Happy (belated) Halloween!

It was a busy week last week with our horrible H1N1 visitor. Finally everyone is back to normal and back to school! I had a terrible time getting myself AND the kids going yesterday, though. We had kind of a nice break from the morning rush last week.

Thankfully the kids were all feeling better by Halloween. The night before, we went to Trunk or Treat at one of the hospitals here. The kids had a blast, even though it was cold. A kind of cold that we are just not used to!

Here are a coulpe of pics from that night:


Hayleigh was a Pediatric Endocrinologist (It says so on her name tag!) Allie was an angel (but only for Halloween), Kailyn was a cat (AGAIN) and Jordan was the freaky looking guy from the Saw movies. (Hate that mask!)


Paige (Cousin), Jordan, Kailyn, Allie and Hayleigh

On Halloween night, Jordan went Trick or Treating with his friend and slept over. Unforunately he did not "have time" for me to take pictures. I didn't really mind. I wanted to see that mask as little as possible. ;)

Here are the girls:









The girls and I went Trick or Treating around the neighborhood. It was pretty cold (we aren't used to cold on Halloween!) so I bundled them up. But they didn't want to cover their costumes so they each had 3 long sleeved shirts under their costume as well as thick cotton tights, thick socks, leggings and gloves. I made sure they stayed warm. And they did!

Our Trick or Treat time was from 5:30-7:30. I was all ready to go the full 2 hours, but the girls tired out after only one. It was ok. Their buckets were full anyway.








So, that was our Halloween. We all had a lot of fun and now we have WAY too much candy. I'm not sure what to do with it all. I need to have someone hide it from ME. I'm having more of an issue staying out of it than the kids are.

I hope everyone had a Happy Halloween! Now on to Thanksgiving!

In other news....

Since I have only had Hayleigh's current health scare on my mind lately (and who wouldn't?) it's pretty much all I have been blogging about. So now with the good news, I can move on to other things. Some much more happy, some not so much.

Last Wednesday was my birthday. I woke up to beautiful cards made by the kids. Then later on that evening my mother in law brought me 4 bunches of flowers. One from each of the kids. Then her and my father in law bought me dinner. Yummy Chinese food! After that I got a pumpkin spice shake from Culver's. So, aside from the fact that I am now 36, it was a pretty good day. lol I wish Scott could have been here, though.

Yesterday was our anniversary. Scott and I have been married 14 years. FOURTEEN! I can't believe that much time has passed. It's been a wonderful 14 years! We have been through a lot, and we have made it this far. I wouldn't trade one second of it for anything. I am looking forward to many more years together. Again, I wish he could have been here. But on November 4th he'll be coming to visit for a few days so we'll make up for it then.

Thursday I got a call from Jordan's school nurse. He was sick and had all the symptoms of the flu. So she said she was sending everyone home who had those symptoms. I started to panic because I was in Chicago at the time and of course Scott's in Phoenix so I wasn't sure what to do. Luckily my brother in law was home so he was able to pick him up.

Yesterday he was getting worse. He had a temp of 102. Not too bad, but still there. So I called his pediatrician. They wanted to see him so I took him in. He tested positive for Influenza A so she said to just assume it's H1N1. She put him on Tamiflu and she also put Hayleigh on it because she's high risk due to her underlying health issues. So far she hasn't had any flu symptoms although she is pretty tired today and didn't feel like going to her soccer game (which is very unlike her) I'll be keeping a close eye on her. If she gets this, it could be really bad.

Allie was pretty restless last night and started coughing. Then she woke up with a fever of 101.9. She's been sleeping pretty much all day while I wait for a call back from the on call nurse. She has all the symptoms that Jordan has. So I'm pretty sure she has the same thing.

So far, knock on wood, Kailyn seems fine. But I do know that this hits fast. So although she is fine now, things could change in just a few hours.

So, that's about it for now. I really want to thank everyone for your prayers over the past couple of weeks. I know all of your prayers really helped. I am so glad to have some new readers here too! When I get a second to sit down, I will definitely check out your blogs as well.

Thanks for stopping by!

Appointment with the Neurosurgeon was AWESOME!

Never thought I'd say that! But it was.

We met with the Neurosurgeon yesterday who was really nice and tried to put us at ease. We talked about Hayleigh's health history and went over her meds, surgeries, etc. He then took the copy of her MRA into another room and said he'd be back soon.

