Appointment with the surgeon...

...eh, not what I hoped for.

She wanted Harlie to wear the brace for another month.  But we compromised with two weeks.  That way she will have it off for school.  I told her that she doesn't complain - it's me that hates it.  And I recognize that the long-term goals of healing are more important than the pain of dealing with the brace, so if she really wanted us to keep it on, I would.  But, she said that two weeks will be fine.  That way when she goes potty at school, she'll be able to do it on her own.  It is hard to get her shorts up and down with the brace because it goes past her hips.

So, I'm thinking her surgeon would not have approved of this activity...

Notice Cooper posing.  What a ham!

Weeee!

And of course, some video...

How could I deny her this fun?  There is only so much activity I can make her miss.

Anyway, when she gets home after school, we need to put the brace back on her for the rest of the day.  And over time we can wean her off the brace by waiting longer and longer to put it back on her.  She said that it can actually be more of a discomfort to stop wearing the brace cold turkey because all those muscles haven't had to work much over the last five plus months.

I asked if she could resume normal activity once the brace comes off.  I had my hopes up for a gymnastics birthday party for her since she loved it so much and hasn't been able to go since the surgery.    But she said no.  No gymnastics until she sees her next and she will decide then.

So, the next time we see her?  MARCH 2012!!!!  I am SO bummed!!!  She loved gymnastics!

On a positive note, the surgeon said that her x-rays looked "beautiful."  On the side view one, she is much straighter than she was.  She said that she could start to curve forward over time - but she hopes that doesn't happen.  Of course.

Harlie is so cute getting x-rays.  She stands there and does everything the x-ray tech asks her to do.  And he was hilarious because he said, "okay, move your little foot back some.  Exactly." and then "bring your little feet together.  Exactly".  He was cracking me up.

Oh, and she can only carry a light backpack.  Which, I already knew, really.  But it just goes to show you how long this recovery is taking and how many things are affected.  Spinal fusion surgery is no joke.  I think I would have to say it has been the worst surgery so far.  And I sure hope we don't have to do it again.

On the way home there was an earthquake that measured 5.9.  The epicenter was in Mineral, VA, 25 miles from our home.  According to FB, it was felt from North Carolina to Canada.  We were in the car not that far from home, and we felt nothing.  I guess when you're moving 70 miles an hour in a car, you don't notice the ground shaking.  So, I apparently missed the biggest news story of the day.  Oh well.

Oh, and would you believe our luck?  We decided just a few days ago to try and take the kids to the beach - together - all of us - as a family.  Harlie has never been.  Tom took Monday off.  And after I run the Patrick Henry Half Marathon this Saturday, we were going to go to Virginia Beach to stay with some friends who we haven't seen in a long time.  We were going to go to the beach on Sunday and take a baby pool and umbrella for Harlie (since she cannot go into the water - other than just her feet, of course) and we were going to have so much fun!

And now Hurricane Irene is totally screwing up our plans.  The only FUN plans we had for the entire summer.  I am so, so disappointed!!!!  And I don't think we can squeeze it in after the storm passes.  A whole summer and the kids have done nothing exciting.  The boys and Tom went camping and boating a few weekends ago - but Harlie had to stay home with me.  I am so mad at myself for not making more of an effort earlier in the summer.  But it was SO busy!!!  Well, I am not giving up hope yet - but according to reports, it is not likely to happen.

Oh!  And my nephew, Charlie, is playing in the Babe Ruth Little League 13-year old World Series Tournament in NY.  Well, tonight his team won and Charlie got MVP!!!  He hit the winning run.  So now they play again tomorrow night.  What a great experience for him!  Congratulations, Charlie!!!

Okay, that's it for today.  More later!
Thanks,
~Christy

Recovering

Another successful surgery over.  Hopefully that one will be the last for a little while, at least.

Her surgeon said that the wound looked clean - they washed it one last time and moved some muscle around, loosened up her skin (so there wouldn't be so much tension) and closed her up with stitches.  Unfortunately, she couldn't use dissolvable stitches this time, so her scar just got uglier.  But, since it's on her back she won't have to see it, so that's good.

She's now wearing her brace and it is so much better than the cast.  Much more low-profile, which is a very welcome change!

I hope she finds it comfortable because she's going to be wearing it a while.  Like a bare minimum of THREE months!  For 23 hours per day!  Ugh.

Here's how it opens up...

I tried to get a picture of the dressing, but she was not being cooperative.  But you still might be able to see how long it looks.

This is what she looked like when she came out of the OR...

Totally hiding from the world.  Can't say I blame her, either.  This stay's going to be a hard one to get over.  Too much in too short of a time span.  If the girl wanted anything I'd get it for her.  Maybe it's a good thing she doesn't ever ask for anything.

