Mar 31, 2014

Habits & Beliefs

Some people believe that whatever you believe about your own life, the universe will give you experiences that are in line with your beliefs. It's a scary thought. I feel like I am always too busy to do what I want to do, instead I often find myself doing what I think I should be doing.

Mondays are a hopeful day for me because it represents a fresh start. Whatever was going on last week can be changed with the beginning of a new week. Like New Year's. Every week. I guess some part of me is an optimist, or a fool.

The reality is that if you do the same things in life you get the same results. We all have daily habits. Ways of doing nearly everything. Sometimes our habits are in line with our goals and sometimes they aren't. Sometimes they are, some of the time, but they also hinder us when we do them too often or at the wrong times.

There is one particular habit that I've had for awhile that is a great illustration of this point. I clean and tidy. Each day when the family leaves I start to tidy up their messes, make our bed, wipe down the counter tops and whatever miscellaneous cleaning needs to be done. My house isn't immaculate or truly clean all the time but it is tidy. I take care of e-mail and a few "family business items" and hours have passed. That's another subject though.

It wasn't always that way. When I was a child I was incredibly messy. To the point of it being nearly impossible to walk through my bedroom. I never made my bed. My mom told me she decided that she didn't want to be a nag (interesting parenting strategy don't you think, I didn't know that was an option) so I pretty much lived in this mess my entire life. Cleaning wasn't important to me. At all. And I didn't develop any good cleaning habits, as you can imagine. Most people would find that really hard to believe that I was a slob, but ask my sister, or my oldest friends and they will confirm what I say. I really was.

When I became a young adult I realized that people general prefer clean and tidy environments. I'm sure there were some boyfriends that were turned off by my housekeeping skills. That alone didn't inspire me to keep a clean home. I had a busy social life and really only cleaned and tidied when I had the time. Sometimes my apartment was clean but most of the time it wasn't.

Fast forward.....I had kids and quickly realized that you had to have some kind of a system to deal with their toys and messes or your house can quickly become overwhelmingly messy with no hope you'll ever catch up. And there is a good chance you'll seriously injure yourself stepping or tripping on stuff. Even then there were times that my house was a mess, especially if I was busy with some project or another, which I often was.

Then Ainsley was born and in entered nurses into our lives. Strangers coming into our home, using our space while we slept, to keep our daughter safe and cared for. That was when our habits shifted the most. In the same way that we all make an effort to tidy and clean before we have company, now I had "company" every day.  The reality is that most families in this position (having a medically fragile child) give up and the nurse(s) becomes like family and they don't care if their dirty underwear are on the bathroom floor. I do realize that. That is probably the way it should be.

Now my habits are so ingrained that they actually get in the way of me being able to do other things. I can't tell you how many days I've said to myself, "I'm going to do X, just after I clean up Y.", even though I told myself I was going to let it go and just do what I had planned. It is interesting to me that something that most people consider good, can in fact be a problem and get in the way of achieving other goals.

I have plenty of other habits that I'd like to change. My point is just to show how our habits really can shape our lives. How else could a slob become a neat freak? I don't necessarily have a problem with the fact that my house is pretty tidy most of the time. If aspects of my life are going to be a mess, that is one area that I'd prefer not be.  People tend to think that if you look like you've got it all together, then you do have it together. Plus visual clutter can lead to mental clutter and my mind is cluttered enough already.

The biggest area I struggle with in life is time management. When people have more to do than they have time, how DO they manage their time in a way so that the most important things happen consistently? I know I am not the only person to struggle with this. In our modern life this is still a problem for even those who are the best at managing their time. If you are one of those people please give the rest of us your tips. I really do think they should teach Time Management as a mandatory subject in school...Anyway...

The second part of the problem is that when things start to get a bit less busy then I take on more. I guess this is that universe aligning to our beliefs part. Often I'm not even aware I'm doing it, like last month when I agreed to photograph 3 events for Evie's school and then make a photo sharing site for the school. (Though it does fill my required volunteer hours.) But other times it seems to come from above. This weekend Steve and I agreed to take care of some paperwork sorting. No excuses! It was going to be finished by the weekend so I can finally get the boxes out of our TV room after so many months. We were making our way through and I was hopeful it would happen. BUT. Then IT happened. The thing from the universe to make my experiences align with my belief that I am too busy. One of our children was found to have a parasite. The kind that is instantly on the top of the list and you can't put off dealing with. Instead of finishing our project I was driving all over town on a Sunday night to get a very difficult to find medicine. Today I am disinfecting the entire house instead of organizing my stuff and creating the time management plan I intended to work on. I think I'm going to try a new belief system and start repeating the mantra "I have nothing but unlimited time to do all the things I want to do." a hundred times a day. I'll let you know if it works.

