LIFE

So it's been a little while since I have updated on life. I always update on Camden but not a whole life over-view!

SO I figured I will update before tomorrow's inevitable picture overload of Camden's first birthday, and of course his One Year old post.

Garth and I have lived in Colorado now since December 20th.
We LOVE IT.
That's not to say we didn't enjoy our time in Rexburg, we did. We miss it and our friends there so so often!
We know our time here could be temporary too but we are milking it!
The biggest difference about living here is that we do something different as a family almost every weekend. We go to Denver and explore. We go to the museum. We go swimming. We go to baseball and football games. We have done so many fun things. I always tell Garth our life here is 100% more entertaining! Coming from a small town we were home a lot more often on the weekends. Which of course we miss sometimes too. But we have been enjoying our Summer here before Garth starts grad school next week.

We enjoy not having to drive to another city far far away to get things or to get to a real mall. (OK the mall one is mostly me). We enjoy that everything we need is here. Good doctors. Fun places. Ikea. Target. YA know all those things... [;

Although I will say I do not have the same nostalgic feelings of Colorado I used to. I've realized coming back that my home and comfort will always be where Garth and Camden are period. I will feel like anywhere is home with them.
Of course my parents house will always have a place in my heart because I grew up there!


We have been blessed with our time here.
I absolutely adore being a stay at home mom, and do not desire to do anything but raise my kids and provide all the opportunities for them that I can. It is the BEST job. I am paid daily in smiles and kisses and cuddles. I can't think of a better gig. I love the day to day. I usually always have a little project I am working on, and Camden and I try to get outside a lot. He loves swimming so we do that often.

I watch Paris on Mondays just for fun so her and Camden can have a play date. I love that too. She's so cute and I love adding her to our FHE. She's like a little sponge. This week she said "I LOVE... TO SEE... TEMPLE!" about 100 times. She's got a sweet spirit and I love all she's teaching Camden!

Garth has been blessed with his job. It is a good job, that does require him to get little sleep, but he is home more than he has been in a while. He gets off work around 3:30 on average. We enjoy our evenings as a family quite a bit!!
We don't have many friends here, like we did in Rexburg--but we just have so much fun us three together.

Garth and I have been working on several decorative projects together lately. I LOVE that I married such a handy man! And its nice for me to have projects beyond the house!

Garth is, as always, such a good man. He works many many hours but never fails to be all we need him to be! Camden absolutely loves him and copies everything he does! It is so fun as a mom to see them together!

On Tuesday of next week Garth will be back into school! It's going to be a challenging program and time wise we aren't positive how it will all work out but we plan to take baby steps, and are both prepared to make some sacrifices.
I will again be the wife of a student. NOT my favorite position, but I love that Garth enjoys school.

We move more toward Thornton November first. We are very excited. Closer to work for Garth (school is only twice a week). Much more space and an extra room for a more permanent home. Also just a better area--one I'm more familiar with too.

I am of course, so so so so excited to enter the fall season and inevitably the holiday season! But I'm resisting any holiday decor until Camden's summer party is over [;

I know people hate the overly positive posts and feel like they aren't real, but Sorry guys I just truly am extremely satisfied with life.
I love my two boys. Camden's such a funny little guy, Garth's the greatest man I could've ever found, and I love my current job-- so no complaints!


Also shout out to Jamie Lyn Jespersen! Her and I have started sending each other one thing that stood out to us each day from our personal scripture study. Not only is it cool to see what she's learning and grow closer to her but also it reminds me to be reading daily. Couldn't have asked for a better friend. It adds a great spirit to everyday, and keeps me focused on the right things.
So if you find you keep forgetting--enlist a friend for help!!




Also, these just crack me up. Screen door.

Progress in baby steps.

So. Yesterday was the first day Camden's therapist began any sort of therapy. Yesterday she also mentioned he's probably ready to be discharged. Crazy huh. (: 

So let me explain. 

Camden's myoclonus (see post titled lemonade) raised some concerns for his future. The doctors were positive that as far as the myoclonus goes it wasn't affecting his brain when his episodes happen. What no one could be 100% about was the possibility they would go on to affect his development, or if he already had an abnormality that brought about the myoclonus. Make sense? 

