School and Surgery

This week seems to have flown by! It was Maddy's first week back to school. She was counting down the days until she could see her friends and teachers again. By Tuesday morning she was almost giddy with excitement. I am so happy that she loves school, her teachers and her friends so dearly.

Tuesday we declared "best friend day". Alex and I (and Maddy) miss Erin dearly. But our friendship continues even though she no longer spends half her week with us. Erin and I got to spend some time enjoying each other and catching up while Alex and I managed to get some cuddles from precious Greyson. Oh and Mia had to get love from her Erin too!

Wednesday Alex had a "surgery" as he would call it. He had multiple procedures all done under anesthesia. He had an endoscopy, both of his feeding tubes changed, a deep dental cleaning and two teeth extracted. It has been amazing to watch him grow and mature over the past few years. A procedure like this (or really any anesthesia) was once enough to cause weeks of worry, interrupted sleep and lots of tears. Wednesday he handled himself with bravery and strength and didn't even show any signs of fear until the final moments before he had to say goodbye to me. and then in true Alex fashion, he asked me to pray with him. And so together we held hands and prayed for peace and for Alex to know he is never alone. We recited a bible verse and kissed goodbye. For 14 years, we have been a team my brave son and I. While I wish I could make his life easier, I am grateful for the way this life has shaped my view on so many things. I am truly changed because of the miracle I gave birth too. Knowing the day would not be easy, we had some special people step up to make it as easy as possible. My dear friend, Stephanie offered to keep Maddy after school so I wouldn't have to worry about what time we got home. Our angel, Sonny, who is the dearest friend to Alex came up and brought me coffee and kept me company so the time would pass more quickly. Beverly, Zoey's trainer sent pictures of our girl to put a smile on Alex's face when nothing else could. The sweet people that have been placed in our life make each day so much better. 

Bev always sends the best commentary

"Hi Alex"

"I spilled the water"

 "And I don't care"

"Am I still in Trouble?"

Maddy and Ally hanging out after school!

Alex is doing really well. He is still a little tired, but doing really well overall.

We continue to feel blessed by the love and support of those who walk beside us on this journey. Thank you for your love and prayers.

Ali

Zoey's Fundraiser

A New Year

We had a very quiet and relaxing end to the year. My Dad was here to visit from December 23 through the 27th. Everyone has stayed healthy. We have mainly just enjoyed time together as a family playing games and enjoying being together.

Picking Grandpa up at the airport

Making Reindeer food

Christmas Eve Service at Church

Christmas Morning

Every princess needs a Tiara to ride her bike

Last Friday we had an appointment with our GI doctor. He is thrilled with how Maddy is doing overall. Since her Feeding Tube was placed she has caught up to the size she should be. She made huge strides in Therapy and is thriving in school. We tweaked medications a little to help her reflux and constipation, but overall she is good to go.

We discussed some big changes with Alex. Our endocrinologist had asked us to discuss a major surgery that may be necessary in the future due to all the bouts of pancreatitis he has had. we did discuss it with Dr. O, but he doesn't feel like we are there yet, so we tabled the discussion for now. We made some changes to his TPN (IV Nutrition). The biggest surprise was that Dr. O has gotten FDA approval to use a medication with 5 patients that was pulled off the market years ago. He has decided Alex is a perfect candidate. We are still in the process of doing some initial testing, checking with other doctors and signing consents. If we can get this medication, the hope is that we could get enough feeds going through his feeding tube that we could just do TPN overnight.

On New Year's, Alex, Maddy and I took on a project we have wanted to do for some time. We went to the store and got enough supplies to make 10 "blessing bags". We will keep these bags full of necessities with us to hand out when we see a Homeless person. (We see them on almost every trip to the hospital). We even included a bible verse on Hope.

Our supplies

Filling the bags

Adding our bible verse

10 bags ready to go

Maddy had discovered the game of Life!

A Zoey Update... Zoey has now been gone 1 month. We were originally told it could take between one and six months. We miss everything about her. We miss her cuddles, her "eyes", her constant presence. 

