Friday, June 26, 2009

Friday June 26th

Thirteen months ago we brought Joshua over for a pre-glenn cath. I were expecting to stay 2 weeks, 4 at the most. I had no idea the path that our lives were going to go when we made that trip.
This last year has really been something else! I have developed relationships and made friends that I hope last the rest of our lives. I have been shaped as a person by the people that have touched my life this last year. I don't know how to thank all of the people that reached out to me and our family and supported us through the trials that we endured. I don't know how to thank the doctors, nurses and staff that took care of Joshua and even more importantly truly cared for him. I don't know how to thank all of you that follow Joshua and our family and offer your prayers and support. I feel completely blessed! Please know that I THANK YOU from the bottom of my heart and pray that you lives will be enriched like you have enriched ours.
This year has also brought immense heartache. I have shed more tears than a person should in a life time. I have never been so scared that I would have to say goodbye to one of my children before I even really knew them. I have seen more parents and families leave the hospital with empty arms and broken hearts than I can even fathom.
I felt completely and totally blessed when Joshua was discharged and got to leave the hospital with my baby. There were days that I didn't think that would become a reality. Today I feel overwhelmed with joy as I get to tell you all that not only did I get to take my child and leave the hospital, I get to take my child and leave Seattle! Yes friends, we get to go HOME! HOME TO MONTANA! I am so excited to take him to the home that I know he doesn't remember but the place that he has always belonged, share him with family and dear friends who have met him but a time or two and introduce my miracle baby to the ones that he has never met. I am so grateful that this has become a reality! But I also admit that this is bittersweet. By going home I am leaving behind people that really mean a lot to me. I hope that we can continue to be friends even though there is distance between us. My hope is that Joshua will grow up and know that he had 2 families that loved him. The one that he was born into and the one that embraced him with open arms and showed him love when the other family had to be so far away.

We will be taking off for Montana (HOME) this weekend. I want to say that I am sorry that we are ducking out without saying goodbye to those of you here in Seattle. Please do not take this personally. I really REALLY want to but Joshua has been sick and I don't want to be spreading bugs! We will be back for appointments on the 22nd of July. We will be coming to Seattle for a whole week and will make our 'goodbye' rounds then.

I will continue to update the blog with Joshua's progress and the craziness that is our life!
Blessing and love to each of you!

Tuesday, June 23, 2009

Over due update

Well the verdict is in. (Or better yet was in late last week.)
Joshua had Rhinovirus (common cold) and para influenza 3. He has really perked up and was released from the hospital late Sunday night. I tell was SO hard to not see him for a whole week! It was shear misery. I am very happy to have both my little guys right here with me. :)
The first night Joshua was home he was up about every 1/2 hour throwing up or crying. It was really rough considering that Trevor spoiled me all week and let me sleep in until early afternoon. It was pretty nice, but now I owe him. ;-)
Last night was much better. He slept pretty well and only hurled a couple times. I didn't have to change the bedding repeatedly like I did the night prior.
We laid pretty low yesterday and today we took advantage of the sunshine and went to Matthew's beach. I can't tell you how much I love being just a couple minutes away from the lake! The weather was mild and breezy but Trevor took a dip his jeans. Joshua fell asleep as soon as he hit the beach blanket. Next time we will be more prepared; swim suit, TOWEL, beach toys and toys for Joshua. And an anchor for the umbrella may not be a bad idea. The first gust of wind picked up the darn thing (which is really big) and blew it right into a group of day camp kids. UGH. I spent the rest of the time holding it down.
Here a couple of pictures to document our day.
Thanks for checking in on us!
Here is Joshua immediately after hitting the blanket.

Trevor enjoying a dip in Lake Washington. (The kids in yellow shirts would be the victims of the 'umbrella incident'. There were about 25 of them all gathered in a 'huddle' when the umbrella attacked them. YIKES!
Because we were so prepared (NOT), Joshua decided to play with Trevor's french fry box. There happened to be a couple left in the box and one fell out and landed across his upper lip, like a mustache! I was trying to get a picture of it before it fell.
This was the result! He does NOT and I repeat DOES NOT like to be laughed at. Not even at, he just doesn't like you to laugh. The result is this face, HUGE crocodile tears and WAILING! Then you have to laugh at him which makes everything even more dramatic. It is so funny. As cute (in a sick little way) as this is....I hope he gets over it. We are a family that enjoys laughter. If he doesn't want to be the target of this laughter he needs to stop this action! He has been doing this for quite a while now. There was even a night that we rented Mall Cop and he was in his crib. There was a funny part and when my mom and I started laughing Joshua turned on the water works. My reply was "dude, its a with it!"

