Wednesday, April 30, 2014

Join me...Week 1

Join me....For a cup of coffee, tea, hot chocolate, or what ever you like. Sit back, relax and join me every Sunday as I look deeper into God's plan for us.

After this last weeks events with our son, I need this now more then ever! This last Friday we were forced to pause everything in our life and get re-centered on what is really important. It has been a tough week trying to get back on track and our son still not feeling well so I hope this helps me and you get through this crazy thing we call...life.

God has worked so many miracles in my life that I can not deny Him. I love Him and want to know Him on a deeper level. Right now, in my life, I kind of feel like one of the first followers of Jesus. Just blindly following Him, trusting Him with my life, and watching the miracles happen. But like them, I too, stumble. I don't ALWAYS trust. I don't ALWAYS give everything. I don't ALWAYS serve others. I question Him. I wonder why he has done bad things to me and my family. I can not see the reason behind situations even though I so badly want to.
This is why I want to know Him on a deeper level. There are so many people in my life that already do and I want to be more like them. I want to read the Bible, and know what it is saying and what it means. My knowledge and understanding of the book are so basic that I find myself reading children bible stories to my kids and liking them better. Easy to read, short stories, with pictures! I laugh at myself because this is what I like, but I know I want more. I want to go deeper.
That's why I have decided to read a verse or story from an adult version of the Bible and share my thoughts with you. I hope you come along on this journey with me. Get to know Him on a deeper level with me. (Or help me by sharing your thoughts) I really would like this to be interactive so please share your thoughts, favorite stories or verses, and what is in your mug while you read.
Join me next week as we dive into our first verse.

Monday, April 28, 2014

I trust God except when...

I trust God except when....? Have you ever been able to answer that question? If you can then you have questioned your faith. Something shook you to the core and made you question EVERYTHING.

I will be the first one to say that we are always exactly where we need to be, when we need to be there. After the crisis is over I can find the good in it all. I can recall moments where I know, without a doubt, that God was in control and that if things had happened any other way it could have turned out much worse. Even after the events of Friday I can say that I am thankful.

If Noelie had his seizure at midnight I might not have caught it in time to get him help. The doctor said that having a seizure means that there is brain activity. Since we don't really know how much brain activity he has, more is better. This means he may have more potential then we ever thought. I am thankful for these things.

But here is my problem...When I think about the future, and not catching a seizure in time, and possibly not having him in our lives...I break down. I can't handle the thought. I already feel guilty. This thought shakes me to my core and makes me question things. Do I REALLY trust God with everything in my life? Or can I just see the good after the crisis is over? If I loose Noelie, when exactly will the crisis be over? I believe that losing a child is one of the hardest things anyone can go through. How will I be able to move on?

In the blink of an eye our lives changed forever, again. Since we have gotten home I have spent a lot of time cuddling, holding, and staring at him. I don't want to forget this moment because I don't know how many moments I have with him. Even as I write this I realize that no one knows how many moments we have. It just seems like our time may be shorter then normal. I pray that we never have to deal with this, and that the thoughts are worse than the reality. I pray that we will never know the heartache of burying a child. I pray for the strength to really trust God with my worries. 

Have you ever been able to answer that question? What shook you to the core and made you question things? How did you get through it? How long did it take?
 

Sunday, April 27, 2014

Home

 

We are home!!! After the events on Friday that forced us to take a pause from our life we are home! It feels good. And we are tired. Our other son was with Grandma & pa's house for the weekend and is now with friends for the night. I just don't think I could handle both boys tonight.

Noelie had a low grade temp all night last night and early this morning it spiked to 101. He doesn't seem to have an ear infection and his labs all came back good so the Doctors think he my have picked up a virus. There is nothing that they can do for it. So we are riding it out at home. I hope it doesn't cause any more problems.

As good as it feels to be home I am really scared of this new reality we are faced with. I spent most of the afternoon unpacking our stuff and picking up the house after I tore it apart trying to find things we needed on Friday. One of the first things I did was move the video camera I have to check on him at night into a position so I can see his whole body.

Questions just keep running through my head. What if I don't catch it? What if I am home alone with the boys? How am I going to keep from turning into a crying, blubbering mess? I need to make a plan, but that is for a different day. We have medication that he is on everyday and a different medication to give him just in case he starts to have another seizure. I will NEVER be leaving home without that one!

