Tom and some other stuff

Tom is doing well. He is a lot happier now that the dressing is gone. We were able to remove that this morning. Tom's mom and husband came down late Friday night. So, they were a big help. They left this morning.

I made a huge mistake by not getting some help for Friday night. I just didn't think it through. He was out of commission the entire day. And when I tried to feed Harlie her dinner (orally) I had to puree several different things because the first thing I made she wouldn't/couldn't eat. If there's any texture to it at all, she gags and wipes it off her tongue. And since I was in a hurry I probably rushed it and didn't mix it long enough. I don't have this whole pureeing thing down pat yet and I had a huge mess on my hands. And all the kids needed me at the same time, including Tom. After I finally got everyone bathed and in bed (not Tom) I came down stairs and realized that I never ate dinner myself. So I made myself a bowl of vanilla ice cream with some magic shell. Probably not the best pre-run dinner, but I didn't care. It was worth it.

I don't know if he'll be able to go to work tomorrow or not. That will probably be a last minute decision. Here are some pics...

Waiting for surgery...


Just out of surgery...


Just before dressing removal on Sunday...


No more dressing...


We got Murphy's teacher assignment this weekend. I've heard a lot of good things about her, so I'm really happy with who he got. And we have Kindergarten Open House on Thursday. I just can't believe that he will be in school a week from Tuesday! He seems too little! But I guess all parents feel that way. I just know I'm going to be a head case that day. I get all choked up just thinking about it! I guess it's a good thing I'll be very busy that week. Yeah, right. Just that week.

Well, this week brings some good appointments. We see her GI doc to talk about the vomiting (my favorite subject). Today I was doing an oral feeding and she was doing great. She ate a total of 4.5 ounces. Woohoo! Then she promptly vomited 3 of it back up. Ugh. I really can't tell you how much I hate her reflux. "Reflux" - such a tame word for what she's got.

Then we see a nutritionist to see about her new feeding plan. We've been keeping a record of what she eats and how much (we weigh everything - including bibs - before and after a feeding to get an exact amount). I just fed her dinner (orally) and her grand total for the day is 13.56 ounces! Her most yet! And if she hadn't thrown up those 3 ounces it would have been 16!!! Wow! At this point we're winging her tube feedings. So, I will be very happy to get a plan from someone who knows what she's talking about. Now, let's just hope she knows what she's talking about...

As always, more later!
~Christy

New Layout!

Well? What do you think of the new look? I know it's not perfect. But I'm still proud of what I've done so far. I still need to do some tweaking to see if I can get the words out of the borders so you can read it better. But, it will just have to do for now.

It's really amazing what I can do when I am all alone in a hospital waiting room with NO kids around.

The doctor just came out to tell me that Tom did fine. He had surgery on his shoulder. I feel terrible that I don't know the name of the bone. But, for once, this surgery wasn't my responsibility. Tom has had everything under control and I've just been going along for the ride. I do know that it was his A/C joint (not rotator cuff). The cartilage had worn away between two bones, causing lots of pain when he lifted anything with any weight (like our kids). So, they shaved some of the bone away to provide more space for free movement. That's the best I can do for a description.

He will be in some pain (due to the grinding away of the bone - Ew!). And he will be in a sling for a while. Unfortunately it's his right shoulder (and he's right handed). I think I'm just now realizing the impact this has on our family. I mean ME! Uh-oh. This means that in order to suction Harlie he will have to do it with one hand - and his left hand at that! This could be bad. Very, very bad.

Please pray for a speedy recovery. Seriously. Do it now. Please.

Thank you,
Christy

More devices...

Harlie had speech therapy today. So, we looked at a few communication devices. It's so cute to see Harlie so excited about it! And just after a few minutes she knew where certain keys were (even when Michele hid the picture) and she started to imitate the words. One of the buttons is a stop sign and, of course, it says "stop" when you push it. Well, after just a few times she started to try to verbalize "stop." It was so cute! And that's exactly what we want her to do.

Well, we looked at few devices, and most are just too heavy. If she can't carry it around, it just isn't practical. So the Springboard Lite was still the front runner. Until Michele thought about it a little more. She said that it can only go up to 36 keys and she said that Harlie will outgrow that in a year. Hmm. Good point. So, it looks like we're going to look at the next step up - the Vantage Lite. It can have up to 84 keys. It isn't as light (it's one pound heavier at 3 pounds, 6 ounces). But I think she can manage that just fine. The only problem is that the Children's Hospital here doesn't have one for us to see in action. And it's kind of hard to think about committing to a device that we haven't been able to use first. They are not cheap. So, I don't know what that means for us. I'll talk to her more about it next week.

