Tuesday, June 14, 2016

How is it the middle of June??!

So baseball season continues.  I've been trying to get  out of the house more and more lately, but the past week and half CJ got a mild case of Hand, Foot, and Mouth Disease.  Of course, Bubby got it immediately after but his case was severe.  He was covered in blisters from head to toe--the worst on and around his bottom and hands.  And mouth.  And feet.  Ok, it was bad all over.  Then he started to get pink eye.  I tried treating it with breastmilk--which has definitely worked in the past (don't think I'm a hippie).  But when it wasn't getting any better by the next day and was worse I knew I had to take him in.  As usual it was a Sunday, so we went to the Urgent Care and saw the same doctor as we did in February.  I really liked him then so I was happy we got the same person.  He gave me the news that he had the HFMD, pink eye in both eyes, and a double ear infection.  Awesome.  :(  Now it's been 10 days and Bubby has a fever again.  We went to his usual doctor's office, but his regular doctor is on maternity leave so we saw another new doctor who has no hair.  (That's important because I drew a picture of the doctor beforehand for CJ ,and he had hair in it.)  He said he still has the ear infection, and by that point his temp was 102.8.  Bubby has also lost some weight which wasn't suprising because he wasn't eating well from the HFMD blisters in his mouth, and now he's been spitting up/puking a little from congestion.  I just want my baby to feel better. 

We haven't been to church in over 2 weeks because of the sickness.  I thought hard about going Sunday, but they say the HFMD can still be shed for at least 2 weeks after in their "diaper" and since they change diapers in the nursery, I didn't want to risk anyone else getting it from us.  Just didn't seem worth it.  We watched church online instead which was fun for CJ to pretend to play guitar, drums, and piano while we (I) sang.

CJ graduated from speech therapy today!  His speech therapist was really excited for him since most kids who enter the program don't get out before they turn 3.  We really bonded with her, so I'm nervous that he'll be upset when he doesn't see her anymore.  We have seen her out when we went somewhere once before so hopefully we'll bump into her again.  We gave her orange marigolds planted in a blue pot since she's also an Illini grad as a thank you present.  I was really worried I'd kill them before we could give them to her.  He's speaking in sentences now, has more clear words, and is 100% caught up to other kids his age which is great.  He loves to learn which helped a lot.

One thing we've been trying to decide is what we want to do as far as preschool goes.  A lot of kids start at 3 and get 2 years of preschool before they enter kindergarten, but since his birthday is Sept 19 he'd get 3 years before kindergarten.  I really was leaning towards sending him this fall just to get a little time away and to give him some socialization, but Hubby didn't really think we should send him and he had very convincing reasoning.  So we decided that we wouldn't send him and we'll reevaluate next year.  Instead, I am going to attempt to join a BSF group that's about 45 minutes east of us.  They have (I'm told) a great preschool program for kids his age while I'd get time away studying the bible with like-minded people.  When we're better, we're going to start going to church on Wednesdays which will give him even more social time while learning about God with like-minded people in addition to Sunday school.  Then if we're really feeling up to it, we'll go to story time at the library maybe a couple times a month.  That part we'll definitely have to go by how it's going because the past few times we've gone to toddler time, he has had difficulty controlling his emotions and behaviors in that setting.  I'm also going to be more intentional about teaching him things.  He already knows his letters and can usually count to ten and recognize those numbers.  I found an online play and Bible based curriculum for three year olds called ABC Jesus Loves Me (and it's all free unless you want to buy their books).  Most of it is just playing games, reading books, singing songs, and doing crafts to learn the things three year olds should be learning.  I mostly like it because I have know idea what 3 year olds should be learning, haha!  It also gives me flexibility to pick and choose what we do if something isn't working, if he's having trouble with something, or if we're short or long on time.  They also have age appropriate curriculums for all kids 1-5.  I haven't looked at the others, but I think the one year old curriculum is teaching them a new sign each week, singing, reading the Bible and other books, and praying for their character.

I was looking at my projects that I was doing before, and I finished the barn quilt.  I made one for my mom.  I also have gotten as far as staining the table and one of the two chairs that are outside.  It's hard to get stuff done when you've got little kids.  They weren't joking when they said that kids were hard work. 

