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.

My baby

I am having a really hard day. I hate this so much. I never wanted to do expanders. They scare me. And now that we have them. I hate it. My baby is hating it. She was so ready for her bubble she wants he nevus gone. At 4 she knows what she wants. She just didn't understand what it was going to take. My heart brakes for her it really does. I worry about her. How her life is going to go. I know we are doing the right thing with removal but it being right doesn't make it easy. I don't want my baby hurt any more. I just want her to be able to be a normal girl and for her not to worry.

She told me tonight she hurt. I asked her if it hurt really bad or a little she said really bad. I gave her some meds. And she is feeling better. She deserves so much better.

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.

From bad to Worst

Today was the day. We talked to Haleigh last night and this morning about her fill today. She was scared but ok. Then came the "magic cream" ( that nubs) and she cried. Then came the gloves and she fell apart. So we decided to wait until she was asleep and do it.

She falls asleep, I put on the cream and wait. I get everything ready and as I go to start she wakes up. We hold her down and she cried so hard. It was so bad much worse than last week at the dr office. Haleigh was screaming, Jason was yelling at me to hurry up and I was trying and crying so I only got in 20cc. Better than no fill at all I guess, but tomorrow I will be calling the head of surgery at children's hospital to see if his office will help with fills. If not we will go to Birmingham every week. Jason refuses to have them done at home every again. Home is a safe place. Not a place to be scared. :-(

First Fill

We traveled in the rain today to learn to do fills for Haleigh's expander. And to make sure she is healing good from surgery 3 weeks ago.

Good news she is healing perfectly. Thank goodness. She however didn't like the fill. She didn't want the nurse putting on the "magic cream" (that numbs the skin) on her. Then she wanted me to hold her. Then she just wanted her daddy. (Who was at home) she was not in any pain because we were still filling it when she stopped crying. So I believe she was just scared.

The doctor gave me all the things I need to do the fills at home every wed. If we have any problems I can call him and they will see me on Thursday. But there is also 2 drs here that will help me if I need it. I think I am going to be able to do this at home though. It's not hard. The actual hard part is going to be keeping Haleigh still so I don't poke her skin and I get the port everytime.

I have enough supplies to do 6 fills the. He wants to see her in the office on March 21st to see how we are coming with the expander and how much we've gotten in it.

The expander will hold 300cc. We are using a 30cc plunder so and there is 30 cc already in there so I'm hoping in 8-9 weeks we will be done!! I am so excited to use that word!

Learning to fill

Tomorrow morning we will be leaving our house at 730am to head to Birmingham. Haleigh will have her follow up appointment. And I will learn how to do her fills. This is the scariest part for me. Even though they will be giving me numbing cream I'm still going to be injecting my child once a week for 3ish months. I'm trying to look at it as 12 times. In the span of a whole life time 12 is a very small number of weeks right, I know I can do this. I just worry on how Haleigh is going to do with it all. I wish she was younger and didn't understand, the. Maybe I could do them while she slept of she could be distracted. But as an active 4 year old there will be no distraction big enough. We will just have to talk her through it.

So safe travel prayers, and strength for me! I will update when we are home!

Follow up

Haleigh is doing really well, her fever was from a virus that ran through everyone in our house. But everyone is better now.

Tomorrow is 3 weeks from surgery and Haleigh has had no problems. And the expander and skin look awesome. We go for her follow up and for our teaching of the fills on Thursday. I'm really nervous about the fills. I know I can do it. I'm just worried about Haleigh and how she is going to do. My mom is going with me so someone can hold Haleigh's hand. She won't even let me put a band aid on get with out someone holding her hand so it's very much needed.

Our next step is keeping her well through fills and then removal surgery in April. It's going by so fast!