Since F's diagnosis, I have not been able to sleep. All I can do is scour the Internet for information, email specialists in the field of connective tissue disorders, contact networks and foundations for as much information as I can get my hands on. I mean, that's what a mother should do right?
My head is reeling! Chiari Malformation, what???? A side effect that many with Ehlers Danlos Syndrome develop. No one told me this! Dysautonomia? Ugh really? There is such a thing as too much information. I'm overwhelmed and over stressed to say the least. My husband keeps saying "what? Really? Why? When? How?". "Can I sell a kidney?". He's overwhelmed with all of this new information just as I am. It's to be expected. She's our baby. We don't want to think of any of these things happening to her. I mean seriously, we have enough to deal with right now. I just keep telling myself, the more information the better. It hurts, it's frightening but at least we know what to watch out for. If she starts complaining of terrible headaches or pressure then we haul ass to get her a MRI instead of not knowing and it being too late. Better to be over prepared then it is to be ignorant to it and getting blindsided.
Seriously though, when are we going to be able to sleep again? When are we going to be able to not stress and worry about every single aspect of our lives, most importantly about her life? We won't. This is our new life.
Tomorrow (rather today if you wish since it's after midnight) is the first day of the rest of our lives. Day one on our road to help F. Her treatment plan or "prevention" plan as you will since there really isn't a treatment, starts at 3:00pm. Beginning with day one of intensive therapy. I'm not sure I'm mentally prepared. I'm nervous, will she be scared? Will she be in pain? Will she hurt tomorrow night after this all? I don't know what to Expect and we get to do this 3 times a week indefinitely. That's not including everything else we have to squeeze in for her all week. Every week.
This is my new job. Being a stay a home mom for the last two years has been a great job but I literally mean this will be work. I don't care how long it takes or how exhausting it is or if we have to live in a card board box down by the river in order to pay for it all. I'll do it without a moments thought. F deserves us to push and fight to give her the best chance at an active, happy, pain free life. There are no things or vacations worth more than our daughter's well being and happiness. She is our joy, our love and our life.
I love this Crazy Tragic sometimes almost Magic awful BEAUTIFUL LIFE!!! Enjoy the ride full of family, fun, photos and crafty goodness!!
Showing posts with label Lifes Lessons. Show all posts
Showing posts with label Lifes Lessons. Show all posts
Monday, January 9, 2012
Friday, January 6, 2012
When diagnosis rocks your world
I haven't been able to blog for a little while due to circumstances beyond my control. With the holidays rapidly coming and going along with all the crafty goodness that I had to attend to it was a stretch. Then there was F. Some of you may know that we have struggled for quite some time with her mobility. We finally have complete pieces to the puzzle that was such a mystery to us.
It started when she was born prematurely. She was quite healthy for an early birth minus some jaundice but otherwise she was complication free. To see her as a newborn you wouldn't have a clue that anything was wrong. None of her physician's picked up on anything. As a newborn she was diagnosed that she had acid reflux, easy no big deal and it resolved when she could sit up on her own. She was diagnosed with Torticollis, again, easy no big deal some adjustments here and there and she was fine after a couple of months. Other than those 2 little bumps in the road, the first year of her life was pretty uneventful. She was speaking early and very well at that. Her Fine Motor skills were impeccable. She could pincher grasp grains of rice at 9 months old. However, her gross motor skills were quite lacking. Her pediatricians brushed it off saying that not all children excel at all areas and she may just be slower on her mobility than she was with everything else. Just give it time.
That was not a reasonable answer for me. I knew in my gut something was not right. I had written previously in October 2011 how we finally had a diagnosis. Well I was wrong. Apparently, so were they. Here is that previous post that fills you in a bit more on what has been going on. go ahead. click it and read it. I'll wait....
A Diagnosis and Lesson in Bravery from a 2 year old.
well that is where we were as of October. I wasn't prepared for this next whirlwind but deep down inside, I knew something far greater was going on. I just didn't really prepare myself or at least admit to myself that something was wrong.
We got the new AFO's which opened up a whole host of new issues. She started walking with her feet turned in, her hips started clicking terribly when you held her. You could feel all of her joints when you touch them click and rub and make actual sounds. It was frightening. I honestly was constantly saying to myself Oh My God what is happening. F started complaining about having boo boo knees and asking for someone to rub her legs or her back. She started getting horrendous nose bleeds at night and bruising on her legs very easily and deeply.
We took her back to the Doctor's office and they cauterized her nose for bleeding, referred us back to the Orthopedic Surgeon at Children's Hospital where we learned that we needed to see a Genetic Specialist. Something greater was going on here than just loose joints. Through a gamet of testing all of which my brave little girl, never cried or showed fear. At the most she would quietly say, OUCH. With Xrays and blood work, echocardiograms and all the things that run in between, we had an answer. Not one that we were prepared for in the slightest. We waited, held our breath and hoped to god everything was going to be ok..............It's not.
My beautiful, perfect little princess was diagnosed with a Rare Genetic Disorder. She has Ehlers Danlos Syndrome. It's a rare connective tissue disorder that affects your joints and blood vessels. There are defects in the genes responsible for the production of collagen. It can be fatal in some cases due to the hugely increased risk for Artery rupture, intestinal rupture, heart abnormalities etc. The list goes on an on. However, for F. It looks like only her small blood vessels are involved. Meaning little ones in the nose, on the skin surface that is responsible for bruising. Her heart is in perfect condition so at least that is HOPEFULLY one less worry we will have.
Another issue with EDS, is that children and adults alike with this syndrome can develop a whole host of MAST Cell syndromes. One specifically POTS which can cause increased pressure on the brain as one of the side effects of this condition. We will monitor her closely for head growth and vision issues but again, right now she is ok in this area.
