Bob the Builder Live

Friday we took Nate to see Bob the Builder Live and he really enjoyed it! It was a cute show.

Pics of Owen

A few pics of Owen playing with Charlie and Evelyn (my friend Michelle's two darling kids) and just a few other funny ones.

Valentine Pics

Nate opening his Valentines from the kids at school and presents from us and Owen opening his cards and presents.

Valentine's Pics

Owen tasting his bunny peep - he hated the feel and taste of it

Valentine's Pics

Nate tasting a Valentine sucker.

More Owen in the Snow/Sleet

Roxy wanted to play ball, but Owen couldn't bend down or pick up the ball. He also tried to climb up the slide which was total ice, so he slipped and fell. Didn't seem to bother him. He was so serious outside today. I think he was trying to figure out what all the white stuff was and also trying to figure out how to move in his eight layers of clothes!

Owen's Enjoying His First Snow (sleet) Sledding

Owen Enjoying His First Snow (well, it's really sleet!)

Preparing to go out - he couldn't sit up we had so many clothes on him so we had to dress him laying down and he could barely walk in his snow boots. He was so cute!

Surviving the Storm

We're staying in and staying warm! Sleet and ice and it continues. Thank the Lord Trey made it home from his business trip last night. He left last Friday for New Orleans and flew back yesterday. Made it to Dallas, but all flights to Tulsa were canceled. He DROVE in this stuff! But luckily, he made it home safe and sound. Which is a good thing, since the nurses can't get here and I would've been all alone. It was a tough weekend with Trey gone!

Nate is doing good. He still struggles some, but is doing much better. We even went out last week to the school to practice driving his power chair. He hadn't driven it in awhile and he has a new switch he had only used a couple of times, but he did GREAT!

A Couple More Pics

Christmas with Pop, Grandma Annie and Aunt Amy

We had another Christmas celebration. Trey's dad, stepmom and sister came up and we had a great time. Owen got a new basketball goal, which he loves (and he's a great shooter!). We brought Nate out into the living room and he really enjoyed it. He's been pretty much in bed the last week, except for his baths. He is doing a little better. We think the infection is slowly going away, but he is still struggling with a very stuffy nose. It affects him mostly when he's sleeping and the mornings are usually rough because it all builds up overnight. We've been able to keep it under control and it still hasn't gone into the lungs and he hasn't had any major plugs. Hopefully, every day he will continue to show improvement.

Here's some pics. Thanks for checking in!

Jennifer

Owen at the Park with Grandpa and Grandma Judy

Owen - He looks so old (What happened to my BABY!)

Nate Update

Nate's doing better - slowly but surely. He's been able to take baths and be off the bi-pap and tolerated it pretty well for the most part. He has school today and tomorrow (the teacher comes to the house), which he always loves. Trey's Dad and Step-Mom are coming in Friday so he'll get a lot of attention this weekend, which he also loves! But, other than that we're still taking it easy, staying in and waiting for this stuff to run it's course.

Thanks for checking in!

Jennifer

Nate Update

Well, Nate's not doing so good. He acts like he feels okay. And really no fever to speak of. But we're getting a lot of thick secretions from his head/nose. It's the same thing that happened a couple of years ago when he ended up in the hospital. So, we are being very careful. He had a Dr. appt. Friday. RSV and flu cultures came back negative. We're waiting on the bacteria culture. We think it's sinus related. He's on antibiotics and the Dr. switched Nate to Allegra instead of Zyrtec because we didn't notice any improvement from the Zyrtec. We're doing a lot of saline neb treatments to help loosen up the mucus. Luckily, it has all stayed in his nose and head and not gone down in his lungs. What we are trying to avoid is a plug blocking his airway which would end up causing pneumonia. They came to the house and did a chest x-ray yesterday and it looked good (other than a slightly enlarged heart, which we already knew about). He's happy and seems comfortable (except when he's plugged up and can't breathe through his nose). Just taking it a day at a time and praying he's gets over this quickly and it doesn't turn into anything serious.

SMA Research Update

Promising news from Families of SMA:

Families of Spinal Muscular Atrophy Funded Stem Cell Motor Neuron Replacement Program.

December 30, 2008.

FSMA has invested significant resources in alternative approaches that show promise to cure Spinal Muscular Atrophy rather than just treat the symptoms. In particular, we have invested $1.5 Million to develop a motor neuron replacement therapy for SMA, and we have made significant progress with our investment.

