Wednesday, September 30, 2009

Birthday Parties

Since Harlie and Cooper's birthdays are the 25th and 26th, we decided to do a combo party. It ended up being a lot bigger than we originally intended. But, we like to party. And Tom loves to barbeque, so there you go. He borrowed a friend's smoker, he took a day off from work, put on his overalls, and started smoking. It always amazes me how much time it takes to barbeque.

Evidently, smoking requires a lot of sitting and watching the temperature. Oh, and drinking beer and smoking smelly, disgusting cigars. And wearing horrid overalls.

You don't want to know what my laundry room smelled like the next day. My Febreeze plug-in was no match, I can tell you that.

Here's Cole and Murphy in our driveway.

I loved these cupcakes! They were so cute! Tom's sister, Amanda, made the cupcakes and cakes and we loved them! And they were yummy, too! The big cake was strawberry - my favorite!

Of course Harlie wouldn't touch hers.

But Cooper dug right in.

It's not a party until someone loses their clothes.

Harlie loved the keyboard that her night nurse, Dawn, gave her.

Harlie's team - her nurses, Jennifer, Brandy, Dawn and me!

This was a guest's dinner plate. We had to photograph it.

So, now Harlie is THREE and Cooper is ONE. So, so hard to believe. Cooper's first year just flew by. I feel like he was a baby for such a short period of time. He still cuddles, so that's a bonus.

And Harlie. Three!!! Wow. She's had a huge life crammed into three short years. And she's just getting started! She amazes me every day. What a lucky family we are!

Take care,

Thursday, September 24, 2009

Big Days are Here!

So, tomorrow is Harlie's THIRD birthday. And then Saturday is Cooper's FIRST birthday.

This will be a short post. The past several weeks are starting to catch up with me. I'm running more with my training, and my schedule is busier than ever. The combination is proving to be very challenging. I'm finding that I don't have the energy to invest in my posts the way I like. And I'm still behind on that. I still haven't told you about her plastic surgery appointment that was almost two weeks ago!!! That is so not like me! Which tells me that I am way overwhelmed right now.

Harlie is doing great in preschool. She has learned how to stand in line. Brandy told me that it took her a few times to get it, but she did. They stand in line to go outside for play time. The problem is that they have to put on their shoes to go outside and it takes a while to put on Harlie's shoes and ankle braces, so she ends up being last. But, Brandy said that she started to try to put her shoes on a little sooner than the rest of the kids, but that's sometimes hard when they are involved in an activity. But, Brandy said that when Harlie got that she had to stand in line, Harlie was so proud of herself. Thinking about that makes me smile. And that's exactly the kind of thing I wanted from preschool for her.

Oh, and today they celebrated her birthday. Brandy said that she knew they were singing for her, or to her, rather. Which I think is really cute. I'm anxious to see how she does on Saturday at her party.

And, as I'm writing about her preschool experiences, I'm realizing that I'm missing a lot of stuff. And that's really weird for me. Totally normal for a mom, I realize. Most moms can't be there for every first. But, so far, I've been there for everything. And now, all of a sudden, I'm missing stuff. Which is both good and bad. I feel very lucky that I can send her to preschool. Me missing this stuff is a sign that she's progressing - in a typical fashion. But, just like a normal mom, it's still hard. And weird. Very weird.

On Tuesday night her preschool had parent night. We went around the room introducing ourselves. When it was my turn, I added that if their kids were asking them questions about Harlie, I'm very open and would be happy to help them in any way I could. Several of the parents spoke up and told me about how their kids were so excited to have Harlie there. They said that the kids would ask them and the teacher, "Is today a Harlie day?" Seriously? Now how incredibly heartwarming is that?!?!?

Well, back to the birthday celebrations around here...

I can NOT believe that she will be THREE tomorrow! And then Cooper will be ONE on Saturday. It will be a busy weekend. Tom's family comes in tomorrow night. His younger sister (Amanda aka Aunt Mimi) made their birthday cakes. I can't wait to see how they look.

