Just a quick update

The sickness has left our house & life is getting back to normal. We fired our weekend night nurse before her 2 weeks were up because she kept canceling & we were just done with dealing with it. Thankfully, our weekday night nurse picked up some extra shifts so I was not having to do Autumn duty more than 4 nights straight. Today we met a new nurse who will hopefully be our new weekend night nurse. She seems nice so hopefully it will work out. She has trach experience but no vent experience so it will be a little while before we feel comfortable leaving her alone with Autumn. The vent really is not hard to learn it's really just about getting to know Autumn & how she is at night & just recognizing the different sounds of the vent to know if there is a problem. I'm praying she's a good fit for us & will last a long time working for us. Our other 2 nurses have been with us for over 3 years but it's the weekend nurses we have issues with keeping since the hours are not the best. This nurse looked for a weekend night job so that she can spend more time with her kids during the week so hopefully it's a win/win for everyone. We took both boys back to get lab work done. I received an e-mail that Gage's thyroid levels are back to normal range so decreasing his medicine just 1/2 tab on Sundays worked. Noah's lab came back normal so does not look like we are dealing with anemia issues. Thankful for good reports on both boys. I decided to finally go to the allergy doctor so tomorrow I will be going in for testing to see what I am allergic to & see if I need allergy shots or just need some good prescription medication. Crazy thing is I have not had an allergy attack in 3 weeks since I first made the appointment. Go figure. Last week Madison did a project where she had to live like people do in countries with very little. She had $10 to spend for food/toiletries for the week. She had to average out only using $2 of it a day. She bought hot dog weenies, Ramen noodles, bread, peanut butter, deoderant, shampoo, & a toothbrush & paste. She had to boil any water she wanted to drink. Took cold showers. Only wore 2 outfits those 5 days with no make-up. She could not use electricity after dark & no electronics unless it was homework. No TV as well. If she wanted anything extra, she had to work for it. So, she cleaned our master bathroom for her earrings so the holes would not close up. She swept & mopped the hallway for a hair tie. She swept & mopped the entry way for a bandaid. She scooped poop the in the backyard for a hair brush. She also changed the sheets on Gage's bed for some mascara & organized my coupons for some lip gloss. I was so proud of how she really wanted to stick to the project & not cheat. Oh, she also did another chore for 2 pieces of garlic bread one night but forgot what it was. I think she learned a lot. She hates Stouffer's lasagna & one night we had it for dinner while she ate her Ramen noodles & she said she would do anything to eat some. :) She expressed how she realized she has such a good life. She realized she could go with less as well. I love that her teacher offered this assignment as a 100 test grade to really show these teenagers how well they have it in America. It was an optional assignment & so glad Madison wanted to do it. Well, that's what we have been up to...better go get ready because Autumn has vent clinic today.

My pity party

Sometimes I just have to breakdown & cry. Autumn missed an entire week of school & started doing better last weekend. As soon as she started feeling better, both James & I got a sinus infection. I finally called to make an appointment with the allergy doctor. The soonest they can get me in is February 12th. :( I am just so sick of being miserable & not feeling like myself. I had a little crying moment Sunday night because I was not feeling well & going through my little winter depression I seem to deal with every year. I am just ready to feel normal again! I finally started feeling better by Wednesday. I received a call from the boys endocrinologist this week. Gage went in December & his thyroid levels were slightly high so we are having to adjust his medication. We now have to take him back in for lab work this week to see if they are now good or if we need to adjust more. Noah went in January & his blood work came back showing signs of anemia & blood in his urine. So, we also get to take Noah this week for more lab work as well. I hate taking my boys to get blood work. They both cry, Noah kicks. It's no fun! Why do my kids always have something wrong with them?! The good thing is that Noah had grown 6 inches since July & gained weight. Yay! Also, this week...I was on Autumn duty 3 nights in a row & she decided not to sleep 2 of those consecutive nights. Sick & tired is not a good combo for me. James was also gone 3 evenings this week so I was on kid bedtime duty by myself which completely exhausts me. I was then told on Friday that our regular weekend night nurse will be quitting on Feb.22nd. There is NOTHING I hate more than finding, training, & trusting new nurses. It gives me anxiety & makes me feel sick to my stomach. I hate it. I broke down tonight when our Saturday night nurse called in 30 mins before her shift to inform us she was sick. We were all ready to leave for church. I am just SO sick of relying on other people just to live our life. I am such an independent person so to constantly have to have others help me is so hard for me. I don't think most people realize how much we can NOT do without help. I can not even shower without having someone here to watch Autumn. Yes, I could bring her, her suction machine, & pulse ox into the bathroom with me & then have to get out every time she beeps to suction her. It's possible but just not easy so I need someone to watch her while I can get ready. I have to have another adult in the car with me anytime I drive anywhere with Autumn in case she needs suctioning or pulls her trach out. I can't go outside to play with my boys whenever I want because I need someone to listen for Autumn. We use to be able to take Autumn outside or places with us but her anxiety is so bad now that we can't anymore. She turns blue from crying so it's not worth putting her & us through it all. I have to have someone here just to take & pick up my kids from school. Someone here to take my kids to any activities or birthday parties. My kids sacrifice lots because I can't take them. We miss church all the time from no nursing. I have to plan ahead for everything. If we can do something, it's usually either me going while James stays or vice versa. To actually go out to eat as a family means it's a special occasion. Weekdays are good because it's when I have the most help but not always available at the times I really need it. Weekends are the worst because no one wants to work weekends & I do not blame them & since James works weekends, we are always stuck at home. So, I allowed myself to cry & throw myself a short pity party. It sometimes just feels good to vent my frustrations but I always have to wipe my tears & get back to living this journey God has me on. I often repeat these verses in my mind to get me through those tough times: James 1:2 Consider it pure joy, my brothers and sisters,[a] whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything. 12 Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him. Although this journey is not an easy one, these verses remind me that life is not about me & my selfish desires. I may be weary & tired and feel like giving up some days but I must continue to persevere because this is the life God called for me to live & I am honored He found me worthy of such a task. If I persevere it just shows others that I serve such a loving & merciful God who always carries me through. One more thing, Autumn just started running fever with diarrhea. :(