A few things have happened this weekend. Ashley decided to unknowingly start our first family "lets take turns being sick" weekend! Ashley and I got it the worst, Nick the least and Haleys was delayed. We tried to be careful and keep Haley from getting it, but a whole 24 hours after everyone else felt better, Haley wakes up feeling ill. Of course on the day of her doctors appointment.
We rescheduled for February 14th. And her doctor called us so we did the chatting part over the phone. We are very blessed to have we such a great doctor. This is all new territory for us and him, but he is so willing to listen, learn, research, consult other doctors and admit when he just doesnt know.

I have been searching for a portable oxygen concentrator for months. The tanks haley has to drag around are just ridiculous for a 5 year old. So I woke up at 3 am one day and there was an infomercial on tv about one. It was the weirdest thing, so anyway I called and we decided it was too heavy for her and wouldn't work for us. But the lady gave me the names of a couple others that were smaller. One of them looks like it will work super well. It is about 5 lbs, has a 3 hr battery life, but it has an adapter for the house and for the car. We are looking into seeing if insurance will pay for any of it. I doubt it. We will most likely be having a fundraiser. When the spokesperson called me about them he said that he had a hard time finding a dealer that was willing to work with us because haley was a child and they didnt feel comfortable with that. But he found one that said he would be happy to work with us. I dont quite understand why they feel uncomfortable. They are selling a product and we are buying it, our doctor is involved and we have a valid Rx. I emailed the spokesman and asked him, so i will update on his answer if/ when I get one.

I got a call from the school this past week saying Haley had a bloody nose. The nurse said they got it stopped and she was fine, but just wanted to let me know. I understand they did surgery to fix it but I still get that horrible feeling when I hear or see the bloody noses. Haley came home that day and said that she didnt know until her teacher pointed it out. Haley kept saying, " she was like oh my goodness, oh my goodness." Haley is funny.
So Sunday night ashley had a bad dream, kept coming in our room. after awhile of trying to put her back I gave in and let her sleep with us. I was tired and there will be a day she wont need or want to stay in our bed. Finally I get to sleep, when haley shows up at the door with a handful of blood. Poor girl. It bled for a long time, not pouring out like it used to but it was definitely a steady flow. I plugged it once, she bled through the plug. We held it closed for a bit longer and tried again. It seemed to hold better. We tried to use her mask for O2. Which she hates. Plus the big plug shoved in her nose didnt help any. She spent the rest of the night sleeping next to my bed, with her oxygen sitting on her pillow turned way up just pointed toward her face. This was around 430 am. around 7 am we wake up and take the plug out. I wont go into detail but lets just say it was still bleeding. In went another plug until about 9 then all was well. I wasnt too worried about it because it never came out her eyes or down her throat, when that happens I will worry a bit more.

There is a good difference in her energy level, well its hard to explain. It is almost like she is using energy that she doesnt really have, like credit energy. She is overtired but can still have a typical energy level. She is in a good mood usually in the morning then as the day goes on she cant handle things as well and has more of an attitude....overtired. The other day we went for a walk, Haley on her scooter. we made it to the end of the street before she started to get tired, then around the block we stopped every other house to rest.

 I love my Haley and I dont really like these heart defects or pulmonary hypertension. But I do know God is in control and he knows what he is doing and it is good.  Even though I can only see a little glimpse of the picture, I trust Him.