Luke and Meghan have been having fun writing back and forth to their pen pals. Two of their pen pals are from Texas and another is from Louisiana! This has been great for Luke to be involved in!
Mighty Meghan
Monday, October 21, 2013
Meggers has been working really hard for the past couple of months on one of her therapy goals...taking steps down stairs. In order for her to complete this goal, she needs to walk down an entire flight of steps on her own for 3 consecutive home visits from her therapists. While walking down an entire flight of stairs is still hard for her to do, what she CAN do is walk down the last step on our stairs - unassisted - like a PRO!!!!! She is SO proud that she can do this all on her own! This goal is dedicated to Meghan's runner, Jenn, through the group I Run 4 Michael. Here's a little video:
We finally got results on the blood work from the Endocrinologist appointment. Everything came back normal, except for her IGF-1 which is a growth hormone study. Normal range for Meghan's age is between 54-144. Meghan's came back at 19. So.....we MIGHT have an explanation as to her lack of growth and energy, which would possibly be that Meghan has a growth hormone deficiency. The Endo is concerned with the low IGF result and wants to recheck in 3-4 months. If the IGF number is still low at the re-check, she would like to do more testing. Sometimes I wonder how much testing can be done on a little body. Seem's like she's had every test ran on her already! Meghan has an appointment with the Geneticist in 2 weeks so we will bring this up to her at that appointment and hopefully she will provide more insight on this to us. Fingers crossed.
Luke and Meghan have been having fun writing back and forth to their pen pals. Two of their pen pals are from Texas and another is from Louisiana! This has been great for Luke to be involved in!
Luke and Meghan have been having fun writing back and forth to their pen pals. Two of their pen pals are from Texas and another is from Louisiana! This has been great for Luke to be involved in!
Thursday, October 10, 2013
On Monday, we celebrated Meghan's shunt being 18 months old! It's hard to believe it's been 18 months since her shunt was placed. Although we have had a couple scares of a shunt failure along the way (which always turned out to be nothing), we are so thankful Meghan's shunt has not malfunctioned. Hope it stays that way for a LONG time!!
A couple days ago was Meghan's long awaited Endocrinologist appointment regarding her growth and energy. To say the least, I was not impressed at all. Based on a calculation per the computer, Meghan will reach a final height of 5'2 - give or take a couple inches either way. Okay, thanks, computer, but I won't rely on you for the height she will reach - I'll let her body decide that on it's own. Basically, what we walked away with is the endo's recommendation of: let her be the guide and let her eat when she wants. Keep the meal times, but if she's hungry in between meals let her eat! If she opens up the cupboard and wants to eat - let her. Well, gee, what a great idea!!!! But for anyone who truly knows Meghan, knows she will literally eat ALL day long if you let her. If she had her way, she'd camp out in the food pantry because she knows food is in there! But how is "just let her eat whenever" going to help our HUGE issue of Meghan freaking out anytime she see's food, or knows food is available? It's like her body doesn't get the signal that her tummy is full. She also said to give her a snack before bed. That's fine...I'm okay with that. Other than the genius suggestion to let her eat all day, more blood work was done which includes:
metabolic panel - checks kidney function, blood sugar level, blood acid/base balance and electrolytes.
ESR - useful in detecting inflammation in the body that may be caused by infection, some cancers, and certain autoimmune diseases.
IGF-1 - is a hormone and plays an important part in childhood growth.
IGFBP-3 - used to check for pituitary gland disorders and abnormalities in growth hormone production.
T4 and TSH - checking for thyroid issues
She is also being checked for Celiac disease.
Meghan's weight. August 26th she weighed 21.14 pounds. Last week she was 20.4. Yesterday she was 19.10. According to the endo, that is perfectly normal and in her words: Meghan isn't wasting away. Wow, thanks for the concern. As a mom, her weight concerns me. I do not feel it's "normal" to lose weight especially with the amount of food she intakes daily. It's hard watching the daycare kids her age and younger run all over the place and be full of energy - and then there's my little girl who *most of the time* prefers to lay low and has a hard time keeping up with her friends. As far as Meghan's energy - she has no idea why her energy level is low. Again, thanks for the concern. I've met many great doctors over the past 18 months who are willing to listen and dig deep for answers. I've also met some not so great doctors who make you feel like you're wasting their precious time and rush through the appointment unwilling to really listen and look at the big picture. This doctor almost tops the not so great list. But, I will continue to fight for answers as that is the least I can do for my little girl.
So, we'll wait for the blood tests to come back and if the tests are all okay, we will go back up in 6 months. Why??? I have no idea. Thanks, but I think we'll pass and find someone who cares.
