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.

Home is where the heart is.....

It has been a crazy week so far! I really haven't had time blog about his 2nd surgery! We stayed busy at the hospital most of the time. Therapy... therapy.. therapy! Physical therapy had him a couple times a day and so did occupational therapy. We did get rest sometime in between but then the famous "toy room" was the happening place. They also had art therapy and music therapy. Brennan did paint alot. Sue, our art therapy teacher told him to paint how he felt. He painted a painting almost every morning. I think it helped him. I usually had 45 minutes to myself thanks to his Child Life buddy. I usually would take a walk around the hosptial or walk to other buildings outside to get fresh air. I would always get my coffee too!! :) We were on a pretty good schedule between meds, IV flushings, doctors coming in and therapy. In between we snuck in a movie to watch. The Friday Chris and Ty came up we were working Brennan hard to meet his requirements to go home on Sunday. We came back up from the toy room and the doctor was in and said even though Brennan had not met all the requirements, they felt that it was best he would be able to accomplish them at home. We heard those sweet words.. Brennan would be released one day early! I think I did do a happy dance! That Saturday morning I couldn't be happier to get out of the hosptial room and into my car to go home. We will miss seeing our nurses we had on a daily and nightly basis. Brennan got attached to a couple of them but there was one, Danielle, our night nurse he just loved. She was just amazing with him! His heart was broken when it was her last night to work. He made her a picture to hang in her locker. Before we left Chicago, I did get my Dunkin Donuts (thanks Nan for the gift card)! The ride home was long. Just trying to keep Brennan comfortable was the key. We made it home and got Brennan home and made him a comfy spot on the couch. Chris went and got his meds filled and let me tell you it is a chore keeping up with them!!! We have a chartnwe have been keeping to keep up with the times!;He has been getting up more and more off the couch but when he hurts, he is right back on the couch. We started our therapies back up at the hospital. Trying to jump back into things! He has restrictions when he does go back to school and at home. Monday we had his dressings taken off. I felt bad because the poor kid screamed from the tape being taken off his head.  He is missing some hair on his head but it will grow back. He has spiked a low grade fever and we have been watching that. The doctor has ordered antibiotics and wants us to put Neosporin  on his incisions because he does not like the redness on the bottom of his big incision. Also blood work is ordered. Thanks to everyone that has kept Brennan in thoughts and prayers. Also for the text messages and phone calls. We appreciate it very much!

2nd surgery and the things you learn......

Nov 2nd... the new chapter began. Surgery was long...way longer than the first. Dr. Frim came out and talked to us afterwards. During the procedure he explained that there was more work than he anticipated. He did look exhausted when he was talking to us. He also explained that there was some obsticles in his head with different veins he was trying to avoid. He did bleed alot and required a blood transfusion. I think my heart stopped for a few after he said that. It was a good thing we signed for him to get blood if he needed it. He walked us up to the ICU where Brennan was. Seeing him for the first time was a relief but at the same time my heart broke seeing him the way he was. Lot more tubes and wires coming out of him than the last time. He was more swollen in the face which was to be expected. We did have a rough first night. Having a catheter in is not fun and for a child it makes it 10 times worse. He was agitated and by 2 am he was in pain not only from his head but his cath. They decided to take it out. He was better after that and finally settled down about 3:45. In between him feeling like poo.. we had the helicopter pad by us and they kept coming in and out. Just being on the ICU floor freaked me out. None of the rooms had bathrooms in them so we had to walk down the hallway to use the bathroom. Every room you had to walk by there was a child fighting. Each child had a story. Lot of gowning and facial masks going into some ofnthe rooms. Some were in isolation. My heart broke for those families.Tubes coming out of every part of their body. Lots of machines and beeping noises going on. My heart broke for those families. We were one of the lucky ones that didn't have to experience our child on breathing machine. It was depressing! At one point there was a baby that had coded next to us and I was freaked out. Doctor's and nurses flying every which way. Not something I ever want to experience agian. 2nd day was ok. Breakfast was the only part he ate good at. Lunch and dinner were horrible. Finally had 3 of the 7 IV's taken out. The Neuro team came in talked to us. They have set goals for him to reach before we leave. Lot of work to do! Physical and occupational therapy will be in to assess him. They said it will most likely kick his butt. We were moved out of ICU onto the neuro therapy unit. It is good for him but he already misses nurse Kelly. He got pretty attached to her lol. She was amazing! I do have to day the care he has had here has been amazing. Since we have been moved out of ICU they got him out of bed and sat him in the chair for a while. He started spiking a fever so they decided to move him back into bed. His fever has been up and down. Trying to keep controlled with meds. He has become more agitated. We shall see what the next few days bring. Lot of work to do before he can be discharged! To make time pass child life has been in. They have been awesome! He has attempted to color and paint. We didn't get very far with that since he started to have pain and fell asleep. The hospital also has movies that we can watch. I can't tell you how many times we have watched Frozen, Lego movie, Despicable Me and Spider Man. I hear "Let It Go" when I do try to get some sleep. We shall see what the next few days hold.

24 hours and counting

24 hours and counting... this is what we have left until Brennan's next surgery. It has been an emotional day for me. Saying goodbye to Ty and Reagyn had gotten the best of me. I have never been away that long from my kids. I know they are getting well taken care of! Huge thank you to my mama and Uncle Mark for helping take care of them! This road trip was long... and boring! Brennan decided to keep us entertained on the way!
         

Some pics from our road trip. He fell asleep with the fry box in his mouth. Before he fell asleep he decided that he needed to play with Kool Aid sqeeze bottles.... never a dull moment! We are at the Ronald McDonald House now. Grandma and Grandpa Curry are here too. That made Brennan happy to see them. This place is a pretty amazing place! Ate dinner that was made by a group of girls that were volunteering from a culinary college conference. It was pretty good!!! Finally settling down to watch some Packer football!!! My nerves are starting to get the best of me. I am more emotional and nervous about this surgery. It is a more extensive and a lot longer than the first. I never thought a Chiari Malformation diagnosis would change our lives. Then being diagnosed  in August with Ehlers Danlos Syndrome has definitely changed our lives.  No child should ever have to suffer. No parent should have to watch their child suffer. So much has happened since his first surgery. I am praying this surgery will help slow down the progression of his Chiari. Tonight I go to bed emotional... still. Hugging Brennan tighter. I will keep everyone updated throughout the day and through out his hospital stay. Keep Brennan in your thoughts and prayers tomorrow morning. Tomorrow.. a new chapter starts.... 

I'd you would like to help

For those who have been following Brennan's Journey.. we also have a go fund me page set up to help with medical expenses. If you would like to help Brennan out the link is www.gofundme.com/brennensjourney
We thank those that have donated to help Brennan out!