Olivers Obstacles

In our UCD community, there is a little wee one by the name of Lynlee who has been called out today in hopes for a new liver.  What a wonderful Christmas gift… The threat of ammonia is scary, and knowing full well that the signs of rising ammonia are fluctuating… Some children tolerate high ammonia levels, which in return cause more brain damage, and some children are easier to spot when these levels are rising…

It’s an ongoing battle to ensure our little one’s are protected neurologically… But with the ongoing threat, and toleration of such poison, there isn’t a great deal we can do aside from getting the most immediate medical attention, or the alternative, a liver transplant.

Oliver gave me quite a scare last Sunday when he began to wobble back and forth, unable to hold his bottle without dropping it, and falling over. His little eyes would drift to and fro, and he appeared to be disoriented and confused.. I thought for sure with this nasty cold he was suffering from high levels.  I called ahead to the hospital to ensure they knew we were coming.

This visit was a wonderful one… We got in and got checked, and the ammonia came back at 37…  37!?  I couldn’t believe it when I heard these results. What could my little verbie be up to in such a state of confusion?  It was then that I realized Oliver was just being himself… The disability I thought would appear later in life shows very real in his actions and behaviour.

It’s tough to see this go on, and wonder what is happening inside such a tiny body. But instead of watching him so closely, I now keep in mind that Lethargy and Vomiting may be the sign we need in order to get him to where he needs to be.  It’s all trial and error.. What we think we know and what we come to find are so close together it can be confusing at times…  I’m positive though that the next time around I’ll have a better grasp on what is going on with Oliver.

We completed our follow up appointment with metabolics, and after reviewing and assessing him, everyone was pleased to see him alert and full of smiles. Ammonia levels were at a stand still from SUnday… 37.  He’s now 25 lbs of chubby happiness and has 4 teeth poking on through followed by tonnes of drool

We’ve received a call from our potential donor and we’re looking at the first week of January to do the follow up work and assessment, all to ensure whether this is indeed a good match.  I’m excited and scared, but most of all excited…  With Christmas around the corner, and the New Year ahead… We’ve endured a long and hard road this first year with Citrullinemia. Thankfully we’ve not had an episode, and can continue to remain stable until transplant.

I’m sending thoughts and prayers out to all my UCD mom’s and Dad’s.. Wishing everyone a Merry Christmas and a Wonderful New Year. Looking forward to a brand new year with so much ahead…  May you all be blessed with Happiness, Health and Success in the New Year.

It’s one of the issues I have with computers and websites and all that garbage. I don’t have the time to figure it out, and quite honestly when this site was built, it was with my now ex-husband.  Tech Guru.

For now, I’ve managed to post a little something here and there, and for some obligated reason I felt I needed to add to that, my apologies. Ha….  For an unattended site that I just cannot take the time to figure out..  Hell I should though… I did pay to keep it up. Something in me wanted to keep it going… Whether I touched base or not, whether it was informative or vague… it was Oliver’s.

We have other adventures to tend to, and we’re so busy with assessments and appointments, Oliver has consumed a wonderful chunk of time, and I take joy in the small things we do and the moments we have. With Gabriel around, the absolute bond    between those two is nothing I’ve ever seen. My eldest son is such a gentle, loving, and just wants to make you laugh kinda boy..  Oliver is ALWAYS full of smiles around him… Randomly at times I’ll see the two laughing Hysterically out of pure, motivation of love, and it makes me laugh right to the pit of my gut… How sweet, and so innocent.

I love these moments..

SO all in all… I have to admit that I really don’t have any clue when it comes to website management. And choosing to understand the lingo is a whole other paragraph to reiterate lol.. So for now I’ll continue to post posts, and maybe actually take a moment to write as opposed to feeling rushed!

I found myself in a position where I was unsure of what to do, unsure of what to give, and how much. I went with my ultimate gut feeling.. Pedialyte and DUOCAL.. A mixture of the two would supply extra calories, minus the protein..  It’s the fever formula that is given when children are unable to tolerate their regular formula, when children have high fevers and vomiting.  Oliver didn’t experience any of this… He had the worst cold I’ve ever seen him have. Runny nose, mucous buildup, and just plain irritable.

I turned to what I thought would be best in this situation… The fever formula. Packed it into him Saturday and Sunday, and started him back on his regular formula as of today.  Of course I contacted the dietician immediately to touch base and get a bit of feedback on how I’ve handled things over this weekend.  So far she has given me the thumbs up…  I’m relieved to know that in this kind of scenario, I did what I thought was right.

