Monday, May 31, 2010

She drank from a straw!

I have a lot to blog about, but I thought I would post something pretty exciting first. A video of Harlie drinking from a straw - for the first time EVER!!!

For those of you that don't know... Harlie never learned to suck and swallow. She has been tube fed from birth and has only been able to swallow for a little over a year. We've been working on trying to teach her how to suck, but it didn't seem to be working. It's so weird to try to teach something that most everyone just does naturally, without ever really having to learn it.

Our feeding therapist gave me a valve that you put in the drink-end of a straw. It allows the liquid to go up the straw, but doesn't let it come back out again. So, if you do suck a little of the liquid up, but don't have enough power to get it all the way up in one suck, you don't have to start all the way over again. But, even with that valve, it wasn't working.

In the past few weeks we've been at cookouts or other gatherings where the kids are drinking from juice boxes/pouches. And Harlie would grab one, and pretend to drink from it. Or try, even. But I think the straw is just too tiny for her to get good closure around it. And she has been watching Cooper drink from a straw. I have a big water pitcher and he likes to drink from it. Well, tonight, she watched him drink from it and then she wanted a turn. So, I gave it to her, not ever expecting her to actually get any. And it's a long straw, too. But, it's a big one, so maybe that helps with her lip closure or something. Anyway, she sucked water up the first try and swallowed it. So, I grabbed a smaller version of the straw, and some milk, and she loved it!

Oh, pay attention to the sound that you hear at the very beginning of the clip. That is a sound that she makes with her throat all the time. It is so weird.



Anyway, I think I'm in shock. She drank a little over an ounce in no time with that straw. And while it looked really messy, SHE DRANK FROM A STRAW!!! And she will only get better at it from here on out!

I just can't believe the progress she is making with eating and drinking!

I haven't been able to blog about our feeding therapy last Thursday. Allison tried a special cup, called a nosey cup. And that has been working great. It has been a struggle to find the right sippy cup that allows flow at the right rate (since we had to take the valve out since she didn't suck).

And, to make things even crazier, she set another record today - eating a total of 22.73 ounces by mouth! And Brandy has been able to get her to eat/drink at school, too. So, she gets to eat lunch with her classmates. And she does it with no motivation (no toys to bribe her for bites). So, she's making huge amounts of progress all around!

Thanks for sharing in my excitement!!! More later!
~Christy

Wednesday, May 26, 2010

Ouch!

Remember my post about our Norfolk trip and the blood draw?  Here's what her arm looks like a week later...



I told you it was ugly.  I will be glad when that's gone.  


Goodnight!
~Christy

Tuesday, May 25, 2010

26.2 here I come!!!!

Well, I did it.  I just signed up with the training team for the Suntrust Richmond Marathon in November!  I was thinking that I just couldn't make that commitment right now.  Or more importantly, this summer.  But, I think/hope having this to focus on, will help me through the difficult times ahead. 

It isn't going to be easy - on me - or Tom.  This is a true time commitment.  And it can't be done without a spouse's support.  I've been mentioning it to Tom here and there for the past few months.  And this past weekend Tom really surprised me by giving me the green light (insert brag about Tom and how great of a husband he is right here).  I don't think I realized how much I wanted to do this marathon until that moment.  I was SO excited!!!!


I will train with the Sportsbackers Marathon Training Team.  It is the same group that I trained with last summer to do the Half Marathon.  Training starts on June 5th.  And will continue for 23 weeks!  And I am so looking forward it!  


Thanks,
Christy

Sunday, May 23, 2010

MS 150

The MS 150 was this weekend.  It is a cycling event to raise money for Multiple Sclerosis.  It starts in Richmond and they ride to Williamsburg on Saturday (75 miles), stay overnight, then get back on their bikes to ride back.  They have an option to add a 25 mile loop on the way down there.  And, of course, Tom did.  

He did great.  Here he is coming into the finish on Saturday.  


I had no idea how long it would take him to get there.  I got there at noon and quickly realized that there were only a few riders in.  So, I went to find a place to cheer him on.  I guess I was expecting something like a running event, with people lining the street.  I was wrong.  There were lots of volunteers.  And one woman sitting on the curb (more people arrived later).  So, I went and introduced myself and asked if she wanted some company while waiting.  We talked non-stop for two hours!  We never ran out of subject matter.  It was great and I can't tell you how much I enjoyed that.  How often do you get to meet a complete stranger and just sit and talk for two hours?  



It is a small world.  At the start, Tom ran into Murphy's kindergarten teacher, Mrs. W.  Here they both are after the first day.


