Giovanni's World!

Me and my boo at Nkrumah Ward 37 Hospital Yup, it really was a storm in a tea cup 8th September. With the birdge in East Legon being closed due to Ghana Water Company doing some works there. Hot afternoon, I took the day off in search of a new nanny since nanny number 4 finally gave up and left (I'm even happy she did). Came home and the little man was just not feeling great, had to rush him to 37 hospital in the traffic! That day, the traffic was exceptional because the tunnel was closed. Those in Ghana will remember it well, the whole of Accra was at a hault and people were stuck in traffic for a minimu of three hours.  Hmm anyway and so we 'rushed' to the hospital and for some crazy inexplicable reason, people decided to block us hmm: the people that blocked me that day as we beeped through the traffic, I've prayed for them and forgiven them for their selfish ways.  So, we've been falling sick, been admitted twice to 37 Hospital in two weeks and been sick...

I'm singing a redemption song so that my Father in Heaven will have mercy on Giovanni. It's hard as a parent to make decisions that will affect him forever, and if anything goes wrong I will be responsible. So far no medication has been able to control Giovanni's infantile spasms and so the doctor's have moved onto the next level. That level where the drug is super dangerous yet we have absolutely no choice but to use it? Yup we have finally reached there and it hurts. It hurts that I'm going to give Giovanni medication that may possibly impair his vision after just a few weeks of using it (no I'm not lying I will post the link and you can check it out yourself) however I've been told by doctors it will definitely stop the spasms. Now how do you leave a decision like that in my hands? I wish the world knew the love I have for my son, I would lick the ground for him. And yes these are the exact moments when I ask God why and if I have done something wrong he...

I thought me lying in a public hospital and having surgery was my worst nightmare until Giovanni got very sick and we had to go to 37 Hospital. Giovanni hadn't been feeling well all weekend. In fact I thought he was tired from the party we went to on Saturday. Sunday he was too quiet and not his usual self. Monday he had a serious seizure that lasted a total of 20mins (my poor gio) worried as I was I informed the doctor and gave him his medication. Tuesday afternoon he had another long severe seizure but this time developed a high temperature. No amount of sponging helped. And even the suppository didn't bring the temperature down. Our usual pediatricians funny enough were both outside the country. So we had no choice but to go to a private clinic in East Legon. We saw a doctor at Acacia Clinic (Thanks to an amazing friend Vanessa who helped us get in touch with him), he was very helpful and referred us to 37 hospital. What I'm about to tell you will begin as a marathon b...

So here comes the issue with nannies and nurses for children with special needs. It's a huge headache for us. To find someone who is literate but at the same will play with your child and stimulate his development. And of course I need someone who will show him a lot of love. It's really hard to get a correct nanny these days and this has become a challenge now to mothers in general so how much more a mum who has a special needs child. As I wrote this piece last week I was angry and very hot and bothered. Why does our society believe money grows on trees?  So in my case, Giovanni requires a nurse or at least a caregiver (someone with some healthcare knowledge) to take care of him while I'm at work. I've been dealing with a number of agencies. Having a nanny can cost between 300 and 600 Ghana cedis a month but a nurse/caregiver is much more. My child doesn't run around, yes he would need to be cleaned, fed and played with like all other babies. The only difference ...

1st August, marks the day when a group of amazing friends led by Yaa decided to raise money towards Giovanni's treatment through a walk. We are forever grateful for people like these with such warm and big hearts. It showed me that people really do care when you reach out to them and people want to help. We would be nothing today if it hadn't been for all those people (family friends and others) that came out to support us that day and the money has gone a long way in Giovanni's treatment. Medical treatment for long term illnesses can be expenisive and therapy which helps Giovanni so much can also be super expensive. I came across an announcement today of a training Programme for parents with special needs kids: it's a one day workshop that includes snack, lunch and a certificate for an amount of 250 Ghana Cedis for the day. Now in Ghana, this is expensive for a programme that will only last a few hours and that has more to do with your daily living experien...

When a mother gives birth, the new born baby is a joy to see and it's a blessing to have kids. Having a special needs child I believe is more than a blessing, it's a privilege, they are God sent. Just like everybody else, but even more so, they are here for a purpose and a specific calling: to influence the lives of others, to touch people and in a different way. They are truly, God's jewels. God's special gifts. They tend to be very fragile both emotionally and physically. Which means if they fall sick, it can be very serious. Giovanni has been sick for the passed few weeks. You see it's very different when a special needs child falls sick. They are more fragile and sometimes more prone to infection, this means when Giovanni gets sick, he gets really really sick and trust me it isn't great. I wish people would just wash their hands before touching babies? I mean you've come to visit Giovanni and you're from church, you have shaken a few ha...

At 3 days old, Giovanni was diagnosed with two rare conditions: microcephaly and craniosynostosis after a CT scan. His sutures appeared closed and his head was abnormally small according to the doctors. And so this is where our journey began, of seeing doctor after doctor, specialist after specialist, trying to find exactly what was wrong with my baba. After seeing several doctors in Ghana, who confirmed what the CT scan showed, we raised money and flew to South Africa thinking we were going to do surgery to open up his skull, only to be told by the doctor something different. Something we weren't expecting at all. At 10 weeks old Giovanni had a MRI scan in Cape Town, South Africa and the doctor told us mysteriously that Giovanni did NOT have craniosynostis like we had thought but confirmed it would be more of a neurological problem that couldn't be corrected by surgery. After the trip to Cape Town, we came back to Ghana even more baffled about Giovanni. I knew something...