A day with SMA is very different than a day in a life without SMA. BUT it is also very similar!
Leo and I start our morning whenever he decides it is time to get up. This is usually around 7. Adam or I set up his iPad with Mickey Mouse and then begin his breathing treatment. This consists of manual CPT (chest physiotherapy) where we pat over all lobes of his lungs with a special mask. This helps break up any “junk” that might have accumulated overnight. We put him on an incline so gravity can assist with the drainage of the “junk” and run a nebulizer with saline to help thin things out. After about 25 minutes of CPT, we cough him. This involves uses a special machine that simulates a cough. Leo’s muscles are not strong enough to perform a productive cough. Thankfully, we have this machine that is able to force air in and out of his lungs and airway to pull the junk up. It is a process of cough, suction, cough, suction…rotate repeat basically until everything is up. We then do very typical toddler things! I wash his face, brush his hair and get cleaned up and changed for the day. I also change his linens, give meds, do eye care and oral care and apply daily oils.
We then migrate downstairs where Leo hangs out and watches a little Disney while I change his feeding bags and get a new feed set ready for the day. I then massage his legs and arms followed with stretching. This all takes at least an hour and a half. We then typically load up for an adventure, usually the park or zoo or another fun activity, or he has therapy and then we go out. It is usually close to or past naptime when we get home and I will take him upstairs for nap. He usually rests very well. He at least has two hours of being on his bipap whether he is sleeping or just resting. We usually spend afternoons at home walking down the driveway, watching the chickens or playing and working (on sitting up ect ) inside.
Bedtime routine is also about an hour and half or more and consists of another breathing treatment, bath, bedtime stories and prayers.
Adam and I are usually a good team and alternate morning and evening treatments around what the other person needs to get done.
On Fridays, Leo has therapy mid-morning and usually a busy weekend ahead, and we often spend the mornings at home. Today we walked the driveway, hung out with the chickens and played on the porch. Leo then worked very hard during physical therapy and also had a visit from his HME to check his respiratory equipment. I snuggled with him on the couch for a little bit before taking him up for his nap. Once Adam got home we all went to the grocery store and hung out the porch before going to bed.
We do have to spend a lot of extra time doing things that aren’t “fun”. Just going up and down the stairs, moving equipment transferring and getting set up takes a good bit of time. But we try our very hardest to make everything fun for Leo and to get everything we can out of every moment. Typical or atypical, it is our life, and it is so very normal to us. We are so very thankful for our typical days, because we never know what is around the corner.
No comments:
Post a Comment