And then I run EIGHT miles on Saturday morning. EIGHT MILES. I am now in unchartered territory as far as running goes. I've never run that far. So, my training is getting a lot more exciting now. The half marathon is November 14th. And I'm really looking forward to it.

Well, that's it for tonight.


Monday, September 21, 2009

I am the WORST

cook. EVER.

So, dinner is a challenge in our house. As I am sure it is in most homes. And Tom usually is in charge of dinner. But, sometimes I feel bad that he has to come home from work and then cook dinner. And he has to figure out what to cook, too. I don't help much there, either. So, on occasion, like when he's going to be late or something, he'll ask me to make something.

So, today was one of those days. So, I look in the pantry and the only thing I could find is Shake and Bake. So, I decided to make rosemary and djion mustard pork chops (on the back of the box) with cous cous and some frozen vegetable. Easy.

Not so much. Evidently the pork chops are done when they get to 150 degrees. I cooked it according to the package directions. Not a good idea. The temperature of the pork chops when I took them out of the oven was 200 degrees. Oops. And then when I took them off the cookie sheet the breading completely stuck to the aluminum foil. Evidently I should have sprayed the foil with some sort of non-stick spray. Oops.

They were terrible! But, Tom said it was fine and so we ate dinner. They were very difficult to cut. At one point I saw Murphy trying to gnaw off a bite.

So, I learned some things. But Tom told me to just not try to cook meat anymore. Well, unless it is in a casserole or crock pot. Tom didn't tell me that last part, but I think in those situations it would be okay.

Well, on to the next thing...


Sunday, September 20, 2009

We had fun

Yes, we (Harlie and I) went and had a great time. Of course, we were late. Shocker there. Boy it was a rough time getting her in the car. It never fails that while I'm getting her ready she vomits or poops. Whatever happens, I have to change her clothes. And when we travel anywhere I put a pull-up on her. And when we went to the bathroom during the party I realized that I put the pull-up OVER her underwear. Nice.

Anyway, she walked right in the door like she owned the place. It was at one of those jumping places with all the blow-up stuff and slides. She had a great time - and a great workout. And so did I! She certainly can't go in those things alone. So, I had to crawl, climb and slide every where she went. So, as it turns out, there was no time for socializing. But, I have to say, everyone seemed really nice and totally accepting of Harlie. The birthday girl came right up to her as soon as we got there to say hello. How sweet is that?!

During the cake time, Harlie pretended to drink from the juice box. It was pretty funny. And I was shocked to see her take the fork and put some icing up to her mouth. Hey, it's a start! So maybe seeing other kids doing stuff will help us out some.

So, I'm glad we went. She had so much fun! And I was so glad that she got to have fun with ME! I'm usually the one making her do stuff she doesn't want to do. It was nice to have a little outing with just the two of us that was all about having fun.


Saturday, September 19, 2009

Decisions, decisions...

So, I've really been stressing over a decision the past few days. And I have to make a lot of decisions when it comes to Harlie. And none of them have been easy. Even when you think it should be. It isn't.

She was invited to a preschool classmate's birthday party. Yes, you read that right. And I've gone back and forth over to take her, or not to take her. Which, I know may seem completely ridiculous. But, I have issues. I've never been a very outgoing person. For those who know me, stop laughing. Seriously. I'm quite shy. And social engagements where I don't know people very well stress me out. I play like I'm totally fine and comfy and all, but I'm not. And it is hard work to look fine when you're stressing out!

And Harlie's only been at school for two days! What if the other kids don't want to play with her at the party? What if she feels uncomfortable? And I don't know most of the other kids or their moms, yet. Are they going to be uncomfortable with me and Harlie? Will they talk to me? Again, I know this may seem ridiculous - but I feel this way based on past experiences. That were not positive. And I don't know if I'm ready for this! To expose myself to new people and risk getting hurt. Even though Harlie isn't very aware of the stares or weirdness from other people right now, I feel it for her.

And the whole sitting to eat cake and drink a juice box is so awkward. I wonder when she'll look around and realize that everyone else is eating cake and she isn't. And I wonder if she'll care. I'm thinking she won't. She's that independent.

