Thank you

 I don't have much to update, but I need to say a big thank you. I had so many people reach out to me after my last post. With a new week comes a new refreshed attitude. I appreciate having this blog to journal my feelings and honestly share how I am feeling. This week we had beautiful weather with bright sunshine and warm days. I made a commitment to get out and walk and take some time for me. It definitely left me feeling more joyful. 

 Alex seems to be holding his own. We continue to try and get to the bottom of his increased sleep and fatigue, but overall he is doing well. He is doing amazing with his Invisalign. I cannot believe the difference in his smile already. Maddy had a really good week. She rode three times this week and was all smiles two out of the three days. The third day was a little rougher because she is asked to do more challenging Physical therapy exercises, but she still did a good job and enjoyed herself. She is really doing well for me school wise and her reading is getting better and better. And she is progressing well in ballet, learning more advanced steps. The kids had pulmonogy and opthamology appointments. 

All smiles on Hunter

I think she forgot how to ride Bailey!

When you are nervous to have your eyed dilated, it is best to meditate.

Please continue to pray for us as we navigate these crazy times and try to stay safe with compromised immune systems.

Ali

Not a great new year

 If I am being honest this has not been a great start to 2021 for us!

Maddy has been sick, Alex hasn't felt 100%, Bruce is still going through Chemo and I am missing "normal Life". 

Maddy is finally better after 5 days of being really sick. We are not sure what virus she had, but she ran fevers of 102-104 for 5 days. Luckily it was not Covid.  She is back to school, ballet, and horseback riding now and seems no worse for the wear. She videoed for her first virtual horse show last week. She did amazing. Unfortunately she is dealing with quite a bit of anxiety bleeding into all areas of her life. We are trying to get to the bottom of this and help her deal with her fears. She LOVES every minute at the barn and riding her horses. 

Videoing for her show

Finally lost her other top tooth!

A Painting of one of her horse by an amazing volunteer

As for my Alex...We aren't exactly sure what is going on with him. He is sleeping about 14-16 hours a day and just doesn't feel great. We had two appointments this week, but no one is sure exactly what to make of it. We are just keeping a close eye on him. He continues to work on school and is getting ready to start working on his driver's permit. He has already started fundraising for Cook Children's again. I have added a link to this year's fundraiser to the right side of the blog. 

As for Bruce, he is currently on round 6 of 8 of chemo. Each round he experiences more exhaustion and he is anxious to be done. He met with his oncologist this week. We continue to watch spots on his lungs, kidney and pancreas, but for now all is okay. He LOVES his job with 7-11 and we are so grateful for his job, his boss and the ability to work from home during these crazy times.

For me...Most of you know I try to always remain positive and focus on the bright side. But if I am being honest this last month has been rough on me. I am such an extrovert and after almost a year of being quarantined, I miss people and getting out. One of the ways I always filled that social need was through my workout group. Not being able to workout has been a double whammy. I miss my morning crew and I am frustrated that I am gaining weight. I am anxious for the day I can rejoin my 5 am crew! Anyone who knows me well knows that my biggest source of stress is always money. Even when we are fine, finances cause me anxiety. The start of this year has been laden with a number of bills that just add to my worry. But we are okay and I just need to turn off that voice in my head! When I am having a rough day these two make it better. 

I ask for prayers for Maddy's anxiety, Alex and Bruce's health, and for me to have peace and find ways to connect. Thank you for allowing me this space to be honest even on the days that it is harder to choose joy.

Ali

Poor Maddy

 It has been a rough few days for my poor Maddy Moo. On Saturday she didn't really eat and was complaining of a headache and stomachache but with chronic issues that is not really that uncommon. Sunday she was still complaining of a headache and by bedtime had a fever of 102.2. Yesterday morning she woke up with a fever of 103.4 so I sent a message to our pediatrician who felt like she definitely needed to be seen. He ran a rapid Covid test which was negative and also sent one out which we should get results on by the end of the week. She woke up in the middle of the night with a temp of 104.1. For most of the day is has been in the 103's. Her headache is really bad. She doesn't want to sit or stand so she has been in the bed or lying on the couch since yesterday. I am in communication with our pediatrician and watching her closely, but short of going to the ER there is nothing more we can do. I am grateful for her feeding tube and the ability to keep her hydrated and give her calories. Please continue to pray she improves.

Before Maddy started to feel bad we enjoyed some fun days! We played quite a few fun board and card games as a family and even tried to enjoy the snow flurries! We also jumped back into school and ballet! Maddy continues to improve in her reading and "loves" school. Alex is working towards graduation and starting to work on getting his learners permit to drive. He is doing INCREDIBLE with his invisalign and we are seeing huge changes in his smile already.  Bruce is almost done with his fifth round of chemo. I love getting to watch my kids as they grow and share their love with each other. Despite ten years age difference they are truly the best of friends. I am so grateful they have each other during these lonely days of Covid. Once again we saw God's work when two of his angels blessed us when we did not receive our stimulus as expected. I continue to be reminded to trust and believe during hard times.

Please continue to pray for health for all of our family.

Ali

Happy New Year!

 I cannot believe it is January 1st already! The last few weeks flew by as we prepared for Christmas. It was a few weeks filled with Horseback riding and family time. 

While 2020 was not the year any of us hoped for or expected, it did have some real positives for us! The biggest and best blessing has been Mimi and PopPop moving to Texas. It has been even better than any of us expected. Mom and I love running our errands together, we have weekly family dinners that often include game night and the kids love being able to pop over or ask Mimi and PopPop to come over here. In a season that can be lonely with quarantine, it has been amazing to have loved ones to share life with. It has also been a year where I have watched Maddy blossom. In school, ballet, and horseback riding she continues to grow in skill, in confidence and joy. 

Maddy loves the staff and volunteers at VTC

A quick outdoor visit with the Glenn's. 
We have missed them SO much!

Maddy in her happy place.

In the Sleigh PopPop built

Christmas Eve looked a little different this year

Christmas morning

New Year's Eve Games

2020 had its hard times as well with a major surgery for Alex, some medical issues for Maddy and Bruce's cancer diagnosis and treatment. We have also watched friend's struggle. having medically fragile kids is an isolating life that not many can understand. Because of this reality we have made friends all over the country who share similar experiences and offer support. We are a small close knit community. Many of us have been friends for years and we have often connected in person on occasion. We share in each others joys and sorrows and unfortunately through the years that has meant the loss of many children I have grown to love. This week we lost yet another warrior too soon (not Covid related). It is heartbreaking on so many levels. I grieve for a mother who has to say goodbye to soon, for siblings who lose their best friends, for a loss of dreams, but I am also forced to imagine a reality I try not to think about. As we all live in these scary, uncertain times of Covid-19, please offer grace to those of us who have medically fragile family members who may have to make different choices than we would otherwise, those who can not so easily join in outings or go to a restaurant for fear of the ramifications. 

As for a medical update...the kids are pretty much status quo. We have a HUGE number of appointments in January and February so more to report soon. Bruce saw the pancreatic specialist the week of Christmas. He is scheduled for an endoscopic ultrasound to look more closely at the spots and potentially take biopsies. Please continue to pray for all of us.

My kids would tell you that the two phrases (other than I love you) that I say to them most often are be kind and choose joy. As we move into 2021 may be do so with Kindness and Joy in our hearts.

Ali