The past few months have done a flip on us. We had a little over a month when we first moved where I felt truly great. It was a blessing. I am back to struggling with several health issues. As of right now I am not sure what is causing what. I still have the awful head pain at the base of my skull which increases whenever I move. I have a rushing in my head whenever I change positions. This makes me light-headed and ill. I also have a whooshing sound in my head. Almost like my head is filled with water or I am underwater. This is not something that comes and goes...it is constant. So sadly it is quite maddening. Of course I am still dealing with joint issues but these are minor in comparison. I am scheduled for a sleep study because when I roll over in bed my throat begins to close up. This makes breathing hard. My neurosurgeon also wants new MRI's and a lumbar puncture. I have several appointments with different docs over the next few months. I will be seeing a cardiologist, neurosurgeon, sleep specialist and mast cell specialist.
Moving closer to everything has been huge though!! Being able to get to places faster makes life so much easier. I do spend a good deal of my day in bed, resting. It is very hard to hold my head up. I have been told I can't give up. Just to clarify: I am not giving up or do I ever plan to. But sometimes my fighting is simply to feed my family dinner or do the laundry. Our family does not have the ability or resources to go to one doc after another. I will be seeing these docs in the fall to try to create a game plan. I have learned though part of my fighting may be to just find a balance. This balance to others may seem like giving up. It is not. It is learning to function in the body God gave me. I am not convinced one more surgery will help...or one more procedure. I am convinced my family needs me and I need them.
Aidan and Brooke both had MRI's done in June. The neurosurgeon read them and they are both abnormal. Both have increased Cranial Instability. They have a retroflexed odontoid (which we did know). And their GO scores (for those who care about this ;) ) are Brooke- 9.4 and Aidan- 9.8. And a CXA of Brooke- 128 and Aidan- 130. Thankfully Brooke's herniation is stable and Aidan's has only changed slightly. All of this means they most probably will need fusions. They could be soon but the plan is to wait as long as humanly possible. This is why both of them still have bad headaches. Brooke will continue to wear her collar and Aidan will be getting one.
Both kids are starting school. My mama heart is broken and excited all at the same time! I am tearful over sending them away from me. But hopeful and excited for the wonderful, new opportunities they will have! I am also beyond excited for the extra help the schools can offer. As of now we know Brooke has a form of dyslexia and aphasia. Aidan was tested last Wednesday. Although I have not received report yet, they believed he also had dyslexia. I also learned while sitting listening to the doctors, dyslexia is probably why I struggled with reading. Due to Brooke's health actually being a little better than Aidan's, she will start school on a full day. Aidan will most likely start at half days. He will have his core subjects with a teacher one on one here at the house. He will then go into school for the other subjects. Hopefully by the second part of the year, he will be ready for full days. I can't say enough how amazing the school district has been!!! I also can't say enough about the NeuroDevelopmental Center at Akron Children's! Both have bent over backwards to help me understand all this and find a way to help the kids.
We have seen so much change for us over the years. The constant is....we turn around to blessings always! Friends who drop off dinner just to help out. Family who transports us to doc visits and the store when we can't. Church who prays faithfully for healing or at least acceptance to move forward. A van gifted to us and keeps on running even when I think it will not. A job that is far but steady. Doctors who may not know the answers but stick with us. Friends who watch the kids for free so we can go to appointments. A once a week coffee with a friend so I do not have to pay for psychological help. A hubby who stays and provides even when the burdens seem never-ending. A country where I can live in a house with heat and air. So thank you! Where ever you fit in this list...thank you!!! You are a blessing to our fam!!
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