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. 

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.