The Second Year

Person: So how’s your daughter?

Me: Oh she'll be turning 2 this Friday.

Person: Oh, is she running and climbing around the house and getting into things?

Me: pause...

Me Thinking: mental picture of a typical 2 year old versus my mental picture of Isabella

Pause again….

Response: No....

I have not really entertained Isabella’s chronological age for a long time. It just helps not thinking about where she is at and where she should be and to see that big difference in between. I have trained myself to focus on the things that she can do rather than obsessing on developmental checklists. I’d much rather get lost in the numbers, but on this particular moment, after this conversation, the numbers caught up on me… like a slap in the face.

I realized that my daughter is not really even a year old.

…

It’s been days since Isabella had her second birthday and I do owe this blog a post about that year that has passed. I’ve contemplated against writing something sad about her second year... but eventually I gave in... thus this blog post that I’ve procrastinated on writing.

Truth be told... it was painful for me to celebrate her second birthday.

I know, I know... there were significant developmental strides, and yes those were JOYS added to our list, but in between those strides are the long arduous wait times to see what she achieves next... and quite frankly, sometimes I feel that the wait takes its toll on me rubbing off the novelty of what she has achieved the latest.

Maybe its because they are too little to even describe or tell as a story.... mostly I think its me and my bitterness.

Yes, I still feel bitter from time to time, and with her second year, I felt it big time.

YES, she can sit and pull herself to stand, BUT all her younger counterparts are either walking, running, climbing, jumping, getting into things, making a mess around the house. While some who are even way younger already balancing while bearing weight on their legs.

YES, she's discovered toys and picks up things and shakes them like a rattle, BUT her way younger counterparts have moved past beyond the joys of rattling a toy and moved on to the musical light up ones. Even better, others have regular playmates and scheduled play-dates.

YES, she always has a ready smile for us. BUT I have yet to see a response that signifies a head shaking to tell No, or a nod, or a clap, a gesture to give something, a goodbye wave... or to just hear her call me "mama". Will she ever call me mama?

….

When she turned one, technically, her delays were not yet that far apart. I will often find myself looking out into the unknown future armed with hope... now at two and not even reaching the one year mark, what do I arm myself with as I look out into that big, and what seems really long, unknown future? Somewhere there my positive thinking was like a drug that gave me mood swings of denial.

But, I know that I cannot give up hope completely… because really, that’s all I really have. So, I just look out without those false glorified visions nor expectations.... Just a small stare out into the open with a soft pursed smile on my lips, because it hurts too much to hope too big.

I think there is this fine line between too much hoping and expecting and practically begging for something great to happen. Like I said, hoping too much was clouding my perception of reality.

....

We celebrated her day by going to the bowling alley, with the theme of "for all the developmental milestones she worked so hard on hitting one bowling pin at a time" kept in my mind... and yet I found myself silently grieving on her birthday while I bowled till my right arm hurt. It was frustrating to keep trying for a strike, or even just a spare instead of the frequent scattered pins or getting that dreaded gutter ball.

As apropos as bowling seemed as a way to celebrate her special day, I guess I need to get better at accepting that sometimes its not how the balls are thrown, not those carefully planned angles, nor the strength of your throw, nor the speed of release, nor the weight of the ball, nor the careful placement of the fingers, nor the strategic twist of the wrist, nor the graceful forward step and follow through.

Perhaps that’s just how the pins are supposed to stand, and I should get better at thinking and feeling that that's okay.

Because it will.

Because it is.

That, or, I’m just a really terrible bowler.

...

Now, I look at her, and I say “Kiss Nanay” and she readily leans forward for her cheek to touch my lips...  and she smiles at that moment of contact like that's the best thing ever... I just hope my heart catches up to that big silly grin on her beautiful face.

We Are Not in Kansas Anymore

You know you are not in Kansas anymore when you know how to use the reminder and calendar function on your phone even with your eyes closed because you’ve developed a system to organize doctor’s appointments into manageable chunks that fit into your schedule.

You know you are not in Kansas anymore when you find feeding bags in your garbage can as much as you find diapers… and in your mind, you know that it’s going to be like that for a long time, so you worry about carbon foot prints and the situation of the landfills.

You know you are not in Kansas anymore when changing the Mickey button feels just like inserting an earring into a hole, and you don’t get squeamish about it at all…. Not even one bit.

You know you are not in Kansas anymore when you have fallen deaf to inappropriate comments and blind to unwelcome stares… and you become more aware of this fact when you’ve learned to be bothered less by these things and you feel proud at what you have become…. and it almost also feels like you have a secret… you perceive things differently and see nothing but beautiful on every square micro-inch of your baby’s face... something that the stare-ers and whisperers are blind to.

You know you are not in Kansas anymore when you disinfect more than you usually did because you don’t want your child to get sick because a spiking fever leads to a whole set of more complicated issues so you try your best to nip the spread of germs as early as you can.

You are not in Kansas anymore when you are always curious about your daughter’s weight, have an obsession for ounces taken in during feeds; and nap times and medication schedules are followed diligently like it’s a religion. You’ve also learned how to really read labels to look at protein and potassium content because you just cannot afford having your child develop kidney mishaps.

You know you are not in Kansas anymore when you have medications, formula, and feeding bags and other medical paraphernalia delivered at your doorstep each month, and your son gets excited with anticipation on opening these packages because he wants to know if his guess is right (are these meds, feeding bags, or milk?)… I think though, that for him, it feels like Christmas every month.

You know you are not in Kansas anymore, when questions such as how’s the baby doing does not bother you anymore, nor do comments such as, “Oh they grow up so fast.” Because you know your baby doesn’t… and it’s okay, and I really really mean it when I say that.

You are not in Kansas anymore when you find yourself getting excited about friends and family having new babies because your child can have a playmate and you get better and better each time at accepting that that same child who once was a playmate will surpass your child in development moving on to other playmates... because you know that more new babies will come to play with yours. You know that surely your little one will not be little forever, they just take longer to grow, and that’s is okay, because you know that they will and that they do.

You know you are not in Kansas anymore when you have baby clothes of the same size for all four seasons that are mostly used clothes from other parents whose babies were born way after yours… and it’s okay because really the clothes are gently used and hardly worn and, most importantly, you don’t need to buy them anymore.

You know you are not in Kansas anymore when you try not to plan family vacations way ahead of time because you don’t know if something will come up…. And things actually become more exciting as your family trips are more spontaneous.

You know you are not in Kansas anymore when you realized that you have evolved into this morning person, and that 4 hours of sleep is a gift, and you can still get up, get moving and manage to look pretty in spite of that. And on having luxurious 6 hour sleep-in days, the sound of the overnight feeding pump running out has become your alarm clock.

You are not in Kansas anymore.

and you know you’re not in Holland either

All you know is that life has tremendously changed you and wherever you are is where you should be… and it feels just like HOME.

Flowing from Refusal to Acceptance

You know how when something does not work for you or you don’t like something you were told, taught and raised to say “No”  to it.

To refuse it.

Or to be an agent of change when the situation you are in isn’t ideal.

