Happy 7th Birthday, Maddy!

 

To my precious Maddy Moo-

This birthday is not what we thought it would be. This crazy year meant no party and no trick or treating. But in true fashion you were able to find joy by doing all the things you love most. We played with Brookie, we spent time with Mimi and PopPop, you trained your dog Hart and you went had a horseback riding lesson. You my sweet girl are such a bundle of emotions. You live big. Whether you are happy, sad, angry or scared you let those emotions show. You love fiercely. Your family, your friends, your dogs , your horses and most especially your brother. You are smart. You are funny. You are such a hard worker. You are such a beautiful ballerina. Your passion for horses continues to grow. You would rather be with horses than anything else. You will willingly pick up poop, muck stalls, tack, groom, whatever needs to be done at the barn. I love to watch your personality continue to shine in all you do. You are so loved my little redhead!

Love,

Mommy

If you are still wanting to support Alex, Please visit his fundraiser : Alex's Extra Life Fundraiser

Ups and Downs

 This has been a week of ups and downs. I continue to be so grateful for the people around us and the amount of love that surrounds my kids on a daily basis. Mimi and PopPop are settled in and we get to see them several times a week. It is so nice to have them here to share in the everyday moments of life and the special events. 

This week I spoke at two separate events and after six months if felt good to be back to sharing our story to try and help others. The first was for a safety board at the hospital and the second was a fundraiser for Maddy's therapy center. 

The kids are doing pretty well. Alex went to the dentist this week. He would really like to try and get braces, but is worried about his ability to handle the initial placement. Please pray for him as this is something he really wants and needs to feel better about himself. 

Bruce is about to start another round of Chemo. He has done pretty well so far, but did experience fatigue and some GI issues. He also has some labs that are off so they are watching those. WE are still waiting on results from the MRI of his kidney. We are praying that the spot they saw is not cancer. 

I am hanging in there. I am just incredibly tired and busy. It is exhausting to physically and emotionally make sure everyone is cared for. I am also such a people person and the isolation of coronavirus after all these months takes its toll. I am also struggling to offer grace to all the people complaining about the activities they are missing. Alex has missed out on almost every right of passage of childhood due to his disease. We have friends who lost their children at young ages. Watching constant complaining about a few weeks of quarantine from school and how "unfair" it is has been hard for me. 

For most of the kids lives I have tried to instill in them a spirit of generosity and serving others. Most often it has come in the form of giving back to the hospitals and organizations that have been so kind to us and been such a huge part of our lives. Alex has taken that spirit to heart and works hard year after year to Fundraise for Cook Children's Hospital. His favorite event of the year is a 24 hour gaming marathon. Extra Life is on November 7th. Typically Alex spends close to 12 hours gaming with two different groups who are committed to raising money for Cooks. It is a day he looks forward to all year. This year there will be no event to attend, but that hasn't stopped Alex from setting his goals and still trying to raise Money. If you are interested in helping him reach his goal to make life in the hospital easier for other kids, please visit his page:

Alex's Extra Life Page

Thank you to those of you who continue to check in on us and share in our life.

Ali

Family Times

 This month is flying by. Frequently people talk about how busy November and December are with the holidays. For the past 6 years, it is October for me. With Halloween and Maddy's birthday plus a number of doctor's appointments, October just fills up for me. It is a mix of fun and medical, but it is always busy.

Quick update on the crew and then some pictures...

Alex is doing pretty well. He continues to have pancreatitis and we are in the process of considering some new pain control options. He is otherwise feeling well. He had his first in person activity in over six months and he really enjoyed seeing his friends! He is a representative on our church Youth Council and they had a meeting to plan out some activities for the year. being with friends in a safe socially distanced environment was so good for Alex. He continues to plug away at school. He loves his video games and horror movies and is watching a number of TV series to fill his time. He misses his speaking and fundraising for the hospital as well as seeing Sonny for his weekly Violin lesson. Even though he cannot attend his all day gaming event this year he is trying hard to raise $5000 for Cook Children's through his fundraiser. I will post the link at the bottom if you are interested in helping him reach his goal. (BTW, it is much harder to get pictures of 16 y.o.)

Maddy Moo is living her best life. We are doing school 4 morning a week. She spends the rest of her days with private ballet, private art, and two days horseback riding at her PT center. She loves seeing Mimi and PopPop most days and playing horses all day long. She is loving Hart and is excellent about helping care for him. He follows her everywhere and already responds to her better than anyone else. Their connection is really incredible. I have never seen anything like it in a puppy this young.

Bruce has started his chemotherapy and is doing okay. He is experiencing some fatigue and nausea, but overall it hasn't been too bad. We are grateful for his job working from home and his incredible boss so he has been able to continue working so far.

I had to make the hard decision to resign from my job this month. Between Maddy's schooling, the kids health care needs and Bruce's medical challenges there just aren't enough hours in the day for me to do any more. I am still serving on several committees at the hospital and leading the Mom's bible study at church. 

These days and our life are not always easy, but I look around and am so grateful for the life we have. Our life is blessed by so many people we would never have met if not for the kids medical issues. I have watched friendships deepen, faith grow and family bonds strengthen. I am a better person because of the life I have been called to live.

Thank you for making our lives better by being a part of it.

Ali

If you would like to help Alex reach his goal, please Click here. 

Busy Times

 So much of the last two weeks has been centered around adjusting to having a new "baby" at home. Really Hart has been as close to a perfect puppy as you could ask for, but he is still a puppy which means we are all busy keeping an eye on him and making sure he doesn't get into trouble! We are all head over heels in love with him, but he is definitely Maddy's pup. He follows her everywhere and is already listening to her better than the rest of us. He will sit for her, come for her and went on his first walk today after completely his puppy shots a few days ago. He has only had a handful of accidents. Mainly he just wants to chew on anything in sight. He is really calm, but loves to play with the other dogs in the yard. And he LOVES to eat! We are excited to get him in some basic obedience training soon so his behavior will be even better.

In other news....Maddy is enjoying art and ballet. She is still passionate about horses and has become quite a good reader. Alex is trucking along with his school work.

Bruce is doing pretty well. He will see a new doctor next week to discuss the spot on his kidney and what further testing is needed. 

I let my boss know that I was going to resign last week. It was a hard decision, but I know I need to focus on caring for our family during this time.

Please continue to pray for us all as we take one step at a time.

Ali