Life?.

Well it rushes by.....sometimes it is great and other times it down right sucks.

I have not been good about updating this blog...and I am rather doubtful that anyone reads it anymore but felt the need to do a little journaling so here I am.

I am sitting  in room RC.6.906, at Seattle children's, with Mr. Joshua. I am pretty sure it used to be room 4006 which is all too familiar looking onto what is now the old and unused helipad. We came here for a little dental procedure and ended up being admitted prior to the surgery. Joshua is running a little fever and as we all know he just gets crummy....and hospital staff around here see him and panic. I couldn't be happier that Dr Kemna is on service and is all too familiar with Joshua's little shenanigans. She could also find the humor in the fact that I  was able to convince an ICU fellow that he did not need to make room in the ICU for us! A viral pcr is on the agenda and we shall see what happens from there.  Right now he is perfect and resting.

I must mention that this November is not much different than any other.  Joshua was life - flighted Thanksgiving eve last year and here we sit again among all the fall cooties.  Yuck! Seems to be annual tradition. This year I am grateful for the company of my mom but my heart aches and longs for the presence of my dad.

I have so much to fill in and I hope to be better about documenting and sharing the life of this amazing little man.....

Blessings,
Leah

Spring 2011 Pictures

Joshua is an AMAZING boy!! He is growing up so fast and I would be lying if I didn't say that I would like it to slow down some. I just want to cherish every moment with this little miracle but it is hard when time is zipping by so quickly. I know that it has been way too long since I last posted and I hope that he has not become 'forgotten' from some of his long distance prayer warriors.

We recently went to Seattle for his annual cath but he ended up getting sick that morning so we had to cancel. We will be heading out to Seattle on July 29th to get it done. I am feeling pretty blessed that our heart friends from Alaska will be there at the same time. Natalie will also be getting her cath that day in preparation for her Fontan Surgery. She holds a special place in my heart as does her mommy. I found much strength from them on my first trips to Seattle. They are an amazing family with an amazing love for our Heavenly Father! I can't wait to see them again. Angie and Natalie also blessed us by coming to spend some time with me when Joshua was in the hospital not long after his transplant. I am SO excited to reconnect. I don't yet have the travel details together but an working on some sort of plan. Trevor races that day so James will stay in town with him. My mom has to work and my dad needs to be there for Trevor's race also. I have no doubt that the Lord will provide a traveling partner.
Joshua has really come a long way in the last year or so. He has now started to eat a little on his own. Most fluids still come in the form of Monogen thru his G-tube. He has started to drink more water.....hopefully he will continue to take off on that. He has been puking alot this last week since he has been sick. I can tell he has lost some weight and his intake has been less than desirable. I have started putting him back on the feeding pump at night. We have been bolus feeding for almost a year so I am not really enjoying this again but I think it may help. He is just too busy to deal with being pumped full of fluids during the day. He also eats much less when we are filling his belly every 2 hours during his awake time!

He still continues to be on a boat load of meds. We have hopefully found a good balance that will keep any rejection at bay but allow him some immunity. He was on chemo drug for over a year because of rejection and effusion issues but we just stopped that about a month ago. He remains on Cellcept, Rapamune and Tacrolimus as his main lines of defense. Joshua also receives the following medications; Duirel, Sprironolactone, Bumex, Levothyroxine, Dapsone, Losartan, Sildenafil and 1/2 baby aspirin. He get them at morning and at night. I am very thankful for this very reason that he still has his G-tube. I could not imagine trying to get him to take these orally each day!

Joshua is now walking....and running....and climbing! He is getting more verbal each day. He still loves to sing the 'itsy bitsy spider', although now it sometimes is done in a gruff voice and includes stomping the spider into the ground. Happy Birthday is also a fave. He used words that we didn't even realize he knew and surprised me today by counting all the way to 5 by himself. He knows many animals (thanks to Barney) and is learning many other things along the way. Some good....some, well, probably not so much. He is certainly all boy.

Our family has gone through many changes this last year. Joshua was up and down health wise. Trevor was busy as usual. He plays fall and spring soccer, is a Cub Scout and races Outlaw Karts. Trevor has earned 2 first place trophies so far this year! He gets AWESOME grades and has good friends. He is really a kid to be proud of!
Shyla had a little red headed boy of her own in March of 2010, little Izak James. (I can hardly believe that I am a nana X2 now!) I was blessed to be there at witness his first breath as I was with Trin. (I even got to cut his umbilical chord! ) We were shocked to find out that he also had some heart issues of his own. Not nearly as serious as Joshua but no less scary for sure. He required open heart surgery this year. I am happy to report that he is doing super well! He is no longer on any meds and has healed well.
Shyla and her kiddos also moved to Washington in September. It was quite an adjustment and not one that I was really thrilled about. I miss them dearly. Kids can really be a pain but it is heart breaking not having them close. She did make a good choice to go back to school also. She is currently enrolled in her last semester for her assiciates degree in Medical Billing and Coding. She took a CNA course last month and is currently working in Home Health! We are very proud of her. She has been dating a boy for about a year and they are planning on getting married next year.

