Seizures??? We hope not.

Of late Broc has been having some weird eye movements.He has had them in the past but I never took any note of them.I just passed them off as being something behavioral.
When we were in Houston they saw them and asked me about them.I told them I have seen them but never took any note.
They asked us please to contact his ped and let him know who in turn asked me to contact Brocs neuro.
They are a little worried he could be having absent seizures. Seizures can be seen with the 16p11.2 Duplication that we all have.
Broc is also taking a medication (well was taking a medication ) for his Gastroparesis which he has been taking since Oct 2010. A very rare side effect of the medication can be neurological issues.
Since all of this we have stopped his medication to see if these movements are going to stop. His neurologist has scheduled him for a 3 day Video EEG to capture any seizure activity. We have spoken to his surgeon and he siad that we should not do anything before 4 weeks after his surgery.So we have scheduled the VEEG in July to coincide with his appt to see the Mito Specialist and the Immunologist.

Now stopping his motility meds have already started to cause problems for him. He is once again not able to eat a full meal and is getting pain and fullness after his meals.

Both his Neuro and GI Dr feel that his neurological issues are more important that his GI issues.So he will stay off of his motility meds until he has the VEEG so they can rule out any seizure activity.

Trip to Houston and More....

Broc and I went to Houston last week for a few days to complete the chromo study we did in Oct 2011.Our flight there was a nightmare but our stay was loads of fun.Although we only had one day to sight see and one day for clinic,we had fun.It was a really short trip.

On our free day Broc and I went to the zoo and then later that evening to the aquarium.

Here are lots of pics from our trip to the zoo.

You can never get too many hugs and kisses from Buddy.

How do I look in 4D glasses???

It was an awesome day.Such a pity Daddy and Mark were not there to share it with us.Broc and I were lost without them.

Here are some pics of the Aquarium.

Buddy was makng sure this shark was not real.

 Still shocked that we just drove through a tunnel of sharks.

 Jaws going back under the water.He came out so fast we never even had time to process him coming out of the water.

He wanted to run in the fountains so badly.

 AAHHHH.... The famous diva cows.

Buddy wanted to take these fish tanks back home with us.He loved them so much.

We are not sure yet what all they discovered at our trip this time round.We didn't have a meeting at the end but will get notes in the mail.
We did discover that he has a qualitative immune deficiency and that they have not yet discovered a test to figure out which part of the immune system so until they do we just treat the symptoms.We are still hopeful that the Mito specialist will have some info for us in July.

We have a Super Speller in our family.He has scored 100% for his spelling test every week.We are so proud of him!!!

Our in insurance has finally approved Brocs O.T. It turns out all they needed was a different diagnostic code which we now have since having an abnormal brain MRI.He has his first session on Thurdsay.


We have a lovely family picture taken of us this weekend.We really wanted to the boys to still be wearing their jackets and ties but with it being 98 degrees outside who can blame them.



Broc and I have a meeting with his new school tom.It is the school where Mark goes now.We are going to meet his teacher and to discuss any challenges that he may have next year.Also any therapies that the school may be able to offer him.We are also going to work out a health plan for

Broc too.

We had a really scary episode after lunch at the Assembly this past weekend. He was really shaky after lunch and said that he wasn't feeling well.I took him to get some water and by the time we reached the water fountain he was as white as a sheet.I took him to the First Aid room where they checked his heart rate which was high. They asked what we had been doing and told them we had come in from lunch.They determined that it was too hot outside for him and that he was over heated and his body was having a hard time cooling itself down.He was also complaining of chest pain too.

We gave him some cold water to drink and put cold clothes on his neck and forehead to help him cool down.

We do know that Broc does not handle the heat very well but that has never happend before so we are going to have to lay some ground rules down for the school as far as recess and being outside during very hot weather.

I may even have to pick him up from school on very hot days as he may not do very well on the hour bus ride home.

Tomorrow , 3 weeks we will be heading down to Michigan for his surgery.

We pray that he stays healthy till then as a lot of planning has gone into this surgery.

Next week is the end of year picnic for Broc as well as his graduation ceremony.