So much is happening........

Good news to share Brocs EEG was negative.He is not having ongoing seizure activity and what ever he was having was a side effect from the ADHD med he was on.So ........ unfortunately there is no ADHD med that Broc can take.We have been through them all. The side effects that he gets from them all are too much stress on his body. The bad news is now we have a boy that is talking non stop,unable to control himself,extremely impulsive, has a really hard time processing anything. When you talk to him or ask him to do something it looks like he is just staring through you. He does hear you but cannot process what you are saying unless he is totally focused on you and has no other distractions around him.
He is getting lots of warnings at school so his teacher and I have been having lots of discussions as to how we can best help Broc. His handwriting has also regressed significantly since last Fall (October) so much so that he is doing most of his testing orally and the teacher will write in the answers or I will. He is not able to keep up with the class anymore either. Broc will be seeing Dr Boaz the neurosurgeon in May for a visit and then we will schedule an MRI for him to see if there have been any changes in his brain from his last MRI he had. At time we are not sure what is going to happen with Broc as regards going to Second Grade. His teacher said that is she had to grade him what he was able to do by himself he wouldn't pass anything.

We are hoping to learn a lot during the Summer break. Broc and I will be going back to Seattle for his visit for the research study for his 16p chromosome disorder. We will also be going to Cincinatti Children's Hospital to the Aero Digestive Clinic.There he will be seeing a bunch of specialist and have some very important testing done. Hopefully we will be getting a lot of answers. He will also be having the MRI on his brain. So after the Summer we are hoping to have a much better picture about Brocs physical and mental health.

Mark is also unfortunately not on any ADHD meds to help him control himself. He too has reacted to them and the side effects are not worth the stress on his body either. We do however have both boys on natural medications to help with their anxiety and behavior.

Mark saw Dr Boaz yesterday for a visit. What a wonderful and caring Dr. So interested in listening to the parents and what there concerns are. He said that there are meds he can give Mark for his headaches but he is already on the 1 medication that they know for sure works to prevent migraines. Mark takes that medication as an appetite stimulant. We know this is working as he now weighs ...... wait for it ...... 57lbs!!!!!!!!! I had to ask the nurse to weigh him twice cause I never believed her. I was ecstatic!!!! We have waited so long for Mark to put on weight. He is now thrilled that he weighs more than Broc does.
So Mark is scheduled for a sedated MRI in August to see if his brain tonsils have moved any and to see how the cerebral fluid is flowing. If things are not looking good then we may be talking surgery for him. The thought of brain surgery sounds very scary to any parent. He did say that if we don't fix the pressure issue then it will only get worse. Symptom wise Mark is dealing with pain and pins and needles in his legs, his legs going numb after sitting for a long time, insomnia,snoring even after his adenoids have been removed,and of course the migraines that he gets which keeps him from doing normal everyday things.

Mark will also be going to Cincinatti Children's in July to visit the motility clinic. He is having a lot of issues despite changing his diet and using different kinds of meds to help him. These issues are also keeping him from everyday things when they are at there worst. When your health interferes with you missing weeks of school at a time then we have to find a solution to help him.

So everyone please bare with us if our boys seem very WILD as some have said.Very IMPULSIVE or even NON-STOP HYPERACTIVE at times. It is not there fault nor ours. It is very difficult for Mark and I but we are trying our best. It is very easy to go no where and stay home with them, but we are not going to do that. We will continue to do our best and teach them about Jehovah and his creation. We will continue to take them out in the ministry so that they can tell others about the wonderful hope we all have.

We thank you for all your loving support and continued prayers for our family.  
  

The Memorial and a crazy week.

Every year we celebrate the Memorial of Christs Death. What a really special occasion when we reflect on what he has done for us. We also take family pics every year on that night as everyone is dressed up so nicely. Since the boys have been little I have always dressed them in tuxedo's for that special night. Not to sure how long that tradition will last but I love that they look forward to it for now.

Here are some pics of that special night.

Onto our crazy week part.
Broc woke up screaming Saturday night that his eyes were hurting him. We thought it was an allergy thing cause we had been working in the yard at the Kingdom Hall. I put in some eye drops but nothing seemed to work. I was up for a couple hours with him then eventually he cried himself to sleep. Woke up in the morning like nothing had happened.Except for a very tired mommy.
Sunday night he did the same thing but was also complaining of his head too so I have him some motrin this time. Both Mark and I were up with him for a couple hours and then he fell alseep crying again.
Monday at the Memorial he fell asleep on my lap as we had the later one. He started jerking in his sleep and choked twice while he was sleeping. It brought back memories of when he reacted to the medication back in July 2012 when he had the myclonic jerking. This went on for a few minutes then stopped and happened again. It was snowing out so Mark went to get the car for us and took Broc with him.
By the time he had pulled the car up to the door and I was climbing in Broc was screaming again. His eyes and head were hurting him so bad.He cried all the way home and we felt totally helpless just wanting to get home as soon as possible.
We gave him motrin and tylenol this time. I layed with him in his be until he fell asleep.Mark and I decided that we needed to call the Dr in the morning.He woke up Tuesday morning so nauseous and headache. We saw Dr Moustafa and he said this could be serious from brain bleeds and tumors to a crazy virus that has attacked his head and eyes.
Wednesday we saw the Opthalmologist to rule out any eye pressure or issues with his eyes. We were given great news that Broc has no pressure and no issues with his eyes. He even has 20/20 vision in both eyes. Broc was not impressed when they had to dilate his eyes.It took 3 of us to hold him down but we got it done.

