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!