Our Family's Journey

Not many of our friends knows about my son's congenital defect. We know that there's something wrong with his development but maybe we were in denial to accept the fact, especially me.  It's just too difficult to bear that I am part to blame with his condition.  I've just recently open myself to talk about my son's condition when I heard how my husband casually talk about it with his officemates.  At first, I was hurt and asking how can he do that, this is all about our son.  Eventually, I told myself maybe that's what I have to do, accept the situation and go on with life...go on to find solution for my son. Until this moment, doctors couldn't identify the cause of his defect.  We've been to 4 specialists already and each one of them have different prognosis but most of them mentioned the same thing, that my son has to undergo Achilles Tendon Release.  I've searched about it online and barely could I get an exact condition as him. So, I'm telling his story to help someone who might have the same condition as him.  

My son, now a toddler, cannot walk because he cannot straighten his legs due to the short muscles at the back of his knees. When he was born, his right toes are on top of each other. The doctor said it's "club foot".  Hubby asked the doctor if it's something serious but he said nothing to worry as we can correct his legs by massaging daily.  When we checked photos on the internet none of it are the same as his so we thought, it's really nothing serious.  

When he's about to turn 1 y/o, hubby and I are wondering why he's still not walking. Oh well,we thought he's just a late bloomer and maybe if we buy him a walker he would walk soon. Until he reached 15 months and no walking happening.  We start to bring him to development pediatrician. Lo and behold, she said that there's a possibility that my son has cerebral palsy..the whole world just fell on me! I know how children with CP look like and he doesn't look like anyone of them. She sent us to see an orthopedist.  According to him, my son needs to undergo surgery but he didn't tell us the cause of the defect. Fast forward...we went to another 3 doctors, 1 told us that he'll never walk in his lifetime because he said he has polio, while, the other one doesn't want to do surgery until 7y/o...what!!!...how will he go to school, and he said we can send him to a special school. I told myself, he doesn't need to go to a special school, he is normal therefore he must attend the normal school.

Just to confirm to what they're saying, we consulted to a Filipino orthopedist while we were on vacation in Manila.  According to him, he really need to undergo Achilles Tendon Release Surgery. He also told us that if we delay the surgery he might develop scoliosis.  So after hearing that, when we returned to Thailand we immediately find a doctor who could do it.  Referral after referral, we found at last.

After series of tests, last July, he undergone Achilles Tendon Release...it was heart-breaking to see him struggle.  I thought I would pass out while bringing him to the OR but I have to keep strong for him. After an hour of operation, he's done but he was really frantic with all the anesthesia in his system.  After 2 days,we were on our way home.  After a little over 2 weeks, he can move freely but struggling a little.  Here's the video...Miggy wearing his first leg cast

He was very dependent on us on doing his daily activities. After few weeks the doctor changed his cast and this is how it looks like...Miggy wearing his 2nd cast.  When he changed to 2nd cast, he was able to stand with support already.

After another few weeks, his cast were removed and this is how his legs look like - swollen, dry, beaten, almost black and blue...

He has pressure sore that he complained a lot.  Even a slight pinch, he would cry because of pain...

Then he was advised to wear AFO (Ankle-Foot-Orthosis) for 3 months. Just after a few weeks wearing AFO, he was able to stand and walk with support...all on his own but of course while holding on to something...Walking, Walking...

He was able to wear his shoes a little over 2 months after his surgery...Walking 1, 2...Walking 1,2...

After checking with his PMR doctor, he was advised to change his left brace from AFO to KAFO (Knee-Ankle-Foot-Orthosis) to stabilize and strengthen his left knee.  When we got it the first time, he was hurt, overwhelm and anxious all at the same time...another adjustment but he's really getter better...Walking with KAFO. His KAFO is non-adjustable so he has to drag his left leg just to bring it to front.  Everytime I asked him to walk, it breaks my heart to see him suffer but he just needs to do it.  With his fear, he needs to balance holding any support with both hands.

