We Heart Tito Lito

My Tito Lito just had an angiogram which showed the doctor that he has 5 clogged veins/arteries. He needs to have an angioplasty as soon as possible but they're still going out of the hospital to raise money. They only need a deposit of 100K to be admitted at the Heart Center although they need around 1M to cover the entire operation. BTW they do have a health card but it's already maxed out. If you can help, or know of anyone who can, please do contact me.

Tito Lito is Silas' true dad. All my close friends know about their weird family set up between us and the Carpios. Silas is counted as a real bunso of both families. Tito Lito is one of the kindest and mild tempered person in the whole world. He's so nice that he always gets teased as being "under the saya." I've NEVER heard him raise his voice in his whole life except when he's announcing something on the mike during church services though I have seen him irritated several times. I don't want to spill all their family anecdotes over the internet but suffice to say that when he gets mad he just keeps quiet and after a few minutes comes back with eggplants from the veggies section of the grocery and tells my Tita Ni, "Heto love oh...kumuha na ako ng talong."

Right now the two kids are staying with me. They're having a grand time but Gio, who's going to high school understand what this means more than Silas does. I know his mom doesn't want to burden him but I had to tell him not to ask for his money with his mom because I know how little they have right now. He's lying down on the bed right now pretending to be asleep but I know he's trying to be brave not only because his dad is sick but because he knows this probably means he won't be able to go back to his old school come June. I'm proud that he's starting to understand how it is to be responsible and how he can help his parents by not being a crybaby at the same time it breaks my heart to seem him at this point which will help define him as an emerging adult. It sucks to grow up sometimes.

Please please please God let him be alright.

Pursuit of Happyness...Getting There

Me is the getting happy. ^_^

I saw the ending of Pursuit of Happyness in HBO again the other night. Reflecting on our life the past several years I realise that these days I've been getting a bit closer and closer to this thing we all pursue - happiness. I recall the times when my family was really down. The time I had to sell yema and peanuts to my classmates in college just so I can have jeepney fare to get home. I recall the times when I hid from my friends because I didn't want to go out knowing that I can't eat out with them (ililibre ako for sure and ayaw ko nahihiya na ako). I remember the times when Mark and I had to go to PCSO to ask for money because we couldn't get out of the hospital. I recall the times when we went to Robinsons and we couldn't buy even one single candy because all we had was money for Sam's milk formula and diapers. I remember the times I felt there was no hope and everything was bleak. I remember feeling alone thinking I our marriage wouldn't last. I remember all the times I hurt myself because the hurt inside was just too much. I remember it all now but with more peace than I have had in a long time.

Yes. Things are getting better but more important than that I am getting better. If you feel hopeless all the time and can't seem to get past the bleakness of life maybe you need help like I did, like I still do. Getting help for depression doesn't mean being weak. It doesn't mean you're crazy. It just means that finally you're stepping up to the plate to battle the thing inside you that is keeping you from being your best. It means finding ways to make it a little easier to battle the outside circumstances you can't control. It means not letting a stupid hormonal imbalance dictate your life and telling yourself that you and those around you will not be a victim of this terrible thing anymore.

Yes. I had/have depression. Yes. I went to a doctor. Yes. I am taking meds. I am not ashamed of it anymore because it no longer has a stranglehold on me.

If this speaks to you I hope you get help too. The pursuit of happiness need not be impossible. I never realised before that I can ever feel this way again...

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!

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.

Winnie the Pooh and PWS

I enjoy looking at the search strings that bring people to this blog. Mostly though I find that people who land here do so due to the word "bimbo". For the first time someone landed on BookishBimbo while trying to figure out something about Prader Willi Syndrome. I guess it was a kid though because he/she entered the cutest search string of all time...

DOES WINNIE THE POOH HAVE PRADER WILLI SYNROME?

I have never thought about it before but here is my answer. I do hope whoever is looking for the answer visits again so he/she will know my thoughts on this one.

Let's see. Here is picture of Pooh.

Here are some of the common things people with PWS have.

1. Hyperphagia - doesn't get full
2. Slow metabolism
3. Low energy levels
4. Short stature
5. Stubby hands and feet
6. Tendency to get obese

Comparing the two I would definitely say that Pooh DOES have Prader Willi Syndrome. After all look at Pooh eating that honey in the picture above. Look at him laze around.

He is kind of short (though Piglet is much smaller) and would benefit from growth hormone shots except that I'm not sure if there's any Bear Growth Hormone available in the market. Look at his cute little stub called feet and hands. Pooh isn't obese but they might be managing his weight gain pretty well though he can use some slimming down. And last but not the least Pooh is extremely lovable just like kids with PWS are. Look at him with his friends.

Hmmm. Maybe Pooh should be invited to PWS fundraisers! Now, I'm pretty sure I'll love Pooh even more because of this.

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.

Hospital Pics

Ever since high school Jas has always been the one you can trust to have a camera with her. When she visited Sam in the hospital on the 27th of course she had one with her pero camera phone na nga lang. Really cool for us who still doesn't have any. So she and Rohel snapped some pictures of Sam. Here's the link to Jas' photo album at Flickr. Looking at her photos though you'd think it was my photo album. Hehe.

Sam playing with Tito Rohel's face.

Oh and today Sam turns two! No birthday parties though some ninangs and ninongs invited themselves over, which is great. Kwentuhan lang and some merienda. Sam just got out of the hospital last night and is still required to rest for one more week. I guess my baby is happy since he still won't be having physical therapy this week.

Hospital Again

If people are wondering why I've been silent the past few days (and I'm pretty sure no one's really wondering since we all seem to be in the habit of simply disappearing every now and then) I have a good excuse this time. Sam's in the hospital again (been there since Thursday). Maxicare clerks have their panties in a twist. They want to declare his penumonia a complication of PWS. Fortunately his geneticist and Maxicare doctor said it wasn't a direct complication and should stillbe covered by the insurance. Hah! Anyway got to get back to the hospital. Justed posted a few entries for my job.

Oh and Sam won't be having a birthday party this Saturday even if we get out before then. We'll probably have a quiet dinner with a cute cake (which he won't be allowed to eat). We don't want Sam to get tired and finances are severely strained.

Pray and cheer for our little trooper.

Sam in Hospital - It's OK

As I expected the doctor wanted to have Sam confined, which is why we didn't want him checked till we had the card with us. Nothing to worry about though. It's just pneumonia again, which is something we're pretty used to. Sam is a fighter anyway and is probably basking in all the attention the doctors are giving him. As always we get really good service and doctors pay real attention because they're pretty happy to be able to handle someone with Sam's condition (not pneumonia sillies but PWS). Anyway I am actually happy since we now have a pedia-pulmo for Sam and he's been endorsed for a sleep study. Hopefully Maxicare approves it. Now we only have to wait for the Maxicare doctors to request for an EEG, CT Scan and Reflux Studies. Hihi. The insurance company will end up hating us. I'm pretty sure though the doctors will be very accommodating again. Thank God for this provision.

Oh and BTW Sam is in Makati Med. Visitors are welcome as long as you bring ME some magazines or cold drinks. ^_^

Checkups

Sam's health card is here at last. Now we go to Makati and they'll go bankrupt from all the checkups and tests he'll need. Hehehe.