every special milestone in her life then we are gonnae be needing a lot of Champers lol.
Anyway after returning home in October Chiara has kept extremely well. It has been an emotional rollercoaster for all of us. I am finding the constant travelling back and forth 2 to 3 times a week to Yorkhill very stressful. I miss working terrible although I love spending loads of time with Chiara albeit she is extremely hard work. On the 8th November we were given the fantastic news that Chiara's hearing levels had went from 80 down to 30/40 which is level of conversation so currently Chiara has no need to wear hearing aids. As a family we know she can hear everything we are saying and she responds to all noise we make. She is making great progress with her teacher and currently she is not developmentally behind schedule. She crawls around like a normal child, she can pull herself up at furniture and walk around or walk around with her walker.
Chiara still has no need for night time ventilation but on a recent visit to hospital she has another sleep study carried out which showed that her results weren't as good as the last. A lot of Chiara's problems are being put down to the fact that she is carrying so much extra weight. She has gained 20% of her body weight in 2 months. Unfortunately this has been down to the steroids so currently she is on the her last reduction and hopefully when these are completely finished she will lose some weight and hopefully her breathing etc will return to normal. It is not a huge problem but you can tell she gets out of breath quicker than normal because of the extra weight.
Chiara has also developed a lot of excessive body hair over her shoulder and back, this is a side effect of her Cyclosporin which is the drug to stop rejection so its a small price to pay although not nice to look at on your wee baby. We have been told this will disappear once the drug is finished and hopefully this will be in a few months.
A few weeks ago Chiara was admitted to hospital due to her contracting what was thought to be hand, foot and mouth which put her off her food and fluid. I myself didn't cope with this admission too well and went into complete melt down and Richard had to come and stay with her in the hospital. My feelings at that time were that my whole life now was Chiara, my whole day was Chiara, my boys no longer had a mother with them since Chiara was born, my thoughts were that the boys gained a sister and lost a mother. I know Chiara didn't ask to be born the way she was but sometimes the pressure and strain can just get so much that you forget who you actually are. Most of my days are spent travelling to and from appointments and the rest of my family are left to bring themselves up. I hate the thought that one day I will wake up and my boys will be all grown up and I will have missed out on all those years of their lives. I know many of you reading this wont understand what it is like and possibly even think I am selfish for thinking feeling like this but having a child with disabilities no matter how small or how huge the pressure and strain it puts on a family is immense. I am now in the process of getting shared care hopefully for Chiara with a closer hospital and she is having home visits to have her bloods checked so slowly we are returning to a normal family life and my hope is that next year I will be able to obtain some work.
We have been through so many highs and lows this year that I now look forward to Christmas with my family and hope that next year is a better year for all of us.
Chiara has her spinal appointment in January when we will probably be told when she will receive her spinal correction. Hopefully the last surgery for a while.
On Saturday I am attending a charity disco, the proceeds of which are being donated to Hurlers. I am so grateful to everyone who has shown support to Chiara and the MPS society.
We were asked to be included in a television programme to be aired in December regarding Chiara's story but unfortunately in the last week we have been told that she is no longer going to be appearing. I have just finished writing an article about Chiara's story which will appear in the next issue of the MPS magazine so hopefully this will bring hope and smiles to a lot of peoples faces.
Merry Christmas everyone x
What a roller coaster ride indeed. Well done for getting this far and I can totally understand what you are talking about with your boys. All your 3 children will be needing their mum equally and it's so hard to split your time when you have to travel to Yorkhill so much. Your posts are fantastic and right from the heart. Wishing you all a wonderful Christmas, nice to see your tree is up and good luck in January. Love Karen xx
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