we took paxton to his GI specialist in atlanta yesterday. they're going to schedule another endoscopy & colonoscopy (to be done at the same time so he won't have to be put to sleep twice). :( many of you will remember us telling you how incredibly difficult this test was on paxton last year when he had it done (august 2007). i'm upset that he is having to go through this again, but the doctor did tell us last year that the only way to really monitor changes would be to periodically do these tests. since paxton is still having trouble, he feels it is necessary to take another look. if there are any changes, even subtle changes, he wants to go ahead and start treating Paxton for chrons/colitis. please keep him in your prayers. paxton is a little upset and worried about having to do these tests again, but is being such a trooper about it!! please also continue to pray for his total healing.
the ENT that i saw at emory last week about my ear called today. he told me that he's "not really sure" what to do with my "situation." at first i was a little taken back hearing the chairman of ENT at Emory tell me that he wasn't sure how to handle my "situation." but then it kind of turned to relief. i'd much rather a doctor be honest and say they aren't sure about something than to act like they know what they're doing and experiment on me. it's not only a complicated matter with my ear, but adding all of my neurological "stuff" on top of it causes my case to be a little more difficult.
i had already scheduled an appointment to go to Mayo Clinic in Jacksonville, Florida in November for all of the neurological problems I'm dealing with. I called this afternoon and made them aware of the situation with my ear and they've added ENT to my rotation of visits during my two day stay there. If we're driving all that way, we might as well go ahead and let them see the whole big picture and get their opinion on what's going on!!
still no word from my insurance company regarding the PET scan that my neurologist is wanting to do (to scan for neurosarcoidosis)...I tried calling Friday and no one has returned my call. :/
i'll keep you all posted....thanks so much for your continued prayers!!
i'm blessed indeed!!
9.30.2008
9.23.2008
17. Tuesday, September 23, 2008
i'm completely worn out...physically and mentally.
we took micah to the doctor on sunday after running high fever and coughing all weekend. turns out in addition to some type of upper respiratory infection, he has pink eye...in BOTH eyes. with his four prescriptions a day....he's feeling a lot better, but is still not himself. he's still running a little fever and is still coughing...a LOT!! needless to say, i had to reschedule his eye doctor appointment that was previously scheduled for today. he'll now go on october 15th.
paxton came home from school today with one of his fingers really swollen and turning many different shades of white, blue, purple and black. apparently during recess, he and some friends from his class were playing football....the football was thrown to him and hit him right at the knuckle of his ring finger on his left hand. he said it hurt some...but he still insisted on playing in his soccer game at 6:00pm tonight. soooo, we buddy-taped it and let him play. (his team won 9-1...and he scored one of those goals!!!) after the game we took the tape off and looked at it again...it looked a lot worse. so we ended up in the doctor's office....he fractured it!!! he'll be in a splint for about 4 to 6 weeks. :( by the time we got back home tonight, it was hurting a lot worse. the splint is really uncomfortable...but at least it's his left hand (he's right handed...except for swinging a baseball bat and golf club...which he won't be doing over the next 4 to 6 weeks!).
sometimes it really just seems like too much. but then i'm quickly reminded...while i don't necessarily deserve any of this...i definitely don't deserve any better than this. jesus suffered much worse than all that i'm going through...and He did it for me...He loves me that much! i'm also reminded of Job and the many trials he faced...mine pale in comparison. God is good. He is faithful to those who are faithful to Him. He loves me, Paxton, Micah and Philip...He knows right where we are. He will not leave us nor forsake us...He hasn't forgotten us and He will bring us out of all of this...in His timing.
we took micah to the doctor on sunday after running high fever and coughing all weekend. turns out in addition to some type of upper respiratory infection, he has pink eye...in BOTH eyes. with his four prescriptions a day....he's feeling a lot better, but is still not himself. he's still running a little fever and is still coughing...a LOT!! needless to say, i had to reschedule his eye doctor appointment that was previously scheduled for today. he'll now go on october 15th.
