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!