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. 

June 18th, 2014- The Shunt

The alarm went off at 2 AM, but I didn't hear it.  Russell had to wake me up.  We had stayed up too late the night before (again), me mostly because Ally fell asleep in my arms and I didn't really want to go put her down.  Then I had things to get ready for my summer class, I needed to pack for the hospital...so I was up too late and incredibly tired.

I had tried to keep Ally up a lot the day before so she would sleep well during the night.  She was still sound asleep at 2 AM.  I got her bottle and got it into her mouth, and she drank the whole 2 oz. in 7 minutes, never opening her eyes.

The alarm went off again at 5:30; I heard it this time.  Russell had already gotten up and showered.  I got up and got ready to go, with no time to spare.  Last to be ready was Ally- we let her sleep as long as possible, then put her in the car seat right before it was time to leave.  She fussed a bit as I strapped her in, but she went back to sleep in the car.

Russell dropped us off at the entrance to surgery at the hospital.  I went in and got her registered, and then was directed to the waiting room.  Russell joined us in registration, and we waited together.  Ally was still asleep.

After about 20 minutes, they called us and a little boy back to pre-op.  Ally's pre-op area was obvious- it was the one with the crib. There was a peach baby hospital gown and sea foam green footie socks for her.  The nurse went through the standard questions with us, then told us to just leave her for now in the car seat since she was so peaceful.

Ally woke on her own a bit later, and we took her out of the seat.  She actually did really well for going as long as she did without eating and didn't fuss too much during the wait.  The nurse measured her head and did her height and weight (10 lbs, 6 oz!).  The anesthesiologist came in and talked to us about her anesthesia for the procedure.  A lady from child life services came in- she usually talks to children about their surgery, but of course Ally was too young to understand anything.  She did give us a quilt made by a lady in a local retirement home for children in the hospital!  What a great ministry idea!  Our nurse was really nice, we chatted about our older kids for quite awhile during the downtime.  She has 2 girls the same ages as Luke and Ben.

After we'd gotten her changed into her gown, first the resident neurosurgeon came in to speak with us and mark her head, and then the neurosurgeon himself.  I asked him, "So are you going to find out how smart my girl is today?"  He kind of chuckled and said, "We won't be going that deep.  It should be a relatively simple procedure, and shunts work really well for those that need them."

 Still asleep in the car seat

 Getting ready

Paci keeps me occupied

After the neurosurgeons left to prep, another nurse who had been behind them introduced herself and said she would be in the operating room with Ally.  She would be the one taking her back into surgery.  It was so hard to hand Ally over to her.  I got teary, but I never cried.  At that point, it seemed a little silly.  Of course none of this was pleasant, but it was necessary and that's all there was to it.  Plus, I had read the blog of friends with a special needs daughter from a few weeks before.  She had been at the same hospital having a procedure done, and had blogged these words: "Even though you'd think I'd be used to procedures and tests by now, it's still hard to let two nurses wheel your baby away in a bed into a room and have to go out in a waiting room away from her. I'm thankful, though, that her Heavenly Father is always with her, not hindered by policies and doors and confined to waiting areas. She is in His hands, even when she's not in mine. "  My friend Cristen is so wise and a great example of Christ to me!  You can read about their journey at www.waverlysjourney.blogspot.com

We went back to the waiting room to wait.  Russell played on his phone, and I worked on the week's assignment for my summer class.  The waiting area was crowded, so we actually sat in the deserted kids area.  After a little while another woman and a couple of kids joined us.  She got to talking to us after awhile- she was a retired elementary teacher so she shared some of her stories and teaching wisdom with us.  Yet another divine appointment!

The neurosurgeon called me on my cell phone when the surgery was over.  He said it had gone very smoothly and she was doing well and we should be able to see her shortly.  Sometimes they let parents back into recovery and sometimes they wait until they are up in the PICU, so he said to ask at the desk about when we would be able to see her.

The front desk told me they would call us when they got word.  We waited about an hour, so obviously they were waiting until she was upstairs to bring us back.  When the lady finally called our name, she took us to the elevator and told us to go to the PICU floor and ask for her.

