Monday, June 30, 2008

Bright spots

I just love this smile. It is truly the bright spot of every day. But we've had a few other bright spots lately.

For the last two nights, Micah has only woken up crying once and then went back to sleep. We're all enjoying the benefits of better sleep.

Our greatest joy has been Micah's speech. I know at least one of our doctors was hoping it would spontaneously be improved, and that hasn't happened. But there have been flashes of things that make us very happy.

There are only two consonant in the English language that can be spoken with an open palate: "M" and "N." So Micah's entire spoken vocabulary only uses these two consonants. He also will approximate other consonants using glottal stops. Libby comes out Mimmy. Mama and Baba are almost indistinguishable from each other. Golf cart ride, popsicle and apple juice are "unh unh unh." It's amazing how much he has been able to communicate with the speech that he has had.

But now that his palate is closed, he can push air through his lips and make other consonants. He just has to learn how. Before the surgery he could approximate the closed palate by plugging his nose. We worked on that quite a bit. He still likes to plug his nose when he really wants to make himself understood. But every so often, he will make a B or P very clearly. And yesterday he said "new day" with a perfectly enunciated "D" sound. How cool is that!

Saturday, June 28, 2008

Puppy Tubs


We're starting to resume some semblance of our normal life. Today we took Libby to Puppy Tubs for a much-needed bath. Puppy Tubs is an awesome place run by our friends, the Godas. They have tubs, shampoo and drying stations. You can give your dog a bath and they clean up the mess! Libby even got a shot of papaya scented perfume. A girl's got to be pretty!

While the nights are still rough, the days are getting better and better. Micah started to regain his appetite last Wednesday and is now eating pretty well. He's still on his soft diet and will be for a while.

Friday, June 27, 2008

A Little Bit Better

Last night was a little bit better. Just a little bit. He still woke up every 2 hours, but most of the time he cried just a little and went back to sleep. He had only one night terror, so that's an improvement. We are continuing to alternate Motrin and Tylenol round the clock. It's easy to keep it up overnight when he's up all the time - LOL!

This is Micah and me enjoying our new recliner. It was kinda a splurge, but after one night where Micah would only sitting upright on my lap I decided we needed a recliner. Pay no attention to my cluttery house.

Thursday, June 26, 2008

Mallrats

A long overdue post:

After Micah's pre-surgery appointment, we headed over to the mall to meet up with Aunt Amy, Aunt Kim and Sheridan. We had a great time walking around. The ladies got to chat and catch up. Meanwhile, Thing 1 and Thing 2 were on the loose!

We had a great time talking with Aunt Amy. She and Uncle Michael recently turned in their medical conditions checklist to be matched with a waiting child. They hope to bring their daughter Lynn Marie home in the next year. She's gonna be a great mama. Micah says, "Aunt Amy rocks!"We also had fun catching up with Sheridan and his mama. Sheridan is Micah's best bud and his mama is Mama's best friend. How cool is that? Micah loves his Aunt Kim.
Please keep Sheridan in your prayers. After his cast was removed, his wrist and hand swelled again. The doctors drained it and it has swollen once again. Poor guy. He is scheduled for surgery so they can try to figure out why this keeps happening.

Rough night

We had a really rough night last night. Micah woke every few hours just crying and crying. He didn't seem to be in pain, and he had just had a dose of Motrin. He just cried and refused to go back to sleep. I'm wondering if he had a round of bad dreams. A lot has happened to our little guy in the last week and maybe he's integrating it through dreaming. He woke up a lit cranky, but seems to be doing better during the day. We'll see how tonight goes.

Wednesday, June 25, 2008

He's baaaack!

He's baaaack! What a difference a day (and being off the pain medication) makes. Micah had a positive evaluation by the doctors today and his recovery is right on track. We decided to take him off the pain meds and just start using childrens motrin and tylenol. (Thanks for that advice, Donna!) He came back to us, smiling and being silly for most of the day, leading us to think that maybe Mr. Hyde has taken a hiatus, at least for now. He still is rather clingy and cuddly, but we like that and are eating it up.

