Ho, Ho, Ho!

I always knew my good intentions to mail out Christmas cards would come in handy some day. We're using all the stamps from Good Intentions of Christmas Past to send out Malkolm's stories, plus we bought 300 more stamps today. Looking at all these older Christmas stamps, wondering why I never got around to sending out Christmas letters and cards except for maybe once every five years or so.

We're down to the last stack of addresses, and we may have them out tomorrow if all goes well.

I remember when I started this stay-at-home mom thing. I thought, "Oh, the time I would have!" I just knew not spending 60 hours in an office somewhere would lead to my having way more time to do stuff with the kids and Sia, to send out Christmas Cards every year, to really keep the house clean, often have some baked goods baking in the oven ... and we must not forget always to make healthy dinners for my family. Well now. I think I'm in the middle of some kind of cruel joke. There's never a clean house (unless Sia does it, or someone else, like my niece, who cleaned the house just after we left for the surgery -- when we returned home from the hospital, I nearly fainted), we have peanut butter and jelly for dinner more often than not, and there are only baked goods in the oven because I occasionally move them there to clean off the counters.

I knew Malkolm helped out a lot around the house, but with him supine on the couch, it's even more apparent to me -- before his surgery, he would come home from school, help me with the Ebay packages, do his homework, empty and load the dishwasher, put out his clothes for the next school day, pick up the living room, help fold clothes and hold and play with Maina as I finished whatever I needed to do to get the packages to the post office and get dinner started. He's been helping fold clothes since he was 3-years-old (I think it is fair to say it is his least favorite chore, and he does not miss helping out with the laundry right now).

This young man has also been waking up to his alarm clock since he was in kindergarten. Setting his alarm the night before, getting himself up every morning without assistance, getting dressed, making and eating breakfast himself, taking his heart medicine, getting his school books and backpack ready for school and then waking me up to get him off to the bus stop.

I remember when my husband bought the alarm clock for Malkolm when Malkolm was getting ready to start kindergarten; I scoffed. He won't even use it, I told my husband, he's too young. I remember my own days of sleeping through the alarm day after day, my mother threatening to spray water on me to get me out of bed for school ... and then, here's this little kid, who has turned out to be more responsible about waking himself up than many adults I know, including myself. I must admit I was totally wrong about the alarm clock.

I guess this is all helping me to have a bit more self-discipline and also encouraging Malia to step up and take on more responsibility, which she seems to be taking in stride. I actually enjoy cleaning side-by-side with her, she has a very bright and encouraging spirit about her when we are cleaning together.

All in all, things are moving forward. Just looking at this pic from the night before the surgery, when we were messing around in the hotel room just taking random photos ... Malkolm has come miles since then, and the long and short of it is that I have too. I think that God really works on us through our kids, and my eyes are opened and my faith is stronger, and although I'm tired, I am growing and learning and enjoying every minute... even the tired and grumpy ones.

And maybe this year we will mail out Christmas letters ... oh um, well maybe not, we don't have any Christmas stamps left, after all. ;)

-Jennifer

My Greek Hero

Now we're home -- and dealing with a few new challenges. Our first responsibility is to keep the incision sites clean: the sternum cut that seems far too long, and the 3-inch incision over his left pec housing the defibrillator, and then the two holes where the tubes came out. Watch for fever, strange coloring or unexplained sweats or breathing patterns. So far so good.

Malkolm is slowly becoming more himself -- yesterday was a rough day; he was irritable and angry -- almost depressed it seemed. Totally picking fights with his little sis, and in general not handling things well. Of course, he had heart surgery less than a week ago, so some of the whole fish out of water thing should be expected, but there was just something not quite right about his mental state even in spite of the surgery.

Today, he was more himself than he has been since we left the ICU. I am seeing flashes of his normal sense of humor and I feel like the mood swings will go away completely once he's been off the heavier pain medication for a while. The ibuprofen seems to be managing the pain well, so we're sticking with that for now.

I realized yesterday that I never really thought about the psychological aspects associated with the surgery, and wasn't really prepared for the extra stuff outside of just taking care of my little man. He was just so courageous when it came to this whole thing, it's easy to forget that he's only 9. I know I keep saying that, (as much as I say it, should be enough reminder for me) but I guess if you knew him you would know exactly what I'm talking about.

So, now I'm kind of looking into this; talking to people who have had major surgery and asking those who have had children who went through something similar. I'm finding this reaction is not all that uncommon, and we will just ride the waves until things settle a bit.

