Mother's Day

We went to church today and took Owen to Sunday School for the first time. Trey and I have members of Asbury for a long time, we used to go all the time before Nate's diagnosis. We were married at Asbury almost 9 years ago, both boys were baptized at Asbury, Nate's Memorial service was there and Owen has been attending Mother's Day out there as well. We had always wanted to be involved in the church before Nate was diagnosed, but obviously our obligations were to Nate and his care. I'm sure God understands :) So, this being the first Sunday to attend church in a long while, I think it appropriate that it was Mother's Day. Since I don't have many "church" clothes (or nice clothes for that matter, mostly Nike stuff!), I had to dig in my closet to find something to wear today. I still have it, the sweater I bought for and wore to Nate's private baptism ceremony about six years ago. Of course, that is what I wore today. I've posted a couple of pics from Nate's baptism and today with Owen. In the chair, I'm holding Nate's Mother's Day present he made for me in school (a nest with three eggs), and Owen's present to me, the flower made of his hand print. Also a couple of pics of us playing on Nate's bed this morning before church. I'm so blessed, but still so sad. I miss you Nate! Love you tons, Mommy

FSMA Donations

Also sending a BIG THANK YOU to those of you who have donated to Families of Spinal Muscular Atrophy in memory of Nathan. To find a cure would be the ultimate gift! So appreciative and thank you again!

Thank you, Thank you!

Nate's teacher came by yesterday to deliver this (along with the Mother's Day present below). A picture of Nate's class that was taken during the Valentine's Day Party. In the picture, she had printed "Our Loss, Heaven's Gain, Mrs. Lacy's Kindergarten Class 2010". Tears were flowing for a long time after opening this...So thoughtful!

A couple of weeks ago, Nate was having school here at the house with his teacher, Mrs. Lacy. I was asked to leave the room because he was going to make my Mother's Day present. She delivered this yesterday. Trey and I couldn't believe it. A nest, with three blue eggs. Pretty significant considering all my "bird signs" I've been seeing lately. Trey said the nest is Nate holding the eggs which are me, Trey and Owen. Sweetest present EVER! Of course, we both cried.

I have some wonderful neighborhood friends, some that I haven't even met yet, who gave me this beautiful necklace. It is Nate's birthstone (and Owen's also). I am looking forward to getting to know my sweet neighbors better and joining in a Bible Study they have every Wednesday. I can't thank them enough for this gift, I wear it all the time (and kiss it all the time!). So very thoughtful!

These are pictures of a Magnolia tree that was sent by Trey's friends at work. The marker reads"In Memory Of Our Sweet Little Angel Nate, Love Always". We planted it today. What a wonderful gift!

This arrangement was received today to me in honor of Mother's Day by our dear friends, Mike and Beverlee Rudberg, who live out in California. It's shaped like a rainbow and the card reads - "To an extraordinary mother. We wish you a rainbow of peace. All our Love". LOVE IT! So sweet - thank so much Mike and Beverlee!

I was also asked by some friends on my Facebook account if they could set up a FB page - Nathan Russell's Contribution Fund, which is a fund set up to accept donations to plant a tree in his honor through "Up with Trees" of Tulsa. It will be planted somewhere in town with his name under it. Again, I'm speechless by the thoughtfulness of everybody! Thank you Shannon and Jeri!

And thank you to Trey's friends at work for the gift cards to restaurants. Those have and will come in handy!

These are all the flower arrangements and plants we received before the Memorial Service and also ones that were delivered to the funeral home - Beautiful.

We have been overwhelmed and so appreciative of all the love and support we have received. And we are also so thankful for the gifts, the tons of food and flowers. These are just a few examples of what we have gotten. Thanks again everyone! Don't know what else to say but Thank You and We Love You!

Jennifer

My Dear, Sweet Husband

Trey and I are so much alike, but also so different. And that is a good thing. Since Nate's passing, Trey has been able to handle things I just couldn't bear to do, and I have been able to do things that he couldn't do. Luckily, we both agreed on the decision to let Nate go. No more suffering or struggling. It was the hardest decision we've ever had to make, but neither of us regret it. It was right and it was time. And we got to say goodbye and be with him when he took his last breath.