Our main point of contention with this disorder is her joints. She has Hypotonia (very low muscle tone) and Severe Hypermobility and flexibility of the joints. If you take her little wrist, you can actually twist it almost completly in 360 degrees, sort of like you were wringing out a wet towel. Her hips click and are floppy, her knees and elbows bend in the opposite direction at times and her ankles buckle under the weight of her little body. All of these issues cause her to have a lot of mobility delays. She walks, unsteadily. Better with her braces but still falls. She can not run, jump, skip, hop or stand or flex on her toes. She most likely won't. She won't play any sports that require any sort of contact with other people or running. She will have to have a lot of assistance in school physically because simply holding a pencil for an 8 hour school day will be too much for her muscles and joints in her hands. It's a lot to think of, it's a lot to plan.
Cognitively there are zero issues or delays. Her IQ/Intelligence is uneffected and she will progress in areas academically as any other child without this syndrome will. It doesn't affect your mental capacity. In fact, she has exceled above her peers in many areas of language, memory and recognition.
We have to constantly be on watch for joint dislocations. With this disorder, it is one of those things that happens to everyone with this diagnosis......A LOT. We will have to deal with chronic pain and arthritis even at this yound age. It just breaks my heart that my beautiful little princess is going to have deal with pain for the rest of her life. She is such a tough little girl. She has come so far already. She is so brilliantly happy and unaware that anything is different. We the adults just have to learn how to do things Her way. We need to slow down and take our time, be gentle and tender. This is F's world, we have to adapt to it for her.
Our next step, research. Research, research. I don't think I have slept since her diagnosis. Scouring websites and corresponding with Doctors in this field via Email. They all keep coming back to me saying that F is one of the youngest diagnosed children they have heard of. Most children aren't diagnosed until they have chronic dislocations. Usually, their mobility issues are written off as something else before a concrete diagnosis is made. If it wasn't for the support of my parents, my sister and my husband (though often I feel like he has blinders on. I mean it's his princess. She is perfect. He has taken it rough to say the least). Like, I was saying, If it wasn't for the support of my family, helping me with the stress and letting me vent and pushing, pushing, pushing doctors for answers when I was not satisfied, we would have not known so early. We wouldn't have been given the opportunity to make changes NOW before serious joint damage occured. The amazing love that my parents and sister have given F is immeasurable. When we discuss her prognosis, they say eh, we can beat that. Nope, we can work on that. She is going to kick some Major EDS Ass! My dad, ahh be still my heart. When we were first dealing with this as a possiblity his response was, well she has an advantage. She may be one amazing professional dancer some day. Seriously, how awesome is that for a Papa to say? She loves them so much. My mom encourages her to chase my mom every single day around the house, chase the dogs etc to work those legs. It's just the sweetest display of love. Anyway, I digress as usual.
So F will endure intensive physical therapy 3 times a week indefinately, continued leg braces indefinately and other joint braces as injuries present themself. We will set forth in activities that will give her a sense of confidence all while working on some core issues. Swim for leg strength. Gymnastics and dance for balance and muscle tone just to name a few things. We are going to seek out chiropractic care and acupuncture care that specialize in Connective Tissue Disorders to help get a head start on pain management. Nutritional experts to help with our need to really load up on Vit C to help strengthen the blood vessel walls to help prevent them from breaking/rupturing. Find a nutritionist who specifically deals with connective tissue disorders more so collagen production and metabolization. Building lean muscle is so important but at the same time it is so hard to do in a child with hypotonia and joint issues. You can only do so much and again she is only 2 years old.
There is zero medical treatment, zero cure, zero medications to help and very little research going on. All we were told that we can do as parents is to help prevent injury. Help strengthen her and then treat as ailments start to progress as she ages. Sadly, these doctors have ZERO idea who they are dealing with. It is now my lifes mission to help raise awareness for my daughter. Find someway, someone, somehow to increase research on abnormalities in the synthesis and metabolism of collagen (a component of the matrix) and other connective tissue proteins.
For more information on EDS you can refer to NORD (the National Organization for Rare Disorders) http://www.rarediseases.org/
Or Ehlers Danlos National Foundation
http://www.ednf.org/
With some help from some amazing friends, there is a charitable event in the works that will directly send donations to the Ehlers Danlos Research Fund. I will be sure to post that as soon as it is up and running.
I have had my cry, I have had my time of why my little girl. It just proves how amazing she is when just last night, I was lying in bed with her on my chest watching a movie. Ironically, It was a Dolphin Tale. It was all about overcoming disability and I started to cry. My little girl simply said, no crying mama and then proceeded to say tickle tickle tickle while her little hands ran all over my face to make me laugh. At her young age, she is so loving and tender. She is worth every ounce of fight I have in me. We have to be her voice, her advocate. That is our job as parents to do everything we have to do to give her the best childhood, the happiest childhood that is possible.
In the meantime, here are just a couple of recent pictures of our beautiful little girl.
She may not be an athlete but my little comedian and singer may rock a NY Stage someday!! The world is hers to do as she wishes. We just have to adjust the world for her.
It started when she was born prematurely. She was quite healthy for an early birth minus some jaundice but otherwise she was complication free. To see her as a newborn you wouldn't have a clue that anything was wrong. None of her physician's picked up on anything. As a newborn she was diagnosed that she had acid reflux, easy no big deal and it resolved when she could sit up on her own. She was diagnosed with Torticollis, again, easy no big deal some adjustments here and there and she was fine after a couple of months. Other than those 2 little bumps in the road, the first year of her life was pretty uneventful. She was speaking early and very well at that. Her Fine Motor skills were impeccable. She could pincher grasp grains of rice at 9 months old. However, her gross motor skills were quite lacking. Her pediatricians brushed it off saying that not all children excel at all areas and she may just be slower on her mobility than she was with everything else. Just give it time.
That was not a reasonable answer for me. I knew in my gut something was not right. I had written previously in October 2011 how we finally had a diagnosis. Well I was wrong. Apparently, so were they. Here is that previous post that fills you in a bit more on what has been going on. go ahead. click it and read it. I'll wait....
A Diagnosis and Lesson in Bravery from a 2 year old.
well that is where we were as of October. I wasn't prepared for this next whirlwind but deep down inside, I knew something far greater was going on. I just didn't really prepare myself or at least admit to myself that something was wrong.