Just a few weeks after putting his KAFO, I have to find an opportunity that he will let go of his one hand so he can practice to balance his weight...luha, dugo at pawis ang puhunan ko dito (I have to shed tears, blood and sweat) until he was literally forced to let go or else I'll leave him at school...am I a bad mom, I guess yes but this is for him...at nagbungga naman, look at him on this video, he was able to browse other things while he's holding on with another one...another first for us and with me.

On November 30, 2012, I would never forget that historical day(Bonifacio Day), he was able to try to walk on his own, but maybe we are forcing him too much that's why he keeps on falling and cannot keep his balance for a long time...but I know from this day on I just have to wait when he's fully ready.

For his Christmas toy, we looked for a trolley that is stable and will help him gain his confidence but to no avail.  We even bought one expensive branded toy for him but didn't help him at all.  Until one Friday evening, while we are on his reward playtime (in other words more walking practice) at the toy shop, there's this bear workshop that displays a stroller for the bears.  At first, I was skeptical because it's too light for him but the height is so prefect for him...I pointed it out to him and it was him who took it and use it for his walking...he suddenly gained confidence to let go of my hand...he found it helpful that's why even after a numerous of 'dapang plakda'...imagine the kind of dive that splashes water around but instead on water, he fall on flat and hard floor, with chest first...surprisingly, he never cry and just wait someone to pick him up and carry on with walking...This is another first for him, he never experience 'dapa' because we always hold or carry him.  Since then, that stroller is his best friend...Miggy's BFF...hubby said it's time to buy him a helmet, chin guard, sets of knee, and elbow pads not for biking but for his walking...

Weeks and months passed, we are relatively satisfied with his development but then we have to send him to a school.  He's already 4 years old and he missed a lot of things already.  I just hope I can homeschool him but hubby and I need to work for him.  So on Holy Week, while everyone's having their 'Bisita Iglesia', we are doing our 'Bisita Eskwela'...trying to find a school that can accommodate his condition.  I don't think he will be conscious with his disability at this time but I am afraid that if I send him to a big school, he will be bullied...so small and child-centered kindergarten is our best choice...here's the glimpse of his Kindergarten life to be.  Of course, mom is still scared for him but I cannot protect him all the time, mommy also needs to let go of him at some point.

June 10 was his check up with the PMR and orthopedist..they were smiling when they saw him...happy with his development but... the PMR said, my son is depending too much on the brace so she asked us to remove the knee stopper, regularly unlock the brace's joint and eventually remove the brace...honestly, I have no idea how I would convince my son to remove his brace,  now that he can fully enjoy going around even with the help of his stroller.

  

June 12, 2013, Philippine Independence Day, another historical day...I took the opportunity when there's a very few people at the grocery to challenge him to come to me without holding anything.  At first, we created a little commotion since he started to cry and saying "I'm scared"...I wanna say to him "I am scared too" but we just have to try it.  I carried him to a spot where there is no one walking, hold a few inch of his shirt at the back and said "focus and balance lang"...after few seconds, I released my hold and let him go on his own...when he felt that I'm not holding him anymore he tried to stop but then I raised my voice and demanded him to walk (mom's tough love), then he went on walking...and walking...and walking by HIMSELF.  I cannot leave my eyes out of him as I was afraid he would lose his balance and fall...but he never stop until...UNTIL he reached a busy area, someone walk backwards and bump on to him...I carelessly say "P kha" (Ate in Tagalog)...literally napasigaw ako, I think I caught people's attention to look at us...we never intend to cause such scene but who cares, I didn't even look at the woman who keeps on saying sorry (I feel guilty afterwards though)...I looked at him and waited if he will cry...he didn't cry and instead waiting for someone to lift him up...I lifted him, brush his chest and ask if he's hurt...he only said "mom, focus me sa likod"...ano daw? di ko gets...Ah, he asks me to hold his shirt so he could get his balance again then he started to walk again following my command to go to the cashier...from cashier 32, he walked going to cashier 7, that's 25 cashiers apart!!!...without support and without falling...hubby and I were in awe that we forgot to video his milestone, well our milestone...when we reached the cashier I asked if he's still scared but with the smile on his face I know he's not anymore...Thank you Lord for giving him to us, he's our everyday miracle...HAPPY INDEPENDENCE DAY!...rather HAPPY MIGGY INDEPENDENCE DAY!