Four years ago a little angel entered my life. I held her tiny 5 Lb. 15 Oz. body in my arms, never realizing how she would turn my whole life upside down. I couldn't know the parade of doctors, specialist, and therapist we'd be seeing so much they became like family. No, what I saw was a blond haired, precious child, who had that sweet fresh baby smell. Sure, I knew something was wrong. I always knew from the day she was born, but I pushed those thoughts away and focused on the little life I'd created. She was and is perfect in every way.
Tomorrow we celebrate Nellie's fourth birthday and so much has happened in the past year. We have the answers we searched for, She starting to express herself, and form real relationships with people. Then there are the things that have never changed. Her smile still lights up my world and washes away all the bad things in life. Getting Nellie cuddles can warm the coldest of days, and when I look at her I know everything is so worth it.
Four year. It's hard to believe that is all it's been since she changed me, made me a better person. It's seemed like a lifetime. I don't know what tomorrow holds and yes, I know the risks, but I pray beyond anything to have another 80 years with her.
My birthday wish for Nellie is that she always keeps her innocence to the bad things in the world. That she never gets down, or allows people to make her feel less than what she is--perfect. Most of all I just want her to keep smiling. Through the pain, through the test, through everything I want her to keep that one thing that lights up my world.
Happy Birthday baby!
Monday, November 15, 2010
Thursday, October 21, 2010
The family of 15's
What I dubbed the family of 15's is the mothers, fathers, siblings, ho have a child in the family with an extra 15th chromosome, and of course the children themselves that have this rare duplication. These families have become my support, hope, friends, understanding, and of course love in the past few months. They have all the qualities of a family even if we have never or will never meet in person.
I have cried at the set backs of these families and relished in the triumphs. I know we were all chosen to be a part of these children's lives by God and each others lives. This has brought us all together and for that I am thankful everyday.
In biblical numerology 15 means: deals with the energy that is found within the acts of divine grace.
This is true of all these families!
I know today's blog is short and it's been a while since I posted, but I was inclined to write this while thinking of a friends little boy today. Keep our children in your hearts they are gifts and have so much to offer the world. Look past their delays and see the sunshine that radiates from them :)
I have cried at the set backs of these families and relished in the triumphs. I know we were all chosen to be a part of these children's lives by God and each others lives. This has brought us all together and for that I am thankful everyday.
In biblical numerology 15 means: deals with the energy that is found within the acts of divine grace.
This is true of all these families!
I know today's blog is short and it's been a while since I posted, but I was inclined to write this while thinking of a friends little boy today. Keep our children in your hearts they are gifts and have so much to offer the world. Look past their delays and see the sunshine that radiates from them :)
Saturday, September 11, 2010
Where we stand
I've been so busy lately it's been hard to find time to post. There have been doctor appointments, more tests to set up, and overall chaos. Janelle's speech is improving at rapid rates and as it does her personality is shining through more and more. God is good and has again answered my prayers. I asked to hear her voice and boy has He provided that! With finding her voice Janelle has also found that she can express her dislikes, her anger, and happiness through words. So we are now going through what most people call the terrible twos, but with a nearly 4 year old. My days consist of saying no Nellie, don't put that in your mouth, ewwwww that's gross, Nellie please put your clothes back on, Janelle don't dump that on the floor, you get the picture.
We have also been shocked to hear her tattling. Oh, I thought I would have one daughter who didn't say mooooooooooom, so and so did this, but alas it has happened. Janelle will be yelling mooooooommmmm, Emma took mine. (This means Emma took something from her). Last night she kept saying Nellie no timeout, no sit in chair. I have to assume she was put in time out at school as she wasn't put in time out here. She can spell her name out loud now too, which is amazing to me since my other children were much older when they did this.
Yes, things have been hectic, crazy, and at times very stressful, yet I hear that voice even when she's tattling and the pride wells up in me. She might as well be reciting Emily Dickenson or Charles Dicken's because to me the words coming from her are sweeter than any poem, what she says is more brilliant than the greatest novel ever written. Even if she is only telling me NO!
We have also been shocked to hear her tattling. Oh, I thought I would have one daughter who didn't say mooooooooooom, so and so did this, but alas it has happened. Janelle will be yelling mooooooommmmm, Emma took mine. (This means Emma took something from her). Last night she kept saying Nellie no timeout, no sit in chair. I have to assume she was put in time out at school as she wasn't put in time out here. She can spell her name out loud now too, which is amazing to me since my other children were much older when they did this.
Yes, things have been hectic, crazy, and at times very stressful, yet I hear that voice even when she's tattling and the pride wells up in me. She might as well be reciting Emily Dickenson or Charles Dicken's because to me the words coming from her are sweeter than any poem, what she says is more brilliant than the greatest novel ever written. Even if she is only telling me NO!
Saturday, August 28, 2010
Just one day
Last night I was talking with a friend I haven't talked to in a while. Life has been getting in the way of phone conversations. I finally let go of everything that has been eating away at me. I am not a brick wall and I am toppling. After 4 years of struggling alone with Nellie's issues, of not allowing anyone to take over any of her care I admitted I need help. For a few minutes I felt like I was failing her. Like I wasn't what I needed to be. I can't go anywhere since no one will babysit Nellie, my life revolves around doctor appointments and I need to get away, just for a little while. I have always felt like if I allowed anyone, even Nellie's father to take over any of her medical stuff they'd mess something up, but it's time.
I had a talk with my mother and she is going to watch Nellie once a month so I can get away. This is going to be a great reprieve for me and I am excited!!! I don't think a lot of people realize what the day to day life is like for a family with a special needs child. It is hectic, busy, crazy, and so wonderful all at the same time. There are more sleepless nights and trips to the ER than most people face in a lifetime. It is our normal. It's our life and perhaps I wouldn't have chosen this life, but I wouldn't change it. I couldn't imagine my world without my Nellie in it.
You may ask what I'm going to do when Nellie goes to stay with my mom for a few hours and the answer is simple. I'm going to take the kids and do something that is hard to do with Nellie. We are going to go to a real restaurant. One with menu's and waiters! One dinner where the kids can sit and talk to us without us having to chase Nellie around the place and try to keep her from yelling. Then when we are done I'm sure I'll be at my mom's to pick her up early because I miss her ;)
I had a talk with my mother and she is going to watch Nellie once a month so I can get away. This is going to be a great reprieve for me and I am excited!!! I don't think a lot of people realize what the day to day life is like for a family with a special needs child. It is hectic, busy, crazy, and so wonderful all at the same time. There are more sleepless nights and trips to the ER than most people face in a lifetime. It is our normal. It's our life and perhaps I wouldn't have chosen this life, but I wouldn't change it. I couldn't imagine my world without my Nellie in it.
You may ask what I'm going to do when Nellie goes to stay with my mom for a few hours and the answer is simple. I'm going to take the kids and do something that is hard to do with Nellie. We are going to go to a real restaurant. One with menu's and waiters! One dinner where the kids can sit and talk to us without us having to chase Nellie around the place and try to keep her from yelling. Then when we are done I'm sure I'll be at my mom's to pick her up early because I miss her ;)
Friday, August 27, 2010
I swear I'm not starving you
Regardless of what Janelle believes i am in fact not starving her. Apparently if not given cookies, candy, froasty freezy freezes, she is starving. For the past week I have been on guard at the kitchen door. She has tried to climb under my legs, push me to the side, and if I go to the bathroom she makes a mad dash for the fridge. We were hoping to avoid putting locks on the fridge and cupboards, but alas we have to.
On the plus side since we rid our house of as much high fructose corn syrup as possible Leanna's ADHD is barely noticable!!!! I had to praise her up and down yesterday and tell her how proud I am. May be soon we will be able to say goodbye to Adderall forever!!!!!!
In conclusion if a short girl, with shoulder length, thin brown hair comes knocking at your door saying cookie, don't give it to her! If a short, skinny, dark haired comes knocking feel free to feed her :)
On the plus side since we rid our house of as much high fructose corn syrup as possible Leanna's ADHD is barely noticable!!!! I had to praise her up and down yesterday and tell her how proud I am. May be soon we will be able to say goodbye to Adderall forever!!!!!!
In conclusion if a short girl, with shoulder length, thin brown hair comes knocking at your door saying cookie, don't give it to her! If a short, skinny, dark haired comes knocking feel free to feed her :)
Monday, August 23, 2010
poopy poopy everywhere
nothing like an end of summer stomach bug o put everyone in a grumpy mood. I feel awful, yet have had to clean up after Nellie and Devony for two days now ewwwww. Since Nellie is basically refusing to use the potty this is even nastier. This whole situation has made my head go into the toilet bowel many times now, gotta love the pregnancy sensitive nose.
I'm so ready for this bug to be gone. I'd say I'm so ready for school to start, but that just brings on another vicious cycle of viruses and germs. Sometimes I feel like I am fighting a never ending battle. Like the germs hide in a corner, wait for me to give the all clear, that our house is illness free, and they form their attack plan. Yes, I see them there snickering at me when I feel like it's okay to relax.
Alright, I better end this blog and arm myself with the can of Lysol spray and paper towels. Everyone wish me luck, if you haven't heard from me in a few weeks the germs won!
I'm so ready for this bug to be gone. I'd say I'm so ready for school to start, but that just brings on another vicious cycle of viruses and germs. Sometimes I feel like I am fighting a never ending battle. Like the germs hide in a corner, wait for me to give the all clear, that our house is illness free, and they form their attack plan. Yes, I see them there snickering at me when I feel like it's okay to relax.
Alright, I better end this blog and arm myself with the can of Lysol spray and paper towels. Everyone wish me luck, if you haven't heard from me in a few weeks the germs won!
Friday, August 20, 2010
Nellie VS the fair.....Nellie won!!!!!!
Yes, I think we very well may have hit the terrible two's, two years late! We decided to take all of the kids to the fair yesterday. People would think it difficult to take 6 kids anywhere, but our kids behave fairly well in public. Anyway Janelle usually enjoys such things, not yesterday!
I'm not sure if it was a case of sensory overload, crankiness or what, but Nell's did not enjoy the fair. Okay, she liked it as long as she was getting her own way. All she wanted to do was ride rides and she had an hour fit about ponies until we finally found them. She had no interest in the animal shows, or just about anything else. Should have seen what happened when she wasn't able to ride a slide cause she was too short. Oh my goodness Nellie went hysterical!
We ended up leaving early, but had been there 6 hours so we were all tired anyway. In the end though, it was worth it just to see her smile the few times she did.
I'm not sure if it was a case of sensory overload, crankiness or what, but Nell's did not enjoy the fair. Okay, she liked it as long as she was getting her own way. All she wanted to do was ride rides and she had an hour fit about ponies until we finally found them. She had no interest in the animal shows, or just about anything else. Should have seen what happened when she wasn't able to ride a slide cause she was too short. Oh my goodness Nellie went hysterical!
Tuesday, August 17, 2010
No parent is alone!!!!
Since I started this blog and have gone down the path of a mother with a disabled child I realized how many parents there are who live like I do. Their lives revolve around fighting for their children, learning, and struggling daily to keep these kids safe, and cared for. Each child is different, each family, and case is different, yet we are one. We are one community of parents who know pain, struggles, disappointment, fear, and wonder. We have felt the devastation of hearing our children are not "normal". I use quotes because one person idea of normal isn't another persons.
Though one mother may struggle with a child who needs feeding tubes another may have to deal with immobility. Does this make the daily struggles different, maybe a little, but in the end these mothers understand each other.
I have dubbed mothers of disabled children multi-abled parents. We have a different language than most other parents. We can talk in numbers, codes, and medical terms. We have a vast knowledge of medicines, surgeries, the best and worst hospitals and doctors. We have a different schedule than most other people. We run on doctor time. This means we are on call 24/7 and can drop anything at any sign of an emergency and stay cool while dealing with it. We are fighters for justice more than any senator or even president. We are willing and able to take on anyone to make sure our children get what they need and their rights are not violated.
In the end what do we get for this life? There is no day set aside for multi-abled mom's. We don't have an awards ceremony, or movies or books made about us. No, what we get is greater than all of these things. We get the love of our children, the joy of knowing we make a difference and most of all we get to belong to a great community of other multi-abled parents who we can share our joy, love, and accomplishments with.
I have enjoyed meeting all of my multi-abled parent superhero friends. You are all a part of me now as are your children. Know that as you would band together for me I will always do the same in return. You all rock!!
Though one mother may struggle with a child who needs feeding tubes another may have to deal with immobility. Does this make the daily struggles different, maybe a little, but in the end these mothers understand each other.
