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!

DC appointment

Today we went to the children's hospital in DC for an appointment with her general surgeon. He is the one that did her lobectomy in August of 07 and her bum repair (ahem, anoplasty if you want the real medical term. Although, clearly, I much prefer "bum repair") in October 07.

To give you a very brief explanation - her, ahem, anus, was not located in the right place when she was born. It was too close to her girly parts (another one of my preferred medical terms). But the muscle that normally surrounds the opening was located in the right place. So the hole and the muscle didn't match up exactly, instead they overlapped a little. He did surgery to move the hole into the muscle as much as possible. It still blows my mind to think about moving a hole - how in the world??? Anyway, the problem is that since this surgery wasn't done until she was 12 months old, she has to learn how to control the muscle. And this will take time. And there is still an area around the hole that doesn't have muscle around it. Yeah, you see where this is going?

So, basically, the muscle that is around the hole has to build up the strength to compensate for the area that has no muscle. And her brain and her bum need to get in line and work together. I was told today that for kids that have had this type of surgery, that it usually takes an ADDITIONAL TWO YEARS to become fully potty trained! So that means she might be fully potty trained by age 5. She definitely has the whole pee thing down - she stayed dry last night, we drove two hours to DC, stayed dry during the trip, stayed a few hours there, drove home, stayed dry, etc. She's so close!

He told us (Brandy and I) that we need to have a lot of patience and not make her feel bad for her inability to control her bowel movements yet. And, as I already knew, we need to be VERY careful not to let her get constipated - ever! That would be very bad for her. And I have to say - that's happened once and it was a nightmare. I had to call my friend, and one of Harlie's nurses to come over and help. It was traumatic for all involved.

Well, that's it for this post. Such lovely subject matter, isn't it? Well, it's either this, snot or vomit around here. Such a life of glam, we live!

Take care,
Christy

So much therapy...

...so little time. Harlie has had FIVE therapy sessions in the last three days! I don't know who's more tired - me or her!

But we had a good feeding therapy session today. She ate a total of 3 ounces! And she's been pretty consistent with being able to eat about that much for each session. So...we were able to make a nutrition appointment to get a clear plan to start to take away some volume from her tube feedings since she's getting more volume from her oral feedings. We will see the nutritionist the first week of September. I suppose we'll get some sort of plan to feed her three meals (start with oral and then finish up via the tube) and two snacks (maybe just formula with the squirt bottle).

While I'm excited with the progess, I'm nervous, too. This new plan will be a huge time committment. And as it is now, my days are so crazy, I am lucky to get in 2 or 3 oral feeding sessions per day. And that's with Brandy's help. As much as I hate the fact that my daughter hasn't been able to eat by mouth - tube feedings are a lot "easier" than feeding sessions. Her feeding sessions take a lot of time, patience, the right atmosphere, tools, etc. There's the pureeing, weighing, motivating, feeding, praising, dealing with behavior issues, and then the cleaning up. Because right now, I'm making a huge mess pureeing her foods. Bonus.

What an emotional roller coaster this whole eating thing is. I remember the first time I truly saw her swallow food. What an amazing feeling. Happiness on a level I simply can't explain. And while I am still THRILLED - I know that the work has just begun. Almost three years into feeding therapy. And the work has just begun. Holy crap. There are still so many hurdles ahead of us. I don't even want to think about chewing. How are we going to teach her to chew? And when? Will she stay on pureed foods for months? Years? Okay. I need to take a step back and not think like that. That's way too overwhelming.

One day at a time, they say.

Tomorrow - no therapies. No appointments (except for Murphy's last day of swimming lessons). Wow. I'm really looking forward to it.

Recap from the weekend

Wow. It's been another packed few days that left me unable to sit at the computer. Here's the quick recap:

Thursday, Aug. 6th - Harlie had a cardiology appointment (with her local cardiologist). He was a bit concerned about some leakage he saw on her echo last month that he had never seen on previous echos. So, they did another one and the leakage was very minor - so not to worry. Great. Because I really don't want to have to worry about that. I'm kinda busy right now.

Tom's sister, Kristie and her husband Dave, and her kids, Nathan and Tayne came to visit. They live in Erie, PA. We had tons of fun and, as usual, it made me wish his family could live closer to us. I consider myself extremely lucky to have such great in-laws that I love!

Friday, Aug. 7th - While Kristie and her family watched our boys (and Brandy and Dawn watched Harlie), Tom and I left town and headed to Virginia Beach for the night. WooHoo!!!! We went with a bunch of friends to see the Dave Matthews Band. It was great because it was 10 years ago that we all (most of the same friends) went to see the DMB right when Tom and I started dating, and before any of us had kids. It was our own little reunion and it was awesome! More on this later...

