Jessica was born with Pierre Robin Sequence a cleft palate which was repaired on the 17th September 2010. as well as Cerebro Costa Mandibular Syndrome. She also has Congenital Scoliosis. Not only this she also had a melioration of the bowl which has since been corrected via surgery in 2010. Jessica has home suction which helps keep most infections at bay if not then under control keeping her out of hospital more. Jessica is awaiting to find out what if anything can be done with regards to her scoliosis. You see its not as easy as you might assume. Due to the CCM gaps in her ribs as well as her displaced ribs the more conventional methods of treatment cannot be given leaving very few options at this time. Jessica has also got conductive hearing loss and finally after a few years of trying and gentle pushing she now proudly wears a hearing aid. She will be given the option in a few years to switch her current aid to a BaHa aid just like her brother Tom. We hope to have answers to some very difficult questions in the early part of the new year (2012). Jessica however does not find all these hospital trips easy in fact she finds them stressful upsetting and has on several occasions actually attacked her doctors consultants and nurses. Something of which I totally understand. Like with Tom I have always tried to make each hospital visit as stress free as possible I've always tried to turn them into something positive and I have always kept my personal fear away from my kids. For some reason Jessica simply dislikes anybody from coming near her if related to the medical world. We have now bought her her own medical bag with all the trimmings me her Chris and Tom now every day play hospitals and patients. We get the dolls out we all take it in turns to be the doctor or nurse and the patient. We are hoping by doing this role play then taking it with us to Jessica's next appointment she will be a little less stressed and less likely to attack. We are hoping in time as she gets older she will get better and more trusting. I guess time will tell.
To date Jessica has conquered more then every dreamed. Jessica has beaten odds in more ways than you can imagine she has completed mile stones some before her age and she continues to do so. We don't know what the outcome for Jessica will be but what we do know is we have a fighter and feisty one at that too. What we do know is we are very proud of our little girl. Like Tom she is a happy cheeky little madam. Unlike Tom who is quite and placid Jessica is loud and feisty. She wants to do what everybody else is doing she hates to miss out. Jessica loves to be outdoors come rain or shine she loves to play with a ball her favourite game is throwing it towards the basketball hoop. Jessica loves to bounce so our trampoline was a huge hit. Jessica like tom loves to build the knock it all down, she has started to take to drawing. Yes I've already had to tell Jessica not to draw on anything other than paper this was done when I discovered her fancy artwork all over our TV stand and one of our speakers as well has the radiator. Needless to say she has been warned. Jessica's best friend is chicken and meow meow as well as crackers and ginger the cats. Jessica's favourite pass time is a walk along the duck pond feeding them then sausage and chips from the chippy. Jessica loves books especially the nursery rhymes. Jessica has just started getting into the whole dressing up thing and has several items for dressing up. Her favourite is the Tinkerbell dress wand and tiara that nanny bought her recently. Jessica loves her brothers so much and she really does look up to Tom and bosses Charlie around terribly. Jessica is cheeky to and loves to wind her brothers up.
Jessica completed the last year of nursery before starting Reception. Jessica very quickly settled and made an enormous amount of progress. She had learnt how to spell and write her full name count from 0-20 and learnt her ABC's as well as progress quickly with the beginning stages of reading all before school closed for Christmas 2014. Jessica took part in many new thing enjoyed all school trips as well as develop a love for P.E she is a bright and very popular little Madame who has excelled not to mention defy her medical team by turning 5 years old. Jessica had a fantastic 2015 has continued to grow and blossom and with just a little over 8 weeks to go before she turns 6 as well as doing just as good in year 1 as she did in Reception.
Jessica's health has improved greatly as a result of going onto Bi-PaP by night. She began this in January 2014 and today continues. With every night she grows she gets stronger and therefor suffers less with basic illness such as a cold. Jessica hasn't spent a night in hospital due to illness since and in fact May of this year 2015 her Orthopaedic team GOSH were shocked and impressed with the changes to her spine and chest cavity in general. We will find out this month (November 2015) if theses positive changes have continued.
For now Jessica is happy healthy and as full of life with buckets full of determination as shes ever been. Nothing and no one holds this little BIG madame back.
UPDATE
Okay so Jessica didn't have the best start to this year 2016. We started to notice a lot of changes to her body and her peronality. She was not longer the happy go lucky full of the joys of spring with a willingness to not only survive but to live. After a lot of talking and gut feeling I made one call to my go to (HEAD OF OUR MEDICAL TEAM) and with in a few days the first round of testing began. Full MOT the works. Jessica had finally our grown her bipap nose piece so swiftly changed and upgraded. Home sleep study then 4 weeks later over night hospital stay to complete full sleep study which then allowed pressure settings to be changed. All that is left is to see our orthodontic consultant at GOSH. We will be asking for fresh up to date MRI and CT scans and X-Rays as there have been a sufficiently changes and Jessica is complaining of some pain a little more than normal. We are not expecting good news in July gut tells me we are heading into a new era one that we hoped and prayed we could avoid for at least a few more years. I guess there's not much more I can say until after our check up in July. For now there has been improvements to her respiratory issues and her orthodontic issues as for her hearing she's amazed me with how proud she is of her hearing aid.
Someone made it to there 7th birthday. A day we dare not dream about. Well done madame you've done yourself proud. Keep throwing the rule book away there much more here for you to learn explore and enjoy.
