Moving Forward

4 weeks post-op, The Pacman is healing well from all of his surgeries. The first week was rough. When Paxton first woke up he was in miserable, swollen, bloody shape (read: PAIN). It was awful to see him hurt so much and try to do anything to help him feel better. The poor little guy could just barely stand to be awake, so he spent most of his time sleeping, waking up just to writhe, squirm, and cry until the next pain med could be administered and kick in. When we came back home from the hospital 3 days later, it was so cute, I put Paxton down in his crib, and he gave as much of a smile and kick that he could before taking a 3 hour nap....He was happy to be back home!

About two weeks after all of his surgeries, just as Paxton was beginning to feel a little back to normal, he got aspiration pneumonia. We went from one two-week setback to another. The last two weeks have been constant fevering, trips to Drs., hospitals, and the ER. We prefer caring for Pax at home and, fortunately, have been able to keep him here, even though we have wondered at times if we did the right thing. His lungs have been a wrecking ground. I am hoping he is really on the mend now as he has been fever free the last two days. I miss the rolling, happy, energetic Pax we know! Last night we had a glimpse of that so I'm hoping for good things to come.

On a happier note, while I thought Paxton's oral aversion would be worse after having a prosthetic palate screwed into his mouth, ironically, his oral aversion has significantly decreased. It makes me wonder if it might have bothered him to even just open his mouth before, if even the air coming in was uncomfortable. A week ago his thumb finally made its way to his mouth, chewing, exploring, and smiling all the way. This was a happy moment! Something so normal and purposeful and good. Because of how often he began doing it, I started trying to give him a bottle and he did better than any other time we have tried in the past. I got a little reprimanding for doing that without a clearance from a doctor (excuse me for being an excited, normal mom, right?). So we had our swallow study this week (feeding him a bottle under video xray to see what happens with the fluid, and if his epiglottis can indeed close off his airway when he swallows so he doesn't aspirate). Luckily, they confirmed that, at least there, there was no sign of anything going down 'the wrong way'. So, approval granted! Mom can be a mom again and work on feeding! Can you believe it?! I feel like I am graduating right along with Paxton. Just this week we have gone from having Occupational and Vision therapists, to now adding in Feeding and Physical Therapists. Hallelujia. It feels so natural to see a bottle in his mouth and I have GREAT HOPES that it will become something comfortable and possible for him. 

He is also progressing in his physical strength and abilities. Only a special needs parent (no offense to the others :) knows the extreme JOY that comes from seeing your child get stronger everyday, especially when it is something you have to work at so hard just to do something so small and normal that we mostly take for granted. To wobble a little less when upright, to lift his head higher off the floor at tummy time, to roll to one side of his body, after working on these things for 6 MONTHS it is a happy thing to see some progress! Yippee Paxton! 

Although this month has been a rough one for Paxton, since my last DREARY post (sorry about that), I feel like Paxton has improved so much.  He is still 13 lbs. but loves rolling all over a room (in his own cute way), he is stronger in all ways, including that he does so much better on the "nose" (his filter that goes over his trach and hooks to his oxygen tank when we go out of his room, away from his three machines that produce oxygen and humidity), which has made things a world better. Although it is A LOT of work to pack up everything, if Paxton is feeling good, we can now bring him downstairs to roll on the floor there, have a lovely ride in his favorite swing, sit on mom and dad's lap for a meal (oh my goodness just this is something I LOVE being able to do...so simple), or try going outside with him. I say try because Paxton is so sensitive to light (because he is not used to the full outdoor light, and because his galucoma makes his eyes so much more sensitive). Most of the time, even in the shade with his wide-brimmed hat and baby sunglasses, he "shuts down"- just closes his eyes and turns in to me-  BUT, it is getting better. It is all GETTING BETTER. What a thrill and blessing. I do still have days that I just want to pretend life was normal and I could just go hop off with my kids and do whatever fun summer thing I wanted, like I used to, but...it's okay. That's not what life is and I'm still very grateful for the life and family I have. And just so grateful there is improvement. There are shining moments and tender mercies and many happinesses that come from what we are doing. And when I can let other things go, I know this is all the most important stuff right here. And my kids won't suffer too much if they go a year or two without all the activities and lessons that could be had. Before we know it Pax will be two and I can't wait to see how much things have changed. (Uh, ok, I hope some things do!) Right now just knowing he is almost one is crazy. And exciting. And so awesome.

This last Monday was a great day for us as a family. Although the holiday started rainy (surprise), the sun peeked out and we were feeling adventurous. While it sounds so boring, like why would this be our FIRST OUTTING ANYWHERE AS A FAMILY (not to a doctor, of course), it was important and meaningful to us. I can say that we have felt strongly that Paxton has had many angels supporting and comforting him so many times this past year, if not daily, and it's easy to think that if he were to have angels tending to him at times, that it would probably be some of our close relatives on the other side. What a special day it was for us to go to the gravesides of my grandparents and thank them for their probable presence this last year. They were (are) all amazing people and taught us so much about faith and love and family. What was even better was that Pax did SO WELL. Many times that we take him out of his room, or especially go in the car, he really struggles. But he was so peaceful, happy, and easy. (If you saw us you would laugh that I just said easy.) It was just so fun for us to be together as a family of five, going somewhere in the car just because we wanted to, and not worrying about the other half or having to hurry back or whatever. I think Pax really enjoyed being outside that day. :)

So good things. I'm very grateful. I feel like with the winter, a bit of my clouds have lifted and I'm feeling like more of the person I was before. It's just so great to add in some simple normalcies of life. I admire families so much who just keep moving forward and make things happen regardless of their circumstances. They make it look easy but we don't see how difficult it may be for them, or may have been in the beginning. I thought about this all one day as I was home alone with the three boys, trying to make dinner but I literally couldn't put Paxton down. I was holding him in one arm, wheeling the oxygen tank with the other arm, to and from the fridge, getting one item and walking it to the counter, and back and forth over and over. It was very frustrating and a little depressing. I thought about all those amazing people who lose their limbs and we see them all over YouTube- how much they have learned to do and now they are out motivating others and living these happy, full lives. I wondered...How did they get there? Were there days they just wanted to break down and quit, give up, at least cry a whole freaking lot? I think there had to have been. It just gave me strength to keep moving forward in this life of mine, and made me count my blessings in that moment. When I was about to break down and cry I had an ah-hah moment and literally thanked God for my arms and hands!! 'Cause I don't know how those people do what they do, but this, I can do this. (Gratefully I had a laugh that night when a friend came over and said, "Man, you know you've had a bad day when you are grateful you have arms!") but it's so true, I think we all have so many blessings to count! And I count the challenges as great blessings, too, because they make us care about the whys and the hows of this life and make us better people.

So we are doing great. I hope to post some pictures soon.