But, maybe going will help her classmates to get to know her - and her them. Maybe they'll see that she's a typical little girl, who likes to goof off, just like them. Maybe they'll figure out some way to communicate with each other if they get some extra time to play together.

So, I need to get over my fears. And not transfer them to Harlie. And let her have fun with her peers. And I need to give other people a chance. So, thanks to a nice nudge from a friend of mine, we're going. And we're going to have fun.


Wednesday, September 16, 2009

Spinal Update

As you may remember, Harlie still needs to have surgery on her spine. We've been seeing a local orthopedic surgeon for check ups. While I like him just fine, he only operates at St. Mary's Hospital. And that hospital simply cannot handle Harlie. So, Harlie's cardiologist in DC recommended a surgeon there, which works out great. I am definitely most comfortable with her having surgery there. We met this surgeon back in the spring. And she agreed with our local doc that surgery would need to happen sooner rather than later, meaning sometime this year or early next. She ordered x-rays, CT scans and an MRI.

But then she had heart surgery. At one point I was thinking that they could do all that stuff while Harlie was recovery from heart surgery. But during her recovery I realized that was not an option. She had been through enough and her healing was way more important than those studies. They would have to wait.

So, after numerous phone calls and a whole bunch of time I finally got the scans scheduled for October 9th. During the scheduling, she asked me a bazillion questions. One of them was, "does she have a pacemaker?" Well, not exactly. She has the leads, but they are not hooked up to the battery device yet. The leads were installed during her first heart surgery at four days old and were placed for future hookup, when needed. She put me on hold for about 5 minutes. And then came back to tell me that she cannot have an MRI. As long as she has those leads, she cannot have an MRI. Here's why. And I'm thinking that she'll have those leads for as long as she has her own heart. This is quite unfortunate. I had no idea this was the case. Not that it matters, really. We couldn't have done anything differently. Still, it's pretty scary to know that she cannot have an MRI. An MRI shows soft tissue, while a CT scan shows bone. And a lot of stuff can grow in soft tissue. And it doesn't make me feel very good about going into spinal surgery without them being able to see her cord clearly.

So, I've been speaking with the surgeon's coordinator about it. She's spoken with her surgeon and they are ordering some additional studies in hopes of being able to piece them all together to give them the best information possible.

Now, just today I realized that we don't have an appointment scheduled for after these studies are done! Can you believe that? Once she sees all the information we have to talk about what procedures she thinks Harlie needs. And then we'll need to set a surgery date. So, tomorrow I'll be on the phone to schedule that appointment. I just hope that I don't have to wait three months to get in to see her!

Tuesday, September 15, 2009

Harlie's First Day of Preschool

Yep. That was today. Harlie's first day in a structured environment. Here she is walking toward the school:

Brandy stayed with her the whole time, of course. She goes from 9am to 1pm on Tuesdays and Thursdays. I was thinking that maybe she would be somewhat cooperative with eating, so I packed her some food. I was hoping that being with the other kids during lunch would help her want to eat. Yeah, it didn't work. She's in quite a slump with oral feedings. But that's for another post some other day...

I will admit that the craziness of the day made me question my decision to put her in preschool. It adds a whole lot of stress, planning and logistical issues. None of which I need more of, trust me.

But, I know that she needs this. She needs to learn to follow instructions and directions. She needs to learn how to behave in a structured environment. And she needs an education. So, I'm going to give this a good try before I throw in the towel. Plus, I think she's going to love it.

She was so excited to see the guinea pigs. When she saw them she signed "bunny" and "cat" and I think some other animal. I guess seeing the animal for the first time was a little confusing.

When she went to the easel she kept saying "write". Funny, because I had no idea that she even knew that word. Which is why I say she needs a more "formal" education. It is hard to teach when you don't get the constant feedback that she's learning. I mean, I know that she is, but it's just not as obvious.

Brandy said she loved this workstation.

It looks like she enjoyed cutting the wooden fruits and veggies, too.

Overall, she did well, I think. She doesn't like cleaning up. But, that's not news to us! I'm very anxious to see how long it takes her to get on board and start doing it without putting up a fight. She's very independent. She walked right into the class and made herself at home. No issues whatsoever with me leaving or with seeing all the new kids.

