It's been a while since I've updated, but like the saying goes...no news is good news :)
There hasn't been too much going on lately. We are on a little break from doctor appointments until January. This break has been wonderful! We still don't have any news on the genetic test. Meghan is being tested for Russell Silver Syndrome which is a form of dwarfism. I had no idea, but there are over 200 different types of dwarfism! However, the geneticist doesn't feel this is something Meghan has, and to be honest, neither do I. But, it is part of the process of elimination. In January, Meghan has her dermatology and eye doctor appointments. Then, sometime in January or February, will be her ultra sound, AFP test, rapid MRI, neuro appointment, and Endocrinology appointment.
Meghan had her last therapy session for 2013 last Wednesday. She is now done with therapy until January 16th. She continues to work very hard on all of her goals. She has MASTERED simple sorting (i.e. sorting cows vs. pigs)!!! She also recently mastered identifying all items she was asked to identify from her therapists!! This is a great indication that she is very receptive cognitively (she understands what is being told to her), which we already knew! Her therapists check her receptive skills every couple of months to make sure there is no regression, which can sometimes happen with kids with neurological conditions. She is working so very hard on expressive language (saying words). She has added 2 new words to her vocabulary - yeah and ice. I know I am a little biased, but she has the sweetest sounding "yeah." She continues to expand her sign language. Some goals she is still working on: running, jumping, going down an entire flight of stairs unassisted (and going back up), dressing and undressing, using a fork to stab food, climbing onto furniture, standing on one foot. I love her therapists as they understand Meghan responds best to praise (and lots of it). This gets Meghan's determination going while working on a goal. We are so proud of Meghan with every accomplishment and every time she works on a goal. She's very determined and she will one day master every single goal!
Mighty Meghan
Monday, December 23, 2013
Sunday, November 24, 2013
Meghan has been a busy girl wanting to do everything all by herself lately! She missed last week of therapy as she wasn't feeling well. She has this week off due to the holiday. She has learned lots of new signs including cheese, cracker, cereal, apple, cookie (her favorite new sign lol), kitty, shoe, ball, hot, cold. She is trying so hard to get words out. We are seeing small progress in language, but we'll take every little bit of progress that we can get! Her favorite thing to do lately is talk on the phone!
We are still waiting on the results of the genetic tests from a few weeks ago, but we did get the Geneticist's dictation from our appointment, or as I refer to it - the what they never tell you report. The dictation states that the Geneticist has a very high concern for Meghan to have an underlying genetic condition and she highly suspects a mosaic difference in which there are two genetically distinct cell lines in her body, one of which contains a genetic abnormality. This is where the skin biopsy will come in to try to make a diagnosis, however, it is possible that the mosaicism is secondary to a single gene change, in which case, identifying an underlying diagnosis would be more difficult. She suspects that Meghan's rash is related to her underlying diagnosis. Because of the possibility that Meghan could have a neurocutaneous mosaic syndrome, she wants Meghan to see a pediatric ophthalmologist. This is scheduled for January 15th and will be a 2 hour appointment. God help us that day! Neurocutaneous syndrome is a broad term for a group of neurologic (brain, spine, and peripheral nerve) disorders. These diseases are life-long conditions that can cause tumors to grow inside the brain, spinal cord, organs, skin, and skeletal bones. Just to clarify...underlying genetic diagnosis simply means the genetic condition hasn't been identified yet. It doesn't particularly mean it's a rare genetic condition; although depending on if a genetic abnormality is found, it could end up being a rare condition. All of this genetic testing takes a lot of time - sometimes years - to get answers. I wish I understood mosaicism more, but it's way too scientific for me to even try to comprehend. It would make sense if Meghan has 2 different cell lines as all of her conditions (except neurological and spine conditions) are on the right side of her body - fused toes, body rash, leg length difference, girth difference (hemihypertrophy), Hydronephrosis. She even has an epicanthal fold (skin of the upper eyelid that covers the inner corner of the eye. The fold runs from nose to the inner side of the eyebrow) on her right eye, but not her left. Strangely, the right half of her hair is different than the left side as well, but is only noticeable when wet.
Jeff left a couple days ago to go on a hunting trip with some of his friends. I think Meghan was trying to stop her Dad from leaving :)
Meghan's runner ran her first race since being matched with Meghan! She did awesome and placed 40th out of 117 runners! We are so proud of her!!! Meghan got a special package in the mail recently from Jenn. The package included a Mighty Meghan cape, a book of Dora stickers, Old Bay seasoning along with suggestions on what to use the seasoning on and a yummy recipe, a package of delicious cookies made locally from where Jenn lives, the race medal and bib from their first race together and a Raven's window cling for Luke. I think it's pretty awesome that she sent Meghan her very own medal and bib!! We have the bib, medal and cape displayed in a special place in Meghan's room. Meghan loves wearing the cape and medal!! Jenn will be running another race in a few days so we are busy making her sign.
