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!

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