We had a great vacation at the Outer Banks of NC. Lukie's first time in the ocean and he loved it! Also we went to the SMA conference in D.C. Its was really special to see Luke driving his chair around with the other kids. I remember at the last conference two years ago feeling so scared and overwhelmed. It was still emotional this time, but we have come through so much and are so proud of our little guy.

Unfortunately Luke has another broken bone. He slid off the sofa while we were on our trip and the same leg that was fractured a few months back broke again. He had just healed up from his little humerus fracture on his left arm. It was pretty tough being away from home and dealing with it, but we made it. When we got home our doctor here had to set it better and cast it under sedation. Luke did great and is much more comfortable with the cast on it. Its a spica cast so it goes all the way down the broken leg and around the hips and half way down the other leg. So its challenging with diapers and positioning. We know we really need to look into some medication to make his bones harder. We will be meeting with another doctor to look into getting that treated before we go into the scoliosis surgery he will need. We were planning on doing the surgery in August but it will have to wait until we know his bones are strong enough to handle the surgery.

So how am I dealing with all of Luke's needs. Mostly I hold my feelings about all of this inside because it is what it is and I have to keep going and take care of my kids. Of course it kills me to see him in pain. Its really upsetting that his bones break so easily. I dread the scoliosis surgery. But its also become pretty normal to deal with it all. Our life with Luke is different and we just go with it. Doesn't mean its easy for us, but we have lots of help and God's promise to never leave us. Lately I feel God reminding me that I go through all of this with Him at my side and if I will keep that in mind then its much easier to have peace. I just forget to stay in His presence. It makes sense to worry and to fear the future. But I know I need to try and enjoy right now and believe that God can take care of whatever comes. Its a battle that goes back and forth in my mind. 

Glad we rented the beach wheelchair!

Livi had a blast, loved the waves and flying kites, and especially seeing cousins Silas and Maddie.

Vacation with kids isn't exactly relaxing, especially with what happened, but we made some great memories and loved the time with family. 

Prayer for Luke's leg to heal straight and quickly so we can get this cast off as soon as possible. And guidance on treatment for his bone density and when to do the scoliosis surgery. Strength for our backs as Luke is getting heavier to carry around. We are both feeling some back strain. Thankful for Luke's joyful spirit through all this. We are amazed at how happy and content he is most of the time in his cast playing with his cars and watching movies and reading books. Always thankful for prayer!

Update on Luke. We have been home a couple weeks since his 12 day stay in the ICU with pneumonia. He still had a lot of recovery at home once we were discharged, but he is really starting to clear up now. It was really exhausting being at the hospital so long and then coming home having to do all his care on our own. We really have appreciated the meals and of course prayers mean so much and encourage us. This was by far his toughest illness and it was discouraging how long it took him to get through it. We had his J tube placed while in the hospital, which is a tube that goes through his feeding tube down into his jejunem(small intestine). This helped alot because he wasn't tolerating his feeds into his stomach and was throwing up lots which put him more at risk to aspirate into his lungs. He has to be on continuous feeding pump now though because you can't put bolus feeds into the jejunem. So we are getting used to having his feeding pump with him all the time.

Good news is we got his powerchair! Its been in for a while but he was too sick to get in it and drive but now he wants to be in it for hours at a time!

Its so fun to see him be mobile and go where he wants to go. 

This beautiful girl turned 6!

Party at Purple Glaze

Livi says she wants to be an artist mom when she grows up. She has some very sweet friends and cousins that came and celebrated her big day with her.

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We are so proud of her and thankful for her dealing so well with all that we have to do for Luke. She was very concerned when Luke was in the hospital and missed us all being together so it was really great to get home.

