Sometimes I feel like we are overwhelmed with supplies, special shoes, suction machine, feeding machine, sleeping machine, percussion wand, special chairs, pillows to help prop, and I could go on… I feel like it overwhelms us, only at times, like when we are moving all of it, and I don’t know where it should go!
Then I step back and remember, Quinn, who is simply a sweet, wonderful, amazing, bright, naughty :), loving little girl, who I would do anything for, and in turn she is teaching and inspiring us all the time as well, so bring on the equipment, I’m ready to tackle anything to help her continue to improve and live life to her fullest!
Oh Poop!
No really, Poop, Poop, and Poop! Quinn pooped in the potty! She has been figuring out the potty thing, and doing pretty good, she is doing better for Chrissy then for me, but she is getting it figured out! They were doing the massage machine, and Quinn signed to go potty, and Chrissy asked her if they could wait and go afterwards, and Quinn said, “No, now!” and she went poop in the potty! Wow, I thank God for progress!
This week, Quinn is still breathing hard, on and off, and it is tending to be on, more often! That takes away from so much for her! It takes her out of class and to the nurse, it takes her out of sitting up straight, and we normally have to have her lay on her side, or tummy, to help her calm down, then she can’t see very well! It takes us away from doing lots of therapy, as we are busy situating her to breath well! I wish she would just get over her cold, and get back to her normal wonderful self, as she was there for a few days after we got out of the hospital, and when she has her sleeping machine on, she is super Quiet, but she has her noisy breathing a lot. I’ve been talking and reading more and more about a track. I have to say, I’ve fought and fought getting one, and honestly she has not needed one yet, but this breathing has been going on long enough to make me start looking into it. Honestly I’ve learned a lot, part of that being the misconceptions about it. She can still talk, and eat with it, thanks to a few folks who invented a little deal to go over it. They take a little work, but compared to the work we put into her breathing well during her rough days, it would be simple. We have to make sure it does not get infected, but yesterday I was told, it’s just another hole, kind of like her G button, and it will help her breath easy, so she can focus on other things, again, just like her G button that she gets fed through. That did help me put things into perspective. I hate to admit it, but I use to, way back in the day, wonder why folks go to so much trouble to help kids that have so many issues, but wow, have I learned, ignorance is prevalent, and I was one who did not know, so maybe it’s my mission with Quinn’s help, to educate, what a wonderful opportunity we have! Quinn has so much to offer, she is so crazy smart and full of life, and having a few extra “holes” to help her be more successful, really is not all that bad! Not that I want to rush into anything! As there are negatives, as we are not totally sure Chrissy would be able to watch her, (we are hoping and praying she could), because most of the time it’s a nurse, and she would have to have a nurse with her at school, 100% of the time, which is actually kind of weird, because her breathing would improve, but that extra hole, and rules make it so she would have a nurse, and there would be extra care involved in cleaning and maintenance. Then we would also qualify for a nurse at home if we choose to use that service, and sometimes it might be ok.
I think God works in amazing ways, because this last time we were at Children’s hospital, I was in the waiting room getting some water, and a little boy, who was about Quinn’s age, was running around the table by me, and his grandmother was with him, holding his oxygen tank, which was hooked up to his trake, and he was joyful and giggly, and talkative, and so was his grandma. I’m so thankful for seeing that!!! Quinn would most likely not even need oxygen, just that hole, I believe God had me go out of Quinn’s room and get water at that time, to start getting me ready to accept another possible change! Wow, accepting changes is hard! John and I both have a hard time accepting changes, yet, with God’s help continue to do so with all the grace he gives us, or we sure try hard to do so, and with Quinn’s amazing nature to guide us, how can we do anything but be grateful! But if that ends up happening, I sure hope we can simply have some calmness in our lives for a while, and give us all time to heal and enjoy life and each other!
What else has been going on this week? It is the week for parent teacher conferences, so I don’t see Quinn very much after all is said and done. With all the changes going on, it’s a bit hard on Quinn, then one more change, can set her off. That happened last night. After conferences, I went to my Better U meeting, ( http://www.1011now.com/betteru ) Then I worked out with Gina, and picked up healthy groceries, so got home close to 10:00. Well, I walked in and Quinn was awake, quiet, and in bed, then she heard me, and let me have it. She wined and fussed, and started breathing hard, and basically lost it. I’m quite sure she was letting me have it, as it is our usual routine to snuggle down at bedtime and talk and read, and relax for a bit. It’s actually really nice for both of us. I think with all the changes as of lately and me being gone, and it still being a new place, and her feeling the stress of the last few days, as Grandma Martha was in the hospital, and it was not a planned trip. She is tough and doing ok, but again, she was going to watch Quinn and we had talked about it, and so all those changes and stresses caught up with Quinn! So after she let me have it, she then promptly, within 2 minutes fell asleep. As if she was holding up all her frustrations and exhaustions, and after getting them out could calmly go to sleep! Then we woke up in the morning to have her wake up calm and breathing so well, and then she found out we were leaving and she lost it again, breathing and pouting and throwing a small fit. I can’t blame her at all, because there have been lots of changes, and routine is so important for her, and at the same time, I’m so happy and relieved to have all those emotions in her, and have her get them out! Sometimes I sure wish I could take a day off of work to cuddle her and spoil her, take a nice walk, read a book, relax and have us both take a nice long nap, but I will need to wait until the end of the month, for our fall break, but I’m already looking so forward to it. Instead Chrissy is watching her for the rest of the week, and giving her time to rest and recoup, as she loves school, but it wears her out and she ends up taking 4 or 5 hour naps, so I’m hoping a couple days to rest, will help her calm down and get back to her baseline, breathing, stressors and all.
I’m hoping to have most of our boxes organized and our old house will be cleaned out by the end of this weekend, and officially not be ours anymore by my next post (please pray that all goes well through the signing on the 14th), so I’m sure looking forward to some down time, snuggles, cooking healthy meals, and just having time to relax and breath! I have not had a lot lately and can tell I’m a bit stressed, and that is not good for Quinn to see, as it causes her to feel the same way.
So I am thankful for us having the opportunity to build, and the friends to help us move. I’m thankful for John being willing to work so hard, even though he ends up hurting himself, but his work ethic is so good. I’m thankful for Chrissy being willing to watch Quinn longer on conference nights, and Annette for helping out! I’m thankful for our new apartment that is working out ok, and they have already gotten handicap stalls out front of our apartment for John and Quinn. I’m thankful for Quinn being able to verbalize her frustrations, and me being able to calm her down! So I will continue to be grateful for as much as possible, but I’m sure looking forward to some uninterrupted Quinn time, lucky for me we have fall break at the end of the month, oh how I’m looking forward to that!
Phew, this one has gotten long!
Blessings!
Susan
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