Exceeding Expectations

A year has passed since the last Ryder update, and as I said last time, I'm happy I haven't felt the need to post sooner, but it has been a crazy year.  It took some time to process some of the information/changes and I didn't feel like I could hold it together if there were any questions from the people in our lives who care so much about our family.

At the end of January 2015, Ryder went for a follow-up EEG shortly after he was weaned off of the seizure med that was treating his Infantile Spasms.  It showed none of the chaotic brain activity that had been present before.  We had been expecting these results because of the improvements we had seen in Ryder's development and awareness, but it was still exciting to hear someone say it out loud.

During January 2015, Ryder started an "intensive walking program" with his government funded physiotherapist.  This resulted in 6 physio appointments per week (3 with his government physio and 3 with his private physio)...it was exhausting to say the least.  While I greatly appreciate all the people who work so hard to encourage Ryder and push him to reach his full potential, there are some people who should not be working with children (or more specifically be allowed to speak to the parents of children with special needs).  At every appointment during his walking program I had to listen to the physio tell me that it was quite possible Ryder would never walk on his own...that I needed to practice more with him using a walker at home (because we weren't already busy enough)...that he had to learn (ie. I had to force him) to keep his hands on the supports of the walker because if he couldn't do that, then he wouldn't be able to use the walker, and if he couldn't use the walker then he wouldn't be mobile...it was defeating.  No parent wants to hear that their child will never do something as "simple" as walk.  

I helped strap him in to a crazy contraption that was teaching him how to put one foot in front of the other, and walked in front of him waving toys and singing like a crazy person trying to keep his attention.  I felt so much pressure to ensure he made progress. At the beginning of the intensive walking program, the physio said that if he wasn't making gains, then she would cancel the remainder of the sessions and try again in a few months.  For those that know me well, I don't like to lose and I don't like to be wrong (at least I can admit it now!).  I couldn't let her "win" and be right about Ryder not having the ability to ever walk.  I had to prove her wrong, I had to win this one. However, we really didn't see much progress with the walker and the other weird machine he was using.  He continued to let go of the handles of the walker, and would get bored and just sit in the middle of the hallway while we were doing laps. It was (as has been the case with many of the things in Ryder's life) just such an incredibly forced and unnatural way to learn how to do something that comes naturally and easily to vast majority of the population.  Luckily for me, we have our amazing private physio (Kara) who continued to work with Ryder during his other walking program.  This was where we were seeing the gains.  He had been taking a small number of independent steps with Kara for about two months, and plateaued around 6 steps in a row.  The following week he jumped up to 12 steps in a row.  A few weeks later he took 26 steps for Kara (the same week the other physio told me once again that it was likely Ryder would never walk on his own), and then that evening in the middle of March 2015 we went outside to play with Ethan, and Ryder just started walking completely on his own.  He'd figured it out and hasn't looked back since!

Ryder had his appointment with Ophthalmology at McMaster at the beginning of March and we were pleased to hear they were happy with how his eyes had continued to develop after being diagnosed with Delayed Visual Maturation (basically they said his eyes were just developing slower than would be expected, but that they were developing).  His nystagmus has greatly improved and was mostly only noticeable when he is tired or is trying to focus on something that was slightly out of the central field of vision. They prescribed glasses to help with the alignment of his eyes so that it was easier for him to use his vision more effectively.  A few weeks later I took Ryder to Sick Kids in Toronto for a follow-up Ophthalmology appointment and to have an ERG done.  The ERG is a sedated test that allows the doctors to evaluate his vision more precisely and was being used to check if Ryder's seizure medication had damaged his peripheral vision in the past year.  I was confident that this was a pointless appointment because we'd just had a great check-up two weeks earlier.  I came back in to the room and the conversation went something like this...
Doctor: The test went well.  His peripheral vision has not been damaged.  Ryder has bullseye maculopathy and his central vision is significantly reduced.  
Me: Umm, what?
Doctor: He has lesions in the back of both his eyes.  He can't see out of the centre of his eyes.  He can't see your face.
Me: Silence...
And then the doctor walks out...I had no words, I couldn't tell him to stop and come back and explain what the heck he was talking about.  I had a million thoughts going through my head: No, this guy is wrong/The Mac doctor *just* told us his eyes were good/This isn't supposed to happen until he's 10/He's walking around and doing kid stuff/He has to be able to see/He can see/He doesn't know what I look like/He won't be able to read/He won't be able to drive/He has to be able to see...It just kept going until I was sobbing in the treatment room while Ryder was unconscious on the table.  The nurse asked if I was ok.  I said no.  Because I wasn't.  This guy I had never met before, and hadn't even introduced himself to me, just told me my baby was essentially blind, and then walked out of the room...all in a span of 30 seconds.  She asked if I had been told this information before, although I'm sure she already knew the answer based on my current state, and said she would watch Ryder while I went and called Ben, and that she would get the doctor to come back and provide a better explanation.

