Big Development!

On Friday night we had our Daisy Troop meeting.  I am happy to report that we have a Leader!  And I am VERY happy to report that it isn't ME!  Thank you very much Lynda R. for stepping up to the plate and leading this troop for us!  I am, however, her assistant.  Which will be fine.  I am actually looking forward to it!  We will meet twice a month beginning in January.  I really hope that Harlie likes it.  And I am still Cookie Mom.  Which, I hope will work out without too much stress.  So, mental note - if you want any Girl Scout cookies, you know who to call!  

On Monday, Murphy came home from school feeling crummy and complaining of a sore throat.  His voice was awful!  Well, to be totally honest, he sort of was like that Monday morning.  But we made him go to school anyway because he didn't have a fever.  We told him to try not to talk.  But, Monday afternoon he wanted to sleep and was clearly not feeling well.  He didn't even want to go to Cub Scouts - so that told me he really didn't feel good.  

Late Monday night I heard from our nurse, Terri, that she couldn't work on Tuesday because she was having car issues and needed to take care of that.  Total bummer.  Because that meant I would have two sick boys at home, which meant there was no way I could take Harlie to school.  So my only "healthy" child would have to stay home, too.  It really kills me when she misses school because of nursing.  

But there's no way around it.  It's not like I can call the agency at 8am and ask for a nurse for the day.  Even IF there was one available, I couldn't leave Harlie in his/her care with no training.  And let's face it - people have to miss work from time to time.  Even nurses.  It just sucks that it means that Harlie has to miss school - especially when she needs every second of education she can get.  

A friend of mine said "it sucks being a prisoner to nursing."  And that is so true.  The fact is that we simply could not live without it.  While it is "nice" to know that Harlie has an adult looking out for her all day since she's basically non-verbal - it would be much better for her to be a typical little girl who could go to school, ask the teacher for help when needed, and then come home and tell me about her day.  

Anyway, Terri worked really hard to rearrange some things so she could go to school with Harlie today.  And I was so appreciative!  At least our nurses know that even though we wish we didn't need them, we appreciate all their hard work and dedication to our family.  

And - both boys went back to school today, too!  Woohoo!  It was a fabulous moment when all my kids were somewhere else where they were supposed to be - at school!  Even though Murphy is still sporting a raspy voice, he was happy to go.  

So, the main reason why I wanted to blog tonight....  I think we have officially turned a HUGE corner in the Holton Household.  Drum roll please....

Harlie told me that she was HUNGRY today!!!  And then she sat and ate her entire meal (pureed Ham and Cheese sandwich, pears and cherries mixed with a little vanilla yogurt and 5 ounces of Pediasure) without even ONE refusal.  And she even self-fed some bites of the fruit!  

I just couldn't believe it.  She pointed to her belly and so I said, "Are you hungry?"  And she said (verbally) "yeah." (She can't say S's). So I signed "hungry" and then she signed it.  Then I got her Talker (which, by the way, she also asked for today when she got home from school - another big deal) and she used it to say "I feel hungry."  

Hallelujah!

For real.  

I felt that this was happening recently (her being hungry) but it has never been so clear as it was today.  When it happened last week, I doubted my understanding of her - or I doubted what she was trying to communicate to me.  But, there was no doubting today.  Nope.  She was HUNGRY!!!  And then she ATE!!!!  With NO fighting!!!  

I don't particularly enjoy feeding my 5-year old like a baby on soft foods only, but when she refuses and it's a battle - I HATE it.  So if she would just willingly eat her meals on a fairly regular basis, it would make a big difference in MY quality of life!  And, honestly, feeding has been going really well these last few weeks.  She still refuses some, of course, but for the most part, it's been going well.  So, I can't help but wonder how long she's been feeling hungry.  

Another bonus to her being hungry, is that maybe she'll tell us when we forget to feed her.  And I know that makes me/us sound horrible.  But, yes.  It's happened once or twice.  But, let's face it - life is busy and typical kids DON'T let you forget to feed them!  

So, hopefully this is a developmental milestone that is here to stay!  I wonder if it has anything to do with being in kindergarten?  

Honestly, I can't believe the progress she's making.  Some days are hard.  Like when I hear other moms talk about their 5-year old and the conversations they have and the things they tell them about their day at school.  But then, there are days like today, when I am SO grateful for something that most take for granted.  And I can see the progress - clear as day.  I have to try to not compare her to her peers.  But that's difficult to do when this world is so competitive.  

But, here's what I've seen progress since September:

She's more affectionate.

She's way more verbal.

She told me she's hungry.

She can write all her letters and numbers (but some of them might look funny).

She willingly (and happily) does her homework (writing assignments).

She draws pictures (rainbows especially).

She tries to walk up/down stairs using alternating steps on a regular basis.

She can blow a horn/whistle.

I think that's a lot of progress in just three months!!!  I am so proud of her!

And since I haven't posted pics in a while, here are a few random ones...

Harlie being silly a few weeks ago.

Cooper, just because.

Me and Harlie at the park weeks ago.

Harlie and I at the pumpkin patch (obviously) in October (obviously).

Okay, that's it for my rambling for tonight.  But don't worry - there will be more soon enough!

Thanks for reading!
~Christy

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!
~Christy

Eating Update

Sorry it has been so long since my last post.  I've just been in a funk the past month, and writing has not come easy.  I really don't like to blog when I'm feeling down.  A part of me says that I should, because that's my reality.  And writing to you is my therapy, so it would make sense that I should blog even MORE when I'm feeling down.  But I just don't feel it.  And worse - I can't stand reading the posts I wrote when feeling down.  They just sound so whiny.

Anyway, I am happy to report that Harlie is doing much better with her eating.  During feeding therapy last Thursday, we talked about new strategies.  I know we need to keep trying new things to see what works.  But sometimes I just get tired of it all.  I just want her to eat so I can have some energy for other things that are important, too.  Like just being her Mom.

I think that's the thing that makes me most sad - and has been a huge contributor to why I've been in this funk.  It is so hard to just be her Mom.  And have fun with her.  When I have to make her do stuff she doesn't want to do - all day long (practically) it truly affects our mother/daughter relationship.  I try very hard not to take her walking to the bus in the mornings without so much as a wave good-bye, personally.  I receive no response to any of my "have a good day's" or "I love you's" as she walks out the door.  Grrr!

