Don't go into shock with 2 posts in a month ;) I figured it was time I gave a full update on my monkeys and their crazy medical happenings the past few months... since that was long overdue and so many of my faithful family and friends have continued to cover the 5 of us in prayers. It's been a wild and wearisome past few months to say the least. I will backtrack a bit... and start with Peyton for a change. A few months ago, Peyton started having consistent episodes of dizziness. I honestly am not a worry wart, so I told her she was fine and just to sit down for a bit and drink water if she felt dizzy. Well this mama probably should have worried a bit more... in November, Peyton went off to school one morning, complaining of feeling dizzy (and again I told her to chill and drink water)... only for me to get a call from the school a few hours later saying she "was sick" and I needed to come get her. I arrived at the school to get called into the office where the school admin told me to come sit down. She then explained... Peyton had been lining up after recess, and suddenly collapsed. When the teacher had called her name, she hadn't responded. She was only "out" for a few seconds, but when she "came to", she had started to vomit. She was dizzy and confused and still vomiting when I arrived to get her just a few minutes after the school called. They were concerned about a possible seizure. For some reason, I stayed fairly calm. I got her in the car and immediately called her neurologist. See she had 2 similar episodes (minus the puking) in the prior year, so we had already seen a neurologist and had an EEG (brain scan) done to check for seizures then. The neurologist was concerned and set an appointment to have another EEG done. So thus began another series of tests for my little monkey. The EEG came back with no visible abnormalities, so after spending an hour with her neurologist, he decided to refer her to a pediatric cardiologist. We're getting to know ALL of the Duke specialty departments now :) So I took Peyton to see the cardiologist. He was AWESOME! He ran more tests, and did an EKG (heart scan) right there in the office. He diagnosed Peyton with Vaso Depressor Syncope... the exact same heart condition both my mom and I have, which causes your blood pressure and heart rate to suddenly bottom out and cause you to get crazy dizzy, and often even black out. The blessing is that often if it's diagnosed in children this young, they will grow out of it by puberty when their hormones fully change, so I'm praying for that! Also, just having answers and knowing what to expect daily definitely helps both her and I deal with it! The down side is that in a child as young and small as she is, she can black out for up to 20 minutes at a time!!! CRAZY. Treatment wise, there's not much they can do for her. There's a med they can put her on, but the doctor and I met again together with Peyton this week, and we decided to wait until late spring to see if she really needs to go on it or if we can try to keep it at a manageable level with over hydration. See for this disease, hydration is KEY, so in the winter, with the cooler temps, it's a bit easier to stay hydrated, where this summer, it'll definitely be more challenging and she may experience black outs more frequently and for longer durations. So for now... we'll wait... drink lots (water that is...at least for her... lol!)... and pray she grows out of it quickly!
So my little dude Kai... the journey continues. He continues to be a fighter... a trooper... my little man who faces more challenges daily than anyone else I know. He now has an electric wheelchair that he can use at his own discretion when he feels so wobbly and fatigued that simple walking is too much of a challenge. He still has 3 therapies per week, and we are blessed with some of THE most incredible therapists who are constantly researching his disease and trying to keep things fun and challenging for my preteen who thinks everything these days is just "stupid". :) I've been incredibly blessed to have a super nurse who has been helping me with his needs after school as she has time (she's in nursing school so her time is limited, but I will take her help any time possible!). Kai is still trying to be very independent, but that's definitely becoming more and more of a daily challenge. Prayers are appreciated as I struggle to know how to best support and help my little man as there's so many questions that just cannot be answered as his disease is just too rare and unknown. He's an inspiration in his fight! Trust me, he's no angel... he's full blown preteen with the attitude and all... but it's his stubborn fight that's gotten him this far so for that I'm thankful. Prayers are appreciated for sure ... this journey is an incredibly emotional one for both Kai, his siblings, and myself. Kai knows fully that his body doesn't do what his brain tells it to do. That makes it incredibly tough. There's been a lot of tears shed by all. Kalia, Peyton and Thayne are incredibly perceptive, and they see their brother struggle, and it's not easy. They've watched him use the wheelchair at home more and more often, and they know the day is fast approaching where he'll need it at school too. I will keep some of his other struggles private as I would never want to embarrass my little man, but suffice to say they are not easy to deal with day in and day out. It's an exhausting journey. One that I know God chose me to walk thru and fight thru with my oldest son, and his siblings who have a whole different first hand view of life with special needs, but one that I question God often about as well. I have learned to be pretty raw and open, with the prayer that my journey can give another weary mama strength, just knowing someone else is out there who can relate and is in her corner. Or maybe another extra special child out there who needs to know they have a fellow fighter in their corner and climbing an uphill road too. It's a fight... a daily and hourly fight. But just like training for my Ironman... each hour makes you stronger. It's exhausting, and most days not pretty, but it's worth it ... because at the end of the day, every evening, I kneel by my kiddos beds and pray with and for them, and I hear their hearts as they share on their day, and I know I wouldn't have it any other way. I don't understand the "why" God chose me for this particular journey... but I do know that I have my 4 amazing monkeys to walk the road with, and I have a Heavenly Father who has given me strength for each hour of the journey, and I'm confident He will continue to do so.
As for Kalia and Thayne, praise God their health has been great, so that's a huge blessing!
Me... well we'll just suffice to say that autoimmune diseases (Systemic Lupus to be specific) don't like a lot of stress and a little bit of sleep, so it's been a bit of a struggle with pain management lately to say the least, but I'm still able to move and groove as needed with my monkeys and work and daily routine, so I can't complain. :)
So in a nutshell... prayers appreciated especially for my little dude Kai, and for his siblings and I as we continue to process his struggles along side of him and adjust daily to the ever present needs of our crazy schedule called life!
