Alex and Maddy

Alex and Maddy

Friday, January 27, 2017


When I started this blog almost 10 years ago, I promised myself that I would be honest. So while I always try to focus on the positive, I also need to be honest about he struggles we face. So while we continue to struggle with the kids not feeling well, we are CHOOSING to march on and try to find joy in our days. Thank you to all of you who reached out last week. Your friendship, your support, your prayers mean so much.

Alex continues to suffer from significant stomach pain. Alex stomachs hurts every day (and has since he first told me when he was 2) and he never complains. It is just a fact of life for him. But this is something new and has him telling me he hurts and even asked to lower his feeds. We are trying to get tot he bottom of what is going on. We see GI on Tuesday and he will have an endoscopy on Wednesday. In the meantime, he perseveres in a way that always amazes me and still managed to go to violin, acting and golf this week as well as tag along to Maddy's cooking class. One bright spot has been watching the bond between Alex and Zoey (Alex's service dog) grow closer. Zoey's ability to detect and alert when Alex isn't feeling well is incredible. Now if we could just nail down some of her more "basic" training, it would be great. She will be going back to the trainer over the next few weeks which is always a hard transition.

Maddy is Maddy. She is such a hot mess. She can be so sweet, but she is so sassy and so stubborn. She drives this mama crazy most days. But just when I think I may kill her, she says or does the sweetest things! She also isn't feeling great, but it isn't quite as clear. She is just really fatigued and fussy. She is struggling in therapy and when things are hard for Maddy she isn't very nice to deal with! Her poor therapists have been through the ringer with her this week. We have some amazing friends in our lives and one special family gifted Maddy a hot wheels ride on for Christmas. It took us a few weeks for the weather to cooperate enough to enjoy it, but boy has that brought some smiles this week. Maddy wants to ride her "speed racer" all day, every day.

We are so grateful for all of our friends and family who smile with us through the good times and support us during the hard times. We are so hopeful that days of feeling better are just around the corner.


Friday, January 20, 2017

Rough Week

We have had a hard week on a few fronts.

Neither one of the kids has felt great this week. Alex is having some increased GI pain and nausea that we are trying to sort out. He also had a seizure yesterday when I was out with Maddy. This morning we had to leave our first Homeschool Co-op of the year early because he wasn't feeling well. We are hoping we can figure out what is going on and get him back to feeling better!

Maddy has been fighting cold symptoms all week and has been especially whiny and fussy. She has had trouble in therapy all week. And is complaining of a sore throat this afternoon.

And then....Our beloved nurse, Anaise is needing to leave us to focus on her family. She has been a perfect fit for us as she was incredibly helpful to me and she has a GREAT relationship with both Alex and Maddy. She is sweet, calm and loving and has really been a great fit. We wish her nothing but the best. Now the search is on to try and find someone equally as good to take over.

Sorry for the short update, but I am running on fumes this week.
 My Crazy Girl!
 Trying to smile for Mommy!
 Crazy hair
 One of many hugs they share every day.
 They really do have fun together
 This sweet girl is alerting and letting us know when her boy needs help.
Mia gets lots of extra "love" from Maddy

Friday, January 13, 2017

Back to the Grind

This week was the week that all of our activities geared back up. It is always exciting and exhausting to get back to the full schedule of all of our activities and appointments.

Maddy:  Maddy's schedule is pretty busy with therapy three times a week. In therapy she is working on jumping forward and off things in Physical Therapy as well as over all strengthening and endurance. In Occupational Therapy she is working hard on dressing and undressing, using scissors, holding a crayon correctly and strengthening those hands that do not like to work!
Maddy chooses a mix of blue and pink kinesio tape.

She cooks on Monday's at Taste Buds Kitchen which is owned by one of my best friends. Maddy loves to cook and especially to eat! She thinks it is even more fun when Edee teaches her class. Maddy was in RARE form on Monday since Eden was there, but enjoyed every minute.
 Stirring the dry ingredients

 Adding in the wet ingredients

 Mini Bundt Cakes

Getting ready to eat!

Wednesday we were back to Kindermusik. Maddy loves music and enjoyed a new teacher this week. She has been taking music since she was 2 months old so she was happy to be back after a few weeks off. 

