More Vacation Pics

So, I still have some vacation pics I haven't shared yet. When we go on vacation (there are 5 families) we divide up the dinners and each family gets a dinner that we're in charge of. Well, my younger brother, Cabell and his girlfriend, Liz, did Mexican night for their dinner. Yum. They provided all the necessary attire and music to get us all in the mood. It was a lot of fun. Here are some pics:

Cabell, my younger brother

My Mom and Dad

Tom, being goofy, of course

My older brother, Bruce and his wife, Nancy

Murphy

My niece, Kelly

My niece, Maggie

My nephew, Charlie

My niece, Jordan

And us.

I wish I had thought at the time to get a picture of everyone. But, it was kind of crazy, so that didn't happen. Kelly had blender duty and made frozen, non-alcoholic drinks for the kids - and me. They were really good, too.

That's it for now.

Pulmonary and Nutrition

Today we had a marathon appointment with Pulmonary and Nutrition. It was over 3 hours. And one hour of that was torture for me. I only kept my patience because I love Molly (Pulmonary) and Anne (Nutrition), so for them, I stuck it out.

After we got settled into a room and they took all the vitals and measurements for Harlie, I guess an intern or resident or some type of medical student came in and introduced himself. Obviously, I wasn't listening as I do not know what his "title" was. All I knew was that he was going to ask me a gazillion questions and it would take forever.

This has happened before at some other specialty appointments. One time, when we went to see her GI doc an intern (or whatever) came in and introduced himself and said, "Hi, do you mind if I ask you some questions?" Certainly he wasn't really asking, he just had not learned how to phrase it yet. But, I jumped on the opportunity and said, "Yes, I do mind. I would just prefer to wait for the doctor, thank you very much." Well, to be honest, I don't remember exactly what I said, just that it was no, he couldn't ask me and he quickly left the room. The doc then came in and we went on as if nothing ever happened. I probably saved us an hour at least!

I really don't like being so rude, but I just couldn't help it. And I know that they have to learn and that MCV is a teaching facility, but geez. I can't always be the case study of the day. There is WAY too much history for me to go over - especially at a place that knows us. I would completely understand if it was a first visit, but the 10th?

But, as I said, I stuck it out and answered this guy's questions because I love Molly and Anne so much. I really didn't want to be rude in their clinic. But, let me tell you - I should get some kind of award for not losing my patience with this guy. I about lost it when he asked if she's on oxygen. I said as needed. He asked, "through a nasal cannula?" Um, HELLO! She's trached knucklehead. Now, I wouldn't expect anyone (like my loyal Harlie fans) to understand - but a med student?! Now c'mon!!! A med student should know that if a person is trached, that's how they breathe - thus - air goes in and out through the trach - not the nose. Duh. I do have to say that I must have sounded somewhat annoyed (hey, who wouldn't?) when I said, no, through her trach. Because he seemed to be kicking himself for asking that one aloud.

I guess I should give him a break. He's learning. I mean, who hasn't been there, right? But I get nothing out of him learning. I mean, he gets school credit, hours, pay or something for him putting on his coat and coming in the room asking me a bazillion questions (all of which are answered in her chart of course - achieved through many hours of my personal dedication and time spent in their clinic). But what do I get? Time wasted. That's what. And perhaps some blog material. But still...

After he FINALLY left, Anne came in and asked me what I did to the poor guy. She said he came out looking dazed and completely overwhelmed. Ahhhh, I couldn't help but laugh. Hey, he's the one who asked the questions - I just did my good duty of the YEAR and answered them. I should get some sort of teaching credit. A Patience Award at least. She did say that was the longest history exam she's seen. And I believe it.

Anyway, I was really hoping for Harlie's weight to be 23 pounds. But, that was just not to be. She weighed in at 22 pounds even. She weighed 20.8 pounds in early April. That's not even 2 pounds in more than 4 months! But, she grew over 2 inches, so that's great. Basically, she's the weight of an average 14-month old, and the height of an average 18-month old (and she is 23 months now). Which really isn't that bad considering her history. She's on the growth chart for BOTH height and weight at least, and that's something.

After Anne did her number crunching, it seems that we are not feeding her enough. So, we are upping her intake by a lot. 200 mls to be exact. Which is about 6 ounces over 24 hours. That's a lot for her little belly. So, it will take us a while to up her volume at each feeding. And we are going to start giving her 3 "meals" and 2 "snacks", and then try to increase those feedings, while decreasing her night feeding. I would LOVE to get her off her night feed - or at least greatly reduce it. Our goal is to try to get her schedule to be more like that of a typical toddler. Once we've got her schedule adjusted, then we will start to go to a blenderized diet. Something I've been wanting to do for a while. But, we just couldn't make these changes while her jaw was wired shut.

