Home care 20140328

It was home care Friday again. As usual this big baby was crying, with genuine big pearly tears, when she realize that this clinic is for her when we pushed her into the familiar waiting area.

Weight is at 11kg+++ while her height is at 88cm. According to the charts, physical growth is within healthy range.

The 1st person to work with K is important. They have the ability to make it into a cheerful session or a fussy session.

We had the speech therapist first up. There was promise of food into her mouth. Yummy. The offer of food was good enough for her to open up and welcome the therapist with smiles. We spent more time with the speech therapist as we worked together to see if there are ways to help her with speech.

For that, we put her in the tumble form feeder chair. It was at a pretty high inclination for K. It got me worried abit as K spends most of her time lying down flat or not almost flat. But hey we are in the hospital already right?

We were glad that she was able to handle it. Her spo2 maintained at a very good level and managed her secretions well ( she spits it out instead of swallowing). Maybe the motivation of food is strong enough to make her work hard.

With the food, we make her work her tongue to stretch and taste the food dipped on the chewie stick. We learnt some massage to help her with some passive movements around her lips area.

What we conclude at end of session was that she still had some limited movement in her tongue and lips, but we have to get her to put 2 and 2 together, There are definitely lots of work to be done in this area.

We are also at a time where the nurses and doctors feel that we can change K's button. We are using the Bard. Her valve is probably stuck and back flow happens when we unplug her feeding tube. Will be considering the MicKey or the AMT, preferably one that can allow feeding of purée as well.

This is K having her fun time after her rounds with the doctors and nurses, looking at the one of the kids ride KKH. 

K's lullaby

Enjoy these classic oldies. First up, George Benson's Nothing gonna change my love for you.

And next up, Eric Clapton's Wonderful tonight

K's been going to sleep listening to these songs on loop. Apparently twinkle twinkle little stars no longer does it for her to slip into sleep. She needs the soulful voices and melodic guitars to put her to sleep.

Must say she has got some taste there. I approve.

Clinic Visit

K made a visit to the paediatrician on Saturday. Normally we wouldn't go to the clinic as since her vaccinations are done. K's condition would usually present us with a choice of either stay home or go hospital. But it wasn't anything serious.....I think.

For the last week, she had a lump on her bum. It looked like and we suspected it to be haemorrhoid to us. She was having difficulties passing motion until last Thursday, where she was really uncomfortable the whole day. My helper used suppositories on her. It did made her pass motion. But the lump was still there. So Saturday, we went to the clinic to have a look and maybe get some cream for her.

We went to the Kid's Clinic at Seng Kang, the usual paediatrician. Mummy just makes a phone call to get a convenient time slot for the clinic the day before, and we just show up at that time. The staff there know K and her condition, and have always  accommodate us by putting us to the doctor as soon as it is convenient to do so. It cuts our waiting time, which is good. I am more concerned about exposure to viruses or bacteria than the waiting time itself.

After the check by Dr L, it wasn't hemorrhoid but a small skin tear. Probably due to us cleaning her up more than usual . So all we got to do was to apply the antiseptic cream for K. That's it.

K always has difficulty passing motion. She is already on the Nan 3 HA, which supposedly makes passing motion easier. But maybe due to the lack of muscles, she might not be able to exert the pressure needed to pass motion. We haven't been too adventurous with her diet since her PEG procedure as we are afraid of clogging up her g-tube.

PT

Just had a PT session just the last weekend. As usual, suspicious looks were given when we got into the clinic, thinking is this for me or just visiting?

And then fussing away as soon as she got onto the therapy mattress. Too late, little girl...

This session was on moving her joints properly and positioning of K. Ankles are a bit stiffer than last visit. So more time has to be spent in her AFO.

And also on how to work the simple sling for her legs. A thicker bolster would be better to support her thighs while her feet is suspended or sleeping. This would extend her hips slightly with the thicker bolster.

We always suspend her feet only. There wasn't enough support for her as she had grown taller :)

With the thighs supported this way, she actually got more movement in her feet. Of course, more movement in our case is any slight movement. It's something and we are happy about these little things. 

We could also encourage her by getting her to kick stuff while suspended on her sling. 

Floating K

It's been ages since K got into the water. The only time I blogged about it was K in this tub. This was before her nasal tube feeding, and the collection of machines that came along later.

After that, she probably had had a dip or 2 in a smaller, shallower tub. One where we could hold her easily around her neck.

Why no neck float? I think her therapist mentioned about the body getting heavier, so not so good to just use the conventional neck float for toddlers. And also it would be easier for us to position or reposition her head and neck so that we can better handle her secretions.

Anyway 2 weekends ago, we went back to my parent's place where they had a small pool. We brought K into the water!

She loved it. She was trying to move her arms and legs in the water. Clearly pleased to enjoy a different sensation when the jacuzzi bubbles started.

No swimsuit as she had outgrown the one she had.

We didn't have to hold her up too much. Only the head. Her legs actually floated. Anyway we got a small float so we had half her body on the float instead.

Spent a good 20 minutes in the pool without her mask. She refused to get out as we wanted to get her out after10 minutes (Spoil sport right?) But seeing she could still handle her secretion, we just let her be for another 10 minutes.

Will try it again as soon as the haze in Singapore clears up.

No park time this week

With the constant burning smell in the air, we didn't let K down to the park in the evening as usual. Kind of bored for her, I guess. So my helper carried her around the house without the mask for a few evenings. It beats laying down the same spot for the whole day.

Visit to the kitchen to see what's up with the cooking today.

Walking around the hall, busybody-ing

She refused to get down after being carried. My helper had to carry for a while. I came home and took over from her.

She just loves it. But we got to train our arms for her :p she is not the baby we carry about with 1 arm already.