co-sleep with Rooster and once she has this surgery we will have to give that up( :( ), but getting her into a crib, is not so easy..Today though,as in right now, she is peacefully napping in her crib. I put her in there and only had to go back in one time and she was out. So a big hooray for that as well.

Okay, I think that is all for now. With that I will leave you with some new photos!

Last night was her first night in a highchair!! She LOVED it, plus she enjoyed some of my apples. She is getting to be such a big girl.

She laid here for a long time just a talking and slamming on the keys. 

She knows she is cool. 

Really kid? 

Bath time = her favorite time of the day! 

This is what happens when you put her in water. She loves it. 

Appointment updates

This week we had two different appointments to go to before we go back to the surgeon next week.

On Monday she had her CT scan appointment to make sure everything else looked okay and it was just the one fusion. Rooster was a trooper and laid perfectly still while the scan took place. I picked up the report on Wednesday and thankful it is just the duel coronal fusion, and no other abnormalities.

On Friday we met with the eye doctor to check and see of there was any intercranial pressure. Rooster was great the whole appointment. She never fused or cried when we made her do all the little tests. As of now there are no signs of intercranial pressure. She is showing signs of being near sighted though, we will just have to keep an eye out for that as she gets older.

We go back to the surgeons office on Wednesday to go over all the results on a deeper level. I do believe this will be our last time seeing the surgeon until her actual surgery date.

This week we had a new 'first'!

-Rooster went in the pool for the first time on Tuesday. She loved it for a bit, but then she got tired and hungry.

She got tickle me elmo in the mail today, and he is already a hit. We also got the stuff from the house in NY last night, so we have plenty of clothes to last our stay, plus all of Rooster food trays for solids.

Hello World

As with any blog it needs an introduction, and I will follow that lead here as well. My name of course is Jaclyn, and my husbands is Joe. In September 2011 I gave birth to our first child, a beautiful baby girl who will call Rooster. She was beautiful and everything seemed great. She had a crease in her forehead, but they said it was most likely due to the way she was laying in me. At 2 months we had an ultrasound of her soft spot because it seemed rather large. Everything came back normal and we went on with our lives thinking things were great. Flash to her 4 month appointment while in Florida visiting and everything changed. The pediatrician  here said something wasn't right, so we went to see a pediatric neurosurgeon to see what they said. The neurosurgeon said that Rooster has Craniosynotosis, you can read more about it here. The jist of it is that some of the bones in her head have fused prematurely.

Now we are preparing for surgery, we are also trying to get Joe home so that he can be here for her surgery. We went for our CT appointment this afternoon, and this Friday we have our eye exam. Until our surgery we will be going about our days as normal.

Some facts about Rooster:

She is 5 months old & is 13 pounds
She loves Elmo, in particular the youtube video Elmo and I know it
She is already a water bug, and will spend hours in the tub if you let her.
Since being in Florida she has enjoyed spending our afternoons outside.
She loves any food in the mesh bag things...with a spoon, she is rather picky.
There is so much more I could name, but these are our newest things.

This is Rooster at birth. You can see the crease in her nose.

This is Rooster today!