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!

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~

Enter No Pain Relief…

Most of the people I have known for longer than 5 minutes know that I have suffered from horrible, painful, sometimes debilitating migraines. For those of you who do not suffer from these horrible things, I would not wish them on you ever. I finally got M to quit saying he has a migraine when all he has is a headache. He never understood the difference, he thought, like many do that migraines are just bad headaches. They are not. Migraine is a neurological disease. I am new to this concept myself.

I switched meds recently after a phone call from my neurologist on last Tuesday. He called on a day where I had a level 10 migraine. I could not focus on our conversation. I forgot what I had already said to him and repeated myself several times in the span of a five minute conversation. So, much so he wants me to get an MRI done to find out why my migraines have changed so drastically after the birth of my daughter, Charlotte.

Some days my pain is manageable. Of course my manageable and yours might be slightly different. I am able to function with pain up to a level of about 8.5 or so. Now, that does not mean I am doing things well. I am not, I am just barely able to get things done. When I am at this level of pain, my brain is in a severe fog and I will forget what I am supposed to do or even what I have done already. Even if it has been only about five minutes. For me, the brain fog is the worst thing ever because I pride myself on my memory and the ability to know what I need to get done. Some days, honestly, I can not remember my own address or phone number.

Some of my other symptoms of my migraines are: sensitivity to light, sounds, smells, and even it can hurt to touch me. Lately, I have been dropping things more than usual as well. Which kind of is a bad thing when you have an infant who can not get from one place to another without me picking her up and moving her. Those times, I take it nice and easy making sure I have her wrapped in my arms and not in my hands. I also have been more clumsy than usual , tripping over my own two feet more than normal, tripping over small things that normally would not bother me, and tripping over nothing essentially.

There are days that I make it through the day okay and I seem okay and then there are those days that I made it through the day and wonder how on Earth I made it through. We are supposed to go grocery shopping this evening, doing that for me depends on where my pain level is at that point. It is not unusual for me to not go at the last minute because my head hurts so bad I can not take it. Sometimes, I force myself to go anyway and those days are horrible.

I feel bad for my kids because most days I am not the fun mom. My kids are too young to understand what is going on with me. My two year old does know that sometimes mommy is in pain and he will rub my head to make me feel better, which makes my heart melt and breaks it all at the same time. Today I have to wash the comforters on the bed. It has been a while since I have done that. The problem is that the wash cycle is forty-five minutes long and I will forget what I was doing and it will sit and get all icky smelling.. so I have to try and focus on that. It is hard to do when you have two small kids needing stuff all the time..

Laundry is calling.

-Ciao!

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!

A Crazy Week!

I know I have not been here much lately, I will tell you why. Charlotte was in the hospital. She was admitted on Monday and we got home Thursday night. She has the blood disorder I have and her red cell count dropped to 6. It is supposed to be 10 or more. She lost a lot of weight and the doctor was really worried about it. She was sent to the hospital immediately.

While in the hospital she received two blood transfusions and that helped a great deal. She is still on high calorie formula so she can rapidly gain weight because she is underweight right now. I was so worried I could not think straight. I had my lap top but I had to process what exactly was happening with us. She now has hematology appointments and on the 3rd she has her hearing appointment as well. Monday she goes to the pediatrician. So, this is about to get so busy. We are hoping to keep her red cell count  up, by herself. However, if she can not then she will need more blood transfusions. The hematologist will not even think about removing her spleen until she is at least three years old.

She still has her heart murmur and that appointment is in March. We will be at the hematologist every week for a while so they can monitor her. When we left the hospital her red cell count was 10.5, which is where it should be. We will test her on Wednesday to see how far if any it has fallen so we can see the rate that the red cells are being destroyed.

I am exhausted and still worried, but she has some really great medical professionals in her corner. I will try and get here to update on Wednesday after all the appointments have been done.

I need to run, it is time for her to eat!

-Ciao!

Hospital Story

So, I guess it is time to explain what exactly happened to me and why I ended up being admitted to the hospital this past Monday. My inlaws were here for about 2 weeks and when they left, my father in law was starting to catch something. I knew it was just a matter of time before I got what ever that was. And it was exactly a week. So, last Friday I had a sore throat and sneezing, it got progressively worst through the weekend, but I had a doctor appointment on Monday so I was holding out until then. By then I was having some trouble with my asthma. I went to the doctor appointment and was sent to the pregnancy triage area of the hospital. By then, I was having issues breathing and you could hear me wheezing badly. 

They admitted me Monday. Gave me a high dose of steroids in my IV and I was getting breathing treatments every 4 hours. One of the issues I encountered was that the steroids jacked up my slightly high blood sugars into the 200 point range, so they had to give me some insulin to bring it back down. The baby was being monitored the whole time and my oxygen levels were also being monitored very closely. I am happy to say we are home and I got new inhalers, but the issue is that they are the lowest dose and will take 1-2 weeks to work as needed. Ugh. I have 2 versions of the common cold and thankfully not the flu. Yeah, apparently there is a nasal swab test for the flu and if you can avoid it I really recommend it. It is painful. 

I have a doctor appointment for follow up on Tuesday. I am trying to take everyday as it comes. I was released late Tuesday night after the results of some tests came back. I am really hoping that I am healthy by the time I have the baby because labor is hard enough when you can breathe normally let alone when you feel like you have an elephant sitting on your chest all the time. I am trying to give the new inhaler time to actually start working but if I have trouble I will be going back to the hospital for more breathing treatments. I am also going to speak with the doctor about getting a nebulizer for the house just in case.

I also canceled my hematology appointment for Monday, mainly because it is at the cancer center and even with a mask, I would still have germs on my clothes and such and I am not comfortable going into the place where people are fighting for their lives this ill. I will reschedule when I am healthy again. Hopefully, I can stay out of the hospital for now, but we will see. 

-Ciao!