What's New?

Well, what is new in Leah's life lately??  Lots of things!  And thankfully nothing really SB-related is going on.  That's always good news.  July ended up with a lot going on and moved in a very busy August.  Leah and I came back from our trip to visit my family on Wednesday and we just barely missed seeing Ty at the airport... literally, by about 2 hours.  He came home on Friday from a work trip and then we had friends in town over the weekend.  Leah's little boyfriend, Westin and his parents came down from North Dakota.  Westin is just a couple months younger than Leah and he also has SB, and he is just about the cutest little boy there is.  We had another family over Saturday night for a cook-out whose daughter, just a few months older than Leah, also has SB.  What a great weekend for us to spend with our friends.  It's really nice to be able to compare notes and ask each other questions about our kids' care and doctors and what works and what doesn't.  We've been really fortunate to have a great little community here.  While I love talking to other parents, I also really love that Leah is around her own people.  It will be important for her to learn from them as well and find others to relate to who are just like her. 

Then I had just a day to repack my suitcase and headed down to Wichita, Kansas, on Tuesday.  I work with a sales team and we had our annual meeting there this year.  Last year was great as our meeting was in Minneapolis and I wasn't ready to leave my 9-month old baby for 4 days.  4 days is a long time, especially when our mornings started at 7:30 and most nights were until at least 9:30.  Boy was I tired at the end of the week!  I know I should enjoy my time away, but I didn't sleep well and missed her like crazy.  I think she missed me too because she would not let me put her down all day.  Daddy did a great job taking care of everything around the house while I was gone.  She had a great time with him and they were both alive when I came home... which was really my only expectation.  Laundry?  probably not.  Cooking dinner?  not really.  Alive and breating?  check.

What else is new with Leah?  Well, she turned 21 months old on Saturday.  Wow, just a few more months until her 2nd birthday.  Her little personality has really come through.  She is hilarious.  It's really fun to see that she has a sense of humor.  She has several words, mama, dada, baby, bye-bye, doggy/monkey/donkey/ducky/kitty is all the same word, and she says minn-ahhh for kitty, which is just about the cutest thing.  She also says her own name, la-la, and she can say Izzy, the dog next door.  Then there are still a few signs in the mix, like more, please, milk, all done, and thank you.  I was surprised today when we were working on colors and she knows a few of them.  That certainly isn't my doing and I'm glad she is learning something at school! 

Speaking of school, we had a moment of panic yesterday because we were still on the waiting list for the fall.  When we enrolled Leah back in June, they told us that they were full in September but they would put us on the waiting list.  That was fine because we really needed her to go somewhere new and we were hopeful that a spot would open up for her.  I talked to an enrollment coordinator yesterday and she said that Leah was still on the list, and that we should start looking for other options.  The only way Leah would get in would be if another child left the program.  Of course we got very nervous.  We don't want her to leave and we also would have a short period of time to find something else.  Ty talked to one of her teachers yesterday to ask about how the waiting list works, and she and another teacher talked with the enrollment coordinator to let them know how much they really wanted Leah to stay.  That meant a lot to us and just goes to show how much they love her like we do.  Thankfully we got the call this morning that they found room for her!  Seeing what she's been able to learn and the way they love her reinforces for me what an amazing place this is.  This is the absolute best place for her. 

Now the busiest part of our summer is over.  We just have to get through the last couple weeks of our home renovation.  What started as a 5-week project has turned into 9, though we knew going into it that it would probably take longer.  We'll both be glad when it's over so we can have our garage and driveway back to normal.  I also cannot wait to see everything finished.  We did a few must-do items, like new roof, siding and a few windows.  We also did some cosmetic updates like new lights, painting and stonework.  Our 80-year old house was looking a bit worn and this will set us up to be here for a long time. 

Our next big event is a wedding.  My brother is getting married in a few weeks, and Leah is the flower girl.  I'm not sure how she'll do with it and there's a big question whether she'll actually make it down the aisle or not.  She's getting really good in her wheelchair, so I'm thinking about bribery... just need to figure out what will be incentive enough to roll through the church in front of 300 strangers.  I'll keep you posted!

Special Needs Spotlight

I have become a big fan and follower of many different blogs.  A lot of them are of other SB moms, but there are others I follow whose kids have other special needs, like Down's Syndrome or dwarfism or micro-prematurity.  There is one blog I found of a mom whose daughter was born with a rare condition called Microgastria and Limb Reduction Complex.  She has 2 darling little girls and another one on the way and has a great blog.  It's refreshing to read about another family going through similar challenges and seeing how they find humor and joy in the everyday.

