December 24, 2007
August 20, 2007
August 14, 2007
Be Humble and Have Humility!!!!
If I hear one more person say how bad they have it and in the next breathe complain about how their parents/family only gave them so much money, in their time of need or their parents bought their kids clothes/toys/stuff that weren't to their exact liking, I think I will scream. Don't they know how selfish and bratty they sound!!!
We do not have anyone and I mean anyone to help us out. No one buys our kids clothes for school or any other time. No one helps us out when our food is short, there are bills to be paid, our rent is due, our car is broken down, or we have no gas. We do without and we learn to budget better next time. I would love to have family to help us out, but we don't. I hate when people brag about all that they have.
Don't people understand that there are people out there that barely have enough money to make it each month.
One lady, I know, complains she can't buy anymore clothes for her daughter because her daughter does not have enough room in her closet for anymore clothes and she still has tons of clothes, with the tags on, that have not yet been worn. Another complains about the car she is given. Another about her new big house that her husband bought for her. The list could go on for days.
I worry about having enough money to pay the bills and having enough food until the end of the month. My children only get clothes when they outgrow the ones they have. I would love for them to have more but we just can't afford extravagances. We feel lucky to have been able to buy a used 98 Plymouth Voyager last year.We live in a apartment, I am not sure we will ever be able to afford a house. Can you see why these peoples complaints bother me so much!!!
I love when people like to point their finger and say well it's your own doings, you shouldn't have had so many children. If you had less children, you would have more money.
Yes, I can see where you would think that is true, but since birth control failed twice and I don't personally believe in abortion, God chose the amount of children I have. He also chose for them to have special needs that can be costly at times. He also chose for me to be disabled.
So in fact you are blaming God. So why don't you take your foot and shove it into your mouth a little more. You obviously don't know what you are talking about.
I am not even jealous. I am just tired of the "Me" attitude. Be thankful for what you have and are given. Don't brag to make yourself look better. Understand that for some people life is hard. Think before you speak. Be humble and Have a little humility. In God's eyes no one is better than anyone else. We are all equal in the eyes of the Lord!!!!!!
August 9, 2007
Sometimes I Wonder About Certain People......
I took my first swim exercise class today. I tell Ryan, who is in the other pool, that I will try the class and stop if it gets to hard.
The instructor says "Oh, once you start you can't leave."
The instructor asks if anyone is new and I raise my hand. She explains that it is pretty self explanatory and thats that. I start in the shallower end and ask the instructor if it is harder in the shallower part or deeper. She gives a lame explanation that both are harder in their own way. I decide I will continue and see if I can't adapt myself. About 20 min into the routine, my legs start to really hurt.
I ask, if the deeper end might not be easier on my legs.
She gives me attitude and asks in a snide tone, "So, whats your problem?"
I look at her dead in the eye and say, "I Have MS and my legs are starting to hurt!"
Chagrined, She says, "Oh, deep end is better, here is a weighted belt"
She is overly nice to me the rest of the time.
What I don't understand is, I was the first one at the class and I walked in with a cane. Wouldn't that be a clear sign that I am disabled. DUH!!!!!
I understand that I was about 10-20 yrs younger than everyone, but being young doesn't mean you are excluded from being disabled. If I was more able, I would have been doing aerobics/step in the workout area. I took this class so I would feel more capable and fit in better. What the instructor did was cause me to feel yucky about myself and singled out attention wise. Whats even sadder is that this class was specifically for the physically challenged. She should know how to teach this class. KWIM!!!!! It just makes you wonder, these people are supposed to know better. At least the people that hired these insructors should....
That said, even though she wasn't the best teacher. I did make it through the class. I felt like that, in it's self, was a big accomplishment, even if she was a Non Compos Mentis!!!
August 8, 2007
I Bought A Scale
I Hate Scales. I liken them to a Medieval Torture Device. I have been heavy since I was born and have always dreaded weigh in day. I actually never planned on owning a scale. Yet there It is sitting in our van taunting me. It wants me to weigh myself but I am resisting. I don't know how much longer I can take the pressure. We actually bought it to monitor Hunters weight. So why is the scale picking on me. Yup, it's winning. I am going to go get that scale and weigh myself. If you hear a loud scream. That was me, losing what mind I have left. Wish Me luck. This will get ugly!!!!!!!!!!!!
August 6, 2007
Please Support My Fundraiser!!!
In an effort to meet the costs of the therapeutic and medical needs of my three special needs children. I have started a fundraiser website. I am not asking you directly for money. I am just asking you to get the word out about my website.
I am actually offering to becoming a Personnel Web Assistant in exchange for a donation to my children's fund.
