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Soldiering ahead

It took a bit of soul searching to decide whether we should soldier ahead with the ABR training this week. L has after all just been discharged from hospital.

Apart from being a bit more verbal and nervous (crying more and making sounds I haven’t heard him make before) L seems okay. It is possible that everything is just loosening up in his lungs or the fact that he is trying to cut two teeth simultaneously, but he is simply pouring with secretions.

As a matter of precaution, the paediatrician has suggested that we put him back on a minimal dose of phenobarbitone. I don’t think that the jittery movements we have seen in hospital were seizures. I do think that they were reactions to stress. Having a tube down your throat and a rectal thermometer probably would stress anyone out. I’ve noticed in the past two days that he shakes after we suction him – especially after a lengthy suctioning session. Which kind of reinforces my stress reaction theory. I wish suctioning weren’t necessary.. As for the phenobarbitone, he is on barely 5 mg once daily whereas he used to be on 20mg twice daily. (We discontinued that in February after three EEG’s didn’t pick up any seizure activity.) And the doctor only prescribed the current dose for a week.

Anyhow, we have decided to go ahead with ABR. We’ll travel to Johannesburg tomorrow to attend an evaluation and then on to Pretoria where we’ll stay with family – an aunt of mine and her husband. D’s sister offered to look after M for the two hours every day we will be involved in ABR. We should return home next Sunday.

I am looking forward to have him properly assessed and have Anna, his caregiver, receive firsthand training from the experts. I am also looking forward to the time with both boys. Just hope L keeps on improving in terms of health…..

I’m feeling a bit tired and overwhelmed at the moment. Thanks for your comments to my earlier post – it really boosted my courage. I’ve noticed that my policy of taking one day at a time is effective, but when I’m down, it seems like I lose touch with the goal. I need to lift my eyes from my feet – taking one step at a time – and focus for a brief moment on the dreams I have for tomorrow.

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So, we had to face the choice we knew we most likely would have to make at some stage or another…

A fever that I could not bring down, hospitalization for broncheo-pneumonia and by Thursday evening last week, I thought L was on the mend. I was totally unprepared for D’s panicky phone call from the children’s ward at the hospital:

“You better come quickly. His Oxygen saturation is 50% and his heart has stopped.”

By the time I arrived, a sleepy M in my arms, the paediatrician and trauma doctor was there and they were resuscitating him. The night nursing manager was also there and she grabbed my arm: “Pray” she whispered urgently.

I stood watching them.

“Lord. “I prayed. “I’m not ready to let him go, but you know best. If you take him, just, please take him now.” I was shaking, but after praying, I could feel myself calming. One of the doctors left his side and I went to stand next to his cot.

I called his name and he responded. I told him that I love him and asked him to fight. He gave a little sigh as if to say that he was trying…

The doctor called us to one side:
Suggesting making him comfortable. Not to ventilate. His condition (CP) is quite bad. Bla Bla Bla.

In other words: Let’s leave him to die.

I could see D was halfway convinced and I knew I had to do some very fast talking. Staying very calm, I stated that I disagreed. I reminded the doctor that he only saw L as a very sick baby. The degree of response is not like he usually is. He is a little boy with the ability to respond, love and the will to live. If it means ventilation, so be it. We cannot and we don’t want to keep him ventilated for ever. But we owe him the chance to fight.

I saw clear relief in D’s eyes. The doctor clearly disagreed, but he transferred L to ICU and ventilated him.

By the next day we had a diagnosis. Kidney failure. The toxins in his body were double the levels of that of an adult. They supported his respiration, brought down the high levels with medication and gave him antibiotic. Two days later, his kidney function was restored and he was on minimal levels of ventilation. On Monday, he was taken off the ventilator and this morning I could take him home from hospital.

I was interesting to see the nursing staff and doctors starting to respond to the little boy behind the label. I think we have all learned something about courage and the ability to be happy despite circumstances…

Once again, a miracle.

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Miracles

“You’re my life’s one miracle” sings Celine Dion. The city’s lights are flickering on down in the valley as the last light is fading away. The full moon hangs above the city -getting more and more luminous the darker it gets.

We are twirling and rocking with the music, L and I. His fragrant hair tickles my neck and his rag doll body is so close to mine that I can pretend that we are, once more, one. That he is still safely inside of me. He is so quiet that I suspect for a moment that the music and rhythmic movement had lulled him to sleep. But when I peek, I see that his eyes are wide open and blue. He is content.

Happy that his tummy is full, that his nappy is dry, that he has no pain and that the noonoos in his throat are not suffocating him. He is happy to have my full attention and not having to compete with his brother’s wails: “Put him down, Mama!” The lot in life of a second child…

Supper has been prepared and the other two men in my life have left to run an errand. For the moment I don’t have to tune in to three channels. I don’t have to feel nagging guilt about the portions of attention and time that I have to measure out during a day that, after all, has only so many hours. I don’t have to stretch my lap by layering legs, M’s under mine, L’s over M’s tummy to accommodate M’s need for a quick nursing session. I can cuddle with L, kiss his reddish-blond wisps of hair and I can even dry a few tears listening to the sentimental songs. When Celine sings:” If I could, I’d help you cross the bridges that I burnt” my tears run a little faster and I breathe, ” Oh Lord. Please…”

When I pray, I don’t pray for acceptance or strength. I love my son unconditionally, but I choose not to accept the CP that makes his life a living hell sometimes. And strength? Strength is a given, because after all, what other choice do I have? No, when I pray, I ask for 100% healing.

