Surgery Day

 We have had a long day and I'm so glad its almost over. We had a get up at 430 to get to the hospital 2 hours before his surgery at 715. It was so hard to let them take him, but he did so good thanks to the medicine they gave him that helped him to relax. Surgery didn't taken long and it went great. We thank God for everything going so smoothly. It was really hard to see him in the recovery room because he was pretty upset for a while, but after getting settled in our room and cuddling he got better.

Right after surgery

After a long nap today he was back to his chatty self and making all the nurses laugh. We are so proud of him. He was such a brave boy. We never imagined having to put our baby through this, but we believe it will be a blessing to him when we need it. We couldn't get through these things without so many friends praying. We felt really blessed today to have so many people thinking of us.

Fall & Family

 Love this pic of my sweet pumpkin! I can't believe how big he's getting. I love his smile and his voice and how he tells us stories we can't understand. Its hard to stand sometimes how SMA has taken so much from what he can do physically. He fights to do the littlest things. He was so proud of himself the other day for using a fork for the first time and getting food into his mouth. Thats alot of work for him but he doesn't give up. We aren't going to give up either on fighting for him and helping him to do all he can. He teaches us so much by how hard he works.

We have decided to get Luke's feeding tube placed. Its a tube that goes directly into his stomach. There will be a little button on his belly that we can use to feed him when needed. He's still going to eat by mouth, but the tube will be there for when he refuses to eat or gets sick and is too tired to eat. If he doesn't get good nutrition then he will get weaker. Luke's really healthy right now and we want to get the tube placed now so that recovery is easier. If we wait and he gets sick it will be much riskier. So many SMA families have told us what a blessing the tube is. We don't want to do this of course, but have peace that its the right decision. So be praying for Luke's surgery on Oct. 19th.

We just had a wonderful week with Jeremy's mom, dad, and brother visiting from Pennsylvania. Livi and Luke loved spending time with them. Livi especially loves her Papa and spent every minute talking his ear off and playing with him.

 Jeremy's parents are such a blessing to us and are prayer warriors for Luke. We couldn't get by without both of our families helping us with deal with how our lives have changed with our precious boy.

A couple more pics from Anna's wedding.

A few more pumpkin patch pics.

He's telling a story here.

Just a little update on Luke. We have a power chair at our house to demo for a while. Its great to see Luke move around, but there just isn't much room so it also makes us hope for our house to sell soon. Luke mostly goes in circles because its all so new to him. Its also a little scary to him to be moving on his own since he never has. Its going to take patience and practice. 

We found out at Luke's last dr. apt that he has dislocated hips. This is common with SMA and would take surgery to fix, but its not necessary to fix unless he has pain. He doesn't show any signs of pain thank goodness. It made me upset to find that out of course, but its just part of SMA. The muscles are weak and aren't keeping the hips in place because he isn't weight bearing. 

We have decided not to make the trip to the specialist in Utah that we went to in January. We have great doctors here and don't see the point of spending the money when its more for their research. 

We had been considering getting Luke a feeding tube. Lots of kids with SMA eventually need one because eating can take up so much energy and some kids have trouble with the muscles used for swallowing.  Luke has done pretty well with eating, but their are times when its hard to get him to eat and we wonder if he's getting enough. Part of it is probably just his age, he's getting picky like all kids. Some families get one proactively so in case they get sick they will be able to get nutrition in them to help them get better. Its a hard decision, but right now we feel like he is doing well enough and we want to wait. We are praying that God will continue to give us wisdom in this.

Luke is doing well, but I think I was hoping we would start to see him getting stronger and being able to sit on his own. We are no where near that. I've noticed that his head falls forward alot more and he can't get it back up without help. The thing is he is getting bigger and its harder for him to do some things that he could before. Its work for him to get food to his mouth. But he does it. The littlest things are so hard for him, but he is still such a sweet happy boy. He can do other things though. He talks and talks and talks. We can't understand it yet, but love to hear it. And now he can go on bike rides with Dad in his new bike trailer.

Jeremy took Luke on an 8 mile bike ride and Luke loved it. 

My sister Anna got married and Livi was a flower girl. She did a great job!

Livi had a blast dancing at the wedding

We planted our fall garden- lettuce, basil, and cucumbers here.

We are so thankful for all that God has provided for our family to take care of Luke. We have dropped the price of our house in hopes of getting a buyer this fall. Prayers for this would be really appreciated! 

We are still praying for healing for Luke and know that God does miracles. I don't understand all of this and why its happening, but I still want to worship God and trust in his goodness. Through all of this I have realized that God really is my rock. My refuge and hope. Thank you all for reading and praying for us. 

