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Archive for September, 2015


Eli slept well. I did not.

I lost track of how many times I woke up, and why. Like the night before I turned off the white noise app around 1. At some point I woke up to the sound of splashing. I wondered if perhaps a street sweeper had gone by. Eli woke me up for water. Another time I woke up, stretched and suddenly got cramps in my back and one leg. Around 4 I noticed that the A/C turned off. It finally got down to 75 degrees! I could faintly hear the periodic chirp of that lousy smoke detector whose battery they couldn’t or wouldn’t replace. I kept thinking about Eli and how he’d do on the trip home.

Around 6:15 I gave up. This is when I realized the splashing was a rain storm. I peaked through the blinds (did I mention they had no controls, so initially I had to close every slat by hand?). This may change the airport equation. There isn’t much rain in LA so they may drive as horribly as Tucsonans.

I had gotten dressed when Amie called. I kept it brief because I had plenty to do. I got Eli up. He was in some pain after not moving much all night. But he went to the bathroom and then I gave him water and his antibiotics. We got him out of his pjs and into shorts and a shirt to travel. This was when he moved, quite quickly because he had to throw up again. Oh … this did not bode well. I wondered if this had to do with El Niño I heard about.

I had to head downstairs to get cleaning supplies. As I was heading down to the office I saw the buckets in the center of the common area. Apparently the roof had a leak. But it was still raining, which did not bode well. Back upstairs I pulled the sheets off the bed. I noticed, with relief, that there was very little blood on the towel I placed over his pillow. Last time there was far more. I was also relieved to know he hadn’t thrown up again. I cleaned the bathroom and gave him some water. I needed to get the trash to the receptacles so I drank the carton of apple juice we’d brought from the hospital. I figured that might be a bit much for his stomach.

After returning from my errand, I got him in the rundown wheelchair. Off to the rickety elevator when thumps when it starts making you feel incredibly secure. He waited in the commons area while I went to retrieve our luggage- my briefcase, his backpack and a small suitcase. Then to the office to check out and pay the “suggested” donation. In the past they have checked the room before returning my deposit. This time it was simply, did you strip the beds? Okay.

The van was only a few moments late so we got in. I pulled up the stool thinking we were the only people going. What a fool! He came back and noted, with frustration, that another family had called at the last minute but weren’t ready yet. They had an 8 am appointment at the hospital. This was on the way to the airport, but not a main road. So … we waited. It was at this point that I wished I had that jacket Jadon told me to bring. It was a bit cool with the rain. Then I apologized to Eli, thinking I should have given him the pants to wear so he’d be warm. He did have a sweatshirt on so I wasn’t a completely incompetent father. Yeah, we were still waiting.

Finally a guy showed up with a little girl in his arms. I thought we were ready to go. We weren’t. Still waiting for his wife and daughter who finally arrived. Our 7:30 departure morphed into a 7:45 departure. This was not looking good.

It looked worse when we entered traffic. It would NOT be a 5-minute drive to the hospital. It was snarled like nobody’s business. Anxiety raising to Def Con 2. Since Virgil is only one lane in each direction he went a block to a wider road, but that didn’t seem to help much. While we sat at a light I made a few observations. LA must have an aversion to left turn arrows, which made turning left in such situation very difficult particularly in light of pedestrians sauntering across roads. Second, the Metro stop had a fancy looking toilet building. Curious I asked and it was relatively new.

That 5-minute ride took about 20. We were now about 30 minutes behind schedule for the 30-minute ride to the airport. But the driver needed 5 minutes to run into the hospital. Def Con 3.

Sooner than it felt, we were back on the road, and caught in traffic. Every. Red. Light. Starting to think we might not make it I asked Amie about other flights out. Not good. 10:45 (only 40 minutes later) but thru Vegas instead of our nonstop. There was a 3, but also thru Vegas. Eli doesn’t do well in Vegas because he gets overstimulated by the lights & bells. Perhaps being post-surgical this wouldn’t matter but the thought of a layover with a post-op kid was not appealing. This is when I started praying that the flight would be delayed. So far it was scheduled to depart on time.

I was talking to God about it since talking to the driver could do no good. My control idol was very unhappy and I was trying not to stress out. I absolutely hate it when I have no control over anything. This was one of those times. “Help me, Jesus, to trust in your love and power no matter what happens!”

