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.

Arizona Trip and our First House Guest!

Our quick little trip to Arizona was so so fun!
It was so great to get to see Kyle and Bailee and their newest addition Brody! Been waiting to meet that little guy.
Garth and I traveled there Friday night. Our flight got delayed so Camden ended up being up until 1am! He took a little snooze for the first part of the flight and then played and babbled the second.
He was like a little celebrity in the airport--so tired, but still so happy. So of course people just stood there and talked to him while he smiled and kicked his legs.
He did really well! He went right to sleep in the pack and play in the hotel and slept great all night!
Camden did so well on the trip. Took fantastic naps when he got the chance to in his little bed or just napped on the road. Even when he missed his nap and/or bed time he was still all smiles and content to just keep up with all the adults all night long! It was our first time in a hotel with him. So fun to be able to go down to the lobby and have a breakfast as a family, go for a swim, get ready and then play in the hotel room as a family, and then go play all day with everyone else in AZ!

 Playing in the Hotel

 His first time Swimming

 Breakfast By the Pool

 This is Camden in his pack and play. He needed to wake soon, so we had opened the window, made it super bright, took his blanket, were talking like normal while we packed, and he just slept straight through. We finally had to wake him. Poor boy!

Arizona was super nice weather right now of course--not sure I could handle their summers though. The Mausers came along for our vacation and added so much fun!
We were able to spend a lot of time with Bailee's family as well, which is always great. 

We went Go-carting the first day.
Everyone was shocked that I had the fastest lap time and took first place. My dad was in denial.

 

 Little man hanging out while we ride go carts!

Then we went to Organ Pizza for dinner. It's pizza but a guy plays the organ which controls several instruments all on the walls and ceiling and he plays popular songs and movie soundtracks while you eat. It was really cool and the babies enjoyed watching. We even taught Paris to do the Thriller dance! Her version is slightly modified, but I think much cuter than the original anyways [;

That night after dinner we explored the Temple grounds and then took a walk to the Dairy Queen.

The second day we were able to have breakfast as a family, take the kids swimming (they didn't enjoy it as much the second day--the water was a little cold) and then head on over to Kyle's before church.

Brody's blessing was very heart felt and tender, and I'm so grateful he has such wonderful parents who I know will raise him right. He is so blessed to be their son! Plus he looked adorable [:

That evening we went to the park to have a BBQ as a family. We met some cool friends of Kyles and we all just enjoyed relaxing and talking.

I attempted to take some pictures of Brody but he was hungry and I had to leave [;
But I got some of his mom Soothing him!

Then it was off to the airport for Garth and I! Another late night of traveling which resulted in Camden going to bed around 1am. He actually slept on a little make shift bed on our floor in our bedroom because Garth's sister was arriving early that morning after driving from Iowa with her two kids so Camden's bedroom was on reserve.
The next day Camden got to play with his cousins Mataya and Keighlynn.
He found absolutely everything Keighlynn said hilarious and giggled at her non-stop. This resulted in her walking around saying "Camden likes me!" it was adorable.
We took Tasha Down Town to show her Denver and we shopped the 16th Street Mall.
It was another fun day out with the kids and spending time with Family.
That night we introduced her to Q-doba (one of my all time Favorites) and we just had a night in catching up.
She headed out this morning to finish her drive back home to Utah, but we are so grateful to have had the opportunity to see them and glad she was willing to come visit us!!

It's been a crazy busy weekend but so fun to be with family and to just enjoy being out and about!