clothes clothes and more clothes!

Today was a day filled with shopping! (and this post is going to be filled with rambling about clothes, because its 530 in the morning!) It wasn't supposed to be. It was supposed to be a quick trip to macys. I wanted white t-shirts in the 6-9 month size. Or just some plain regular t-shirts that were not white. I'm really kind of lazy sometimes with the whole snapping of the onsie on the bottom thing...and thought it would just be easier to just have a t shirt instead. (we have had a few of them, and I love em). There were also some shirts that I have had this summer, that have a little collar, and have little shorts kind of with them. I love those because they are all in one, and if he doesn't spit up...they are really practical for the whole day if i'm in the house or out of the house. (I feel wrong taking my baby out of the house in ONLY a onsie...just because I think people would stare at me and wonder why my baby was not wearing pants or shorts....and I also feel that people would look at me funny if he was just wearing a sleeper. He doesn't like to wear pants/shorts a ton..but sure looks cute in them!).

I think I am having so much fun with this shopping though...because I get to choose everything myself. Most of my newborn and 0-3 month clothes, were given to me by my next door neighbors cousin, whos son was 4 months old when Cole was born. It was really nice of them. Without me going out and spending a ton of money on clothes, I got a little variety of each kind of thing...and got to see what worked well for me and what didn't...and what things I would never use. Cole probably wore normal socks twice. They wouldn't stay on. The hats wouldn't stay on either. I also completely fell in love with the fleece sleepers. Amazing. I had one newborn sized one and another 0-3 month one. Anyways, some of the clothes were just not my style at all. And, if they were not from the woman who gave me the clothes, they were from other family members (all of the clothes from my sister Brenda were amazing though!). Point being, that I didn't get to really pick out a wardrobe for him.
3-6 month size clothes, came brand new (still some used from the same woman), from everyone in the neighborhood and family members AFTER he was born...and they were all pretty amazing. A neighbor on the other side of the house, bought Cole a ton of little outfits (t shirts and shorts, and those onsie short sleeves with shorts things i mentioned) and they were all things I would have probably bought had i seen them in the store. I got to do some shopping too for some clothes, but admittedly, I purchased more things for him that would be 'fun' to wear...more than stuff i would just use every day. (I got him a little set with a onsie, soft pants and a matching hoodie...I love hoodies...but its summer...and I havn't had him outside on a cold night yet...I bought him two pairs of jean shorts...one pair he wears because they are soft...the other he hasn't worn once..and so on)
So, starting with the 6-9 month size of clothes, I get to really pick it all...hehe. Ok, So I'm going to get back to the whole shopping today part again!
I went to Macys, and started looking at the sales racks....for the baby tshirts I wanted. I found a colared tshirt on sale, then of course saw cute button up shirts and jeans and had to buy those in the 12 month size. I wanted to get a sleeper in the 6-9 month size, but I didn't LOVE any of the ones in that store. I found a pack of onsies, that were plain, in colors I liked, but they didn't have them in 6-9 month (so i got them in 12 month). Since we were in the mall (it was me, my mom, and Cole) I asked her if it would be ok to go into another store real quick. (we were only supposed to stop at one, because she was then supposed to meet her friend over at home depot for a very important carpet buying decision...lol). She said sure...so we went to bon ton. Their clothing selection was very limited....but they did end up having a very cute hooded sweatshirt for 40% off. As well as a white long sleeved onsie in that kind of long underwear/thermal kind of fabric. Still on my search for a white t shirt...my mom took the car around to the other side of the mall to JC Penny...as I walked over there with Cole. Found some more stuff...like a fleece sleep sack for ages 0-9 months. Awesome way to keep Cole's legs warm for the baby who doesn't like to wear pants..and kicks off blankets as a hobby. All of the sales racks were filled...with hardly anything in the 6-9 month size. Got some long sleeved white onsies for 6-9 months. After this, my mom walked over to home depot. I went on to lord and taylor. Their selection was only as big as bon-tons...but wow everything was expensive. This was the first store that had a winter jacket I liked for Cole...so I got it...and it ended up being 40% off at the check out counter. They had an amazingly cute snow suit, but the size would have been too small....maybe this is something I could find at goodwill (family friend gave Cole an LL Bean tobagin/sled thing as a present for the winter...I can't wait to use this thing like crazy and don't want him to get cold!). I even stopped in gymborie...nothing. So, I went to Sears. Sears, by far, had more of what I was looked for. The onsie shirt/shorts things on a huge sale. Had some t-shirts with prints on them but they came with shorts (so i didn't buy them). They had joe boxer fleece sleepers on sale for 40% off (I swear all the cold weather stuff was 40% off today...while all the winter weather stuff was at least 60%). I got FOUR of them, in the 12 month size (can always move up in the sleeper sizes quicker...a few of his 3-6 month sleepers are a little small now).
So, after going to 6 stores and buying things in 5 of them...I had a lot of clothes. I thought to myself how strange I must have looked. I was wearing a 10 dollar dress from old navy, that I had previously tripped over since i'm short that had a rip on the bottom....and I could care less. I HATE shopping for myself. But shopping for Cole is so much fun!
I tried to line things up, with the rate he has been growing. I also have no idea when the weather gets cold up here. When I was younger I can remember being in fall clothes in september...but now I think it may stay warm up here until october.
The sad thing is though, that this isn't the first time I have bought 6/9 month clothes or 12 month clothes. I bought some a couple of weeks ago too (but not a lot).

