Leah has been in the news a lot over the last couple months, and a couple organizations have used her and our story in different ways... galas, newsletters, local newspaper and other fund-raising activities. We have always been very open about sharing our story, but I'm a relatively private person and sometimes have heartburn with putting ourselves out there so much. Just recently, I heard a story that reminded me why I do this. In the end, it's to make connections and help other families like ours find the support they need.
One of the galas we were featured in this spring was for her daycare. As a side note, I'm very overly cautious not to mention the name of her daycare because this blog is public and I'm a little paranoid about having strangers know where she goes to school. It's why I haven't shared much about our work with them. They had us in a video talking about why we love it there and why it's been such a blessing to our family. We didn't know it at the time, but there was someone there who was introduced to this organization for the first time. Her fiancé's son is 4 and has spina bifida, too, and he splits his time between South Dakota and Minneapolis. In our story, we talked about Leah's spina bifida, and how she is accepted for who she is. This woman immediately contacted our daycare, and they've since accommodated her little boy's schedule for him to come just a few days a month when he's here in town. All because we were open to sharing about the road we traveled, we were able to help another family. Bennett and Leah now play together when he's at school, and she even wants to walk like he does, with walking sticks! It's also nice for Leah to see another boy at school who's just like she is. Sometimes things work out so well!
Wednesday, July 29, 2015
Sunday, July 19, 2015
Top Doctor is Our Doctor
Leah and I were in the grocery store the other day when we saw a familiar face in the check-out line. On the front page of the Minneapolis-St. Paul magazine was Dr. Nagib! Hurray!! I asked Leah if she knew who that was... she didn't, which is actually not a bad thing. Not seeing him is good. I told her that was Dr. Nagib, and she got really excited and said, "That's my doctor!" Of course, I had to buy the magazine. He was named one of the cities' top doctors, one of 6 who were featured in the article... and the only one on the cover. How fortunate that he's ours!
Here's a link to the full article: Minneapolis-St. Paul Top Doctors
He literally knows the inside of Leah's brain. He's done 3 surgeries on her - the first was to close her back, the next 2 were to place and replace her shunt, almost exactly a year apart.
It's yet another reminder that this is where we're supposed to be. As often as I pray for Leah, I also pray for her doctors. I feel so fortunate that the few times she's been in surgery, and any future surgeries she may have, the absolute best hands are working on her.
Here's a link to the full article: Minneapolis-St. Paul Top Doctors
He literally knows the inside of Leah's brain. He's done 3 surgeries on her - the first was to close her back, the next 2 were to place and replace her shunt, almost exactly a year apart.
It's yet another reminder that this is where we're supposed to be. As often as I pray for Leah, I also pray for her doctors. I feel so fortunate that the few times she's been in surgery, and any future surgeries she may have, the absolute best hands are working on her.
Wednesday, July 15, 2015
Health Update
We actually have been a bit quiet in all things health-related, thank goodness. Leah had her annual neurosurgical visit and twice-a-year Spina Bifida clinic appointment last month. As usual, we started out in Radiology at Minneapolis Children's Hospital. She had a rapid MRI scan, which takes a looks at her brain ventricles to ensure they're still within the range we'd like to see. It also shows her chiari malformation, that pesky little abnormality of her cerebellum. The good things about the rapid MRI is that it goes fast and she doesn't need to be sedated for it. The bad news is that she has to be totally straight-jacketed, in a loud machine where she can only see me through a little mirror, for 5 whole minutes. She's still talking about how she was very upset being put into the machine. The second test we did in Radiology was an X-ray of the shunt and tubing, which shows us where the shunt is so we make sure the tubing is still winding free down her neck and into her abdomen. The MRI is a magnet, which could possible reset her shunt, so they also take a picture of the shunt valve setting.
Following Radiology, we headed over to see Pete and take a look at the results. All good! The ventricles looked great, almost normal. And not just Leah-normal, but regular non-hydro normal. Her chiari is still there, and still big, but for the moment is not causing any issues. Leah was her typical charming self with Pete, and he thought that overall she's in really good shape! We'll see him again next year! We went directly to Dr. Marker's office, and he was similarly pleased with how she's doing.
We had made a change with the rest of her care and moved from Children's to Gillette. While we absolutely love Dr. Nagib and Pete for neuro and Dr. Marker for general SB, we had not been happy with the physical rehab specialist or urology doctor at Children's. After hearing a lot of great things from other families about Gillette, we decided to make the change this spring. Last year I moved her Physical Therapy to Gillette and was so much happier with the level of care that we received, so I was optimistic about the Spina Bifida clinic there.
