October 19th, 2016- The Milestones and Marvels

Wow, it's been so long since I've posted- I hope I don't forget anything!!

When our story last ended it was May.  In the later part of May Ally and I headed to northern Virginia to attend the 5th and final Carter's Run for Dandy Walker.  Ally and I drove to my parents home Saturday, and then drove to Ashburn after dinner and stayed overnight in a hotel.  We got up early the next morning to head to the run.  Once again, we did not run (or walk), but we laughed and talked with old friends and met new ones at the dandy walker tent.  We had a great time, and after the run was over we went to the  show with The Great Zucchini- and Ally got to help him on stage!  She loved it and had a great time.  We are sad that we won't get to see our dandy family every year at this event, but hopefully we'll be able to be regular attenders at some of the major league baseball games for dandy-walker alliance day (we didn't get to go again this year).  So far, they have had games at the Nationals, Orioles, and Pirates, and since we love baseball we hope to make these games a part of our schedule each year they are held.

 

The summer was great!  We got to go on our first family vacation in YEARS thanks to my parents, who took us and my brother's family to Ocean City, MD in June.  We grew up going there and it was the first time at the ocean for both Ally and Ben.  We stayed at a house on the bayside of the city, which had a great little beach area with very calm water, which the younger kids loved, as well as a pool.  We ventured across the way to the ocean side for one day, but the water was pretty rough for the youngest kids.  Ben was sent underwater several times, and Ally was so scared of the waves she wouldn't go in the water hardly at all!  (I always thought she was fearless, so the ocean is now her nemesis!)  We had a great time with family doing other beach activities, including the amusement park and mini-golf.  My brother and I took the kids mini-golfing, and while he took the 3 oldest I took Ben and Ally.  Have you ever tried to mini-golf with a 4 and 2 year old?  It is like herding cats.  Trying to get them to wait their turn, hit the ball, make it go the right way...ugh!  And at one point- Ally fell in some water!  She slid right down the short embankment into about a foot of water while I was trying to help Ben with his turn and my back was turned.  She was soaked from shoes up to about halfway up her shirt- and we were only on hole 4!  My brother reached in and fished her out, and boy she was upset!  She wanted to go home and change, but we had paid for golf and we were going to finish, so she just had to suffer through it.  Oy vey!

Fun at the Trimper Rides!

While we were there we had beach pictures taken, and loved how they turned out.  Ally's picture is absolutely beautiful!

The rest of the summer was great.  We did swim lessons at a local pool which all of my kids loved, especially Ally.  She is getting really confident in the water.  It's hard to believe that next summer is the last time I have to be in the water for lessons with her.

Of course, summer is never complete without a visit from Granny up from Florida.  She came to stay with my parents in June for a week so we went to visit as well.  She loves seeing all the great grandkids!

We tried to stay busy during the summer.  We went to library storytime, various parks and playgrounds, and occasional other fun events around town (like decorating cookies at AC Moore!).  I really treasure my summers with the kids.

Wading in a local creek

Another funny story- Ally learned to climb out of her crib!  Neither one of the 2 boys ever did that- leave it to our adventurous Ally!  When she finally took a pretty good fall climbing out we took off the front and she now has a daybed.  She is so proud of her big girl bed, and she does great in it!

In August, Ben, Ally, and I went back to school.  Ally went back to the Red Room (2s room) at her preschool- now full time 5 days a week.  She loves her friends and teachers there- and so do I!  She still loves painting and all of the crafts and coloring as well.  Recently she took the ASQ assessment to determine developmental progress of preschoolers for their age.  At the conference with her teacher, no surprise- Ally is on track with no concerns in EVERY CATEGORY (communication, fine motor, social, etc).  Recently her teachers told me that Ally can recognize not only her own name, but the names of every child in her class.  On a chart she was pointing to names and saying, "That's Brantley.  That's M.E.  That's Elena..."  They thought maybe it was a fluke, but when they mixed the names up she could still do it!  Our Ally girl is doing so well and we are so proud of her!