It’s scary….   On one hand, I don’t want to drive 1 hour and a half if it’s not necessary… But again I’m afraid to take that chance and keep him home…  I chose to keep him home and take care of him with what knowledge I had, and that was very little..I’ve taken him in due to a cold  before on a few accounts and his ammonia had only been high the one time…  The threat of brain damage occurring is a scary thought, and it’s a lot of stress to endure when you’re juggling the pros and cons of a UCD disorder.

No matter what… we continue to learn more and more each day, but as Oliver grows more and more each day, his behaviour changes along with it.  The typical signs of high ammonia don’t even seem relevant at this point…  I know of a child who tolerates high ammonia levels, and the thought alone is scary because what we think to be normal behaviour could be just the opposite.. It could very well be the rising levels of ammonia.

This is always difficult to determine…  All children with UCD’s are different, each one will display different characteristics, and tolerate different levels of sickness..  With this particular cold, Oliver was himself most of the time..  He slept a little more so, but I understand this to be the body’s way of repairing itself..   If he were to sleep other than the times he normally went to sleep at, I’d be a little cautious I suppose…

He tolerated feeds, had no spells of vomiting, and was interested in still eating solids.. So I FELT ok with everything..  I just felt incredibly unsure…  Whether I was giving him what he needed or whether I was just making things worse..  I’m glad to know I did the right thing.

Aside from the symptoms… I mentioned before that Oliver has this crazy eye thing where he looks like he’s trying to cross his eyes and split them in either direction?  This bothers me….  It bothers me because I never know if this is a sign of rising ammonia…  It appears to be similar to a baby who’s ready to fall asleep, and their eyes go funny.. ready to drift.

This could very well be the neurological damage that took place when he was first diagnosed, but it hasn’t seemed to have corrected itself… In fact it almost appears as though it’s getting worse…  The doctor told me to video tape it.. But it’s SO difficult to do…  When it happens it happens for a split second.. By the time I get the camera rolling he doesn’t do it anymore…  It seems like he’s trying to focus, but his eyes appear to be looking in opposite directions.. Its so strange, and THIS is what has me wondering what I’m even looking at or if it has any bearing on his current condition.

Everyday is a new learning curve..  I try my best to keep up with Oliver, to assess him without panic, and make conscious decisions accordingly. But when there is a lack of information, it makes it harder to judge and make decisions as such because what else do I have to refer to?  The information handed down from doctors is just as limited. There has been little research done on UCD’s and as rare as a condition as it is.. I don’t think there will be a break through at any point in time… It’s why everyone is alternatively proceeding with transplant or continuing treatment without.

A blessing and a curse all rolled up into one little cute bundle….

I hope we hear more word through TGH… I’d like to have an idea of when and what to expect with transplant.. This waiting game is killing me!

Till then, Oliver sends his slobbery kisses. xoxo

But in that short period Oliver’s made some major gains.  We’ve completed the development assessment.. To determine where Oliver is “at” in gross motor skills. Well it is evident there is some delay, it just baffles me that he’s in the 5th percentile considering where he is and how far he’s come…  It’s alright…  He doesn’t know where he is, and through his actions and strong willed character he continues to overcome obstacles everyday.

Crawling is a skill… Oliver is well on his way to becoming a pro at it. Whether he shuffles across the floor or pushes himself backward, or even stands on all fours and rocks forward and backward…. He’s trying.  So hard in fact his temper flares when he can’t move in the direction he wishes to go… So KerPlunk he goes! And begins doing the floppy worm haha..  Get him going good enough and he’ll do the funky chicken!

Teeth teeth and more teeth…  November seemed to be the month where 2 bottom one’s pop out and 1 top one…  Munching on everything he can get his tiny hands on… I’m relieved. From cheesies, to yogurt, banana’s and specially designed cookies… Oliver is eating up a storm. Not taking the bottle AS much anymore, and understandably so… There’s a lot more things he can do with his mouth besides suckle… He can now gnaw on naners, and chew on cookies! It’s so wonderful to see him excited to shove everything in his mouth.  The gag reflex still appears from time to time… Especially when something tastes so good, that you just have to get the WHOLE thing in there!

We had our trip to the MRI.. Still awaiting those results. Considering the past, I’m sure there has to be great improvements.. I’m hoping they’ll come back and say he’s got the potential for a normal life. Now we all know “normal” isn’t going to necessarily be what WE call normal. The brain may be malleable, but the damage will still be present.. Regardless of the outcome, his actions speak far louder than any piece of paper…  He’s the miracle man!

