Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Tuesday, May 14, 2013

Life is Good

I just realized it has been a little while since I posted an update on Meagan.  That's truly how busy we have been!! The household never stops - it's our way of life.  But I'm happy to say that the latest busy times have been all for good reasons. We have had recovery times at home with Meagan, First Holy Communion of our oldest daughter, expected and surprise family visits, the school year winding down, our third daughter graduating preschool, and Irish dancing craziness with competitions and classes.  Meagan is a trooper through it all - she just tags along to whatever we do and so far seems to enjoy it.   I hope this means things are on the upswing for Meagan and for us as a family.

End of soccer!

Irish Dancing winners!

First Holy Communion for Reilly!

Preschool Graduation for Anna!

Meagan hanging out at the graduation party

Enjoying a visit from Nanny

Ever since Meagan's Chiari surgery she has been a new little girl, as I posted before.  But we have seen this again following her g-tube surgery.  I know now her little body was definitely needing some more nutrition - within 5 days of getting her tube placed, Meagan gained a whole pound. A POUND.  That is crazy.  She had barely gained a few ounces in over a year.  What was more amazing than the number on the scale is the immediate strength and "fulfillment" I have seen in Meagan since then.  She just seems better all around.  Happier.  More content. Stronger. Chunkier :)  It's amazing what a little nutrition can do.  I'm so glad we decided to put the tube in -  I have seen the amazing changes in her body and attitude from the added calories and nutrients.... a part of the puzzle I think we often overlook when worrying about our child's development.

Enjoying a "spa" treatment from her big sisters

Meagan got back to her therapies just a few weeks ago.  We waited a bit because of all the surgeries and hospital stays - and because of her PEG tube.  While doing well with it, it was extremely tender for a few weeks after, so it made most of her work at PT basically useless since all of it seemed to hurt her belly.  I was in no rush to push her back into therapies because my first goal was for her to feel well and get better.  Once I started seeing her personality coming back and all the good changes, I knew it was ok to get back to her PT and OT.

Her first few sessions back, she was of course miserable.  She wasn't used to working for an hour anymore, and also was just tired from being out of her routine.  We figured it was going to be a gradual road getting back to where she was pre-surgery and we were fine with that.  We work on "Meagan time" not on any other schedule when it comes to her therapies and development, so we just sat back and let her take her own path.  Well apparently, Meagan had other ideas about her "timeline."  Literally in the last few days, she has started to try and sit up.  Yep. It's been that sudden.

 Typically, Brian and I try to have some down time when the kids are asleep and watch tv or something similar while finishing up some laundry or other chores.  Meagan will lay in her nap nanny and start her bedtime routine and I will hook up her feed and get it going.  She will generally play with her tube line or even chew on it (silly girl) and then tries to flip every which way in her nap nanny, but will finally drift off to sleep.

Typical Meagan when falling asleep.......

Out of nowhere the other night, I turned to look at her and she was sitting forward in her nap nanny playing with her toes.  I had to rub my eyes to check again and yep! There she was. Just pulling herself upwards like it was 'old hat' or something.  I could not believe it! Since that time a few days ago, if propped up in a sitting position on her blanket, Meagan can hold a one-minute sit on her own before she topples over! I think for sure this summer, we are going to have an independent sitter on our hands which is really exciting. But first we have to get her using her arms and hands.  She still REFUSES to put much weight through her arms for the most part.  So while it is exciting seeing her try and sit, we have a lot of work to do with her arms.  We have to also be careful to balance out her desire to pull up with more tummy time or back exercise.  Her little tummy is getting very strong, but, her back is weak which is making her lower back start to curve.  So we will definitely have to find a balance of strength there while continuing to encourage her to do the things she wants to do.  I think as soon as she realizes she can use her arms to help her sit up, or to stay sitting once in a seated position, she will be do it without hesitation.

Ummmm.. ok!

Cognitively, she is a complete ham.  Meagan has always had a "funny" side to her, but it has exploded especially in the last week.  She is copying everything her sisters or I do.  She always loved observing people, but, now she literally tries to mimic everything she sees. It's hilarious to watch because sometimes the signals into the brain don't always match what comes out in her action.  At times you can almost see herself looking at her hands or arms like "Why did you do that? I didn't tell you to do that!"  It's something I am always amazed by.  Watching the process.  Something I missed with my older kids.  Not because I didn't pay attention, but, simply because they just "do" the next thing they are supposed to do.  With Meagan it has been quite interesting to actually see the process unfold for each of her movements or gestures.  You can literally see the messaging going into her head - her thinking about it - and then an action resulting from that thought.  It is amazing.

Meagan's newest "tricks":

"No no no!"

"oh my" (and she also fell asleep like this)

"Where's your ear Meagan?"


She did have a little bit of leakage coming from her tube site this last week.  The typical "ooze" was ok - but we actually started having blood...and then more blood.  Luckily she had her GI follow up yesterday.  Dr. B said that he would just go ahead and cauterize the skin right there in the office to take care of the bleeding so it didn't lead to any worsening problems or infection.  It took about 2 seconds to do and the skin is all better now. No more oozing or bleeding and her site looks great.  He was very happy with her weight gain and her recent developments, so now we just keep on what we are doing and she will get her MicKey button put in around the second week in August.

 This is Meagan with her sweet cousin who is always looking out for her. They are so funny to watch together!

Overall we have had a calm and happy few weeks with Meagan and all our girls.  We are so thankful for a few great weeks in a row (what's that??) considering how awful the last few months has been.  Of course we will always have hits coming.  Medical bills are starting to trickle in from the last few months ....and our lovely air conditioner that has now decided to quit before summer (I mean, really!?) ... but who ever really gets out of the fight? That's life.   With all the good happening right now, it is my choice to ignore all the stress and focus on the fun things that are going on.  Life is a process...just like Meagan's learning is a process.  It's an amazing thing to watch and the moment we forget that is the moment we forget to live.  Can't wait to see what's in store these next few months for our whole family.  One thing is for sure - we will certainly be doing a lot of living...and loving every second of it!

 Totally wiped!

Best Mother's Day with my girls!


  1. I love all the pictures!!! The girls are growing up so fast!!!!!!!!!!

  2. Glad things are good crazy and the medical "stuff" has died down for now. It does seem to come in waves doesn't it? We are in a medical wave ourselves as Ellie just had her second revision in under 2 weeks after being rushed via ambulance to the hospital Friday night.

    Your whole family is just lovely! I hope things stay quiet for you.

    1. Oh goodness! Hope she is doing better now!! It's always an "adventure" for sure.