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Things I’ve learned recently

NO-ONE’S INTERESTED IN WHAT YOU HAD FOR LUNCH

I got a bag of pecan nuts as a gift this morning. As I opened one and tried to prize the fleshy, edible bit from the disgusting bitter woody parts, it shot out and landed in my rubbish bin. And I promptly dug it out and ate it.

Think I need to start Googling FOOD DEPENDANCE DISORDER?
No?
Okay, maybe I’m-a-mum-and-will-be-damned-if-I’m-gonna-waste-good-food disorder.
You know? The same thing that makes you eat your kids’ leftover lunches…

NOR YOUR SLEEP-DEPRIVATION

Enough to say that L and I sat looking at each other with wide wide open eyes since 22:00 last night. He has bronchitis, he doesn’t breathe well. And I’d completely forgotten that the medication to unblock his sinuses also doesn’t make him drowsy, but wakes him up completely. Not that I wasn’t warned – it says amongst the list of possible side effects: Insomnia. (Note to self: READ THE PACKAGE INSERT BEFORE YOU GIVE THE MEDICINE TO THE CHILD).

DON’T TRY AND HAVE A GROWN-UP CONVERSATION WITH YOUR HUSBAND WHILE YOUR TODDLER IS READING THE PAPER.

Because you’ll have to stop in your line of thought 1000 times to identify the make and model of every car advertised in the paper and if you’re wrong, he’ll correct you. But first he’ll scream AAAAAARGH! And your baby – who hates it when his older brother is upset – will fling his arms up into the air and look shocked and wake up even more. And just as you think you can resume the conversation, your toddler will scream AAAAAARGH! again.

“What the…?” You’ll ask.
“The paper is broken. Pleaaase fix it?”

And you’ll sigh as you put the paper together again and curse your husband’s perfectionism genes.

I HATE DEALING WITH DOCTORS

“His chest sounds wet”
“Gee Doctor. You think?” (Now would you mind writing that script for the antibiotic I actually came to collect. A bit faster, please. My child is drowning in his secretions and I need to reunite him with his suctioning machine. Also, my two-year-old is eyeing that bottle with suckers and unless you want to deal with the results of a sugar-overload in a child who has already skipped his nap….)

OUR DOGS ARE AT THE LEVEL OF SELF-ACTUALIZATION ON MASLOW’S HIERARCHY

They are desperate to move to a different (better?) suburb. Why else would they bolt out of the yard as soon as some unsuspecting human opens the gate? And only return two hours later demanding dinner. Or not at all – as our housesitter found out. Luckily a kind man got our phone number off Sam’s nametag and phoned us while we were in Stellenbosch to inform us that our dogs were resting by the side of the road 2 km from home.

THE STIFF UPPER LIP OF THE BRITISH IS NOT SUCH A BAD THING

So the neighbours can carry on with their barbeque (SA braai) while a madwoman with wild red hair stands in the cul-de-sac and shakes a balled fist after two disappearing dog tails, shouting: OKAY GO! JUST NEVER COME BACK, YOU HEAR. NEVAAAAR!

NEVER CURSE IN FRONT OF A TODDLER

Even though your dogs running away makes you feel very helpless. Because your toddler will remember the less-than-savoury word you used. And he will use it in turn. Even two months later. In front of your mother-in-law.

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Detour

I sat sipping my coffee in the shelter of a coffee shop in Struisbaai, L sleeping peacefully in my arm and the sun sparking off the turquoise sea in a million diamonds. M and D were playing on the white beach far below.

I’m happy, I thought. And the realization jolted me, because surely, I have had more reason to be happy in the past. And yet my recollection of those seemingly perfect times is not one of happiness…

Now I’m happy because I choose to be. Only I know how far I have traveled to get to this place… and at what cost happiness comes.

In Struisbaai all of us became sick. M coughed and L got another bout of tonsillitis. We had to find a doctor before we left for Stellenbosch.

