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!

Advertisements

It Has Been Hard

Lately, we have been under a lot of stress and so much going on at one time. I am honestly tired and ready to just throw in the towel. Since I have never been one to give up easily that is a foreign concept to me. Although, I am angry for a couple of reasons. The first one being that we have been looking for a place to live once our lease is up here. We *thought* we had the perfect place picked out. Even had an appointment to go and look at an apartment in this place last Tuesday. Get there and the office is closed for a medical emergency. Now I am not heartless, I understand emergencies quite well because we had another appointment the week before set and Charlotte had to go to the doctor that day because of a fever and throwing up (more on that later in the entry). The difference between the lady that runs this office and us is that we emailed her (she rarely answers the phone when you call in the first place) to tell her that we would not be there and why. When she had her issue, no email no phone call, just sorry about your luck. We called her on Thursday to see if we could go up that day or Friday to look at the apartment she had and all of a sudden she has nothing available and will have something again in mid-March. We had been talking to this lady since the end of January. She knew our time frame. We both were so annoyed and angry that she just strung us along all this time when we could have been looking at other places. Mind you it is hard to find affordable living here because of the horse money. 

Yesterday we looked at two different places and filled out the applications for both.  The one place I liked a lot and the second one is small. Like not sure my king sized bed will fit in the master bedroom small. Now it is a waiting game to see which application comes back first. The place I liked is here and it looks amazing. I think it is mostly a place for college kids but it is under new management that is not our current management company here where we are now. I think they are trying to get more families in there to offset the issues that were there before the new management. The second place is here and we are looking at the 2 bedroom formal here. 

Back to why Charlotte had to go to the doctor, she was wheezing pretty badly so they gave her a nebulizer and she is on Albuterol as needed for wheezing. I have asthma and I am worried that this is the beginning of that with Charlotte. Also, the older kids both have asthma and Katie had it this young too. So you can see why I am concerned. I am glad they gave her a nebulizer. The bill came in the mail yesterday so I have to call them Monday to give the insurance information. She hates the breathing treatments but who doesn’t? She is fine until the meds start coming into the mask and then she starts crying. Although she will hold the mask over her face and cry. LOL. 

I have done mountains and mountains of laundry lately. I have 4 bags of stuff to donate to the Salvation Army as well as some bigger items. Charlotte is doing amazing with physical therapy and is walking some. We are working with her to catch up to her age group and I am happy to report that she is almost there!! Jeff is going to speech therapy and occupational therapy has been suggested, so after we get moved I will get an OT eval done for him too. His speech therapist did say that she did notice some of the things I am concerned about, but since insurance is paying for services without an issue right now, a diagnosis is not a concern. Although a lot of doctors want to wait until at least four to evaluate and I am comfortable with that for the moment because he is getting help now. We could possibly be adding an orthopedist to Charlotte’s medical team. She is having issues with one foot while walking, so we are getting her some shoes first to see if that helps with the issue or if she might need a brace for her leg. Ugh. Life sure is complicated sometimes! 

I have more laundry to fold and sort, so I am going to go! Hope you have a wonderful day! I am hoping that when I post again I will be doing so from our new home!! 

-Ciao!

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. 

12301469_970578973008062_393804885316079899_n

This is Charlotte under the lights after birth in the NICU

The picture below is where we are now.

charlotte-stretching

This is Charlotte stretching in her bouncy seat. 

DSCN0037_thumb.jpg

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.

Tummy Troubles

It has been a while since I have been here and honestly we have been uber busy with doctor appointments. Charlotte is having surgery on May 25th to get tubes in her ears to help drain the fluid on the left side. She has failed every single hearing test she has had on the left side since birth. Tubes to me are not a big deal, but the putting her to sleep part is, she is so little. Not sure how the anesthesia will affect her. Also, once they get the tubes in they will give her a final hearing test, if she fails that one, it is likely she has nerve hearing loss from the jaundice she had at birth. The doctor told me that kids with severe jaundice have much more likely chance to have nerve hearing loss. If that is the case, then we will have to discuss hearing aids for her.

The reason for the hearing aids at such a young age is because she is developing speech patterns now, so if she is deaf in one ear when she starts talking her speech patterns will not be correct and then we will have to go to a speech therapist. So, hopefully all this works out for the best and tubes work right away.

We had to change her formula again. She is having serious gas issues and still spitting up at 4 months old. If this formula does not work there is one more we can try. I am hoping that this works but so far she is still spitting  up after almost a whole week on the new formula. We might have to go see a pediatric gastroenterologist. We are ruling things out one at a time, which is good, but frustrating!

Jeff turned two last month and he is amazing as ever, although some days extremely frustrating! He is definitely a two year old! We have good days and bad days with that and it sometimes seems like more bad than good lately. Hopefully, it will calm down soon.

M was released from physical therapy. He is happy but was frustrated too. He only had four months of physical therapy after surgery. Monday we are going to run some errands, one of is to get the documentation that he can return to work. We also have to take some of the unopened formula (the soy) to WIC to trade for the new formula. Also we have to go to the armory to get paperwork for the basic housing allowance for when M is gone to AT (annual training) for two weeks in August and then for three weeks in November he will be gone for three weeks for something else. Ugh. Not happy about that, but not like I can make them change it either.

So, keep your fingers crossed that the new formula works and everything is fine with Charlotte! I need to go do battle with the 2 year old, which me luck!

-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!