It is when you get older that you realize that there are things that you cannot change because it beyond your control… maybe even perhaps beyond changing… and so you just have to accept it. When you get older somebody or something (or your own realization perhaps) suggests it is YOU that need to be changed (your perspective) when you are challenged with things that seem unchangeable… or ARE unchangeable…

But nobody really tells you about the process that this entails….  Becoming the chang-er to being the change-ee is not an easy transition.

At first I think it would feel just like the struggle and battle with the pull of an undertow…. you somehow give up and let the tide just eat you, but then the mere act of the letting go is actually what saves you and you find yourself on the surface of the water… tired, wet, disheveled, but alive and breathing nonetheless.

This is why coming out of that sate of denial, anger, and grief is a tough journey… and you still often find yourself in places questioning where you are at.

While acceptance does not necessarily mean you’re happy…. That place where you realize that you’ve learned to go with the flow is a step into the right direction.

22 Month Update

After about a 2½  month hiatus, I finally found time to update Isabella’s blog. 

Here is her 22 month developmental update.

o       Isabella managed to recover her sitting and crawling and eating skills back two weeks after her big seizure in July 29^th.

o       She is currently close to being 18 lbs and is eating stage 2 foods. She is already opening her mouth and uses her lip to scrape the spoon when we feed her, although I feel that eating is still not her favorite activity.

o       It seems that she is starting to shake her head to say NO. She does this a lot during feeding time. She starts it as soon as she sees us getting some food from her bowl and the shaking goes fast when the spoon leaves the bowl and much faster when it comes close to her mouth. She is probably thinking that if she moves it fast enough, we won’t be able to catch her mouth. 

o       She shakes her head as if to say NO too when we tell her that it’s time to nap or sleep. She also does this shaking head thing when her eyes are getting droopy as if to wake herself up. We would see her on the video monitor making herself stay awake when she rouses at 3 in the morning. 

o       She pulls her self up to stand. I think she manages to cruise every now and then, ‘cause we’ll see her on one spot on her crib and we turn for a brief second and she’d be facing a different direction or be on a different spot.  She does this too on the edge of the couch. I have yet to catch this on video.

o       I found my favorite kissing spot, that’s the space by her nose in between her eyes.

o She makes happy vocalization sounds when we do cuddle wrestles or when she gets some of his brother's toys, as if to rejoice that she has conquered something. She bounces up and down too when she does this. 

o We  know when she is upset. She makes this unique, "I'm upset" sound. She gets upset when we take away something that she gets into, which are usually the things that she finds us fiddling around with. Things like the remote, or our cellphones, or the laptop, or her brother's Legos, Beyblades, etc. First she makes this happy sound and bounces up and down because she has conquered something, and when we take it away she does this whole other sound and does this thing that looks like she shakes her fists in the air. Oh my... what a brat huh?

o       I love it when I find her looking at me from the far end of the room and I smile and she smiles right back at me.

Check out the video of Isabella pulling herself up to stand… 

WE ARE SO PROUD OF HER!!!

See how she did on her last developmental update by clicking here

bloopERs

Having a child with seizures means out of the blue 911 calls, ambulance trips, and a one time airplane ride to the closest Emergency Room.

Having frequent trips to the ER, starts off with us being an emotional mess, then we become an anxiety apprentice, then we move up to a composed looking adrenalin running junkie. Now, with all the ER madness, there is of course room for the inappropriate awkward funnies that we realize only in hindsight when seizure shenanigans have settled down.

Here are some of our ER bloopers....

The This is Not Social Hour
While the ER medical team was in the middle of trying to control Isabella's first grand mal seizure, I realized that I knew one of the nurses taking care of her, as she was the parent of one of my former students. In the middle of the serious stressnesses going on I blurted out, "Hey, I know you. You're one of my student's parents. How have you been and how is your son?"
What? You want to catch up right now, when she's busy intubating your daughter?


The Famous Dr Potter
On one of our more settled moments in the ER (if there is such a thing), the ER doctor asked us about issues that our daughter has. When we got to the part wherein we mentioned she has renal issues, the doctor and I then had this conversation...
ER Doc: So who is your nephrologist over at Packard?
Me: Dr. Potter
ER Doc: Oh you are so lucky. Your doctor is world famous.
Me enthusiastically: Oh yeah really? Just like Harry Potter?
Connected? Duh, I don't think so? Makes for some really intelligent conversation.


The Unnecessary Trivia Time
When Isay's seizures were finally controlled, the ER doc gave us  a run down of medicines that they gave Isabella.
ER Doc: We gave her doses of Verced, Ativan, and Phenobarbital. But even while she looked like she was still, she was still seizing in her brain. So we need to make her go into a really deep sleep to stop the seizures, so we gave her some Propofol.
Husband in a very enthusiastic manner: Oh! That's the medicine that killed Michael Jackson!
What? Is it trivia time? Was that the daily double?

The Hugger
Isay had a seizure when we were vacationing in Oregon so we had to call 911. We were taken to a hospital in Florence, Oregon. Being a small town, the hospital was not well equipped to handle cases such as my daughter so they called Doernbecher hospital up in Portland and they flew in to help. The Portland OHSU team has taken over the care of Isabella and was able to finally stop the seizure activity. As we were getting to ready to leave (which was an ambulance trip + a small plane ride + another ambulance trip to get to OHSU, Portland), the ER nurse that stayed with Isabella the whole time while she was seizing (4 hours total), touched my shoulder, and I immediately leaned in to give the nurse a hug. Somewhere there I also managed to do a hug with a head leaned on the shoulder, only to realize that what the nurse was actually doing was reaching behind me to reach for the chart in the cramped ER space where I was standing at.
Now, this was a man nurse... an old man nurse. I thought he was being kind that I even leaned my head on his shoulder. Now, I don't recall specifically if I even wrapped my arms around his waist, but there is a good chance that I did. No wonder he stiffened up!

She's CRAWLING!

One ordinary afternoon in July, my Isabella started crawling!!!

She has been working on this skill for a loooooong time, and now we can check it off the list!

HAPPY TIMES in our home.

Check out the video.

In case you're wondering she is 19 months old and is 15 lbs in this video. 

To see the previous developmental update click here

The Journey of A Lifetime

It’s going to be the road trip of a lifetime.


I made my list and have packed my bags and made my go, do and see plans for when we reach our destination.

However, I didn’t have a plan for when the travel does not start the way I want it to. In spite of the regular oil changes and upkeep, and diligent car maintenance checks it was almost inconceivable that the car will just not work the way that it should. The engine is not running the way it should, and its making these other noises rather than that low rhythmic hum, and when it reaches a certain speed the whole car starts to jerk and I have to slow down. Looks like were not going to get to our destination as soon as it was planned. I have no other choice but to take things slow.

It’s going to be one really long road trip.




It does not help that we hit the occasional pot holes… it adds on to the worry that the car will deteriorate further. But we try to be careful, even though sometimes it seems unavoidable to hit a bump on the road. But keep trying, we still do and we focus all our energy on getting to the planned destination.


And so we keep driving, slow as we may be.

Tension builds up when a car is tailing right behind us, seemingly nudging to make us go faster. And at first it was quite embarassing that we are driving way below the speed limit. And as more cars pass us by we became more anxious... Are we really that slow?

