Natalie is doing well with school and still loves going.  When we ask her if she is ready to go to school in the mornings, she just smiles and laughs at us.  Sometimes she comes off the bus completely worn out and asleep.

We are preparing for a busy summer of family events and time together, so we are hoping that the warmer weather will help Natalie get over the pneumonia.

Natalie is doing ok so far at home, but she is on oxygen and we are keeping an eye on her vitals, mostly her oxygen saturation readings.  She is coughing a lot and clearing her lungs some, but it seems like it takes forever for her to get feeling better.

We would like to thank everyone for their prayers and emails of support for us, not only through this site, but my (elliott’s) other sites as well.  The blogging community is great!

Natalie is sleeping a lot now, but who could blame her, I probably would sleep lots too if I had pneumonia.

I will keep everyone updated as to how she is again with another post this weekend hopefully.

However, as things can change on a moments notice with a special needs child, today things changed.

Natalie came home from school asleep yesterday (Friday) and we didn’t think much of it as sometimes it wears her out and she is just wiped out and tired.  But this morning, she wouldn’t wake up.  And of course, I was out of town at a Fire Department conference to make matters a little more stressful.  All I can say is I am glad that there were no police running radar and my car held together to get home!

Natalie was unresponsive this morning (Saturday) and after checking with the doctors, we determined that we needed to take her to the hospital.  Usually we can wake her up from one of her deep sleeps, but not this morning.  Her oxygen saturations were really low, so we called an ambulance to transport her because of the need for oxygen and monitoring.  Her breathing was labored and she just wouldn’t respond to anything.

Our local heroes from Burlington Fire/EMS responded quickly and they were even concerned as the guys that responded had treated Natalie before.  It was decided that the best route to take would be to transport her via helicopter to Cincinnati Children’s Hospital for evaluation.

After several hours in the emergency room, we were moved to a private room on the floor.  It was rather quickly determined that Natalie wasn’t breathing very well, so they sent her to radiology for a head CT.  After that, up to ICU we went.

We still aren’t sure what is going on with her and why she isn’t responsive yet.  From what we can tell, all of her test results so far are not raising any red flags.

I will keep you up to date with any changes and news on how she is doing as we can get it on here.

Thanks in advance for prayers and support!

We have now added a photo gallery of Natalie to the site. Please be patient as we work to fix a couple of bugs with it, but it is functioning.

If you have a Wordpress site, and are looking for a plugin that will allow for easy integration with your Flickr photos, I can highly recommend using the Flickr Photo Album plugin from Joe Tan of tantannoodles.com. Thanks for the great plugin Joe!

If you weren’t aware, Natalie had another Endoscopic retrograde cholangiopancreatography (ERCP) done in late September. Yeah, if you can say that in one breath without choking, you’re better than we are! Basically, it is a scope of her pancreas. What they were looking for with Natalie was the cause of her pancreatitis attacks. Since she has been healthy lately, they wanted to do another scope and see what might have found as the cause. The only thing they found was a condition known as “pancreas divisum” which is where the pancreatic duct splits into two parts going into the pancreas.

Whew! You can read more about the ERCP on the National Digestive Diseases website.

Natalie has continued to grow to the point that she is getting to be a tight fit into her wheelchair. So we have had to order her a new one, so if you see her out and around, tell how how much you like her new wheels!

Natalie had a great summer, one without illnesses and without hospitalizations, so all was good. Since our last update, Natalie has done really well in therapies and in summer school. We spent the summer mostly indoors as the weather was so hot that it would have been rough on her to go outside for long periods of time. Natalie has a tough time with temperature extremes, so the excessive heat of the summer would have made it even rougher on her.

The summer was basically uneventful and she enjoyed going to summer school with her friends. She continues to make friends no matter what she does and keeps smiling and laughing, especially when she is outside or being surrounded by kids in her class. She is now in second grade, not bad for a little angel that the doctors originally told us would never come off the ventilator after her brain injury!

