All thing Texas

What happens when you have your team of coworkers and boss come in for a meeting? You have to show them all things Texas! I have lived in Texas almost as long as I have lived anywhere at this point, but I still chuckle sometimes because Texas is just different. (I lived in NJ for 2 years, NY for 16, NC for 12, and now TX for almost 15)

My co-worker, Jayme, who has become a good friend arrived on Tuesday. Our first order of business was buying cowboy boots and then we headed off to the Stock Show and Rodeo. It was a fun night of hanging out and having fun before our meeting started.

Wednesday we spent the day collecting our coworkers and boss from the airport, grocery shopping, settling in and starting our meeting. On Thursday, we worked hard for most of the day so we could have some sightseeing time later in the day. We headed to the Fort Worth Stockyards to look at some shops and see the Cattle Drive.

We headed back for a little more meeting time and then dinner. After dinner Jayme, Ann and I headed off to Billy Bob's Texas "The World's Largest Honky Tonk" for some line dancing. I was grateful for more freshman year of College when my friends used to take me line dancing on a regular basis. I'm not sure if the dances have gotten harder or I am just old, but it wasn't as easy as I remembered!

Friday we headed to the Dallas Pharmacy to meet the pharmacists and tour the pharmacy before parting ways. We were finally able to get a picture of the whole crew!

ThriveRx Nutrition Advocate Team

I am so lucky to have a job I love for an incredible company. The five of us really enjoyed our 3 days together to team build and strategize to make us better advocates.

While I was gone the kids did really well thanks to our village. There was definitely a point where I wouldn't have been comfortable leaving (even if I was only 15 min away). I am grateful to everyone who pitched in keeping the kids safe and cared for.

I came home a bit under the weather so I have spent most of the weekend trying to recuperate before the week starts. I don't have a fever, but am definitely not feeling 100%. Medically, Alex is doing well with his new TPN formula so we will just watch and see if we need to make any more adjustments. We are still waiting for results on Maddy's testing.

The highlight of the week was a call from Beverly. Beverly has continued to be impressed with Zoey's ability to detect the scent when Alex's cortisol is low. She is also much improved in public settings. Based on what she is seeing, she thinks Zoey should be able to come home to us in about a month!! Please continue to pray for us in this area! Zoey's Fundraiser

Praying this week that I feel better and the kids don't catch whatever I have!
Ali

Not the week we had hoped for!

The week started off really well. We have reinstated Family Fun Day! Those of you who have read my blog for a while know that we used to always doing something fun as a family on Saturday mornings. The year I was pregnant with Maddy, I was on bed rest and we had to stop. We never really got back to it as it is hard with an infant or toddler. Now that Mad is getting older we decided we wanted to go back to this tradition.

So last Saturday we spent the morning at Main Event. It has always been a favorite of Alex's. It was fun for all of us to get out and spend time laughing and playing. And no family fun day is complete without ice cream for lunch!

Deal or No Deal

The boys doing a VR game

Maddy Dancing

Sunday we had a quiet day after church. Maddy enjoyed the pretty weather, blowing bubbles and coloring with sidewalk chalk.

On Monday, Alex started complaining of not feeling well. He had some cold symptoms and a sore throat, but nothing alarming. Tuesday he continued to not feel great. We had a fundraising event at the hospital Tuesday night. The kids enjoyed the evening, especially Maddy who got to see "her bff" Mrs. Mitchell. It is so fun when two different areas of our world collide.

Alex felt pretty puny by the time we got home and woke me up in the middle of the night to let me know he had a fever. We headed off to the ER. Luckily, his flu test was negative and his labs looked pretty good. That coupled with his obvious cold symptoms made everyone comfortable with us continuing to watch him at home. While sorting out Alex, I got a call from our beloved immunologist to let us know that some of Maddy's labs were very concerning. Basically, it appears she is not making a certain kind of white blood cell. Dr. P needed us to repeat the labs immediately so we know if this actually is the case and how to proceed. So After getting Alex settled at home I picked Maddy up from school to head back to the hospital for our third time in less then 18 hours!

Alex seems to be on the mend as the number of tissues he is using is definitely trending down! We will know the results of Maddy's blood work sometime next week. We are trying to use this weekend to regroup and rest up before we start another crazy week.

In Zoey news...Beverly nearly gave me a heart attack yesterday. She called and asked if I was sitting down. Based on a call earlier this week, I thought she was calling to tell me she couldn't work with Zoey and to come pick her up. However, it was quite the opposite. Zoey shocked and impressed Beverly with her attentiveness to the samples we have provided when Alex's cortisol is low. Zoey is responding to the scent and anxious to perform when she smells it. Each positive report puts us closer to our end goal of having Zoey here and alerting to potentially save Alex's life.We continue to raise funds for the training and associated costs. Thank you to everyone who has donated, shared our fundraiser,and especially prayed with us. Zoey's Fundraiser

Praying this next week is less about medical set backs and more about creating memories!

Ali

Medical and Zoey Update

This week was mainly a return to normal, but it felt really busy with lots of medical discussion.

Maddy had a good week with school, ballet, and time with friends. She loves life right now and is full of smiles no matter what we have planned.

Maddy and her best friend, Brooke

Maddy at the dentist

Alex is having some issues with increased stomach pain as well as some apparent problems with his TPN (IV nutrition) so I spent a good chunk of my week speaking to our dietitian, pharmacist, GI and nurse as we tried to come up with a solution on what we should do to make things better. I cannot say that we have come up with a solution but the discussions continue in hopes that we can get Alex feeling better again. It has been a long 2 years of almost constant pain and generally feeling unwell. We are anxious for him to get back to better days.

Both kids also saw hematology this week. Maddy has come such a long way from the days when we saw Dr. Beam on a monthly and sometimes weekly basis, because her blood counts were so concerning. She is doing great and is now seen just once every six months! Alex continues to do well in this area and his counts look much improved after his last blood transfusion and subsequent iron infusion.

Brave girl didn't even cry for blood draw

In other good news, our new insurance that we were so concerned about has been really easy to work with so far and they have been quick to get us approvals when needed. They are even working to try ad allow us to stay with all of the supply companies we know and love. Maddy's Hizentra (immune replacement) that was denied for several months last year was already approved and while she isn't thrilled to go back to being stuck with 4 needles a week, I am relieved to be able to keep her as healthy as possible and keep her from the decline that many mito kids experience with illness.

We had a visit from "our" Erin. Maddy was so excited that this time Erin and Greyson stayed till she got home. She loves babies as much as her mama!

Maddy holding Greyson

My Zoey update...I was thrilled to get a message from Beverly this week letting me know that Zoey has made enough improvement in her confidence that they have resumed scent training. We still have a ways to go, but each step forward means a step closer to home! We continue to raise funds for Zoey's Training and are so grateful to all have who stepped up to help us. Please continue to share our link so we can ensure that Zoey gets the full training she needs.
 Zoey's Fundraiser

Thank you to everyone who has reached out, prayed, and supported us. we are blessed you are in our lives!

Ali