Wildman Emmett!

This turkey's determined.


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6 Months And Another Kiddo Later…

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Six months! I have wanted to make so many updates about so many things and have just been busy, preoccupied, and exhausted. I’m starting this while Eleonore is having a (surprisingly) long afternoon nap. Hopefully I’ll be able to hit that publish button over to my right tonight at some point.

Oh, Eleonore is the new kid, by the way. She and Emmett have definitely been keeping me extremely busy, to say the least. She’s got quite the personality already! She deserves her own blog post, so I will have to work on one of those later. Which makes me think I might have to change the blog name… maybe a little add on at the end of Here Comes The Wildman, we’ll see what I can come up with.

I really wanted to update today because tomorrow is March 26th, Purple Day! I updated all about it last year. This year, we are celebrating Purple Day in a whole different way. A much better way! Some of you may remember our hospital stay that lasted for almost a week last summer when we were trying to wean Emmett off the ketogenic diet and it went horribly wrong. Well, since then, he has basically been seizure free. I am still hesitant to even type that out and put it out into the universe. He went from having dozens upon dozens (probably even 100s on some days) of seizures every day down to basically… none. We had started him on a new medication, Valproic Acid, and this one has been the first, and only thing that has worked to control his seizures. And because of this our little Wild Man is thriving and making so much progress! It’s incredible. His vision has dramatically improved, he is starting to crawl, he can sit up unassisted, he can bear weight and stand for short periods of time (with assistance), he is starting to drink on his own using his sippy cup, he is interested in touching his food and tries to bring it up to his mouth, he is interested in his daily surroundings and is starting to explore everything from curtains to things on the counter, he watches me as I eat and drink and watches us enter rooms, leave rooms and walk across rooms. Honestly, it’s just amazing to see. And it’s all been happening so fast we can hardly keep up with him!  He looks at us so much more and even scoots towards us when we’re playing on the floor. Just to have him purposely come towards me makes me want to cry. It’s just a little “hey mom!” and then he’s off to bang on his piano or drums. He plays with his toys! Like, really plays and interacts with them. Before he wasn’t motivated by toys at all and never played with anything. And any toy that made noise or played music would startle him and trigger seizures, so it’s no wonder he didn’t want to touch anything. He even goes towards Eleonore and watches her. He touches her face sometimes, ever so gently. She loves him, too. They were sitting beside each other in their high chairs last week and he reached down and held her hand. She looked up at me and just beamed! She was smiling so big, so happy that her brother touched her.

Honestly, we are just over the moon. We’ve been so busy cheering on both of our kiddos, hitting inchstones and milestones, seeing both of their personalities developing together… regardless of how trying it’s been or how tired I am all the time, both kiddos growing up together is such an amazing thing to see every day. This Purple Day will be a very happy one for all of us.

Crawling/scooting!

Drinking with his sippy cup!

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Fun With Pudding! And I’m About To Split Open And Pop!

This happened today.

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Um, I have the cutest kid ever.  LOOK AT THAT FACE. He makes my heart melt.

We decided to put him in his stander today and see if he’d like to play with some pudding. He seemed kind of confused for the most part but didn’t mind it, either! We had to kind of coax him at the start and he seemed a bit weirded out that he had sticky stuff all over him. This was very different for him since we could have never done this while he was on the ketogenic diet.

More cute! A lot more cute!
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Giving ol’ mom the stinkeye! This is a new face he’s started making pretty much all the time. Hilarious!

Emmett has been doing really well since he’s been off the diet and on the new med (valproic acid). It’s the first time since he’s been born where I’ve felt any sort of relief in regards to his seizures and health in general. And I know there are honeymoon periods when it comes to trying new medications when you’re dealing with intractable epilepsy, but I’m really hoping we’ve found a winner this time. He’s so much more alert and present! He seems to know what’s going on around him and can interact a little now and is starting to express some of his feelings. He actually plays with toys for more than 2 seconds and has fun doing it! We’ve even been able to dig out his toys that play music and make sounds! He couldn’t play with any of those before because they would trigger his seizures. It’s been so nice.

He’s also been eating really well, too! Although he still doesn’t like fresh fruit so hopefully that will change soon. But he LOVES asparagus. So much that for the first few weeks off the diet he needed asparagus at every meal.  If I was to get anything else into him I had to mix it with asparagus. But I’m not complaining, asparagus is a good thing to want to eat lots of.

