About A Brother and a Sister

Ever since Isabella was born, we have been raising our typical son (older sibling) conscientiously in terms of how he should treat her sister. We want him to treat her with compassion and yet not so much that Isabella can  get away with a lot of things. We want to be fair to each of them and yet not overcompensate for whatever for either one. It's a tough tightrope balancing act sometimes and you have no idea whether you are doing it right or whether you are doing it enough. It's a mystery.

Sometimes I wonder about whether my two children will ever find a way to really play together, like siblings do... sometimes I fear that he will outgrow his sister and be estranged as they get older, but like all fears and what if's, there are no guarantees, and most of the time really, they are all just noisy mind junk .

These were quick and passing thoughts I had this week, and then while I was in the process of cleaning up photos and videos from our I-Pad, I found this.

As it has been proven over and over again, it looks like I really have nothing to worry about. 

Isabella: Summer 2012 Update

Here is a long overdue update on how my little Isabella has been doing….

The Stats:

In May 2012 Isabella weighed in at 21 lbs and 29 inches. No wonder our backs were already hurting, she got so heavy, she slips down from my arms from all that weight. 

However, sometime in June 2012, a weight check in one of her appointments revealed that her weight went down to 19 lbs, BUT, what she lost in weight she gained in length (30 inches).

That’s why she can see what was on the other side of the booth

Renal and GI:

We went to see her Renal doctor in June and the labwork reveals that her kindeys are NORMAL. But, before our appointments are cut down to being once a year (instead of every 6 months) they decided to change her diet to a non restrictive one (which meant she can now eat anything and I do not need to read labels) and do final lab tests to see how her kidneys handle it. In coordination with the GI clinic they also decided to wean her off the formula and give her only all Boost Kid Essentials (1.0) for her overnight feeds.

Blood drawn shows good creatinine levels, which indicates that she has rock star kidneys. But renal says that they need a urine lab check to get a more complete picture of how her kidneys are doing. So as much as we tried getting this done before she goes to surgery, our attempts at collecting urine failed 3 times (I never thought that it is super challenging to collect urine from a girl baby). So, while she was at the hospital (post surgery)we let the nurses do it. We have yet to see the results, but I have a strong feeling that her kidneys will be fine… this would then translate to seeing the renal doctor just once a year so I’m keeping my fingers and legs crossed.

Feeding:

I got crazy using the puree-er and used it to puree table food (pasta, stew, meatloaf and potatoes, etc.) Basically anything we ate, she now ate too. Turns out, Isabella loves avocados and bananas (which she used to not eat because of the high potassium content). Daytime feeds became really fun (more fun for me with my new found kitchen tool) and she was taking in and keeping down food really well. The success in feeds brought her weight back up to 21 lbs in July 2012. Throw ups were non existent, and daytime feeds are all via mouth. We still do the continuous feedings at night, but now she takes it a rate of 50 mls/hour. This will make her feeding OT and GI doctor really happy.

With the diet change, she has been eating more, and gaining weight! But, we needed to deal with the occasional constipation that we have managed according to certain constipation alert levels.  Click here for that blog post.

Isay with her"chunky" legs

Neuro:

Isabella had 2 seizures in the past that we think might be induced by chlorine exposure. So in May 2012 we decided to do an experiment and we went swimming. As it turns out, she did well in the pool and we’ve taken her swimming again since then …. so that chlorine induced seizure myth is busted.

Us swimming with the baby... I mean, toddler.

We do note seeing drop seizures. Neuro asked if they were “new” but we said we never really saw her "drop" before as she was not really up and mobile before. Now that she crawls, kneel walks, climbs and cruises around at home, we’ve seen it more often. So he recommended another seizure medication, Clobazam, and also decided to increase the Kepra, and wean her off the Phenobarbital. During the first week of giving her the new medication she was lethargic, and after that she went back to her usual self.  No more drop seizures noted since then, so the new seizure med cocktail is actually working.  

Isay and Nanay walking at the beach

Sleep Study , EENT, Audiology, and Surgery:

A sleep study was done in April and it revealed that Isabella has obstructive sleep apnea. So an order for surgery was done to remove her adenoids and tonsils, which we are hoping would be her last surgery. Also, since, she will go under anesthesia, we requested that another sedated ABR be done to finally get a conclusive answer regarding her hearing issues. After moving surgery dates several times, we finally got it done on July 27^th. Giving us a week to squeeze in a short family getaway in Tahoe before we face the work that recovery from surgery entails (and also enough time to care for her post op before the new school year begins and we need to be back at work).