paxton came home from school today with one of his fingers really swollen and turning many different shades of white, blue, purple and black. apparently during recess, he and some friends from his class were playing football....the football was thrown to him and hit him right at the knuckle of his ring finger on his left hand. he said it hurt some...but he still insisted on playing in his soccer game at 6:00pm tonight. soooo, we buddy-taped it and let him play. (his team won 9-1...and he scored one of those goals!!!) after the game we took the tape off and looked at it again...it looked a lot worse. so we ended up in the doctor's office....he fractured it!!! he'll be in a splint for about 4 to 6 weeks. :( by the time we got back home tonight, it was hurting a lot worse. the splint is really uncomfortable...but at least it's his left hand (he's right handed...except for swinging a baseball bat and golf club...which he won't be doing over the next 4 to 6 weeks!).
sometimes it really just seems like too much. but then i'm quickly reminded...while i don't necessarily deserve any of this...i definitely don't deserve any better than this. jesus suffered much worse than all that i'm going through...and He did it for me...He loves me that much! i'm also reminded of Job and the many trials he faced...mine pale in comparison. God is good. He is faithful to those who are faithful to Him. He loves me, Paxton, Micah and Philip...He knows right where we are. He will not leave us nor forsake us...He hasn't forgotten us and He will bring us out of all of this...in His timing.
9.19.2008
16. Friday, September 19, 2008.....edited 9/20/08
....i'm exhausted....this has been a long, eventful week.
on tuesday afternoon, philip and i traveled up to emory in atlanta. it was a pretty "simple" visit...didn't have to see any doctors...i just had to have an MRI. it wasn't fun, but was not a big deal either.
on wednesday morning, we traveled back up to emory to see the chairman of the ENT department about my ear.
here is what we know so far:
- i have an aneurysm in my jugular vein and it has worn down the bone in my right ear.
- i have an abonormally large sinus cavity outside my right ear.
the doctor mentioned surgery, but wants to wait until he has some CT scans from a different angle....all he had was a view through the top of my head...he wants to see the jugular vein and my ear from a side view of my neck. he says the surgery is extremely risky...they would go in through my head (just above my right ear) and clip the aneurysm, shave out the sinus cavity to make it smaller and try to build up the bone in my ear to make it thicker. there may be more involved depending on what the other CT scans show. either way, he kept stressing the severe risks involved in this surgery. philip and i will really need a lot of guidance and wisdom to make the right choice.
my hearing loss was great enough that he is recommending i get a mini hearing aid for my right ear. unfortunately, these cost anywhere from $1500 - $3000 and insurance won't cover a penny of it!!
i'm supposed to call my doctor at the end of next week after he's had time to review my other CT's and see where we're going from here.
** all of this is completely unrelated to the neurological problems i'm having (the pseudo tumor cerebri) ** on that note...we're STILL waiting on the insurance to approve the PET scan that my neurologist is wanting to do. :/
also...paxton's asthma has been a lot worse this fall. his asthma specialist just changed his inhalers, so hopefully he'll get better results. he is also struggling a lot with stomach pain (last year they told us he was possibly in the early stages of chron's). he has to go back to atlanta next monday (september 29th) to see his specialist there. he's very worried that by telling the doctor he's hurting a lot, they'll put him through the painful, invasive tests that they put him through a year ago. :( please keep him in your prayers!!
and...micah is going to the eye doctor this tuesday (september 23rd...which is also mine and philip's 13 year anniversary!!). his right eye seems to cross in at times and he complains often of his eye hurting. his asthma has also flared up a little more this fall as well. he's using the nebulizer (or as he calls it, "breathing machine") each day. right now i think he may actually be coming down with something....his eyes were really red tonight and he kept complaining about his throat hurting. :( please keep my little micah in your prayers as well!!
thanks so much for your continual prayers and encouragement!! i'm so blessed to have you all in my life! i love you all!
on tuesday afternoon, philip and i traveled up to emory in atlanta. it was a pretty "simple" visit...didn't have to see any doctors...i just had to have an MRI. it wasn't fun, but was not a big deal either.
on wednesday morning, we traveled back up to emory to see the chairman of the ENT department about my ear.
here is what we know so far:
- i have an aneurysm in my jugular vein and it has worn down the bone in my right ear.
