Good Job Sam!

After every therapy session, Sam's OT writes down the list of tasks they completed along with remarks like poor/good compliance, easily distracted, "minimal/moderate/maximum" assistance given, difficulty performing this and that task, and so on and so forth. With more obstacles than triumphs, reading his notes can sometimes get you down. I'm so used to them by now and so I didn't really expect to see anything different when I scanned the notes for today. I was pleasantly (understatement) surprised to see entry number 5 for today. It says...


5) Sorting animals and mangoes
    Independent

Woohoo!

While sorting toy animals and cardboard mangoes might not seem much for a 6-year old kid, it sure is one big achievement for our Sam.

Way to go Kuya Sam!!! We love you and are so proud of you!

Blogging for Elijah and Sam

It seems that the only time I remember to blog is when I feel nostalgic. Despite repeated promises that I'll be blogging more often, I haven't gotten around to actually doing so. Tonight though, after seeing Sam's old pics, and how this rusty old blog has helped chronicle his life, I just had to post again. After all, I want to be able to look back 6 years from now and reminisce not just about Sam's journey, but Elijah's as well.

Here's a few pics to start me off...

Elijah's first day on earth. Feb 16, 2011.


Kuya Sam and Eli's first gimmick together. Pagpapa-araw sa Bago Bantay.


Three+ months and smiling really widely.


Four+ months. Standing really well and learning to take care of Kuya already.

That's it for now. Since may netbook na ko and internet sa bahay, I should be able to post more pics more often.

Random Sam Pics

On his munster horse (used to help him practice
standing and stepping).

With baby Aoi (ah - wee). Sam get's mad whenever anyone
takes Aoi away. He adores babies. Gusto na ng kapatid! Hehe.

His favorite little game these days - peeking out of anything.
He does this with anything that has holes like his drum (below).

Playing with Sam while looking for a clothes cabinet
(we didn't end up getting this one).

On the way to SM. We make him sit on the "charity" seat
(toolbox in truth) but we do hold on to him.

Sam's Little Steps Towards Success

This makes it all worth it....

Look, I got new AFOs and orthopedic shoes!

I can stand!

...and do so with a huge smile on my face!!!

Tito Paul is funny...

...kaya sasabunutan ko sya.

At the end of the day what makes it worth it is not just Sam's ability to walk but his desire to walk and the smiles that comes with it. Now he loooves to stand when playing with us. Still not for long periods but long enough to tire US out. Oh, and he loves "singing" with me as well.

Sam at the Beach

This post is a couple of weeks late but I still want to show some Sam pics. We stayed at Tamarraw Beach Resort, which is not the popular choice to stay in Galera, making it perfect for us. The beach was quiet, the resort staff discreet, the place clean, the rooms big, and facilities really good for the price. Am glad my Ate and Jerry found that place. Am sure Sam enjoyed it too.

Enjoying the rocking boat.

Playing in the sand with Kuya Silas and ate Myla.

Sand!

Sun, sand and sam. What more do I need to make me happy?

Lifeguard tower. Too high and too far from the water to go and rescue anyone.

View from the lifeguard tower.

Pics with the Kids

As promised here are some pics of the kids . Not exactly at home in these pics but with my sister and Jerry at Eastwood.

Sam imagining the food he'll be seeing on the plate. Yum!

(L-R) Jerry, me, Sam (playing peek-a-boo behind the menu),
Gemmalyn, Silas, Gio

Resting a bit and having dessert before heading home.

Three stooges.

