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This last year has been a calm one compared to the last few. Especially for Haleigh. 

There are a few things I forgot to blog. 

1. Graduation! Haleigh graduated from kindergarten on May 19,20015 

2. Haleigh prayed to revive Christ on June 8,2015 

3. Haleigh has decided she wants to have the Nevus on her nose removed 

I struggle with this because I of course want what's best for her and as her parent I make all her choices for her. So ultimately this is my choice to make. However we have always let her lead these choices and I have faith that she will not regret asking for this later in her life. 

The before appointment 

We had her pre-op appointment todY and there are 3 things stdnding in the way of what she wants done. 

  A. She still has a bit of nevus on her cheek ad her eye is dropped down. We have to remove the spot and bring up her eye first. That will happen the First week of August. Before school starts. 

 B. She has a tan. We apply and reapply sun block to no avail. She has not gotten burned at all she is however tan. We must wait until her tan fades some before we can do this surgery. He said he needs a better natual color line first. So we are thinking Christmas brake. 

3.  There are two ways we can do this. A small expanded placed in her cheek. Or a skin flap brought down from her forehead. That would leave a scar on her forehead. Haleigh doesn't want an expander. However when she's older I think she would want that insead of another scar on her head. Jason and I talked and I am 95% sure we will be going the expander road again. 

Haleigh is have a great summer and I will be updating more often now that there is something to write about. 

Removal Surgery is Set

We will be at the Hospital in Birmingham at 8 in the morning. That means we need to be on the road at 3 in the morning. I will not sleep tonight. I will try but it will not happen. I will however lay and rest as early as I can. Probably around 9 tonight. I have somethings I must get done after the kids get home tonight. I have the all squared away. I know who is going where and when and with who. Everyone is taken care of. I just need to pack and get there before I explode. My anxiety has gotten really bad this month. More than ever before. I know it has more to do with me than Haleigh actually having surgery, but it still makes it worse. I will survive this though. Haleigh WILL be fine. We will go, have the expander removed, have (we hope all) her nevus removed and then we will home the next day. She will not have any problems. She will be ok, I will be ok. We can do this, I GOT THIS!

Done!!

We are DONE with fills. Compleatly Done. After the no fill that was Monday night, I decided to try again today before everyone came home. It worked. Haleigh was still and we were able to push 15cc in slowly. Her expander is really tight and there is no way I would have been able to push any more in. So that's it we are over 350 and done. I told Haleigh it was the last one. She knows we are going to Birmingham in 6 days and they are going to "take her bubble out" she's so excited. I am too.

Halloween and an Update

Haleigh had a great Halloween. She was Bat Girl. She was so excited, First we went to our church fall festival, then we went trick or treating. Every house She said "Trick or Treat and Thank you" So very cute. I was really glad she was feeling better. I have had sick kids on Halloween and kids who have been in the hospital even on Halloween, its not good, they miss a lot of fun, I am really glad that she was well enough to go out, and enjoy the events. She got lots of great treats, that are being handed out one by one slowly. 

11-02-13

We did a 25cc fill last night. The skin and expander felt tight at that amount so we stopped there, even though the water was flowing in nicely still. I kept asking her if she was feeling any pain and she said no. About an hour later she said her bubble hurt. I felt of it, No fever in it, not red, just tight. So I gave her some Advil and she watched The Little Mermaid and went to sleep. Around 3 she woke me up and told me her bubble hurt really bad so I gave her some more Advil and put her in the bed with me, 430am she was tossing and turning so I woke her and she said her bubble still hurts and started to cry. That is the hardest thing about this whole process, you as a parent know you are doing what it right for you child, however you also know that its hard on them, you know that what you are doing is causing them physical pain, and that's hard. But hey no one said being a parent was easy. We make have to make hard choices for our children everyday. So I gave her some Rx pain meds and with in 30 minutes she relaxed and was sleeping. She slept until 11am. Ate and I went ahead and gave her some Advil, she seems to be doing ok this afternoon. playing on her games, running around outside and even fighting with her brothers. All very normal Saturday events.