I have dubbed mothers of disabled children multi-abled parents. We have a different language than most other parents. We can talk in numbers, codes, and medical terms. We have a vast knowledge of medicines, surgeries, the best and worst hospitals and doctors. We have a different schedule than most other people. We run on doctor time. This means we are on call 24/7 and can drop anything at any sign of an emergency and stay cool while dealing with it. We are fighters for justice more than any senator or even president. We are willing and able to take on anyone to make sure our children get what they need and their rights are not violated.
In the end what do we get for this life? There is no day set aside for multi-abled mom's. We don't have an awards ceremony, or movies or books made about us. No, what we get is greater than all of these things. We get the love of our children, the joy of knowing we make a difference and most of all we get to belong to a great community of other multi-abled parents who we can share our joy, love, and accomplishments with.
I have enjoyed meeting all of my multi-abled parent superhero friends. You are all a part of me now as are your children. Know that as you would band together for me I will always do the same in return. You all rock!!
Sunday, August 15, 2010
The last week of school
The last week of Nellie's summer session is upon us. She loves school so much and her teacher as well. I'm sure until the fall session starts she's going to be walking around asking why the bus isn't here (I think she has an internal clock that tells her when it's supposed to be here). Thankfully we have a lot planned between then and now and she'll be entertained fully. Still I know each time we pass a bus she'll wonder why she isn't getting on it!
Yo Gabba Gabba Live is on my monkey butt list!!!!!
That's right I have a monkey butt list for bad things and Yo Gabba Gabba Live just made it onto said list. On August 5th I wrote this letter to Yo Gabba Gabba:
I have a few questions about the live show. How is the visibility? And how far from stage would a visually impaired person have to be to see the characters? We are hoping to take our disabled daughter to the show in Lewiston, NY, but this is a big expense and we have to be sure she'll be able to see. It will kill her to go and not see her favorite characters! This will be a great reprieve for her from all the doctors and tests!!! Please let me know so we can order our tickets in a good area as soon as possible. Thank you so much for your time and for creating a show that my daughter loves!
Stephanie Barmann
Today is August 15th and no response!!! Not even an email back to say I have to ask so and so etc. Ten days is plenty of time in which to expect a response and considering the show is September 7th there isn't a whole lot of time to get tickets in an appropriate area for the show.
Of course what do I expect from a Nick television show? We can make sure there are characters of all races, religions etc., but what about the disabled children? Where are the children with autism, the children who are blind, deaf? Oh, I know the general population doesn't want to see the disabled is that it? I bet a major portion of Nick Jr. viewers have disabilities of some sort ADHD, vision, hearing, autism etc.
I am saddened to have not had an answer as my daughter really does love the show and from now on it will NEVER be put on my television again!!!! I know Disney on Ice and similar children's live shows do make arrangements for the visually impaired and handicapped. Again though we go back to Nick. In my opinion it's all about the money isn't it? Let's look at the cost to see Yo Gaba Gaba live:
$105.00 for a meet and greet party with Yo Gabba Gabba (mom, dad, child= $315) Hummm why do I have a feeling hundreds will be at said party?
regular tickets $35 (mom dad, child $105)
$105 is a lot of money for a show my daughter may not be able to see without the right seating and then throw a screaming fit when she can't view her "friend" characters!
Good job Nick for making people believe you care when in fact like everything else in today's world you are out for the money!!!!!
Good luck with Yo Gaba Gaba Live Nick. I'm sure you could care less about losing my families $105 ( make that $140 cause we would have brought baby and Lord knows they would have made us pay for a ticket for an infant too!) Just know that one day parents will become wise and as for me I already have and am hoping my cable company can get rid of the channel completely!!!!
I have a few questions about the live show. How is the visibility? And how far from stage would a visually impaired person have to be to see the characters? We are hoping to take our disabled daughter to the show in Lewiston, NY, but this is a big expense and we have to be sure she'll be able to see. It will kill her to go and not see her favorite characters! This will be a great reprieve for her from all the doctors and tests!!! Please let me know so we can order our tickets in a good area as soon as possible. Thank you so much for your time and for creating a show that my daughter loves!
Stephanie Barmann
Today is August 15th and no response!!! Not even an email back to say I have to ask so and so etc. Ten days is plenty of time in which to expect a response and considering the show is September 7th there isn't a whole lot of time to get tickets in an appropriate area for the show.
Of course what do I expect from a Nick television show? We can make sure there are characters of all races, religions etc., but what about the disabled children? Where are the children with autism, the children who are blind, deaf? Oh, I know the general population doesn't want to see the disabled is that it? I bet a major portion of Nick Jr. viewers have disabilities of some sort ADHD, vision, hearing, autism etc.
I am saddened to have not had an answer as my daughter really does love the show and from now on it will NEVER be put on my television again!!!! I know Disney on Ice and similar children's live shows do make arrangements for the visually impaired and handicapped. Again though we go back to Nick. In my opinion it's all about the money isn't it? Let's look at the cost to see Yo Gaba Gaba live:
$105.00 for a meet and greet party with Yo Gabba Gabba (mom, dad, child= $315) Hummm why do I have a feeling hundreds will be at said party?
regular tickets $35 (mom dad, child $105)
$105 is a lot of money for a show my daughter may not be able to see without the right seating and then throw a screaming fit when she can't view her "friend" characters!
Good job Nick for making people believe you care when in fact like everything else in today's world you are out for the money!!!!!
Good luck with Yo Gaba Gaba Live Nick. I'm sure you could care less about losing my families $105 ( make that $140 cause we would have brought baby and Lord knows they would have made us pay for a ticket for an infant too!) Just know that one day parents will become wise and as for me I already have and am hoping my cable company can get rid of the channel completely!!!!
Saturday, August 14, 2010
Nellie's party
Okay it wasn't really Nellie's party but she thought it was. It was my husbands company picnic and Nellie loved it!!!! We couldn't keep her out of the bounce house and she let us paint her face. This was huge because of her sensory issues. Sara held her hand as the woman did it and she only did a quick heart, but still every little step forward counts! I had to share the pic as she actually looks pretty happy about it!
Wednesday, August 11, 2010
Nellie is so loved
Today I wanted to talk about our home life with Nellie. Many people would assume since Nellie is so high needs the other children get pushed to the wayside. So, not true. In fact the other kids spend so much time with Nellie if anything I get pushed to the wayside! So here is a run down of Nellie's siblings and how she interacts with them:
David- He's the funny guy. A classic big brother he is very protective and Nell's loves to irritate him as much as possible. Usually he laughs, but I know when she jumps on him it has to hurt!!!!!
Sara- Our little mother hen. She will answer to each of Nellie's beck and calls. She will be the first one to Nellie if she falls and gets hurt, or to yell at me if Nellie needs something and I don't move fast enough.
Leanna- Her and Nellie have a very special bond that goes beyond sisterhood. I know deep down they have a connection I'll never fully understand. There is a love there that is impossible to put into words.
Emma- Sometimes I wonder if Emma truly realizes that Nellie is disabled. She plays with her as if she were any other of her siblings. She gets angry with Nellie for breaking something and laughs at Nellie when she's silly.
Devony- At first Nellie wanted nothing to do with her baby sister. The first thing he said about her was: No, no, mommy no touch it. Now she gets a kick out of the fact Devony thinks she's the funniest thing since Rip Torn! She also likes to sneak the baby foods she can not have, another reason I think Devony adores her.
The new baby- I'm not sure Nellie understands there is a baby in mommy's tummy. I asked her if she wanted a new baby sister or brother and she flat out said no, no baby so we shall see!!!!!!
Our house is often full of chaos and laughter. There are moments when I want to hide, but it's in those moments someone does something to make me laugh. If there's one thing I know for sure our children as much as they fight will one day be very close and Nellie will never be lacking for one thing, the most important thing...LOVE!!!!
David- He's the funny guy. A classic big brother he is very protective and Nell's loves to irritate him as much as possible. Usually he laughs, but I know when she jumps on him it has to hurt!!!!!
Sara- Our little mother hen. She will answer to each of Nellie's beck and calls. She will be the first one to Nellie if she falls and gets hurt, or to yell at me if Nellie needs something and I don't move fast enough.
Leanna- Her and Nellie have a very special bond that goes beyond sisterhood. I know deep down they have a connection I'll never fully understand. There is a love there that is impossible to put into words.
Emma- Sometimes I wonder if Emma truly realizes that Nellie is disabled. She plays with her as if she were any other of her siblings. She gets angry with Nellie for breaking something and laughs at Nellie when she's silly.
Devony- At first Nellie wanted nothing to do with her baby sister. The first thing he said about her was: No, no, mommy no touch it. Now she gets a kick out of the fact Devony thinks she's the funniest thing since Rip Torn! She also likes to sneak the baby foods she can not have, another reason I think Devony adores her.
The new baby- I'm not sure Nellie understands there is a baby in mommy's tummy. I asked her if she wanted a new baby sister or brother and she flat out said no, no baby so we shall see!!!!!!
Our house is often full of chaos and laughter. There are moments when I want to hide, but it's in those moments someone does something to make me laugh. If there's one thing I know for sure our children as much as they fight will one day be very close and Nellie will never be lacking for one thing, the most important thing...LOVE!!!!
Monday, August 9, 2010
How hard it is to hear her cry
It is gut wrenching to hear my child scream for food. Yesterday we started to change our eating habits and Nellie is not taking to it. She spotted lunch meat in the fridge and collapsed to the floor in a fit until I threw it out, after all out of sight out of mind. Then the cheese ball fiasco (as it will always be known in my house) began. She saw them on the very top shelf (pretty impressive with a visual impairment) and for over an hour I heard...But mommy cheese balls, cheeeeeesssssssseeeeeee balllllllllsssssss, blended with sobbing and tears. Once it came time for bed she finally calmed, but I swear in the middle of the night echos of the words cheese balls were still floating through the air.
I know she had enough to eat and starvation was in fact not happening, but still it was difficult to know in her mind she was still very hungry. This is going to take some getting used to and hopefully soon she will understand or at the least get used to our new lifestyle!
Oh, and as for the cheese balls they met the same fate as the lunch meat somewhere a pack of sea galls are having a feast of ham and cheese balls thanking me for the changes in my home.
I know she had enough to eat and starvation was in fact not happening, but still it was difficult to know in her mind she was still very hungry. This is going to take some getting used to and hopefully soon she will understand or at the least get used to our new lifestyle!
Oh, and as for the cheese balls they met the same fate as the lunch meat somewhere a pack of sea galls are having a feast of ham and cheese balls thanking me for the changes in my home.
Saturday, August 7, 2010
Metabolic????? WHAT?????
Yes this is what I said to the doctor when he said he believed this is what she has. In fact he believes it so much he has us changing our lifestyles and talked to me for over 45 minutes about this condition! I had began to take the blame for my child's weight, thinking I was feeding her to death or as the genetic doc put it she had a condition known as "motherly love". Wow what a relief to hear her body is just a little off. Still if I allow it to continue it is my fault, therefore big changes are coming to this house hold. I am in search of fridge and cupboard locks. Yes, I know if a few weeks my children will be screaming Attica and claiming to be starving and begging for the treats they have grown accustom to...but no more!!!
I explained to the children how our household will be run from here on out, at least when it comes to the kitchen. No more pizza, good bye McDonald's ours has been a long relationship, so long High fructose syrup you will be missed, so long to everything that will cause my sweet Nellie to grow bigger and unhealthier.
I want to share a little background on Nellie's weight problem. From birth to the age of 2 1/2 she was under weight. She was always sizes behind her peers and pounds behind them too. She had been diagnosed as a baby with a feeding delay and would not eat solid foods. For a long time milk was her major meals. All of the sudden though something changed she began gaining and eating.
This was a vicious cycle that happened so quickly I didn't notice at first. People began to comment about how fat she was getting. My mother would tell me I had to do something with this weight problem as she handed Nellie a cookie. I will from here on out thwart all attempts at sneaking Nell's a treat. I am putting a sign on the door announcing if you have food with you turn around and leave. Her siblings had everything explained to them and understand that yes they are normal weights, but they too must help out and not eat goodies in front of Nell's. They must eat them outside. We do have one child who is extremely underweight and needs the extra calories. This will be interesting to say the least!
I'm hoping in a few months we will see a huge difference in all of us! So watch out healthy lifestyle here we come!
Nellie 4th of July 2009 24 Pounds
I explained to the children how our household will be run from here on out, at least when it comes to the kitchen. No more pizza, good bye McDonald's ours has been a long relationship, so long High fructose syrup you will be missed, so long to everything that will cause my sweet Nellie to grow bigger and unhealthier.
I want to share a little background on Nellie's weight problem. From birth to the age of 2 1/2 she was under weight. She was always sizes behind her peers and pounds behind them too. She had been diagnosed as a baby with a feeding delay and would not eat solid foods. For a long time milk was her major meals. All of the sudden though something changed she began gaining and eating.
