Tuesday, November 22, 2011

Leaving on a jet plane

It's hard to believe—even for me—that in just a week Levi will undergo open heart surgery. You'd never guess he's sick.

Since his last two surgeries in 2008, we've spent much time and energy reigning Levi in. He's the first one to get up in the morning and, if it were up to him, would be the last to sleep at night. He spins through each day like a tornado, leaving behind a wake of toys, half-eaten sandwiches, cups of water and pockets-full of treasures. His hands are always busy as is his mouth, spinning tales about friends—real and imagined—and asking a string of questions to which he usually already knows the answers. He never misses an opportunity to speak to a stranger, touch an object, write his name on an unblemished surface, push a boundary, dispense a hug, plant a kiss, or issue a spontaneous, "I love you." He is, in short—and he is that too—a force of nature.

And yet on Tuesday at 5:40 a.m., Levi, his father and I will board a Delta puddle jumper bound for Philadelphia and its children's hospital—rather unsolicitously known as CHOP—for a procedure of as-yet unknown proportions. Here are the problems the surgeon will face:

• Double outlet right ventricle: in other words, instead of the major arteries exiting the right and left ventricles of the heart, they both come from the right side
• A large, malaligned ventricular septal defect (VSD): he has a hole between the left and right ventricles that's huge and in the wrong place—not that there's a "right" place for it, I suppose.
• Transposition of the great arteries: the pulmonary and aortic arteries are backwards, meaning that oxygen-poor blood gets pumped into the rest of his body.

Three-and-a-half years ago, shortly after Levi came home to us, a local surgeon patched the VSD. However, because of its location, the patch itself interferes with the blood flow inside the heart. Because he's a growing kid, Levi's doctors here have been monitoring these pressures closely, and a couple of weeks ago he hit the magic number telling us it's time go back in.

At CHOP, the surgeon will determine whether the patch can be adequately modified or if greater measures will be required. The cardiologist I've talked with there, Dr. Bird, has mentioned the possibility of a procedure known as Ross-Konno, which would essentially re-plumb Levi's heart, replacing the aortic valve with the pulmonary valve and the aortic valve with a transplant, or allograft. Although used primarily in instances of valve disease—Levi's valves work perfectly well—this procedure can also be a solution when the anatomy of the heart defects prevent simpler fixes.

We're voting for option #1, but we will see.

Levi's (wonderful) new cardiologist feels confident that we've chosen the right place for the surgery. The surgeon at CHOP, Dr. Spray, specializes in this type of heart problem. If all goes well we could be home within a week. We're nervous, of course, but feel confident he's in good hands. CHOP is the number two pediatric cardiac center in the country. And, more importantly, Levi has a Father who loves him even more than we do.

Stay tuned...

Friday, November 4, 2011

Before Christmas

We knew it was coming. They are hoping to get him soon. Pressures have changed in the heart and we will be heading to Philadelphia to get some work done on his previous repair.

Wednesday, June 24, 2009

Pacemaker 2.0

The pacemaker went in without a hitch. The last one had worked it's way down into the intestines so they placed this one on the surface making it appear much larger.

Monday, June 8, 2009

Pacemaker

The pacemaker that was to last nine years is do to be replaced tomorrow (6/9/9). This is not a surprise, the scar tissue has been impeding the current from day one.

We also have discovered recently that as he is growing the patch in the heart is creating an uneven pressure gradient. The cardiologist is hopeful we can make it 5 years with before we need to go back in but that may be optimistic, only time will tell. Larisa had a long conversation with the surgeon today and the short of it is that we are in uncharted territory. He will continue to have ecocardiograms evey 8-12 weeks.

Overall Levi is doing very well and growing quickly. He just turned 5, here he is at his 5th B-Day party. You can see highligts here.

http://vimeo.com/4719464

Tuesday, April 21, 2009

Results

Our hopes were confirmed in regards to the pulmonary hypertension. His pressures were normal, which is great news. It looks as though at some point between now and adulthood they will have to open him up again to enlarge the patch, as it is still creating some obstruction. The Dr. is hoping we can make it five more years before this needs to be addressed. Overall this is a good report and Levi has been doing well over the last few months gaining weight and height.