A couple days ago was Meghan's long awaited Endocrinologist appointment regarding her growth and energy. To say the least, I was not impressed at all. Based on a calculation per the computer, Meghan will reach a final height of 5'2 - give or take a couple inches either way. Okay, thanks, computer, but I won't rely on you for the height she will reach - I'll let her body decide that on it's own. Basically, what we walked away with is the endo's recommendation of: let her be the guide and let her eat when she wants. Keep the meal times, but if she's hungry in between meals let her eat! If she opens up the cupboard and wants to eat - let her. Well, gee, what a great idea!!!! But for anyone who truly knows Meghan, knows she will literally eat ALL day long if you let her. If she had her way, she'd camp out in the food pantry because she knows food is in there! But how is "just let her eat whenever" going to help our HUGE issue of Meghan freaking out anytime she see's food, or knows food is available? It's like her body doesn't get the signal that her tummy is full. She also said to give her a snack before bed. That's fine...I'm okay with that. Other than the genius suggestion to let her eat all day, more blood work was done which includes:
metabolic panel - checks kidney function, blood sugar level, blood acid/base balance and electrolytes.
ESR - useful in detecting inflammation in the body that may be caused by infection, some cancers, and certain autoimmune diseases.
IGF-1 - is a hormone and plays an important part in childhood growth.
IGFBP-3 - used to check for pituitary gland disorders and abnormalities in growth hormone production.
T4 and TSH - checking for thyroid issues
She is also being checked for Celiac disease.
Meghan's weight. August 26th she weighed 21.14 pounds. Last week she was 20.4. Yesterday she was 19.10. According to the endo, that is perfectly normal and in her words: Meghan isn't wasting away. Wow, thanks for the concern. As a mom, her weight concerns me. I do not feel it's "normal" to lose weight especially with the amount of food she intakes daily. It's hard watching the daycare kids her age and younger run all over the place and be full of energy - and then there's my little girl who *most of the time* prefers to lay low and has a hard time keeping up with her friends. As far as Meghan's energy - she has no idea why her energy level is low. Again, thanks for the concern. I've met many great doctors over the past 18 months who are willing to listen and dig deep for answers. I've also met some not so great doctors who make you feel like you're wasting their precious time and rush through the appointment unwilling to really listen and look at the big picture. This doctor almost tops the not so great list. But, I will continue to fight for answers as that is the least I can do for my little girl.
So, we'll wait for the blood tests to come back and if the tests are all okay, we will go back up in 6 months. Why??? I have no idea. Thanks, but I think we'll pass and find someone who cares.
Wednesday, October 2, 2013
There are so many awesome things happening lately!
I am SO excited about this!! Meghan was signed up with a group called I Run for Michael. This group matches runners with special needs children or adults. Each special needs child or adult is matched with a runner and they both keep up to date with each other on what is going on and often times, the runner dedicates their races, workouts etc. to the child/adult they are matched with. Meghan was recently matched and we are so excited to get to know Meghan's match and cheer her on and shower her with our support! Her name is Jennifer and she is absolutely amazing! She did her first run for Meghan already! I highly recommend any runners to join this group - or - any families with a special needs child or adult. This is the most inspirational group I have ever been involved with and we are so honored to have Jennifer be a part of our life!! Here is a picture from Jennifer after her first run for Meghan :) Jennifer is the BEST!
Another exciting thing is that both Meghan and Lucas have pen pals. You know, the old fashioned pen pal system where people send and receive letters via the postal service :) Luke especially looks forward to checking the mail box for letters and he loves writing to his pen pal!
Meghans PT/OT therapists have been working her hard! Our next therapy goal that Meghan is working on is taking steps downstairs on her own. Meghan has been working very hard at this for a while. She still needs someone to hold on to her hand while she takes steps down stairs, but she is getting stronger and stronger each time she goes down the steps. Going down the stairs is much easier on her than going up. Going up will take time to master. Meghan has decided that since her running buddy is running for her that she wants to dedicate her next goal (stairs) to Jennifer! This goal is all for you Jenn :) Speech is going well, too! She was given about 20 more signs to learn...whew! She picks up on new signs very quickly but we will introduce a new sign every few days or so. Within the last week, she's learned apple and sticker. Her therapist had to search in high places for the sign for sticker. Meghan is a HUGE sticker lover! We are working with her on putting together 2-3 signs at a time.