We are still waiting on the results of the genetic tests from a few weeks ago, but we did get the Geneticist's dictation from our appointment, or as I refer to it - the what they never tell you report. The dictation states that the Geneticist has a very high concern for Meghan to have an underlying genetic condition and she highly suspects a mosaic difference in which there are two genetically distinct cell lines in her body, one of which contains a genetic abnormality. This is where the skin biopsy will come in to try to make a diagnosis, however, it is possible that the mosaicism is secondary to a single gene change, in which case, identifying an underlying diagnosis would be more difficult. She suspects that Meghan's rash is related to her underlying diagnosis. Because of the possibility that Meghan could have a neurocutaneous mosaic syndrome, she wants Meghan to see a pediatric ophthalmologist. This is scheduled for January 15th and will be a 2 hour appointment. God help us that day! Neurocutaneous syndrome is a broad term for a group of neurologic (brain, spine, and peripheral nerve) disorders. These diseases are life-long conditions that can cause tumors to grow inside the brain, spinal cord, organs, skin, and skeletal bones. Just to clarify...underlying genetic diagnosis simply means the genetic condition hasn't been identified yet. It doesn't particularly mean it's a rare genetic condition; although depending on if a genetic abnormality is found, it could end up being a rare condition. All of this genetic testing takes a lot of time - sometimes years - to get answers. I wish I understood mosaicism more, but it's way too scientific for me to even try to comprehend. It would make sense if Meghan has 2 different cell lines as all of her conditions (except neurological and spine conditions) are on the right side of her body - fused toes, body rash, leg length difference, girth difference (hemihypertrophy), Hydronephrosis. She even has an epicanthal fold (skin of the upper eyelid that covers the inner corner of the eye. The fold runs from nose to the inner side of the eyebrow) on her right eye, but not her left. Strangely, the right half of her hair is different than the left side as well, but is only noticeable when wet.
Jeff left a couple days ago to go on a hunting trip with some of his friends. I think Meghan was trying to stop her Dad from leaving :)
Meghan's runner ran her first race since being matched with Meghan! She did awesome and placed 40th out of 117 runners! We are so proud of her!!! Meghan got a special package in the mail recently from Jenn. The package included a Mighty Meghan cape, a book of Dora stickers, Old Bay seasoning along with suggestions on what to use the seasoning on and a yummy recipe, a package of delicious cookies made locally from where Jenn lives, the race medal and bib from their first race together and a Raven's window cling for Luke. I think it's pretty awesome that she sent Meghan her very own medal and bib!! We have the bib, medal and cape displayed in a special place in Meghan's room. Meghan loves wearing the cape and medal!! Jenn will be running another race in a few days so we are busy making her sign.
A little motivation we sent Jenn the night before her first race as Meghan's buddy :)
Look closely...Jenn's shoe laces say I RUN FOR MEGHAN
Opening her special package from Jenn
Showing off all of her goodies!! Thanks Jenn!
Meghan wearing her Mighty Meghan cape hand made from Jenn...this girl is talented!!!
Hard to tell from her expression but she was telling quite the story while looking at her medal!
Thursday, November 21, 2013
Tuesday, November 19, 2013
Monday, November 18, 2013
Sunday, November 17, 2013
Friday, November 15, 2013
Day of Thanks #15: Today I am thankful for a good check up with Meghan's neurosurgeon!! Meghan did excellent today (even though she isn't feeling the best).
Today, Meghan had her 6 month neuro check up. This was basically just a developmental check. There was no imaging done today. He would like to have Meghan come back in 3 months for a rapid brain MRI with no sedation to check the size of her ventricles. The last 2 MRI's, Meghan has had smaller ventricles. While it's good to have ventricles smaller in size and not enlarged ventricles, it isn't the best scenario to have too small of ventricles. When the ventricles get too small, usually due to too much fluid drainage over time, they become like slits (aka slit ventricle syndrome). If her ventricles are small after the next MRI, he will probably slow down the drainage rate on her shunt, which would enable her ventricles to grow in size slightly. Again, we don't want the ventricles to get too large, so we will go back 3 months later for a sedated brain and spine MRI. He will look at the syrinxes on her spine, Chiari and ventricle size at that time. We will also arrange to have the skin biopsy done at this time as well. There is no reason to have a shunt series anytime soon (x-rays of shunt system from brain to stomach) as she doesn't show signs of shunt failure or malfunction and she has hardly grown so he doesn't need to look at the tubing in her stomach. Otherwise, he was happy to see that Meghan is doing great. It was pretty cool watching Meghan interact with him. Meg's weight today was 20.7 pounds (fully clothed) and 30 inches...no change. Meghan has taken her turn at the cold that is going around and she even decided to share it with mom :)
Today, Meghan had her 6 month neuro check up. This was basically just a developmental check. There was no imaging done today. He would like to have Meghan come back in 3 months for a rapid brain MRI with no sedation to check the size of her ventricles. The last 2 MRI's, Meghan has had smaller ventricles. While it's good to have ventricles smaller in size and not enlarged ventricles, it isn't the best scenario to have too small of ventricles. When the ventricles get too small, usually due to too much fluid drainage over time, they become like slits (aka slit ventricle syndrome). If her ventricles are small after the next MRI, he will probably slow down the drainage rate on her shunt, which would enable her ventricles to grow in size slightly. Again, we don't want the ventricles to get too large, so we will go back 3 months later for a sedated brain and spine MRI. He will look at the syrinxes on her spine, Chiari and ventricle size at that time. We will also arrange to have the skin biopsy done at this time as well. There is no reason to have a shunt series anytime soon (x-rays of shunt system from brain to stomach) as she doesn't show signs of shunt failure or malfunction and she has hardly grown so he doesn't need to look at the tubing in her stomach. Otherwise, he was happy to see that Meghan is doing great. It was pretty cool watching Meghan interact with him. Meg's weight today was 20.7 pounds (fully clothed) and 30 inches...no change. Meghan has taken her turn at the cold that is going around and she even decided to share it with mom :)
Thursday, November 14, 2013
Wednesday, November 13, 2013
Day of Thanks #13: I am thankful for all of Meghan's therapists! They are absolutely super with Meghan and are very knowledgeable. Many times, they have helped answer my questions more than some of the doctors can! You can tell that their job is a huge passion of theirs and not just a job. I am also very thankful in hearing Meghan adding some new words to her vocabulary!
