Wednesday, December 24, 2008

Christmas Eve...

I can't believe it is Christmas Eve already! For some reason I feel like I should write about something deep - like the meaning of Christmas for me and my family or something like that. But I really don't feel like being too serious right now. I just want to enjoy the moment for what it is. My three wonderful kids are home and appear to be well. I am getting over a very quick cold (miracles really do exist!). Tom has the next two days off from work. And my family is coming over tomorrow. What more could I ask for? Oh, and it's my birthday. Who doesn't love turning a year older once you're over 30?


Since it's been a week since my last update I'll just take a moment to give you a quick one. Last Wednesday, December 17th, Tom's Grandmother (Francis "Fran" Holton) passed away in Pittsburgh, PA. She was 88. She had Alzheimers Disease for the past several years and just a few months ago she fell and broke her hip. Her and her husband (Albert "Al" Holton) had their 60th wedding anniversary this year. Pretty amazing. She was a wonderful woman and I will always remember her Pittsburgh accent. If you've never heard "Pittsburghese" you're really missing out. It is something else! Click here to hear an interview about it. Tom definitely had more of the dialect when I first met him (10 years ago!) but 17 years in the south (including Charleston, SC) finally worked it out of him. Which is kind of a shame.


Anyway, since Harlie was still dealing with extra oxygen, and getting my family in a car at the last minute is virtually impossible, he went to Pittsburgh alone. I wish we could have gone, but I don't think Tom was ready for Murphy to go to his first funeral (that he would remember - he was at my Grandmother's funeral in 2005).


On Friday morning (right before Tom left) we took the kids to see Santa. Murphy actually talked to him, which kind of surprised me. Harlie wanted NOTHING to do with him, which didn't surprise me. Tom put her down in front of Santa and as soon as her feet hit the ground she started walking away - and CLICK! picture taken. Great.



On Saturday, I was very proud of myself. I took all 3 kids to a birthday party for my neighbor's son, Cole. He turned 4. It was at a gymnasium and the kids had a great time running and jumping all over the place. I was a little nervous about taking the kids by myself. And I could have asked my Mom to go with me. But I really wanted to do it. I just felt like it was a hurdle I needed to jump and get behind me. And it went great! Although I must admit that I got lucky. Another one of my neighbors got there at the same time and she took Murphy in and got him settled for me. Then as I was carrying 2 diaper bags, the suction machine, Cooper in his carrier and trying to get Harlie to go up the stairs, Cole's grandfather came out to help me. He took Cooper so I could pick up Harlie. Then he was so great with Harlie. He took her into the gym and helped her on some of the equipment so she could play, while I was feeding Cooper. I'll have to ask Cami (Cole's mom) if she got any pictures of the two of them together because they were so cute! I just can't explain how it makes me feel to see people look past Harlie's differences and see her as the amazing little girl she is. Her smile is so contagious and I feel so much better about her future after watching people play with her.

Then on Sunday I worked at Mountcastle Homes (my job before I had Harlie). I just fill in on occasion when he needs office coverage. It's always a nice break from my life to go back into the office and remember simpler times. Then Tom got home and took Murphy to the club to watch the Steelers. Unfortunately they lost to the Titans. Oh well, at least they made the playoffs, so football season isn't over yet.

Then on Monday Brandy and I took all 3 kids to a Christmas party at my friend Kim's house (her daughter has a heart defect, too). I'll post more about that later, because that is a wonderful story I want to share with too long of a story to write tonight.

Then on Tuesday Murphy went to my Mom's for cookie making day. It was chaos. I mean TRUE chaos. Seriously. I'm not exaggerating. I think my Mom's crazy. Wonderful, too. But crazy. But I guess that's what Nana's are supposed to be. Makes for great stories later. Which my Mom is FAMOUS for. How my older siblings survived their childhood is a constant source of laughter when we're all together.
And now you're all caught up. Wow. This post is a lot longer than I thought it would be. And I forgot to mention the BEST part! Harlie is now officially back to her normal self. No more O2 during the day!!! Woo Hoo!!! I am so much happier now that she is happier and healthier.

Well, I hope you all have a wonderful Christmas. Thank you so much for caring about Harlie and my family. We are so grateful to have you in our lives.


Merry Christmas!
~Christy

Wednesday, December 17, 2008

She's getting better...

I have a few minutes so I thought I would post a real quick update (just in case any of you were worried about her). She is getting better. She's still on a little O2, but it's definitely decreasing now, which is a huge relief for me. Well, I "knew" she'd recover eventually, but I just like it better when she's better (duh!).

We went back to see her pediatrician yesterday and she got her Synagis shots (the ones to help prevent RSV). She gets one in each thigh. Last night she signed "hurt" to me and I asked her, "where, show me where you hurt" and she pointed at her thigh. Pretty cool to have that little "conversation" with her.

Anyway, I asked her doc about the antibiotics she was on. She was on them for 8 or 9 days and she certainly wasn't improving the way she should have been if they were actually working. So, I guess we can safely assume that it was viral. Anyway, the meds gave her diarrhea, which has resulted in the worst diaper rash I have ever seen - and she's had a lot of them! So, he peeked in her ear and of course it is still full of fluid and infected (probably will stay that way until she gets another tube put in) so he changed her meds to something else that will hopefully help her in the GI department. We went from one extreme to the other! I put some baby food back in her formula so maybe we'll be able to balance her out a little.

Well, all three kids are quiet now so I want to try to get something accomplished in the house. Just wanted to let you know things are improving. Thank you for all your support. I always feel bad when I post a crummy post. But I suppose to only post positive posts really isn't being that honest. Things aren't always good around here and I certainly have my down days, that's for sure. But we bounce back and I guess that's what's important.

Thanks again!
~Christy

Sunday, December 14, 2008

She's home.

Sorry it took me so long to update the blog. I usually only like to write when I’m feeling good about things, and to be honest, I’ve had a hard time feeling good the past few days.

She was discharged late afternoon on Thursday. One of the residents said that they weren’t going to discharge her until she was back on room air. I almost freaked. But then Harlie’s doc, that knows us well, said that was silly if I could provide the O2 at home. Whew!