As we push on forward, there are times we find ourselves in envy of the other cars and SUVs that speed on by. There are also moments where we find ourselves cursing at the sports cars that cut ahead without even the courtesy of using their signal light. And other times, we find ourselves in moments of madness to catch up with at least the regular sedans that pass and sometimes even more so for the cars that have the same make us our own but still are already way ahead of us. Eventually, we understand that even if we step on the gas further down as we could, it could only speed up as much as the car wishes to. We have no control of how much we can actually accelerate.

We have our travel time table, and just like everybody who is travelling on a road, we want to get there on time. But with things not going the way it should, at least for the vehicle that we are driving, that travel time table will have to be tossed out the window. So much for thinking we could get there on time, or at least just a couple of hours late.

 


We drove on. Slow and steady wins the race as the saying goes.


But wait… what is this smoke coming out of the hood? There are no potholes? We kept our speed at the bare minimum. Uh, oh, looks like we are stopping. Stopping for good? Oh I sure hope not.

So we called the emergency road side assistance. They tried to see what was up with the car, and with that sad sorry look we were told that it can’t get us to where we plan to go... “It’s just not going to make it.” So is this it for us? But we have plans and we want to get there.




Well, we are already on this road, and do not want to be stuck here, and clearly we have to at least go somewhere. So how are we going to get there and where is this place?


We decided to rehash the old plans, and make a new one. The broken down car, we planned on not forcing it to go on and traded them in for bicycles. And the luggage? Well we have to do with just the essentials. Travel light and let go of the unnecessary stuff.

Oh, and we need a map! So let’s see, where do we go, without thinking too much about all the mile posts along the way, to get somewhere for however long it takes?




Starting the trip on the bike is the hardest part. You wonder about the road you’re traveling on and you worry if it would really take you to “a” destination… and you do this despite of checking your map over and over again. There’s also the feeling of exhaustion, and the occasional flat tire, or the fixing of a bent wheel, and the nursing of a wound from falling. But you have to just keep on moving forward if you want to get somewhere. Eventually the training wheels can come off, and you get your sense of balance and rhythm. You start enjoying the feel of the warm sun and the cool breeze, and the remarkable smell of the nature filled air…. Most importantly, you get a sense of freedom that you have not felt in a long time. Occasionally, you even impress yourself cruising steadily with your eyes closed, and from time to time, you surprise yourself even more that you can let go of the handle bars. There are also these intense moments that you catch yourself thinking that getting to the destination does not seem to matter anymore, for the journey is good enough in itself.

Being on a bike trail does not always guarantee a smooth ride. There will be times when you will need to give yourself a push and that extra effort to be able to ride up that steep slope. There are times that you will feel afraid and out of control as you go on a downhill trail. There are also times that you will be cruising steradily on a smooth path. Other times, you might need to walk it off, and still there are also other times that it might be necessary to just stop to be able to to take it all in, or let it all out, or to just simply recollect or reflect. But, it is important to never forget to keep on going. Because the more you try to ride the variety of paths set before you, the more you will start feeling less unsure about yourself and the better you get at maneuvering your way through. You also feel stronger each time you fall off and you get better and better at getting back on.



The good thing about traveling light on a bicycle is that you do not travel on the typical road. After all, there are rules against riding your bike on freeways, and not all freeways are bike friendly, although I think all roads should be bike friendly. Anyways, because we have our own road cut out ahead of us, there are untypical stops that we make along the way. The stops that a 4 wheeled vehicle cannot possibly go to, and this is not a bad thing, in fact if not for our car breaking down, we could have missed out. We’ve seen beautiful pastures with brightly colored wild flowers, thick green forests, rippling streams, majestic rock formations, astounding waterfalls, passionate sunsets, hopeful sunrises, and grand rainbows that can only be experienced being on the bike trails. There are also ravines and canyons that are breathtakingly spectacular.

Being on a bicycle, we get to breathe in life and realize how small we really are in the grandest scheme of things, but at the same time we don’t feel insignificant at all for we all have a purpose. This journey, on this bike, is my purpose.

We’ve met other bikers on the road as well. We trade bike travelling tips and some stories. Some stories exchanged are scary, some sad, some crazy, some funny, but all in the end coming out of it beautifully changed by the journey.

 
 
You see we plan on still getting there and we will get there, but where exactly is “there” is going to be a mystery, and I have a good feeling that it’s going to be a sweet surprise. Who needs a trip, when I was afforded a journey?



I have been driving down this wonderfully designed road for almost 2 years now, just us… and our bike.

Building On The Dream

I always dreamed of becoming a mom. It was my ultimate dream. I wanted to have 2 children. First a boy and then a girl. Come to think of it, I did get what I wished for. First my son, then Isabella. I have to admit though that I was scared of having a girl. I felt that girls would take more to raise. I felt that girls being a bit more emotionally sensitive than boys, I can easily make mistakes that can scar them emotionally for life.


Now why would I even think this? You see, I did have a complicated childhood. My dad passed when I was young and we were raised by our mom. My mom, from my perspective was very critical, at times physically abusive, and many times verbally abusive. She was also rarely at home. I felt that, for the most part, I was really raised by the nanny and eventually by ourselves. I had many mommy baggages… trunkloads of mommy issues. This is why for a time after my son was born, I didn’t want any more children, and should I have another one, I wanted another boy. But, as luck would have it, around August of 2009, the ultrasound tech surprised me with the news that I was pregnant with a girl. And I was terrified with the impending future that a girl would be an emotional roller coaster ride. I was already scared of the what ifs and the prospective emotional damage that I would be accused of inflicting that my daughter would angrily hurl at me when she comes of age. I was already thinking of whatevers and scenarios to always be conscientious of what I went through so as not to inflict the same scars that I used to bear. But I know that I can’t be the perfect parent, but I can certainly try. And so, I made a promise to myself to be the best mommy in the world, and when I was pregnant with Isay, I prayed to God every night to help me through raising a daughter of my own.

Then came the diagnosis and the shattering of dreams… and of course that mommy guilt magnified ten times over.






It was later on that I realized that since I prayed to become the best mommy in the world it was exactly what was presented to me… The opportunity to become the best mommy in the world… or to at least keep trying to be. Not in the way that I conjured it to be, rather to be that mommy that will support her daughter every step of the way… that mommy that will not leave no matter the circumstance. That mommy that will always have the best interest of her daughter at heart and would fight to get what she deserves. That mommy that will not take anything for granted, and will invest everything she has, her time and her energy and all that she has to give. That mommy that will always put her child’s needs first before her own. That mommy who will always be encouraging and will always believe. That mommy that will always be proud of her children.




Now, for many nights I find myself praying, by god's grace, to be able to handle this... that I was cut out for this huge of a task and immensity of ambition.




The dream is still there, and the chance to make it a reality is still here. Not in the way I pictured it to be, but it most certainly is still a good life to build on that dream.

And all things, whatsoever ye shall ask in prayer, believing, ye shall receive.

Matthew 21:22

18th Month Update

The Stats:


Weight: 14 lbs 8 oz

Length: 27 inches


The Highlights:

• We just recently had our second VCUG and Isabella’s stage 3 kidney reflux has been resolved. That is one less doctor and one less prescription meds to deal with.

