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!

Here we go again.....

Well.. here we are at it again. We started another chapter to our Chiari journey last Thursday when went and visited with Dr. Frim, the Chiari Specialist in Chicago. The ride up there was llllooonnngggg and kind of boring until we hit the city limits. I have to admit.... I kind of got excited when we saw downtown in the distance until we took the turn to go to University of Chicago Hospital. All I have to say about the area is WOAH!!!!!  Entering the building from the parking garage was kind of intimidating. It wasn't Cardinal Glennon. It was a real hospital.. Doctor's walking around in white coats... adults walking everywhere.. RN's in groups talking and walking with patients... I felt like I was seriously in an episode of Grey's Anatomy!!!! (My favorite show!) There were hardly any tiny humans running around!!! We went and grabbed a bite to eat and walked around just to see the place.. yes.. I did get lost!!!! Went over and scoped out Comer's Children's Hospital just to see what it was like. It is a huge facility but very, very nice!

We got to the appointment a little earlier and expected to have a long wait. It wasn't that bad. They called Brennan's name and my stomach which was in knots already was turning even more. I really wanted to throw up. We met Ashley, who was Dr. Frim's resident. She was going over questions and answers with us... going over both of his MRI's and the findings. She did ask a lot of questions regarding Brennan and what was going on with his health now. Showed us what they did on his MRI and what should have been done in the beginning. After all the questions and answers, she brought in Dr. Frim. I have to say, we were both impressed with him. I liked him a lot. He never once talked over us with medical terminology. He talked to Brennan on his level. There was things I learned with Chiari and things we knew about already. I can call him the 'Chiari God"... the man is very knowledgeable!

So after the conversation, physical examination and further review of the MRI's, we are now scheduled for another brain surgery Nov 2nd. It will be a very extensive surgery. Given the information, they will be cauterizing part of the brain out that is herniating out of his skull, cutting out more bone in the back of the head, shaving down more of his C1 vertebrae and opening up his dura sac all the way. Given that information, I wanted to throw up more. Just hearing the word "surgery" made my head spin more. Poor Brennan was freaking out... the poor kid has been through enough this year! He will be in the ICU for a couple of days then moved to another room until he is discharged from the hospital. I will be staying with him until he is discharged. Being a ways away from home.. I will not be looking forward to the ride home after surgery!

I have been asked.. "How do you feel about this?".. "I don't know how you do it?"... "Aren't you scared?"... To be honest.. I am feeling a mix of emotions.. I went into this doctor appointment with anxiety.. having a new doctor tell us his opinion.. the things that need to be done to slow down the progress of this. I am angry because it is robbing him of being a "normal" boy. I am scared for the unknown of the future of both his Chiari and Ehlers Danlos Syndrome. I am happy we found a doctor that "gets it". I am nervous for the surgery itself. I am stressed out from everything that has happened and is about to happen. I know there has been some tears lately and I am sure there will be more tears as the surgery date gets closer. No child should ever have to deal with this amount of pain and no parent should ever have to watch their child in that much pain and struggle with the little things. I look at B and ask "why.. why him".. one of the most lovable kids I have met. He doesn't know a stranger and is always smiling and pushing through pain.

We ask that you continue to keep Brennan in prayers and thoughts. This has definitely been a long road for him. Nov 2nd...a new chapter begins....

Grab life by the horns and ride......

 Wow.. time has flown by! Looks like the last time we updated the blog was back in June and baseball season was in full swing for us! Now we are in the full swing of football and school is back in session! This summer was filled with doctors appts for Brennan. Seemed like we were at Cardinal Glennon every week in July if not twice a week. A lot has happened since the last time I blogged. July was a big month for Brennan. We met with Rheumatologist, Dr. Moore to discuss why Brennan was in so much pain. We always suspected Ehlers Danlos Syndrome (EDS). What is Ehlers Danlos Syndrome? Ehlers Danlos Syndrome is an inherited connective tissue disorder with different presentations that have been classified into several primary types. EDS is caused by a defect in the structure, production, or processing of collagen or proteins that interact with collagen, such as mutations in the COL5A or COL3A genes.The collagen in connective tissue helps tissues resist deformation. Collagen is an important contributor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen renders these structures more elastic. In some cases, the severity of the mutation can be life-threatening. EDS can have neuromuscular complications including ocular and ophthalmic complications. There is no cure for EDS, and treatment is supportive, including close monitoring of the digestive, excretory and particularly the cardiovascular systems. Occupational and physical therapy, bracing, and corrective surgery may help with the frequent injuries and pain that tend to develop in certain types of EDS, although extra caution and special practices are advised to prevent permanent damage. EDS is a chronic pain disease, with patients suffering daily. http://www.healthline.com/health/ehlers-danlos-syndrome#Overview1  Dr. Moore wanted further testing so we started the process. We had a lot of testing done, lots of bloodwork, echocardiogram and seeing an ophthalmologist.