I start with his head and work down to his toes and I pray for the perfect workings of each and every aspect of his body and mind: A clear mind, the ability to remember, understand, interpret and solve. The ability to perceive and hope and dream and interact with others. Emotional stability. I pray for sight, for hearing, for smell and taste. I pray for eyes that can blink and a mouth that close. I pray that he will be able to swallow and suck. I pray that he will be able to nurse. I pray that he will be able to speak. I pray for a strong and healthy body, the use of his arms, legs, hands and feet. I pray that he will be able to sit, stand, crawl, walk, jump and run. I pray that he will have life in abundance and I even urge the Lord to hurry up! But He knows that there is a time for everything and this I have to accept.

This weekend we met with acquaintances who I hope could become friends. They belong to a small church and this whole congregation – total strangers to us – took us under their wings while L was in hospital. For two weeks straight, they brought meals to our door once a day. Always with the simple message: Accept this with our love. I know that they have been praying for us ever since.

After watching the ABR DVD with us and experiencing the difference that this therapy made in the lives of some children and young adults, Dene said:
“I am going to pray from now on that the Holy Spirit will work in synergy with what you are trying to do with ABR. For every hour that you put in, the Lord will add many more.” And right there, with M taking a bath 23:00 at night and with me holding a wide-awake L, this is what she did. As the words tumbled out and mixed with the pleadings of my heart, I could see them rise beyond the ceiling…up…up to where they belong.

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Sleep training?

If anybody has some advice for me, I’d be grateful.

I have never been fond of the idea of sleep training/ crying it out. With M, we slept badly for 16 months. He would wake up four or five times a night, I’d nurse him back to sleep and he only started sleeping through when he started walking. He has also been sleeping with us since he was a few months old. Getting up every time, was just too much for me.

L has actually been sleeping better than M at the same age. Especially in the hours between 20:00 and 2:00 when he may only wake up once for a 23:00 feed. But when he wakes up in the early hours of the morning, I can often forget about sleeping again. He produces one stinky nappy after the other – and to him this seems to be enough of an effort to keep him awake. In order to get enough sleep, I have to go to bed the same time as the kids 19:30 -20:00. Needless to say, this leaves me with no time to do anything!

L has breathing difficulties. Because he doesn’t swallow well, his airway gets blocked quickly by saliva and sectretions from his lungs. If I position him correctly, he can sleep for a few hours or more without needing suctioning. But once he is awake, he is sufficiently annoyed by the stuff in his airway to start stressing – making his breathing sound awful. In the past the slighest change in his breathing would have me awake and running to pick him up.

In actual fact – and I’ve only realized this fully during the past week or so – he is often capable of reposistioning himself so that he can breathe and settling himself back to sleep. By taking him out of bed and suctioning him, I’m only managing to wake him up even further.

I’ve changed his feeding schedule to 200ml 5-6 times daily. If he is sufficiently awake during the nightshift, I’ll give him the extra feed at 3:00. If he isn’t, I assume he is not hungry enough and I leave him to sleep.

He has also been getting more solids during the day. (Some of it even successfully by mouth as evidenced by the butternut-coloured nappies I change. Yay!) This seem to postpone the need to produce a stinky nappy. This morning, he only woke up to poo at 5:30.

The thing is: I want him to sleep well. For his sake as much as my own. But how do I achieve this?

Please share with me your thoughts and experiences?

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South Africa

Since the US has just commemorated its Independence Day, I thought that I would put up a little photo collage to show you some of my fondest memories of South Africa and why I am also feeling patriotic about my country. Well, mostly!

I’m not good with web design, so I’m going to venture into the unknown and try and put together a video – which I’ll leave in the sidebar area as soon as I get it done. Brave of me, huh? This way I can tell you the stories behind the pictures too. But I’ll also include the pictures in the body of the post so that you can view them that way.

Some of the photos are of before we had children and some of them feature a much younger M. We simply haven’t had that many photo opportunities with L yet, but I’m hoping that we soon will. So, let’s start, shall we?

When anybody mentions the word South Africa, this is the picture that immediately pops into my mind. All shimmering heat and hazy wide open spaces. The picture was taken on my dad’s Karoo farm 40km from Beaufort West in the Western Cape. The Karoo is semi-desert – very dry, sparsely populated and only suitable for game or sheep farming.

The Drakensberg is a mountain range stretching over a large part of South Africa. Literally it means “Mountain of the Dragon”. Its rocky peaks are no use for rock climbing as they are of sandstone. Snow – an unusual sight elsewhere in South Africa – can often be seen on the Drakensberg in winter. We live close to the “Berg” – as it is known. The photos were taken in May last year and show D, my husband and M, our son on happy meanderings in front of the Cathdral Peak and Monk’s Cowl. We were too close to get decent pictures of the peaks, but you get an idea of the landscape. D was brave enough to even go swimming in one of the icy cold rock pools.

