September 8th, 2015- The Orthotics

We had a great summer together, the kids and I.  We didn't get to take a vacation this year because Russell didn't have any leave from his job until he'd been there a year.  The kids and I did spend a week at my parents' house while my grandmother visited from Florida.  She loved getting to spend time with all of the kids and we were so thankful she got to come up to visit!

One cool thing that happened was I won 2 season passes to the local water park.  So Luke and I got in for free anytime we wanted to go.  Kids 2 and under are free, so Ally got in for free too, so anytime we wanted to go we just had to pay for Ben.  This was the first summer Ally got to go swimming, and let me tell you- that girl is a fish!  She had a great time in the water, and was very brave.  Check out this video at the water park that I shot:

She also had her first swim lessons.  She did great!  I don't have any pictures of swim lessons unfortunately because I had to be in the water with her and Russell was usually not at the lessons with us, but here are some other pictures of her from the water park this summer.

My cute tutu bathing suit!

Wearing Bubba's goggles!

So much fun at the water park!

Our other summer adventures included Melody Makers & story time for 0 - 16 month children at the library known as book bugs.  She loved the books and songs and getting to interact with the other kids.  In fact, Ally has really grown to love books and being read to.  She will often bring books to us from her room and stand there yelling until we pick her up, put her on our lap, and read.  Some of her favorites include "We're Going on a Bear Hunt", "The Tale of Peter Rabbit", "Night Night Blessings", and "Chicka Chicka ABC".

The most 'exciting' update is that Ally finally got her orthotics!  She has bilateral Ankle Foot Orthoses (AFOs).  Last week I took a half day off for 2 appointments for Ally.  One was an intake appointment for a new music program being run by Easter Seals (that she does Early Intervention through).  This program is run by a certified music therapist who will write goals specifically for Ally for each week (though it is a group session).  She loves music so I think this is going to be great for her.

Her second appointment was to get her orthotics.  I made a mistake and actually came to her appointment a week early (oops!) but they thankfully they fit us in anyway, just with a different guy.  He brought in her orthotics and measured the place to cut them off at the toes.  He left to cut them and returned and showed me how to put them on her.  I didn't know to bring socks, so we skipped that step.  I had brought the shoes Russell's parents had bought for Ally when we went shoe shopping for the boys for school.  The guy tried to put them on her but felt they would probably be too tight and get torn up pretty quickly.  He told me I would probably need something bigger.  When we went shopping with the orthotics, I should look for something that fit snuggly in the store, and we could always rip out the insole padding once we took the shoes home.

So that Friday we went back to the shoe store.  We returned the shoes and went looking for something else.

First I had to get the orthotics on her feet.  Man that proved to be difficult!  They fit very snuggly and don't give very much, so you have to do it just right.  We also found that the socks I had brought were not quite high enough to cover the height of the orthotic.  So we bought socks at the store too. 

The bilateral AFOs!  I picked out all the colors and materials for her.  Love the butterflies and purple!

Stage 2- with socks!

Once I got the orthotics on, the challenge was finding a shoe.  First we tried some 'high top' shoes, thinking that would be good because it would cover the whole orthotic.  But we soon discovered that that was a bad idea.  So then we found a couple of regular sneaker type shoes.  Two of them seemed to work well, but we finally ended up with the pair that was stride rite (a great brand) and a size smaller than the other pair (which were very brightly colored and lit up when you walked- very cool I have to admit!).

Shoe shopping!  She was running all over the store in her shoes.

She had to have a carousel ride at the shoe store.

Since then she has worn them everyday.  The guy who fitted her said she needed to wear them with shoes anytime she is walking.  So basically she wears them from the time she wakes up until bath time in the evening.  I had asked if she would have trouble with wearing them or be uncomfortable, and he said it could be a possibility (though she not have a redness or blisters as a result, and if she did to call them right away).  I was expecting to see her not walking as much, asking to be carried or sitting a lot more.  But true to form, our Ally girl is tough as nails and this doesn't seem to have fazed her one bit.

The winners!  They are a size SEVEN!  She went from a THREE to a SEVEN!

She doesn't mind having them put on at all.  She has always loved shoes and often we wouldn't even put any on her because she didn't walk around much in public places anyway.  However she got to the point that when we would announce "Get your shoes on!" she would run over and find her shoes and sit to have us put them on her.  So she actually sits still and lets us put on her orthotics every morning.

I had asked the guy when would we know when she wouldn't need orthotics anymore.  He said that whenever her feet and ankles were the way they were supposed to be she would no longer need them- but when that would be of course he couldn't say.  So he had us make an appointment for 6 months just to check in and now we are on our own.

