TV series Parenthood

I started watching the tv series Parenthood about 10 days ago. My sister and I had a deal, she watches Supernatural-my favorite and I watch Parenthood. See she does not like that kind of show it and it took me and my daughter over a year to convince her she will love it. Now she is mid season 3 and I think we have finally accomplished what we set out to do, find another fan!

I am fastly approaching season 4 of Parenthood so I have had some time to reflect on this show. I will admit I am loving it, I will admit that it has made me cry more times than I would care to admit and I will also admit my daughter who was set to hate the show likes it a lot.

Watching a show that shows parenthood for what it is, love, ups and downs, hard work and total amazing payoffs, is very nice. I like seeing other people have challenges that I have faced and watch how they go about it. I think it is neat that a tv show would bring a disease like Asperger’s to the forefront. Any parent loses their patience with their kids. Any kid can be annoying at least some of the time. That kid has no ability to control those things so discipline is different and regular day to day has to be learned, can’t just do what comes naturally with other kids as this may cause major meltdowns.

Being a parent of a special needs child I thought I have seen it all. Clearly I have not. Watching how these parents must learn to deal with their child, special schools, special rules, special ways to make eye contact and the need to have to cater to the child’s needs opened my eye’s to something I had only heard of but did not really understand.

I love how the whole family interacts with one another, the closeness, the differences , how the siblings and parents work with one another to the cousins loving and fighting with one another. I will have to say It is worth the watch.

I can’t decide who is my favorite character yet. I like them all equally I guess. Crosby and Zeek make me laugh the most though.

So not sure what I will binge watch after this but I have a few seasons to go while I decide.

Gotta love my Netflix addiction!

Not even sure how to feel!

Just over two years ago, we found out my husband had terminal brain cancer. During that time in the beginning of him fighting this illness we researched every possible thing to help him beat that disease. During that time we read a lot and some of the stuff seemed promising some did not. We followed strict doctor’s orders and we discussed all of our findings with him regularly.

I know this is controversial, so I don’t always bring it up with everyone I speak with. I don’t share this information with all my friends and family as I know some would agree completely and others would disagree completely. Well a friend of ours insisted that we get the Rick Simpson Oil( it is really concentrated marijuana into an oil) I can be consumed by eating, or smoking and there are many ways you can get it. In our State is is not legal yet medically although it seems to be heading that way. We were never able to get the oil as its is not readily available. We spoke to his doctor about this and they stated I can’t tell you to smoke it but I sure will not tell you not to. If anything it will help your appetite and will be a good distraction from what your body is doing to you.

Our daughter was 20 at the time and her getting her Dad something to smoke was not difficult at all.My husband was a recovering drug addict. Staying clean was one of his biggest priorities and getting him to take pain medicine was just about impossible. I was working part time random shifts outside of our youngest daughter’s dialysis treatments and both of their many appointments. One day while I was working an evening shift my husband and daughter decided to smoke. They went to the back room of the house so the other two kids would not notice and they smoked a little joint( by the way it helped a lot but of course it did not cure him). Out of nowhere his mother showed up(we used to call her PopTart as she always just popped up-that was her way of seeing if our house was dirty or a way to catch us being grown ups)-perhaps if she would have been so concerned when her children were growing up they would not have all had drug and jail problems- but that is for another story) So now she comes  in my daughter says hi and goes to her room as to try to diffuse the uncomfortableness of her grandmother showing up when she is smoking with her Dad. She did not say anything to either of them. She visited for her usual hour and was gone.

The next morning I am in dialysis with my daughter. She calls me. She starts flipping out on me for 45 minutes, how dare my daughter smoke illegal weed with her son when he is sick. I said hold up, he asked for it. He is 48 years old and you really don’t understand the doctor said its ok and it will probably help him. She proceeded to tell me how terrible my daughter is and how she will never forgive her for giving him drugs. I told her that she is being crazy, that stop yelling at me I was not even there and my daughter is 20 years old, stays home all day taking care of her siblings and your son( who would fall down regularly, need constant medication, would need assistance to bathroom and she actually had to bath him as he would not let me do it) My daughter did everything for her Dad like a nurse would do and everything like a daughter would do. Her Dad thought she was the greatest in the world. So after 45 minutes I finally tell her whatever I don’t really care what you think my daughter is a good girl and she is doing that to help her Dad not hurt him. I told her that she should not be so judgemental when her children are no bargain.  She said she was not mad at me only that girl. I got annoyed and hung up. Of course I went to the bathroom and cried and I was so angry.

