Nate In His New Swing

Picture of Nate with His Gammy

Nathan has a surprise to share...

We've been trying to find a creative way to share this news with everyone who keeps up with Nate via his blog. Given the events of this last week, we'll just go with this...

NATE IS GOING TO BE A BIG BROTHER!!!!!!

Yes, you read that last line correctly...we are EXPECTING! Another Baby Russell is on the way and is due to arrive around September 3rd...which is Labor Day.

Jen, who is 18 weeks along, has had a rough first trimester but is beginning to feel better. The wreck on Wednesday slowed her down some but everything is fine. After the accident, she had an ultrasound just to make sure everything was OK and the doctor's nurse pretty much told her that the baby was very well protected.

We are very excited about another child and feel that Nate will do great with a sibling. We've talked to him about the baby and showed him pictures of Jen when she was pregnant with him. You can tell by his expressions and sounds that he understands and is excited.

We'll continue to ask for your prayers as SMA is a risk with this child as well. We are both cautiously optimistic that this child will be SMA-free. God definitely had His hand in this exciting development and we know that we can handle whatever happens.

We'll continue to keep everyone updated on Nate and his new life as a Big Brother!

A scary afternoon...

On Wednesday afternoon, Jen, Nate and Sue were involved in a car wreck as they were coming home from Dr. Carey's office. They had run out to pick up Nate's Colymycin and as they were going through the intersection at 121st Street and Memorial, another driver turned in front of them. Luckily, Jen managed to swerve to the right otherwise it would have been a head-on collision. The other vehicle, a BMW 750, hit the minivan on the front and rear areas the driver's side.

The impact of the collision broke one of the wheels on Nate's Kid Kart, which caused it to tilt over to the left, and disconnected the cable from his BiPAP to the BiPAP battery. When Jen turned around to check on Nate, he was totally askew...his head way over to the left and his arms and legs were all out of position. Because the battery cable was dislodged, the BiPAP was not working so they had to use the ambu-bag on him to keep his saturations up. Several witnesses stopped and helped as best as they could until the Bixby Police, the Bixby Fire department and EMSA arrived on the scene. Luckily, it took them less than 5 minutes to get to the accident and they helped Jen & Sue stabilze Nate. Once they got his BiPAP back on, he calmed down and the Paramedics were able to do an assessment on him.


Since everything checked out OK, we made the decision to transport him home instead of going to the ER at St. John. The Fire Dept. and EMSA were great since they loaded Nate, still in his Kid Kart, into the back of the ambulance then took him and Jennifer to the house. The next morning, the mobile x-ray service came out to the house and took about a dozen x-rays to make sure there were no fractures. The good news is that no one had any fractures!


Jen and Sue are pretty sore and Nate seems to have fared the best. I think that since he is so hypotonic (floppy), he just got jostled around by the crash while Jen & Sue "tensed up" right as it happened. His back seems to have been bothering him a little bit over the last couple of days but other than that he is being his normal self.


Here are a couple of pictures of the van:

Once again, the Big Guy Upstairs was watching over our family. It is truly amazing that everyone is OK and that no one was seriously injured in the collision. We'll keep you updated on how everyone is recovering...

A Busy Couple of Weeks...

Well, it has been way too long since we posted an update so this will be a long one...

After posting that things have been going great for Nate, he had a couple of episodes in the middle of the night where he has desatted while on his BiPAP and we had to use the ambu-bag on him. We're not sure why these "crashes" happened other than he probably had a mucus plug or too many thick secretions that blocked his airway. Luckily the "bagging" broke up the blockage up and got his oxygen level back up to where it needed to be. He recovered quickly and doesn't seem to be sick. We went to see Dr. Carey the morning after one of these episodes and he thinks that is what happened also. Nate received a great report from Dr. Carey and he was very impressed at how well Nate was doing and how good he looked.

We've had some nursing problems and had a lot of gaps in coverage. Of course, these episodes happened on nights when we did not have a nurse. It takes a toll after awhile, but we're trying our best to work it all out.

We have had a lot of company. Nana and Wayne came up the weekend of March 10th & 11th. Nate always loves to see them! Katie, Craig and their three kids (Sarah, Alex and Ryan) came to see us last weekend on their way home from Colorado. We had a great time and Nate enjoyed seeing the kids. Here is a picture of us celebrating Ryan's birthday...he and Nate were born exactly 6 months apart - 3/3/03 & 8/3/03.

