A busy two weeks

Wow...I can't believe it is going to be May this week! The time seems to just fly by.

On Palm Sunday, Alex and I had the opportunity to dance at church (he was Jesus at the Temple and I was Mary). We did this dance several years ago and it is always emotional. On the 15th Alex and I wound up at the hospital for a big chunk of the day as we had an appointment with his sleep doctor and then had to visit the infusion center to try and get his port functioning correctly again. It was a long day, but we were able to bring some smiles to the faces of a few patients with Zoey!

Tuesday and Wednesday were relatively slow before a CRAZY day Thursday! Alex and I started our day speaking at the CMNH kickoff for Cook Children's. We are so honored that the Foundation continues to ask us to share our story to try and put a face to the reason it is important to give to CMNH. Alex did great (as usual) and Zoey was amazing in the crowd of 300 plus poeple. We were able to hear Brrian Jackson speak. He has an incredible story of living with Hope. 

Alex and Brrian Jackson

This sweet man asked to pray with us after the event.

Alex and Lori (one of our beloved Foundation girls)

Karol is such an important part of our lives. Her friendship blesses us immensely.

Jenny works for CMNH and we have come to know and love her over the past 4 years.

After leaving our event, I had to rush to school to help with Maddy's Easter party.  I love to volunteer and watch Maddy with her classmates. 

Maddy with two of her best friends

Maddy and Brooke

Easter Egg hunt

When you find out you get Ice Cream Sundaes!

Our day wasn't over yet! We headed off to an arcade after school for an Extra Life Kickoff. Alex loves to see the guys he gets to game and fundraise with.

Alex holding the Extra Life Shield

Best big brother EVER!

Alex and David

Alex and JR

After the craziness of the week we were thankful to have a quiet Easter Weekend. On Friday, we took some Bluebonnet pictures. i don't have them back yet, but I snapped a few pics while we were waiting. 

We had a few more doctors appointments for Alex this week. All is pretty much Status Quo. Zoey continues to be amazing both with her behavior and her alerting. They become more and more inseparable each day. 

We ask that you continue to pray for our family on several fronts. One is we have had a string of extremely expensive home repairs that have left me feeling anxious about finances. Please pray for me to trust that we will be fine and know that I am not in control. Second, Alex has had several periods where he feels like he is getting sick and will need to go to the hospital. During this same time his port has not been functioning correctly again. Pray for him to feel better and for his line to work. 

Thank you for all the love and support you give our family.

Ali

Reunion

This has been a pretty quiet week overall with some big time fun last night!

First let me give you some background...I grew up in NY about 30 minutes outside of NYC. I was in the same school system from Kindergarten all the way through Twelfth grade. Shortly after I graduated and headed South to East Carolina University, my parents moved out of NY. I loved NC and since my parents no longer lived in my hometown I lost touch with most of my childhood friends. When Facebook started one of the really cool things was reconnecting with old friends. While many of us are 'friends" online. I haven't seen any of those friends in very many years.

One of my closest friends from middles school and high school lives in Tulsa, OK and over the past year or two we have talked about trying to get together. Last week, Julie sent me a message letting me know they would be in TX and we made plans to meet up. We jumped right in catching up on the almost 26 years!!!! since we have seen each other. (Yes I am old). We had so much fun and Julie's son and Maddy had a blast! We have promised each other we will do it again soon.

In other news, Zoey continues to do fabulous, both in her behavior when we are out and her alerting of Alex.

Unfortunately both kids are under the weather. Alex started feeling bad last night which unfortunately cut our visit a little shorter then we had hoped. Maddy woke up this morning with a temperature and a nasty cough. Please pray for Mad to feel better and more importantly for Alex to be able to avoid a hospitalization.

Thank you for continuing to support our family.
Ali

Hospital Trip

This past two weeks has not been what we had hoped for. We were gearing up for a trip to Houston to see our Mito specialist and immunologist, but Alex got sick and threw a wrench in the plans. On March 28th, Alex woke up not feeling great. All day he was telling me he thought he might be getting sick. Shortly before 5:00 PM he spiked a fever of 103. We wound up inpatient from Thursday night through Monday. Alex woke up feeling fine on Friday, but the doctors wanted to keep an eye on him/his labs and make sure he was okay. Zoey stayed with us most days, but went home at night. That sweet girl wouldn't leave Alex's room whenever she was home.   Most of this past week was spent recouping and trying to catch up on regular life. For families that don't spend a lot of time in the hospital, it is hard to lose days of your life where you can't do all that you have planned. Coming home you have to recover from the exhaustion, the missed tasks, the financial strain (It is extremely expensive to eat in a hospital). So the next days are spent catching up on rest, tasks and re-budgeting to try and get back to life. I finally feel like I am ready to start this week and not feel quite as frazzled with all I have to do! We did have some positives this week...Zoey did amazing at the hospital and we had a new nurse start that will help us 2 days a week. This morning Zoey went to church with Alex for the first time. She did really well. The Sunday School teachers complimented me on how well she and Alex did. Alex told em the only issue is that Zoey started alerting during a prayer which distracted everyone. OOPS!

This is a very common site in our house

Going for a walk before he got sick

What its like having a 5 yo in the ER!

Feeling Good

Maddy loves when she gets a Prayer Bear

Taking care of her Boy

Alerting

So happy together

On Guard

Protecting her Boy

Maddy walking Zoey out to the car

It is awesome when your best friend joins your ballet class

When your dog gets in your spot, use her as a pillow

My Fashion Diva

Mermaid Tails

Thank you to everyone who prayed for us and continues to pray for us.
Ali