We got the new AFO's which opened up a whole host of new issues. She started walking with her feet turned in, her hips started clicking terribly when you held her. You could feel all of her joints when you touch them click and rub and make actual sounds. It was frightening. I honestly was constantly saying to myself Oh My God what is happening. F started complaining about having boo boo knees and asking for someone to rub her legs or her back. She started getting horrendous nose bleeds at night and bruising on her legs very easily and deeply.
We took her back to the Doctor's office and they cauterized her nose for bleeding, referred us back to the Orthopedic Surgeon at Children's Hospital where we learned that we needed to see a Genetic Specialist. Something greater was going on here than just loose joints. Through a gamet of testing all of which my brave little girl, never cried or showed fear. At the most she would quietly say, OUCH. With Xrays and blood work, echocardiograms and all the things that run in between, we had an answer. Not one that we were prepared for in the slightest. We waited, held our breath and hoped to god everything was going to be ok..............It's not.
My beautiful, perfect little princess was diagnosed with a Rare Genetic Disorder. She has Ehlers Danlos Syndrome. It's a rare connective tissue disorder that affects your joints and blood vessels. There are defects in the genes responsible for the production of collagen. It can be fatal in some cases due to the hugely increased risk for Artery rupture, intestinal rupture, heart abnormalities etc. The list goes on an on. However, for F. It looks like only her small blood vessels are involved. Meaning little ones in the nose, on the skin surface that is responsible for bruising. Her heart is in perfect condition so at least that is HOPEFULLY one less worry we will have.
Another issue with EDS, is that children and adults alike with this syndrome can develop a whole host of MAST Cell syndromes. One specifically POTS which can cause increased pressure on the brain as one of the side effects of this condition. We will monitor her closely for head growth and vision issues but again, right now she is ok in this area.
Our main point of contention with this disorder is her joints. She has Hypotonia (very low muscle tone) and Severe Hypermobility and flexibility of the joints. If you take her little wrist, you can actually twist it almost completly in 360 degrees, sort of like you were wringing out a wet towel. Her hips click and are floppy, her knees and elbows bend in the opposite direction at times and her ankles buckle under the weight of her little body. All of these issues cause her to have a lot of mobility delays. She walks, unsteadily. Better with her braces but still falls. She can not run, jump, skip, hop or stand or flex on her toes. She most likely won't. She won't play any sports that require any sort of contact with other people or running. She will have to have a lot of assistance in school physically because simply holding a pencil for an 8 hour school day will be too much for her muscles and joints in her hands. It's a lot to think of, it's a lot to plan.
Cognitively there are zero issues or delays. Her IQ/Intelligence is uneffected and she will progress in areas academically as any other child without this syndrome will. It doesn't affect your mental capacity. In fact, she has exceled above her peers in many areas of language, memory and recognition.
We have to constantly be on watch for joint dislocations. With this disorder, it is one of those things that happens to everyone with this diagnosis......A LOT. We will have to deal with chronic pain and arthritis even at this yound age. It just breaks my heart that my beautiful little princess is going to have deal with pain for the rest of her life. She is such a tough little girl. She has come so far already. She is so brilliantly happy and unaware that anything is different. We the adults just have to learn how to do things Her way. We need to slow down and take our time, be gentle and tender. This is F's world, we have to adapt to it for her.
Our next step, research. Research, research. I don't think I have slept since her diagnosis. Scouring websites and corresponding with Doctors in this field via Email. They all keep coming back to me saying that F is one of the youngest diagnosed children they have heard of. Most children aren't diagnosed until they have chronic dislocations. Usually, their mobility issues are written off as something else before a concrete diagnosis is made. If it wasn't for the support of my parents, my sister and my husband (though often I feel like he has blinders on. I mean it's his princess. She is perfect. He has taken it rough to say the least). Like, I was saying, If it wasn't for the support of my family, helping me with the stress and letting me vent and pushing, pushing, pushing doctors for answers when I was not satisfied, we would have not known so early. We wouldn't have been given the opportunity to make changes NOW before serious joint damage occured. The amazing love that my parents and sister have given F is immeasurable. When we discuss her prognosis, they say eh, we can beat that. Nope, we can work on that. She is going to kick some Major EDS Ass! My dad, ahh be still my heart. When we were first dealing with this as a possiblity his response was, well she has an advantage. She may be one amazing professional dancer some day. Seriously, how awesome is that for a Papa to say? She loves them so much. My mom encourages her to chase my mom every single day around the house, chase the dogs etc to work those legs. It's just the sweetest display of love. Anyway, I digress as usual.
So F will endure intensive physical therapy 3 times a week indefinately, continued leg braces indefinately and other joint braces as injuries present themself. We will set forth in activities that will give her a sense of confidence all while working on some core issues. Swim for leg strength. Gymnastics and dance for balance and muscle tone just to name a few things. We are going to seek out chiropractic care and acupuncture care that specialize in Connective Tissue Disorders to help get a head start on pain management. Nutritional experts to help with our need to really load up on Vit C to help strengthen the blood vessel walls to help prevent them from breaking/rupturing. Find a nutritionist who specifically deals with connective tissue disorders more so collagen production and metabolization. Building lean muscle is so important but at the same time it is so hard to do in a child with hypotonia and joint issues. You can only do so much and again she is only 2 years old.
There is zero medical treatment, zero cure, zero medications to help and very little research going on. All we were told that we can do as parents is to help prevent injury. Help strengthen her and then treat as ailments start to progress as she ages. Sadly, these doctors have ZERO idea who they are dealing with. It is now my lifes mission to help raise awareness for my daughter. Find someway, someone, somehow to increase research on abnormalities in the synthesis and metabolism of collagen (a component of the matrix) and other connective tissue proteins.
For more information on EDS you can refer to NORD (the National Organization for Rare Disorders) http://www.rarediseases.org/
Or Ehlers Danlos National Foundation
http://www.ednf.org/
With some help from some amazing friends, there is a charitable event in the works that will directly send donations to the Ehlers Danlos Research Fund. I will be sure to post that as soon as it is up and running.
