Menkes Awareness Month

As a part of November being Menkes Awareness month, I am going to post little UNknown facts about Menkes in hopes that somewhere someday a life will be spared because of the knowledge and experiences my family is going through.Menkes disease is a fatal illness in which the intestines are unable to absorb copper, depriving the brain and other tissues of this essential mineral. The prognosis for Menkes is poor; death usually occurs in the first few years of life. There is no cure for Menkes, however copper injections can be initiated with mixed results. The earlier the treatment is given (i.e within the first few weeks after birth), the better the outcome. Sadly, most children are not diagnosed until several months later when the symptoms progress and become more obvious.

Happy Halloween!

Yes, I know this was almost a week ago, but better late than never! Is what they tell me.

Witch's Brew and Goblin Stew were just a couple of the spookalicious items on our Halloween menu.

Add a pinch of brains, a side of mummy fingers...

Then combine with a bowl full of zombie hearts ...

Finally, throw in a room full of crazy hulligans- and you've got yourselves a Halloween celebration!

No Halloween- in my book- is complete without Bingo and a Pinata!

Sad

Tonight I'm sad. I'm sure I'll be better tomorrow, so just pretend you didn't read this post. Cannon has once again picked up a germ and is suffering from another upper respiratory infection. Kent left this afternoon to go to California for a continuing education course so with my parents being gone, Reagran has come over every second of her time off work to help me with everything. She has been my angel.

Without our wonderful Dr. Derek, may have been to the hospital by now. He has made it possible for us to do nebulizer treatments, steroids, antibiotics along with a suction machine and pure oxygen at home.

It's hard to know exactly how to keep him the most comfortable, while his head is dripping with sweat, his arms and legs are cold and need wrapped up.

My fears and emotions are so intensified when Bubba is sick. I hate to hear him struggle to breathe, I hate to see dark circles under his eyes in contrast to his pale skin. I hate to hear him cough and choke as he tries to swallow down the mucus in his throat. I hate the panic in his eye when he can't get enough air. My soul aches tonight as I think of what the next few years are going to bring, what the rest of my life will be like because of Menkes. Menkes is a horrible disease. I hate that it exists. My heart hurts for those precious little boys that are in the hospital tonight and I am thankful for the blessing I have of being home in my own bed, with little bubba boy. I am thankful for good friends that stopped by with Teriyaki take-out for lunch and brought dinner over and spent time sitting with me, while lifting my spirits. I will go (hopefully) get some sleep now and I will feel better in the morning, but just tonight I am sad.

A couple nights ago I was watching the women of SNL and saw an old "Debbie Downer" clip. In fear of being known as Debbie Downer, I thought I'd end on a happier note.

Today was picture day at Ella's school and I just love this picture I snapped with my cell phone for Kent to see her. She stretched out across the furniture to give her best pose. Love that girl!

Also, I just love how much Ethan and Ella adore Cannon. I had to snap a picture of Ethan taking good care of Bubba in the Tubba (...just go with it, ok?).

Also, yes, I am using my cell phone for pictures now even when I'm at home. :(

Frownie face? I guess I am a Debbie Downer.

Hallow's Eve

Around here Halloween is all about dressing up, carving pumpkins, and trunk-or-treating! Earlier in the week, Grandma and Grandpa took Ethan and Ella to the pumpkin patch to pick out their very own pumpkins. Ella picked out a white one. My parents told her that she could paint it if she wanted to (instead of carving). She responded by saying, "but I wanted it to be white!" They also did Halloween Gingerbread Houses. My mom and Ella did one while my dad and Ethan worked on the other.

When we got home from Seattle, the kids traced out where they wanted to carve, then Kent did the carving how he thought it should go. It was NOT where the tracings were. Ethan decided he could do the rest on his own. He did a very good job! I am sorry to say the lines were done with permanent marker so you can still see them. Beluga.

Don't you worry! It still won an award at the church party. Haha.

Yes- we did. We are the cheesiest family out there. Oh well. This is the only thing I could get Kent to agree to- simple and easy. The rest of us just hopped the wagon and my parents really didn't have a say in the matter. Ella didn't want to be a cheerleader. She wanted to be a princess. We compromised and made one of her dresses into a BYU princess dress. Done and Done!

When Kent put this costume on Cannon he said, "I better make sure his laces are out!"

