another virginia beach summer

We have come and gone from Virginia Beach for the summer. It was another great time at the beach. The LT program ran pretty smoothly. Although I don’t get to see the student as much as I’d like, it was great to see so many grow spiritually in many different areas. There were a ton of little kids running around between all the staff. Of course that many kids being together all summer and gaining new found independence can pose it’s challenges. But overall, it was a blast to see them all interacting together and nice to always have someone to play with / get in trouble with.

We celebrated a lot of birthday between all the staff and our family. For Carl’s birthday, we started with a long, hot bike ride to go out for breakfast (it had the potential to ruin the day, but thankfully ended up fun), he got to go golfing, we went out for a dinner date, and ended the day with the staff and some caramel bread pudding.

Lily’s birthday was next. She turned two this summer. She has been saying she was two for the past few months, so it’s good to finally be official. We gave her a tent and tunnel which she loves and folds up nice and small. I didn’t want to add a bunch of big stuff for our already packed trip home. She had a party with a Dora cake and a bunch of little friends where we, of course, watched Dora. Lily’s vocab exploded this summer and she came back talking so much more. Before we left, she had a lot to say but you needed an interpreter (me). Now she can communicate even more and even more loudly! Lily’s big loves this summer…the pool, walking fearlessly into the waves, giving everyone a running commentary on what all the kids are doing, and snacks. In the pool, she took quite a few accidental dips under the water, either out of a floaty or with me standing right by her. Toward the end of the summer, she learned not to jump in when I wasn’t ready. But she still scared me every time she came up to the edge to throw our stuff in the pool.

Then my birthday! It was a very relaxing day that included a bike ride to starbucks with the family, painting outside, out to dinner with all the staff, and a delicious peanut butter and chocolate cake and games in the evening. I also got some new running shoes that are bright pink. I’m not sure I can pull off the shoe color, we’ll see…and you’ll see me from miles away.

Lincoln had a good summer…especially compared to last summer when we learned about all his allergies that made him CRAZY. He has gotten crazy good at iPad games. Better than me, for sure. He learned the art of antagonizing girls and how cool older friends can be with his new idol, 8 year-old Ethan. His swimming really took off in the pool as well. He can swim some without his arm floaties and would probably like to do it way more than I feel comfortable. And he got to see his first movie in the theaters, Dispicable Me 2.

My college roommate and maid of honor in my wedding came to visit with her family (two kids the same ages as ours) for 2 1/2 weeks. We normally see each other a couple times a year, maybe. It was so wonderful to spend a lot of time together and get to know her lovely family better. She is so encouraging and good for my life! We also had a lot of other visitors in the beginning to middle of our stay. It was fun to wake them up in the morning with a Lily in their bed (pull-out couch).

Now we are back in Muncie and ready to start the crazy fall season. Ball State classes start on Monday and students are moved in. But we are so thankful for another opportunity to spend in Virginia Beach. There are so many good memories out there!

lily’s broken leg

A lot of people have already heard about Lily’s leg that she fractured two weeks ago. It’s still so shocking how simple the fall was that caused it. Just a little twirl in the middle of the floor and an awkward fall. The next day we got x-rays which confirmed the fracture. The following day we got in to see Dr. Hunt! It was nice to see a friend who we all love. Lily did awesome for all the x-rays and when they put on the cast. When we were leaving the first x-ray place the techs were talking about how this was the best kid/baby x-ray they’ve had in a long time. I think she was still pumped that Daddy brought her a special cake pop from Starbucks.

The first couple days she was sweet and cuddly. She watched a lot of Dora and ate bowls and bowls full of pretzels, goldfish, and ice. But then the next couple days she wasn’t sleeping well and very frustrated that she couldn’t walk. She could crawl around but would much prefer me to carry her everywhere. And I can definitely tell a difference in how much she weighs with the cast. I didn’t realize how much I enjoyed coming in the door and just putting her down and having her walk away.

I’m glad to say that she is walking like crazy now and seems back to normal. Other than taking a bath, it hardly feels any different. She is so much happier and pleasant now that she can walk again and has her freedoms. She can deliver notes to Carl and Lincoln that usually say “dinner is ready.” She can once again get up into a chair in our family room to look at books. And although it scares me, she can now spin and twirl again.

