Alex and Maddy

Sunday, January 31, 2021

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

Sunday, January 24, 2021

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

Tuesday, January 12, 2021

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