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!

December 17th, 2014- The Reflection

I have been meaning to do this post for over a week now!  This is such a busy time of year for everyone, especially us!

So, going back to the fall- we had a great time going to the pumpkin patch as a family.  With 3 kids now, we didn't get as many pictures as we would have liked, because we were so busy keeping up with everyone and one of us had to hold Ally the whole time (a stroller doesn't exactly lend itself well to a corn maze or a field!).  But we did get a few pictures to share.

 

In the corn crib...what is this stuff??

 

 

First hayride- not the best pics of Ally, especially since she fell asleep on the way back!

 

 

Halloween was a blast!  We had a great time trick-or-treating in Russell's parents neighborhood (though the cold and slight drizzle made it a bit miserable for Ally, and even the boys only did one whole street).  Afterward we went to the home of some friends and hung out and let all the kids play together late into the night. (Of course, late for us means around 9!)  Some spooky pics...

 

Her costume- a ladybug!

 

Halloween dress!

 

Moving into Thanksgiving was a somewhat bittersweet time.  We had a great Thanksgiving with my family and it was a much needed rest for us from our crazy routine.  It was also, however, the year anniversary of many hard times- my accident and discovering I was already 20 weeks pregnant with Ally.  I actually went back through the posts from those events and the emotion is still as real as ever.  FYI, everything from the accident has been settled and done with, though of course the events from that night can never be undone.  And, Ally of course is a thriving little girl who blesses our lives immensely!

 

Smiley girl!

 

Ally has had several appointments since our last post.  She went back to neurosurgery in October.  Everything looks good but they wanted to try and get some 'after' imaging of her brain since the surgery to determine the size of her ventricles.  He ordered a sonogram but told us that might not be able to get the imaging necessary and if so she may need another MRI.  We had the sonogram done Tuesday and I haven't gotten the results back yet, but my guess is an MRI is coming.  Since Ally is now 9 months old, more of her skull plates are fused together and sonograms can't see through bone.  They could only see through her soft spot, but nothing through the back and sides.  Hopefully they could see what they wanted through the top and we won't have to do an MRI, because that would mean sedation and probably an overnight hospital stay.

Ally's physical therapy has been going well.  At the first visit we learned some exercises to help her with sitting up, and by the next appointment she was pretty much sitting up on her own!  (with the occasional topple...).  We really didn't do the exercises with her that much so it was probably mostly her natural development.  So next we worked on crawling exercises, because she was so close!  She would get to all fours and rock back and forth but not actually move forward.  By the next appointment, Ally was crawling! (Again, without much work from us.)  She crawls everywhere now, and gets into everything!  The physical therapist says she is doing really great and at this point they are basically just monitoring her.  Next we need to work on getting her to stand (though she does get to her knees on her own).  She is really doing great with her physical development.

 

Crawling!  (And being silly...)

 

A couple of weeks ago Ally went for her 9 month check-up.  Our pediatrician is very pleased with her progress.  She is up to 15 lbs., which puts her at 5% on the growth charts!  She is still taking bottles of pumped breastmilk mostly, but with solely pumping I haven't quite been able to keep up with the demand and we have almost depleted the freezer stock, so she has been getting a few ounces of straight formula each day.  I hate that (not to mention how expensive it is!!!) but it is only a few ounces and she's still getting mostly breastmilk.  She has done better with solid foods than she was, so hopefully soon she will be taking more regular food and need less of the liquid nourishment.  (It would also help if she would sleep though the night and not need to eat!  We know she's capable of sleeping through the night because she's done it a few times, so hopefully over the Christmas break we can work on that.)  She is still really interested in watching us eat so I'm hoping that soon she can start eating some more things like puffs, cheerios, and small bits of food and maybe she will be more interested (maybe this mushy stuff is just not her thing!).