Meghan had her 6 month orthopedic check-up bright and early this morning. We left the house when it was still dark out...ish! That is way too early for this momma! Meg had x-rays of her lower extremeties. For the x-ray, she stood on a 1 cm lift with her left foot (shorter leg). The ortho said she has excellent hip alignment while standing on the lift so it's definitely a good thing she wears a lift in her shoe as it will benefit her hip and spine (to prevent scoliosis). We compared today's x-ray to the x-ray she had 6 months ago without the lift and you could clearly see her hip was uneven without her standing on the lift. We looked at her bones on her right foot - which is the foot where her 2nd and 3rd toes are fused together. She does have bones in all 5 toes, so if she would ever chose to have her toes separated (which I hope she chooses not to) it could be done since all bones are present, but it would require skin grafting. We are just so in love with her little fused toes. We have decided we will leave the decision to Meghan on whether to leave her toes fused or to release the toes (when she is old enough to make that big of a decision) but I have a feeling she will love her toes just the way they are, too! We no longer need to see the ortho every 6 months and we have graduated to yearly visits. The ortho said that at our next appointment, we will meet with an Orthopedic surgeon. Not to discuss surgery at this point, but to just talk to us about the procedure if needed down the road. This would be to stop her longer leg from growing so her shorter leg can catch up. This surgery is not done until the leg length difference is atleast 2cm...right now Meghan is between 1/2 and 1 cm difference. She also pointed out to us while looking at the x-ray that Meghan's shunt tubing in her stomach was on the left side of her stomach last time and today it is on the right side. This is absolutely no big deal, but was just kind of neat to see how the tubing floats around. Unfortunately, Meghan did lose a little weight and is at 20.4 pounds :( Yes, I will count every little ounce because she needs every little ounce she has - especially with the harsh winter months quickly approaching. We're just hoping for an easier winter for her this year!
I am SO excited about this!! Meghan was signed up with a group called I Run for Michael. This group matches runners with special needs children or adults. Each special needs child or adult is matched with a runner and they both keep up to date with each other on what is going on and often times, the runner dedicates their races, workouts etc. to the child/adult they are matched with. Meghan was recently matched and we are so excited to get to know Meghan's match and cheer her on and shower her with our support! Her name is Jennifer and she is absolutely amazing! She did her first run for Meghan already! I highly recommend any runners to join this group - or - any families with a special needs child or adult. This is the most inspirational group I have ever been involved with and we are so honored to have Jennifer be a part of our life!! Here is a picture from Jennifer after her first run for Meghan :) Jennifer is the BEST!
Another exciting thing is that both Meghan and Lucas have pen pals. You know, the old fashioned pen pal system where people send and receive letters via the postal service :) Luke especially looks forward to checking the mail box for letters and he loves writing to his pen pal!
Meghans PT/OT therapists have been working her hard! Our next therapy goal that Meghan is working on is taking steps downstairs on her own. Meghan has been working very hard at this for a while. She still needs someone to hold on to her hand while she takes steps down stairs, but she is getting stronger and stronger each time she goes down the steps. Going down the stairs is much easier on her than going up. Going up will take time to master. Meghan has decided that since her running buddy is running for her that she wants to dedicate her next goal (stairs) to Jennifer! This goal is all for you Jenn :) Speech is going well, too! She was given about 20 more signs to learn...whew! She picks up on new signs very quickly but we will introduce a new sign every few days or so. Within the last week, she's learned apple and sticker. Her therapist had to search in high places for the sign for sticker. Meghan is a HUGE sticker lover! We are working with her on putting together 2-3 signs at a time.
Meghan had her 6 month orthopedic check-up bright and early this morning. We left the house when it was still dark out...ish! That is way too early for this momma! Meg had x-rays of her lower extremeties. For the x-ray, she stood on a 1 cm lift with her left foot (shorter leg). The ortho said she has excellent hip alignment while standing on the lift so it's definitely a good thing she wears a lift in her shoe as it will benefit her hip and spine (to prevent scoliosis). We compared today's x-ray to the x-ray she had 6 months ago without the lift and you could clearly see her hip was uneven without her standing on the lift. We looked at her bones on her right foot - which is the foot where her 2nd and 3rd toes are fused together. She does have bones in all 5 toes, so if she would ever chose to have her toes separated (which I hope she chooses not to) it could be done since all bones are present, but it would require skin grafting. We are just so in love with her little fused toes. We have decided we will leave the decision to Meghan on whether to leave her toes fused or to release the toes (when she is old enough to make that big of a decision) but I have a feeling she will love her toes just the way they are, too! We no longer need to see the ortho every 6 months and we have graduated to yearly visits. The ortho said that at our next appointment, we will meet with an Orthopedic surgeon. Not to discuss surgery at this point, but to just talk to us about the procedure if needed down the road. This would be to stop her longer leg from growing so her shorter leg can catch up. This surgery is not done until the leg length difference is atleast 2cm...right now Meghan is between 1/2 and 1 cm difference. She also pointed out to us while looking at the x-ray that Meghan's shunt tubing in her stomach was on the left side of her stomach last time and today it is on the right side. This is absolutely no big deal, but was just kind of neat to see how the tubing floats around. Unfortunately, Meghan did lose a little weight and is at 20.4 pounds :( Yes, I will count every little ounce because she needs every little ounce she has - especially with the harsh winter months quickly approaching. We're just hoping for an easier winter for her this year!
Subscribe to:
Posts (Atom)