ABR revealed that she has NORMAL hearing. When we asked questions about seeing an audiologist for our follow up appointments, the doctor said we don’t need to do it every 3 months. So we wondered about all the cyclic-audiologist-appointments that we diligently kept (and missed work for) in the past 2 years, when her very first ABR (done when she was 4 months old) revealed the same normal result. Doctor said that with her disability, the behavioral audiology tests were not developmentally appropriate for her, and even if she cannot prove through those tests that she can hear, testing needed to be done. It almost sounded like it was a waste of our time since she can hear perfectly well during all those times that she was failing the tests that were not developmentally appropriate for her to begin with, but, nonetheless, hearing the word "normal" in anything about Isabella, is music to our ears. Doctor says that from now on, we would now only need to see an audiologist every 6 months, not necessarily to check for hearing, but to check for obstruction, i.e. fluid in ears or cerumen so that an EENT referral could be made to check ear tubes or clean her ears. We decided to go to a different audiologist for this. 

Well we know she can hear us….  maybe not so much when she was younger because she does not wake up or get startled by loud sounds (and believe me, we tried banging pots and pans while she was asleep and she stayed soundly asleep), but now we know she does because we can hardly sneak in the room without her hearing our tiny catlike footsteps, and we can no longer take her to the movie theater even if we time it perfectly with her naptime schedule because the surround sound wakes her up. The question though was not so much if she can hear, but how much she can hear, so with this normal ABR result, her hearing issues have been resolved. She can hear everything perfectly fine!

As for recovering from surgery, well except for pouty lips (like that of Angelina Jolie’s), and the excessive drooling (like that of Angelina Jolie's onlookers) from not wanting to swallow,  she recovered well. The most important part was that there were no seizures post op. Yay!

While recovering, we noticed an increase in oral aversion, and oral feeding was a futile attempt. The only thing we can seem to give her orally was vanilla ice cream, which she occasionally manages to swallow, and which is the only thing that has a high swallow success rate. So mommy’s pureeing frenzy would have to be put on hold and we would need to be satisfied with bolus feedings during the daytime (it is in times like these that we are thankful she has a G-tube… that and during periods of long drives). Also we noticed that her cry is louder, most likely with the increase in square footage inside her mouth that amplifies the sound…. and most most most likely because it was time for her next dose of pain medication (duh?!?)

Sleep Study and After Tonsilectomy and Adenoidectomy Surgery

Cardio:

Prior to surgery, a referral to cardio was made. We were anxious to know if the PFO and PDA holes in her heart have been resolved. The other doctors hear a murmur when they listen to her heart and so we were anxious to hear what the cardio has to say.

After an echo and a sonogram of heart was done, it revealed that her heart was normal and NO HOLES WERE NOTED. The murmur is still there, but what she has is called a Still’s murmur (because it is "still" there, hahaha!), which actually a benign type of murmur that we should not be really concerned about. Two thumbs up for Isabella’s heart! 

Speech and Communication:

I noted in a previous blog update that Isabella shakes her head to tell us “no”…. she has not done this for a while.  We also noticed that the head shaking that she does is more of a stimming activity and not really a “no”. Well that “head-shaking-stimming”, if it indeed was that, has stopped too. So, I don't really know what to say about that. It's confusing.

As much as I want to have something really significant to report in the area of speech/communication, I have yet to wait for signals from her. She does not reach or point or gesture for anything, just yet. But I do know, that there is this desire in her to tell us something, it’s just a matter of finding and teaching her a way to know how. Her sounds are mostly “Mmmmms”, and an occasional “Ahhhhh” to communicate displeasure or delight. She cries, but not so much… she is a pretty quiet laid back baby (toddler?). Although, just recently, she does this “fake cry”, perhaps in protest for when our world does not revolve around her. (See related blog post here)

I have noticed frustration though, so we started using sign language and have told the nurses taking care of her and the rest of the family swear (via a blood compact) to use consistently. One time when she seemed restless and was making sounds that seem to communicate that she is somewhat not happy and needs to be entertained, we signed a wiggling W to ask her if she wanted to watch the Wiggles (which is her favorite show), and the sound she was making stopped, which indicated that she understood. Other than that, I have yet to see a real communication “output” from her.

Although…. there were these two instances that she seemed to communicate something.  Click here for that blog post.

Motor Development:

After drop seizures have been more controlled, we noticed an increase in her getting around the house. We would find her by our feet, in the kitchen, while we are washing dishes in the sink. We would find her halfway up the stairs, perhaps going after her brother, who just went upstairs. And one time we thought we lost her only to find her in the big bin by the TV getting into her basket of toys. Looks like it IS time to set up the gate and baby proof the house.

The therapist got her this really cute Pepto-Bismol-pink seizure helmet with a rainbow stripe strap that looks really cute on her. She looks like a little pink helmeted wrestler or boxer in training. She still needs to get used to wearing it though.  The therapist is also trying to have her work on using a walker. Check out this video.

With some help, she has also managed on several occasions to take 2 to 3 wobbly steps on her own as seen on this other video.

