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.......

Goodbye 2015 Hello 2016

Neurosurgeon, ICU, EDS, Chiari warrior,  rheumatologist, pseudomeningocle, physical therapy, occupational therapy, speech therapy, purple, blood work, Chiari Malformation...... these are just some of the words I can sum up our year since Brennan's diagnosis last December. This past year has been a roller coaster for sure. When he had his first brain surgery in January, we did not know what the road was going to be like. His journey had just begun. We have seen more doctors and hospitals that an average 5 year old kid should never see. I have spent most of my year reading articles, talking to other folks that have Chiari and EDS, advocating for Brennan since a majority of people do not know what both of them are. I have had to do a lot of research on my own to get a better understanding of both his conditions. I am a mom... I need to understand what my child is going through.

After his first surgery we saw some improvement. Within a couple months it seems like we were back to square one with the pain. He has always had some type of pain. After doing more research and more talking to friends who also have Chiari, we felt like it was time to move forward with finding a specialist. You know the saying "God puts people in your life for a certain reason?" I believe that is true. I crossed paths with two awesome women who are also Chiari fighters. If it wasn't for them, I don't know where I would be right now. They have kept me sane during this time and also put us on the right path to the amazing Dr. Frim. When I sent in Brennan's MRI CD's and reports to Dr. Frim, I felt a big weight come off my shoulders. I knew we did the right thing. We knew there was more to Brennan's journey. The mama instinct set in. You just know when something is not right with your child. . The day that I received the phone call from his office, it was a shock but at the same time it was those words I heard " Dr. Frim needs to see your son" that I felt Brennan was going to be in good hands. 

Right before I sent in Brennan's images to Dr. Frim, he was diagnosed with EDS (Ehlers Danlos Syndrome). It took almost all summer to get this diagnoses. We lived at Cardinal Glennon all July. We were there twice a week for testing, doctor appointments and check ups. It is pretty bad when they know you by name there lol. When we got the news of this diagnosis, it did not surprise me. I knew deep in my heart he had it but I just didn't know what type he had. After this diagnosis, he started physical therapy, occupational therapy and continued on with speech. I do have to say he has some pretty awesome therapist at the hospital. They all have been a part of his journey and I can say he has come a long way especially his speech.

Our first visit with Dr. Frim, it confirmed what Chris and I knew... he was going to have to have a second surgery to correct his first surgery.  Dr. Frim already had a game plan for his surgery. It was way more extensive than his first. When he did have his surgery in Nov, he was back there for a long time. When  Dr. Frim came out to talk to us, he was sweating and you could tell he was concerned. Things were a little more complicated than what he was expecting. Hearing the words "blood transfusion" during surgery was not what i was wanting to hear but I guess they sugar coated it when they called and said they were "controlling the bleeding". The care he received at Comer's Children's Hospital was beyond amazing. Every nurse we had along with the neuro team were just awesome. 

Right after Thanksgiving we were visiting Chris's mom and dad when Brennan got sick in the middle of the night and started having pain. It was scary because here we were 4 weeks post op and not sure what was going on. His temp had spiked up too. I took him to the doctor the following day were the doctor said he had a virus but he still had a lot of pain in his head. I called the neuro team up in Chicago and they said it could be just a virus nothing to do with his surgery. Dec 1, Brennan woke up screaming in pain again and temp spiked up. I knew something was wrong again... so we went to the ER. They did a CT scan which did not know anything at that time. They did the blood work and it came back his white blood count was so high they admitted him to find out what was going on. He still has having a lot of head pain and back pain that our pediatrician was going back and forth with what he could have. Around 4:30 Brennan had fallen asleep. I noticed at that time he was "shaking" and once I got up from the couch to see what was going on I knew this was not normal. My mom was with him and also saw him do this. I called for the nurse and within minutes our doctor was in there and Brennan was beginning to have seizures. This prompted them to tell us they were going to have to transport him to Cardinal Glennon. Hearing those words, everything was spinning around me. Luckily Chris was there just in time to hear what was going on since he had gone back to work and I had stayed with him until they discharged him. 

One of my biggest fears had just come true.... having to transport my kid to a bigger hospital and not having a bag ready to go. I had just enough time to come back to the house and throw stuff in the bag and get back to the hospital to find the EMT's and ambulance ready to go. My world started to feel like it was crumbling around me. One of most scariest moments is seeing your child so sick. Once again, I had to say goodbye to my daughter and my other son again and tell them I love them both. Breaks my heart when i relive that moment. So many tears and so many emotions going on that day and night. Hearing my other son ask if his brother was going to die made it even worse. We reassured him that he was going to a bigger hospital to help make him better and that we would be back soon to be with him and his sister. Once we got to Cardinal Glennon they ended up doing more blood work and started him on an antibiotic. They did do an MRI on his head come to find out he has what is called a pseudomeningocle, a small leak that is collecting at the base of his brain. It is normal for people who had had this type of surgery. They also believe he did have some type of virus too  They did do an EEG on him and it showed some questionable activity. We now carry anti-seizure meds just in case with us at all time since we now know he is capable of having them. 

This year has taught me so much. I knew when to keep pushing for answers and to never give up. Always listening to the mama instinct! Even though we added more and more doctors to our list we had to keep going until we got the right answers. We will still keep pushing for answers when we go to our doctor appointments next year. I have found what my strengths and weaknesses are. I have tried to keep strong throughout this journey but there are times I have found myself in tears because there is only so much a mother can do. You can't take the pain away when your child is screaming because his head hurts or other body parts hurt or your child is crying because some kid made fun of his scar on the back of his head. I tell Brennan he earned that scar. He is a warrior. Don't let others bring you down. I worry about him everyday. I always pray for a good day but some days that is not the case. I have learned you have to be your child advocate. There is no better person that knows your child better than you. Always fight for what he/she needs. I am always posting things on my Facebook page about Chiari and EDS. I know some people get tired of seeing it. I post it to make awareness about it. I like to keep others informed of what Brennan goes through on a daily basis. It may help others out to understand what these conditions are. One thing I want to make sure people understand is this.. just because Brennan has had 2 surgeries, does not mean he is cured. It only slows down the progression of this condition. Chiari and EDS are both non-curable conditions. He will live with this the rest of his life.

This journey continues but I am praying his journey has a little bit of light at the end of the tunnel for 2016. Praying for no surgeries. Praying for a much better year than this year.  To the other Chiari fighters going though hell.. keep fighting and keep spreading awareness.