Thursday, December 22, 2011

One of my favorite Queen songs....

Can anybody find me somebody to love?
Each morning I get up I die a little
Can barely stand on my feet
Take a look in the mirror and cry
Lord what you're doing to me
I have spent all my years in believing you
But I just can't get no relief, Lord!
Somebody, somebody
Can anybody find me somebody to love?

I work hard every day of my life
I work till I ache my bones
At the end I take home my hard earned pay all on my own -
I get down on my knees
And I start to pray
Till the tears run down from my eyes
Lord - somebody - somebody
Can anybody find me - somebody to love?

(He works hard)

Everyday - I try and I try and I try -
But everybody wants to put me down
They say I'm goin' crazy
They say I got a lot of water in my brain
Got no common sense
I got nobody left to believe
Yeah - yeah yeah yeah

Oh Lord
Somebody - somebody
Can anybody find me somebody to love?

Got no feel, I got no rhythm
I just keep losing my beat
I'm ok, I'm alright
Ain't gonna face no defeat
I just gotta get out of this prison cell
Someday I'm gonna be free, Lord!

Find me somebody to love
Can anybody find me somebody to love?

Queen - Somebody To Love lyrics

Funny how you start to find little things that have been there all along. :o)

Thursday, December 15, 2011

Addie's 6 month well baby

Addison weighed 20 lbs, 9 ozs and was 27 and 1/2 inch long. Her head circumference is 49cm and seems to be slowing down in growth, which for now is a good thing. It's a delicate balance between wanting her head to grow some so that her sutures don't start to close but not so much that it will make her lose head control. So a slow down but still growing is good.

Dr. N was thrilled with her! She said 'she's miraculously." Addie is sitting up, officially at 6 1/2 months old. We're still working on sitting skills with PT because the PT goal is to be able to sit her up on the floor and walk away from her and not worry about her falling over, but her PT said that's not the same as a milestone of sitting up and as far as the medical community is concerned Addie is sitting up. We're so proud of her!! It's really amazing, considering what a noggin she has on her!

She is rolling over back to front now, and has begun to barrel roll. She's reaching with BOTH hands now and will even cross midline with one hand to get something on the opposite side of her body. AWESOME!

Dr. N said we always look at how the child is doing and the scans are secondary, and that what Dr. K meant was that given her head circumference increase, she would have assumed that her brain tissue had expanded, and that when she saw that it hadn't increased since August, she was assuming that Addie was under pressure still. Which made total sense to me. So then Dr. K saw Addie and watched her in person and that threw all the assumptions she had formed based on her head circ and scan out the window. So we are going by how Addie is doing, first and foremost. Dr. N also said that she trusts Dr. George completely, which I do as well, but that there is nothing wrong with asking what the plan was as far as Addie's ventricle sizes go! So that's the plan. But it can definitely wait til February, at her next follow up appointment.

Addie got her six month vaccinations and we went ahead and gave her the flu shot. I've never given my kids the flu shot that young, but Addison is a different kinda kid. She's too young for anti virals and with her hydro, things aren't as 'straight forward' as with other kids. So I agree 100% with given her the flu vaccination. She'll have to go back for a booster in January. She did run a bit of a fever later that night but she never lost her appetite and the fever was gone the next morning. So not a bad reaction in my book!!

Friday, December 9, 2011

Second trip to Duke

Adam and I took Jack and Addie to Raleigh Durham for Addie's second stem cell infusion on December 2nd. We were delighted to have Adam's family fly up to meet us and stay a few nights at the hotel in Raleigh. It was great to meet up with Adam's family and spend a little time with them so close to Christmas! We definitely do not get to see them often enough!

Too quickly it was time to say bye to Adam's family Sunday morning. As a family of four, we mainly stayed in the hotel the rest of the trip. It was more of a laid back trip this time around, as it's Adam's last vacation time before Addie's next infusion in June. 

We did get to try The Pit BBQ restaurant in Raleigh this trip and enjoyed it! Definitely worse going back to it next trip. Their banana budding is AMAZING!

Tuesday was our infusion day. We didn't need to be at the hospital til 10:30am.

In the car on the way to Duke

We were greeted with Christmas Carollers in the lobby
 It was a special day for Addison, not only because she was receiving more of her stem cells in the hopes that it would offer continued healing of any brain damage she sustained before she was shunted, but also because she was meeting a fellow hydro buddy for the first time.

Miss M was born just three days after Addie and her mom and I met on a support group on Facebook. We were able to schedule their infusions for the same day! We ran into them in the hall way before we were called back for Addie's initial exam and then we were placed in the room next to them for the actual infusions.

Addie did great during her infusion! She watched the entire process, wanting to sit up and NOT lie down this time.

They got her IV started on the first stick which was great! Dr. K was very impressed with how well Addie is doing. She said she was prepared to see a totally different child based on her head circumference increase and the fact that her scans don't show a difference in her ventricles since August. Her words were "She's doing much much much better than her scans and head circumference increase would have indicated."  She does want me to follow up with George about the lack of decrease in ventricle size, which I had already intended to do, but it will be nice to have a litle medical enforcment when we see him in February.

As we were being discharged, Dr. K and I were marveling at what she might be doing by the time they see her for her third infusion. Dr. K said "She'll be walking!" Very exciting to think of the possiblities! We're thrilled with how well she's doing and pray she continues to do as well, but we know there are many ups and downs with hydro. We celebrate all the good days and all the milestones and are still trying to enjoy every moment!

We flew home to find an inch of ice on our windshield that had been sitting in long term parking for five days! It was good to be home though. Addison is still a great traveler, though she did not want to go to sleep on the plane. I think she was scared she'd miss something. She is a very curious little girl, which I love!!