I have had my cry, I have had my time of why my little girl. It just proves how amazing she is when just last night, I was lying in bed with her on my chest watching a movie. Ironically, It was a Dolphin Tale. It was all about overcoming disability and I started to cry. My little girl simply said, no crying mama and then proceeded to say tickle tickle tickle while her little hands ran all over my face to make me laugh. At her young age, she is so loving and tender. She is worth every ounce of fight I have in me. We have to be her voice, her advocate. That is our job as parents to do everything we have to do to give her the best childhood, the happiest childhood that is possible.
In the meantime, here are just a couple of recent pictures of our beautiful little girl.
She may not be an athlete but my little comedian and singer may rock a NY Stage someday!! The world is hers to do as she wishes. We just have to adjust the world for her.
Tuesday, November 29, 2011
Just keep crafting
I mostly blog from my phone these days. I need to find time to post photographs of all the wonderful goodies I've been creating.
I am really loving this "homemade" Christmas. Nothing screams I love you more than taking the time to think and devise a gift plan, seek out or design your own pattern, select the perfect fabrics and prints for each person and then create it all with your very own heart and hands.
Anyone can trek to the mall and buy a gift or gift card. Why not think out of the box?
I have some great gifts that I have completed to show you all. I'm hoping in the next couple of days, I'll be able to upload some photographs and share.
My goal is "24 Crafts Till Christmas" with a craft countdown each day until the holiday arrives.
Starting December 1st, so be on the look out for some crafty fun. Of course in true tradition, if I fail a craft, I will still post it. Hopefully a crafter out there can learn from my error and help figure out a solution ( cough::my topiary::cough)
Peace, love and shutter clicks,
Mandy
I am really loving this "homemade" Christmas. Nothing screams I love you more than taking the time to think and devise a gift plan, seek out or design your own pattern, select the perfect fabrics and prints for each person and then create it all with your very own heart and hands.
Anyone can trek to the mall and buy a gift or gift card. Why not think out of the box?
I have some great gifts that I have completed to show you all. I'm hoping in the next couple of days, I'll be able to upload some photographs and share.
My goal is "24 Crafts Till Christmas" with a craft countdown each day until the holiday arrives.
Starting December 1st, so be on the look out for some crafty fun. Of course in true tradition, if I fail a craft, I will still post it. Hopefully a crafter out there can learn from my error and help figure out a solution ( cough::my topiary::cough)
Peace, love and shutter clicks,
Mandy
Friday, November 25, 2011
Thanksgiving.....
As thanksgiving has come and gone, what are you thankful for this year?
I have so much to be thankful for. I could never begin to list every single thing today. I'm thankful year round for all that I have been blessed with.
As I lie here tonight with my husband beside me, I'm most thankful that he made it home safely from yet another year long deployment. I'm thankful that he is here with us after a very rough, scary, emotional reintegration upon his return.
I'm thankful for the health of my family. I'm thankful that I've been blessed with my family to be so supportive especially this year with all the crazy ups and downs and uncertainties.
I'm thankful for the love of my family. All the children, grandchild and furbabies that we have all been blessed with.
I'm thankful that regardless of obstacles, my daughter perseveres and carries on as if there is nothing holding her back. Her smile, her laugh, her constant singing and being silly just shows that nothing will get in her way.
I'm thankful that I am here to be a part and share in everyones lives.
I'm thankful for my friends who stuck by me through thick and thin and believed in me when I needed it. Their strength only helped to prove it was the right choice in the end regardless of what anyone else had to say or create to make themselves feel better. Karma is unfortunate for some. Thankfully I'm on the good side of that.
I'm thankful that my mom (who reads this) has set such wonderful traditions for us all to carry on for our children. Someday your grandchildren will be sitting around their thanksgiving table with their children talking about how Mum did these special things for them.
I'm thankful for being able to be free enough to write this post because of all the sacrifices our armed forces make for us.
I'm thankful for having another year in which I have so much to be thankful for
Keeping in tradition...heres a crappy cell phone pic. I'm thankful that my daughter got to snuggle and watch movies with her daddy thanksgiving morning when this could have been so very different a few months ago.
I have so much to be thankful for. I could never begin to list every single thing today. I'm thankful year round for all that I have been blessed with.
As I lie here tonight with my husband beside me, I'm most thankful that he made it home safely from yet another year long deployment. I'm thankful that he is here with us after a very rough, scary, emotional reintegration upon his return.
I'm thankful for the health of my family. I'm thankful that I've been blessed with my family to be so supportive especially this year with all the crazy ups and downs and uncertainties.
I'm thankful for the love of my family. All the children, grandchild and furbabies that we have all been blessed with.
I'm thankful that regardless of obstacles, my daughter perseveres and carries on as if there is nothing holding her back. Her smile, her laugh, her constant singing and being silly just shows that nothing will get in her way.
I'm thankful that I am here to be a part and share in everyones lives.
I'm thankful for my friends who stuck by me through thick and thin and believed in me when I needed it. Their strength only helped to prove it was the right choice in the end regardless of what anyone else had to say or create to make themselves feel better. Karma is unfortunate for some. Thankfully I'm on the good side of that.
I'm thankful that my mom (who reads this) has set such wonderful traditions for us all to carry on for our children. Someday your grandchildren will be sitting around their thanksgiving table with their children talking about how Mum did these special things for them.
I'm thankful for being able to be free enough to write this post because of all the sacrifices our armed forces make for us.
I'm thankful for having another year in which I have so much to be thankful for
Keeping in tradition...heres a crappy cell phone pic. I'm thankful that my daughter got to snuggle and watch movies with her daddy thanksgiving morning when this could have been so very different a few months ago.
Monday, November 7, 2011
Christmas old school!
This year I have decided (as well as my mom) that Christmas is not going to be about commercialism. It's about family. Thoughtful gift giving, time spent loving and cherishing the time we have. I'm so tired of the hustle and bustle of making lists, standing in lines, getting pushed and shoved in order to get the latest and greatest gadget to give someone as a gift.
