Things have seemed a little more smooth around the house lately, which is a nice change. [I wrote that sentence a few days ago. if you asked me today, I would say that I'm tired and crabby] Lily is sitting up now. She is still pretty wobbly, but she can do it for a few minutes as long as something out of reach isn’t holding her attention. My phone is a new obsession for her and usually causes her to try to dive out of my arms to get it. We’ve learned that baby slobber equals a phone’s early demise the hard way, so we have some non functioning phones for her to chew on. But how does she know so early that they aren’t nearly amazing as my phone? I know she would love to be mobile since she loves to stand and bounces when she is on her belly and frustrated that she can’t reach something. These are all really great things to see. She is not very interested in eating baby food or sleeping through the night. I think she just loves me too much that she couldn’t bare going that long without seeing me. We had it pretty easy with Lincoln that when we needed him to drop the night feeding and sleep through the night he only cried for about 10 minutes before falling back asleep. This is not saying he was a great sleeper (or is a great sleeper), but it will be even harder to let Lily cry even though we all need some more consecutive hours of sleep.
We got some great news at Lily’s appointment on Friday for her blood clot. She is clear to get off her blood thinners! Hallelujah! I probably haven’t realized how much time and concern has gone into making sure her patch that we use to give her the shots is working properly. The patch in all of its annoyances has been great because it meant that Lily only got one needle stick every 4-6 days instead of twice a day. It saved her from a lot of pain. I’m looking forward for all her bruises and hard bumps to heal on her belly and thighs. Since we are going back to Virginia Beach LT this summer, we had a lot of questions about being away for so long. One of them being…how can we keep the patch dry in the pool? But now we don’t have to worry about that! The appointment itself was pretty long and tiring with difficult blood draws and a long ultrasound. When there is good news at the end of the tests and struggles, though, it made those things seem less traumatic.
After the marathon appointment we went to the super bowl village. It was kind of lame. There were herds of people going no where and not a ton to do. Our beast of a double stroller battle rammed its way through the traffic. Lincoln was so pumped about the trip. He has a lot of fond memories of Riley hospital, riding the elevators and eating McDonalds. When we explained that we were going to the super bowl village he jumped around screaming. His energy was heightened by his lack of sleep. There was one thing he enjoyed at in the super bowl village, a little mini football field. As soon as he got on the mini field he took off running crazy and screaming. We were glad we went to see what was there especially since we were already downtown.
A few weeks ago we met with the vision specialist who we saw back in October. She has been the most encouraging sweet person we’ve met through all of this stuff with Lily. She is very knowledgeable and super helpful. As soon as she walked in the door she was gushing over how much better Lily looked from the last time she visited us. Although she said Lily still has some delays in tracking objects and responding to things visually, she said she is the most improved child she has ever seen. This of course brought tears to our eyes. At our first visit she said that Lily is in the best possible place to improve because of how young she is and the fact that her brain started healthy. During our second visit she said she improved even more than she was expecting. We still have some work to do, but I don’t think we’ll need to meet with her the next time she is in town. Maybe I should just hang out with her by myself because she is so encouraging.
We moved Lincoln into a big boy bed in the fall because he was climbing out. He got demoted back to the crib with a crib tent to help him get some more sleep for a few months. But last week, we transferred him to his big boy bed for good and Lily is finally in a real crib and out of the pack ‘n play. It’s nice to have her in the crib and her room finally settled. I’ll have to post some pictures soon. Lincoln is back to not sleeping well…it’s kind of hard to sleep when you get up and turn the light on and start playing at 5:30am. I’m sure he’ll crash eventually.
Lily loves watching Lincoln…but even more so, she loves grabbing his hair, ears, sleeves, hands.
Lily is 5 1/2 months old and continuing to do well. We haven’t had any recent doctors appointments, so I don’t have any new news there. Lily’s first steps therapist is still very encouraged by her progress. According to her developmental list of milestones, Lily is on track…or very close to it. She is grabbing at objects more and being more interested in “playing”. Her sweet smiles are such a nice reassurance.