Thursday, June 18, 2009

2 do I loose the time!

Well I guess a lot has happened in the last two weeks.
I will start backwards so that I can so this without missing too much. (I hope)
First....Joshua is back in the hospital. I had to admit him on Monday night. He threw up a lot on Monday morning and by after noon was running a fever of 38.5 (101.5). I called and Dr Law wanted him to come to the ER to be seen and admitted. He became pretty lethargic in the ER and hit 39.9 (103.8). He was pretty miserable. By the time he went to the room he was happy and back to normal. They took blood, urine, poop and snot and found nothing alarming. Nothing is really apparent as to what could be wrong. He did spike again to 39.3 this morning. He is in isolation.
On another note....Trevor is here with me. :) I have missed him so much. It is making this mommy thing pretty tricky because I can't have Trevor at the hospital so therefor I do not get to see Joshua. :( UGH.
Yesterday, Trevor and I did get to go on a Sailing Heritage Cruise in Lake Union. It was very nice. It was scheduled for Garrison Family of 3 but Joshua bailed on us!
Sunday, (when Joshua was still feeling good....REALLY GOOD) I called Dr Law and asked for permission to take him in public. Dr Law said YES and Joshua joined us in a public building for the first time in over a year. We went to the Seattle Aquarium. Trinity's dad, grandma and uncle came to Seattle to pick her up. I thought that it would be somewhere nice to go since the weather looked a little iffy. Joshua LOVED it! He was smiling the whole time. He did fall asleep very quickly after we left.
I had picked up the girls last week and they spent a week with me at the house. It was so nice. AND for ONE WHOLE WEEKEND I had ALL the kiddo's TOGETHER!!! WHOO HOOO
We had a real nice time.
I will update more on Joshua as I find out. We are waiting for enhanced nasal wash results to come back. We did an enhanced panel to see if we could find something.
Week in review....through pictures: (I will try and get an album put together because there were a lot of great pics)

He sported this smile A LOT during the outing to the Aquarium

Little Miss Jellyfish.....(although it reminds me more of an ovary!)

We didn't get one where all of us were looking at grandma or smiling!

My little captain got to steer the boat 3 times! He did a great job even with the distraction of the water planes coming and going.

Sunday, June 7, 2009

Laughter is the BEST medicine! :)

I posted a new Video at the bottom of the page.
** Be sure to pause the music before you start the video :)

Friday, June 5, 2009


It is so nice to have access to my own computer again. :) Here are some pics. I have some older ones I will try and post later. These are from the last couple days. He is getting so BIG!

Wednesday, June 3, 2009

Holy Smokes!

I am so sorry for keeping you all in the dark! It has been a long and busy couple weeks.
Let me bring you up to date with our little man. He is in the hospital right now but we are actually discharging in a few minutes. :) He was admitted on Friday with fluid issues and he actually required oxygen so they kept him. He was satting in the mid to high 80's. Kelly noticed he had Kool-aid lips right off.....I didn't see them. YIKES.
He had his cath on Monday and it went pretty well. They put a block in the SVC that is not connected to his heart. Hopefully that will help with some of the issues. We don't really know yet. They also took a biopsy and today I was informed me that there is ZERO cellular rejection! Of course, we still can't figure out exactly what is going on with Joshua's heart but we are looking into many things and praying for an answer. It has pretty much come down to watching and waiting for now.
My dear friend Darla was here with me for a few days. She just went home yesterday. It was so nice to have her here with me and get caught up. Of course Joshua ended up in the hospital the same day that I had to pick her up from the airport so needless to say it was an interesting time! We miss her already....and certainly wish that there were many less miles separating us!
My Aunt Dorothy also went home....a week ago today. It was great having her here and helping me out! I also took Trinity back to Shyla on the same day. It was a long tiring day. I did however really enjoy spending some time with our oldest kiddo who seems ever so far away. But I have to admit it seems really weird not having TD around! You would think that having a two year old around would be a pain but it was VERY GOOD for my soul! I miss her.
I am counting down the days until Trevor gets here! He gets out of school on the 11th and then he will come and stay with me until we get to go home. I can't believe that I missed his WHOLE first grade year....what a bummer!
And...the house....UGH. They decided not to cover any of the damage because they said it was negligence that my hot water heater leaked for a year. They OBVIOUSLY did not listen to a darn thing that I said. The hot water heater was NOT the initial problem! UGH. I guess I am glad that they came out because that stupid thing would be leaking still if they didn't. It was only leaking for a month.....I can say this with certainty because now my power bill is back down to $130 /mo vs the $320 that it was the month prior! Oh well.....
I am sorry for not updating sooner. I am now hooked back up and will be better...I PROMISE!!