Saturday, January 17, 2009

Just some pictures for a boring Saturday...

these are more pictures from last week in the playroom. I just thought they were cute...
i can't believe how much of a "kid" kenzie looks like sitting at the table with a crayon in her hand. She had zero clue what to do with it but boy I really can't wait till I can sit and color with her!!!!! We also tried playdoh. She took one feel of the stuff and dropped it immediately. She hated the feel of it. Im starting to think she does have some very slight sensory issues. I mean what kid doesnt like to touch playdoh????

Friday, January 16, 2009

Happy Birthday To Me!

First, thank you for all the birthday wishes! Kenzie is feeling all better. Shes not snotty or anything anymore. Jordan is busy trying to convince the doctors here to get her off isolation as soon as possible. It's pretty boring stuck in this room!

The big news of the day is that Kenzie ate! Well sort of... They started this morning dipping her nuk brush in stage 1 puree carrots. She had a few gags and one vomit BUT she opened her mouth for every "bite", and voluntarily swallowed each time! She even swallowed within their 30 second time period. What really shocks me is that not only is she taking the carrots but shes closing her mouth and you can actually see her taste it. For months we have given her food and she takes her tongue and moves it all the way to the back of her mouth so it doesn't ever touch the food (almost like when you're at the dentist and you don't want to taste the stuff they're using in your mouth). She usually exerts such effort to get her tongue away from the food.

Well, guess what?!? Jordan convinced them to let us go out! Kenzies still technically on isolation IN the hospital but shes allowed out for her TLOA since she looks so healthy! So we literally ran out the door in the middle of me doing this post to go to dinner. We went to Roys Hawaiian Fusion. It was delicious :-) So for the next few days we literally have the best of both worlds. Kenzie still has her own private spacious room. All therapies will be done in here and when we go out she must wear a mask. Shes not allowed out of her room in the hospital but we can take her out! Its terrific!!!!

Back to her feeding... so not only did kenzie swallow but the behavioral psychologist said to us that Kenzie "surprised me. I did not expect this kind of results from her so quickly" If she continues in this route the next thing they will do is up her "bite number" in each session. Right now shes at 10 so maybe they'll go to 15 or 20. They are keeping her on the Nuk to help desensitize her mouth. Eventually they will move to a spoon but the Nuk helps illicit a swallow since Kenzie really isn't coordinated enough to do it on her own yet. What they really want out of her now is to hopefully get her more comfortable. She still screams and cries a lot in her sessions and we are hoping to have that go by the wayside.

So... all around it wound up being not such a bad birthday. Two years in a row now we have been in the hospital on my birthday so I am hoping this does not become a trend! I'm sure we all know what my wish is...

Thursday, January 15, 2009

Surprise Visit!

As I was getting Kenzie dressed this morning there was a knock at the door... it was Jordan! he came a day early!!! Normally i clue into Jordan's surprises but this time he actually had me. Kenzie was so excited to see her daddy. Kenzie's first RSV test came back negative and her cold is already subsiding but we will be in here at least until Sunday. The room itself is really great but being stuck in here all day just stinks.

All of Kenzies therapies came to us in here and even though she wasn't feeling great, kenzie did amazing! After slowing down and using the nuk brush the last few days they have told us that tomorrow we will start dipping her spoon in food during breakfast. We know that this is when the problems will start but at least we now feel like we are really on our way.

After a week at KKI, I can safely say kenzie is getting better with more people and has already made some progress with allowing people into her mouth. Also today she made her daddy's trip worth waking up at 430am... she started hugging us! Its so cute :-)

I will go sleep at the hotel tonight and Jordan will hang out with Kenzie. Hopefully shell have a quiet night. We will let you know how the food goes tomorrow!

Wednesday, January 14, 2009

The hits keep on coming...

Kenzie got sick today. She developed a cold that got worse and worse as the day went on. By the end of the day her nose was running, her eyes were all puffy and red, and there was no denying it. The hospital decided to put her (us) on contact isolation. What that means is that all therapies will take place in her room. She is not allowed out of her room at all and not allowed to leave the hospital. We will not be able to see her therapies because there's no 2way mirror in here and everyone that comes in looks like theyre in a hasmat (spelling?) outfit. We think she'll be here at least a week but I dont know until i talk to the doctors tomorrow. The reason for all of this is because its RSV season. RSV is a pretty serious and highly contagious respiratory virus. I highly doubt she has it but they really dont like to take any chances here at KKI.

