Joshua's Journey

Spring 2011 Pictures

2011-06-12T00:55:00.024-06:00

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

2010-01-04T23:38:00.006-07:00

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!!

2010-01-03T22:05:00.019-07:00

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

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!?!?!?!

2009-11-22T17:04:00.002-07:00

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!!

2009-11-15T18:11:00.003-07:00

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

2009-11-12T17:32:00.002-07:00

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)

2009-11-10T13:11:00.003-07:00

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

2009-11-04T13:36:00.002-07:00

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....

2009-11-03T19:56:00.008-07:00

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. :)

October's Dr Appointment Update!

2009-10-22T19:51:00.003-06:00

We just made it back from Seattle and Joshua is doing GREAT! He is the best he has ever been and it seems that his heart is starting to function better! The news that I was most excited about is we won't have to go to Seattle monthly anymore! We will now go every other month and we get to see Dr Hardy here in Missoula on the opposite month! No more weekly appointments here in Missoula....YIPPEE. I am excited that Joshua has gotten to this point. What a milestone.

Joshua has been doing SO SO good. He has started to butt-scoot across the floor and is picking up new words all the time. It is so fun to watch him grow and learn. He really enjoys picking on his older brother and pulling Trinity's hair! Now I am not one to rush my children when it comes to growing up BUT he can grow out of this stage QUICKLY with no complaints from me! :)

It absolutely amazes me how far he has come in the course of the last several months! What a miracle baby (toddler) he is! We stopped by the ICU when we were in Seattle for clinic. Sadly, we didn't get to see everyone that we would have liked BUT really REALLY enjoyed seeing the ones that we did. They were all pretty surprised on how much he has changed. Dr. Mazor told me that he probably wouldn't even have recognized him....if he wasn't with his mom. I feel like sometime in the last month he just turned into a BIG boy.

Wowsers!

2009-09-21T23:47:00.003-06:00

I know that I am really REALLY going to regret not staying up on Joshua's blog for the last few months.

I must say that being home isn't exactly what I had imagined :-( I am still working hard to get my house in order and getting acclimated to being home after being gone for so long. I haven't been using my computer at all so....well....if I don't get on the computer I don't get this updated. BAD LEAH!

I will work harder about making sure to get updates loaded. I SWEAR!

So, our little Joshua is a rock star! Just in case you were having some doubts. ;-) He is still a behind as far as developmental issues go but he is trying really hard. His vocabulary is building and he is starting to get interested in moving and eating. Slowly but surely...he will get there.

He is as cute as ever and if course still a little tricky to figure out. He has been back and forth between Missoula and Seattle every 3 weeks. The only exception to this is this month. He made it the WHOLE 4 weeks from last discharge to his clinic follow up. We will be taking off to Seattle tomorrow and I am planning on just coming back home on Wednesday. Of course, this is MY plan but I am constantly reminded that it is not I who is in control, but the Lord.

Joshua is still battling with the chest effusions. We have started him on oxygen at night to see if maybe that will help. The thought is maybe the elevation of where we are is affecting him. He seems to be tolerating it pretty well.

I WILL update you after the appointment with the latest statistics.

I hope this finds you all well. Thanks for caring.

Leah

Joshua (like my other kiddo's) has really taken a liking to 'Bob Bob' (Spongebob). I was putting him in his PJ's one night and he kept pointing to the orange cowboy hats on them and questionably saying 'Bob Bob'. His brother has Spongebob pajamas so I decided that Joshua needed a pair also. He was SO happy to have them on. He woke up in the middle of the night and pulled his leg all the way up to his face, focused, said 'Bob Bob' and went back to sleep!! I thought it was so cute that he wanted to make sure that he was still in them. I love that he knows what he likes. Reminds me that despite everything....he is in ways, a typical almost 2 year old. ( Can you believe it??)

When we were in Seattle last I decided to get myself a tent camper. I have been looking at them for quite sometime. I was REALLY itching to get it out before the summer was up. At the end of August we took the kids out. We loaded up and headed to Kalispell. We ended up 'camping' out at my Aunt and Uncle's house. They have a little piece of heaven out by the Lost Prairie Airport. We had a blast being able to play at the lake and ride the 4 wheelers while still having the safety net of the house in case we needed it for Joshua. It was super nice to spend sometime up at their house with them. I have missed it so much! Even after 4 days they said we could come back. :) Joshua will need to work on his camping skills. I discovered that he is actually afraid of the dark. I had never thought about it but darkness (complete darkness) is something that he has never really experienced. We were in the camper and after all the lights were off his nighttime chatter started to sound a little distressed to I reached for my little mini flashlight. He pulled it from my hands and shined it straight into his eyes, holding it tight with both hands. So....we slept with the lights on the rest of the trip. He also won't stay under the darn blankets. I am going to have to invest in some blanket sleepers for him I think.