A few days after the surprising eye diagnosis...
he's still the same Ryder he was before!

When the doctor came back in, he did re-state what he had said earlier, but didn't do a very good job of explaining what all of this meant.  He couldn't tell me how much Ryder could see, but he did say that Ryder had likely had these lesions since birth.  He couldn't explain why no one had ever noticed this before.  He couldn't tell me how long it would be until Ryder's central vision was completely gone.  Basically I didn't get any answers.  It was a rough few weeks.  I overanalyzed every little stumble, trip, and fall, and started noticing new things about the way Ryder looked at people and toys.  Then I started to think more logically.  The reality was that nothing had actually changed since before the appointment at Sick Kids.  Ryder's vision was exactly the same as it had been before.  The only thing that had changed was our understanding.  When I came to that realization, things calmed down and went back to our normal.









Well, this has been a long one, and I only covered three months of the past year! Thanks for reading. We appreciate everyone's support of Ryder!

Falling into a new normal

He is all over the place and climbs on EVERYTHING!

Ok, I will be the first to admit, I've been slacking on the posts...it's been over six months, but when it comes down to it, I'm glad I haven't had any huge news to update.  Things in our household have have settled down to a level I can deal with most days...

Happy boy figured out how to pull up and cruise,
and showing off his new feeding tube.
August 2014

Ryder is doing great.  He has remained seizure-free since mid-May 2014 which is a huge step in the right direction.  After a long and drawn out 7-week wean from his seizure medication, he finally stopped taking it on January 20.  He has been started on another anti-epileptic medication to *hopefully* prevent the other types of seizures he is likely to develop in the future due to his metabolic condition.  His neurologist was willing to completely take him off all seizure medications and just wait to see what happened...but I was not having a good day that day so when he mentioned that idea and I immediately started sobbing he quickly offered a "maintenance" medication to alleviate my obvious stress and anxiety over stopping all seizure meds completely.  Now that Ryder is off of the drug to treat Infantile Spasms, we wait...it was exactly one month after he stopped the medication last Spring that he relapsed.  I can't put in to words how painful an experience that was, but needless to say I will be able to breathe much easier when we make it to the end of February with no sign of this awful disease (that's not to say it couldn't come back months down the road, but that one month mark seems like a very big deal right now).  Ryder will have an EEG done next week to ensure the chaotic brain activity hasn't returned in the meantime.  But based on his physical and social development, I expect it will come back normal.  Fingers crossed!

While we have had several trips to emerg, none have been overly traumatic or lengthy.  Just the odd respiratory issue or gastro bug which in Ryder's case require IV fluids, bloodwork, and monitoring for a few hours.  In September, I was able to set up a conference call between Ryder's metabolic doctor and Dr. Venditti at the National Institute of Health in Maryland (he is the only doctor in North America who specializes in Ryder's condition).  The call ended with our doctor accepting Dr. Venditti's recommendations on changing the doses of some of Ryder's medications, and reducing the restrictions on his daily protein intake.  It was both frustrating and rewarding to get news of the changes because they were all things I had been requesting for several months (based on reading countless medical journal articles written by Dr. Venditti and his team) and our doctor had continually refused to acknowledge my suggestions.  We will be taking Ryder to Maryland sometime this summer so that he can take part in Dr. Venditti's natural history of MMA study.  

