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 costumediscounters.com, 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!

http://www.costumediscounters.com/

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!

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.