A Good Week

Felix 10 weeks

Felix has been doing pretty dang good this week.

All of his test results and the numbers on his monitors have been positive. CMV counts are down, lymphocyte counts are up, his temperature is down, his oxygen saturation is up, his heart rate and breathing are down, etc.

But more importantly, he’s looking and behaving healthier.

His mucousy cough — that he’s had since he was a week old — is completely gone. His breathing is so improved that he’s been taken off of oxygen, which he’s been on since he was admitted at the hospital eight weeks ago. No more prongs in his nose! He’s got more energy to cry and complain, and when he does, his voice is strong and piercing rather than weak and raspy. He’s got energy to kick his arms and legs and even drink from a bottle a little here and there. He loves to be held and to look around. And he’s starting to smile.

The enzyme injections are working. They are helping his body to build up lymphocytes so that he can fight off infection.

We’re becoming cautiously optimistic. If things continue to go well, we might be able to take him home in a month or so. We want to start working on feeding him orally again, and we’re starting occupational therapy to encourage his development (he’s lagging a bit due to chronic hospitalization. All the doctors tell me not to worry.)

When we get good news our doctors dance and chatter and jump around. Ben and I smile quietly and hold hands. I can’t let myself get too excited. We still have a long, scary, risky road ahead of us.

This is not even close to the end of treatment. Enzyme replacement is buying us time. It is typically only effective for a year or two. Ultimately, he still needs to go through gene therapy (which is what we’re gunning for) or a bone marrow transplant as a long-term solution. They’re both risky procedures with uncertain outcomes. And both require him to remain in isolation for at least six months (possibly two years) afterwards as he recovers. And we don’t even have a spot for gene therapy.

But some nights I go to bed and don’t feel sick with worry. That’s something.

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Comments

  1. Happy to hear this good news and keeping the prayers coming for your whole family. <3
    Haley @ Carrots for Michaelmas recently posted..This Week’s Miscellany: Vol. 116My Profile

  2. so happy to hear this positive news. Praying that Felix continues to improve and that you can take him home and be reunited with Lydia soon.

  3. Praise God! Continuing to pray.

  4. Kathleen, life is smiling us again. Blessings and courage! Ps. 40, that’s my favorite. I share it with you all. Greetings from France.

  5. Praying the good news continues! He’s looking bigger and stronger even in this one pic!

  6. Dear, sweet, brave, strong Felix! Huzzah! Praise God, and prayers that the good news continues and your worries can be further stilled.

  7. PepperReed says:

    AHHH! The Blessing of Good News! At least enough to let you catch your breath and hopefully get a restful nights sleep.

  8. I’m happy to hear that though things still are challenging you have gotten a little reprieve and some hope to help you survive. He really looks great! Hang in there, and we’ll all keep praying for you.
    Jennifer @ Little Silly Goose recently posted..Holidays at the new house part 2: Thanksgiving 2014My Profile

  9. Melissa Fulmer says:

    YAY! Still praying! He is so sweet!!!

  10. Emily Williams says:

    Continuing to pray, and feeling thrilled for this bit of good news and hope!

  11. I am so happy things are going better for you and Felix, he is a kind of namesake to me, I feel for him and wish him an eventual recovery and a long and happy life.
    Victor Sudakov recently posted..В Солнечной системе могут быть еще две неизвестные планеты размером с ЗемлюMy Profile

  12. Rejoicing with you in the good news, as I also cry with you in the sorrowful. I have no wise words, and I don’t know what you’re going through, but I am loving and praying anyway. xoxo.
    Beth recently posted..Type-B Personalities & Menu Planning: 5 Keys to SuccessMy Profile

  13. Isn’t that a hard place!? You get good news and you feel slightly suspicious yet also much lighter? Praying for more and more of those sleepfilled nights for you guys <3
    Hannah Corson recently posted..Simple Living Part Four: Homemade Face WashMy Profile

  14. At the very least a much-needed respite for all of you. Enjoy it, use it. He looks wonderful. Praying!

  15. Praise the Lord God Almighty!! Great news! I will continue to pray for you and your family. He is in control. May He keep blessing, guiding and keeping your family under His wings. Felix looks superb :)

  16. I’m so glad Felix is doing better! I hope things continue in this way. I might not comment on every post, but I’m still reading and praying.
    Michele recently posted..S’s Race with the Midwife (His Birth Story)My Profile

  17. HooRAAAAAAAAAAAAAY! Praying for you every night!

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