Tuesday, April 26, 2011

Ortho Appointment

Well, crap.  There I went again, and got my hopes all up for something that wasn't to be.  Seems I do that a lot.  

So, it's FOUR MORE WEEKS in the cast!  And that was the worst case scenario!!!  We go back on May 24th to have it removed.  But, it gets better.  Here's how it will go down:

We will go up and they will cut the cast down both sides ("turtle shell" it).  They will remove it, and measure her for her custom made brace.  She will feel the cool air and freedom.  Then they will put the cast BACK ON and secure it in place.  We will come back home for two or three days (time for them to make the brace).  Then we will go back up to have the cast officially removed.  Again, she will feel the cool air and freedom.  Then they will put on her brace.  She will wear it during her waking hours for the next several months.  Yay us!  

I didn't ask, but I'm assuming the brace will allow her to bend at the waist.  Which will be a very welcome change!!!  I think she'll still be happy and relieved to have the cast gone as long as she can bend at the waist again.  

As far as how she is doing... her surgeon said that she is happy with how her x-rays looked today.  Here they are:

Before surgery: note how her hips are so uneven.

After surgery

And here they are side by side, which I think really shows the difference.


Wowza!  All of her crookedness was between her ribs and her hips.  In the Before photo, it looks like her spine is coming straight from her right hip!  It is pretty exciting to think about how she's going to look after this is all said and done.  It will be a welcome change to be able to actually see a positive change after a surgery.  And I bet it will feel really good to her!

Side view of the screws
Here is a copy of an image from her CT scan (which takes three dimensional photos, basically) before surgery, of course:


A close up of the two bottom areas that were abnormal:

Also, the reason why there is only one set of screws when she had two different areas fused is because the fusion in the upper area (butterfly vertebra) was done by modifying (shaving and cutting) the existing vertebrae and using bone grafts that will eventually heal and fuse together over time - without the need for screws.  She said that this will hopefully save some of her growth plates in that area, whereas the screws eliminate the growth plates in that area forever.

No new cast today, either.  A new cast would require OR time and anesthesia, and it's just not worth it.  So, they used the cast saw to cut away some areas of the cast that were particularly bothersome and/or dirty.  In the back, all the padding and soft border covering came off.  So, he did his best to make it better and more comfortable for her.

She was not a happy camper.  And Brandy got a work out trying to hold her still.  Gabe did the best he could, but she was far from cooperative!!! Harlie, not Brandy, I mean.  Brandy was very helpful and cooperative, as usual.

He also removed the gauze covering over her incision.  It was truly disgusting and a breeding ground for bacteria!!!  But, surprisingly the incision looked really neat and clean (meaning the cut) with no stitches that you could see.  She said the stitches were put underneath.  Crazy.  It was a relief to see that there is no infection.

So, that's that.  Four more weeks.  And three days.


Back to Northern VA

Murphy went back to school yesterday.  And I made a lot of phone calls, trying to get somethings scheduled and figured out.  I'm on a mission - but more on that later (in an upcoming post).  

And yesterday marked four weeks in this cast.  In some ways it's gone by fast.  But I'm officially over it. And so is Harlie.  Despite the itching, she's still in good spirits.  

Harlie working out with a 5-pound weight!

Homeschooling session with Mrs. Katie.
Today we have our first follow-up appointment with her surgeon.  The cast looks terrible.  The stuffing has completely come out along her back.  The cast edges are quite sharp without the border.  Tom put some duct tape on it the other night and that seemed to help and look like it was more comfortable.

Until the next morning when it came undone and then somehow got turned around and stuck to her back.  Keep in mind that this girl's number one enemy is sticky stuff.  She HATES anything sticky.  And she had a big strip of duct tape stuck to her back that HAD to come off.  It was not pretty.

So, part of me is really hopeful that her surgeon will either change it (give her a new cast) or say heck with it, she's healed GREAT and put her in a brace.  I know they are long shots.  But, without hope you've got nothing.  So, I'm putting her car seat in the back of the car - just in case.

