LOOK LOOK LOOK!!!
Mckmama is having another Giveaway. This time she is giving away Adobe Photoshop Elaments 8 and Adobe Photoshop Lightshop 2. Please click on the link and check out her blog for a chance to win. Good Luck!!! http://www.mycharmingkids.net/2009/12/power-of-two.html#disqus_thread
December 18, 2009
LOOK LOOK LOOK!!!
December 9, 2009
My Last Great Chance to Win a HP TouchSmart Computer. Just Check Out BooMama's Blog. She a HP have teamed up for one Superific Giveaway.
Do yourself a favor and check out BooMama's Blog and also get a chance to win this amazing computer. While there, spend some time, and scheck out her blog. You will be glad you did. Enjoy and good luck!!!
Here is a link to her blog and giveaway.
I Gone Blog Giveaway Wild. Please Check Out Nienie's Blog for a Chance to Win a HP TouchSmart Computer.
Please stop by Nienie's Blog for a chance to win this amazing computer. While you are there, chack out her blog. She has some amazing insight to read.
Click on th link,
Check out Stephanie's Blog and Get A Chance to Win a HP TouchSmart Computer
Stephanie from A Year Of SlowCooking has teamed up with HP for this wonderful Giveaway. Please stop by her blog to get a chance to win this giveaway. While there pull up a seat and check her blog out. It's really worth the read.
Click on this link, http://totallytogetherreviews.blogspot.com/2009/12/hp-touchsmart-computer-review-and-give.html
Enjoy and Good Luck!!!
Check out Kelly's Korner and Get Another Chance to Win a HP TouchSmart Computer
Please stop by Kelly's Korner and read a wonderful blog and also get another chance to win. I love Kelly's Blog. Just click on this link and enjoy it also.
MckMama Blog and Giveaway
Hey All, just wanted to tell you about a Giveaway that a blogger I have been following is having. Mckmama has teamed up with HP to give away a Brand Spanking New HP Touchsmart Computer. Please check out her blog for a chance to win. Just click on the link.
While you are there, check out her blog. She is one amazing writer, mama, and believer. Her strength, realism, and humor through the journey of having a child with a severe medical need, has greatly inspired me, and helped me in my daily struggles.
Good luck and enjoy Mckmama's Blog
August 30, 2009
My children have been raised in a non traditional Christian family. Due to the fact that I am legally blind and cannot drive and that Ryan works every weekend. We have not been able to go to church, but a few times, in our children's life. We are believers and teach our children such but something was missing. They felt it and so did we.
About four months ago, we had to let Ryan's father go, as our caregiver. His behavior became erratic and we became afraid for our children. It was hard and we felt bad, we wanted to help him, but our children come first. We hired a neighbor college girl as our new caregiver, though the change was rough, our children are safe, and she has been a blessing.
About two months ago, Jessica and Hunter started asking more questions about God and Jesus. Most of the questions I could answer, but deep inside, I knew they were asking for something more. I thought long and hard about what that was. One day it came to me, they needed church. They needed a village of believers. They needed a village of teachers. They needed a village of guiders, They needed a bigger family in Christ.
I asked our caregiver, if she felt comfortable, in taking us to church on Sundays. She was very happy to do so. We went the following Sunday, the children took to Sunday School, like they have always been there. They are excited about learning more about God and Christ. They can't wait to memorize their bible verses and go to church Sunday mornings. Everyday they speak about and pray to God.
After a month of going to church, I have realised that I had also missing something. After everything we have been through with our disabilities and health problems, I had lost my reliance on God, my belief that he would help us, that he would make our life different. I gave into the hopelessness. I never lost my faith, I just lost my way. Since I have started going back to church, God is really speaking to my heart. Every sermon seems directed at me and my faith is starting to grow again. I am beginning to find hope again.
I truly believe, that four months ago, God decided it was time for change. Ryan's father's behavior had been getting bad for awhile, but we finally had enough, Ryan stepped up, and told his dad that we had enough. Something I thought he would never be able to do. God gave us the opportunity to hire someone who was a believer, who is good with and has experience with children with special needs, and who could drive (Ryan's dad does not drive). Even though he closed one door, he opened a even wider door.
Last Friday, a friend told me about a wonderful special needs soccer program for children. I spoke with the program director and he told me that practices and games were on the weekend. Four months ago, that wouldn't even have been a possibility. I still have to ask our caregiver, if she would be willing to take the Kid's to soccer, but I am sure she will. More open doors!
July 1, 2009
Our wonderful Govenor and State Senate could not agree on a budget by the midnight deadline. So Thursday, our state controller will begin issuing IOUs to college students who are expecting grants, welfare recipients, the blind and disabled, and private companies that contract with the state to provide a wide array of services.
Counties that administer social services also would not get paid, nor would taxpayers who are still expecting refunds.
Like many other families with disabled and Special Needs Children, this will be a horrific hit to my family.
