One last post for 2011...

I hope everyone had a Merry Christmas and a Happy New Year!!  Looks like this will be my last post for 2011.  Wow!  Hard to believe another year has flow by!  Not too much to report since my last update.  We picked up Atticus' new leg braces, and he's doing so much better walking with the pivoting ankle joints!  He's even started learning how to turn his walker, instead of just going in straight lines!  His new glasses are sooo cute!  He looks like a little Alfie from "A Christmas Story"! Lol!!  Thankfully, Atticus doesn't have to wear his glasses all the time; just when he's working with his OT.  They really have made a difference though.  He's having a much easier time being able to match up shapes, or string beads, etc. 

We had a great Christmas around here!  Atticus got several new books, some new clothes, and of course, some new toys!  He really likes his little scooter his Nana gave him.  It has a bouncy ball under the seat, so he can bounce on it as he rides it (which is REALLY good practice strengthening his legs!), and it squeaks and squawks every time he bounces!  He also got a new puzzle that he loves, and a new Cookie Monster "MP3 player".  It's so cute...he turns the knob, and it plays 3 different songs.

I finally took all the decorations down today.  Atticus was not pleased when I put him in his crib while I disassembled the Christmas tree.  But 1 broken ornament was all Mommy needed before I decided he could spend some time in his bed playing with his new toys!  Lol!  Sandy decided to crawl in and keep him company while I wrapped all the breakables.  She's such a great helper!

I'd been lying if I didn't confess that I've mentally begun the countdown until Atticus' pre-Fontan Cath.  I've been trying not to think about it too much, but I've already begun to scrub the house in preparation for my leaving like a pregnant woman who is nesting!  I guess getting everything in order here is my OCD way of trying to prepare myself mentally for what's ahead.  A something which I have absolutely no control over.  My brain is already playing out scenario after scenario, like what if they decide he needs the Fontan ASAP?  What if we don't have it for another month?  And the really scary, what if they decide Atticus doesn't qualify for the Fontan??!  What do we do then??  I don't know how people without a faith go through something like this.  It's too much sometimes.  I'm so very thankful for a God that I can share my problems with, and then let Him handle them.  It doesn't stop my mind from running through all the upcoming "what ifs?", but it does help me not to loose sleep over them.  I've said it from the beginning, and it hasn't changed now; I know that God has a plan for all of this, even if I can't see what it is right now.  I'll keep trusting in Him, and keep asking all of you to "Keep on prayin'!".

We finally have a date....

Hello everyone!  Aren't you proud of me...I'm updating again! Lol!  Well, like I said on the last post, Atticus has had quite the round of check-ups this past month.  We visited our Orthopaedic doc, Dr Locke, who gave us a new prescription for leg braces.  He and Atticus' PT want to change them up a little (and he's outgrown his old pair) so that the right leg has a hinged joint at the ankle to make walking easier, and just a support for his left foot to keep him from rolling it inward.

We also had a visit with our Opthamologist, Dr Cheeseman, who also finally prescribed Atticus a pair of glasses.  (Poor guy!!)  Atticus is ever so slightly near-sighted and has a very slight astigmatism.  Dr Cheeseman said that normally, he probably wouldn't even recommend glasses, but since we had noticed that Atticus was having a little trouble with some of his fine motor skills (ie he would be just off of the hole when trying to thread bead on a string), he went ahead and gave him a prescription.  We've gotten them ordered, but it'll still be another week or so until they come in.  I'll post pictures when I can!!

We also had an appointment with the Pulmonologist, Dr Brown, where we got some great news!!  Dr Brown said that Atticus' lungs continue to sound great.  He even decided to begin weaning Atticus down off his dosage of Sildenafil!  Atticus had been on the same dosage levels since he came home from the hospital, so Dr Brown decided that Atticus is big enough where the dose probably isn't doing much for his size now.  He told us that we could slowly wean down from 3x a day to 2x a day.  If that goes well, after a month, we can wean down to only once a day!  Then after another month, down to nothing!!  Hooray!!  I'm really excited that I only have to give it twice a day right now, because the 3rd dose had been the 1AM medicine.  That means that I can actually go to bed at a decent hour now!!  YAAAAAAAAY!!  The extra sleep has been SO nice! :)

And of course, the big appointment of the month was our visit with Atticus' cardiologist, Dr Williams.  Dr Williams was very happy with the sound of Atticus' heart and all of his stats.  Atticus is up to 26.3lbs and 34 inches long.  (He's my big boy!)  Dr Williams has decided to go ahead and get the ball rolling towards Atticus' Fontan surgery.  We actually just got the phone call from the hospital today to set up the next step, which is a Cath procedure to test the pressures in Atticus' heart and lungs.  They have to do this pre-surgery cath to make sure that Atticus is a candidate for the Fontan.  If the pressures are too high/too low, they wouldn't be able to do the Fontan.  (Which would really stink!!)  So basically, how soon Atticus will have the Fontan surgery will depend on what the docs/surgeons see when they do the Cath.  Right now, we're scheduled to go to the hospital for the Cath on Jan 11, 2012.  So as always, keep on prayin'!  Please pray for good news and good health in the meantime!  I'll continue to keep everyone updated while we wait! :)

Atticus' 2nd birthday!!

