A Good Update.

This post is so long overdue that I have no idea where to begin!

First, I think I'll start with Harlie's overall status.  A few weeks ago I was really down in the dumps about where we were.  I just wasn't prepared for the ten steps back post-surgery.  You might think that after 30 of them I would have the whole thing down-pat.  But, I don't.  Each surgery is a whole new experience.

But, I am so happy to report that Harlie is doing... GREAT!  Seriously!!!  It's like she saw how sad I was and said to herself, "Okay, I guess I should give mom a break, she looks like she's going to crack".

A little more than a week after that post, I could see an improvement in her drooling.  I didn't want to get my hopes up, so I didn't say anything.  After one day of improvement, she would have a day of no improvement.  This went on for about a week.  Then one day, she came home wearing the SAME clothes that I put on her in the morning.  And then I knew!!!  She figured out how to swallow!!  There are no words to describe my relief and happiness.  No. Words.

We see her feeding therapist on Thursday for an evaluation to see where she is and where we need to go from here.  I am so, so happy that she's able to swallow for this appointment.

Academically she is doing great, too!  I don't know which is more shocking - her ability to swallow or her academic progress!

The problem with her academics has been her lack of willingness to participate.  I think most of her teachers (and us) believed she was capable - she just didn't want to show us.  Over a week ago, she came home and the report from her nurse was that she just flat-out refused to do what her teachers told her to do.  Well, clearly, we can't allow that to continue.  Her favorite thing in the world is the computer.  So, I told her she was not allowed to get on the computer that day because she didn't listen to her teachers.  I told her that wasn't allowed and she's at school to learn and work hard and saying no isn't an option.  She was very upset.

But, the next day she listened!  And followed instructions!  Last year she struggled with beginning and ending sounds.  You know, like mouse starts with m.  But, in order to do that successfully, one has to know what "begins with" means and be able to hear the sound m makes.  If memory serves, she started to do it successfully a little bit at the end of the year.

But, look at her now...

Awesomeness!!!

I am so proud of her!  And another thing that I've noticed at home is that there is much less of a delay between me asking her a question and her answering.  There used to be a very long pause or no response at all.  She doesn't always answer me - sometimes she doesn't want to.  But, for the most part, if I ask her something, she answers in a timely manner.  This is a huge improvement!  And it seems that each improvement, leads to another improvement... which is a fabulous trend!

Another development is that we were able to get Harlie back on her speech therapist's schedule.  Her ST is awesome and I just knew that she would be booked solid.  But, somehow she found a spot for us and we are thrilled!  She's had two sessions so far, and they have both been wonderful. She's not perfect (Harlie, I mean) and doesn't always cooperate - but again, the improvement in her following instructions is remarkable (in my opinion).  So much time was spent on waiting Harlie out and trying to find something to motivate her enough to do whatever it was that Amy wanted her to do.  But, it seems there is very little waiting now.  And in her last session her not listening was her trying to be funny and joke around with Amy.  Overall, another huge improvement!

Last, but not least... Harlie has been able to wear her cap consistently for the first time since March!!!  A cap is a solid piece of plastic that covers the trach and prevents air from flowing through her trach.  It forces her to breathe - both in and out - through her mouth and nose.  It makes her voice so much more clear and understandable.  Even to herself!  So, learning to talk will come so much easier to her if she can wear her cap more.  I tried the cap on last week and as expected, she yanked it off immediately.  But, I knew she could do it.  So, one day we went to take Rooney for a walk and she wanted to take a toy with her.  I told her she could only take it if she wore her cap.  So, she put it back on, grabbed her toy and walked out the house.  She wore it for 45 minutes straight, with no problem whatsoever.  The next day at school, Terri put it on her at 7:30am and when she got home at 2:15pm she was STILL wearing it.

It is amazing to me how everything is falling into place.  Especially after how I felt just a few short weeks ago.

This little girl...

totally amazes me.  She really knows how to bounce back.

We go back to Boston Children's Hospital on October 19th for our follow-up appointment.  I am now looking forward to hear how they think she's doing and what's next...

I have much more to tell you - the We Heart Harlie 5k, Cooper's birthday (poor kid) and a whole bunch of other stuff... but it will have to wait for now.

Thanks for checking in!
Much love,
Christy xo

I'm so excited!

