Brock's year (and a little extra)...

https://www.youtube.com/watch?v=kNyrjC2ED70&feature=youtu.be[...]

This is how Brock's feet look the majority of the time- which obviously present problems with weight bearing and balance. Because of all this, he received a referral today to be fitted for a brace called an SMO. Hopefully this will begin to correct alignment and allow him to keep making steps forward in his progress to meet his developmental milestones.  We will wait for the orthopedist to call and see what they have to say, but our physical therapist is confident this is the route they will take. [...]

We are beginning to reflect on this crazy year as we plan a party to celebrate our sweet miracle. We got pictures done right when we got out of the hospital, and I can't think of a better way to book end this year by another photo session! Brad and I might look the same, but we (especially myself) feel like a totally different person. All of you can help us win a free photo session by logging into Facebook, and clicking below: https://www.facebook.com/LeahNicollePhotography/photos/a.170560956393549.35147.141545412628437/647911411991832/?type=1&theater[...]

About 3 weeks ago now, I was up around 6 am with Brock, and had recently been dared to do the ice bucket challenge. I thought it was as good a time as any to set up my camera. Little did I know, that video would be both a complete blessing and the cause of another little roller coaster in this journey.  I posted the video on social media, and not long after was contacted by a mom asking about Brocks mannerisms in the video. That, in turn, made me make a call into the neurology department. I explained his “eye blinking” and “arm flailing”, and was told it was most likely a seizure and his meds would be adjusted at his appointment the following week. No big deal. Two days later, I saw Brock do it again. I called neurology again, but this time, I also posted the video to a couple of facebook groups of families who are walking similar journeys. I immediately became aware that we had reasons to be majorly concerned. I contacted our pediatrician, but he was full for the day. After 3 hours of waiting for a call back from neurology, I started heading to the hospital. I was pulling into the parking lot when the nurse finally called back. I told her I was bringing Brock into the ER unless she found a way to let our neurologist see my video and then tell me we didn’t have reason to be more concerned. I mentioned several people saying it looked like IS. I got a call back not long after confirming my fear. We were told to check into the hospital the next morning for a 2-7 day hospital stay, and possibly life changing news. What is IS? It’s also called infantile spasms, or West Syndrome. It sounds harmless, but from what I have gathered, it’s anything but. It is considered one of the “catastrophic childhood epilepsies.” Brad and I held Brock down for 20 minutes while he screamed “mama” and the EEG probes were glued onto his head. We spent a little more than 24 hours hooked up to an EEG in a room that had cameras on him constantly. It was the closest thing to prison that I ever plan to get. Someone had to be with Brock at all times- both because he had cords that would wrap around his neck with his eagerness to explore and get around, and because it was our job to notify nurses of any seen seizure activity. At the end of 24 hours, we learned that Brock had a completely normal EEG. If you compared his EEG to another child his age without his medical history, you would not be able to distinguish them. Now, that does not mean Brock doesn’t have brain damage. We know he does. It does not mean he isn’t having seizures. We know he is. But, his seizures show no “pattern” and he doesn’t display hypsarrhythmia (chaotic brain waves). We were discharged shortly after with nothing but a medication adjustment- definitely the lesser of two evils. However, we also left the hospital with the word “epilepsy” added to his medical history- a reminder to me that we will have lifelong battles to fight because of this nasty germ. It seems silly to have such a reaction, but it has honestly been really hard for me. I see Brock and his progress, and I like to think he won’t have to fight so hard forever. I’d like to think we can really put all of this behind us. I easily get overwhelmed with what is before us. Like the fact that Brock had an MRI Friday and we have a surgical consult on Monday. Or the fact that the neurosurgeon that we fell in love with and thought would do Brock’s surgery if he needed it is on an 8 week leave of absence. Or that based on Brock’s last physical therapy evaluation, he has caught up enough that insurance no longer wants to pay for therapy. They are little things that equal big stresses in my life.  Please be praying for our appointment on Monday- and for peace about our decision. Also, pray for Brock’s health this fall. With or without the surgery, it is going to be very important to keep him healthy. I’m going to add a small, hopefully very kind reminder to everyone that if you aren’t feeling well, please stay home. A small cold for you can be a huge thing for a child (or adult) with a compromised immune system. A stomach bug for you means a few miserable days at home, but it’s an instant ER trip for us. I refuse to live my life in fear, or in a bubble (regardless of how tempting that can seem at times). I’ve learned more than anything in all this to enjoy and be thankful for the time we have together on this earth. And please, please, please don’t put your finger near my child’s mouth. He will try to chew on it, and you are not a chew toy! Plus, fingers are germy. [...]

