Wednesday, June 10, 2009

What a difference a year can make…

A year ago today was the start of the scariest weeks of our lives. I woke up to find Kenzie’s face had transformed into one of a baby I didn’t recognize. She had a fever of 103.8 and we rushed to the ER. Upon arrival, Kenzie was diagnosed with SVC syndrome. It was a life threatening complication of the central line that we were using to keep her alive. To see Kenzie looking the way she did that week can not be described in words. Her head had gotten so swollen that at 1 point, Kenzie’s ears were pushed forward, folded into her head. Kenzie was put in the ICU and kept on life support for a week. On Friday the 13th after Kenzie’s second IR procedure where her stents were placed, Kenzie’s heart had trouble pumping due to the blood filling around it. Jordan and I stood around helpless watching as doctors and nurses ran to her bedside. To remember this day and the whole week is heartbreaking, but to see where Kenzie has come is truly inspirational!

A year ago Kenzie was 7 months old. She did not roll over and did not sit up without assistance. She did not crawl. She was hooked up to 1 tube 24 hours a day into her stomach and another 12 hours at night. We carried her around followed always by an IV pole. She got shots twice a day that we administered. A year ago, Kenzie ate or drank nothing by mouth. Now, 1 year later it brings tears to my eyes to be able to say that Kenzie is rolling over, sitting up, crawling, cruising, and starting to try and walk! She says words like “Hi, Bye, Mommy, Dada, Car and Bunny” She eats! Kenzie now takes 90% of her calories by mouth (still purees, but it’s a work in progress). We are working to try and find ways to get rid of the tube but that may take awhile. Most importantly, is that our sickly baby has turned into the happiest of toddlers! With all of the illnesses and about 140 days of hospital stays, we are so so lucky that Kenzie’s brain has developed totally normally. We are even hoping to put her into some sort of 2’s program WITHOUT me this fall in LA.

Jordan finishes his 5 years of residency next week. He takes his test to become a board certified orthopedic surgeon on July 9, and we are set to move with the help of my best friend Lindsay, July 13. We have already gone out to LA and found an apartment and setup doctors for Kenzie. Our hope is that this next year is a new start for us. We wish for it to be free of hospital stays and massive therapy sessions. We will continue to work with Kenzie to get her to eat solids and take drinks like a normal toddler her age and to hopefully one day even enjoy mealtime.

Jordan and I think back to a year ago and we still wonder how we got so lucky to have the support of our family and friends. That night when we came out to the waiting room and saw everyone there… that you all had just showed up because you heard via the grapevine what was going on, it makes it harder to move. I’m not sure I will have time to update again before the move but we hope that we have LOTS of visitors next year and promise to update the blog from sunny LA!

Wednesday, May 6, 2009

video

Saturday, May 2, 2009

WOW! Long Time...






I can't believe it's been over a month since I've written here. So much has happened. We did in fact go away to Puerto Rico and Kenzie did terrifically! It was her first time flying and she was so good! I don't think we heard her cry once. The vacation was so much of what we needed and I wish we were back. We had a nephew Hunter Pierce, born on March 27 (the same birthday as his big sister Skylar). He is gorgeous! We also flew to a wedding in Buffalo with Kenzie. We are starting to prepare for our big move to Los Angeles and will be going out there May 12 to try and set things up.

As for Kenzie and her eating... we have switched things up considerably. Kenzie has been getting 5 "sessions". She gets 2 drinks sessions of 4oz formula, 2 times per day. She also gets 3 meal sessions of either 4 or 6oz depending on how filling the food is. We also now only give her 2 foods per meal instead of 3 and do not switch off foods. We give her all of her "hard" food so that she can work through it and then give her a preferred easy food after. Other than the fact that Kenzie now fights us really bad on the first bite, shes done really well. We actually just came back from our followup at Kennedy Krieger and they were totally shocked when they saw her eat. Kenzie had 6oz of easy food in less than 10 minutes... which is record time. They told us we should start to increase texture and let kenzie start to learn how to self feed. Protocol going forward will be using a junior texture food (ie... like a stage 3 chunkier food) with a puree easier food after. The last 5 bites of Kenzies meal I will have her help me bring the spoon to her mouth so she starts to get that idea. We have done this for a day so far and she is fighting us... but we have learned that if we can prevail for a couple weeks... it will get much better. Repeat exposure really makes a big difference in Kenzie's behaviors.