Now that the weather is warming up, we are trying to get out of the house more. The nurse and I took Nate to the zoo last Thursday and we were there almost three hours. I was worn out! Nathan had so much fun and we were able to see almost all the animals. We also had another outing where we went to Incredible Pizza and then to Lafortune Park to feed the ducks. Tons of ducks just came right up to him! He loved it!

On Sunday we were at WalMart and found a swinging bench for the pool deck. Nate has gotten so big and heavy that it is kinda hard to get him in & out of his swing. While we were in the Garden section, we found a swinging bench that will fold out flat plus has an awning on it to block the sun. This will work perfectly for us to build a base for Nate and allow us to lay him out on it when the weather is nice. We'll take a picture and post it later...

This week is spring break, so no school. Hopefully, we will have a get together with the Gundys and the Nelsons for a play date since we haven't seen them in awhile.

Thanks for checking in!

Jennifer & Trey

March 8, 2007

We are doing great around here. Finally, some warm weather has arrived and all the illnesses have subsided. We have been getting out a lot more and Nate is loving it!

Nate is finally enjoying school. No more crying fits or tantrums! He learned about bugs this week so, that's why Nate is holding a ladybug in his hand. In April, we will start taking him to school once or twice a week instead of the teacher coming here. We are hoping the "sick" season will be over and it will be a safer environment. Of course, the nurse and I will stay with him the entire time at school. I'm really looking forward to it!

Nate has an appointment with Dr. Carey tomorrow. He hasn't been to the Dr. since his hospitalization in November. We've had to cancel two appointments due to bad weather. Hopefully, Nate will get a healthy report.

Jennifer

Trip the the Dentist

Today was Nate's first trip to the dentist. Jen and I have been a little concerned that only 6 of his bottom teeth have come in so we scheduled an appointment with a dentist who specializes in special needs patients.


Dr. Graham was great and Jen & I could not have been more pleased with the visit. He spent a few minutes looking at Nate and then spent the next 30 minutes just talking with us. He asked a lot of questions about Nate, SMA, his life and his medical care. Basically, he said that we should just continue to be patient and wait for his baby teeth to come in. He did not see any cause for concern at this point. He told us that he was going to call a few oral surgeons to get their thoughts and that he would call us back later that afternoon. We were pleasantly surprised that he called back less than 2 hours later to let me know that they agreed with his assessment.


After the dentist, Jen & Sue took Nate to Incredible Pizza and he had a great time. He was full of smiles and made sounds throughout his visit. Needless to say, he was pretty worn outwhen they got home and he fell asleep almost immediately after they got him squared away in bed.


The Little Man is watching Veggie Tales as I type this update and we all look forward to a restful night.


Thanks for checking in on Nate...


Trey

2/24/07 Update

Here is a long overdue picture of Nate...

It was taken yesterday afternoon when he woke up from his nap and watched SpongeBob.

We have had a busy week and, best of all, Nate has been doing good. The weather finally warmed up some so Jen has been able to get Nate out for some walks and he even spent some time in his swing. He has been getting in his stander every couple of days plus we've been using the lift to get him in his KidKart. It is amazing how well he has adapted to the ceiling lift. We use it to get him in and out of the tub plus the PT & OT showed Jen how to use it to get him in & out of his KidKart.

We just weighed him the other day and he weighed 43 lbs! Yes, 43 lbs... He is getting so big that it is best for all of us to use the lift...much safer for him and much better on his parents' backs!

Nate's lungs have been sounding much better and while we are still fighting the Pseudomonas, he has recovered from the cold that he had a couple of weeks ago. He is also spending a little more time off his BiPAP. When we take it off, he immediately starts turning his head to the left and then to the right. His mood has been really good and, as always, he is full of smiles.

Thanks for checking on the Little Man!

Trey

Valentine's Day Photos

Even with his BiPAP mask on, you can clearly see that Nate's eyes do his talking for him...




Nate checks out SpongeBob and his balloons...


HAPPY VALENTINE'S DAY!!