Other Things to Celebrate:

* Because she thinks she already is a big girl, Isabella has cut down her daytime naps. Every now and then she manages two 30-minute to 1-hour naps, but mostly she only does one in the afternoon. Every now and then she also tries to convince herself that she is not sleeping even if she actually is.

Isay's not really sleeping, she's merely sitting.

* Isabella is set to start preschool in January 2013. So when we had our IFSP in July, it was almost hard to believe that the specialists have worked with our daughter for almost 3 years, and I  thank them immensely for everything that they did to help our daughter. She has come really far. Our next step is to see the classes sometime in early September so we will be ready for our transition meeting (IFSP to IEP).

* PSA found another nurse, so now we have consistent full work week care for Isabella. YAY! 

So that’s it for the Summer of 2012…. As for me, with the cyclical anxiety that I have to go through

-Ughhh, another appointment and another appointment and yet another appointment. 

- Is she getting enough oxygen while sleeping?

- Will she have seizures after swimming?

- Does she still have holes in her heart?

- Why did she lose weight?

- Will she have seizures post op?

- What degree of hearing loss does she have?

I realized that it ALL turns out fine and all the anxiousness was a waste of time (I have to keep remembering that).

- There will still be appointments but there are less to keep up with.

- No seizures post swimming nor post op.

- What she lost in weight she gained in height.

- There are no more holes in her heart and the murmur is benign.

- She is not getting enough oxygen but after surgery she will, etc.

- She most DEFINITELY can hear.

With my expectations kept at a realistic level and with her always happy, there is really NOTHING to worry about!

LIFE IS GOOD.


For the previous developmental update, click here.

Ah-uh Yes and Ah-uh No

Isabella has not showed us any communicative output really. She makes sounds, but they are usually Mmms, and Ahhhs, and the Ah-uhs that, depending on the context, can mean anything random. However, with the occasional change in tone in how she says it, it seems that sometimes she means Ah-uh as a "Yes", and other times Ah-uh means "No".

Here are 2 instances…

Instance #1: After rolling in her crib and crying for about 20 minutes, I realized that she will not go down for her nap, so I went to go get her and asked her “Why didn’t you sleep?” and she said “Ah-uh”, in such a diva-nated tone that tells us “Ah-uh, I don’t want to.”

Instrance #2: We were in the car and it started to smell like something died. So I asked my husband if he farted and he defensively said No. I asked my son if he farted and I got another defensive No. Since I was asking and was 100% sure that it wasn’t me, I asked Isabella if she farted, and she answers, “Ah-uh”… like “Ah-uh, I sure did”.

Apparently, It’s All About Her

Isabella has developed this newfound assertiveness, which is actually a euphemism for stubbornness (hahaha!). She is curious (another euphemism for nosy), and loves getting into everything that we are into. She loves interacting with her brother (more of bothering him actually) and she will block and grab whatever he is getting into, which makes my son upset.

Isabella wants everyone’s attention, and she has her menacing ways to remind us often that the world revolves around her. (Yes, this also includes the dog as she would lean on Missy like it was her personal warmed up couch when the dog finds a cozy corner to lay in).

She wants to be on your lap while watching TV, she crawls on top of you when you manage to find 5 minutes of quiet rest on the floor mat, and she will smack your face with her hand (doesn’t hurt, but she will keep on bothering you) when she finds you with your eyes closed when you barely laid down, like she's trying to say "How dare you get 5 minutes of shut eye!", That or she tosses her shoe on your face (which hurts sometimes).

This is Isabella's way of telling her brother that it is HER turn to use the laptop. 

(WARNING: Don’t be fooled by that smile on her face)

Here are other examples…

Example 1: She cries for attention.
Oh she cries when she wants us to just pay attention to her, it is this fake loud cry with no tears (that I suspect will be more amplified since her last surgery). She cries when she sees us getting dressed up, thinking that we are leaving her. She cries when we leave the room to go to the kitchen to make her food, she cries, and her plea for attention is most definitely heard.

Example 2: She loves herself.

She likes looking at herself in the mirror or looking at pictures of herself on the computer. She also likes watching a slide show of her pictures, and the moment the slide show stops, she cries to tell us that she wants more.

Example 3: She messes up my chore schedule.

Isabella wants me to just focus on her when I need to do something else. Whenever I fold the laundry, what normally will take me only 15 minutes to complete, takes me a whole hour. I would have to resort to playing endless rounds of peek-a-boo, and make it feel like something exciting each time, needing to do it for each piece of clothing I need to fold, because otherwise she will sit on top of whatever it is I'm trying to fold, or she will mess up the stack of neatly folded clothes, or get into the laundry basket and take all the clothes out and sprawl them all across the floor, getting dog hair all over it.

Example 4: She will judge you.
When I take a shower, she will crawl her way to the bathroom and sit in front of the glass shower door and just sit there watching you…. judging you.. making sounds, that make you feel uncomfortable having a baby look at you naked and making comments that you do not understand that you step out all soapy and semi rinsed. I swear, the moment I wrap my naked body with the towel, the “comments” stop.

