S-P-E-L-L-I-N-G

A few months ago, Emma started showing an interest in spelling. This prompted us to put note cards all over the house labeling items so she could see the words we had been saying to describe them. We knew that she could distinguish the letters from playing with her foam letters and being able to find the one we asked for correctly. Having the note cards up quickly led to her wanting to follow along by touching the letters on the cards as we spelled the words to her. While it made it much more time consuming walking around the house (because she wanted to stop at each note card and ask us to spell each word every time we passed them), it has had a huge impact on her.

In about a month, she has not only started to spell words herself, but she is spelling over 50 of them! I was thrilled when she started spelling some of the words that we spelled everyday (like light, door, and hug), but then she left me speechless by spelling the plural form of words when she wanted more than one (like kisses and hugs). We had spelled them for her, but she knew to spell the plural form when she wanted more than one of something.

As of today, here is her current list of the words she can spell (yes it is categorized and I am tracking the list on my phone- I can't help myself):

PEOPLE:
Emma
- Bug (I call her "Little Bug")
- Squirt (Daddy Ryan calls her "Squirt")
Mommy
Daddy Ryan
Jill
Mimi
Elmo

PLACES:
Home
House
- Chair
- Table
- Door
- Light
- Bed
- Bath
- Potty
- Mirror
- Big girl bed
School

ACTIONS:
Hug(s)
Cuddle(s)
Kiss(es)
Wiggle(s)

FOOD:
Milk
Food
Bite

COLORS:
Gray
White
Blue
Pink
Red

DAYS OF THE WEEK/MONTHS:
Sunday
Monday
Wednesday
Thursday
Friday
April
May

CLOTHES:
Pants
Shirt

OTHER:
Car
Fish
Piano
Love
Hi
Wind
You
Spell
Hair
Night night
On
Dog
Leg
Star(s)
Up

Most of the time, when we are spelling, we have to initiate the activity and give her something to spell currently. But she has already started initiating it herself and randomly spelling words without prompting! Seeing her not just learning but thriving gives us such a strong sense of pride and hope that we can't wait to see what tomorrow brings. She is certainly one of the most amazing little girls either of us has ever known and we are so lucky to be able to call her our daughter.

BIG Girl Time!

Emma has had several BIG changes this week as we make some significant transitions in her life to becoming more independent. At four years old, she is still used to being carried primarily from one place to another- bed to changing table, changing table to bath, etc. And at over thirty pounds, it is really starting to wear on those that carry her, like me.

When she came home from her weekend visitation with my ex, she came home to a new BIG girl room- we removed her crib and replaced it with a full size bed with rails and pillows galore because Mommy is a little bit of a nervous wreck when she can't be around to keep an eye on her. A new baby monitor has given me some piece of mind though. We opted for the low profile box spring and set up the bed frame to be on the lowest setting as well to keep it closer to the floor in the event that she was able to circumvent all the barriers that we made to keep her safe. Emma loves it and calls it her "big girl bed." It is even big enough that Mommy and Daddy Ryan can lay down with her and snuggle- which she asks for most nights when we put her down in it. I've noticed that she really doesn't move around much now either- another big change from her crib, where she was all over the place all night long. I'm sure the new mattress is much more comfortable and makes a big difference. Her other furniture still lines the hallway outsider her room, and probably will until a time where I'm sure we aren't moving back to it.

Then, on Tuesday, she got her custom wheelchair which is meant to address her scoliosis. While it will also give her a chance to be more mobile once she learns how to move herself around with her new wheels, the main purpose is to brace her back when she is in the sitting position to keep the curve in her back from getting worse. At my future brother-in-law's rehearsal dinner Friday night, she started rolling herself forward enough so that she could move several feet across a room over to me to get a hug. It won't be long before she is moving around the house and choosing where she goes. While that does make me nervous, and reminds me we need to finish baby proofing the cabinets in the house, I'm ecstatic about the idea that she can start making up her mind on what she wants to do and then do it herself! Of course, you wouldn't be able to tell how well she is doing getting around in it from this picture of when she was getting it fitted before we took it home. To her credit, this was during nap time and she was still very cooperative while she slept.

Just Another Day with Hydrocephalus

This morning, Emma and I got an early start to her day. We were both up, dressed, and ready to leave the house by 6:15 AM so that we could get to Children's in Dallas by 7:00 AM. Her schedule for the day was as follows:

• 7:30 AM - check in for MRI
• 8:00 AM - MRI (annual check of her ventricles and shunt to make sure everything looks good)
• 10:00 AM - EEG (test to see if she is still at an increased risk for seizures)
• 11:00 AM - appointment with her Pediatric Neurosurgeon to review her MRI

We didn't have to be there until 7:30 AM, but I always prefer to be early. Plus, Emma gets her morning dose of Keppra at 7:00 AM so I like not having to worry about doing that during our drive in.