Natalie has many friends in her second grade class that love her to death! They fight over who gets to walk next to her down the hall, who sits next to her and helps her during story time. She is so worn out after school that she usually comes off the bus sound asleep!

We are working on creating a gallery of photos of Natalie, so if you know of a good wordpress gallery system, please let us know!

On Saturday night, Tricia’s Crohn’s disease began acting up, severly. I had to call an ambulance to get her and take her into the hospital because she was in so much pain (Thanks to the Burlington crew!). Tricia is still in the hospital, and will undergo abdominal surgery on Thursday to remove the affected portion with Crohn’s and also fix her abcess, which had come back. I am keeping updates current, as much as possible, on my blog.

So back to Natalie, she was throwing up on Sunday, quite a lot, and I just had a gut feeling that it was pancreatitis. No matter how much I was hoping it was just a simple stomach virus, I just had that gut feeling. You know, when it rains it pours. After sitting in the Emergency Room until about 1 a.m., the blood results starting coming in and her lypase (pancreas enzyme level) was over 8,000.

We finally got into her room, and she was sleeping so good. The next days blood draw showed her lypase was over 15,000. This got us a little scared as it is the highest she has ever had. On Tuesday, it was back down to 7,800 so we are moving in the right direction. Today (Wednesday) is is around 1,300 and we are hoping to start some feeds and oral fluid intake with her to see how she handles it.

If all goes well, we are hoping that we can come home on Saturday. This still just leaves the question of why does it keep flaring up? The doctors aren’t sure, so pray for some guidance to find a solution to this as Natalie shouldn’t have to endure this every three or four months.

We are now in Children’s Hospital again, but this time it was planned. Natalie had several procedures done to check for the source of her pancreatitis attacks, her pnuemonia, and to get her tonsils and adenoids removed. She is such a trooper! She is doing well, as we are in the hospital room as I am typing this. She is resting comfortably and we look forward to going home in the morning.

Her pancreatic scope was showing that one of her ducts was really tight and wasn’t letting anything out of it, so it was fixed. Now only time will tell if she redevelops pancreatitis again, but we are praying that she doesn’t. Her lung scope was ok, and everything looked good with her in that area, with no concerns. Natalie’s pulmonologist was glad that her tonsils were coming out because they were so large that they were occluding her airway some.

Please keep Natalie in your prayers as we get through the next two weeks of recovery from her tonsil surgery. We greatly appreciate all of your support!

We entered into the Christmas break for Natalie with hopes of wellness and presents for all. However, the pneumonia bug got a hold of Natalie and ruined those plans. We visited the ER a few times, with one overnight stay, and ended up coming home with an oxygen machine. So, as we were busy taking care of Natalie to make sure she was getting better, Tricia started experiencing leg pain.

After Natalie was better, it seems that once the pain began to be accompanied with fever and flu like symptoms, we took Tricia into the ER to get looked at. A CAT scan showed that she had an abscess in her leg from her Crohn’s disease. It wasn’t big, but a 5 day hospital stay on IV antibiotics was just the beginning.

Once discharged, she is now at home with a PIC line to continue on IV antibiotics for another week. She just had the repeat CAT scan, and goes for a doctor’s appointment to find out more about it on Monday. Keep her in your prayers for healing, as this could lead to abdominal surgery to clear it. I will hopefully post again in the next week or so to keep you updated!

The trip went really well, and we had great weather until the last couple of days. The temperature was nice, except the last couple of days it got into the 90’s with high humidity. We survived the sauna in Florida, and had a wonderful time! Natalie was laughing and smiling a lot, and we took a lot of pictures, which is another project that I am working on getting some of them organized and placed on here. We stayed at Give Kids the World Village for our time in Florida, and this place is truly amazing! The staff was exceptional, and the activities that they offered for kids with critical illnesses from around the world was stunning! There were movies every night, carousel rides, a visit from Disney characters and even Santa Claus with snow!

I will be working over the next couple of weeks compiling some photos of the trip, and also creating a photo album of Natalie, so keep checking back