Right after Nate passed, as we were laying there with him. I had to get up. To me, Nate was gone. He was an Angel and I couldn't bear it anymore. I just went to the corner and cried like I never have cried before. Uncontrollably. Trey continued to lay with him and talk with him. Then he asked the nurse if he could give Nate a bath. I couldn't believe it. I wanted to leave, to me Nate was gone. But I stayed and watched him gently give Nate his last bath (something Nate loved - his baths). I cried and told Trey I was sorry I couldn't do it with him. But he said, Jennifer you bathed him every day, it's okay, I want to do this, out of respect for Nathan. I'm just in awe of him. All I wanted to do was leave, but when we did leave, all I wanted to do was go back and pick up Nate and run out with him. I felt like I was abandoning him, leaving him behind. But, it's not him, just his physical being. I had to keep reminding myself of that. And I couldn't bathe him and wanted to leave because I wanted my memories to be of him smiling and laughing and alive. I just couldn't handle it, but thank God Trey could and Trey did all those things I couldn't do.

Another example of that is the viewing and getting Nate's body dressed and ready to be put to rest. Trey wanted to make sure he looked "like he normally does". He just had to make sure before the viewing that it looked like our Nate. Again, this is something I just could not do. So, Trey went to the funeral home and made sure he was dressed in his Spongebob T-shirt, navy shorts, navy crocs, was holding his puppy (with only one ear) that he has had with him since the day he was born, and a blanket that Nurse Jenny made for him. He told me he looked like an Angel, and I didn't doubt it. He always looked like an Angel. I am so thankful that Trey did these things for me and for Nate.

Another example of what a wonderful, sweet Dad Trey is - he would say prayers every night with Nate before bed. I saw him praying to Nate the night he passed, and he has prayed the same prayers every night since he has passed.

Trey has been able to take Owen into Nate's room to talk to Nate. He's taught Owen how to say I love you to Nate's spirit. They have played on his bed. I have been able to do this a little bit, but not so much yet. In time, it will come. But for Trey, these are moments he treasures. I treasure them as well, but now from afar, as I just can't handle that yet.

So, let me say a big THANK YOU to my husband, Trey, who is the best Father on the planet!

Signs from God I've had in the past

I know, I've posted quite a few signs/messages since Nate's passing that I have received. But, God has spoken to me before Nate's passing (when I've asked him to). The first message we received, of course, was on the day Nate was born - the rainbow. We didn't know the significance of this until much later. At the time we just that it was a beautiful way to start the day when our first born would enter the world.

We started testing Nate at three months old to determine what was wrong with him. At 5 months old, we got the call. To come into the office to meet with the Dr. He didn't want to talk with us on the phone. We knew it was not good news. I went to pick Trey up at Thrifty, so we could all drive together to the Dr.'s office. Obviously, a complete wreck, I needed strength from God. While waiting for Trey in the parking lot, I asked for some sort of sign. I always seem to look up at the sky for signs. I got out of the car and looked all around, crying. Nothing, until finally I saw it - a big white Cross on the top of a church a couple miles down the road. I felt comfort, even in the midst of knowing we were about to get bad news. It was the perfect thing to see at the time. Knowing we would need God and Christ to give us strength to get through the days to come.

The second time, I asked God for a sign, was after a very scary episode of almost losing Nate a couple of years ago. He got a mucus plug. We bagged him, called 911, went to the hospital, but then were back home that same evening in the middle of the night. Thank the Lord! The next morning, as I sat outside having my coffee, I prayed. That event had scared me so much, almost losing him, I just needed comfort and peace. I couldn't relax. Then a beautiful white dove appeared on the house behind us. It stayed there for the most part of the day. I kept going out and seeing if it was still there, and sure enough, it would still be there. I was overcome by peace. Nate has a lot of birds that come to visit. We have bird feeders outside his window. All sorts of birds come - finches, sparrows, black birds, cardinals and doves (but I had never seen a pure white dove in our neighborhood before and haven't since). Just beautiful!

So, at times when I've needed those signs and messages from God, he's given them to me. Other times, throughout Nate's life, I didn't need them because Nate was doing well and God was in him, in his eyes, and in his heart. Now, after Nate has passed, I NEED them and am asking for them and I have received!

