Harlie sneezed!

I know, you're thinking, "so what, everybody sneezes"? But, with this new PMV (the one with a little hole drilled in it) she can keep it on while she sneezes. Which makes a ...gulp... sound! And it is the cutest little sound I've ever heard! You can tell it is - in fact - a sneeze! When she sneezes without the PMV it doesn't sound like a sneeze. Well, I can tell it's a sneeze, but a stranger would hear her and have no idea that's what it was. But, with her PMV on - anyone could recognize that it's a sneeze! A real sneeze! And it sounds so darn cute!

Ahhh, it's the little things. Really.

~Christy

Funny Video and Therapy Change

So, I finally got the video problem figured out. It was operator error - but I'm learning. Harlie just loves her little brother. She's pretty much obsessed with him. When he cries, she drops (literally) whatever she's playing with and runs to his side. The other night I had Cooper on the floor doing tummy time while I filled his bath and of course, he was crying. Well she came running from Murphy's room, dropped to her knees and flopped on her belly on the floor so she ended up being face to face with him. Her movements were so fluid, like she's done it a hundred times before. It was hilarious. And, I'll give it to her, he stopped crying. Anyway, here are some videos of her playing with him.

And don't you just love the way she listens? Now I know she only has one ear and all, but geez! I just have a feeling she's ignoring me...

Anyway, I'm pretty bummed about a change that's coming. To bring you up to speed: the county we live in provides "early intervention" to kids with special needs to help them develop and get them the help they need. This service is provided until the child turns 3. The therapists come into the child's home, called "natural environment" to help the child feel comfortable so they can maximize the results from therapy. I also think it is to help the families because most of the kids have a lot of difficulties and it is really hard on the families with so many appointments and all. The county contracts with several different facilities to provide the services. It really is extremely confusing once you get into it.

Anyway, a few weeks ago Harlie's speech therapist (Beth) told me that the company her and our physical therapist (Tracy) work for is closing it's pediatric services. So, they are out of jobs, which means we can't keep them as her therapists anymore. She said that if they are to get a job with another company that the county has a contract with to provide early intervention services, then we can stay together. So, I was very hopeful that would happen. But, the county needs to find Harlie other therapists that are available - just in case Beth and/or Tracy get jobs elsewhere. Harlie NEEDS these services - period. And I got a phone call last week from my services coordinator telling me that they found Harlie 2, one hour slots with a speech therapist (one hour for feeding and one hour for communication per week) and a slot with a physical therapist. The only problem is that we have to go to their location for the services. They cannot come to our house. Budget cuts. Great. As if our schedule wasn't hectic enough as it was...

So, not only will this be way inconvenient, but we have to change therapists! Tracy has been with Harlie from the beginning! And Beth has been with Harlie for more than a year! That's a lot of bonding and trust developed - and that's essential to making good progress - especially when it comes feeding! And that bonding and trust is not just between Harlie and them - it's also between them and ME! So much of our therapy also centers around teaching me how to get the best out of her. It's really not as simple as regular parenting. The line between behavioral issues and true medical issues can be very blurry and me trusting them with their advice is absolutely essential to her progress! So, I'm just sad. Now we'll have to start all over.

Well, that's all we have time for today. Come back tomorrow and I'll have something else to talk about.

Take care,

Christy

Quick one

Just wanted to let you know that all is fine here. I worked this past weekend which was a nice break from the house. And tomorrow is my first day working during the week. I'm going to try it and hopefully I'll be able to juggle everything around to make it work so I can continue to work a couple of days per week. My mom is going to help me with Cooper, which I am very thankful for.

I ran 5 miles today in my training for the Ukrops 10k. WooHoo! I'm thinking that this whole working out thing is pretty essential to my mental health with a major bonus to my physical health. Sounds like a win-win situation to me. To be honest, my time at the gym is wonderful. It is nothing but "me" time with no one asking anything of me. No phone calls. No kids crying. No mess to clean up. If I ever think I'm just not up to going I remember what I would be doing if I DON'T go and that gets my butt in gear. Easy motivation there.