Emmett’s also been doing really well getting up on all fours. That has been coming and going for the last year now. He goes through phases of being interested in it, but more so now that his seizures have been better controlled. He’s been propping himself up and sort of rocking back and forth and putting his hands forward. Or he bounces up and down and smiles. He’s even been grabbing onto the bumpers of his crib to steady himself and push up!

Seriously, it’s amazing just how different he is with his seizures controlled. It’s almost like we’re meeting him for the first time. It’s been making my heart swell more and more every day.

Speaking of swelling, my stomach has swelled and reached it’s breaking point. The muscles on top of my stomach have decided to tear and separate leaving me pretty much on bed rest. It’s fancy name is diastasis recti.  About two weeks ago I picked Emmett up out of his highchair and when I set him down on me to carry him, I felt such an awful searing pain. Emmett weighs 30lbs and his three feet tall. And since he doesn’t help support himself when we carry him (wrap his legs around us, etc) he just hangs on us. I guess my belly couldn’t take that extra weight anymore which made me feel horrible. I can’t pick him up or hold him anymore and my mom had to come down a week early to help do all the lifting. I’ve been feeling pretty useless and upset that I can’t play with him, especially since I’ll be getting a c-section that will bust me up for even longer. At least this happened towards the end of my pregnancy. So I’ve been feeling pretty uncomfortable and complainy. And here are more complaints! I also have carpel tunnel in both hands, my knees are all loosey-goosey and my feet always feel like they’re going to break when I stand up. Oh and my hips are always burning and it feels like a horse kicked me in the junk. TMI? Maybe, but there you have it.

Only five more days to go! Unless she decides to come before then. I can’t believe we’re going to have a little baby in five days! I want to see her face! Hopefully I’ll have a better recovery this time around and once I’m healed up I’ll be focusing on lots of core exercises to get my stomach muscles feeling better. I need to make sure I get myself in shape for the kiddos. No more laziness! No more excuses! Emmett needs his mama to be able to lift and carry him everywhere! I need me some muscles.

And this will most likely be the last post until after baby gets here. And then I will have two cute kiddos to post photos of! :)


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September 19th

That will be our little girl’s birthday. I’m scheduled for a c-section that morning – unless of course she decides to arrive before that. We’ve known the date for a while now and I’ve been pretty mum about it. Mainly because I’ve had a really hard time deciding what to do, what I think would be best, etc. I really wanted to have a vbac (vaginal birth after caesarean) but at the same time I really don’t want to go through what I went through with Emmett again.

My labor and delivery with Emmett was a difficult one. Labor was about 16 hours and I progressed pretty normally and to me that was the most normal part of the entire experience. The pain was horrendous, (anyone who ever says “you forget how painful it was!” Is completely full of garbage… or they had an epidural from the start, or labored for 4 minutes and sneezed their baby out) most of those 16 hours was drug free. I think I opted for something or other when I was 14 hours in to take the edge off a bit but it definitely didn’t take the pain away.

Then I pushed for two and a half hours and no Emmett. He had descended into the birth canal but got stuck. They told me they were going to give me an epidural and try a forceps delivery. I was NOT happy about that. I didn’t want an epidural, I didn’t want forceps, but I was so beside myself with pain due to the back labor because of the position he was in (found out all about back labor the hard way, let me tell you) and it just all happened so quickly. Forceps didn’t work. He was stuck. They basically had to shove him back up and do a c-section. Something else I didn’t want but what can you do, he was stuck and needed to come out.

He was 8lb 9oz when he was born, so he was a good size. Not overly huge, but I guess my small frame just wouldn’t cooperate with his size. Which, you know, makes me feel shitty and inadequate. It sucks to feel like you’re incapable of doing something your body is supposed to know what to do. Labor and delivery took about 20 hours before all was said and done. The forceps cut Emmett’s face up, which really added insult to injury. His left eye was cut on the corner which made it swollen shut, he had two cuts on both sides of his jaw and on top of his head. Of course how this all played out made us wonder if this is what caused the seizures to start. But knowing what we finally know now, it’s highly unlikely. We’ll never know what caused the pvl which resulted in the seizures, visual impairment, developmental delays, etc etc.

So, you see, I really don’t want to go through nearly a full day of laboring only to have a c-section in the end again and feel even more disconnected from the experience. This baby is apparently going to be a good size like Emmett was, so it makes me really hesitant to try for a vbac. I did get the doctor I wanted for the c-section, so that makes me feel  a lot better about the whole thing. But now if I go early, there’s no way of knowing what doctor will be on call. And it really better not be the doctor that delivered Emmett. I have lots of complaints about that one but I definitely don’t need to hear, “No offense, but you look like shit” again while I’m in recovery. Yeah, she said that. If I hadn’t have been so busted up I would have knocked her on her ass. I really didn’t need to hear that after all I had just been through.