Also during that time, we also had our follow up appointment for his 6 month check up from his Chiari surgery. He had his MRI done July 21 and also saw Dr. Elbabaa. We received the results that everything looked great. Surgery was working.. he had good flow around the brain! Yeah awesome news. I did voice concern on some things on his MRI but they pretty much told me not worry. I also voiced concern of his headaches coming back... speech stuttering again... pain throughout the body. Again.. he reassured us it was "residual" and that he will have the headaches and pains. It was not a flip of the switch.. it takes about a full year to recover from this surgery.

I ordered a copy of his MRI from July to have on hand and to see the images since they really didn't let us see them at the doctors office. When we loaded it we both were really shocked by what we saw. We started second guessing the images on the CD. We both felt like we needed to find a Chiari Specialist. Getting some advice from some friends of mine who also have Chiari and see a doctor in Chicago, we both felt like we needed a second opinion about Brennan. (Thank you Teresa and Donna)! I called Dr. Frim's office  in Chicago to see if he would give us a second opinion and they told us to send his MRI images and medical records. I was nervous sending all of this off...I now know we did the right thing.

August 28, 2015.. we had our follow-up visit with Dr. Moore to get the final results. The words... "yes.. it is definitely Ehlers Danlos Syndrome." Hearing those words were bittersweet. We knew it all along but just getting a doctor to hear us out. Since we narrowed it down out of the 6 different types, Dr. Moore stated Brennan has EDS type II.. Classical. Click here to read more about Classical EDS  http://www.ednf.org/classical-type Brennan has always complained pain throughout his body. His main pain is in his head, back, legs, knees and feet. Sometimes his arms but I truly think the kid always has pain. He does bruise very easy and his legs and arms are always full of bruises. He will start physical therapy to help strengthen his muscles... upper and lower extremities. Trying to figure out a way to get him to gain weight since he has lost 4lbs  We go back to Dr. Moore in March for a follow up to see how things are going.  

August 29, 2015.... Today I was not expecting a phone call from Dr. Frim's office. They have been reviewing his case since there was a lot. I received a phone call while I was at work regarding Brennan. Not the news we wanted to hear but after further review Dr. Frim has stated that Brennan's brain is slumping. WHAT????? To put into terms for someone to understand... his brain is sliding down more. His first surgery was not done correctly and that he needs to be fixed. More than likely his CSF fluid is being blocked again and that is why he is having more pain. The dura should have been opened up and that the herniation should be cauterized. SERIOUSLY... at that point I wanted to throw up and still do. So given the information we received.. we are making a trip to Chicago September 24th to meet with Dr. Frim at 1 pm. We are now facing another surgery to fix Brennan again.

The last 2 days have shown me that life is not fair but we have to keep going. I keep looking at Brennan and can't help but tear up and wonder why him.. why us.. why, why, why. Just not fair to any of us. Not fair that he has been through so much already and is about to go through more. This has been a long journey and it seems like this journey is gonna keep getting longer. To all the Chiarians that are on their journey... I feel for you all. To everyone that is following Brennan's journey, we thank you for taking the ride with us. I will definitely keep everyone updated!!!! 

B strong.. Brennan strong!

I can official say, I think this mama is about doctored out! These last few weeks I have been busy trying to figure out what the next step was after the genetic screening. After going rounds we are adding another doctor to the line up. We are scheduled to see a rheumatologist July 16. We are hoping to get more answers and maybe stronger meds to help with Brennan's pain.
                             

