Tuesday, June 22, 2010

GETTING WELL

So we are going in our 2nd week of RSV. She is no longer contagious according to the Dr, but this cough still exists. We are back to sleeping in the crib as I had her sleeping next to me for the worst part. I hate doing this like that. First off that is a NASTY habit to break having a little one sleep in your bed. Second, the number one killer of babies is suffocation due to idiotic parents. How or why would you EVER risk that with a tiny infant! Since she's a toddler now and kicks me out of the way it wads little more comforting to have her by me. Me being the paranoid parent I put pillows in between us. Now as a toddler I have to be more concerned about the TV as that's a huge toddler killer... in terms if they pull those flat screens down on top of them. wall mount here we come.

So she has a mild cough and is a picky eater these days. She is now standing and scooting across the couch with support. she wants to climb in and on top of everything so I am going to have to be picky when deciding on upstairs furniture.

We go back to the GI Dr next week. I have yet to get her blood work done. she needed a break. at least sometime away from being sick or tortured. What is the point this illness is not treatable... so if she has it not as if she needs medicine asap. So I thought we'd wait until at least she feels better. we go to a dietician to discuss her diet. I wanted to smack the last dietician I met. I am not a violent person but dealing with the medical industry... for how educated thhese people are... they are idiots!

I have little patience for stupidity or lack of common sense. My biggest complaint is people that are suppose to be smart or act highly educated but really have no clue. I am no genius but I do not pretend to be one, but please don't let me be more educated than you in your own particular field.

I am looking for B12 food supplements and healthy ways to increase calories not just to make her gain weight at an unhealthy rate. I know Kale is one of those superfoods. In terms of more nutritional value than let's say celery, plus has high amounts of calcium... now only getting a one year old to eat Kale is the challenge. It will be interesting meeting with this food person... I hope I ate least learn something.

I'm not a heavy person because I eat right. it takes a lot of work to eat right. I spend 2 hours at the grocery store each week if not longer and an hour in preparation. I shop at wild oats now whole foods (which if anyone is looking to buy me a birthday present that's my number one store). I read everything. If I do not know what it is it dies not go into my body nor hers. Now this is hard for many to understand let alone that I am a working ONLY parent. I say ONLY not single as there is no dad weekend visits, it is ONLY me... the idea is that this will teach her to be a healthy adult, to make good decisions, to be aware of her surroundings/food/body and keep her from getting sicker.

Monday, June 14, 2010

RSV

This IgA disease wasn't even the reason for our visit to the PEDs Dr today... but we learned something hopefully useful. So Madison still has a fever. It seems this bug is getting worse. Of course it is...

She caught the virus RSV. NO idea, but I have a good knowledge from where. She'll have it for 14 days and be contagious for 7 days. She will get worse before she gets better. Although, I'm not sure how much worse you can be at 104.5 degrees before you are on fire.

This so called "cold" develops into an infection of the lungs causing bronchial problems which can lead to other illnesses and problems. Oh how I pray this does NOT happen! Especially lying here next to her listening to her struggle to breathe... this sucks!!!

Forget that... I should not have been a Dr I should have married one, or at least find a live in one as we are there weekly! Ha!

Poor baby sounds horrible! With her coughing she just woke herself up :( What do I do?

SELECTIVE IMMUNOGOBULIN A DEFICIENCY

So on our weekly illness... the scary part is they keep getting worse and worse... We visited the PEDs Dr. when I first went there I expressed my concerns... I was concerned that the NICU visit with the digestion of her bowel movement caused an infection... that this damaged her immune system and/or intestines. Therefore, I wouldn't feed her wheat because I have no idea what that did to her body... besides processed food is garbage anyhow.

EVERYONE including the Dr thought I was NUTS one of those google crazies who use WebMD as their home page. it's this... no it's that... He said..."You should have been a Dr... you are really smart..."

He came across a disease called IgA or Selective immunoglobulin A deficiency, which is a mild genetic immunodeficiency where you lack immunogobulin A. this is a type of antibody that protects against infection mainly in respiratory and disgestive systems.

There is no treatment for this disorder which has an association with autoimmune disease and this deficiency can compliment diagnoisis of celiacs disease.

I really hope she doesn't have this! We go for more blood work. He was of course curious. I didn't feed her wheat... I chose to delay her shots as I was trying to keep her as healthy as possible as if she would catch every virus they injected her with... which I stated to him... I didn't get her shots, and thank goodness if she does have this things could have been so bad.

He said you did everything right if she does have this. My thoughts were except daycare...

SMARTS

I generally don't get credit for how smart I am... The Dr said "You should have been a Dr or a lawyer... You're really smart." smarter than you know... Okay flattery will only get you so far...

