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 rehab.services 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!

Trip to Phoenix

Lake Mead from Highway

After filling the car with $185 worth of gas (the down side to having a HUGE van...lol) we left Vegas.  The first stop was driving by Lake Mead.  The sight of all the pretty blue water in the desert is beautiful!   Travelling down the road started out fine.  The children were in a good mood and I was making pretty good time.  I took the GPS and had ti map me out a course to the extended-stay hotel my parents got us.  It at least allowed us to have a place when I got into town so we would not literally be homeless.

The car was full of gas, the kids were full of food, everyone that had to have a diaper was dry, and I was caffeinated.  Promising start!  When I saw the sign for the Hoover Dam I was SO tempted to take a trip over the new Hoover Dam Bypass.  Since it has opened I have not had a chance to travel that way.  I managed to avoid temptation....lol.  It was HARD!  Knowing my luck lately I was worried something would happen to the car and I would find myself stuck on the bypass....lol

I think I made it another 20 miles down the road when James said he needed to go to the bathroom. Of course there is NO bathroom available.  I see a scenic rest stop.  The scenic rest stop is near Willow Beach.  I let James out of the car for a potty break.  Thank goodness he is a boy!  LOL   I got Margaret out too and I took a quick shot of them at the rest stop.




Besides me yelling at the kids at about the three hour mark we were doing pretty well.  Margaret does really well in the car for about three of four hours and then she has a meltdown.  There is just no other way to describe her behavior.  SHe starts to scream and whine.  Then she lashes out against James and Joseph.  She was hitting them but she has also punched  scratched and bitten whatever she can get a hold of.  I had to stop the car and let her out.  We made it to Seligman, AZ.  We stopped at a gas station there.  I was down half a tank so I was going to fill the tank, take James and myself to the bathroom and pick up some snacks for the children.  By the time I left the gas station I had spent $85...lol.  That at least included gas!  While I was pumping my car a woman came out and asked if we might have left a Hello Kitty doll in the bathroom.  I said yes.  There were only a few other people at the gas station and I did not see any children.  So I waited about five minutes before I went back in because I was settling the kids into the car with their snack and I finished pumping my gas.  I went inside to look for her Hello Kitty doll and it was all ready gone!  Can you believe that?  Someone,it had to be an adult, TOOK Margaret's Hello Kitty doll.  My poor baby cried and was upset.  :(

The rest of the trip was uneventful except having to hear Margaret cry and whine about her doll and anything else she could think of.  We made it to our hotel.  The In Town Suites in Gilbert are not too bad.  They are a bit weird because there are no dishes or towels supplied.  We do have a fridge and a microwave.  I brought my toaster oven.  We will be able to go grocery shopping and pick up some things. Yea!

Ad For Nanny - Are YOU my Mary Poppins?

I left my job with the federal government at the birth of my surviving quadruplets (about five years ago) to stay home with the children.  Being born early they had multiple medical issues.  Over the last five years I have worked hard to take care of the children, educate them (home school) and take them to the various doctor/therapy appointments as needed.

In July my husband walked away from his family.  Though he pays child support he knew I did not work and there was no way I could support the children and myself in our family home.  I went to seek a job.  I was offered a job working in Phoenix.  We recently moved to the area and I am currently trying to get services and other things set up for my children.  Since I now have to work I am seeking someone to replace me.  Someone who can do all the things I did with the children and around the house.

I am seeking my Mary Poppins.  Do you think you are up for the job?

• Need to be able to work with multiples who have special needs
• Must be able to drive a Ford E-350 15 Passenger Van (like this one)
• Must be drug/alcohol free,  have a clean driving record and be dependable
• Have the patience of Jesus and VERY laid back
• Be able to conduct home school lessons
• Take the children to their various doctor and therapy appointments
• Do cooking and cleaning as needed
• Must be able to read and speak English reasonably well
• Must be technology literate (use a cellphone and computer)

Not seeking perfection. Just someone who tries!

I am not trying to scare people off but on the other hand if you do not think you are up for the job I am not interested either.  I love my children very much and I am resentful of my husband for making me leave them.  I think they still need me so my "replacement" needs to be able to handle whatever three four-year-olds can throw at them with style and grace.  

If you are still reading you are made of hardy stuff!  Are you my Mary Poppins?  Would you be able to handle a job that is hard but VERY rewarding and filled with love?

I am potentially, once we are settled, looking for a live-in position so if that interests you let me know. Salary for this position will range from $1000 to $1400 per month depending on experience and other factors.  If you are interested please send me your resume with references and an explanation on why you are interested in taking care of my children to Michelle at murigheal72@yahoo.com.  Please list in the subject line Nanny Position.  Thank you!

We're in Phoenix! (Well, Gilbert)

The last weekend of the move was SO tough on me!  I got eight, yes EIGHT, hours of of sleep from Friday morning to Sunday night!  I cannot remember the last time I went so long with so little sleep.  I am getting too old to be doing that kind of thing.  Wow!  Even now the time is heading to 11pm and Margaret just recently fell asleep.  She has been laying in the bed beside me signing Pinky Dinky Doo songs.  Poor thing!  I tried to stream an episode for them the internet at our hotel is NOT high speed (heck, it is not even medium speed...lol).  I was hoping to run around Phoenix some tomorrow but I think I may be staying at the hotel and making calls all day to see what I can do about everything. Plus if tonight is like last night I won't get much sleep anyways since the children are constantly making noises and waking me up.  Joseph woke up four times last night alone.

