Lots of NEWS!!!!!

In the last few posts we have been saying that there will be a post with news.So here it is.
Once we came back from Houston it was recommended that we have both the boys evaluated for ADHD and Disruptive Behaviour Disorder.Well we did and they were both dx with that.

Mark is on some natural things to help him focus more and stay a little calmer when things don't go his way.We are not giving Broc anything as we do not want to compromise his health issues anymore.Mark is also receiving some Sensory Therapy at school which is helping too.His teacher seems to be a little more understanding than she was in the beginning.

Our BIG news is that our Buddy Broc went to school for the first time today.He was evaluated by the Special Ed Pre-school and he was accepted.We are very happy about this as he is very smart and we know that but he does lack in some areas such as social skills and being able to do some things for himself.They are also going to give him sensory therapy as well as behavioral  therapy.We are very fortunate as all his issues will be dealt with at school.Broc was also dx with Developmental Co-Ordination disorder, we think it goes along with the chromosome disorder that we all have.
Here are some pics of today and a 2 videos.Please let me know if you cannot view the videos and then I can send them to you.

It was very early.I literally dressed him in bed.Poor guy the bus comes at 6:50am.He ate his poptart on the way to school.He was very excited when he saw the bus.
http://www.youtube.com/watch?v=veGoKujTrto
http://www.youtube.com/watch?v=7FzXCALlFZE


Those are the 2 videos of him catching the bus.

When he came home he said that he had so much fun.He played with lots of trucks and balls - his favorite things.
A great report came home for the day so we are very happy.The only downfall is that there are lots of germs at school so we will have to see how that goes.

As far as Brocs health goes we are waiting for a number of answers from Dr H.We are hoping to start treatment for Broc soon too.We just have to fight with the insurance company as to why he needs it.
We also have his CT Scan to look forward to in Dec.We are hoping very much that there has not been much growth and that we can have another CT Scan at the end of March and if the growth is still not very big then we are hoping to stretch surgery till the Summer- end of May.We would really like Broc to receive a full 5 1/2 months of pre-school.If he has his surgery at the beginning of April then he would miss the last 2 months of school and miss out on all that support and help and therapy.

Winter Break is coming up soon so we are hoping to see a few great places....
If anyone has any questions at all please feel free to ask us.

Special Assembly Day Pics

We took lots of pictures that day as they had new outfits and I loved their hats.They looked like little Mafia Men. Unfortunately Broc had to wear his mask as he was ill and it was to protect him from getting anything else.We did re-takes the next day at home as many people wanted to see Broc's face.
Enjoy the pics.

 Daddy does not like taking pictures.

 Mark makes really funny faces when he smiles so in the next pic we asked him not to smile.

Warm Winter coats as it was really cold outside.

The boys had so much fun taking these pics.

 I love this one.!!!!!

Hope you enjoyed looking at their pics.

This time last year.....

This time last year Broc was laying in the ICU recovering from his Open Heart Surgery.I cannot believe what a fragile state he was in then and looking at him today he is doing great heart wise.

This was him last year .......

And this is our Buddy a year later.....

This is Broc's favorite thing to do when we go to Sears.He love's to try out all the new models that they have.


A lot of things have happened this month but I am waiting for a few more answers and then I will post all the information for you all.Till then have a great day.

Our first snow of Winter

Yesterday we had our first snow.The boys loved watching it fall.At first it came down as snow pellets and then it started falling.It stuck for a little while and then all melted.
Here are some pics.They are a little grainy as they are cell phone pics and taken at night.

On another note our Buddy has strep again.That would explain his fever this week.He is so smart that he doesn't tell me when his throat is sore as he knows that he will have to get it swabbed.It took 3 of us to hold him down yesterday.It's worse than having blood taken as far as he is concerned.

He is so happy today is his last blood draw for the cyclic neutropenia testing.YIPEEEE !!!!!
We are quite certain that he doesn't have it.In a way we are happy that he doesn't but it still doesn't explain why he gets ill all the time.But we can check it off the list.

