Uncertainty of Moving

Feel like we have been in a state of disarray for months. We have been organizing, getting rid of stuff and packing for what seems like forever. Here it is May we are still in a house we cannot afford & we still do not have a new place lined up. Honestly I am not sure if we can pull this off, but I am hoping we have enough tucked away. Was hoping to have a bit more saved up, but with having to spend more time in this house it took some of our moving money just to stay afloat. Now that our plans have changed and we are making a bigger move than we had originally thought our needs have also changed. I am not sure if we have enough money to make this work.

We are now focused on Southern CA, as we feel this is the best choice for our family. I know my medical care will be better down there and my chances at seeing a specialist is a lot higher than it is in Northern CA. Patty will have a chance at better education programs and medical care as well. This is going to be a huge undertaking not only physically but financially as well.

This next week Mark will be headed down to Southern CA to try and find us a new place to live. In just about three weeks we will finish putting everything into a storage locker, we will pack up the van & head down there. Of course before we go there will be a graduation & both girls will finish school for the year.

Case of the Missing Cookies

Case of the missing cookies

The other night, I had just gotten PA out of the shower & I was in her room looking for clothes. While I was going through her drawers I found a surprise in the bottom corner of her drawer

A mystery was solved from a few nights previous.

The missing cookies

It all started few days before I found the “surprise” was on Sunday. It was PA’s sister’s 18th birthday (yes, I feel old).  On Monday one of her friends brought a bag full of cookies to school for her. She shared a bunch with her friends and brought the rest home. After dinner she offered two cookies to PA, and she promptly ate them. As the evening went on the bag of cookies was left on the counter unattended. We did not think twice about it.

The next morning we got up and when my older daughter went to put the cookies in her lunch they were gone. We could not figure out where the cookies went. When we went to bed there were 5 cookies in the bag. I know we did not eat them, and as far as we knew PA had only had the two cookies. My older daughter went to bed before us, so I know she didn’t eat them.

Now back to the drawer. That is where I found pieces of many cookies sitting in the bottom corner of her drawer.

This is not the first time we have had this problem with her stashing food. She has done it with soy sausage, cheese, pretzels you name it. However it has been about a year since she had done it.

I did go back in her room the next day after she went to school and found what I feared.

Found an old ham & cheese sandwich from Subway.

Also in her closet:
I found pretzels in the big teapot that holds her tea set.Now I am thinking I need to go through her room again. We have been lucky to this point, she has not gone back and eaten anything that has made her sick. I need to figure out why she does this.I have read a few places on line and most say it is because kids were deprived of food. This is totally not the case. I am having a hard time finding anything more on this subject. She is not overly OCD either. I am really kind of baffled on this one.If anyone has any ideas or experience or insight feel free to share.  Thank you.

People think they know autism when they see it? NOT

Something that has been bothering me for a while is someone who visited my family a while back & spent maybe an hour or two. This person told another friend my daughter was not on spectrum. Now this person has never up till that day spent time with my daughter. As far as I know she knows nothing of kids on the high end of the spectrum. Every individual with Autism is unique.  No two diagnoses are the same.  Just like each person has a different personality, each person has a different level of Autism.  Yet she is an expert & is now telling others that I am making up my daughters autism?

 

Why would someone make that up?

If she were not on spectrum why do I have a 2 binders 3 inches thick full of reports, assessments and doctors reports about her disability?

How could I manage to get services from a school district & have her go to a special pre-school for mild to moderate autistic kids for two years?

Then have her in a similar classroom for kindergarten?

School districts are stingy about who they give services too and unless your child has a definite disability you do not get anything.

 

I guess this person’s argument was my PA did not look or act like she was autistic.

 

So I ask you:

1. What does an autistic kid” look” or “act” like?
2. Can they never behave and seem “normal”?
   1. From what I remember on this day PA was stimming really bad. This person had made mention she was “just hyper.” Really? I have never seen an NT child stim because they were hyper.

 

My daughter can usually behave for company fairly well.  Really the only clues would be her stimming. Even with company she can manage some eye contact for short period of time. People who do not understand autism may think she is “normal” maybe just a little high-strung. However unless you see her on a regular basis spend a little time with her, maybe encounter her in an unfamiliar setting you will not see what we see & deal with.

 

What I would like to say to someone; who either does not believe me or doubts how it really affects us; is unless you have walked in my shoes, spent the time to get to know my girls & family; unless you have spent more than an hour or two and seen PA at her best, worst & everything in between, you have no right judging me or making a call on my child’s diagnosis.

 

In case you are curious her official diagnosis is PDD-NOS (pervasive developmental disorder not other wise specified) with SPD (sensory processing disorder), severe food aversions, epilepsy, hypertonia & chronic constipation & GI distress. PDD-NOS is on spectrum. This diagnosis may be on the high end of spectrum but it is still ON SPECTRUM.

 

Judge not, lest ye be judged.

No, I did not fall off the face of the earth.

Most of my friends and family know what has been happening since about September of last year. However those of you who may not know me so well I apologize if I just fell off the face of the earth. I have been having some major health struggles. I have been in and out of the hospital and had multiple surgeries.