When we got up to PICU, they told us she had just arrived and they would come and get us from the PICU waiting room when she was settled.  We waited for about 20 minutes, but I think they forgot we were out there, so I called back again and we were allowed back.

She looked so pitiful.  She was so pale from the anesthesia, and she would alternate between full-blown crying and pitiful little whimpers.  She had a heart shaped bandage on the back of the right side of her head and another on he tummy.  Both areas were yellowed due to the soap from surgery.  Soon after getting in there I was able to hold her and get her to calm down.  Russell left not long after we got to see her because he had to pick Luke up from VBS (both boys had stayed overnight with Russell's parents and his Dad took him to the church that morning).  We were able to get some Tylenol in her, and she had some pedialyte and kept it down.  (They said she had some in recovery but it came back up.)  As I held her and she slept her color came back, and next time she started crying I felt she may be hungry and probably ready for a bottle.  She downed it in no time!  A little later she was fussy again but it was too soon to give her more Tylenol, so they gave her some meds through her IV to help with the pain, and she drifted off to sleep again.

 After surgery in the PICU- can you see where they went in?  The orangish-yellow part of her head.

Bubba checking on me!

That afternoon Russell came by again- with Luke because he wanted to see her.  He quickly became bored, however, so they only stayed for about an hour.  Later Ally and I were napping together in the chair when our neurosurgeon stopped by to see her.  He seemed happy with her progress.  I had already noticed a difference- not in head size, but she now had a soft spot that pulsated slightly with her heartbeat if she was in the right position just like most babies!  I had never noticed a soft spot before on her, so the shunt was obviously working already!

Ally wanted to be held most of the day, but finally around 7 I was able to put her in the bed on her own without her crying.  She even started smiling at me and the nurses and was acting more like her happy self!  She is one resilient little girl!  She has had 3 bottles, wet several diapers, and is finally back in 'regular' clothes.  As long as she did okay overnight, she should be discharged the next day!

She did great through the night and the next day- you would never even know she had had surgery except for the scars!  She hasn't even really seemed to need any pain medicine since the day of the surgery.  She has been acting like her normal self, smiling and happy.  She was able to leave the hospital the next day around noon.  

 I am going home!

 See how much she's grown since coming home from the hospital?

Since we've been home she has acted normally.  Sometimes she seems to reach up to her head scar; I think it is starting to pull a little because we've noticed that we can see a bit more of the stitches than you could at first on the side of the bandage.  This is completely normal, and we should be able to take the plastic bandages off on Saturday and she can take baths as long as she is not submerged in water (it can be poured on her).  We have noticed the shunt itself sticking out some in her head, but it is not that noticeable and as she grows it should not stick out as much.

Thanks for all of your prayers, emails, texts, and comments!  I knew she would be okay, so my prayer has been that the shunt will be protected from infection, blockage, and failure that would result in more days like today.  We are looking forward to this Sunday being with our DW Alliance friends at the Nationals game with our family!  Ally has been cleared and able to travel, so she will be going with us. (Though she may not go to the game- we're going to wait and see on that, because Ben is staying home with my Dad already.  Even if she didn't just have surgery, it will be a long way to travel and we will be out in the hot sun, so it may not be ideal for any infant.)

Thanks for praying for our brave super girl!

June 13th, 2014- The Last Time

As usual, this post is a bit late, but real as always.

Ally's shunt surgery was scheduled for this past Wednesday.  However, the week before we got a call from the neurosurgeon's office that our neurosurgeon would be out of town on the 11th and they had rescheduled it for the next Wednesday, the 18th.  As a result of this, she will not be the first surgery of the day, but the second.  I was kind of bummed about that, because again she will not be able to eat for so many hours before the surgery.  As a result it is better if the surgery is earlier because Ally is sleeping really well at night, so she can sleep through most of her fast.  

Part of me was unhappy about moving the surgery because I want to get it over with, but the other part of me was glad because I feel like we get a little more time with our unshunted girl.  This week I keep thinking things like, "This is the last Friday she will have without a shunt."  "This is our last church visit without a shunt."