And I won't say there is no making her.  But it takes time.  Lots and lots of time.  For example... her hearing impaired teacher makes her students acknowledge her when they walk into her classroom.  I think that's great.  Harlie doesn't agree.  She can be SO rude!  Last week she did not want to say "hi" to Mrs. S.  So, she shut the door to the class and left Harlie out in the hallway.  She would wait a little while and open the door and (acting as if she was seeing Harlie for the first time) would say, "Well, hello Harlie!" and Harlie would try to come in without saying hello.  She shut the door again.

This went on for TEN minutes!!!!  Finally, Mrs. S opened the door, exclaimed "Well, hello Harlie!" and Harlie begrudgingly - and with bare minimum effort - waved hello and stomped past her into the room.  Oh, that girl is so stubborn!!!

Back to her eating... I don't know why she started to eat better after therapy.  Therapy itself was one of her least cooperative.  And we talked about taking a week break from all oral feedings.  As much as I want to take a break from it - I don't want to!  Something about going to get the can of formula.  It just makes me feel so guilty.  I don't know why.  I know either way - tube or oral - can or homemade - I am doing the best I can for her.  

And it's as if Harlie knows it.  She brings me to the edge and then has a great feeding to keep me from falling off.  And right on cue, the rest of the day (Thursday) and then every day since, she has been great!

And as an added bonus - Harlie and I had a great weekend together.  Tom went out of town to see a hockey game, so it was just me and the kids.  On Sunday, Harlie was more affectionate to me than ever!  It was so wonderful!  And she laughed more than usual, too.  It was just a great day.  And I can't help but think it had something to do with the major decrease in our "fighting" over eating.

So, I'm going to try to do what we can - while maintaining happiness.  And If I have to tube, then I'll tube.  And not feel bad about it.

In other news:

Today they canceled school for inclement weather.  I know they are just trying to keep everyone safe - but I'm betting they are regretting that call.  It didn't start sleeting until late afternoon.  Granted, it was icy, but the kids would have been home long before that happened.

And Tom is sick.  Most likely, it's the flu.  I've never seen him feel this bad.  He rarely gets sick.  And when he does it lasts for like 24 hours.  I really hope I don't catch it.  Because I am exactly opposite.  I get sick often and it usually hangs around for a while.

So, between the kids and Tom, Brandy and I worked our butts off today!  And we saw Despicable Me at least two and a half times (while we were working of course).  Which is fine by me, because I think it is my favorite of all kids movies.  Harlie got it for Christmas and clearly, Cooper has seen it too many times.  He tries to say some lines before they do.  And he is trying to say "oh yeah" like Vector does - complete with the arm motions.  I must try to get that on video!

Speaking of Cooper, he said his first sentence (other than "I want milk") the other day:  "Mommy, Harlie not sharing Buzz!"  I about fell over!  Jennifer had just walked in the door with Harlie, when Harlie picked up Buzz and walked away.  Cooper spoke and Jennifer and I looked at each other in total shock.  I'm glad she was there so I know I heard it!

Speaking of speaking, Harlie is getting a new speech therapist soon.  We took December off from speech therapy.  I had to lighten our load a bit for the holidays, so that's just the way it worked out.  We were having to leave early from therapy each time anyway to pick up Cooper from school.  We are going to start to see someone at Harlie's physical therapist's office.  The time works better, I think.  Same day, but we'll see her after PT. Hopefully that will work out okay.  I am anxious to see how she does after such a long break.

Well, that's it for now.  As always, thanks for reading!
~Christy

Feeding Therapy

Last night at dinner she refused almost every single bite.  It is a true battle.  And I don't want to fight her anymore!  She seems to swallow comfortably.  She's not sick, so I don't think her throat hurts or anything like that.  She refuses all food offered equally, so it's not a taste thing.  So, it's a control thing.  She gets no reward from eating orally, and she's probably tired of being forced to do a whole bunch of things she doesn't want to do.  So much of me can't blame her.

But I want her to eat!!!  I want her to gain weight.  I want her to be as "healthy" as she can be.

We had feeding therapy today.  We tried something new.  I left the room and watched the session from the viewing room.  That was weird.  But neat at the same time.  There is a camera in the room and in another room down the hall there are all these tvs and phones.  I can hear and see what's going on during the session.  And if I want to talk to the therapist, I just pick up the phone and she can hear me.

Harlie definitely refused some bites.  But she didn't push the spoon away like she does with us at home.  Allison just waited her out and sat there with the spoon for minutes at a time, until Harlie realized that nothing was going to happen until she took the bite.

At one point, I had to go in to suction her.  Feeding was going pretty well prior to that.  And as soon as I entered the room, she went back to refusing the bites.  After I left, she went back to eating.

Another thing - at home we have to suction A LOT during feedings.  Most of my SN moms would fear that means aspiration.  But, I know it is completely behavioral.  She makes herself cough to stall the feeding.  We have to put down the spoon, turn the suction machine on, suction, turn the machine off and then pick up the spoon again.  A week or so ago I started pausing the TV every time she coughed or needed suctioning or refused a bite.  Watching a movie/show like this is agony!  Not that I'm watching, of course, but I don't see how she could possibly enjoy the show like that!

Well, during this session she hardly coughed at all.  And I only suctioned once, and it wasn't even necessary, really.  UGH!  That girl KILLS me!!!

After this session, it is pretty clear that my presence changes her behavior - and NOT for the good.  And, I gotta be honest here - that hurts.  And as much as I would love to make myself disappear for every feeding, that just isn't going to happen.

So, we trudge forward.  She is completely capable - in every way - of eating orally.  We have to let her know that she is not getting control of this.

So...

No more discussing her feeding or her behavior in front of her.
If we have a hard day in battle, and I don't feel I have the patience for oral feeding, then I tube her that night.
We wait.  We wait her out for her bites.  Please God grant us patience for this momentous task.
We go back to smooth purees to take texture preference out of the equation.

Oh, the joys of special needs.

