CT Scans

So, Friday was a long day. Just as I expected.

Plans were changed at the last minute, so we didn't have to leave until 7am (vs. 4am). At first I was glad. But, then I thought about it a little more, and realized I preferred the earlier time. The sooner we get there, the sooner we get to leave was my thinking. And we were in DC on a Friday. Not that any day is a good day to be in DC traffic, but Fridays seem particularly awful.

At first we went to CT Scan check-in, but were told we needed to go to Surgery (since she was getting general anesthesia). When we got to Surgery, they told us to go to CT Scan. Heh.

Then I told her about the anesthesia and she said she didn't have any paperwork on her so it would take a little while. Hmmmm. It took over an hour till we were finally called back to register! I will admit that I was a little mad. Okay, a lot mad. After as many conversations as I had with various nurses in the days prior to the big day, I didn't understand why the paperwork wasn't ready.

Until a nurse came in to do Harlie's history and physical.

She told me that earlier that morning she was going through her patient files and saw that Harlie was there for a CT scan (not realizing that she was going to get general anesthesia). She said that she thought that was a mistake since they don't do CT scans. She took a quick look at her file and said "thank goodness I don't have to do the paperwork on this one" and went on about her day. HAH! It was actually pretty funny. I can imagine that from a paperwork perspective, Harlie's a bit of a workload. Well, I don't really have to imagine. I have many 3-ring binders to prove it!

Anyway, here's Harlie and Brandy while we were just hanging out waiting.



Harlie was fine and playful until we got in the exam room and the nurse brought in the hospital gowns. Harlie took one look at the gown and started crying. But, it was a very brave cry. Just a tear or two with absolutely no sound. It broke my heart. For all she knows she's checking in for a week or two. She has no idea. What a way to live! But, as you can see, she seemed to get over it pretty quickly.







I love this one. She looks so curious about what the nurse was doing. I have a feeling she's going to be dangerous with all her knowledge when she gets older...



I'm hoping a few of these quick hospital visits and procedures will make her feel less scared when she sees her next gown. Which, with any luck, will be very soon (for a new ear tube).

Her ENT was able to look in her ear while she was out. He said that her tube has come out of her ear drum. So, another will need to be placed. He said that since this will be her third, he's going to put in a different kind of tube that's designed to stay in longer. He said there was no granuloma or blockage in her ear canal. Bummer. But he said that a lot of kids with craniofacial issues can't pop their ears. And since her tube has come out of her ear drum, maybe that could be contributing to her hearing problems.

The plan now is to schedule an OR time for an ear tube placement, and then immediately after, do an ABR test. At that point, we'll know exactly what we're dealing with as far as her hearing goes.

Oh, she had a lumbar puncture so they could inject dye for some contrast scans. Since she can't have an MRI, they did some other scans to hopefully give them as much information as possible. They told us to run and get lunch quick, because it would only take about 15 minutes till she would be done. So much work for 15 minutes of scans!!! Anyway, we hurried back and waited. And waited. Then the doc came out to tell me that it took longer than normal to get the dye in her spine "due to her anatomy." I'm sure.

Then at 4pm they let us take her home. Ahhh, 4pm traffic on Friday in DC. The best. We finally got home after 7:30pm. A long day. But now we can proceed with lots of things. And that's good.

She will see her plastic surgeon in Norfolk on Tuesday. She will see her orthopedic surgeon on November 3rd. And hopefully soon, she'll see her ENT for her new ear tube. And, with any luck, after each appointment I'll have an idea of when her surgeries will be. Which, I like, since not knowing kind of stinks.

More later!
Christy

Hearing test

Today Harlie had her hearing test. In brief, it showed a moderate hearing loss on the right side (complete on left of course).

I'm not that upset over it at this point. I really believe (hope) that it is because there is a blockage. She does have an extremely small ear canal, so I'm sure that doesn't help. Plus, the test was hardly scientific.

Anyway, here is a video I came across that helps you understand what a hearing loss is like.



I have no idea how accurate this video is (medically speaking, I mean). But it does help me understand why she can hear some things, and not others. She can hear Cooper scream/cry. But she couldn't understand a command like "show me your shoes" without signing.

