The Lord is at hand!

by | Aug 14, 2014 | Blog Posts | 7 comments

The last 2 days have been spent with regular appointments with Noah’s specialists in Rochester.  He had a sleep study overnight to check up on his oxygen requirement.  Noah hated it.  They wrote all over his head, and superglued and taped 31 leads to his head and a few on his body, Then they expect a baby to sleep by himself in a crib.  There was little sleep going on last night.  Taking the leads off was torture!  The tech told me to turn away because the fumes from the acetone is not good to breathe (apparently ok for my baby?!) Then I asked him to take a break from the stinky stuff.
Half hour of the “A” team stabbing my baby produced no blood.  Noah screamed himself to sleep, he has bruises all over his arms, and both left teary.  We came back after appointments, and they got blood the first try without tears!
Saw a new doctor in Hem/Onc, because Noah’s doctor was not available.  We chatted about his previous numbers, but mostly about his little spasms.  He wanted Neurology to see him sooner and said he would email the doctor about him.  On the way home, he called with lab results.  This is the BEST news!  His blasts were down from 36% to 6%!!!
He said it looked like Noah was heading toward remission!!!  Remission!!!
Another count was down, however, and he said if Noah got even a low fever he should immediately be seen.  Pray he stays healthy!
The pulmonologist reported that his desaturations had improved a little, but not enough to get rid of oxygen.  She asked about the little “events” and after I described them at length, she called the neurologist and got him in for an EEG in the afternoon and an appointment tomorrow!  The Neurologist agreed he should not wait 2 weeks.  Tears.  Relieved!!  I have been uncomfortable turning my back on him for any amount of time.
He had an “event” right there in the waiting room before the EEG, and I was able to record the last 5 seconds of it!  Unfortunately he didn’t perform for the EEG, but now I have proof for the appointment tomorrow!!  So thankful!  The EEG was much easier than the sleep study.  He wore a cute little cap full of suction cups and leads built in.  Afterward he looked like he had been playing with an octopus.  I wish I had taken a picture!     

Meanwhile, we chose these 2 days to have the boys join us.  It was eventful.  We did get to go swimming at a hotel, eat fast food, and Daddy took them to Bounce World today.  Vacation!  Super Dad patiently took many trips to the potty, spent hours in the cold pool, and handled a multi child tantrum a long way from the car..  To their credit, what was scheduled to be finished by 10:30, finished at 4pm.  Tomorrow we will be taking only Noah.

4 Rejoice in the Lord always; again I will say, rejoice. 5 Let your reasonableness be known to everyone. The Lord is at hand; 6 do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.7 And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

Lots of rejoicing and requests, but knowing God is at hand gives peace.

Keep praying!  God listens!

7 Comments

  1. Melaine Caffey Zeigler
    Melaine Caffey Zeigler on August 15, 2014 at 2:35 pm

    Oh Courtney. My prayers are with you for more good news and praises for some wonderful news already.
    Have the doctors checked into reflux? Stad was a bit of a premie and never presented as a typical reflux baby. He had these “events” that looked like tiny seizures but turned out, after many EEGs, to be reflux. They occurred shortly after nursing and he was actually
    re-swallowing instead of choking or spitting or throwing up. It was a strange presentation. The test that proved to be GI instead of nuerology was an inverted motorized table with a feeding tube through the nose. Always worth asking different questions even of the Best experts. God is at hand and you all are held by his might hand.

  2. CFisher
    CFisher on August 15, 2014 at 3:33 pm

    Praise God that Noah’s blasts were down. Praying that you will find out what is going on, and that he will get some help. Sweet baby, Noah! Love you guys and we are praying for wisdom, strength and comfort.

  3. Joeleen
    Joeleen on August 15, 2014 at 4:38 pm

    Praying. I was going to leave you a verse God left on my heart, then looked up to see that it was what you ended this post with. Phillipians 4:4-7

  4. Linda Marie Holman
    Linda Marie Holman on August 15, 2014 at 4:45 pm

    You are all in my thoughts and prayers, thankyou for taking the time to share with us all. God bless you

  5. carols
    carols on August 15, 2014 at 8:12 pm

    I wept in sadness as I read the first two paragraphs. Our little Noah in such pain and distress. Heartbreaking. Then I wept for joy as I read about his blood test results. If I have such a rollercoaster of emotions from afar, I can only imagine what it does to you and Dave. Wow.
    Love you,
    Carol

  7. Linda Johnson
    Linda Johnson on August 17, 2014 at 3:37 am

    When God chose you and your family for Noah, he knew Noah was in wonderful hands. You are doing everything humanly possible and wisely trusting the Lord with the rest. God Bless you!!!

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