I hear that a scheduled c-section is much easier since you’re more rested and recovery is also a lot easier the second time around. So here’s hoping for a better experience this time. Recovery with Emmett was really rough and I think that was mainly due to not being able to actually rest. He started having seizures when he was just a day and a half old and was in the NICU for a week while a battery of tests were being run on him. I think I can say that was the most emotionally exhausting time of my life. I was trying to wrap my mind around being a new mother, learning how to breastfeed while he was hooked up to tons of wires and monitors, crying constantly about what was happening to him and why we weren’t getting any answers, in and out of doctors offices from the get-go, it was just never ending. So recovery for me took a lot longer because I basically had no time to recover and rest. I just want to be able to come home and enjoy the newborn phase.

But, I really desperately wanted to have the experience of seeing the baby being born and placed directly on me. It makes me sad I’ll most likely never experience that. I talked to my doctor about it and there’s a mirror they can place in the operating room so I can see her pull the baby out. Wiith Emmett I saw nothing. I was so out of it and only saw his foot when they swung him around the curtain for me to see before they whisked him away to clean him. They did place him on me shortly after to hold while they started to do their thing – put me back together and what not. But again, I was just so out of it. I remember nothing after they brought us to our room that night. I hate not remembering my first night with Emmett, because that was the only night he was in our hospital room until he was brought to the NICU.

This time around, we are going to hold off on visitors until we’re ready. We want to have time to be a family and get photos. We don’t even have a photo of the three of us together after Emmett was born! None with me and Emmett, or Ryan with Emmett. I’m so sad about that. Ryan was busy taking photos of Emmett with all the family members that had been waiting in the waiting room all day while my surgery was being finished up and everything was just a blur. All I remember is that Ryan looked really cute wearing the scrubs and I am determined to get a photo of him this time around holding our baby girl while wearing those scrubs!

So I guess we’ll see what happens. If I happen to go into labor early and things progress quickly, we’ll see what the doctors think and how I’m feeling about it. Maybe she’ll just want to torpedo her way out and I’ll get my vbac in that case! I’m 37 weeks right now, full term, and have been having braxton hicks like crazy. They sometimes last for hours! The doctor said it could be that she’s getting ready to come early or that my uterus is just maxed out and protesting. I feel pretty maxed out, that’s for sure.

Well, there you have it. An official birth date. One that she may not get to pick herself but one that will be hers regardless and just as special. I can’t wait to see her face and see if she will look how Emmett did when I first saw him. Will she be blonde? Brunette? Blue eyes? Brown eyes? Hazel eyes? Thankfully I vividly remember seeing Emmett for the first time. I basically yelled, “HE’S SO CUUUUTE! ….AGGH, HE HAS MY NOSE.” As much as I hate my nose, I think it suits him nicely. :)

And here’s the baby belly full term at 37 weeks! This shirt has been with me since the start! I actually took my first belly shot wearing it. It’s pretty much been my ‘go to’ shirt and the most comfiest.

T-minus 15 days until the WildMan will officially be a big brother!

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What A Month

I started to write this entry over two weeks ago and never got around to finishing it.

As most of you know, Emmett hadn’t been responding very well to going back on vigabatrin and transitioning off of the ketogenic diet.

Here’s what happened:

  • After the first dose of vigabatrin (that was too high) he was crying and inconsolable for about 24 hours
  • We lowered the dose and then he became crazy hyper, like Emmett on speed. Our early intervention worker saw him and and was like “whoa.” He wasn’t sleeping and stayed up at one point for 17 hours straight.
  • Another call to the neuro and he said to only give him the vigabatrin when we noticed the generalized tonic seizures. That wasn’t a good idea because he was always on/off/on/off of the shit.
  • Emmett had stopped wanting to eat or drink, either a result of the vigabatrin or not being used to more carb and sugar in his diet. This went on for almost 2 weeks.
  • I tried contacting the dietician at the IWK but she was on vacation. I was supposed to be able to contact the pediatric neurologist dietician and when I tried that I got her voice mail saying she was gone until August as well.
  • Insert copious amounts of expletives here
  • He was always throwing up at night while we were trying to get his meds down. He had been holding his liquids/food in his mouth and the meds were dissolving and they taste AWFUL. So that is most likely what made him puke. And also because by this point he was too ketotic which made him ill.
  • We took him to the ER on the 30th to make sure he wasn’t dehydrated because he basically hadn’t eaten, drank or peed very much in two days. His blood sugars were low because he wasn’t eating his full meals (which had just been his ketocal formula again) or drinking enough water. Thankfully he wasn’t dehydrated, but I knew he was too ketotic since we test his urine all the time to keep that in check.
  • The pediatrician we saw in the ER told us to stop the vigabatrin to see if that’s what’s causing him to not want to eat or drink. He also said we could probably start him on the new med, valproic acid, while we’re weaning him off the diet. But our neuro told us he wanted his ketones to be pretty much non existent before we start, and even though we had been reducing the fat ratio in his diet, his ketones were still through the roof because he wouldn’t eat or drink.
  • Another call to our neuro to talk about this since he wanted Emmett to be on vigabatrin. I told him what the pediatrician told us and he basically agreed to go along with taking him off the vigabatrin and starting the valproic acid. I questioned about starting the new med even though his ketones are high, and his main concern was his carnitine deficiency he had because of the diet. He wanted us to start the new med but we didn’t. I wanted to talk to our other neuro at the IWK to get a second opinion.
  • I called her office and OH GUESS WHAT! She’s out until August. Her secretary said that basically the neurology department is on a 2 week summer closure. How can they even do that? Let’s all take our vacations at the same time, wouldn’t that be funny? HAHAHA!
  • No.
  • Insert copious amounts of expletives here.
  • Emmett became shaky because of the low blood sugar so we tried give him some orange juice to try and help level him out but that made no difference.
  • Once we stopped the vigabatrin and he still wasn’t eating or drinking we brought him back into the ER on the 3rd. He was still vomiting his meds and becoming more lethargic and ill because he was too ketotic. There was no way I wanted to start him on a new medication while he was too ketotic. He needed to stop feeling nauseous and keep food down before I agreed to that.
  • We ended up being sent home around midnight and was told to come back Sunday morning on the 4th to get bloodwork done.
  • We met with an awesome pediatrician that was on call and she admitted him right away.
  • They hooked him up to an IV and after about 24 hours we finally started to see his ketones dropping and on day 2 finally started to eat and drink again and we then started him on valproic acid.
  • We were in the hospital for 5 days before we were given the green light to go home.
  • The IV is just what he needed and so far things have been going well at home. He’s been on the new medication for seven days and can take up to ten days before it becomes completely effective.

So, yeah. The past month has been a doozy. Hopefully things will stay settled so I don’t go into early labour. Our little family needs a little break for the little miss arrives. Which is NEXT MONTH, by the way.

We have been really enjoying not having such a strict routine/time frame to follow now that he’s off the ketogenic diet. We went out yesterday and I said, “Ryan! It’s 2:30 and we don’t have to hurry home to give him dinner for 3:00!” We were at the mall a while later and Ryan said, “Bubby! It’s 3:00!” It’s been so nice letting him sleep when he wants to sleep and wake up when he wants to wake up. He still needs his meds in the morning and in the evening but we have some time to work with so it isn’t as strict. One morning he slept until 9am! Another morning 8:30am! And he’s taking less naps during the day since he’s getting more sleep at night. He’s been a little apprehensive about a lot of foods but that’s to be expected. He isn’t sure about a lot of the flavors because the keto diet was really bland and they were such tiny portions. He’s also been super hyper since we’ve been back home and I’m not sure if that’s due to the sugar in his diet now or the new med. Could be a combination of both, who knows.

The Safety Sleeper bed also arrived! It’s put together, we’re just waiting on his bed frame/set to arrive next week. I’m anxious to see how he does with sleeping in it.

And now for some cute! These were taken 2 weeks ago in the middle of the chaos, and right before Emmett started to feel really sick. We hadn’t taken a family photo since the fall so I was determined to get one.

This first one cracks me up… Emmett and his wandering hand!

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I don’t know if it’s my pregnancy hormones or what, but when I first saw this last photo it made me cry! It’s such a cute picture of Ryan and Emmett. It’s just so genuine. Love it.

I can’t believe baby girl will be here NEXT MONTH.

I called to make my first obstetrician appointment (which is already tomorrow), and wouldn’t you know, the doctor I requested isn’t there this week. I could choose between two doctors which just so happen to be the two that I like the least. One being the one that delivered Emmett whom I vehemently denied. So I decided to go with the other one who doesn’t have any bedside manner. I really wanted to see who I requested so I could speak to her about my options and just have a good conversation about it all. Hopefully I’ll still be able to have a good conversation and discuss what’s been going through my mind and get some good advice.

