So as stated we've had a few appointments throughout November starting with Allen's Croft Children's Centre. I had my reservations because of previous experiences, however I was so glad we went as it turned out to be a worth while and productive appointment. After chatting to our paediatrician who by the way was very nice someone genuine and there for all the right reasons we began planning a tailored made care plan both for the present as well as the future one that can be adapted as when needed. All in all a good present appointment.
Jessica has had her flu jab followed by a cold hence the quietness and delayed updates.
Next was the results from her MRI, CT scans and latest X-RAY.
So this is whats been said...Jessica's curve in her spine has increased by how much or by what rate it is still unclear. As a result Jessica's left lung is now being compromised and is now at risk. Basically as the spine curves and twists its pulling the chest wall inwards preventing the lung from expanding and functioning correctly. The consultant has said whilst her spine is a problem and needs corrective surgery its the lung and the stress and pressure put onto the left chess wall is the main concern so much so they feel that if Jessica stands any chance they need to act sooner rather than later. They have put Jessica to the top of the list and plan to corrective surgery at the beginning of the new year.
The surgery that has been offered is -
GROWING RODS - This is basically a metal rod which can be attach from either the top of the spine or from the bottom!
VEPTR - This is basically a clamped device that can be attached vertically they can be put onto her rib cage hips spine etc...
The consultant feels that the growing rods would benefit Jessica best this is because Jessica has very large gaps in her ribs she also has displaced ribs meaning that the VEPTR device might not be able to be used as she might not have enough bone for the device to be clamped on it might be that her bone isn't as strong as it should be meaning they could break or crumble once the device is clamped.
The consultant has said though they feel they should be prepared for both types of procedures and it might be they need to use do both procedures to give Jessica the best chance.
Like with anything there are no guarantees that either procedure will work they will only really know what they can do if they can do anything once they take her into theatre and open her up.
What they have said is it is unlikely there will be any other options available to Jessica. As you can imagine we her parents we her family hope that one of the above will work.
So after reading the above update how would you respond?
Do you say thank god its not unbearable news...."We can't offer you hope",
Do you thank god for the small amount of hope, that they have said "we have 2 options"
I'll tell you how I feel right now...I feel like I'm stuck in no mans land I feel I dare not hang onto that glimmer of hope for fear of disappointment. I feel scared of the ifs buts and maybes...I'm struggling to find the strength to cope to stay strong and to hold onto whats in front of me. I'm struggling to really know what it is I'm suppose to do say or react. Jessica is such a live wire she's funny smart and willing. She is having a ball she loves her life and I'm loving it with her we all are. Its hard to imagine her any other way its hard to think all this can change at a flip of a coin. The things she will have to learn to do again should the surgery work the things we will have to prepare should the surgery not work etc....Then there is Tom! How will he cope? will he cope? what if we miss something or forget? and so on....As you can see the news is still quite fresh and I'm still trying to process everything that and the fact we are yet to have our meeting where we discuss the surgeries it'll be our chance to ask further questions our chance to find out about the stages to rehabilitation process etc...
For now we are near to Christmas and of course to both Tom and Jessica's birthdays and we cannot wait. We have already put the tree up decorated it and tonight the kids got to start the count down to Xmas via there advent calender. Pressies are almost complete and the food shopping will begin end of next week. For now we are putting the new year stress to one side folding it up putting it into our pockets as there isn't much we can do this side of the new year.
My Baby Girl
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