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!!


Monday, August 23, 2010

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!

Friday, August 13, 2010

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 :)


Thursday, July 29, 2010

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)

Friday, July 23, 2010

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!

Tuesday, July 6, 2010

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


Thursday, June 24, 2010

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!!

Monday, June 14, 2010

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.


Tuesday, May 25, 2010

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.


Sunday, May 23, 2010


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.

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.


Tuesday, March 30, 2010

back to counting points, UGH!

We were on vacation last week and I decided to give myself and Kaden a break. I decided not to bring his food journal or calculate MET values. I made a general menu for everyday we would be gone and brought everything needed to prepare the meals I planned. It took may hours of planning, three trips to two stores, but once it was planned and packed, we had a nice relaxing vacation. I planned meals that would allow extra snacks or cheating and keep his daily value around 60 MET since he is allowed up to 90MET. I loved being able to just feed him and not have to weight and count, I premeasured everything for "grab and go" meals. I will admit we didn't stay on the meal plan at every meal, and did allow some minor cheating with french fries but nothing that would make his levels go crazy. We all had a great vacation :)

Now its back to calculations! I found imitation cream cheese yesterday thanks to a friend so I have a new food item to play with for meal ideas. (thanks Leona)

Friday, March 19, 2010

I have amazing Friends!! Thanks...

I'm a member in a local Mom's Club. I signed up thinking I would maybe make some friends and have some activities to go to from time to time and that's about it. Five years later, I can say that this club has given me so much more then I could imagine. I have made AMAZING and SUPPORTIVE friends that are there to help me or my family in a second. I have been able to meet other moms who are dealing with dietary restrictions as well. We sit and talk about the struggles and great food finds we have found and share tips on non traditional cooking. Even the moms who don't have to cook specialty foods give suggestions and find foods for Kaden. I feel so blessed to have friends like this. They have helped me become the super mom I am today!
Thank you Queen Creek Moms Club!!

Tuesday, March 16, 2010

Inner strength...

I will be the first one to admit I'm a cry baby and not that strong of a person, or so I thought. I was a spoiled child growing up, and now married to the most amazing man that is continuing the spoiling. After I had Mason, I was a mess and struggled with severe post partum depression. So, when I got pregnant with Kaden I was worried it would come back. How would I deal with the sleep less nights and demands of a newborn again?? Would I lie in bed a cry like I did with Mason?? Would my mom and Basil have to do everything for Kaden the first month like they did for Mason?? Thank goodness my "mommy genes" kicked it into high gear with Kaden and things went so smoothly. His delivery was great, he was a great nurser, and a champ sleeper. I was finally feeling like I had a grip on this whole motherhood thing and was feeling like a super mom with two kids. We were all clean, fed and happy, what more can you want.

After Kaden's diagnoses, my world came crashing down. I would look at my perfect baby and cry, there is nothing wrong with him, how could there be?? I would cry everytime I had to pump which was three time a day. Why can't I just nurse him, isn't breastmilk the best thing for a newborn?? What the he** is this medically altered formula I'm giving him and what the he** is it made from?? And of course my head was filled with questions of, why me? Did I do something wrong? Did I not take the right vitamins or eat something I shouldn't have?? I needed an excuse to blame myself.

Then one day, when Kaden was around 1year old, I woke up with amazing inner strength. I knew I could do this and handle this with Basil at my side. I don't want to cry anymore over this (yet I know I will from time to time, I'm a girl). I now have the strength to over come anything that gets in the way of Kaden having a normal life. I now know why Kaden was given to me, to help me find my inner strength and confidence. I'm now one of those crazy obsessive moms that will drive an hour to buy one ingredient and stay up all night cooking things for Kaden. I know I can find a way for him to eat like everyone else and will help him fit in as much as possible. I will because I'm his mom!!!

I truely know what it means to be a mom now. I can't feel sorry for myself or Kaden anymore. We are together for a reason and I'm so glad he is mine. HCU isn't him, just a part of him and I will do what ever I need to do to control it so he can be worry free and live life to the fullest.


Monday, March 8, 2010

Amazing Feb levels...

We got Kaden's blood levels back for the month of February and its 8, which is a normal level!! We have never had numbers this low so I'm ecstatic!!!! This is the first blood draw we have had since taking him off similac, regular baby formula, and I knew it was going to make a big difference. Kaden had great levels his first year until we put him on similac at about 9 months, and from there his numbers went haywire for a few months until we got it under control with cystadane. We'll now we are back and track. I'm smiling so big my face hurts.

Great start to the week!!!

Saturday, February 27, 2010

I found peanut butter for Kaden!