Trinity is growing so so fast. She was just in Missoula and we got to spend a couple days with her. I miss the close bond that we once had. Time and miles can do that. We didn't get nearly enough time together. Joshua was THRILLED to have her here even when she was dragging him around the house like a rag doll. Trevor sees her much like a sibling. He misses her to tears when she is gone but it takes all of.....well about 2 hours before they are at each other throats! AAhhhh, the love!

James has been doing very well. He is currently looking for work. (If you wanted to say a special prayer for him that would be cool and much appreciated!) He has been pretty depressed for a stint. It has been nice having him home with Joshua but he needs to be working for his sanity. I don't know that Joshua would necessarily agree. He has become VERY attached to his daddy this year.
As for me, I was on unemployment for a long time after being laid off before I came home with Joshua. I didn't realize how much I loved my job at APS. I LOVED being at home with the kids but that doesn't pay the bills. I went back to work in November at DirecTv. I am happy to report that only lasted about 5 months. I have never been so miserable in a job EVER! I was blessed to get a job in a mental health office for children and families. I have spent my career in mental health and this is a great fit! The people that I work with are wonderful and I can't wait to get up to my full potential with this company. I also decided that it was time to go back to school. I am asking myself why exactly on nights when I have to stay up so late studying! I don't know what I want to be when I grow up. I am working towards my Bachelors in Management Information Systems so I have a degree to back up my brains. :) But I am thinking of a double major in Psychology. That is where my passion lies. We will see where that takes me. I am happy to report, that as of now, I have a 4.0!! I have an accounting midterm on my plate for tomorrow (that I really should be studying for) so that can change. Wish me luck!

I promise to update more regularly and include more pictures of our Joshua and the rest of the kiddos. They change ever so quickly. I want to apologize to you that were following his story closely that I did not keep up his blog. I was struggling with a lot of things and being on the computer was not a priority. I went through a spell where I felt I needed to censor what I was saying and I didn't feel comfortable doing so. As you have probably noticed I kinda just like to put things out there!

Thank you again for checking in on Joshua and our family and for your continued prayers. We hope that you are all having a very blessed start to summer and that you and your families are safe and healthy!

Pictures

I got tired of reformatting the text in the other post so I am posting some more pics separately!

CHEESE!! (And yes, he is inside a box. His sister felt he needed to be put in there.)

Stop mom, your gonna make me sad. I don't want to stop throwing all my clothes and shoes on the floor.

Now you did it mom, see I am sad...... (Such a faker faker belly acher!!)Ok I forgive you snuggle.

Mom and Joshua visiting James the day after Christmas.

HAPPY SECOND BIRTHDAY MR JOSHUA JAMES!!

WOW.....WOW....WOW!!!

I just can't believe that my little baby is TWO years old!

I can't believe that it has been two years since James and I were given the devastating news that there was something wrong with our little peanut.

I can't believe that after all he has been through that he is thriving and developing so quickly.

I can't believe that I actually survived the last couple years with nothing more than a few grey hairs!

Today I will wish my little Joshua James a VERY Happy Second Birthday!! Then I will get down on my knees and thank the Lord for allowing me to be his mother for two VERY wonderful years! I feel very humbled to be chosen for such a duty. My selfish human nature will also ask that I can have him for many more here with me on Earth.

Joshua is doing well. He continues to struggle with the chest effusions. We spent pretty much all of November in the hospital but we spent all of December at home! He is progressively getting worse so I imagine that we will have to trek out to Seattle this month for a little inpatient tune up. Hopefully it can wait until the end of the month. His last check up in Seattle was the 29th of December. Dr Law said his liver is still large and his lung exam is still not good but other than that he is doing "perfectly beautiful"! I don't know how long it will take before he has to get another drain placed. He is satting in the mid to low 90's. I have had him tethered to the oxygen for good measure. His awake heart rate has been in the low 120's and his resting heart rate is right around 110 each night. Pretty swell numbers for him.

I wish that you could all see how fun Joshua has been lately. He is on the move now! He can crawl pretty well to get to where he wants to go. He crawled across the living room to give Grandpa "knucks". He will also crawl across the living room to play with Trinity's kitchen. He loves to open up the doors and take things out and put them in. It is so nice to see him doing what I would perceive as a "two year old" thing. He is very interested in the older kids. He likes to copy what they do and say. Pretty funny stuff. He also has a knack for scooting backwards on his bum. This usually always ends up with hollers of frustration from under the living room table.

