Happy New Sickness, I Mean Year

If things were not bad enough, this past Friday BOTH kids tested positive for the flu. Not only that but Jeff had been vomiting in the middle of the night when we started to give him some melatonin per his pediatrician. Mainly to help us get him on a schedule for school, which is all out the window now because I have to cancel every.single.appointment we all had this week so that I do not spread our flu germs to other people. I know, you are welcome. Jeff was due to start school on the 10th, which is now out the window. We had appointments every single day this week and now tomorrow I have to take time and call and reschedule everything. Char has had to go every single day and have blood drawn because of the fact she keeps running fevers. On Friday at the doctor’s she was 103. So, we had to drop Jeff and I at home, get Char comfortable, grab some things to keep her occupied and make her feel okay, then Mike had to take her to the ER. Someplace in there we are dinner. We were lucky that all the tests came back at or above her baselines, so she got to come home. 

She has nasty bruises on her arms from getting blood drawn so much, so tomorrow morning I have to call the pediatrician and see if they can get her in, also beg them for no more blood until her poor arms heal because right now they are just hurting her over and over. Sigh. Both Mike and I are exhausted and sick too. I have to reschedule the sleep study. Ugh. I am so over this because I am tired and sick and all I wanna do is sleep. So, Mike and his mom are taking Char to see the hospital administrator so they can see what kind of shape her arms are in because the nurses do not want to listen to us when we tell them about her veins. She has small veins, to begin with, they are fragile, they roll, and they blow out so easily. It has been like this since she was born. We tell them, but then no one listens. 

Jeff seems to be okay, he is the only one of us with any kind of energy. Hopefully, in a week or two we will be back to normal health-wise and be able to resume all activities. I am so tired so I leave you now. 

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Christmas Was Christmasy

I have always felt kind of left out on Christmas. I am adopted as most of you well know and I always struggled with the holidays. I always felt like a third wheel on a date. I know that my family never intended it that way and they never actively made me feel that way, but I always did. My cousin and her mom got along really well. When I was a kid, me and my mom, not so much. I am not airing family laundry here, everyone knows that my mom and I were better off far apart. Back to what I was saying, I always felt, I am not exactly sure how to put it in words, but the closest I can is left out. Everyone had family that they belonged to and I never really felt like I belonged to mine. Ever. I tried talking about this with the numerous counselors I went to as a kid, but no one ever helped me deal with that feeling. So, carrying this feeling into adulthood, made me kind of meh over the holidays. When my two older kids were little, I tried so hard. I would put up a tree and we would decorate. Put lights up around the house. Mostly because I wanted everything to be somewhat normal for them. I never really saw the point of it, but when I saw their smiling faces looking at the tree and all the lights, I went with it. 

My kids now are young and they have no idea yet what Christmas is. This was the first year we had a tree. We are staying at the in-laws’ house so they put a tree up and lights and I saw those smiles and wonderment in the eyes again, so I know this was basically the last year that we can not do anything. So, here is to hope that this next year is a lot better than this one because honestly, I am not sure how much more we can take as a family. 

This year Christmas was good for the kids, mostly because of my mom and the other family we have. I was so appreciative because the last few years have been horribly lean at Christmas. This year Charlotte got overwhelmed at how many gifts she had to open this year. It was a sight to behold. Jeff loved ripping the paper off and shredding the bows like any little boy would. We had a good time Christmas morning. It made my heart lighter like it used to with the older kids. Hope your Christmas was good. I need to go take some meds and lay down!

Vindication Tastes Sweet

So, most of you know that I have been battling to get my son diagnosed properly. We had a blow to that process earlier this year, but that was trumped yesterday. I will take you behavioral psychologist and raise you a pediatric neurologist! I win! I know it seems petty, but when two (2) pediatricians with their own Autistic kids have BOTH said my son is Autistic and then this woman undoes all that with one report, it really irritated me. Especially when she notes some of his autistic behavior in said report, but no it is not Autism. It is Apraxia, something that honestly no one I have spoken to even knew about! 

Well, all this changed yesterday with our trip to San Francisco. We went to see a pediatric neurologist for Jeff because of the diagnosis of Apraxia. Which he does not have. He is Autistic and meets the requirements for being diagnosed as such. So, today with a letter from this neurologist in hand, I called the school district to get the process started. He has an appointment at 3pm there to be evaluated. 

Also, had to reschedule a WIC appointment because we were all so very ill and missed it. Which is that day but earlier. Charlotte starts her speech therapy on Monday and the Infant specialist is coming on Tuesday. Also, got her 2 years well check scheduled. Made a few other calls to get some information on help for a few things we need. Mike did well at his post office interview in West Sacremento today and now we are waiting on an email for him to get drug tested and his background check. We have to get Jeff some blood work done, some of it is genetic testing that is in depth so it will not be back for a couple of months. We are moving forward with all this stuff. Somedays I feel like I am standing in place though. I am so very tired and bone weary of most stuff going on. 

