Return

(Too bad I didn't post this when I actually wrote it, Feb. 8th! A more updated post to follow soon.)

Ahh to resign from my three month blogging sabbattical. To be honest, I was not sure if I would be able to blog again. Life has taken on quite a new schedule, none of which lends too freely to blogging. Or any extra curricular activity for that matter, for the time being. Really, that is what has kept me going through most of this- knowing that there are many times and seasons in life, and right now, this season is wholly devoted to very simple things. Caring for Paxton. Caring for my boys. Caring for my marriage. Caring for my home - not so much. :) All get the front seat when they can and sometimes the back seat is the best I can do. But we are here, carrying on. How to organize the madness of my thoughts? The lessons learned, difficulties of the adjustment, blessings abounding, pleas for ____, a myriad of things...

First I should share about Paxton.

Paxton has been uber blessed being home. We both love being here.  Going back to the hospital now is a very hard thing for both of us. The sterile, cold environment...where suddenly mom is the expert and has to tell the nurses what to do and when to do them is...weird. With that said, it's not like I go anywhere. I have a very hard time not being with Paxton when he is in the hospital. I feel like he knows and is comforted by his mom, and leaving him alone in this boring, lonely place would be such a blow to his normal little world. Why give him one more thing to struggle with in a not so happy place? So I stay with him as much as possible.

Paxton has been back to the hospital for many specialty checkups and several sick checks...the first of which, after being home for a month, we realized his lungs were deflated. He was admitted for a week and put back on a ventilator at nights. This felt like a step backwards, but they had no question it would be better for him. It is more work: more to hook up at night, more alarms, etc., but at the same time, it does help him in many ways. It helps his lungs, his apnea, and his growth, so he is not exerting so much energy and calories to keep breathing, allowing his body to really restore itself at night. He is growing. He is now at 7 months, 11.5 lbs.!

Paxton has done some great things that have surprised me. He thankfully has his Daddy's coordination. He can reach and grab a toy hanging from his mobile after carefully watching it advance to the right position. He bats at toys and reaches up and holds the books I read to him. He also rolls to his right side from his back freely, back and forth, with huge grins after each roll. His head control has gotten better but his upper body strength is still lacking a bit. I get a thrill out of noticing what he intentionally does and does not do. I used to think all of his movements were completely erratic, and maybe they were, but now I know they are very intentional. Paxton will move his arms or legs to feel something as much as he wants, and can now keep them perfectly still if there is something he does not want any more of as well. He has a hard time concentrating, or looking at, anything when he is sitting up; he is much more used to examining things from a back-lying perspective. So we always have a lot to work on when we can. However, worrying about his reflux every hour of the day really puts a damper on what we can do: work, play, and therapy-wise. Paxton would like to be doing more, sitting up or laying flat more (he is beginning to get a little bored), but it's hard having to keep him at a 40 degree angle so much of the time to prevent reflux. (And it still happens much of the time regardless.) It is not safe (risk of aspiration) and not fun for him to be suctioned -nose and trach- after.

Paxton loves hearing a familiar voice and any sounds that his two older brothers make. Likewise how much his older brothers love to get down and play with him, kiss him on his forehead, hold his little hands, and play action figures over his head. They like to hold him at times and always want to come see if Paxton is awake and wanting to be part of their play. I've been so impressed at their care and sensitivity to him. They have never tried to pull anything they shouldn't, and they understand way too much about things that have never been said. They know that their baby brother always needs someone with him. Camden will say, "Mom, I'll stay here and take care of Paxton, you just go find ____ for me." Well I have actually said, "Okay, Camden," and while watching on the video monitor will find that sweet little 4 year old, rubbing his baby brother's head saying, "It's okay, Paxton, I got 'cha."

One day the boys came home from church with deliciously large gumballs, and Camden was so excited to show me and Paxton. It was fascinating to watch Camden's wheels turning as he looked at the gumball, then Paxton, then me, and asked, while putting the gumball to Paxton's tummy, "Mom, can this fit in Paxton's tube?" So cute! I loved that he wanted to share it with him and knew exactly where it would go. Camden wants to help me mix Paxton's milk and do anything else he can. The boys love to help me bathe him. Camden will put the shampoo on his head and massage his scalp while Mackay is famous for rubbing the washcloth all over him. Mackay gets mad at me every time I suction Paxton because Paxton doesn't like it. He will say each word with the maddest face and stern pointing finger, "No, no, Mommy, be nice a Paxton. No owies."

