Finally AN UPDATE!!!

Well its been awhile.....

The past two years have been filled with change. Little of it having to do with Haleys health, thankfully. Nick and I got divorced last October. Im not going to get in to all that on here, but i thought its important to disclose. Both girls are doing well considering the changes that go along with divorce. Haley is now in 4th grade, Ashley is in 1st!! They grow so fast! As every parent says, I wish I could slow it down. I love them so much, they are growing into young ladies!

Haley has been doing extremely well. She is starting to become tired even more easily then before. She is still able to run jump swim play.... just cant go as long as the other kids.
Her nose bleeds have been coming back. At the end of September we were back in the hospital for a few days due to a bleed. She went in to get scoped by the ENT, to see if they could find where the bleeding is coming from. They didnt find much, but cauterized with silver nitrate inside her nose. So she didn't have the huge jelly plug like the last nasal scope she had done. She only had some black stain under her nose for a few days. She is such a trooper, she still went to school and wasnt even worried about it.

We did have some blood tests run by the hematologist, to check for bleeding disorders. She was cleared for the obvious ones. She is getting tested for thylasemia again. Nick is a carrier, she was tested when she was younger, test came back negative. Her hematologist said that the test needs to be done by someone who is trained in thylasemia, bc the results can be miss read or something can be easily missed. So we are testing again and getting Ashley tested as well. The doc says it can lay dormant for years, then pop up later.

There hasnt been much more then that in the past two years. She is still taking the same meds. We will be discussing a catheter in the nearish future as well as getting her tonsils out with her doc.
Her tonsils have been swollen for awhile, we are looking to get them out while she is healthy, because of the risk of putting her under. If we wait until its urgent, it will be more risky.
The doctor says that should be after the winter season. He said viruses can hide quietly in there and once we start messing with her tonsils, it can wake the viruses up and Haley can become very sick after surgery if we do it during flu season. It will most likely be mid next year.

I found a notebook I wrote letters for Haley in while we were going through the thick of things. I was reading it laughing and crying. I was amazed how we handled everything. I may go through in the next couple weeks and share some of them.

Thank you for all your prayers. Haley is a miracle!

Email from doc

Just got the official report from the cath. Her doc added an email with it. Saying he is not as encouraged as he had hoped with the results and sending it to the specialists to see what their take is. He says we might want to start seriously thinking about starting the new med in the next couple weeks.
The new med makes me a bit nervous, it has way more side effects, and is kind of a nothing else is working last resort med. it has different strengths though, we shall see which one they suggest starting with.
Sometimes I just don't understand, she seems so normal. But really she's lived like this for so long her body has compensated and gotten used to working like this. It's just unreal to see her acting normal, fully knowing tomorrow could flip our world around again. I'm sad for her, she's just a babe, who someday, sooner then we want, will no longer be able to run and dance and sing. I am so thankful she is able now and for everyday she's here regardless of her activity level, we will make the best of whatever comes our way.
I am so thankful for her cardiologist. He is a great person, he understands how much we understand and want to know, he is very straight with us. I love it, I'm not into hiding how serious this all is, or sugar coating. It's extremely hard to hear and discuss but I know it has helped me a ton to know more.

God help us through this, give us that wisdom that you have always provided. Thank you for everything you've given us through this stupid disease. Carry my girls.
Can I get an AMEN?

We have so much love for all of you who have been with us. Thank you.

Post Surgery Cath

I look back at these last 2 years and it seems unreal that this is what we have been through. Im sorry I haven't updated in awhile. I have Internet issues and frankly have been to brain lazy to write anything. So I am at work 30 minutes early to do this. :-)

So we had her cath last week. She did amazing as expected! The more often we send her back to the OR  the more reluctant she is to go back. But she did it. The doc said it took her awhile to get back there because they let her walk, so she had to stop at every little thing and ask questions. That's our Haley.

We haven't gotten any final results yet, but the doc said he was pleased. Her heart function looks good. The pulmonary pressures are higher then the systemic, but that's PH for ya. She is still reacting to the O2 and nitric. As of now there are no plans to add any meds or change anything. Her cardiologist still needs to calculate all the numbers and write up his report.
So as of now we are hanging out, she is doing well.

She starts 2nd grade next week. SO Excited!!
I will try my best to update more often. Thanks everyone for lovin on us throughout all of this.

hows Haley?

Haley is doing great! This past monday she went back to school..... half day..... with me there. We practiced what we were going to tell the class. We had a really good explination of everything. Once we got up infront of the class, the teacher got the classes attention for us. All those little faces looking at me, I totally forgot everything I was going to say. It was terrible. So after I was done pulling out all that I could remember, her teacher had to tell the class everything I forgot.
So she is back at school, rolling around her oxygen. We bring her pulse ox so the nurse can check it when she goes in for afternoon meds. Her levels have been ok, between 91 and 94.
We saw the surgeon to look at her scar last week, we have another appt in 3 weeks because he thought it was alittle too pink. We think that its fine, thats just how she scars. It is healing really well. There are only 3 spots on the big scar that still have scabs and the drain tube incision is still scabbed.
We see the cardiologist on tuesday. This will hopefully be an informative appointment. We should be scheduling a catheter in the next month or so. That will be interesting.
While Haley was having to stay home and even now she is still inside most of the time, she is really into original nintendo mario brothers! Makes me so proud! Our neighbors let us borrow their Wii, she is amazing at the mario racing game. She has crazy control over the steering. She races against the game and gets first place 75% of the time.
Ok thank you for all your prayers!

Home

Doctors estimated Haley to be in  the hospital 7 to 10 days, she was released yesterday which was day 6! Thats just Haley, you just never know with her. She is doing well. She has a very high pain tolerance, which is good and bad. She wants to ride her bike and carry Ashley around. She is on oxygen which isnt too bad because she was on it 24/7 before, but we have to get used to walking around with that tube following Haley. We have a pulse ox finally. Her O2 is still low. as long as she is still she is at 97 or 98 but as soon as she starts walking around she can go down into the 80's. We have a follow up appt with the surgeon on the 29th of march, then with the cardiologist april 9th.
Ashley did really well while we were gone. She was so happy to see Haley home. I tool ashley to grandmas this morning and left Haley at home with dad, Ashley asked where Haley was, then said Oh I love Haley so much. It was really sweet. I wanted to pull over and squeeze her.