I am so so sorry!

2009-08-03T21:31:00.002-06:00

We made it home! It has been incredibly busy around here and I have not had time to get on the computer. I can't believe that I have gone so long without updating! UGH.
Of course, now that I have the time my laptop battery is about dead and I can't find the cord. :( I will get back on soon and post some pictures. I have lots of things that I want to document.
Joshua is doing great. He did have to go back to Seattle but it was only for a week. We are back home now. He is getting so strong and playful. I love having him home!! He now sits all by himself and is slowly building a vocabulary. He says momma, dada, grampa and bye bye. :)
I will post more soon.
Love and blessing to you all!

Friday June 26th

2009-06-26T17:55:00.003-06:00

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!

Over due update

2009-06-23T19:05:00.003-06:00

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 you....it 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 anyways....in 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 comedy....deal with it!"

2 weeks.....how do I loose the time!

2009-06-18T15:28:00.004-06:00

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.

Laughter is the BEST medicine! :)

2009-06-07T21:25:00.002-06:00

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

Pictures

2009-06-05T20:51:00.004-06:00

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!

Holy Smokes!

2009-06-03T15:07:00.002-06:00

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!!

Update

2009-05-18T11:52:00.002-06:00

Hit the floor and out the door!
That sounds like a nice little rhyme to sum things up! :)
Friday night Joshua was moved to the floor. He was perking up and they didn't feel like they needed to watch him so closely. Of course, I was pretty bummed because a few of the nurses that I REALLY wanted to see all worked the weekend and I just missed them. :(
I was in and out a lot on Friday. I still have Trinity and we have been really enjoying each other's company. I had to take my car to the shop in preparations to get her back to Shyla. (I used my mom's car to go get her.) Friday was B-E-A-U-T-I-F-U-L!! I am especially grateful because I had to walk back from the shop and back there to get my car. It ended up to be a huge mess and delayed parts but it is now fixed. :-) On my way out the door to go pick up my truck I saw the message light on the room phone and figured I might as well check it before I left....I do think I was stalling! I was THRILLED to hear that they had tickets to go see a concert. I was even MORE THRILLED when I was the first one there and was able to get tickets. Aunt Dorothy, Trinity and I went and saw Kelly Pickler and Taylor Swift at the Key Arena! We had an awesome time and the concert was super!
Saturday I came in to see Joshua and Dr Kemna came in and looked at him and said he looked great and could go home early in the week. YIPPEE.
Joshua is feeling much better. I will post some pics soon. He is just cutting his other front tooth and officially now has a 'big boy smile'. The days of gummy grins are now over. :( He still has a touch of a cold but isn't coughing much anymore and has completely stopped puking!
They have decided that if he handles the changes made to his diuretics yesterday that he can go with me back to the Ronald McDonald House tomorrow! I am so excited.
I am a bit saddened that today is my last day at APS but I am excited as well. Tomorrow when I wake up I will not have the anxiety of having to get right to work. I can go at my pace in the morning and just enjoy the preparations of getting Joshua out of the hospital without worrying about work and juggling tasks. Beginning tomorrow, I will be starting a new chapter in my book of life.

Thursday

2009-05-14T14:36:00.003-06:00

Just wanted to give you all an update. I know that many of you check and wait for news. :)
Joshua is doing a little better. He has another tooth. I find it VERY INTERESTING that every single tooth that he has had come in has done so in the ICU. And for clarification he was not already in the ICU. Seems a little fishy to me......fever, diarrhea, sodium issues......NEW TEETH!!
They were going to move him to the floor today but decided against it. He is like a little pendulum.....he was fluid overloaded and wouldn't ya know it...today....dehydrated.
He is breathing a lot easier but still has a pretty good cough. Fevers seem to come and go and Tylenol isn't really working to cool him off. He is a little cranky and Dr Baden thinks that is more to do with a M-O-M issue. I haven't been up there a lot in the last few days and they think he misses me. Very bittersweet. We got some super snuggle time today and he was loving me with kisses. (He was also loving Andi last night. He attacked her!! He was trying to kiss her with both hands on her cheeks and wrestle the mask off her (he is still in isolation) it was awesome!!
I will update again soon. So far holding steady.
Blessings,
Leah

