Sunday, February 8, 2009


Picture 1: (from left to right): Carly, Me and Kenzie, Tracy, Lindsay, and Molly
Picture 2: When we got ready to go out Chubby thought he could come with us. He jumped up on the bed, over to the nightstand and got in Molly’s dog bag. He sat himself down and waited to be taken out. It was SO funny!
Picture 3: Chubby licking Kenzie
Picture 4 & 5: Kenzie’s excitement over seeing the dogs!
First let me say that I really have the greatest family and best friends ever! Kenzie’s Great Auntie showed up on Thursday to come see Kenzie with lots of goodies for Kenzie, Lilly, and Chance. We took so many pictures that I will have to put them in a few different posts since I can only do 5 at a time. Kenzie had so much fun with great Auntie. Friday night we went to a sushi place in Fell’s Point called Nanami. It was a little place with tasty fish overlooking the water.
Then Saturday morning my friends Carly and Lindsay drove here. After Kenzies lunch they asked me to meet them downstairs as they had something big they couldn’t carry themselves. As I cursed them in the elevator for bringing us stuff that we didn’t have room or need for, Auntie was laughing behind me. We walked outside and the best surprise ever was waiting for us. CHUBBY! They went to Long Island, got Chubby (our dog) and brought him here for the night!!!! I have missed him so much and was getting so sad that Kenzie stopped remembering him. Anytime I asked her about Chubby she wasn’t looking for him anymore like she usually does. I always feel like poor Chubby has gotten the shaft since Kenzie was born and feel so guilty so you can imagine how happy I was to see him. We took Kenzie outside to see him (and Molly, Lindsay’s dog) but I don’t really think she “got it” until later. Later, we took Kenzie to the hotel so she could play with the dogs and you can see from her face in the pictures with her on the bed just how happy she was! She loves her doggie brother!!! Carly’s sister Tracy met us again and we all went to Ra Sushi for dinner. The music was loud and Kenzie danced half the meal. The food was delicious and I hope to go back there more in the next month. Auntie slept at the hospital last night so I could spend the night with my friends and Chubby. She did a great job and I actually slept without going crazy over what was happening with Kenzie. This morning after Kenzies meal, we all went to Jimmy’s for breakfast before the dogs came to see Lilly, Chance, and Kenzie once more before leaving. I was so sad to see everyone go. I said to them that I actually almost forgot that we were spending 2 months in a hospital last night. It just seemed so normal and fun (minus Jordan not being here).
Kenzie’s OT and ST sessions are finally going great! Shes really starting to explore with her mouth and we are even seeing that progression out of her sessions. Kenzie has never been a baby to put anything in her mouth… no toys, no remotes… no food, nothing. Lately that is changing. Kenzie loves to taste edamame and does that whenever it’s on the table. Last night she saw a rock (yes, a rock) and tasted it twice much to my surprise. I guess I have to start watching her. She also will take a cup of water and pretend to drink it. As for feeding we are sort of at a standstill right now. Kenzies stage 1 purees from a jar were falling out of her mouth easily. One bite would take 3 scoops to keep in. She swallowed them easily but we weren’t sure if she was purposely expelling the food or if she lacked skill to close her lips tight enough to keep it in. They decided to experiment and use thickened puree from fresh foods. What we found is that with thick puree she keeps the food in much better but she now has a lot of trouble swallowing. I guess now she lacks the skill to move the food around in her mouth and push it back to swallow. Because of this, her latency to swallow (time) has gone up a lot. Also, now since she is not clearing her bite on her own most of the time, they are back to using the nuk after 30 seconds. Now her meals are taking much longer with the same 20 bites. Tomorrow when her Dr comes back I will ask which is really better for her… quicker meals where she swallows on her own and maybe we can up her bite count, but expels… or longer ones where she still needs a lot of help. I really don’t know the answer myself but I do like to know how they come to make that decision. The other thing is that Kenzie’s negative vocalizations have gone up a lot too. I’d really like to go over with her dr when this started happening… did it happen when we took out her incentive with the books?, or when we started with the thickened foods? I don’t remember myself but do know that at one point she barely whined and cried at all so if we can go back to the graphs and look into it, maybe we can switch something back since the team really wants her negative vocalizations at under 20% each session and right now we are probably at 90%.
All in all it’s been a great weekend and thankfully we have less than a month less here. You’ll see that I have pictures in the next few posts as I can only fit 5 per post.

1 comment:

Anonymous said...

hi amy, kenzie looks fabulous and i'm so glad you are both doing well! I'm happy that kenzie has been so responsive to all the therapies she is receiving and the surgery. How do you keep up with them all: OT, PT, ST, etc? I miss you and wish you the best. Can't wait to see you soon.
Denise P.