If anyone of you out there has any advice for me...please I could use it. I am seriously considering getting a dog that senses seizures, but those are VERY expensive and have certain requirements that I don't think we will meet right now. Please keep us in your thoughts as in the coming days we get used to our new reality.  

Saturday, April 26, 2014

Sometimes life forces us to pause

As some of you already know, Friday April 25th, was a very rough day for us. At 5am I looked on the video monitor set up for me to check on Noelie. He was awake but fine.[I should mention that he was fine the day before. No temp, not irritable, nothing unusual] I fell back asleep at woke again at 7:30. I went into his room and noticed his right arm twitching and he wouldn't look at me when I said good morning to him. Something was wrong. I called Noel (dad) to come look.

We both have experience with seizures and determined that was what was going on. We also know that most seizures don't last very long and he may come out of it soon. We waited, what seemed to be, 10 minutes and finally called 911. We have an O2 monitor and dad thought it would be a good idea to put it on him but we hadn't needed for so long I tore the house apart looking for the sticky part that attaches to him. [at least someone wasn't crying hysterically] Noel and Sam stayed back and came up later.

We live about 1 mile from the fire department so I heard to sirens start to blare. Then I heard them stop...at our house. [I am glad they were there but it was very scary knowing that those sirens were for us] They picked up Noelie, I put on some jeans and socks and we were off, in what seemed like the longest 15 minute, ambulance ride of my life. The paramedics were great! Coming from a small town I knew both of the ones in the back with us. They asked so many questions I felt like I was getting a pop quiz. I could barely concentrate. I could barely breathe. 

We finally got to the ER. Noelie was getting worse. They were ready for us. They asked more questions (continue the pop quiz) and gave him some medicine up his butt. That didn't help. They put in an IV and gave more medicine. Finally...my baby stopped jerking. They said he probably was still having a seizure because he was still unable to make eye contact. From the time I found him to the time he stopped jerking was almost an hour.

They admitted us to the ICU and ordered a CT scan to see if maybe the shunt was not functioning and causing pressure. They also ordered an EEG to hopefully give more answers into the why. I finally got time to catch my breath. He was stable. Noel and Sam showed up. They took Noelie away to his CT scan.

They came back and the results of the CT scan showed that the shunt was working fine. He had no temp. His blood sugars were within normal range. They hooked him up to the EEG and had a video recording him all night.
Hooked up to the EEG and resting

He slept well and had no other seizures during the night. They came in and disconnected the EEG on Saturday around 9:30am. He was acting like his old self again and I finally got some smiles out of him.
Saturday morning
Oh that smile...that makes all this worth it. We talked to the neurologist this afternoon. She said he had a Tonic-clonic seizure that was mainly on the left side of his brain, caused from the Hydrocephalus. Because this was his first one and it lasted so long, he will probably always have long ones now. This time doesn't seem to have caused any major damage because he is acting exactly like his old self. We are being sent home on medicine and will have another kind to give him right away and hopefully stop it.

Friday was a bad day. One of the worse. We were always told that this might happen, but he had been doing so good. We were getting into a routine with him and Sam. We were making plans. We were enjoying all the smiles. Then suddenly it all stopped. 

As I look back and am not in panic mode I can see some good in the situation. Noel had enough sense to put on the o2 monitor. It was Friday and my parents had the weekend off so they could watch Sam while I spent the weekend in the hospital with Noelie. It is not the shunt malfunctioning. The neurologist that normally follows him, and knows his history, was working that morning. Our priest was called and always makes his hospital rounds on Fridays so he was able to be there. The nurse that follows us in the clinic (helps clarify things for us and coordinate appointments) just happened to look at the hospital census sheet, saw our name, and was able to visit to see if she could help in anyway. I am able to find some humor and joke around with our long lost "friends" in the hospital. [I have decided that I no longer like always having to come and see them. They never visit us. We never meet for coffee. They never set up a play date. This one sided relationship just isn't working for me any more. If they don't start making some effort to visit us then we can no longer be friends. :)] 
Brother Sam came for a visit

All joking aside, I pray that we can control this with meds. I expressed how scared I was to bring him home because, even though we have video on him at night, he was quite. What if I don't catch it? What if he has one for longer then an hour? Let's just say that the answer I got didn't make me feel better. When I think about that possibility, I start to tear up. I am trying to not let my mind wander to that dark place. That place of life without our Noelie. This is our new reality. I am told with most special needs kiddos that this is normal. They make 5 steps forward and 2 backward. We just have to keep climbing.