I didn't give Madison wheat or gluten the first 12 months of her life as I believe it to be evil or processed crap! Did you know, they started enriching food because they destroy all nutrional value so the rats wouldn't eat it off the shelves, but had to put it back somehow... I love how it says enriched... enriched with WHAT?

SIMILAR FEATURES

She looks like my sister so much! :)

SLEEPING BABY

STILL SICK WITH A NEW BUG...

Friday Madison had a fever of 104.5 degrees F. I was freaking out. flashbacks of the hospital made me want to vomit!

She felt slightly warm so I checked and she was 100.9 and it shot up to 102.7. I gave her Tylenol and checked her again 3 hours later after her nap and she was 104.5. I called the Dr. he said I could alternate Advil and Tylenol every three hours. she wasn't throwing up so I was trying to avoid the hospital. I of course didn't sleep and she laid on my chest all night as I held her. every three hours I woke her to give her something. her fever never dropped below 100.9 degrees F. Saturday she wouldn't sleep didn't want to eat but thank good she was drinking.

When we were in the hospital I made sure she understood what an IV was and what caused it. Therefore, when I handed her a drink and she shook her head I said "Owwie! IV!" and tapped the mark on her had and foot saying, "if you don't drink." She drank! that's horrible to scare your child into doing something but the end results would have been the hospital.

Sunday her fever broke and she napped a short while but was a bit clingy. The sitter said her son is sick... what can I do I cannot keep missing work when her kids are sick and Madison. I found a sitter to come to my house for the day. I am extremely nervouse about this but the poor thing was up three times last night and had a runny nose when she woke. she sounded awful.

I made another Dr appointment. I swear if they tell me this is a VIRUS I may flick him in the forehead or kick him!

Supposively this is not normal as children do get sick, but 3 trips to the hospital in 1 month and the last one was 8 days is not normal. I'm questioning if allergies could do this. I wonder if she's that allergic to dogs. I have my suspicions but this is ridiculous!

Wednesday, June 9, 2010

FOOD ALLERGY

My frustration lies within my genes! the problem is that as I reduce the amount of breastfeeding or pumping so less milk is produced my food allergy to milk returns. I was actually told this might happen, but I was hoping they were wrong. the idea is while your producing milk you won't be allergic and because my allergy effects the breathing I was advices to be very careful in this process.

I have deloped a huge liking for CHEESE and chocolate and ice cream, so I am extremely frustrated. at least I have taken on bread. bet you didn't know milk was in bread... among sone pretty nasty items especially if you by the super processed brands.

I suppose breathing is a huge necessity in life... that might ruin my day. So it wouldn't be bad if I had stomach pains or could take some pill after the fact, but this allergy constricts my breathing so there are no tastes half a piece or Ill deal with it later, it's very real.

I suppose it will be back to the vegan lifestyle I once loved. There goes the pants size.

UNDER WEIGHT

Madison had a bowel movement this morning that was so bad it flowed out onto my floor. Poor thing was uncomfortable. She appears to be getting her molars so hopefully that doesn't bring down her immune system to the point if her catching more viruses they cannot explain.

The sitter's little one is sick running a fever of 102 degrees. Thank goodness she notified ne before I bring her over. I figure if he had a fever today he was probably contagious yesterday and she was there yesterday, but I don't want to take any chances as she cannot afford to get sick again. when we went to the store. The checkout clerk remembers us everytim as she was pregnant at the same time I was. Her son is 16 months and weighs 11lbs more than Madison does. Madison is 15 months. I cannot believe what a difference. This girl is skinnier than I am so obviously she's small which makes me see how small Madison is. SO much for MOM ARMS.... I was really looking forward to the buff arms but with such a small baby that's nor happening.

GI FOLLOW UP

I love this GI Dr. he called me tonight to confirm and follow up with us from our appointment.

Madison is not allergic to wheat or gluten according to these tests, which he said because she's so young and small they could be a false negative. he has seen this allergy side effects show up as obesity and under weight as well as mal absorption problems. the idea is that they are going to send us to a dietican and track her calories vitamins and go from there. if she's getting enough calories there's something wrong if not we need to change her diet.

You say the words Vegetarian and immediately people flag you as unhealthy and or stupid. it's frustrating when her blood work had no reference to any low levels of protein the thing that was a concern was calcium not protein or iron. Her iron was low at one point but I blame that on the hospital. the food there had NO nutritional value plus if you don't eat for two weeks things will be slightly off.

Thing that bothers me is whether or not she eats an abundance of calories may be a factor in her weight but that still does not explain the holes in her heart or the fact that it's surrounded by fluid.

GI DR VISIT

We have a new Dr office which means new front desk and more paperwork. I have come to the conclusion all childrens medical personnel are RUDE especially those that work at the front desk. Madison has gained half a lb in 2 weeks so about 8oz. I have no idea if that's good or bad but at least it's something. we are waiting to see the GI Dr that used to visit us whilein the hospital. Thes offices and waiting rooms are disgustingly dirty! Gross! I'm probably more paranoid than usual because our last visit only made us sicker. I feel like we are going to offices in foreign countries... with today's technology and knowledge you would think they'd be smart enough to clean properly!