I went into the hospital n October 26th of last year with simple stones in my bile duct. I say simple because for most people this would be taken care of with a simple ERCP surgery and then a day later you would be sent home. Well this being me it did not go so well. I ended up having 2 failed ERCP surgeries at one hospital over the course of a week. Then they transferred me to another hospital for a specialized ERCP with ultrasound. This was the beginning of a slew of mistakes and fumbles on the hospitals side.

After I got to the third ERCP surgery they noticed some fluid that had leaked out from my intestine and I was in a lot of pain. Normally doctors would monitor this situation for 24-36 hours before going in and doing more surgery just to see what might happen. After all it was not a huge amount of fluid that we were talking about. About 1:00am on Oct 30th a surgeon walks into my room after my poor husband who at this point had had maybe 4 hours sleep in a week had gone home to sleep. Says to me he is taking me into emergency surgery. I freaked out as he tells me if he does not go in now I will die.

I called my husband (he had just fallen asleep) told him what the doctor said and told him he had to come back NOW. He then in turn called my mom whom I had not been speaking to for a while (mostly over stupid stuff, but that it another story). My husband gets to the hospital just as they are wheeling me into surgery so he has no chance to talk to the surgeon to tell him he does not approve. I was so drugged I was in no way able to make any decisions.

I guess my mom showed up a little bit later sure she had made it too late and I was already gone (passed away). On the way to the hospital she had an overwhelming feeling she had lost me. As it turns out I did code on the table, but I came out of it. This happens in every surgery my blood pressure drops to nothing & my heart will stop (because of the carcinoid syndrome). Of course it is a little more complicated than that but that is the gist of it. I did come out of it ok. They ended up having to open me up from sternum to just below my belly button. I use the term “had to” loosely because as it turns out it was not needed.

I was in ICU for 36 hours then put into my own room. I think I was sent home a week later with a fever mind you. Over the weekend at home I get very ill again & less than 3 days later was back in the hospital with a 10.8cm abscess. I spent the next week again in the hospital and then sent home a week later with 2 drains this time to drain the infection from the abscess. This was just in time for Thanksgiving. We spent Thanksgiving at my sister’s house and had a wonderful time.

I think it was a week after than when I started to have problems yet again. This time food was not staying down was loosing more weight (I had already lost 30 pounds the previous 2 months). Found out they had damaged my pancreas & duodenum during surgery to the point where my new surgeon was skeptical if I would be able to function with out yet another surgery. Problem being this time was I was not strong enough to survive another surgery at that time. So my only option was for them to put in what is called a PICC line (like an IV only directly into an artery next to the heart) and gives me what is called TPN (IV nutrition). In other words I could have nothing by mouth except sips of water & medicine.

That was 6 weeks ago…. I am still on TPN with nothing by mouth because my body has not healed. Right now I am in a holding pattern. I watch my family eat meals, which really sucks. I want to eat. Everything smells wonderful looks wonderful yet it is all hands off. My surgeon and doctors are still unsure how well I will do if they go in and do the surgery that is going to need to be done. Let alone survive it. The after effects of this surgery are kind of scary as well. It is a very involved major surgery. They are not even sure which surgery I will need. I do know I will be in the hospital for a minimum of 14 days.

I have to say my husband has been a saint in all of this. I have not been able to do anything in several months. He has had to not only take care of the house and PA, but he has had to play nurse for me. I have to say he is darn good at it all. He has the preparation of the TPN and the changing of the tubing and everything down to a science. He is so good he flushes the ports for me with the saline and is so gentle and loving about it all. I am very lucky to have someone who is willing to do so much and make sure I am taken care of.

I wish I could say this was all over now and everything would be fine. However right now we are smack dab in the middle of it all. With so much still up in the air and the fact the doctors can not make up their minds I am having a hard time keeping it all together. I can honestly say this is one of the hardest things I have ever been through.

I am still around & fighting.

This is during my last hospital stay. The gown I am wearing was a gift from my good friend @LaurieMit and the zebra stripe is the ribbon for Carcinoid Cancer

A healthier lifestyle

Several months ago I went back in for some routine tests & to figure out why I had been so sick. Since I was diagnosed with neuroendocrine cancer almost 7 years ago now I have had issues with food and absorption of food. I have had to cut out many foods I love because they trigger what is called carcinoid syndrome (CS). I have adapted my diet over the years and I do on occasion cheat. I will have a piece of chocolate every 6 months or so. I had started to not be able to keep food in me and I started dropping weight. By it’s self is not a bad thing, but not 20 pounds in less than two weeks.

I went in to see my doctor and after I got the test results back and he was a little more than concerned. Needless to say he was about to turn my world up side down. He said there was not much more they could do to treat the cancer, but he said we could try some diet changes that might help the health of my liver & other organs. According to tests my liver was not doing well (the type of cancer I have attacks the liver). He told me he wanted me to completely change the way I was eating to see if it would have any effect on how I felt & if it would make any difference on the liver tests. He told me to eliminate all gluten, GMO’s, additives & preservatives & go completely organic. I just looked at him like he was crazy. For me it seems almost (I stress the almost part) impossible not just because of cost, but my gosh I do not see how I can eat out. I am all for eating good healthy food that is good for your body and all but come on… I do still like to eat a hamburger at say Red Robin every once in a while. Or go to Denny’s for a family dinner. On this new diet I fear I will never see the inside of a restaurant again.