The Birthday Boy!!

Hey everyone!  Wow, so it's been a reeeeally long time since I last updated my blog, and there has been so much that's happened.  Be prepared; this is going to be a long blog post! 

Obviously, it's been a big day here in our household because it was Atticus' 2nd birthday!!  It seems so crazy that two years ago today, I was meeting my 3rd child, Robert Gary Attticus, for the very first time, that it would be a week later before I was able to hold him for the first time, and that it would be another 2 months after that (on Thanksgiving Eve) before I could hold him again.  Now it seems so strange to think of all the things that we went through with him; how very close to death he was time and time again, and yet today he's active, playful, and curious.  It makes me stop and say a little prayer of thanks to see Atticus crusing around the furniture or with his walker, to see him able to eat his birthday cake this year, and for him to be able to communicate with us through sign language.  I squeeze him a little tighter and hold him for just that moment longer before setting him down to bed.  Today I've shed so many tears, but they've been tears of overwhelming gratefulness.  I am so grateful to God for allowing me these 2 years with Atticus. I'm grateful for all the doctors and nurses that devoted themselves to Atticus' care during that intial 160 days in the hospital.  I grateful for the doctors, nurses, and therapists that have devoted themselves to Atticus' care in the 570 days since we've been home from the hospital.  I grateful to all my friends and family that have given to us in so many ways financially, emotionally, and physically.  And I'm grateful to all of you.  Those that check in to see how he's doing from time to time.  Those that prayed for him, and that are continuing to keep him in your prayers.  Atticus has taught me some many things is such a short amount of time, and I'm grateful for that too.

Ok, on to some updates.  We have a big cardiology visit coming up later this month that will further decide exactly what road we will take in regards to Atticus' Fontan surgery.  Please keep us in your prayers about this.  I know that the Fontan has to happen.  There's no getting around it, aside from a transplant--and well, I REALLY don't want to have to go down that road.  But the closer the appointment comes, the more my mind starts swirling at the mere thoughts of another open heart surgery and hospital stay.  I know that I'll get through it, but just pray that I can ask all the right questions, that the cardiologist and I can make the right decisions regarding Atticus' care, and that I don't lose my mind to the dreaded "what ifs...?!" in the meantime.

Atticus has made so much progress in his therapies lately!  He is still crawling, but at lightening speed.  He's crusing around the furniture and getting bolder about how far is "close enough" to reach from piece to piece.  He's also getting A LOT better with his walker.  I usually have to actually hold the back of it just a little to slow him down right now.  He'll get going a little too fast and run himself over with it otherwise! LOL!  He's also able to bend/squat down to retrieve an item instead of having to sit down to pick it up.  And he's even starting to use his legs to bounce/jump a little when holding onto something or sitting on his little bouncy horse.

His fine motor skills are improving a lot too.  I actually think his learning sign language has helped his hands become more flexible as he's trying to learn new signs.  He can drop items into a container, retrieve them, hold multiple items in one hand, and has even learned to start scribbling with a crayon or pen!  He's doing great with the sign language.  He can do at least 20 signs, and knows several others that he hasn't mastered yet.  His two-way communication has improved so much!  He can usually let you know what he wants or needs.  He's even recently started putting 2 signs together such as "cookie monster" (his fav!), "want eat", "want (fill in toy)", etc.  Atticus will even tell me when he's ready for his nap!  (Try finding many other moms that can say THAT about their 2 year old!  I couldn't with my older two!)  I'm constantly amazed at his ability to learn and reason, to problem solve, and to have imaginary play when I think back to the fact that he had two brain bleeds.  God is so GOOD!!  Again, I'm thankful that God has granted my son the ability to over come these obstacles, and that Atticus is living proof at what God is able to do!

Atticus has also come a LONG way with his eating.  In the past year we've gone from total oral aversion and having to receive all his nutrition through his G-tube, to eating (and usually demanding!) table food.  He still has to have his G-tube right now, but we've been able to replace 1 "meal" entirely with table food, and can usually get at least 1/2 another with table food.  Everything has to be torn in to very small pieces, but I've seen Atticus polish off an entire cheese quesadilla, 1/2 a PB &J, a baby size bowl of mac n cheese, an entire baby bowl of cheerios, 6 oz cups of yogurt, etc!!  He's also recently figured out how to use a straw.  My mom bought him a spill-proof cup with a straw and he's starting to LOVE it!  He likes water best, but he's starting to come around to the occasional juice.  He doesn't usually drink more than an ounce or so, but it's major progress in our world!  I can finally see a light at the end of the G-tube tunnel!!  My only worry is that once he has his Fontan and has to be re-intubated, that we'll end up back at square one with his feedings.  I'm praying that we can get him off a ventilator within a day or so after the surgery so hopefully the effect will be minimal.  (Again...one of those dangerous "what if" rabbit trails that I'll drive myself crazy with if I don't restrain myself!)

I think that about sums up the last few months here in the realm of the Amazing Attiucs.  He's getting stronger and stronger with each passing day.  Atticus has several appointments this month into the first part of next month, so I'll try to remember to update once we've made it through all those appointments!  Thanks for checking in and as always, Keep on Prayin'!

