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.

A little fill

We did a small fill this afternoon. 10cc in. We could have done more I think, but I'm tired of her being uncomfortable after. So Monday we will be doing another 10-15cc. I think braking it up now that she's not scared if the fills is much better than the "as much as we can" approach. We are at 320.

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. 

285

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

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!

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.

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.

175!!

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!

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 week

I contacted the head of surgery at children's hospital this morning and he said that because of the placement ( face) he would suggest plastics help with the fills. I was transferred over there and the Dr was not in today but his nurse paged him. Dr. Harris saw Haleigh when she was under a year and he has the worse bed side manner, but he has agreed to try and help me with fills. He will do them if she will sit in my lap and let me hold her. She did while we are in Birmingham. Please pray this works if it doesn't we will have to travel to Birmingham every Thursday morning for fills. We were not prepared to have to do that and we have not raised the funds to travel there and back each week for 10+ weeks. It cost about 200 for each trip. We have enough funds left for 2 trips and Maybe a 3rd. But that's it.

I believe God will provide for us a way for Haleigh. And I trust that if we must go to Birmingham that means that is best and what God wants for her. I also trust that God will provide the funds in some way to make sure she gets there.