I have to tell you, if I had to stay in that “room” another day I think I would have lost it. I can’t begin to tell you how incredibly small it was. Heaven help the patient that’s in there during an emergency. There is absolutely NO room to move around the crib. The only chair (which is also the bed) has to go in front of the suction control – so that meant that I was the only one that could suction her. I seriously can not express how uncomfortable it was to be squished like that. Every time a doc or nurse had to do something it meant a lot of moving things around and squeezing by one another. It was truly awful. I really can’t believe that they expect someone to be able to stay there for any length of time whatsoever. As if it isn’t hard enough just being in the hospital!

I can’t believe how much harder it is to leave her alone in the hospital. Well, really it isn’t an option. Now that she knows when she needs to be suctioned (she tells us and goes and turns on the suction machine and when we’re done, she turns it off) she understands that she is dependant on someone to help her breathe. How could I possibly leave her alone knowing that she is going to cough and want to be suctioned, knowing that there’s no one there to do it? I have to make her suffer enough, I simply can’t do that to her, too!

Anyway, I really hope that the uncomfortableness of the room didn’t influence my decision to take her home. And I guess it’s not exactly completely up to me anyway. There are doctors that have to feel good about it, too.

As far as what was/is wrong with her, it’s really only a guess. They are thinking that it must be some kind of virus/bronchiolitis. There is no apparent evidence of that – her lungs sound normal, no excessive coughing and the x-rays are fine. But she needs extra O2, which is NOT normal. And her heart looked good on the echo, so it can’t be that. They said that the antibiotics that she’s on now should fight whatever it is and that she will get better in a few days and should be able to come off the O2. But Monday will be day 7 on the antibiotics. I just thought that she should be making more progress coming off the O2 by now.

This “sickness” has been a hard one for me to wrap my mind around. She has been WAY sicker and didn’t need O2. I just don’t understand how she can appear to be fine, but still need the O2. It just doesn’t sit well with me. I guess because watching the pulse ox like a hawk, seeing low numbers and willing them to rise just takes me back to worse times. I just feel like we’ve taken a step back and that’s not the direction I want to go. Not to mention it is a complete pain now that she is mobile. Which, I even feel bad saying because I am so thankful she’s mobile and that she doesn’t require more equipment than she does. But I gave her a VERY quick bath and took her off the O2 for just a few minutes and when I hooked her back up she was in the low 60s!!! Now I know that doesn’t mean much to most of you – but that is LOW. Even for Harlie. The typical person has sats close to 100. Her sats are mostly in the 80s, which is fine for her given her heart defects. I think after her next heart surgery, they should improve. Anyway, so the 60s is crazy. And stressful to see, no matter the explanation.

And all this just knocks me back into a reality I don’t want to deal with. Harlie has been doing so great that I forgot how complicated she truly is (medically I mean). And I just don’t like being reminded of that. A simple cold to one child is something that lands her in the hospital. And this sickness alone meant dealing with several different specialists and it is really hard to put all the information together to come to a conclusion. And the person who really has to do that is… ME!

So, between Cooper being sick and trying to keep him out of the hospital, Harlie being sick and trying to keep her home and this horrible economy which has directly affected my family, we have to dig way down to try to find that Christmas spirit this year. Oh, speaking of Christmas – I didn’t do Christmas cards this year. So, when you don’t receive one from me – don’t be offended!

Well, that’s it for now. Thanks for all your well wishes!

Take care,
Christy

Wednesday, December 10, 2008

Admitted

What a long day! And after a day like today there is nothing better than settling into this uncomfortable pull-out chair in a very cramped "room" separated by curtains, with our neighbor leaving all the bright lights on. Ahhh...

Yes, she was admitted today. Ugh. They ran more tests - urine, repeat blood work, x-rays and an echo (ultrasound of her heart). All came back okay. Her RSV test was negative. So, they don't know the source of the infection. At one point the doc told me she had pneumonia. But then just a few minutes later he came back to tell me the radiologist said it wasn't pneumonia. Her echo looked good, so we know her heart is good. Her white blood count has come down from 33 to 25, so it looks like the infection is responding to the antibiotics.

This hospital stay is a very different experience. The last few we've had have been for surgeries, so she's had sedation meds, etc. She is so much more aware now, and mobile. In the ER they have beds with side rails. So, I could not leave her side. She could easily stand up and fall over the rails. And she had a fit when I tried to leave anyway. She has really had a rough time lately with all the poking and prodding, so she was a handful to say the least. She's definitely a fighter, even when she feels bad. To get the IV in it took 3 people to hold her down. I absolutely hate being one of those people. It kills me to watch her go through that. And it takes forever. When they tried to get a urine sample, they had to try 3 times! It was agony! Finally she just peed in the bed so they scooped up their sample and Harlie finally got to rest a bit.

Of course in the ER there is no cell connection and no phone in the room. So, it was hours before I could call Tom to let him know what was going on. Not being able to leave her for just a second is very inconvenient. Forget about being able to eat or drink or go to the bathroom. But when you're busy torturing your kid, you kind of forget about those things.

And getting the boys set up with care is a whole new issue now. Before Murphy was in school, so all I really needed was someone to take him and pick him up. Now he has to be picked up by 12:30 and Cooper needs care all day. I am very thankful my mom is retired and very willing to help out. So, she came over this morning so I could bring Harlie down here. Now I won't be home until tomorrow (hopefully) and I miss him! This is the longest I've been away from him and I don't think I was ready!

Tomorrow is going to be a challenge. I am supposed to be in family court as a character witness for my night nurse. She is trying to get custody of her granddaughter and with her taking care of my special needs child, they said that I should be very good for their case. I really hope she gets her, so my mom is going to come here to the hospital to relieve me so I can go home, shower, find something "nice" to wear and go to court. I have no idea how long it will take. The lawyer said that I might sit there for hours because she has no idea when I'll be called in. My friend Jennifer is going to come and pick up Cooper in the morning and keep him for us. So, thank you Jennifer! Then I will come back to the hospital and if things go our way, she'll be feeling much better and she'll be ready to go home.

Although, I think if you asked her, she'd let you know that she's ready to go home now. Earlier she took off her pulse ox probe, tried to put on her shirt and pointed to the stroller. For a girl who can't talk she sure can say a lot!

Well, it's 10pm and Harlie finally just fell asleep. I am dreaming of my comfy bed and pjs at home. I hope they will discharge her tomorrow and that she will improve from here on out.

Take care,
Christy

Back to the ER...

