Since her birthday, she has had a couple more birthday parties to add...such a fun time for our little one. She is getting so big, just the other day she got out of the car all by herself, and walked to meet her teacher. She's becoming more independent. She has started to read now. I purchased the BOB books and we are working our way through them. She even brings the books to hippotherapy and reads to her pony, Annie. She has decided to grow her hair out, long, like some of her friends and her sister, so mommy is growing mine too just for fun. She is growing too by the way...with her eating foods now, her calorie count is up and shows. Her weight this year was 35.8 lbs which was 22% and her height was an incredible 50% at 42 1/2 inches! Her pediatrician was amazed she has grown so well.
I cannot believe it is already May. These months seem to be moving fast since January. School will be out soon and a few days later we have scheduled her spinal surgery. She will be on restricted movement, so no horse back and no gymnastics for 6-8 weeks...this might turn out to be a very long summer for our little one. School will start the end of August this year and we are still waiting to hear where Anna will go. We also have some great vacations for her so hoping we can have some fun around the medical issues we will be facing.
I cannot believe it is already May. These months seem to be moving fast since January. School will be out soon and a few days later we have scheduled her spinal surgery. She will be on restricted movement, so no horse back and no gymnastics for 6-8 weeks...this might turn out to be a very long summer for our little one. School will start the end of August this year and we are still waiting to hear where Anna will go. We also have some great vacations for her so hoping we can have some fun around the medical issues we will be facing.
Chuck E Cheese
For the first time ever, we decided it would be awesome to bring Anna to Chuck E Cheese and invited her classmates as well. She was so excited! We were there right at the opening and had the place practically to ourselves. Her friends really enjoyed the two hours of fun with pizza and cupcakes too. Having it on a weekday was nice, and then after the party everyone went to school. We will be having her classroom party on her birthday and family pizza dinner on saturday. This girl is so lucky! Not everyone gets 4 parties for their birthday! (NY family surprised her with a party a couple weeks ago; previous page entitled She's growing up)
Our little girl is so very amazing in her ability to make others smile and just make someone's day. Her light that is undeniable can brighten any mood and her strength is beyond measure.
As in recent years I have been thinking of all the things my little girl has accomplished this past year and I will try to list them here. I will also try to update on what is going on in her medical world since that is always changing for her.
Things that brighten my day, her enthusiasm in everything she does..."mommy its morning" (with a kiss), "Mommy, I love you", "Can you snuggle me?", "Ants are so very tiny", My Little Ponies is her absolute favorite thing to sing, talk about, watch on TV and do right now...SO of course, we enjoy hearing about My Little Ponies 24/7
When she notices anything before I do it always amazes me as well as usually causes me to giggle..."good morning gooses (Geese)", "Hello Chuck" (Dog at the horse farm) "Its raining out so the flowers will grow." "It's snowing!!"
Myanna can or does...
write her own name
get dressed, puts on shoes, coat and hat
catch a ball
dribble a ball
allow ponytails, barrettes too in her hair
brush her hair
go to sleep alone, but joins me around midnight
get on her pony by herself, ride her pony backwards, turns her pony left and right, post when trotting
say sounds of letters
read small words (cat)
eat ice cream, spaghetti sauce, turkey lunch meat, frosty, whipped topping
walk the balance beam
do a backwards somersault
go to the dentist (no fluoride or x-rays yet)
brighten your day
make you laugh
eat salami
color more in the lines
cut out lines and shapes with scissors
ride her two wheeler with training wheels
put together small puzzles
As far as her new medical concerns, I will try to explain this as best I can. Anna was diagnosed with spina bifida occulta. She has what is called a fatty filum, which are fat deposits on her filum terminale at the base of her spinal cord. These fat deposits weigh down her filum and pull down her spinal cord making it less flexible. Eventually, though no one can give us a time frame, this can lead to tethering of her spinal cord. When this occurs, she will have less flexibility and pain usually results in the back and legs. Other symptoms can develop like tripping and falling, constipation, scoliosis and incontinence. The incontinence is a big concern because once those nerves are affected they are less likely to repair themselves which leaves the person incontinent for life. She only has minor symptoms at this time. She has constipation, urgency to use the restroom and marks on her shoe consistent with dragging of one foot.
