Wednesday, April 27, 2011

tough week

sunday fun day? unfortunately, not this Easter sunday. gavin began to get sick on saturday night. tracee and i listened to him moan and groan all night off and on. it's a horrible feeling as a parent when they are too little to talk and also too little to really give many medicines to. in times like that you just have to grind it out. well, we were all up at the crack of dawn on Easter sunday - praising the Lord for conquering the grave (amen) and also praying for a quick healing of whatever was bothering gavin. it became evident that gavin was having a run in with a stomach virus as he threw up his entire bottle just before heading to church. thankfully, he did great during the church service at bethany bible church. it was awesome to finally get to church as a family and to be able to do it on Easter. kent delhousaye preached a wonderful service on the fulfillment of all of the prophecies given about Jesus and how it is not scientifically possible to duplicate what He did. moreover, the fact that Christianity provides a way to God through faith in His son Jesus - there is no working your way to salvation. it is by grace that we were saved, not of our own doing but of God's. it is a gift.
for all of the mistakes i make i'm sure glad to know that i'm saved from my sins through my faith and not by a list of works i have to attain.
we made it through church and had tracee's family join us for brunch. that didn't go so well. gavin was miserable the whole afternoon and just couldn't get comfortable. everything we fed him was coming right back up. we were set to go to my sister's house to meet up with my side of the family for a late aternoon meal but we had to cancel. :-(
by monday afternoon tracee and i were both sick. i headed home early from work with horrible stomach cramps and tracee was feeling the same way. i had my folks come over to keep an eye on gavin for a few hours just so tracee and i could lay still! we were both throwing up at this point and things were getting rough. we prayed that gavin would sleep through the night and thankfully he did. tracee and i on the other hand did not. i spent most of the night around the toilet praying for mercy. i called my dr. and had them call a prescription in for me which really helped calm things down for us. g was still having a hard time fighting through this bug so we were concerned about his dehydration.we kept pumping pedialyte through his g tube as much as he would tolerate. the nurse told us "if he doesn't pee by 1pm bring him in." we knew what that would mean. they had already told us that there wasn't much they could do for him with a stomach virus other than refer us on to the hospital to get IV fluids if he was dehydrated. you all know how we feel about the hospital and that's the last place we wanted to take gavin. we decided to give him a bath to help him feel better and hopefully lay down to take a nap. it was almost 1pm. i stripped off his diaper and sure enough it was wet! (it really is the little miracles in our life that we cling to these days)
late yesterday afternoon he began to take bottles again - 1oz at a time and he was slamming them down and i'm not even exagerating. he was hungry! the food stayed down so we were able to get him several bottles before bed. today he has been on a 3oz bottle schedule and keeping them down so that is great news. both tracee and i are sore and recovering from this nasty virus. stomach flu is the worst.
i weighed gavin this morning and he has lost about 1/2 pound due to this illness. we have had to go up on his oxygen from 1/8 liter to 1/2. that's not the direction we want to go but understand that when he gets sick and his body gets stressed that those things will happen.
the next 3 months are going to be really critical for gavin's development. all of his therapies and support physicians are really wanting to see him make a lot of improvements. we do too. a lot of the things gavin is doing are at the age of a 5 - 6 month old. it makes sense to us. he was born 4 months early and then spent his first 2 months of life heavily sedated and not really in a position to do anything but lay there. that is 6 months of time that he didn't have to be growing and developing like a full term baby would coming into this world. we ask that you continue to pray for complete healing in every area of gavin's life. also, please pray for us as we battle this out everyday too. it is hard and it takes its toll. we have a hard time sometimes seeing what God is doing. i'll keep saying it but we are ready for a break. we want some rest and relaxation and we want gavin to be able to start experiencing life off of his back and sitting up and enjoying his toys from a new perspective.
we love you all - thanks for your support!

jeramy

Sunday, April 17, 2011

gavin turned 1! april is busy...

first and foremost, i want to thank each and every one of you who participated in gavin's birthday in one form or another! it was a beautiful celebration. the sun was shining last sunday afternoon and the air was cool and crisp. we woke up to not a cloud in the sky after a very cold and dreary saturday - it only got up to the high 40's i think with quite a bit of rain! once again, God is so good to us and blessed us with a beautiful day to celebrate. the theme of his party was "carnival" so we did EVERYTHING we could to make it a carnival! i'm so thankful for such a creative and talented wife. tracee was very busy for weeks in preparation of gavin's party. well...everything came together beautifully! we had a hotdog cart to serve hotdogs to our guests as well as a popcorn machine, beautiful cake pops that tracee made, and a number of magnificent sugary treats for all the kiddos to nibble on!  tracee had little paddle balls for the kids to color and take home and call their own as well as a sack race that the kids could partake in. all in all, it was beautiful and perfect! around 3:30 or so we got to doing gavin's smash cake. he definitely wasn't sure about that but both tracee and i helped him as he tried to figure out what to do. we first tried him in his high chair but he just wasn't having it. he still has a lot of difficulty sitting up in that thing and with everyone gathered around and singing to him and laughing, etc. it scared him. :-) 


we moved him to the grass and helped him "dig in" to his cake. that was a lot of fun for us and i'm sure for him too!


