Nathan Update

Nate's been doing fine. He's still having some episodes of not being able to maintain his O2 levels while he's sleeping and we can't figure that out.

He got his new manual wheelchair and it fits him much better! It still needs some adjustments though.

He was Spartan of the Week a couple of weeks ago at school and we were so excited. A poster of him with tons of pictures was posted on the classroom door. Then at school he was at the front of the class and the kids would say nice things about him and I told the kids a little bit about his life and went over all the pictures. Nate hated it - cried the whole time! He doesn't like being center of attention. He prefers to hang back and observe. We had been talking to him the week before about him being Spartan of the Week and what it was all about. The day after school, he was on his eye gaze communication device and I asked him why he was crying at school and what was wrong. He said he was afraid like 7 times! Poor little guy! He was nervous! The kids also drew pictures of the Nate and say something nice about him. The teacher put together a book with all the pics and it is too cute! Some of the pictures have him with his bi-pap on. The kids said things like - "he's cool", "he's nice", "I love his wheelchair - it's pretty", "he's cute" and my favorite "he's the best friend a man could have". Kids are so cute. We went back to school on the last day of school and he did much better, just hanging out with the kids.

We're still waiting on his new switch for the power chair! Hopefully, that will be in soon and we'll start practicing. He loves to drive!

That's it for now! Thanks for checking in.

Jennifer

Owen Eating at the Table

When it's time to eat, he used to pull up his high chair, now he gets into a chair at the table. He's not even 2, and doesn't even really need a booster seat - BIG BOY!

Owen - Future Plumber

Nate and Owen in the Pool - Youtube Video

Owen had been in the pool a couple of times before, but this was Nate's first time. He did great and loved it! Owen wasn't too thrilled the first couple of times we got him in. But, we found a new game he likes (pouring water into cups) and now he loves the pool. We've tried getting him in floaties and carrying him around, but all he wants to do is play with the cups!

http://www.youtube.com/watch?v=6uYrht0CtIw

Reading is fun...but dangerous

Last night, Owen pulled the chair up to Nate's bedside and "read" to him. Unfortunately, as he was climbing down, he got twisted and had a run-in with the rolling shelving unit that holds some of Nate's equipment...let's just say the shelf won Round 1.

It looks worse than it feels, he hasn't cried or fussed about it since right after it happened and he slept all night. We tried to put ice on it but he was having none of that!

We'll do another update over the weekend with all the stuff that has gone on since the last one...Nate as Spartan of the Week, last day of school, delivery of the new Quickie TS manual wheelchair and Owen in the pool for the first time this season.

Trey

Trey's B-day/Mother's Day Pics (of Owen)

We celebrated Trey's birthday and Mother's Day with Gammy, Nana, Grandpa Wayne, Uncle Jeff and Aunt Bradette We had filets and cake for dinner and Owen LOVED both! After dinner, he was full, bored and looking for some fun, so he crawled under the table and played with Sammie.

Owen "Reading" to Nathan

Owen has seen me, my mom, my dad, and everyone else read to Nathan. He knows we get a chair and put it by Nate's bed. Then go get books from the bookshelf. So, one evening Owen decided he was going to be the one who read to Nathan. He pulled the chair in Nate's room, right by his bed, went to the bookshelf, grabbed a book and climbed up on the chair and "read" it to Nate. Then, he went and got another one and another one. It was the cutest, sweetest thing! Now, he does this at least once a day. He's so smart - he picks up on everything we do with Nathan!

Nathan Update

Nate is doing much better! Still not 100%, but we're getting there. He's been able to take tub baths again and we've been able to take him out a couple of times. Luckily, it seems this illness was a "minor" one, as far as Nate's sicknesses go. He's still be having school at the house and speech therapy. He's doing great with his eye gaze communication system. He's learning how to talk - with his eyes! It's truly amazing. I can't wait until he gets really good at it and I can know what he needs, wants, likes, dislikes, or just to hear him tell me Hi Mom, I love you! Oh, I'll melt! We're going to school this Friday (and Trey is going also). It's a big day. Nathan will be "Spartan of the Week". I'll have more on that with pictures later. We're hoping to open the pool this weekend and hopefully get Nate in if he's doing okay! Summer - yippee!

Thanks for checking in!