Silas, Gio, Sam and Nana

I Love Having 3 Kids

They're quite a handful and I have to countdown several times a day to get them to do what I want but I'm loving having 3 boys at home (5 if you count Mark and Jamuel). Sam seems to be having a grand time with all the kuyas (titos in truth) showering him attention as well and has been picking up on Silas' and Gio's fights so that he likes to scream and throw mini-tantrums every now and then. Since he's too well behaved I'm actually happy that he can now communicate his unhappiness. Mark and I are also love seeing Sam's cute face scrunch up when he's about to cry after being scolded a little. Haha. Ang sarap magpaiyak ng bata. It's all we can do to resist toying with his emotions. Truthfully we would if it wouldn't have a long lasting negative effect on Sam. But that is not a good thing so we refrain from doing it. Plus we're pretty sure his lolo and lolas will give us hell if they find out. Bad bad parents! I now understand why Luz and her sibs love to make her niece cry. ^_^

Will be posting pics of the three kids together once my sister uploads yesterdays pics.

Darn Baby Toys

I am feeling a bit frustrated with the kind of toys available on the market not because they suck but because they don't fit Sam. Sam's therapist asked us to buy a doorway jumper or a jumperoo for him but I encountered several problems:

1. They are not available in the Philippines.
2. Sam is over the maximum height for all the models I've seen. He's 93cm and the max is around 85cm.
3. Sam is almost over the maximum weight 25 lbs. He's 24 point something pounds.
4. Shipping rates are expensive.

Now if there was something available here it wouldn't be too bad because we can try it out to see if he can still use it though he's a bit too big for them already. But I don't want to buy something he won't end up using! Argh.

Days like this Sam's special needs hit me. I hate it that I can't figure out which category I should look at when shopping for "prescribed" toys since his body size is appropriate for his age but his skill fall under the infant section. Ah... Life with Prader Willi Syndrome...at least I can't say that it's boring.

Anyone here knows someone in the Philippines who supplies these toys? Please contact me!!!

Fisher-Price Jumperoo

E&I Bungee Jumper

Jada and Sam Pics

Ate Abi, Aijo and Jada went back to Australia last Saturday evening. Earlier that morning we were able to coax Jada and Sam into posing for some pictures. To see all the pics go to Mark's Picasa web album.

We are the ones we've been waiting for...

Na...nananana...nananana...

I can't help it. Call it joining the bandwagon but still he gives me hope and as he says " there has never been anything false about hope."

I am not American but I am campaigning for Barack Obama.




Btw Sam can now say "O-ba" and "Ba-ma" but not the whole thing. Since he still can't say anything other than syllables right now this is a huge thing. We're crossing our fingers that OBAMA will be his first word. If that happens you can be sure he'll be another Obama baby on YouTube.

Yesterday's Miracle

Yesterday turned out to be one of the best days our family had in years. It didn't start out great it didn't end up great either but all the negative aspects doesn't hold a candle to the huge miracle we saw first-hand. SAM TOOK HIS FIRST (assisted) STEPS. Considering the fact that we have a really hard time even getting him to kneel or stand it was totally amazing to see him move his legs in a weird-looking but definitely real small steps with minimal assistance (the therapist was just holding him up by the head).

I almost had no hope of seeing Sam walk within the year but maybe he will. Paul Beelen (a paediatric rehab specialist) is a miracle worker. A single session with him will burn your pockets but what you get in return is priceless. I'll see if Mark can cut the videos we took and share the ones where Sam moved his legs.

Other noticeable improvements that I might not have reported to all my friends lately include:

• Sam feeding himself lunch/dinner using his hands. It's REALLY messy though.
• Sam's one-eyed peek-a-boo. He can't resist peeking so he covers only one eye!
• Sam's ability to kneel from a sitting position with minimal assistance (but only if you know how to prompt him and if he knows he can't manipulate you into thinking he's too weak for it ^_^)
• Sam's ability to keep the quadruped position (all fours) for more than 15 minutes completely unassisted.

If you have a special child you will understand why we consider these seemingly trivial things a really big deal.

I remember something I saw on TV lately. They said that people said that people viewed the survival of a very ill baby to be a miracle but the truth is that we who have children with special needs know that the true miracle is that there are thousands of babies born everyday that are completely healthy and without defect. We are thankful for our miracle boy but I just want to remind all of you who are parents to never forget the miracle you have and be thankful for it.

Have a good day and I hope you see a little miracle in your life today!