Quick Update

2009-05-12T23:30:00.002-06:00

Hey Friends,
Sorry....I do know that I am a total slacker! I have been really busy wrapping up my last week of work, being a mom and playing! Trevor was here this weekend. We went to the beach and played in the sand for a bit on Saturday. The weather was beautiful! Then at the last minute I ran to Aberdeen and picked up Trinity. Since Joshua is in the ICU with 24 hour care and sedated I thought it would be a good time to do it. PLUS, I REALLY really needed something to take my mind off all the stress. Having her here has been a real blessing. We are having a blast.
Joshua is now extubated. :-) HOORAY! He is perking up but still is having some issues. Dr Baden thinks that he has bronchitis, but Dr Law isn't sure. So we are still watching that closely. He still needs the CT scan but we are waiting for kidneys to be strong enough to handle the contrast. He had an echo today but I have not heard the results. Dr Law is hoping to see enough improvement that he can determine the level of rejection. He had another steroid burst for rejection. :-( It was only rated at 1.5 and they don't usually treat until it is rated a 2 but because he can't handle the anti-rejection meds right now because of his kidneys the best thing to do was to burst him with steroids again. He seems to be getting over his Rhinovirus. Andi told me that he has developed a rash like redness on his knees and elbows tonight. It is hot to the touch. She called Reid (the fellow) and he was going to come and scope it out. I have no idea what this is but hopefully they can figure it out. *sigh* Always something with this little man.
Dr Law plans on keeping him in the ICU for a couple more days at least. My Aunt Dorothy from Alaska is coming down tomorrow to spend a couple weeks with me. I am very grateful to have the help and the company.

Friday X 2

2009-05-08T15:12:00.002-06:00

Joshua is going to go to the cath lab today at 5 and then for the MRI right after.
Dr Law will be bedside with him through all procedures today; Echo, cath and MRI.
Dr Johnston will be doing the cath and Denise will be putting him under. So glad that they are willing to work so late on a Friday night! :) The tricky part is that with his kidneys not working too hot they will be limited on the amount of contrast that they can use. There is a series of measurements and tests that will be ran. I will update when I know more. He will have a CT scan either Sunday or Monday. That also requires a lot of dye so it can't be done today.
He will be going into the unit (CICU) after the tests today.

Friday

2009-05-08T12:50:00.002-06:00

Quick Update:
Joshua isn't having a good day. He is very fluid positive to the point he can barely open his eyes. He is working hard to breathe and is more lethargic than yesterday. We are going to sedate him and do a very thorough echo at 2pm (maybe sooner). We have made him NPO in case he needs to go to the cath lab today.
He didn't respond to the diuretics last night and his BUN and creatinine (which measure kidney function) jumped up again ( BUN went from 63-68...I think that right and creatinine from .5 to .8...maybe even .4 to .8 Either way....bad news.). The bigger issue is why can't Joshua handle these things that we are trying to do for him. It is all pointing back to his cardiac function. Dr Law keeps using the term heart failure. :-(
Dr Law has talked to Dr Soriano and they are planning on doing a CT scan of his heart also. Hopefully these will give us some answers of what is going on.
What we do now; it is not CMV, a UTI or Influenza A. He did have a positive blood culture but we are hoping that it was contamination and have sent more blood with the AM labs to see. Not having a central line he would be at low risk for that but I suppose anything is possible.
Please pray for Joshua's health and comfort, the Dr's knowledge and mom's sanity!

Not just a pit stop.....