- i have an abonormally large sinus cavity outside my right ear.
the doctor mentioned surgery, but wants to wait until he has some CT scans from a different angle....all he had was a view through the top of my head...he wants to see the jugular vein and my ear from a side view of my neck. he says the surgery is extremely risky...they would go in through my head (just above my right ear) and clip the aneurysm, shave out the sinus cavity to make it smaller and try to build up the bone in my ear to make it thicker. there may be more involved depending on what the other CT scans show. either way, he kept stressing the severe risks involved in this surgery. philip and i will really need a lot of guidance and wisdom to make the right choice.
my hearing loss was great enough that he is recommending i get a mini hearing aid for my right ear. unfortunately, these cost anywhere from $1500 - $3000 and insurance won't cover a penny of it!!
i'm supposed to call my doctor at the end of next week after he's had time to review my other CT's and see where we're going from here.
** all of this is completely unrelated to the neurological problems i'm having (the pseudo tumor cerebri) ** on that note...we're STILL waiting on the insurance to approve the PET scan that my neurologist is wanting to do. :/
also...paxton's asthma has been a lot worse this fall. his asthma specialist just changed his inhalers, so hopefully he'll get better results. he is also struggling a lot with stomach pain (last year they told us he was possibly in the early stages of chron's). he has to go back to atlanta next monday (september 29th) to see his specialist there. he's very worried that by telling the doctor he's hurting a lot, they'll put him through the painful, invasive tests that they put him through a year ago. :( please keep him in your prayers!!
and...micah is going to the eye doctor this tuesday (september 23rd...which is also mine and philip's 13 year anniversary!!). his right eye seems to cross in at times and he complains often of his eye hurting. his asthma has also flared up a little more this fall as well. he's using the nebulizer (or as he calls it, "breathing machine") each day. right now i think he may actually be coming down with something....his eyes were really red tonight and he kept complaining about his throat hurting. :( please keep my little micah in your prayers as well!!
thanks so much for your continual prayers and encouragement!! i'm so blessed to have you all in my life! i love you all!
9.04.2008
15. Thursday, September 4, 2008
i went to emory today to see my neuro-opthamalogist and my neurologist.
* my eyes are stable - PRAISE THE LORD!!! my doc said everything was pretty much the same since she saw me last (july 2007)....no changes....yay!!!
* my neurologist is doubling my diamox dosage (diamox is the medicine i take for the pseudo tumor cerebri...it makes me feel really bad, and causes my hands and feet to hurt a lot!). i'm not very excited about this, but it seems to be necessary, so i'll do it...and i'll cling to the fact that god is giving me supernatural strength to face each day....and each day that passes means i'm one day closer to the day he will heal my body completely. :) hallelujah!!!
* concerning the possible neurosarcoidosis...my neurologist received the letter from the insurance company today saying they need some more information from him before they will approve the PET scan he wants to do. he'll send in what they asked for and wait for a response.
* my doctor also needs me to have my potassium levels checked (because of the medication i'm on) and may need to start prescribing potassium supplements.
* i'm going back to emory on tuesday, september 16th for another MRI :/
* then i'll go back to emory on wednesday, september 17th to see an ENT that my neurologist referred me to about the situation with my ear (my jugular vein is going through my middle ear...causing LOTS of pain and hearing loss)
* these two new appointments are in addition to the many other appointments the boys and I have that i mentioned in the post from august 26th. philip and i are both feeling pretty overwhelmed right now with medical stuff!! i really appreciate your prayers.
i received a really sweet card today from someone in our church. it touched me and blessed me far more than she'll ever know. she said i was an inspiration to her. i have to say...i've never, ever in a million years thought i could be an inspiration to anyone else. please know, it is not by my own strength that i get up each day...it is the strength God gives me (new every morning) that enables me to do all that i'm doing. it is the joy of the Lord that enables me to keep a smile on my face. it is remembering who He is and all that He has done for me that enables me to praise Him so freely. i'm so thankful to God!! He's richly blessed me in so many ways...and i've never deserved any of it!!
i can't say this enough: thank you all for your prayers, your hugs, and the sweet words of encouragement that you are pouring out over me. i'm so blessed to have each of you in my life!!! i love you all and will continue to keep you posted!
god bless!
* my eyes are stable - PRAISE THE LORD!!! my doc said everything was pretty much the same since she saw me last (july 2007)....no changes....yay!!!