Mar 27, 2014

Shine On

So apparently part of why I was feeling so drained when I wrote my last post was that I wasn't just "not 100%" but was hours away from having a 101.7 degree fever with muscle aches. I curled up in my fur blankets while Ainsley watched a video and accidentally fell asleep at 8:00pm (the earliest I've been asleep in YEARS!). Steve woke me when he came in at 8:15 after picking Evie up from ballet. Thankfully I never vomited like Steve, despite all the stomach grumbling I've had. I went to bed and slept until I had to get  up at 6:00am to get Evie ready for school. Steve had already left on his business trip to California. Thankfully I was feeling much better by then and I was able to go to the school to take head shots of the kids after all. I need to have the photos edited and submitted by the end of the month. Even today I'm not 100% but at least I can function, and Steve returns tonight in time to catch the end of Adrian's baseball game.

Ainsley had a good endocrinology appointment yesterday and it was determined that the symptoms she has haven't progressed significantly and unless different symptoms arise we have no reason to go back. I'm always happy to eliminate a specialist!

Spring is nearly here in case you haven't noticed. Adrian wanted to go look at Easter stuff. So often I feel like I have to say no, so I decided to say yes. And yes again when he wanted to buy Spring Oreos. We had them for a treat when we got back from picking Evie up from ballet (she dances twice a week.) I love when simple things make the kids so happy! Oreos were a treat we never got as kids (not healthy enough).

Once upon a time I wanted Ainsley to eat so badly (she couldn't) that I said that if she ever wanted to eat lard I would let her. I thought Oreos were filled with partially hydrogenated oil, but I guess they aren't. Only some high fructose corn syrup which I can live with. So maybe we'll be having Oreos more often since SOMEBODY, it turns out, LOVES them!




Deliciousness!!! She ate 3! Mixed textures and all.

I am SO INCREDIBLY PROUD of the progress she has made with eating! It is hard won, but worth the fight at moments like this!

Mar 25, 2014

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.

Mar 22, 2014

Craniofacial & Eyelid Update

Last week we had two important appointments with the craniofacial clinic and the occuloplastics surgeon. I've been wanting to blog but we had another round of illness hit our family (with all 3 kids missing school at various times), and I have been taking photos for Evie's school as well as adjusting to a new nurse (to replace the one who was fired in February for hitting her Ainsley in the classroom in front of a teacher and students) as well as dealing with important issues that have come up with the school . Unfortunately (or fortunately) I am not compelled to stay up late blogging like I used to. I function better when I get decent sleep.

Ainsley has had a bump on top back part of her skull, almost like a goose egg from a fall, except it isn't. She also has a depression at her left temple. Both areas have gotten worse as she's gotten older, especially in the past few months. This wasn't the first time I'd mentioned them to the surgeon. I've been concerned and was really half expecting that she would need surgery. Thankfully she doesn't. I found out that any minor bumps are unlikely to cause pressure or trauma to the brain (the brain is squishable like jello, it takes more than a small irregularity to cause a problem), and are likely irregular bone growth due to the fact that Ainsley's skull was cut apart and pieced back together like a jigsaw puzzle when she was a baby. The bone is all in different places than it was and likely the irregularity is caused by that.  Really it's amazing she looks as good as she does when you see the imaging.

They told us it is important to have her eyes dilated yearly to check for papilledema, or pressure on the eyes from the brain being under pressure. Good to know. Thankfully the ophthalmologist did that in January and her pressures were good. While I was there I discussed Ainsley's eye appearance and he could see my concern about the pinching in the corner of her left eye. We've been seeing more discharge from that eye for awhile, and the usual fix, tweezing out the inwardly rotated eyelash, didn't help.  I mentioned it again at the craniofacial appointment and it was agreed something should be done so we saw the occuloplastic surgeon. He agreed to do surgery to the left eye.

Then Tuesday night I found a large quantity of discharge that seemed to out come from behind her eyeball. I've never seen anything like it, ever. The next day it appeared she was far more able to open her eye. I have no idea for sure what was going on but suspect there must have been a foreign object in there for quite some time. It is hard to see because the opening of her eyes was made overly small during surgery (her palprebal fissure was shortened). None of the doctors fully looked inside her eye despite my report of unusual discharge, I presume because of how difficult it is to pry them open. Now I am concerned that the surgery we have planned may "over-do" things and I feel like it would be smart to go back to the surgeon to give him the opportunity to see her again before planning the surgery. I tried to write an e-mail to both surgeons and ended up spending several hours watching videos about the structure of the skull and looking at her imaging. I had no idea the skull was so complex. It left me feeling overwhelmed with even more questions. I learned that the sphenoid bone connects to the nasal cavity, and that makes me wonder if perhaps that may contribute to Ainsley's breathing difficulties since there was an abnormality of her sphenoid bone.  I decided to wait, and finish this blog post and the e-mail over the weekend. Sometimes you just have to preserve your state of mind.

Ainsley was said to be born with absence of the greater sphenoid wing bone (in her skull, but not the entire bone, just part of it) which was found when they took the MRI's to prepare for the cranial surgery. Absense of the greater wing of the sphenoid is extremely rare. However, by the time she was ready to have her second craniofacial surgery the bone had started to grow. In hindsight I believe that the sagittal craniosynostosis caused the sphenoid fontanelle to be larger than normal, just like it did the anterior fontanelle.  As you can see in the imaging below, a few months following her first surgery to open the sagittal suture all the fontanelles look quite a lot smaller. During the second craniofacial surgery bone was placed behind her eyes to keep her eyes from touching the dura around her brain. After this surgery her eyes appeared slanted and were very closed. This is likely due to the fact that bone was moved and her skin had been covering a skull that was differently shaped. Even though Ainsley' eyelid tissue was insufficient prior to surgery she was able to compensate and use her brow to fully open her eyes. After the surgery she was no longer able to.

