Tuesday, January 5, 2010

One Year Ago We Left For Kennedy Krieger

Pics: I had to add some pictures of course. I think they are all pretty self explanatory

Ok OK so I have been beyond horrible. I have thought about updating the blog a thousand times but life always seems to get in the way. I know most people aren’t following anymore, but the whole point of this blog was, and remains to be, a place where hopefully other parents can get information about the program at Kennedy Krieger for their children. A year ago this week we left for Kennedy Krieger. I can’t believe it’s been a year! New Years Eve made me realize it when I was thinking how much easier the night was this year, than last.

So there is a lot to catch up on and this may take me a few days to write, but I will get it all in. First, we moved to Los Angeles as planned in July. Moving was stressful and hard, especially since at the time I was 9 weeks pregnant (I have 5.5 weeks left to go). Cali has been a big adjustment for us, but the weather is really amazing. Having said that, we are most likely moving back to the East Coast in August 2010 when Jordan’s fellowship is complete. While we love it out here, Jordan really misses “home.”

On to the most important person at hand, Kenzie… Kenzie turned two Nov 5th and we were reminiscing about how a year ago this week we left for Kennedy Krieger. We had no idea what to expect and we for sure did not know what the outcome would be, but we had to remain hopeful. When I last blogged Kenzie was eating her purees well, but trying to advance anything more textured turned out to be a nightmare. In August, kenzie gave us a horrible, horrible month. She began fighting us at every meal , forcing her vomiting again, and not doing what she needed to do. She even bit me once during a therapy session working on bites of a chicken nugget. There were many times I almost threw in the towel and wanted to give up. Putting her back on the tube seemed to me the least stressful solution. Mealtimes for 3 – 4 weeks were why I dreaded waking up in the morning. I don’t know how we did it… but we plugged along and went back to basics. We kept in touch with KKI and started from square one. By September luckily things started to turn around. Kenzie was back to her old self and meals were more enjoyable again. Still, we were no closer to her eating solids, but at least we didn’t have to fight her 3 times a day. Kenzie started a toddler program without me. 2 times a week for 2 hours she goes to “cool” (as she calls it). She LOVES “cool”! I always sent her with food for snacks and the teachers understood why Kenzie’s backpack was always as full when she left school as when she arrived. Exactly 2 months ago something clicked in Kenzies brain… we honestly have no idea what it was but she began making the sign for “eat” often. She also started to show signs of wanting to try solids. Kenzie has now started eating some solids daily. She eats such a wide variety of food, it amazes us. Basically her diet consists of whatever “mommy and daddy” are eating. We are slowly finding out what she can and can not digest, as many fatty foods go right through her. For the most part though, she is tolerating foods well. For a kid that was TPN dependant for 7 months and who could not digest breastmilk or any formulas… this is still pretty incredible. We know that even though she is tolerating the foods, she still does not digest them properly, as Kenzie continues to spill protein, IGG and other stuff out of her stool… but we don’t care. The fact remains that Kenzie now WANTS to eat… she enjoys eating several times a day and is starting to act more and more like a “normal” child. At the moment I am sending KKI videos of Kenzie eating solids so we can establish a protocol for her. Our hope is to make solids more of a set thing so we can get her off purees all together and eventually off the tube completely. Right now we supplement very little by tube at night. Most of what we have been giving her in the last few weeks isn’t even for calories; it’s because Kenzie doesn’t really enjoying drinking and we need to keep her hydrated.

Some huge huge news… Kenzie also stopped vomiting. Kenzie had a few different types of vomiting since birth. She had severe reflux and slow gastric emptying which resulted in a severe volume issue, and, of course, behavioral type vomiting. Since birth, Kenzie vomited at least 10 times a day (many times more). We switched from a G to a J tube while at KKI because we couldn’t even bolus Kenzie 5 ounces without her vomiting up 3 of them (yes we would catch and measure it). We have NO clue what happened 2.5 months ago, but all of a sudden Kenzie’s vomiting stopped. All types of vomiting… just gone! Unless you have a child like this, you really can’t imagine how freeing it is for us. We spent 2 years constantly worried about where she sat, whose carpet and chairs Kenzie could stain, what embarrassment we would face with new people… all due to her vomiting. Out of all the big things over the last few months, this could possibly be what has changed our lives the most.

Medically Kenzie remains as much a mystery as ever. Now that she has begun eating real foods we are starting to see what she can and can not digest. She still gets her weekly immunoglobulin infusions as well as some tube feeds overnight. Kenzies head size is still extremely large so she got a MRI to evaluate. The results showed some abnormalities and we saw a neurologist, but we are awaiting a second opinion on what the dr. had to say. Her height is on the other end of the charts. She still is VERY short. As of July the GI wanted us to boost up her calories by tube for 6 months to see if maybe her lack of linear growth was due to poor nourishment. We have been doing that and have seen a minimal difference. We also saw an endocrinologist about her height and he agreed with GI. The endocrinologist also wanted to watch her IGF1 level, a marker of growth activity. In april it was tested and was very low. Many times that’s a result of poor nutrition. He said a few months of boosting her calories should get that up if it was a result of poor nourishment. We had it tested 2 weeks ago and, although slightly better, it’s still way below the norm. IFG1 stands for insulin growth factor hormone. We have decided that at some point Kenzie will probably need Growth hormone injections… but since it’s a daily shot, we are going to hold off until she is older.

Developmentally Kenzie has made such strides. She is now walking, starting to run, trying hard to jump, and talking. Her speech is starting to explode and she loves to Skype with all of her family on the East Coast. Other than the fact that she is still not as strong as her peers, you would never know looking at her what Kenzie has been through.

Despite all of her medical issues I will say what I have said for a long time now, Kenzie remains the happiest of toddlers! She is such a joy to be around and quite a little ham. I don’t know when I will get to update this again but I will say… we can’t thank our first feeding therapist Joel in NY enough for getting us to Kennedy Krieger, and of course we totally can’t thank Kennedy Krieger themselves for getting us through the program and the rough patches we’ve had at home since. We are so lucky we got Kenzie there when we did because we really believe it made all the difference. She is so much closer than she’s ever been to leading a normal life and being tube free. We finally have hope, which to anyone who has been there or watched us struggle, is so so huge!

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

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


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

Kenzie Laughing

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

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!