Reaching 4 The Stars

Isay just turned 4.

I was just looking at her past photos and realized, not only how much time flew, but also how much things have changed.  In spite of that forever feeling when waiting in between developmental milestones, 4 years passing seem to take us by surprise. Her face has changed so much, her activity has changed a lot, but her persevering spirit lingered on.

Here’s a quick journey of the first 4 years in Isabella’s life…

Year 0 to 1: This was an emotional year for the whole family. The diagnosis brought us for quite an emotional roller coaster ride of sorts, but we pulled through. This year, we had to deal with feeding issues and a lot of throwing up. We had to deal with having a child with a cleft palate. We went from having an NG tube to a G-tube (@ 4 months).  The docs said she has brain fluid and brain cysts, she can’t hear, she has kidney problems, she has acid and kidney reflux, and a heart murmur. We had cleft palate surgery and 2 major seizure episodes. BUT in spite of all that, Isabella was able to learn how to hold her head up, and that one thing that came right on time, was her social smile.  Early intervention services (Infant Specialist, Educ OT, Feeding OT, and PT) started when she was 3 months old.

Year 1 to 2: This year she started to eat more, but we still give her a bolus from time to time during the day. Her throw ups were erratic and almost nonexistent. Her kidney reflux resolved itself and her kidney function went up to 95%. A sedated ABR was done together with ear tube placement surgery. Her hearing issues were resolved, and as it turns out she can hear us. She started to make noises. We We dealt with 2 more major seizure episodes this year. BUT, in spite of all that, she learned how to sit with support, to without support, and managed to learn how to crawl.

Year 2 to 3: We found out that she has sleep issues and so another surgery to remove her tonsils and adenoids were done, and her 2nd set of ear tubes were placed at the same time.  This year all her daytime feeds are by mouth, but she still requires an overnight feeding pump.  We battled with insurance and the regional center and eventually we got a nurse to take care of her during the daytime. Her heart issues were resolved. We had one seizure episode but need not take a trip to the ER nor call 911. BUT, in spite of all that, Isabella learned how to pull herself up, and started cruising. She also figured out how to climb up the stairs and scoot her bottom to come down safely.

Year 3 to 4: This year, Isabella has been making more noises. She grunts, makes sounds, and squeals. She started school this year and seems to be really enjoying it there. She has shown signs of receptive language skills. She was weaned off one of her seizure meds (phenobarbital) and is only currently on Kepra, multivitamins, and nothing else. She is seizure free for a year. We are currently tipping the scales at 24lbs! We are also anticipating surgery to replace her ear tubes (again) soon, as well as an MRI just to follow up on her brain fluid and cysts. When literature said 50% of WHS cases may never learn how to walk, she went against those odds and has been walking and walking and walking everywhere!  

With all that Isabella has achieved in the last 4 years, isn’t it only apropos to have a “Reaching 4 the Stars” themed birthday party?

We love you Isabella and we anticipate for you to grab more stars!  

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.

Isabella's First Year

I cannot believe that Isabella is a year old. Time flew when my son was an infant, especially since you measure a baby's first year of life in terms of weeks and months.... seeing how different each week is for the first three months since birth and how each month is soo different than the last for the succeeding ones. Though I cannot especially say the same thing with my Isay, time essentially did flew by even if developmentally she has been in the 0 to 3 month range for quite some time now... this time though it was measured by the many medical appointments we've been to, the many therapy sessions we’ve attended, and the many specialists that we have discussed things with... most importantly seeing how one day, no matter how eye straining-ly small it is, is different from the last.

I can say that it has been an individually unique experience raising each of my children, and Isabella has been one that has stretched the limits of what we have come to understand on this lifetime.


Isabella currently weighs about 12.5 lbs. She eats semi solids food and can tolerate about 30 mls of food per feeding and then we give her about 50mls of formula. Even with the cleft repair, she still is volume sensitive and throw ups happen about 1-2 times a day, and sporadically, we would be blessed with none. Her current development has not changed much since the 11^th month update. She was able to regain the skill of sitting with minimal support from an adult and/or the sitting with her supporting herself with her arms. She can tolerate supporting herself while in a sitting position much longer now. Her repertoire of sounds now includes shrieks on occasion, and, unfortunately, we still have not heard her do a “ba-ba-ba” or a “ma-ma-ma”. Lately, when she is put on her belly and she pushes herself up, she wiggles her feet and she pivots her body, though it may seem unintentional, eventually she will most likely make her body pivot to face where she wants to go. I'm hoping that by this same time next year, I can say that my daughter is already crawling.

As I wonder what the next year would bring my daughter, I find myself in a place of HOPE. I hope that life will be kind to her, and that she will continually grow beautifully, and that she will be truly happy, but most of all… that she will feel loved… because she is.

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