We are stronger than 1 man!

Mark and I took a trip down to Riley to see a Dr who we thought was going to help us. Instead it was the WORST appointment I think we have ever had with any Dr besides that same person a couple years ago. It makes us so mad and hurt to think about how we were treated that hes not worth talking about.

A new day is here and we are very thankful for that. We have a few specialist here locally on Brocs team and they truly care about Broc and giving him the best quality of life they can. We need people that truly care and have Brocs best interests at heart.

We saw GI yesterday and he has been in contact with Brocs EDS Specialist. Together they have been brainstorming and coming up with some possibilities of what we could be looking at. We are still in the testing stages. We have been told that they are looking at the more rarer diseases. We have also been told that it could be a mitochondrial issue and this could be the start of progression for Broc too. GI ordered a slew of blood work yesterday to rule out some things and figure out what Brocs body is not absorbing. If necessary we will start adding some supplements. It seems like he may not be absorbing them in his gut so they will have to be IV medications.

Brocs counts are still very low therefore he is still susciptable to catching anything that is floating in the air. We are extremely fortunate that he hasn't caught anything yet as his immune system is extremely low.

We have to be patient with the testing. He will be having a small GI study done next Friday. They will also be ordering a series of biopsies of his GI which will be done in the OR too. That will be done at Riley. They need to see what his small bowel and intestines look like now and see how they function. They will be checking the mucosa in his small bowel ,stomach and intestines which will give them some clues too.  

Broc will be having a cardiology checkup next Monday too. That will give us a good idea as to when his next Heart Surgery will be. We know that his heart is weakening and are sure that its taking strain with all these illness and low counts that he is dealing with. We are hoping it will still be a couple years but will know more once we have his app.

This past couple months has been really stressful on all of us. Trying to get used to a new normal with all Brocs medical equipment ,hospital stays and surgeries. We appreciate all your prayers and need them now more than ever. Lil Mark is dealing with a lot trying to understand why his brother doesn't have the energy to play with him like he used to, why he has to have different people taking care of him in the morning and afternoon when mommy and daddy are gone taking care of his Buddy. Why we all cannot sleep under the same roof every night. Wondering how his brother is feeling and going to feel from one week to the next. Mark and I try not to talk in front of the boys about Brocs medical issues or what we as parents are feeling or facing. I'm sure they can feel the tension in the house. Lil Mark broke down on Wednesday evening. I think everything finally got to him. He has a really hard time expressing his feelings we think it got too much for him. He even woke up in the middle of the might sobbing all I could do was hold him till he went back to sleep.

As a mom you heart just breaks into a million pieces. Mark and I know how stressful this all is but for an 8 year old to comprehend all of this is just plain crazy!!

This blog is a wonderful outlet for me to express my feelings and really helps me. We really appreciate all the friends and family that are reaching out to help us. It means so much to us. The next couple weeks will be filled with apps and procedures and all your help is appreciated. I have tried to let people know in advance if we need help but sometimes that is not always the case.  

Here is a picture of Broc playing with his nurse Jeremy. No matter how busy his day is,he always makes time to have a little fun with Broc.

I know many of you have not seen this precious face in a while so here he is.