After she had her medicine and was all set in her stroller, we headed to check in for her MRI. The plan was for her to get to eat her breakfast while we waited for her MRI at 8:00 AM. But since we were there early and they were ready for us, we did her MRI first and were done by 8:00 AM. She was wonderful as always and the staff was so impressed they gave her a gift basket! Then it was time for breakfast since we had a couple hours before her EEG. We still wanted to get there early just in case they could get her started sooner because the EEG was an hour long test this time and we had an appointment that was scheduled directly after that was in a different part of the hospital. Thankfully, they were able to get her started early so she was finished with just over 10 minutes before her next appointment. Again, the lady administering the test was so taken by how good Emma did that she gave her a little backpack full of toys! I think she felt bad for giving her such an impressive hair style...

When we saw her neurosurgeon, it was more good news- her ventricles looked great! They were slightly smaller, if anything, than they were from her last check. He was astounded by all of the development she has had in the last year since he saw her last and beyond thrilled at how much music had impacted her life. He said if she continues to do as well as she has been, we will start to go to check ups every other year after our next annual check when she is five years old. This was music to my ears!

Special Needs Trust

While Emma and I had a busy month, I felt that it was important to make a post about something that we were doing for Emma that was not a normal topic. On March 14th, we started the process of updating my will and creating a Special Needs Trust for Emma. For those of you that are unfamiliar with what this is, if you are a parent to a child who may not be able to be 100% self sufficient as an adult, you may want to look into this further. I first heard about it at a Special Needs Resource Fair put on my by local school district's Special Education PTSA last year. I took Emma with me and we found several great resources and learned so much about the services available to us that I hadn't heard of before. One of the people I met was a gentleman that worked at Life Planning for Families of Special Needs and we spoke for about 15 minutes. I realized that I needed to start planning for Emma's future so I could be sure that her needs, no matter what they may be, we taken care of. I have since been working with this group to get my financial planning in line and I highly recommend them to anyone else that needs help.


While I am no lawyer, I can say I have learned much more than I care to think about on a daily basis when it comes to estate planning at the age of 32 from the workshop I attended with some family members. I now have an updated will and a trust in place so that if I was hit by a bus today, Emma would be taken care of and still qualify for benefits she may need in the future. It is hard to think about someone other than me taking care of Emma to the extent that I do currently, but I know that the day will come that she will be more independent and I want her to have that for herself. I will always be her mother, but I also know that I must give her room to spread her wings and fly (even if I secretly run around beneath her with a net in the beginning because I'm still worried about her).


So, while this post is short and sweet, I just want to urge those that are families with children that have special needs to look into the waiver programs (MDCP, CLASS, and HCS). Keep in mind that these programs are specific to Texas, but if you live in another state, check and see if they have their own programs. Some of these lists in Texas have shorter waiting list times (3-5 years), but others are much longer (10-12 years), so it is imperative that you get your child on them as soon as possible. If they are lucky enough to not need any of the services when they grown up, then you can simply pass when their name comes to the top of the list. But if they do, you'll be grateful that you did it now.

She's FOUR and ready to SOAR!

Still can't believe it. She's FOUR! My little bug is was born four years ago. It's amazing to me to see how far she has come in those four years, but I struggle to believe that all of those doctors appointments and therapies all fit in such a short period of time. Sometimes I think back and wonder how we did it all, but I'd rather just enjoy where we are now.

This year, the theme was MINIONS. And there were lots of them - some in balloon form, others in plush. Then, there were the edible ones that took a bit more time to prepare.

Mister Ryan made the cupcakes. Yes, those are Twinkies with sprinkles for hair.

Mommy made the cake.

While she still wasn't interested in the cake or even the frosting, she seemed to enjoy the party. It was the first time we invited kids her age to come so I know that was special to her. It was nice for her to see her friends outside of school.

Once the party was over, it was nap time. During her nap, I opened all her presents and got them ready for her. Once she woke up, she was surrounded by her gifts and had so much fun! What a wonderful day for such a wonderful young lady!

Her HEART is so SMART!

We got the absolute best news on Wednesday at Emma's cardiology appointment. Her doctor told us that the hole in her heart was gone- her heart had healed itself and she would not need surgery to correct the defect! My lucky little bug was given the best early birthday present we could have hoped for and I'm still on cloud 9 trying to find my footing.

While this is exactly the news that we had been hoping we would get at some point, I wasn't expecting to hear it at this appointment. After the tears of joy filled my eyes, my heart melted as I gave her the biggest hug I could. As for Emma's AMAZING heart, I am again inspired by how strong she is as she continues to face adversity with a grace unmatched by anyone I have every known and a smile that lights up my world.

To celebrate, we had a heart cake and will be making her a heart pillow. Here is the cake, but the pillow is still under construction for now. I'll add it when it is finished.

Pay no attention to the huge Minion balloon in the corner...

Surgery #4

Emma had her fourth surgery on January 20th. Thankfully, it wasn't an emergency surgery so it wasn't stressful in that regard. She had been getting ear infections again (regularly) so we went back to her ENT to see what he thought. He recommended her getting her ear tubes put back in and removing her adenoids. He explained that by removing her adenoids, it lowered her chances of having to have ear tubes again and again because they can be a source of the bacteria causing the ear infections sometimes. Since we knew she would be having surgery, we opted to do both in hopes that she wouldn't need more surgeries again later.