The cool thing about having a child like Malkolm is that we can talk to him about this and he really understands it. He gets it. We had a long talk with him last night at dinner, and we all decided it would be best not to use the Tylenol 3 (Tylenol with codeine) anymore, and we can see today that it was the right decision. I do think it has made a huge difference in his mood, and he is not in any more pain than he was while taking it.

When his children's pastor was talking to him on the phone, and he asked Malkolm if he had run a mile yet -- Malkolm told him, "yeah, I just got back" without missing a beat. I have to admit I kind of breathed a sigh of relief at that point. And today, when he was reading the second book in the Percy Jackson series, he was going on about the parallels with "real" Greek mythology and the names of the characters and their attributes. I mean on and on. To the point where I had to tell him to go back to reading. This is the Malkolm I am used to, the ever-analytical, kind and giving boy I know to be my son.

He received a cool gift basket yesterday from our church, it was like junk food heaven. And today, another gift basket from a classmate -- who walked two blocks just to bring it by (it was heavy too, I was totally impressed!). Malkolm shared everything with Malia without hesitation.

People have called and are extending support in ways I never thought about. In a way, it's almost like having a new baby. We dusted off the baby moniter and put it in his room so he can call for help when he has to go to the bathroom at night if he can't get out of the bed by himself. So far he's doing really well, though, and it seems he is a stubborn goat and wants to do everything himself. I told him that he has to let me help him sometimes, just for my peace of mind. And the docs said it's good for him to do as much as possible, as much as he can handle. I'm thinking we might go for a walk tomorrow.

I am struggling a little to get him to drink plenty of water. This is a big deal and can have a huge impact on his recovery. He understands that if his body retains fluid, the fluid from the surgery (that was draining out of those tubes for a while) will also be retained, and this would not be good. If his body gets dehydrated and starts holding on to fluids we could have some real problems -- that is something I need to be more on top of ... maybe I'll set the alarm on my phone for every hour and a half or so, so I can remember to make him drink more. One thing that always works as an incentive is just reminding him that if he does get dehydrated he might have to get and IV to get more fluid, and that pretty much stops any complaining in its tracks.

At one point, he was talking about three giants that came into Percy's gym class -- one named Marrow Sucker, one named Skull Eater and Joe Bob. Apparently (bear with me here), they were cannibal giants, and Malkolm was trying to figure out why Joe Bob was the name of the third. Asking me all kinds of questions about what I know about Greek Mythology (times like these I wish I'd paid more attention in Mrs. Rooth's class during the Greek Mythology unit my sophomore year in high school). Wondering why the author named the third giant Joe Bob. We agreed it may be a joke -- because the other two names are so intense, and then there's this unassuming country-esque name like Joe Bob. And then the fact that the name for the giants actually translated to mean "Canadians" -- humor not lost on him (but sorta lost on me).

Anyway.

Tomorrow we have to go get a chest x-ray at a local radiology clinic and then Thursday we are headed to Thomasville to go to a pediatric cardiologist for his one-week follow-up -- and we bring the x-rays with us. The cardiologist we usually see only comes to Valdosta every so often, and he is not in town this week, so we travel. Guess I should get used to this.

April 12, we go to Atlanta again for the defibrillator follow up. We will go no less than every 6 months.

I am a bit distressed that the insurance denied the claim for the genetic testing, which means $5,400 out-of-pocket cost for Malkolm's testing if we can't finagle some sort of deal with them. What a buggar.We'll find out more on the 12th, but the docs seemed to think that maybe the genetic testing people might be willing to work something out.

We finally remembered to turn in the paperwork for his school so we will start homebound sometime soon. This is where a teacher comes to our home 2-3 times a week (three hours a week total) and teaches Malkolm what he is missing in class. He is also not marked absent these days either. He will not be going to school till after April 24. Long time to be absent, but I'm not really worried about him keeping up. He's a pretty sharp kid.

Malkolm has already survived a couple of direct chest pushes from his little sister -- sometimes she forgets and starts messing with him -- and he has learned to give her warnings when she starts to get a little rowdy around him. She was devastated when she realized she had hurt him; guess this is a learning experience for all of us.

ok, well. He's still up. Had to wrestle the book away twice already. Seems my little Odysseus doesn't want to exit book world. Time to follow up and make sure he gets in the shower and then on to bed.

-Jennifer

Arriving home!

Hello, everyone! I just got back from the hospital! My mom set me up with the laptop on the couch, and I started to type.

Back at the hospital, my feet ached when I started to walk, because I had been lying in bed for so long. My dad taught me a trick to relieve the pain. He said to rotate my foot while "pointing" with my big toe. It totally worked! :D

There are a bunch of small bandage strips down my chest on the place where they cut into my chest, and a few on my upper-left chest, where they put the defibrillator in. There are two small holes below the strips in the middle of my chest, where two drainage tubes were. It really hurt when then they pulled them out, and the holes that were there looked pretty ugly.

