Sesame Street Live

Saturday we went to Sesame Street Live at the Mabee Center. It was great! We were a little worried that Nate would be overwhelmed or scared, but he thoroughly enjoyed it! We had great seats on the floor right by the stage which were very convenient and Nate had no problem seeing the stage or the characters. They would come down off the stage and walk around and interact with the crowd, including Nathan as you see in one of the pictures. Also, before the show started, a man in the lobby introduced himself and asked about Nathan. He was a radio host for 96.5 and they were sponsoring the show. He and his partner were on stage at the very beginning to introduce the show and to our surprise, he said to the crowd - "The show's about to start but before we get going, I want everyone to say hello to my new friend Nathan down here in the 5th row." And the whole crowd yelled "HI NATHAN". And then Nathan waved back to everyone. It was the sweetest, cutest thing! Of course, it brought tears to my eyes.

Also, there was a little boy sitting right in front of us that kept staring at Nathan. He almost watched Nate more than he watched the show. During the intermission, his mother came to us and said my son wants to meet your son. She said her son was worried about Nate and wanted to make sure he was okay. We said of course you can meet him and told the little boy that Nate was fine and enjoying the show. After he realized that Nate was okay, the second half he seemed to watch the show more and not pay as much attention to Nathan. It's amazing how kids can be sometimes. We thought that was so sweet for such a little boy to be worried about Nate. We are used to people and kids staring at Nate, but for the most part kids are very receptive and they just want to know if he's okay or what's wrong. Once they have the answers, they accept it and it's no big deal.

So, needless to say, it was a very special day (for us and for Nathan)!

EASTER PICS!!!

EASTER PICS!!!

EASTER PICS!!!!

Nate's 1st day AT school

Nathan had a great time last Friday at school. It was a small class, which was probably a good thing, so Nate wasn't too overwhelmed. Sue (the nurse) and I stayed with Nate (since he is so medically fragile) and it was fun for us also! We will be going again tomorrow. This should be a bigger class. Hopefully, we will take him at least once a week, maybe twice. The teacher will still come to the house on Mondays with the speech therapist.

April 2, 2007

Nate seems to have fully recovered from the wreck. He was a little sore for a couple of days and just not quite himself. He's back in full swing and seems to be feeling great. Unfortunately, we still don't have a new wheel for his Kid Kart (it should be here today!!!), so we have been limited on what we do with him. We are able to get him in it, we just can't go very far. We were able to go across the street Saturday to our neighbor Olivia's 5th b-day party and Nate had a great time. He's also been enjoying his swing outside and getting up to watch TV in the living room. We finally got a rental van over the weekend so as soon as the Kid Kart is fixed we can get out of the house. We plan on taking Nate to his first day AT school on Friday. I'm so excited! I purchased tickets to Sesame Street Live today and I know Nate will enjoy that. We will be going to the show Saturday, April 14th at 2:00. I'm excited for that as well!

That's it for now! Thanks for checking in!

Jennifer

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.