Long update on the past few weeks

The last few weeks have been busy and have had lots of highs and lows. As many of our activities came to a close over the past two weeks, I have really had a chance to think back over the past 9 months and a what a contrast it has been for my two kiddos.

I have seen so much growth in Maddy this year. I watched her thrive in school, find a passion for dance and make friends. She has become more confident and independent. It is so fun to watch her. She is passionate about life and every part of it...she laughs a lot, she gets really mad and she loves big. She has the sweetest heart, she is a nurturer. She loves to help me. And yet she is the most strong willed, stubborn girl I have ever met. I know it will serve her well and yet some days she makes me crazy! This year has been the best year of her life and I can't wait to see what the next year brings.

On the other hand this has been one of the toughest years for Alex. He has struggled with one illness after another and many setbacks as he tries to recover. He has had to skip more events and activities then I care to count. It has been so hard to watch him struggle with pain, fatigue and just not feeling well month after month. It breaks my heart as he has to choose between time with friends and activities he loves verse being able to muster the energy to get out of bed and participate. His life feels so unfair so much of the time. And still I watch his perseverance, his tenacity, his incredible strength and most of all his courage to push himself, to find joy and to inspire others.

The medical side of things...Maddy started on the same immune replacement medicine that Alex is on. It is an infusion that involves two needles a week and runs for about an hour and a half. She has done great!

Alex has had a busy two weeks medically. We got more information from the nephrologist. His kidneys are not processing correctly and are causing him to dump too much calcium. He also has low citrate in his urine. We have started two new medications and he is already having relief from the symptoms he was having (similar to a UTI). Unfortunately he spiked a fever last Friday night and we wound up in the hospital for 3 nights. We are still on antibiotics for a possible infection although most likely it was just a false positive.

We have also managed to fit in lots of fun!

Maddy and "her" Mrs. Mitchell

Sometimes you just need time with your pup!

At the hospital for an appointment

At the park

Helping Daddy wash the truck

Mad took a class at TBT

Violin Lesson

Through it all these two stick together!

Alex's Improv Performance

Girls day with Mrs. Mitchell

Dress Rehearsal

Recital

Ice Cream Treat!

Please continue to pray fro Alex's health both physically and emotionally. Thank you for loving us well through all the ups and downs.

Ali

Happy Mother's Day!

Happy Mother's Day!

When Alex and I speak, I often start with the phrase that "All I ever wanted was to be a mother, but motherhood hasn't looked like I thought it would!" Anyone who knows me, knows that my whole life I desperately wanted to be a Mom. And this definitely isn't how I envisioned motherhood. But I am so blessed to be able to be Mom to my two amazing babies. They are the strongest, most courageous, determined, joyful people I know. I have experienced incredible highs and lows, but I wouldn't change it for a second. 

I was raised by a mother who has been my rock. She taught me about strength, believing in myself and loving unconditionally. She has been with me through every phase of my life she is my best friend and confidant. I hope I make her proud as a mom and that some day my kids are able to look back on this life and know that no matter what I loved them more then anything like I can.

This week has been bittersweet. My sweet girl had her last day of school. Building Blocks has been such a gift this year. I have watched Maddy grow and thrive. She has learned a lot, but more importantly she has been loved so completely. She has gained confidence, made friends and stolen the hearts of her teachers. I am so grateful for her year and looking forward to what next year brings. On Thursday, they had a water play day and popsicles to finish out their year!

On Tuesday and Friday we spent time with our beloved "family" at the Cook Children's health Foundation working on some events to help people understand how amazing Cook Children's is! We are so lucky to have such an amazing hospital so close to home. 

On Saturday, Maddy and I went to Taste Buds Kitchen to have a Mother's Day tea party. We are so grateful to Hopekids for all the events that help us create memories. 

For Alex the week has been a little rough. We are still trying to sort out what is going on with his kidneys. He hasn't felt well and answers are taking longer then we would like! He did get some exciting news late this week as he got a speaking role in our Summer Theater Production of Annie jr. at church! We have an awesome summer with lots of exciting things coming up so we need to get him feeling better!

Please pray for Alex's health and more joyful fun this summer!

Ali

Good week with a new medical issue

Overall this was a great week with lots of fun!

Last Sunday, Maddy went to a birthday party and went "Unicorn Backing" as she calls it. I had not told her there would be pony rides and she was SO excited. Most of the other kids rode a little and played a little, but Maddy was with the ponies the whole time. This girl loves her horses.

On Tuesday evening Maddy had her Spring Performance at school. She had told us for weeks that she was NOT going to sing. She told her teachers she would just stand and look cute. I was really proud of her for singing all three songs!

Friday night we got the opportunity to go to Legoland with Hopekids to celebrate their 5th birthday. We always enjoy our Hopekids events and are so grateful for the opportunity to create amazing memories as a family. 

Sunday we had another awesome day as we went with Katie and Wyatt (and Townes) out to visit Katie's horse Bailey. I think this could become a regular outing this summer!

Best Buddies

Sweet Bailey

No Fear...even on a HUGE horse!

Always laughing together

Yesterday, Maddy had her picture day for her dance recital. She has LOVED dance this year. She has a sweet class and I have really enjoyed watching them all grow this year. I was able to snap a few pictures through the studio window, but better pics to come!

My Beautiful Ballerina!

Here are some more of our bluebonnet pictures! Tina W. Photography did such an awesome job catching the kids personalities, especially Maddy!

Overall the last week has been full of smiles and fun times. The only negative is Alex has developed an issue with his kidneys. We are still trying to determine what is going on. What looked like a UTI is not and is a bigger issue. We have had two trips to the doctor and have a slew of tests to complete before we can figure out exactly what is wrong and then we can come up with a treatment plan.

Thank you for loving our family through all the ups and downs.

Ali