So Camden's kind of a late bloomer in some ways too. He struggled with nursing. Had bad bad reflux. Had MSPI. Both things caused by just a little bit of an immature system. 

So at Camden's 9 month appointment he wasn't totally meeting all the things for his average age. Plus we discovered at that appointment he was also anemic. So the doctor told me with most children he would say don't worry let's keep seeing how they do, children learn differently. However, with Camden he said lets not wait let's make sure we stay on top of things JUST in case. With the reflux, MSPI, myoclonus, anemia, developmental delay...all combined the doctor said it is too hard to know what affects what with Camden and it wasn't worth risking missing a developmental delay. So we had him evaluated as a precaution by a group of therapists. 

This is where I began to get frustrated. Camden at this point was still not eating solids and struggling with textures. So I knew that he was probably going to qualify for oral therapy. Babies only qualify if they are at least 25% behind. Camden also wasn't crawling yet. 

But he began crawling a week before the evaluation and doing almost all the things he wasn't doing two weeks before at the doctors appointment. 

But as I met with the therapists I felt Camden was kind of labeled as "behind" before the evaluation even started and he began being nitpicked even when I said he could do something at home he just wasn't wanting to do for them. He qualified for therapy which I was fine with and I kept moving forward. 

The therapists suggested a swallow study to rule out any physical abnormalities causing the aversion to chunks or texture. I was okay with this plan. 

The swallow study as you all know revealed still a severe reflux we didn't know was still there because it's now silent reflux. (He doesn't throw up anymore like he did before) 

Everything was normal physically. 

For whatever reason I feel like God was waiting for me to find that answer. 

Reflux. 

Up until this point I have been struggling to rely on my lack of knowledge (never had children before) my "instincts", and the advice of everyone around me. 

His pediatrician says "just in case"

His therapist says he needs more words. 

His neuro says this. 

His GI says this. 

So hard. Each doctor connected a different variable and ignored the others to decide something else was to blame. 

Each doctor saw an issue relating to an area which they specialized in. 

The GI wanted an endoscopy. Because Camden had great tone and weight gain but still abnormal eating habits and bad reflux. 

The therapist came and decided he was delayed in motor planning and speech as well. She thought the reflux was not the problem and that his aversion was sensory motor and that he could possibly grow up to have ADD. She actually gave me a packet of possible learnig disorders Camden could have due to sensory motor issues lol. 

The neuro said due to his slightly low tone and poor weight gain (remember what the GI said?) it could be an illness and ordered blood work. 

Then there are my friends and my family who actually KNOW Camden and actually have raised children telling me he is completely normal. 

Sometimes I felt judged by both sides. Like I was crazy for just doing what the doctors were telling me to do. Or ridiculous to the doctors for suggesting other options. 

I felt virtually no guidance In the process and just chose to take comfort in the fact that I knew I was doing literally all I could and pursuing all routes to provide the best options for little Camden. 

I've contemplated taking him out of therapy before it's really began. She's come to observe Camden and she's so so critical. When she first came Camden said "dada" and "baba" and "ah" and "eh". She said that wasn't enough letters he had learned to use. 

By the next week he added "wa wa" "ta" "na na" (imitating no) 

"La" and "uh oh" 

She said he needed more. She said his imitation of "no" being "na" was a red flag. And that he needed an m and a th and an s and an h. 

"Th" really? My 10 month old has to make the "th" sound?? 

She said he needed to be more imitative. I showed her how he imitates a surprised face. How he claps. How he clicks his lips when I do. His high five. His kisses. 

Not enough. She said he had poor motor planning. 

I asked what that meant. 

She said he needed motor planning before he could do skills like jump. 

I said he jumps all the time. 

Not enough. 

All her suggestions were based on the original evaluation that lasted 20 minutes and they wrote out things for her to watch for. 

It didn't matter how much Camden improved she just wouldn't be positive. 

It was making me so angry!!

Then that blessed swallow study! 

I was given one concrete answer with PROOF. 

reflux. 

he has reflux. 

Peace. Peace was all I felt that day. And that peace grew into confidence which grew into understanding. 

The person who helped me with the swallow study suggested that she thought Camden's aversions were due to reflux. Period. 