As far as her pulmonary status, she's good. Except for this cold. Molly increased her breathing treatments to every 4 hours during the day (she gave me a break at night) and told me to give her 48 hours. If no improvement, then I need to fill a prescription for Prednisone. So, we'll see how she does. Of course, the second our feet left the building (literally) Harlie started coughing up a little blood. Which can be typical for a trached child. Although it is a little weird in that she had not been coughing at all. So, I called later just to make sure it didn't make a difference to our current course of action, and Molly said it's probably just irritation and to not worry about it unless it gets worse. Which it hasn't so far.

Murphy went with us to the appointment and for being in a small room for 3 hours, I think he did pretty well, all things considered. When we got in the car to go home he said, "Mommy I had a great time at Harlie's doctor's." I'm glad he was entertained.

Take care,
Christy

She can stand!

Okay, first of all - just in case you are curious. The Sharpie "drawings" on their legs came off. We looked it up on the internet and found that baby oil was recommended for removing the ink from the skin. And what do you know - it worked. So, for all of you with young children - you might want to store that hot little tip in your memory bank. Or you could just better supervise your kids. Whatever works for you.

So, we had physical therapy today. It went really well. Traci got her to walk a lot. She definitely CAN do it, she just hasn't realized it yet. She's taken at least 10 steps on her own. She is still very scared and does not like to be unstable. One thing we've been working on for a while is teaching her to stand up without holding on to anything. Traci thinks that once she gets that, it will help her realize that if she falls, she can just get back up. So, as time has gone by, she has seemed a little more cooperative with it. And today she did just great.

So, I'm getting the kids ready for bed and Harlie starts goofing around on the floor. Laying on her back and just doing silly things with her legs. It is SO nice to see her do some normal toddler things. I can really tell that she is getting stronger and stronger. Anyway, Murphy comes in and they're playing and I'm measuring out Harlie's meds and all of a sudden Murphy says, "Look Mommy, Harlie's standing!" And sure enough - she was standing all by herself, clapping and smiling. I couldn't believe it!!! That is the first time she's ever done that completely on her own!!! I am so excited!!

Of course, she sat right back down. But, Murphy asked her to stand again, and she did! So, that time I got to watch her. Then once she was up I told her to walk and give me a big hug - and she did!!! I really hope she'll do it again tomorrow so I can get it on video.

We also started our new schedule with our speech therapist, Beth. She has taken over Harlie's feeding trials and will continue to do her speech therapy as well. So, she'll be coming twice a week (an hour each) from now on. Harlie is doing well with the oral trials - it just takes more patience on my part than I could possibly put into words.

I've known for some time that it will take years for her to be able to eat by mouth - especially enough to lose her g-tube. And I'm fine with that for the most part. I've accepted it. But the trials are SO frustrating. And I mean, frustrating that I can't get her to swallow. It's not something we can just make her do. I can keep up with all of her doctor's appointments, order her supplies, give meds on schedule, make her walk, clean her wounds, follow doctor's orders, etc. But I cannot make her swallow. I put baby food in, it comes out. I squirt thickened water in and it comes out. And that's what we need to do to get her where she needs to be. Each day with the stretches, and food presentations her tongue is getting stronger and stronger, but, it is a slow process. One that you can't see.

So, three times a day, I have to make myself sit down and do what I'm supposed to do. Even though I hate it. There. I said it. I hate it. I hate that she can't eat by mouth. I've hated it from day one. I hate little shirts that have cute little cupcakes or ice cream cones on the front of them. I hate that she doesn't know what a cookie tastes like. Or how to lick a lollipop. Or how to lick her lips for crying out loud! And next month she'll have another birthday and the cake will mean nothing to her. This is when I need patience. This will all happen for her - one day. Just not anytime soon. And if I don't sit down with her and do what I'm supposed to do each day, it will take even longer.

Don't get me wrong - it's not all bad. I'm not all gloom and doom about her feeding trials. Granted, I hate that I'm dependant on medical equipment to get food into her belly and that she is missing out on so many good things that food has to offer. BUT - there are many things that are really good for her.

1. She is not orally aversive. This is huge. And it is because we have worked so hard from day one to make sure that she puts things in her mouth. And we've done mouth exercises. And we've put food in her mouth - so she's used to that, even though she doesn't know what to do with it once it's in there. So, all the oral trials we've done so far (for the past 18 months) - even though we couldn't see "progress", we are now reaping the benefits.
2. She is a willing participant. Really. She is. She wants a spoon and she wants to feed herself. She doesn't seem to mind what the food is, either (green beans or bananas). Does she taste? I have no idea. She wants to "drink" the thickened water - even though that has no flavor at all. Maybe she just likes the way it feels. Maybe she just wants to be like everyone else. I don't know. But, she wants to help and that is huge.
3. She chews. I know, that sounds strange. But, when she puts a rubber toy in her mouth, she chews on it - just like she should. And chewing could have been like the swallowing. Meaning that we could have been in the situation where she didn't know how to chew. But, luckily, she chews (or bites down I should say) and likes to.

So, I just need to concentrate on all the good things we have going for us and be patient. And diligent. And energetic. Okay, maybe that's going too far. At least for the next few months. Let's just stick with patient and diligent, okay?

