But that wasn’t my plan…

63367_10150259495140492_6409662_n5 years ago, September 17, 2010 – Ryan had the first of 3 brain surgeries to date – his Chiari surgery. The surgery wasn’t scheduled on 5 years and 1 day ago but it happened.

Ryan was 2 weeks away from turning 2. He wasn’t walking. He wasn’t even crawling. He wasn’t having seizures either.

Seizures started 4 days after this surgery. Seizures weren’t in our plan for Ryan – but it happened.

Blood work for a diagnosis wasn’t schedule to happen – but it did during this hospitalization just so insurance would cover it.

4 months later, January 10, 2011 – Ryan was diagnosed with a Chromosome 18 abnormality. That wasn’t planned either.

wpid-wp-1442604022419.jpegI’m in shock and awe when all of this is written in front of me. All of these things – they weren’t in MY plan for my child. It always happens to someone else, right? You always know another person who has a child who needs brain surgery, has a tough to deal with diagnosis. It’s never in OUR plan to have a child who needs surgery…especially on their brain! They’re not in any mama’s heart or plan for our own babes. But I’m reminded God puts these things into people’s lives for a reason.

Ryan’s taught me how to fight when I didn’t know how to…let me rephrase that – when I didn’t realize I could! When I was in the deepest darkest hole of my life – I was still fighting for Ryan (and Britney!). I fought with everything I had – because they were counting on me, their mama, to not give up on them. I fought and still fight for answers. I fight with kindness and comfort when people stare or say hurtful things. I fight by keeping my sharp tongue in my mouth when I really want to say something hurtful back but shouldn’t – so I just smile. I fight with my checkbook and finances. I fight for the insurance company to pay for medical needs. I fight by appealing insurance decisions beyond my control. I struggle with the seizures – and my thought process on if it’s the medications or Ryan’s brain and just the way God planned it for us. I fight for medication changes when I see changes and side effects in Ryan and my mama heart just breaks. I fight with my husband when I don’t mean to or want to but I’m so frustrated and exhausted I can’t help it. I argue with my teenage daughter about petty silly teenager stuff – and I’m reminding myself over and over – after the pettiness – that ‘I’m the mom’ and I shouldn’t act like I’m 13 again like this.  And none of these fights were in MY plan.

wpid-img_3119.jpgBut God’s plan for me (and Ryan) is bigger. He’s taught me that the seizures and Ryan’s diagnosis don’t make him who he is. Ryan’s a 6 year old boy, about to be 7 years old in 2 weeks. He’s in 1st grade at an amazing school surrounded by people who love him. He loves to get reactions from his family – making them laugh (and let me tell you – Ryan’s a comedian!!) or wanting them to make him laugh on a daily basis. He loves being outside or playing with water. Ryan loves blowing bubbles and listening to music and has some kick ass dance moves. He loves being loud and silly and running around playing. He loves his therapists and I thank God for those ladies because without them, I wouldn’t be able to see more of who Ryan is.

Ryan’s chromosomes and brain were all made different and he thinks and acts different than anyone else I know. The stories he has stored in his mind have GOT to be amazing…and I’m ok with not hearing them for now. I’m learning more and more to be flexible and accepting what’s in front of me. I don’t know that my plan would have worked out as good as God’s has. What I do know is I’m super excited to see where He brings us in 5 more years!

July ’15 seizures

Two weeks ago today, we were at OT when she asked when the extra right eye blinking started. I watched closer and then started noticing it myself. At home, it was then that it was more noticeable. It would happen most often in the morning. A week ago, at OT, I took video of it and sent it to the neurologist. That Friday, I called and talked to the nurse on what the doc wanted to do about it. Start another med for 2 days, a very small dose (.25ml) – see if the extra blinking/twitching goes away and call in Sunday if it continues.

By Saturday afternoon/evening, Ryan was walking around like a little old drunken man. The Neuro on call was phoned where he said asked many questions. The blinking/twitching had gone away for the most part… He said to update if its worse, in the morning.

Sunday morning, Ryan crawled into bed with me and the blinking/twitching was back, even worse. I again paged the on call Neuro and he said to come into the ER where we would be on the expectant list and probably admitted right away for LTM (long term monitoring).

Arriving at the ER, the parking lot and waiting room were almost empty. We were seen immediately, blood was taken, and Ryan was monitored by nurses and docs in the ER until a room was ready on the EMU floor. A new unit. Brand new wing. New gowns, beds, high chair, couches, chairs, TVs. New. New. New. All of that was great but it reminded me so much of the PICU when Ryan had his brain surgeries…

He was hooked up to the EEG leads and we were starting to settle into the routine of EMU living yet, again. In my head, I was on autopilot. Press the button for any seizure activity. Press the call light if you need a nurse. Keep Ryan safe and settled so he can be relaxed and peaceful. Keep him busy so he doesn’t get cranky. Cranky boy equals an even crankier mommy. The good Ryan appropriate toys and books from the playroom made it into our room and he was set!

image

With no nap on Sunday, he was cranky when we didn’t have any visitors. Aunt Beth made it up almost immediately, which I am so grateful for! We are so blessed to have her on our journey…walking and doing this special needs life without her wouldn’t be the same.