Practicing steps with Kara

He started private physiotherapy in June and the changes both physically and socially have been absolutely incredible.  While our healthcare system is great, seeing a government-funded physiotherapist once every 4-6 weeks for an hour is not beneficial in the least.  Kara is one of Ryder's biggest supporters, but she also has an amazing personality and makes my day better and more positive every time she visits (it's kind of like physio for Ryder and therapy for me!).   Ryder and Kara work together three times a week and we have seen such amazing progress, which I truly believe would not have been possible without her help.  Kara's super positive outlook and clear love for her job are admirable.  She's basically just amazing all around, and Ryder's huge gains in development prove it.  He began crawling in the July, standing independently in October, and took his first steps in November.  We are still waiting for him to use walking as his main method for exploring and getting around, but he has the skills, we just need his cognitive development to catch up and realize how much more efficient walking is compared to crawling...but it will happen...and hopefully soon! 

November 2014...some of his first steps!

 January 2015...making lots of progress!

While we have come to accept our new normal of multiple medications and an injection each day, a minimum of four appointments each week, bloodwork every four weeks, and hours upon hours feeling happy over every little accomplishment while at the same time worrying about what the future holds...this is our life, it's amazing, and I wouldn't change it.

My amazing boys

When it rains, it pours...but the sun will shine again.

April 30th marked 5 months to the day that Ryder had been seizure free.  It was also the same day he relapsed.  Shortly before bedtime that evening, out of nowhere he had 30 spasms over a period of 5 minutes.  After speaking with some knowledgeable parents of children that have the same seizure condition as Ryder, and having them tell me to wait until the morning to contact his neurologist, I took him to the emerg.  We were seen extremely quickly thanks to the handy letter we have from his metabolic doctor that says he cannot, under any circumstances, wait to be seen.  It was our shortest visit to emerg yet (4 hours!), and our first hospital trip that did not involve blood work, yay!  It was exactly what the other Infantile Spasms (IS) parents had said would happen...the emerg docs agreed from my description that it was likely his IS had returned but they did question whether it was simply behavioural.  They sent us home after requesting an "urgent" EEG...for two weeks later.  It's difficult to explain to other people, let alone doctors who think they know everything about epilepsy, how serious this form of epilepsy is.  It's not just a seizure here and there where brain activity is interrupted for a brief period of time.  If Ryder is having clusters of spasms here and there, that means his brain activity is interrupted and chaotic ALL THE TIME, even when he's not outwardly displaying the spasms.  He can't learn.  He can't develop.  He will regress and lose skills for as long as that chaotic brain activity is occurring.  We got ahold of the neurologist the next morning and he was started back on his medication within 12 hours of seeing that first cluster of spasms.  About 1.5 weeks later we stopped seeing the spasms.  On May 21st, Ryder had a clear EEG which we were incredibly surprised by since the medication he is currently on did not work when we had tried it in the fall when the seizures first started.  Ryder will stay on this medication for 6 months at which point we will re-evaluate with his neurologist.  

Ryder is now sitting on his own and is managing to get himself stuck under the couch/chairs/tables because of his crazy combination of rolling, a little bit of bum scooting, and some backwards shuffling on his stomach.  

He is incredibly happy (we all survived the grumpy seizure med phase, thank goodness!), smiley, and loves to laugh.  He has little conversations with us and waits for his turn to "talk".  He has also recently become interested in standing with support.  I am so incredibly proud of the progress he is making.  Having the seizures under control once again has allowed us to focus on all of the positive changes we are seeing, instead of being overly critical of the skills he may have been losing.  With that being said, it has been getting more difficult to spend time with friends whose babies are around the same age as Ryder.  Seeing what other kids his age are doing, it is so difficult not to compare him and see the skills he is lacking.  It would be so much easier to keep him in a bubble and be thrilled with everything he has accomplished and continues to learn, but I adore our friends and their kids and can't imagine out lives without them and the support they have given us.