Take care,

Christy

Daddy was in charge...

So, Harlie and I have come down with terrible colds. She's handling it a lot better than I am. She still wants to play. I just want to sit and do nothing. She coughed constantly during her nap and finally she gave up on sleeping and I got her up and brought her downstairs.

Tom came in from the garage (where he has already started the dresser/changing table - YAY!) and "took over" so I could get some much needed rest. It's a good thing Daddy was in charge. I know that they are being closely watched so they can't get into anything they aren't supposed to. You know, like GIANT Sharpies????

I suppose this is a rite of passage for all kids. Markers and cutting their own hair. Well, one down...

I guess I should be happy they kept it off their faces, the carpet and the walls. Oh - and another way you can tell Daddy was in charge is that Harlie's not wearing any clothes. Nice. His response? "She's got a bib on." Silly mothers, dressing their children.

Take care,

Christy

Baby Furniture

So, in an earlier post I mentioned that we aren't "ready" for this new baby - as far as a room, I mean. We can't reuse Harlie's furniture because she is no where near ready for a big girl bed. She is still connected all night long to her feeding tube (for 10 hours she gets fed while she sleeps - bring on the calories!) and she is connected to the trach collar which supplies her humidified air (and oxygen when necessary). Oh, and her pulse ox probe which is wrapped around her toe. Plus, she can't walk yet, so there's no way she's ready to give up her crib.


So, months ago I saw the furniture I wanted - in the Pottery Barn catalog. Well, we're certainly in no position to go buying it there, of course. So, my dear, sweet, handy husband said he could make it. Yes, build it himself. Which is great. Except that time is not something we have a lot of and so we're slightly behind schedule. Oops. Here are some photos:







The good news is that he's finished building the crib. The bad news is that he still has to start the dresser/changing table, and then a night stand. And then, of course, I have a list I've started, you know, toy boxes, toy shelves, etc. Poor guy. Oh, and we're painting the furniture navy blue. I thought it would be really cute to accent it with pinks and lavenders if it's a girl, and whatever other colors if it's a boy. So, that's the plan. Let's just hope this baby cooperates and gives us a few more weeks to finish. I'm 35 weeks along, which is when I delivered Murphy and went into my first labor with Harlie and started bed rest to buy two more weeks. So, hopefully this one will be completely different and I'll be 39 weeks DYING to deliver.

Take care,
Christy

Guessing Game

So my friends set up this game for people to guess the gender, weight, etc. of Baby #3. If you want to play along click here and enter your guess. The game name is ChristyH - you enter that in the upper left hand corner under Invited Guests. I'll see what I can do for the winner...

Thanks,
Christy

Feeling sad for a friend...

This morning, I got on my trach support board to see if anything was new with my trach friends. Although I don't have a lot of time to post messages, I always want to keep up with them and how things are going. It is amazing how well we have all gotten to know one another and our children without ever meeting in person.

Anyway, I was shocked and very saddened to read about one little boy, Tommy, who shared Harlie's birthdate. After battling heart and lung issues, he lost his fight and passed away last night. Over the past 2 years on the board, I've seen videos of his accomplishments, read of his ups and downs and I feel like I know him and his mom very well. He was in the process of transitioning to a single ventricle heart (like Harlie) and also had some lung issues to deal with as well (like Harlie). He was doing very well and I am just shocked that this happened so suddenly. And just a few days ago, another friend (not through my trach board) lost her daughter. Just heartbreaking.

I know that death is a part of life, but it seems as if I know it more than most for some reason. As I have said before, the possibility of losing Harlie is always in my mind - in the back on a good day, and in the front on a bad one. We have been so lucky so many times that things have gone her way when we needed it to. I honestly don't worry so much anymore. She's very stable and is progressing and getting better all the time. So, I have relaxed a lot and really don't think about it that much. I have good feelings about her future so I just don't see a reason to worry like I used to. And my energy needs to be spent in so many more productive ways than worrying. But, it's times like these that bring it all back home and slap me in the face. And the bottom line is that it will be this way always. That's just life - not just for me - but for anyone. Death is a part of life.

But I am so sad for my friends. Such incredible losses. Please send some positive thoughts to those moms and their families.

Thanks,
Christy

3rd Heart Cath Results

All went great! Just as I had expected, things have improved for Harlie since her last heart cath. All her pressures were good and Dr. Moskowitz said that he could see much more lung tissue than last year. So, clearly her remaining right lung lobe is growing. The subaortic stenosis (narrowing of the area below the aortic valve) has remained the same (hasn't gotten worse), which is great.

Dr. Moskowitz is going to send up all the information to her surgical team in DC to see what they want to do. But, both Dr. Moskowitz and Harlie's cardiologist, Dr. Gullquist agree that there is no need to rush her into her third heart surgery, the Fontan. She is still on the small side - just 23 pounds and she'll be 2 next month (Wowza!!!). And they tell me that there's no evidence to support that doing the Fontan earlier is any better than waiting till they are three years old. Plus, with our current situation, going up to DC for heart surgery would be, well... nuts. So, I feel very lucky at how all the timing of everything worked out.