What am I supposed to tell my children when they are hungry. Sorry, we had to pay our rent, so here is an IOU that you can eat.
What do I tell my children, when the gas and electric are turned off. Sorry that the heat makes you sick, tough it out. What doesn't kill you, makes you stronger. We always have plenty of cold water now.
What am I supposed to do, when our caregiver can't come, when Daddy goes to work. Sorry children, I guess you will spend the summer indoors, watch as much TV as you want. I guess you'll be eating sandwiches and cereal for every meal. On my really bad days, daddy will have to stay home from work, and so we will probably loose our home.
What do I tell my children, when I can't afford their diapers and pull ups. Sorry kid's, hold it in.
What do I tell my children, when they need to go to their multiple monthly doctor's visits, sick appointments, therapies, and we do not have the gas to take them or that the doctor's won't see them, because they aren't guaranteed to be paid. Sorry, your health doesn't matter to the Governor or the State Senate.
What do I tell my children, when we can't afford their multiple medications. Sorry children, I am praying that you do not get sick.
I am so sorry, children. I am sorry that you inherited bad genes and have dissabilities. I am sorry that you have a disabled mom. I am sorry that daddy can't work full-time, because taking care of us is such a full-time job. I am sorry that our extended family is so dysfunctional, that they have never and would never help us out. I wanted so much more for you.
I will stay strong for you. You are everything to me. I just don't know what to do now, except to pray even more.
Please Lord send us a little help!!!!
May 16, 2009
We are waiting, to hear when and if Jessica will be going to UCSF Children's MD Clinic. It all depends on our infamous insurance. I won't even go there. It would take at least a week to write down about all the stupid referrals, specialists, meds, and equipment they have denied our children.
We are watching, Jessica struggle everyday to do things she used to do with ease. The Motrin is losing it's ability to relieve her of her pain. She refuses to use her walker, because she is starting to have arm problems also. She wants to be like the other children, so she only uses her stroller when she can't stand the pain anymore. She is having lots of down in the dumps times. She is struggling big time and there is not much we can do to help her.
Her school is not helping her the way it could be. She comes home everyday more exhausted and more in pain. She has come home and burst into tears and has cried herself to sleep due to the pain. On the weekends, I make her rest and we do not see the escalation in pain that we do during the school week. Ryan's says, that if something doesn't change soon, we are going to have to home school her next year. I feel that it would be a big mistake. She doesn't see me as a teacher, so she doesn't learn from me, and Ryan doesn't have the patience. Plus she needs the socialization and would miss the people there. I would hate to have to take away that from her also. She has already had to quit Ballet and didn't get to go on her field trip because she wouldn't have been able to make the hike. I guess we will have some hard decisions to make this summer.
I have been trying to think of something that will cheer her up. I have decided to take her to see the Hannah Montana Movie. I have always been against shows like hers, but if it will give Jessica any joy at all, I will give up a tiny bit of my all that's natural and pure parenting. Bad Mommy, Bad Mommy!!! What's worse is that I am seriously thinking of taking her to one of her concerts. I seriously need medication, I know!!!! I still will not let her dress like Miley Cirus. I gotta keep some of my standards. LOL!!!
May 5, 2009
A little over two and a half months ago, Jessica and Matthew got a flu. Our doctor had gone on maternity leave and so my children had to go see a different doctor in the office. Ryan took them in and the doctor said that they had a flu or a virus and to just keep them hydrated and dose them with cold meds. Had it been our reg ped, she would have put them on antibiotics, because she knows that they always get an infection. Two days later Jessica had pneumonia and Matthew had severely infected bulging ears.
The next day Jessica was complaining that her legs hurt and she could not walk on them, she also was complaining of severe stomache and head pain. We waited a few days and when it did not get better, we took her back to the Ped and he felt she had Guillene Barre Syndrome or Bacteria Encephalitus. We tried to explain that this has happened before, when she gets real sick, but it usually only lasts one to two days, and that we just thought this was a Jessica weirdism. The ped didn't seem to hear us. So he tried to get her into the neuro, but our insurance would not pay for her to go. Finally four days later Ryan had it out with the insurance and they agreed to let her be see. We saw the neuro and he told us that it was not neurological. That it was just a virus affecting her muscles and that she would get over it within two weeks of it starting.
We gave it three weeks and then went back to the Pediatrician. By this time Jessica was totally dependant on a walker and a special needs stroller for longer distances. He feels that she is having some inflammitory muscular process going on in her legs and stomach. He put her on adult doses of Motrin every six hours around the clock. He also put her on Prevacid. He asked us to come back in a week to see how she is doing. He said that he will probably be sending her to Lucielle Packard or University of San Francisco Children's hospital to have a team of specialists look at her.
On the pain meds, she has been able to walk more, she still is in some pain, but when it starts to wear off we are back to her being in horrible pain. Her stomach pain has not really gotten much better on the Prevacid and she is skipping meals and eating way less than usual. We tried to get an appointment last week, but her Peds office was full. So hopefully we will be able to have her seen this week.
