A Day In the Life

Today was a day filled with Ainsley. Many days are like this. Sometimes I forget how much of my energy is directed toward her care in one way or another. Then all of a sudden it will hit me. Today, like many other days, Ainsley had a doctor's appointment. Nothing major, just a dermatology appointment to have some moles checked since there is a strong history of cancer on Steve's mother's side of the family (sadly she died of cancer in August of 1994 after battling it her whole adult life).   Even though we have nurses in the home I still do quite a bit to help get her ready for school each day. Today the appointment time was 10:00 so we went directly to the hospital but weren't in a huge rush.

The appointment went fine and they were on time. The dermatologist checked the most concerning mole with her special magnifier and said it appears benign, as in fine. Not cancer. As far as appointments go this was the easiest kind. No procedures. Nothing scary. No sticks. No long delays. Hooray! They told me what to look for and we only have to go back if something changes. I was so happy she didn't need a biopsy!

While we were there I visited the therapeutic office to find out what was going on with the order of Ainsley's new wheelchair (a 14" Convaid Rodeo). Sometimes I have to follow up with the professionals to make sure stuff gets done. (Ha ha! That's a joke, just in case you aren't the mom of a medically complex kid, in which case you knew that!) The equipment guy got the quote over to the office last Monday but the gal didn't get it processed before she left, for a 3 week leave, 2 days later. But I saw a person, face-to-face, so with any luck that will get the ball rolling. By coincidence I also saw the PT who worked with Ainsley last year and she said she could come see her again. Bonus! Check, check, check! Love checking stuff off the Ainsley to-do list!

The funny thing is that Ainsley, after ONE time, remembered me buying her a treat after a (not so pleasant) appointment. Today she pointed to the elevator to go to the cafeteria (Come to think of it she asked after her Craniofacial appointment too but we had to say no because we were running late to meet Adrian.) as a way of asking. I knew EXACTLY what she wanted. Another bag of Doritos. She really is her father's daughter, but she had to look at all the other choices first, so I guess she is her mother's daughter too. 

At the appointment they weighed Ainsley and she is currently nearly 57 pounds. Her weight is down a bit from being sick. I didn't want to give too much information in my last blog post about the craniofacial appointment so I saved part for this post. At that visit we saw the dietitian for the first time since transitioning Ainsley to oral feedings. I'd e-mailed her and the doctors so they were fully informed so I knew they wouldn't be surprised. The truth is I'd been nervous that they were going to want us to make changes. They didn't. Ainsley is 4' 2" tall and that puts her BMI at the 48% which they were happy with and it is on par with her siblings. Even so, I would ideally I want her to gain back some of her body fat. So we are monitoring her eating very closely, since she regressed a bit from being sick. We did supplement with formula while she was sick and recovering. I knew it would set her back but she needed it. This week we cut the formula out again and she is eating much better. We are so proud of her! It's been such a long road!

After dropping Ainsley off at school I checked in on the Cerebellar Hypoplasia support group. The parents there can't agree on whether or not Cerebellar Hypoplasia is even a diagnosis. It is. I double checked with the craniofacial doctor (after the neuro-developmental pediatrician didn't e-mail me back) just in case everything I knew to be true was wrong. It's not. It's sapped a lot of my energy and just goes to show how little information there is about this rare condition. I've been planning to write an entire post just the subject of the cerebellum, so look for that in the future. 

Afterward I unpacked Ainsley's medical supply order and reflected back on how daunting this stuff was 7 years ago, and how crazy it is that all these things are a part of my everyday life.  I don't think I've posted pictures before, so I thought it might be a good time to do that. I always wanted Ainsley's room to look like a room and not a hospital room, which I think we did pretty well. 

This is where we keep Ainsley's pulse-oximeter that monitors her blood oxygen levels while she sleeps, to make sure she stays safe and is getting enough oxygen. The other piece of equipment is a humidifier machine that humidifies the air that she breathes while she sleeps and breathes through her tracheostomy. The bag on the wall is the inhalation water and normally a toy hangs off it to make it "less medical" but I was changing out the bag. The cork board has emergency instructions on it for CPR to a Trach and signs of respiratory distress, but also has pictures of Ainsley and how far she has come.

Lately our pulse-oximeter has had probe errors where the probe stops working and then alarms until you disonnect and reconnect it. Usually at 11 and 4am.  These probes are for sensitive skin and insurance will only pay for 2 per year since they are technically non-disposable the trouble is they aren't lasting 6 months. I'm not sure what they expect us to do. It's terrible to feel like you can't use your supplies when you need them even if it means being woken up every night. Switching them out helped, thankfully.

We keep the bulk of our medical supplies in these totes in the closet (two are duct taped together to create an extra large tower).

I'd hoped to finish this post before the kids came home, but didn't and then Ainsley had to finish eating her lunch. I bribed her with the left over Doritos. Then had her start some worksheets while I started dinner and Steve took Evie to ballet even though he vomited at 1 and 5am last night. Ainsley had foot pain at 6am. My stomach has been grumbling all day and I've been achy. I'm exhausted. And tomorrow Steve is traveling to California on business and Ainsley has another appointment with a specialist. I'm trying to decide if I also have the energy to finish the head shots for the school before the appointment. I don't. But it needs to get done. Later tonight I should force myself to squeeze in Ainsley's stretches and exercises. Now that she isn't sick we are working those back into our nights. Then I'll sit with Ainsley to make sure she eats enough. Many nights I'm just drained by the time I get to sleep, especially during cold and flu season when I'm almost always a bit less than 100% well.

Although Ainsley has a lot of needs, there are a LOT of kids who require this much care, or care of a different kind that is more demanding in certain, different ways. Days like today when I'm overwhelmed with her care I try to find something to be grateful for, like that we don't have a bunch of meds to give, breathing treatments, she doesn't need a ventilator, isn't frequently in the hospital, and she hasn't needed much in the way of surgeries lately (the last one was nearly 2 years ago). Then I think of the SN moms I know whose children have passed away, and they miss their child so much that they even miss all the medical stuff. That's the thing, how you feel about your life can really be improved by a shift in perspective. Sometimes thinking this way feels like a silly mental trick, but it isn't. We all have the power within us to change our perspective about the hand we've been dealt in life. Though it can be difficult when you are feeling drained. So tonight....I'm not going to squeeze in reading. I might not even do her exercises. I'm not even going to pretend I'm going consider finishing the letter to Ainsley's surgeons that I didn't finish over the weekend or finish reviewing Ainsley's school transition methods. Hopefully we'll get more good news tomorrow at the Endocrinology visit and I will be feeling better after a good night's sleep. 

Tomorrow is another day.