I asked Brandy about a million questions. She said that the first time she had to suction her caused some attention. The kids came over to ask what that was and what she was doing. But, they seemed satisfied with the answer that it helps her breathe. One of the little boys was in the school last year with Murphy. He had seen Harlie before when I had her to pick up Murphy on occasion. He told Brandy that he wished that she didn't have that thing in her neck so that he could know what she was saying. That is just so darn sweet. And I wish the same thing, too!

And with our new routine today, Cooper had a hard time keeping up.

After we got home both kids were wiped out and went right to sleep. And Harlie never takes a nap anymore. So hopefully that's a good sign that she did a lot of learning!

More later!

Sunday, September 13, 2009

GI Appointment

On Tuesday, September 1st, Harlie saw her GI doc. We've seen him a few times. The first time we saw him was shortly after her lobectomy in August of 2007. At that time, he recommended a nissen fundoplication (which she ended up getting in May 2008) and a pyloroplasty. Pyloroplasty is a surgical procedure performed to widen the opening between the stomach and the small intestine. The opening between the stomach and small intestine is called the pylorus. The pylorus, or pyloric canal, is a short canal primarily made of muscle. The canal can become too narrow, in some conditions. When the canal becomes too narrow, food and liquids may not be able to pass. This can result in symptoms such as nausea and vomiting.

At the time of our fist visit, I said no to both procedures and went home to try different foods, meds, etc. to stop the vomiting. But, nothing worked.

Now she has a nissen (not working the way it should) and we're back in the same position we were in during the spring of 2008. She needs another jaw reconstruction, and we have to stop the vomiting to do it. Now that we've done the nissen, we don't have a lot of options.

So, back to the GI doc to see if there are any new options. He again mentioned the pyloroplasty. To which I said "no" again. If they could tell me that she has a narrowing that warrants that drastic of a procedure, then fine. But they cannot tell me that. And in her case, I just know that it would cause more problems than it would fix. So, therefore, it is really not an option.

So, after making him think a while about it, he came up with a gj-tube. Food would no longer go into her stomach, it would go straight into her jejunum (small intestines). The theory is that you can't throw up if there's nothing in your stomach.

After her lobectomy in August of 2007, while still in the hospital, they tried an nj-tube (which is a tube that goes into your nose and all the way to the jejunum. They didn't want to change her g-tube until they tested the theory first. But the nj-tube is not as secure - since she was almost one and could pull on it. Especially since she wasn't used to a tube taped to her face. So, it didn't work. She still threw up stomach acid. Of course, that was before she was on Prevacid, so maybe that would help stop that.

There are definitely some negatives:

she would have to go back to 24 hour continuous feeds - YUCK!
she would have to go back to wearing the feeding backpack all the time
she would have to go back to the formula that we just worked for MONTHS to get her off of (since it is already so broken down, it is better since her stomach can't help her intestines break it down)
It is going backwards in the sense that her stomach is not learning how to fill up and then empty, like normal

But there are definitely some positives:

it is only temporary (versus a surgical procedure like making the nissen tighter or a pyloroplasty)
it is not invasive (like a surgery)
it might just be the answer to stopping the vomiting long enough to get her jaw reconstruction done

So, I really think the gj-tube will be the best way to go. And I suppose we could get it enough before her surgery to give it some time to show us if it will work or not. Plus, I don't think we really have any other options at this point.

I told her GI doc that if it weren't for this jaw surgery, I would live with the vomiting as it is - just fine. Seriously. I hate it. But it's all we've ever known with her. And I'm sure she'll outgrow it. And he just looked at me. I said, "She WILL outgrow it, right"? And he said that he didn't know. Which, I guess kinda makes sense. It's hard to predict what's going to happen if you don't even know what's causing it in the first place. But, I still believe she'll outgrow it. I have to.