 These events like this that keep popping into our life cause us to pause and reflect. [kind of like a funeral] They force us to realize what is really important. They force us, as husband and wife, to work together in a very stressful situation. (I feel so lucky to have Noel as my partner in life. We work very well together and both bring out our strengths in these situations) These situations force us to be flexible. These situations make us cancel all our plans and remember that we are not in charge. No matter how much we plan and think we got it figured out, we don't. We really don't. 

For now, Noelie is napping. He needs a bit of Tylenol for pain and now his seizure medicine to add to his other couple meds, but he is doing well. He is such a trooper. I am getting smiles and giggles today. They want to keep us for one more night and should be going home on Sunday. Thank you for all your prayers and well wishes. Thank you to those that offered to help in anyway. Thank you to those that came to visit. Thank you to the EMT's that came to our house yesterday. Thanks to our "friends" in the hospital. We love you all and are grateful for every one of you. 

If you want to know more about tonic-clonic seizures you can click on the tab at the top of the "home" page or click on the link here. This will take you to the page also.

Wednesday, April 23, 2014

Farming

Helping water the cow

Noelie needs a push
We are dairy farmers. This last year was really hard for farmers everywhere. This winter didn't make it any better. We only have a few cows that need to be taken care of so I pack the boys up and we head outside.

It feels soooo good to be outside after this bitterly cold, long winter that doesn't want to let go. (FYI they are calling for snow in 2 days!) Being outside is really good for the boys too. I have also tried to get out for a walk every day that it is nice out in an attempt to loss some of this baby weight. The fresh air puts them right to sleep almost as soon as we get back inside.

This was Sam's first time seeing a cow! She even mooed at him. He just seemed to study it, like he does with everything these days. This was also was the first time I took Noelie out in his Kid cart. Usually I put them both in our double stroller but he was eating, and the mud season is almost over.

I am so glad the temperature is warming up, the snow is melting, and we can finally start to come out of hibernation!

Has it been a long winter for you too? What are you doing now that you can get outside?  

Tuesday, April 22, 2014

This blanket

Noelie loves this blanket! He loves to stick his fingers in the holes.

This blanket was made by a friend. She prayed for us the whole time she was working on it.

She sent it to us just before he was born. Even though he was 5 weeks early, something inside her just felt we would need it earlier than expected. 

We used it to keep his eyes shielded from the lights of the NICU. (They put blankets over all the incubators) We used it to keep him warm when they moved him to an open air bed.

It has gone with to every hospital stay. It jas been with during every sleep study.

He loves this blanket. It wraps him in warmth and prayers every night now that we are home more. We are so greatful to our friend that made it. We say a prayer for her every night when we go to bed.

I wish everyone had a blanket like this.

Monday, April 21, 2014

What I have been up to during Lent

On March 4th I officially signed off of Facebook! I won't lie...it was hard, but I spent most of my time learning about blogging, and with my family.

Here are some highlights:
  • We took 2 Steps forward, 1 Step back when we found out that some old x-rays showed that Noelie might need hip surgery.
  • The hubby and I got to go on a date night and sent the kids to the Grandparents for the night.
  • We got the results of the CT scan and they were better then expected
  • Samuel turned 3 months old
  • I had submitted our story to the Global Genes website and they published our story
  • We enjoyed the first day of spring by going swimming with friends
  • Noelie turned 20 months old
  • Noelie got another haircut
  • Noelie had a doctor appointment and got thumb braces
  • We got Nolie a stander on loan till we can get a nicer, newer one for ourselves. This should help ward off surgery for awhile.
  • I did a series of posts that I call the Reflection series to (hopefully) encourage all parents raising special needs kids.
  • I made a You Tube channel and an Instagram page (follow me there too)
  • Samuel turned 4 months old
  • I also made a new Facebook page where I will be updating and sharing posts from this blog among other things. (like that page to get all the latest news)
  • and the latest development that I am really excited about, we got wooden blocks and we love them! 
Well that's it. Click on the blue underlined words to go to those posts and find out the whole story. It has been long and a lot has happened.