Even though we now have our own room they still will not allow 2 parents to stay overnight so when Jordan comes this weekend I guess Ill go to the hotel. The only plus side to this whole thing is the fact that we have a private room for probably a week. But kenzie has really loved crawling out of her room into the hallway to see all the staff and her door must now be kept closed. She also really grew to love Kennedy (the other little girl in our room) who leaves next Friday. Kenzie goes searching for her and I feel so bad that she may not get to really see her before she gets discharged. Ill post a cute picture of the two of them tomorrow since Kennedys mom said she didnt mind if I showed her face.

ok going to sleep since kenzies actually quiet now...


Hi everyone,

We didn't get to start trying a "dipped spoon" yesterday like we had thought. The therapists felt Kenzie wasnt ready. They use a tool called a nuk which is almost like a brush to get kids to swallow. OT and ST cant get Kenzie to open for the Nuk without her gagging or screaming. So they all felt that we are going to do feeding therapy sessions with the nuk until she opens for it. So right now a session involves the Nuk brush being put up to her mouth. The therapist says "1, 2, 3, open" and hopes that kenzie will allow her to brush her tongue with it. Right now Kenzie has allowed it once out of maybe 30 tries. All of the other times she cries, but the good thing is that she only gagged and vomited once! When she cries they gently turn her head back to midline and wait for her tongue to move down. They then take the brush and run it along her tongue and tell her shes done a good job. She gets to play with her toys a little then and we try again. We are really hoping that Kenzie will figure out quickly that the Nuk is not scary and will accept it. Once she does consistently, they will start with the dipped spoon... always seems like its a step back before we can go foward.

As for separating, Kenzies been doing very well when i leave her in the playroom. Unfortunately she is still not liking her Speech and Occupational therapists. She cries for most of the sessions. Partly I think its that shes so tired with this rigorous schedule and her lack of sleep. She has a hard time falling asleep at night because of the lights, noise, and action in the room and really only has time for 1 nap. We think also she is getting a cold now (again) and that won't help anything.

Onto the good stuff... we've had a great few days with Grandma Daryl and Grandpa H. We've gone out to some dinners and last night therapy dogs came to the hospital. It was so much fun to see Kenzie happy! I think she really misses Chubby as she was holding out her hands to all the dogs and was trying to pet them.

I even gave up a little more control over Kenzie and took a break for the first time in 14 months. I let Kenzie's grandma sleep at the hospital so I could go to the hotel at night and guess what??? Kenzie's still alive! Those who know me get the joke. Because of everything with Kenzie I have always been petrified to leave her anywhere overnight especially in the hospital. So i did do it on my own terms, I waited till she was in bed at night and made sure I was back when she woke up... but she did have a solid 10 hours without me.

Kenzie's napping now and then has another meal at 330. We will grab some dinner after that and say goodbye to Grandma (Grammy) and Grandpa H (pop pop - as skylar calls him) Then in just 32 short hours Jordan will finally be here!!! We really can't wait... seeing him on webcam at night just isn't enough.

typical to my life my computer for some reason stopped allowing my little camera chip to work so i cant upload any pictures other than the ones from my phone. the ones you see above are from yesterday. hopefully ill get a card reader and be able to upload some better ones soon!

Tuesday, January 13, 2009

Tuesday Morning

I forgot to mention that we have been switched to a new room! We are now in a triple. The triple room has up and downsides to it. The upside is that it is a lot bigger and has a bathtub right in the room for the kids. The downside is that now there are 3 kids and 3 parents which leaves much more room for crying and noises during the night. I have been having a very hard time getting Kenzie to go to bed before 930. There is just too much going on in the room. Kenzie is acclimating though and has made a new best friend. The little girl in the room (ill call her KJ - because those are her initials) is just tooo cute! Kenzie follows her around and looks for her whenever we come back. If she sees her down the hall she darts off to get her. Its really so cute! We are sad because KJ will be discharged on the 26th of January.