Finally we were on the highway. An earlier glimpse had not been good. We were in the HOV aka Fastrack lane (you pay for this privilege, well the hospital did), and finally making good time. My anxiety level began to go down.

But then we hit the bridge between the 101 and 105. Fastrack no more! Backed up was more like it. It was moving but merging onto the 105 was not easy. Eventually we got moving at a good pace. I asked how long it normally took from this point to the airport. 10 minutes was the answer, which would put us at about 9, an hour later than expected and 35 minutes before boarding. There was still a chance, but possibly a Lloyd Christmas chance.

As we drew near to LAX the traffic came to a new standstill, again. I kept watching that clock as it slipped past 9 am. Oy vey!

Thankfully Southwest is the first airline you come to. In light of the traffic this was such a happy sight to my eyes. It was about 9:10. We had 25 minutes, with a hobbled Eli, to get our vouchers transformed into tickets, a wheelchair for him, thru security and to our gate. I was … stressed.

We were dropped off by the curbside check-in. We got in line, Eli quite painfully. Then I spotted the wheelchair check-in on the far side. Off we went, with Eli hobbling along while I had care of all 3 pieces of luggage. We must have looked pathetic but he was a trooper. Getting a wheelchair also meant we got to use a different sky cap station. This jumped us to the front of the line which was obviously fortuitous, to say the least. If I hadn’t been so stressed out, I’d have been more thankful that Eli had kept that water down.

The other great thing about a wheelchair is that you go through security more quickly. This time it was a bit odd. Here they are checking for explosive residue on the hands of a child who had surgery the day before, AND a wheelchair owned by  the airport. Of course they had to open the backpack and examine his medications. I always use injured children to smuggle things on airplanes!

Our gate was the 2nd gate! We arrived at ….9:35 ready to board. And had to wait. The plane we were going to fly was late arriving, and they hadn’t de-planed yet. I could catch my breath and call Amie. Last time we had plenty of time so I bought him yogurt to eat with his pain meds. No such luxury now, so food and med would wait. Caffeine too. We were the only pre-board on a half-full flight to Tucson, so we sat in the front row, which we had to ourselves. I read Lawhead and he played Angry Birds Star Wars on the iPad (he was obviously feeling okay).

It was an uneventful flight, and the family was very happy to see us.

On the ride home I was telling Amie about my struggle with control and stress that morning. “Well, this will add to it.” Apparently, our washer which was awaiting its 3rd new mother board decided to exhibit a new problem as a result. Usually is doesn’t turn on. That morning it turned on and was on mid-cycle when they heard a not-so-good-sounding noise. Heading upstairs they discovered the door had opened and water was gushing out. They got the machine turned off but used just about every towel trying to get the water up. If we still lived in FL this would be no big deal. The washer was in the garage. This house? Big deal. Not only is the washer inside, it is upstairs (as you may have caught from the earlier statement). We counted 10 water spots in the ceiling downstairs as a result. Thankfully they were home! If not, the washer would have kept running and would have flooded the upstairs causing lots of damage. Big props to Jadon who kept her head, and got the other 3 kids to help clean up.

We are grateful to be home. We are grateful for Eli’s excellent surgeon. We are grateful for friends who let us use their machines for laundry. We’re just plain grateful.

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It was a restless night sleep for me. I think Eli slept well, but I kept waking up. I had left a message for Amie to call me at 5 to make sure I was up. I turned off the white noise app on my phone around 1 since I have a hard time sleeping with it on. Around 4:30 I gave up. The temperature of the room was only 77. The A/c had been running for over 5 hours and the temp had only dropped 7 degrees. Because it had run constantly all night I didn’t hear the “chirping”.

Around 4:40 Amie called. She’s one of those if you are on time you’re late people, but this was crazy. She’d not slept well either. The relaxing sound of my snoring was not there to assist in her attempts to sleep. While we were talking my alarm app worked telling me to get up. I was not ready for the day, but it had arrived anyway. Eli and I got dressed and went downstairs.

The shuttle was on time, but we were not the only family heading over to the hospital from the RMH. Two others were in the shuttle with us. It was a fairly quick ride up Virgil to the hospital. Registration was at 5:30 so we were early. We sat in the lobby and I started reading a book on Missions that someone had wanted me to read; I would read half of the book through the course of the day.

