Thursday, April 29, 2010

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.....

Monday, April 26, 2010

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. **

Thursday, April 22, 2010

Earth Day!

Today is Earth Day!!

Just wanted to post some pics of my green baby! We don't do much to be "green" but I do use cloth diapers (which is huge in my eyes), and turn off the water and lights as much as possible. Don't you just want to recycle after seeing this face?

Wednesday, April 21, 2010

Upon reflection yesterday....

Kaden is still acting like a terrible two year old (he is almost 18months)! We went on a grocery store tour yesterday and I was on my toes, running after him the entire time. By the end of the trip I was exhausted, annoyed, and ready to put Kaden down for a nap.

I finally got a few minutes to myself and started thinking about his behavior and how it's driving me crazy these days! Then a thought came to me. I'm happy he can run from me. I'm glad he can be mischievous and can find a way into anything. I'm glad he can talk back to express his feelings. With Kaden's disorder, I could be dealing with many more complications. He could be delayed, have vision or heart problems just to name a few. But, I'm blessed to say he body is responding very well to his diet and vitamins. I'm blessed to have a child that is developing normally and amazing his doctor along the way. He may not be "medically" perfectly healthy, but he is perfect in my eyes.

Some moms would do anything to have their child respond to them or their surrounding world. Some moms will never hear I love you, or get a hug from their child, and both my sons are able to. What more can I ask for? So, I decided I need to buck up, stop complaining and try to enjoy this stage since I'm luck enough to experience it with my son.


Thursday, April 15, 2010

Just one of those days!

I created this blog as a therapeutic outlet for when I have days like today. I think, if pushed, I could of easily put my kids in daycare today and gone to work! (or out to lunch and shopping) Kaden is only 18 months but is seriously acting like a terrible 2 yr old! He now talks back (says no no to me with a pointed finger) and bites when he is frustrated and can't get his way. He has stopped listening to me all together and lives to the beat of his own drum.

Thanks goodness, I had a play date with good friends to calm down and vent. Nothing better then venting to another mom about your troubles and hearing that they have the same struggles! I love being a stay at home mom but some days I question it. I think stay at home moms should at least get a "Good Job" certificate every once in awhile for some validation.

This afternoon I'm going to create a count down until BOTH the boys are in school!!


Thursday, April 8, 2010

What is MET??

I noticed that I use the term "MET value" a lot in my blog but don't really explain what that is. MET is short for methionine, which is an amino acid building block for protein. I know I talk about Kaden not processing protein but its really methionine he can't process. I count Kaden's daily methionine intake since its more accurate then just counting grams of protein. Each gram of protein is roughly 15-20 miligrams of MET and that is how I decide if Kaden can eat something by looking at the protein value on the label. Calculating MET is much more difficult since you can't find amino acid values on most food labels but I do have some resources from our WONDERFUL dietican that gives the MET value for a set portion of food.

This is why I calculate MET over protein....Food labels can trick you sometimes!!

*One yoplait "gogurt" has 2 gms of protein, so that would be 40 MET points based on my guidelines from the dietician but it has over 200MET! K's MET points can't be over 90 each day. This food is definitely not allowed but from looking at the label I would think he could have one every once in a while if he is low on his protein allowance.

*One gerber cereal bar has 1gm of protein so I would calculate 20 points for the bar. But in my resourse book its only 12 points! That give Kaden 8 extra points for the day which is an extra snack. (8 points equal a cup of fruit or 4 wheat thins for example) If I was calculating protein, I wouldn't have "extra" points left over.

Thanks for reading my food science post! Hope your not sleeping by now, but this is my life.