Almost Out of Here

It has been a very good day! My mommy tells me that I’m doing incredible and the doctors have told her if nursing was set up I could possibly go home some time next week. Then she told me that I shouldn’t get to excited about it because she and daddy have to finish there classes. Either way we should be going home in about 10 days! My mommy also said there will be nurses at home with us for a while, and I guess that’s ok, I just hope it will be just my family soon! Tomorrow I have my official swallow study, where they watch me swallow on x-ray, so wish me BIG luck!!!!!! Big Hugs and Kisses see you all soon Sky

Doing Great

Well this is day 5 down stairs and I’m doing great! They have taken out my pick line and adjusted me to a bi-pap machine. My blood work has been outstanding, and I’m able to work out and move allot more down here. I have OT/PT with my mommy everyday at least 2 times. My mommy and daddy have been in classes on how to care for a child with a trach and they are doing awesome! They gave me a bath this morning and did all of my trach care for me, instead of the nurses. Also my mommy has learned how to do suctioning, (YEAH) now I won’t have to wait to get the goobers out, she can do it. There’s lots more they will have to learn, but I’m sure they will do great! The doctors are working with me and my bi-pap settings, they think that I will only need to be on the bi-pap at night or during naps, that makes me very very HAPPY! Also this weekend I was having little tastes of food and when my mommy put the green beans in my mouth I swallowed them down! So Thursday I will have a swallow test done where they watch me swallow on an x-ray, so wish me luck!!!!! I sure can’t wait to start eating normally again. So all is going very well, I hope to be home in less then 3 weeks!!!!!!!! Thank You for all your thoughts, love and support Skylar

Graduation Day From The PICU

Today was a very very good day, I got to get out of the PICU and go to the 1st floor, where my mommy and I have a nice room with a big window to look out of. So far its been great, there are a few bells and whisles down here, but its nothing like the Picu. Although I will miss a few of my favorite nurses. But Im sure they will come see me at least once before I get to go home.

Bye bye vent Hello bi-pap

Today was a good day Skylar was taken off of the vent support and placed on bi-pap. Bi-pap is alot smaller as you can see from the pictures. And Sky took very well to it. With any luck Skylar will be out of the PICU Wednesday or Thursday.

Look How Strong I Am

They keep saying that Im not strong enough to do this and Im not strong enough to do that. Well I am strong enough and tonight I proved it. While mommy was walking my daddy, sister and brother to the truck tonight I pulled out my ND tube. This tube was placed past the stomach for my food. So I showed them, huh, not strong enough.... The bad thing is now I have to get another one, and it kind of sounds like it might be a pain to do. Sky

All Dressed Up And No Where To GO

I like this little bathrobe, it was a gift from Julie and her family in Texas. Its been the only piece of clothing thats touched my skin in almost 2 months. I feel like and look like a million bucks!!!! Thanks and God Bless Sky

One Less Tube and Swallow Test

Woo Hoo look at me, you can almost see my entire face. They took that icky NG tube out of my nose... It felt a little funny coming out. But I did very good with it, I only gagged one time. I feel GREAT guys!!!! Pretty soon this yellow tube will be gone too. I have to pass a few swallow tests. I took two tests today, and all I did was play with the food in my mouth (no swallowing today). But ya know what thats ok, its been a while since theres been anything good in my mouth, Ill get it in a few days maybe a week. But I will be eating by the time I go home! The fun thing is my mommy and I get to spend the weekend playing with all sorts of different foods. They want me to get use to a spoon again. So I get to feed my mommy, daddy, sister and brother. And if I want I can even feed myself a little bit. Mommy has to be really careful when I take a bite to make sure I dont gage or anything and she has to be standing by with suctioning. Either way its going to be fun and good for me to see that spoons are good things and not icky things like tubes. Well guys I best get to sleep Night Night Sky

My Favorite Nurse

My very favorite nurse Amanda, I just love her. She was always so nice and gentle. And she loved to play with me. She is what all nurses should strive to be. Thank You Amanda Ill be back to see you (but just as a visitor)!!!! Love Skylar

My Photos Are Back From Lynette

Arnt they awesome! we`are so Thankful that we were able to get these done. They are just so precious to us.

Love my New Toys

Thank You so much Auntie Julie and Family. I LOVE my new toys as you can see from the photo my momma took. I hope someday Ill be able to meet all of you and thank you for such a wonderful and thoughtful gift!!!!!

Bug Buddy Prayers and Thoughts

Hi guys! Being here this long I have met a few friends and I want to ask you guys not to just think of me today. If you could send a few extra prayers to my Bug Buddy Conner. He is a little guy who has really been going threw allot and I want him better too so he and his lovely family can get home. Conner is just adorable and his parents are the nicest people, they are so wonderful and strong. Also if you could send a prayer in for baby Katie, she just had a heart transplant. She is so cute and so far is doing very well. I guess it wouldn’t hurt to put in a good word for me too! Thanks Guys Love You All BIG Sky

Lots of Time to Play

Today my mommy set up a play system for me, I love it. Its kinda funny you wouldnt think that ribbons would or could give you a work out, but hey Im hear to tell you they can and do!!! As you can all see Im doing great with my trach, its still a bit uncomfortable in the neck area, but Im still healing. In a few days I should have it changed and then maybe I can get out of the PICU and go down to the floor..... We will just have to wait and see my mommy says. Thank You everyone for all your thoughts and prayers I know Im getting better and I think your kind wishes and love are helping me get there! Love You All Sky

Busy Day

Skylar had a wonderful day he got to meet photographer Lynette Johnson. She took so many photos of Skylar and the rest of us. We can hardly wait to get them back. She is also going to be posting information about Skylar and his SMA. So we think that is wonderful. She was a delightful person who is doing so much for sick children! Skylar also had a great time playing with his daddy today; he was very interested in dads badge and playing with his dads shave!