I'm so trilled to have finally found a peanut butter that K can eat. I have made him jelly and honey, honey and banana, jelly and butter sandwhiches but none can compete with good old pb and j!! This product is called Better then Peanut Butter and it available at target, my go to store. Bonus, its $5 a jar which is pretty reasonable to me since online the stuff can cost up to $10. Its made with peanut products so its lower in protein then regular peanut butter, but still tastes like peanut butter. I made him some beer bread on friday, yes beer, and smeared the new pb on it for breakfast, Kaden couldn't eat it fast enough! :)

Found this just in time for summer picnics with friends.

Friday, February 19, 2010

Cambrooke Foods....

I have been ordering low protein mixes from Cambrooke Foods for awhile now but just ordered some frozen foods for the first time. These foods are REALLY expensive and I hate ordering new foods not knowing if Kaden is going to eat it. To give you an idea, my order cost $100 and I got cheese slices (32), meatballs (16), pb and j pockets (6) and pizza rolls (6). Keep in mind the meatballs and pockets are small and Kaden eats two per sitting. BUT, I'm very happy with the food and think its worth every penny. The cheese slices make great grilled cheese that get melty and tastes just like a kraft slice. The pizza pockets are very "herby" and delicious and the PB & J balls really taste like peanut butter and jelly! The only item that isn't like the "real" item are the meatballs. They are chopped veggies rolled in a dough. They are VERY tasty and Kaden loves them but they are more like a veggie fritter if I had to describe it.

I'm finding great comfort in finding foods that resemble kids comfort foods that actually taste good. I've been hearing about these low protein foods from my dietician and other friends since Kaden was diagnosed but have had great hesitation in ordering them. Think about it, how appealing does imitation cheese and processed veggie meatballs sound?? To me, pretty yummy thanks to Cambrooke!! :)

Friday, January 22, 2010

higher daily protein allowance

Just got an email from the dietician about his formula change. We are taking away the similac (regular formula) all together and increasing his medical formula from 75gm to 80gms. By making this change Kaden can now have 90mg of MET!! (This is a big change from 70mg)

Now he can have more crackers and popcorn for snacks!! Popcorn is his favorite and with it being 22mg of MET for 1/4 cup popped, I've been having to deny him everytime we eat it. Can you imagine only being able to eat 1/4 cup of popcorn?? It's like 6 pieces!! Totally not fair....

Wednesday, January 20, 2010


We have now had Kaden's levels in a good range for 3 months, I am finally starting to breathe again. Feels like when everything starts getting good, we have bad numbers or need to start changing things. For December, Kaden's levels came back at 22 (under 50 is safe) so the doctor and I were very happy about that. We had a check up with Kaden's geneticist and he can't believe how good Kaden is doing. His development is perfectly on track and he is a happy, healthy baby. He was being very cute for the doctor and was loving all the attention of 3 doctors!! (every time we go to the doctor we have at least one other "doctor" join us. I feel like Kaden is put on display for new doctors to see someone with HCU. ANNOYING! I'm always a bit short with them even though I know I shouldn't be)

Kaden's protein allowance has been 60-70 mg of methionine, which is roughly 3gm of protein a day since he was 8 months. I was wanting the doctor to try a higher protein allowance, but at this time, he wants to keep things the same. But, I found a way to more protein!! Right now we are mixing Kaden's medical formula with 1 scoop of similac (regular baby formula) and have been doing this since he was 8 months. Well, now that he is over 1 year old, we can stop giving the regular formula with the medical formula. This one scoop of formula was equal to 1gm of protein, so Kaden will be allowed 1 more gram of protein from food. YEAH!!

Friday, January 8, 2010

New Recipes

I'm finally getting the hang of low protein cooking and was able to alter two recipes so Kaden could eat them. Not only did the recipes turn out, they were delicious!!

I have a really good banana bread recipe that I make for the family. The last time I make it, I felt horrible as we all devoured our delicious slice of banana bread and Kaden sat in his high chair eating dry cereal. So, the next day I began changing my banana bread recipe to low protein. I changed two ingredients, flour and eggs, and it was low protein! It was so delicious, no one else in the family knew it was low protein and Kaden was licking the crumbs off his highchair tray, literally!! :)

I also did this with eggplant parmesan. I was frying eggplant for my dad's birthday spaghetti dinner and wanted to make some for Kaden. So I changed out the eggs and bread crumbs for coffee creamer and wheat flour. The coating didn't brown because of the wheat starch but it did get crispy and was really good!! I covered the eggplant with spaghetti sauce anyway so the browning didn't matter, his plate of food was just like ours and that all I'm wanting. EVERYONE had a great family dinner for my Dad's birthday!!