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'! :)
