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!