Having Fun

Peek.........Peek.........Peek

Jake took a cat nap and Skys sure he is on his toys!!!! Move kitty!!!
Trach and Jake were napping until Sky realized they were there, Sky says its time to play guys get up!

Its been so great having my sissy home, she plays with me and she makes me smile, but tomorrow she is going back to her daddys house for two more weeks. Also this weekend daddy bought a newer truck, its pretty neat. We took a little trip in it yesterday to see Grandma Helen. I like the sunroof the most and oh yeah the air conditioning. My sister and brother went to the Stanwood fair with my daddy on Saturday. I think they had fun, everyone was pretty happy when they got home. My daddy won me a tiger, and they bought me my own puppet. Other then that we have been staying in, trying to get this cold to go away! Im doing good, its almost gone... I just need a few more days I think.

Pray For Connor Please

Our friend Connor (little bug) is back in the ICU. His daddy is on a mission flying in the war and his mommy is there with him. Please pray that the doctors give answers this time, pray that Randy, Connors daddy has a safe mission and that Lori, Connors mommy stays healthy and gets rest as she is expecting Connors little brother or sister. Put please pray for strength for Connor, pray that the Lord gives him gentle nurses and doctors. And please pray he gets well and goes home soon! Thank You Skylar and Family

Getting Over My First Summer Cold

It has been a crazy week, Ive had the sniffles and a little cough this week. Im starting to feel better now. Man did I have my mama busy! There is Lots of suctioning when you have a cold, but she managed through it pretty good. So did I, because Im feeling better. My brother Chandler let me play with one of his puppets today, its a tiger. And I love it, it made me smile and laugh!!! Thanks Chan!!! Monica is still at her dads, I miss her LOTS!!!! Mommy has a coffee cup with her picture on it and that makes me smile! She comes home this weekend and I can not wait!!! Ill be all better and ready to PLAY! I heard that my bug buddy Connor is going to be a BIG brother, way to go Connor. Your going to be a great big brother!!!!

Back From Clinic

Well what a day, did you know it takes almost 2 hours to get this kid-o ready to go somewhere. I was a busy bee this morning. Skylar had his first pulmonary check up this afternoon, and he is doing great! We dont have to take him back until the end of September. They will be lowering his setting in preparation to getting him ready to have time off of his V-Pap! Yes were going to be getting small breaks, 15 mins to start and we will go up from there. The short term goal is to have him off the V-Pap during the day and on at night. That would be great!!!! Time off will give me better time with building his neck muscles.He lost a little weight, but Im not worried about it. He weighs 23.9 lbs and he is only 15 months old. He has a very good apatite; he averages 40 ozs a day. They tested his end titles and they were 34. Thats the carbon level, and its very good!!!So it was all good news today. We planned on visiting our little friend Connor and his mom today, but they got to go home last night... So it was good not visit today, because they wernt there. We do look forward to seeing all of them sometime soon! Good friends are hard to find.Sorry no pictures this time. Ill post pic in a few days!

Special Prayer Needed

Everyone who reads this blog please say a Prayer for our friend Connor. Or as we call him little bug! We meet baby Connor during our stay at Childrens. I just spoke with his mom and they are back in the ICU. I cant give details, but I can say he is in need of prayers right now. So please, pray for our dear friend Connor, pray for healing. Thank You and God Bless

Staying Cool!!!

It is HOT!!!! And Im hooked up to heated air 24 hours a day, so that makes it even hotter. But Thank God for my mama and daddy they know a few tricks. My daddy got me this gel filled dew rag that you let soak in cold water for 30 mins and it stays cold for days. And my mommy puts small blankets in the freezer for a few mins and places them under me. Man does that feel good!!!! And then there is the most important swimming pool. Yep I have a pool. My mommy and big sister Monica set it up for me in the middle of our living room. Sounds kinda crazy, but it worked! I had a blast playing in the water, kicking my legs and splashing my hands. It’s hard trying to catch the toys that are a float though. Monica and I had lots of fun. She is such a cool big sister, she loves me lots!!!! Im kind of sad today though, today she has to go to her dads for his part of the summer. She wont be home until the first weekend in August, and thats only for 2 days. My mommy says it will go fast, maybe for her, but I know Im going to miss her lots!!!!! If you read this sissy I Love You VERY much, you make me happy and you make me laugh!!!