Simple. 

I upped Camden's reflux medicine. 

I started going slower. I introduced foods to him while he was in my lap to offer comfort. 

I let him play with food in his hands so hopefully he would be okay with it when I put it in his mouth. 

I did things to help his fear of food due to food always causing him pain in the past. 

And you know what? He eats ONLY real food now. (well and has bottles) but no purees!

Has been for over a week every meal. 

Breakfast. Pancake, eggs, fruit. 

Lunch, sandwhich pasta cheese fruit anything! 

Dinner: meat potatoes fruit veggies.

The Sky is the limit. And he feeds it all to himself. 

He had a neuro appt yesterday. It went well. She feels Camden's doing great. She wants to recheck him in 2 months and if in 2 months he's still considered "delayed" by developmental therapists then they will look into neurological symptoms. But she now feels a lot of his complications were the reflux. A reaction to constant pain. 

The myoclonus is virtually completely gone now though and we are feeling confident. 

Last night the therapist came. I was so excited to show her he can eat. I knew she couldn't possibly tell me he was still behind In sensory motor. (The only thing he actually qualified for-- she diagnosed him with MORE the first day she showed up) 

Then she said it he's probably okay to be discharged!! She's never even done any oral therapy yet lol. 

But she's going to come a couple times for the next two months so that we have an evaluation to take to his last neuro appointment and so we can be "sure" he is okay. 

I feel confident though. 

Camden learns something new almost daily. 

Someday I think the doctors will be able to see it that way too (; 

The way I see it.

Today we had Camden's swallow study.
While I hated the test and at one moment felt like I was fighting back tears, it has given me a lot of peace oddly. I didn't expect to be blessed with so much comfort and clarity in one day.
I have been praying for the ability to find more understanding and peace in the situations and questions we have found lately in life regarding Camden's well being. When I pray I have moments where I feel I understand, moments where I feel I receive immediate comfort when I ask, and moments where I feel there is complete silence on the other side of the line. I have days where I feel angry, days where I feel gratitude, nights where I cry, and mornings where I dance with my little man and laugh. I have come to realize though that while Camden's experiences may be unique for me, I am not special. CAMDEN is special. Every mother questions, worries, struggles, and prays for their child-- these things I am experiencing are just being a mother. Camden is the one who is special. He endures all with a smile.
How did I get so lucky?
...Anyway-- back to the test!
It wasn't very fun pinning down my baby and trying to force feed him the barium under the threat of a feeding tube up his nose and down his throat should he refuse to drink it. It was a mildly stressful situation.  He was okay drinking it until he was so frustrated with being pinned down. He wouldn't drink and was crying and thrashing. The doctors said it was time for plan "B". But I asked for more time. I walked to Camden's diaper bag and got the nipple from his bottles and said a little prayer that somehow someway he would be calmed and he would drink the gross chalky liquid. He did.
I don't have the results yet as far as if everything is normal physically, but they did confirm he still has as the doctor said "wicked" reflux. It doesn't still come all the way out like it did when he was little. But the doctor said Camden only drank 3 oz before he began refluxing all the way to the top of his throat.
It is nice to have an answer in one aspect of his life. I know to keep him on his medicine and I know that he is still having pain associated with eating. A therapist watched him eat and told me that his aversion to foods is highly likely because he simply is scared due to the reflux. He has learned foods hurt and so has kept himself in a safe zone. She says his sensory motor system is out of whack because he's become so sensitive and consequently has a hyper sensitive gag reflex. So when I offer textured foods its too much for him and he rejects them. Plus the chunkier the food, the more painful the reflux.
Poor guy.
It amazes me how happy and calm of a baby he is despite it all.
I have been feeling good today though. I feel knowing that he is scared is helpful. Rather than just the nagging thought of him being "behind" I know he needs me to help him learn it is okay.
I have already been able to think of some great things that I think will help him learn to enjoy food and trust it. It has been a good day.
All day all I have seen when I look at him is a happy boy with so much potential. There's not been any nagging thoughts of learning disabilities, developmental delays, myoclonus--nothing. Those are for another day I am sure, but today I have been blessed with peace.