This was a vicious cycle that happened so quickly I didn't notice at first. People began to comment about how fat she was getting. My mother would tell me I had to do something with this weight problem as she handed Nellie a cookie. I will from here on out thwart all attempts at sneaking Nell's a treat. I am putting a sign on the door announcing if you have food with you turn around and leave. Her siblings had everything explained to them and understand that yes they are normal weights, but they too must help out and not eat goodies in front of Nell's. They must eat them outside. We do have one child who is extremely underweight and needs the extra calories. This will be interesting to say the least!
I'm hoping in a few months we will see a huge difference in all of us! So watch out healthy lifestyle here we come!
Nellie 4th of July 2009 24 Pounds
Nellie 4th of July 2010 60 Pounds
Friday, August 6, 2010
Amazing!!!!!!!! Prayers are answered
I laugh now thinking how nervous I was for this doctor appointment today. I hate having to hear about how delayed Nellie is and every time we would go I was reminded my child has autism....Guess what.....SHE DOESN'T!!!!!
If ever I have had an affirmation of God today is that day. Again God stepped in and said who is the ultimate doctor here? I have been praying until I could think of nothing or no one left to pray for for weeks. Every time I look at my children I ask God again to help me and He has, oh how He has. A month ago Nellie was put onto the spectrum today she was taken back off. The doctor said with the improvements she's made alone in this small amount of time he had to take her off! Yes she does score in their "tests" as being in the spectrum, but he says shes not. It's truly amazing. And if I sound like I am babbling during this blog I am!! I am giddy, joyful, feeling very blessed right now, so many emotions I can't put them all into words.
Yes, the doctor says this may change in 6 months when she goes back and it may take years before we know for sure if she will be put back on the spectrum, but like I've said me and the Lord, we got an understanding.
Is Janelle better, no not at all, but each good test, good result is one step closer to that point. He also feels she has a few other conditions that will have to be looked into, but you know what I'll stick to my happy little world right now and worry about those things tomorrow. In the words of Scarlett O'Hara after all tomorrow is another day.
All I have left to say is Praise God, you are mighty in your glory and power to heal!!!!!!! I thank Him for blessing me, a sinner and hearing my cries. God You are good, and forever I will be Your servant!
If ever I have had an affirmation of God today is that day. Again God stepped in and said who is the ultimate doctor here? I have been praying until I could think of nothing or no one left to pray for for weeks. Every time I look at my children I ask God again to help me and He has, oh how He has. A month ago Nellie was put onto the spectrum today she was taken back off. The doctor said with the improvements she's made alone in this small amount of time he had to take her off! Yes she does score in their "tests" as being in the spectrum, but he says shes not. It's truly amazing. And if I sound like I am babbling during this blog I am!! I am giddy, joyful, feeling very blessed right now, so many emotions I can't put them all into words.
Yes, the doctor says this may change in 6 months when she goes back and it may take years before we know for sure if she will be put back on the spectrum, but like I've said me and the Lord, we got an understanding.
Is Janelle better, no not at all, but each good test, good result is one step closer to that point. He also feels she has a few other conditions that will have to be looked into, but you know what I'll stick to my happy little world right now and worry about those things tomorrow. In the words of Scarlett O'Hara after all tomorrow is another day.
All I have left to say is Praise God, you are mighty in your glory and power to heal!!!!!!! I thank Him for blessing me, a sinner and hearing my cries. God You are good, and forever I will be Your servant!
Some days I don't feel like writing this
There are some days when I just feel down. I know I always come across as happy and upbeat so today I will share with you what stinks! The things that really get to me. Maybe I am writing this since we have an appointment with the developmental ped today and I always dread those appointments. So here's my list:
It stinks when people look at us funny when we are in public! Seriously one can tell Janelle is disabled why stare at me like I have this out of control child who talks loudly and screams indoors!
It stinks that I watch my child go through so much and struggle daily.
It really stinks that I have more medical knowledge than most first year med students! Okay this may not be all that bad.
It stinks that my older children can recite a list of their sisters medical problems because I taught them in case of emergencies!
Okay that's a shortened list. To be honest my list of things I adore is longer, but on days like today it's harder to see those things. Like a dark cloud has blocked them from view. It's on these days when I want to go hide, but I can't Nellie needs me. Right now she is still sleep and I went in and gazed at her peaceful face. When she's asleep you'd never know there was a thing wrong with her and I like to think when she's asleep in her dreams she can do all the things everyone else can. That she is in a happy little world where she don't need doctors, tests, therapies. You know I think I'm gonna end this early today and go join her for some cuddle time :)
It stinks when people look at us funny when we are in public! Seriously one can tell Janelle is disabled why stare at me like I have this out of control child who talks loudly and screams indoors!
It stinks that I watch my child go through so much and struggle daily.
It really stinks that I have more medical knowledge than most first year med students! Okay this may not be all that bad.
It stinks that my older children can recite a list of their sisters medical problems because I taught them in case of emergencies!
Okay that's a shortened list. To be honest my list of things I adore is longer, but on days like today it's harder to see those things. Like a dark cloud has blocked them from view. It's on these days when I want to go hide, but I can't Nellie needs me. Right now she is still sleep and I went in and gazed at her peaceful face. When she's asleep you'd never know there was a thing wrong with her and I like to think when she's asleep in her dreams she can do all the things everyone else can. That she is in a happy little world where she don't need doctors, tests, therapies. You know I think I'm gonna end this early today and go join her for some cuddle time :)
Thursday, August 5, 2010
Wow Nellie's been around the world!!!!!!!!!!
At least virtually! I am again humbled and amazed at how many follow her story. Here's a list of the countries where people follow Nellie's story:
United States
Canada
China
United Kingdom
Ireland
Australia
Denmark
Germany
Luxembourg (I know who this is NATACHA)
Mexico
Thank you all!!!!
United States
Canada
China
United Kingdom
Ireland
Australia
Denmark
Germany
Luxembourg (I know who this is NATACHA)
Mexico
Thank you all!!!!
Waiting for the bus
I absolutely love waiting for the bus with Nellie. It gives us a chance to be alone and just hang out. I am amazed as I sit and just watch her. Everything seems so fresh and new to her, like seeing everything for the first time. We do spend a lot of time outside, yet when the other kids are out there with us Nell's is often on the run with her siblings. Not o in the morning, she is calm, relaxed, and just seems to enjoy our special moments together.
She picks flowers and looks at them so closely as if memorizing every detail before handing them to me. She chases the neighbors cats, asks about the missing tree for the thousandth time, or just stares up at the sky. Rain is often a bonus as we stand on the porch and she watches the puddles form on the ground.
I can see the beauty of everything I tend to overlook when Nellie points it out. A slight color difference in the flowers, The metal banister she traces with her fingers.
She's like a baby that is learning of the world still. Her wonder and excitement fills me with the same emotions. I have been known to get on my hands and knees with her and trail an ant across the sidewalk, to chase a butterfly across the grass, and even to squirt a hose just right to create a rainbow.
I have no desire to see the pyramids, grand canyon, or the deserts of Africa. I have all the wonder I need right here in Nellie's eyes.
She picks flowers and looks at them so closely as if memorizing every detail before handing them to me. She chases the neighbors cats, asks about the missing tree for the thousandth time, or just stares up at the sky. Rain is often a bonus as we stand on the porch and she watches the puddles form on the ground.
I can see the beauty of everything I tend to overlook when Nellie points it out. A slight color difference in the flowers, The metal banister she traces with her fingers.
She's like a baby that is learning of the world still. Her wonder and excitement fills me with the same emotions. I have been known to get on my hands and knees with her and trail an ant across the sidewalk, to chase a butterfly across the grass, and even to squirt a hose just right to create a rainbow.
I have no desire to see the pyramids, grand canyon, or the deserts of Africa. I have all the wonder I need right here in Nellie's eyes.
Wednesday, August 4, 2010
Did I hear you right, Nellie?
Something amazing has happened!!!! Truly, truly amazing! Nellie is talking. I don't mean just words she's been saying words for a long time, but full sentences that make complete sense! Praise God I understand her!
It started when Nick Jr. went out the other day and she said Mommy, you have to fix this. Today while waiting for the bus she says Mommy, what happened to my tree? (the city cut it down). I said the tree went to Heaven with Grandpa. She says: Well lets go see it lol. This has been going on for three days! It's funny because she repeats the sentences three times and I am as excited the third time she says it than the first. I understand she could regress again, but I pray she don't. Her words are so clear and her meaning is getting across.
This all may seem so silly to get excited about, but for four years I have waited to see a glimpse of what my baby is thinking, to understand the things she tries to tell me. I'll take one or two sentences a day with more joy than if she were reciting physics!!!
I know now for sure God heard me Sunday. He knew I needed to see a miracle and did He ever provide me with one! I know this is a sign from Him that yes everything is going to be just fine!
It started when Nick Jr. went out the other day and she said Mommy, you have to fix this. Today while waiting for the bus she says Mommy, what happened to my tree? (the city cut it down). I said the tree went to Heaven with Grandpa. She says: Well lets go see it lol. This has been going on for three days! It's funny because she repeats the sentences three times and I am as excited the third time she says it than the first. I understand she could regress again, but I pray she don't. Her words are so clear and her meaning is getting across.
This all may seem so silly to get excited about, but for four years I have waited to see a glimpse of what my baby is thinking, to understand the things she tries to tell me. I'll take one or two sentences a day with more joy than if she were reciting physics!!!
I know now for sure God heard me Sunday. He knew I needed to see a miracle and did He ever provide me with one! I know this is a sign from Him that yes everything is going to be just fine!
Tuesday, August 3, 2010
What's lacking in our educational system
This question was running through my head last night and I think I have the answer...love!! Nellie has a teacher who adores her, really, really loves her and I believe in my heart this has made all the difference! Too many teachers now have forgotten they became teachers because they loved the job. They have been jaded by children who are disrespectful and parents who deny their children cause any trouble. You know the parents that say wasn't my kid, or the ones who make excuses, therefore teaching their children they can do and say whatever they want it's not their fault after all!
I have been very blessed that Nell's has ended up in a great school full of loving people and I wonder how our educational system as a whole would be if all teachers and staff were like the ones at Nell's school. I love the fact that when my child's hurt there is someone their to hug her, when she is tired there's someone there to smooth back her hair.
I know, I know they made it "forbidden" for teacher to hug heir students. Another thing that shows how our world has changed when we can't trust those who we trust with our children. It's a sad day in age also when a little boy steals a kiss and gets a sexual harassment suit! Still I believe there are more good, kind teachers out there than ones who have evil intentions and for me I say hug my children if they need it, scold them if they are bad. I have so much respect for teachers an pray above everything that all my children only know teachers who like Nell's truly love them!
I have been very blessed that Nell's has ended up in a great school full of loving people and I wonder how our educational system as a whole would be if all teachers and staff were like the ones at Nell's school. I love the fact that when my child's hurt there is someone their to hug her, when she is tired there's someone there to smooth back her hair.
I know, I know they made it "forbidden" for teacher to hug heir students. Another thing that shows how our world has changed when we can't trust those who we trust with our children. It's a sad day in age also when a little boy steals a kiss and gets a sexual harassment suit! Still I believe there are more good, kind teachers out there than ones who have evil intentions and for me I say hug my children if they need it, scold them if they are bad. I have so much respect for teachers an pray above everything that all my children only know teachers who like Nell's truly love them!
Monday, August 2, 2010
Nellie you're gonna be a big sister again
I told the kids last night and was met with squeals of excitement. Nellie however when told there was a baby in mommy's belly lifted my shirt and pointed out the fact I have a belly button! I wonder if she'll have the same reaction to this baby as she did to Devony. The first thing she said was No touch it mommy lol
Sunday, August 1, 2010
Me and the Lord, we have an understanding
Me and my dear friend have been shooting back and forth the Blues Brother's quotes lately. I find this quote to be more true in my life right now than any other. I truly feel right now like I do have an understanding with the Lord. An understanding is no more than a promise really. An example: I had an understanding with my neighbor that if she took out my garbage I'd walk her dog, we have an understanding.
God said to me and everyone really come lay your troubles on me, let me lessen your load. In return I want you to love Me, honor Me, and live by My word. He's kept his end. On the days I feel like I can't go on, when I haven't had a shower, forgotten to even eat, I go to Him. I say today's been rough, help me get through this and He does. Now I'm not saying that I don't cry. I have wept so much I thought for sure my eyes would go into drought mode and there was nothing left to fall from my eyes, but I turned to Him and He took my tears and wiped them away.