They've started

They took Levi back, they should be finished in an hour or two.

Friday, March 27, 2009

Heart Cath

Levi had a routine checkup today. His oxygen levels were the best yet at 100%. His pacemaker is due for replacement though and they want to do a heart cath before they go in. This has been planned from the beginning but we request your prayers. This will give us a better idea of what procedures may lie ahead.

Tuesday, January 27, 2009

Settling in

Well, after four days of recovering from jet lag and getting used to the fact that it's still winter here, things are starting to seem, well, normal.

I know there will likely be some ups and downs, but Andrew seems to be fitting in remarkably well. There is general squirming and slapping and an uptake in neediness as everyone scoots around to fit in the latest member of the family. Overall, however, comes the sigh of relief in a process and family complete after weeks of absences and lives in the balance.

For his part, Andrew is rambunctious, curious and affectionate. He's quickly made himself comfortable squealing down our driveway on four wheels, climbing trees and cozying up to the dog and cat. He's adopted his brothers toys, finds cooking endlessly fascinating and, tonight, ate broccoli for the first time with relish—"they are trees for eating," he announced to the rest of the tribe.

"Relish" is actually a good word to describe Andrew's attitude toward life thus far. All seems action and adventure. After more than five years behind the walls of Welcome Home, everything is discovery and delight. Short on English exclamations, he resorts to grunts and cries or, failing that, bursts into a torrent of his hybrid Lusoga/Lugandan.

So, yes the house is noisier, yes the laundry piles up faster, yes there are twice as many requests for apples cut, cups filled with water and shoe laces tied. But we have Andrew. And it's fun.

Tuesday, January 20, 2009

Thursday's the day

God willing, Andrew and Larisa will be heading home Thursday. Larisa received the DHL from the states just in time. Another day and she would have had to delay her flight. They will be touching down in Atlanta this Friday at 1. Thanks for all of your prayers.

Friday, January 16, 2009

The electricity went out last night for the first time since I've been here. With a flash and a fade and a brief chorus of "aaaahs" that could be heard around the neighborhood, we were plunged into darkness. Pretty amazing to me that we made it a week without a hiccup.

Andrew was in the bath and got a little nervous in the dark. With our fan out, you could also hear every baby cry and dog bark within a half a kilometer, so going to sleep was a little more daunting than usual.

We've been doing well, Andrew and I, but the transition from the orphanage has been an adjustment for all the adoptive families. Andrew's five, and there are three other four-year-olds that are now staying at Ebenezer. Needless to say there has been lots of boundary testing and not a few fits. We are all learning very quickly that you have to be as tough as the mums at the orphanage or you're not going to survive. But, hopefully, as a result, by the time we board our respective planes for home we will be the parents of reasonably orderly, polite and manageable children. Please us and the kids in your prayers. This is a big change for everyone.

Well, because of the MLK holiday Monday, I won't be going to the embassy until Tuesday (the papers I need have not arrived yet anyway) so will be cutting it pretty close on my return. In addition, I don't know if I mentioned this prior, but Andrew's aunt has gone north and her return is uncertain. Such is the way things go. Matthew's definitely ready for me to come home, so we're praying that all will be completed on schedule--even if it is in the nick of time.

Other than that, Uganda is warm and lovely, I'm falling in love with Andrew and the power outage last night gave me the most amazing view of a sky, thickly clumped with stars.

God is good.

Monday, January 12, 2009

On Schedule

We're going to be making an extra trip to the embassy this week or next. Matt had to madly scramble this morning to DHL some forms we'd neglected to complete, and we're also going to have to tote Andrew's aunt back to Kampala to prove to Mr. Flook's satisfaction that we're legit.

After that, it should only take a couple of days to get the visas, so we'll probably get out right on schedule.

It was a long day with Andrew. Up before 5 a.m.--I got about three hours of sleep myself, still dealing with the time change. He's is full of energy and decided to begin testing me in public places--particularly at one point during a tense exchange with Flook. Anyway, we survived, and it took him all of 30 seconds to fall asleep in what is now our room.

