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?!

Bridgett

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. Ahhhh....my 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!!

Bridgett

Starting to find a balance

I'm always joking around and saying, "The stress of Kaden's diet is going to kill me!!" But, I will admit, I mean it most times. Being a mom to two busy boys is hard enough and some days, when adding the demand of Kaden's diet, I have to go into survival mode to finish the day. So, I'm started to do something for me. I just joined a gym a week ago and its made a world of difference!! First, I not a gym person and I hate working out so I thought this would be hard to start. But, it's so nice to just stop thinking, pedal an elliptical for a good 30 mins and just sweat my stress away. The gym I joined has daycare, pool, sauna, juice bar and best of all, good friends :). I love it and went 4 days last week. Whoo hoo! Its been a hard transition for Kaden and he screams when I leave him but he is just going to have to deal with 40 minutes in the Kids Club. Sorry, it's mommy time.

I'm also hoping to tone up and feel better about my body. I'm a naturally thin person but thanks to my beautiful boys, I'm a bit flabby in some areas. I'm also hoping to get super HOT so my husband will be on board for baby number 3. Hope he doesn't read this and ruin my plan! haha!

Picture: Kaden's favorite breakfast. A toasted dairy, wheat, gluten free apple cinnamon waffle. Best eaten when only wearing a diaper and watching Elmo. Always washed down with cold medical formula. YUMMM!

Bridgett

In a good place....

Things have been low stress and smooth at the Z household. Kaden has been taking all his medications and formula happily for the past 2 weeks. I was getting a bit worried there that an unpleasant intervention was going to have to take place soon. But, my little guy FINALLY gave in and is following his dietitians orders.

I just ordered some new foods for Kaden that I'm excited to cook with. We are going to try imitation mozzarella cheese (Kaden LOVES pizza) and chocolate. I'm thinking of doing smores for his birthday party in October in place of a cake, soooooo some good chocolate squares will be needed. His low protein birthday cake was so gross last year, I will never make him eat that again on his birthday.

On a non medical note, I'm so proud of my baby. We are already potty training!! (He's 22months) One night he used the potty "just like brother" and has been ever since. We are on day 4 now and he is using the potty 2-4 times a day. I'm not pushing it or even putting him in underwear, I'm just taking him to the potty every few hours. I hoping for him to be trained by his 2nd birthday! How cool would that be!! yeah! We use cloth diapers so we won't be saving money but I can stop washing 2 loads of diapers a week and can sell my cloth stash for some extra spending money. I'm thinking a trip to toys r us would be in order with the funds :)

Bridgett

Change in meds this month

With Kaden's numbers being a bit high last month, I asked his dietitian and metabolic doctor to go over his charts and see what can be done to try and lower his numbers. I faxed them my perfectly charted MET daily values for the past 3 months, wrote them a book on his diet and formula intake, and reminded them of his medicine doses and when he takes them. Kaden's dietitian is wonderful! She had a meeting with his doctor and got back to me within 24 hours. We are going to increase his betaine medication from 1gm to 2gm a day. This is a really easy change and I'm happy we aren't changing his diet or formula. This is just his powder medication I put in his juice everyday, super easy to add 2 scoop from 1. The only concern is this medication can cause tummy troubles if given in large amounts. So, fingers crossed Kaden can handle all his betaine in one dose. I don't know how I would add another medication dose right now. Currently, he takes 3 cups of formula, 1 cup of betaine in juice and 2 syringes of vitamins a day. Going to be hopeful that he can tolerate the change and try not to worry about it unless I see some tummy issues.

(sorry for such a bad picture, we have a stinky camera)

Bridgett

July numbers

July numbers are in and they are ok, homocystine was 59 and methionine was 107. I'm not happy with these numbers since we have been able to get Kaden's numbers in the 20's and keep them there for a few months. He has NOT been drinking his formula for the past two months so we are going to have to make some changes. I wrote Kaden's dietitian a book last night detailing his food, formula, and vitamin intake for each day. She also need some info on his weight and how varied his methionine intake is from day to day. (He is a typical toddler and has days of eating none stop and days of flat out not eating ANYTHING!)

I'm hoping to hear back from her and his doctor soon about what changes we are going to try to get some lower numbers. I do know they will probably increase his betaine medication. He had a check up in June with his specialist and he was so surprised to find Kaden still taking a pediatric dose of this medication. But, the dose was effect until now.

Kaden has been doing so well lately. He is so stinking smart and is really just a normal kid day to day. I FINALLY found a good travel scale on sale so we have been able to weigh his food while out. This has been wonderful! I no longer have to count everything he is eating or try to estimate how much of something he ate. I can just plop the food on the scale and in two seconds have an accurate weigh. YEAH!

Bridgett

June numbers=good numbers

We got Kaden's June levels back and they were great. His methionine was 40 (normal!!) and his homocystine was 33. I'm so happy that he has been having great numbers with the low amount of medication he is on. At the last doctor appointment, the Dr was so surprised to see that he was still on only 1 scoop of betaine. For his weight and age he should be on a much higher dose, but his body is processing his methionine (protein) so well he isn't needing it.

Kaden hasn't been drinking his formula like he should be. Everyday, he needs to drink 17 oz, but has only been drinking 13 oz. I was putting his betaine in his formula, but since he hasn't been drinking all of it, I'm now putting it in juice. Betaine is a medication that takes homocystine (an amino acid found in protein) and turns it into methionine (an amino acid). Homocystine can be toxic to the body if it gets to high, but methionine can be high and has no effect on the body. I'm hoping by giving the betaine separately from his formula, and making sure he gets the full dose everyday, his homocystine levels can come down even lower. Our new daily routine is 7 oz of formula in the morning, 4 oz of juice with betaine at lunch, 5 oz of formula after afternoon nap and 5 oz formula before bed. We have been doing this routine for the past week and are doing labs on Thursday. Fingers crossed for lower levels with the same dose of meds!! xxxx

Bridgett