Sleep Becomes Her

Today was the day you finally took a nap at school. I think that is a good decision Shnook. If you rest a bit then you can better enjoy your afternoon...whimper free. :-)

Going Strong

Audrey, you had a fantastic first week of school! You never succumbed to sleep while in class, even though you were given opportunities to nap and your journal today mentioned "whimpering off and on." (So cute and pitiful.) Either you are afraid to miss something or you think staying awake is what we expect from you at school. Regardless of which, your stamina and sheer determination has blown me away! Each afternoon you arrived home awake and talkative so I encouraged you to hold out a few more hours until bedtime...nevermind that every day bedtime came a bit sooner than the night before. Thankfully tomorrow is Saturday--your favorite "big kid" thing to do is sleep in and this week you earned it!

First Day of KINDER!

So big!

I can't believe today is your first day of kindergarten! Maybe it is because you are so tiny, it doesn't seem possible you could leave on the school bus and not come back for 8.5 HOURS. Or maybe it is because in your early months/years I never imagined this day would come. I remember watching as parents lamented this huge milestone and would think to myself, "Consider the alternative. Your child could quite literally stay in the baby stage forever and never go off to school, make new friends, learn new things. This is good. This is what you want." At that point, I didn't know school was even a possibility for you. Now the time is here and you are gone. I miss you, but am thrilled knowing you love school and receive excellent care there. Your teachers, nurse, therapists, bus driver and bus aide are all the same from last year, and each is wonderful.

So even though nothing changed for this school year other than the amount of time you will be gone, we woke up early to take those all important "first day of school" photos. Thankfully traffic was terrible and the bus was late, otherwise you may have gotten on the bus and left us with this.

You have no idea what it takes to get a decent picture of all of us around here. An act of God. ACT OF GOD.

With the extra minutes, we were able to grab some better photos to help remember this day.

As good as it's gonna get today.

So happy to go to school.

We love you Audrey!

This is what the proud parents of a kinder kid look like.

Or more specifically, this is what the proud parents of OUR kinder kid look like.

You came home with a great report. Even though you were given the opportunity, you didn't nap at all. I am so impressed. Last year you came home around noon and would sleep for 3 or 4 hours. I figured you would be exhausted today but instead you talked to me...LOUDLY...for a long time, telling me all about your day. Eventually you drifted off in your chair, and I let you catch a quick 45 minute nap before waking you. That was enough to keep you alert until bedtime at 8:00. You may not be able to sustain this pace all week, but already you have way exceeded my expectations. So proud of my kinder girl!

Lots to say about your day!

Meet the Teacher

Somehow Daddy went all last year without meeting Mrs. Julie and it's been a full two years since he met Nurse Mary. So we all loaded up and went to "Meet the Teacher" tonight.

As soon as we walked in and you heard their voices, you started smiling, talking, and kicking out your legs. It is so apparent that you love the people who fill your school day and that they love you. I know you are going to have a fabulous school year!

Good Good Friday

This morning everything started off as expected. You and I arrived on time, checked in, answered questions about your medical history, met with anesthesiologists, nurse practitioners and the surgeon. The process took about two and a half hours, with most of that being wait time but we didn't mind. I held you while reading a book so that I could drop kisses on your face every couple minutes. You were perfectly happy to have all my attention for the morning. And I was happy to have some quiet. As the team was about to take you away, Dr C reminded me that he was fully prepared to do surgery based on her history, but that after you went under and measurements were taken he would come out to confirm permission to make the cuts.

He and I were both very surprised when Dr C came back out 40 minutes later to tell me your pressures looked great! Well, you know, great for you. You definitely have glaucoma but the drops are doing their job and no shunts were needed today. More importantly your optic nerve is stable which is terrific news for the vision you have remaining. This is a huge gift--as if we didn't have enough to be thankful for on this Good Friday.

In recovery you woke up like a champ, but as always I had to convince the nurses.  When I walked up I was told, "She is still sleeping."  You weren't. When you heard my voice and turned your head a bit and put your hand to your mouth to say "Mama" I told them you were feeling fine. 20 minutes later you were "talking" and had a tight grip on my fingers and another nurse said we could go home when you woke up a little more. "Well, this is as awake as she gets. If we wait too much longer she will fall back asleep." When it became clear to them this was your usual, they set us free. We picked up Daddy from work and brought home Crave Cupcakes to celebrate. Then you and I took a long nap.

