I have been meaning to update everyone for awhile now, but life has become even busier than normal - Levi is now a big brother!
Hannah Kay was born on January 19th. To say that she is adored in this family would be quite the understatement.
Also, if I am being completely honest, writing updates is painful. Therapeutic, but painful nonetheless. We are living in the everyday of this disease, and it's easy to get lost in that. Stepping back and looking at the big picture is difficult and frightening.
In good news, Levi finally has his pediatric wheelchair (his "Kimba")!! He absolutely loves it. It is fully supportive and allows him to be up with the rest of us. It also allows us to go out and about without worrying about his comfort. We do get a lot of looks but most of them are friendly, and Levi captivates many strangers with his killer smile. Who could deny him a grin when faced with such joy?? We are looking at getting a jogging stroller base for the Kimba so that Levi can accompany Kyle on his runs when it gets warmer out. We think he would really enjoy that time and fresh air.
We took Levi to his first MDA clinic on January 16th. We met with several different departments: physical therapy, occupational therapy, speech therapy, neurology, and physical medicine and rehabilitation. We also met an MDA representative and a social worker. Although we didn't receive any new information, everyone was very helpful with getting us referrals and equipment ordering started. The neurologist got us scheduled with both cardiology and pulmonology on February 17th. The physical medicine and rehabilitation doctor had him fitted for a neck brace, signed off on his stander so we could get that process started with Medicaid, and he wants to see Levi on a regular basis outside of this clinic. Levi will return to the clinic every 6 months.
We also saw a pediatric sleep doctor that day. He recommended that we have a sleep study done soon. Sanford doesn't have the equipment to do a sleep study on such a young child, so that is something that will have to be done at Mayo. We will travel to Mayo mid-April for that and his 6 month check up with his neurologist. Mayo has also scheduled an EKG, echocardiogram, and Holter test for that visit, but we hope to have those tests done in Fargo before we make the trip in April.
Nodak Electric was generous enough to approve a grant for a bath chair for Levi. We are very grateful for their help, and for all of those that round up their bill every month. We ordered the chair last night and hope to have it within a couple of weeks. This chair will allow him to sit up in the bath which will be more enjoyable for him. It also comes with a stand for the shower, so when we have his bathroom built there won't be any new equipment needed.
We have good days and we have bad days. Kyle and I both find great comfort in song. There is one song in particular that causes me to weep both in sadness and in gratefulness to our Savior.
"When confusion's my companion
And despair holds me for ransom
I will feel no fear
I know that You are near
When I'm caught deep in the valley
With chaos for my company
I'll find my comfort here
‘Cause I know that You are near
My help comes from You
You're right here, pulling me through
You carry my weakness, my sickness, my brokenness all on Your shoulders
My help comes from You
You are my rest, my rescue
I don't have to see to believe that You're lifting me up on Your shoulders
This song brings me sadness because sitting on Kyle's shoulders is something that our two older boys have always enjoyed, and it's something that Levi will never be able to do...
However, I am comforted by the thought of our Lord carrying our sweet boy with his joyful smile on His shoulders. He carries Levi's weakness, sickness, and brokenness while also pulling us through (which most days feels EXACTLY like what is happening). As hard as some days are, as much as we struggle and fight with God about how unfair all of this seems, as much as our hearts are shattered, we know that God is carrying us through.
Our most pressing prayer concerns right now would be continued good health for Levi. We also humbly ask for prayers as we find ways to include Levi in our daily activities. We are trying to teach the boys how to include him when they play, but it's not always easy to figure out a way to do that.
"You will keep in perfect peace those whose minds are steadfast, because they trust in you." Isaiah 26:3
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