Here are some of Tom's teammates, Hank and John.


Tom and I enjoying some hanging out time with uninterrupted adult conversation and beverages.  It was a lot of fun!


Tom and I at the bar of the hotel after dinner.  



It was an early night since they had to leave at 7am to ride back to Richmond.  I leisurely awakened, and took my time to get back on the road myself.  I even stopped to eat breakfast - in a restaurant - on my way back.  It was great.  Again, I didn't know when he would get back to Richmond.  So, while I still had a nurse at home, I stopped off at the finish to see if I could catch him come in.  I missed him by five minutes!  Bummer!  


The ride is officially over - after 175 long miles!  He says he feels surprisingly good.  But he needs new bike shorts - with better padding in the bottom!  Poor guy.


I was worried that all the logistics of getting myself down to Williamsburg would turn out to be more trouble than it was worth.


Here's what had to happen:


I got up at 5:45am, and got myself ready and packed, packed all the bags for the kids, made Harlie's breakfast (had to make some cream of wheat, let it cool then puree it and mix it with some pureed peaches), and fed her and the boys.  At 9am, Nurse #1 came over to pick Harlie up for the day.  At 9:45 I took the boys down to my neighbor's house for them to spend the day with their three boys.  Thanks, B and G!!!!


At 7:30 pm, B brought the boys home and met Nurse #1 bringing Harlie home.  They got the kids ready for bed, and B left and Nurse #2 arrived.  Nurse #2 stayed the night.  And then Nurse #3 arrived in the am to take over.  And another neighbor helped out with the boys till I got home.  Thanks, C!  Whew!  I think Murphy was a little confused.  But I think my kids will turn out to be very flexible individuals one day.  And I don't think that's a bad thing. 


So, I'm sure you can understand how I would think that it might not be worth all the trouble.  Especially since I hate planning!!!!  That seems to keep coming up.  I guess it might be in my best interest to try to like planning a little bit.  


Anyway... It turned out to be worth it.  We had a great time.  It was so much fun to meet new people and to get to know the guys that Tom's been training with these last few months.  And it was great to be able to celebrate this accomplishment with him.  I know that if I did something like that I would want him there.  


So, a huge thank you goes out to all those that helped to make that happen.   I do think it is good to be apart from your kids every chance you get now and then.  I got the best hugs EVER from Harlie this afternoon when I got home.  I am so thankful to Cooper for her new found hugs.  She learned how to hug from watching him hug us (Cooper is such a snuggle bug).  


Oh, I almost forgot the best quote of the day!  On Saturday when Tom went to shower and change clothes, I went to get my stuff from the car.  I forgot my phone charger, so I plugged it into the car charger to call and check on the kids.  B told me that they had a good time at her son's soccer game.  She later asked Murphy if he would like to play soccer.  He said, "No, my family doesn't care too much for exercising."  


WHAT?!?!  


I hope you all had a great weekend, too! 
Thanks,
Christy

Wednesday, May 19, 2010

The joys of pureeing

I LOVE that Harlie is eating by mouth each day. In a "typical" day, she gets four oral feedings, which I think is great. She had another stellar day today, eating a total of 18.75 ounces!!! She set the bar pretty high with that 20 ounce day a few days ago. I have to try to remember not to push her too hard. It's just not realistic to think that she can do that - or better - each day.

But, as much as I love the progress, I HATE pureeing food. I really hate it. It's a royal pain in the butt. It is very time consuming. Especially since I am in the early stages of learning. 

Some foods need to be strained after pureeing (like berries). Some foods have to be cooked first (and I HATE cooking) and then cooled, and then pureed.  Geez, I'm tired just talking about it!

It is taking a lot of trial and error to figure out how much liquid to add to achieve the right consistency. I know that probably sounds ridiculous. I'm sure you're thinking, "how hard could that be?"  Well, I'm glad you asked.  Here's what I mean...

Put the stuff in the blender.
Put the top on the blender.
Turn the blender on.
The blender doesn't move all the food.
Turn off the blender.
Open the top, stick a wooden spoon in to move it around.
Add more liquid.
Put the top on.
Turn the blender on.
Repeat this process about 10 times.  No kidding. 

I don't mind pureeing peaches or pears. They are pretty easy. You don't have to stick a wooden stick into the blender for those.  But, I'm not allowed to limit her diet to peaches and pears.  Bummer.