Harlie did GREAT during feeding therapy today. Just GREAT!! She had yogurt and thickened juice - and ate a total of 1.2 ounces!!!! HOLY COW!!! That's the most she's ever eaten!

Allison (her therapist) put the thickened juice in a squirt bottle. Here's what it looks like:



She also put yogurt in one, too. The squirt bottle helps us get the placement we want in her mouth. And then she had yogurt in a cup to give her on a spoon. We use a kitchen timer so Harlie knows that there is a start and end time, and she gets to press the button. We were doing about 12 to 15 minute sessions. Allison upped her time to 18 minutes. And she did great! Everything about this session was so exciting!

And close to the end of the session, Allison gave her a spoonful (a regular baby spoon, too - not that EZ spoon I mentioned earlier) of yogurt and Harlie closed her lips around the spoon and was able to take all the food off the spoon, and then swallow it! WOW!

The reason why this is so fantastic is because her lips are getting stronger. She used to not be able to do that. Since she's never eaten by mouth, all the muscles and workings that we take for granted are weak and uncoordinated for her. The fact that she could get her lips closed around the spoon is FANTASTIC! And then with food being in the middle of her mouth - for her to then swallow it is HUGE!!! We used to have to use the flat spoon and scrape the insides of her cheeks and teeth to get her to be able to swallow it. You would not believe all the muscles that have to work together to get the food from the front of your mouth, to the back and then to swallow. Seriously.

Another reason why this is so fantastic is because now we can let her feed herself some bites. What a difference this will make at dinner time! I was so excited to see what would happen. So, I put some yogurt in a little bowl and gave her a regular baby spoon and she scooped up some yogurt, put it in her mouth, and ate it. Just like a regular kid!!!! WOOHOO!!! She ate all of the yogurt in the bowl!!!

Allison was really excited about our session today, too. She said that it looks like we're going to start working on volume now. AND - she is going to up Harlie's sessions to two times per week!!! This really is so incredibly exciting for me - I just can't tell you!!!!

Of course I had to ask about the intensive feeding program. It is a 6 or 8 week program where you go there five days a week and spend most of the day there. She gets fed there throughout the day. It is a hell of a commitment, that's for sure. I really don't know how we're going to manage when that time comes, but like so many things in Harlie's life - we'll cross that bridge when the time comes. All I know at this time is that's where we're headed when the time is right for her. Allison told me that there is about a three month wait. But, she wants to up her sessions for now and see what happens. Plus, with Harlie's upcoming spinal fusion and jaw reconstruction, it's probably best if we wait till all that is behind us.

All we have to do is get her to eat a few ounces several times a day and we could cut back one tube feeding per day!!! Can you imagine??? I can't think too far ahead, but as Allison said, "This was such a hopeful session."

Well, that's our exciting news. Now it's time to go and relax for a bit.

Thanks!
Christy

Busy Monday

Harlie had feeding therapy today for the first time since the end of May. And we got our original occupational therapist back! YAY! Allison started with us when Harlie was just a few months old. Last summer she went to work in the clinic at Children's here in Richmond. And it finally worked out that she had a slot open for Harlie.

Overall, Harlie did really well during therapy today. Allison said that she was excited about what she saw today. And she gave me some pointers on how I should manage Harlie's behavioral issues during therapy at home. Normally we weigh the food, the drink and her bib - before and after feeding therapy. That way we can see how much she's actually swallowing. Today she ate 9 grams (which is less than a half an ounce). I think some of my problem is that I wanted her to eat something measurable. And when she did, I wanted her to eat more the next time. I felt so much pressure to start to see her volume increase. But Allison said that if we work on her skills to eat that the volume will come naturally. So, I'm not going to weigh everything for a week, and then I'll start to spot weigh - to take some of the pressure off. I am sure that in some way Harlie could feel the pressure from me. So, hopefully that will help me relax a bit, which hopefully will mean better feeding sessions.

Murphy started swimming lessons today. He's already told me numerous times that he doesn't want to go back. We told him it's important that he knows how to swim. To which he replied, "But I already know how to swim"! Nice try.

You might remember that he had a week of sports camp at the YMCA a couple of weeks ago. He was not a fan. And barely participated. Well, last week, every time we went to the gym (for me to work out and for him and Cooper to play) he would sing from the backseat, "YAY, no more sports camp"!!!