I also asked him about her Reglan, the medicine that she's been taking to help increase her motility (help move the food through faster). I don't know if you've seen the health alerts about it. But they're saying that it should be used for a short time only. She's been on it for two and a half years! So, even though it might be safe for her - I just see no reason for her to take if it does NOT help her. And with her vomiting all the time, is it even helping at all? He said he didn't think it was helping her. Certainly not enough to risk it in her case. So, he told me to take her off. And so far, I notice no difference. Other than it's one less medication to give her (which ROCKS). And that one had to be given every six hours. I do not miss it. And I don't think she does, either.

So, we wait to talk to this other plastic surgeon to get his opinion and then we'll make a decision. That will be nice. Just to decide and start moving in some direction again.

Okay, enough GI and on to something else...

Take care,

Friday, September 11, 2009

Reduced Nursing Hours

Geez. I have a lot of updating to do!!! I'll just start - but things might not be in the right order. Oh well.

So, I don't talk about insurance, or money or that kind of stuff much. I'm not sure why. Honestly, I think it's because I don't want to be judged about how we get things done, paid for, etc. But I shouldn't be ashamed or embarrassed. And I'm not. So, here's the deal...

We have private insurance through Tom's work. It is not cheap. It is actually quite expensive. However, I feel that we get a HUGE return on our investment. For our monthly payments from Tom's paycheck - we have gotten millions of dollars of medical service. Not too bad if you ask me.

We also have Medicaid. I'm not sure what you know/think of Medicaid or those that receive it. But we qualify for Medicaid through the Medical Technology Waiver. What that means is that we qualify for Medicaid - not because of our income - but because Harlie is on life sustaining equipment. The costs that go along with that are insane. Seriously. And that includes skilled nursing as well.

When we first brought Harlie home, a Medicaid Case Worker (she's a nurse and is assigned to us) came to our house and asked a bunch of questions. She completes a bunch of paperwork. One of the forms is sheet that has points for certain things. For example, she gets 45 points for having a trach, 15 for being tube fed, an X amount of points for an X amount of meds, an X amount of points for being on oxygen, an X amount of points for being on a continuous feed, etc. The total amount of points tells them how many nursing hours for which you qualify. This review happens every six months.

From the day we brought her home, till now, we've qualified for 16 hours of nursing per day (not that we use them all, of course). We had our review on Friday, September the 4th. And our nursing hours went from 16 per day to 10 hours per day. Which, really, is a good thing. It means things are good and that she's getting better and less medically dependant. Wonderful!

But, it also means that we lose our night nursing. She let me give our night nurse (Dawn) a two week notice. So, we have until Friday, September 18th.

And honestly, I think I'm okay with that. I'm ready to have my house back at night. We have been so incredibly lucky to have found wonderful people that want to help Harlie, and us. And they have all been very respectful of our privacy (or lack thereof). Our house has been their house. They really have become part of our family. Dawn has been with us the longest. She started right around Christmas 2006 when Harlie was just three months old. Brandy started in February 2007. And Jennifer came on in the summer of 2007 (after having been one of her main nurses at MCV for two months right after her second heart surgery).

But, when Harlie wakes up after a bad dream, we - her parents - should be the ones to give her comfort. And I want us to be a regular family. At night. Being a regular family during the day - at this time - is impossible.

It's weird to think that after almost three years, we'll be completely on our own at night. Well, except on occasion. Like if we go out of town. Hey - I can dream, can't I? We do have respite care hours that we can use for special occasions.

Of course, should things change in Harlie's status, her nursing hours would change, too. But, that would mean that she's not moving forward. And that wouldn't be good. So, I don't want that.

So... a change is coming. We'll just have to see how it goes.

Can't think of a title for this one...

What a bad week for blogging. I'm so behind on things I've wanted to share.

Well, on to something that happened today. For the first time in a loooong time, I had NO appointments today!!! And it was my rest day in my training for my half marathon. So woo hoo all around! So, I walked Murphy to school, and Brandy and I loaded up Harlie and Cooper for some errands.