So would you please do me a favor. Check out my website and pass it on to people who might need my help/service.
Here is the website: http://hstrial-kmiller657.homestead.com/index.html
Thanks for spreading the word!!!!
August 4, 2007
I was tagged by my friend Andrea(by the way, Thanks!!!) to give 8 random facts/habits about myself.
1. I have to post these rules before I give you the facts.
2. Each player starts with eight random facts/habits about themselves.
3. People who are tagged need to write their own blog or e-mail (about their eight things) and post these rules. (**if you’re a non-blogger, you can email them!)
4. At the end of your blog/e-mail, you need to choose eight people to get tagged and list their names.If you are doing this by e-mail send them the rules and your facts/habits via e-mail.
5. Don’t forget to leave them a comment or e-mail telling them they’re tagged, and to read your blog or e-mail with your awnsers. Eight random facts and/or habits!!!
Alright here are my 4 facts and 4 habits, enjoy! Please don't fall asleep!!!!!!
When I was a little girl, my sister and I were the same size, even though she was 2 yrs older than me. Quite a few times, when we were out together, people would ask if we were twins. So we came up with this idea, to tell everyone who asked, that we were 2 of 3 triplets. So whenever we went out by ourselves and met anyone we had told, we would go by a one of three names, so they wouldn't catch on. It was hysterical because people actually believed us. We almost only got caught once. Someone stopped my aunt and I, at a store and asked how we all were. My aunt did not know how to respond. To this day I still think that she thinks that person was on drugs.
When I was a little girl, my family life was so overwhelming that during the roughest times, I would hide under my grandma's coffee table that was covered with a sheet. It was my own secret cave. My grandma would make me a paper bag lunch and I would stay there all day. I would read, play with my dolls, color, or watch her TV. When she was making cookies, she would sneak me some to eat. I love and miss her very much. When I was little, I felt like she was the only one that understood me.
When I was in Jr High School, I wanted my hair permed for the 9th grade dance. I had very straight hair. It took a lot of convincing but I eventually got my mom to perm my hair. She was a professional Hair Stylist, so I had no fear that she would do a bad job. So the day of the dance she perms my hair and then puts it in curlers. Two hours before the dance she was finally done, I look in the mirror and I see, SHIRLEY TEMPLE!!!! I don't know how in the hell, I didn't freak out. I told my mom that I had to be at the dance early to set up. I went to my Jr High School and met up with some of my friends. I had a good cry and then they helped me wet my hair down and styled it. Once we did that my hair actually looked great. I even got a boyfriend that night. People kept on telling me all night how great I looked. If they only knew!!!! Thank God for my friends.
I played sports since I was 5 yrs old. When I was in 10th grade, I tried out for the Varsity Girls Field Hockey Team. Our coach chose me to be on the team. I was so happy and then I found out that the new girls had to go through initiation. The first two tests weren't to bad but the third was horrible. We had to run across the Football field in our Bra's and Panties, while the Varsity football team was practicing. I had never been so embarrassed in my whole life. I was beet red. I was very shy at the time. The fact that the boys were whistling at us and making lewd comments didn't help. I was actually asked out by one of the team, the next day.
When my sister and I were in our teens, we used to sneak out on Friday nights to go to the roller skating rink. We would wait until our mom left to work the night shift and then put on our really tight Gittano jeans and short shirts and walk to the skating rink. We would stay there until 12pm and then walk the mile home in the dark. Our mom never caught us. She eventually started letting us go a year later. Still the best times we had were when it was done on the sly.
I will take anyone into the bathroom with me. I mean, when I am on the phone. I have been known to take Dr's offices, utility companies, friends, and family in the bathroom with me. Especially when they put me on hold. I will do my business and not say a word. With the amount of children I have, it is important to utilize all my time. Shocker, Huh!!!!!!
I am very fussy about the way food is cooked or prepared. If I think or feel that you defrosted your meat products too long, didn't wash your hands before you prepared the food, didn't clean the chopping board the right way, touched my food with your bare hands, left the food in the fridge for too long, and/or if I feel that the pots, pans, dishes, or utensils are not clean enough to cook/eat food off of, I will not eat your food. I have a horrible Gag reflex and if those thoughts come into my head, while I am eating I will gag and throw up. I am so Twisted and Picky!!!! I know and all I can do is apologize...
I love to believe in the best in people. I believe that all people are good until they prove me wrong. I have been accused of being gullible and in some ways I am. I just feel that the world has become to cynical and that what we need is hope in the human race, not fear and suspicion. The world should be less about me and more about the greater good, Glorifying God!!! I am not saying that I have not been hurt believing in what I believe. But I have also made some wonderful friends that I would have probably never met had I been cynical and uncaring. Sorry, preaching over now!!!!!