We’re awaiting word for our donors consultation.. I’ve touched base with the hospital to ensure they’ve received the questionnaire, and if so… We’d like to proceed with doing the work up..  I’m thinking of holding a fundraiser, but don’t know really where to start…  It’s not going to be financially easy… I’ll pray things work themselves out. After all… we’ve made it this far

As the days pass on by, I find myself growing more and more attached and in love with my little guy.. How happy he makes me by just smiling all the time… His laugh and his gummy smile, now filling up with scattered teeth is by far the best medicine for any drab day. Aside from the weather, the sun always shines under my roof…   As long as my little candle stays alit, the rain will be kept at bay.

Big Brother & Santa

Oliver has come so far in terms of development.. I’m just floored by how well he sits up! He’s begun rolling around on the floor and using those abs he’s built lol… I can’t tell you how elated I am…

We received a phone call from 5 counties, and they are a resource centre for children who have mobility issues, and motor issues…  Physiotherapy and occupational therapy have been set in place for Oliver. We have our first appointment this month.

I told the woman over the phone all of Oliver’s achievements thus far, and she even stumbled on the phone… I think she figured Oliver was going to be a challenge because he’s as old as he is and has not hit the milestones babies usually reach within the first year..    Yes it made me proud to boast of his newfound skill.

Novemeber 11 is Oliver’s immunization date… We need to wait one month prior to transplant due to the live vaccinations… Oliver’s immune system after transplant will be so low, he’d be unable to fight off any infection had he been immunized after the fact… So we have this in place…  I’m hoping transplant will commence after the christmas holidays.. Just one of those small requests I hope the team will take into consideration.

MRI has been scheduled for the 28th… We’ll be spending the night in Toronto to have Oliver assessed, hooked up to IV and ready to go… This will give the team a base line to work with. Oliver has had EEG scans that showed little to no brain activity when he was first diagnosed… NOW look at him!  I too am curious to know what these MRI images will portray. I’ve seen the last 2 and they both displayed permanent damage in areas of the brain especially the brain stem.. This may explain Oliver’s lack of coordination when learning to suck, latch and swallow.

Now we are on track and ready to roll….  literally

Hip Hip Hooray for Oliver and his Leaps & Bounds into a better life.. 

We made it… 1 year to the day…

I honestly thought by this time, I would have been celebrating a birthday alongside a tombstone…

I can’t begin to tell you all how proud I am of this little being who consumes my life, my time, my heart, my kisses and my hugs. There’s so much to celebrate today! He’s come from ammonia levels of over 1500… on life support to initiating his own breathing to waking up from his coma to undergo surgery twice in one week…and again to implant the necessities to allow easier access for the daily stuff we go through when we attend clinic…  He’s mastered the “suck, breathe, swallow and latch, then lost the ability… after 3 weeks of persistence he again amazed me by learning so fast…  I’ve been told that the “window of opportunity” to get Oliver to learn how to drink has passed.  Really?? It was just two weeks ago approximately… could be less, but either or… Oliver…. drinks from a bottle.  It’s obviously NEVER too late

Ollie hasn’t learned to crawl yet… still doesn’t quite sit up on his own.. He’s HAS however done FAR better than he did when he started out. Place him down on his bum and … KerPlunk! He topples over to the side  Now, he’ll use his legs to almost catch himself when he teeters off balance…  I’ve even seen him ONCE so far, use his abs to lift himself up…   Picture Oliver doing crunches to get himself on his butt lol… Such a ham.

This year has brought so many changes… I see how far we have come as a family, I see the improvements Oliver makes… The efforts he puts into things, how everyday he surprises me with something new.  I’ll never take for granted the time I have with my son…  Good & Bad days, it’s not easy taking care of an extraordinary child.. but it has it’s rewards. He’s a gift…. a privilege, and such joy to have. I cannot believe a year has rolled on by, and here we are…  Here he is!!

Today I held a costume party for Oliver.. To celebrate, spoil, and entertain our special boy of the day.. Give him love, and together celebrate the trials and tribulations, the past and the present..  It was a wonderful turn out, and Man oh Man did Oliver ever gobble that cupcake!!  I could NOT get that little man to sleep lol…  I think for the first time having a load of sugar thrown at you… YOU wouldn’t sleep either!  Ha….He just got SO excited with all the kids, and the commotion… It’s exactly what I hoped for on his day…

We’re blessed with an amazing group of friends and family, and thank each and every one of them for making this all happen, for supporting Oliver through his journey, and ensuring he’s had the best experience. We’re so grateful for all of you..  Thank you again for such a fabulous time! For spoiling Oliver and making the most of his day… He loves you so <3

The upcoming New Year is a time where we’ll proceed with a liver transplant…. (crossing fingers…. )   I didn’t want to go ahead and say much of anything because nothing has been confirmed..  But HOW DO YOU HOLD IN SUCH EXCITING NEWS?!  I can’t… so …  I mentioned before there were a couple people interested. Well… One person in particular has generously stepped forward, and we are in the midst of completing the follow up work to see if we have a match!  Again, I don’t want to get my hopes up…. But something tells me this is all going to happen and it’s all going to be alriight.  We’ll just cross our fingers….