I'm over it. I'm over the insane costs of things these days. Really, does it really cost $0.88 for one little orange? Blech! It's time to protect my ultimate investment. My family. Our retirement. Our way of living. I'm not about to spend exorbitant amounts of money for two seconds of tearing it opened then it gets forgotten about in a few weeks time.
With the state of the economy, uncertainty of our economic future, mounting medical expenses for my little princess it's not time to mindlessly spend. That's not what the holiday season is about. My most important investment isn't a cashmere sweater but my daughter's well being. That's where my money is going and saving for a rainy day for her needs on top of ordinary family savings.
This year, it's a handmade Christmas. I can sew, I can knit and I craft with the best of them. While the kids in the family will still have items on their wishlists purchased, the adults are getting time, love and tradition. Time to search out the perfect gift. Formulate a plan and create it. It takes much more love, thought and sentiment to have a handmade Christmas than to give gift cards with zero meaning.
I'm excited to get started. There's a lot of people to start creating for! Wish me luck. There's only 6 weeks left!
I'm over it. I'm over the insane costs of things these days. Really, does it really cost $0.88 for one little orange? Blech! It's time to protect my ultimate investment. My family. Our retirement. Our way of living. I'm not about to spend exorbitant amounts of money for two seconds of tearing it opened then it gets forgotten about in a few weeks time.
With the state of the economy, uncertainty of our economic future, mounting medical expenses for my little princess it's not time to mindlessly spend. That's not what the holiday season is about. My most important investment isn't a cashmere sweater but my daughter's well being. That's where my money is going and saving for a rainy day for her needs on top of ordinary family savings.
This year, it's a handmade Christmas. I can sew, I can knit and I craft with the best of them. While the kids in the family will still have items on their wishlists purchased, the adults are getting time, love and tradition. Time to search out the perfect gift. Formulate a plan and create it. It takes much more love, thought and sentiment to have a handmade Christmas than to give gift cards with zero meaning.
I'm excited to get started. There's a lot of people to start creating for! Wish me luck. There's only 6 weeks left!
Friday, October 14, 2011
A diagnosis and lesson in bravery from a 2 year old
For my dear friends who ask for updates on F and a recap for new followers.
I've mentioned in my old blog about some struggles we've been having with our little girl's mobility. Along with her waking often at night (she has a short spell where she didn't). She has a difficult time walking. At 2 years old (in a few weeks) she can't run, jump, climb or stand up on her toes.
We've seen multiple providers, specials shoes, heel wedges, orthos, swim lessons and gymnastics all in effort to help with balance, strengthen her legs and ankles much to no avail.
My parents have been huge supporters in my need/desire as F's mother to find someone or something to help her. No one has given us a concrete diagnosis other than her having flat feet and floppy ankles. Just a bunch of try this, wait until she's in grade school and see how things are. Well that doesn't work for me. My parents who see her daily agreed that waiting just wasn't an option. F already acknowledges she has boo boos on her feet. She often has huge blisters no matter what shoe, sock brand we use. Whether it's stride rite, clarks or generic shoes, they hurt her. She fatigues easily and asks to be carried. Waiting just means more discomfort, more time to develop an unhealthy walking pattern.
Until today. After almost a year of pushing and pushing, talking to doctors, providers, talking to my mom's prosthetic provider, we finally go in to see a new orthopaedic at Erlanger who immediately referred us (same day appointment) to the Siskin hospital for physical rehabilitation. I don't think I cried such tears of relief. Finally answers, a firm concrete plan of action.....A DIAGNOSIS!! A name... Words that explain. Having those words mean we can move forward. Also the infuriating pain I have thinking what if I hadn't pushed? What if I didn't have supportive parents who agreed that something needs to be done And I wasn't imagining she was hurting? Where would F be in 4 years when she reaches an age where the medical world we were in tune with cared? An angel by the name of Dr. Z changed the what ifs!!
Granted the prognosis isn't any better. In fact its worse than we thought but hell if this is our "battle" we will take it. There are far worse medical issues we could have been facing.
Dr Z upon just looking at F and touching her quickly came to her diagnosis. Swiftly sending us off for joint and ligament studies, nerve conduction studies and another consult. She too felt as we had that we shouldn't wait, let's act now so that we can prevent any further hardship to F.
She has something simple to some but significant to a toddler trying to learn mobility, significant to someone who wants to lead and active life. It will affect her forever. No cure just simple preventative measures to protect her joints.
She has Ligamentous dyslaxity, hypermobility in all of her joints and some pain/discomfort issues. It means all the ligaments that hold her joints in place (shoulders, knees, elbows, ankles etc) are all extremely long and loose. It causes her joints to click, bend backwards and hyper extend. In a growing toddler that means ankles that roll and knees that give out (she hasn't had any knee issues) when trying to learn how to be mobile. Her body is working twice as hard to walk and do things as the average child which tires her quickly, causes some joint pain she most likely won't sleep through the night for years due to the joint pain and fatigue Sadly, there isn't anything we can do for all of her joints other than be cautious. Knee braces if she wants to participate in certain activities, no contact sports such as soccer due to a huge risk for joint injuries. She was casted and fitted today for new orthotics. This particular set will go up to her knees. Far more extreme than we were accustomed to but hey, whatever we need for her we do it. No questions asked, move forward and teach her, her new norm.
We were advised to keep her in gymnastics, get her in a dance class. Put her in activities that she can excel at and love. The plus side of this condition is that she is hyper flexible. Which means if she loves dance or gymnastics, she has a little edge due to her ability to bend and flex in ways most people can never dream of. If she doesn't like gymnastics or dance then we buy her a clarinet or drum set, a camera or pot and pan set whatever it is she wants to participate in. Extracurricular activities are a must. She will find her niche. If she's anything like her grandma whom she already shadows, F will be an amazing dancer (she already has mad carseat dancing skillz aha).