Cousins Kate, Shelby, and Lila

When Luke was first diagnosed I prayed for God to give us wisdom for all the decisions we would have to make for Luke. He really has been with us and guided us. With SMA its not like the doctors tell you exactly what to do. The parents get to decide how proactive or not they want to be.There isn't any treatment other than physical therapy and trying to keep the kids as healthy and strong as you can. We knew we were comfortable with the feeding tube and we are so glad we did that before it was needed. Our doctor told us at the last appointment that Jeremy and I need to think and agree upon what we would do if Luke needed a tracheostomy, which is tube that would be in his trachea so we would have a better airway and would be able to clear the secretions easier. It could also be hooked up to a ventilator if Luke couldn't breath on his own anymore. Luke's doctor is concerned because Luke had such a hard time recovering from this pneumonia and its possible he could have complications coming off anesthesia from his big scoliosis surgery that will be coming up in the next year.  He wants us to think about this possibility now just in case we are facing the decision after the surgery. Of course we don't want to have to do that and aren't yet sure if that would be that best thing for his quality of life. Its a decision that I feel kind of mad that we have to make. I'm just trying to remember how God has guided us through other decisions and trying to trust that God will give us peace and guidance for the ones to come. So there is a lot on our minds, but one day at time. Its so important for us to think about all we have to be thankful for or else we feel discouraged. We can't help but feel sad sometimes and grieve, but Luke's life is such miracle and we are amazed at how he perserveres through so much.

Painting a shark at Livi's party

Watch out here I come!

Luke turned 3! We had a really fun party with lots of friends and family.

I got really crafty and made this shark out of cardboard.

And Livi helped me make the jellyfish

His big present was his very own aquarium.

Coen playing in the balloons.

Luke and his buddy Liam

Judah playing pin the fin on the shark.

Grandma, Papa, and Grandma Marge came in town from PA and helped with the party. Couldn't have done it all without them!

Grandma made the adorable cake!

So thankful for these 3 years with Luke. So amazed at how smart and sweet he is. Needing prayer for him this week for his pneumonia to clear up that started a couple days ago. He's pretty sick, needing oxygen most of the time and lots of respiratory treatments. Thankfully we've been able to manage it at home so far. He's really such a tough boy with all he goes through. We've had so much encouragement and prayers for us so thanks everyone. We feel loved.



Cousins

Luke has had a lot going on lately. A respiratory infection that has lasted weeks and a fractured femur. We don't know how the fracture happened, but suspect that physical therapy stretching and exercises may have caused it. He has a cool cast and is feeling lots better now. SMA causes low bone density so this is not uncommon, but we were surprised at how fragile his bones are and it was really hard to see him in so much pain. He's doing much better and will get the cast off in a few weeks. Antibiotics are clearing up the respiratory stuff. Prayers that he stays healthy through the rest of winter. Luke won't be going back to preschool this year. Being sick every month isn't worth it right now. He will start Little Light House in the fall.

We had Luke's orthopedic doctor appointment this past week and they took x-rays of his spine to measure the curve. All kids with SMA get scoliosis because the muscles are too weak to support the spine. Even with bracing there is not much you can do to prevent it. This is hard to accept. His spine is already pretty severely curved. Enough that the doctor thinks we will need to start growing rods surgery in the next year to keep the curve from getting worse. The rods will be hooked on the ribs close to the spine. The purpose is to help support his spine and every 6 months they will surgically go in to lengthen the rods as he grows. We will see the doctor again in 6 months and decide when to start.  It was pretty emotional and scary to see the x-ray and already be thinking about this surgery that we thought was years away. Its hard not to worry about.  Hard to imagine a purpose out of my baby having to go through painful surgeries.  I don't know what to say, but that God has been with us through all of this and will be with us as we keep going. I have to remind myself that God loves Luke even more than me and will help us take care of him whatever comes. 

Powerchair was approved! Yea something good! Hopefully will be ordered soon and Luke can show it off. PTL!

We had a really fun Christmas in Pennsylvania and lots of fun snow days so here's some pics.

Luke's really happy. I feel like the luckiest mom to be loved by this sweet boy. He yells mommy when I come home after being out for only a couple hours like I've been gone so long. He's always so happy to see me. Sure I sometimes get tired of being stay at home mom, but there's nothing I'd rather be doing.