I have been thinking lately, however, would I change things?
And I have decided no, I would not. The kids who thrive and have confidence are those who have parents that don't want them to be different than they are. And that starts now I believe. I can't wish Camden were different for my sake. I wish things were easier, for his sake, but I will do whatever I need to, to be able to be blessed with him in my life.
With that in mind I have decided, the sleepless nights in the hospital, the constant puke as a little guy, the sickness I had while I carried him-- I would do it all over again, and again and again. However, I would do it sooner so I could have him in my life earlier and be with him the longest time possible.
Plain and simple.

And with that in mind, my mind went to my husband.
While I am grateful for the lessons I learned from all those I dated if I could go back without changing who I am now I would choose to date Garth sooner and consequently get to spend more of my life with him than I will get to now.

I don't feel I gave up anything to have them in my life. I don't feel like the struggles of being a mom aren't worth it.
Sometimes I don't do anything but clean and change diapers in a day. Sometimes I don't get to do my hair. I rarely feel like I look "in style". I think I am already developing "crowes feet".
And somehow all of those things are blessings, because it means I am married to Garth and a mother to Camden.

I feel that I have been able to create a life with these two boys that is better than any dreams I could have had for myself.

Lucky me!

10 Months!

So this post is a LITTLE late, but Camden turned 10 whole months on the 21st!
Crazy how big he is now! I can't believe it.

At 10 months Camden...

is crawling and moving EVERYWHERE. I love it.

So independent.

Would rather explore household things than use his toys.

Loves sitting and observing, usually he begins to giggle at what he's observing.

Finds most things humorous.

Very into music and sounds, we play Itunes radio on our apple tv and he plays around but when it's between songs, he stops, looks at the screen, and waits for a new song to begin. He even enjoys dancing every now and again.

Squeals, and has learned he can make noise both on an exhale and an inhale!

Stands up in his crib all the time.

Loves that he can get into the sitting position all by himself.

When he wakes from naps he sits up and peeks over the bumper patiently waiting for mom. When she enters the room he squeals and then laughs excitedly.

Loves the outdoors. I often find him staring outside our window on our deck door.

Very observant, focuses on one object for a long time.

Still such a smiley guy.

Loves peek-a-boo and initiates it.

chases dad around as dad says "come" in twi

Gives kisses when you ask for them (usually pretty open mouthed on his end)

Loves all forms of water as long as it is not too cold temperature wise

Loves ORANGES. Basically the only thing he willingly chews and swallows.

Sleeps through the night, still takes two naps.

Still loves his bottle.

Pulls himself up and has begun some mild cruising.

Prefers to be on the ground roaming around.

Loves his stroller, especially when we lay it all the way back and he can lounge while we walk.

Says "Dad" and "Bom" (closest we've gotten to mom yet). Dad comes out at all sound levels and sometimes it's just "dad" other times it's "dad dad DAD DAD DAD"!

Is still our favorite baby ever!

Camden still has his episodes, some days are better than others... we have a follow up with the neurologist on the 21st.

He will be doing oral therapy for help with his aversion to foods, also has a swallow study soon to check out how he is developmentally there.

Makes us laugh all the time, and gets into all sorts of mischief now that he can move around. We've had many bonked heads and bruises since he began crawling!!

A letter to my Little Man

Dear Camden,

            Today was just one of those days.

It has been a little over three weeks since you were diagnosed with Benign Myoclonus of Early Infancy.

That week was one of those weeks. I won’t lie, I shed many tears. After we came home from the hospital I wasn’t quite sure how I was going to move forward with positivity. Your episodes were so frequent it was hard to feel like you were getting the chance to just be Camden. They started to sometimes affect the muscles in your face, and that broke mom’s heart.

I cried during church that Sunday because you had a few episodes during sacrament and it made me feel like people around us were wondering what was wrong with you. Then my primary class laughed when you had some, and I was filled with fear that someday you would be old enough to be made fun of when you had an episode.

Truthfully, I don’t think anyone really understood or ever will understand the feelings I had and sometimes still have when you have episodes. For the first week I honestly never thought I could feel even somewhat okay with them. I had a hard time trusting that you were actually healthy and okay, and sometimes I still feel that way. I called the neurologist when they got worse and you began puking during them, and I’m sure he thinks I am a little nuts. But you’re worth it.