Medically Kenzie has her ups and downs. We are really happy to say that everything we have given Kenzie to eat, she has digested. For a kid that was on TPN for so long, it comes as a shock to Jordan and I, but a really happy one at that! We went to Kenzie's immunologist a few weeks ago and as planned, he decided to try stopping her IGG infusions to see what her body could do on her own. Unfortunately after skipping two doses and getting bloodwork repeated, we found out yesterday that we will have to restart them today. Kenzie's IGG level dropped way lower than what is considered normal. The doctor feels she is at risk of infections if we do not continue them. We finally got to see an endocrinologist this week. She does not think Kenzie has a growth hormone deficiency but did run a bunch of blood work to test. We should have the results back in a week. She did note that Kenzie's head is out of proportion to the rest of her body and told us we should be taking Kenzie to a genetiscist that specializes in bone growth syndromes and genetic disorders. When we last saw a genetiscist, Kenzie had not fallen off the growth chart so we didnt probe deeper but now we will have to. Kenzie's height is well below the chart and her head circumfrance is way above. More doctors... more tests, and we are sure as usual they will find nothing. Kenzie also had her first dentist appt! She has 11 teeth and 1 more about to pop through. The dentist said her teeth look good and even though she didnt eat by mouth for a long time, she is doing well.

Developmentally Kenzie has started to finally make sounds and even 2 words! For so long Kenzie was totally quiet. She never made a peep. Like everything else with kenzie, once she got going... she went for it. In a matter of two weeks, Kenzie started finally making sounds like "mama, dada, buoy boy, kakaka, and gaga" She also said her first 2 words "car" and "eye" It is so exciting and we love how noisy she is now! Kenzie still isnt walking but has now started to climb on things and loves to cruise with her little walker. Im going to find some pictures now to upload but for those still following and wanting to know mostly about Kenzie and Kennedy Krieger, Jordan and I are so so thankful to have found out about the program this early. People ususally spend years trying to teach their kids to eat before they hear about the program... we really believe that getting Kenzie there as early as we did has made all the difference. I'm going to take a video of Kenzie eating soon and I'll post it here because it truly is amazing to see one of her meals.

Hopefully I will post again soon!

Thursday, March 26, 2009

Kenzie at Zing Zang Zoom

video

pictures






Picture 1 & 2: Britney Concert with Leena
Picture 3: Kenzie trying to keep up with Cousin Skylar
Pictures 4 & 5: at the circus

Puerto Rico Here We Come!






Pictures from our last day at KKI
(The graduation outfit we put together for her)

Hi All,

This week has been busy as ever. We took Kenzie to the Barnum Bailey Circus Sunday. You can see from the video (it'll be up shortly) that she just loved it! We are still trying to work with Early Intervention to get her therapies set up and it's becoming a but frustrating as we have now been home for 3 weeks and are losing ground. Meals are hit and miss. We have some great meals but breakfasts especially are terrible. She refuses her first bite almost everyday and will gag and vomit at the taste of food. We can deal with the behavioral stuff as horrible as it is. But Kenzie's new thing that we don't know what to do about is that when she burps now half the time she will bring up a huge portion of her meal with it. It gets her very upset and then ruins the rest of the meal. We are strictly following protocol but because of the large amounts of vomiting and the diarrhea that rears its ugly head sometimes, Kenzie is still down weight and now about 75% tube fed (we had gotten to almost 50%). It's defeating and sometimes we want to just throw in the towel but we have to remember we didn't spend 8 weeks in Maryland to throw it all away.

on the positive side, kenzie has some new signs. She signs "drink", "eat", "sleep", plus all the others shes been doing. I have been packing furiously and I really hope I don't forget anything that's important for Kenzie. We are so so excited to go away. Hopefully a vacation will give us the much needed release we have been waiting 16 months for.

Our niece Skylar turns 2 tomorrow! Happy birthday Skylar :-) Also, by the time we get back from vacation she will probably be a big sister!!!!! We are hoping for an easy healthy delivery for both mom and baby. I can't wait to post when we get back. I'm sure we will have lots of cute pictures!

Hi All

Thursday, March 19, 2009

A good day...

Kenzie's meals have been getting better and better! Her mood is now terrific during them and she actually crawls over to her highchair herself. When we ask her what time it is, Kenzie makes the sign for "eat" and points to the cd player so we can turn on her favorite Britney Spears. For Jordan and I, this is such a special and great thing to watch. She actually has fun in her meals and we are starting to have hope that maybe one day, she will actually enjoy food.

