One Year Ago

This is what I looked like exactly one year ago. It doesn't seem that long and yet it feels like another lifetime. One year ago I was merely a couple weeks away from meeting one of the most special people I will ever have the honor of knowing. One year ago I had no idea the journey that lay ahead of me. One year ago my biggest concern was how chubby my face was and if this little boy would look like Ethan or Ella. One year ago I anticipated the arrival of our third precious little baby, whom I always knew would have an impact on my life but I never could have known the person he would be, and the person he would help me to become. Cannon is still teaching me, molding me, refining me. As much as I hate to see my baby suffer, and I complain about sleepless nights, feeding tubes, constant congestion, missed milestones and so on, I am deeply thankful that nearly one year ago I was blessed more than I will ever know, with this perfect spirit to be my son.

The "Perfect" Baby

I had to catch my breath when I heard Ethan say, "Mom? Can we have another baby?"

There are a few reasons this question pricked at my heart but, for now, I am going to focus on the reason why Ethan would ask me. After his question, Ethan continued with, "I just want another baby because Cannon is not a perfect baby." You can imagine how I felt, hearing these words, and I know Ethan could read my emotions on my face. He quickly added, "I love Cannon so much, but he has that tube and he can't do things that other babies can."

I realized what he was saying and feeling. He was asking why his little brother can't be tossed in the air, why he can't sit up and bang on toys, why can't he walk around making messes, or why is he not able to roll a ball back and forth with him. I know the love that Ethan, and Ella, have for Cannon so I do not judge Ethan for saying these things. He genuinely just wants to have another baby (ALSO, not instead of) that can do what "perfect" babies can. My heart wanted to break, and I know it did a little, but I quickly realized what a moment I had here to teach my son about our temporal bodies and give him a new perspective on the blessing of eternal life.

I talked to Ethan about how amazingly strong Cannon was before we came to earth. His spirit was more perfect than Ethan's, or mine, or even Daddy's! I told him that Cannon was strong enough to experience these hard things with his physical body, things that we probably couldn't handle like Cannon could. I told him that Cannon is an example to us of being strong in spirit and that he is so close to Heavenly Father and we can learn from Cannon and try to be spiritually strong to go through hard things in this life. I told him that in heaven Cannon won't have physical problems that make his body not perfect. I told Ethan that Cannon's spirit is already perfect.

I was comforted when I saw the awe in Ethan's eyes as I told him these things. He was so impressed that his little baby brother had a stronger spirit than he did. He said, in a way that only an 8 year-old- boy who is playing basketball while getting a deep life lesson taught to him, could, "Wow! Cannon is really cool!"

I am so happy for this moment that I get to teach my children, while reminding myself how "cool" things are and Cannon is one amazingly perfect little man!

Two Peas in a Pod

I am so happy to be helping with ideas for a friend that is expecting not one, but TWO little grandbabies. One boy and one girl- perfection. Here are some ideas for the baby shower celebration.

Consider Yourself Hugged

If we have to be in the hospital, I'm glad it is close to home. It has made such a difference from how Kent and I felt when Cannon was put in the hospital in Maryland. In Maryland, we felt so isolated and locked up there. Here, we are able to be visited by our dear friends that love us so much. We have had dinner brought into our home every day. We are thankful that Laura was here to help us as Kent was recovering from the surgery he had last week. If she wasn't in town when all of this transpired, the stress level would have been through the roof. We are thankful for her sacrifice and hard work. She keeps everything going as I am at the hospital 22 out the 24 hours in each day. I am so thankful for the love and support we have felt from everyone through this. We have also had an outpouring of phone calls, texts and emails. I just hope I can show that appreciation I have to somehow let you all know how much I feel of your love. I couldn't do it without it.