I have a video clip I have been trying to upload, but it keeps giving me an error code that I need to figure out. So, I'm going to work on that more tomorrow. And I have more I want to talk about, but it's too late now. So, I'll have more tomorrow afternoon.

Take care,
Christy

Feeling crappy

It's probably no secret that I'm down in the dumps. I can usually pull myself out pretty quickly. But I'm having a harder go of it this time. Sometimes I just wonder if I will have the energy that this coming year will most likely require. For the most part I only look so far ahead - looking too far makes everything too overwhelming. But, trying to figure out which surgery will happen first (when I thought her heart surgery would surely be) is getting me down. Now I have to meet with her plastic surgeon and a new ortho doc in DC to try to get a handle on what needs to happen and when. Then I'll report back to her cardiologist in DC to try and figure out how it's all going to play out. I am very surprised how unsettled I feel about it all. This is when I wish I had someone (like, say, a medical professional?) to help me coordinate and figure all this stuff out. But there isn't such a person. The reality is that there isn't ONE doctor that knows as much about all of her specialty issues as me. Great. More fun for me!

Anyway, Harlie had an upper GI last week to check on her nissen fundoplication. It was awful. Not that it was "painful" for Harlie, but we had to hold her down under the x-ray machine and she hated that. Especially considering she had just gotten her ear tube the day before! They put some barium in her g-tube and then took x-rays to see what happened once it went in. The reason she had it is because she was back to vomiting every day again. They just wanted to see if it was still intact and that it was where it was supposed to be. The radiologist said that all was fine. Didn't know how or why she would be vomiting every day again. Oh well.

HOWEVER, I don't know if you remember, but I've been working towards getting her on a blenderized diet. I've heard so many good things about it and I really wanted to get her on it before we did the nissen (as I've heard that vomiting commonly stops when the child is on it) but there just wasn't time. Anyway, Harlie is now up to getting 3 ounces of applesauce and 3 ounces of green beans, plus 4 cans of formula (which makes a day's supply). And she hasn't vomited in a week! Well, that's not completely true - she vomits if she gags during feeding therapy or if her trach really needs to be suctioned, but those times don't count, if you ask me. So, I'm hopeful that this blenderized diet has some great benefits.

PLUS, we stumbled along another great accomplishment this week... On Monday her feed pump broke. So, called the people about it and they said it would take a while to get someone out. Bummer because that meant we had to feed her manually. So, I broke down her rate into 3 "bolus" feeds over 30 minutes. Her feed rate was 200 mls at a rate of 400 mls per hour. So, it took 30 minutes for her to be fed. Well, the 3 bolus feeds went great. So, after a while, we tried to do it in 2 bolus feeds. That worked great, too! And she wasn't in the least bit bothered by the change. No vomiting, no uncomfortableness! Now, today -she was fed in 1 bolus feed for all her feeds - and she did GREAT! YAY! No more food pump! No more depending on a piece of machinery to feed my child. I just need the right tubing and a syringe and we're good to go! It feels like a little bit more freedom. So, that's all quite exciting.

Last Thursday Harlie got her monthly RSV shot. That's never fun. And while there, Cooper got his well check and some shots, too. At 3.5 months old he weighed 14 pounds, 12 ounces. That puts him in the 50-75th percentile. None of my kids have ever been that high on the chart. I can't help but go and look at how that compares to Harlie. She was 11 months old before she weighed that much. And at his age she weighed just 8 pounds, 1 ounce - not even his birth weight! Crazy.

Well, that's all I have time for tonight.

Take care,
Christy

Disappointing

On Tuesday we went to DC to get Harlie a new ear tube. I guess since she's getting older, she's getting put later on the OR schedule, so we didn't need to be there until 8am. So we left our house at 5:30 - not too bad.

As far as her ear goes, everything is fine - no big deal. Her ENT put a tube in and she's good to go.

BUT, during the waiting for them to take her back to the OR, I got some time with her ENT and gave him a brief summary of her upcoming heart surgery and went over what I would like to happen (heart surgery in the spring, decann sometime thereafter). He asked me a bunch of questions about her PMV (speaking valve) use and I told him what our struggles are. He watched her play a bit and then left. When he came back he told me he wanted to do another bronchoscopy, just in case a granuloma or something was blocking airflow causing our struggles with the PMV and so he would have up-to-date information so he could talk to Harlie's cardiologist about the timing of everything. So I said sure, go ahead.