Tomorrow I will spend time telling about our trip here and all the other things that have been happening.  Good night!

Countdown to Homelessness: 6 Days

Today I had some help come over.  I realized that I have done pretty good in packing.  There was not a lot to pack.  I was able to get some stuff packed and boxes moved.  That was VERY helpful!  I need  a storage room now.  I think I will be able to get a storage room tomorrow.  If not then, Thursday.  That will be cutting it close since I really wanted the house cleaned out by Friday.

Still don't have a plan and I am going to have to find a place to stay when I get to Phoenix.  I have no idea what I am doing.   At least I can laugh about it today...lol.

Angry Mom

Photo Credit:  sheknows.com

Angry mom helps to describe me in so many ways right now.  The first way I am angry is at UCLA.  I still had not heard anything from them so I thought I would try calling again.  After waiting on hold for 20 minutes I finally got through to speak to a human.  I asked to make an appointment and I was told to hold again while I am transferred.  Someone picked up soon after and said they could set the appointment for the muscle biopsy.  Finally I thought!  I was going to make the appointment.  The woman said the doctor only does the muscle biopsies on Mondays and Wednesdays.  She asked which day I wanted and I said I was not sure.  I asked when is the first available appointment.  The first available appointment was October 26th!  Not only is this after I have to leave Nevada but it is right after or close to when I am suppose to start my new job.  Aaaaggggg!  So now I am not sure what to do.  I need to get the muscle biopsy done for Joseph.  I have been working on this really since LAST year and this year I have been trying to get an appointment since the beginning of August I think. Now that I am going to Phoenix and I asked the geneticist, who is wanting the muscle biopsy, if she knew of anyone who can do the procedure there.

The next thing that got me angry today is the Nevada DMV website.  I got a call from my new job in Phoenix.  I have been asking them for a job offer letter for the last three weeks.  I was told they could get a letter together for me but not until they can get my driving record.  I did not get this call until 3:30pm.  I looked online and you can order your driver's record from there.  I thought, great, and I got everything together to place the order.  When I put ALL the information into the computer I hit the process order button and I got sorry but our systems are down.  Aaaaaggggg!!!  I was told I cannot get my job offer letter until I get my driving record to them so something else to hang me up.

Finally I have noticed I have a lot less patience with the children right now.   I have turned into an angry mommy with the children.  I don't want to be like that to them.  I really don't want to be like that when I have so little time left to be with them before I have to be gone all the time too.  James cried to me several times today because John did not come by tonight or yesterday.  I am worried about him feeling abandoned when John will be gone and then I will be gone too.  James is all ready asking me to come to my room and lay down my bed next to me.  He snuggles close and I let him play the Kindle.  It makes him happy and I enjoy the time with him but this is something he has never done before.

I know my anger is related to me being stressed, depressed and anxious. Why shouldn't I be?  I have about 10 days to be out of my home.  I am not fully packed.  I have no help in getting packed.  I have no place to put my stuff even if it was packed.  I am not sure what I will be able to take with me.  I have no idea where we are going and I am worried we will be homeless.  I don't know who will be watching my children, how I am going to be able to pay for it and how/when I am going to be able to start my new job.   There are just so many things in the air. I may need to see a doctor for something to help me control the stress and anger.  This is a lot to be going through!

Where did the Motivation Go?

I was so tired when i got up at 7:00am this morning.  Since I went to bed about 1:30am that gave me about 5.5 hours of sleep.  For me this is normally enough but not lately.  I am not sure why. I ended up being able to take a nap of sorts (I was lying down and the kids played around me) from 1pm to 3pm. I got up but I am still tired.  Part of my problem I think is the interrupted sleep.  The second problem is the lack of motivation I am feeling since I have no plan. I basically have 10 more days to pack and clean out this house and ....then what?  

When I laid down for a nap I had James crawl into bed with me, then Margaret and finally Joseph.  I had the three children in the bed with me and they were all playing with different things quietly.  I thought about how much I would miss doing things like this with them.  It is not that it can't ever happen but it will be rare.  I will be gone to work and someone else will have to fill in for me.  They will get to referee fights, fix meals and kiss boo-boos while I am gone.  It makes me sad.  I feel like my children still need me, especially Joseph, but I have to leave them with a stranger while I try to make money to support us.  I have enjoyed my day with the children even though I should have been packing.

I called UCLA, still nothing!  I cannot believe I can't make an appointment to get this muscle biopsy done.  I am furious!  At this rate I will not be able to get it done before I leave town. Sigh!  I SO wanted to get this done. Then I had a call from the endocrinologist and I just cancelled the appointment.  He is only giving thyroid medicine to Joseph and to be honest he is not my favorite doctor so I am not too disappointed.  Tonight I will be looking for doctors in the Phoenix area and calling to make appointments.

Life trudges on.  I have no idea what is coming but the future will one day become my present and I guess I will not have to wonder what it will hold for me any longer because I will be living it!