Growing up

Hey everyone!

It's been a few months since my last update, so I just wanted to check in with everyone with a quick update because O had a little "moment" today. Atticus has been doing pretty well. We had a good summer filled with swimming, trips to visit family, camping in tents, and of course, my nephew came down to visit.  Now that the new school year has started, Atticus is excited for his first Cub Scout meeting tomorrow!!  Can you believe he's old enough to be a Tiger Scout?!??!  I can hardly believe it. 

Ever since Atticus had his fenestration closed back in May, Atticus' retention seemes to improved greatly. He's made good strides in sitting still for longer periods at speech therapy, he's getting better at signing and learning go use his tablet, and things are starting to "click".

Today, God gave me yet another reminder of how far he's come. And maybe I'm getting sappy because it's almost his birthday, but I choked back tears.  I unlocked my car with the key fob, and he ran to get in the car for speech therapy.  I stopped for a few minutes in the doorway to talk to my oldest daughter, and I could hear him open the door to the van door.  I thought, "He's going for the wrong car. I'm going to have to drag him out of the van now."  But when I turned around to start herding him into the right car, I was floored by what I saw. He had indeed gone to right car, noticed his booster seat wasn't in there, knew it was in the van, retrieved the seat, closed the van, and was putting his chair into my car.  All. By. Himself.  I smiled like the Cheshire Cat, helped him buckle up, got in myself, slipped on my sunglasses, and let the sobs come where he couldn't see.  (I didn't want him to think he did anything wrong!)  I couldn't believe it.  My little guy isn't so little.  God has allowed him to continue to grow in ways that I couldn't imagine almost 7 years ago.  My heart overflows with gratitude at the things Atticus continues to show me he's capable of doing!  As always, keep on prayin'!

It finally happened!!

Hey everyone!

I just wanted to share a quick update. Life has been going pretty well around here. Most recently though, we had something awesome happen!  On May 9th, Atticus was able to have his fenestration closed!!  His new circuitry is finally complete!  His oxygen sats have been staying in the mid-90s.  I've never seen him look so pink! I can't believe this is the same kid that we used to be happy so long as they stayed above 75!  He handled the cath like the total rock star that he is. One quick night in the hospital for monitoring, and we were on our way home the next day.

As expected, he was kind of sore for a little while, but it didn't slow him down for long. He now has even more energy than before!  *insert happy but terrified "yeah!"*  We've mostly just been enjoying the warming weather with a few ventures to the pool already, and finishing off his 1st year of school. He's blossomed a little with his vocabulary. He's added several new signs recently, and refers to my phone as "Batman" because of my phone case, lol.  

All in all, life has been pretty good recently. Thank you for checking in on us, and I'll keep updating as things happen. Most importantly, keep on prayin'!

Our Appointment with Neuropsychology

Hello everyone!

So the big appointment with Neuropsychology was last Wednesday, April 6th. I was pretty nervous about the appointment, as I had no idea what to expect.  I was afraid of what they were going to tell me, and what it would mean for Atticus.  But as always, God sent me a sign to remind me that this too was all a part of His plan. 

I really liked the doctor we met with, Dr M. He was very patient, asked a lot of questions, and genuinely tried to get to know Atticus and his unique history.  While he and I spoke, his two students/assistants took Atticus to another room to begin the lengthy testing/assesment process.  We joined them a little while later to have the doctor conduct some more testing.

Atticus was true to form. He was everywhere, into everything, and doing as he pleased, lol.  Dr M and his assistants were patient, smiled and laughed a lot, and let Atticus be Atticus.  He was his usual mischievous self for them too. While in the other room with the assistants, he decided to drop one of his hearing aids into a locked cabinet through a small opening, lol!  We had to find someone with a key so we could retrieve it!  Overall, he participated fairly well, and when he decided he'd had enough of "performing like a trained monkey", he refused to perform a single task asked of him (even though they were tasks he had done before and was capable of doing) and would only sign "all done".

I'm still waiting for the official report to be mailed to me, but the brief overview with Dr M was really encouraging.  He said that Atticus has developmental delays (we already knew that bit), and that he would place Atticus at the level of a 4 yr old. Again, nothing really surprising. Then he told me the part that had been weighing on my mind since Atticus had the brain bleeds as a baby. He said that even though Atticus had developmental delays, he felt that Atticus was fully capable of learning and with the right therapy/intervention he could likely eventually "catch up".  I was so happy I could have cried!!  Thank you, Lord!!  Thank you, thank you, thank you!!!  Even with roughly 1/4 of his brain being damaged by the bleeds, my son is capable of learning. He is capable of becoming self sufficient. He is capable of leading a "normal" life.  It's news that I was afraid I would never hear.  And it's more proof that I serve the mighty God. That NO thing is impossible for my God. And that He is the Great Healer.  The feeling still overwhelms me with gratitude. 

