Life as a Leach

I apologize for the lack of posting.  But...no news is good news in the medically fragile world!  Abby has been doing SO well and we are thankful for the many improvements to her health.  She had a touch of pneumonia in the beginning of February and stayed at home!  This is huge because pneumonia can be a beast for diseased lungs.  She did her breathing treatments like a champ and hung in there just fine.  The last few weeks, her school has been pretty germy.  We kept her out for a week and a half to protect her while the flu made its rounds.  Everything is looking much better now though, so she happily went back on Tuesday.  While she is the one of my kids who I could easily home school, she is also the one of my two who simply loves being around people! Today is Rare Disease Day, and I wanted to share what I have been posting on Facebook with you all here. Cerebrocostomandibular Syndrome, Abby’s primary diagnosis, is extremely rare. T...

My Facebook memories showed me a video of Abby from 5 years ago today.  It's a sweet little clip of her nearly 3 year old self yelling, "No more tubie!!!" and showing me the band-aid that covers where her gtube was.  I remember that day so well.  We went to a feeding clinic appointment hoping that we would get the okay to pull the tube, since she hadn't used it in over three months, but figuring we would need to come back for a separate appointment to do it.  I was ecstatic when the GI told us he could take it out right then!  This was momentous because it was the first day in Abby's little life that she was officially free of all medical devices.  I cried many happy tears that day. When that video was taken, we didn't know that she would be getting that tube surgically put back in just a little over a year later, thanks to a major jaw surgery that would make her completely tube dependent for many months.  We had no idea how far she would regress i...

Today, my girl walked back into her school with her brother, hand-in-hand.  After being diagnosed with sepsis in May that attacked her respiratory system and forced her surgeon to remove the hardware on the right side of her chest wall, causing it to collapse, Abby's lungs began to fail.  In October, she was officially diagnosed with lung failure and we were told that since she was no longer eligible for a trach due to fusion in her c-spine, there was really nothing else they could do.  We put her in a proverbial bubble and prayed that she would stay healthy.  We celebrated her birthday and Christmas, silently acknowledging that it could be her last. Once again, God performed a miracle in Abby's life.  Her lungs began to improve and she became less reliant on the ventilator to help her breathe.  We started exploring the idea of her going back to school in the spring.  Abby continued to become more active and was able to play and enjoy time out...

Have you ever knelt next to your child as he or she gets sick, or cuddled your baby with a raging fever, and just wished you could take it all away?  As miserable as it is at the time, you are so grateful when it gets better and you forget about how bad it was. I feel this way all of the time, except that it is not going to get any better--at least any time soon. Watching my little girl cry from the intense back pain that she has recently been experiencing makes me wish it were me instead of her.  I know how bad it is when she actually asks for the pain medicine that she hates to take.  We aren't sure if she needs an expansion or if her kyphosis (hump) is getting worse, but it's definitely affecting her.  Hearing her sadness when she realizes she can't participate in her first dance recital because she'll be recovering from surgery brought tears to my eyes.  I didn't realize that she didn't know, but she sobbed when I had to break the news to her.  I ...

This sweet girl has been home with us for 5 years!  I will never forget the day we brought her home--so many happy tears! Thank you, Lord, for 5 years of having laughter and joy fill our home!

Abby is post-op day 7, so it was time to remove her bandages.  This is never fun, but tonight was absolutely miserable!  They used a different kind of bandage and it was impossible to get off.  I always soak it in almond oil to loosen the stickiness, but the oil did nothing to help this time.  She was absolutely sobbing and shuddering in Matt's arms while I tried to be as gentle as possible.  There were three sets of tears falling by the time we were done.  :( So tonight after Abby was asleep, I decided to work on a project that someone had shared on our VEPTR support group.  I used the dot paints to document some of Abby's medical challenges that aren't so fun.  We will keep adding to it as a way for her to show off her bravery! Red = hospital admissions (just admissions, not the number of days--that would fill up the poster!) Orange = blood draws Purple = surgeries Green = xrays and ct scans I had to estimate a bit on the blood draws...

Our newest additions!  #thisisserious #wedontmessaround #noflushotnovisit

I posted about the flu mist on Facebook a few days ago and had a great response.  So many had no idea that the flu mist was a problem for medically fragile kids. If your child is otherwise healthy, it should be fine.  It's the ones who are susceptible to germs and have chronic diseases who are at risk, because it is a live virus. If you're choosing between the flu shot and flu mist for your child (or no flu vaccine at all...), consider this:  medically fragile kids cannot be around those who had the flu mist for up to 3 days because it is a live virus.   We have to keep Abby home from school on the days these are administered. There are 2 days, because kids getting it for the first time need two doses. I found out they usually use the pre-k room to administer the flu mist!  (No worries--that is going to be moved!)  If your child had the flu mist, please let me know so that we can avoid contact for 3 days after.   Also, anyone who chooses  not to g...

Thanks to a bunch of wonderful people, Abby's first week of school went perfectly!  She absolutely loves it and asked today if she was going to school. She was disappointed to hear that we were only in the car to go to Caleb's fencing practice. :) Our awesome new PT was there almost every second of the first three days (T, I feel like I am almost cheating on you by calling MB awesome!  But you know how much we adore you!) and examined everything closely to see how she could help Abby to be more independent.  One of the custodians heard that Abby couldn't do a particular style of paper towel dispenser, so she switched it out for one she could do! I was so surprised and grateful!  There's a stool there so that she can reach things, and we have trained the bus drivers and assistants (she will ride a different bus coming and going) in all of the safety precautions.    Abby's teachers, the wonderful Mrs. C and Mrs. Y, have put a lot of procedures in place to hel...

Today was Abby's first day of Pre-K at our local elementary school!  She did great!  We walked to the door just as the bus was letting off.  Abby said goodbye, joined the line, and walked right in! I did stay in the building (since the nurse was going to be out), making copies for the 3rd and 2nd grade teachers and pulling a few groups. She didn't know I was there, and I kept it that way!  She did totally fine, and the biggest "issues" were that she wouldn't sit in the chair they provided her per her IEP (she can sit where she wants to sit!  It just needs to be available) and she didn't want to sing.  I do believe the child was showing her sassiness right out of the gate.  :) A lot of people asked me if I cried.  Yes, I did.  But they were not tears of sadness that she is growing up.  They were tears of pure joy and thankfulness that we have made it to this point. You see, When you cried because you couldn't get your colicky ba...

If you haven't heard (because you live under a rock!), Dnterovirus D68 is closing in.  While there haven't been confirmed cases in Maryland yet, I know it's just a matter of time.  This message from the health department confirmed it! http://www.calvertlive.com/health-department-warns-of-enteroviruses/ Please, PLEASE wash your hands often! EVD68 is hand sanitizer resistant, which means you HAVE to wash your hands to keep it from spreading.  And for the love of all things holy, DO NOT send your kid to school sick!! This virus turns bad quickly and it spreads rapidly.  I know that childcare is often an issue and who wants to take a day off, but this is serious here.  Be careful. Read this too.  Maybe it will help you understand my position.  http://allthathathlife.wordpress.com/2014/09/16/just-a-little-cold/ NO, I'm not overreacting.  What could be s bad cold for your child could be deadly for mine.  It's my reality.