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.
Thursday, June 28, 2012
Thursday, June 14, 2012
Getting So Big!
Look who's growing up!
Yep, I'm 7 months old.
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I can sit up all by myself.
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I'm such a happy baby!
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Yep, I'm 7 months old.
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I can sit up all by myself.
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Avocado and sweet potato... mmmmm
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I'm such a happy baby!
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Thursday, June 7, 2012
7 Month Milestones
Life with Leah has kept us pretty busy lately. We officially have a sitter!! She sat for the first time on her own the other night. Ty kind of let go of her as she was sitting up on the kitchen counter. She put her hands down and supported herself. Then we put her on the floor with a pillow in front of her for a little support and she was very steady. Pretty soon she’ll be able to do it all by herself without any help. She’s also been practicing baby sit-ups with Daddy. She grabs onto his fingers and pulls herself up. We’re so, so, so, so proud!! I expected her to meet her cognitive milestones on time but had kind of prepared myself that she wouldn’t meet all of her physical milestones. She proved me wrong!!! At not quite 7 months old, she’s on her way to sitting up all by herself, which is beyond our expectations. I could tell she was pretty proud of herself too, it was so cute. I hope she continues to exceed our expectations!
We also have some fun news about our family. Leah is officially a big cousin! She was the baby on the Cunningham side for 6 months and now we have another nephew. Congratulations to my brother and sister-in-law on the birth of Colin Michael, who was born on Tuesday and joins big brother Shane. He is the 5th grandchild and the 4th in 18 months. Between my 2 sisters-in-law and I, we’ve had a baby every 6 months since November 2010. Family get-togethers are going to get louder and crazier but so much more fun. I can’t wait to get my hands on the little guy!
On Tuesday we had our usual day of appointments. We started out getting head and renal ultrasounds, and then we went to get results of the head u/s with our neuro team. The good news – her ventricles aren’t getting bigger and her head size is growing at a normal rate. The bad news – her ventricles are larger than our neuro team would like to see. That could just be that she has bigger ventricles, or it could mean that her shunt isn’t working as it should. I’ve said before that our neuro team is very conservative, and they have a hard time justifying putting her through shunt surgery if it’s still working. She is in good spirits, eating and acting normally, so it doesn’t appear to affect her. We’ve now had 3 appointments with little to no change in her ventricle size, so we come back in another 4 weeks. I think they are leaning more and more towards replacing the shunt. He did an adjustment to her shunt and moved the pressure down to 50, but he isn’t very confident that it will make much difference. We just have to wait and see.
Then we went to Spina Bifida clinic for the first time. Usually we just see our regular SB doctor after our neuro, but this time we went to clinic. At clinic there are 3 doctors – the SB doctor, the kidney/bladder doctor, and the physical therapist doctor. Clinic is a way for kids to see all of these doctors at the same time and for them to compare notes and discuss treatment plans together vs. having to see all of them individually. It’s great to have a team approach and see everyone at once, but it makes for a long afternoon and a lot of waiting. Leah’s renal u/s looked great again, which means she has very healthy kidneys. This is very important, as people with SB are prone to UTIs and can have a lot of trouble in this area. Our #1 goal right now is to keep her kidneys healthy, and it’s working. A lot of SB babies also need catheters to empty their bladders, and we are very fortunate that we don’t have to do that yet. As she gets older, we’ll need to potty train her differently, but we have a few years before we need to think about that. Overall she is in good health and is growing nicely. Dr. Marker, the SB doctor, told us we can feed her as much as we want until she turns 1, and then she’ll need to be on a skinny diet… LOL! But in all seriousness, this is an issue with children who aren’t mobile. We will need to make sure she eats healthy and manages her portions. Being thin will help her maintain her overall wellness but will also help her mobility. It will be much easier for her to walk when she’s not overweight. This is something that will be very important to her and us as a family.
Speaking of mobility, we also saw the rehabilitation doctor for the first time. There isn’t much for physical therapy to do today, but it will happen quicker than we think. Things are looking very good on the physical side. She does not have much movement below her hips, but she is very strong in her upper body. She has great head and neck control, and has strong arms. All of this is very important for her to start pulling herself up, rolling over, sitting, and then crawling. She gave us some suggestions of things to use with her as she starts to crawl that will help with her movement. Leah’s legs are very good, nice and loose. Her left foot is a little tighter than she’d like to see, but stretching that out will make it looser. We need her feet to make a 90-degree angle so she can fit into the orthotics that will help her stand and eventually walk. We’re very thankful she doesn’t have club feet or tightness in her legs and feet, as that could require surgery. All in all, we had a very positive day, still some concerns with the shunt, but she’s doing great otherwise.
Last weekend we participated in a charity 3K walk for the Children’s Hospital Neonatal Intensive Care Unit (NICU). We were among over 100 other families who have spent time in the NICU. We saw lots of multiples (twins, triplets), preemies, and other kids who needed surgery like Leah did. We also saw a family who has a daughter with SB that we had met at the picnic last September. It was nice catching up with them. Their daughter is 3 and her lesion is L2-3, just like Leah’s, and this little girl can walk. I love seeing other kids who have the same lesion that Leah has because it gives me so much hope that she’ll be running around, too. We walked around and saw an incubator bed and a rocking chair, just like they have at the hospital and it brought back lots of memories and emotions for us. It’s really weird to think back at that time that we spent at Children’s, both when she was first born and when we went back for her shunt surgery. It almost feels like it didn’t happen and I wonder how I got through it. But then I look at Leah and realize it was all worth it.