The next few weeks and months should be busy ones.  We have all started back to school and work, so Ally is back to staying with my in-laws during the day.  They will be taking her to story time for 18 - 24 month olds as well as the music program through Easter Seals.  She has her 18 month check-up in a few weeks and a neurosurgeon appointment next month.  So along with the fun of fall we will have plenty to update you with.

Our beautiful 18 month old girl...

...but she can get pretty upset when she doesn't get her way!

Oh, one more thing.  So Ally turned 18 months old earlier this week.  I realized I hadn't gotten any pictures until that evening.  Ally had already taken her bath and was in her pajamas and the boys had just finished up their shower.  Our tub is extremely slow draining, so it looked like they had taken a bath.  While they were getting their towels- she climbed right into the tub, jammies and all!  So we definitely got some pictures then.  Our girl is so spunky and resilient, and we are so blessed everyday that she is part of our family!

July 6th, 2015- The Walk

I have been meaning to post for SO LONG!  We are smack dab in the middle of summer, which means my to-do list is long but motivation comes in short bursts.  But thank you for our continued interest in our girl.

We have had a lot go on since our last post; and yet, not so much either it feels like!

May 1st we had our annual meeting with Early Intervention.  Every year they have to do an annual evaluation of the child 
with all of the specialists and the case worker to check on progress and determine what the goals for the child are for the coming year and re-evaluate current services and decide if they need to be modified.  So our case worker was there, along with the physical therapist.  They did an overall evaluation of Ally's skills in all areas- and I was overjoyed with the results!  At the time, Ally was almost 14 months old, and her adjusted age was 12.5 months (approximately).  Almost all areas were at her adjusted age- and most were better!  These areas include things like speech, fine motor, gross motor, emotional, social, etc.  She is doing so well, you'd never know she had any diagnosis whatsoever.

Our physical therapist has been especially pleased with Ally's progress.  She has continually developed (mostly naturally) each visit month to month.  She told us at the evaluation that Ally would probably be walking independently within a week or so and she didn't see a need to continue therapy.  She did, however, say that Ally would need the orthotics to help with her balance and muscle tone.  She gave me the number to call to get that process started by getting her fitted and get them ordered and that she could stop in a few times a year just to check on her and how the orthotics were fitting and let us know when she would need new ones from outgrowing them.

Sure enough, within the next few weeks, Ally was officially walking!  She walks everywhere now, and even climbs stairs (when she can find them).  She also enjoys climbing on and off kid-sized chairs and standing up in them!  (Basically she tries climbing anything she can- tonight she climbed up a stack of thin, shirt-box sized boxes and over the armrest onto the couch!)  The other day we were at Russell's parents home where they have an inflatable kiddie pool for the kids to play in.  Once Ally was comfortable enough to go near her rowdy brothers playing in the water, she got in the pool.  And then out.  And then in.  And out.  She didn't really play in the water so much as practice getting over the edge of the pool as much as possible!  To put Ally's physical development into perspective: last week I took Ben and Ally to our local library for a puppet show.  Luke was spending the night with his grandparents that night, so he wasn't there to be the ringleader and show the younger two how to behave.  Ben probably would have sat and watched the show, but Ally would NOT stay in her stroller, and once I took her out she wanted to roam around.  I took her to the back of the auditorium to run around, but what she really wanted was to go up and down the stairs along the rows of seats.  I let her do that on one far side a few times, but then Ben didn't want to sit either, so I knew after 15 minutes into the show that we couldn't stay.  I was a bit frustrated, but I tried to think about it this way: for a while we didn't know when, or even if, Ally would be able to walk and move like she was.  And not only was she being a rambunctious toddler, she was doing it ON SCHEDULE.  Perspective truly is everything, and we are so thankful!  

One of the chairs she enjoys climbing in and out of- enjoying Luke's t-ball game!

Ally also tries to keep up with her big brothers at the playground.  She enjoys the stairs (of course), and tunnels and bridges (gulp!) and even the slides- sometimes by herself!  In addition to this, she is also able to give high fives and kisses when requested (though she doesn't always comply).  She also enjoys her 'dragon', as you can see in the video below.

So after the annual evaluation, the month of May happened.  I LOVE the month of May, because it is Dandy-Walker awareness month, but it is also an extremely busy and sometimes stressful month at school with testing and the end of the school year.  So I did not call about getting Ally's orthotics ordered.  We were supposed to have a meeting June 3rd with our case worker to go over some possible financial help with the orthotics (they are NOT cheap!) but seeing as I had not had Ally's feet measured, we postponed the meeting until I had everything worked out.  Plus, she was doing so well with her walking, I wanted her pediatrician to give the final word about whether she really needed them.

