Monday, July 28, 2014

It's our journey

Sometimes we lose friends. Sometimes we gain friends. Some people want to be a part of our journey, some don't. And that's ok. We are all on a journey and sometimes it seems so hard to realize that and accept it.
 
  I have many "friends" on Facebook and Google+. Some I know very well and have known forever, some I have never met but have become very close to because of the internet, and some I have never met and probably never will. I recently have had to come to terms with the fact that not everyone understands what we are going through because one of those close friends that I have known forever, has deleted me as a friend.

This is not the first time, and it probably won't be the last, but those are the ones that hurt the most. I wish that things were different. I wish we could hang out more. I wish we could talk more. I wish I could make them understand what it is like to be in my shoes.

This is our journey, and we are still trying to make sense of it. Realistically, I can't ask or expect anyone else to make sense of our journey when we don't even have it figured out. And they have their own journey that they are trying to figure out.

I never thought I would be a parent of a special needs kid. I never thought I would have to quit my job when we weren't financially ready to. I never thought farming would be so hard. I never thought I would know every different way to the hospital cafeteria. I never thought I would have to fight cancer. I never thought life would be this hard and this much of a struggle. I never thought that the system to help families like our was so broken and confusing.

I also never thought I could love this much. I never thought I was this strong. I never thought I would meet so many great and wonderful people. I never would have thought that I could have so much joy in my days. I never thought I could live every day in that moment. I never thought that I would consider myself one of the lucky ones, even through all the pain and worry. I never would have thought...

It still stings just a bit, knowing that someone I considered a friend doesn't even want to talk to me now. It hurts that they never came to me. It hurts that they never even tried to understand. I wish things were different for us, but I wouldn't change my life. There is a plan for all of this and I am not going to beg someone to be my friend whether it be online or in person. The people that want to understand and be in my life, will be. And I am grateful. 

Wednesday, July 23, 2014

Looking back at almost 2 years

Perfect little fingers and toes
It is hard for me to wrap my head around the fact that our little man is almost 2 years old already! I really did not think we would have him with us for this long, but he is doing great and making progress every day! God is so good and definitely has a plan for all of this.
One of the scarier hospital stays
I was going through all the pictures that we have and love seeing how far he has come. The picture above is not easy for anyone to look at, but it is even harder for the parents. This was a common sight for us in the first few months of his life. We actually got used to seeing this! I am so thankful that this is not a common thing any more. No one should be used to this.
After surgery to twist his stomach and add the g-tube

We fought this. We didn't want our baby to have another surgery. This was so permanent. Our guts were telling us to not do it. We didn't want our baby to have his inside twisted or have to rely on a tube to eat. We were convinced that he would learn to drink a bottle, He just needed more time. After spending 2 weeks at home, getting absolutely no sleep, still having to deal with a tube down his nose, worrying all the time about him turning blue, and finally realizing that he got sick and this just wasn't working...we finally gave in and had the surgery. It was the best thing we ever did! 
So tiny
I just love this picture! I think we all forget just how tiny they are. Our little man was 4lb 5oz and 15 3/4in long when he was born. He is now a whopping 23 pounds! We love him more and more every day and couldn't be more prouder of him.

Friday, July 18, 2014

The circus came to town

They were only here for a day...it was within walking distance...and both kids were FREE!
 

All of those reasons were good enough for me. I don't ever want my special needs child to not be included. We have ALWAYS made it a goal to have him experience life just like any other kid. So we take him every where we go. The only excuses we have for not taking him some where are things like...it's -20*F, it's 90*F with humidity, he is sick, or in the hospital... things most parents with "normal" children worry about.

The thing is that he doesn't always like the things we are doing. Today was one of those times. His younger brother loved watching all the people and getting attention from all the people we knew that came to watch the show too. Noelie could have cared less for any of it. Sure at the end, when we were taking to all the people we knew, then we got smiles and giggles. On the walk to the show and back home again, he was all smiles. This is the way it goes sometimes.

He proves to us, time and time again, that he definitely is his own person, with his own likes and dislikes. He likes doing things. He likes moving. He likes bumping around on gravel in his chair or stroller more then he likes watching some silly show. I can't wait till the county fair comes to town and we can take him on rides! 