A big thank you goes out to everyone that was there for us during this trying time. All of your thoughts, well wishes and prayers are very appreciated. Our WildMan is doing better and hopefully it continues. We need some downtown to get ready for Emmett’s little sister!


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Exhausted.

It’s been over a month since my last update and I’m not sure where to start.

A few weeks ago Emmett had his 24 hour EEG to see if he would possibly be a candidate for a type of brain surgery that could help stop his seizures. But he isn’t. His seizures would have to all stem from the same area and they don’t. They are coming from both sides of the brain and branch out over his brain. I feel both relieved and defeated at the same time. Relieved that we don’t have to make a very difficult decision to put our little boy through brain surgery, and defeated because it’s something else that could have helped him that can’t. Our list of things that might help him seems to be growing shorter and shorter.

His seizures have also changed. Also, not every kid that has pvl has epilepsy, it depends on where the damage is and if the grey matter of the brain is affected. Which it is for Emmett. And his injury happens to be in the area of the brain that’s responsible for vision. The Dr. said that’s why he’s a more “severe” case. I didn’t like hearing that word very much.

We were able to get him down from 4 medications to 2. We successfully weaned him off the vigabatrin but new seizures surfaced once that medication was out of his system that had initially been suppressed. He’s not having the cluster seizures anymore that last between 10-15 minutes (which has been GREAT) but now he’s having generalized tonic seizures, and they’re scary. A few days ago when he had one he started to turn red and I’m not sure if he had stopped breathing for a few seconds or not. I’ve read that some people can lose consciousness during these (he hasn’t yet) and when the chest contracts it makes breathing difficult. The seizures take him off guard and he gasps and breathes funny. His eyes roll up, arms come forward and stiffen and his entire body tightens and shakes. Our neurologist wanted to up his diet to the 4:1 ratio to see if that would help things, and it seemed to for a bit. For about two weeks after he had the EEG things were going really well. His seizures had calmed down, he was visually attending more and holding his head up and wanting to try and sit up more. But now they’re getting worse again and the fat ratio is maxed out. I really, really hate when things go well and then get worse again. Every time he does well I wonder how long it’ll last and get really emotional when his seizures get worse again.

I spoke with our neuro yesterday and he thinks it would be best if we take Emmett off the ketogenic diet to try another medication called valproic acid. He can’t be on this particular medication while on the diet. And since he has a carnitine deficiency, because of the diet, we need to put him back on vigabatrin (I may have said a lot of bad words about that) so his seizures don’t get even worse while we wean him off the diet. He needs to be completely out of ketosis before we start him on the new medication. The valproic acid can also cause the phenobarb to become more potent, so we need to really watch him and make sure he’s not extremely lethargic and sleepy. If that happens then we’ll have to lower his dose of phenobarb.

So, right now he’s currently on three medications again plus the diet. And soon he will be back on four !@#$’ing meds. We started him on the vigabatrin last night. The neuro wanted us to give him 500mg at night and 500mg in the morning. I asked him if we should wean him back onto it, since that’s what we did when he was much younger and started it. The neuro didn’t seem to think starting him on 1000mg a day would bother him since he’s older and bigger now.

HAH!

Today poor Emmett has been so beside himself and just absolutely inconsolable. Everything that usually makes him laugh or smile sets him off into a fit. I couldn’t even touch him or talk to him, it made him worse. I made another call to the neuro and he said the dose was too strong for him after all. He didn’t want me giving him any vigabatrin tonight, or tomorrow, unless we start to see the generalized tonic seizures pop up again. Today, he hasn’t really had any, just a few small ones. He went from having 10-15 bigger seizures a day to a handful of very subtle ones.At least we know the vigabatrin stops the generalized tonics, I guess. But he was on it for infantile spasms to begin with, and doesn’t have those anymore. When those seizures become bigger again I’ll only be giving him 500mg at night and that’s it. Hopefully that will help those seizures enough until he’s off the diet and on the new medication. But, those cluster seizures might come back since he’s back on the vigabatrin. Certain seizure medications can actually make other seizures happen while they stop different ones. It’s maddening.

So it begins. I hate this.