I did not want to tell my husband as I knew doctors only gave him days to months to live and I did not want him upset with anyone. After 3 days of stewing about it, I could not help but to tell him. He was so angry. He called her and told her that is terrible and that he would choose me and his kids over her anyday and that if she wanted to be part of our lives she needed to apologize. She did not and 3 months passed where we did not speak to her and she did not speak to us. Then the steroid debacle happened and he kind of went crazy. I have written about it on another post if you want more details. Well one day he said I am going to call that crazy lady and tell her every bad thing she ever did. I tried with anything to stop him. He flipped on her and well again I was the bad guy(mind you who did nothing either time). Now the months are passing. His chemo ended his radiation ended and he was on a very manageable dose of steroids. He was no longer acting crazy he was just sad. I thought I can’t let him leave this world without the love of his mother. No matter what an awful person I think she is some part of him really loves her anyway.

I decided to call her, I apologized for things I did not do and kissed her ass so she would go see her son. She made a big deal that she did not want to come to our home and that I should drop him off at her house. I told her I will not do that, he can barely see, he can barely walk with assistance and he can’t get to the bathroom on his own. That he has accidents and its best he is comfortable you should go to the house and visit him. She waited three weeks and finally showed up. She was rude to me and my daughter but she was super nice to him. I was glad she was nice to him as he felt better when she left. He told me see she is not mad at you. I did not tell him what she said outside and the rudeness she showed towards all three of the kids. She decided they were all bad I guess.

Once he passed away our relationship with his mother ended. She did not come to his memorial she did not help in anyway with his final expense and she did not offer to do any of this. She simply was rude to her other son and said I don’t know why she is doing the memorial at your home she is this and that. I did not do it at my home for my kids, for myself. His family has many thieves, many people who will not care that is my kids home and try to take things that were his. I can’t guarantee that is how it would happen but my instincts told me this was not a great idea and his brother was more than understanding. I paid for everything, I took the burden of telling all friends and family and of course I had to deal with my own emotions as well as my childrens.

Now it is almost two years later. I have my feelings about her. My family does not understand how deep rooted these emotions are. My Dad says I should not even think about her. Sadly I can’t help it. She was wrong the whole time and all of her kids did hard drugs. Two of them still do hard drugs but she said terrible things about my baby who did everything for her son. She gave up her late teens to care for him when a lot of kids her age would have said hire a nurse. She never took that into consideration she just bad mouthed us.

Yesterday my youngest daughter is talking to her cousin and we invited them over. He is 14 years old and they are living in her house. They have come across their own hardships and they basically had a choice live with her or be homeless. They chose her. So when my nephew walks in the house he is wearing a tank top with Pot Leaves all over it. I said Um nice shirt. He said Grandma got it for me. I said does she know its weed. He said yes she knows. So I said to his parents um nice shirt, they said yeah my mother got it she liked it for him. So now my 20 year old who is now almost 23 and had the worst feelings behind all that was the worst devil ever but she buys this shirt for a young teen who was born addicted to heroin but she pretends like we are terrible people when we don’t drink or smoke or do anything. It was a time he was sick and we were trying to help him. I changed the subject and tried to enjoy their company but I was hurt by seeing this.

When they went home I tried to forget but it was bothering me all night. I have so much more important things to worry and concern myself with that I won’t let this consume me, but I know for sure forgiving her ever again is not in the cards. I think if my husband could know this he would be crushed that she said all those awful things about us and now she is promoting it. I will add that she is a Jehovah’s Witness and is always judging someone for not being like her. I almost want to call her and tell her hey they are fighting for medical marijuana I hope you go out and vote as I know their religion does not allow them to vote, they can collect from the government but they won’t contribute. I guess that is for another story as well. I will do my best to let this thought leave me this morning and I will remember that she kept telling me I know I will see my son whole and well again. Jehovah tells me this, so if she is right(which my religion does not tell me this) she is not going to be to happy because if he is whole and well he already knows how crappy this all turned out.