Example 5: Your time is HER time.
When I lock myself in the commode, she will crawl and bang on the door with her shoe trying to tell you to hurry up with whatever sit down business your attending to. Almost like she's telling me that anything else that I do is less important than the privilege of paying attention to her. If I open the door so I can pretend to watch her, she will climb up and would want to sit on my lap, while I’m doing my “deposit”…. which leaves me doing my business in installments. 

Example 6: She is better than her brother. 
We will sit and chit-chat with her brother or have a silly wrestling tickle match on the floor and she will be there, putting her tiny body in the middle of it. She will yell, watch you with a stink eye, make those judgmental sound comments, fake cry, or toss her shoe. She will do anything in her power to put a stop to all the brother related fuss so we can all just focus on her.

Example 7: She torments her brother. 
She will take apart the Lego sculpture he spent all morning building, she will sit on top of whatever he is reading, topple over the bin of little toys he is playing with that we would have to tell HIM to clean up, and she likes pulling his hair, and HE will cry. Not a fake cry, rather a full-of-tears-he-is-hurt-cry or a my-sister-is-so-annoying-and-he-is-so-frustrated kind of cry. While Isabella, god bless her menacing heart, would give him a smile when he looks at her with tears in his eyes, or when we look at her and ask her what she’s up to.

We have put Isabella on time out for not having “gentle hands” (pulling brother’s hair), and after three days of time outs, she seems to get the picture that she cannot pull her brother’s hair if she wants his attention, which she seems to want a lot of.

Not to say, of course that she does not cry when brother does something, she cries when her brother changes the channel (while she’s watching the Wiggles, so he can watch his 7 year old boy TV shows), and he proceeds to watch while she proceeds to cry and crawl to grab away the remote from him, which she is usually not successful in doing, because it is HIS turn on the TV.

While we are enjoying this exchange in torment between brother and sister, (which is a typical sibling thing in any household), and her tormenting us, (which is typical in any home with a toddler), we also enjoy that she has turned into this little diva, making everything all about her. =D

Okay Baby Girl the rest of this year you can make it all about you, 

then come 2013 we’re gonna have to work on tapering it off a little.

Poop Happens

Isabella poops two to three times daily. With two being the minimum quota and three being having extra marginal profit, and the occasional four being a reason to celebrate the extra commission.

The ideal poop consistency is that of peanut butter (if you are eating, and you decide to stop reading this, I won’t be offended, promise.)

With the diet change,  ordered by GI and Renal to a non-restrictive diet, we were faced with dealing with the occasional constipation that we have managed according to its constipation alert levels that is signified by certain poop consistencies.

Level 1 Alert: 
Level 1 Constipation Alert means different things. When Isabella has not gone in the morning like she usually does, or when she does go but they are like small pellets and are dry (like that of a rabbit or a goat), or if she gives us a donut hole (like a piece of a chocolate donut hole from Winchell's), or if she produces what we call Play Doh- a pasty kinda flat piece of brown doughy poop, this is called a Level 1 Constipation Alert. This level of constipation is usually managed by giving her some prune juice. While usually a successful means to make her go by lunchtime, every now and then, we do need to proceed with a plan to remediate a …

Level 2 Alert: 
After being prune juice-boarded, and still not going by 4 pm, a Level 2 Constipation Alert will be in place. At this level, we will have to give her a dose of this minty-flavored-chalky-substance called Milk of Magnesia. At this point, because level 1 remedies did not work, and she has already skipped about 2 bowel outputs, we will need to deal with diaper overflows, poop went throughs, and sometimes, just sometimes, the all the way to the back poop cleaning.

It is important to note though that this level of intervention usually works and would not necessitate the need of a Level 3, but sometimes, rarely really, we do need to up the ante to a…

Level 3 Alert: 
It is already day 2 with the constipation battle. For the first half of day 2 we will try a Level 1 approach, and  and if she still has not gone, a Level 2 approach will be administered in the afternoon, and if that does not work, by bedtime (after already doing her daily bedtime ritual of a bath, brushing her teeth, taking her meds, and being dressed in her pretty jammies, and no luck with the production of her precious poop) then suppository Baby Pedia Lax will be necessary. Pedia Lax is really our last resort, and we are usually hesitant to give her this, so we would try and give her some belly massage and wait it out. But since she gets really restless and cranky when she has not gone (and I can’t blame her, for I will feel the same if  I’m all plugged up.) then Pedia lax seems to be the only way to go.

Usually, due to our hesitation to give it at the right moment (which is always the time frame before we did it plus the time we wasted on waiting after we give her the belly massage), she would go in her sleep and we will have to deal with all the all the plugged-sordid-mess-of-bowels in the middle of the night.  So lesson learned, when faced with a high level of constipation alert, DO NOT hesitate to give Pedia-lax by the afternoon of Day 2 Level 3 Constipation alert if we do not want to deal with giving the baby another bath in the middle of the night, and the need to address the dirty bedding laundry, ASAP. 