When registration opened we signed in second, and grabbed a seat until Eli’s name was called. No reading this time as the tired & anxious Eli sat in my lap, played with my hands and arms and generally caused “trouble”. Perhaps they called us in the order of the scheduled operations because we weren’t second. Not that it mattered, we weren’t going anywhere soon. His was tentatively scheduled for 1 pm. But sometimes they changed the order. Last time we were first, but the cadaver bone was not in yet due a storm, so Eli ended up not having his surgery until 6 hours later. I got more paperwork in Spanish.

From registration we proceeded to the nurses’ station and were shown our assigned room. The staff was focused on the kids who were up first, so Eli was able to relax, in normal clothes. I returned to the book I had been reading. A little while later on of the staff wanted to know if he wanted to watch a movie. Soon the cart with a TV was in our room so he could watch Meet the Robinsons. I continued to read, and looked over prospective curriculum for our women’s ministry. My initial attempts to get breakfast were thwarted as the cafeteria did not open until 8. Yeah, I was shaking my head. So I ate some pumpkin bread and trail mix that Amie had sent with me. Tired, I took a short nap on the bench surely bothering others with my snoring.

When it was time to put his gown on, the pent up anxiety came out. Lots of tears. Then the movie resumed with visits by various doctors to talk with me. The nurse came in with paperwork to fill out- the main one being in … Spanish. This one I had to ask for a replacement since I couldn’t fake that one. Just after 10 it was time to go. Not much warning as he went to empty his  bladder. More tears as they wheeled him to pre-op. There we sat as I held his hand and talked with the Asian nurse, starting by asking if she was bilingual or trilingual. She lamented that she only knew English and Spanish, the latter since so many of the patients were Hispanic. Eli was the only non-Hispanic patient I saw that day. When I asked if she was first generation or second generation Filipino-American, she was uncertain about that. It confused her. So she looked it up- 2nd since she was born here. I noted that most of the nurses on the floor were Asian, and she said most of the clinic nurses were Hispanic. I wondered, aloud, if that means the Anglos didn’t want to learn Spanish.

At about 11 they wheeled him away after a quick prayer for him. The cafeteria began serving lunch at 11, so I could get some real food and my daily dose of caffeine. Today it would be a rare Coke. I learned, the hard way, on the first trip to bring cash. The cafeteria only takes cash, and I usually don’t carry much or any. That day I could afford breakfast before breaking the rules and walking to a Vietnamese place over a mile away. This time I had plenty and had chicken, wild rice and broccoli to go along with that Coke. Then back upstairs to wait. I read some of the Lawhead novel I’d begun on the plane, which I realized I had read before. I also walked laps in the corridors to get my steps in for the day. I also talked to one of our women’s leaders about the curriculum I looked at, and our treasurer about a problem. So it was still a work day, albeit a short one.

While walking the halls I ran into the surgeon who told me it went well and I should be paged to go into post-op soon. I walked some more. One hallway was about 100 steps long so I started doing the math in my head to see how many times I’d have to go back and forth. Finally the pager went off. I was expecting him to be a mess. In the past he had been. This time he was peacefully asleep. He seemed relatively unphased when he woke up. In retrospect, they may have given him a bit too much anesthesia. He hadn’t even gotten the obligatory popsicle to sooth the pain and provide some fluids before we went back to the room.

So began the trepidation. The first time he had surgery in this hospital it had been a very long surgery. So after my aforementioned trip to the Vietnamese place, while I was settling in to eat dinner, he started to vomit up the blood. When I went to help, he puked on my shoes. The night after the second surgery he must have been so out of it that he peed on the floor of the bathroom at RMH. I had the pleasure of cleaning that up. So, I was anticipating some disaster with some bodily fluid of some sort. It wouldn’t happen until after dinner, but I wouldn’t be disappointed. You will be, because I’m not telling you what happened.

All seemed to be progressing okay. He pretty much slept until 4 or 4:30. He got up and went to the bathroom. I stopped him before he peed on the floor- whew! He had some water and jello. I had been downstairs to set up the shuttle pick up the next day to bring us to the airport. The supervisor was going to set the time for 8, but I asked for 7:30 (praise the Lord, as you’ll see why, eventually). The fact that we weren’t leaving before 5 set in so I went down to get dinner knowing that once we got to RMH there was no way I was leaving him to get dinner. I didn’t realize it would just be the leftovers from lunch. So I got the last pork chop, more wild rice and some crunchy Cheetos. There were no good looking veggies this time.

