Our last ophthalmology appointment was eventful, for numerous reason.
Our car broke down and that was quite an experience for SP and myself.
The good news is that the disease is quiet in her eye, the inflammation gone!
Sadly her vision is not improved as posterior capsule opacification (PCO) occured because lens epithelial cells remaining after cataract surgery have grown on the capsule. You might remember that SP had a PCO laser procedure along with eye muscle surgery in August, for whatever reason, the flare-up, etc.. it wasn't enough and now the Dr must go in surgically and cut out a potion of the posterior capsule to clear up SP's vision. Currently her vision is 20/200. We remain hopeful that this will give SP back her vision in that eye.
But when is enough enough? It might very well get to that point at some time, when comfort care is suggested to keep SP as pain-free as possible but realize that her vision in that eye is lost and just accept that. I'm relieved the Dr does not feel we are at that point yet. I'll freely admit that was a painful conversation to have and I had to work hard not to cry.
So eye surgery #4 (5th eye procedure) is happening December 3rd. Please continue to keep our sweet SP in your thoughts and prayers. In typical and amazing SP fashion she's more upset about the eye patching than she is about another surgery!
And to brag a bit, SP made Honor Roll! We couldn't be prouder of our brave girl and all she continues to face with a smile.
Just starting out
Posts will be out of order and dealing with older issues until I get caught up and then it will be in real time :)
Friday, November 27, 2015
Wednesday, November 4, 2015
How October Went
October was a very busy month for us.
During the Rheumatology appointment SP's Methotrexate(MTX) dose was upped and we're still watching her wrist- which thankfully does seem to be responding to both the MTX and Aleve- thank goodness!!! After her 3rd dose (this Saturday) of the increased MTX I need to take a picture and message it up to her Rheumatologist and then it will be time to play phone tag. Another cortisteroid injection and fluid draining might still be needed on the wrist, but Dr Rose is hesitant since the skin is thinner and there is more chance of dimpling.
Here is her wrist in early October, the swelling/big lump is much smaller now- will update with a currrent picture soon.
The next day at our appointment with Ophthalmology, I was very thankful for the increased dose of MTX- the eye inflammation was back! and the scar tissue is either building back up or is just enlarged due to the inflammation. We really want to avoid oral steroids if at all possible, but whatever it takes to get that eye quiet we will do. So back on the steroid eye drops, 4X a day and then another follow-up a week later.
EXTREMELY relieved to find out that her eye is responding to the drops! The inflammation is lessening and we will begin a slow tapering of the drops. As for the scar tissue, another laser procedure might be needed to attempt to break that back up. Our Dr doesn't want to have to surgically go back into her eye if it can be avoided since every invasive surgery carries the risk of inflammation.
Our Super Girl
While dealing with those issues we also had a few unexpected ones tossed our way.
SP had a mole appear on the back of her neck and grow and grow over the course of several months. It got very irritated from being caught by the brush and comb, and yes, a few times Mommy caught it with her nails-oops! So we had a pretty normal visit to the Dermatologist and it was removed. Didn't think anything of it until a few weeks later I received a call from the dermatologist himself, that's when I knew something was off.
Yup, leave it to SP- it was an uncommon mole called a spitz nevus It is thankfully benign! The Dr wanted us to come back and unfortunately widen the original excision site to ensure it was all removed. SP was pissed- no other way around it, she was one mad little girl. The first time when the mole was removed she was the champ she always is, amazing the Dr and his assistant. This time she showed every oz of her 7 yr old fury! But in the end we had it done.
The new wider healing site.
Monday got the news- results are all scar tissue with no remnants of the mole. YAY!
Unhappy that she needed it done, but at least now we know the 1st removal was completely successful.
And with everything else going on, no surprise a rash appeared around her mouth and nose. The nurse at Dupont did not think it was related to the MTX and suggested we see our Pediatrician. We did and he believed it was Perioral Dermatitis and prescribed some gel for it and recommended we ask the Dermatologist as well. Which we did and he agreed with our Pedi. Sadly I think the gel irritated the area even more!
