Tuesday, November 4, 2014

Luke has been loving school! Its been so wonderful to see him make friends and get this chance to go to school like any other child. Amazing teachers and staff at the Little Light House have blessed us so much!

Its so refreshing to walk into a place where there are wheelchairs and equipment and kids with needs like Luke. To be around people who understand what its like to have a child with special needs has been really encouraging. 

Luke was the Beatles Yellow Submarine for the Mini Laps fundraiser for his school. Thanks again to those who donated!

Livi loved cheering on her little brother. We are so proud of him.

Livi has had a blast playing soccer with school friends!

Luke has had his feeding tube changed twice in the past couple months. Its kind of a big deal to have it replaced since we have the J tube, which goes into his small intestine, they have to do it under sedation. We've been having problems with it backing up and leaking. Praying we don't have any more issues with it. Its always challenging to try to figure out what's going on especially when doctors don't know and can't give us any answers. We will start seeing a GI doctor to help manage Luke's gastrointestinal issues. We're also seeing an endocrine doctor now to possibly start some medication for his bone density in preparation for his scoliosis surgery that might happen next summer.  I'm not sure how many doctors we are up to now. Its easy to feel overwhelmed with all his stuff. Even though I've been a Christian for a long time now I still forget how close God is to me in those moments of fear. His peace can be mine no matter what circumstance I'm in. So many times I forget to just ask for help. No matter how much time I have or haven't spent praying His grace and presence is there when I look for it.  When I turn on worship music it reminds me of God's nearness.  I remember God pulling me to worship Him even when I was really young. When I heard praise music I wanted to be part of it. It felt like that was what I was made to do. If I could just stay in the mind of Christ through these moments of panic and confusion about what to do it I know my heart would feel His strength more.

Pumpkin patch with cousins

But even with the feeding tube issues we are really enjoying fall and really grateful for Luke staying 
healthy from respiratory stuff. Thankful for my goofy husband making the kids and me laugh. Thankful that the kids are at school and I get a break. Thankful for a God who doesn't leave me any moment. Lots and lots to be thankful for.  

I look up to the mountains; does my strength come from mountains? No, my strength comes from God, who made heaven, and earth, and mountains. Psalm 121:1

Saturday, August 9, 2014

Luke will be getting his cast off next Wed! We can't wait. He's been so good about it all, but we are pretty tired of being stuck at home mostly for the past 6 weeks.

Every year in August the SMA community raises awareness about the disease. I have done this before on my blog, but thought I'd just say a little about it. SMA is caused when both parents are carriers of the gene and both pass it on to their child. Being a carrier doesn't affect the person, you don't get the disease from being a carrier but can pass it to your child. In our case Livi didn't get the gene from both of us so we had no idea we were carriers since there was no family history. So when both parents are carriers 4 things could happen, the child could get the gene from one or the other parent and become a carrier, get the gene from both parents and get SMA, or the gene isn't passed from either parent and the child is not affected or a carrier. So even if just one parent is a carrier then they can pass on that gene to their child and then the child will be a carrier and possibly risk having a child with SMA someday. I know their are tons of what ifs in life and you can't worry about it all. SMA is rare, 8 out of every 100,000 babies are born with it and 1 in 40 people are carriers. But it is the most common genetic disease in children. It's a simple blood test to find out if you are a carrier. The good thing is there is so much research being done and different drugs in clinical trials to help treat it. But right now there is no cure. I don't dwell on that much anymore, but just focus on what Luke can do and how we can make his life full.

August 10th is the annual SMA candlelighting where families and friends of families with SMA light a candle at sunset to remember and pray for those affected by SMA. We will be doing that and appreciate those of you that also would say a prayer for Lukie and all the special kids that deal with this disease.

One more thing we are so excited Luke is starting school at the Little Light House on August 20th! We are raising money for the school and if you are interested in donating to this awesome special needs school here's the link for more information:


Thursday, July 3, 2014

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!

Wednesday, April 2, 2014

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!

Friday, February 28, 2014

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.