And then when we left the gym this morning to go to swim lessons I asked him if he had fun playing. He told me that there was a boy playing with a blue car and he wanted to play with it, too. He said that the teacher made the boy share the toy with Murphy. Then he told me "but sharing was not my idea. I wanted him to give it to me". Nice. Ugh - sharing. That has got to be one of the hardest concepts for a kid to learn.

On to my Dad... a couple of weeks ago he went to his doctor and told him that he had no energy and that he was getting concerned that he wasn't gaining his weight back. So, they ran some tests and did a colonoscopy. They found a tumor and scheduled surgery - which was today. He did very well. They removed the tumor and will biopsy it. We should know the results Wednesday or Thursday.

There was some concern about his gall bladder, but during the surgery, the surgeon decided to leave it alone. My Mom said he already walked around a bit today, which is great. He just can't eat anything for a while, and then will only be able to eat liquids. Then I think on Thursday he can start to eat solids again. Crazy! He said he was starving when I talked to him tonight. He sounded great, though. So, hopefully this will give him his energy and appetite back. I think they were thinking he would be in the hospital until Saturday.

Well, that's it for tonight. Please keep your fingers crossed that the results of the biopsy will be good.

Thanks,
Christy

Mad, Mad, Mad, I say!

I've officially HAD it with this nonstop, horrible, vomiting! I find myself thinking, "if I have to watch her vomit like that again, I'll (blankety blank)". But, I can't say that because I KNOW that I will have to watch her vomit again. And again. And again. And again! UGH! WHY????

When she vomited as a newborn, I hoped that once she sat up, it would help. Then at 12 months old, she learned to sit up. But the vomiting didn't improve. Then I hoped that walking would help. Well, she walked and vomited some more. In fact, she can walk AND vomit at the exact same time. You try it! I bet it's impossible! That's my girl.

Of course we also tried every formula made (including breastmilk). After all, these are all the clear solutions to a typical child's reflux issues. No such luck.

We also tested out different feeding pump rates, and medicines. Saw doctors and specialists and performed tests. Until last May, when we had no choice but to try surgery. There. Problem solved. Right?

NO!!!! No. No. No. No. No. No. No. And HELL NO!!!

Since August 2008, the vomiting has gotten progressively worse. It's kind of snuck up on me to be honest. It is really amazing how you can get used to something over time. And how I have been able to deny how bad it's gotten.

At this point, I don't know what to do. We've been transitioning her from Peptamen, Jr. (very specialized in that it's already so broken down so her GI system doesn't have to do so much) to Pediatric Compleat (less specialized and more like a blenderized diet, which is our long-term goal, and less broken down so her GI system can begin to learn to function more normally). In the weaning process, we mixed a little of the Compleat with a lot of the Peptamen, Jr. and then over time changed the ratio. It's very hard to tell at this point if her vomiting has gotten worse or not. I simply can't tell anymore.

So, just for kicks, we tried giving her straight Peptamen, Jr. (with NO Compleat in it) just to see if that made a difference. Nope. Still vomiting like no tomorrow.

So, what now? Continue with the weaning? Go back to Peptamen, Jr.? If she's going to vomit anyway, does it make a difference? UGH!

I'm sure you're wondering... "why is she asking me? Geez, woman! Go see a doctor for crying out loud!" Ahhhh, if it were only that easy.

Funny how we think that doctors know everything. Until we find out that they don't! Especially GI docs. Really, the GI system is still so much a mystery. Kind of like Mars. We know it exists, we know a little bit about it. But that's really it.

We've seen them. Several of them, in fact. None of them have been able to tell me anything that I don't already know.

Doc: She has severe reflux.

Me: Wow!

Doc: And delayed gastric motility (her system takes a little longer to digest food).

Me: Ohhh!

Doc: And she will probably outgrow it at some point.

Me: Fascinating! Tell me more!!!

Doc: There are tests.

Me: Well, that's good!

Doc: But they don't really answer any questions. They just cost you a lot in time, effort, comfort - oh and money. But, you've got plenty of all that stuff, so it shouldn't matter.

Me: Great! When can we start?

