Update 1/17/07

Nate is doing better. He's not as fussy and seems to be feeling okay. He still has the bulge on his side, but it doesn't look as large as it was a couple of days ago. We had to cancel his Dr.'s appt. yesterday due to the weather. Hopefully, we will get in sometime next week and get a full report.

We are just taking it easy and waiting for the ice to melt. School has been canceled and we've obviously been stuck inside.

Nate is still tolerating his lift very well. He actually seems to enjoy it. I told him he's special because it's like he has his own amusement park ride in his room! The hard part will be when we start practicing using the lift to get him in and out of his wheelchair, stander and power chair. Getting him in the bathtub with the lift is pretty easy.

Thanks for checking in!

Jennifer

January 11, 2007 Update

Well, another weird medical thing is going on with Nathan. He has a bulge on his right side. He has been acting very uncomfortable the last couple of days and cries when we start to feed him through his g-tube. The bulge is right about where the liver is. I called the Dr. yesterday and the nurse said as long as it doesn't get bigger, his stools and urine output seem to be normal, his residuals are normal and he doesn't get more fussy, we can wait until next Tuesday to see Dr. Carey (we already had an appt. scheduled for that day). We are not doing much with him right now other than letting him rest and making sure he is comfortable. We are hoping this is nothing and it will pass. If the bulge is still there on Tuesday, we pray the Dr. has a simple explanation and it's nothing serious.

On another note, over the weekend, we started getting Nathan in his ceiling lift to transfer him to the bath tub. He tolerated it very well and it was MUCH easier on me and on him also. He is to the point that he's so big and tall, we really have no choice but to start using the lift. We don't want to risk injury to Nate and are trying to save our backs!

We will update again if anything changes or after we visit Dr. Carey on Tuesday.

Jennifer

Back in the Swing...

Yesterday was cold but it was a beautiful day so we decided to get the Little Man in his swing for the first time in way too long. He only lasted about 10 minutes before his secretions were too much for him to handle so we brought him back inside but we got a couple of good pictures before then...

Happy New Year

Jennifer, Nate and I want to wish everyone a HAPPY NEW YEAR!

We thank you for your prayers & support in 2006 and hope that 2007 is filled with health & happiness for all!

It was a great start to 2007 in Tulsa...it was cold, crisp and sunny today so we took Nate for a walk/stroll this afternoon.

The Last of the Christmas Photos (I Promise!)

Daddy Reading Christmas Books to Nate on Christmas Eve

Nate and Uncle Jeff Watching The Movie "Cars"

More Christmas Pictures of Nate Opening Presents (Including TMX Elmo that his Nurse Jennie Got Him!)

Ho ho ho...MERRY CHRISTMAS!!!!!!!

Nate, Jen and I wish you and yours a VERY MERRY CHRISTMAS!!!!

Pictures from the last couple of days...

Dinner on Friday night with Uncle Jeff, Nana, Grandpa Wayne, Mom, Judy and Grandpa Jody. Nate didn't take a nap that afternoon and pretty much had a meltdown when we brought him out. We thought that he would go right to sleep when we took him back to bed right before dinner but he entertained us all with his numerous sounds as we ate.

Nate gets to open a present early!

12/21/06 - The Christmas Celebrations continue...

Mommy, Nana and Nate work on a Christmas ornament for our tree...




Nate puts the finishing touches on his ornament...




Nate & Mommy show off his handiwork...

The Christmas celebrations begin...

Sorry for the delay in making updates this week! It has been a busy week for everyone so I thought I'd post a few pictures from last Sunday when Pop, Grandma Annie & Aunt Amy came up to Tulsa to celebrate Christmas...

Here is Nate relaxing before his company arrives...

Nate, Pop, Grandma Annie & Aunt Amy before opening presents...


Aunt Amy shows Nate one of the books she got him...


Charlie Brown's Christmas Special was on TV on Sunday night so Nate got to watch it. He seems pretty interested in it at this point in time...


10 minutes later, his interest had waned and Dad had some fun with the camera! (At least it wasn't a Magic Marker Mustache!)

Thanks for checking on Nate and we'll have some more pictures to post later this weekend!

Doing Great This Week!

This week has been great! Nate has been able to be off his bi-pap a little more and his lungs sound really good.

Monday he had school, and we were excited to start it again. But, he cried the entire time and threw a complete fit! It was almost funny. He made a Christmas ornament and we sang Christmas songs. He apparently just wasn't in the mood or was uncomfortable. Oh well, maybe next time he'll do better and actually enjoy having fun with his teacher!

Nate has been in his Kid Kart a couple of times and gone outside to enjoy the nice weather. He practiced in his power chair yesterday and even though it had been two months since he's practiced driving, he hadn't forgotten anything. He drove all around and did awesome! He loved it! The PT and OT were here and couldn't believe how well he did. Then we practiced getting him in his ceiling lift. He tolerated it very well.

Hopefully, today we can go out for a drive or maybe a walk. Since it's so nice, we might try his power chair again.

We are so happy he's doing better and we thank the Lord for his recovery!

Jennifer

Drivin' my Power Chair!

Here is a picture of Nate practicing his driving skills in his Power Chair this afternoon.

A fairly busy day...

The day started off a little rough for Nate but ended up being a pretty busy day for the little guy. This morning he slept until about 8:45AM so we really didn't have time to use The VEST and cough him before his 9:00AM feeding. He had lots of secretions and we could hear some wheezing in his chest. Luckily after using The VEST and coughing him at 11:00AM, he did much better.

The highlights of his day were:

1 -- A HAIRCUT -- Mom agreed that Dad could use the shears on the sides and back of his head while Sue could trim the top with the scissors. The haircut went pretty well and he only fussed a little bit while we were turning his head to cut in the back. The end result was a GREAT haircut...short on the sides & back and still some waves/curls on top. Now we just have to find time to get his Christmas picture taken.