December also brought us a wonderful delivery! James is now in Missoula and we have been able to spend time with him each weekend. It has been so nice to see him and be near him. We spend the time playing games with the kids and just enjoying having our family together. The other bonus is that we can now call him when we need a daddy fix. Joshua gets very excited to talk to him on the phone. He has his own ring and Joshua knows when that ring comes on that his daddy is on the phone. I am glad that they have a tight bond even though the two of them have spent so much of Joshua's life apart. However, I am happy to have a mommy's boy!! :)

He is adding more and more words to his vocabulary. Here are some that I can think of that he uses a lot....

mommy

da-ee (daddy)

sssiiisssee (for sissy~and ALWAYS said in a LIGHT whisper)

per (for Whopper, our dog)

grandpa

knucks

gen (again)

heyyooo (Hello)

bye

up

cheese (when he sees a camera)

bob bob (Spongebob)

Pat (Patrick)

Boo (for Boots on Dora)

ye -yow (Yellow)

geen (Green)

bu (blue)

what?

WOW

wash (Hand sanitizer)

hoooray

dance

I love ya (With hand motions. ya is like a double fisted shooter pointing at you)
light

If he wants something he will extend his arms towards it and grunt and shove his arms towards it again. I will be happy when he can tell me what he wants. :) I am sure that we will both be happier as I don't understand 'Joshua lingo' as well as I should.

Things he copied....

*Trevor got hit in the eye with something and was fitting out. Sissy told him you are fine, how many fingers am I holding up? Trevor's response...."Duh, three" We all broke out in laughter when Joshua shouted out..."Duh, three"! Trevor forgot that his eye hurt in the midst of the laughter. And I must also add, no matter what happens to Trevor if he gets hurt and cries....Joshua will cry louder, harder and more dramatically. He always steals brothers thunder!

*And I have to thank sissy for this one too. She was playing with Joshua and was irritating him. She asked him...."Am I pissing you off?" His response..... "Pissing off" UGH. Shyla slapped her hand to her mouth and so did he! It was comical and after that she used the term....making him mad! Gotta love teenagers.

*He likes to cough when anyone else in the room does.

*Trevor has a wonderful talent of 'armpit farting'. (He is such a BOY) He was entertaining himself doing it one night and I looked over and there was Joshua with his arms crossed pumping them up and down. :) Silly boy.

This is more for me than anything. I would like to be able to remember what had been happening with him when I look back at this journey. :)

*This last month he has gotten all four of his molars. One of which prompted his first ever visit to the dentist. He had a nasty thing hanging from his gums. After an emergency dental fee I found out it was totally normal. The good news is that I was prepared for the fact when it happened 3 more times! He had a lot of gum bleeding but I now think the worst is over...for teething!

* We had a wonderful Christmas. He enjoyed the lights and of course the unwrapping of gifts. He had a guitar that he was super excited about when he opened it. He was grunting and shoving it to me to take out of the package. Sadly, it did not work and we had to wait to exchange it. It is a favorite now but was a real bummer to have to loose the initial excitement. Some other faves that are getting a lot of attention: Magna Doodle, Little People Farm, Keyboard, gloworm (that he cuddles and kisses like a little baby. He also puts it up to his shoulder and pats it's bottom), Singing Elmo with a microphone (He serenades us with the mic.)

*He is a master at the Itsy Bitsy Spider. He says 'Itsy Bitsy', wash, rain, and down. He knows all the right motions and will do them all in order even if you don't sing.

*Also a master at his very own version of Pat a cake. He says roll it, pat it, oven and Sunday!

*I am pretty convinced that he is going to be a lefty.

*Joshua likes to be involved in all that we are doing. He can flip over Memory cards, roll dice (two at a time) and color. He loves to play catch and throw things. His best game is 'Watch the adult pick up everything I throw on the floor.'

*We had a nice day with family for his birthday. Pretty low key. He liked to touch and taste his cake. I tricked him by asking him to kiss it goodbye! He loves to spend time all of his grandparents to it is always fun for him to be surrounded by them.

Thank you all for checking on our Joshua. I am going to sign off with a HUGE prayer request. I screwed up at the end of December and didn't pay Joshua's insurance premium. I CAN'T believe that I did this. I have had a lot on my mind and it totally just slipped out. I remembered on the morning of the first but of course they were closed so there was nothing that I could do. When I called today they said too much time had lapsed. UGH. I sent in a letter to appeal their decision to cancel Joshua's insurance. Please pray hard that they will reinstate his insurance. I have been a total wreck as I don't know how I will care for him with the cost of his medical care being WAY more money than I see come in. I know that it is all in God's hands and nothing is too big for him to handle.....but what happens when I was the one that screwed up? *sigh*

Here are some pictures! :) Blessings to ALL of you. I hope that you all had a wonderful Christmas and I hope that you are all blessed and filled with joy in 2010.