Ally's 15 month check up was June 8th.  Everything looked really good!  She's up to just over 18 lbs., and she's on the charts in all categories (the low end of the charts, but that's ok!).  However, while our pediatrician did say she think her tone has improved (YAY!) she thought she would benefit from the orthotics.  (Boo.)

So I took Ally to the orthotics place to get fitted.  Basically they made a mold of her feet.  The technician put a nylon sock up to her knee, then wrapped her foot up to just below the knee with fiberglass wrap, kind of like a cast, then sort of massaged it to mold it better to her foot and ankle.  Once it was hard enough, he cut it off of her and repeated it on the other foot.  I picked out all the colors and patterns for the different parts of the orthotic (mostly purple with some pink and some butterflies :-)  She still doesn't have them yet because we are waiting on (hopefully) some grant money to come though to help cover the cost.  My only regret with this is that she really should be wearing shoes a lot more than she does but I've been afraid to buy any for her because I want to make sure I get them big enough to accommodate the orthotic and be comfortable.  She wears a 3 right now without them, but I didn't want to get her any more shoes that she won't be able to wear (the only reason we know that is because someone gave us some hand-me-downs and a pair of size 3 shoes were in there and they are all she wears right now).

As I said before, May is Dandy-Walker awareness month.  It is also the month for Carter's Run for Dandy-Walker.  Spring is a busy time for our family because Luke plays t-ball and Russell coaches and does men's church league softball, so there are constant practices and games.  This year there were 2 games the weekend of Carter's Run, so the boys stayed home and Ally and I journeyed together to Ashburn to meet Mom and my nephew for the run.  We had a great time as usual!  I intended to help this year instead of actually walking, since it was just Ally and I.  Mom was convinced by my nephew to sign up to walk the day of the event, and they both did it!  Ally and I helped with the dunking booth and hung out at the Alliance tent.  We got to meet some new DW families and meet up with some of the ones we met last year.  I believe there were a total of 9 DW families in attendance.  It was a great even as usual, and we are already looking forward to next year!  We were unable to make the Dandy-Walker Alliance day at Nationals park since it was on Father's Day Sunday.  It would have been too much for us to try to make it back home afterwards for Russell to work and Luke to go to camp the next day.  However, we are excited to announce that more MLB parks are participating in DW Alliance day!  There was a game with the Pittsburgh Pirates stadium in May and there will be a game at the Baltimore Orioles stadium in August.  I am excited to see how awareness is spreading and there are more events for DW families.

I believe there were 9 DW families there if my count is right!  I am proud to be a part of this extended family!

One of the things I noticed at Carter's Run was the diversity of the DW children that were there.  Some, like Ally, have almost no affects from their Dandy-Walker, while others are severely affected, plus some in between.  Some have shunts, others do not.  As I interacted with these families and their children, I couldn't help but feeling something akin to 'survivor's guilt'.  We were prepared for the worst but other than shunt surgery Ally has been a very normal little girl.  It was hard to talk with families whose children use service dogs, walkers, and go to day care for adults with disabilities and then say, "This is Ally.  She has Dandy-Walker too."  I was telling my Mom about my feelings and said, "It's just not fair."  She responded with, "Don't feel like that.  Just feel blessed."  It's still hard to handle those feelings, but I do try to see it that way.

This diversity, however, also got me to thinking about this blog.  While many of you who read this are family and friends, others are those who have either stumbled here accidentally during your desperate search for information about dandy-walker or have been directed here by me from your post for information from the Dandy-Walker parents facebook page.  We started this blog to inform our family and friends of Ally's progress, and that is still a central feature.  However, the main reason I continue the blog is so that other dandy-walker families will see the hope in the diagnosis- that it is not always as terrible as doctors make it out to be.  However, I do want families to see the whole picture.  We are incredibly blessed by Ally and her progress so far, but others have more issues and stumbling blocks in their journeys to work through.  So I am hoping to add a new feature to the blog in the near future to help with this idea, so stay tuned!

Finally, on June 18th we celebrated Ally's one year 'shuntiversary'.  She has now had her shunt in place for a whole year without any problems.  I continue to pray for many, many more complication-free years, but we just never know when there may be an issue.  We just continue to watch and pray.

 Pictures one year later.  You can barely see the scar or the shunt sticking out anymore.  She's actually starting to get some hair!