 
When we found out Brocs eyes were good we scheduled his EEG. We managed to get him in this Friday. Dr Moustafa wanted to rule out seizures.

Broc did really well during his EEG. He fought going to sleep but once he did he was out!! Nothing like a yummy slice of pizza to make everything ok , and we stopped at the store after we picked Mark up from school to choose a dinosaur. Cause you can never have too many dinos in there world.

We will get the results on Tuesday hopefully. We are hoping that this is just a crazy virus that is causing all of this and nothing else. Today Broc is still dealing with a headache and some nausea.

Last Assembly weekend with lots of pics.

The reason its was our last Assembly weekend is because we are no longer having 2 day assemblies.They are only going to 1 day assemblies. That just means we will have to try and see all our friends from a bunch of congs in 1 day.Wow that will be fun.

We try and take a family pic at every circuit assembly but this time we didn't have a great backdrop. Of well at least we have the pic. All the information that was shared with us was so encouraging. I especially loved the talk on comforting each other during these last days and then paying it forward. Its true how good you feel after you have helped or comforted someone else.

Here are all the pics we took that weekend.

The boys love walking over the bridge and watching the fish below. Pretty big koi.

Our assignment after lunch was to help clean off the tables in the dinning area and to clean the floors. The boys love helping us especially spraying the cleaning solution on the tables. I remember when I was little my dad always have the restrooms to clean.I used to love helping him clean.

We have had a very laid back Spring Break. I took the boys to the zoo this week and they went swimming.They are doing so well with their swimming and their kicking is really coming along nicely. On Sat we are going to the movies with a few friends. Looking forward to lots of fun. We will also have cleaning the Kingdom Hall for the Memorial on Monday evening. I will be sure to post pics from that too.

March in a nutshell

Things are really crazy nowadays that I am only finding time to blog once a month it seems like. Sorry for that.I will try and update at least twice a month or more in the future but I cannot promise anything.
I am so happy as I made my time again for March.The weather was much nicer and we had less sickness.Little Mark had some issues but that was toward the end of the month and fortunately I had already gotten my time in.
The boys have been taking swimming lessons for a few weeks now.It is mainly physical therapy for them to help strengthen their joints and muscles and to get them more used to the water. Many people don't know but our boys hate the water.Taking a bath is an absolute nightmare for them especially if you have to wash their hair.

Here is a video of Broc learning to tread water and being brave and Little Mark is making baskets while treading water.

 
They are doing really well and Broc has even decided to wear a floating belt while Mark is still not quite sure about that one.

It seems as though EDS is really hitting the boys hard this year. I was about this age or maybe even younger when I started with the leg and hip pains. I can remember my daddy used to rub my legs for me every night before I went to bed or I used to lie with my legs against a wall to help with the pain. Not sure why I used to do that but it did help some. Thank you daddy.

Little Mark is getting the paining legs and arms.This morning he woke up with his hips being so sore it took him a while to get out of bed before he could walk. He experienced his first bowel shutdown this month. He had a stomach virus for a while and then all of a sudden things went bad and we ended up in the ER with a fever and severe pain. They ruled out an obstruction and discovered an ilues which is a psuedo obstruction caused by air or something else.
Here he is in the ER.

Monday Dr Moustafa called and said that he wanted Dr Zadie to see Marks results. We got a call from Dr Zadie and he had admitted Mark to Memorial Childrens for the day Monday to draw some labs and rule out the ileus that was previously seen and to make sure he was doing better. Once this was over with Mark then got another stomach virus.Poor guy was down for almost 3 weeks and missed a whole week of school. The school was very understanding and he was able to complete his homework in his own time. 

 
Both Mark and I caught the virus too.Mark was only ill for 24 hours but it stayed a week with me too. Having a compromised GI system is really no fun.

Mark got his appointment with the neurosurgeon and that will be on the 25 April. While we are there Dr M has asked me to mention Broc to him too as he is concerned about the regression he is having and would like him to see Broc too.

I also saw the neurosurgeon and Chiari Malformation was ruled out. I am so happy about that. There were some other minor findings that we are able to look into and start taking care of them before they get too serious.

Next week is Spring Break and we are all looking forward to that. We are hoping to do some fun things with the boys.

April is gonna be a busy month too with Aux Pioneering,The Memorial,Spring Break and the Circuit Assembly and Little Mark has his first Concert at school. We are really looking forward to April which is already here!!!