Today, Cara had an appointment with her neurologist. We made the appointment out of concern for her lack of speech, wanting to get another opinion to make sure we weren't missing something.
First off, I voiced my concerns about Cara's lack of progress in verbal communication and mentioned how she was capable of learning new signs.
Then, we talked about how she did verbally communicate (open vowel sounds) and what was being done in her therapy sessions. Her neurologist agreed that there didn't seem to be much progress in the 8 months that Cara has been receiving speech therapy.
Next, Cara was undressed as the neurologist looked over her body. I wasn't exactly sure what she was looking for beyond signs of hypotonia (which we know she has). Then, she pointed out some spots that Cara had on her skin.
Honestly, I never game them much attention, as I just thought that they were normal on bi-racial children. It turns out though, that they are called cafe-au-lait spots and can be an indicator of several things, one of which being neurofibromatosis, an incurable disease. Of course, it could be something else entirely, or it could be nothing but, Cara shows several signs of neurofibromatosis including developmental delays and pressure on nerves or other areas of organs (hydrocephalus).
Not wanting to be an alarmist, her neurologist has decided to take a two-fold approach to finding out what's going on--both with the spots and with Cara's delays.
1. We are to undergo genetic therapy at Children's Hospital to investigate the spots (there's a genetic malformation that is linked to neurofibromatosis) and possible causes for Cara's hydrocephalus and delays. This process is pretty intense and starts with a very complete family history and discussion with the geneticist. Usually, genetic mapping is done, as is some pretty extensive blood work. I have called and scheduled an appointment for the earliest available time. Would you believe that we have to wait until DECEMBER to be seen in the clinic?! The wait is going to be unbearable! We may try to find somewhere else to go, but I really trust the expertise of Children's, so we'll see.
2. Cara is to have another MRI to check for any increase in pressure or fluid in her brain as well as to check for any signs of malformation. She hasn't had one since July of 2007, so it's a good idea regardless. I am waiting for the order to be processed by the radiology department at Children's and then will call tomorrow to schedule the scan. This should be done in the next few weeks, so at least we'll be able to rule out anything "structurally" wrong relatively quickly.
I am trying to get a grip and stay positive, but darn it, it's not easy! The cards just keep staking up against our poor little girl. I just have to keep remembering...That which doesn't break us, makes us stronger! That said, Cara is already a strong little girl in mind, body & definitely spirit!
Rest assured, everyone, that I will be keeping you all posted as we continue the quest to answer the questions around Cara's delays.
Wednesday, August 27, 2008
Monday, August 25, 2008
Won't you please?
Dear Blog Readers,
Won't you please support our family in the Hydrocephalus Walk taking place in Highlands Ranch (suburb of Denver) on September 7th? Our entire family will be walking (well, Cara will be riding, in her stroller) the 2K event. We are really looking forward to the opportunity to help raise awareness and funds for the Hydrocephalus Association, which has been instrumental in helping me find other hydro families as well as providing information and resources during a time when we felt very alone. We would love it if you would consider reaching out and helping us in our fund raising efforts by pledging. Any amount, from $5 to $500 (I can dream) is very much appreciated and 100% tax deductible!
Please, click here to view our pledge page, read a little more about Cara's journey, and consider making a pledge. We'd really appreciate it!
With much love & thanks,
Laura, Ben & the girls.
**Everyone, if you've already received an email from me, please do not be offended. I am just trying to reach out to everyone and get as much support as possible**
Won't you please support our family in the Hydrocephalus Walk taking place in Highlands Ranch (suburb of Denver) on September 7th? Our entire family will be walking (well, Cara will be riding, in her stroller) the 2K event. We are really looking forward to the opportunity to help raise awareness and funds for the Hydrocephalus Association, which has been instrumental in helping me find other hydro families as well as providing information and resources during a time when we felt very alone. We would love it if you would consider reaching out and helping us in our fund raising efforts by pledging. Any amount, from $5 to $500 (I can dream) is very much appreciated and 100% tax deductible!
Please, click here to view our pledge page, read a little more about Cara's journey, and consider making a pledge. We'd really appreciate it!
With much love & thanks,
Laura, Ben & the girls.
**Everyone, if you've already received an email from me, please do not be offended. I am just trying to reach out to everyone and get as much support as possible**
Tuesday, August 19, 2008
It's Good Karma
There's good karma in the air around here today. No sooner had I posted about Cara's speech concerns did I receive a phone call from the neurology clinic at Children's Hospital. The neurologist who saw Cara before (one of two who saw her) has an opening NEXT Wednesday! Woo hoo! We just might get our answers sooner than we thought!
