Kaden

I always feel a little funny telling people to meet me 'down by the tracks' for a photo shoot, but when you can find a beat up truck, some old water towers and a great stack of produce boxes, it is AOK! I have had my eye on this truck for awhile and was glad to have the chance to use it for Kaden's Sr. photos. It was just now as I'm posting this picture, that I noticed that this truck looks like Mater- minus the two buck teeth. Funny!

Kaden's family owns a company here in town that he works for and he has his very own parking spot. Pretty cool. I wonder if this name plate had to special ordered?

Back to Seattle

"First of all, I'd like to apologize...."

These are the words on the other end of the phone call Kent received this morning from the Biochemical Geneticist in Seattle.

Let's go back 48 hours...

Preparing for our appointment on Tuesday, I had my little note pad full of questions that have been swarming around in my mind for weeks now, regarding Menkes. As was mentioned in the diagnosis post, Kent was the one who suspected Menkes and requested our local physician to run the copper labs. Once the tests showed the copper levels were low, Kent faxed a copy to the Dr. in Seattle for confirmation along with questions about what action to take at this point. The Geneticist's reaction to the test results, didn't leave us extremely satisfied. So with note pad in hand and fears anxious to be quieted, we arrived at our appointment ready to do what it takes to help our little Bubba.

The doctor flat out said, "It is not Menkes, Menkes is a horrible disease." Kent respectfully asked what else would make Cannon's copper so low. The geneticist said that the level was not really that low. All the publications written by the renouned Menkes specialist have said anything below a certain level is enough proof of diagnosis, Cannon's level was nearly untraceable. Our geneticist kept telling us the reasons why he feels Cannon still has a mitochondrial disease, not Menkes. The fact that Cannon has not had seizures does not even make him a candidate for Menkes. The rest of the appointment felt .... unnecessary. I say unnecessary because our doctor was giving us more information about mitochondrial problems and requesting more tests to chase the mitochondrial disorder.

I was so thankful that I have been learning as much as I can from parents that actually have a child with Menkes so I knew that Cannon was fitting the clinical symptoms. many parents encouraged me to ask questions, to follow my gut, and listen to myself. WE requested that they test Cannon's hair for pilli torti, twisted hair, to support our suspicions. We have not seen Cannon have any noticeable seizures but we have been concerned with twitching ankles and wrists and something (I can't quite place it) that wakes him up in his sleep. Again, WE requested another test- the EEG.

Now that you have been caught up on our appointments in further detail....

Present Day

"First of all, I'd like to apologize...."

These are the words on the other end of the phone call Kent received this morning from the Biochemical Geneticist in Seattle. The pathology dept. said Cannon's hair did come back twisted and the EEG showed abnormal results with borderline seizure activity. Needless to say, we are packing our suitcases once again. We have an appointment with Neurology at 9 AM. My parents will be staying with Ethan and Ella while Kent and I take Cannon for another long day.

In the thick of all this, I am overwhlemed with the blessing we are receiving. I read a quote the other day that reads: "Don't Count Your Blessings. Share them." I am now going to go ahead and count them, and share them.

1.My parents are here, which takes an enormous amount of stress off because we don't have to scramble to find somewhere for our kids to go.

2. Neurology can takes months to get into but we somehow got an appointment for tomorrow morning

3. After connecting with other Menkes parents, we went into the appointment feeling confidant and prepared to push forward with tests.

4. Kent was guided to find the right medical journals to begin the testing for Menkes- if not we would still be looking and testing for the wrong diagnosis.

5. Kent has a job that makes it possible for him to take off the days needed to be to any and every appointment.

6. We live within hours of a top-ranking Children's Hospital

7. I know that I am blessed to be the mother of the most beautiful little Cannon boy

8. We are overwhelmed by the support and love of those surrounding us. We couldn't go through this without sweet emails, letters, phone calls and texts.

I could go on and on, but must get on the road...

Seattle and an EEG

Yesterday was another long day at Seattle Children's Hospital. My wonderful parents drove all the way back up to be with Ethan and Ella so Kent and I could take Cannon to his appointments. It is a blessing for me to have such selfless parents to take care of my little family in such a big way.
Our appointments included a follow up with the Biochemical Geneticist. At that appointment we were told that we are still waiting another couple of weeks to get the complete genetic testing, which we already knew. Cannon's weight has dropped to the 3rd percentile so we had to meet with a nutritionist. In order for Cannon to safely begin solid foods, they ordered a swallow study which we are just waiting to get the call back from Yakima since we can do it locally (only 40 minute drive - as opposed to 3 hours). We then met with Neurodevelopment. They agreed that he has not learned any new skills since our last visit, 2 months ago. We talked about some muscle spams, or twitching, that we have noticed Cannon doing lately. We aren't sure if they are just Cannon trying to get his muscles to move or if it could be something more significant. Together, with the doctors, we decided to try and schedule an EEG to see if there is any seizure activity (please NO!). The Neuro dept. told us they would call us when they could get us in for the EEG. As Kent and I were taking Cannon back down to Ophthalmology, the Neuro nurse came running downstairs to find us to let us know EEG just had a cancellation and they could see Cannon right now! I am aware of the blessings we are receiving, and I am thankful that we were able to get the EEG done while we were already in Seattle. We will know results within the week. While he was hooked up, he did the twitching that Kent and I were talking about, so if it doesn't come up on the test then we are in the clear. Keep your fingers crossed!! This is how many wires have to be attached to little Bubba's head.