I hope you all enjoyed my Funny stories, Embarrassing moments, and Idiosyncrasy's!
Now it's my turn to choose some unsuspecting victims. Lets see, I choose Whisper, Jennifer, Kelsey, Michelle, Danielle, Amanda(P-2-P), and Melissa.
I hope you all enjoy. Big Hugs!!!!!!!!
July 27, 2007
July 26, 2007
When I was pregnant with Jessica, I used to dance around the apartment, singing this song full blast to my baby Girl. Today, she is almost 6yrs old and we still dance around the room to this song. Now she has 2 younger brothers that Join us. I love this song and pray this for all my children.
I hope you never lose your sense of wonder
You get your fill to eat but always keep that hunger
May you never take one single breath for granted
God forbid love ever leave you empty-handed
I hope you still feel small when you stand beside the ocean
Whenever one door closes, I hope one more opens
Promise me that you'll give faith a fighting chance
And when you get the choice to sit it out or dance
I hope you dance, I hope you dance
I hope you never fear those mountains in the distance
Never settle for the path of least resistance
Livin' might mean takin' chances, but they're worth takin'
Lovin' might be a mistake, but it's worth makin'
Don't let some hell-bent heart leave you bitter
When you come close to sellin' out, reconsider
Give the heavens above more than just a passing glance
And when you get the choice to sit it out or dance
I hope you dance, I hope you dance
I hope you dance, I hope you dance
(Time is a wheel in constant motion, always rolling us along
Tell me who wants to look back on their years
And wonder, where those years have gone)
I hope you still feel small when you stand beside the ocean
Whenever one door closes I hope one more opens
Promise me that you'll give faith a fighting chance
And when you get the choice to sit it out or dance
Dance, I hope you dance
I hope you dance, I hope you dance
I hope you dance, I hope you dance
(Time is a wheel in constant motion always rolling us along
Tell me who wants to look back on their years
And wonder where those years have gone)
July 22, 2007
"I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this....
When your going to have a baby, it's like planning a fabulous vacation trip-to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!" you say. "What do you mean Holland? I signed up for Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place.
So you must go out and buy new guidebooks. Any you must learn a whole new group of people you would never have met.
It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there a while, you catch your breath, you look around....and then you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away....because the loss of that dream is a very, very, significant loss.
But....if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things....about Holland."
July 21, 2007
Dear Loved Ones Please Pray For Our Hunter
Our Dear Hunter is really sick right now. He is worrying his mommy and daddy so much. He is severely constipated. He is refusing to eat due to his inability to poop. He normally eats all the time and is already underweight. This has been going on 2 weeks now. He has lost so much weight. The normal meds to help him poop are not working.
I would take him to his GI but he stinks. We have talked to his Ped and she is telling us to wait and see if the meds eventually kick in. I changed him into his pj's tonight and he is all bone. I am not sure how much longer his body can take this.
Please pray because we are very scared for him!!!!
July 14, 2007
My Last Two Weeks Have Been Rough
Since this is my blog. I am going to let this out.
Yes, I am actually going to talk about myself.
Last week, my legs became swollen and my pain has increased exponentially. I keep trying to fool myself and everyone around that I am Ok. The truth is I am not. I just don't want to bother, stress, or upset anyone. My Multiple Sclerosis is getting worse.
I am not sure how much longer I will be walking. I can't even walk ten minutes without screaming agony. I am having trouble standing up, my legs are a lot weaker, the numbness is getting worse, I keep loosing my balance, I am having trouble getting into our van, my legs shake, and I am having trouble moving them.
Today, my friend Danielle and I took the kids to a little girls party and after two hours I needed to go home. I took a pain pill when we got home and slept for 5 hours. What is sad is that I took a pain pill before we left. I used anything I could lean on to hold me up. Smiled my smiles, chatted, and acted happy. When all I wanted to do was collapse. I was praying the whole time I wouldn't make a fool of myself.
The only one that really knows how bad I feel is Ryan. He reads me very well. He can look at me and know when I am toughing it out. He will find me a seat and finish up what we were doing without me even asking. He will then rush me home and help me to the couch. I may be smiling but he sees the white ring around my mouth and know I am actually in severe pain.
Friday, I actually called my Primary Dr. and scheduled an Appt. to see about getting a scooter. I finally realized that my walking days are nearing an end.
Ryan told me Friday that he is very worried about me. He talked with our friend Jimmy about the fact that he just doesn't know where our life is taking us. Ryan told Jimmy that he does not know why he was chosen to have a wife and children with disabilities. Ryan told me that he loves me and is in it for the long run but it is hard to see my go through this.