I missed counseling for 2 weeks because we were really sick and go back on Monday afternoon. I am so looking forward to that! I need to get back on schedule for my meds too because of nausea I had stopped taking them, so now it is time to start again. Right now life is busy and overwhelming. I need to run.. 

-Ciao!

Sick

We are all sick (except M, he has an amazing immune system). He took Charlotte to the ER last night about 11:30 pm and they admitted her to the Children’s Hospital after doing 2 breathing treatments and she was not better. She had 2 before that at home, so the total was up to 4. They put her on oxygen. I stayed home with our son because well, we are sick too and honestly I did not want to spread this any more than we had to. This morning I made calls to our appointments on Tuesday and Wednesday to cancel. M just called a bit ago and once the attending doctor comes in and looks at Charlotte they will possibly take her off the oxygen and then the timer is on, with watching her be sure her oxygen levels are stable. They want to watch her for 12-24 hours then they will release her. Hopefully, by tomorrow or Wednesday, she will be home. This has been super hard on us of course. Jeff is not taking this lightly. He was recently diagnosed as mild/moderate autistic. So, I am working on some things for him. Not a great time to be sick! Gotta run! 

-Ciao!

Rough Ride

Life here has been really busy as of late. A lot of doctor appointments for Charlotte as later this month she will be turning a year old! Coming in the next week or two we have a major hearing test, an ear doctor appointment, physical therapy sessions, and then there are other doctor appointments in the beginning of next month because her birthday falls on Black Friday this year! 

Getting to this point has been a very long road. I honestly was not sure if we would ever get here. With so many different health concerns and doctors, I am very proud of where we are these days. She is finally making her own red blood cells, which means that the blood doctor appointments are being pushed out two months and not every month like we had been doing. Her heart doctor did not want to see her back for a year. If we can pass this hearing test coming up, hopefully, that doctor will not want to see her for a good while too! 

It has been a rough ride for us here. Jeff has no idea what has been going on just that something has been going on. It is difficult to explain all this to a two-year-old. He is still not really communicative, although he has started to say ‘Da’ and ‘Ma’. Which is great progress! I am hoping to get him in for an evaluation sometime this month  too. He will go to where Charlotte gets her physical therapy done. People ask me why he is not in daycare or in a tots program, well because he does not talk mainly. I think it would be beyond frustrating for those people and for him as well if no one knew what he needed. I just do not want to put him or them through that. 

Charlotte has come so far in a few months! She is doing so many things that she could not do before physical therapy. Now we have an appointment for First Steps to come in and give her some therapy here as well as going to physical therapy. Which I am sure can do nothing but help her! I am hoping to see her crawling soon. She has not mastered that quite yet and I can’t wait to see it happen. She is getting so big! We are giving her table food nowadays because she refuses to eat baby food and she is doing really well with that. She has three teeth in already and I am sure there are more trying to pop in soon! I am just in awe of my little girl. She has been through so much in her short little life and she is still her smiley self every day! I can learn a lot from her for sure. 

My business is doing well. It has been a struggle to get it started for sure. I had a goal of making $99 in October since I got a late start and I met that goal! So, for November I have a goal of $250 and I am working it! I love selling Origami Owl.I Have a facebook party already booked for this month and I am looking for more! So, if you know someone who wants to host send her my way! Oh and if you book with me before Nov. 18th I am throwing in a special free gift just for you! You can find more information here https://tawnyagardner.origamiowl.com 

Crazy House and Crazy Life

So lately we have had a flurry of doctor appointments for the baby because it is coming (way, way too fast I might add) up to her first birthday! Charlotte’s first birthday this year is on Black Friday ( yes, I think it is some kind of cosmic joke that this has happened to me). I look at her and see how far we have come in this almost year, but it has passed so quickly I often wonder where it went! I know that most parents will say that, but for us, it is especially true because we have literally spent more time with her doctors, specialists, and other medical professionals than we have with her at home. For quite a while we were at a doctor office every two weeks or so. It was exhausting and scary. I am not sure I can even put what it feels like into words so that others can really understand it. 

In this almost first year of life for Charlotte, I have had more people look at me like I have not fed my child than I would ever wish on anyone enemy or friend. The feeling when people in a position to make that kind of call and ruin your life when you are doing the best you can for your child is to be trite, scary. It gets so that going to the doctor made me cringe because I knew inevitably we would get around to her weight or lack of it. When they weighed her, I would see the recrimination in the eyes of the nurses, until I started going through all the health issues we had discovered. Then the recrimination quickly turned to pity. I never wanted pity. I never wanted any of this. All I wanted was a healthy child, which I had no control over. So, I had to learn to deal with all the scary stuff. The every two weeks of blood doctor appointments where they would stick my daughter multiple times because they would not listen to me when I told them that she had fragile veins and that they would blow out easily. At one point, trying to get a port for a blood transfusion in, it was 7 sticks in her body. All the while she was screaming. I wanted to snatch her up and leave, but I knew I could not, so I had to sit there and deal with it. 