Something to consider when speaking to parents of children that have medical issues...(and then I will go back to embracing all the positive things in my life, because there really are so many!).  I understand that it is a common saying, but please try and put yourself in the shoes of someone whose child is medically fragile.  I can't even count the number of times of heard (and please know that I do realize I am much more sensitive to these types of things now than I was before): "Blah, blah, blah, my life sucks...but at least my kids are healthy..." or "I don't care if the baby is a girl/boy, as long as it's healthy..."  Umm..so what if you kids weren't healthy?  Or your baby was born with a medical condition?  Then what?  Would you love them less?  Is a sick child less valuable/important than a healthy child?  Of course not.  Yes, your life would likely have additional stress, but it's still your life and that baby is still your baby and you will love them just as much as their "healthy" sibling, or as much as your would have if they didn't have something different about them.  Ok, rant over. :)

Our Crazy (Happy) Life

It seems incredible that is has been exactly 2 months since Ryder was finally discharged from the hospital. Time has flown by at an amazing pace. We have kept busy with lots of appointments, therapy time, and play dates. 

We are ecstatic (to say the least) that Ryder has been seizure free for 4 months and just a few days ago was weaned off of all of his seizure meds.  His neurologist is so confident that he has beaten infantile spasms (IS) that he is not putting Ryder on a "maintenance" med.  He will be med-free when it comes to seizures, and fingers crossed he will remain that way for a long, long time.  The weaning process took 4 weeks to slowly cut down on his dose, but as we continued to reduce the amount he was getting we began to see some very positive changes in Ryder's development and his behaviour.  It was an exciting month around here.  

Sedated and awaiting his ERG (special MRI) of his eyes at Toronto Sick Kids.  This test checks for any peripheral vision loss that may have occurred as a result of the seizure medication.

He is finally sitting up on his own (within the last two weeks) and is able to balance for a little while without using his hands for support.  He also "found" his feet and has improved the flexibility in his hamstrings (both of these factors were contributing to him being unable to sit previously).  

Sitting like a big guy and inspecting his hand!

Another super exciting change in Ryder happened in the last few week as well.  We had stopped offering him bottles for several weeks because it was always such a fight....a fight that ended with Ryder screaming, coughing, choking, aspirating, and/or throwing up.  It just wasn't worth the stress (for any of us) when we knew he could get  everything he needed from the G-tube.  A few weeks ago I decided to try a bottle again, and to my complete amazement he drank from the bottle the same way he would have several months ago...no screaming, no aspirating, and only a little bit of coughing.  As much as I don't want to admit it, having the feeding pump around was really easy to get used to.  We could feed Ryder absolutely anywhere (including while driving in the car) and just go on with our day without having to stop and feed him a bottle.  Having him eat from a bottle again has taken some getting used to since I have to actually stop what I'm doing and feed him.  However, I have realized that I was missing out on snuggling and holding him, and I now look forward to feeding him his bottle.

As Ryder's 1st birthday (and Ethan's 3rd birthday) is just over a week away, I've been thinking a lot about how much our lives have changed over this past year.  We happily became a family of four and welcomed the sweetest little baby in to our lives.  Although the challenges and obstacles we have faced were certainly not what we had imagined, I am blessed to have chosen such an amazing partner in life.  He is supportive, patient, and tolerates my very specific ways of doing things (and the meltdowns that ensue when things don't go my way).  He forces me (I mean this in the nicest way possible) to keep things in perspective.  I am incredibly proud of how strong we have been as partners and parents in what has turned out to be a very unpredictable situation.  Despite the unknownness of Ryder's condition, we continue to live the life I have always dreamed about: we spend quality time together as a family, and are raising two of the sweetest, kindest, and cutest boys I could have ever imagined in a happy and loving home.  What more could I ask for?

Love those cheeks!

Our only limitation is our belief that it is so.

~Moshe Feldenkrais

It's all about perspective!