I know so many people would say, "Oh, a shunt is no big deal."  I know it's routine.  I know many people have them.  I know that people with them live very normal lives.  I know Ally needs it to live, and to help with her development.

That doesn't mean it's easy.

They're going into my baby's head.  That's scary- no matter how 'routine'.  She will be scarred forever- and as a baby, it will be VERY noticeable.  Not that I think we will treat her any differently (except we will be watching her for signs of shunt failure or infection), but others might.  And while I'm all for raising awareness of Dandy-Walker and hydrocephalus, I don't want to have to spend all my time explaining to others why there is a huge scar in my baby's head.  

I also wonder how she will handle it.  Lately she's been so smiley and happy.  Will she recover quickly and be smiley and happy again?  Will she have lots of soreness and discomfort?  How will she be a year from now?  Five years from now?  How will we break it to her every time she has to have another surgery?  Will she be scared?  I think Ally has a lot of strength in her, but in light of all of these questions is it any wonder I am savoring every 'last time'?  

I know that everything will be okay.  I know because we have met children with shunts.  One of our new friends updated on facebook, saying that her neurosurgeon said her son was 'just a normal little boy with a piece of plastic in him'.  I know because we have a great neurosurgeon with lots of experience.  And I know because we have a great God who has watched over us through all of this and will not leave us now.

Now for the EXCITING news.  I am currently working on getting together a list of reference families across the U.S.  These families will volunteer basic information to be posted on the Dandy-Walker Alliance website.  Then when families are newly diagnosed and *hopefully* find or are directed to the Alliance website, they will find at least one family nearby who is ready, willing, and able to talk with them about Dandy-Walker and their experiences, as well as help them with things such as Early Intervention, doctor referrals, etc. specifically for their state or area.  It will also have a list of blogs like this one so that as these families start 'googling' they will find real stories of what it's like to have a child with Dandy-Walker- and the hope and joy we have too.  I have had responses from about 35 states, and 2 from Canada and the UK!  I am really excited about what this could mean for DW families- so many families who have responded said they think it is a GREAT idea and may save many lives.

Step 2 is to get the medical community involved.  Once the reference family list is complete and up and running, I plan to send a letter with the brochure the Alliance has created and the state's reference family information to the many doctors that these families have said they would recommend to others.  The day of the last post I had left the college where I am an adjunct this summer and right next door is the Maternal Fetal Medicine office we used to frequent.  Who was walking to her car- but our doctor!  I know that was a divine appointment!  We hadn't seen her in a while so I caught her up on Ally and everything that had happened since her early arrival.  I also told her about the Alliance and the idea of getting reference families and hopefully getting the medical community involved.  She said that the problem was  that doctors often feel uncomfortable telling patients "we don't know what you should expect" as Dandy-Walker is such a wide-spectrum disorder.  On the flip side, often parents press doctors so much for information that they feel compelled to tell them something.  I'm so glad that our doctor was bold enough to tell us 'we don't know- but this is what we think, and this is how we can start to rule out possibilities.'  I think she will be a real benefit to our cause of informing the medical community- she's never afraid to tell it like it is!  I took Ally to visit with her and our point nurse today.  They all just swooned over her (and pointed out how good it was to see her in person instead of in a shadowy sonogram photo!).  And while there we gave them a few Alliance wristbands too!

Russell has also been given the go-ahead by the Alliance to hold a softball tournament, with the proceeds benefiting the Alliance.  He is very excited about it and we will let you know more as plans progress.  He does need some business sponsors so if you or someone you know might be interested please let us know!

Please pray for us Wednesday morning.  We will update when it's all over.  She will stay overnight at least one night and then we will hopefully be home if all goes well.

 Our happy 3 month old girl!

New photos from our family photoshoot!

 Doting, protective big brothers!

The family- thanks for your continued prayers!

May 22nd, 2014- The MRI

'Don't forget to set the alarm for 3 AM.'