Ryan wasn't sure about going camping next weekend with the kids. I told him that this will probably be the only summer with the kids that I will be able to go camping with them. So we have to go. I want them to remember this. I need them to remember this.
Thanks everyone, I just needed to get this out.
July 8, 2007
That's Not Normal!!!!
If one more person says to me,
"You know, what ______(insert one of our children's names in the blank) is doing/acting/exhibiting either behaviorally, physically, or health wise is just not normal!",
I am seriously going to loose it!!!!!!!!!!!!!!!!!!!!1
We have been dealing with our children's behavioral and health issues since they were born. So why do people, mostly family feel that we need to be informed of issues we already knew existed? Of course we know, we are with our children constantly. We know our children!!! We may just not want to talk about what is going on.
I am tired of people telling us that we have to advocate for our children. If they really knew Ryan and I, they would know that we have always put our children's needs first. We are constantly fighting to get our children help.
Telling us that we need to fight the doctor's/specialist's/insurance more does not help us. What it does do, is it makes us feel like crap. That the consensus is that we are not doing our job. When in fact, it is the Insurance that is failing our children.
I just wanted to inform you all. That if you are reading this blog, I am not talking about you. I allow you read this blog, because I only let smart people, who understand how we feel, know that I even have a Blog.
Thanks All, I love you!!!!!!!!!!
July 3, 2007
Why Matthew, Lord???
It is 4:50 am and I am sitting here having a good cry. Matthew is having a harder time walking. Whatever is going on is now affecting his left side more. I didn't want to upset our family, so I waited until everyone is asleep to have my little meltdown.
I am trying to give it to God, but I can't help but question God's purpose in all that is going on. I have a hard time believing that God would let a small child suffer like this. Why isn't he intervening?
I know, I know, it's kinda sad that we blame God when something bad happens. I guess it is because we need someone to be the scapegoat for our pain and anger. I don't want to use God as my scapegoat. I just want Matthew to get better.
My heart is breaking for my little guy. Besides the walking problem, he seems more uncomfortable every day. He is no longer my happy little boy. I fear that whatever is going on with him is causing him pain. I hate that he is in pain and I can't do anything to help him.
I am praying that a neuro can see him soon. The UC Davis Pediatric Neuro has a 6 to 9 month waiting list. We asked the Ped about sending all three children to Lucille Packard Children's Hospital to see a Neuro there. He was not sure if our insurance would pay for it.
Would you all do me a favor? Could you all pray that our insurance decides to let our three children go to Lucille Packard Children's Hospital for services. LP is the best Children's hospital in Northern California.
June 20, 2007
It came to me today, in a startling realization, that I am loosing my faith.
My Faith in people, in Doctors, in Myself, and most importantly God!!!
because from what I have seen, it seems that there is more bad than good. People hurting people for the sake of feeling better about themselves. Trust, friendship, love, goodness, and morals have been thrown to the wayside for greed and lust.
Because they have too many patients and not enough time. So patients are more like a number than a name. The Ill and the disabled are being lost in the system. They have to fight everyday, just to find out, in the end, that no one wants to help them. Why is insurance running the doctors, not visa versa?
Because not matter what I do, I cannot get my children the help and services they need. I am their parent and I feel that I am failing them. The Doctors and specialists say the children need this, this, and this, but the insurance, schools, and other agencies do not want to help them. I battle everyday and feel like I am never getting anywhere.
Don't get me wrong, I do believe in God. I am just loosing my faith in him helping me or my family anytime soon. I want to believe he will, but my belief candle is growing dim. Why would God make me disabled, give me three special needs children, and then not give me the help I need for them. What is the point of God letting me and my family go through any more hardship than what I already have been given? My heart longs for an answer!!!!
June 18, 2007
Treats Our Children!!!
Wow, you say, what has caused this woman to go off the deep end?
While we were waiting to be seen, I noticed that their Medical files had been left in the room. Being the Curious George, I decided to look in Hunter's file, since it was on top. As I am scanning through his file, I come upon his blood/urine labs. Probably about 4 years worth. Turns out as I am looking at them that he has had abnormal labs since he was a baby. Between 7 to 8 lows and highs on each lab. I was floored because the Pediatrician has always told us that Hunter's blood work was fine. I saw things like High Blood Sugar, Keytones in the urine, low CO2, low Creatine, High Red Blood cells, and ect. I know that it can't be good but I kept it in the back of my mind until I get home.
I look up, what I can remember on the internet. Everything I read was all bad. I finally look up Low Blood Creatine. Almost every site says Low Blood Creatine is indicative of Muscular Dystrophy or Old age. Since Hunter is 4yrs old, I doubt it is old age.
