September 25th, 2017: The Summer Gone By

Another summer has come and gone!  (How is it that they go so fast???)  The kids and I had another great summer together, full of fun times and family memories.

The first (and probably craziest) thing that Ally and I did this summer, was that in the beginning of June Ally had a follow-up MRI.  We knew she'd be getting one from her neurosurgery appointment back in January.  Once we finally got it scheduled and all the details worked out, the day finally came.  Luke was still in school, and Ben stayed overnight with Russell's parents.  Ally and I went to the hospital in the morning and checked in, then went to the imaging floor and waited for them to call us back.  (One interesting thing- during our wait, there was a man who was deaf in the waiting room with a woman and an interpreter, probably provided by the hospital.  Ally kept trying to talk with them and when I explained that they couldn't hear and talked with their hands, she was pretty fascinated.)

When we got to the room, they asked all the standard questions of both her and me, since I would be with her, mostly about having metal pieces in our body anywhere.  We got Ally into a hospital gown, and took her into the room with the machine.  She was not going to be sedated for this one, which I was glad about, but I also didn't know how she'd do with the machine either.  The got her laid down, padded her head real good and put headphones on her, which pumped Disney tunes the whole time (but doesn't come close to drowning out the noise of the machine).  They put a pillow onto her legs, and I laid tummy-down on the pillow and held her hands- which meant yes, I was inside the machine too!  I had no idea I'd be getting an MRI that day too!  They then put a device over Ally's head that had mirrors on it- so without either of us moving, she could see me and I could see her.  It was neat- I'd never seen anything like that before.  So I got to talk to her the whole time.  I think she was a bit scared at first, and tried to sit up as they were 'packing her in', and again when the noises started.  But I think once she realized it didn't hurt, she was okay.  I kept talking to her, and when the noises would start I would say, "OK, they're taking pictures now, so we've got to be real still."  The whole thing took about 20 - 30 minutes, and she did SO great!  When she was done, she got to pick out a prize from a bunch of toys they had, and she found a Minnie Mouse puzzle and latched onto that- she still loves Minnie!  I wish I could have a picture taken of us on/in the tube, but of course having a phone in with the machine is a no-no, so I just have this cute picture of her after it was over.

We went to neurosurgery for her check-up in July.  We saw the same resident we saw in January, who said the images from the MRI showed her ventricles holding steady and she's doing great!  They would not be ordering another MRI again in the near future, and we didn't have to come back for a year this time (unless she started having problems).  One thing the resident did tell us was that if we did end up in the ER due to possible shunt problems, we are to direct the staff away from CT scans and x-ray shunt series, since it exposes her to radiation, unlike the MRI (it was non-contrast).  Since her hydrocephalus is a life-long condition, the less radiation she is exposed to over time, the better.

Speaking of appointments, Ally also had her first dentist appointment this summer!  I usually don't start them at the dentist until they are about 5, but we just got dental insurance back and its a family plan, so what the heck?  We're paying for it!  However, this turned out to be an adventure I wasn't expecting.  When they did the consultation and found out Ally had shunted hydrocephalus, the hygienist said she needed to check with the dentist about whether they could do her cleaning.  She came back a few minutes later saying she needed clearance from her doctor to have her appointment.  I was dumbfounded- I had no idea this would be an issue.  I asked what doctor it had to come from, and they said the one who took care of her hydrocephalus- which meant neurosurgery.  Great...

So while Ben had his appointment (his first, I might add), I tried to get in touch with neurosurgery to get clearance for Ally's dental cleaning.  I finally got through to someone who said they would fax it over.  However, Ben finished up and it still hadn't come through.  They received it as we were leaving, but her spot was already gone.  I was so frustrated, but they said if we came back at 3 they could see her, and so we did.  So she had her first cleaning (no x-rays, she's too young) and they said she was great and she did really well.  As they started with her they said they hoped she didn't have any cavities, because if she did they wouldn't be able to treat her without more consultation with her doctors, but everything was good.  I asked about it later on the Dandy-Walker parent page, and a few parents said that their kids have to take antibiotics before going to the dentist- with the risk of cutting places in their mouth, it can lead to infections, which could make their way to the shunt.  Hopefully next summer I'll be able to get her neurosurgery appointment before her doctor's appointment to figure all of that out!

