small aspirations

i wish this post was about small goals and ambitions. . . which is the first definition for the word aspirations in the dictionary. unfortunately, i have to write about the second definition. the act of inhaling swallowed liquids into the lungs. because that is what our sweet little miracle boy has been up to for the past few months. all of his coughing/choking/sputtering while drinking from his sippy cup is due to the fact that he's aspirating every time he takes a sip. the only time he doesn't cough or choke is when he drinks from his bottle. we have been putting milk in his sippy cup at every meal, and that has helped a lot (b/c milk is a bit thicker than water). but not completely. apparently (according to the Swallow Study people at CHOP) he is a 'Silent Aspirator'. . . which means that even when he appears to be swallowing liquids without difficulty, he is still aspirating. just not enough to cause him to cough or choke. poor little guy! they speculate that this has most likely been the cause of his respiratory infections this winter (tho i'm not convinced of that, having had a big brother in preschool).
With the onslaught of information, we forgot to ask some questions of the specialists that now seem obvious.
1. Is this common in preemies?
2. What causes this?
3. Will he grow out of it for sure? (I did ask if he'd grow out of it or if he'd need to be seen on a regular basis, and apparently i lumped those two together, and i only got one answer: yes they can see him again in a few months to see if there's been an improvement). hmmmmm.
4. Is this also the major cause of his hoarseness and/or speech delay?

I am putting a call into Dr. Bernbaum asap to consult with her. I'm just frustrated that we didn't have more time to talk with the Swallow Study people while we were there. they seemed to be in a hurry to get us out the door. Still, we are so thankful to have such fabulous expertise at our fingertips, at one of the best children's hospitals in the world. We're glad to be the people who have to go buy thickeners at the pharmacy, and mix yogurt with our kid's milk, when so many parents we saw in the waiting room were there to get their children's feeding tubes changed or replaced, and probably a dozen other things we are grateful to be spared from tonight.
Every trip to CHOP is a trip full of gratefulness!!

And on a side note, our sweet little angel did great! I kept him up all morning, so he'd sleep in the car (almost all the way to philly)! He was not allowed to eat or drink for 4 hours prior to the Barium Swallow, and he did great with that too! Then he slept ALL the way home-- which was a long ride, with traffic. I am so thankful for his sweet demeanor, his daddy's temperment.
So hopefully these small aspirations will eventually diminish and we'll be on our way to happier drinking :). For now we thank God for the many blessings He's given us in this day~

in need of naps

christian has been napping later and later, and as a result, is unable to fall asleep at night. many evenings he is up til 9:30 or 10, wide awake.
if this means he is getting ready to give up his nap (which he so desperately still needs) i do not wanna know. because i still so desperately need it too! this child talks nonstop from morning til naptime and from post-nap til bedtime... and even then, he is unable to keep quiet, b/c he's not the least bit tired or ready to lie still. and with all of the talking, as much as i adore it, mommy needs some quiet time.
i think kids should be required to nap til they're at least 5. . . or old enough to help do the chores i'm supposed to be doing while they nap.
really, i should not be complaining. both my boys are terrific sleepers for the most part. i am a lucky mom. i am a lucky mom. i am a lucky mom.
but please, CAB, do not give up your nap just because you're going to be a big 3 year old. there are a few other things you are welcome to give up-- like your addiction to the binky and your passion for that warm milk in a bottle that no matter how i try to wean you from it, there is nothing more soothing and helpful when you're lacking in coping skills. you can give up whining, kicking your brother, shrieking, and the need for pull-ups at night. you can give up your picky eating, your selfishness with toys, and tantrums ANY time you want.
but please please please do not give up your nap.

not quite!

having a sponge for a child is both entertaining and a little scary. he seems to remember not only words, phrases, and concepts that he hears others' say, but he tends to use and/or apply them to daily life-- and is uncannily accurate most of the time. and we often have no idea when or where he 'picked them up'.
one of my favorites is when we ask him a question and his response is, "not quite."
"Hey Christian, did you see that Forsythia bush out your window?" i asked as we drove through the countryside today. "Not quite. this window is a little too small."
Another one he started with this week is the idea of not making 'sense'.
"Christian would you like this cracker? It's a rectangle instead of a circle! (he's used to Ritz, and i was trying to make the Kashi cracker sound exciting).
"NO! that wouldn't make any sense!" he said in his most frustrated and hungry voice.
When i was putting him down for his nap today, i was reading a dinosaur book to him and he said, "wow that dinosaur is so big, it could carry hun.... hund.... hundweds of people!" (as if he knows what hundreds of ANYthing would look like...?)
My other favorites of his are 'no problem', 'actually' and 'possbily'.... oh, and 'sure'.
"Christian, would you like to go outside?"
"Sure!! let's go!"
"Would you like a granola bar?"
"Sure!"
"No, you don't have your shoes on the right feet."
"Sure i do!!"