Did you really just say.......?

Hey everyone!  Just wanted to give a quick update on Atticus.  He's doing much better since my last post.  Thankfully, we haven't had any repeats of that performance.  We had our cardiology visit on Monday, and everything is doing well.  His heart function is good, and he's up to 26lbs and 34 inches long!  Dr Williams decided to do another echocardiogram since it had been about 6 months since his last one.  Atticus was pretty well behaved during the process, but you can tell he's starting to get to the age where he really doesn't like lying still for that long.

Everything was going fine just like a normal check-up, when Dr Williams brought up the subject of Atticus's Fontan.  He thinks that after his next visit in October (a few weeks after his 2nd birthday), we should probably start the process for the next open heart surgery, with it probably be scheduled sometime in January 2012.  I'll admit that I've know that this day would be coming since I learned of Atticus's heart condition at around 24 weeks gestation, but it still hit me like a ton of bricks.  His decision was based more on Atticus's weight than anything to do with his heart function, but it still makes me panic just a little.  I can't help but think about everything we went through with Atticus during that first 160 days.  My mind starts going down all the little "what if" rabbit trails, and I have to force myself to focus on today, the here and now.  Nothing is set in stone yet, so there's no sense in worrying about something that hasn't happened yet, I keep reminding myself.

Other than that, Atticus is doing great!  His PT and OT are having to both come up with a new list of goals for him because he's managed to finally check them all off!  We've been practicing walking in his reverse walker, he's finally letting objects go inside of a container, he's starting to learn more and more signs, and he's getting more and more imaginative in his play!  Atticus LOVES the video series Signing Time.  He's made the connection that the signs mean different things, and he's fascinated.  He's learned to sign: ball, more, Mommy, Daddy, baby, book, water, sleepy, "Signing Time", eat, fish, dog, flower, bye-bye, milk, cheese, and he recognizes even more signs!  Everytime he sees a TV he starts making the sign for "Signing Time".  He even did it when we were having his echocardiogram done.  lol!  He thought the screen for the machine was a TV!

I think that's about all for now.  I'll keep everyone updated as we learn more about Atticus's Fontan.  Until then, keep on prayin!

Not the way I wanted to start my morning......

So yesterday was a pretty stressful day, and unfortunately it started very early at 5:30 AM.  I had given Atticus his last medicine at around 1:30 AM and gone to bed.  Then, around 5:30 AM, I had woken up to use the bathroom.  On the way out of my bathroom, I noticed the smell of formula.  This in and of its self is not totally unusual.  Atticus has a tendency to toss and turn in the night, and sometimes he disconnects himself from his feeding pump in the process.  So I walked over to his bed and reached down in the dark to check his connection, and felt that it was intact.  So I thought that he must have gotten the extension tube totally twisted around and actually disconnected it from his Mic-key button.

And that's when I felt the balloon, and totally went into freak mode.

For anyone who's not familiar with a g-tube, the balloon is what is inflated on the inside of the stomach to hold the Mic-key button in place.  So when I felt the balloon, there was one imminent question in the front of my mind.....How long has this been out??!

I immediately ran over and turned on the light switch (Poor Robbie!), ripped Atticus' formula-soaked blanket off of him, and pulled him out of the crib and laid him flat on the floor.  But once I lifted up his shirt, I saw that the answer to that question was...."for too long".  The hole for the Mic-key button was almost completely closed.  As I sat there on the floor, swearing and crying and praying, a million thoughts started running through my brain.  "Do we go to MCG (which is closer) or to we try to go for MUSC (who was more familiar with his case)?  What should I pack for him?  Thank God the older kids are spending the night at Nana's.....etc"  Then my brain took the course that all mothers' brains take, which is inevitably the worse case scenario.  I was sure that this would mean another surgery to replace the Mic-key button, which would mean he'd have to go on a ventilator again, which meant more sedation, etc, etc, etc.

I finally managed to pull myself together after about 5 minutes to get my butt in gear.  Robbie and I got dressed, he got the car ready while I packed a bag for Atticus, and we headed out the door towards MCG.  Thankfully during all this craziness, Atticus was laughing and squealing, thinking that he was getting to go on an early morning car ride.  He wasn't in any pain and was pretty pleasant.  Thank goodness for that.  I think I would have totally lost it if he was in pain or "screaming" the whole time.

We got to MCG by about 6:30 AM and went to the ER.  We finally got through triage, and they sent us over to the Children's side of the hospital.  Thankfully, the doctors were able to get a thin catheter in the hole, and slowly (over about 3 hrs) stretched it back open large enough to place a new Mic-key button.  The process hurt Atticus and he would cry whenever they were "stretching" or finally placing the button.  It just broke my heart because he was doing his silent scream (due to the vocal chord damage), his eyes full of tears, and he was just reaching up for me to grab him.  It was torture....for Atticus and for me.  Poor Robbie couldn't even stay in the room.  He had to walk in the hallway every time they'd do something to him.  He's kinda squeamish when it comes to that sort of thing.  That, and he can't stand to watch someone make one his children cry.  It instantly infuriates him.  So he just excused himself in the hallway so he wouldn't have to watch.