Christmas time brings so much excitement, but all too often it also brings sadness as well.  We are very much looking forward to the fun and family memories the season brings, but lately there have also been many things that have brought me to tears.  On our Dandy Walker parents page on facebook recently a young woman posted that she was going into early labor.  A day or so later she posted pics of her baby girl in the NICU and said she was doing pretty well.  A few days later, another post asking for prayers because her daughter had taken a turn for the worst and they were transporting her to another hospital.  Finally, a picture with a post stating that her baby girl had 'gained her angel wings' as we say.  She only lived a week.  I was so touched emotionally by this family that I didn't even know that I sent this message to the mother:

You don't know me and I don't really know you, but I just wanted to let you know that my heart is totally broken for you and your family. I just wept last night when I saw your post on the Dandy-Walker parent page. I am incredibly sorry for your loss. It hits so close to home for me because you were in the same situation I was in 9 1/2 months ago, when my water broke at 34 weeks and our girl was born 2 days later having already been diagnosed with DWV and hydro and not knowing what the future held, especially now that she was premature. We spent 9 days in the NICU before discharge. We were incredibly blessed that her condition wasn't more serious and I know how easily our places could have been exchanged and we could have been the one to lose our daughter. It's so not fair that you only got to have your beautiful girl for a week and I'm so sorry that your time with her was so short. I know there are no 'right words' to say in this situation and I'm not trying to say them but please know there is a Dandy Mom in Virginia who is crying with you and praying for you.

Peace & comfort,
Kim

I remember that family often during my day and try to savor and embrace each moment with my children, for there will never be another day like today.

Our family wishes you a merry Christmas season filled with peace, love, &

 

 

October 4th, 2014- The 6 Month Surprise

We've had a lot going on since our last post!  Sorry for the delay in updates, but time is a precious commodity now that school and jobs are in full swing!

On September 2nd our Ally turned 6 months old!  On that same day she had her 6 month well check up.  I left work early to pick her up from Russell's parents (they have been keeping her during the day while we are at work) and take her to the appointment.

She has definitely grown!  Her weight is up to 12 lbs. 10 oz.  I was a little disappointed that she wasn't at 13 lbs because that would mean she would officially have tripled in weight.  However, I was delighted to find that this weight puts her back on the charts- at 2%, but still she is on there!  I think our pediatrician might be slightly concerned about her weight because she had us increase the amount of formula we add to her pumped breastmilk bottles from 1/2 tsp to 1 tsp for every 2 oz.  

After her examination, our pediatrician told me that she felt that Ally was showing signs of some slight low muscle tone.  She recommended that we get in contact with Early Intervention and try to get some physical therapy for her.  I was in such shock about this revelation I didn't think to ask any questions about what made her arrive at this conclusion.  She had seemed to be doing so well in my eyes I never expected this; but then again, I am not a doctor.  We had noticed that she was not bearing any weight on her legs when we would try to 'stand' her up, but Ben had done the same thing before he really started walking too so we weren't too concerned about it.  That afternoon I called Early Intervention and set up an appointment with our case manager.

One exciting thing that happened was the pediatrician cleared Ally for was to start solid foods!  I made some rice cereal and she started it a few days later.  It took some getting used to, but she did pretty good with it for her first time.  Since then, she has had sweet potato, squash, and peas.  I make all her baby food (I did it for the boys too) but I've had a hard time getting new foods ready when she can start new ones.  The plan is to try pumpkin and carrots next, then move on to green beans and then fruits!

A few weeks later we had our appointment with Early Intervention.  We agreed at the meeting to add the service of physical therapy for Ally.  Her first session was Monday the 29th.  The physical therapist also came to our home for the session.  Right now, our goals are working on getting Ally to sit up on her own.  The therapist showed me a bunch of different exercises we could do with her to help strengthen her core muscles and get her balancing on her own.  After working with her just in the session she was doing better with sitting!  We asked the therapist what she thought about the low muscle tone diagnosis.  She said that there are three categories of people: those with high muscle tone, which actually has specific categories of severity; very low muscle tone (where if you were to hold the person you would almost be afraid you would drop them because they are so limp); and then 'normal', which has a broad spectrum.  She did a quick evaluation of Ally and said she was on the low end of normal; if normal had a scale of 1 to 10, she would be at about a 3.  So for now we will be working with her at home and she will have a session of physical therapy once a month.  She is already doing much better with sitting since this session.  She can actually sit on her own at times for 30 seconds or so at a time.  I'm not sure if it is due to the exercises or just to her natural development, but either way it is encouraging!  