BK Virus and Kidney Transplants

My daughter received a kidney transplant in 12/2015. She is now 12 years old and she was on dialysis for 8 years prior to receiving her transplant. She has other health issues, besides her kidney disease and it was a combination of reasons that she needed to wait that many years for a transplant. We knew going into it that Kidney Transplant is another treatment option. One of our dialysis nurses constantly reminded us of that. I did not completely understand why until now. She  wanted us to be prepared that although some things will get better others may not. She also saw other patients go through different battles and all of them did not have the best outcomes. Being a medical professional is not simply having the job of hooking someone to a machine, or taking blood or performing a surgery. It is so much more, it is learning to help people understand it all, help people accept it and so many other comforting things that just go along with most compassionate people. I have watched a nurse love my daughter back to health.

My daughter had a failed transplant when she was 5 she was one year on dialysis and all the signs showed it was a great time for her to receive a transplant. We all tested to see if any of our family members could be a live donor. This was not the case and she went on the National Donor List. She received the kidney, surgery went great, first night went great and then the urine output slowed down. Then she stopped breathing then came intubation and a very long recovery. During that time the kidney failed and she wound up in a medically induced coma to try to heal her. She had surgery they removed the failing kidney and back on dialysis she went. During that time one of her dialysis nurses came daily to give her dialysis and she would read to her, love on her, talk to her and pray for her. She not only did her job but she went miles above it. That was the only time her Dad and I would feel comfortable to go home together, shower and pay a little attention to our other children and family things that needed to be done like laundry every now and again and giving the other kids some kind of stability. Luckily for us our kids are amazing and they took care of cooking and cleaning and going to school and just doing what they would do if we were home. We were fortunate in those ways.

After the failed transplant, her Dad and I told everyone we will go to dialysis as long as needed or forever to not ever see our daughter like that. She was truly suffering and we very easily could have lost her. We did not and we gladly went to dialysis for years. About 5 years later the doctors started talking transplant again. We told them we will make ourselves ready when you believe she is healthy enough. They did testing each year until they decided it was time. They saw it was time right around the time we found out about her Dad’s health failing him, he was diagnosed with terminal Brain Cancer and I was not mentally prepared to watch his life go and then risk a repeat of the first kidney transplant. I told her doctors my concerns and they agreed that I needed to be prepared so that I could continue to be her caregiver and support.

About 1 year after my husband passed on, the doctors approached me again. They said that health wise she is ready for another transplant. Some of the issues with being on dialysis for so long was becoming obvious and moving forward to transplant was what was best. They also told us that since her age, the amount of time she has been on dialysis and the list and the amount of health issues she is having she will go to the top of the list, not first as she was still doing ok with dialysis but the top meaning could get a call same day they activate. We joked and said that won’t happen we are moving in two months, we will get the call five minutes after we get our moving truck. Well we were close, we got the call the night before, it did not work out the kidney was not healthy enough. We went home , went to dialysis in the morning and prepared to move that afternoon. We moved went to sleep and 5 in the morning we got the call again.Transplant went great, Kidney started working right away and we did not experience any issues that we dealt with the first time. This time we saw what successful transplant was all about.

We followed strict lab schedules and medicines. On time without fail everyday. Followed rules, drink tons of water!!! We did and continue to do what our doctors recommend. After the first month they did Viral Studies through blood and urine tests. They found she has the BK Virus, which is the number one reason for loss of a transplanted kidney(graft). At first it was not high in her blood and was just high in her urine. Then it started creeping up in her blood also. They reduced one of her Anti-Rejection meds, Then eventually they took her off of it. Then she started having dark and bloody urine. She spent about a week in the hospital and she wound up having angioplasty and a stent placement in her Ureter.

On this past Friday she went in for Labs. I was waiting all afternoon to hear about her lab work, of course  hoping for the best. I did not hear so I said that is probably good news, but I left a message anyway. On Monday I waited to see if they would call but they did not. Now I  said one of two things, they are totally slammed with kids that need more attention right now or they are deciding what direction they want to go with something. Yesterday I got a call from the transplant coordinator, I missed the call but her message was that she was still trying to get some information from the doctors and that she would call me in the morning. This morning came and I got a call from her Doctor. The BK is higher in her blood. Even though they took her off the one anti rejection and reduced the other and had strong antibiotics it did not boost her own immune system enough to reduce this viral load. So now tomorrow we will go to the hospital in the morning for labs, iv fluids and a medicine that will hopefully attack the virus and then more iv fluids. This medicine is pretty much a last resort at fighting this virus. This medication is also toxic to the new kidney. We will of course keep positive and hope that somehow she beats the odds, knocks out the virus and keeps the kidney. But reality has already set it that that might be the case and she can very well lose the kidney. I would love to hide in my room and cry right now but that will just scare her and right now she totally understands it that one way or another we will fight it with everything we have but we are not guaranteed a win.