Therapy Photos and Mommy Talk

Thanks to Ninang Cherry's phone we finally have recent photos of Sam. There are really cool videos but I don't feel like uploading them tonight. Anyway here's Sam with his teacher and one of him with his anti-social classmate. You can see how strong he's getting and even though staying upright in all fours might not be a big deal for many 2 yr old kids we're so proud of his progress with his arm and leg strength. Hopefully he'll be able to walk before he turns four. I would be ecstatic if he does it by the time he turns three but realistically my goal is to see him stand with minimal assistance by then. Sam is actually standing on the pic where he's holding up a toy ring. He has a horrible time being held up but at least he actually bears some weight on his soles now. What a fighter my boy is. I'm so proud of him. By the way I intentionally chose the blurred picture of his classmate because I have no permission to post his pic. It's actually funny because Sam has been able to "bully" two of his classmates since last week. I guess I shouldn't worry much about him being bullied when he grows up. He was able to make a much bigger boy cry by sticking his stubby fingers into the boy's nose although to be fair the kid has cerebral palsy so him and Sam sitting together made for two floppy boys. (Note: It isn't funny making other kids cry especially when they feel helpless. I can't explain it but it was ok that time.) He was able to make the little boy in the photo below cry simply by sitting beside the kid since that cute little boy (he's one of my favorite classmate of Sam's) is scared of small kids. Believe it or not even at his age Sam is already helping other kids by cooperating with his teacher in trying to draw out the less sociable kids at therapy. It's great to see him grow.

Sam doing the quadruped.
Sam only needs minimal support in this position.

Sam playing with toy rings while Teacher Con
corrects his standing position. Look no tears!

Sam's classmate (who is already able to walk) making his getaway.

Blogging to Do Something

Not that I lack stuff to do. In fact I have LOTS of stuff to write and blogs to spruce up (not mine but for my job). I could also do some cleaning in the house. Or playing with Sam (he's asleep though) or doing a hundred different things...even just take a shower. I haven't even had a shower! So what? I'm having a bad day and at least I'm blogging to get out of bed. Since I'm in a lazy blog mode I thought I'd just respond to Kris' tag, which is actually something I have done before (read my post on Weird Things About Me). I do know there might be a few more weird things about me though so I might as well add them on the list.

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Note feeling so much better...Sam woke up and is laughing for no reason. Got to hug him and rough him up.
****

SO here's my new list. BTW to make things easier for me I'm copying some items from Kris' weird list. It's all pretty funny but if I were his wife his 9 lives wouldn't do him any good. She must be an angel or just has a really high tolerance for pain.

1. "Sometime I randomly get scenes flash in my head about harming people out of the blue." Don't feel like going into details but my violent visions sometimes disturbs me.

2. "When seated at a restaurant, I need to sit in the seat where the least amount of people could sit behind me, and I prefer to face the door too." This is no longer true for me but it was from grade school up until college (?). I blame Robert Ludlum for this one.

3. "I want to be rich then give all my money away to poor people, save for enough to leave my family well off." I think everyone is this way though except for the real scrooges. But I'm adding this anyone to get one more item on my list.

4. I have girl crushes. Remembered to put this one because of Jam's post on man crush. Currently my girl crush is Mila Jovovich. She's pregnant, fat, and still sexy. Huh? True! Look at her pic here. I loooove Resident Evil.

5. I can live without meat but not without veggies. Ok, so this isn't to weird considering all the vegetarians out there. I just found this blog (What the Hell Does a Vegan Eat Anyway) and I'm feeling inspired. Will try to add more variety to the veggie dishes I know. Hope the blogger doesn't mind that I hotlinked to the page and stole this pic. BTW it's a red pepper enchilada with tomatillo sauce. Whatever the heck that is.
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Need to pause. Sam just fell off the mattress again. LOL. He is so funny.
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6. I find it funny when my son falls off the mattress.

7. I hate waking up when I have an unresolved issue in my dream. If I do wake up I force myself to sleep again and resolve the issue - give it closure, before continuing with my day. This way I waste a lot of days. I am too attached to my dreams.