This was taken the other morning when he was attempting to eat breakfast. He was telling me how much his head and legs hurt. Its moments like this I really had a magic wand to take away the pain. The struggle is real. We have good days and bad days. I love it when we have good days with minimal pain. This pic just sums it up on the pain level that morning.

On a better note... we started selling t shirts for Brennan. Supporting him on on his journey with Chiari Malformation. 

The "B" is on the front of the shirt with the saying being on the back. I am pretty excited we already broke our goal! We will keep selling for the next couple of weeks. If anyone is interested in buying one, let me know! We thank Kellie Stormant for helping design and printing his shirts! !!

June 25, July 16 and July 21 are the next three major appointments coming up. These will hopefully give us more answers for Brennan. Possibly may even schedule another surgery depending on the outcome of the June 25th appointment. July 21 will be a huge one for us. This one is an MRI and a follow up to our neurosurgeon. They will be comparing his MRI from December to see how he is progressing from his surgery. I am hoping we also get good news with that too! Keeping my fingers crossed!

Brennan has had a few good weeks of speech now with Ms. Katelyn at the hosptial. She is definitely working her magic! Finally starting to hear some pronunciations of letters better. Brennan has been working hard on his "F" sounds. He is starting to work on his "D" sounds now. It's the little things that excite us!

Thanks to those that have been keeping Brennan in their prayers and thoughts. Still have a long road ahead of us! If you would to help Brennan out we also have a go fund me page set up. www.gofundme.com/brennensjourney. This will help with his medical bills and his therapy. We appreciate everyone that has helped Brennan on his journey!!!!

Pre-K graduation and test results... now we hit a brick wall

Welcome summer!! These last few weeks have flown by us! Last Friday Brennan graduated from Pre-K. I will admit this mama had tears. Tears of joy to see him standing up onstage. To know how far he has come and overcome some obstacles. We still have a long road ahead! We are so proud of him. Cant believe he will be a Kindergartner next year! 

                        

This past week has had a lot of up and downs. We did recieve the results of his genetic screening. What we thought was awesome news that everything was fine.. everything negative for all major medical they were looking for turned into not so good news the next morning. I got a phone call from the pediatrician that he also had his results. I told him we knew from the genetics counselor and everything was negative.. awesome!! Well not so much. The one test that was part of the Chiari puzzle..  they didn't even do it!!! That made my stomach turn. Livid  was what I was feeling. So now we have hit a brick wall. I have made phone calls Friday and hoping to hear something this next week what the next step is. The one test that was crucial we still do not have answers for. So until then... we wait!  The other part of the bad news was that our insurance is denying Brennan's speech therapy at the hosptial. It has been a back and forth deal with us and insurance. Long story short... I will be making an appeal. For those that know Brennan know he desperately needs this. Finally got him someone that is awesome and working with him one on one. For right now he goes one day a week since we have to pay until we get through the appeal. I don't want him to lose his spot! This mama has been a little stressed out this week! Hoping things will start to turn around for him and us. :)

The next big appointment is June 25 at the Craniofacial Institute at Cardinal Glennon. We meet with the plastic surgeon team to see if he truely has a sub mucous cleft palate. This will be a long appointment!

We would like to thank everyone for the continued thoughts and prayers. We still have a long road ahead. Also thank you to those that have helped with donating to Brennan's Go Fund Me page. If you would like to help Brennan out with his journey his go fund me page is www.gofundme.com/brennensjourney. This will help with his medical bills and therapy bills he has now and in the future! 

Big week... now we wait! "B" strong

Hello All! Well.. we survived the tonsillectomy. They are gone and another chapter written in the book. We are hoping to see some improvement in the next month or so. Brennan did great up until bed time Monday night. All I can say is coffee was my best friend Tuesday morning. He was up most of the night with so much pain, I was tempted to go to the ER to get control of it. Tylenol was not touching it. He has struggled to eat and drink this past week. We really have been pushing him to drink and eat popsicles but he is being stubborn. These past couple night have had some rough patches. He has been waking up crying from pain. Not just pain from his throat but his whole body. Weather changing and mixture of allergies and Chiari also. I am dragging from lack of sleep but I still keep plugging away. That is what us mom's do! I am hoping as the week progresses he will start to eat and drink more. Sleep would be great too!!!

