update....

Well this past week was a long one for us. We started off on Monday with a repeat OPMS or swallow study for Harrison. This was a routine study to see how he was dong. He did not do so hot on his test. He aspirated the thin liquids and aspirated the nectar liquids, which is what we have been feeding him. So he is now on honey thick liquids. He does not seem to mind even though his formula now looks like sludge. After talking with the pulmonologist and speech pathologist we decided to schedule a MRI of his brain to see if his swallow dysfunction is related to his poor muscle tone.
I am not sure if I mentioned it in the last post or now, but we have been very concerned with his muscle tone and coordination. His arms seem very floppy and at times will not use them. Then there are other times which he uses them pretty well. This does a lot for a paranoid icu mom. We have been following this with his doctors and had a neurologist appointment for October 11th. Yes, that is the earliest they could see us. Crazy!
On Wednesday I came home to a phone call from our wonderful pulmonologist suggesting we admit Harrison to the hospital for some one stop shopping. She thought it would be the best option to get some answers. So we headed off to Egelston for a few days of therapy, doctors, labs, and tests. We got home Friday evening with the great news that his MRI was perfectly perfect in every way. They diagnosed him with hypotonia and now he is set up with physical therapy, occupational therapy, and speech therapy. There is some lab work pending that is testing for any genetic abnormalities that might be causing his hypotonia, but this is highly unlikely. It was very surreal being a parent in the hospital that I work at. It was also surreal and frightening a few times to hear the doctors discussing various syndromes they had to rule out. Syndromes that I know too well and are my worst nightmare. I have a small taste of the fear that my patients parents face everyday, and it is their reality.
Harrison did amazing and enjoyed all the attention. Even during his lab work and iv sticks he only grunted and then smiled at the nurses afterwards to assure them he held no grudges. He is just the sweetest little guy and we were so proud of him. We are very glad to be home and have a plan and peace of mind. We are so thankful for grandparents, friends, and lots of prayers.
Please be praying that Harrison will get stronger, and that his swallowing will improve and we will be able to avoid tube feeding (this is the next step if he does not improve). Also pray that the lab work comes back negative, which we expect.
We are so thankful for our gift, Harrison.

Mary Poppins

For Payton's birthday back in December Nana and Kiki bought her tickets to see Mary Poppins at the Fox Theatre. We have really been looking forward to it especially as the date grew closer. Payton began telling everyone where she was going. We went to brunch first where she had some delicious pancakes and got to see Uncle Matt. Then we headed down to the Fox. In my mind I had wondered how she would react. She has loved the movie Mary Poppins since she was 18 months old. She used to sit and watch it over and over when Claire was first born. I had tried not to tell her too much about the theatre or what a musical is because I wanted her to be surprised. Well, she did not disappoint my expectations. She was in awe to say the least. She made sure we were in our seats 45 minutes before the show started and did not want to walk around. She was ready to see Mary Poppins. When the show started her mouth fell open and she said "she is real mommy." Her mouth did not close the entire first half. Nana and I teased that she was going to catch a fly. She still is talking about it and tells everyone "they were real." It was a great day. I think I spent more time watching her reaction than the show. Thank you Nana and Kiki for letting me tag along on her birthday present.

Carnival

Nana came to spend sometime with us this past weekend. We went to Kiki's school for a carnival. The girls had a great time playing the games being with Kiki and Nana. Nana even won us some brownies to take home in the cake walk.

Fun with the Darley kids

We have had a couple of fun playdates with the Darley's. We first went to the Aquarium and then to the Peachtree Dekalb Airport playground to watch the airplanes. Both of them were a lot of fun. The girls like being with their "new" friends. They think it is fun that there are two Paytons, a Peyton Darley and a Payton Gadd. To make it even better there is a Claire Gadd and a Anna Claire. My girls love this! They are sweet friends.

Molly Ryan Goforth

Our best friends had their third baby girl on March 30th and I got the privilege of driving up to Asheville the day she was born to see her. Mom and I dropped the girls off at Nana's for an afternoon of fun while we drove to surprise Catherine and Molly Ryan. She is a beautiful baby and it felt so good to hold her in my arms and celebrate this special day with my best friend. I love holding a newborn baby and marveling at the miracle that they are. After a short visit we drove back to Nana's for a quick bite of dinner before heading home. It was a great day!

Spring Break 2010

Over spring break we went to the lake. It was fun! We had the best time watching the kids be kids. They played outside from after breakfast until bedtime. They got dirty, sweaty, wet in the sprinkler, and messy from popsicles. The weather was a taste of summer. It was even warm enough for a boat ride and for Sarah Grace to jump in the water. Harrison had fun too with the extra attention, everyone left the lake feeling loved.