On January 5th, we finished off Ryder's course of steroids to treat his seizures.  On January 9th, we went for another EEG to check for the chaotic brain activity.  I'm certainly no expert on EEGs, but I was sure that the squiggly lines I saw throughout the 45 minute test were the same squiggly lines we had seen twice before.  I had gone in to the appointment with my scientific journal articles thoroughly highlighted, and with notes made on the next treatments I wanted to try, and in which order we were going to pursue them. Our amazing neurologist came out to get us from the waiting room with the same sympathetic face and body language, and soft-spoken greeting that we had gotten used to when we were about to get more bad news.  When we sat down, his first words were "Well, let's get right to it.  The seizures and hypsarrythmia are gone.  The steroids worked."  To say that those were not the words I was expecting might be the understatement of the year.  Ben and I looked at each other in shock and said nothing.  The appointment was quick.  We took a look at the images from the MRI and saw the areas of Ryder's brain that are swollen (related to the metabolic condition…not the seizures).  And that was it…follow-up in six months.  (Six months seemed like an awfully long time, so I pushed to have another EEG and appointment in three months).  Ryder will stay on an anti-seizure medication until then, and from there we will wean him off and start on a maintenance medication.  I don't think I will ever forget that day.  Things have obviously been difficult the last few months, and just when we get into a routine or wrap our heads around something, another problem pops up and disrupts everything.  This was the best news we could have asked for!

Coincidentally (or maybe not…) on the day Ryder finished with the steroids we started noticing a decrease in his appetite.  Not a huge deal, he was still eating.  Two days later (Tuesday) at a regular metabolic check-up, they checked his weight, length, and head circumference.  His length was shorter and his weight was less than they had been 2.5 months earlier, (both were checked multiple times that morning) and he had dropped 50 percentiles on the growth charts .  I immediately felt guilty (darn mommy-guilt!) for not noticing, but the dietician explained that since both his weight and his length had decreased he still looked very proportional so it was impossible to notice from looking at him.  We left the appointment with instructions to get more calories in to him.  That night he was admitted to the hospital (after an episode of projectile vomiting) for IV and metabolic bloodwork and we were discharged the next afternoon.  On Thursday, he took in only 10 oz of formula/breastmilk.  He began completely refusing to eat.  I spent an hour getting him to eat an avocado/banana mixture that he had devoured in minutes a week earlier.  He then proceeded to throw up the entire bowl.  We fought with him until Friday and decided it had been going on long enough and was only getting worse.  

When we got to the hospital on Friday evening, our metabolic doctor and dietician came to check on Ryder.  As they were leaving, the dietician said, "I will see you on Monday when I get in."  My response was something along the lines of "Uh, well I really hope we're not still here on Monday, but OK"….3.5 weeks later we finally went home!

They put in an NG tube (nasogastric tube...goes through his nose, down his esophagus, and in to his stomach) to feed him and an IV for hydration.  He continued to projectile vomit multiple times a day for the first 2 weeks.  He also continued to refuse to eat by mouth and was seen daily by an amazing OT.  While Ryder was admitted to the hospital he underwent several tests (echocardiogram, holter monitor, EKG, and swallow study), all of which showed normal results, yay!  

NG tube

We finally made the difficult decision for Ryder to have surgery to put in a G-tube (a tube that goes directly from the outside of his abdomen into his stomach).  As we learned through experience, it is *very* easy to pull an NG tube out (Ben and I both did it once, and Ryder pulled it out on his own twice), and putting it back in requires a trip to emerg and an x-ray to check for placement.  The more we thought about the G-tube, the more sense it made: it stays in place, there is no risk of "feeding his lungs" if the tube gets placed wrong, he can take his meds through it even if he starts eating on his own again, and when/if he doesn't need it anymore it can be removed.

Two days after his G-tube surgery.  The lovely hat
is covering the IV they had to put into his head.

We finally came home at the beginning of this week and are still trying to figure out our new "normal" around here.  Ryder is being fed every 3 hours, and each feed takes 1 hour to complete…which doesn't leave a lot of time for getting other things done, but we are getting the hang of it pretty quickly.  Yes, a G-tube has always been one of my bigger fears, but I have realized it's all about your perspective:  Ryder has gained 4 pounds in the last couple weeks and is working his way back to where he should be on the growth charts…he is happy and there is less stress for us because we don't have to force feed him anymore…he is at home where he belongs…he took a few bites of some purees over the last two days…his homocysteine level is the lowest it's ever been...he's almost sitting up on his own...and he is SEIZURE-FREE…So, all in all there is a lot of stuff to be excited and happy about around our house these days!

