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'!

Long overdue update

Forgive me.  I know, I know.  It's been over 2 months since my last post.  So I'll make this one a long and detailed one so that I make sure that I catch up on all points about Atticus.  First, I hope you notice the new pictures!  We finally got some new family pictures done two days ago, and they couldn't have come out better!  Everyone looked great!  I love Atticus' curls, but they're starting to really get in the way of his nasal canula and hearing aids, so before they had to be cut; I wanted to make sure I got them in some pictures! :)

I can't believe Atticus is already 14 months old now!  He's gotten so big!  He's up to 24.5lbs and is about 32 inches long!  We've had some recent doctor visits, and added some new ones, so I'll try to go through them one by one and give you all the details.  First, for obvious reasons, is the cardiologist.  Thankfully, Atticus' heart function and oxygen saturations have been great, so no concerns there for the moment.  Dr Williams is still looking at that magical 30lbs mark as the milestone before beginning to talk about the Fontane.  Other than that, there's been no real changes in that department.

The pulmonology visits are fairly infrequent, because it's just going to take time for Atticus' lungs to heal completely, and there's no use just sitting in a doctor's office when there's nothing new to report.  We did manage to go from .5L down to .25L, so that's at least forward progress!

In neurology we've had some great news!  We're finally off Keppra and still seizure free!!  This has been one of my biggest reliefs.  We visited with Dr Kinsman at the end of October, and got off the Keppra by the end of November.  He was so excited to see Atticus!  He just kept repeating, "You're just such a little warrior, man!"  Then he would turn to the resident and explain about the "massive brain bleed" that Atticus had and how amazing it is that he has the cognitive function that he does.  Atticus is very alert, aware, he has problem-solving skills, he's developing his coordination, and you would never even know that he'd ever had 1 bleed, much less 2 bleeds!!  This is one area where the power of prayer becomes most obvious to me in Atticus' life.  Atticus "never should have made it" through those brain bleeds.  But with an army of prayers going up on his behalf, God chose to show His power and healed Atticus.  And I thank Him each and every day.

In audiology there isn't much to report other than how big an impact having hearing aids has made on Atticus.  Not only did they completely change his little world and expand it by leaps and bounds, but it completely changed him.  He is just so active!  He wants to explore everything.  As he's gaining mobility, he's getting into more and more--just like a typical baby! LOL!  He's also beginning to try to imitate sounds and tones.  He'll purse his lips like he's about to say "b" or "m", but of course, his vocal chords still aren't healed, so it's still pretty growly.  We're going back to Charleston tomorrow to visit with Dr Driscolo with ENT at MUSC.  I know his vocal chords have made some progress just by the range of pitches he's able to make now, but I also know that they must still have a long way to go yet.  I'm eager to hear what the Dr has to say tomorrow.

Hmmm....what else?  Atticus is doing well with all of his therapies.  For PT, he's finally starting to be able to sit up unaided for longer and longer periods of time, and he even ENJOYS playing in his ExerSaucer (which makes the PT very happy)!  I found out the secret to keeping him upright in the ExerSaucer for longer periods of time was to turn on NFL network and let it ride...Atticus LOVES to watch football!  It's the cutest thing.  I thought it was just because of the bright colors, but if I change it to cartoons, he becomes bored and uninterested.  The minute you switch it back to football, he's glued to the TV!  He growls at the players, get excited about plays and even pushes with his legs to bounce in the seat!  It's hilarious, but it's helping him make great progress!  He's also beginning to pull his knees and elbows up under himself when he's on his stomach, and trying to coordinate how to crawl!  It won't be long now until he's really mobile!  Good thing he's still tethered by his oxygen tube so I can keep up with him! :)  He already rolls around like a little tumbleweed and can push with his legs and spin on his back to swivel any direction he wants to go!

His OT and Speech therapies are also going well.  He's becoming more dexterous with his hands, and is able to catch himself better from falling over when sitting up.  Like I said earlier, he's beginning to try to imitate tones, and he loves to mimick behaviors.  If I clap, he claps.  I if bounce, he'll bounce, etc.  It's a great precurser to speech once those vocal chords decided to get back together! ;)  The Speech therapist is also working on some basic baby sign language to help his language skills develop.

All the developments with PT has also led us to add two new specialists to our resume.  We met with Dr Locke, an orthopedist, and the folks at Braces & Boots.  Atticus' right leg is significantly weaker than his left leg because of all the damage that happened during the Cath procedure when he was almost 1 month old.  Since he's getting closer to weight bearing, the PT thought it was time to finally see an orthopedist about his leg.  Dr Locke took an x-ray of Atticus' spine and hips, and examined his leg and came to several conclusions.  First, his spine is slightly curved because the left side is so much stronger and used more often, but if we can play catch up on the right side, then it should straighten out.  Second, his hips are straight and he didn't see any problems there.  (Thank you God!)  Third, there is a lot of muscle damage in the leg, but (once again, Thank God) there's no nerve damage because he's able to move the foot in the full range needed!  So Dr Locke prescribed bilateral AFOs (leg braces from the knee down to the foot), a reverse walker with wheels, and a prone stander.  (We'll see what those last two look like once they come in from the pharmacy!)

All this led us to the folks over at Braces & Boots, who actually make the AFOs.  We went yesterday for our first appointment.  It was pretty neat.  They put casts on both of his legs from the knee down and then cut them off.  They'll use these as molds to make the braces.  I picked out his colors, yellow and green-one of each, and his velcro straps will have little footballs on them! :)  I figure having the braces two different colors will help me keep them straight aobut which one goes on which leg!  We go back on December 20th to pick them up and learn how to use them, take care of them, etc.  Just in time for Christmas!

I think that catches us up on all the doctors, except for his regular pediatrician, Dr Goldberg, who couldn't be happier with him.  He still has his G-tube for feedings, and he still is real happy about eating regular food.  Although we're starting to have more good days than bad days with the G-tube, the constant throwing up still makes his resistant to having any food in his mouth.  The good news is that due to the Speech therapy, he's more and more receptive to chewing on teethers, toys, etc.  And, of course, fingers are still his favorite!  lol!

Atticus is such a little miracle.  He is so full of personality and I am so thankful for every day I have with him!  Thanks for continuing to check in on us, and please remember to sign the guestbook!  And as always, keep on prayin'!