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Author Topic: And update to earlier prayer requests re:Tazzy  (Read 2290 times) Average Rating: 0
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Quinault
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What about frogs? I like frogs!


« on: September 18, 2012, 12:09:47 AM »

The Taz-man saga:
http://www.orthodoxchristianity.net/forum/index.php/topic,43047.0.html
http://www.orthodoxchristianity.net/forum/index.php/topic,43320.0.html
http://www.orthodoxchristianity.net/forum/index.php/topic,43855.0.html
http://www.orthodoxchristianity.net/forum/index.php/topic,44001.0.html
http://www.orthodoxchristianity.net/forum/index.php/topic,45779.0.html

So we have gone around and around trying to figure out what is going on with Taz. He is almost 7 months old and weighs in at a whopping 13 lbs 3 oz. This is concerning to say the least. He has a great deal of trouble breathing. He was scoped to see if he had a constricted airway. That scope came back OK. He had a chest x-ray a couple weeks ago. That showed extensive damage to his lungs consistent with RAD (Reactive Airway Disease). He had some allergy testing that came back inconclusive (which isn't surprising since he is so young). In the doctor's office last week they tested his oxygen levels and he was ranging 85-92 without any medication. So it is rather obvious that the little guy needs some help.

We tried a week of albuterol to see if it helps. There was a HUGE difference in his breathing, and a gained almost 3 oz in 10 days. We are now going down the right track. Now we are fussing with medications to find the proper balance. He is on a long acting medication (pulmicort) via nebulizer once a day, with a rescue inhaler of albuterol as needed. Right now there are a lot of fires in our area. He has been needing the rescue inhaler a great deal lately. I don't know if it is just the fires, or if it is also the medication. He is on the lowest amount of pulmicort possible, he may need to have a higher amount.

He is being tested for cystic fibrosis (sweat test) next month. His newborn screening was negative, this is just a double check really. He will have a barium swallow study sometime soon to see if there is anything else going on. The issue we have is that he *never* really breathed normally since he caught RSV so early. His adjusted age when he caught RSV and was hospitalized was like a couple days old. So we don't know what his "normal" ever was. The assumption is that these tests will come back normal. 99% of me is unconcerned with the tests. There is a part of me that is a little worried that something will be abnormal. But I think that is just maternal worry.

Thank you so much for your prayers, I really appreciate them.

Here is a photo of the Taz-man and his baba:

« Last Edit: September 18, 2012, 12:24:57 AM by Quinault » Logged
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« Reply #1 on: September 18, 2012, 01:19:10 PM »

Lord, have mercy on Taz!
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« Reply #2 on: September 18, 2012, 02:44:16 PM »

LORD HAVE MERCY!
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« Reply #3 on: September 18, 2012, 03:11:42 PM »

 Sad

Lord, have mercy! St. Symeon the God-receiver interceed for us! Through the prayers of the Holy Theotokos, have mercy on Tazzy, o Lord!

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« Reply #4 on: September 18, 2012, 09:25:05 PM »


Lord have mercy!!!
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« Reply #5 on: September 19, 2012, 01:05:20 AM »

Lord have mercy on Taz.
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« Reply #6 on: September 22, 2012, 02:29:19 PM »

The poor little thing was diagnosed with viral meningitis yesterday Sad
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« Reply #7 on: September 22, 2012, 02:40:21 PM »

Lord, have mercy!
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« Reply #8 on: September 22, 2012, 02:45:53 PM »

Lord have mercy.  Sad
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« Reply #9 on: September 22, 2012, 02:48:54 PM »

Oh Lordy, Quinault!  The poor little guy and poor parents. 

Lord have mercy!
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« Reply #10 on: September 22, 2012, 03:35:41 PM »

Lord have mercy.
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« Reply #11 on: October 02, 2012, 10:09:26 AM »


Hope he's doing better!

Lord, have mercy!!!
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« Reply #12 on: October 02, 2012, 12:05:47 PM »

Lord, have mercy.
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« Reply #13 on: October 02, 2012, 01:30:02 PM »

Lord have mercy.
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« Reply #14 on: October 02, 2012, 01:54:31 PM »

Lord have mercy !
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« Reply #15 on: October 07, 2012, 05:09:15 PM »

Kyrie eleison
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« Reply #16 on: October 08, 2012, 06:29:28 PM »

Lord, have mercy.
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« Reply #17 on: October 08, 2012, 06:48:38 PM »

Lord have Mercy.
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« Reply #18 on: October 18, 2012, 04:09:50 AM »

Swallow study showed normal anatomy. Sweat test was Wednesday, I should have the results soon.