On a positive note, we weighed her today to see if all the calorie boosting we've been doing has had any impact.  And it looks like it has!  She gained a little more than a pound since December 1st.  So, that's a relief.

And I had lunch with my friend, Heather.  That was much needed girl time.  As usual, we had a great time with lots of laughs.  Thanks, Heather!

Tomorrow is Christmas Eve.  And with any luck we can enjoy most of the day.  Not sure how feeding her will go.  Grandma and Pap Pap are coming tomorrow.  We are so looking forward to having them here to celebrate Christmas with us!

Please wish us luck with this feeding thing.

Thanks!
~Christy

We have a date.

Ahhh, another date.  Haven't had one of those in what - five months?  Well, it was a nice stretch.

March 28, 2011.  Spinal Fusion Surgery.  In DC.  Be there or be square.  Just kidding.

But the best part is that this surgery requires THREE pre-op appointments - all in Northern Virginia.  Cardiac pre-op, anesthesia pre-op and surgery pre-op.  And none are on the same day.  Nice.

I really need to look into a mileage reimbursement program.

So, back to feeding for a moment... I talked with Brandy and we came up with a plan to give me and Harlie a break from feeding.  She will feed Harlie breakfast, lunch and an early dinner and I will give her a snack before bed.  Basically we switched her snack and dinner.  If I choose to give it to her orally, great.  If not, I'll tube it.  Tonight, I tubed it.  We went all night with no anger or tears.

Last night I forgot to mention that I was so angry with her/the situation/Goldenhar Syndrome/God that I had to go to CVS and the grocery store to try to clear my head.  It was late.  It was COLD.  And I HATE to run errands like that.  And honestly, the trip wasn't even necessary.  Well, I suppose it was given the situation, but you know what I mean.  Tom put her to bed while I was gone and I didn't even say goodnight to her.  I'm not proud.  But I was mad and needed some time away.  Tonight was a better night - for all of us.

And Murphy had a great night - we got notice that school has already been cancelled for tomorrow due to the prediction of 3 to 5 inches of snow tomorrow.  Still not a flake to be seen.  I don't even think it's due to start until late morning - like 9-10am.  Crazy.

As always, thanks for reading!
~Christy

Feeding and how I feel about it.

Tonight was the worst feeding session - EVER.  I can't put into words how incredibly frustrating it is.  She must be the MOST stubborn little girl that ever walked this planet.  Sometimes I think, "she's met her match with me."  But sometimes, like tonight, I want to GIVE UP!!!  I don't think it helped that I spent several hours of my day today pureeing food for her.  The amount of time that it takes to puree her food, freeze it, then prepare it prior to each meal by boosting it again, fine tuning the texture, etc. is incredible.

Tonight I wondered how much more time I would have for other things if I didn't have to do any of that.  If we just went back to tubing every meal with already prepared cans of formula.  Oh, what I could do with all that time!!!!!

And I thought, "I can't do this anymore.  I don't WANT to do this anymore!!!  I hate Goldenhar Syndrome and I hate that her jaw had to be this way."

But I don't have a choice.  As much as I want to quit - I can't let myself give up.  I just can't.  I hate the way it feels when a feeding goes badly.  But I think I would hate the way I would feel if I gave up, even more.

It just sucks to feel this way.  To be so conflicted in my feelings.  When feedings go this bad, I can't help but think it's causing more harm than good.  That I'm going to damage her by making her associate negative feelings toward all eating and oh what is that going to do to her down the road???

But quit because her behavior is bad?  When I think about that as an option - I hear this conversation in my head:

Harlie:  Mom, why didn't you teach me how to eat when I was younger?  Then it wouldn't be so hard for me now.

Me:  I tried Harlie.  But you were awful.  You blocked the spoon with your hands, you covered your mouth, you turned away, and despite everything we tried, I just couldn't do it anymore.  It was torture for the both of us and it had to stop.

Harlie:  But, Mom - I was FOUR!  Who let's a four year old make that kind of decision?  You were bigger than me - couldn't you just make me eat?

Me:  HAH!  No.  No, sweetheart I couldn't make you eat.  No one could make you eat.  You were very stubborn.  And I was tired of the fight.

Harlie:  Well, thanks a lot, Mom!  Now I feel stupid hanging out with my friends when they eat and I have to tube myself.  You're a terrible mother and I HATE YOU!

See?  So, how can I quit?  I CAN'T!!!

And when I want to scream "THIS SUCKS!" I remember how it used to be.  Before she ever swallowed her first bite.  And then I read my post from that memorable day when she finally did.  And I think to myself, "How can I complain about this when she's EATING!?"  We've come so far.

I just need to hold on until she finally gets that I'm not going to give up.  I just pray that it is soon.  Very, very soon.

Thanks,
Christy

Some Updates

Sickness struck our house a little more than a week ago.  I don't know who got it first - Tom or the kids.  Runny noses are everywhere!  And despite all efforts to avoid catching it myself - I did.  So, now I'm sick.  And colds kick my butt.  Run 15 miles in pain, sure!  Live with a sore throat - please no!!!

And Harlie and Cooper's ears have been questionable.  But no fevers.  And they are playing like all is well.    So, I didn't think going to the doctor would do much good.  Although, Harlie really needs a follow-up appointment with her local ENT.  I just haven't scheduled it.  It's been such a busy time and we see so many people as it is.  I know I should have called by now, but I just haven't.  It sounds so different when I write it - in my head I can totally see why/how I haven't called.  Sometimes I just get so tired of appointments.  And she must, too.

I have a lot to write about so, I'll just write as I think...

Dentist
Last Thursday (the day I wore my slippers out in public) Harlie saw her dentist.  For the most part, her teeth look okay.  But there is one tooth that has some spots.  Her dentist said that it isn't a cavity - yet.  So, we need to watch it really closely and if it changes at all, we need to see her again.  She said that if it does become a cavity, they will have to pull it, under sedation, of course.  She said they don't take any chances with cardiac kids - so no repairing baby teeth for sure.  I have no idea what they do with permanent teeth.  There are some questions that I'm not ready for the answers.  

I have heard thin enamel can go along with Goldenhar Syndrome, but she said her enamel looks okay for now.  I've also heard that not eating orally can really mess up the normal bacteria balance and health of the teeth.  And I'm thinking that all the years of throwing up - daily - didn't help, either.

