October 5th 2000, was a day of many emotions. I was finally holding my new baby girl, and the doctors said I never would! Half way through my pregnancy, scans detected a few abnormalities; bilateral talipes, increased nuchal fold, and a very small head circumference. None of which meant anything to me at the time.
I named my miracle baby Alexis (strong warrior), and looked forward to a normal, happy life with her. Her first 24hrs brought many questions. A significant high-pitched cat-like cry, and a lack of ability to suck, lead us to further investigations at a nearby intensive care unit, where we later discovered Alexis’ syndrome: “Cri du Chat”.
Finally at almost 2 weeks old and with a diagnosis, we were able to take our new baby home. Unsure of what lay ahead of us, we took each day as it came. Remarks like “She will never walk, she will never talk, and she may never even know who you are” weighed heavily on all of our minds.
The next 12 months were horrific. In and out of hospital and doctor clinics, a few minor operations (adenoids/tonsils removed, grommets), and many upper respiratory and ear infections. Lexy battled with constipation on a daily basis and could only tolerate a lactose free formula.
Alexis was also born with bilateral (meaning 2) talipes, severely deformed feet. With early intervention (from 3 weeks old), and a terrific therapist who specialized in talipes, we tackled the following 6 months with 2 weekly visits to a nearby city, slowly turning her feet each time. Both her feet were fitted with steel plates and a bar separating between. A very uncomfortable time for all. Engaging her feet into correct position, was painful for her on each visit.
To our amazement, Alexis seemed extremely responsive to ongoing Physical, Occupational and Speech Therapies. She was eagerly determined to conquer each challenge set for her. By the age of 10 months, she was sitting up unaided, and standing for lengthy amounts of time. Alexis began crawling by the age of 1, and by 2, decided she was going to walk. She has never looked back! She was toilet-trained shortly after, and continued to thrive at everything.
Today, at almost 11, Alexis walks (runs), talks, dresses and toilets herself and has become quite an independent little princess. She enjoys listening to music, singing (her style), looking through her books and adores bath time. She travels by bus to a nearby special school on a daily basis, and uses a simple Makaton sign language to communicate. Alexis does speak, but only in 5-6 word sentences. Those who know her, are able to understand and communicate effectively. Lexy is profoundly deaf in one ear, suffers from allergies, and requires ongoing dental work. Chewing her foods properly is still a very big task for her, and she has learnt to manage her drooling. There was a huge lack of sleep throughout early years (for her and for us), but since the age of 2½, she has taken medication to slow her hyperactivities, and help give her nights of undisturbed sleep.
Alexis is an extremely funny little scallywag. She shares her world with four sisters and a big brother. I am truly blessed to have her in my life. She has taught me strength I never knew I had. In earlier years I dwelt on the WHY’s and WHAT IF’s, but now focus on the CAN’s and DO’s. I believe that God would never have sent me such a challenge, if he doubted that I would make him proud. Thank-You for my gift from heaven, and God, you can be proud of your Alexis too! Xxx
Update on Alexis’s progress October 2011:
Alexis has just celebrated her eleventh birthday and is about to undergo some extensive dental treatment and be fitted with a hearing aid. She has now been diagnosed with sleep apnea and a possible future operation is in store to help correct her ongoing breathing problems. She now uses ventolin on a regular basis to help control her asthma and an upcoming visit to a nearby clinic in Brisbane, Queensland will soon be approached to discuss the use of botox injections to assist with her ongoing drooling! All in all, I have full faith that Alexis will adapt well in time with all of her new changes and will certainly document her progress for future reading!
Update on Alexis’s progress 30th April 2013:
Hi everyone. Its been some time since I updated Lexy’s profile, so there are lots of changes since my last entry.
Overall, for the last 12 months Alexis has been in almost perfect health, with just a little asthma. After being fitted with her first hearing aide she came along in leaps and bounds. Her speech made a significant leap forward. She is using 5-6 word sentences but she is so much clearer, anybody can pretty much communicate well with her. In the last 6 mths we did notice a change in her “good” ear. Through some extra visits it has now been diagnosed that her other ear is failing to. Later this week she will
be fitted with her second hearing aid.
This time last year, after a few medical visits to Brisbane, we came home with a better understanding of Lexy’s future. The dental work she needs won’t commence until around the age of 15, when her body has done its growing. It is then that will we also make the decision to realign her jaw. Which will correct her receding chin and give her better function of her mouth. It’s a big operation and I’m glad we have a couple of years to ponder over our decision.
We have had to start podiatry visits again as Alexis has one foot that’s not playing fair. Both her shoes have been built up in different places along the outside of each foot, one more heavily than the other. We are trialling this as first attack of the problem, in hope that this alone will be successful.\ She has been having regular visits with physio, to help strengthen her upper trunk and stretch out those naughty feet of hers. She comes home and happily carries out those stretches on her own with a short prompt of, “Exercises, Lex!”.
Unfortunately the education system continues to let her down with “speech and occupational therapists” the service is almost non existent. She is recognizing her second group of words now, after nailing her gold words only this year, and I’m very proud to announce that she has received her third award at school this year so far for various activities.
Self harming is our biggest hurdle right at this moment. I’m not sure whether her hormones are playing a role, but I think it would be accurate to say that in the last 6 months the issue may have doubled. We are trialling a weighted vest (to help calm her) and chew stick (to stop her from biting herself) at the moment. There is a small bit of success with both, but it’s early days. I’m sure she will eventually find them her best friends. I hope so anyway.
A “special needs” cheer leading group is about to start, and I’m yet to find out whether we are able to take Lexy along. I’d love her to find a little play friend outside of school, and what a perfect place to do so! I’ll keep you posted!
Overall, this girl of ours is traveling along nicely. She’s enjoying her spare time with her Daddy, and loves going for the long drive to see her Nanny. When she comes home to me after a weekend with Daddy, I say my to family “back to normal this arve “ because for me that’s what life is with Lex, normal. xxx