This was the first time that I wasn't anxious about everything before surgery. She had had surgery with her ENT before, done well, and would be at the Children's Hospital again where she would be in the best hands. I got her bags packed and was ready to wake her and offer her food/milk just before the cut off times for each that night so she wouldn't be too hungry in the morning. I got her up early to have her last bit of juice before packing us in the car and heading to the hospital. Once she finished and had her epilepsy medication, we were off!

After arrival, we were checked into her room and the Child Life Specialist came in and brought Emma some toys for her to play with while she waited. Once of them, a pink and purple giraffe was hers to keep! It would light up and play music when you squeezed it's chest. She loved it and enjoyed taking Mommy's hand and having it turn the giraffe on.

The surgeries before Emma's took longer than anticipated so Emma's surgery that was supposed to start at ten didn't start until 11:15 AM. While we waited, the "happy juice" medicine kept Emma calm and relaxed. She was content waiting for her turn as long as Mommy kept providing a steady stream of hugs, cuddles, kisses, fish kisses, and anything else that she came up with.

It took about forty-five minutes before her ENT came out and told me that everything went well. Much to her dismay, Emma didn't have to just show she could drink the juice/water mix I had brought her from home like she usually had to do. With having her adenoids removed, they wanted her to eat too before she was discharged. I hadn't brought her any food so we had to find something she would eat. The only thing close was ice cream- not something she likes as she isn't really a fan of sweets. After fighting a couple bites down, we finally got released to go home.

Emma was a little tired and sore from the surgery for a couple days, but was quick to bounce back as always. While it was a day that added a tally to her number of surgeries, any day that is filled with that many hugs and cuddles and kisses is a good one in my book!

Happy Holidays!

Emma and I have been playing with her pat bells quite a bit this month as I've taken advantage of them to play things like "Jingle Bells" with her during the holiday season. One of the other songs we play is "Twinkle Twinkle Little Star" as she knows it well and the melody is easy to copy on the bells. I started by playing them in front of her so she could watch and listen. I decided it was time to get her involved more and gave her one of the bells from the song (the red one). I was planning on having her play that bell each time the song called for it and play the others for her still so she could see and hear it. This quickly turned in to a talent show staring Emma.

She not only could play the bell each time the song called for it, but knew when to play it one time or two times. Then came a different challenge- I changed which bell she had. But still, my little star continued to amaze me. In just a couple short weeks, she was able to learn how to play each of the colors while I played the others. It made my holiday season all the more merry, so I had to share!

CT Scans and X-Rays and Shunt Taps, Oh My!

Emma and I have had a busy couple weeks. On November 12th, she got a viral infection. She was extremely congested and coughed for nearly a week. She stayed home from school Thursday, Friday, and the following Monday, but her pediatrician cleared her to return to school Tuesday and she had been asking to go. After two days back at school, she began vomiting after I put her in bed for the night on Wednesday. After the first time, we got her bathed and all cleaned up. Then came a second wave around 9:30 PM, followed by a call to her pediatric neurosurgeon. Given her last week of fighting off the viral infection, he said to watch her and see if any other symptoms developed. She had no fever and her open soft spot on the back of her skull was not full of fluid. But for some reason, I was still very uncomfortable. I didn't get the sense that her shunt was failing, but since she has been lucky so far and not had a malfunction, we don't know what cocktail of symptoms she will have. When the third wave came and she struggled to purge her already empty stomach, we packed her bag and headed to the Emergency Room (ER) at Children's Hospital.

On the ride there, she had a fourth wave. We finally arrived at the hospital and found the ER entrance. We lucked out as the first parking spot in the parking garage on the ground floor was empty. Once parked, I stripped her down out of the clothes she had on that got messy in the ride there and rushed her inside. Thankfully, I had called ahead and they had put her on a priority list. When we checked in, we were directed to another waiting area. While in that room, she vomited another four times while we waited to see a doctor. It felt like an eternity to me, so I can't imagine what it felt like for her.

When we made it to a room, Emma had to endure test after test after test. They took blood and fitted her with an IV so they could give her medication to stop her nausea. Then came the urine test, but sadly the sample had to be taken using a catheter. Once those were done, next were the orders for the big tests: CT scan, shunt series (7 x-rays), and a shunt tap.

The CT scan and x-rays didn't worry me other than the amount of radiation she would be exposed to. One shunt series is roughly equivalent to one year of natural radiation. I asked that the CT scan be done using a gantry angle in hopes of avoiding any exposure of her eyes and thyroid to more radiation, but was told their machines couldn't do them at an angle. After reviewing everything, the pediatric neurosurgeon said everything looked normal. The shunt tap was next and that procedure did make me nervous. It was her first time to have one and I knew it could be painful. The pediatric neurosurgeon was very kind and great at explaining everything she was doing. They put a numbing cream on Emma's scalp where her shunt was to try to minimize her discomfort. Then came the time to be brave. I held her head still so she wouldn't move when the pediatric neurosurgeon performed the shunt tap. A nurse held down her arms and legs. She was so strong and brave- I was so proud I was tearing up. The pressure was between 4.5-5 and the cerebrospinal fluid (CSF) was crystal clear just as it should be. Visually, there seemed to be no issues with her shunt. To be sure, they took a sample of CSF to be sent off to be tested. 