• Isabella is still at the beginnings of becoming a crawler. She knows how to alternate her arms, but somehow still needs to motor plan alternating her legs efficiently.

• She loves being naked and she loves her feet.

• She discovered toys. She would shake a bell or a rattle. Grasp on some beads and flail it around. But we don't need to bother on going crazy shopping for toys that light up, spin around, or those that make those annoying-drive-you-crazy sounds (thank god!), because her favorite play thing is paper. She loves to pick it up and move it around so it makes that rattling, flapping, crunchy sound… We can hand her our junk mail and she'd be the happiest girl in the world. RECYCLING! 

• She is becoming more “nosy” about what is going on around her. She is starting to get into our things, like picking up ( using a palmar grasp) her brother's toys, make a mess of mommy’s papers, and dive into the tower of folded laundry that her dad just made. The other day she even managed to rip some papers. What a typically developing thing to do! =D

• Sometimes, we would be engaged in “circle of Hmms” at home. What I mean is that she’ll make “Mmmmm” sounds in various pitch, tones, volume and inflections and we would answer back with “Mmmmm” in various pitch, tones, volume and inflections. It’s like having a conversation with her without really knowing what it is we’re talking about, only that it is fun for us and always funny for her.

• She is a drama queen. She wants to be in close proximity at all times and is a master manipulator in getting people to pick her up and hold her. She does not talk us into picking her up… it is more of her “grunting” us into it. Now I know what the other WHS mommies are talking about when they say that their children may not talk but they sure can get their message across, and the message is loud and clear!

• The “W” sitting is still there, but she can manage to fix her legs and bring them to the front on her own (about 3 to 4 out of 5 times she will fix it) and keep herself sitting like that without having to topple backwards.

• Her feet seems to be growing inwards… its most likely because of all that “W” sitting. . We need more insight from the therapists regarding the need for orthotics. Although it is not that pronounced, it is something to watch. The PT says that orthotics might not be necessary for now. We figured that since she is still learning how to crawl, orthotics just might get in the way. So, it is something on hold for now.

• We were proud that she was bearing weight on her legs and standing up, only to find out that what she is doing is locking her knees. We were told to discourage this and to focus on the crawling. We're still proud of her of course, but the standing thing would have to be something for another time.

• Her teeth came late in her development, and now it seems that all her teeth are coming out at the same time. She already has two at the bottom and the one tooth at the top (the midline incisor that the neuro saw in her MRI… we are only expecting one tooth at the top btw). She also has two molars at the bottom and her gums are still swollen and after a "feely" inspection of her gums, it seems like we are expecting a couple more molars to come soon.

• Before all these multi-teething we have been weaning her off her overnight feeds and have been successfully feeding her a variety of semi solid foods during the day time and throw ups almost seem like a thing of the past. It felt that the G-tube was non existent during the day... but things sometimes being too good to be true and with what looks like "teething-trauma", all oral feeding has slowed down, over night feeds have been increased, and daytime G tube feedings have been resumed... and because she's on a fluid diet, the puking from the past is once again part of the present… and yes, we caught on quickly on the cleaning after her throw ups quite well. It was almost like muscle memory, or something like that. We call ourselves the puking pros, we know by ear if something's going to come back up (puking ouido).

• Since she does not need her daily dose of antibiotics for her kidney reflux, I feared that her fighting off anything that she can catch in the air will be all her doing. This would be a good chance for us to really see how good of an immune system she has. Although the immunologist does not suspect any immune system issues, I wanted to see how Isabella can handle “fighting” the world on her own. We eventually do want to bring her with us on a plane and be able to fly home. And so my fears being put out there have once again became soemthing that I have to come face to face with (not to worry... I'm fine...I've become a pro at facing my fears)…. the other day, we saw some blood on her ears. Upon careful inspection we saw that this was not dry blood rather some kind of a wound inside her ear. We immediately set up an appointment with her pediatrician and as it turns out she has an ear infection… a major one with blood and pus. What was weird was that she was not in pain, nor was she crying nor anything out of the ordinary at all…. No fever either. She was just her regular self… always smiling, picking up a rattle and shaking it, nosing around on our things, not eating much, and some puking here and there. It is a concern that she was asymptomatic…and being that how would we have known right? It could also be because, in comparison to all the other things that she has already been through, an ear infection is a piece of cake.

This is her... a couple of minutes before we saw the blood in her ear.

Does this look like a girl with a major ear infection?

I think this little girl's job is to just shake our world and smile to let us know that really we have nothing to worry about. 

 To read about her previous development update, click here

Of Siblings and Somethings

I fear that my son sometimes feels put aside because we need to attend to Isabella’s many needs. I fear that I may overcompensate. Yet, being conscious of this fact, I fear that I may not give him enough.




It has happened three times that we need to cancel a promised family trip. My son was so looking forward to each of those trips. Somewhere there we may have built him up to think that those family outings are his reward. Every single time he takes it hard whenever we need to cancel and move plans.



The first time was when Isabella had her first seizure. It was the day before our promised trip. We were ready to go. The hotel has been booked and we have our printed E-tickets packed with our luggage. Then we had to tell our son that our trip would need to be move to another date. He took it hard. But eventually he came around.



The second time was when Isabella seemed to be catching a cough and cold two days before the scheduled trip. It was the dead of winter, thus it was cold and freezing and there was some rain. We had to cancel our plans. Again my son took it hard and this time he asked us why things need to be moved all the time. It was a bit hard to explain that sometimes things change.



The third time was when Isabella had her 3rd seizure. We were going to the aquarium the following day. When he realized that seizure meant hospital and parents staying in the hospital, he kinda already knew that this translated to…. you guessed it, having to move our plans again. This time, I need not explain that things change. He already knew that. What he has a hard time understanding is why they need to keep changing.



A couple of days after the cancellation of our most recent trip, my son was asking when we can go reschedule our trip to the aquarium. Since Isabella was still a bit recovering from her seizure stint, we told him that we can schedule it on the weekend. However, he wanted to do it the following day and when I asked him why he said that it’s because he does not want it to change again so he’d rather already get it done tomorrow. I had to explain that his sister is still recovering, but he would not have any of it. He started crying silently and then I saw him push her. My son pushed Isabella.



While there is no excuse for this behavior. I was torned between understanding my son’s feelings and yet at the same time not having him be that person who would treat his sister that way. I asked him why he pushed her and he immediately hugged her, apologized, and kissed her on the head.



Does my son feel that he has to be pushed aside? Did he think that we favor Isabella over him? Does he resent her? Or is this just me reading into this more than for what it is? For all I know this is just one of those typical things between siblings. But the questions still linger, and I wonder about how I can find that balance in the not overcompensating and being able to give what is just enough to not have him feel neglected.

They have a secret.... he loves her and she loves him.

Mayday on One May Day

It was one of those typical days. We have our routine going on and everything was just how it should be. It was close to 8pm, around after dinner, and we were with extended family at an aunt’s house. I was helping to clean up after dinner while the husband was getting ready to pack up and leave. My son was enjoying himself as he played and laughed with his cousins. I was getting ready to wash some dishes. I then heard my husband, calling for me from the living room, asking for some assistance as Isabella started throwing up. I took some kitchen towels with me on my way.