Wow, another long update. I have had people request more pictures. Come back in a couple days and I’ll get some news ones up. Also, please consider helping with the Spina Bifida genetics project that I posted about last week.
We also have some fun news about our family. Leah is officially a big cousin! She was the baby on the Cunningham side for 6 months and now we have another nephew. Congratulations to my brother and sister-in-law on the birth of Colin Michael, who was born on Tuesday and joins big brother Shane. He is the 5th grandchild and the 4th in 18 months. Between my 2 sisters-in-law and I, we’ve had a baby every 6 months since November 2010. Family get-togethers are going to get louder and crazier but so much more fun. I can’t wait to get my hands on the little guy!
On Tuesday we had our usual day of appointments. We started out getting head and renal ultrasounds, and then we went to get results of the head u/s with our neuro team. The good news – her ventricles aren’t getting bigger and her head size is growing at a normal rate. The bad news – her ventricles are larger than our neuro team would like to see. That could just be that she has bigger ventricles, or it could mean that her shunt isn’t working as it should. I’ve said before that our neuro team is very conservative, and they have a hard time justifying putting her through shunt surgery if it’s still working. She is in good spirits, eating and acting normally, so it doesn’t appear to affect her. We’ve now had 3 appointments with little to no change in her ventricle size, so we come back in another 4 weeks. I think they are leaning more and more towards replacing the shunt. He did an adjustment to her shunt and moved the pressure down to 50, but he isn’t very confident that it will make much difference. We just have to wait and see.
Then we went to Spina Bifida clinic for the first time. Usually we just see our regular SB doctor after our neuro, but this time we went to clinic. At clinic there are 3 doctors – the SB doctor, the kidney/bladder doctor, and the physical therapist doctor. Clinic is a way for kids to see all of these doctors at the same time and for them to compare notes and discuss treatment plans together vs. having to see all of them individually. It’s great to have a team approach and see everyone at once, but it makes for a long afternoon and a lot of waiting. Leah’s renal u/s looked great again, which means she has very healthy kidneys. This is very important, as people with SB are prone to UTIs and can have a lot of trouble in this area. Our #1 goal right now is to keep her kidneys healthy, and it’s working. A lot of SB babies also need catheters to empty their bladders, and we are very fortunate that we don’t have to do that yet. As she gets older, we’ll need to potty train her differently, but we have a few years before we need to think about that. Overall she is in good health and is growing nicely. Dr. Marker, the SB doctor, told us we can feed her as much as we want until she turns 1, and then she’ll need to be on a skinny diet… LOL! But in all seriousness, this is an issue with children who aren’t mobile. We will need to make sure she eats healthy and manages her portions. Being thin will help her maintain her overall wellness but will also help her mobility. It will be much easier for her to walk when she’s not overweight. This is something that will be very important to her and us as a family.
Speaking of mobility, we also saw the rehabilitation doctor for the first time. There isn’t much for physical therapy to do today, but it will happen quicker than we think. Things are looking very good on the physical side. She does not have much movement below her hips, but she is very strong in her upper body. She has great head and neck control, and has strong arms. All of this is very important for her to start pulling herself up, rolling over, sitting, and then crawling. She gave us some suggestions of things to use with her as she starts to crawl that will help with her movement. Leah’s legs are very good, nice and loose. Her left foot is a little tighter than she’d like to see, but stretching that out will make it looser. We need her feet to make a 90-degree angle so she can fit into the orthotics that will help her stand and eventually walk. We’re very thankful she doesn’t have club feet or tightness in her legs and feet, as that could require surgery. All in all, we had a very positive day, still some concerns with the shunt, but she’s doing great otherwise.
Last weekend we participated in a charity 3K walk for the Children’s Hospital Neonatal Intensive Care Unit (NICU). We were among over 100 other families who have spent time in the NICU. We saw lots of multiples (twins, triplets), preemies, and other kids who needed surgery like Leah did. We also saw a family who has a daughter with SB that we had met at the picnic last September. It was nice catching up with them. Their daughter is 3 and her lesion is L2-3, just like Leah’s, and this little girl can walk. I love seeing other kids who have the same lesion that Leah has because it gives me so much hope that she’ll be running around, too. We walked around and saw an incubator bed and a rocking chair, just like they have at the hospital and it brought back lots of memories and emotions for us. It’s really weird to think back at that time that we spent at Children’s, both when she was first born and when we went back for her shunt surgery. It almost feels like it didn’t happen and I wonder how I got through it. But then I look at Leah and realize it was all worth it.
Wow, another long update. I have had people request more pictures. Come back in a couple days and I’ll get some news ones up. Also, please consider helping with the Spina Bifida genetics project that I posted about last week.
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