Then Grandpa died on the 14^th. I felt so torn that night. It was the night before your follow up EEG and we were needing to leave to Iowa. I knew I needed to take care of Dad as well as make sure you received the things you needed for your health. We took a leap of faith that you would be okay no matter where we went and we packed up and headed to Iowa right after your EEG was complete. I hope that was your last time being connected to all those wires little buddy, mom can’t do that again.

Then the blessing came. Your episodes slowed down. In fact you had two whole days without any! I was able to feel peace. I was able to be there for Dad when he needed someone. I was able to help the Wright family as we cleaned up their childhood home and I was blessed by the opportunity to see how well they turned and faced their challenges with faith. Your episodes began again at the viewing, but they were still so infrequent.

Then came your well check. The doctor confirmed what I already knew, you’re a little behind developmentally bud. Daddy refused to believe me every time I told him. He’s protective. The doctor isn’t sure how much the episodes are going to affect your ability to progress. Most babies just slowly learn to gain control more and more over time. Well you’re having to learn how to differentiate being in control from not being in control, and you don’t always get to choose when you are in control. He decided we should have you evaluated by a developmental therapist so we can begin therapy if needed, just in case. Not that there is anything wrong with you, just that we don’t want these episodes to make you fall any further behind.

I’m sorry that I cried when he told me you are behind. I love you all the same, but as  a Mother sometimes we take those things personally.

I spent the next few days calling therapists, answering their surveys, and just wishing I could help you progress. I, being me, looked up some videos of developmental therapy for 9 month olds and we’ve already begun some of the things they do. I’m hoping that maybe this way when you go you’ll just be a rock star and we won’t have to worry about it all anymore! But, even if we do, we will push through it all together. Since using some of the techniques they use in therapy you have learned to accept chunks in your mouth and even chew them up! You look so darn cute when you sit there chomping on things, and you know that you are making mom happy because when you chew you beam! You still throw up sometimes if you swallow real food or chunks, but that generally happens when you have an episode while eating. You have also learned to use your hands to move you forward on your belly! Just need to coordinate your arms with your legs and then it’s a go for crawling! Ever since those episodes began I kept thinking if he could just reach a milestone, if he could just learn to crawl I will feel a little more peace about his well being.

Well, today was just one of those days. Breakfast began with back to back to back episodes. Often when they happen now Dad and I are both just silent. There’s nothing to say, and they are pretty depressing to see. You had a lot more during dinner too, which made you throw up all you had been eating basically. Sometimes I feel like when you’re allowed to make any progress, or feel any comfort in your body something sets you back. I’m sorry for that.

We’ve been working oh so hard on the crawling thing, and you’re either just really stubborn, or you’re not quite getting it. Either one is fine. You’re not a child you can make chase your toys around the room, if I move a toy away you just turn until you find another, play with your feet, babble, or you use your thighs as drums and giggle at yourself while you bang them. You’re so easily content I don’t even know why I try!

Well, I need to tell you something Camden. I cried tonight. I cried because I was frustrated. I wanted you to be able to be mobile so badly (and I know you think you can walk already, but you can’t without mom’s hands in yours!) and I know you would LOVE to be mobile too. I cried because I’m scared for your future. You have so much going on I can’t help but sometimes connect the dots to other things that may yet be to come. I cried because I feel like a bad mom for even being some what frustrated, and for the fact I do not want to worry your life away. I cried because you’re so much more than all your little quirks. You’re so happy. So forgiving, loving, curious and funny. You’re stubborn like your momma, and I guess that’s what I get right?

But most of all I cried because I don’t understand sometimes the plan for you. I have my own personal plans for you, and I so badly want you to be able to achieve and do all you want to do in life.

As I was feeling discouraged and defeated your dad finished hanging a picture in our room.  It’s a picture of Christ called “Facing Eternity” .

I’ve always loved how confident Christ looks even though there’s a lot of uncertainty in the details of the future.  He also looks so peaceful in the image because he knows his Father has a plan. It reminded me that, yes, I don’t know what is in store for you little man and that can be a little scary, but Heavenly Father does. He knows exactly what is in store for you, and you are going to reach your full potential in this little body your tremendous spirit was placed in.

