Well, it appears that summer has come to an end. As such, we decided that it would be an appropriate time to give a little update about all that summer has entailed for Mr. Levi.
Levi had his biannual checkups with both the cardiologist and the pulmonologist. We continue to be impressed by his care team, especially the cardiologist. He has done his homework and has taken the time outside of our appointments to learn about Levi’s disease. He answers all of our questions in a way that is easy for us to understand, and he has said on more than one occasion that he is happy to see Levi anytime if we feel that there is a need. His pulmonologist was open to our ideas and research into what equipment is needed and what is not, and therefore, our daily routine has gotten much easier!
Levi has really improved with his bipap. He now wears it every night before bed for about an hour and a half. We are so grateful for this positive change. Our hope is that one night he just falls asleep with it on. He did agree to wear it all night one time. However, as we watched him in his monitor it was very apparent that he was having a hard time maneuvering, so we took it off. We didn’t want him to create a negative memory of the bipap since things have been going so well.
The power wheelchair has arrived! It is at Altru, and Levi gets to drive it every Friday when we are at therapy. Altru has done an amazing job on fitting a headrest specifically for his needs. Last Friday was the first time that he didn’t need to wear his neck brace while driving. We are so grateful for their persistent attitude. That kind of attitude fits very well into our family. As soon as it is fully fitted to Levi and I understand how the chair controls work we will bring it home!
In order to accommodate the power chair we now have a lift in our garage and have purchased a new vehicle. We were given a VERY generous gift of a lift for the back of the vehicle. Levi’s therapists want him in a carseat for as long as possible, so the lift will place his power chair in the back of our suburban. We have plans to have that installed next Friday.
Our next couple of steps are to have a lift installed in the house to take Levi up to the second level and to add another garage stall to our home. The current garage is not very big, and when we added the lift it made one of the stalls unusable for parking. The state approved some assistance for the lift in the home and for that we are extremely grateful. Both of these projects will be started (and hopefully completed ;)) this fall!
We have also started a small amount of respite care. A couple of dear friends have offered to provide this service for our family. Our gratitude for their generosity cannot be properly explained. Levi thoroughly enjoys his time with these women and cannot wait to go back. I got to hear ALL of his stories about what they did. These breaks are so beneficial not only for me but for Levi as well.
Levi will be running with Kyle next Saturday in the Grand Forks half marathon! They are both very excited. Levi LOVES running with Kyle. The Grand Forks Herald published an article about our family today. I will post a link at the bottom of this page if you would like to check it out.
We are so humbled by the support that we continue to receive from our community. We cannot thank you enough for your continued prayers. There are many hard days, but one look at that sweet boys smile can instantly brighten my world. We are praying that the Lord continues to guide us on this path that He has for us.
“Many are the plans in a person’s heart, but it is the Lord’s purpose that prevails.” Proverbs 19:21
GF Herald Article - CLICK HERE