Say it isn’t two!

Cam has officially graduated into the terrible twos!  I’m not a big fan of the saying itself but there we have it.  There isn’t anything too terrible about it, in fact it is the most precious age because they begin to grow into their own selves.  His language alone int he last month has exploded, learning new words daily, repeating so many phrases and asking questions – WHY?

What great things does being two have in store for the little man; amazing progress with his sensory and behavioral issues quirks, owning patch time, showing his lens prescription who the boss is.  Or so Mommy hopes!!

IMG_5424Cam’s second birthday party was another for the baby book  Instagram world!  Filled with Thomas the Train decorations, snacks and even a nifty piñata.  I’m sure he did not even realize it was in fact HIS birthday but it sure was and everyone was there to celebrate with him.  We had chips, pizza and of course cake.  All of Cam’s favorite things!  I stuffed that piñata with lollipops and Thomas the Train necklaces and let him get a few good wacks in with a Bruins hockey stick.  There are few things in the world he enjoys more than getting the OK to beat something up, especially with a hockey stick.

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Our most progress was had at his two-year pedi appointment [SHOUT OUT TO GRAMSIE] hardly any fussing, next to no tears, no one got a black eye, and it did not take three people holding him down for a blood draw.  Can you say, WIN!  He gained a solid pound, and grew about two inches.  In other news, we have given up on most of the dairy free diet but we still monitor sugar intake.  He is finally tolerating yogurt and cheese in moderation and the tedious, confusing task of reading every label under the sun has come to a halt for the most part.  Sugar is still something we are working on, we have added grapefruit seed extract to his daily vitamins to see if that helps the yeast.  I personally say it sure does.  And I have also started him on a new probiotic on the advice of the local holistic pharmacies RN.  *TMI warning* Can I tell you it is SO-SO nice to change a solid poop, like the kind that you’d expect from a toddler.  Hopefully we have seen the last of new born-like-poop for a while.

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No real news on vision, both of his OT ladies and myself are sure he sees, and better than some of those doctors think.  Patching with the FrameHugger is working way better than the sticky patch ever was.  We are getting in at least 4-5 days a week with maybe 3-6 hours each day.  He isn’t patching all at once like when he was younger, small increments and that is fine because this isn’t a race of time, just practice.  We are doing OT once weekly and every other week twice weekly.  He is working on fine and gross motor skills, and he recently killed it with a spoon.  I so look forward to the day he can make it from the bowl to his mouth with almost all the food still on the spoon, because lets face it even I cannot keep all the food on there.  We are working on cross body, and posture.  This kid is rocking it!

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Frame Huggers

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Cam has been using a Frame Hugger on his glasses instead of a typical eye patch for just about a week.  I have been so proud of him for not only getting the patch time in by using this method but of myself for being persistent on trying. I can’t stress enough to my fellow Mom’s on this journey to sight for our little ones how important it is to never give up even when you feel like you’ve failed.

I just wanted to share this with you on how the Frame Huggers go onto his Miraflex frames.  Watch video here on YouTube I posted, hope it makes sense.

Yes. He does know how to take off his glasses. But he has not figured out yet how to take off the patch. He has been very good at keeping them on.  For Cam I think a lot of his anger with patching is due to some of his sensory issues. But he is working so hard on everything sensory and his vision so I cannot complain.  His very first full day with this new method of patching we got in a solid six hours!  Can I just tell you that it has been at least eight months since we last patched that long without incident.

Cam turns two this Saturday!!  I’ve got a big blog post planned to share with you how he is doing and what we are working on.

Keep on patching.

Get your own Frame Huggers patch to try here on Eye Power Kids website!!

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Sensory mumbojumbo… what is all this silly talk.

Some where between knowing in my gut that Cam was a little off and the pediatrician referring us to a neurologist I felt sick but I also felt a coming of peace.  Not to say that I was happy there was about to be some sort of diagnosis for his crazy behavior but that I was happy I could now learn and acquire the tools to help parent him the best way possible!  For me is wasn’t about having someone label him because lets face it there are one too many labels in this world as it is – I needed help.  I needed guidance, I needed to know I was doing everything right for my baby boy.