Thursday was a big day for us. For some people that think why is Thursday considered big... well... it was the blood draw for his genetic screening. This is a huge. Some people don't understand the circumstances of what has been going on with Brennan. This is what we have been waiting for.... answers. Answers to the last 5 years of his life. All the answers are sitting in 2 vials of blood at the lab waiting to be processed. I am not going to lie.. I am nervous. I have been nervous since they discussed with us at the meeting that they were doing run the tests. This is not your average blood test. This test is a 3 week wait... going down to the DNA, chromosomes, genes.. etc. There are things that could come back that we may have never discussed. Things that might freak us out. Things we didn't want to know but we need to know. Things that we did discussed and it does show it being positive. I have been thinking the last couple day of  what could come back. All the what if's and could be questions starting running through my mind. I do know that whatever comes back from those tests, Chris and I are going to try to be prepared. We have to stay strong! "B" strong!

We feel like we are on the right track now. A few years ago we didn't know what to do or who to talk to. Now we have so many doctors I can't keep track. I have a handy dandy notebook.. It was the mommy gut that gave me the push. It is just knowing in a few short weeks we will finally have the answers. We will finally have a game plan. No more what if's or could it be. It is the real deal.

This past week, I got asked a lot of  "I don't know how you do it or Chris do it"... "how do you handle this". My answer.. we just do. I work full time, Chris works full time. We have 3 kids. We juggle our schedules around a lot. We keep going. We communicate. We always make sure we both can be there for Brennan's appointments so that we both can hear what is going on. We both try to attend our children's activities together. It is important to both of us we do this for them. There are times we may be running different directions but it is a rare occasion. Since we got the diagnosis for Brennan we had to make some adjustments but we try not to make it a big deal. I look at Brennan and wish he could be able to play baseball or football and be normal. There are times I have come home and have lost it wishing so bad this was a bad dream. I have cried many of times over this. It can be stressful and it is a lot to take in, but we deal. As a mom, you want a happy healthy kid. A kid that doesn't ever have any issues and can do normal boy stuff. It breaks my heart looking at Brennan. Knowing he looks normal outside but the pain on the inside is there.

We will continue to stay strong. No matter the outcome of the results we will continue with what we are doing with maybe some more adjustments along the way. This whole situation has been a learning and teaching experience. We want to make more people aware of what Chiari is. It may even help another family/child out that is having the issues like what Brennan has been going through. The next couple big appointments Brennan coming up are June 25 we see Dr. Plikiatis at the Cranofacial Institute to look at his mouth structure for a possible sub mucous cleft palate. July 21 we have his 6 month check from surgery with Dr. Elbabaa and his MRI. In October we see Dr. Geller for another follow up.  Next Tuesday he starts speech therapy at the hospital.

 

                                                                            

                                         

Lets rock and roll!

Its the night before Brennan's tonsilectomy. I guess I should be used to the whole hosptial routine. Just seems like it is becoming the norm here. Seem like this will be a walk in the park surgery compared to his brain surgery in January. I pray it all goes smooth and no complications.  I will be updating everyone throughout the day.

Seems like another chapter is being written in our book. I think I seriously need to write a book and call it "Something about Brennan....". I never really thought one medical diagnosis would lead to so much more! Thursday will also begin a huge chapter in our lives. The genetic bloodwork begins. We will finally have all the answers! Once we get the results we will finally have a game plan in place. I am acutally getting nervous about this! 

We would like to thank everyone for their continued prayers and support for Brennan. We have set up a go fund me account for him to help with medical bills and therapy he will need. If you would like to help Brennan on his journey you can donate to www.gofundme.com/brennensjourney. We thank those who have donated to help Brennan out. 

Finally gonna have answers!

Hello all! Today we got exciting news! Brennan's bloodwork for the genetic screening was approved! This is a huge step for him and us. Finally gonna have a majority of the answers we have been looking for. He will start the process May 14th. The nurse told us that it may take 3-6 weeks. They will call me the first week of June with the results...hopefully!

Doctors appointments, tests... oh my!!!

It's getting to be that time again! Spring is upon us and we have hit the busy point in this household!!! Bring on baseball! We have been busy with doctor appointments and the start of genetic testing. Here is the update on Brennan. On May 11, Brennan will have his tonsils removed. We are hoping this will help improve his speech and maybe his appetite. They are also a 3+ in size and the doctor's that we have seen all have said they would not be surprised if he had sleep apnea. Our neurologist said he was not about to put him under the sleep apnea test. He has been through enough already so... out they come.

