Happy Birthday Aislinn l Aislinn 12 Months

(I hope to take...or have taken...Aislinn's one year photos when she gets her feeding tube out and the weather is nice. That said, she pulled it out for the third time last Friday so when the rain stopped, briefly, I threw together some stuff and took a few photos. Literally just a few. But I'm so happy that we will at least have a few to remember her at an actual 12 months!)

Sweet, Sweet Aislinn. You are our delight. You truly are our sunshine when skies are grey. And boy were they grey this month. Little love, please don't hold it against your dad and I if we are over-protective in your upbringing. I promise we will do our best to only be as over-protective as any other parent. :) I pray you will never understand the anguish of watching your little baby fight for her life. I pray you will never have to endure what we did while you were in the hospital.  But if you do, and in some form you will because there is suffering and pain and hurt and sadness in life, I pray you will find hope. In Him who our hope comes from (Psalm 62:5).

Because this month was also full of hope. So much hope and love. Each day that is all your dad and I could give: hope, prayer and loving you so much it hurt. And from others as well. You have had more people praying for you this month than most one year olds! Hundreds of people lifting you up to our Lord, our Creator and Healer. You are deeply loved by many. I pray you will grow up with this tangible evidence of the body of Christ, of the power of prayer and of the miracle and blessing of your life. 

You are our little miracle, our little fighter. You have an amazing spirit and we have seen the depths and the breadth of it. I have a feeling we have only seen a glimpse. Every day you continue to amaze us. You are full of life, curiosity and joy. Who we once thought was our contemplative observer is now coming out of her shell with big smiles for even strangers. This year will be so fun to watch you develop socially.

You have a constant and deep love for your family, but always a special spot reserved for mama. :) That said, you are quickly becoming a daddy's girl. You say both of our names and even occasionally say "Rah Rah" for Ro. You most definitely adore your older brother, and he you. You love to laugh at his crazy antics as much as he loves to entertain you. You are the perfect match for each other. He is learning the frustrations of being an older brother as you become more curious, opinionated and most importantly, mobile.

We love how much you love music! You like all kinds of music and any 2 objects that can be banged together to make music. You cluck your tongue along with a song or a beat. You often get so excited to hear music that you just can't help but move. I can't wait until you're standing and can really boogie! More than anything, you love our family dance parties. While you were in the hospital, daddy longed to hold you and dance again. Our first dance party (to Mumford & Sons) was emotional, exhilarating and unforgettable.

(after a few minutes, it started raining...again...so we moved inside to try a few more shots. I love this sequence. I like your face, baby girl)

The desire to be mobile and get to your toys has finally struck. Though you still get stuck in this position, we are working hard together each day to get you crawling. Of course, this will make my job harder, but it is an added responsibility I am looking forward too!

Ironically you and Monkey both suffered head surgery on the same night. You at the hand of a highly trained and experienced neurosurgeon and Monkey at the teeth of a certain needy and semi-obnoxious pup. If I ever get to patching her up, you'll have matching scars. ;)

Ais, we love you so much. We pray that the miracle of your life can only mean that God has big things in store for you. Who knows what they may be, but we pray you will love Him deeply and will lead others to do the same. You are a blessing. 

Happy 1st Birthday (plus 3 weeks!)!!!

Love,
Mama and Dada

8 Years!

Happy 8 Years My Love!!!

I'm so glad we can laugh together through all of the ups and downs, especially this past year!

You are the best, my one and only. I'm so thankful we get to go through life together. Cheers to another 8 years - plus another 50 or so ;)

Ais Update 6/17

Yesterday, Monday, we had our first round of Aislinn's follow-up appointments. CT scan, neurosurgery follow-up, occupational therapy...busy day!

Up bright and early for our day! Ro got to play all morning with some of his favorite friends. 

I had time to kill between appointments and it was such a nice morning, so I grabbed a coffee and took Aislinn to the healing gardens at Sacred Heart (South of the ER). I had wanted to go there while Ais was in the hospital but never had the chance. It was such a beautiful morning and really a nice place to be. It reminded me a bit of the Japanese Gardens at Manito, a very scaled-back version.

so fascinated with my teeth lately

Sophie!!!

