natalie-update.org

So, we survived Christmas, and New Years. It has been a tough couple of months around the house, with illnesses and other issues that have kept this update from occurring before now.

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!

Natalie had a great time on her Make-A-Wish trip to Disney last month. I have been really busy working out some bugs with the move to the big time internet and fixing some bugs with the site, so forgive me for not updating here lately, but here is a brief update.

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

Well, this last month has been really hectic! Natalie was granted a Make-A-Wish trip to Disney, so we had been busy with doctor appointments, and trying to keep her healthy for her wish trip. All went well, and look for pictures coming soon (and a surprise with this site)!

Natalie has been doing well at school and comes home just absolutely worn out! I’m not sure what they do to her there, but she is really working hard. We have been working on getting her headrest and switches configured correctly in order for her Dynavox, and that has kept us busy as well. Phoebe has taken a liking to riding in Natalie’s chair, and sometimes Natalie is still in it! She keeps us busy, and Natalie really enjoys playing and watching her. She is really good with Natalie as well, taking things to her, talking to her, etc. One of the sweetest things is when Natalie coughs, Phoebe will go over and pat her on the belly asking if she is alright! And when it’s bedtime, she gives Natalie a night-night kiss.

We are truly blessed, and thank each of you that keeps us in your prayers and offers support. It really means a lot to us and has helped us greatly over the last 5 years since Natalie became sick. Thank you!

Natalie has been doing really well lately. We have changed her formula to a new one and it really has made a difference with her. She seems better without the gagging like she was experiencing on the old formula.

She has also started into her new 1st grade room, and is making lots of new friends! We are hearing from her teachers that she is catching the eye of some of the boys in the room. Guess old dad is gonna have to talk to her about them! Anyway’s, she is really enjoying school and comes home completely tired from all of the days activities. Natalie is fighting a little cold right now with the good old runny nose and cough. I guess it’s that time of the year….back in school with the weather changes.

We are looking forward to the fall, and the cooler days have made it easier to have Natalie outside, which she loves! She enjoys going for walks with Phoebe and watching her make a mess on the deck. Natalie is such a blessing to see her when she smiles! Nothing compares to that smile and laugh! That’s about all for now!

The last couple of weeks have been rough for Natalie. It began on the 17th with some vomiting and wretching spells. We knew that the stomach bug was going around, but she didn’t look good. Tricia took her to Children’s that night, and luckily, they ran some blood work and found the problem. Her pancreas enzyme Lipase was extremely elevated. The normal range was 40 to 50, Natalie’s was over 9,000!

She was really sick and was admitted to the B5 unit, which is a step down from ICU. Natalie was placed on IV fluids, which she retained quite a lot of. The doctors then were worried not only about finding the cause of the pancreatitis, but why she was holding all of the fluids. They began running tests and trying to determine why her pancreatitis had returned. She had a problem with it in June, but not to this extent.

The doctors were EXCELLENT! Doctor B. and the Blue Team were great, and showed such compassion and energy that it was amazing. The staff was great and not that we want to go back anytime soon, but if we had too, we would hope that we can have such a great experience in hard times like we did this time.

Natalie did get better with rest and some drugs to help pull the fluid out of her, and we came home on Friday the 25th. We are still taking it easy with her as she is not tolerating her pre-hospitalization schedule well. Hopefully with some more rest and easing her back into her routine she can get better.

We will keep everyone up to date as best as possible and let you all know how she does when she starts back to school, hopefully later this week or next.

Natalie has been doing really well since the last update. She has graduated from the Perlman Center at Children’s Hospital. She is getting ready to start first grade too! She did give us a scare, however, when one morning she began to gag and aspirated. She had quit breathing and we had to call a squad to transport her to the hospital. We spent five days in the hospital with her, and the doctors determined she had pancreatitis.

