Father's Day

We had a great weekend! Grandpa, Grandma Judy, Uncle Jeff and Aunt Bradette came over Saturday for pool time and steaks. Nate had a blast in the pool with everyone, as did Owen. Sunday, Trey held Nate and they both loved it! Then Nate spent some time relaxing in the recliner watching Spongebob. The portable lift has worked great getting him out in the living room.

Father's Day - what can I say about Trey as a father? Too many ways to describe what a wonderful father he is. I can't thank him enough for all he does, in supporting the family, helping with household chores, but most of all how he is with the boys. He is the most helpful, caring, thoughtful and loving husband and father EVER! I don't know how I would live without him - he is my rock! Thank you Trey for EVERYTHING! The love and devotion you have for our family is much appreciated and I think the world of you!

Jennifer

Busy Nathan

The last couple of weeks, Nate has been a busy boy! As you can see from previous posts, we had Pop and Grandma Annie in town for a visit and we have been practicing in the portable lift. Also Grandpa (my dad) and Grandma Judy came over (which they do every other Tuesday) and we all went in the pool. Nate loved watching Grandpa and Owen play! We also had another play date with my friend, Michelle, and her two kids and Stephanie (one of Nate's old nurses) stopped by to see him with her little boy. We all played in the living room and went outside to swing. It was so fun!! But the biggest day of all, was Nate's first trip to the movies! We took him to see Kung Fu Panda and were a little apprehensive about him sitting for two hours and wondering how he would handle the noise. But, he ABSOLUTELY LOVED IT! He laughed, made sounds and smiled throughout the whole movie! It was such a treat and is definitely something we will do more of, especially during the hot summer days.

Thanks for checking in!

Jennifer

I'm Holding Nate Again!

We got Nate's portable lift and were able to get him in the living room and I got to hold him!!! Actually, the day before we received the lift, I decided I wanted to try and pick him up and hold him like I used to (on his stomach), so we tried it. We brought the rocker/recliner next to his bed and I picked him up and was able to do it. But it was much easier to use the lift and hold him in the living room facing out and he can see what's going on in the room. Either way, I get to LOVE on him! It has been over a year since I held him and I have missed it so much. He definitely has grown in height and weight, and his head is much bigger too! Trey will get his turn very soon and we look forward to doing it more often.

A Visit from Pop and Grandma Annie

We all had a great time and the boys loved seeing Pop and Grandma Annie!

Nate Zooming Around

In my last post, I mentioned we haven't been able to get Nate in his power chair that much due to the weather. Well, we took advantage of the moderately hot weather this afternoon after we had major storms this morning, and got him out driving. Within 30 minutes, he was beet red (from the heat, not sunburn - we always use a ton of sunscreen on our redhead!). But, he really enjoyed it! So enjoy a few pics!

Jennifer

A Basic Update

Summer has arrived! And Nate has been doing great! Unfortunately, there have been numerous storms in the last month, so pool time has been limited. We took Nate to the mall last week and he loved it! I think he liked the glass elevator the best. He got a lot of attention from people, mostly children. It's interesting to see how children react to him. We've gotten everything from "He's wearing a vacuum on his face", "Was he shot?", (you can't help but laugh at comments like those) and the most basic "What happened to him?". It's easy to answer, especially to kids. We just say "He's a normal little boy, he was just born with weaker muscles than you that's all." To which most of the time, the kids say "Oh". Sometimes, the kids are a little more interested and want more details about his equipment, etc. and I just explain everything in very simple terms. We also had a lady and her two girls come join us for lunch because her girls wanted to meet Nathan. I always prefer it when people ask, instead of just staring, because I'm so proud of him! I love to share his story because he is such a special child.


Nate hasn't been driving his power chair that much lately. It's either storming or way too hot. But, we are going to try to take him to the school gym for the six weeks during summer school, so he can "go to town" in his chair. That way I won't have to stand right beside him and correct him all the time. He will have a better chance to just do what he wants and go whichever way he wants - which is mostly in circles (he thinks that is so funny!).


