It's been quite some time since I ventured over here and made a post. Honestly, life has been more than hectic and busier than you could imagine! As for me, I am doing fairly well! I haven't had a bad syncope episode in a long time now, although I do occasionally have brief blackouts but they are far between. I am able to drive now since my symptoms have subsided so much. I still have to rest my body a LOT in order to keep symptoms under control. I still try and keep my stress levels as low a I can but with 3 kid who face health issues of late that has proven harder and harder. I find myself losing sleep with my thoughts going everywhere. It's the quiet of the night that gets to me. Those moments when I am too tired to watch tv or do anything else, but as soon as I roll over to sleep my mind seems to wake up and all the what-ifs and such become overwhelming. For the last 6 1/2 years my middle child has had GI issues. Her diagnosis, which isn't even really a diagnosis just stating the problem, is chronic constipation or obstipation. The last 2 1/2 years have been very hard. She had surgery last June for a biopsy of her colon and then another surgery in November to place a Mic-Key button in her colon, a cecostomy. She has had multiple hospital admissions, trips to the hospital for X-Rays, to see her specialists, her surgeons, etc. Then she began having anxiety that was through the roof and so we started seeing someone for that along with depression because her cecostomy has not worked like the GI thought it would work. She has had to switch from a regular GI to a colorectal clinic so that she sees a specialist GI and Surgeon each visit and it allows us to have direct contact with them regarding all issues. We are brand new on that end of things but it seems to be a better fit. We get much more information on how to make this cecostomy work for her instead of against her. In less than 2 weeks time she and I will make the trip to Atlanta for her to be admitted and have a full colonic motility study. We are praying this gives us answers as to what is the cause of the constipation that has been a grueling battle for our sweet little girl. My oldest daughter spent much of last year in weekly physical therapy. She had an issue arise with her muscles and joints in her legs. Her muscles on the front were extremely weak while the muscles on the back were overly tight. She couldn't walk with her foot flat, instead it would roll a bit, causing all kinds of problems. She now wears an orthotic insert in her shoes that help raise her arch to keep that from happening. She was also diagnosed with selective mutism and severe social anxiety. I knew she was shy, but it had gotten really bad so I sought help. She is doing much better in regards to being able to speak again! She wa getting weakly therapy and daily meds to help with this. As we have gotten this under control she's diagnosed with ADHD. So we started meds for that and this week I noticed that perhaps they are working! She was much more focused and able to retain her math facts unlike ever before! We homeschool and I had tried everything! Perhaps all along she needed something for ADHD but since I had nothing to compare her to I just didn't know. And now my little one, my 2 year old, has had a rash come up for the last month now. He's seen his pediatricians at least 5 times in the last month. We were told one thing in the beginning and treated for that. It didn't help. He tested positive for strep the second week so we were told maybe it was a strep rash. Tried oral steroids that mildly helped. Ended up back at peds and it they decided that it wasn't strep but likely an allergy. Finally he was referred to an allergist because it got so bad. She wasn't 100% sure of what it was either. He only tested positive to be allergic to grass. She felt maybe it was an eczema rash that just went wild. So we came home with a plan. For a week and a half I saw improvement and then it started just coming back. We know it wasn't something in the home because we were on our 3rd day of vacationing when it came back so entirely new environment. So back to the allergist for the blood work she suggested. In the meantime he had to go back to the pediatrician because of pain in his privates. Two ped trips regarding that and a trip to the hospital for an ultrasound that came back clear, and the pediatrician thought maybe related to the rash. The allergist didn't think so but conferred with the head of pediatric urology and he wants him to be referred to him. Bladder spasms or constipation seems the likely culprit. I really hope it isn't constipation as we have already had a near 7 year battle of that with my daughter and I know how bad it can get. Oh and he also had a dental surgery about a month after my daughters surgery and we learned he had reflux causing dental decay! Never even thought he might have it!
Needless to say it sometimes feels like a nursing home around here! There are meds to give in the morning, meds to prep and give in the afternoon, and meds before bedtime. Each week typically holds at least 3 appointments that require about a 20-30 minute drive one way. Two of the locations are between 30 and 45 minutes one way. And they are all interstate travel so if there is a wreck, well just be prepared to wait or learn your way around things!
I'm not complaining at all though. I say all this to say how blessed I am. Four years ago I could barely do anything! I had my son, August will be 3 years, and it's almost like my body got better in most respects. I can even play piano again! Like I said, I still have symptoms of dysautonomia but they are mild most of the time and I am able to manage without meds! Lots of hydration and lots of rest when I can find it. I am blessed that I am well enough to take care of my children's needs! Every day I thank God for them and for helping me be well enough to be the mom, taxi driver, cook, nurse, teacher, and friend they need me to be. They are my inspiration to want to be better, do better, and live better!
If you are a believer in prayer and know that God is our healer, please remember my children in your prayers! They are fantastic kids and have all had quite a rough go of it in the last couple years and then some. Between the three of them we have had 7 surgeries in about 5 years time. More specialists and Dr visits than I can even count. More hospitalizations than I can remember. Xrays, tests, blood work, medication trials, etc and the list just keeps growing. But God is faithful and He has supplied ALL my needs! He has directed our paths to great and caring Dr's. that go above and beyond to help my kids! He has given me strength and health so that I can be well enough to take care of my children. And I know He can provide complete healing and restoration to their little bodies! I am still trusting and believing! Thanks for reading. Thanks for praying for my family. Have a blessed and wonderful day!
