Wednesday, April 27, 2011

My Article Published!!!

Each year, there is a special edition of Lexington Family Magazine called "Exceptional Family." Guess who's exceptional family is in it this year!
(There's a zoom in/out bar on the bottom left corner, and you can make it full screen by clicking on the white box in the bottom right-hand corner.)

Monday, April 25, 2011

Levi's ENT Appointment

I was prepared to hear that Levi might need a sleep study, that he may need his tonsils and adenoids removed...totally braced to hear the word surgery. What I did not expect was to hear that Levi probably has acid reflux, and I sure didn't expect it to be so complicated to figure out when or if he needs surgery. The ENT put a tiny scope up his nose and was able to fully see his throat. His vocal cords and larynx were so swollen & inflamed that she can't really make any decisions right now. First we have to get him on Zantac to clear it up. She also confirmed that he has a large tongue and a tiny airway.

I thought it sounded so weird that this kid who never throws up could have acid reflux, but I met another mom there who's 4 yr. old daughter with Ds had the same problem. Her daughter was actually swallowing it rather than throwing it up. Maybe this is a low muscle tone issue. I don't know. (Side note: I met the mom b/c Adam saw her two little girls in the stroller & decided he needed to bring them each a book from the waiting room library. Such a charmer.)

The doctor was also very concerned about him getting pneumonia at such a young age. She said that's not typical. This is someone who specializes in Down syndrome, too. She wonders if his food is going down the wrong pipe. So I have to call tomorrow to schedule a swallow test, where he will have X-rays. We will go back to the ENT after the test.

At that follow up appointment, we will also be given instructions for doing a sleep test at home where we will monitor his oxygen levels at night (for sleep apnea).


I liked the doctor's no-nonsense, direct approach. She told us what she found and what she was going to do about it and all the steps that would follow. No wishy-washy, wait and see stuff. She was all business, ready to go, & I loved it. I was so glad Wes was able to be there, too.

Thankfully we had a fun play-date planned directly after the appointment. It was a nice, fun distraction. Adam couldn't wait to see his beloved Aunt Tammi, and he had a blast. Plus he got to ride the train at the mall. A true delight for this sweet boy.
(Notice the passers-by in the background of this picture? That just makes me laugh!)

Sunday, April 24, 2011

First Day of the Week

In the last week, the roof started leaking, Wes was rear-ended, I had a flat tire, we worried over tornadoes, and more... I am thankful for the beginning of a new week (and to all our friends and family in the St. Louis area: We are so grateful for your safety).

love that bed head!

sharing some candy with Thomas the Train

Although we don't celebrate Easter as a religious holiday, we honor Christ's resurrection every Sunday, taking the Lord's Supper on the first day of every week (Acts 20:7). We use the Bible as our guide for worship, and go by its examples and instructions. The Bible doesn't make reference to the early Christians celebrating Easter. We enjoy some of the secular traditions (like candy from the Easter Bunny), and try to keep our focus on Christ every single day. We do not make any one time of the year more commemorative than all the rest. He deserves all we've got EVERY day, and those clouds could open up any minute with the sound of trumpets! Enjoy your weekend, and celebrate what He has done for you ALL THE TIME.

I'll post something tomorrow after Levi's ENT appointment :)

Wednesday, April 20, 2011

Roadside Assistance

Levi's follow-up appt at the pediatrician's office was this morning. His chest X-ray was good, and the pneumonia is completely gone. Monday is our big ENT appt.

Even though the doctor's appointment went well today, getting there was a bit of a problem. We went out the the car, and I was disappointed to find a flat tire. Adam knew just what to do, though! While I stood there thinking, he grabbed the air pump we use for bicycle tires and basketballs and went to work.

What a sweet little helper! He really thought he had it all under control!
(Now that the tire is fixed, I should have him wash the car!)

Sunday, April 17, 2011

Exciting Flights

I got a few scrapbook pages done on my flight home tonight, and I got to watch "Thunder over Louisville" from the plane, which was super cool. It is the largest fireworks show in North America. (Today was the kick off for the Kentucky derby.)

My more exciting flight was yesterday. I landed in Jackson, MS just a few hours after tornadoes touched down there. I have flown quite often for the last 11+ years, and that was the second most turbulent flight I have ever been on. People were gasping and shrieking, and I had to put my laptop away because I was afraid it was going to fly out of my hands. The pilot got a round of applause when we landed.

Ahhh...I am happy to be home!

Thursday, April 14, 2011

Brotherly Love

These brothers are so into each other lately. It is precious. Up until now, Adam was too busy in his play to be concerned with a baby. But lately, he has been hugging on Levi, talking to him, and showing him things.

In the car the other day, Levi was babbling, and Adam asked, "What are you saying, Wee-dye?" The question was followed by silence. Then I heard Adam sigh and sadly say, "Mommy, he's not telling me."

I had to make a trip to the grocery store today & had Adam in the cart and Levi strapped to me in the baby sling. At one point, people were stopped in the aisle laughing with us while Adam repeatedly kissed Levi on the cheek and Levi batted his eyelashes and giggled at his big brother.

