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.

\

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. 



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