Today we went to the annual SB Walk-Run-Roll. It was at a really nice park and the weather turned out to be ok. There was a good chance of rain this morning but it held off and we were able to be outside to enjoy the walk. It was also nice to see some of our SB friends that we hadn't seen in a while and to meet some new people. We were especially excited to meet a family whose 2-year old was rolling around in a home-made wheelchair fashioned out of the bumbo seat. It was sitting on a big cutting board and had wheels, and they told us they made it to model the Zip-Zac wheelchair.
It got us talking about making or getting something like this for Leah. Just in the last week or so, she's been showing signs of wanting to be more mobile. We know that a normal 9-month old would likely be crawling right now. We were having dinner with neighbors who have an 11-month old and he was standing and taking a few steps on his own. It makes us want to start pushing her a little more to give her some independence. It's a fine balance between getting her to be mobile in a chair and getting her motivated to stand and walk on her own. I'm hopeful she'll get into a stander and braces and walk; but I also don't want to hold her back from being mobile.
It was a really fun morning being with the SB community. I loved watching how spunky these kids are and also looking at all their gear. Ty especially likes seeing what kind of gadgets they have. But it also makes me realize how fortunate we are with Leah's condition. There were a few kids who were on oxygen or had tracheal tubes. Others have had several shunt revisions, surgeries to correct club feet, to loosen leg joints, or more serious surgeries. We are so blessed!
Saturday, August 25, 2012
Sunday, August 19, 2012
Growing Up
Leah had 2 big milestones this week that shows me she's growing up. First, this morning she finally got her first tooth!!! There was just a little bit of white poking through her gums and I think the 2nd one is not far behind. That explains why she was chewing on her tongue yesterday. What an odd feeling of having soft gums one day and a tooth the next!
She also is done with her swaddle blanket. Yes, my 9-month old was still being swaddled to bed each night. Typically a baby weans off the swaddle around 3 months, certainly when they can start rolling. Since Leah doesn't roll from back to tummy, it was ok to keep her swaddled and she really needed it to fall asleep. Last week she woke up a few hours after going to bed and got some spit-up on her swaddle. It was too late to wash it, so I put her back to bed on her tummy and she slept all night. Since then I've been putting her down on her tummy. It's taking a little longer for her to fall asleep but she is able to sleep without the swaddle... something I thought would NEVER happen! It's fun watching her grow up but makes me kind of sad that she won't be a little baby much longer.
She also is done with her swaddle blanket. Yes, my 9-month old was still being swaddled to bed each night. Typically a baby weans off the swaddle around 3 months, certainly when they can start rolling. Since Leah doesn't roll from back to tummy, it was ok to keep her swaddled and she really needed it to fall asleep. Last week she woke up a few hours after going to bed and got some spit-up on her swaddle. It was too late to wash it, so I put her back to bed on her tummy and she slept all night. Since then I've been putting her down on her tummy. It's taking a little longer for her to fall asleep but she is able to sleep without the swaddle... something I thought would NEVER happen! It's fun watching her grow up but makes me kind of sad that she won't be a little baby much longer.
Wednesday, August 15, 2012
9 Month Baby
Last Friday Leah turned 9 months old. I just cannot believe how quickly the time has gone by and what an amazing little baby she is. Here are some of the things she’s doing these days:
We had her 9-month check-up and she weighs in at 17 lbs and 26". That puts her in the 30th percentile for weight and 20th for height.
She can roll very easily from tummy to back. With a little help, she can go from back to tummy, but she doesn’t like being on her tummy for long. She can sit up on her own if she has her hands on her knees, but can’t quite sit unassisted if she has something in her hands. She is doing great with a little bit of support, either in the bumbo chair or propped against the couch with a little table in front. She can pivot on her tummy about 45-degrees.
She has a pretty good variety of sounds, like da-da, ma-ma, ni-ni (like night-night), and starting to put in some gaa and vaa sounds. She doesn’t associate dada or mama to either of us yet, but she knows Jack! If we ask her “where’s Jack?” she looks at the floor for the cat. It makes us realize how often we talk about him.
Her fine motor skills are very good. She can pick up small pieces of food (although it’s harder for her to put those small bites in her mouth). When she’s holding rings or small toys, she can turn them around and grabs onto them really well. We’re starting to work on putting a toy into a bowl and figuring out how to find toys when they disappear under a blanket. The other night I had her up on the kitchen counter playing while I was cleaning up, and I put a little water in her bowl. It was so funny to watch her face when she put her hand it in. She looked up at me like, DO YOU KNOW WHAT’S IN HERE??!!!!! She also loves clapping and now she’s banging rings or toys together and against a hard surface. I think she likes making noise.