Anyway, part of her blog is to have a weekly Special Needs Spotlight where she invites a parent or child with special needs to share their story.  Guess who is the spotlight for this week??  LEAH!!  It makes me a little bit nervous to start sharing my little corner of the Internet with more people, but it's also a great way to promote awareness of Spina Bifida and show others what it means to live life with a disability.  Ty and I were given such a grim prognosis of Leah when we got the SB diagnosis, and our goal has always been to try and help other families getting the same news, for them to see what a blessing Leah is to us.  If we can help one other couple, then it will all be worth it. 

I am very proud of our little girl and hope I make my family and extended SB family proud by our spotlight.  You can read all about it here:

http://www.thislittlemiggy.com/

At the top of her blog is a section called Special Needs Spotlight where she keeps the history of all the past spotlights.  You can browse through some of them and read about the amazing stories.  It's how I found a few of the blogs I now follow.  Enjoy!

*** UPDATE ***

If you visit the link above, it will take you to the full blog with the most recent post up at the top.  You can scroll down to find Leah's spotlight, or you can go to it directly:

http://www.thislittlemiggy.com/2013/08/special-needs-spotlight-leah.html

Exciting July

It is the last day of July, and we had a very busy and exciting month.  Now I'm in a lull before the next busy wave of activity happens.  3 weekends ago we welcomed my brother, sister-in-law, their boys and my parents to town for a few days.  They came up on Friday afternoon, and we had a pretty jam-packed 3 days.  On Saturday we went to the Mall of America to see the aquarium and then of course we had to get on a couple rides.  It was so cute seeing Leah on one of the little rides.  It was one of those little carousels that you put a dollar into, and she kept signing for "more" when it stopped.  Of course her daddy and grandpa put plenty of money to keep her happy.  The rest of the weekend we hung out, ate good food, went to the pool, took a little boat ride around the lake, and spent some fun time together.  I love having company... but I also love having my quiet house back :)

The following weekend we thought we'd have a nice relaxing time around the house, but we ended up with a sick kiddo.  I'm not sure exactly what happened, but she felt really warm on Saturday with a low-grade fever.  It was around 100 and she was acting her normal, happy self so we weren't too concerned until Sunday morning when she had a 104 fever.  That got our attention!  We talked to Dr. Marker and watched her pretty closely.  She ended up sleeping for almost the entire day and just wanted to be held.  We had to keep her home from school on Monday, and then thankfully her fever broke Sunday night and she was much better by Tuesday.  

Then this past weekend Leah and I were back to Illinois to spend some time with my family.  We did a very long weekend - Thursday night to Wednesday morning - so a total of 5 full days.  It was great!  I hadn't spent that much time back home in several years, and it was nice to be able to spend time relaxing and hanging out with my family.  Leah had a great time with her cousins.  I brought her zip-zac along with us, which was interesting bringing through the airport.  Luckily Ty was able to get it to fit perfectly on top of my roller bag, though it was dang heavy.  But it was worth it to see her keep up with the boys.  She loved watching them and chasing my mom's 2 cats... or "minn-ahhs" as she calls them (her word for meow).  So cute!  We got home this morning and I dropped her off at daycare so I could get a few things done around the house.  

We have some friends coming to town this weekend.  Our friends from North Dakota are coming down with their little boy who also has spina bifida.  He's just a few months younger than Leah, and we are so excited for them to come for a visit.  We're going to have a few other friends with SB kiddos over for dinner.  It will be nice to get others together and let our little ones play together.  

In the meantime we are in the midst of home renovations.  About a month ago we got a new roof and gutters.  Now we are working on putting on new siding and some new windows.  It's been a long and slow process.  The workers have been here late most nights and were in the house to do the trim work around the windows.  Our garage is full of equipment and until this afternoon we had a big dumpster sitting in our driveway.  It's been a long few weeks and we are very excited to have it done.  It is a project that we need to do.  Our house is old and needs these updates.  We are doing this because this is where we plan to be for a long time.  It will look great when we're done, but it will also be a place where Leah can grow up.

I'll post some pictures of our exciting weekends and home improvement projects soon.  I'm taking advantage of the rare night that Leah went to bed early.  She's been on a later schedule recently.  It's great that she's sleeping until around 7, but it means she is staying up until after 8:30, so I haven't been able to get much done in the evenings.  Check back again when I have some more time.

Happy 4th of July!