Ally's MRI was scheduled for 7:30 AM the next morning.  Since she had to be sedated, she was not allowed to eat for 4 hours prior (and no formula 6 hours prior, so I had to make sure it was not a fortified bottle).  We wanted to make this as painless as possible, so instead of waiting on her we figured it would be easier just to get up at 3 and wake her to eat.  She's never really had a 'schedule' of napping and feedings since leaving the NICU so we didn't want to leave it up to her!

Russell got up with her and fed her, and she did great with it.  Ally had to be at the hospital an hour before she was scheduled, so she didn't have to go too long after that to go without eating.  I needed to be at school for testing, so Russell was the one who took her for the MRI.  I kept my phone with me all morning and he would text me updates.  

She was a bit fussy as they were leaving for the hospital (getting hungry again!) but otherwise not too bad.  They got there and got her checked in, then went up to the imaging floor.  After a brief wait, they took her back.  Russell was not allowed to go back with her.  He said he could see her through some windows before they sedated her- the technicians were all cooing over her!

He said it took about 30 minutes, and then he was with her when she was done.  He said as she came out of sedation she would get fussy and mad and could hardly wait to eat!  She did so great!  He texted updates to me most of the morning until she was out, ending with this picture, captioned "Hi Mommy!"  

My coworkers thought I was crazy for being at work, but it's a crazy time of year at school and besides, what good was I going to be in the waiting room versus being at work?  I was, however, a bit emotional that morning and went straight to the hospital after work.

We had found out about 2 days before that because of her age and prematurity she would actually have to stay overnight in the PICU due to the sedation.  They told us it was a common procedure amongst anaesthesiologists and was just a precaution.  We were bummed about that but knew they were just looking out for her best interests.

Russell stayed with her most of the day.  His Mom came and sat with her at one point when he had to go take care of a couple of things.  When I got there it was just Russell and Ally in the room.  She looked none the worse for wear, and her nurse just fawned over her.  It was my first experience with the PICU so it was a learning time for me, taking everything in and reading everything on the walls around the ward.

I stayed with her by myself while Russell went with the family to dinner.  Then I took the boys home for bed.  Russell called me not long after that from the hospital, saying that neurosurgery was planning to come by either that night or tomorrow before discharge to speak with us about the results.  I told him to please call me so I could be on speaker with them if I wasn't there when they came and he said he would.

The next day I got the boys to school/daycare and got myself to school.  I kept my phone with me all day but Russell never called.  I texted him at lunch and he said he was still at the hospital!  No one had come by yet and they weren't going to discharge Ally until we had spoken with them.  He was a bit frustrated because since he had stayed the night at the hospital he wanted to come home to shower and change clothes!

By the time the school day was over he was still there.  I went to pick up Luke from school since Russell was otherwise engaged.  In the process, my phone rang.  I stood in the hallway and spoke with our neurosurgeon.  He had been in surgery most of the day which was why he was delayed.  What he told me I didn't want to hear, but I'd been expecting.

Ally was officially diagnosed with hydrocephalus.  A shunt would be necessary.  The pediatrician working the PICU had told Russell he was pretty sure she had hydrocephalus just from feeling her head- he could tell the skull plates were a little bit farther apart than they should be, so we weren't surprised.  While it wasn't urgent (there had been talk of doing the surgery over the weekend!) it needed to be scheduled.  I spoke with him about the option of waiting (the next week was my last week of work, and the following week we were spending most of it at my parents' home almost 3 hours away, to visit with them and my grandmother who was up visiting from Florida, so I kind of wanted to wait until afterward if it was safe) because I didn't want her to suffer or have brain damage due to waiting too long, and he said he thought that would be fine.  If we notice any changes that indicate the fluid build up has become more severe (vomiting, lethargy, loss of appetite, bulging soft spot, unconsolable fussiness/crying) then we may need to take action a bit sooner, but he thought we would be fine to wait until the 2nd week in June.  I asked him about other types of surgery for hydrocephalus, and he said he thought a shunt would really be best for her.  I also asked about specialized shunts (programmable or magnetic) and he said traditional would be all she would need.