As far as bravery, my not quite two year old was amazing!! It's like she somehow knew that everything she was enduring today was to help her. It was a long day. We left our home at 8:45am and didn't get back until 6:15pm. It was a full days work for her. Being poked, prodded, twisted, forced to walk and flex. Having to lie down still for awhile, sit and have both legs casted. She laughed, smiled, and was silly through it all. Telling mommy and daddy that it's alright, no ouch and she's sleepy so she was just going to lie down while they did things. She repeated to us everything they were doing to her (they sweetly talked her through it all so there weren't any surprises for her). I don't think I could ever love my brave girl anymore than I do. As I was nervous for her, she consoled me by sharing her lovey or being silly. Just an amazing child. I'm so thankful my husband is here with us through it.
Today (since it's already 1am) is going to be a F day!!!! All about her just fun with mommy and daddy! Her big 2nd birthday party is next weekend so there is a lot up get to still.
Oh duh!!! Did I mention she picked out her own leg braces?? She had to absolutely have the purple butterfly orthotics. Such a girl!
Here is my brave girl
I've mentioned in my old blog about some struggles we've been having with our little girl's mobility. Along with her waking often at night (she has a short spell where she didn't). She has a difficult time walking. At 2 years old (in a few weeks) she can't run, jump, climb or stand up on her toes.
We've seen multiple providers, specials shoes, heel wedges, orthos, swim lessons and gymnastics all in effort to help with balance, strengthen her legs and ankles much to no avail.
My parents have been huge supporters in my need/desire as F's mother to find someone or something to help her. No one has given us a concrete diagnosis other than her having flat feet and floppy ankles. Just a bunch of try this, wait until she's in grade school and see how things are. Well that doesn't work for me. My parents who see her daily agreed that waiting just wasn't an option. F already acknowledges she has boo boos on her feet. She often has huge blisters no matter what shoe, sock brand we use. Whether it's stride rite, clarks or generic shoes, they hurt her. She fatigues easily and asks to be carried. Waiting just means more discomfort, more time to develop an unhealthy walking pattern.
Until today. After almost a year of pushing and pushing, talking to doctors, providers, talking to my mom's prosthetic provider, we finally go in to see a new orthopaedic at Erlanger who immediately referred us (same day appointment) to the Siskin hospital for physical rehabilitation. I don't think I cried such tears of relief. Finally answers, a firm concrete plan of action.....A DIAGNOSIS!! A name... Words that explain. Having those words mean we can move forward. Also the infuriating pain I have thinking what if I hadn't pushed? What if I didn't have supportive parents who agreed that something needs to be done And I wasn't imagining she was hurting? Where would F be in 4 years when she reaches an age where the medical world we were in tune with cared? An angel by the name of Dr. Z changed the what ifs!!
Granted the prognosis isn't any better. In fact its worse than we thought but hell if this is our "battle" we will take it. There are far worse medical issues we could have been facing.
Dr Z upon just looking at F and touching her quickly came to her diagnosis. Swiftly sending us off for joint and ligament studies, nerve conduction studies and another consult. She too felt as we had that we shouldn't wait, let's act now so that we can prevent any further hardship to F.
She has something simple to some but significant to a toddler trying to learn mobility, significant to someone who wants to lead and active life. It will affect her forever. No cure just simple preventative measures to protect her joints.
She has Ligamentous dyslaxity, hypermobility in all of her joints and some pain/discomfort issues. It means all the ligaments that hold her joints in place (shoulders, knees, elbows, ankles etc) are all extremely long and loose. It causes her joints to click, bend backwards and hyper extend. In a growing toddler that means ankles that roll and knees that give out (she hasn't had any knee issues) when trying to learn how to be mobile. Her body is working twice as hard to walk and do things as the average child which tires her quickly, causes some joint pain she most likely won't sleep through the night for years due to the joint pain and fatigue Sadly, there isn't anything we can do for all of her joints other than be cautious. Knee braces if she wants to participate in certain activities, no contact sports such as soccer due to a huge risk for joint injuries. She was casted and fitted today for new orthotics. This particular set will go up to her knees. Far more extreme than we were accustomed to but hey, whatever we need for her we do it. No questions asked, move forward and teach her, her new norm.
We were advised to keep her in gymnastics, get her in a dance class. Put her in activities that she can excel at and love. The plus side of this condition is that she is hyper flexible. Which means if she loves dance or gymnastics, she has a little edge due to her ability to bend and flex in ways most people can never dream of. If she doesn't like gymnastics or dance then we buy her a clarinet or drum set, a camera or pot and pan set whatever it is she wants to participate in. Extracurricular activities are a must. She will find her niche. If she's anything like her grandma whom she already shadows, F will be an amazing dancer (she already has mad carseat dancing skillz aha).
As far as bravery, my not quite two year old was amazing!! It's like she somehow knew that everything she was enduring today was to help her. It was a long day. We left our home at 8:45am and didn't get back until 6:15pm. It was a full days work for her. Being poked, prodded, twisted, forced to walk and flex. Having to lie down still for awhile, sit and have both legs casted. She laughed, smiled, and was silly through it all. Telling mommy and daddy that it's alright, no ouch and she's sleepy so she was just going to lie down while they did things. She repeated to us everything they were doing to her (they sweetly talked her through it all so there weren't any surprises for her). I don't think I could ever love my brave girl anymore than I do. As I was nervous for her, she consoled me by sharing her lovey or being silly. Just an amazing child. I'm so thankful my husband is here with us through it.
Today (since it's already 1am) is going to be a F day!!!! All about her just fun with mommy and daddy! Her big 2nd birthday party is next weekend so there is a lot up get to still.
Oh duh!!! Did I mention she picked out her own leg braces?? She had to absolutely have the purple butterfly orthotics. Such a girl!
Here is my brave girl
Tuesday, October 11, 2011
I Giggle!
I love this!! It makes me laugh so hard that people out there think that because they don't like you, that it has some grand affect on your life. I think life continues to move on, no? Why bother surrounding yourself with negative people? Better yet, why care? Life is too short and too value to waste one minute second of your precious time here on earth giving 2 shits about someone who has ZERO bearing on your life. This little Cartoon was on a Friends Facebook Page. I love it but I hate that she would have someone in her life that made her feel the need to post it. Too short man, life is too short.