Jen, you asked about his sleep. It hasn't been good. He's been waking up every few hours and it hasn't seemed that he reached good sleep until after 4am. We're hopeful for tonight, though.

Tuesday, June 24, 2008

Dr. Jekyll and Mr. Hyde

Micah continues to recover here at home. He regularly points at his mouth and says, "mouth!" I don't know if it hurts or he's just remarking that it's different. His lips are dry and chapped and quite uncomfortable. He's getting Vaseline several times a day for that one. He has developed gorilla breath as well. I can see up through his obturator to his palate. It looks pretty disgusting, but I don't see any holes in the palate. We go back to the dentist tomorrow to check the obturator and make sure it's in place and that everything looks good.

He'd really rather be engaged in active play rather than staying inside and doing quiet things. We've realized why the doctor said no active play since he's a little off-balance and falls rather easily.

He still gets fussy every 4-1/2 hours when the pain medication wears off. He still cries when we give him his medicine, but the cries are more like a minor complaint than the full-out cries of day 1 and 2. He's either getting used to it or he's believing us that the medicine will make him feel better.

Each day he seems more like himself, at least some of the time. But periodically, for no apparent reason, he turns into another child. He'll refuse a cup of yogurt and then scream when it's put back in the fridge. His pat answer to everything is "no!" Even things he wants elicit head shakes and refusals. He alternates between being very cuddly and hating even the slightest touch. More of that intense parenting stuff, I guess.

Sunday, June 22, 2008

Living on Popsicles

Can a boy live on popsicles? We've been home 24 hours and Micah has eaten nothing but popsicles and a couple of spoonfuls of yogurt. They said not to worry about nutrition, so I'm going with it. He's still drinking - water, milk and apple juice so I'm happy with that.

He had a long restless period overnight. It might just be that he slept so much yesterday or maybe it's because every time his medication wears off, he runs a little fever, about 99.

He's much more himself today, but is still fussy off and on. He's being very demanding of time and attention and that's what we're giving him. Here's a picture we took while playing with the camera.

Saturday, June 21, 2008

Intense parenting

Dr. Thomas told us that Micah's recovery requires intense parenting. We had a few flashbacks to China as we were doing laps in the hallway with an inconsolable little boy. Supporting him through the hospital course was tough. I mean tough. He's in such pain and it breaks your heart. When he was hurting, he was mad at everything and everyone. He kinda figured out that Mama and Baba wouldn't discipline him and then tried to take advantage of that. That creates another challenge: how do you parent a strong-willed child who's recovery will be hindered by prolonged crying. It takes a lot of love and flexibility.

Yesterday was a long day at the hospital. Micah was switched to oral pain medication and was more comfortable unless his medicine was late. We spent a good part of the day traveling around the hospital with Micah in a little red wagon. We had a visit from Sheridan and the boys visited the fish pond. Micah still refused to drink, but Sheridan was a hero and lent Micah his sippy cup for inspiration.

After Sheridan's visit, Micah took a little nap. When he woke up, he decided to enjoy a little pudding and some sips from Sheridan's cup (thanks buddy!). He ate a little rice, noodles and mashed potatoes for dinner. We were excited for a little progress, but it wasn't enough. The staff wanted to see him drink more for them to remove his IV.

Last night we finally got some decent rest. Micah slept most of the night, only waking once for pain medicine. He slept the rest of the night. How wonderful. He woke up this morning hurting pretty good, and received another dose. Then he decided he was thirsty. He asked for water and drank a good long drink. For breakfast he ate some eggs, cream of wheat and drank apple juice and a carton of milk. We finally turned the corner. By the time Dr. Williams came to visit, he was looking more like the Micah we know and love and we were discharged to home.

While we were waiting for discharge paperwork we took one more wagon ride, this time with Micah pulling and Elmo riding.

We're home now and he's taking a little nap. We still have a long way to go. He'll be on the pain medication and soft diet for quite a while. We have to make sure he keeps his hands out of his mouth or the no-no's will come back. Our time of intense parenting is not over. Micah has to work through his recovery, but so will we.

The popsicle brigade at home.

Images from Surgery day

Exploring the waiting areaHere is our loopy little guy after his first happy drugs.
Napping with Baba after surgery.
Now it's Mama's turn.

