Some new skills!

I've been wanting to show you this video for a few weeks.  It was taken on October 28th.  Harlie can sign her ABC's with no help!  And she tries to verbalize a lot of them, too!

She practices a lot.  The other day, she did them with both hands at the same time!  I love that she finds it fun to sign.

And she can write her name!

I have a video of her doing that, too, but for some reason it won't upload.  I'll try it in another post and see if it works.  Those are window crayons (thanks, Grandma - they love them!).  Last week at school her teacher asked her to write her name on the back of her art project - and she did!  It wasn't very long ago (like two weeks, maybe) she could only write the H and the A.  And we don't need to spell it for her - she knows exactly what letters to write!  That girl amazes me every day.

There's a new post below this one (from last night) and hopefully I'll have another one today.  I have a lot to tell you to bring you up to speed!

Thanks!
~Christy

Speech Therapy

So, we had speech therapy today. She gets a one hour session, once a week. Today I decided to take Murphy with us. Teaching him to sign with her, and to "listen" to her sign, is quite challenging (like when she wants him to move or stop, for example). She is pretty easy to ignore - especially for a 5-year old boy. So, I thought a little instruction by our therapist would help.

To give a little background - these sessions are exhausting for me. I sit there and let the therapist be in charge. Sounds almost relaxing, right? WRONG! To see her try and get Harlie's attention - and then keep it, is frustrating. Harlie's just like any other kid, if she doesn't want to acknowledge what you're saying, she averts her eyes. Kind of hard to show her a new sign if she won't look at you. And then Michelle tries to get Harlie to finish her sentences by anticipating what comes next (like in sequencing an event like taking a bath - first you pour the water in, next you put the baby in, etc.). The whole time I am willing Harlie to cooperate. I sit there and think, "c'mon Harlie, you know that sign. You can do it! SAY IT FOR CRYING OUT LOUD"!

It's the willing her to do what she's supposed to do that sucks the energy right out of me. Today, Michelle tried to get Harlie to tell her who Murphy was. She asked her "Who's this"? Harlie didn't really care to introduce Michelle to her big brother. And that whole little lesson made me start the session in the hole - energy wise. Honestly, I don't know how these therapists have the energy to get through the day, seeing patient after patient.

The rest of the session was more of the same. Murphy's attention span is short, and Harlie's is even shorter. Michelle played a game of bingo with them. That was good, because they had to take turns and it's more structured. And you'd be surprised how many signs you can use playing a game.

But, I gotta tell ya - the thought of teaching all my kids and my family sign language is absolutely overwhelming. And really, I think the word overwhelming is an understatement. It's all fine and good teaching her (tiring, but good). But that's because she knows she needs to learn to tell us what she wants. Murphy? HA! He can talk. Why should he learn? And Cooper? We have to start all over with him. ugh. A simple thing such as saying goodnight. "Murphy, tell Harlie night-night". Murphy says "night-night Harlie" (without signing at the same time) and then I have to say, "Murphy, use your signs while speaking to her". To which he either does, or doesn't. And when he doesn't I have to tell him again to sign while saying night-night to her. And make them go through the whole process again. Oh my goodness. All those words and energy for two lousy stinking words - night night! WHICH WE'VE BEEN SAYING EVERY NIGHT FOR I DON'T KNOW HOW LONG! Holy cow!

Has the energy been sucked out of you yet? Because I would totally understand.

But Michelle said that Harlie is getting more aware of who understands her and who doesn't. So I'm sure she's thinking "what's the point"? So, instead of signing to Murphy to stop or move or whatever she wants to say, she grunts (very loudly I might add) and pushes to get your attention. Although I will say that Harlie will sign "share" - that's one that they certainly use with each other. Not that either of them (or any child under the age of seven) actually understand and practice it. They only know share when the other one's got what they want. But I digress...

While, for the most part, I have found signing "fun" (but really only because it allows me to communicate with my daughter), I can't help but wonder when she'll be able to talk. And I think life will be so much easier... one day.

Changing the subject, I took Cooper to an appointment today. He weighs 22 pounds (Harlie weighs 25). He measured in the 10th percentile for height (meaning that 90% are taller than him) and the 95th percentile for weight (meaning that 5% are fatter than him). So, by my measurements, he's ROUND. Nice.

Goodnight!
~Christy

She's Complicated

to say the least.

Dr. Jonas said that his decision to NOT do the Fontan was an easy one. She has the "world's worst scarring adhesions" were his exact words. Not comforting. He also said that it took two hours for anesthesia to get her ready for surgery. He said "two hours is almost unheard of." And the good news? It only gets harder. Gaining access is becoming more and more of a problem. What does this mean to her future!? That's a rhetorical question as no one really knows the answer.

