Happy Fall (Nov. 13 post)

I know, I know. I am the worst at getting on here. I guess I'm going for the quarterly catch-ups now. :)

Pax is doing great. We are STILL battling all the concurrent fevers and infections, literally one right after another since May 17. BUT, we are also still seeing progression and development, which is great. I have had such joy the last few weeks in seeing Paxton really respond to certain therapies that we have worked on since coming home. It's great to see him coming along, even if it is delayed (but we expected that). About two weeks ago Paxton finally figured out how to roll all the way over, to both sides, and back. He has been rolling forever, but now, for the most part, he can get that last arm up and out from under his belly. Yippee! He is getting super strong at tummy time, and can balance himself so much better sitting up in my arms. It's delightful.  He also is still doing fabulous on the HME/nose, meaning we can bring him downstairs on his portable equipment any time we want, and he doesn't struggle as much in the car anymore. It's liberating to be able to take him to dr's apppointments on my own (although I enjoyed the visits with Grami and neighbors who would help us in the past). I may have to pull over once or twice to suction but usually that's about it. Yay!

I feel like we are much more really into a rythmn now and I can see all of us doing better. That first year really is survival, and I would never wish to go back to any moment of it! Pax, although still immuno-compromised with so many dr visits, surgeries on the horizon, etc. etc, is so much more stable. I am getting to the point where I can leave him, even rolling around on the floor for a minute while I run to grab his milk or throw some laundry in. And, I don't always feel like I have to be staring at the monitor every second. I can handle evenings on my own now with the three boys, even when Dave is out of town and I am trying to juggle them at dinner and bedtime. I'm not saying it's easy, but it feels good to be capable and to have our home to ourselves again, even if it is stressful and not as picture-perfect as I would like it to be.  So much of it is attributed to what a sweetheart little Paxton is. Unless he is really hurting or needing something, he is an angel and will be content playing on the floor or in a swing while I help the other boys or get them to bed. He also - finally! - at 16 months, is starting to get into a wee bit of a schedule. I can usually rely on noon as naptime now, with a small one around dinner-time. This helps me a lot in scheduling therapies, knowing when I can count on a shower, etc. Obviously every day is not the same, but it's definitely more regular for sure.

The contented feeling has remained. I feel such a joy in caring for my little Pacman and the rest of our clan here at home. And while sometimes I do feel the world outside may be going on without me, I am also feeling that this is my world. These boys are the cutest things to me and growing up all too fast. I'm getting to the ages with Camden and Mackay that I can really feel that some of what we are doing is okay! That we are teaching them, and despite their best efforts to make us think otherwise, they are listening! And getting it! They are gems to their brother Pax, and continue to learn how to help him with more and more things, especially how to play with and hold him. Paxton lights up when they are around and they always seem to know just what he needs. One day Pax's O2 tank was nearing empty and Camden came running to me saying, "Mom, Paxton's tank is on red and that reads BAD!" So cute for a little boy who is learning to read and while there were no words to read, he certainly was right that that meant bad! 'KK' loves to help push every syringe for Paxton, carry his chords when we go from one place to another, and they both love to make him laugh.

Excitedly, I heard Paxton vocalize for the first time about 2 days ago. Although he used to do great on the speaking valve, like on for 30 min at a time when he first started out, interestingly enough, now he is having a more difficult time with it. :( (coughing a lot!!!) But finally, I heard these cute little high-pitched sounds for the first time and loved it! He heard them too and now is trying to make those sounds even when he is on the nose. So fun!

I had a super uber proud mommy moment. The leaves were going. I knew it. I kept wanting to get my traditional annual Fall pictures of the boys but it seemed Davey Dew was always gone! Well finally, on a day that wasn't even particularly good, I packed everything up, got all three boys ready, hauled out the bumbo and my photo chair, my camera bag, and lastly the boys and Pax's equipment all loaded up in the double stroller, and headed to...the back yard! :) We got some really fun pictures that day and their interactions were so cute and genuine with each other. All that and it was all on my own! (Never on my own...God is always helping me.) Physically alone though. Phew! What an effort it was but I felt like it paid off and I got enough to satisfy my urge before the last of the leaves fell. I didn't quite get the smiles I wanted from Pax, but once he was just lying down in the grass and looking up at the leaves, well, then he was quite happy!

So Happy Fall to you all... that "Most special time of the year" is just around the bend!

It was a good day. Yay for updating the photo frames. Happy Mommy. :)