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)

Happy Belated Thanksgiving!

We had a good Thanksgiving. Kind of quiet, tons of food and of course lots to be thankful for. First and foremost, we thank the Lord for the life he has given us. We are so blessed!

Nate had a chest x-ray and it came back clear. We stopped the Atrovent (which is the extra breathing treatment we had been giving him). It really was helping him but the Dr. said he really shouldn't be needing that treatment unless he was sick. So, that's why we did the x-ray to make sure his lungs were clear and since they are, he said it's more than likely allergies. We started him on Zyrtec two nights ago. So far, we haven't noticed much difference. He's been struggling a little bit more since we stopped the Atrovent. We can up the dose of the Zyrtec if needed and if that doesn't help, we'll call the dr. again.

Owen started feeding himself and he really enjoys it. Only it takes like an hour for him to finish his meal! And if you try to help him he throws a fit! Now, he wants to do it all by himself. It's so cute.

Hope everyone had a happy Thanksgiving and a nice holiday weekend! Thanks for checking in!

Jennifer

Owen - 15 Month Check-up

Owen had his 15 Month Check-up yesterday and it went well. He has gained 2 lbs. and 1 inch since his 12 Month Check-up. He now weighs in at 32.375 lbs and is 34 inches long...both in the 99th Percentile for his age!

Thanks for checking in on Nate & Owen and we wish everyone a HAPPY THANKSGIVING!

Trey

YouTube of Owen

Owen getting ready for bathtime and playing in Nate's room.

http://www.youtube.com/watch?v=T4eCC9kkCb0

You Tube Videos of Nate

We've been doing good here. Nothing too exciting, which is good I guess. Just gearing up for the holidays!!!

Here's some videos of Nathan -

This one is of Nate's room and all the equipment he uses. For those of you who have visited Nate, this probably won't be too interesting (although Nate is in the video!). It is meant more for those who have never been able to come over and for some Youtube subscribers to Nate's videos who have requested videos of all of his equipment and therapies.

http://www.youtube.com/watch?v=l5U5iQg-g4E

This is one of Nate off the bi-pap just hanging out watching Spongebob.

http://www.youtube.com/watch?v=R6KkkAT3UDg

This is of Nate on his computer playing connect four. He uses this for communication and some games. It's not that great of quality.


http://www.youtube.com/watch?v=Y2FAeuiNPm4

I'll post one tomorrow of Owen - it's really cute!

I know...

I know it's been forever since we posted. I'm planning on an update, pics and maybe some videos in the next couple of days.

Another One of SUPERMAN!

Owen - SUPERMAN!

Nate the SAILOR!!

HAPPY HALLOWEEN!!!!!

We had a GREAT Halloween! The weather was beautiful and the boys were doing good, so we were able to really celebrate. Our neighborhood is CRAZY on Halloween! It's like a big party - tons and tons of kids and parents everywhere. Nate and Owen loved it! They passed out candy and had a blast seeing all the kids in the costumes. I took Nate to a couple of houses close by to trick or treat. Owen was too busy enjoying hanging out in our driveway playing with the candy and watching all the kids. Everyone loved the boys' costumes and they got a ton of attention. There was a little boy who came up to me and said "Remember me, I'm in Nate's class". He doesn't live in the neighborhood but came to trick or treat here. I met his parents and they said that Cooper came home from school the day Nate was there and told them all about him. Nate made a big impact on the class. His parents were excited to meet Nathan. It was very touching. Get ready for pictures, pictures, pictures!

A quick update on Nate. He's been doing much better. He's been taking an additional breathing treatment medication and it seems to have really helped him. He's been enjoying school at home. We haven't gone to school in a couple of weeks and depending on sicknesses, we might wait until after winter to go again. Can't risk it! If it's nice this next week, we might make a trip to the zoo before it gets too cold and we're stuck doing things inside for a couple of months.

That's it for now - enjoy the pics and thanks for checking in!

(Some of the pics are far away - if you want to enlarge them, just click on the picture.)

