It seems like life may have exploded over here! Being a home schooling mama I never realized how much work went into the kids being in school. Just when I think I figure our schedule out....it changes. So many pray and many more ask how we are doing. I normally say "great". Honestly if I told people how we are really doing, they probably would run away screaming, "I really did not want to know!" I am not terribly good at telling people face to face how things are going. Probably because of the well of tears that are right behind the eye lids. Or maybe it is because I feel they are tired of hearing yet another problem with our family. I also loathe hearing myself complain. I know many though want to know how they can help, how they can pray. So for you all, here is the update! :)
Brooke is continuing to do well physically. She has moments of exhaustion but is growing stronger! She loves school and is working really hard. I have been working with her teachers and principal on her IEP. It is definitely a learning curve for me. As time goes I feel more confident on what to ask and how to help. She loves music and art, telling me in detail everything she learns! Her swimming is improving and she will compete in her first meet in a few weeks!
Aidan is struggling. He really likes school. He is doing well academically but physically the days are draining. Aidan is only on half days right now. But even this is hard. His head hurts most days and his pain level has been very bad. He tries to control his feeling but sometimes the pain is just too much. He really needs to see the neurosurgeon. We do have an appointment with a pain doctor soon. He also is going to see a new geneticist in November. We are hoping for some answers and ways to deal/manage his pain.
I started working very part time again. I love the job and really enjoy working. Sadly though my body does not agree. Right now my job is getting the best of me and my family the worst. I somehow manage to make it through getting kids to school and to the job, but then I am done. Dinner is near impossible, and cleaning is well....not going well. Thankfully other people in the family pick up the slack as best as they can. Most days it is just very hard to hold my head up. I thought about wearing my collar but worry about perception (which I know is silly). I am really giving me all and trying to make life work.
I am seeing a new doc next week. I also see a Mast Cell specialist at the end of the month and a new geneticist in December. I am truly praying for some answers. One of my main issues right now is I can't take meds. Every time I am put on a new med to help symptoms, I have a severe allergic reaction. I am hoping the Mast Cell doc can help me figure this out. I also know I need a decompression surgery on my cerebellum. The neurosurgeon recommended this over a year ago. The whooshing sound and weird rushing in my head is only getting worse. I notice more and more my eye sight and balance are not what they used to be. It is also quite possible that the screws from my fusion are causing irritation and pain.
I was supposed to go and see a neurosurgeon in Virginia this month for a second opinion. He is one of the best in his field. Sadly I had to cancel. Just to see him was $600, and on top of it there is travel. The bad news is he is cutting way back on new patients. So by me not going now, means I will probably never be able to see him. This scares me. I worry what if he was the only one who could truly help? But I am trusting that God has this. Aidan and I do need to see our neurosurgeon in New York. I need to know how to best help Aidan, and figure out what both of us need done. He just moved into a new office, and there are some major hoops to jump through just to get an appointment. I have to take time to fill out all the paperwork and get it mailed. The thought of this is a bit exhausting and overwhelming. And even if we have appointments, how will we get there?
So so many of you have helped us over the years. I know our drama may seem never ending....and I understand those who have to move away from our lives. I assure you though we do not take one thing for granted. We are so grateful for those who help in love and prayers. A good friend of mine who suffers from similar conditions set up a gofundme account for our family. I felt so weird about this and still do. I wish I could figure out how to do this all on our own. The idea of any more travels for doctors or surgeries is crippling. And asking for help is also very hard! I will honestly tell you that any money that is donated is strictly for medical use. I have prayed and fought with myself over this for awhile. I am humbled and honored that my friend would take the time to do this in her own sickness. And I am beyond grateful for anyone who can help, even through prayer!