Tuesday, June 8, 2010

HEART DR - CHECK UP

Heart Dr. updated. We went to the heart doctor. He is really a nice doctor. He gathers all of her reports, labs, and then goes over them with us. Technically the PEDs Dr should do this, or even the GI Dr. as he ordered most of the labs.

The fluid is still lingering around her heart, but it is not getting worse. The part that has them all confused is that fluid around the heart is a side effect to a virus. This means that it only occurs in sick children or adults. Healthy people do not have fluid build up around their heart. The part that is so frustrating is they found the fluid around the heart and then she gets sick not just with a cold or virus, but to the point that she has to be hospitalized for weeks 2 different times. So they are at a stand still with the diagnosis. Obviously their is an underlying issue that anyone has yet to figure out.

As for the PEDs Dr. I am mad at him. I am mad at him for liking me. I am mad at him for ruining our Dr. mother/patient relationship. Now it is awkward. I do not understand how very intelligent people sometimes do not know how to act in social relationships. Perhaps if he would have approached things differently it maybe, sort of, quite possibly, might have worked out. MAYBE, but at least I would have been more open to giving it a chance. Instead he was overbearing and forward all in one day. I believe in fate, and things happen for a reason, but to throw all that out there in the first conversation with someone who isn't sure might be a little overwhelming.

BABY KISSES

Last night I was sitting at the counter with Madison. I had just made dinner. She looked at me after I gave her a kiss on the forehead, she patted my hand and made a kisses impression. It was so cute! She opened and closed her mouth to make the sucking sound of a kiss rather than squeezing her lips together. It was so sweet.

This morning was incredibly hard to leave her. She woke up in a bit of hysterics as if she was scared. I put her in my bed while I got ready. She slept while I changed her and even did her hair. She slept on my shoulder while I gathered our things and put her in the car. Once in the car she just stared at me while we drove to the sitters. Once at the sitters she was mad that I was leaving. It was so hard to let go of her when she clearly did not want me to leave. It frightens me that she is unhappy at the sitters rather than just missing me. It is so hard when the do not speak.

Thursday, June 3, 2010

My daughter caught rotavirus while in the hospital. I was told I could fight all charges relating to the treatment of my daughter while in the hospital due to their uncleanliness and disregard for hospital procedures. I wonder if that is true.

I took my daughter to the hospital for help as she was very ill. You try to do whatever you can to help your children. It is horrible to think that this caused her additional harm. Had we not gone there would she not have gotten as sick? On our first visit her bowels were poisoning her body, indicating there is a problem. They helped me get her stable and to help regulate her bowel movements and we catch rotavirus. Her tests were negative according to the doctors they tested her because there is a large outbreak going around of rotavirus. While in the hospital again they test her 2 more times and the 3rd time she is positive. It is near impossible to determine where exactly or how she caught this virus, but if we never left the hospital it makes sense that is where we caught it from. I just do not think I should have to pay this copay 3 times as 1 time they did an inappropriate discharge, and the 2nd was because we got sick from their hospital. The first visit there is and was something wrong, which we are working with that is understandable I would need to pay for that visit, but the rest is ridiculous!

I do not want to be an advocate for anything, but the way we were treated was awful! I am amazed at how many awards this hospital claims to have received.

EARLY MORNINGS COME FAST

This morning was tough. I did not want to move. I did not want to get up. I did not want to shower, nor wake up a sleeping baby. I made it on time which amazes me how much time I waste in the mornings as I woke 30 minutes later than normal. I managed to get up the sleeping baby and she was not happy. She even sat still while I put her hair into a pony tail.

When we were in the car she was singing to either the music or the fact that she could see in front of us. She just watches everything. It's as if all of a sudden she woke up and now she notices everything. I find it fascinating to watch her watch everything around us. It's unbelievable as to how this small child was once that small baby because they seem so different, worlds apart.

When we went into the sitters house she was fine. The moment I set her down she started crying pulling for me. I picked her up and she stopped. I wanted to sit with her all day and hold her as she looked so sad that I had to leave. She reached for me as I handed her off. I felt horrible leaving her while she was crying and reaching for me, but I really had no idea what to do. I suppose being with someone for 2 weeks without a break does that to someone. Then again I consider my feelings and know that she needs me as much as I need her, for I didn't want to leave her either and yes there are times when I wish I could scream and throw myself on the floor.

SINGLE PARENT LIFE

I was exhausted last night. Nights like last night make me bitter that I am doing this all alone. We went to the grocery store. I went hungry as I spent a fortune and had no idea what to make for dinner. How does that happen? I bought the strangest things that really do not compliment each other in meals. I figure I may have to be that person that goes by the store every day as I have no idea what to buy or what I had just bought to make meals for the night let alone the week.

