SO WE ARE WAITING & WATCHING

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!!!

Stayed Tuned!!!!!

Since I am fairly sure that no one reads my blog anymore,

I am going to post our newest trip into hell!!!

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!!!