Threads.

I wasn't planning on posting an update this week. I figured that as soon as I would sit down to type.....my frustration over the past week would overflow....

Here is an example of how our nights have been:

10:30 pm-Feed Adalyn  and put her to bed...sleeping soundly

1:00 am-She gets woken up by a seizure. One of us soothes her back to sleep.

2:00 am-She wakes up....seizure....getting a little irritable,,,falls back to sleep.

3:00 am-Time to feed her

4:00-8:00 am-Still awake. Each time she tries to fall asleep....it only lasts a few minutes before she is woken up by a seizure/spasms. We alternate sitting with her.

9:00 am-Exhaustion hits for her. Crying/screaming ensues.

2:00-3:00pm-After 4-5 hours of straight crying.....she finally falls asleep.

Being on the steroids has been rough. Ever since day one of starting them....she has had a 4-5 hour stretch each day of crying. Saying irritability is a side effect is an understatement.

Ironically....instead of controlling her seizures/spasms.....it made them skyrocket (We have been told this is likely an atypical response or simply because her seizures are progressing). She has been having seizures too numerous to count. If she is awake....she is typically seizing at least once every 10 minutes. She hasn't been able to sleep for more than 2 hours straight before she wakes up from seizing.

Which in turn...adds to the rough nights. David and I were typically running on fumes each day...often getting 3-4 hours of sleep. Thankfully....my in-laws are heaven sent....and have took time watching Adalyn so we could sneak in naps. Showering was a luxury...not a necessity.

I also choose this past week to stop pumping. Cold turkey. All I have to say about that is....ouch....ouch....and ouch.

I felt so frustrated. It was the stinky pits. I felt so defeated....especially because things got so much worse. I felt my prayers were unanswered....and I couldn't see why.....There were multiple nights of tears.

Yet last night....as I sat up with her....I started thinking about this past week. The past two nights have been better. She has been calm during the night, even though she is awake most of it. And her crying has been during the day (much better than the first week when it was during the night). Last night, she was so calm...she would fall asleep for a little while...then even when she seized she would just squeeze my finger and look at me until she fell back asleep. It was so peaceful.

I never cease to be amazed at the person she is. Aside from this steroid course.....she isn't typically a crier. If I were her...with all that she has going on....I would cry all the time. Even with the steroids, once her 4-5 hour stretch is over, she doesn't cry much.

Our stock supply of Adalyn's daily medicines

She has so much love....and has touched so many lives. I look around at all of the things we have for her and have realized that the majority of all the things we have are from other people. Since we didn't know what was going to happen when she was born, we only bought a carseat, a diaper bag and a few clothes.

What we have now...the clothes, toys, blankets, books....pictures...so many beautiful things have come from people that have selflessly given different items to us. As I look around the room last night, I again cried (seriously, it's a talent at this point) with gratitude. All of this things have been given to us because Adalyn has touched them in some way. She is strong. She is full of love. She is a miracle. And I am so humbled to be her mom. Even more...I am humbled to know that other people have been inspired by her little journey. For that I am so thankful.

I love this....look closely...not only has she popped out her cannula, but she is drooling. 

The past week, I felt like I was hanging by a thread. A thread that was fraying.....and lacking in strength.

In holding her little hand last night, I finally began to see other threads.

My husband....who has the patience of an elephant (I don't really know if elephants are patient...but for this...pretend they are). He is the most sacrificing and selfless person I know. When the wee hours of the morning strike...and I am tired...and have my sassy pants on...he doesn't even bat an eye. He is SO good with Adalyn. Even when she has been crying for hours. We have finally figured out the best way to get through the nights. It includes diffusing lavender, a colorful nightlight, and relaxing music.

Our family...They are incredible. Seriously. We get so much comfort from them...emotionally and physically! I'm pretty sure my sister had to give me a pep talk frequently. All of my in-laws are so giving. My mother-in-law took me for my first ever pedicure this week. Talk about a tender mercy! I didn't stress or look at the clock the entire time. I think I am half tempted to live permanently in a pedicure chair. They have also given us time to go on a date. Even if it was just to get snow cones last week....and even though we simply talked about Adalyn the entire time...it was much needed.

Our friends. We can't even begin to thank them enough. For believing in us. For believing in Adalyn.....for sending us messages, oils, cards, and things for our sweet girl...Even when we were too caught up in other things to adequately thank them.

Our faith. Though the hard moments sometimes seem like too much to bear....the peaceful moments never fail to touch my heart. To remind me there is a purpose. Adalyn's life...the people she touches...the hope she brings....there is a reason for all of this.

Each of those things add another thread to my own weak thread.

And for another week.....those threads help me to hang on and keep moving forward.

We will likely be ending the steroids a littler earlier than planned. Because of her response to them....we will likely start weaning her off of them this week and move on to the next medicine.