Now you have to remember, I was told a week or so ago that Matthew may have Muscular Dystrophy.
Our dear sweet Hunter has had health problems since he was born. He is unable to gain weight, His arms and legs are like sticks, he is not growing, he has AR, Gerd, and constipation, pain in his legs, shoulders, back, arms, and head, he has Apnea, and has Chronic Infections. We have been trying for years, to find out an answer, to why he has so many health problems. Doctors have always shrugged their shoulders and treated the symptoms.
I am not a genius, but if a child's blood/urine labs were so off for years. Wouldn't you want to investigate a little more. Wouldn't you think something was up. What is wrong with doctors. Do they not even look at the labs? Why is finding the answer and maybe giving the child the right medicine a problem. I trusted this Pediatrician. I would like to think this is an oversight, but it would have to be some hell of a oversight. What would of happened if I had not seen it. Would Hunter of never gotten the help he deserves. I am so mad I can't think straight. How dare they give this sweet little boy 4th rate care.
Ryan called the head Pediatrician of the practice and left a message. Hopefully He will call tomorrow and Ryan can talk him into helping us. He seems like a reasonable and caring man. I just can't believe what we have to go through to get decent care for our family. the sub standard care we get should and probably is illegal in some way.
Thanks for listening. Vent over!!!!!
June 17, 2007
Along time ago, Ryan and I were the quintessential 21 century family. He worked and I worked. I took our 1 month old Baby, Jessica, to work with me because as Head Geriatric Caregiver I was allowed to. We were relatively well off. Three months later, I found out I was pregnant with my son, Hunter.
Almost from the start, I was sick. First high blood pressure, then Pre-Eclampsia, then Eclampsia. I had to stop working very early into my pregnancy. Hunter was born by by c-section and had severe health problems. We thought I would get better after the birth, but for some unforeseen reason I became even worse. After many months of the my GP telling me it was Post Partum Depression, I ended up in the hospital with a form of Hydrocephalus. While there, a neurologist examined me and told me that he was pretty sure that I also had Multiple Sclerosis.
After I was released from the hospital, I was given a Neurologist by my insurance. She felt there was something Neurological going on but wasn't sure what it was. The next 3 years, she basically bled my insurance dry and then was dropped by my insurance. All the while, I was loosing some of my ability to use my legs and feet, use my arms and hands, feel in my hands and feet, hear, and see. Not to mention, I had a lot of neurological pain.
During that time, I could not work and Ryan's family oriented company demoted him from his supervisory position and cut his hours to 16 hrs a week. All because he asked for two days off to watch Jessica, while Hunter and I were in the hospital. They had even approved him for the time off and he had just had an excellent review. We went from doing okay to doing poorly financially. We struggled to pay the bills and eventually went on Welfare, Ryan got a part-time job with Home Depot, and I got approved for Social Security.
Well, of course, the imaginable occurred. I got pregnant on our first vacation without our children, in five years. I saw specialists and had all the appropriate tests and screening. I had a perfect pregnancy and we expected a healthy baby boy. Matthew was born a robust beautiful baby boy. We were so happy.
Almost from the beginning, Matthew had problems with his blood sugar being low, he had problems eating, then the vomiting began, the screaming and fussiness, constipation, and he developed a rash all over his body. The hospital pediatrician said Matthew would be fine and sent us home. Turns out Matthew has a almost total protein intolerance, Acid Reflux, Gastro Esophageal Reflux, Chronic Constipation, Horrible Eczema, and problems reaching milestones due to weakness on the right side of his body. Our dream of finally having a perfectly healthy child was crushed.
About a year and a half ago, I started seeing a new Neurologist and he told me that he could see lesions on my MRI from 2003. He said he was pretty sure I had MS but needed to run some more test. This January, I had a major exacerbation, combined with all the evidence on MRI's and other neurological tests, I was finally diagnosed in February with Secondary Progressive MS. In March, Ryan started giving me Betaseron shots, every other day, to slow down the progress of my MS.
Last Month, Matthew began having more and more trouble walking. We video taped him and then took him to see the head Pediatrician of his Pediatrician's office. The Pediatrician feels that Matthew may have Mild Cerebral Palsy, but because Matthew's walk is deteriorating, he may have Muscular Dystrophy. Matthew will be seeing a Pediatric Neurologist soon and will have a lot of testing.
Most men (I am not saying all) would have left when they were faced with some of these challenges. Not our sweet Ryan!!! He has stayed with us through everything. He has grown and adapted to everything life has thrown at us. Every obstacle has made us stronger as a family.
