Life as a Leach

I learned long ago that PT is much more effective when it is fun and infused into every day activities.  To really improve gross motor skills, you need to be doing frequent movement--not just "going to PT."   I often say we have a therapy lifestyle, where we just incorporate therapy into everything we do.  That means we set up obstacle courses, have gladiator battles standing on stability squares, ice skate around the kitchen, see who can stand on one foot the longest, swing on the disc swing, etc.  Most of the time, Abby doesn't even realize she is doing therapy.  If you have a therapy mindset, you really can get a lot in just by playing! Last weekend, Abby's cousins were over and they were putting on a show for me, as they often do!  Today's performance was The Lion King , and they were singing, "Can You Feel the Love Tonight?"  There's a rather long musical interlude, so I announced that they should all pretend they are differe...

On Thursday, Abby will be 3 months post-op from this awful Shilla surgery.  She has really been through the ringer with this one:  between the infection, the pain, the numbness, and the bladder issues, we were really just praying for a glimmer of hope. You see, 3 months marks the time when our surgeon said her recovery would be about as good as it is going to get.  Given that she still struggles to walk further than from the parking lot to the front door without resting, we were really hoping that she would have progressed farther than this.  Don't even get me started about the numbness in her legs... But tonight, God gave us that glimmer.  Abby decided that she wanted to stand up on her own without holding onto someone or something to support her.  After several attempts and a whole lot of willpower, she did it!!! And yes, we both cried.  :) THIS IS HUGE!! Matt and I both feared that she may never be able to stand up on her own again.  ...

Really, I do!  But I don't love when he tears up my daughter's brand new Calico Critters that she earned from Nina by working so hard at pt.  I don't love when he tries to steal her food. And I really don't love when his 100 pounds runs into her multiple times and I have to catch her once because she's about to fall over.  The mom didn't even tell me about the toys until later, and she wasn't at all apologetic.  In fact, she told me the dog chews toys all of the time!  Even when Abby was sobbing over the dog eating her toys, she didn't really seem to care.  She made it pretty clear she really didn't want us there. Since this became a safety issue with the dog running into her, I asked for Abby's room to be moved.  They have had multiple problems with this parent and completely understood.  After some thinking, they placed Abby with a little boy who has a very nice family and is very quiet.  He is pretty much bedridden and I haven't heard him ...

Can't sleep, so I might as well write!  :) Today was another busy day of dealing with insurance issues, doing lots of therapy, and making the best of being in the hospital.  Abby had two sessions of art therapy, which rank right up there as a close second to music therapy, so she was thrilled!  She also had a tough session of PT, where our therapist did lots of stretching and exercises to strengthen weak muscles.  Abby loves to exercise about as much as I do, so this session included lots of crying and fussing!   She is getting used to the brace, but if I make a comment like that, she makes it quite clear that she hates it.  :). She's allowed.  I would too!  At least she isn't fighting me anymore when I put it on her. When we are on our own, I try to incorporate therapy into our activities as much as possible.  She opened a present of bubbles today and was excited, so I got her in a tall kneel by the bed and had her blow bubbles.  We alt...

Holy moly, recovery is a roller coaster!  Abby is like a hormonal teenager with her highs and lows!  One minute, she's laughing and enjoying music therapy or crafts, and the next minute she is screaming bloody murder over the injustice of having to take 5 bites of food.  Shew! She is still making it quite clear that she HATES the brace, but she is at least resigned to wearing it.  I got permission to remove the neck piece during meals so that she can eat easier.  I have lost count of the number of times I've reminded her "you can do hard" through the therapy, pain, and brace-hating. 😕 Overall, today was productive.  Abby got her PICC line out, I made a lot of phone calls to insurance to work on her rehab placement, she enjoyed music therapy,  played bingo, and painted a trophy.   She also got her post-op Xrays done this afternoon. The front view.  The straight rods are the new Shillas. On the left is an X-ray from July and on the right is to...

Today has been a really busy day!!   This morning, Abby got a visit from Queen Elsa herself!  This sweet college student dresses up as princesses for parties and wanted to spread a little joy at the hospital.  Abby loved it! Then, Abby had PT with her primary therapist who takes on the VEPTR cases.  After having Abby walk and attempt the stairs (SO hard!), she felt that Abby could benefit from intensive therapy before heading home.  The rehab doctors did an evaluation on her later today and agreed that inpatient rehab is necessary, so she will be heading there pretty soon.  The timeline will be determined by insurance, bed availability, and when her brace comes.  She was supposed to get it today, but when the people came to fit her,  they determined it didn't fit.  Turns out, the guy who measured her wasn't overly accurate....oops.  She was remeasured and also scanned to create a digital image of her back, so it will hopefully be done ri...