June was a busy month for all of us.  We spent about 6 days at my parents' house, visiting with my family and especially Granny who had come up from Florida, as she does every year at this time.  All 3 kids also went to VBS at the church where they attend AWANA.  I was surprised that they allowed kids Ally's age, but they did and she had a great time.  We bought the CD of the songs they sung that week and have just about worn it out in my car.  All 3 also begged for a t-shirt, so Papa and Grandma supplied the money for all of that.  Every morning when I would drop them off, I would return home and work on Ally's room.  It had been the same since we moved in and Luke was a baby- tan walls, with red, blue, green, and yellow bedding with peek-a-boo animals on it.  It was time for something different (and girly).  So Ally now has a pink and purple room (when I ordered purple paint, they mixed a gallon instead of a quart.  Lucky mistake- they sold it to me at quart price!  So she has a purple 'accent wall'.)  I painted not only her walls, but her name letters, bookshelves, and mirror trim.  We moved a dresser out and some other things around and it now looks like a little girl's room, complete with princess pop-up playhouse for tea parties!  I must REALLY love Ally, because I REALLY hate to paint.

At the end of June we took our first family vacation with just us- ever!  We stayed at the Thomas bed-and-breakfast (also known as Mom and Dad's house) and four days drove up to Springfield where we took the Metro into DC.  We went to a Nationals/Cubs game (Go Cubbies) on Monday night.  Tuesday we went to the National Zoo.  Wednesday we went to the mall to see the monuments (Luke really wanted to see the Washington Monument and the Lincoln Memorial) and went to the Spy Museum.  Thursday we went to the Natural History Museum (fav!) and a little bit of the Air & Space museum.  The kids loved riding the Metro everyday, and really enjoyed our outings.  They got a bit tiring (we walked A LOT), but thankfully we had great weather and it wasn't super hot.  Ally still takes naps, so we would put her in the stroller and lean the seat all the way back and she'd nap as we walked around and between museums.  (It was also great for carrying our stuff, because we packed our own lunch everyday along with phones and water.)  It was a lot of fun and I think the kids enjoyed it- they all said the zoo was their favorite.  Luke especially thought it was so cool to see these places that before he'd only seen on TV or in pictures.  

 With the lions (top left, lying down- get it?)

July brought with it swim lessons.  We'd been swimming all summer as we usually did, and Ally has gotten extremely brave- she will now jump into water up to her chin without holding anyone's hand!  She LOVES the water so much, and she did great in her swim lessons.  The instructor was so impressed after the first lesson with her she felt she could have moved up to the next level, which is completely without a parent, but felt she was so small she'd get lost in the shuffle so we ended up keeping her where she was.  It's hard to believe this was my last summer having to be in the pool with one of them for swim lessons!  They are growing up so fast!

In August our pool membership ran out (I go back to school in August) so we went to the water park a few times.  The kids had a blast, and there was one water slide (the purple slide) that even Ally was tall enough to ride.  The rule is you can't sit on a parent's lap- it's one at a time ONLY.  Of course, that didn't stop Ally.  Just put a life vest on her and wait for her at the bottom and she's good!  She went down over and over again.  She even got to the point where she'd try to be sneaky and cut in front of other kids close to the top!  The lifeguards would put a stop to that- smiling at her cuteness as they did so.

Ally went back to school the same day I did.  She is now in the 3s room- the Green Room.  I wasn't sure she was going to make it with her potty training, but she has done great and is now completely potty trained- she just wears a diaper at night because she hasn't quite mastered that yet and still sometimes has accidents at naptime- especially if she's REALLY tired.  She was my hardest one to potty train, but she made it!  (We didn't even do swim diapers.  I was nervous about this, but she did good.  It helped one day to show her the EMPTY water park that had closed down due to a biohazard and say to her- "See that?  They had to close the pool- because someone POOPED in the pool.  So if you have to go potty, we need to get out and go on the potty, or else they have to CLOSE the pool and we can't swim anymore."  Problem solved!)

