We are...

May 26, 2015

Summer is almost here! It is beautiful today. The sun is shining, the wind is not blowing (a rarity up here!), and the high is right around 80 degrees. The perfect day.

 

So here goes the latest glimpse into our crazy life…

We are now all moved in and settled into our new home. It truly is home. This house is proving to be such an immense blessing. It is everything we dreamed of and more. Thank you, Lord. He is the only one that could have provided such an amazing fit for our family and our new needs. 

 

 

We are amazed.

 

We met with Levi’s primary doctor a couple of weeks ago. Levi’s weight is starting to become a concern. He is not losing weight, but he is not gaining as quickly as he should be. It doesn’t help that he keeps getting taller! He is in the 93rd percentile for height, even passing what his brothers were at this age. In order to try to avoid a feeding tube, his doctor advised us to start him on Pediasure. We have started this, and he absolutely loves it. However, it is not a cheap solution - coming in at about $2 per day. His doctor wrote it as a prescription in an attempt to have Medicaid pay for it, and our pharmacist is currently working on that. She is yet another part of Levi’s “team” that we are so thankful for. She is wonderful to work with. We will keep a close eye on his weight from here on out.

 

We are hopeful.

 

We also recently met with Levi’s physical medicine and rehabilitation doctor. He had some concerns that Levi’s heel cords are tightening. This is the first contracture that has started, and it wasn’t easy news to hear. We know that contractures are an unavoidable part of this disease, but we will still do everything in our power to prolong as many as possible. He recommended that we get him fitted for some AFO’s (ankle foot orthotics). We are waiting on a call from Sanford Healthcare Accessories to get that ball rolling.

 

We are sad.

 

We participated in the Fargo Marathon festivities a few weekends ago. I had intended to take Levi with me for the 5K, but it ended up being way too cold to have him outside. I walk/jogged it with my sister and James. It was a lot of fun despite the cold. Kyle ran in the half marathon bright and early that Saturday morning. We had a little bit of difficulty that morning, and it was really disheartening. We found the wheelchair accessible area and it was filled with people who seemed to be walking just fine. We fought our way into that area with Levi in the Kimba. I stood behind his chair and fed him snacks from over his head. As if that wasn’t bad enough, people began to use that section as a hallway which completely blocked Levi’s view of the race, and eventually people just stood right in front of his wheelchair. I was appalled. I have a polite letter in the works to both the Fargo Marathon organizers and the Fargodome. In the meantime, let's all strive to be courteous to others. :)

 

We are disappointed.

 

 

A benefit was held for Levi on May 16th. To say it was amazing would be a huge understatement. It was the most fun we have had in quite awhile. There were inflatables, face painting, games and crafts for the kids, a silent auction, a bake sale, a meal, and a dance party. Levi even got to go down the inflatable slide a couple times with Mommy and Daddy! It was a fun time for our family and, I hope, for all of the other families that shared it with us. I have to be honest though, it was difficult and awkward being on the receiving end. I would much rather be the one scurrying around behind the scenes. Levi, however, didn’t feel the same way. I think we have a little extrovert on our hands! He was absolutely loving all the attention, and very few things make me happier than seeing a smile on his little face. He has more to frown about than anyone I know and yet, I see him smiling more than anyone else I know! I am learning a LOT from him, and I hope you are too! Thank you to all of those that had a part in providing this fun day for our family.

 

 

We are grateful.

 

Some quick details of the past month:

 

-We are still waiting on the mask for the bipap. The one we currently have he absolutely hates, so we have given up trying until we have the one that fits better. We are scheduled to try a new one this coming Friday.

 

-His jogging base for the Kimba came in and he loves it! Jogging with Daddy will become a regular part of his life. Our goal is for him to start completing half marathons with Kyle.

 

-People have been working on some adaptations in an attempt to help Levi self-feed. We now have a little “skateboard” made by the Kemps and his OT is just finished up a bib-like ramp as well. We also discovered that he will drink water from a camelbak, so we got one that reaches his mouth while just sitting on his Kimba tray. Emily made handles for it, and we will continue to work on helping him to use it independently. 

 

-We were approached by someone at Sanford with information from the Make-A-Wish organization. Levi will not be eligible until he is 2.5, but this person wanted to make sure we were aware that it was something that he will qualify for. We will research this more in depth as he gets older.

 

-An online giving account has been set up in Levi's name. We are so thankful to all those that have contributed. We have a couple big purchases coming up in the next year, and we appreciate any help that people are willing to give. www.gofundme.com/levishope 

 

-Levi has become really interested in the birds that fly around outside (and into - haha) our windows. We plan to get a nice setup of bird feeders right outside that he can watch. He also loves to hear them sing. Just yesterday, James said, “Levi, do you hear that bird singing?” Levi nodded his head, listened, and when the bird stopped singing he said, “Thank you.” He is such a little sweetheart. 

 

Our last piece of big news is that Levi was made an honorary member of the Barnesville Fire Department!! Here he is posing in his new "duds". His helmet is a genuine firefighter helmet that has been used in a fire. A friend of his Uncle Ryan even painted Levi's name on it. Levi was very happy to recieve this gift and thinks that his helmet is pretty cool! We feel very honored by this kind gesture. Next time we are in Barnesville we will be taking our little firefighter to his station. :)

A well known verse has been repeating over and over in my head lately. I'm sure it is one that many have heard and could probably say from memory.

 

"He gives strength to the weary
    and increases the power of the weak.
Even youths grow tired and weary,
    and young men stumble and fall;
but those who hope in the Lord
    will renew their strength.
They will soar on wings like eagles;
    they will run and not grow weary,
    they will walk and not be faint."

Isaiah 40:29-31

 

It is our prayer that Levi will soar on wings like eagles, run and not grow weary, and walk and not be faint. We long for Levi to know and love the Lord. We want him to serve the Lord with whatever days he is blessed with here on Earth. Please join us in our prayer for Levi's heart. Not only for his physical heart, but for his spiritual heart. We pray that through his story many other hearts are won for Jesus as well.

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