It's only 1.2cm

We have had many people tell us that Broc's legs difference is no big deal. So many people live with different size legs. All he needs is a lift in his shoe or a shoe that's made for him with a bigger heal.
Brocs issue is much bigger than that. As you read in my previous post about his upcoming vascular surgery he has 2 big occlusions or blockages in his right leg. His leg is not getting the proper blood supply needed to grow properly.

This in turn causes his hips to be out of alignment. His knees to be at different angles, his ankles to handle different weights and angles too. Before he had his first vascular surgery his leg sizes were so vastly different that his legs looked like they belonged to 2 different people.



This pic is from 2012 before he had his first surgery. You can see how much smaller everything on the right was and shorter too.

 So far this time round thankfully they are not that bad and we have caught this early enough for it to not come to that. His foot size is one size smaller than the other which makes buying shoes very difficult too.

Here are a few pics to show you what a leg difference looks like.

This picture is showing how his right leg is getting smaller and thinner than the left leg. His right ankle is also higher on the right than the left.

This is not a great pic but I wanted to show the difference in his legs when he is lying down.

This picture I think is self explanatory. It shows how much higher his left knee is than his right when he is lying on his back with his knees bent. In this picture too you can also see how much smaller his knee is than the left leg. His veins are also very prominent in the right leg cause the blood is working so much harder to get to where it needs to be.

We know the next couple of months are going to be very busy and we truly appreciate any help that you have to offer.

We thank you for all the love,prayers and support.

 

Brocs First Treatment

Sunday night we packed Brocs bag with dvd's, Iggie his blue bear and his IV play kit. We also packed some snacks and drinks for mommy too.
Yesterday Broc and I started off the day with putting Emla cream on his arm so that we could be ready for the day. This cream helped numb his arm so that when the IV was started he wouldn't feel anything. It worked wonders.

Once we got to the hospital we checked in and went up to the floor. Some of the nurses recognized Broc from the previous times he was on the floor. Except this time he was looking very well and chatty.

Broc wanted to document this day with pics. Next time I don't think we will do as many pics. Once we got to his room he took out Iggie and all his kit.

Broc went to work putting on his gloves,getting all the supplies out that he needed. I should have videoed it. He was so cute in telling Iggie what he was going to do, just like the nurses do for him.

Once Iggie was done then it was Brocs turn. His nurse Yvonne did such a great job. The whole process went so smoothly. Once she left we got Broc and Iggie settled into bed.

I even had to hang Iggie's IV bag on Charlie which is the name of Brocs IV pole. Ever since he was in the hospital when he was 2 years he named his IV pole Charlie. Everytime we go to the hospital Charlie is there with us too, never mind that its never the same Charlie.

The day went pretty well. Some of the meds made Broc a little sleepy so it was a little difficult to do his homework but we managed. Thank you Reathel for coming to visit us so that I could run down stairs to get some lunch. The company was wonderful.

Around 2:30 I left to get Mark from school and then he settled into the room too to get his homework done too.

Once his homework was done he joined his Buddy on the bed to watch a movie. It really helps that Mark is so used to hospital life. It really makes it so much easier. Before when Broc hadn't been in the hospital so often Mark used to get such anxiety. Now that he knows Broc does come home after being in the hospital for a little while and that he goes there to get better he is much less anxious.

Once we were all done Broc got his IV taken out which is the worst cause the tape pulls so much on his little peach fuzz hairs on his arm. Iggie got his IV taken out too and Broc put a band aid on his arm too.

Next time we will come after school so that Broc will not have to miss school. Mark will come with us and we will just hang out. Maybe daddy will join us too for dinner. Wings or Pizza party sounds good to me. YUMMY!!!!

PS. In case you were wondering the blue bears name is IGI. He was sent to Broc in the mail to help with medical therapy play. Broc has named him Iggie. 

Thank you everyone for all your love,prayers and support.

Marks Neuro app and an update.

Yesterday Mark and I went to Indy for his neuro app. I love Dr T. She is so easy to talk to and was even willing to give me some advice on Brocs recent issues. I love a Dr that is willing to help a mom even though that child is not her patient.

Dr T was very impressed with Marks progress that he has made. His neurological exam was very much improved. She said the first time we saw her she was very concerned about Marks neurology exam but didn't want to alarm me. I kind of find that funny cause seriously nothing could alarm me anymore.

We think we have finally found a good dosage for Marks migraines to stay stable. He is still having them but not nearly as often. It definitely is sunlight and exercise induced so she thinks when he is back out in the bright sun and riding his bike or playing hard on the playground they may return more often. If that happens she says we have a lot of room to go up on his meds. So for now we will stay at a maintenance dose for him.

I myself had a terrible migraine yesterday so driving back and forth to Indy was quite an experience. Thank goodness the glare wasn't too bright on the road and the weather was fine for driving.We made it home safely and layed down. It was really nice that daddy came home early so I was able to rest a little at least.

Mine is definitely brought on by stress. Yesterday I was trying to handle a bunch more things with Broc medically and Marks app. Sometimes my body just says its had enough and forces me to slow down.

I'm trying to conserve all my energy for the next few months coming up.Soon I will start filling up the freezer with meals for Mark. Lil Mark is not much of an eater so he is really easy to feed.

Brocs G.I. surgery will be Dec 4. His vascular surgery will be Jan 8. We got the phone call yesterday.This surgery cannot come soon enough as his pain is getting more and more frequent, which means he is getting less and less blood flow to the bottom half of his leg. So we are on the watch for any color changes or temperature changes in his right leg. As soon as everything is scheduled we will get the call about all the pre-op plans. Before both of Brocs surgeries he will be pre-med with prednisone. He will also have IV prednisone in the hospital and then a small dose after surgery while he is recovering. The benefit of this is to reduce the immune response his body will have to the whole surgical process it will go through. His immunologist feels this is what is happening to his body. Instead of us dealing with high temps and high eos levels again after surgery we are hoping that they will remain stable throughout. Unfortunately that may not be the case and he may still have some reactions but we are hoping to lessen the reaction. His body really takes a beating when it deals with these responses which effects his heart too.

About the choking episodes that Broc has been having too. After speaking to Dr T yesterday she feels that his laryngeal cleft needs to be fixed as it can be complicating matters too. Unfortunately we cannot get it scheduled during his Nissen surgery as the ENT is booked until Feb. We also cannot do it at the same time as his vascular surgery as there is a big risk of bleeding. Which means once Broc is completely healed from his vascular he may be looking at another surgery. The other issue is and we will discuss this with Dr Boaz next week when we see him is that it could be a central issue and is a result of him having chiari and his brain being squashed. So it may never get better. If its a central issue and just needs time or it may be there for life, then we may decide not to do the surgery. BUT that will wait till next year. He has not lost consciousness yet or passed out and is able to come out of an episode on his own so we are hoping that it will get better and not worse.

After typing all this I can understand why I had a migraine yesterday. Its not completely gone today but much better.

Broc has his first treatment on Monday so he will be in the hospital so they can monitor him closely. If anyone has any questions about his treatment please feel free to email me. sambuka18@yahoo.com

Thank you to all of you for all your love,prayers and support. We really appreciate everything that anyone is able to do to help us.

Marks second Bible Reading

Thank you to all the friends and family that came to listen to Marks reading and to the ones that listen via phone too. We are so proud of him. It takes a lot of courage to stand up in front of all those people. Well done Mark. You make mommy and daddy so proud. You have made Jehovah's heart happy too.
https://m.youtube.com/watch?v=C2uXi8-_CF8

Thank you everyone for your love and support.