I learned today that Andrew's father came from western Uganda and his mother came from the north, which explains his broader mouth and upturned nose. He's a sweetie, and I think a good night of rest and a few days of a new routine will help us all settle in. I think his primary frustration, other than the fact that I'm not his daddy, is language. When he has something he really wants to tell me, he bursts into Lusoga (at least that's what I'm told he's speaking). And he's even started telling me the local words for things like rooster and napkin or fork or something like that at dinner. Anyway, I've decided to learn at least a little Lugandan (similar to Lasoga) in order to really get his attention when I need him to do something. Will let you know how that goes.

Saturday, January 10, 2009

Me and Andrew

Hey,
Got a very sweet boy sitting on my lap right now. We're full of Miranda cherry soda and an ice cream cone. He knew right where to go when we got the the source.

When I went to the orphanage this morning, he ran right over to me and grabbed my hand to go sit on the swing. I gave him a little toy airplane I bought. He seems to just like to be with me. I'm going to buy a Lusoga book so I can talk to him some more, but he's proud of the English words he knows and keeps asking about the names of different things. He's really bright. Although we're probably killing him with all this sugar. He's got a five-year deficit to make up for though.

I saw Dada. She is a sweetie and wanted to come on the walk with us. I talked with Rose for a while and she said you were very "annoyed" when you were there about the process. That made me laugh. She also said Andrew climbed to the top of the roof at the orphanage. Well. Must return Andrew for lunch. I think he is ready to come home with me, though. Maybe by tomorrow night.

Love you, call me later. Happy Sabbath. God is good.

Larisa

Friday, January 9, 2009

Arrival

Larisa has arrived safely. She had a nice visit with Andrew this afternoon and is settling in. She will be going to the Embassy Monday. William thanks she will be ready come home in 3-5 days (from Monday). We hope this turns out to be the case. Please keep us in your prayers.

Two other families just arrived. All the adoptees have to be heard as separate cases now so some of them will not have hearings till the 21st.

Wednesday, December 17, 2008

Tuesday, December 16, 2008

January 12

It appears that things are in order for Larisa to depart for Uganda on January 10 (arrive on the 12th) to finalize things and bring Andrew home. Keep us in your prayers. If all goes well it should be a short trip, 10 days or less.

It's a go. We think.

From garbled and broken communication this morning it appears we got the verbal ruling that we were hoping for today. We will know for sure later this afternoon.

Friday, December 5, 2008

Wait till next year

Post from Matthew this morning:

After three weeks it appears that we are not going to get any breaks from our judge. She won't make a decision on our case until the 16th. If everything were to go perfect I could wait it out and be home with Andrew for Christmas. But that would mean completing in three days what it has taken at least a week to accomplish in the past, and flights out around Christmas time can be uncertain. If we were to get delayed on any aspect I would be here till mid January. That is not going to work.

So, Larisa is planning to come over very early next year. Hopefully things should be in order by then, and it will be a brief trip. Keep us in your prayers. Thanks.

Thursday, December 4, 2008

Still waiting

Well, after a day of waiting to hear from the attorney there is nothing to report. Apparently he never got to see the judge today. We're evaluating our options at this point. Please keep the situation in prayer.

Wednesday, December 3, 2008

From Matthew this a.m.

Lunch:
I went to a "western style" deli today. Ordered a nice plate of lasagna and sat down to enjoy. Right out the window a young woman sifted through the dumpster looking for something to eat. The name of the deli was "Indulge."

Mistaken Identity:
On more than one occasion I have been mistaken for Jesse. He apparently had made quite a name for himself by distributing his surplus "Obama '08" bumper stickers to the locals. It is not uncommon to see a boda-boda drive by now with the "O" logo on the mud flap. A young lady stopped me and said, "I never got my Obama sticker." When I told her I was not the one handing them out, I am not sure she believed me. All mzungus look alike, but some more than others.

Please Pray:
Thursday morning at 9 (1 a.m. est) our attorney meets with the judge. If we don't get an early ruling it looks like I will be headed back alone. This is not ideal for me and not at all ideal for Andrew. Please pray for us.

