30 August 2010

A Career Switch

Just read this news about Mieko's mum leaving the broadcasting world and venturing into Special Education.

Mieko was an absolutely adorable girl with Trisomy 18 whose achievements really inspired me and drove me to do my best for Vera in the earlier days.

The news prompts me think about what I should do with the rest of my life. Should I continue in Advertising? Or should I too start from scratch again and delve into the world of Special Education? I've always loved to work with children...I taught briefly in a kindergarten and secondary school before. But is Vera the sign that I should be working in Special Needs? ...

26 August 2010

She's Seeing OK

Orthoptic Test

Vera visited the eye doctor today. It's been almost a year since her last appointment.

She had an Orthoptic Test - they show her placards and note the response of the eye.

There's good news: Her bad eye is showing signs of more movement than at the previous visit. Her good eye is tracking well.

I was also impressed with new equipment to test her eye pressure.

Previously, it was a fat pen-like stick with a rounded tip that had to touch her eyeball to get a reading. (Who likes a pen touching their eyeball, right.)

Now, it's a gun-like thingie with a minute tip that shoots out in a split second to get a reading. Amazing.

video

Result: Pressure is normal. She is longsighted, but not short-sighted. So no need for glasses. Yey! Vera will probably yank them off anyway.

Surgery can correct her cross-eyes, but we won't be pursuing that as the change will be purely cosmetic.

And her eyes are beautiful the way they are, just because they are able to express what she feels and because they smile.

23 August 2010

Hello Friend

video

Now that Vera's bout of secretions has sort of cleared, we're letting the munchkins have more together time.


They both seem more aware of each ot her's presence now.

Times like these are so wonderful...not busying with baby or medical care, just watching them do their thing.

Such moments make me think of how "it's all worth it." My days may be filled with Vera-&-Daen Things-To-Do, but that makes my life full. There is none of the emptiness I had experienced during my earlier career days.

22 August 2010

Will Vera Walk?

I don't know.

We don't think so far. For us, it's one step at a time. Literally.

Does it matter if she does or doesn't? Actually, not really.

What matters is if it makes her happy. And boy, does standing make her happy. Taking a few shaky steps forward, also makes her happy.

Because it does, I'm gonna do what it takes to help her along.

First, we have to get Vera to stand on her own. And our little friend has always loved to stand.



video

From us supporting her at the armpits, she can now do it with us holding just her hands. It is the one activity that brings her much joy in her waking hours.

She enjoys shifting her weight around and seems particularly proud of herself when she tries to be more upright.

Alas, some of the characteristics of Trisomy 18 children are Club Feet and Rocker Bottom Feet.

Rocker bottom feet

As you can see in the picture above, Vera has a bit of the latter. The bottom is curved like a rocking chair. It prevents the lift-and-push forward, which is needed for walking.

This malformation result in the uneven distribution of weight, and thus causes inner pronation when she stands. But because the little girl enjoys standing so much (and we love to let her stand) the inner bone of her feet has started to protrude (pix below) to bear her weight.

Protruding bone

Her feet are a really strange shape as well. Longer that usual for her age.


To prevent her feet from continuing to develop in an abnormal manner, we have to get an AFO (Ankle-Foot Orthosis) custom made for her. This is something she will wear that moulds to her feet and is intended to control position and motion of the ankle, compensate for weakness, or correct deformities.

We are currently waiting for something like this to be brought in to the Singapore Foot Care & Limb Design Centre from the US, so that it can be custom fitted for young children like Vera.


It is made of softer plastic by Cascade Dafo, unlike the standard AFOs which are made of a harder, stiffer material.


We hope to get it done soon, so we can give Vera all the support she needs to begin standing on her own two feet.


video

17 August 2010

Follow Me

Vera is better and has resumed her secret training, with Daen watching intently at times.

video

She continues to have to be suctioned. I try to do it as fast yet gently as possible, before she reaches her threshold to avoid her crying. Her nose is pretty clear now, but green gooey stuff is still stuck in her throat. It's still there because she clenches her teeth and refuses to let me suction from the mouth.

She poops everyday now easily and her button granulation is under control.

Life is slowly getting back to normal.

10 August 2010

Propped Up


Thanks Serene, for the tip on propping up.

This is giving her some relief from her reflux/apnea/congestion, but it is a temporary solution.

By morning, the girl has torn through the plastered barricades.


The doctors can't yet figure out why she's unable to sleep, but I can't wait any longer for answers. I need to find a solution for Vera myself.

This is what I found after trawling the web: The Comfy Lift Bed™.


It seems to be the answer to my prayers. Reading the testimonial of the parents, it seems like we are not alone in dealing with sleepless reflux/apnea kids and there is hope.

It's made specially for toddlers up to 5 years old (for Vera that will be till she's 8-9) when baby wedges are too small.

Again, it's available only in the US (made by a man who had reflux himself and started a company making reflux sleeping beds in Texas) and it's quite pricey.

But this could be the long term solution to Vera's sleeping woes.

Comfy Lift Pediatric Reflux Bed Manufacturer Spotlight - Meet the Maker

After suffering from Acid Reflux Disease and Barrett's Esophagus, Horacio Rubio started the Comfort Lift Pillow Company now called the Positional Therapy Pillow Company. His company makes just about any gastric reflux bed wedge or bed wedge for acid reflux you could ever want.

After years of phone calls from moms of infants with reflux asking for crib wedges, Horatio was moved to try to do something for a little girl named Julia and other toddlers that were suffering from debilitating conditions like pediatric reflux, low oxygenation and sleep apnea.