I’m feeling so defeated, stressed out, upset and nervous. I’m really nervous to wean him off the diet because I don’t want his seizures to become completely insane. I don’t want him back on vigabatrin because that’s the one that causes permanent vision loss. And since he has a visual impairment already, it’s upsetting that he needs to go back on it. It was like a haze was lifted off of him when he was done with the vigabatrin. He was actually starting to communicate with us. He would whine or cry when he was hungry or over tired… it was so nice to kind of be able to figure out what was wrong. I’m really hoping we see good results with this new medication and then we can hopefully wean him off other meds again, and not have new seizures pop up.

HOWEVER! If we can get him off the diet successfully and have his seizures (somewhat) controlled with the valproic acid, he can start to eat normal foods again! Ryan and I have already made big plans to take him out to Menchies for frozen yogurt, I’m going to bake him a belated birthday cake, he can actually eat at the same times as us, and we can start to teach him how to feed himself again! And he can have fruit. So much fruit! He loved his fruit. And there will be no more forcing food down his throat when he’s sick, no more waking him up to eat if he’s napping, we’ll be able to travel much easier and not have to always rush home at specific times so he can eat… so there are lots of positives if this can work out.

I’m so tired. Completely emotionally wiped out. I imagine the pregnancy is magnifying all of that. I’ve been having a really hard time trying to enjoy this pregnancy, too. I question every move the baby makes. The doctors had said Emmett may have had seizures while I was carrying him, so every time I feel her move I feel anxious, nervous, nauseous… not how I want to feel at all when I feel my baby girl moving around. This pregnancy has been identical to my pregnancy with Emmett. Even down to the movements. I’m very anxious to meet her yet almost terrified at the same time. I’m trying not to worry, really, I am. But it’s one of those ‘easier said than done’ things. It also doesn’t help that most newborn movements look like seizures. When friends of mine post videos on facebook of their newborn, I see movements that make my heart sink because it looks like seizures. I’m starting to be scared that I’ll just be a wreck when she’s born.

Another frustration – Now that I’m 30 weeks I’m having a difficult time carrying and lifting Emmett. I can’t do everything with him that he needs right now. Just carrying him wipes me out because he doesn’t help support himself at all, he’s just dead weight. It’s especially difficult when he resists being held and arches back. It doesn’t feel very good on my tummy. Snuggling him is even uncomfortable right now and that saddens me so much. ANd I’m not sure if I’ll be getting another c-section or not, but the thought of having to recover from that surgery again sickens me. Especially since I won’t be able to hold Emmett for a while. Thankfully Ryan will be home for a few months so he can take Emmett to all his appointments and therapies. If I do get a c-section again, I’m hoping I’ll be able to recover more easily this time around. With Emmett, he had his first seizure at just a day and a half old. I didn’t have the experience of having my newborn baby at home. There was no resting peacefully in bed while I nursed. We were constantly in and out of the NICU, ER and doctor’s offices. Hopefully this time around I will be home with both of my babies!

This isn’t a very happy update, I know. But this is what I’ve been going through lately and how I’ve been feeling. Hopefully my next update will be on the chipper side of things.


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Shopping Carts and Beds, OH MY!

I’m really excited because I’ve found some special needs equipment recently that would make some things so much easier (and safer) for us!

Emmett is growing to be quite a tall boy and since he’s not your typical 2 year old, we’re facing quite a few challenges already. I came across Caroline’s Cart today. This is so awesome, you have no idea. I was just telling Ryan a few weeks ago that I wished stores had carts available for children with special needs. Since Emmett can’t sit up on his own, we can’t put him in a regular shopping cart. Usually I have to do groceries by myself in the evening, or Ryan will come with me on the weekend while he pushes the cart and I push Emmett in the stroller. It would be absolutely fantastic if our stores here could get on board with this. I want Emmett to be as involved with things we do as much as possible, and this would make grocery shopping so much easier for me to get done during the week. That way we can do other things as a family on the weekend instead of groceries! There’s a spec sheet on the website so I had Ryan print a few copies out. I’ll be bringing them to Sobeys, Superstore and Walmart and hopefully talk to the managers about it. I’d like to try and get this out there so other families can see that this is available and they too can speak to store managers about it. Might be even worth contacting some newspapers to get the word out! Seriously, this would help a lot of families. Caroline’s Cart also has a facebook page so pass along the info to someone you might think may really benefit from these!

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Another thing we’ve been looking a lot into lately are special beds for Emmett. Since Emmett loves to get up on all fours and doesn’t really have spacial awareness, he launches himself forward or sideways. Or when he’s feeling extremely adventurous, he gets right up on his knees and flings himself backward… or forward… or sideways. And does these acrobatics at 3am.  I bought some kitchen chair cushions to tie around the top of his crib so he can at least launch himself into those. The crib is still sidecarred to our bed, so when he does feel like doing this in the middle of the night I can catch him before he smashes himself around and settle him down.

