Monday, August 1, 2011

Getting Ready For Halloween With Costume Discounters!

Kaden is still having bad numbers. We have added another medication and are up to 5 total, 3 times a day. So we are having some fun, a review!

School has started and Halloween is right around the corner. I was super excited when asked to review a costume from Costume Discounters. My boys right now are all about super heroes, transformers, basically anyone that can save the day. Look at the amazing selection of transformer costumes they have available this year. I knew as soon as I saw this toddler transformer optimus prime costume, Kaden would love it and I had to order it!

Costume Discounters has a huge selection of costumes and sizes, way more then you can find at any mass retail store. They carry costumes for infants, kids, adults, pets, and must have accessories to make your costumes complete. Here is the huge infant costume selection to give you an idea, plus my favorite for your little piglet!

We got our costume super fast, who doesn't love fast shipping?! As soon as I opened the package and my son saw optimus prime, he was ready to put it on and play. I love this costume! Its very well made and very comfortable for my son to wear while playing, eating, hanging around the house, you name it. My son is almost 3 years old and I ordered a 3T/4T. It fit perfectly with a few extra inches in the leg length. The "muscles" are very light weight and soft, very comfortable to wear. My FAVORITE feature is the mask, its not plastic!!! I have bought may costumes with the plastic masks, and they last about a week in my house. This mask is a soft hat and can be wore over the eyes or up on the forehead. It even fit my 6yr old!

We've had our costume for 1 week and my son has worn it everyday for imaginary play. He is ready to save the day and loves having a comfortable costume to wear. I was very impressed with, they are now my favorite costume store! I will be purchasing more costumes from them this month for Halloween, and a few extra to put away for gifts. Costumes are more then just for Halloween, buy a few from costume discounters for pretend play, Christmas/holiday or birthday presents. There prices are guaranteed to be the lowest, and the quality can't be beat!

Saturday, February 26, 2011

Back on the Roller Coaster

I feel like my posts go from great to bad, with no in between.. That's HCU for you! Kaden started his new formula in January, now that he is over 2, and we transitioned very slowly. He takes 90 gms of formula a day and we went in 5 gm increments every 3 days. He didn't notice the difference until the formula was about 75% new and 25% old. Now that he is on 100% of the new formula, he won't drink it! I'm lucky to get 5-8oz down him a day and he is suppose to take 16oz. Its been 3 weeks now and I can see the changes. His behavior has been horrible! He is back to hitting, biting,and screaming all the time. He stopped napping and just doesn't sleep well and, having 4-5 dirty diapers a day so we are now battling a diaper rash. Kaden's doctor says that increased levels doesn't have outward signs, but I see signs in Kaden. Every person with HCU responses differently to diet and treatment and I see changes in Kaden when he is off his diet or his levels are high.

I called his dietitian last week to see if we can try another formula. I have another brand I got as samples, but I need to know how much powder per ounce of water for his weight to make it. There is also an HCU gel product that can replace formula. Its like a jello mix they take 2-3 times a day and its only a few ounces, but it doesn't give the same calories and nutrition as the formula so we will have to see what the doctor says. Just waiting for a call back now.....

We did blood draw a few days ago and I'm expecting bad numbers, but we will have to see. He was a bit high last month and he was on his diet and doing really well. I think it may be time for some diet/medication changes since he is growing. Fingers crossed....some wine to relax...we will get through it and I will get Kaden back on track.

On a good note Kaden was so sweet during his blood draw. I hate going, I feel bad every time we go and wish I could do it for him. No baby should have to get poked every month, especially my baby! Anyway...They called his name and he followed the nurse back saying, "hi nurse." He climbed into the chair, and tried to wrap the rubber band tie around his arm. I got him on my lab and and he gave his arm to the nurse when she asked for it. He cried very little during the draw and stopped as soon as she was done. On his way out he told the nurse,"thanks, no protein." I could of just melted. He knew what he had to do, he knew they were testing his protein and he was so brave. I LOVE him!

Thursday, January 27, 2011

a bit overloaded these days!

Wow! Its been way to long, sorry. My life has been non stop! I'm going to recap....
October-We did a Disneyland trip and celebrated Kaden's second birthday! I also started an organization called Helping Hands for HCU on facebook. I'm hoping to become a non profit soon but for now we are a support group, and I'm planning to do fundraisers once or twice a year.
We also had our first fundraiser for HH4HCU! It was wonderful! I made custom awareness ribbons and goodie bags for people who donated. We were able to raise over $800 in a month! whoo hoo!
November-Thanksgiving of course plus SHOPPING and preparing for Christmas. We also started looking for a new home.
December-Christmas, and PACKING! We bought a house and had 3 weeks to pack, move, and rent our current house so we didn't end up have 2 mortgages. Everything got done just in the nick of time ;)

So here we are in January and I'm finally coming up for a bit of air!

Kaden and the family are good! We are settling into our new home and life is going good. Kaden has had good numbers and is happily staying on his diet and drinking his formula.

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!!