Non-Medical Update

I'm just so proud of my boy Kaden. I wanted to post about some fun things he is doing right now for a change. He is currently 19months old and weights 24lbs. He is a very adventurous boy that loves to try anything and loves getting into mischief. I follow him around all day cleaning messes and keeping him out of things he shouldn't be into. He is also a sweet, kind, and flirty boy. He will walk up to a stranger, wave high, and ask for food, high fives, anything they have to offer. He is very smart! He can count to two, and knows a few body parts. Hair, eyes, nose, ears, hands, tummy, and mouth to list them out. He is very talkative and knows so many words I can't list or count them. He newest word is "na nu", love you. He is very polite and says thank you after you give him something and then says two and puts his other hand out.

He is a little boy that keeps me on my toes and drives me crazy some days, but can melt my heart with his smile and laugh. He is a cuddle bug at the end of the day and gives me kisses to "apologize" for all the rules he broke. I love being a mom to boys, there is nothing better!!

down and out

Been feeling a bit down and out lately. Nothing has changed recently, but I'm just feeling out of control. (FYI, I love to control all when it involves my family!!) I'm still struggling with the idea that my son has a disorder that he can't be cured of. I'm still crying over it when I'm alone and start thinking about it. I just feel so responsible, and I'm the only one dealing/treating my son.

I take on everything to control Kaden's HCU so no one else has to deal with it or even think about it, even my husband. I have all Kaden's foods in a special sections around the house with all the protein values written in charts, I order all medications, I take Kaden for all his blood draws and doctor appointments, I fill in all the daily food logs and calculate values. For me, If I need a protein value, I have to google and do a bit of research. For my husband and everyone else, I'm the walking methionine/protein value calculator and I HAVE to know off the top of my head if Kaden can eat any food that is put in front of him and how much. If I don't know, then Kaden could be missing out on a mealtime, and that makes me feel guilty. I feel like I HAVE to know how to make an alternative yet similar meal for Kaden at every mealtime. I want this for my son so he never feels left out but I'm beginning to think this is an unrealistic goal. I want to say I can cook for him everyday but I just can't. Plus, I have this whole worry of how is he going to fit in once he is eating "out of the house" on his own. When he sits down to eat with school friends, he will HAVE to eat differently. Am I setting him up for failure but protecting him and feeding him what always looks similar to what the family is eating? Should I make him eat different foods or deny him something while the rest of the family eats it? Isn't that mean?? Its that preparing him for the world? I don't know!!!......

I know these up and downs are just a part of motherhood but with Kaden I feel so much more responsible. I'm the one that is responsible for keeping his health perfect so he can go to do great things. If I slack, then in the long run, he could ultimately pay for it with his health. This is the burden I carry everyday and I know I need to let some of it go but I can't. If I let it go, who will pick it up? He is my little angel and I'm so scared of letting him down.

Bridgett

May numbers are in....

We got Kaden's levels back from 5-6-10 and his homocystine was 60. This is an OK number but a bit high for Kaden. When we got home from drawing his levels I noticed Kaden didn't get his full dose of betaine the day before! SH**! After this discovery, I knew his levels would be a bit high. Oh well, its done. His dietitian and doctor were happy with the levels so I'll try to be happy as well. Hoping for better levels next month :)

We did an extra test last month to check protein and it came back good. Now we know he is getting enough "good" protein from his diet to grow perfectly. Just what I needed to hear.

Bridgett

Finally!

Our low protein food order from Cambrooke took 3 weeks to get shipped. So, here we are a month later and finally have some food. With low protein food, it's hit or miss with the taste. It's either delicious and tastes just like the regular food or it is so nasty I wouldn't feed it to our dog. We got...

Wheat Starch-great flour replacer!! I love this stuff and well worth every penny

Tweeks-chicken flavored nuggets. These are very tasty! They are a breaded mushroom mixture. Takes a while to bake, but very convenient.

Cheese Pizza-Pretty good but don't think I would order this again due to the cost. They were $21 for 3 mini pizzas. They were really good but I could make pizza dough for a fraction of the cost and just order low protein cheese.

Hot Dogs-I'm going to be nice and say these are disgusting. (they are that bad!!) They are mashed yucca root in a casing. Enough said...

So, that is my review on our order. Not extremely satisfied with the wait or the cost of these few items, but its what I have to get use to. Cambrooke is an awesome company and does make some excellent low protein foods, you just have to find the items that work for you.

Bridgett

More changes...ugh!

Kaden had his 18 month well visit a few days ago and it went well. His pediatrician noticed he has dropped off three growth curves since birth and has only gained 3lbs since he was 9 months. He started in the 75th percentile and is now in the 20th for weight. I notified his dietitian of the observation and gave her Kaden's calorie intake for the previous week (that made for a fun night, google calorie count for a list of food). An average 18 month old need 900-1800 calories and Kaden was at about 600-900 calories a day including his formula. So, we are going to increase his formula amount to give him more calories and do a weight check in a month. We are also going to do an extra blood lab next week to see if he is getting enough protein. Kaden does look like a healthy proportionate little boy but if the body's protein/methionine is to low it can affect growth. Kaden LOVES basketball so we go to make sure the boy can grow as much as possible. :)

To top the day off, Kaden got three shots and was miserable for the next two days. Was up that night with him and had to clean some majorly nasty diapers. Ahhhh, nice!

Mother's denial??

I will admit I do dream of waking up and Kaden's HCU being cured. I do "pretend" that he is perfectly normal and has nothing wrong with him and then meal time comes around and slaps me awake.

It maybe my "denial" but I've been wondering if his Dr jumped to the conclusion that Kaden is not b6 responsive to quickly. Some people with HCU are b6 responsive. This means that they just need to take vitamin b6 to have good levels and can usually have a more liberal diet (no meat and cheese, but breads and pasta are OK). When the doctor saw his levels go down 3 months in a row, he asked us if we want to lower one of his meds (betaine) or up his protein. I of course wanted to increase his diet. More food = GOOD!! Betaine is just a powder I put in his formula. Easy to give, gets ride of the bad stuff (homocystine) in his body, and Kaden doesn't mind it. This suggestion got me thinking about the Dr possibly over treating him. Does he really need ALL the meds for good levels? Is Kaden's body getting better at processing methionine (protein)? This just got me thinking.....

April levels....YEAH!

We just go back Kaden's levels from April 1st (ummm, yeah, its the 26th!!!). His homocystine was 2 and his methionine was 10. These numbers are below normal so the doc wants to up his protein/methionine allowance. His dietitian told us to up his diet 20-25 mg of methionine (equals 1 gm of protein) and go draw blood again in a week so we can see how Kaden does with the increase. So, We are going from 90mg to 110-115 mg! YEAH! I was able to give Kaden a whole piece of bread today for his PB & J sandwich for lunch :) This is big for me. I thought I would never be able to give him normal bread when we started this journey but he is amazing me.

**Side note of annoyance! Kaden's dietitians are wonderful, amazing, and knows their stuff but today I had some frustrations. She was telling me to up his MET to 90mg from 70mg. What?? We were already at 90mg and have been for two month. The other dietitian that changed his diet two months ago forgot to make a note! Really! I know these things happen but its my baby. So, I called the dietitian back and left a message that I'm going to give Kaden 110-115mg, if thats a problem, call me. **