Longing

Ah, that is more about me than it is about Paxton. I have had such the urge to WRITE for so long. It is just so hard to do it. How do you other SNM (Special Needs Mommies) do it? For-reals?! I think about things all day, even record memos on my phone, jot things down on paper, but it is just so hard to even make my way in to this nice little seat I have here in front of my computer to get to share anything.  I have a lot of high hopes of sharing my thoughts, so many more experiences and updates about Paxton, improvements and successes for our whole family (little victories), writing about some of our big days, all the things I'm learning, blah blah blah!

I have had so many wonderful experiences lately. I feel like so many doors keep opening. It has literally been one thing after the next lately. If you have posted on my blog or reached out to me on FB or even sent me an email, please know that I am just (I don't like to use this phrase...what is a synonym for 'dying') to write you back! Seriously, I am so grateful and appreciate people reaching out so much. I am loving meeting new people who share similar experiences and stories and emotions. It is a great blessing to make those connections and strengthen each other. I just never get time on my computer! And if I sneak a read on my phone here or there, it's still too difficult to write back.  So seriously, when are you mommies searching blogs and writing your own? Don't you people sleep? :) I joke but that is the only time I can get blogging done, if I sacrifice my sleep. And, usually my body wins over my brain at this hour. But I couldn't wait any longer! I need to blog. Like I said, one big thing after the next. I have a big 'thing' tomorrow morning, which I should really go get sleep for, then I hope to start making more of an effort to be on here.  I don't assume it is for any of you. I know it is for me. But I do love to share the lessons I have learned and the solutions even physically we have come up with to help make life a little easier everyday with Paxton. So slowly but surely, simply and small, these posts will come!

Tonight I am so thankful for a couple wonderful weeks that we have had. The weather does so much for all of us. I look back at where we were a year ago and I just COUNT MY BLESSINGS, one by one.

Really...I literally used to take the video monitor with me to the bathroom!

Paxton could not tolerate the 'nose' (HME) well, so we were literally stuck in his bedroom all day.

I remember telling myself all winter that we just had to get through RSV season at home, just keep Paxton well enough to make it through the winter, then we could start to go outside again and feel the sunshine and some sanity. Well, his "triple crown" surgery on May 2, the very beginning of Summer!, knocked him out for what became a continual roller coaster of fevers and pneumonias until this February!!! That was HARD. Almost harder than last winter...waiting for summer to come, seeing people outside, and me still being stuck up there in that hot room doing the same things over and over again. :) Don't get me wrong, I love caring for and being with Paxton. I wouldn't trade any of what we have been through and I have learned for anything. That was not the issue...but anyone goes crazy staying in one room all day! Even the little man!

I used to have to schedule someone to be with my kids when I would take Paxton to the doctor, and yet another person with me to drive my car so I could sit in the back with Paxton, suctioning him and trying to calm him down (bc he hated the car seat).

Wow, we have come a long way.

Paxton not only tolerates the nose all day, whenever, wherever now, but he is even doing so well on his speaking valve (passy-muir valve). Thank heavens for this! He does not mind the car seat now and since last Fall I have not needed another adult in the car, we can go just fine on our own. I hardly have to pull over to suction him.

I don't have people in and out of my house all the time helping me with one thing or another. No, I actually have some privacy and independence. A lot of times now if there is more people here it is other kids playing with my boys, as it should be!

Pax has been so much healthier since he had his Nissen surgery in January. Yes, it was an awful route to get there, but it has certainly paid off. With him being so much more healthy and at home, he has been able to grow and progress much more. I am getting so used to packing everything up and going, whether it's downstairs, to a doctor, on a walk, etc. How nice that we are not only NOT bound to that room anymore, but also not bound to even just the house. We are venturing out more and more as Paxton is able. I have just come to accept that there is no EASY way to go about taking Paxton with us, even into my room while I shower, but it's worth it. Worth it to get him out of that room and for us all to feel a little bit more normal. It just takes time. Time to unplug and pack everything up, something I might have to do several times a day as he may go back up for a nap, then out again later.

We are still working on his sensitivity to the light (hurts his eyes because of the pressure from glaucoma); being outside is super hard on him in the daytime, but I do feel like it is better than last year as well. We have lots of baby sunglasses, hats, and even cushy goggles that we try to soften the burn for him! Some days are better than others, but I know he will get there eventually.

We love going on our family walks/bike rides in the evening now that the weather is nice. Oh it makes me so happy and feel so normal. It's amazing how feeling more and more normal, that one little word, makes you really feel so much better. We are not normal. But that's okay. We are adjusting and we are happy! Good things are happening. It is crazy, but I do truly feel like since Conference Paxton has been doing so well!! There must be many more strangers praying for him everywhere, a lucky and happy consequence/blessing for us. I am so happy for him and of course it makes myself happy as well! So thank you for your prayers. They are always helping. My 'prayer list' has grown quite a bit as well as I have learned and gained a testimony of how important it is, how much it truly does work and help when we pray for each other. I want to help anyone I know that is struggling or needs the extra prayer in anyway. I hope it does help!

So see, I'll end tonight where I started... How in the world do YOU busy mommies blog and is it really replacing your sleep? :) Loves and night to you all!