When I got to where they were at, I saw that look on Isabella’s eyes. That look that I saw 6 months ago. That “focal seizing look”. I then told my husband that I think Isabella’s having a seizure. He didn’t think she was and even added that Isabella is just sleepy (which of course a possibility since it was already close to 8pm… her bedtime). I insisted that she was seizing and went to pretend to put my fingers to touch her eye just to demonstrate, and make a point, that Isabella was just staring emptily into space. She did not blink. My husband was trying to talk to her… distract her, to demonstrate his point that she was not seizing. I still insisted and told him that this “look” was the same look I saw that first time that she had a seizure. I started looking at the clock while he took Isabella to the bathroom with her Keppra medication as it was almost time for her to have it. He gave it through her g-tube.


I started collecting our stuff…. The whole family oblivious of what was already going on. Then followed my husband to the bathroom to check how things are going. She was throwing up her meds, looked weaker, tiny twitching started to happen. I told him that it will be 10 minutes in 2 minutes. My husband finally acknowledged that it was indeed a seizure and asked for me to come get the Diastat.


It took awhile for us to figure out how to open the medication. We had to re-read the instructions. We kinda both forgot how we were told to administer it. When we finally able to give it to her, I asked my husband what happens next. He said that it is supposed to take effect immediately as it is administered rectally. We waited. I was still watching the clock.


I went to my aunt and told her that Isabella is having a seizure and if it does not stop we would be calling 911. My husband called our son to let him know that his sister is seizing. We wanted him to see what her seizure looks like. He figured that had this happened on our drive home we would not even know that she was already seizing in her car seat and since her brother sits with her at the back of the car, he can help us see it.


My son already knew what this meant…. He was going to stay behind while Mommy and Daddy leave to go to the hospital. Thank God we were at a relative’s house.


10 minutes passed (which actually felt like forever since the seizure started), and the seizing has not ceased. I called 911. I stayed on the phone and my husband was talking to my aunt figuring out logistics for Eloi and driving, and pick up, etc. We were quick… we were thinking straight and we were on top of it. I stayed on the phone with the 911 dispatcher and waited for the paramedics to arrive at the front of the house. When I heard the sirens coming closer I called for my husband. When the paramedics arrived, instead of having them come to Isabella, we took her to them. It was one less trauma for all my nephews and nieces and the rest of the family to see. My husband and I were calm and collected…. Unusually quiet, but calm and collected nonetheless.


I rode the ambulance to the nearest hospital. My husband followed. When we got there I gave them the rundown of things that she has. I could just tell them the name of her syndrome as that covers all of it, but since it is rare, and they can’t even spell it, I had to name them all her complications one by one. I have to stress over and over that she has kidney issues just to make sure that they will not give her anything that can damage her kidneys. We would not want to add one more thing to the already long list of things. I sat and watched them work on her.


The ER team poked and prodded and administered does of different kinds of medicines. Then they decided to intubate… I felt it was not necessary but let it go, as I know that they are doing their best and following procedure and have every good intention to help my daughter get through the seizure. I can’t really do much, but to wait and watch and pray.


We were asked questions and we filled out paper work… an hour after we got there, the seizing finally stopped and Isabella was heavily sedated on the ER bed. That’s when we started talking to them about taking Isabella to Stanford as that was what was done the first time she had a seizure… and also because they know her there. They called Stanford and their team will be coming to get her. They got there passed midnight and we were settled in at Stanford around 1am.


The first thing they did was extubate her, and while we were there Isabella was trying to wake up. She was groggy and crying, but awake. She needed to sleep though but she kept trying to be awake. Eventually, after trying to fight the meds, the sleepy meds took over and she was asleep.


My husband and I were not worried nor were we crying. We were just there. A little stoic maybe… but we were there. We started talking about how to break the news to our son that we would have to postpone our trip to the Aquarium the next day (one of the three trips that we already promised me but didn’t get to go because something comes up with Isabella that prevents us from going), planning how to get our son to school on Monday, how to get a substitute for work, how one of us would have to go home and one stay at the hospital. Then we remembered the dog we left at home in her crate (poor doggy… she would have to go make sacrifices too).


The next day, the first thing that Isabella did was try to sit up. She was still too weak and groggy from the meds that she can’t. She was grumpy and crying. After rounds we were told that they need to adjust the meds. They suspect that the seizure happened because she was already bigger and the dose was not enough. A little later after a consult with our neuro, we were told that she was going to be discharged.


When we got home and got settled in, and perhaps after all the adrenalin has left my system, I finally found the time to feel and cry over what just happened. I was worried about how the seizure is going to affect her development. How far back will Isabella lose the skills that she (and everybody working with her) worked so hard to develop?


When I awoke the following day, I saw Isabella sitting like she used to, rattling a toy and smiling as if nothing happened. My girl is so resilient…. Mama’s got to learn how to become more like her.

Ready for a garden tea party!

(This picture was taken that afternoon before Isabella's seizure.)

My Two Boo's

Here is a video my son booing his sister.

Pardon the "W" sitting as I did not want to interrupt their happy moment.

My "Changed" Life

“Your life must have changed after having been given a child with special needs”.



Someone told me once… and yes, I may have to say so that my life has indeed changed. But doesn’t every baby, special or not change you in a way?


Sure we have more doctor’s appointments to keep, more specialists to meet, and more prescriptions to fill than the average family. We have a nurse instead of your standard baby sitter, and specialists come to our house instead of us taking our baby out for play groups.
We will be spending our money longer on diapers and formula and maybe even co pays…. But we get to save on baby clothes, because our daughter takes her time to grow… so that is savings that can go in the bank… Cha-Cha-Ching!


And, yeah, we don’t really need to stay up all night feeding our baby because a kangaroo pump does that for her, but we still have our share of sleepless nights and restless days,  because just like the “others” we do still deal with colic and constipation and teething.

We probably spend more time at the hospital than any typical family, but at that hospital, we see other parents like us who have put in their hospital time as long as we have and we feel no different from them. Actually, in a way, we feel a bit ahead from the typical parents because if we need to have our baby stay at the ICU, we have the most expensive baby care team in the world watching her while we go out and have dinner... Date Night!

Our typical-parents-with new-baby counterparts go look at calendars and dates and proudly talk about milestones and how old their babies are, while we try to stay away from developmental charts and just focus on our daughter as an individual and beam with pride to see the upward curve on the growth chart she made specifically for herself…. But that really does not make us any different. We beam and boast just as much as the typical parents do no matter how trivial and small they interpret our achievement to be.

“Oh my Isabella didn’t throw-up all her feeds today…. Good job baby girl!”


That feeling of pride we feel as parents is no different from theirs…. Though,I may be a bit modest there…. Because honestly, those “little trivial milestones” took a lot of hardwork, and really our pride is magnified 10x more than that of the ordinary parent. So in that respect, really we are better of… but really, its not something to brag about… even if it is... so I won't.... I mean, I will try not to.

We will be packing a diaper bag and a stroller with us for a longer period of time than the "normal" parents… and our baby will stay younger longer for what her actual age is… but so what?