Jennifer

Monday, October 20, 2008

Things have been up and down to say the least. We think Nate has been struggling with a cold, sinuses or allergies the past week. He has moments of really struggling, and then he'll be fine. Luckily, nothing has been serious. He's been running a low grade temp, lots of thick secretions and times of desatting. He's also been sleeping more than usual. So, we've been taking it easy. We did take him out Saturday after we made sure he was doing okay. It was a very important outing, because it was Owen's baptism! Very small private ceremony with just family. It was very special and touching. And it meant the world that Nathan could go and be there with us. After the baptism, we all came back to the house for lunch. Nathan had an episode as we were getting him out of his kid kart. It was a scary one, but luckily he recovered quickly and took a long nap and was fine the rest of the afternoon. Owen loved all of the attention and behaved all day! Unfortunately, our pictures didn't turn out too good. It was pretty dark in the sanctuary. I posted two of the better ones. One is with the Pastor who did the ceremony. He also did Nate's private baptism and he hadn't seen Nate since then, when he was 6 months old (we had just gotten Nate's diagnosis and it was a very emotional time). I was happy for Pastor Mason to see Nathan now - 5 years old and going strong!

Jennifer

Nate's Pumpkin

Nate has a program on his computer where he can choose exactly how he wants to decorate his pumpkin - paint or glue on; if he wants hair, ears, eyes, nose, etc.; what color he wants for everything; and, if he wants his pumpkin to be scary, funny, sad, etc. (he picked scary and funny). So, this is truly Nate's pumpkin!

October 10, 2008

Well, it's been a crazy week! Mostly for Trey and I. I got sick last Friday and was bedridden for a couple of days with a sinus infection and now Trey has a stomach flu/virus and is sequestered in our room bedridden. THANK THE LORD the boys have remained healthy! We've been very careful! So basically it's been a quiet week with not much going on since Trey and I have not been feeling well. I started feeling much better early in the week, so yesterday the nurse and I took Nate and Owen to the pumpkin patch. Unfortunately, I forgot my camera. They had lots of animals and of course tons of HUGE pumpkins. We bought a couple and will decorate them soon. Nate has a program on his computer where he can pick how he wants to decorate his pumpkin - colors, scary or funny, etc. We'll get a picture of it when it's done. Luckily Nate slept well last night (which hasn't been the case all week - he's been a complete night owl laughing and talking with our night nurse!), so we will be taking him to school today. This weekend not much will be going on other than watching OU/Texas - our house is divided on this one. I say GO SOONERS! Well, that's about it for now!

Jennifer

Videos of Owen on YouTube

Here are two videos of Owen. The first is of him walking into Nate's room and the second is of him pushing our kitchen chair around the house. Pretty funny.


http://www.youtube.com/watch?v=ZLn69N55sdg

http://www.youtube.com/watch?v=_ZFnB657S1I

Forgot to Mention.....

Before taking Nate to his first day at Kindergarten, Trey and I went to school to talk with the kids about Nate. We took his Kid Kart and some of his equipment to show them. Basically, we just explained how Nate is different in very simple terms, brought pictures of him and let them ask any questions (which was a lot!). It helped so much to introduce Nate and his situation first and then actually bring him to class. On his first day, we were walking down the hall to his class, and one of the kids yelled - NATHAN'S HERE! It was so cute! The teacher said the kids were so excited all morning knowing Nate was coming to class that day. They seemed to accept him although there was still some staring, which is normal. A lot of the kids said hi and waved to him. One little girl actually lives a couple houses down from us and already knew Nate. This class is very different from the class he has been in for the past couple of years. His other class was for special needs kids (although most were extremely mild special needs compared to Nate) and was more of a play class, which was good for him at the time. Kindergarten is very structured and more educational which is great for Nathan. But his time at school is more for social skills and being around other kids his own age, than education. The home bound teacher is focusing solely on education. I have requested the home bound teacher do more "kindergarten curriculum" and gear her time to more education based activities. He seems to really enjoy it! Nate loves to learn!

Owen Playing Outside

He likes to slide down the slide, but also likes to climb down the slide!

Sunday, Oct. 5th

A couple of weeks have passed, and a lot has been going on. First of all, OWEN IS WALKING! What a blessing! We plan on posting a video of him walking very soon.

Nathan has been doing good. We were able to get in the pool one more time last weekend and he loved it, of course! But, now Fall has really arrived (I think??). Nate hurt his leg in the stander last week, but fortunately, it was minor and he just needed to rest and take it easy. It is much better now. I think we finally got his power chair joystick problem resolved. The power chair has been an ongoing issue as far as getting the right joystick and his hand/arm situated properly. He has such little movement, you have to get everything just right for him to be able to operate it. With the old joystick, he could go forward and around in a circle one way and that was about it. We tried out a new joystick and adjusted his arm differently and he was able to turn, stop, go backwards and forwards. Now it's a matter of waiting to get the reps here to fix it and adjust it properly (which always takes awhile!).