It kinda cracks me up how they cut a gown for her g-tube.  I don't know why.  Every single onesie she's had in her life had a hole in it.  Guess we'll have to go back to holes in her shirts for a while.  I'll just get some plain, inexpensive tank tops to go under the brace.

Taking her back down to the OR this morning was not easy.  She is tired of all this and her pleading eyes told me so.  I wish so much that I could save her - rescue her from one of these situations one day.  Instead I just stand there and watch them take her.  I signed I love you and she looked away and didn't sign it back.  Oh, how that hurt!  But, afterwards, in recovery, I signed it again, and she signed it back.  She lives a complicated life with complicated feelings.  It's no wonder she doesn't act like a normal 4-year old little girl.

She is now on pain meds.  On a schedule today, and then as needed starting tomorrow.  And I asked for something to help her anxiety.  So they put her on Ativan.  I don't know why I didn't think of it sooner.  After her spinal fusion surgery they automatically put her on Valium.

Oh - and her surgeon wants to do a dressing change on Wednesday - then we can take her home.  I'm glad to finally be able to think about it - but disappointed we have to wait till Wednesday.  I really wanted to be home for Murphy's birthday.  But my social worker is going to work to get everything done ahead of time, so that when the surgeon does the dressing change, we'll be ready to go.

Then we see her surgeon again in two weeks.  And I'm sure a bunch after that.

Well, that's it for now.  Thanks for all your love and support!
~Christy

Waiting for Monday.

We moved today.  We are officially in the Heart and Kidney Unit (HKU) vs. the CICU.  We had one of our favorite nurses today in the CICU and our nurses on the HKU seem to be really good, too.  We still have a private bath and shower so I'm pretty comfy, all things considered.

Last night was our best night yet (no beeping!).  We both slept really well.  Our night nurse said that neither one of us moved all night.  And he tried his best to do as little to Harlie as possible.  He said that she kicked the blanket off her during the night, so he could see all of her IVs without having to wake her, which is great.  She normally doesn't like blankets on her - but she is using it as a shield to protect herself and hide.

Since I got a good night's rest for once (and had a nurse that I know is great), I went for a run outside.  Wow - did that feel great! The weather was perfect - a little chilly at first, but perfect once you got warmed up.  And the sun was shining.  Ah, what a little fresh air will do for your spirits!

So, Harlie is very scared and untrusting this stay.  The second anyone walks in the door, she looks at them and says no while signing no AND shaking her head no.  She is using all she's got to get her point across.  No matter what the question - the answer is NO.

Everyone wants to say "I'm just looking" and have her stop fighting and start cooperating.  But, every time she's ever heard that, it has been followed up with a stick.  It's always struck me as odd that they would say "just looking" as they are trying to find a vein to stick.  I mean, I get that they are, in fact, looking - but she's well aware that looking means sticking eventually.

When we moved to another room earlier, they put her in a different bed first.  She saw the other bed and started crying.  For all she knew she was headed back to the OR.  I told her (and signed) that we were moving to a new room but that didn't appear to bring her much comfort.  She just doesn't trust anyone - including me.  I've had to hold her down many times too many. :-(

She's not up for playing or coloring yet.  Maybe I'll work on that tomorrow.  And I requested speech therapy while we're here.  It's the first time I've done that.  The reason I did it is because when we went to lunch yesterday, there was a table set up displaying hearing aids and a communication device (just like Harlie's).  So, in passing I said, "My daughter has that exact one" and then we started talking.  It was a speech therapist.  Huh.

I don't know why I've never thought of that before.  We walked away and I started to think that maybe it would be good for an ST to come and show her some things on her device - medically related, or hospital related.  Maybe things she could say to a nurse?  And maybe it would be good for someone to come and play with her - that's not me.  She loves her therapists at home - all three of them.

So, an ST came up earlier, but she didn't know that device - so she's going to send the same girl I spoke to at the table yesterday to come up tomorrow.  It would be so good to see her play a little.

Three more days of just hanging out.  Waiting.  Hopefully it will stay like that - with no more unexpected trips to the OR.

The surgeon's PA (physician's assistant) came by to see Harlie today.  She said that if everything goes well on Monday and the wound looks good and she can close it as planned, we should be able to go home Tuesday or Wednesday.  She will go home in the brace and she'll have to wear it through summer most likely.  She'll have to wear it all the time - only removing it to bathe.  She said that we are going to have to be really tough about it.  It is so important to limit her movement while the bone is trying to fuse together.

So, I'm guessing that means no gymnastics?  Darn it all.

Well, that's it for now.  I'm going to try to use the next few days to get caught up with some blog posts I've been meaning to write.