Am i ready for him to be 3 in a few weeks?
Not quite.

spring, please.

tomorrow is april 1st. and while i try really really hard to be content with spring being 'around the corner'-- it can not come soon enough!! we are done with the freezing cold temps and drizzly gray days. and most of all, with sickness! when march arrived i was feeling like winter hadn't been 'too too long' this year. i was somewhat proud of myself for having such a positive attitude. but 30 days later, i'm growing a little more impatient. after the plumber came to our rescue and fixed our broken well pump (another thing we take SO for granted) we went to longwood yesterday to get outta the house and into some rainforest warmth. C had a blast smelling all the flowers (and everything else he could sniff!) and it was a nice escape. K, who has been battling this lingering ear infection and bronchitis-type cough since the last post, was delighted with all of the fountains-- he wanted to climb in all of them. i think he thought they were bathtubs. he is going to love the pool this summer! can't wait!!! so glad he is feeling better. poor little guy had a rough weekend.
found out this morning that poor mom has had a recurrence of her acute arthritic condition that surfaced last year around this time, attacking her weaker joints, ie, her knee replacement. she cannot seem to catch a break-- and i so wish there was something we could do! like transport her to a sunny beach for the day. ok, so i wish we could all do that. but i suppose we will be complaining about the heat in no time-- and taking for granted those sunny (healthier) days we all so long for now.

18 months

Tomorrow Kyren will turn 18 months (14 months developmentally).
Yesterday he had his appt. with Dr. Bernbaum, his devpmtl. specialist from CHOP.
In her words, she was "blown away" at how well he's doing overall. She and her partner doc. kept commenting on how sweet his personality is, and how mild-mannered his disposition. he let them examine him up and down, and never whimpered, cried, or pulled away. I told them he was used to it by now. They said, "oh no. There are plenty of babies who are used to this kind of poking and prodding but don't have as calm a reaction as this one!"
The great news is he no longer needs PT, he is on the growth chart for his adjusted age for height, weight, and head circumference, and he is not technically delayed in any areas. . . except speech. We spent the majority of the time talking about his Upper Respiratory issues and his lack of vocal/verbal expression. At first they were gung-ho on it (his hoarseness, lack of vocalization) being related to reflux-- but once they saw him drink his sippy cup and cough his nasty cough, they quickly changed their tune. They believe he's been aspirating all this time-- causing his lungs and airway to be reactive and rubbed raw.
Soooo... he is now scheduled for a hearing test (just in case there are any related speech issues), a Swallow Study (ugh!), and a speech/language evaluation at CHOP. He's (thankfully!!) off the nebulizer, and on a precautionary inhaler (of flovent) 2x a day. . . which is like a mild steroid to beef up those lungs. to add to it all, the poor little guy had a mild ear infection, so add to all that-- amoxicillan 3x a day for 10 days.
but ya know what? compared to what we COULD be going through-- we'll take it!! we'll take it all!!
We've already seen an improvement by putting milk in his sippy cup today. he has not choked or coughed at ALL. unbelievable. apparently water (which is all he ever drinks from the cup) is a lot thinner and 'harder' to swallow than milk. who knew?! wish WE had!! all this time :(.
Dr. B is hopefull that he will grow out of this phase as his lungs mature (as most preemies' lungs do). And thus... so are we. :)
Happy 18 months, to our happy little soldier!

what a world

it's been a rough week of sad news in our little (and big) world.
with charlie sheen's delusional rampage as a sort of canvas/backdrop for it all....

my poor mom went from in bed with pneumonia to in bed with shingles, practically overnight..
we have had (in no particular order)
a friend whose mom passed away after years of illness...
a friend waiting to hear test results for possible cancer...
a friend whose twins were just diagnosed with TTTS in utero...
a friend who's been hospitalized due to mental illness...
a record earthquake in Japan with resulting tsunami.
a brother from church who lost his battle with drug addiction last night.
and a friend who is having complications with her long-awaited first pregnancy.