We'll revisit and reassess Atticus with Dr M next year to see how Atticus has developed and grown.  In the meantime, Dr M gave me some contacts here locally to work with Atticus on learning to "slow down" and how to focus, so that he can learn and retain information better.  That's the next step for Atticus.

Next up on Atticus' calendar is an appt with the Cardiology team at UAB to assess him for his upcoming Cath procedure to close his fenestration.  That'll be next week, with a date for the Cath set for May 9, 2016.  Thank you for continuing to keep up with Atticus, for praying with us, thinking of us, and cheering us onward.  Please continue to pray for Atticus, his upcoming procedures, and for this new leg of his journey!  We'll update as we get new developments!

My "reminder" from God. I saw this on my FB News Feed the night before our appointment. 

This guy is getting so big!!

CHD Awareness and another seizure

Hello everyone!

Its been a while, and there's a lot to update. First, with the MRI and Neurology, we finally heard back from Dr H. She basically told us that there's a few things to be learned from the MRI. Atticus will always be at risk for seizures. (Boo, and that will be reiterated shortly...). She also said that due to the age of Atticus at the time the bleed happened, you can't look at his MRI the way you would an adult's.  Since his brain was still forming at the time, many of the damaged pathways were "rerouted". We can't look at it and say, "This part of his brain was damaged, so we can expect xyz to be affected."  Her recommendation is to have a full neuropsychological evaluation done on him (which would be repeated yearly), to try to understand exactly how Atticus' brain was affected and a get better idea of what to expect from that.  We have that appointment (with a new doc) set for April. I'll update once we have a chance to learn more.

Next on the list of updates, Atticus had another seizure today. This one was probably the worst one since the first one at the end of 2014.  He had crawled into my bed early this morning after the Hubbie had left for work.  At around 8:30AM, he coughed hard like he was going to throw up, so I scooped him up and ran him to the bathroom. He didn't throw up, but decided he wanted to sit on the toilet to go potty.  He walked out of the bathroom, and I decided to take a turn. Atticus walked into the living room, where my Mom was changing the baby's diaper, still half naked, holding his undies. My mom fussed at him to put his clothes on, but she noticed he seemed confused/dazed. She held his undies open for him to step into, but he couldn't pick his leg up more than a quarter inch off the ground. So she guided him into her lap, and he began to stiffen, straining his head to the right, and slightly twitching. He was having a seizure. Mom called to me, I hurried up in the bathroom and came running. I moved him from her lap to his side, and held his head while he seized. It lasted for over 5 minutes. He had drooled thick mucus all over my arm and the floor, so I cleaned off quickly after he had come to, and moved him into my bed to get him comfortable. Normally, Atticus will immediately be drained and pass right out for about 2-3 hrs.  Today, he would toss and turn, struggle to get comfortable, fall asleep for a little while, then wake up to puke thick mucus/bile, and go right back to sleep.  He slept for almost 6 hours. Every time he would puke, his heart would race upwards of 175bpm, and take several minutes to come back down.  During this time, I called Dr H's office, and they decided to up his dosage of Keppra from 3ml twice a day to 4ml/2x daily.  Since he had "returned to baseline", we didn't need to go to the hospital, unless we felt something else was wrong.  Thankfully, by this evening, he was back to watching TV and eating/drinking with no more nausea.  I'm still struggling to get him in bed for tonight, lol!

As you may know, this is CHD Awareness Week.  We made another submission to Mended Little Heart's #RockyourScar contest. I even managed to get all 4 kiddos in it!  Its crazy to think that just 4 days before today's seizure, we were all laughing and making this photo. Today reminded me of just how fragile Atticus really is, despite how tough he always seems. He's my little red headed fireball, but today that flame was burning low. He just looked pale and frail. He struggled to breathe at times. He fought. And he won again for today.  It reminded me why CHD Awareness is so important because there are so many children fighting each day.  There are some who are living life to its fullest, and those struggling to stay in the fight. There are those who are undiagnosed until its too late.  There are those who lose their battles. 1 in 100 children are born with a CHD.  1 in 5 of those children won't make it to their first birthday.  CHD research is vastly underfunded.  Its the number one killer of children in the US, yet receives a fraction of the research money it needs, pennies on the dollar compared to cancer research, adult heart research, etc. The more awareness we can raise, the better research and procedures that can be developed.  The better the research, the more lives that can be saved, and the fewer "unfortunate" incidents (like what happened with Atticus) will happen.

