The Merrill Family: January 2010

Friday, January 29, 2010

Never leave pencils lying around

Carly, the artist.

Note to self....keep pens and pencils out of reach

AND

don't leave said child unattended.

Thursday, January 28, 2010

5 months

My Burke is 5 months old today! He is such a sweet boy and we love him so much!

Burke loves...

his activity saucer

tummy time

his pacifiers

baths

rice cereal with bananas

playing with toys

his bouncer

sleeping on his tummy

Burke is a very happy little man.

Cayson can make him laugh harder than any of us.

Carly loves to play mommy to him but unfortunately is a little too rough.

Cayson has recently discovered that he can hold Burke and carry him around the house.

Last Dr's visit Burke was 17 lbs (55%) and 27 inches (90%).

We love our Burke man!

Monday, January 25, 2010

Hydrocephalus Research WALK

The Phoenix Zoo

Saturday, February 20, 2010

registration starts at 7:15am

WALK starts at 8:15

Zoo admission included with registration. No fee for registering.

After the WALK there will be entertainment and you can stay and enjoy the zoo for the day. Raffle tickets may be purchased for $2 each. Lots of fun prizes this year!

We would like to invite all our family and friends to join us at the 2nd Annual Hydrocephalus Association Research WALK. Our goal is to raise $1000 for the research of hydrocephalus in the hopes to find a cure. Please click on the sidebar link for General Donation if you can't participate or for registration if you are able to participate. Zoo admission is included with registration and a donation is not required but we would appreciate a small donation if possible.

Our journey with hydrocephalus began when I was pregnant with Carly. We were told at our 18 week fetal survey that Carly had extremely large ventricles in her brain and likely had other genetic problems. It was suggested that we consider aborting because she would most likely suffer severe brain damage and have severe health issues. That was never an option but we chose to have an amniocentesis so that we would could seek the proper medical care and be prepared for her birth. In-utero Carly was diagnosed with Aqueductal Stenosis which caused hydrocephalus. I had ultrasounds every 3 weeks to monitor the ventricular growth and at each visit they continued to grow rapidly. The decision was made to deliver at 32 weeks if the growth continued. We made it to 32 weeks and while the growth continued it wasn't growing at the rate it had been so we went to a week to week basis. By 35 weeks the decision was made to deliver. I had another amniocentesis to check lung maturity and although she wasn't quite ready, our neurosurgeon felt that waiting longer could cause her to suffer even more brain damage.

Carly was born Friday, March 21, 2008 by c-section and was immediately intubated and taken to the NICU. Her head was extremely large and after her first brain ultrasound it was determined that she would have extreme brain damage, would survive off machines, would never walk or talk and would probably not have a long life. Our road in the NICU would be months. SHE WAS IN THE NICU FOR ONE WEEK!!! Miraculously, by her next brain ultrasound it was like a completely different brain. She still had the hydrocephalus and would need a shunt placed but her prognosis improved. Although we still did not know the extent of damage we knew that she would be okay.

Carly had a VP shunt placed 3 weeks after birth on Friday, April 11 and was released 3 days later.

Because of the location of her shunt, Carly could not be on her back and could only lay on the sides of her head. This caused her head to be very tall and flat on the sides so she wore a helmet for 4 months to help her head mold to a more normal shape.

Carly will be 2 in March. She has minor developmental delays and has physical therapy, speech therapy and early intervention to help her. She has gone from a 4-5 month delay to 1-2 months so we have seen a drastic improvement! Last March after her yearly MRI she was diagnosed with Chiari Malformation and Agenesis of the Corpus Callosum which are both brain development abnormalities. Both have health risks but have been non-symptomatic so far. She will have another MRI in March to check everything. We have been very lucky to not have any malfunctions with her shunt as many children suffer infection or malfunction and have a shunt revision within the first year. This is my baby girl that would most likely be severely brain damaged and that I should consider aborting. Goes to show Dr's don't know everything!

There is no cure for hydrocephalus. Please help us support Carly and join us as we WALK to raise awareness and raise money for hydrocephalus research.