At that point, we were told, as long as she could drink something and keep it down, we could go home. Here came a completely different set of challenges. Emma is picky when it comes to the liquids she will willingly consume. She loves milk and will also drink watered down juice- but not straight water or juice. She is also picky as to which delivery systems she will happily utilize. This posed a challenge given the cafeteria was closed and the nurse had limited resources. She found some apple juice and used pedialyte to water it down. But the bottle was not the one Emma was used to so she resisted. After the night she had just endured, I can't blame her. Thankfully, after struggling with the juice for around 20 minutes and barely having an ounce, the nurse found milk on the seventh floor. Hallelujah! Once she had three ounces of milk down, the nurse said we could go. We packed up her dirty clothes, got the discharge paperwork, and headed home. We got home just in time for her epilepsy medication. I offered her some milk and she crashed in my lap.

It was a long night for both of us, but I was so proud of her for doing so well despite everything she was going through. I took about an hour nap and worked from home that day so that I could be near and keep an eye on her. I knew it would be a rough day for her getting back to her normal schedule as best she could after being up all night getting tests done at the ER, but she's a fighter. She vomited one more time around 4:30 that afternoon, so I stayed up all night Thursday to make sure everything was alright. Work Friday was a blur, but thankfully she did well all day. We had a follow up appointment with her pediatrician around lunchtime where we were given directions on how to slowly reintroduce her normal diet into her routine after going through everything. She confirmed there was a nasty viral infection going around in our area that was causing the same symptoms Emma had presented with Wednesday night. Emma's system was just already weakened by the other viral infection she had been fighting for a week that this one hit her pretty hard.

I'm extremely grateful that this wasn't her first shunt malfunction, but I know her luck will likely not last forever. We will have several nights like that night where she will show just how strong she is as she gracefully looks hydrocephalus in the eye and says, "I got this, Mommy!"

Yipes! Look at all the STRIPES!

If you are a fan of Mike Rowe and the show Dirty Jobs, he did an episode on the people that run a place called Sharkarosa Wildlife Ranch located in Pilot Point. Here is a snippet of what it was like being a Nanny to some Joeys.

This educational facility focuses on creating engaging experiences for the entire family with endangered wildlife. From the Safari Tram Ride to the animal presentations, you not only get close enough to smell them, you can touch many of them too! For a child like Emma that started off being so tactilely defensive, this place was a good place for her because it fosters an every growing curiosity. And with her newly found and ever growing confidence, she is trying to become more engaged with new environments every day. I was so excited to see what she would think of all the animals that she enjoys seeing on flash cards and in books.

We arrived shortly after they opened, and made a quick stop at the pavilion where the animal presentations take place before we went straight to the Joey pen you see on the video above. We watched two very adorable youngsters hop around and nibble grass while they explored their enclosure. Then we looked at the pen where all the adults were.

Next, it was time for the Safari Tram Ride - certainly the highlight of our visit for Emma. This thirty-five minute ride takes you through pastures where camels, horses, pigs, zebras, emus, endangered deer, zedonks, and zorses come up to the Tram to enjoy feed in the buckets on the sides so you can see them up close. They tell you which animals you are free to touch and which ones to admire with your eyes instead. Emma was happy to touch any animal that she was allowed to admire with her hands that let her. She even made some friends with some of them.

In case you need some translation, Emma was saying "bye" and "see you later, zebra" to her new friend. She was very set on that one particular zebra. I'm sure she would have loved to take it home, but we let it stay with it's friends. (Mommy did end up getting her a little zebra of her very own though. She named it Stripes and loves giving it hugs.)

After the Safari Tram, we stayed for some of the animal presentations, had our picture taken with a sweet young Joey, and enjoyed some sno cones. At that point, it was time to head home for lunch and nap time. It was a wonderful morning and one that I'm sure she will remember. I know I will.

WALKing to a Different Tune

Last year, for the Houston Hydrocephalus Association (HA) WALK, Team Emma Lee raised $1,355. Our goal was $957 - the number of days old Emma would be the day of the WALK. I was overwhelmed that we had so much support and thrilled to have done so well our first year.

Team Emma Lee had an astonishing year this year. Now, in our second year in participating in an HA WALK, we had a goal of $1,328 - again the number of days old Emma would be the day of the WALK. Only this time, I was also Co-Chairing the inaugural DFW WALK. Because the WALK would be local, I also had a goal of having four others join the team and attend the event with us. For the entire team, I set a goal of $3,000 - the number of years old Emma would be the day of the WALK. I was hopeful that we would again reach our goal, but I had no idea how far we would exceed it.