Just a quick update to let you know that I am taking Harlie back to the ER. Hopefully we'll get some answers today. She's on a lot of oxygen with still low sats and until I know why, I'm just not comfortable with that. And she definitely feels bad today.

I'm going to take my computer and hopefully the wireless is in the ER so I can update as I can.

Wish us luck!
Thanks,
Christy

Tuesday, December 9, 2008

Another trip to the ER...

Yesterday Harlie woke up and seemed sick. She sat on the couch and didn't move. Then I noticed that her breathing was very labored. We haven't seen her breathe like that in a long time. So, I called her pediatrician and got an appointment. Of course, I had to cancel her ortho appointment to replace it with the ped appointment. But, she wasn't feeling good anyway, so I'm sure it was better to cancel that one. It's just her annual spinal check and I think that can wait till after the holidays. I am trying really hard to not overwhelm our schedule anymore (a true challenge for me).

Anyway, so Brandy and I load up the kids and go see Dr. Derco at 3:30. He does not like her color (her nail beds were blueish) or her labored breathing. Her secretions are thick and frequent (had to get up numerous times the night before to suction her, which rarely happens anymore) and she had a fever of 100.2. Oh, and we've had to turn on the oxygen a lot lately. Her sats have been hanging out in the 70s instead of the 80s like normal. So, he said I had to take her to the ER at MCV. Lovely.

So, I drop Brandy and the boys off at home, call my mom and ask her to come over and I take Harlie to MCV. I was so lucky and found street parking right near the ER (that has NEVER happened). We check in and they said a nurse would come and get her. Oh, when we checked in the nurse at the front desk asked what her sats were and I said 70s and she almost freaked out. She started to run and get some help and I told her it was okay. She's a cardiac kid and she's fine. She said, "Whew"! It was funny.

Anyway, the nurse that came to get us was Stephanie! The same nurse that we had when we spent 50-some hours in the ER a year and a half ago. It was so nice to get there and be welcomed by her. Plus, it helps when the nurse remembers Harlie's history. It was great.

So, they took a couple x-rays, started an IV (torture as usual), took some blood, and nasal swabs for testing.

The quick version (Cooper's starting to stir so I gotta be quick) is that the x-rays were fine for her chest, but she is very backed up in the poo department. UGH! And she's been pooping. No applesauce for Harlie today. And her white cell count was 33 (normal range is 5 to 10), so she's fighting off some bug for sure. Oh, and at 5:30 her temp had gone up to 102.8! We won't know the other results until some time today. They have to wait for something to grow in her cultures.
I was thinking she got RSV since Cooper just had it, but I don't think her white cell count would be so high with that, but who knows. They said that an elevated white cell count usually means a bacterial infection vs. a viral infection. So, they gave her a Rocephin shot (hate those) which is a strong antibiotic med. They wanted to give it through her IV, but it went bad before they could do it and it is worse to get another IV started than to just get one shot and be done with it. Plus, she did get her Synagis shot last month which is supposed to help ward off RSV.

Oh! And the doc that was on was the same one we've had before and she remembered us. And the nurse that relieved Stephanie at 7pm was Angela - a Steeler fan club friend of ours. How great is that?! They all couldn't believe how big Harlie has gotten and they all said that they couldn't get over her hair. It is really coming in thick now (which is a huge relief for me). So, the stars were aligned for us last night as far as care goes.

Anyway, the doc asked me how I felt about Harlie's condition and I said I was fine to take her home and that I knew my night nurse was coming in. So they let me take her home. Angela said that she would have been admitted for sure if she was a normal kid. But I am very comfortable taking care of her when she's sick and we certainly have all the necessary equipment. So, at 9:30pm we left. Another very long day. On my way to the ER I had to wonder when life will settle out and not be so frantic all the time. I just hope I have the energy to keep up.

Oh! And she was supposed to go to Children's in DC this morning to have a tube put in her ear, but clearly we had to cancel that. I didn't feel like driving that today anyway. And they said we had to be there by 6am - which means leaving here before 4am. Yuck! I do feel bad cancelling at the last second though because Dr. Preciado really went out of his way to get her in so fast. We didn't want her to go too long without the tube because she is constantly getting infections. Oh well, such is life I guess.

Well, Cooper needs me now. So I must run. Talk to you later!
~Christy

Saturday, December 6, 2008

My Overwhelming Day...read at your own risk.

So, another busy week has flown by. I knew I would be busy with 3 kids, but geez.

Monday was a pretty miserable day for Harlie. Which made it pretty miserable for me, too. I HATE seeing her miserable. It hurts me. What was the problem you ask?

WARNING: The following may contain graphic language and subject matter. I apologize now if I offend you. But, such is life with toddlers…

The day before Thanksgiving we started giving Harlie some baby food mixed in with her formula to begin making the transition to a blenderized diet (a blended concoction of baby foods and other ingredients to make her diet more typical for her age and development). The recipe was 2 small jars of baby food bananas plus 4 cans of her formula. Mix all together and divide into her 5 feedings per day. Great, right?

Well, it wasn’t great. After a few days, she went a day without pooping. VERY unusual for her. Clearly, her body was adjusting to the bananas. Fine, I thought. I’ll give it another day or so. I mean, how much damage could a couple jars of bananas do anyway?

Um, A LOT! By Monday morning, she was MISERABLE. Couldn’t play or do anything. My friend, Jennifer (Harlie’s PICU nurse from MCV) was working with us that morning. She agreed that Harlie was definitely in some pain. Jennifer went in with lubed gloves to check out the situation (thank God for nurses!) and she found that Harlie’s bowel was impacted with poop.

You might remember that Harlie was born with an anoperineal fistula. Basically, her anus wasn’t located where it was supposed to be. The muscles were in the right place, but the opening was not in the middle of those muscles. So, just a few days after she turned one, she had a surgery to help repair that. I say “help” because we aren’t sure if that one surgery did the trick or not. The surgeon said he might need to do another one later, but we’ll have to see how she does. He also said that it will take longer than normal to potty train her (maybe by age 4) because it will take a while for her brain and the muscles around the opening to coordinate and work together. One thing he said for sure is that she should NOT become constipated. She lacks the ability to push it out and it could prove to be dangerous for her. He said at some point – depending on her diet – she will need to take supplements to help her stay regular.

Sure, I heard that. But I just didn’t realize how truly important it was.

Until now.