Tuesday, November 12, 2013
Monday, November 11, 2013
Saturday, November 9, 2013
Day of Thanks #9: I am thankful for being a part of the I Run 4 group. I debated about signing Meghan up for a couple of months. Then, a friend talked me into signing Meghan up one day and I didn't think twice about it. I just had a feeling that whoever Meghan would be matched with, we would have a unique bond and form an amazing friendship. This group is almost 9,000 members strong and it is FULL of compassion, inspiration, and bonds that are like no other. I could literally spend my entire day on this group page reading post after post. I am truly thankful for Meghan's buddy, Jenn. This girl has a heart of gold and is a genuinely caring, kind hearted person. I've never met her, but I feel like I've known her for years. I hope one day we can introduce Meghan and Jenn to each other face to face. Now that would be amazing!!
Friday, November 8, 2013
Thursday, November 7, 2013
Day of Thanks #7: I am thankful for our 4 legged baby...Molly! She is the best dog. She's super with the kids and will let them climb over her, tug at her and pick at her. She's very protective of the kids. As much as I complain about her massive amount of shedding, I wouldn't trade her for the world :)
Wednesday, November 6, 2013
Tuesday, November 5, 2013
Day of Thanks #5: I am thankful for my job, which allows me to stay home with my kids but still bring in income. I believe everything happens for a reason and when I started daycare almost 7 years ago, I wasn't sure why I quit my job that I loved to do daycare, but it's so clear to me now. There's no way I could ever put Meghan in daycare. I love all of my daycare kids as if they're my own and I love being able to watch them all grow from babies to cute little kiddos who are so eager to learn!
Yesterday, was Meghan's 6 month check up with the Geneticist. She also had her 3 month ultra sound. Luke didn't have school, so he got to come along with us to the appointments. He wasn't too happy about it, but once we were there, he was fine with it and he even held her hand while she had the ultra sound and blood draws. He just doesn't like to hear her cry.
Here's what we found out:
1. Her low IGF-1 is a good indicator that Meghan does have a growth hormone deficiency. BUT, she said the funny thing with growth hormone is that it can fluctuate throughout the day and that is why the Endocrinologist wants to recheck in 3 months. She did say Meghan's number is quite low, so probably a good chance it will be low again. But, we won't speculate until it's re-checked and then we'll go from there.
2. Meghan developed a rash on the right side of her body around 6 months of age. Of course, every doctor we have talked to about the rash said it will eventually go away. Well, it hasn't, it just keeps spreading even with the use of multiple different lotions and creams. She brought in a 2nd geneticist to look at the rash and they both agreed Meghan would be a good candidate for a skin biopsy because of this mysterious rash. We have already had a blood test to look at her chromosomes. Meghan's came back normal, except a duplication on her X chromosome. With the biopsy, it will allow them to get down even further to look at the cells. She suspects Meghan has some sort of mosaic thing going on and could possibly even have 2 separate sets of chromosomes - one set on each side of her body. The reason for this suspicion is because Meghan's rash doesn't cross over the midline of her body at all. It stays completely on her right side...all the way from her head to her feet. She will have 2 pieces of her skin taken for biopsies and this will be done in May while she will be sedated for her MRI.
3. She referred Meghan to a pediatric opthmologist to have her vision checked due to her brain conditions and possible mosaic issue. She also wants Meghan to see a dermatologist. Both of these appointments will be done in the next 3 months.
4. They did some blood draws yesterday to check into a couple more conditions. It could be a couple weeks before we get those results.