Kenzie's vomiting has decreased significantly and the diarrhea is officially gone. She has been eating a wide variety of pureed fruits, vegetables, chicken, turkey, oatmeal, and rice cereal. Because everything has been so great, Jordan and I decided tonight to start introducing eggs. Eggs are huge for us because of the calorie and fat content in them. We have figured that 1oz of eggs is about 50 calories. If we gave Kenzie eggs twice a day that would be an extra 100 calories (great math right amy?!?)... what that translates into is 1.5hrs off of Kenzie's tube feeds overnight. Since she is back down to only 8hr20m on the tube as it is, another 1.5 hrs off would be amazing. We will obviously be watching her stools closely over the next few days as it might take awhile to see if she can digest the eggs but we are crossing our fingers and hoping it goes well. I will keep you all updated.

Every year Jordan surprises me with tickets to the circus. Last year because Kenzie was in and out of the hospital on an almost weekly basis we couldn't go. But this year Kenzie will join in our tradition and come with. I am so excited to take kenzie to the circus and can't wait for the days that Kenzie and I can take flying trapeze lessons together (no I am not kidding... pre-pregnancy I took lessons 2 or 3 times a week). Also, our vacation to Puerto Rico leaving March 28 is a GO! I can't tell you how nice for me to be able to post good things here :-)

More in a few days...

Monday, March 16, 2009

Kenzie Being Fed At Britney Concert

video

Kenzie Laughing

video

Long Time No Post

Sorry, I can't believe its been almost a week since I last posted. Actually I can believe it since it seems lately I don't even have time to sit down. Kenzie's GI bug seems to come and go. We went to her gastro and he told us it can take Kenzie weeks to recover from a simple stomach virus. It is definitely getting better but we still have bouts here and there. Her meals are hit and miss. She seems to refuse her first bite with me 90% of the time whereas never with Jordan. Her mood is generally good but the vomiting incidents are pretty high. We have opened Kenzie up to all of the foods she was getting before she got sick at KKI and she is doing well with the variety. I have also started to puree some foods myself as Earths Best doesn't make regular squash and green beans.

This weekend we went to the Britney Spears concert. Kenzie had a meal during it and it went really well! Kenzie LOVED the concert! She was bopping her head the whole time and stayed up till the end. For those who have been following... Kenzie is used to listening to Britney during her meals. Its part of her protocol because awhile back Jordan and i noticed that she danced anytime it came on in the car. As a joke the Behavioral Psychologist listened to us and put it on during her meal and from meal 1, Kenzie responded. One of jordans attendings had tickets in a box for the concert and let us take Kenzie. It was great!!!

I still have yet to put up the pictures from our last day at KKI but I will (hopefully). I just figured the video of Kenzie bopping to the beat was way more fun. We love being home again and are getting back into the swing of things. Last night I had the greatest surprise... my friends Lindsay and Carly threw me a surprise birthday/coming home party. When I spent my 30th birthday in the hospital with kenzie, we always joked how 31 would be a blowout because there was no way it could be as bad as 30. So this year when 31 was spent in a different state in another hospital, it really was no fun. Last night was so special. I really have the best friends and family ever! Thank you :-)

Lots to do before bedtime so I have to run but hope you all enjoy the videos

video

Tuesday, March 10, 2009

Getting Better

Kenzie is finally starting to feel better! We have had 48 hours of no diarrhea and she is up to full strength formula again. Tests for CDif and other parasites have come back negative. More importantly is that meals are starting to get better again. Kenzie is more willing to take her bites and is not gagging when she sees me present the spoon most of the time. We have had 3 meals (not in a row) where there was no vomiting at all! We still have her drinking water at her meals instead of formula but we have upped her puree foods back to 3oz. Starting today we have resumed "open variety" of foods. What that means is that we will represent all the foods slowly that we took away when Kenzie wasn't feeling well. I'm hoping within a week or 2 to be giving her everything we were. I spoke to our main feeder at KKi yesterday because I was having issues making Kenzie's rice cereal and oatmeal to the perfect consistency and she gave me some new ways to make it. The changes seem to have worked because there are no lumps in it and Kenzie is taking it the same way she takes fruit and veggies. They really are masters at pureeing foods there.

I have some more really cute pictures from her last day at KKI that I still have to post but I probably wont have time till tonight or tomorrow. Today we are going to see Kenzie's GI doctor here in Brooklyn and I will have to feed her 2 meals out of the house. hopefully they wont be terrible.