Peek-a- BRO!

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.

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!

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

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.

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.

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!

Eloi: "Don't worry Nanay, I will take care of Isay when I get older."

Sometimes being a brother is even better than being a superhero. ~Marc Brown



What Is Special?

I feel that as my son grows up, he will have his own journey in coping with having a sister with special needs. What I am not certain of is if he will go through the stages of grief like any parent coping with the reality of raising a special child. Will he go through Denial? Anger? Bargaining? Depression? Then, eventually Acceptance? Is he currently going through one of these stages? Or, with the pure nature of his child-soul and child-love, he will jump straight to acceptance? While it may be pointless to think of these things right now, they do cross my mind, but my biggest hope is that he copes with the reality of it much better than I did (I am?).


As I have written before in a previous post/s, we have exposed Eloi to children with special needs ever since he was small, and we have had conversations with him telling him about children being “special” and his sister being “special” I know that in that little mind of his, he is still trying to understand why his sister is “different” and what the word special really means.


A big part of me wants him to not see that his sister is “different”. My wish is to be able to raise my children without the conscious thought that “this is my special child” and “this is my normal child”… they are my children, period. I don’t want him to try and compare her with other children nor do I want to run a household parenting each of my children differently, with the other one getting “special treatment” because of her “special needs”. My wish for Eloi is to look at Isabella as his sister and not be defined as his “special sister”, with the reference of the word special being “different”, “irregular”, “abnormal”, “non standard”, “uncharacteristic”, “strange”, “deviant”, “weird”… if ever that it is unavoidable for her to be defined “special”, I’d want the context of the word “special” be that of being “unique”… just like each and everyone of us.


But what is special? And how do you really talk about it with a 6 year old, in a way that does not degrade nor show division? How do you talk about it with a child without crossing that line? How do I go about discussing what is special and ave him understand the way I wish for him to understand?


Then, one morning on our way to school, we had this conversation.


Eloi: Nanay I have a classmate and it is his birthday tomorrow. It is also his brother’s, who is in a different 1st grade class at our school, birthday. Nanay, how come his brother and him are the same age and they have the same birthday?


Nanay: Because they are twins.


Eloi: But how come they don’t look the same?


Nanay: Not all twins are identical or looking the same. Anytime a mommy has 2 babies in her belly, those babies are twins. Sometimes there’s even a boy and a girl twin.


Eloi: But how come the one in my class does not talk too much, and the other one talks a lot and he does not really listen to us well when we talk to him. He just likes to talk over and over about cellphones.


Nanay: Because that is what he wants to talk about.


Eloi: But he talks about it all the time. It's the same thing all the time. It's always about cellphones.


Nanay: (I can sense some annoyance in his tone)Why don't you try talking to him about something else?


Eloi: I do, but he only wants to talk about cellphones.


Nanay: Maybe it's just because he likes cellphones so much and people like to talk about the things they like. Much like the time you liked talking about wrestling, or Starwars, or Legos. He likes cellphones so he likes to talk about cellphones.


Eloi: He is weird.


Nanay: ( in my head > OMG, the words he learns from his peers!) No. Don't say that. He's not weird. He is special (The boy has Apsergers), and that is okay. You know, much like your sister is special. Do you think she's weird too?



Eloi: No! But Isay does not talk a lot.


Nanay: They are both special but in a different way.


Eloi: Oh, so you mean something is wrong with him?


Nanay: Why do you say that? Nothing is wrong with him. Cause when you say that, it's almost like saying that when we say your sister is special, something is wrong with her. Do you think something is wrong with your sister?


Eloi: No! (very defensively) She’s okay.


Nanay: Yes. She is doing ok. She is just going to take longer than other children her age to learn things because God made her that way. Like your classmate’s brother talks a lot because God made him that way. Do you think anything is wrong with that?


Eloi: Noooo! Nothing is wrong with that. God made them that way.




Quiet Pause…




Eloi: Am I special Nanay?


Nanay: Why do you ask that?


Eloi: Because I talk a lot.


Nanay: Yes you are special. You talk a lot because you have a lot of ideas in your head and that is okay because God made you that way. All of us are special.


Eloi: So, I’m special cause I talk a lot, and Isay is special because she is small and cries a lot, and you’re special ‘cause you work a lot, and Tatay is special cause he eats a lot.


Nanay: (Chuckle) Yes.


Eloi: We are all special, ‘cause God made us this way.


Nanay: Yes, ALL of us are special.

The Crosses We Bear

A couple of years ago, I have this “convenient” relationship with god. I go to church when I feel like it and I pray when I find the time.