We're waiting to hear results from the ultra sound and to check fluid level in the right kidney. Our next appointment is next Friday with the Neurosurgeon. I'm looking forward to that appointment because there will be no x-rays, MRI's or blood draws. Just a neuro check, developmental evaluation and to check her shunt....YAY!!!!
Here's what we found out:
1. Her low IGF-1 is a good indicator that Meghan does have a growth hormone deficiency. BUT, she said the funny thing with growth hormone is that it can fluctuate throughout the day and that is why the Endocrinologist wants to recheck in 3 months. She did say Meghan's number is quite low, so probably a good chance it will be low again. But, we won't speculate until it's re-checked and then we'll go from there.
2. Meghan developed a rash on the right side of her body around 6 months of age. Of course, every doctor we have talked to about the rash said it will eventually go away. Well, it hasn't, it just keeps spreading even with the use of multiple different lotions and creams. She brought in a 2nd geneticist to look at the rash and they both agreed Meghan would be a good candidate for a skin biopsy because of this mysterious rash. We have already had a blood test to look at her chromosomes. Meghan's came back normal, except a duplication on her X chromosome. With the biopsy, it will allow them to get down even further to look at the cells. She suspects Meghan has some sort of mosaic thing going on and could possibly even have 2 separate sets of chromosomes - one set on each side of her body. The reason for this suspicion is because Meghan's rash doesn't cross over the midline of her body at all. It stays completely on her right side...all the way from her head to her feet. She will have 2 pieces of her skin taken for biopsies and this will be done in May while she will be sedated for her MRI.
3. She referred Meghan to a pediatric opthmologist to have her vision checked due to her brain conditions and possible mosaic issue. She also wants Meghan to see a dermatologist. Both of these appointments will be done in the next 3 months.
4. They did some blood draws yesterday to check into a couple more conditions. It could be a couple weeks before we get those results.
We're waiting to hear results from the ultra sound and to check fluid level in the right kidney. Our next appointment is next Friday with the Neurosurgeon. I'm looking forward to that appointment because there will be no x-rays, MRI's or blood draws. Just a neuro check, developmental evaluation and to check her shunt....YAY!!!!
I am a little behind, so I'm doing a little updating!
How cool is this?!?!?!
This was done by Meghan's running buddy, Jennifer and her husband. I haven't been so moved by a simple gesture in a long time. There are no words to describe how touched we were when we saw that this amazing family did this for Meghan. It definitely is the simple things in life that mean the most! We think it's pretty awesome that their little boys shared their pumpkin for this, too!!!
This year for Halloween, Meghan dressed up as a lady bug. A couple nights before Halloween, I had her try on her costume. Meghan has some sensory issues, so some touches/textures/noises put her into sensory overload and she shuts down. I knew her costume would take time for her to get used to. I put her costume on her and immediately the tears rolled down her cheeks and she gave me the sign for "all done" about 1,000 times in a 10 second time span. She wanted it off....now! The day of Halloween, we had a Halloween party with the daycare kids. After naptime, all the kids dressed up in their costumes. I got all of the other kids dressed in their costumes first and then I sat them all down and talked to them about how Meghan didn't like how her costume felt on her. I asked them to talk very gentle and quiet to Meghan but to praise her when I was getting Meghan's costume on her. They thought that was pretty cool. I wasn't sure if it would work, but I know Meghan responds best to quiet, calm and most definitely - lots of praise. Thankfully, it worked! The first half hour of her costume on, she'd sign "all done" but we all kept telling her she looks so beautiful, and eventually she was fine with her costume on her.
Here's a picture of Meghan with one of her therapists. This was on Halloween and she was bowling using ghosts as targets. She had such a fun time with this! The reason for this activity is to strengthen her wrists. Her wrists are very weak and this is a great exercise to strengthen the muscles and also work the rotation so she learns to do a circular rotation with her wrists, which she does not yet do.
How cool is this?!?!?!
This was done by Meghan's running buddy, Jennifer and her husband. I haven't been so moved by a simple gesture in a long time. There are no words to describe how touched we were when we saw that this amazing family did this for Meghan. It definitely is the simple things in life that mean the most! We think it's pretty awesome that their little boys shared their pumpkin for this, too!!!
This year for Halloween, Meghan dressed up as a lady bug. A couple nights before Halloween, I had her try on her costume. Meghan has some sensory issues, so some touches/textures/noises put her into sensory overload and she shuts down. I knew her costume would take time for her to get used to. I put her costume on her and immediately the tears rolled down her cheeks and she gave me the sign for "all done" about 1,000 times in a 10 second time span. She wanted it off....now! The day of Halloween, we had a Halloween party with the daycare kids. After naptime, all the kids dressed up in their costumes. I got all of the other kids dressed in their costumes first and then I sat them all down and talked to them about how Meghan didn't like how her costume felt on her. I asked them to talk very gentle and quiet to Meghan but to praise her when I was getting Meghan's costume on her. They thought that was pretty cool. I wasn't sure if it would work, but I know Meghan responds best to quiet, calm and most definitely - lots of praise. Thankfully, it worked! The first half hour of her costume on, she'd sign "all done" but we all kept telling her she looks so beautiful, and eventually she was fine with her costume on her.