I hope when she gets the cast off there won’t be too much uncertainty or fear. I’m sure it will take a little getting used to having her leg back again. But she has proven so far to be a fighter and very adaptable. We love her and her little peg leg.

The depressed face, the surprised face, and trying to whistle.

Back to climbing. I had to make her a special slipper/sock to keep her from sliding all over the floor.

She can at least swing outside.

sassy little walker

We haven’t updated in a while. When I was working on Lily’s baby book I realized that all the details from her life come from updates that I post. So if I want to remember what has happened in Lincoln and Lily’s life, I guess I better post more often.

Lily continues to gain more and more personality everyday. She started walking almost two months ago, at 16 1/2 months, which is so exciting. We graduated from First Steps once she started walking. First Steps was so helpful. We noticed a difference in her ability and confidence within the first week of doing therapy. Right now she loves to play Just Dance on the Wii, play with Play-Doh, read books, rock her baby, take her baby or anything she can put in her stroller on a walk, and play with anything Lincoln plays with. She is getting better with waiting for her turn after she emphatically points at herself to let everyone know that she is next. When people come over to visit, Lily goes into performing mode. She’ll play the piano, scribble on the chalk board, walk on her tippy toes, spin around, and do all her animal noises. She likes people…and attention. I’m thankful so say that she is growing out of her separation anxiety. Starting last fall, anytime I would drop her off somewhere or leave her with a babysitter she would cry most of the time I was gone. I felt guilty for leaving her and a lot of anxiety. It’s been really nice lately to be pleasantly surprised by a happy girl when I pick her up. Now I can start re-entering life as me!

Last month we went to the neurologist. The doctor was very excited with where Lily is at and said we don’t need to schedule another appointment! YAY! Hopefully we won’t ever be back! Carl wasn’t there to ask all the questions like, “she’s a miracle right?” But I think it was implied.

We also had a regular check-up with our family doctor recently. Our doctor continues to be impressed by how smart she is and how aware Lily is of her surroundings. We notice all the time that Lily is listening and understanding a large amount of what we say. I can just briefly mention that we are going to take a trip somewhere, and Lily will go off to find her shoes to bring to me.

She continues to be a very sweet girl. Recently Lincoln was sick. He was laying on the floor watching a TV and Lily kept walking up to him and rubbing his back. We just love her kisses and squishy hugs!

Lincoln had surgery on New Year’s Eve to put a tube in one ear, patch a hole in his ear drum in the other ear, and to take his adenoids out. He recovered from that pretty quickly. Hopefully the patch will help the hole close so we don’t have to do a more extensive surgery. Lincoln and I both had the flu a couple weeks ago which took us out for almost a week. It was awful. Thankfully and miraculously, Carl and Lily didn’t get it. Lincoln was also sick this past weekend. Other than a bunch of sicknesses and still having to use his nebulizer everyday, he is doing well. He loves preschool and is working on his humor. Because most of his jokes revolve around poop, he has quickly learned the word “inappropriate.” Lately, he has been doing puzzles like crazy. He probably does two different states puzzles 2–3 times a day.

Carl has taken Lincoln sledding a couple times this winter. They have so much fun and Lincoln has gotten more and more daring. Lincoln told me that he went farther than all the girls and that he hit his head on some rocks really hard. Sounds like a blast.

That’s all for now. Thanks so much for caring and loving our family!

A Lily Update

First…here is a video I put together for Lily’s first birthday of pictures from the last year. We’ve been so encouraged by the Josh Garrels’ song used in this video.

Second…we’ve had a lot of appointments since we’ve been back in town and I wanted to update people on what is going on with Lily.

Lily is doing great. She is a very sweet, happy, smiley, and squishy baby. Medically, she is still impressing the doctors and making exciting progress. When we got back from Virginia we met with the evaluators from First Steps. They re-evaluate every year, and I was really expecting to not qualify again for their services since Lily is doing so well. Since she isn’t walking yet and at the time was only army crawling, they recommended physical therapy to help her strengthen and develop more quickly. Although, given Lincoln’s slow development as a baby, they said it is probably more due to genetics than Lily’s meningitis. I was kind of down when they recommended that, but I know she will walk and get there. Any added help for her will only benefit her. Although we haven’t actually started any physical therapy yet. By the time we do, maybe she’ll be walking!