I know I've been neglecting my blog, so I wanted to do a quick update on Abby's progress.  She's been getting stronger every day, and even walked 20 minutes on the treadmill yesterday!  Cartoons are a wonderful thing. :) We have noticed that she is still walking with her head tilted.  She does this after every surgery, but this is longer than usual.  Her OT is also a little concerned, and feels like she is meeting resistance when she manipulates it.  Abby has a lot of pain when straightening it while standing, so it may be that the rod is blocking it.  This could just be what we have from here on out. We are still working on it.   Other than that, we have been enjoying the nice weather and the first few days of summer!  Purple lightning (the wheelchair) accompanies Abby out in crowds for safety.   Abby will go to a 3 day camp at a local art center next week.  The director wasn't quite comfortable with Abby's needs, so Caleb and I will st...

Abby has started at a new therapy center, and we are loving it!  It's closer to our house than any other therapy we have had, and things are going really well! She really likes the speech therapist, who does a lot of play therapy (Abby is SO not a flash card girl!) and has a personality that is easy to like.  She's young and energetic, and Abby even gets to go to the therapy gym sometimes to play while working on speech skills.  Bonus:  Abby has already talked to her more than she did the last private therapist we tried! We have also started OT there, because the owner of the company is an OT who was willing to try post-op therapy with Abby.  They have PTs, but we were previously told that they couldn't take Abby because she was too complex.  The owner agreed to take her and would be her exclusive therapist.  She seemed very eager and willing to do whatever Abby needed, so I'm really hoping it will work out. We are going to try it out and see how it go...

On Monday, Matt and I met with Abby's preschool teacher for a conference.  She meets with all of the parents to discuss strengths and weaknesses before kindergarten (Abby has another year, but she's in a class with older students).   I couldn't stop the tears from falling when she said, "If I didn't know that Abby had concerns, I would never suspect anything."  This woman has known our family for so long and she is well aware of how far Abby has come.  Her words meant SO much to me.   When you have a child who you were told would be little more than a vegetable, you learn to be thankful for every milestone.  You try not to compare to other kids and just celebrate as she gains skills, but you constantly Google age-appropriate skills to see where she falls.  You pray from the beginning that she will have a natural love of learning and are so thankful when she does.  You incorporate learning into everyday play and live a therapy lifestyle.  ...

As predicted, my girl's days have been very busy this week!  Yesterday, she had OT with one of our favorite therapists, who has a little girl just Abby's age.  He's so much fun and Abby adores him.  Today, she had PT and speech and had lots of fun doing those too.  The therapists do a great job of making it as fun as possible. Abby also got to spend several hours playing with the therapy dogs, Yuba and Katie Bell.  She was the only one in the playroom for most of the time, so she was ecstatic to have the dogs all to herself!  She played doctor, threw toys, brushed them, and gave them lots of hugs. The girl loves her some doggies!! Eating has been going very well and her chewing looks fantastic!  She was a bit more uncooperative in general today, so she didn't eat quite as much, but that was just her mood.  We are taking the opportunity to try new foods while she has all of this interest in eating!  I keep track of every single thing she eats,...

I was recently interviewed for an article a blog friend of mine was writing about the benefits of Early Intervention.  She wanted to hear about our experience and how we felt that it has helped Abby.  I jumped at the chance to brag about the awesome therapists who have become some of Abby's biggest cheerleaders. After all, we are big fans of early intervention!! Check out the finished product (and see a few pictures of a cute little girl, too!)

We learned early on that the best way to help Abby with her development is to just adopt a therapy lifestyle.  We don't "check off" her therapy when it's done each day.  That could limit her therapy to just 10 or 15 minutes a day, and she needs much more than that to be successful. Instead, we incorporate therapy into our daily activities so that they are embedded into everyday life.  Most of the time, Abby doesn't even realize she's working! Here are a few examples of ways we incorporate therapy into our day to day activities: *  We have Abby push any doorbells and elevator buttons (she has to stand on her tiptoes, which strengthens and stretches her leg muscles and improves the arches of her feet) *  At the grocery store, we have her call out the names of the fruits and vegetables she sees.  We discuss the color, the shape, and the size.  We'll also compare the sizes of different types of produce.  It's amazing how much language you can ...

