Running the race…

It has been awhile since I last updated….so this blog contains all that we have been doing. I feel that ever since St. Thomas, we got back and have been running ever since. So, I will start there.

SLEEP STUDY-May 13 (see blog entry)
Jayden and I spent the night at the hospital to complete a sleep study. The results revealed he had sleep apnea. We also found out his urine results revealed undectable levels of GAGs. His initial screaning to diagnois MPS showed elevated levels….and now he had none!? God-what are you up to? Is the genisetein working? Is it getting to the brian? We don’t have answers, but we have hope.

STREAKING-May 14 (see blog entry)
We spent the evening with our friends and family (80 to be exact) as we colored our hair purple to raise awareness for Jayden and Brooklyn. What an awesome….bold….thing to do!

The boys from Warren raised over $600 for us and presented us with a check at the Zion Warren game! We split our loyalty that night and wore 1/2 Zion and 1/2 Warren colors. It meant so much that they would present the check in front of our Zion family…and Tyler (Jut’s brother who plays volleyball for Zion) accepted the check with us. I missed the opportunity in front of a captive audience to share about Sanfilippo and really need to seize those opportunities from now on. We did have the chance again on Friday when we attended the Warren banquet. It was a bit hard, watching these senior boys slide show….from babies to seniors….we entered into their experience. It reminded me again…Jayden may never get a senior volleyball slide show, but he did that night. So-what do you focus on? The loss or the gain?

Brooklyn had her ear recheck and we had something to celebrate! Her tubes are working and there are no ear infections! YAY! PRAISE GOD!

That was also the first of our counseling sessions. We took the wise advice of Pastor Joe-and began counseling. It has been fantastic. A tramatic event stirs the pot and things that were settled at the bottom rise to the top. Although I would give our marriage a 7-8 out of 10, we want it to be a 10. So-it has been healing to process and grow closer together because we for sure can’t grow apart. And that would be so easy to do when your focus is consentrated on your children, right?

ME-ME-May 29
My dear sweet Melissa Ness. I had the honor to co-plan her 21st birthday dinner. A few us celebrated this wonerful woman by taking her to the cheesecake factory and putting together a list and basket of 21 life lessons for her. It was a great night of laughter, dancing, and fun. We all came back to my house and got dressed up in garage sale clothes. Thank you Angie-for all your hard work! I love the gold pants—you can be my SYTYCD partner any night!

Melissa-I love you so much!

June 1 marked our follow up meeting with Dr. Burton AND Jaydens Dr appt for his tonsils and adnoids to be removed and tube to be fixed in his left ear (it fell out) with Dr Billings AND our second counseling session. 3 trips on I-94 that day! The meeting went well with Dr. Burton. They are starting a procedure for genistein to get it from DSM for the kids. The company can’t sell it to us anymore because they think it is a liability for the company. The supplement was never tested or manufactured for Sanfilippo….it was for menapausal women. DSM is special, because thy make a special 98% pure synthetic form and then sell it to companies who put a fraction of the pure genistein into a mixture for older women. They don’t give it in such a high dose like us so they got worried. Children’s is working to get it for their patients and have to got through FDA protocol and a bunch of red tape….we have a bit left from our first order….Please pray that we can get this all worked out before we run out if this is the best option for our children. Right now-we feel it is because of their urine test results showing that the body is clearing the GAGs.

Jayden crossed the bridge into another year of preschool! I spent the day at the park with his class as they celebrated their last day. I was so proud of him! I love his smile and the way he treats other kids. He shows compassion to the sad ones, stares at the bad ones, and still loves me to be is best friend. (that is when daddy is not around 🙂 I still get to hold his hand and I just eat that up! Thank you God-for his spirit, his love for others, his kind soul, and for protecting him from this nasty worlds influence. You are so evident, Lord, in his character. I learn so much from him how to treat others. Thank you.