So we discontinued it and went with moisturizing lotion and then nothing and now it is thankfully clearing up!
Her nosebleeds are also now a thing of the past- Like I said, poor girl has been dealing with so much this month!
Good thing SP is a child and doesn't stress like adults do, nor do we try to overwhelm her with these issues. One day at a time and trying to keep things as normal as possible.
Halloween Fun!
Happy Hauntings at Dutch Wonderland :)
The end of the Fall Soccer Season :D I'm tired and thankful it's over! The kids had a blast, and it's good exercise for them, but the 3 different practices a week and games on Saturday was a lot with everything else going on, so it will be nice to have a break over winter.
SP heads back up for another eye appointment on November 17, so please keep her in your thoughts and prayers that the eye inflammation continues to improve.
Thank you!
During the Rheumatology appointment SP's Methotrexate(MTX) dose was upped and we're still watching her wrist- which thankfully does seem to be responding to both the MTX and Aleve- thank goodness!!! After her 3rd dose (this Saturday) of the increased MTX I need to take a picture and message it up to her Rheumatologist and then it will be time to play phone tag. Another cortisteroid injection and fluid draining might still be needed on the wrist, but Dr Rose is hesitant since the skin is thinner and there is more chance of dimpling.
Here is her wrist in early October, the swelling/big lump is much smaller now- will update with a currrent picture soon.
The next day at our appointment with Ophthalmology, I was very thankful for the increased dose of MTX- the eye inflammation was back! and the scar tissue is either building back up or is just enlarged due to the inflammation. We really want to avoid oral steroids if at all possible, but whatever it takes to get that eye quiet we will do. So back on the steroid eye drops, 4X a day and then another follow-up a week later.
EXTREMELY relieved to find out that her eye is responding to the drops! The inflammation is lessening and we will begin a slow tapering of the drops. As for the scar tissue, another laser procedure might be needed to attempt to break that back up. Our Dr doesn't want to have to surgically go back into her eye if it can be avoided since every invasive surgery carries the risk of inflammation.
Our Super Girl
While dealing with those issues we also had a few unexpected ones tossed our way.
SP had a mole appear on the back of her neck and grow and grow over the course of several months. It got very irritated from being caught by the brush and comb, and yes, a few times Mommy caught it with her nails-oops! So we had a pretty normal visit to the Dermatologist and it was removed. Didn't think anything of it until a few weeks later I received a call from the dermatologist himself, that's when I knew something was off.
Yup, leave it to SP- it was an uncommon mole called a spitz nevus It is thankfully benign! The Dr wanted us to come back and unfortunately widen the original excision site to ensure it was all removed. SP was pissed- no other way around it, she was one mad little girl. The first time when the mole was removed she was the champ she always is, amazing the Dr and his assistant. This time she showed every oz of her 7 yr old fury! But in the end we had it done.
The new wider healing site.
Monday got the news- results are all scar tissue with no remnants of the mole. YAY!
Unhappy that she needed it done, but at least now we know the 1st removal was completely successful.
And with everything else going on, no surprise a rash appeared around her mouth and nose. The nurse at Dupont did not think it was related to the MTX and suggested we see our Pediatrician. We did and he believed it was Perioral Dermatitis and prescribed some gel for it and recommended we ask the Dermatologist as well. Which we did and he agreed with our Pedi. Sadly I think the gel irritated the area even more!
So we discontinued it and went with moisturizing lotion and then nothing and now it is thankfully clearing up!
Her nosebleeds are also now a thing of the past- Like I said, poor girl has been dealing with so much this month!
Good thing SP is a child and doesn't stress like adults do, nor do we try to overwhelm her with these issues. One day at a time and trying to keep things as normal as possible.
Halloween Fun!
Happy Hauntings at Dutch Wonderland :)
The end of the Fall Soccer Season :D I'm tired and thankful it's over! The kids had a blast, and it's good exercise for them, but the 3 different practices a week and games on Saturday was a lot with everything else going on, so it will be nice to have a break over winter.
SP heads back up for another eye appointment on November 17, so please keep her in your thoughts and prayers that the eye inflammation continues to improve.
Thank you!
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