When all was said and done, Team Emma Lee was tied for third place for the number of team members: TWENTY-ONE! I was so thankful that so many wonderful friends and family were there to support her this year. Not only did we have one of the teams with the most members, but Team Emma Lee took the trophy for the most money raised by any team. We not only exceeded our Team goal of $3,000, we nearly tripled it with a final number of $8,743!

The entire WALK had over 500 people in attendance and raised over $54,000!!! When the goal was originally set for $18,000, it was amazing to see our group triple that goal as well. I would like to personally thank the other two Co-Chairs and volunteers - this event would not have been possible without all of them. We had an amazing group of people that really pulled together and got everything done despite the minimal setbacks we had on the morning of the WALK.

I'm already excited about the WALK next year. It will be nice to do this again after having one event under our belt. We learned so much and plan to have an even better event next year!

Hydrocephalus Awareness Month #HAM2014

This year, September is an even bigger deal for us than it was last year. A year ago, the goal was to try to raise awareness during Hydrocephalus Awareness Month (#HAM2014) and get the word out to our local community that this condition is more common than one might think. One way we did that was to have an article published in the Cross Timbers Gazette telling Emma's story. The article was a big step for both of us, and one in the right direction.

This year, now that I am also a Co-Chair of the inaugural DFW Hydrocephalus Association WALK happening on Saturday, September 27th, it is even more crucial that we reach as many people as possible. This year, we are not only raising awareness - we are also raising money to fund research to find a cure. Our goal when planning the event originally was to raise $18,000 and have 200+ walkers. As of today, we are already over both goals with a total amount raised exceeding $33,000 with just over two more weeks to go! If you're interested in donating, please click HERE.

When I started looking for ways to try to reach more people, I remembered the wonderful people at the Cross Timbers Gazette and contacted the man that wrote the original article on Emma last year. I asked if they would be interested in doing a follow up piece to help us and he was delighted to support us! The article from this year can be found here.

In keeping with #HAM2014, here are some facts about hydrocephalus put out by the Hydrocephalus Association (HA).

Just remember - any one at any point in their life can be diagnosed. Help us raise awareness and share!

DFW HA Community Network - dallas.ha.sg@gmail.com

DFW HA WALK - dfw.ha.walk@gmail.com

Dance as Though No One is Watching You

This summer, while Emma was attending Extended School Year (ESY), she started some private physical therapy (PT) to supplement the therapy she was getting at school. We started this because the therapy she would be getting at ESY was different than what she was getting during the school year in her Functional Life Skills (FLS) classroom, and I wanted to be sure that she continued to make strides in her progress if at all possible.

With her summer therapy ending this week, I had to share some of the things she did the last couple sessions that we caught on video. She is still getting stronger everyday, but now she is getting better at standing. Today, she even "fought" to stand up to keep watching some of her favorite Pixar short films. But my favorite was where she started to wiggle her booty to the beat of a Sesame Street song while standing. Granted, by the time I got my phone out to catch it, she had slowed down, but here is a little bit of it. I keep hoping the wiggle in her legs will turn into stopping, and then stepping!

Watching the video together after we got home, I started thinking. I loved seeing her dancing and expressing her joy through movement. I think it means so much to me because she has had to work so hard to overcome her developmental delays on her gross motor skills. It reminded me of one of my favorite quotes from an amazing lady.

"Dance as though no one is watching you,
Love as though you have never been hurt before,
Sing as though no one can hear you,
Live as though heaven is on earth."
- Audrey Hepburn

I know as she continues to work hard, getting closer to her first steps, I will continue to sing as many songs as many times as she wants, and dance as ridiculously as needed so she continues to feel the freedom to dance as though no one (but Mommy) is watching.

The Inaugural DFW Hydrocephalus Association WALK (9/27)

Do you know that more than 6,000 babies born this year will face a lifetime with the challenges from hydrocephalus?  And that hydrocephalus is number one reason for brain surgery among children?  That anyone, at any time, can be diagnosed with hydrocephalus?  At this time there is no prevention and there is no cure.

When Emma was diagnosed with hydrocephalus – an abnormal accumulation of cerebral spinal fluid (CSF) in the brain – at 20 weeks in utero, I was terrified!  I had no idea what hydrocephalus was and what sort of future my daughter faced.  Born weighing nearly 10.5 pounds, Emma’s life was very “touch and go” for the first month until she came home from the Neonatal Intensive Care Unit (NICU).  At a mere day and a half old, she underwent brain surgery to save her life – the placement of her shunt.  The shunt allowed the 1.5 pounds of excess CSF to drain out of her head.  Each day brought a new challenge on my tiny, fragile baby girl.  Although the doctors and nurses performed heroically during that time, I felt very alone.  We never would have made it without the love and support of family and friends …and the information and support we received from the Hydrocephalus Association (HA).

