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!)