I know that through all the things that have happened on this journey with Atticus, my God has a plan.  This path has led me to understand a fraction of the love God must have for us.  This journey has taught me how to love everyone better because CHD doesn't discriminate. It affects the rich, the poor, black, white, asain, hispanic, etc.  It has shown me that many things are out of my control, but I can bring it all to Him in prayer, and I can spread awareness.  And so can you. Love the people around you. Hugs your babies a little tighter because you're never promised tomorrow with them. Forgive a little faster. And as always, keep on prayin'!

Our submission for 2016!

The long awaited MRI

Hello everyone!

Well, as the title suggests, Atticus had his MRI today.  And there's a lot to discuss.  I'm going to start with what I do know, and then go to what I don't.  So lets get started.

Because Atticus has HLHS, they decided to make him the first case of the day.  Which was great, and not so great.  That meant we had to check in at 6:30AM, which means I was up at 2:45AM after getting pretty much zero sleep.  But the good side was that he was sleepy all the way there, and while we were waiting, since he couldn't have anything to eat or drink.  It was about 8:00AM before the radiology folk came in to wheel him back.

The MRI took about 1.5-2 hours, everything went well, and Atticus ended up waking up from his sedation around 10:30AM.  Next we went to meet with the neurosurgery department to talk about the sphrinx in his spine.  That was some of the best news of all...

As it turns out, the fluid pocket in his spine (that small black oval that looks like the eye of a needle), is only about 4mm in size.  That means that it technically doesn't classify as a sphrinx (it would have to be 5mm).  The other good news is that the MRI revealed that there are no other common problems that are associated with this sort of thing, no tumors in the spine, no malformations, etc.  He said that its appears to be completely benign.  Which means that we don't have to go back for 3 years!!  Since its been about 3 years since the MRI that discovered the fluid pocket in the first place, he said that we can wait about 3 years until we follow up with another MRI.  Hooray!!  That is all GREAT news!  Thank you, God!

Now, the rest of this post is going to leave more questions than answers at the moment.  Its also going to revisit one of the most difficult times in my life, the second, MASSIVE brain bleed Atticus had when he was about 1.5 months old.  I had always heard our old neurologist, Dr K, talk about the second brain bleed, and really stress about how massive it was, and what a walking miracle Atticus was.  I never really understood why until today.  And its part of why its taken me so long to write this update today.  I had to wrap my head around it.  I'll warn you now that the next few images will probably shock you like it did me.  And, unfortunately, I really don't have any answers for what all this means for Atticus.  Since Neurosurgery ordered the MRI, we got to meet with them right away.  But we still have to wait to either meet with or have a phone conversation with Neurology.  So let me share what I do know.

I remember when the second brain bleed happened.  I remember the doctor telling me that it was covering his left Occipital lobe (aka the Vision Center), and that it covered part of the Thalamus (part of the Control Center for the brain, which was why the had the 4 days of near constant seizures).  I don't know if I was in shock, or just had forgotten my brain anatomy, but these locations aren't exactly next to each other in the brain.  The Occipital Lobe is near the back, and the Thalamus is near the center of the brain.  I always wondered how it covered both.

That large white area is where the bleed was.

I know.  I'll let you look and let that sink in for awhile.

Here is again from a different angle...

Dr K wasn't exaggerating when he said "massive brain bleed".

This is the "normal" right side of his brain...

This is the left...

And from another angle...

But just so I don't leave you with the wrong impression, there were a few less terrifying images, like this one...

Looking through all the images, it looks to me like a large pocket in the back left quarter, with an arm reaching down into the center of the brain, and a pocket "leaking through" to a much smaller pocket in the back of his brain.  Roughly a quarter of his brain.