She also had pneumonia, and was treated for that with no complications.We made it through the summer, and Natalie really enjoyed summer camp this year. She is doing really well with her Dynavox and has been making great progress with it. We are still attempting to figure out the head switches that she needs so that she can use it more at home. Natalie also had a baclophen pump installed back in the spring. The pump was installed in her abdomen, and is about the size of a hockey puck. It gives her small doses of Baclophen directly into her spinal column which helps loosen up her muscles in her body without the drowsiness and other side effects.

We are getting ready for another school year and lately it has been really hectic keeping up with all of the doctors appointments for school time, but we are making it so far. Natalie really is a trooper, and such a blessing for us. Even though she is hard work at times, when she smiles and looks at us when we are near her, and then she starts laughing, it melts our hearts.

Well, life has been really hectic lately. Natalie has been doing really well in school, and just tested in her age range for cognitive skills. We know she is in there, and are trying to get her out! Everyday that she comes home from school, she is laughing when she gets off of the bus. We’re not sure if she is happy to be home, or anxious to have little sis crawling all over her!

Natalie also recently received her Dynavox DV4. This really neat device will allow Natalie to make selections on a computer screen, which will then "talk" for her to us! She has been using it at the Perlman Center at Children’s Hospital for some time and has really been doing well with it. We are really excited about getting her to start letting us know what she needs, or wants, or just to let her express herself at home and all around in life!

Wow! Time sure flies when you stay crazy! Life since our last update has been really hectic! Natalie has been doing just great in kindergarten, and has really adapted well to her new school. She was recently tested at the Perlman Center and tested at a 6 year old level! We know she is in there, and are working each day to find that special something to bring her out more and more!

We are awaiting some parts for her wheelchair to help her sit better since she is growing so much. So far, Natalie has stayed well since going back to school, even though the rest of the house has been sick some lately. We thank God for that blessing each day, as when Natalie gets sick, it really zaps her, and us since she doesn’t sleep well. Her seizures have really decreased lately also, even though she is laughing on purpose a lot more too! Natalie’s Ride went really well that was put on by some good friends on September 17th. The weather was great, and we had about 100 bikes come out for the event, where a good time was held by all.

This year has been a really busy year so far! Natalie was in and out of the hospital a couple of times, she graduated preschool at Stephens Elementary, and has graduated from the Perlman Center at Children’s Hospital. She is going to Redwood this summer for their summer program, and is attending an adaptive communications class at the Perlman Center again.

She is doing really well making choices with switches and computers, so we are hoping to be able to get her one of her own to use all the time in the near future. She is growing like a week still, not so much in weight, but she is really long! Natalie has been laughing a lot lately, especially when little sister Phoebe plays with her or gets in trouble. She is also much more alert and we have been using eye gazing and hand positioning to allow her to communicate her choices to us, and when she makes a choice, she is definite about it!

We recently went to the Disney store to purchase a new swimsuit for Natalie, and held up two of them for her to pick from. She liked the little mermaid one. Even switching them around in front of her several times, she kept going back to the little mermaid. We are seeing more and more of her personality each day, and it is amazing for a child that they said would never come off the ventilator or open her eyes again!

Well, we survived the Christmas season with all it’s hustle and bustle, and commercialism, and we hope you all had a very Merry Christmas and Happy New Year! Natalie has been doing pretty well so far, with the new medicine to control her seizures, although, at the time of this update she is in the hospital being checked for severe constipation and other issues.

We have been doing well with keeping up on Natalie’s busy schedule, and she really enjoyed being able to get back to school after the holiday break! She really lights up and smiles when she knows she is seeing her friends and getting to play. She even gets in trouble at school for laughing when the other kids get in trouble!

Natalie is really enjoying being around Phoebe when at home, and really watches her move around, and smiles when she gets fussy and cries. We think there is some jealousy going on however, because when we hold Phoebe for her night time bottle, Natalie usually gets fussy, and quiets down when we hold her too. That is getting to be an adventure in it’s own because she is almost 50 pounds!

We thank all of you for your prayers and support during this holiday season, and hospital stay and hope to keep further updates coming along more quickly!