So, my plans to visit with friends in Cape Town – a short distance from Stellenbosch -came to nothing. Early Saturday morning Elbie, the friend we were staying with, left to go to a birthday party, D attended a day-long choir practice and I was alone with the kids. The weather was sunny, but windy and cold and I stayed inside with them, promising M that we would visit the play area close by as soon as it became warmer. I couldn’t get them to nap and I kept on running up and down the stairs to attend to L and keep M from doing too much damage to a house not meant for kids. Cabin fever struck and I knew we had to GET OUT. I loaded the pram with all our suctioning equipment and the converter and battery. I dressed them as warm as I could, grappled with the double lock on the security gate and set off.

Within a few minutes I knew the outing was doomed. M kept running away from me, I couldn’t control the pram with the suctioning equipment and the battery AND keep L from arching himself out of my arms. In fact, the pram developed a mind of its own and either bumped into the curb or headed for the middle of the street. The wind blew us nearly off our feet and I feared that I didn’t dress the two kids warmly enough. Yet I was sweating from the effort. I had to stop every few meters to suction a distressed L and had to put the pram’s brake on to stop it from running down the steep hill. We turned around.

The day went rapidly downhill from there.

M arrived upstairs without his pants and diaper mumbling something about “poo”. Fearing the worst, I left L and ran downstairs and, yes, there it was… On Elbie’s lounge rug. Fortunately it was easy to clean up.

Later I heard something fall downstairs and found M playing with the T V remote control batteries. I replaced the batteries, but couldn’t find the battery compartment cover. I forced M to help me look for it, but he kept losing interest and wandering off. “Gone” he shrugged absentmindedly when I kept pressuring him. Later when Elbie came home, I confessed and – you guessed it – was told that the remote control had lost its cover years ago….

L vomited milk for the first time since he had his Nissen fundoplication done and it happened so fast and quiet that he turned blue before I realized something was wrong. Fortunately I had the suctioning machine next to me and I could clear his airway pretty quickly.

D had arranged for a trained nurse to babysit for us so that I could attend the mass choir concert that night. Even the sweet reassuring air of the nurse couldn’t calm my worry completely. Yet I enjoyed the concert and the cocktail party afterwards. It was nice talking to grown-ups and meeting D’s university friends. We came home to find both children fast asleep and happy.

The next morning we had a leisurely breakfast outside a friend of Elbie’s coffee shop in Stellenbosch. M made friends with the tame rooster and the waitresses and L dozed off in my arms. Later we drove for nine hours to Bethulie where we stayed with our pianist friend, Benjamin.

Last year, I stood in front of rows upon rows of gravestones salvaged from the second Anglo-Boer War concentration camp outside Bethulie (now covered by the Gariep dam) and cried when I saw the ages of the children who died – 3 days, 1 year, 10 months….thousands of them. I remembered the stories I was told. Of a healthy child who was sent to get medicine for a sick sibling from the camp authorities and who died after being given the “medicine” by mistake. Of ground glass being mixed with sugar and handed out with the meager rations. Of women and children being taken from the farms by the English and held in these camps where many of them died. Of farms burnt down. Of a nation that had to start over from scratch.

This year I sat on Benjamin’s wide verandah and ate breakfast listening to his latest recordings, too weary from my own battles to think about those of more than a century ago.

On the last leg of our trip, we asked M what his favourite part of the holiday had been. We didn’t really expect an answer. He is only two and a half and we visited so many new places and people. But he thought for a moment and then answered softly:

“Playing with Jaco and Carla and Tiaan and Narisa. There were cars and a tractor and I sat in the boat, Mama.”

And as an afterthought.

“I stepped in a thorn. At Struisbaai.”

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Apparently the fact that we are barely sleeping five hours each a night is not nearly enough punishment for us. No. We need to take our two children, overload the car with all the paraphernalia that children under the age of three need and drive
1 400 km to the OTHER END of South Africa to go and sleep less than five hours each a night OVER THERE and THERE and THERE and finally THERE for THIS.