my health

I have had a kinda crazy health history....In high school I used to be thin/average weight, in good shape and in pretty good health. When i was 16/17/18 I started getting sick more often. Gained weight very quickly as well, due to a sensitivity to steroids as well as hypothyroid. When I was 18 and still in high school, my ulnar nerves in my arm('funny bone') started not working so well. I would drop things (like my bow), I would get shooting nerve pain, then pins and needles, then numbness. When I was 18 in college I got strep throat/tonsilitis. I was on antibiotics for almost 8 months straight, until I got surgery in June of 2004 to remove my tonsils and part of my throat. (Had to get rid of the infection somehow if CIPRO wasn't working...) That experience was seriously on par with childbirth (I can't actually say that now!). My mental state went completely down hill...I was sick all the time. I stopped school...started living between my moms house and my then boyfriends apartment in new york city still...and got some much needed mental care. Got working out every day, which made me feel a whole lot better....and I made the choice to move back to New York City and take some classes. I ended up back in music school again, and did pretty well that year. I, of course, got sick more often than most people, but I made it through. I was engaged by the end of that school year, and we moved down to North Carolina. I had auditioned and gotten in to a cheaper school, only to find out I needed to take 5 more classes at a community college to really transfer. (difference in requirements between conservatory, and a state school with a music program). I finished about a month of school there, until I started getting really sick. My breathing was terrible. I kept getting broncitis, and then developed pneumonia. My oxygen levels were low, and I ended up in the hospital. I started getting rashes a lot, that would turn into a staph infection before I even moved to North Carolina...but they were very localized. Now, they seemed to be taking up more of my body. About the third time in a nearly a year, I was admitted to the hospital again for breathing, to shock the medical staff that at that point, I had lost nearly all of the first layer of my skin on my body (except half of my face). I ended up getting an awesome dermatologist, and got a diagnosis of pserioform atopic dermatitis with eosinophils. Eosinophils, are a type of white blood cell that combats allergies. The answer to lowering this number of white blood cell in my body and getting my skin back? Oral chemotherapy medicine. I was so tired all of the time. About 3/4 of my hair fell out...and what was left was so thin I cut it...and it stopped growing. My teeth got HORRIBLE. Falling apart. My eyes were sunken in and I looked tired all of the time. I started this medicine in 2007. In February of 2009, I stopped this medicine...I was sick of it. Slowly I started to feel a little bit better. A little bit more energy. In July I was pregnant with Cole. In August, I saw a show called mystery diagnosis, on discovery health channel. I saw a woman, who kept getting sick all of the time. Infection after infection. She started having nerve problems. She got a rash on her entire body. She kept getting pneumonia. They found out, she had a high amount of eosinophils in a lung bioposy. She was diagnosed with a condition, called Churg-Strauss.

http://www.cssassociation.org/about_the_syndrome.asp

Just looking at the list of symptoms...I have about enough already, that would give me this diagnosis. But, other tests, could not be done during pregnancy.

During my pregnancy, I was hospitilized once for breathing issues. Besides that, I went nearly 9 months without having an infection. I never knew that was possible. My eosinophil levels were in normal range. Pregnancy is amazing when it comes to issues like this. Its classic for auto immune issues to go into remission when you are pregnant. Within two months of giving birth, I had already been on 4 rounds of antibiotics (2 rounds for tooth infections, and got 2 pulled, one for broncitis and one for pneumonia), 2 rounds of steroids for breathing, (and I am very sensitive to steroids). Just yesterday, I started on my 5th round of antibiotics since Cole was born, for what again? Broncitis. And, another round of steroids (and, due to my sensitivity, have already gained 6 pounds...the swelling hurts...but it dramatically helps my breathing).

