To the Doctor

Doctor Office Selfie

Thankfully this was not for me.  This visit was for the children.  I kept getting calls from Medicaid for the children.  They kept insisting I take the children in for a well visit check. They were busy reminding me vaccines are important.  Yes, they are but we will agree to disagree on that one.

This turned out to be a good time for me to visit the doctor anyways. I had wanted to talk to her about Joseph and his skinny, slow-growing self. Sigh!  We headed off in the morning to see the doctor. It was a 35 minute drive across town on the interstate.  Margaret sat in the back crying and whining the entire time I am on the highway.  I am not sure where this fear came from but I wish it would go away!

We make it to the doctor's office and there is a small playground.  I have to promise the kids I would let the play afterwards as I shove them into the office door.  I yell at everyone to take a seat on the well side of the office but they kept getting drawn back to the sick side. The LAST thing we needed is to pick up some illness visiting the office. That is why I did not want to visit the doctor yet but the calls from Medicaid were harassing!



Thankfully the Little Mermaid started to play on the well child side and the children stayed seated!

We got back into the patient room.  I swear it is the smallest room I have ever been in!  There was not enough space for me and the kids to sit much less the doctor! Kids were sitting in the floor playing their Kindles.  It was SO loud in the room!  LOL

The doctor comes in and we discuss Joseph's poor weight gain.  She said he had been putting on more weight recently.  She told me to keep it up.  I asked about tube feeding and she said we are not quite there yet. I am pleased because I really do not want to tube feed Joseph.  I think there is too much of a risk of infection. We discuss James's weight.  He could stand to lose about 4 pounds. Margaret is skinny but okay. If she is like any of the other ladies in my family I am not worried about her.  ALL women in my family are fat.  It just varies by degree.  I am one of the fattest while my aunt is rather skinny compared to the rest of us.  So I think Margaret will one day weight plenty.  No reason to rush things!

Right as they were finally settled we were called back to get weights and measures. Isn't that how it always is?  LOL   Kids take off their shoes we height and weight check. James weighted in at 72.4 pounds and 54 inches, Margaret was 48.4 pounds and 49.5 inches, and Joseph weighed in at a tiny 35.8 pounds and 45 inches!  

We discuss other issues and talk about some community supports we could look into.  Overall it was a nice visit with the doctor and I am grateful that Joseph never had to go to Urgent Care or the hospital this winter. Flu is at an all time high here. John was sick with Influenza type A but it did not really bother the kids or I so I think we are immune to that one. Now we just need to stay away from any other sickness until cold/flu/RSV season is over in about 8 more weeks.  Keeping my fingers crossed!

After leaving the doctor's office the kids wanted to play with a little girl (15 months) out on the little playground.  Since I promised I said yes.  The grandmother was outside watching the little girl.  She said she was happy my kids came along and would play with her.  They played for about 10 minuted before the mom came outside.  Then she told me that her daughter was sick.  Don't you know, no good deed goes unpunished?  LOL   Luckily I had hand sanitizer with me. I made the kids use it and get in the car.

Playing with Frisbees in the Park

I went to pick them up some cheap sandwiches and water.  Then I headed to the park for them to play.  There was no one there.  They got to play with their frisbees and basketball.  They had a blast!  They ran outside in the 90 degree weather for an 1.5 hours before I told them we needed to go.  Joseph had stopped sweating so I knew he had gotten too hot. I rubbed him down with ice and we left.  Did you know those darn kids did not fall asleep for 2 hours after bedtime!  I thought I had worn them out.

Got a picture of everyone before we left the park.

Has Hell Frozen Over Yet?

Photo Credit:  america-report.blogspot.com

I know my husband (he left at the beginning of July) has been reading my blog.  At least occasionally.  I know because of things he has said.  I am surprised!  He had not read what I wrote before.