She is still toothless. I thought for sure there’d be at least the bottoms in by now, but we’re still waiting. I’ve been a little slower than I probably should on feeding her solids. She’s only getting solids at dinnertime and it’s only 2-3 times a week that we’re giving her anything. She doesn’t wake up in time to have breakfast and we don’t sit down for a family dinner regularly, so we haven’t been in much of a routine there. It is fun to watch her try new things and she will pretty much eat anything we give her, including asparagus! Actually she loves asparagus and other vegetables, including a bite of my spinach lasagna. Her sleeping habits are pretty good. She goes down for the night between 6:30-7 and wakes once to eat. I thought she’d outgrow this by now, and I’m getting tired. There’s really no routine, she’ll wake anytime between 1am and 6am. During the week I have to get her up by 7 to get to work on time, but on the weekends I let her sleep until 8:30… and I sleep until then too!
Everything is moving along right on track. Her pediatrician was really happy with how she's developing and growing, and we are also very thankful to have such a happy and healthy baby. And as promised, here are some recent photos of the babe...
Monday, August 13, 2012
Celebrations
We have been keeping very busy the last 2 weeks, but with lots of fun events and celebrations. 2 weeks ago, our college friends came to town for the Twins-White Sox baseball game (they live in Chicago), so it was fun to have a night out away from the baby. Then 2 weekends ago Leah and I made another trip down to Illinois to reunite with the Cunningham clan. The main reason for the trip was to celebrate baby Colin's baptism. But we had some extra celebrating to do because my brother Matt got engaged to his girlfriend, Katie! We are sooooooo excited to welcome her (officially) into the family. And more good news, my other brother Dan officially made the Peoria Fire Department. After 2 years of interviewing and testing and waiting and waiting, he finally got THE call that he's been waiting 29 years for. He's expecting to be in the Academy this fall. Congratulations to all 3 of my brothers who had big exciting events happening!!!
While we were in Peoria, Leah got her first real haircut at the salon. My sister-in-law is a hairdresser, so she cut Leah's bangs and trimmed up the back. Now she looks so grown up. She even got a lollipop treat for being such a good girl. She sat on my lap and went along with it, and thankfully was very patient and let Jamie cut it. Unlike her mommy, she sat very still and was a good sport. I think she liked all the attention and being in the salon with all the girls.
Last Sunday my mom and sister came back to Minneapolis with us, and this was Leah's first long car ride. The longest she'd ever been in the car was about 2 hours, and this trip ended up being 9 1/2. Yikes! Usually the trip is about 7 hours, but I figured it would take a little longer with stops to feed her. We didn't plan on almost an hour of road construction just south of the Cities. But we all survived and I'm thankful I didn't have to do that drive by myself. We're planning on returning for the holidays this winter, and I'm thinking maybe flying is the way to go.
Last week was a busy week for me at work. My department had our annual meeting with 3 days of all-day meetings and evening activities. I had a great time but it was tough missing bedtime for Leah and I didn't get much time with her. She and I had some good snuggle time on Saturday morning, though, which was good for both of us.
Leah seems to be back to normal after her ear infection/ upset tummy/ gagging episodes of a couple weeks ago. Thank goodness because she had me pretty worried. We are now thinking that maybe we don't need to do the sleep study that Dr. Marker had recommended since she hasn't had any issues. We did have to call him on Saturday because she broke out into a pretty bad rash. I was playing with her on the floor of our living room and she was rolling around on the carpet. We had been warned that carpet backing contains latex, but we had never seen a reaction from her before. Many kids with SB have a latex allergy because of the exposure early in their life to it. Leah hasn't shown any signs of allergy yet, but we have a precaution for her. We watched her closely throughout the day, and thankfully it didn't move past a rash. However, we will need to keep an eye on anything that has latex because the reaction will get worse and worse each time she's exposed. The good news is that a lot of hospitals and schools are moving to latex-free because of the allergy, and it's good to know about it now so we can keep her away from it.
I have lots of pictures on my camera that I need to download and add some recent ones of her. Check back soon!
While we were in Peoria, Leah got her first real haircut at the salon. My sister-in-law is a hairdresser, so she cut Leah's bangs and trimmed up the back. Now she looks so grown up. She even got a lollipop treat for being such a good girl. She sat on my lap and went along with it, and thankfully was very patient and let Jamie cut it. Unlike her mommy, she sat very still and was a good sport. I think she liked all the attention and being in the salon with all the girls.