8. I tend to daydream about those i love - dying. It's been this way since I was a kid. I would daydream until I got so scared or sad that I cried. So if I think of you dead that means you must be on my "most loved list." I hate this fact nowadays because sometimes I feel guilty that maybe it is the reason why Sam got sick. Doesn't make sense huh?

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I can't really think of anything more right now. Will just update this if I do to make it ten. Leaving 2 blanks. Tell me if you know of some weird thing about me I might have missed.
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9.

10.

Cyber Party and a Trip Down Memory Lane

I was just looking for a good mom site and found the Cyber Shower Party at 5MinutesforMoms. Of course it interested me. Who has ever heard of a cyber shower party? (And no dear high school guy friends it's not the kind of shower you're thinking of, it's a baby shower.) So anyway I decided to join in the fun. Problem is I don't really have anything to post on my blog. I know I won't win with this photo (they're looking for the most brutal after birth photo...just head to the site to get an idea ok?) but scanning my old posts I found this cure pic of Sam. This was taken by Armi on Sam's 1st or 2nd day in this world.


**************

Looking back. I realize how easier it was in the beginning to have faith that he will get well and be alright. As time goes by though it (PWS) gets more depressing. The medical problems just keep adding up. If it weren't for the other blessings in my life and if Sam weren't so darned cute and well-behaved (...and lovable and sometimes even funny and I could go on an on...) I would be jumping off our balcony right now. Thank God for the good things in life. Thank God for the little strength he makes sure we always have left. Thank God that despite everything Sam will always be a miracle to me. He's still alive, isn't he? He still makes me laugh everyday, doesn't he? He might not grow up to be smart nor an athlete but he will still be the pride of my life.

Silas Anecdote

After reading Kei's post on House Blues I plunged deeper in to depression. I just miss Silas so much. To help make me feel better I am blogging about this conversation with Silas back when he was still my little boy. He's still our boy but he's the Kuya now. I love that kid....

Me (showing off to the only person who would believe I can do magic): Kaya mo to?
(theatrically gagging while I "swallow" Silas' toy sword)
Silas (looking at me in awe...then concern): Ate Han, tama na.
Me (after removing the sword...touched by his concern): Bakit?
Silas: Eh kasi baka matusok si Jesus.

To those who didn't get it, in church we teach the kids that all you need to do to get to heaven is to be sorry for your sins, believe in Jesus, accept Him and He will live in your heart. The oversimplification of the matter has time and again mislead kids to believe that Jesus is physically staying in their hearts. Ayayay... It was a mistake to post this. I feel worse now.

I miss Silas.
I miss my God.
I miss me.
I wish Sam will learn to talk so he can start saying funny things...

Hay...time to drown my worries in Xenocide. Thanks Earl!

Story that Made Me Smile

Read the news story about Donna Gunnison a 52 year old actress with Prader-Willi Syndrome.

News like this gives me hope and makes me smile. If my Sam would turn out to be a stage actor he'd be fulfilling one of my childhood dreams for myself. It doesn't really matter though what he ends up doing when he grows up. I am sure Mark and I will be proud of him anyway. Days like this make me excited about what the future has in store for us.

Sam Update

Sam has been showing some progress lately. It's really a blessing since I've secretly been worrying and feeling a little down because of all the medical complications and his way too slow progress. Since Friday though he's been amazing us with some significant (at least for him it is) improvements. Latest developments include:

1. Ability to tilt forward while sitting until his head reaches his feet and then stretch out a bit so he can lie face flat on the bed. He still gets all muddled up with this one though and ends up with a leg or an arm stuck underneath so I need to push him a bit to help him get going.

2. Ability to hit his telephone toy with the receiver to get it to make sounds. This is a really big deal because it means that he's learning to use tools. The funny thing though is that sometimes he hits the back of the phone but since it's face down the buttons underneath get pushed and it still makes sounds.