* my neurologist is doubling my diamox dosage (diamox is the medicine i take for the pseudo tumor cerebri...it makes me feel really bad, and causes my hands and feet to hurt a lot!). i'm not very excited about this, but it seems to be necessary, so i'll do it...and i'll cling to the fact that god is giving me supernatural strength to face each day....and each day that passes means i'm one day closer to the day he will heal my body completely. :) hallelujah!!!
* concerning the possible neurosarcoidosis...my neurologist received the letter from the insurance company today saying they need some more information from him before they will approve the PET scan he wants to do. he'll send in what they asked for and wait for a response.
* my doctor also needs me to have my potassium levels checked (because of the medication i'm on) and may need to start prescribing potassium supplements.
* i'm going back to emory on tuesday, september 16th for another MRI :/
* then i'll go back to emory on wednesday, september 17th to see an ENT that my neurologist referred me to about the situation with my ear (my jugular vein is going through my middle ear...causing LOTS of pain and hearing loss)
* these two new appointments are in addition to the many other appointments the boys and I have that i mentioned in the post from august 26th. philip and i are both feeling pretty overwhelmed right now with medical stuff!! i really appreciate your prayers.
i received a really sweet card today from someone in our church. it touched me and blessed me far more than she'll ever know. she said i was an inspiration to her. i have to say...i've never, ever in a million years thought i could be an inspiration to anyone else. please know, it is not by my own strength that i get up each day...it is the strength God gives me (new every morning) that enables me to do all that i'm doing. it is the joy of the Lord that enables me to keep a smile on my face. it is remembering who He is and all that He has done for me that enables me to praise Him so freely. i'm so thankful to God!! He's richly blessed me in so many ways...and i've never deserved any of it!!
i can't say this enough: thank you all for your prayers, your hugs, and the sweet words of encouragement that you are pouring out over me. i'm so blessed to have each of you in my life!!! i love you all and will continue to keep you posted!
god bless!
9.01.2008
14. Monday, September 1, 2008
it's monday....it's raining...praise the lord...i get to spend the day with my boys...that makes me very happy!! :)
i'm feeling ok so far today. yesterday was a pretty good day. we had GREAT services at church yesterday. i'm so thankful for my church family...the love and support and prayers they offer up for me are almost overwhelming! i feel so loved.
i'm still in a lot of pain every day...mostly my head, my neck, my hands and my feet. Yesterday morning while on the platform, my entire left leg felt like it was asleep...it was hurting so bad, yet at the same time felt like it was completely numb...it was a strange feeling.
with that being said...i'm actually feeling somewhat better! :) the medicine that i was on had really bad cognitive (mind) effects. my neurologist referred to it as "the stupid drug." it really affected my short term memory and my overall thought process....it truly did make me feel stupid (yes...even more stupid than normal!!). i really didn't like the way it made me feel. the medicine he switched me too (diamox) has basically the same painful, physical side effects, but doesn't affect me cognitively the way the other one did. hallelujah!!! :)
i go back to emory on thursday...i'll keep you guys posted!!
thanks for you prayers! god bless you all!
and happy labor day! :)
i'm feeling ok so far today. yesterday was a pretty good day. we had GREAT services at church yesterday. i'm so thankful for my church family...the love and support and prayers they offer up for me are almost overwhelming! i feel so loved.
i'm still in a lot of pain every day...mostly my head, my neck, my hands and my feet. Yesterday morning while on the platform, my entire left leg felt like it was asleep...it was hurting so bad, yet at the same time felt like it was completely numb...it was a strange feeling.
with that being said...i'm actually feeling somewhat better! :) the medicine that i was on had really bad cognitive (mind) effects. my neurologist referred to it as "the stupid drug." it really affected my short term memory and my overall thought process....it truly did make me feel stupid (yes...even more stupid than normal!!). i really didn't like the way it made me feel. the medicine he switched me too (diamox) has basically the same painful, physical side effects, but doesn't affect me cognitively the way the other one did. hallelujah!!! :)
i go back to emory on thursday...i'll keep you guys posted!!
thanks for you prayers! god bless you all!
and happy labor day! :)
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