I quickly got on my knees and expressed my gratitude for the opportunity I have to be your mom. There are moments when I think I cannot handle any more factors and questions. You just have so much going on that sometimes I do not know what is what or how to alleviate what! However, I would rather have the questions and the worries than no Camden at all.

I am grateful you are my son. I am grateful that Heavenly Father trusted me with you. You have brought so much joy to my life. The constant smile on your face, the all day giggles, your funny noises and squawks. The fact that you say “dad” all the time now (mom will come someday right?). You are an excellent napper, consistent on your daily schedule, sleep 12 hours solid at night. Totally flexible, fearless in new situations, love all people who are willing to show you a smile… I shouldn’t even complain. You are such a good little baby, I am blessed.

Love you little man!

Love,

Momma

Lemonade

Oh, where to begin.
I cannot sleep tonight, and I'm not looking forward to the anticipated questions and phone calls that will begin occurring, and I am not enjoying the game of trying to wrap my head around the situation. I figured the combination of all those feelings make for a perfect time to write it all out, answer people's questions while simultaneously working it all out in my head. So here goes.

I still don't like talking about Camden's seizure that occurred right before he was three months old. I'm honestly not sure as to why this is. Besides the fact it was all traumatic.  I'm also sure part of it is the choice to forget, and the other part was that no one was positive what happened.. so there was always a part of me that questioned if I really saw what I saw-- and I know others did too.
So here's just  a little snippet:
For days I told people Camden's movements were off. Understandably, people told me I was just a first time mom who was naturally concerned for her child. He had a couple of what I called "episodes" of just weird movements then screaming then sleeping. I took him to two doctors. Then he went limp and his eyes rolled in my arms and I could not get him to come back to for several seconds.
We did several tests. EEG, CT scan, Bloodwork... all were normal. They attributed it to a breath holding spell and told me some things to watch for and be aware of. More would not likely occur, but we could cross that bridge if we got there.
I spent the next few months just forgetting. I didn't want to worry and watch and wonder all the time. Eventually I got to a point where I could almost laugh at myself and how worked up I was that month, but mostly I just pushed it all out of my mind.

On to present day:
The past few weeks Camden has done some silly things. Mainly involving his head. The first time I saw his head fall while on his belly I thought "Aw he is so tired".
The second and third time I remember it happening was in Arizona. I didn't see it but I remember twice Garth getting food in Camden's eye because right when Camden went to take a bite from the spoon he "nose dived" instead as Garth put it. I laughed and thought that Garth just isn't used to feeding our little boy his solids!
Well yesterday morning I had Camden in his high chair while I was cutting up some fruit. I looked over to see his head fall, raise, fall, raise, fall. I was at an angle that allowed me to see his eyes when his head fell, which I had never seen before. I realized his eyes were basically rolling up. Not totally back, but looking way way up.
Of course I instantly panicked.
I sat in front of him and talked to him and he looked at me, smiled and babbled right back. I tried to just brush it off, but it happened again.
I knew that because of Camden's previous seizure that I was extra sensitive to little tiny things and I didn't want to make a big deal of nothing.
I took a video and sent it to my older sister and asked her to watch his eyes. At first she said it was normal. Then she texted me and said she watched again and it was a little freaky when you see his eyes. So then I sent it to a friend with a child my son's age. And this process continued for a little while as I debated and struggled to process what I saw.
I watched Camden continue to have weird twitches and head bobbing moments but he always came right back to smiling and interacting with me. I debated and I told myself I was a freak for worrying.
Eventually, I broke down and texted Garth telling him he needed to come home. Whether or not something was wrong I was too scared to be alone.
Garth called, I sent the first video, and he wasn't sure (its really hard to see his eyes in it).
He called the doctor for me though and left a message asking him to call.
I put Camden down for a nap and I could just not shake what I saw. I hadn't captured a big one on video but I knew something was off. The only thing comforting me was that it only seemed to occur in his high chair ... so maybe Camden just makes weird faces and movements while eating right?