Trey

Valentine's Day

On Valentine's Day, I would love my son to be able to give me a big hug and tell me he loves me. Or sit in my lap and cuddle with me.

Instead, I get "the look". The look is one I really can't describe. It is so intense it makes my heart melt and sometimes makes me cry. Nathan CAN give me a hug and tell me he loves me - He does it with his eyes and his soul.

That being said, I am reminded it's not important how I feel or what I need or want, it's what Nathan needs and wants. But, one thing I know is that Nathan is not lacking in the love or affection department. Trey and I never miss a chance to tell him we love him, kiss him, touch him, tell him he's the best little boy in the world and the strongest boy in the world. We couldn't be more proud of him or love him any more.

But, I have to say, it is so wonderful to get "the look" and know Nathan trusts us and loves us. And his eyes give us the biggest hugs we could ever ask for. I wouldn't trade "the look" for ANYTHING!

HAPPY VALENTINE'S DAY!!!

Jennifer

2/10/07 Update

The good news is that Nate has been doing better over the last couple of days. As you could tell from last Wednesday's post, he was feeling and sounding pretty bad. He still has some wheezing in his lungs but it is not as bad as it was earlier in the week. We have begun to taper the Prednisone and he finally finished the Augmentin. We'll continue to keep a close eye on him and are feeling pretty confident that his is improving. If all goes well tomorrow, we'll get him back in the bathtub and into his Kid Kart to watch a movie on the big screen.

The little guy is snoozing away right now. On Friday and Saturday nights, we don't have nursing coverage so last night he decided to see if he could stay up later than Dad. Well, guess what...HE WON! At 11:45PM, I gave up and went to bed while he just laughed and made sounds in his room. He was so wide awake when I called it a night that I didn't think he would be asleep for several hours. Luckily, he finally fell asleep sometime before 1:00AM when Jen got up to fed and turn him.

Thanks for checking on Nate and thanks for the prayers!

Trey

Nate's Illness Update

We got the final culture results and they were the same as the preliminary report. He is now on Cipro and Colymicyn and probably will take these for three months to hopefully get rid of this flare up of pseudomonas.

Today didn't start out too great. Nathan was running 101 temp and very congested. He was coughing a lot. He has a very weak cough, but he coughed the best he could. His heart rate was also very high. I called Dr. Carey's office and have not heard back yet. We are assuming he has caught a cold. I have had a cold for the past week and have been very careful not to give it to Nate, but there is only so much you can do. As we know, there is not much you can do for a cold, since it is a virus. We pray that his cold does not turn into RSV, which is very common with SMA kids. Right now, he's acting like a feels a little better. We gave him Motrin and his fever has come down some. We will do the vest and cough him regularly throughout the day to keep him as clear as possible.

We continue to pray for Nathan's healing and care for him in the best way possible.

Jennifer

Still Sick

Nate is still not feeling well. He didn't have a very good morning today. He was very cranky and has been running a low grade temp all day. His lungs sounded pretty junky this morning. This afternoon, his lungs sounded much better. And this evening he was in a good mood and seemed to be feeling okay.

I just got a call from Dr. Carey with the preliminary culture results which showed "few" pseudomonas. As some of you may remember, we found out Nate had this serious bacteria around his 1st birthday. At that time, he was treated aggressively with Cipro and Colymicyn. After that, he has been on a cycle of Tobramycin breathing treatments every other month to keep the pseudomonas at bay. It has been a very long time since any pseudomonas has showed up in any of his cultures until today. So, we will again take the aggressive approach and start him on Cipro and probably Colymycin again. The final culture results will be back Monday, which Dr. Carey said could possibly show more pseudomonas growing and maybe another type of more common bacterial infection or it could remain the same as the preliminary report.

Pseudomonas is a VERY serious, sometimes fatal bacteria that can settle in the lungs and be very hard to get rid of (as we are finding out!). We were so relieved when his cultures were coming back negative. But, here we are again. So, we pray the medicines rid his body of this bacteria and it doesn't continue to grow in his body. Another battle, but Nate, Trey and I are always prepared for the fight. We are optimistic that Nate, once again, will be healed.

Thanks for your thoughts and prayers, as they are always welcome and appreciated.