Finally, at about 10:30 AM, Atticus had his G-tube back in, I had given him a little bit of formula because he was STARVING, and we were headed home.  Not 15 minutes after we pulled out of the parking garage, poor Atticus puked up everything I fed him.  His stomach had been empty for too long, and had just been through too much abuse.  We pulled over, got him cleaned up, and finished heading home.  He was passed out within another 5 minutes after that.  I caught him up on some food and medicine as soon as we got back to the house, and we spent the rest of the day trying to take it easy.

I have to say, Atticus is quite the little tough guy.  Other than being really hungry for the rest of the day, he didn't even shed another tear.  And by today, he was back to his usual schedule.  He just continues to amaze me at how resilient he is.  Thanks to everyone who prayed for us yesterday during all the craziness.  I'm just SOOOOO thankful that Atticus didn't end up needing another surgery after all.  That alone was an enormous lift off my shoulders.  I suppose can't be too mad....that was the first time in almost 15 months that we've had to make a trip to the hospital with him for an emergency.  Ok, thanks for letting me vent about my stressful day yesterday!  As always, keep on prayin' for us!

Latest update on Atticus

Hello everyone!  Atticus is doing great, and is certainly coming into his own!  There still isn't too much to report as far as changes to his medical routine.  He continues to make progress, his heart function is still holding up well, and he is getting stronger all the time.  He is continuing to pull up on everything, and is has even started cruising just a little bit!  Oh, and even though he's only 20 months old....he has already begun the dreaded "terrible two" stage.

Ah yes....the terrible twos.  It's really a misnomer.  All my children have started somewhere around 18 months....and I'm still waiting for my 5 year old to stop! LOL!  Atticus, though, seems to have gotten the worst case of it.  I suppose understandbly so.  He has a more limited vocabulary due to his hearing loss and vocal chord damage, so he tends to get frustrated more quickly.  I felt bad that he really had no way to express himself, so I got in contact with the folks from the School for the Deaf & Blind, and we have finally begun learning American Sign Language!  We had already begun to learn a few signs with Atticus' speech therapist, but I wanted a more in depth study.  I've already resigned myself to the fact that he'll probably need yet another surgery, this time on his vocal chords, at some point in the future to repair them.  I also know that this won't happen until after his next heart surgery, since he'll be reintubated for a while, and I don't want him having to be 3 or 4 years old before he's able to have a way to talk.  So, ASL it is.  Sandy and Gideon have really loved it as well, and Atticus has already started making a few of the signs (although not consistently) for Mommy & Daddy!  I'm just hoping he can pick them up fairly easily.

That's really about it for now.  He's doing the usual naughty 20 month old stuff....trying to get into the cabinets, destroying anything he can lay his hands on, and getting into everything he's not supposed to!  Hehe.  He's also becoming more and more aware of everything around him, and exploring constantly.  He's getting (slightly) better about eating actual baby food, and is even willing to let me touch my "big people food" to his lips so that he can smell/taste it.  He won't eat any, but he'll let you touch it to his tounge so he can taste it.  Just saying.....french fries defy all barriers......haha.  I'll be sure to update more later....especially if he starts doing something else new!  :)  As always, please....Keep on prayin'!

A very Happy Memorial Day!

Happy Memorial Day everyone!  Just checking in with what seems to be monthly updates.  Not too much has happened since my last post, but I'll try to remember to include everything that has happened.  Atticus is continuing to do really well, and is just crawling all over the place.  He even gave me a special present today.....he stood up ALL BY HIMSELF!!!  Hooooooorrrrraaaaaay!!  He even managed to do it a couple of different times!  That makes me one happy mamma!

Not too much has changed as far as the doctors all go.  His cardiologist continues to be happy with his progress, and is still waiting for the 30lbs mark as the indicator for the next surgery.  On a brighter note, we just visited his pulmonologist last week, and he said he thinks we can start trying to wean Atticus down on his O2 levels at night, with the eventual goal of getting him off O2.  (yay!)  No real changes other than that.

Atticus has also been doing really well on his feedings, and is starting to be more consistent with eating more than just a few bites, and we've even managed to get down a whole jar of baby food!!  Whoo hoo!!  He's also learning mores signs and is getting better at using them when he wants something.  He's just getting to be such a big boy!  When he stands, its amazing how tall he really is.  I'm so used to seeing him in the sitting position, or crawling, that when I see him stand it just shocks me to see how tall he's actually gotten!  Thanks for continuing to keep us in your prayers!

So I've been a little slack....

It seems like I always start my posts with an apology for not posting sooner, but sorry it's been a little over a month since my last post.  What's my excuse?  Well, I have been a little busy....but mostly, I guess I was just a little slack.  So I'll try my best to catch everyone up to speed.