Well, we have an early morning for her CT scans, must get some rest.

Thanks,
Christy

CT scans Friday

So, I got some bad news today. I was on the phone for a while today with the Radiology department at the children's hospital in DC. Harlie is scheduled for her CT scans at 8:30 am on Friday. Well, after several phone calls and difficult conversations - it turns out that we have to be at the hospital at freaking 6am Friday morning. Which means we have to leave at freaking 4am! This is going to cause one heck of a crummy chain reaction, that's for sure.

There is so much to this story, it is hard to figure out where to start! Honestly, I feel sorry for anyone reading this post. It might make your head spin.

Plastic Surgery

A few weeks ago, we got a second opinion from a plastic surgeon at the hospital in DC. The plastic surgeon that did her first jaw surgery is in Norfolk, VA. So, Tom and I went and met with the DC guy about Harlie's jaw. But he can't really tell us anything until he sees what's going on inside. Which means that he needs to see CT scans - current ones.

One thing to keep in mind here is that getting a second opinion is not an easy thing to accomplish. It took THREE months to get that appointment. In a perfect world, she would have gotten the CT scans first - but the surgeon needs to order them, and in order to order them, he has to see you first.

Spinal Surgery

She needs CT scans for her spinal surgery. I started working on getting the CT scans scheduled back in JULY! And she will finally get them October 9th.

Now I knew that the plastic surgeon would want them, too. So, I made the CT scan appointment for after the plastic surgeon appointment so he could put his order in and they could do all of them at once, to consolidate her anesthesia time.

In order to truly get a second opinion on her jaw, we'll also need to meet with her surgeon in Norfolk. And he'll need current CT scans, too. So, to avoid having to get CT scans done in Norfolk, I will get a copy of the study done on Friday on disc and will take it to him.

Backing up for a sec, her original CT scan date was Wednesday October 14th. When I called to schedule the appointment with her Norfolk plastic surgeon, his assistant told me his next clinic day (he only has clinic days once a month) was Tuesday, October 13th. The day BEFORE her CT scans! So, that would mean I would have to wait till November to see him. But, he isn't going to have clinic in November because of some other thing - so that put us in December! Ugh! More time wasted!!! I was terribly bummed, but what are you going to do? I scheduled our appointment for December, kicking myself for this whole second opinion idea. Keep in mind that our original plan was for her to have jaw surgery this fall - which clearly, didn't happen.

So, I thought about it and decided it could not wait until December. So, I called and rescheduled the CT scans for Friday the 9th, and then called back her Norfolk guy and she got us in to see him on the 13th. Perfect. Whew.

Today, in my conversations with Radiology, it turns out they had her scheduled for conscious sedation instead of general anesthesia. And as I've been told, general anesthesia is "safer" for her in that she is more closely monitored by an anesthesiologist and better equipment (?). I haven't done much research on this because, quite frankly, there's only so much time in a day. And really, it doesn't matter because if an anesthesiologist tells me it's safer, well, I'm not going to argue.

Anyway, they told me that they didn't think they could get an anesthesiologist on such short notice. Short notice? I started working on this in JULY!!! The scheduler knew about her complexities because she is the one that told me she couldn't have an MRI - weeks ago. Anyway, I tried to stress how important the timing was of these CT scans. If she can't get them on Friday, that will set us back an additional TWO MONTHS!

So, after a while they called back and got everything straight. And that's when they told me about having to be there at 6am. Brandy is going to kill me when she finds out. And I swear, home health nurses just don't get paid what they deserve. But, given the crucial timing, I'm thankful it will still work out, so I guess I shouldn't complain.

Oh, they also told me that she was scheduled for a lumbar puncture (ew!). When I asked why the woman said, "because the patient is complaining of back pain." WHAT? I told her she needed to double check that paperwork, as my daughter just turned three, and she hasn't complained to me - much less to someone up there. She called me back to tell me that she's getting that so they can put contrast in there for the CT scans. Oh, okay. Now that makes sense. All's good. Although the words "lumbar puncture" kinda freak me out. Which is kinda funny considering all the words I've heard and learned since Harlie's birth.