The appointments for Lily’s blood clot down at Riley continue to be the longest! Our appointment was at 12:30 and we didn’t see the doctor until after 3pm. The leg that had the clot was still slightly more swollen than the other leg. Hopefully it will go down when she is walking around and using the leg more. During these appointments, it’s been really awful taking blood from Lily. Thankfully, this time, they were able to get blood right away with only one stick. After a marathon appointment, I bought myself a creamy shake from the McDonalds in the hospital since I hadn’t eaten all day…and I deserved it. I was at my car in the parking garage ready to drive home. Lily was exhausted and about to fall asleep when I put the shake in the car. I must have grabbed it by the lid because it dumped all over Lily’s stroller, landing all over the back of the stroller and in the tray and all over the ground. I looked at it in complete shock. It was a miracle it wasn’t all over Lily since it was surrounding her. When I looked back she was eating it out of the tray on the stroller and kind of annoyed when I took her out to put her in the car. What an end to a long exhausting day.

We met with a specialist from VIPS…vision therapy for kids. This is the third time we’ve seen her. I just love meeting with her because she is so encouraging and thoughtful. When she first came to see us, Lily was about 3 months or so. She would have rated her vision at a 3 or 4 out of 10. At this past visit, she put her at a 9 or 10 out of 10. I’ve known for a while that she is able to see well when she is picking up the tiniest bit of lint off the floor. But it’s always nice to get reaffirmed by someone with so much experience. Lily’s left eye still has a little trouble tracking when looking down. It’s subtle, but it could be a problem if it’s not corrected. We have an ophthalmologist appointment in Indy at the end of the month. The vision specialist wasn’t sure if the ophthalmologist would recommend glasses or not since it’s not too extreme. It will be very interesting keeping glasses on a one-year-old. But we’ll cross that bridge if we come to it.

This past week, we had an appointment with the neurologist. The quote of the day from that visit was, “Lily is doing as well as we could hope for…actually better than we could hope for.” Yay! The doctor said that if she came in not knowing her history, she would just think Lily was a little slow to walk.

We continue to feel so blessed by our little miracle baby. And it’s amazing to see God’s hand in her life and ours when we continue to meet new people that have been impacted by her life and story. I love how she loves to give kisses and affectionate head bonks. I love how much she loves people and interacting with everyone she meets. I love how she crys when Lincoln gets hurt or leaves for preschool. I love her dancing. I love her addiction to goldfish. I love how she can hear a dog bark from a mile away and has overcome her fear of dogs and other babies that get in her face. I love her so much…and if you’ve read all the way to the end of this post…you probably love her a lot too!

siblings

I really like how much Lincoln loves Lily. Here are some random pictures and a video of them together.

This was on Lily’s birthday. She was really into getting sand all over her face. Hello, Attitude!

At the aquarium.

4th of July…shorts twins.

no internet = no posts

We haven’t had consistent internet in our house since we’ve been back from Virginia. We got back about a month ago and we are still waiting for our internet to get hooked up! Needless to say this is cramping my style! I’ve been meaning to post about Lily’s first birthday, her medical updates, and the rest of our summer in Virginia. Instead, here are a few pictures from the last couple months. I’ll catch up another time.

Carl thought it would be fun to take Lincoln down a huge slide on the beach. Lincoln thought it was no big deal going up the steps to the top and even went down it with little hesitation. But as you can see from his face, he was freaking out on the way down. Once he got to me, he wanted to go again.

 

It’s just hard for me to resist cute swing pictures.

 

 

Lincoln got so much more confident in the water this summer. It was fun to see his transformation from being scared to sit on the steps of the pool to dunking his face underwater…and from not wanting his feet to get wet on the beach to getting mauled over by waves and wanting more. This all happened right before we found out that he has a hole in his ear drum. Back to ear plugs and the ear doctor for us. This picture if obviously a random sprinkler day and not the pool or beach…again, another day.

 

 

Thanks neighbors for sharing your internet with us!

virginia beach!