We met my friend Jennifer (who also doubles as Harlie's nurse, too) and her daughter, Kyleigh (who is just two weeks younger than Harlie). We went to the mall and were looking around in a children's clothing store. I was looking at some clothes when I overheard Jennifer and Brandy talking. I couldn't help but wonder what in the heck the sales clerk was thinking as she heard the conversation. Picture three women with three children. I suppose it's sometimes hard to tell how we all fit together.

Jennifer: Oh, this would be perfect for Harlie when she sleeps. She gets so hot.

Brandy: Oh, I know when I got her up this morning, her hair was matted to her head she was so sweaty.

Jennifer: And, I didn't give her a bath last night.

Brandy: Yeah, Christy and I talked about it and we didn't think she needed one.

Jennifer: Well, I just wiped her down and changed her trach ties and put her to bed.

Then I picked out some stuff and Jennifer picked out some stuff and put it on the counter to pay. Jennifer had a coupon, so we just bought them together so we would both get the discount and Jennifer paid with her card (we'll settle up later of course).

So after that conversation, we buy clothes on one bill.

To make it even funnier, Jennifer and I had just done the same thing a few days ago. But, I needed to exchange some things. So, I get out the clothes to return and Jennifer pulls out the receipt. The clothes that I was returning had the tags cut off. I told Jennifer (while the clerk was ringing us up) that Brandy didn't realize that I was going to return them and had taken the tags off to wash them and put them away. But luckily I told her about it before she put them in the washer.

So, to imagine being a complete stranger - not knowing our relationships - and hearing those conversations and seeing Jennifer purchase my clothes, too, (plus the receipt from a prior purchase together) just makes me laugh. We're buying clothes together, doing laundry together, one's putting the kid to bed, the other one's getting her up in the morning...

Oh, what a funny family we are.

Tuesday, September 8, 2009

The first day of school

The first day of kindergarten went well. The morning was fine - although Cooper decided to sleep in. Not that I'm complaining, but he really could have chosen a better day for that. So, without my usual 6am wake up, Tom came home from the gym to find the house quiet at 7am. But, Murphy jumped out of bed, and was cooperative and excited about the day. He ate a nutritious breakfast of pancakes with syrup and milk and was ready to go.

On the front porch around 7:30am (he has to be in his seat at 7:50)...

Walking down our street...

For the first week of school we can walk him to his class. But after that we have to say goodbye at the "hugs and kisses zone." Which I think is so funny. But I kinda like that they are catering to our emotional needs. And speaking of emotions... right before Tom took this picture I was getting pretty teary-eyed. But, I pulled myself together and was fine. Really.

I don't know what's up with his face in the above picture. While he looks a little freaked out, he was quite excited.

Signing himself in...

And then we said goodbye and Tom and I walked back home. It really wasn't as hard as I thought it was going to be. But, he was so darn excited and happy and had no problem saying goodbye to us, that he made it easier for me.

At 2:15 I got to pick him up. I LOVE being able to walk to school. I love that we'll get that walking time to talk about his day. And I love to see everyone else walking, too. I guess it makes me feel more a part of the neighborhood.

Anyway, the first thing he said was that he had a "great first day of Kindergarten!" And he told me that he ate all his lunch and his snack. It helps when you pack fruit snacks and Little Debbie cakes. Just kidding. He had a peanut butter and jelly sandwich, grapes, cheese crackers and some little rice cake snacks.

Oh, and he got to go to the library today and he checked out two books. I'm sure that was the highlight of his day. He loves books.

Well, I do still have so much to blog about Harlie. But it is too late now for that. I will find the time this week, I promise.


Monday, September 7, 2009

'twas the night before Kindergarten...

I cannot believe that tomorrow morning we will walk Murphy into his class for his first day of school! We moved into this house three years ago in June. For three years we've been going to the playground at his elementary school telling him that "one day, this will be your school". And now it's here! Three years just zoomed by. Blink. Gone.

I've completed the mounds of paperwork. Taken in the bag of supplies. Pulled out his clothes for tomorrow. Got his haircut. And I've told him to remember his manners about a thousand times. I suppose I'm "ready", as if I have a choice.

But before I go, I thought I would share some recent quotes from Murphy...

"Mommy, Cole and I don't have time to watch movies because we are too busy making our evil plans."