Mistakes I've made:

Bought the very large can of yams.
Opened the can, poured the juice into a separate container (it is easier to add liquid than it is to remove it)
Poured the entire can (did I mention it was the very large size?) into the blender at once.
Repeated the process detailed above until I added all the juice after all, and then a whole lot more. Mental note to self, starches need a bunch of liquid or it just turns into concrete.
Yams were overflowing the blender, so I had to pour some into a separate container so I could mix half at a time.

Do you have any idea what kind of mess this makes?  The day I pureed the yams, I also pureed some other foods, too.  My kitchen was unrecognizable!    

Another mistake I made was trying to puree a bag of frozen fruit.  I don't know if I've mentioned it, but I'm not much of a planner.  So, when it came down to feeding time, I looked in the freezer, realized I didn't have any peaches or pears - but saw the bag of mixed fruit.  Great, I thought.  Um, yeah, not so great.  Mental note to self, let frozen fruit thaw before attempting to puree.  

We added fruit juice and water until it FINALLY moved with ease in the blender. And by the time I sat down to feed her, I was holding a bowl of JUICE, not pureed fruit.  So, I threw it away and started over.  Never gettin' those 30 minutes back...

Messes do not discriminate and are not limited to the actual pureeing.  Here's a mess I made heating up some frozen pureed peas.  






Tom was cooking our dinner while I was trying to prepare Harlie's dinner.  And I dropped the bowl of peas as I was trying to put it back in the microwave for a few more seconds of heating.  


I was so proud of myself tonight.  Allison wants me to add at least one new food per week.  Since we have feeding therapy tomorrow morning, I pulled out the bag of frozen mangoes (new) and let them thaw while we were all eating dinner. They pureed beautifully.  Ahhhh....


I think I might be catching on.  But I still hate it.  


Thanks!
Christy



Tuesday, May 18, 2010

Norfolk

So, we had our monthly trip to Norfolk today to see Harlie's Infectious Disease doc.  She's now been on antibiotics for three months.  The normal treatment for a bone infection is between three to six months.  I don't know if there's a connection (the doc said he doubted it) but she's been well the entire time, without so much as a cold.  In light of her upcoming heart cath and surgery, I was thinking it wouldn't be a bad idea to go on ahead and keep her on the Levaquin until her heart surgery.  Her doc agreed.

At first I thought he was going to let us skip the blood work today.  But then he decided he wanted to see her levels.  Her hemoglobin is on the high side, but it has been since February, and he's thinking that's just her normal considering her heart condition.  I'm not going to worry about it.  We'll be in good hands cardiac-wise in just a few weeks, anyway.

Getting blood this time was WAY more difficult than the last time.  Both of the lab techs had to come to work on her, so she held up the line for a while.  The worst is when they stick the needle in and then move it all around.  I think they call that "fishing" for a vein.  It's gross and I know it hurts.  So, she's sporting some good, ugly bruises on both arms.  We have to remove the band aids as soon as possible because she acts like her arm is broken as long as the band aids are there.

She's a funny girl.  Most kids her age show off their boo-boos like trophies.  And want band aids.  She never, ever points her boo-boos out.  It's as if she can't even see them.  Or maybe she's always seen them, so they're just a part of her.  I don't know.  I just think it's weird.

Anyway, after they finally got what they needed, she was soaking wet from crying, drooling and sweating.  And Brandy wasn't much better, considering she was the one who was holding her.  I've decided I will take the help in that area whenever it is available.  There are going to be (and have been) plenty of times when I'm the only one there and can't rescue her/comfort her when it's over.  I much prefer that role!

So, we go back in another month.  Lots of road trips ahead.  Fun, fun!

Monday, May 17, 2010

We have a date

Harlie's next heart surgery, the Fontan, is now scheduled for Tuesday, July 13th. Less than two months away. So hard to believe.

I don't want to do this again.

I dread every thing about it. The logistics, the being away from the boys (Murphy will be fine, but Cooper misses me when I go to bathroom. I don't know how we're going to handle the separation!) the food, the sleeping (or lack thereof), the standing next to her bed, seeing her after surgery, knowing that she doesn't understand, the stress, and the worry.

But I want her to live a happy, full, long life. So, it must be done.

Picking a date was difficult. No time is convenient for your daughter to have major heart surgery. Period. But I know that doing it now, while she is doing well and showing no symptoms (signs that her heart and lungs are having trouble) will give her the best chance at a successful surgery and recovery. Although knowing that doesn't necessarily make it any easier to take my perfectly fine and happy little girl in for a surgery that is very risky. The surgery itself is risky. And the recovery isn't easy. And it is a fact of life that some Fontans fail, which would be very bad.