Jennifer

Nathan Update

Nate is doing better. He is still desatting some when he's sleeping. I've turned up the pressures on his bi-pap, but sometimes he still needs a little oxygen. His lungs sound better, but not totally clear. Depends on when you are listening - sometimes they are gunky, wheezy or diminished. Luckily every day seems to be better than worse!

On another note, I've got some really good pics I need to go through and post. They are really cute!

Thanks for your prayers!

Nate - Thursday Morning Update

Nate had another good night and a good start to the day. We were able to cough up a lot of stuff this morning and his nose had very little congestion. He's back to making his normal sounds and his saturation level was back up to where it should be. His heart rate is back in the normal range more often but he still has some periods when it is elevated.

We're cautiously optimistic and really appreciate all the prayers for him!

Thanks,

Trey

Nate - Wednesday Morning Update

Nate had an OK night after a very up & down Tuesday. He only desatted a couple of times last night but was awake for about 2 hours "visiting" with Jennie. As expected, he was very congested and "gunky" this morning so we coughed him about 6:45AM. We got a lot of snot & congestion out of his nose and this really helped him. Over the last couple of days, we had not gotten much of anything out of his nose so this was an improvement.

The radiologist's report came back last night and he stated that Nate has "pulmonary congestion" but no pneumonia. The pulmonary congestion basically means excessive fluid in the lungs and this explains why sometimes his lungs sound clear, then we hearing wheezing and then they sound diminished, etc... The radiologist will also compare Nate's x-ray from yesterday to ones they have on file and let us know if he sees anything else.

The prelim results of the cultures showed low amounts of Staph & Pseudomonas but nothing to be concerned about at this point in time. I believe that Nate's cultures will always show Pseudomnas since he had a long bout with it years ago. Dr. Rippy told us to just keep doing what we're doing...meds, breathing treatments, the VEST and cough assist sessions. He's going to talk with Dr. Cyrus today and let us know if they have any other thoughts.

Thanks for checking in on the Little Guy...

Trey

Nathan

Nate is up and down. One minute you think he's much better and the next, he's really struggling. He hasn't run a fever yesterday or today, which is good. And he hasn't needed any supplemental oxygen, except for this morning for a little bit. This morning was rough and he's still not doing great. The speech therapist came out and only stayed a few minutes. Nate started choking, and then he was too worn out to do anything. Right now he's stable and sounds good, making cute sounds and looks better. The nurse heard wheezes in his lungs this morning and yesterday his lung sounds seemed diminshed to me when I listened. I've called the dr. to get a chest x-ray hopefully today. We are still waiting on the culture results. I'll update when I know more.

Nate is Sick

But, he's doing better today! Apparently Nate caught a cold or whatever Owen has had for the last week. Nate started struggling last Friday and had a pretty rough weekend. High heart rate, tons of thick secretions, running a fever, and could not be off the bi-pap AT ALL. We were coughing him a TON. Saturday was the hardest day. Yesterday he did better until late afternoon. He was on a tiny bit of oxygen overnight to keep his saturations normal. We took in cultures yesterday for Influenza A & B and any bacterial infection. Not sure when we will get those results. He started Amoxicillin yesterday. We can tell a difference today. His eyes look better, his heart rate is better and he is smiling and making his cute sounds. We obviously skipped going to school Friday, but are hoping he can go this Friday because Trey is off work and wants to go with us. If not, we'll go the following week because Nathan is the "Spartan of the Week". (Will update more on that later with pics, etc.).

We are relieved that it looks like Nathan is getting a little better. We would appreciate your prayers. Thanks for checking in!

Jennifer

Random Pics of Owen

Nate at School

Pics of Nate with his friends reading to him (which they LOVE to do) and pics of him with one of the school "pets".

Ducks

The teacher brought some baby ducks to show Nathan during his school session at the house. He wasn't quite sure what to think about them. They quacked the whole time through school. So cute! Owen wasn't sure about them either!

New Post Coming Soon

Been so busy and tired. But, I'll post new pics and an update soon!

Easter Pics of the Boys

Easter Pictures - Nathan With His Eggs

Easter Pictures - Owen

A couple of these are of Owen putting his Easter basket in the laundry basket. I kept saying basket when he was running around with it and I guess that's what he thought he should do with it!