A Day of Firsts

Today was a day full of a lot of firsts.

The Happy Buddy headed off for his first day of PreK-3!

What in the world, people?!

He is growing up so fast.

Today I used mousse in my hair for the first time.

I’ve always been a gel kind of gal, but mousse is so much less crispy!

Click Image for Photo Source

Today the Happy Hubby woke up and decided it was time he fried an egg for the first time.

And today was the first day we didn’t have to worry that the Happy Baby has a muscular dystrophy.

Because he doesn’t. :-)

*Insert Shouts of Praise Here!*

He does, however, have subtle signs of mitochondrial damage (they are calling it mitochondrial myopathy)…

BUT (and that’s a BIG but) –

God has been doing such amazing healing in the Happy Baby’s body (especially since he has been home with us) that even the geneticist was mystified (I am not even kidding when I tell you that once the Happy Baby started rolling over – he also started lifting his head like we’ve never seen before!).

Doctor said he probably won’t be a superstar on the football field, and he will probably have some delays when it comes to milestones like walking and boyyyyyy are we still battling it out with the bottles, but otherwise it’s looking like our little boy is going to be just fiiiiiiine.

He mentioned something about getting the Happy Baby on a drug and also about coming to see him again in January for more tests, but when the Happy Hubs and I left the office, we decided not to schedule the next visit.

Because, quite honestly, we don’t think we are going to need it.

The doctor said he might not be a star athlete, but hasn’t the Happy Baby defied the odds already?

A friend reminded me of this truth recently, “”You, O LORD, keep my lamp burning; my God turns my darkness into light. With Your help I can advance against a troop; with my God I can scale a wall.” Psalm 18:28-29

God has already proven His power in the Happy Baby so far (um, rolling over at 4 months is not even developmentally delayed!) – we are rejoicing in His gracious hand on our son’s life and are believing for a 100% healing (aka giving that feeding tube the boot!).

I am headed to bed now! Β Hopefully to sleep without an anxious heart – a definite FIRST since our journey began 4 months ago.


Love you guys.

“Be at rest once more, O my soul, for the Lord has been good to you.” Psalm 116:7

63 thoughts on “A Day of Firsts

  1. Amazing. I am so thrilled to hear the incredible news. Seriously, how amazing is the Lord?! And your faith is to be admired for not making that next appointment.

  2. Julie praising GOD and crying. I can’t even imagine how well you may sleep tonight..God is so good and I too think the happy baby will be 100% as his body continues to heal.. What wonderful parents you are and so inspiring to others during this time of crisis. Praise God from whom ALL blessings flow…

  3. My tears have fallen today in thankfulness to our great God for His mighty works!! Jet is so very beautiful and loved by so many :-) He is a fighter and he will be just fine! I rejoice with all of you!! Today, we prayed with Aiden & Alyssa and thanked God for healing Jet…a very precious and long-awaited prayer with them. Love, Marla

  4. That is absolutely AWESOME! God is an AMAZING God and never ceases to show HIS mighty hand. Your baby is ADORABLE!!!!! :) God has an incredible plan for his life! :)

  5. So happy to hear about your day of firsts! Jethro is growing and healing with your love and God”s love! Julie you are a blessing to us all! I love you xoxo

  6. What an amazing God we serve! Just to put a smile on your face (hopefully) my healthy, tubby 6 and a half month old isn’t even rolling over yet! Well done Happy Baby and Happy mummy, your faith and openness is such an inspiration! (Not to mention all the activities you come up with!)

  7. So very happy to hear about your joyous news. I have been following your trials and praying for your precious Jet. My parents go to Rio Vista (Richard and Nancy Barnard) and they have been updating me along with this post. I know that our Lord Jesus has your little Jet in His plans to do wonderous things. God is good and He will be showing considerable many things in Jets future. Will continue to pray in regards to feeding tube removal and continued weight gain. In Christ’s Love, Sharon Berger

  8. I believe this is the first I’ve commented on your journey, but I’ve been following your blog since before you announced you were pregnant. I couldn’t help but shout “Praise the Lord!” When I read this blog. God has already done so much through the Happy Baby and I feel He can and will do so much more!

  9. I found your blog, I think through a Pinterest link or something completely out of the blue, and have been reading ever since (and it’s been like 2 months!). I have been thinking about you all day and checking the blog to see what the results were. I’m so happy that you got this wonderful news, I too feel like your little Happy Baby will be fine.

  10. WOOHOO! I was thinking of you today, knowing about your appointment, and what an incredible blessing to hear that news! Congratulations, you guys deserve every happiness!

  11. Thank God that things are going well. They say God does not put more on your shoulders than you can handle! Prayers with you & your family! To look at those pictures today, you would never know that little happy baby has had some terrible struggles. Angels your way to watch over all of you & to give you the needed extra strength to continue your path. Great news today! God Bless!

  12. Oh, I’m sooo happy, I could burst!!! Thanks be to God for His wonderous ways and perfect sovereignty – all the time!!! Will continue praying for you xoxox

  13. What an amazing testimony this Happy Baby {and oh so handsome one at that} is going to have as an adult. I love all the pics you take of him. I chuckled when I read that he turned over at 4 mths. Both my boys turned over at ummmm…..6 mths. LOL! Continually praying for the happy baby and his blessed parents and older bro too!