So, back to Monday…

Jennifer had to leave around noon. And I have to pick Murphy up from school at 12:30. Harlie had physical therapy at 11:30, speech therapy at 12:30 AND we had our annual meeting with the Services Coordinator of the Early Intervention Program (through Henrico County) at noon. So, I had to go and get Murphy early, since I wouldn’t be able to leave at 12:30. Which meant he would be home during all this chaos, when I needed to be focused on the meeting. The meeting was to see what goals she has met and what new goals we need to set for her for the coming year. The goals have to be VERY specific so it can be determined if they were met or not. For example, brushing her teeth. Do we want her to be able to brush her teeth for a minute, or just be better at it or both? My point here is that I really needed to be able to focus on this. Not an easy task with 3 kids – especially when all 3 need you at the exact same time. Which was the case, of course.

Murphy wanted to make his own peanut butter and jelly sandwich (has disaster written all over it) and I was trying to help Harlie poop, and Cooper was crying. Nice. I thought that if I sat Harlie on the potty it might help her push it out. Keep in mind that I’ve never seen her push – with a liquid diet, pushing isn’t required. So, in order to be a part of the meeting at my kitchen table, I brought the potty out there and sat Harlie on it. What a nice scenario, huh? Oh, and at one point I heard Murphy ask, “Mommy, is this sugar”? No, it wasn’t – it was Thick-It, Harlie’s food thickener powder, which is white and does look like sugar. Thank goodness he asked me before he put a scoop in his mouth. It was truly chaotic and splitting myself into 4 different directions just doesn’t work.

After the meeting and her therapies were over I took a deep breath and tried to regain some order in my house. I think it was 3pm before I realized that the only thing I had eaten all day was a banana – at 6am.

Back to Harlie. After no success all day, I started making some phone calls. Again, tried some other things, no success. We had a very serious situation here and I was getting really worried. Nothing could be given through her g-tube that would help – it was too far down and right near the opening, that nothing given “orally” would do any good. Somehow we had to get it out of there. So, I put on some gloves, lubed up and tried to see what I could do. Murphy asked me what I was doing and I told him that I was trying to help Harlie get the poop out. (Lovely toddler-speak.) He thought for a second and then said, “Well, Mommy, you should tie a string around it and pull it out”. If only…

At one point during the day Harlie was crying those big silent tears and signed “hurt” to me. I just taught her that sign about a week ago and this was the first time she used it completely on her own. Oh, just rip my heart out, will ya?

So, Jennifer suggested we try a milk of molasses enema. It’s something they do in the PICU. She described it to me and I cringed. So, of course, I begged her to come and do it for me. Which, thankfully, she did. She is such a good person and I am lucky to have met her.

At this point, Harlie was running from all diaper changes and the wipes. Poor thing. So we set up for the procedure and we got down to business. It was awful. Holding her down was truly traumatizing. But, thankfully, Jennifer was successful. After it was all over, Harlie was spent. I gave her the quickest bath ever and got her to bed. She was asleep in seconds. And now, she is fine. She’s now on Miralax daily, and we stopped the bananas and replaced it with applesauce. Things are definitely better. But I can’t believe I let that happen. NEVER again! Luckily, I have since learned that we aren’t alone and that this isn’t that unusual. Although it certainly felt like it at the time. So, thanks Donna for making me feel better!

And I suppose we’ll have to take this blenderized diet a little slower. But, can you get slower than 4 ounces of baby food per day? Hopefully it was the bananas. Maybe if we avoid bananas, we can make some progress. Hopefully she’ll be eating a blenderized diet by the time she’s 5.

Take care,
Christy

Monday, December 1, 2008

Boys keep you on your toes.

Today was probably one of the most overwhelming days I've had in a long time. It requires more time and energy than I have right now to tell you about it. So, hopefully I'll get some time tomorrow to write.

For now, I'll just tell you about one of my recent conversations with Murphy. They are always so interesting and sometimes I just am so distracted I don't see where they are headed.

The other night, between giving Harlie water, suctioning, changing diapers, etc. Murphy, holding a cordless phone, says, "Mommy, where's the number 9?" Clueless me, who is on my way to another task, stops suddenly, thinks to myself - he knows what the number 9 looks like - turns around and says, "Oh, right here, sweetheart." As I go back on my way to complete whatever it was I was doing, stepping over toys, children, etc., I barely happen to hear Murphy say, "I'm going to practice calling 911". WHAT?!?!

If I could spell the screeching sound you hear when brakes are applied strongly and suddenly, I would. Because that's what I heard in my head when I could not turn around and run to the phone fast enough. Thankfully, he did not have a dial tone when he dialed 911, but it was there, on the screen, big as life. WHEW! That was a close one.

Little boys. They sure do make life interesting.

Take care,
Christy

Saturday, November 29, 2008

Cooper's RSV update

Last night was better than I expected. We put him in his car seat to sleep and brought him into our room for the night. I was hoping that sitting up would help his drainage. He only woke up twice during the night so I think that might have made a difference. Made me feel better, anyway. We had the oxygen ready to go, but he didn't need it. Around 7am he started coughing and he just could not stop. It was terrible.

Later on in the morning the pediatrician's office called and asked me to bring him in for a follow up visit. He is wheezing and more junky sounding today than yesterday. And she said that he's working a little hard to breathe. But, you really wouldn't know it by looking at him - he looks just fine to me. He's not even fussy. Tired, but not fussy. He's definitely sleeping more and eating less, but all in all, I think he's doing fine. I'm giving him breathing treatments every 4 hours. She said she didn't know if it would help the RSV exactly, but it might help him cough up some stuff, which might make him feel better. Maybe. Worth a try I guess.

The doc told me to periodically check his sats with our pulse ox and if his numbers go below 95 that I have to take him back to the hospital. He's at 96 right now, so we're good!

Well, time for another breathing treatment and hopefully we'll all get some good sleep tonight.

Take care, Christy

Friday, November 28, 2008

Happy Thanksgiving...a little late.

I hope you all had a great Thanksgiving. We had the most quiet Thanksgiving we've EVER had. My parents went to Florida to visit my aunt and uncle for the holiday, my big brother, Bruce, and his family went to Northern Va, my little brother, Cabell, and his girlfriend went to her family's house, and my sister had her in-laws. So, that left us and my aunt that lives here in Richmond. So, it was just the six of us. Although, Harlie played outside that afternoon and by dinnertime she was wiped out and fell fast asleep on the couch (which she NEVER does, well, I guess I can't say never anymore, huh?). Anyway, so with Cooper and Harlie sleeping, it left the four of us at the table. But, Tom made a GREAT spread and we had fun and enjoyed the peace and quiet for a little while.

