It's been a while.....

Yep, its been a while since I blogged about Brennan's journey. These past few weeks have been a rough one. Lets just say 2017 was a roller coaster. We have been up and down and around and around and around with doctors and other medical professionals. Brennan still has good days and bad days. But I want to take a moment and talk about Chiari, EDS and everything in between. I guess this is my way of blowing off steam. Those that know Brennan know that he has had a rough road. We also have many friends who continue to fight the good fight even when they don't want to. Chiari is a monster. SURGERY is not a CURE!!! It only slows down the progression of Chiari. Those who have had the surgery may experience some relief for some time. Others have gotten worse and other symptoms arise out of it. Some may need repeat surgeries for a shunt if they have one because it may malfunction or not work at all. For the family of the person who has Chiari, it can take a toll on them also. I have known families it has affected greatly. Family members who have had to step up and help with daily living, chores or just helping them function in general. Depression is a big one. Those who had a life before Chiari can not longer function. It eats away their soul but yet they are pushing themselves daily until they can not longer push. I have seen it, both in Brennan and friends. Sleep away the pain, getting angry because the pain is real. Yet, some people say "Oh well, they don't look". There is no "look". It is an invisible condition. Until you have had Chiari and experienced it for yourself or even have talked to a family member of a Chiarian, please don't judge.

EDS... Ehlers Danlos Syndrome, another monster that lurks around in the backgrounds. Pain that is real but yet society just looks at you like your crazy because "it can't be that bad" or "just a flare up".  Pain pills and sleep are your best friend.  Eating has become a chore and your body can't handle it so you have a feeding tube to get the nutrients you need.  Joints hurt so bad you want to tear them off. Stomach issues too embarrassing to talk about with others because they don't understand. Muscles weakening and can't walk long distances that you you end up in a wheelchair. You have to get a wheelchair card to park close and get angry people yelling at you because you are not "disabled" It is also invisible and debilitating. You get the " you don't look sick" speech. Again, until you experienced this for yourself or have talked to a family member of an EDS'r, please don't judge.

Lets talk doctors, specialty doctors specifically. Now, there are some doctors out there that truly know what they are talking about. That have actually studied and understand what the person is going through. Then there are those who keep passing you around to one doctor after another after another, you are racking up medical debt so quick because they can't figure out what is going on. Some how you can not get assistance either because your either making to much or they just deny your diagnosis. That is a whole other story we will save for another day.  Some doctors just give up in general and quit seeing you because they can not help you anymore. This is the one thing that really sets me off. We have been battling this for 3 years now and yet we doctors saying they can not help B anymore because there is not much more they can do. Do you give up to as a parent or do you fight like hell to get the help he/she needs? I spend a good majority of my time researching and reading articles on doctors and studies that have been done with Chiari and EDS. Yes, this is not an easy thing to deal with. I will be truly honest, it has stressed me out. These last few weeks I keep asking myself, why this? Why Chiari, EDS, being on the Autism Spectrum, ADHD, Oppositional Defiant Disorder, Sensory Processing Disorder? Why, why why? Why can't it be something easy to deal with and handle but instead we are up against what seems like a million things in one.  For my friends dealing with Chiari, EDS and whatever else that has been added to their list they have felt the same way. If you look up Chiari I will assure you will see the list that goes on and on and on for things associated with it. It is always and will be a continued fight.

Insurance will always be a fight.  From my opinion, I do not think they read charts and understand the diagnosis. Denial of treatment should never be a option for anyone, especially when you have a service/treatment that is very much needed.  Makes me sick when you see "medically not necessary". And how is it not "medically not necessary"... did you read on the diagnosis? Understand what it does to the body? Nope.. and that is how it ends.  Appeal it.. yes.. denied.. yes.... breath.. breath... breath...

So to my son and to my friends who fight this.... we continue to spread awareness and fight on. We may all be tired and stressed out but we have to continue on. 💜💜

Wishes and hope

The new year is approaching fast! I can't believe how fast this year has gone! Just seems like summer ended and now we face the cold weather. For Brennan, the cold weather is not a good thing for him. His pain has been up and down. It seems like no pain meds have been touching him. There are days he comes home and crashes. He pushes himself to the point he wears himself out. These days we take it day by day anymore. I am counting down the days until our next appt. December 22nd we will be going over to Children's Hospital for a 2nd opinion for his Ehlers Danlos Syndrome. There is so much that goes on with Chiari/EDS that it is hard to explain.