Ally also loves kicking and grabbing at toys that are dangled on a mobile or her floor gym, and she can roll across the room in no time!  She is really trying to get to her hands and knees to a crawling position!  She enjoys being on her tummy on the floor to play.  And she LOVES to watch everything going on around her- especially her big brothers.  There was one afternoon recently where she was sitting in her seat on the floor and both boys were on their knees in front of her, singing and dancing for her- her own private court jesters!

On my tummy!

With the changing seasons, that means a season of firsts for our Ally girl.  We are looking forward to all the fun things that accompany the fall- 1st pumpkin patch trip, 1st Halloween, Thanksgiving, and soon, Christmas!  We look forward to keeping you informed on all of the fun to come- and we hope that if you are a newly diagnosed Dandy-Walker family who has been googling late at night and stumbled upon us, we look forward to showing you how Dandy-Walker children are such a blessing and can have an amazing quality of life- contrary to many doctor's diagnoses.  

July 24th, 2014- The Crazy Days of Summer

The month of July has been a crazy, busy one for us!  I am so used to the 'lazy days of summer' that this summer has been very unusual for me.  I am already planning for next summer to be doing next to nothing- as normal!

July 3rd Ally had an appointment with neurosurgery to get her stitches removed.  The stitches on her belly incision must have been dissolvable because I hadn't seen anything there, but when I referred to her head to others I often called her Frankenstein since her stitches made it look a bit scary.  The neurosurgeon PA that we had seen the 2nd day in the hospital saw Ally and removed the stitches.  She said everything looked really good.  She said while she was removing them that she actually saw the shunt work- the valve open and fluid drain down, so she wouldn't have to press on it and try to get it to work manually to make sure it was functioning properly.  I learned two important things at this appointment: first, they had put in enough tubing that as long as the shunt was working it would be able to grow with her all the way to adulthood!  So she has quite a bit of tubing curled up in her chest cavity!  And second, shunts usually get infected as a result of outside bacteria- usually introduced with the surgery.  So the farther we get from the surgery, the less likely the shunt is to get infected, because there are very few ways bacteria can be introduced to the shunt while it is inside her head.

Before we left neurosurgery I got a second copy of her MRI imaging from May.  They gave us one copy in the hospital after her surgery, but I wanted a copy to take to our pediatrician.  We take our copy when we travel- in case she has a shunt issue while we are out of town, we can show the hospital the 'before' pictures of her brain.  That way if there's a problem they could compare any imaging they might take to the imaging done before she had the shunt placed.  If the images look similar, it would indicate a shunt problem that would need to be taken care of.  I never thought that as I packed to go away I would have a checklist that went something like: Clothes?  Check.  Toiletries?  Check.  Brain Imaging?  Check.

When we left the neurosurgeon's office we headed to the pediatrician for her 4 month check-up.  This appointment also went well.  She was 10 lbs. 9 oz. which I was a little disappointed in- I was hoping for 11 lbs.  She is now 0% for weight and 1% for height, but since she is a preemie this is not unusual and our pediatrician did not seem concerned.  She had some eczema that we have some creme to help clear up, and otherwise she needs to continue with what she's doing.  She had 2 shots and did great with them- after brain surgery, what's a couple of shots, right?

Easter Seals came by for their monthly check on the 9th.  So far she is still developing on target and does not need any interventions or therapies, but as usual they will continue to see her every month to keep an eye on her development and bring in an intervention if needed.