Sometime soon, I am going to post another miracle/blessing story about Owen. Some close friends and family members know the story. It is a very personal one, but one I want to share. Because, again, it was God's hand that brought us the miracle of our Sweet Owen. And just because we talk about Nate so much and what a blessing he was and is, doesn't mean we don't feel the exact same way about Owen Bennett! Love them both dearly :) Both Gifts from God!

Birds (Angels Playing)

Ok, at this point, people probably I've really lost it! As much as I love sharing Nate stories (both while he was here and after he passed), this blog also has another purpose - to document our memories, so we never forget certain moments. So here's another "moment" -

I was outside having my morning coffee, and two birds were playing and chasing each other right in front of me. I thought, that's probably Nate and another SMA Angel, flying and playing. I will think of birds as all the SMA Angels flying free and playing together. I went in to get my second cup of coffee, came back outside and look up to see a HUGE, HUGE group of birds flying over. But they weren't flying straight or fast. It was very slow, rhythmic, like they were dancing/swaying. Another beautiful site I will cherish. Fly free little man and play, play, play with all the other sweet SMA Angels - Have fun! Love you!

A Brother's Love

Two very touching stories about Nate & Owen...

Number #1 -- The morning after Nate passed away, Owen went into Nate's room as is his normal routine when he gets up. When Nate wasn't there, he didn't seem to know what to do but he just walked up to the bedside and patted the bed as if he was patting Nate. I asked him if he wanted to climb up on Nate's bed and he said "YES". So he climbed up then grabbed all of Nate's stuffed animals in a big bear hug and just laid there in silence.

On Monday night, we decided that we'd ask Owen if he wanted to take one of Nate's stuffed animals and start sleeping with it. We asked and and he said "YES". So we pulled him up on the bed and told him to pick one. You can probably guess what he did...he grabbed all four of them in a big bear hug and has been sleeping with them ever since.

Number #2 -- On Wednesday, I was going back to Floral Haven to settle up and Jen & Owen were in the office as I left. When I got back Jen told me the story behind the picture below.

As Jen was sitting at the desk, Owen walked over to the closet in the office, opened the door and pulled out one of the programs from Nate's Memorial Service. He then walked back to the desk, grabbed a blue pen and started trying to trace the outline of his hand on the program. Here is what he produced:

Nathan's Song

For those of you were attended the Memorial Service, and for those of you who couldn't, I want to give some background to the song that was played during the service called "Nathan's Song". Six years ago, during Nate's first hospitalization (and a scary one at that! This is when he had his feeding tube put in and had aspiration pneumonia - he was 7 months old), at St. John PICU, they had a CD player. Nate's love of music started at this point. We played a lot of music for him during the stay, but mostly a CD that the PICU had by Michael Card, called Sleep Sounds in Jesus. I loved this CD so much, that after Nate got home from the hospital I had to go out and buy it. At the time, all I could find was a double CD set which also included another CD by Michael Card called Come to the Cradle. This CD had a song on it called "Nathan's Song". Of course, the first thing Trey and I did was read the lyrics. We couldn't believe it - it sounded like it was written for Nathan! Then we listened to it - beautiful, beautiful song! Ever since then this song has had a special place in our hearts and of course, has always been, and always will be, "Nathan's Song". There was no doubt, when we were planning the Memorial Service, that his song would be played. The lyrics are as follows:

Welcome now, little stranger
To a world filled with wonder
Filled full of the fragrance
Of life's sweet bouquet
But dear one, take warning
That birth's like a morning
To a lifetime that flies past
Like one single day

Soak up like a sponge
All that's joyful and best
And squeeze yourself out
Upon those who are blessed
A God-given gift
Has been wrapped up in you
You show more of Him
Than I'll ever teach you

There are no words to thank You
For a heart that can see
And gaze in the face
Of this small mystery
You knit him together
In a most secret place
A most certain sign
Of Your wonderful grace

Welcome now, little stranger
To a world filled with wonder
To a world torn asunder
To a world that's in pain
My son, life's a battle
So you be a rebel
Stand ready to fight
And never stop loving the Light

Nathan's Rainbow (Again!)