I am enjoying getting to chat with my 84 year old neighbor Brad every day now that it's warmer out.  Yesterday, I was in conversation with him when Channer walked up and asked me for a hug. Brad said, "Oh yeah, get a hug from Mom. That's the best thing. You'll always want that no matter how old you are."  His voice trailed off at the end, and you knew he was thinking about how much he missed his mom and wife.  Thankfully they were Christians as is he so he has the joy of knowing he will see them again.   Having a neighbor like him definitely gives me good perspective on life.  I'm on one end of it and he's on the other.  He and my mailman are always telling me how quickly they grow up and how fast it goes, and I'm realizing how right they are.  Bubby is turing 1 in just a couple weeks and CJ is already getting close to being 3, and time just keeps getting shorter.

Saturday, April 23, 2016

Chaos of the Season

It's been a while since I've posted anything.  That pretty much should explain what I've been doing.  Chasing kids.  Hubby's baseball season has picked up so I feel him next to me in the middle of the night when he gets home and then I see him in the morning before he goes back to work.  In a typical day during the season when he has a game (which has been every day for the past 3 weeks except I think 3 days), he will wake up with the rest of us at 7 (or 6 lately).  CJ will cry and whine for a good amount of time.  Then he'll leave by 9 at the latest and get home around 1 a.m., sometimes one or two hours later and other times an hour earlier.  This stadium does the local college's home baseball games in addition to their minor league team so he is doubly busy.

In my day, I'll wake up, nurse the baby, make coffee, try to calm CJ down, maybe try to do my hair or make up before Hubby leaves, eat and/or feed breakfast to myself and littles, try to act really excited about Hubby going to work, do laundry, keep Bubby from dying, keepy CJ from dying, keep CJ from killing Bubby, keep Lyna from killing CJ, keep CJ from killing Lyna, try to survive, drink cold coffee, more laundry, change diapers, put Bubby down for a nap, go outside with CJ, whack dandelions with CJ's garden hoe, pull weeds, plant grass, water dirt, wish grass would grow, wonder how dandelions grow so easily, ok, I'm going to stop there.  We'll go for a walk usually if it's nice and maybe go to a park.  Tuesdays is speech therapy.  Wednesdays are library days where we'll go to Toddler Time if I'm feeling really brave (usually ends up being every other week), or we'll just go to get books and a movie.  I'll try to go to a store at some point.  CJ and Bubby will nap at the same time for about 15 minutes every few days in which I end up sitting and saying, "Woah.  What. Just. Happened."  Then one of them wakes up.  At this point, CJ is sleeping longer than Bubby in terms of hours, but Bubby takes 2 naps instead of one like CJ.  CJ was waking at 6 a.m. for several days in a row because it's so bright out in the mornings so I ended up draping a blanket behind their curtain to block the light which seems to have gotten him closer to waking at 7 thankfully!  At some point during my day, I whip out my phone to read in Proverbs and get my Jesus on.  It hasn't been going so well though because--Children.  If I try reading after they go to bed, I fall asleep. [honesty.]  My days are crazy busy, crazy fun., and crazy hard.  After the boys go to bed around 8 p.m., I facebook/Netflix/chill.  I get really anxious then because I don't like being alone that late at night.

Projects that I have going on:  Sanding and staining our outdoor bistro set (started), painting a sign (not started), spray painting a brass picture frame (done), organizing boy clothes (ongoing).  [Pause here:  Bubby just started creeping along the couch while I'm typing this.  Ahh!!!]

I hurt my right shoulder 2 weeks ago.  I should say, the boys hurt my shoulder 2 weeks ago.  I was really hoping it would start getting better on its own, but it's not.

Ok, Bubby is getting into to much for me to finish this, so I'm just going to leave it at that.  Life is busy. Life is crazy.  Life is so good.

Tuesday, March 01, 2016

Why I've gone and joined the crazy wagon.

This is an addition to my post earlier about our diagnosis with Fabry.

Knowing what I know about our genetics and family history--Fabry disease, heart disease, stroke, cancer, etc--I have been inspired to make changes. You may have seen me post things about some of it and thought, "Alright, Mrs. Neuby has joined the crazy green hippie wagon."  And maybe I have. But I have my reasoning.

We all know we can eat healthier, exercise more and visit the doctor regularly to help prevent disease. So I have been trying to cook healthier (brown rice instead of white, whole grain bread instead of white, olive oil instead of vegetable, etc). However, we don't always think about the everyday products we use. So I have started eliminating toxins from my home one by one. I found a few different statistics on how many people get cancer, but almost 40% of people was the most common number I found. That means 2 out of 5 people will get cancer in their life. In my little family of four, at least one if not two of us could end up with cancer based off that fact. And that is scary.