All that time we have ahead in the infant-to-baby-game makes us experts in the diaper-bag-bulky-stroller-hauling- and moving-business. We can have our eyes closed and still be able to formulate the right consistency for semi solid baby foods. We also look great doing it. No baby weight to lose, no more sticky-hair-sleep-less-nights-i-look-like-a-mess days... well maybe not a lot of that, and most definitely not a night-after-night-after-night (mare?) ordeal. Most importantly, we can have her and baby her for longer than any other parent in the world.

And the tears? Sure, there are lots of them, maybe more than what is considered "normal".... but what else is out of the norm is the amount and intensity of the "tears of joy" we get to experience. There really is nothing like having tears of joy... imagine that intense feeling of tears from sadness and grief, and flip it to the other side.... hard to imagine huh? ...we'll if you could only be me for a day, then you would probably understand where I am coming from, that is if a day would be enough really. Oh, we have many many many tears of joy to enjoy!


So, did my life change?

It most definitely has….


Who wants to live an ordinary life anyways?

The Many Different Reactions of People

I find it amusing watching how people react upon mentioning that my daughter has a disability. Well at first I felt very defensive, sometimes ashamed… but now, even if I still lie about her age to most people, I take no offense in the oftentimes off reactions of people. Its sort of like being a part of a social experiment... sometimes shocking, sometimes dumbfounding, sometimes awkward, but most times amusing. Here are some of my classic experiences…



The Awkward Silence

Lady: Oh, look a tiny baby. How old is she?
Me: She’s 10 months.
Lady: No! She can’t be 10 months. She’s too small. Is she a preemie?
Me: No… she has a syndrome
Lady: Silence…. A really long and awkward silence.



The That’s Lucky

Most of the people in our church community are aware that many daughter has special needs. They may not know exactly the name of the syndrome she has, or the many complications that came with my Isabella having the WHS, but they know that my daughter has special needs. So it’s not really a surprise is a curiosity will propel someone to actually approach me to ask about details….

Lady: So you’re daughter has a disability?
Me: Yes. She has a syndrome.
Lady: I heard she was just at the hospital and was in the emergency room.
Me: Yeah, she had a seizure.
Lady: Oh, I’m sorry…We prayed for you.
Me: Oh thank you for all your paryers.
Lady: You’re lucky do you know that?
Me: I guess so.
Lady: Watch it. You’re going to win something big.
Me: Like in the lottery or at the casino?
Lady: Yeah. Cause having a baby like that is lucky.
Me: Oh I hope you’re right.
Lady: Watch it and you’ll see. That’s lucky.



The Is Something Wrong With Her

Lady: Oh, look at this small baby. Is she a preemie?
Me: No… she’s just small.
Lady: Is something wrong with her?
Me: No, nothing wrong with her…. She has a syndrome, but nothing is wrong with her.

The lady then, with that pity look in her eyes and a small smile on her lips, touches me on the shoulder, touches the baby’s head, then walks away.



The What’s Up With Her Eyes

I was at the photo store picking up a set of pictures. I was reviewing them on the counter when the lady behind me goes

Lady: Oh look at those baby pictures.
Me: Smiled
Lady: Who’s baby is that? What’s up with her eyes?
Me: She’s mine. What do you mean what’s up with her eyes?
Lady: Oh, I’m sorry…. Then she immediately walked away.


What I really wanted to say was…

Me: What?!? Her eyes are not proportionally spaced enough for you !?!



The She Looks Like an Elf

I brought the baby with me to work one time. Most everyone at work know that my baby has a syndrome. Not everyone know the details, but nonetheless its common knowledge at work that my baby is a special needs baby.

Co teacher 1: Oh look at her. She’s looking around.
Co Teacher 2: She seems aware of what’s around her

Isabella then smiles, moves her hands around and kicks

Co teacher 3: Oh look she’s smiling.
Co teacher 4: And she’s looking at you
Co Teacher 5: It seems like she knows you.

(Duh? I’m her mom?)

Co Teacher 6: She’s just really happy and smiling.
Co Teacher 7: Yes she does.
Co teacher 8: She’s so cute.
Co teacher: 9 She looks like an elf!


I know they all mean well and most of them just probably don’t know what to say, or how to react but wanted to say something. I’m sure when they saw my Isabella, she was not what they were expecting her to be. They were probably thinking that my baby is a non responsive vegetable, and while I do respect all that, and honestly take no offense at it, I was surprised with the “elf” comment.



The She’s Not 15 months

So, this follows the story of when I brought my daughter to work…

Co teacher 1: So, how old is she now?
Me: She’s 15 months.
Co teacher 2: No, she’s not 15 months?
Me: (I’m thinking, Are you seriously saying this?)
Co Teacher 3: Is she really 15 months?
Me: Yes. I’m sure. (Are they doubting me… the mommy? )
Co teacher 4: She looks more like 4 months.
Me: Yeah… she’s the size of a 4 month old. But I’m sure she’s 15 months now.

What I really wanted to say was…

Me: Yeah… remember? About 4 months ago I had a baby? Remember that?


This whole conversation with my co teachers kinda surprised me really coz I what thought was common knowledge, I guess isn’t really “common”.



The Don’t be Frustrated

We work with many doctors/specialists. Out of the many doctors we work with, we only met one who has actually met or seen another child with WHS. This one time that we had an appointment with him, our conversation went like this...

Doctor: Tell me the things she can do now.
Me: She rolls, she puts her hands together, she outs her thumb in her mouth, and she can sit supporting herself with her hands.
Doctor: Does she smile?
Me: Yes she does… she smiles a lot and at everyone.
Doctor: (To Isabella) Are you going to smile for me little princess?
Me: Go Isabella, smile for the doctor, come on… come on.

Isabella does not smile.


Doctor: That’s okay. She’s probably smiling and you just don’t know it because of the down turned mouth that WHS kids have.

Me: Oh, but she does smile and you can really see it. Come on Isabella, smile for the doctor.
Doctor: That’s okay. You don’t need to be frustrated. I’m sure she’s smiling right now, but we just can’t see it.
Me: (I’m thinking… but I really do see it and its an obvious smile, and I’m not frustrated because she does smile and, no… I don’t think she has a prominent “downturned mouth” that I can’t tell if my own daughter is smiling).



And this is my most favorite…
The My Condolences

I have not spoken with this friend for a loooong time. I was busy with my pregnancy with Isabella, and then dealing with complications towards the later part of the pregnancy and then the long list of things right after she was born… when we finally got the chance to talk, here is how our conversation went…

Friend: Hey. I have not spoken to you in a while. I hear all these things through the grapevine about what’s going on with your daughter, but I was not really sure until I actually get to talk to you. So how is your daughter?
Me: It’s a long story. (Then I started choking on tears). She has a syndrome and she has all these complications. Underdeveloped brain structures, fluid in the brain, brain cysts, liver cysts, hearing loss, small kidneys, acid reflux, kidney reflux, cleft palate…. It just seems to go on and on…=
Friend: So how are you?
Me: I’m coping… I’m trying my best.
Friend: Well… my condolences.

Now this got me thinking…. Is my condolences something you say when you send your sympathy in general, not necessarily, specific to someone passing away?... I’m confused.