Tonight though I had an awaking, a really huge awakening. So huge in fact I find myself unable to sleep. I was praying and something came to me, something amazing happened. I was free!!!!! I was free of all my fear, pain, worries. God spoke to me and He told me Nellie's going to be fine, everything going on in your life is going to be fine. I gave and am still giving you gifts and you need to work with those gifts and form them into the plan I have set forth. I am thankful, glad, and even excited to accept these gifts and to have an understanding with God. I need to keep my end of the bargain though and make sure these gifts are used for His perfect plan!
To quote once more from the Blues Brother's: I'm on a mission from God!
God said to me and everyone really come lay your troubles on me, let me lessen your load. In return I want you to love Me, honor Me, and live by My word. He's kept his end. On the days I feel like I can't go on, when I haven't had a shower, forgotten to even eat, I go to Him. I say today's been rough, help me get through this and He does. Now I'm not saying that I don't cry. I have wept so much I thought for sure my eyes would go into drought mode and there was nothing left to fall from my eyes, but I turned to Him and He took my tears and wiped them away.
Tonight though I had an awaking, a really huge awakening. So huge in fact I find myself unable to sleep. I was praying and something came to me, something amazing happened. I was free!!!!! I was free of all my fear, pain, worries. God spoke to me and He told me Nellie's going to be fine, everything going on in your life is going to be fine. I gave and am still giving you gifts and you need to work with those gifts and form them into the plan I have set forth. I am thankful, glad, and even excited to accept these gifts and to have an understanding with God. I need to keep my end of the bargain though and make sure these gifts are used for His perfect plan!
To quote once more from the Blues Brother's: I'm on a mission from God!
Saturday, July 31, 2010
The mystery that is you
All my other kids at four were very open with what they thought. Not Nellie though. I can see the little gears in her brain turning, but usually she just ends up telling me something about Sponge Bob or Buses. Nellie loves, loves, loves, buses. We cant go down a street and not have ever bus pointed out while she screams A BUS! Perhaps that is the extent of her worries in life, when she'll see the next bus. How bad could that be! Not terrorist attacks, fires, or illnesses, but simply buses.
There are many mysteries that are Nellie. Like how she can spin and spin and never get dizzy. Why she'll eat ketchup on a McDonald's hamburger, but if it's an anything else she acts like we are trying to poison her. Okay she does kind of get this from me, but my things onions. I can eat them on burgers, but nothing else. I wonder what she finds so fasinating in a spinning bike wheel that it can keep her attention for more than 5 minutes.
Yes, Nellie is a mystery as is the pyrimids, grand canyon. Amilia Earhart's plane. The many things in life that have boggled minds for centuries. She is a puzzle, but one I'm happy to sit and put together.
There are many mysteries that are Nellie. Like how she can spin and spin and never get dizzy. Why she'll eat ketchup on a McDonald's hamburger, but if it's an anything else she acts like we are trying to poison her. Okay she does kind of get this from me, but my things onions. I can eat them on burgers, but nothing else. I wonder what she finds so fasinating in a spinning bike wheel that it can keep her attention for more than 5 minutes.
Yes, Nellie is a mystery as is the pyrimids, grand canyon. Amilia Earhart's plane. The many things in life that have boggled minds for centuries. She is a puzzle, but one I'm happy to sit and put together.
Friday, July 30, 2010
A poem "I understand"
The words you want to say won't come
and fustration sweeps across you face
You have so much you want to say
but it all gets lost along the way
I understand
I know that sometimes people scare you
and people look at you as though you're different
It's ok, there are many people who never will
but those that love you do
They understand
When you're hurt and come to me
I rub your arm
and you look at me
You know I wish I could take your pain away
You understand
When you look upon a bright blue sky
or watch the snowflakes fall
You know these are gifts from God
Just as you were to me
He understands
I know understanding isn't something everone has
and people will sometimes be mean
I know that as you grow kids will laugh at you
and not want to be your friend
They don't understand
But I do
Our family does
Our friends do
and most of all God does.
And in the end those are the people who matter!
There will be time to help so many
come to the point of understanding
If they take just a moment to see you for who you are
they will see everything you have to offer
Then they too will understand!
and fustration sweeps across you face
You have so much you want to say
but it all gets lost along the way
I understand
I know that sometimes people scare you
and people look at you as though you're different
It's ok, there are many people who never will
but those that love you do
They understand
When you're hurt and come to me
I rub your arm
and you look at me
You know I wish I could take your pain away
You understand
When you look upon a bright blue sky
or watch the snowflakes fall
You know these are gifts from God
Just as you were to me
He understands
I know understanding isn't something everone has
and people will sometimes be mean
I know that as you grow kids will laugh at you
and not want to be your friend
They don't understand
But I do
Our family does
Our friends do
and most of all God does.
And in the end those are the people who matter!
There will be time to help so many
come to the point of understanding
If they take just a moment to see you for who you are
they will see everything you have to offer
Then they too will understand!
This is when I wish she could communicate better
My poor Nellie. As many know she has a problem with her foot that makes her walk on the side of it. Well wasn't she spinning in a circle's and fell down. I swear yesterday was the day for children's accidents. Just from a few of my friends yesterday I heard about a bloody lip, a broken arm, and a few scrapes and bruises. So anyway, back to the foot. She must have hit it on the end table when she went down because the only mark I could find was a slight indent on the top of her foot. She screamed though, and Nellie only cries if something really, really hurts.
I debated for an hour whether or not to take her to the er. It wasn't bruising or swelling so my heart told me no she'd be okay. I had someone else look and they said it looked fine too. Still she limped and said my foot, my foot. I tried to ask her to point to where it hurt (to figure out if it was her foot, ankle, heel etc), but to no avail.
These such times are when I wish she could tell me things more clearly. I'm so afraid of her being hurt and not being able to tell anyone where it is that is injured. Or God forbid she gets sick and can't show us where the pain is.
I will say I am getting better at the guessing game with her and if I point to something and say boo boo she will sometimes shake her head no. At least that does help narrow things down!
I debated for an hour whether or not to take her to the er. It wasn't bruising or swelling so my heart told me no she'd be okay. I had someone else look and they said it looked fine too. Still she limped and said my foot, my foot. I tried to ask her to point to where it hurt (to figure out if it was her foot, ankle, heel etc), but to no avail.
These such times are when I wish she could tell me things more clearly. I'm so afraid of her being hurt and not being able to tell anyone where it is that is injured. Or God forbid she gets sick and can't show us where the pain is.
I will say I am getting better at the guessing game with her and if I point to something and say boo boo she will sometimes shake her head no. At least that does help narrow things down!
Thursday, July 29, 2010
A picture for the day :)
I don't have a whole lot to say today....yeah those that know me are saying yeah right, but it's true!!!!
Nellie asleep in her rocking chair!!!!!
Wednesday, July 28, 2010
My fears are not necessarily her fears
At four most children understand rejection, teasing, or even get hurt feelings when someone makes a comment, but not Nellie. In a way I'm thankful she doesn't understand the stares she sometimes gets. I always say how peoples looks bother me and my husband always asks me why. I tell him it just does, but the truth is deeper than that. I know deep down that for the rest of her life there will be people who stare, make comments, or snicker behind her back. No, Nellie may no understand, but I DO!!! She has this innocence about bad things that blocks out the negative people in the world and maybe I need to try to be more like that, but I can't.
It hurts me when people look at her eyes and laugh, it breaks my heart when she does something and people say nasty things. It's the same pain I have when one of my other children recall an instance where they have been teased, their pain is my pain.
I have so many fears for Nellie. I worry about people using her, abusing her, and the care she will receive. What will happen to my sweet angel when the evil in the world pokes out it's head and she just don't understand that this evil wants to harm her?
I understand she'll never be a rocket scientist, but I don't want her to be treated like a child when she's 30. She is capable, perfectly capable of doing many things others do, she just does them differently, or can't communicate as well. I worry about how she'll get around with her vision impairment, I worry if her hearing will go completely. There are so many worries that I harbor it's a miracle I'm still sane (well somewhat sane anyway). Then I look at Nellie and she smiles. She smiles through news stories that scare other children, she smiles through doctor appointments that would send children into fits of horror. She just keeps smiling.
Emma (My six year old) said something recently that really struck a cord. I was crying after Nellie's autism diagnoses and she turned to me and said, but mom Nellie doesn't know there's anything wrong with her and I laughed. She was right. To Nellie she is just like everyone else. She has fun like everyone else (in fact more fun I think). She has likes and dislikes. Her world may be a Little different than ours, but she doesn't know that. In Nellie's world she is "normal" and a big part of me wishes I too could be in that world. I want to live in a place where bad things don't exist. Where the most pain caused by others is a skinned knee from being knocked over. I want to be in a place where I can spin around in a circle until a fit of laughter makes me fall to the floor. A place where I can roll down a hill and play in the mud without any other cares. Yes, this must be a beautiful place and I am lucky to catch a glimpse of it now and then.
Perhaps when I look at things this way my fears should be lessened. Maybe my only fear should be that one day something will crumble this perfect world and she WILL begin to understand what people say, the stares and worst of all the comments. A place where I can sit in a beautiful sunset every night enjoying quietly the beauty of the things around me.
It hurts me when people look at her eyes and laugh, it breaks my heart when she does something and people say nasty things. It's the same pain I have when one of my other children recall an instance where they have been teased, their pain is my pain.
I have so many fears for Nellie. I worry about people using her, abusing her, and the care she will receive. What will happen to my sweet angel when the evil in the world pokes out it's head and she just don't understand that this evil wants to harm her?
I understand she'll never be a rocket scientist, but I don't want her to be treated like a child when she's 30. She is capable, perfectly capable of doing many things others do, she just does them differently, or can't communicate as well. I worry about how she'll get around with her vision impairment, I worry if her hearing will go completely. There are so many worries that I harbor it's a miracle I'm still sane (well somewhat sane anyway). Then I look at Nellie and she smiles. She smiles through news stories that scare other children, she smiles through doctor appointments that would send children into fits of horror. She just keeps smiling.
Emma (My six year old) said something recently that really struck a cord. I was crying after Nellie's autism diagnoses and she turned to me and said, but mom Nellie doesn't know there's anything wrong with her and I laughed. She was right. To Nellie she is just like everyone else. She has fun like everyone else (in fact more fun I think). She has likes and dislikes. Her world may be a Little different than ours, but she doesn't know that. In Nellie's world she is "normal" and a big part of me wishes I too could be in that world. I want to live in a place where bad things don't exist. Where the most pain caused by others is a skinned knee from being knocked over. I want to be in a place where I can spin around in a circle until a fit of laughter makes me fall to the floor. A place where I can roll down a hill and play in the mud without any other cares. Yes, this must be a beautiful place and I am lucky to catch a glimpse of it now and then.
Perhaps when I look at things this way my fears should be lessened. Maybe my only fear should be that one day something will crumble this perfect world and she WILL begin to understand what people say, the stares and worst of all the comments. A place where I can sit in a beautiful sunset every night enjoying quietly the beauty of the things around me.
Tuesday, July 27, 2010
The voice of understanding
For two days I have been talking to a mother who understands, truly understands. I can't tell you how good that feels. There is a relief to have someone who can answer my questions, lessen my fears, and generally just laugh with. I want to thank her (you know who you are).
For so many years I have been on what I'll describe as a darkened path. As the tests began coming back a bit more light shone through, but still not enough to see the dangers and pitfalls. By finding just one other person It was like the light switch was turned on and I could see there was actually two paths. One led me toward the darkness again. That place of self pity, and why mes. The other led to a beautiful field filled with wild flowers where people stood waiting to tell me, Hey, it's going to be okay. Let me show you how to get past these obstacles and what lies beyond is even better than what you see here.
I have to thank modern technology for bring together people who may have never had the light bulb turned on and the places that help bring them together. These are the road signs with the arrows and all we have to do is follow them. Once in a while though we have to stop and ask directions so that one day we'll be the ones with the voice of understanding, the guides that lead someone into the light!
For so many years I have been on what I'll describe as a darkened path. As the tests began coming back a bit more light shone through, but still not enough to see the dangers and pitfalls. By finding just one other person It was like the light switch was turned on and I could see there was actually two paths. One led me toward the darkness again. That place of self pity, and why mes. The other led to a beautiful field filled with wild flowers where people stood waiting to tell me, Hey, it's going to be okay. Let me show you how to get past these obstacles and what lies beyond is even better than what you see here.
I have to thank modern technology for bring together people who may have never had the light bulb turned on and the places that help bring them together. These are the road signs with the arrows and all we have to do is follow them. Once in a while though we have to stop and ask directions so that one day we'll be the ones with the voice of understanding, the guides that lead someone into the light!
Nellie is a gift from God!!!!! She is!!!!
And I have proof :) Here is what the bible says about being disabled:
2 Corinthians 12:9
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.
Romans 5:3-5
More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us.