In her down-stay at Walmart

She is continuing to work hard and make progress. She is consistently holding her down stay at Walmart even with kids and carts going by. She is still working on her confidence so they can once again begin their scent training. We are continuing to fundraise. We currently have enough for 3 months of training. We are so very grateful to all of the friends and family who have shared, donated and prayed with us to make this happen. I wish we had enough disposable income to just pay for it ourselves unfortunately that is not the case, so we feel blessed that others are joining us on this journey. If you would like to help in whatever way, here is the link: Zoey's Fundraiser.

My prayer is that this new year is one filled with good health, happiness, and amazing memories.

Ali

Angels Among Us

Anyone who has followed my blog for a while knows that I love the song Angels Among Us. Starting as a young girl I collected angels and I truly believe there are angels on this earth that show us God's love. The chorus of the song is the following:

Oh, I believe there are Angels Among Us,

Sent down to us from somewhere up above.

They come to you and me in our darkest hours

To show us how to live

To teach us how to give

To guide us with a light of love.

Tuesday was a crazy day with both kids having performances spaced an hour apart. I started the morning at Mad's school to watch her in her Christmas performance. I was so proud of her and how far she has come. Last year she did not sing and turned so the audience couldn't see her because she was so nervous to be in front of everyone. This year she sang every word, did her hand motions and enjoyed every minute. I love watching her grow in her confidence and belief in herself.  

A small clip of one of her songs.

Maddy and Mrs. Mitchell

As soon as Maddy's performance was over I rushed to the hospital where Alex was asked to be a special guest in their winter concert featuring some famous country singers including Neil McCoy, Josh Weathers, and our beloved Sonny Burgess along with others. Alex and Sonny had been working on the first few measures of Silent Night. As I looked around the Atrium of the hospital, I saw so many angels who have touched our lives over the past years. From VP's of the hospital, child life specialists, nurses, managers, our girls from the Foundation, doctors even Alex's therapist came to see him perform and support him. I was in tears as I watched Alex play his Violin in public for the first time. To see all that he has accomplished in his life amazes me. And then josh Weathers started to sing Angels Among Us. I cannot imagine there is a more fitting song to describe how we feel about the staff of Cook Children's hospital.

He was only supposed to play a few measures, but he played the whole song...I will post that video on FB because it is too big for here!

Alex with everyone who took part in the concert

Alex and Bobby

Alex with our "Foundation girls"

Alex and Josh

Alex and Raymond

Alex, Sonny and crew

Alex with Sonny, Bobby and his new violin

The rest of the week has been just preparing for Christmas. Yesterday we took nine dozen cookies to our nurses in the hospital. They did so much last year to make our holiday as special as possible while we were inpatient. We wanted them to know they are loved and appreciated.

Our sweet Mia

Maddy with Peaks after delivering cookies

Elfie brought Maddy a new nightgown

Bug decided new year, new haircut. I love it, but he looks so old!

My Zoey update...I spoke to Beverly, our trainer for a bit today. Let me start by saying that I am so grateful  to have a trainer who one: knows what she is doing and two: cares enough to make sure that Zoey is trained completely to do everything possible to be able to save Alex's life. The good news is that her "stay" is completely done. She is staying for two hours off leash with no attempts to move. The not so good is that breaking her fear is a little trickier. Zoey has been timid, skittish and easily frightened since we got her. Bev has seen that play out. We need to break that before we move on with her training. If she is so worried about what is going on she cannot focus on Alex and do her job. It came to a bit of a head today. Bev decided to try and get a Christmas picture to send us. (Have I mentioned I LOVE her). Zoey was SO scared of this snowman. It took Bev over 10 min to get her this close to the decoration. I mean you can all see how scary that snowman is right????

"I'm not going to win, Bev, am I?"

As a reward Bev removed the snowman

But she did need to stay by him for a bit!

So Bev called to tell me where we stand. She has done enough scent work with Zoey to know that she is extremely intelligent and will have no problem picking that up. However, she is stopping the scent training for right now to work on trust and getting Zoey to see that the world is not scary. Please pray for Zoey to catch on so our sweet girl can finish her work and come home to us. In the mean time we will continue to pray and fundraise knowing that when she gets home she will be doing exactly what she needs to. If you would like to help us please continue to share Zoey's Fundraiser. Obviously the longer she is there the more we need to raise. We are so very grateful to everyone who has helped already!

We hope everyone has a very Merry Christmas and spends the next few days making lasting memories with friends and family.

Ali