Major Update on Gavin’s missing medications

Throughout the day, I had about half a dozen different conversations in regards to Gavin not receiving his IVIG medications and supplies. I spoke with his doctor, his insurance case manager and the head pharmacist at the pharmacy we want to switch to for his supplies.  Let's get this out of the way first.  Gavin's doctor's office was finally able to get things straightened out with our current supplier. The supplier appears to be who dropped the ball on this one.  Setting aside blame and focusing on what matters most at this very moment. I can share that Gavin's medications have been reordered. They should be arriving on Wednesday.  How am I going to prevent this from happening again?  The simple solution to fix this is going to be complicated…


My son is missing his critical medications for the month

A large part of my stress load today is the result of Gavin's IVIG supplies never showing up.  I was contacted on Friday by the supplier who said that Gavin's shipment is delayed because they have been unable to get refills from the doctor. They were going to fix this yesterday but that never happened.  I spoke with Gavin's doctor today and they have never been contacted for a refill or it would have been done immediately. I believe them because we've never had a single issue with them in five or six years.  The doctor's office also stated that Gavin current script covers him through May of this year and he doesn't even need a refill yet.  They are currently working to resolve this and have checked in with…


We have a problem that needs to be resolved today

If I had to describe how I slept last night, I would probably say shitty. I had a really hard time getting comfortable and would wake up because my back was killing me.  Then at some point, both Elliott and Emmett took turns waking up.  Despite a rough night, I'm actually in a pretty good mood. Lizze has an appointment this morning and Gavin and I will be walking while she's there.  We have a full day of appointments ahead of us today, as well as some problems to overcome. The biggest one being the fact that we haven't received Gavin's IVIG infusion supplies yet and were unable to perform his infusion yesterday.  Resolving this will be the priority today.  I hope everyone is having a decent Tuesday thus far.…


I give up

After pushing myself to accomplish most of what I needed to get done, I finally gave in and laid down for about two hours.  I feel better having just woken up but I'm still getting sick.  On the positive side of things, Gavin just woke up from his nap and is still feeling great. It's probably safe to say that either there was no Salmonella in the raw chicken he ate or his body was able to fight it off.  Either way, that's a good thing. 


Today’s a very special day

I wanted to share a something about why today is so special for our family. It was on this day back in 2000, that Gavin was born. Mr. Gavin is seventeen years old today and we are so blessed to have him in our lives. He's come such a long way over the years and I couldn't be any prouder of the young man that's he's becoming... ☺ Happy Birthday Gavin. We love you very much..


Reflecting on this past weekend has taught me 3 things

The four day weekend is almost over and we have lived to tell the tail. :-) All joking aside, it seemed like a longer weekend than it actually was. The boys were the boys and that's not a bad thing. They were all challenging at times but I have great memories with each of them over the past four days. Challenging doesn't always mean bad.  What challenging typically means for me is exhausting. This weekend was exhausting even though we didn't go anywhere. It was exhausting listening to Gavin and constantly trying to stay at least a few steps in front of him. It was exhausting trying to get the two youngest to eat what we bought at Aldi's. I would say that in most cases, we were unsuccessful in making Aldi's…


I’m being interviewed today

Fun fact, I'm getting interviewed this morning by Susan Wheeler-Hall BSW, NGH. Susan is an Author, Coach, Educator, Speaker and Radio Host.  She'll be interviewing me around 11 am this morning. I'm not sure what we'll be talking about but it should be fun. The boys are home from school today and I'm hoping they will cooperate.. ☺


What his stomach looks like after an IVIG infusion 

I wanted to take a minute and share a bit of insight into what Gavin experiences in regards to his IVIG Infusions. Gavin receives these medically necessary procedures twice a week and will do so for the rest of his life.  These infusions provide him with the immune system his body naturally lacks. Without these infusions, his body would not be able to fight off infections.  While these treatments are a blessing, they aren't  always pleasant.  The pictures below show what the infusion sites look like and it's incredibly unpleasant for him. Gavin has almost no body fat and so all the swelling is from the infusion