We've had some little accomplishments since my last post.  Most notably, Atticus has finally started waving "bye-bye", and he's gotten MUCH better at crawling!  He still refuses to extend his arms, but he can really move on knees and forearms.  Blink and he's half way across the house!  He was a little resistant at first to crawling across the vinyl flooring in the kitchen, mostly, I think, because it was so much colder than the carpet.  But that's not a problem any more! ;)  Now to teach him to stay out of the cabinets!  He likes opening and slamming them closed because he can actually hear it, even if he's lost his hearing aids along the journey somewhere.  Robbie and I keep telling him "no" and shaking our heads, but he's a comedian.  He crawled in the kitchen earlier while I was cooking dinner, sat in front of one of the cabinets next to me, looked up at me, smiled, shook his head "no", and proceeded to slam the cabinet door!  He just thinks everything is a game.  Yep.  Definitely his father's son.

We've also had another round of visits to the various and sundry specialists, so I'll run down the list.  We had a great visit with Dr Williams (cardiology) at the beginning of the month.  Atticus' oxygen sats we staying in the mid 80s.  He weighs 24 lbs 13 oz and was 32 inches long.  So only a 7 oz weight gain in the last 2 months, but Dr Williams was still really happy with him.  He didn't do another echo-cardiogram this time since he'd just had one the visit before, but listened to his chest and was satisfied.  He said he's betting that since Atticus' weight gain has slowed, now that he's becoming more mobile, it'll probably be a little longer before Atticus is big enough for the Fontan, assuming that his heart function remains good.  That's news that suits me just fine.  Dr Williams was so happy with him that we get to go 3 months this time before we have to go back!!  Yay!  However, this is at the same time a teeny bit scary since I use those visits to reassure myself that he's really doing as well as I think he is......but I think saving the gas money driving an hour each way is well worth it. :)

We also had a great visit just last week with Dr Kinsman (neurology).  Dr Kinsman always makes me smile.  He's a bow tie doctor, with metal round rimmed glasses, slightly balding, but very kind.  He's always happy to see Atticus, and remembers him without even having to consult his chart.  Let's face it.  It's a unique name and he's a unique kid.  He always seems just genuinely impressed with how well Atticus is doing cognitively, and remarks how he had such a "massive brain bleed" (which he added was on the left side of the brain this trip), and how great his social skills are, etc.  In fact, Dr Kinsman was so happy with Atticus on this trip that he said he didn't see any reason for us to have to come back!  He added that he'd only want to have us come back for one more visit and probably EEG right before Atticus has his Fontan (likely the same time as the pre-op Cath), so they could have a base reading before surgery.  This is fantastic news!!  Seventeen months ago, we didn't even know if these brain bleeds would kill him, let alone any neurological complications (like the seizures) that might occur as a consequence of them.  Now, you're telling me that not only has he remained seizure-free, but we're actually CLEARED from neurology...............it's why he's my Amazing Atticus.  He's God's miracle to me.

And finally, we had an appointment with ENT for Atticus' vocal chords.  This visit was basically a waste of time.  There.  I said it.  I like Dr Driscolo, but it almost seemed like he didn't even know why we were there.  Not much has changed.  Obviously, Atticus still can't talk, so we know his vocal chords aren't completely healed.  Even if they decide to do corrective surgery, it certainly wouldn't be until after his Fontan because they're just gonna have to shove a tube right back down his throat again.  Like I said, I like Dr Driscolo because at least he realizes there's not point in putting Atticus through an extra surgery.  The only good thing (I guess) that came out of this visit was that Dr Driscolo wants us to have another swallow study done.  It's been a little over a year since his last one.  Thankfully he just gave me an order for it so that we don't have to drive all the way  across the state to have it done.  He just circled the fax number and asked that wherever we have it done to be sure to send him the results.

Well, I think that's really about it.  He continues to grow stronger and amaze me more and more each day.  His personality is starting to bloom, and he is certainly beginning the challenging stage of the "terrible twos" which is uniquely different from his older siblings because of his hearing loss.  His language skills are getting better, and he's even getting better at signing and using his hands.  He's such an awesome little guy.  As always, keep on prayin' for us!

One year later.....

I'm SO excited today, even though its cloudy and gray outside.  Why?  Because today, Atticus has officially been home from the hospital for a whole year!!!  I can hardly believe it!  Wow, I have a feeling this is going to turn into a long and wordy post...so consider this fair warning!  :)  So much has happened in the past year, but two big things that I can say that have NOT happened in this past year, is no visits to the ER and no hospitalizations!!  Hooray!  That doesn't mean we haven't fought with colds/flu during this year, but we have at least managed to stay healthy enough to remain home, with only trips to the pediatrician's office for meds to fight off the crud.

When I was planning on what to write during this post, I figured it would be nice to recap some of the things Atticus has accomplished over the past year, other than just staying out of the hospital.  So here goes.....one year ago today, Atticus couldn't even hold his head up on his own--even though he was almost 6 months old.  He had basically no muscles tone at all.  Today, I am proud to say that Atticus can most certainly hold his own head, and he can also roll all over the place, he can sit up unaided for indefinite periods of time, he can also pull up on his knees, and is even beginning to "inch-worm" crawl!!  He's also gotten leg braces during this year, and he's getting better at be able to tolerate standing for longer periods of time, though he still has to be aided in doing so.  He's figured out that if he stands, he can see more of the room, so he trying a little harder now that he sees what benefits it offers! :)

A year ago today, Atticus could reach out for things, but he couldn't grip anything, much less have any other sort of hand/eye coordination.  Today, Atticus can hold an object in each hand at the same time and bang them together, the can bring toys to his mouth to chew on, he can reach across his body to pick up an object in both directions, he can catch himself from falling/tipping over, he can pull an object closer to himself, and he can mimic "pat-a-cake", etc!  He's becoming more and more skilled at using his hands, and he's even learning how to turn the pages in a book, with a little help separating the pages.