What have you been up to? I have missed all of my Facebook friends and hope your Lenten season went well. I can't wait to hear from you!


4 months old


It's a bit late but Sam is 4 months old already! He is growing so fast. He is standing on his own and I think he will skip the crawling stage and go right to walking! :)

Blocks



We got blocks from Aunt Becky and we love them. I stack them, Noelie knocks them down, and he even picked one up!!! This is HUGE! He has been able to pick up smaller things for awhile now but a block is bigger and awkward, especially when you don't have good use of your thumbs. I am so excited for this latest development. He still would rather play with toys that light up or make noise but I insist that we play with these for a bit every day. :)

Sunday, April 20, 2014

New Facebook page

I just made a new Facebook page so I can share more of our journey with you! Check it out today. :)

He has risen!

 
HE HAS RISEN!!!! It is Easter. I love this day almost more then Christmas. He suffered a terrible death to save me from my sins and He has concord death. HE HAS RISEN. My sins are forgiven! Your sins are forgiven! Doesn't that make you want to jump up and down with excitement? 

As the angel in Matthew 28 says, "do not be afraid", we no longer have a reason to fear death. Jesus has overcome death, and if we follow him and ask for forgiveness from our sins, we too will overcome death.

I can't seem to find words that express my excitement enough. I hope you know this kind of love. I hope you know in the depths of your soul that He did this for you and you are forgiven.

Friday, April 18, 2014

Good Friday

Today my heart hurts. Today Jesus died on the cross. It has been quite a day. I spent most of the day getting my car fixed from a mishap earlier this week. But as I sit at home tonight I can't help but reflect on what happened so long ago.

I read John 19 and want to cry. This passage in the bible is not nearly as graphic as in the movie, The Passion of Christ, that came out a few years ago. One has to imagine what it would have been like, unless you have seen the movie. This part is so hard for me to watch. The whipping, the crown of thorns being placed on his head, the walk up the hill while carrying the heavy cross, the nails being driven into his hands and feet, being hoisted up on the cross, then hanging there all day. What a terrible way to go.

And to think that all of that was for me...and for you. To take away our sins. When this was done, we were not even born yet. But God knows us, and he knows that we are not perfect, and he wants us to know that he forgives us, if we want to be forgiven.

To want to be forgiven means that you want to be more like Jesus. To follow his example. To love one another. To forgive. To humble yourselves and serve others. To.....(what would you put here?)

I can't wait for Easter Sunday when my heart can rejoice because Jesus has risen. I look forward to that day. A day of celebration, and time spent with my family.

How have you remembered today? My children are too little to understand but if you have kids old enough, how did you explain the significance to them?


Thursday, April 17, 2014

Holy Thursday

On this day Jesus went to celebrate passover with his disciples. He lowered himself to the same level as the lowest servant by washing his disciples feet. Why? To show his love for them and to "lead by example". He knew that most of them would scatter in the coming day when the crowd would ask if they knew him. He knew that one of them had already set events into motion that would ultimately lead to his death. But he got down on his knees and washed their feet anyway.

Read John 13 to know the full story.

This is one of the last acts that Jesus ever did and it was to show us how to love each other. We should all be humbling ourselves and serving each other. WOW! What a world that would be if we all lived to serve others! Sounds all good and easy, right? Wrong. I know that I struggle with this everyday. I feel like all I do is care for my 3 boys (the 2 little ones and the 1 bigger one also known as "my husband") When do I get a break? When do I get to sleep in? When do I get to do what I want? I can be very selfish and pout like a little kid. I work on this everyday. I try to humble myself like Jesus and take joy in serving others, even if they don't appreciate it all the time. I try not to say "when is it my turn?"

Every year I am humbled by His love for me. My heart is growing heavy because I know what is going to happen to Jesus. I can not imagine what He must have been feeling.

How do you feel after reading John 13? Do you KNOW his love for you? How are you showing others your love for them?