I do thank him for the luck and the blessings and the good tidings, but I really did not see him as the one who orchestrates the events in life. He is not the author of my life. I was the author of my own fate.… I used to believe that everything that I have reaped is because of what I have sown myself. God was merely a go to entity for times of crisis… major crises, when all hope is lost. He was an icon of hope… a symbol no different from Santa Claus, the Statue of Liberty, or a four leaf clover.


For many years, things came easy and we’ve been blessed by many things, but my spouse and I both felt that something was seemingly lacking… we both know that we need to nurture the spiritual aspect of our life, but we still kept choosing to be busy with other things. We kept putting off the nurturing of our spirit under a pile of things to do… and despite the knowledge of this need, we didn’t really think it was pressing enough to pay attention to right away. Our “spirit” was no different than another thing on our to do list that we needed to get done. “God”, was on our to do list, more specifically at the end of our to do list. We are guilty of putting god as our last priority that we will get to when we find the time…. Until a year ago, we eventually did.


A year ago my husband and I decided to participate in the Christian Life Program (CLP). We figured, ok its time. We told ourselves that since we do not have a major crisis in our life, “God”, however we may interpret him to be, will not be “judging” us because we only remembered him because we are in dire need. We figured that since we’ve been blessed we owed him at least that.


So we went to attend the CLP… “Friday” church as we called it. I was skeptic. I had all this mind noise and all these questions that challenge what was being said… I was preoccupied with what the speakers said that I found to be debatable. I would listen to the talks and take it in objectively, much like doing research or working on a course of study. Then, during one of the CLP sessions, while I was busy trying to block away all the mind noise, and asking myself “what am I doing here?” I found myself transfixed, on the picture of Jesus knocking on the door…. It was then that I realized that I was taking all the teaching the wrong way. I was looking at faith from the wrong perspective. Faith is not a matter of the “head”, it was a matter of the “heart”.


It was then that I felt a turning point whilst undergoing the CLP program. I have opened myself to the teachings. My son further motivated us to commit to finishing the program as he gets really excited about going to “Friday church”. We were able to attend the 3 modules, the 12 talks on Friday evenings after a hectic work week and me ALSO being PREGNANT at that time. But I didn’t mind… even though I was feeling extra tired from being pregnant, it became important to me…. For the first time, God was at the forefront of our daily life. Honestly, we found ourselves wondering why we didn’t let him in sooner. It was wonderful and we felt the immensity his love. There was nothing else that we needed. Everything was just going to be perfect from then onwards…. And so I thought….


Not long after we have completed the CLP… on November 13, a Friday, at my 36th week of pregnancy I received a phone call from my doctor. He said that the ultrasound we had a couple of days back revealed some concerns about our baby. He said that she has a hole in her heart. Eventhough we were worried, we know god is there…. and we prayed.


When we went for a more specialized ultrasound to have our baby’s heart checked, we were told by the perinatologist that there were concerns about my baby’s size, but most shockingly concerns also on the baby’s brain. They detected cysts. Again, eventhough we were more worried, we know god is there and we prayed.


We were then referred to Lucille Packard hospital in Stanford and met with a lot of specialists. And at an ultrasound we had there, they detected that my baby has multiple brain anomalies…. She has underdeveloped brain structures, brain cysts and some fluid. This was confirmed by fetal MRI scan, that then also added detection of a liver cyst, and concerns about the baby’s size. And eventhough a bigger worry was added on our list of worries, we still believe that god is there, and we prayed.


The doctors then told that a c section should be performed because of all these concerns. So on December 9, feeling not quite sure about how to feel about the anticipation of the birth of our baby, she was born. She weighed 4 lbs 3 oz. She had trouble breathing and was intubated, but not long after she managed to breathe on her own. She was also found to have a cleft palate. Again, we countered our worries in the belief that god is there and we continued to pray.


She stayed 17 days in the NICU and during her stay she was jaundiced and her weight went down to 3lbs 5 oz. Doctors kept poking her for many lab orders that were requested. She had an IV on her head. She had wires attached to her tiny body that were attached to these machines making all these beeping noises. It was a lot to take in… too much for a small baby…. Too much for a mother like me. They inspected every single thing that they could inspect. And eventually they detected that she has underdeveloped kidneys as well. Yet another thing that we needed to add to our already long list of complications… but we still prayed... in fact, we prayed harder.


We then were told that we can bring her home the day after Christmas. On the day that we were picking her up from the hospital a yellow card on her bedside read that she failed her hearing test. We brought home a deaf baby. By this time, worry was more than just a constant companion, by this time it developed into anxiety that seem to live and breathe a life of its own … but we held on to hope and trusted in the lord and we prayed like we never prayed before.


December 28, my birthday. I received a call from genetics doctors. They finally have a diagnosis that ties all these complications together. My daughter has wolf hirschorn syndrome. I cried… I was disheartened. When I googled the syndrome I was devastated. The prognosis is very grim…. Profound mental retardation… global developmental delay, seizures, Might not talk or walk….. I stopped praying.