 Sphenoid fontanelles and absence of the greater sphenoid wing.

 The sphenoid fontanelle after sphenoid growth. (Not surgically altered.)

My hope has always been that the surgeons could figure out a way to fix the results of that second craniofacial surgery. They have tried. She had brow prosthetics placed in Jan. 2010, a tarsal switch and canthopexy surgery in Dec. 2010, and a frontalis sling in Jun. 2012. The surgeries improved things some. Ainsley can function better, but her appearance is still not normal. I believe that if her eyes appeared now as they did when she was born, people would have a different impression of Ainsley and treat her differently.

In January when I was at Jack's funeral I was talking with another mom. Her son has had 30 craniofacial surgeries and was trached as well.  When I told her my child had sagittal craniosynostosis and showed her a picture she asked if she'd had surgery yet. It was a heartbreaking realization, that even an experienced craniofacial mom who knows what it is to have a child who looks different (her son was born with a hole in his face) cannot see that her work is finished, and in fact thinks it hasn't even started. It isn't a matter of her being insensitive as the surgeon suggested when I told him. It is the reality of the results from her surgeries. They do say that she has some extra skin on her eyelids that can be removed, but not until she is 14. How do I know that will fix things? I don't. How do I know that the surgery they propose doing now, won't look funny after the skin is removed 7-10 years from now? I don't.

I think that one of the hardest things about being a parent of a medically complex special needs child is making decisions for which there are no easy answers. You have to educate yourself and advocate for your child to get them the best care possible. I know many parents who have pushed doctors to perform surgery past what they were comfortable with (sometimes switching surgeons), and the outcome was exactly what their child needed.  But there is always the fear of making the wrong decision since there are no guarantees in surgery or medicine. The eyes are delicate and very important. They say the eyes are the windows to the soul. I just want to make it easier for people to see Ainsley's beauty like I do, and for her to be able to live the best life possible. That is what I always try to do. I will let you know if the surgery is going to happen or not as soon as we know.

Mar 5, 2014

Joy Among the Tedium

This week I happened to stumble upon this interesting article All Joy and No Fun: Why parents hate parenting. It got me thinking about why it might be that I can love my children so very much and yet not always love the job of parenting. This was particularly applicable for this week which has included far too much sickness, laundry and tedium. It's kind of liberating to know that research shows these feelings are normal and typical of the parenting experience. While expecting continuous happy moments may not be realistic I think a change in perspective and expectations can make space for more happy moments to emerge from the tedium.

There was a morning recently that Ainsley stayed home from school and required a lot of extra time and help to eat her breakfast. The light was beautiful as I sat with her at the table drinking my morning coffee. I could easily have been frustrated and rushed off to clean, answer e-mail or start a load of laundry since I was trying to make the most of my day, knowing I wouldn't be able to get out. Instead, this morning, I pulled out my camera. This was just one of the countless moments of parenthood and daily life that would otherwise disappear from memory had I not captured it with my camera. 

I think we are presented with choices more often than we realize. Yesterday Evie stayed home sick from school so I wasn't able to go to my Tuesday scrapbook gathering (my book is still unfinished). Despite being somewhat sick myself I was able to start some laundry and get some things done while she slept which was good. When she woke up she asked to watch TV in my bedroom. I was on the computer so I knew she didn't want to disturb me. Rather than send her off on her own, I made us smoothies and we sat together and watched High School Musical. It was an wonderful bonding experience that I could have easily let pass but instead will be a treasured memory.

Some day the kids will be grown and I will barely remember what made us so busy all the time. These ordinary days will seem full of magic when I look back at our photos. You hear of people reflecting back on their lives raising kids and they tend to view those times through rose colored glasses and as the best years of their lives. Yet I'd guess while in the thick of it few parents would want to believe that these crazy busy days are the best we will have in our lives....because they are hard. It must be that sometimes the hard stuff is the good stuff.

Ordinary days around our house this week.

Ainsley's Calliou and Rosie dolls spying on Evie's guitar lesson. So cute!

Homework blues.

Steve assembling the damaged table so we can donate it to charity, while I fixed dinner, and then hopefully we can get the table saga behind us and move on with actually getting a table. Funny how on any given night all 5 of us are doing random different things.  

Ainsley immediately curled up on the couch with a book all by herself to take advantage of our new lamp (We are still trying to finish decorating our space. I'd love to know what you think of the antler lamp below. Stay or go?). I thought that was awfully clever of her to hear me talking about how we can use it as a reading lamp in addition to a grow-light for the terrarium and then decide she was going to be the first person to try it out. I love it when she surprises me like that.

Family life. It's pretty awesome even if it doesn't have the power to make us happy all the time!