His CT Scan for his sinuses has been scheduled for next week and are eagerly waiting to see what that has to say.It will be great if they are the problem and if they are causing all his infections.We can easily treat his sinuses with strong antibiotics.If his sinuses are clear then we are back to square one again.

Not sure if you can see but if you look really closely Daddy's hard work has payed off and his grass is starting to grow on the hill.I am so happy as he has worked really hard on that while he was off work.

Looking forward to a housebound weekend so our Buddy can get better.Lots of movies and cuddles here we come.

Hand ,Foot and Mouth Disease

Poor Buddy ontop of the upper resp/sinus infection that he has he now has Hand,Foot and Mouth Disease.Thank goodness he only has the mouth part with the fever and general not feeling well.He also has some lymph nodes that are swollen but that is due to the infection that he has.

He is still doing the testing and so far his lowest ANC number has been 1500.Dr H said that as long as he stays above that number he will not have cyclic nuetropenia.He wants us to test for another week to see if there is any change.

He said that Broc does not have any immune deficiency but that his body has an abnormal reaction to every virus that he gets.So by the time he is done with this one which will be about 5-7 days he said that he will have caught another one from somewhere.

He said that we are doing all we can to protect him.Just to keep him happy and comfortable when he does get ill.It seems like putting him on antibiotics at the first sign of a sinus/upper resp seems to make it much more bearable.By now he would have developed croup and still be really bad but we have not gotten there yet and are hoping that the antibiotics are keeping the infection part at bay.

Little Mark has been dx with Asthma as well.His seems like it is exercise induced.We are hoping to get it under control before the extreme cold weather approaches.

Daddy is working hard on the yard and planting the rest of the grass seed.Our backyard looks like an agriculture property.

Follow up appt. with Dr H.

Since we saw Dr H last Broc has been on  a dose of antibiotics for the sinus infection he had. He is also running these low grade fevers which spike over 100.8F around 4-4:30pm everyday.During the rest of the day he is really crabby.He just says he doesn't feel good.Last Friday we started him on baby asprin twice a day and would you believe it no fevers.He did say that if he were to get a really bad virus with a high fever then the asprin would not help him.So we will be able to tell if he is getting really ill. He said that the low grade fevers mean that he has inflammation in his body somewhere.We have been told that so many times.Dr H likes to call Broc an interesting yet complicated little boy.

We thought that all the blood work came back normal but I guess he had some more to add when he saw him today.He said that the pneumo and strep antibody numbers were not normal. His numbers have to be above 1 and all those numbers are 0.something.Broc will be having another pneumo vax shot next week and then will have his blood drawn in a month to see if he made any antibodies to that shot.His WBC is also on the low end as well as neutrophil count.As a result we started the testing for cyclic neutropenia today.That will last a month.

Broc has another sinus infection so he started antibiotics again today.We will see Dr H at the beginning of Dec and he will order a CT of his sinuses to see what they look like.

We are able to give him the flu shot once he has had the pneumo antibody blood test.
As we near the beginning of cold and flu season we still have to be careful in public places.

Thank you all for your support and prayers for our family.

Our Trip to Texas Childrens Hospital in Houston.

Flying on the plan was very interesting with Mark.He was very aware of all his surroundings and sitting still for that amount of time was not very relaxing for him.We apologized before hand about his behaviour.He was lifting the shade up and down and drumming on his tray table.I think some people probably wished they had a parachute to escape with.

Finally I pulled out some of his homework and that kept him busy for a while until the decent and then of course his ears started hurting.Oh My..... I felt so sorry for the poor guy.I pulled out some Motrin and that seemed to work after a while.

The car service was waiting downstairs for us and drove us to the hotel.We caught a train and walked a little to the Aquarium Restuarant. What an experience. There was a huge fish tank in the middle of the restuarant.
I think it was 150 000 gallons.Don't quote me on that.Dinner was amazing.The food was incredible.It was quite a feet to keep the boys in their seats to eat dinner.They were constantly looking at the fish.

Dr Harris had orders for Broc to be protected in public places.He had to wear his mask mainly in the airport and hospital.It did help that he saw other children with masks on too.

