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

Tuesday (Change of plans)

In an effort to get us home sooner and because we feel we are loosing the diuretic battle, Joshua will go in for surgery today. He will go to IR (Interventional Radiology) and have a drain placed to get the fluid out of the area surrounding his lungs. He will go in about 2:30 pm and hopefully be out in about an hour or so. Please pray that all goes well and that the fluid is in place that they can safely tap into it and remove it. The hope is that we can remove the drain in a couple days and prepare to get home. I seem to be a little more antsy this time as Trevor's Birthday is Monday and I REALLY REALLY want to be there to celebrate with him this year. Of course, safety first, but if Joshua can safely go home then I will be THRILLED!

All in all Joshua is doing ok. He had increased work of breathing yesterday and required more oxygen overnight. He seems to be ok when he is up playing though.

Quick Update

Not too many changes today. They did another x-ray and it looks much better than yesterday even though I don't feel that he peed as much as he usually does. Strange. The viral FA came back negative so he is out of isolation! I hate that restriction. Dr Law is still leaning towards altitude as our problem. I think that could be why he is better when we get here but it still doesn't explain why he went from good to not good in one weekend. We have been home for the most part of 3 months without an issue. Still working on what it could be. He said next time this happens he is NOT having us drive 10 hours to come here to manage something that I can manage at home......hmmm....I think I said that before we came. :)
He continues to feel well. He would probably be better if he could get a decent nap in. Each time he falls asleep someone needs to come in and wake him up. GGGRRRRR. He keeps getting on his hands and knees in his crib today too. Family Life finally found us a floor mat so when he wakes up we can get down and play and practice this new position.
Sounds like we should be home by the weekend. It sounded sooner then I heard echo on Friday so I would assume that we should be getting ready to go. YIPPEE. I love to see everyone but I miss my kiddo's at home way more.

Shyla, Trevor and Trinity~ I love you as big as the sky and miss you.

Back Among Friends....

We are back at Seattle Children's. Joshua was admitted at 6 am this morning after a long drive in the car. Sunday he was satting around 88 and I put him on oxygen. I couldn't really pin-point any certain thing that was 'wrong' with him. I called Dr Law and we chatted about somethings that I could do and watch for. Monday moring he just wasn't looking good to me, so I called the pediatrician and took him right in. Dr Hardy and Dr Hall did their assessments and we looked at another echo and saw that the amount of fluid in his effusion had just about doubled from Friday to Monday. Dr Law was called and arrangements were made for us to go back out to Seattle.

I decided that driving at night when he was sleeping would be my best bet. Because I was super tired from lack of sleep and my check engine light has come on in the Envoy it was decided that my dad would drive us out. (He should be pulling into home now anytime....)

Joshua did great in the car and when we got here he was looking pretty good. (Go figure. Not that I mind that he looked better but it is REALLY hard to figure out what is wrong when his status changes so fast!) He had an awesome day playing and scooting around his crib. We got to see a lot of friendly faces of friends that we (we more being me) have missed. Joshua had an ultrasound and a repeat x-ray. There is fluid there and it is estimated to be around 120 cc's on the right. (There is about 6 on the left.) This is the same rough estimate that was there back in June. Dr Law has decided that he will be treated medically as opposed to physically. Meaning we will use medication to try and fix it versus tapping him and removing the fluid. The first thought is that we will trick his body by giving his Bumex to him at one time in the morning with the Diurell. The other change is the Sildenafil. We will increase the dose from 0.5ml 3 times a day to 1.6 mls 3 tomes a day. Dr Law says this medication will bring his body from Missoula elevation to sea level! Hopefully this does the trick. Part of the mystery is why on numerous occasions he looks pretty rough in Missoula but perks right up when we get here. (Could be all the attention from the nurses and staff?? He is an attention hound!)

We don't know how long we will be here but I will update and keep you all in the loop as to what is happening....the people that I know that are still following our favorite little Joshua peanut anyway! I hope that you are all doing well and enjoying the beautiful fall weather.

I decided to look back and see where we were a year ago. I didn't log anything for this particular date but I can tell you that we were in the room next door. I did post for the 4th and was reminded of the time I came back from dinner (I believe) to several people surrounding Joshua's bed and blood EVERYWHERE!! They were changing his dressing and his PICC line broke and he was bleeding out from the line. Because he was on Milrinone at that point in his life he got to take a trip back to the unit (CICU) until they did a surgery and repaired the line. Sheesh....that kid.

Here is a picture from 11-4-2008! Boy oh BOY has he grown this year. :)

This was taken while he was playing and exploring his crib. He acted like it was a whole new world! It was very fun to watch.

He was busy trying to get around the crib. He mastered the butt scoot as a way to get aroung backwards. Here is a shot of him deciding maybe he should change positions......Oh mom....you caught me. :)