This is cheating! But this is my blog and I can cheat if I want to! Of course Namibia is not part of South Africa. But is is part of the Southern African region and SO worth sharing with you.

The first photo was taken while we went quadbiking in the Namib desert in the dunes outside of Swakopmund during June 2002. I always feel that having a desert with the sea’s waves lapping in the background is such a contradiction in terms!

The second photo of Namibia was taken in June 2004. M is four months old and climbing the highest dune, Dune 45,
in the Namib desert with his dad. I’m standing below them, literally shaking with fear and pleading with D to come down with my baby. M, of course, wasn’t in the least phased by the adventure…

Sunrise, one late winter morning. The view past the deck of our house. I was trying to capture the blooms on the tree in front, but of course it was still too dark. I like the silhouette effect it creates, though. We live in an area that could be described as sub-tropical. A troop of monkeys regularly visit and drive our dogs to distraction. A bushpig also appears occasionally.

This is Oubos – on the Southern coastline of South Africa.
It is in the Tsitsikamma area which consists of large areas of natural bush with some huge centuries old trees. Because it is so far South and because of the angle of this particular little beach, this is one of the few places in South Africa where the sun seems to rise from and set in the sea.
Oubos is a pretty special place. The smell of fynbos – bushy plants smelling like herbs – permeates the air and fights with the smell of the sea.
The photo was taken at the end of one hot December day in 2002. Friends had invited us to stay with them at their beach house in Oubos and I’m sitting on the rocks just outside of their house.

Howick is a small town in the KwaZulu-Natal Midlands. The scenery in the KZN Midlands reminds one of England – rolling green hills, heavy fog and stately old homes. The Howick falls are quite beautiful and the area surrounding it consists of a little “rain”forest.
This photo was taken close to Christmas 2002. I’m posing with my sister and her husband.

Ostriches are funny birds. This one
we encountered on a farm in the KZN Midlands.
The likeness between the ostrich and M stems from an interest in the camera with its buttons and the glare, but it is very amusing, isn’t it? M is 11 months old.

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The angels along the way – Mama Gloria.

In this journey of ours we often meet people that seem to have been sent to us by God. In my life, and especially since L was born, I have encountered many of them. The minister of our church once put it very succinctly when he said that sometimes we needed to be “Jesus with a skin around” to people in need.

Today I would like to give tribute to one of these angels. She isn’t distinguished by her beauty or intelligence or the fact that she is rich – although she has all of these things in abundance if I think about it carefully. But to me she personifies the courage and strength of women who triumph over adversity all over the world.

Esperanz, for that is her name, her husband and two of her younger siblings fled Rwanda after the war more than ten years ago. Her older siblings and parents were all killed in this war.
“We couldn’t even bury our people” she said.” Their bodies were left on the streets to be carted away.”
I could see that this still caused her considerable anguish.

They fled to the Republic of the Congo where another war broke out. Destitute they spent three years in a refugee camp in Malawi. Eventually they decided that they had to create a better life for themselves. They wanted to go to a place where they would finally be safe. They chose South Africa for its relative political and financial stability in the Southern African Region. Also for the fact that, beside their native language they speak French and a smattering of English and that most of the countries in Southern Africa use Portugese as a lingua franca. South Africa uses English.

Not knowing more about South Africa other than that they didn’t want to move to KwaZulu-Natal because of the bloodthirsty Zulu people who live here, (my Zulu friends would probably have a good giggle over this) they chose Cape Town. I didn’t ask Esperanz how they managed to emigrate or how they survived at first. Knowing the shanty towns of my home country, I dread her answer.

But now things seem fine. She is employed as a nanny for my friend Izelle’s three children. It is her job to see that the kids get dropped off at school, get to their extramural activities and get home, fed and do homework. At four in the afternoon she leaves to pick up her own children from school and then goes home.

Soon after they arrived in South Africa, Esperanz’s young sister was diagnosed with a malignant brain tumor. She was hospitalized and her condition deteriorated steadily. For three years Esperanz visited her in the Red Cross Hospital in Cape Town to touch her and talk to her and to try and tempt her with home cooked food.
“I believed that she would be healed until the day that she died.”
She was thirteen years old.

In the meantime Esperanz’s own three kids were born. Two boys and finally, the little girl that she wanted so much. Now Elsperanz is, according to Rwandan culture not Esperanxz anymore, but Mama Gloria (Gloria’s mom). Her face lights up when she speaks of her children, like all mothers in the world

In Cape Town Esperanz drove me and the two boys to the Red Cross Children’s hospital in Izelle’s car so that L could have his milk scan done. She sat with me until she saw that I would be helped and that we would be okay. Then she took M back to Izelle’s house and entertained him until we finished our business at the hospital and she could bring him back to me.

Her sweet smile and loving manner stayed with me long after we left Cape Town. Her story will stay with me for a lifetime. And her faith, her faith I hold in my heart. For this is what sets her apart from the rest of the world.

Mama Gloria, I salute you.