Well, hopefully, her heart cath on June 10th will tell us that she's doing well, and her pressures are within a safe range for her to have surgery. Until then, I will try very hard to not think about it. Well, that's probably not going to happen. But, I'll try not to talk about it as much as I think about it. That's the best I can do.

Thanks,
Christy

Steelers weekend

We had some fun this past weekend. As you may know, Tom is a Steelers fan. And this past weekend was the James Farrior Foundation Richmond fundraiser.

Friday was Casino night. So, Tom and I had a date night and went to watch. People paid money to play poker, and there was a Steeler at each table. It was a really fun night. And here we are with Mike Tomlin, the coach. From left to right - Bill Tyson, Casey Krukowski, Mike Tomlin, me and Tom.



On Saturday, they had a softball game at the Diamond. It was the Steelers (and Richmond media) versus the City of Richmond Police Department. I could not believe how many people came out for a softball game. It was hot, but we had fun. And the kids really enjoyed being out, somewhere different.



I love this picture. You can really tell how happy she is. She is such a good kid, really.



Thanks,
Christy

Thursday, May 13, 2010

Fantastic Feeding Day!

Wow! Harlie had a GREAT day of eating!

Just a few weeks ago our goal was to get her to eat 3 to 3.5 ounces of food per day. Within days, she exceeded that goal. Then, on Tuesday at our feeding clinic appointment, I was able to report that she averages about 10 ounces per day.

Then today she ate/drank a total of 20.74 ounces of food/formula!!!!

All I can say is WOW! And WOO HOO!!!

I went to the grocery store today and bought a whole bunch of things for me to puree for her. I must admit that I'm not thrilled to have to learn so much about pureeing. Not the act of putting food in a blender and pushing a button (although surprisingly enough, its not that easy). I'm talking about how I pureed some mandarin oranges and it came out juice instead of a puree. So, I asked them at her feeding therapy appointment this morning and they told me to add mashed potato flakes. Another tip was to make cream of wheat and then mix it with a fruit.

I suppose each day I'll learn something new, and then each time will start to get easier and easier. Take today for example. I learned that a large can of yams requires a lot more water than you would think. And I also learned that the whole can of yams, plus all the water required, does NOT fit into my blender. Messy, messy, messy!

After I pureed the food I poured it into ice cube trays. Once frozen I transfer the cubes into bags labeled so I know what i'm giving her. So when it's feeding time, I can just grab a few cubes and defrost. Because there is NO way I can puree before each meal. It is WAY too time consuming. And WAY too, too, too messy!

I see a new heavy duty blender in my future.

Cheers!
~Christy

Wednesday, May 12, 2010

Pictures of Murphy

It probably would have been better if I posted these yesterday. You know, on his actual birthday? But, there's only so many things I can do in one day. So, better late than never I say!

Murphy arrived 5 weeks early. Unexpected. My water broke and I tried to ignore it. We had just started a complete renovation of our ONE and ONLY bathroom - THAT very morning (meaning no toilet). He was born on a Tuesday and we brought him home on a Saturday. I remember it so well. Poor Tom had recently started a new job, had no vacation, had to get a working bathroom installed before I came home AND he had to spend some time with me in the hospital. And we thought THAT was stressful! haha Rookies, we were!

May 11, 2004, Murphy weighed in at 5 pounds, 10 ounces.

















This one was taken on Saturday, at his party. Where'd that cute little crooked smile go?



I hope I haven't already told you this... but a few months ago I was zipping up his coat and talking to Brandy at the same time. Brandy was telling me a story and I said "that's hysterical" to her.

Murphy: Mommy, what's hysterical mean?
Me: It means something is really, really funny.
Murphy: Oh. Like that time I wrecked on my bike and you and daddy laughed really hard? Was that hysterical?
Me: Yes. Yes, Murphy. That was hysterical.

Mind you, the wreck was like 8 months prior to this conversation. He forgets what he's doing on his way to his room and remembers us laughing at him 8 months ago. Great.

It looks like I'll have a date for Harlie's 4th heart surgery soon. Her cath is scheduled for June 10th and it looks like her surgery will be sometime in mid-July. Just TWO months away! While most people are planning family vacations, we're planning heart surgery.

She's so worth it.

More later!
~Christy

Tuesday, May 11, 2010

Happy Birthday Murphy!

Today was Murphy's 6th birthday. So hard to believe. Where has the time gone?