We are totally worn out with worry. We know something is seriously wrong, we just don't know what it could be. We have our suspicions, since Matthew's geneticist highly suspects that the children and I suffer from a Metabolic or Mitochondial disorder, or a combination of both. We even asked the Ped, if her becoming so sick and going down hill so fast could be related to a metabolic or Mito condition. He said that children that have these disorders do get quite sick like Jessica. He said that he has to take a documentation as possible, so that he can get our insurance to approve us going to LPCH or USFCH.
We are sick of waiting for someone to help her. We are so afraid that in we wait much longer, she may get worse. We just want to know what is wrong with her, so we can help her. This sickness is totally wearing her out. We are so tired of feeling helpless!!!
February 10, 2009
If we had seen this Neuro, when Jessica was a baby, it could have saved us a lot of heartache!!!
Yesterday, we took Jessica to see Matthew's Neuro. Her Ped felt that she was having more seizures and wanted her to see her old Neuro again. We were like, No, we want her to see Matthew's Neuro, as he is one of the best in our county. So she reffered us to see him and a miracle happened, our insurance approved it. Whoohoo!!!
So anyway, we took her to see him. We had brought a list of all her weird difficulties since birth and he read her Medical reports and spoke with us. Guess what he said??? He said that all her weird problems were caused by PDD-NOS. That her weird problems were classic symtoms of PDD-NOS. He was shocked that it took so long for her to get a diagnosis. He told us that if he had seen her as a toddler, he would have been able to give us the diagnosis then. Damn...If we only had known!!! Our Ped and Jessica's Psychiatrist were the ones to finally tentively diagnose her, just last year. She was 6yrs old by that time. We had been to hell and back by that time. Grrrrr!!!! He just kept shaking his head in disbelief when we told him all we had gone through.
We spoke about her seizures and he feels that Jessica is having more now. He is ordering a 24hr Medication free EEG. Fun, Huh!!! He is also ordering a MRI because she is having numbness, fatigue, and pins and needles in her legs and numbness on one side of her face and in her tongue. He feels that she may have something going on in her brain. It would also explain her PDD-NOS, Seizures, Fatigue, Heat Intolerance, and weird sensations in her legs, face, and tongue.
We spoke about her inability to focus, he checked her out and he feels that she also suffers with ADD. We also spoke about the fact that her sleep and anxiety med called Clonidine is no longer working for her. He told us that after she has her EEG and her MRI, he was going to tweak her meds and maybe put her on a med for her ADD.
We are so glad that we got to see him. We finally feel like we have someone that supports us whole heartedly. He is so amazing and wants to help Jessica reach her full potential. Having a neuro who agrees with Jessica's Diagnosis, will do wonders in getting the school to help her. We couldn't be happier. Please feel free to go back to my post called " Princess Jessica is Locked in a Tower". It explains about the hell we went through trying for years to find her help.
It has been an amazing and harrowing ride, but finally it is time for us to get off. KWIM!!!!
Our life may be crazy, but it is our life!!! (stolen from John and Kate + Eight)
January 8, 2009
HAPPY BIRTHDAY TO ME, HAPPY BIRTHDAY TO ME..... I am the BIG 40!!!!!
Amazing, today I am the BIG 40. Am I over the hill yet??? LOL!!!
What a wonderful day. I got to sleep in and then rush Matthew to the Ped because he had a major earache. We then ate lunch in the car and then took our very sleepy, with Pain meds, little guy to his PT appointment. We then had to rush home so that Ryan could take a quick shower and then take Jessica to Ballet class. Right before they left for Ballet, we had my Birthday Pie and I opened my presents. I got a lovely hand made necklace, picture, and card from Jessica, some recycled toys from Hunter, lots of hugs and Happy Birthdays from Matthew, A Josh Groban CD and Dvd from Dh Ryan's father, and a beautiful Cherry Wood Jewelry Armiore from DH Ryan. When Ryan, Jessica, and Hunter came home from Ballet. Ryan and I said our Goodbye's and then went out to dinner. Ryan's dad watched the kids for us.
What a wonderful meal was had by all. We went to a local steakhouse and had a four course meal. It was very yummy and so quiet. We got a booth in the back and the aviance of the lighting and booth was so romantic. I had the best time , Ryan was so attentive and loving, and it was so quiet. With three young children, it is amazing how a little peace/quiet is so cherished!!!
The waiter brought out a brownie w/ icecream and choclate syrup with a candle on top. He and Ryan sang me Happy Birthday. Ryan and I then enjoyed a romantic dessert together.
After we paid the bill, Ryan and I went to Walgreens to pick up pull-ups for Hunter and Matthew and Cultrelle for Kids for Matthew. We then went home to all the children asleep. We now are spending a "Quiet" night together. (Wink, Wink, Wink)
This was the best 40th birthday I could have asked for!!!!
(Yes, there was some real life stuff included in my day. But that is quite normal here.) LOL!!!