Birmingham

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!

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.

School

I have been thinking a lot about Haleigh starting school. As she will be 5 in November she can start K-5 in the Fall of 2014. Along with 2 of her cousins. But I worry she will need to miss a lot of school for surgery, and if she has an expander in, I'm not sure how that would work. I would worry she would get hurt at PE, or get an infection, or get sick right before a surgery. I know we can wait another year and we may, but she really is ready. We do things at home, but I know she wants to go. This is the whole reason we wanted to start removal when she was a baby, when she was much, much younger. So that by the time she started school there would be no more surgeries and she could start school when she was 5, just like everyone else and she wouldn't miss anything because she would be done.

Now I know there are summers where she could have surgery then, Christmas brake, Spring brake. But what child wants to spend all their time off of school getting surgery. Thats not fair either.

I'm not sure what the answer is. I thank God we have another year to decide what is best for her, and that we are in a very small school system so, I believe we would get extra help from them if needed for surgery. K-5 is the best time to miss a lot of school, if your going to miss. Its not Mandatory they even go to K-5 they can just go into 1st grade after they turn 7, so yes we could actually keep her home for 2 more years, but I think by that time she would just walk herself to school. She's already very smart, I dont want her to be behind every other child in her class, because she needs more surgery.

Such a hard choice that I must make for her

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.