Our life has been so very difficult and crazy (there is no other word to describe what we have been through as a family) When Charlotte was just a month old, she had her first two blood transfusions. She and I were in the PICU for four days so she could be treated for her blood disorder ( in basic terms her body was not making enough red blood cells to keep up with the ones that her body was destroying, which is why she had blood transfusions). Her core body temperature was also 95 degrees, which caused some concern as well. So, for four days I did not sleep much and she was tested, prodded, and looked at. All. the. time. The nurses and doctors were amazing. She had an echocardiogram done on her heart in which they found that her aortic valve was abnormal. The eventual diagnosis is that she has a bicuspid aortic valve, which means she will have to be watched her whole life. She will also have to be monitored her whole life because of the blood disorder as well. 

She is amazing. She is a fighter. She is my hero. My 10-month-old daughter has had 8 blood transfusions so far and she may need more in the future. Right now she is holding steady. She has begun to make her own red blood cells finally and that is a miracle for me. 

See, we also have a 2-year-old son, Jeff, who has never been sick outside of a two-day fever when he was teething. So the stark contrast between brother and sister is sometimes overwhelming for me. I know that this almost year has forced him in many ways to grow up more than any 2-year-old should have to. He does not understand that his sister is very sick or was. All he saw was she was getting all this attention. He now has a speech delay that we are currently trying to work through. I am going to get him evaluated in November. 

To say that M and I are exhausted is putting it mildly. Charlotte finally started sleeping through the night about 9-months-old, but it is not always the case. I have a wonderful husband who gets up with her when she wakes in the middle of the night. So, I can get sleep because I am a stay -at-home mom. I lucked out in so many ways with M. He is amazing and my rock. Our anniversary is coming up this month, we will have been married for 1 year. It is a hell of a first year of marriage let me tell you! 

We struggle so much every day. With normal stuff. Just getting food into the house mostly. See, we have tried to apply for help but apparently, we make too much money where we live now. We barely make it every month. Sometimes, we don’t and something has to give so we lose phone/the internet or electricity. It is hard. M’s family is amazing and they help us as much as humanly possible but they have trouble too. I am not saying this to gain pity or so people will feel bad for us, that is just how it is. I made myself a promise that when I started this blog that I would be honest and show good and bad here. 

Charlotte is doing amazing these days and we have come far! She is now a whopping 17 pounds and 25 and 3/4 inches long. She has recently moved up to her big girl car seat. She is going to physical therapy and learning to crawl. We are not there quite yet, but very soon!! I am so proud of her and us as a family. We have not given up. We keep moving forward no matter how hard things get. The picture below is where we came from. 

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This is Charlotte under the lights after birth in the NICU

The picture below is where we are now.

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This is Charlotte stretching in her bouncy seat. 

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This cute boy is Jeff.

I love my family with all my heart. We have been through some rough times, but we are getting through them. If you have prayed for us or thought good thoughts for us, thank you. We appreciate it. We will definitely need more in the future. Well, it is lunch time and my boy is asking to be fed! Gotta run!

 

-Ciao~

Why I Want My Kids to See Me Peeling Potatoes

Let me begin by saying that I am an old school mom. I have 2 adult kids already, so they grew up with out cell phones, computers (excessive use) and all the technology of today. I am planning on raising my kids to play outside, do simple math without a calculator (or calculator app) and I always encourage them to be kids. This time of their lives does not last that long and I want them to enjoy it.

That being said, this is why I want my kids to see me peel potatoes, cut up veggies, and do prep work for dinner. I also want them to see me cook dinner as well. Mainly because I do not want them to think that the ‘dinner fairy’ is real, as much as I wish she were. I want my kids to know that there is work in everything you do. Making dinner for them is no exception.

I want my daughter to know that it is okay to be a mom and a homemaker even in this age of women getting to train for combat infantry jobs, running for President, being astronauts, and even being teachers. I want her to know there is absolutely no shame is taking care of her family as I am taking care of mine. I want her to see me gladly putting in so much love to feeding, caring, and even disciplining her and her brother. I also want her to understand that when she is old enough she will be in the kitchen with me learning all things I was never taught and had to learn on my own.

I want my son to know that cooking and making dinner can be fun and is not a chore. I want him to understand that my love for him and sister extends to the meals I make for them and that cooking is cool. So, when he is old enough ( I have actually started with him helping me with some recipes) that cooking is not just for girls. I also want him to understand that I want him to learn these skills so when he is on his own he will never starve.

For me, cooking and prepping is an act of love and I want my kids to see and understand that. I want them to experience that love for themselves and know with every single meal I sit on the table, from the most simplest to the most complicated that they all came from my heart and that they are filled with love and caring. I want to send both of my kids out into the world with skills to take good care of themselves and eventually their families.

In this day and age, it is so easy to push a button on a computer and order dinner, I have done it many times myself, but I want my kids to know how to cook and bake so that they have a choice in life and not just have to eat junky fast food. Oh, do not get me wrong, I love, absolutely adore junky fast food, but I love to make good, home cooked meals for my family too.