Out of Solitary

Kenzie's isolation restrictions were lifted the morning... WOOHOO! She is 100% better and we were all getting cabin fever in this room. It means we can roam about free again and have Kenzies therapies in the regular room that has an observation window.

What we have seen is that Kenzie does MUCh better in her feeding sessions when they are not in our room. Here we think she freaks out because we have to leave her with strangers as opposed to downstairs they take her to a new environment.

Today we had a new feeder and Kenzie did really well! Again it was carrots on her Nuk brush. For those who want to know what a Nuk is... that's what the picture is of above. Kenzie gets two, 5 bite sessions. What that means is that the feeder says "kenzie 1, 2, 3, enter" and puts the nuk with the carrots in kenzies mouth. If kenzie does not open right away, the feeder will put her hand on Kenzies jaw to guide it to the Nuk. Once Kenzie gets the food from the Nuk the feeder says "Good job kenzie... Good job taking your food!" Then they give Kenzie a second or two to clear her mouth and say "Kenzie open up and show me your mouth" Kenzie at first did not understand this. They showed her a bunch of times and she still didn't get it (shes very young to just understand what they want her to do). Eventually after a few sessions they did a little finger push on her lips to get her to open her mouth and within a few times she got it. Now after a few days, the second they say this to her she thinks its a game and opens her mouth so wide and proud! Sometimes she even does it without them telling her to. When she does this in the allotted time, the 2 people in the room cheer for her and then the feeder reads 15 seconds worth of Dr. Seuss books (because its her favorite and she really responds to them). She has to do 5 bites and 5 opens, then she gets a break and then another group of 5 and 5. Their ideal time is for kenzie to do each bite within 30 seconds. As of today she was doing it even faster than that. She had some gags and usually averages 1 vomit a session but shes really doing well. Also, a goal of theirs was to get her crying down a bit. I think being in the room the last few days made the crying worse... today in the feeding room she barely cried at all! She was having fun with the feeder, smiling, laughing a little and totally interacting! Her dinner session went so quick i think it was over in like 8 minutes!

Jordan and I have asked that tomorrow they change something because we really don't want her having time to just relax. We want to get the most out of this 8 weeks. So we asked that either they try a new food (we've only been using carrots and want her used to a variety of tastes), or up her bite count. We'll find out in the morning if this will happen.

Other than that, the weekend was pretty uneventful. Jordan left at 5 today and although we were so sad, at least he left on a positive feeding note and we know he will come back Friday for a whole week! Ill be here by myself for the first time for the next few days so I'm not sure how much energy ill have to post but I will do my best.

Thanks for checking in and of course for all of the great comments! :-) I wish I had done this a year ago when Kenzie was first sick. Its going to be a really nice journal for her to read one day if she feels like it.

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????

Happy Birthday To Me!

6:00pm
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.

8:13pm
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...

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!

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...

Wednesday

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 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

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!

Our Address

For those that have asked:

Our Address here for the next 8 weeks is

Kenzie Kerker
c/o Kennedy Krieger Institute
707 North Broadway
Baltimore, MD 21205

Day 2

Today was as busy as yesterday and we are not even totally underway yet. Kenzie had her first day of 3 "meals". She is scheduled for the early block which means her meals are at 830; 11:30; and 3:30. She also had Speech Therapy at 10:00. Last night Kenzie decided she didn't want to sleep. That meant I didn't sleep either. We need to get her on a better schedule as this little sleeping beauty is used to waking up at 9am if she feels like it. Here she will need to be up by 8 at the latest daily. I have now had her in the crib for an hour trying to get her to go to sleep earlier but Kenzie has a mind of her own and at 8:49pm is still playing (even though she had only 1 short nap).