John arrived at my house this evening.  James was SO excited!  As I was getting ready to leave I asked John if he could take off from school on Friday so I could go and see my regular doctor to get refills on all my maintenance medications before I left town.  Plus I was hoping he would take the children early so I could see about trying to get a moving van and get the house packed and moved.  John said he would not be able to get Friday off.  It was a high demand day for subs (what difference this makes I have NO idea) and that progress reports had to go out.  He did not want to leave that duty to a substitute.  I kinda understand that one but on the other hand it is not every day that your wife and children are leaving for another state.

John said the best he could do was Thursday.  He said he could take half a day off on Thursday.  I asked if the whole day was possible but he said no.  So I asked if he could show up early (instead of 6pm) when he picks the children up on Friday.  John said why was I asking for things at the last minute.  That he has plans.  Why didn't I ask earlier?  First off, let me think for a moment, I may be a bit scatter brained lately because of all the stress I am under.  It could be because I have been busy making calls and trying to get information together to take to Arizona. Set up doctor appointments (here and there).  Get the children and I to our needed appointments over the last three weeks.  Make calls to try and keep us from being homeless in Arizona.  Writing in a blog asking for help from strangers because my husband, and father of the children, is not helping in any way with the move.  I am sorry but I have been a bit busy!

It had dawned on me last night that I would need somewhere to stay Sunday night.  I asked John tonight if I could stay at his place on Sunday with the children.  His first response was no.  He said he was not comfortable with it. What???  I was stunned.  I took a moment to get myself composed and said I am the mother of your children, your wife of all most 13 years and you cannot let me spend one night at your place since I have no where else to go???   He sat there and was thinking.  After a bit I told him never mind.  If it is going to be that hard of a decision then don't worry about it.  He said he should be able to think about my request since it was another last minute item I am bringing up to him.

Then he said something along the lines of why would I have thought he would just say yes.  Well, it could have to do with I would have said yes so I NEVER thought he would have said no or had to think about it. I walked out of the house.  I stood outside the door for a moment and then realized I had forgotten a post-it note I wanted.  I went back inside.  John said he was ok with me staying there.  I told him, again, not to worry about it.  He said he was not going to get in a fight with me.  He would leave before it came to that.  I said, "You are not leaving.  You are going to spend time with your children. I am leaving."  I walked back out the door.  As I am getting in my car he comes outside and says, "I would like you to stay.  It will be the last time I get to see the children."  Notice there was no mention of me.

I left.  I was heartbroken.  John has been so cool to me lately.  James telling me about some woman named Shawn.  His refusal for me to come to his place, the fact he smelled SO strong of cologne (I did NOT get) tonight the smell lingered in my house and he was texting makes me think he has some other woman in his life.  This hurts me.  I have asked him to get couples therapy with me.  I wanted to try and keep our family together but I am not getting that same feeling from him.  I can't be the only person trying to fix what is broken.

I called and talked to my mother.  Normally I call and talk to my friend Krissi but she has been busy with her own family drama so I have been bothering my mother.  She forwarded me a text tonight after I had left the house.  It was from John.  I did not know she had been texting him.  It said:

Cathy, I have helped Michelle with anything she has ASKED me to do.  If she does not ask, I will not do it.  Please do not respond to this message, and please do not contact me again. Thank you.

At least he was polite.  John and my mother have a very strong dislike for each other.  The part of this message that bothers me the most is John saying he has helped me do anything I have ASKED him to do.  That is NOT true.  Plus, wouldn't a TRUE man volunteer to help?  I had told him in the beginning I was not sure how I was going to make this happen.  I was worried.  John did not help.  He told me, "Don't worry. You will get everything figured out.  Wasn't it you who said where there's a will there's a way?  If you really want this job you will make it work."   I did say where there is a will there is a way.  The problem is that the way can sometimes get REALLY ugly!  If it was just me that would be one thing.  I could ride it out.  It is NOT just me though.  There are THREE disabled four year olds that have to come with me.  I have no problem suffering for my mistakes or judgments in life.  On the other hand I don't wish for my children to share my punishment.

