It's been a while...

I haven't updated in a while... mostly because I know nobody reads this and 2... I have been trying to keep busy so I don't think about Lincoln's biopsy results that are STILL not in.  So much for 5-7 business days it's been almost 2 weeks.  I called the other I need more information.  Or a mighty xanax.  zanax however you spell it.  My whole body is tense and I don't realize it is until I make myself relax.  We better know soon and he better be okay.  More later I am going to do something... probably clean even though I don't want to so I stop thinking about what is actually going on.  OH and it's Father's Day!  Happy Father's day. 

GOOOOD MORNING vietnam...

Not really Vietnam... Good morning Temecula... or wherever the heck you are. One week from today Lincoln will be having his biopsy done. I can't wait until it's over and he is healed. :)

The 7th, Lymphoma??? and cupcakes

I feel sick right now. I probably shouldn't be blogging while I am down but the kids are finally asleep and I feel like typing. I don't know what I blogged last. We went to Loma Linda and the dr has decided that since Lincoln's lymph nodes have gotten bigger and have now spread into him underarms and groin area that it is time to biopsy and check for lymphoma. The biopsy will be on the 7th. I want to throw up, cry, punch something and have Taylor hug me all at the same time. Some moments I am fine. Life goes on... we found Lilly and Captain a new home. Since Cap is now not on the porch we decided that maybe adding a few happy decorations to the area would lift our spirits. We went to Big Lots and Kmart. Got flowers, a wind chime and seat cushions. I then found a cute little tikes swing set with a slide and a swing on craigslist. The people happened to live right around the corner and the price was right. I was really happy. Link only got to play on it for a bit. We will go out and spend some time on the patio tomorrow. :) It's nice to be able to hang out there. The tree in front of our place has gotten big enough to shade the area from the sun. I miss Captain but I am SO HAPPY that we found him a good home. That was our Memorial Day. Still in the back of my mind I keep thinking about the 7th. Lincoln's surgery. The biopsy. Either my baby has cancer or he doesn't. Either this will give us answers or it's back to the drawing board. I feel for the first time that it's out of my hands. I have pushed and pushed for these doctors to help. Now... they are doing what I have asked and it scares me to know what is going on in his little body. I pray that he doesn't have cancer. I pray that if he does he is able to fight it. I don't know what is ahead of us I just know that no matter what... we will get through this. He will be okay. I want to say that I know he doesn't have lymphoma. Everytime he turns his neck and I see those lumps in his neck it makes me wonder if maybe I am wrong. Makes me wonder if he does HOW... how could this happen? Is it what he is eating? Where we live? Our pets? Our detergent? Our house? Is it environmental? I can drive myself crazy trying to protect him but I don't know what to protect him from. At times I feel helpless and at other times I feel empowered. It's like a rollercoaster of normal and scared. I hate it. For the first time in so long things are so good. Taylor and I are good. Life is good and now this. Nothing in the world seems to matter as long as your kids aren't healthy. It's funny how just a few months ago I would want to shop or go to forever 21 and spend money on things that 'made me happy'. At this point the idea of shopping or clothes or shoes or makeup just doesn't seem to matter. Instead our money is being spent on food. Good food. Healthy food and I hope it's helping. I know it is. Maybe it is my imagination but I sorta feel judged. I don't think there is any way that anyone can possibly understand what I am feeling unless you have seen your child sick like this. The more you learn the more it tears you away from what is mainstream. Food... activities... birthday parties... it's amazing how EVERYTHING seems to revolve around food and a certain way of thinking... My normal isn't the same normal as everyone else's anymore. I am okay with that. I think it is time for me to find people who have the same normal as my family so my kids don't feel like hippy freaks. :) LOL but really... I understand why people homeschool. I get it... it's hard to see your 2nd grader come home from school with blue frosting all over his face while he is jumping all over the couch and can hardly talk to you because he is so hopped up on sugar. I really didn't give it much thought. I would think "SWEET! You got to eat fun food at school!" and now I am horrified thinking "HOW DID YOU GET THAT?!?' School policy says parents can't take sugary foods in! I know it's totally acceptable for the rest of the world to eat cupcakes and popsicles but if you had any idea what hoops i jump through to make sure my kids don't have that. I dunno... just what's on my mind right now. Thinking of starting a play group with families that have food allergies/sensitivities/intolerances. Just seems like the thing to do... Have people understand not only because they are family and love us but to meet people that understand because they are going through the same thing as my family. It's very easy to blow off all that we hear about food and blah blah blah about organic is better, gluten is bad, processed food is okay sometimes... until you or your kids are sick. Until you aren't sure if your toddler is going to be okay... until you are holding him at night and he is screaming in pain in your arms... until your newborn is pooping blood and then you know... it's time to start digging. It's time to start doing your own research for answers and not only learning everything you can about getting your family better but actually taking the initiative and DOING IT. For the first month I craved junk food and I missed my oreos, coffee and pasta. Now the idea of having it in my house really bothers me. Ignorance in this case isn't bliss... it's sick little kids. I'm going to fix it! But first... I need to clean the kitchen and get some sleep!