We still very appreciative of everyone’s prayers. Most days I don’t find myself dwelling in the unknowns of the future. However, often when I see other children with development issues, I’m reminded that we may still have a long road. When we were in Bloomington, IL visiting Carl’s family for Christmas, we ran into a guy that has been following Lily’s story and praying with his daughters every night. His daughters were excited to meet Lily in person and were so sweet. I think we all had tears in our eyes. I love seeing God’s heart in a child’s faith and honest words. It was humbling to meet them and we are forever grateful.
Lily survived her first Christmas with both our families. Lincoln was very excited about all the presents he got to open…his, Lily’s, and pretty much everyone else’s as well. We had a really nice time visiting and being with family, now we are recovering!
Here are some pictures…
{Christmas at home a few days early}
{Christmas at the Frosts}
{Christmas at the Kuchars}
{Just Lily}
{Lincoln at the Lincoln Park Zoo}
{My cuties}
{What happens after many joyous Christmas celebrations…}
Days are feeling more manageable around here. I’m not having to hold Lily quite as much during the day which allows me to spend more quality time with Lincoln. This all helps how many breakdowns Lincoln has during the day. Lily is also sleeping better at night which really has given me hope that there is light at the end of the tunnel. I don’t like that my mood and sanity is determined mostly by sleep schedules, but I guess that’s where I’m at right now.
We had a neurologist appointment a few weeks ago and another EEG (she had two when we were in the hospital). We were kind of disappointed with the results. She still has potential for seizures on the right side of her brain, however the slowness is gone. We are in the process of switching her anti-seizure medicine for one that is better for long-term. Although I thought I would be okay if the test came back not completely clear, I was still pretty bummed. She is really doing well with developmental things, so I was hoping the test would show that improvement as well. The neurologist also said that with the amount of damage they saw in Lily’s MRI, if she comes out of this with no effects from the meningitis, she would be very fortunate. That wasn’t pleasant to hear either. It’s always a reality check with the neurologist. For a day or two, I was pretty down. But, I know she is doing so well. I can see her catching up to where she should be every day. We’ve been very encouraged with the first steps therapy. We had to get a new therapist because our old one had some family issues to tend to. The new therapist hasn’t seen Lily as much, but she is very pleased with where she is at right now.
I love to see her smile. I think the fact that Lincoln was such a stone-faced baby makes every smile that Lily gives me a true miracle. I see Lily everyday (and feels like every minute of everyday), but when the nurses at our doctor’s office see her and say they think about her all the time and know she’s a miracle makes me remember how far she’s come.
We traveled for Thanksgiving to see both families. Lily rolled over some more on Thanksgiving and started babbling. Now it feels like she is “talking” all the time. Lincoln found some real gems from my youth…
…my HOTT pink glasses from when I was 10 years old. I found my old blanket from when I was little. Oddly enough, we left Lincoln’s blanket at my parents’ house. Yikes. I didn’t realize how attached he is to little Lambie. He was so shocked and devastated when we told him what happened. It was like we had forgotten Lily. The pictures my parents sent of Lambie playing with toys at their house helped. And when we got the package in the mail, he didn’t put it down the rest of the day. I’m glad we don’t need to wake up to crying in the middle of the night because he misses Lambie. Looks like I might be ordering a back-up.
Lincoln is taking a picture of her with his Buzz Lightyear phone.
It looks like he’s trying to help her…but I think he is saying that she needs to get off his toy.
Everyone loves the new iPad. The “no touch” policy didn’t last long.
Last week we visited the neurologist for a check-up for the first time since the hospital. We had an appointment with a nurse practitioner because the doctor we were supposed to see was sick. The doctor we were supposed see turned out to be the same one that we had seen in the hospital and of which we were not a fan. So we told the nurse practitioner that we would like to switch to a different doctor for our next appointment. This other doctor was in the office that day and dropped by to meet us and take a quick look at Lily herself. Win Win!