Tom made him breakfast in bed. Waffles, blueberries, whipped cream, and bacon. Yum! Murphy got such a kick out of it.

Then, Tom and I went to his school to have lunch with him. It was the first time that I've been able to do that. At first I didn't think I was going to be able to, since we had the Feeding Clinic appointment earlier that morning. We were so lucky to be able to get in and out of there, and then Brandy called Transportation to have the bus come to the house to pick Harlie up for school. Since we had that appointment, I usually just drop them off at school. But, there was no way I was going to make it in time for lunch if I had to do that. And we made it home just five minutes before the bus got there. It was perfect timing all around!









It is a challenge to be a mom of an elementary school student. Well, at least it is for me. There are so many little things to remember. Like bringing treats for his classmates at lunch today. I'm just not good at that kind of stuff. I also never sent anything for the birthday board. Ugh. He hasn't said anything, so I hope he doesn't even know.

We had his birthday party on Saturday. It was at a local park with a playground. We had a great turnout and I know he had a great time.

I want to show you some early pics of Murphy. So, those will be next...

Thanks,
Christy

Feeding Clinic Appointment

This morning we had our big nutrition appointment with the Feeding Clinic team at the Children's Hospital here in Richmond. Harlie's feeding therapist, Allison, had already given them a report on how Harlie is doing eating by mouth. She is really doing great! And I can see that she is SO ready for the intensive feeding program! WooHoo!!!! Talking about it in the room with the team was amazing. I just can't believe we are here! I am so proud of her!

The scoop on the intensive feeding program is that there is a waiting list - about 20 kids long. And Harlie's name is officially ON THE LIST!!!

As of right now, it looks like the soonest she would start would be sometime in August. And, when the time comes, they will give me a three weeks notice.

This summer is going to be tricky. I can feel it.

As far as how the nutrition appointment went - Harlie is doing great. She weighs 29 pounds, 7 ounces and is 35.5 inches tall. She is in the 10-25th percentile for weight and 3rd percentile for height. She is the size of an average two and a half year old (she is three and a half).

She was expected to gain 1.2 ounces per week (since our September 2009 appointment), but instead gained 1.35 ounces per week. That is 107% of expected weight gain - which is totally fabulous - especially considering all that she's been through since September.

As far as growing in height - they expected her to grow 0.58 cm per month, but instead she grew 0.45 cm per month (78% of expected growth).

It is weird to hear some of these numbers (like 10-25th percentile) and that she gained MORE weight than expected. She is SO tiny! She appears to be skin and bones! And I had to tell them that she is still wearing size 18-24 months shorts! But, they say she is doing great, so I suppose it doesn't really matter.

On average, she's been eating about 10 ounces (of pureed food and Pediasure) by mouth per day. So the nutritionist recommended a different feeding schedule. One that gets her off her continuous night feeds again (which would be great). So, we'll start working on that tomorrow.

Exciting stuff, huh?
~Christy

Sunday, May 9, 2010

Happy Mother's Day

To my Mom, my biggest fan, my most enthusiastic cheerleader. I know you cut me a lot of slack, and I love you even more for it. Thank you.

And to all the moms in my wonderful family, my friends, both those I know personally, and those I know through cyber space.

I hope you all had a great day, full of love.

Happy Mother's Day!

Tuesday, May 4, 2010

She's full of surprises.

She's been doing great with her eating lately. I can't remember if I mentioned it or not, but we started to introduce pureed fruits again. And surprisingly, she's been very accepting.

So far, we've given her pureed fried apples and peaches.

Every day I'm learning new ways to use her communication device, and how to tailor it to our needs. I changed some of the foods on the food page to be more fitting to her. I removed the burrito, sandwich and salad, for example, and added peaches. As we introduce more variety, I'll add those, too.

I showed her what I added, and showed her she could ask for more peaches. And now she says, "I want more peaches." How great is that?!

Brandy took some peaches to school and Harlie ate all of it. Then asked for more!

And then yesterday, Harlie wanted to feed herself! And - very surprisingly - she did a GREAT job! She didn't spill that much, which is shocking when you think that she's NEVER actually fed herself before. And pureed peaches aren't exactly easy to keep on the spoon.

It's just funny how things go when you have a kid like Harlie. Just a few weeks ago, her feeding therapist said we needed to try and teach her that food is the meal and milk is the beverage to go with the meal (instead of her drinking her entire meal).