life is hard, yo.
one thing after another makes for a heavier heart than normal. and yet, on the tails of my last post, i wonder if God is letting me in a little more to the things that break His heart, so-to-speak. these sorrows (multiplied exponentially) are all before the eyes of the Lord, all the time. Jesus walked this earth, aware of each and every breaking heart he encountered-- he was a "man of sorrows" himself, well acquainted with grief. and because he walked our road, knew our pain, and bore the entire weight of it all on our behalf, we are able to weep before him unashamed. we do not bring our sorrows before a distant, unfeeling God, but to an intimate friend and ultimate healer.

"For we do not have a high priest who cannot sympathize with our weaknesses, but One who has been tempted in all things as we are, yet without sin. Therefore let us draw near with confidence to the throne of grace, so that we may receive mercy and find grace to help in time of need."
(Hebrews 4:15-16)

I love that when our hearts are overwhelmed, and our tongues get tied, we are able to lean on the promise that God knows our hearts, and His Spirit actually intercedes on our behalf-- He interprets our groanings too deep for words-- and turns them into prayers for us. And so, as i go about my busy day and am distracted by the doings of motherhood, i pause here and there to groan for you, my friends; to speak the language of longing, hurting, waiting, anxiety, helplessness, grief, and pain... from my heart for each of you (and the millions of others who join our cries) to the GREAT heart of God. ....who amazingly hears each cry as a Father, and rushes to throw His comforting embrace around you.
May you find your peace in knowing He knows your hurt, and He loves you through it, more deeply than you can imagine. We live in a crazy world. But we do not live without Hope.

Lessons from the trash heap

I have been aware lately of how easily i slide into living this comfortable American life, forgetting that the majority of the world is suffering in ways i cannot even imagine. And ashamedly, I must admit that I even struggle to pray for God to break my heart for the things that break His. It is uncomfortable to go there. And Americans like comfort. A lot.
We support a few kids through various organizations, and I am still prone to grow callous toward the real life horrors that they face on a regular basis. I feel guilty throwing the Compassion International quarterly magazine away, so i put it aside til i have 'time' to read it. Sometimes it takes months for me to get around to it. I am so consumed with my own comfort and ease that I can't even make time to read about the poor and needy... let alone break for them, pray for them, or consider the blessings I've been given are just that-- blessings-- not rights. What kind of Christian (follower of Christ) does that make me? Do i really worship (revere, honor, and depend on) God? or do i worship comfort?
After (finally) reading through the articles of this Winter's issue of Compassion Magazine, I was challenged anew to get on my knees and repent for the sense of entitlement i have to all 'my' things, attitudes, and expectations of my little life. I don't feel guilty. I feel awakened. I feel thankful for my healthy children, my husband's job, my many material (undeserved) blessings... i feel like i can face my trivial trials without complaining! Seriously, when was the last time you went a whole day without complaining about ANYTHING?
I fell asleep (in my clean, warm bed) after reading about the children who walk barefoot in the trash heap all day to support their families, with the question rolling around my mind, "Lord, does your heart break more for these poor and needy children who live in the garbage, or for me, who lives in complacent wealth and looks the other way?"
which is more disgusting?
who is really the poor one here?
What do we filthy rich know about God's Heart, when we are so attached to the things of this world? And complain when we are deprived of our so called rights to comfort, entertainment, fashion, status, etc?
The answer I believe God would give is that His heart breaks for all of us. He longs for the children in the trash heap to know that they are not garbage-- that they are loved beyond measure-- and that He died to set them free to be loved and accepted, even in the midst of their desperate circumstances.
He longs for me to release my grip on all that I think will bring me peace and happiness-- to realize it's all garbage compared to HIM-- and to lay down my life for those less fortunate-- to offer hope and love to the needy. not just the physically/financially needy, but the downcast, the desperate, the questioning and hurting, orphans and widows, the mourning, suffering, lonely, angry, rejected-- the neighbors, friends and strangers i pass by everyday and choose not to hear their silent cries, or offer hope, in the name of my own comfort.
Oh Lord, help me to go there. to get uncomfortable. to walk into the trash heap of people's lives and extend the only true hope that exists -- for the rich and poor alike.