Saturday, Aug. 8th - We had to come back. And Kristie and I went to the mall with Nathan, Tayne and Murphy, while Tom and Dave hung back to smoke some ribs for dinner.

Sunday, Aug. 9th - We all headed out to the Mattaponi River for the day. Brandy and her boyfriend Joe met us out with his boat and Tom borrowed some jet skis so we would have three total. I really struggled on whether we should take Harlie or not. It's never simple with her. She doesn't do well in the heat or the bright sun (and it was a hot one - high 90s). Plus, I get the feeling that she's coming down with something. She's super junky and she's had a fever on and off for a few days. But, I just couldn't bear the thought of her watching everyone walk out the door just to stay back with me and Cooper. So, I set up a play date for Cooper with a buddy of his (Griffin, who just turned one in June) and dropped him off on our way out.

Harlie did GREAT and LOVED the boat. I think she really dug the wind blowing through her hair. She had ants in her pants and couldn't decide on which seat she liked the best. We took a third car specifically so I could leave early with Harlie whenever she was ready. I ended up leaving around 2ish, so she did well for three hours. The heat was a little much for her when the boat wasn't moving, though.

Today, Monday, Aug. 10th - Kristie, Dave, Nathan and Tayne left (boohoo). And Harlie had a very busy day. She had speech therapy from 9am to 10am and then feeding therapy 11:30 to 12:30. Then I took Murphy to his swimming lessons at 2:30. I also saw Cooper go from a sitting position in the middle of the floor (with nothing around to grab onto) to a standing position. Then he took a few steps. Wow. I specifically remember us working on that very move with Harlie. It took forever to get her to be able to do it on her own. And he just did it. With no help. No theatrics. No praise. He just stood up. Just like that. Crazy.

Tomorrow Harlie has speech therapy again. And I officially begin my training program for my first Half Marathon. I signed up for a training program with Sports Backers. So, we meet every Saturday for our long runs. I am very excited to be able to run with other people. Running alone gets kind of old after a while.

Well, that's all I have time for tonight. More later!
~Christy

Lots of stuff (and a new video)

So, what's been going on since my last post....

Murphy finally had his 5-year check up on Monday. He has really grown! He weighs 43.5 pounds and is 44 inches tall. That puts him in the 75th percentile for both. I was so surprised! Those are his highest numbers ever!

He's also started swimming lessons again. He is loving it! And we are loving him loving it. After the debacle of the YMCA's sports camp (which he hated) we are very grateful to see him like an activity. Did I mention that on soccer day (of the sports camp, which introduced him to several popular sports) he said he didn't like it because the other kids kicked "his" ball? Nice. Anyway, he loves swimming and he is now working on freestyle (complete with side breathing) and the backstroke. I'm working on a video to show after these lessons are complete (next Thursday).

Today his normal instructor (same one from the last session) was out and her brother was filling in for her. On the way home I was just making conversation and I asked him who he liked better - Grant or Camille? I was just curious to see if learning from a guy or girl made a difference to him. Anyway, he said, "Camille, because she's like a pretty girl." And the "like" in that sentence was a valley girl like if you know what I mean. Like, I'm so sure.

Cooper had an exciting event... he took his first steps on Sunday (when I was working, of course). I worked Saturday and Sunday for the first time since April and he chose those few hours to walk! But he's walked since then, a few times each day. He just turned 10 months! Murphy was 13 months when he started walking, and well, Harlie can't be compared, of course. So, I was surprised at his early start. I guess he feels like he's going to get run over if he doesn't get up and about. Hopefully I'll catch some video soon and post it.

Harlie's had feeding therapy twice this week already (with her therapist, I mean). Allison (her therapist) is trying to work her in anytime she has another opening. She is really doing great. She's definitely exhibiting some behavior issues, but still making progress. Allison wants to start working on her volume. She is consistently eating over two ounces at each feeding (even at home). And she said if she starts eating three ounces per feeding, we have to have another appointment with a nutritionist to start a plan to wean back her tube feedings and increase her oral feedings. Right now, with her tube feedings and her oral feedings (at least two per day, sometimes three) she should be gaining some good weight. But it's probably too much for her long term. We need her to be "hungry" for her feedings, so it only makes sense to hold back a little volume from her tube feedings.

And, today - at both feedings I gave her, she ate three ounces!!!!

I have started pureeing foods (what a learning curve that is!). For breakfast today, she had some pancakes with strawberries, syrup and milk (and a side of yogurt and juice). And for dinner she had mixed vegetables (broccoli, cauliflower and carrots) and a side of yogurt and juice. Out of both feedings, she only spit back out a total of three bites. The pureeing is an ordeal - it certainly is NOT easy. But, it's worth it. Although on the second day the blender ate the plastic ring that makes a seal. So now I have to find some replacements, but until then it's just going to have to be a little messy. Oh well.