"I want a piece of the bad guy gum." It's Orbitz bubblemint. I have no idea why he calls it "bad guy gum" but whatever. When he had a play date with his friend Zach, I overheard Zach ask Murphy, "Does that gum really turn you into a bad guy?"

"I want to watch a movie with pretty girls in it." Um, scary. I suppose it could be worse. But still!

"I have to go potty. For real."

"Cole's mommy forgot to cut his nails. Which is great because now he can open the bags of food when I'm hungry."

And one of my all-time favorite quotes from earlier in the summer. Said (well, cheered rather) while pulling into the YMCA's parking lot one morning... "Yay! No more sports camp!"

Pictures of the big day tomorrow!

Take care,

Thursday, September 3, 2009

Meet the Teacher

Wow. Today we walked down to the elementary school to meet Murphy's Kindergarten teacher. Here we are in our front yard on our way...

School starts on Tuesday. I'm not exactly nervous. I don't know what I am. I really hope he remembers everything I've tried to teach him. Like his manners. And to wash his hands after he goes to the bathroom (and NOT to touch anything in there!) and before snack and lunch. I hope he plays well with others. I hope he eats the lunch I pack him. And I hope he listens when the teacher is talking. Maybe my hopes are too high? Yeah, probably. Oh boy, I hope he doesn't cry. I KNOW I will. Heck, I get all teary eyed just thinking about it. Kindergarten. A whole new world. For all of us.

Harlie was supposed to start at a Montessori preschool on Tuesday as well. But, the school had some renovations done, and it won't be ready to open until the NEXT Tuesday. Which, while I know my dear friend Kim isn't so happy about it (it's her school), I am pretty glad. Maybe that will make her feel better. I am glad that I don't have to send Murphy to Kindergarten and then rush back home to take Harlie to her first day of preschool. Can you say "emotional mess?" Because I'm sure that's what I would be.

Even though Brandy will be with Harlie the whole time, I'm still nervous about all that sending her to preschool brings. Which reminds me, I had someone suggest that I do a "show and tell" about Harlie to her classmates. (Thank you, Katie) In general, I think people (including kids) are less weird about stuff if they have a better understanding. So, maybe answering their questions right up front (without them even having to ask) will make them more comfortable with her. And I need to talk to Kim about that. Oh, I really gotta get go and get some other things done.

Here's what I'm going to blog about soon:

Harlie's nutrition appointment
Harlie's GI appointment
An update on Harlie's spinal surgery

Well, thanks for reading,

Cooper's First Haircut

Cooper got his first haircut today. It was really overdue. Here are some pics...


(That's Murphy in the seat in the background.)



Well, what do you think?

It is very hard to get a good picture of Cooper. He moves all the time. Really fast. But, we are getting family pictures done at the end of the month with Pictures by Paige and I am SO excited! Cooper has not had one professional photograph yet! So, keep a look out for those in the next month or so.

I have so many things to blog about. We have been very busy this week. But, finding the time to sit and blog has become increasingly difficult. Which is a real shame. Because I always feel better after I blog.

Take care,

Wednesday, September 2, 2009

Our 7th Anniversary

Okay, so I've been a terrible blogger lately.

Monday, the 31st was our 7 year anniversary. Unfortunately, with Tom's surgery and just our life in general - another day of celebration did not get the attention it deserved. I have so many things I want to do. But, those things just don't make it to the top of the list these days. That's when I know that I'm over-committed. Yet I can't seem to take anything off my list. Everything is necessary! Well, anyway... I just wanted to share a comment from someone I truly admire. She posted this on Facebook:

You've defied the statistics as parents of a child with disabilities and you have much to be proud of. Happy Anniversary!

Thanks, Ann! From what I've heard, having a medically fragile child increases the chance of divorce dramatically. Marriage is hard. Now throw in a medically fragile child. So far, we have defied the statistics and I am proud. We'll just keep on truckin'.


Two weeks down, six to go.

Hi, I'm sorry it has been so long since my last post.  I have so much I want to say.  I've started to write this post several time...