Unfortunately, Cooper had a terrible night. He coughed all night long. He's been fighting this cold for a while now (like weeks) and it just seemed to get noticeably worse all of a sudden. So, as soon as the peds office opened, I called and made an appointment for him. Although I have to tell you - deciding to take one of my "well" children in to the doctor is not easy for me. My perspective is so different now after all that we've been through with Harlie. I'm afraid that I've become a little desensitized. For example, he asked me how his work of breathing has been - labored? Um, no. I think. His nose isn't flaring, I know that. But I saw how hard Harlie worked to breathe last summer - like respirations over 100 was her NORM! So, what do I know??? Anything seems better than that. But I have to look at his baseline, not hers! Get a grip, Christy!

So, anyway, the ped did not like his cough at all, or the way his lungs sounded. So he checked his sats with their pulse ox and his sats were low 90s, high 80s (which is not good). So, he told me to take him to the ER for chest x-rays, RSV test, and pertussis test. And he told me to not be surprised if he was admitted. WHAT? Admitted? Cooper and not Harlie??? Whoa!

So, off to the ER we go. They took some blood and started an IV (he was such a champ, too, hardly even cried) plus they took a swab for the RSV test. Which came back positive! He has RSV. Luckily, it doesn't seem too terrible right now. And with my oxygen, pulse ox, and nebulizer availability, they let us take him home. There's nothing they can do for RSV, other than monitor him and give him oxygen when needed. And I can do that at home. So the risk of him catching something worse at the hospital is greater than the risk of bringing him home. So, we did. Hopefully we'll keep him here. Oh, and he has another double ear infection to boot (his second in just 2 months)! My poor little guy!!!

On a lighter note.. the other day, Harlie wanted to go outside with Murphy. Here's how it played out:

Gotta get my brother's hat on...





Okay, I'm all set...





Gotta sign "outside" just in case the hat and standing by the door isn't enough...





Here, I'll even open the door for myself...




No??? I can't go???





UGH!






Guess I don't need the stupid hat after all. Mean mommy.



And another day with her refusing to take a nap. Despite sitting in her crib for over 2 hours! Man, is she stubborn!!! So by dinner time this is what happened...










And lastly, I'll leave you with a few recent pics of Cooper. He's my round-faced charmer. He really is a sweet baby.














Take care!
~Christy

Monday, November 24, 2008

Funny Harlie

We had a very busy day today. We had to go and get Harlie measured for her new ankle/foot braces (she's outgrown her current ones). Then we had to rush back home for her physical therapy appointment (which went great). And as soon as that one was over, we had speech therapy (which also went great). Right when speech therapy begins I have to go and pick up Murphy from preschool, and when he gets home its crazy. Especially when Beth is trying to concentrate on Harlie's therapy.

Well, back to Harlie's great speech therapy session. She kept her PMV (speaking valve, which we call her "voice") on the entire time - that's an hour, folks (a long time for her). It helps her swallowing and breathing function, which is why it is so important for her to wear it as often as possible. She tolerates it just fine - physically. She just for some reason, likes to take it off. Her hands are closer and quicker than mine, and it is impossible to keep her from removing it. But, she knows that Beth expects her to wear it for feeding, so she does. Which tells us that we need to expect her to wear it all the time and let her know that. At the end of the session, Harlie waved bye-bye to Beth and blew her a kiss. Then she took off the PMV and signed that she wanted down from her chair. So, we said she couldn't get down unless she put her voice on. She grimaced, and it took a few times going back and forth for her to realize that we were serious. So, she put her voice on, we let her down and she went on in the living room to play.

Somehow she ended up in a chair in the living room and took her voice off. Again, we wouldn't let her down unless she put her voice on - and kept it on. So, I asked her if she wanted down. She nodded yes, and then I told her to put her voice on. She would, and I let her down. As soon as her feet hit the floor, she would take it off. Then I would put her back up on the chair. She'd cry a bit and the whole scenario repeated - about 15 times! At one point I grew tired of the whole ordeal. So, when she got down off the chair and took her voice off, I just looked at her. And she turned around and climbed back up on the chair totally on her own!!! It was hilarious!

She finally gave up and left her voice on so she could play. I guess it pays to be consistent. But oh boy it takes A LOT of energy!

Well, that's all I have time for tonight. Talk to you later!

Thursday, November 20, 2008

Quick one

I only have a minute because I really need to get to bed. Cooper has been trying to sleep through the night lately, which has been wonderful. Last week he slept till 4am two nights in a row and then he slept till 5am two nights, but then went back to waking up at 1am and 5am. So, we'll see how he does tonight.

It's been another busy week (who has slow ones, anyway?) On Tuesday we had an appointment at the pulmonary clinic. Really, I just go so we can see her nutritionist (Anne). And this time we were going to talk about how to transition from formula to a blenderized diet. But, after waiting for more than an hour and a half, we find out that Anne sprained her ankle and wasn't there. Great. But, they weighed and measured her (she weighs 24 pounds and is 33 inches tall) so they were going to give all her measurements to Anne and she's supposed to call me to let me know how we're doing and what the next step is.

One big thing that happened last week is that we got Harlie down to half-hour feedings instead of hour feedings. What a huge change and improvement for us! That equates to 2 hours that Harlie doesn't have to wear her feeding backpack, which is just great. AND the BEST change is that we finally got her OFF her continuous night feed! YAY!!! It has never felt right to me that she ate while she slept. (Or that it took her an hour to eat what a baby can down in minutes.) So, I really feel like we are getting her to a more normal feeding schedule which will hopefully help us when we finally transition to a blenderized diet.

Well, it is getting late and we have an early morning appointment, which is very challenging for the kids. I'm really looking forward to it.

Take care,
Christy

Sunday, November 16, 2008

Suntrust Half Marathon

As you might guess from my absence from my blog, we've had a busy week. You might remember that Murphy got a stomach bug. After a few days, Tom caught it, too. That was real fun. I tried my hardest to keep the bug contained to just the two of them. Murphy got it 10 days ago and Tom got it 7 days ago. As of now, it looks like the two of them are almost back to 100%, so I am hoping I was successful. Notice that I am not willing to chance saying anything for sure as you know how that goes...