Wednesday, April 16, 2014

God's Not Dead | Official Full Movie Trailer



Have you seen this movie?

I got the chance to see it recently. Churches in 3 of the town around me struck up a deal with the local movie theater to bring it in for 1 week. There was such a demand for it that it kept playing for a total of 3 weeks!

I am loving the fact that this year there have been several christian movies playing on the big screen. "Jesus", "God's not Dead", "Noah", and "Heaven is real" are all playing in the local theater near me! As a Christian this is very exciting! It means that people are thinking about God. They are talking about Him. Even if they don't believe, they are still talking about it. I pray that it touches just one person. It only takes one to change the world. (I hope it touches more than one persons heart, but if there is only one then that is good enough)

I went on the last day it was showing...with 2 teenagers...that were not mine. The school they go to was encouraging all their students to go and offered them a "free" day from the dress code if they brought in the movie stub. At first I was surprised that they wanted to go. Then I was excited. Teenagers now days don't seem to have much interest in God. I thought it would be a great opportunity to get into a conversation with them.

Did I mention that I was excited? I was...till I got to the theater and was standing in line. I am not even 5 feet tall. Both the kids I went with are taller then me. I felt small. I almost felt intimidated. Then I looked around. Most of the people standing there, in line with us, were high school kids! (they all were taller then me...What are they feeding kids now days to make them giants? Why didn't I get any of that?) The more I thought about it, the more my heart swelled. It really didn't matter if they were there for the "free" day or not...they were there. What a great day! The kids were all there to watch a movie about God!

This movie made me think about my relationship with God. I cried, I laughed, I clapped, I sang. It was sooo good that I plan to buy it when it comes out on video. I don't know how much the kids got out of it because they haven't had many life experiences, and typical teenagers, when asked what they thought "I liked it" was all I got. (they did talk more about it to their parents so that is good)

Without giving too much away, there is a character that finds out they have cancer. They cry out when they are at home. You can tell they are mad and were thinking "Why me?" I was taken back to when I found out I had cancer. I felt bad for the character because they have no one to support them, no one to stand by them. (this was the part that made me cry) I remember thinking that same thought. Then anger, shock, frustration and "what now?" set in. I am so glad that I had family in friends in this life that supported me, but I am really thankful that God was already in control of my life and I knew it.

If you have the chance to see this movie you should. Share it with others if you can.

Tuesday, April 15, 2014

Standing

 

This is our latest contraption. It is really old and just being borrowed till we can get a new one for ourselves. It is an all wood and Velcro stander. It's a bit hard to get him into without him falling over but it works. He seems to like the view of the world while standing. It also allows more freedom of his arms. He can only tolerate about 20 minutes at a time but that should increase as we do it more. This should also help get that hip into his socket better so (hopefully) we can avoid surgery. 

Our PT lady said that for awhile no one wanted to use these because they were too passive (they just stand, and don't move) but they have found that kiddo's that should have used them, and didn't, ended up having hip surgery. That finding has changed therapists minds once again and now kids are using them more. I really hope it helps. Time will tell and for now he seems to like it so I guess it's not so bad.

Sunday, April 13, 2014

Palm Sunday

Today is the day when Jesus is welcomed into the city with cheers from the crowd. He knew why he was there. He knew what was going to happen to him. It must have been bitter sweet. To hear the crowd cheering and praising him to know that only days later they would all turn against him, even his closest friends would betray him.
Today, in church, we read the version of Christ's passion from Matthew. The congregation was to read the part of the crowd. We were put into the part of the story that tells Pilate to kill Jesus. That he is a trader and deserved to die on the cross.
I was taken back and imagined myself in that time, saying those words. It was really hard for me. I love Jesus so much and am so moved by what he did for me, I have a really hard time saying that he deserved to die.
This week I want to focus on the true meaning of what he did...for me...a sinner...a human that makes many mistakes. I am so grateful. I can't believe that someone would die to save me. I would die for my family, but a complete stranger, who was born thousands of years after me? I don't know if I could do that.
Could you? Do you believe that Jesus died to save you? Do you feel worthy? How are you remembering what this week really means? Are you ready to take up your cross and walk with him as we are instructed to do?