According to Horatio, "Her mommy Jennifer poured her heart out to me describing the difficult lung and reflux disease Julia had and how much she loved her precious child. I had to try so I told her I would call her back with what I could come up with. In just one hour I had what is now helping many children with reflux achieve an inclined sleeping position!"

The Comfy Lift Bed™ is a specially designed bed able to incline a child in need of elevation due to a number of breathing and digestive disorders. The most common use of the Comfy Lift Bed™ is for pediatric reflux. Other pulmonary disorders such as lung diseases, sleep apnea, and congestion are among the uses of the Comfy Lift Bed™. Utilizing the natural law of gravity to keep the stomach acid down and the airways clear is the most natural and practical way of dealing with these difficult medical conditions.

The bed has specific features that elevate the child for better breathing in a manner that makes the child feel safe and secure. The side barriers position the child in a side sleeping position without strapping or restricting the child, which is preferred by most pulmonary physicians and GI pediatricians. The opposing foot wedges keep the child inclined and prevents dangerous sliding down to the bottom of a standard wedge or an elevated crib mattress.

Infants weighing approximately 15 pounds on up can begin to use this child bed in a crib (preferably with a Crib Tent™), placed on the floor, or in a toddler bed frame. As the child grows older the Comfy Lift Bed™ is uniquely designed to grow with the child, by simply removing some of the additional foot wedges and permitting the legs of the child to stretch out further. The Comfy Lift Bed™ helps children up to 5- 6 years of age.

Horatio and his wife Mary Alice have run the company based out of Corpus Christy, Texas since 1998 and have all the products made in the US.

Advice Needed

Vera is having a bout of bad secretions for the last 2 days.
Very thick, suctioning needed every 3 hours.
Vomiting her feeds.
Able to sleep only 1 hour max at a stretch at night.
Very tired out.
No fever.

So far giving Fluimucil 1/4 pack, once a day.
Zyrtec 2.5ml 2x a day.

Only relief she gets is if I prop her up with an adult pillow. But she tends to slide off when she turns. I have to stay up and reposition her all night through.

Anyone knows whether there's some sort of a "wedge pillow" specially for kids to recline?

Short of buying a hospital bed that can crank up and down.

She's got humidifier thru her bipap, already on saline every few hours, and on machine suctioning every 3 hours. And she's pretty strong now and struggles past any rolled towels we install. So we're needed some heavy duty solutions I'm afraid. : (

Back to the struggling girl...

07 August 2010

One of those days...

There are days when I still break down and cry over Vera.

It pains me to see her still unable to sleep after all that we've done.

After all the expensive machines, giving medications, seen doctors, done sleep study, keeping her full for a good sleep...nothing has made a difference. She is still struggling to sleep, writhing in bed through the night, sometimes crying out in frustration and tiredness.

Beth looks after her in the night. I cannot bear to. I would be depressed by now if I did.

No amount of love that I shower on her will help her sleep through the night. And when tiredness gets to me, I experience a grief that I'm sure every mother of a special child knows - a sense of helplessness in watching their children suffer, and feeling the suffering as their own.

It was 5am and I couldn't sleep as well. How to, when your child can't?

That is why now I close the door. So I don't hear her waking up. I have Daen to look after and I need to stay sane.

01 August 2010

Who Do I Love More?

The truth is, I do not love Vera and Daen equally.

I love them differently.

With Vera, it's a fierce, protective, constantly pre-occupying kind of love.

With Daen, it's a calm, relaxed, joyful kind of love.

I get a fuzzy feeling when stuff like this dawns upon me. It feels like my 'understanding' has expanded. Perhaps this is the invisible gift parents receive from their children.

Milk Change

Bye bye Pediasure (for now).

We've switched Vera to Nan H.A. upon advice from her GI doc and another mummy who used it to combat her baby's constipation.

So far, the results have been good. Softer, yellow-green poop. Of course she's still on the stool softener Lactolose daily. What a great product. It doesn't get absorbed by the body, so no side effects.

Nan H.A. is supposedly easier to digest because the proteins have been broken down already. Not sure what that means but as long as it's easy to digest! It must be, because Vera doesn't not arch uncomfortably in her seat (as with Pediasure) towards the end of a feed.

We continue with more water, prune juice, Vitamin C and am thinking of Cod Liver Oil. But dunno if it will oil up the inside g-button.

Just so glad that we don't have to resort to suppositories on a regular basis.


Meanwhile, I've gotten her back on track for her feeding therapy (with a vengeance)! Maybe making up for not doing it the last 5 months.

To my surprise, she seems to be picking up where we left off. She even shows signs of improvement, which totally delights me.

The drill:
Step 1: Massage her face. This stimulates the oral cavity.
Step 2: 'Brush' lips with oral sponge swab. 'Brush' inside mouth as well. This primes her that it's time for 'stuff' to go in her mouth.
Step 3: Chew on Ark Probe. This gives her the cue that she has to bite down on something.
Step 4: Introduce spoon with brown rice.


She doesn't open her mouth wide to take the spoon. But if I place it at her front teeth, she sips it in, bit by bit, complete with clucking sounds that tells me she is tasting it. I listen carefully for her swallowing before the next spoonful.

She has a long way to go towards oral feeding. We may even cause another aspiration episode with this. But hopefully, if I'm very careful, we can inch forward safely, one morsel at a time.