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!

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

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

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

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.

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

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

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

Quick Update

It's hard to believe that Cooper is already two weeks old. Boy, have they flown by. Friday was my first day alone, with all three kids, and no nurse. It was supposed to be a fairly easy day with just follow-up appointments with the pediatrician for both Cooper and Harlie. But, on Thursday Brandy told me that I was running out of Harlie's food (which has to be specially ordered). So, after making a few frantic phone calls I managed to find someone at MCV who could get me a case, but I would need to pick it up on Friday. And since I had run out (we have increased Harlie's intake, so she went through her supply faster than normal) I had to go and get the new order placed with the new monthly amount. So, add picking up Murphy at 12:30 - and my day went from okay to CRAZY.

So, I took Harlie and Cooper to their doctor's appointment, then came home, fed Cooper, then went to place my new monthly order (which ended up being more complicated than anticipated). I had my mom pick up Murphy (which was good, because she beat me home). And then my wonderful neighbor took Murphy with her for the afternoon with her kids. Then my mom went to MCV to pick up the formula for me, so I could get the kids fed and down for their naps. So, it was crazy, and I wasn't alone after all. But at some point I am going to have to be able to handle it. I know it will get easier when Cooper is more on a schedule. And when I have a little more energy.

As far as the doctor appointment went, Cooper finally gained some weight back. He weighed 8 pounds even. So, that was a gain of 6 ounces in 4 days, which is great! He is now an eating machine - although he is the slowest eater EVER. Not exactly convenient for my life, but what are going to do??? I'm happy he can eat by mouth - I guess I shouldn't get picky!

The bad thing is that he already has a double ear infection! Ugh! So, here's a recent pic of Cooper.

Then on Friday night our friends Matt and Melissa came up from Suffolk with their two kids. On Saturday, Tom and Matt took the oldest kids (Murphy and Abby) camping for the night. And Melissa and I hung out with Harlie, Cooper and Isabella. They had a good time.

Next week will be very busy. On Tuesday we have a follow-up appointment with Dr. Magee (Harlie's plastic surgeon) in Norfolk. On Wednesday Cooper has an appointment with a urologist (for his circumcision - after Murphy's experience, we aren't taking any chances). And on Friday, we are going to Pittsburgh for Tom's sister's wedding.

Well, that's about it for now.

Take care,
Christy

I'm back...

Wow. That's the longest I think I've ever gone without writing in my blog. A whole week. Well, it's been a busy week. Lots of learning and adjusting going on.

Last Monday (the day after we brought Cooper home) Harlie had her 2-year well check up with her pediatrician. It was her 120th doctor's appointment (not counting her 5+ months in the hospital, of course). Not that I'm counting... Anyway, it was the first appointment that I had to miss. Tom and Brandy took her and I stayed home with Cooper. Unfortunately, Dr. Derco said she had an ear infection. It was only a few weeks ago that her ENT had to remove her old ear tube because it was not in the right place. At the time, he could not put a new one in because he had to remove a granuloma that had grown in her ear canal and that had to heal before putting a new tube in. Unfortunately, she doesn't have a local ENT here in Richmond. And the thought of taking her to DC to get another tube doesn't sound very pleasant. So, it looks like I might need to find an ENT here for something that routine. I just can't see spending all day in DC for a tube!

Harlie is doing great with her walking. She walks everywhere now. She is doing great with Cooper, too. No issues with him at all so far. She has really surprised everyone with how well she is adjusting to him being home. When he cries she goes over to him and wants to give him a pacifier (although he doesn't really want one) and she signs "baby" and "crying" and rubs his head gently. The other day she wanted to hold him so we put her on the couch and I put him on her lap and she leaned over and gave him a kiss on his forehead. It was so darn cute! Murphy is the same way - always wanting to hold him and kiss him.

Cooper is doing well. The only "problem" we have is that he is not gaining weight like we would like. He weighed 8.3 when he was born, and 7.12 when we left the hospital last Sunday. On Wednesday he weighed 7.9 and today (5 days later) he only weighed 7.10. The rule of thumb is that he should be gaining about a half an ounce per day. And one ounce in 5 days isn't cutting it. I don't know what is up with my kids, but they have all struggled with weight gain. It is very frustrating when I try to do everything right and they still don't gain. Dr. Derco wants to see him again on Friday, so we'll see what happens.

Well, speaking of Cooper, he is waking up and is probably pretty hungry. I'll have to post some pictures of him soon. He is pretty cute if I do say so myself.

Take care,
Christy