Hopefully, we've stopped the progression of the cavity.  Apparently that can happen.  So, I'm crossing my fingers.  Although, she's going to need teeth pulled for sure anyway.  She's got a lot of over-crowding on the bottom due to her jaw being so small from the get-go.

Feeding
As fabulous as she was doing with eating orally, she's taken another turn for the worse.  We've gone through so many ups and downs with her behavior during feedings.  Just when I think we've come through and made some serious progress - things go bad again.  It is so frustrating.

I am wondering if she has a sore throat, too.  Maybe it's her cold that's making it uncomfortable to swallow.  Or maybe it's her cold that's making her not hungry.  Or maybe it's a sore throat and the gritty texture of the food.  Or maybe we went too gritty, too fast and it has nothing to do with her cold.

If only she could tell me what's going on and how she feels.  And why she doesn't want to eat.  At all.  For a little girl who is so darn smart - why oh why can't she communicate her pain to me???  She doesn't ask questions, and she doesn't answer them.  It just makes me sad.

Cooper
The weekend of Thanksgiving, Cooper graduated to a big boy bed.

Well, I suppose I should say a "big boy mattress and box spring on the floor".  No actual bed frame - yet.  Tom wants to build something.  But, Cooper loves it!  I was a little worried.  Cooper tossed and turned in his crib.  I thought he would have a hard time staying put.  And he still woke up crying a lot of nights.  So, I thought he'd get out during the night, too.  But, he's only fallen out once, that first night.  And he seems to sleep very soundly now - with a lot less tossing and turning - and no waking up crying!  He must be so much more comfortable!

He's also loving preschool.  His preschool has curbside drop-off and pick-up (best idea, EVER!) and his teacher came to the door the other day and he exclaimed, "YEAH!" when he saw her.  It was so cute!

And he's been quite the challenge with the Christmas tree.  He's broken more ornaments than I can recall.  And I'll find some in another room.  But, it appears he adds to the tree, too!   The other day I went to plug in the lights from the mantel.  I wanted to find a connection in the lights, so I got real close to the tree and started looking closely.  And I found this...

Here's a closer picture...

It is the filter to Harlie's suction machine.  I just switched it out the other day.  So, this one must be the old one that he got his hands on before I could throw it away.  And, of course, I completely forgot about it once it wasn't in my sight anymore.

So, he removes actual ornaments, but puts trash in our tree.  Secretion-related trash.  In our Christmas tree.  We're so classy here in the Holton household.

Well, it is very late and I really should be sleeping.  So, this will have to be it for now.

Thanks!
Christy

Nutrition Appointment

Today Harlie had a nutrition appointment.  Her last appointment was August 26th.  While she is doing FABULOUS with her feeding - she LOST a pound.  Lost a pound!!!!

But her nutritionist said that she grew in height two centimeters.  So, that's good.  But, I'm not happy about her losing weight.  A pound doesn't sound like much.  But, for her - it is a lot.  And with all the feeding that we're giving her - with some calorie boosting (adding whole milk, heavy cream, cheese, butter, syrup, mayo, etc. to her food) the fact that she lost weight isn't comforting.

One of my questions for the nutritionist when we went into the appointment was if she was ready to ditch the Pediasure and make the switch to whole milk.  Instead, she needs to go to an even stronger Pediasure!  Total Bummer.  She's just burning way more calories than I can give her.  She's very active - so that's good.  But, I also know that her breathing and her heart beating burns more calories than the average kid.  Ahhh, another one of those friendly reminders that my kid has medical challenges.

She weighs 30 pounds.  She is 37.4 inches tall.  Our daily volume goal (the total amount of food plus Pediasure per day) was 35 ounces, which she achieved most of the time (I'm guessing 8 out of 10 days).  Now, her goal is 40 ounces - with the boosted Pediasure and I am going to have to be more diligent with calorie boosting ALL her food.  I've been boosting - but haven't been measuring it exactly.  I just eye-ball it when I make her food by adding a little bit of this, a little bit of that, etc.

I know she needs the extra calories, because there is no way I could increase her volume to match what she would need in a day.  But, some of the calorie boosters just make me sick when I think about putting it in her body - like Parkay liquid margarine.  Ugh.  I'm really sorry if you're a fan - but something about that totally grosses me out.  Just like it totally grosses me out to puree eggs and tuna fish.  Not necessarily together.  I've done eggs - ICK!  But tuna fish??? Um, no.  Can't do it.

So, I have a list of other calorie boosters (heavy cream, sweetened condensed milk, powdered milk, salad dressings, sour cream, coconut cream, oils, etc.) that I need to go and get and keep in the house to add to all of her food.  And then I just have to hope I don't clog all of her arteries and make her heart work even harder than it already is.  Her nutritionist said she will be fine with calorie boosting for a few years without doing damage.  Let's hope so.  But that's just the thing in the medical field... everything is a constant balancing act.  What's good for one body part is bad for another.

I was feeling pretty bummed about her losing weight when we left the appointment.  But in the car on the way to school Brandy reminded me of all the changes since her last nutrition appointment:

1. She's eating ALL her food BY MOUTH!  HELLO!!!  That's amazing!!!!
2. She's walking more than ever - like from the bus to the classroom. 
3. She plays on the playground at school most days. 
4. She's taking gymnastics once a week.
5. She's in physical therapy once a week. 

That makes me feel better.  She's increased her activity like crazy, which is GREAT!   Now I just need to get ahead of her in the calorie department.

So, I'll leave you with some recent pics of my skinny girl.

You can see how crooked she is in this photo:

As always, thanks for reading!
~Christy

Cub Scouts, Therapy and More!

*Note:  I wrote this post last night, but something went wrong and I couldn't post it until this morning.*

Sorry I've been MIA all week.  Well, for two weeks, really.  Just when I think I'm going to get caught up, I get more behind.  So, I'll just start and see where it takes me.

I'll have to save the Murphy/ADD update for another day.  Too much to write tonight.

Murphy joined the Cub Scouts.  Tom thought it would be a good way for him to learn team lessons (since he's not interested in sports) and we were thinking that maybe it would somehow help him with his school issues.  Can't hurt to try, right?