After about 15 really long minutes (and about a dozen texts from Scott who was worried sick in Phoenix) the dr came back. At first he walked in with the images from her MRA on his laptop screen. He didn't say a word. I thought for sure he had found something. I started to feel sick.

Then his face brightened up and he said "Well, after going over these images I have found nothing out of the ordinary! And just to be sure, I had the Chief of Pediatric Neurosurgery go over them too and he agreed. Everything looks perfectly normal."

Normal.

NORMAL!!!!!

I started to cry and I wanted to hug this guy, but I figured that would be weird.

He sat with us a while longer and explained some things. I asked why the original report said that abnormalities were found. He said the radiologist thought he had found an Aneurysm, not an AVM (I was not told about this when I found out the news 2 weeks ago!) But after looking things over carefully, there was nothing to be found.

The good news is (besides nothing being found) that once they check for a Brain AVM, and they don't find one, we will never have to worry about it again. Brain AVM's are something people are going to be born with if they have one. It won't just show up one day out of the blue (unlike AVM's in other places).

We do still have to watch for bleeding on the brain. There is a chance that can happen. But for now, everything looks great and I am just going to focus on the happy news.

Hayleigh and I celebrated yesterday by going out to lunch. We were very disappointed to find out her favorite restaurant in Chicago Da Luciano's wasn't open until 4 (it was only 2) They have the BEST Gluten Free pizza! But we went for her 2nd favorite...Claim Jumper. We had a great lunch and afterward we stopped by Starbucks. Hot Chocolate for her, Peppermint White Chocolate Mocha for me. Then we drove home through the pouring rain while she watched Monsters vs. Aliens in the back seat.

Our scary, worrisome day turned into a great afternoon with just her and I and I loved every minute of it.

Thank you all so much for your thoughts and prayers over the past 2 weeks. It means a lot to our family.

Prayers definitely do work! Hayleigh is proof of that.

New Appointment

The pediatrician's office called yesterday to let me know they moved the appointment. They didn't just move it up, but they moved it to a new location, a new dr.

She won't be seeing a Neurologist here in town on November 3rd. She'll be seeing a Neurosurgeon at Children's Memorial in Chicago next week on the 22nd.

That makes me a little more nervous although I'm not really sure why.

All I can do now is wait and pray.

November 3rd

That's the soonest available appointment with the Neurologist.

One the one hand I'm thinking..."Well, maybe they can wait 3 weeks because they don't think it's as urgent as the pediatrician made it seem."

One the other hand I'm wondering if the Neuro even read the chart yet. The referral the pediatrician sent over said she needed to be seen STAT and the pediatrician is not too happy about the appointment date. So now, I am waiting on a call back from her to see what can be done (if anything).

I don't know how I will get through the next 3 weeks if the appointment doesn't change. I guess I'll just continue to do what I am doing. Praying as hard as I can that everything is going to be ok.

Hayleigh's History

I just thought I would post a little background info on Hayleigh. I was asked by a couple of people how I found out she had HHT so I thought I'd post her story here. At one time I had a website with all of her info and info on HHT, but it's gone now. So I'll post the info here.

When Hayleigh was 4 months old, she had her first asthma episode. I took her to the hospital where she received a breathing treatment and had oxygen levels in the low 80's. The hospital didn't think much of her numbers saying the equipment wasn't reading right or it wasn't made for babies so it wasn't accurate. I didn't think much of it either at the time. Being new to all of that I figured it was ok and assumed they knew what they were doing. In the next year and a half she had quite a few more asthma episodes and every time, she was still getting readings in the low 80's and every time, the hospital blew it off. (Unfortunately we HAD to use this hospital because of our insurance at the time)


When she was 22 months old, she was more sick than I had ever seen her. She was lethergic and pale. She wasn't eating or drinking. She didn't even have the energy to cry much. I made her an appointment with our pediatrician for later that day but the more I watched her, the more I knew she had to be seen right then.


Scott's job had just changed insurance companies so we were able to take her to any hospital in town. I took her to the closest one. The waiting room in the ER was packed. I thought we'd never get in there. My poor girl was still very lethargic and the only way she was comfortable was when I was holding her upright. If I laid her down in my arms, she would cry a very weak cry. So I held her for 4 hours waiting until we were finally called in for Triage.