Last Sunday my mom and sister came back to Minneapolis with us, and this was Leah's first long car ride. The longest she'd ever been in the car was about 2 hours, and this trip ended up being 9 1/2. Yikes! Usually the trip is about 7 hours, but I figured it would take a little longer with stops to feed her. We didn't plan on almost an hour of road construction just south of the Cities. But we all survived and I'm thankful I didn't have to do that drive by myself. We're planning on returning for the holidays this winter, and I'm thinking maybe flying is the way to go.
Last week was a busy week for me at work. My department had our annual meeting with 3 days of all-day meetings and evening activities. I had a great time but it was tough missing bedtime for Leah and I didn't get much time with her. She and I had some good snuggle time on Saturday morning, though, which was good for both of us.
Leah seems to be back to normal after her ear infection/ upset tummy/ gagging episodes of a couple weeks ago. Thank goodness because she had me pretty worried. We are now thinking that maybe we don't need to do the sleep study that Dr. Marker had recommended since she hasn't had any issues. We did have to call him on Saturday because she broke out into a pretty bad rash. I was playing with her on the floor of our living room and she was rolling around on the carpet. We had been warned that carpet backing contains latex, but we had never seen a reaction from her before. Many kids with SB have a latex allergy because of the exposure early in their life to it. Leah hasn't shown any signs of allergy yet, but we have a precaution for her. We watched her closely throughout the day, and thankfully it didn't move past a rash. However, we will need to keep an eye on anything that has latex because the reaction will get worse and worse each time she's exposed. The good news is that a lot of hospitals and schools are moving to latex-free because of the allergy, and it's good to know about it now so we can keep her away from it.
I have lots of pictures on my camera that I need to download and add some recent ones of her. Check back soon!
Monday, July 30, 2012
Plugging Away
We've just been plugging away lately. Leah had been not feeling the greatest for about 2 weeks, and last Monday night we took her to the pediatrician where she was diagnosed with an ear infection. So that's why she was soooo cranky and fussy last weekend. She also had been having some teeth pain, so we had been giving her motrin and teething gel as well. All the while we were both getting nervous that she was having shunt failure, but she seems to be on the mend now. Just last night I was tickling her and getting the best belly laughs from her, so I know she's in better spirits.
Last Thursday I did take her to see Dr. Marker, her SB doctor. He wanted to see her for himself. He looked at her ears and saw that they are getting better, so that was good news. But he spent a lot of time reviewing her last couple head ultrasounds and was a little concerned. Since April we had been seeing her brain ventricles grow a little bit, but was managed with shunt adjustments. Now that he looked over all of her ultrasounds, he was more concerned that he had been. He wants to do another sleep study to see if her breathing has changed since the last one we did back in December. She had been gagging more than normal and more spitting up, which can be a side effect from her Chiari, and ultimately a reason to do a shunt revision. I'm hoping that it's unrelated and just due to feeling a little under the weather, but I also think we're heading closer and closer to a shunt replacement. *insert sad face*
It just really reminds me that no 2 Spina Bifida kids are alike and it's almost as if we're dealing with a condition no one has seen before. It's so unique to Leah and what works for 1 kid doesn't work for another. It's also not a cut-and-dry condition. For now her head is still really soft and can accomodate a little excess fluid if her shunt is not working as well as it should. So its appropriate to wait and see right now. How often have I said "wait and see"??? Le sigh. That's ok, I just keep reminding myself that it's better than the alternative and everday we can keep this current shunt is a good day.
Last Thursday I did take her to see Dr. Marker, her SB doctor. He wanted to see her for himself. He looked at her ears and saw that they are getting better, so that was good news. But he spent a lot of time reviewing her last couple head ultrasounds and was a little concerned. Since April we had been seeing her brain ventricles grow a little bit, but was managed with shunt adjustments. Now that he looked over all of her ultrasounds, he was more concerned that he had been. He wants to do another sleep study to see if her breathing has changed since the last one we did back in December. She had been gagging more than normal and more spitting up, which can be a side effect from her Chiari, and ultimately a reason to do a shunt revision. I'm hoping that it's unrelated and just due to feeling a little under the weather, but I also think we're heading closer and closer to a shunt replacement. *insert sad face*
It just really reminds me that no 2 Spina Bifida kids are alike and it's almost as if we're dealing with a condition no one has seen before. It's so unique to Leah and what works for 1 kid doesn't work for another. It's also not a cut-and-dry condition. For now her head is still really soft and can accomodate a little excess fluid if her shunt is not working as well as it should. So its appropriate to wait and see right now. How often have I said "wait and see"??? Le sigh. That's ok, I just keep reminding myself that it's better than the alternative and everday we can keep this current shunt is a good day.