New Photos From Home

Gaining more and more strength each and every day!!!!

I love playing with these two toys they spin and move, I dont even realize Im working out using my upper arm strengths.

AHH.... That smile says it all Happy and very content!!!

Skylar is doing very well, he is going in for his pulmonary apt next Friday, from what I understand we will be meeting with a diet ion, his pulmonary doctor, and someone from the trach team. We have been working with Skylars exercise ball, so far so good! He does really great for about 10 mins. So our goal is to increase his time on the ball a little more each day.

Happy Happy 13th

Today is a great day, it is my mommy and daddys wedding anniversary. So Happy Anniversary I Love You guys!!!! I also found out today that I can get rid of all my meds but the vitamins (YEAH), I have to do a fallow up with cardio at the end of August. So no more nasty meds!!! In the past week I have pushed through my 1 year molars, I was a little cranky, but not to bad. My mommy has been working with me religiously, and I have gained strength in my upper body. This weekend she is getting out my green exercise ball. I cant wait, I use to love to play on that ball. In all Im doing very very good, my stats havent changed, Im still keeping my oxygen level at 98 to 100%. My mommy is even giving me breaks off of the probe, I guess she just needed a bit of time to really see how I was going to do at home, so now she has her base line, and now I have one less wire in my way during the day. I still wear it when Im sleeping, thats an order so Im sure that wont be changing anytime soon. Other then that Ive been playing and eating, and playing some more. I truly love being home with my family!!! They are the greatest!!! I Love You ALL so much!!!!!!!



Happiness is being around the ones you love!!!!

Oh yeah I forgot to tell you mommy is working with me on using sippy cups. I dont have it down yet, but Im sure Ill get it!!!

This is part of my PT, my mommy puts the toys on the glass and sets me down. I have to find them and play! Its quite fun and Im doing really good with it.

Nap time. Nothing more precious then a sleeping child!!!

Hanging out with Snoop!

Tired baby boy!!!! Again there is nothing more beautiful!!!!

4th of July Celebration

The manly way to light your fireworks, no punks required!






Our day started out normal, kids playing games, dog lying on the floor, Sky playing with toys. The fun began with a balloon toss with Monica and myself in the yard. I think I won, because I didnt get wet. Then it was a yummy feast, BBQ chicken, burgers, mac salad and ice cream treats. The kids were all buzzing as it started to get dark, so out we went. I learned fast that the new sparklers are not so great! I helped Sky hold his first sparkler tonight when I noticed these babys really give off a spark. Well it came down to a little hole in the pooh blanket. So no more of that, Skylar was good just watching and so was I. Everyone seemed to have fun. It took our little bug a total of 2 mins to fall asleep after the nights events, he loved the colors and the sparks. It was a GREAT day!

Summer Fun

And I just had a bath, well it looks like I might be needing another one!


YUMMY Summer time treat, Chocolate!!! Oh man was this good!!!!!


Nap time, Shhhh


A little bit of sunggle time with my daddy, oh man I Love this guy!!!!

Big Big Smile! I was on the move thats why Im a little out of focus!



Sitting in my daddys chair!
Yes Im one of those moms who is always taking pictures! But every moment is awesome and I have to share our happy bug with all of you!!!!

Love Being Home

This week we had a journey to Children’s for Skylars 3rd echo. The last 2 were normal and so was this one. Now we are just waiting for his doctor to call and let us know when he can stop taking the heart medication. I did some research on this heart med, and let me tell you its some nasty stuff! It can cause low iron, acid reflux and a bunch more. So once that goes away we should be able to lose the antacid and extra iron.Other then that Skylar is doing very well at home; he is making lots of sounds and forming words. This morning I woke up to him saying mama from his crib! What an awesome way to wake up!!! We still have the nurses, but its pretty low key. I guess they want to see if I burn out or not taking care of Sky. Little do they know me, this isn’t a hard job it’s normal to care for your child. So ill humor them for a few more weeks.Skylar doesn’t have to go back for another check up until the 28th of July, so that will give me some time to work on his muscle tone. I hope to have him doing pretty good at our next appointment!

Playing With My Way Past Due Birthday Gift

I Love this toy it sings songs, it speaks five different languages. It moves and flashes. Its pretty cool! Thanks Mom and Dad I Love it!!!!!!

