School, nursing, therapy, etc.

I'm at school again with Harlie today.  Terri is sick.  And I don't have a back-up nurse.  Looks like I'm going to have to do something about that...

Our nurse situation has changed.  As is inevitable, I suppose.  I wanted to hold on to the way things were for as long as possible.  But, Jennifer's job changed, so her hours and demands did, too, making her less available to help us.  And Brandy helps out when she can.  And, Harlie's schedule is more demanding, too.

I get a sense of what it's like to be a single mom, dating.  Wanting to screen the dates and make sure it's a relationship worth introducing to the kids.  Except, I can't.  So, every nurse will meet the kids and it's more and more people they are seeing enter our house, leave our house, help take care of Harlie, etc.  Then they ask, "Where's ______?"  Well, really it's only Cooper who is asking.  And he doesn't understand.

So, that's fun.

I had plans today.  And Cooper's home today.  I have two people helping out with him today. And while I am SO thankful to have my little village of people that are always there when I need them (and you know who you are!!) it makes me sad that I can't be there, being his mom, and spending time with him. And that I can't honor my commitments.  And that I have to be so unreliable.

I will say there is something positive about seeing Harlie at school.  Yesterday I saw her pick up her new lunch box and show it to another mom who was waiting for her child.  She didn't know this mom.  She was just showing off her new lunch box, just like every other typical kid does.  When I am here, the kids come up to me all the time, showing me their shirts, lunch boxes, backpacks, necklaces, whatever.  And to see her doing something so typical, well, that's pretty cool.

In the mornings the kids have to write a word and draw a picture in their "doodle diaries."  I sat here and watched several of the kids take their notebooks to the teacher to show her.  I don't know if that's something that she asks them to do or if they just show her when they are particularly proud of that day's work.  Either way, after a few kids did it, I saw Harlie carry over her book and show her teacher.  Then she returned to her desk.  I was wondering if she would come show me, since I'm here.  But, no.  Which is actually a good thing.  She should be showing her teacher and not worrying about whoever is sitting at this desk.

Plus, I get to see how good the kids are with her.  I know that won't last forever.  So I'm going to enjoy it while it lasts.

Yesterday, during recess, she was on the swing and I was pushing her.  A bunch of the girls wanted to push her, too.  Harlie was laughing/humming while swinging.  A little girl heard her and asked what she was doing.  I told her she was happy and she was singing and laughing.  Then Harlie laughed (she does have a funny little laugh, that makes other people laugh, too).  And the little girl looked at me, all surprised and then laughed, too.  Then she told another little girl, "Harlie just laughed!" And then they all started laughing.  It was really, really cute.

So, for those moments, I'm glad to be here.

Anyway, on Friday Harlie had an appointment with the Feeding Clinic.  Even though she is not currently receiving feeding therapy, she still has to check in every six months with the team and nutritionist to be weighed in and make sure she's getting enough calories.

At five years old, she weighs 35 pounds.  That puts her in the 10th to 20th percentile.  Not bad.  But, her height is only 39.5 inches.  That puts her in the less than 3rd percentile.  Cooper, at three, is only an inch or so shorter than her!  It's really quite crazy how tiny she is compared to her classmates.

The doc also put her back on the waiting list to receive feeding therapy.  The waiting list is NINE months long!!!  So, by the time she gets back, she would have taken a whole year off from feeding therapy.  And that's if she is able to go into feeding therapy when her name comes up (depending on jaw surgery and recovery).  At this point, I don't know how I'm going to fit it in her schedule anyway.

Sometimes I think I'm a glutton for punishment.

I found - and added - another speech therapist to work with Harlie once a week.  So, she will now see her school ST (twice per week), Amy (once per week), Becca (once per week) and Delisa (once per week).  But, Delisa will work on her communication device, which no one else is doing.

I'm torn because all of this therapy means time out of school.  And all of it is important.  But, I can't always get therapy out of school hours.  I guess I will do this for this year (since she's repeating kindergarten, anyway).  And next year, we'll just see where we are.

So, now Thursday will really be Therapy Thursday.  She'll see Delisa at 1pm, then we'll rush over to the southside to see Traci (her PT) and then immediately after that, we'll see Becca.  What a long, hard day!

Since she's been sick, she's missed all this therapy for the last three weeks in a row.  And for the past few months, I've been meaning to schedule an appointment for her to see her cardiologist.  It's time for her yearly check-up, and I have a few questions.  Her heart rate has been dipping really low during the night while she's sleeping.  I now have to set her monitor to alarm if it dips to 35 bpm.  If the alarm is set to 40, it will alarm every night.  This alarm setting has slowly gotten lower and lower over time.  Not sure what's up with that.  I'm not too worried since I know that it's because of her heart block (which means sometimes there is a longer pause between beats and the pauses aren't even or consistent).  So, she recovers, and it doesn't stay that low for that long.  At least I don't think it does.

Anyway, I finally called the other day and he only sees patients on Thursday afternoons.  Of course.  So, she'll have to miss another whole day of therapies to see him.  I didn't make the appointment because I wanted to think about how long I'm willing to wait to see him so she can get some therapy in.  That kind of stuff just bugs me.