We took Nate to see Veggie Tales Live last weekend and he really enjoyed it. The picture of him is when they first came out on stage. We left at intermission because we went to the evening show and didn't realize it was going to be as long as it was. Veggie Tales is one of his favorite shows so it was definitely a treat for him!

Also, Nate went to his first day of KINDERGARTEN! What a big boy! He did great. For the first few minutes he cried a little, probably because of stress and being in a new environment, then he fell asleep for about 10 minutes. After that, he really enjoyed it. They did a science experiment and math. He answered some questions for me and answered them correctly. What a smart boy! Hopefully, we will be taking him once or twice a week for about an hour until RSV/Flu season hits and then it will be strictly homebound schooling. We are still working on his computer so he can communicate and use it for education purposes as well.

Hopefully, we can take Nate to the zoo again soon before the weather gets too cold. That's about it for now!

Thanks for checking in!

Jennifer

Owen Update

I know it's been FOREVER since I posted, but really to me, it doesn't seem like it. Time just flies by and the next thing I know, a month has passed. I'll try and catch everybody up on the "goings on" in our family.

First, a short Owen update. He had his 1 year check up and surprise, surprise, he's HUGE! Height 33 inches, Weight 30 1/2 pounds, and head circumference I can't remember exactly, but all three are in the 99th percentile for his age! Luckily, everything is proportioned. He had some immunizations, screamed like crazy for about 1 minute and then he was fine. Everything else looked good and he's a healthy boy!

He is SO strong! It takes both me and Trey sometimes to hold him down to change his diaper. It's hard to believe a 1 year old can be stronger than 2 adults, but it is possible! I think God gave Owen the strength of a normal boy (and then some), and also gave him the strength that Nathan lacks! Owen is pure muscle and I get a work out daily caring for him!

He is starting to take a few steps on his own and can walk all over the place pushing something like his wagon or riding car. And he can walk fine holding one of our hands. It's so cute! It is facsinating to see the normal physical and mental development of a child. We don't take ANYTHING for granted. Every little thing he does is such a blessing! Unfortunately, we didn't get to experience these milestones with Nathan. Even the cognitive development, we really didn't see much of because he couldn't communicate verbally or physically with us. Now, we realize how much Nathan knew at such a young age, but just couldn't communicate it or physically express himself. But, Nate knows nothing different and he loves his life. We are so thankful to have the BEST boys EVER! They are very, very different, but so special in their own ways. Thank you Lord for blessing us and choosing us to be the parents of our wonderful redheads!

Since Owen is starting to walk (sort of), we decided it was time to go shoe shopping. We took him to Trippets, a children's shoe store that has been around forever (I even got my shoes there when I was a kid). He's not sure what to think of his new shoes. You can tell he has a hard time adjusting to the fact that his feet are heavier and tends to trip over his toes and drag his feet. But, he'll get used to them. Enjoy a few pics from the shoe store.

Next is a Nate update with pictures.

Jennifer

Nate Update

The last month has been a busy one. Nate finally started school; we think we've gotten the power chair figured out so he can drive it better; he's been enjoying lots of walks since the weather has been so nice; we took a trip to the zoo; and, he's been doing great in his stander getting in it almost every other day for about 30-40 minutes.

Unfortunately, pool season ended early this summer. It was a strange summer with lots of rain and then cooler temperatures came in earlier this year, so pool time was pretty limited. Thankfully, Nate loves his bath time (when he's feeling good) and is still able to get his water therapy and move freely. He has been able to be off his bi-pap some in the last month. Anywhere from 15 minutes up to an hour off of it. He's always off it during bath time and that's why sometimes he struggles in the tub, but for the most part he does pretty well. We usually have warning signs before the bath that it's going to be a short one - if he has a lot of secretions, a high heart rate, and if he didn't sleep very well the night before.

Trey had the day off today and we took the boys to Target to look at Halloween costumes and then to Incredible Pizza for lunch and played some games. Owen rode on the carousel and a horse - he LOVED it! We had a fun time.

Nate is doing GREAT!

Jennifer