He was annoyed that she kept sticking things to his head.

Now, he is a little more than annoyed. ;)

After wrapping his entire head in gauze, they let me hold him while the test was running. He calmed right down and fell asleep. Here he is, just waking up. Sweet little boy.

Solid Food

On the back of the baby food it reads: You know your baby is ready for solid food when they can do these things-

Hold their head up

Sit up with little support

Show interest in food

Reach for food

Well, Cannon has not showed any of those signs, and we know he probably won't, but creeping up on 8 months we decided he might need a little more than just milk to get his tummy full. We went ahead and tried giving him rice cereal. He seemed to like it- despite these pictures.

Halloween Dream

I stole these pictures from a friend's blog (thanks Alicia!). In my heart this is what I wish my house looked like this Halloween but I'm afraid to say that this post is the extent of my decorating. That's not entirely true- I do have a broom stick and a witch's hat on my fireplace but that's it about it. I am hoping to do a Halloween dinner with some friends sometime so I'll have to work up some muster to make the house look spooky.

Bill's Berry Farm

As I try to keep things "normal" around here- I sure make things difficult. If a picture says a thousand words, there are a million more that they are not saying. In these pictures you see what is happening in front of the camera; hay rides, apple picking, pumpkin patches, and sticker sheets! All smiles and fond memories...

Behind that camera you don't see my wearing a baby sling with a crying baby in it. You don't see me trying to get that crying baby out without dropping the camera, or the baby. You don't see me juggling the floppy baby as I try to get him out without hurting him. You don't see me give up on trying to look like I have it all together as I let the darn sling hang down between my legs for the rest of the trip because, frankly, I just ran out of hands to pick it up! I am struggling to know at what point me going to the field trips to support Ella ends up causing more stress and embarrassment for her. Oh well. I was there, and for her sake, I tried to keep smiling- "fake it, 'til you make it"!

Tonight's Best Friends

Kent is working late. Need I say more?

Family Pictures

I am pretty sure we can all agree that the event of taking family pictures is a dreaded one for good reason. It's so exciting to plan where you are going to take the pictures, what you are going to wear in those pictures, how your hair is going to done perfectly, what beautiful smiles each of your children will have as the camera shutter snaps. I am also pretty sure that we can all agree that nothing ever goes as we plan. The location that I picked was supposed to have an open dirt road leading right to the barn. The dirt road was NOT supposed to have a locked gate. The couch was supposed to be easily unloaded out of the truck right onto the concrete. It was NOT supposed to be hoisted over the locked gate and carried across the fields of goat's heads to the concrete. Cannon was supposed to get a good nap right until picture time so he'd be in his best mood. He was NOT supposed to scream hysterically, to the point that his face was red and splotchy. Ella was going to look her best in her tiered layered dress. She was NOT supposed to fall down the slide at the park and skin her chin. Well, Cannon screamed, Ella had a scraped chin and the fall air at sunset was colder than expected. By the end of the "session" Cannon was shivering from the cold. I remembered that with Menke's disease, patients have hypothermia problems and their bodies have a hard time regulating body temperature. How could we forget? Oh yeah- because we are still learning. Well, we hurried to the car and turned on the heat as we carried the couch back to the truck. When we got home, Cannon was still shivering so I swaddled him in two blankets and held him in the kitchen where the crock pot and the oven were on to try and warm him up. He finally stopped shivering and fell asleep. Now that picture taking has come and gone all we are hoping for is one good shot. Just one. Just one that is better than the only family shot we have- the photo booth picture. I think we did. Thanks, Erin for your patience. You were awesome! I owe you!

Let's Face(book) it!

Kent and I have been reading medical journals and publications, trying to find out all that we can about Menke's Disease. As you can imagine, these articles are to the point, factual and not very descriptive as to what the day-to-day life will be for a parent that has a child with Menke's disease. We want to know what to expect for Cannon as he lives with this condition. Last night, Kent and I were looking online when we happened to see a Menke's Facebook page. What?! There were some Menke's mommies on there and I requested a few friendships. I have already been accepted by a handful of them. I have learned stories of other boys just as amazing as my little Cannon anywhere from Canada to Knoxville to the UK. A single mom, a 17 year-old-mom, a mom with other children, a mom with her Menke's son as her only child. We are all different, but we have a common bond. I am happy to have stumbled across these people and I hope to continue to learn and gain courage from their examples . Some still are fighting their battles while others have lost theirs. I am already buoyed up, knowing that I am not alone. As I read what others are facing today, I am thankful that Cannon is home and healthy. My heart goes out to all the little boys with Menkes that are in the hospital tonight. Kent and I felt that there were no other people with a child like ours, but now we know there are lots of strong little boys that are fighting every day for those people that love them. I am glad that I have such an amazing support system including a loving husband, along with dear friends and family members. I am thankful for the guidance we are having as we take this journey with our little bubba.