Friday, October 7, 2011
Aweee dad loves me
The big joke here at Five Pines is that I park like a princess. My parents have a ridiculously long driveway that's winding and goes over a creek. It's a beautiful country driveway complete with rhode island red roosters/chickens running to greet you for a treat. However, I fail at attempting to back out of it. Instead, when I park I always park stupidly so I can just turn about and drive out of the driveway.
My sweet sweet dad sacrifices his spot in the two vehicle parking area for me to not drive into the quail pens or creek aha and he parks up higher in the driveway and backs into his spot instead of right in front of the house/walkway.
After holding down the fort by himself for 5 days, mind you complete with quail, chicken, 3 dogs, 8 new puppies (that stay indoors to be with their mama) he not only kept the house as clean as he could, maintained and worked his butt off on the property (it looks amazing!!) but he fitted me with a parking spot! Not only did he make me a reserved parking sign but he painted it pink!!! How freaking awesomely sweet is that. First the sign alone touched my heart but PINK!!! Pink is Pimp, I buy all things pink if I can in support of breast cancer awareness for myself and every other woman out there. And umm hello pink is just plain awesome!
How sweet is my handmade sign from my dad?!?!?????
My sweet sweet dad sacrifices his spot in the two vehicle parking area for me to not drive into the quail pens or creek aha and he parks up higher in the driveway and backs into his spot instead of right in front of the house/walkway.
After holding down the fort by himself for 5 days, mind you complete with quail, chicken, 3 dogs, 8 new puppies (that stay indoors to be with their mama) he not only kept the house as clean as he could, maintained and worked his butt off on the property (it looks amazing!!) but he fitted me with a parking spot! Not only did he make me a reserved parking sign but he painted it pink!!! How freaking awesomely sweet is that. First the sign alone touched my heart but PINK!!! Pink is Pimp, I buy all things pink if I can in support of breast cancer awareness for myself and every other woman out there. And umm hello pink is just plain awesome!
How sweet is my handmade sign from my dad?!?!?????
My mom turned MOMgyver
Well we are finally home after over a month of craziness!! My wee one and I have logged approximately 4,500 miles traveled this month. It's been stressful and exhausting but We are all finally home in Tennessee for now fora month at least.
After driving all the way to New York, flying back to Tennessee only to promptly get into my SUV and turn around and drive back to get my husband and head back to TN. My mom luckily came with me on this second part of our 3 part east coast trek.
We had a fabulous easy breezy trip minus the $124 speeding ticket I was gifted by the lovely Virginia highway patrol. Listening to old music, reminiscing about old times, visiting some family, enjoying some good food and just enjoying it the best we could within the confines of the chaos.
On the way up north I had borrowed my dad's GPS seeing I had forgotten mine in my husband's car in NY. His was different than mine, super bright and was giving me a serious headache right behind my eye.
I found my mom rustling in her bag for a moment. Suddenly she whipped out an item and covered the GPS. Brilliant!!! This item muted the brightness of the light but still allowed me to perfectly see the GPS location and directions.
Here is the GPS pre Momgyver and post Momgyver.
Thank you Sanitary Napkins for your nice cloth like thin paper individual packages. For without you and my moms super skills, I may blind today!! Talk about mom skillzzzzzzzz
Tuesday, September 27, 2011
Love
I love when I am able to log onto a computer after a hectic day and see all the love my blog has been getting. It makes me all warm and fuzzy inside when I know that I'm being thought of, talked about, referred to. #winning
I'd like to give a shout out to Ohio, CT, Indiana, NY, Scotland, Canada, Miami, Georgia, NH, PA,California, Nebraska, Michigian, Iowa, Texas, SC, NC, MA, WA, NJ,
SHUT THE FRONT DOOR YALL! I got myself a reader from Bahrain!!!!!!!!!! Well, I'll be..... look at that. Fancy me now! Now if that ain't a "hot box of crazy".....
If my name is still in your mouth and on your mind, then clearly I am still winning......food for thought.
Holla!! Thanks for all the love...My cup runneth over!! xoxoxo miss yall
I'd like to give a shout out to Ohio, CT, Indiana, NY, Scotland, Canada, Miami, Georgia, NH, PA,California, Nebraska, Michigian, Iowa, Texas, SC, NC, MA, WA, NJ,
SHUT THE FRONT DOOR YALL! I got myself a reader from Bahrain!!!!!!!!!! Well, I'll be..... look at that. Fancy me now! Now if that ain't a "hot box of crazy".....
If my name is still in your mouth and on your mind, then clearly I am still winning......food for thought.
Holla!! Thanks for all the love...My cup runneth over!! xoxoxo miss yall
Friends....or just acquiantances?
Ever wonder if the people you surround yourself by are truly friends or merely acquiantances just passing through the halls of life near you not with you?
Have you ever had a defining moment in your friendship when you realize those you thought you could rely on the most, entrust the most, confide in the most really were just going through the motions not really listening, absorbing or supporting but instead just lingering about behind a mask of friendship?
When things get hard or ugly, are your friends truly there? Do they listen to your thoughts, formulate their own opinions based on how well they know you as a person or do they simply sit idly by and jump on the ship hatred and dismissal without as much as a nod or question or explanation?
It's moments like this that define who a person is. It's moments like this that make you re-evaluate your judgment. You become more guarded when developing new friendships yet at the same time it forces you to hold tight And appreciate the few true lasting non-judgmental friendships that remain.
It's those who chose to remember all of the good, all of the support, love and encouragement that had been given through the years without ever asking for anything in return. The selfless acts of friendship extended throughout time that are representative of true friendship. That acts then went unwarranted and unasked for yet you still felt compelled to step forward, speak up and do something to show your camaraderie and silent support in times when they are tough. That is a true friend.