Well, we are off to the cafeteria for lunch (yes, at 10:30 AM).  So, I must wrap this up.

More later!
~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

Feeding Clinic Appointment

This morning we had our big nutrition appointment with the Feeding Clinic team at the Children's Hospital here in Richmond. Harlie's feeding therapist, Allison, had already given them a report on how Harlie is doing eating by mouth. She is really doing great! And I can see that she is SO ready for the intensive feeding program! WooHoo!!!! Talking about it in the room with the team was amazing. I just can't believe we are here! I am so proud of her!

The scoop on the intensive feeding program is that there is a waiting list - about 20 kids long. And Harlie's name is officially ON THE LIST!!!

As of right now, it looks like the soonest she would start would be sometime in August. And, when the time comes, they will give me a three weeks notice.

This summer is going to be tricky. I can feel it.

As far as how the nutrition appointment went - Harlie is doing great. She weighs 29 pounds, 7 ounces and is 35.5 inches tall. She is in the 10-25th percentile for weight and 3rd percentile for height. She is the size of an average two and a half year old (she is three and a half).

She was expected to gain 1.2 ounces per week (since our September 2009 appointment), but instead gained 1.35 ounces per week. That is 107% of expected weight gain - which is totally fabulous - especially considering all that she's been through since September.

As far as growing in height - they expected her to grow 0.58 cm per month, but instead she grew 0.45 cm per month (78% of expected growth).

It is weird to hear some of these numbers (like 10-25th percentile) and that she gained MORE weight than expected. She is SO tiny! She appears to be skin and bones! And I had to tell them that she is still wearing size 18-24 months shorts! But, they say she is doing great, so I suppose it doesn't really matter.

On average, she's been eating about 10 ounces (of pureed food and Pediasure) by mouth per day. So the nutritionist recommended a different feeding schedule. One that gets her off her continuous night feeds again (which would be great). So, we'll start working on that tomorrow.

Exciting stuff, huh?
~Christy

Quick Updates

Well, I kept on thinking I would manufacture some extra time. HAH! So, I will have to give you a quick update instead of making my entry be long and drawn out and full of fun!

Back to last week (the really busy one)...

Murphy turned (gulp) 5 years old on Monday, May 11th. I wanted to dedicate a whole entry to this occasion (which I will, soon, I hope). His teacher at school asked me to make a poster board with some photos of him from birth to now and provide some basic info on how Tom and I met, how much Murphy weighed, etc. Of course, I waited till the last minute and was up way too late working on it. But, it turned out pretty good.

Then at school they had a "Birthday Walk" where they sit in a circle and talk about Murphy and what he was like and what he could do in each picture, etc. It was darn cute. Murphy made his own "birthday crown" and they took 5 walks around the earth (a globe) to show how old he is. I'm not doing a very good job explaining it, but it was very cute.

Harlie had a Feeding Clinic appointment on Thursday, May 14. She FINALLY gained some weight! She has weighed 24 pounds since September. Since the blenderized diet didn't work, I upped her volume hoping to at least stretch her stomach to help with the volume issue. Well, it certainly helped with the weight gain! She gained 1 pound, 12 ounces and now weighs 26 pounds! WooHoo!

After talking with the nutritionist, we decided to try to wean her from her specialty formula (Peptamen, Jr., which is already broken down so much to make digestion easier) to a more "normal" formula called Pediatric Compleat (something closer to a blenderized diet). We're in the process now and it is going okay, I think. I've come to the conclusion that she's going to vomit, regardless. Which is a bummer and another hurdle for us to cross later...

On Tuesday of this week, Harlie had speech therapy and wore her speaking valve for over 30 minutes total. I was so happy. But, she hasn't let me put it on her since. Ugh. That girl...

And her feeding therapy has been going well, I think. The most she's eaten in a single session is a total of one ounce (30 grams). Which is great! But, today she did terrible and only ate 8 grams during each session. Ugh. Again - that girl...

Cooper is now pulling up to a stand all by himself. Tom walked in his room yesterday morning and there he was standing in his crib like a big boy.

I have much more to write about, but instead I will just leave you with some quick photos I took this morning.

Weight Gain!

So, today we took the kids to get their flu shots. Murphy got his first "big boy" shot - in the arm! He did great. Harlie got hers and she has to get another one in one month. 

While there we went on ahead and weighed her. Drum roll please.... 17.8 pounds!!!!! I am so excited! And you can really tell, too. You can see it all over her body now. And I just can't tell you how good it feels to see some real fat on her bones!! So, it looks like the new feeding pump is doing the trick. I think I might start the transition to bolus feeding again this weekend. 2nd attempt. Hopefully it will go better than the first. 

So, after the appointment, I took Murphy to school. Then Brandy, me and Harlie went out for lunch. The waitress asked, "what's that thing on her neck?" I explained in the most brief form possible. Then she said, "well, when I had my daughter, they told me she was perfect. But I noticed she had a little spot around her eye. It was like a broken blood vessel. Now she has to wear glasses." 

Nice. Aren't people funny? 

Well, that's it. Just wanted to share the good news on her best weight gain EVER! 

Take care,
Christy