If my husband says I don’t understand him, he is very right. (Actually it is more the concept of a reunion that I don’t get. I’m just not sentimental that way.) But he has been looking forward to this for more than a year and who I am to deny him his pleasures?

Besides. I get to spend more time with him and the kids. They are too small to bicker and fight on the road and they are pretty used to travelling. I get to see friends and family that I’ve missed. And we visit particularly beautiful areas in South Africa. Probably a win-win situation?

We’ll be gone for more than a week. Toodledoo.

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200 hours of ABR in one month – Who-hoo!

If one takes into account that ABR is mimicking the breathing of a typical child for the first six months of its life to develop core strength in the torso and neck, and you work out that this amounts to between 4000 -5000 hours of breathing, then 200 hours of ABR is small potatoes indeed. But this is a milestone in that the ABR organization takes 200-300 hour’s work in a particular area as an average gauge for visible improvement. For instance – 200-300 hours of ABR on the chest should visibly improve volume and strength in the thoracic area…

To give you an indication of the handicap we are busy overcoming, I have to describe L to you.

L’s brain damage occurred as a result of oxygen deprivation after he was born. We have estimated that he has been without oxygen for at least 10 minutes (probably more). The fact that he survived is a miracle in itself.

L has sustained damage all over his brain. We were told that his CP would probably emerge as the dystonic type because of the damage to the basal ganglia (the movement centre of the brain.)

Initially L was very floppy with all his muscles being affected. We know that he can hear and see, but we are not sure how well. If I have to guess, I’d say his hearing is better than his sight, because of problems with focusing (eye muscle involvement). I still have to pluck up enough courage to test both his hearing and vision properly – we’ve tried to before, but he refused to co-operate!

Later on, L started hyper-extending (arching). This is extremely distressing – not only to him, but to us as well. And once he goes into a pattern of hyper-extension, he can carry on for hours. With the hyper-extension he started getting more spastic in his arms. His legs are not as badly affected as his arms, but I’d also describe them as more spastic than hypotonic.

Practically this means we carry L everywhere. L gets extremely distressed when he is put in a half-reclining or upright position such as in a carseat or feeding chair. Laying him down on a bed or any flat surface while he is awake causes him to hyper-extend. I think his dislike for a half-reclining or upright positions stems from his breathing problems and that, because he is so extremely weak, his lungs are compressed by a more upright position. Besides carrying him, we also have to constantly fight against the hyper-extension. Some nights I go to bed with my arm muscles burning with fatigue. He is so very strong when he is hyper-extending.

I believe that we are still like bulls in a china shop as far as the brain is concerned. Initially the hyper-extensions scared me because I thought that they are manifestations of his brain “mal-functioning”. They’re not. His hyper-extension is simply the result of extreme core weakness. Any movement he makes with his neck (which is a limb for all intents and purposes) is not controlled because his trunk is weak. So the movement is exaggerated. (hyper-extending). This scares him and he moves more (more hyper-extending) Until it becomes a pattern. I’ve noticed that any discomfort (pain etc.) triggers the hyper-extension or makes it worse.

He is not able to swallow very well because his mouth is open and his head is back. However, he does swallow. I can hear him swallow and when we feel brave and feed him per mouth (we have to close his mouth and stimulate a swallowing response) the food does come out the other end! We feed him through a G-tube 99.99% of the time due to the risk for aspirating his food and milk. We have done swallowing therapy but soon realized that we’re fighting a losing battle due to his body not being aligned properly for swallowing. In time we hope that ABR will improve that as well…

These are only the tip of the iceberg, but when we were assessed for ABR our main priorities were:

Getting L to BREATHE PROPERLY! I.e. strengthening his chest and abdominal muscles as well as his upper respiratory airways.
Getting his neck into position and his chest aligned with his neck for swallowing by doing ABR on his mouth floor.
Expanding his forehead which was very narrow by doing ABR on his temples.

D and I took a long hard look at these priorities. We realized that L is only 10 months old. We need to maximize any time we have to stop any bad habits from developing and aid him in growing into the right patterns. ABR is no miracle cure, nor does it work fast. But we have had great reports from younger kids.