When I got back up he was eating dinner by the window. This was looking good. Until he vomited. He had enough presence of mind to get himself to the toilet. This was the first of 4 or so times he’d throw up that night. Then the fever started. We had this the last time too. I would hold a wet towel on his head to help him cool down. So he watched Meet the Robinsons again as the sun faded to the west. This time I watched with him.

The fever seemed to subside. It looked like we were heading out about 8:30. The cab was called, he was dressed. We made it to the elevator and were going to the first floor when his started shaking, shivering. The fever was back. And so were we, to the room. More cold compresses and we started watching Toy Story. It began to feel like we’d never leave. They weren’t talking much to me. I wondered if we’d have to spend the night. If so, when would I get our stuff and clean our room at RMH. See how my anxious mind can work. It is days like this when you realize how little of life you control. Shortly after Woody and Buzz ended up in Sid’s house we tried again. But my hopes for an early night were crashed upon the rocks of unpredictability.

After another quick cab ride we were at the RMH. I didn’t know if the office would be staffed. Fear was creeping into my heart. I have a kid who can only hobble about 15 feet with me on a dark street, and Monday is the day they reset the locks and I don’t know if the key will work ……

Unfortunately I picked him up the wrong way when getting him out of the cab. I put too much pressure on that hip they took bone from. Poor little guy was in a lot of pain. But we were quickly buzzed in and I got him on a couch. The wheelchair I’d requested was in the unattended office. I really didn’t want to carry him around since my back was already bothering me. The office staff showed after I’d brought our bags up to the room (the key worked! unlike last year when I did carry him up). A dose of anti-biotics and pain killers later he was fast asleep. I took a much needed shower. Once again I rejected the idea of TV since it was about 11:30 again. At least I could sleep in- so to speak. But, needing to clean the room I figured I’d better get up at 6:30. 7 hours was sure better than 5.

Day 2 …..

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Why did we adopt a child with a bilateral cleft lip and palate who would require quite a few surgeries? We have been asked this question, and asked it ourselves periodically. We can’t imagine life w/out Eli. Were it not for choosing a special needs child, we would still be waiting to adopt from China, and obviously wouldn’t have an important member of our family.

He has now had at least 8 operations. We know he had at least 1 while still in China to repair his lip. While we lived in FL he had 3: to construct a palate, replace ear tubes and correct a fistula in his palate.

It was during this time frame that he started speech therapy. His first therapist was “fired” after about 2 sessions. He told us to teach him sign language because no one would understand him. I’d like to find this man and play him a tape of Eli talking today. Don’t always buy the worst case scenario that “experts” present.

Since moving to AZ, he has had 1 surgery here (to repair an ear drum) and 3 in CA (elongating his palate to help speech, and 2 bone grafts to repair clefts). This is the story of that final (?) surgery.

While we’ve known it was coming, we weren’t sure exactly when. And when we knew when, there were still lots of details we didn’t know. Thankfully we got a travel voucher from Southwest through the hospital to fly to Los Angeles for the surgery. Since he had a hard time with the earlier flight (left during afternoon rest time) which experienced a delay on its layover, we decided for the later non-stop. We hoped he’d nap and not become the crazy boy he can be when he is tired. We did not know where we were staying until Friday afternoon. Cutting it so close can reveal how much of a control freak you really are.

Like any normal Sunday we had church. That means I left the house around 7 am to do some last minute preparations. I taught SS, led the worship service and preached. Afterward we interviewed a woman who is joining the congregation. This meant that I got home later than usual, about 2:30. I was leaving at 5, needed to eat and couldn’t get packed because Asher naps in our closet (long story). What I really wanted was a nap. My hopes of Eli napping were dashed upon the rocks of his nervousness. I thought we should “drug” him, but Amie didn’t want to give him melatonin the day before surgery.

Then the sky opened up. We’d had a decent amount of rain lately but this was the mother of monsoons. At least this year. It came down hard and our backyard had trouble draining. This did not bode well for the streets and washes. I was hoping traffic would not be a snarled mess, but didn’t anticipate this when setting up the departure time with one of the men from church. Amie and the other kids were going to community group. I thought we’d have time to stop and grab a quick bite but reassessed and decided we should just go to the airport since the flight had not been delayed despite the weather.

