We just finished a big day of appointments for Leah. We were very busy today but the good news is that we got pretty much all good news today. SB clinic days are always stressful because they are long with a lot of doctors to see, but also because it's when she gets a full check up and there could always be news we don't want to her. That wasn't the case today! We started out in Radiology for a C/T scan to check her shunt and ventricles. The C/T scan did not go well for Leah. She has to be totally strapped in and isn't able to move, which she did not like. Tears, lots of tears, ensued but she kept still enough to get some good shots.
Then we went for a pretty lengthy test of Leah's bladder and kidneys. I don't want to go into too much detail because Leah will be a big girl someday and could be incredibly embarrassed about her mom sharing this with everyone, so I'll try to share the information while still respecting her privacy. I've talked about the most important thing at this time is to keep her bladder and kidneys healthy, which is thankfully what we're doing today. SB kids (and really, everyone with a spinal cord injury) have different sensation, feeling, and control over bladder and bowels. Right now Leah's bladder muscle is very weak, so she isn't able to hold her urine and it leaks a lot. That is good because it means her bladder doesn't have any reflux up into her kidneys. It also means that she's much less likely to get a bladder or kidney infection... again our #1 goal is keeping those kidney healthy. Goal achieved! As she gets older - 3-4 years old - she'll need to be dry to go to school. We'll be able to do a few different things to help her with that.
After being in radiology, we made a stop in the hospital cafeteria and then found a quiet spot to give Leah a quick catnap before heading to our neurosurgeon. Again, good news! He said her ventricles looked great and the shunt is still working. Woo Hoo!! That is always a great thing to hear the neurosurgeon say. I remember at this time last year we were constantly adjusting the pressure on her shunt because it wasn't working as well, all leading up to her shunt revision. He said we probably didn't need to come back to for a year. Double Woo Hoo!! I asked him about the likelihood that a shunt fails now that she's outside the first year and getting close to 2. He said that there is a very high likelihood of failure in the first 2 years and then it goes down from there. He also said something very interesting, which is that the majority of shunts fail within the first 2 weeks of placement. So if you look at someone's shunt revisions over a lifetime, they tend to be clustered together in a very short period of time. Since Leah is almost 2 and she's had this current shunt for 7 months now, her chances of revision are decreasing. Now that doesn't mean we shouldn't still be vigilant and it doesn't mean I'll stop thinking shunt failure everytime she gets sick, but it does mean that the odds are in our favor. Another thing he said, which I kind of found funny, was that her head is so perfectly shaped. He said that sometimes kids with shunts or hydrocephalus or other brain abnormalities have misshapen heads. I've never noticed anything in other SB kids I've seen, but I'm also not a neurosurgeon. The first thing I thought about was how fortunate I am that we take Leah to a cranial-sacral therapist, and I truly believe that this therapy has helped her in sooooo many ways.
Our final appointment was with Dr. Marker, Leah's SB doctor, and probably one of my favorite people. I just love him! He reviewed the C/T scans (as an aside, Dr. Marker is so old-school that he still requests actual films, the only doctor that doesn't access them on the computer so we have to carry this huge envelop around) and agreed with neuro that everything there looks good. He also talked to us about her bladder tests and was very happy with the results. Eventually she will need some interventions to keep her dry for school, but no concerns today with anything. He also started asking us about whether we want to get her up and walking because he think she'll be able to. Ummm, what??!!! He said given her ambition and the little bit of strength in her hips, she could get into some Hip-Knee Orthotics and walk with the help of crutches. Now, this will probably take a lot of time and coaxing for her to actually get there, as it will be much easier to get around in her chair. But Ty and I both agree that she'll be able to do it. Everything she learns at P/T, she's able to figure out in a couple weeks. We think she'll be motivated and would really enjoy being up and walking, so when she's around 2 1/2 or 3, we'll start talking about what equipment she will need to get this done. All in all, a great last appointment. He wants to see us back in 6 months, and I hope we don't have to see him before then. It's funny, he's one of my favorite people but I hope to not see him very often!
We finished out our day at the DMV. We finally got the paperwork to get disability plates on our cars. This means we can park in the handicapped spots, which will make it so much easier to get her in and out of daycare and everywhere else we go with her. It will also motivate us to take her chair much more often than we do. Even though it's so much easier to carry her or put her in a cart or stroller, we really do need to get her out in her chair as much as we can. That's kind of a big milestone for us.
