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Quinault
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« on: February 07, 2013, 08:59:05 PM » |
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This thread has a synopsis of the saga thus far: http://www.orthodoxchristianity.net/forum/index.php/topic,47018.0.htmlTazzy saw a pulmonary specialist today. We ended up with more questions than answers. But the questions are heading us in the right direction. Verdict: Taz certainly has RAD. He hasn't been getting enough medication to manage it. So instead of Pulmicort once a day via neb, he is switched to 2 puffs twice daily of Flovent. The pulmonologist really believes that there is *something* anatomical going on. His breathing sounds just awful when he sleeps no matter what position he sleeps in. So it was really wonderful that Taz decided to fall asleep during our visit so she could hear what he does when he sleeps. He will be having another swallow study in 2 weeks. After that they may scope him under anesthesia to check below the vocal chords for abnormalities. She explained the various things it could be. It was very interesting. But for the sake of brevity I won't go into it in depth. Basically they wouldn't actually *do* anything at this point if they find anything unless they see a reason it must be done ASAP. There are 3 possibilities; 2 are damage from intubation, 1 is congenital. One he could grow out of, one they would watch, and one they couldn't do anything about other than treat all upper airway infections quickly. From her evaluation she had a concern about his heart. When he is sleeping his heart starts beating irregularly and slows down a great deal. We will be meeting a cardiologist to see how much of that is normal, versus a real problem. The pulmonologist was *very* concerned about his weight gain. She wanted him to see a GI. When she found out we were already seen by GI, and they chose not to do anything, she was pretty shocked. She had us meet with a dietician. The dietician has put in orders for him to start on EleCare Jr. This will add about 1500 cals a day to his diet! We should have a chunky monkey soon! I had looked into this earlier, but our insurance wouldn't cover it. Children's is putting him on a program that will pay for it! This is a real blessing since we could not have afforded the 1k cost OOP each month. Thank you to those of you that have been praying for this little guy. Please continue to pray for his medical team to find the right answers to help him to grow and thrive. |
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« Last Edit: February 07, 2013, 08:59:22 PM by Quinault »
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SolEX01
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« Reply #1 on: February 07, 2013, 09:06:37 PM » |
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Lord have mercy.
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dcommini
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Beannachd Dia dhuit
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« Reply #2 on: February 07, 2013, 09:09:29 PM » |
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Lord, have mercy
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Gun cuireadh do chupa thairis le slàinte agus sona - May your cup overflow with health and happiness Check out my blog... |
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Diana
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« Reply #3 on: February 07, 2013, 09:35:53 PM » |
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Lord have mercy on sweet little Taz! Saint Zenaida intercede for him!!
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LizaSymonenko
Христос Воскрес!!! Christ is Risen!!!
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« Reply #4 on: February 07, 2013, 09:56:02 PM » |
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Lord have mercy and grant Taz good health!
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Conquer evil men by your gentle kindness, and make zealous men wonder at your goodness. Put the lover of legality to shame by your compassion. With the afflicted be afflicted in mind. Love all men, but keep distant from all men.
—St. Isaac of Syria
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marigold
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« Reply #5 on: February 07, 2013, 10:10:59 PM » |
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Lord, have mercy on Taz.
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Salpy
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« Reply #6 on: February 08, 2013, 01:41:22 AM » |
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Lord have mercy!
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St. Hripsimeh pray for us!
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Maximum Bob
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« Reply #7 on: February 08, 2013, 01:47:15 AM » |
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Lord have mercy on Tazzy.
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Prov. 3: 5-6 Trust in the Lord with all your heart, lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths.
Psalm 37:23 The Lord guides a man safely in the way he should go.
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Gebre Menfes Kidus
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« Reply #8 on: February 08, 2013, 01:56:14 AM » |
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"Lord have mercy."
Selam
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"Salvation is free, but not easy. It is completely dependent upon the grace of God, and yet we must work it out with fear and trembling. It is given to all, but only a few find it. We are saved only by His Cross, and yet not without taking up our own." +GMK+
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Quinault
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« Reply #9 on: February 21, 2013, 07:05:07 PM » |
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He saw the cardiologist about 2 weeks ago. At that time he had gained over 1 pound on the new formula! He had only been on that formula for about a week, so that was a great weight gain for him. I imagine they are trying to get him to about 18-20 lbs so he is actually "on the charts" again.
The cardiologist noticed the arrhythmia and had Taz on a holter monitor for 24 hours to see what is going on. At that time he said it wasn't a significant concern. But in the 30 seconds on the ekg in the office, they caught a couple of strange heart rhythms. I will know in another week or so if the follow-up visit is a year from now, or sooner. The new asthma meds seem to be working well.
The Taz man is 1 year old today! He had a wonderful birthday, and he seems very, very happy. The last year has been very trying for everyone. Thank you all for your prayers.
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Arachne
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Tending Brigid's flame
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« Reply #10 on: February 21, 2013, 07:10:13 PM » |
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Lord grant Taz many more years, and hopefully less trying ones, too.  |
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The reason why clichés are so satisfying is because the truth never loses its residual force. Blog ~ Bookshelf ~ Jukebox |
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SolEX01
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« Reply #11 on: February 21, 2013, 07:47:09 PM » |
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Happy Birthday Taz!!
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Diana
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« Reply #12 on: February 21, 2013, 08:00:40 PM » |
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Happy Birthday Taz!! God grant you many. many happy years!!!
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Maximum Bob
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« Reply #13 on: February 21, 2013, 08:39:16 PM » |
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Many years to Taz
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Prov. 3: 5-6 Trust in the Lord with all your heart, lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths.
Psalm 37:23 The Lord guides a man safely in the way he should go.
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biro
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Και κλήρονομον δείξον με, ζωής της αιωνίου
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« Reply #14 on: February 21, 2013, 09:22:40 PM » |
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Happy birthday! Many more!
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phthalyl.podomatic.com
the-cornet.blogspot.com
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marigold
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« Reply #15 on: February 21, 2013, 11:24:10 PM » |
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May God bless Taz and his family.
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Quinault
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« Reply #16 on: February 22, 2013, 01:59:22 AM » |
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Here is the Taz-man. Now you can put a face to the name you have prayed for, thank you again for those prayers.
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« Last Edit: February 22, 2013, 02:00:09 AM by Quinault »
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biro
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Και κλήρονομον δείξον με, ζωής της αιωνίου
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« Reply #17 on: February 22, 2013, 04:26:48 AM » |
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Oh no, there goes Tokyo, go go Godzilla!
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phthalyl.podomatic.com
the-cornet.blogspot.com
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LizaSymonenko
Христос Воскрес!!! Christ is Risen!!!
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« Reply #18 on: February 22, 2013, 11:32:27 AM » |
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What a cutie! May God grant him good health! ....and many happy and healthy years!
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Conquer evil men by your gentle kindness, and make zealous men wonder at your goodness. Put the lover of legality to shame by your compassion. With the afflicted be afflicted in mind. Love all men, but keep distant from all men.
—St. Isaac of Syria
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Gebre Menfes Kidus
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« Reply #19 on: February 28, 2013, 12:17:32 AM » |
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"Salvation is free, but not easy. It is completely dependent upon the grace of God, and yet we must work it out with fear and trembling. It is given to all, but only a few find it. We are saved only by His Cross, and yet not without taking up our own." +GMK+
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