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!

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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.

Those Kinds of Days

I was reading a blog post over at Joy of Mom today and she wrote about a day that she was about to give up. It made me realize I have those kinds of days more than I care to admit. Especially with a toddler and a baby in the house. Don’t get me wrong, I adore and love my kids to the moon and back but some days I want to throw my hands up and yell at the top of my lungs that I quit.

I feel that as a mom I do not write about these days as much as I should. There are days that I am in tears for most of the day. With a 3 month old daughter who has more medical issues at the moment than I can shake a stick at, it is at best difficult and at worst very depressing most days. We have a ton of appointments to get to and every two weeks I have to people stick my daughter multiple times to get an IV in veins that are too tiny and fragile to handle this. All of that so she can get a blood transfusion that keeps her semi-healthy so she can gain weight like she is supposed to. On those days I know I am doing what needs to be done for her good, but as I listen to her screams and see her tears I feel like the worst mother of all.

Then there is Jeff, my perfectly healthy, active. crazy little boy. I know he gets bored being at home with us and not some place where he can run and let the energy out. Honestly, most days I do not have 1/100 of the energy that he has. I feel like I am not doing enough for him or with him. His tantrums are sometimes well deserved in my eyes. Sometimes not. I get tired of the hitting and head butting, which I thought we had left in the past, but it is coming back as is the biting sometimes. I know his life changed so much the day his sister was born and the fact she is not totally healthy means he gets less attention than I want to give him.

Most days something has to give and honestly it is me. I have damaged my shoulder some how and I was supposed to go to the hospital last weekend, but I had a horrible two day migraine. When I have those kinds of days I can barely move, but because I am a mom I keep going through the pain, misery, nausea, and everything else that comes with those kinds of headaches.  I have no idea how I get through those days at all. I know I am not giving my best, but honestly, I am amazed those days I even make it through.

I am not saying that M does not help because he does. A lot. Eventually he will have to return to work and I will be on my own with the kids all day long. Right now, my daughter mostly wants to be held all day, which with my shoulder is a challenge. My son wants to play and when I have my arms full of Charlie it is hard to play with him. We do play ball but his attention span is short as it is with all 2 year olds. I feel like I am letting them both down which leads to me feeling like crap and wanting to curl up.

I am barely running on little sleep, guilt, and caffeine. I know this will get better eventually, but right now eventually does not seem all that soon or close. Ugh. Well, off to play ball and stop the melt down that is brewing.

-Ciao!

Another Update

I know I am terrible lately at keeping everyone updated and I apologize for that. Life has been crazy and busy! So last Monday M and I talked about applying for Food stamps again. If you are a long time reader of this blog you know the issues we have had in the past with this. He agreed and I went and applied online. Within 10 minutes the guy called for the interview. By the end of that phone call we  had food stamps for Feb ( what is left of it anyway) and March. Which is helpful. I have to do a second interview and get the paperwork done then we will get food stamps for the rest of the year possibly. Keep your fingers crossed for us!

Charlotte has back to back doctor appointments tomorrow with the NICU grad clinic and the hematologist.  I am thinking she will need another transfusion tomorrow or sometime this week. WIC appointment is on Tuesday for us as well, so this will be a busy week!

M went back to Drill in Feb for the first time since surgery. He did well. So did we because it was our (the kids and I) first time all of us home all day with out him. His next Drill is beginning of March. He is doing so well with physical therapy.

Well, I am going to run, I am tired and I need a nap.

-Ciao!

Ahh Quiet

Finding a few quiet minutes to myself is really few and far between these days so when I do actually have a few minutes with quiet, I tend to savor them. One of the things that M got me for our Christmas was a wireless mouse and keyboard and honestly I just totally love them! One of the reasons he got me these is that I have a bad habit of sitting with the lap top on my legs and as a result of that, I have a pretty bad scar on my leg from the hot fan.

He thought if I had a wireless keyboard, I could sit with the key board on my lap like I am doing now and  type without the nasty burns. I have to admit that I like this much better! When I get a few minutes when I can actually hear myself think (pretty hard lately with all the migraines I have been dealing with. I have a neurologist appointment in May). So while I am savoring the quiet, writing this entry, and eating an orange Hostess cupcake ( I do not like the chocolate ones, I know I should be shot! I can only eat them rarely because I do not like the cream inside) I do like the orange ones, they are not too bad with the cream inside. Although I do eat around it and then try to give it to M. LOL.

M went to physical therapy and took Jeff with him. Charlie is napping because she had a rough night and by proxy so did we. I had a rough night because I had an episode with not being able to regulate my body temperature. I was freezing last night, the heat was on and set at 75, I had on clothes, and was under a blanket, but I was shaking uncontrollably and my teeth were chattering. This has happened before and I am not sure why it keeps happening. I was hoping it was just because I was pregnant but I think it is more than that. So, now I have to make a doctor appointment for me soon and get this looked at. Sigh. I spend more time with doctors than with anyone else.

This month on the 25th there are actually 3 doctor appointments in one day. Two are for Charlie and one is for Jeff. So that day is about to be so very busy and then in Feb. is the heart doctor appointment. And on and on. Since it is still quiet, I think I am going to go lay down until it is not quiet anymore.

-Ciao!