Happenings and Trees

We are still waiting on some answers from many of Brocs Drs.Broc had a sweat test done on Friday to rule out Cystic Fibrosis.We are not thinking that he has this at all but its just to rule it out.

There has been some confusion as to what GI procedures he actually needs so we are waiting for the GI at Riley and Dr Z to decided what he needs to have. He is still having pain when he eats and is only eating a little,but I guess there is no immediate urgency as he has not lost any weight.

He is also having a lot more leg pain which means that his legs blood flow is getting worse so we are going to limit his activities at home and at school. For the first time today he told me please mommy dont let Mr M make me run in gym class.So I sent a note to school and they are going to keep an eye on him. I must say his school is really wonderful when it comes to Brocs health and all his other issues.I really wish we could have these teachers with us next year.
I have stocked up on Motrin as that is all that seems to help with his pain and of course rest and us rubbing it for him.We have exactly 6 1/2 weeks until his ilio-femoral bypass surgery.

Our Buddy has another virus which is coming to an end hopefully.He woke up yesterday with no fever.We were also able to avoid being admitted to the hospital which was great.We only had to go there for an x-ray and blood tests.

Pizza:
Mark has been eating the crust off of our pizzas when we have pizza for dinner so he decided the other day to try the whole slice of pizza.Oh my when he tasted the texture of the sauce he made such a face.He has decided that he only likes pizza with crust and cheese NO sauce. Here are some pics of him eating his first slice of pizza.

I was really hoping that he was going to have another food in his diet.Not for him he will stick with carrot sticks and fish sticks and cheese sticks.


Planting Trees:
Uncle Scott surprised us on Sat. night with some trees.We were so excited the boys were so eager to get their wheel barrow and shovels out.

They loved digging,shovelling the sand out,playing with the water and then shovelling the dirt back around the trees.

Here are some pics of them and daddy planting the trees.It was really cold and windy so we all had to bundle up to go outside.

Some of our friends big and small are having heart surgery this week.We pray that they have a smooth surgery and a great recovery.

G.I. Appointment

Wow... I really feel like we are getting somwhere with Broc.You know how the turtle was really slow but still won the race well I kind of feel like that turtle.It has taken us a really long time to get where we are with all Broc's dx's,but I feel like we are really making headway.Not in everything as somethings are still very frustrating and will only be figured out over time.

We saw Dr Z today.He was so kind and gentle with Broc.Really amazing.Telling him exactly what he was going to do next and asking his permission before he did anything.Broc was very co-operative which helped a lot too.

We told him the reasons we had come to see him and then he asked about Brocs history.It is so funny to see Drs hear the history ,then look at Broc ,then look back at me ,then back at Broc. They all expect this scrawny little pale shrimp instead there in front of them stands a blue eyed ,beaming boy who weighs as much as an ox.

Who knew a quick adjustment in his meds could help the poor guy.Little did I realize that because our Buddy has grown so much over the past year , he outgrew his medication dosage too.We were given a name for the new symptoms that he is presenting with called Gastroparesis. We didn't realise that he has had this all along and that is why he was put on the medication in the first place.We thought it was to help his reflux.He does have reflux too incase that was confusing to anyone.In a way it is to help with reflux but in anycase it has a name.Gastroparesis means the stomach contracts less often and less powerfully, causing food and liquids to stay in the stomach for a long time.

We are hoping with some changes in his dosage and getting the meds more often he will have less pain when he eats.We are also going to be adjusting his diet with less high fat, high fiber foods.No caffiene or chocolate.Buddy was not very happy with that one.He LOVES his chocolate.Then the Dr said something else that made him upset.He cannot have anything with mint in it.Buddy's favorite ice cream is choc-mint and his fav. choc is mint choc like his mommy. Thankgoodness Daddy has him liking peanutbutter cups so he does have a second fav.

The less high fiber foods poses a problem as Buddy needs them to keep him regular so we will have to make smoothies with fiber or bran in them to help him along.

Dr Z also wants to do an endoscopy on Broc as he had one done in 2010 and feels that with his meds not been adjusted for so long he wants to check for any damage that was done to his esophagus.They will be taking many biopsies to make sure that the tissue is well too. He did tell us that if his esophagus is badly damaged then we will have to take more serious measures as this can lead to early signs of esophageal cancer.

So for now we are increasing his G.I. meds and will wait for the endoscopy.

As always I will update with any news that we have.

Mark and I really appreciate the love and support you have give our family as we deal with all Brocs health issues.

Neurology Appointment

Broc and I saw Dr Smith today.She is really lovely and friendly.She has a very good manner which means a lot to me.I really dont care for a Dr that thinks they have been to x amount of med school so they know everything.I like one that treats me like a human being and a mom.

Anyway, the residents reviewed his whole history and then did a physical on him too.They said his physical was great but that he needs to be active in sports and things that involve co-ordination.Well that didn't go over to well as he is not allowed to be in sports and things like that because of his heart so we have to practice riding his bicycle which he loves and hates because he cannot get his pedal to come back around and it frustrates him so much.We were going to work on that this Summer but it will have to wait as he will have to recover from his vascular surgery first.

They did have a CT Scan that was done when he was 7 months old and they were able to compare it to the MRI he had done last month and they said that the findings were the same.Apparently he had the bigger ventricles in his brain which means in proportion he had the same amount of white matter loss then as he does now.Which is comforting to know that it has not gotten any worse. They think that before he was 7 months old his brain had some oxygen and or blood loss and that is what caused this to happen. I did have some issues when I was pregnant with him and we almost lost him during his first cardiac cath, so we are not sure when it happend but it did.

Because of this lack of white matter growth it has caused his developemental delays especially with gross motor skills.He can do all these skills but it will just take time for him to master these as it did me.I had some extra OT and PT when I was younger and we are going to try and get him into the school system for that.We have tried for the last 2 years but our insurance has denied the coverage for it.We are also going to try and get it covered again seen as this time it comes from a Neurologist and not an OT specialist.We are going to keep fighting for him until he has all the help he needs.

They are also thinking possibly on the lines of Mitochondrial / Metabolic Disorder so they are going to order some specific labs when he has his next fever episode.They are thinking that his ballance issues when he is ill could be caused by a metabolic issue happening to him.

If only it would be that easy as taking a few enzymes that his body is missing or not making.

We will be seeing a Ped. GI hopefully soon as Broc is having pain and fullness after eating only 2-3 bites of food.It happens with liquids too sometimes.We thought it was heart related but its not. He used to be such a big eater and love his food but that is not the case anymore.

Thank you again for alll your prayers and kind words that you leave in your comments.