Aislinn's CT came back looking great. They cyst is actually smaller than before, which surprised me. We originally thought that the cyst would get smaller and smaller as the brain grows and the shunt releases the extra spinal fluid. Then we found out that the cyst is not intended to get much smaller than it is. This info from the Cedars-Sinai website kind of helps explain: "Since arachnoid cysts adhere to the structures that they touch, surgical options will often aim to relieve a patient’s symptoms by opening and draining fluid from the cyst. This method is often preferred over removing the entire cyst and risking injury to the brain." We're glad to hear that the cyst is actually a little smaller. It just makes me feel better regarding her brain growth and development.

Aislinn also got her stitches out and got the "ok" to sleep in a more reclined position (previously we had to keep her inclined more than 60 degrees 24/7...so hard and not very restful for the poor babe). She was SO happy when we put her down in her crib without all the pillows and blankets we had been using to prop her up. She slept 12 hours straight! We slept 8 hours! 

We had a long OT appointment, but it was kind of like playing so it was fun. :) I had to wake Ais up to play/be evaluated. She wasn't exactly in good humor by this and the fact that a stranger wanted to interact with her. But she warmed up and did great. I was happy, and not surprised, to hear that she scored above average in cognitive skills and fine motor. Also not surprised that she was just under average in her gross motor skills (crawling, walking) and language. She is picking things up like crazy lately so I think she'll be up to average in no time. It really is quite astounding that Aislinn's development has been so normal considering the amount of space that cyst occupies in her head. Her brain has compensated so well. The complex ways a brain develops and operates is so beyond me, but it reaffirms that our Creator is amazing. 

I'm going to resume my Praise/Prayer format for this post and thank you in advance for continuing on this prayer journey with us.

Praises

-praise God the shunt is fully engaged and operating well!

-we're SO thankful Aislinn can now sleep in a position most comfortable to her. She needs the best kind of rest she can get and so far, this seems to be working well

-no more methadone and valium!!! Monday was the final day for both and there is a clear difference in her behavior. She was doing so well on the minimal amounts of the drugs, but today she ate better, slept better and seemed even happier

-her brain development and skill set are amazingly normal. Praise the Lord

-we are getting back into our normal routine and everybody is happier for it. 

-Ronan is doing so much better now that we've been home a week and are back into some sort of routine. And after a good conversation he and I had tonight, he is much more secure about us being home for good. Major parenting fail: we assumed that since we're home all the time now, he isn't worried about us leaving. Wrong! He needed verbal recognition and reassurance that we don't have to go back to the hospital, that we'll always be here in the middle of the night and naptimes. Poor guy. He thought we were about to take off at an given moment.

-we continued to receive meals through today and have a fridge and freezer full of leftover. It has been a HUGE blessing to take this task off my list and know that my family will still have great meals. Thank you to everyone who blessed us in this way!!!

Prayer

-Aislinn will remain on the feeding tube until she can consume enough calories orally. She has not been very interested in all of her normal foods, except cheese, so I fear the feeding tube will be sticking around for awhile. However, today was better and we think it has to do with her being off of the withdrawal medications. Pray for an increased appetite and that Ais continues to progress enough that she can be off of the feeding tube within a month.

Around Here

Today was our first day totally at home, totally back into routine. After the craziness of yesterday, we had a super low key day. I may or may not have hung out in work out clothes all day. I may or may not have dressed only one child. :) We played a lot, the kids took long naps and I (kind of) worked on getting our house back in order. Ais has been so happy and Ro is back to being Ro: sweet, snuggly, well-mannered, playful. Still 2 1/2 and still impatient and tempermental, but much, much sweeter. :) He most certainly thrives on routine.

We need Aislinn to consume more calories orally so we can get her off the feeding tube. It's been a slow process. Today I gave her a cup and straw (instead of a sippy cup) for the first time and she loved it! She drank all of her milk. Hooray!

