So.....

I apologize for my delay. We have had a lot going on in the our lives right now, and writing is something that normally takes a great deal of time for me. For those of you who are connected with me on Facebook, you have been following Katelyn. The sweet little 7 year old, who shared a room in the NICU with Eli finally had her Colonoscopy done. Unfortunately, it did not goes as planned. I'll try to explain this briefly without totally chopping it up (forgive me Jade if this isn't said right) when undoing her colostomy, they ended up using her appendix as a portal. It is was meant to be used as a "flushing" area and not as a mickey button. Due to her low iron levels the staff was using it to send the iron to help her iron levels go up and basically when the doctor when in to look around, everything was black. So the poor girl went through all that prep for nothing. She hasn't eaten since Friday and is extremely hungry and now they are setting her up for another prep of the Go Lightly, which is hard on a regular person's system, let alone one wiped out little girl. On top of that, it means introducing the scope again, to her already delicate intestines. They are trying to locate the cause of the bleeding, but in doing this, there is risk for causing even further damage. Her iron levels are still hovering around 8, which 7.5 is transfusion level. Thankfully, she hasn't had to have one yet, like they initially told her Mom. Still, the threat looms. I used to think blood transfusions were no big deal, till Eli had to have all of his. So please hold Katelyn in your prayers as well as her Mom, Jade, who is exhausted and frustrated like any good Mom would be. So with all that going on, on top of that, there is my unpredictable situation. I so badly want to be at the hospital with them and can't due to my own issues, which is beyond frustrating. I did meet with a new family physician who admitted right off the bat, he probably wasn't going to be able to change my world. I liked his honesty and he also seemed to be aware of not making to many appts. due to all the co-pay/insurance issues. My other doctor was nice, but seemed to need to see me for every little thing and then had no real direction for me to go. Not that I blame her, but I just felt I needed to take the bull by the horns and advocate for myself so I can be here for my family. So my new doc has ordered a good chunk of labs to help me find out where my balance is off. I should get those results back next week. From talking to him, he already figured out that I wasn't getting enough salt! SALT!! Who would have thought something as simple as salt, has actually impaired my thinking and almost caused met to lose consciousness while I was driving! I need it to keep my blood pressure up. I have always consumed mass quantities of salt due to my kidney issues. When Eli was alive Dr. Bunchman had asked me if I liked really salty things like pickles, olives, chips. I told him, I'm like a deer who would rather go lick a salt lick than eat a cookie. He explained the whole biological thing behind it, but in essence, I need more than the usual person. With my whole meeting calories and not having high fat, I have cut out a good portion of my sodium. By the end of the night, I'd be like a car without any gas still trying to coast into town. I'd be sputtering and just about pass out. I kept on telling the other two doctors about this, but the only answer I got was that I was malnourished. This Doc just said so casually, "I don't know, try eating more salt." I went home and was able to eat some Baked Lays and some crab (which I haven't eaten in a month) and I perked up. I still feel like I ate a Thanksgiving dinner after even the smallest of meals, meaning, I get really exhausted. Apparently, I am not absorbing nutrients like I am supposed to, but I am meeting with a dietician tomorrow who I am hoping knows about this and can help me know how to balance my diet better. I have a long road ahead of me and I am riding on blind faith in G-d that He will see me through. I feel like I am in such a thick fog, that I can't even see on step ahead of me. I am reminded each day how important it is to trust in the Lord with each moment, or else I find the fear creeps in and whispers frightening thoughts. I still have my moments in which I have had to throw all my pride out the window and ask others to pray for me since I get desperate. It's hard, because I start to wonder if I have any faith that I need to ask others to pray, or I feel I am a burden and a whiner, which I know are lies. I keep on holding on to hope and that Glory will come to G-d through all of this. On some a positive note, I seem to be maintaining my weight, praise the Lord! Especially, with the salt. I don't know if it's true weight gain, but it added a couple of pounds which has made me feel better. As far as the next step we are looking at doing the Erythromyacin, which is an antibiotic. I am wary of this for two reasons, one, that when I was kid it did not agree with my system at all. Two, Elijah died due to antibiotic resistance (E Coli). I guess this is something you take in a lower dosage off an on. I don't know. Right now on good days on my own I can clear 1,500 calories, but when the bad days hit, it's a struggle. I know before I go to another medical specialist, I probably should retire all alternatives. I am just concerned to start this one, since I don't want the nausea/vomiting and all that jazz that comes along with taking an antibiotic to throw my weight down. My goal is to just be stabilized and then try the next step. I am working against the clock, so