Gillette's SB clinic is fairly new, only about a year old, but a lot of families had been migrating to them recently. They also got some of the "kinks" out and we had a great experience. Clinic at Children's and Gillette is basically the same process, and in both places they make it a one-stop shop for all the SB specialists. They work together to discuss the best plan for the patient, and also make us only come in once to see everyone. Right away, I liked Gillette, though they were running quite a bit behind. The first specialist was a rehab doctor, who wanted to know all about Leah's health history and checked out her legs and body. This doctor was a young-ish lady. Then about 5 young-ish (I'm talking 30's) female doctors came in to talk more thoroughly about her legs, walking, and everything physical. As a mom to a young daughter, I really liked seeing these girls, as I believe having strong female role models are great for Leah. I met the chief neurosurgeon, who's also the director of the SB program, and talked with him while Leah had some hip x-rays done. He was ok, but I definitely like Dr. Nagib better. This doctor didn't give me a vote of confidence when I asked him if he was as good as Dr. Nagib.
Her hip x-ray showed that both hips are still in their sockets. Hip dislocation is very common in SB, and the bones can eventually find a new socket farther up the pelvis. It's only a problem when the hips become uneven, which causes pain and scoliosis from the leaning. Doctors used to do surgery to replace the hips, but the recovery was long and painful, and the hips would often fall back out of joint quickly. Unless it's a problem, they'll leave them as they are. Luckily, that's not a problem for her now but we will keep watching them closely.
Finally, we met with the urology doctor. I really, really liked him! His approach, his philosophy and general demeanor. He told us his rules: he is in charge of her health; we are in charge of her social life. He will defer to social life until health is compromised, which I really appreciate. Right now, Leah is not cathed or on any kind of bathroom program. I asked about it because she's 3 1/2 and starting to notice that she's one of the only ones still in diapers. He asked me about UTI's, and whether she suffers constipation or other issues. Our answer is that diapers are working just fine for her, and his response was that he can't offer us any other options that will make our lives easier right now. She will need to be continent for kindergarten, which is 2 years away, so we'll wait another year before starting down that road. For now, we keep doing what we're doing, as her health is good.
Our first Gillette SB experience was a positive one. We will go back in 6 more months, where they will do some more tests on her kidneys and bladder as we move towards a bathroom program. They also recommended we start Physical Therapy back up. She's starting to slow down on the walking, preferring the wheelchair a little more often at school. Could that be a typical 3-year old thing, or is she done with it? She has a friend at school who uses walking sticks, and talks about wanting to walk like Bennett... maybe she needs more of a challenge. We also want her to start learning how to get in and out of her wheelchair and onto the couch.
Whew! That was a long update to say that she's doing great!
Following Radiology, we headed over to see Pete and take a look at the results. All good! The ventricles looked great, almost normal. And not just Leah-normal, but regular non-hydro normal. Her chiari is still there, and still big, but for the moment is not causing any issues. Leah was her typical charming self with Pete, and he thought that overall she's in really good shape! We'll see him again next year! We went directly to Dr. Marker's office, and he was similarly pleased with how she's doing.
We had made a change with the rest of her care and moved from Children's to Gillette. While we absolutely love Dr. Nagib and Pete for neuro and Dr. Marker for general SB, we had not been happy with the physical rehab specialist or urology doctor at Children's. After hearing a lot of great things from other families about Gillette, we decided to make the change this spring. Last year I moved her Physical Therapy to Gillette and was so much happier with the level of care that we received, so I was optimistic about the Spina Bifida clinic there.
Gillette's SB clinic is fairly new, only about a year old, but a lot of families had been migrating to them recently. They also got some of the "kinks" out and we had a great experience. Clinic at Children's and Gillette is basically the same process, and in both places they make it a one-stop shop for all the SB specialists. They work together to discuss the best plan for the patient, and also make us only come in once to see everyone. Right away, I liked Gillette, though they were running quite a bit behind. The first specialist was a rehab doctor, who wanted to know all about Leah's health history and checked out her legs and body. This doctor was a young-ish lady. Then about 5 young-ish (I'm talking 30's) female doctors came in to talk more thoroughly about her legs, walking, and everything physical. As a mom to a young daughter, I really liked seeing these girls, as I believe having strong female role models are great for Leah. I met the chief neurosurgeon, who's also the director of the SB program, and talked with him while Leah had some hip x-rays done. He was ok, but I definitely like Dr. Nagib better. This doctor didn't give me a vote of confidence when I asked him if he was as good as Dr. Nagib.