This past Monday was his first Den (?) meeting.  I have not learned all the right lingo yet.  I know he's a Tiger Cub and they are part of a Den, which is part of a Pack.  And I also know that Tom is now his Den Leader.  hehe  I know, cute, huh?  I also know that we had no business making another time commitment.  But the only thing Murphy does is gymnastics one afternoon a week.  And Tom thought it would be good for him (Murphy) to experience this.  And no, Tom was not a cub scout when he was a kid.

The girl scouts sell cookies (yum) and the boy scouts sell popcorn.  So, if you want some popcorn, you know who to call!!!

Cooper started preschool.  He goes three mornings a week.  The first week went great.  He walked into his classroom and said "bye" to me and went on about his business.  The second week he cried like no tomorrow and refused to enter the classroom.  The teacher takes him and he reaches over her shoulder for me calling "Mommy!  Mommy!" while crying hysterically.  It's quite torturous.  But, the teacher tells me that he only cries for a few seconds and goes on about his day.  He's happy when I pick him up and she always says he does great.  So, I think that's going well.  Hopefully each day he will cry less and less and then all will be well.

Last Thursday was a killer day (aka Therapy Thursday).  I had to run all over town, rushing to appointments.  Harlie has feeding, speech and physical therapies.  In between those appointments, Tom and I met at the pediatrician's office to discuss Murphy, and I had to pick up Cooper from preschool.  I also had to pick Murphy up early from school to take him with Harlie and I to physical therapy.  That way, while Harlie was getting therapy, I could help Murphy with his homework.  At some point during the day (I think it was during PT), someone HIT MY CAR!!  And did NOT leave a note.  Thank you very much, kind stranger.  UGH!  So, now I will have the wonderful inconvenience of having to get it fixed.  Great.  Luckily, I got to end that day with wine with a friend.  Ahhhh, there's nothing more healing than some good wine and laughs with a friend!

On Saturday the 9th, I ran my longest distance yet - 18.74 miles.  Wowza!!!  I ran for over three hours straight.  It was the hilliest run EVER with an elevation gain of 765 ft.   Prior to that run, my greatest elevation gain was 462 ft. during a 10-miler.  It was crazy hilly.  I burned over 1,800 calories (that should explain why I'm hungry most of the time).  And my heart rate averaged 85%.  Not too bad!  I am very proud of those numbers!  The only negatives (other than the hills, of course) was that I got a blister (and it hurt while running) and my IT band started hurting at mile 13.  That sucked.  It hurt like hell that last mile.  But, I took another ice bath, and I've been stretching it a lot.  So, hopefully it will be fine enough for me to finish this thing in one piece.  And then I went and got new shoes (the blister reminded me it was time).  I ran 5 miles on Tuesday night and 9 miles early Wednesday morning, and no IT band or blister issues.  So, that's a good sign.  This Saturday is a recovery week and we are just running 12 miles.  And I don't think they are going to be very hilly (running downhill doesn't help the IT band issues).  So, hopefully I can make it through those with no problems.  Then, on the 23rd, another big run - 20 miles.

On Sunday, Tom took Murphy to Carter Mountain to pick apples.  Last year, the family went.  But, this year, we just couldn't make it work.  There was no way I was going to push the double stroller up or down the mountain the day after my 18-mile run.  No way.  And there wasn't really another weekend that it could work anyway.  So, Tom took Murphy to breakfast and then they went and picked a ton of apples.  I did as little as possible while they were away.  But, I had Harlie and Cooper, so I didn't exactly rest.

On Tuesday of this week, Harlie had her 4-year old well check appointment.  That went fine.  Except she had to get five shots.  Oh, she was not happy about that.  But she remains in the 5th percentile for both height and weight, so that's good.  And she would be taller if it weren't for her vertebral issues.  At any rate, tiny as she is, she's doing great.

Today was Therapy Thursday again.  Oh, this day of the week wipes me OUT!  I know it may be hard to understand, but sitting there for therapies is exhausting!  I find myself willing her to do whatever it is they want her to do and that is very draining.  But, she's doing really well, I think.

Allison (her feeding therapist) gave her a soft piece of popcorn wrapped in mesh today.  Harlie didn't want any part of it.  But after some time she finally let her put it between her back teeth and she bit down on it some.  And she can now eat applesauce without me pureeing it.  The only problem is that she must get tired eating it like that, because toward the end of the feeding she gags on it.  Anyway, it's progress, so that's good.

And she did great in speech therapy today.  She said "Mama Duck" and some other two-word combinations.  Some of the words were only understandable because we knew what she was trying to say.  But, mama duck, I think anyone could have understood.  So, that's exciting.  Honestly, she tries to verbalize a lot.  Which is SO promising!

I had to cancel her physical therapy for today, though, to make room for her ENT follow up appointment.  I just tried to find where I blogged about her last ENT appointment, and it looks like I never did.  I thought for sure that I had talked about how the doc had to use a stainless steel catheter-type looking thing to suck all the ear gunk out of her canal.  But I must not have.  Anyway, yeah, Harlie was NOT a fan of that procedure.  Today her local ENT said that her ear tube is definitely out of her canal.  We are just going to wait and see what happens with her ears before we do anything else.  We are hoping she doesn't get any infections so we won't have to put another tube in.  Unfortunately, she didn't test very well afterwards (hearing-wise) so they are thinking there is some fluid behind her ear drum.  So, she's now on a nasal spray for the next 4-6 weeks to help that fluid drain.  That fluid is an infection risk and it doesn't help her hearing, either.  So, we'll go back in the next 4-6 weeks and see how things look.

I don't know if today wiped her out, or if she's coming down with something, but she was not acting like herself this afternoon.  I hope she was just tired.  Tomorrow morning she has gymnastics and she LOVES it.  I would hate for her to miss it.  Oh, I'll have to talk about that soon, too.  Her coach says she is doing great.  He said she is SO independent and not afraid of anything!  

Well, that's all I have time for tonight.  I really hope I can get back to updating you more regularly soon.  It is really hard to cover this much ground in one post!

Thanks for hanging in there!