Not only does Ryan go to work, he takes us to doctor/specialist/testing appointments, he does errands, he cleans, he doles out Meds, he gives me my shots, He takes over for me on my bad days, he cooks, he plays with the children, he helps with homework, he takes the children to school, gives the children their baths, and helps them get dressed. He is a disciplinarian but concedes and apologizes when he has been to harsh. He is willing to listen to others on child rearing ideas and try the new idea if it seems right. He respects our children's feelings and listens to them.
He is a loving father that wants the best for his family. He is more than I could have ever asked in a Father for our children. I am not saying that he is perfect but as a father he is one of the best. I thank God for him every day!!!
June 1, 2007
Jessica and Hunter were accepted to Waldorf!!!!
Praise The Lord!
I received a letter yesterday. It stated that Hunter was accepted to attend Waldorf for Kindergarten.
I called this morning to find out of Jessica was accepted.
she will also be accepted to attend Waldorf.
I am so excited. This school is perfect for them.
They will be in small classrooms. The classrooms are also set up for children with sensory and motor skill issues.
They also have a Physical/Occupational therapist on the campus.
I can't wait until September.....
May 30, 2007
Alot has happened, since I last blogged.
I'll start with me, first, I guess...
I was finally diagnosed as of February with Multiple Sclerosis. If anyone knows about this disease, I have the Secondary Progressive type. The first week of March, I did Acthar Gel shots daily because of a major exacerbation that has effected my eye sight. As of March, I have also started Betaseron shots every other day to fight the progression of my MS. I tend to feel that the side effects of the shots are even worse than the disease. I am praying that the side effects go away soon.
She had the Developmental Assessment in April. We had a follow-up meeting with the team before spring break. Jessica has a lot of the characteristics of Autism but they feel it is not Autism. The Special Education head told us that the DAT team cannot diagnose Aspergers. I am confused because Aspergers is a form of Autism. The reason why we had this assessment, in the first place, was because Jessica's Psychiatrist feels that Jessica has Aspergers. The school told us, that the Developmental Awareness team could tell us if she had it or not. The DAT told us, that what needs to be done now is to treat Jessica's autistic like characteristics. Jessica's school informed us, that since Jessica does not have a diagnosis, they will not help her. So we are basically back to square one. No help for Jessica at school. Jessica's therapist has contacted a colleague and Jessica was put on a waiting list for testing/diagnosis. We are praying that she gets in soon. As of right now, she is still in theraphy, seeing her Psychiatrist, and on Meds.
Hunter has started being treated by an Endocrinologist. Hunter has been failure to thrive since he was born. He has not grown in almost a year. The Endocrinologist sent Hunter for blood tests and a bone scan. The results are the following: According to his bone scan his bone growth is the size of a 3 yr old. Since he is almost 5 that is not a good thing. So, depending on when the insurance approves it, we will be starting Growth Hormone Shots at home.
Hunters blood tests can back okay, except for his Liver enzymes. They all seem to be high. We will have to go back in a month for more blood work, to have them checked again. The Endo wants to see if the enzyme levels are higher. The Endo is worried that Hunter may be having problems with his liver.
Hunter also had an appointment with his Gastro because he is not gaining weight. He has been put on a fat/carb supplemental drink. We are also adding olive oil to all his foods and increasing his sugar intake. If this doesn't cause him to gain weight, the Gastro is going to test him for a Metabolic disorder. We can't understand why he has a gaining weight problem. He eats all the time!!!
If you can believe it, Matthew is our child of most concern. Since birth he has has severe digestive and developmental issues. Since Matthew was an infant he has always had problems on his right side.
He didn't roll to his right until he was around 6 months old
He didn't sit up until he was 8 months old. He would always fall over on the right side until then.
He crawled at 11 months old but always dragged his right leg.
I breathed a sigh of relief when he was 12.5 months old and learned to walk. He still had problems with his right leg but the Ped said that some children had this and it will get better.
Well, in the last month, Ryan and I began to notice that his right leg problems are getting worse. He started dragging it even more and then started falling down a lot. We decided to take digital movies of the his increased walking difficulties.
Yesterday, his walking got so bad, all he did was fall down. So we ended up taking him to the Dr. Of course, his Dr. was on vacation, but we got to see the big Kahuna of the office. Which turned out to be a good thing. The Dr that saw Matthew checked out his legs, his walking, and our digital videos.
He told us that he sees increased weakness in both legs. More on the right than left. I had, kinda, seen it on the left, but wasn't sure.
He said that it could be CP, but since he is deteriorating, it could be Muscular Dystrophy.
