Little update on Luke. Still waiting on insurance to find out if the power chair is approved. He's so good at driving it now and we have sent lots of videos of him demonstrating driving through doorways and to the table to get his drink, etc. So prayer that the approval comes through!

Luke has had so much fun at his preschool two days a week. Unfortunately he has been sick about every 3 or 4 weeks and that takes him out of school for a week or two. Its really hard for him to get through these respiratory viruses so we feel like we should take him out for Dec to keep him healthy especially since we will be traveling to PA on Christmas. This kind of stinks since he likes school so much and its really nice for me to have a break, but he should be good to go back in Jan. We are also looking into the possibility that he could be aspirating a little and getting sick from that too. Might need to do another swallow study to see where he's at with that. Luke is only tube fed now. He refuses to eat so we give him formula to provide all his nutrition. 

I haven't done a blog in a while. Just feeling up and down alot. Its strange that I can feel so happy and proud when I see him drive his chair or say something I understand and at times so sad that he isn't able to do more. The thing is he's really happy for the most part and I'm so thankful for that. I just get tired of doing things to my baby that I shouldn't have to, like suction him when he's sick and use the cough assist machine to blow air in his lungs and then suck it out so he can cough. 

God sometimes seems so distant. Sometimes its hard to believe he's doing something good in our difficult situations. Lately when I read the Bible I don't feel a whole lot. But this one scripture keeps staying in my mind, Proverbs 25:2 It is the glory of God to conceal a matter. Kind of frustrating for us, but it comforts me some that its ok that there is so much we don't understand. God plans its that way. He really is being glorified through our hardships.

Someone asked me recently what helps and what doesn't help being the mom of a special needs child. I thought about it and came up with a few things. It made me think about what I say to people that I actually get tired of hearing myself. We say things that aren't bad at all, but maybe there is something better to say. Lots of time I hear people say I'm sorry and I can't imagine what your going through, and I could never deal with what you are. I say that stuff to people lots of times too.  It really isn't bad and sometimes that may be the only thing to say, but when you have a child with special needs you hear that stuff alot. It kind of makes me feel disconnected from people and pitied. We all feel sorry when someone is sick or someones kid never sleeps, or someone is just having a hard time. There isn't a perfect thing to say. But encouraging words are always good. Your not alone. Praying for you. Many times people ask what they can do to help. Its really hard to ask for help and sometimes I don't know what to ask for. I think just staying involved in our lives means the most. Getting us out and doing something normal. Also I've always appreciated a meal when Luke's been in the hospital and a visit from a friend. Recently some girlfriends came over and I was dreading being asked how I was doing with sad faces. But we all just talked about normal things and it was great! Thanks girls! I think parents with special needs kids do want to be asked how they are doing just not with pitying faces. We want to continue to feel some normalcy. I'm so grateful for friends who have stuck by me.

Iron Man

Rapunzel

We spent the past week in this hospital room. Luke had a tough week with pneumonia. This was the sickest he's ever been. He was having such a hard time breathing he started using a bipap machine. It helps moves the air in and out so he doesn't have to work so hard to breathe. Its only needed when he sleeps. Most kids with SMA eventually need bipap while sleeping and some wear it all the time. We thought it would be further down the road for Luke so we were kind of upset. We were concerned how he would react to the mask on his face, but he tolerated it alot better than we expected.

I remember seeing kids at the SMA conference wearing the bipap and I thought it was sad, but now its just a new machine to go along with our other ones. Its actually not such a big deal and its really going to help him. God gives us grace to learn and manage more than we ever thought we could.

Livi picked out the shark for Luke

Livi is doing awesome at kindergarten! She's at a Spanish immersion school and after 2 weeks she already knows lots more Spanish than both of her parents!

It was hard for me the first few days dropping her off, but I'm so proud of her and its so fun to watch her 

learn.

Luke also had a first day of school! We found a great church that has staff that can care for special needs kids. I was very nervous but he had great time and all the kids loved him! Unfortunately he got sick after only two days. We knew he would get sick some, but this hospital stay has shown us how hard it can be on him to get through a virus. We are praying for wisdom about keeping him in school or staying home. 

Thanks for all the prayers this past week. We wouldn't be able to manage without so much support!

Having fun earlier this summer at the Muskogee Water Park

House, hospital, and humble heart

We are finally settled! I know its been a really long time since my last post. We've had tons going on and just recently we got a working computer. Lots has changed! We moved into our new house and love it! Just about a week ago we got our new wheelchair accessible van! Thanks so much to those of you that donated! I can't thank everyone enough. It has changed our lives. Luke asks to take rides in the car all the time now! 

Also we have a new family member, Zoey.

Livi lost two teeth!

And Livi graduated from Pre-K!

We had a wonderful visit with Grandma Marge, Grandma, and Papa from PA.

Enjoying the deck at our new house!

Lukie was sick the beginning of June and had to be hospitalized for 2 nights to get some oxygen. It was a really emotional time for us seeing him struggle so much to cough and get through a virus that turned into pneumonia. He really hasn't been sick before so we didn't know how tough it would be. But he fought hard and God brought him through it!

Luke got an iPad and loves it! It took him no time at all to learn to use it and now he is able to play games and all sorts of fun stuff on his own. 

Livi's room with her chalkboard masterpiece

The princess and the frog.

Insurance has denied Luke's power chair request. This just means we will have to appeal and give more reasons why its necessary and beneficial for him. Its frustrating and tiring having to go through the appeal process and wait on something that would benefit him so much now. But, we are feeling the blessing and gratefulness of waiting on God to provide and He has done even more than we hoped for! Our house and van have made life so much more comfortable and accessible for us. Blessings to all who gave and prayed for us!

Luke's favorite thing lately has been finger painting. And he also loves cars so of course he had to finger paint with a car. 

Luke's muscles may not work very good, but his brain is growing just right. He knows all his letters and can count to 12! His speech is becoming a little more clear to us which is so helpful. He still speaks alot of chinese too.

Livi turned 5 on March 28th!

My little pony pinata

Party at our church's gym

Livi giving her friend Rupert a smooch. We are trying to encourage hugs only, but she forgets.

Easter with the cousins

We closed on our old house and are living with my parents until we move into our new home. We are really looking forward to moving in! At the moment though we are pretty tired from the move and all the stresses of buying a house with inspections and repairs. Its easy to get stressed out with so many things that seem so big. But God has been so faithful to take care of us through everything.

I've been thinking about how I really don't like it when people say God won't give you more than you can handle. It makes me feel like I should be stronger than I am on my own. God gives us way more than we can handle. We wouldn't have a relationship with Him if we could take care of ourselves. Maybe instead we should say God won't give you more than He can handle. He can handle anything of course! For me its hard to keep believing that he can actually carry my burdens. I don't know how to let go of them sometimes. There is a scripture that says God won't let us be tempted beyond what we can handle. But it doesn't say anything about us being supermoms that can do everything on our own. I'm so glad because I feel like I need Him more than ever and I'm so glad He wants to carry my burdens and love me through all ups and downs we go through.

I like this version of Matthew 11:28 from the Message Bible

"Are you tired? Worn out? Burned out on religion? Come to me. Get away with me and you'll recover your life. I'll show you how to take a real rest. Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won't lay anything heavy or ill-fitting on you. Keep company with me and you'll learn to live freely and lightly."