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!
Saturday, December 27, 2014
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!
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!
Sunday, November 23, 2014
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.
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.
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!"
Monday, October 13, 2014
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.
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.
Tuesday, September 30, 2014
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!
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.
Tuesday, September 9, 2014
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).
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
Thursday, September 4, 2014
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.
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,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.
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
Friday, August 1, 2014
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 27th 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!
Monday, July 21, 2014
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.
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.
Monday, July 14, 2014
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!
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!
Monday, June 23, 2014
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!
Monday, May 26, 2014
"Upsee" Daisy!
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| 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!
Tuesday, May 13, 2014
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.
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| Looking at the sharks with her teacher. |
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| Sitting on the horse with Mommy. |
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| Enjoying the ride! |
Wednesday, April 30, 2014
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.
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...
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.
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| Yes, she is TOUCHING Pooh Bear - AND SMILING! |
Thursday, April 17, 2014
One Person CAN Change the World
A friend tagged me in a post on Facebook of a picture that said something very simple, yet very profound. It was a perfect way of saying something that I've always felt and believed, even though I've heard the words that were crossed out many times. But, it made me start to think...
And in a conversation with a different friend later that same day, I started to think outside my bubble. After hearing the words from the doctor that my daughter had a condition called hydrocephalus, it changed not only our world, but took us both down a path that would change the lives of many others as well - most we hadn't even met at that point. I would become a sponge for information and seek out ways to meet others that could relate to what Emma and I were living with. The joys, the sorrows, the wins, the challenges, and possibly even provide guidance and support as we walked this journey together. So once I found the Hydrocephalus Association (HA) and asked about a local support group, the domino effect began.
If it wasn't for Emma, I never would have considered jumping so far outside of my shell to start and lead a support group. But being the Community Network Leader was just the beginning. We met so many wonderful people, all walking their own paths, each in a different place along that path - but a path that we all knew and could relate to. One family that we met at one of our meetings was very similar to ours. They had a young child that was diagnosed with hydrocephalus and were in search for the same things I was - knowledge, support, and friendship. In that meeting, we had one of the Co-Chairs from the Houston HA WALK there and she told us about the event. I loved the idea of the WALK and made sure Emma and I were a part of it. The other family took it a step further and inquired about starting a DFW WALK. As soon as they asked me to Co-Chair with them, I jumped at the opportunity with even less hesitation that I did at leading the support group.
Over the next few months, I got to know the family more and more as well as many others. I refer to them as our "Hydro Family" and really feel we are just that - a family. Even if much of our communication is done regularly through social media, I feel their support in our daily lives. Now each time I see Emma do something new, I want to share those accomplishments with them too. I am grateful for my daughter's nationwide network of friends that will cheer her on for every milestone she accomplishes, because I know how hard she works for each of them, and that she deserves all of it.
Now, I look at our life together and I see that Emma has changed my world. She inspired me to be a stronger person than I believed I could be, started a local support group, influenced others to start a local WALK, and created a local community that could not only support her family, but also her ever growing Hydro Family. She has touched so many lives by being an inspiration to me and everyone she meets.
I no longer believe that one person really can't change the world. My daughter may only be three years old, but she has taught me that I was wrong - because she already has.
Over the next few months, I got to know the family more and more as well as many others. I refer to them as our "Hydro Family" and really feel we are just that - a family. Even if much of our communication is done regularly through social media, I feel their support in our daily lives. Now each time I see Emma do something new, I want to share those accomplishments with them too. I am grateful for my daughter's nationwide network of friends that will cheer her on for every milestone she accomplishes, because I know how hard she works for each of them, and that she deserves all of it.
Now, I look at our life together and I see that Emma has changed my world. She inspired me to be a stronger person than I believed I could be, started a local support group, influenced others to start a local WALK, and created a local community that could not only support her family, but also her ever growing Hydro Family. She has touched so many lives by being an inspiration to me and everyone she meets.
I no longer believe that one person really can't change the world. My daughter may only be three years old, but she has taught me that I was wrong - because she already has.