2 -- A BATH-- After a haircut, a bath is a necessity! He had a good bath...about 30 to 40 minutes with a lot of kicking and swinging his butt in the water.

3 -- Laying on Mom's chest -- After his nap, Nate came out into the den and laid on Jen's chest while watching the football game. He laid there off his BiPAP for about 40 minutes then we moved him to his Kid Kart.

4 -- Sitting in his Kid Kart -- This is the first time we have been able to get him in his Kid Kart since he got home from the PICU. He really enjoyed watching SpongeBob on the big screen in the den and watched the first episode while off his BiPAP as well. After about an hour or so, he got tired of it and was ready to do something else. We had some fun racing around the house in the Kid Kart and doing "doughnuts" in the kitchen. It was great to see him do so good in his Kid Kart because he has school tomorrow and he'll be in it for that session.

We figured that by now his little butt was kinda tired so he is back in bed with his arms and legs in his slings just swinging away!

Thanks for checking on the Little Man!

Trey

Slowly But Surely

Nathan is doing better. He's been able to take a bath every day this week and I've been able to hold him a couple of times. Obviously, he can't be on the bi-pap during his bath or when I hold him, but he's tolerated it very well. He's had some wheezing in his lungs the last couple of days, but nothing too serious. He had another bad night the night before last, on oxygen all night and very uncomfortable and fussy. But, for the most part, he's headed in the right direction. Our next step is to try to get him sitting up in his Kid Kart for awhile. And, hopefully, he will start school again next week. Thanks for checking in!

Jennifer

More Emotions

As I re-read my earlier post and thought more about my feelings I had this morning, I couldn't help but get upset with myself. I know I am only human, and those feelings are normal for parents in our situation. But, playing in the snow, walking, running, jumping on a trampoline, playing soccer, etc., are the very LEAST of the things we wish Nate could do. I wish Nate could breathe without a machine; cough and blow his nose without machines; swallow so he could eat foods and drink by his mouth, instead of through a button in his stomach; swallow so he wouldn't choke on his own secretions; scratch an itch he has with his own hands; and, be able to talk so we could help him better and understand what's wrong or what he needs. These are the MAJOR worries. Sure, we would love Nate to be running around playing, but his HEALTH is MUCH more important than making a snowman!

This site is a great place to vent and thanks for listening. But don't worry, you won't be reading posts like this very often, because we are a very optimistic family and we have FAITH....faith that the Lord hears our prayers every night asking for all of the wishes mentioned above; Nate's complete healing; and, a cure for SMA. And most important of all, we know He hears our THANK YOU's for blessing us with Nate's life.

Jennifer

Bad Night, Good Day

I am always reluctant to post that Nate is doing better. Actually, he is doing better today and in general. However, he had a bad night. Trey and I were up all night with him. He was crying, very uncomfortable, and desatting all the time. He was on oxygen all night and we would turn it down, then have to turn it back up, etc. We really aren't sure what was wrong with him. His new bi-pap functions differently than his old one and we think it's not working like it should. We finally changed to the old bi-pap in the middle of the night, but he still continued to fuss some and needed O2.

Then this morning and so far today, he has done very well. No O2 needed and he is in a good mood and seems comfortable. We are so happy about that!!

We have a lot of snow here and when I got up and went outside to hear lots of kids playing in the snow and having a great time, I got very emotional. Of course, all I could think was "I wish Nate could be out here having fun in the snow". Sometimes, my heart aches for all the things he can't do like normal children. In the winter, I wish he could play in the snow. In the spring and summer, I wish he could be out playing, jumping on a trampoline, playing soccer, etc. I know that Trey and I notice things that normal children can do more so than others notice it. We realize that, to most people, those things are taken for granted and we wonder if they know how blessed they are. Then we grieve for Nate. But it QUICKLY passes. All we have to do is go see Nate, see how happy he is, that he doesn't know any different and he is special in his own way. He doesn't care about those things other children can do, so why should WE!!!! He's happy and has a wonderful quality of life. He CAN do things, he can do a lot of things! And we celebrate all of the things he can do, even if they are minor to some people, they are MAJOR to us! We couldn't love him any more or be more proud of him!

I got over my emotions, and thought OK, so what that he can't play in the snow. He can enjoy it!!!! So, Trey and I headed out to build Nate a snowman outside his window. He watched us and laughed and made lots of sounds. Just because he can't build a snowman, doesn't mean he can't have one. He loves it!

Pics of Nate's Snowman

Doing Better

Nate is doing much better! Dr. Carey called last night and said his chest x-ray looks good. They are still not completely clear, but his lungs have improved. He is on minimal oxygen now, usually just when he's in a deep sleep. He is in great spirits and happy as ever!

We got a new bi-pap machine and we are still adjusting to it. It has a heated humidifier built in and that seems to be helping his nose problems.

He had x-rays done of his legs Monday. The right leg is completely healed. The left leg is in the "healing process". It doesn't seem to be bothering him as much as it was in the hospital.

We are still keeping him "bedridden" until we are sure he is well and his legs are completely healed. He watches TV and movies; we read books; and he is able to use his slings and kick his legs to music. As long as he is feeling good, can breathe well and is not in any pain from his legs, he doesn't care what he's doing - he's happy and content just being comfortable and loved.

We are snowed in here. We didn't have nursing last night, today, and won't tonight or tomorrow either. That's okay though - Trey and I can handle it and we are enjoying some quality time alone with our little guy.

We hope Nate can resume school next week and maybe get back to his normal routine, and we can get him out of bed!

Thanks for your prayers....we know they helped Nate get over this illness and all the rough times he's had in the last month. We appreciate it!

Jennifer