Doc: Well, it takes months of scheduling. Perhaps you'll have an answer before she gets married.

Me: Will my sweet girl be walking the halls of her high school one day carrying a bowl for her vomit???

Doc: Well, I've had years and years of education and training. I don't know.

Me: Oh, I feel so much better now. Thank you, Doctor!

So, I'm sure you're thinking, "What was it that set her off"? "What got her panties all in a bunch"?

Well, since you asked...

Things have been going so great with feeding lately. I've really been in heaven seeing food go in her mouth, and not come back out (well, not immediately, I mean).

Then yesterday, she decided to start gagging when I put food in her mouth - then, of course, spit it right back out. At first I thought I just had bad placement in her mouth. No, it didn't matter where I put it, she gagged. Now, she has NEVER gagged like that. So, I suctioned her trach thinking she just had too many secretions to handle the food, too. Nope. Didn't matter.

So, now I'm thinking... "What the blankety-blank"?! We take a few steps forward and then a million steps BACK? Oh no, sweetheart. Don't even think about it.

So, today we do another feeding session and Thank God, she swallowed some without gagging. Whew! Because I just can't go back to her not swallowing. I just can't!!! That would be too, too cruel!!! But, then she gagged. And then threw up. A lot. And I mean, A LOT. It just kept coming. It was awful. And I was heartbroken. I am heartbroken.

What happened? She's not sick (that I can tell). And at the beginning of the session, I think she was trying to tell me she wasn't up to it. She had her head down with both hands covering her mouth. Now, I know that's not using her signs, but that's communication at it's finest! But, I didn't listen. I can't always listen to her. If I did she'd probably still be using her walker. After all, I'm her Mom, I'm supposed to make her do things that she needs to do, even if she doesn't want to!

Tomorrow we have feeding therapy at the feeding clinic in the Children's Hospital. I can't wait to see what happens...

She's EATING!!!!

I seriously just can't believe it. We went to Harlie's feeding therapy yesterday. I told the new therapist that she swallowed the day before. So, I fed her the first bite or two - and yep! She swallowed it! And the therapist took over and Harlie continued to EAT every bite. So, I think I can officially say that she's EATING some food by mouth!!! WAHOO!!! I just want to tell everyone I see and dance around all day thinking about it!!! It IS the start of something BIG!!!

She even took a few sips of thickened water and swallowed that, too! The therapist tried several different spoons (which places the food in different areas of her mouth to see where her strengths are) and she could pull the food off the spoon by closing her lips completely around it. All of this is HUGE!! Because she hasn't eaten by mouth - all of her mouth muscles are very weak. So, her being able to close her lips around the spoon is huge progress!

At the beginning of therapy she weighs all the food and drink and then after therapy, she weighs what's leftover. She even weighs her bib before and after as well so what comes out of her mouth and lands on her bib gets accounted for. Well, her bib had NO food on it! And all total she ATE half of an ounce!!! It was measurable!!! How in the world did we go from NOTHING to eating half of an ounce???

Was it watching Cooper eat? Did she just decide she wanted to? Was it a miracle? Maybe it was a combination. Regardless, we are so happy!!!

The only thing I wish is that Beth or Allison (her feeding therapists from before) could have been the ones feeding her and watching her eat. They worked so hard to get her to this point. Allison started coming to our house when Harlie was just a few months old until last August. And Beth has been with us since before last August. I know they would have been dancing around with me! But, I know we'll see them again and I can't wait to show them how all their hard work (with Harlie and with me) has paid off. I am so incredibly thankful to them for constantly giving me the support we needed to get to this point!!!

So, what happens now? Our new therapist said that we need to do three feeding sessions a day and spend eight minutes on each session. I let her hit the start button on the timer, and when it goes off, she knows that we're all done. I've been feeding her stage 2 baby foods (just since I have them here for Cooper). And they seem to be the right thickness already, so I don't have to mess with the thickener, which is great. I just have to thicken her water (with Simply Thick or Thick-it). Regular water is just too thin for her to control in her mouth. So far, things have been going great! And for once, I don't mind doing the sessions. In fact, I'm thrilled to do them!

Okay, well, I'll stop bragging - for now. We have Murphy's birthday party this afternoon at the bowling alley. He's never been bowling before, so I hope he likes it. Hopefully I'll have some good videos and pictures later! I can't believe he'll be turning FIVE on Monday!

