1p36 trip to Wisconsin

Miss O's chromosome abnormality is called 1p36 deletion. 1p36 deletion support & awareness hosts a conference every year for families, and we move it around the country so that everyone has the chance to attend. Two years ago it was in Boston, and we were able to go. Mike travels to Boston to work fairly often, so he scheduled one of his work trips around the conference weekend, and the girls and I flew there on Angel Flights. It was a great time, and really wonderful to learn more about 1p36 deletion, and meet other families. This year the conference is in Salt Lake City, and we just cannot make it. So one of our Wisconsin friends scheduled "1p36 Fun Days" in Madison for those of us in the Midwest who can't make it out to Salt Lake City. The kids really did very well on the ride there and on the ride home. Ato T was really stressed out being away from home for that long, but did quite well considering the circumstances.

The girls and daddy watching TV in the hotel room.

Ato T napping while the girls and daddy watch TV.

Picnic fun by the lake!

Miss O and her friend Jordy.

Jordy is the other child with 1p36 deletion that lives in the cities, and they were able to come as well. What's amusing about the weekend is that we ended up being the only 2 1p36 families to come with our kids. The 2 families that live in Wisconsin both ended up with very sick kids on the day we got together. We're hoping to try again here in the cities sometime in August. For those of us who were there, it was a lot of fun!

Independence Day

We had a nice, relaxing July 4th! Grandma Lynn and Grandpa Bob came over for lunch and the afternoon. We grilled hot dogs and had baked beans, fresh picked strawberries, lettuce salad and chips. It was nice to have a meal that didn't take too much effort to make, and didn't have way too much food. After the kids had quiet time we headed outside to play in the pool and have a lemonade stand. Mommy provided quarters for all the grown-ups to buy lemonade from the kids. It was nice to have our first lemonade stand in our own back yard. :)

Ato T helping daddy set up the lemonade stand.

Ready for business!

First customers.

Stand manager working hard. :)

"Napping" with daddy in his father's day gift. (I don't think daddy got much of a nap!)

Swing time with grandma comes with perks of singing fun songs!

I love that face!

The seizure saga continues

Well, it's official that Ato T is having Tonic seizures. He has between 3 and 15 a day now, but they are thankfully short and not violent. They do however, make him tired. So he has been sleeping more than usual lately. We met with his Neurologist on Friday, and will be starting him on Keppra this week. From what we understand, there seems to be no exact science to figuring out what medication and how much will help him with his seizures. So, we're praying the first one takes and works well without side effects. We're blessed with a Neurologist who also believes that if a medication is causing side effects that interfere with daily living. Even though this is stressful for us, we are so thankful, because it could be so much worse. Thanks for all of your prayers!

Like father, Like son

Grandma and Grandpa come over for a visit one afternoon, and it didn't take long to notice the similarities Mike and his father share. :) It took some convincing, but I felt like I just had to take a picture.

Crappy day - literally

The morning started off quite well. Miss O went to her handwriting class with her PCA, Ato T hung out doing his therapies at our house, and Miss I and I went to the park and for a bike ride. What a fantastic morning!

The afternoon started off well, too. Took all 3 kids to therapy and the first hour went off without a hitch. Miss I and myself even had time during that hour to get to Menard's and buy the hose that was on sale.

Approximately 15 minutes into the second hour is when the day fell apart. Ato T's speech therapist called me back because he was puking all over himself - literally. So, I packed up the kids and we went home. As we walk in the door, I wonder what the putrid smell is. Does the garbage need to be changed that badly? Am I really THAT bad of a housekeeper that my house smells like that? NOPE. It's diarrhea from the dog; all over the kennel, the floor, and the dog. Yum! I quickly send the girls to watch some TV and put Ato T in his favorite rocking chair, so no children are walking or crawling through the goo. I take the dog outside, then the kennel, and finally clean up all the poo on the floor, open up all the windows, and spray and endless amount of room freshener around the house.

By now the TV show is done, so we all head outside to bathe the dog. I gave her a really good dousing before I was willing to touch her with shampoo. Finally got her bathed and rinsed, and to to clean the kennel - fun!

Whew! It's all over! Right? Wrong!

The rest of the evening was spent changing 2 poopy panties of Miss O's (we're potty training). They were pretty soft, and definitely gross! (You're welcome for the description.)

During the girls' bath, I decided to try and vacuum. When I finished I came back into the bathroom to find that they had doused my newly cleaned bathroom with soapy water! Out of the tub they came, into the arms of a cranky mama trying to keep her cool.