Wednesday, July 4, 2012
It's Summertime!
On Monday we had our usual check-up with the neurosurgeon and our Spina Bifida doctor. Back in April we got some disappointing news that her shunt wasn't working very well, so we had been coming back every 4 weeks to see how things were going. I am delighted to say that we had a great appointment this week, and her ventricles were slightly smaller than they were last money. WOO HOO!! Our neuro was a pretty surprised by that. We had adjusted her shunt again down to 50, which must have done the trick. It makes me thankful that we didn't go in and replace it back in April, and why our team wanted to be conservative. We would have done surgery when we probably didn't need to. Things are looking good with her, so we don't need to come back until September. Thanks for all your prayers and support... I think it's working!
We've been having a great summer so far! It's great being a 10-minute walk to the beach, so we've taken Leah to the lake a few times. She loves it :) We're also feeding her more foods, and she's eating everything we give her, though sometimes I can tell she doesn't like it. So far, her favorite is a plain piece of toast. She also liked peaches once but didn't the other night, same with the pear/applesauce I made.
This morning our little community had a Kiddie 4th of July parade. It was sooooo hot! But we went and saw lots of kids on their bikes, in wagons, strollers, walking down the street. It makes me love our little town even more. It's too bad it was too hot to do anything else outside today.
Enjoy some pictures of our summer fun.
Swimming in the lake with Daddy
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On the fire truck at the 4th of July Parade
Fun at dinnertime
We've been having a great summer so far! It's great being a 10-minute walk to the beach, so we've taken Leah to the lake a few times. She loves it :) We're also feeding her more foods, and she's eating everything we give her, though sometimes I can tell she doesn't like it. So far, her favorite is a plain piece of toast. She also liked peaches once but didn't the other night, same with the pear/applesauce I made.
This morning our little community had a Kiddie 4th of July parade. It was sooooo hot! But we went and saw lots of kids on their bikes, in wagons, strollers, walking down the street. It makes me love our little town even more. It's too bad it was too hot to do anything else outside today.
Enjoy some pictures of our summer fun.
Swimming in the lake with Daddy
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On the fire truck at the 4th of July Parade
Fun at dinnertime
Thursday, June 28, 2012
Reflections
Have you ever wondered what it feels like to run into a glass door? We've all seen those clips on America's Funniest Home Videos, kids running into a screen door; people not realizing their door was shut, or that there was a door at all. One minute you're strolling along, minding your own business, thinking about the weather and what's for dinner when ... BAM!!! ... next thing you know you're on the floor. The contents of your bag go flying, your coffee spills everwhere, and you lay on ground thinking, WTF just happened?! How did I miss that? Your first thought is, am I hurt? Then, how will I ever get back up again? But you do. You can't just lay there forever, so you pick yourself up, collect your crap, and get your bearings. It may take a few minutes for the sting to wear off and your first couple steps have a hesitation to them, but eventually you're able to move on.
Sometimes you literally do run into something you didn't see. I am notorious for running into stuff, and I am embarrassed to admit that I actually did run into a glass door. Ty and I were leaving a movie theater and I ran right into it. Oops! But there have also been times when I've been totally blindsided by something in my life. And that's exactly what happened to us 1 year ago today. I was 19 weeks pregnant, we went in for our big ultrasound and got the news that the our baby would be born with "many anomolies." It was truly one of those moments in life when we were totally knocked on our butts. I was very scared that we were going to lose the baby because initially they didn't give us a diagnosis. They saw something on the baby's neck and spine that didn't look right. We went back the next day for a level 2 ultrasound to see the baby in greater detail, and it was then that we got the diagnosis of Spina Bifida.
We were completely caught off guard, knocked on our butts, the wind taken out of us. It took us a few days to get our bearings, but we were able to accept what had been handed to us. It didn't take long for us to look at our life and be so thankful at what we do have. That's what gets me through, by being grateful and seeing all the positives, focusing on what we can control and some of the things that are just serendipity.