We have started the process of the genetic screening. Lots of information that was thrown at us all in one day. As of right now, Brennan had an x-ray on his back since the question of scoliosis was brought up. We had one done at our hospital. The first radiologist said his back looked absolutely fine.. negative on anything. Our pediatrician wanted a second opinion and the second radiologist stated there was a slight curvature in his spine. With it being considered less than 5% curved, they do not consider it scoliosis but have noted the curvature and will keep an observation on it. Will do a follow up in 6 months and do another measurement. We asked about Brennan and Ehlers-Danlos Syndrome since he was showing signs ans symptoms. She stated she believed he has something called benign joint hypermobility syndrome. Benign joint hypermobility syndrome (BJHS) is an inherited connective tissue disorder in which joints can move beyond their normal range with little effort. All I can say is I disagree with her and so does our pediatrician. I told the counselor I want a second opinion on this. She stated that with the blood work they are ordering for him, they are wanting to see the numbers and the diagnosis just may change. I am hoping for a straight answer on this. 

As the meeting went on, Dr. Kirby was really listening to Brennan talk. People that know Brennan know he has a major speech issue. She asked a bunch of questions regarding when Brennan was a baby. She asked if he vomited a lot and if it was through his nose. Both of those questions were a yes. She also noted how nasally he sounded when he spoke. Chris and I were surprised when she told us she has a major concern that  he has a submucous cleft palate. A submucous cleft palate is one that is "hidden" beneath the lining of the roof of the mouth. The lining (mucous membrane) may make it difficult to identify the cleft, as it is not visible, but detectable by careful manual examination. This type of cleft may appear in the soft palate and be lacking in muscular tissue, with the area's muscles pulling perpendicular to their normal positions. . This produces functional difficulties for a person including speech problems, feeding difficulties or middle ear dysfunction. DING DING DING...Chris and I never heard of this but reading on this, Brennan does fit the characteristics. So she sent over a referral for a cleft palate specialist to look at him.

We will also be having some major blood work done on him that will answer a lot of questions for us. It may not be the ones we want to hear but I think finally we will know everything and finally start moving forward with a game plan. We will head to Cardinal Glennon to have the blood work done and will wait for results. They usually take anywhere from 2 to 6 weeks to get. I called and made an appointment at the CG Cleft Craniofacial Center. I can officially say I am adding 3 more doctors to our list. June 25 we will see Dr. Plikaitis, the plastic surgeon/cleft palate specialist that will be over seeing this. She will be doing an exam on him along with pictures to see if he truly has this. We will also see an audiologist, ENT and a speech pathologist for some other testing. This will be a 4 hour process and we should have a definite answer of yes or no of the cleft palate. If he does indeed have this, he will have to have surgery to repair. Great.. another surgery... it will be a major answer and will help him but I dread him having another surgery.

We had a speech evaluation done at the hospital. He will be starting there and will be attending through out the summer to help keep up with his speech so we do not get behind. We feel that he may make great progress being in a one on one setting with the speech therapist.

July 21 we have his MRI scheduled for his 6 month follow up since his surgery. I am anxious to see the MRI and the comparison of the one they did in Dec to the one that will be done in July. We also are scheduled to see Dr. Elbabaa that day too! I can't remember what day but I know we are seeing the neurologist somewhere.. to many doctors and appointments.... trying to keep everything straight! LOL

I feel like we are finally getting somewhere. What started out as a new chapter of Chiari Malformation has opened up to a whole new book! We have a long road ahead of us still. Still getting answers. We have set up a go fund me account for Brennan. If you would like to help him out you can check out his page at www.gofundme.com/brennensjourney. We very much appreciate those that have donated to help Brennan with his medical bills, now and in the future and the therapies he will be going through. We also appreciate all the prayers and thoughts for him and our family. It means a lot to us!

Just another week...

Another week come and gone. Friday marked 10 weeks post op. This week brought in storms and warm weather and with that came more headaches and pain. Just the change in weather affects him greatly. Tylenol has been flowing through like water! Aside from the pain, the beginning of the week brought nice weather and we enjoyed being outside. I know one thing.. where there is dirt and rocks.. you will find Brennan! He is happy when he plays with his tractors and dump trucks.