First day of Green Room

Anyway, Ally loves school and is doing really well.  She has done very well being there without big brother Ben, who started Kindergarten this fall.  Of course she has lots of friends and (for the most part) does what she should.  The funniest thing is she has a new friend there who started in the Red Room (2s).  Ally LOVES her because she looks SO MUCH like a baby.  This girl has all the baby pudge and almost no hair, making her extremely baby-like.  Ally LOVES babies- she points them all out to me wherever we are, and wants to go talk to them, touch them, etc. (much to my- and sometimes the other Mom's- chagrin.)  She's such a little mommy!

We also started AWANA at the end of August, and Ally is now a Cubbie!  She has been so excited to go to Cubbies since Puggles ended in May.  She loves working on her Cubbie book and listening to the CD in the car.  Apparently one night I found out that during 'story time' in Cubbies Ally was called on to answer a question and basically gave the whole Gospel story- the leader kept shushing the other kids and trying to let Ally finish talking!  She is one smart and blessed little girl, and we pray that all that she is learning will take root in her heart and lead her to a strong faith in Jesus.

We are now back to 'normal'.  Everyone's in school and back to work (Ally and I have now had 7 weeks of school as of today!) and we are getting into the swing of things.  We are excited for our fall events, including our annual trip to the pumpkin patch, and Halloween (we already have costumes, and I won't give Ally's away but it is the CUTEST thing ever!).  Thanks, as always, for your interest in our girl!

Every year we do family photos.  Enjoy some photos of Ally and family courtesy of Beth Preston at Rebel Photography.  Aren't they great?

May 24th, 2017- The Last Day Update

Thought it was time for another update on our Ally girl- especially since new families from the Dandy-Walker parent facebook page keep popping up and I keep directing them here for hope and encouragement!

Fortunately, there is not a lot of medical 'stuff' to update.  Ally went for her 3 year check-up in March, and everything there looked great!  She is not having any shunt issues or development issues.  She is still wearing her orthotic inserts regularly and has adjusted to them and can wear them all day now.  (She keeps putting her shoes on the wrong feet, which is making me crazy because of her inserts- I don't want her to mess up her feet by wearing them on the wrong feet!)  We are still waiting to find out if she is going to have an MRI this summer, just for baseline data as she grows (and her ventricles grow too), but other than that we expect no other appointments or procedures!  She is a healthy, growing girl.

We've had some good things happen these last few months.  Ally got her first haircut in February (just a trim, the ends were getting scraggly).  She did really well and was so excited to be getting a haircut like the boys!  She got another one a few weeks ago and we cut off several inches so now it is at her shoulders.  I wanted it to be a little shorter for the summer.  Getting her to sit still for a longer time was challenging, but she did it!  We also dyed eggs, like we usually do at Easter.  However, this year I got the kind of dye that you use paint rollers to paint with, instead of dipping them in the dye cups.  The boys just painted each of their eggs all one color, but my Ally painted hers every color.  They turned out to be my favorites!  In May Ally completed AWANA Puggles!  She had a great year in Puggles but is SUPER excited to move up to Cubbies next year (like her big brother!)  They had an awards ceremony where she received her certificate of completion and a Puggle zipper pull.  They also sang some songs for us (always cute!).

 First haircut ever!

 I asked her to smile, but she doesn't really do that anymore when I ask for pictures...

 Puggles awards: singing songs and smiling with awards

Of course, the big news is our big girl turned THREE March 2nd.  Ally had a great day at school and brought M&M cookies (at her request) to share with her friends.  Then that evening we went to Chick-fil-a for dinner and she got her first gifts from Papa & Grandma: several books, including a Ladybug Girl book that she requests often at bedtime.

We had her birthday party the next weekend.  One really cool coincidence that facebook reminded me of was that the day of her party was the same day we brought Ally home from the hospital!  It was neat to think that we were celebrating her homecoming too.  I had decided to do an art themed party where all of the guests could do different kinds of art.  We had a painting station, coloring, playdoh, bubble art, and beading necklaces.  I also hired a youth from our church to do face painting.  We had ice cream and plain cupcakes, that the guests could decorate with various toppings (sprinkles, gummy bears, crushed oreos, marshmallows, chocolate chips, etc.).  We had a LOT of people there and had a great time!  Our Ally girl is so very loved by our family and friends, and it showed!  We are so thankful to everyone for coming and celebrating with us, and especially for all of her (many, many) gifts!