3 years ago we bought a 1-level house that has a flat driveway to the street. We live in one of the best school districts in the state, one that offers Early Intervention for families, like ours, who have children with special needs. Our neurosurgeon is one of the best... anywhere... period and he is a pediatric neurosurgeon. Our Spina Bifida doctor has been seeing SB kids for most of his career. He took our call when he was on vacation in the Cayman Islands. It takes us 20 minutes to get to Children's Hospital, the best hospital within 500 miles. Not long after we found out about our diagnosis, I was having lunch with a work friend and I happened to mention that Leah had Spina Bifida. She actually knew someone whose daughter also had SB and introduced us, which I how we met our friend, 5-year old Addie. Missy then brought me into the mom's group and got me connected with other SB families. I also met another SB mom through my perinatologist, and she had just delivered her daughter a few months earlier. The list goes on and on......
This was kind of an emotional day for me. It marks the beginning of the scariest and darkest days of my life. It's also the beginning of an amazing journey of getting to know people we would have otherwise never met, seeing incredible love and generosity and compassion from family, friends, co-workers and even strangers. And it's also the first time I actually felt like a mom.... just the feeling of overwhelming love for this little baby, feeling like I would do whatever I could to protect her and make her better. It's when we found out we were having a girl and named her Leah.... and it suddenly became very real.
I actually took the day off today from work. I had to go into the office on Tuesday, my normal day off, so I was off today instead. I took Leah to the Minnesota Arboretum. We had a beautiful day, and it was great strolling around, looking at flowers and waterfalls. She's such an easy-going and happy baby, I could have taken her anywhere and she would have had fun! She's an amazing little person. Spina Bifida is part of who she is and I wouldn't trade her for the world. We still have a very long journey ahead. I think every year on this day I'll celebrate Leah Day, the day when my life changed... for the better. Sometimes we get knocked down but it's how we pick ourselves up that is the true test in life.
Sometimes you literally do run into something you didn't see. I am notorious for running into stuff, and I am embarrassed to admit that I actually did run into a glass door. Ty and I were leaving a movie theater and I ran right into it. Oops! But there have also been times when I've been totally blindsided by something in my life. And that's exactly what happened to us 1 year ago today. I was 19 weeks pregnant, we went in for our big ultrasound and got the news that the our baby would be born with "many anomolies." It was truly one of those moments in life when we were totally knocked on our butts. I was very scared that we were going to lose the baby because initially they didn't give us a diagnosis. They saw something on the baby's neck and spine that didn't look right. We went back the next day for a level 2 ultrasound to see the baby in greater detail, and it was then that we got the diagnosis of Spina Bifida.
We were completely caught off guard, knocked on our butts, the wind taken out of us. It took us a few days to get our bearings, but we were able to accept what had been handed to us. It didn't take long for us to look at our life and be so thankful at what we do have. That's what gets me through, by being grateful and seeing all the positives, focusing on what we can control and some of the things that are just serendipity.
3 years ago we bought a 1-level house that has a flat driveway to the street. We live in one of the best school districts in the state, one that offers Early Intervention for families, like ours, who have children with special needs. Our neurosurgeon is one of the best... anywhere... period and he is a pediatric neurosurgeon. Our Spina Bifida doctor has been seeing SB kids for most of his career. He took our call when he was on vacation in the Cayman Islands. It takes us 20 minutes to get to Children's Hospital, the best hospital within 500 miles. Not long after we found out about our diagnosis, I was having lunch with a work friend and I happened to mention that Leah had Spina Bifida. She actually knew someone whose daughter also had SB and introduced us, which I how we met our friend, 5-year old Addie. Missy then brought me into the mom's group and got me connected with other SB families. I also met another SB mom through my perinatologist, and she had just delivered her daughter a few months earlier. The list goes on and on......
This was kind of an emotional day for me. It marks the beginning of the scariest and darkest days of my life. It's also the beginning of an amazing journey of getting to know people we would have otherwise never met, seeing incredible love and generosity and compassion from family, friends, co-workers and even strangers. And it's also the first time I actually felt like a mom.... just the feeling of overwhelming love for this little baby, feeling like I would do whatever I could to protect her and make her better. It's when we found out we were having a girl and named her Leah.... and it suddenly became very real.
I actually took the day off today from work. I had to go into the office on Tuesday, my normal day off, so I was off today instead. I took Leah to the Minnesota Arboretum. We had a beautiful day, and it was great strolling around, looking at flowers and waterfalls. She's such an easy-going and happy baby, I could have taken her anywhere and she would have had fun! She's an amazing little person. Spina Bifida is part of who she is and I wouldn't trade her for the world. We still have a very long journey ahead. I think every year on this day I'll celebrate Leah Day, the day when my life changed... for the better. Sometimes we get knocked down but it's how we pick ourselves up that is the true test in life.
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