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!
Friday, January 23, 2009
Wednesday, January 21, 2009
Its been better... Its been worse
Yesterday Kenzie progressed in feeding with the volume they were giving to her. Instead of just dipping the Nuk brush in the carrots they now take a spoon, put the food on the spoon, level the spoon off and then take the food off the spoon with the nuk and give her that amount in her mouth using the nuk. They say that using the nuk helps take some work off kenzies plate. The nuk being pushed down on kenzies tongue helps facilitate her swallow (and maybe a gag sometimes too the way I see it). Kenzie is doing pretty well with the greater volume. She is having a little more vomiting but she isn’t refusing and is still enjoying her mealtimes. Today they changed things up even a bit more by giving kenzie pears. Previously we had only worked with carrots. Kenzie definitely made a face (almost like a sour face) everytime the pears touched her lips and had a few more spitups than normally but she didn’t refuse anything and did pretty well with them.
Medically Kenzie needs blood drawn for a variety of tests. For anyone who has followed Kenzie through her life knows that is a constant struggle. For some reason Kenzies veins are so easy to see but virtually impossible to get blood out of. They need like 17mls which is a little over half an ounce. Usually we struggle to get 2 mls (just to put it in perspective). We need the blood for immunology (Kenzie gets infusions of immunoglobins once a week because she has a weakened immune system), regular labs to test her protein level, and a few mls to test for a rare genetic disorder that a doctor in san diego just discovered. Yesterday a nurse who was supposedly a good stick tried for 40 minutes, finally got 1.5 ml and then it clotted (which means we couldn’t use it). Today we sat for another 30 minutes sticking her again and got about 4 which takes care of the immunological stuff but nothing else. I’m sure I don’t have to explain to you how Kenzie is when they take blood but shes done it so much that all she has to do is see the torniquit and she starts screaming. The screaming then turns to screaming and vomiting which then gets her all worked up and nothing we do can stop it till they are done. Its really sad. Now we have to make a decision on how we are going to get the rest. I am opting for an arterial stick (which means they go directly into the artery instead of a vein). The blood will come out much faster and we should be able to get what we need. The downside is that artieral sticks are painful. Personally I think some pain is better than the psychological torture of spending a half hour 3 days in a row being held down and stuck over and over while the blood barely comes out. I guess the final decision will be made later. To top the day off, Kenzie will be getting a Pneumococcal Vaccine. Some of you might ask us “but I thought kenzie cant get any vaccines while she gets IGG infusions I thought?” Well youre right. We are stopping her infusions for 4 weeks (which makes me VERY nervous) so she can get this one vaccine. They feel that her chances of getting pneumonia are greater than the risks of not getting her infusions for 4 weeks. We spoke to her immunologist in NY to make sure he was comfortable with this decision before we went along. So even though for 6 months we gave kenzie shots twice a day… I still hate it for her and feel badly that she doesn’t know this is coming later and that tomorrow shell probably get the arterial stick.
To complicate matters even worse, the GI doctor here just came and spoke with me about switching Kenzies GTube (the tube in her belly) to a GJ Tube. The GJ tube has 1 portion that goes directly into her stomach (the G part) and 1 portion that leads the food straight to the small intestine (the J portion). When food is delivered into the J portion, or the small intestine it makes it very difficult, if not impossible to vomit. They feel that she vomits too easily both behaviorally and medically and that eliminating the possibility of vomiting will make her progress in the feeding program much more significant. GJ Tubes are something Jordan and I have discussed multiple times over the last year. It has pros and cons. The pro of course is really only 1 thing: no vomiting. The cons are: It is a surgery to insert and will require intubation and general anesthesia. It sometimes breaks or dislodges and then requires another surgery. You cannot bolus feed through a J tube, which means she will have to remain on continuous feedings when fed through that tube. Continuous feeds are a problem because Kenzie now moves all over and I need to follow her everywhere with either her backpack or IV pole since she can’t do it herself. The J tube also requires a lot of maintenance. It needs to be flushed every 2 – 3 hours round the clock. That’s not so bad while we are here and have nurses that can help, but for me at home it just makes things way more difficult once again. So… Jordan will talk to the GI hopefully tonight and the two of us will have to make a decision.
Speech and Occupational Therapies went a bit better today but still she is not responding well with them. She tends to cry a lot. Without getting through to Kenzie during these, we will not be able to ever progress her food texture or get her to drink. I have tried to talk to her team about switching the locations of the therapies to her feeding room (she seems to like the feeding room a lot), or putting her in the same booster seat she uses but I don’t know if they will allow it.