The bug really hit Tom at a terrible time. He's been training for his first half marathon (the Suntrust Half Marathon) for a while now and he was sick for the entire week before the race. He lost 5 pounds during the week and barely ate anything. I think Friday night was the most of a meal I had seen him eat since last Saturday. So I was a little worried about him running 13 miles after that. But, he did great. He ran the 13.1 miles in 2 hours and 17 minutes. He ran it with our friend Neal, who did great too. Here are some pics:


I had to crop this one so Tom is closer so it's a little fuzzy. But cool that I could put Tom's name on his shirt!




Tom and Neal right after they finished.



Heather, Griffin, Mallory and Neal.





And here's the best picture!



Being at a race always gets me wanting to run again. I've run in a couple 10ks and I ran the Suntrust 8k years ago (before Murphy). So, I think I'm going to make it my goal to run a half marathon next year. There's a half marathon in Virginia Beach in March, so we'll see...

Well, that's it for tonight.


Take care,
Christy

Tuesday, November 11, 2008

No Mommy, I am NOT tired!

Okay, Murphy. Whatever you say...





He slept standing up like that for about 15-20 minutes. Unfortunately I couldn't stare at him the whole time, so I missed it when he finally fell over and woke up. I suppose a really good mom and dad would have picked him up and layed him comfortably on the couch. Instead, we laughed and took pictures and then enjoyed the peace and quiet.
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Sunday, November 9, 2008

Ever wondered...

what a little girl who doesn't eat by mouth does with her birthday cupcake?












I know, I'm a little late with these photos (her birthday was September 25). But, I've been a little busy lately. Anyway, I have no idea why she shoved her cupcake in the slats of the chair. But she thought it was pretty funny. And she was right. I would give anything to know what goes through her mind sometimes.
Well, hopefully one day, she'll actually be able to eat her birthday cake. But for now, she doesn't know what she's missing and she's perfectly happy.
Take care,
Christy

Friday, November 7, 2008

The dreaded Stomach Bug!

The dreaded Stomach Bug has struck Murphy. Poor little guy! He is not lovin' life right now. Although he is much better today than he was yesterday. At 10am, he didn't have a fever. Early in the afternoon I felt his head and he was on fire. His temp was 103.3! His fever was kicking his butt and he was dizzy and very lethargic. This didn't work well with his bodily functions, which somehow, Tom always gets on him. And Tom is very good about it and never makes a big deal out of it so that Murphy doesn't feel any worse than he already does. We just laugh later. Well, me more than Tom.

So last night was Cooper's best night. He slept soundly from 8:30pm to 2:30am! Woohoo! But, OF COURSE, Murphy woke us up at midnight. And I felt like I was a CSI trying to figure out how "stuff" got in the places we found it. It was smelly and gross, but all quite amusing, really. Well, except for Murphy. I don't think he's been amused at all lately.

Hopefully, tomorrow Murphy will be much improved.

Sunday, November 2, 2008

Happy Halloween

Halloween was fun this year now that Murphy totally gets it. And he got to wear his costume several times for different parties, so he loved that. My neighborhood was crazy - SO many kids! Tom and the guys set up a table out front so they could hang out and give out candy and the girls and I took the kids trick-or-treating. I put Harlie and the suction machine in the wagon. I think she was a little overwhelmed by seeing everyone else. She probably thinks we're all crazy. She was certainly entertained just watching. Here are a few pics.



Harlie, Murphy and Olivia







Cooper

Harlie LOVES her baby brother.

The next morning I was feeding Cooper (Tom was out running) and I realized that Murphy was up and had already gone downstairs. I was surprised that he wasn't calling for Tom - like he normally does. And then I remembered the candy. EEK!!! So, I come downstairs and find him sitting on the couch.
Me: Murphy, are you eating candy?
Him: No Mommy.
Me: Where are the wrappers?
Him: Under the couch.
Gotta love it when they rat themselves out so easily. I hope you all had a nice time!
Take care,
Christy

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Saturday, November 1, 2008

Murphy's Fashion Problems Continue.

So, after Thursday's fashion debacle, I made the time to go through Murphy's dresser and pull out all his old clothes so that only appropriate attire would be available. In doing that, I found a pair of jeans that were given to me by a friend. I wasn't sure if they would fit him - but I put them in the drawer so that I would remember to try them on him later. There was also a pair of old overalls that he used for his costume for Halloween last year (he was Farmer Brown). I don't know why I didn't remove them. I was trying to finish up and I just made a mistake. An error in judgment, if you will.

So, on Friday morning, I was feeding Cooper and Murphy walks in the room with the jeans that were given to me (that I had not tried on him yet). Well, they were WAY too big. I mean, falling down to his knees too big. So, I said to Tom, "Those jeans are too big!" To this, Tom sighed loudly, rolled his eyes and told Murphy to go get another pair of pants from his drawer. And guess what he came back with...the overalls. Now keep in mind that the drawer is full of jeans and khakis that fit. The overalls were on the very bottom.

And I don't mean to offend, but, I do not like overalls on a 4 and a half year old BOY. And yes, the overalls have SNAPS. Oh - and the best part - they were WAY too short. I told Tom as soon as I saw him with the overalls that they were going to be too small... well, you can just imagine his response. I didn't win the battle and Murphy went to school sporting another great look. Yes, we're on the cutting edge of fashion here at the Holton Household.

Take care,
Christy

Thursday, October 30, 2008

Oops...

So, I completely forgot that today was picture day at Murphy's school. And this is how he looked...






Yes, that's bed-head he's sporting and a too small t-shirt. For the record, Tom was completely responsible for this look. Oh, how he cares about the details (like clothes that fit). Probably won't be purchasing those pictures.

Oh, and I found my cat locked on the 3rd floor this morning. Ummm, we're not exactly sure when that happened (Tom thinks it was Tuesday night). Oops. I wondered why she didn't eat yesterday. She's okay now. See, look how happy she is...



Well, goodnight!

Wednesday, October 29, 2008

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

Monday, October 27, 2008

Cooper's 1 month old already!

Today we had Cooper's one month check up with his pediatrician. I really can't believe a whole month has already gone by. He has gotten so big. He weighs 9 pounds, 7 ounces.

