Quite a scare!!

On Wednesday I picked the boys up from school as usual. Instead of Broc running out to meet me he was very slow and quite. He told me he was freezing cold and very tired. I was a little taken a back cause normally he is so crazy I have to stop him from bounding across the road. We went to pick up Mark and got in the car.

I asked how the boys day was and Mark told me all his news. Normally Broc cannot stop talking and Mark cannot get a word in edge wise. All Broc said was that he was so tired in computer lab that he only wrote 2 lines and then had to put his head down.

We got out the car at home and I felt the back of his neck as he was getting out the car.OH MY GOODNESS!!! the poor boy was burning up. I rushed inside the house and had him lay on the couch while I put all the bags inside and reach for the thermometer.

 He covered up with a blanket and was out. I took his temp.104F!!! Oh man panic mode set in. The last time he had a fever this high we were in the hospital for a week and then transferred by ambulance. I called the Drs office and they said bring him in immediately. I grabbed all I could and we ran out the door.By this time Broc could not walk and was barely responsive.

Anyone who saw him was very concerned. We are all so used to him bouncing off the walls and trying to control him. Dr Moustafa came in and took one look at him.He gave me the plan of action. First flu and strep both were negative. By this time Mark had met us there. Then off to the hospital for lab work and blood culture.

His labs came back very concerning so we all thought infection. Broc had dental work done last Friday. If he gets any bacteria in his blood stream it can go straight to his heart. We were all thinking endocharditus. He suggested we come back to his office to give him very strong antibiotic shots. They are very painful but much better than being admitted and being on IV meds. Dr Moustafa knows that we can handle Broc at home just as well. He was drinking so that was the main thing.

Wednesday night was rough but he did well. His fever Broc and then shot back up again. He woke up Thursday morning with little pin prick spots all over his face. I know what that is, petechiae. It can be very serious so panic mode again for everyone. Dr M sent us to the hospital to check Brocs platelets. They had dropped but not low enough to cause the petechiae all over his face. PHEW!!!!! Dr Moustafa thinks the reason is from his fast,extreme high fever. That is his bodies way of dealing with the stress from the fever and infection.

We saw Dr M again Thursday evening and he was very happy to see that Broc is improving. He still doesn't have all his energy back but his fever is much lower and staying low. Yesterday he became very nauseous and had lots of tummy pain so we will be checking him for C-Diff again too just to make sure that is not causing the infection in his body.

Fortunately his blood cultures are still negative which is a good thing it means that what ever infection he has it not a serious blood infection.

We are hoping that he will be better by Monday as there is only 2 weeks left of school and we have a very busy Summer ahead of us. Unfortunately it's not all fun it will involve flying, hospitals ,dr offices, procedures and IV's.

Thank you to everyone for all your love,prayers and support.

Neurology Appointment

This was the beautiful sunrise that we drove past.

Yesterday Broc and I made the trip to Riley to see his neurologist. Broc has been having quite a few issues since last fall and they are beginning to interfere with his school work and how he is able to function on a day to day basis.

We didn't get any answers yet as there are many things that need to be ruled out first. She had Broc write a sentence for her and his name. Next she did all the Dr things vitals,running,jumping all the fun things the kids love to do.She also checked his strength in his arms and legs.She said they are all good. She has ordered a brain MRI to rule out any abnormalities and to see if his white matter has continued to decrease or stay the same as the last MRI he had.

She has also asked us to see Dr Walsh again. He is the Mitochondrial Dr. We have seen him before with Broc but he felt that everything okay. Since all the regression Dr Smith wants us to revisit the Mito aspect again. She also drew mito labs to check all his levels again as its been a while since we did that.

She asked how many services Broc is getting at school and for how long as she thinks maybe that can be increased if possible.
She also said we should look into having Brocs hearing tested. We did that about a year ago. We are thinking that right now it may not even be accurate as we wont know if he really cannot hear or if he cannot hear cause he is not focusing on what he needs to be hearing. We have had that issue in the past too.

In the end she did say that we may find nothing wrong with his brain which will be wonderful except what we have already found and that all of these new issues are due to his ADHD. If that is the case then we will all have to find a new way for him to cope and be able to carry on at school. It may be a Special Ed classroom or having any aid. We are not sure yet what it will be.

Broc will also be seeing the neurosurgeon on Friday and he will add anymore MRIs that he wants to the one Broc will be having in June.

Look who we ran into there.

Thank You!!!! & Ehlers -Danlos Syndrome Awareness

Mark and I want to say Thank You for all the loving support you guys have shown us.We have received such loving,compassionate and encouraging emails from many of our family and followers. It is so nice to know how much support we really have even if we are a million miles apart from each other.

This is what the boys do in the morning while waiting for the bus. Mark is not singing today just humming in the background.

We unfortunately had to break down and put Mark back on meds again.Things just got too scary for us all. It was becoming a matter of his safety and others too. It is really sad that we had to do this but we know its what works best for him. His school work was suffering too.

Unfortunately medication cannot fix all things for him.His motility is really giving him issues.He is in constant pain and discomfort daily. July cannot come soon enough for his appointment with the Motility Team at Cincy. He had another virus this weekend which led to another shutdown for him. His appetite is decreasing again too to the point of him only eating 1 meal a day sometimes even nothing but liquids. His headaches are not getting any better either.

Broc is dealing with another ear infection. This past weekend was really miserable for him. He is on ABX for it which is really messing with his tummy too. Both boys have been dealing with really bad reflux too.

This week the boys will have another dental appointment. This is what happened the last time.

 Mark was okay afterwards but Broc was out for a very long time afterward. He doesn't do well when he has general anesthesia and now we found out that laughing gas knocks him out too.

This month is Ehlers-Danlos Syndrome Awareness Month. This is a disease that myself and the boys have been dx with. Here are 3 fact sheets which explain it really nicely.

This is something that the boys and I deal with on a daily basis but it doesn't stop us from living our lives to the fullest and having fun a long the way. I am teaching the boys to rest when they need to but also to never give up.

Thank you for all your loving support.