Jennifer

Called the Dr., Nate Still Wheezing

Well, Nate is still wheezing. There is definitely something going on with him - allergies, asthma, or an illness. He acts fine when he's on the bi-pap and his saturations are okay, but not great. At least, not as good as they have been over the last month or so. He's not running a fever, which is a good thing. He's in a great mood as long as you don't take the bi-pap off. When we take the bi-pap off for his bath, to change masks, cough him, get him in his Kid Kart, or for me to hold him, his oxygen saturations drop VERY rapidly and he cries and cries because he's uncomfortable and can't catch his breath. I called the Dr.'s office today and they wanted a nasal culture, which I just took in. Unfortunately, it takes awhile to get those results. They prescribed Prednisone and Augmenten which he will start today. In the past, when he's had these wheezing problems, the Prednisone seems to do the trick. So, for now, it's more rest and probably staying in bed for a couple of days until this passes.

Pretty Quiet Around Here - Which is a Good Thing!

It's been awhile since we last updated. Mainly, because not much has been going on. It's still cold here, so we've pretty much stayed inside. Nathan is doing well, although he has some wheezes in his lungs right now. If it continues, we will call the Dr.

School has started again (after the long holiday break and ice storm) and Nathan is still throwing his fits. Hopefully, he will get through this phase and start enjoying it. In the spring, when it gets warmer and all the cold weather illnesses pass, we will start taking him to school probably once or twice a week. The teacher gave us the days she thinks will be best for Nathan, as far as how many are in the class and the personalities of the kids attending on those days.

Since we've been mostly at home for the past couple of months, Nate has enjoyed his movies, playing games on his computer and doing a few arts and crafts projects. We've been out for a few drives also. He loves to go for car rides!

We have also ran into problems with Nate's power chair. It looks like we are going to have to order a whole new chair. The chair he has now does not meet his needs. It will not accomodate a vent tray (which is a necessity, since he is on his bi-pap almost all the time); and, the electronics are all screwed up because of how they originally configured the attendant drive, Nate can only drive in two speeds and has to work too hard to make it go. So, needless to say, we've had a chair for almost two years that was never made correctly. We've always known there were problems, but we relied upon the "experts" to design his chair properly. We finally came into contact with a great sales rep who "knows his stuff" and has helped us tremendously. Now, the battle begins with returning the chair to Apria Healthcare and our insurance purchasing a whole new chair for Nathan.

We are looking forward to spring and getting Nate out for walks, going to the park, the zoo and all that fun stuff!

Thanks for checking in!

Jennifer

Holland

Yesterday I was reading Directions, a magazine published by Families of SMA, and came across the article "Celebrating Holland". It is the follow-up to another article, "A Trip to Holland", in which a parent of a special needs child sums up a lot of the thoughts, feelings and emotions that Jen and I have faced as parents of Nate. Both of these are so amazingly accurate that I wanted to share them with all who keep up with Nate.

Trey

A Trip To Holland

A Trip To Holland
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability--to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this....

When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans...the Coliseum, the Sistine Chapel, gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland!"

"Holland?" you say. "What do you mean, Holland? I signed up for Italy. I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It's just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy - less flashy than Italy. But after you've been there for a while and you catch your breath, you look around....and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away, because the loss of that dream is a very, very significant loss. But, if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Celebrating Holland - I'm Home

I have been in Holland for a while now. It has become home. I have had time to catch my breath, to settle in and adjust, and to accept this different trip than I'd planned.

I reflect back on those years when I first landed in Holland and remember clearly my shock, my fear, my anger. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey, how much I have learned about Holland. But it has been a journey of time.

I worked hard. I bought new guidebooks. I learned a new language, and I slowly found my way around in Holland. I met others whose plans had changed like mine and who could share my experience. Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me and have taught me to open my eyes to the wonder and gifts to behold in this new land. We supported one another, some have become very special friends, and I have discovered a community of caring. Holland isn't so bad.

I think that Holland is used to wayward travelers like me and has become a land of hospitality, reaching out to welcome, assist, and support newcomers. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned the important lessons I benefit from today?

Sure, this journey has been challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced and less flashy that Italy, but this, too, has been an unexpected gift. I have learned to slow down and look closer at things, with a new appreciation for the remarkable beauty of Holland. I have discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special things that Holland has to offer.

I have come to love Holland and call it home.