As I said too, if John was a TRUE man wouldn't he have volunteered to help?  He was the one who left the house and left us financially stranded with no warning.  At least my first ex-husband did not do that.  I was seething with hate being cooped up in an apartment with him for four months but at least there was an exit plan when we BOTH left.  If John was really happy that I got this job in Phoenix wouldn't you think he would be excited for me/us?  He would be over and asking what he could do to help?  That the move would benefit ALL of us (financially).  Instead of being cheerful and helpful I have to ask, no beg, for help.  Even when I ask for the help it is not what I want.

After talking to my mother and telling her about John telling me I cannot come over to stay at his place Sunday night, and though he changed his mind, my mother was as surprised as I was.  She said for me not to worry and I could get a hotel room.  She said her and my dad would pay for it.  I am thankful.  After finding out his attitude I don't want to ask for anything. Part of it is pride but part of it is because I don't get what I am really needing.

I wanted to be there for John.  I wanted to love and be with him but how does he expect me to do that when this is how I am being treated?  Worse yet, this is how he is treating his children?  I am not sure what the future will bring.  I am not sure how I am going to make things happen but somehow I will work it out.  I will ask EVERY stranger I can find for help if I have to. I will do this without John.

If I have to ask John it may well be a cold day in hell before that happens.

A moment of contemplation

As I sit in my kitchen listening to the loud swishing sound of the water flowing in my dishwasher I think about the people I chat with on Facebook. They are from all around the country, leading their life as best they can but we all have one thing in common...we have a child with a disability.

I know I and many other women (and a few men) chat about the disabilities our child is facing. We talk about the struggle to find a diagnosis when they start exhibiting behavior that is not normal for them. As we turn from doctor to doctor looking for answers we tend to either find more questions or no answer at all. Some of these women I know have been accused of Munchausen syndrome by proxy by local school districts because they insist there is a problem with their child. They want to find the root of the problem but all they are getting are doctors who will only treat the symptoms.

It makes me sad that so many people are turning not to a doctor but to other parents in hope of finding an answer because the doctors just don't know what to do. This is the case for my little Joseph. The specialists are at a loss for what is wrong with him but they treat him symptomatically and pat me on my head and send me on my way. With all we have at our disposal in modern medicine we should be able to make a diagnosis.

Trip to Utah

Tuesday afternoon we went and picked up the rental car so we could get the children's car seats moved to the rental car. To move over three seats is not horribly hard but it does take time and when it is 105 degrees outside it is not fun. On Wednesday morning we got up early. I gave the children a bath while John made breakfast. Once the bath was over I took the kids downstairs and John had a yummy breakfast prepared. We ate, loaded the children in the car and hit the road.

St. George is only about 2.5 hours from Vegas but they are on mountain time so one has to take that in consideration when you make an appointment. I have to leave at least 3.5 hours before the appointment time. Even though it is only a 2.5 hour car ride keeping 3 hyper kids tired up in a car seat is just asking for trouble. Apparently two hours is Margaret's limit. For the last 30 minutes of our car ride we got to hear Margaret scream. Each time she screamed she caused Joseph to cry and then James lashed out hitting Margaret and telling her to be quiet. What a great last 30 minutes before we get to the geneticist office...lol. We arrived a bit early. The kids were antsy since they wanted to run around.

We met with the geneticist. The doctor said Joseph may be suffering from a genetic condition but the doctor doubted that was the case. The other possibility is a fatty oxidation disease (FOD). This is something that should have been caught at a newborn screening. So the doctor does not think this is Joseph's problem but we went ahead and ordered the test because it only involves blood work. This is also a test Johns Hopkins will probably want to run so we might as well do it now.

The geneticist told me I appeared to be unhappy with the medical establishment so far. The short answer to that is yes. Joseph is 3.5 years old and we have seen numerous specialists and NOT ONE OF THEM can tell me why Joseph suffers from the severe neurological problems he has (no indepenent walking, hypotonia and mental retardation) and not one of them seem to care. To them my son is just a number because there are only a few specialists in Las Vegas and they are SUPER booked. Why shouldn't I be unhappy? I want more for my son!