These past few weeks Brennan has been busy. He was in a wedding at the beginning of December for a good friend of ours as one of her ring bearers. He looked so handsome that day!!! We got through his Christmas program. He was so nervous but he did so good! As we are wrapping some things in the holiday season, I have a few things I want to see happen in 2017.

My wish and hope for next year is that more people take the time to understand what goes on with people with Chiari and EDS. I can't tell you how many times I had to explain over and over and over about Brennan's diagnosis' to other people and those people look at me and "He is fine"... "He looks normal"... "He is not sick".... Let me tell you this... it is not what is on the outside... it is what is on the inside. He is mangled inside.  It is about advocating for Brennan and the Chiari/EDS community. To raise awareness about Chiari and EDS. Not much is known on both of them. Heck, when we were first diagnosed I never heard of both of them. I have done so much reading on both. That is how we have to educate our selves on this. Some doctors have no clue either. It is pretty bad when a hometown doctor has to google what Chiari is.

May is EDS awareness month and September is Chiari awareness month. It is important for parents of children with this along with people that suffer with these along with other things make people aware that these exist. I am so happy when I meet new parents that have a child with Chiari, EDS, ADHD, Sensory Processing Disorder, Oppositional Defiant Disorder and Adjustment Disorder. We get it!! We can feel normal!!! I get excited to meet adults that have this... we can relate.. talk.. cry... have a shoulder to lean on.

This has not been easy to deal with. It has been a roller coaster... we take it day by day.. literally. Lots of tears shed...not knowing what can/could happen. This mama bear has been stressed out trying to figure out what my next step is. I am hoping and praying for more answers on the 22nd.

I am hoping everyone has a very Merry Christmas! If you know a Chiarian or a person with EDS.. give them a hug. I am pretty sure they will appreciate!!!

Here are a few pics from this past couple weeks!!!

This is what pain does... he sleeps to help alleviate the pain. (Go Blues)

Christmas program

Ring bear duties

EDS and the St Louis Blues

Hello all!! Time for an update on Brennan. I know we have had some people ask how Brennan has been doing and so we figured it was time to update. November 2nd we celebrated his "Zipperversary".. his anniversary of his 2nd brain surgery. Can't believe it has been a year already! I sat looking through all my Facebook comments and pictures from his surgery and I couldn't help but get teary eyed. That was a rough one for me to sit and look through the pictures and read the comments. This kid is a warrior. He has been through a lot and still continues to amaze us.

Couple weeks ago we entered Brennan's picture into a contest for St. Louis Blues tickets. Last Monday we got the call that Brennan was the winner of those tickets. I was very shocked he won. He won two tickets to the Winter Classic. The Blues against the Chicago Blackhawks at Busch Stadium. How cool is that? His smile on his face was priceless when I told him he won. It is the little things that make him happy. St. Louis Blues hockey makes him happy. Chris will be taking him to the game. It is good father/son bonding time! Making memories... that is what I want for him. Thank you to those that shared and voted on his story on Facebook. We appreciate it very much!

The last couple weeks he has been struggling with his pain and some other things. I called Dr. Frim regarding his pain he has been having if it could be related to his Chiari. After much discussion and also talking to Brennan's psychiatrist and pediatrician they feel that his Ehlers Danlos Syndrome is probably the issue. They all wanted a 2nd opinion. I called and found the Pain Management Clinic at Children's Hospital in St. Louis. I talked to them a great length about Brennan and they agreed to see him. We got our referral sent in and within a day they called and scheduled us.  So we are scheduled Dec 22nd for a very lengthy appointment. We were told to expect more testing.. I have more paper work to fill out.. that is always fun! I wish everyone had the same paper work to fill out so I could just make copies lolol.

Brennan's therapy is going good. He is working very hard in occupational. He still has a lot to work on. We have our good days and bad days. Speech is going so good that they may be releasing him soon. He has come a long ways!!!!

I will keep everyone updated when he goes to his appointment on the 22nd. Hoping it goes good and we can get more answers for our warrior!!!! Until then.. we deal and keep moving forward!

