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.