Wait, There's MORE!

In terms of speech development, I have mentioned in a previous post that Isabella does sounds and recently she will nod her head for “Yes” and shake her head for “No” and I pretty much feel that the use of Yes and No has been consistent. She also seems to understand some "signs" we have done with her.  But, in terms of a communication output, all we have are sounds.

However, in terms of conveying meaning, we are still lost, but like all other things “Isabella”, we believe that eventually "conveying meaning" will find it’s way somehow.

BUT… here’s the best highlight in terms of output, she finally is using the sign for “more”. See our little angel use sign in the video below.

Thank you Isabella for giving us a reason to appreciate "more" things, every single day.

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. 

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!  

Is This A Sign?

Like I have mentioned in previous posts, we know Isabella understands more than what she can express. However, it becomes a guessing game because with very limited expressive language output, it is an extra challenge to gauge her receptive language skills.

Her language repertoire includes the following:

• She can nod for "yes", and can shake her head for "no" but she is inconsistent in using it, so we can't really tell for sure. She does like to say "no" a lot. 

• She does not point, but she will take your hand and lead you to where she wants to go or for you to do or get something she wants, e.g. takes your hand because the ipad picture slideshow of herself has stopped - she loves looking at pictures of herself.  

• She used to touch her forehead,  her generic sign for "parent", but she also uses the same gesture/sign for "Hi"depending on the context.  

• She makes happy, whiny, angry sounds. Most with a closed mouth, but occasionally we get an open "ahhh". She's happy when she sees herself in the mirror, when we do a lot of movement with our hands, when we swing her, when we sing, when we dance, when we press play on the ipad so she can watch pictures of herself, etc. She makes angry sounds when her dad gets dressed because she doesn't want him to leave, or when I'm washing the dishes and cannot give her my full attention, etc. 

• When I talk to her she responds with a sound which indicates that she knows how to do the "back and forth" in terms of communication   

                  Me: So what did you do in school today?

                  Isay: closed mouth "uh-uh"

                  Me: So you played with your friends?

                  Isay: closed mouth "uh-uh"

                  Me: Did you have fun?

                  Isay: closed mouth "uh-uh"

• She has shown us that she has some vocabulary. Like when we ask her to get her book, even if we were pointing at the ball just to test her, she will look at the ball, but turn for the book and get it. 

Since her expressive language is limited, we try to use  sign language.  Even to just model it for her, in the hope that eventually she will use her hands to talk to us. (I have to note that we are not signing because she is deaf or hard of hearing, we are modeling for her a way to use her hands for language so she can learn how to use it). When we do talk to her, we make sure that we say the word and do the sign, even if she does not do it with her hands. I have to admit though that we are not consistent in using it because it's always just easier to talk to her, and there was always the question about whether she makes a connection between the sign and the word, BUT that was a question unanswered until today.


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In this video, Isay had one foot with a shoe on and another one with a sock. First, I signed only "where" and "shoe". Then I signed "where" and "sock". There was a slight, what seems like a processing mistake, and then she corrected herself.

In this other video, I had Isabella's shoes beside her on the couch. I don't know if she even knew they were there, because she was busy trying to watch herself being video-ed. I asked by signing "where shoe" but I meant "give shoe". I was not correctly signing what I was asking for her to do. When I asked, you can see she did look down her foot and then she shook her head "no". I realized the miscommunication that happened there. She was trying to tell me "no shoe" when I asked "where shoe", and it is actually a correct response.

She is 3 years and 11 months on this post... that's how long we had to wait for a sign that she does know about things we have been trying to tell her, show her, teach her ... but it looks like the wait is not going to be that long anymore.