I saw a pulmonary doctor for the first time up here at the very end of July. I told him, that I did not have a diagnosis of churg-strauss syndrome, but it was something I was trying to work on getting a diagnosis of with my primary care doctor (I just want a yes or no...something has been going on for years...and I just want to know WHAT it is). He gave me yet another inhaled steroid to try (lasted 2 and a half days til the symptoms i knew i couldn't put up with forever), and did some more allergy blood work. Found out I am really really really allergic to dogs...doesn't help when I'm with 4 of em. I saw him again on the 13th, and I am a candidate for a new drug called Xolair. It works directly to attack the IgE levels in the blood...the levels that respond to certain allergins like dogs, cats, dust, mold...all of that stuff. He has had a lot of success with this drug, but it does come with some serious possible side effects. For example, I will be required to carry an epi pen around with me at all times. I could go into shock. I need to get this shot every two weeks, and can only do it in a doctors office. When I move and don't have animals, I can go to every month.

I was doing some more reading about it, and found out that it has a .5% chance of causing cancer. Lovely.
And then I see something that is kind of shocking on the Xolair website, in the perscribing info...having to do with this little known churg strauss syndrome of all things...

"5.5 Eosinophilic Conditions
In rare cases, patients with asthma on therapy with Xolair may present with serious systemic eosinophilia sometimes presenting with clinical features of vasculitis consistent with Churg-Strauss syndrome, a condition which is often treated with systemic corticosteroid therapy. These events usually, but not always, have been associated with the reduction of oral corticosteroid therapy. Physicians should be alert to eosinophilia, vasculitic rash, worsening
pulmonary symptoms, cardiac complications, and/or neuropathy presenting in their patients. A causal association between Xolair and these underlying conditions has not been established."

So, I might have Churg-Strauss, or something very close to it...but if I don't...I could just take this medicine and get it anyways. Hm. It doesn't say anything about the safety of this medicine if I DO have this though. Churg-Strauss is grim enough, without having to make it WORSE. (In the most recent study on life expectancy, only half of the people in the study lived past 10 years after diagnosis..problem being that the eosinophils attack the entire body, including major organs, thinking its something your body is allergic to. You are literally allergic to yourself)

I just want to know whats going on here. By now, I don't have any feeling from my elbows down into my hands on one side of my arm, and don't feel my pinky finger or half of my ring finger. I have muscle degeneration already on my right hand. I was told, that if I don't get surgery to move the nerve into the inside of my arm, I won't have enough dexterity to continue to be a musician in 10 years. I also started getting neuropathy in my legs, and got an MRI a few months back that I find out about on Friday.
I have lymphdonopathy...which is a fancy way of saying enlarged lymph nodes...that stay large.
My eosinophil count in my blood is already double 'normal' levels again...and the rash is started to show itself again on my right hand and on my head. I don't know what my level is on my skin now.
Still, I am having infection after infection after infection...and more serious breathing issues than I ever had growing up with asthma. I have gotten pneumonia way too many times in my life.
I have had heart issues, that seemed to get better while on the oral chemotherapy, most notably, pitted edema in my legs. Pitting edema is most commonly caused by two things. Either a) high sodium level (mine has actually been low or low normal every single blood test I have gotten) and b) a heart valve issue (I have a slight mitral valve prolapse, but nothing that could cause edema. A less common answer for it, is a vasculitis condition, which churg-strauss is.
All of these, are symptoms of Churg-Strauss syndrome. I just have not found anyone to put together the pieces yet. And now, I am freaking out, because I really want to breath. I cannot remember the last time I didn't wheeze...or was able to take a full breath.

All of these things, are going to effect Cole. I need to make my decisions with him in mind. He needs a mama who can breath...so I can play outside with him. He needs a mom who isn't sick all of the time. I need to figure this whole thing out...and its still just some huge waiting game...with doctors not really communicating with each other.

Doctor day

So, we went to see his GI specialist today. He was 15 pounds, 6 ounces....and they said 24 inches....but he was 24 inches a month ago and its obvious to the naked eye he has grown since then...so who knows...lol.

I'm thinking of renaming my blog to the amazing adventures of baby poop. No, not really..but...seems fitting for the moment lol.

