Sunday, September 29, 2013

Last week... this week

Last week's fill went awful, I dont think I got anything in. I counted it as a loss. I am not sure what was going on, but she was in pain and I just stopped and started over, more magic cream, and it still was hurting. she was flinching and moving, something she never does so I just told her great job and that we were done. I couldn't get the placement right or something I am not sure, it just felt off so I just pulled it.

That was last Sunday night

I then had surgery Monday and there was no way I could have done a fill this week, we will however be attempting one tomorrow night, I am feeling much better and I think things will go better, or at least I really hope so. I hate that we had the wasted (or so it felt like it) non-fill last week, but I'm not going to hurt her. The last time it hurt she had an infection and we didnt know it yet. I dont think now that she has one, if she did she would have become red, swollen, and sick over the past week, but the fact that it hurt was enough for me to hold back and just see. It's been fine though.

I wonder sometimes if she is developing a tolerance to the magic cream. I think I will leave it on a little longer this week to see if it helps, we normally leave it on about 20-30 minutes, I think I will try 45 tomorrow night and just see if it will control her pain better.

I will be so happy when we are done with the expander, This should be our only expander. Her nose and lip, will probably have to be done with a graft or excision only.

Here's to a better fill tomorrow!

Thursday, September 19, 2013

Communication.... Or the lack of

Apparently I had missed a phone call yesterday from Birmingham, I know exactly when I missed it, I was on the phone with Pre-op with the Hospital for my surgery on Monday. The call waiting just said "unknown" number "unknown" I had the thought that if it was very important that they would call back or leave a message. Neither happened so I figured it was either not important or a wrong number. It was however important and no one left a message or called back.

We left for Birmingham early this morning at 6am, her appointment was at 11am. We were hoping to be seen early and head back early. We get there at 10:05 and sign in. I get called to the window at 10:20. Our doctor is not there all his appointments have been rescheduled for "personal reasons". He was also not in the office last week. They called the PA. She was the one I talked to last week. She said she called yesterday to tell me the appointment was moved to October 10th and that they overnighted me the supplies I need. That was awesome........ EXCEPT I was already in Birmingham. I had already driven 4 hours to get there, I had already paid out the 150$ to get there and back. So we leave, There was really nothing else to do. We drive back to Mobile and my supplies are waiting for me when I get home.

I am not sure how I feel at the moment. Who only calls once, when they know I live 4 hours away! Its so aggravating.

Tuesday, September 17, 2013

No News..... Road Trip?!

I havent heard from Birmingham yet, so we are planning on heading up Thursday morning. While we were hoping to avoid this one trip up there, sometimes things work in a way they need to and if we have to go maybe we really need to go. May be her surgeon needs to see her progress, we probably need to be scheduled in anyway. I didn't really think about what we were suppose to do after her expander was full. Do we call and say "hey we are done"? He's usually booked up a month or so in advanced so with 6 fills left to do we probably need to head up and talk about what will happen on expander removal day and when that will be. It will give us some comfort of having him see our handy work at filling and how well she is doing. The only draw back is the long ride there, the 45 minutes we are actually at the office and then the long 4 hour ride back. He appointment is at 11am so we should be back by dinner Thursday. I will be sure to update on what the doctor said after that.

Monday, September 16, 2013


We have 175cc in. If we can continue to doing 30cc a week for the next 6 weeks we will be at out goal of 350. (355 actually). I'm really excited about that. We are still hoping to get supplies shipped. Haven't heard from them today yet. But having done 7 fills at home and with only 6 (hopefully) to go, I can finally see the light of the expander being done. We of course won't be completely done with removal, but we will be so much closer. And the majority of the Nevus will be gone. We are ready for the next step!

Friday, September 13, 2013


Heard from birmingham today, they said they use to ship supplies all the time, but it has recently changed and they can't ship the numbing cream anymore. Lucky for us we have plenty of that. The only thing we are not really sure of is the Needles. She's going to check for me on monday and if they can ship it they will. If they cant ship it, she is going to call home supplies and see if our insurance will pay for us to get it from them, If they will pay for it through them, OR if it is cheaper or about the same to just buy the supplies (under 200$) then we will do that. If its more we will drive to birmingham see the doctor for a check up and drive home. PLEASE pray that they can ship it to us, or that we can get it from home health here fore a lesser price. It would be so much better on us to no have to go all the way up there to be told what we already know, and that is Haleigh is doing wonderfully!

Wednesday, September 11, 2013

145cc and Growing

We have added 145cc in Haleigh's expander and she's doing wonderfully. Her skin is stretching with out marks or thinning. I called her doctor about not going to her appointment on the 19th. He had said that of she was doing really well, we would send pictures and ship supplies, I am hoping they are still willing to go that way. It will save us about 150$. While thats not a huge amount, when your paying for it all yourself and haven't done a fundraiser in a while then its a burden. We actually have a yard sale planned for the 2nd weekend in October, That will hopefully pay for her next trip up in November for the removal of the expander, those trips are a little more.... Around 200-250$ just because we are there longer. The gas is the same, as we drive to the hospital and home, the trip is spent in the hospital, they have a lot of food choices around and a cafe open 24/7. I am so happy that this round is going better than last time, No signs of infection or even it bothering her at all. Im sure that may change since its only half filled at this point. But right now things are good, Right now she is healthy and she is handling everything with great attitude.

Tuesday, September 3, 2013

Fills, Fills, Fills

Another fill last weekend went wonderful, they are getting faster and easier, as Haleigh becomes more at ease knowing its not going to hurt, and I become a pro at just how far to insert the butterfly so that the saline pushes in smoothly. I was able to easily get in 30cc again and thats our weekly limit. I've seen other people who have expanders do more than the 30, but that is what our plunger holds, so I'd have to change it out to do more. Thats a lot to ask from a 4 year old, so we do a max of 30. And really the slow and steady seems to be working well for all of us.