Here he is showing Levi how to spin the toy on his walker.

Then he decided to take brother for a ride.

As you can see, it was a beautiful day. We enjoyed playing outside while Wes mowed the lawn.

I was experimenting with my camera and am disappointed that these are so blurry, but his expressions are too cute. I still had to share. We grilled hot dogs for dinner, and Adam ate two of them!

Monday, April 11, 2011

Hello Again!

We've been playing catch up at the house after being gone most of last week. Levi is still sounding bad off and on...some coughing & some wheezing, but the inhalers seem to be doing what they're supposed to for him. Today he was clapping with his hands in the air while jumping in his jumper, and he has been hitting himself in the head with his thumb while he has fingers spread apart (That's the sign for daddy, in case you didn't know).

I never did take the time to mention how impressed I was with Adam during all the commotion last week. He went with me to the initial doctor's appt. Tues. morning, to another appt. that afternoon, and was with me at the hospital for a few hours before leaving for his grandparents. He was so well behaved. Since we were in the pediatric wing of the hospital, there were a lot of kid friendly touches. We had a small table and chairs in the room, and there was a room down the hall with boxes of activities. He played Play-Doh for a long, long while. He cut out 17 gingerbread men with a cookie cutter and enjoyed playing with them. There was also a bin full of sand and shovels, which he really liked. Mini doctor's kits were available, so I got one for him. It had gloves, Band-Aids, tongue depressors, etc. He was looking in my throat with the tongue depressor, and I kept saying "Ahhh." I guess he's never seen people do that. Come to think of it, I don't think his pediatrician has ever asked him to say, "Ahh." Anyway, he got frustrated with me and finally said, "Stop singing! I looking at your froat!" He sure makes life fun. Even in situations that don't lend themselves to fun.

Today, Levi's OT let the boys color eggs with this neat little contraption. I love how our therapists include Adam in the activities and give him attention while they are here to work with little brother.

Thursday, April 7, 2011

The Hospital

It is hard to explain all the thoughts in my mind as I get ready to sleep in this hospital one more night. I have felt so many different emotions in this building.

I was here a few times during my first pregnancy, and spent a month here on bed rest. This is where my extremely complicated pregnancy with Adam ended in bliss. This is where my extremely easy pregnancy with Levi ended in agony. Less than a year later, here I am again with this sweet baby boy we have fallen madly in love with. I haven't been stressed out this week. I feel comfortable here and actually soaked up the down time. Our care here has been excellent, and I am thankful for all the personal growth that has taken place in this building over the past few years.

Good News!

We finally got to see our regular pediatrician tonight. He said that the oxygen saturation levels are not getting low enough to be worried about, even when the alarm goes off and that Levi looks great. We still need to see the ENT & have his adenoids looked at, but we will probably be able to go home tomorrow.

Thursday Afternoon

His white blood cell count is in normal range now. They took him off the oxygen while suctioning his nose and left it off since they were going to use new tubing. He was doing well enough that they didn't put him back on oxygen. The problem is that when he fell asleep his oxygen level got too low again & the alarm on his monitor went off. Changing his positioning helped, but he can't go home until that stops happening.

We just made an appt. with an ENT who is nationally recognized for her work with children who have Down syndrome (and just happens to have an office less than 2 hours from our house, and is covered by our insurance!!). I am so thankful!!

We Had A Good Night

This child has the nursing staff here wrapped around his finger. He had a good night & is in a good mood this morning. Waiting to see the doctor now.

Wednesday, April 6, 2011

10 pm Wed. night

I don't have any news to report. Levi is asleep. I am going to try to rest, too. The pulse oxygen alarm went off once since he fell asleep, but I think he is in a good position now. I am glad to be here rather than worrying myself sick over him at home. Praying for a good night with no monitors alarming.

His white blood cell count was down to 22,000 this afternoon.

Tuesday, April 5, 2011

Pneumonia, Sleep Apnea, and Extremely High White Blood Cell Count

I'll spare you the details. Mostly b/c I'm too tired :)

We were admitted yesterday afternoon after 2 trips to the doctor. His skin was sinking in between his ribs with each breath and his nostrils were flaring as he struggled to breathe at one point. When he'd fall asleep, his pulse oxygen (which should be above 95) would fall into the 70s. Alarms would go off & nurses would run into the room. He is now on oxygen, and we are expected to be here a couple more days. They think he has sleep apnea & that his wide tongue is blocking his airway. The pneumonia, of course, is making things much worse. His white blood cell count (which should be between 12,000-15,000) was 36,000 yesterday evening. We are going to have his blood drawn again today.

The plan is to get him over the pneumonia then in to and ENT to see what to do from there.

I am thankful to have Adam well cared for by his grandparents. I am thankful for my hubby being so thoughtful while packing for me. He made sure I'd be comfortable while we are here. I am thankful I am not out of town and thankful for the excellent care we are receiving.