Wednesday, March 12, 2014
Back in the Saddle Again!
Today, Emma started hippotherapy again at SpiritHorse. I was excited to see how well she would do given how much stronger she has been getting over the last few months. When we ended last session, her record was around 80 steps before getting tired and laying down. I was hopeful that she would do at least that well despite the months between rides. But when we arrived, her instructor brought out a different horse. Emma would have a new horse to get used to and become friends with. Her new horse is named Pooh Bear and is a 23 year old retired show pony with a gentle, loving nature who is willing to do anything asked of him.
After introductions were made and Pooh Bear was saddled and ready to go, Emma got back in the saddle again... but this time, she was sitting up with a confidence that seemed much stronger than previous times. She grabbed on with both hands and we were off! I started counting steps in anticipation of crossing her previous record, but I had no idea how far I would be counting! Sixty... Seventy... Eighty... A NEW RECORD... One hundred... Two hundred... THREE hundred... FOUR HUNDRED! She finally took her first break after completing 428 steps!!! It was at that point that I realized that she had graduated from counting steps to keeping time.
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| G--O |
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| LET'S GO!!! |
After a short break, Emma regrouped and we headed off again. Only this time, I was armed with a stop watch. I figured she was getting pretty tired, but she was able to make her second stint just as impressive at four minutes and three seconds! She has truly come a long way and I couldn't be more proud!!!
Monday, March 10, 2014
EARring-A-Ding-Ding
Today was a big day... for Emma's ears. They got new holes added to hold her pretty new sparkly earrings. This was something I've wanted to do for her since she was born, but I wanted to wait until her third birthday so she would be a little older and her ear lobes a little bigger. But, now that she has started school, spring break seemed like the perfect time to finally take the plunge (pardon the pun, I just can't help it sometimes).
We arrived at her pediatrician's office for her appointment, and I told her that while it may hurt, she would really like her new sparkles earrings. I was a little worried, since I was pretty sure this could be the first time Emma really cried. But I knew I would be there to kiss and hug her so she would feel better, even if she did shed a tear. While we waited for the Physician Assistant (PA) to come in and pierce her ears, Emma happily took a few "selfies" with my phone.
I'm sure she would have preferred to read a Dr. Seuss book, but she loves looking at herself in the front camera on my phone and I wanted to have the camera ready to capture the experience. When the PA arrived, armed and ready, it was time to measure... Twice. At this point, Emma got quiet and started to really analyze what this nice lady was here to see her for. Most of the time, the people she meets at doctors' offices are not THAT interested in her ear lobes.
Then came this white tool that went on her ear lobe. We were singing and clapping together (keeping her hands busy) while the lady drew dots on her ear lobes, but now I had to hold her still.
With a slight look of uncertainty, she jumped at the loud click sound the piercing gun made when it pushed the earring through her ear lobe.
After the surprise from the sound was gone, she noticed how her ear felt and... I cried.
Her face broke my heart and I did my best to comfort her. She stopped in a couple seconds and we started singing again. The PA asked if we were ready to go for the other ear or if she needed more time. I'm a firm believer in ripping a band-aid off in one fast jerk, so since she hadn't shed a tear and was back to singing, we proceeded. Emma, again, began to look cautiously at her as the PA got ready to pierce her other ear.
Again, I held her head to keep her from moving and kept her hands away from her ear. She didn't fight this time (she does not like to have her arms/legs restrained), and then the second loud click came. Startled again, she reacted again to the feeling in her ear and I cried a little more.
At this point, we both needed a big hug so I turned her around and picked her up. I was relieved that she had done so well, but it still hurt to see her upset. She didn't touch her ears or seem to have any issues the rest of the day, and even napped well.
We cleaned her ear lobes in her bath, and while I could tell they were a little tender, she let me wash them and turn her earrings without trying to stop me or keep me away from them.
After dinner, she got to read four Dr. Seuss books with Mommy before bed. Then, there was some snuggle time while watching a little bit of The Voice. After that, it was past her bed time and I put her down. And now it's time for Mommy to crawl into her bed.