So, Friday is going to be a loooooong day. And for the chain reaction... Saturday morning I will get up early in the am to go run 9 miles. The farthest I have ever run in my life. Exciting stuff.

Then as soon as I get back I will have just enough time to eat, and get ready to go to work. I'm working this Saturday where I used to work - just helping out when I can. I will work 12-5. Then I will come home and get ready to go to my 20 year high school reunion. 20 years. Holy moly. Talk about a long couple of days with lots of stuff packed in them.

And, if you read - and understood - all this, I'm proud of you.

Tomorrow is Harlie's hearing test. I'm dying to know the results. Her appointment is at 3:30.

Well, that's it for tonight. And I said that I didn't feel I was up to blogging tonight. Ha! I'm sure I'll regret it in the morning.

Thanks,
Christy

Hearing test soon, Cooper and more pictures

Today we did our own hearing test on Harlie. When I got to her preschool, she was outside playing and her back was towards me. I said hello to everyone, and Harlie didn't turn around. So, Brandy told me to talk louder to see if Harlie would hear me. I talked loudly and then called Harlie's name (she was only a few feet away from me). Nothing. It wasn't until she turned in her playing that she saw me and then came over to say hello.

She is getting a hearing test on Thursday afternoon. I'll know the results right then, which seriously, can not come fast enough. And then we go to DC on Friday for CT scans of her face and spine. Last week, after her terrible speech eval, I e-mailed her ENT in DC. I asked him if he could come and look in her ear while she's sedated. He is so awesome that he is going to come over and see her between his OR cases. I'm really hoping he can tell me something.

Cooper is feeling crappy. At 2:30am on Monday morning, he spiked a temp of 104.1. I took him back to the doctor on Monday morning. Over the weekend his finger was looking a little rough. He scraped it on the ground last week. Here's what it looked like today...



It actually looks much worse in person - the photos lose something when uploaded to Blogger. And yes, it is infected. And he's now on antibiotics. And they are already helping. He hasn't spiked a high temp since Monday morning. Yay!!

So, tonight my friend Heather dropped by with her kids to have dinner with us. While chatting with her, I wasn't watching what Harlie was doing. And so she got her own snack. And obviously poured it herself.



She also found Griffin's abandoned sippy cup and pretended to drink out of it.



The girl cracks me up.



Thanks,
Christy

Apple Picking

So, Sunday morning Melissa and I loaded up Harlie and Cooper and went to Carter Mountain Orchard to meet Tom, Matt, and the kids. Just in case you haven't been - you should know that it's hilly. Really hilly. So strollers are challenging. But the fresh donuts made it worth it. And it was fun. And now we'll be able to eat fresh picked apples. Until we puke.

Cooper would be in this picture, but Tom was in some invisible race and left us in the dust.







See, here he is. Oh, it was so funny. He took a couple of tumbles down the hill. I mean, just a few feet, nothing serious. Like I said it was really hilly. One of his tumbles he was literally head over feet. Strangers laughed, I laughed, we all laughed. He was fine. Really.



Tom helped Harlie pick some apples. She was fond of this one and held it in her hands for the rest of the trip. And she pretended to eat it a few times.



Just the girls hanging by the pumpkins. Abby and Isabella gave Harlie that t-shirt for her birthday. Love it!





The Grossman's on the hayride.



And us on the hayride.



Me and Cooper, looking thrilled.



Okay kids, squnch up your faces! Perfect!





Another good day. I hope the kids had fun. And I hope they sleep good tonight. Although despite all reasons Harlie should be tired, she was wide awake until 11:30pm. She's the nuttiest kid ever.

That's it for tonight. More tomorrow!
Thanks,
Christy

Camping Trip

This is going to be our new annual tradition. The dads take the kids camping. And the moms get to spend some time together. Hopefully, each year, they can take an additional kid.

Our friends Matt and Melissa (she's the one that introduced Tom and I) came up on Saturday with their two girls, Abby and Isabella. They loaded up the car and the dads took the girls and Murphy camping.