Alex: Alex was BUSY this week! He was really excited to be back to some private Tae Kwon Do lessons thanks to the generosity of some family members. What an awesome Christmas gift to be able to get back to lessons. Kick Tiger Martial Arts is such a special place to us. It is a family run business and they definitely treat us like part of that family. The two sons who teach the classes have always treated Alex with so much patience, kindness and respect while pushing him to be the best he can be. It was so nice to see these two back together again!

Master Jaren and Alex hard at work

Alex also had his second violin lesson and first acting class.

His final activity for the week was to return to golf. He is in his third level of The First Tee. It is an incredible program that teaches 9 core values while teaching the game of golf. 
 It is such a joy to see him explore new adventures and find his passions...Plus it gets him off his video games for a while!

Between all of our fun we did have to fit in an "emergency" visit to deal with a malfunctioning port. Luckily, Alex's hematologist saved us a trip to the ER and set it up in the Infusion center. They even managed to set it up so we could start in the infusion center, leave so Alex could film an interview for the hospital and then come back to finish. While Alex was doing all of that, Maddy was able to work/play with a Child Life Specialist to try and make her frequent lab draws a little easier.
 Maddy and Amy taking blood from her Puppy

  I am constantly reminded of the incredible village that surrounds us and helps us on that journey. The staff at Cook Children's Hospital are a huge part of that village. Watching them rally around my children and love them and do everything to make this life a little easier is such a blessing. 


Friday, January 6, 2017

New Year, New Commitment

As we came to the end of last year, I realized I wanted to really evaluate my priorities and make sure that where and I how I am devoting my time is in a way that honors what is important to me and my family. I have spent much of the past few weeks looking at what those priorities are and what my goals are for 2017. In the midst of these evaluations, one of my realizations is that I want to get back to updating this blog on a far more regular basis. So one of my goals for 2017 is to update this blog each Friday. Hope you enjoy catching up with us on a more regular basis again!

At the end of each year and specifically from Thanksgiving to Christmas, I realize how much I miss living closer to family.  Growing up our traditions were full of extended family. We always went to my Aunt Trishy's for Thanksgiving and spent a few days with my Dad's side of the family. Christmas Day was spent with Aunt Patti, Uncle Bobby and Mom's side of the family. I have so many memories of my cousins and the fun times we had surrounding these holidays. Times are different for many families and for our family all of our parents and siblings are on the East Coast so make those memories is so much harder.

We were lucky to have my Mom, our beloved Mimi with us for a week in early December. It was so nice to be able to just be. We didn't do anything special, just enjoyed our time together. Mimi got to come to the kids activities and appointments and play endlessly with Maddy. As always our visit was too short.

My Dad, Grandpa, was with us for two weeks including Christmas. Again we just had a quiet visit enjoying our time together. Our visit wasn't as much fun as I had hoped as I had my impacted wisdom teeth extracted the day after he arrived, but we made the best of it and just had a relaxing few weeks.

As these visits came to an end, and we returned to our normal crazy schedule, I was reminded how blessed we are to live in a time when family (no matter how far away) is no more then a phone call or facetime call away. The ability to "see" family on a regular basis makes the distance seem not quite so far.

As we gear up for a GREAT 2017 the kids and I are BUSY! Maddy has therapy three times a week along with kindermusik and cooking once a week. Alex has begun playing violin, taking an acting class ans continues with our homeschool co-op, church youth group, golf lessons, tae kwon do, and Boy Scouts. I am homeschooling Alex, a part of our church Dance Ministry, and sit on the Family Advisory Council of our Children's Hospital. Alex and I also devote quite a bit of time Sharing our story to help Fund raise for Cook Children's Foundation and Children's Miracle Network. We have found we really enjoy sharing and using our story to help others. We have met some incredible people on this journey and are grateful to be able to use our exceptional life in this way.

By now most of you know, but in June our family grew with the addition of a Service Dog for Alex. Zoey has been so much fun and also so much work as she is still a puppy, but we love her to pieces. The bond between her and Alex is incredible and from early on she has been able to alert us when he is not feeling well. We are still working on her training as she just turned a year. She will receive her full training credentials around the age of 2, but she has already made a difference.

Medically we have had a time of stability for which we are so grateful. The kids care is pretty intense and time consuming and leaves me exhausted most days, but I will take it as we went all of 2016 without an inpatient stay or crisis. I was not sure I would ever be able to say that! I am awed daily by the strength, bravery and perseverance my kids display to accomplish a life that is not easy.

 I am excited to get back to updating this blog and hope you are excited to join me on this journey. I will leave you with some pictures from the past few weeks.