So, Anna and I have been doing ABR almost every waking hour. I think our Occupational Therapist has been worried that we are doing ABR at the cost of Neuro Developmental Training and…. she’s right! But I have had to be extremely brutal in prioritizing. It does not help I try to force him into neuro-developmentally beneficial positions when his body cannot support them.

After a month of doing an average of 7 hours a day I am happy to report that:

L’s breathing has improved in leaps and bounds. Even when he is unwell or when he is battling secretions, his breathing is deep and even and involves his chest rather than his abdomen. Obviously we have a long way to go, but from now on L will also start to add to his own development by simply breathing well…

I can put L down on the bed and he will actually keep his head more in a midline position – watching us or the mobile above him. Most importantly: the hyper-extensions are diminishing!

This weekend we put him in a car seat that the OT and I have adapted to be more upright and L actually sat in it for more than 5 minutes. He wasn’t too happy, but he didn’t stress to the point of turning blue….

Also this weekend I could hold him sitting on my lap in an upright position with minimal or no support of his neck. (All neuro-developmetally correct and everything!) I even left him without supporting him in any way for a few seconds. Developmentally he reminds me of a four to five month old baby – just pre-sitting. Except that his head control is still hampered by some hyper-extensions and I don’t harbour any illusions about the possible length of his pre-sitting stage! (Then again, who am I to set a ceiling to the speed of his development….?)But he sat and watched all of us happily until he got tired and started grizzling.

I can see his temples expanding and for those of you wanting the stats: his head circumference has grown by a centimeter since July 28th. We have been told by a neurologist that his fontanelles would close prematurely. L’s fontanelles are still wide open – 3cm by 3cm at least. If you take into account that the average time for closure of fontanelles is 13.8 months and that L is 10 months old……it means his head and therefore his brain is still growing…

His mouth is more closed and he is developing a jaw line. The other night I put him down to sleep and I jumped when I heard a completely new sound from him – sucking!

Everybody seeing him is remarking on how much he has grown and how much stronger and comfortable he looks. He makes eye contact, responds to new voices and gets very annoyed when I face him away from something or somebody interesting. When I sing him songs, accompanying them with gestures and facial expressions, he watches intently and follows my face or hands with his eyes. He watches the pictures in the books I read to him and responds appropriately (as far as his weak facial muscles allow). One of the story books has pictures of a cream-coloured Labrador – looking exactly like our Sam. I read him this book and his expression of surprise – Look! There’s Sam!- is just too precious!

L communicates in his own way. The formation of specific vowels and consonants are hampered by his open mouth, but he has sounds for irritation, pain, loneliness and just talking for the sake of talking!

All in all I am feeling very positive. I take care to focus on the positive and I try and instill positive words and thoughts into both the children and my husband. Oh, I know the realities are hard and that we have a long road ahead of us in human terms. But I also know that there is a living and loving God looking after us and that I have Him to look at – not reports or scans or human knowledge….

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Who’s afraid of the big bad wolf?

Back in November last year when L was born, I wasn’t treated very well by the hospital nursing staff. One day, when I feel a bit less bruised, I’ll tell the whole story, I promise.
I bled profusely, had to have emergency surgery and blood transfusions. Subsequently we found that my medical records were falsified to make it look like a nurse had checked on me every half an hour. In fact, I spent almost three hours completely alone in the labour room – waiting for news on L. Later I overheard two nurses (who thought I was too out of it or too stupid) agreeing to fudge the records, acknowledging that they were going to be “in sh*t for this.”

We also had issues with the hospital about their habit of apparently warning theatre staff when somebody with a medical or legal background or any of their family goes to theatre. In our case, we were phoned by the surgeon who had to do L’s PEG surgery as he was about to start surgery. After he overheard theatre staff saying that D would “sue his pants off” if anything ever happen to L. D never said this. (It is very clear to me that the nursing staff treating me didn’t yet know that D has a legal background…)

We took the matter up with the hospital nursing manager who promised to look into it and discipline staff involved. Although we clearly had grounds for legal action D and I were too miserable about everything going wrong in our lives to spend time or energy on this. We decided to drop the matter.

