Neurology update.

Yesterday was another early morning for us. I was hoping both boys would sleep on the way there but that didn't happen. Thankfully I only had to wrestle with them twice.

As we entered the lobby area of the hospital we were met with these adorable dogs and their owners.

Little did we know the boys would be on the Riley Childrens facebook page and Instagram. What a surprise. The boys really love animals but unfortunately we don't have the time to care for any. When we are at the hospital we love seeing all the therapy dogs.

On our way to our app we ran into some more friends and got to exchange hugs. We love running into our "Indy family" as we call them.

Now onto the app.
Overall Dr Smith is really happy with how Broc is doing. She did learn about his new mutation as its been about a year since we saw her last. It is really difficult to know what or how it will impact Brocs life. We did learn that he is at risk for seizures. She told us what to look for and to call 911 immediately. Because his mutation effects his extra cellular matrix which is everywhere it effects his whole body. We spoke about all the regression he is having with maintaining his muscle strength, loosing his balance, falling a lot and loosing some skills. Unfortunately everytime he has a virus everything in his body is effected. Its like little pieces of his brain are effected and then he has to learn to do things over again. She kept stressing that no body knows anything about this mutation as Broc is the only person in the world so he is writing his own book. We must encourage him to do anything he wants within reason. We must take each day as it comes. The best we can do is support him as best we can. Treat him and keep him comfortable on the bad days. He needs to continue with OT and PT to keep maintaining his muscle strength and co-ordination.

After the app we met Kelly and Aiden for lunch and then we headed to the Play Zone. There we met some more cool people.

The boys were really into their game when Chase from Paw Patrol came to say hi. There were a lot of volunteers there too which made for a fun afternoon.

All in all it was a long day but a fun one.

Now to keep Broc healthy for his upcoming surgery at the end of October.

We did hear back from Brocs Vascular Team and they are concerned about his legs. They want him to be completely healed from his cleft surgery and then they will schedule an angiogram to see where the blockage is.

Thank you for all the love,support and prayers for our family.

    

Broc singing

All things Brocoli

For many of you that don't know Brocoli is Brocs nick name. Its the name my mom gave him when he was little and its stuck. It used to be his favorite vegetable when he could eat.

We were a little concerned about Brocs leg length again. His P.T. was noticing some things that were concerning. He is not putting as much weight on it as he needs to. He is toe walking a lot when he is not wearing shoes. He is also having increased pain in the right leg again with riding his bike or playing on the court with his dad and brother. We emailed his Vascular team and they ordered an x-ray of his legs. Unfortunately Brocs legs are now 8mm apart. They were 6mm in May when we went for our follow up. We have not heard back from his Vascular Team so we are hoping that he can just wait till Nov for his follow up appointment. He will have his legs x-rayed again and if his legs are 9mm or more apart they will do an angiogram to see if there is another blockage. If there is another blockage it unfortunately will have to be repaired.

Thursday Broc and I took a trip to see the pain clinic. Unfortunately due to the nature of his diseases he has to deal with a lot of pain. The Palliative Care Team have been incredible with helping us manage his pain but sometimes he deals with pain that the meds do not even touch. Dr Nouri was so helpful in suggesting more supplements we can use and more techniques such as heat, massage, rocking,distraction etc which many of them we already use. He also suggested that Broc see a therapist to help him manage all his feelings better too. When he is in pain he is a totally different person and understandably so. Pain makes a person do and say things that they really regret afterwards and its so sad to see and hear especially as a parent. It also changes the whole family dynamic, the things we do / miss out on as a family and most important of all the relationships we have with each other in the family and outside. We are hoping that with these changes and added supports Broc and our family will help him to manage his pain better as this is something that he has to learn to live with.

We did get the call from Cincinnati Children's Hospital that they are willing to do Brocs surgery. That will be done at the end of October. They will also be checking a few other things out while he is under and in the OR. We are hoping for just an over night stay but as we all know Broc loves to make things so interesting. Its a very simple procedure but any time Broc goes under anesthesia his heart is at risk. He does not heal very well either so his ped here locally is ready for anything that Broc will throw our way once we are back home. Calls and texts are welcome while we are down there. We have not decided if we will all go down as a family to Cincy or if only Broc and I will go. It all depends on if  Mark will be able to take off work. If I end up going with Broc we will need lots of help please with taking care of Lil Mark during the day.

We had some time to spare while at Riley so Broc played in the Fun Zone. He has never been able to go there when we are inpatient as he is always too sick. 

 Thank you for all your love,prayers and support. Thank you too for all the friends that help out. Knowing the boys are well cared for and taken care of while I'm gone is a great relief.

No surgery for Lil Mark

Yesterday Lil Mark and I took a trip to Riley bright and early.

So early we watched the sunrise. He was so nervous on the way there. He is not a fan of going to sleep and having people take pics of him.

Kelly and Aiden came to visit us and arrived just in time to see Mark Before he went back.  They came with me to the waiting room and kept me company. I love hanging out with all our Indy friends.

He was so brave and woke up like a champ. Ms Pepper was so proud of him.  She has taken care of both the boys in MRI since 2014.  After MRI we went to see Dr Smith to find out if he needed to have surgery.

She gave us the best news ever. Mark doesn't need chiari surgery and has been discharge from the nuero surgery clinic unless he has any more issues. We are so happy for this news as our Buddy Broc will be keeping us very busy in the next couple of months.

Thank you for all the continued love, prayers and support.

First homeschool field trip.

Last week we went to the Griss Mill. We had a fun day with friends and learning lots of new and interesting things..

Brocs ENT visit

Yesterday we took a trip to Riley to see Brocs ENT Dr. The visit was not all that great but we have a starter plan. The ENT wants Broc to have a swallow study to see if he is aspirating on liquids. I'm really not too happy about that because that means that we have to make another trip down to Riley. But we will do what we have to, to fix our Buddy.

If he is aspirating on liquids which I don't he is then he will go to the O.R. and surgically fix his cleft. If he is not aspirating then he wants the "wait and see" approach. I am totally not on board with that. I am not watching my child choke on nothing all the time. Moma Bear will come out if we have no plans after the swallow study.

If that is the case then we may have to go back to Cincy for a plan as they are the ones that diagnosed him with the laryngeal cleft.

Overall Broc has been doing really well. We have not had any high fevers which means there have been no hospital admits which means lots of family time at home.

Homeschooling is going great. We have a couple field trips lined up for the boys too.

Broc is also starting Physical Therapy too, so with that and Occupational Therapy and his home therapy schedule we should be able to manage his sensory and motor skills pretty well.

 The weather has been cool enough lately that they can ride their bikes and spend more time outside. Unfortunately that does leave Broc very tired the next day but to him and us its worth it. To see him having fun and doing things with his brother is PRICELESS!!

Our next trip will be for Marks MRI's to see how his Chiari is doing.

Thank you for all your love, prayers and support.