 She chose a bumblebee for her face painting

 Ally (and most of the other kids) enjoyed painting the most

One of my favorite pictures of her ever.  Happy 3rd birthday baby girl!

Ally is also working very hard on potty training.  She is doing really well, and wearing underwear everyday.  She still has accidents sometimes, which is making me crazy- she'll have several really good days and then have an accident or two a for a few days.  Whoever said boys were harder to potty train has never met my Ally girl!  She has been going in the potty off and on since Halloween and I still wouldn't say she is fully trained yet.  However, when that day comes (and I think we're getting close!) we will be taking a family trip to Chuck-E-Cheese, as is tradition in our household once diapers are officially gone.

This week is my last week of school, (today is my last student day) which means its also Ben and Ally's last week too.  This is Ally's last week in the Red Room- when we return to school in the fall she will move up to the 3s class, the Green Room (as long as she is fully potty trained- she really wants to go to the Green Room so that is helping to motivate her too!).  We are looking forward to a full and fun summer.  We have 2 VBS weeks to attend as well as the usual swim lessons and trip to my parents to visit with Granny visiting from Florida.  We are also doing a mini-vacation to do some things in DC as a family, and Ally will be doing a dance camp one week!  We are hoping to put her in dance starting in the fall so we are going to see how she likes it with this day camp experience.  We'll update again at the end of the summer with pictures and stories of our summer adventures.  Until then, thank you for your continued interest in our girl!

Do you recognize the doll?  It's made from the cute sleeper we brought her home from the hospital in!  Look how big she is now!

January 10th, 2017- The New Year Update

Happy New Year!  There's nothing like a few snow days to get caught up on blogging, especially since we've had so much happening since the last post.

First was our annual trip to the pumpkin patch.  This was our 7th year going to the same farm and we always have a great time.  After playing in the corn crib and on the mini-tractors, we took a hayride up to the corn and pumpkin cannons and the entrance to the corn maze.  After taking a few minutes to shoot the cannons we traipsed through the maze (it's not a big or complicated one, perfect for young kids) and then came out to the pumpkin patch and other activities.  There is a tractor-pulled barrel train, slides, and a swing.  The kids had a blast running between all of the various activities (and with it being as cold and windy as it was that day, we didn't have too many other kids around to contend with!).  After choosing our pumpkins, we rode the hayride back to the main area.  It is always a lot of fun and we look forward to it every year.

Next was Halloween.  We always take our kids to a consignment store first to see if there are any costumes in their size that they like.  This year they all found one!  Unfortunately the strawberry that Ally wanted was a size smaller than what she was wearing.  She insisted, and I bought it, hoping that she would still be able to fit in it on Halloween, which was still weeks away.  

Halloween came and luckily the costume fit!  Ben & Ally had their Halloween party at school the Friday before.  They had a great time trunk-or-treating and hanging out with Mommy, Daddy, & Auntie afterwards eating snacks and treats and taking a hayride.  (One of Ally's teachers told me that my kids had the best costumes of all the kids in the school- off the record, of course!)

On Halloween we had a quick dinner of spaghetti and then headed over to Papa & Grandma's house, who live in a much better neighborhood for trick-or-treating than we do.  We went through the whole neighborhood, and the kids had a blast and collected a LOT of candy (so much so that after awhile I had to carry Ally's bag because she could barely walk with it, so she would collect her candy at the door then bring it to me to put in her bag).  We had to tell Luke a number of times to slow down and wait for his younger siblings before ringing the bell, and we of course also had to remind them to take turns ringing the bell when arguments broke out.  But in general they had a great time, were told a number of times how cute they were, and afterwards ate as much candy as they could hold.

Ally refused to wear her hood with the green part of the strawberry on top.  She was protected by a dinosaur and ninja!

