Most recent surgery

I just realized I never posted about Taylor’s most recent surgery.  We had requested a different anesthesiologist this time, but she was unavailable but the doctor we got was great.  We will definitely request her again.

Taylor did excellent.  We we are so proud of her.  Her doctor came in and Taylor actually looked her in face prior to surgery.  Usually Taylor hides.  The nurse came in to take her back and Taylor looked at me and said. “Mommy I’m not scared any more.”  I started to cry but held back because I didn’t want to make her upset.  She is such a strong little girl.

Her doctor came in and said it was still just that small pap right at the center of vocal cords.  Nothing more.  Which is great.  She  said  hopefully this is a sign that it is slowing down.  I pray this too.

We will reschedule her again for 12 weeks.

Good or bad?

Well Taylor got scoped on Friday.  She did so well.  I was so proud of her.  She never flinched or anything.  Just sat there so her doctor could get a good a look.

She said that she has a good airway but a small pap right at the V part preventing it from coming together.   So this why her voice is at a whisper.   She offered to do surgery this coming wednesday but I declined.   She is not in school as of yet and we can hear her whispers and I don’t really want to put her under more often then needed.

So good news that it’s just a small pap and sucky news on where it’s located.  I pray this is less and less for her.

No choice

Well we taking Taylor in for a scope on Friday.  I really don’t want to put her through that because I know it’s traumatic but her doctor said she wanted to look and if her airway is closed too much she will “fit” her in next week.

Her breathing doesn’t seem compromised to me at all.  She is running and playing like normal and not gasping for air which is good.  But I know when she get’s tired more often it is effecting her.   So wish us luck.  Her next scheduled surgery isn’t until the 29th of April and I would like to keep it that way.   The only thing is she barely has a voice especially since she has a bit of a cold.

I also started a forum online for support.  It’s for all parents of children with a chronic illness.  A place to others with who may be going through the same fear and anxieties even if the conditions are different.

Come and see

That bubble burst fast.

Well it’s just over 4 weeks since Taylor’s last surgery, the one where we had a little bit of good news.  Well her voice is deteriorating fast this time.   Now that doesn’t necessarily  mean there are more paps although that is a possibility, but it could mean the location is right on her voice-box.  Which sucks because it really effects the quality of her voice.   And then were put in a bind do we take her in again so soon so that her voice is stronger or do we wait until regular surgery time.

I’ve been watching her breathing and it’s not labored and she doesn’t have stridor so we are going to play it by ear as usual.

This disease is so frustrating.   Sometimes I’m so positive and strong and then this happens and slaps me in the face and I it’s hard to get back up.  I need a support group for mothers of children with chronic disease.   I wonder if one exists.

Good news and sad news.

Taylor had another surgery at the beginning of Feb.  I was having problems with my computer and couldn’t post about it.

The surgery went pretty well.  She did throw up 3 times after this one, which she has never done before.   So we are going to request a different anesthesiologist next time.  He wasn’t very friendly with Taylor or us for that matter.

Her doctor said it looked like there was less paps and not directly on her voicebox like before.  She said let’s go a couple of weeks longer and see how she does.

This is the great news I was hoping for.  The longer spans in between surgeries.  I hope this means her body is finally kicking in and doing what it is suppose to do.

On a sad note a young lady who has been dealing with this terrible disease died earlier this month also.  She lost her fight but she was an inspiration through it all.  She was so amazing.  I never actually met her but I will never forget her.  May she be at peace now.

Praying for continued progress for all those afflicted with this disease.

New Year

It’s been almost 6 weeks since Taylor’s last surgery and her voice is still strong.  I almost hate to say anything for fear it will spoil it but I’m so happy.  Usually by 4 weeks we notice a change in her voice.  This time it hasn’t happened yet.   Now that could mean a few things but the one I will mention because it’s the one I’ve been praying for  is that the growth rate is slowing down.

She did have walking Pneumonia two weeks ago and was on a strong antibiotic.  This is the third time she  had this.  I wonder if little kids can get the pneumonia shot?  So I’m not sure if that could of had anything to do with this either.

I’m lost.

Taylor had her surgery and it went well.  She of course still cries when she leaves us to go to the operating room.   It never gets any easier.

The nurses always say you probably know this routine better then I do.  I always say well unfortunately you might right.  But I wish they wouldn’t say that.  I know they are only making conversation but it just reinforces that we are hear all the time.  It hurts my heart and makes me sad.  I don’t want to know the routine better then them.

I’m Having a hard decision to make.  Taylor’s doctor said she is leary of recommending the artmisinin for Taylor because she is so young.  She said it’s not a cure it  just manages it.  Well I would take that.  If it could prolong her surgeries that would be worth it.  But she said with the potential of liver damage she said she personally would hold off until she was older.