Trey and I were sitting by the pool talking today. Very sunny day with a few wispy clouds. I looked up and said "Do you see that rainbow?" He did. Except this wasn't like any rainbow, it was upside down, shaped like a big smiley face. There were some wispy clouds around it. Just beautiful. Again, we said hello. I told him I loved him and blew him a kiss. It slowly disappeared and again, I thanked him and God. :)

More Visits/Signs from Nate

As you know, if you've seen the previous posts, I have received a couple special visits from God and Nate (the rainbow and meeting Gayle Crist at the nail salon). Here are a few more moments I want to share.

I'm always looking for signs. Mostly in the clouds or birds, but really anywhere and everywhere. I was sittiing outside the other night and asking Nate to speak to me. I was looking at the clouds. I thought, what about a cloud smiley face or a heart? I just stared at the sky. Then I starting thinking about possibly getting in the pool this week. Decided to call time and temperature to see what the weather was going to be. The advertisement sponsor for time and temp was Floral Haven Funeral Homes, where Nate is laid to rest. I smiled. Then when I hung up the phone, I again looked up at the clouds, and there it was a cloud shaped like a heart. Then I smiled big!

I talked to my mom the next day. She watches Boston Avenue Methodist Church service on TV. She had taped it and watched it on Tuesday. The service "just happened" to be about grieving. They played Amazing Grace during the service, which of course was also played at Nate's Memorial Service.

The most profound thing that happened to me, was yesterday. My body was tired, my mind was tired. But I went for a run anyways. I have run through my neighborhood, the same route, for years. There are a couple of spots that are my favorites. A couple of ponds that usually have some ducks and geese. As I approached one of these spots, a couple of ducks crossed the road. Then I looked to my left and there is this huge, beautiful SWAN! I stopped. It just looked at me and then walked over to me. I decided to go to the side of the road and sit down. It followed me and stood inches from me. It honked and honked (talked) to me, then it would just stare at me. It was so close to me I could've hugged it. I know swans are NOT people animals and they can be very mean, so I decided instead of trying to touch it, I would talk to it. (I know, go ahead and say it, I need to go into a mental instituation - HA). I talked, it listened, then it talked and I listened. I just took it all in, smiling and smiling. Then after awhile, I decided to move on. I said can you show me how you can fly? I wanted it to do something else for me before I left. I walked very slowly away from it, kept looking back (it's still talking to me this whole time). I got around the corner, and a neighborhood friend pulls up beside me. I tried to explain what just happened, then we just talked about Nate and how sorry she was, etc. I could see the swan from afar moving it's way toward me again. Before I knew it, there it was again, in the middle of the street, next to the van, standing inches from me, honking louder than before. Kari and I were stunned. Then it pecked my leg. I just laughed. Kari said "he doesn't want you to forget about him". I said "Oh, I won't". I then started home, running away from him, as his honks got louder and louder, I heard them for most of the rest of my run. I laughed all day and told Nathan how funny he is. And thanked him and God.

Some people might think I'm crazy, I'm making something out of nothing. Some people might call these incidents coincidences. If your eyes and heart aren't open to receive these special moments, you won't see them. I take time to look for them and I embrace them for what they are - plain and simple, GOD.

Flower Bouquet from Nate's Class

Nate's teachers (Mrs. Lacy and Mrs. Streetman), had the kids write down something about Nate. Then they put this beautiful arrangement together with the kids pictures and their messages. Sweetest thing I have ever seen. Here is what they said:

I liked his smile

I liked playing in the gym with Nate

You are my friend

I liked his eyes

I liked the big races

I liked when I met Nate

I liked giving Nate Valentines

He is cool

I liked playing red light/green light with Nate

I liked his blog

I liked his Spongebob shirt

He is fun

I liked playing with him

I liked reading stories with him

He is nice

I liked meeting him

He is a good friend

He is my best friend

I love you

I miss him

A wonderful message from Vin, a friend of Nate's

The morning of Nate's Memorial Service, as we were loading up everyone in cars, we look down on the driveway and see this. From Vin, who lives across the street and is also in his Kindergarten class. Who would think on this morning, I would smile. But Vin, you made me smile! If you can't see what it says clearly, just click on it to enlarge it. Kids are so special! :)

Nate's Yellow Ribbons

I want to thank everyone in our neighborhood, Twin Creeks III, (especially Beth, who I haven't even met yet!), for putting yellow ribbons on all the mailboxes (because Nate loved Spongebob so much), in memory of Nate. I KNOW we were put in this neighborhood for a reason. I could go on and on and why, and all the things that have happened, special kids and parents here in Twin Creeks 3, but it would take too much time. We love it here and so did Nate!