I had many plans for her. I weaved many dreams of what she would grow up to be. In the many different beautiful scenarios that I have pictured in my head, none of that included feeding a child with a g tube, managing medication, pushing a child on a wheelchair, going to doctor’s clinics instead of hula classes, and working on speech skills and making sounds instead of having to sing songs with her. How will I be able to do things that I had planned for us when we do not even know when or if she is going to walk or talk. I was not equipped to do this. Despite my being a special education teacher, I was not ready to do this. I am not even willing to do it. I just can’t.


I did not understand why of all times in my life it had to be now. Why did it have to be me? Why my family? Why my daughter? Why when we finally brought ourselves to the Lord. I didn’t quite understand…. Why am I the lucky victim of this sick stroke of genius bad luck? Why didn’t he listen? I never ask for a lot of things, why was I not spared? God was unfair and I was angry and I was cursing at him. I hated him…. I really hated him. He was not there… was never there… God abandoned us.


In my grief… in those dark days and dark dark hours when I was asking god why? Why me? Why now? Why when I choose to come to you lord? A voice came to me and said, “I made you come to me cause I know you would need me”…. Upon hearing this voice, I experienced this lightness…. It was the answer that I was looking for. That was the day that I found myself praying again.


I said, Lord you gave me this, you have got to help me through this. You do not have a choice but to help me like I did not have a choice when you chose me for this task. You have got to help me. You just have to.


It took many tears, many sleep less nights, many crazy fits, extreme bitterness, intense self pity, many mind looping worries, fears, anger and anxieties before I eventually found myself in a place wherein I have surrendered all of this to the lord. It was not easy getting over the fear and the envy and the disappointment and the anger. It was not easy. It was very humbling but it was not easy, but I did it. I’m actually still doing it. I gave it all to HIM…. I offered Isabella’s fate/future into his hands. I realized that my children are not my children, they are the children of god. I am merely a steward. I was… we were… entrusted to care for Isabella. He trusted us, because he has that much confidence in us to give us this immense task, he believes that we can do this… and though I was very doubtful about the strength I had in me, I eventually found myself in a place of acceptance. Though there are days that I still shed a tear, when I still feel fear, frustration and doubt… I can easily muster the strength and courage to tell myself, that I can do this, with god’s help and god’s grace I can do this.

" My grace is sufficient for you, for my strength is made perfect in weakness"

Of all the crosses that I have had to bear in my life, this by far is the biggest… and yet, this is the lightest. I let god take over and I trust that he will fulfill his promise of carrying me through. Through him all things really are possible, all we’ve got to do is believe.

Remembering Then to Really Appreciate Now

Dear Isabella,

I stumbled upon your pictures at the NICU and it brought tears in Nanay’s eyes. Anak, may our stay at the NICU serve as a memory and reminder for us to realize how far you’ve come.


I never thought I'd be saying this, but may I never forget our NICU days so that I will never take for granted each attempt you make to learn a new skill

Most importantly, may I always remember these days in the NICU, so that we can celebrate your triumphs for each skill that you worked so hard to master.


Anak, I pray that you never lose your persevering spirit. I will always be here to encourage and cheer you on.

With much love,
Nanay

The above pictures were all then.....

This is now.

I anticipate with joy all of your future progress. Take as much time as you need baby girl.

Projectile Puking

I'm guessing that puking is part of the parenting package. At least for this (referring to me) parent's package.

 I remember when my son was a baby, he would throw up a lot… and I do mean, A LOT!

He even knows when the most opportune throwing up time is (i swear he can induce a barf at will)… such as that one time that we were in a restaurant… he would have a coughing spell that sounds like he was choking even if he was not, then throw up immediately after. And he would do this just as two elderly ladies are ogling him. How lovely!

Another time he chose to throw up at a restaurant, and he did this right before we were about to leave… just when we thought we were going to be spared from embarrassment, he did it, right there, with an audience. The waiter came and had to mop our area suppressing his own urge to barf, meanwhile we were scrounging for all the bills and cash we have so we can at least leave the poor guy a decent tip.

Another “favorite”, was when we went to a buffet and in the middle of our all you can eat dinner, my son decided to entice us with what he had for dinner. In the middle of our meal, of course, we lost our appetite. We cleaned up his puke-mater as much as we can, with the very limited paper towels we had on our table, threw the soiled paper in the trash, and cover the left over mess with the table napkin. We left the restaurant just walking straight to the door not daring to look back. We did leave $30 for whoever was bound to discover the sordid “surprise” we left. How embarrassing!

It was at that time that my husband and I realized that date night would have to be put on hold… at least until Eloi can manage to keep his food down.

I never really understood why he had this affinity for not digesting his food all the way. It baffles me to this day.

And now, enter my little Isabella.

