Wednesday, October 30, 2013

We have a date

Surgery to removal the expander and the Nevus is set for November 19th a Tuesday. I got t chose between that day and the Tuesday before Thanksgiving, that would mean Thanksgiving would not be a happy day for Haleigh. So I went with the earlier date. She has a Check up/ pre-op on the 11th. We must keep her well! We have to get rid of his cough and be careful. I understand you cant always keep kids from getting sick especially since I have other kids in school. But, I bought her special vitamins that have extra C in them and after Halloween tomorrow and the Fair on Sunday afternoon, we will be very picky on where we take her. No Wal-Mart for sure. And the week before surgery no Church, no nothing. I am even cutting her birthday small. I know that may sound over the top, but this has to happen on the 19th. I need this to happen with out delays because she is sick. She is ready to be done, I am ready for this part to be over. This has been physically and emotionally draining. The surgery is physically and emotionally draining as well and I am so tired already. I need this to be done before Thanksgiving, way before Christmas! Please pray that Haleigh gets and stays well and that surgery goes well for her.

Tuesday, October 29, 2013

Better... Lost


Haleigh is feeling better, we probably will not be doing a filling on Thursday, she needs to be completely well for that and still has a cough. I don't think I will need to wait another full week though. I am thinking by Saturday or Sunday she should be well enough to have a fill done.

We are taking our family to the fair on Sunday afternoon, its suppose to be a beautiful day. We were going tomorrow night, but I think it will be better for Haleigh not to be out on the windy mid-way at night. Got to keep that girl well!


I'm thinking maybe my message to the surgery scheduler got lost somewhere. I was told she should call me by today and well she didn't. I am going to give her a couple days I mean maybe she is trying to get us in so we are not there Thanksgiving Day. I would rather not be there that day. I really do want to know when its going to be though. I am a planner and I cant plan without a date.

Monday, October 28, 2013

Cough, Cough, Smile

Haleigh still has a nasty sounding cough. However she is Happy as can be and feeling good. I don't believe this cold is going to stick around very long. We want it gone!

I talked with Birmingham this morning and they are scheduling her surgery and calling me back today or tomorrow with a surgery date. Said to make sure she is drinking a lot of fluids and as long as she has no more fever she doesn't need any meds at the moment. If her expander gets red call right away and We can move surgery up or give her antibotics if needed, but because of all the new super bugs out there they don't like to give meds unless they actually are developing an infection. I agree with that.

Not much longer!

Sunday, October 27, 2013


Haleigh developed a cough yesterday. And a slight fever early this morning. It was 100.5, nothing big. We didn't treat the fever it went away on its own. Today her nose is runny and she has a cough. I know she got this virus from Landon. He's been sick most if last week and is getting better now.

Please pray Haleigh gets better fast. 

We can't fill when she's sick. I am calling the dr tomorrow because apparently some of the other kids that have expanders when they get a cold the dr puts them on antibiotics because the virus can settle around the expander and develop into an infection. So they prevent that with antibiotics. I don't like to use antibiotics when I don't need to. But I guess this is a need.  We also can't remove if she's sick. So she really has to get better! 

Saturday, October 26, 2013

Yard Sale number 3

Today we had a yard sale to help with Haleigh's expensive trips to Birmingham. We made 130$. That is going to pay for about half of our next trip. Thank you to everyone who has helped out.

Speaking of next trip. I called Birmingham and will call again Monday if they don't call me back. I am so ready to get the surgery scheduled. This will be removal surgery so it's a little more detailed a did course we will be staying over night in the hospital. 

I will update when we have the big news. 

Thursday, October 24, 2013

Wednesday, October 23, 2013


Haleigh is getting uncomfortable and I don't blame her. If I had a bubble on the side of my face I would be uncomfortable too, Honestly I would have been complaining long before now. I am amazed by the ability and strength my daughter has.

We are at 250cc of saline now and we will try to add in another 30cc tomorrow night. I have had to give her Motrin this week because at first she said her bubble hurt. Now she says its pulling her nose. And I can see how it feels like its pulling her to one side. I can't wait to have this part of the process over with. I know I have said this over and over, but I hate the expander. I love that they were invented and are there to help children and others like Haleigh, but I hate dealing with them. I never wanted to do expanders and I am praying we never have to do another one. I am in awe of these other parents who do 3,4, or more rounds of expanders. I am not sure I would be strong enough to handle round after round of this. But I also never thought I would be strong enough to do one round, I never thought I would be able to fill her bubble at home myself, and I do that. I guess you never know what you can do until you are given no choice.

So Haleigh is uncomfortable but not in pain. Her bubble still has a way to grow, and I know she's going to be more uncomfortable as time goes on and it stays bigger after each fill. But we dont have much longer. I should have a removal date in a couple weeks. I can call them when I get to 280-300 and we will set surgery 2-3 weeks from then. If we can get the 30 in this week we will be at 280. We are looking at the week of Thanksgiving at that point.

Thursday, October 17, 2013

Another fill up

Everything went great tonight. So excited. Skin look great. Was able to easily get in 30cc tonight. So we are at about 250cc. Not much longer!

Monday, October 14, 2013

Back on Track

We made the trip to Birmingham last Thursday and after massaging the expander and tilting her head just so we were able to get 30cc in. I was so excited that we didn't have to have surgery.

The first try the dr did was just like at home.... Nothing. So I am not crazy it was/is not exactly right. Our options were  to go in and see the line and port to see if It was kinked or blocked with scar tissue or keep trying. We tried again after the dr massaged the expander and he had her tilt her head over and it went in. I have a lot of Hope that this weeks at home fill will go smoothly. 

With the 30cc we got in at the office we are at 210cc total.  Our goal is 350ish. We will set up surgery date when we get to 300. I hope to be able to get in 30 a week still. But her expander is bigger now and it stays tighter for longer so we may not be able to get 30 in every week. But our personal goal is to have surgery in about 6 weeks. That puts us at thanksgiving. I'm ok with that. I want her good by Christmas. 

Haleigh is doing really well. Learning and playing. She's so smart and is wanting to start "real school" next fall. I pray I make the right choice when it comes to her starting school. When and where.

Friday, October 4, 2013

Another Bad Fill

Again We couldn't actually get her expander to fill. I hope its something I am doing wrong. I want to be the cause of not doing the fills right. What I do not want is there to be a problem with the expander and for us to have to take what we have gotten so far and do another round of expanders. I want to be done! I NEED to be done! I am tired! Haleigh is tired! I dont want to deal with this any more, I want her to be able to go to moms day out and make friends, I want her to be able to go to school next fall without having to miss school for surgeries. I should have started earlier, I should have made better choices when she was younger. This all should have been over and done by now!