 I am debating on how much to fill next week. We only have 3 fills left. So do I fill as much as I have been and just give her Rx pain meds that night, or do I fill and expand less. We have a goal of 350ish and we are at 310. Only 40cc more to go before goal, and we can "overfill" if we get to that point. Some parents actually fill twice a week in the end, and we could do that, doing less of course. We would do 10-15cc on Thursday and then again on Monday. Its an option. maybe that would keep her from having any pain or discomfort. Its just so hard to know what right is.

I am excited to be done with this expander. I know I keep saying that, but its only because I really am. And Haleigh is so ready to have her bubble out. Just ask her, she will tell you, she's ready.

310

We have been fever free for over 48 hrs and on antibiotics for 48hrs. That meant we got to do our fill tonight. 25 more cc's in for a total of 310!! Haleigh is doing so well. I am so proud of how brave she is. 18 days until surgery 3 more fills!! Excited doesn't begin to cover it. 

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.

285

30 more cc in total of 285! Getting so close!

Uncomfortable

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.

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.

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.

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.

Another Week

Haleigh had another great weekly fill tonight. We don't always do fills on the same day each week, we kinda wing it. Mainly because Haleigh has to have things in just a way so she doesn't freak out. Both hands held one by Jason one by her aunt Heather, sitting in her sisters lap. Magic cream on, and she wipes it of her self. Everyone must watch and make sure i don't poke her. And I must tell her I/m already started before I really have so that she will sit very still for me. She is doing so well. Tonight we   got 20cc in. Last week we did 30cc. The fluid was going in really smoothly, but last week her incision looked a little stretched to the max, so I was a little worried that putting in 30 more, would be pushing it. so I backed off just a little. It doesn't look as strained so I think we did it right. I'm not sure of the total amount of fluid we have gotten in and I'm not sure what amount we are aiming for before removal. I know I should probably know this information, but honestly I haven't thought about asking. Our next appointment is September 19th, but I am suppose to call the week before and if I think things are going really well, he may be able to ship me more supplies and we may not have to make the 4 and a half one way trip to be told she's doing great here is more supplies. I really hope we can just do the phone call and email photos, and ship supplies. It will save me about 150$ most of that in gas. Makes me wish I had a Coupe.

Filling up!!

Haleigh is doing great with this round of fillings. As long as she can sit in her sisters lap and hold her daddy's hand and have me do the actual fill  she's great. She cried for a split second today, but I was able to get 30cc in and it went really well. I'm excited to see these results.

Fills at home.

Haleigh is doing really well this round of expanders. We have done 3 fills so far, two of them at home. We have to have her sister Madalyn hold her or its a complete no go. I am so blessed with an older daughter who helps and knows she is needed.

Haleigh is not completely without fear of these fills. She says it hurts when I'm not started. But once the line is in the port and the saline is going in she's still and when I'm done she says "that's it, it didn't hurt". There are tears before from being scared but no tears after or during the actual fill. I feel bad because I have to be stern with her and tell her we have to and she must sit and be still. When what I really want is to hug her and tell her I'm sorry and never do another fill. Being a mom sure is hard. 

Next Up

Just a small update.

Haleigh is doing very well. She has fully recovered from her infection and two very close together surgeries. She's growing and becoming a big kids. Her next appointment is Tuesday the 23rd. We will be discussing when her next surgery will be and how to go about doing fills. I know I won't agree to do them at home. I'm not sure if the doctor will want to find a dr here or for us to drive to Birmingham every week. I don't think doing the fills at home was what caused the infection but I am not comfortable doing them at all. Especially since I'm on my own with no help holding or detracting her.

Home

Well we are home again.

Haleigh is doing good. Recovery is going well, she still has a drain and that should come out on Monday. She hates the drain and it's not my favorite thing either.

We go back in 3 weeks. Should have another surgery in 3 months and will go to Birmingham for fills every week for 10 weeks then removal surgery!

Did ya get all that? Cause my head hurts.

Removal Surgery

Well we had to take Haleigh back to Birmingham today. It was very rushed.

I called the doctor at 9 this morning and was put through to the PA because he doctor was in surgery. I described what was going on and she said since we were so far to e mail her some pictures and she would text them to her doctor. So I took 4 just the way she said and then sent her one from yesterday. It didn't take long. 20 minutes tops and I was called back with the news to head to Birmingham. The dr was in surgery and all he said was to head up. But he was pretty sure the expander was going to need to come out.