More Pictures From Home!

This has been a very good week! Skylar is doing very well. He pulled his NG on Wednesday, but we chose to leave it out due to he is eating what he needs by mouth and we havent had to use the NG any way. His stats have been great, his blood oxygen has been 98 to 100%, we cant ask for much better then that. Today we all went for a walk to see Skylars pediatrician, it was a 5 min walk and a 20 min appointment. All looks and sounds good. It was great to get out of the house and enjoy some sunshine!



Im a HAPPY bug! Look at ALL those teeth!!!!


I Love hanging out with my sissy!

HAPPY Baby

Lori, Randy and little bug Connor. We love this little bug, he is watching over the fish! Take care hope to talk soon!

Staying cool! And loven each and every second of it!



Playing with my toys! I am so HAPPY to be home!!!!

Pictures From Home!!!!

Playing in my bed!!!!


PLAY TIME!!!!!!

Great To Be Home!!!

The ride home went awesome, Skylar did very well. He even fell asleep for about half the ride. It wasnt a big ordeal getting him set up at home, we were very ready. I think it took us all about 15 mins to have him settled. And let me tell you this little guy is VERY HAPPY to be home!!!! So is mom and everyone else. Skylar had a GREAT night and a wonderful day so far. We had a nurse for 2 hours yesterday and a nurse for 3 hours today. They didnt do much but write in there log books. I tried telling them last week that Skylars care wasnt anything we couldnt do. And Im proving myself right. I dont think we will have any nurses past 2 weeks. And thats because I signed a contract and they have to have 2 weeks notice. Sounds far to me! Other then that it is so wonderful to be home, I can not describe the feeling, other then simply amazing!!!!

BIG NEWS

We are going home Saturday at 11:00am, not Monday! Such wonderful news, we will be home in time for fathers day! Im feeling pretty special right now, because they do not discharge on the weekends. Thank God were coming home, and we will be there in less then 24 hours!!!! Thank You to everyone for your support during this hard time, Thank You for your Prayers, and thoughts. SheilaE

Busy Busy Busy

Busy Busy Busy
The past few days have been crazy! My mommy and daddy changed my trach on Monday. That went very well, daddy took the old one out and my mommy placed the new one in.I also got to go portable. That was allot of fun, my mommy and daddy took me around the hospital, I got to see elephants, zebras and I got to go out side. We also went and visited our friends Lori and Connor. Connor is going home the same day as I am the 19th!!! Thank God, we kidos need to get out of here, so we can start being normal bugs again! On Tuesday I met three out of four of my nurses. We are going to have to wait and see about that one. One of them has allot of allergies, and the other two have hip and leg problems.Wednesday I had my last X-ray of my lungs, they look great!!! But that X-ray also showed that sometime in the past 2 to 3 weeks someone broke my left arm. Yep they broke it! Can you believe that....? My mommy and daddy are more then a little upset. But the good thing is it is healing very well and it will not require rebraking or casting.Thursday, today my mommy had to leave me here alone for about 7 hours, I wasnt very happy about that! She had to go home and have the equipment set up for my care at home. But at least she got to pick Monica and Chandler up from there last day of school! Friday I have to do a car seat trial. I did one on Monday but no one was keeping an eye on my stats, so I have to do another one tomorrow. Also I have been taking about 85 to 90% of my food by mouth, I dont think this feeding tube will be coming home with me! (YEAH)Other then that the next few days are packing and waiting to go. I cant wait to be home, its going to be incredible!!!!Thank You everyone for all your thoughts, prayers, love and wishes, they mean so much! God Bless Love Sky

One More Week

One more week!!!! Skylar and I are getting so excited, we will be home soon! Thank God!!!! This has been a very long stay and we miss our family and home so much… Skylar is doing awesome! He has started to make noises around his new trach today, no words that can be heard just noises. He is such a strong little guy; I am amazed by him more and more every day! I know that it’s just going to be a mater of time before he is where he was before getting the flu. He has such an amazing personality, that it is reassuring as to what he can do and over come.