Mix and Cara this is for you two. The boys really loved this one.

Surprisingly Houston is really safe.We walked back to the train station and then caught the train back to the hotel.Poor Broc was not very happy that we didn't bring his stroller so we carried him part of the way.

Day 1.

We had to be up bright and early the next morning.The first day many of us were in different interviews all day.We did break for lunch.The boys were so happy that there was a Subway so they could eat a cheese sandwhich for lunch everyday.

I also had my MRI late in the afternoon.The tech asked me please to stay awake but that never happened.So he kindly left me to sleep and then woke me up and said okay you have to stay awake for the next 15 minutes.
Once that was done we hopped back on the shuttle to the hotel. We had dinner at Olive Garden that night.We tried to eat at places that was close to the hotel and we could catch the shuttle bus.The boys loved that.

 The fountain inside the lunch room.The boys could stare at this for ages.

 This is the fish tank that the boys watched and also how they spent there time waiting for mommy.Daddy read lots of books and chased boys around all day.I was in most of the interviews either about myself or one of the boys.
 
Day 2.

We were up bright and early again to catch the shuttle bus to the hospital.We had more interviews.Mommy had a 3 hour interview that included a huge cup of white moca. Little Mark also had his MRI that day.He was a champ.Daddy said that he saw his feet falling lower and lower until he was asleep.We also had our skin biopsy done.The boys were so great.They just sat there and let the Dr do his work.They put on a numbing cream for 1/2 hour before hand so we never felt anything.I was really expecting the worse.
That day we went to Kroger and bought dinner.Mommy had sushi and the men had fried chicken.It was great to sit and home(hotel room) and watch a movie.We had a lovely hotel room with a kitchen,family room and 2 bedrooms and bathrooms.

Day 3.

Up bright and early again.By this time we had made many friends on the shuttle bus including the bus drivers.It was really nice cause each person had some sort of medical "issue" going on or new someone that had one so we could all relate to each other.

Everyone was really surprised at how much Broc has been through and what he still has to deal with. Mommy was in another 4 hour long interview while the boys were having their 4D pictures taken.They had fun taking pictures.Mark and I had the much anticipated feedback with all the counselors.We learned a lot about the boys and many things we knew already.

Dx for the boys:

Both boys have possible ADHD and Disruptive Behavior Disorder. We are seeing the ped for a full evaluation for that.The counselor said that even if they don't have it then they are at least have tendencies so we need to tweak a few things to make life easier for them and us.We will also pass these helpful hints onto their babysitters and teachers.

Broc was given the dx of Developmental Co-ordination Disorder.We are not sure yet how to help him with that one.We were told that there maybe a possibility that he had a stroke during one of his heart surgeries and that could have caused the delay.Needless to say that day was very tiring.

 Our Simons VIP Team who took great care of us.

 Mark practising his numbers and letters.

 The "cows". They were all over the hospital.

 

 The Texas Childrens Hospital - where we spent our 3 days of testing and interviews.

 Another lovely fountain that we drove passed everyday.
We decided to eat at a very nice restuarant our last evening.The name sounded very nice but when the driver dropped us off we thought he had the wrong address.We saw all the wonderful food on peoples plates when we walked in so decided to stay.Oh My the food was YUMMY and very inexpensive too.Mommy had crab and daddy had shrimp with Buddy.Mark ordered chicken tenders.

Our last day we wanted to do something fun with the boys.We heard that the Zoo was fairly close.We had the shuttle drop us there until around noon.We had a great day.We saw many African animals,a seal lion show,many frogs and snakes and some animals and birds that we have never heard of.The best part was the admission was free as we have a membership to the zoo near us and they are partners.It was very hot too so we enjoyed sno cones at the end.
The shuttle came to pick us up around noon and we headed back to the hotel to meet the car and then off to the airport.Both the boys slept all the way home.What a great trip.
Please enjoy all the pictures of the animals and birds.

We even found a "cow" at the airport.
If anyone has any questions about things that happened in Houston or about the boys dx's please feel free to ask.