1 Peter 4:1 ESV
Since therefore Christ suffered in the flesh, arm yourselves with the same way of thinking, for whoever has suffered in the flesh has ceased from sin,
,
I save the best for last:
Exodus 4:11
Then the Lord said to him, “Who has made man's mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the Lord?
Repeat hat last verse. That's right the Lord has made her with His perfect plan in mind. I am trying my best with this blog and other means to do what I think God's plan is, to reach out to other families. To hug them, pray for them, whether or not we have ever or will ever meet. In my heart I believe He wants me to spread the word you are not alone.
It's my faith that has given me my strength to get through everything. Yes, it would be easier to pick up a bottle of booze and drown away all the pain, to hide from the fears I have for Janelle, it takes so much more strength to say I trust you God. I know You have blessed me with my child for a reason and I except this gift and will use this gift to do what it is You want me to.
I'll end the blog with this. The bible says:
And calling to him a child, he put him in the midst of them and said, “Truly, I say to you, unless you turn and become like children, you will never enter the kingdom of heaven. Whoever humbles himself like this child is the greatest in the kingdom of heaven. “Whoever receives one such child in my name receives me, but whoever causes one of these little ones who believe in me to sin, it would be better for him to have a great millstone fastened around his neck and to be drowned in the depth of the sea.
(Matthew 18:2-6 ESV)
So now ask me again how I can believe in a God who makes a child like Janelle and I say again, HOW CAN I NOT!
2 Corinthians 12:9
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.
Romans 5:3-5
More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us.
1 Peter 4:1 ESV
Since therefore Christ suffered in the flesh, arm yourselves with the same way of thinking, for whoever has suffered in the flesh has ceased from sin,
,
I save the best for last:
Exodus 4:11
Then the Lord said to him, “Who has made man's mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the Lord?
Repeat hat last verse. That's right the Lord has made her with His perfect plan in mind. I am trying my best with this blog and other means to do what I think God's plan is, to reach out to other families. To hug them, pray for them, whether or not we have ever or will ever meet. In my heart I believe He wants me to spread the word you are not alone.
It's my faith that has given me my strength to get through everything. Yes, it would be easier to pick up a bottle of booze and drown away all the pain, to hide from the fears I have for Janelle, it takes so much more strength to say I trust you God. I know You have blessed me with my child for a reason and I except this gift and will use this gift to do what it is You want me to.
I'll end the blog with this. The bible says:
And calling to him a child, he put him in the midst of them and said, “Truly, I say to you, unless you turn and become like children, you will never enter the kingdom of heaven. Whoever humbles himself like this child is the greatest in the kingdom of heaven. “Whoever receives one such child in my name receives me, but whoever causes one of these little ones who believe in me to sin, it would be better for him to have a great millstone fastened around his neck and to be drowned in the depth of the sea.
(Matthew 18:2-6 ESV)
So now ask me again how I can believe in a God who makes a child like Janelle and I say again, HOW CAN I NOT!
Leanna says......
I need to post about her today. So her wish is my command (You don't want to see what happens if Leanna doesn't get her own way!!!!!). Leanna is number 3 of our six. She struggles daily with ADHD and ODD. She is very short for her age and if I could eat as much as her and stay as skinny as her well I wouldn't worry about the diets I never manage to start.
Leanna and Nellie are very close. Leanna is the first to say when I grow up I'm going to take care of Nellie. When Nellie was a baby Leanna insisted upon changhing her diapers and as she grew Leanna never complained about Nell's touching and or taking her stuff.
Leanna is known as our Nonie Monster cause she always climbed on everything (She ould literally climb the doorways of our house at a year and a half old). When people say you have your hands full, usually they had just met Leanna.
As much as she can drive me insane and get into things she shouldn't she's my baby girl and I love her more than words can ever express. My life would be rather boring without her in it.
Leanna I love ya girl! I hope you like this blog Sweetie :)
Leanna and Nellie are very close. Leanna is the first to say when I grow up I'm going to take care of Nellie. When Nellie was a baby Leanna insisted upon changhing her diapers and as she grew Leanna never complained about Nell's touching and or taking her stuff.
Leanna is known as our Nonie Monster cause she always climbed on everything (She ould literally climb the doorways of our house at a year and a half old). When people say you have your hands full, usually they had just met Leanna.
As much as she can drive me insane and get into things she shouldn't she's my baby girl and I love her more than words can ever express. My life would be rather boring without her in it.
Leanna I love ya girl! I hope you like this blog Sweetie :)
One step forward one step back
Nellie potty trained in March. I was so thankful to her school since I truly believe it was the positive reinforcement she got there since they took all the kids at once. You know monkey see monkey do. Well anyway I was thrilled lol. No more diapers for a 60 pound kid (which by the way are not easy to find!). So fast forward 4 months and now what is Nellie doing...that's right the floor is her bathroom. She will only pee in the potty. This is one time I am thankful she has hard stools! Not only this, but she is peeing at night,which she hadn't been doing. She used to wake up screaming until one of us got up to take her. Not anymore now she just pees my bed.
It feels funny asking an almost four year old why they pooped on the floor, though I know she won't answer I still ask. It's as bad as me having to constant remind a few of the kids that we must wear clothes it's improper to walk around naked all the time! Again not something I thought I'd be saying everyday.
I titled this one step forward one step back since that seems to be how things go for Janelle. She is doing better in some areas and every time that happens she regresses in others. Why oh why does it have to be the use of the potty she's regressing on???????
It feels funny asking an almost four year old why they pooped on the floor, though I know she won't answer I still ask. It's as bad as me having to constant remind a few of the kids that we must wear clothes it's improper to walk around naked all the time! Again not something I thought I'd be saying everyday.
I titled this one step forward one step back since that seems to be how things go for Janelle. She is doing better in some areas and every time that happens she regresses in others. Why oh why does it have to be the use of the potty she's regressing on???????
Monday, July 26, 2010
The strongest people
The strongest people in life are not those who can life the most weight. They are not the people who look at the sadness in the world and never shed a tear. No the strongest people are some of the smallest, some of the most overlooked, the people you pass everyday and never think about. Yes, the strongest people are hidden in the wold and it's time the spotlight is on them.
I see strength in the eyes of the children and adults who struggle everyday to do the things most take for granted. I see power in the child who sits in a wheelchair on the sidelines cheering on the other kids, while deep down he wishes he was one of them. I see brawn in the mind of a person who has never laid eyes on a sunset, yet can live as freely as us with perfect sight. As I have began making my rounds in the world of disabilities I realize now the vast differences in people and the challenges they live with.
To the families who deal with the challenges along side their family member you too have more strength than you will ever know. You deal with the looks, the snide comments, and yes even laughter. You hold your head high knowing the rude people in the world will never know love like you do. If a person goes through life never seeing a storm, never feeling wind so strong they are nearly blown over, well r world is always perfect, sunny. Then one day the wind comes and everything they have ever known is destroyed. They cry, they scream at God for answers. Everything is just gone. Families who have been through the storm, they won't get blown over. Their lives stand perfectly tall and straight as they had before the storm They know that though the rain is falling now, soon the sun will shine again.
Us families of disabled children understand each other in a way no one else can. We can talk in medical jargon, know every hospital within 100 mile radius, and can carry a list of conditions and medicines in our head. We are nurses, doctors, support systems. We compare stories as pregnant woman do. We share what has worked for us, or what hasn't. We all belong to a large family that spans around the world.
I know for me when I am in a doctors office and I see another child with autism, or vision issues, or numerous other problems I can talk to this person as if I've known them my whole life. In most cases our children have seen many of the same doctors or had any of the same tests and for a moment I feel a whole lot less alone. I can see in the eyes of this other mother the pain that comes with years of searching, the mourning for what could have been, the wonder at what could have been differently. Above all those other emotions though, I see the strength of a person who would die for their child, would fight to the end for their child, and above all love a child and believe in a child that the world seems to want to cast off. I hear you, I'm with you, and forever I will stand beside you.
I see strength in the eyes of the children and adults who struggle everyday to do the things most take for granted. I see power in the child who sits in a wheelchair on the sidelines cheering on the other kids, while deep down he wishes he was one of them. I see brawn in the mind of a person who has never laid eyes on a sunset, yet can live as freely as us with perfect sight. As I have began making my rounds in the world of disabilities I realize now the vast differences in people and the challenges they live with.
To the families who deal with the challenges along side their family member you too have more strength than you will ever know. You deal with the looks, the snide comments, and yes even laughter. You hold your head high knowing the rude people in the world will never know love like you do. If a person goes through life never seeing a storm, never feeling wind so strong they are nearly blown over, well r world is always perfect, sunny. Then one day the wind comes and everything they have ever known is destroyed. They cry, they scream at God for answers. Everything is just gone. Families who have been through the storm, they won't get blown over. Their lives stand perfectly tall and straight as they had before the storm They know that though the rain is falling now, soon the sun will shine again.
Us families of disabled children understand each other in a way no one else can. We can talk in medical jargon, know every hospital within 100 mile radius, and can carry a list of conditions and medicines in our head. We are nurses, doctors, support systems. We compare stories as pregnant woman do. We share what has worked for us, or what hasn't. We all belong to a large family that spans around the world.
I know for me when I am in a doctors office and I see another child with autism, or vision issues, or numerous other problems I can talk to this person as if I've known them my whole life. In most cases our children have seen many of the same doctors or had any of the same tests and for a moment I feel a whole lot less alone. I can see in the eyes of this other mother the pain that comes with years of searching, the mourning for what could have been, the wonder at what could have been differently. Above all those other emotions though, I see the strength of a person who would die for their child, would fight to the end for their child, and above all love a child and believe in a child that the world seems to want to cast off. I hear you, I'm with you, and forever I will stand beside you.
When I am gone and siblings oh my
After Nellie's new diagnoses my mother said: Well you better start thinking about her care after you're gone. Little did she know that was something I'd already thought about over and over. I think all parents regardless of if their child is disabled or not. We do have a guardian picked out, but if our other children are old enough we hope and pray one of them would also take care of their sister. The last thing I ever want to happen would be for her to be taken away from her family and put into a home.
I have no doubt that one of Nellie's siblings would take her, why, because they adore her. I grew up with a disabled sister and my mother basically threw me to the side. I was determined not to allow that to happen in my house. The other children have always understood Nellie and the things that are "wrong" with her have been explained thoroughly to the best of our abilities. The understand she may not always be able to do things other people do and they always baby her because of this. They are gentle, patient, and very kind to her. They take her under their wings and will help her find a way to join in their activities.
Yes, my children get disappointed at times when we can't do something because Nellie can't handle it, or if we have to leave somewhere because Nellie got sick, but they always rub her back or hands(Th only two places they can touch on her) and tell her it's okay.
I think it's important as a parent that each child feels special and loved and it is because my children are they are so excepting. In fact my two middle daughters look forward to hospital trips so they can ride the elevators. All of our lives have changed in four years, but where my kids may fight, argue and generally just torment each other they don't Nellie and when it comes down to it they rally together for the good of the family.
I worry that our blood tests will come back me and Dave are the carriers and a few of our other children have this condition as well. I am thankful they are not as effected as Janelle and I'm glad their lives will be easier than hers. But what I am most glad about is they will always love their sister.
I have been witness to many occasions of love poking it's head out from them. Leanna who weighs more than 15 pounds less then Nellie will let he sister climb on her back and give her a piggy back ride. David will sit next to her and watch TV shows made for a three year old. Sara just yesterday watched her sister at a park so she could play longer. Emma will play barbies and never complain when Nellie steals them. It even seems Devony realizes something and sits and laughs at her sister. It warms my heart to know how much love is in this house. I am sure it oozes out the windows and flows across the neighborhood at times.
So I am sure when my time comes the only fighting between the siblings will be who Nellie is going to live with. I know they like us ill be thankful to feel the love and happiness in their households and with their children :)
I have no doubt that one of Nellie's siblings would take her, why, because they adore her. I grew up with a disabled sister and my mother basically threw me to the side. I was determined not to allow that to happen in my house. The other children have always understood Nellie and the things that are "wrong" with her have been explained thoroughly to the best of our abilities. The understand she may not always be able to do things other people do and they always baby her because of this. They are gentle, patient, and very kind to her. They take her under their wings and will help her find a way to join in their activities.
Yes, my children get disappointed at times when we can't do something because Nellie can't handle it, or if we have to leave somewhere because Nellie got sick, but they always rub her back or hands(Th only two places they can touch on her) and tell her it's okay.
I think it's important as a parent that each child feels special and loved and it is because my children are they are so excepting. In fact my two middle daughters look forward to hospital trips so they can ride the elevators. All of our lives have changed in four years, but where my kids may fight, argue and generally just torment each other they don't Nellie and when it comes down to it they rally together for the good of the family.