As I look at these images, I feel a range of emotions flood me.  I'm angry at the doctors from the Pediatric Surgery team that didn't take the time to just give him some pain medicine before "debreeding" his leg.  I feel guilty and angry with myself for not somehow being able to prevent this.  (Don't worry.  The logical side of me counters with the knowledge that there was absolutely nothing I could have done.  Doesn't stop the feelings though.)  I feel curious, and I have already spent the last few hours researching the brain, what areas I can tell were affected, and what they control for the body, and about an hour on the phone with my sister, who has some knowledge of the brain from her work.  I feel anticipation and almost consuming desire to speak with Dr H in Neurology to get her expertise, knowledge, advise, and ask her the million questions running through my brain about how this effects everything from his seizures, to his learning abilities, to his behavior, etc.  And I also feel absolutely humbled.

That last one may seem a little strange, but I am overwhelmed at the power of my God.  Just from looking at these images, one would think that surely Atticus would be blind.  Its amazing that he lived through such an event.  Much less that he should have the cognitive functions and abilities that he does.  In several of the areas, you can see where the right side of the brain is slightly larger, and crossing over the "mid brain" line.  Possibly to compensate for the left side, and to reform pathways that has allowed him to be able to do all the things that he can.  I'm humbled to be witness of such a miracle, and to be called his mother.  My God is an awesome God.

I wish I had loads more to tell you.  I wish that I could answer the questions that are spinning through my head right now, but I can't.  That's about it.  For now, its a waiting game.  I'll try to be good and update as soon as we learn more.  But for now, as always, Keep on prayin'!

Atticus turned six!!

Its a day today that six years ago I didn't dare allow myself to dream about.  Its a day I worried might never come. But its here. Atticus turns six years old today!!!

We've had such a busy year since last October. Some things have been good developments, some not so great. This isn't going to be a long post because I plan to spend my time playing with Atticus instead of blogging. But I want to say "Thank you" to everyone that's been on this journey with us. Thank you for thinking of us. Thank you for praying with us, and thank you for putting up with my atrocious gaps between posts!  😉

I have so much to be thankful for today. God has blessed me with this little red headed fireball for six years. They've been anything but stress free, but they've also been filled with life lessons that only come by trial and experience. Thank you, God. Thank you for blessing me with another year with Atticus. Thank you for always having a plan for every new situation we encounter. Thank you. 

I'll update this post with pics from the day, but as always, just keep on prayin'!

A picture from each year!

He was so excited by his Oso plush!

A Special Agent Oso themed cake

Presents!

Happy Birthday!

A late night update

Hi folks.

Its late, I can't sleep, and I've been meaning to update again, so here we go...

A lot has happened since my last post. Atticus had another seizure in April, and another one in May. They both happened as he was sleeping for an afternoon nap. Both times he also vomited before having his seizure. They were both a little different from the first one in December in the fact that 1) he was napping-so they happened in the afternoon, 2) he was twiching, but most notably, he seemed to strain his head all the way to his right side, and his eyes were also straining over as far right as they could go, and 3) we didn't have to go to the hospital after either one. Though I did spend a lot of time on the phone with doctors. Basically, since these were really not new, as long as he returned to "base line", there was no need to come in to their office.

Both times were terrifying. To watch your child seize, to see them "not there", to hold them and pray they return to you, is by far one the most agonizing experiences I've ever had to go through. I'm thankful that my hubbie was there for 2 out of 3 episodes, and was home within minutes of the 3rd one. I'm thankful for bosses who understand me calling out of work at the last minute because I'm a total mess.  I'm thankful to God to have Atticus "returned" to me each time, and hearing my pleas.  And I'm thankful that its been almost 4 months since his last one.

*blows nose. wipes eyes. clears throat*

We've met with his new Neurologist, Dr H, and we've followed up with an EEG. The EEG confirmed brain wave patterns consistant of someone with a seizure disorder, but they didn't record any during the session. So next we're still trying to schedule an MRI to get a look at his brain/spine. Neurosurgery actually put the order in because of the spherinx in his spinal column, but both groups are looking forward to the results.  We're just waiting to hear back from cardiology to see if the stint that was placed in his left pulmonary artery is MRI compatible. 

Oh yeah...I haven't told you about the stint placement yet!  We were finally scheduled to have Atticus' fenestration closed back on May 4th, 2015. (The fenestration is like a flow valve/pressure release left open after his Fontan to help relieve lung pressure as his body adjusted to his new circulation.)  The day arrives, we report bright and early to the new hospital, and I'm a total ball of nerves because these doctors (as awesome as they were) weren't there for any of his previous surgeries, struggles, recoveries, etc. They could read his medical record, but that doesn't begin to convey the complex creature that is Atticus.  They rolled Atticus back to the Cath Lab, and we decided to go get something to eat because we missed breakfast. 