Here's a picture of Meghan with one of her therapists. This was on Halloween and she was bowling using ghosts as targets. She had such a fun time with this! The reason for this activity is to strengthen her wrists. Her wrists are very weak and this is a great exercise to strengthen the muscles and also work the rotation so she learns to do a circular rotation with her wrists, which she does not yet do.
Monday, November 4, 2013
Sunday, November 3, 2013
Day of Thanks #3: I am very thankful for my awesome fiancé Jeff. He is an amazing dad to his kids and is willing to do anything for anyone at any time of the day. He doesn't bat an eye when I ask for his help. He has been by my side through the good and bad. As I type this, he was paged for a fire call. I am also thankful for his time that he dedicates as a firefighter. He puts his heart and soul into being a firefighter and I'm always thankful when I see his car pull into the driveway after a call, as I know the good lord above watched over him and brought him home safely to his family. I am also thankful for Jeff's son, Colin, who also has a heart of gold. He has such a fun, energetic personality who is able to put a smile on anyone's face. We all know when Colin is around we'll get up to date on the sports statistics. We are blessed!!
Saturday, November 2, 2013
Since Thanksgiving is this month, I thought it'd be fun to write about one thing every day that I'm thankful for. Hopefully I can stick to this. I am a day behind, so I will do 2 days of thanks today.
Day 1: I am thankful for my beautiful, loving children. They bring me so much joy, even during the darkest of times. All I have to do is look at them and I'm reminded how precious life is and to live each day as if it's our last. I am honored that I was chosen to be their mom! I love you to the moon and back Lucas and Meghan!!!
Day 2: I am thankful for two very important doctors...Dr. Ferenci and Dr. Petronio. Each of these doctors saved my little girl's life. If it wasn't for Dr. Ferenci (GI doc), Meghan probably wouldn't be with us today. He, out of 4 other doctors, was the only doctor who listened to our concerns with Meghan and took us seriously. If he didn't order Meghan's brain MRI, I hate to think of what life would be like now. Dr. Petronio (Meghan's neurosurgeon) gave Meghan a new, fresh start at life by placing Meghan's VP shunt. He gave my little girl the life she deserved and most importantly, she is now a HAPPY and smily little girl. Both of these doctors restored my faith and trust in doctors.
Day 1: I am thankful for my beautiful, loving children. They bring me so much joy, even during the darkest of times. All I have to do is look at them and I'm reminded how precious life is and to live each day as if it's our last. I am honored that I was chosen to be their mom! I love you to the moon and back Lucas and Meghan!!!
Day 2: I am thankful for two very important doctors...Dr. Ferenci and Dr. Petronio. Each of these doctors saved my little girl's life. If it wasn't for Dr. Ferenci (GI doc), Meghan probably wouldn't be with us today. He, out of 4 other doctors, was the only doctor who listened to our concerns with Meghan and took us seriously. If he didn't order Meghan's brain MRI, I hate to think of what life would be like now. Dr. Petronio (Meghan's neurosurgeon) gave Meghan a new, fresh start at life by placing Meghan's VP shunt. He gave my little girl the life she deserved and most importantly, she is now a HAPPY and smily little girl. Both of these doctors restored my faith and trust in doctors.
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!
Saturday, September 21, 2013
The majority of this blog focuses on Meghan. But a huge part of Meghan's life is her older brother, Lucas. This post is all about him!!
Eight years ago at 9:18am, God gave me a beautiful gift...my first child, Lucas. Luke was delivered via emergency C-section after 50 hours of labor...yes, 50 hours. It was a long 50 hours of many ups and downs. It was around the 24 hour mark of labor that I asked for a c-section because I felt I just didn't have it in me anymore. The nurses talked me into holding off on a C-section and to get rest. Ummm...yeah right! But...like the trooper that I am (LOL), I listened and knew I really didn't want to go the C-section route if I really didn't have to. Time went on and Luke decided he wanted out...now! Too quickly though. As labor intensified, Luke wasn't reacting well and we started losing his heart beat. My quiet labor room that consisted of myself, Luke's dad, and a labor nurse turned very quickly into a room full of about 10 nurses and a few doctors. I will not go into details on how they got Luke's heart beat again, but I will say they finally got him to react and got a heart beat again and I was rushed immediately into surgery. From the time I was taken out of my room for surgery until the time of Luke's birth is very blurry. But I remember very clearly seeing my beautiful bundle of joy right after his delivery. He weighed 8 pounds 7.5 ounces and was 21 1/4 inches long...just absolutely perfect!