Well, I have to go.  Lots to do to get ready to leave.  Our appointment is at 10:30am.

Hopefully I'll be able to give you an update while we are there.


Happy Easter

I originally started this post on Sunday night.  But I feel asleep with my hands on the keyboard.  Nice.  

I'd like to say Happy Easter!  And mean it.  But to be honest, this Easter was not the best.  

We didn't go to church (no nurse = no church).  We didn't dye eggs (well, Tom and Murphy did - at 8:00 Sunday night). We didn't have the family over (just my Mom and Dad came for dinner).   Everything feels so difficult right now.  I keep telling myself that it's just temporary.  That everything will be better when she no longer has that cast.  But, while it will be SO MUCH better when it comes off, a lot of what makes our lives difficult will remain.  Grrr.  More on that later (as in another post)...

On Sunday, after eating candy for breakfast, we all went for a walk to a playground almost one mile away.  Cooper walked the entire way!  

Later that afternoon Tom turned on the sprinklers for Murphy and his buddy, C.

While all the boys were outside, Harlie and I hung out inside...

Monday marked FOUR weeks in this cast.  Harlie is now itchy and miserable.  She's having a hard time sleeping and will wake up crying, pointing to the same spot.  The instructions given from the hospital were very clear to NOT put anything down in the cast.  But I can't imagine that many people obey that rule.  So, I figured out that if she lays flat on her left side, and I gently pull up on the cast on the right side, I can just barely get a long, wooden q-tip in there.  So, now she asks for that a lot.  Unfortunately, that one particular spot she keeps pointing to is so tight to her ribs that nothing is getting through there.  

More later!

Friday, April 22, 2011

Brandy's Anniversary

As of February 14th, Brandy has been with us for FOUR years!  I can't believe how lucky we are to have such great nurses.  Home health is NOT known for caring, reliable nurses.  In fact, I hear horror stories all the time about abuse, neglect and criminal activity by the very people that are supposed to be taking care of special needs children.  That is why when the doctors told me I'd have to have home health nurses I said, "Um.  No thank you."

Harlie came home on November 2, 2006.  By December, I realized I needed help.  Not wanted help.  Needed help.  I called every agency on the list provided by my Medicaid case worker.  Out of all the phone calls, I spoke to only one helpful, courteous and nice person.  I chose his agency.  He sent a nurse out and she started working some days, and some nights.  She was okay.  But it was SO scary to put my precious, medically fragile child in her care and then leave the house.  With no surveillance!!!

She didn't stay long.  I went Christmas shopping one day and when I came home she had not fed her at all since I had gone.  She was in desperate need for every calorie (at that time she was 11 weeks old and still only weighed 7 pounds!!!).

I called and told them not to send her back.  I interviewed several after that, but none of them were right. Or even close.

Then, a friend of ours spoke to his friend - a nurse - about us.  She called, we spoke, I liked her over the phone and she came over.  We clicked!  She was hired and started on February 14th, 2007.  Ahhh.... and now she's a part of our family.  Lucky us!

And she's willing to do the hard stuff, too...

She loves Harlie and Harlie loves her.  Our lives would not be the same without her.

So, thank you, Brandy!  Happy Anniversary (over two months late)!

Wednesday, April 20, 2011

Harlie's First Trip Out

This morning we went to Maymont Park.  I was certainly a little uneasy about taking Harlie out on her first trip.  But I'm glad we did.  Thanks to Jennifer for making it happen.  We had to take two cars, so Jennifer had a friend of hers come with us so she could drive, too.  Thanks for all your help, Kristy!

Getting buckled in.
I don't think I ever told you about Harlie's car seat.  Getting her home from the hospital was tricky.  She wasn't the safest she could have been if we had better equipment.  We did the best with what we had, but it was far from ideal.  After brainstorming with a few folks, Tom came up with a great solution.  We took her harness that she uses on the bus, which has D-rings at both shoulders and both hips and latches in to a system on the bus.  Tom bought that same latch system, and we used her school harness.  This system is also used by parents of special needs kids (for kids that won't stay buckled in, I guess, since the zipper is behind the child and they are unable to unbuckle themselves).  Much safer!