Without going into a ton of detail, it appears that her bone graft jaw reconstruction was unsuccessful. While she looks better, the real goal of the surgery was to "fix" her upper airway obstruction (her tongue base) so she wouldn't need the trach to breathe or a tube to eat. We were told that her jaw could recede, but our last check up with the plastic surgeon went so great. And her surgeon had a 100% success rate (well, before Harlie, I mean). So I just really believed that it would be a success. To think otherwise was too painful and unnecessary!

So, to say that we're disappointed is an understatement. When her ENT showed me the pictures from the scope - there's no denying it. I was shocked. He said that she needs either time for her jaw to grow, or more surgical intervention. Both requiring more time than I really want to think about. At the rate she grows, who knows when it would grow out. And she had that surgery in JUNE, with possible decanning a year later! So, clearly she will have the trach for much longer than anticipated. Which really isn't shocking in the world of trachs. That's why us trach moms don't daydream too much about life without the trach. And even though I said I knew it was no guarantee - being honest, I didn't really think that applied to us. I guess I won't make that mistake again, huh?

This also explains why she didn't want to wear her PMV as much as we wanted her to. The problem is that she can inhale just fine, but she can't fully exhale. So her ENT drilled a small hole in a PMV and gave it to me to try. We've been trying the new one and while she still takes it off (and hides it) she definitely tolerates it better and has already worn it for a much longer period of time.

So the next day I called her plastic surgeon's office and made an appointment for February. Now we need to figure out what can be done, if anything, and if so, when we can do it. And now my happy little dream of what this new year was going to bring us is...well, not going to come true. To think just 11 days ago I thought she would only have 1 surgery this year. Now we're looking at heart, spine and possibly craniofacial (which there's NO way she can have all of them done in one year).

While this might seem like a depressing post - I want to end on a positive note (it's what gets me through this crazy journey). While I dreamt of a naked neck and a nose breather, she can communicate. And her trach care has gotten "easier" in the sense that I feel more seasoned and comfortable with all her care. And I have great nurses that I love and that love Harlie. And hopefully, with the use of the PMV and future communication devices, she won't be held back developmentally because of the trach. So, this isn't the end of the world. Instead of dreaming of a naked neck, I'll dream of a major growth spurt that kicks her tongue base out of her airway! Which, actually, now that I think about it, is kinda the same thing. Oh well. Whatever works.

Take care,
Christy

Harlie "said" her first word!

On Thursday Harlie's speech therapist (Beth) started working on getting her to verbalize some vowels. We are hoping that Harlie realizing she can make sounds/talk, that it will make her want to wear her PMV (speaking valve). Here are a couple of videos of Harlie "saying" her first words!!! I know we have a long way to go but it's so exciting!

I hope you enjoy them as much as I do! OH! And when Harlie said "eye" the first time, I said "I want to get this on video" so I jumped up and ran to get the camera. When I got back and sat down, Beth was already working on getting her to say "oh" for open (like in the second video). BUT, Harlie stopped and looked directly at me (without me saying a word) and said "eye" again. I swear she knew what I said and understood it! And Beth completely agreed. That girl is something!

Well we have to be on the road by 5:15am to go up to DC for her ear tube. Talk to you later!

Take care,

Christy

Orthopaedic Appointment

On Thursday we had Harlie's yearly checkup with her orthopaedic surgeon here in Richmond. I have to admit that I wasn't prepared for what he said. I told him that I thought Harlie's spinal problem has gotten worse. At least I can see it is more prominent than it was. Here's a couple of pics so you can see what I'm talking about.





Even though it is definitely more noticeable, since she appears to be walking "fine" I haven't really been that concerned. They took an x-ray and after he took a look at it and came in and examined her he asked me what was going on with her, how's her breathing, etc. I gave him a brief rundown of this year's coming attractions and he thought for a minute. Then he said that it isn't urgent, but it is no longer a question of IF she has to have spinal surgery, it is a question of WHEN. He wants her to have an MRI to gather some more information and make sure there are no surprises prior to surgery. He ordered the MRI and they called me the very next day to give me the date - April 2nd.