I worry that our blood tests will come back me and Dave are the carriers and a few of our other children have this condition as well. I am thankful they are not as effected as Janelle and I'm glad their lives will be easier than hers. But what I am most glad about is they will always love their sister.
I have been witness to many occasions of love poking it's head out from them. Leanna who weighs more than 15 pounds less then Nellie will let he sister climb on her back and give her a piggy back ride. David will sit next to her and watch TV shows made for a three year old. Sara just yesterday watched her sister at a park so she could play longer. Emma will play barbies and never complain when Nellie steals them. It even seems Devony realizes something and sits and laughs at her sister. It warms my heart to know how much love is in this house. I am sure it oozes out the windows and flows across the neighborhood at times.
So I am sure when my time comes the only fighting between the siblings will be who Nellie is going to live with. I know they like us ill be thankful to feel the love and happiness in their households and with their children :)
Sunday, July 25, 2010
I am humbled
I can't get over how many people are following Nellie's journey. Sometimes I am surprised people know who I am talking about since her name is Janelle, but I call her Nellie or Nell bells. It shows me how many of you care about and love Nellie. Some of you have been part of my life since I was pregnant with her and joined an expecting club that brought so many new friends into my world. You guys have been part of her story from her first diagnoses of visual impairment and listened as I cried about it. You were all there when one thing after another happened to her. Some of you have met her at our group meet ups and fell in love with her as well. You have held her, hugged her, never looked at her as if she were a sideshow. Jenni a special thanks and much love to you for your tireless research throughout the years. Your friendship and support has meant more to me than you'll ever know, and not only for the Nellie but my other children as well. Have I told you lately you rock?
To my Lil Acorn mommies you are all only a year and a half into my journey with Nellie but you all rock as well. Man, a lot of people rock tonight. Again some of you have had the pleasure of meeting Nellie. It seems like my little Nell Bells has Friends all over the country too!
My church family: Above all I must thank you all. Christy for taking Nell's into the bigger kids group because you like me knew she could do it. The people there who ask about her health and listen as I go on and on. Again thank you for not only being there with Janelle but for wiping away my tears when I finally burst out crying when Devony was getting sick. You are indeed my family too and I'm so glad Nell's will get to grow up surrounded by so many wonderful people.
Most of all I thank the people who have never spoken to me or even knew about Janelle until just recently. I am honored you care and glad people are learning about this condition. If it inspires even one person to not give up looking for answers then I've succeeded.
I also have to thank My Lord and Savior for blessing me with a beautiful little girl who He knew would bring so many together and bring joy into thousands of lives. I know He has a plan. I'm glad you all will get to be there to watch it unfold with me.
((HUGS))
I also want to add anyone who has any questions feel free to email me at: theremustbmore@aol.com
To my Lil Acorn mommies you are all only a year and a half into my journey with Nellie but you all rock as well. Man, a lot of people rock tonight. Again some of you have had the pleasure of meeting Nellie. It seems like my little Nell Bells has Friends all over the country too!
My church family: Above all I must thank you all. Christy for taking Nell's into the bigger kids group because you like me knew she could do it. The people there who ask about her health and listen as I go on and on. Again thank you for not only being there with Janelle but for wiping away my tears when I finally burst out crying when Devony was getting sick. You are indeed my family too and I'm so glad Nell's will get to grow up surrounded by so many wonderful people.
Most of all I thank the people who have never spoken to me or even knew about Janelle until just recently. I am honored you care and glad people are learning about this condition. If it inspires even one person to not give up looking for answers then I've succeeded.
I also have to thank My Lord and Savior for blessing me with a beautiful little girl who He knew would bring so many together and bring joy into thousands of lives. I know He has a plan. I'm glad you all will get to be there to watch it unfold with me.
((HUGS))
I also want to add anyone who has any questions feel free to email me at: theremustbmore@aol.com
Saturday, July 24, 2010
Bite me Mommy
Now I know that title brought on a few giggles ;) I had to tell everyone about Nellie's favorite game Bite me Mommy! This started innocent enough, never did I imagine the pain and daily torment this game would bring to the lives of those in my household who now live in daily fear of this game. When my kids were little I would pretend to bite the inner area of their elbows. They are all very ticklish there and they'd laugh and I'd say mmm... that's a good chicken wing.
Nellie has come to take this game very seriously. Me or one of the kids will be sitting around minding our own business and wham Nellie comes out of nowhere and yells I'm gonna bite you and before there is a moment to react she latches on with those huge chompers!!! These attacks are responded with a huge yell from the victim. Problem is Nellie doesn't understand when someone is hurt so she thinks these yells of pain are the greatest thing ever. She laughs hysterically and proceeds to yell Bite me Mommy!
Needless to say I have tried repeatedly to end this game of Bite me Mommy to no avail. Just when I think she has lost interest in it I get a big bruise on the thigh!
There is hope she has taken to now poking people very hard and yelling Tag you're it! Other than a few pokes in the eyes, scratches, and in a bit of over excitement she's knocked a few people down, but all in all much safer than Bite me Mommy.
(Notice I said Bite me Mommy as many times as possible during this blog lol)
Nellie has come to take this game very seriously. Me or one of the kids will be sitting around minding our own business and wham Nellie comes out of nowhere and yells I'm gonna bite you and before there is a moment to react she latches on with those huge chompers!!! These attacks are responded with a huge yell from the victim. Problem is Nellie doesn't understand when someone is hurt so she thinks these yells of pain are the greatest thing ever. She laughs hysterically and proceeds to yell Bite me Mommy!
Needless to say I have tried repeatedly to end this game of Bite me Mommy to no avail. Just when I think she has lost interest in it I get a big bruise on the thigh!
There is hope she has taken to now poking people very hard and yelling Tag you're it! Other than a few pokes in the eyes, scratches, and in a bit of over excitement she's knocked a few people down, but all in all much safer than Bite me Mommy.
(Notice I said Bite me Mommy as many times as possible during this blog lol)
Friday, July 23, 2010
Ride the bullet Nellie!!
Have you ever seen the Steven King movie Ride The Bullet? Basically it about a person having to make a choice between living and dying. Nellie was the person who fought to live. More than 50% of miscarriages occur because of chromosome abnormalities more than 50%!!!!!!!!! 5% of miscarriages are caused by single umbilical artery. Nellie had both of these things. She had more than a 55% higher risk of miscarriage. She had a greater chance of being a boy than survival. All I can think of is when the weather man says there is a 50% chance of rain. I compare it this way. If a drop of rain had fallen Nellie would have died, thank God the sun kept on shining!
Nellie fought to live, just as she fights to learn, to do the things they said she couldn't. She thrives, grows (A lot), learns. Everyday she shocks me with the knowledge she has gained. When she was almost three they did an IQ test that said hers was only 70! Boy, she proved them wrong.
I'm so proud of every accomplishment and every milestone. I wish sometimes I rode the bullet like she has. So many times things in life have looked so bleak. I've heard stories of people trying to end it or succeeding in their attempts and I think man, if only they knew Nellie. How could someone want to die when someone so little fought so hard to live? I'm reminded of a woman I met when I was pregnant with Devony and I won't name her but just say her baby was in my expecting club. This little baby was born so sick she spent months in the hospital. She could have died so many times. In fact there was a good chance she would die. That baby too rode the bullet. Everyday there are babies riding the bullet. They do the one thing so many are afraid to do...they live!!!!!
I suppose it sounds weird to compare babies to a Steven King movie, but in this case I must. If you haven't seen the movie watch it and you'll understand. I'm happy to say now I gladly throw my fears to the side and I too am riding the bullet and doing so with my arms up in the air, screaming with joy!
I know you love me, Nellie
I know you love me, Nellie. Though you may not want to hug and kiss. I see the love in your eyes when you look at me in the morning. When your tired at night and laying beside me the love emanates off of you and flows into me. Yes, I understand when you say love you too it is just an automatic response, but it's not the words that tell me how you feel. It's the way your face brightens when you get off the bus. It's when I am sad and you pat my leg though I know you don't like to touch. It's the way you surprise me some days and climb up in my lap. I know you love me, Nellie. I know this because you will put your arms around me for a few seconds when I say give me a hug, even if you face twists up in a look of disgust. Mommy knows hugs don't feel good for you. You don't have to tell me you love me Nellie. I can see it everyday. I don't care what I've read or what people say I know you and it's because of that I know their wrong. You feel love, and sadness, and anger, and yes even disappointment. Maybe you don't express them the same, but mommy always knows. I know when your sad cause your lips pokes out and you look down at the ground. I know when your angery cause your eyes get all squinty like your fathers. I know when your disappointed because you mope around. Yes, Nellie mommy don't need the words. In the end words are just that...words. They are not the smiles, the moments when you surprise me. They are not the feelings you invoke in others just by being near them. Words can't replace that instinct in you that tells when someone needs to laugh. Oh and how you make me laugh. I know you love me Nellie and I will always love you too, even if you don't understand when I say it you feel it the same way I do!
Ask and you shall recieve and have a little tact
I've had people writing to me asking exactly what is wrong with Janelle. She is what is known as multi disabled. The list is long and some of the conditions are not known by many people so I will try to make the list as simple as possible. Trust me I had a lot to learn with some of these terms too. I will list the symptoms of each condition as well in case anyone'schild has something similar.
Her first dx at 3 months was Nystagmus since then she's had three other eye conditions added.
Nystagmus is characterized by involuntary, repeated oscillations of one or both eyes, and the disorder often affects the nerves behind the eye and not the eye itself. Movements may be horizontal, vertical, circular, or a combination of various motions and speeds. Nystagmus affects people in varying ways and degrees. Although most affected people view objects as stationary because the brain is thought to make the necessary adjustments, many often have reduced acuity because of the challenge to maintain a fixed focus. People with nystagmus tend to see objects in lower contrast, and many experience problems with depth perception that affect balance and coordination. Some of those affected with the disorder tilt their heads or display nodding to compensate for the impairment or symptoms.
You may notice in older pics of Janelle she held her head to the left side.
http://www.visionrx.com/library/enc/enc_nystagmus.asp
Diagnoses number two was delays in all areas. She began receiving speech, OT, and vision at home.
In Janelle' case her OT was because she didn't hit any of her milestones for about 6 months after she should. When she started ot she was pretty much on a newborn level for many skills. Speech delays were noticed because he didn't cry, smile, wave, babble etc and vision was for her visual impairments.
Third was a feeding delay and severe eczema, and SPD
She didn't eat solid food until she was almost 2!!!! We had a special way of putting the spoon in her mouth to get her to take some baby food. She cried whenever she was forced to touch anything gooey like shaving cream, glue, loved light, resisted touch etc etc. She also had eczema so bad her skin would bleed.
fourth tight right foot adductor muscle
She stands on the side of her foot. It was at this point she was also dx'ed with bow legs which turned out to be knock knees.
fifth severe asthma
She's had 3 major attacks in the last year and a half she had her adenoids out in the spring but it didn't help.
sixth more delays and hearing loss this is when she got a private aide
She now receives PT as well because she doesn't jump off things, has trouble on stairs . The aide helps her to not make good her escape and to give her one on one for teacher led activities.
seventh PDD-NOS (Likely to be changed)
This is a new DX and she may be moved into a different autism spectrum category
And now Chromosome abnormalities. Which in the end caused everything.
The chromosome abnormalities doesn't have a name. Her genetic doc put it this way she has extra on chromosome 15 and missing part of chromosome 19. He said it is rare to have both of these at the same time. Not unheard of just rare.
I'm sure there have been other things I have missed because there have been things they said she had that turned out not to be the case. This list may seem long and people may say how did you deal with so much. To that I say it has been a slow process. These things were not diagnosed all at once. Itwas one thing after another over almost four years. At one point I asked is she ever going to get a negative test?
I also want to add that people have been cautious about asking me questions about Janelle. If we are in public you can tell someone wants to ask something, but they don't. I have also had friends apologize for asking me about her conditions. Please don't feel like you can't ask or that it's rude. I want people to ask. I want people to understand what is wrong with her and not fear it. Trust me after people spend a little while with Nellie they forget all about the fact she is disabled. What I do find offensive is when people make comments. The worst was when she was a baby and people would look at her and say oh my what's wrong with her eyes with that shocked disgusted sound in their voice. Please have a little tact. Ask instead I notice her eyes shake what causes that? In other words think before you word your sentences. If my younger children can do this so can adults. For example we saw a young girl who had a bone condition on our last trip to the hospital and my six year old did notice this girl immediately. Her response was mommy was that little girl born that way? I say yes I believe she was. Emma says mommy that chair looks like a lot of fun do you think she races in it? I said I don't know go ahead and ask her. Being shy Emma didn't.Never once did they make the little girl feel like a side show.
There are proper ways to approach the parent of a disabled child. If you're not sure the right way imagine that child was yours and think of how you would want someone to ask. I guess in a way it's easier for me having been in those shoes.