We went in the morning, so we could try to beat the heat.  The forecast said it was going to be 86 today. And Harlie would roast in that cast!  She wanted to be picked up a lot so she could see everything.  Between lifting her and all the walking, Jennifer and I got a nice workout.

Look at this hill!  That is Cooper at the top (in the middle of the photo) wearing light blue.  And Kyleigh (Jennifer's daughter who is just two weeks younger than Harlie) and Murphy are just under him.  They ran up and down that hill a few times.  Whew!

And here's what Harlie did while they went up and down the hill...

Just chillin'.

After we walked the park, we ended at the Nature Center, which has fish tanks and otters.  It's an inside building, so it's cooler, too.  Harlie even stood up!  With support, of course.

Cooper, Murphy and Kyleigh

More standing with minimal support!

Harlie loves water play!

She walked down to the end - with support, of course!

Otters are VERY motivating!

Cooper yapping away.
You might be wondering why on earth we let Harlie stand with no shoes on.  Well, we were trying to keep her cool, and we never expected her to stand or walk!  Oops.

So, it turned out to be a great morning.  In the Nature Center I had to tell Jennifer that I was glad that I thought of it (which was totally untrue! It was ALL her!).  It was a lot of work, but it was worth it.  All the kids had a great time and were completely worn out.  It was so great to see Harlie up and "about" some.  I know this cast is only temporary - but I miss all she could do like you wouldn't believe.  I miss seeing her walking around.  I miss seeing her play.  And it was so great to see her enjoying herself - despite that cast!

That's it for now.  Thanks for reading!

Quick Update

Spring Break is not a break when you stay home with three kids.  Just in case you were wondering.  There has been no time/energy for me to blog.  At all.

I only have a few minutes, so I'll just give you a quick update for now.  Harlie is still doing well.  We are now three weeks into this cast.  We have about three to five weeks left.  We have our follow up appointment with Ortho next Tuesday.  Her cast is looking pretty yucky.  In the back the covering has come off and the padding stuff is sticking out.  She's really been struggling with going potty.  She's just not comfortable going in her diaper, and she's not at a good angle for a kid who's potty trained.  Yet she doesn't complain.

Traci (her PT) brought a two-pound weight bar when she brought the stander and walker.  Here she is "working out".

Here she is playing with that aqua sand in the stander.  She asks to play with it, which is great because it gets her standing.  She stands about two times per day, between 40 ad 60 minutes each time.

Her most recent homeschooling session with Mrs. Katie.

On Saturday, Murphy and I went for a two-mile run.  He got new shoes last week (running shoe type) and he said he'd like to run with me.  YAY!  So, there is a 5k in May that is family friendly, so I thought we could train for that.  I couldn't believe how well he did running those two miles!  He ran a steady pace and only walked a little.  And the best part is that we talked the whole time.  It was great in every way!

We ran again on Tuesday (yesterday) afternoon, but it was really hot and I guess he wasn't feeling as energetic.  We ran just shy of two miles and he had to walk more than on Saturday.  But, it was still good.  

On Sunday I ran six miles - my longest run since the marathon in November.  Oh, that is so sad.  But, I am so happy to be running again.  It is very clear that I need that in my life.  So that feels good.  Even if it isn't my best running, I know that I will get back to where I was.  

On Monday night, I was tucking Cooper in bed.  I told him I loved him and he said (clear as a bell), "I love you."  Melt me!  He is talking like crazy now.   

Yesterday (Tuesday) I put Cooper down for a nap.  He decided he'd rather spend that time "playing" quietly in his room.  He unzipped Murphy's beaded pillow and poured all the beads (tiny balls of styrofoam?) out all over the place.  Murphy was sad (because he liked the pillow) and did his best to clean it up to save the pillow.  I, of course, was telling him we just need to throw it away because we will never be able to trust Cooper with it again.  But I didn't throw it away.  Murphy worked for a long time to clean it up.  Tom said he'll fix the pillow so you can't unzip it.  What's the point in providing a zipper for a pillow full of stupid little beads that are impossible to clean up, anyway???  Ugh.