So, it looks like we'll be looking at next summer for her surgery. Hopefully, she'll get a break from surgeries for a while. And if it all works out the way I want it to, she'll be trach free for the heart surgery, which will help for so many reasons.

So, the heart cath was done by 11am and they said that if all looked good they would discharge her at 5pm. That tells you right there how good she's doing because she's not been able to go home after a heart cath before! Anyway, she slept all day and her numbers looked good. We had to wake her up to get her dressed to go home (she immediately signed "Murphy" - it really is so cute how much she loves him). She slept in the car and when I got her in the house she signed "night-night", so I put her to bed. They said that the reason she's so tired is because they gave her a "cardiac cocktail" shot in her thigh muscle, which will take some time to wear off.

It ended up being a nice day, really. I got to sit around, read my book, take a nap with no laundry, or errands or chores to do. Not bad.

Tomorrow Murphy has his follow-up appointment with Dr. Lanning from his surgery last week. Hopefully it is healing the way it should. I certainly can't tell. So, I will feel better after he has a look.

Well, that's it for now. More later!

Take care,
Christy

Heart Cath Tomorrow

Harlie's third heart cath is tomorrow at MCV. I am not nervous at all. In fact, I am very hopeful that we will hear good news when it is done.

I know, last year's news wasn't that great. (You can read about that here if you have time on your hands.) But, that was BEFORE her lung surgery. We are all hopeful that her improved lung situation has helped her cardiac situation. We know it's improved because she is off oxygen and maintaining good sats (mid to high 80's). Which, we couldn't achieve prior to her lobectomies. So, it's safe to say that her one remaining lobe on her right side must be growing and is, so far, able to handle her oxygen requirements.

So, I'll let you know how it went tomorrow night.

I have to share a Murphy story before I go. The other night we were coming home from a friend's house and it was late. Tom was telling Murphy what we were going to do when we got home. Here is their conversation:

Tom: "Yes, you can have a drink of water, then I'll put cream on your pee pee, then it's night-night." (Murphy hates us putting cream on it because he's still pretty sore from his surgery last week).

Murphy: "No!"

Tom: "I have to Murphy. Remember that Dr. Lanning said that the cream will help your pee pee get better."

Murphy: "I didn't hear him say that." (Said with a very skeptical tone of voice.)

I guess our time of "tricking" him is running out. He is getting too smart.

Take care,
Christy

Surprise Baby Shower

So, yesterday, my friends threw me a surprise baby shower. And I was very surprised. And truly touched by their thoughtfulness and efforts. It was at my friend Heather's house and she is on vacation in Virginia Beach! So, she drove all the way back to Richmond to throw the shower and then drove back to the beach afterwards. And my friend Melissa, who lives in Suffolk (near the beach as well), drove up for the shower, too.

We got some wonderful gifts and I finally feel as if a baby is coming. So far, our house shows no evidence that there is a baby on the way. And that is starting to bug me. We've had two kids, and we've not been able to be prepared yet. You'd think by the third time around, we'd have it down. But, no. I am 34 weeks along now, six weeks away from my due date. I had Murphy at 35 weeks and Harlie at 37 weeks (but went into labor at 35, which they stopped and then I spent two weeks on bed rest). So, who knows when this baby will decide to come.

Anyway, back to the shower...

I have to share some of the gifts that my friend, Lindsay, gave me... along with some great baby stuff, she gave me a bottle of Sky Cherry Vodka and an 8-pack of Diet Coke - YUM (both of which are on the no-no list during pregnancy). How thoughtful is that? And she also gave me some meds for the baby, you know, Tylenol, Gas Relief Drops. And a bottle of stool softeners (which I presume is for me). She said she didn't want me to have to go buy them myself - now how thoughtful is that??? Gotta love it!

At the shower, they did an awesome thing. They wrote their own thank you notes, for me to just sign my name and mail. Now it doesn't get any easier than that. I just have to share a few of the notes because I think they are hysterical. Remember, the person it is written to, is the one that actually wrote the note...

Dear Heather,

Thank you for all the baby gifts! They are the best! Just like you! Thanks for being the best friend I've ever had!

Love,

Christy

Dear Marcy,
Thanks SO much for my favorite gift at my baby shower! It was like you read my mind! I also want you to know you are one of my favorite friends - I even like you more than Heather!
Love,
Christy


Dear Lindsay,
You looked so hot at my baby shower - you're doing great after that baby! I loved the tea ring and will invite you down for a Diet Coke cocktail come September.
Love,
Christy

Seriously, could they be any funnier? Everyone really went out of their way that whole day to make things happen for me (you know, lie, change plans, etc.) and I just can't tell you how heartwarming that is!!! So thank you to all of you!!! I am so lucky to have you all!!!