I know I shouldn't do this - but I just can't help myself - I keep "comparing" him to Harlie. It took four long months of a lot of incredible hard work to get Harlie to 9 pounds. FOUR MONTHS!!! And Cooper can down four to five ounces in no time. Just a couple of months ago, Harlie was getting four ounces in an hour. At almost two YEARS old, she was getting the same amount of food in one feeding as my one MONTH old!!

And it is so funny how some of the things I do for Harlie I "want" to do for Cooper. For example, when I'm changing his diaper or his clothes, I always gently lift his shirt up so I don't snag his feeding tube (you know, the one he doesn't have)! And every single time I shake my head and think I don't need to do that! And when I'm getting him dressed I always pull his shirt down well past his neck so I don't block his trach (again, the one he doesn't have)!

And a few weeks ago when Cooper had his ear infections, he was all congested. Having the tools handy, we used Harlie's suction machine to suction his nose (works SO much better than the bulb syringe they give you at the hospital). Well, one night Tom and I were up and Tom was holding him and Cooper sounded junky and Tom looked at me and said, "Do you want to suction him?" And in one second a million thoughts went through my head - so many memories of us learning when to suction Harlie and how it was when Harlie was that size. We would look at each other and ask that very question so many times. And it made me feel like Cooper had a trach, too, but I had forgotten or blocked it out or something. It was a terrible feeling. Then I came back to reality - thankfully. Amazing how much can go through your head in one second.

Anyway, Harlie is getting so much more involved in her care lately. She's learned to turn on the air compressor before her nap and bedtime and she does it herself - most of the time without even being asked! She's so funny when she does it, too, because it is at the end of the hall and she keeps her finger pointed out (ready to push the button) the whole time she's walking down the hallway. And when we give her water or her feeding, she lifts her shirt so we can get to her g-tube. And today, Brandy said, "Okay Harlie, it's time for your feeding." And Harlie went and got her feed pump back pack and brought it to her. It was so funny because Brandy was just talking aloud - not expecting Harlie to care one way or another. And she turned around and there Harlie was holding her backpack out for Brandy to take.

And tonight I went to put her in her crib and she started to cry (which she NEVER does). I put her in it anyway (I'm such a mean mom) and she signed "brush teeth." Yep. She wanted to brush her teeth first. Now I had asked Tom earlier if he had already brushed her teeth and he said yes, which is why I didn't. But, considering how upset she got that I didn't brush her teeth has me wondering if he was telling the truth. He's sleeping now (something I should be doing, too) so I can't ask him. Hmm... anyway, she's a funny little girl, that's for sure.

Well, I really need to get some sleep while Cooper is sleeping. And we have an early appointment at St. Mary's for a swallow study for Harlie. Who knows how it's going to go. I'm hoping for good things (who doesn't, right?).

Take care,
Christy

Sunday, October 26, 2008

Amanda & Bradley's wedding

So, last weekend (the 18th), Tom's little sister got married in Pittsburgh. It was a beautiful and fun wedding. Unfortunately, my camera battery died just a few pics into the event. I was very bummed. But here are a few shots that I did get:

Harlie about to shove Cooper's pacifier in his mouth - her favorite activity.






There was lots of laughter at this wedding. It was great!



Murphy was the ring bearer, although I think he refused to carry the rings. Or face the correct way. Or stand in the right place?



Harlie couldn't sit still. HA! who thought I'd ever be writing that?!?! So Brandy had to take a walk with her. Yes, during the ceremony. I'm just thankful that she didn't need to be suctioned during the ceremony!



Amanda and Bradley - now a married couple!



Kristie (Tom's older sister) and Tom.



Murphy and Tom.






Grandma and Murphy.






Has anyone seen the cookie table? I really feel like having a cookie. If I could just find one, teeny, tiny cookie, I would be so happy...




Seriously people! What kind of Western Pennsylvania wedding is this with no cookie table???

OH! There it is! Silly me.


And this was just a FRACTION of the cookies that were there. Before we left town we headed on down to the basement of Tom's mom's house to "shop" the leftovers. I kid you not, there were 30+ large containers FILLED with more cookies. Hundreds? Thousands? Who knows. It was CRAZY! Our to go container was full and we've already eaten them all. What can I say? They were good.

The trip went great, really. The kids were great - very cooperative. Although borrowing the two portable DVD players might have had something to do with that (thanks Dave and Melissa!). I will admit I was a little nervous about traveling just 3 weeks after having Cooper, but it went well. Although the packing the day before was truly overwhelming. Harlie's packing is so daunting that I've made a checklist with all her necessary medical equipment that I have to print out to make sure I don't forget something. Unfortunately, if I forget something of hers we can't just run to the local drugstore for a replacement.

Of course, I did leave Cooper's antibiotic in the fridge at home. So, on the way up there we had to find a CVS that wasn't too far off our route, then call the pediatrician's office to get them to send another prescription to that location. It was very time consuming and made us miss the whole rehearsal of the ceremony. Luckily, Mandy was great about it and said that she would be fine if Murphy didn't cooperate - she wasn't going to force him. That took a lot of stress away for us. He ended up walking down the aisle with Tayne (his cousin) who was a junior bridesmaid. Kristie told me later that he wouldn't let them pin a flower on his jacket and he wanted to carry flowers - like Tayne. Nice. So Kristie went and pulled some flowers out of a vase in the bathroom or something so he could carry some. That was a lot nicer than what I would have done. But, I suppose you pick your battles!

Anyway, we did make it to the rehearsal dinner. We left Brandy and Harlie at Tom's mom's house because Harlie was sick. The day before, we took her to the doctor and she has yet another ear infection. Her second one since September. Anyway, so Cal drove us (Tom, me, Murphy and Cooper) to the restaurant. As we were getting out of the car, Tom took Cooper and said to me, "Do you have the suction machine?" (A question that one of us asks another every single time we go somewhere with Harlie). At first I thought he was joking (since the suction machine stays with Harlie and she wasn't there). But he wasn't. Just habit I suppose. It was pretty funny, though.

Anyway, the wedding was great. Lots of laughter. And the reception was a lot of fun. Murphy had a blast running around with Tayne. Boy am I thankful for her and her incredible patience with my 4 year old!