Right now Chris and I are still discussing when to make the appointment to get his tonsils taken out. It has been recommended by 3 doctors to get them out. We are anticipating April 22 when we start the genetics screening. I believe we will finally have all the answers we are looking for. Whatever is thrown our way we will deal with it. We are still waiting to hear back from the hosptial about his speech therapy. Hoping to hear something soon!

If anybody is interested... there is a go fund me account opened up for Brennan. It is set up to help off set some of his medical bills and to help raise awareness of Chiari Malformation.  The link is www.gofundme.com/brennensjourney. Any extra we make will be sent to www.asap.org

We thank everyone for their continued prayers and thoughts for Brennan.

Neurologist visit 3-27-14

Wow... how time does fly! Time gets by you! Brennan had his follow up appt with Dr. Geller from his surgery on 3-27. That was also marking his 9 week post op. Hard to believe! His scar looks good but still itches and at times still hurts him.

During his visit Dr. Geller did a thorough exam on him. After further examination,  questions and answers, Brennan is showing signs and symptoms of Ehlers-Danlos syndrome. He stated because he is not a geneticist he can not be certian and directly make the diagnosis but he definitely has what you would see in EDS hypermobility.  What is EDS? Ehlers-Danlos syndrome (EDS) is an inherited condition that affects the connective tissues in the body. Connective tissue is responsible for supporting and structuring the skin, blood vessels, bones, and organs. It is made up of cells, fibrous material, and a protein called collagen. Ehlers-Danlos syndrome is caused by a defect in collagen production. This condition is caused by a group of genetic disorders. 

Symptoms of hypermobility EDS are:

• loose joints
• easy bruising
• muscle pain
• muscle fatigue
• chronic degenerative joint disease
• premature osteoarthritis
• chronic pain
• heart valve problems
• skin does not heal correctly

There is a vascular EDS but we will not know anything about that or any other issues until the genetic screening is done. Brennan has a few other symptoms that goes along with the hypermobility EDS. Also during our conversation he stated that looking at Chris and I he thinks that I may be the "carrier" of this because of my features and characteristics.  Yeah... this had me scared and thinking!

This is an underlying condition of Chiari. There is no cure.. just like Chiari. We also got a referral to start speech therapy at the hosptial. We asked Dr. Geller about some of the the other issues we have seen with Brennan. He stated they are all related to Chiari. We will have to deal with it. May not be easy but we will find a way. We go back in October for another 6 month check. I love how Dr. Geller is caring and understanding. He is staying on top of this.

April 22 we start the genetics screening. We will know for sure more detail of what is going on with Brennan. It will take 6-8 weeks before we get the results of the tests. July 21 he is scheduled for his MRI on his head, neck and full spine. They will compare his last MRI to this one. As for now.. we wait for the screening and just deal with whatever is thrown at us. Now that spring is here... we will be busy with Ty playing baseball. Poor B... he cant't play but he sure will be cheering on his big brother! 

Waiting game!!!

Wow! We have been so busy with lots of things I have not had time to blog! We finally got our genetic screening packet! Took me a couple of days to fill it out but it is now sent back to Cardinal Glennon and now we wait for our call for an appointment! Hoping to find out some more information about Brennan and if he does have any other underlying conditions related to Chiari. As for Brennan.. he is doing good. We have our good days and bad days with him. Last couple of days have been rough with him. His head still hurts along with his back. I was hoping his apppetite would change but so far nothing. I think the weather has been pretty rough on him. We continue to montior him and note changes in him. Thanks to everyone that keeps the prayers and thoughts coming our way! We appreciate them! 

Here is a pic from his 4 week post op. I think his scar looks good and healing well!

Check up

Hello everyone! Friday, February 13th was Brennans check-up from his surgery. The appt went well and they are very happy with how well the incision is healing!  During the visit they had him do a few neurological tests and checked him out. He has been complaining of his head hurting more and his lower back also. Anne, Dr. Elbabaa's nurse practitioner stated that if his back continued to hurt the next couple weeks then we would have a lower lumber MRI done. He is scheduled for a follow up MRI in July and another visit with Elbabaa too. We are just waiting on the paperwork to proceed with genetics testing to see if there are other underlying conditions with him. We will continue to monitor his Chiari and note any changes to the doctor.