Another bump in the road

Those weird movements we had been noticing more and more frequently were suspected seizures.  It happens so quickly…each seizure lasts about 1 second.  All of a sudden his head will drop really quickly and his arms go up at the same time.  At the beginning of October is was happening maybe 1-2 times each day.  By the end of October they were happening in clusters of 10-20 seizures a few times each day.

I was able to get a cluster of the seizures (about 10 seizures in 2 minutes) on video and e-mailed it to the paediatrician.  She was in contact with the neurologist and sent him the videos as well.  The following Tuesday, the neurologist called to ask us to come in right away.  After a long and drawn out assessment of Ryder's symptoms and the videos, they told me that he was having something called "infantile spasms" (IS) which are incredibly serious (much more serious than head drop seizures).  He was started immediately on a seizure medication and an EEG was scheduled for the next day.  

Ryder during his EEG

Infantile spasms are caused by a specific pattern of abnormal brain activity.  The way that the neurologist described infantile spasms is like this: There is (abnormal) static going on constantly in Ryder's brain.  For as long as that static is occurring, he cannot learn anything, and his existing skills (smiling, babbling, rolling, sitting, etc) will regress.  In many cases, the babies that get these seizures have "bad" brains (the neurologist's wording) and would not likely develop normally whether or not they were having the seizures.  He is confident that Ryder doesn't have a "bad" brain because of his "normal" development up until this point.

The medication has one major side effect and that is permanent peripheral vision loss that cannot be regained once the medication is stopped.  So off to Toronto Sick Kids we went to have a special test done on Ryder's eyes as a "baseline" to track any potential vision loss in the future (basically an MRI of his eyes).  Good news was that they said his eyes looked normal!

The medication turned him in to a little zombie baby.  He slept about 20 hours per day for the first week he was on the medication.  The seizures stopped as soon as he started on the medication.  It honestly seemed like a miracle and like it was too good to be true.  Unfortunately, it was too good to be true and after 12 days seizure free, he started having small clusters again.  His follow-up EEG was cancelled because if the seizure movements are still present, then that means the chaotic brain activity is still present too.  The neurologist saw us within a few hours of the seizures returning and Ryder started on another medication called Prednisolone (the active form of prednisone).

This was the medication the neurologist had warned me about the first time we saw him.  One of the side effects is extreme irritability.  The doctor stressed again and again how I could not even begin to imagine how irritable and miserable Ryder would be…essentially he said Ryder would be screaming 24 hours a day for as long as he was on the medication…they gave us a prescription sedative for Ryder for the times when we couldn't stand the screaming anymore.  There are also other side effects like excessive weight gain in the face and trunk, increased blood pressure, heart problems, and a decreased immune system (the nurse said I should probably just not leave the house for the next 8 weeks…).

As soon as Ryder started on the medication we noticed a huge increase in his appetite.  He didn't get grumpy right away which was a nice surprise!  The seizures continued for a few days and the doctor increased his dose to the maximum for his weight.  The increased dose seemed to work and we have not seen any seizures since November 30.  His follow-up EEG showed a very slight improvement in the hypsarrythmia (chaotic brain waves), but unless the abnormal brain waves are completely gone, the treatment is considered a failure.

Throughout his prednisolone treatment Ryder was definitely grumpy.  He grunted and groaned ALL the time.  He stopped sleeping…he was sleeping a maximum of 6 hrs each day.  The sedative we had been given, which I had thought would mean a full nights sleep, knocked him out for 2 hours and then he would be up the rest of the night groaning.  It was exhausting.  He stopped smiling and laughing.  He wouldn't try to sit up.  

After about 3 weeks on prednisolone, we were about to get a few smiles and laughs out of him.  It was wonderful!  Other than being miserable, we haven't seen too much regression with his skills, and we are thankful for that.  He loves being held and snuggled, and despite being grumpy, he is still such a calm and laid back little guy.  He is definitely a fighter and we couldn't be more proud of all the things he is learning and trying to accomplish.  

