Let's rewind and start from the beginning.....

Now that we are started the blog about what Brennan's diagnosis is, I have had several people message or text me asking me what exactly are the symptoms of Chiari and what led to the diagnosis. Let's start from the beginning! When I was 18 weeks pregnant, we had our gender scan to find out what the sex was. At that doctor appointment, the ultrasound tech kept looking at his head and a perinatologist came in to look at the ultrasound. They found what is called a choriad plexus cyst in his brain. Apparently these are common in babies in utero and can dissolve on their own. As the weeks went by and we monitored the cyst, we were gave the all clear and was told it was gone and to never worry again.

Fast forward just a little... January 28, 2010.. we welcomed an 8 lb 8 oz baby boy. He was our Buddha baby. We were excited to add another boy to our family! As time went on, we as parents tried not to compare our boys but just noted that Tyler did everything early.. ie.. walking, talking, getting his teeth in early, so we thought Brennan would do the same. When Brennan was a year and a half we noticed he was just progressing a little slower. Some babies progress at different things in their own time. By the age of 2 Brennan never really said much. We started noticing that something was off about his hearing and speech. I took him to our pediatrician at the time and stated our concern with his hearing and his speech. He really didn't want to listen and take in consideration what we were trying to say and kept putting us off. We went a few more times to this pediatrician and he pretty much "blew us off". Being a mother I was concerned and I was not happy this doctor didn't want to listen.

We also thought we were going through the terrible 2's with this attitude. The melt downs and screaming fits.. enough to put any parent over the edge. Needless to say.. this is what opened my eyes realize that something was really off.. the mother instinct set in and I  at that point was very concerned.

When Brennan turned 3 we noticed things were not getting any better. I noticed he would go into this "space out"... he just looked really tired, his eyes would glaze over and he just looked really out of it. He never really said much to us about anything hurting but you could tell something was off. He would also try to talk and ask us for something or show us something but it was very very hard to understand him. He would get frustrated because we couldn't understand and would show us what he wanted.

One day I did ask him when he went into these "space out' fits if he was tired. He said no but I asked him he didn't feel good and he pointed to his head and tried to get his head hurt. I didn't think of anything at the time and gave him Tylenol. As time went on he would get these headaches here and there and would always point to the back of his head. I always had in the back of my mind that maybe his headaches were attributed to the cyst he had but then reassured myself it couldn't be because the doctor said it was gone.

That same year,  Brennan went in for his preschool screening and they wanted to know what the concern was with him. We stated his speech and hearing. After having him evaluated, it was definitely clear, we had an issue and we needed to see an audiologist. Made an apt with Dr. Lane and he ran a bunch of tests on him. He indeed had some issues and that same day we were scheduling an appt with Dr. Papazian, an ENT specialist. Went and saw him and it was pretty clear he needed tubes to help with what they said was "partial hearing loss". He had the surgery to put tubes in and Dr. Papazian was pretty sure these would help. Brennan started Pre-K later that year and started speech therapy. As that progressed we still felt like we were seeing progress but yet sometimes we felt like we were not seeing this at the same time. Still having these "space out" fits but things changed within the next few months.......

Brennan would go to sleep and in the middle of the night he would pee the bed. Mind I add, he was also potty trained. Everytime this happened with the episodes of peeing the bed, he would tell us his head hurt. Showing us the same spot.. the back of his head. We really started to wonder what was going on. We always thought it was something to do with change... he likes to be on a schedule.

Again.. things were not getting any better.. the attitude, not listening, getting in trouble.. it was enough to put me over the edge at times. People that know Brennan always said there is just something.. something that was off. I would talk to friends and voice my concern of this. There were many days and nights of tears from me because I knew something was just off. I was upset because I couldn't handle it. I thought his hearing and speech would be better, tried breathing in and out when the temper tantrums were in full force but that just wasn't the case He definitely likes to push buttons. His answer for us when we asked him why he would do things he was told not to do was "my head hurts'. That was his excuse for everything...

Fast forward a little, the peeing episodes kept coming on. I started questioning myself again about that cyst in his head. My gut kept telling me something is still off... way off. Just couldn't get it figured out so I made an appt with our pediatrician Dr. Gerwe. I voiced my concern with him about his behavior's, his speech and hearing, bed wetting and headaches. These headaches and bed wetting were coming more frequent. We felt like his speech was not progressing, falling backward and being back to square one. Dr. Gerwe was concerned when I told him his headaches were coming on more at night. He stated that headaches should not come on that strong at night. Children should not have headaches that frequent and strong. He stated that was a red flag for him and he ordered the MRI... Finally!!! I had a doctor that was willing to listen to us instead of beating around the bush... so big props to Dr. Gerwe for ordering the MRI!!!!

Might I add that because of Brennan's speech and hearing issues, kids are mean. So mean that they call him stupid and even the word "retarded". Really??? Really??? This breaks my heart. To have my six year old son come off the bus and ask me what "retarded" was broke my heart. I asked Tyler why he wanted to know and he stated it was because kids were making fun of Brennan. It makes me angry... no kid deserves to be called names.... EVER!!!! 

We went and got the MRI done and it was the longest 48 hours of our lives. Waiting for answers... when Dr. Gerwe called with the results, he stated it definitely was not a tumor or cyst we were looking for but it was much worse than that.. Chiari malformation. I was totally in shock when he was explaining what it was.. basically in a nut shell his back of his brain is falling out of his head?? WHAT?? I was stunned. I never heard of it. He told me we would have to see a neurologist to explain everything and that the only way to fix this was surgery. Surgery.. on his brain? Really??? I think from then on everything was a blur and I feel like I am riding on auto pilot now.

So meeting with Dr.Geller and Dr, Kaulas  we got our answers. No wonder why his head hurts.. his speech and hearing are off. His brain stem and cerebellum are being pushed out of his skull. It is effecting everything since the cerebellum is the main part of your brain that controls a lot of the body. They pulled up his MRI scans and I can say I think my jaw hit the floor when we saw it. I really don't know how Brennan functions. Dr. Geller showed us how a normal brain should look like and compared it to Brennan's. There is no spinal fluid moving.. it is pretty much all blocked. We are still in shock with the results but FINALLY FINALLY relieved that we now know what is going on. It is not the news we were prepared for but we take one day at a time. I have ordered a copy of his MRI scans and will post what exactly we are looking at. We have been referred to neurosurgeon, Dr. Elbabaa and I am still waiting to hear back from his office. Hoping to schedule soon. Brennan also has been scheduled for an ABR test for his hearing. Checking to see if his cochlear nerve is damaged since it runs in the back of the brain being effected.

So there you have it... in a nut shell... how we came about this diagnosis. Not been an easy couple of years but as a mother.. I can say.. it was my gut.. the nagging feeling that something was off. Just had to keep digging until we got our answers.