Ryan experienced lots of twitching Sunday afternoon, which we pushed the button for several times (30 times? 40 maybe?). The doc reviewed the EEG and couldn’t corelate anything specific…

Sunday night Ryan was asleep by 1030pm waking Monday morning really early (6am in a hospital is too early, people!!). We relaxed (and fell back to sleep) in Ryans bed until 815am when I woke up to his right cheek/eye twitching and lip smacking. After pressing the button, I just knew it had to show SOMETHING on the EEG!

image

The doc came in about 11(I think) and watched the EEG until 645 that morning totally missing the event at 815. He said he would look back and let us know what we saw. By lunch, Ryan didn’t want to eat and was super cranky so we laid down to rest. Not able to close my eyes, not even 10 minutes later, Ryan was seizing. Right hand clenched, right eye twitching, even a little right lip Elvis action… The button was pressed right away, nurses flooded in, I reassured Ryan I was there and he was OK I love him very much and is in good hands. After 4-5 minutes adavan was given via IV and the seizure stopped.

For the rest of the afternoon and evening, Ryan slept off and on. He was awake for about an hour the afternoon and evening of Monday and slept until Tuesday morning about 9am.

The news the doc had for us on Monday afternoon was new information I wasn’t really ready for. News I should have known, and maybe that I’ve heard before but didn’t really hear…

Ryans brain activity is always active. He always has spikes going on which could always lead to seizures. The doc said Ryan will most likely always have this activity and not grow out of it…so we can only hope to find the magic medication to stop the seizures from turning the spikes into something. The doctors words were heart shuddering. Needless to say, as Ryan slept, I did a lot of crying, processing, and thinking.

Between two meds, Ryans dad and I needed to make a decision. Do we go with one that could make him drowsy to start alone with some possible imbalance issues or do we go with another that causes appetite issues.

Together, we decided to go with the one with possible imbalance and drowsiness to start. Ryan is already 42″ tall and still – 3 years and running – 32-35 lbs and his appetite isn’t the best due to another of his meds…so we’ll be on this new med for a few months and as long as he doesn’t have any clinical (what we see) seizures, well start to wean off another of his meds to see where that gets us.

We were discharged on Tuesday evening. Ryan was pretty imbalanced from the new med and also still having ativan in his system…but since then has been much better. I still see that he’s experiencing some eye movements (which has been common for the last month or so), but no twitching or other seizure activity. Everything from the last few days will be reported to our neuro by tomorrow morning and we will go from there.

image

If I could ask for anything from you, the one reading this, it would be prayers. Prayers that this new medication is the miracle magic we need for Ryan to eventually only be on this med. For all side effects to allow Ryan to have a good quality of life so his personality and comical nature isn’t masked. That he grows and learns and shows us more than we ever realized he could do, say, or become.

patience.

I remember when Ryan was born. He was born 6 1/2 weeks early and rushed to the NICU after the pediatrician held him to my cheek so I could kiss him multiple times over. I hadn’t seen him again for 36 hours. I ended up being discharged before him. The feelings of going home without your baby is something no one can ever try to explain to someone who’s never been through it. Just think about the purpose of going to the hospital – to have a baby so you can bring him/her home – and then that not happening as you expected.

Not fun.

I remember when Britney was 3 months old. She was holding her head up, still wobbly at times, but still able to hold it up at times when she was interested in looking at the world around her. By 6 months, she was holding herself up on her arms and loved tummy time. By 8 months, she was sitting up on her own and was even up on all fours crawling around the house following me as my shadow did. By a year old, she was cruising around furniture and starting to really get into things.

For Ryan – things were different. At 3 months old, he was still as a newborn baby. He wasn’t really even interested in holding his head up because he ate, slept, and filled his diaper. He was still on an apnea monitor and oxygen. At 6 months old, he was more interested in holding his head up, but definitely didn’t have the strength. He played on his tummy, but not for long as he ended up face diving into the floor, his toys, or the boppy that helped hold him up. Then he’d fall fast asleep as he tired from the work he was doing on his belly.

By 8 months, we started Physical, Occupational, and speech therapy…we were working on sit on his own, tummy time, grasping toys, and the concept of possibly starting to mouth feed with a spoon. At a year old, he still wasn’t sitting up on his own, tummy time was something he learned to despise, and eating with a spoon was hard (and messy) work! Walking wasn’t even in the picture for us at a year old. At what point that would come, I had no idea – but I had to remind myself for as impatient I was with myself, I had to be patient for Ryan’s sake. He was a baby. He didn’t know any better and he had to be taught. It was going to take time. I was his mom. Of anyone, I needed to be patient.

I think about when I was pregnant with each of my children. The pregnancies differed. The births differed. They were two different newborns, toddlers, preschoolers, school-aged, and eventually, middle school and high school students. I had to learn patience with one more than I had with the other. There was a whole world passing by on fast forward who didn’t always have patience for me…the best thing I can do for my children was and always will be: to be patient.patience

I’m still learning this word and the action of having it fully and faithfully. Especially as they grow.

Especially when there is teenage drama.

Especially when there are seizures after 10 months of nothing from double brain surgery and multiple medication changes.

Are there times I walk away without answering a question they ask 5 times when they don’t hear the answer they like? Yes.
Are there times I have locked myself in the bathroom? Screamed into a pillow? Cried my eyes out in the shower? Left the house to walk outside for fresh air? Yes. Yes. Yes. And yes.

But one thing I have to remember when I feel overwhelmed with the situations and experiences they are going through in their lives: I am the only mom they will ever have. The one person they should be able to come to for anything. They’re one mom who will always protect and defend them. If I don’t continue to show them that I can be patient with them now, how will they trust they can come to me later? I have to be patient as I was when I was waiting for Ryan to hold his head up, learn to sit up on his own, walk, and how patient I am I for him to communicate with us on a daily basis.

I’m still learning. And by the grace of God, I will keep learning and growing in what this word and it’s action can do for me and my family. And for that, I am so grateful for the grace I’m given.