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.

Bridgett

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!!!
Bridgett

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.
Bridgett

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!! :)
Bridgett

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....

levels....

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!!

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!!