A better day...

Nate had a better day today....he still has a lot of secretions but they have decreased compared to Thursday night and Friday. We suctioned out several thick globs today but the new medicines seem to be helping. We were able to give him a quick bath this morning and I know that made him feel better. He took a good nap and fell asleep around 9:30PM. Hopefully, he will have a good night and get some much needed rest.

We know that he is not out of the woods yet but he is slowly headed in the right direction. Thank you for all your prayers & support!

Trey

Good night...so far so good today!

The meds seem to be helping. A home health nurse is coming to draw blood for a CBC count to check for any infection, since he has been running a temp also. Then we will know if he needs antibiotics on top of everything else.

Staying Home for Now

Chest x-ray came back clear - GREAT NEWS! Dr. started him on four new meds (on top of the fifteen or so he already takes!). The new ones are steroids and antihistimines (nasal sprays, breathing treatments and one pill). He said to try these and hopefully we can get everything under control. He's had a couple of episodes today, but we were able to stablize him and now he is resting. It just comes on so fast, out of nowhere. He will be doing great and then the next second, he's choking and gagging for two hours straight! Glad it's the weekend and Trey will be home. Unfortunately, we have no nursing, so it will be an exhausting one to say the least. But, if we can keep Nate home and out of the hospital, we will be VERY happy!!!

Please continue to pray. Thank you!
Jennifer

Just talked to the Dr.'s office

Mobile x-ray coming out to the house, possibly going to try steroids first before admitting to hospital. Will keep updating.

Nate Update

Looks like we are going to have to admit Nate to the hospital today. He had a rough Easter Sunday, with allergies that just overpowered him. We were able to finally stabilize him. Dr. recommended some minor changes in meds, O2 and breathing treatments and they seemed to keep everything under control (for the most part) through the week. Last evening he had another episode and now is running a fever, with thicker yellow secretions. He is doing okay at the moment, but he's up and down. We have no nursing over the weekend and think it's best to go ahead and have him admitted today, before he gets into real trouble. We're waiting on the dr. to call us back. He's already on tons of breathing treatments, allergy medicine, etc. and nothing is really working. He will probably have cultures, x-rays and blood work to determine what's going on and make sure there is no infection or pneumonia. Hopefully, it's nothing serious, and they can give him something to get his secretions under control and we will be back home very soon!!! We will keep you posted. Please pray. THANK YOU!

Jennifer

The Boys

Owen "reading" to Nate

Owen hanging out with Nate watching TV

Owen Reading National Geographic

He loves to look at all the pictures!

Owen Playing the Harmonica for Nate - Youtube Video

http://www.youtube.com/watch?v=7Qb9oKcYs5Y

Amy & Daisy

Nate and Owen Have a Cousin!!!

We are so happy to announce that Aunt Amy had a baby girl, Daisy Michelle Russell! Nate and Owen have a cousin and it's a girl! We needed a baby girl in the family! Trey is working on getting photos set up so you can see the new addition to the Russell family!

Owen Helping Nate Play the Piano - Youtube Video

http://www.youtube.com/watch?v=0QlH_ntw7SQ

Update

I wish I'd had a camera last week at school!!! We took Nate to class in his regular wheelchair, thinking the gym wouldn't be available to drive his power chair. But it was. First, he enjoyed hanging out in class for awhile and then we went down to the gym anyways to play and run around. We played red light/green light and "ran" around cones with the kids as they followed. I was exhausted :) ! Then his little friend Emily wanted to push him. She took him all around the gym and about five other girls helped and followed. Everyone wanted a turn, but Emily took charge. She's kind of fond of Nate and Nate really likes her as well! She always helps him color in class. So, it ended up being a good thing we weren't in the power chair. He had so much fun!

He's been doing great and staying well - Thank God! Especially, since Trey and I just got over a NASTY stomach flu. So far, neither of the boys has gotten it.

Owen is growing up so fast - saying new words every day! All of sudden it seems to have clicked. He of course is still speech delayed, but he's doing so much better. I think going to Mother's Day Out has really helped him, although he's had a hard time adjusting being away from Mom and Dad.