And now, just a few weeks later, I can't get her to stop eating the food to drink the beverage (which is where ALL of her calories and nutrition come from). And asking for more food! That's just funny. And so indicative of how erratic life is with her. She's always throwing us for a loop. Sometimes good loops, sometimes bad ones.

I am so, so thankful for the good loops. More thankful than words can say.

Thanks!
~Christy

Sunday, May 2, 2010

Mini Muddy Buddy

Today was the Mini Muddy Buddy run. A few weeks ago Tom asked me if I would do the Muddy Buddy with him. You work as a team, one runs, one bikes, then you switch places. At the end, the one on the bike veers off to some bike parking area while the partner waits. Then you both go through the mud together to finish the race.

Clearly, I said NO WAY. First of all, I don't like mud. Especially crawling all through it. No thanks. And two, I am definitely not comfortable on a bike on trails. Yeah, I would probably break something. And I don't have time for that.

So, Tom saw the Mini race - and thought it would be so much fun for him and Murphy to do together. I mean, what 5 year old doesn't like mud?

Murphy, apparently.





I felt so sorry for this pair. Two girls, who just happened to end the race all alone. They were not last. They just finished when no one else finished. Which I think was unfortunate. The entire crowd (and it was a large one) yelled at them (since they were the only ones to focus on) to get dirty. Once they got dirty, the whole crowd cheered. It really was hysterical.



Harlie and Cooper, of course.



The first part of the race (it was very short) was an obstacle course. Then the mud pit...



At first, he looked like he was having fun.



But Tom said he got mud in his mouth, and it all went downhill after that.








A "toughen up" talk. That didn't really work. They gave out Oreo cookies. And bribing him with the cookies finally got him to stop crying.




The hosing area.



After they hosed off (which didn't really work because they didn't have any water pressure) Murphy came over crying. I asked him what was wrong and he cried, "I have mud in my shoes!" I couldn't help but laugh. OF COURSE you have mud in your shoes!!!



When we got home, Tom hosed everything down in our driveway. He let Murphy run around the yard in the sprinklers. Oh yea, we're high class.

Murphy would come to the front door, ring the bell and ask us if he was clean enough. Tom told him no, and sent him back outside with instructions to rub the mud off. Then, Murphy would return, no cleaner. After about 3 times, I was in the kitchen and I could tell Tom was losing his patience. He yelled something about him still being muddy. Murphy was frustrated, too, because he lost interest in running around in the sprinklers alone and wanted to come inside. So, after hearing the exchange between them, I couldn't help but laugh at the situation.

The poor kid didn't want to go in the mud, hated being muddy, and was now getting yelled at because he was muddy.

So, where's our Parents of Year Award, anyway?

Good times! I'm sure he'll remember it fondly. Or need therapy. Eh, still worth it.
~Christy

Saturday, May 1, 2010

Heart Cath

Just in case you're curious...

We now have a date for Harlie's heart cath.

June 10th.

Someone at the hospital got wind of my blog entry from yesterday and by 9:30am I got an e-mail that I would get a phone call that day.

And I did.

The scheduler was nice, and explained what she was waiting for. But, a simple phone call to let me know what was going on would have gone a long way. And I would have cleared up the situation a lot sooner, and had my date a week ago.

Oh well. I have my date now and I'm "happy."

Her DC cardiologist gave the scheduler a window of 1 to 3 months. Combine that with the fact that Harlie seems to be doing well cardiac-wise (hasn't needed oxygen the past few nights with sats in the high 70s/low 80s) and I'm thinking I should calm down a bit.

One problem is that I'm no cardiologist. I'm a mom. Of a little girl that I love more than words can say. And I want to do everything humanly possible to make sure that we give her the best chance at the longest, most high quality life possible.

And it's my understanding that being able to get the Fontan (the next surgery she needs) is no guarantee. Pulmonary pressures could be too high, making the surgery and the result, if done, too risky. And since the only blood that gets oxygen is in the upper part of her body (her head - then the oxygenated blood mixes with the rest of the body's blood supply to get oxygen to the lower part of her body) the bigger she gets - the lower her sats get (because her body gets much larger than her head). And, I think typically, they like to do the Fontan at a younger age (even though there is no magic age for when it is good or bad). And I think she's out of the younger age category now.

At any rate, having this surgery hanging over your head doesn't feel good. And I would never want to push it to the limit and risk not being able to get it at all.

So, to get to the gist of it, I'm glad it's scheduled so we can get more information to make the best decision possible.

Whew!

Tomorrow morning Murphy and Tom are doing a Mud Run. I'll try to get lots of good pics.

Take care,
Christy