If you are unfamiliar with the organization, the stated mission of the Hydrocephalus Association is "To eliminate the challenges of hydrocephalus by stimulating innovative research and providing support, education and advocacy."  Currently, Emma is doing well – to date her shunt has worked so well that I occasionally have moments where I don’t worry.  But I never forget that currently, there is no cure.  While she hasn’t suffered any problems with her shunt yet – I know it is only a matter of time given more than 50% of shunts fail in two years.  The challenge now is to always stay alert to any change because the symptoms of shunt malfunction mimic the flu or other diseases – while the flu isn’t great it’s infinitely preferable to a shunt infection or shunt malfunction!  Unfortunately, life-threatening complications can develop in a heartbeat, keeping me extremely watchful for the tiniest change in her behavior.

While I continue to be grateful for the many doctors, nurses and therapists that have helped Emma, there still is no cure for hydrocephalus.  The shunt is at best a temporary treatment for life threatening condition that requires numerous unplanned brain surgeries to stay alive. Emma has had 3 hydrocephalus related surgeries so far – the same number of birthdays she has celebrated.  I also know that Emma is fortunate.  So many others with hydrocephalus that we have come to know, have dealt with so much more than she has (people younger than me having well over 100 surgeries).  With a little more research we may be able to change this.  That is why this year we are walking again to raise money and awareness for the Hydrocephalus Association; especially for those who have it worse than Emma, because there is no cure….and there should be.

In 2009, the Hydrocephalus Association launched a research initiative to learn more about this chronic and challenging condition.  Since then HA has committed over $3 million to research – making it the largest non-profit, non-governmental funder of hydrocephalus research in the U.S.  That is why Emma and I will again be participating in the HA WALK on September 27^th here in Frisco, TX.  Last year our team, Team Emma Lee, raised over $1,350 thanks to your support!  We were incredibly gratified by the generosity shown by our family and friends and very appreciative of your support.  Thank you so much.  Our goal for this year is $1,328 (the number of days old Emma will be on the day of the WALK) and we hope that you will, once again, support her team with a tax-deductible contribution.  Donations of any size are gratefully received.

For obvious reasons, I feel this is a very worthwhile cause.  Your donation will support critical research and program services so that my daughter, and more than one million other Americans living with the challenges of this complicated and complex condition, can lead a better life.

You can track our progress – and donate – online HERE – or go to www.hydroassoc.org, click on WALK, and choose the DFW WALK (Sept. 27) from the Schedule of WALKs.  Then “Support a Walker.”  It’s quick and easy!

Thank you for being a part of our lives!  Your support and love makes the difference.

Much love and gratitude,
Megan and Emma

P.S. Please feel free to e-mail or forward this to anyone!  The more people who know about hydrocephalus, the better!

Colors

While Emma has been learning her colors for some time now, she is just now getting to a point where it is a game to her to show me she knows them. She will request to do so by saying "colors" to me, and when we start playing, she will prompt me to ask her to find a color. I love how enthusiastic she is about showing me she knows them and how proud of herself she is when she does. You can tell that she is used to hearing people tell her she is doing a good job too because she tells me she is doing so when she locates a color I've asked for. 

Here's a short video of her playing in her ball pit while showing me she knows her colors from this past weekend. Can't help but smile.

Hydrocephalus Association Conference

While this post isn't really an update on Emma, it is important to know that a resource like this exists to support both Emma, me, and others in our journeys. This was my first year to attend the bi-annual conference put on by the Hydrocephalus Association. This year it was in Portland, Oregon, a place I had never had the pleasure of visiting before. Sadly, Emma did not go with me this year as the conference was during her first week of summer visitation with my ex. But, it was nice for me to take a vacation without Emma and have my first real "break" since she was born. I missed her terribly and worried a little at times, but I gained so much from going. I hope to take Emma with me to future conferences so she can also meet some of the wonderful people, including children also living with hydrocephalus. The age range was as far stretching as the challenges they lived with - from younger than her all the way up to those living with Normal Pressure Hydrocephalus (NPH) that were in their eighties. They split the kids up based on age and took them on field trips and watched them while the parents went to sessions to learn about the latest research and treatment improvements as well as how to plan for the future (school, transition, adulthood, independence, and finances). It will be a wonderful experience for Emma as she grows up to see she has peers she can relate to and lean on for support and encouragement when she wants it, as well as mentors to look up to and aspire to be like.

The conference started on Wednesday afternoon, but I arrived in town on Monday to have a little mini vacation prior to the event. I visited several beautiful places and, of course, the cheese factory in Tillamook. My camera is full of some wonderful memories. But that was only the beginning of the adventure. 

After an introductory keynote speaker, Wednesday afternoon was spent in small interpersonal break out groups based on your relationship to hydrocephalus. I was in the group of mothers with children age zero to four that had hydrocephalus. While we had several similarities to our stories, they were still all very different and a reminder that no case is the same. After exchanging contact info with everyone in that group at the end of the session, I needed some time to emotional decompress before getting dinner.