Sensory Processing (Integration) Disorder or as I have learned from countless nights spent on the Google Machine known as SPD.  ADHD likely and better known by three years old I was told.  SAY WHAT?!  My baby?!  Back up you crazy fancy accent doctor woman!!  You’re off the wall with this one. Anyways… on with the what makes him tick and how to help him business.  Occupational therapy.   Some OT and a serious look at my parenting (ongoing LOL) and we’re looking good. Cam was already due to get some OT from Early Intervention for his vision and we were blessed to get a woman who is a sensory guru and knows the ins and outs of vision impairments a bit.  Tomorrow is Cam’s 2nd session with her and I am excited to ask more questions and get more tips.

We have been doing the brushing protocol,- you can read a bit about what that is here -in the mornings when we do the first diaper change and two to three times during the day.  He seems to enjoy this, especially on the palms of his hands.  So lets talk about this brushing for a minute… when I think back to teeny tiny baby Cam (2-1/2 months old here)

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and all of his stiffness, screaming and miserable ways who needed to be swaddled and wrapped as tightly as possible with his face covered to be calm I realize that okay maybe this diagnosis isn’t off the wall but maybe it is legit. Maybe if we had brushed or something months ago he wouldn’t still be so insane over getting his diaper changed at almost two, getting dressed or things this summer we learned he needed to overcome (the pool, the sand box, the playground or the beach to name a few) which PS he has come so far with all of these things!  Perhaps when he falls in the mulch in the future after helping all of his little sensory receptors with this brushing he won’t freak out.  Or maybe a diaper change won’t be the most traumatic experience of the day.  I think back to the first time we let him touch paint and he nearly had a heart attack.

So a little brushing some jumping up and down and rowing of the arms is the new daily routine.  I am thinking of getting the kids mini yoga mats and spending a good twenty minutes to a half hour really getting all of his sesnory energy out.  I’ve been browsing Amazon and really like these by Bean Products so I will have to save some coffee money for a few weeks to pick these up.

Beyond this brushing business, I’ve learned that vibration is like key!  Which makes a lot of sense…

Cam is doing better each day with he patching, we are trying to get at least an hour and overtime we are out and about we are taking full advantage of the distraction and throwing it on his face.  His OT even wore one for almost their whole session and I gave her a few to keep in her bag she said she would show up with it on – seriously?!  She is amazing.  I want to keep her.  I have noticed Cam is looking over his glasses, which they told me to be aware of as he adjusts tot he bifocal.

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Six month post-op

Last week we ventured down to Boston Children’s Hospital-Waltham Campus to see Cam’s surgeon. Cameron was quick to sit down and play with the wooden bead table, still his favorite toy to give attention to whenever he sees one.  

Cam did good when we first entered the exam room, once the exam began he quickly decided he wasn’t going to participate in any of it.  The teller cards are the most important piece of th puzzle at this age, they tell the doctor what he is seeing as he cannot vocalize looking at anything at this age yet.  He did worse on them than he had three months prior but mostly because he wasn’t interested and instead of looking he would just hit the cards everytimeshe raised them.  We had been practicing with his vision therapist a few weeks back with the Lea chart so we tried that Cam named the apple and pointed to the house twice when prompted to answer “show me where ‘this’ is”.  I was proud!  The doctors assistant giving the exam wasn’t thrilled and did not continue.  His pressure checked out good after a few tries.   

So the good news is that my request for dialating drops and/or a black out contact were denied.  His vision has not decreased so they are not worried. Yet.  I however would have felt much better leaving there with another method than patching to try.  But it’s a blessing that his vision hasn’t decreased with how poor we have been patching in recent months.  

Cameron left the appointment with a new lens prescription for bifocals which should be in sometime next week!!  I am excited and hope he may be able to do some activities in a seated position rather than laying ontop of it, such as coloring or flipping through a book.  Dr Vanderveen advised us to do the best we can and continue to patch 50% of waking hours but it is most important -right now- to keep the glasses on so he can SEE clear and not just a vague blurry image.  

So way to go team!!  Everyone’s efforts combined and most importantly Cameron efforts we are six months post surgery and still improving.  Everyday you see a little bit more, and tomorrow is a new day.  