While there I got to see a lot of people who read this blog and care about Harlie. It was great to see some people again, and to meet some for the first time. I met a nice woman, Mary, whose daughter, Anna, wrote a story about Harlie for her 9th grade English project. She gave Tom's mom a copy of it to give to me. It is SO cute! It is called "Harlie Saves The Day." The students had to pick a disability and write a story (and illustrate it) about someone with that disability. She chose Goldenhar Syndrome. I am constantly amazed at how so many people keep Harlie in their thoughts. I hope she got a good grade.

Well, I really need to get Harlie up from her late nap. So I have to go. I hope all is well!
Take care,
Christy

Friday, October 24, 2008

My Labor & Delivery Nurse

So, my mom is here and all the kids are in bed, so I thought I would take the opportunity to write a quick post. One thing I've been wanting to tell you about is the nurse that was with us during my labor with Cooper. I checked in at 11pm and the nurse that was on for the night shift was not great. But at 7am, when the next nurse took over, I was very glad. She was great. As soon as I told her that I was nauseous, she went and got me meds. (Now I have no idea why the night nurse didn't tell me that I could have meds for that considering that is why I got NO sleep the entire night. Some sleep definitely would have helped with the whole labor thing.)

Anyway, as she was getting me all squared away, I noticed her left ear. I could definitely tell that it had been reconstructed. So, I said, "Do you mind if I ask you what happened to your ear"? She said, "No, not at all", and proceeded to tell me that she was born without her left ear. Huh. Crazy.

So I told her that my daughter was born without her left ear, too. We had my laptop there, so Tom pulled up a picture of Harlie's ear and showed it to her. She said that is exactly what her ear looked like, too. So, we had a long conversation about it. She was wearing her hair up and said that she didn't care anymore. She said that she had many surgeries (more than 10!) to give her an ear canal and ear but ear reconstruction is very difficult. It is almost impossible to get the ear to sit off the head. It ends up being really flat against your head. And the ear canal didn't really work, either. Granted, she had her surgeries almost 20 years ago. But, still, I know that the results haven't improved much. Which is why we're going to start with a prosthetic ear and wait until Harlie gets older and has her own opinion about what she wants to do.

Anyway, it was comforting to hear how she feels about herself and that she doesn't let her ear (or lack thereof) bother her at all. I just loved how she wore her hair up. I am really hoping that Harlie will be the same way - about all of the things that make her, well, her.

Thursday, October 23, 2008

Cooper's appointment

Well, today we had Cooper's urology appointment for his circumcision. After what we experienced with Murphy, we wanted to make sure this one was done right. When I called them a few weeks ago, I thought they would think I was crazy for taking him to a urologist for this. But, as it turns out, we aren't the only ones who have had a bad experience with the OB performing the job. In fact, they had 4 on the schedule today alone. Who knew? I guess the theory is that OBs don't see how their work looks later on. They do it, and never see the baby again. We did talk to my OB about it before Cooper was discharged. I told her about Murphy (she didn't do his - she was on vacation). She said she felt like she could do a good job, but didn't want to chance it. She said she would rather me blame the specialist than her.

Anyway, I loved the surgeon. It was Dr. Winslow with Children's Urology. He was great, funny and very caring. They put this numbing cream on it for an hour before the procedure. Then he gave him some numbing shots (he said the needle was like a mosquito bite - so as painless as possible). Cooper barely cried during the shots. As far as the actual procedure goes, Cooper didn't cry at all. They put some sugar water next to him for me to dip his pacifier in. Dr. Winslow said that he would focus on the sugar water more than what was happening to his stuff. Seemed to work, because Cooper didn't look at all bothered.

Then after it was all done, Dr. Winslow picked Cooper up, held him and talked to him. It was really cute. There aren't that many docs out there that do that. So far, I have to say that I feel very lucky to have the great doctors that we have for our kids.

So, we go back in two weeks for a follow up. And that's that. Really, a good experience for me and for him (well, as good as it could be I suppose).

Well, that's all I have time for tonight. I really do have so much more to write about. Hopefully, I'll find some time soon.

Take care,
Christy

Tuesday, October 21, 2008

Poor Harlie...

Okay, so I had to take another long break. I really can't wait till I have more of a handle on my new life and get settled into a routine. Today was the first day I was able to take Murphy to school since Cooper was born. The mornings are definitely the most difficult. But this morning Tom fed Cooper sometime between 4 and 5am, which allowed me to get a few hours of uninterrupted sleep. So I was actually able to get out of bed earlier and get started on my day with a little more energy than usual.

So, today Harlie hurt herself yet again. I don't know why she hurts herself so much. I suppose she's just not as stable as a normal 2-year old. She's still a little unsteady on her feet and trying to figure out how to move - whereas a normal kid does all that a little sooner. Back at the beginning of August she fell in the tub and scraped her chin (and yes, I was standing RIGHT there!). Doesn't sound like a big deal does it? But she bled from somewhere inside her mouth (her jaw was wired shut at the time) and she cried for an unusually long time. As it turns out, she most likely loosened the wires in her jaw - ouch!

The other day she fell again in the tub and made her nose bleed. Again, I was standing RIGHT there with the towel, reaching for her, when she fell. Ugh.

Then a few days ago, she was on the steps (and I was standing right behind her) when she slipped and hit her face on the gate. Even though I was watching her, I still don't understand how she bruised her cheek. And yesterday she scraped her other cheek.

And today was the kicker. She was climbing up the stairs at the end of our bed (something she has done without any problem hundreds of times) and slipped and fell off and completely busted her bottom lip. I am assuming she bit it with her upper teeth. It is ugly. Well, here, see for yourself... Here's Harlie on a bad day...


It amazes me how quickly Harlie recovers from something. She didn't really cry that long after the accident and never complained after that. I know it has to hurt. But she doesn't show it.
Well, I am having a very difficult time keeping my eyes open so I better go. I have more to write about (Tom's sister got married on Saturday) but I can't write anymore tonight. I hope you are all well!
Take care,
Christy

Sunday, October 12, 2008

One of my favorite pics

Here is one of my favorite pics of Harlie.




It was taken the night before her 2nd birthday. I love it because it is such a toddler photo. Harlie's just being silly, like a little kid should be. Brandy made that face to her to try to get her to stick out her tongue. And now she does it right back (although she doesn't stick out her tongue). But maybe she will one day. Crazier things have happened...

Here are a couple more from that night. She looks like such a big girl!











Take care,
Christy

Heart Update

Hi. Here's another thing that's been on my mind - Harlie's heart. l think I'm just going to think out loud and hopefully it&...