Murphy packed his own backpack full of essentials...



The kids. Abby, Murphy and Isabella. Last year it was just Murphy and Abby. This year Isabella wanted to go, too.



The dads. This is Matt in front of the house. I mean tent. If you click on the picture you might notice the air mattresses in the tent. Ahhh, this just makes me laugh. This is so NOT how Tom used to camp. In his bachelor days, you know. Just funny.



And here is Tom.



On a bug hunt.



Hello cute little caterpillar.



Hello deer.



Look how close they got.



Nighttime by the campfire. With s'mores. The whole reason they love camping, I'm sure.



Breakfast. Yep, s'mores.





They also had pop tarts for breakfast, too. Murphy told them that brown sugar and cinnamon were - get this - SPICY! Oh, I think my kid might be a bit of a wimp. One day I'll have to tell you the story of Murphy and the microscopic splinter.

So, while they were camping and eating sugar, and lots of it, Melissa and I stayed home with Harlie and Cooper. Unfortunately, both Harlie and Cooper had their annual well checks on Friday. Which means they got vaccinations. So, Cooper wasn't feeling well. He woke up at 2:30am on Saturday with a 103 fever. I don't know what got into our kids but they were all up at various times, sometimes overlapping, from 2:30 to 6am. Luckily, it was a fall back week in my training program, so I only had to run five miles that morning.

Anyway, I was thinking we should go somewhere Saturday afternoon, but I just couldn't bear the thought of packing Harlie's bag and loading them up to go out. I feel like that's all I do - go and go all the time. And with Cooper so fussy, we just decided to take them for a walk and then stay home. Although I did arrange for childcare for the night so Melissa and I could go out to dinner together. Ahhh. That was nice. Of course after just two hours we were practically falling asleep at the restaurant, so we had to go home.

And then Sunday morning was almost an exact repeat of Saturday morning. Cooper awoke at 2:30am and between him and Harlie - I was up till after 4am. Ugh. I'll say this... Harlie might not understand every word - but she CAN hear. She obviously woke up because of Cooper's crying - two nights in a row.

And then Sunday morning we took the kids and met the campers in Charlottesville at the Carter Mountain Orchard for apple picking. More about that in the next post.

Thanks,
Christy

Speech Evaluation

Today we had Harlie's speech evaluation with her speech therapist. It was more of a formality than anything else, as clearly her speech therapist knows that Harlie needs and qualifies for private speech therapy. But, we have to go through the required process since she's three now and not in early intervention anymore. So, basically we're starting anew through our insurance than through the county.

However, Harlie was not cooperative, so it became much more than just a formality. A therapist came in with Michele (her speech therapist) to "test" or evaluate her. She asked her to do some basic things, like "Harlie, show me your shoes." Which she wouldn't do. Although she clearly knows what shoes are. Then she asked her to follow basic commands with blocks (like put them in the box, take them out of the box). Even that wasn't easy to get her to do. Then she showed her a flip chart with pictures on it. And she asked her "which boy is eating?", "which dog is the biggest dog?" and things like that.

The therapist who was testing her asked our therapist if Harlie's behavior could have been because Harlie was unfamiliar with her. So, Michele asked her some questions. This time she asked her while signing at the same time. And that helped a little. But the questions got more difficult. Like, there were five or six pictures on the page of various things (shoes, flowers, etc.) and the question was "what do you watch?" and the answer would be the TV. Well, she signed that question, and Harlie got it right. But, then she showed her a picture of a dog chasing a car and asked her "where is the dog's tail?" Well, she didn't get that one right. Or the next several ones.

She did terrible. It was hard to tell if she honestly didn't know or if she just didn't care. It really was terrible. And I hate the way that seeing her "test" like that makes me feel. I've always heard how smart Harlie is. And I've always believed that as well. So, to see her act the way she did was shocking. And I wasn't the only one who felt that way.