Once the nurse hooked up the Pulse-Oximeter to her finger, it read 74%. I'll never forget seeing that number. The nurse thought for sure that couldn't be right so she put another probe on her. She got the same reading. She told me to wait right there and she ran to get a dr. The next few minutes were all a blur. The dr took her from me, took her into a room and the room filled with drs and nurses. They started an IV, took x-rays right there in the room and told me she needed to be transported by ambulance to the children's hospital. She had pneumonia and RSV.


I was taken into another room so I could call Scott. I remember walking back out into the hallway and losing it. A sweet older lady was out there waiting. Her husband was in another room being examined. She hugged me and prayed with me and told me that everything would be ok. I needed that right then.


Scott came and I rode in the ambulance with Hayleigh. He followed closely behind.


We got the the children's hospital where it was confirmed that she had pneumonia (in addition to RSV) She was admitted and we spent the next week waiting for her to improve. She never did.


She was on high doses of antibiotics and it wasn't helping the "pneumonia" clear up. She had percussion therapy where they would pound her chest lightly with this little rubber tool to clear the lungs. She was having that 3 times a day and it never helped. She was on 100% oxygen this whole time and her oxygen level never went above the low 80's the entire time.


Her red blood cell count was triple what it should have been and they couldn't figure out why. They did a bronchoscopy and they suctioned out her lungs. It didn't help. They did the sweat test checking her for Cystic Fibrosis. It was negative (thank goodness) But they STILL couldn't not figure out why she wasn't improving. They were talking of sending her to Lucile Packard Children's Hospital in Stanford. But first, they wanted to try one more thing.


Finally they called in a Cardiologist who ordered a CT Scan. Once they did the scan, he thought he had found the problem. So, he ordered another one to be done the next day with contrast.


That night, while she was sleeping, I prayed harder than I have ever prayed before. I didn't pray for her to miraculously get better that night, although I would have been more than happy with that. I just simply prayed that the Dr would find whatever it is that was making her so sick, and fix it. After I prayed, I felt positive for the first time since this all started. I knew that God had listened.


The next day came the CT. After it was over, the cardiologist came in our room looking happy. They found the problem. And it could be fixed.


He told me that she had a pretty rare problem in her right lung. She had a large Pulmonary Arteriovenous Malformation and it was causing her oxygen to be dangerously low. He sat with me for a long time explaining what it was, what it was doing to her and how they were going to fix it. (He also said had I not brought in her in when I did, she might not have been here the next day. The scariest words I will ever hear) The next day she was scheduled for a Cardiac Catheterization and an Embolization. (The Cardiac Cath in this case did not stop at her heart. It had to go through her heart and into her lung)


The next day came and it was time for the catheterization. They gave her something to relax her so they could take her in the room without me going in with her. We got to walk her down, and hand her over.. That was one of the hardest things I have ever had to do. Scott and I went back to the room and waited for what seemed like forever. (It was actually about 4-5 hours) We finally got to go down to recovery. She was not a happy girl but for the first time I noticed, her lips were pink. I had always thought that grayish-blue color was just her. That's how she had always been.


After spending time in recovery we were taken to the Cardiac Care Unit. There she was told she could eat whatever she wanted. She wanted pizza! It had been days since she had an appetite and since she had had so much energy! We ordered her a pizza and she ate quite a bit!


The next day, she got to come home. It was SO nice to be home and it was even nicer to see how much more energy she had. We always thought she was just a quiet girl. But she changed! And it was good. :)


We got a call from her cardiologist a couple of days after her release saying that he wanted to refer us to a Geneticist. He said that usually, Pulmonary AVM's just don't happen without a cause. So he wanted them to look into it further to see if she had a genetic condition that we didn't yet know about.


We got the appointment pretty quickly. We spent over 2 hours with the geneticist that day. They looked Hayleigh over from head to toe, found some telangiectasias, took pictures and documented everything. I was told about this genetic condition called Hereditary Hemorrhagic Telangiectasia (HHT). She told me at the time, there was no way of testing any other way than a clinical diagnoses. And from what they have seen, Hayleigh definitely had it. (About a year and a half later, they finally came out with DNA testing and with that they did manage to find Hayleigh's mutated gene for HHT)

In 2005 it was found that her Pulmonary AVM had gotten bigger. She had another Cardiac Catheterization to embolize it. This time they used an Amplatzer Vascular Plug.

That same year, she was diagnosed with Type 1 Diabetes.

