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!