He had us take Matthew for an x-ray today. He said Matthew's hips looked fine, but he just wants to be sure. He is going to schedule Matthew for Muscle/nerve testing. He is also going to set Matthew up with Physical Therapy. He wants to see if PT helps at all. If it doesn't, then he is going to have a muscle biopsy done. The Dr, did say that both our boys have been a mystery and in finding out what's wrong with Matthew. We might finally find out whats wrong with Hunter. To tell you the truth, I would rather be ignorant than find out something terrible. KWIM!!!
Ryan and I drove home in shock. We don't really know how to take this all. I guess we will persevere like we always have.
Sorry everyone, I told you that a lot has happened and I wasn't kidding. I hope you all made it through reading this. I am going to try to post more often so reading this blog won't be so tedious. Thank you for being you.
March 6, 2007
Princess Jessica Is Locked In A Castle Tower!!!!
It is true, the old adage, that children do not come with a handbook!!!
When I found out that I was having a daughter during my 5 month Ultrasound, I was so excited. I was going to give her so much love. She was going to get more hugs and kisses than any child had ever gotten. I was going to give her all the affection, attention, and love that I had wanted but never gotten from my mom.
After many hours of labor, the OB started to lose both of us, we were rushed into surgery, and she was born via C-Section. The idea of perfect natural birth was forsaken but she was beautiful and healthy. Ryan brought her to me so I could see her before they wheeled me out to the recovery room. I cried because she was so perfect and beautiful. I couldn't wait to take her in my arms. I wanted to hug and kiss her and never let her go. I was so in love!!!
Then the bubble burst...
After I was taken to my room, they brought me my daughter which we had named Jessica. She quietly looked around and I quietly checked her out. I had never seen such a curious newborn. She seemed like such an old soul. Like she had done this before. I picked her up and unwrapped her bunting to see all her little body parts. She did not like that very much so I quickly wrapped her back up and cuddled her. Thats when she started crying and nothing I could do could get her to stop. A nurse came in and said that she might be hungry so I tried to nurse her. She screamed and pushed at me. She did not want to latch on. After quite a few frustrating minutes I put her back in the bassinet. Immediately after I placed her in the bassinet she stopped crying. I thought maybe she was tired from her long journey and just needed some time to adjust. I believed this until the next time she started crying, I tried to hold her, and then when that didn't work I tried to feed her again. She still pushed to get away. I thought I must be doing something wrong, so I called the nurse and went over breastfeeding techniques again. The Nurse said that I was doing the right things and that Jessica just wasn't hungry. Jessica immediately stopped crying after she was put back into the bassinet. For the next three days this scenario was played over and over again. I finally was able to get her to latch on but Jessica was never a willing player. I ended up getting postpartum pretty bad at the end of our hospital stay and was put on a mild anti depressant. We were then allowed to go home.
Yeah, we are home!!!
The first month home we found out many things about Jessica's personality. She liked to be in her Boppy, the play yard, and her swing. She did not like to be held by either her daddy or mommy. She did not like to nurse. She was content if she was left alone. After 2 months of trying to get her to nurse and after much frustration eventually giving her a bottle. I decided to stop breastfeeding and give her formula instead.
Can she hear???
Around 4 months, I realized that Jessica didn't startle at loud noises. She didn't turn her head when her name was called. She didn't look at us when we were talking to her. She seemed to be in her own little world. As a test, I placed her near the kitchen entrance and then I threw pots and pans into the sink. She didn't respond at all. I was very distraught when Ryan came home from work and when I told him why he was very disbelieving. He decided to test her and so he made lots of loud noises and when he got no response he became worried also. We went to her 4 month old check up and told the Nurse Practitioner what we were seeing and she dismissed our concerns and sent us home. Since Jessica was meeting all her other milestones early, I think she saw us as panicky new parents.
At 5 months, I told my Birth&Beyond worker about our concerns and she had the county health nurse check her out. The nurse tested Jessica's hearing and told us that Jessica had definite severe hearing deficit. Jessica ended up getting the Rotavirus from another child that day and ended up in the hospital. Her Ped came in to see us and we expressed our concerns. He then tested her hearing by making loud noises and even though he made the other child cry that was in our room, Jessica did not respond at all. He concurred that there was a problem and had her have a hearing test while we were there. We didn't get the results for 2 weeks after we went home. Turns out her brain had very minimal response to the stimuli introduced. We were sent to a audiologist which did more testing. The results we received after a month was pretty close to the other findings. We talked to our Ped again and he said that her hearing difficulties from what he could surmise from the report was caused by fusion in her ears. We were supposed to go for more testing but because of our insurance having policy changes we had to go to a different audiologist.
Low and Behold!!!!
Around 11 months, Jessica started to interact a little with us. She started to say Momma, Dada, Hi, and honey!!! We were so happy. Thank God for small miracles. She still had her problems with being held but she was able to hear.