While we were eating, Robbie and I just felt a total sense of dread. We knew it was something to do with Atticus. We held hands, prayed for God to protect Atticus, and scarfed our food down and walked back the block to the hospital.  We browsed in the gift shop to see if there was anything we thought Atticus might like, when I heard our names being paged over the intercom.  We rushed back upstairs to the waiting room, and found the Dr who was supposed to be in the Cath Lab with our son.  Then he dropped a big surprise on us.

They were unable to close Atticus' fenestration because his lung pressures were too high when they tried. His new circulation is reliant on his lung pressure being just right. Upon closer inspection, they noticed that the pressure in one lung was higher than the other. That's when they noticed that Atticus had an "elongated pinch" in his left pulmonary artery. It started at 9mm, went to 6mm, and opened back out into the lung at 8mm.  Instead of closing his fenestration, they now wanted to place a stint in his left PA to fix the narrowing.  When he began describing placing a stint on a ballon, and running it up the catheter, etc, I just wanted to puke eveywhere. I began having flashbacks of "The Cath" that went terribly wrong when he was a baby. Robbie was just as green.  I wanted to scream, "NOOOOOOO!!!!!", but I was pretty sure I would have been granted crazy lady status by everyone except for my husband.  The Dr let us know that we didn't have to fix it right away, but by before he was a teenager, it would have to be addressed.  We decided that since he was already sedated and prepped, it was better to address it then, and revisit closing his fenestration in another year.  Thankfully, everything went smoothly, and Atticus was out if the hospital after one night. 

The stint placement has led to our newest journey, with Lovenox and Coumadin (both of which I despise).  Because of the stint placement/location, Atticus had to go on Coumadin (an anticoagulant aka the same stuff that's in mouse posion!) for 6 months to a year to avoid the formation of any blood clots (which would be fatal) as the placement site heals. He has to maintain a certain level in his blood for it to be "therapeutic", so until that level was reached, he also had to receive Lovenox injections twice a day, and weekly blood draws to check his levels.  I thought it was terrible to have to give myself insulin injections during my last pregnancy, but nothing compares to having to chase down and tackle a 5 year old so that I could give him shots 2x a day. He hated them. He would fight, scratch, twist, and try to get away. He would sign "all done" as soon he saw the needle coming. It inevitably left bruises wherever I stuck him because of the Coumadin. Those were a miserable couple of weeks. He's still on Coumadin, but luckily the Lovenox shots are done. And since his levels have been steady, we've been able to go a month before our next blood draw!  Whoo hoo!  Atticus is such a trooper though. He climbs in the chair, sticks his arm out, and even "helps" place the tube on the butterfly needle.  He found an orange balloon in our playroom the other day, and pretended it was a tourniquet, and used an oversized pencil as the syringe. *sigh*.  Its heart warming and gut wrenching at the same time.  He handles it so well, and charms all the new folks he meets, but it stinks that that's his normal.  But I see it as just another of the many ways he amazes me.  

On the more upbeat side, we had an Orthopedic visit and are cleared for 2 whole years before we have to go back!! Hallelujah!!  Thank you, God!!  His new doc thinks we might have to eventually stunt his "good" leg to keep it from becoming a severe length differencebetween his legs, but it would be many years before we would have to consider such an option, and well, in the meantime, I'm just going to pray the "bad" leg can continue to "catch up", and maybe we won't have to cross that bridge.  And I'm just going to enjoy one less doctor visit for a while. 

Other than that, Atticus has continued to be his rowdy, mischievous, little red-headed self. He runs, jumps, climbs, rolls around, chases the dog, beats up on his siblings--especially the toddler, and enjoys watching Special Agent Oso, Mickey Mouse, and Lilo and Stitch.  He's continuing in speech therapy, is getting better at stringing multiple signs together, and is even getting better as using the tablet to "talk".  But he stll HATES wearing his hearing aids. I usually get an hour at a time, tops. Sometimes he won't let me put them in at all. But I keep trying, and some days are better than others. Occasionally, he even asks me for them!  So we keep working on keeping them in longer/more frequently.

Atticus also started kindergarten this year, but I'll save that update for next time. It's late, or early, and I'm finally sleepy. So, good night, thanks for checking in on us, and as always, keep on prayin'!

A visit with his Great-Grandma

Worn out after a long day of fun for his big sister's birthday!

Trying on Daddy's boots, lol!