Wednesday, February 26, 2014
Knee Brace
On February 21st of last year, Emma got her bilateral AFOs. She has made tremendous progress with them, but is now needing a little more support in a different area. When standing, Emma will lock and hyperextend her right knee and put most of her weight on that leg. So by the recommendation of her PT, Emma's pediatrician wrote her a new prescription and sent us back to Hanger to get measured and have a new brace made.
Emma had her appointment on January 7th to get her knee evaluated with the same gentleman that she saw almost a year ago for her AFOs. After some car based conversation sparked by my Skip Barber Racing School jacket, we talked about the concerns of how Emma was standing with regards to her right knee. He agreed that she needed some support, but felt (provided I agreed) that the knee should be treated as a separate issue from her ankles. I liked this as I told him I did not want her to have so much support that it could become a crutch. I also wanted her to be able to graduate out of each brace as she was able. If we did a brace for her ankle and knee together on her right leg, she would have to have two joints ready to graduate in order to stop use of it. Then we would also have the potential issue of having to have more braces made as she continued to grow taller and the brace was no longer the correct length.
So he took her measurements and told us that we would be called to come in once insurance had approved it and the brace was ready to be fitted. They called me on January 16th and collected the first half of payment so they could begin fabrication. When it was complete, they called me again on February 11th to have us come in for a fitting so she could start using it. The appointment was set for 2:30P on February 12th and I was excited to see what it would look like. When we got there, there was a quick lesson on the best practices of placing the brace on her knee. Then it was time to see how she handled standing with her new brace. Reluctant at first, she eventually stood and sang us a few songs. Soon we were on our way home!
So far, the brace is working well! Emma has adjusted well to it and doesn't pull on it or fight it. She is even getting more used to standing while wearing it, which is wonderful! Her teacher at school even tells me that she's doing well using it with her Physical Therapist (PT). I'm really getting curious how she will during hippotherapy when that starts back up next month!!!
Emma had her appointment on January 7th to get her knee evaluated with the same gentleman that she saw almost a year ago for her AFOs. After some car based conversation sparked by my Skip Barber Racing School jacket, we talked about the concerns of how Emma was standing with regards to her right knee. He agreed that she needed some support, but felt (provided I agreed) that the knee should be treated as a separate issue from her ankles. I liked this as I told him I did not want her to have so much support that it could become a crutch. I also wanted her to be able to graduate out of each brace as she was able. If we did a brace for her ankle and knee together on her right leg, she would have to have two joints ready to graduate in order to stop use of it. Then we would also have the potential issue of having to have more braces made as she continued to grow taller and the brace was no longer the correct length.
So he took her measurements and told us that we would be called to come in once insurance had approved it and the brace was ready to be fitted. They called me on January 16th and collected the first half of payment so they could begin fabrication. When it was complete, they called me again on February 11th to have us come in for a fitting so she could start using it. The appointment was set for 2:30P on February 12th and I was excited to see what it would look like. When we got there, there was a quick lesson on the best practices of placing the brace on her knee. Then it was time to see how she handled standing with her new brace. Reluctant at first, she eventually stood and sang us a few songs. Soon we were on our way home!
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| Not too sure about it yet, but we'll get there! (please disregard the crazy socks... I don't like plain ones) |
Over the next couple days, we followed the prescribed schedule of wear to allow Emma to get used to it and to make sure there weren't any fitting issues. On the second day, there was a scratch on the back of her upper thigh where the velcro was rubbing her. I called Hanger and asked for an appointment to have an adjustment made. We went back on February 18th at 2:30P and got a new wider strap added to it that was to be under the velcro that was scratching her. After a bit more car talk, we were off again.
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| The new strap is the dark blue part. |
Monday, February 10, 2014
First Day of SCHOOL!!!
