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.

Happy Halloween

Isabella, our cute little THING!

Always Camera Ready

Do other WHS kids also love looking at themselves in the mirror, looking at their own photos, or having their pictures taken?

OR

Do I happen to just have the smiliest girl in the world?

Music and My Isabella

They've mentioned in the WHS network that our kids love music... I believe for this to be true!

At 3 and a half, Isabella hardly stays put, but not when she has the best seat in the house!

Great STRIDES Within a Week!

On my last developmental update I mentioned that Isabella has been walking. Well she has, but it was not really her first choice of movement/mobility around the house. Most of the time at home she would rather crawl or kneel walk, probably because her balance still needs work. She seems to feel more confident when we are close to her to guide her or for her to hold onto whenever she needs to regain her balance. She will take us for hand held walks around the house.

But just like any skill, she needs to practice walking over and over until she learns how to coordinate her balance with her body movements so she can move around with ease. Lately, (and this is a happily welcomed challenge) it is quite a challenge to keep her contained in the shopping cart, she would really rather take walks around the store, and her first go to person is not me or her dad, it is her brother.

Taking her brother for a stroll at Costco

However, this week she decided that she can do it all on her own! (please note that the picture and this video is a week apart and that it has been 5 months since the day she decided to walk across the living room)

This girl definitely wants to go!

And they said that less than 50% will ever be able to walk.
well... TAKE THAT MEDICAL SCIENCE!!!

Sharing our Special Story

We jumped into this amazing opportunity to share our story on the web, and although having to write it was an emotional journey back in time, the present and future sure feels hopeful.

Read about us in the feature article entitled Special Needs, Special Love.

Isabella Eats

Isabella has oral aversion... and due to that feeding is difficult, and she won't really explore her mouth or let others do it that oral motor skills are compromised. She does not chew, she does not suck, and the aftermath of a dentist visit (with the prying open, exploration, brushing, etc.) is a gateway to a temporary shut down of oral feeding willingness.

Daily feedings are tasking and brushing her teeth is no-party. Up until...

We saw that Isabella was very interested in her brother's battery toothbrush... those ones with a spinning brush head, make a sound, and has a vibrating sensation when you hold and use it. The nightly bath time routine is that the kids brush their teeth and bathe at the same time, and every time she watches her brother closely as he uses his toothbrush, giggles at the tickling vibrating sound she hears, and got so curious that she would grab it and put it in her mouth, and since they can't share toothbrushes (who would even want to do that really?), we got her her own spinning brush, a pink one with flowers... and "Lo and behold!"... she would welcome it with her mouth open whenever we brush her teeth, making tooth brushing feel less of a chore! =D

So, my husband, had one of his brilliant ideas... why not feed her with a vibrating spoon? So he went online, then the heavens opened up, and found one!

 

A week later it arrived in the mail... several uses later, feedings started becoming easier and the choirs of angels started singing, because now Isabella, will actually grab the spoon and put it willingly in her mouth!

 

So here's to hoping that the choir keeps singing!

The Third Year

It has been a year since I last updated this blog and a lot of good changes have happened.

The stats: Isabella weighs 23.5 lbs and measures 32 inches. That's a gain of 2.5 lbs and 3 inches in a span of a year... while it may not sound enough of gain when compared to a typical child, it is a big reason to celebrate in the WHS community! 

she loves the camera!

Feeding: All daytime feeds are via mouth, and her overnight feeding pump is at a rate of 75mls per hour for 7 hours. Although GI wants us to wean her off the pump, we feel that it is not yet time. She still does not feel hungry and to feed her on a schedule in the morning is still tasking. She is still volume sensitive, but throw ups are very scarce. She can handle lumpy food, but we are still mostly on Gerber stage 3s or pureed table food consistency. For the most part, our hesitation on weaning her off the pump is because of making sure she maintains her daily caloric intake. With her being more active, and what looks like her taking a step into the stubborn toddler stage (which i know we will be in for a while), making up for the calories via overnight pump was our way to go. It is a long discussion at the GI clinic, but there's a lot of flip flop between the pros and cons that the best way was to keep the feeding plan the way that it is. 

Neuro: Her last seizure was a year and a half ago. The doctor ordered that she be weaned off pphenobarnital, and each time we taper off an ml per each month, we would see notable increase in drop seizures, but as her system normalizes, the drop seizures go away. She is now completely off of it and we do not see any drop or staring seizures. If for anything we see a notable improvement in her development. We still do 3 mls twice a day of the Keppra and do twice a day of the Clobazam. As for what can trigger her seizures, we know that fatigue is one of them. Crowds of people still overwhelm her that she will get tired easily, so when we do try to take her to big parties, we try not to stay for too long, or we take her to a corner or a place where there are less people from time to time so she can rest from the overstimulation. 

Motor: She kneel walks and crawls around the house. Now that we moved to a one level home, she can navigate throughout the whole house like it was her very own kingdom. We also got her a Little Tykes slide for the backyard and she loves going there. She can walk. The ease and balance is still not perfect,  but she IS walking. Every now and then we would see her just standing, and she can from time to time stop, make turns and continue on walking.

Language: Isabella is quite a character. She is a diva and she knows what she wants even when she can’t really say it in words.  When we call her and she does not want to come, she will not look but she will be smiling and giggling. When we tell her its time for her bath she quickly crawls the other way. When we tell her its time for her nap, she does a fake cry sound with a drama-queen-cry-face.  Lately, when we point at something to ask her to get it, she will get it. We see an improvement in her receptive language. In terms of her expressive repertoire, she will whine when she does not want something, make happy sounds when she enjoys something, and she will take your hand and lead you to where she wants to go. There was a time that she would touch her forehead, for what seems like her response to the sign “hi”, or a generic sign for mommy and daddy, but that went away. But, we know she understands ore than what she can express, so expressive language would just have to wait and it will be one of those sweet surprises from her in the future. 

School: She attends a special moderate to severe preschool setting. She gets OT and speech weekly through the school (on top of the PT and feeding OT she gets at home weekly via our insurance). A bus picks her up and drops her off at home. A communication notebook is used so we know how her day went and we write anything we want to tell the teacher. Since school started, she gets bored easily at home. She looks for something to do, or some form of stimulation for her that watching "The Wiggles", herself in the mirror, or a slide show of her pictures are no longer enough. She wants to be tickled and cuddled and sang to. She craves interaction, she loves looking at books, and picking up things and dropping them on the floor, she loves being around children, and she is quite fond of babies.

What’s good on the third year: There are less doctor’s appointments to keep up with, less medication to remember to administer and refill. We still are closely followed by the Neurology, GI and Renal Clinics with appointments every 3 to 6 months, while the Craniofacial, Audiology, and Opthalmology Clinics only need to see us once a year. Less stress and less issues. I am in a better place emotionally, although the last time I fell off the wagon was when I saw a group of highschool girls getting ready for the prom and it broke my heart that my girl won’t be able to go to one, but it was eventually dismissed, as we made prom prearrangements by having my son be my daughter’s date. So that settled the temporary loss of perspective. Otherwise, for the most part, things are definitely looking up.

I noticed in her recent photos, that Isay no longer looks like a baby... she is now nanay's little girl.