Our initial investment in stem cell research in 2000 funded efficacy studies using motor neurons from mouse stem cells. Results show that this therapy can provide benefit to rodents with motor neuron disease: a highly significant finding. In 2005, additional FSMA funding lead to the first, highly-pure therapeutic population of human motor neurons for cellular replacement therapy for SMA. This program is now progressing on the path to IND in collaboration with the biotech firm California Stem Cell, Inc. (CSC), and leading research centers at University of California-Irvine, and Johns Hopkins University. These motor neurons recently completed a series of critical animal safety studies prior to advancing into human trials for SMA.

Motor neuron replacement is at the leading forefront of current scientific knowledge, and as such is very high risk. However, this approach allows for the possibility of replacing lost motor neurons and so holds great promise for the patients and families in our community.

“FSMA provided the first financial support for my research program investigating the development of high purity human motor neuron populations from stem cells, and their application to animal models of SMA. This work has grown into a multi-tiered program that now involves several funding agencies, an industry collaborator, a clinical collaborator and FDA relations. I will always consider FSMA my partner in pioneering this technology, and moving it towards human use.” Hans S. Keirstead, Ph.D., Associate Professor of Anatomy and Neurobiology, Co-Director of the Sue and Bill Gross Stem Cell Research Center, University of California at Irvine.

Pre-clinical efficacy studies have been completed, demonstrating correct localization of CSC motor neurons in the ventral spinal cord, cell growth from the spinal cord toward the limbs, synapse formation with target muscle and functional reinnervation leading to restoration of limb function in animal models of motor neuron loss.

Results of the Safety Study for SMA Type I Clinical Application:The pivotal safety study, required to support an application to begin FDA clinical trials, has recently been completed. Although final data analysis is still in progress, there were no negative outcomes of this study, leading to the conclusion that motor neuron replacement will be a safe strategy in the treatment of diseases such as SMA characterized by motor neuron loss.

The purposes of this study were to evaluate the capacity of a motor neuron progenitor cell population to form tumors following transplantation into the spinal cord, to determine whether motor neuron transplantation would induce allodynia (increased pain sensitivity), and to evaluate the biodistribution and potential toxicity of motor neurons transplanted into the spinal cord. Results showed:-No mortality attributed to treatment with motor neuron progenitors occurred.-No tumors occurred that were attributed with the transplanted motor neurons.-No statistically significant differences occurred between the cell buffer (control) and treatment groups in the clinical allodynia (pain) assessments.-No toxicological profile differences between control and treatment groups.-No gross or histologic findings were attributed to the transplantation of CSC motor neurons.

Preparations for Clinical Trial Approval:“California Stem Cell has developed methods for the manufacture of clinical grade human motor neurons. It is the intent of CSC to gain approval to begin FDA-approved clinical trials for the use of these cells in development of a cell replacement therapy for SMA Type I. CSC is now preparing for a final FDA pre-IND meeting to take place in the first quarter of 2009, keeping us on track for a formal application in the second quarter of 2009 to begin a Phase I/IIA clinical trial in SMA Type 1.” Chris N Airriess, Ph.D., Chief Operating Officer, California Stem Cell, Inc.

Other preparations currently underway include: An external clinical trials coordinator has been engaged and medical community focus groups held to develop the clinical strategy for SMA trials; CSC manufacturing facilities and procedures have been audited for compliance with guidelines for clinical manufacturing.

Update on Nate's leg

The good news is that Nate does NOT have a fracture in his femur and his leg has been doing better over the last couple of days. It appears that it was actually his hip area that was the problem. Dr. Cyrus said that the radiologist reported some subluxation with his hip and this most likely was the source of the pain. Since Nate is non-ambulatory and his muscles are so weak, the connection between his upper femur and his hip has a greater possibility of slipping out of place because the muscles, ligaments & tendons aren't strong enough to keep everything in place.

We can tell that he is doing better because he is really back to swinging his leg when it's in the sling!

Thanks for checking on Nate and we wish all a HAPPY NEW YEAR!

Trey

Forgot to Mention....