Monday, December 1, 2008

A son

Today Matthew took Andrew back to the orphanage after a day spent exploring in the garden, climbing obstacles he was not supposed to, chewing on strange berries and splashing in the bathtub. The moms commented on how much he had changed since Matt had come. Andrew always used to look at the ground, they said. He is so much happier now.

Whatever happens in this uncertain process, little Andrew has a daddy. He doesn't have to hang his head anymore.

Sunday, November 30, 2008

Alone

Post from Matthew this a.m.:
The group is gone. It's just me, and Andrew. He has been really sweet. He likes coming over to the guest house and seems to be a well behaved little guy. His English is poor but he is a fun kid. A little sensitive and moody so he should fit right in.
Wednesday:
That is the day we are supposed to really know what and when things are going to happen. Keep us in your prayers.
Monkeys:
We took what was a fairly difficult hike yesterday through a rain forest. 3-4 miles of hilly terrain in search of red-tailed monkeys. We caught an occasional glimpse but no great sitings. When we got back to the van, drenched in sweat there was a troop of about 10-20 a few yards from where we were parked. They had babies and juveniles and did all the cool monkey things, like eating fleas off of eachother and leaping from tree to tree.
Out of place:
We took a "traditional" boat tour. "Traditional" meaning that there were no life vest and the guy running the engine spent a fair amount of time bailing water out of the boat. We stopped by a fishing village. We met a couple of Israelis who had been there for six months building a sailboat to circumnavigate lake Victoria (the largest lake in the world). The design seemed a little bit ill conceived. They placed a large, heavy cabin at the very front of the boat.

Thursday, November 27, 2008

Thanksgiving

The trip has been a real blessing so far. After five days of meetings--100 people or so crammed into a tiny church--nine people came forward to study for baptism at the final call. There has been just a real sense of the Holy Spirit's working in that church, and we hope the relationship between the Lenoir City Church and the Chomanga SDA church will not end here.

Here's more details on the past couple of days from Matthew's emails:

"Before the meetings I had a chance to visit Timothy's grandmother. I enjoyed some roasted peanuts and fresh sugar cane.


"We visited a home for disabled children. It was a difficult experience. Several of the disabled were there as a result of malaria, the stories were all tragic.

"Jesse has had a bug but seems to be doing better.

"Today we visited the largest sugar cane plantation in Africa. We are not sure of the mileage but it has 52 villages on-site. It was a disturbing picture of what the pre-civil war South may have looked like. They import workers from long distances so they cannot afford to leave. The conditions were as you would expect.

"Andrew is doing well. I had to keep him from crawling into a chicken coup in the village the other day. He likes ice cream and orange Fanta. We are hoping to make progress early next week. Please keep us in your prayers that things will go according to God's plans."

Today is a day to be thankful. We have been given so much. Grace has been poured out on us from heaven. And there is no greater blessing than passing on what we have been given to the people God puts into our lives. In a world of fear and darkness and sin, it is so good to know that God's love and light are greater. It is so good to be in His care.

Happy Thanksgiving. 



Monday, November 24, 2008

Note from Jinja

We have been day to day on Andrew but it now appears that it will be next Tuesday before we can hope to see any real movement. The judge is out of town until then. When she returns, we'll call each day to see if she will make a ruling before Dec. 16 on our case. As usual, it's wait and see.

The group arrived Friday and everyone is enjoying themselves. Jesse has a slight fever and spent this morning in bed but is feeling a bit better now.

We took a tour of the Iganga SDA school this morning, and they are trying to start some new education programs there that incorporate learning a trade into the curriculum.  It seems a really thoughtful idea that would go a long way in addressing some of the issues we see here of so many with lots of schooling and no work.

Our meetings in the village are going well and quite a few people have been coming. It is an experience to be interacting with people whose lives seem so different than ours. Their homes have no power or road access, in many cases they are mud and thatch. But, despite all that it's amazing how much we have in common.

Sunday, November 23, 2008

Getting busy

Well, after one night of sleep, the mission group got right to work visiting the Welcome Home orphanage after attending church Sabbath morning and then holding the first of five evangelistic meetings in the afternoon. (To all the Lenoir City church members, my apologies -- the meetings actually started Sabbath afternoon.)

