Yipee - He did it!

Little Mark has been trying all Summer to get this right.At first he was afraid of going upside down.Then he was afraid of his legs leaving the ground and today was the day.He decided to give it a try.For the first few times I spotted him lifting his feet until he got it by himself.

Mommy and Daddy are so proud of you Buddy.

Broc's first bacterial infection

Broc has been sick this past few weeks with an Upper Resp. infection.We have been doing breathing treatments and saline to help him.He has been coughing really badly at night.
While we were leaving for service this morning he was chilly,actually shivering so Mark put his coat on him. He never said that he didn't feel good or anything, just kept getting ready.

I went over to him and felt him and he was warm so I took his temp and he was 101.5F. By the time Daddy and Mark left he was 102F.By the time I had taken his service clothes off and dressed him he was 103F.
Wow that went up fast.I called the ped and we went in at 10:30. I had emailed his ped last night and again this morning to let him know what was going on.He called back and said that he also suspected pneumonia and wanted a chest x-ray and labs.

The ped we saw this morning was great.We also checked him for the flu which was negative. Thankgoodness.

Off to the hospital we went and had labs and x-ray. X-ray was STAT so we it wasn't long before they came out to tell us he had bronchitis.We then went to get his lab results and they were crazy.His WBC and neuts were way high. His lymph were way low. Which is very abnormal for Brocs normal.They are normally all the opposite.

So he was dx'd with bacterial bronchitis.We were given the option of spend the weekend in the hospital or take REALLY expensive antibiotics at home.Of course we chose the latter.His ped asked us to call his Immuno Dr down at Riley to make sure we are doing the best treatment for him.We called and we have to report back with them tom afternoon if he is still running a fever. They are also interested to see if his blood culture will grow anything.Let's hope it doesn't.

We will update with any news as soon as we get any new results.

 

He is happy to do his breeathing treatments as long as his favorite show is on - POCOYO.

 

Have a great weekend everyone.

 

Smarties & a rock

Since the second week of school Broc has been telling me that its not fair cause some kids are getting smarties in their mail boxes at school and he hasn't.

Everyday I hear who found smarties in their mail box.Well I have not had the chance to ask the teacher what they are for.We thought maybe they were birthday treats from other kids and then it wouldn't matter.

Well Broc came beaming down the hall way at school today and he couldn't wait to tell me what he found in his mail box at school today.He had his very own pack of smarties.He was so happy.The teacher called him over today and explained what the smarties were for.They were for sitting quietly doing your ABC Book. Wow !!! Imagine that Broc sitting quitely working on something.

We are so proud of him for getting a reward at school for having good behavior. Here they are the prize pack of smarties.

 

 

The first thing he said when he got home was is Buddy going to be upset cause he didn't get any? Their love for each other is so precious.

 

 

Mark is on his second round of collecting 10 tickets at school for good behaviour.It did take him a while too to get all 10 tickets but he made it and he was allowed to choose something out of the treasure box at school.He chose this. Well I was about to take a picture of it and now its gone.Not sure where the rock went to.Anyhow , he chose a black rock.It was his treasure and he was so proud of it.

 

Both the boys are doing so well at school.Mark has come home with 100% for every spell test.Brocs writing is improving everyday and today I was told that from next week he will be going full day.

 

Oh my now the worry..... will he cope, will it be too much for him, what will I do???

 

All the things I had planned to do in the beginning. There are a few more appointments coming up for Broc so I will update when we have those.

 

As if things are crazy enough around here.I went for another x-ray on my wrist yesterday and it is broken.I will still be wearing my brace for the next 4 weeks and then I will have another x-ray to see how it is healing. Lets hope so cause you all know how I need both my hands.

 

Have a great weekend everyone.

 



3/4's of a day of school for Broc

This week Broc will be going to school until 1:40pm.On Tuesday he will go until 2:15pm so he can go to library. He was so excited when I picked him up today.

He was able to stay for snack. When we got in the car he said mommy it was so kind of them to let me bring my snack home. He had music for the first time today. He got to play with the keys of the xylophone. He loves music and so does his brother.

With him staying longer at school he gets to do all the fun things. I am so happy that he is happy about staying longer at school.He really has no concept of time but knows that he gets to do fun things if he stays longer.

He was a table helper today.This made him very proud.He said that if you get to school and you have a frog sitting on the back of your chair then you are a table helper.He loves being a helper. He can count to 100.Yes !!! can you believe it. He can count in 10's to 100 too. Oh my ...... my little guy is really learning so fast.

He is getting lots of help at school and we are doing extra work at home too.We are sure that he will catch up in no time.

 

This is what he did at school last week.We are so proud of him.

 

 

 

 

Picture Day

Yesterday was picture day.The boys wanted to wear the same shirts.Last year Mark wore a polo shirt and this year he wanted to wear one again.He said once he came home that everyone told him he looks handsome when he wears a shirt like that so now he thinks that he should wear a shirt like that everyday.