Tomorrow is a big day as we have our steering meeting in the morning. The steering meeting will be where the whole team meets with us (Jordan via conference) and tells us their goals for kenzies time here. We also intend on letting them know our goals as well. I’ll let you know how that goes. Today and yesterday have basically sucked not having Jordan around to be apart of these conversations and to be here with me for the rough times but luckily he will be here Friday for a whole week. Ill try and update tomorrow again… the internet keeps going down here! Sorry for the long post.
Medically Kenzie needs blood drawn for a variety of tests. For anyone who has followed Kenzie through her life knows that is a constant struggle. For some reason Kenzies veins are so easy to see but virtually impossible to get blood out of. They need like 17mls which is a little over half an ounce. Usually we struggle to get 2 mls (just to put it in perspective). We need the blood for immunology (Kenzie gets infusions of immunoglobins once a week because she has a weakened immune system), regular labs to test her protein level, and a few mls to test for a rare genetic disorder that a doctor in san diego just discovered. Yesterday a nurse who was supposedly a good stick tried for 40 minutes, finally got 1.5 ml and then it clotted (which means we couldn’t use it). Today we sat for another 30 minutes sticking her again and got about 4 which takes care of the immunological stuff but nothing else. I’m sure I don’t have to explain to you how Kenzie is when they take blood but shes done it so much that all she has to do is see the torniquit and she starts screaming. The screaming then turns to screaming and vomiting which then gets her all worked up and nothing we do can stop it till they are done. Its really sad. Now we have to make a decision on how we are going to get the rest. I am opting for an arterial stick (which means they go directly into the artery instead of a vein). The blood will come out much faster and we should be able to get what we need. The downside is that artieral sticks are painful. Personally I think some pain is better than the psychological torture of spending a half hour 3 days in a row being held down and stuck over and over while the blood barely comes out. I guess the final decision will be made later. To top the day off, Kenzie will be getting a Pneumococcal Vaccine. Some of you might ask us “but I thought kenzie cant get any vaccines while she gets IGG infusions I thought?” Well youre right. We are stopping her infusions for 4 weeks (which makes me VERY nervous) so she can get this one vaccine. They feel that her chances of getting pneumonia are greater than the risks of not getting her infusions for 4 weeks. We spoke to her immunologist in NY to make sure he was comfortable with this decision before we went along. So even though for 6 months we gave kenzie shots twice a day… I still hate it for her and feel badly that she doesn’t know this is coming later and that tomorrow shell probably get the arterial stick.
To complicate matters even worse, the GI doctor here just came and spoke with me about switching Kenzies GTube (the tube in her belly) to a GJ Tube. The GJ tube has 1 portion that goes directly into her stomach (the G part) and 1 portion that leads the food straight to the small intestine (the J portion). When food is delivered into the J portion, or the small intestine it makes it very difficult, if not impossible to vomit. They feel that she vomits too easily both behaviorally and medically and that eliminating the possibility of vomiting will make her progress in the feeding program much more significant. GJ Tubes are something Jordan and I have discussed multiple times over the last year. It has pros and cons. The pro of course is really only 1 thing: no vomiting. The cons are: It is a surgery to insert and will require intubation and general anesthesia. It sometimes breaks or dislodges and then requires another surgery. You cannot bolus feed through a J tube, which means she will have to remain on continuous feedings when fed through that tube. Continuous feeds are a problem because Kenzie now moves all over and I need to follow her everywhere with either her backpack or IV pole since she can’t do it herself. The J tube also requires a lot of maintenance. It needs to be flushed every 2 – 3 hours round the clock. That’s not so bad while we are here and have nurses that can help, but for me at home it just makes things way more difficult once again. So… Jordan will talk to the GI hopefully tonight and the two of us will have to make a decision.
Speech and Occupational Therapies went a bit better today but still she is not responding well with them. She tends to cry a lot. Without getting through to Kenzie during these, we will not be able to ever progress her food texture or get her to drink. I have tried to talk to her team about switching the locations of the therapies to her feeding room (she seems to like the feeding room a lot), or putting her in the same booster seat she uses but I don’t know if they will allow it.
Tomorrow is a big day as we have our steering meeting in the morning. The steering meeting will be where the whole team meets with us (Jordan via conference) and tells us their goals for kenzies time here. We also intend on letting them know our goals as well. I’ll let you know how that goes. Today and yesterday have basically sucked not having Jordan around to be apart of these conversations and to be here with me for the rough times but luckily he will be here Friday for a whole week. Ill try and update tomorrow again… the internet keeps going down here! Sorry for the long post.
Monday, January 19, 2009
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!
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.
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????
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!
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...
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...
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...
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, 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.
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
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!
Friday, January 9, 2009
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
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.
Thursday, January 8, 2009
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!
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!
Sunday, December 28, 2008
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.
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.
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