In 2007 it was thought that once again her PAVM had grown. They did another Cardiac Catheterization but once they were in there found that everything was still closed off with the exception of a few tiny ones that they couldn't get to (but were not causing immediate harm) We are keeping an eye on those.

That same year, she was diagnosed with Celiac Disease.

Which brings us to now. The reason for her MRA was #1. She has frequent headaches and #2 given her history of HHT and the fact that it can cause AVM's in numerous organs, they wanted to take a look and check for any Brain AVM's.

I am still waiting on a call from the Neurologist. I did talk to the receptionist yesteday who said the dr needs to review her report before they can call me for an appointment. I am praying that he sees things differently and that this isn't as bad as I am worried it is (and as bad as her pediatrician made it sound).

I am very grateful to all of you for your continued prayers. Please keep them coming. I will post an update as soon as I have one.

Fast results. Not always a good thing.

Hayleigh had her MRA on Friday. We got to the hospital and settled into a room with the sweetest nurse that we could have possibly gotten. Waiting for Hayleigh on her bed was a small pillow with a monkey pillowcase. She is obsessed with monkeys lately so this made her very happy.

She changed into her hospital attire and the nurse checked her vitals. Everything was perfect so she was ready to go.

Next we got to meet the Anesthesiologist. Again, we could not have asked for a nicer one. This isn't a children's hospital and the pediatric floor is pretty tiny so I'm not sure how often she gets to work with kids. But she was SO nice and comforting to Hayleigh who was, by then, very nervous. The anesthesiologist sat on the bed with Hayleigh, letting her know everything she was going to to. Hayleigh cried (FYI she was diagnosed with Anxiety Disorder last week). She was starting to panic a bit. The anesthesiologist calmed her down and listened to how Hayleigh wanted to do things. Hayleigh wanted to be asleep when the IV was put in and the anesthesiologist agreed. That helped her a lot. The anesthesiologist also ordered Versed to calm Hayleigh a bit.

She spent the next hour texting her dad and watching TV. We chatted a bit, but she seemed too nervous to talk. The hour passed quickly and they came in to get her. I got to walk down with her while she was still awake (although starting to relax from the Versed). I had to answer a few questions then I was told it would be better if I waited upstairs in her room. Her sweet nurse stayed with her the whole time. I left and as always when my baby is going to be sedated, I cried.

I went back to the room and waited. After about an hour and a half I was told she was in recovery and would be up soon. About 2 hours later they brought her to the room. The nurse told me she'd be pretty emotional from the Versed and from being sedated. She was right. Hayleigh cried. A lot.

She finally started to feel better when Scott called me. He said our pediatrician called his phone and said she wanted to talk to me about the results. (Not sure why she called him) I stepped out into the hall and called her back immediately, assuming that she had results that quick because there was nothing to be found.

I was wrong.

She read the report to me. I could barely listen. All I remember was "Abnormalities were found....", "Possible AVM given her history of HHT...", "I'm sending a referral to a Neurosurgeon.." (or neurologist, I honestly can't remember which one she said). "I want them to get you in for an appointment STAT." Then she asked if I had any questions. I could barely think. I could barely talk. How was I supposed to ask questions? Of course now that I have had time to calm down, I do have questions. LOTS of questions. But right then, my mind stopped working so I told her no, I didn't have any questions.

Hayleigh's sweet nurse came out to see if I was ok. I tried explaining to her that we got the results already and they weren't good, but it wouldn't come out. I told her I had to step out. I didn't want Hayleigh to see me upset. She took me to another room and helped me calm down enough to tell her what happened. She talked to me for a minute and said to take all the time I needed in that room and she stepped out. Another nurse came in with something to drink and a warm washcloth. (This hospital staff is above and beyond. They were just as sweet when Allie was in the hospital a few months ago). I called Scott and his immediate thought was that he should come home. I told him to wait until we have the appointment to see what goes on. No sense in rushing here now when we have no idea, really, what is going to happen.

So, that's the news. Not the results I was hoping for, of course. I honestly thought nothing would be found. But I was wrong.

I haven't slept much in the past 2 days. I cry every time I get a second alone. Hayleigh doesn't know anything more than she has to see another Dr about her results. I'll wait and see what happens before I tell her anything. She has enough to worry about already.

Thanks to those of you who said prayers. It really means a lot. Please keep them coming. She really needs them.