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'!!

New leg braces

Well, Atticus got his new leg braces (AFOs) yesterday. He wasn't a happy camper about them at first. He really didn't like being strapped into them, but once that part was over, he decided that they weren't so bad anymore. Later, once we were back at Grandma's house and he could play in the floor, Atticus decided that banging them together in the air over his head was actually pretty fun!

I wasn't really sure what to expect when we went to pick them up, but they're not so "Forrest Gump" as I thought they would be. They're made of a thick, smooth plastic (almost like a beach sand bucket, but thicker), with a large strap around the top of the brace and another smaller strap across his foot. They stop just under his knees, and look like a "L" running down the back and sides of his leg and foot. The right one is yellow, the left one is green-which will help me keep them straight, and they have footballs on the straps. (Go Packers!) It's pretty funny because the father and son that own the business are actually Detroit Lions fans, so the son joked about making them blue and silver instead! LOL! (For those of you that are non-football fans, the Packers and Lions are division rivals, and they just beat us a few weeks back!)

We also had to bump Atticus up to an infant's size 5 shoe to be able to have enough room to fit his foot and the brace in the shoe. Thankfully, that's just about the time that I started saving Gideon's (my 3 yr old son) old shoes, so we had a pair handy! (Isn't it lovely how God ALWAYS provides?) With his shoes on and his clothes on, you'd never even know he had on the leg braces. He's in his ExerSaucer as I write this (watching his NFL network, of course!), so we're already putting them to work. I can't wait until my little man can crawl, stand, and eventually (drum roll please...) walk!! I'll try to be better with my updates so everyone can keep up with his progress. And as always, Keep on prayin'!