As they are shivering and "drying themselves off" with their towels, I proceed to change Ato T's diaper and get him into his jammies. As I'm changing his diaper, Miss I distracts me by picking on her sister, and as I turn my head to intervene, the boy pees ALL OVER me! It of course startled me, and I instinctively yelled his name. (Bad parenting, I know.)

I clean him and the couch up, get his jammies on, get the girls' jammies on, change my shorts and wash myself off, and put Ato T to bed. (Who happens to be screaming the entire time because mommy yelled at him.)

I go to put the girls to bed and tell them mommy is tired, and we're doing prayers together tonight, instead of separately. That does NOT go over well with Miss O, who proceeds to scream through all of Miss I saying prayers, and is then sent to her room.

I finally got them all calm and in bed. Did I mention Mike was at a Twins game tonight? I got a movie to watch earlier in the day, so I went to relax and watch it. It was quite probably the worst movie in the history of movies.

I'm going to bed. I thank God that He gives us a new day every 24 hours. Here's to a better tomorrow!

Memorial Day weekend part 2

It's always a treat to see cousins!

Hangin' with dad.

Blowing bubbles with Grandma.

Memorial Day weekend part 1

For Memorial Day weekend, we had the chance to go down and visit Grandma and Grandpa Bogie. The kids always love going to the farm and playing! Here are some highlights:

Helping dad put training wheels on the bike.

Falling asleep on Grandma.

Playing with Grandma.

All the animals are always so much fun!

The Yard part 1

Here is the big project that has been keeping us very busy this summer. When we moved in to our home, this huge rock bed was already here, along with an old rotting shed. Mike tore the shed down this year, and we had planned to dig the rock out by hand. Last year we dug out enough for a small garden. This year we decided to hire someone to come in and dig it our for us. That was a good decision! It took a professional 10 1/2 hours with a dingo to get rid of the rock! Here is what it looked like before...

... and after! What a huge difference it's made in our yard!

After all the rock was dug out, it was time to bring in dirt to fill the space in. After all, the rocks went 4 inches deep. So here is 17 yards of dirt that was dumped onto our driveway. Now all that was left was to shovel in all and haul it to the back yard. :)

It took a week, but we got it done! The neighbors across the street (7 kids) came over with buckets and snow shovels one night and helped out! The girls had a blast helping out. We did 1-3 hours of work on it every day. Did I mention that this was a lot of dirt?!

The area we filled in will be turned into a garden next year. For this year, we are keeping the garden small, since it's getting late to plant. We did get a few things planted, though. 18 tomato plants, a watermelon, a pumpkin, cucumbers, broccoli, cauliflower, carrots, green beans, green peppers, jalapeno peppers, and lettuce. Later in the summer we'll plant peas, too. Here's hoping for a good crop!

Toad

Apparently this has been the spring for catching critters in our yard and playing with them. The girls caught a toad in early June and kept him for a couple of days. They even killed a couple bugs to feed it. Miss O was definitely the one who enjoyed holding the toad the most. Miss I held it just this one time, and she was incredibly proud of herself! But that was enough for her. I love watching my kids' love for the natural world God has given us grow!

Sprinkler Fun

We had a few extremely warm days in May. We didn't have the pool set up yet, so we took the opportunity to have some fun in the sprinkler. Miss I's birthmom gave her the fun caterpillar sprinkler to play with. Miss I is definitely the biggest fan of sprinkler running, followed by Miss O, and Ato T is the least fan out of the three. (Mommy runs him through it, so I can't get a picture.) It was a great way to cool off on hot spring days.

The Seizure Saga

Sorry I've been slack on the posting. I thought I should let you know why, lest you think I'm just being lazy. The next couple of posts will be an update on our spring busyness.

Our dear Ato T has been having something that his neurologist is pretty sure are seizures. This takes a while to figure out. Whenever you get a new specialist, you have to start at your primary care doctor, who then refers you to a specialist, who then has to schedule you for your initial appointment. All of that was done, and we were scheduled for and EEG that week, and then met with the neurologist a few days later. After all of that, he told us what we already knew, "Maybe it's seizures, maybe not. Try to get it on video." So, off we went, and that week I got a good long (16 minutes) episode on video.

I sent it in via email Monday. (This was not as easy at it sounds. We have an old VHS video camera, so we had to find writable DVDs that would work with our player, and then figure out how to copy the VHS to the DVD.)