Great day, what a relief. The best part of the day was just seeing how happy Leah was all day. Except for some complaining during her morning tests, she was in a great mood all day. She loves to wave at everyone in the elevators and blow kisses to the nurses. I just love that girl.
Tuesday, June 25, 2013
Sunday, June 16, 2013
New School
Leah’s first week at her new school went very well. On Monday she had absolutely no problem with me dropping her off. Wednesday and Thursday were much harder once she realized that this was her new place. I had been having her roll into school by herself in her new chair, but that wasn't going too well. Friday morning I changed up my approach and carried her in (while wheeling the chair, balancing her tray and lugging a big bag with all her stuff… yeah, that was fun!). Drop-off went much better since she could give me a hug good-bye and I could sneak out while she was playing with toys. Hopefully by next week she’ll be much more used to the routine and won’t get as upset when I leave her. This is a pretty big adjustment for her, being a big girl, using a big girl chair, sleeping on a cot (that is hilarious, by the way!!!) – or rather, not sleeping on the cot. I think her average nap this week was 25 minutes. It doesn't surprise me one bit. The child just does not like to sleep.
The teachers here are so wonderful and welcoming to her. Right now Leah has a 1:1 aide for 2 hours each day – 1 hour in the morning and another in the afternoon. She gets individual time at their peak times of the day, mostly just to make sure she’s staying safe and not falling out of her wheelchair or getting trampled by the other kids. Her room is made up of other toddlers. There are about 20 or so kids in the room, but since some only come a few days a week or only in the morning, there’s maybe 10 at a time. They have a lot of different activities, they play games, have a sensory table and do snack time. All that time Leah is around kids her age! That’s just so awesome! Earlier this week when Ty picked her up, she was outside rolling around in the grass with a few other kids. The playground there is almost totally accessible in a wheelchair with big ramps and a hard surface for her to roll around. Her teachers made a schedule just for Leah of how much time she spends in her wheelchair to make sure she’s not in it too much or too little. I really appreciate all their extra touches and the way they pay so much attention to her needs. We are so, so, so, so blessed to have her there… and that a place like this even exists! And so close to our home so that it’s right on the way to work!! This is THE place for her, much better than before.... so much better that I can't even believe we're actually there. Now, here's hoping she quickly adjusts to this new routine.
Sunday, June 9, 2013
Big Changes
We have very big changes happening with Leah these days. Big changes mean our old way of doing things is gone and even though it's mostly a good thing, it's also a reminder that she is different, that we are different. This is an update that I've been really dreading because it's hard. Saying these words, well typing these words, hurts my heart a little bit. You may remember a few weeks ago I posted that we were fighting with Leah's daycare about moving her into the toddler room. We finally arranged a time for Ty and I to observe her in the toddler room along with the director of her daycare center. She was in her zip-zac and spent an hour playing and singing songs with the other kids. Ty and I thought she did great and while there were some things she'd need some extra help with, we were very excited about her being able to transition. Apparently the director of the center thought differently.
We met with him a few days later and he had written up lots and lots of reasons why she would not be able to move. Some of the reasons he gave were that she could roll over the other children's hands and feet and she wouldn't be able to sit on her own for circle time. While yes, that is technically true, why should that be a deterrent? Couldn't they find a simple solution to 2 very simple problems? It felt like he was grasping at straws and finding very petty reasons why they could not or would not accommodate her. His final comment was that she could not move to the toddler room and she could not stay in the infant room after 18 months. Ummm, what??!! She had just turned 18 months, so I asked him point blank, "Are you kicking us out?" His response was, "You can draw that conclusion." So that's how you treat a child who you claim to "love and adore." We did some pushing back and he agreed to let her stay in the room for 3 months while we found alternative child care arrangements. I was ready to pull her out that day, but of course my practical self had to restrain because we still have jobs and didn't have anything else lined up. The very fortunate thing is that we have a wonderful organization in town who does daycare and preschool programs for children with special needs, but also have mainstream kids there. We are even more fortunate that Leah got in and is able to start this summer.... tomorrow in fact!!