as gavin's party wrapped up, tracee sent each of the kids home with their own little parting gift. there was a message from gavin attached to each of them that said something like "thanks so much for coming to my party..." i don't know for sure because, truth be told, i can be horrible with paying attention to little details like that! (my bad.)
after we completed most of the cleanup, the family sat around and began to unwrap and break out all of gavin's toys and goodies he received. oh my gosh! gavin is truly loved and supported - our play room here at the house (our living room converted)  looks like a mini toys r us - we are so excited for all of those toys and to watch is development improve as he gets a chance to play with them. thank you to everyone! it was really great to have my grandma von in town from northern california to be here for his birthday. it was also especially fun to have tracee's nanny and her aunt kelly and kids with us. for her aunt kelly and her kids, it was their first time meeting gavin. as a matter of fact, for a lot of people it was their first time meeting gavin. he has been so critical and so under wraps for so long that his birthday celebration was finally the opportunity to really expose him to all of our friends and family. FINALLY!! we are so excited to be able to begin to do more normal things again and visit with friends and their kids, etc. RSV is such a scary respiratory virus that is so prevalent during the winter months and with gavin's lung disease, it could have been fatal for him to contract it. obviously, it made us live like a recluse family but we are over that now!
along those lines of "getting out" and living amongst society again - i have to say that it's been hard for us. here is where the vulnerable and candid part of the post comes in. tracee and i have had a difficult time when we begin to see where other babies are at. naturally, we are at that age where most of our friends are starting families too and so we are now beginning to see these babies interact and the level of their development. i know that for us it creates a lot of different thoughts and emotions. i think the strongest emotion for both of us is fear. we fear what gavin's long term outlook will be and it becomes so difficult to stay in the moment and focus on the here and now. as a parent you want the absolute best for your baby. tracee and i would and will do anything and everything possible to give gavin the best we can - to give him the best opportunities to succeed and develop. but, in this journey of ours, there are so many things that are out of our control that aren't up to us. i don't know if i have ever wanted something so bad as to have gavin gain the core strength he needs to sit and play and begin to crawl, etc. i just know that he would begin to experience life in a different way and it would really propel him to a new level of development because he would be seeing everything differently. but, as i said, it's not up to us. we do his physical therapy every week and tracee works with him a ton - he sees his developmental specialist and everyone pitches in to help gavin along.
where are you in this process God? even Jesus in his final and darkest hour asked "my God, my God, why have you forsaken me?" have you ever felt that way? i certainly know that if Jesus had that kind of thought and expressed that kind of emotion that it's a-okay for us to do the same. we serve a big God who can  handle that and clearly has us in His hand and has a plan for us.
nonetheless, things are hard. life continues to drag us through some difficult things. i have found that most people can endure things when they have a time table on how long it will be for. with us, it has been and continues to be open-ended. that is really hard, i'm not gonna lie. i pray with such fervency for God to heal gavin on the spot! my heart is broken for the Lord to intercede and for complete healing to take place for gavin. i've never wanted something more. i've cried so many times out of my heart's desire for gavin to experience life the way all of these other kids around him are. tracee and i are just a couple of people trying to be faithful and striving to follow the Lord in all of this.
i'm a desperate man. i am. i've heard that the definition of insanity is doing the same thing over and over again yet expecting different results. i guess i'm insane. i keep praying over and over again - trying the same things with gavin over and over again - and expecting different results! i don't want lose that perseverence.
the truth is that we are stuck. we are stuck in a really hard place in life. we have been seeing a wonderful counselor who has been helping us to navigate through some of this stuff and that has been our saving grace in so many moments. in a session the other day it was mentioned "i bet if we scanned your brains right now we would see a lot of post traumatic stress disorder going on." no doubt that is happening to us. throw that in with a tough economy and uncertainties in that area of our life and it leaves us stuck. we feel hopeless at times. that feeling sucks. i'm not sure what to even ask for right now. so many of you have been so faithful to us - it has helped so much. there's not much pride in this season of our lives to keep us from asking for help and direction and prayers and support on all levels.
if God leads you in a particular situation with our family - I ask that you listen to that leading and share it with us. See...for us, it's through those things that help us see God at work and experience Him beside us in this. it's why i cry when i read the responses on the blog or when we get cards or messages of encouragement, etc. it feels good to know that we aren't alone.


jeramy