He is the best little brother to Nate. He will initiate doing things with Nate - push him in his wheelchair, brings things over for him to feel, reads books to him, and helping him play piano (video to be up soon!). He did the sweetest thing the other day. He was leaving with Gammy and giving Trey and I hugs goodbye and I said can you give Nate a kiss on his leg (he was in his wheelchair). He went up to Nate, picked up one leg and kissed it and then picked up the other leg and kissed it, then ran off with Gammy. Melts my heart!!!

LOVE LOVE LOVE Our Boys!! Thanks for checking in!

Jennifer

Owen Loves Nate's Closet

Owen is in a stacking phase. He loves Nate's closet because it's full of boxes and other things to play with!

Nate's Valentine's Party at School

What fun! Nate went to school yesterday for about an hour while they passed out Valentine's and did other Valentine's Day activities. He had the best time! He was Mr. Popular (especially with the little girls) :) ! Enjoy the cute pics!

On another note, Owen woke up sick this morning. He has a dr. appt at 2:00. Hope it's nothing serious, just a yucky cold, but want to make sure before the weekend (and Trey goes out of town for a couple of days next week!). Please pray that Nate doesn't catch this and Owen gets over it quickly! Keeping them separated is TOUGH!

Thanks for checking in!

Jennifer

Hangin' out in the dryer

I guess this is how Owen helps Jen empty the dryer & fold the clothes!

Nate Has Eye Glasses!!!!

Not that we would ever want him to have bad eyes, but HE LOOKS SO CUTE, SO MUCH OLDER AND SO DISTINGUISHED :) !!!!

When Nate has been communicating with his eye gaze, he would go to "my eyes are bothering me" a lot. I thought it was probably dry eyes or his eyes were getting tired from using the eye gaze or that it was hard on his eyes. Denise, one of his speech therapists, suggested we might take him to the eye dr. just in case to make sure his vision was okay. I really wouldn't have thought about this (don't know why, just thought a six year old would have healthy eyes ????). Turns out, Nate was right on and so was Denise. He is near-sighted and has fairly bad eye sight. Poor thing! So now it's like he's seeing everything for the first time! CLEARLY! We are so excited and Nate is too. He has been taking it all in today and you can really tell a difference!

Snow, snow, snow

We had another big snow storm here and the boys have loved it! It's affected our nursing situation, which isn't fun, but otherwise, everything is great. I built another snowman for Nate outside his window and we been out two days in a row to play (maybe tomorrow too). Nate loves being outside in it and watching Owen sled and roll around. He also likes throwing snowballs at him! Good times!

Update

Thanks to those of you who voted for the Gwendolyn Strong Foundation. They came in 6th place and won $100,000 for research to find a cure for SMA!!!

Nate has been doing great. Only those two incidences (the plug I mentioned earlier and one morning when he struggled quite a bit). I've been keeping a close eye on him and we've been taking it easy to make sure all is well and he's not getting sick. So far, so good!!

Chase Community Giving Contest

Help raise money for SMA research!!!

PLEASE go to www.gwendolynstrong.com and follow the instructions to vote for the Gwendolyn Strong Foundation on the Chase Community Giving Contest. The Top Prize is $1 MILLION DOLLARS and the ENTIRE amount will be donated to SMA research!

The deadline is Friday, January 22nd, so don't delay!

Jinxed it!

Too much talk about how well Nate has been doing! Yesterday, out of nowhere, he got a mucous plug. Luckily, I was standing right there and noticed him choking right away. He turned blue and wasn't making any sounds. We were able to turn him quickly, cough him with the cough assist, lots of O2 and had the ambu bag ready to go. Since we were able to catch it so early, he recovered quickly. THANK YOU LORD! So, I guess this was a "wake up call" from Nate and God to keep us on our toes, not get too comfortable, and remember how fragile our little boy is. How can a boy be so fragile, but yet so "strong"?

Jennifer

p.s. He's doing just fine now, just one of those things that happens with SMA kiddos. Plugs. HATE THEM! I think they are more dangerous than an actual illness.