Murphy cleaning up Cooper's mess.

Look at his fingers - there were so many beads.
Later that afternoon...

Cooper was finally wiped out and fell asleep on the couch.  

Today we were supposed to take the kids to the zoo.  But, I'm just nervous about taking Harlie out for the first time and driving that far away.  Well, I'm probably nervous about a lot of things that go with taking her out in public right now.  The whole potty situation doesn't help.  We can't take a bedpan out in public with us!  Plus, there are just too many logistics involved with that.  And I'm completely void of the energy for those kind of logistics.  Between trying to run and having the kids home for Spring Break, I'm beat to the core!  So, we are going to start with a park closer to us.  That way if she's too uncomfortable, coming home early won't be that big of a deal.  

So, I have to go and get ready for that.  Thanks for reading.  And thank you to everyone who has provided a meal to our family!  We have been so well fed these past two weeks!  

Thank you!

Friday, April 15, 2011

Random Stuff

It's been a busy week.  Harlie's spirits are still great.  The only time that she has trouble is at night, going to sleep.  If she falls asleep, she soon wakes up crying and she obviously can't get comfortable.  I'll go in there and she'll be on her back and she'll want "up".  So I lift her more on her pillow, and put her on her side.  She'll appear to go back to sleep.  I'll get back in bed and just fall asleep.  And 10 minutes later it all happens again.  Over and over.  Until we give her some pain meds.  Then she's fine.  I was just hoping to wean her off her pain meds completely by now.

On Monday I went and worked out and did Adrenaline (a group exercise class outside that kicks your butt) for the first time since the fall and then I came home and did yard work.  That was probably a really bad decision.  While I was working in the yard I pulled my back in a funny way and it has hurt ever since.  Needless to say I was sore from working out for days and then to combine it with my back aching, it's been horrible.  And so not convenient considering I have to lift Harlie.  The worst is when she's in her bed at night.  The way you stand at the bed and have to lean over to lift her is the worst.  At this rate, it will never heal.  I really need to figure something out.

Anyway, back to her - she's been going into the stander several times a day for up to an hour each time.  As of right now, I don't see her standing willingly without the stander, or walking as long as she's in that cast.  I don't know if it's still a pain thing, or if she's scared.  Without the stander she won't put her feet down.  Hopefully the stander will help her gain some strength and confidence.  And maybe soon she'll realize that standing has its benefits.  She can only play with Aqua Sand if she's standing (thanks to a wonderful neighbor!).

That is some crazy stuff.  It really is completely dry coming out of the water.  Anyway, in the tray on the stander is a well for water play.  She will stand there for a long time and play with that.  She loves it.  She doesn't try to make anything, she just likes scooping it from one place and dumping it somewhere else.

And I am happy to say that we've been able to turn off the TV for hours at a time with no argument from her at all.  She plays with all kinds of cool gifts that she's received from wonderful friends and family.  Let's see... she's colored, played with one of those magic pens that reveals hidden pictures, played for hours with fuzzy colorful pipe cleaners, found hidden pictures in a Highlights books, memory games, Light Bright, and more!  Jennifer got her a bedside table that tilts, so that's been extremely helpful for a lot of these activities.

This afternoon the boys went outside to play and she signed that she wanted to go, too.  So, when Tom got home and we finished dinner we went for a little walk.  We put her in the wagon and walked down the street and visited with some friends.

While we were chatting Harlie wanted to be held the whole time.  I think she wanted to see what was going on, and from the angle that she lays, she can't see that much.  But, she is so heavy.  It is hard to hold her for more than a few minutes.  She saw Cooper get in one of those cars with the door that opens and she signed car and wanted to get in, too.

There is no getting her in there.  Break my heart!

Since we ran into some friends, we were later getting home than planned.  And then I realized that I never fed Harlie.  Oops.  In the past, I would have just tube fed her.  But, she's been doing so great eating that I didn't want to do that.  So, I fed her while Tom got the boys bathed and ready for bed.

