Three....Two...One...Ideas!

Loving this party idea

"Hi June!"

Wishing I could be with these girls! Love you!

Pouf!

Is it too soon to start making a Christmas list, because I saw these 'poufs' and want some for the playroom! I am in love with the knit ones, but you could have so much fun with the patterned ones also.

This flower one is gorgeous!

My Quotable Kid

Example #!:

As you see, Kent got a Ken doll today (yes Kent got it- not Ella) for Christmas which he is endearingly calling his "Kent doll." Ella has loved having him play Barbies with her. They took all the dolls over to the couch to watch the "Barbie Nutcracker" movie.

When the movie finally finished Kent asked Ella, "How did the Barbies like the movie?"

Ella looked at Kent and matter-of-factly said, "Dad, the Barbies are fake!"

Example #2:

Ella having a blister on her heel. "I wish we could just go to the skin store and buy me some new skin."

Good Morning Christmas

A Very Merry Christmas Eve

The hospital is an emotional place for me. I haven't spent as much time as a lot of other Menke's parents, but I've spent more than I've wanted to- especially this month. On December 1st, I was determined to make this the best month of Christmas cheer as possible. The future is so fragile and unknown that I wanted Ethan and Ella to remember this Christmas for the rest of their lives. I don't want them to remember what gifts Santa brought them, I want them to remember the feeling they had surrounding this Christmas. Going to the NIH ended up taking us away from the kids longer than we expected which slowed me down with the Christmas cheer. Again with Cannon's surgery I have found myself putting Christmas on the back burner. Yesterday we were eating fast-food at a burger place. I asked the kids if they were excited about Christmas Eve being tomorrow and Ethan said, "Oh yeah! I forgot. No one seems to be excited about it- it just seems like another day." My heart broke! That is not acceptable. That comment made me more anxious than ever to get my family home and cuddled up under our Christmas tree doing Christmas activities. This morning we packed up our car and pointed ourselves home. We ordered pizza, made cookies, put on our Christmas pajamas and watched a Christmas show. It was exactly what we all needed. Gary and Katie Martin stopped by and brought with them some Christmas cheer, it reminded me of just how happy I am to be home. Along with the cheer, they brought us some Welch's Sparkling Cider made from the grapes in their vineyard! Yumm. We all had a glass (or two).

Then we had a family game of Candyland with real candy so if you landed on it, you were able to eat the coordinating candy.

As we were getting ready to read the account of Jesus' birth from the Bible, we heard some singing in our front yard. We gathered as a family and opened the door to see this:

The most beautiful group of carolers I had ever seen. Some faces I knew and some I didn't (Derek Weaver's family was visiting from out of state,wasn't that nice of them to come sing to strangers on their Christmas Eve?) but I could feel the love from all of them. Reagran's family revealed they were our Christmas Ghost that has been delivering Christmas cheer to us. We really missed it while we were gone. As they sang Christmas songs and passed out even more gifts, we were so happy to be thought of in such a loving way. The carols concluded with a hymn called "Families Can Be Together Forever."

Here are the lyrics:

"I have a family here on Earth

They are so good to me

I want to share my life with them through all Eternity

Families Can Be Together Forever

Through Heavenly Father's Plan

I Always Want to Be with My Own Family

And the Lord Has shown me how I can

The Lord Has shown me how I can."

These words hit Kent and I so deeply, as with what we are facing, we are so thankful that we can live forever as a family. As I described, my little family has been on an up and down roller coaster, trying to focus on Christmas but having some bumps along the way. Returning to our comfortable home, being greeted and loved my wonderful friends as close as family rushed the Christmas spirit into our hearts. We are so thankful for angels in our lives that remind us of the true meaning of Christmas. Thank you for all you do.

We finished our Christmas Eve traditions with the nativity scene. Ella was so excited to be in "a play". Who doesn't just love a Mary and Joseph that took a unicorn to Bethlehem? Yes, that is a sparkling cider mustache you see on Mary. Nonetheless, it was a happy and spiritual night that perfectly set the mood for Christmas morning.

Seattle and Hospital Pictures

I never thought we would be learning how to feed our baby through a G-tube. One more thing to add to the list of things I never expected for our family. Yet, here we are. Ethan and Ella had a great time in the siblings room, playing basketball and painting.


Ethan and Ella had their picture taken with my dear friend, Beluga. We have had lots of trips to Seattle and I am hoping that the kids still see it as mini vacations, something they look forward to. Having a hotel with a pool, helps keep things fun!

Upon Further Inspection

In the light of day, I began to piece together what had happened during the surgery, since no one that was there for the entire surgery came to tell me how things went with anesthesia. The first clue that told me it was hard for them to find a vein was the fact that Cannon had a band-aid on his head because they had to run the IV from his scalp.