I am very proud of you shnook. And praising Jesus that 2000 years after his death he is still performing miracles.

Day Surgery

Tomorrow we report to TCH at 7am for an exam under anesthesia for your glaucoma  It's pretty routine stuff, we've done it half a dozen times before. They will put you under, check your eye pressures, and then hopefully pull you back out.  We could be home by noon.

Unless...

...the doctor doesn't like what he sees. And if you are trending in the same direction you have been that might be the case. From infancy you were on one drop per eye each day. After about a year we bumped it to the same drop twice a day. Last year we added a whole different drop in addition to the other one.  If the exam tomorrow shows your pressures are still on the rise, they may go ahead and place a shunt in each eye.  It's been a few years since we seriously discussed that possibility, so my understanding of the process is far from complete. I'm about to do a little research before heading to bed.

Your sight is so fragile--any surgery to your eyes gives me good reason to be concerned. But if your pressures are high, there isn't much alternative. Glaucoma left untreated will result in certain blindness.

You, my sweet one, sleep well. Tonight we pray that our trip to the hospital tomorrow will be a short, uneventful one and we can get home early to begin our Easter weekend celebration!

103rd Day

Tuesday you got off the bus looking precious in your 100th day of school glasses. From what I can tell on FB, this is a pretty big deal. I had no idea. So I didn't take this photo until Friday, the 103rd day of school.  Adorable nonetheless, am I right?

Hurrah for 103 days of school!

Of course your brother has to get in on the action.

Fashionably Tiny

Milestone day!

Today I moved all of your 3-6 month pants out of your closet. Really they still fit you great in the waist, but are much too short, even to pass as capris. So now you are officially only in 9mo or larger pants! As for tops, 12mo or 18mo are ideal for your length.  I just choose not to notice how baggy they are. Size 3 shoes still fit perfectly.

One thing can be said for staying little: you can wear the same clothes for years. And that translates into quite the wardrobe for my little fashionista! 

Max Rate Reached!

After twelve days of bumping up your feed rate, you are now at the maximum speed of 400 mls/hr. You get your entire feed in 15 minutes! So if we leave the house after you eat and know that we will be back  within four hours, I can leave the pump, milk, and cooler at home. FREEDOM!

The best part is that since we have made the change you are vomiting much less than ever before. I am so impressed with you!

Friday after school we will begin slowly add volume to your feeds.  Probably just water to start--I think extra hydration alone will do wonders for you. Eventually we will throw some calories in there.  Audrey, this is exciting stuff!

Happy Mistake

Today I made a mistake that led to a shocking discovery.

I clean out your pump bag each morning by changing the rate from your usual 78ish ml/hr to 400 ml/hr, and letting hot water run through the tubing while I do other things.  Then I change it back for your 8am feed. Today you stayed home from school--you are recovering for some tummy bug or an Audrey episode--and slept till nearly noon. When I woke you up, I noticed the settings were still at 400 mls/hr.

Ugh.  Immediately I kicked myself. This is no small mistake. The consequences could be...then it dawned on me. Why weren't you vomiting? On a good day I would have expected you to send it all back up at once, but even sick you had kept everything down.

I have been told by a few other SLOS moms that their kids do better if given their feeds quickly all at once rather than slowly over time. It seems counter-intuitive to fill you up since you have such slow motility, but it seems as if a longer break does the tummy good. I have always wanted to try feeding you faster, but had visions of popping your small stomach with too much volume. So I inched it up and then backed it down whenever you got sick. Up and down, again and again.  When Luke was born priorities shifted until I forgot all about increasing your rate.

But this morning shows me I can make more aggressive changes and can possible expect better results. My plan for now is to increase each feed by 10 mls/hr until you start showing signs of discomfort. It will be amazing if we can significantly decrease the amount of time you eat each day, giving you more freedom from the pump.  Ultimately my hope is that fast feeds mean quicker digestion which might allow me to feed you more frequently. And that may result in your first weight gain in over two years! You, my tiny (but mighty) Shnook, need to bulk up.