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.

February - what a month!

I signed up for auxillary pioneering for the next 3 months. I have made it a goal to do it every year so this year was no different. Except I got sick and was down for 2 weeks and then Little Mark got ill with a similar virus and was down for a week or so and then of course the weather was freezing and snowy so that didn't help either. I am very happy to say I made my 30 hours well 31 actually. Thank you to all my friends and husband for making this possible. If you rely on Jehovah things really work out. Hopefully the next 2 months there will be much less sickness and warmer weather. We have the Memorial campaign to look forward to as well. So exciting!!

We are very grateful for the happy news we got about Brocs leg but after reading the actual report from the radiologist there is still a little hesitation and blockage. Not sure why the Dr felt she had to paint such a rosy picture for us. We hope that Dr E will be back when we have our next check up in September.

The boys got wonderful report cards and are doing really well. Mark seems to be our whiz with all A's and Broc is doing great too.

We have bought special pencils for the boys to use at school. They are called PenAgain. They have a special loop where your finger goes through and there is little to no strain on your index finger. We are hoping this will make cursive writing much easier for Mark and also for Broc when he starts next year. They also make pens like that too.

Little Mark had an MRI done this past week. He did very well with the anesthesia and were home about an hour after he came back to the room. His MRI had the same findings as we found at CHOP when he had his MRI there. I had the same findings on my MRI too which I had done at CHOP. Our next step is for Mark to see a neurosurgeon and make sure that the spinal fluid is flowing properly around his brain and there are no narrowings. Since I have the same dx we have decided that I will go through all the necessary testing and if there are any solutions to the findings then Mark will be seeing the neurosurgeon too. He gets very anxious when he has to undergo anything like this so to not stress him anymore we will give him a break until all my testing is done with.

This appears to be a lengthy process as I first need a referal from my pcp which seems to be a process in itself. Hopefully she will be willing to do this for me.

Mark also got his sibling beads from the Beads of Courage Program. He is so happy to have a string of beads just like his brother.

 

This is Brocs string of beads from his Leg Bypass surgery in 2012. Every bead represents an IV,lab draw,procedure,NG tube etc. Basically anything he had done to him he got a bead for. We have signed him up for the catch up program too so in a couple months when Brocs name comes off the waiting list he will receive a bead for everything he has ever had done to him since he was born. It really is amazing to see everything in beads.

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

Some Updates on Buddy's & Mommy's appointments

I will do my update first as it is short and sweet ( I mean pretty). I had a short arm cast put on on Monday and have to wear it for 2 weeks.After that I will be doing some intense therapy to get the full range of motion back in my wrist. I have been using it a little too much as it is hurting tonight. Nothing a little pain med wont take care of.

Isn't it pretty? I figured how many times in your life do you wear a cast. I might as well make it a stylish one.

So Broc saw Neuro and Immuno this week. Neuro thinks he may be having migraines and that is causing his off balance ,excessive talking and many other things he does when he gets ill. She thinks the migraines are causing him not to focus well and just total confusion in his body. His system is a total mess when he is ill so it could be a possibility. She wants us to try and describe his headaches to me and show me where they hurt. We have a picture of his head and he has to point on the picture where he hurts.

Immuno was very surprised that Brocs illnesses have not let up at all and nothing has changed. Not sure why he was so surprised.... He drew all his immune levels ,anti body,and every vaxine anti body level to see if they are still the same or if they have dropped any. He also asked me to get all the bills we have gotten from the insurance when Broc has been ill. Which includes cost for CBC , Drs visit,

x- ray,and then hospital cost if he was admitted. He is hoping to make a case with the insurance to ask them to approve a 3 month trial of treatment vs the cost of Broc being ill several times a month. He is going to be meeting with the medical director of our insurance as this will be Brocs only hope. We are not certain that this will work but he wants to give it a try. If it doesn't work then we know that we have done everything we can. Prophylactic ABX are not an option for him due to his risk of c- diff.

He also has chronic drainage which we need to try and dry up as its causing him to be re-infected over and over.

Although I am not holding my breathe on this as we know its a long shot we are certainly going to hope he gets approved.

Here are a few pics from last weekend when we went to the Special Day Assembly.

Sitting on the bench at Bob Evans after breakfast.

Taking a walk during the lunch break.The boys love to come outside to see the fish.