Tuesday, February 4, 2014

Better day

I'm going to start this post with a little blog education. This blog is intended just as the name implies...A Day in the Life of Reagan Leigh. It's a journal that chronicles Reagan's day to day life. It's a tool for myself and others to use to see how she responded to certain medications, when certain symptoms first appeared, when procedures occurred. I can't tell you how many times I've gone back to the blog to look up a date of a procedure or to map out good/bad days (which we just did for her neurologist). I've also been told by many parents how helpful it was for them to see how Reagan responded to a certain medication or therapy (in helping them look for symptoms in their own child or decide on which medication to try). I also write it for our friends and family. Many of whom are long distance and want to know how Reagan is doing and enjoy seeing new pictures of her and her brother. And lastly, to vent. There are days that it's unbearable to watch my child suffer one second longer and on those days I can express my frustration on the blog and ask for prayers! But the blog is not here for me to pretend that everything is always hunkey dorey and that we are this picture perfect family (that is what Facebook is for)!! So, for better or for worse, this is A Day in the Life of Reagan Leigh! On to my girl's day...She had a great day today! She slept like a rock after the clonidine last night and didn't wake up until we had to get her dressed for her neurology appt! Thankfully, when she woke up she was all smiles and no longer nauseous (seriously, thank God)! She was super sweet and so well behaved for her appt...wish I could say the same for her brother! Not a lot to report from the appt. Mike helped me make a bar chart that showed good/bad days, sleep, Lyrica dosage. Needless to say, there wasn't much of a change. There are definite highs and lows (that come in waves), but there doesn't appear to be much of a difference since adding the Lyrica. So...we're taking her off of it (it was a slow wean on, and it will be a slow wean off). Meanwhile, we're waiting to discuss any future changes until we get the results back from the endoscopy/pH impedence study/ sigmoidoscopy scheduled for next Monday. Reagan and Ryan both fell asleep in the car on the way home! They were alternating snores...it was too cute! Reagan continued sleeping once we got home and slept straight through PT. That was OK because it allowed her therapist to get some good stretching done. She woke up in time for a bath and lots of snuggling with mommy tonight! Such a sweetie!! Love this girl!! 

6 comments:

charity said...

i read your blog and i find it educational to see what meds you try with reagan and what works and what doesnt for her. glad shes not nauseas anymore

Reagan Leigh said...

Thank you Charity! Sometimes I think it's hard for people to read about Reagan going through so many bad days...but we're living it! Obviously, I would like nothing more than to have only good things to post about Reagan's days, but at this point in time that's not her reality (or ours)!

FirePhoto23 said...

What kind of car seat does Reagan have?

Anonymous said...

A dear friend's child was recently diagnosed with mito and I read your blog for a glimmer of understanding about it from what you(unfortunately)have had to learn. I am grateful to you for sharing your experience and knowledge in such a detailed way. You are SO entitled to vent. I can barely imagine the feelings of frustration, helplessness and anguish about Reagan's struggles with this nasty disease. It is so clear how hard you both work to provide her with the best possible quality of life. And how much you cherish those good moments with this sparkle-eyed, sweet, beautiful child. I hope you are surrounded by support and get enough(or at least some) battery-recharge time. It's the Lunar New Year (my tradition) and I send you the best wishes for the new year.
Anmei

Reagan Leigh said...

Thank you so much Anmei for your kind words!! We certainly do treasure good days for our girl, though at times they seem far and few between!
As far as Reagan's car seat...she has a Britax Traveler Plus that is way too big for our car so we don't use it at all right now. What we are using is her Special tomato sitter (as kind of a booster, just to keep her from sliding off the seat) with the EZ-ON Adjustable vest harness for family vehicles. This combination seems to work really well for her (and we use a similar combination of the special tomato chair and the CARES Safety Restraint System on airplanes when we travel). The special tomato mobile sitter is really is the best thing we've ever bought for her!

FirePhoto23 said...

Thank you. I have a friend who has a daughter who is out growing her current special needs car seat and I saw your set up. I will let her know. I hope she has some better days coming up..