Such a big girl

She got her stitches out yesterday, so I'm all about getting her back into headbands. :) As long as they're loose, comfortable, don't hurt her, etc. I tied this yellow ribbon because it matched the bow on her skirt. Cute!

then Ro snatched it because it's like a big giant tag. He hasn't let go of it all day. And at least it's not pink like the last one he found. :)

Is it just me or did Aislinn change overnight? She went to bed a baby and woke up a 1-year old. More defined features, brighter eyes, a double chin (barely. you can see it in the last photo). Or maybe it's that she is now completely off methadone and valium and that we haven't seen her in some sort of sick or drugged form for 3 1/2 weeks. Or maybe I'm just crazy. But this happens to me every once in awhile, with Ro and Ais. They have an overnight growth spurt and look totally different in the morning. Does this happen to anyone else???

playing peek-a-boo, her favorite game

"yay!"

"hooray!"

she resembles one of my baby photos here

she LOVES reading and turning pages lately

Ro has been really into reading to us lately. I love this progression!

Father's Day

I'm going to speak for Patrick and say that he had a good Father's Day. ;) I'm pretty sure he was thrilled to spend a relaxing day together as a family. Ronan and Aislinn are so blessed to have such a loving, smart, fun, resourceful*, Godly man as their father and role model. And I am incredibly thankful that he is my man and we get to do this parenting thing together. :)

*and by resourceful, I mean Renaissance Man, also known as a polymath, a person whose expertise spans a  significant number of different subject areas. Thanks Wikipedia for teaching me something new today. 

My dad came up to help us out with a variety of things so we got celebrate Father's Day morning with him and my brother who stopped by. Three of my favorite dads in one place (we missed Papa Mark).  Thank you Dad for coming up and serving us on your weekend! I must say that Patrick and I, and of course Ro and Ais, having two pretty awesome dads/papas to look up to. Patrick thinks Mother's Day/Father's Day are just commercial holidays (and maybe they are) but I'm glad for the opportunity to reflect on how blessed and impacted we are by the great dads in our lives.

After breakfast, it was just the four of us for the first time in 3 weeks. That's a long time! We had so much amazing help while we were in the hospital and then while we transitioned at home. I think it was the perfect day and perfect timing to ease back into our normal daily routines. We spend the afternoon/evening out and about, ending with a picnic at Manito.

Ro's initiation to Angry Birds (I love that this sequence of photos all happened within about 30 seconds)

Ro's favorite new activity...balancing on daddy

Life as Normal

It's crazy to me that we left the hospital only 4 days ago. And I can hardly wrap my mind around the fact that one week ago we were still in PICU. One week ago Aislinn had her internal shunt put it. My semi-functioning-tired brain, attention-craving two year old, needy pets and that stinkin' feeding tube all remember that it's only been a few days. But when I look at that sweet girl; when she smiles, laughs, waves, claps...when she learns new things (like saying "na na" for no no, and covering her eyes to play peek-a-boo)...our hospital stay feels so far in the past. She is amazing. Her ability to bounce back has been phenomenal.

flirting with that cute girl in the mirror at her dr appt

first outing...a trip to costco for a vacuum cleaner and a hot dog lunch

first real bath in a few weeks

It's not all rosy pictures around here though, there are hard moments (and hard nights). We are inexplicably tired (though, not really inexplicable, right?). We are trying to parent our two year old back into the realm of normal two year old behavior, with extra grace, extra love and extreme measures of patience. We are trying to nurture a little girl who, though better, still has a ways to go. We are trying not to worry over every little thing...

Most of all, we are trying to return to life as normal. And today, life was as normal as we're going to get for awhile. We did some yard work, had a water gun fight, barbecued burgers, went on a walk. My dad and Patrick worked on some projects for the basement. It was awesomely normal. :) I was on the verge of tears many times, happy tears. I thank God for each of these moments and the ability to be together again as a family. Aislinn was beyond our grasp, out of our hands for long enough to make us appreciate every little detail with her now. I have always known that our children are truly God's and that he is the one in control of their lives, but oh my goodness, learning how to actually live that out is insanely difficult. Especially in such a dramatic fashion. I am so glad God has placed her back in our arms and we get to all move forward together.

lovey eyes for daddy

Unfortunately Ms. Ais was asleep for our water fight, although I'm not sure she would have been a big fan. She's pretty sensitive these days, understandably. It may have been best though because Ronan was thrilled to have one-on-one time with both of us.He so needed that.

Of course, Ronan wanted to have another water fight when he woke up from his nap. Luckily he was just as happy to squirt my plants for me. :)

It was a good day indeed.