I came home from the hospital this morning to shower and get Ella ready for school. While I was there, these beautiful flowers were delivered to my doorstep. They were not signed, but I want whoever it is that sent them to know how HAPPY it made me to know that I am being thought of. I thank you for that and definitely consider myself hugged!!
Through this journey we have met Cannon's kindred spirit friend, Max, who lives in Canada, also diagnosed with Menkes. Cannon and Max have had their share of hospital visits in the last couple months and they always make sure to send each other balloons and a Teddy "Bear" hug. I am so thankful for these gestures that mean so much. I hate Menkes and I wish it did not exist, but since it does and others have gone through this too, I am thankful for the connection I have with other Menkes families. I can call on them for feedback, information, strength, love and understanding at ANY time of the day. I know that they are a blessing in my life given to me directly from my loving Father in Heaven.

Updates

Yesterday we talked about getting a PICC line put in for Cannon so he could go home and have his antibiotics given through the line. No one certified in the valley is comfortable with Cannon's diagnosis to give him a PICC line so we if we want one, we'll have to go to Seattle. Since we are not 100% sure what this infection is, I would rather keep giving him the antibiotics he is already on here and avoid giving him another injection site which could possibly get infected. The decision not to go to Seattle, means Cannon will stay in the hospital here and continue on IV antibiotics through Saturday. If all goes well, and we are released on Saturday, we will then keep giving him antibiotics through his g-tube to finish the course. Cannon's infection has been responding well to the antibiotics. Where once, the raging redness was, is now just a yellowing discoloration that closely resembles bruising.

We tried feeding him yesterday at normal rate- 4 ounces every 2 1/2 hours. I was worried we were beginning to quickly, but the dietician encouraged me to get back to normal feedings as quickly as possible. The first couple of feedings were tolerated well, but last night he vomited again and we have slowed it WAY down and he has been able to keep it down. The complication might have also been with the morphine Cannon is receiving through IV causes nausea. We are trying to slowly ween him off the morphine and think he will soon be able to go without it. I am very thankful for that because his veins around the IV site always turn red, like this picture below, whenever morphine is given.

Last week, our family watched "Harry and the Henderson's" a few times. In this picture we joke that Kent looks like Big Foot with his cast.

I am proud to say that this month at Pack Meeting, Ethan earned his Bobcat award in scouts. Laura went and stayed at the hospital with Cannon while I went and was able to let Ethan give me the Mother's Pin. I am so proud of Ethan and I love watching him get excited about the scouting program.

Skin Infection

Over the last 24 hours or so, Cannon's G-tube site has been looking a bit suspicious of irritation or possible infection. Having conjunctivitis let us know that he does has some sort of bug going on in his body, at least in his eyes. Yesterday at 2:00 in the afternoon, Cannon threw up all of his formula while I was still feeding him. It was strange because Cannon has never thrown up before. I thought that it was because I hadn't propped him up enough while I was feeing him, making it easy to come back up. As we cleaned him up, we realized he felt a little warm. Once we took his temperature, we found out he had a mild fever of 99.5. Cannon's normal temp usually rests at 97 so we kept on eye on him. He was uncomfortable but able to sleep so we waited a little while to let his tummy settle before we fed him again.

Near 4:00 we tried feeding him again and he threw up everything again and was now running a slightly higher fever. As the evening went on we kept thinking it wasn't that bad and we could just keep him cool with cold compresses. At midnight, he woke up screaming and had a fever of 101.5. It was then that we realized the red spot was a lot more intense with fever blisters beginning to form on the skin, and a large bump underneath the redness. We quickly called Dr. Weaver and told him we are heading to the hospital. As we were driving to the hospital, Dr. Weaver called and let the ER we were coming in and gave them a brief history on Menkes. It hit me again, that not only did we have a very sick child, but we have a child that needs an introduction before we get there. I know the doctors and nurses were online looking up Menkes disease and learning all they could from a website in the next 5 minutes before we arrived.

Upon arrival, Cannon's red mark now had streaking coming from it. His temp had hit 102.3. I was thankful we didn't wait any longer. The staff was amazing at making us feel taken care of as they hooked Cannon up to monitors and IV's to get some fluids and anti-biotics going. We've now been in the hospital for a little over 15 hours and so far, most of the tests have come back normal including: white blood count, x-rays and a culture done on the fluid inside one of the fever blisters.