We got everything together and left the house by 11am. It was a rough trip. Haleigh didn't eat much breakfast and was hungry but she couldn't eat or drink anything.

We arrived at UAB AT 4pm. We had to stop twice for Haleigh to go to the bathroom.

We were taken right to Admitting and her surgeon came there he took one look and decided it needed to come our. We were take to her room gave her a bath and dressed her in her gown. I was telling her how we would need to take her bubble out but everything was going so fast that she was scarred. I tried my best to sooth her though.

By 530 she was all prepped and by 630 she was being wheeled into surgery. I then ate for the first time today.

Her surgeon said it would take about 30 minutes and it took an hour, he said there was just so much fluid and infection, and he had to leave a drain in as well. 1 in 10 get infected None of the nevus was removed. We can restart with a new expander in 3 months. 99.9% never have another infected expander. We will try again.

Haleigh did great as always in surgery and in recovery. By 8pm we were back in our room. Everyone has been awesome up here. And I'm confident in the care we are reviving and I know we are still doing the right thing for Haleigh.

I am so ready to have this chapter in our lives and I'm ready to move on. But I know we are not on my time we are all on Gods time. Everything happens on his terms not ours.

Thank you for all the prayers and thoughts for Haleigh today and always.

Updating 02-17-13

Today has been much of the same. Haleigh is very whiny she wants me to sit with her, but unlike yesterday, today I must get some things done. I have stopped and just held her so its taking me 3 times as long as normal to do things. But I am getting things ready.

Haleigh woke up with a slightly elevated temp this morning 99.9 and complaints of pain. So I gave her Motrin. I'm scared the pain meds are maybe hiding a fever, but I can't just let her be in pain.

I know she needs to be seen and probably Iv antibiotics. So we will be heading to Birmingham this week. I needed to get the house in order and all the clothes clean. The other kids need to have their uniforms all together and cleaned so I've been working on that today. I don't know how long she will need to be there buy looking at the pictures I know it will be an overnight stay.

I put together these pictures
The first is from Thursday, the second is yesterday and the third is today's.

Hold me

That's what Haleigh has said to me all day "mommy just hold me". So what do you do when there is dishes to do, a floor to vacuum, brownies to make, and clothes to wash? Well let me tell you as a mom when your baby needs you, the dishes wait, the floor had crumbs, the brownies burnt, and the clothes are still dirty, because I held my baby today. We watched Disney movies and laid on the couch. I then had to go to Madalyn's sift ball pot luck. And my mom watched the kids for me. I'm so glad she was here and ready to go if need be at any time. I come home and it's more "hold me". And that's ok. She needs me and i will by here to hold her. I wish I could take this pain and hurt for her. I hate it so much.

She's had 2 doses of antibiotics so far. And I don't see any difference yet. I know that doesn't mean it's not working just that I can't see it yet. I'm staying positive. This will work and we will continue with fill in another week (won't be able to do it this week). We will not loose the expander to infection and in a couple months we will have removal surgery!

Infection

Today Haleigh woke up and her expander looked red. I ran Madalyn to her softball practice and then came home to check Haleigh out. Took a picture and posted it on my support group page and everyone thought it looked infected. I called the doctor in Birmingham and he said we had 2 options. One we could drive there now and be put on Iv antibiotics until Monday when her surgeon would be back in. The coving doctor would only be there for a surgical emergency. Or we could start oral antibiotics at home and call back Monday. If she Is better Monday we will probably be seen by Friday any way. If she is not better we will be seen on Tuesday. If she develops a fever of 101.5 or higher we will need to head on to Birmingham for Iv antibiotics. I decided to try the oral antibiotics at home first.

This is so had. Haleigh feels bad. And as her mom I just want to make her feel better and I know she will be more comfortable at home than in the hospital. And then there is the drive there and back. I hate to even think about the money. And really I would spend every dime I have to make sure she gets everything she needs. But it's still stressful. I need to chill out and just think
about right now today and a day of toy story movies and Peter Pan. Let God take care if tomorrow and focus on my baby.

It's so hard!!

Please pray for Haleigh.

The first picture is from Thursday the 2nd one is this morning.