A year ago today, we had no idea what sort of damage had been done to Atticus' brain due to the two brain bleeds.  We didn't know if he would continue to have seizures, if he would develop cerebral palsy, or what it would mean for his developmental capabilities.  I am so grateful to God for what I have seen Him do for Atticus in the past year.  Many things may still not show for years to come, but as of today, he can growl and squeal in various pitches to express his mood or "talk" (he still can't make "normal" baby sounds because his vocal chords still haven't healed completely yet), he has problem solving skills, he is becoming more aware of cause/effect, and can even use sign language to express "more", "pat-a-cake", "all done", "no" and "yes" with his head, and even invented one for "more pat-a-cake"! LOL!  He can also recognize the signs for "ball", "stop", "no", "book", "hello", and "bye-bye".  He's able to predict the next step in a sequence, such as when we put on his leg braces.  After putting on his sock, he'll lift his leg to put on the brace, and then lift the same leg again to put on his shoe before going to the next foot.  I'm also extremely grateful that God has kept Atticus from having any more seizures since the last bleed, and we've even been able to wean off the Keppra, so we're not even on anti-seizure meds anymore!

A year ago today, we also had recently discovered that Atticus had hearing loss, but we didn't know how severe it was until a few months later.  We discovered that he had moderate hearing loss in both ears, but that it would be manageable with hearing aids, for which, again, we were VERY thankful.  In this past year, Atticus has received hearing aids, and the last time we visited the audiologist, we discovered that he actually had more low frequency hearing than we originally thought!  Not only that, but because mommy has been a good girl and made sure that Atticus wore his hearing aids, he also has better than age appropriate sound awareness!  Yay!  Once Atticus received his hearing aids, his little world exploded!  It was then that he truly came out of his shell and began to be curious about the world around him.

Also, a year ago today, Atticus came home on constant O2, which was at a low rate of .5L.  Today, I am happy to say that Atticus only has to wear his cannula at night, and it's only on a rate of .25L!  I'm so thankful that his Pulmonary Hypertension has improved as well as it has.  I remember when he first came home, he had a rattling, raspy wheeze and cough that scared anyone who heard it.  Now, his lungs sound clear, though he still has a tendency to breathe hard and fast when he's excited or overexerts himself.  I'm also grateful that he's managed to get off his cannula during the day, because it was becoming quite the task to try to keep him untangled from his air tubes as he became more mobile!

Another huge milestone for me personally is the fact that Atticus has developed in his eating.  When Atticus first came home from the hospital, he threw up all the time!  I would literally have a basket a day of laundry just for Atticus of clothes, toys, and blankets.  If he got mad about something, he would throw up.  If he didn't want to do what the physical therapist was trying make him do, he would throw up on her.  If I didn't "burp" him 3 times a feeding, he would throw back up almost everything you put in him.  And no matter what, if you tried feeding him regular baby food, he was going to throw up.  I cannot even count the number of tears I have spent over thrown up/spilled formula.  But sometimes God works in mysterious ways.  Eventually one day, Atticus suddenly stopped throwing up.  It was like someone had just turned off a switch.  I think it was one of my happiest days since Atticus came home!  He had finally developed enough core muscles that he could push out extra gas with nice robust burps/farts, and he could "cry" without forcing everything out of his stomach!  As you can imagine, all that throwing up has cause him to have a BIG oral aversion.  After a particularly nasty virus that came with a sore throat, I was attempting to feed Atticus some baby food.  I was fully prepared for the usual round and round of trying to sneak it in his mouth, him grimacing, and eventually...you guessed it...throwing up from pitching a fit.  I decided to try some Stage 2 foods because, heck, they're really not that different from Stage 1.  It was Pumpkin & Pears...I'll never forget.  I snuck in the first bite, and he grimaced as he swallowed.  Then I snuck in a second bite, and he didn't grimace quite so much.  Then, as I reached to sneak the third bite, Atticus leaned forward, opened his mouth, and took the bite with no argument!!  *begin the hallelujah chorus, the clouds have parted, and I see a ray of light shining down!*  He ended up eating 1/2 the jar before the made the sign for "all done"--which was also a first--and refused to take another bite.  He was too tired.  I couldn't have been prouder!  I think the food felt good to his throat because it was so sore, and for the first time, he associated swallowing with something pleasurable!  Now, I'd love to say that was the turning point and now he's a champion feeder, but that hasn't happened...yet.  Some days he's up for the challenge more than others, but he's starting to fight me less and less.  So I'll count that as a victory!