There are two beds that I really like. The first one is The Safety Sleeper!

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Bed-Blue-Side

Bed-Sand-Side

It’s essentially a zippered tent bed that you slip a mattress through. There’s a great coverlet on it so when Emmett rolls to the edge, he can’t fall in between the tent and mattress. In the above photo, foam pads can also be purchased to cover the poles on the outside, which is something we would need for Emmett for sure.

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What I really love about it is that it’s portable! It would be so great when we travel for his appointments, visit family (which doesn’t happen very often because of sleeping situations) or go on vacations. All we need is a blow up mattress to throw in it! The photo below shows one in a hotel room.

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See? FANTASTIC! We need our WildMan to be safe at night. This bed, after all said and done, will probably be around $2500. We’re currently looking into seeing if our insurance will pay for part. If they will, Social Development might also be able to help pay for some of the cost as well. Just waiting on a letter from our pediatrician “proving” why Emmett needs this. Fingers crossed!

The other bed is a Sleep Safe Bed. This one is insanely expensive. The starting price is $8500… I know, right? Craziness.

I love that the sides are high and can also be padded.

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And that it comes in these fun colors!
SleepSafe-2-Multi-Color-OPEN

However, this one obviously isn’t portable.

I think we’ll be aiming for the tent bed first. That one should hopefully last him for a long time and, if need be, we can look at purchasing the larger bed for him when he’s older.

Thank goodness for the internet, seriously. I’m always looking for things that will make things easier for us and for Emmett and finding the tent bed and these shopping carts made me so happy! Let’s just hope both can become a reality for us soon. :)


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A Birthday And A Diagnosis

At 7:31pm tonight Emmett turned 2 years old! And yesterday at 1:30pm we were given an “official” diagnosis.

Periventricular leukomalacia (PVL)

This. This is what Emmett has. This is what I’ve been repeating in my head since yesterday, over and over again.

Taken from MedLine Plus:

Periventricular leukomalacia (PVL) is a type of brain injury that affects infants. The condition involves the death of small areas of brain tissue around fluid-filled areas called ventricles. The damage creates “holes” in the brain. “Leuko” refers to the brain’s white matter and “periventricular” refers to the area around the ventricles.

PVL often leads to nervous system and developmental problems in growing babies, usually during the first to second year of life. It may cause cerebral palsy (CP), especially tightness, or increased muscle tone (spasticity) in the legs.

Babies with PVL are at risk for major nervous system problems, especially involving movements such as sitting, crawling, walking, and moving the arms. These babies may need physical therapy.

A baby who is diagnosed with PVL should be monitored by a developmental pediatrician or a pediatric neurologist, in addition to the child’s regular pediatrician.

Taken from Wikipedia:

Two major factors appear to be involved in the development of PVL: (1) decreased blood or oxygen flow to the periventricular region (the white matter near the cerebral ventricles) and (2) damage to glial cells, the cells that support neurons throughout the nervous system.[5] These factors are especially likely to interact in premature infants, resulting in a sequence of events that leads to the development of white matter lesions.

The initial hypoxia (decreased oxygen flow) or ischemia (decreased blood flow) can occur for a number of reasons. Fetal blood vessels are thin-walled structures, and it is likely that the vessels providing nutrients to the periventricular region cannot maintain a sufficient blood flow during episodes of decreased oxygenation during development.[2] Additionally, hypotension resulting from fetal distress or cesarean section births can lead to decreased blood and oxygen flow to the developing brain. These hypoxic-ischemic incidents can cause damage to the blood brain barrier (BBB), a system of endothelial cells and glial cells that regulates the flow of nutrients to the brain. A damaged BBB can contribute to even greater levels of hypoxia. Alternatively, damage to the BBB can occur due to maternal infection during fetal development, fetal infections, or infection of the newly delivered infant. Because their cardiovascular and immune systems are not fully developed, premature infants are especially at risk for these initial insults.

It is often impossible to identify PVL based on the patient’s physical or behavioral characteristics. The white matter in the periventricular regions is involved heavily in motor control, and so individuals with PVL often exhibit motor problems. However, since healthy newborns (especially premature infants) can perform very few specific motor tasks, early deficits are very difficult to identify.[9] As the individual develops, the areas and extent of problems caused by PVL can begin to be identified; however, these problems are usually found after an initial diagnosis has been made.