First day of preschool!  Notice her hairclip!

Other exciting news comes from her doctors.  In July Ally had an appointment with neurosurgery.  It was just a follow-up, and everything looked great there and she doesn't need to go back for 6 months.  In September she had her 2 and a half year checkup.  Everything at this appointment was great, and her pediatrician even told us that her muscle tone had improved- so much so that she may not even need her orthotics anymore!  I have been concerned that she may be getting close to outgrowing them (she has not complained about them being uncomfortable, but it is getting a little more difficult to get them on her in the mornings), so we asked about it, and the answer was more than I was hoping for!  We contacted Easter Seals and are hoping to have her physical therapist come over soon to have a look and give the final word!  Fingers crossed!

 

Other fun milestones- in September Ally started Awana Puggles.  She often cries when being dropped off (unusual for her) but she loves Puggles!  The second picture shows 2 of Ally's newest fads.  She loves having a ponytail, and actually asks for one and will sit and let me do it!  (And her hair is finally long enough!)  She also LOVES her kitty shoes, which she's wearing in the second picture- without orthotics for the first time (we decided to try it out)!  She often wears the kitty shoes to bed and ALL night long since she can't wear them to school or to play.

The rest of the year should be full of lots of fun events- our annual trip to the pumpkin patch, Halloween, Thanksgiving, Christmas, and some other miscellaneous events as well.  We hope to update again sometime after the new year- unless something unexpected comes up.  We continue to hope and pray for good health and a clear, functioning shunt.  Until then, we will continue to watch our girl thrive and grow and light up our lives as only she can!

May 12th, 2016- The 2 Year Old

So I was supposed to write this post over spring break back at the end of March.  It was the perfect time- just a few weeks after Ally's birthday, and I would have a whole week off to get it (and a list of other things!) done.

Well, everything got checked off that list- except the blog post.  I guess it was writers block.  I kept thinking and thinking about it- especially when I would post on the dandy-walker parent page for a new parent to check out the blog, or when my mom said "I checked the blog- you haven't updated it in a while."   So here it is- finally!

March 2nd was Ally's 2nd birthday!  Her birthday was on a Wednesday this year so the actual date was fairly uneventful- we went to school and work and she went to Russell's parents house, and that night the boys had AWANA and Russell was home with Ally and put her to bed.  So I honestly only got to see her for a grand total of maybe 3 hours.

The day after Ally's birthday was her 2 year check-up.  Everything was fine, the doctor was very impressed with how well she's doing.  She is a bit low on the weight chart (3%) so her pediatrician wanted her to start some pediasure.  Ally often refuses dinner and sometimes other meals too.  She's definitely not starving, but she also has a liking for snack foods and junk foods.  She will try to get them at all costs!  (One time I had gone grocery shopping and bought a container of cookies from the bakery.  As we were unloading everything she managed to find the container and get her hand through and grab a small handful of cookie and put it into her mouth before we could snatch the package away!  Silly girl!)  

The pediatrician recommended that we give her pediasure in the evenings if she didn't eat a good dinner.  We tried both the vanilla and chocolate pediasure- and she will NOT drink it!  She doesn't like it at all.  There is the strawberry one, but I'm afraid to buy it because it is so expensive and I'm afraid she won't like it either.  So far, pediasure has been a bust!

Ally's birthday party was that Saturday.  All of her grandparents came (except my Dad- tax season) and my brother and sister-in-law and 3 nephews, along with a few friends from church.  When planning her party I was having a rough time- with her birthday basically being in winter and the weather being very unreliable, outdoor parties are not going to work.  So I had to figure out an indoor party that wasn't going to cost me an arm and a leg (our house, being fairly small, doesn't really work well for parties with more than one or two families either).  Our mall has an indoor playground facility/business that does parties, but I didn't like the packages and they were more than I wanted to spend for a 2 year old's birthday party anyway.