An acquiantance can appear through the disguise of friendship. When shit hits the fan, are they at least respectful enough to say "hey what's going on?". Do they reach out and say " things may be hard right now but with the love and support you have given me, my friend, over the years we can work through and overcome" as friends would do. A true friend would wholeheartedly do the afore mentioned. An acquaintance doesn't pick up the phone to hear for themselves, an acquiantance doesn't shoot an email or text expressing their hurt or concern, an acquaintance simply sits idly by allowing you to hurt, allowing others to defame, attack, verbally beat you down all while either joining in on the mass assault or even worse says nothing at all.
That person is someone who was never a friend to begin with if they can dismiss you like yesterday's garbage without a second thought.
True friends are those who reach out and formulate their thoughts, lend support even if it still means in the end they feel it's best to severe ties with said friendship. The fact is, in all the ugly they loved you enough to tell you personally that they need to step back. They were grateful for all you had given of yourself that they cared enough to respect the need for closure. That is a friend that has deepened a ridge across your heart and your memory so while they aren't present in your physical life, they are forever in your heart in memory of the wonderful moments that your friendship carried through the years.
That acquaintance who turned a blind eye, threw away years of laughs, years of joy, years of tears all in a moment to join the mob hysteria ends up being like a ship passing in the night. Barely a memory because in time it all fades.
Eventually as dust settles and integrity returns to the soul, what's done can't be undone so hopefully the acquiantance can sleep at night feeling as if they did everything they could or at least for the better of themselves.
As for me, I'm a ride or die kind of friend. Unless something was physically done to me, I'll stand by my friends because everyone needs someone in their corner. Those who fail to see that and thrive on the pain of others or take joy in ripping them to shreds only act that way because they are lacking something in their lives. Insecure about their place in the friendships or ungrateful for all the support they received.
Witch hunts happen out of fear and the need to set an example. The actions taken by those who participate in that hunt are far more viscous, hate worthy and despicable than the crime the witch is being convicted of....... Without a fair trial.
Oh and lastly, just an FYI....grieving. People grieve differently. Some get drunk, some stay home quiet, some write, some try and stay busy. In the end if there is nothing you can do about it you can't just sit home and shrivel up and claim defeat. You pull yourself up by your big girl panties and move on. You have a life to live and by sitting home wollowing in self pity you just continue to concede. Instead take the lemons and limes that life handed you and make some kick ass Margaritas and toast life for taking out the things in your life that clearly you had ZERO need for.
ETA: Giggling inside.......just giggling..I <3 trackers
Sent from my iPhone
Have you ever had a defining moment in your friendship when you realize those you thought you could rely on the most, entrust the most, confide in the most really were just going through the motions not really listening, absorbing or supporting but instead just lingering about behind a mask of friendship?
When things get hard or ugly, are your friends truly there? Do they listen to your thoughts, formulate their own opinions based on how well they know you as a person or do they simply sit idly by and jump on the ship hatred and dismissal without as much as a nod or question or explanation?
It's moments like this that define who a person is. It's moments like this that make you re-evaluate your judgment. You become more guarded when developing new friendships yet at the same time it forces you to hold tight And appreciate the few true lasting non-judgmental friendships that remain.
It's those who chose to remember all of the good, all of the support, love and encouragement that had been given through the years without ever asking for anything in return. The selfless acts of friendship extended throughout time that are representative of true friendship. That acts then went unwarranted and unasked for yet you still felt compelled to step forward, speak up and do something to show your camaraderie and silent support in times when they are tough. That is a true friend.
An acquiantance can appear through the disguise of friendship. When shit hits the fan, are they at least respectful enough to say "hey what's going on?". Do they reach out and say " things may be hard right now but with the love and support you have given me, my friend, over the years we can work through and overcome" as friends would do. A true friend would wholeheartedly do the afore mentioned. An acquaintance doesn't pick up the phone to hear for themselves, an acquiantance doesn't shoot an email or text expressing their hurt or concern, an acquaintance simply sits idly by allowing you to hurt, allowing others to defame, attack, verbally beat you down all while either joining in on the mass assault or even worse says nothing at all.
That person is someone who was never a friend to begin with if they can dismiss you like yesterday's garbage without a second thought.
True friends are those who reach out and formulate their thoughts, lend support even if it still means in the end they feel it's best to severe ties with said friendship. The fact is, in all the ugly they loved you enough to tell you personally that they need to step back. They were grateful for all you had given of yourself that they cared enough to respect the need for closure. That is a friend that has deepened a ridge across your heart and your memory so while they aren't present in your physical life, they are forever in your heart in memory of the wonderful moments that your friendship carried through the years.
That acquaintance who turned a blind eye, threw away years of laughs, years of joy, years of tears all in a moment to join the mob hysteria ends up being like a ship passing in the night. Barely a memory because in time it all fades.
Eventually as dust settles and integrity returns to the soul, what's done can't be undone so hopefully the acquiantance can sleep at night feeling as if they did everything they could or at least for the better of themselves.
As for me, I'm a ride or die kind of friend. Unless something was physically done to me, I'll stand by my friends because everyone needs someone in their corner. Those who fail to see that and thrive on the pain of others or take joy in ripping them to shreds only act that way because they are lacking something in their lives. Insecure about their place in the friendships or ungrateful for all the support they received.
Witch hunts happen out of fear and the need to set an example. The actions taken by those who participate in that hunt are far more viscous, hate worthy and despicable than the crime the witch is being convicted of....... Without a fair trial.
Oh and lastly, just an FYI....grieving. People grieve differently. Some get drunk, some stay home quiet, some write, some try and stay busy. In the end if there is nothing you can do about it you can't just sit home and shrivel up and claim defeat. You pull yourself up by your big girl panties and move on. You have a life to live and by sitting home wollowing in self pity you just continue to concede. Instead take the lemons and limes that life handed you and make some kick ass Margaritas and toast life for taking out the things in your life that clearly you had ZERO need for.
ETA: Giggling inside.......just giggling..I <3 trackers
Sent from my iPhone
Subscribe to:
Posts (Atom)