Love, Leah & Joshua (& of course the rest of the Garrison clan.)

The BEST part of going inpatient at the hospital.....FRIENDS!!

This was taken a day or two before we left the hospital in November. He was playing in his crib super early in the morning when I was still resting. I didn't know that the nurse had the pillows set up for him. All of a sudden he went quiet so I jumped up to check on him and this is how I found him. Guess he was ready for a recharge! (Notice the leg....always out the crib rails!Concentrating real hard! He was helping Trevor and I wrap sissy's gifts while she was out of the house. She had the 2 biggest boxes so it was quite a chore. Joshua was 'helping' us. As soon as we got the gifts wrapped and were feeling like we did an alright job considering the extra set of hands....we heard him ripping! He also helped open the gifts. Needless to say the packages went under the tree with lots of tape and mismatched paper. :)
What!?!?!?! I wasn't pulling the lights of the tree!!

A week ALREADY.....are you KIDDING!?!?!?!

I am sorry that a whole week has passed since I updated. It has been a nutty week for sure.
So a quick update.....
Joshua went to OR on Tuesday, then Wednesday and then on Friday. I am sure that he is getting tired of the anesthesia. The right chest tube clogged and they wanted to place a left one. There was no left fluid so they just placed a PICC line in his chest and changed out the right tube. Wednesday he went to the cath lab. I am THRILLED to report that there is NO REJECTION!!! WHOOO HOOOO!!! This cath will take the place of his annual one that should take place in January. Thursday night his PICC like clotted off so they decided that he had to go back under and replace the PICC line with another one and try for a left drain again. The left drain has put out 85 cc's and the estimate was 75 so we are good there. Last night, however, the freaking right drain CLOGGED!!! ARE YOU KIDDING ME?? So, he will go NPO again tonight at midnight in care we have to put him under again to replace the right drain. *SIGH*
On the plus side. He is PEEING amazingly well. There was a point this week where it had stopped again and they were running out of ideas. If he didn't start to pee they were going to move him to the ICU to administer a drug to lower his blood pressure in the hopes that it would stop the effusion and 'warm' his kidneys up. Thankfully, the night before this was to happen he responded to the diuretic and has been peeing again. His BUN is the lowest it has ever been at 38 and his creatinine went from 1.0 to 0.5. HOORAY.
Today he looks super. His oxygen is actually off for the first time in 3 weeks. He is breathing easy and peeing well. Maybe.....JUST MAYBE.....if he stays stable like this we can go home sooner rather than later. We just need to get his meds all straightened out. Please pray that they don't need to replace that tube. I would love to see it just come out so that he can get out of the crib and play! He has been stuck in his bed for nearly a week and it itching to move around.
I would also like to report that he has begun to be interested....really interested ... in EATING! WHOOO HOOOO. He has been eating applesauce and doing well with it. Maybe tomorrow I will try something else. It is so nice to see him want to try different things. Hopefully he will keep it up.
Tomorrow is the start of a new week and Dr Kemna will be on service. Joshua is always much nicer to her than Dr Law. :-) (I think he likes to challenge his great mind!) So maybe we will be on a homeward bound trail.
Blessings,
Leah and Joshua

Pee Pee Celebration!!

HE DID IT!!! After 4 long days our Joshua has finally peed! :)

And peed....and peed.....and peed. The good news is that he no longer looks all swollen like he could burst at any moment. The bad news is if he keeps peeing like he is now, he will dehydrate again. I tell you this kid has NO middle ground....it is all or nothing!

He has been very happy and playful all day long. We are trying to manage his electrolytes and med levels as best we can. He will go to the cath lab on Tuesday and if prayers are answered (mine anyways) we will be home for Thanksgiving....AS A FAMILY! (Well almost family, but I will happily take it.)

Thursday....not much good news today

Joshua had a really rough night. He was up every couple hours crying and struggling to breathe. This morning we came in at 950 cc's positive for the day. He hardly peed at all again yesterday. Today he is swollen and grumpy. IR came in and unplugged the clot from his drain and pulled out another 200 cc's of fluid from his chest cavity. We are now at 640 since the drain went in. We did another ultrasound today and determined that he will need a tube placed on his left side as well. Dr Law is also requesting that they place a PICC line in his neck because we need to monitor his labs closely and this will allow them to get blood without poking him and blowing out the one good access point that we have. Sounds like that we will not be going home soon. :-(
Please pray that Joshua's little body heals fast so he can continue to move around and be happy. Being tethered to the bed at two years of age is not making him too happy. Also, please pray for strength and comfort for my kiddo's at home who are really missing us.
Blessings,
Leah