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

Picture of My Sweet Big Boy- Mommy Loves You!!

And she loves your daddy too - very, very much!

Picture of Nate With His "Vest" On

For those of you who don't know, the Vest is a medical device that vibrates the chest and lungs to loosen up secretions. It is used primarily on people with Cystic Fibrosis, but works great for SMA children also. It has been a very necessary piece of equipment in Nate's care.

Pictures of Nate and Daddy

Thanksgiving Update (A few days late...)

Well, it is hard for me to believe that the Thanksgiving holiday is about over. The last couple of weeks have been pretty much a blur as we rushed from home to the PICU to work to the PICU to home then did it again the next day and the next and the next. It has been great to have Nate home from the PICU and we both believe that it has helped him improve.

As Jen’s last post stated, Wednesday was a tough day for the little guy and that continued on Thursday and into Friday morning. All day Thursday, he ran a fever, had labored breathing, had very congested nasal passages, needed supplemental O2 and just looked tired. It was strange that for most of the day, Thanksgiving Day didn’t really seem like Thanksgiving at all. It seemed like a regular Saturday for us in that we were so focused on taking care of Nate and worried about him. Nancy and Jeff came over late that afternoon to have Thanksgiving dinner with us. We enjoyed a catered Thanksgiving Dinner from Honey Baked Hams sent to us by Craig, Katie, Sarah, Alex & Ryan Lengyel. As we sat down to eat, it finally began to feel like Thanksgiving…THANK YOU, Lengyels!!!

Friday started off the same as Wednesday and Thursday…fever, labored breathing, junk in the lungs and the need for supplemental oxygen. About 1:00PM, we did a breathing treatment and coughed Nate. As we have said before, Nate’s nasal passages have been blocked up with mucus, drainage and bloody clots from having to suction that stuff out. While he was in the PICU, we decided to just leave his nose alone and not suction it out anymore in an attempt to let it heal. We have been doing saline treatments in the Nebulizer plus using a humidifier on his BiPAP to help moisten and loosen the stuff in his nose. While he has been at home, we have been using an Otoscope to look up his nose and could clearly see the clots and plugs.

After a couple of “coughing sets”, he had such little airflow out of his nose that we decided to use a suction device called a BBG on his nose. This device works much better than a Little Sucker or a catheter because of its design; it does not go very far into the nose and does not cause any irritation. Well, I squirted some solution into Nate’s right nostril while Jen suctioned the left. We were able to suction out a huge plug / glob of mucus / bloody clot. We quickly did the same thing on the right side and got out another one. You could almost see the relief in his face after those things came out!

The rest of Friday and all day yesterday, Nate was much more his normal self. He has been much more vocal, the airflow in & out of his nose and lungs sound much better and he has not needed any supplemental O2 at night. I cannot begin to explain how important it was that we got those plugs out of his nose. Those could easily have gone down his throat and blocked his airway again causing a repeat of November 5th. Additionally, the infection these could have caused if they had gotten into his lungs would have been terrible.

As I sit here writing this update, I can hear Nate making all kinds of sounds while he is back in his room with his VEST going. He is at the opposite end of the house and the baby monitor is not anywhere close to me. This is a great thing and something we have been looking forward to for several weeks!

As I reflect on recent events, it is easy to see a few of the things that I am thankful for:

NATHAN – It is hard to believe that a 3 year old could teach his parents, his family and his friends so much about Life. It is supposed to be the other way around but Nate has a special mission with his life. His strength and his spirit are so extraordinary and I am so very thankful that he is my son.

JENNIFER – I could not ask for a better wife and mother for my child. The love and care with which she approaches our life with Nate is amazing. It is hard for others to understand the physical and emotional toll that is exacted upon us each day as we care for Nate. This is not exactly the life we dreamed about and planned for but we would NOT trade it. Jen, you are the BEST and I am so thankful that you are right here beside me & Nate.

FAMILY & FRIENDS – Nate, Jennifer and I have the BEST SUPPORT SYSTEM one could ask for! Your love, concern, actions, thoughts and prayers have been so important to all three of us. We cannot begin to THANK YOU enough for all that you have done and how much it has meant to us over the last 3 plus years.

I hope all of you had a great Thanksgiving and I thank you for checking up on Nate!

Trey