I know that God can help me through any battle or disease that we may face which gives me great hope and fees me from being paralyzed by great of the unknown, but I also know that he wants us to take care of the bodies and environment that he is allowing us to inhabit. By eliminating toxins in cleaning products, makeup, the vitamins I take, the air fresheners that I use, the things we use to clean out bodies, I am doing just one more thing to help protect us. My friend Michelle days it is like "putting on a seatbelt" as a form of protection. You don't know if you will get cancer or anything like that, but you can make the choice to put that seatbelt on every day.

I am loving the ability to share what I have learned with others. My hope is that you understand that I am not just jumping on a bandwagon and that I have reasoning to back up my craziness. My other hope is that you will also see the need. I want us to all live long and healthy in the bodies we have been given until the good Lord calls us home.

Monday, February 29, 2016

I Am Rare Disease Day

Welcome to my blog if you are a first time visitor. I don't normally advertise my posts on Facebook or anything, but this post is important to me. If you look back at old posts, you will find mostly my day to day life, random DIY projects, a little about what is important to me, and probably a bunch of typos and poor editing since I rarely have time to write, let alone go back and proofread.

In July, I got a phone call from Bubby's pediatrician that he had one of the tests from his newborn screen come back abnormal. We did a retest, another test to confirm, and some more tests to check his levels on certain things. Eventually, I got a call confirming that my newborn has Fabry Disease and our genetic variant is A143T. I say "our" because shortly after, CJ and I (Mrs. Neuby) were also diagnosed with Fabry (pronounced fah-bray).

Fabry disease is an x-linked genetic condition that can eventually lead to cardiac and kidney problems along with neuropathy and a whole host of other symptoms early in life due to a decrease in or complete lack of a certain enzyme. It is a disease that kills people early if not treated. There is a lot of good news though:

  • We know that we have it. 
  • There is a treatment. (Though it would involve going to a hospital, being hooked to an IV and being given an infusion for several hours possibly weekly, and the side effects aren't great.)
  • We may have a form that is later onset. I have gone 26 years without treatment, but the key test results say that my kidneys are fine. (It affects males more seriously than females, but females are not just carriers.)

I wish, pray, and long for the day when more is known about our form of Fabry.  They have started testing newborns in Missouri for a couple years and in Illinois for about the extent of Bubby's lifespan. By testing newborns, they can go back and test the parents and grandparents of diagnosed newborns and learn more about the specific variants based off their history. For example, Bubby and CJ are diagnosed. They can look at my history and find that I have some already diagnosed cardiac issues as well as Raynaud's disease which are both associated with Fabry. Then if I can convince my parents to get tested, they might realize that my dad's stroke, heart disease, ringing in his ears, carpal tunnel, and other sytreatmentse all caused by Fabry disease. Or if my mom were the one to pass on the Fabry Gene, then we might find out that it doesn't appear to have major issues at all.  By using that information, geneticists are able to decide when or if treatment will be necessary for my boys, my parents, and myself. Then we could also better determine if siblings, cousins, aunts, and uncles need tested. Unfortunately, I still haven't been able to convince my parents to get tested so we really haven't gotten anywhere. My dad did ask his cardiologist about getting tested, but despite the obvious facts and diagnosed genetic offspring saying he could be a carrier, he said, "I don't think you have that."

The problem is that Fabry disease is a RARE disease. CJ and Bubby are the only patients ever to have it in our pediatricians office. I am the only patient my doctor has seen with it. They both had to go look up what Fabry disease is because it is just one page on their medical school textbooks. One question on the boards. Most likely my dad's cardiologist has never had a patient with it (that he knows of). As a family with Fabry, we will have to advocate for ourselves.

My hope is that they will one day find a better treatment, but more importantly, I hope they find out about A143T before it is too late. From talking with those in the Fabry community, I have learned that this disease can progress to make life miserable for people. There are Fabry patients all over waiting for kidney transplants. There are patients dying because despite treatments and medical advances, it just wasn't enough. I have also learned that A143T Fabry seems like the better variant to be diagnosed with because it might end up being nothing at all which is the hope that I will hang on to.

At this point our future just involves yearly testing and visits to the geneticist.  The only thing we can do is try out best to minimize other risk factors be eating healthy, exercising, and not taking up smoking.  Knowing that we are fighting an uphill battle with our health is one of the reasons why I was inspired to stay making other changes in what we are using in our house and on our bodies. Hopefully, I will have time to write a post about that before the end of the day. Be on the lookout for part two!

