Saturday, September 28, 2013

Trusting God is Scary

I've had a few times where I have had to trust God with things. These times have never been easy. In fact, they have been some of the scariest times of my life.

The first time I put my total trust in God was when I was looking for a teaching job. My best friend at the time had just gotten a job teaching 4th grade at a school district in the desert. As I was headed off to my favorite moping spot, which happened to be the fast food restaurant where I worked at the time, I happened to catch just part of a Backstreet Boys song. The song was "Just Want You to Know," and the following lines jumped out at me:

All the doors are closing, I'm tryin' to move ahead
And deep inside I wish it's me instead

For some reason those words just resonated with me at that moment. Right then, I prayed to God for Him to use me where He needed me. The next day, I got a phone call from the principal at the same school my friend had gotten hired at. We talked and she offered me a fifth grade position. This was not an ideal position for me, and I spent many days and nights praying about it. Then I got put into a third grade position for the next school year. I stayed there for four years teaching third grade.

During that time, I reconnected with my husband and we got married. I became pregnant and gave birth to Little Man. During my maternity leave, I began praying about the difficult situation I was in at work. Things had gone from good to bad in a matter of years. I was looking for a way out. God provided that way. 

I wanted to move back home, back to the area where my family was living, But I couldn't get a teaching job in that area. This was in the depths of the recession so teaching jobs were slim. So I had to take a huge leap of faith. I left my job at the end of the school year and my little family moved into a house that was owned by my father-in-law. I didn't know where the money was going to come from so I had been saving for a while. I had managed to save about $10,000. That was able to sustain us for the time while Hubby looked for work.

During this time of uncertainty, the Lord gave me Scripture to know that everything would work out. The Scripture was:
“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them.Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life?

“And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin. Yet I tell you that not even Solomon in all his splendor was dressed like one of these. If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith? So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the pagans run after all these things, and your heavenly Father knows that you need them. But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
-- Matthew 6:25-34
I was hoping to be a stay-at-home-mom. I only lasted about a year or so. By then, I NEEDED to work. I was going stir crazy! So I got a job at a local library.

After a year, I got pregnant. 26 weeks later my water broke and almost 3 weeks after that, Princess was born. I had to entirely trust in God as I left her there. I had to trust the nurses and doctors to take care of her while I was at home. It was very difficult at times, but I knew God had her in His arms.

God granted me several songs to help me through the time with Princess. One of which was "Every Good Thing" by The Afters. The second of which, which has become our anthem and where the title of this blog came from is "We Won't Be Shaken" by Building 429.

Now, 6 months after Princess was born, I have to trust God yet again. I have taken the kids and left Hubby. I have no job and can't exactly get one because Princess is so special. Thankfully my mom has given us a place to stay while I get back on my feet and figure out what we are going to do. I had been debating this for a long time and it's only now that God has given me the strength and knowledge to know that I can do this. I can raise two kids by myself. I won't be alone. I'll probably have another post on this later as he has actually filled a dissolution of marriage (divorce).

But yet again, the Lord is with us on this. He has given me another song "Help Me Find It" by Sidewalk Prophets. In all this our faith remains unshakable. We will trust in God and He will lead us through it.

Tuesday, September 24, 2013

Scariest Thing so Far

I had Princess sleeping in her room this morning while I was out watching the news. Little Man went down there to check on her and he came back telling me that she had spit up. So I got up and went down there. I found her lying face up, staring at the ceiling, with spit up coming out of her mouth and nose. I wiped her face and she didn't move. So I scooped her up and tipped her over and started patting her on the back rather forcefully. After a few seconds of that, I turned her back over and wiped what was coming out of her mouth and nose again. It was then I noticed that her lips were starting to turn purple. So I flipped her back over and continued to beat on her back. I had to re-position her once and it was like moving a board. She was so stiff. After what seemed like an eternity, but was only about a minute, she started screaming. I turned her back over and looked at her. Her eyes weren't blank anymore. I laid her on the bed and grabbed the aspirator that's in her cup of hospital stuff I keep next to the changing station. I suctioned a little bit of milk out of her mouth, but she seemed to have either swallowed or spit what was left. I then scooped her up and held her as we walked around the house. At that point, I broke down in tears.

This was by far the scariest thing so far that has ever happened to me, even scarier than Little Man's febrile seizure when he was 18mo old. During it, I somehow remained super calm, I don't know how. Only when I heard her breathing in my ear did it all hit me.

This is one of the issues I have always had with the "back to sleep" or now the "safe sleep" campaign. What happens when you have a child who is prone to spitting up and they don't turn their head? Princess should be rolling over now, but she was born premature, so she's not. She'll do it when I work with her, but she has yet to do it on her own. So I still don't dare put her down on her tummy to sleep. She is usually very good about turning her head when she sleeps. I try to turn her head one way or the other, but she doesn't always stay that way. She's so wiggly now, I don't dare use an infant positioner, and besides, they've all be recalled.