I sit down at the desk in our room to type an update so often. Children occupied- most often sleeping- fingers tapping, and I can just never get the words out. It is still so incredibly difficult to put words to this journey. To explain how our life feels so normal and yet so abnormal all at the same time. Brock is honestly doing so well- undoubtedly better than we were told to expect. I still wonder what is/was realistic in doctors’ minds for his growth and development. But, I can read the statistics. 20% of babies with meningitis don’t make it, 50% of those that do survive go on to suffer significantly with vision, hearing, and have learning disabilities, 40% require a shunt. He is  so very happy and so easy going. We still see physical therapy, occupational therapy, and speech therapy often. We had let go of speech, and thoroughly enjoyed eating without someone watching every motion of his body, mouth, and tongue, but Brock has shown a need to pick back up therapists in that department. Brock has also been the lucky recipient of the stomach bug- twice…so that gives you an idea of what his immune system is still like. He also seems to have at least 1 cold a month, and we ended up in the ER with high fever and a double ear infection the only time we got enough guts to take a trip. He seems to catch everything and honestly, living in a bubble is not enticing to me, but blowing up at people who put their fingers in his mouth like a chew toy is. At his 6 month appointment, our pediatrician suggested seeing several additional specialists, but said nothing was pressing or would really alter his treatment, so I choose to steer clear of receiving any more potentially bad news. Fast forward almost three months, we are in the same position- so in the next three weeks we will be having another swallow study done, and will be going to a pediatric ophthalmologist and back to the audiologist. We will also see someone to make some foot splints (I don’t know what else to call them) that will make him stop curling his toes so that he will learn to stand up and balance. On top of all that, we go back to neurology, and then have another MRI sequence before seeing neurosurgery on September 12th. At his last head circumference check, Brock had jumped up onto another growth curve, so obviously we are more and more aware that the VP Shunt is quite possibly in Brock’s future. It’s funny (ok, not really) to hear them talk about a shunt like it’s the most minor procedure- it’s brain surgery, it’s another hospital stay, it’s anesthesia, and the word death is on the consent form. Obviously that risk is low- but so was him getting GBS meningitis at 11 days old.[...]

(this post was written a week ago- )

Today, Brock wants to introduce you to one of his friends. This is Jonathan. Jonathan is currently in ICU at Children's far from his home in Texarkana because he needed more care than they can give him. His aunt (legal guardian and caregiver and therefore called mom from here on out in this post) has a very tiny support group of other moms in the area whose children also have additional needs. We answer each others insurance questions, discuss what type of equipment is best, favorite doctors, and visit each other in the hospital. Jonathan's mom, Patricia, is in desperate need of support and encouragement. Taking care of Jonathan when they are home is a full time job, so she doesn't have a job outside of caring for him. On top of that, she doesn't have transportation and relies on nurses to get her to and from places. Disney world and hospitals have one serious thing in common- they are money traps! Balloons to make someone feel better are $5 in the gift shop and meals are outrageous. It's $6 to leave the parking garage to get food elsewhere unless you buy the $20 in/out parking pass for the week. Seriously people, it's nuts. ::end rant, back to Jonathan::[...]

We've started the phenobarbital wean- decreasing his dosing by very small increments over the next 4 months. Our next appointment with neurology isn't until August. We have an appointment with neurosurgery next week about the MRI Brock had done on Tuesday. Pray with us that Brock does not need a shunt![...]