So I came up with a great idea- what if I paid for everyone to play for an hour, and then we went into the (abandoned) food court for cake and juice?  I wanted to make sure this would be okay with the mall (I didn't want to get kicked out in the middle of her party!) so I called the mall offices.  I explained what I wanted to do- and assured them I was not bringing lots of food, just cake and drinks (there are other restaurants in other parts of the mall so I didn't want them thinking I was stealing business from them).  The woman I spoke too (didn't get her name- not smart) said "Oh, that would be fine, no problem, you do that and have a good time!"  Problem solved.

Ally's party was Minnie Mouse themed.  (She had a cute dress a friend lent to us and everything!)  I made bows as party favors- but unfortunately they ended up getting thrown out with the trash while cleaning up and we couldn't find them.  :-(  The day of the party I showed up early to bring everything in and set up the table.  Since the food court no longer had any restaurants in it, the mall had taken most of the tables and spread them out throughout the mall.  I retrieved 3 of them and put 6 together to make a long table, and put a plastic tablecloth over the middle of them.  That was it- no balloons, no other decorations.

When everyone showed up, we went to play in the playground.  The kids were having a great time, and so was I- until my mother-in-law came over with a security guard.  He asked me about the tables and why we had done that.  I told him about the party and that I had called the mall office to ask for permission and they had said it was fine.  We were not blocking the flow of traffic or any stores.  He said this was very unusual- who was going to clean this up?  Who did I speak to?  Did I tell them when I was doing this?  He would have to go and make some calls.  I was so upset and told him I would clean up the area and put the tables back, there would be nothing to worry about.  He went off, and the janitor came over to us.  She was an older lady, and at first I thought maybe she was the one who had reported us because she was afraid she would be stuck cleaning up- but she was on our side!  She told us "Don't you worry about anything honey- I will clean up for you."  I told her oh no ma'am she would not but thank you.  My mom had been speaking with her and told me her name was JoAnn.  After a few minutes the security guard came back and told me they would allow us to stay but that this was 'highly unusual."

As we did the cake, I saw JoAnn hanging around the outskirts of where we were, sweeping up.  When we started presents she came over to me and asked "Who's the birthday child?"  I pointed out Ally and she walked over and handed her two $5 bills.  I had been so unnerved by the whole situation that I had been on the brink of tears- and that act of kindness took me over the edge.  I just hugged and thanked her and cried.  To an 80 year old janitor with a disabled husband, $10 is a lot of money.  I will never forget that as long as I live.  (The money went straight to her savings account, by the way.)

As for the rest of the party, it went great.  All of the kids, including Ally, had a great time playing and then eating cake and opening presents.  Ally got some very cute things, including beach items (swimsuit, towel, cover-up, hat, and sunglasses), books, a tea set, a Minnie Mouse potty, play food for her play kitchen that she got at Christmas, musical instruments, a talking Care Bear (her new favorite show at the time) and a mermaid tail blanket with her name embroidered on it (made by Nanny!).  She had a great party in spite of the hiccup.

Whee!

She loves to swing!  Isn't her dress so cute!

Fun playing on the indoor playground.  She loves playgrounds so this was perfect for her!

Minnie's 'Bow-tique' Cake!

The next Monday was a long awaited day for me- she finally started preschool!  I had been so excited for her to start school and just absolutely love the school Ben has attended the past 2 years, and I knew Ally would love it too!  I was nervous about dropping her off- would she cry?  But she did great!  Ben stayed with her and she was very interested in all of the new people and toys, so she had no problem being left there.

Before, with proud big brother

At pick up!  She had a great day!

Ben was SO excited that Ally was at school with him.  All day that first day he would say, "Want to see my sister?" and then try to drag them over to see Ally.  The first few weeks both of their teachers would say that they would 'disappear' and they would find them in the other's classroom.  (Their school is one very large room divided into three classrooms by partial walls so there are no doors to the rooms.)  One teacher told me that one time she saw another kid push Ally, and Ben saw it and ran over and said, "You don't do that!"  Way to go big brother!