On Friday night, Trey and I went to my Uncle Gus and Aunt Darla's house for my dad's side of the family's Christmas get together. We actually had an ADULT NIGHT OUT! Our night nurse, Jennie, was so kind to take time out of her schedule to work extra hours and watch Nate so we could do this. We also hired a sitter for Owen. We had a great time and enjoyed the adult conversation (at least I did - Trey gets a lot of that at work), good food and loved seeing my cousins and some second cousins that I had never met before. It was a special night. Unfortunately, we didn't get any pictures and it's too bad because I actually was dressed up and had makeup on! This was our third night out for all of 2008! MAYBE Trey and I can go out around Valentine's Day?? Our nights out each year are usually on our anniversary and one around one of our birthdays. Wish we could do it more often because Trey and I really need it, but it's very hard to do. But that's okay, we'll take what we can get and we love every minute of it. And if we have to sacrifice our time together for Nathan's sake, it doesn't matter - Nate comes first! And thankfully, we both understand that.

Update About Stuff and Christmas

I know it's been a long time! If nothing is really going on, I just forget about it and think there's not much to write about and when there is stuff going on and we're busy, I don't have time to do it! Also, as anyone knows who has a 1 1/2 year old, I'm lucky to sit down at all except when he's sleeping! Trey was off last week and is off this week so it's been really nice.

Let's see.....we really haven't done that much in the past month. Unfortunately, we've either had battery issues with Nate's bi-pap so we couldn't go out, weather issues, nursing issues, and now Nate's health issues. He's been battling a little virus/cold for a couple of days, but seems to be doing better now. Nothing serious. He hurt his leg in the stander (AGAIN) last week. It was healing and then it got tweaked again and now it's really hurting him. We just had x-ray taken and will get the results later today. The stander seems to be doing him more harm than good - it's so frustrating! We had plans to take the boys out a lot while Trey was on vaca - go to the mall, movie, bowling - but that didn't work out. We'll just rest and hang around - no big deal.

Before the Christmas break, Nate was doing really well in school. The teachers are very impressed with how much he knows. They love his personality. If he doesn't want to do something they want him to do, he will look at the ceiling the whole time and WILL NOT look at what the teacher wants him to. It's pretty funny.

We're looking into getting Nate a new manual wheelchair. He's outgrown his Kid Kart. I can remember when we got it when Nate wasn't even a year old and the rep said this will last until he's about 5 or 6. I thought oh, that's a LONG time. And here we are, he's five. Time flies! As always, it will take forever to get the new chair ordered and adjusted, but hopefully not too long!!

As far as Nate's communication device/speech therapy goes, the school had Tulsa University come out and do an assessment to see what Nate's needs are and how much time per week he will need speech therapy. Luckily, the assessment was correct in saying he needs at least 3 hours a week and that the therapists from school will require special training on the equipment Nate uses. The therapists from Bixby aren't used to dealing with someone with Nate's special needs. We have had to hire a private therapist through our insurance so that Nate would be getting some help while we were trying to work out all the details with the school. The therapists from school work all day at the school with kids mostly with just speech delays. And most don't have the time required for Nate's therapy (which has been an issue for me). The school is required to make sure Nate can communicate properly for education purposes. I hope the evaluation from TU will help in getting Nathan's therapy needs met through the school.

Owen has been doing great. He changes all the time. I just love watching him grow. Unfortunately, Owen is demanding, like all 16 month olds, and I feel like I don't have much time for Nathan. It's hard just to give Nate a bath every day, since Owen has to be watched 24/7. I guess I need to hire sitters more regularly!

And FINALLY... we all had a great Christmas! We spent Christmas day with my mom, brother, sister-in-law and the boys. It was a nice day full of cooking, eating, presents and having fun. The boys loved it. Then Trey's mom and stepdad came in town Saturday and we did it all over again! We also took Owen out to eat and for his first haircut - he was a very good boy! Unfortunately, Trey's dad and stepmom were supposed to come up a couple of weeks ago to celebrate Christmas, but had to cancel because Butch got sick. We look forward to their visit in January and celebrating Christmas one more time!

Next come the pics and more pics. Enjoy!

Thanks for checking in. Hope everyone had a very Merry Christmas!

HAPPY NEW YEAR!!

Jennifer

Christmas Pictures

More Christmas Pictures

A couple of Owen's presents

One of his favorite presents was plastic bowls from Uncle Jeff. He also got a tent from Gammy.

Serious Owen (he's always serious when he's eating!)

Owen's First Haircut!

Owen's First Haircut! (after pics)