As for Kenzie's mood... it finally seems like we have her back. Yesterday she decided to get out of her post KKI funk and return to her happy smiley self. I'll update more tomorrow after the GI appt. Have a great day!

Sunday, March 8, 2009

More Pics...






Picture 1: My diploma
Picture 2: My friend Anthony (Miss Patti's son)
Pictures 3 & 4: Hard at work
Picture 5: I love my daddy!

Pics...






Picture 1: I love Miss Patti!
Picture 2: BFF Lilly
Picture 5: Wagon Ride with Miss Patti

Saturday, March 7, 2009

Home Sweet Home






Picture 4 & 5: Kenzies 2 main feeders
All pictures: Kenzie with some of her favorite KKI staff

Sorry I haven't posted an update but we have been busy here. I'm still working through unpacking all the crap we had being away for 2 months. Also, we are trying to figure out a good system to feel the most comfortable with feeding Kenzie here. Needless to say, we haven't sat down much in the last 2 days.

Kenzie's last day at KKI was mixed with emotion. Poor Kenzie didn't smile all day because she was in a Benedryl hazed stupor from the allergic reaction Wednesday night. Luckily the hives haven't returned. We probably will never know what caused it but as long as it doesn't happen again, I guess it doesn't matter much. We had breakfeast, a meeting, lunch and then packed up to go. As much as all I wanted to do was be home, I knew I was going to miss the friends I made there. I also knew Kenzie would miss how much fun she had everyday with all the other kids and in the playroom. I wish she had been in a better mood for her last day but what can you do.

More importantly Kenzie's stomach is still a mess. She is still having constant diarrhea and has now lost a pound and a half which is almost everything gained while we were away. We had to change her clothes Friday night 3 times while she slept because its so explosive that it just goes everywhere. To make matters worse, she is again vomiting up almost everything she eats. Meals are very trying and we are frustrated. We think its behavioral based on medical which means that Kenzie isn't feeling well so she really really doesn't want to eat. She forces herself to gag and vomit every time we present food to her. We are plugging along though and doing what we are supposed to... giving her every meal and not allowing her to win. We spoke to Kenzie's GI doctor and he said if we can't get a handle on the diarrhea by Tuesday, we will have to come in. We also went to her pediatrician who gave us tubs to collect her stool. We will test for CDIF, rotavirus and a bunch of other bugs she could have come down with while at KKI. Unfortunately, all these tests take days to come back so we just have to sit tight now. Of course our big fear is that this isn't something that will go away and somehow Kenzie has reverted to the issues she had since birth. We really are hoping at this point its CDIF because at least then we can treat it and move on. Our vacation to Puerto Rico is now questionable as its only 3 weeks away and if she is still not stable, its not even an option to go away.

The other bad news is that after months of Jordan and I worrying about Kenzie's length and being told to hang in... our pediatrician is now concerned. Kenzie is 16 months old now and has only grown 9inches since birth. She has fallen off her own curve and is not even close to the charts anymore. He wants us to see an endocrinologist. It's probably the only type of doctor Kenzie has avoided seeing so far. Another day, another worry...

Kenzie has been in a funk since we got back. She is cranky and whiney. I think its partially that she got so used to seeing her friends all day long at KKI and partially that she isn't feeling well. It doesn't help that I don't want to take her out now because I hate to think if she has something contagious, we would spread it.

I guess I should try and find some good news so that will be the fact that we are home!!!! Jordan and I are finally sleeping in the same bed together after 8 weeks apart and we have Chubby back. Kenzie loves having him around. I have a bunch of pictures to put up so hopefully I'll find time and energy to do it tonight. Fun Saturday night...

Thursday, March 5, 2009

keeping it interesting and going out with a bang!

As usual and like many of the kids who wind up inpatient at KKI, Kenzie likes to make a normal day memorable. Kenzie had her snack at 6:30 (sweet potatoes, oatmeal, and banana applesauce - nothing new about them) and then her great friend Miss Patti took her for a ride in the wagon. Patti said she noticed something red on Kenzie's face during the ride and tried to wipe it off but thought it must have been because she vomited during the snack. We put Kenzie to bed around 8 and settled in for our last night here.