I'm so disappointed that this is the way things had to be. The daycare we are leaving is just down the street from us and these are kids who she'd eventually be with in school. It's a small center and it did have a family-life feeling. I loved her teachers, especially one of them in particular, and I know she and Leah are going to really miss each other. And then there's this business of being reminded that she's different. I think that's the hardest part for me, her being kicked out simply because of her disability. It makes me sad for her because someday she'll understand, and it makes me sad for the other kids there who could learn from her. In the end, we don't want her to be where she's not welcome, which is why we're not going to fight to have her stay.... even though we know they are violating Americans with Disabilities Act laws. It's more important for us to put her somewhere that she is welcome and will be well taken care of. My heart breaks a little that we were treated this way, and even moreso that she was treated this way.
My heart also soars because of her new school! We received the exact opposite treatment from them in that they did everything they could to make things work. We could tell how much they wanted Leah to be there and how strongly they believe in their work. There's a lot of excitement about getting Leah to a place where she can spend the day with her peers - her class is made up of kids who are 16-22 months old - and she'll be mobile in her new wheelchair. It is true that when one door closes, another opens. In our case, this new door is opening to an amazing opportunity and will be a much better place for her. I am very thankful for this new change in our lives.
We met with him a few days later and he had written up lots and lots of reasons why she would not be able to move. Some of the reasons he gave were that she could roll over the other children's hands and feet and she wouldn't be able to sit on her own for circle time. While yes, that is technically true, why should that be a deterrent? Couldn't they find a simple solution to 2 very simple problems? It felt like he was grasping at straws and finding very petty reasons why they could not or would not accommodate her. His final comment was that she could not move to the toddler room and she could not stay in the infant room after 18 months. Ummm, what??!! She had just turned 18 months, so I asked him point blank, "Are you kicking us out?" His response was, "You can draw that conclusion." So that's how you treat a child who you claim to "love and adore." We did some pushing back and he agreed to let her stay in the room for 3 months while we found alternative child care arrangements. I was ready to pull her out that day, but of course my practical self had to restrain because we still have jobs and didn't have anything else lined up. The very fortunate thing is that we have a wonderful organization in town who does daycare and preschool programs for children with special needs, but also have mainstream kids there. We are even more fortunate that Leah got in and is able to start this summer.... tomorrow in fact!!
I'm so disappointed that this is the way things had to be. The daycare we are leaving is just down the street from us and these are kids who she'd eventually be with in school. It's a small center and it did have a family-life feeling. I loved her teachers, especially one of them in particular, and I know she and Leah are going to really miss each other. And then there's this business of being reminded that she's different. I think that's the hardest part for me, her being kicked out simply because of her disability. It makes me sad for her because someday she'll understand, and it makes me sad for the other kids there who could learn from her. In the end, we don't want her to be where she's not welcome, which is why we're not going to fight to have her stay.... even though we know they are violating Americans with Disabilities Act laws. It's more important for us to put her somewhere that she is welcome and will be well taken care of. My heart breaks a little that we were treated this way, and even moreso that she was treated this way.
My heart also soars because of her new school! We received the exact opposite treatment from them in that they did everything they could to make things work. We could tell how much they wanted Leah to be there and how strongly they believe in their work. There's a lot of excitement about getting Leah to a place where she can spend the day with her peers - her class is made up of kids who are 16-22 months old - and she'll be mobile in her new wheelchair. It is true that when one door closes, another opens. In our case, this new door is opening to an amazing opportunity and will be a much better place for her. I am very thankful for this new change in our lives.
Saturday, June 8, 2013
Friday, June 7, 2013
On a Roll
Little Miss got her big girl wheelchair this morning. What an exciting day for us! We really wanted to get it this week, so Leah and I went to the medical supply company to pick it up. It was actually a really great experience to go there. The man we were meeting there, who's been working on her chair, was in a wheelchair himself. I thought that was so cool. He had a workbench and made a few different modifications to her chair after seeing her in it, and he was able to do everything anyone else could. And he was really great at his job! It gives me hope that Leah will be able to do something she's really good at.
I won't lie, when we walked into the warehouse and I saw her chair sitting there, it choked me up a bit. It's just so final. Getting a wheelchair at 18 months kind of seals the deal. I'm still hopeful that she'll get up and walk someday, but it will probably take a lot of technology and won't be her everyday way of getting around. This chair will be her legs. But then we got her into it and she was so happy. They did make a few adjustments to it, like moving the footrest down a little bit and the side bumpers in a little closer. The nice thing about picking up the chair is that while we were waiting, all the girls from the office came in. We got to see all people we've worked with throughout the process, and they got to meet Leah! Our main contact, who had visited us with the test chair a few months ago, was so excited to see Leah in her chair. They don't usually get to see their clients with their new equipment, so this was really special for all of them. Leah was a little shy at first, but she started warming up and then showed off all her moves. She was wheeling and turning and being so darn cute.