Alls Cool In The PICU

This morning Skylar was taken into the surgery room for his trach. He went in at 10:30 and was back in his room by 11:30. He did GREAT!!!!!! Skylar spent alot of the day sleeping, but he was up for a good part of it. While we were up we enjoyed kissing each other, tickeling, and lots of good smiles. We have about 7 days and we will get to go down to the floor. After that Skylar will have to do a swallow test, and Im sure there will be more test then that. But right now thats the only one I know of. Keith and I have to take alot of classes on taking care of the trach and we have to set up home nursing. Im not to hot about the home nursing, but we have to play by the rules (for now). So all in all it was a very good day and night for Sky. Thanks for all the thoughts, wishes and prayers! Hopefully we will be home the first week of June. So please keep all the love coming, and keep all the prayers up for Skylar and his family. Thanks Mom

My New Trach

Here I am just 2 hours after surgery, and ya know what its already made my stats better. My mommy says its nice to see a lower heart rate. I feel pretty good and I dont seem to mind my trach. All I know is its going to be good to get out of here so I can go home and start working on getting stronger. My mommy says if I can re-build my resp muscels to where they were before I got sick the trach will go away. But she and daddy also say, no mater what Im still there little Sky! Thanks for believing in me guys!!! I Love You So Much Oh yeah and I also had an angel with me, our friend Lori said his name was Willie. Her son Conner has an angel too, Hermen. They just keep us safe here, they watch over us while my mommy and daddy cant. So I was very happy to hear Willie was there with me while in surgery. Also Lori, I Love My Bug Toy Thank You Skylar Hug that Conner for me and tell him I cant wait to play!!!!

My Momma says...

After I got my new Trach I was very sleepy. I peeked a few times to see my momma right here by my side. She is the best mommy in the whole world, and thats a big place! (to me anyhow)
After a few hours of sleepy dreams I woke up and momma and I played for abit. She was so happy that I didn't have that icky tube in my mouth, (and so was I) she gave me big kisses.I gave a few smiles and said "momma" I can't hear my words and my throat is a little sore but she says, "that's OK bug, I Love you big". She told me that my sister Monica and my brother Chandler were coming to see me after school. I like that part of the day cause my Daddy always brings them to see me.
I like it when daddy is here cause he always lets me play with his shave. His whiskers tickle me and make me feel safe and happy. My momma says that my new trach will help me feel better.
Then when I am better I get to go to my house in Stanwood! I can't wait to see all of my toys! I sure hope that daddy is feeding elmo, cause when I get home he gonna do lots of singing for me!
Would you like to see my house? I am so happy there. I will have my momma and daddy show you some pictures. Well here comes the nurses, guess I better fake sleep so they will leave me alone. Yeah, I got this place figured out, you kinda have to when you been here as long as I have. Thank You for all your prayers for me! Keep them coming, I gotta get outa here!
Night Night... Sky

Well Sky held his own and who knows maybe if not for today’s events, maybe he still would be. Its just something we will never know. This morning while Skylar was having his CPT (chest physical therapy) the RT placed the suction cath to far down his throat, not once but twice. This triggered the vagel response. Skylars heart rate dropped very low a long with his blood oxygen saturation and breathing rate. So unfortunalty he had to go back on the vent this morning. Which means he will have to have a trach. Keith and I will be meeting with the doctors in the next few days to ask questions and start to get trained for home care. The good thing about all this is Skylar will get to come home and finish healing. And that in its self is great. But the trash has to stay for 9 months to a year, even if he doesn’t need it any more. Right now he is doing great, he is relaxed and comfortable. So please keep thinking of us and keep those prayers coming! Thanks Mom

Look at me guys I’m feeling much better! Today my mommy sat me up in my boppy billow and let me go at it with my baby barbell. I’m getting so big here!!! I’ve been lying down for so long my mommy thought it would be good for me to start working out!!! Thanks for all the prays, thoughts and love guys. Keep em coming, because as you can see there working!!!! Love Sky

Skylar has had a few good days now. His lungs look great and his secretions have gone down to an all time low. They are busy lowering the settings on his vent, to get him ready to get off the vent sometime early next week. The next three days will be full of exercises. They lower the vent settings and let Skylar take over his own breathing for an hour at a time. After his hour they put the vent settings back for an hour and then off for an hour. They do this one hour on one hour off to help him build up endurance; they are called pressure support sprints. Last time he did these sprints he did really well, and Im sure he will do well again. So guys its time to pray: Skylar needs to come off this vent! So please continual to pray for lung strength, no secretions, and all over physical and mental strength! Thanks Mom

Please people be careful with me, treat me right. Keep me comfortable. And PLEASE dont let my sadation ware off, its hard on a little guy like me to come out it and have a tube in my throat and hoses in my nose. I just want to be happy and heal..... Thats all I just want to get better and go home.