At around 915, I noticed Kenzie in a sort of half awake, half asleep state. She was moaning and writhing around uncomfortably. Kenzie is normally a very good and sound sleeper. After a few minutes, I started to pat her back and talk to her. When that didn't work I told Jordan it seemed like something hurt her because of her movements. He noticed that she kept grabbing at her diaper. I did what I always do and climbed into her crib with her so we could "spoon" and she would fall back asleep. Kenzie kept taking my hand and literally throwing it off of her. She did not want Bunnie, her blanket she cant sleep without and wanted nothing to do with me. Now we really knew something was wrong. Because it seemed like she kept grabbing at her crotch, we thought maybe her diaper rash got worse and I told Jordan we should change her diaper. It was pretty dark in the room with just a low dimmer on but when I took off her diaper everything seemed really red. We turned on a light and immediately saw that (and she will kill me for using these terms one day) her labia were filled with hives and all swollen. Jordan turned on a light and we stripped her naked. As it turns out her whole body had hives and a rash. The scariest part was that Kenzie's face, mouth, ears, and neck seemed to get worse every minute. We called for the nurse and told her to page the doctor on call but luckily we keep baby benedryl around and gave her a dose.

With all of Kenzie's allergic type reactions she's had, they have all been digestive and have never been anaphylaxic (sp???). This was actually one of the reasons the team decided to put Kenzie inpatient. They were always afraid something like this might happen. The benedryl worked and luckily we didn't have to give her any shot because her airways stayed open. Within 20 minutes Kenzie was smiling and ready to play! She really is amazing. The doctor decided to switch her overnight feeds to straight pedyialte from formula because he was afraid maybe her batch had been contaminated and the pharmacy wasn't open to make her more. So now we sit and scratch our heads as to what Kenzie ingested that caused such a systemic reaction in her. We know because of her face, mouth, and labia that it was something she ate but we have no idea what. We will make sure this morning that the team downstairs didn't put anything in her foods different but are pretty sure that they would never. If you were to see the kitchen they cook Kenzie's food in, it's pretty amazing and totally sterile. Because they have so many kids with allergies, every kid gets their own station, cooking utensils, blender, etc. Kenzie's station and bin in the fridge are marked everywhere with "high allergy alert" postits. It has always been one of the things I am very impressed by here. They really take kids sensitivities with the utmost caution.

The only thing we can possibly think of is that the sweet potato was a fresh batch of food they just made yesterday. Maybe somehow it had touched something (they puree fresh vegetables for Kenzie)?!? But what... so now we have one more worry with Kenzie and might need to get one of those pen things to carry around because we don't know what caused this. We always said, and I think I was recently talking to my dad about it, that at least with kenzie, if she couldn't tolerate something... shed just poop it out. We didn't have the worry of a full fledged allergic reaction. Now we do.

I finally convinced Jordan to stop checking on her and go back to the hotel at about 11:30. He was sitting there with a flashlight examining her to see if the redness was going down every few minutes. The doctor here told us to give her benedryl every 4 hours all night and watch her. So needless to say, I have been up all night. The good news though is that I should sleep in the car and in less than 12 hours we will be home!!!!! I will make an appt with our immunologist/allergist as soon as I can get in to talk about what happened and see if he can figure out what it might have been but we may never know unless it happens again.

On a really positive note, our nephew Zachary found out he is going to get a baby sister yesterday!!! Tracee and Adam are so so happy! I can't wait to pass down some of Kenzie's dresses and buy her some bows! Congrats :-)

We are leaving here around noon and I sooooo soooo can't wait to get in my bed tonight. I will post pictures of our last few days tomorrow. Right now I'm going to get dressed and pack up! Have a great day :-)

Tuesday, March 3, 2009

SOOOOO OUT of here




So we are in our final hours at KKI. Unfortunately, our last week at KKI has not gone as we had hoped. Instead of making final tweaks and improvements to our therapies, we are really trying to just hold Kenzie's head above water. Kenzie's stomach bug has really put a damper on everything. She is cranky and cries through her meals and therapy sessions. She vomits a lot more than the norm and she is falling asleep in her meals because she is so worn out from the work it takes to poop, vomit, and gag. We have not been able to increase her volume at all, or get her back to the variety of foods she was on either.

Pretty much we might be better off an home right now. We are afraid because of the rancid smell of it that Kenzie may have CDIF but they won't test her here because they will need to put her on isolation. They also won't put her on the Flagyl preventatively that would take it right away if she does. We have an appt with Kenzie's pediatrician Friday so we can get everything taken care of then, but it would be much better if we could know now. That way she would feel better quicker if it is in fact CDIF. We are now seeing for the first time how a GI bug affects Kenzie as compared to healthy people and it's not so pretty. I feel bad for the poor thing.