Fast forward 8 years and I am very proud of the person Luke is turning into! He wanted to be a big brother very badly and when he finally became a big brother, I saw a very nurturing, loving side to him that I had never seen before. Of course, I also saw the side to him where he couldn't go without an hour of picking on his little sister, but, I guess that's what big brothers do! Many, many times Luke has had to take the backseat to his sister's health, but through it all, he's always the first one to be concerned and ask how his sister is doing. He always wants to know she is okay.
To my little fisherman, farmer, baseball player and overall goofball...have a very HAPPY 8TH BIRTHDAY!! Enjoy your special day!!
Eight years ago at 9:18am, God gave me a beautiful gift...my first child, Lucas. Luke was delivered via emergency C-section after 50 hours of labor...yes, 50 hours. It was a long 50 hours of many ups and downs. It was around the 24 hour mark of labor that I asked for a c-section because I felt I just didn't have it in me anymore. The nurses talked me into holding off on a C-section and to get rest. Ummm...yeah right! But...like the trooper that I am (LOL), I listened and knew I really didn't want to go the C-section route if I really didn't have to. Time went on and Luke decided he wanted out...now! Too quickly though. As labor intensified, Luke wasn't reacting well and we started losing his heart beat. My quiet labor room that consisted of myself, Luke's dad, and a labor nurse turned very quickly into a room full of about 10 nurses and a few doctors. I will not go into details on how they got Luke's heart beat again, but I will say they finally got him to react and got a heart beat again and I was rushed immediately into surgery. From the time I was taken out of my room for surgery until the time of Luke's birth is very blurry. But I remember very clearly seeing my beautiful bundle of joy right after his delivery. He weighed 8 pounds 7.5 ounces and was 21 1/4 inches long...just absolutely perfect!
Fast forward 8 years and I am very proud of the person Luke is turning into! He wanted to be a big brother very badly and when he finally became a big brother, I saw a very nurturing, loving side to him that I had never seen before. Of course, I also saw the side to him where he couldn't go without an hour of picking on his little sister, but, I guess that's what big brothers do! Many, many times Luke has had to take the backseat to his sister's health, but through it all, he's always the first one to be concerned and ask how his sister is doing. He always wants to know she is okay.
To my little fisherman, farmer, baseball player and overall goofball...have a very HAPPY 8TH BIRTHDAY!! Enjoy your special day!!
Friday, September 20, 2013
September is a big month in this house! We started the month with the Hydrocephalus walk, it's Luke's 8th birthday on Saturday and it's also Hydrocephalus awareness month as well as Chiari Malformation awareness month! For many people, they have never heard of Hydrocephalus or Chiari Malformation - so here are a few quick facts about both conditions:
Chiari Malfmormation
- Chiari is a congenital (present at birth) defect, but people can acquire Chiari due to a traumatic head/brain injury.
- Many people have Chiari but don't even know they have it, as they are asymptomatic. There are many incidents of a person having an incidental finding of Chiari on an MRI as they are having an MRI for various other reasons.
- Research is currently being done to see if Chiari is genetic. Currently, there has not been a Chiari gene found, but it isn't uncommon for Chiari to be found in more than one family member.
- 1 in 1,000 people have Chiari.
Hydrocephalus
- 1 in 1,000 babies are born with Hydrocephalus, making it as common as Down's Syndrome and more common than Spina Bifida or brain tumors.
- Hydrocephalus is the most common reason for brain surgery in children.
- Over the last 50 years, there has been no significant improvement in Hydrocephalus treatment or progress toward prevention or a cure.
- An estimated 50% of shunts fail with in the first 2 years.
- Children who have been shunted for Hydrocephalus and who have cognitive delay or motor delay are more likely to develop seizures than those without cognitive or motor delays. A person can develop seizures at any age.
Chiari Malfmormation
- Chiari is a congenital (present at birth) defect, but people can acquire Chiari due to a traumatic head/brain injury.
- Many people have Chiari but don't even know they have it, as they are asymptomatic. There are many incidents of a person having an incidental finding of Chiari on an MRI as they are having an MRI for various other reasons.
- Research is currently being done to see if Chiari is genetic. Currently, there has not been a Chiari gene found, but it isn't uncommon for Chiari to be found in more than one family member.
- 1 in 1,000 people have Chiari.
Hydrocephalus
- 1 in 1,000 babies are born with Hydrocephalus, making it as common as Down's Syndrome and more common than Spina Bifida or brain tumors.
- Hydrocephalus is the most common reason for brain surgery in children.
- Over the last 50 years, there has been no significant improvement in Hydrocephalus treatment or progress toward prevention or a cure.
- An estimated 50% of shunts fail with in the first 2 years.
- Children who have been shunted for Hydrocephalus and who have cognitive delay or motor delay are more likely to develop seizures than those without cognitive or motor delays. A person can develop seizures at any age.
Monday, September 16, 2013
Yesterday, we walked in our first ever Hydrocephalus Association walk. Our team, Team Meghan, had 22 awesome walkers and our team raised $1,155 - well over our original goal of $500! I think that is pretty amazing being it's our first year walking!! Thank you, thank you, thank you to everyone who walked and/or donated! You guys are awesome! I would love to make this an annual event and we have a big goal for next year. I've been brainstorming of a few ways to fundraise already! Here are some pictures from the walk.