Thursday and Friday were packed full of sessions and there were so many to choose from that I had a hard time deciding at times. After the keynote, I attended the "ask the experts" session for parents of children with hydrocephalus ages zero to four. There was a pediatric neurosurgeon there that was answering any questions the parents wanted to ask for an hour and a half. I had been wanting to ask questions about the Endoscopic Third Ventriculostomy (ETV) surgery that is the other option for treating hydrocephalus. Instead of putting a shunt in to act as a drain, they create a hole to drain in the third ventricle that bypasses the blockage where Emma's problem is. While her type of blockage is one that is deemed a candidate for the ETV surgery, they don't typically do it in children at birth as the success rate is very low. But in children over two years old, the success rate is high enough that most will try it. That made me want to attend other sessions on this option. After talking to this neurosurgeon, I understood that there were risks for Emma that could make the attempt to try to live "shunt-free" fail. Another neurosurgeon explained it well in a different session - he said that when you open an expressway, the side streets aren't utilized as much and therefor the maintenance to keep them fully functional goes down. Same idea with a shunt. By putting in a shunt, the brain's ability to reabsorb the the cerebrospinal fluid (CSF) naturally diminishes. The ETV is rarely a good enough drain to accommodate the amount of fluid the shunt is capable of which requires the "side streets" to still be functional. In most cases, once they have been closed for over a year, they rarely reopen.

After lunch on Thursday, one of the sessions I attended was about endocrinology. Many children with hydrocephalus have issues with hormones and I wanted to learn more about what to watch for since her developmental pediatrician had mentioned it was something to be mindful of in the future. After that, I attended a session on Individualized Education Programs (IEPs) since Emma had started school this past February. While I went to college to be a middle school math teacher, I wanted to know what others had experienced coming from the opposite side of the table. What worked best, what they struggled with, and how they continued to advocate for their child.


Friday was a wonderful day as well. I attended sessions all day and ended with a conference dinner, dance, and talent show. I loved seeing all the children with hydrocephalus and their siblings do numbers together and couldn't help but think about how that could be Emma one day soon. At one point, I saw one of my WALK Chair mentors dancing by herself between some tables. When I asked her what she was doing, she told me about a touching story of how that song and dance was special to her because she used to do it with her parents before they passed. Naturally, I joined in because I was so touched by her story. It was a testament to the types of people that were there and how amazing they all were. I can not wait for the one in 2016!

Ribbit Ribbit Squeak Ribbit

Short and sweet - just had to share this. The frog toy was purchased for the dogs' Easter basket, but Emma found it first and for some reason it never made it. She loves to hand it to me and ask me to make it "ribbit ribbit" for her. Such a silly little munchkin!

"Upsee" Daisy!

Firefly Upsee

One of my friends heard about the Upsee and sent me a link knowing full well that it was right up our alley. I read the article and watched the video and immediately started looking for where I could buy this amazing product. Then I found out that it wasn't yet for sale - we would have to wait until April 7th to "click and buy."

The wait for the calendar to reach April felt longer than usual, but then last week I started to get really excited. I knew Emma would be getting her Upsee and that we would be walking together soon! Then the launch day came, and the Firefly servers went down. Since this was the first product of its kind and they were shipping worldwide, their servers were unable to handle the traffic and took some time before orders could be processed. After hours of periodically checking for their site to be up and running so I could complete the order, I finally had success! My order number was US10637 when all was said and done... a number that spoke volumes of how many other parents were out there trying to do the same for their kids.

After the order went through, I got an email a few days later explaining how they were doing their best to fill the orders, but that it could take up to twelve weeks before we would see our new Upsee. Again disappointed, I patiently waited because I knew that this was WELL worth the wait. 

Then, a week later, I got another email. This one gave me an estimation on when the Upsee would ship. It was to be dispatched on the week of May 26th. While this was within the original twelve week estimation, I was beginning to feel like a young child on Christmas Eve. I was struggling to keep my excitement in check and remain patient. The next month felt like a year, but then I got my email with shipping details - Emma's Upsee would be here on Friday, May 23rd!!! I couldn't believe it - just in time for Memorial Day Weekend. While Emma would be with my ex from Friday night until Sunday night for visitation, she was coming home for the holiday. This would be the perfect chance for us to try it out for the first time!

While Emma was gone, I practiced with the Upsee and got it all sized up for both of us. I knew when she got home on Sunday at 6PM that I would want to put her immediately in it and try it out. And that is exactly what we did! It was a little awkward the first time getting us all set up together, but we got it down. We walked up and down the main hallway of our house and around the front yard. There was a bunny in the yard and when she saw it, she started making kissing sounds at it. From that reaction, I knew she saw it and that she knew what it was. You see, she has a bin full of flash cars and corresponding items that she looks at daily (and has done so for well over a year now). In that bin, there is a rabbit stuffed animal and it loves to give her rabbit kisses. She used to push it away when it did, but she grew to like it.

Due to the time of day at that point, we had to go ahead and end our first Upsee day as it was time for her medicine, bath, and dinner. But I knew we would have all day on Memorial Day to practice walking together. I couldn't wait!