Monday, January 04, 2016

Happiest of New Years! 2016! #thisyeariwill


Happy New Year everyone!  I am back from visiting my parents.  We had a pretty good visit with them--I just wish I could spend a Christmas with my middle sister again.  It's been since before I got married that she was home at Christmas time.  Now that I have kids, I don't blame her--plus Michigan weather has been awful every year except for this year so I understand why she doesn't want to travel then.

It really hit me this visit for some reason that my time with my sisters is really limited now.  I get to see my oldest sister once every month or two, and my middle sister once or twice a year if I'm lucky.  Growing up, I NEVER thought about how we wouldn't be together every day, all day forever.  We can only hope that we really will get to be old ladies sitting on a porch swing together every day down the road.  I suppose I shouldn't leave out the fact that I have eternity in heaven with them, but since I don't know much about what that will be like and now is all I have presently, I just feel like every moment I get with my sisters is important.  My middle sis is going through a lot right now--moving and looking for a new church to serve in, so please keep her in your prayers.  (And secretly pray that she finds a church where I am and can move into my landlord's other vacant house a couple doors down so we can see each other more!)

I've been thinking about new year's resolutions and normally I like to be really specific, but this year I'm having trouble with some of mine.  Read my Bible every day is one I've had since I was probably 12--I did a lot better last year, but there is room for improvement.  Based off how far I got in my devotional book that I was going through, I read the bible on average 2 out of 3 days last year.  That's a lot better than I have ever done, but I can do so much better.  I pray every day all day, listen to Christian music, go to church almost every Sunday, watch inspiring sermons online, tell my kids about Jesus, read Christian books, and have lots of Christian pages in my newsfeed on facebook--but reading the Bible is the foundation for everything and while all of that other stuff isn't bad in and of itself, Satan really knows how to keep me from getting in the word so I'll make it my goal once more to dig into my Bible daily.

I told Hubby that I want to make it a priority to go out once a month for a date.  All my newlywed friends without kids go out once a week--but that's pretty much impossible for us.  I want to make our relationship more important than our kids.  That sounds bad, but if we aren't in a good place consistently for them, then we risk scarring them for the rest of their lives. Like, for real.  We both have also talked about how we want our evenings after we put the boys to bed to look like.  I'd like to play games once a week, and he'd like less screen time watching movies/shows.

Another goal I have relates back to my last post about my siblings.  I want to do so much better at loving my children and cherishing every moment with them.  It isn't specific at all, but I know I can do so much better.  When they are being disciplined (or whatever P.C. term you use), I want them to know in the end that I am doing it out of love and not anger.  This week is going to be HUGE challenge with that because Hubby is on a work trip so CJ is a complete puddle every other hour over "daddy" being gone.  Hopefully, he will feel better as the week goes on.

Finally, I am starting a new business that I am so excited about!  So I have a goal in mind with where I want to be by the end of the year with it, and I am open to adjusting my goal once I see how it is working from home.  You'll probably be hearing from me so I can tell you more about it, but after thoughtful prayer, I truly feel that this is where God has been leading me for some time.  Six years ago at the Urbana09 conference, God laid a burden on my heart to be caring for His creation.  I have found a company that aligns with everything that God has been showing me over the past 6 years, and I cannot tell you how exciting it is to find the perfect match after so long!  Since I graduated college, I've pretty much been saying to myself, "Ok, God gave me this passion, but how am I supposed to do anything with it?"  I couldn't find a job that matched where I felt him leading, I had a dog that kept me from going out (thank the Lord we solved that problem!!), then I had kids and couldn't/didn't want to work outside the home.  It's like finding your favorite shirt--the only shirt that fits you just right and makes you feel like Wonder Woman--after looking for it for 6 years (and a lifetime)!  I realize that some people think that the whole "green" or "save the trees" movement is silly, but I believe that it is in alignment with God's will to care for our bodies and our environment:  "The earth is the Lord's and everything in it, the world, and all who live in it." Psalm 24:1  "For the Lord is the great God, the great King above all gods.  In his hand are the depths of the earth, and the mountain peaks belong to him. The sea is his, for he made it, and his hands formed the dry land." Psalm 95:3-5 "Do you not know that your bodies are temples of the Holy Spirit, who is in you, whom you have received from God? You are not your own; you were bought at a price. Therefore honor God with your bodies." 1 Cor 6:19-20.  No individual can fix all of the problems with the chemicals we are putting into our bodies and into the environment, but it does start with one person and each one person doing their part adds up to a huge difference. That is a post on in it's own that I should write, but just a smidgen of what I see God saying on it.

So Happy New Year friends & family!  What resolutions are you making this year?