We have been back to see the neuro-surgeon over the last few weeks quite a few times. He has had a post-op MRI as well. Things just aren't any better than they were before the first surgery. He is waking up multiple times in the middle of the night crying and asking for his valium and oxycodone...this coming from a kid I have to chase around the house to give him medication on a regular basis. He is struggling quite a bit at school as well. I was at North School twice within an hour yesterday. Once to pick up Brenna as she wasn't feeling well, and then again to get Sean who just couldn't make it through the day.
We met with Sean's surgeon again on Monday and have decided that it is time to bite the bullet and go ahead and do a second surgery. This time he will actually have to do a duraplasty, which means his brain will be open and exposed while the doctor sews in a synthetic patch to help brain expand. It may not be as long a surgery since most of the bone has already been removed, but it will be more complex and there is more risk involved anytime the brain is manipulated. I got the call this morning and his surgery will be next Friday, October 22. His Pre-Op is scheduled for the day before.
I am so sick of all of this. Brain surgery twice in 8 weeks for one child and then almost losing another? Is this really happening? I know that it is. I think the thing that is hitting me the hardest is that I feel completely numb. I have shut off so many feelings so that nothing can hurt anymore. It is the oddest feeling in the world.
I am now trying to figure out how to manage having Sean in the hospital and be there 100% for him because he so deserves it, but also manage Brigitte's care....which nobody except me can do. On top of that Jake has his Mity Mite Superbowl the next day on the 23rd. It's just not fair. I cannot be in three places at once and so need to be. Actually, four places because Brenna needs her mommy too. How do you do this? I think there should be an unwritten rule somewhere that if you are blessed enough to be given the gift of an unhealthy child/children that you shouldn't have to worry about all the other stuff and it will just be taken care of! Yes, that was not a misprint, I do feel very blessed to have been given Brigitte and Sean. They are amazing children that have taught me what life is all about. They are MY teachers....not the other way around. I do not pretend to think this is an easy life, and there are many, many people who couldn't handle 1/10th of what we do. BUT, I really do know what matters.
My children are bringing together a community and teaching them what life is all about too. The Londonderry Wildcats,Kim Payson, and so many others have stepped forward and are helping to fill the void and take care of things that Bryan and I can't physically and financially. My children are leaving their footprints on so many people's hearts, it is truly heartwarming.
So although medically things are always in a tailspin in this house, we are getting through it with the love of family, friends and an entire community that is rallying around us. Sunday, Shory's Mexican Roadhouse in Manchester and Salem dontated $1000.00 from a fair share event to help defray some costs associated with the mini-makeover being done at the house. On Monday, Lenny and Lisa Santosuosso of Santosuosso and Son's Construction had a crew out to begin work to separate the master bedroom into two rooms that will now be for Brenna and Brigitte. Brigitte slept in her own room for the very first time in 4 years. It was bittersweet for me, but truly amazing for her. She thinks she is such a big girl now. Yesterday, Derek Wagner of Wagner Electric came out to do some electrical work in the rooms and hallway. He had read about our family and donated all of his time yesterday and completed all the work for free. Bill Mower a local plumber and friend of a friend has been over to evaluate some plumbing work that has been needed got all of his supplies donated and is going to start soon as well. Eric Buck of Pollock Land Planning was also out yesterday and has a grand plan of constructing a new deck and patio area that is safe for Brigitte to finally be able to play outside. I also found out that Steve Babine from Landscape FX will be starting a fall cleanup next week. From what I am hearing there are many other people that have stepped up to help and are committed to getting this project completed. I would urge anyone in the Londonderry area that needs to have anything done in their house, yard, etc. to use these companies. There is something to be said of people who donate their own time and materials to do good for others. I know that none of them want or expect any thanks and are doing what they feel is right in their hearts, but wouldn't it be nice to reward them with patronage for a job well done!!
I am headed to Boston with Brigitte this afternoon for a few appointments. She is seeing her GI doctor and the nutritionist. We are still having major issues with her intestines and has lost about a pound in the last week. Back to Boston again tomorrow for her follow-up with her General Surgeon as well.
I will continue to keep you all posted with news on Sean, Brigitte, and of course the house. Thank you as always for keeping our family in your thoughts and prayers. We feel it and appreciate it.
If you are looking for more information as to how you can help with the makeover, please feel free to contact Kim Payson at bkpayson@hotmail.com My understanding is that the need is for materials right now. If you know anyone who can help, it is much appreciated!!
It takes a village to raise a child~~~~African Proverb
Much Love Always,
No comments:
Post a Comment