At the church Trunk-or-Treat party, they had lots of fun booths for the kids. This one was very creative- Spider Racing!

Ella was so cute to watch at this one. She started chasing the donut around in circles, until at one point, the donut was chasing her around in circles! We know she at least touched it because she has a darling little sprinkle on her upper lip.

After games and dinner, we went outside to trunk-or-treat. Once Ethan and Ella went around getting their bags full, they came back and helped us hand candy out. Kent and I loved watching them. Cannon was tired so my parents took him home. It makes us

] sad that he isn't bouncing around and trying to grab candy and crawling everywhere and making messes, but I am glad my parents are here to help us out so we can let Ethan and Ella enjoy these things and let Cannon go get the rest he needs.

Beluga

The most exciting this about our trip to Seattle this time was that we missed the pass closing by 2 minutes. They are doing rock blasting so they close the pass for an hour at a time and we missed it only by a few cars. Cannon wasn't complaining when he was able to get out and sit in the front seat with daddy for awhile.

He did, however, start complaining at dinner. Kent and I decided to try and make it a nice little night out at the Cheesecake Factory but Cannon screamed the whole time and we finally had to box up our food to take back to the hotel. Last time we were in Seattle (just a couple days earlier) we planned on going to the Cheesecake Factory but Cannon cried so much we never even made it, so I guess we are making progress. I know I'm going to wish I had my good camera for these trips, but there is already so much to pack and carry that the cell phone pictures will have to do. This is the one moment at dinner that Cannon wasn't screaming.

At our first appointment, the Neurologist reviewed the EEG with us, telling us that although his brain is having seizures equal to that of a severe epileptic patient, he is not having clinical seizures. Clinical seizures basically means his body is not showing us what is going on in his brain. We discussed the options of anti-seizure medication, but with one of the major side effects being irritability, we decided to hold off since Cannon is already very irritable.

While we were in Seattle, we decided to also meet with the Urologist to check Cannon's bladder and kidneys since a lot of Menkes boys have UTI problems. When we went in for Cannon to get an ultrasound, I said to the technician, "We can't wait to see if he's having a boy or girl!" She didn't think it was that funny. I am pretty sure Kent was embarrassed to be married to me. When we were leaving she said, "Have a good day." and Kent responded with, "Good!" Now Kent and I both looked very socially awkward and very much made for each other. My phone died so we have some pictures on his phone that I will upload soon.

While we are spending so much time in the hospital, constantly thinking about what our future holds, I think it makes Kent and I mad. Not mad in the "Why us? Why Cannon? Why? Why?" mad sort of way, but more in the "Alice? Have I Gone Mad? Mad-Hatter." sort-of-way.

In the elevator, they have it look like you are in a submarine with sea animals through the painted on windows. I made a funny face and Kent said I had the same expression as the animal behind me. We named the animal Beluga. Beluga has an expression as if to say, "I'm sorry about the bad news you just got. Wish I could help. I really can't help but I am sorry anyhow."

Now when things aren't so great, and even when they are, we just look at each and say,"Beluga," (in the same tone that Taco Bell says 'Chalupa' on their commercials- Cha-Luuuu-Pah, so here it would be Buh-luuuuuu-gah). Then we also shrug our shoulders at the same time if to say, "What else can we do?" I'm glad I have Kent to go through all of this with. He is level-headed but dorky and he's just what I need! I realize as in posting this, you will see how tired I am - and ridiculous- but ... "Buh-luuu-gah."

Chomp

Even though it was through a mascot costume, I was happy to see Kent with smile again. Community Dental Clinic has been working hard on a mascot for the office. They have decided to create Chomp the Gator because Kent and Brent (Dr. Copeland and Dr. Martin) both attended the University of Florida- home of the Florida Gators- for dental school. Right before we were leaving for Seattle last Thursday, Chomp made a personal visit. I told Erin that I was going to the clinic to take pictures of Kent dressed as Chomp and she said, "How did they talk him into that?!" Believe me- there was NO such talking. He was excited to be self-nominated.

Dental work and a good floss is the only way to keep Chomp's teeth this white and strong!

I was able to get my picture taken with Chomp too! That dental floss is positioned a bit suspiciously!!!

Can you tell how much fun he had? He was challenging people to dance-offs. He even broke out the sprinkler move!