So there we have it.  On June 11th at 8:15 AM our girl has the first of many surgeries through her lifetime.  I read a statistic somewhere that of all of the 'implants' that can be done surgically (stints, pacemakers, etc.) shunts have the highest failure rate of all of them.  Many people with shunts have dozens of surgeries in their lifetime.  Our prayer now is that not only will this first surgery go well and she recover quickly, but that she will be protected from infections, failures, and blockages that will necessitate surgery more frequently.  Thanks for your prayers!  More exciting updates soon! 

May 17th, 2014- The Realization & The Run

I was getting excited for the coming weekend- to see my family again, and to do Carter's Run together.  Thursday night after the boys were in bed I was on Facebook, browsing my newsfeed.  I saw a post from someone in our Dandy Walker parents group (a closed group) where they had posted pictures of their child and how blessed they were by them.  (I believe it was a newborn, we did the same on the group page when Ally was born to introduce her to the 'Dandy-Walker world.') 

What struck me, however, was something that I've seen many MANY parents in this group post, but for some reason at that time it hit me like a ton of bricks: 'I'm so glad I didn't listen to the doctors when they recommended I terminate.'

I'd had enough.  It was the final straw.  I was so SICK of seeing parents post similar statements on Facebook, underneath pictures and videos of their smiling children.  Doctors are recommending termination of dandy walker pregnancies across the country, telling parents their children will be 'vegetables' or have 'no quality of life'.  Obviously, if a person was missing a part of their brain you would think that they would have some severe issues- myself, not being from a healthcare or medical background, might have thought before this that if part of your brain was missing you would not be able to even survive.  However, this could not be further from the truth- and these are DOCTORS telling this to parents.  So many Dandy-Walker kids defy their diagnosis daily and grow up to be well-functioning adults.  Of course, every case it is different, and some are more severe than others (especially if paired with a genetic abnormality, which Ally does not have), as we were told early on in Ally's diagnosis and have seen firsthand since- but 'no quality of life'?  What a lie!  It made me sad- these parents on Facebook had chosen life, but how many more had been terminated that could have had fairly normal (if not completely normal) lives?

I sent a message to Eric Cole, the founder of the Dandy-Walker Alliance, with my frustration and outrage.  He responded that this was exactly why the Alliance was formed, (I finally understood why the car magnet says "A life worth saving" on it) and would I happen to be attending Carter's Run since I was in the same state?  When I told him we would, he said to come to the Dandy-Walker Alliance tent to meet him and some of the Dandy-Walker kids. I was excited to realize that for the first time I was going to get to meet other kids living with Dandy-Walker and talk with their parents.  That night I also sent a message to Carter's Mom, Lisa, via the Carter's Run Facebook page to let her know we were going to be there and that we would like to meet them, but we knew they would probably be really busy during the event.

Russell has been gung-ho about wanting to raise money for the Alliance to use for its projects.  But that is the furthest thing from my mind now.  Not to sound completely pessimistic, but I don't believe we will ever find a 'cure' for Dandy-Walker.  I could be wrong, but if there ever is one I don't believe it will be found in my lifetime, or even Ally's.  How do you 'cure' a developing fetus from not having a fully developed brain?  How could a brain transplant be possible- or even a partial brain transplant (of the cerebellum)?  Maybe one day this will be possible, but for now I don't have a lot of enthusiasm about the possibility.

My mission is education- I am an educator by profession, after all.  People have to know what Dandy-Walker is, and that it is NOT a death sentence, or a 'no quality of life' sentence.  And while a lot of that can be done by parents of Dandy-Walker children (and Dandy-Walker adults) with the help of the Alliance, my belief is a lot of it must also come from within the medical community itself.

As mentioned in some of our earliest posts, our doctor at Maternal Fetal Medicine was excellent.  She did not sugarcoat anything, but she also didn't leave us without hope.  And she helped us systematically eliminate possibilities (the infection, genetic abnormalities) with testing (first blood tests, then the amniocentesis with SNP array, along with a fetal echocardiogram and fetal MRI) but always gave us all the options with full details about each.  Termination was only brought up twice- once with the initial consult with the genetic counselor where she gave that as an option and we said no way (and she never brought it up again) and then with our doctor when she told us that if any of our testing showed an issue with Ally that would cause her not to survive, (or survive for long, such as Trisomy 13 or 18) she would do everything to make sure I was fully protected during the birth process and termination may be an option with that.  It was NEVER pushed on us, and we were NEVER made to feel we were in a hopeless situation.  In fact, they directed us to the Alliance and to local support groups for special needs families as well.  They always made sure we were fully informed and were open to questions anytime.  EVERY PARENT needs to have the same care and concern we did- with ACCURATE information about their child's diagnosis and condition.