Here you can see a progression of how well his incision is healing!

Busy! Busy!!

Wow! Been a while since we have made an update! Been trying to get back into the routine of things and adding a few doctor appts in between! Last Thursday we did a follow-up with Dr. Papazian to address the tube issue in his ears. During his ABR the audiologist told us his tubes were clogged and we needed to have them looked at. Needless to say while seeing Dr. Papazian he addressed that both tubes have fallen out but Brennan has alot of fluid agian in his ears. So we are scheduled for a hearing test with Dr.Lane in Monday and with those results we move to plan B which is still in the works! Friday marked two weeks since hia decompression surgery. Brennan is healing very well!  Dr. Elbabaa did an amazing job!

This week we have 3 appts for Brennan! Monday is with the ENT/Audiologist... Tuesday we see Dr. Gerwe for his 5 year check and follow up since his surgery and Friday we go back to Cardinal Glennon for  his follow-up since his surgery and talk about the next phase of dealig with Chiari! Busy! Busy!!

 In between all of this.. we did manage to celebrate his birthday!! 

Day 8 Post Op

Day 8 of post-op.... today was a good day! B had some visitors today!  Aunt Tracy, Uncle Kevin and his cousins came to visit. We also celebrated his birthday with them. They brought a yummy cake! :) Today he acutally got dressed in clothes and was up moving or should I say running around more. He knows his limits and knows what he can tolerate. We only have had pain meds 3 times today.. that is awesome! His head is starting to heal so it is itching more. Still have to use the special shampoo the doctor gave us. I know I am a day behind posting about being a week out from surgery so below are pics that mark post op day 7

His incision looks good!!!

Day 6 Post Op

Day 6 of post-op. Still trying to control his pain. Been working on getting him to move his neck more from side to side. His head favors one side. Don't want it so stiff.  February 13 we go back to the doctor for a check up. Below are some pics from his surgery. I forgot to post some of these!

Home.. so nice!!

2 full days of being home... so nice! We have been settling in with Brennan and making him comfortable as possible. He has done very well. Just trying to keep up with the pain meds and trying to get him to eat and drink more. His favorite thing to do right now is play with play dough and get on the computer to play Starfall. When his head starts to hurt he lays on the couch with Ben and Bailey.. his stuffed dogs. He also enjoys cuddling with Chris and myself. Sometimes he even will fit in a cuddle with his brother! :)  February 13 is the follow-up doctor appt. from his surgery. He will have a follow-up MRI sometime in the next couple months to make sure everything is good from surgery. We also have appt. to see our neurologist, Dr. Geller in March. Tomorrow is a big day for our champ! He turns the big 5! Crazy how time flies!!! :)

Going home!!!!

Hello all! Today is a great day! Brennan is coming home today!!!! Dr Lebowitz came in earlier to do an assessment and also took the dressing off the incision. It looks really good! He said he gave him the all clear from his end but we had to see what Dr. Elbabaa's assessment would be. After eating a good breakfast and taking a nap, Dr. Elbabaa came in and said he has done amazingly well and has taken this like a champ! Such a trooper through all of this! So.. discharge papers have been signed.. instructions given and should be leaving soon as Chris gets to the hosptial!!! :) We will be following up with Dr. Elbabaa in 2 weeks so he can check his incision. In 3 months he will have another MRI to check on the area of the brain that was decompressed. Also we will also be following up with Dr. Geller, our neurologist.