****
Here is one of the short articles that opened my eyes once more to the work that God is doing, and wants to continue to do through ministries like Compassion, and through the lives of those 'more (or less) fortunate' than we might think:

"Lessons from the trash heap"
FROM THE HEART OF THE PRESIDENT [of Compassion International]
WESS STAFFORD
I have hated poverty ever since I understood that it was responsible for the deaths of
nearly half my boyhood friends in the African village where I grew up. I especially
hate that it is most cruel to innocent, vulnerable children. So I fight back. I cannot
thank you enough for fighting alongside me at Compassion. I wish each one of you
could see how powerfully God is using you to rescue and protect “the least of these”
who need your help the most.
The daily grind of relentless, abject poverty damages children’s
developing sense of worth, smothers their dreams, and far too
often steals their health and life. As you will see in this issue, some
children grow up where no child should ever be — near the dangerous
environment of big-city garbage dumps, scavenging for survival. But
Compassion is there — and so are many of you.
I once took a group of Compassion supporters to Guatemala. I knew
that visiting the capital city’s huge dump would be a tough experience,
but I wanted them to have the opportunity to encourage the children
who live there every day — the poorest of the poor.
Our van came to a stop in that miserable wasteland, surrounded by
mountains of disgusting debris. The stench was overwhelming in
the sweltering heat. Hordes of flies immediately swarmed us, and we
could barely hear each other over the roar of the bulldozers. After
the visitors had been engaged with the children for a few minutes,
I noticed that one person in the group had refused to get out of the
van, and he was fuming.
“Wess,” he said, “you told me Compassion’s ministry is about hope and
dreams. Then you bring me here. There is no hope here. No dreams are
possible. I see only tragedy and despair. Nothing good could happen
here.” There wasn’t much I could say in that moment to calm him
down, so I left him in the van and breathed a prayer.
That evening we gathered for a small banquet with formerly sponsored
children who had qualified for Compassion’s Leadership Development
Program (LDP). We arranged for the visitors to sit at tables with
the LDP students. During the meal, I walked around the room to
greet people. I slowly approached the table of my angry friend and
tentatively asked, “So, how are things going here?” My friend, who had
been so upset earlier, looked up at me with tears in his eyes and said,
“Wonderfully. We have the best table of all.”
“Really!” I replied. “Why is that?”
“Because of her,” he answered, pointing across the table to a radiant
young Guatemalan woman. “She is amazing,” he continued. “Ask her
where she grew up.”
She smiled at me and said, “I grew up on the city dump you visited today.”
My eyes welled up with tears, and I thanked God for His divine
orchestration of the seating arrangements. I asked her name. “It’s
Aury,” she replied. “I have been accepted at the university as a
business major.” Amazing indeed.
“Aury,” I asked, “what do you know now from having grown up in that
awful place?” I will never forget her response.
“I know two things. First, I know what it feels like for people to look
at you and think you are garbage. When I was very small, the dump
trucks wouldn’t even swerve to avoid hitting me — the drivers thought
I wasn’t worth the effort. If I had been killed out there among the dogs
and vultures, probably nobody would have even dug a grave for me.
I was already where I belonged — garbage in the trash heap.”
It broke my heart to hear that. “And what else do you know, Aury?”
I asked gently.
She beamed and said confidently, “I know that nobody is garbage. We
are all loved by God and He has a perfect plan and purpose for every
life. That’s what I know.”
By now, everyone at the table was in tears. My friend, his anger
transformed to awe, whispered to me, “That’s not all. She doesn’t have
an LDP sponsor yet.” By the end of the evening he had sponsored her.
Aury has since graduated from college and started her own business.
She owns a store not far from the dump where she grew up. When she’s
not working, she often gives back at the Compassion child development
center she attended, on the dump’s edge. Because of her childhood
sponsor, she went to school, received health care, and had a safe place
to play and grow. She became a Christian and began to dream of a
better life. Her LDP sponsor made it possible for her to attend college,
where she developed skills to be self-supporting. Poverty was defeated
in Aury’s life because people who cared stood up for her. Now she loves
the children at that same center, and to them, she is a beacon of hope.
Some people don’t want to know that children live in wretched conditions
like these. Thank you for not looking the other way. Together we are doing
heroic things to serve the local church in these desperate places, enabling
them to lovingly intervene to save children’s lives and change their
futures forever. If you doubt it, ask Aury!

*the rest of the magazine's articles can be found here.
to learn more about Compassion International, click here.