Nate's Sweet Hand

This hand mold of Nate's hand was made by the St. Franics PICU right after he passed away. It's unbelievable how real it seems. I loved to hold his sweet, soft hands. So glad we have this.

Remembering Nate

Last night, I really wanted and needed to see Nate before finally going to bed. As most of you know, we have posted numerous videos of him & Owen on YouTube over the last couple of years. This is the video that I watched. It was taken on a Sunday morning (March 22, 2009) as we were getting Nate squared away. We were getting ready to put his BiPAP mask back on but he was doing so well, we decided to keep it off for a while and just let him be. What we got was an amazing video of sounds, expressions and head movements. It is the essence of Nate...this is the Nate that I will always remember and cherish!

http://youtube.com/watch?v=qHgshwjhcUE

Our YouTube channel is "rer3family" if you want to see all of the videos.

Trey

Another remarkable sign from Nate and God

Yesterday, I went to have my nails done. I haven't done this in years. First I had my pedicure and was scheduled to have a manicure afterwards, but I needed to get back home to greet family from out of town. Decided I would come back later for my manicure. I was sitting in a chair waiting to have my nails done, next to two ladies talking. Most of their conversation was about God and Church. I had a feeling about the lady next to me. I can't explain it, but I wanted to tell her about Nate and ask her to pray for me and my family. I was included in some of their conversation, just talking about her Yorkie she had with her and nail stuff. When we got back to more talk about church, I asked where she attended. She said First Baptist Downtown. I told her my best friend since 2nd grade (Michelle Bauer Folks) went there (thinking no way would they know each other - it's a HUGE church), she said Oh, yes, I know Michelle, John, Charlie and Evelyn. We worked together at the church. She said she would tell Michelle she met me. I then told her that Michelle would probably tell her something else about me - the story of Nate. I then poured my heart out, all about Nate, his life, his passing - all to a stranger - crying and crying. She listended. Then she said, "You know what, I've been praying for you and your family already". Michelle had put us on a prayer list and the lady already knew about us and Nate's passing. Her name is Gayle Crist. She is a Stephen's Minister at First Baptist, Tulsa. We continued to talk and cry. Then as she left, she hugged and kissed me and told me she will continue to pray, just as she had been. Unbelieveable. Thank you again God and Nathan.

Nathan's Rainbow

The morning I was in labor, August 3, 2003, on the way to the hospital, there was a big rainbow in the sky. I haven't seen a rainbow since. This morning, I was sitting outside and it started to sprinkle, but yet was a little bit sunny outside. I thought, will there be a rainbow. I kept looking. A few minutes later, it appeared. I called Trey and Owen outside and we just stared at it. We said hello to Nathan and thanked him and God for the sign that all is well. Within a few minutes, the rain was gone and so was the rainbow. What a special moment that was. I pray as time goes by, Nate and God will continue to send us signs like this to help with healing.

Nathan's Arrangements

Viewing on Sunday, May 2, 2010 from 12:00 Noon - 9:00 PM at Floral Haven, 6500 S. 129th E. Ave., Broken Arrow, OK 74012, 918-252-2518 (www.floralhaven.com). Memorial Ceremony followed by Reception on Monday, May 3, 2010 at 11:00 AM at Mason Chapel - Asbury United Methodist Church, 6767 S. Mingo Road, Tulsa, OK 74133-3309, 918-492-1771 (www.asburytulsa.com).