Overall, it was a really encouraging appointment. The nurse practitioner was really impressed with how Lily looked. She said after looking at her chart with all that Lily has been through she was expecting a totally different baby. Lily was tracking well with her eyes at the appointment. They really didn’t see many areas of concern at this point. She wasn’t able to get a reflex in one of her legs, but she wasn’t concerned since it can be hard to check that on a little one.
We are going back in the middle of November to have another EEG done which will determine when she can come off her anti-seizure medicine. They said the last EEG didn’t look pretty. So even though we aren’t sure if she had a seizure, it is still a good reason for her to be on the medicine. If the next EEG looks good, then we will probably start taking her off the medicine. And if there are still spikes and areas of concern, then we’ll probably move to a different medicine that will be better for long term…potentially years.
Lily took her first trip this past weekend to a retreat for our church. Lincoln went with my parents to the cottage in Michigan and had a blast riding a pony, feeding cows on the farm, and walking on the beach. Lily did great and did what she does best…sleeping in my arms. This worked out well at the retreat because I could go where I wanted and didn’t need to worry about nap time, but it’s starting to pose a problem at home. We should probably work on that.
Lily is smiling more, not all the time, but slowly more and more. She thought the bunk bed where we slept this weekend was particularly funny and smiled long enough for me to take a picture. Her first one!
This is a demanding stage of life. And with her challenges it adds even more stress and anxiety. We pray for sanity most days and are thankful for the evening breaks. Over the last couple weeks Lincoln started climbing out of his crib and has transitioned into a big bed. The main change is that he is no longer napping. Ugh! Lily has been sleeping well at night…but needless to say, we all need a little more sleep.
Thank you Jesus for the miraculous healing in our sweet baby. We pray that you continue to work in her little body and that there are no traces of this illness other than the trust and faith in you that has been strengthened in us and so many others.
Here is a video of Lincoln’s new toy, an interactive map of the world. It has been awesome because he LOVES playing with it and it can keep his attention for a long time (or at least a long time for Lincoln). It is also a practical outlet for his crazy memory…better than memorizing all of our friend Sarahs’ keys and what they go to. I fear the day that Lincoln knows more than me is coming soon.
The second part of the video is of Lincoln singing some songs from story time at the library. Carl got the privilage of seeing Lincoln in his element at story time this past week. He is hilarious and always in the center of the circle. His little buddies (or homies) are usually there too which is fun to see how they all interact and how different they are. Lincoln normally has a problem sitting down when he’s supposed to sit because he is so excited about dancing, jumping, and talking with Miss Beth the story time lady. He likes to tell her what is coming next or what he would like to do next.
We made our first trip back to Riley after almost two weeks. Lily had an ultrasound of her leg that has the clot and then we saw the hematologist. Her leg is still a little swollen and has some slower blood flow, so they think the clot is still there. This isn’t really shocking to anyone, but means she’ll be on blood thinners for a while longer. The real bummer is that they mentioned Lily potentially having to stay on the blood thinners for even a year! Sometimes if babies are taken off the blood thinners too early they have the risk of their leg always being slightly bigger than the other. We don’t want an angry teenager with one leg bigger than the other. I am still convinced that my clot leg is still a little bigger…so I understand.
We are adjusting back to “normal” life. Carl goes back to work in a week which will be another adjustment. But we’ve enjoyed easing back into things slowly. Lily is doing really well. She is back to being a pretty good baby with little crying. We think she is starting to track us with her eyes. This is a little slower than normal babies since she was doing it before she got sick, but it is big progress for her now.
Lincoln likes having us all back together. When we are all in the same room he’ll say, “the whole family is together.” And when Lily is crying he says, “sometimes babies cry, mom.” He has always been very sensitive to when babies or kids cry or get hurt, so it’s good that he’s learning to react more calmly. Although occasionally he does still fall to the ground saying, “pick her up mom, pick her up” with his hands over his ears when she cries.
