natalie-update.org

It’s been a while since we have updated Natalie’s blog.  We have been extremely busy with litigation and  life.  We are happy to say that we settled the law suit and so that chapter of our book is closed.  Natalie is doing well.  We had a busy summer.  We went to Disney and stayed at the Wilderness Lodge.  Here are some pictures:

Wilderness Lodge

Natalie and Tinkerbell

what a smile!

Natalie, Phoebe, Belle and Beast

Natalie is having so much fun!

As you can see we had a blast.  I wish I could share all of our pictures with you but we took around 400 photos.  Disney is so accommodating to families that have someone with disabilities.  They go out of their way to make it truly magical.  We had great weather and the resort was incredible.  We are gonna definitely go back!

Natalie’s left hip is coming out of socket and so we are try to deal with that. It is extremely painful.   The doctors have done botox and phynel injections.   We recently have gone up on her baclofen pump so hopefully she will be more comfortable.  She has to get new ear tubes placed.  She had a bad ear infection which popped the ear tube out of her ear drum, so now we have to get a new set.  They place her completely under to do this but it has always gone well in the past and we come home that evening. 

School starts tomorrow.  I can’t believe Natalie will be in 4th grade.  Her teacher is a sweet christian gal.  She has the assistant that she has had for a few years now.  They are like peas in a pod.  Ms. Chris is really good with Natalie.  I am eager to see how things go this year.  Natalie is starting the year off healthy.  Please pray that she will remain healthy and safe.  Pray for God to blanket her withhis protection so that we can have a smooth fall and winter season.  In the past pneumonia has really taken her down. 

We have begun the plans of  building  our new home.  The builder anticipates that we will be in the house by February.  It is going to be so nice for Natalie.  We feel truly blessed by the Lord to have this and we want to glorify Him with our praises.  I will post pictures of the process as soon as they break ground.  It is exciting. 

I hope to keep this blog updated better now that things are getting back on track.  We have been dealing with this litigation since 2002 and it has been a journey.  God has been great to us through it all.  We have always looked for Christ in the midst of all of this.  We want to be shinning lights for those who have no hope or have lost hope.  There is hope in Jesus!  This earth and this life is not the end for us!  We will one day see all of our loved ones healthy and full of joy.  That is hope. 

Thanks for praying for Natalie and our family.  We truly appreciate the support, encouragement, love and kindness.  You are a blessing to us!

because of HIS grace,

Tricia

Well it has been a while since we have updated Natalie’s site.  We have been busy!!  Natalie is in third grade and loves school.  We had a rough start to the school year.   She continually came down with pneumonia.  She also had multiple ear infections.  We had a few months were she would cry during her feedings. Her left hip is moderately out of socket which is tremendously painful.   After a couple of perforated ear drums and several doctors visits we all came to the anonymous vote to place ear tubes in and do a scope of her esophagus and stomach.  That was done a few months ago.  The procedures went well.  They did find that she has esophagitis above  her g-tube on the inside.  We are having to give her Mylanta for that.   She is such a trooper!!

The Christmas holidays were great.  We did NOTHING!  It was so nice to relax and get some rest.  We tried to make sure that we were placing Christ in the CHRISTmas.  Our faith is so important to our family.  We are getting more and more involved in our home church.  Natalie loves being in church…she seems to laugh and squeal when we are praying.  I guess she figures that is her time to shine with Jesus.  I definitely believe she has a special connection with our Savior.

Natalie just turned 9 years old last week.  How time flies.  I can’t believe that Elliott and I have a 9 year old.  She has overcome the odds and amazed many.  She is such a blessing to us.  Even though our road is tough and long we continue to hope.  We continue to provided the best care we can and make life as fun as we can.  Some days we do this better than others.  I do have to say that Natalie has taught me about life and what is important.  Things can change in a blink of the eye.  Do not take anything for granted and treasure every moment.  Make memories. Laugh, laugh, laugh!!  What is the alternative?

So today we are celebrating Natalie.  We are having a small get together for her birthday.  For those out of town family member’s, we will miss you terribly!   We praise Christ for Natalie and her testimony to his love and hope.  Yes today is a celebration!!!!  We will update the photos after her party.

This year has gone by so quickly!  Natalie has had a pretty rough time this year so far.  She has pneumonia, again, as I write this.  She just can’t seem to get over it.  We have tried antibiotics, machines to help her cough and lots of other stuff.  Natalie has been smiling a lot through all of it, but she seems to sleep a lot also.

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.

Well, we were able to come home on Monday afternoon late from Children’s Hospital ICU.  Natalie has pneumonia again, but this time they think that she became hypoxic from it overnight causing her to not want to wake up and start this whole scare.

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.

Well, it has been awhile since I posted an update.  Almost 3 months.  It was because “life was good” and Natalie was doing really well.

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 finally gotten our newest feature up and running!

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!

Natalie has really been enjoying going to school lately. She has been doing really well and paying attention (in between the laughs we are told) to what is going on in class with her friends. She has also been sneaking some naps in at school lately too.

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!

Well, time sure flies when your having fun!

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!

Well, where to start. We are now in Children’s Hospital again, with pancreatitis again, and have been since Sunday night. Natalie began throwing up on Sunday morning at home, and after keeping a close eye on her, we brought her into Children’s, but that’s not where the story ends.

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.

Life since Christmas has been pretty good for Natalie! She has really enjoyed going back to school since Christmas break and her illnesses. She continued to make progress with her friends and enjoy being around them (plus coming home worn out!).

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!