Monday, September 27, 2010

vacation time!!

I'm so excited about a planned vacation this month, but I'm worried about what Kaden will eat and ALL the extra stuff I have to pack. The last time I took him on an airplane it was awful! Security gave me such a hassle about the powder formula and liquid prescriptions. I know they are just doing there job, but so am I as a mom. I argued with them about not wanting to x-ray the formula and medications but they told me I had to or I would have to sit in security for an hour while they did tests. UGH! So I just did it and prayed it wouldn't change the formulation. Then on the way home, I was told they had no right to force me to do this due to the disability act since I had his diagnosis paper from the doctor. I'm going to stay positive for this trip and maybe I'll get a nice person that can trust I'm not trying to blow up the plane, just bring what my son needs.

Traveling can also be hard since his formula and medications need to be kept cold. We are always having to spend more to get an upgraded room to accommodate this. But, its just something we have to do and can't get around it.

We are branching out and I'm finding lots of foods he can have at restaurants while out. Kaden had his first subway sandwich the other day and LOVE it! He had a 2inch sandwich with lettuce, tomatoes, cucumbers and ranch. He would of eaten more, but the bread is really high in protein so I had to cut him off and switch to apples. He also eat tacos! I didn't realize how low in protein hard corn shells are, never looked them up in my book. So, he had a Taco Bell taco the other night with just lettuce and tomatoes. Kaden loves chips, or anything crunchy so he was in heaven. Plus, he got to eat the entire thing! He is now on strike with french fries and I don't blame him. He was eating them about 3-4times a week since they are easy and the only thing he would eat most days.

I'm thinking with experience under my belt and some new fast foods, this trip should be easier then the last one over the summer.

Friday, September 17, 2010

I'm on milk patrol!!!

I'm been going to the gym now for a few weeks and love it! I put both my kids in the "kids klub" while I enjoy my workout in peace and quiet. There is a sign on the door that no food or drinks are allowed within, so I never worried about Kaden being able to get his hands on a food/drink he shouldn't eat. Well, today, I went to get my kids and see a sippy cup of milk at Kaden's feet. Crap! I asked the ladies why is this here, and they told me kids are allowed cups of milk and juice. What? The sign says water only! I told them that my son can't have milk and continued to ask questions to see if maybe he had a few sips from the cup on the floor. The two ladies at the desk looked at me like some weirdo. "Your kid can't have milk? What does he drink?" Really? So, I explain that he is "allergic" to milk as well as many other food items so I'd need to know if he ate or drank anything while in their care. The lady in charge assured me that the milk was drank immediately by the child that brought it in and that in no way Kaden had some. Yet, the cup was on the floor next to Kaden and had a few ounces in it. The child that drank it was off and playing.

I know these things are going to happen but I got a reminder that I will always have to make people aware of his diet. Its so annoying. I didn't want to tell these women about Kaden's disorder, he is only there for an hour a day so I just said "allergic." I know this isn't the mind set, but I didn't want to tell them because I know they really don't care and wouldn't understand what his diet restrictions included. Oh well. I will remind them everyday and hope they watch him carefully around mysterious cups on the floor!


Friday, September 3, 2010

A Great View

Looks so good, huh? I just realized how wonderful my fridge looks today after shopping for Kaden at the farmer's market. The best part is that all the fresh fruits and veggies will be gone in about 5 days (I also have 6 containers of strawberries and a bunch of bananas on my counter). Kaden's diet has all of us eating healthier and these pictures are the proof. I didn't realize how far our eating habits have come until today. When Basil and I first go married, we ate junk all the time. Easy frozen meals and canned veggies were the norm for dinner. I love cooking, but back then, I could barely make anything that was super delicious AND healthy. Now, we eat a freshly prepared veggie every night with dinner and snack on raw veggies and fruits through out the day. Heart attacks at a young age run in both our families so healthy eating is a must for both of us. One huge blessing of Kaden's disorder, better eating habits for ALL of us. We need be around for a long time to see all the amazing things Kaden and Mason are going to do with their lives :)

I made low protein graham crackers last week and they are DELICIOUS!! I catch Basil and Mason snacking on them because they are just that good. Have you ever made crackers? Do you know how crackers are made? Holy cow, they are hard!!! I had to make two batches because the first batch didn't roll out properly, and had to be thrown out. There was some crying, then cursing, and in the end, wonderful, crispy, cinnamon-y crackers. I even did the little holes down the crackers so they will look like regular crackers. Cute huh?!

Off the Roller Coaster

We got Kaden's levels back for August and they were good. Homocystine was 22 and methionine was 312. His numbers have been very consistent and good for the past few months. Basil (hubby) took Kaden to his metabolic clinic last week and he gained 2 lbs! This is good news since he was slowly falling off the growth charts for weight. All in all, we are stable and happy. Good numbers, good appetite, good with taking his meds and formula.

BUT, on a side note, behavior hasn't been so good. We have OFFICIALLY hit the terrible 2's and OMG! Kaden like to throw fits, talk back and hit people when he doesn't get his way. baby is growing perfectly! hahaha! :)

PS. For those of you on facebook I just started a page called, Helping Hands for HCU. I'm hoping to get a foundation started and this is just little step in that direction. Go "like" it please!!