Sunday, July 26, 2015

Turning 3 years old!

This little man turned 3 years old!
This is nothing short of a MIRACLE!
6 days old...after shunt placement
He started off so small. Just over 4 pounds, and most of that was in his head. He fit from the crook of my arm, to the palm of my hand. He was 5 weeks early. He couldn't eat from a bottle. He just couldn't coordinate everything it takes to do that. He was a very sick boy and we couldn't hold him until he was 5 days old. We spent 54 days in the NICU. During his stay he got baptized, a shunt placed, tubes put in and taken out from everywhere, countless shunt adjustments, his first bath, lots of time getting suctioned after throwing up, and cuddles from mom and dad when ever we could. I am actually thankful for our time in the NICU. Being first time parents, they taught us what every parent needs to know, and a few extras. If you want to read the whole story click HERE.
His 1st birthday

  By his 1st birthday he was doing better, but still had a lot of health issues. He was in and out of the hospital for many different reasons... a fundopliction, g-tube placement, and aspirated pneumonia are just to name a few. He was fed only through his g-tube. He was on oxygen 24/7. He had a lot of equipment that was attached to him all the time. And he was going to be a big brother.

Birthday #2
The picture above was on his second birthday! We were so excited that he made it to that day because so many people said he wouldn't. By his second birthday he had a wheel chair. He was only attached to oxygen at night. He was making great strides in therapy. He still was getting most of his nutrition from a tube. He was a very tolerable big brother. And he smiled all the time.

Birthday #3
Today, He is 3! He still has his wheelchair. He is on a bi-pap machine at night. He still gets most of his nutrition through a tube. He is going to start school in a few months! He loves his younger brother. He makes friends every where he goes because of his smile. He has nursing care...Finally! And he is going to be a big brother again.

Just in case you didn't see enough pictures... ;)

Swimming is hard work

A few friends

Noelie is 3 and mom is 30 weeks pregnant

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Friday, July 24, 2015

The end of an era

 Today is a sad day for me. Today we have to say good bye to some great people. Today we are ending an era and starting on a new adventure. Today we are ending our time in the early intervention program, otherwise known as the Birth to 3 program.
Working hard
Our son is turning 3 in a few days and by law, as the program title implies, he can only get services until he turns 3. They used to be able to continue coming to peoples houses until the school year started but, because of budget cuts, they can't do that any more.
A great therapist
These ladies have helped our little man come so far in life. They have been coming out to our house since he was 6 months old. They have helped us get equipment. They have helped us find things to "get the job done" that I had no idea even existed. They have pushed him to his limits...and he would some times sleep for 3 hours after they were gone! They have worked around all kinds of tubes and cords. They celebrated with us every time we got rid of one of those tubes or cords. They have shown us that our son can do more then anyone (including us) thought was possible. 
Another great therapist
These ladies have also helped me. When they first started coming to our house, they were some times the only people I would see all week, besides my hubby. When you are dealing with a special needs/medically fragile kid, you may become very isolated from the rest of the world. You may be in shock. You may not want to leave your house for fear of your child getting sick. It may be too much work to go out because of all the equipment you have to take with. Your friends and family may have good intentions of stopping in to see you, but they get busy with their lives and don't. Or maybe they don't want to get your kid sick. What ever the reasons may be, life can get very lonely. When you get that lonely, being stuck in your head is usually not a good place to be. Fear, anger, anxiety, and darkness can settle in very quickly. 
Yet another great therapist
That was me. Every week and every day. I was in a very dark place and these ladies showed up to our house every week. They listened to me and let me cry. They offered hope. They gave relief to me when I couldn't do it any more. They showed me a new way of doing something to help our son. They told me I was doing a good job, even though I felt like a failure. They encouraged my son to push harder then he wanted, and they did the same thing with me. They brought light into my world once a week. I can not thank them enough!
This is the result of therapy
I hope you have this service available to you and I hope you like them as much as we did. We are sad to see them go but are excited to start school in a couple months. We can't wait to see what new things our son will learn, how he will like hanging out with other kids his age, and being a big boy by doing something with out us there. I am scared and don't think words like "school supplies" and "parent teacher conferences" should be in my vocabulary yet...he is only 3 for goodness sake...but they are, and we are embracing this new thing and excited to see what's next.
A walker that gives us hope



How was your experience when your child had to enter into school? How did your child handle it? Do you need help finding an early intervention program in your area? I may be able to help. Email me and I will see what I can do to help.
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Saturday, July 18, 2015

Reading a new book

Our son just continues to amaze us!

His new book

This is video of him at the doctors office the other day...
What do you see?
First off, I see a little boy being cute and sassy. All smiles and "talking" about the new book, until the camera comes out. As usual, he stops whatever he is doing to hold still because he thinks I am going to take his picture.

Then I see something else... I see a boy that is doing so many things we never thought he would do...

1. Smiling
2. Making eye contact
3. Breathing in his own
3. Interacting with people around him
4. Raising his arms above his head
5. Holding on to a book... with both hands
6. Really taking in the book and loving it

He has come so far in the (almost) 3 years that he has been in our life. If you were to have told me that he would be doing all of this after he was first born, I would have looked at you like you were crazy. But with a lot of prayer, love, and therapy he has gotten this far! I can not wait to see what else he can do. He will change the world someday! He will make a difference in this world... and he has already made one in ours.