Next, I noticed some bruising on his little wrist. I began counting all the little needle pricks in his hands and feet, the attempts to find a vein, and my heart broke yet again for my sweet little baby.

Our sweet neighbors in Sunnyside, had this gift delivered to our room. Cannon enjoyed watching the balloon move around and his feet love the little slippers that they sent. Thank you!

My Heart is Full

You could say that it has been a long day. I would agree. It began this morning at 2:00am when Cannon woke up. That was the last time I was able to feed him through his NG tube. The reason is because he had to be fasting for his G-tube surgery set for 12:15 today. We (George, Laura, Ethan, Ella, myself and Cannon) went down to the lobby of our hotel to fill our plates with the breakfast that would give us the energy needed to do all we were to do today. Cannon was particularly good and happy. At 10:13 I looked the clock next to my hotel bed and made a wish on my lucky number that today was going to be a good day. Cannon continued to be patient and calm as we hustled around getting ourselves ready. We arrived at the hospital promptly at 10:56 to check in for our 11:00 check in time. We signed Ethan and Ella in to the sibling's playroom and then sat ourselves down, with our pager, to wait for the Dr. to meet with us and give us final clearance for Cannon's surgery.

The clearance for surgery relied on our biggest concern; having Cannon under anesthesia with his hypotonia and respiratory issues. We met with each nurse and doctor individually to go over the procedures and expectations. It was after this that we received confirmation that he was able to have to the surgery. I took off the clothes I had picked out for him, the ones I made sure were the warmest and softest. I thoughtfully put his little hospital gown on and kissed my favorite kissy spot, the bridge of his nose right between those angelic eyes. He seemed to understand what would be happening today as I lovingly wrapped him in a blanket and I watched the nurse scoop up my precious little baby. As she walked side by side with the anesthesiologist down the hall to the operating room, I felt as if my heart was being carried down the hall with them- as I guess it very well was, wasn't it?

I was sent out the opposite door, but I did not go out until my swaddled baby was out of my sight. I was told the procedure only takes about 20 minutes so I should wait in the waiting area for the surgeon to come give tell me how it went. While we were discussing feeding options with the dietician, as promised, the surgeon came to tell me the update. He assured me that the endoscopy and g-tube placement went smoothly. (I have some amazing pictures of the inside of my little man's belly.) I could breathe a little sigh of relief. My lungs were still full though, because I was holding my breath until I heard from anesthesia that he was awake and no complications came from his underlying conditions. Forty-five minutes was the quoted time frame I was holding on to. After an hour, I reminded myself that some kids can be a little slower to wake. At one hour and fifteen minutes, I allowed myself another 20 minutes before I could be worried. George and Laura picked up Ethan and Ella from the siblings room and took them down the street to get some lunch. At 3:16 I made a wish on Kent's lucky number that everything was still okay. I was waiting by the gray doors they pointed me to and with each door opening, I tightened a little, hoping to see the familiar face of the doctor that I trusted with my baby. Each time a doctor came out that I did not recognize, my heart sunk a little lower. With cell service going in and out at the hospital to keep in touch, and my family not with me, it was getting harder for me to keep my strength up on my own.

Side note: I just have to say how thankful I was to have my laptop with me (the Christmas present Kent got for me while at the NIH) so I could keep in touch with so many caring people through Facebook- hah! yes, I realize how totally ridiculous it is that I just said Facebook was my companion today. It was the loving thoughts and prayers that weren't sent my way that let me know I was being supported and loved by so many people.

By 4:00 my mind was tired of sitting in the waiting room with me so it began to wonder. This was not a good thing. I said a little prayer that I could talk to Kent and for a moment I received cell service. I quickly called Kent to ask him how long it usually took for his dental patients to come out of anesthesia and he felt like I had been waiting a little too long also. By this time George and Laura had finished lunch so I went and asked the receptionist if she had any news. She made a call and found that he was doing fine, but still in recovery. We were handed a map and pointed in the direction of the Rocket elevators, that led to the Giraffe hall, where we would find the room we could wait to meet Cannon in. We got settled in his room and waited. It was while recording a video with Ethan and Ella for Kent that I heard a cry that I could not mistake. My heart cried back and I immediately got to my feet and longingly looked out the doorway to see my baby. His cry was different but unmistakeably the cry I have been waiting for for too many hours. In anticipation, I hurried and sanitized my hands and stretched my arms out, aching for them to be full. Full they became. Full of my sweet Cannon. Full of new obstacles, full of new questions, full of wires, full of tubes and full of complete gratitude that my baby was back where he was always supposed to be.

Many times today I have had tears well up in my eyes and I have swallowed them away. Now as I sit in the quiet darkness of room number #2019, playing Cannon's favorite music and listening to the snoring baby I missed so much all day, I let the tears flow. I let them come. I let my strength melt away as I am enveloped by the love I have for this precious little boy who teaches me so much about myself every day.