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!

Thursday, June 26, 2014

Home made baby wipes and washing clothes


 

I have recently started making my own baby wipes. A friend did this for years with her kids and we also did this at the group home I worked at. 

My friend would by a roll of paper towel, have her hubby cut it in half with his table saw, then add to oil, soap, and water. Then she would pull out the middle of the roll so it would "pop up" out of the container. This is the fast, less time consuming way.

With having the farm, we got pre-cut paper towels for a really good deal, from the guy that delivers our other supplies to our place. This was cheaper for us but if I want them to fit into any container, I have to take some time to fold them. The soap and oil was the cheapest that I could find but you can use what ever kind you want. I saved containers from pre-bought wipes that we had gotten as gifts.

The recipe is:
  • 1 tbls baby oil
  • 1 tbls baby soap
  • 12 oz water
  • paper towel
  • container

Mix the oil, soap, and water. Pour the mixture over the paper towel and let sit for an hour to insure all the layers have soaked up the mix.

Easy as that! Bottom line is use what works for you. You may need to adjust the recipe to fit your needs. 
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I also wanted to share with you how wash is done at our house. Normally I have both boys in our double stroller. I wheel them to the clothes line. I have the basket of washed clothes by the door. I run back to the house to get the clothes. Then carry the basket to the line. I put the boys in swings hanging from the line and proceed to hang the clothes on the line. When the clothes are dry I do basically the same procedure. It can be quite a task. This particular day, the hubby was home and the young one was napping. I grabbed the oldest child and headed out! This is how it worked out...
This is video of both boys swinging while I hang up clothes on a different day. For a mom who wants to save money by hanging their clothes outside, and has 2 little ones that are unable to walk or take care of themselves for a bit, those swings are a life saver!