First day post-op

Today was our first day post-op. It has been a long day. We had some rough patches throughout the night. I think I was up every hour and half. Nurses coming in and out for vitals and meds. 4:15 am they came to get B for a CT scan to make sure there was no swelling or bleeding in the brain. Brought him back and slept for a little longer. Dr. Lebowitz came in to check B and stated everything looked good on the CT scan.. I was relieved of that news. Ordered more pain meds and told us 2 goals for today... get him out of bed to walk and he had to poop. Well.. it didn't take long for him to say the magic words.. I have to poop. Never been excited for poop! :) We could check that off our list as accomplished! He did get out of bed to walk and once that started, he couldn't stop! We have a window on our floor that faces towards the arch and he was so excited to see that! Dr. Elbabaa came in to do his assessment and was very pleased with Brennan's progress. He is rocking this like a rock star! He set some goals for Brennan also and once agian we have accomplished most of them. He even stated there was a chance we could possibly go home tomorrow afternoon! We also had a visit with Aunt Mamby and Uncle Brian today... all I have to say is thanks for the whoopie cushion! :)  Physical therapy and occupational therapy came in to assess and once agian, Brennan is doing so good he will not need to continue after we leave the hosptial. We will just have the excercises they send home with us. As the day went on, he walked alot more around the hallways and in his room. Took a little nap in between everything. Tonight as I write... we have been coloring with the markers and coloring book that Aunt Tracy, Uncle Kevin and his cousins gave him. He loves the magic markers that only show up on special paper from Crayola and this mama loves those too! :) Tomorrow I am hoping that when Dr. Elbabaa comes in to assess that we hear somewhere in a sentence we are going home! I am not pushing anything with B but he is definitely doing better than what I thought he would. He has been a trooper through all of this!

Rough night....

Well.. we made it through the first night! We hit some rough patches. He had alot of pain so morphine was given and seemed to help relax him. His vitals have been very good. Went down for his CT scan already this morning. Dr. Lebowitz was in already and checked B out. He said his scan looked good. Ordered more pain meds for today. Dr. Elbabaa will be in later to do an assessment. Goals for today.. walk down the hallway and poop! :)

Update....pain meds have kicked in!

Just an update... Brennan is doing well. Been drinking and taking small bites of food. Dr. Elbabaa was in to check on him and said he looked good. He is scheduled for a CT scan tomorrow. Pain meds have been given and he is totally relaxed.

Hallelujah... Surgery is over!

Hello everyone!  Today has been a rough morning. Lots of emotions running in our minds. Hardest part was saying good bye to Brennan. Watching them roll Brennan down the hallway to surgery broke my heart. It has been a long couple hours but I am happy to report that Brennan's surgery went well. He is out of surgery and will be in recovery. Dr. Elbabaa explained  to us what he did. He did a subocciptal crainiectomy with a C1 laminectomy and a partial split duraplasty.  He stated that he had a severe case of Chiari and it could have shortened his life expectancy or could have been fatal. he had tons of pressure in his head. We are relieved that the surgery is done and now we can breath. We are waiting to see him in recovery. We appreciate everyone's thoughts and prayers more than you know. We will continue to update through the day and the rest of the hospital time.

Erika

Countdown is on....

Hello all! Well.. we are on countdown until Brennan's surgery. I have been busy making out my list for the hospital this past week. Making sure we have everything.. especially when you have to pack for a new baby!!! Brennan has been asking more questions about his surgery. Emotions are running wild and anxiety has started with this mama!! I will be updating the blog next Friday throughout his surgery along with facebook and texting those on my list. We appreciate all the prayers and thoughts we have recieved and continue to recieve.

Surgery date set!

Today we met with Dr. Elbabaa, the neurosurgeon. I have to say I was impressed with him and we feel that Brennan is in great hands! Not a person I thought we would be talking to in my lifetime! He went over Brennan's case and felt that surgery is definitely necessary to help Brennan. So with that being said... January 23rd is the set date for his surgery. We have to be at Cardinal at 6 am with a surgery start time of 7:30. He will have what is called a posterior fossa decompression surgery. Click on the link to see details about the surgery. http://www.mayfieldchiaricenter.com/chiari_surgery.php
He will be in the hospital 2-3days at the most and missing 2 weeks of school. Even though it seems so far away it will be here before we know it!

Waiting game...

Just giving a little bit of an update on Brennan... January 6th we see the neurosurgeon at Cardinal Glennon. I think the waiting is the worst part right now. We are ready to get this over with and move on. As we know there is no cure for Chiari, surgery may help. We pray it works on Brennan and we take baby steps forward to make life normal for him. He still has the frequent headaches and starting to stutter a little more. As we wait.. we have had some fun trying to raise awareness for Chiari.

Chris started making bracelets to help raise awareness of Chiari. He has done an awesome job. It is important to both of us  to help raise awareness.