When Camden woke I immediately set up my phone to record and my camera. He had a couple more small ones while eating again and I sent them to Garth. Garth called and said based on the video something was wrong and he was coming home.

The doctor then called and told me he was 90% sure they were seizures. He said they could be benign or they could be caused by something going on so that I needed to go in right away to have the tests done. He then said, "I know this is crazy sounding, but do you by any chance have them on video? This will give the doctors a greater point of reference. I know it seems like a weird question."
I responded with, "I know this is crazy, but I have three on video."
Brilliant.

So we headed to the ER at Children's Hospital here in Denver.
We waited for hours. Finally met with a doctor who watched the videos and described them as suspicious, watched Camden for 10 minutes but all was normal, then left to discuss options for an EEG appt with the neurologists.

my boys playing waiting for doctor

After she left Camden began having the episodes one after another uncontrollably. We tried and tried to calm him or stop them but we couldn't. I paged a nurse and no one came as Camden's head continued to bob and his eyes roll and dart about. We tried to wait but at one point Camden's head began bobbing so fast he was hitting it against Garth's shoulder but completely unaware. This made us both lose it. At that point I ran into the hall and said (..or yelled..) that something is wrong with my son and we need someone now. Possibly I was a little dramatic. I don't know, I was pretty emotional so what can ya do. The doctor and nurses ran in and were fortunately able to witness a few more episodes. They decided Camden needed to be admitted to stay over night for an immediate EEG.

So we found ourselves once again watching as Camden's head was drawn on and then connected to many many wires.

The EEG specialist asked if Camden was okay wearing hats and we laughed and said he has one on all the time. So luckily Camden really didn't mind having them on his head. He babbled and played as they just glued things to his little head. It was way past his bed time but he was such a trooper, just loved all the attention and smiled at all the new people he met.

The EEG monitors brain activity. It can detect seizure activity and where it occurs, but it also checks for age appropriate brain functions to make sure he is neurologically on point with his age. There was also a video camera with this one so they can watch what occurs on the outside when anything abnormal happens with the brain readings.
After the hour it takes to connect all the wires Camden went to sleep easily and we were told to get some rest too.

I think I slept maybe 2 hours and I can say with confidence there are 33 ceiling tiles in room 839 of Children's, all annoyingly different sizes. I checked Camden, watched all the squiggly lines on the monitor wishing I knew how to read an EEG, and googled and you-tubed all that I could about infant seizures/spasms/etc. (Which really they tell you not to do, but I wanted to make sure I was prepared with all the questions I needed to be). Plus.. what else was I going to do ? I even tried googling how to read an EEG. Yeah, no one knows. [:

The nurse came in to check vitals at 4am. Camden woke and smiled at her while she worked and then fell right back to sleep after she left.

The nurse practitioner came by and told me the "plan" and the possible outcomes. Camden could still end up being entirely normal and we could just go home. Or if they were spasms we would sit down with a team of neurologists to make a plan for Camden's treatment.

I sat there listening to both my boys sleep thinking that yesterday either changed my life forever, or marked a really terrible but not significant day of my existence. It was hard to have no answers.

Today Camden woke at 8am. He was bright eyed and smiley.

He did well through his morning interval. He played and enjoyed the new surroundings, but it was hard not to be able to take him out of his crib.  It was also really hard waiting and watching for episodes. We didn't want him to have anymore, but we also wanted the EEG to catch them so if he was going to have more we wanted them to happen while hooked up.

He did end up having one or two episodes which were really hard on Garth and I. I think we were somehow hoping they would just never happen again and that we were really just crazy.

Eventually after his first nap I took a shower. When I came out Garth had witnessed several episodes. When an episode occurs we were told to push a button which makes a time stamp on the reading so they know to review that location and watch the footage. After pressing the button we are then to describe out-loud what we see Camden doing. Garth and I traded places and I witnessed several more episodes while he was gone.
We both became emotional watching him and letting the feeling sink in that truly something was not right.

Because he had so many episodes today, they had a significant amount of data and we were able to meet a neurologist today instead of waiting for tomorrow. The neurologist began by telling us that when they watched the footage of the times we marked they were very concerned. They really thought it was infant spasms, a serious disorder. However, when they checked the EEG it was completely normal. Even throughout an episode all activity remained normal.
This left them a little unsure of a diagnoses at first. They told us what they were leaning toward but wanted him to be monitored for a few more hours and requested the videos we had from home. When he watched the video I took at home my heart sank. He looked so concerned and said he was going to show his boss right away.

