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. 

Another surgery in the bag

Haleigh had surgery in Birmingham in the 26th of June. She did so good.

The hospital is really great gave her lots I things to do, while we waited. I was so tired. We had to be there at 730am so we left home at 230am. Haleigh slept all be the last 30 minutes there. She colored while we waited. They came to get her at 11 and I walked with her to the bubble wall. The bubble wall is where you say goodbye. Haleigh gave me a kiss and said "bye mama, I'm going to sleep see you after I wake up" smiles and was gone. It was the first time she's gone with out tears. I wanted to cry so bad, I'm sad that surgery is normal and that in her little life being put to sleep after being rolled into a room full of strangers is ok. On the other hand I'm glad she wasn't scared.

Dr Grant said things went really well. She had a lot of scar tissue from where the expander was before so he cleaned that up and couldn't put the expander exactly where it was before. Her port is not behind her ear it's in her cheek. But I think it's going to go better this time, it looks better and less painful. We all have very high hopes.

Haleigh was given Morphine as soon as she was out if surgery, that was the only time she needed anything other that Motrin. She slept that night from 10pm until 7am without waking up for pain meds. She got some Motrin at 730, showered, ate and was ready to go home. We left the hospital at 10. Traffics was really bad and we didn't get home until 4:30. Yes 6 and a half hours. It should have taken 4.

At home she has only needed Motrin for pain. She has slept a lot, and isn't eating wonderfully but is doing great. We go back for post op and our first fill in 3 weeks.

Happy Mother's Day

We had a great day

Another Child in Heaven

It's happened again. A Family has lost their child. A child that had the Same skin condition that Haleigh has. Sadly the child developed melanoma and died of cancer. I'm so sadden by this and can't help but to think of Haleigh.

I think I'm doing things right. We use sun screen made from Zinc Oxide and apply it everyday. Even in the winter her face has sunscreen on it and she smells of summer days. It's become her natural sent I believe. I can't keep her from the sum. I can't cover her face its always exposed to the elements. And there is nothing I can so about it.

I've always been on the line about removal and I know more than ever that I'm doing it right by removing but I wish it wasn't taking so long. I wish I could have made the first expander go better. Instead we start over. We go again and try to do what's best for her. To make choices for her that we hope if she understood she would make for herself.

So tonight I pray for the family that lot their child. And I hold my closer and pray that I don't loose her for the same reason.