He went on to explain all the reasons he thought this would be good for me and well he made some really good points. I am not sold on all of it, but figured I would try to implement parts of it to see if it would make a difference in how I felt. I asked him if he had to pick a part of the new diet he felt would be critical for me to do what would it be? He said at the very least to go gluten free and cut out as many preservatives and additives as I can.

I figured I could handle that. It has proven to be more difficult than I thought. Gluten as you know is in just about everything and you really have to real labels on everything. Over the past two months I have done pretty well. I have done quite a bite of reading on cooking & baking gluten free. I have tried a few recipes & altered a few (just because I can not leave well enough alone). I am still figuring out what I can and cannot eat. I still have quite a few restrictions on food just because of the carcinoid syndrome. Add those to this new diet and well it would seem to many people that I am very limited. I guess I am in so many ways, but I am learning to put variety into my diet where I can.

Now I am not perfect by any means and I do have a huge obstacle I am still trying to overcome. That one obstacle for me is Diet Coke. I know it is probably one of the worst drinks a person can drink. I know this already and I do not need to be reminded thank you. I have cut way back. I am limiting myself to one can a day and we are not buying the name brand. That way I am not as tempted. I actually don’t like this off brand diet pop and I think the only reason I am still drinking it is so I do not have the cold turkey effects of the caffeine. Thinking by next week I can be off the pop completely (I really do not like this stuff LOL).

After two months on this diet I have honestly not cheated. I have had 2 times where I have had something I thought was gluten free and turned out it was not. I do know that when I had the gluten I knew it and actually became ill from it. Which prompted me to go back and check the ingredients to make sure & yes there was gluten in what I had eaten. I have not been tested as of yet (thinking maybe I should) but I have noticed I have not had as many food related issues. I also have dropped about 20 pounds and kept it off. Of course I have a more to go in that department but it is a start.

I think I am convinced enough to continue with the gluten free diet. I have seen some positive changes, nothing earth shattering but convincing enough to keep going. I do like the idea of getting as healthy as I can get. I know it is not going to cure my cancer, but I would like to have a good quality of life.

The Tell-Tale Hair

My husband and I were on our way to my Sandostatin injection (the injection I get every 14 days for my Neuroendocrine cancer) at the hospital when we started talking about my hair & the fact I had been growing it out. I told him how much better I liked my hair long, but that it was so much work that it takes twice as much time & energy to do something with it.  However, I have kept it short for the past 6 years or so purely for the wash & go factor. He posed a question to me that I had never really thought about. He asked me if I wished, at times, that the chemo would make my hair fall out. Hmm….

I have never really thought about it but in a lot of ways, yes, I do. To be clear, I am grateful that I am lucky enough to have kept my hair & that I “Look healthy”.  I say it like that because it really is a double-edged sword. The types of cancer drug I get don’t cause you to lose your hair, or if it does happen it is very rare. When I go into the oncologist’s office I don’t get the same treatment as some other people who are being treated for cancer because I don’t look like I am, so therefore it must not be that bad.

Typically cancer patients would get a form they filled out to rate their symptoms they have with their treatment, such as how tired they are, if they have nausea, or vomiting, and other side effects. I don’t get this form to fill out, even though I have many of the the same side effects as traditional chemotherapy patients, minus the hair loss.  The exclusion me feel as though my cancer doesn’t count and that my side effects are less important than everyone else’s.

The double edge sword is that sometimes people don’t get it. They see me for how I look on the outside and they have a hard time understanding I have cancer. That even though I look good on the outside it doesn’t mean I feel good.  I don’t want people to feel sorry for me, but just once I don’t want my illness to be questioned: “You look so good… You can’t be that sick.”

So yes some days I do wish my hair would fall out.

Cheese and Lettuce Delight

Tonight PA decided she was going to cook. I heard her in the kitchen making all sorts of racket. I called after her and asked her what she was doing & she said “I making Cheese  Lettuce Delight momma.”

So I went to see what she was up to because there was a lot of noise in the kitchen and this usually is not a good thing. Sure enough she had the lettuce and cheese out. She asked me for a plate, so I got one for her. Then I went to grab my camera, because this is always something to document.

The following is in her words (as far as the explanation under the photos).

“First put lettuce on plate”

“Then cheese on it”

“Have to put in bowl cause it messy”

“Stir it up”

“Now eat it mom. I make for you”

Of course she made it for me, after all it is green and she would never eat anything on purpose that was green. Not only because of the color but because of the texture. I have to give her credit. She did do a really good job. She also did a good job telling me what she was doing. I guess sort of a lesson in being able to explain something in steps. Something that is rather difficult for a child with ASD (autism spectrum disorder ).