Terrible Two Too Early

Being almost two is a pretty fresh age, being almost two with an almost three year old sibling is an even fresher almost two.  And that my friends is exactly where Cameron is at in his attitude.  Between the constant biting, hitting, hair pulling, kicking, screaming, fit throwing insanity around the parts I think we are all in need of a vacation.  Cam has decided to take a vacation from wearing his glasses and patch therapy.  I was aggressive in making him, and then passive, and then well he just down right refuses.  In a little over a week he sees the doctor, so hopefully we get to the bottom of why he won’t wear his glasses.

Cam was getting services locally from an agency that sent a teacher for the visually impaired to our house for one hour a month.  She was fantastic!  The three times she came out we learned so much and she played/interacted with Cameron in a way that was visually stimulating and forced him to to lots of hand/eye fine motor type things.  Just the ideas and knowledge she shared with us were so helpful we will forever be grateful for her short time wit us.  Unfortunately, the state of New Hampshire has canceled the funding of the program. Now I don’t claim to speak for all those with vision impairment, but I know that we are going to miss her and the series greatly, I can only imagine how those children/adults with far greater impairments than Cam feel.  It is a real bummer.  We are hoping to find some other way to keep Cam on track… even if it is just basic monitor and advise. It would be so nice to connect with other parents too for tips and tricks… calling all fellow cataract parents!

So anyway this anger has become a thing, that we need to vanish.  Any suggestions on how to control a crazy hyper angry 21 month old, please send them my way!  Changing his diet has been helpful but lets be serious here… I can barely focus on the dairy, monitoring all the sugar is seriously challenging especially with the nice weather here.  But we try, and do our best.  Just like with patching.  Best advise we got from the woman who cam out from the MICE program… take a break and try again.  I swear this is life advise, not just patch advise.

And since he has been such a little stinker… I thought I’d share a photo or two of when he was much littler, calmer and still so damn cute.  Gosh, I love this little man.

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The truth about it

I won’t lie.  Things have been stressful.  Downright miserable some days.  I feel like I spend hours just trying to put the patch on his little face never mind keeping it on.  There is no easy way to explain the emotional tole patching takes on you as a mother, and I have no words to explain the extreme frustration Cam has with me while I try to stick it on and force him to keep it on.  Nonetheless, is has to happen and it does.

To patch for 50% of waking hours seems like a joke in recent weeks.  I don’t know if we took the downfall before or after the news that all the patching and vision rehab we had been doing did not improve his vision at his three-month post op appointment, but I am certain if it did not occur right before it sure did happen after.  I was discouraged, and very upset at myself.  I strive for doing the best I can.  I forced myself thru all the tears both his and mine to get that patch on and keep it on and to hear that there had been no improvement in his vision just ripped me.

We are a little less than a month out from our six-month post op appointment and I have still been giving it my all, it may not seem like it to outsiders, since the patch is hardly on these days but with everything going on sometimes its easier to go at it little bits at a time.  In recent weeks we patched at the park, perfect distraction – right… WRONG!  Everything was peachy until he couldn’t judge the depth of a climbing structure and went right down, got his first (of now many) skinned knees and was too afraid to go back and try again.  So we don’t patch at the park anymore.

Beyond Cam’s vision we are struggling with some digestive, anger and all around cranky-baby issues.  It seems his little person has a leaky gut and compromised his immune system therefore.  We have been dealing with asthma, diary, sugar and yeast intolerances.  Strict dieting took a front seat in early March to patching because getting him to gain some much needed weight was very important, and guess what — HE DID!! Our Superman is now up to almost 24 pounds!!!

Cam’s diet changes seemed to have significantly improved his mood for the most part, but he seems to be getting angry again for no real reason.  I am not sure if this is from something he is eating or just his age.  Sometimes things just really bother him more than the normal toddler, and he struggles and it breaks my heart, but that is a story for another post.

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Happy 18 Months Cam

The day we found out you existed, we honestly did not believe the doctors.  Impossible we thought – you my miracle, my true gift from God are proof that NOTHING is impossible.

My pregnancy with you flew by so quickly – your sister was just six months old and full of energy and needed all of my attention.  I cherished the moments she was asleep as I would si ton the couch or lay in bed feeling your tiny body wiggle and kick.  I remember our first ultrasound you were but a tiny “yolk” they called you.  No wonder you love eggs so much.  Days turned into weeks, which turned into months – I blinked by eyes and we were in for our next ultrasound, A BOY!  My heart swelled.