I had all my IVs and band-aids removed before we left the hospital. One of the IVs had to be replaced when I was awake last night, and they had to do three attempts to put in the IV. It was very painful.

When we took my first shower before we left the hospital today, I was afraid the soap and water would sting on my chest where the strips were, but it ended up being pretty comfortable. I loved the warm water on my skin.

I would like to thank my cousins in Long Beach, California for selling plates of food to raise money for my surgery. They had the fundraiser yesterday. THANK YOU!!

I can't wait to get started on signing all those stories that sold while I was in surgery! Thank you for all those who have cared about me and bought stories, and thank you for all the nice compliments about my writing. It makes me feel wonderful!

I have a few aches every now and then, but I don't mind much. It was a big relief to get out of the hospital!

-Malkolm

One Step Closer to Going Home

I wager most parents think their child is amazing. I remember when Malkolm was born, his head was shaped like an ice cream cone, his skin was wrinkly and hairy and his face was all squished up ... and I thought he was the most beautiful baby in the world. I remember when they placed him on my stomach, I didn't care if he had 10 toes or no toes. I didn't care -- I loved him intensely and immediately.

I remember wondering when I was pregnant with him ... wondering what it would be like and how scary it might be to have a special needs child, and I knew the moment they placed him into my arms that it didn't matter. I didn't care. I loved that little naked child more than I ever thought possible, especially for someone I hadn't met before. When they told us he was perfect and healthy, that was just icing on the cake. It wasn't until three days later that we found out there might be something wrong with his heart, and about two months later when our journey with HCM would begin.

Thinking about how far we've come, and seeing the young man he's turned into and the man he is becoming -- I just can't imagine our lives any other way. Life is good.

I have some great news! Yesterday at 2 p.m. we were moved to the Step Down unit. This is the place where patients go when they no longer need the minute-to-minute care of ICU. And, even better news, not 20 minutes ago, they took the drainage tubes out!!

Malkolm was not happy about the pain associated with that -- he told me that I was banned from cuddling with him (one of the big things we were talking about was when he got the tubes out, I could climb in the bed and cuddle a bit). The doc that took the tubes out asked him why he was mad at me, because she was the one that pulled the tubes out. And he matter-of-factly said, "because she allowed it!" I could tell that it was really feigned anger, because it really did hurt, and of course, within about four minutes, still with a forced fakey scowl on his face, he said "I guess you can cuddle with me a little" ... heh. So I got a few minutes in before they came to take him to x-ray. I offered to go, but he wanted to go by himself. Ok, well, at least I got the courtesy cuddle I was waiting for.

His usual quick-witted sense of humor has been a bit dimmed by his medication and pain, and I think mostly by the frustration he's feeling by not being able to use his arms to pull himself up into a comfortable position.

But he does have moments where even with his irritation his sense of humor shines through. Like when he was so mad and frustrated in the ICU when he had to wait for five hours to get a drink -- and after being told numerous times he could not have anything yet, he huffed and puffed and threw as much of a 9-year-old tantrum as he possibly could with the tubes and such limiting his actions. I told him that he would be able to have any drink he wanted once they cleared him, and he looked at me and said, through his tears, "Well, then I'm going to have a CAFFEINATED BEVERAGE!" (knowing full-well we do not usually allow him to have caffeine and that he probably wouldn't be able to have a drink with caffeine in it.) Might be another one of those you-had-to-be-there jokes.

We've had some issues with his blood pressure and heart rate (too high), blood sugar (rising) and fever (little too high at times), but it seems these things are pretty normal for anyone going through a surgery like this and are seeming to regulate themselves now. Of course, none of these things are normal to us, but it is what it is -- dealing with it in baby steps.

I read to him briefly during the really tough times (thanks again Mette for these great books!! Soothes the savage beast!) and that really seemed to help calm him down and then he could sleep again. My mom read to him too, and I have to admit, her voices are way better than mine. I remember she used to read to us when we were little, one of my favorites was The Mouse and the Motorcycle (I read it to Malkolm several years ago). I always loved Ralph's adventures when mom read them.