My friends went to play soccer as I was too exhausted to even talk on the phone. Her father's mother called said her father doesn't have a job or a working car so he has no money. I love how everyone sticks up for him. He is that great of a guy that people defend him, but in reality he is a horrible friend, and a horrific father. He is just so wild people think he is fun. It amazes me how he gets people to stick up for him. I was that person for SO LONG. I defended him. I STILL find myself doing it. For what! He has done nothing for us, so why would I do that, but I do it. I love him. I loved him and I know he is an amazing person underneath all the stupidity and thug, but Madison doesn't know that. She doesn't know he is great. She doesn't know him at all. So to her he is nothing... and that should make me angry enough to hate him.

The worst part his mother tells me how hard it is, he doesn't have a job where his father owns the company. He doesn't have any money when he just bought a new quad a couple weeks ago. For someone who doesn't have any money how is he buying expensive pieces of equipment. It angers me that I am going to have to pay about a $1000.00 this month for our hospital visits and copays and he is out buying toys. He has yet to call me to see how she is doing. In my head she almost died that is how bad it got at the ER. Does he not care, because I KNOW he knows we were there. People who are OKAY do not spend weeks in the hospital. I know it is a pride thing. He feels he has screwed up so bad he just keeps screwing up. His thought process is that, well I have already screwed up this bad what difference does it make... because he doesn't know how to fix it.

Part of me wishes he would get caught for all the stupid stuff he does or be punished for all the horrible things he has done. Then again I debate would it be better for him to be in prison or just ignore us... either way he is not part of her life. I feel as if he was in prison that it would be easier for her. I mean when she is older she would understand that her father was not around not because he didn't care, but because he had no choice. Even though it would be hard (like it isn't already) at least he would have an excuse.

My parents suggested selling couches. These are NICE couches which I would never buy something that expensive, nor would I get half as much for them as he spent on them. However, they are downstairs couches as there is no way they will fit in up my stairs and of course my downstairs is too small for them. So I may have to sell them, and then at least I could afford her hospital bill. So frustrating!

Wednesday, June 2, 2010

NEW CAR SEAT

Madison rode facing forward today! She's growing older just not bigger. She loved it! As we left the sitters she bounced forward and sang zoom zoom.

She seems like a completely different person which is crazy to see the change within a week. I was a little concerned as she felt warm when I picked her up. Possibly too much excitement. I work again tomorrow so we shall see.

Tuesday, June 1, 2010

BABY SALE

I got the hospital news that I owe a small fortune for our month event. I considered selling all previous outfits to help pay for the damages as her father is MIA.

Perhaps a craiglist or ad stating the baby sale. I was condsidering selling them $2/item. We shall see.

NEW BIG GIRL THINGS

Madison must have been more cooped up than we realized. No walking even if she could she had an IV in her foot. She couldn't crawl anywhere it was disgustingly dirty. Not like it mattered we got sicker from staying there anyhow.

Last night night we went to The grandparents house for dinner. She was so excited. My dad held her up and she stumbled around trying to walk. It was so funny but so unrealistic. These tiny tiny twigs cannot hold up her body. Plus she sticks each step out so far. It's so cute. She wants to walk so badly!

We bought a facing forward car seat tonight. I spent a good amount of money on this oversized large decortive piece of plastic! I read the top 20 car seats and baby carriers. My baby carrier was number 2 so I wanted to make sure this was a good one. It was the top of the list so I hope it works.

We put her in it before installing it. She thought it was fun. As we were getting ready to leave she threw a fit and turned backwards in her seat. I had to sit in front of it on the floor until she calmed down. I think it scared her but she seemed okay while driving. My biggest concern is she so tiny but long ebough for it. The weight requirement is 22lbs and at 17lbs I get a big nervous. .

LIBRARY BOOKS

I feel like Madison grew a months worth in the hospital. We were so overwhelmed and bombarded by the tests, vomit, and dehydration that we failed to notice.

This weekend was the first time I noticed how much of a person she is rather than a baby slug that just sleeps. She's actually become more entertaining and hysterical to watch. I was working at the kitchen counter as I have yet to return back to work, but Madison was playing in the living room on her chair. She was trying to climb into her chair while holding her library books. It was so cute. She realized she couldn't hold the books and climb into the chair so it was fascinating to watch especially because she babbled like she's talking herself thru it.

My sister was shocked that we have library books... We've been going to the library since she was a month old. At first she probably had no idea but now age grabs her book and will drag it across the floor to the couch so you will read it to her. It's funny how we generally get about 5 or 6 at a time but she ALWAYS chooses the same book for you to read. Now that we bought a TV I am tempted to try the baby can read deal.