-Christy

She Swallowed!!!!

Yes, you read that right. She swallowed yesterday during speech therapy!!! Three times!!! I am SO thrilled. I just can't tell you how incredibly comforting this is to me. I was really worried that we would go months with no swallowing. Now, this does NOT mean that she can eat by mouth yet. We are still a long way from that. But, at least now we know that she can do it which means that in all likelihood she will swallow for a swallow study. So, the next thing I have to do is work in that swallow study. If she swallows during the study and they do not see any signs of aspiration, then she will be officially cleared for feeding trials.

What she swallowed yesterday was water thickened with a thickening solution designed for feeding issues. We used a special squirt bottle that places the water at the back of her throat, so all she has to do is swallow. If you just put water (or food) in her mouth then she cannot get the food to the back of her throat because her tongue doesn't know how to move food around. And getting that to happen is definitely going to take some time. So, I know we're still far from oral eating, but this is a HUGE relief and a HUGE step in the right direction! So, I am more happy than I can put into words.

One other thing that I am just thrilled about is that Murphy went to school today! Woo Hoo!!! Yesterday we took a walk to the playground at the elementary school down the street and then he played outside with the neighbor, and he did just fine. So I thought he seemed ready to go to school today. Hopefully he'll be just fine all day. They are learning about dinosaurs today (which he loves) so he should be very happy.

Well, that's all the time I have for now. I just wanted to share the wonderful news that Harlie swallowed!

Take care,
Christy

Murphy is miserable

Well, today is post-op day 2 for Murphy and I can officially say that he is miserable. Yesterday seemed to be going well. He even played a little with Harlie and walked around some (albeit on his tippy toes). He even said that he wanted to go to school. So, my rationale is that each day will be better than the last, right?. But, by last night, he was miserable. He wouldn't even let us put on his underwear! So, yes my kid went to sleep with just his pj top on and wouldn't let the covers touch him, either. Well, I will say this... to all of you who have a son, at least he won't be touching it any time soon!

So, no school again today. I don't think they would appreciate him walking around half naked - that being the bottom half, of course. I do ache for him, of course. No mom likes to hear her son cry, "my pee pee hurts!" a hundred times a day. But, it does make me realize that each person does have their own threshold for pain, that's for sure. I think of all the things that Harlie has been through and I am just amazed at what she can handle. I guess I've been "spoiled" in a way. And with her, I don't have to hear her whine or complain, she just goes along with her day. It's really amazing what the human body will adapt to.

So, for the past two days my kids have watched a lot of TV. Normally, a no-no as far as I'm concerned. But, I can't send him outside to play, that's for sure. And I can't exactly run all my errands, putting him in and out a car seat. His activity choices are very limited. And, quite frankly, I'm 8 months pregnant, huge, I have heartburn, and I'm tired. So, what's a few days of tv going to hurt? Sometimes you gotta do what you gotta do. Things will be SO much easier when the baby comes. Yeah, right. You got it - I've lost my mind!!!

Back to Harlie...

Every night after dinner, I take Harlie outside for a walk. At about 7pm the sun is off the street and it's been cooler so it's a perfect time to let her walk. My goal is to get her to be able to walk down to the cul de sac, and back. It's not that far - only about 9 or 10 houses one way. But there is a slight incline (which seems to bother her a bit). Some days she does really well, some days not. I have no idea what makes it good or bad.

Although last night, I can tell you what went wrong. She got distracted by a parked car and a kid's bike on the side of the road. For the life of me I don't get why she is fascinated with a parked car. She wants to touch it and walk around it. Seriously, this can't be normal! Well, not that I can ever expect "normal" from Harlie, so why am I surprised? And when I told her to come on and keep on walking and get away from the car - she was mad. She is the most stubborn child. So, once I finally got her to move on (by picking her up) we came across two bikes on the side of the road. Well, I don't know if I've mentioned it, but she loves to watch the kids ride their bikes. Okay, maybe not that. She wants to ride a bike herself. I can't tell you how many times she has tried to climb on Murphy's bike, which is clearly, entirely too big for her.

So, she ran toward the bikes and wanted up. There was no getting her to walk away from that. So, I had to carry her away again. She was not happy. And then she sat down and refused to walk. I know to a stranger I must look like a mean mom when I tell her she needs to walk. But, they are thinking I am pushing her physically, which I am not. She CAN walk! She just doesn't always want to.

Well, that's it for now.

Take care,
Christy

Murphy's Surgery and Harlie took some steps!

Murphy's surgery went "well" today. Although I'm not so sure he'd agree. He is not very happy about the pain. But who could blame the little guy? It was very strange to be there with him and not Harlie. The pre-op questions were a breeze!

And he was so good! I am so proud of him. We had to wake him up at 5:45, get him dressed and in the car and he didn't complain once. Of course he couldn't have anything to eat or drink - and didn't complain once about that, either! Unfortunately, we had to wait a long time for them to call us back - after 8am. And they finally took him to the OR at 9am. We said good-bye and the only thing he said was, "I don't want to do this" while holding back tears. I was so impressed with him!