So the last few days kenzie has thrown some nightmarish meals at us. Every time the therapists come out of the observation room they say we are dealing with it well... but it's very hard because we know she's just not feeling well and doesn't want to eat. I really cant blame her... when I have a stomach ache I don't want to eat either. Jordan and I realized tonight at dinner that her vomiting during meals is for sure behavioral. She is gagging and vomiting as soon as she sees me go to give her the first bite. As for Kenzie's protocol, we have made 1 final switch. Kenzie's drink and meal session will no longer be separate. Kenzie now gets 3 bites of stage 1 puree food, then 1 drink of formula (which is 1/8oz). She no longer gets "15 seconds of incentive" and now just has toys to play with throughout her meal. I think overall that will be so much better as it makes meals even a tiny bit faster and will seem more "normal" to the naked eye.

Hopefully I will post again tomorrow before we leave here about how Kenzie is feeling but if I don't I should say that although the last few days have been pretty depressing, our overall feeling about KKI is that we are so happy we came. If someone should ever ask us what we think about it here, we would recommend it in a heartbeat. Without KKI, we never would have gotten Kenzie to accept anything by mouth. We really don't feel that we could have done this at home. I would say to anyone that they should go in knowing that they will need to fight for the things they think are best for their child, but in the end if the parent and team here can compromise... it should all work out.

If I had to change anything about this place it would be the way KKI places value on parent suggestion and input. For many weeks we tried to get the people here to listen to us about Kenzie's unique tastes. She is very unconventional when it comes to music and toy choices. She craves structure where many kids do not. I do feel had they listened to us sooner, Kenzie's progress might be even greater. I also really feel like they should have some sort of support group for parents after leaving KKI. One of the best things about being here has been that all the parents get to be in it together. Finding good therapists when we get home and when we move to LA is going to be really hard. If there was a group somewhere online or off... parents who want to share information about good and bad therapists, horrible days, and their progress day to day can do that. I know confidentiality is an issue but it should just be something that is offered so that parents who want to can open themselves up.

We are so lucky we found KKI when we did. Most people don't make it here until their child is 3. By then, their behaviors are so ingrained in them that it is a part of who they are. We really believe that kenzie's post KKI transition is going to be even easier because of her age. We can't mention our therapists by name on here but really want to thank each of them for all the effort they have put into helping Kenzie. I think a few of them have fallen for Kenzie's adorable charm and she is for sure going to miss all of them and the friends she's made. Personally, I think Kenzie is going to be mighty bored when she gets back home and only has me to play with!!!!

Sunday, March 1, 2009

A Blip...






Well we thought we had a course of action for our last week here but Kenzie decided she had her own plan as usual. Yesterday morning we woke up to a fever, vomit and lots of what Kenzie's friend Lilly calls the "uh oh's" (aka diarrhea). The fever is now gone but the rest of it has stuck. The good thing is that because she had the fever, we know that this is not food related but some kind of bug. We are trying to get Kenzies stool tested for CDIF (she had it in June) because it smells pretty rancid. So instead of our usual 1oz of formula and 3oz of food, we have had to decrease to 1oz of food and 1oz of formula. Kenzie's vomiting during her meals was just out of control. Hopefully she will be better in a day or 2 and we can finish making the last bit of progress before we leave Thursday. We are so lucky though that only the fever and vomiting phased Kenzie. The "Uh-Ohs" are so normal to her that she doesn't even notice.

Jordan has been feeding Kenzie for the last 2 days and I have never seen him so nervous! It was actually pretty funny to see someone who performs surgery on a daily basis go into the room to feed his daughter. When he poured his first set of drinks for Kenzie, his hand was shaking like crazy. I was sitting in the observation room laughing at him. A meal or two later though and he is now a pro. Given that Kenzie hasn't felt her best she has been throwing him for a loop in there.

Grandma Daryl (Or MamEye as Skylar calls her) and Grandpa H (PopEye) came yesterday and got to see Kenzie for a day. We couldnt take her out because she hasn't felt well enough but we did get quality time here at KKI for our last weekend. Jordan and I literally are counting hours till we get out of here. We soooo can't wait to be home.

