Playtime with a new toy drum

With K, playtime is different from other kids. If we want her to engage in some play, we had to assist her. For example, play cooking while she is lying down will require us to hold her hands to move through the motions of say stir frying a toy chicken or some sorts.

Whenever possible, we always try to K to engage playtime with her own strength.

Since we loaned the tumble forms sitter, we usually just have her sitting up, watching the TV or maybe tasting some of the puree we feed her.

Last weekend, grandma bought her a toy drum set after her cousin destroyed hers. We decided to work the sitter with the sling frame while letting play her new drums.

The frames sits over her in the sitter, with the slings supporting her upper limbs from the frame. She gets to swing her arms on her own to bang the drums.

Her grip is weak as she drops her drum stick after swinging it a few times. Had to leverage on the sling to support it.

While sitting up, this little miss busybody also gets to look at our neighbours next block (Full length windows are great!) Her eyes are ever so busy.

She sits up at 45-60 degree angle for about 40 minutes, dropping the angle once to let her clear her secretion when she didn't manage it too well.

When the park downstairs is ready, she can sit up, peer down to look at the activities going on down there if she isn't already there.

Sitting up high at PT

Before we went into the physio session over the weekend, we had a talk with K before we went in. She was always kind of upset at PT and home care sessions.

We told her that we are going to see the PT now. What will you do when you see the therapist? K laughed out loud.

GOOD! We like a brave girl!

Unfortunately her brave facade gave way the moment we wheeled her into the gym. Only after viewing a number of her favourite videos then she stopped fussing.

We tried sitting her up on the tumble forms chair during the session. Usually we don't put her so high up as she may not be able to handle her secretions well enough. But she did managed her secretions while sitting up during the session there. She seem to enjoyed it too.

Sitting her up has the advantages where the lungs will be under lesser pressure as compared to lying down, allowing better gas exchange.

She also has a good view sitting up. Being a really curious (or busybody) girl, she loves this point of view.

We took the offer to loan the chair home. Together with an arm sling, she might have some way of having her own play time with some light weight toys. Let's see if we can work some activities with her on the chair.

Star pals engaged

Recently we engaged the services of star pals. They have a team of doctors, nurses and social workers who can carry out regular home visits of the patients to check on the well being, provide medical treatment or therapy services.

With their services we hope to stay out of the hospital as much as possible. Hospital stays drains the energy out of everyone.

So far they have done an initial and a follow up visits.  To get to know K and her condition, they ask lots of questions about K.

These questions are fine actually. But there are some questions that got me thinking like how's the rate of breathing without the BiPap compared to with it.

It struck me as I realized I haven't been noticing these details about K for quite sometime. Sad to say,we sort of pride ourself on having a mundane life. Because most likely any changes happening to K's health are areas for concern. As I always say to my friends who ask about K, no news is sometimes good news.

Having someone to come in and ask some questions occasionally is good. It serves as a reminder to be more attentive to details even in a lull or in good health.

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. 

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. 

Biting again

Recently K has the habit of putting some things into her mouth again. Why again? Well because as a baby, she already went though the phase of putting her fist, toys, whatever she can get on her hands, into her mouth.

Now she is doing it again, but not fervently, so we are ok with it. 

Through these actions she is doing, at least she is trying to move her arm and put the objects near her mouth or knocking it against her nasal mask. part of the mask is made of hard plastic, so it produces a knocking sound when knocked against her toy.

In time for Christmas

It has been about about 4 weeks since Kaelyn was discharged from hospital. She is home and in jolly good spirit. She also had the chance to receive gifts and unwrap presents for Christmas. (Last year Christmas was spent in hospital)

She went in with a high fever and cough. we had to go through a bad episode of having to fight to help K breath and stay alive.

Home care session (23/08) and reflux issues

Kaelyn measured in at 10kg++ and 81cm in length. Not much weight increase this time round so feeding stays the same. An increase of about 2.5cm in length/height.