His doctor isn't hopeful that we will be able to get him the RSV shot. I wish I could get that little guy a bubble to live in for the next winter!
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« Reply #19 on: October 18, 2012, 09:46:24 PM »

Continued prayers, Lord have mercy.
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« Reply #20 on: October 18, 2012, 09:48:23 PM »

Lord have mercy.

St. Luke, pray for us.
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« Reply #21 on: October 22, 2012, 06:02:01 PM »

Sweat test was negative for cystic fibrosis! Smiley
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« Reply #22 on: October 22, 2012, 06:08:49 PM »

Sweat test was negative for cystic fibrosis! Smiley

Thanks be to God!  angel
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« Reply #23 on: October 22, 2012, 06:12:55 PM »

Great  Smiley
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« Reply #24 on: October 22, 2012, 06:36:14 PM »

Praise God!
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« Reply #25 on: October 22, 2012, 11:28:31 PM »

Glory to God.
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« Reply #26 on: November 03, 2012, 10:34:03 PM »

Taz is sick with a cold again. He has lost weight from the cold, and has a double ear infection. It seems that there may be something metabolic going on that prevents him from absorbing the nutrition from what he eats. He is still breast fed. I have started giving him solids. Normally I just start our kids on table food. His body just can't handle that. I have to give him rice cereal and canned baby food. He has a pretty sensitive stomach, so my diet is fairly limited. I can't eat dairy, soy or egg. I could try going gluten free, but the effects would take awhile to notice in him. He weighs 2.3 oz less today than he did 9-27. He is barely over 13 lbs, he should be closer to 17 lbs (even factoring his 1 month prematurity). I am really wracking my brain to figure out why he isn't gaining. Developmentally he is spot on, to slightly ahead. I think that factors into his lack of weight gain. He is crawling, pulling up, and cruising the furniture. All kids tend to stagnate in weight when they start getting physically active. Most babies have a good amount of baby fat to draw from so it isn't dangerous. Baby fat=brains quite literally. If he doesn't have enough fat stores to draw from it will have direct effects on his development. Please pray that he gains weight, that we figure out why he isn't gaining weight, and that his development won't be effected by this lack of weight gain. Every single ounce of weight gain has been a struggle. We have established good intake, we just can't see his weight gain going up accordingly.
« Last Edit: November 03, 2012, 10:35:20 PM by Quinault » Logged
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« Reply #27 on: November 03, 2012, 10:41:05 PM »

Lord have mercy.  Sad
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« Reply #28 on: November 04, 2012, 11:02:23 AM »

Lord, have mercy.
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« Reply #29 on: November 04, 2012, 01:24:14 PM »

Lord have mercy on Taz!
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« Reply #30 on: December 02, 2012, 09:31:29 PM »

So...an another update to the Taz man saga!

He has officially been labeled "Failure to Thrive" after not gaining any weight over 3 months (not even so much as an oz). I did try going GF for about 2 weeks. When I mentioned that I thought he might be Celiac, they wanted me to feed him gluten so they could do some testing on him. His elimination schedule just never synced up, and he ended up being back on gluten for about 2 weeks and was miserable. He might have gained 1 oz during about a week on gluten. But that is such a small amount that it is worthless. He could have filled a diaper right afterward and lost more than 1 oz, which would have meant he LOST weight on gluten. Testing on anyone under 3 is highly unreliable, so we are going to suspend testing for now. I am meeting with a nutritionist to plot out a calorie dense, GF, Egg-free, Soy-free, Dairy-Free diet. Until I meet with the nutritionist, I am adding olive oil and coconut oil to his meals. I have to get 1215 cals down him. Which doesn't sound like a lot, until you factor in that this means that for every oz of food he needs to be getting at least 100 calories.  I will be taking him in for a weight check in about 2 weeks. Hopefully I can get in to see the nutritionist this week. If I can't, I will just continue to feed  him as many calories as I can. He isn't weaned yet, so he is getting somewhere in the range of 20 calories per oz there. The human milk fortifiers are impossible to get for a 9 month old. So I need to continue to nurse him as often as possible to keep him hydrated, and feed him calorie dense meals.
« Last Edit: December 02, 2012, 09:33:43 PM by Quinault » Logged
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« Reply #31 on: December 02, 2012, 09:50:32 PM »

