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!