The extent of signs is strongly dependent on the extent of white matter damage: minor damage leads to only minor deficits or delays, while significant white matter damage can cause severe problems with motor coordination or organ function. Some of the most frequent signs include: delayed motor developments, vision deficits, apneas, low heart rates, and seizures.

Additionally, infants with PVL may not be able to assume the same positions for sleeping, playing, and feeding as premature or full-term children of the same age.[10] These developmental delays can continue throughout infancy, childhood, and adulthood.

Premature infants often exhibit visual impairment and motor deficits in eye control immediately after birth. However, the correction of these deficits occurs “in a predictable pattern” in healthy premature infants, and infants have vision comparable to full-term infants by 36 to 40 weeks after conception. Infants with PVL often exhibit decreased abilities to maintain a steady gaze on a fixed object and create coordinated eye movements.[12] Additionally, children with PVL often exhibit nystagmus, strabismus, and refractive error.

Occurrence of seizures is often reported in children with PVL. In an Israel-based study of infants born between 1995 and 2002, seizures occurred in 102 of 541, or 18.7%, of PVL patients.[5] Seizures are typically seen in more severe cases of PVL, affecting patients with greater amounts of lesions and those born at lower gestational ages and birth weights.

Another common but severe outcome of PVL patients is the development of epilepsy. The link between the two is not entirely clear; however, it appears that both genetic and early environmental factors are involved.[18] One study estimated that 47% of children with PVL also have epilepsy, with 78% of those patients having a form of epilepsy not easily managed by medication.[19] Many of these affected patients exhibit some seizures, as well as spastic diplegia or more severe forms of cerebral palsy, before a diagnosis of epilepsy is made.

So, there you have it. Lots of info, I know. If you made it through reading that, thank you.

Both neurologists seem to agree that this happened sometime during fetal development. That is more of a rarity. PVL most commonly occurs in premature and low birth-weight infants. I know I haven’t gotten around to writing Emmett’s birth story here yet, I’ve been meaning to do that. In short, Emmett was born at 41 weeks and was 8lbs 9oz. I laboured for 18 hours, pushed for 2.5, attempted (and failed) forceps delivery and then cesarean. It wasn’t a very easy labour and delivery, to say the least. Which is why I’ve been hesitant to write about it. Even though it happened 2 years ago now, it’s still very fresh in my mind like it was yesterday. And when I really get to thinking about it, I feel anxious, nauseous, sad, angry, etc…

Usually PVL is caused by decreased blood flow or decreased oxygen flow to the back of the brain. She also mentioned it could have been caused by low blood sugar, too. I also came across this, “Additionally, hypotension resulting from fetal distress or cesarean section births can lead to decreased blood and oxygen flow to the developing brain.” As far as we know, Emmett did not show any signs of fetal distress. But again, and I’ve mentioned it before, I wonder if something was missed.

This isn’t Emmett’s MRI scan, I should have asked if I could have taken a photo, but at least it will provide you with a bit of a visual.

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The white areas on both sides, where the arrow is pointing, is the area of where the scar tissue is located. Emmett’s was not that bright white or large, however. But those areas are supposed to be dark/black.

Since getting the diagnosis, I’ve been feeling surprisingly relieved. What’s been making us question everything for the past two years finally has a name. There’s an explanation. I can’t begin to tell you how difficult it was not knowing what was going on, what was causing his seizures, his visual impairment, his developmental delays… it just feels like a huge weight has been lifted. It feels like I’ve just exhaled for the first time in 2 years. We know what we’re facing and we know that what we’ve been doing for Emmett has been what he needed. We just need to continue his therapies to make him be the best he can be!

Today, I am so thankful for that little boy. I am so thankful to share him with Ryan. I am so thankful to have a husband that absolutely adores his little boy. Ryan is absolutely wonderful with Emmett. I’m thankful that we finally have an answer to the endless amount of questions we’ve had. Last year I felt a little sad on Emmett’s birthday. I kept going back to when he had his first seizure. To the NICU. To the ER. Back to the NICU. Trying to recover from a cesarean. Test after test with no answers. Sad that I had no idea what was in store for any of us. Even though the memories of his birth are still fresh in my mind, this year it feels a lot sweeter. I’m proud of how far I’ve come, how far we’ve all come. Emmett works so hard, I’ve never seen such determination. And I know there are some very trying times ahead, but I can’t help but feel so thankful for it all tonight.

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