I remember the day they told me you had something going on with your heart, a calcification they called it.  The doctor grabbed his note pad, started drawing little circles and dots, talking about various tests he would suggest and what this calcification was a marker for.  I don’t remember much of what he said.  I had shut my ears off, my mind went numb.  You were my perfect gift, my miracle, how could something be wrong… there were a few weeks of might this and might not that, thoughts I didn’t want to have.  I knew in my heart it did not matter what any of these crazy tests were going to determine, I loved every fiber of you and couldn’t wait to meet you.

On October 10th at 10am on the button you arrived into my arms, like a bat our of hell you flew into this world and my heart grew.  You were p-e-r-f-e-c-t!!!  Sure you had some trouble  adjusting to life on the outside, in typical guy fashion you took your time.  You figured it out and we took you home.

You’ve been throwing me for a loop since the moment I knew you existed.  Your life is fast, a little up and down and you smile through it.  I’m not sure who stresses more over the little drama you have going on, me or you… no wait it’s me.  The week you spent in Children’s Hospital at three-weeks old tested my faith, I’d never really prayed until those moments in the ER on November 1st when they asked me to hold you’re teeny little body down while they gave you a spinal tap.. multiple tries until the doctor got it right.  My heart still aches for you in those moments, soaked in sweat, iodine and tears both mind and yours.  You’ve been so brave you truly give me strength I didn’t know I could muster up.  So I guess it should have been no surprise to me when your big wide little eye became grey that day.  Or the way you handled yourself after surgery.

So we’ve got a few more possible things to worry about, asthma, dairy-allergy and celiac disease.  April is going to wear on my heartstrings as we face some upcoming appointments… I’m sure I will stress but I’ve got your strength and you’ve got all my love and protection so this too will be another tally in the book and a journey we will take together.

You fill my life up with so much joy.  Your pure existence makes me happy.  You are a ball of terror and destruction with the smile of an angel.  I wouldn’t trade one of those scary moments in your 18 months for anything, Cam.  Perhaps you’re not just Cataract Cam Our Superman… perhaps you’re a bit of a drama queen but you certainly are Our Superman.  And while we could be facing a different battle than a few random medical troubles, we are blessed and grateful and we pray for those who are suffering with deeper wounds, more challenging struggles medically both physically and mentally.  And we will continue to pray.

“And not only this, but we also exult in our tribulations, knowing that tribulation brings about perseverance and perseverance, proven character; and proven character, hope; and hope does not disappoint, because the love of God has been poured out within our heat through the Holy Spirit who was given to us”. ~ Romans 5:3-5

On Strike! No picketing allowed in the living room.

Dear patch:

I hate you.

Sincerely,

Cameron

That is pretty much the mentality of my 17-month old the past two weeks or so.  Have you every watched WWE and seen them throw a dude in a full nelson headlock?  Yeah, well that is pretty much what putting Cam’s patch on has been like.  And even then the kid will bite you or wiggle his skinny body out from your grip.  It’s a work out both physically and mentally – for all parties.

  

Téa has been a big help trying to alert the closest adult that “baby glasses off” or “baby rip patch off” or her ever famous line “baby trouble”.  But it seems no matter what the distraction is these past few days he just won’t leave it on.  Four hours has been about the max we’ve gotten at one time, hooray for Daddy for the win that day.  He will at least leave his glasses on, thankfully 70% of the time, but when they aren’t on – he tends to be more clumsy… he had a lifted and infected big toe nail last week from stubbing it over a threshold.  A threshold which he will trip over dozens of times a day, don’t worry painters tape is going down this weekend.  He managed to loose them Sunday night into Monday, carefully hidden along the bed and wall of his big sisters bed.  So Monday he went at it patched no glasses and fed himself with a fork – wooo!!!  It’s the little things, like grasping a fork or a toy while his eyes are completely unassisted that make my happy and so proud

 

Suggestions or perhaps excuses as to why he won’t leave his patch on.. feel free to comment!  I’m just hoping it means his eye is getting stronger and maybe he doesn’t need it… wishful thinking!!!