2009-05-07T13:18:00.004-06:00

Well friends,
Here we are again, puzzled. What started out as an electrolyte issue has again grown into something more. (What's new?) In the last couple days Joshua has been showing signs of infection. Either a cold or flu or something along those lines. He has spiked a fever of over 102, has green mucous in his throat and nose and throat diarrhea. They have tested him for RSV and Influenza A and both came back negative. They are doing a more extensive viral panel today. They is also concern that it may be something bronchial. They are watching him closely.
The worst of it is the concern of why his electrolytes get so out of whack with just minor changes. He should be so close to going home and shouldn't be so sensitive to med adjustments. So, it seems that there is more to the picture. This week he will have another echo. Next week he will probably have another cath. Depending on how he is feeling. We can't put him under if he is not feeling well unless it is an emergency. Coming off the ventilator if he is ill will be next to impossible with him. He is certainly headed for a cath but now remains a matter of when. Obviously the sooner the better. The main reason behind this investigation so to speak is the fact that Joshua's heart is not growing and it should be. His graft will grow with him. Dr Law said that there are 'kids' that had heart transplants 20 years ago and now their hearts are of adult size. We all know that Joshua has some interesting plumbing. Still having the the left SVC is creating some issues. He has basically an extra flow of blood. Instead of just making the loop through his heart like it should it is another little loop that it is following. It is basically a waste of resources. We need that blood to be cycling through his heart. His heart function has never been perfect. He has the same diastolic dysfunction that he has had. Drugs aren't seeming to make it much better. So after the echo and the cath they will get together and determine the future plan for Joshua. It is looking probable that he may need to undergo another open heart surgery. There is concern that there is some kind of scar tissue around his heart, probably from the seratia infection after transplant, that is prohibiting his heart from growing. Dr Law explained it along the lines of a sack around his heart. They will go in and see if they can remove it.
So, in a nutshell we are not as close to going home as we were last week. After the events of this week on the home front I am ok with that. The inspector came out to the house and it is worse that we had thought. The hot water has broken in the time from when I was home last at Thanksgiving and has caused even more water damage to my house. My dad, father-in-law and my uncle are working on getting that situation remedied but there is still the issue of the water damage to our home. I am waiting to hear what the insurance company says. My gut tells me that they will probably total my home and call it a complete loss. Please pray that if they do that it is enough to pay off the existing mortgage so I won't have to make a house payment on a house I don't have. I don't know exactly what we are going to do if this happens. Being that I no longer have a job I will not be able to secure financing on a new home. I know that God has a plan for us and I know that I need to be patient and just see what it is.
Please keep Joshua in your prayers. Looks like his road will be taking a little unexpected detour.
Love and blessings,
Leah

sigh Monday's are not my favorite lately

2009-05-05T02:36:00.002-06:00

So here we are Monday again.....and Joshua is BACK in the hospital.
We had to go get labs today and we were asked to stop in at clinic again today to follow up from last weeks little admission. They looked at him on Friday too and just wanted to keep a close eye on him. He had a great weekend. My mom and Trevor were here to pick up my dad and drop off Theresa for the week. Joshua LOVED seeing them and played with Trevor. Trevor decided that he was going to sleep on the floor by Joshua's crib last night. Long after Trevor fell asleep Joshua was still there smiling and blowing brother kisses! It was the best. :)
Anyway, we saw Dr Law (for the first time since our 4-10 discharge. (It was very nice to see him again.) Well Joshua appeared a little wet again. We had decreased his diuretics again on Friday and upped his Cyclo. He was still producing tears and had a wet mouth so even though his wet diapers took a little decrease I wasn't too worried. He was acting just fine. Dr Law also wanted an xray. He told me to go get labs, then the xray and then come back to the clinic so he could tell me the results. Well his xray was maybe a smidgen better but nothing to write home about. Dr Law decided (at that point) to write Joshua a prescription for Sodium and then follow up with us tomorrow. Well in the time that he had finished the script and got to the room we were in the labs had came back...THANK GOD! I knew by the look on Dr Law's face the news was not good and I shouldn't expect to go anywhere any time too soon. I joked with him about knowing before he opened his mouth. A talent that comes from seeing the same doctor every single day for several months! :) The labs showed that his sodium was low (125), BUN (mid to high 80's...I can't remember exact #) and creatin (0.7) were up, even more from last week. This combination puts Joshua at very high risk for seizures and renal failure, so he was admitted. Dr Law didn't know what the immediate plan was going to be. He did say that we would stop the Cyclo because heart rejection at this point in time was the least of the worries. If he starts to reject we will deal with that later. He changed the diuretics and changed some of the heart meds. He is going to go up on the Diltiizem, stopping the Captoprill and starting doing something with IV fluids.
Please keep Joshua in your prayers as we work through all of this. Very scary stuff.
Blessings,
Leah

Joshua's Journey

Spring 2011 Pictures

Pictures

HAPPY SECOND BIRTHDAY MR JOSHUA JAMES!!

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

Pee Pee Celebration!!

Thursday....not much good news today

Tuesday (Change of plans)

Quick Update

Back Among Friends....

October's Dr Appointment Update!

Wowsers!

I am so so sorry!

Friday June 26th

Over due update

2 weeks.....how do I loose the time!

Laughter is the BEST medicine! :)

Pictures

Holy Smokes!

Update

Thursday

Quick Update

Friday X 2

Friday

Not just a pit stop.....

*sigh* Monday's are not my favorite lately

sigh Monday's are not my favorite lately