I'll finish this blog today with one simple request. Teach your children from a young age about disabilities. Try to put them in situations where they will be exposed to people who have disabilities. Young children may embarrass you at first and ask some outlandish questions or even show their shock. After talking to other disabled adults I have learned when children do these things it's not hurtful to them. In fact many will talk to the children and explain things in a way they'll understand. It's by teaching your children that they learn understanding and acceptance!
Her first dx at 3 months was Nystagmus since then she's had three other eye conditions added.
Nystagmus is characterized by involuntary, repeated oscillations of one or both eyes, and the disorder often affects the nerves behind the eye and not the eye itself. Movements may be horizontal, vertical, circular, or a combination of various motions and speeds. Nystagmus affects people in varying ways and degrees. Although most affected people view objects as stationary because the brain is thought to make the necessary adjustments, many often have reduced acuity because of the challenge to maintain a fixed focus. People with nystagmus tend to see objects in lower contrast, and many experience problems with depth perception that affect balance and coordination. Some of those affected with the disorder tilt their heads or display nodding to compensate for the impairment or symptoms.
You may notice in older pics of Janelle she held her head to the left side.
http://www.visionrx.com/library/enc/enc_nystagmus.asp
Diagnoses number two was delays in all areas. She began receiving speech, OT, and vision at home.
In Janelle' case her OT was because she didn't hit any of her milestones for about 6 months after she should. When she started ot she was pretty much on a newborn level for many skills. Speech delays were noticed because he didn't cry, smile, wave, babble etc and vision was for her visual impairments.
Third was a feeding delay and severe eczema, and SPD
She didn't eat solid food until she was almost 2!!!! We had a special way of putting the spoon in her mouth to get her to take some baby food. She cried whenever she was forced to touch anything gooey like shaving cream, glue, loved light, resisted touch etc etc. She also had eczema so bad her skin would bleed.
fourth tight right foot adductor muscle
She stands on the side of her foot. It was at this point she was also dx'ed with bow legs which turned out to be knock knees.
fifth severe asthma
She's had 3 major attacks in the last year and a half she had her adenoids out in the spring but it didn't help.
sixth more delays and hearing loss this is when she got a private aide
She now receives PT as well because she doesn't jump off things, has trouble on stairs . The aide helps her to not make good her escape and to give her one on one for teacher led activities.
seventh PDD-NOS (Likely to be changed)
This is a new DX and she may be moved into a different autism spectrum category
And now Chromosome abnormalities. Which in the end caused everything.
The chromosome abnormalities doesn't have a name. Her genetic doc put it this way she has extra on chromosome 15 and missing part of chromosome 19. He said it is rare to have both of these at the same time. Not unheard of just rare.
I'm sure there have been other things I have missed because there have been things they said she had that turned out not to be the case. This list may seem long and people may say how did you deal with so much. To that I say it has been a slow process. These things were not diagnosed all at once. Itwas one thing after another over almost four years. At one point I asked is she ever going to get a negative test?
I also want to add that people have been cautious about asking me questions about Janelle. If we are in public you can tell someone wants to ask something, but they don't. I have also had friends apologize for asking me about her conditions. Please don't feel like you can't ask or that it's rude. I want people to ask. I want people to understand what is wrong with her and not fear it. Trust me after people spend a little while with Nellie they forget all about the fact she is disabled. What I do find offensive is when people make comments. The worst was when she was a baby and people would look at her and say oh my what's wrong with her eyes with that shocked disgusted sound in their voice. Please have a little tact. Ask instead I notice her eyes shake what causes that? In other words think before you word your sentences. If my younger children can do this so can adults. For example we saw a young girl who had a bone condition on our last trip to the hospital and my six year old did notice this girl immediately. Her response was mommy was that little girl born that way? I say yes I believe she was. Emma says mommy that chair looks like a lot of fun do you think she races in it? I said I don't know go ahead and ask her. Being shy Emma didn't.Never once did they make the little girl feel like a side show.
There are proper ways to approach the parent of a disabled child. If you're not sure the right way imagine that child was yours and think of how you would want someone to ask. I guess in a way it's easier for me having been in those shoes.
I'll finish this blog today with one simple request. Teach your children from a young age about disabilities. Try to put them in situations where they will be exposed to people who have disabilities. Young children may embarrass you at first and ask some outlandish questions or even show their shock. After talking to other disabled adults I have learned when children do these things it's not hurtful to them. In fact many will talk to the children and explain things in a way they'll understand. It's by teaching your children that they learn understanding and acceptance!
Thursday, July 22, 2010
An open letter to Nickelodeon and Disney
To whom it may concern:
Thank you so much for your programming (Even if I swear it has subliminal messages to children). It is because of you I get my little bit of sanity during the day, but also because of you I am driven insane on a daily bases with your montages of songs which are sang out of tune by five children daily.
Yes Phinias and Ferb have become a staple in our home, almost at one time overtaking Sponge bob. I have to wonder who would win in a cage match Gary or Perry. Gary is slow, but then again he is the quiet type and everyone knows you have to watch the quit ones. I also am curious how exactly a pineapple ended up under the sea and why a sponge would want to live in one. Oh the things that boggle a parents mind.
Back to the point of this letter. It is during your programming when I can sit back and not wonder what Nellie is going to dump on my floor. I do have one request please do away with commercials. It is during the ads Nellie turns wearing her wide smile and I have to watch carefully to see what her mind is thinking of. Usually this is the point I have to duck to avoid a flying toy, or grab a bottle of Pepsi just before it becomes a puddle in the middle of my living room rug. Yes, even bathroom breaks are avoided at all costs during your shows, which can at times lead to another mess for me to clean.
Mine is a simple request please get rid of the ads or simply have all ads starring your addictive characters. Perhaps at the very least you can add a subliminal message that says use the bathroom, toys aren't for throwing, please don't ruin the rug. With that stated I plan to send you a six hour video of my children singing all your catchy tunes, ENJOY!!!!
Sincerely,
A very very tired Mama
Thank you so much for your programming (Even if I swear it has subliminal messages to children). It is because of you I get my little bit of sanity during the day, but also because of you I am driven insane on a daily bases with your montages of songs which are sang out of tune by five children daily.
Yes Phinias and Ferb have become a staple in our home, almost at one time overtaking Sponge bob. I have to wonder who would win in a cage match Gary or Perry. Gary is slow, but then again he is the quiet type and everyone knows you have to watch the quit ones. I also am curious how exactly a pineapple ended up under the sea and why a sponge would want to live in one. Oh the things that boggle a parents mind.
Back to the point of this letter. It is during your programming when I can sit back and not wonder what Nellie is going to dump on my floor. I do have one request please do away with commercials. It is during the ads Nellie turns wearing her wide smile and I have to watch carefully to see what her mind is thinking of. Usually this is the point I have to duck to avoid a flying toy, or grab a bottle of Pepsi just before it becomes a puddle in the middle of my living room rug. Yes, even bathroom breaks are avoided at all costs during your shows, which can at times lead to another mess for me to clean.
Mine is a simple request please get rid of the ads or simply have all ads starring your addictive characters. Perhaps at the very least you can add a subliminal message that says use the bathroom, toys aren't for throwing, please don't ruin the rug. With that stated I plan to send you a six hour video of my children singing all your catchy tunes, ENJOY!!!!
Sincerely,
A very very tired Mama
Wednesday, July 21, 2010
Janelle's- Amazing
The morning cold and raining,
dark before the dawn could come
How long in twilight waiting
longing for the rising sun
ohoh ohoh Oh ooh
You came like crashing thunder
breaking through these walls of stone
You came with wide eyed wonder
into all this great unknown
ohoh ohoh Ohoooh Oohh
Hush now don't you be afraid
I promise you I'll always stay
I'll never be that far away
I'm right here with you
You're so amazing you shine like the stars
You're so amazing the beauty you are
You came blazing right into my heart
You're so amazing you are...
You are
You came from heaven shining
Breath of God still flows from fresh on you
The beating heart inside me
Crumbled at this one so new
ohoh ohoh Oooh ooohhh
No matter where or how far you wander
For a thousand years or longer
I will always be there for you
Right here with you
[Chorus]
You're so amazing you shine like the stars
You're so amazing the beauty you are
You came blazing right into my heart
You're so amazing you are...
I hope your tears are few and fast
I hope your dreams come true at last
I hope you find love that goes on and on and on and on and on
I hope you wish on every star
I hope you never fall too far
I hope this world can see how wonderful you are
You're so amazing you shine like the stars
You're so amazing the beauty you are
You came blazing right into my heart
You're so amazing...
You're so amazing you shine like the stars
You're so amazing the beauty you are
You came blazing right into my heart
You're so amazing you are...
You are
ooooooo
WOW!!!!!!! What a fitting song for my Nellie. More so since she shares the singers name!
I can lift the world
I know I can lift the world, I've done it. The weight has laid on my shoulders so many times I'm surprised it didn't leave permanent dents. No I'm not strong to have held this weight, nor brave. I am just a mother. I have felt the bitter tears of fear as I thought about Nellie's future. I've mourned many times for what she could have been, but then I think my God, she is already so wonderful. Last night while talking to a friend I said if they said tomorrow they had a cure right away I'd say great let's do this thing, but then I'd stop and say will this cure change her personality, who she is? If the answer would be yes I wouldn't be so quick to get in line.
I have a lot of fears for Nellie's future so bravery is not quite the word I would use for myself. I fear how the world is going to view her. I fear what will become of her when I am gone. I would never rest in peace until I knew she was safe and happy, just as I wouldn't unless I was sure of the same thing with my other children. No, I'm not brave. I'm still a scared little girl deep down who many times has ran into my grandma's arms for comfort when the doctors said something that really struck a cord with me. I'm the same little girl who wants to hide from it all every now and then, but I can't. I know I have to fight for her. If I don't she'd become lost in the system. I refuse to allow her to become anything less than what she can be.
Strength is another quality people have said I have. I wouldn't call it that. I just do what I have to, what any other parent would have. When the doctors told me answers may never come I wouldn't accept it. I dealt with family and friends saying I was looking for something wrong knowing that in fact wasn't the case. There had always been something wrong I simply wouldn't give up the hunt. Throughout history if people had given up the hunt there wouldn't be antibiotics, electricity, America. Just as these things that were hunted for are great so Nellie will be too.
I'm under no delusion that Nellie will be a rocket scientist, she won't be. In fact what her future holds is so uncertain sometimes I hate to think about it. I do know however she will become something great. She will be a great, loving person. She will bring great joy to those around her and to be honest that fills me with more pride than if she were to be elected President. Whatever Nellie becomes in life it won't be because of my strength or my bravery it will be because of my love and her strength and her bravery.
This child has been through so much. She's been poked and prodded for nearly four years now. She sees doctor after doctor and never cries. She sees children do things she can't, yet never complains. In my opinion she is stronger than any vice ever created and braver than an explorer that ever tackled the unknown. She's my Nell Bells and I will forever be in awe of her.
I have a lot of fears for Nellie's future so bravery is not quite the word I would use for myself. I fear how the world is going to view her. I fear what will become of her when I am gone. I would never rest in peace until I knew she was safe and happy, just as I wouldn't unless I was sure of the same thing with my other children. No, I'm not brave. I'm still a scared little girl deep down who many times has ran into my grandma's arms for comfort when the doctors said something that really struck a cord with me. I'm the same little girl who wants to hide from it all every now and then, but I can't. I know I have to fight for her. If I don't she'd become lost in the system. I refuse to allow her to become anything less than what she can be.
Strength is another quality people have said I have. I wouldn't call it that. I just do what I have to, what any other parent would have. When the doctors told me answers may never come I wouldn't accept it. I dealt with family and friends saying I was looking for something wrong knowing that in fact wasn't the case. There had always been something wrong I simply wouldn't give up the hunt. Throughout history if people had given up the hunt there wouldn't be antibiotics, electricity, America. Just as these things that were hunted for are great so Nellie will be too.
I'm under no delusion that Nellie will be a rocket scientist, she won't be. In fact what her future holds is so uncertain sometimes I hate to think about it. I do know however she will become something great. She will be a great, loving person. She will bring great joy to those around her and to be honest that fills me with more pride than if she were to be elected President. Whatever Nellie becomes in life it won't be because of my strength or my bravery it will be because of my love and her strength and her bravery.
This child has been through so much. She's been poked and prodded for nearly four years now. She sees doctor after doctor and never cries. She sees children do things she can't, yet never complains. In my opinion she is stronger than any vice ever created and braver than an explorer that ever tackled the unknown. She's my Nell Bells and I will forever be in awe of her.