She ate great today, so to meet our goal of 30 ounces per day, she only had to eat a few ounces more.  So halfway through her feeding (when I knew she had reached her goal) I asked her if she wanted more or if she was all done.  And if you can believe it - she said MORE!!!  Whoa!!!!  So I fed her until she said she was all done.  And she ended up with a total of 35 ounces for the day.

I really hope that will start to happen more and more.  It would be awesome if she could be more in control of her eating - but in a normal way.  I would imagine that it would make eating more enjoyable for her if she knew that she could stop it when she was full.  So, we're keeping our fingers crossed that this is the beginning of a new normal!

Oh, and Harlie's getting a new tooth.  One of the bottom ones that she lost during her spinal surgery is already coming in.  I suppose that must mean that it was already a little loose prior to surgery.  Of course, I'm a little nervous about a permanent tooth coming in come in so soon.  I know she has oral surgeries in her future - no matter what we do (she has all her teeth in half the jaw).  But her having permanent teeth are so... well, permanent.  No pressure there.

Spring Break is next week.  Surprise!  We're not going anywhere.  We've decided that we are having so much fun here, that we're staying!

Actually, Jennifer (one of Harlie's nurses) is organizing a trip to the Richmond Zoo.  I've never been.  But, if the weather is cooperative (not too hot) then we're going to try to go and take the kids (her 2 kids and my 3).  If it is too hot, then we're going to try to take them to a movie.  I am so glad to have someone else's energy to help me get them out of the house.  I just don't have it for that kind of outing.  If it were up to me (considering I don't like to plan anything) we would do nothing.  And not because that's what I want to do.  Okay, so maybe I would like to do nothing for a week.  But, Monday would come with no plans for the day and it would slip right by.  And that would happen every day.  I'm just so tired!

But, since we are blessed with wonderful nurses to push me when I need it, we'll go and do something.  We'll probably take them to a park.  I'm going to feel bad taking Harlie to a place where she can only watch other kids play.  But, I'm going to feel bad if I don't let the boys have fun.  And they simply cannot stay in the house everyday for a week!  We'll all lose our minds for sure then!

I forgot to mention that Cooper's vocabulary has just blossomed these past few weeks.  You might remember me telling you that he would not say "Daddy".  Well, his Grandma got here right before we left for Harlie's surgery and 30 minutes into her stay he was calling her "Geema".  Well, I'm happy to report that he now says Daddy.  And I need to get a counter to count how many times a day he says "Mommy" because I'm pretty sure it would break some sort of record.  Some days I want to run screaming from the house.  Oh, how I love that boy!

Anyway, I'm also happy to report that he no longer calls Murphy "Ben".  He now calls him "Urpy".  And he'll say, "Where'd Urpy go?"  So, he's speaking a lot more, which is great!  Of course, his eating habits are still atrocious, but I guess it's one thing at a time.

There's more, but this is all I have the time for now.  It's been another busy week with lots of visitors bringing us wonderful food.  We are so blessed to have so many great people in our lives!

Thank you!

Monday, April 11, 2011

Lots of Stuff

It is so hard to believe that tomorrow will be two weeks that Harlie's been in her cast!  It has been BUSY!  We've had lots of visitors, which has been wonderful.  It's really amazing how many good people are in our lives - and we are so thankful!  And well fed!

We've also been busy figuring out what works best with Harlie and that cast.  I think it's safe to say that we're doing well.  She's been using the bedpan without any issues.  And we've all had enough practice that we can do it alone now, which is great.  Her spirits are up and she appears very happy and always in a good mood.  Which totally flabbergasts me.  I jokingly told Tom that I'm a little concerned because she's SO happy that I'm afraid she might have lost her mind!  

Why is she so happy?  The only thing I can think of is that she gets to watch all the TV that she wants.  I think we might have to start making an activity schedule for this week (clearly I can't leave well enough alone!)  But I am so sick of having that TV on so much!  I think we'll need to do book time, painting time, school time, etc.  Now that I know she's not in pain (and clearly she's happy) it will be easier to start to expect her to do something other than watch TV.