The next morning, we went to the Dallas World Aquarium. This was Emma's second time there, but the first time to stay awake for all of it. We took the Upsee with every intention of trying it out there, but with the rainy weather and all the people, we decided not to push her. So we enjoyed all the animals in the "jungle" as Emma kept calling it and stopped for lunch on our way home. After Emma had a nice nap, it was time to get Upsee Daisy!

While we are still working on our technique and stamina, she really seems to enjoy her new view of her world and curious about everything she sees. I love watching her discover things and I can't wait to see what she discovers next!

It's a JUNGLE Out There!

Today, Emma's class went on a field trip to Grapevine Mills Mall. This was Emma's first field trip, so I took off work so I could join in the fun. Since I was going, we just met everyone there instead of dropping her off at school to ride the bus over. It was so nice to finally officially meet some of her friends' parents. We all met up right outside the Rainforest Cafe and when we walked up to it, Emma said "jungle." I love how she is really starting to generalize and become more interested in her environment!

Once the bus arrived and her friends were inside, we took some pictures and started walking around. Emma was not in the mood to be in her stroller and wanted to touch so many things as we walked around. Instead, she ended up being passed around for almost every adult to take turns carrying her because she was leaning and reaching to see so many people. It was so exciting for me to see her so interested in meeting people she didn't know very well (the other parents)! It doesn't hurt that it also gave my arms a break from carrying around my adorable twenty-nine pound munchkin.

Looking at the sharks with her teacher.

Once we reached the food court, we stopped to ride on the carousel! This was the first time Emma had been on one, but I figured she might like the horse since she was enjoying her rides on Pooh Bear at SpiritHorse so much more now. She didn't seem comfortable on the horse and kept trying to get in my lap so we moved to a small carriage for the ride.

Sitting on the horse with Mommy.

Enjoying the ride!

Once the ride was over, it was snack time for all the kids. Emma had some yogurt and then we said goodbye to all her friends from school. While it would have been nice to stay and spend the entire day with all her friends, she was ready for nap time and I had to get to work. But we made some wonderful memories while it lasted!

The Things She Will Do for Pixar...

Admittedly, I am a very well trained parent when it comes to high dollar items with Emma... and she knows it! No matter if she is walking in her gait trainer, riding Pooh Bear, or drinking milk from her cup, Mommy will work for the big ticket items. She has learned that Mommy has all the Pixar short films on her phone and can walk next to Pooh Bear during hippotherapy, holding the phone so she can watch them. So today, she did what any other child who has a well trained parent, who is misbehaving, would do to get her parent back under control. She laid down on Pooh Bear every time we started to walk at the beginning of her ride. Her message was clear - it was time for Mommy to pay up.

I took her cue and pulled my phone out and started "For the Birds," which is one of her favorites. Finally, I got it right and she was finally ready to sit up like a big girl for her ride! Once that one ended, I did as I was supposed to, and pulled up the next one I could find as quickly as possible so as not to let her go too long without entertainment. The next one was "Knick Knack" which isn't one of her favorites, but she obliged since I was putting in the effort she had asked for. The next short film was "Lifted" and that one seemed to loose her interest as it was hard to see the dark screen in the sunshine. Since I was still going in alphabetical order, the next one was "Luxo Jr." and that one got her refocused because she loves the ball the little lamp plays with. Next came another favorite - "Partly Cloudy."

Once I started that film, I realized we had walked all the trails so much that I was starting to loose track of how far we had gone. I knew we were currently on her best ride to date, and that we had completely obliterated her previous record, but wasn't sure by how much as I didn't know the exact length of all of the movies. As the movie came to an end, Emma decided she was ready for a break and laid down. I looked back through at the movies we had played and added up the times and realized we were close to twenty minutes.

After she was ready to sit back up, we tried something new. We moved Emma's hands forward to a 2 point position and she willingly stayed there, holding up some of her weight through her arms! After that, we tried to get her to twist to reach around and touch Pooh Bear's rear. She again obliged, turning and touching him with both hands! Then we tried something even more difficult. We tried to get her to touch her hand to her opposite toes without laying down on Pooh Bear. She was close to touching her right hand to her left toes, but she DID touch her left hand to her right toes - without resting her head!!! At this point, we had only a couple minutes left for this therapy session, so we rode back and ended on a high note.

Yes, she is TOUCHING Pooh Bear - AND SMILING!

After we finished, I added up the times to get the final number - 20:06!!! I couldn't believe it - she more than DOUBLED her previous record! I had a little bit of a hard time not crying because I was so proud of her for working so hard, but I managed to keep it together. As soon as we were finished, I picked her up off of Pooh Bear and gave her the biggest hug. I am still on cloud nine hours afterwards and haven't stopped smiling. Once I got back to work, I had to share with everyone how well she did. And because I'm still so excited, I had to post this and share her accomplishments with her Hydro Family and Friends as well. Now to go post it up on a big billboard on the side of the freeway so I get to see it on my way to and from work every day! Good thing I have a coupon for paint...