15th Month Update and Annual IFSP

We had an annual IFSP for Isabella just recently. Right before the meeting, I found ,yself reviewing the IFSP from a year ago and the one done 6 months ago. For both IFSPs no goals were met and her developmental level at 9 months was that of a 0 to 3 month old. I do feel that Isabella has made great progress developmentally, however most of the progress she makes are the tiny steps that leads to the major goals that the IFSP team has developed. While reviewing, I felt that none of her goals were met and my perception is that her developmental level at 14 months was that of a 4 month old.

At the IFSP meeting, all the service providers were there. We briefly discussed birth and medical history and the type and frequency of services that she receives. Then we proceeded to discussing what is current in terms of Isabella’s development.

• Vision is within normal limits as per last vision check up.

• Suspected hearing loss on both ears. With the right ear being on the moderate to severe range and the left at mild to moderate. Although this results are inconsistent with a sedated ABR done April 2010, where the results indicated the she has normal hearing in both ears.

• Cognitive skills are at the 3 to 6 month range. She uses her hands to explore her mouth, plays peek a boo, and her interest on toys that make sounds are emerging.

• Language skills are at a 3 to 5 month range. She shows interest in music and sounds. She also laughs when we play with her. She coos using “Mmmm” sounds.

• Social Skills are at the 3 to 5 month range. She shows interest in people and likes to watch them. She likes to be in constant sight and hearing of an adult.

• Gross motor skills appear to be at the 5 to 6 month range. She rolls both sides, hold her head up, and with assistance can support herself sitting with extended hands.

• Fine Motor skills are at the 3 to 6 month range. She can track objects, grasp toys when placed on her palm, put her hands and fingers to or in her mouth, and clasp her hands together.

• Self Help skills are at the 3 to 6 month range. Her cleft palate has been repaired and is being seen by a feeding OT. She is tube fed and takes in semi solids by mouth. She licks her fingers and will lick a toy when placed near her mouth.


She did meet 1/3 goals benchmarks that the team has developed (attention to a variety of stimulation, After the report, I felt that our estimation of Isabella’s skills were in the range, most likely the average level of the skills noted above. Old un-met goals (crawl, sit without support, grasp/pick up toys or small objects, and transferring objects from one hand to the other) were continued, and new goals were developed (play with toys, react to music by cooing, babble, pivot her body in prone, sit momentarily leaning on hands, and transfer objects from one hand to the other) .

We left the meeting feeling good that our daughter made progress. And I actually cried because she is moving forward, slow it maybe be, at least she’s moving forward.

However, when I found myself reading the report, I found that not only did they write where Isay is at developmentally, they also wrote in percentages how delayed she is… 79% delay.  79 out of 100.

I’m aware of the reality of it… and I’m still happy with what progress she’s made… but it hurt seeing that difference.

I gotta keep looking at the have's and focus on the positives.

To read about Isabella's development last month, click here

So How Are ‘We” Doing?

I have contemplated really long and hard on whether I should write about a post regarding, since having Isabella in our life, our marriage situation. I am not quite sure about how readers will be reacting to this post… however, since the main purpose of my blogging is to share my emotions to other “special” parents like me, I felt that touching on the topic of “marriage” is something that you people might be interested to read about as I feel that perhaps, I may not be the only one who awas faced with the challenging task of  trying to balance the marriage on top of the already many things I need to juggle.



I have dealt with the once dreadful questions gracefully…. How are you doing? How is the baby? I have figured out a way to respond without having the need to dodge them. However, I was not prepared to be asked the question, “So, how is your marriage doing in spite of all this?”… just like how the previous 2 questions used to affect me, getting asked this question threw me into a crying fit in front of the person that asked. And as much as I have tried to figure out how I can dodge or answer this question with the purpose of hiding how I really felt, I figured a healthier way to approach it is to actually deal with the reality of how our marriage was really doing. It was not going well then.


But, just like I have found a way, and I may have to say, I have come around beautifully, dealing with how I am doing and how the baby is doing, things managed to come around also with the status of our marriage.


Just to be clear, right now, I am doing well, the baby is doing fine, and my marriage is okay. It really is. Yeah, we have our typical arguments and finding our way around our differences, which every marriage has. We are doing fine. It was doing fine right before Isabella came into our life and it is doing fine right now. However, I would have to admit though, that since having Isabella, we did have a big strain on our marriage. That time in between having Isabella until recently, was not only a dark and difficult time for me emotionally, it was also a dim period in our marraige


Since having Isabella, we fought more than we used to. We argued more than we used to. And the differences, it almost seemed as if there was no going around it. What made it tougher is how we both dealt with the reality of our situation. My spouse and I deal very differently with disappointment, frustration, despair, grief, and anger. And since we were both dealing with the intensity of the situation we were in, we needed emotional support… support that we cannot give one another because we were both dealing, trying to deal, with our situation


We yelled, we hid, we tuned out, we walked away, we escaped, we blamed, we became verbally abusive, and things were thrown if not destroyed around the house…. and the moments wherein we would want to be passive the other one wanted to be actively dealing, and when the other one is actively dealing, the other one chooses to be in a passive state. It was almost as if we would never see each other eye to eye ever again and I felt alone, isolated, and taken for granted.


We were in pain that we demand for the other person to understand. We were hurt that we wish for the other person to be more understanding. We felt weak and we want the other to take in the role of being the stronger one. But we were both dealing with our pain… we didn’t have time to take care of the other person in the marriage since we can barely take care of ourselves. We wanted to be the one to be nursed and understood and heard. We each wanted it to be about our bruised selves.What made it all the more challenging is that we cannot just take care of ourselves or the other person with what left over time we could spare, we had Isabella to take care of and boy did she need a lot of our time.


The first year went by really quick. We were busy with doctor visits, setting up services, and remembering medications. But, in between the appointments, the phone calls, the specialists’ visits and the prescription refills, we would try to cope. It was not easy. Isabella took up a lot of our time and yet we also needed that time to try and heal.


In the middle of taking care of Isabella, and the trying to not overcompensate with our son Eloi, and our healing, nobody took the time to take care of “us”… and our marriage suffered. Our self absorbed “but what about me” approach put a big strain in our relationship and somewhere there came more disappointments to deal with, which for the most part was the disappointment of not getting the emotional support we each needed from that one supposed person to really get it, the spouse. And with the disappointments piling up came the frustrations which then led to resentments.


Honestly I contemplated on running away, leave him to deal with all this. I thought about weighing the risks involved just to have that chance to begin again. I thought about it long and hard. But my heart belongs to my children…. Both of them, and more so to Isabella. I figured our marriage can take a back seat for now and I have got to figure out a way around my coping and the taking care of the children. My husband is an adult, he has got to figure out a way to take care of himself without having to have me do it for him, right?


Eventually I realized, that I do need him... we needed each other. I need him to be the stronger one or at least try to pretend to be. And I have to be that person, pretend to be that person when he needs me to be that person. I realized that taking care of “us” is not an individual job, it is both our job. We need to be together in the doing. We needed to be together in everything. After all, that was what marriage is about… 2 people becoming one. So, we started talking, which was more of trying to reach out to the other tuned-out person at the beginning, which then turned into arguing, which later turned into discussions… to commitments…and eventually evolved into both us working on everything together as one. Just like how it should’ve been since the beginning.