On a good side though, she was approached by an organization called a second wish, my daugher was approached by Make a Wish when she was very little. She was granted a wish when she was 3. We went to Give kids the world and it was amazing, Sadly she was way to young and does not remember a thing. We have pictures and I try to show her and spark a memory but that does not happen. Well we met with the founder of this organization and she was amazing. My daughter wished to go to New York, She wants to shop, and go to shows and or museums and parks and she wants to meet her Big sister from her Dad that she has never actually met in person. We have this crazy relationship on the phone, computer and text but situations have not allowed us to be together in person. This wonderful lady is putting together this trip that surely will be a highlight of her childhood. So with all the good comes bad and with all the bad comes good.

I am hoping tomorrow goes smoothly and that this medicine does not make her feel like crap. Doc said it should not, hoping it all goes ok and that her kidney finds a happy balance. But no matter what the outcome she will have me and her brother and sister and other family members that adore her and will do whatever to make her at peace with whatever her body does.

My Dog is a Bread thief….

The picture is puppy Larry. He was about 3-4 months old there. He was still a baby and a very quick growing baby. The kids had total control of raising him and he is sweet and playful. He just does not know how big he has actually gotten. He is about 2-1/2 years old now. He is an Emotional Support Dog and that basically makes him a service dog as he provides the service of supporting us emotionally. Not much different than any other dog except he must know how to sit on command and know his name and lay down and things most dogs can easily be trained to do. He must also have a good disposition. He must also have some documentation proving that he has been seen by the vet, has shots and documentation from a mental health professional stating that you or your family member needs this dog to have a better quality of life. This is true for my children and myself as our lives have had some majors events that could stress out the strongest of people.

My daugher has many health issues you can read about in my other posts if you like. She is interesting and inspiring. My late husband got Larry for us. He had brain cancer and in the beginning of him having that disease he started doing things and saying things that either were not true, happened a long time ago or perhaps a bunch of different events mixed together. The kids and I learned quickly to not pay to much attention trying to correct the stories or make them closer to the truth.

One day we go to Pet store . My husband and my son and youngest daughter were to run inside and get some crickets for our Bearded Dragon and look and see if they have any cute hermit crabs as we already had the habitat. Me and my oldest daughter stayed in the car. We were chatting when he came out and he came out with other people who had puppies. He showed us the puppy and said he is cute, I named him Larry and we get him in so many weeks. I pat the dog on the head settled the family back in and went home. We get home and he never mentions the puppy that night. Not the next night and then all the sudden he remembered and he is like I have the phone number we need to call Jessica Wednesday  night or whatever was the date. Me and my oldest look at each other and we are like who is Jessica and then my son comes and tells us it’s the girl with the dog. Sure enough he took whatever money he had and paid for that dog. So now we can’t not get the dog, we know he is fighting terminal brain cancer and the kids already want the dog so, you know we got the dog and we had to call him Larry. That was a must he told the girls to please start calling him Larry so when he comes home with us he will already know his name.

Well now that you know how we got Larry I am sure you can understand that training went just as well as getting him, confusing and not consistent. He learned to go outside easily and he learned how to be part of our family very quickly. One day I go grocery shopping. I bought some hot dog buns. Next thing I know there is Larry running around  with the hot dog buns in the back yard. I get them from him but the obsession started. 2 and 1/2 years later, and so many loaves of bread it is not possible to leave bread anywhere he can get to it. He will get it and eat it so fast you can’t get it from him. I can leave any other food out and he won’t even mess with it. I can cook and he will investigate but not misbehave. We can eat a meal sitting on the couch and he will not bother but boy don’t leave the bread out… Last night I left the bread out …. Some people(and people meaning me) never learn….

 

The Doobie Brothers/Journey Concert

Last night my sister took me and my daughter(her first real concert) to see the Doobie Brothers and Journey. I will have to say this was one of the best concerts I have attended. In my younger years, I went to so many concerts, rock festivals and all that. Now that I am older I don’t have the opportunity to go as much and finances rarely allow.