I know we have to try soon. I'd really love to just hold things to the point that even if it means not going back to my yummyliscious way of eating, if I could just eat the basics and maintain where I am at and still be healthy, for now, I'd be okay with that. Seth made pizza casserole yesterday. This is one of his favorites from when he was a child. It basically consists of pizza sauce, noodle, hamburger, and cheese. I don't know what else is in it, but he was happy to introduce it to the kids. Lately, I have been unfazed by food, until yesterday. If you know anything about me, I have had acid reflux for years, so me and tomatoes are not friends. I like them, they just don't like me. So Seth pulls the casserole out and I wanted to shove my face in that dish and lick out every last morsel!! I have never even liked this stuff, so I don't know why I wanted it so badly. I literally paced back and forth while they ate it. Aria was squirming in her seat and didn't want anything to do with it. I so badly wanted to take the plate and run and hide in a dark closet and eat it all by myself. Then I realized, why would I hide? Seth would be happy to see me eat with them. The problem would be hiding it from my stomach, so my stomach wouldn't know. Sounds a little nutty, but lack of food will do this to you. Seth kept on encouraging me to take a bite, but I didn't know how the acid would react to my stomach. With the cinnamon it was like someone had a blow torch on my whole chest area for hours and I just knew I am was to tired to sit up all night, especially with the kids being sick. So, I didn't (sigh). I have been trying not to shake up my diet to much during the week, I don't want to have to rely on others to watch my kids for my own selfish wants. It sure did smell good. I know my GI doc said it's a good thing that I still have an appetite, so that gives me hope that I will over come this. I have a lot that I am learning. I am so grateful to G-d for all the little things in my life that I have never noticed. I am also so grateful for our family and friends. I have felt so isolated with all of this, not because of people, but because of the circumstances. I have made new friends, connected deeply with family members, and even have reconnected with relationships from my past, I feel truly blessed. Without the support of everyone, this would be so much harder to handle. Our friend Tara did my hair like she always does and she even colored it this time, just to make me feel a little wild! It was so nice to look human for a change! On top of that, her and her family ended up watching the kids for us so Seth and I could have some down time. We were supposed to go to the beach, but I quickly realized I wasn't able to. Still, just having that time to be alone and knowing the kids were being played with was priceless! This family has been amazing to us and I am so grateful for all of their support and our kids just love being with them. Seth has been running nonstop since all of this started. As soon as he comes home from work, he has to watch the kids, cook, shop, he tries to pick up, and each night seems to end at midnight, even though he has to get up at 5 or 6 in the morning. I feel terrible and I try to help out where I can, but most of it falls on him. He rarely complains and just seems to be more concerned that I feel alright. Trust me, we have our moments when the kids are freaking out and it all comes down, but by the grace of G-d, we dust ourselves off and try again. Isaiah loves school. I am starting to see he needs more coaching on learning compassion and empathy. This is something I am struggling with teaching him, especially with my patience being so low. Still, he makes me laugh and is always good for a informative report on his latest interest. I have noticed he is desperate for my affection, so while I can't do a lot, he seems just as happy to have me sit and hold his hand. Aria, my little wild child. She is the queen of mimicking. You just have to show her one time how to do something and she masters it. She has more of a competitive streak in her. Isaiah and her race each other all the time, but since she is so much smaller, she always loses. We have tried to teach Isaiah to try and let her win sometimes, but as soon as the race starts, the drive to win is more on his mind than being nice to little sis. I got to give her props though, she still keeps on trying. She is much more determined to master things, especially if they are hard. They recently have started Awana, which they now love. I am trying hard to do well what I can do with them, even if it's just sitting and reading a book. I am into my new bible study about David and it is everything and more of what I had hoped it to be. I am excited to be meeting a new group of women and look forward to getting to know everyone and be SOCIAL! So now I just have to get over my fear of being embarrassed and just suck it up. I'd rather be involved with community and have some issues than sit at home and feeling isolated. I know sometimes I just might have to, but on those good days, I want to take full advantage of what life has to offer and try to get out, even if it's one day a week. I have a wonderful life as imperfect and frustrating as it can be, I am so grateful to G-d for allowing me to be here. Please continue to hold me and my family and Kate/Jade in your prayers. Trust, peace, and healing are at the tops of my list. Thank you for walking along side of me in this journey, your prayers and support are so important. It's so nice to know that I am not alone in all of this. Watch, pray, believe, and be amazed.