A month ago we requested L’s medical records to help our insurance company investigate a fraudulent claim. The hospital dragged their feet and eventually said we could have the records on payment of more than R200 for photocopying expenses. This was when D and I decided that we had better also request my records – before they went “missing”. I also thought it would help in my healing process to confront their version of what happened.

An e-mail correspondence and some phone calls with the hospital group’s nursing manager (in another city, at the large hospital group’s head office) ensued. D mentioned to her that we were still feeling unhappy about a number of things. She expressed her concern and D asked me to write to her to tell her what my problems were. I did. Next minute we get a very short e-mail saying we should take up any outstanding matters with the hospital in question. She also said that they don’t want to withhold any information from us and that they just need to recoup any costs. The tone of the e-mail irritated both of us immensely and we responded by saying that we consider taking up any issues with the hospital, a complete waste of time. We are aware that they may not really withhold any information from us and so, could we please have both our records at their receipt of the money…? We cc’d the message to the regional nursing manager and the hospital manager of the local hospital

Within an hour we had a reply. No. An apology. The e-mail ended abruptly because the lady had “computer problems”. She actually meant to add that we could have the records for free as a gesture of goodwill.

Goodwill. Ha.
Also. Computer problems?

I cannot help feeling intensely amused by this. If I were them, I would have gone through the records with a fine-tooth comb to see if there was any thing dubious in them. And yes, I would definitely also have supplied the records for free… Who else is with me that I just may find the records “altered” to some extent? Fortunately I have an extremely good memory.

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I’m on my third cup of coffee for the morning while I’m waiting for the e-mail that will contain my directorate’s quarterly report. And hopefully inform me of what I need to do a presentation on at next week’s midterm review. I assume I need to report back on everything we’ve done the past six months.

Except that I cannot remember a single constructive thing that I’ve done these last six months.

Oh wait.

Spent 14 days in hospital with a sick child.
Started a blog.
Gained great perspective.
Done 255 hours of ABR.
Made new blogging friends.
Made peace with some (but not all) of my circumstances.
Seen my kids grow.
Cried countless tears.
Found new joy.

Do these count?

No?

Ah well!

I hate being a working mother.

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A season of change

When somebody first tells you: “If he survives, he’ll probably suffer from Cerebral Palsy”, your brain goes into denial mode. They must be wrong.

Then the reality kicks in and you think to yourself that you are living a parent’s nightmare. The most basic wish every parent has for a healthy and normal baby has been denied – in fact, you have made choices that have led to your child being denied normalcy and health. Month follow month. You’re in and out of hospital. Acceptance comes and goes. Hope remains.

Until, one day, you realize that life with a disability is still…life. And that being able to hold a small warm body in your arms is infinitely better than empty arms. This may be your life now. (Which isn’t saying that this will remain your life. Ahhh. Hope.)But there are plenty of joys to be found in the hug of small arms, fragrant wisps of hair and bluer than blue eyes and if you keep on regretting past choices and losses, the joys are passing you by.

Grace continues. And your life becomes chocolate and chili.

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I’m giving up. I’ve been trying to upload photos on Blogger for the past two days and it just won’t work.

So I’ll just say that it is Spring day here in the Southern Hemisphere and that, despite the still cold weather, just the thought that this long cold winter is finally over is enough to make me feel a great deal better….

It’s my sister’s birthday, too! We live too far from each other to celebrate together, but we are indeed close in spirit. When I phoned her to congratulate her she asked if I had been awake between 2:00 and 4:00 last night. As it turned out, I was and this is not the first time that this has happened either.

(Guess whose fault that was? Hmmm? Yes. Him. The one with the red hair and blue eyes. The spoilt brat who is perfectly comfortable in Mama’s arms, but starts arching and complaining when he is put in his cot…)