Tomorrow Tom is having surgery on his shoulder. We have to be there at 5:30am! Ugh. I am hoping that they will have wireless there, so I can work on my computer. I am also hoping that his recovery will be okay (for him, and for me). Well, I have to get off the computer now.

OH! One thing I wanted to tell you about is that Harlie is doing GREAT with her oral feedings! On Tuesday and Wednesday she ate a daily total of over 12 ounces!!! WOW! And today she ate 10 ounces, but she missed an entire feeding because we had speech therapy during that meal. So, I think we can say that she's consistenly eating over 10 ounces per day by mouth. WOW! We meet with nutrition next week to figure out a new plan. It is getting very difficult to get in all her oral feedings and her tube feedings without just completely over-stuffing her! And, honestly, we are feeding her one way or another - all day!!!

Well, hopefully I'll have good reports on Tom's surgery tomorrow.

Thanks!
Christy

Eligibility Meeting

So, Harlie's eligibility meeting was this morning. I was a little anxious. I've heard some bad things about special education services in my county. Plus, I had no idea what to expect.

Well, I am very happy to tell you that it was as wonderful of an experience as that kind of thing can be. There were six of us total (counting myself) and everyone was very nice (including myself). We went over the reports from the speech and physical therapists that evaluated her over a month ago. I have to say that I was very impressed with the detail in the reports. And they seemed to very much remember the evaluation, which I thought was good.

They showed me her scores from the "testing." The average range for kids is between 85 - 115. Her Total Language score was 69, Auditory Comprehension was 73 and her Expressive Communication was 71. Clearly all lower than the average range. I know why, of course, so the numbers shouldn't bother me. I know she's smart, she just can't get it out of her head yet. But seeing the numbers, being in a room discussing her challenges, and hearing "this states that Harlie is eligible to receive special education services" just made me so sad. I am so happy that Harlie is doing so great. She's far exceeded every one's expectations. But there are moments when I just wish that things could have been different. Better. Normal. Like what most people get to experience. But clearly, that is not the way it was supposed to be. Anyway, so I cried a little bit. Which made me feel so stupid. I tried to hide it, but then they handed me a tissue. Part of it was sadness, but part of it was relief that we all seemed to be on the same side, wanting the best for my sweet girl, and that I wouldn't have to fight for services for her. Wow.

And as an added pleasant surprise - she also qualified for physical therapy, too! So, the speech therapist recommended that she receive two 30-minute sessions per week and the physical therapist recommended one 30-minute session per week. That's way more than I expected. I was just hoping for one 30-minute speech therapy session. So, I'm thrilled. Now the tricky part will be scheduling all of this therapy! Hopefully she will be able to receive therapy at Murphy's elementary school, which is at the end of our street (walking distance). That way Brandy can walk her down vs. me having to drive her some where else.

Oh! And the physical therapist that was there suggested she get some adaptive seating during her speech therapies due to her spinal issues. She said that when she observed her last month that she noticed that she "side sits" and that she's clearly compensating for her curved spine and rotated hips. So, she said it's possible that sitting in a seat for a longer period of time might not be possible for her. WOW! That totally makes sense! Not to mention that my speech therapist has had some difficulty keeping Harlie in one place during her sessions. That would totally explain her "ants in her pants" behavior!!!! WOW! So, they said a physical therapist will have to observe her speech therapy session to see what they think. They said if she's having to work extra hard to sit in a chair that it might not allow her to concentrate on speech therapy because she's uncomfortable or just working so hard to stay balanced. Seriously - WOW!

And they said that we need to have an occupational therapist evaluate her at some point, too, so we can address those areas if needed. The only occupational therapy she's gotten so far has been concentrated on feeding. So, they want to see other areas of OT like fine motor skills. Aren't you impressed? Because I am. Very thorough they were. So, now she has an IEP (Individualized Education Plan) that spells out specific goals we want her to accomplish. And it will be reviewed in six months.

Anyway, beginning a few weeks into September, Harlie will have a total of SEVEN therapy sessions per week! Yes, in FIVE days she will have SEVEN therapy appointments:

2 one-hour feeding therapies
1 one-hour speech therapy
2 30-minute speech therapies
1 one-hour physical therapy
1 30-minute physical therapy

And somehow I will try to keep two half-days per week untouched for preschool. Ugh! I really don't know how I'm going to juggle it all. And to make things even more complicated I am trying to get Murphy into a regular swim class that meets twice a week. Oh, and I'm training for a half marathon so I have to run three week days per week (long runs on Saturday) - no joke. I guess I will just see how it all works out, and then go from there. They said that I should hear from the school therapists by the end of next week to find out what times they are available. Until then, I'll just keep my fingers crossed that they have times that work out for us.