I would love to hear from you so shoot me an email, comment on this post, or click the "follow me" buttons and share your story.
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Friday, July 17, 2015

Anniversary weekend get away

The Hubby and I have been married for 12 years! We have known each other for about 6 years longer then that too. We have been through so much in our marriage and I am proud to say that we even still like each other! 
We have seen 9 years of infertility.
5 years of dairy farming, starting from scratch.
8 years of myself working at a group home then being forced to quit after the oldest was born.
12 years of home ownership.
12 years of trying to make a better life.
3 business start up and not pan out like we hoped.
(Almost) 3 babies in 3 years!
Helping our special needs child through life.
Countless memories.
Lots of laughs.
Growing and changing as a couple and as individuals.
I can't wait to see what the next 12+ years will bring.
We got people to watch the boys for the weekend, got a hotel in a city about 3 hours away, and got to enjoy our time together. People asked what we were going to do and our answer was..."It doesn't matter, we don't have the kids with us!"
Here are a few pics from our trip...
Our hotel lobby

I still love this man

When will the food get here?

Spicy fish tacos

Our view while we eat
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Monday, July 13, 2015

3 Sleep Studies in May

Have you ever been hooked up to this many wires...
Almost all hooked up and ready to sleep
...and still smiled?
Yea, me neither. But this boy does. 
The end result

This boy has been through so much and still smiles (almost) every time I bring out the camera.

He had 3 sleep studies in 1 month because they wanted to re-evaluate if his current Bi-pap machine is working for him yet. We have concluded that it wasn't.

They switched us to a ventilator and a full face mask. That was a huge deal for all of us. Our nurses need extra training. The machine was alarming all. the. time! We could tell that he was not getting a restful good night sleep. Then about 2 weeks later, after the alarm going of 41 times in one night, the doctors decided to switch back to a bi-pap machine that is different from our other one. It has been working great so all is good but, I wish things would would have been communicated better by everyone. Here is what went wrong...

1. The doc ordered a bi-pap and the company said they didn't carry it. But 2 weeks later they did?! Turns out that the Doc had to sign a form saying that it was ok to use it even though the FDA does not want children that young/small to use it. 

2. If we would have just gotten the other bi-pap machine then our nurses wouldn't have needed the extra training.

3.I didn't know we were getting the other bi-pap until the equipment company called me at 5pm and said they wanted to drop it off that day yet. 

4. The bi-pap was dropped off on a Thursday evening. When it was all ready to go at bed time it alarmed every couple seconds. We tried 2 different "after hours/emergancy" numbers and got a hold of NO ONE! (talk about one pissed off momma bear... at 10pm) We got the alarm to stop for the night.

5. Tried calling the 2 Doctors involved in getting the machine...both were out of the office on Friday, so we had to wait till Monday to hear anything. (probably a good thing because it gave me time to cool down)

I am not sure how this system got so broken, or what we can do to fix it, but this whole situation had me steaming mad for weeks afterward. I am glad that he is doing well on this new machine. He only sets off alarms 2-4 times a night vs. the 41 one night, so it is better. And everyone involved has apologized so I guess I will let it slide...this time.

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Thursday, July 9, 2015

Easter, and coloring eggs

Easter 2015
I am not sure when you started coloring eggs for Easter, or how you did it, but we started this year with our boys. The oldest is 2.5 years old and the youngest is just over 1 year. 
The youngest got to use the store bought dye tablets that you drop into water. He was really more interested in getting the eggs out of the water so he could drink the water, then he was in making the eggs turn color. Oh well, maybe it was a bit too soon. Hahaha
BUT the oldest... he got to try something new and fun! I added food coloring to shaving cream, dropped an egg in, and let him roll it around. He got VERY messy, and had colored elbows for a few days, but he had fun. According to the instructions, you are supposed to leave the cream on for an hour then rinse off and viola... tie died colored eggs. Well it didn't exactly work that way. I left the cream on for 4 hours and the color was still pretty light. Oh well, we had fun and will probably color eggs that way again next year. 

Here are a few pictures...

Pie pan + Shaving cream + Food coloring + Eggs = sensory fun at Easter

Waiting for the eggs to dry

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Wednesday, July 8, 2015

Natural Thistle weed killer

I don't have a lot of tips to make life easier but I do have this new one, AND if you want to see any of the other ones I have come up with in the past click HERE.  
How to KILL Thistle weeds!
Drill hole into the weed

Pick a stretch of nice, no rain, weather. I find that 3 days without rain will help. Grab something sharp and pointy. I like a screwdriver. Find the middle of the weed and jab the sharp object right in. Use a swirling motion to make the hole bigger.
Add salt
Pour table salt into the hole.
24 hours post salt
Wait.... This is 24 hours post salt...
48 hours post salt


48 hours later.... 

72 hours post salt

and 72 hours post salt! It's completely gone! No harsh chemicals. No danger to kids or pets. Easy peasy.
The salt kills off the oxygen supply right at the roots. 
Do you have any tricks that help make your life easier? I would love to hear them! Leave a comment or drop an email and share them.

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