An Excellent Couple of Weeks

Felix almost five months

Hi friends. Sorry I haven’t been updating you much on Felix lately. The thing is, things have been really uneventful lately . . . in the best possible way.

For the first four months or so, we were going from crisis to crisis. We were constantly getting bad news, and Felix was constantly manifesting some scary and confusing new symptom. But in the last few weeks, things have finally settled down. He hasn’t vomited, had seizures, or spiked a temperature in weeks. He’s taking more and more of his food orally, too — he consistently drinks about half of his total volume. That’s a dramatic improvement, considering just a month ago we were struggling to get him to drink anything at all, and rejoiced if he drank a quarter.

His blood tests have all been really great, too. His CMV counts (i.e. the virus in his blood that we feared would take his life a few months ago) is down to a tenth of what it was a month ago. (It started out around 8 million when we first discovered it; hovered around a million for a few months; and is now down to about a hundred thousand.) And the reason? His T-cell counts (i.e. the antigen-fighting cells his body can’t make without enzyme therapy) have skyrocketed — from .22 to .7 in a matter of weeks. Thanks to his bi-weely injections, he’s building an immune system, and it’s fighting the virus!

Felix’s development is coming along nicely, too. (He’s almost five months old.) I suspect he’s still behind, though no one has told me officially and I’ve avoided looking it up. (It’s just not something I want to add to my worry list.) Whereas a few weeks ago he almost never smiled, he’s getting to be a real charmer now, grinning when we walk into the room, and even occasionally laughing if we tickle him and he’s in the right mood. He coos often and beautifully. He’s starting to grab onto toys and put them in his mouth.

His weight gain has been steady and great, too. He now weighs over 17 lbs!

His doctors are over the moon about his recent lab results, and we’re getting serious about going home. It’s mostly a matter of getting everything organized now: arranging to have a visiting nurse come to our home; getting the appropriate equipment and supplies rented/set up; figuring out the medicine portion, now that his needs have changed; etc. We’re talking about a little more than a week from now. (EEK!)

Ben and I are learning to insert his NG tube ourselves, which is positively dreadful. I’m serious, it’s one one of the most horrible things I’ve ever had to do — Felix screams and gags and flails, and we just keep shoving that tube down his nose without mercy until the job is done. It often ends up coming out his mouth, which means we have to pull it out and start all over again, sometimes up to five times in a row. As an enormously sensitive attachment mom, this makes my heart throb. Next, they want me to learn how to give him his injections. At least it can’t be any worse than the NG tube.

Felix continues to be a very happy boy. He forgives us quickly when we have to do something mean. He loves cuddles but is happy to lay on his back and watch his miraculous hands and talk to himself, too. He is an absolutely joy.

Thank you SO MUCH for your continued prayers and support. We are anxious to get home and start the next chapter of our lives.

 

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Comments

  1. Hooray, hooray! SO happy to read this.

  2. Maria Unger says:

    It is with such joy that I read your update today Kathy. Thank you for sharing good news too. It gives us something to rejoice with you about – it’s the small things that make up our days. Moment by moment…

  3. This makes my heart sing. Praise the Lord, Felix is doing so well. He weighs more than Abigail! Such a strong boy! Lots of love coming from this household

  4. This makes me so so happy!

  5. Yay! This is all such good news. And this streak of very good health makes him a stronger candidate for the treatment you hope for, yes?
    Haley @ Carrots for Michaelmas recently posted..When Your House Is On the Market…And Full of Small ChildrenMy Profile

  6. So happy to hear this news! You continue to be in my thoughts and prayers.
    Laura @ Mothering Spirit recently posted..the empty due dateMy Profile

  7. My heart would be so sad about the NG tube too. Big hugs for that. But I’m so, so happy for the impending home-going! Hurray!! <3<3<3

  8. Hallelujah! That is such great news! Praying things will continue to improve, that the transition home goes smoothly, and that everything continues to progress so he can do the experimental treatment.

    The NG tube sounds terrible. :-( Hugs.

  9. Elyse B. says:

    So happy to hear this joyous news!!! Thank you for keeping us posted so we can continue to keep you in our prayers.

    Happy Easter!

  10. He is ADORABLE!!! Be strong mama!! We understand your struggles and will continue praying for you and your family!

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  1. […] Felix, Fulton, my husband, my marriage, my girls, Gerald, Jenny, Mary, my daughter’s godparents, my godson on his birthday. For good health. For the graces to be a better wife & mother. For clarity and humility. […]

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