The doctor said that each procedure would take about 20 minutes, so I was expecting to hear something within the hour. At 10am we got a call and the nurse said, "So we got started about 5 minutes ago." What? I had to ask, "What have y'all been doing for the last hour?" And she said "prepping." Okay. So I asked if he cried and she said no that he was just talking to all of them and playing with the mask. She said he was really good and funny. Well, that's good.

Then an hour later the doctor came out and said he did fine and everything went well. He explained his care to us and then we got to go see him. He was definitely not happy, but he was hanging in there, trying to be good. We got him home and he promptly threw up on the couch and Tom. Yeah, he wasn't feeling too well. I shouldn't, but I have to laugh. It's always Tom he throws up on. Well, I got more than my fair share with Harlie, so I don't feel too bad.

The rest of the day Murphy sacked out on the couch watching movies. Once I got some crackers in him, he started to feel a bit better. He is definitely feeling some pain. Ugh, the poor guy!!! It broke my heart when I had to make him walk to the bathroom. But we survived.

Of course today was Harlie's physical therapy day and Brandy said that it was her best PT session ever. And I missed it! Ugh! Harlie took 7 steps unassisted!!! My PT said that she thinks it is very possible she'll be walking by the time the baby is born. Wow. Would that be crazy great, or what? After Harlie woke up from her nap we had her walk between Brandy and I and she did great. So, hopefully it will just get better and better from here on out.

Well, it was a long day, so I'm turning in.

Take care,
Christy

Murphy's Surgery and a little vent

Sorry I've been such a slacker posting lately. Boy can I tell I am nearing the end of my pregnancy. I am just lacking the energy to type. Who knew writing could take so much effort?

Well, tomorrow is Murphy's turn to have surgery. He needs to have surgery because he has a communicating hydrocele. That shouldn't be that big of a deal, really. The bad part is that he is also getting a circumcision revision. Ouch. But he is normally a brave kid, so hopefully he'll be just fine. We started to talk to him about it today. Luckily the surgeon is the same surgeon that did Harlie's nissen, so when I told him that the doctor has helped Harlie before, I think that made him feel better. I guess the frequency with which we talk about doctors and hospitals, he doesn't seem bothered by it. Ah, I love our "normal".

And then next week we have Harlie's heart cath. And I think every week from here on out we have numerous doctor's appointments. And somehow I'm supposed to squeeze in a swallow study for Harlie so my speech therapist can be given the green light to put food in her mouth. I really don't know how in the world I'm going to get that in. I tried to schedule it myself last week, but they won't let the parent schedule it. Which makes NO sense to me whatsoever. I know all the details. And I have my very complicated calendar. I guess I will have to ask my speech therapist if she can schedule it when she's at my house this week for Harlie's therapy. Then at least she'll have my calendar in front of her. I did have to say to the lady who told me I couldn't schedule it myself that they are just making my already more difficult life more difficult, thank you very much. She said she knew and that she was sorry. Yeah, I'm so sure.

I think I'm just getting frustrated at the little things that could be different that would make such a BIG difference to someone like me. I mean, it's not like I just woke up one day and said, "Gee, I think I'd like to get a swallow study done on my kid, just because I've got nothing better to do. And that's just as much fun for my kid as going to Chuck E. Cheeses." Clearly, if I'm calling about a swallow study, I've already consulted with my doctor or speech therapist or someone of "authority" who told me to get the darn swallow study in the first place. Seriously, do they have a bunch of parents who are trying to get their kids in for swallow studies without their doctor's okay???? Is this some weird trend I'm not aware of?

And while I'm venting...I took both Harlie and Murphy to the store this weekend to get Murphy a pair of swimming goggles. I was feeling brave, and took them by myself (Tom was out of town). I let Harlie walk in her walker - she's getting better and better the more I expose her to the general public. So, we go in - and since it is very hard to control where she walks (without killing my back by bending over 50 million times to re-direct her) I ask the first employee I see where the kid's goggles are. Upstairs. Oh goody. Now I have to ask - why do they put the kids section UPSTAIRS? So every parent with a stroller has to go find the hidden elevator? Lovely.

So, this is something I never noticed until I had kids. The elevators in stores are NEVER located in a central area - they are always in some weird back corner. Like an elevator is shameful or something. Now, this is a pain in the butt when you've got a stroller. But, it is so much WORSE for someone who is handicapped. Of all people, they need to be as efficient as possible with their steps and energy. Now does that make any sense at all? And Harlie tires out so easily. I can't let her waste her steps! So I have to ask, why can't they put the elevator where the escalator is? Seriously is that an engineering impossibility??? Would those of us not handicapped really mind?? Okay, I'll stop now.

I should go anyway. We are about to have dinner and then we all need to get to bed early so we can get up early for Murphy's surgery. We have to have him at MCV at 6:30am. It is going to be very weird to not let him eat/drink when he wakes up. That is never a concern for Harlie. Ah, the bonuses of having a non-oral eater!!