We experienced little to no problems despite all the rain. We got our boarding passes easily (no line) and quickly got through the vaunted Tucson TSA security. We were almost through when I head the announcement: our flight had been delayed for about an hour. We now had about 2 hours before boarding. The food options at Tucson International are limited. Since we had 2 hours to kill, it sounded like a good idea to go in the sports bar and watch the game while eating. Being the incredible father that I am, I allowed him to get the loaded fries for his final sold food meal for about 6 weeks. That is how I roll. I decided on the garlic and Parmesan wings, hoping they were not too saucy. No such luck. Sauce was everywhere and napkins were scarce. There was also no small amount of cheese on his fingers either. I did enjoy listening to 3 or 4 tables of older African-American men watch and talk about the game, analyzing every play. I’m not sure if they were friends, but there was plenty of give and take.

Due to an impending intestinal requirement we left the sports bar early. This was fortunate because I couldn’t hear announcements in the sports bar, and our delay was now only about 30 minutes. Now it was hard to hear because of an extended family waiting behind us, spread out and talking like they were across the room in a foreign language.

The flight to LA itself was uneventful. But the “fun” was just beginning. We did not check baggage so we were at the taxi stand quite quickly (9:30ish) and lo and behold there was no one in line and the right cab waiting for a customer. We piled in and I mentioned we were on a voucher and he should call the dispatcher for verification. The rather large and unattractive cabby was not too interested. I went to show him my info but instead of reading it he merely declared “this isn’t a voucher”. I figured this would not end well and got out. The next guy in line was also unsuccessful in procuring his services, so it wasn’t just me he hated.

The guy directing the cabs talked with me, and he notified the cab company in question about our need. So began the seemingly long wait for the right cab as tons of the wrong cabs flitted through. I was amused by one guy who walked by taking selfies of himself. I’m not sure why selfies of himself leaving the airport were so important, but he reminded me of a woman I sat next to in Baltimore recently who kept taking selfies to get the perfect one with her waiting for her flight with her large headphones around her neck. Just wasn’t working, but I didn’t have the heart to let her know this.

Finally the right cab arrived to take us away. The airport employee let him know the number of the cab that refused service. This guy knew where the hospital was. He zipped right along, and talked with the dispatcher for verification as he drove. Then he let us know that the other cabby was known to only like certain parts of town and would refuse fares to places with which he was unfamiliar, like where we were going. The guy driving us liked the route, thinking it was a good fare ($50+ to the hospital and another $12-15 to the Ronald McDonald House where we were staying). We made good time with him at the wheel. It was when we got to the hospital that things bogged down, again. It was already after 10 pm and we had to be ready for the shuttle driver at 5 am. Every minute wasted was a minute of sleep I was not going to get that night.

The night watchman, who has been there at least since before my previous visit 6 months ago, apparently can’t remember how to do the taxi vouchers (or spell my last name). The cab driver was getting frustrated with him. I was getting frustrated but knew that I needed to facilitate this or I should just sleep on the floor. He had to verify the additional leg of the trip with the company. From this side the conversation I realized they were going to send another cab. So I made sure he explained we had a cab. This whole thing, feeling like a 3 Stooges episode took about 3 times longer than it had to. My sleep time was rapidly diminishing.

Eventually we were back in the cab and on our way. It only took about 5 minutes to get to the Ronald McDonald House but it was looking very dark. The security door, however, was not fully closed so we went in. I could not sort out where to office was because I was expecting an office worker there. Foolish me! Then I realized I had stayed here once before when a friend and I brought our kids to appointments. I remembered the room were stayed in was pretty nice. While waiting for the night clerk to arrive I began to hear it, or rather notice it. “chirp” long pause “chirp”. A smoke detector had a bad battery. I didn’t want to hear that all night. I was very much hoping that we would have one of the rooms across the courtyard like before. So when the clerk showed, I noted “I hope I’m not near that.” To which I learned I was though she acted as if I wasn’t. We were on the second floor near the corner but still within range of the periodic “chirp”. That could get old, I thought.