I also met with kenzies pediatrician here, her behavioral psychologist, and her social worker. We found out that unfortunately they think they are going to have a harder time than they anticipated with kenzies feeding. They thought getting her to swallow would be the hardest part. It turns out that they now feel it might take them a few weeks just to get Kenzie happy being in a room with the therapists. Because of Kenzies medical history, she and I have become the best of buddies. Kenzie and I go everywhere and do everything together. She is not very trusting of people and I definitely coddle her. I am no longer allowed to do that. A big part of their therapy is getting Kenzie away from me. I watch from another room. Today they took Kenzie into the feeding room alone just to see what toys she liked. She completely freaked out and screamed most of the time. She caused herself to vomit and got hysterical. From now on I am only allowed to offer Kenzie "tough love" If she cries because something is wrong or she is hurt I can go to her but if she cries because she just wants me, or isn't happy I have to ignore her. The therapists say she must learn that she will not get rewarded for "bad behaviors"

I guess because I am so nervous about trusting anyone with Kenzie, I have actually hindered her potential progress here. It's upsetting but hopefully we will both adjust. This weekend Kenzie just gets 3 meals a day. They wont even try to feed her yet but will take her in a room and play with her (without me). Hopefully we will have some time to travel outside these walls and rest a bit.

Welcome to Kennedy Krieger

Well, we are here and it's been a busy day! We had evaluations with Speech Therapy, Occupational Therapy, Nurse Practioners, and of course feeding therapists. Feeding went as we thought it would. I had to "feed" Kenzie and she showed them what she could do. She cried, gagged, clenched her teeth, and then vomited (all in about 5 minutes). I don't have access from my computer yet but hopefully tomorrow I'll post a video.

The room is TINY! Again, tomorrow hopefully Ill be able to upload photos. We are trying to switch rooms to a bigger 3 person room tomorrow too when someone gets discharged. The people who work here are really really nice.

Right now its about 9:30 and I am obviously way more tired than Kenzie who is sitting next to me wide awake! Ok... hopefully tomorrow will be a more interesting post. I think we have an address too here so I'll make sure I put that up. Gnight!

Baby Girl...

Our daughter Kenzie suffers from severe oral aversion as a result of her complex medical history during the first year of her life. She is 100% dependent on a feeding tube and refuses to eat by mouth. Despite months of intensive home therapy, we've been unable to get her to eat. We've compiled a video of Kenzie at her best and worst. Some of the photos are hard to look at but to us its truly inspiring to see how much she's suffered and how far she's come.

In the next post you can find Kenzie's complete medical story from birth. Our hope through this blog is to not only detail Kenzie's experiences at Kennedy Krieger for our friends and family, but to possibly help another family whose child suffers from similar oral aversions as Kenzie.

Kenzie's Story

This post is a long one so be forewarned.

Kenzie Jade was born November 5, 2007. She was full term and able to go home normally with her parents (us), Amy and Jordan. From day 4 of life Kenzie had trouble digesting breast milk. She would vomit most of her feeds and by two weeks old she had gone from her birth weight of 6.2 lb to 5.8 lb. Kenzie was then admitted to the hospital for "failure to thrive". Between 2 - 3 weeks old, Kenzie's weight plummeted to 5.0 lb as she started to have massive diarrhea. At 2.5 weeks old the doctors at Schneider’s Childrens Hospital in Long Island put in Kenzie's first NG tube (a feeding tube that goes in through the nose), performed an endoscopy, and took Kenzie off breast milk and switched her to a specialized formula. Kenzie did well and was discharged from the hospital 5 days later with her NG tube in place. Over the next 2 weeks Kenzie really responded and her NG tube was pulled. At this point we thought the horrible stench of her new formula was the worst thing we'd have to deal with. She drank her formula by bottle and thrived.

At about 5 weeks old her health started to fail again and she was back below birth weight. The NG tube was put back in and a week later at 6 weeks old, Kenzie was readmitted to Schneider’s. On Dec 29, 2007, Kenzie underwent a surgery to place a broviac line into her vein. The broviac line is a special type of IV that’s able to provide TPN (total parenteral nutrition). Although TPN was able to keep Kenzie alive and provide her with the calories she needed to thrive, it carried many potential complications. We had her transferred to Columbia Children’s Hospital during this admission where she underwent one more surgery to insert a different broviac line. Recently, I've looked back at emails from this time and I realize that again, the way we got through this difficult time was that we really believed this would all be over within a few days. A month later we went home.