So Ally is now 16 months old.  It is so hard to believe!  We had family pictures done in May as is our tradition, and the final picture is her 16 month picture that I took.  Our girl is strong and growing and beating the odds.  Thanks for coming alongside our Ally girl during her journey.

16 months!

April 8th, 2015- The Catch-Up

I apologize for our silence here for so long.  I meant to post after the big snow in February as I promised in the last blog, but snow days tend to make me so lazy that I can get next to nothing accomplished.  So, to make up for that here are a few pictures of Ally's first snow.

 

 

As you can see, she thought it was fun at first, but after a little bit she was not amused, especially when we laid her down to try to make a snow angel.

 

A few weeks later our Ally girl turned 1!  (And I meant to blog about it...)  We had a small family gathering with cupcakes to celebrate- allowing Ally to smash one of course!

A few weeks later we had her official birthday party!  She had a ladybug themed party at Melody Makers.  They did a 45 minute music session with all of the kids first.  I really love our Melody Makers- our kids have done 'lessons' there every summer except last and Luke even got to do it in preschool last year once a week.  They do a great job of interacting with all kids, regardless of their ages, and all the kids love Gigi the giraffe!  After the program we had snacks and cake, and opened gifts.  I love planning the kids birthday parties and making everything themed, as you will see below.  I was especially excited to be doing the first birthday for our Ally girl!  Enjoy some pictures from the party.

 I am especially proud of my strawberry ladybugs crawling on grapes under the glass.  The ladybugs below are just babybel cheese colored with a marker on the red wax lining.

 Chocolate-covered pretzels with red M&Ms, and ladybugs made from sliced apples and raisins.

Ally's smash cupcake and ladybug cake.  Our friend makes amazing and delicious cakes and has made them for all of my kids' parties.

 Singing 'Happy birthday' next to cousin and Bubba.

 

Having lots of fun during Melody Makers!

 

 Do you love her outfit?  I tried to pick something 'ladybug' like.

 

Since the last post Ally has had several doctor visits.  She had her 1 year check-up and everything looks great!  She is still small for her age (she was not quite 17 lbs) but she is on the weight charts at 5%.  She is now drinking milk from a sippy cup and is waaaaaay over pureed foods.  She will only eat table food now and (like her mother) prefers carbs like bread and crackers as well as fruits and meats.  Much like her brothers, she is not really eating vegetables anymore, though this has started much earlier for her than it did for them.

 I love goldfish!  I tend to overstuff my mouth and get food everywhere!

 

She also had a follow-up with neurosurgery and things are looking great there as well.  So far there are no shunt issues and things are looking good.  At some point they do want to do another MRI to get some baseline images of her brain and ventricles while they are normal and healthy with the shunt working well so that in case there ever is an issue in the future they could compare imaging.  However, they seem to want to wait until she's 2 to do this, because again she will have to be sedated.  I'm all on board for this plan- anything to keep from overexposing her to the radiation.

 

The best part though has been Ally's several physical therapy appointments since the last post.  She has been thriving over the months and every time we have another session the therapist is very pleased with her progress.  And the video below shows the most exciting part.



I cannot begin to tell you how blessed we are.  In December of 2013 I can remember watching a 21 month old Ben run around and wonder if our surprise baby would be able to do the same given her diagnosis.  The fact that Ally has developed so well physically makes my heart so happy. 

This last picture, if you'll notice, is Ally on Easter, ready for church.  And she's standing- unassisted.  She can do that for short bursts now.  She hasn't tried taking steps unassisted yet, but it will come.  We are so proud of our Ally girl and thankful for her presence in our lives and the joy she brings to all of us.  Thank you for your continued prayers and support!  Please remember that May will soon be upon us and that it is Dandy-Walker/Hydrocephalus awareness month.  We will have more info on that in the future!

January 28th, 2015- The Stand

We had a wonderful Christmas time together as a family.  One thing I wanted to share was one of the toys Ally got.  It is a toy vanity that has a comb, 'lipstick', a compact with powder brush, and bracelet.  It is by far my favorite toy that she received and she loves it!  All of my kiddos are little narcissists and Ally is no different, so she loves looking at the cute baby in the mirror and playing with everything on it.  Sometimes her big brothers help her out with it too. :-)

 

Santa Came!

 

Right before Christmas we had Ally's monthly physical therapy session.  I was again blindsided by unexpected news: the therapist thought that Ally would need some kind of orthopedics in the near future to help her with standing and walking due to her low muscle tone, and would probably need them her whole life.  Though she has physically been developing normally, she thought this may be where we begin to see some delays. 