Friday, June 20, 2008

Friday (at least I think it's Friday)

Funny how the days run together in the fuzzy inpatient world.  The day and night go by in small chunks between medications and vital signs and the Mama and the Baba try to sleep when they can. 
 
Our night nurse was awesome!  Love ya Amy!!!!  All of the nurses here are great, but let me tell you when Amy walked into the room it brought such a sense of peace you could practically feel it.  It helped that Micah knows her and he calmed down and got some rest.  Micah's pain is pretty well controlled with the medications he's on and he slept for nearly six hours last night.  Mama and Baba even got a few good chunks of sleep too.  I curled up with Micah in his bed and he slept on my chest for most of the night.  After 4:45, he decided he was confident enough to sleep on the bed next to me.  Bruce slept on the fold out couch thingee in the room. 
 
Micah still refuses to drink or eat anything.  Because of that, we will not be going home today.  He needs to drink and eat regularly before he can be discharged to Mama and Baba's care.  He's a bright little boy and he realizes that things are not the way they used to be and doesn't want to drink anything. 
 
More later, I'm sure. 

Thursday, June 19, 2008

Surgery

I'm having trouble getting access to blog from here so I'm going to try to post from my email. 
 
We got up dark and early this morning and arrived at Scottish Rite promptly at 6:00 am.  After waiting a little they got us back in a room and took vitals from a screaming Micah.  He finally calmed down after receiving his happy drugs at 7:00 and at 7:30 he was taken back to the OR.  The procedures took about two hours and our darling son has a newly constructed palate, a neatly trimed peepee and yes, an obturator.  Well, not technically an obturator, but a stint that was fashioned during his surgery and stitched into place.  This should protect his fresh palate and keep him from opening his stitches.  He came out of recovery wearing no-no's - here they call them Welcome Sleeves.  Let me tell you they are NOT WELCOME! 
 
He wanted to tell us that his mouth felt funny and that there was something in his foot (the IV).  After he was convinced that we knew that these things were happening, he seemed to accept their existance.  The pulse-ox thing that glowed red on his toe was another story, so that's been banished.
 
He is still on heavy duty pain meds every couple of hours.  When the meds wear off he is pretty uncomfortable.  Mama made a deal with Micah to take off his no-no's if he will keep his hands out of his mouth and so far he has kept his side of the bargain.  We are taking turns curling up in bed with him and he sleeps off and on.  He has already comandeered a wagon and seems to be content to do laps around the patient wing. 
 
Dr. Thomas came to check on him and is very happy with where the obturator is and how the palate looks beneath it.  Someone told me that his breath would be horrid, but that is an understatement.  He does have quite a bit of blood coming from his mouth and nose.  He's talking a little bit already.  He'd really rather be anyplace but here.
 
Thanks to everyone who is praying for Micah.  Thank you to Pauline for coming down and keeping our minds occupied during the surgery.  I'll try to keep you updated here, but it might be spotty. 

Tuesday, June 17, 2008

Too Many Doctors!

June has brought entirely too many doctors to our lives. I had knee surgery last week (yes the same knee!) to repair another tear and remove the arthritic material. I'm recovering fairly quickly and hope to be nearly 100% later this week. Of course this requires multiple visits to the orthopedist, pre-admission testing and follow-up visits.

On Thurday, we'll report bright and early to Scottish Rite Hospital for Micah's palate repair and circumcision. He also had to see the doctor for a pre-surgical H&P and go to the hospital for pre-admission testing. This on the heals of his ear tubes last month. He's getting a little tired of seeing doctors.

I'm a little annoyed with our craniofacial team right now. Remember how happy I was that the plastic surgeon was going to place an obturator right away to decrease the risk of a fistula (a remaining hole in the palate)? Well, someone forgot to document that in the chart and it never got ordered. It has to be fitted ahead of time and now it's too late to get one made. Our only choices were to go head with the surgery without the obturator or to reschedule the surgery. Anyone who knows what I've been through to get this one coordinated knows I'm not gonna do that. This may mean that Micah has to wear "no-no's" to keep his hands out of his mouth. Here's a picture of some children wearing no-no's. I'm sure Micah won't be smiling as much as these kids when wearing them.
The plastic surgeon and dentist are going to try to come up with something that will keep him from sticking his finger, tongue or spoon through the repaired part. We are praying that they come up with some amazing idea that turns out to be better than the obturator would have been. Necessity is the mother of invention, right?