ONE YEAR!
On the heels of my rather somber post, I had to tell of a reason that we have to--CELEBRATE! Sunday marked a year since Cara's shunt surgery--a year with no malfunctions or complications resulting from having the shunt placed in her head. In fact, most days, I completely forget that she does, indeed, have a foreign object implanted in her cute little skull. Our daughter has changed so much, for the better, since August 17th of last year, we can't even begin to compare or comprehend. I just want to shout out my thanks to Cara's medical team at Children's Hospital for doing a fantastic job as well as keeping close tabs on her since her surgery. Here's to many more trouble-free years with Cara's Codman Programmable shunt! :)
Concern for Cara
As most of you know, Cara has yet to truly begin to speak. She has, at times, uttered "Momma" and imitated animals sounds (she loves the elephant) but, that is all that she has been able to master. We (Ben & I along with other family and friends and therapists) have been concerned for Cara's lack of speech.
Up until last month, she was receiving speech therapy weekly in our home. Her speech therapist is currently on maternity leave and we decided, for Cara's sake, not to have a replacement while she was gone for a month, since it would be confusing for Cara and might do more harm than good as she was so comfortable with Angela. So, I've just been working with her on the goals that were outlined before Angela's maternity leave. I am proud to report that Cara has mastered several new signs--thank you, daddy, mommy, sister and sleepy--and while we are thrilled with this progress, we were hoping for more audible progress in the way of words.
At this point in time, the only consistent sounds that she makes is an "Ahh" sound along with the "Mmmm" and sometimes "Mmmmommmma". There are times when she will make other consonant sounds but its few and far between. We were told, that speech is the last of the skills that kids learn with gross motor and fine motor falling in first and second, respectively, and that we just had to be patient. Well, Cara is walking quite well and has mastered quite a few fine motor tasks as of late. With all of this progress in other areas, you can't blame us for saying, "What about speech?!"
There is obviously, no cognitive issues that are hampering her speech. It is abundantly clear to us that Cara is smart and knows what she wants to say, but just cannot get her brain and her mouth/vocal cords to comply. This is called Apraxia according to the medical profession. Angela diagnosed Cara with this awhile ago but firmly believes that Cara will overcome this with patience and practice. While Cara shows the signs of beginning speech--turn taking, copying--that's where it stops cold in its tracks.
That being said, I have started to wonder if there's not something more going on than just a simple speech delay. I have called the neurology clinic at Children's Hospital and we are on the waiting list for an appointment, in hopes of getting in before October. I want to talk with a neurologist about possible brain damage or some such in the part of the brain (front left, I believe) that controls speech as well as the frontal lobe which controls creative expression. I am hoping that a scan will be ordered to check these areas as we haven't had any type of scan done since post-op on Cara's shunt almost a year ago. Even if the scan shows nothing out of the ordinary, I will rest assured that we have done everything that we can to find a reason for Cara's lack of speech.
It may just be that we are going to have to be even more patient that we already have been...who knows. All that I can say, in my defense, is that it is extremely frustrating at times to decode the needs of my toddler from a never-ending stream of "Ahhhh"s. Don't get me wrong, she has ways of letting us know what she wants, but oh, to hear her say, "I'm hungry!" or something like that, would be music to these ears!
So, the search for answers has just begun for us. I promise to keep you all posted as we hope to learn more in the coming months.
Up until last month, she was receiving speech therapy weekly in our home. Her speech therapist is currently on maternity leave and we decided, for Cara's sake, not to have a replacement while she was gone for a month, since it would be confusing for Cara and might do more harm than good as she was so comfortable with Angela. So, I've just been working with her on the goals that were outlined before Angela's maternity leave. I am proud to report that Cara has mastered several new signs--thank you, daddy, mommy, sister and sleepy--and while we are thrilled with this progress, we were hoping for more audible progress in the way of words.
At this point in time, the only consistent sounds that she makes is an "Ahh" sound along with the "Mmmm" and sometimes "Mmmmommmma". There are times when she will make other consonant sounds but its few and far between. We were told, that speech is the last of the skills that kids learn with gross motor and fine motor falling in first and second, respectively, and that we just had to be patient. Well, Cara is walking quite well and has mastered quite a few fine motor tasks as of late. With all of this progress in other areas, you can't blame us for saying, "What about speech?!"
