Several updates.

Dental Surgery Update:

Can you believe that the very next day after our appointment with the VCU dental clinic, the scheduler called me to tell me that they moved Harlie's surgery date up to .... OCTOBER 23rd!  Isn't that fantastic?!  I am so relieved!  She will have a pre-anesthesia appointment a week prior and then a pre-op check from her pediatrician the day before.  I am so, so happy to know that she doesn't have to wait so long to get some relief.

And I just want to say thank you to everyone who cared so much about this on Facebook.  I was just venting and couldn't believe the response I received!  I can't tell you how grateful I am that Harlie is so well loved and supported!  So, thank you!!!

Nutrition:

Harlie had her annual well check with her pediatrician last week.  And she had an appointment with the feeding clinic, too.  Unfortunately, she's lost two to three pounds since April.  In April, we switched her diet from Pediasure 1.5 to Pediatric Compleat.  Both have the same volume per can, but Pediatric Compleat doesn't have as many calories (but it's a little easier to digest).  So, in order to give her the same amount of calories, we had to increase the number of feedings per day to five cans.
Well, her schedule was already a little nuts.  So, we tried to sneak the additional can into the middle of the day by breaking it up into two other feedings.  That just didn't work for her.  She would complain about her stomach hurting the whole day.

And when she covers her g-tube with her hand and says, "No! I'm not hungry." I just can't force any more into her.  I can be tough on her with a lot of things, but this is not one of them.  So, she suffered.  She lost weight, and as a result only grew one inch in a year.  You grow out before you grow up. (Although I cannot help but wonder how the heck Murphy is as tall as he is.  He is nothing but skin and bones!)

Now to catch up, she needs 5.6 cans a day.  Clearly, we have to make a change.  If I couldn't get five in, there's no way I can get 5.6 in!  After thinking long and hard, I made the decision to go back to continuous night feeds for a while.  I dusted off the ol' feeding pump and found a box of food bags in the attic.  I thought I wouldn't remember how to work the pump, but it all came back, no problem.

She now gets two cans during the night while she sleeps, and we bolus feed her the other 3.6 cans during the day.  It definitely feels like we are going backwards, but I don't see any other way.  I can't be accessing her g-tube every hour - that's just not sustainable for regular life.  And I don't want her to be uncomfortable during the day.  So, we'll see how it goes.  We have to go back for another weight check in two months.

Running:

I might have mentioned that I'm training for the Richmond Marathon in November.  As the miles are getting longer, working them into life is getting more difficult.  I have to document just how difficult it is so I don't forget it the next time I think about doing this again.  It's clear to me that our life isn't conducive to me running this many miles.

Last week, Harlie had three doctor's appointments.  At one time in her life, that would make for a slow week.  But, since we took some time off from all things medical, it was a shock to my system.  Throw in my part-time job (which is very part-time) and Murphy's after school sport (I might have forgotten to mention that we signed him up for year round swimming, more on that soon) and last week I was wiped.  Being at all those appointments messes up any kind of eating/drinking routine, too.  I had to skip a few meals, and glasses of water.

Normally, I run my long runs on Saturdays.  But, last weekend we went camping and we wanted to get on the road as soon as the kids got out of school on Friday.  So, I had to move my long run to Friday morning.  Luckily, it was a recovery week, so I only had to do 12 miles (I have to run 20 this Saturday).  Thursday night I told Tom that I didn't feel prepared for the run.  I had a really hard week, with not enough focus on eating and drinking.  But, it was too late to do anything about it.

Anyway, I had a hard time getting out of the house the next morning.  And after I finally did, all I could think about was all the stuff I had to do before the kids got home so we could be ready to go.  It's so much easier to set up camp in the daylight.

At about the five mile mark, I knew it was going to be a hard run.  I tried to talk myself up, but by seven miles, I reached for my phone and called Tom.  I asked him where he was (hoping he was out on a job close by) but he was in his office.  So, I said, "Okay, let me go.  I'm going to call my Mom and ask her to come and get me and drive me home."  I have never said that during a run before.  Never.  He encouraged me to continue and told me that we would still make it to the camp before dark - even if I walked home.  He said to run when I could, and walk when I had to.  I wanted to cry.  For real.

I forced myself to continue.  But I hated every minute of it.  As I ran/walked home, I kept on looking at every car that passed, hoping and praying that it would be someone I knew so I could ask them to drive me home.

Second. To. Worst. Run. Ever.  This was the worst.

After what felt like FOREVER, I finally arrived home.  And I have questioned my ability to run this marathon ever since.  One thing about running really sucks - all it takes is one bad run to completely destroy your confidence.

I ran ten miles on Wednesday and it went fine.  I need to put that lousy 12-miler behind me and move on.  And hope for MUCH better with the 20 on Saturday.  Ugh.  Why in the hell am I doing this?  Never again.  I will only do half marathons in the future.  I don't need this extra stress and anxiety.

Harlie's IEP (individualized educational plan):

I don't have enough energy to give this a proper update.  But, after a month of trying to get this IEP to happen, it is finally scheduled for Friday morning.  This is the first IEP I have ever dreaded.  I suppose that's not that bad, considering she's had more than I can count.  But, this is the first time I am asking for more than I think they want to give.  For home bound services, the minimum/standard is five hours per week.  But, that is for a typical kid, with no IEP, who can hear and talk and read and all that jazz.  Five hours per week is hardly appropriate for Harlie.  So, I want her to have more.  Since this is not something the school has ever really dealt with, there are a lot of questions for central office.  So, I asked the person with authority to make decisions on this to be in attendance.  I haven't met her.  So, I'm feeling a little nervous about having an "outsider" there, who has never met Harlie.  I'm hoping she's completely reasonable and excited about making a positive difference in Harlie's life.