So we waited.

Eventually the bitter sweet news came. At this time they are confident to diagnose Camden with Benign Myoclonic spasms or Benign Myoclonus of Early Infancy. The good news is that his brain activity is normal and his development is healthy and great. He should continue to develop and progress as any normal baby would. The unfortunate news is that Camden is indeed not in control when the spasms occur. There is no treatment necessary but as a result no prevention. He will continue to have them, but will someday outgrow them. For some reason these types of spasms do in fact occur most frequently at meal times. Scientists do not know why.

I took this out of a book titled "Movement Disorders in Childhood" By several MD's to give a little more specific information:

"Benign myoclonus of early infancy (BMEI) is characterized by episodes of myoclonic spasms involving flexion of the trunk, neck, and extremities in a manner resembling the infantile spasms of West syndrome. The myoclonic spasms typically occur in clusters. In some cases they involve a shuddering movement of the head and shoulders, and in others the movements of the trunk and limbs are extensor. There is no change in consciousness during the spells. Unlike benign neonatal sleep myoclonus, the movements in BMEI only occur in the waking state. The onset of these spells is usually between ages 3 and 9 months, but they may begin in the first month of life. The spells usually cease within 2 weeks to 8 months of onset  but may persist for 1 to 2 years. Both ictal and interictal EEGs are normal, distinguishing this entity from infantile spasms. Treatment is not required. Development and neurologic outcome are normal."

We were told that the neurologist who specializes in epilepsy was concerned just by watching the footage alone and despite the normal activity and would like to do one more repeat EEG in two weeks to ensure that we are cautious and all really is normal.
We were then discharged and able to finally take our baby boy out of that blasted crib. With him hooked to so many wires and needing to be on camera we couldn't really hold him or take him out of the crib and he was beginning to make extreme sad faces every time we sat him back down on his bum.

Camden has had 4 episodes in my arms since returning home. It is really, really hard to wrap my head around the fact that he is OKAY during them. They are not easy to watch.
I know many people post their videos of the spasms to Youtube in order to help others who are struggling to diagnose. I do not plan to post videos, I would be willing to share with someone with legitimate concern for their child looking for a point of reference.
However, the videos hurt my heart so I don't really want to put them anywhere so please don't ask just out of curiosity. I don't want him to be a spectacle. Camden has so much more to offer than that.

We are lucky to have a baby boy who has had some hiccups along his road of life but is always otherwise healthy and thriving. Camden has not had the most simple life but he has probably spent more time smiling than most 90 year olds. All the nurses told us they didn't want him to leave. He did so well and just trudged on with whatever was thrown at him.
I have learned time and time again as I have struggled, debated, and wondered about my little boy that the spirit does guide. I have learned that no matter what diagnoses would have come my way today, be it life long, or life altering, or nothing at all I know without a doubt I would love my Camden the exact same way as I did the day before.

I am an over-analytical, constantly worried person. Part of that is personality, part of it comes from circumstances I have encountered. However, I have to believe that God knew this about me and so confidently sent me a precious spirit who would need me to be more watchful and to notice. Camden's episodes are very short. They are easily easily missed, and quite honestly I do not know how long we missed them.
Now that they have been identified I have had family members say they have seen him do it, but he's back to normal so fast you instantly think oh he was just being silly.

I am grateful for God's trust in Garth and I. I look forward with still a lot of fear. There are still so many possible things to come with all of this. However, I am grateful for the experiences I have had due to the fact that they have taught me that even when everything seems wrong, somehow someway I always know we are going to be okay. God knows how I work, and he knows the way I think. I have received comfort and promptings in ways that I personally can understand and cannot deny.

I am also grateful to my parents. They came to offer support and bring us the necessities for the over-night stay. Garth and my dad were able to give Camden a blessing and my rockstar mother deep cleaned my apartment today so we came home to absolutely no work.

Here's to adjusting to our new little adventure.
Time will be the only judge.