Owen had his 9 month check up last week. He's 26 1/2 pounds and 30 1/2 inches long. Needless to say, HE'S HUGE! Everything looked good and he got a good report. Obviously, he's one healthy little boy! He's crawling like crazy and standing, but not on his own quite yet. We've entirely babyproofed his room and put a gate in the doorway. He has lots of toys to play with in there, but what does he do, crawl to the gate and look out and cry! Oh well, at least he's safe in there when we are doing things with Nate.


I've been wanting to take Nate to the movies. Hopefully, in the next week or two, we can take him to the Kung Fu Panda movie. I don't know if he'll like it, because when he's in his kid kart, he wants to be MOVING, either in the car, or walking. But, if he's not happy, we'll just leave.


Enjoy of few pics of Owen - one of his big blue eyes, him trying to get to Roxy at the back door, and looking through the bars of his cell (poor little guy!).


Thanks for checking in!


Jennifer

Nate hits the pool!

One cool Pool Dude!



Owen keeps an eye on Nate...

Jen came up with a GREAT "MacGyverism" last night that allowed us to get Nate in the pool today. As I mentioned in my last post, we were going to wait until the portable lift was delivered before getting Nate into the pool. Last night, she came up with the idea to put his bath chair on the floor in his bathroom and use his regular ceiling lift to lower him into it. Then we would carry the bath chair to the edge of the pool, put on his BiPAP then get him into the pool like we normally would.

What a GREAT idea...It worked perfectly and as you can see from the pictures, he loved being in the water!

Trey

The pool is OPEN...

We fired up the pool heater last night and got Owen in for the first time this afternoon. I am pleased to say that he took to it like a pro...being in it did not bother him at all!

We'll be getting Nate in pretty soon too. The Portable Lift has been approved and will be ordered on Monday! He is just too big for us to carry to the Bath Chair in the pool so we have to go with a lift. We should have it within the next 1 to 2 weeks and then Big Brother will join Owen!

Expect more pool pics then!

Look who's standing...

Jen was getting Nate squared away the other day and turned around to see this...

Mother's Day

We all had a great Mother's Day weekend. It was also Trey's birthday, so lots of celebrating going on around here. I'm so proud and blessed to be the mother of two incredibly special boys. I couldn't Thank God enough for what he has given me in life - first and foremost, a WONDERFUL, LOVING family! I cherish every day of motherhood and look forward to the future with my boys!

Nana and Grandpa Wayne came in town from Dallas to help celebrate the weekend. It was beautiful weather, so Nate was out driving his chair and we went for walks. He's doing great! He was even off his bi-pap for awhile both days!

Jennifer

Owen Getting Splashed in the Tub

Nate's Trip to the Zoo

We took Nate to the zoo yesterday and HE LOVED IT! I don't think the smile left his face the whole time. As you can tell by the picture of him in the car on the way home - still smiling!

Funny Owen

Owen and Grandpa and Grandpa Reading to Nate

Nate at School

Nathan finally got to go to school last week, and there's only three more weeks left! Last year we were able to start taking him in April, but because of Nate's illness, we're a little late this year. Unfortunately, the night before, he was up FOUR HOURS talking and playing with his night nurse, so needless to say, he was exhausted for school, as you can tell by the picture of him SLEEPING, while a child tries to play with him. But, he was awake for some of it and enjoyed it. The teacher is still coming once a week to the house, but we will try and make it to school as much as we can for the final three weeks.

Pics of Nate

He's doing so much better!!! Thank you Lord!

Play Date with My Friend Michelle and Her Two Kiddos

My friend, Michelle, brought over her two kids, Charlie and Evelyn. We had a great time. Owen was in awe of Charlie. He watched him play and was literally in a trance observing him - it was the most still and quiet he's been in a long time!

Gammy and Owen

The Boys

Reflections

Heaven gained another SMA Angel the other day. Skylar, a little girl almost 8 years old with SMA Type I, passed away on Monday. As I was looking at her website and reading her family’s journal, I came across the following quote from Aron Moss that I wanted to share. I feel it is so true, not only for our SMA kids but for ANY handicapped child.