Happy Independence Day!  Last week was a goofy week with a Thursday holiday, and as much as I love having time off, I'm also looking forward to getting back to normal next week.  I only work 4 days/week and have Tuesdays off, so I was only in the office every other day.  Leah was also having a hard time sleeping so it kind of got me off-kilter.  I did work for a bit on Friday, one of the only people who was actually in the office, but I was a little bit foggy.  I forgot to bring Leah's wheelchair to school that morning, and then I got to work and had forgotten my ID badge, which also has my desk keys on it.  AAHHH!!  Here's hoping I get back on track!

We had a very fun 4th of July.  Our little town had a pancake breakfast, yummy!  Then we went to the kiddie parade.  It gets kicked off by the old-time fire truck and then all the kids ride their bikes or get pulled in a wagon.  Last year we took Leah and watched, but this year we decorated her wheelchair and let her be in the parade.  She had such a great time waving at everyone and pointing to all the kids.  Events like this are a little hard for me because it's very obvious that that she's different and I see people looking at her and watching her a little more closely.  But I also realize that she could care less, and she was so happy to be joining into the fun.  I had my 30-second pity party and then I could share in the fun and excitement of the parade. 

The parade was just a short ride around the block and then all the kids got popsicles and balloons.  Leah was a total mess!  Her hands were filthy from pushing her wheels, and so was her face after she rubbed her eyes.  Then add in the  mess from the  popsicle that she held, not by the stick, but right on it.  She had syrupy stickiness dripping down her face, on her hands and her shirt.  And she was loving every single minute of it.  It was awesome!  It was a good reminder to me to always pack wet wipes and hand sanitizer in her chair.  Thankfully the weather was absolutely beautiful and not as unbelievably hot as it was last year. 

Her wheelchair all decked out.

 

Here are a few action shots of us at the parade.  Look how much fun she was having!

You can just barely see the dirt marks on her face.  And see how she's holding her popsicle??!!  She is hilarious :)

Summertime Fun

It's finally summer!  Thank goodness because I was starting to get a little stir crazy not being able to go outside.  Leah absolutely loves being outside, whether she's sitting in her chair on the patio or rolling around on the driveway or going for a stroller ride.  Coming inside makes her shake her head NO and point back outside.  Last weekend we went to get her a water table, and her little zip-zac fits perfectly at it.  She loves sitting there, dumping water all over her lap and pushing the toys around.  We've been having fun watching her learn and explore outside.  She points to airplanes in the sky, listens to birds, watches squirrels in tree and touches the trees.  I need to figure out a way now for her to be able to roll around the grass in her chair.  She can get around the driveway but off-roading is a little more difficult.  If anyone has a brilliant idea, please let me know!

We've had some excitement already this summer.  Two weekends ago we had a pretty big storm roll through town.  Usually we are spared a lot of major damage but this storm rolled straight down our street, literally.  All of our neighbors on our street lost a tree... and not just a branch, an entire tree!  It came through very quickly on Friday evening and lasted less than an hour.  We spent much of Saturday getting out the chainsaw, cleaning up the debris and taking lots and lots of branches up to the yard waste.  We were pretty happy when our power came back on after 24 hours, especially since it was a pretty hot and muggy weekend.  

This was the tree we lost, it went right across our driveway.  We're doing some work on the house, and it fell on top of the dumpster.  Otherwise, Ty would have lost his car!

Some of the damage in the backyard.

This is the view down the street where trees toppled the power lines.  The line went across the street and our utility workers were busy getting our power back up and running.

I've also been busy working on a few pinterest-inspired projects.  Usually I just pin things but don't really do anything with them (except for a few recipes that I have tried).  My first project was to find a way to get some of Leah's artwork displayed.  She brings home a few things a week and they were starting to pile up on the counter.  We have a door between our kitchen and dining room, so I glued 2 strands of ribbon vertically over the door and then found really cute little clothespins.  Now I have a place to hang her cute works of art.  My 2nd project was to get my car organized and stocked full of things I need when I'm out and about so I don't need to lug around a diaper bag.  I got an organizer for both my and Ty's cars and stocked them with diapers/wipes, changes of clothes, hand sanitizer and sunscreen and snacks.  So far it's been nice having everything in the car, but we'll see how well we keep them filled.  Yes, those are pretty lame and I will not be venturing into a new career as a blogger! but it was fun to actually do something I've pinned.

Here is the artwork door.  I think it turned out pretty nicely!

Another Good Clinic Visit

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. 

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.