Memorial Day

During Memorial Day weekend, Tom got out the blow up pool for the kids. Harlie just LOVED it! She couldn't get in fast enough. And even though her body temp was probably 90 degrees, she didn't care. I was a bit nervous at first. Um, water and a trach don't exactly go together. And the last thing she needs right now is water down her lungs. BUT, the girl needs to have some fun, too! So I let her. I think she knows that she shouldn't go in. I mean, fully in the water. On purpose. However, she did slip and fall in. Twice. She popped back up so fast that we didn't have time to react. And she coughed, and went on with her playing like nothing happened. Amazing.

Anyway, so she's playing and having a grand time. I'm sitting in a chair behind her just watching. She looks at me over her shoulder. Then goes to stand up, gets her balance, then drops the toys she was holding and then signs "fun" to me. I was so surprised! She's pointed at objects and identified them, asked for the tv, and asked for a diaper change, but her telling me that she was having fun, well, that was something! A spontaneous sign from her telling me how she was feeling. WOW! I loved it! And you really should have seen how much work she had to go through to be able to sign. It was a wonderful moment!!!

Then later during the weekend, we went to a friend's house for her birthday (I won't mention names, Donna). They filled up the pool there, too. And Harlie had a great time helping. At the end of the video, she signs "silly" - again all on her own, with no prompting! WooHoo!

Here are just a few other photos from the day:

Harlie spraying Zach and Murphy.

Me and Donna

Me, Donna and Dara

Feeding update

Just in case you're wondering how feeding therapy went yesterday...

it went great. She ate a lot. Her therapist said she did "perfectly." Well, except for the fact that after I put her speaking valve (PMV) on, she coughed, gagged and threw up. But, the therapist said that not counting that - which clearly wouldn't have happened had we not tried the PMV - she did great. She ate about an ounce total, which is wonderful.

Unfortunately, the therapist said that what was happening when I was feeding her was most likely behavioral. Which, quite frankly, pisses me off. There is no one in this world that does more for her than I. Yet, she has to give me this "attitude?" Not fair. Yes, I know it's normal. But still, why??? Anyway, she said that when she pushes me like that, then I have to push her right back. Ugh. Well, no one ever told me that being a mom would be easy. I guess I just have to know that fact a little more intimately.

She's actually done pretty well on the vomiting front. It hasn't been terrible. We've upped the Compleat ratio to half and half. I'm wondering if it might be better to try upping her again (maybe tomorrow) so that she gets more Compleat than Peptamen, Jr. Maybe the heaviness of the Compleat will stay down. Although that theory didn't work when I tried a blenderized. But, maybe I pushed her too fast with that. Ugh. There are SO many different variables and so many different ways to approach it. The over-analyzing has really made my head hurt.

Anyway, on another subject, I'm sick. I think it might be a cold or just congestion. I just hope I can keep her from catching it. Surgery is now just one week away. It's hard to believe it is here. Again. Anyone want to take any bets on if it will actually happen?

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...

Technical Difficulties

Sorry for not posting in a few days. I have so much to write about - and new videos and photos to post! But, I have been very busy trying to update my blog look. I found a blog template that I love, but trying to get it to work has been, well, work! And since I'm learning new lingo as I go, well, it's taking a considerable amount of time.

I might just have to scrap the idea until I have more time. But then I think that will never happen. But that's why I wanted to go to a blog in the first place - so I could change the look and functions of my blog! Ugh.

Maybe tomorrow...

Quick Updates

Well, I kept on thinking I would manufacture some extra time. HAH! So, I will have to give you a quick update instead of making my entry be long and drawn out and full of fun!

Back to last week (the really busy one)...

Murphy turned (gulp) 5 years old on Monday, May 11th. I wanted to dedicate a whole entry to this occasion (which I will, soon, I hope). His teacher at school asked me to make a poster board with some photos of him from birth to now and provide some basic info on how Tom and I met, how much Murphy weighed, etc. Of course, I waited till the last minute and was up way too late working on it. But, it turned out pretty good.

Then at school they had a "Birthday Walk" where they sit in a circle and talk about Murphy and what he was like and what he could do in each picture, etc. It was darn cute. Murphy made his own "birthday crown" and they took 5 walks around the earth (a globe) to show how old he is. I'm not doing a very good job explaining it, but it was very cute.

Harlie had a Feeding Clinic appointment on Thursday, May 14. She FINALLY gained some weight! She has weighed 24 pounds since September. Since the blenderized diet didn't work, I upped her volume hoping to at least stretch her stomach to help with the volume issue. Well, it certainly helped with the weight gain! She gained 1 pound, 12 ounces and now weighs 26 pounds! WooHoo!