I can't tell you how grateful I am to Little Man coming and telling me and just how thankful I am that the Lord is watching out for us. I don't know what I would have done had I lost her to something so simple as choking.

Friday, September 20, 2013

Life Happens

I have like 4 posts in draft right now in need of photos. I'm hoping to get to them soon. My life has kind of been turned upside down again. I promise more about it later when things are a little more stable. As it stands right now, things are a little rocky.

Princess is doing fine. We haven't had any major issues. Her meds are slowly being increased and tapered off to get her only on the meds that she needs to be on.

Little Man is enjoying playschool and one of those draft posts is about our week with letter H.

Just thought I'd post a bit. I'll hopefully get the pictures uploaded this week and get these posts actually posted and out of drafts!

Wednesday, September 11, 2013

Things I Hate about PHA2

This post is about the things I hate about Princess having PHA2. It does not mean I love her less in anyway. There are just things I'm learning about dealing with this disease that I really don't like right now.

1. Medication -- Okay, Princess will be on medication the rest of her life. Right now, I can't stand giving her medication. She's been on medication for three months now. It's taken me that long to learn how to give it to her without her spitting it up or choking on it. Granted, she still chokes on it from time to time and occasionally she does still spit it out, but we both are getting better at it. I know one day she will be on just ONE medication. I am looking forward to that day.

2. Labs -- Oh how I hate it when we have labs for Princess. No parent likes to see their child in pain, but this sometimes just drives me nuts. Because we are drawing for potassium, it HAS to be done from a vein. No finger or heel sticks for this little one. And then of course there is always the chance of hemolysis. There is potassium not only in the blood serum, but also in the blood cells. When they check potassium, they are actually checking serum potassium. If something happens to cause the blood cells to burst, more potassium is released into the serum and therefore the sample is contaminated. When that happens we have to go in and have it redone. I know this is going to be frequent right now as we adjust her medication with her growing. I also know that at some point, she'll become a pro with it.

3. Reading Labels -- I've taken all the really high potassium foods out of our diet. (I'll post more on this later.) Because of it, I am having to read labels. I'm not sure yet how low potassium a diet Princess is going to be on. We don't go back to the nephrologist until November. And I'm sure the amount of potassium is going to change as we introduce more and more foods and come off of formula.

I'm sure there's going to be more things I hate about this disease, or maybe that will be everything, I'm not sure yet. We're just getting started on this journey. But I can tell you right now, things are okay. I've got a few questions for the cardiologist when we go back next week and about a dozen questions for the nephrologist when we go in November.

I'm also learning about the kidneys right now. I've got to become the expert on Princess's disease and since it involves the kidneys, I need to know what they do, how they do it, what the test to see if they are functioning correctly, ect. It's actually pretty amazing. These little bean shaped things are really fascinating. It's made me realize just how complex the Lord has made us. He made us in His image and what an image that is!

Tuesday, September 3, 2013

4 Days? Really?

Has it really only been 4 days since we got the diagnosis of PHA2? It feels like a month! I feel like I have been doing more research NOW than I ever did in high school or college! You know you have a rare disease when (or the National Organization of Rare Diseases) doesn't even have a page for your disease!

I have found a Facebook group for PHA. (There is apparently a Facebook group for just about ANYTHING now!) Most of the parents have kids with PHA1. Depending upon if it is autosomal dominant (AD) or autosomal recessive (AR), the kid will either outgrow it (AD) or have to deal with the salt wasting episodes as an adult (AR). I've only found one other mom with a kid who has PHA2. I may have to go digging in the archives to check, but she may be the only one. PHA2 is more rare than than PHA1. PHA1 they say affects about 1 in 80,000 infants. PHA2 they don't have numbers on.

We saw the cardiologist today for the first time since the diagnosis. Apparently Princess is even more of an anomaly to have the Left Ventricular Hypertrophy (LVH) and the PHA2. Our plan of attack is to keep her on both medications right now, but we'll let her outgrow the current dose of the one beta-blocker she's on. The thiazide she'll be on for life and we'll be slowly increasing her dose as she grows. Eventually she'll just be on the thiazide. We're going to repeat the potassium on Friday. Oh joy! I HATE having to have blood drawn on this kid. Especially when it deals with potassium. We've had SO MANY issues with the sample hemolyzing and having to redraw it's driving me crazy! The only good thing that came out of today's visit was a normal blood pressure!!!!! Praise God! It does confirm that we are on the right track and she does have PHA2.