  14. I am so very excited!! I am rejoicing with tears of joy in my eyes. I am sure the smile will reach all the way into your eyes now. I also know the feeling of how did he get to three so fast. (Don’t blink, He will be going off to college, pray for me as my former 3 year old is now going to college next week) So thankful to have a God who knows our hearts, He is using your family for His Glory, What a great place for you to be, even in your struggle you have been such a great example for so many, getting past your pain and reaching out to others who are hurting. We love you guys.

  15. This is awesome news!!!! Of course we serve an AWESOME God who is good and faithful! Looking forward to seeing Him work daily in this little one’s life!!!

  16. Praise our Great Healer! He is faithful and your faith is so evident! So thrilled for you all!! God has used you to teach us all and to strengthen our faith. God Bless you all, always!

  17. Julie,

    Your journey has been an unbelievable test of Trust and Faith. Not only for a humble trust in the many doctors that have come your way but to truly truly, I say, truly, trusting in our great God no matter the outcome. Isn’t that what life is really all about. It was evident at the end of the day despite all the advise that the doctors gave, that clearly God was and is completely in control. So blessed that you and Ryan stood the test of your Faith, clearly on your knees and taught us all what it means to be a follower of Christ. Life is so not easy and scripture speaks of this often, however, we do not stand alone but have the most precious friend and savior holding us and guiding us at every move, Christ. Besides, the light that comes from the eyes of your precious son, Baby Jet, really says it all, I am truly loved and happy. Love you bunches, Jane

  18. Happy happy day! What wonderful news! My favorite story in the bible is always the story of Job, and how even when his life is turned upside down and everything is taken away, he remains steadfast and doesn’t turn from God, but ever so more TO God, just as you have been doing through all this. Just another reason why we all love you. Thank you for answering so many prayers, Lord!

  19. Congratulations!!!! He is so beautiful and he is going to be 110 just fine! I have been praying all the time for you guys. I am sooooo happy for you. If any one deserves a miracle it is your Happy Family!

  20. Such wonderful news. A happy preschooler, a husband who cooks, and a beautiful baby who’s doing great! Your faith is incredible. Your prayers have been answered. God does amazing things in our lives!

  21. God is great! You and your husband have shown us all such faith, belief, and unconditional love. Your family is an inspiration! God bless you all from MOPS Ft. Lauderdale. Jen White

  22. Tears of joy for you and the Happy Baby! I knew in my heart it would be okay – he looks too healthy and happy for it not to be! and to be rolling over and holding up his head – I would say he is right on target (aside from the feeding tube which I am sure in time will right itself as well). Best wishes to all of you and I will look forward to watching this little guy grow and progress in his own time – love all your pictures. Seeing that little guy’s great smile really makes my days sometimes – what a joy and a blessing not only to you but to God and your church and community. Thank you for sharing your joys and sorrows and trials and tribulations and successes with us – it really helps us keep perspective on our own lives. Thank you and may God bless all of your days.

  23. Julie,
    You are truly amazing (and your hair is less crispy). I am crying tears of joy and amazement at all you have been through and all God has done with you these past 4 months. You are an encouragement to all who know you.
    all our love,

  24. Awesome! Praise the Lord! :-D :-D I’m passing this on to my mom.

    Oh, yes, just to let you know, there’s a new award out, and I’ve nominated you for:

    The Imaginative Youth Blogging Award!

    It just means you are good at helping us be better parents. :-)

  25. OH WOW, We’re SO happy for you! We pray for Baby Jet every day…it will be so much fun to tell the kids of this praise!!! : ) Love, Rebecca

  26. SOOOOO HAPPY to hear this report today (I must admit I butted in on the Happy Hubby’s conversation in the hall today when I overheard him telling the good news:) WOOOHOOO! God is great! Thanks for the update, and we are continuing to keep you all in our prayers.

  27. PRAISE GOD FROM WHOM ALL BLESSINGS FLOW!!!!! So happy to hear this news! You’ve been such an amazing example of “standing firm.”

  28. I am so happy to hear that. I shared that with the staff in my office after I received this post from Laura, and it erupted in cheers. You guys are so loved. Thanks for modeling such an amazingly sweet, tender, and honest faith through this painful season. Your blog has left me teary-eyed a time or two. I much prefer teary-eyed rejoicing! As I’ve said before, your little Jet has been the source of more ministry in a few months than many accomplish in a lifetime.

  29. Oh Julie and Ryan, God is so good…all the time. His perfect peace is a reassurance, a treasure to behold. From the heart, Vickie

  30. Oh my reading that post has left me with tears in my eyes and chills —- I am SO SUPER HAPPY about all your family milestones! It will just keep on getting better and better! xo

  31. Doctors do not know everything :)
    My daughter was sent home with us to die when she was almost 5 months old. We were foster parents and she was the first child ever placed with us. She is almost 9 years old now and the cardiologist is absolutely amazed by her. We do still see several specialists, but more bc insurance requires it to continue to cover her than for any other reason.
    Her cardiologist uses her as an example to his students to be willing to pray for and with your patients and accept miracles as miraculous and not as flukes…..
    I will continue to pray for you!!!

  32. Pingback: Remembering Moses’ Mama (5 Months) « Happy Home Fairy

  33. Pingback: 7 Months – The One Where I’m Grateful « Happy Home Fairy

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