Thursday....

So... Everything seems to be going well. Dylan's thrush is FINALLY under control. I kept calling to say that the Nystatin wasn't working and they finally gave him a stronger prescription. I don't know what is worse.... taking a low does every day 4 times a day and not having it work or a stronger medication for 7 days and have it work. I hate giving the kids medicine but this diflucan is doing it's thang. Thrush is almost gone. It is no longer coating the insides of his mouth but he does have the remainder of a a thrush rash all along his bottom lip down almost to his chin. Poor Dah. He won't keep his little hands out of his mouth and his drool won't let the red patches heal.

So... I am wondering if maybe corn could be a problem for Dylan. The other day he had stool that had tiny bits of normal in it compared to the usual slime. (gross I know but nobody is making you read this) I am so mad at myself for not keeping a food diary. So now.. Caffeine free, Dairy Free, soy free, wheat free and gluten free.... what's corn anyway... Can't be too hard to cut it out for a week and see how it goes. I am hoping it's not egg or tomato but I will get there... first things first I gotta start somewhere.

I am reading Dr Dorris Rapp's book. She is heaven sent for a mom like me. She is full of so much information it's crazy. She makes it so easy to understand too.

Trying to go more organic with food and slowly replacing household items with more natural ones as we run out. Cleaners, deoderant.... wish I had the money to toss all this crap in the trash and buy everything all natural.

I am talking to a rescue about Captain. Hopefully they will find him a home soon.
Lilly has been adopted by Lara. :) I will miss her but I am so so so so so happy that she is with them. I couldn't have thought up a better home for her. The location... everything. Nolan is having a bit of a hard time but he is dealing with it pretty well. I think he knows he can see her whenever as long as they have her.

Since Lilly is gone I have been deep cleaning like crazy. So far I have only done our closet- goodwill clothing and items that we don't put to use, vacuum like crazy, clean baseboards, dust. I have done our bathroom- bleached any mold spots, got rid of all makeup and products that are just sitting taking up space. Our bedroom- new organic sheets that are SOOO cute washed in 7th generation detergent. Lots of removing dust and cat hair that you can't even SEE until you clean the hepa filter in the vacuum. Feels good to at least have that done. I will continue with the upstairs and do the boys bathroom. The laundry and the kids room... sounds easy, right? It will probably take me a week. LOL

dr switch and lost referrals! :(

So Dr Becker has been a great help...
1st visit- Full physical, no dairy (done), No Soy (on it), TB test for Link, thrush treatment for Dylan
2nd visit (2 days later)- check Links TB (not sure if it's positive- told to come back tomorrow- Becker orders STAT blood work on Link)
Later that day... got Xray results abnormal. (diffusley prominent interstitial markings and bronchial cuffing. cannot exclude infiltrate at right lunch base), Start freaking out and wanting to burst into tears. Pick up Nolan from his friends house. Try to relax while waiting for the blood work talk to a few family friends in the medical field. Go to a Bluesleeves family softball game and the Dr calls to say that BLOOD WORK IS NORMAL. phew. I can breathe. I feel my entire body relax not even knowing I was tense to begin with.
Visit #3 The following day. Still unsure about the TB test results since it is borderline but most likely normal. We will find out in bloodwork soon. Not worried about it though.

Mother's day came and went. Had a good day. :) Nolan gave me a card with a dollar in it. :) I love him.

Today I called to check on our referrals ENT, GI and Allergist and we have lost all 3 since we switched providers. So we push on. Hopefully I don't have to push at all. Hopefully Dr Becker will reorder them and we can just start over. I'm upset but there is nothing I can do at this exact moment so maybe I will take the little ones to get my oil changed. It's a little windy but it will be nice to get out of the house and concentrate on something else.

Nolan lost a tooth last night. :)
Dylan is starting to giggle. :)
anddnnndndnddd Lincoln just woke uP!!!!! gotta get him! :)

BECKER!