We made it to Virginia Beach a few weeks ago for our 3rd summer here. It was a rough start. Carl got vertigo and was either dizzy or zoned out on medicine to stop the world from spinning. Lincoln was out of control for about a week when we first got here. We think he is allergic to cats and is now on allergy medicine. It’s helping him sleeping more soundly at night and from not throwing huge fits and tantrums over nothing all day long. He thew more tantrums in one day than he has in his entire life. Carl is allergic to cats and there was obviously one in our house recently, so it seems like the most likely option. Carl recently threw his back out, but other than that we are adjusting to life on the beach. Rough, huh?

Our friend Beth and 3 month old baby Evan surprised me and visited for a few days. It was so refreshing to see her. I was completely surprised when she knock on our door. I think it was really good for Lincoln’s heart as well to see a familiar and beloved friend. He will randomly bring up how he misses things from home…his big boy bed, our “real” Target, his closest full of toys, our garage, escapades (indoor play place), and friends.

Lily is doing well. She is going to be one next month! Super hard to believe. She is army crawling all over the place. She books it for the front door when it’s open and plays peek-a-boo with the outside. Sometimes she tries to escape. Officially, she is off all medication, and I haven’t noticed any real difference in her mood or behavior. She loves real food now which has been fun to see her covered in spaghetti sauce and peach juice. Her smile and sweetness has been capturing the hearts of many here in Virginia.

PEE PARTY! If you’ve been around Lincoln for long enough, you’ve probably realized that he has some issues pooping. We’ll leave it at that. We’ve been told to wait until his issues have subsided to start potty training. But we signed him up for pre-school, so the time has come. Friday we had a pee party. It consisted of a bunch of chips, as much juice as he wanted, candy for rewards, and movies all day. He knew diapers were a thing of the past and the pee party symbolized the future. Since Carl’s back was out, it was a good day for a lot of movies and peeing on the potty. Due to all the juice, Lincoln peed 18 times on the potty with a few accidents. He even pooped on the potty twice, which felt like a true miracle. He is still doing awesome peeing on the potty and has embraced the bigger boy status. Pooping is going ok, but I have more hope than I’ve had for a year.

 

lily is almost 10 months old!

Here is a quick update on Lily…

She is continuing to do awesome! We still meet with first steps once a week and our OT is still very encouraged by Lily’s progress in tracking and muscle tone. Lily is a clapping and waving expert now. She likes playing peek-a-boo with her blanket or dress or anything that can be lifted in front of her face. She is starting to give people things (or throw them at people) and play “so big.” My last report asked for prayers that she would start eating so we don’t have to go through any extra therapy for that as well…and she has. Since about 7 1/2 months she has been eating baby food and actually enjoying it. Although she puts most things in her mouth, she spits out all solid forms of food. Our OT gave me some suggestions to try. Now that she finally has two teeth popping up, maybe she give it a try. She really wants to be able to move, but no crawling yet. Lincoln was a pretty late bloomer, so I’m not too worried. I’m just enjoying the time where she sits still and plays without getting into a bunch of stuff she’s not supposed to.

I can’t count the times I think or say…she is just the sweetest thing in the world. Her little smiles, waves, interactions, and snuggles are so wonderful.

Lincoln loves her a lot which always makes my heart happy. The other day I heard him asking her if she would talk to him. He is constantly trying to get her to say different words and gets really excited when she plays with him.

Tomorrow we go to the neurologist and have another EEG done. We are hoping and praying that this time the test looks clear and free from any potential seizure spots. Although Lily does really well now with taking her medicine, it would be great to be off all types of meds at this point. The test itself will be interesting now that she is older and more aware of what’s happening around her. The last EEG was done six months ago. You can also pray that she corporates and sleeps when they want her to sleep and doesn’t pull all the probes/wires off her head so we can get an accurate reading.

One of the residents, who was there when I first brought Lily in to see our doctor, gave a presentation about her case on Monday. I provided them with some photos and videos of her to help show her development and progress. It will presented at the state level and hopefully Lily’s story will bring out awareness for group b strep to help babies in the future. Apparently, it was a pretty moving presentation especially with the medical audience knowing the statistics and understanding the true miracle she is.

{Carl ran the Cincinnati marathon last weekend. Lily was a big inspiration for this marathon}

I got some videos together for the presentation that I haven’t posted on the blog yet…here they are.