Here are a few pics we took yesterday before the bus came.

 

I LOVE THESE BOYS!!!!

 

 

Our Buddy

I have been so busy with illness,school starting etc that I have not updated on Broc in a while.This might be long , not sure yet.

It was a struggle to get our Buddy in school but we managed it and he has been going until 11am everyday.Unfortunately he did get sick after 4 days of school so he did miss a few. He is struggling a little at school but we are working with them to do lots of extra activities to help him.We are also doing extra writing,letters and numbers at home too.Our Buddy is learning words and can read a few too.He is really trying very hard and wants to do his best.

The second week of school he came home with this!!!!!

 

We are so proud of you Buddy!!

 

 

Onto the medical stuff :

 

Nuerology: 

Broc is still having some ballance issues.His Neuro is saying that they are illness related.So we might have an inclination when Broc is about to get a virus or something. She also agrees with the Neuro geneticist that he does have mito dysfunction due to his chromosome disorder.All his labs came back negative for a primary mito disorder.She has recommended taking some supplements for we are yet to find that a child can take. Either liquid or chewables.She also wants to start him on some calming meds to see if that will minimise on the falling so that he can slow down more.

 

G.I. :

So far the increase in meds have helped with his stomach migraines and gastroparesis.He does get tummy but not nearly as often as he used to.His appetite as also increased a little too.I don't want it to increase too much.

 

Heart and lungs:

Broc is still taking naps for 2-3 hours about 3 times a week.We are not sure how that will factor into his schooling.From next week he will be going until after lunch which is only 25mins longer than he was going.Our ultimate goal is to have him go for a full day but he doesn't have the stamina for that right now. He also had the croup virus a week ago but we got through that with lots of nebulizer treatments and rest.

 

Immunology :

Broc continues to have low grade fevers.Dr Nelson has been great about communication.We call him anytime he gets a fever over 101F.We see his ped and if the virus continues for longer than a week we see Dr Nelson.

 

ENT:

His ears continue to drain at night.When they put in his tubes in 2011 they put in T-tubes so they can stay in longer than regular ear tubes.He goes for a check-up every 6 months.

 

Vascular:

He is still doing great.He has great pulses.No need to hunt for them.He has very minimal leg pain and that is only if he over does it.It is the new blood circulation getting used to the new artery.He is still walking on hs toe with his right leg.He has not started P.T. yet as his ped wants to wait till his restrictions have been lifted.His scar on his leg is really not a wonerful sight so we are doing silicone therapy using patches on it at night.We are hoping that it will come down and look less angry.

He is still being very good as regards to his restrictions.When we do go outside we have to keep reminding him of no running or climbing.

 

For some strange reason his eyes have improved so he doesn't need his glasses anymore.He only needs to wear sunglasses when going outside.

 

Wow... I did warn you that it may be a long one. I think that is all the updates for now. If anyone has any questions please feel free to ask.

 

Thank you for all your love and support.

 

 

 

 

 

At Granma's House

We had our Grandson Bentley for the weekend.What a lot of fun.We made pancakes for breakfast.He called them "can cankes"it was so sweet.
We made cup cakes the next day and frosted them.He loves to bake.He couldn't wait for them to cool so he could eat one.We even chased bubbles in the yard.
Here are some pics of his weekend at Granma's house.

 

 

Eating pancakes for breakfast.

Playing with his uncles dirt bikes.He loved them especially the one that made noises.

Eating the cup cakes we made.

Uncle Mark is reading him a story.

Running in the grass chasing bubbles.

 

 

What a great weekend we all had. Thanks for spending the weekend Bentley.

A Day at the Zoo with family

On Monday we had a great day of fun at the Zoo with Brittany,Travis and Bentley.It was a little hot and sticky so we grabbed every tree we could for shade.

All the boys went on pony/horse rides.They were all a little skeptical but made it through. Here are a few of the animals/birds that we saw. Of course we had to feed the fish too.One of the boys favorite things to do.They love to watch the fish jump up and eat the food.A feeding frenzy.

 

Love this Pic!!!

 

 

 

Bentley riding the pony.He couldn't wait to get off. He was such a brave little boy.

Mark riding the horse.

Broc riding the horse.

 

 

 

The fish and their eating frenzy.

I was trying to get all the fish pellets for the boys.

 

This Emu was bent on chasing us in the open exibit.The boys were so scared and of course yo are supposed to stand still and be quiet and they will leave you alone.Needless to say Broc was screaming and Travis was hanging on to Mark as tight as he could until we got through the gate.I can only imagine being there size and having a big bird coming towards you.

Smiley , our favorite alligator.

 

 

 

A great way to end of a hot sticky day.Cherry Dilly bars. The boys and daddy's favorite.Mommy had a pecan mudslide.Very Yummy.