Hard for me to believe that my little munchkin is old enough to start school, but given she just had her third birthday, it must be true. We had to say goodbye to all her Early Childhood Intervention (ECI) therapists last week as it was the last time she would see them for therapy. It was bittersweet, as are most times of change, but it was nice that she got to see most of them that day to say goodbye. I can't thank her therapists (the ones she said goodbye to last week and all the others that she has worked with in these last few years) enough for all the support and guidance they have provided while helping Emma and I be the best team we can be.
The process for starting school is definitely one to mention, as the team of people we worked with did a wonderful job with helping make it a smooth transition! Emma met with and completed assessments with a diagnostician, occupational therapist, physical therapist, speech therapist, orientation and mobility specialists, and her current Vision Impairment (VI) Teacher. I was able to tour two different campuses (one of which I attended personally) and see two different classroom options to decide which option would be the best placement for Emma. After much deliberation and several discussions with the diagnostician about the options, we decided the Functional Life Skills (FLS) classroom was the best choice for Emma. The student to teacher ratio was much better, as well as the equipment they had readily available for daily use while at school.
After the decision was made, Emma and I made a visit to her future classroom so she could meet the teachers and they could meet her. Her primary teacher asked if it would be possible to come by our house and get to know her even better in her own environment to start learning her likes and dislikes as well as what motivates her. Thrilled with the enthusiasm of her teacher, we gladly had her over. It was so nice to start to develop that bond you have with your child's teacher and have that sense of trust and respect before Emma even started attending school. It really made the idea of my little munchkin not being so little anymore much easier to swallow, even if I did choke back some tears when I dropped her off this morning for her first day of class.
And, as no surprise to me, Emma had a wonderful first day! Her teacher sent me pictures of her interacting with so many new toys and textures - some more enthusiastically than others of course. Elmo was there with her, but she also found something new that she was interested in - a slinky! She was assigned locker number seven, which I told the teachers was quite fitting, since that was both her birthday and mine. On Thursday, she'll have her new backpack to carry her notebook back and forth to school. She would have had one today, but I didn't think she'd be having homework so soon! (No homework, it's just a way for her teacher and I to communicate about how things are going. But I had to make the joke!)
The process for starting school is definitely one to mention, as the team of people we worked with did a wonderful job with helping make it a smooth transition! Emma met with and completed assessments with a diagnostician, occupational therapist, physical therapist, speech therapist, orientation and mobility specialists, and her current Vision Impairment (VI) Teacher. I was able to tour two different campuses (one of which I attended personally) and see two different classroom options to decide which option would be the best placement for Emma. After much deliberation and several discussions with the diagnostician about the options, we decided the Functional Life Skills (FLS) classroom was the best choice for Emma. The student to teacher ratio was much better, as well as the equipment they had readily available for daily use while at school.
After the decision was made, Emma and I made a visit to her future classroom so she could meet the teachers and they could meet her. Her primary teacher asked if it would be possible to come by our house and get to know her even better in her own environment to start learning her likes and dislikes as well as what motivates her. Thrilled with the enthusiasm of her teacher, we gladly had her over. It was so nice to start to develop that bond you have with your child's teacher and have that sense of trust and respect before Emma even started attending school. It really made the idea of my little munchkin not being so little anymore much easier to swallow, even if I did choke back some tears when I dropped her off this morning for her first day of class.
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| Playing with Elmo and her new teacher! |
Friday, January 31, 2014
She is growing "UP" so fast...
For Emma's third birthday, I had another one of my crazy ideas of how I could go a little overboard on her party to make it fun and special. I am aware that my sanity could easily be measured with a yard stick at times, but this birthday was a big one for Emma Lee and me.
Before I had my daughter, doctors had very few comforting things to say about the chances she would have. I was told of the high likelihood that she would struggle, if she survived the pregnancy at all, and that there was little chance for her to even live to see her third birthday. Almost all of the things the doctors told me that she would be unlikely be able to achieve, she has done. This birthday marked the last of those predictions she had left to prove the doctors wrong on - and she did just that with the grace of someone far more poignant than any toddler should be at such a young age. I look at her and see her smile light up that beautiful face, and can't help but be filled with pride and love.