Monday, July 14, 2014

Packing for our weekend away

We left on Friday morning and returned Sunday evening. I started packing the on Monday before....
The whole families medication (and an ice pack) in a cooler because some needed to stay cool.
All of our stuff shoved into one corner of the house
3 days worth of food for the 2 little ones
The boy's bag.
The medication cooler had 8 different meds in it and all the syringes and measuring spoons that are needed for administering the meds. Some for me, some for the hubby, and some for one child.
The food bag had 7 cans of liquid formula, 1 unopened can of powder formula, 6 jars of baby food, 2 bottles, 2 spoons, 2 measuring cups, and 2 pacifiers
In the boys bag I separated each side by putting the items that both boys would need in the middle. I put matching tops and bottoms into zip lock bags. I put the warmer clothes that we were not anticipating on wearing (but need along just in case) on the bottom. In this bag there is:
Both                                                Child 1                            Child 2
4 wash cloths                                  1 swim suit                      3 overall shorts
2 towels                                          3 onesie shorts                2 onesie shorts
9 burp rags                                     2 shorts                           2 pants/short sleeve
6 bibs                                             2 short sleeve shirts          2 pants
4 tegaderm films                              2 pj sets                          4 onesies
8 packages of 2x2 gauze pads         1 coat                              1 coat
3 food bags/1 extension                   2 pants                             1 pj
1 package swim diapers
2 probes and 1 pulse ox monitor 

In our bag we had: 2 pairs of jeans, 2 pj bottoms, 2 shorts, 5 tank tops, 2 sweatshirts, underwear, socks, dress clothes, shoes, slippers and scarfs.

We had a separate bag for bathroom stuff like shampoo, soap, shavers and make up.

We had a separate bag for all the diapers and a box of wipes.

We also had a separate bag for toys.

We took a pack n play (for the youngest to sleep in), a portable highchair (for the youngest to sit at the table), a bipap machine and sterile water (for the oldest to wear at night), 2 big O2 tanks (to run through the bipap at night), a walker (for the little one to stay entertained), a kid cart (for the oldest to sit in and be comfortable), floaty toys (for in the water), fishing poles and tackle box, a shower chair (to bath the oldest after playing in the lake), and the food pump and pump travel bag (so the oldest can eat)  

We also brought some food along to contribute to the meals for the group.

Yep that is it (I had to reread the list to make sure I got it all). That is what it takes for us to leave for one weekend away from home. We had a great time! The kids hardly had time to eat or sleep because there was so much to see and do. The hubby and I took advantage of all the people with us to care for the kids and got away for the evening to celebrate 11 years of marriage. It is good to get away. We certainly don't do it as much as we would like (because it is so much work) but it is good to be home too. We can't wait to do it again next year! 

Tuesday, July 8, 2014

Stretching, kisses and counting

We are so proud of our little man! When he was younger he would cry any time we tried to lift his arms up by his head and would NEVER do it himself! He has been giving kisses for a while now and has perfected it. He even will do it when we ask him! The counting is a fairly new thing. I will ask him to count a lot during the day, sometimes he will, sometimes not. Either way these things are huge for him! Who says there is no brain activity? And that it may not get better?



This guy is proof positive that things do get better! There is hope. For any of you that have doubts about something that people are saying can't happen, look at these videos again.

Please don't give up hope. Don't always listen to the doctors. They are not always right. Keep plugging away at what you want. Find people that can help you. Keep trying. It may seem to take forever, but it will happen. If it doesn't work out one day that doesn't mean you can't try again the next day.

Sunday, July 6, 2014

A great day

First swim of the year
Loves the new floaty
We all like swiming
I think I got the hang of this dad

I could care less about fish, I just want to eat the poll

First time he held the toy on his own and made it play too!
We had a great time just hanging out with family and friends one day! All of this happened that day! We got some new floating toys for the boys. This was the first time using them and after a little bit, they loved them! It is always a challenge to find something to work for Noelie that won't break the piggy bank. The one he is in will work for a while because it can go into 4 different stages of learning to swim!
 
Then we went fishing! Noelie actually seemed to like it and be interested in it but the other one could really have cared less. All of this is an effort to make life as "normal" as possible. I think that is a common thing with families that have special needs kids. We get creative and make adaptations to just about everything so our kids will be able to do as much as possible. We are ambitious like that.
 
After all of the excitement of the day, Noelie still decided to show off with his toy. Until now, I would have to hold this toy while he hit it to make it play. Now he can hold it and make it play all on his own! I still have to hand it to him but he seems to be very proud of his new found independence. We are too!  

Monday, June 30, 2014

Popping corn

I recently entertained a 5 year old for an afternoon. I am not used to doing this with an older child. I looked up a few science experiments. This one worked the best and fascinated me for awhile. It held the 5 year olds' attention for a few minutes.

The recipe:
  • Water
  • 2 tbls baking soda
  • 6 tbls vinegar
  • unpopped popcorn
  • food coloring, if desired

Add baking soda to the water and mix until it is dissolved. Add a handful of corn and food coloring. then add the vinegar. The chemical reaction of the baking soda and vinegar will form bubbles around the corn and cause the kernels to rise to the top!