Early in November Ally finally got to see her former physical therapist about her muscle tone and her orthotics.  The therapist said that although her tone had improved, she would still need inserts and would probably need them her whole life.  (We were also very fortunate because Ally does point her toes inward as she walks a bit, and it will sometimes cause her to fall if walking fast or running.  The therapist noticed this and showed a modification we can make to help.  It is basically two straps wrapped around her waist, down and around her legs, and attached to her shoes to pull her toes outward.  She HATED it.  And can you imagine changing diapers or potty training in something like that?)  So we headed back to the orthotics place for her to be measured.  When they came in we then had to buy some bigger shoes to accommodate the inserts- so now she is in a size 9!  These inserts, we were told, are much harder/firmer than her other ones, so we had to break them in and have her wear them for only a few hours at a time at first, but she's doing well with them now.  So unfortunately we were not able to drop orthotics altogether, but moving down to inserts is a huge deal and we are very thankful!

 Thanksgiving was a great time with my family, and then of course we started shopping on black Friday for deals for Christmas!  Our Christmas festivities were delayed at home for a week or two because we were put out of our house while our bathroom was being remodeled.  We stayed with Russell's parents during that time because it is our only bathroom and was taken down to the studs and put back together again.  But after it was completed we were able to decorate and put up the tree.

This picture was taken during the Christmas parade.  We got to march with the Busy Beats, her music group that she did for about a year (that's why she's holding the musical instruments).  It was fun (and good exercise!).

Of course, at the kids' school there was no delaying Christmas preparations.  On the Friday before Christmas break began, the preschool had their Christmas party, complete with performances and lovely handmade artwork.  Last year I was unable to make it so I was so glad that this year I got to be there to watch both Ben & Ally perform and then enjoy some treats together.  

Singing Jingle Bells!

Christmas was wonderful, of course.  She had a great time going to the mall to visit Santa and take a train ride with her brothers.  Santa brought Ally a whole art set full of crayons, markers, & colored pencils, along with a few coloring books.  She also got a singing Ariel mermaid doll that she can take in the tub with her.  Being a Minnie Mouse fan, she got a number of Minnie items from family members, including clothes, a nightlight, doll, v-tech purse with number and letter learning, and a doll house with figurines.  She is definitely one loved (& spoiled!) little girl, and was obviously very good this year.

Our Christmas card this year!  So perfect.

Riding the train.  Apparently she screeched through a lot of the ride!

Christmas Eve

The day after new year's Ally gave us a scare.  We were all off from school/work that day except for Luke.  Russell and I had taken the younger two to McDonald's for lunch, and the whole time she was acting funny- complaining about her head hurting and not wanting to eat, laying on us, etc.  She did get up to play in the play place a bit, but not with her usual gusto.  Between the two of us Russell is the paranoid one, but even I starting getting scared that something was wrong with her shunt.

Fortunately the next morning she seemed to be acting fine, and she had a follow-up with neurosurgery.  I told the resident we were seeing (same one we saw last time) about how she was acting and she said it sounded like nothing to be concerned about since she was back to normal, but always to keep a close eye on her and contact them or bring her in if she had an episode that did not go away.  She will probably also have another MRI this summer.  This one, however, is different, because it is much faster (so she won't need to be put to sleep- yay!) and doesn't expose her to radiation (this type of MRI has a special name but I forget what it was called).  The resident said that they wanted to do one just to have ventricle size- as Ally grows her head will grow too and they want to have accurate ventricle sizes if she does have an issue to compare them to.  So we have that to look forward to in 6 months or so.

Other than an ear infection over new year's weekend, Ally's health has been great.  She's had no issues and has done really well at school and home.  We are so proud of her, and continually amazed by God's grace to her and our family when so many other Dandy-Walker warriors are affected so much more so than she is.  

We look forward in the upcoming weeks to celebrating Ally's 3rd birthday!  We are also really hoping that with that will come the shedding of diapers from our family- Ally's first time using the potty was on Halloween and she has used it a number of times since then.  She has picked out her own underwear (and received some for Christmas as well) and tried to wear them once, but we went through three pairs in one day!  (Though she was so proud an came out telling her brothers, "I'm wearing big girl underwear!")  She is very sporadic about when she will use the potty, but she obviously understands what to do so hopefully it is only a matter of time until she decides to use it all the time!  She keeps talking about moving up into the green room (the 3s room) at school but she can't move up until she is out of diapers, so we'll see what happens in the coming months.

Thanks, as always, for your support & interest in our Ally girl.  We hope that she, and you, have a wonderful 2017!