I came to experience first hand how things sometimes have a tendency to get worse before they actually get better, but with that came the wisdom that things are indeed bearable when two of you share the load. I  know that we still have the rest of our lifetime to go through many rough patches and managing to patch things up. We have a long ways to go really, and we have a long stretch of time ahead of us to keep on wanting to work things out… After all that is what making a commitment to spend the rest of our lives together is all about.

I take you to be my spouse, to have and to hold from this day forward, for better or for worse, for richer, for poorer, in sickness and in health, to love and to cherish; from this day forward until death do us part.

So if any of you out there is dealing with a rough phase in your marriage, this too shall pass. Keep your focus on each other and your family, and when things start to look like they are getting worse, work yourselves through it, because in the end the risks involved in the leaving does not, by a long shot outweigh the rewards of staying. My advice is that, in the face of all the negative forces that you will be encountering, counter it with love and more love each time… and of course, you also need to put in a lot of prayer… only God will help both of you get through this.

1 Corinthians 13:7 Love always perseveres. (NIV)

Love always perseveres and never looks back. Love never stops, never quits, never doubts, and never goes against the good. Love never loses sight of the goal of glorifying God with all we have and with all we do. Love perseveres over all obstacles because the stakes of winning are so high even thinking about quitting is not an option. Love perseveres because Christ perseveres, because God perseveres, and because the Holy Spirit perseveres. These three in one are love. Love perseveres because love is too exuberant to stop. Love has so much energy within it no one can prevent love's upward progress.

14th Month Update

The Stats:


Isabella now weighs 13 lbs and is 24 inches long. We are gradually letting go of the 0 to 3 month clothes and saying hello to the 3 to 6 month sized onesies.



Medical Updates:

We had a number of appointments this month. We met with the neuro doctor and Isabella also has another EEG. There were no significant changes in the EEG results and there were no significant progress to report from the neuro-developmental perspective. It was just a simple follow up appointment. We also had an audiology appointment and with the several testing the audiologist has done, it shows that Isabella has hearing loss on both ears, with her right ear being on the moderate to severe hearing loss range. I found it puzzling that she has normal hearing for both ears for the sedated ABR done in April. I spoke to my speech therapist friend and she says that there is a chance that the test they did was just not developmentally appropriate for her. So, with regards to her hearing, we’ll just keep her fingers crossed, pray a lot and hope that her hearing is going to be fine.



Skill Updates:

• Isabella is better at supporting herself sitting down. Although she still can’t really do it on her own, and she will still fall when her arms are propped to support her body, we feel that it won’t be long that she will get to master this sitting-supporting-herself skill. Her head control is so much better and her back much stronger. She still likes being on her tummy but she has also learned how to enjoy sitting on her high chair or bumbo seat. She can definitely roll with ease and we will find her all over the blanket on the floor. This is a skill that is definitely mastered.

• She has found her feet. She automatically reaches for them when we take her clothes or socks off when we change her diapers. We have yet to wait for that time that she will explore her toes with her mouth.

• She still does not play with toys, her fingers are enough to entertain her as she will put it on her mouth and she will lick and drool on them. People are also very interesting for her. She likes it when we have company and she just likes to watch them. She’s definitely a social baby.

• She has done several social giggles. When we sing, make silly sounds, play, or when we tickle her, she will giggle. Although she becomes a “snob” from time to time pretending that what we’re doing when we play with her is not fun nor interesting. She can be a “princess” sometimes.

• Her core abdominal muscles are getting stronger. We believe that as her abs get stronger, her sitting will get better. We have found on her actually trying to pull her self up from lying down on her back. We encourage her to keep doing these “sit-up” like movements to strengthen her abs.

• She’s developed “separation anxiety” which made everyone in the Catiis home very happy. Whenever she cries because she does not see us or when she cries if one of us leaves, makes us all happy.

• We’ve been playing this adapted version of the peek-a-boo game and she smiles at us, sometimes giggles, and occasionally shrieks.



Feeding

• She still gets hooked up from 8pm to 8am on the kangaroo pump. We have seen less throw-ups, which is a milestone in itself. Very rarely will she throw up full feeds. She takes in 41 mls/ hour at night while on the pump and during daytime feedings she takes in 100mls. It has happened that she can take in full daytime feeds orally. She is less aversive to her bottle and she has, at times, opened them to welcome the bottle it. She cannot suck. She seemed to have lost it. We thought she would be able to when she got her cleft repaired, but she has not gained that skill back. Perhaps in time she will. She will gnaw or chew on her pigeon nipple and milk comes out. She has better swallowing coordination, but occasionally she still coughs. We were hoping that her daytime feeds will all be given via mouth… the lady that used to baby sit her did a really great job feeding her only by mouth during the day and she will take in all her feed volumes. However, that lady had to leave and so we are now back to tube feeding during the day, because the new lady watching her cannot get her to really eat all of her feeds via bottle and Isabella needs to gain weight.

• She had a cold and we were scared that if she gets sick she might have a seizure. She also cannot eat well when she had a cold. We would feed her rice cereal but she still developed an aversion for the spoon. In time though we think that she will get better at it. So far the cold hasn’t crossed over to making her really sick and it looks like there are no scary seizures coming anytime soon.



Upcoming

• We have asked and consulted with our doctors and therapists about seeing a pediatric chiropractor. They recommended that we see an Osteopath instead. I had no idea how hard it was to actually find a pediatric doctor of Osteopathy who has worked with kids with developmental delay, syndromes and low tone, but we did find one. Isabella has an initial appointment set for March.

• We have an IFSP coming up soon. I cannot believe that it has been a year since she started receiving early start services.

• We have follow up appointments with the renal doctors, the GI clinic, and the Craniofacial team in March.

• We were having issues with baby care…. but, after all the looking around, and asking around, and researching, we found out that she qualifies for nurse care. So, a nurse will be caring for our little Isabella really soon. What a big blessing!

 To read about Isabella's previous developmental update, click here

a NEW year

This past year was a whirlwind of sorts for our family. We went through moments of grief, of sadness, of fear, of doubt, of weakness, and a long period where our faith has been tested. Nonetheless, through the help of God and our relentless holding on to our faith, we were able to rise above the challenges that the past year has brought.

It was around this time last year when my Isabella was freshly diagnosed... a dark time in my life that I never thought I would have recovered from. It is with shame that I admit that i felt defeated, hopeless... lifeless. But... as the saying goes, "Time heals all wounds".... and I would have to say that this saying has a ring of truth to it. However, I found myself identifying with a less popular saying than the one aforementioned, and that is this... "Scar tissue is stronger than regular tissue". And here I am, a year after, not yet fully recovered, but I am proud to say that I am on a positive path of recovering. I feel much more stronger, and I am looking forward to this coming year because it just feels really promising, and that in itself is a gift.

We've learned valuable lessons this year... we've learned how to find cheer in the midst of the noise and chaos, we've learned how to find joy in the littlest of gifts, and we've learned to let go of trying to have control over things. Most improtantly we learned about a deeper level of trust that I believe is called true "faith".

We have been blessed by having the support of a lot of people that prayed for us, and encouraged us, and despite the rocky moments of 2010, my family and I have found that this year has been a very fruitful year, for it made us better people.... it made us who we are today.

Happy New Year everyone!