Her hip x-ray showed that both hips are still in their sockets. Hip dislocation is very common in SB, and the bones can eventually find a new socket farther up the pelvis. It's only a problem when the hips become uneven, which causes pain and scoliosis from the leaning. Doctors used to do surgery to replace the hips, but the recovery was long and painful, and the hips would often fall back out of joint quickly. Unless it's a problem, they'll leave them as they are. Luckily, that's not a problem for her now but we will keep watching them closely.
Finally, we met with the urology doctor. I really, really liked him! His approach, his philosophy and general demeanor. He told us his rules: he is in charge of her health; we are in charge of her social life. He will defer to social life until health is compromised, which I really appreciate. Right now, Leah is not cathed or on any kind of bathroom program. I asked about it because she's 3 1/2 and starting to notice that she's one of the only ones still in diapers. He asked me about UTI's, and whether she suffers constipation or other issues. Our answer is that diapers are working just fine for her, and his response was that he can't offer us any other options that will make our lives easier right now. She will need to be continent for kindergarten, which is 2 years away, so we'll wait another year before starting down that road. For now, we keep doing what we're doing, as her health is good.
Our first Gillette SB experience was a positive one. We will go back in 6 more months, where they will do some more tests on her kidneys and bladder as we move towards a bathroom program. They also recommended we start Physical Therapy back up. She's starting to slow down on the walking, preferring the wheelchair a little more often at school. Could that be a typical 3-year old thing, or is she done with it? She has a friend at school who uses walking sticks, and talks about wanting to walk like Bennett... maybe she needs more of a challenge. We also want her to start learning how to get in and out of her wheelchair and onto the couch.
Whew! That was a long update to say that she's doing great!
Sunday, July 12, 2015
The Anniversary
It's been 4 years now that we got Leah's diagnosis. That means that it's been 4 years since my life felt normal. I've been trying to think about what was going on during those last few days before our lives changed. I was starting to put thing on a baby registry, researching brands of car seats, and bookmarking some of my favorite bedding items. None of it had anything to do with Spina Bifida. The night before, I was excited to see her on the ultrasound in the morning. Since I was close to 20 weeks, it had been a while since I'd seen the baby. I think the last ultrasound was at 9 weeks so I was looking forward to seeing how much more baby had grown. Nothing, though, could have prepared us for what was to come.
Four years later, we are definitely in a better place that we were. I wish I could have had a peek into this 4 years ago to make me realize that we would be okay. I follow several blogs with other kids with a variety of special needs. One mom wrote this the other day, and I found it to be incredibly powerful and really resonated with me:
I know that she’s going to be fine. This is her life, it will always be her life and she won’t know any different. I am the one who has to come to terms with her life being different than how I imagined it. That being said, if Spina Bifida comes with her, then I’ll take it because I want all of her. It's taken me a long time to believe that. There are still days when I wish SB away, but I banish those thoughts quickly because it would change Leah. And I love her just the way she is.
It was a rough few days following the diagnosis, by far the hardest of our lives. For 5 days, we met with doctors, researched Spina Bifida, and figured out how our life would be different. The most overwhelming part of the whole process was finding out about everything that could possibly go wrong, be different, happen to her during her whole life. All worst case scenarios. It wasn't until we started talking to other families that we got a much clearer picture of what is more likely going to be our reality. I suppose doctors and specialists have to tell us every single thing that we could encounter, but they make it seem so bleak. In reality, our life is nothing but bleak. It's joyful, happy, satisfying, and enjoyable.
Four years later, we are definitely in a better place that we were. I wish I could have had a peek into this 4 years ago to make me realize that we would be okay. I follow several blogs with other kids with a variety of special needs. One mom wrote this the other day, and I found it to be incredibly powerful and really resonated with me:
The thing about time is that sometimes the joy and bliss of the present can actually reach back in time and almost change the events of the past. Now when I recall that terrible day I think, “It was just her. Our sweet, spunky, amazing little girl. It was her all along.” And now I wouldn’t change a thing.Wow! Yes, yes all of that. Thank you for putting into words exactly how I feel about that day, that feels so long ago but also like it was yesterday.
I know that she’s going to be fine. This is her life, it will always be her life and she won’t know any different. I am the one who has to come to terms with her life being different than how I imagined it. That being said, if Spina Bifida comes with her, then I’ll take it because I want all of her. It's taken me a long time to believe that. There are still days when I wish SB away, but I banish those thoughts quickly because it would change Leah. And I love her just the way she is.
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