There is obviously, no cognitive issues that are hampering her speech. It is abundantly clear to us that Cara is smart and knows what she wants to say, but just cannot get her brain and her mouth/vocal cords to comply. This is called Apraxia according to the medical profession. Angela diagnosed Cara with this awhile ago but firmly believes that Cara will overcome this with patience and practice. While Cara shows the signs of beginning speech--turn taking, copying--that's where it stops cold in its tracks.
That being said, I have started to wonder if there's not something more going on than just a simple speech delay. I have called the neurology clinic at Children's Hospital and we are on the waiting list for an appointment, in hopes of getting in before October. I want to talk with a neurologist about possible brain damage or some such in the part of the brain (front left, I believe) that controls speech as well as the frontal lobe which controls creative expression. I am hoping that a scan will be ordered to check these areas as we haven't had any type of scan done since post-op on Cara's shunt almost a year ago. Even if the scan shows nothing out of the ordinary, I will rest assured that we have done everything that we can to find a reason for Cara's lack of speech.
It may just be that we are going to have to be even more patient that we already have been...who knows. All that I can say, in my defense, is that it is extremely frustrating at times to decode the needs of my toddler from a never-ending stream of "Ahhhh"s. Don't get me wrong, she has ways of letting us know what she wants, but oh, to hear her say, "I'm hungry!" or something like that, would be music to these ears!
So, the search for answers has just begun for us. I promise to keep you all posted as we hope to learn more in the coming months.
Monday, August 18, 2008
Just One Word
This is the ONE WORD Meme. It's a bit harder than it looks. Thanks Judy, for some blog material.
1. Where is your cell phone? purse
2. Signifigant other? Ben
3. Worst bad habit? biting
4. Hair? Long
5. Favorite food? Carbs
6. Your favorite thing? Books
7. Your dream last night? None
8. Favorite drink? lemonade
9. Dream/goal? Masters
10. Room you are in? Living
11. Your ex? no-mustbeyours
12. Your fear? Disease
13. Where do you want to be in six years? Accomplished
14. Where were you last night? Bed
15. What you're not? Thin
16. Muffins? Struessel
17. Wish list item? Wardrobe
18. Where did you grow up? Michigan
19. Last thing you do? Pray
20. What are you wearing? Clothes
21. Your TV? OLD!
22. Your pets? None
23. Your computer? MacBook
24. Your life? Satisfactory
25. Your mood? Motivated
26. Missing someone? Grandparents (dead)
27. Your car? Outback
28. Something you are not wearing? Shoes
29. Favorite store? Target
30. Your summer? Short
31. Love someone? Duh!
32. Last time you laughed? Earlier
33. Last time you cried? Yesterday
1. Where is your cell phone? purse
2. Signifigant other? Ben
3. Worst bad habit? biting
4. Hair? Long
5. Favorite food? Carbs
6. Your favorite thing? Books
7. Your dream last night? None
8. Favorite drink? lemonade
9. Dream/goal? Masters
10. Room you are in? Living
11. Your ex? no-mustbeyours
12. Your fear? Disease
13. Where do you want to be in six years? Accomplished
14. Where were you last night? Bed
15. What you're not? Thin
16. Muffins? Struessel
17. Wish list item? Wardrobe
18. Where did you grow up? Michigan
19. Last thing you do? Pray
20. What are you wearing? Clothes
21. Your TV? OLD!
22. Your pets? None
23. Your computer? MacBook
24. Your life? Satisfactory
25. Your mood? Motivated
26. Missing someone? Grandparents (dead)
27. Your car? Outback
28. Something you are not wearing? Shoes
29. Favorite store? Target
30. Your summer? Short
31. Love someone? Duh!
32. Last time you laughed? Earlier
33. Last time you cried? Yesterday
Friday, August 08, 2008
Olympic Pride 8-8-08
I posted these questions to a group that I co-moderate, but thought it would be fun to answer them here.
It's OLYMPIC TIME!
1. Are you going to watch the Opening Ceremony of the Olympics? Why or why not? We sure are. I grew up watching both the summer and winter games and want to instill in Caitlin the same national pride that has fostered in me over the years. There's something special about seeing our country's best compete.
2, What events to you like to watch? I love gymnastics but every Olympics, I find another sport that hold my interest too. For the Winter Games, I love figure skating.