Last night, Malkolm and I were talking. He was too wired to sleep and so we were just talking about anything and everything -- I offered to read to him, but the light was too dim and I was struggling over the simplest of words simply because I couldn't make out the letters. He thought that was hilarious, and he started giggling -- except, because of his pain, he couldn't really giggle, so it was more of a high pitched slow wail. Just hearing it, I started laughing and then we were both laughing (wail) and it was hurting him, but he couldn't stop (wail). Just when we'd get it under control, he'd say something silly like "fuzzy bunny" or some other random ridiculous statement (wail), and we'd both start laughing again (wail). The nurse actually thought there was something wrong and came in to check on us. I felt like I was at summer camp breaking curfew, but wow was it nice to laugh with him.

After we finished laughing, he started to fall asleep and I just sat with him until he drifted off into a relaxed and fitful sleep, which was literally just about two minutes. I just sat there for a while looking at him in the silence echoing in my mind with sounds of his laughter, the dim light framing his face with the shadows. His long eyelashes draping over his cheekbones. His dark brows over those eyes. Just marveling at this wondrous gift that God has given us and so relieved that it seems the worst is over. I think he is the most beautiful boy on the planet, inside and out.

Malkolm is actually sleeping right now, the whole taking out the chest tubes was a pretty intense experience. He's earned a few solid winks, I think. Like the old Irish proverb says: "A good laugh and a long sleep are the best cures in the doctor's book."

More to come later ...

-Jennifer

:)

Big Bed, Little Boy

Wow, what an eventful 24 hours. We are in the ICU with Malkolm. Only parents and grandparents are allowed to come in, and only two at a time. I am emotionally drained, physically drained, but in a way uplifted by so many who have been affected by Malkolm's story and his heart (not literal heart, but I guess that sort of applies too). We have had little celebrations, like being taken off the breathing machine at 3:45 this morning -- and just about 15 minutes ago, the feeding tube came out.

He is slowly sipping apple juice and it's staying down which helps a lot with his spirits.

Since the article came out in the Atlanta paper, Malkolm has turned into a bit of a celebrity here, even though he's mostly unaware of the scope of this. I'm not totally sure how much he understands about what he has started with this idea. Not just the funds coming in from his story, but moreso the message that his faith and his writing brings with it.

I do want to make sure everyone understands that when Malkolm had the idea to sell his story to help pay for his surgery, we did not expect or even imagine that it would be like this. We were prepared to pay for the surgery using whatever means possible, because this little man is our baby (and a pretty cool kid, I think I'd like to keep him around for a while!! ), but I have to admit, not having to worry about my missing work and just being able to focus on Malkolm is a big deal, and a huge blessing.

As a work-at-home mom, I work more hours than I care to admit, at odd hours, many times into the wee hours of the morning. I do this because being around my kids, being available to my kids is something that is very very important to me. I missed SO much of his first three years because of my work (not working from home). If I had a dollar for every time someone told me "Hey Jenn, you don't live to work, you work to live ..." well, I guess I wouldn't need to work then, eh? (But knowing me, I probably would anyway).

I also want to make it clear that even without these funds from Malkolm's auction, we would have had the surgery anyway -- I'm concerned that some people might think that if we didn't raise a certain amount of money that he wouldn't have had the surgery, and that's just not the case. Although we are on a never-ending payment plan for our medical bills (my youngest was born 30 days early, and we spent a week at the NICU in Macon), we make it work and like everyone else, we do the best we can with what we've got. And we are unbelievably blessed with three amazing children, a strong support system of family and friends and the many other intangibles that go along with these things, money or not.

You know, when you have kids -- when you have it in your spirit to bring these little people into the world, you don't ever think that you will spend time in an ICU following heart surgery. Heart surgery is something that happens to older people, not children, right? However, from the lovely notes of encouragement I have received, I have found that MANY children have heart surgery and I can totally relate to everything that their parents are going through or have went through and I have appreciated each heart-written story of how their children have fared.

When Malkolm had this idea to sell his story; this 9-year-old didn't really have an idea about cost or anything -- he just wanted to help. I'm so thankful for my friends on the Ebay powerseller board, without their encouragement, we probably would not have done this, and it definitely would have not gotten around like it did. My friends, most of whom I have never met in person, are part of a community of people who banded together in vociferous support for my son and his idea and I don't think I can ever fully repay their kindness.

I am still laughing about our first night with the Ebay listing, Malkolm and I watching the notifications pop up announcing each new sale, high-fiving each other till 1 o'clock in the morning while the rest of the house slept, with me sprinkling words of encouragement in there (Malkolm, don't worry if you only sell 20 stories -- this is still really neat!! etc etc).

Ahhh, well. For now, we'll just focus on him getting better. He's proud of his "pain button" that he can push when he needs it, and he's not needing to push it very often at this point, so I'm pretty happy about that.

