Little Mark's Pre-School Graduation

So we end another chapter in our lives.Our baby has graduated from Pre-School. It is so sad cause his little school closed this year.We were really hoping to send Broc as Mark had such a blast and learned a huge amount in a very short time.
Ice - cream was served for the first hour and all the kids played on the park.

His graduation was very casual at a local park in La Porte.Sissy and Travis and Bentley came as well as Grandma and Papa.

 All ready for Kindergarten!!!

 Little Mark with all 3 of his teachers.He loved each and every one of them.

Each of the kids had a hat and were lined up in their classes.One by one they went up to shake their teachers hands and then they got their diploma.It was really cute.Little Mark was so excited to get his diploma he forgot to shake their hand so he had to go back a second time.

 Thanks Mom and Dad and Sissy and Travis and Bentley for coming to share this special occasion with Little Mark.

We all went out to celebrate afterwards.Bentley loved the celery.

We all had a wonderful evening.Full of fun.

Our trip to Michigan - MOTTS and CVC

We spent the last 2 days in Ann Arbor Michigan with some wonderful people.We want to thank the Relly's for the great hospitality they showed us.They are truly a blessing and a wonderful caring family.We are blessed to have made such wonderful friends.Thank you too for Br Price for being with us at the hospital yesterday.He even sat at the table with Broc in the pre-op area and colored pictures.


MOTTS and CVC is a wonderful place.We cannot say enough about their Dr's and Nurses.They all made Broc feel at ease as well as taking care of the parents too.

We arrived in the pre-op area and sat at a little table and played games with Broc until they came to call us.We had to find many things to distract him as he only wanted one thing and that was to have a drink.Poor guy.If any of you know Broc he loves his cup.

Once we were called back it was time to change into his gown and get all his vitals.He sat watching basketball on the TV until it was time to go in.

His tree frog and his taggie were being held tight for comfort.

We then moved to the waiting are of the Cardio Vascular Center (CVC).Broc was given the happy juice and then daddy got all suited up to take him into the CVC IR (Interventional Radiology).Broc thought it was really funny cause daddy looked like a Dr.

His procedure took about an hour and then he was moved to recovery area.He was in recovery for about another 1.5 hours.They called us back and said that he was good to go.The were able to go in his vein and not an artery so he did not have to lay still for 4-6 hours afterwards,which made it a lot easier on everybody.We were very happy that we did not have to spend the night.

On the way home we stopped to eat at Brocs favorite restuarant as he was starving hungry.Here is a pic of him eating a bun.

He was feeling much better after he had eaten a few buns and had a drink.

The results of the procedure : There is definitely a blockage.A little bigger than we thought.It involves his external illiac artery and his femoral artery.So he has a blockage above and below his groin.It does not however involve the common illiac artery which is a good thing according to the drs,other wise they would have to tap into his aorta in his abdomen.
The plan is to come back to CVC in Nov for a CT Sonogram for a bone length study.If his right leg is shorter than it is now then they will go ahead with the by pass surgery as soon as they can get him onto the schedule.They say that his blood flow is possibly effecting the growth of his leg and the muscles but to be sure they will do the CT in Nov and if its even shorter by that time then they know for sure that its the blood flow that is causing the leg to not grow properly.

Thank you for all the prayers and words of comfort through out this whole process.

16p11.2 Duplication syndrome and NOT deletion.!!! -Update.

We were given the wrong diagnosis for Broc.Dr Z made a mistake.He actually has 16p11.2 duplication syndrome.We also found out that they have not heard of any kids with this duplication that have heart defects.Broc truly is a mystery.

16p11.2 microdeletion syndrome

Dr Z called today to say that this is what came back from the micro-array test she sent away.She was totally shocked as were we,cause we never expected everything to come back normal and we were only doing the test as a formality.

If you read about the syndrome (btw there is not much info out there)you will see that it is linked to speech delays,developmental delays and autism.As many of you know Broc is one of the smartest kids on the block.Also there is only one other case that was mentioned in the literature about a child having Aortic Valve involvement.
The lab is wanting both Mark and I to get tested to see if his is de novo (spontaneous) or if one of us passed it onto him.We are trying to find out if there are other families like us who have no delays but have CHD's.

From what we have read it explains his reflux,aspiration,asthma,Shones Syndrome(which is a name for all the congenital heart defects he has).

It seems like Broc is writing his own book.As soon as we get more info on this I will post it.

A great weekend.

We had a wonderful weekend with Britt and Bentley,our grandson.Travis was working on the house.Here are some pics.The boys love their nephew.Bentley got so spoiled grandma held him most of the weekend.Love you guys.

Not so good news!!

Well we don't have much to post from today's appts. The lung function tests were okay.We were told that because his heart was so bad at birth and no one knew it his lungs did not develop to their full capacity.So he will always have a little less capacity than other his age.His Dr said that as long as he can keep up with them,then he will be okay.They also said that his windpipe is not round all the way down it is a little flattened at one part where a blood vessel goes over it and restricts it a little.Normally the blood vessel goes behind the wind pipe.There is nothing they can do about this,it is just the way he was made.

The not so good news is that his right leg has not grown at all since his last ortho check-up in Jan.The Drs are putting it down to his leg not getting the blood and oxygen it needs to grow.His left leg is bigger and longer than the right.Even his left foot is bigger than the right one.That is the most likely reason.There is another possibility that his left leg is just growing bigger than the right.He is having an u/s on Wednesday to see if he has any tumors in his belly as this can go along with a condition called Hemihypertrophy.We are certainly hoping not.!!

When we have more info on his leg we will let you know.

Some great news!!!

We have great news to share about Little Mark.He had his annual leg x-rays and his legs have corrected themselves.We are so happy that we got early intervention for him.He does not need to see Dr H anymore. I am so happy one less appointment I have to make and go to.He does however still have to wear his SMO's (ankle braces) for stability and balance.He gets his new pair next Wed.We will take a pic of them and put them on here for all to see.They will have monster trucks designs on them.He is so excited.

On the other hand.Broc had his usual 6 month bone age x-rays for them to plot on the graph.He will keep having these x-rays every 6 months so that they can see where his leg length will be and if he needs any intervention.
He is seeing the ped. ortho dr on Friday and we will see if he has anything different to add.

Here is a picture of the boys playing at the Drs office.

We have a date.

MOTTS called today to schedule Broc for his next procedure.He will be seeing Dr S on the 19th May for a clinical examine and then on the 20th May Broc will be having his diagnostic arteriogram.Here is a link to what the procedure entails.
http://childrensnyp.org/mschony/health/radiology_arterio.html

He will be asleep for the whole thing.That is all he is concerned with.He will also be spending the night for observation.So we will be spending 3 days in Michigan.Hopefully we will be heading home on Sat once he is discharged. On Sat we will know if he will be having the by pass surgery in the late Summer or in a few years time.

It will be a new experience for all of us as we have never been to this hospital before.It is in Ann Arbor,Michigan.It is a children's hospital called MOTTS.They are a bloodless hospital which would make things a little easier for us.

Tomorrow Broc sees Dr H (the ortho dr) and then on Friday he sees Dr K(lung dr) as well as Dr K(ped.ortho dr).This week will be a very busy week for us.After Friday we will know what the next step is with Brocs leg bones too.

Both the boys health is still doing really well.Now we just need to keep it that way for Broc.
I will post with more updates later this week.