Wednesday, August 28, 2013

Wow is all I can say

I recently spoke the words, "I cannot in my brain conceive that Lillian will be able to use the bathroom on her own".  Starting Monday, I took off her nighttime diaper and purposed to take her the the bathroom every 20 minutes.  I did.  She did fairly well, until evening and our friend miralax hit her.  She tried really hard, but for most of the evening she struggled.  I did not give her miralax yesterday and we only had two accidents.  Today...she is doing phenomenal.  She just now went and had a bowel movement on her potty seat.  I'm telling you I'm sitting her in stunned amazement.  It almost brings me to tears.  The only real problem we have??  She's so tiny, even the smallest underwear I can find are huge on her and are bugging her to death.  I'm totally amazed and feeling extremely blessed.  It's still hard for me to fathom that I will likely not need to buy diapers for her anymore.

Homeschooling is going pretty good.  She is interested and engaged once I get her settled down enough to focus.  Much to my surprise, I'm able to incorporate speech and OT activities into most of our day.  The bigger girls are helping with PT activities and I'm very pleased with how that worked out.  I was so worried I'd be a miserable failure at trying all of this, but by the grace of seems we are thriving.  The only real problem, our cable has been acting up which is knocking out my internet which is a huge obstacle.  Hopefully that will be resolved today.  I do find that I need to really set aside time for planning out the whole week and get things printed, just so I feel more prepared.

Getting in the feeding stuff is a little more difficult...but I'm working on it.

Health wise, she is still struggling with this ear infection that threw her into a two week respiratory issue.  She is better, but still lots of gunk coming out of the ear.

She continues to show love and excitement about her baby brother who will soon join our family.  It seems so many huge milestones are hitting our family all at once...big, huge significant ones...oldest child licensed and driving her own car, baby coming, potty training....feels like such a sweet spot in our life, even with all the negative things that have recently happened.  God is good.

Saturday, August 10, 2013

These are the days I feel nervous...

Our girls started back to school this past Thursday.  All in all everyone is happy to be back.  I will be homeschooling  Lillian this year. I'm waiting to hear back from her teacher who will oversee what we are doing and also provide materials.  Ironically, she fell sick the day before school started.  Waking up vomiting, coughing and running a fever.  Her cough sounds like croup.  A first for her.  She had to go off formula feeds for a day, but her night drips are not going well, as every time she sneezes or coughs, she gags/pukes.  Our good friend albuterol has rejoined our med regime and today we have notated a foul odor coming from her ears.  She IS and HAS been on antibiotics virtually non stop since January, and her illnesses have seemed fewer and perhaps less severe.  Hopefully, she will soon get back to baseline and we can start a routine here before baby boy makes his entrance. Seems like most of the time her junk lasts about a week.

These are the moments when I feel fear creep in.  Taking care a her being sick and also having a newborn to care for.  Lord give me strength for the journey ahead.

Tuesday, August 6, 2013

Feels like smacking into a wall over and over and over...

I'm sorry everyone, I try...I mean I desperately try and do for the most part stay positive about most everything.  Relatively speaking.  But here I am awake way before necessary because I'm plagued by irritation.  Once again, I'm left grasping at straws as I seek medical advice from those "guiding" Lillian's care.  I have been waiting since Thursday to hear back from her pediatrician in regards to this whole therapy situation. Well.....yesterday I get a phone call from one of the nursing staff letting me know that "speech therapy has sent them a recert to continue everything is set for her to continue with therapy"

HELLO???  Do these people even LISTEN?  Do they HEAR me?  I told her that I was aware they were getting her recert because I've already told them I won't take a break at this point in time.  I REexplain to her the situation and she goes on to tell me it's my choice.  ARE YOU KIDDING ME???  I go on to let her know that I"m aware that it's OUR choice whether or not to take a break, and that I'm NOT asking the DR to "gang" up on the therapists with me.  What I'm seeking is medical guidance from the professionals in charge of her care.  Is this a difficult concept?  Am I the one missing something here?  Once's fully laid on MY shoulders....there is NO medical advice given except.."oh he signed the papers, you're good to go".

Hear that pounding sound?  That's my head against the wall.

Seriously, waving the white flag...throwing in the towel....I'm so frustrated.  I think I told her that her phone call was no help at all.  I was totally exasperated by the end of the conversation. seems to me that THEY see a child with a very limited potential... that she is so delayed that it doesn't matter if she regresses.  It feels like they are saying it just doesn't matter.  Perhaps my expectations are just unrealistic?

There are so many type-o's in this post, I gave up trying to correct them as I went.....

Just another day in the life....