So, I will leave you with a quote I found in my calendar the other day. I'm thinking that it fits pretty well with today's post.

Don't ask for a light load, but rather ask for a strong back.

~Anonymous

Ahhhh, this is the life!
~Christy

Harlie's First Dental Appointment

Last Thursday (August 20th), Harlie had her very first dental appointment. I was pretty darn nervous. While I tried to think positively, I had fully "prepared" myself for major damage and decay in there. Here's why... I've heard that Goldenhar kids tend to have bad teeth.

1. The teeth are overcrowded because of the underdeveloped jaw. There's just not enough room in there.
2. For some reason, they tend to have thin enamel, which wears away fairly easily with constant vomiting (years, and years of daily vomiting). Seriously, the amount of vomiting I'm talking about would blow your mind.
3. She doesn't eat by mouth. And eating by mouth and chewing actually helps keep your teeth clean.
4. For the first two years of her life, we couldn't get in her mouth to brush her teeth. We tried, and did the best we could. But, because of her bone anomalies (missing part of her jaw structure on her right side), opening her mouth wide enough was impossible.
5. There's spotting on her front tooth, and with the millions of antibiotics and medications she's been on, I thought they might be to blame.

So, while I tried to think positively, I knew that I had to brace myself for something ugly.

I've been going to the main children's hospital here in Richmond for a while now - for nutrition appointments and feeding and speech therapies. It is not a full service hospital (like in DC). It provides outpatient services (therapies, feeding program, etc.) and it is a long term care facility for children who cannot live at home due to their complex medical needs. And every time I go there, I walk by a sign that says "Dental Services." Finally, I stopped and made an appointment.

They were AWESOME. I will totally take Murphy and Cooper there from now on. Seriously, this doc was GREAT! She asked me to tell her a little about Harlie and to tell her my concerns. She really took the time to explain everything to me - and what it means for Harlie. She told me about how most antibiotics are fine (there is really only one that does damage to the teeth, and it is only used in absolute life saving situtations because it has many bad side effects). So, the spotting on her front tooth is not due to her meds. And she told me to brush with a little baking soda once a week. Good to know.

So, she did her exam and said that her teeth LOOKED GREAT! I couldn't believe it! I still can't believe it! She didn't see any evidence of her enamel wearing away due to the vomiting. Wow! The only thing I can think of is that she's been on Prevacid since she was about 8 months old or so, so maybe that's helped keep the acid in check. At any rate, I am very happy. Then she showed me how to brush her teeth and sent us on our way. We'll go back in six months. Way cool. Seriously.

Now tomorrow I have Harlie's Eligibility Meeting to see if she qualifies to receive services from the public school system. All I'm hoping for is that they will give her speech therapy. Common sense would say that OF COURSE she qualifies for services! I mean, DUH! But, evidently it isn't that easy. This meeting has been weighing on my mind for several weeks now.

The thought of me sitting in a room full of people making a decision about my daughter when they haven't even met her, just kind of gives me the creeps. It's just a weird thought. They are going to read some stuff about her, have me talk about her, and then will determine what services she needs, or doesn't need. If they decide that she does need speech therapy, then we will write her Individual Education Plan (IEP). If they decide that she doesn't "need" any services, then I will have to appeal. Because, clearly, she needs as much speech therapy as she can get.

The whole process is just weird. It makes me feel like we are being judged. Like I am being judged as a mom and caregiver. And like Harlie is being judged as a little girl. I know it isn't really like that - but that's how it feels. All her doctors and any who know her, knows that she needs speech therapy (along with a lot of other stuff). But this group of people will ultimately make the decision. Kind of makes me think this is how socialized health care would feel like. Ew!

Well, the meeting is in the morning and I need to finish "preparing." Wish me luck!
Thanks,
Christy

Communication

So I have a lot of catching up to do since I've been absent from my blog for a week. I think I'll start with the most exciting thing first.

So, I've been thinking a lot about our communication with Harlie - and about her communication with us. I think signing has been wonderful. I can't imagine what our past two years would have been like without it. However, while I love it, I just don't think it is getting the job done anymore. I think it has come time for me to consider a communication device. She's almost three, and her exposure to people who don't know sign is growing. And I really feel like she wants to say more than just the signs she knows.