Friday, September 13, 2013
Whew! We have been super busy here lately! School started for Luke, therapy has resumed for Meghan, I've started a couple new daycare kids the last few weeks and we've been busy getting everything organized for the big WALK this weekend!!
I am so happy to say we exceeded our goal for the walk (by almost double)!!! How awesome is that! We also have a strong walking team of 20 walkers! I can't wait to experience our first walk! A huge THANK YOU to everyone who has donated and/or walking with us! We couldn't do this without the help of you all! There is still time to join our team or to donate. To do so, just click this link: http://walk4hydro.kintera.org/faf/search/searchTeamPart.asp?ievent=1077849&lis=1&kntae1077849=EDB26336EA3A4B2AB8E6FDC2429943C7&team=5568491. Luke and Meghan helped me make the team sign earlier this week and Meghan and I painted our toenails and fingernails. Well, I painted my fingernails but am still debating on whether to paint Megger's fingernails or not. I think we are ready!!! HA walk, here we come!
I am so happy to say we exceeded our goal for the walk (by almost double)!!! How awesome is that! We also have a strong walking team of 20 walkers! I can't wait to experience our first walk! A huge THANK YOU to everyone who has donated and/or walking with us! We couldn't do this without the help of you all! There is still time to join our team or to donate. To do so, just click this link: http://walk4hydro.kintera.org/faf/search/searchTeamPart.asp?ievent=1077849&lis=1&kntae1077849=EDB26336EA3A4B2AB8E6FDC2429943C7&team=5568491. Luke and Meghan helped me make the team sign earlier this week and Meghan and I painted our toenails and fingernails. Well, I painted my fingernails but am still debating on whether to paint Megger's fingernails or not. I think we are ready!!! HA walk, here we come!
Tuesday, August 27, 2013
Where did the summer go? This summer flew by so quickly. Luke is back in school already! We had a great summer and we got to spend lots of time with the kids, which is what is most important to me right now!
Now that school is back in session, Meghan will get back into therapy twice a week. This will be great for Meghan! We recently learned from Meghan's speech therapist, that Meghan has Childhood Apraxia of Speech. CAS is a motor speech disorder. Kids with CAS have problems saying sounds, syllables, and words. The brain has problems planning to move the needed body parts for speech (lips, tongue, jaw). The child knows what they want to say, but their brain has difficulty coordinating the muscle movements necessary to say the words. I think we've known for a few months that there was something off with Meghan's speech. She is SUPER smart and she knows what she wants, but has difficulty putting her wants into words. We are going in the right direction by doing sign language and speech therapy with her. Meghan is due to have her 6 month review of her IFSP (therapy plan and goals) in the next couple of weeks. She will then be re-tested in February. How she scores will tell us what our next step will be.
There is only 3 more weeks until the Hydrocephalus walk! So far, our team has 18 walkers! If you plan on walking, please register online in the next week or two! The walk coordinators would like to have everyone registered atleast a week before the walk, so they can plan accordingly as to how much food and beverages to plan on. If you need help registering, let me know and I'd be happy to help! Our team's goal is to raise $500! So far, we have raised $380! We are so close to our goal! If you, or someone you know, would like to donate to our team, be sure to collect the donations before the walk! To donate, enter donations you have collected, or to register to walk, just click this link: http://walk4hydro.kintera.org/faf/search/searchTeamPart.asp?ievent=1077849&lis=0&kntae1077849=0D4E954D632D4981A2CF781E6E025D35&team=5568491. Help us reach our goal...every little bit helps! All of the money raised goes to the Hydrocephalus Association to fund research for a CURE! As of a couple days ago, there were 17 teams registered.
Now that school is back in session, Meghan will get back into therapy twice a week. This will be great for Meghan! We recently learned from Meghan's speech therapist, that Meghan has Childhood Apraxia of Speech. CAS is a motor speech disorder. Kids with CAS have problems saying sounds, syllables, and words. The brain has problems planning to move the needed body parts for speech (lips, tongue, jaw). The child knows what they want to say, but their brain has difficulty coordinating the muscle movements necessary to say the words. I think we've known for a few months that there was something off with Meghan's speech. She is SUPER smart and she knows what she wants, but has difficulty putting her wants into words. We are going in the right direction by doing sign language and speech therapy with her. Meghan is due to have her 6 month review of her IFSP (therapy plan and goals) in the next couple of weeks. She will then be re-tested in February. How she scores will tell us what our next step will be.