Ally has loved school.  She comes home dirty almost every day, and that's a win in my book.  She usually has smudges all over from the rubber mulch on the playground, and she will often have paint on her clothes.  She loves doing crafts with her teachers!  (Her teacher in her room also taught Ben last year, and she said she would have to BEG him to do crafts most of the time.  Ally wants to paint the paper, the table, the paper towels...!)  

The best part, though, is that Ally is loved by her peers.  Ben's best bud at school always asks where she is when he sees me come in with just Ben.  Her teacher says the other kids ask where she is on her days out too.  She told me "They don't ask about any of the other kids.  Just her."  I'm so glad she is doing so well, and that she is loved by so many.  I wanted her to go to school not just so that she could learn, but so that she could make friends, and she has far exceeded my expectations.

Then of course there was Easter.  This year Ally was old enough to participate in the festivities.  She had lots of fun during the Easter egg hunt at school.  And it was her first time getting to dye Easter eggs.  She was fascinated!

At the Easter egg hunt at school.  She had a great time finding eggs with Ben!

She kept stirring the dye and taking out the spoons.  And she kept picking up the finished eggs before they were dry.  The pink egg was her favorite!

Easter Sunday!  So cute!  Her hair is getting so long!

We've made it to another May!  May is Dandy-Walker awareness month and also when we go to Carter's Run to meet up with our Dandy family friends (this is the final Carter's Run, sadly, and will be held Sunday).  Hopefully it won't be too far into the future before I can blog about the experiences we will have this month (school is over in just a few weeks, so no more excuses!).  There are some exciting ones coming up, so stay tuned!  And thanks for your continued interest in our girl!  Wear some gray this month!

 

Graphics done by Ashley Nicole Ickes, another Dandy parent from Pennsylvania.

January 25th, 2016- The Snow Day Update

Sorry to be silent here for so long.  We are at a point now where life is somewhat normal and therefore very busy, so certain things get pushed to the back burner (like blogging!).  However a visit from snowstorm Jonas is just the thing to give this teacher a little bit of time to catch up.  Sorry to keep you 'in suspense' for so long!

We called her our 'little snow hobo' because she was so mismatched!

She was queen of the mountain!

All 3 of my snow bunnies!

Looking back over the last several months, there have several developments in Ally's life.  The first one happened in the fall.  We had a visit from Ally's case manager with Early Intervention that included a visit from her physical therapist to just get some insight on her physical development and to check up on her orthotics.

Everything went great at this appointment- they did a screening to check on various areas of development (social, verbal, fine motor, gross motor, etc.) and Ally's right about where she should be with everything!  However, we did hit a snag at the end.  When the physical therapist took off Ally's shoes to look at her orthotics, she was concerned because what Ally had on was NOT what the therapist had intended for her to have.  She pulled out her phone and showed me pictures of an othotic called Sure Steps, which looked very similar to what Ally had except it didn't go all the way from heel to toe on the bottom, but stopped about where the arch of the foot is.  She told me they were designed for kids with low tone (what Ally has) and enables them the use of their toes more for jumping and other movement.  Not only were her orthotics not what she had wanted, but Ally was coming close to outgrowing them, and she'd only had them for about 6 weeks!

Needless to say I was pretty frustrated with all of this, and I'm still not sure why this problem ever began in the first place.  Our physical therapist was the one who made the referral to the orthotics place and communicated with them, so it must have been something between her and them that got misunderstood.  I don't remember the physical therapist ever using the term "SureSteps" with me before we got them originally, but it was easy enough to remember so if I had heard it I would have asked them about it at the initial appointments.  The therapist said she would call them about it.

A week or so later we had an appointment and went in to see the guy who fitted Ally originally.  You probably don't remember from the previous post but when Ally finally received the original orthotics I messed up the appointment and came a week early, but they squeezed us in- with a different person, because the guy we usually see wasn't in that day.

