Mia has had numerous surgeries in her short life as do many kids with disabilities and endured many therapy sessions, but she has NEVER given up. Instead proving all the medical staff who told us she wont survive the survive and If she did she wouldn’t eat, move, breath by herself…well she did it all!
Mia’s run of luck came to an end when in October 2010 her shunt blocked. I still blame myself. I didn’t pick up the sign- puffy eyes…I was looking out for other signs like vomiting, tiredness etc but she didnt have them! We had just got 2 kittens in the house and i thought she might be allergic to them so didnt do anything about her eyes for a day or 2. My husband was home with her one day and he rang me at work saying she wasnt better- so I went home and took her to emergency- within 15 minutes of arriving my baby girl had stopped breathing in my arms. Nurses were running from everywhere, doctors calling for help, someone cutting her t shirt up the middle, and then me in tears i was handed her bracelet…that sent me off. I remember when my parents died I was given their wedding rings, to me this was a sign that Mia had gone!
She came back to me after what seemed like an hour. The doctors were on the phone to her Neurosurgeons in Adelaide and they were being talked through a procedure to relieve fluid from her brain. That was a success, we were then rushed to Darwin for surgery and then on to Adelaide for a few weeks where she would have a new shunt put in. ( you can read the whole story of that day in her blog)
BEFORE this event Mia was eating normally, trying new foods, drinking from her toddler sippy cup, was saying ‘mum’, learning to wave bye, bye, moving her limbs,would play peek-a-boo, grab and hold her toys, watch tv, could see her family etc…really living a normal life but with some limitations due to her disabilities.
AFTER that event Mia didn’t know who I was, couldn’t smile, talk, move her limbs, see her family, she couldn’t eat or drink. She had to learn it all over again.
NOW, Mia is smiling and laughing, recognises voices as we don’t know what she sees, she does look towards light, is tube fed, doesn’t talk or play peek-a-boo, doesnt reach out and play with toys, she is learning to grip again, has limited movement, but with daily therapy we have got some strength back, she cannot sit by herself without alot of support. This sounds very negative, but there are the little things like playing with her, singing and laughing together, seeing her look for a few seconds into my eyes and smiling – these are what I focus on…happy times, achievements for Mia. She loves the pool and music, and we give her as much of that as we can. There is one thing I do want for her though and that is to get her feeding tube out and taste again! While the NG tube is in Mia is continually gagging,at times when she is laughing so hard the tube comes out. This causes more visits to the hospital to have a new tube put in. This is very distressing and painful and the tape irritates her skin often causing blisters. The tube also has to be changed regularly every couple of months. At times it takes 3-4 hours for it to be changed and by the end Mia is very upset and distressed.
Mia has some needs which we cannot alone provide for. I would love for us to travel as a family places. WHen the other 3 girls play sport only one parent can go and the other stays home with MIa and Noah. We can’t all fit in our xtrail anymore and Mia is now needing a wheelchair. She is part of our family and I want her to go places with the other girls. It is heartbreaking to see her like this knowing what she was like before the shunt blockage. But I am thankful I still have her. I know I won’t get back the Mia I had before but I at least have Mia. I do not know what I would do without her, I tell her everynight not to leave me, as tears well in my eyes. Truth is I dont know how long I have my precious girl for, as with all children with disabilities, the time we have with them is precious and I want to do everything for her while I have her.
I know Mia will never walk, run etc but she can eat again and experience the joy of food. I know she would love those tastes again and after alot of research over the years I have decided that Graz in Austria is the place to go for this tube weaning to happen. The longer kids have tubes in for the harder it is for them to eat again, as they don t use their mouths. It is an addiction. And for children with disabilities the longer the tube is in…the earlier and higher the mortality rate!
Maybe by getting the tube out will also help her communicate again..I long to hear her say ‘mum’ again.
Please read Mia’s Blog : Mia’s life, our experiences with medical staff & learning to be a mum of a special needs child