Here are some pictures from the last two weeks…
{lincoln really loves daddy. they get a lot more hang out time these days. most of time it’s great…but not when he yells at me before bed “i want daddy”}
[I just found this post in my drafts. It's about Lincoln's trip to the hospital. At the time it was very scary and a really challenging experience. Ha! It seems almost comical with all that happened with Lily. But I thought I would post it anyway since it's already written. Now I can remember what I was thinking at the time.]
We’ve had a busy couple of weeks. We had a baby, had visits from both sets of grandparents, found out Lincoln’s long standing battle with a cough was really a pretty bad case of pneumonia, had to take Lincoln to the hospital, had another visit from my parents to help out with the hospital stuff, and are now dealing with me being sick. I was just about to post about Lincoln having pneumonia Thursday night when after we put him to bed he couldn’t stop coughing. I called our doctor and knew from what she was saying we would end up having to take him to the ER. However having an awesome doctor, she called the pediatric floor (the same floor I ended up on after having Lily so we could have a private room) to see how many beds they had left. She got the last one and told us to make our way to the hospital so they could start him on a more powerful antibiotic. Of course I couldn’t go with Carl and Lincoln to the hospital since it would not be a great place to have a newborn. I am pretty emotional due to my pregnancy hormones and was bawling as they left the house to drive to the hospital and cried pretty much the whole next day. Lincoln was really excited to go back to the hospital to go on the elevators and that he would finally get to see the moon and stars. When they stepped outside at 12:30am to get in the car, he started singing twinkle twinkle little star with hand movements and all.
Even though I really wanted to be there, Carl is pretty sure I would have had a major breakdown witnessing the 45 minutes it took the nurses to get an IV hooked up. They finally got one started in his foot after trying both arms and the other foot. Lincoln is now officially freaked out of all nurses. He ended up being in the hospital for two nights with Carl by his side the whole time. They have turned into quite the pair. I was able to go visit a couple times leaving Lily to cuddle and sleep with some friends. Every time I talked to Carl the nurse was bringing Lincoln something new to play with or a new DVD to watch (all Dora of course). He ate a lot of ice cream and popsicles and probably ate more at the hospital than he has in the last 2 weeks combined. Since he’s been home, his appetite has grown tremendously. According to Carl, Lincoln is pretty funny in the middle of the night saying random things that made them both laugh. After the nurse came in to check his vitals he said, “Daddy? Pleeeease play Ghost Go!” The back story on this is that back in May we were at a support meeting with a family that had 3 boys. The boys were a little done entertaining Lincoln and wanted to play the game Ghost Go on the Wii. So they kept telling Lincoln to ask us if he could play it. Now it’s a running joke that he is wants to play it. It’s even more funny at 3 in the morning.
My parents came to help out and got here Friday night. On Saturday, the same day Lincoln came home, I started not feeling well. So, it ended up being even more helpful to have my parents here to help out since I was pretty out of commission most of Saturday night and some of Sunday. It’s been a long couple of weeks, but we’ve had a surprisingly good attitude most of the time. Thankfully, Lily is doing awesome. Although I’m completely freaked out she is going to catch something, she has been a huge blessing in how laid back she is and low fuss. It’s funny to think about how she has no idea the chaos that surrounds her.
Since Lincoln has been home, he is much more back to normal. He didn’t really act sick all the time before which I think threw the doctors off at diagnosing him. But now I see him getting back to what he was before and it’s very nice!
When we were at the hospital, Carl’s dad weeded and planted some flowers in our yard. Later we’ll put more permanent things in. Then Carl and my dad edged the front. It looks so much better. Now I can actually visualize actually putting bushes or something in there.
BEFORE:
AFTER:
The flowers Carl’s dad planted spelled out “It’s a girl”