~Christy

Feeding Therapy Update

Harlie is feeling better and went back to school today.  Today was Therapy Thursday, but her feeding therapist had to cancel and it was rainy and yucky outside, and I was feeling really crummy and tired, so I cancelled the rest of her therapies and sent her to school.  She finally has a morning bus assigned (I've been taking her to school every morning, except for Fridays, when she takes the bus).  It's confusing because her schedule is different on Thursdays and Fridays.  She goes to school at different times during the week.  It looks like she'll be taking the bus every morning starting next week, which is great.  For one, she loves it.  And for another, it will save me a ton of time every day.  That will be a great relief.

I have a lot to catch you up on, but I'll start with Feeding Therapy for now.

She has been on the waiting list for the intensive feeding program here in Richmond.  The feeding program is considered one of the best in the country and people travel from all over to attend.  Entry into this program has been a goal of ours from very early on.  Well, Harlie's name came up - and as crazy as it is - it turns out Harlie doesn't need it after all.

Seriously crazy.

So crazy, in fact, that it took me a few days to really come to grips with it.  It's just weird.  We've been talking about getting her to the point that she was a candidate for so long - it was kinda hard to accept.  And, this is a GOOD thing.  In fact, it's a GREAT thing (logistically I didn't know how we were going to do it anyway)!  The whole point of intensive feeding therapy is to get the child to eat a variety of foods, and to wean from the feeding tube.

And can you believe it?  We have done both!!!  Now wait... I should clarify.  We haven't completely weaned from her tube - but most days - she reaches her calorie goal - completely by mouth!!!  It's exhausting (for all parties) to feed her four times a day (and sometimes we have to tube her depending on what's going on).  The setting has to be "right."  We have not tried oral feedings out in public yet.  We are going to do that during therapy soon - we'll go into the cafeteria there and feed her and see how that goes.  I'm expecting that to be quite challenging.

So, we are hardly weaned from the tube.  But, we are so much closer than I ever thought we'd be.  And intensive feeding therapy just isn't necessary at this time.  I'm sure there will be plenty of opportunities.  She still has to learn how to handle some texture - and we can't even think about chewing.  Odds are she probably can't chew food until she has another jaw reconstruction to even out her jaw.  Ugh.

I think we would all agree that feeding her is a joyful experience when she's a willing participant.  But sometimes, she wants no part of it.

Nice, huh?

She's been wearing her PMV a lot more lately.  She definitely does better at keeping it on during school than when she's at home.  I know it's because she knows she can get away with it at home.  But, there are only so many battles I can fight at one time.  And I'm thinking the more she wears it at school, and sees that she can make sounds and get some attention, eventually getting her to keep it on all the time won't be a battle.

Here's her saying "dinosaur":

Pretty cute, huh?  You should hear her say "all done."  That is very clear.  Hearing her voice is totally awesome.  The other day, we went outside and she sneezed.  And it was the first time I had ever heard her sneeze - like a real sneeze sound!  It was so darn cute I stopped in my tracks.  I wanted her to do it again.  Talk about enjoying the little things!!!

Okay, that's it for tonight.  I will post some birthday pics soon.  

Thanks!
~Christy

First Day of School!

YAY!  Today was the first day of school for Murphy and Harlie.  The morning went smoothly and everyone got where they needed to be - with time to spare.

This is how I found Harlie when I went in her room this morning...

Here's the three of us getting ready to walk to school...

Here are two silly dads trying to figure out if they were happy or sad about school starting.  Tom is clearly faking his sadness.  And Preston looks like he's come to terms with his emotions...

The first week they let us walk the kids to their classroom.

Back home for Harlie's turn to go.  I decided to let her skip the hearing impairment instruction today for the bus ride.  She was so excited.  I think it was a good call.

Here's Brandy and Harlie.  Harlie was not being cooperative with the pictures today.

Putting the harness on for the bus ride...

Her going up the stairs - all by herself!  I love this bus driver!  She is so nice.  I hope we get to keep her!

All secure for the ride to school...

And a token pic of Cooper just so he doesn't feel too left out...

And everyone had a good day.  It was fun picking Murphy up at the end of the day.  Two of my neighbors have kindergartners, so we all got to be there to get the kids.  It was chaos for a few minutes as all the kids were dismissed.  But fun chaos.  It is nice to get back into the groove again.

Murphy started gymnastics today, too.  It is his very first "fun" activity.  He clearly doesn't want to do anything sports-related - so I thought I could pass this off as not being a sport, but still giving him some exercise.  He seemed to really like it.

On Friday Harlie and Cooper will take gymnastics, too.  Me signing them up all started with Harlie's physical therapist recommending it for Harlie.  Since she has loose ligaments, we should try to compensate by building muscle strength (since you can't do anything about the ligaments).  For example, when she wants to go one direction, and I want her to come with me, I cannot pull her arm with any effort whatsoever.  It totally feels like I'm going to pull her arm right out of it's socket.  It's a really weird feeling.  And she said gymnastics would help with that.  When I was looking at the classes offered, I realized that the boys would probably really like it, too.  So, I signed them all up.  We'll see how it goes for this first session and then go from there.

Tomorrow is Therapy Day.  Harlie has speech therapy, feeding therapy and physical therapy.  Normally, this occurs on Thursdays, but since it is the first week of school, things got moved around a bit.

In Feeding Therapy, a psychologist will sit in on the session to observe Harlie's behavior.  It is atrocious.  I can't believe how this little girl can break an adult into pieces in a matter of a few minutes.  It is now a battle just to get the tray on the high chair.  And now that she's almost four, she knows how to get it off.  Really, we're at her mercy in so many respects.

And it's such a shame, too.  Even when resisting every bite - she ends up eating a good volume - tonight's battle ended with a 9.5 ounce feeding (which is great).  That is clearly the only thing that is keeping me going.

Well, that's it for now.  I must get to bed.  I have an early run in the morning - ugh - 5:30am!!!!  These school hours are killing my training time!

Thanks!
Christy

Updates

So much to say, so little time...