On the 17th she went back to neurosurgery for her one month post-op appointment.  Again, things looked great and she goes back again in 3 months.  Originally they had told me it would be a year, but because she is an infant and her skull would be changing quite a bit they would like to see her a bit more often.  It makes me feel better to know she would be watched a little more closely at first.  Ally has done great with her shunt overall and it doesn't seem to bother her and now we barely notice it.  It's amazing how what was such a big deal there for a while has become fairly mundane to us now.  Let's hope it stays that way!

Can you see the shunt?  The top-most bump (toward the top of her head) is the valve, and the next bump is the chamber where the fluid builds until it is released into the tubing.  Her scar is practically non-existent- once she has hair you won't be able to see anything at all!

We also did some fun things this summer.  We went to the Washington Nationals game in June with our families for Dandy-Walker Alliance day at the park.  We left Ally at my parents' home with my Dad and Ben since we didn't want her out in the heat.  We got to see some of the friends we met at Carter's Run back in May and have a good family day together.  In July we visited my parents again to attend the local agricultural fair.  We enjoy seeing the animals and riding the rides together, so it has become a family tradition.  Ally did great at her first fair, especially because at first it was so hot!  But she tolerated it well and barely complained.

Luke at his first Nationals game!

The group of us- Russell's parents, Russell, Luke & I, and my brother & sister-in-law and my two nephews.  Mom is behind the camera :-)

I won I won!

Gramps' girl.  They hung out most of the evening while everyone else rode rides.

Well, I did get to ride on the barrel cars with Mommy, Bubba (Luke), Bubby (Ben), my cousins and Auntie!

Another fun milestone for Ally is that she started sleeping in her crib in her room!  She was going to outgrow her bassinet in the very near future and we felt she would be ready for her crib.  She has done really well and especially loves her crib mobile!  We have also gotten her onto a nightly bedtime routine of bath, bottle in the rocking chair, and then bed at a reasonable hour!  We were very excited to not only get our room back, but also some time to ourselves at night after ALL the kids are in bed!  We also initiated her into the family with what we call 'flying naked baby time.'  Since she now takes a bath around the same time the boys do, we get her undressed on the changing table, then 'fly' her naked into the tub, chanting 'flying naked baby time' over and over.  We started it with Luke when he was a baby and just being silly with him, then continued the tradition with Ben, Luke chiming in with us as we chanted.  Now the three of us chant and Ben dances too.  It's a fun time and always puts a smile on my face to think about it.  When I announce that it is 'flying naked baby time', ALL the boys in the house come running!

The biggest news, however, has come here in the last week.  On July 24th Ally finally rolled over!  She had gotten really close a number of times but had never quite gotten all the way over. (The picture of her in the yellow dress above shows one of her many attempts and how close she'd get before she finally made it.)  But this Thursday I was home with just Ben and Ally and she finally did it.  I cheered and cried all at the same time.  The fact that she is not only developing on a normal timeline so far in spite of her Dandy-Walker, but with being almost 6 weeks premature she is technically ahead of the curve- it is just too amazing for words.  I immediately texted Russell and my parents to let them know the good news.  She then proceeded to roll over a few more times that afternoon and then over the next few days chose not to show any other family members her new trick!  However, the last few days she has started rolling over a lot, even in her crib at night.  This is a huge milestone and we are so proud of Ally and thankful to God for her continued progress and safe-keeping.

Thank you so much for praying for Ally and our whole family.  We just got word that God has provided a new job for Russell- he starts mid-August.  We are so incredibly thankful for this opportunity- it means a lot of questions answered, stress relieved, and stability for our family in so many ways, and I am SO grateful and thankful, as well as proud of him and how hard he worked to find a new job.  While I start back to school August 4th, I am looking forward to a new start for our whole family- a new school year for Luke and I, a new job for Russell, a new preschool for Ben, and new opportunities for our Ally-girl to grow, develop, and shine brightly.