At the beginning of January, Paxton spiked a 105 degree fever and his heart rate got up to 187 bpm. I double dosed his anti-seizure med and we headed to Primary's in the middle of the night. At first they supposed pneumonia, then a viral infection, then by day three we were down to thinking it was simply a reaction to the flu shot. Thankfully. But from that visit we learned he was anemic and needed iron supplements three times a day. So things always work out as they should.

Paxton's eye exams have been great and his pressures are remaining low. Hallelujia!

Other than that, I really feel Paxton's immunity is growing. We have had head colds and so has he, and luckily nothing has ever settled in his chest so much that it didn't go away on its own. This has been a huge blessing to us and his continued growth. But every time a new cold emerges, we get very worried and hope it will go away like the last one. Such is the case right now and last weekend we did labs, xray, and RSV swab, but so far so good.

Nursing from our insurance ended, but, without saying exactly what happened (who knows what psychos are out there), let's just say God's hand has been working His way in our circumstances and amazingly, the very same week, we were able to be part of a program that will allow Paxton to have continued nursing at night. It goes without saying what a miracle and how happy I am, right?!!! But really, it is pretty amazing if you knew all of the details. It is nothing but a huge TENDER MERCY and blessing from our Heavenly Father and we are SO GRATEFUL! And we finally have consistent nurses who we love and trust and they love Paxton. What a blessing! Oh to be able to sleep at night! (Well I do have two other toddlers but you know what I mean.)  :)  It makes a huge difference from the nights I have to stay up on my own after a full day, and go again the next! We are VERY grateful!

People ask me how I do this all the time. How I'm doing. Two different answers. How we do this - The answer is simple, although doing it is not. The Lord/Gospel/Our beliefs, and Others' help. How we are actually doing? Loaded. Most of the time I can honestly say pretty good. But I have felt the urge lately to try to do more on my own, have less help daily, and while it is good for our family to learn how to do so, of course it is MUCH more difficult, trying, and tiring. It's hard on our two little boys, who have a hard time not doing more things and in more places ALL DAY LONG. It's hard on me going constantly one thing to the next with the kids but also being essentially stuck in the same place all day everyday.  I want so badly to be able to do it all by myself, but it is very hard to do. My back literally aches about half way through the day, and I feel like I need some advil every night before bed. I feel like it's a constant question running through my head how to do all of this, more and more on my own everyday. I want to not only be Paxton's full-time Mom, but Camden and Mackay's, too. How to do both full-time right now remains a mystery. And it's not an easy idea to hire a nurse for Paxton or help for the boys. I struggle with essentially every idea we have thought of. I know it will continue to come, just as blending other things has, but I don't think it will be a quick solution.