Unfortunately I made the bad decision to take all my kids to the appointment. I should have called my mom for help. And to be honest, that was my plan originally, but things have been so hectic around here that I never made time for the 2 minute phone call. Dumb, I know. So, when it came time to get ready to go, we just packed them all up and Brandy and I went with all 3. I packed Murphy a backpack with books, a marker, a Leapster, a snack, a drink and yet he STILL got bored!

Anyway, because it was a mad house and I was a little flustered over Murphy (he can be VERY distracting) and since I was so surprised at what he said, I didn't think to ask some pretty important questions. Like, if you want her to have an MRI soon, then when are you thinking you need to do the surgery? Certainly he wouldn't want the information to be that old when he actually does the surgery. So he must be thinking sometime after her heart surgery (at least sometime this year) and that's just plain disappointing. And, what will happen if he doesn't do the surgery? What are we trying to avoid from happening? I'll deal with the risks from the surgery later (I think a little common sense comes to play here). I know that he wants to completely remove the hemivertebra (congenital malformation of the spine in which only half of a vertebral body develops) that's causing the scoliosis (it is acting like a wedge between normal vertebrae) and then fuse the surrounding vertebrae together. I have no information other than that.

Another big issue we will have to deal with is if we want her to have surgery here (in Richmond) or not. I really like her doctor (a surgeon). However, he operates at St. Mary's and quite frankly, I just don't feel comfortable with her having surgery (especially one of this magnitude) there. How many Harlie's do you think they operate on? And I don't mean the surgeon necessarily, I'm talking about the anesthesiologists. And then what would her care be like afterwards? St. Mary's isn't exactly known for their PICU. Ugh. It's during times like these that I feel very overwhelmed with her medical issues.


So in a nutshell, I'm very disappointed. I thought that this surgery would happen YEARS from now. And I know that this surgery is a big one and on top of her heart surgery, I just wonder how she'll handle it all (or us, for that matter). In all likelihood she will be stronger than the rest of us.

Well tomorrow Murphy has his first day at a new school! A friend and fellow parent of a child with a CHD recently opened a Montessori school. After learning about the philosophy behind the name I am SO excited! I took him there to meet the teacher on Friday and get the full tour. He loved it and when it was time to go he did NOT want to leave. Although it was a pain in the butt at the time, I am very glad that he liked it that much.

Well, it is late and we have a VERY busy week. Tomorrow I have a doctor's appointment and Harlie has a pre-op appointment at the pediatrician's because on Tuesday she is finally getting another tube put in her ear in DC. Then on Wednesday Harlie has speech therapy and an upper GI at MCV to check on her Nissen. She is back to vomiting every day again (insert sad face here). It started out slow back in August and has progressed to sometimes several times a day. Bummer. Then on Thursday she has speech therapy and then gets her monthly RSV shot and Cooper has a well check. And on Friday Harlie has both speech and physical therapies. Whew!

Oh! But before I go... HERE WE GO STEELERS, HERE WE GO! Tom and I had a date night and we both went to the bar to watch the game with the club. If you're a Steeler fan, it was a great game!

Take care!
Christy

Stubborn Harlie

Here is a little video of us trying to get Harlie to put her "voice" on (her PMV, which is a speaking valve - it's that little purple thing hanging from her trach). I am very happy to say that things are getting much better. AND I have an exciting video to post! So, check back soon. I have a lot to write about so I will try to post a few things this weekend.

Happy Birthday to me...

Well, I am officially training for the Ukrops 10k on March 28th. I've been back at the gym with a very structured work out plan for the last month and I am liking the new routine that's developing. Murphy had his last day at his preschool on Friday, January 2nd. I was very sad. I really liked that school and I think he did, too. Luckily (at least so far) he doesn't seem to be bothered by not going. I tried to explain to him that he wouldn't be going back, but who knows how much of that he understands. Anyway, now that he's home I am taking the boys to the gym with me in the mornings and leaving Harlie here at home with Brandy or Jennifer depending on who's working, of course.

