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A Long Overdue Update (Sorry!)

Oh my word! Where do I begin? It has been a crazy summer and now school is back in session. How can that be…where did our summer go? Well, I can tell you 48 days of it was spent in the hospital.. UGH… Let’s do a recap.

Bo spent all of June, a few weeks of July and 10 days of August in the hospital. On August 7 we traveled to Boston to see a specialist there. He was amazing, sat with us for over 2 hours. We all had a ton of questions. Some are not yet answered until we get some results. So we know. Bo has a microbacterial infection in his liver, lungs, and his bone marrow. His port has been accessed since May 28 so he can get an antibiotic every 8 hours of his life. STILL, even at home, he is receiving that plus 4 other antibiotics and on August 10 we added another – Cipro. And that is when he had his first seizure.

Here is the thing, I can handle vomit, poop, blood, needles, open wounds, accessing ports, PICC lines, Art lines, central lines, finger sticks, bloody noses, bloody knees, watching them drain his skinny knees… BUT I CAN’T handle watching my son have a seizure!! It is so scary. It never gets easier either. This is new for us and all of them have been when he was spiking a fever. His CT, MRI, EEG and spinal tap were all normal. Thank God!

So now he is back to his original 4 antibiotics with a goal of getting rid of the Port antibiotic as soon as we get the okay from his doctor.

He has also started getting IVIG. IVIG (intravenous immunoglobulin) is a medicine used to boost the body’s immune system and make it better able to fight disease. It is made from donated blood fluids. He was supposed to get it every 4 weeks but it recently changed changed to every 3 weeks.

His levels have been so bad that we have decided to hold him from all of his therapies and preschool until his little body can catch a break. It breaks my heart to have to do that but I need to do what ever it takes to keep him healthy. One sad thing is that we have to postpone our DREAM Factory trip. I hate this for us, for my kids…but I can’t risk getting to Florida and Bo’s body not being able to handle it. We will be going, just not until February or April.

Now, let’s talk about Shakin’ For Macan… I have no words, other then AMAZING!!! Truly, truly amazing, Heather, Lisa and Kellie did the most amazing job ever. It was beyond my expectations. It was simply amazing. I have so many people to thank that it would be to hard to name all of them and I would feel terrible if I forgot someone. That night was one of the best nights of our lives. It was truly unbeliveable to see so many of our family and friends and people I didn’t even know come out to help us celebrate Bo.

I have said this before – I worried about no one coming and obviously that didn’t happen. Not even close actually. The event sold out and we had to tell people they couldn’t come! (SORRY ABOUT THAT.) I can’t thank you guys enough for all of the donations, the AMAZING FOOD (thank you Jon Russells) for that! It is so overwhelming to think it was all for us, for our family. People do still amaze me with their kindness. This world is filled with amazing people. Not sure if you guys follow us on facebook, but Bo does have a facebook page. A few weeks ago my husband wrote on it and I wanted to put that on here so everyone could see it. Many times he stands back and dosen’t say much, so when he did say something it was so beautiful and I know it came from the bottom of his heart. He, too, is so thankful for all that people have done for us.

 

Below is the post that was written by John, or as Bo often calls him, Babe.

I have so much to say, but I don’t know how to say it… I have some many people to thank, but I don’t know how to thank them…

Each and every person that has that has reached out to help us in one way or another have their own lives, families, problems and
life obstacles to overcome… but yet they still take the time from their family and lives to help us out… We know that the world does
not revolve around our family and we feel guilty for people having to always do things for us or help us out. How can we possibly thank everyone? Where do I even start?

The amount of people that has been dropping things off at our house… the kids that have been doing their own fund raising… The people who are organizing this big fundraiser… the people that are helping out at the fundraiser… the people that are coming to the fundraiser… the people that are helping… the people that bring us food when Bo is in the hospital… The people that just post a simple supporting comment… We are truly overwhelmed.

Last year I was blown away with the support that we received when we found out we had to go to Cincinnati. This year, we found out that we needed to go to Boston and I received texts and e-mails from people before I even knew we were flying that they want to help pay for our tickets. I received an e-mail from a friend
with confirmation that our hotel was booked even before we had plane tickets… Someone close to us sent us a check that made our jaws drop… I can go on and on and on… I can’t possibly thank everyone the way they need to be thanked…

As a family, we fight each and every day for Bo and when I say family, I mean everyone that is in our life. With all the love and support that we have, it helps our fight. With all the help and support, it lessens our load so that we can try to focus on what is important.

If it was not for my Dad being retired or my Mom being around we could not make it. If it was not for Carolyn’s parents, sisters and yes…even her brother… We would not make it. I am very thankful that I have a really strong wife, but she is even a stronger mother to our kids. It kills her to have to spend so much time away from our other three kids or not be able to give them the attention that is needed. Carolyn gets her strength from her family. Who ever said that in-laws are a pain in the butt…well, they married into the wrong family! In all seriousness, each and every sister is there when we need help with getting our kids to school, giving them rides to activities or watching them when needed.

In my day to day life, I like to tell myself that nobody cares if you are sick or hurt, so suck it up, make no excuses and keep moving forward…well, over the past 4 years, I found out that people do care and they are there to pick you up when you do get knocked down!

As a family, we are scared of the unknown with Bo. With the day to day support that we have, it helps our fight. When I think I am having a bad day or feeling sorry for myself, I only need to think about the hell that Bo has gone through and is still going through. As a family, we could not make it without the amount of support that we have.

If you are reading this, I hope you understand how much your love and support means to us. We will never be able to repay you, but we will try and we always make sure that we give our support to others in life that aren’t as lucky as we are.

We thank you!

John

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I couldn’t have said it better myself!! Thank you SO much.

C

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