This post has had several drafts...one was pretty venomous...one was slightly more mild, and this one was written several days after the initial contact.  For some reason, Blogger wasn't letting me publish my first two drafts.  I'm pretty sure it was God telling me to calm down and gain some perspective.  Consider this version fairly tame and edited. We had a family meeting with Abby's therapists on Thursday to discuss Abby's progress in the feeding program. Feeding-wise, Abby is doing really well.  She is eating a lot more volume, and is also more willing to explore different textures.  The milk intake is becoming more consistent and normalized within the meal (rather than constantly chasing after her to drink her milk!).  She is starting to gain weight and has now gained 1 1/2 pounds since she has been here.  The nutritionist changed her formula so that she is now drinking a higher calorie Pediasure.  This way, she won't have to drink so muc...

I came across this post from one of my favorite blogs, Love That Max.  It was exactly what I needed in that moment. Because of all of the speech and gross motor issues going on right now, my head spins with all of the different exercises we are supposed to be doing.  There are times when I totally forget about the exercises in the craziness of the day until after Abby goes to bed and I have a minute to think! We do work incredibly hard with Abby, but we're only human and sometimes we forget or get busy. The speech therapist we saw at our cleft palate clinic gave me some good advice.  She said I need to give myself permission to relax the therapy every now and then and just have fun with Abby. She's right. Just like the post above says, there's plenty of developmental goodness in tea parties and playing in a dollhouse without "therapizing" everything.  I've been so worried about the development that I've started to force the therapy.  That isn...

I gave Abby a strawberry in one of those little mesh feeders.  I didn't expect much, but thought maybe she'd taste a tiny bit of the juice.  I certainly didn't expect for her to go to town on it like she did! She ate almost the entire thing by the time she was done. My favorite part of this video is the adorable grin she gives right about at the 1 minute mark.  It warms my heart.  I took this video on what was a rather tough day for me, and then I replayed it about 10 times just to make myself smile.

We are off to a special needs night at a local museum tonight.  It's nice to be able to do positive things together as a family because of Abby's special needs, instead of always having to say to Caleb "We can't do____because of Abby..."  He is excited to see the otters at the museum tonight and so are we! In the meantime, here is a link to a good article written by a speech-language pathologist about encouraging speech with your child.  While it is geared toward children with speech delays, the list has good reminders for all parents.  (Say it with me now...NOOOOO baby talk!!)  :)

 I will admit it:  I love Pinterest.  I purposefully don't go on there very often because I know that three hours would go by before I knew it.  But I have found that purposeful searching (and then getting the heck outta there!) has proven pretty awesome!   A quick search for Easter gift ideas led me to Peeps S'mores!  We created these little baskets for Caleb's teachers, the nurses, and Abby's therapists. I made little tags for each basket and printed off directions for making the Peeps S'mores. It's nothing fancy, but we like to say thanks to some of our favorite Peeps!  :)

I was recently asked, "What do you do all day now that you're only working part time?"  Yes, it was a serious question. Lest you think I sit at home lying on the couch watching soap operas and eating bon bons, let me fill you in.  I work, during a typical 5-day work week, 17.5 hours.  My schedule changes every week, but just for kicks, let's say I'm working Monday, Wednesday, and half-day Friday. Monday:  Relieve nurse at 7.  Work 8-3.  Come home, get report from nurse, make dinner.  Feed Abby, do therapy, play with Caleb, bedtime routine, trach-tie change, make milk, empty or run the dishwasher (it has to be run at least once a day!) wait up for nurse until 11. Tuesday:  Relieve nurse at 7.  Matt is gone early for a Bible study.  Nurse comes at 8.  Take Caleb to school at 8:45. Run errands.  Clean. Watch my niece (which I love!) while my sister volunteers at her kids' school.  Pick Caleb up at 12:40....

This girl has so much personality!!  This is the look she often gives her physical therapist when Abby doesn't want to do whatever she is trying to make her do.  It's like a, "Do you really think that's going to work?" kind of a look, because Abby is too stubborn to be coerced into doing something she is against.  I'm hoping that this will do her good when she's older!

We work her so hard all day long! No breaks, no naps, only work, work, work... ...so a girl's gotta do what a girl's gotta do! **We really do let her take naps.  Please don't take that seriously.  She just fell asleep in here after a long day!