We will be meeting with our potential donor tomorrow…. I know everything I want to say will come out with a big long hug…  A few tears, and maybe a few laughs…It’s truly a moment to treasure.  How unselfish of someone to give such a gift…   A stranger of all people….  Just willing to undergo surgery to give my son a chance at life?  There ARE no words to even begin to tell you what this means to me… WHat this means to Oliver, and how thankful we are… There just are no words.

We made it Oliver…  You battled a whole hell of a lot this past year, but honey, you made it! There are so many people who love you, who support and are rooting for you…  Keep up with the good work my boy, we’re SO PROUD of you!

Happy Birthday Oliver Elijah xox

Pictures will follow once I can upload them

I received the call from our team in Toronto, we are now officially registered with Toronto General Hospital to accept donations.  This is it……

(takes a deep breath)

I’ve been told I must keep my phone on at all times and be sure to answer the call when it rings….  There may be a chance Oliver will receive a deceased donor, and if that ever does happen we only have 48 hours to undergo the transplant.  All of this scares me to death… I keep telling myself it’s for the best, it’s for the best… Look at what is to come in the future..

Through everything Oliver has gone through, it HAS been one after the other… And for whatever reason, he seems to have been on the other side of the coin a great deal…  The skepticism is still there… I just don’t want to make any mistakes with my son… or his life.  I KNOW we are doing the right thing..

The waiting game begins.

Since our last post, Oliver and I made our trek into Toronto and battled out the worst of what I thought was going to be a REPEAT of our last visit…  However, this time around, there were no tests…. just assessments, discussions surrounding his current condition.

From a neurological stand point, Oliver is certainly at a low, and his ” tone issues”  stem from the damage incurred, but nonetheless, he shows amazing determination.  You can see he is a strong “healthy – looking” boy… And he’s strong alright.   At night time Oliver’s legs have to be strapped down as they become a distraction for him while trying to doze off to sleep….. He’s trying by moving his head back and forth, but these feet keep getting in the way! Lol… So he’ll cry and get upset… Once you tuck him in so to speak, he goes right to sleep.

But there are times when he’ll settle, and once you leave the room and look back.. He’d be doing sit ups. Literally… sit ups, touching his toes and all…And once he did so many, he would manage to get his one foot out, and when he attempted the sit up, his balance would be off kilter and kerplunk! The side of his head would hit the crib, and he’d let out a cry. Tuck him back in, and he’s right back at the sit ups…  It’s unusual, yet funny to watch. I should really video this one

So his issues surrounding his muscles, are that the brain is not properly sending the signals to the feet, allowing all the muscles in his legs, to contract and release contraction, distributing his weight where it should be… When we walk, there are muscles that contract and release at the same times, and so Oliver would end up with what we experience to be a charlie horse in his leg…   Like OUCH!!!

So upon not noticing these issues prior to our metabolic appointment, I’ve been given some tips and tricks to relieve the pain through massage.  It helps to massage before bed after a nice bath I love his little baths…..

So we reviewed some information and have decided that as a team, we would decide to enlist him. The go ahead has been given… We just need to update his vaccines. His Measles, Mumps, and Rubella, Varicella, and Hepatitis A and B all need to be given prior to transplant. The vaccines are live strains, and Oliver wouldn’t be able to take that on with a low immune system.

Autoimmune suppressant pills are what Oliver will eventually be taking each day to continue hiding his liver from his body, to avoid the risk of liver failure or rejection..  I’m sure that’s not the least of the medication they’ll be dosing him up with… That alone scares me. What if down the road he needs a kidney transplant due to all the drugs running in his system?  It seems unreal how the body can tolerate so much.  * sigh…….

So needless to say in a month’s time from the date of vaccination, we are ready for transplant…

Facebook has done me a great deal in terms of getting the word out there about Oliver’s Obstacles, and his condition. The support and love we continue to receive through friends all around is just enough if not more than enough to help get us through another trial…..

I’d be lying if I didn’t tell you that I’m scared as all hell.