Ok, this is turning into a really long post....I did warn you.  So I guess I'll wrap it up.  I want to end by saying how very thankful I am for everyone that called, visited, sent cards, gave to us in so many ways, that sent healing thoughts our way, and especially for those that prayed.  I could have never imagined when this journey began, how many lives Atticus would touch.  We literally had people praying for us all over the world.  Through friends and family telling their friends and families, we heard of people praying for us that were Jewish, Catholic, Methodist, Baptist, Church of Christ, Lutheran, etc in places like Georgia, South Carolina, North Carolina, New York, California, Mississippi, even London and Tuscany!  It has truly been a humbling experience.  We have always, and will always continue to trust that God has a plan for us and a plan for Atticus, no matter what difficulties we may face.  And of course, I'd ask that you keep checking in on us here from time to time, and as always, keep on prayin'!  :)

Awesome dinner with Atticus!!

I have some exciting news about Atticus!!  Well, really two exciting new developments!  First, I'm proud to say that Atticus has learned how to pull up on his knees!  He's been reaching for the TV remote on the coffee table, and taking everything off that stands in his way (including Robbie's laptop....oops!) to be able to reach it.  I'm so proud of him!  However, this also means that now I have to fight with that (expletive of choice) crib again to be able to lower his mattress!  The last time I had to do anything to it was when I assembled it almost a year ago when Atticus was getting ready to come home from the hospital for the first time.  The side rails kept falling over, the middle support kept bending when rails fell over, etc....and it always seemed to land on me!  I was literally black and blue by the time I finished putting that crib together.  I had cried, I had been beaten badly, and I hurt all over, but I finally put it together!!!  Oh well, maybe this will be the last time I'll have to mess with it, and Atticus can go straight to a toddler bed after this! ;)

Ok, second big development happened earlier this evening.  Atticus, of course, eats through his G-tube, but we still make attempts at feeding by mouth with Stage 1 or 2 baby foods.  Generally speaking, these sessions don't go well.  Most of the time, you give 1 or 2 spoonfuls, and he's had enough.  If you try to give him more than that, he'll throw himself into such a fit that he'll make himself throw up everywhere.  Not a pretty sight.  And totally not the type of behavior that I want Atticus to associate with eating, so we generally stop.  Every once in a great blue moon, I might be able to get about 1/3 of a jar down.  But generally, I have to trick him into opening his mouth, and he grimaces whenever he swallows.  So recently, I've been doing some research through a few other Heart Mamas' blogs that have older heart kids and have "been there, done that".  One of the tips that I picked up was to put some of the food on Atticus' tray and let him play in it while trying to feed him.  This hasn't been easy for me because I'm totally OCD, so I have to make sure that I strip him down to his pants, and that I'm able to give him a bath right away, but this has certainly helped A LOT!  If I let him play in the food for a few minutes before I attempt to feed him, then he's been getting to where he doesn't grimace so much when I put the food in his mouth.  So tonight, I decided to give him something new, and we had some Stage 2 Pumpkin with Pears while I ate my dinner.  I took a few bites of my food while he watched me, then I spooned him up a bite and he LOVED it!!!!  It was the first time ever he actually leaned forward towards the spoon and willingly opened his mouth to let me feed him!  And he only grimaced the first time or two, but then started eating almost like any other "normal" baby!!!  Hooray!!!  It's something so small, but I feel as great as someone who's finished their first marathon!  LOL!  One mini hurdle overcome in the road to getting off the G-tube!!  Thank you God!  I was also amazed that he actually ate about 1/2 the jar before he started getting tired and actually attempted to make the sign for "All Done"!  (It done by wiping your hands back and forth-like dusting crumbs off your fingers.....his was more of a clap/swipe two times, but I knew what he meant!!)  After he had signed "all done", he refused to take anymore bites. 

Dinner with Atticus has just blown my mind tonight!  It seems like after almost a year of trying to get him to eat by mouth, we've finally taken the first "real" step towards taking all our meals by mouth.  It has certainly given me some renewed hope exactly when I was beginning to feel like it would never happen!  Thank you Lord.  You always know exactly what I need.  :)  It has also been exciting this week to notice Atticus attempting to make some of the baby signs that the Speech therapist and I have been teaching him.  We decided to go ahead and begin with some Baby Sign Language because 1) of his hearing loss and 2) because his vocal chords still haven't healed completely.  It's like finally getting to talk to him, and knowing that he understands; that he's beginning to make the association between speech and its meaning.  Very cool stuff.  As always, I'll ask everyone to keep sending those well wishes, good thoughts, and keep on prayin'!!

Happy Valentine's Day!!

Happy Valentine's Day everyone!!  Welcome to the official launch of The Amazing Atticus blog!  I've transferred all his archives from his Caring Bridge page.  I've decided to start a blog because it allows me a little more freedom than the Caring Bridge site.  It'll also make it easier for you guys to comment on specific posts versus having to sign in the Guest Book.  I can also upload more photos, put links onto the page, etc.  Please continue to follow along with my amazing son as he continues to grow stronger and make new strides each day!

Heart Mama's Prayer

Hello everyone!  Well, Atticus is still doing well.  We had our first dentist visit yesterday (I know, I'm slack in this area--but there's only 1 dentist in Aiken that takes our insurance, and it's an ordeal to get into their office!)  Bad news is that it looks like we'll be going to yet another specialist--likely in Columbia.  Atticus is probably going to need dental work, though this dentist didn't go into specifics because he'll leave that up to the next doc.  It's really no surprise.  Atticus has some major staining/enamel issues with his teeth due to all the meds he's been on, plus all the throwing up that he's done due to the G-tube.  Still, not what I was looking forward to.

