I was hoping for more.

Well Taylor had her surgery last week.  I had to go without my husband because he had to be out of town for work.  This wouldn’t of been a problem normally but Taylor got sick on her regular scheduled date of surgery so we had to move it.  

 Taylor’s voice had been so strong for so long I was hoping for some great news.  Like maybe not a lot of growth.  But not really.  She said it was pretty the much the same as last time.  The location of the paps was a bit different so that probably had a different effect on her voice.  Which is good in a way I guess.  I mean our main concern is that she is breathing good.  Then it’s does she have a voice a communicate with.   Now that she attends school this is almost as important as that. 

She said let’s just schedule another surgery for 3 months.  I’m still praying for that miracle for her.

Sick

Taylor was going to have another surgery this morning.    We canceled it.  She started coughing on Monday and the cough has gotten worse and now she has a runny nose and is all congested.  I think she is ok to go a couple more weeks without too much of a breathing  problem.  I just need to monitor her closely. 

It’s just so stressful because you work yourself up for this moment because surgery is never easy and then you have to make a decision so early in the morning about either going ahead with the surgery or waiting.  Both which are stressful because if she has the surgery there could be possible complications and if she doesn’t get it there could be possible complications.  Added stress that is not wanted or welcome but unavoidable.    So making the choice not to have the surgery and wait was made.   

I might of actually scared her today.  I was just so upset about making the choice that I started crying and saying that I was so tired of all of this.  I just want it to go away.  I looked at her and she looked so wide eyed.  I then realized I needed to calm myself because it wasn’t going to help her in any way.   I know she goes through much more stress then I do about it.

It’s been a strong 8 weeks.

These past 8 weeks have been the longest that Taylor has had a strong voice.  It just started a couple days ago to change.  I was hoping they weren’t returning.  I was hoping her body finally said that’s enough.  But no such luck.   She does have a cold, which consists of a runny nose and cough so I’m sure that doesn’t help the situation.   Her next surgery is scheduled for Oct. 21st.  Maybe when her doctor looks there wont be much to remove.  In the past she has had the paps right at the center of her vocal cords so even the smallest of smallest will cause her voice to strain. 

She has started school recently.  This was a big step for me.  Not having her close.  Not knowing how she is doing.  Wondering how the other children act when her voice is becoming harder to hear.  I picked her up the other day and she was kind of sad so I asked her if something was wrong.  She said no.  I asked her who she played with.  She said I played by myself.  I didn’t feel like playing with anyone.  It tore at my heart.  I wanted to know exactly what if anything had happened.   I was worried.  Did some kids ask about her voice?  Did they make fun of how she was talking?  What could I do?  I have no control and kills me.  I can’t be there to help her.   She is so young and school alone is new to her.  How she reacts to this disease and what others say will be knew to her too.  I wish I could be right there next to her the whole entire time.  But I know in the end she has to figure it out herself.  

 Then I thought maybe it was nothing and she just really wanted to be by herself.  That happens with Kids Right?????

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.