Once we got the word that a living donation can be accepted, I posted this news on Facebook not thinking anything of it… Just throwing it out there thinking maybe someone would pass it along to someone who just may have the courage to step forward, and truthfully… I wasn’t in a hurry…  So far 2 people have taken it upon themselves to look into it. No obligations my friends… Absolutely NO obligations….  The fact they’re even taking the time to look into it is beyond anything words could describe…

In the midst of it all… Oliver will eventually be transplanted… I’m going to say it’ll be sometime in January…  I’d say more like somewhere around Dec 11, but truthfully, I’d rather wait till after the holidays if we could..  I know it sounds silly… But my family will actually be together…. And for once we could celebrate a holiday outside of the hospital. Cause both times Oliver was in…  *sigh…. No fun.

So The team wants to get Oliver in for an MRI… To get a baseline as to where he’s at and what the outcome turns out to be…  Somewhere for them start I suppose! *sigh…… Maybe THAT will defer him? There’s apart of me that wants him to NOT have the transplant, and then apart that wants him to live a much easier life, than the one he currently leads or will lead…  Sometimes I don’t know anymore.

It’s gonna happen fast…. I just know it.. I can almost feel it, it’s making me nauseous.. So…  moving on…  guess what!?

I have been trying to get oliver to feed from a zippy cup or what have you and I have had no luck.. I bought this new one from Nuby that has a mimic nipple, and voila… He went from CHOMP CHOMP to suckle suckle!! DO you realize how long it’s been since I’ve held my baby boy and fed him from a bottle????  God… he was 2 1/2 months when he last drank…  Man.. It was like a blast from the past, holding this gigantic baby and feeding him…   Then he’d push forward to sit up and *buuurp*! lol…  Ah…. The things we take for granted when we have “normal” kids…

Way to go Oliver!

Aside from his sniffles, Oliver seems to be doing fantastic… up to 7 grams of protein a day and happy as can be  Just around the corner is a certain someone’s first birthday! We’re having a costume party So much fun!!

Till then, Oliver sends his slobbery love  :) xoxo

Cause unlike the manic monday I had at the beginning of this week… I’m now being run off the roads and taunted by some weirdo who got off on spraying windshield wiper fluid at me, and kept slowing down and speeding up every time I attempted to pass….  Some people…  I wanted to smash into him so bad… I called 911 and dispatched a cop… It was unnecessary! There was construction all over the place… People were merging and allowing others to do so as well…  And I get stuck with the bored old guy who was blowing kisses at me… Asshole.

It wasn’t the day I was expecting to start out with…. Oliver however had a good day. With all the attention the nurses were giving him, he was just in his glory

So upon our appointment with the team members, I discussed Olivers uncontrollable screaming.. Dr G, asked whether he noticed any stiffening of the joints when he cries… and I didn’t notice… But I DO notice that he’ll twist his arm out of place, or hold it out straight sometimes…   The doc assessed Ollie by picking him up and his toes pointed straight to the floor.  A sign of tone issues.. This may or may not be why he cries and screams until he’s blue in the face… But once the doc pointed out these traits and what to look for, I notice MORE so now that he does these things on a regular basis, and because I’m so used to it… I don’t notice.. But wow..  Interesting to know.

So physic is totally in order.. but again the waiting list is far too long to begin with, so I’ve decided I’ll do a bit of research myself and apply a few techniques. I mean, the bicycle isn’t anything new… but it certainly gets the joints moving…

As for behavioural issues… He’s unable to drink, so we’re looking at taking him to a swallow doctor to see what happens when he tries to suckle or drink.. It’ll be a step in the right direction to find what’s going on… Again this may be a neurological ordeal… Oliver may not be able to tolerate thicker textures without gagging… although he’s come far with that, and has been doing really well but will still gag and vomit if it’s bigger than a grain..  These are all steps in the right direction to get him the help he needs.. Just sucks that these waiting lists are what stand in some of the way..

So the X-ray tube… or the Piggo stat? ( did I say that right? ) Didn’t happen.. it was a liver doppler ultrasound that took place.. Kinda interesting, but difficult. How do you perform an ultrasound on a baby that moves, and hasn’t eaten in 2 1/2 hours?  Distraction, distraction, distraction…  I’m just overall thankful that I didn’t have to go through that X-ray ordeal.. Although I’m more than positive I’ll be running into that come Monday …  Oye…

I know what to expect this time around… It shouldn’t be all that surprising…Then again, our life is anything But dull… Who knows what adventures we’ll be getting into Me & the Vervie