About halfway through the eval, Michele asked me about Harlie's past hearing tests. Here's the summary:

She passed a newborn hearing test shortly after her birth - in her right ear only. She has no canal on her left, thus no hearing on her left is possible at this time (and we don't know what's going on inside her ear, so potential for hearing in the future is unknown).

She had many ear infections on her right, so she had a tube inserted a long time ago.

Last summer (2008) she had an ABR (auditory brainstem response) test. It's performed when the patient is sedated and they look at brain wave activity. Well, the results of that ABR were not good. They said she had moderate hearing loss on the right side and complete on the left. I was shocked (about the right side, not the left) and didn't believe it to tell you the truth. And then the audiologist said that if she had an ear infection or something that could affect the results. Oh, and she didn't look in her ear, either, so there you go. I was not impressed.

About a month or so later, she was seen by her ENT (at a different facility than where she had the ABR test done). And her ENT said that her ear tube had come out of her ear drum and was stuck in her canal with wax and a granuloma had started to grow around it!!! So her canal was completely blocked.

Well, that explained the bad results from the ABR. So, her ENT removed the blockage, and the granuloma and after it healed, he put in another tube. And I went back to thinking that her hearing was just fine on her right side.

However, today It was pretty obvious that she was displaying signs that hearing was an issue.

Michele said that Harlie is so smart that maybe she's been getting by using other ways to figure things out - other than hearing, I mean. And she does understand sign language when she looks at you. And the results of this evaluation today made me really look at things in a new light. I think she hears the phone ringing. But then when we got home today, she didn't look when the phone rang. It could be that she doesn't care because she's not going to answer it, or talk on it. But I know that I've seen her look at her monitor when it beeps.

Michele also asked her, "Which boy is taking a bath?" Harlie saw her sign bath and immediately pointed at the right picture. She also asked her "Which boy is running?" She didn't get that one right. But, she doesn't run herself. Could that have affected if she knows what it is? Have I ever made a point to teach her what running is? Am I supposed to? I didn't have to "teach" Murphy that. I bet I'm going to over-think this.

I've just always thought she was ignoring me. But, now looking back, if she doesn't hear well, that might explain some things. In preschool, she hasn't wanted to participate in circle time. If they are talking about the day, or reading a book, and she can't hear them very well, of course she's not going to be interested.

And if I'm scolding her for something, or trying to get her to do something she doesn't want to do, she will NOT look at me to avoid my signing. It is VERY frustrating. And Michele said that children who can't hear will purposefully avoid watching signs. Which leads us to a behavior problem that I have NO idea how to address.

However, to a child with language problems, asking them a question can be very stressful. It's just not the same as asking a typically developing child a question. Language does not come easy to them. Tonight for example... I told Harlie to pick a book and I would read it. She brought me one and I asked her (while signing) "Do you want me to read this book?" I want her to nod her head or sign yes. She won't do it. She doesn't respond at all. Could it be that she doesn't understand she's supposed to answer? When I ask her if she needs to go potty, she'll shake her head no. So, I think she understands a question. Could it be that she's thinking, "um, yes mommy, duh, you told me to pick a book and you would read it." What is going on in that mind of hers?!?!?!

The bottom line is that she needs to be tested soon. Very soon. We need to properly address whatever is going on. I also need to contact her ENT and see if he can look in her ear to see if there's a blockage. That is my hope.

Overall, today was a difficult day. It is very hard to see your child not answer questions correctly. And basic stuff that she should know. And it is very scary to think that this is another thing that we have to address now. Which means more appointments, more tests, more results, more learning and possibly more action. And I can't help but think that it's my fault that she doesn't know more. Should I have done more? Done something differently? But how? Seriously! How can/could I do more?? And it's so overwhelming. And hard. So, so hard to have a child with so many challenges. Indescribably hard. Murphy and Cooper just do things naturally. And the learning just happens. I don't have to think about it. I don't have to ask professionals for help and advice all the time.

I was thinking today that everything I feel is in extreme - nothing is middle of the road. I feel happiness to an extreme. Or I feel devastation (heart broken even) to an extreme. It's an exhausting way to experience life. And today wore me out. I'll pick myself back up tomorrow. Don't worry.

Thanks,
Christy