OT

I love Rylee's Occupational Therapist. She really is great. Having someone come into my home 1-2 days a week is not something I enjoy. I always worry about being "sized-up." It's not like I'm a dirty person, but sometimes I feel like I cannot keep this place clean. I am constantly picking things up just to get them right back out. I tell myself that things would be different if we had a bigger place, but I know that I would just end up with more stuff! Anyway, today Rylee's OT told me that I'm one of the best moms that she's ever had. She's been doing in-home therapy for 25 years, so that was a huge compliment. It's nice to know that some people can really see the dedication that it takes to have a baby like Rylee. Most people look at her & think, "She looks normal." And she is "normal" but by who's standards? Rylee requires so much more than most babies. Every baby needs love & attention, but not every baby needs daily therapy & evaluation. I am constantly observing how & when she does things. I am constantly working with her to push her. Sometimes I wish that I could just let her do her own thing, but I have seen her go from having a severe head tilt & extreme lack of mobility to a squirmy, wriggly baby. It really nice to see that all of the time that I have spent stretching & moving & making her go a "little bit farther has made such a difference. So, I am very thankful for programs like First Steps & an OT like Donna.

I'm excited!

So I got Rylee's invite to the annual NICU/3N Reunion! I'm super excited!!! Not only is it on a Saturday that by the grace of God I dont already have something scheduled, but it's also at the zoo. I've been debating on purchasing a zoo membership this year, so I will be able to see if Rylee's reaction to the zoo. She is going to get her very 1st reunion t-shirt along with Josh & I. It's exciting stuff! I can't wait until the doctors & nurses see her. I'm especially excited to see a couple of nurses that were very special to me. All the nurses were good, but there were a couple that I connected with, & I really missed seeing them as we were transferred from nursery to nursery. I'm kinda excited to see the doctors too. Dr Deweiss was probably my fav, so I can't wait for him to see what Rylee had accomplished. I remember him telling me, during morning rounds, that he has planned to have Rylee completely off the Nitric by the end of the day. And then he looked at me & said, "They all think I'm crazy, but I know what this little girl can do. She's tough. A fighter. I know that she has it in her, & I'm going to push her." That's the moment that I knew I would be bringing Rylee home. I never told anyone that. I just kept asking for prayer & praying myself, but Dr. Deweiss gave me something that no other doctor had given me, hope. See, the doctors in the  Kosair NICU are surrounded by death & disappointment, & even though they are the best in their fields, the fact remains that the cannot save every baby. There were times that I went into visit Rylee (I spent 12-16hrs a day for 26 days in the NICU) & the bed that used to be occupied was empty. Those were somber moments. Sometimes I worked up the courage to ask the nurses where the baby was, & sometimes their response was a transfer...and sometimes it wasn't. Well, now that I'm completely depressed, the point of that rabbit trial was to make the point that most doctors know that they cant give parents a false sense of hope. Facts & figures are usually the only answers that they give, but, that day, Dr Dewiess gave me more that just the facts & I knew that was an answer to my prayers.

Speaking of prayers, I've been reading this new devotional based on the Love Dare. It's a couples devo & I really like it! There are 365 short devotions that are intended to teach how to give & receive love. There are some corresponding quotes, passages & challenges. Josh seems to like it too, so for that it gets an A+ in my book!

This past week Rylee got a runny nose & dry cough. I had to take her (smiling) to the doctor. She has VERY dry skin, & sometimes it rashes. When I took her to the doctor, they expressed concern for Strep, based on her cough & bright red rash. It turns out that my baby just has allergies, we think. I will be looking into testing very soon. My title is "I'm excited" & it's bc, despite a slight sleep regression during the beginning of her "feel bads" Rylee is back on track! I'm excited to know that even though there is an occasional hiccup in her sleep patterns, the training I worked so diligently on, was a success! Yay for sleep, bc that is probably the best thing for her when she is feeling bad.

Something I am NOT excited about: I sliced my finger open today. I'm definitely not kitchen/cooking savvy, but I do make 90% of Rylee's food. It's so easy, & I just really enjoy doing it. Anyway, I was slicing & de-pitting a plum, & I sliced the crap out of my finger. To make matters worse, we have CUTCO knives & they are super sharp. I'm really fortunate that I did not my cut off my entire finger tip.

And finally, I am excited.....for BED! Night Night :)

Reminders.

I follow a blog of a couple that just lost their baby. The baby's name was Maddie & she was adorable. She was 4 months old when she died. The death was ruled as SIDS. I highly recommend following this blog. It's extremely sobering & very inspiring. I usually dont follow it everyday, but it always seems that I read it at just the right times. If I'm down about a situation in my life, I end up reading a post about the difficulty of waking up in the morning & heading to the nursery to get a baby that isnt there...& then realizing (again) that she will never be in that nursery again. Suddenly I realize that nothing is more difficult than losing a child. I really believe that there is not one thing on this earth that could happen to me that would be harder than not having Rylee. I feel like I almost experienced that "feeling" and it was almost unbearable. I like reading these types of posts bc it brings me back to reality. Regardless of what is going on in my life, nothing will ever be harder than losing Rylee. I tend to get wrapped up in small (& big) things that are happening in my life. Sometimes I look back & have no doubt that God was carrying bc I definitely didnt make it on my own. But even in those moments, I try to remember that I am so blessed.

The blog isn't always sad posts. Sometimes the posts are goose-bump worthy stories of how Maddie is communicating with them. Im not talking ghost, but rather "signs." I'm not really sure how I feel about whether or not the "signs" are really from Maddie, or maybe just God's way of comforting. I don't really think it matters who is doing it; the point is that it's inspiring. The happy posts remind me to enjoy the little things. Usually, Rylee wakes up, & bc I have insomnia, I let her play around in her crib until she starts fussing. Sometimes she even goes back to sleep for 30min! Anyway, she fusses, not really tears, just the "get me out of here" sounds, but no matter what, as soon as she sees me, I get a HUGE grin. This warms my heart & everything else that is life is throwing me disappears. I'm going to miss those moments when she is a teenager, & I will probably be the one fussing!

I've been absent from posting for a month or so. Life has really been crazy, & I do not like crazy. So, this morning I decided that it was time to remind myself of just how blessed i am.