We managed Kenzie's TPN at home for 7 months. During this time Kenzie had a few colonoscopies, a surgery to insert a GTube (a more permanent tube to feed her straight in her belly) and she stopped eating by mouth. Right around her 3 month birthday Kenzie started refusing the bottle. She would force herself to gag and vomit when we put it near her mouth. We began intensive feeding therapy but Kenzie always got worse rather than better. Time passed and Kenzie was never able to tolerate more than 7 ounces a day of the formula they had her on. She was hooked up 24 hours a day to her GTube and 10 hours every night to her broviac line. We also noticed swelling in her face which became progressively worse. Kenzie was in and out of the hospital for rule out line infections (every time she had a fever of 100.4 or higher - which happened often... she was automatically admitted for 48 hours) from January thru June.

On June 6, Kenzie’s swelling was so severe her face was unrecognizable. In addition, she also had a fever of 103.8. We took her back to Columbia and she was diagnosed with SVC syndrome. SVC syndrome occurs when the main vein(superior vena cava) that leads to the heart is completely clotted off. This is extremely rare in infants and is a life threatening complication of the Broviac line. In other words, the very treatment we needed to keep Kenzie alive was killing her. Kenzie was transferred to the ICU and because she was so swollen she was kept intubated for over a week. She had 4 interventional radiology procedures in the interim, and on June 13, 2007 she had 2 stents placed to keep her veins open. While in the ICU, fluid accumulated around her lungs requiring a drain. Following her second procedure, Kenzie’s blood pressure and heart rate dropped. Blood pooled around her heart(requiring a heart drain) and while she was being wheeled back into the ICU she started to crash. Thanks to the great doctors at Columbia, they were able to save Kenzie's life yet again. Her swelling remarkably subsided and she went from a grand total of 11 tubes in her tiny body down to two. Kenzie spent 20 days in the hospital and again went home again on TPN. However, this time she was on a different formula that, for the first time in her life, she was able to tolerate! For the next 6 months we gave Kenzie shots of blood thinners twice daily to prevent her veins from clotting again. A month after the nightmare in the ICU, and exactly 7 months after her first broviac line was placed, Kenzie was taken off TPN. She was finally taking all of her calories by formula through her GTube! Kenzie went in for another surgical procedure July 27, 2008 to have her broviac removed. She continues to gain weight slowly and steadily from formula now with only 1 tube in her (her GTube)! We give her infusions once a week of immunoglobulins because her immune system is weak. Kenzie still has no diagnosis, despite several colonoscopies, endoscopies, neurological and cardiologic workups, immunologist visits, genetic tests, etc. We are currently looking into a genetic disorder but tests always come back normal for Kenzie.

For months we have tried to get Kenzie to eat by mouth, but to no avail. An unfortunate, yet common and sad side effect of GTube fed kids is that become afraid to eat. She fights us when we try to feed her anything. She screams, cries, gags, vomits, and pushes us away. Kennedy Krieger Institute has an intensive feeding therapy program designed for children like Kenzie. They have an amazing success rate at getting these kids to eat. We know it’s going to be a hard 8 weeks as we need to stay inpatient at John Hopkins Hospital in Baltimore. However, we feel it’s our only chance to give Kenzie a normal life. This oral aversion she suffers from is not something kids "just grow out of". When left untreated, the aversion gets worse and the behaviors amplify. We are hoping that since Kenzie is so young (their average age is 3 for children in the program) she has a better chance at success. Our personal goal is to get Kenzie eating enough pureed foods that she only needs GTube feeds at night. Anything less will be upsetting, anything more would be a dream. So in the next two weeks we will embark on this journey and as hard as it’s going to be, we have faced worse in the last 13 months.

The Journey Begins

We found out today that Kenzie was approved by insurance to enter Kennedy Krieger Institute as an inpatient for 8 weeks. She will begin their intensive feeding program January 8, 2009.

We hope to use this blog as a way to keep everyone informed of Kenzie’s progress. We also know how hard it is to find information online not only about the actual treatment at Kennedy Krieger, but about feeding disorders, treatments and GI conditions. If this blog helps just 1 person get information that they’ve been looking for, we will feel it was worth our time writing. Please feel free to leave us messages here or email us. We'll try and do our best to update often and answer emails as quickly as we can but from what we've heard… they will keep us busy.