3. Even better than number two was when Sam put his tiny fingers together, pointed it towards the phone toy and then tried to push the buttons with his fingers! He finally understands that you are supposed to hit the buttons for the phone to beep and say "Hello!" and "Goodbye"! Woohoo! I've been showing Sam how to play with it since he was 4 months so it really is rewarding to see him playing with it on his own. It's really a good sign too that he is finally developing problem solving skills.

4. And last is his overall behavior. He now knows how to complain by making cute shouting sounds when he's uncomfortable or needs attention. This is really good since he never used to complain even if his nappies are really soaked or full of poop. But though he knows how to complain more he's been very good during the last two therapy sessions and cried very very little and almost never complained. It's really surprising since we've been absent for more than a month due to his bouts of pneumonia. He is so much more alert and active now. I'm so proud of my boy.

And now... pictures! The pictures were taken this morning before Mark left for work. Notice that on the third one Sam is sitting very straight and is slightly leaning forward. His balance is getting really good! ^_^

Still asleep. Look at those arms! I'm glad he's getting thin.

Great wake up call from Mommy and Papa.

See me sit. Hindi pa ako nasusuklayan!

Hunger in the Eyes of a Child with PWS

Hunger exists in this world. I have no idea how parents who are unable to feed their child feels. It must be gut wrenching to see your child starving and just not having anything more to give. This fact is something the world knows about... and it is our crime that this kind of hunger continues for there are resources to help those in need.

The hunger that personally hounds our family is of a different kind though...yet it is equally as heart breaking. How does it feel to let your child go hungry when there is food in the pantry? This is something I don't know yet. The time is coming that I will know though and it is what scares me about PWS the most. Some days I think Mark and I live in denial about how it will really be when "the hunger" arrives. I keep on hoping it won't come or a cure will be found before it happens with Sam. A lot of parents with PWS must have felt this way too. A lot like us dread it. And now it has arrived for a little girl named Juliette. Here's an email from Juliette's father, George, that makes it clear to me that it too will happen to my son... unless a cure is found fast. Oh God please let there be a cure...

Over the weekend, Julie (almost 6 with PWS by UPD for those newcomers) and I had a chance to play a bit. It was about 10AM. Julie had had her breakfast as always at about 6AM. Then a little snack as always at 9AM. Now it's 10 and we're playing a bit and she says "Daddy, is it lunch time yet?" I answer "No, Julie. Not for a while yet. But you just had a snack, you're not hungry again are you?" "Yes I am, Daddy" she says, then adds "Daddy, I always hungry." :>( Great. "Julie, can u use your smart brain to tell your tummy to wait a while, that it's not time to eat again yet?" "I try to, Daddy. I always try but nothing will work."

And an even more poignant one from George again...

Our teenager has a summer job as Baskin-Robbins. Most nights when she works she brings home a cup of ice cream for each family member, special as ordered for each of us. YES - I can hear you all screaming now. The only excuse I can offer is that Juliette's is always no fat or low fat frozen yogurt. She loves it, it aint half bad calorie-wise etc and she doesn't really know the difference right now between it and ice cream. So, one of the deals with her re food is she gets a small treat after lunch and one after dinner. I mean small. Typically it'll be ONE sugar-free cookie. And she is happy as a clam to get it. Well, when we have the FroYo for her, she'll have that. Whitney always takes some out of the little cup and gives it to Julie. Usually 1/3 to 1/2 of what's in the already small cup (holds about one scoop.) So it really isn't much. Julie is always happy about what she gets. Never complains or asks for more. So last night I was on treat duty. There was a new full one-scoop cup of froyo available and I gave it to Julie with a spoon and said "How much do you want to eat?" She said "Half" I said perfect. You eat half and I'll put the rest away for tomorrow. I leave her to it and come out to the computer. 10 mins later, I go in to check on her. She enthusiastically holds the cup out for me to see and there's still more than half left. I say "Great job. Go ahead and eat a few more bites and then put it in the freezer." I left it for her to do. I want SOOO much to trust her. About an hour passed. I had forgotten about it. Julie came out to lay on the sofa where I'm working. After a while she says "Daddy?" "Yes, sweetie" I answered. "Daddy that ice cream not working for me". she says in an apologetic tone. "What do you mean?" "It not working for me" she repeats. My heart starts sinking and I go to the freezer and it's not there. I find the empty cup in the trash. She ate it all. I didn't get mad at her (how CAN I?) I came back and she said "I put it in the trash" "I know Julie I saw it there. You promised me you would only eat half. WHat happened." "I tried Daddy I really tried but it not working for me." And she was sooo sad. She really felt terrible. She then said "I cant do it myself. I need help" She really said that. I told her next time I promise I will help her. So I guess I learned a lesson that Whitney and probably most of you already have learned. I learned it from the mouth of my almost 6 year old. She (and probably all folks with PWS) is aware of the compulsion to eat at some level. She does try to ward it off and fight it, even at the age of 6. But she cant do it alone. I need to help her. I need to be smarter. I need to encourage her and be there every time when she needs help. Like any of our children, only much more so. She wants SOOO much to do it herself. But sadly, she can't. And I can't trust her with food.

