But from everlasting to everlasting the LORD's love is with those who fear him and his righteousness with their children's children . . . Psalm 103:17

Wednesday, February 20, 2013

Pulmonology appointment

Hi all,

I incorrectly said we had a gastroenterology appointment today; it was pulmonology instead. The report was fine; not great (keeping the meds and oxygen level the same), but definitely WAY better than we ever thought humanly possible at this point!

Seth's lungs sound clear but still "stiff" with scar tissue, and as a result he still tends to breathe faster and shallower rather than slowly and deeply. He "head bobs" visibly when he's worked up about something - exciting or upsetting. But the specialist did comment on how healthy he looks, just as pretty much everyone has since the beginning. He said to give it a year or so and he'll be fine, so that was encouraging. He said even his patients who are still on the ventilator at Seth's age are running around and fine by 18 months to 2 years of age, so we're grateful for Seth's already vent-free life and the hope of returning to PNG before too terribly long! Thanks to so many of you who have prayed us through this; thanks for continuing to do so.

Another huge continued need for prayer is his needing to learn to eat by mouth and not gag and vomit; also that his reflux will continue to improve. He's been tolerating the breast milk way better than he had previously in the hospital, so I am very encouraged! He's not at all able to take anything by bottle anymore, though, so that's a huge regression. The therapist is coming to work with him starting Thursday. She warns us she won't be his favorite person, but also said he'll do just fine. We sure hope and pray so!

Love to you all, with overwhelming gratitude for Seth's life and happiness,


  1. I've been following along with your blog for a few months now. I am truly amazed at how God blesses us. Yes, babies are blessings from God. Anyone who tries to say otherwise, well they just don't know what love their missing. I did not have 5 babies at once but I did have 2 each individually. My son now is 22. He was born 8 weeks premature and therefore the lungs were young and so was his ability to suck. They called him a 10 cc baby. Thats all he would take from a bottle in 30 minutes. He would get exhausted. The rest was by ng tube. Just a little something to ask your physician about or you could have already tried it. They gave me the tiniest binki (pacifier) and had me introduce it to him slowly. It first made him gag.... then he would spit it out (lost a lot of them that way) ... finally we had the day he latched on. :) Oh what a day that was. Everyone was hooping and holloring. It was a step closer to him coming home. Just food for thought. I'm sure you get lots. :) May God continue to bless you as He has and continue your ministry when He knows its time. Isaac is quite a Big Brother. Its not an easy job. Let him know I sad, Great Job.

  2. Praise God for Seth's progress and for such a positive prognosis! I'll continue to pray as you help him through each hurdle ahead - for progress and patience and a happy baby through the challenges.

  3. Hey - at least you made it to the right doc!! Not always easy with so many appts to keep! So very happy for Seth's continued progress, as well as David's, Will's, Marcie's and Grace's - GOD IS SO VERY GOOD!

    Thank You, Lord, for Seth's good progress. Please help him to develop in all the ways he needs to so that he keeps on progressing and soon catches up with the others. It will be such a day of praise when at last he is eating as he should and no longer needs the tube feedings - we look forward to that day, Lord. We praise You now for all the blessings and mercies and give You all the honor and glory. Amen. NKL

  4. So happy to hear Seth is doing so well. He really is doing amazingly well. I know the progress must seem slow at times, but he coming along nicely. My nephew has Downs and when the PT would come he would start to cry at the sight of her. That went on for a couple of months. She did him more good than any of us ever could have done. She was amazing. In a couple of months, he loved her as much as we all did. Shw was one of the best things to ever happen to him. Your whole family is such a blessing. Once again, than you so much for sharing our journey. Prayers continuing...

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  6. What did the doctor say the head bobbing means? Do you mean he bobs up and down? or side to side/front to back? Is it due to lack of neck muscles? Is it related to his lungs?
    My 3 month old son does similar things and I've wondered if they are "normal" for a while now, because he is otherwise a perfectly healthy, full term baby.


Gavin, Carrie, Isaac, Will, David, Marcie, Seth, & Grace Jones

Gavin, Carrie, Isaac, Will, David, Marcie, Seth, & Grace Jones