Chris and I have been thinking about this for a while now and what we should do for the best outcome for Anna. She had another MRI done on our recent trip to Boston. The neurosurgeon and urologist both advised that spinal surgery in which they cut the spinal cord where the fat has begun would be the best course of action for Anna. There are no clear cut pictures of the tethering at this time, but her conus that should end at the L1 level is now at the L3 level, meaning that it is being pulled down and is called a low lying conus. She still has the syrinx in her spinal cord, but they feel it might have gotten smaller and is not an issue to her at this time.
As much as we don't want to do this surgery, and have our little one go through more trauma and pain...we think its our best choice for her future. I have no idea how we will keep her still for 48 hours post op, but its something we will have to do to avoid spinal fluid leakage. Please think of her and keep her in your prayers the end of June when we plan on making this journey.
As in recent years I have been thinking of all the things my little girl has accomplished this past year and I will try to list them here. I will also try to update on what is going on in her medical world since that is always changing for her.
Things that brighten my day, her enthusiasm in everything she does..."mommy its morning" (with a kiss), "Mommy, I love you", "Can you snuggle me?", "Ants are so very tiny", My Little Ponies is her absolute favorite thing to sing, talk about, watch on TV and do right now...SO of course, we enjoy hearing about My Little Ponies 24/7
When she notices anything before I do it always amazes me as well as usually causes me to giggle..."good morning gooses (Geese)", "Hello Chuck" (Dog at the horse farm) "Its raining out so the flowers will grow." "It's snowing!!"
Myanna can or does...
write her own name
get dressed, puts on shoes, coat and hat
catch a ball
dribble a ball
allow ponytails, barrettes too in her hair
brush her hair
go to sleep alone, but joins me around midnight
get on her pony by herself, ride her pony backwards, turns her pony left and right, post when trotting
say sounds of letters
read small words (cat)
eat ice cream, spaghetti sauce, turkey lunch meat, frosty, whipped topping
walk the balance beam
do a backwards somersault
go to the dentist (no fluoride or x-rays yet)
brighten your day
make you laugh
eat salami
color more in the lines
cut out lines and shapes with scissors
ride her two wheeler with training wheels
put together small puzzles
As far as her new medical concerns, I will try to explain this as best I can. Anna was diagnosed with spina bifida occulta. She has what is called a fatty filum, which are fat deposits on her filum terminale at the base of her spinal cord. These fat deposits weigh down her filum and pull down her spinal cord making it less flexible. Eventually, though no one can give us a time frame, this can lead to tethering of her spinal cord. When this occurs, she will have less flexibility and pain usually results in the back and legs. Other symptoms can develop like tripping and falling, constipation, scoliosis and incontinence. The incontinence is a big concern because once those nerves are affected they are less likely to repair themselves which leaves the person incontinent for life. She only has minor symptoms at this time. She has constipation, urgency to use the restroom and marks on her shoe consistent with dragging of one foot.
Chris and I have been thinking about this for a while now and what we should do for the best outcome for Anna. She had another MRI done on our recent trip to Boston. The neurosurgeon and urologist both advised that spinal surgery in which they cut the spinal cord where the fat has begun would be the best course of action for Anna. There are no clear cut pictures of the tethering at this time, but her conus that should end at the L1 level is now at the L3 level, meaning that it is being pulled down and is called a low lying conus. She still has the syrinx in her spinal cord, but they feel it might have gotten smaller and is not an issue to her at this time.
As much as we don't want to do this surgery, and have our little one go through more trauma and pain...we think its our best choice for her future. I have no idea how we will keep her still for 48 hours post op, but its something we will have to do to avoid spinal fluid leakage. Please think of her and keep her in your prayers the end of June when we plan on making this journey.