The first was a bit rough, but the group rallied, put in lots of prayer time and today's second meeting went really well. They are all having a big time. The group met Andrew yesterday afternoon, and he especially took to my dad, following him around the orphanage grounds.

I'm going to try to get them to send some photos soon. Please keep this week in your prayers, especially the meetings.

Friday, November 21, 2008

Day in court

Well, we've been busy on both sides of the ocean and haven't been keeping up with the posts. Matthew went to court yesterday morning with Andrew. He got quite a grilling. Amog the accusations were that we didn't have enough income, that the five children we already had is a big family even by Ugandan standards, that we were trafficking children, etc. Matt left the hearing pretty discouraged. The attorney, on the other hand, felt things went quite well. There's the Ugandan court system for you.

The judge said she would give a ruling on Dec. 16. We were hoping Matthew could come home before then. It will take about a week after the ruling to get Andrew's passport and visa. But the attorney thinks there's a good chance she'll make a decision sooner than that. Nonetheless, we're preparing for the long haul. Our biggest concern is that everything be complete in time for Matt and Andrew to come home by Christmas, because everything in Uganda shuts down for a couple of weeks during the holidays.

Matthew was feeling better today because company had arrived. A group from our church, along with my Dad, will spend the next eight days in Jinja volunteering at Andrew's orphanage, conducting a series of meetings, visiting schools and doing some medical work. They showed up exhausted after a 48 hour trip (they spent one night in Addis Ababa, Ethiopia), but excited.

Will keep you posted on their activities. Please keep all of us in your prayers.

Monday, November 17, 2008

Bicycle built for three

Andrew, Steven (another boy at the home) and I took a ride on one of Welcome Home's new bikes. With one wheel in the back, 2 in the front and a large box for passengers we garnered quite a bit of attention. Speaking of bikes, I met a couple who were biking from Addis Ababa to Capetown yesterday. They hope to be done in March or so. They are raising money for a hospital in Ethiopia.

Andrew is really getting attached quickly, much moreso than John or Levi did. I stepped into the office at the home yesterday and when I came out he was standing in the hall with tears on his cheeks. I worry about him through this process as it can be a bit bumpy. We hope to confirm our court appearance today. Please keep us in your pyayers.

The rest of the group will be coming over Wednesday. They are in for quite a trip. I think they will enjoy it.

Sunday, November 16, 2008

Getting settled

Post from Matthew this morning:

Had nice day yesterday. Visited the village church where we will be having some meetings next week. There we were, in an African village, dirt floor, no glass in the windows, crude wood benches and they started the service with a "mission" story. That seemed a bit ironic.

Had a great afternoon with Andrew, he is a sweet kid. His english is not very good, and he has a real aptitude for "destroying" things I have been told. He is a creative kid who loves to draw. He finds pieces of brick and charcoal and works on the pavement.

Hope to see some movement tomorrow in regards to proceedings.

We had a nice potluck today. Me and about 10 kids who accosted me on the street this morning. I bought a couple of loaves of bread and peanut butter and me and one of the older kids (Moses) made an assembly line while they waited patiently. They were disturbed by the fact that a few drops of peanut butter were wasted when I dripped them in the dirt. One of our goals while here is to try to find some opportunity for these kids. We have some ideas but nothing solid yet.

Also, had a chance to visit Tim's aunt and sister this morning. They are doing well.

Keep us in your prayers.

Saturday, November 15, 2008

Arrival

Matthew can't post from Uganda, so I'll be filling in from time to time on his progress.

He arrived in Kampala yesterday afternoon and visited the attorney's office. There is as yet no court date for Andrew's case, so please keep this in your prayers. The judge wants to reschedule for December, but they are hoping to find a different judge to hear them on Monday or Wednesday.

This morning Matthew went to see Andrew. He was wary (and according to the house moms, a "very bad boy,") but Matthew said Andrew sat right next to him and watched our family movies on the iPod over and over again. Pretty soon, he'll be in them.

Tuesday, November 11, 2008

What's Next.


Andrew.

On Wednesday, November 12 I set out for Uganda. God willing, I will not be returning alone.

Please keep us in your prayers.