More later!

~Christy

Holy Cow!!!

You won't believe what happened today. I gave Harlie some baby food - by mouth - and she... gulp... SWALLOWED IT!!! It's a miracle!!! Seriously, I couldn't believe it myself.

I put a spoonful in - and it didn't come back out. Then she signed "drink" and I gave her the squirt bottle (it's a soft plastic bottle with a straw out the top), and when she opened her mouth there was NO food hidden in there! At first, I really couldn't believe my eyes. So I looked at Brandy and and she said she saw it, too. We were stunned! So, I gave her another bite. And again, she swallowed it! I gave her a total of five bites before she said she was done. Well, really I gave her three and had to bribe her with going outside to get her to take the last two bites. But, it worked and she swallowed every bite - with no coughing!

And I know that at least once, she took a sip from the bottle and swallowed some water. I just can't believe it. What happened? How????

Well, after I put her on the floor and took off her bib, she started coughing and then hacked up all the food I just gave her. Great. Does this mean that she can finally swallow but her belly can't handle it? Ugh. But, Brandy had just fed her before I did her feeding trial - I just wasn't paying attention to the time. Well, I've never really had to think about it before as she's never really swallowed anything to amount to much. But I guess her feeding, plus the five bites was too much for her belly. So sensitive, that girl!

So, I wanted to shout from the rooftops that my dear sweet Harlie finally swallowed food - purposefully!!! And consistently!!! But so much of me is too afraid to let myself be too happy for fear that it was just some crazy fluke and that it won't happen again.

Well, all that excitement happened at around 3:15. So, at dinnertime, I thought I'd give it another try. And she swallowed again!!! I want to burst out into tears just thinking about it!!! She ate three bites. Three bites went down and stayed down. I waited to feed her her normal feeding until after we ate dinner so I could see if it made a difference. Who knows with her. But, that's eight bites total for today. Eight glorious bites. More than EVER!!!

Now we just have to wait and see what happens tomorrow. And it just so happens that we have a feeding therapy appointment at the Feeding Clinic with a new therapist (new to us, I mean). We're going to see her until our therapist has an opening (sometime this summer). Harlie hasn't had an official feeding therapy appointment since February. Maybe the break was good for her.

Please keep your fingers crossed that this wasn't just a fluke and that this is the start of something BIG!!!

Swallow Study

Harlie's swallow study was yesterday at St. Mary's. Overall, it went well, I think. It was awful to torture her like that - she did NOT like it at all! But, I think we got some good information that will help us work on her feeding trials.

She had a modified barium swallow study. They put barium in various foods (to try different textures) and then she sat in a chair that made her eye level with us standing in front of her. The scary thing for her was that she was in a small space with the x-ray machine behind her and on both sides and open in front of her so her speech therapist could feed her. As Beth fed her, the radiologist would turn on the x-ray machine so we could see the barium go in her mouth and down her throat. I wanted to take a picture of the monitor because you could see all the pins and screws in her jaw from her jaw reconstruction surgery. But I didn't get my camera in time and the staff was a little weird about me taking pictures.

Anyway, Harlie normally likes the feeding trials okay. She doesn't cry during the sessions and she is a willing participant. But during this study, she cried the whole time. Which did not help, but there was nothing we could do about it.

Basically, she did "swallow", about 6 times I think. But her swallow reflex is very delayed. I guess the thickened liquid goes down a ways until finally a swallow kicks in. What that basically means is that her muscles are all very weak (which we knew) and she is at risk for aspiration. But, the good news is that she didn't aspirate during the study. And considering she was crying the whole time, I think that's even better news. We also learned that she can only swallow thickened liquids (you thicken the liquid with a tasteless thickening agent) and definitely not pureed foods, like baby food. The problem with the baby food is that her tongue cannot get the food to the back of her mouth and with her delayed swallowing, it just doesn't work.

So, we will continue to do what we have been doing with our trials, continuing to watch her closely for signs of aspiration. Hopefully, we will make some progress in the next year. But this will definitely take some time. She'll have the feeding tube for a while I'm sure.

Well, that's about it for that. Today we have an appointment with a local ENT so she can get another ear tube here in Richmond.

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

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