After talking with the nutritionist, we decided to try to wean her from her specialty formula (Peptamen, Jr., which is already broken down so much to make digestion easier) to a more "normal" formula called Pediatric Compleat (something closer to a blenderized diet). We're in the process now and it is going okay, I think. I've come to the conclusion that she's going to vomit, regardless. Which is a bummer and another hurdle for us to cross later...

On Tuesday of this week, Harlie had speech therapy and wore her speaking valve for over 30 minutes total. I was so happy. But, she hasn't let me put it on her since. Ugh. That girl...

And her feeding therapy has been going well, I think. The most she's eaten in a single session is a total of one ounce (30 grams). Which is great! But, today she did terrible and only ate 8 grams during each session. Ugh. Again - that girl...

Cooper is now pulling up to a stand all by himself. Tom walked in his room yesterday morning and there he was standing in his crib like a big boy.

I have much more to write about, but instead I will just leave you with some quick photos I took this morning.

Pulmonary Appointment

Today was the Carytown 10k. The temperature was good for running (60 degrees), but it was raining. That light misty kind of rain. In the materials, the course was described as "flat." Rubbish!

It was definitely NOT flat! And considering I had not been training for a 10k - a hilly 10k at that - I think I did alright. My last 10k time in March was 58 minutes, 18 seconds (an overall pace of 9:22 per mile). I did this 10k in 58 minutes and 45 seconds (an overall pace of 9:29 per mile). All in all, not too bad.

Anyway, to catch you up on last week's events...

Last Monday was Harlie's pulmonary appointment. It was a long one, but worth it. When we got into an exam room a man came in that we didn't know. He was there to do some carbon dioxide exhale test or something. Anyway, he knocked on the door and came in and Harlie walked right up to him and held out her right hand - for him to shake it!!!! Like a grown-up! It was the cutest thing ever! He was so surprised and shook her hand and said that she was the most polite 2-year old he'd ever met. It was hilarious.

Anyway, I went over everything with her doctor and his theory for the repeated pneumonia was something about bacteria that lives on her trach getting into her lungs. He took some secretions to culture and said that he wanted to see what bacteria was growing so he could prescribe an antibiotic to put her on - just in case - up until her surgery. He called on Friday to say that he was prescribing a med to be given through her nebulizer. The pharmacy had to special order it, so it will be here tomorrow. Unfortunately, her neb treatments (she gets two meds already, twice per day) take forever. Now I'll have to give her the two that she normally gets, then after that's done, I'll have to give her the new one.

He also wanted x-rays to compare to her last ones. So, that took forever. We knew the x-ray tech that took her films. Now that's just sad.

Her films looked great. So, he thinks she's healed well from her last pneumonia. Hopefully another three weeks and the neb meds will help keep her that way.

Now it's time to rest my weary legs.

Goodnight!

Speaking Valve breakthrough!

So, for another big jump forward - Harlie decided that she would cooperate a little with wearing her PMV (speaking valve). It is a little piece of plastic that goes on her trach - it allows air in but doesn't allow air out. So, she breathes in through her trach, but is forced to breathe out through her mouth and nose. The whole point is to allow her to make sound so she can learn to talk. Plus it helps to strengthen swallowing.

Anyway, since it is a totally different way of breathing, it probably feels weird to her and for the most part she doesn't like it. Of course, it could be that she just can't exhale enough - which would be hugely uncomfortable. Before, she wouldn't even let me put it on her. And sometimes the pressure of her trying to exhale would blow it off and it would go flying across the room. And she would gag and cough. None of this pleasant for anyone. Her ENT said that if she could tolerate it (meaning if her jaw was fixed and enough air could pass freely) then she wouldn't mind wearing it and decannulation would be in our near future (which isn't the case).

So, we try it, abandon it, try it again, etc. Sometimes I just don't feel like being disappointed, so I don't try it for a while.

Well, on a whim, I took it with me to speech therapy on Tuesday. Michelle put it on and Harlie didn't flinch - she just kept right on with her activities with Michelle - for at least 30 seconds (which is a loooong time)! We were so surprised and excited!

So, later on that day, I was doing our feeding session at home. I put it on her and she kept it on - without any visible discomfort for at least five whole MINUTES!!! HUH? Talk about excited! The only negative was that she wanted to "talk" the whole time (meaning she was making sound with every exhale, kind of like humming but with your mouth open). So, it was hard to get her to stop so I could put food in and have her swallow it. But, what a wonderful problem to have! I remember that our other speech therapist told me that she needs to learn to control her vocal cords so she doesn't make sound with every exhale.

