Nathan's World

Friday, October 26, 2007

Pics of Nate Reading with Ms. Stephanie and Sleeping Soundly with His Favorite Puppy

Pictures of Owen in His New Chair and He's Smiling!

We love this chair! Of course, yesterday on the news, the top story was that this chair has been recalled! But, we will never leave him unattended while sitting in it. We will use it only for a little bit at a time and when he is sitting up on his own, there won't be a need for it. I guess some kids have fallen backwards out of it and had skull fractures. I just don't see how this can happen if a parent is right there with the child!

Thursday, October 25, 2007

Nate is doing better! We stopped the Tobramycin and we can see a dramatic difference. He still has some slight wheezing and a low grade fever. We will find out the culture results probably early next week and hopefully nothing will show up. Then we will know for sure that he was having a reaction to the medicine.

Nate's power chair is in the works! FINALLY! Permobil is getting it together and we hope it will be delivered within the next couple of weeks. It has been sooooo long since he's had his chair! This one will have a vent tray, so he will be able to have his bi-pap on, which means he can drive at any time. And, the electronics on his new chair should be more suited to his needs and easier for him to drive. I can't wait!

Owen's 2 month check up went really well. He's 15 pounds 9 ounces!!!! 23 and 3/4 inches long!!! He got four shots and didn't have that bad of a reaction. Slept a little more and that's about it. We will go back when he's four months old. Hopefully, no one will be seeing the dr. any time soon and we will all stay well during the winter months!

Tuesday, October 23, 2007

More Pictures of Owen

We'll get some pics of Nathan soon also. He hasn't been feeling well this last week. We started the Tobramyacin again and he had another reaction - desatting, thick secretions, and overall he's just not the same. So we stopped it yesterday and we've already seen some improvement. He's been running a fever some also, but we hope this is due to teething. Trey took a culture in to be tested to make sure there is no infection.

We received the Echo results and his heart is NORMAL! Good news!

Not much else going on, just hanging around the house. Owen goes in for his two month check up today. Hopefully, he'll get a good report. We know he's gained a lot of weight, that's for sure! He's a big boy! And HE'S SMILING! It's too cute! Haven't been able to really catch it on camera, but hopefully we will soon.

Please keep Nathan in your prayers, as we hope he is not coming down with something.

Thanks for checking in.

Jennifer

Wednesday, October 17, 2007

Sweet Owen

Monday, October 08, 2007

Yes, We Are a Divided Household

But, guess who prevailed - GO SOONERS!

Friday, October 05, 2007

Friday, October 5, 2007

Nathan has lost his two bottom teeth! He still doesn't have his top front teeth, although one is coming through slowly. And the back teeth are slowly coming in also. We went to the dentist awhile back because we were concerned that none of his teeth were coming in (except for the few on the bottom that came in when he was very young). It is common for children who don't get oral stimulation or eat by mouth for their teeth to take a long time to come in. He said the only way to fix it would be surgery which is, of course, not an option! So, our speech therapist recommended a spin toothbrush and I've been using that for awhile and it apparently did the job by thinning out the gums and helping the teeth break through. The first bottom tooth he lost, was literally "lost". We just noticed it was gone. So either he swallowed it or it fell out somewhere. But the second one we have and will save it. Nate will be getting a visit from the tooth fairy! How cute!

We went to have an echocardiogram done this week to check his heart. This was merely a precaution to check for pulmonary hypertension. Some kids who have compromised respiratory problems can develop it and we want to make sure Nate has a healthy heart! No word on results yet.

He's been doing well and adjusting to having a brother. He's so patient and tolerates Owen's loud cries and screams. Sometimes, he even thinks it's funny! It's amazing the resemblance between the two of them. We are looking forward to the months to come when Owen gets more active and Nate can enjoy play time with him.

More pics of the boys will be coming soon.....

Jennifer

p.s. On a side note, SMA will be highlighted on the upcoming episode of "House", Tuesday, October 9th. Garrett Lerner, father of Zeke Lerner (Type 2, 7 years old), is a writer on the show 'House' and has written spinal muscular atrophy into an episode of the show that will air on Tuesday, October 9th (9 pm on Fox). In conjunction, the producers of 'House' have organized a publicity event on Monday October 8th in which the entire cast will participate and attempt to raise awareness for Families of SMA. Pretty cool, huh???

Wednesday, October 03, 2007

Pictures of Owen in his swing

Thursday, September 27, 2007

We went to the walk last Saturday and it was a great turnout. Kyle and Friends raised over $3,000.00! Nate had a good time, but got a little hot and tired, so we had to leave early. Plus he was up 4 1/2 hours the night before!! He can be quite the night owl sometimes. He likes to talk to his night nurses and keep them entertained!

Nate started school this week. The teacher will be coming to the house and then by spring, we will start taking him "to" school, once the sickness season ends. He loves his teacher and always enjoys his school time.

Owen is getting bigger and bigger! And stronger than ever! It's amazing and such a blessing.

We have been bad about picture taking, but hopefully we'll get some this week and post them.

Not much else going on....Just adjusting to life with two kids and everyone seems to be doing well. That's all we can ask for!

Thanks for checking in!!

Jennifer

Friday, September 21, 2007

Needless to say, we're tired, busy and our heads are spinning with the addition of a new little one! But we are so blessed and so happy that Owen is healthy! Praise the Lord! He is a little miracle and a blessing from God above! But, of course, our hearts and prayers still go to Nathan. Mixed emotions to say the least - so happy about Owen, but we continue to be affected daily by Nate's condition. But we will NEVER give up hope!!! Nathan is our living angel and we cannot express how much we love him!!!!!!! We "banked" Owen's umbilical cord blood in hopes that he would be SMA free. We know Owen will enrich Nate's life in many ways, but you never know, his cord blood stem sells may even help him, heal him, cure him! We pray for that day!

Tomorrow, we will attend the SMA Walk in Sand Springs, and hopefully will have some new pictures.

Thank all of you for your thoughts, comments, cards, gifts, and most of all prayers! We are so blessed to have such a wonderful group of family and friends!!!!

Jennifer

Friday, September 14, 2007

Owen is SMA FREE!!!

We received the call this morning from Dr. Cyrus' office letting us know that OWEN IS SMA FREE!!!!!!!!

Thank you for all your prayers and support!!!!!

Trey

Tuesday, September 04, 2007

SMA Charity Event

Hi Everyone. There will be a SMA Charity Event, Walk Away SMA, on Saturday, September 22, at 10:00 a.m. All proceeds will go to the Kyle and Friends organization which solely benefits FSMA, SMA Support, and local SMA needs. Of course, we will be participating in the walk. You can also participate in the walk or sponsor Nate.

You can get more information by going to http://www.kyleandfriends.org/ and clicking "Events".