Every birth is a gamble. A soul enters the world innocent and pure. But it may not stay that way. This world is a maze of diverging pathways, both good and evil, and the choice is ours which way we go. Once a soul enters a body, it is free and therefore vulnerable to corruption. While acts of good elevate the soul, every act of evil makes a blemish on the soul.

Some souls are so lofty, it simply isn't worth the gamble. These souls are too precious to risk being compromised by life in a body. They are too high to come down to this world. But the other option, not to be sent down at all, to never reach this world, would mean that we would miss out on meeting these holy and lofty souls and hearing their message.

So these souls do come down. But in order to be protected from the potential evils of an earthly existence, they are sent down into a body that will not compromise their holiness. They enter this world in a form that is above sin, above evil. From a purely physical perspective we call them "disabled" or "handicapped"; from the perspective of the soul they are protected. They will never sin. Their sojourn in this world is often brief, and in terms of this world may seem sad. But they have retained their purity. And they have fulfilled their mission.

These special souls remind us that true love doesn't need a reason. We often love others for what they give us -- we love our children because they are cute, smart, and high achievers; we love our spouse for the pleasure and contentment they give us; we love our parents because they care for us. This is love, but it is not pure.

When a child is born that will never achieve worldly success, cannot provide the usual source of pride for his parents, all extraneous reasons to love him fall away and what's left is the purest love that there can be. These children are lovable not because of what they do for you, and not because of what they will one day become, but simply because they are.

These pure souls remind us what love should be. Only such a pure and holy soul can elicit such a pure and holy emotion. We can only stand in awe of them, and the parents and friends who care for them. And we can only thank them all, for giving us a glimpse of what true love really means.

Trey

Nathan Update and a Few Pics

Nate is definitely doing much better, but he's not out of the woods yet. He has had some scary episodes since being home from the hospital, but we have been able to stablize him. He'll be doing great one second and then start struggling. Still not sure if it's allergies or a cold, but we are so happy that we were able to bring him home and treat him here. He's much more comfortable and there's nothing they could do in the hospital for him that we can't do at home. You can tell he's feeling better when he's back to staying up for hours at night laughing and talking! We were finally able to get him in the tub Saturday for a full bath and he really enjoyed it and I know it made him feel better. He also drove his power chair on Saturday - it was so beautiful here. Then yesterday he had a scary 45 minute episode and so he rested most of the day. We will continue to take it easy and not overdo it to give him time to get back to 100% and ready for a fun-filled summer! It's almost pool time!

We were able to get a few pics of Nate without his bi-pap on yesterday. He's barely been able to be off it for even a few minutes - so this was also a good sign!

Thanks so much for all your prayers and support - it means so much!

Jennifer

Owen in His New Swing and a Couple of Random Owen Pics

Owen LOVED his new swing! He laughed out loud the whole time!

Sunday Morning Update

Nate is returning to his normal routine now that he is back home. Friday afternoon he slept for 3+ hours then was back asleep by 9:10PM and slept all night. Saturday morning was a little rough for him but once we did the VEST and suctioned out some of the thick secretions, he did much better.

The best thing was probabaly the full body sponge bath on Saturday afternoon! You could definitely see that he felt better after the bath and he started making more of his normal sounds. He only slept for 30 minutes yesterday afternoon because the dogs went crazy barking at another dog in the front yard and all the commotion woke him up. Needless to say, it was an early night for him and he was asleep before 9:00PM.

His secretions have thinned out and they continue to flow out of him. This is a good thing as they are not going down into his lungs. His lungs sound much better and we continue to do extra breathing treatments and extra VEST sessions to keep everything moving.

It looks like we're over the hurdle and we'll find out early this week if any other infections grew out of the cultures. We'll continue to take it easy and let him catch up on his rest as the whole experience was pretty draining on him.

Thanks for your prayers & support!

Trey & Jen