So he asked what had happened and I said I didn't know how the mix up had happened.  I also told him about the other guy cutting the toe line of Ally's orthotics really close to her toes and not leaving a lot of room for growth.  He agreed, and said he usually left about a quarter of an inch (I think) at the toe to allow for growth.  When you looked at the bottom of her foot with the orthotic on, you could see her sock already over the toe line.  She had definitely outgrown them.

So he took some new measurements (no cast needed this time, just a few measurements of various parts of the foot) and told me they would take care of it, no charge.  Thank goodness- we had gotten a grant from Easter Seals for the original orthotics so I didn't think we'd be able to get it again, and they were not cheap!

So a few weeks later we went back and got them.  Immediately I could tell a difference- Ally started wiggling her toes once they were on!  I think she likes these much better than the others anyway.  We've had no issues with them since.

 

Ally's new orthotics: Sure Steps!  We went with a flower pattern this time, but stuck with purple of course!

We went back to neurosurgery in September and saw Ally's actual neurosurgeon this time.  Everything was fine, but he did say he would like to do another MRI while we knew her shunt was working well so we could have comparison images for later.  After playing a lot of phone tag with the hospital, we finally connected, and then they had to contact Ally's insurance to get approval.  In December we got notice they had scheduled it for January 4th.

The 4th was a Monday, but a workday for me, so I was able to take off easily and take her for the MRI.  It was scheduled for 10 AM.  The frustrating thing about the time was that she was going to have to be sedated for the imaging- which meant no eating and drinking beforehand.  I was NOT looking forward to the cranky toddler I'd have to deal with for several hours who would not understand WHY she was not allowed breakfast.  However, I was able to distract her beforehand fairly well.  I had kept her late (and kept offering her food!) so she got up a bit later than usual.  Then we took Luke to school (he normally rides the bus but we had to deliver something rather big to school with him) and went to the vet to visit our cat, Logan.  SIDE NOTE: Unfortunately, later that same day we had to put Logan down.  He had urinary blockage and after everything the vet had done his kidneys were shot.  The child this affected most was Ally- she LOVED Logan!  She would see him and yell "Kitty!" and hug and love on him (sometimes a bit too much, but he tolerated her well).  A week later when I brought home the empty carrier, she came running over looking inside and crying "Kitty!" with delight.  I had to tell her no, kitty is gone now.  We had all gone and said our goodbyes to him, but of course she didn't understand that.

Anyway, back to the MRI.  In spite of not being able to eat, she did EXTREMELY well.  She only asked for food a couple of times at home after the vet visit (she would walk to her seat and say "Eat!"), and I would say "No, not yet- come on let's go _________!" and she would!

We got to the hospital around 9:30 and I went to check her in.  We were in check in until almost 10:00 (her appointment time); it took forever!  We finally went up to the imaging floor after getting checked in.  They took us back pretty quickly and told me what to expect.  We got to talk to the anesthesiologist next and she told me what would happen.  I was a little surprised because she said I could stay with her until she was asleep (she would have a mask) and then I would go out for the procedure and they would come get me when it was over.  When she had the first one done when she was a little over 2 months old Russell was with her and he basically had to hand her over and walk out.  I was glad I would get to stay with her until then.

By now it was close to 11:00, and Ally was getting pretty sleepy anyway.  We sat down on the cot for the machine itself and the anesthesiologist put the mask up to her face.  She didn't protest at all!  She was asleep pretty quickly and they got her laid down on the cot ready to go into the machine.  I gave her a kiss and snuggled her bear we had brought beside her and walked out.