My hope is to get in touch with our doctor and ask her to help us figure out how to get the word out to the medical community about the truth of Dandy-Walker.  I'm really not sure what that looks like, but I'm hoping she can help out and give me some ideas.  The Alliance has put together a great brochure for genetic counselors and doctors to give to families when they first get the diagnosis that is full of good information and encouragement and is very easy to understand.  If we can get that out across the country to the people that need it- doctors and new DW families- that will go a long way in stopping unnecssary terminations of DW pregnancies.  Educating the medical community is my first and ultimate goal.

My second goal is to partner with the Alliance to create even more resources for families, especially newly diagnosed families.  I am hoping to find a few 'point families' in every state (with the help of the Facebook group) that the Alliance and doctors can list and provide for new families so they have someone close by to get in touch with and talk with when necessary and would be familiar with doctors and services in their state.  Another Mom on the Dandy-Walker parents group was asking for the links to all the blogs like mine to link to hers- I'm hoping we can actually ask all families with blogs to send the links to the Alliance so they can have a whole page with them for families to have a reference for life with Dandy-Walker and read messages of hope and encouragement (hopefully, also listed by state). 

I was greatly encouraged Saturday at Carter's Run.  My family had a great time at the event.  Everyone except Dad, Luke, and my youngest nephew walked the 5K (well, Ally and Ben were pushed) and my brother even ran part of it.  Afterward Luke did the 1K fun run with me (whining almost the whole way, but he did it).  When all the racing was over, the boys went to watch the magician at the fun fest and I went with Ally to the Alliance tent to meet Eric Cole, his wife Andrea, and their son Ryan, age 9, who wears glasses and a huge smile and uses the aid of a service dog.  We also met Noah, age 2, who has a shunt but otherwise has developed normally and on schedule; Shawn, age 6, who walks with the aid of braces and who thought Ally was SO cute :-), and Carissa, age 24, who was shunted at 10 (and has never had a revision!) and lives under her mother's care.  I really enjoyed hearing from the other families about their children and the journey they have been on, and being able to get advice from them as Ally has barely started her own journey!  I unfortunately did not get a lot of pictures while at the tent, but here are some pictures from our day.  (Sorry, some of them are sideways and I can't get them to turn!)

 Mom, Luke, and my nephew warming up.

 Ben is ready to race!

 My brother and sister-in-law warming up

Waiting to start!

 The Great Zucchini!

 The 1K Fun Run...at least he looks happy at the finish!

Can I tell you the best part of the run?  I was pushing Ally the last leg of the course.  There were 2 women walking a few paces in front of me.  The course wound through a neighborhood and came out onto a street with some shops.  A man was going into a nearby building and I guess saw all the people walking and the course being protected by local police and asked the 2 women what cause were we walking for?  They replied, "For Dandy-Walker syndrome."  He asked what that was, and they couldn't really give him an answer.  I slowed down and said I could tell him about it.  I explained in about 20 seconds the best I could- that Dandy-Walker is a brain malformation where part of the brain is missing in the back, the cerebellum.  Often because of this gap it results in hydrocephalus.  Children with Dandy-Walker may show no signs of having it, or may have developmental delays or issues with motor skills and mental or learning issues, among other things; it is a large spectrum of possibilities.  He said, "Thanks, I'll have to look it up at home."  I told him to go to www.dandy-walker.org, and continued down the course.

And that, my friends, was well worth 3.1 miles.  

Ally and I finished together a few minutes later, running the last bit, in about 45 minutes.  The culmination of the beginning of a journey for me, as Ally continues hers.