Monday, September 19, 2011

tough guy

gavin's eye surgery was last thursday at phoenix children's hospital. we are very pleased to report back that everything went very smoothly. we arrived at the hospital around 3:30 to check-in. poor gavin wasn't able to eat past 10:00 that morning but he surprisingly did very well with that. his surgery was scheduled for 5:00 in the evening. jeramy and i both felt at peace with the procedure so thank you to each of you who prayed specifically for that.

phoenix children's was great! the anesthesiologist, who has helped with gavin's past procedures, allowed me to go back to the operating room with him. i was able to stay with him until he was asleep. i have to say that although i am glad that i got to stay with him since he was so scared, i also had a much harder time with this surgery than past surgeries. i think it was a combination of this being a more invasive procedure as well as witnessing the process of putting him to sleep. it was a very long hour to wait but thankfully, i had jeramy's shoulder to lean on. in addition to that, my parents also came and waited in the waiting room. it always helps me to have them there. also, two of our friends are child life specialists at pch so they accompanied us back to our room prior to gavin's surgery. i felt much more at ease knowing they were there. they also brought fun toys for gavin to play with while we waited.

once the doctor came to get us after the surgery was over, we started making our way back to the recovery area where gavin was. i heard him before i even walked through the doors. i'm not going to lie, i didn't listen to a word the doctor said at that point-again where jeramy comes in as such a support. i scooped up gavin as he cried the saddest tears. children coming out of anesthesia is not a pretty sight. he was keeping his eyes closed in a tight squint as little blood-tinged tears rolled down his cheeks.

i was nervous being at a hospital that i was unfamiliar with because all of his procedures have been at scottsdale shea. a dear friend prayed specifically for that and i was amazed at how God totally provided in a way that i know had nothing to do with coincidence. as i was holding gavin, his nurse came over and i was stunned to see a man who had been gavin's nurse twice in the picu at scottsdale shea. instantly i felt relieved as i knew that he remembered exactly who gavin was and who we were as well. it turns out that he just transferred to phoenix children's. gosh, i love how the Lord works and i love how He answers prayer.

we were able to go home later that evening and i was amazed at how well gavin was feeling the next morning. he did need to go back on oxygen for the first night do to the fact that the pain meds had really knocked him out. when that happens, he becomes a "lazy" breather, which is to be expected. he only needed the oxygen that night and then was back to his old self. the day after his surgery was filled with high highs and low lows. you could tell that he wanted to play but that he was also still in a great deal of pain.

his eyes look pretty good today. they are a little bloody still but we were told to expect that. i actually think that he is seeing things more clearly. our physical therapist told me this morning that he looked more engaged so that's wonderful. he is also really taking a big interest in our dog, fitch. when i ask him where the doggy is, he finds him and gives him the biggest smiles. he seems a lot more engaged with me and jeramy as well, locking eyes with us and keeping his focus. yippee!!

we give him antibiotic ointment 4 times a day to help lower the risk of infection and we see his eye doctor this thursday for a follow-up. although his eyes look much straighter, we will not be able to tell if the surgery was 100% succcessful for quite sometime. there are really three options moving forward. one, the surgery could be a complete success with no need for glasses or additional surguries (obviously that is the scenario we are praying for). two, the surgery could be successful enough that he will still need glasses to correct any additional crossing without any future surgeries. or three, that both the surgery and glasses are not fixing the problem and that he requires additional surgeries. i am cautiously optimistic that this surgery will be our last.

thank you for praying specifically for a good outcome. i will let you know what the doctor thinks on thursday.

Wednesday, September 7, 2011


gavin has been doing so well lately. he has been making strides in so many different areas. he has been eating so well lately and his reflux has been pretty minimal-only about once a day, if at all. he has occasionally been taking some baby food too. we are so pleased with this part because, as any mother knows, feedings are the most frequent thing we do for our children. when feedings are tough, it really can alter the entire perception of how your day went. needless to say, gavin has been eating quickly and efficiently. we thank God for that blessing.

he has also been sleeping so well! he has been going to bed around 6:45 and has been waking up between 7:30 and 8:00 in the morning. in addition to that, he has also been napping for 2 hours in the afternoon. he recently went to one nap a day, which i love! here is a picture of him after he fell asleep in the car on our way home from church. isn't it the worst when they fall asleep 5 minutes away from the house when it's close to their naptime?? oh well....still so cute!!

gavin has also been making a lot of strides in therapy. he has been working on bearing weight on his legs and sitting independently. he is so close! he was invited to another 3 day NDT clinic (with his occupational therapist). i love how much they have taken a vested interest in him. i am so thankful for each of those women.

just a reminder that tomorrow is gavin's appointment with his opthomologist. please keep us in your prayers as we will most likely schedule surgery for his eyes. our appointment is at 8:20. we will update as soon as we know anything concrete. thank you everyone!

Thursday, September 1, 2011

looking back, looking forward

tonight, i looked back at all of our posts in 2010. i began in march when we first found out about everything going on with gavin. i have not yet caught up to present posts. to be honest, i am too emotional tonight to read any further. it's weird how i have forgotten some of the specific, terrifying ordeals, yet i can instantly go back to that day as soon as i read it. actually, it seems like i have done that a lot today.

this afternoon i brought his baby swing downstairs because his occupational therapist wanted to see if he still fit in it. i placed gavin in it and turned it on. as soon as the music started playing, i became shaky and anxious. i remember each of those songs. i remember them playing the first months that we had gavin home. i remember how sick he was and how tired he looked swinging in it daily. i was also instantly taken back to how my house looked when gavin was first home. it looked like a hospital. jeramy and i took turns sleeping on the couch downstairs as we took 4 hour shifts at night while the other one slept. there were machines, monitors, cords, tubes, feeding pumps, and numerous alarms. i stood there stunned at how fast all of those memories came back from a song and, as you can imagine, i turned the music off rather quickly.

then, this evening, i was holding gavin after he finished his bottle. ironically, i was holding him while i was wearing the same exact tank top i wore when i held him for the very first time. the nurses would place him right in my shirt. and now, i cry thinking about how big he has become...much too big to fit in there now.

i'm glad i looked back at those blog posts and i'm thankful for the tears i shed after hearing those songs on his old swing. gosh, i have been crying throughout writing this entire blog post. in some ways, it is hard to look back and become so emotional, but in other ways, it's really good for perspective. gavin has come so far and i am beyond thankful for what God has done in his life and in ours. i am also extra thankful for each of you tonight. you stood by us and continue to stand by us as we go through this journey.

i am feeling convicted tonight. i am impatient. i sometimes doubt God's faithfulness and His goodness. i, too often, ask Him where He has gone and why He has forgotten about my family. but looking forward, i will remind myself that God is who He says He is. He is faithful and He is good. i need to be patient. the verse that is on the green bands that we had made for gavin is jeremiah 29:11 "for I know the plans I have for you declares the Lord. plans to prosper you and not to harm you. plans to give you a hope and a future". i need that reminder tonight because so often, i recite that verse without fully taking in its truth. Father, thank you for the reality check today.