One of those days

Hello all! I love that the weather is changing to cooler days. The smells of fall are in full force at our house! I may love this weather but this weather does not do well with Chiarians. Pressure changes... rain... it just does not like them. Brennan has been having roller coaster days. We have been on the new meds for 2 months now from Dr. Bambanek. We love when he has good days. It makes it so much easier in the house. Then the days when things escalate we take it hour by hour. We started school and was hoping this medication for ADHD would help him focus. His behavior is good but homework not so much. We have struggled to get it done at home. Some days it is a fight.. other days it is good. We have been trying to keep a routine with him after school. He is a routine type of kid. We continue to be monitored by Dr. Bambanek by seeing him every 3 weeks. Any new behavior changes he wants to be updated on. I love that he is keeping up with him. Hard to find a doctor that cares. He still continues to have the headaches but nothing like what they were. We monitor them and anything extreme we are to call Dr. Frim.

On a fantastic note... Brennan graduated from physical therapy last week. He has been working hard for over a year now and has met his goals. Chris and I will continue to work with him at home on things. We will miss his physical therapist Andrea very much. She is truly an amazing therapist. He continues to have occupational and speech therapy at the hospital. He is working very hard to meet his goals but we still have a long way to go.

September is known for Chiari Malformation Awareness month. I know.. I know.. some people on my Facebook probably got tired of seeing everything I have posted about Chiari. This is very important to our family. We advocate for Brennan since many people do not know about it. I get excited when we meet someone that has been diagnosed because they understand how it is. I am hoping by posting all the information that some have a better understanding. This condition I would wish upon my enemy.

We continue to keep in contact with Dr. Frim on a as needed basis unless something drastic changes with Brennan. With Chiari.. anything can happen. His next appointment with his rheumatologist is in December regarding his Ehlers Danlos Syndrome. He continues to take his daily pain med to help with the joint pain. Every 6 months we are monitored by Dr. Moore.

We are selling t-shirts and hoodies to help with Brennan's journey with Chiari but we are also helping my dear sweet friend Donna who also has Chiari. She recently had shunt surgery to fix it. We are hoping she will not need another surgery for a while. Proceeds from t-shirts and hoodies will help with both of their medical bills. Attached is the front and back of what they look like:

What is on the front

What is on the back

Here are  few more pictures for the update

Graduation Day for Brennan from physical therapy!!!

Picture day for school!!!!

We continue on our journey with Chiari. Everyday is a new day. We make the best of it!!!!

Still working on the puzzle pieces...

Today another chapter has been written in our Chiari book. We have been dealing with some of the fun stuff that is related to Chiari. You see... Chiari is a monster. Not only do you have your Chiari, you have your other things that go along with it. For a while now we have been battling Brennan's behavior. It has been escalating and we had an appointment over at Cardinal Glennon for the Knights of Columbus Behavior Center for December. I made that appointment back in February of this year but I am not waiting almost a year to see them. I did some research and asked around about therapists that could help us out. We finally found someone to help Brennan.  We have been seeing Amber for a couple of months now and we have accomplished a lot. We have seen some other therapists to help get Brennan diagnosed. Finally we have answers that we have been waiting for!

Today we went and saw Dr. John Bambenek. After a long appointment, Brennan has been officially diagnosed ADHD http://www.webmd.com/add-adhd/childhood-adhd/adhd-children, Sensory Processing Disorder (SPD) https://en.wikipedia.org/wiki/Sensory_processing_disorder and Oppositional Defiant Disorder (ODD) http://www.mayoclinic.org/diseases-conditions/oppositional-defiant-disorder/basics/symptoms/con-20024559. That is a lot on top of his Chiari and Ehlers Danlos Syndrome. Some might not know about any of these disorders but they are real. They are a nightmare. His little brain has so much going on in there. He will start on medicine to help him deal with everything going on. Chris and I have said our main focus right now is to make sure Brennan can get through school.

I am his advocate along with being his mother. I know some people probably get tired of me posting articles on my Facebook page about Chiari and ED but it is raising awareness. I can now add ADHD, SPD and ODD.  There is not enough awareness about these disorders. I am blessed with meeting people who have children going through the same thing along with friends fighting too. I do not feel alone like I used to.  We will continue to fight on and deal with what is ahead of us. For now.. another chapter is written and another piece of the puzzle has been found.

Getting ready for the summer!!