Saturday, April 12, 2014

A hard season of life

The Lord will guide you continually, and satisfy your soul in drought, and strengthen your bones; you shall be like a watered garden, and like a spring of water, whose waters do not fail. Isaiah 58:11

There was a time, not to long ago, when I didn't think I would make it through another day. After a rough pregnancy I had given birth to our first born son, Noelie. We had gone back and forth on what to even call him. My husbands name is Noel III and he wondered if he should pass on the family name. He decided to give him his name because he wasn't going to give up on him. In some way, a different name would have meant we didn't have hope. That we didn't think he would live. On the deepest level, we believed in our son and were not going to give up.

We kind of got thrown into a situation that we NEVER thought would happen to us. Having a handicapped child happened to other people. We thought we were ready. We had almost 2 months of visiting the NICU to get ready. We knew what he needed. We knew how to handle any situation. I spent 2 nights in a private room next to the NICU just to make sure I was ready. On some level I was mad. Mad that I had to deal with this situation. Stressed about the real possibility that I might have to balance this AND going back to work. I thought I was ready though.

I wasn't. We were so excited to finally get our whole family home. I thought I knew what I was in for. The first night was hard. The next night is a blur. Every day that passed I thought it would get easier. I was getting about1 hour of sleep at a time. Up for 2 hours, sleep for 1, all day long. I didn't go outside for 2 weeks. Not to church, for gas, or for food. Several times I thought about giving up. Maybe we could give him up to a better family for adoption. Maybe we could leave him some where. I was desperate. (most of you will not understand how desperate I was and how I got to a place where I seriously thought about leaving him at the hospital entrance. Please no judgement if you haven't walked in my shoes.)

This was the hardest season of my life. Then he got sick. I blamed myself. I didn't take good enough care of him. He ended up back in the hospital and we were faced with hard decisions on his treatment and were to go from here. I was tired. I was glad that he was back in the hospital. They could take better care of him and I could sleep. I did not stay with him overnight...ever. I needed him to be there. I needed to be at home. I did feel tremendous guilt and once again felt like a bad mom for not being there 24/7. I felt like the hospital staff were judging me even though I don't think they really were.

The Lord will guide you continually, and satisfy your soul in drought, and strengthen your bones; you shall be like a watered garden, and like a spring of water, whose waters do not fail. Isaiah 58:11

In those first few months of Noelie's life I had almost given up on him, and on myself, so many times that I had lost track. I didn't think I would make it through. It is so easy for others to say that you will make it through and that it will get better, but when you are in that season, you think you will never get out. This is the way life will always be and it will never get better. 

I did  A LOT of praying and talking to God about life. Why us? What now? How were we going to make it? Was our son ever going to get better? We had to make many tough decisions about life, not just our own but this other little human that was counting on us to do what was right for him. How could we do that? Sometimes I was paralyzed with the thought of doing the wrong thing.

God was guiding us through the storm. He gave us strength. And now that we are on the other side of the storm (just like people said would happen) I am here to tell you that it will get better. He has watered our souls with His water that does not fail. He doesn't hide the pain from us. He guides us through it because He knows we will be better people once we are on the other side of the storm. He loves you and is trying to mold you into the person you were meant to be. Life is hard, but keep praying to Him. Ask for guidance. Ask for hope. Ask for strength. You will get through. It will get better.

I love every moment of every day...now. Our little man has come so far. He will always have some limitations but he is doing so well now. Even though I am a stay at home mom, and get to spend all my time with him, there still doesn't seem to be enough hours in the day to show my love to him. To tell him how proud I am of him, and to just take in all the smiles, giggles, and kisses. I am so glad that we made it through, together, as a family. God brought us together for a reason and God knew I could handle it...eventually. I am so glad he has the family name and that we didn't give up, on him, or myself.
   

Wednesday, April 9, 2014

Reflection series- You are an inspiration

I saved this one for last because I thought it is the most truest statement. I hope this series of posts have helped you through life. I hope you save them for those days when you don't think you can make it through another minute. I hope they have all touched your heart but if you only remember one I want it to be this one. You are great. You are all of these posts. You are an inspiration to others. You will face many more challenges in life but you will get through them...all of them...I just know it. Even if we have never met I want you to know that I am pulling for you. I hope I have inspired you.

