This week, I am introducing you to Caroline and Maxwell.
We haven’t had the chance to meet but I sure hope to have the opportunity to one day.
Hi Caroline, Can you tell me about your family?
Answer: Me and my husband live in London, and we have 18 month old Maxwell who, when he was born, had some complications and was admitted to the special care unit. Maxwell had low blood sugar and breathing difficulties. He was diagnosed with a floppy larynx on day 2. We were in the hospital for a week but it felt like a lifetime. I had complications following an emergency c section and the whole experience was traumatic.
Tell me more about Maxwell
Answer: When we got home we struggled to get over our ordeal and was worried about Maxwell as he still had breathing issues. He couldn’t lay on his back for more than a few seconds so changing him was difficult. We would put him to sleep on his side. Maxwell had some mid line issues so further investigations were to take place. The paediatrician ordered genetic testing but didn’t really explain why. At 5 weeks old Maxwell got ill and was admitted to hospital again with pneumonia. On our second day in the hospital the paediatrician came to tell us hat he had received the test results and that was when Maxwell was diagnosed with CdC. We were devastated and to this day our biggest fear has always been that Maxwell may not grow up mentally and may always be a child. All your hopes and dreams for your child go out the window and you just hope for a smile, some form of communication, a laugh….. We have been very lucky with Maxwell. He is doing so well and is such a happy boy. Always smiling and laughing and his fine motor skills are fantastic. He cannot stand or crawl but he bum shuffles and understands so much more than he can communicate back.
Tell me about therapies
Answer: We have weekly appointments with portage and physio along with regular checks for speech and language, endocrine and paediatricians. It’s hard going but all the hard work we put in is worth it.
Tell me a success story.
Answer: Maxwell signed for sleep recently and is starting to try to talk. We are so proud of him.
Here is Maxwell smiling at Christmas.
Thank you Caroline.
Maxwell is really beautiful, I hope we have a chance to meet one day.