Oh dear, continued prayers, Lord have mercy.
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« Reply #32 on: December 02, 2012, 11:39:07 PM »

Lord, have mercy.
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« Reply #33 on: December 30, 2012, 06:33:41 PM »

More updates:

He and I have been GF for almost a month. He gained 2 oz in the first 2 weeks GF, and 5 oz in the second 2 weeks GF (which could have been more. He had a 5 oz bottle of milk about 20 minutes before he was weighed, so I had them subtract 5 oz). Unfortunately the GF is having zero effect on his breathing issues. At the moment the little guy has pneumonia. He is on an increased amount of albuterol, and antibiotics. I think we just caught the beginning of it, because he sounds worse today than he did when he was diagnosed Friday. I took him in for a suspected ear infection, I found out his ears were fine but his lungs were not.

My mother has decided now is a great time to try and "reconnect." Her idea of reconnecting is to write a letter telling me that it is my fault that Taz is so sick. Apparently I "invited spirits of witchcraft" into our home by identifying with the indian side of my heritage and giving our kids american indian names. I need to seek "wise spiritual counsel" and cleanse our home of all the demons apparently. I guess I caused him to catch RSV as an infant, and gave him an autoimmune disease by not being a non-denom Pentecostal anymore. This Tuesday will mark 1 year since I last spoke to her.
« Last Edit: December 30, 2012, 06:35:47 PM by Quinault » Logged
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« Reply #34 on: December 30, 2012, 06:37:35 PM »

Oy Sad Lord have mercy!
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« Reply #35 on: December 30, 2012, 08:24:02 PM »

 Cry Lord have mercy.
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« Reply #36 on: December 30, 2012, 09:03:29 PM »

Oh yes, back when Taz was born his placenta was sent to pathology to determine the cause of his placental abruption during labor (he was born *with* the placenta and he was in distress). It wasn't me, the version, or him. It was the midwife's fault. I was induced with something called Cervadil. I was contracting well, and I requested that she remove it, but she refused to remove it. By not removing it she caused my uterus to be hyper-stimulated, which caused the placental abruption. So the abruption was not my fault at all. There was no indication that my blood pressure had any effect whatsoever on his placenta.


I had my first ever epidural during his labor because the hyper-stimulation was so difficult to manage.
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« Reply #37 on: December 30, 2012, 11:15:35 PM »

Lord have mercy.
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« Reply #38 on: December 30, 2012, 11:18:34 PM »

Lord, have mercy on Taz and Quinault!
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« Reply #39 on: December 31, 2012, 08:37:18 AM »

Lord have mercy.
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« Reply #40 on: December 31, 2012, 10:01:12 AM »

Lord have mercy.
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« Reply #41 on: January 01, 2013, 02:07:43 PM »

Lord have mercy. 
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« Reply #42 on: January 01, 2013, 03:57:02 PM »

may God have mercy and give you all peace.
i have a close relative who had so many very serious health problems in infancy, but he is ok now, thank God.
may God give u peace in the area of yr mum, and a nice, safe fire for disposing of the letter.
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« Reply #43 on: January 31, 2013, 04:37:24 AM »

2 months off gluten has been very good for the Taz-man. He has gained almost 1 lb and grown almost an inch in the last 22 days. We had a scare Saturday night, he ended up going via ambulance to the ER for a few hours. Essentially his RAD caused a massive bronchiospasm in reaction to some environmental stuff. All this meds weren't working, and he was showing all the signs/symptoms of severe respiratory distress. The solution is to get an air filter, replace the flooring ASAP, and keep him away from the vacuumed rooms for as long as possible after vacuuming to let the air clear.

Thank you for your prayers. He is doing better. Hopefully the pulmonary specialist can help with medications next Thursday.


In other news; the Taz man will have a baby brother in May or so! Smiley
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« Reply #44 on: January 31, 2013, 04:42:14 AM »

Congrats! Smiley
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