She got to try out the cough assist this time round as we requested for it previously. We only tried out a few sets at +-10 pressure settings. This is a very low setting. I guess they have their concerns as I think KKH is trying out the cough assist machine on such a young patient (Kaelyn is 18 months old) for the first time.

I think there was a positive outcome as her SPO2 increase from her average of 98 to 99-100. I shall give it a benefit of doubt that it is the cough assist machine working.

The next time round in hospital would be for her PEG procedure. I really can't wait for this actually as there is a reflux issue surfacing now. Recently Kaelyn had reflux again. This time while suctioning for her. It is worrying. I will try to schedule it earlier if possible.

2nd Home Care Session (10/05)

10th May was Kaelyn's 2nd home care visit. It was supposed to be a session with 2 other kids. But none of them turned up, so Kaelyn has full attention from the therapists, nurses and doctors.

We got Kaelyn and daddy weighed in too. 9.6kg. Dietitian decided she has put on weight too fast so reduce her milk powder feed by half cap. We feel it in our arms too when we carry her :P

She got her height taken too. 78.5cm. And she is growing fast such that the occupational therapist mentioned that she would probably need a cuddlebug  in few months time.  Oh well let's delay the new stroller for as long as possible. It will be a rather substantial cost :P

Mummy mentioned if she could stand, she would have reached mummy's bum. But maybe if she could stand, probably gravity and weight would not have let her grow as tall as she is now.

We also decided to start the ball rolling for Kaelyn undergo the gastrostomy procedure. 

NOT gastronomy. I wish she could though. Since she has to be on tube feeding for long term (very long), it makes sense to do this and fundoplication by the way to reduce the risk of reflux. But it would be months as she has to undergo appointment with the surgeon and perform some tests before they would go ahead. 

Finally a session at L

We have been making appointments for Kaelyn to attend L's therapy session, but we have to put off thrice because of Kaelyn's. Finally after 3-4 months, Kaelyn was well enough to attend.

The session we had was mainly about fine tuning our technique and timing for chest physio and suctioning this time round.

We also tried sitting her up which is fine as we do it at home sometimes. We flipped her over on her tummy as well. This put her secretion in sort of a free flow mode, which is good as it will not clog her throat. Even L's so call water resistance membrane cloth was not match :)

We tried flipping her at home after the therapy session. She wasn't as cranky as she was at the therapy session. Probably she was surprised by such a move the first time round at the therapy session, considering we didn't put her in this position much. While lying in this manner home, she watched enjoyed her back rubs and massages.

All 3 of us took turns flipping her on her tummy and back. All this flipping back and forth probably tired her out. She was cranky at end of session and was knocked out when we put her back into the stroller.

This is her having her nap in the car while on the way home. Good nap.

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Exercise station

We have a stainless steel frame. It fits just nice over her mattress during the day time. For now, we use it to hang slings for her legs. It enables her to move her legs more as it is supported against gravity and friction.

I try to lie beside her and do scissors with my leg, hopefully she tries to imitate me. It is good exercise for me too. She does have little little movements. Although limited, It's good for her to exercise whatever muscles she still has under control.

The VFSS Session

This afternoon, we went to the hospital again. This time round, the doctors are interested in how I eat. They want to see how the food will travel in my stomach body. They call it a Videofluoroscopic Swallowing Study (VFSS). This is because of the possible weakness that will happen in the area of the throat that aids in swallowing my food and drinks. They were afraid that my food and drinks will go to places they are not supposed to go to. Hence they will look at if that happens though this procedure.

Living the life

These few Saturdays, I have been having a lifestyle mum and dad has been yearning for. Massages in the day. They have been attending a 3 session long massage package for me. So in this package, I get to be massaged and  mummy and daddy will learn how to to do it for me too. They'd better learn it good :P

For the last massage session, I came in without my pants. This is what happens when daddy is in charge of putting together my wardrobe for the day. Tsk tsk.