We're getting kicked out now for about and hour and a half while the docs do their rounds, so I'm going to close this long and somewhat rambly post now.

I'm just looking at him laying in the bed here -- this boy who is so much bigger than the little boy I have in my head, and yet so much smaller than this bed he is laying in. The bed makes his chest look not quite as broad and his hands look not quite so strong. I can see he is turning into a man right before my eyes, but he is still my baby. Always will be my baby.

In God's Hands

When our children are young, we do everything for them and they can't really do things for themselves. We change their diapers, we put food into their mouths, we cradle them in our arms when they are sad, hungry or maybe just want to be cuddled.

As they get older, they start to learn to do things for themselves. They get more and more independent as time goes on. I remember when Malkolm was just about 2-years-old, a woman I worked with told me that the weaning was the first step to him being an independent adult. That when he weaned, he would from that moment gradually continue the separation process until he was grown and living with his own family. I remember not really liking that way of thinking -- even though technically it's true; that's not something you want to think about when it comes to your children.

I know if Sia and I do our jobs correctly, ironically, we are teaching him to live apart from us, when every fiber of my heart wants it to be otherwise. But, that is just part of the blessing of being a parent. That love that we feel -- when it seems like there just can't be any more, another gusher opens up, spewing joy and happiness into every nook and cranny of our lives.

So now, here we sit, in this waiting room. There are big yellow circles on the floor, cheerful toy tables with colorful balls and beads, chairs that are much too small for me to ever sit on. And the families. Families waiting like us for their children to be delivered safely into their arms following their procedures.

There are white phones placed among the chairs in the room -- the white phones that bring the news from the surgeon during surgery. The white phones are a visual connection that we have with the surgical staff; even though we can't be in the room, just seeing those phones is comforting in a way.

One of the nurses just called not too long ago and let us know that Malkolm went to sleep with no problems, and the surgery was underway. This was about 9:45 a.m. .... We're expecting a call in about an hour with another progress report.

My baby, in God's hands. Nothing new. His strong hands have been carrying Malkolm since birth and I know Malkolm is not alone.



Thank you for your continued support and prayers. What a difference this makes!!!

-Jennifer

Happy Birth Day Malkolm!

The surgery is scheduled for 7 a.m. tomorrow, well, I guess that's today now. We're supposed to be there at 6:30 a.m.; it will take about an hour for Malkolm to get anesthetized and then surgery will take about three to four hours. So my guess is surgery will be at least 7:30 or later, but I'm not too worried about that.

The constant parade of physicians coming in today -- with each one having their own specialty and their job concerning Malkolm's surgery -- was oddly comforting, even when they talked about the risks.

We had another blessing tonight at dinner -- that kind of encompasses the overwhelmingly positive response we have had through this whole experience.

We went to Carrabbas italian restaurant for dinner. Malkolm chose it -- he had told us that he wanted to go there because he likes how you can dip the bread in the olive oil and eat it when you are waiting for your food. I found out on the way, though, that the reason he picked this restaurant instead of Olive Garden was because he knew I liked it. And that is SO Malkolm.

Just before we got our food, I made up an excuse to go talk to our waitress to see if they sing happy birthday or anything like some restaurants will do for people's birthdays and such. Even though his birthday is in September, surgery day is the first day of his new life, I thought it would be a neat surprise for them to sing happy birthday to him.

The waitress was standing at the hostess stand with the hostess and another waiter. She said they didn't sing, but they did have a cake and such -- I told her that was totally great and I told her about Malkolm's surgery. As it turned out, after we finished our wonderful meal about 10 waiters and waitresses not only brought the birthday dessert to him, but they also sang happy birthday to him, something they don't do, but they did it for him. They also gifted his meal, so his meal was free for us.

The immense response we receive is just like this -- from everyone. People we know, people we have never met, people who have been friends with us for years. The response is engaging and captivating and utterly humbling. People embracing him and loving him and us, (selfishly) it makes this jagged pill a little easier to swallow.

And the notes we receive, of people finding their faith again, finding inspiration in this young child's faith is probably the most life changing thing of all of this. To know that a worthy message is being passed along, a message of pure, child-like faith is truly uplifting.

I am okay with this peace that defies all understanding. I will do my best to post tomorrow to give an update. Thanks for reading and especially thanks again for caring about my little man.

So as we approach the morning, I know in about seven hours my baby will be on a table with white sheets and a whole bunch of really wonderful medical staff around him, taking a big breath when they put on the mask, then falling asleep to undergo his surgery ... and I will be in the waiting room with my family and friends, holding on to the faith he gave me to hold until he wakes up and I can give it back to him.



-Jennifer

:)