On another note....Feb 7th through Feb 14th is Congenital Heart Defect Awareness Week.  CHD affects 1 in 100 children.  In honor of this week, I'm going to share something with you.  I didn't write it, but it certainly applies.  I decided to title it: A Heart Mama's Prayer.


A Heart Mama's Prayer:
I pray that no other parent shall have to hear those words "Congenital Heart Defect".

I pray that no other parent shall have to sacrifice time with their "healthy" children because you can't be in 2 places at once.

I pray that no other parent has to see their child eat with a tube because just sucking a bottle makes them tired and sick.

I pray that no other parent has to make the decision to have their child's chest cracked open and heart stopped.

I pray that no other parent has to endure the torture of seeing their child cry his eyes out, yet not hear a sound.

I pray that no other parent shall have to get instructions on how to hold their child - this should be instinct.

I pray that no other parent has an empty crib waiting for it's owner to come home from the hospital, if at all.

I pray that no other child should have to go through all this pain, yet still lose their fight in the end.

I pray for awareness.

I pray for research.

I pray for a cure.

Hearing update!

I know, I know.  I'm giving another update already, aren't you proud of me?!  We went to the audiologist, Dr Little, on Tuesday, and we actually received some great news!  First, they were finally able to complete a full spectrum hearing assessment on Atticus because he's developed enough physically to give them the type of responses they needed.  Second, he actually has more low frequency hearing than they originally thought!  Yay! So she was able to adjust his hearing aids so that they were better tuned to his needs.  And third, Dr Little said that Atticus actually has BETTER than age appropriate sound awareness.  She also said that's because he must be wearing his hearing aids.  (*pat, pat*  Good Mommy!!) :)  So some very good news all in all!  Ok, that's it for now!  As always, keep on prayin'!

Looks like a medieval torture device.....

Hello again!  Time for another update on Atticus.  He's been doing great and getting stronger every day!  The leg braces are really helping him a lot.  They forced him to slow down long enough to really focus on what he's doing.  He's developed such good core muscles, that he hasn't even thrown up in over a week!!  (Thank you, Lord!!)  He's able to sit up all the time now, his right leg is getting stronger, still working on coordinating crawling (though he's doing a pretty good "army crawl" right now), and we finally got a "stander". 

The stander looks like some sort of medieval torture device.  Seriously.  It has adjustable pieces on it so we can configure it as Atticus gets taller, but it really looks awful! LOL!  It has a large wooden base with two little gripper strips where the feet are supposed to go.  Then moving up, it has an adjustable wooden slat that goes across the front of his shins/knees to help him stand.  Then moving up, it has and adjustable piece that goes across the lower/middle back with these two "arms" that go snuggly next to his hips to help hold him up straight.  Finally there is an adjustable piece that across his upper back, with two "arms" that go under his arm pits, and a strap that goes across his chest to hold him upright.  All these adjustable pieces are attached to two wooden slats perpendicular to the base with holes drill all along it.  It really is a sight.  He can't move his legs or trunk while he's in it, but we work on OT with his hands, or I distract him with pat-a-cake or NFL Network!  :)  He's worked himself up to about 5-7 minutes before he gets tired and mad.  Right now the goal is to get to 15 minutes.

In other areas, we got some great news from the Pulmonologist, Dr Brown.  First, let me explain that Atticus has become quite the little stinker when it comes to leaving on his nasal cannula.  He refuses to do so.  It doesn't matter what I do, he figures out a way to take them off.  The last time I tried taping them to his face, he just looked at me, narrowed his eyes, and "He-Man" ripped the cannula (tape and all!) off his face, then shook his head "no"!  LOL!  He does not like it at all!  He even broke his last cannula right before the pulmonlogy appointment.  So when we went to see Dr Brown on Tuesday, I asked if he had any tips or tricks for keeping the cannula on Atticus' face.  He said that other than tape, that was it.  He also said that since Atticus refused to wear them, and his sats were remaining about the same with and without the oxygen, he had no problem in letting Atticus go without the oxygen during the day while he was active, if I could slip it back on him while he was sleeping!!  Hooray!!!  Ding dong, the oxygen is almost gone!! Yay!  No more having to untangle him as he's trying to be mobile!  Nor more fighting to keep on his cannula.  Well, almost no fighting.  He still tries to sneak it off as he goes to sleep, but Mommy eventually wins, as I stay up later! ;)

Hmmm....what else?  Oh yes!  Atticus became offically 1 year post-Glenn as of January 12th!!!  It's so hard to believe that its been a year already since his last open heart surgery!  In mid-March, we'll be coming up on being home from the hospital for a whole year!!  Wow!  What a blessing!  Atticus has been through so much in his short 15 months of life, but he is getting stronger and stronger every day.  I'm so thankful for every moment I get to spend with him!  Thank you for continuing to follow our story.  And as always, Keep on prayin'!!