So when it came to deciding what to do for her big birthday, I had the idea of doing an "Up" themed party based on the Pixar movie that I loved and she enjoyed as well. I started thinking about how I could line the ceiling with balloons and put clouds on the walls to make it look like the movie. I started searching for more ideas and found myself on Pinterest where there were hundreds of pins. A bit overwhelmed, I began to search Etsy - a place I love to shop for wonderful gifts and special items. I found a couple of items there, and then my creative juices began to flow with other ideas of what I could do. I started to make a list so that I wouldn't forget any of them. Then it was time to see about putting all the ideas together and getting to work to make them a reality.
Lucky for me, I have a few people willing to help make my ideas a reality. We cleaned up the house and decorated a little all week, but we pulled it off. That morning, we blew up 300 balloons and set everything up and got Emma dressed in her birthday outfit just in time (with less than a couple minutes before guests started to arrive). Everyone enjoyed snacks and punch while taking turns putting their colorful thumb print on Emma's birthday canvas. Once that was done and everyone had their own personal "Ellie" badge, it was time to open the presents.
Before I had my daughter, doctors had very few comforting things to say about the chances she would have. I was told of the high likelihood that she would struggle, if she survived the pregnancy at all, and that there was little chance for her to even live to see her third birthday. Almost all of the things the doctors told me that she would be unlikely be able to achieve, she has done. This birthday marked the last of those predictions she had left to prove the doctors wrong on - and she did just that with the grace of someone far more poignant than any toddler should be at such a young age. I look at her and see her smile light up that beautiful face, and can't help but be filled with pride and love.
So when it came to deciding what to do for her big birthday, I had the idea of doing an "Up" themed party based on the Pixar movie that I loved and she enjoyed as well. I started thinking about how I could line the ceiling with balloons and put clouds on the walls to make it look like the movie. I started searching for more ideas and found myself on Pinterest where there were hundreds of pins. A bit overwhelmed, I began to search Etsy - a place I love to shop for wonderful gifts and special items. I found a couple of items there, and then my creative juices began to flow with other ideas of what I could do. I started to make a list so that I wouldn't forget any of them. Then it was time to see about putting all the ideas together and getting to work to make them a reality.
Lucky for me, I have a few people willing to help make my ideas a reality. We cleaned up the house and decorated a little all week, but we pulled it off. That morning, we blew up 300 balloons and set everything up and got Emma dressed in her birthday outfit just in time (with less than a couple minutes before guests started to arrive). Everyone enjoyed snacks and punch while taking turns putting their colorful thumb print on Emma's birthday canvas. Once that was done and everyone had their own personal "Ellie" badge, it was time to open the presents.
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| Entry |
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| BALLOONS! |
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| Ellie Badges |
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| Birthday Girl |
Emma got lots of great presents and even wanted to see them when I unwrapped them for her. This is new for her as she has not always been so comfortable with new things. So we played with some tissue paper and some of the presents a little before it was time for dessert. In keeping with her "cupcake" theme from previous years, I opted to make different color frostings and make them into balloons. A few cotton balls for clouds, a blue table cloth, a print out of the house from the movie cut out, and a couple little characters, and the scene was set!
After the party, it was nap time... for both of us! Once everyone was rested up, or at least she was, it was off to Fair Park to see the Chinese Lantern Festival! She loved seeing the bright, beautiful lanterns - especially the ones that she recognized like the flower, the fish, and the bug.
Once we got home, half the balloons from her party that morning were on the floor and she wanted to play with them. So we started tossing the balloons on her and she would reach for them, grab one, and tell us what color it was. Then she would go after another and tell us what color it was. But after about fifteen minutes of balloon fun, it was time to go to bed. So we read one of her new books she got for her birthday, and one of her favorites as well. Then it was time to sleep.
I've just about got everything cleaned up now (although there are still clouds on the wall in the living room and banners lining the hallway), but I'm so happy it went so well. Even if my fingers still have blisters that are healing from tying balloons... I love making wonderful memories with my munchkin!
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