We visited the ENT yesterday which went very well. Cora has an upper respiratory infection in her nose. Because of the infection he did not do a scope or anything so he'll do a full exam on her next visit. The infection is from her chronic pharyngonasal regurgitation (aspiration back splashed from the throat and up the nose) which means she's had this infection for quite some time and I had no idea. I feel horrible! But, I'm glad she's been seen and it's getting taken care of. He's hoping the antibiotic that the pediatrician put her on will work and also prescribed some mucinex for her to take for the next 30 days. I'm crossing my fingers this will take care of the upper respiratory problems.
Her appointment with the pulmonologist isn't for another month but she's on the high priority wait list if there are any cancellations. I'm a little too anxious to see this doctor and really hope we get ALL of the answers we're looking for. She also has another appointment with her allergist just in case this is an environmental problem as well.
Until then, we'll pray and cross our fingers.
Friday, September 12, 2014
Sunday, September 7, 2014
Abnormal Lungs
On Friday I called the pediatrician's office to reschedule Cora's 9 month check up because we'll be in Boise at the Cox reunion. I happened to mention her breathing and the nurse told me to take Cora in right away. Luckily, we were eating lunch at the park with friends so it was great timing. They did a chest x-ray on Cora and can't find her lungs it's really weird, they are transparent on the film. The doctor is not sure what would cause this or if/what is wrong. He put her on an antibiotic to be on the safe side and referred me to a couple specialists so they can help pinpoint what's going on. Our next visit is with ENT this week.
I feel a little guilty because I've always known and been concerned with her chronic congestion and cough since birth. She's always had it. It hasn't always been this bad but I just assumed it was aspiration again. It very well could be. Any appointment we go to I always mention and question her breathing but nobody seemed too concerned about it. The past few months I kept feeling that I need to get her in to see a pulmonologist just to be on the safe side. I guess I kept putting off that feeling because nobody else thought it was a big deal. I'm really glad I took her in on Friday, he said I should notice a difference by the end of the week to see if the antibiotics are helping/curing what's wrong. So far Cora's only getting worse. I'm also crossing my fingers that she doesn't become allergic to the antibiotic, any drugs they put her on she's super sensitive to and is allergic. This one is not erythromyocin based because I know for sure she's allergic to that one.
I'm crossing my fingers that ENT and pulmonology can help us figure this out. I don't know if there are other specialists that will be involved or not. I just worry that she's going to stop breathing during one of her coughing fits and it's getting more difficult for her to eat by mouth. I do not want to her develop oral aversion, she's made such good progress with her digestion that this would be absolutely devastating if she did. I don't want to put her back on the pump during the day so if things continue to get considerably worse then I'll bump up these appointments to asap otherwise I'll take her in to the hospital.
I feel a little guilty because I've always known and been concerned with her chronic congestion and cough since birth. She's always had it. It hasn't always been this bad but I just assumed it was aspiration again. It very well could be. Any appointment we go to I always mention and question her breathing but nobody seemed too concerned about it. The past few months I kept feeling that I need to get her in to see a pulmonologist just to be on the safe side. I guess I kept putting off that feeling because nobody else thought it was a big deal. I'm really glad I took her in on Friday, he said I should notice a difference by the end of the week to see if the antibiotics are helping/curing what's wrong. So far Cora's only getting worse. I'm also crossing my fingers that she doesn't become allergic to the antibiotic, any drugs they put her on she's super sensitive to and is allergic. This one is not erythromyocin based because I know for sure she's allergic to that one.
I'm crossing my fingers that ENT and pulmonology can help us figure this out. I don't know if there are other specialists that will be involved or not. I just worry that she's going to stop breathing during one of her coughing fits and it's getting more difficult for her to eat by mouth. I do not want to her develop oral aversion, she's made such good progress with her digestion that this would be absolutely devastating if she did. I don't want to put her back on the pump during the day so if things continue to get considerably worse then I'll bump up these appointments to asap otherwise I'll take her in to the hospital.
Family Resemblence
Mom texted me these picture this morning. Oh to be 7 again with holes in my smile wearing, stretchy stirrup pants and black sued shoes. But, look at how much Kimball looks like little Scotty!
And here I'm 5, I definitely see a lot of Kimball in me in this one.
Oh little Timmy, he's so cute! And me at 8 months....wow, lots of Cora there. I thought she was all Cox.
