Friday, June 24, 2011

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

Friday, June 10, 2011

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

Tuesday, June 07, 2011

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.