This last week we had an interesting experience. I was home with the three boys, and Dave had just taken off on a plane and a very huge storm was brewing outside. He had said he had a pit in his stomach all day to leave, and it always makes you wonder, does that mean something is going to go wrong...to him, to Paxton? Moments after his phone was turned off, the lights in Paxton's room flickered. It was so quick, I'm sure anyone else would not have thought a thing about it. But a moment later I had a feeling, 'The lights are going to go off... The POWER is going to go off!' I ran downstairs to get candles and flashlights, batteries, and matches. I felt myself rushing around on adrenaline as I panicked, what else do we need if the power goes out?! Of course we have a generator but had not set it up yet, and you never think it will all happen just the moment your husband has boarded a plane. Then I laughed at and got mad at myself for creating all of this drama, saying to myself, "Shannon, why are you making this such a big deal? The lights are probably not going to go out and then you will have stressed out and made it an anxious night for nothing!" Literally 3 minutes later, it went out. The whole house. (IE: ALL OF PAXTON'S EQUIPMENT, monitors, etc.) I pulled the boys off the counter and ran upstairs saying, "OK guys come on here we go, we have to get Paxton on his tank!" I was rushing, my heart was pounding, and I was grateful I knew how many clicks it took to turn on Paxton's oxygen tank in the dark. Camden came into the room and asked, "Mommy, is Paxton going to die?" I said, "No, Camden, of course not, we just need to take good care of him together, okay?" We got candles and flashlights out, Mackay was crying and scared, and even when we kneeled to say a prayer Mackay was shining the lights out in the hallway crying, "Bad guy, Mommy, Bad guy." I knew Paxton would be okay on the O2 tank, even though he doesn't like it much. He was crying already but if I needed to I could give him a med to cope for the night. I called the power company and the outage was expected to last at least 5 hours. I knew we could get by on tanks that long, but what about the suction machine, and pulse oximeter monitor? The batteries lasts 2 hours. Another scare...my cell phone battery was in the red! Lucky for me, I have, as I have said before, amazing family and neighbors. A brother in law brought a generator, a sister in law came to help with the kids, and my trained neighbor came to help at Paxton's side while we calmed and situated the kids. Another neighbor came to help. I felt completely at peace once we got the generator going and I couldn't really believe Paxton could be on all of his equipment during the outage, and there was nothing really more to worry about at all. My boys were having fun with their cousins and playing with flashlights. I'm so grateful for concerned and caring people in my life who help me not to go it alone in my toughest moments. I really do fear now where I would be mentally without them! Sometimes I really think it would be too much.

We are doing as Elder Uchtdorf advised, slowing down and proceeding through this turbulent time at a much slower speed. There is not much choice in the matter either! But there is a lot of doing without right now, and as hard as some of those things are to lose (regular freedoms and to do's), it really is okay. There are other things that are not okay to lose, and we have to work really hard to make them happen, to protect our relationships, with each other and the Lord. Is it the same struggle of balance as it was before? In principle, yes; in all actuality, not at all. It is much more intense. More constantly difficult. And I know we are doing our best. But even then the bow can't always be tight, and there are moments I simply want to escape.  Yes, it is absolutely a huge blessing to have Paxton home and a part of our lives, and WE LOVE HIM WITH ALL OF OUR HEARTS, but it's still hard to deal with how things are day to day, everyday. I wish everyday that Paxton could be weaned from oxygen. It would make such a huge difference in the equipment we would have to carry everywhere, the worry that goes with every minute, and the constant monitoring, both of machines and humans! It would make him so much more portable and life a little more normal for our family. I feel like we are always learning more on the horizon, surgeries or therapies, and it's not always comforting. The long road is starting to set in and I suppose it has affected my cheery temperament just a bit. But I do know that I can be thankful for so many blessings. So many caring people in our lives who have brought meals, babysat my boys, driven me and Paxton to doctors, cleaned our home, shoveled our walks, called, and visited. I would not be surprised if when I go to the other side Someone says to me, "You know you were the most blessed trach mom ever, right?" I don't think many others have the outpouring of service that we have had. We have amazing family, neighbors, and friends who have tried to be there in every way physically and emotionally possible. And we are so grateful. I really think I would have jumped off a cliff by now. Because just now, as I try to do more on my own, I definitely feel more of the weight. Of labor and loneliness. And I think of other moms and families with special needs children who live away from family, don't have such an aware or caring community, and feel like they have been given this huge challenge to deal with all on their own and I just don't know how they do it. I hope they have the Lord in their lives because ultimately He is the only one who can get us all through any of our difficult trials, our refiner's fires- some once given that will remain for most, if not all, of our lives. I pray everyday for myself, my family, and others with these trials that we can do it. That we will become what He knows we can be and that we can be what we need to for each other. If you know anyone, besides me, that struggles with a special needs child or family member, please, please, go help them! Ask what you can do. Visit. Call them when you can. I hope you would feel as blessed as they would from your love.

And today, just enjoy running an errand, whenever and wherever you want. Driving by yourself in the car without another adult or without it being on your way to the hospital. Playing with your kids in the basement or taking them outside to feel the warmer weather and light on their face. There are so many things I wish we could do and can't wait for the time we will be able to do them more again. With that all said, I count my many blessings everyday that Paxton is here and we have such an amazing support group. Thank you for being a part of it!