Tuesday, April 8, 2014

Love That Max: Special Needs Blog : A look at the Upsee mobility device for kids—and your chance to win one

Love That Max: Special Needs Blog : A look at the Upsee mobility device for kids—and your chance to win one

Click on this link to find out something I am very excited about! She is offering her readers a chance to win one! I have not won a lot of things in my life but I hope my luck changes and I win one of these!

Doctors

Doctors....Our Noelie has over 16 of them! That is really crazy to think of how many doctors he has. Now keep in mind that we don't see everyone of these docs every month. Some we only see once a year. But in the beginning it seemed like we did see all of them every month. Noelie has a lot of "friends". (I feel very lucky that they all communicate with each other very well. From the clinic, to the hospital, to the therapists that come out once a week, they all know each other and communicate behind the scenes, on our behalf to get everything we need.)

Today was a doctor appointment day. We had 3 things done in just over an hour! We seem to be getting these things down pat. He got some shots to ward of CRV. Because of his past lung problems he got those shots last year too.
We also got thumb braces. Part of the L1 syndrome diagnoses is tight thumbs. They stick close to the palm of his hand. We wondered if he would ever use them, but he does, a little. But we have to work at like everything else.
A close up of his hand
Checking out the new braces

  These will stretch out the tendons of his thumb.

We also had a rash that was on his cheeks looked at. I thought maybe it was an allergic reaction to his new bi-pap mask but I was wrong. Turns out it was dry skin!

I am glad it went so well. The braces will take a bit to get used to but he takes them like a champ and will continue to get better.

Friday, April 4, 2014

Raising kids

Tonight I was watching a news program that talked about The choking game. It spoke of a mother of a 13 year old who got a call from the school on Valentines day this past February. They said they had already called 911 and she needed to get to the school right away. Long story short...he died and it was ruled a suicide. He choked himself in the bathroom.

This really threw me for a loop. As I hold my (almost) 4 month old and am rocking him to sleep I am fast forwarded several years from now. I fast forward to when he is 13 years old. I wonder what he will be like. I wonder if this will affect our family. Will I ever get a call like this? God willing I hope not, but it leads me to the question...as a parent, can you prevent something like this? If you can, how? The mom said he was a "happy and good kid" She said he wasn't depressed, had friends, and even made a video the night before where he was goofing around with a sibling like usual.

Is this the answer? Surround your kids with people that love, motivate, and encourage them? With all the pressures of life, peers and trying to grow up too fast...how do parents do it? Your kid isn't cool if they don't have a cell phone in the 3rd grade, or like to listen to christian music, or if they stick up for another kid who is being bullying. We try so hard to raise them with good values just to find out they are getting picked on because of those values? Is this really the world we live in? How do we protect our children? How do we make them well rounded, independent, law abiding, upstanding members or society without scaring them? This is a daunting task that most parents don't seem to take very seriously. Or maybe I am just a bit overwhelmed with this thought. (never mind trying to keep up with all the projects we want to get to from pintrest. I can't even think about those right now)

I am looking for your thoughts. If you can answer any of these questions and help put my mind at ease I would be so grateful. Please tell me that it will all be ok...that it really is not that bad.

Look at all that hair!


This is the comment we get EVERYWHERE we go. Church, the grocery store, the clinic, literally everywhere we go. It is a wonderful head of hair the requires more time at the salon than mine does. Some times he gets mistaken for a girl because it is so curly. I fought getting it cut for the first time but it was really wild. He looked like Albert Einstein. I have thought about trying to cut it myself but I am not good with scissors, and he REALLY hates the electric shaver. I am so glad that we found somewhere close to us that cuts kids hair for really cheap. Well today was the day. Time to get it cut. He did great and looks so handsome, if I do say so myself. He almost doesn't look like my baby but like a little man.




Thursday, April 3, 2014

Join me...Week 3

I hope your week has gone well. Grab your cup and join me for another session of digging deeper into Gods word. In my cup today I have hot chocolate with little marshmallows.

Today I am reading Genesis 24     The story of Rebekah and Isaac. In verse 5 and again in verse 12 The question "what if?" is asked. I am sure there were more of these questions than what is written. I can only imagine what would be going through my head if I were asked to go and find a wife for my master.