Ear Issues

So, last Wednesday (the 25th) Harlie had an appointment with her audiologist for her regular testing (its been over three months since her last one).  I told her that we've been having some issues with her hearing aid squealing (feedback) at odd times, out of nowhere.  So, she looked in her ear and there is some wax blocking the canal.  She tested her and when she last tested at 2.6, she was .4 this time (my numbers might not be exact, but close enough).  Clearly, the blockage is affecting her hearing a bit.  So, she said that we needed to get in to see an ENT to try to clear it out.

Our goal was to get her a-okay in time for school, which starts Tuesday.  So, Ann helped me get an appointment with a local ENT (Harlie's ENT is in DC, and I really don't want to drive up there for this right now) and we went to see her this past Wednesday.

The ENT said that Harlie's ear tube has come out of her ear drum and, of course, wax has accumulated, blocking her ear canal.  This was Harlie's 3rd ear tube in less than 4 years.  Her DC ENT put it in in November of last year.  It is a T-tube, and is supposed to last longer than the normal tubes.  I asked the ENT why her tubes come out so quickly (none of them have lasted a year).  She said that she must have really thin ear drums and there just isn't enough "meat" to hold the tube in place.  It certainly isn't because she is growing (the normal reason why tubes come out).  Her ear canal is still super tiny, like a baby's.

So, we're putting drops in her ear to try to loosen up the wax in time for our next appointment - on Thursday.  The ENT will try to pull the tube and gunk out in the office.  If she can't, then that means Harlie will have to go to the OR (at some point in the near future), which I would rather avoid.  So, hopefully she can get it all out and get her hearing clearly again.

Nutrition Appointment

Last week (the 26th) Harlie had an appointment with the feeding clinic team.  Overall she is doing great gaining weight.  She weighs 31 pounds, 14 ounces (25th percentile) and she is 36.4 inches tall (3rd-10th percentile).  She gained over two pounds since her last appointment in May - and that includes having heart surgery.  Overall they said that she gained 178% of expected weight gain (so she gained almost twice as much as expected).  And I can see this growth/gain.  Shorts that she could wear at the beginning of summer, she can't get into now.  And I have never seen her outgrow something in one season.  In fact, at the beginning of this summer, she could still wear size 24-month shorts!

Here she is getting measured.  You can see that in order for her to stand straight, one leg has to be bent quite a bit.

And here she is with her feet even on the floor.

That's quite a difference.  And it's a reminder that I must call her orthopaedic surgeon for an appointment!  She wanted to see Harlie months ago.

Feeding Therapy

Feedings were going great until her heart surgery in July.  Once she got home and recovered enough to start oral feedings again, we have been going downhill in the behavior department.  She is eating "well" as far as volume goes - but it is a lot of hard, hard work!!!  And I really feel like I am reaching my breaking point.  I am so close to being ready to throwing in the towel on oral feedings.  I haven't been this "over it" in a very long time.  And if everything else was "normal" and I wasn't using my patience in every other department as well, I could deal with it okay.  But, my patience is already stretched to the limit.

Here's what I mean:

She used to tolerate her HME just fine and wore it all day, with no issues whatsoever.  Ever since her surgery, she takes it off all the time (the HME provides humidity and moisture to the air she breathes and when she doesn't wear it, her secretions get thick and forms mucus plugs - NOT good).  Another benefit to the HME is that when she coughs (this is gross, I know) her secretions go into the HME and not all over whatever or whoever is in front of her.  The HME "covers her cough", if you will.  Well, now she takes the HME off whenever she coughs - which is about a gazillion times a day.  I know this might seem strange - but I think kids with trachs cough a lot more than kids without trachs because that trach is in her airway.

Another negative to her taking the HME off all the time (especially when she coughs) is that she can accidentally decannulate herself (pull the trach out).  Which is exactly what happened on Tuesday afternoon as Brandy was walking out the door to go home.  Luckily she noticed that Harlie sounded "different" and looked closer to see what was going on.  I was on the computer, like any good mom should be.

Brandy told me that she was decannulated and I jumped up and tried to put it back in.  But, it wouldn't go, so I had to get the emergency kit from her diaper bag and start with a fresh trach.  Once Harlie realized what was going on, she was not cooperative in letting me put it back in.  So, Brandy had to hold her arms down while I put a new trach in.  Luckily, she appeared to be breathing okay, so we weren't as scared as we have been in the past.   We were still scared, just not as scared.

So, in summary - this HME non-tolerance crap she's pulling is causing major issues with plugging and decannulation - both things that make breathing difficult.  Whew!  It's a good thing it's not a big deal.  And it is a constant issue.  Truly - a constant issue.  A pull-your-hair-out-go-running-and-screaming-out-the-house kind of issue.  A think-of-a-million-other-forms-of-torture-you'd-rather-endure kind of issue.  Seriously.  I am not exaggerating.

She won't walk any distances - even the same distances she walked prior to surgery.  She really fights the stairs - both going up and coming down.  This produces an agonizing argument every morning and night.  This is one where I have pretty much given in and let her win.  It just isn't worth it to me.  That's not how I want to start off the day, or how I want to end it.  I know I will have to change this - but all in good time.

I know she is capable of potty training.  Okay, I believe she is capable.  But she is not willing.  And no matter how hard we work, if she doesn't want to be potty trained, then she won't be potty trained.  Again, this is a battle in which I surrendered.  We've been working on this for well over a year and I just don't have it in me anymore.  She will do it when she wants to and that's that.  Of course, that doesn't make accepting the situation any easier (on our part, I mean).  I still get my hopes up when we have a good day and they come crashing down when the next day is like the good day never happened.  It is very frustrating.

Communication suffered after surgery, as well.  She went several weeks where she pretty much refused to communicate in any way.  That has definitely improved - but not as good as it was prior to surgery.  The other night I was the most frustrated with her lack of communication skills than ever.  She wanted something from downstairs (as we were getting her ready for bed) and she wouldn't sign or use the device to tell me what she wanted.  For all I know she just wanted to be downstairs.  But, I really don't think that's likely, because she has never wanted to go back downstairs once we've gone up for the night.

So, then I thought she obviously doesn't know the sign for what she wanted or how to say it on the device.  I don't know.  In looking back maybe I should have taken her back downstairs to let her show me what she wanted.  I was thinking at the time that she was probably stalling and I was (quite frankly) super tired and I didn't want to carry her down and then have to carry her back up the stairs.  And she didn't appear to even be trying to "tell" me what she wanted.  And I didn't want to reward that kind of behavior.