No matter how many IEPs you have, it's never easy to sit around a table with a bunch of educators and talk about your kid and what needs to happen to help her learn.  I have a feeling that I'm really going to want a drink afterwards.  But, since I'm running those stupid 20 miles on Saturday, I can't have a drink.  Seriously, why am I doing this?!?!?!

I have to wrap this up now.  I have plenty more to tell you and I want to share some pictures from our camping trip.  But, I need to get to bed.  More soon!

Much love,
Christy xo

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

Fantastic Feeding Day!

Wow! Harlie had a GREAT day of eating!

Just a few weeks ago our goal was to get her to eat 3 to 3.5 ounces of food per day. Within days, she exceeded that goal. Then, on Tuesday at our feeding clinic appointment, I was able to report that she averages about 10 ounces per day.

Then today she ate/drank a total of 20.74 ounces of food/formula!!!!

All I can say is WOW! And WOO HOO!!!

I went to the grocery store today and bought a whole bunch of things for me to puree for her. I must admit that I'm not thrilled to have to learn so much about pureeing. Not the act of putting food in a blender and pushing a button (although surprisingly enough, its not that easy). I'm talking about how I pureed some mandarin oranges and it came out juice instead of a puree. So, I asked them at her feeding therapy appointment this morning and they told me to add mashed potato flakes. Another tip was to make cream of wheat and then mix it with a fruit.

I suppose each day I'll learn something new, and then each time will start to get easier and easier. Take today for example. I learned that a large can of yams requires a lot more water than you would think. And I also learned that the whole can of yams, plus all the water required, does NOT fit into my blender. Messy, messy, messy!

After I pureed the food I poured it into ice cube trays. Once frozen I transfer the cubes into bags labeled so I know what i'm giving her. So when it's feeding time, I can just grab a few cubes and defrost. Because there is NO way I can puree before each meal. It is WAY too time consuming. And WAY too, too, too messy!

I see a new heavy duty blender in my future.

Cheers!
~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

Feeding update

We had feeding therapy on Thursday. It went well, I think.

I can't believe how willing and accepting Harlie is to her feedings. Getting her to take a drink is rarely difficult. Our struggles are with her belly - and that it just can't handle the volume. Well, that's our guess, anyway. The GI area of the body is a complete mystery.

Yes, stuff goes in, stuff comes out and when it works that's great. But when it doesn't, well, good luck!

I still can't wrap my head around why we've always had such an issue with volume control. To watch Cooper down an eight ounce bottle in mere minutes proves my point. Harlie has NEVER been able to have an 8 ounce feeding. She's three and a half and is getting just five ounces. And still throwing up daily - after reflux meds and surgical intervention!

We've determined that she's more likely to keep more down if we give her half a feeding orally (over 30 minutes) and then finish the feeding through the tube and feeding pump over the next 30 minutes.

So, on Thursday, Allison (her therapist) fed her an ounce of pureed sweet potatoes and two ounces of Pediasure. She did beautifully. But then threw up with only 4 bites/sips left. Ugh. But at least she got to see what I was talking about. After she threw up a good amount, she went right back to feeding and finished it. With no complaint.

Seriously? Who throws up and then goes right back to eating/drinking what they just threw up with NO complaints??? She is really something.

Well, the big news is that Allison said that she is going to refer her to the inpatient feeding program.

This means that she will send Harlie's name to the team for consideration for admission to the intensive feeding program. We have our meeting with the whole team on May 11th. So, I'll learn more that day about what they think. In the meantime, I guess they will talk with Allison and review her file or something to see if they think she's ready, too.

Basically, the intensive feeding program lasts 6-8 weeks. It is an all day program (8am - 3pm) where the child stays there for all meals, Monday through Friday. Yeah, it's intense, alright!

Allison said that they will be able to try all different kinds of food/beverage combinations/frequencies to figure out what works best for her. With as willing and cooperative as she is, we just can't let this opportunity slip by.

I know there is a waiting list to get a spot. But I don't know how long it is. Allison said that summer is a busy time since parents don't want their school-aged children to miss school.

So, we'll see.

It is pretty weird to think how far we've come. Admission into this program has been like a pipe dream for us. I would have never guessed that we would be here now. I don't want to get ahead of myself. We aren't there yet. But, this is certainly the farthest we've ever come!

Even though I am not a planner - I am aching to know when things are going to happen.

I called to get her next heart catheterization scheduled. Hopefully I will hear back on Monday. Once she has her heart cath then they will tell me when her next heart surgery will be. I just hope we can pull all this off without the times conflicting. And I want to give her enough time to recover before throwing her into the next thing. Especially something as intensive as this feeding program.

I would have scheduled this heart cath a lot sooner if I could have. But, with her bone infection, we had to wait until she was at least half way through the antibiotic treatment. More on that later.

Having things this big hanging out there is very unsettling. I will feel so much better once we have them on the books so I can start to "prepare" myself. Thinking about heart surgery again - after what happened in February - makes me shudder. But, avoiding it would only make it worse.

That's it for now. Thanks for reading!
~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.