 He alone is my rock and my salvation; he is my fortress, I will not be shaken. Ps. 62:6 

No matter how hard things may seem these days his smile helps me through. Listening to him try to talk and sound like he's speaking chinese makes me laugh and feel grateful. I have the sweetest little boy.

When I take the kids to the park I start thinking more about what Luke should be doing at his age. Walking around and climbing on stuff. Chasing his sister around. Going down slides. I start feeling down.  I know it will get harder as he gets older and knows more. But for now he loves watching his sister and he loves being pushed in his stroller. I'm trying to stay in the moment. Too much stuff I could worry about in the future. So Livi took Luke down a little slide. We blew bubbles. Luke was happy. He watched and laughed at his sister.  He loves being outside. So glad fall is coming so we can get out more!

At the park enjoying the breeze

Laughing at sis

Livi taking Luke down the slide

Love this girl. 

Hanging out with our friend Judah

Livi's first manicure with her friend Lexi

Its easy for me to start feeling down and when things seem unfair and hard. My heart hurts that Luke can't do more. But I'm trying to look back through my life and remember all that God has brought me through and done for me. Nothing is too hard for Him. He hasn't ever left me. I can trust Him to bring me through whatever is ahead. 

Why, my soul, are you downcast? Why so disturbed within me? Put your hope in God, for I will yet praise Him, My Savior and my God. Psalm 42:5

SMA Candle Lighting

Tonight at sunset all SMA families and friends will be lighting a candle to remember the SMA angels that are no longer with us and all SMA warriors that are battling SMA right now. Say a prayer and light a candle for us tonight that a cure is found. Pray for the families who have lost their babies and for those of us that are daily living with the challenges of SMA.

We received Luke's fancy xpanda chair this week. Its taken months to be approved through insurance so we are really excited to finally have it. The xpanda is a chair we will use at home to keep Luke really supported since he can't sit on his own. SMA causes scoliosis so we need to be mindful of his posture most of the time. It has a hydraulic base so it can be low to the floor or up at the table. It has a big tray for toys and eating.

Livi trying to make Luke laugh

SMA Awareness

Livi took this picture of us

August is SMA awareness month. So I don't really like to talk about the genetics of SMA to people because I don't want to scare anyone. Lots of the SMA families we have met do so much to spread awareness, but I don't like to tell people they may be carriers of SMA. I'm sharing all this to make people aware and understand better what SMA is. Jeremy and I had no clue we were carriers of a faulty gene. Being a carrier doesn't affect the person. You have no way of knowing unless you are tested for it. Its just a simple blood test to find out if you are a carrier. There is no family history of SMA on either side of our families. So this is how it works. When both parents are carriers of the SMA gene then there is a 25% chance of each parent passing the SMA gene to children with each pregnancy. A SMA gene from both parents cause the child to have SMA. When both parents are carriers there is a 50% chance the child could become a carrier from one SMA gene from one parent, but be unaffected by the disease and also there is a 25% chance child will not be a carrier or get the disease. So when just one parent is a carrier their children will not get the disease, but have a 25% chance that they could become carriers. About 1 in 40 people are carriers of the SMA gene. One in 6000 babies gets SMA and its the number genetic killer of children under 2 years of age. Children with SMA are missing or have an abnormal SMN1 gene. The SMN1 gene is responsible for producing a protein that the motor neurons from the spine need to send out to the body to have normal movement. Without the protein the motor neurons die and the muscles atrophy. So those are the facts. Luke got the gene from both of us and Livi didn't. We will let Livi decide when she is older if she wants to get tested for being a carrier. There are 12 drugs in research for treatment and curing SMA. There could be a treatment in the next 5-10 years. I really don't dwell on that much because I have to focus on today and what Luke needs to make his life the best and fullest it should be. But it is exciting that they are so close to finding treatment.

Luke loves books

I know I put lots of pictures of Luke smiling and looking happy, but its not always like that. He is a really happy boy, but he gets frustrated and tired of sitting. He wants to move.  Everyday is challenging.  We are still learning about how to best take care of Luke. Questions about diet and equipment still to figure out. Sometimes I feel like I'm barely keeping it together. I have to take a deep breath and pray help me Lord. Just a short simple prayer. I ask God for help and I am believing that He will. I don't feel like I can take a step without Him.

I lift up my eyes to the hills, where does my help come from? My help comes from the Lord, the Maker of heaven and earth. Psalm 121:1-2

Strong arms!