Friday, January 23, 2009


FINALLY! We haven't had Internet access in 2 days here and anyone who knows me knows that's like total torture! Since I last posted we have had a lot going on.

Feeding therapy has gone better. They introduced pears and I guess Kenzie doesn't like them. She had 2 not so great meals Wed afternoon with them and then yesterday morning Kenzie was over it. She decided she wasn't letting those pears in her little mouth. So yesterday at breakfast she had what I would consider a standoff with her feeder. They put the pears up to her mouth and she wouldn't open. Kenzie sat for a full 30 minutes (the length of her session) with her mouth closed to the pears. KKI does not force feed so they will wait a kid out and usually the kids generally get bored and give in. Kenzie has a stubborn nature I guess and literally ignored the nuk. When she moved her head the nuk with the pears followed but she literally didn't look the feeder or the pears in the eyes. She did however get a laugh out of me when 24 minutes in she decided to start waving to the data collector in the room. It was really funny but because she was not doing what she was supposed to, the collector had to ignore her. Kenzie didnt care though and went on waving. 30 minutes passed and Kenzie won the battle. That's a really long time for a 14 month old to sit and do anything for so its amazing she won. Since then the team switched back to carrots and shes not doing great but at least is taking some bites. They will reintroduce pears soon and Kenzie will have to learn to like them.

After breakfast we had our steering meeting. This is a meeting with Kenzies whole team (medical and therapy). They access Kenzies progress and discuss where they think they can take her over the next 6 weeks. As for kenzies weight they told us that a normal baby of her age gains about 9 grams a day. kenzie has been averaging 12 so shes doing terrific. The allergist here wants to treat Kenzie like a new baby and stick mostly to introducing yellow veggies, rice, and fruits until we know what she can digest. In therapy kenzie is known as a "passive refuser". What that means is that she does not hit the feeder, or throw her food off the table, bite, etc. Kenzie takes a different approach that is more manipulative. They told us that Kenzie is "learning their game and testing them at every step" Apparently my child is advanced and using manipulative measures they say most 2 and 3 year old demonstrates. Lovely right?? I guess I have a lot to look forward to when shes a teenager. They did mention though that the team loves a challenge and would rather this. Their goal for Kenzie is for her to leave here taking 25% of her needs by mouth. It is not what we were hoping for. I understand that they can't get high calorie foods into her and therefore are limited by how many calories they can give her by mouth but at the same time, its just not what we wanted to hear. Her OT and ST therapy sessions are going to work hard at getting Kenzie to take drinks by mouth and start to learn how to use her muscles to chew.

Medically, Kenzie is not doing great. She has been very swollen again. It is getting to the point where we are pretty concerned. Luckily, today is our appt at University of Maryland with the doctor that put in Kenzie's stents. We are assuming he is going to want to do a venagram(sp??) to study her vessels and make sure there are no other blood clots. I guess I will have more to report on that tomorrow. Also, Kenzies labs came back from the other day and her IGG level is really low again. I think we are going to tell the doctors here that regardless of whether this immunization they gave her 2 nights ago will work, we want her back on her IGG infusions. We can't afford for Kenzie to get really sick while we are here as it would set her progress back majorly. The immunologist here is wondering why she is suddenly spilling out all of her antibodies again but realistically no one has ever been able to figure that out (along with all her GI problems) and we can't afford to take risks.

I don't think I mentioned that earlier this week we got moved out of isolation and into another room! We decided not to go back into the 3 person room. Although that room is so big and has lots of room for Kenzie to play (not to mention its own bath), it is very noisy at night. One of the children cries a lot and it keeps kenzie and me up a lot. We felt it was better to have a smaller room with someone who keeps the sort of hours we do. Luckily for us a new boy started the program last week and he sleeps 12 hours every night! So, for the last few days it has really been an ideal sleeping situation. Last night I think Kenzies swelling was making her uncomfortable so she woke up a few times but for the most part this room is totally quiet from 830pm - 7am.

The program is really picking up and another little girl "L" started 2 days ago. "L" loves! Kenzie. Kenzie is totally enamored by her and wants to do whatever shes doing even though "L" is almost 4 years old. It's really so cute! In about an hour Jordan will be here for a whole week which I am so happy about. Its been a really rough week not to have him here with me. Also, tonight Aunt Courtney, Uncle Jon, and baby Urfrig #2 are coming to visit! We can't wait to see everyone and hope that we have a fun weekend. Ill hopefully get time to post tonight or tomorrow after we go see Dr. Haskal.

Hope you all have a great weekend and keep the emails coming! Even if i don't get a chance to answer them quickly I do read them and will respond. This lack of Internet thing killed me!

PS - Jordan is bringing a card reader today so Ill finally be able to upload pictures again and make these posts a little less boring!

1 comment:

Aaron said...

Hey guys, let me know how the venogram goes.