Since I am getting back into running, I had to get a new pair of running shoes. The ones I've been running in are at least 5 years old. Not a good choice to run in! So, for my birthday my Mom gave me some money and I promptly went and purchased a sparkling, brand new pair of running shoes!



Another birthday present I got was from my friends Heather and Marcy. For those of you that don't know, they both had baby boys in June. They got me a bracelet with my children's names and birthstones. The picture doesn't do it justice. It is very pretty and I just love it!!



Tom got me an mp3 player that is really small so I can wear it when I run. He also got me a CD by the Offspring. He heard a song on his way to Pittsburgh shortly before Christmas and it has my name in it. The funny thing is that Brandy and I were just talking about how there isn't a song that has "Christy" in it. Anyway, the song by the Offspring is called, "Kristy, are you doing okay"? It really isn't that romantic - nothing like "Brandy, you're a fine girl..." or "Sweet Melissa", etc. In fact, I think the gist of the song is that Kristy was abused in some way when she was a kid and he wants to know how she's faring. So, no, the song itself isn't romantic. But I do think the gesture of Tom hearing it and buying me the CD was. And it turns out to be a really good CD.

Well, it is getting late, so I must go. I'll leave you with a snapshot of Harlie from the other night. This picture was taken at 6:58pm!!! She was really wiped out that day! And no, she does NOT sleep with a pillow - especially a gargantuan one like that. We put it in there so she could sit up and look at her books while her feeding finished up. She didn't last 5 minutes. We removed the pillow and she slept soundly all night.



Take care,
Christy

Happy New Year!

So, wow! It's 2009! For the last week I've had lots of things going through my mind. Looking back, 2008 was a pretty big year. And looking ahead, 2009 will be a big year, too. Here's a quick peek at what lies ahead for us this year:

1. Harlie's third heart surgery called the Fontan. This will be her biggest and most involved heart surgery so far. I'm mentally preparing for a lengthy recovery in DC.
2. Harlie might be decannulated (removal of the trach). What a HUGH LIFE CHANGING EVENT THIS WILL BE!!!!!! But this is not something we can count on - so I try to keep my dreams in check - just in case.
3. Murphy turns 5 in May and then will start Kindergarten in the fall. WOW!
4. Hopefully, Harlie will start some sort of preschool later on this year. Um, can we say SCARY! I might have a nervous breakdown. But, it will be good for her and I will have to be strong and let her go.

With any luck, Harlie's only surgery this year will be the Fontan. As of right now, no more are planned. I think after the Fontan, the next items on her agenda will be getting her a prosthetic ear, and eye surgery to repair her left eye issues - both will be done when she's 5.

So, hopefully things will calm down a bit towards the end of the year - medically speaking, I mean. Perhaps we can become more like a typical family.

As far as when her heart surgery will be, I'm not sure right now. Tom and I have done a lot of brainstorming the last few days and we've come to the decision that it would be best for our family if she had it in the spring vs. the summer like we've talked about in the past. I don't think it will matter that much to her docs considering most Fontans are done when the child is around 18 months old. They wanted to wait longer in Harlie's case to give her lungs as much time as possible to grow as big as they can. She only has 3 lobes instead of the normal 5. The condition of her lungs are vital to the new circulation the Fontan brings to her body. Her heart is being re-plumbed if you will, and so it will function differently than "normal".

But I'm thinking that moving it ahead a few months won't make that big of a difference. And I really don't want to spend our summer in the hospital, especially while we're getting Murphy ready for Kindergarten. Plus, emotionally, we just want this behind us. I don't want to go through the next 6 months with it looming over our heads. And since we were looking at spring for possible decanning, ideally, we could work on the things needed (sleep study, capping trial, etc.) while Harlie is recovering from her heart surgery. But we'll just have to see how things go.

Well, I have more to write about but I only get limited amounts of time in front of the computer at once, so I'll have to work on that later.

I hope you all had a nice New Year celebration. I am hoping that 2009 will be a great year for us all.

Take care,
Christy