Thank you so much for reading and caring!!!
~Christy

Harlie's Haircut

On Wednesday night, Harlie got a haircut.  Her last haircut was in January, I think.  And boy was she due for one!

She was really good for most of it.

Harlie has a TON of hair.  It is thick and plentiful.  And it is beautiful.  Just what I prayed for when she was a little baby.  I remember specifically saying, "God, you owe her some good hair!" 

Ta-Da!  It looks so much better and healthier now.  

Although I would by lying if I said I wasn't a little sad to see her curls go.  She's had those curls for a long time and we're going to miss them.

Here's her new shoes we got her on Tuesday.  Her old shoes wouldn't fit over the new braces she got a month ago (see the swirly braces?).  These are Keds and work great because they are really boxy in shape and so they go right over the braces with no struggle.  That's a welcome change!  And they're cute, too!

Doesn't she look like such a big girl???

Ahhh...and there's that smile we were missing so much!  She is back to being happy and we are all loving it!  Including her.  

Thanks!
~Christy

Baby and Therapies

Hi everyone. Things are still going here - no baby yet. Can't believe it. Never thought I would go this long, really. But not really surprised that I will get to experience the whole spectrum of different pregnancies. One 5 weeks early and water broke, one I was afraid for the pregnancy to end knowing she was safer in the womb than in the world, and this one - the never-ending, completely normal, uneventful, I'll be pregnant forever one. They do say that every pregnancy is different...

I saw my OB doc yesterday and she wants to induce me on Sunday if I don't go before then. I really didn't want it to come to that, but I want to do what's best for the baby and the thought that we could finally meet the little one in just 5 days makes me happy. Plus, with our nursing situation, planning has HUGE advantages. We are going to pretty much need 24-hour nursing care (for Harlie, I mean) while I'm in the hospital and I only get so much per week. But, now that I'm thinking about it, I do have some respite care that I haven't used yet, so that will be fine. It's just that each nurse can only work so many hours. Brandy would definitely do more than 40 hours in a week, but they won't allow it. And one of my other nurses (Dawn) works during the day elsewhere, and the third (my friend, Jennifer) has 2 kids and their schedules to worry about. So, planning really would be very helpful for us all.

Well, Harlie is doing great with her walking. I can't believe how much it has changed her! She is so much more confident in everything else. She is really starting to behave like a typical toddler! You know, she wants up, then she wants down, etc. Whereas she used to be completely content being held forever. She walks every chance she gets now and when she falls, she doesn't cry (that used to set us back days and weeks!) she just gets right back up and keeps going. It has been so amazing and wonderful to watch.

We had physical therapy yesterday and Traci is working on getting her feet closer together when she walks. Right now her base is still far apart and she walks with her hands up high in a protective way. Traci said that in time her hands will come down and within a few months her hands will be swinging by her sides. Brings a smile to my face. Anyway, Traci had Harlie walk on a board that was about 6 inches wide or so to try to get her legs and feet to stay closer together. She did pretty well with assistance. But on her own she just put one foot on the board and the other off, which is still good for her balance practice. The cool thing is how cooperative she was to do it over and over again. She thought it was pretty funny.

We also talked about her foot braces. She definitely walks better with her braces on, versus off. So, we are going to have her continue to wear them all the time (when she's awake, I mean) through the winter and spring and re-evaluate how she's doing at the beginning of summer. Traci said that it's not just a strength issue, it has something to do with ligaments and we just aren't sure what they are going to do at this point. Hopefully wearing them another 8 months or so will get things good enough that she could sport some sandals in the summer on occasion with no braces. She has grown a lot this summer and she got the braces that she has now back in May so it looks like she'll be needing a new set pretty soon.

We also had speech therapy. That was a little more challenging. Beth tried to get a baseline of how her mouth and face are now as far as stretching and mobility goes. That way she can see exactly what we need to work on. There are some facial/mouth reflexes that we have that can be measured - and, well, Harlie didn't have some of those reflexes. But, that just tells her what we need to work on. And the good thing is that we will be able to really tell what our progress is down the road. And that's always good.

But, Harlie wasn't too happy about all the face work. I need to call Dr. Magee's office today. There is a bone in the right side of her jaw that is really sharp and I have a feeling that it will start to come through her skin soon. We found it a while ago and now her skin is bruised and it definitely feels sharper than it did before. When I talked to his office about it after we found it she asked me if it had come through yet and I said no. She said that he won't do anything unless it comes through. I guess he shaves it smooth. ugh. But we see him October 14th for our follow up so we'll see what he says then.

Anyway, my point is that I think the facial exercises, which makes her skin move around, hurts her because of the sharp bone. So, I guess I will continue to do what she allows me to and not force the ones that she really doesn't like at this point (which are the exercises that stretch the bottom of her face).