3. If you could be in an Olympic event, which would it be and why? Either cycling or figure skating. Cycling because I've always enjoyed biking. I think I would do better on a tour than an actual race though. Figure skating because it's so graceful and I love how the skaters make the music come alive. One of my favorite movies of all time in Cutting Edge--enough said?
4. What event would you like to see in the Olympics (you can even get creative and make one up)? Hopscotch or jump-roping. Back in the day, I was really good at jump rope!
5. Where should the Olympics be held next time? Why this locale? I think it's time for another Canadian Olympics, it's been awhile. I think it would be neat to have it in one of the eastern maritime provinces like Newfoundland or Prince Edward Island, but it's probably too remote.
Any of my blogging buddies care to answer these questions on their own blog? If so, let me know that you did and I'll be sure to stop by & read!
It's OLYMPIC TIME!
1. Are you going to watch the Opening Ceremony of the Olympics? Why or why not? We sure are. I grew up watching both the summer and winter games and want to instill in Caitlin the same national pride that has fostered in me over the years. There's something special about seeing our country's best compete.
2, What events to you like to watch? I love gymnastics but every Olympics, I find another sport that hold my interest too. For the Winter Games, I love figure skating.
3. If you could be in an Olympic event, which would it be and why? Either cycling or figure skating. Cycling because I've always enjoyed biking. I think I would do better on a tour than an actual race though. Figure skating because it's so graceful and I love how the skaters make the music come alive. One of my favorite movies of all time in Cutting Edge--enough said?
4. What event would you like to see in the Olympics (you can even get creative and make one up)? Hopscotch or jump-roping. Back in the day, I was really good at jump rope!
5. Where should the Olympics be held next time? Why this locale? I think it's time for another Canadian Olympics, it's been awhile. I think it would be neat to have it in one of the eastern maritime provinces like Newfoundland or Prince Edward Island, but it's probably too remote.
Any of my blogging buddies care to answer these questions on their own blog? If so, let me know that you did and I'll be sure to stop by & read!
Wednesday, August 06, 2008
School Daze
**How can she possibly be old even for school?! Wasn't I just feeding her bottles and mashed carrots?**
Caitlin started 1/2 day afternoon Kindergarten on Tuesday!
She is going to a public charter school that emphasizes multiculturalism and bilingual education. She is in the Spanish program since we figured that would be the most beneficial for living where we do. The school also offers Mandarin and French. The first 90 minutes of class are in English and the rest of the time instruction is given in Spanish. It's a very demanding curriculum (so we've heard) which is what we wanted for Caitlin, we wanted her to be challenged. Her class is also small, only 12 students which allows the teacher to provide some one-on-one attention as needed.
Anyway, Ben took the day off on Tuesday so that he could be there to send Caitlin off. She showed almost no fear when we got to her classroom and started to play with the puzzles and other interactive games on the teacher's bookcase. Caitlin made friends with one little girl during the open house and they stuck together like glue when we arrived. I think it was harder on us to leave her than it was for her. She gave each of us a hug and quickly resumed her playing.
We took some pictures at the school as well as at home after she was all decked out in her uniform and back pack. Oh my goodness, did she ever looks so grown up! When we got back to the car, knowing that she was happy & safe at school, Ben and I both had ourselves a cry. Our baby has grown up.
We were early to pick up Caitlin in the afternoon (we were told 3pm but school is released at 3:30pm) so we sat on the grass in front of the school and waited for Caitlin's class to be led out by her teacher. Caitlin was first in line and as soon as she saw Ben, she made a beeline for him--completely ignoring her teacher's instruction to stay in line. As hard as it was for him not to pick her up and give her a big hug, Ben made her get back in line until her teacher released the class. Then, she came running again! She had a big smile on her face and reported that she had a great time at school and that she listened to her teacher (except for that one time). Her class had art that day and Caitlin drew a very cute picture. She did tell us that she was starving because we didn't pack her a snack (we didn't know if they had snack time--oops!) and we promised that she could have a snack at home.
At home, I grilled her on what she had learned in school and she began signing a song in Spanish that asks someone how they are doing. I was very impressed for the first day of school! I hope that she will continue to grow and thrive in this school. She certainly seems to like it so far.
No homework yet, but we are expecting 10 minutes a night on top of reading 15 minutes per night. Since she is not in full day like we were hoping, I am also going to supplement her studies with some workbook, just to make sure that she is on par.
With school came a new routine of earlier bedtimes, early lunch and school drop off and pick up. So far, we are managing and adapting quite well, but it does seem like we're on the go a lot.