Thursday, February 26, 2009

7 Down, 1 To Go...






All 5 pictures from Lilly's Birthday on Feb 18.
Picture 1: Kenzie as a "mountain climber" (Kenzie and Chance's mom Miss Billi )
Picture 2: Lilly and her cake
Picture 4: Lilly, Kenzie, and Kenzie's new friend Amaya
Picture 5: Kenzie's favorite walker

We are finally in the homestretch and we really just can't wait to go home *or at least Jordan and I can't. Kenzie loves it here. I really think she's going to miss having older kids around all the time. In the last 7 weeks I swear Kenzie has turned from baby to toddler before our eyes. I don't know what happened to my little baby that used to just sit on my lap patiently. Now shes trying to climb on things, run with her walker, crawl away from me, and play games all the time. Her receptive communication skills have grown so much. Although kenzie still doesn't speak words she now signs even more. She also understands everything we tell her and follows commands really well.

Tomorrow Jordan will get here and start his training. It should be fun to watch. As far as Kenzie's meals and drinks go, shes doing really well. Since we switched to an ounce of formula and 3oz of puree foods at every meal, we have noticed an increase in vomiting but we think her tiny stomach just needs to adjust. Also, I have really begun to see a trend in the vomiting as well. In the meals that I feed Kenzie with distractions (ie. people around) her vomiting must be down like 95%. I wonder if when Kenzie has distractions she stops thinking about how she doesn't want to eat, or how full she is???

Over the next week we will really just tweak and perfect everything for being home. Hopefully Jordan will become a pro feeder really quickly. When we get home our plan is to get a nutritionist and start to plan for therapies when we get to LA. We will meet right away with early intervention in NY. We will be busy for sure but as long as Kenzie's meals stay on track and we make that our priority, things should just get better. Jordan and I booked a vacation to Puerto Rico for the end of March. This is the first time since Kenzie was born that we have felt she is stable enough to go anywhere. We are so excited to take her away and just can't wait! I have a plan of what jars of food Ill need to bring, along with all of her formula and aside from meats, Kenzie should be able to eat the same as she is now for the 5 days.

I wanted to mention another little girl Isabella who we have never met but have been penpals with since we found out about KKI. She left the program back in July and was a true success story. She's had a rough couple of months and we have read her blog everyday. Jordan and I are so so happy to see that she's back on track and eating much better! I've talked to her mom a couple of times and her struggles remind us daily just how fragile these kids and their eating are. We really are hoping for only better and better days ahead for her now!

As usual thanks everyone for all the well wishes and cheering we get from you. I have never wanted to be home so badly as I do even though I've been so fortunate to meet great people here. 12 more hours till we see Jordan!!!!

Tuesday, February 24, 2009

LANDMARK DAY!





Pictures 1 & 2: Kenzie's favorite nurse
Picture 3 & 4: Courtney Wagon ride with Poppa

So I can't spend much time posting because I have a horrible migraine right now BUT I just wanted to pass along the amazing news.

First, last night I decided to break the rules (shocking right???) and take liberty with where I gave Kenzie her snack at night. They said for me to feed her "where you feel comfortable" which really meant anywhere in the hospital but I decided to take her out. I took Kenzie to the mall and fed her in the food court. If I had asked the staff would have said no, so I decided to just do it, video it, and tell them after so they could critque me. People looking at us probably thought we were nuts, but Kenzie and I did great! We followed protocol to a "T" and kenzie finished drinks and food in under 17 minutes! When I told them this morning they were shocked at what I did but excited that it went well. They also said if Jordan is as good a feeder as I, then on Sunday we can take her to a restaurant and try it there. That's the last "scenario" I really think is important for us in real life.

Today was a landmark day! I started feeding kenzie 1oz of formula at each meal. We do it very slowly out of medicine cups but we did it! She did vomit each meal but not during drinks. I think just like when we moved from 2oz to 3oz of puree, her stomach now needs to stretch again to allow 4oz. For some reason Kenzie decided not to nap today so dinner and snack were a fight BUT the most important thing is that because I am giving her 4oz of formula during the day.... (DRUMROLL) Kenzie no longer needs daytime tube feeds!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Kenzie has been cut to 8 hours on the tube at night. She has surpassed the goals KKI put forth for her at their steering meeting and now hit our personal goals. Jordan and I are so so so so happy you can't even imagine! The only thing we need to do during the day is flush her tube with some water. It's really amazing!

I wanted to make sure I said thanks really quickly to Little Leena for the great stuff!!! The bag is going to be so cute when Kenzie takes Ballet with you one day! Also, to my boyfriend Gabe and his parents Nick and Elle... that sushi toy really made me laugh today! I swear it is my mission to get Kenzie eating sushi one of these days!

