Between the boys birthdays & the holidays I am behind on blogging!
Gavin is doing well in school. He absolutely loves his teacher & the fact that he has his 3 BFFs in his class!
We carried on the Gavin/Brandon birthday tradition this year. We got to spend Gavin's 7th birthday in Cleveland with the Weedens. It was a fun trip and we made some great memories! Thanks Weedens! By the way, stay tuned... Some exciting stuff coming up regarding the foundation!
Medically speaking Gavin is doing as well as he can be. He got a bad stomach bug at the beginning of the school year that put him in the hospital. Not fun! So here's a little PSA: keep your kiddos home when they're sick, it can be life or death for others. End rant. :)
We got to stop the lovenox injections and then insurance decided to no longer pay for his home health nurse visits, so we spent a lot of time going to get labs. Every time I step foot in the basement lab at SF it reminds me of a not so wonderful time. Right after Gavin's second open heart surgery (3 months old), he became addicted to the narcotics. The doctors started him on methadone. Basically, methadone is legal heroin. Apparently you can only get a script filled at a hospital lab. Which made for a pleasant trip with a screaming baby whose pupils were dilated and hair was falling out. I don't miss those days. So let's just say I was less than thrilled that our insurance refused payment for home health. Not only was the lab a reminder of horrible times but also a place filled with germs waiting to attack my immune compromised son.
We FINALLY received our home INR kit to test Gavin's levels ourselves. It's great that we can do a simple finger prick (which doesn't require as much blood) & do it from the comfort of our home! It's even better that I can call the nurse myself and we discuss therapy changes over the phone. It works out nicely!
Gavin has a pacemaker check next week, prayers specifically that all is well. Our last pacer check showed some sort of "noise". Cardio is hoping it's just "noise" and not anything alarming. We will know more next week.
Gavin had neuro and opthamalgoist follow ups- everything checking out good in those departments! We need to get Gavin eating more! He has gone down on the scale percentile. Somedays are better than others on getting him to eat. But even on the good eating days it's not enough. Because he is only working with half of a heart he is burning triple the amount of calories a normal heart healthy child his age. To top it off he's hypoglycemic which makes things more difficult. Waiting to hear back from doctor on where we go from here with that situation.
I know from the outside just looking at Gavin he seems so perfectly fine. But I just want to be honest for a minute. It's been a struggle. And before I go any farther, I know there are children in worse shape than Gavin, I know there are the littlest angels in heaven right now. I know there are parents that are having to make some really difficult decisions for their sick child. I know this and I try through every struggle to remember them and to find joy and peace. But sometimes it's hard, really hard. Sometimes I just cry myself to sleep. Sometimes I can't sleep. Sometimes I yell at God and ask him why? The daily medications (3 times a day), the blood draws, the finger pricks, the pacer interrogations, the input & output, the anxiety attacks, consoling him when someone has made fun of his "gross" chest or how small he is, playing football (which is so minute to me but something major to a little boy), the amount of doctor appointments, the "what ifs", future surgeries or procedures, etc, etc. Its hard. It's hard. It's hard.
Today as I had a day of struggle, I opened my devotion and found this... But the Advocate, the Holy Spirit, whom the Father will send in my name, will teach you all things and will remind you of everything I have said to you. Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. (John 14:26, 27 NIV) These are the words of Jesus speaking to His disciples before His death. Jesus promises to send them the Holy Spirit, who will fill them with strength and comfort. God has given us a spirit of peace and not fear, so when we are troubled or sad we know that we can count on God to comfort us. When you are sad or afraid, do you feel the presence of God? He is there for you!
Thank you Lord for giving me peace & strength when I feel so weak!!