I have heard other IS parents refer to their children's accomplishments as "inch stones" as opposed to milestones and I can certainly see why they do.  When someone tells you that your baby is going to lose all of the skills they currently have and essentially go back to being a newborn, you have to change your perspective.  We are thankful for all of the "little" things and are learning not to take anything for granted.  He can hold his head up, smile, laugh, and roll.  Considering everything he has been through and is going through right now, he is doing well!

Happy Holidays!

Ryder's First 6 Months - Part 3

After Ryder's first visit with the Ophthalmologist, he was referred to the Blind-Low Vision Program (at 5 months old).  An absolutely amazing woman named Wendy comes to our house every other week.  She is an "Early Childhood Vision Consultant".  She brings toys and other aids to help develop Ryder's eyes and work with whatever vision he does have.  She is one of the most kind and compassionate people we have dealt with thus far.  She comes with us to eye appointments, knows what questions to ask the doctors, and explains in plain English what the doctor is saying.  She is wonderful!

Another specialist that comes to the house is a woman from the Infant-Parent Program.  She is responsible for tracking Ryder's development.  We had a fantastic visit in mid-September.  She was so pleased with Ryder's development that she even offered to discharge him from the program.  I politely declined, and asked her to continue monitoring Ryder as children with CblC (and other forms of MMA) can develop typically until the age of 2-3 years, and then their development starts to slow down and not keep up with other children of the same age.  I was concerned because he was not yet sitting up on his own, but she told me it was fine and that he wasn't expected to do that until he was 9 months old (he was 5 months at the time).  However, I was ecstatic that she was so impressed with Ryder, and I let myself believe he was going to be just fine.

The following week I took Ryder to the paediatrician.  She was pleased with his vision (tracking objects), but was concerned because he was not sitting up and because the back of his head is pretty flat (he sleeps….a lot!).  She referred him to an occupational therapist to deal with both the sitting and the flat head.  This appointment brought my level of excitement down a few notches, but I was still hanging on to the fact that things just might turn out ok.

We saw the metabolic doctor and dietician at the beginning of October when Ryder was 5 1/2 months old.  We talked about development and starting solids.  While the doctors were out of the room Ben and I had a brief conversation about any other concerns we might have.  I mentioned some weird movements Ryder had been doing where his head flopped down and his arms went up.  We decided it wasn't a big deal and didn't mention it when the doctors came back.  Ryder needs to eat a certain brand of baby cereal that has a low amount of protein.  If he has more than 1 serving per day, then anything beyond the first serving has to be a special medical baby cereal so that he doesn't get too much protein in one day.  We started the baby cereal when he was just over 6 months old and he LOVED it!  He was just like Ethan was when he started eating cereal…grunting for more and diving towards the spoon.

First time eating cereal!

About two weeks later on Halloween day, Wendy (the vision specialist) was at the house.  She noticed Ryder do a weird movement while he was lying on his back in his "special room."  (It is a box that he lays inside with toys hanging from above and mirrors on the side.  He can "talk" in there and the sound is contained so it is stimulating for his brain.  The toys are all over the place so he can practice looking from one toy to the next.)

Ryder's Special Room

Later that same day, I went for lunch with my mom and I mentioned the weird movements with the head dropping and arms going up.  She suggested looking in to possible seizures.  Obviously I googled it the second I got home.  It looked as though Ryder was having a type of seizure called "head drop seizures".  I called the paediatrician immediately and she told me to take him to emerg.  The doctors came in to evaluate him.  I wasn't aware but the paediatrician called the ER doctor and told them to keep Ryder over night and do an EEG immediately.  Obviously the message didn't get passed along to the doctor that actually saw him.  The ER doctor that saw him said that since he didn't have a fever and his development was on-track, he was being discharged.  They referred him to a neurologist for the following week and sent him home.

We went home and enjoyed the boys' first Halloween with (very rainy) trick-or-treating, which I'm really glad I didn't miss out on.

Cutest little Lion and Dino I've even seen!