He said that she needs to be monitored very closely over the next year OR TWO, to figure out when she's ready for the Fontan. For years we've heard that they like to do the Fontan about a year after the Glenn (she was six months old when she had the Glenn, and that's pretty standard timing for that procedure) but it can be done as late as age three or four. So, I had to ask what waiting to do the Fontan - a year OR TWO - means for that standard of thinking. His opinion is that there is no magic age. He said that Harlie is very complicated and we can't use the textbook for her. We have to let her tell us when it is the right time. I had to tell him that is the case with every single issue/challenge she has in EVERY specialty. It's growing tiresome. I didn't tell him that, though.

He said that when she's ready for the Fontan, it will be a risky one. The scarring raises the risk of bleeding substantially. The average risk of death or brain damage for a normal Fontan is about 3%. In her case it could be double that. I was thinking that 6% didn't sound that bad. After all, she had a 95% chance of death before she was even born. But he said that 6% in this case is high. But, I'm getting ahead of myself. Those are numbers that I can't worry about right now.

It feels very weird to think of her getting the Fontan in a year or two. Just Thursday night we were slated to have it all done and behind us. And now, on Monday, we are back to waiting. And not for a short time.

Anyway, her recovery time should be about a week or two. She's in the Cardiac Intensive Care Unit (CICU) now and if everything goes well, she'll spend the next five days or so here. That's good for us in that I know her care is topnotch and we can go back to the Ronald McDonald House to try and get some decent rest.

How she's doing now...

We didn't get to see her until later than expected. We came up to the CICU, but they said that her heart rate kept on dropping and her room was full of doctors, so they didn't want us in her room yet. They ended up having to put her on a pacemaker for now. They will take her off the pacemaker tomorrow to test her heart to see what it does without help. I'm keeping my fingers crossed that she will be fine and that it was just the stress and trauma of the surgery that was the cause. They've talked about hooking up her pacemaker for good (she has the leads in her heart, placed at 4 days old, but they are not hooked up to the device yet). I know in the grand scheme of things, a pacemaker is nothing, but it would be nice for her not to need it.

She is being kept sedated for tonight (which is a good thing). The problem is that she has built up a HUGE tolerance for pain medication and they have to push the envelope as far as that goes. There is a delicate balance between keeping her comfortable and suppressing her cardiac rhythm, of course. She's currently on Fentanyl and Versed (among other drugs) and still waking up. So they upped her Fentanyl and put her on a drip. She's still trying to wake up (even tried to sit up, which was not fun to see) and get this - she started signing!!!

She signed "mommy" and "daddy" and when Tom came to her bedside, she waved "hi" with her other hand. Is she something or what?!?! Waved hi, like no big deal. She really amazes me. Then she signed "hurt" and when I asked her if she was saying "hurt" she signed "yes". Then she signed either "mouse" or "doll" (those signs are very similar and her movement was a little sloppy, so I couldn't tell which). I was thinking she was asking to watch Mickey Mouse. But then she signed "monkey", which is what she signs when she wants to watch Curious George (her absolute favorite). And about that time she went back to sleep. Thankfully. Because her "awake" time wasn't all fun and games. She looks just miserable and very irritated. And itchy. I'm sure that's the Morphine. But it was making her scratch and tug and if she grabs a hold of one of those chest tubes I might just pass out myself.

Well, it has taken me forever to write this (over three hours to be exact), as I've had to get up and down a million times and answer a bunch of questions. Oh, another plus, we know the nurse from before and she remembered Harlie. Anyway, I better take this chance to wrap it up for now. I'll certainly have more tomorrow (surprise, surprise) so check back then. In the mean time, please continue to think good thoughts for Harlie's recovery.

Thank you so much for all your comments, e-mails and phone messages. We appreciate every single one of them.

Much love,
Christy

Memorial Day

During Memorial Day weekend, Tom got out the blow up pool for the kids. Harlie just LOVED it! She couldn't get in fast enough. And even though her body temp was probably 90 degrees, she didn't care. I was a bit nervous at first. Um, water and a trach don't exactly go together. And the last thing she needs right now is water down her lungs. BUT, the girl needs to have some fun, too! So I let her. I think she knows that she shouldn't go in. I mean, fully in the water. On purpose. However, she did slip and fall in. Twice. She popped back up so fast that we didn't have time to react. And she coughed, and went on with her playing like nothing happened. Amazing.

Anyway, so she's playing and having a grand time. I'm sitting in a chair behind her just watching. She looks at me over her shoulder. Then goes to stand up, gets her balance, then drops the toys she was holding and then signs "fun" to me. I was so surprised! She's pointed at objects and identified them, asked for the tv, and asked for a diaper change, but her telling me that she was having fun, well, that was something! A spontaneous sign from her telling me how she was feeling. WOW! I loved it! And you really should have seen how much work she had to go through to be able to sign. It was a wonderful moment!!!

Then later during the weekend, we went to a friend's house for her birthday (I won't mention names, Donna). They filled up the pool there, too. And Harlie had a great time helping. At the end of the video, she signs "silly" - again all on her own, with no prompting! WooHoo!

Here are just a few other photos from the day:

Harlie spraying Zach and Murphy.

Me and Donna

Me, Donna and Dara