Saturday, February 22, 2014

I've Been Slacking!

I freely admit it that I have been slacking lately with keeping up with the blog.  In my defense I have not been feeling very well.  For the last four months I have not felt well and things have been getting worse.  I have been complaining for the last year that my hair has been falling out and it is so bad not I can see my scalp through my bangs.  I have been battling chronic anemia since the birth of the babies but I have no idea why.  I take iron pills until I am good and a few months after I stopped I would be anemic again.  So I went to my primary doctor and discussed with her my issues.  She was not helpful because she told me to see a series of specialists. The dermatologist said it would not be something she could help me with.  I have gone to a GI doctor.  After being invaded in all sorts of ways that would make an alien abduction story sound tame the GI doctor determined I do not have issues with gluten, lactose, or have an ulcer.  I thought I had an ulcer with all the symptoms I have including the chronic anemia.  I was wrong.  So what's my problem...why do I have the chronic anemia?  So far, who knows?  I also do not know what to think about my hair.  So I have have several other appointments lined up.  One with a hematologist and an endocrinologist.  Hope to find an answer with someone.

Thanksgiving Day 2013
As for the children.  Well, they are far more interesting to talk about and I would guess that is why most people read the blog!  Near Thanksgiving I had all the children lose at least one tooth. It was VERY cute.  I love the picture I took of all of them smiling.  Joseph has both of him front teeth missing.  He had those pulled out when he was at the dentist in Las Vegas.  Then Margaret has lost her left, top front tooth.  James lost his top, left tooth that day!  Very cute!  Lots of smiles and not as much teeth!  Thanksgiving was a nice time.  We had moved into our new house near central Phoenix. I had Maddi, Dimitri and Jerrin all here at that time.  It really was a nice Thanksgiving!

I will have to cover the children's 6th birthday some other time. 

Christmas was a stressful time.  We were running VERY low on money.  I was back logged in bills and struggling to support everyone one in the house.  My oldest son was helping out too.  He had taken a part-time job at FedEx and was helping out with food and bills in the house.  Jerrin soon left after Christmas. He went back home to the 16 year old he was seeing (he is 21).  I cannot help but say what is in my heart...they do not belong together.  Because of that I did not keep my mouth closed and told Jerrin what I thought.  In doing so cost my relationship with him.  If that is how things need to be right now then that is the case.  It breaks my heart but I understand he is following his heart.  I just cannot support in that endeavor at the moment.

New Years was quiet.  John and I enjoyed our 14th wedding anniversary.  It was nice to have a little time alone.  By the end of January Maddi and Dimitri had moved out.  I hated to see them go.  I really did.  John and Dimitri were seeming to argue or have some sort of issue most every day.  I honest think John was the cause of a lot of the issues.  I don't think he meant to be but subconsciously I think he wanted to have the house to himself.  After Maddi and Dimitri left John and I were coasting along but things were tense.

We were finally able to find someone to do for the Margaret and Joseph.  We also found someone to give us some respite.  So in the 18 months I have been here I have only been successful in getting rehab. services and some respite set up along with a little intermittent physical therapy services.  My children need so many other therapy services and I just cannot find service providers here.  Just getting into some doctors too can be a chore.  I have been trusting John to handle those duties and I have been trying not to interfere but it is getting harder.  I know I need to get the children in to see doctors and specialists and the time is running out for me to have "good" insurance and the appointments are SO far out into the future!

My time is running out because I think the plan is for us to return to Las Vegas.  John and I both like it there more.  I can get the therapy services I need for the children easier.  The therapy services, especially at this age, is significantly more important than them seeing doctors.  I know Joseph is a medical mystery.  We are still at a lost.  In Joseph's recent deep muscle biopsy test and lumbar puncture we still did not find answers. Joseph's test from the lumbar puncture did not show cerebral folate deficiency.  That was good news.  In the muscle biopsy test on the other hand did not show me what I wanted.  The purpose of the muscle biopsy was to test for some of the more "common" forms of mitochondrial disease.  Oh course, Joseph tested negative for all of those.  That does not mean there was nothing found that was unusual in his biopsy!  Joseph showed an increase in positivity for acid phosphatase and he showed abnormal storage of lipids (fats) in his muscle tissue.  Not enough for the pathologist to be able to diagnose a specific disease but enough for it to abnormal.  In the end the pathologist said he could not exclude mitochondrial disease (because there are other forms that cannot be tested but are determined by ruling out other diseases) but said Joseph should be examined for an "unspecific" (the pathologist's word and it means he could not point to any one disease because Joseph's symptoms were not severe enough) metabolic disease and genetic testing.  Ironically, I have done the genetic testing.  Nothing was found there.  That does not mean I would not revisit the genetic testing again.  Tests do change and improve.  Metabolic disease on the other hand is not something we have thoroughly investigated.  Joseph has had abnormal blood work that points to possible metabolic disease but it has never been to the level that a doctor could point to some number and say....hum, looks like we have a problem with so-and-so disease.

I cannot state how frustrating it is to know something is wrong with your child.  You fight years and years to get specialist to see your child as something more than just a preemie that is having problems.  Once I finally got to Phoenix...that happened.  I have specialists here that agree with me. Something is wrong with Joseph.  As to what that is, it even has the specialists here stumped.  All I want is to know what is wrong and if there is anything I can do to help Joseph reach his maximum potential.

Sigh, okay, enough venting about Joseph and his team of doctors.

John and I had a really nice Valentine's Day.  We got to go out on a real date and have a nice time.  I was worried that things would not go well for us since I knew there were relationship issues we had to discuss but we had such a nice time.   We did not do the things we wanted to on Valentine's Day because the relationship stuff turned out to be a HUGE topic and pretty productive discussion overall.  Currently John and I feel closer to each other than we have in years.  I am happy right now and so is he. I wasn't sure if we could have happiness like that again but it seems like we can.  I think it has been helpful to have all the twenty-somethings I had in my house gone. This has allowed John and I to be more ourselves.  To have our time alone in the evening and the space to fight (and/or make up...LOL) as we wish is rather priceless.

Okay, now that I am caught up I will work on keeping the blog more up to date.  Having a desktop really motivates me to write!

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