There is only 3 more weeks until the Hydrocephalus walk! So far, our team has 18 walkers! If you plan on walking, please register online in the next week or two! The walk coordinators would like to have everyone registered atleast a week before the walk, so they can plan accordingly as to how much food and beverages to plan on. If you need help registering, let me know and I'd be happy to help! Our team's goal is to raise $500! So far, we have raised $380! We are so close to our goal! If you, or someone you know, would like to donate to our team, be sure to collect the donations before the walk! To donate, enter donations you have collected, or to register to walk, just click this link: http://walk4hydro.kintera.org/faf/search/searchTeamPart.asp?ievent=1077849&lis=0&kntae1077849=0D4E954D632D4981A2CF781E6E025D35&team=5568491. Help us reach our goal...every little bit helps! All of the money raised goes to the Hydrocephalus Association to fund research for a CURE! As of a couple days ago, there were 17 teams registered.
Friday, August 9, 2013
Oh little Meghan...the stories we will share with you when you are older are endless! I feel like I have aged 10 years in the last 1.5 years :) But...I wouldn't trade any of it for the world because the journey we are on with you has taught us so many things. It has taught us what compassion truly is. It has taught us not to be so judgemental of others. It has definitely taught us patience. It has taught us more about the human body than we ever imagined we'd know. We've learned funky terminology that the doctors talk to us about. But most of all, it has taught us how unbelievably strong such a little girl can be! You are amazingly strong and we are extremely proud of you! Yesterday, we were told of a slight setback. Your AFP test, which is a tumor marker blood test, came back at an elevated level. Elevated numbers are not our friends :( We want really really low numbers. But this is okay, because it is just another learning experience for us. The increase isn't an extreme jump from April, but it is considered a red flag to your doctors who keep a close eye on you. Your number could be elevated because it is picking up on something in the very very beginning stage, or it could just be a fluke. Mommy and Daddy think it's just a fluke and that it's just your sneaky way of keeping us on our toes! We are going to have you rechecked in 3 months and at that time, we hope to hear your number went back down to the normal range. We don't want another number increase. Mom and Dad are going to try really really hard to think positive! We sure hope the next 3 months go by fast so we have more answers! We know you will keep us very busy, which will help the time pass! You just keep being the happy, adorable little girl that you are and we know that everything will be okay :)
Wednesday, August 7, 2013
Meghan had a long day of therapy and doctor appointments today. I had the day off so I was able to sit in on therapy...wish I could do that more often! After therapy, we left for her doctor appointments. I was nervous about her ultra sound - last time she did not do so well with it. Today, she was such a trooper! She walked right in the room when the ultra sound tech called her name and I laid her down on the table and she let the tech do what she needed to do! No crying whatsoever! I think we were in and out in 15 minutes! Then we headed up to the Urologist appointment and she walked right with the nurse when we were called back! This is pretty huge as Meghan has been very apprehensive at doctor appointments so it was great seeing her be so willing to go with the flow today! Today was the first time meeting with the Urologist and he was super! Meghan has a little more fluid in her right kidney today than she did 4 months ago. However, this could be because she had a fuller bladder than last time. The severity of Hydronephrosis is graded from 1-4 with 1 being minor and 4 being severe. Today, Meghans was still a Grade 1, but closer to being Grade 2 than she was in April. Because Meghan has never had a UTI, he feels comfortable not doing any invasive testing right now and waiting a year to see her. However, if she would get a UTI within the next year, we would automatically have to do a VCUG. Although we are waiting a year to see him again, her Hydronephrosis will be monitored via ultra sound every 3 months (for a different condition) and if the fluid continues to increase, we will be back to see him. He did let us know that because of her syrinx on spine and Hydronephrosis, she could be difficult to potty train, but time will tell! Otherwise, everything looked good on the ultra sound images and no tumors were seen!! I always feel relieved when I hear that! Meghan also had the AFP test (tumor marker test) done today and we should have results by Tuesday. We waited 9 weeks to hear results of the chromosome test, and we just so happened to get those results while we were at Childrens! Everything came back good, but she does have a duplicated area on either the long or short arm of the X chromosome (I can't remember what the geneticist said). From what I understand, females with a duplicated x chromosome have no other health conditions associated with the duplication. I am happy but a little bummed that we don't have an explanation as to why Meghan has the conditions she has. The geneticist was bummed she wasn't able to provide us with answers yet, but we will be back to see them in November and have another geneticist look at her and possibly have more in depth testing done. She also couldn't give us an answer as to if any of Meghan's conditions will be passed down to her kids until further testing is done. She did put in a referral for Meghan to see an Endocrinologist. We all agreed it is time to find out if Meghan has any growth issues going on - especially since there isn't a chromosome issue affecting her growth. She is at a stand still height and weight wise. Meghan knows no different, but it literally breaks my heart when I see a 15 month old tower over my 26 month old. It could very well be that Meghan has no growth issues and will just be small, but as parents, we want solid answers from professionals!!
Of course, a trip to see the doctors in the cities just wouldn't be complete without a stop at Chili's!! We love Chili's!
Sleeping beauty after a busy day! Tuckered out!!
Of course, a trip to see the doctors in the cities just wouldn't be complete without a stop at Chili's!! We love Chili's!
Sleeping beauty after a busy day! Tuckered out!!
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