Well, I've written enough for right now. And I'm hungry. Again.

Take care,
Christy

Update

Sorry for the long absence. I guess I just needed to take a “break”. Truthfully, I have been so busy that by the time the kids are in bed, I am way too tired to write. I calmed down after my rant. For the most part, everything’s been fine and I’ve been happy.

Although today I almost had a meltdown. Brandy was off today and it just seemed that every task took an incredible amount of time and effort to complete. I can’t tell you how many times I start a task (like unloading the dishwasher) and I have to stop and walk into the living room to help Harlie do something (like breathe). Then I walk back into the kitchen to finish unloading the dishwasher when I hear her throw up. Then I have to stop what I’m doing, and go clean it up. This repeats for several hours. Then we ran some errands, had an appointment and I got her home at 2:30 (well past her nap time - see, the appointments are rarely convenient). I took her upstairs and got her settled for her nap. Then I came downstairs to fix my lunch (yes, lunch at 2:30, I was starving and had not eaten since breakfast). I got out the food and Harlie needed me, again. So, I go back upstairs, fix the problem, then come back downstairs to finish making my lunch. Then her pulse ox alarm blares non-stop. So, I have to stop what I’m doing (try not to faint from hunger) and go back up, again, to put the probe back on her toe. The next time it was to stop her feeding. I went up those stairs 4 times in 10 minutes. Didn’t actually sit down to eat until 3:00. I am not a happy camper when I’m hungry, that’s for sure. Luckily she slept soundly, so I got to take a breather myself.

I am slightly nervous about Harlie’s secretions. They are very thick. I think that’s a bad sign. But, she’s been acting fine. Although last night I did have to turn on the oxygen concentrator. But, I am thinking it was because she was so tired. She walked a lot yesterday and then my parents came over for dinner, so she went to bed a little late. She hasn’t had any fevers and her nose isn’t running, so I really think she’s fine overall. We still have one full week before her surgery, so I will just have to be very careful with her.

Well, late last week we went and got Harlie’s foot braces. I will post a photo soon. They are cute. But you usually can’t tell she’s wearing them. They only go to her ankle and since she has to wear socks underneath the braces, the socks usually cover them. The braces look like plastic boots with no toe. They go around her foot and socks and they have velcro to strap them on and they have to be pulled VERY tight. Then the shoes go over the braces. Some special shoes came with the braces. They are made really wide and tall, so they go over the braces easily. I think they are hideous. To see her little toothpick legs go in those HUGE shoes looks really funny. Functionally, they are fine except when she is playing on the floor. Then the big, gigantic-ness of the shoes get in her way.

Traci, Harlie’s PT will oversee the use of the foot braces. She took her Keds and actually got them over the braces, which I was VERY happy about. That worked for two days. Then they started to hurt her feet. Since then, I have put the huge shoes on her. Hopefully I will be able to get her out soon to see if we can find another pair of shoes that will work. Plus, I think canvas shoes would be cooler in the hot summer. So, wish us luck.

I do think the braces are helping. She definitely walks more straight and doesn’t pronate at all (walks on the inside of her feet), which is great. I think we can expect for her to wear them through the summer and winter and we’ll see how she is after that.

Oh, and some good news. Traci suggested that we go down to one PT session per week, instead of two. She said that Harlie is doing great and at this time, she doesn’t think she needs the intensity of two sessions. Plus, it will give us more time during the summer, which I think is a wonderful thing!!! She is going to give me some specific tasks to work on each week, so I can stay focused on her activities. So, I’m happy about that.

Tom had some “guy” time this past weekend, going to the race on Friday night and a baseball game in DC on Saturday. He was thrilled with the race because a friend of ours got them tickets to the Toyota booth and he said that was really cool. But, that left me here with the kids and they kept me plenty busy. I actually found some time to clean (just in case you’re interested, Tara). I find that if I keep on it, it doesn’t get too much for me to do. It just feels like I do it all the time.

Well, tomorrow Murphy’s school is having breakfast for us moms for Mother’s Day, which I think is really cute. So, I’ll have breakfast with him in his class. That should be really interesting. Then I have an OB appointment (just my monthly checkup). Then on Friday Tom and I have an appointment to see Harlie’s cardiologist to get a fetal echocardiogram (ultrasound on the baby’s heart) on Baby #3. I am looking forward to a good report there. I will be 20 weeks along then, and hopefully he’ll be able to get some good views and hopefully everything will be as it should be. I am really starting to feel him/her move a lot now, which is great.

Well, that's about it for now. Thanks for all your comments and support after my rant. I really appreciate it!

Take care,
Christy