In lieu of flowers, please make donations in Nathan's Memory to Families of Spinal Muscular Atrophy - FSMA Donations, 925 Busse Road, Elk Grove Village, IL 60007 or https://www.fsma.org/Fundraising/Donate

Nathan is at Peace

It is with profound sadness that we let everyone know that Nathan earned his Angel Wings Wednesday night at 9:45PM. He passed away with Jen & I at his side talking to him, letting him know that he had fought a valiant battle.

We are extremely thankful for all the thoughts, prayers and support that all of you have given Nate and our family. Please know that he is running around in Heaven with all of the other SMA Angels enjoying all the things that they could not do here with us.

Trey & Jen

Nathan to the hospital

HORRIBLE NIGHT!...Nate's worn out so we are transporting him to the PICU at St. Francis. Jen & Nate just left in the ambulance and I right behind them...will update when possible...NEED EXTRA PRAYERS!!!!

Dr. also not sure what's going on!

It's not an ear infection, doesn't seem to be allergy related, possibily bronchitis (although his lungs sound clear). Started him on a Zpack today. Mobile x-ray coming to do chest x-ray this afternoon. Nasal swabs were taken to check for bacterial or viral infection. If it's viral, obviously we just have to wait it out - bacterial, and hopefully the z-pack will take care of it. He is having these coughing spasms that last about an hour. Non-stop coughing. It comes and goes at random times of the day. It just wears him out. We use the cough assist and get some stuff out, but his coughing spasms continue. Sometimes, he needs supplemental O2 and his heart rate is way high, other times, his saturations remain normal during these episodes. He's never had anything like this before. I'm actually hoping it's bacterial form of bronchitis, so we will have an answer and the z-pack will work!!! It's so FRUSTRATING!

Prayers would be appreciated! Thank you!
Jennifer

To this dr. this morning

Nate had a really rough night. Don't know what's going on with him. He's on so many different medicines and nothing seems to be working. Dr. appt 10:00. Will update later.

Extra Prayers

Nate's allergies have flared up again and he has had a REALLY ROUGH day...tons of secretions, coughing, gagging, choking, etc. It was a repeat of what Easter Sunday was like except that his heart rate has been lower and he's not running a high fever.

We changed to a new antihistamine this morning so hopefully we'll start to see results soon. Until then, a few extra prayers would be appreciated!

Thanks,

Trey

PLAY BALL!

NATE PLAYS BASEBALL! He's in Challenger Baseball League, on a team called the "Jets". All kids have some kind of disability. Nate's team seems to have the most kids in wheelchairs. He had his first game yesterday morning It was a so fun! We met a lot of nice people and Nate enjoyed "throwing" the ball around and batting. So special! We'll probably post pics every week from each game. It was hard to get very good pics or a good video this time because Trey was dealing with Owen (typical 2 1/2 year old all over the place!) and I was helping Nate throw and bat.

Not knowing what to expect, since this was his first time to play, we learned a couple of things. Owen needs someone else to watch him, so Trey and I can both be with Nate. Trey missed out on a lot because he was chasing Owen around the whole time! Nate needs to be in his power chair, not his manual chair - it was very heavy and hard to move on the grass and dirt. Plus, he will love driving around the field! Next time, he will be in full uniform! Too cute! Hopefully, we can get some videos and pics of him throwing the ball with his teammates, batting and rounding the bases.

Nate Off His Bipap Today

He's lookin' good! And it's a great sign that he's a lot better when he can be off his "pappy"!

Owen Conked Out!

He just started using a pillow. Before you know it, he'll be in his big bed and the crib will be history. He is getting big for the crib, but it's nice to have him "confined" for now :) !

Candid photos

Nate and the Fish Hat from his teacher

It's for you...

Owen makes a fashion statement...

Brothers...enough said...

Owen in the Rain

Posters from his classmates

Last weekend, Nate's teacher dropped off some posters that his classmates had made for him. He usually sees his classmates a couple of times each week (either in the classroom or while driving his power chair in the gym). Since he did not go to school at all the week after Easter, they started asking about him and the teacher told them that he was sick...so the made him these "Get Well" posters...

Easter Weekend Pictures #2

Even though he wasn't feeling well, we got a couple of good pictures of him on Easter

The finishing touches on the cupcakes...

Easter Weekend Pictures #1

Bring on Easter Lunch!