When we returned, we began planning for the garage sale. So many people made it a success. I truly think God preformed a miracle and made the money multiply like he did in the parable that talks about the feeding 5,000. When I deposited the money, I thought we had made $5,600. The bank teller told me different. Usually that is a bad thing. (And let’s just say math was not my strong subject!) We actually made $6,237! Amazing!

MPS-Dave and Busters-June 5
During the garage sale, Brooklyn and I attended the conference sponsored by Children’s Memorial on MPS. It was great being with my girls (Tara and Kelly-other Sanfilippo moms). The conference was good. I relearned everything I think they said at Disney in a more clear, honest, hope-filled way in a fraction if the time. I also met Casey-an 18 year old girl, and her parents. Casey was diagnosed with Sanfilippo at age 15. She appears to be doing well. She is still walking and has a service dog to help her. It was difficult to think, that this happy, smiling baby that I was holding…..very well may loose that smile to Sanfilippo. It made me appreciate the moments even more.

Saturday, after finishing our new fence (YAY! and thank you Ken, Nate, Chad and Tyler), we participated in a walk to support families that have a loved one receiving treatment at the cancer treatment center. It was nict to do something for someone else. I was glad for a moment that it wasn’t me talking up front, or my kids on display, or my family running the event. I was just a participant. Just a normal person for once. However, we all were blazing in purple build with the boyces shirts! Always raising awareness!

Sunday evening, we gathered with a few friends and family to dedicate ourselves to Brooklyn and to God as we committed to “train her up” in the Lord. It was emotional for everyone with us. We shared that our picture for her may look different, and that God is ultimately in control. We rest assured that her salvation is secure, we embrace every moment we have with her as a gift, and if she is anything like Jayden—her character is already a bright shining light of God. That is something I am so thankful for. We hate Sanfilippo-but we can focus on what we loose because of it, or what we a blessed with from it. It is clear that we have MANY blessings….eternal ones that matter, not worldly ones that don’t.

VP3-June 14-16
Jut and I are leading a small group at chruch called VP3. We both took it )me 2 years ago and Jut last year). and it changed who we are. It has been the single most influencial growth point in our walk with Jesus. Good timing, God! It was nice, but hard, to get away for the training, but it was well worth it. The morning getting there was a bit rough….We had both the kids in for sick call, Jayden had pink eye again and a respitory infection, and Brooklyn has a cold. Of course, this caused tension and a rough ride to Indiana. Jut and I fought the entire way. However, I learned a valuable lesson in surrender, and waived the white flag first. The rest of the time was great and well needed.

Mon-Thurs 1/2 day Jayden is in school until July 8. The bus comes at 6:55 AM until 12:55PM. A long day….but, school is important. Any skill he looses is gone….so summer school is mandatory! He is transitioning OK but struggling. He sat on the potty 3 times (3 times more than at home) but didn’t go. I am just glad they are trying! I like the teacher better than last school year so that is good!

TODAY-June 17

Even typing all this makes me tired! I am waiting for Jay to get home, Brooklyn to wake up, laundry to get done, and Jut to get off work so we can leave for Branson MO. Jodelle is paddlesurfing 11 miles across table rock lake to raise awareness and money for the kids. So, 10-12 hour drive, here we come! Please lift her up in prayer for safety, energy….thank God for her and her heart and all the people who helped in any way! visit today!

Can I just tell you that when I finished typing the word “way!” my computer lost power! Thank GOD for the suto save function….or I would have lost this entire blog entry!

Oh, yeah….one other small thing….


One thought on “Running the race…

  1. This was so refreshing for me to read. Of course I teared up a few times, but I can tell by the words you typed you are feeling good. I'm proud of all you are doing and you inspire me along the way. Please remind me of the event your mom is planning so that I can get it on my calendar. I miss you and the fam. I'm so happy to hear about Brooklyn walking. What a simple blessing! Love you, and hugs all around.


Comments are closed.