Friday, January 22, 2010

I love sushi after a fight

As requested, I am posting about the psycho parking lot guy and the hit and run.

On the way to eating dinner tonight I saw an old homeless man crossing the street and get hit by a car. I guess I can't call it a serious hit and run, the guy called out his window then drove away. I turned into a parking lot and Thad and I went to check on the man. His leg was banged up and bleeding but he didn't want any help so I gave him some money and we left. We got to the restaurant and my mom and dad took Carly and Thad and I walked ahead with Cayson and Burke. Next thing I know I heard my dad yelling at a guy who was standing outside his car moving towards my dad who was holding Carly. Apparently the guy wanted to turn down the row (going to wrong direction by the way) that they were crossing and he yelled at them for being in the road. My mom apologized but he kept going on and pulled closer to them and started following them with his car while yelling out the window. My dad started yelling back. which is where I heard everything going on. I told Thad I thought there was something wrong and he noticed that the guy was out of the car yelling at my parents who had our daughter with them. For those of you that know Thad, this did not go over well at all. I couldn't hold him back and this man obviously wasn't going to back down even with a small child present and since that small child was Thad's that made the situation worse. Once the guy (a middle aged man actually) heard and saw Thad coming after him he changed his tune a bit. I left Cayson with Burke and headed over to get Carly away from the yelling, afraid that it may come to blows. Luckily the man wised up a bit and got in his car and drove away. Sigh of relief so we go into the restaurant. Guess who I see walking around opening doors to other businesses looking around? Idiot man who obviously has a death wish! This moron was looking for us. He walked into the restaurant and looked around and either didn't see us or was scared that he would get his old man butt kicked and left. I thought that I was going to see Thad get in a fight for the first time. I thought that I was going to stab the jerk in the throat with the keys that were clenched in my fist. He was really going after a man holding a child...what the heck?!?!! I was so mad and I was shaking and a tad scared that Thad was going to go to jail. 30 seconds, 2 minutes or 5 minutes can change everything. If we hadn't stopped for the guy that was hit by the car we would have avoided this situation all together. If I wouldn't have stopped at the light and gone straight in the restaurant we wouldn't have gone through this. But at least I got yummy sushi! I wanna kill someone but I got yummy sushi!!!

Monday, January 18, 2010

Grandpa Lee's funeral

I am finally posting pictures of Grandpa Lee's funeral.

The whole funeral was amazing. The kids did great singing, the speakers all told some great memories of Grandpa and most of all, we got to spend time with family we don't get to see too often. And as we Greene's do, we found a way to still have a fun family shin-dig after the service.

I knew that Grandpa's time was close to an end...we even joked that our lives would be easier if he would just up and bite the dust already. But I wasn't ready for him to be gone. I wanted to go see him the night before he passed away when he was in the hospital but it was late and we needed to get the kids home. My mom went to see him though and I called while she was there and she told him that I loved him and was thinking about him. I was planning to go up the next time we were in the area. So when the phone rang the next morning at 7:45, I wasn't ready to hear that he had passed away. I didn't get to see him and tell him goodbye. My mom said that I wouldn't have wanted to see him, that he didn't look good. I got to see him 8 days earlier though- he held Burke and Carly- he complained about wanting to smoke, I nagged him- he said he was an angel...the personification of purity...I told him to shut up and keep eating- he said "Lace, don't get old...getting old is the pits!" I'm glad that is my last memory of him. He wasn't his normal self but there was still a little bit of that ornery and feisty old man in there. I smile when I think of Grandpa Lee. I miss him. I wish I would have gone to see him more when I was on that side of town. I regret not going to see him. I regret that Burke didn't get to be with him more. But he was with him 2 times, that's pretty good, right?

I learned not to take things for granted from this. I learned to cherish the times you have with the people that you love because as expected as his passing was, it was unexpected. Grandpa is no longer in pain. He is happy. I think he is looking down on all his "pooh's" (that's what he called the grandchildren) and watching to make sure we behave but not so much that we don't get to have fun. That was his motto, if you are being good then you aren't having any fun!