Anyway, as you can probably see - there are only so many battles I can fight.

Back to our struggles during feedings... Allison (her therapist) said she is going to ask child psychology to sit in on our therapy sessions for a bit to see if she might have any ideas.  My main fear at this point is that we are making feeding a negative experience for her.   I can only imagine what it's like for her.  From her perspective, this is how I see it:

• She doesn't know or understand hunger - what it is or how to satisfy it.  
• She doesn't appear to be able to actually taste anything.  The only reaction we get from a food is in it's texture or thickness.  So there's no enjoyment there. 
• She has no interest or desire to eat or try what we are eating.  

So, to her - what's the point?  In this way, I am completely sympathetic.  I mean, how can I blame her?  Doesn't that just sound horrible?

And another thing... anytime you hear some "expert" talk about parenting, you hear "consistency is key."  Harlie has three nurses, two parents and several therapists that all have their own way in dealing with her.  We all have different expectations, demands and tolerances.  Consistency is not something Harlie gets to experience - and not for the lack of trying, either.

I am trying to believe that this is just a phase.  She's testing us and learning our/her limits.  If we can just persevere through this difficult phase, she will realize that it's less work to just eat the food without fighting so she can go do whatever she wants to do, sooner.  And if we could just teach her that communication will bring her power and control.  I think that would make such a big difference in her willingness and participation.  And maybe giving her more control in one area, will make her less likely to want it another area.

On a good note... we had open house for Murphy and Harlie's schools today.  Harlie will be in the same class she was in last year, with the same teacher (awesome Mrs. Katie) and the same students.  So, that will be good.

And she will get some good quality language development time with her hearing impaired teacher.  She will see her three times per week for an hour and a half in another classroom, before her class starts, for more direct instruction.  So, Monday, Tuesday and Wednesday she will go to school at 9:30am and will see her HI teacher until 11am, then she will go into class till 2pm.  On Thursday and Friday, her HI teacher will come into the classroom between 11am and 2pm for language development.  I'm hoping that her being in another classroom, with more direct instruction will really help her make some progress in communication.  We'll see...

Murphy seems pretty excited to start 1st grade.  His teacher seems nice and he has a few of his friends from Kindergarten in his class, so that's good.

I am feeling a little overwhelmed over what our schedule is going to be like beginning next week.  Once I have it all figured out (yeah, right) I will try to show you, so you know what I mean.

Okay, that's it for tonight.  It is late and tomorrow is another busy day.  Yay!

Thanks,
Christy

Therapy Day

So, yesterday we had our Day of Therapy.  And I just can't brag about Harlie enough!  She was SO good!!!  She was really cooperative (for the most part) and went with the flow without any real protest.

First we had Feeding Therapy with Allison.  We love Allison.  She has been with us since Harlie was just a wee baby.

Then we had Speech Therapy.  She did well.   She is definitely trying so hard to verbalize everything.  She just has a really hard time with consonants (b she can say).  So the words that she's "saying" are just the vowel sounds.  And some of the vowel sounds she can't produce yet - like "eee" and "aaa".

They have this cool swing that Harlie LOVED.

Barbara (her therapist) wanted to focus on getting her to say some action words.  Since action words have a lot of power, she might be more likely to use them (like go, or stop).  I have a video of her saying "stop" and "go" but it won't upload right now.  So, I'll have to try to upload it later.  

For some reason, she decided she wanted to take her dog to therapy today.  Which was fine by me.  Hey, at least it got her to walk!

And when we got into speech therapy she tied the dog to a pole.  That dog isn't going anywhere, that's for sure!

Then it was off to her physical therapy evaluation.  Traci was Harlie's PT since she was a wee baby.  When Harlie aged out of Early Intervention (when she turned three last September), we changed over to the school system's PT services.  But, according to the school system, if the child can get around without assistance, then they don't need PT.  At first she got PT for 30 minutes once a week, then it was once every other week, then it was as needed.  So, it just wasn't adequate for what she needs.  We missed Traci and it was so good to see her again!!!

She has no arch at all in her feet.  

 She has weak ligaments and that will never change.  Muscles you can strengthen, but ligaments are the way they are.  We were hoping that the ankle braces would help some with her ankles and feet.  And while they help her when she's wearing them, they haven't changed anything for when she's not wearing them, which is unfortunate.  And that means that she'll be wearing them for a really long time.  Bummer.

This was one of her less cooperative moments.

Overall, she totally qualifies for more PT.  Traci said that she will continue to fall behind other kids her age and the gap will get wider, faster.  I think she said that will fall below the 1 percentile for locomotor skills (I think she said she's at 1% now).   That link says that "most children learn to walk at one (Harlie was two), and to run, hop, and jump at two (she is almost four and doesn't do any of those things).  And that they begin to master galloping, skipping, sliding and leaping at about three (again, Harlie doesn't do any of those things.)  Not that I care that much, though.  She can walk and walk fast (her running, I suppose) so I'm happy.  She's happy.  But, later, she might not be so happy about the difference in her abilities vs. her peer's abilities.  Like in Kindergarten.  So, we're looking more long-term here.

We will also look into getting her a shoe lift for one side.  Since her hips are crooked, it gives her a leg length discrepancy, so putting a lift in one shoe might help her.  The faster she walks, the more you can see that she isn't even, so to speak.

So, we will work in seeing Traci once a week.  The only unfortunate part is that she's not close.  But, I really feel that seeing her is worth it.  In other words, I would rather not see someone else closer.  Traci and Harlie have a relationship and Traci knows what Harlie is capable of when she's just being stubborn.  And I think that is so valuable when dealing with her and trying to push her to the next level.  So, we'll just have to figure it out and make it work.

We are going to be very busy, very soon.

Both Brandy and I were pretty much dreading the day.  But, it turned out to be great.  Harlie really seemed to enjoy herself - especially in physical therapy.  And at 7:30, Harlie looked at me and signed "night-night" asking to go to bed.  She was one tired little girl.

Have a good day!
Christy