This is great because I have had a lot of "what if's" in my life. Really it seems to be where my mind naturally wanders in most situations.

Before getting pregnant I wondered "What if we never have a baby?" When we got pregnant I wondered, "Am I a carrier of this rare genetic disorder?" When we found out I was a carrier we wondered, "Is our baby a boy or girl? Is he affected? or will she be a carrier too?" When we found out it was a boy and that he was affected we wondered, "What will he be like? How will our lives change? Will he live? If he does, how long will he be here?"

When the doctors finally took me seriously and looked deeper into my stuffy nose they found a lump, that's when I wondered, "what if it is cancer?" When the first biopsy was inconclusive I wondered again, "what if it cancer?" When the second biopsy came back with the cancer result I wondered, "what now? I am pregnant. can we do something now? or does it have to wait?"

The thing I had to remember through all of those "what if" moments is that God was guiding every step, Just like he did with Rebekah and Isaac. God made sure that the servant was exactly where he needed to be, when he needed to be there. God made sure that Rebekah was not too tired to fetch the water. God made sure that her family knew His plan and allowed her to leave her land and go with the servant. God made everything line up perfectly so His plan could be carried out.

I have said it before and I will say it again... you are ALWAYS EXACTLY were you should be. That red light when you are running late only to see an accident just up the road. The day you call in sick to work and the World Trade towers get hit by airplanes. That package of meat you were supposed to pick up from the store but forgot, only to realize later that it has been recalled because others have gotten sick. I am sure you can think of a few too.

I know that God waited 8 years to bless us with a child because he knew we weren't ready. I know that He gave me the group home job so I was prepared for our first child and all of his needs. I know He gave us Noelie to help find my cancer. I know that God and Grandma Felix co-conspired to bring Noelie into the world on the 9th anniversary of her death. (Why, I am not sure, but the picture in my head of the two of them together is amusing) I also know that God gave us our second son so close in age to Noelie for a reason too. (My hope is to help his older brother through life but that is yet to be determined) God has been guiding my life for a long time now and I have no reason to think that he is just going to stop. Well that makes me feel better!

How has God guided you through life? Do you think you are where you should be? If you are going through a rough patch in life, do you think there is a reason? What do you think it is?

Refelection series- You are tough

There are times when I was on the phone with a supply company for hours trying to get our needs met. It feels like the pull any old nitwit off the street, plunk them in a chair, and hope for the best. This is when I wish I could reach through the phone and slap them in the face. I have come to the realization that if I am assigned to one person in the company that I can talk to every time I need something, things go a lot smoother. They know me and I know them. Getting to know the person on the other end of the line helps everyone stay calm and become empathetic to any situation.

How have you shown you were tough? What advice can you offer to someone just starting to navigate the system? 

Wednesday, April 2, 2014

Reflection series- You know what you are doing

That is so nice to hear, isn't it? I have found this to be especially true in our situation because Noelie is so rare. The doctors don't really know what to do so they run tests and guess. I get asked all the time "so what does his future hold?" Honestly, no one knows. We know what is probable. We know what he has done so far, and we know what we would like him to do in the future. But know one knows for sure. He has defied the odds so far...there is no telling what he will be able to do. So for now we "fake it till we make it" and keep pushing through.

Have you found this to be true in your situation? Aren't we all just guessing?

Tuesday, April 1, 2014

Reflection series- You are talented

Thank God for your many talents! We all try to do what is best for our children but for parents of special needs kids it seems we try extra hard sometimes. We think about things that most parents don't ever have to and we are pretty dang good at it. Case in point, when we brought Noelie home (and many months after) he was attached to tubes. A feeding tube and O2 tubing. You know those great play and sleep onesies or the sleep sacks that have zippers? With all the tubes hooked up 24/7 he couldn't wear any of those. Why? Because the zipper started at the bottom and ended by the neck. All the tubes would be coming out by his head! I thought about it and recruited my aunt who knows how to sew to have her move the zipper up about an inch. This allowed the outfit to be completely opened and room for the tubes to come out the bottom by his feet! Pretty creative, right?

What are your talents? What solutions to your problems have you come up with that most parents don't have to think about?