Tuesday, July 20, 2010
A detour in the road
There was a detour in the road of Nellie's journey. I guess in a way that is why it's been so long since I posted. We have gone through a battery of tests from Genetic doctors to developmental pediatricians. I guess since she was born I have been searching diligently for answers. I have crossed every bridge and walked barefoot down every rocky road of the medical society I could. I needed to know, being a person who hates a mystery. I was the kid who pulled back the corners of Christmas gifts on Christmas Eve just to see what was inside. So in a way Nellie was my Christmas gift. The best Christmas gift ever, yet I needed to know what was inside. I had to find out what was hidden below the surface. Today I found out.
She has something wrong with her DNA (Could be chromosomes after the doctor started talking his voice droned out into an annoying buzz). Anyway he has her listed as Clinically uncertain and can't find much literature on what is wrong with her so we will wait and see I guess.
I cried again. I cry a lot these days when it comes to Nellie. I mourn what could have been. I ask what I could have done. In the end I know Nellie is who she is because God made her that way. I was IM'ing with a friend a little while ago and I hope she doesn't mind I share our conversation as it says it all about how I feel about Nellie.
12:13pmMe
the one thing we know at this point is everything wrong with her now has one answer
autism visiual impairment hearing loss everything
12:13pmCandi
would you mind if i have your family added to a prayer chain?
12:14pmMe
and the list is long
12:15pmCandi
omg it's been a hard week for people conected to me :(
12:15pmMe
This isn't so hard just hard to hear if anything I should be praising God for the answers I begged him for
you know someone once asked me how I could believe in a God who would make children like Nellie
12:16pmCandi
really?
12:16pmMe
and I say how could I not believe in a God that would make such a loving, sweet little girl
A God that chose me because he knew I would do for her everything I could and love her harder than I have ever loved anything
12:18pmCandi
omg you've got me crying...i don't even know nellie but when you look at her you see a beautiful, sweet, kind-hearted little angel...she was put here for a reason
12:18pmMe
I favor Nellie, it's not just me everyone in this house favors her everyone who meets her favors her
her teacher even said nellie was her favorite
that little girl is destined for great things she's got this magnetism about her that makes everyone want to love her
12:19pmCandi
i wish i could meet her...and you and the others too
12:19pmMe
she doesn't hug or kiss but she just smiles and it's like omg that smile is for me
thanks Candi
we'd love to meet you too
one day I'm sure
12:20pmCandi
i'm trying to read about chromosonal anomolies (sp?)...i think nellie is a miracle
12:21pmMe
it's not so much the chromosome it's the dna in them or something I have no idea how to explain it after not getting better he just sounded like an annoying buzz lol
12:22pmCandi
i've read that 139 in 140 fetus' with a missing chromoson spontaneously abort....nellie is meant to be here
12:23pmMe
she has a single umblical vessel too which has a greater risk of miscarriage
she only weighed 5'15 full term
12:24pmCandi
nellie IS favored...God CHOSE her to survive!
12:25pmMe
you know I will say one thing for my grandpa that he did in the very end he brought me back to God and he was the one who always said Nellie is just fine and I'd say grandpa the doctors said this or that and he'd look me straight in the eyes and say Nellie is just fine
and I know for the rest of her life he will be on her shoulder just as he was always with her when he was alive
12:26pmCandi
and she is...she's exactly the way God intended her to be
12:27pmMe
she has an abundance of prayers said for her all the time and she loves church even if she doesn't fully understand it she is a friend of God
12:28pmCandi
that's so great to hear
12:30pmMe
lol I was trying to explain chromosome to the kids and emma says I think I only have two of those so nellies ok lol
emma explains it all
12:35pmCandi
awww, cutie emma
12:57pmMe
ok her regular doc just called they have her listed as clinically uncertain because whatever all this is is very rare and the genetic doctor wrote there isn't much literature
1:28pmMe
hehehehehe wanna hear the course of treatment?
1:28pmCandi
sure, lol
1:29pmMe
what she's getting already
lol the doc just don't know lol
she's making his butt work
1:37pmCandi
i asked my friend nicole to pray and explained the rarity of it to her...she says that nellie was put on earth to teach people about this syndrome
1:41pmMe
In a way I think Nellie was put her to make us all see that no matter what we need to forget about the bad things in life and just smile :)
1:42pmCandi
yup :D
So to finish todays blog I just want to say smile for Nellie. I figure if she can smile through everything she's been through what right do we have to frown?
She has something wrong with her DNA (Could be chromosomes after the doctor started talking his voice droned out into an annoying buzz). Anyway he has her listed as Clinically uncertain and can't find much literature on what is wrong with her so we will wait and see I guess.
I cried again. I cry a lot these days when it comes to Nellie. I mourn what could have been. I ask what I could have done. In the end I know Nellie is who she is because God made her that way. I was IM'ing with a friend a little while ago and I hope she doesn't mind I share our conversation as it says it all about how I feel about Nellie.
12:13pmMe
the one thing we know at this point is everything wrong with her now has one answer
autism visiual impairment hearing loss everything
12:13pmCandi
would you mind if i have your family added to a prayer chain?
12:14pmMe
and the list is long
12:15pmCandi
omg it's been a hard week for people conected to me :(
12:15pmMe
This isn't so hard just hard to hear if anything I should be praising God for the answers I begged him for
you know someone once asked me how I could believe in a God who would make children like Nellie
12:16pmCandi
really?
12:16pmMe
and I say how could I not believe in a God that would make such a loving, sweet little girl
A God that chose me because he knew I would do for her everything I could and love her harder than I have ever loved anything
12:18pmCandi
omg you've got me crying...i don't even know nellie but when you look at her you see a beautiful, sweet, kind-hearted little angel...she was put here for a reason
12:18pmMe
I favor Nellie, it's not just me everyone in this house favors her everyone who meets her favors her
her teacher even said nellie was her favorite
that little girl is destined for great things she's got this magnetism about her that makes everyone want to love her
12:19pmCandi
i wish i could meet her...and you and the others too
12:19pmMe
she doesn't hug or kiss but she just smiles and it's like omg that smile is for me
thanks Candi
we'd love to meet you too
one day I'm sure
12:20pmCandi
i'm trying to read about chromosonal anomolies (sp?)...i think nellie is a miracle
12:21pmMe
it's not so much the chromosome it's the dna in them or something I have no idea how to explain it after not getting better he just sounded like an annoying buzz lol
12:22pmCandi
i've read that 139 in 140 fetus' with a missing chromoson spontaneously abort....nellie is meant to be here
12:23pmMe
she has a single umblical vessel too which has a greater risk of miscarriage
she only weighed 5'15 full term
12:24pmCandi
nellie IS favored...God CHOSE her to survive!
12:25pmMe
you know I will say one thing for my grandpa that he did in the very end he brought me back to God and he was the one who always said Nellie is just fine and I'd say grandpa the doctors said this or that and he'd look me straight in the eyes and say Nellie is just fine
and I know for the rest of her life he will be on her shoulder just as he was always with her when he was alive
12:26pmCandi
and she is...she's exactly the way God intended her to be
12:27pmMe
she has an abundance of prayers said for her all the time and she loves church even if she doesn't fully understand it she is a friend of God
12:28pmCandi
that's so great to hear
12:30pmMe
lol I was trying to explain chromosome to the kids and emma says I think I only have two of those so nellies ok lol
emma explains it all
12:35pmCandi
awww, cutie emma
12:57pmMe
ok her regular doc just called they have her listed as clinically uncertain because whatever all this is is very rare and the genetic doctor wrote there isn't much literature
1:28pmMe
hehehehehe wanna hear the course of treatment?
1:28pmCandi
sure, lol
1:29pmMe
what she's getting already
lol the doc just don't know lol
she's making his butt work
1:37pmCandi
i asked my friend nicole to pray and explained the rarity of it to her...she says that nellie was put on earth to teach people about this syndrome
1:41pmMe
In a way I think Nellie was put her to make us all see that no matter what we need to forget about the bad things in life and just smile :)
1:42pmCandi
yup :D
So to finish todays blog I just want to say smile for Nellie. I figure if she can smile through everything she's been through what right do we have to frown?
Wednesday, May 5, 2010
Oh how busy she keeps me
So I haven't posted in a while and Nellie's been keeping me on my toes. She finally got in for a full evaluation and we got some surprising results and testing coming up. All in all they like everyone else have no idea what's going on with her. They said possibly autism, but not classic autism. We have to go to an orthopedic doctor for her bow leg and foot, genetic testing, two more autism screenings, and a test to see if she has seizure disorder. The test may seem scary to some people, but for us it is a relief. Maybe finally we will get some answers. Keep your fingers crossed for Nellie that soon we will know one way or another and I promise to keep this updated more regularly.
Friday, January 29, 2010
The scare of my life
So Nellie decided to scare the crap out of me. On Monday she had a runny nose. On Tuesday she had a runny nose and a cough. Tuesday night she went to bed and kept us up all night. She kept crying I hurt, I hurt, but of course couldn't tell me what hurt. I brought her in bed with us and nuzzled all night, thinking she was getting an ear infection...it wasn't.
The next morning I woke up and Nellie came out on the couch. I was getting all the kids ready for school and when they were off turned my attention back to Nellie. I sat down beside her and noticed she was a bit lethargic. She was breathing pretty fast and hard, making this giggly sound she does when she is having an asthma attack. I picked her up and took her into the bathroom where I turned on the hot shower and sat with her.
Within minutes she was gasping. The giggly sound was gone, replaced with her trying hard to breath. I called my husband and said if you don't get home now I am calling an ambulance. He was home within minutes and we were on our way to the doctors.
Nellie's oxygen was at 94 and dropping when we got there. The doctor hurried in and got her on the nebulizer. After two doses she finally came out of it and went to sleep. When the doc hear her snoring he told me she has sleep apnea (A blog for another day) and he's going to send her to yet another specialist. However that was not was was wrong with her this time. She had pneumonia!! So we now have her on tons of scripts and nebulizing every four hours.
Nellie is getting better now and for that I send praise to God. I never want to see one of my children struggling to breath again. It was the scariest moment of my life!
The next morning I woke up and Nellie came out on the couch. I was getting all the kids ready for school and when they were off turned my attention back to Nellie. I sat down beside her and noticed she was a bit lethargic. She was breathing pretty fast and hard, making this giggly sound she does when she is having an asthma attack. I picked her up and took her into the bathroom where I turned on the hot shower and sat with her.
Within minutes she was gasping. The giggly sound was gone, replaced with her trying hard to breath. I called my husband and said if you don't get home now I am calling an ambulance. He was home within minutes and we were on our way to the doctors.
Nellie's oxygen was at 94 and dropping when we got there. The doctor hurried in and got her on the nebulizer. After two doses she finally came out of it and went to sleep. When the doc hear her snoring he told me she has sleep apnea (A blog for another day) and he's going to send her to yet another specialist. However that was not was was wrong with her this time. She had pneumonia!! So we now have her on tons of scripts and nebulizing every four hours.
Nellie is getting better now and for that I send praise to God. I never want to see one of my children struggling to breath again. It was the scariest moment of my life!
Wednesday, January 20, 2010
Nellie the wrecking ball
Yes Nellie is a wrecking ball. She can destroy a room in seconds flat. The problem is she is not made of metal and often hurts herself as well. You see Nellie is very bull legged and also has a tight foot muscle which makes her foot turn in pretty badly. She also has little to no depth perception so she is clumsy. In less than two weeks this girl has gone down the basement stairs on her belly. hit her head numerous times and now fell off the couch onto the end table.
Another issue we have with Nellie is her under sensitivity to pain. I guess in a way that's a good thing for her, but not so much for us. It's very hard to tell how bad she is hurt. Ok, I take that back because when she fell off the couch she screamed!!!!! The thing is unless she is really, really hurt she does not cry.
It's scary sometimes because most kids learn from getting hurt. They jump off something, hurt themselves and their brain says hummm I better not do that again, but not Nellie. She'll do it over and over and one day I fear this will cause a broken bone or more stitches (She had her first set of stitches over the summer after an attack by a dog food can).
To all the mothers who have children who have under sensitivity to pain, I feel you. Most people think it's a good thing, yet we know it's not.
Another issue we have with Nellie is her under sensitivity to pain. I guess in a way that's a good thing for her, but not so much for us. It's very hard to tell how bad she is hurt. Ok, I take that back because when she fell off the couch she screamed!!!!! The thing is unless she is really, really hurt she does not cry.
It's scary sometimes because most kids learn from getting hurt. They jump off something, hurt themselves and their brain says hummm I better not do that again, but not Nellie. She'll do it over and over and one day I fear this will cause a broken bone or more stitches (She had her first set of stitches over the summer after an attack by a dog food can).
To all the mothers who have children who have under sensitivity to pain, I feel you. Most people think it's a good thing, yet we know it's not.
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