Cannon's Physical Therapy

I'm torn about having Cannon do physical therapy. When he cries as if he's being tortured, I wonder if it is doing more harm than good? In the long run will it really make a difference? Then he has a session like this one and I know that any extra attention and stimulation he can have is a bonus to his quality of life. On the day I took these pictures, Cannon had a great morning, including one of his longest naps. The best time to interact with Cannon is when he first wakes up. When Miss Alison got there, he was still sleeping so we woke him up and he was very happy to play.

The two prior sessions were not very successful and the therapist had to leave early because Cannon starting crying so hard we could not console him. Last week the therapist showed up at our scheduled time which was only 30 minutes after Kent told me the lab results for the diagnosis. I couldn't find any tissues so I had been dabbing my face with toilet paper. As I answered the door, Alison knew that I was in no shape to continue with therapy. She graciously reassured me that we could just pick up the next week. As I came back into the room with Kent and Cannon, Kent looked at me with confusion and said, "What is on your face?!" I looked in the mirror and saw little tufts of toilet paper stuck to my face. Alison got more than she bargained for when she knocked on my door. Amidst all the sadness and heartbreak, Kent and I were able to get in a laugh- at my expense, course. I'm not going to lie, Cannon didn't last the full 45 minutes that he is scheduled for before he was just too tired. I am just glad that is endurance is lasting a little bit more each time and that he had at least a little bit of playtime.

10 Years of Learning

I'm getting smarter. Ten years ago I would've waited to see if Kent could figure out what I wanted as a gift from him. Five years ago I would've subtly hinted to Kent what I wanted as a gift from him. Even last year I would've heavily hinted to Kent what I wanted as a gift from him but I am getting smarter. Last night I found what I want him to give to me for our 10 year anniversary next month. I did not wait for him to stumble across this same item, I did not wait for him to wonder what to get me, I did not sit back and hope that by some miraculous intervention I would have this gift for my anniversary without having to tell him about it. No, my friends, I am getting smarter. I told him this is what I want for our anniversary. Kent is getting smarter too. He simply said, "OK , dear." Maybe not with the "dear" but you get the point. I asked him his credit card number and it is now in the mail. It is a beautiful chain with three (instead of just one, as shown) sterling silver pendants, each having one of my children's fingerprints on it. They send you a kit to make a fingerprint, for Cannon being so small we will use his big toe. I am so excited about this precious gift. It goes without being said why this is the perfect present for our 10 year anniversary.

Goodbye Grandma and Grandpa!

Tucking my little ones into bed felt a little.... different. After tubby time, I automatically thought that I needed to hand Cannon to grandma for his final snuggle of the day. I am not sad my parents are gone because they left us in a very good place; the house clean, the car cleaned, the laundry caught up, but I miss them. Ella picked out a shirt for school today and said, "This shirt smells like Grandma. I will wear it so I can remember her and not miss her." We are so blessed to have them so close (and yet still too far) and in a stage in their lives to be able to come up and pick us up off the floor when we are struggling. I didn't get my camera out nearly enough to catch my dad fixing the fence, hanging picture frames, changing the oil in my car, scooping up dog poop, sweeping the garage, and running the carpools all week. I didn't get the camera out to capture the many quiet moments my mom spent reading Halloween books to the kids, helping Ethan with homework, rocking Cannon in the rocker or stealing kisses throughout the day. I captured those moments in my mind and I am unspeakably grateful for their service in my life. Traditions are a big part of my family, including swedish twists and board games. I did remember to pull out my camera a couple of times. I love you Mom and Dad! We miss you already!

Primary Pumpkin Patch

Meet the Brother and Sister Cleghorn. They are one of the most genuine and generous couples you will ever know. This year they grew pumpkins in their yard and offered them to our primary kids for a fun primary activity.

We began with some Halloween story telling done mostly by the kids, but our sweet Bishop agreed to read one book as well.

After the stories were read, we let the families walk down the gravel path to the pumpkin patch for the picking!

Ethan picked a pumpkin he couldn't carry, so these two wonderful boys helped Ethan get his pumpkin to the car.

I don't know what was going on with Ella, but she was full of drama for this picture.

After the pumpkins were examined, judged, picked and put into their cars, we had a hot dog lunch complete with pumpkin cookies! While I was busy taking pictures, Kathy was busy serving lunch. We make a good team!

Near the end of the fun, the rain started to drizzle but it didn't scare too many people away. Instead they found their way to the beautiful covered wrap around porch and continued to laugh and build memories together.