This week is going to be a busy one, Keith and I have to finish up our last class Monday morning, we have to change Sky’s trach. I was a little freaked out about it, but I know it will be fine, and we will handle it well. Tuesday we get to meet all the nurses that will be coming to our home to help care for Skylar, that sounds like it is an all day event. I’m still not sure about all the nurses, but I have learned that how much care we get is up to us once we are home. So I’m sure there will be changes made. Thursday we have to be at the house for all of Skylar’s equipment to get there, we have to put them where they need to be, check them all and learn how to run a few. Wednesday and Friday are fun days, Keith and I get to load Skylar up in a buggy and take him around outside and the hospital. And the big day Monday the 19th, load the car and run as fast as we can!!!!

Getting Ready To Go Home!!!!

The past few days have been great, I am doing excellent and so are my mommy and daddy. They only have one more class on Monday and we are all done, and my mommy tells me that we don’t have to have 24 hour nursing, YEAH!!!!! They are starting us out on 12 hours a day... I’m sure that will dwindle down pretty fast, before I know it will just be me and my family again!!!!! This week the ENT doctor took out my 3.5 trach and replaced it with a 4.0 trach with out a cuff. That means Ill be able to move air over my trach and make noises and eventually talk. Also this week I had a little camera placed down my trach, they wanted to see if I had a floppy airway. No floppy hear, it looked as normal as normal gets. That basically means I don’t need all this support from my V-Pap. So Monday after my mommy and daddy change my trach tube they are going to lower my settings. And I almost forgot, they took my ND feed tube out and placed it in my tummy, so far so good. And I have been eating food by mouth, so far I am up to 3 to 4 ounces a day, I know it doesn’t sound like much, but everyone keeps telling its great! So hopefully in no time Ill be eating all of my foods on my own. Other then that I get to go home for sure on the 19th, I can not wait!!!!! Thank You so much everyone for all your wonderful thoughts, wishes and prayers Love Skylar

Cuddle Time

Skylar is doing very well out of the PICU. He is gaining strength and enjoying each and every day. The count down has begun and we know home is right around the corner. While we have been here Skylar has pushed out 3 teeth and he is working on two more. Its crazy we got here and he had one tooth and now Im telling you about teeth... They change and grow daily, its amazing! Also while we have been here Skylar has managed to grow out of his infant car seat, we had to up grade to a big boy seat, I showed him his new seat and he was very pleased (I got lots of smiles that day). He knows that means we are going to go bye-bye soon. Today we are looking forward to a visit from Daddy!!!! Skylar loves when Daddy comes to see him, and I know when we get home he is going to be a Daddys boy! So mostly today we are hanging out and visiting, playing and reading books, and of course having lots of cuddle time!!!!

Special Poem

This poem was given to me by Skylars Grandma Helen. I wanted to share it with you all!

HEAVENS VERY SPECIAL CHILD By Edna Massimilla

A meeting was held quite far from earth
It was time again for another birth.
Said the Angels to the Lord above, "This special child will need much love.
His progress may be very slow. Accomplishment he may not show.
And he will require extra care, from the folks he meets down there.
He may not run or laugh or play,
His thoughts may seem quite far away.
So many times he will be labeled,
Different, helpless and disabled.
So lets be careful where he is sent.
We want his life to be content.
Please Lord find parents who will do a special job for you.
They will not realize right away,
the leading role they are asked to play.
But with this child sent from above,
comes stronger faith, and richer love.
And soon they will know the privilege given,
in caring for their gift from heaven.
Their precious charge, so meek and mild.
Is heavens very special child.


I Love this poem so much, it made me cry, sad and happy tears!
But mostly it made me think of my Sky, and I wouldnt change him for all the
money in the world, there is no other richness needed. I have my precious boy.
And I love him so very much!

Got My Go Home date!!!!!

Today has been an excellent day I got back from my swallow test and I was told that nursing would be all set up and equipment set up at home by the 19th, so that means my mommy and I get to go home the 19th. I cant wait!!!!! Also in this picture is another one of my very best nurse, Nurse Melanie. She was also very very nice to me and gentle. She always made me smile!!!!

Swallow Test Passed With Flying Colors!!!!!

This afternoon I took my swallow test and I swallowed everything they gave me, even the liquids. They say liquids are the hardest, but I did it!!!! Now I get to have 1oz of food or liquid a few times a day, and as I tolerate that I can have more. The more I eat the less I have fed to me through my NG tube!!!! My mommy and daddy were so HAPPY! And so am I!