Tuesday, June 19, 2012

A week away...

We headed to my hometown in the Hill Country for a week away, and for the boys to be able to attend VBS at my childhood church. We had a wonderful week, adding in a day trip to Fredericksburg and lots of swim time for Grayson.

On the way there, we stopped off at GiGis cupcakes and bought half a dozen to take with us. From top left clockwise is Chocolate Salted Caramel, Some lemon one we never got the name of, Chocolate Chip Cookie Dough, Red Velvet, S'more, and Pink Princess. The Chocolate Salted Caramel and Chocolate Chip Cookie Dough were my faves!

Addie helped herself to the Chocolate Chip Cookie Dough one!

Addie got to hang out with Jacob some! My mom's oldest and youngest grandkids.
We finally broke down and make a redneck pack n play. Never will I leave ours at home again!
Jack asked PawPaw if he could wear his hat on our day trip to Fredericksburg... so naturally we had a lot of photo ops and when I saw this store sign, it was a must do pic!
Jack and Jackie!
Addie was a trooper! She was so good, waving and telling people hi as we walked the main street full of shops.
Checking out her bubba
On the way back to my parents, we drove through Willow City Loop and were amused at someone's idea of fence decor. Every post had a different boot on it.
View coming down Willow City Loop
My boys with their cousin, Jared. They all had a lot of fun together !
Addie eating Grayson's face off.
RAIN!! I love rain but I love it even more when I'm at mom and dad's.
Addie mooching off PawPaw's dinner plate.
Mom has always let her kids and then her grandkids play in her pots and pans cabinet. Addie was no exception.

Saturday, June 9, 2012

Second week of Summer Vakay

Our second week of summer vacation was a pretty busy one. My niece and nephew were here for the week, Addie had several therapy sessions, her one year eval and an ophthalmologist appointment. I was very happy to have the extra help from my niece, Raychel!! Raych- you can move in, anytime!!

The eye appointment went well. Dr. R does want us to do paralytic eye drops to keep her from crossing her eyes for 7 days. The idea is that she will be forced to wear her glasses to see since she will be unable to cross her eyes to bring her vision into focus. We are currently on day two of her drops. So far so good. She is wearing her glasses more at home than she was. For the longest time, she would refuse to keep her glasses on at home, but would wear them when we were out. It does help that she is getting old enough to understand when I tell her that she has to leave her glasses on. You can even ask her "where are your glasses?" and she'll either touch her glasses or reach for her head or neck. It's pretty cute!!

Her one year ECI assessment went great! Her therapists and service coordinator were here for 3 hours! Addie has a slight delay in receptive language but they aren't concerned about it because it shouldn't really be emerging quite yet. She is also 3 months behind on her left side from her right in fine motor skills. Other than that, she is on target or ahead for all other milestones. PRAISE God!!!!! What an awesome report!!! Addison would technically not qualify for services based on the % of her delays right now, if it weren't for her medical diagnosis. So amazed at her and at her creator for placing such a miracle in our lives!!

A few pics from the week... these pics are out of order... nothing I  can do about it when I upload them straight from my iPhone. 

The expression on Jared's face cracks me up. "What do I do with a baby?!" He's the youngest in his family and isn't used to being around little ones.

Sharing their Popsicles with their sister.

Raychel was able to go with Addie and I to Addie's eye doctor follow up. Such a big help!
New phone app lets me caption my pics as I take them! Nice!
Adam and I had date night thanks to Aunt Missy!! It was much needed and we both enjoyed it ! Dinner, shopping, and a movie. :)
Addie likes shoe shopping! Wonder why??
Waiting for Dr. R to come into the room.
Physical therapy!
Addie loves her Raychel!
This is her sweet talking face when she wants something... mainly my laptop. After two hard drive crashes in two weeks, I'm a little paranoid about her even touching it!

Monday, June 4, 2012

Summer time!!!

We are very excited that it is summer ! Grayson is home from school and we fully intend to enjoy every stinking moment we can this summer. I also have a list of summer projects a mile long and a pretty full calendar, especially for the month of June!

We have Jared and Raychel here this week while Jacob is at camp.  Addison has a bunch of extra therapy appointments this week since we are only going to be home two weeks in June. Her one year ECI eval is Thursday so that should be interesting..... all three therapists and her service coordinator all here to assess her development.

Then we are going to my hometown on Sunday so the boys can attend VBS all next week. Thankfully Mom has internet NOW!!!! I can blog and keep up on Facebook and all that stuff while we are there. Whew ;)  Plus, I figured I would multitask while we were gone and scheduled myself an appointment with the dentist for a crown *FUN* and an appointment for Hannah to be spayed. Fun for her!

We are hoping to squeeze a day trip to Fredericksburg while we are there to get some shopping in and mainly some ideas of things to try to duplicate at home for much less money! I am also hoping to hit some antique stores. Never know what we could find. Exciting! Someone in the week we are also hoping to make it back to our creek for another picnic.

A quick week home that is filled with therapy appointments and then we'll be packing up to head to Florida!!!!!! I am giddy at all the thoughts of our first family vacation. So excited and thankful we are able to do this so soon!!

We were supposed to go back to Duke first for Addie's third infusion and then swing down to Florida to visit Adam's family, but after much (MUCH) discussion on our parts, and emailing back and forth to Duke, we have decided to postpone Addison's third infusion until October and just make our June vacation a family NON medical related trip. And it was a huge weight off our shoulders when we finally came to that conclusion. We are so thankful for the opportunity to do the stem cell infusions for Addison. And we firmly believe they have played a large part in how well she is doing developmentally. But we also have had a pretty busy last year... and all three of Adam's vacations have surrounded hydrocephalus. And so, when the thought occurred to us to take a non-medically related trip.... it was tempting. Very very tempting. The one catch would have been Addie's weight. She's a big girl... 95% weight for her age. And the stem cells are effective up to a certain mass. It was all hinging on how many cells she had left and how long we could postpone it based on her weight. If she was a half pound away from her maximum effective weight for the stem cells she had left, we were going to have to find a way to get to Duke now.... or not do her third infusion at all. Something we felt we had to consider... at least to say we had thought it through. Thankfully, the email came back that we had some time, even if she's gaining a 1/2 pound a month. So we happily re-scheduled Addie's third infusion for October. And we are going to fly down and back in just three days and make it a quick trip. No vacation time required for Adam. We feel so good about our decision!! And the prospect of 9 whole days of relaxing, family quality time mixed with visiting Adam's family... is a wonderful wonderful thing!

All that being said, as always.... we are well aware things can change on a dime with any child, but especially a child with hydrocephalus. So as always..... we are moving forward with intent...and FAITH that this will happen. And if it doesn't, we will roll with it.

In the mean time, I am making lists of things to do for road trip projects, and things we want to do once we are in Florida and maybe even some pitstops along the way. Fun! Love me some good planning.  (Thanks Aunt Missy and MeMaw for house/dog sitting while we are gone!)

Once we get back from vacation, July is looking a little calmer. Thankfully. I do have to return to my hometown for part deux of my dentist appointment and then we are smooth sailing from then on. Praise God! Addie has a few appointments in August and then it'll be back to school before we know it.

That's our summer in a nutshell!!


Memorial Day 2012
Daddy home = blueberry pancakes!!
LOVE this picture of Jack!!