Take care,
Christy

Happy Harlie

Today went great. Harlie is her happy self. As if yesterday never happened. She is doing great with putting things in her mouth.

Speech Therapy

Beth, our speech therapist, seemed really pleased. She showed me some mouth exercises to do on her. They are basically the same ones we did prior to her jaw surgery. Now that Harlie can open her mouth - wider than she ever has - we can see a lot more of her tongue than ever before. It is fascinating, really. I find myself trying to look inside whenever I can.

Keep in mind that Harlie has never licked her lips or moved her tongue, really. For her whole life, her tongue has been rolled toward the back of her throat. She's never used it to move food around, or feel toys. So, as a muscle, it is VERY weak.

So, Beth did some tongue tapping to see if she could trigger a tongue reflex. Basically when you put something in your mouth, the tongue should find it. The first time she did it, Harlie's tongue didn't move. Just as Beth expected, considering she has never really been able to move her tongue. The second time she did it, Harlie moved her tongue towards the object in her mouth. Beth said sometimes that can take a month of therapy - and Harlie did it the second time!

The best part is that she is so incredibly tolerant. After 9 weeks of no stimulus, you would think that she would be way over-sensitive, but she's not at all. No gagging or anything. And tonight, I went on ahead and got out the tooth brush, and she went right to it, as if there was never a break. We are all very excited about all of this!!!

Auditory Brain Stem Response Test (ABR)

Basically, her ABR study yesterday offered us NO insight whatsoever. It was a big, fat waste of time and effort. In the most basic of summaries - the audiologist said that Harlie has mild hearing loss in her RIGHT ear (her good ear). I was very unpleasantly surprised at this. She said that she has TINY ear canals and had to use the infant sized supplies to test her. But, after she said all this she said that a blocked ear tube or fluid in the ear could cause the delay in her hearing response - but she didn't look inside to see if that was the case. WHAT?!?! Are you kidding me?

Then she said that she got no response at all on the left ear. I asked if that means that she does not have an ear drum or inner ear in there and she said she didn't know. WHAT?! Really, it's not even worth going into more detail. She didn't know anything other than that a bone anchored hearing aid (BAHA) could work for her. But they don't actually anchor it until after they turn 5, so before that kids have to wear a headband.

Whatever. I'll clearly have to re-test her somewhere else. So, we still don't know anything. Not that I'm THAT surprised, really.

Okay, well, it is late. I'll have to save the rest for tomorrow.

Take care,
Christy

She's Wireless!!!

Well, today went pretty good, overall. We got there at 5:45am. It's not the early part that's hard, really. It's all the getting up to change over her feeds that wears me out. But, I suppose getting up at midnight, 3am and 4am is going to get a lot more common very soon, so I better get used to it.

Here's Harlie and I in pre-op. She wasn't very happy. She kept going to the door and signing "outside". I let her open the door and she looked out into the hallway and started to cry. I suppose she realized there was no "outside" out there. Just more hospital. She is definitely more aware of where she is and what's going down...



Anyway, the anesthesiologist this time asked us if she would be okay when they took her away from us to go to the OR. I said she will definitely cry. (So I took the opportunity to tell her about our experience with them kicking us out of the PICU last time and that I think it scarred her for life and that other hospitals have stopped kicking parents out - not that I think it did anything at all, but, hey, I tried!) So she suggested that they give her some Versed through her feeding tube to help her relax and not remember anything. So, we said sure. Tom couldn't stop laughing. Although it was funny to see her so happy all of a sudden (that stuff kicked in very fast) I couldn't help but feel like it was just wrong to see your 22 month old drugged.

But, it definitely helped. When the nurse took her away, she just went with flow. So, I think it was a good move. Anything to help her not be afraid.

I was worried when the surgeon came to look at her before going into the OR. The first thing he said (other than "What happened to her chin?" - which was only the 5th time we heard that question. After seeing her post-op from jaw surgery I don't even see a regular boo boo now.) was, "Wow, she's loosened her wires a bit." Huh, didn't notice. But when I looked closely, you could see that her bottom teeth were no longer on top of her top teeth. Uh oh. So, of course, my worrying gears started going.

But, after he was done, he said she looked good. Maybe her wires loosened when she hit her chin the other night. Which totally explains the bleeding from inside her mouth and why she cried for what I thought was an unusually long time. She's very tolerant of pain and doesn't seem to be bothered by much. Anyway, that would be a good thing because it just happened, so no real damage done (we hope).

He said that her jaw felt good and strong and that her teeth looked fine. Her jaw has recessed a bit, but that is to be expected (which is why they wired her bottom teeth on top of her top teeth). Unfortunately, because her jaw could still recess some, we have to give her 6 months before starting the decann process (getting the trach out). Although this was hardly surprising, we're still slightly disappointed. I'm not going to lie, I had dreams that our life would be closer to normal sooner rather than later, but it is not to be - yet.