Now please excuse me but I must cry.

One Small Step to Help Kids with PWS

In support of FPWR I have decided to blog about all the upcoming fund raising events held by members. Though no events are scheduled for this month there'll be three events this August. Venues will be in Seattle, Pennsylvania, and Ontario. So if you know someone who lives there or nearby encourage them to go even if it's just to educate themselves about PWS.

August FPWR Fundraisers:

Second Annual Seattle Walkathon (August 4)
Venue:
The Landing at Bothell Park
9919 NE 180th St
Bothell, WA, 98011-1925
United States
Activities:
walk, water balloon toss, bubble machine, face and hair painting, feeding the ducks, music, games, healthy snacks, bouncy house

Philadelphia Golf Tourney (August 17)
Venue:
Juniata Golf Club
1391 E. Cayuga Street
Philadelphia, PA, 19124
United States
Activities:
Golf tournament, food, drinks, reception, skill contests, awarding of prizes

"One Small Step" Walk-a-thon (August 19)
(check out their website it's really nice)
Venue:
Centennial Park
256 Centennial Park Rd
Toronto, ON, M9C 5N3
Canada
Activities/Entertainment:

• Surprise Guest appearances including Elmo, Carlton the Bear (Toronto Maple Leafs Mascot) and friends.
• Soccer exhibition and tricks by Willy G. the Soccer Freestyler ( www.madskillsinc. com)
• Live music provided by Lost Americas Band
• Music by RPM DJ Crew
• Free airbrush tattoos
• Kid's Area including jumping castle, face painting, and children's games

No that isn't my Sam but these are kids like him that are battling with PWS.

Root Canal?

My tooth hurts. I can't think too well and research much. Still waiting for mark to come home and bring me pain killers. I am allergic to Ibuprofen and Mefenamic Acid so I can't take those. The paracetamol isn't working too well. Just had this tooth temporarily filled to see if we can save it. Hopefully the pain subsides in a couple of days. It not this means that I will either need to have it pulled or ask the dentist to do a root canal.

Root canal image source is this link.

Jam you had the procedure before right? Did it hurt too much and how much did it cost? I don't want to have my tooth pulled but I might have to if it exceeds our reimbursable dental budget too much.

BTW the dentist was really nice. In fact he was so nice that I decided that we could trust Sam with him. He had his baby girl in the clinic so I know he can handle a child. Will bring Sam over on Thursday for his first dental check up (which he badly needs). The dentist said he'll just check Sam's teeth first and allow Sam to know him and see the tools before going back to have his teeth cleaned. He says it's important for Sam to get familiarized so he won't get scared of dentists. Even if we move to another insurance I think I'll keep this dentist for Sam. He also doesn't know about PWS but he told me he'd do research first to make sure he gives Sam the best care. Now that kind of attitude is something that puts me at ease.