He has been on only neocate junior for a little while now...but...on saturday the little things of mucus I was still seeing that I thought were just still happening from breast milk...are obviously now happening again. There was blood again. I mean..come oonnn now. How can he really be allergic to hypoallergenic protein free formula? Really? So, there is one more to try. Its called elecare...also prescription but this one is from the makers of similiac I guess. We will see how this goes. He might be doomed to pooping mucus out of his butt forever it seems like...I am so at a loss. She also thinks his screaming might be muscle cramps...but I dunno what to do for that? (He does this thing...where out of no-where...he screams and cries like he is seriously in pain...and then is fine in about 30 seconds to a minute...I have no idea what to do for him). Also, since he seems to be spitting up more than usual while taking the zantac, he is being switched over to a different medicine for his reflux. (when he doesn't take the medicine he isn't spitting up as much anymore...but you can hear him spitting up into his mouth and swollowing it...and it effects his voice...sounds really raspy).

I'm just kind of at a loss right now though....mostly because on saturday...when I looked at his diaper...it looked EXACTLY like the diapers he had before we even did the switch to formula. Exactly. So I was thinking maybe it wasn't food allergies. Thinking we did all of this for nothing...and its really something else. She said today though, that this is the only thing it sounds like. If he doesn't tollerate the elecare, I am going to be doing my own research of things to bring up to see what she says about it.

poor baby

Its the end

Well, I think its the end of my 'breast feeding' days...and it has me pretty sad. Its gotten to a point where If I do continue..its going to get kind of crazy. With my last blog..I thought maybe he was doing well with it. My mom changed a diaper when she was watching him...and said it didn't look good. Then the next few were mucus. This is without dairy, or soy, or corn, or eggs, or tomatoes. Then, starting two days ago...a skin reaction started. I had read, that baby acne can be caused by a hormonal reaction, and also by a food reaction. Well, he had baby acne..and it went away. But now...he has spots all over his face and his chest. He even looked like for a few hours that he might have been getting a tiny case of hives. The next step would have been cutting out rice...if that didn't work...then wheat or gluten...and I have been going at this for what seems like so long. I hate the whole 'I tried, it didn't work' excuse. I know this is me being somewhat selfish. If only blood tests could be done to tell me exactly what he is allergic to, things could be different. I honestly believe that he is not allergic to everything...I think its just 2 or 3 things and I can't pin-point what they are. Its going to be crazy when he does start on solid food...because then he starts from HIS elimination diet (of Neocate Junior)...and I can try one thing at a time with him. It will be easy to tell what is causing him a reaction and what isn't.

I am still struggling with what I should eat though. Should I just keep the dairy and soy out of my diet, and the corn..just because of everything I have read and learned about how it can be bad for me? It was so much easier cutting these foods out when I was doing it for Cole. But for myself, letting these foods back in could mean I would start eating horribly again...not that I'm eating so great now anyways. I think I need to seriously think about what foods I should and shouldn't eat for myself though...and stick to a 'diet' that will be healthy for me. I need to loose this weight for my health...and I also need to do it for Cole. I remember when I was a kid, about how mean kids can be. He already is going to have to deal with the whole 'no father' part...I don't want him to have to deal with being embarrassed with the 'big mother' part too.

8 more pounds to go, until I can really start exercising...would have been there already if it wasn't for the two courses of steroids my body doesn't tolerate very well...

On a good note, yesterday Cole got his jumperoo! and he LOVES it! He is still too tiny to reach the floor...so he needs a pillow under there...but he loves to bounce. I got the precious planet blue sky jumperoo...and he keeps staring at this red and yellow ball on it...hehe. I also got my car. I like it in the white. I still need someone to help me out for a few minutes though, as I cannot judge the distance on the front of it. I went to park at wegmans yesterday to pick up my prescriptions...got out of the car...and saw I was 6 feet away from the car in front of me...lol. I am still totally terrified to drive though. When going down a main road..and cars are pulling up and stopping at stop signs..I keep thinking they are going to drive through them. I keep hearing the accident. Driving on the interstate is the only place I don't freak out. I think the other reason, is that in the Jeep I really had NO blind spots. I could see everything...and could completely trust my mirrors. Other cars don't have this luxury. I keep looking over my shoulder and the mirrors and still second guess myself.

Today, I am heading off to my grandparents on my fathers side. Maybe they will go baby crazy and I can take a nap...lol. For the past couple days Cole has been really fussy...and waking up every two hours. I'm exhausted.