8 days

In 8 days we will be headed to Birmingham for surgery to remove a good bit of Haleigh's Nevus and the expander.

I took her today for her pre op appointment and 5yr check up. She's 37 inches tall and weighs 36.9 pounds. She is very healthy and we renewed her yearly referral to plastics. Her dr is very happy with the way her expanded skin looks. I have to say I am as well. No openings, no strech marks. It just looks perfect and healthy. 

I am excited and nervous and scared. I believe Haleigh is having the same feelings. I wish I could do this for her. We will be doing a small fill today. 10-15cc sounds good. 

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. 

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.

Drain Free

Haleigh is now tube and drain free!! It wasn't bad taking it out, no crying, not scared no pain.

I still haven't talked to the doctor I called left 2 messages yesterday and 3 today. All voice mails. I'm not even sure they have gotten them. Her drain was still putting out about half a ml. A day. But I had no choice tonight while taking her bandaid off I cut the stitch. So I told Haleigh that it was time to take her tube off. She was excited and I told her to pull. She got this look on her Face saying "me? Really" I pulled just a little and then she pulled it the rest of the way out. When it was out she of course wanted a bandaid but she said "ah much better". Poor baby must have been uncomfortable.

Quick update on Stitches

I wanted to let everyone know that last Tuesday, Haleigh's stitches in her chin were removed. She did really well and all is healing very nice. We were able to take her to the splash pad today and to the beach Monday. We had been meaning to keep the stitches dry except for her baths, so this was a real treat for her, she is part fish i think!!

Hospital follow up

I took Haleigh to the doctor yesterday, to get her primary care doctor's take on the test and stuff that went on with the hospital last weekend. Her doctor has always bee very supportive and helping me make choices in Haleigh's care, so I hold his opinion high. He said he does not think Haleigh had a seizure at all, he believes it was the medicine they put in her IV to make her sleep.

Now at the hospital they told me they had not given her anything before her episode, her medical records say the episode started less then 15 seconds after the needle went into the IV and before all the medicine was in. And that it lasted 14 seconds. He said if she had a seizure the EEG would have showed what part of the brain the seizures was in. The EEG was normal, he told us to take comfort in that, and the fact that Haleigh is back to normal, she didn't go with out oxygen for 14 seconds or we would know it.

Haleigh's throat is still red, but no scratches and no tears, that was also great news. We don't need a follow up with ENT.

He said he was impressed I took her to the hospital so quickly, as I hate emergency rooms and the way they are over used for things that can be taken care of in the office, such as ear infections and low grade fevers in other wise healthy children, he was glad I did because it was truly a life threatening event. That made me proud as a mom who knew what to do and did it right and scared that my child had a life threatening event at 2 years old.

Other good news was that we should not worry about her other surgeries in Atlanta, the medicine that she reacted to us a quick acting, short lasting medicine and is not used for long surgeries, for that they use gas. I knew they used gas but I was not sure if the other medicine played a role somewhere in other surgeries, so I just have to inform others of this reaction.

Her blood pressure was perfect at the doctors office and it was high due to the at least on her body from everything from choking to surgery and the reaction, it all together took its toll.

I just hope we don't have to ever do anything like that ever again.

A Little Traumatized

I believe Haleigh is a little traumatized from her surgery. I was really hoping she was still young enough to forget about it almost as soon as it was over, we were not so lucky!

I want to say Haleigh is doing very well from a physical stand point.

When we skyped with Dr. C last week he said Haleigh look great, and that since she was leaving the glue alone, we could put triple antibiotic cream on it and that would loosen the glue so it would flake off! We have been wanting the glue to fall off so I was excited. We had not out any thing except sun screen on her face and I did that while she was doing other things too, so she was not paying att to me anyway.

When I first tried to put the cream on Haleigh's face she had a fit! Kicking and screaming and yelling for her daddy, for her may may! Help help she was saying! I felt so so bad, Madalyn held her hand and I quickly put the cream on her. I felt so bad for her, I decided I would wait for her to be asleep before I put any other cream on her.

Then saturday came and I had not choice but to use sunscreen on her. Landon held her hand as she cried. He is just 4 so that made me wanna cry that she wanted her littlest big brother to hold her hand.

She does not want anyone to wash her face or bathe her, she dosent want is to wipe her if she gets dirty, she said she'll do it her self. But ya know she can't always do it good enough and when I have to step in age cries for someone anyone to hold her little hand.

She on the other hand does not want mama to hold her hand. Mama is the one putting on all the creams and doing all the washing and wiping, so she will not hold my hands.

I was a little sad when she would not let daddy put on the sunscreen and hold mama's hands but then I realized she just trust me to handle her face and everyone else is just for hands!

I tried to just look and see how much of the glue was peeling off today and that was as bad as trying the sunscreen so I am just waiting for her to sleep.

I love her so much and I just wish she could have started earlier and was finnished before she learned how to remember anything longer than a day or two!

Please continue to pray for Haleigh and our family during this time. We know that God will use this for our good and His glory.

As long as it's healthy.

I bet you have heard almost every pregnant woman and maybe even some expectant fathers say that they do not care if they have a boy or a girl, as long as the baby is healthy that is all that matters to them.

So my question is what is the difference, in wanting a boy, a girl, and healthy? No one wants to say they want a girl because if then they have a boy people will say aw sorry you didn't get what you wanted. So goes for if you wanted a boy. But what if you say all you want is a healthy baby?

What if your baby is not healthy? What then all you wanted was healthy and you didn't get it, so do you love your baby less because they are not healthy? What do you say to a new parent who for 8 months have said all they want is a healthy baby? Then they have a baby who is not completely healthy?

We didn't care if Haleigh was a boy or girl and yes as every parent we prayed she would be healthy. But I never said all I wanted was for her to be healthy, because really being perfectly healthy is not all that important. I wanted nothing more than a child to bring into our home and love. That is all that mattered to me. I think a lot of parents would agree with me on that.

I think people that have children that never have a health problem, will never truly understand how much some other parents go through. Having had children that were and still are healthy from the moment of birth and then the other side too. I can say as different as parenting a sick child is your love for them is the same and your protection for them more!