Wednesday, September 3, 2014
Cora's Update
There are little tidbits about Cora's health that I keep forgetting to blog about. After we got home from our summer visit to TF, she had six various specialist visits. They all went extremely well (minus the neurologist) and they don't need to see her again until March-May of next year. Yay! I've never gone that long without doctor appointments for Cora so it'll be nice to have such a long break.
About two weeks ago she saw the Ophthalmologist again and he was stunned! There was a resident doctor who was there with him and he said, "You should've seen this baby five months ago....1000 times better! Oh my gosh!" He was amazed at how well she looked and was doing. He didn't do an eye exam or anything and I only had one question: she tends to have watery/teary eyes all the time, what does that mean? He said she's got a plugged tear duct or something which is an easy surgery fix and he can do it at the same time as her heart surgery. Win, win!
She STILL has this chronic congestion/cough going on. I called the GI doctor to see if she could get me a referral to a pulmonologist (we had discussed this option if her upper respiratory didn't improve after the surgery). She called me back and said she'd get me another referral to the ENT we saw earlier this year. I don't know what the problem is or what's causing this, she's had it since she was born. My gut feeling is that she's still aspirating. It seems every swallow study we do we find that she's aspirating, try to fix it with thickening her foods, and then a short time later she starts aspirating again. I'm not sure what to do about it all, she doesn't seem to be outgrowing it which was my hope. If anything, it's getting much worse.
I finally started up again introducing solid foods to her. I had to quit about a month ago because of her cough and then again because she had mild HFMD. Last week I introduced a probiotic to her diet which she's been on for a week and seems to be handling it just fine. I don't really see any difference in her digestion at all, maybe it takes more time to work. Today I started her on squash.....crossing my fingers this goes much better than the carrots!
She's had a long break from her physical and speech therapy, today we started back up again and I've been so anxious to get them back! Especially her PT, she does wonders for Cora and I always notice a huge difference, I'm always amazed at Cora's progress at the end of the session.
Overall, she's still doing great and making good progress. I wish her eating and digestion was less complicated, it seems to be the crux of the majority of her problems. But we continue to hope and pray and trust a loving Heavenly Father. I try my best to work with her everyday, she's shows so much motivation and absolutely astounds me.
About two weeks ago she saw the Ophthalmologist again and he was stunned! There was a resident doctor who was there with him and he said, "You should've seen this baby five months ago....1000 times better! Oh my gosh!" He was amazed at how well she looked and was doing. He didn't do an eye exam or anything and I only had one question: she tends to have watery/teary eyes all the time, what does that mean? He said she's got a plugged tear duct or something which is an easy surgery fix and he can do it at the same time as her heart surgery. Win, win!
She STILL has this chronic congestion/cough going on. I called the GI doctor to see if she could get me a referral to a pulmonologist (we had discussed this option if her upper respiratory didn't improve after the surgery). She called me back and said she'd get me another referral to the ENT we saw earlier this year. I don't know what the problem is or what's causing this, she's had it since she was born. My gut feeling is that she's still aspirating. It seems every swallow study we do we find that she's aspirating, try to fix it with thickening her foods, and then a short time later she starts aspirating again. I'm not sure what to do about it all, she doesn't seem to be outgrowing it which was my hope. If anything, it's getting much worse.
I finally started up again introducing solid foods to her. I had to quit about a month ago because of her cough and then again because she had mild HFMD. Last week I introduced a probiotic to her diet which she's been on for a week and seems to be handling it just fine. I don't really see any difference in her digestion at all, maybe it takes more time to work. Today I started her on squash.....crossing my fingers this goes much better than the carrots!
She's had a long break from her physical and speech therapy, today we started back up again and I've been so anxious to get them back! Especially her PT, she does wonders for Cora and I always notice a huge difference, I'm always amazed at Cora's progress at the end of the session.
Overall, she's still doing great and making good progress. I wish her eating and digestion was less complicated, it seems to be the crux of the majority of her problems. But we continue to hope and pray and trust a loving Heavenly Father. I try my best to work with her everyday, she's shows so much motivation and absolutely astounds me.
Tuesday, September 2, 2014
You Owe Me
"And still, after all this time, the Sun have never said to the Earth, "You owe me." Look what happens with love like that. It lights up the sky."
- Hafez
- Hafez
Face The Future With Faith
"It is true. We live to die, and we die to live again. From an eternal perspective, the only death that is truly premature is the death of one who is not prepared to meet God."
- Russell M. Nelson
- Russell M. Nelson
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