As I write I am sitting here during one of Brennan's therapy sessions.  Every Tuesday and Thursday Brennan comes for physical, occupational and speech therapy at the hosptial. We have been blessed to have my mom take him for us so Chris and I can work. Today, I came to see his progress. It is the little things that make me smile. I can remember when the doctors said he will need therapy. First we started with speech. Our speech therapist at the hosptial and at school are amazing. We went from not understanding him to now he announciates his words much better. He still stutters and slurs from time to time but what a big difference it has made! When he was diagnosed with Ehlers Danlos Syndrome last August the doctor said he definitly needs physical therapy to help build up his muscles. His motor skills are still not the greatest but he works hard. He has been practicing throwing a ball and working on his balance. There are days he hurts by the time he gets home because he works that hard and it wears him out. When he started occupational therapy he had the hardest time writing his name and letters. Honestly..  you couldn't make out some of the stuff he was writing out. I am proud of him on how on far he has come with his writing. For the first time ever, last week he had the best writing ever!!! He still has a hard time gripping the pencil but it is getting better.

This is the paper he brought home with his best writing ever!!! So proud of him!!! 

Seems like we went crazy with doctor appts at the beginning of the year and now they are coming sporadically. His 24 hour monitor he had to wear showed some tachycardia but nothing to worry about. We do not have to go back and see the cardiologist! He had his sleep study which came back abnormal so the neurologist wanted to do an EEG. Those results showed the damage of what Chiari has done to his brain. His brain has been squished for so long. Lots of therapy down the road for him. We go back to see Dr. Geller and Dr. Moore in June for our follow ups. In August we go back and see Dr. Frim for a follow up from his surgery and set a game plan for school next year! 

Our parks and recreation has set up a baseball league for special needs kids called the Challenger League. We are excited that he gets to play in it. Dr. Frim gave us his permission to let play  and we are excited that he gets to do something "normal". It has been hard on him since his brother plays baseball and he can't play. He sits in the dug out supporting his brother or he is crawling around in the dirt lol. He just wants to play and this is a great opportunity for him to meet new friends too! 

Over all.. we have our good days and bad days. I will take the good over the bad anyday but that is not always the case. The big appt we have been waiting on is his behavioral/developmental assessment. We are not scheduled until Dec 20th. Until then.. we wait and hope they can move us if a cancellation comes up!! For now we work hard in therapy and we will enjoy some baseball!!! :)

Time marches on.....

Looks like it is time for an update on Brennan! We seem to keep busy in our household. With the new year started I was hoping to have more time but it looks like that is not the case. Tonight as I write we are in a sleep study for Brennan. I thought I was going to pass out when he did but my mind still can not shut off plus we are right by the helicopter landing pad. It has been busy tonight between Cardinal Glennon and SLU. In February we saw Dr. Geller, his neurologist, for a follow up when Brennan was hosptialized with seizure activity. We had a pretty in depth conversation about his Chiari and EDS. Now that we have had the surgery it is time to figure out some other things that are going on. We are currently in the process of being tested for ADHD, PTSD and a couple other things. I have always questioned this about Brennan. It was time to move forward with this stage. Paperwork has been turned in and we await a phone call from the Knights of Columbus Center here at Cardinal Glennon. Seems like the conversations I have had with other mothers who have a  child or children with Chiari also have ADHD. It helps talking to an awesome group of mothers! Some articles have linked these together. Pretty interesting! Brennan is also a restless sleeper so he also ordered a sleep study. As I write Brennan is asleep. Lots of wires connected to him but we are hoping it will give us some answers! We also saw Dr.Frim in February. That was a follow up from his surgery in Nov. Brennan was released to go back to PE and recess. That was a big deal for him... he was missing playing with his friends! Dr. Frim will continue to monitor his pseudomeningocele ( leak at the base of the brain) for now. If it starts to bother him then we will let him know. We will head back to Chicago in August before school starts. He is definitly keeping up on his Chiari. We will also be back up there in Nov for his one year check from surgery. Dr. Frim is pretty amazing! Highly recommend him!!! March 3rd we met with Dr. Showengerdt, a cardiologist, to see about these episodes that Brennan has been having with his heart. After explaining about these episodes and doing an EKG, he felt that he needed to put Brennan on a 24 hour heart monitor to see what is going on. We are awaiting results and should know in a couple weeks what is going on. We also met with Dr Moore and Dr Rizwan in the afternoon. They are both his Rheumatologists that deal with his Ehlers Danlos Syndrome. After a very long visit and lots of talking they both felt like it was time to put him on a daily pain med to help take the edge of the pain he has. They did a thorough physical exam and still come to the conclusion that Brennan still has weak muscles and very loose joints. We are continuing physical therapy to help strengthen him up. They also ordered some bloodwork on him. Right now we are just waiting to see what some of these tests say.... heart monitor.. sleep study.. Knights of Columbus. We will continue to wait and move onto the next chapter. Still a long road ahead.......