I ate lunch I had packed in the waiting area and talked to my Mom and Russell on the phone.  They came out after awhile and said she was done.  When I went in, the nurse was holding her and she was all upset and crying on her shoulder.  I think she was just so out of it- she was hungry and tired but they had just woken her up again!  They took us to a hospital room to recover.  They brought her a juice box and some graham crackers.  She didn't seem too interested in the crackers for some reason so the nurse asked "Does she like goldfish?"  I told her "If you bring her goldfish you'll be her best friend!"  So she came back with a bag of goldfish and turned the TV on to Mickey Mouse Clubhouse and she was happy!  They had to watch her for 30 minutes and make sure she ate and drank okay, and then we could leave.  Ally of course did stellar and we were out of there pretty quickly and made our way home (and to the crib for a real nap!).

We had a follow-up appointment with neurosurgery just last week to take a look at the images.  Everything looked great- he showed me where the shunt was in the images and her dandy-walker 'cyst' (fluid).  We also looked at her corpus collosum (the part of the brain that connects the two halves): when she was diagnosed in utero they said that it might be small but imaging after she was born would be a better indicator.  I am happy to report that Ally does NOT have agenesis of her corpus collosum, meaning she does have it and it looks pretty normal.  Not that finding out she didn't have it would have been some devastating blow or affected us or her in any way at this point (she's doing great, not like it would affect her 'now that we know'), it's just nice to know what the diagnosis is!

Ally had another adventure of her own just a few days before the follow-up appointment.  She stays with Russell's parents while we are working, and she took a little fall at their house off the arm of a chair and smacked her head on the floor.  Of course this would be alarming for anyone, but especially someone with a shunt.  Also, after the fall she vomited twice and was a bit in a daze, so Russell's mother called the pediatrician's office and they told her to call an ambulance and get her to the hospital.  However, true to form, Ally perked right up when the firemen and EMTs arrived!  Luke was off from school that day and was staying with them too, so they all got a ride in an ambulance.  I left school early and picked up Ben and met them there. (Russell unfortunately was out of town with work, which was driving him crazy!)  Honestly, if my mother-in-law hadn't told me what happened, I'm not sure I would have believed it the way Ally was acting!  All 3 kids were all over the room driving us crazy!  The doctors told us they didn't want to do any imaging (to avoid overexposure to radiation) because it didn't appear that any damage had been done to the shunt, and even if she did have a concussion it was probably mild and wouldn't show up on imaging anyway.  They wanted to just observe her for about 3-4 hours after the incident- and since she had a shunt they wanted to push it to the 4 hour mark.  We left close to 6 PM after her fall around 1:30 PM.  For the ER, it could have been a lot worse!  So that was Ally's first ER adventure- hopefully the last for a LONG while!  

Thankfully the follow-up with the neurosurgeon was just 2 days later, so he felt her shunt and said it seemed to be intact.  He also said it was really common for kids to be dazed as Ally was after a blow to the head.  She may have had a mild concussion, but we haven't seen any other affects from it since then. 

Otherwise, Ally continues to grow and thrive!  We have her in a music program called Busy Beats.  It is done through Easter Seals and is a lot like Melody Makers, but is run by a licensed music therapist.  She writes goals for each of the kids and sends take home ideas and gives 'discharge summaries' at the end of the session.  Russell's parents take her to Busy Beats because it is once a week during the day and say she LOVES it!  She was really shy at first, but the music therapist says she has really become a leader in the group and is doing really well.  She met most of her goals for the first session, and she is now in her second session this winter.  Russell's mom also takes her to storytime at the local library.  Ally loves books anyway and storytime intertwines books with music and movement.  Russell's mom says she has become much more involved during storytime as well.  We are so proud of our girl!

We are hoping that Ally will start preschool at Ben's school 3 days a week after she turns 2 until the end of the school year.  However, we aren't sure if there will be a spot open for her then, but she's already on the list for starting 5 days in August!  She has gone to the school a couple of times recently as we've picked up Ben and all of the teachers just fawn over her!  I can't wait for her to go there too!

Thanks so much for your continued interest in our girl!  Please check out Ally's friends page- we have some links to the pages of others who are in this fight too (many harder that we are) and could use your support and prayers as well.