Learning how much liquid (and what kind) to put in there takes practice. Right now there's a whole lot of opening, testing, adding a little milk or water, blend again, repeat, etc. But after more practice, I think I'll get a little faster, which will help. It's just that by the time I make her food, pour it into smaller bowls, mix her juice with thickener, weigh everything separately in grams, get out the timer, then feed her (we're up to 25 minute sessions now) it takes 45 minutes! And that's if I don't get interrupted (which NEVER happens). And I've found that it's best to feed her when there's not a lot going on in the house. And that makes it tricky, too. Most of the time my house is a little crazy.

I finally ordered her food thickener, which has helped. I was limping along with a dwindling supply, which made me ration it, instead of using it as necessary. But now that I have my shipment, I can thicken away to my heart's content. The other night we had some cantaloupe and I pureed that. But that needed some thickener. And she ate two ounces of that. It's been fun to give her some real food. Although I have to get over some of my fears. I thought for sure that she wouldn't even think of eating the mixed vegetables (but she did, twice!). And after the trouble and time of pureeing it, it is a little frustrating when she won't eat it. She wouldn't eat the beans I pureed the other night. In fact, she wiped what was left on her tongue off with her bib. Oh well. Don't know till you try, I suppose.

Today she had physical therapy. We've upped her frequency back to once a week till she fully recovers from heart surgery. She is finally walking up and down the stairs some (she flat out refused till just a couple of weeks ago). It is still so hard to know when she won't and when she can't.

And it's always interesting to see what Traci will use to get Harlie to work. One of the things Harlie won't do is walk down/up our driveway. It is a hill and she's uncomfortable going up or down it. So, she found something to entice her to walk it.



Ahhh, I can't stop laughing at the baby tumbling out of the cart. It's terrible, I know. But so funny. I hope you enjoyed it, too!

Thanks for reading!
~Christy

Upper GI

So, Harlie's Upper GI went well I suppose. She was scared but still cooperative.

They put some barium solution into her feeding tube while she stayed under the x-ray machine. There is a monitor that the doctor watches to know when to take the x-rays. Since Harlie was being so good and cooperative, I was able to stand on the side of the monitor more than I have in the past. Usually I have to stand behind the monitor so she can see me. Anyway, the doctor was great at pointing out what was what and what was going on. She's also the same doc we had in January for her last upper GI.



She stayed perfectly still for the baseline x-rays, before we actually started the Upper GI.





Anyway, for the first time ever (on a study, I mean), we actually got proof that she is refluxing. I mean, we already know that by the fact that she vomits, duh. But, every single time she's had some sort of study, she never refluxed during the study.

Her nissen is still intact, and the doctor said it looked pretty tight. But, some barium still made it's way past it and into her esophagus (but she didn't vomit). I think she got some good pictures of it for her surgeon to see.

Here's the issue: does it warrant having another surgery to make the wrap tighter? If it were up to me - and she didn't need to have another jaw reconstruction - I would say no. I can easily live with the amount of vomiting she does right now. A few times per day sure beats the 40 times a day she used to vomit. So, I'm happy.

Tightening it has some drawbacks (if it's even an option). If you make the wrap too tight, swallowing becomes difficult, if not impossible. And with all the progress she's made lately on that front, we don't want that to happen!

But, it's going to be up to her plastic surgeon. If she has the same surgery she had before, then her jaw will be wired shut for nine weeks and it will be safety issue (aspiration). The surgeon that did her last surgery would not even consider surgery unless she had a nissen. We meet with a new surgeon September 14th for a second opinion. And then after that, we'll have to make some decisions. As usual, fixing one problem, causes problems in another area.

I suppose it's possible to do the wrap tighter (surgery), have jaw reconstruction, wait nine weeks, remove the wires, then undo the tightness of the wrap (surgery). Because while her jaw is wired shut, she can't eat by mouth anyway, so swallowing won't necessarily be that big of a deal (other than her own secretions). But that sounds like a lot to put her through. But, she needs this jaw surgery to move forward. We can't put that off much longer. So, I don't know what we're going to do. I guess we'll just have to wait and see what the doctors say. I'm sure she'll go back on Prevacid. In fact, I went on ahead and did that today.

For the most part, I feel like I'm pretty patient with Harlie's stuff. But, the thought of waiting six more weeks to start the ball rolling on any front regarding her jaw is killing me. If we meet with this new guy and like him and his treatment plan for Harlie's situation - who knows how long it is to get on his surgery schedule. If we decide to stick with her original surgeon, then we'll still have to fix her vomiting - before he'll do it and then who knows when we'll get on his surgery schedule. The same might apply no matter who we go with. And we have to hurry up so she can get her spinal surgery. I have a feeling her jaw might just have to wait. Which also kills me. Ahhhhhhhh!!!!!