He was able to remove the wires without having to make any more incisions, so we are very happy about that. He also said that her scars under her jaw are "unacceptable" and that they are definitely going to have to repair them when she's closer to 5. That girl's 5th year is going to be a busy one!!! Don't they realize that she will be in school then and she shouldn't miss that much time??? We've already got her scheduled for her eye repair and prosthetic ear for that year.

Anyway, she was "awake" and not very happy when we got to see her. So we held her for a while and she fell asleep. Her mouth is wide open... like she doesn't have the strength to close her jaw. I guess it's pretty safe to say that her jaw muscles are pretty weak right about now. So we got a good look inside her mouth and she has a lot of teeth! Her mouth bled for a while so she looked pretty rough for a few hours. As you can see...

I think it will take a little more time to see what she's really going to look like. Patience...

At one point the nurse did something to make her cry - and I mean REALLY cry. And, we could hear her!!! It was unbelievable! I was so happy I cried, too! It was SO wonderful!!! She continued to make "sound" throughout the day as long as she exhaled hard enough. It sounds almost like a wheeze. But, it's sound and I'll take it.

Overall, she bounced back pretty quickly and was happy to get home. All day long she kept putting her fingers (and anything else she could get her hands on) in her mouth. It is so nice to see!!! It has to feel good to her! After her bath I gave her one of those sponge swabs on a stick (the kind you get at the hospital if you can't have anything to eat or drink) to clean her mouth out of any left over blood. I was afraid she would gag - because it's pretty large for her little mouth. But, she took it and bit on it and moved it all around with no problem. So, we have high hopes that she will make some good progress orally. After those spots where the wires were heal a little, I'll start to brush her teeth again. Ahhh...

Luckily, Beth, our speech therapist will be here in the morning. I can't wait to see what she has to say.

Well, she also had the ABR test done - but I am way too tired to write anymore tonight. I'll have to tell you about that tomorrow.

Take care,
Christy

Just a few more hours...

Since the hospital here in Norfolk doesn't have wireless, I thought I'd give a quick update before I go to bed.

We have to be at the hospital at 5:30am. So, we drove down tonight and are staying at my friend Melissa's for the night. She will keep Murphy for us tomorrow while we're at the hospital with Harlie. Harlie's scheduled OR time is 7am.

She will be getting her wires removed and will also have an Auditory Brain Stem Response test (ABR). That will tell us if she has an inner ear in her left ear. I haven't thought much about that, really. I guess because I have pretty much been expecting to learn that she doesn't have the ability to hear. Not that I'm being negative, just realistic. Even if she does have an inner ear, surgery to give her a canal to enable her to hear is still very new to the medical field. So, that decision would not be an easy one. Although, it is my understanding that if she does have the ability to hear (even without a canal) we could give her a bone anchored hearing aid. So, I think there are some options, but no sense in getting all caught up in that until we know more.

I will say that it will be very nice to finally know, one way or the other. It is hard to believe that we've made it this long without knowing. I remember right after she was born - I wanted all my questions answered immediately and I just didn't think I could take the waiting. But here we are 22 months later and we have waited just fine. I surprise myself at the amount of patience I have been able to learn!

Well, I better get going. Although I have to get up in less than an hour and a half (at midnight) to turn off her night feed and start Pedialyte, then get up again at 3am to turn off the Pedialyte. Not to mention that I feel like I'm 5 and tomorrow is CHRISTMAS!!! I just can't wait to see her smile without the wires!!!

I'll update as soon as I can! Take care,
Christy

Tomorrow's the BIG day!

So, tomorrow Harlie gets her wires removed and will finally be able to open her mouth! WooHoo!!! It is so hard to believe that 9 weeks have already gone by. And she handled it like a champ. The other night she yawned. Well, you know when you try to not yawn? And your face gets all funny looking as you try to keep your mouth closed? Well, she looked just like that. How frustrating is that? She's gone 9 weeks without being able to truly yawn. Ugh. Boy am I glad that I just saw that the other night and not 9 weeks ago. It would have bugged me the whole time that she couldn't yawn appropriately.


So the other night I was giving Harlie a bath and she was getting a toy out of the basket and fell over and scraped her chin. (Hey, she has a chin!!!) It bled like crazy (thanks to the daily baby asprin), as well as something on the inside of her mouth. Poor thing. Now with her constant drooling, the scab looks all weird. Hopefully it will heal just fine anyway.


Oh! So a friend and I were out shopping on Friday when two people came up and told me that they read my blog everyday. I am so glad that people are coming up and introducing themselves to me! So, thanks Heather and Amy (and Beth from the other week)! I told Tom that I really have to start getting out more so I can meet more people!

Well, I have to go. I have more to talk about, but I have lots to do before we leave (either tonight or tomorrow depending on when we're supposed to have her there). Hopefully I'll find out in a little while what time.

Take care and talk to you later!
-Christy