The Fragile Files Weekly Link Up – The Roller Coaster Week

Welcome to the first edition of the Fragile Files.  This is an opportunity for bloggers with medically fragile children to share a weekly update with other bloggers who understand what it is like to walk each day with a medically fragile child.  It is also an opportunity for us to offer encouragement to others and to gain encouragement for ourselves from others who are walking similar paths.

The Fragile files is also a place for us to celebrate the smallest of victories among friends.  Many of these victories may seem minuscule to some, but I encourage you to read these stories.  Even if you are here reading as one who has never known a fragile child, stick around, read and pray.  Learn to love the precious little ones the way we do and be blessed by them.

Our Roller Coaster Week – The Highs

We started off our week flying high with our sweet Phoebe.  This was the beginning of our fourth week of “wellness.”  The previous four weeks brought huge strides in gross and fine motor and major progress with eating.  The biggest news is that she began standing on her own and even walking with her walker.  She was doing so well with feeding that we decided to spend the next two weeks doing some intensive therapy; meaning she would see her speech therapist every day in hopes of turning the corner and finally eating by mouth consistently.

The Lows

All was well until Monday night at bedtime.  I didn’t know exactly what was wrong, but something was off for sure.  She didn’t go down for bed easily that night and didn’t sleep well once she did.  By the next morning her nasal drainage had picked up and by Wednesday we were in the middle of a major sinus infection.

Typically a sinus infection is not a big deal but, for Phoebe, she struggles managing her own secretions day to day and has major difficulty when nasal secretions are added to the mix.

Before the week was over, we found ourselves in three doctors offices and back on antibiotics.  Phoebe quit eating because she could not breathe well enough to swallow.

By the weekend she was still not feeling herself, but she was able to play and smile by midday when most of the morning congestion cleared.

The Outlook

This is the way it is sometimes for medically fragile children.  Things can be going all according to plan.  They can be making progress all around.  Then, out of nowhere, one small thing can bring all progress to a halt and even set them back.

The key for parents is not to get discouraged.  Usually, not all progress is lost.

Phoebe still wants to eat, and she is still asking for tastes of food.  She is still crawling around the house, standing independently and attempting to walk.  She even got her first bump on the head from trying to walk.

Here are a few link up guidelines:

• Link up any post related to your medically fragile child or a post that would be a resources to a family with medically fragile or chronically ill children.  We will choose a post from the previous week to feature each week.
• If you do not have a medically fragile child but have a link that would provide a resource for our families, feel free to link up.
• When linking, please tweet, pin an share about the linkup to help us grow using the hashtag #fragilefiles
• Grab a button and place it in your sidebar and help us grow!
• Enjoy and comment on the posts of a few other link up participants.
• Join our facebook community of Fragile Files Bloggers here.
• Include the Fragile Files graphic in your post.