Please pray for us as we support our little guy through these procedures. I have no illusion that this will be easy, I just hope it goes OK. Here's the best picture I've been able to take of Micah's cleft. Hopefully by Thursday afternoon that hole will be gone.

Monday, June 16, 2008

Meanwhile, back in the non-special needs line....

The CCAA matched families who were logged in through January 20, 2006, which was eight days worth of referrals. There are still 200 days of log in dates until they get to our original LID. Even though we are home with Micah, our prayers are with those still waiting for China to match them with their children. The wait is so difficult and it's easy to feel that your life is on hold during this time. Wishing peace for all of our friends who are waiting and waiting (and waiting)....

Saturday, June 14, 2008

Happy Father's Day

Fathers Day Glitter Graphics

Happy Father's Day to my HunnyB, who every day shows what a great Baba he is. To my dad, I wish you a glorious, relaxing day. I love you so much. Micah says "Happy Father's Day, Lao Ye and YeYe!" (maternal and paternal grandfathers).

Baba grills the yummiest steak!
Lao Ye and Micah hanging out at the zoo.
I'm so glad Micah got to know YeYe during his recent visit.

Friday, June 13, 2008

Images from First Friday

I finally got my camera back so here are pictures from last week's First Friday. Enjoy!

Thing 2 and Thing 1 Everyone get Mama!

Wednesday, June 11, 2008

Good Friends


I'm just thinking today of the many friends we have in the adoption community. I'm amazed when I look at the list of links on the right hand side of the blog. I know all those people. Many of them in real life. We may not see each other as often as we'd like, but they are truly friends. We would have been alone in this journey if not for them. Not that we couldn't have made it, but troubles are lighter with the support of friends.

I complain sometimes about having to drive an hour to see many of you. But how many people would drive much more than that for the opportunity to have the support we've enjoyed. I may not say it as much as I should, but I appreciate each and every one of you and am blessed to have you in my life.

Tuesday, June 10, 2008

First Friday

Last Friday we made our monthly trek to the North side to enjoy the 4th anniversary of First Fridays. We had a wonderful time seeing everyone in the group. We were thrilled to hear that Michael and Amy have decided to submit a medical checklist for a waiting child. We know that medical checklists lead to children!!! We were happy to celebrate and pray along with Tymm and Laura as they plan their trip to Ethiopia later this week to adopt their daughter. And the joy on Lovell and Jonathan's faces reminded us of our own just six short months ago. Dan's talk reminded us to listen to God's urging to get on the river and go for the ride.

Micah had a blast playing with his buddies, especially his best bud, Sheridan. And of course, Mama left her camera at Sheridan's house, so I won't have pictures until later this week. D'oh! I'll just throw in a gratuitous Micah picture for fun.

Thursday, June 05, 2008

Monday, June 02, 2008

Baptism Video

This video clip is so precious to me. Thanks to Jan for taking the video and giving us a copy.
video

Sunday, June 01, 2008

Micah, Child of God

Micah,
Child of God,
You have been sealed by the
Holy Spirit and marked with the
cross of Christ forever.

Today was Micah's baptism. Words cannot express the feelings in this Mama's heart as we committed to raising Micah to know and love the Lord. But as this is a blog and blogs without words can be dull, so I'll try.

Pastor Miriam began the service by noting that our congregation has waited for this moment for a long time. That conjured memories of being supported by our church family during the wait, during Bruce's deployment and through Micah's adoption. We were blessed to have both Pastors participate in the baptism today, much as they have participated in his life (and ours). NaiNai and YeYe (Bruce's mom and step-dad) were here to share the day as well.

Micah did just fine during the service until the first drops of water touched his head. Then, in true Micah form, he threw back his head and said, "Waaah!" And once the water part was over, he was fine again.

After his baptism, Micah joined Graceflock for a special appearance.