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. :(

House of Sickies

It all started on December 19th when Gage came down the with a stomach virus. It then hit me, Madison, & James. We were thankful Noah & Autumn stayed well. We were all better by the New Year for about 3 days. I have been suffering from allergies for several months now. I NEVER had allergies until I moved to North Texas 3 years ago but the past several months they have gotten worse. I will spend an ENTIRE day sneezing & constant runny nose. By the end of the day, my nose will be sore & red. The next day I wake up feeling great & the 3rd day I deal with my nose peeling all day from Kleenex irritation! It's always the same routine & this has been going on about once a week for the past several months. I've tried all kinds of allergy meds. James keeps telling me to go see an allergist which I know I need to but who has time for that?! Noah was the next sick with strep & an ear infection. Madison started feeling bad last Friday but she never ran fever (which she rarely does) so we waited to go to the doctor until yesterday. Strep was negative but they said it's because the test only detects antibodies & the antibodies could not be showing anymore because we waited several days so they are sending it off to the lab to see if there is strep DNA detected. If so, they will let us know & get some medicine for her. As of now, she just has to let it run it's course. Autumn started getting sick late Saturday night/Sunday morning. She was running fever between 100-103 for 2 days, day 3 fever was between 99-100, & we thought maybe she was getting better. Day 4, fever still was around, she has a runny nose, & seems like an ear infection. I never take Autumn to the dr for sickness. We have everything she needs here & doctors like to overreact because of her trach so we always treat at home. I know her well so we only go in when there is nothing else we can do from home which so far thankfully we have never been admitted for sickness & have always been able to control everything at home. James called her dr yesterday to ask if there is anything more we could do & if we should bring her in or just let it run it's course. We suspect she has the flu but not certain. She's the only one who actually received the flu vaccine this year. We make sure she gets it every year because of her high risk of getting really sick fast. The doctor confirmed it would be too late to start tamiflu even if it were the flu & we are doing everything we need to be doing. Her lungs are our biggest concern & so far they had not been bad until last night. I went to bible study last night & when I got home about 8:45pm, Autumn was already asleep & was needing oxygen support with her vent. Last time she needed oxygen was December 2012 when she had RSV. So, last night I was up until 3:30am giving breathing treatments & watching her pulse ox machine & adjusting her vent settings & oxygen as needed. It's been 12 hours since she has ran fever so I pray we are towards the end. Today I told her nurse to get aggressive with breathing treatments so she has been getting Xopenex (to open airways) every 2 hours, Pulmicort (helps with inflammation) at night, Tobi(antibiotic) twice a day, & now we are adding Pulmozyme to help with secretion thickness. We have also been giving her ear drops. She has needed vent support for 4 days now. I hope these treatments help so we can keep treating at home. Please pray my girls feel better soon, everyone else stays well, & that I will soon make time for myself to go see an allergist. ;)

2013 in review

We had a great 2013 year. James & I took our first couple vacation away since March 2008 to California. It was nice to get away & not be mommy for a few days although I worried the entire time. We finally met our new son & he came home to live with us. We had birthdays & spent family time together. James moved to day shifts for the very first time our 10 years of marriage so we saw him a lot more & had to adjust having him in bed at night again! Our favorite part is we do not have to be quiet during the day. We finalized our adoption on November 27th.

Thankful Noah is now ours forever. We stayed home for the holidays, traveling is just too hard so I'd rather stay home & not be stressed with it all. We had a nice Christmas except for the stomach bug that Gage brought home from school on the 18th. It took out Gage, me, Madison, & then James. I am not sure how Noah & Autumn dodged that one. The in-laws & nephew came into town for New Year's so we just relaxed at home & no one made it to midnight...we celebrated at 10:30pm instead. It was 2014 somewhere. I always like to count up the number of dr. visits & therapy sessions at the end of every year & in 2013 we went to 31 dr. appts & 65 therapy sessions. These dr. appts are all routine appts too. It was great to have NO surgeries in 2013 except for Noah who had surgery in January but did not live with us yet. So far this year Madison turned 15 years old!

I can't believe it's been 15 years! She is one awesome teenager. I could write an entire paragraph explaining her personality but instead I will give one word examples. Beautiful, Strong-willed, intelligent, mature, anxious, artsy, loving, confusing, caring, fearful, sensitive, shy, funny, introvert, & the rest is too hard to explain in words. She has really taught me a lot about myself & parenting over the years. I've made most of my parenting mistakes with her yet God has created such a wonderful person despite my failures on parenting her. I've come to learn even though we have similar characteristics we are different in a lot of ways as well so these past 15 years have been about learning those differences & how to connect with her. It's been hard & I remember those younger years when I would lose my temper, yell at her, & just cry in frustration because I did not know how to deal with her. It still happens at times but not nearly as much. I've learned how to respect her more & shut my mouth more. ;) I worried how she would be as a teenager but she is the best teenager a parent could ask for. I just wish she would let me hug her more but I know my mom feels the same way. I don't like to give hugs unless it's my children & sometimes my husband. ;) In 2014, I plan to focus more on Autumn. 2012 & 2013 I was so focused on our adoption that I kind of just did the basics with Autumn & put off a lot because I just had too much to deal with. She had spina bifida clinic on Tuesday so we have set a plan in motion to figure that little girl out & see how we can get her to communicate with us. Her sb doctor is having us fill out a form about her, having her teacher fill out info about her, he is going to have a phone conversation with her school team, & already talked to us about how Autumn acts. We also plan to get another sleep study done this year & maybe even a detailed MRI to look at her brainstem. We have always been under the impression she would probably lose her trach at 5 or 6 years old but here we are still on the vent & so behind cognitively that we are wanting answers to why. She's got stuff in that brain of hers because watching her use an iPad is really amazing to see but she refuses to do more. She's just like the rest of the women in this house & as stubborn as a mule. :) Her anxiety is getting worse as well so we want to see how we can help her in that area. It's getting to where it is even affecting the entire family. We can no longer take her places (besides school & therapy) because she just turns blue & cries so this means we either have to have a nurse to watch her or either James or I have to stay with her while the rest of the family goes out. It's so bad that the other night we wanted to include her in family movie night & so we brought her into the living room, put in one of her videos that she likes, & she cried the entire time. She would close her eyes & refused to watch the show. We made her stay for the entire show (30 mins) & then took her back to her room. Christmas was a little better but she refused to watch what we were doing & to look at her gifts when we opened them for her. It's just hard because my kids sacrifice sports & doing things with friends because we just can not take them. It's a little better during the weekdays now with James' new day schedule but weekends the kids & I are still stuck at home most of the time. Autumn pretty much controls our life & we have to work everything around her schedule so we have to miss out on a lot & it's so hard to build friendships. My prayer this year is that we can figure out how we can help her & get her to communicate so we can try to be a little bit of a normal family again. I still feel overwhelmed most of the time but I have come to realize that's probably going to be the story of my life. There's so much ALWAYS going on in my head that I need to do or take care of & I tend to now just freeze & do nothing because I don't know where to start or feel like I am always going around the same circle over & over. Even though I feel this way, I really am so thankful for my life & feel God's blessings everyday. I would not trade my life (except for maybe a day to get some rest) with anyone. I'd get too bored if I did not have so much on my plate. God's got me so I've got this! Praying for another great year this year!