By the next Monday I had not heard anything back, so I called to check on it. The secretary I talked with told me that because of confidentially practices, she needed to send me a secure email and I needed to reply to that email with the attachment, because they couldn't legally look at the video I already emailed her. (Even though it had been a week, and in order to email it to her, I called her and told her what I was sending, and she said NOTHING about it!) I asked her why she didn't tell me this sooner, and she told me it was because she was busy! Seriously?! This is my baby! He's having BRAIN PROBLEMS! Get it together lady!

I was thankful that she clearly knew she should have gotten back to me sooner, and she sent me the email within 10 minutes. I promptly replied, and she called me 10 minutes later to tell me that her computer not read the file. So I piled all the kids in the car on a rainy day to drive the DVD to them. (Did I mention that this summer we have 3 PCAs for the kids, but there have already been numerous days that NONE of them show up?!)

The Neurologist was out of the office that Monday, but we received a call bright and early Tuesday morning (8:30, which is very early for a Dr.'s office). Our neurologist believes that they definitely look like seizures. So now we have an overnight video EEG scheduled for this coming Wednesday. This is strange to say, but we're just praying he has one while we're there so that we can get some answers.

So that's the story of one of the things that have been keeping us busy this spring. I pray you're all having a fabulous spring! More updates to come!

The MN Zoo

Friday night we went to the MN Zoo for Dream Night! What a wonderful service to the community done by the zoo! We registered with our hospital in advance. Everything was free for kids with special needs and their families! Free parking, admission, stroller rental, monorail rides, a dinner and a toy monkey for each of the kids to bring home. The staff and volunteers were uber helpful all night long, and extremely considerate, making sure everyone had what they needed. We are so grateful for this wonderful opportunity. Thank you MN Zoo! You gave us an amazing start to our summer!

Cousin

Ray came over to spend the day with us a few weeks ago. It's been way too long since he's spent a day with us! We all had so much fun! Of course, the rock pile was played with a lot!

This was adorable! Ray told me he was fixing the tree, because it was broken.

The actual day

I neglected to mention in the last post that we celebrated Ato T's birthday on Saturday, and the actual day wasn't until Monday. That's because on his actual birthday, he was circumcised, had botox and phenol injections, and had his legs casted. He was not happy about it, but he did really well. Here's our trooper that afternoon.

Ato T's birthday

It was our "baby's" third birthday earlier this month! It feels like a significant birthday. He's now had more birthdays here in the US than he had in Ethiopa. We are thankful every minute of every day that the Lord has made him part of our family forever. Happy birthday baby boy! We love you!

Seeds

We are growing tomato plants and hot peppers from seed in our front window ledge. The kids all helped me plant them, and I've actually been doing a good job keeping them watered. When we planted them, we all prayed for them together. The majority of them have come up and are healthy, but there are a few that have not sprouted, and it's been 3 weeks. As I water these plants, I pray for them. I pray that the Lord would help them grow into strong plants that will produce good food to nourish our family. I was watering them today, and skipped over 2 that had not sprouted, figuring I would give up on them. And then, it seemed that the Lord spoke to me. He told me that my job is only to put the seeds in the soil and give them the food and water they need. That's all I can do. It's God's job to cause them to sprout and grow into plants that bear fruit, when He knows the time is right for them. All I do is tend the garden. When they are put into the ground, I will continue to water them when they need it, I will shelter them if a storm or frost threatens their survival, I will pray for them, I will do my best to protect them from creatures that want to devour them, and I will pull weeds to keep the plants from being choked out of the garden.

Then the Lord reminded me, this is exactly what our job is with our children. What a wonderful message that was to me today! It's a message we can carry to all the parts of our lives. I can teach my children about God, model Christian living for them, help them memorize scripture, etc. But all I'm doing is tending the garden. God will take care of these little seeds, and allow them to sprout when He knows it's the best time for them.

Thank you, Lord, for growing my garden. Help me to tend it with patience and care. Keep it safe under your protective care.
Amen.

Madeline

The girls found a bunny today. Apparently, the mamma made a nest in a pile of leaves we had. Mike was cleaning up the pile today, and this sweet little bunny hopped out. The girls had fun playing with it, naming it and petting it today. We even tried to feed it. However, after some research, we decided that raising a bunny right now is not really something we can do. We talked to a rabbit rescue, and they said the mamma will still feed it if we bring it safely back to the nest, so we did. There were two VERY sad little girls in our house tonight.

(Especially Miss I)