Once a month I get together with a group of moms who have special kids, too. And during the last dinner a mom told me about her experience with a communication device. She thought it was very beneficial to her daughter and she saw major progress after a short amount of time. All the benefits she mentioned are things that I really feel like Harlie needs (and us, too). Of course, a communication device was suggested by our speech therapist and she even brought a few for us to see. But that was a long time ago, and I just wasn't ready. But I am now.

So, I called our speech therapist and told her. She was SO excited! I think she knew all along (as well as our last therapist) that this was the direction in which we needed to go. And, even though they were/are right, I am very glad they let me try it my way first (with sign) and let me come to this conclusion in my own time.

So, last Thursday she showed me this new communication device called the SpringBoard Lite. I loved it! It is only 2.5 pounds and she can carry it around all by herself. And she took right to it, too! Within minutes she could say she wanted to play with the doll and change the doll's clothes and then pick which article of clothing she wanted to change.

What's so exciting is that it will open up her expressive communication so much! She can only sign what we teach her. And that's it. She can't sign something she overheard someone else say, something her teacher taught her or something she heard on TV. And there's only a few of us that would understand her anyway. Talk about limiting!

There's a button on this device that is a picture of a little girl. So, let's say she goes to a doctor's appointment and someone says to her, "Hi, what's your name?" Well, she can touch the little girl and the device will say, "Hi, my name is Harlie." Then the person could ask her, "how old are you?" And she could touch the button that has a cake on it and it would say, "I am 2 years old." Now how cool is that? That's a whole conversation that she can't have now. And this way she can talk to other kids, too!

Now if we could just get our hands on one to keep! Unfortunately, that takes some time. First our ST has to show us several different devices (ugh!). Then once we decide which is the best for Harlie, then our ST has to write a letter of medical necessity. She said that will definitely NOT be a problem. Then it goes to our insurance for approval. Once approved, then it gets ordered. THEN it takes 6 to 12 weeks to come in!!! Holy crap! So, hopefully we can get started this week. Now that I've made the decision and I've seen it in action - I WANT IT NOW!

And now that she is starting preschool - I think it is going to be essential. Yes, she starts preschool at Three Oaks Montessori School on September 8th (the same day Murphy starts kindergarten). WOW! She will go two half-days per week - Tuesdays and Thursdays. I will drive Harlie and Brandy (her nurse) to school each morning, and then go back and pick them up after lunch. The challenge will be keeping her therapy and doctor's appointments out of those time slots! Already her speech therapy conflicts on Thursdays (which we're working on fixing). But some doctors don't give you much choice on appointments (they only do clinic on Tuesdays, for example).

There are so many positives to her starting preschool. But the major ones (other than her getting an education) is that she will be able to "eat" with the other kids. So, during snack and lunch, Brandy can give her oral feeding then, while Harlie is watching other kids eat, too. I'm really hoping that she will see that other kids don't shake their heads or block the food from getting near her mouth, or cover their mouths with their hands. And the school has a small class (I think 13 kids total) and it is a quiet environment, which I think will help. With her only having hearing in one ear, if someone calls her name, she'll hear it, but she might not know which direction the person is calling from. So, with a lot of kids talking/playing in one room (like in most preschools) I think that would overwhelm her.

Anyway, her speech therapist said that kids love computers and that with Harlie's communication device, she'll be very popular and kids will want to talk to her. I just don't want them to be afraid of her. And it would be great if she could talk to them and let them get to know her personality. I really believe that once she is given a chance, you couldn't help but like her.

So, hopefully we can get things moving so I can see what my little girl has to say! See, isn't this exciting????

Thanks!
Christy

Murphy's Swimming Lessons - Video

Back in July we signed Murphy up for swimming lessons with the Morgan Swim School. Last summer he had his first lessons ever with them. And somehow, he got the same instructor again this summer. We were very pleased. Murphy really liked her and I think she's great (Camille). Last year he had to overcome a lot of fear, which took a while. This year, he walked right in, saw Camille, and got right in the water with no hesitation. It was great!

Well, he now loves swimming! He told me the other day that it is his most favorite thing to do. Tom was a swimmer as a kid (I was not) so maybe he'll take after him. He ended up loving it so much that we signed him up for another session. And you wouldn't believe this, but we got Camille again! I don't know if they did that on purpose or if it was just a major coincidence, but either way, we were thrilled.

The Morgan Swim School also specializes in kids with special needs, so I am really hoping that one of these summers I can video Harlie in the pool.

Anyway, here's a video I put together of him learning how to swim. We are so darn proud of him. And we are so happy that he loved it and now loves to swim. Thank you Camille and Morgan Swim School!