Caitlin started 1/2 day afternoon Kindergarten on Tuesday!
She is going to a public charter school that emphasizes multiculturalism and bilingual education. She is in the Spanish program since we figured that would be the most beneficial for living where we do. The school also offers Mandarin and French. The first 90 minutes of class are in English and the rest of the time instruction is given in Spanish. It's a very demanding curriculum (so we've heard) which is what we wanted for Caitlin, we wanted her to be challenged. Her class is also small, only 12 students which allows the teacher to provide some one-on-one attention as needed.
Anyway, Ben took the day off on Tuesday so that he could be there to send Caitlin off. She showed almost no fear when we got to her classroom and started to play with the puzzles and other interactive games on the teacher's bookcase. Caitlin made friends with one little girl during the open house and they stuck together like glue when we arrived. I think it was harder on us to leave her than it was for her. She gave each of us a hug and quickly resumed her playing.
We took some pictures at the school as well as at home after she was all decked out in her uniform and back pack. Oh my goodness, did she ever looks so grown up! When we got back to the car, knowing that she was happy & safe at school, Ben and I both had ourselves a cry. Our baby has grown up.
We were early to pick up Caitlin in the afternoon (we were told 3pm but school is released at 3:30pm) so we sat on the grass in front of the school and waited for Caitlin's class to be led out by her teacher. Caitlin was first in line and as soon as she saw Ben, she made a beeline for him--completely ignoring her teacher's instruction to stay in line. As hard as it was for him not to pick her up and give her a big hug, Ben made her get back in line until her teacher released the class. Then, she came running again! She had a big smile on her face and reported that she had a great time at school and that she listened to her teacher (except for that one time). Her class had art that day and Caitlin drew a very cute picture. She did tell us that she was starving because we didn't pack her a snack (we didn't know if they had snack time--oops!) and we promised that she could have a snack at home.
At home, I grilled her on what she had learned in school and she began signing a song in Spanish that asks someone how they are doing. I was very impressed for the first day of school! I hope that she will continue to grow and thrive in this school. She certainly seems to like it so far.
No homework yet, but we are expecting 10 minutes a night on top of reading 15 minutes per night. Since she is not in full day like we were hoping, I am also going to supplement her studies with some workbook, just to make sure that she is on par.
With school came a new routine of earlier bedtimes, early lunch and school drop off and pick up. So far, we are managing and adapting quite well, but it does seem like we're on the go a lot.
Saturday, August 02, 2008
Happy 5th Birthday Caitie!
Caitlin,
Mommy has really struggled with writing this post because well, she couldn't figure out how to sum up all that has happened in your world this year. But, she thinks that she's finally gathered her thoughts.
It seems, that in a blink of an eye, you have grown from a little girl to a very grown up girl indeed. You may only be 5 years old but in a lot of ways, you seem to be 15! You have wisdom and sensitivity beyond your years--your knowledge and vocabulary always amaze your family and strangers alike. We constantly find ourselves wondering how in the world you know some of things that you do or where you heard such of an "adult" word. I guess, you are just so very interactive with your world and are one big sponge.
We love how strong willed and independent you are. While, at times, we butt heads, we hope that these are traits that you never lose or let fade into the background. We want you to always speak your mind and stand up for what you believe in. The world needs more girls like you! We love how you can make your own choices and solve some of your own problems.
This past year, we have watched you literally transform before our eyes. You have lost a lot of your "baby look" and have matured into a young lady. Thank goodness, you still have your cute cheeks and contagious smile. You are definitely showing your uniqueness in the outfits that you wear, the pictures that you draw and the stories that you make up and the things that you pretend to be.
This has been a year of learning for you too. You have learned how to write your entire first and last name; how to draw very realistic pictures; play Uno, Candy Land, Shutes & Ladders and other games--by the rules; do a cartwheel and plenty more that we are forgetting. You have memorized Bible versus; played on a soccer team; learned a dance; mastered I Spy on the computer; overcome your fear of sleeping in your bed and had overnights with Grandma & Grandpa.
Best of all, you are a joy! You really are a sweet girl; a very loving and understanding big sister and a great friend. We are proud of you and hope that you know that. As you get ready to start Kindergarten, we know that you are going to love it and make so many new friends. Mommy & Daddy cannot wait to hear all about your days and help you with projects and homework.
Carry on Caitlin! It's going to be so much fun!
Happy Birthday Sweetheart!
Love always,
Mommy & Daddy
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