Bottom line is- they are treating him for the most serious of diseases but reassuring us that it is only precautionary and they expect him to just have a minor bacterial infection that will subside with antibiotics and we'll be able to go home- best case scenario is 3 days. I will try to keep posting as we learn any new information. Thank you for your continued love and support.

Picture taken around 5:00 PM
Picture taken at 12:00 AM
Picture taken at 1:30 AM
Not being able to find a good vein, they hooked up to the IV through his scalp
Picture taken at 2:00 AM
Picture taken at 8:00 AM

Friends For Life

And I Quote: “Friends are more important than life itself.

One of my dearest friends (and now sister) once said this and it has become sort of an inside joke. As things get more and more trying, I am seeing this statement confirmed again and again. I find myself thinking I can no longer keep pretending that life is great, that life isn’t knocking me down every time I think I am on solid ground. As of lately, I tend to wallow in the pity a little longer than I probably should and I am quick to list the things that I struggle with.

Taking a step back I see that my Father in Heaven knew that my life would lead me here. Since He loves me- He prepared and groomed other people, through their life experiences, to be placed were they are- and WHO they are- for the support that I would so heavily rely on. Each one of my friends brings support and encouragement to me through their own experiences. Every emotion that I have had, I have a dear friend that has faced the same feelings, fears, concerns and desires that I am going through. When I start to think that no one can understand what I am going through, I immediately know that is not true and I have someone to talk to. Not all of my friends have been through everything I am going through, but collectively they have the life experiences to help me in one way or another. I guess what I am saying is that I am thankful for a loving Father in Heaven that, although He does not take away these trials from me, He prepares people to be here to carry me through life when I cannot pick myself up. If you are reading this, then please understand that I am thankful for YOU. I am thankful for your validation. I am thankful for your understanding. I am thankful for your shoulder to cry on. I am thankful for inspiring people that let me know it’s perfectly okay to be imperfect. I am thankful for people that know when to give me words of comfort and know when to just be with me without words. I am thankful for the prayers that are said in behalf of my family. I am thankful that I can feel of your love.

Home Sweet Home

We are back at home with food in Kent's belly, medications taken and foot elevated. Here is Kent with the Doctor that performed his surgery.

Kent is just beginning to start feeling the "sleepy juice" settling in.

Two hours later, the doctor came out, explained the procedure, and told me everything went well. He walked me through post-op instructions. He told me it would be a few more minutes until I would be able to go back and see Kent, even though I could hear Kent talking with the nurses through the door. The Dr. told me that Kent was jerking around and had been treated for shakes so they wanted him to get more calm before I went back.

Not too long after the Doctor left, a nurse came out and told me I could go see Kent. She also said it took a little while for Kent to come off of the anesthesia, and when he did he was having a lot of pain in his leg, so they put him back under and gave him a block to help subside the pain. They let me go back into the recovery room as he was becoming more coherent.

When I rounded the curtained corner, this is what I saw.

It's hard to see Kent look so fragile, because he is so strong and healthy. I know that the road to recovery is going to be a long and painful one for him, but I am very confident he will make a full recovery and, if we let it, this could be a wonderful teaching lesson for our family. Thank you everyone that expressed your love and support, once again, to our family as we are going through another little hurdle. We could say that so many things keep being thrown at us, but through this we see the blessings we continue to receive and we are thankful for them.

Surgery Day

Sitting in the waiting room, I can hear Kent in the back room retelling the staff about his basketball game that led to this injury. I hear him talking it up and then I hear the nurses laughing. Kent might pretend he hates this, but anyone that knows him- knows that he just MIGHT be getting a little satisfaction from the attention.

Joking aside, Kent is getting prepped for surgery as I type type type on my laptop. The kids are settled with friends (we are quickly becoming the most needy friends you could imagine!). This is not a high risk surgery, it doesn't even require a hospital stay, but any surgery and anesthesia can be unnerving. I look forward to this being over, as I know Kent is, and back on the road to recovery.