It was understandable that she would puke when she had her NG tube, it was also understandable that she would puke when the food came down too fast in her G tube. And since feeding issues come with her syndorme, her puking was something, shall I say, predicted… something expected. No stress, no judgment, just something accepted as a regular part our everyday life. And since we’ve had all that puking practice in the past, we’ve become, shall I say, (ehem, ehem) experts at this puke business. We made certain that she would always have extra clothes, that we have a roll of paper towel, that we would give her food in parts, and have extra shirts for me, my husband and Eloi packed together with her diapers. We were always armed and ready for the barf battle.

Bring it on!



This afternoon though…. In the comfort and confines of my home, whilst Isabella was sitting on my lap and we were having coo conversations…. I was caught unguarded, and the projectile puke came from out of the blue, shooting from out of her nose and went right into my open mouth!


The physics behind this projectile puking was just amazing! This sort of talent just blew me away… I mean literally… SHE BLEW AWAY ON ME!

(Hahahaha!)

So, What Do You Say?

When my son was younger random people would just approach us and comment about how beautiful he is, how his curls make him cuter, etc. He attracted a lot of people. And we weren’t really surprised, he was a very cute baby.

Now, it’s Isabella’s turn. Random people would just come up to us and comment about how her eyes are bright and beautiful, how her lips are perfect, how her cheeks are so round and chubby that you just want to bite it, how she is so cuddly and squeezable, how she is beautiful and stunning and is no doubt a baby “girl”.

Now this is really nothing unusual. You see a baby, you look.

BUT, something was a little different…. Isabella seems to attract more people than Eloi did. She seem to magnet a lot more “oohhs” and “ahhs”. Could it be that she is that beautiful? Or is it because of something else?

When people do see and talk to her and try to get a smile out of her, they tend to ask this one question “ How old is she?” Now, I always find myself pausing before I answer this question (much like how I somehow try to avoid being asked the question “How is the baby?” or “How are you?”)

In that brief pause, this thought runs through my mind, “Do I tell her how old she really is?”

If I tell her that Isabella’s 6 months old, it will ensue a lot of follow up questions, and those follow up questions also give me a feeling of dread.

          Is she a preemie? (No she’s not, she’s full term)

          Why is she sooo tiny? (because her size is syndrome related)

          Is anything wrong with her? (No! Maybe something is wrong
          with you to even ask me that when I DON’T  EVEN KNOW YOU!)

I know, I know… most people mean well and they do get curious. Although, I have to admit that I did find myself wondering if the reason behind Isabella attracting extra curiosity is because of her ‘”look”. I did get to wonder if people are just being polite when they say “she’s beautiful” or if they see it. I am not a big fan of people staring.

The mama bear in me feels very defensive and protective of her little cub.

What do I say? Do I shock them with the response ‘Oh, it’s because she has a syndrome.” And walk away leaving them dumbfounded and marinating in their confused thoughts. Should I tell them that she has this rare syndrome and then proceed with a full blown lecture about WHS? If I do explain, will it result in the much needed “education of the public” about children with special needs? Do I print out brochures and flyers and pack them with me in my diaper bag ready to hand-out when the questions come?

Now, my husband tells them how old she really is, and when they ask why she’s small, he tells them,
“Because she just is.”

How he answers them makes perfect sense doesn’t it? I should be able to make myself confidently blurt out the same response… BUT, after his response people stay and look and stare at the baby and then look at us, as if waiting for a follow up, as if waiting for an explanation on why she’s small… they seem to not be content with “because she just is”. We stand there playing the “staring chicken game”…. And when it gets to the point that it becomes awkward, too awkward, they usually just walk away.

That “waiting for further information”, bothers me. I know it shouldn’t, but it does. I hope that eventually it won’t.

And since it bothers me, I tell people that Isabella is younger than she actually is. The other day this scenario happened…

          Stranger: Oh, tiny baby! How old is she?

          Me: Pause…. She’s 3 months.

          Stranger: 3 months? She’s too small for 3 months. (then stared
          at me as if waiting for an answer)

          Me: Staring…. Just staring… and eventually the stranger just
          walked away.

I realized I can’t pass my daughter for a 3 month old, so I decided to go another month lower and see if that excuse will “fly”. So with the next stranger…

          Stranger: Oh, cute baby! How old is she?

          Me: Pause…. She’s 2 months.
          Stranger: Smiles, stroked the baby's head a little and then
          walked away.

No awkwardness, no staring, no need to be defensive. There is this relief that that response worked out, HOWEVER, there is also this guilty lying feeling that sits in the pit of my stomach. And this tells me that what I’m doing is not quite right. Why else will my conscience bother me, right?

But, how long I can keep this up? Should I continue on with this “lie” (a white lie)? Should I come up with a better and more honest response that will not ensue such awkwardness, that won’t ensue that feeling that I need to explain?

I know, I know, I don’t really owe anybody, especially strangers an explanation, but, What do I say?