Monday, May 11, 2009

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!

Thursday, May 07, 2009

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

Wednesday, May 06, 2009

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

Tuesday, May 05, 2009

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.

Monday, May 04, 2009

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!

Monday, April 27, 2009

New Post Coming Soon

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

Monday, April 13, 2009

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!

Nate in his stander with his two pictures from Johnna and Aiden from school


Saturday, April 11, 2009

Update (School, Therapy, Owen., etc.)

We took Nate to school yesterday for the 2nd time this spring. The video is of his first day. This is his kindergarten class. The teacher, Mrs. McCain, also comes to his house once a week, as well as a special ed teacher who comes another day. Mrs. McCain has been talking to her students about Nathan all year and also showed them his blog. To prepare Nate for coming to school, she made a video of the kids for Nathan. They are reading a couple of books to him and then one by one say "Hi Nathan" and tell him their name. A couple said "I hope you aren't scared when you come to school". So sweet - of course, I cried. It also shows the classroom and different things they do in class. This was the nicest thing that Teresa (Mrs. McCain) did for Nathan. She didn't have to do this. I ABSOLUTELY LOVE HER! She is so good with Nathan! I think the video and also a yearbook with all the kids pictures, helped Nate get ready for going to school.

The first day we took Nathan, we started by letting the kids ask questions about Nathan. TONS of questions! But, I like that! Then they did the seed project which is on the video. Nate was ready to leave after about 30 minutes. He got bored and also was very tired (from staying up three hours the night before!).

Yesterday went really well. We got there and the kids were on the mat and all going up to the front of the class one by one to talk about their "insect" they had researched. Nate sat behind the kids and listened, looked around and had some time to get comfortable. Then they sang and danced (which Nate really liked - he loves music!). Mrs. McCain read a book and then there was about 10 minutes before the lunch break, so she asked the kids if anyone would like to go up to Nathan and talk to him or say something. They all said "YES - I DO!". They took turns and said different things like "I'm so glad you came to school today", "I really like you a lot Nathan", "I hope you come back to school", "I think you're cool". Needless to say, I was trying so hard not to let the kids see me crying! So very touching. Nate loved every minute. He was smiling and making sounds - just beaming! It was a great day!

I wish we could go to school more than once a week, but his schedule is so busy right now. He has speech therapy four times a week; the teachers still come out twice a week; the occupational and physical therapists come every other week; trying to get him in the stander on a more regular basis; doing the slings once or twice a day for exercise; and then we still try to fit in some "play" time! And he also needs "down" time like watching Spongebob and Veggie Tales (something he will not go without!) The speech therapy is long overdue. He has been getting private therapy through insurance once a week for awhile, but needed much more than that. The school system finally got a therapist from Tulsa University to come out and work with him three hours a week and so far it has really helped! I really like Sandra (the new therapist). He's started practicing the eye gaze system and has done really well and he's only done it like four times. The school ordered him two new programs that are sentence building education programs. They are really great and just what he needs.

The power chair is on hold right now - waiting on the DME company (as always) to get a switch control ordered. We have decided the best way for him to operate his power chair is with a scanning switch that lights up and says "forward, backwards, right, left" and he hits his switch with his knee for the direction he wants to go. The old joystick he was using with his finger just didn't work. He could operate it a little bit, but didn't have much control and accuracy. Not the kind he really needs for driving it correctly. He was able to have fun moving the chair, but didn't have the movement to control it enough.

Owen is doing great! Growing like a weed and the funniest kid on the planet if you ask me. He makes me laugh every day. He's so sweet with Nathan and always wants to help. He's still not saying words, just babbles, points and grunts (like a cavebaby!) all the time. The doctor wanted us to look into some speech therapy so he has an evaluation next week. I met with the director and she seems to think he might not even qualify (it's a state based program) because he's "normal" in all other aspects. There's nothing wrong with his hearing and cognitively he's brilliant in my opinion! I think he's just not talking because he gets anything and everything he wants and needs. He has no reason to talk yet! Spoiled kid!

I think spring has FINALLY arrived. We are looking forward to warm weather and more time outside. So, that's the long update for today! Thanks for checking in!

Jennifer