Anyway, we have 1 week left here and we will use it to train Jordan and hopefully gain the confidence we need to go home and stay successful. Hope everyone else is having a good night too :-)

Monday, February 23, 2009

New Day, Same ____





This weekend we had a great time with Eiee and Poppa. We went to Jimmy's twice and the Green Turtle too. Kenzie had so much fun with them (as you can see in the pictures). As for meal sessions, well, they are really going amazing! Kenzie barely ever vomits with me anymore (im biting my tongue as I say that) and is usually pretty comfortable and happy. I have been feeding her, her "snack" in the evening in our room upstairs. There are distractions with people walking in and out, family members around, and one night Chance was even in the room. For the most part Kenzie and I don't miss a beat. I have learned that as long as I can tune everything else out, she sticks to her protocol and timing. 3oz is now taking less than 12 minutes 90% of the time and sometimes even less than 11mins.

Drinks were a different story. This weekend Kenzie had a new feeder for her drinks session and she was not happy. The protocol is that I had been giving Kenzie her meal and then the feeders leave the observation room to come into the feeding room. I sit next to Kenzie while they proceed to get her to drink an ounce. Lunch was beyond terrible on Saturday. She cried and vomited, and cried and vomited some more. Kenzie has a 15 min time cap on sessions so at the end of 15mins she had only taken 3/8 oz. It was a huge wakeup call to Jordan and I that she has not forgotten her bad behaviors at all and will bring them out whenever something new is presented or she is scared. I had suggested doing the drinks before i started her meal without me in the room because i know she does better that way but they didnt listen. By dinner the feeder came out and told us that drinks were being discontinued alltogether for fear that she was crying so much she was at risk for aspiration and the feeder didnt feel safe even trying. Needless to say I was REALY upset and made it known. First, I felt like that goes against everything they believe here in this program about ignoring bad behaviors and rewarding good. In Kenzies eyes she was being taught that she cried so much and vomited so much that she now didnt have to drink anymore (ie: she got out of doing what she didnt feel like doing). This can start a whole pattern. We've been down that road before. The other reason I was so upset was because at our steering meeting weeks ago we had discussed the importance to us about teaching kenzie how to use either a straw or a sippy cup so she would have some sort of independance with drinking. Its just not age appropriate for a 15 month old to walk around with a cup... or if i send her somewhere for someone to feed her drinks with a medicine cup. They had promised us they would work to teach her in her therapies even though I understood it would never make it into her meals but then they never did (and trust me i asked repeatedly). So... i was in a pretty crappy mood and let it be known to the staff here. Luckily, they listened to me! Last night they brought drinks back in but did it in the way I had asked. They did her drinks session first with me out of the room. It went really well. Kenzie took her ounce of water within 5 minutes. Then I came in to feed her dinner and that went really well too! This morning was the same but at lunch they had me feed Kenzie her drinks. Theres definitely a learning curve and I was not confident but all in all it well ok. Tonight should be more of the same and I am not sure if they will want me to do try drinks on my own yet tonight for snack.

I also spoke to Kenzie's OT today and again reiterated how important it was for Kenzie to learn how to use a sippy cup or something to that extent and she listened too! I was so happy when I came to pick kenzie up and found out that kenzie drank a little more than half an ounce of her formula from a modified sippy cup! Hopefully tomorrow we will switch from water in her sessions to formula.

While Kenzie napped today I got my first lesson on how to make Kenzie's food. Because of Kenzies unknown GI conditions her variety of foods is pretty limited and everything we make is pureed down in a different way. I will leave here with a cookbook. Right now Kenzie eats fresh squash, sweet potato, carrots, corn, apples, bananas, pears, peas, mangoes & green beans. She also has eaten from earths best jars: turkey & Veggies, chicken & sweet potatoes, and a whole bunch of fruit mixtures. She is still at a stage 1 but they will take a jar of stage 2 food and blend it to turn it into stage 1. In order to make the consistency correct for some foods they add rice cereal. Today we made carrots, pears, and peas for Kenzie. I tasted all 3 and the peas seem to be grittier but they were definitaly smooth. We are giving them to her for dinner tonight. If she doesnt do well with them I might not make them at home. They take a lot of work to make because they need to be steamed, then strained by hand and then pureed. But it was really fun learning how to make the stuff. Tomorrow or the day after when she needs more I will help learn again. Also, Ive asked them to teach me how they puree some regular foods like toaster strudels for if Kenzie can ever digest that. They literally can almost puree anything here. It's pretty amazing.

As I was typing this Kenzie got such a cute package from her good friend Leena! Awhhh its so cute and I can't wait for Kenzie to start ballet so she can use that bag for it! Thank you!!!