Wrapping up a hot summer

It's the last day of August and when you lived in the desert that is a GOOD thing! Summer isn't too bad here really. I equate it to winter in the northwest, meaning there are a few months where outdoor activities are not a good idea. What makes it more tolerable than winter to me is the fact that it is sunny EVERY day! We did get out of the house with Nicolas a few times. Luckily his big sister Allie is his FAVORITE and she is an expert in entertaining him.

She snapped these pics while we were driving around looking at houses

 Nicolas is doing great! He is so amazing. It is hard to describe but it's the most incredible thing seeing him learn and grow. He is cognitively at age level, in other words, his mind works like any typical three year old mind. He has a naughty side. He likes choosing the wrong answer when his teachers/therapists question him on colors or animals, something he obviously knows the answer to! He kind of squints his eyes and chooses the incorrect one as he looks out of the corner of his squinted eyes at them to get a reaction. It's super funny. I just realized he is confusing the gobble gobble of a turkey ...he thinks we are saying gabba gabba, from the children's show "Yo Gabba Gabba" . We wondered why he was making a certain sign after signing turkey during the song he would change his sign to one that looked like jazz hands by his cheeks. I had no clue what he was trying to say as he signed that sign and we sang "with a gobble gobble here, and a gobble gobble there" UNTIL he was choosing a netflix movie and when Yo Gabba Gabba appeared on the screen and I looked at him and he was signing yes yes, and the jazz hands by the face sign. It clicked in my head that he was signing Gabba Gabba for Gobble Gobble... LOL I am not sure I made that clear or not but just trust me it's adorable! ;)

Nicolas playing with the fire truck his
big brother Ollie gave him!

Awareness

Nicolas has changed me forever. I cannot tell you how with mere words and with the limited space here, but I can tell you for sure that he has. 

Mommy's boy

Our little guy is getting so big!  

Sharing with Cookie Monster

                        Love that messy face!

                         Signing mommy :)


                            

Almost TWO ..cute

When I started this blog I had no idea what life had in store for us. I guess I still don't. I do know that the little boy who wasn't supposed to live longer than an hour is laying on his playmat demanding more food on his binky! For that, I am so grateful.






Nicolas is the sweetest boy you can imagine... Huge smiles, tons of expressions, super eager to learn sign language... He brings so much joy!

Gtube surgery next week- PLEASE PRAY

Dec.6th Nicolas is going to have his gtube surgery. He is also going to have his trach upsized as well. I am so nervous. I struggle with fearing the worst.Please pray for Nicolas to do come through all of this ok. Pray for guidance for his medical team. The procedures he is having done are simple but he is complex! Our little guy is so strong. He is such a joy. Pray that I am strong enough to actually take him into the surgery..I want to hide him under my blankets and snuggle with him forever!

Back to Blogging.. and feeling good about it:)

I am not sure why I stopped writing here. It happened when we went home from the hospital. I think we had so much going on that the blog started getting cobwebs from lack of use. Plus it seemed like no one was following it and I was updating on facebook so my family could just get their updates that way.
Getting out of the hospital was a nightmare. March 17th That was a good day. Having my baby at home again. You don't know how good that feels until you have had a child in a hospital.

Our little Nicolas has done so well at home. He has only had ONE cold since birth PRAISE GOD... I do believe God has protected him from illness. I also know that we have been so diligent about who we expose him to, everyone washing their hands, using sanitizer, not letting him put his hands on out eyes and in our mouths or if he does we wash his hands before he touches his face. I'm not sure if it is a good thing or not but I have become germophobic and the rest of the family is close behind!

I need to go and watch a movie with my family. I will post pictures and write more soon.

37 days and hoping to go home soon!

We are all super ready to be out of the hospital and get on with our lives at home. Right now this is our home and if you know me at all, you know how I feel about brushing my teeth in a public restroom. I almost gagged writing that. LOL It is so hard, every time I go into there to brush my teeth I try and find a spot that is clean to look at so I wont get sicked out! I can't go in after anyone else because even the slightest smell sets off my gagging. There are only two parent bathrooms on the 4th floor and one of them has a shower in it. It is always full of hair(well not always) and some people dont smell good showering. It's just one of the many things that are hard about not being at home. One of the small sacrifices we make each day along with the other parents, for love of our babies.
Nicolas is doing well. He is gaining weight. He is sprinting off of his vent for up to an hour and a half at a time. He is starting to roll over, and loves playing with his toys. He smiles at the nurses in his mirror we have set up by his crib. What a lifesaver it has been. It opens up his world and allows him to see what is going on and it makes him a lot happier!




The other kids are staying at grandpas. They came and stayed with us at the RMH and we enjoyed that. It gets expensive though eating out every meal with so many people. It is bad enough with just Nick and I. Nick got food poisening and was sicker than ever yesterday. Poor guy!




We are dealing with so much, case management here is a nightmare. We are hoping to be able to go home next week. Will let you know when we finally get home! Love, jenna