Check in seemed quite easier than before, except for the form in Spanish, and soon we were heading up to the room. Whereas the other room had been nice, this … wasn’t. The A/C was off. Off, I say and it was 84 in the room. Eli spoke up “this room smells funny.” Yeah, there was no denying that. Sniff, sniff. Probably hint of urine. I set the A/C for 74 and hoped for the best.

When we had stayed at a different RMH in March, I noticed the next morning that the clock was about 50 minutes behind. This room … had no clock. I had to rely on my aging iPhone that is occasionally rebellious. Siri doesn’t like me, and I think she’s out to get me. I think she may have deflated the balls in the AFC championship game to initiate Deflategate. Eli needed a shower so I went to help him get it ready. It was then I realized it was Hobbit-sized. This was not shaping up to be a great stay. But we’d essentially only sleep here. I got Eli to bed, contemplated watching TV for about 10 seconds and got ready for bed. He wanted the white noise player on so I picked one of the rain storm options to lull him to sleep. It didn’t take long. I set my alarm and went off to a restless, short sleep.

The first day….

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It is hard to believe that Micah and Asher joined our family 3 years ago. Time flies when you are really busy. Much of that has been fun too.

Micah has done well with most things. Most of the time she is laughing and smiling. She still loves to dance, often while looking at herself in a shiny surface. We can’t seem to wean her from her version of twerking. We tried to channel that with acro at the home school co-op last year. She did great. She was a little worried about the recital at the end of the year, but did a great job. She is reading well, but still prefers to look at pictures over actually reading. Math has been like pulling teeth at times. She is getting it slowly. Much of her crying involves math.

She plays with Eli most of the time: Littlest Pet Shop, stuff like that. She and Jadon will play with their American Girl dolls. She wants to start playing an instrument but finding the time and money isn’t always easy. She enjoys game day but has not expressed a burning desire to play a sport.

She goes to BSF with Jadon and Eli. A family friend takes them. She did make a profession of faith at a VBS one or two years ago. Not quite connecting with everyday life yet, but that is true for plenty of adults. She seems to have better recall than Eli when it comes to the Catechism.

Amie is getting the hang of her hair. It took less than an hour this past Saturday. Periodically she gets braids from a professional, spending some time with another girl and her mom. This means she spends time with people who don’t look like us. We’ve also gotten to know a military family who has a girl Jadon’s age. There have been dinners hosted by both families. When Amie and I went to a wedding in Florida this past June, the girls stayed with them. They had a blast. We’ve wondered if it felt strange for Jadon to be the only white person for a few days. Race is kind of like sex, when they want to talk about it they are probably ready to talk about it.

Asher is growing up. He’s often playing with Eli or Eli and Micah. At times he plays alone while they do school work. He’s not wild about that at times because he wants to make noise and they are trying to concentrate. He is a silly boy. At times he still struggles with his emotions. We survived a bout of tantrums. He is starting to do some school work. He still goes to BSF on Tuesday mornings with Amie. Apparently he made a friend there. This year at VBS he made a profession of faith. He has started to talk at Sunday School, and as long as the other kids aren’t there he sits quietly during the worship service. Yes, the others are scattered throughout the sanctuary where they are generally better behaved than when seated together with Amie. I think it is the “together’ part that is the problem, but you never know.

Eli has had one surgery since our last post- a bone graft for his upper jaw. Soon he goes for his next bone graft. Maybe it will be his last surgery. He is still as rambunctious as ever. He would like to study marital, I mean martial, arts, but that will have to wait until after his clefts are repaired. He enjoys reading on those occasions that he’s quiet. In one of those oddities of life, his printing is atrocious but his cursive is quite good and legible. He is making good progress with his speech therapy.

He also did acro. For the first few classes he sat under the table because he felt foolish. Yeah… He did pretty well. He didn’t freeze up at the recital so we are proud of him. He has a decided lack of rhythm unfortunately.

Jadon is growing up so fast. She is the animal lover. She has gone through 2 fish, and the 3rd, Deep Purple, may be the last. At least until she changes her mind again. She petitioned us for a hamster for about a year. He prayers were answered abundantly as another home school family was giving away 3. She is loving it, but my office will never be the same. She made her public profession of faith before the church recently and now partakes of the Lord’s Supper each week.

Everyone seems to be doing well. Just the usual sibling stuff and silliness.

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