For me, it's beginning to make me wonder about things. Obviously knowing what I know now, her first round of acidosis at 3 weeks was the PHA2. That was the first indication of it. Her hypertension in the NICU was the next indication. There's no one to blame. It's a rare disease. We're probably the only case a lot of these docs are going to see EVER, until they develop a test for it and find out how prevalent it is.

My brain is just swimming right now. I don't know what to think. I don't know what to do. There's not many people I can talk to about her disorder and get answers.

Sunday, September 1, 2013

Our First FULL Week of Playschool

We technically started our "school year" three weeks ago, but because of the trip to Stanford, I decided to split our first week of playschool up. We started on the same Thursday that the school district in our town started and finished our week last week before we went to Stanford. This week, I decided to do a review week. After reading this article, I remembered my days of teaching. I hated how we never had enough review. We always had to sneak it in with the curriculum. It drove me nuts because the kids NEEDED review. I have been using This Reading Mama's Reading the Alphabet curriculum in pieces with Little Man. Well, she builds in review! When she does, she introduces a word family. This week, the word family is -at. It worked well since our last sight word was "at." The activity below was a math activity. Little man rolled the dice and then put the correct number of goldfish crackers on the paper until he covered all 20 squares. This worked well as it also allowed him to have a snack after he counted them all!

Another activity we did this week was building the sight words used in previous lessons. Our letter magnets come from the dollar store, so they are all capitals, but Little Man had fun.

Little Man was very excited to be able to read the decodable text for this week. It was "Scat Cat." He's read it a few times since we first read it on Thursday. I think he's so excited to read.

I'm actually thinking of messing with poor Little Man's mind and going out of alphabetical order as we continue our homeschooling. I want him to be able to actually learn to write. Well, I've found a couple different blogs about rearranging the alphabet and doing the straight lined letters first. This actually makes sense to me! Wish I would have found this out before I started homeschooling, but unfortunately Princess was still in the NICU and Little Man was still going to daycare and I was so overwhelmed. I hadn't assessed Little Man before I started (I know, bad teacher!), so I started WAY too easy for him!

We also used a lot from The Measured Mom this week. She has a way to teach the kids how to write using stations! Stations are fun at any age! So we focused on letters E and F this week. We had already previously covered them, so I figured it went along with our review idea. He wrote the letters in shaving cream, used straws and pencils and then used play-doh. He has recently learned to make snakes with the play-doh on his own so he figured it out pretty quickly as a way to make the letters.

I didn't have any glass squares like I had seen, but I had flattened marbles, so I let him use those. He did remarkably well. He then got to use stickers to make the letters. He did a pretty good job on it.

We did the letter sheets as well. He liked the first two, but the last one was just a little too much for his attention span. He also did the -at Read 'n' Stick mat and the -at Word House found on The Measured Mom. (Specific links at the bottom.)

As our more advanced math activity this week, we did Roll Dice & Park Cars. I printed the sheet and let him pick the cars he used. After about the first two rolls, I became annoyed with the dice going all over the floor. I remembered a trick I had seen on Pinterest about putting dice in plastic bowls with lids. So that's what I did.

The only problem was I had to take the dice out of the bowl for him to physically count the dots. I don't think he realized he was adding. He recognizes his numbers from 1-20, so I thought this was a good next step. The only difficult thing was that we had to only use one die to get the number 1, but Little Man did fine with it.

Things went well for the week. Then as I was washing bottles one day, Little Man got his step stool and climbed up to "help." He's actually helped me wash the bottles before, but this time, he just wanted to play. At first I was annoyed. It was keeping me from finishing the bottles for the day. But then I realized that he was doing something he needed to do. He needed the sensory time. We have sensory bins with beans and marbles, but I haven't really used water during our playschool time. I always felt it was too messy and he always needed to change clothes and I would be stuck mopping up a sopping floor. Him playing in the bottle basin actually worked out. He didn't get totally wet. I didn't have to mop up the floor.

You may have noticed that Little Man was working at a table. This is new for us. My mom bought him a picnic table so he could do his schoolwork at. He loves it! I purposefully held off doing playschool the day my step-dad was bringing it over because I knew he would want to use it. He sits at it and reads his playschool books. And the first time he played with play-doh on it, he was actually upset when there was play-doh pieces all over it after he cleaned up! It was cute.

I'm still up in the air about this coming week and what we are going to do playschool-wise. It has the holiday Monday and then the next two days we have appointments during our playschool time. So I'm still thinking about it.

Specific Links
Stations at the Kitchen Table (Includes the worksheets Little Man did)
Read 'n' Stick Mats
Word Family Houses Short /a/
Preschool Math Ideas Using Toy Cars (Includes the Roll Dice & Park Cars)

Related Posts Plugin for WordPress, Blogger...