It was also around this time we realized that Jessica didn't like places that had bright lights or lots of people. She would scream uncontrollably until we left. So we spent much of our time at home. We spoke to our ped about her issues, he told us that we had a high maintenance child, and not to worry about it. She was still hitting her milestones early, so why worry.
Back To Square One...
Around 13 months, Jessica stopped talking and responding to us all together. We brought it up to her Ped and he told us that she had a little fluid in her ear but not enough to cause her to not speak or respond to us. He sent us to another audiologist for more testing. After a two month wait we finally saw him for testing. He tested her and then suggested that we have tubes be put in her ears. I asked if that would help her hearing and he told me it may slightly or it might not at all. I decided that this was not a good enough answer and declined. He was not happy and did not offer to see us again.
She Can Hear!!!
Around 18 months, Jessica started to hear and speak again. She was way behind but was slowly improving month to month. Due to her lack of speech, she started throwing incredibly violent tantrums. We spoke with her Ped at her 24 month well child appointment and he put in a referral for Jessica to get speech therapy. We were sent for speech evaluation and were told that Jessica definitely needed speech therapy and was scheduled for our first therapy session. Unfortunately we never got to go to the therapy appointment. Jessica's Ped decided to no longer take the insurance we had and so we had to switch insurances. The new insurance only let us go through the school system for evaluation. It took 6 months to get evaluated and since she talked like an 18 month old at 2 1/2 years old. She did not qualify. Though while the evaluators were testing her, Jessica got frustrated with the tests, started screaming at the ladies, threw the testing tools at them, and then curled up in a fetal position, rocked back and forth, and sucked her thumb. The evaluators suggested that Jessica be tested for High Functioning Autism.
Jessica, High Functioning Autism???
First thought, not my daughter!!! Ryan and I started looking up HFA on the internet and all the sudden red flags went up. We talked to our Ped and he suggested we see a Pediatric Psychiatrist. We took Jessica to go see one and she said that yes, Jessica has sensory issues but there was nothing that she could do for her and sent us home. 3 hours later CPS showed up and said that there was a report given that we were over medicating Jessica with her asthma medication. The CPS case was closed by the end of the day. The CPS worker spoke with Jessica's Ped and Allergist and they both verified that we were giving Jessica the right dosage for her severe Asthma.
Once Burnt, Now Shy....
After our run in with CPS we were to afraid to continue our search for help for our daughter. So for the next 2 1/2 years we dealt with Jessica's unique characteristics on our own. We did what worked best for us, her, and our family. We learned coping skills. She has issues with textures of foods. She doesn't like to be touched unless she initiates it or is asked first. Her behavior becomes erratic when there is a lot of noise, bright lights, certain smells, or a lot of activity. She has mood swings. One moment she is happy and the next she is sad. She has never slept well, she would sleep for a couple hours and then get up for the rest of the night. She likes to escape out of the house. She has never had a fear of strangers. She doesn't really have a bond with us. Sometimes we feel that she could take or leave us. She plays beside her siblings but rarely interacts with them.
The Straw That Broke The Camels Back!!!
This summer Jessica became violent toward her siblings. If they were to loud or invaded her space she would hit, kick, or push them down or into walls. She became increasingly whinny and cried all the time. She started taking off all by herself a lot more. She started throwing horrible tantrums. She started sleeping less than she already did. There were nights she didn't sleep at all. She tried to choke her 3 1/2 year old brother and pulled her 12 month old brother under the water in the pool. When we explained that she could have killed them and then they would not be around anymore. She said she didn't care, she had no remorse. She wanted to know if I was going to die. When asked why she would ask such a thing she said because she wanted me to. Ryan explained that then she wouldn't have hugs, kisses, books, or games with me anymore. She didn't care.
This was too much for us to handle by ourselves anymore. So we called county mental health and they got Jessica hooked up with a therapist. After a few meetings with Jessica, the therapist suggested we have Jessica see their Pediatric Psychiatrist. At the first appointment with the Psychiatrist she said had we ever heard of High Functioning Autism and/or Aspergers. She suggested that Jessica be evaluated because she exhibits a lot of the characteristics. We agreed of course, seeing as it has been suggested that Jessica may have this before.
Long Road to Evaluation...
The Pediatric Psych sends a letter to our Ped to ask the Ped to get a referral to a clinic that can evaluate Jessica. The Ped sends a referral to the insurance that denies the referral. The insurance says we have to go through our county regional center. The county regional center won't help Jessica until she has a diagnosis. At Jessica's school SST, we are told that there is a grant for children in need to be evaluated. Jessica is given the grant and next week she will be evaluated and hopefully this will start us on the road for help/therapy for her.