This chair is very similar to the one in the video at the roller rink. It has a few cool gadgets, including a tray that she can use for reading or coloring and a backpack for her to carry her stuff. It also has a handle on the back (which also easily pops on and off) for us to help steer or push her. This will be very helpful when we're out in public. I'm really looking forward to getting her out in public with the chair, I wonder how that will go!
I'll get a few pictures of her new chair up over the weekend. Check back soon!
I won't lie, when we walked into the warehouse and I saw her chair sitting there, it choked me up a bit. It's just so final. Getting a wheelchair at 18 months kind of seals the deal. I'm still hopeful that she'll get up and walk someday, but it will probably take a lot of technology and won't be her everyday way of getting around. This chair will be her legs. But then we got her into it and she was so happy. They did make a few adjustments to it, like moving the footrest down a little bit and the side bumpers in a little closer. The nice thing about picking up the chair is that while we were waiting, all the girls from the office came in. We got to see all people we've worked with throughout the process, and they got to meet Leah! Our main contact, who had visited us with the test chair a few months ago, was so excited to see Leah in her chair. They don't usually get to see their clients with their new equipment, so this was really special for all of them. Leah was a little shy at first, but she started warming up and then showed off all her moves. She was wheeling and turning and being so darn cute.
This chair is very similar to the one in the video at the roller rink. It has a few cool gadgets, including a tray that she can use for reading or coloring and a backpack for her to carry her stuff. It also has a handle on the back (which also easily pops on and off) for us to help steer or push her. This will be very helpful when we're out in public. I'm really looking forward to getting her out in public with the chair, I wonder how that will go!
I'll get a few pictures of her new chair up over the weekend. Check back soon!
Monday, June 3, 2013
Vacation!
We took a little family vacation last week and had a ton of fun. We went south of the Cities to Lake City, which is on the Mississippi River. It's a cute little town with shops and restaurants and we stayed in a house that overlooked the river. Being from a river town myself, I had a preconceived notion that staying on the river would be dirty and smelly but I was pleasantly surprised! Our house was on a small bluff and we had great views up and down the river. It's pretty much a necessity to stay in a house now that Leah is here. She goes to bed so early that our alternative is sitting in a dark and quiet hotel room for several hours!
After spending the Memorial Day weekend here in town, we headed down there on Monday afternoon. We visited the National Eagle Center in nearby Wabasha, and went back to Wabasha the next day to go to the largest independently-owned toy store in the country. That was so cute! It had lots of different rooms with books, trains, tea parties, dolls, and toys. Leah loved the big wall of rubber duckies, and she really loved playing with the train set. It also had an indoor carousel, which she really wanted to like but didn't. She did like the llamas they had outside! Our biggest miss on the toy store was that we forgot the zip-zac! She would have had a great time wheeling herself around and getting to everything she wanted to see.
We had a few fun excursions but we also had fun hanging around the house. Our weather was chilly and rainy but there were a few moments of sunshine, and we were able to get outside with Leah in her zip-zac. She rolled all over the driveway and even got up the courage to roll across the street to catch the ducks she'd been pointing at all week. So great to see her independence! We came home in time to have another long weekend at home. What a great time off!
After spending the Memorial Day weekend here in town, we headed down there on Monday afternoon. We visited the National Eagle Center in nearby Wabasha, and went back to Wabasha the next day to go to the largest independently-owned toy store in the country. That was so cute! It had lots of different rooms with books, trains, tea parties, dolls, and toys. Leah loved the big wall of rubber duckies, and she really loved playing with the train set. It also had an indoor carousel, which she really wanted to like but didn't. She did like the llamas they had outside! Our biggest miss on the toy store was that we forgot the zip-zac! She would have had a great time wheeling herself around and getting to everything she wanted to see.
We had a few fun excursions but we also had fun hanging around the house. Our weather was chilly and rainy but there were a few moments of sunshine, and we were able to get outside with Leah in her zip-zac. She rolled all over the driveway and even got up the courage to roll across the street to catch the ducks she'd been pointing at all week. So great to see her independence! We came home in time to have another long weekend at home. What a great time off!
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