Ready for the Hunt!

Doing Better

Nate's doing much better, but still not 100%. We've obviously stayed in all week, although he has had school here at the house. We'll continue to let him rest, recover, and get better throughout the rainy weekend, and hopefully next week, he'll be back to 100% and out and about at school, and possibly enjoying some nice weather outside!

It's an Ear Infection

Went to the dr. today. Found out Nate has an ear infection, most likely spurred on by all of his allergies. So, he added an antibiotic, which he will start today. I'm so glad we figured out what was going on and have all the meds to get him better! No hospital - yippee!

A long night followed by an OK Sunday...

Last night Nate fell asleep around 9:30PM but started having problems with his secretions about 12:30AM or so. Jen got up and suctioned him off & on until a little before 3AM. At that time, I got back up so she could go back to bed. He finally seemed to get them under control about 3:30AM or so and finally feel back asleep after being changed at 4:15AM.

He slept until 8:30AM and did NOT appreciate us waking him up! The morning was good and we were able to give him another quick bath. We also were able to get him up in his wheelchair for about 30 minutes so he got to watch SpongeBob on the big screen in the den.

This evening was OK...still has a lot of secretions and they can be pretty thick at times. The good news is that his lungs appear to be clear as we can hear good air movement in all lobes when we listen to him. The other good news for tonight is that Katie can cover the overnight shift. Jen & I are exhausted so we hope that he has another good night with her and we can get a little rest.

Thanks again for your prayers & support...please keep them coming!

A better day...

Nate had a better day today....he still has a lot of secretions but they have decreased compared to Thursday night and Friday. We suctioned out several thick globs today but the new medicines seem to be helping. We were able to give him a quick bath this morning and I know that made him feel better. He took a good nap and fell asleep around 9:30PM. Hopefully, he will have a good night and get some much needed rest.

We know that he is not out of the woods yet but he is slowly headed in the right direction. Thank you for all your prayers & support!

Trey

Good night...so far so good today!

The meds seem to be helping. A home health nurse is coming to draw blood for a CBC count to check for any infection, since he has been running a temp also. Then we will know if he needs antibiotics on top of everything else.

Staying Home for Now

Chest x-ray came back clear - GREAT NEWS! Dr. started him on four new meds (on top of the fifteen or so he already takes!). The new ones are steroids and antihistimines (nasal sprays, breathing treatments and one pill). He said to try these and hopefully we can get everything under control. He's had a couple of episodes today, but we were able to stablize him and now he is resting. It just comes on so fast, out of nowhere. He will be doing great and then the next second, he's choking and gagging for two hours straight! Glad it's the weekend and Trey will be home. Unfortunately, we have no nursing, so it will be an exhausting one to say the least. But, if we can keep Nate home and out of the hospital, we will be VERY happy!!!

Please continue to pray. Thank you!
Jennifer

Just talked to the Dr.'s office

Mobile x-ray coming out to the house, possibly going to try steroids first before admitting to hospital. Will keep updating.

Nate Update

Looks like we are going to have to admit Nate to the hospital today. He had a rough Easter Sunday, with allergies that just overpowered him. We were able to finally stabilize him. Dr. recommended some minor changes in meds, O2 and breathing treatments and they seemed to keep everything under control (for the most part) through the week. Last evening he had another episode and now is running a fever, with thicker yellow secretions. He is doing okay at the moment, but he's up and down. We have no nursing over the weekend and think it's best to go ahead and have him admitted today, before he gets into real trouble. We're waiting on the dr. to call us back. He's already on tons of breathing treatments, allergy medicine, etc. and nothing is really working. He will probably have cultures, x-rays and blood work to determine what's going on and make sure there is no infection or pneumonia. Hopefully, it's nothing serious, and they can give him something to get his secretions under control and we will be back home very soon!!! We will keep you posted. Please pray. THANK YOU!

Jennifer

The Boys

Owen "reading" to Nate

Owen hanging out with Nate watching TV

Owen Reading National Geographic

He loves to look at all the pictures!

Owen Playing the Harmonica for Nate - Youtube Video

http://www.youtube.com/watch?v=7Qb9oKcYs5Y