Mila turned 3!
Mila is doing great! She is still tiny in size and delayed in development but all the major health concerns are a non-issue. The biggest news to report is the Chiari 1 Malformation (that would require brain surgery) has been observed as no change which means we can delay surgery for another 6 months to a year. The main things we are watching are her breathing (starting with her Tracheal stenosis, self diagnosed) and her heart (aortic stenosis). These are common complications that would require intervention for confirmation. This, given the fibrosis common to Myhre, we are avoiding. All in all, Mila is a joy! She has an upbeat personality that loves inclusion and crazes for personal attention. That is great for Michelle and I except when she only wants mommy (because that makes her daddy sad). Her brothers and sister love having her around (most of the time). She loves to dance! She is always found at your feet and always reaching. Her vocabulary is exploding and she is smarter than we give her credit for. If she is outside she is happy. If she gets upset you can easily distract her with our own version of "eye spy." She is strong willed and particular which is easier now that she is better with communicating her wishes. It is safe to say her dynamic character fits perfectly in a loud house of 6.Michelle and I have been focusing on finding joy in the moments, not letting the broader diagnosis, overshadow the joy in moments we experience in our home. We use this mentality to spark the resilience in the other three. They are growing up fast. Personally, I had a season of doubt that culminated with my coming to grips with Mila's (and frankly my own) mortality. What I remind myself of is that God is on the throne and he is good. His plan can be trusted and whatever His will may be is more beautiful for the world than my desire for our own. She (her life) will be someones salvation and that is Glorifying. As I began to verbalize that I am happy for one day as Mila's father I began to appreciate everyday in her presence. Not to steal scripture but... 1 day with Mila is better than a 1000 without. So in this season of materialistic tendencies I am happy to be in a spiritual place of hope for Mila, our family and the Glory of God being revealed through her story. She has and will make us understand, through the Gospels, God's bigger plan of Glory for our community and abroad. For all this, we will give thanks!1 Thessalonians 5:18,in everything give thanks; for this is God’s will for you in Christ Jesus
An update on the Foundation:It is fitting that our angel turned 3 today, on giving Tuesday. If you are looking for a place to give, the Myhre Syndrome Foundation (www.myhresyndrome.org) is making amazing progress.- We are finalizing a decision regarding a registry and will enter an agreement by the end of the year.- The Professional Advisory Board (clinician and researchers tied to the Foundation) is making progress toward diagnosis and treatments to share with the international community, through MSF.- A benefactor of our fundraising has successfully started a mouse model, which is a beginning stage of research to formulate a cure.- We are meeting with Family Office Organizations admins, Senators and Organizations willing to support our cause.There are a few ways you can help...1) When you shop through amazon moving forward use "amazonsmiles.com" and assign Myhre Syndrome Foundation as the recipient. No additional cost to you and same shopping options2) Donate through Facebook https://www.facebook.com/donate/531080674412683/ - And please follow and/or like us on social media3) sign up for monthly giving at www.myhresyndrome.orgWe love ya'll and pray that you enjoy this season and remember that the most precious gift, we do not deserve, is Jesus.
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