She did say we could try cidofivor on her but it’s something like injections every two weeks for a couple of weeks.  I can’t remember the exact regamin but it seemed like a lot too.  And of course their is no guarantee there either.  IT doesn’t cure it only prolongs the surgery.  But their is also a potential risk of cancer later her in her life.

So I don’t know what to do.  I’ve been asking God for guidance and I’m not seeing it if he is showing it.  I don’t want to be to hasty in my decision.  I want what will ultimately be the best for Taylor, but I’m lost.

Postponed surgery

Well the doctors office called yesterday and wanted to reschedule  her surgery that was scheduled for next week.   Sure I guess doctors have things that come up.   But this seems like a planned day off.  If you know that far in advance I guessing it’s a conscience decision.   It’s not like she woke up sick.   If she was having a surgery that wasn’t life threatening like having tonsils removed I wouldn’t be the least bit concerned.  But Taylor’s condition can be life threatening if left alone for too long.

Should I be concerned?  Does this bother me? I would if Taylor was having difficulty breathing at this time, but she isn’t.  I would if she didn’t have a voice, but she does, well sort of.  I don’t know if it’s because I’ve been dealing with this disease for almost two years and am just more comfortable with it.  No, I don’t think that’s the right word.   I think that it’s I’m just more at ease with it.   I can’t let it rule our lives.

On another note.  I belong to a couple word of mouth companies online.  It’s where they give you products to try most of the time for free and you give your honest opinion on the stuff.  If you like it, you tell others about it.  If not you tell them why you didn’t and look to improve it.    They are kind of neat to do.  Well last week they gave me Sinupret to try at the first sign of a cold.   It’s all natural ingredients and has been used in Germany for years.

I thought heck I’ll give it a try.  Taylor started having the sniffle and sneezes on wednesday.  I started giving it to her then.  I gave it again on Thursday and Friday.  By Saturday she seemed to have improved greatly, but I still gave her another dose then and on Sunday too.  Now that’s a great product if it kick’s a cold’s butt in 3 days.  But that wasn’t the most amazing thing about it.  On Monday of that week Taylor’s voice was very hoarse and raspy.  Sometimes you couldn’t even hear her.  But once I started giving her the Sinupret her voice started improving a little each day.   It’s not as strong like right after a surgery but it’s much stronger then it was earlier in the week.

Now I don’t plan on giving this to her every day, but I’m curious to see if there is any difference in her growth pattern.  It claims it boosts the immune system.  I’ll post more later after her surgery, which as the title stats has been postponed.

Still here

It’s been a while since my last post.  Things have been crazy around here this past month and a half.  Now things should slow down a bit.

Taylor voice is very hoarse again.  This time her voice was stronger longer.  Is that a good sign?  I sure hope so.  I so prayed that her own immune system would kick in and cure this.  And that I wouldn’t have to give her medications that could in long term hurt her even more.

I am strongly looking into starting  her on Artemisinin after this next surgery.   It’s an herbal treatment mainly used to cure malaria.  It has also been found to be effective against some cancers.  Some in the rrp network feel it’s helping them.  So what the heck.  It’s used on millions on people and it’s a herb.  Sure there are risks I’m sure, but isn’t their with everything?  And this seems to have the least amounts of risks at this point for her.

Her next surgery isn’t until next month.

Still praying!!

embracing your differences

Sometimes when it comes to Taylor and her voice I feel like I’m always trying to explain it in some way to someone.

For a long time I just wanted to stay at home when her voice was bad and she could barely talk. I got tired of thinking of new things to say or tired of continually saying the same stuff over and over. I don’t go into detail with strangers who say “oh boy it’s sounds like she has is losing her voice.” I usually just smile and say “Yep.” Or “What happened to your voice little one?”

I think I might of been a little embarrassed about it in a way. I mean what were people thinking when they hear her speak? Do they think that I am mean and let her scream so much that she lost her voice? Then I realized this is not about me at all it’s about her. If I keep her sheltered from the world then she wont flourish and grow.

I’m a very private, keep to myself kind of person especially when it comes to my children. So I bet your wondering why then would I be posting this about my daughter for the whole wide world to read. I came to the conclusion that it is a part of my daughter whether I like it or not and I need to accept it and celebrate her. Not fear over what others are thinking about her or me for that matter because she doesn’t have voice at times. I am very proud of my daughter who is bright and beautiful even without a voice. I’m embracing her differences instead of hiding them.

So I’m not explaining any more to you passer byers and why should I. This is my daughter and this is her voice. If you have a problem with it then it’s your problem not ours. If you want to stare at her go right ahead she is beautiful. And I’m going to raise her to be a strong take no shit from anyone kind of women.