She was debating 2 different types of orthopedics. The first just covered the foot up to the ankle and could be worn with regular shoes and be barely noticeable.  The other would come to just below her knee.  At the time she wasn't really sure what she would need and wanted to hold off on ordering them at that time, especially since they are very expensive.

Again, even though this is not the worst news (we've had worse!) it was still very unexpected.  Ally has been doing so well physically; at the time she could even get to her knees and was trying to pull up and stand but wasn't quite there yet.  I just found it shocking and so hard to believe that she may begin to show delays with this.  And to think she would need orthopedic braces her whole life?  Strangely enough I immediately thought of shoes.  It seems Ally has a liking for shoes- we often have to pull her away from the shoes stacked by the door and keep her from putting them into her mouth.  If she has a shoe fettish (not inherited from her mother!) will she be able to wear any type of shoes with braces on her feet?  Heels?  Wedges?  Strappy sandals?  (Again, most of which I do NOT wear.)

This is why the photo below was so exciting to me- and everyone else (including many of you, since I've already shared it on facebook).  Ally had been trying to pull up and stand and I caught her standing by the tub while running the bath water one night.  It may not have been the very first time, but it was the first one I managed to photograph.  It proved to me yet again that Ally was going to defy the odds.  She may still need braces, but hopefully the least noticeable ones and maybe not forever.

The next physical therapy appointment was just last week for the month of January.  Since she was doing so well, the physical therapist said she wanted to hold off getting the orthopedics to see what she could do without them.  She also really wanted to avoid getting the ones that come below the knee (especially since they are more expensive) and see if she would really need them.  The goal is to possibly start her in the ankle braces, then as she gets older and better with walking move her down to just orthopedic inserts.  This made us feel so much better!  Not to mention that one day while at work I was in the copy room waiting for the machine and a co-worker asked me how Ally was doing.  As I was telling her about the possibility of orthopedics another teacher (who is about 10 years my junior) using the copier said, "If it makes you feel any better, I wear orthopedics."

"Really?"  I said.  "What kind?"  I'd never noticed anything on her legs or feet before.

"Just inserts," she replied.  "I had scoliosis as a child so I wear them for that."  It really was nice to hear.  I would never have guessed it.

Just in the past few weeks Ally has been pulling to standing more and more.  Our next goal is to get her to start 'cruising' along the couch both directions.  Our physical therapist also noticed that she often sits in a W figure with her legs which is really bad for your joints, so we are to correct her from doing that whenever we see her sitting that way.

Ally has been doing MUCH better with both eating and sleeping.  While I was out of school over the Christmas break we 'broke' her of her nighttime habit of getting up and eating, since she really didn't need to be doing so anymore.  We are ALL getting much better sleep now!  She is also eating more times a day and eating better at each meal.  She's moved up to eating things like yogurt, cheese, cheerios, and puffs now, along with purees of fruits and veggies.  She only gets 3 bottles a day, which will soon hopefully be cut back to 2.  I did, however, stop pumping about 7 weeks earlier than intended.  I was disappointed that I couldn't go the full year, but with exclusively pumping I think my body handled it much different than with mainly nursing the boys.  Plus, many moms can only make it a few weeks or months so I knew I had done the best I could and with pumping 3 times a day and getting only 4-5 oz. per day it just didn't seem worth the time and hassle anymore.

The only other exciting bit of news we've had this month is from neurosurgery.  A month had passed since her seemingly unsuccessful head sonogram and I hadn't heard any findings from neurosurgery.  I finally called over there to try to get the scoop on what was coming- did she need an MRI or not?  I finally got the word that they were able to see enough through her soft spot and an MRI will not be necessary at this time.  I was ecstatic!  No sedation or hospital stay for us anytime soon (planned anyway)!  We go back to neurosurgery in April for a follow up.

There shouldn't be much more to update in the next month or so.  Maybe if we get a decent SNOW I can put up some photos of Ally's first snow adventure- but unless something unexpected happens things should be fairly quiet until our girl turns 1 in about 5 weeks!  We will definitely be posting pictures of the celebration!

Thanks so much for your continued support and prayers!  Ally- and our whole family- could sure use them.  Below is a picture I just took yesterday.  We had a friend make this sign (in the Dandy-Walker Alliance colors!) from this quote that I found and love.  I think it perfectly sums up our tiny DW/hydro warrior and I can't wait to hang it in her room!  (Notice the gray ribbon at the end- gray is the color for basically any brain disorder.)

 

This is my fierce face!