My daughter is medically complicated. Last Saturday she went to the emergency room and wound up in the hospital for a week. On Wednesday she asked her doctor will I be home by Friday he said well I would like to keep you on the correct IV meds until Saturday. So I asked him Doc, any chance she can have a few hour furlough on Friday night we have tickets to a rock concert. He said No No No, I will get you out by Noon on Friday so you can go home and do your hair and makeup. It totally made our day.

I was concerned that she would not be feeling up to it. Life has a funny way of turning around. We fight her health issues on a daily basis and just when we think we won’t be able to go somewhere , it turns around and we get to have a great time. I guess with the downs must come the ups and I am truly thankful for that.

The show started with The Doobie Brothers. It was brutally hot out and we were afraid it was going to be horrible but five minutes in came the breeze and from then on out it got better and better. The Amphitheater was packed and the crowd was mixed with young and older crowd so we all fit in. I will admit I thought I knew more songs from the Doobie Brothers than I did but each one sounded amazing even the ones I never heard before.

When Journey took the stage the crowd went insane. The look on my daughters’s face was priceless. She jumped out of her seat right along with all the more seasoned concert goers and the show just got better and better.

The lead singer that has replaced Steve Perry, I forget his name he was amazing. If you shut your eyes you would not have a clue it was not Steve Perry. They all put on a great show, filled with great music and energy.

Pretty amazing to go from eating breakfast in the hospital to rocking out in the Amp!

Kidney Transplant is simply a treatment option

When it comes to talking about my daughter’s health, the words come easily. She is complicated at best and if you read my other posts you can learn a lot about her. She is now 12 years old and just about 7 months post Kidney Transplant. Everyone just assumes that since she got a kidney everything is better. She is no longer in need of dialysis treatments but she is certainly not out of danger. Her health has improved but she is far from healthy.

The first few weeks labs were required twice a week and have now dwindled down to every 2-3 weeks. During one of her very first set of labs we found out that she has a virus called the BK virus. Apparently this particular virus can lay dormant or can creep up and attack the kidney. It has been the most likely cause of a transplant patient losing the kidney. Rejection of course is another huge concern as it can happen at any time. For this virus to become a troublemaker it must be in the blood and urine. For a while it was just in her urine and they went to half dose of one of her anti-rejection medicines. Going down on the medicine allows for her own immune system to pick up and hopefully knock down the virus. This was working for a while. It has now come to our attention that it is back in the blood and urine so they had to stop that anti-rejection medicine all together. She is still on one so hopefully her body won’t start to attack her new(and very loved) kidney.

This past Saturday morning she woke up and said her urine smelled terrible and that it was a bit cloudy. As she has a Urostomy it is very easy for me to monitor color, clarity and volume. I told her to drink more water and see what happens. We were fortunate enough to get tickets to see a Major League baseball game and the seats were what they call Field box as they were right on the field in front of First base. My daughter really wanted to go to the game as we already made plans with my sister and my nephew(from either side of the family) I told her to keep drinking and since it was an inside ballpark being overheated was not an issue, we decided to see how the day went and call the doctor when we got home , if need be. When we got home she said Mom I did not want to complain but I am having some pain and my urine looks a little pink. We decided that we would empty it, change her ostomy bag make sure that there was not a little cut or something that would easily explain this pink color. Everything looked really good so we called the on call doctor. He stated to take extra fluids and re-evaluate in the morning. In the morning there was more blood and it was obvious sometime was not right. I called doctor again and he again told me to keep her hydrated and to call him if a fever developed. I really did not like the answer but I figured she was to see her doctor the two days later.

Without fever and the blood coming and going it did appear it was not an infection. We toughed it out until yesterday when we saw her doctor and she did full lab work and urine tests. She confirmed no infection but of course sent off for cultures which sometimes take days to grow. She is concerned but so far has not told us the next course of action. This morning there was blood again and now she fell asleep complaining of pain. She is not running a fever so I will wait until the morning but tomorrow for sure I will bring her in as they need to do an ultrasound of that kidney. I have tried to learn what could be causing this but truly I need to stop confronting Dr. Google.

A transplant is a great treatment option as quality of life can surely be improved, not being held down to diet and fluid restriction, not being tied down to a machine 3 times a week and all the other things that go along with being on dialysis. But, the truth is a transplant can be just as scary. Each and every day that she thrives is a true blessing and the days that don’t go so well are just reminders of how delicate life can be.