Lil Marks heart

Lil Mark had a cardiology app this week. He was very nervous and eager to see his heart on the screen. He kept telling himself that if his brother can do this all the time then he would be fine.

He did such a great job at laying still. He wasn't quite sure about all the stickers on him.

We got the best news ever. The hole in his heart has closed. He will no longer need to see cardiology unless he has any issues. 

Playing catch-up.

A couple of weeks ago we attended a funeral in Indy. The boys were able to spend some time with all their friends that come to visit when we are at Riley. Normally Broc is in a hospital gown and stuck in bed but this time he was able to have fun with all his friends no matter what their age. Mark and I were able to spend time with our friends too from Indy. Mark was also able to meet many of the friends that come to visit us at the hospital too.

Monday we had plans as it was Lil Jaydens last day before school started. Due to the torrential rain we had to opt for Chuck -E- Cheese. Everyone had a great time.

Since Broc's needs are becoming more and more we are having a fundraiser to buy some therapy equipment for home. Here is the link to buy a cool t-shirt.

www.booster.com/brocsbuddies3

September is proving to be a very busy month. Broc will be having an ENT app where we will possibly discuss surgery to close is laryngeal cleft. Lil Mark will be having his brain and spinal MRI to see if he will need Chiari surgery.

Thank you for all the continued love and support. 

A crazy couple of weeks

Brocs line has healed very well, eventually. Unfortunately his body does not do very well with healing anything. We were able to attend the 2 days of the convention that we missed. What a programe. It was beyond awesome.The brothers and sisters were so encouraging and helpful in making sure we had everything that we needed to enjoy the convention.

Broc unfortunately had a very difficult time with pain and we had to medicate him most of the time just to keep him comfortable. Lil Mark slept most of the time and we were not quite sure why but figured maybe he just needed the rest. 

We have since learned that Lil Mark has a chronic mono infection which has led to chronic fatigue. It has been really rough for him. It's not contagious but just leaves him extremely fatigued and not feeling well at all.

We have also been to visit Broc's Palliative Care Team to see if there is anything else they can do to help him with his pain. His team is really big on natural meds which we love. We have increased some of his meds and they seem to helping. His viruses are causing his ileuses to become very painful. Unfortunately this is ours and Broc's eventuality. There is nothing more that we can do for him but keep him comfortable. Some days are better than others. Broc needs to have iron infusions to keep his iron and blood levels stable as his body does not absorb iron. We can tell when he is in need of it before we even test him for it.

We have also started schooling the boys but due to our circumstances and life in general we are not able to school everyday. That is why homeschooling allows us the flexibility we need. 

Nothing like pizza for lunch on your first day of school.

Lil Mark is still having lots of issues with migraines. He will be having his MRI's in September to see how far his Chiari has progressed. He is starting to learn how to limit himself when he is playing. Ehlers Danlos can be a very mean robbing children of their childhood and playing until the drop. He can have a great day playing hard but will pay for it the next day with lots of pain. Thankfully we know what to do and when to stop so that we are not making things worse. So when you see my children and they tell you that they are tired or really sore cause they had such a great time playing outside please don't tell them that they are too young to be tired or sore cause it is REAL.

There are lots of things that our family deals with on a daily basis but we don't share because its too difficult for others to understand. As parents we are doing our best to teach our children about Jehovah and take care of them medically as best as we can. We are also making great memories as we go along. They may not be the memories that other families will make but they are our memories.

I'm so proud of my husband Mark. He learned how to do Broc's TPN last night and hooked him up too. It is such a relief for me to know that someone else can do this for Broc. Having Special Needs Children really brings its challenges and trials but it has brought us closer together as a family. We have also come to rely on Jehovah a lot more to get through the tough times. Being a Special Needs Dad takes a really special person. It requires an extra measure of patience and everything else. He works long hours and then still comes home and helps me with things that need to be done around the house as well as all the medical things we need to do for Broc and Mark. Drawing up meds, hooking up drain bags and making sure the boys have everything they need for the night. Thank you honey for being an amazing dad and husband.

We will be selling t-shirts again in a couple weeks. I will post the link as soon as we set it up. Thank you to everyone who have purchased t-shirts in the past.

Thank you to everyone for all your love , support and prayers that get us through every day.