As for Kenzies therapies, we have had ups and downs. She has done remarkably well with her feeding therapist. Kenzie takes almost every bite off of an empty spoon and in about a half hour will start trying a spoon that is dipped in food. We expect that this is where their therapies will really start. Before this theyve been evaluating mostly. As for OT and ST therapies, those have not been going well. Kenzie has total stranger anxiety and hasnt had time to get used to the therapists. She mostly screams, cries, gags and vomits the whole sessions. Im really hoping she will get used to them and maybe theyll actually be able to get in her mouth within a week or so. Its hard because she doesnt see them as often and therefore isnt very comfortable.

Today I came back to pick her up from the playroom and almost freaked out when I didnt see her in there. I found out Kenzie went on a buggy ride... without me! I guess Kenzie will do anything that her friend KJ does and since KJ was going... Kenzie followed. When she got wheeled around and i saw her I was so happy I was jumping up and down! She was smiling, holding bunny blankie, dancing, and having a great time. Most importantly, she was having a great time without me, which is very important to them here.

I am going to put together a kodakgallery of pictures so far and will send it out hopefully later. Please note that any other kids or therapists in the photos will be blurred out due to privacy issues. Ill also keep you posted on how she does during lunch with her first little bit of food.

Sunday, January 11, 2009


Let's see, Friday we ended on a pretty bad note. We found out Kenzie was worse off than we had thought and it was upsetting. Yesterdays morning session was more of the same but then at lunch she surprised us! Kenzie only cried when she first entered the room. After that, she played with her therapist and really started to have a little fun! Grandma Eiee watched Kenzie for a few hours after lunch so I could go back to the hotel and take a nice shower. When I came back Kenzie had "dinner". Again she did so well! The therapist told us that because she had 2 great sessions playing we could start introducing a dry spoon this morning. Kenzie graduated 1 step!

We took some TLOA (timed leave of absence) for dinner and went to Outback and then tried again to get Kenzie to bed early. I need to switch her whole schedule here because they really only give her time for 1 nap. Also, Kenzies always gone to bed pretty late and woken up around 9. Here she needs to be up by 8 at the latest. Last night again I put her in her crib early but she didn't fall asleep until almost 930. On the positive, we got our web cam working and were able to video message with jordan. It was so fun as the 2 of us just left it on for over an hour as we did our thing. It was almost as if we were talking to each other from different rooms of the apartment. Kenzie got so excited to see her daddy. she was waving to him and giving him stinky face. Our skype name is "amymkerker" if you want to reach us.

This morning Kenzies first meal with a spoon went horribly. She refused every bite and screamed the whole time. She also gagged a few times but did refrain from vomiting. After her meal Grandma Eiee, Kenzie and I went to a place called Jimmy's for breakfast in Fell's Point. It was sooo good! I'll definitely be back. Then it was laundry and time to say goodbye to Grandma. She went back to take care of our other baby (Chubby) who I hear has been very bad. I think he knows something is up. Tracee, thank you SOOOO much for watching him and putting up with his "crap" (no pun intended). In a few hours Grandma Daryl and Grandpa "H" will be here. They will stay till Wed and hopefully pass the time before Jordan can finally come on Friday.

We just got Kenzie's schedule for tomorrow and she will be busy. Here is the rundown:
830: Meal
930: OT 1030: Speech and Language
1130: meal
(hopefully a nap in between)
330: meal

Somewhere in there I will have a meeting with the behavioral psychologist. she is the one who gave me the lecture and will most likely give me more time blocked off in kenzies schedule. I will have set times I have to leave her in the playroom with other adults to get her more used to being separated from me.

I have not been able to get onto youtube from here to link to the videos Ive been taking but if you want to view any you can search my videos by my username at "digitalelff" I am labeling all meal videos with the date and mealtime. They are mostly boring to people not interested in this stuff but for those that really want to see what they do and Kenzies progress they are there.

Ok more later or tomorrow! We love reading your messages so keep them coming. I am sorry i havent been good yet about returning phone calls and emails but I will get to it... promise!