She's also eating fantastically and is now averaging between 25 and 30 ounces per day orally - and 0 through the tube.  I can't believe that she has not been tube fed in over two weeks!!!  We still use the tube everyday for water and meds.  But I never expected her to be doing so great with feeding.  She even asked to eat breakfast on Saturday!  CRAZY!  

On Thursday, Jennifer borrowed a friend's wagon for Harlie to use to be able to go outside.  It was the perfect day for it, too!

Jennifer asked her if she wanted to swing, and she said yes.

Me pushing Jennifer and Harlie on the swing.
It might not look like she enjoyed it, but she did.

After that I went to Murphy's school to have lunch with him.  It was our turn to be "parent of the week" - perfect timing, right?  We had to pick a day to come in to spend 20-30 minutes in class reading to them or sharing an experience, culture, or whatever.  I stressed a little over it because I was really tired last week and I had no idea what I was going to do.  Oh, and I think a whole bunch of 6 to 7 year olds could be intimidating.

Murphy gets to pick one friend to come to the parent table and J. is who he picked...

Me, J. and Murphy.  
After lunch, it was time to head to the classroom.  I am so mad that I forgot to get the teacher to take a picture.  It was actually quite cute.  And it was VERY enlightening.  I will no longer worry about Murphy in school.  His behavior seems to be completely normal!

So, I decided to talk about/teach some sign language.  The kids seemed very interested and most just kept their hands raised the whole time so they could ask how to sign a particular word.  Most asked for normal words, like cat, dog, lion, etc.  One kid panicked when it was his turn to ask and he looked around the room and then said, "how do you sign curtain?"  Yeah, I don't know that one.  One asked how to sign armadillo.  Really?  Kids are funny.  And then it went down hill.  One kid said, "I know a bad word in sign."  Ugh.  So, I said not to sign it and pointed to another boy who had his hand raised.  Then he said, "I know what this means" and his hand was like this:

I said, "That's the letter F" and then he pointed to the three fingers (one at a time) while he said "A. S. S." and then pointed to the thumb and index finger and said "hole".  Nice.  First grade, people.

Well as you can probably guess, that ended the sign language portion.  So I grabbed Skippyjon Jones and started reading.

Overall, it was a really good time.  And very educational for me.  Now I know how to say "ahole" in sign.  That's really not how you do it, by the way.  At least, not that I saw when I looked it up when I got home.

Then, Mrs. Katie, Harlie's preschool teacher, came over for her homeschooling time.  I really think Harlie enjoys that hour.

Then on Friday morning, Tom's mom (Maryann/Grandma) left to go back to Pennsylvania.  We were so glad she stayed another week after we got home.  It was really good for Harlie to see her that much.  Usually Harlie doesn't get to see her much since she's here when Harlie's gone.  And she was such a big help during a very busy, getting back into the groove kind of week.  We are so thankful for all she does for us!
Grandma and Harlie.

Jennifer got Harlie that cloud pillow.  It is a wedge thing and
works perfect for keeping her from sliding down too far.
Then Traci (Harlie's PT) came over to bring us some equipment to use.  She brought a stander to help her put some weight on her legs.

Traci, Harlie and me.

Brandy, Harlie and Traci.

Once she got over the initial fear of what was going on, she didn't seem to mind it that much.  She stayed in it for a few minutes.  We're thinking that once she is more pain-free she will actually want to stand to take some pressure off her back.

Plus, she's gotten some really cool gifts this week from friends and family, and standing like this would make for better playing.  So, we're going to work on that this week and see what she can tolerate.  Traci also brought a larger walker for her.  I don't think we'll be doing that one on our own, but you never know.  I'm going to let Harlie lead the way on that.

Another good thing about this week was that - despite it's busy-ness - I managed to get in FOUR short runs!  I'm slow.  Really slow.  But I'm hoping that it won't take that long to get back to my old endurance and pace.  Honestly, it just feels good to be running again.  Hopefully I can keep it up!

Well, that's it for now.  More later!