I have been waiting for May since the beginning of April. At the start of April my kids were both sick and I had just changed to Pediatric Partners since Dr Pillai wasn't helping us as quickly as I wanted. Well my kids had a rough April and Pediatric Partners didn't find it urgent enough to see my kids even with a fever so they sent us each time to urgent care (who then tells us to follow up with our ped who we can't get into!). We made it through the month. DARN my insurance for only letting us try one dr a month. I am so happy that May is here and I am hopeful that Dr Becker will be able to help us. So excited that I have booked the kids appts on the 3rd and 4th even though the 3rd falls on my birthday! Funny how I have been wanting a Dr. who will listen to me and if this happens on my birthday it will be the best birthday gift I have ever gotten.

My toe is finally feeling better. Hurts when I bend it but the bruising is gone and the swelling is almost down. My ankle is still a little sore but WAY better! I ran up the stairs yesterday and reminded myself how freaking rad it is to be able to move. Ohhhh the stuff we take for granted! ha.

Taylor and I had a talk last night about our kids and the food they eat. I get really annoyed when there is food in the house that has dairy in it. I can't eat it, Lincoln can't eat it. Everytime I leave the house it's in my face and everytime Link gets into the pantry I am hoping he doesn't get into Taylor's food. I just want it to be safe here. No screaming and crying because Lincoln saw something his dad is eating. It makes me mad, sad and frustrated that he and I can't have anything we want.

Did I blog about the nachos?? I don't remember but my poor link had a few nachos at Nolan's game not too long ago and sure enough he woke up from a nap shortly after we got home and he was screaming. His diaper had leaked diahrea all over himself, the bed and the carpet. He was crying and seemed to be in pain. When he gets like that it's almost like he doesn't want us touching him. He went to Taylor but he was still screaming non stop for about 20 minutes and still wasn't back to himself for about an hour after he had woken up. Taylor showered him and I washed the sheets but seeing him like that after just a bit of dairy is so frustrating! I hate that it hurts him so badly. We felt horrible. It was the first bit of dairy he had eaten since we took it away in Feb. It just reminds me of when I had french toast with dairy and saw the blood in Dylan's diaper. Reminds me to keep going and keeps me on track.

Okay... gotta clean. doing hair today!

life... and my trip down the stairs

Nolan is visiting Grandma Kathy. He was very excited to share with me all the fun things they have planned. It's funny cause when he is here he seems like such a big boy next to the babies but on the phone he still sounds like my little baby. I miss him. I miss his little ADD self running around and bouncing off the walls and begging to go play outside. :) He will be home on Friday. Jim is bringing him when he comes to visit.

Link is doing good still has the swollen node although it is a lot smaller right now than last week. The ENT has decided that we are going to go ahead and perform surgery on the largest lymph node to have it biopsied. It scares me but I just have this feeling in my heart that he will be okay. He has also go a bit of a rash that I am trying to clear up... hoping it's not a yeast related rash. :/ grrr He was in a diaper for a while while I was doing hair at my mom's. I don't think his skin is used to sitting in a gross diaper. It's already looking a lot better but I still see thrush on his toungue. I want the new Dr to see it so I haven't even tried treating it.

Dylan is stuffy again. Fussy and I am hoping this passes quickly. I don't want him getting another ear infection...

and then there is me. I tripped and fell down the garage stairs with an armful of hair product with the kids in the car. I just sat there on the floor stunned thinking I had just broke both of my ankles but I am okay. I ended up going anyway and did hair for 7 hours then drove home. I am proud of myself for making it there for everyone that was counting on me but I am thinking now I should have rested. I am pretty sure I broke my left toe. It's black and blue and all the toes are swollen. My left ankle seems to be sprained. Even though I was on my feet all yesterday the adrenaline has totally worn off and I can hardly walk. I tried walking on my knees and now I am pretty much crawling around the house to tend to the kiddos. I pretty much have gotten everything in one spot and that has made it a lot easier. I am on the couch surrounded by two sleeping little ones, diapers, wipes, powder, nystatin, crumbled up egg that Lincoln spread everywhere, cell phone, house phone, the remote control and a pen and paper. Going to the bathroom has been interesting since we have 3 levels. I have resorted to crawling up the stairs and then bouncing down on my butt all while hoping that Lincoln isn't squashing Dylan. I can't carry them right now... that's been fun. I can't wait for Taylor to get home so I can crawl upstairs and brush my teeth and have him make some food. I am starving... and I really don't want another hard boiled bright colored Easter egg... I should sleep while these kids are asleep. I was pretty uncomfotable last night on the couch and everytime I would move in my sleep the pain would wake me up. So much for pain meds since I am nursing the baby! :)