So far, the longest she's worn it straight has been EIGHT minutes!!! Whoa!!! But, then she takes it off, and puts it back in its container, and won't wear it again. I guess she can't make things easy - it might throw us off.

Well, it's time to sign off. My friend, Heather, signed us up on Wednesday for the Carytown 10k, which is tomorrow! I didn't think I'd be able to run in anything since we were supposed to be in the hospital. Now we're doing the 10k tomorrow and the Run like a Girl 8k in two weeks! Eh, it'll be good for my stress.

More later!

Busy week

What a rough week. Everyday this week (more so than a normal week) I was rushing from one thing to another, with no break in between. After a few days like that, I start to get in a bad mood. Then I get angry at our life - which I do NOT like to do! I'm not even going to ask "why" because I already know that there's no answer to that. I just wish that EVERYTHING didn't have to be so hard.

And I wish that I could write that I was so busy carting the kids from one extra curricular activity to another, playgroups, the library, etc. But I'm not. That's not our life - yet. God help us when we finally sign up Murphy for something. I really don't know how we're going to manage that. But we'll cross that bridge later... It just makes me mad sometimes, that's all. And a week when I can't blog makes me mad, too. Writing about how I feel or what we do is therapeutic for me, and a whole week when I'm too busy, and then too tired, well, it just makes me mad.

I MUST figure out a better way to manage my schedule. I must work in at least one or two days a week where we have nothing scheduled - no doctor's appointments, no therapy, etc. I need at least one or two days a week to catch up on my "job" at home - ordering supplies, bills, phone calls, laundry, cleaning, etc. Maybe that will make me feel more in control of my life. But, I've said this before. And so far, I have not been able to do it. It never fails that something comes up and there another busy week goes.

Well, we did have another breakthrough on the Harlie-front. I'll write about that a little later!

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!!!

Preschool Planning

Harlie has been in our county's Early Intervention program since she was just a few months old. This program helps give children with special developmental needs the services they need (like speech, physical and occupational therapies). But the program is from birth to age 3. Hard to believe, but Harlie will be 3 in September. Which means that we need to start planning what we're going to do with her after she ages out of the EIP.

The problem with Harlie is that she needs these services, and will continue to need them for some time. But, she doesn't fit in with the special needs preschool classes offered through the county. Because she's cognitively aware, we don't even think she'll qualify. Which is a good thing, I know. But, I don't really know that a regular preschool program will be a good fit for her, either. For one, most regular preschool programs have large classrooms. And while she'll have to adapt to that environment by kindergarten, I don't think it would be a wise decision to put her in one now. She's still catching up after all, and her language skills are certainly an issue. Although as long as she has her trach, her nurse could go with her. But still...

I clearly need to do some research and put some time and concentration into this decision. I haven't made up my mind about anything - heck, I'm still in the information gathering stage. And our services coordinator with the county said she is going to meet with me and Harlie's speech therapist to put together some goals and try to figure out what our options are and what is best for her. We're scheduled to meet at the end of May.

I will admit that I'm feeling a little bit overwhelmed with this whole ordeal. Now that she's getting older, I think things are getting "harder" in a way. The decisions we make are vital to her progression and development and the system and finances all play a part (which doesn't help). Heck, if it were up to me and money was no issue, I would hire a speech therapist to work with her for an hour 5 days a week (right now she gets one hour per week)!

I think I saw something about home preschooling - where someone who's qualified (not me, of course) would come to our house for a certain number of hours per week. I don't know if that is an option for her, but I guess we'll find out soon.

It is comforting to know that when she gets to kindergarten, if she still can't speak, then the school will have to provide a sign language interpreter for her. Well, at least that's what I heard. I still have a lot of learning to do... and so does Harlie. I can't think too far ahead. Things could be totally different by then. I guess I should just stay focused on summer and fall. We certainly have enough things happening in that time frame to keep us busy!

Harlie talking

This is a clip of Harlie's speech therapy last week. I think she is doing great verbalizing. She certainly tries. And she's pretty loud - even without a PMV (speaking valve). Mostly we work on teaching her how to make vowel sounds. We're still a looooong way off from "talking", but she tries and that's what's important.

A lot of her progress depends on me (and Tom). But, I'll talk about that in another post. It's too late for that now.

Take care,

Christy

Kindergarten here we come!

Tuesday night (Tom's birthday) was Kindergarten registration. Wowzers!

We all took a nice stroll to the school (oh, I am SO excited to be able to walk him to school!!!) for the big event. As it turns out, registration wasn't that big of an event. Oh well. I have a feeling there will be plenty more big elementary school related events in our future...