Cozy Corner Breakfast

I'm entertaining a 7 year old this week.  It's a lot of fun but remarkably scare in moments of profound thinking.  We have made ketchup and yogurt and kombucha and colored the porch and gone "to Japan" (Mitsuwa shopping center) and go for walks every day and and and - but we haven't stopped to think much.

I'm very grateful for someone to keep me company this week.  Last Thursday my parrot died in my arms.  The cockatiel died last month at the vet's.  And of course, Sam left me on November 17, 2014.  On Friday morning after Charley went to work, the house was so silent and devoid of anyone who needed me.  It positively echoed with loneliness.

So I went out to breakfast.  Here's a poem I wrote while being amused by the family at the next table.  Apologies to anyone who already read this on Facebook:


Cheerful, tuneless singing snags my attention
Baby singer jerks back in mock alarm and shouts "OH NO" aghast
Then giggles with delight at his own perfect imitation.

The cycle repeats.

Parent watch. amused, resigned and helpless
As the soundtrack of their morning 
Is replayed on an endless loop.

Good Parents

We just had our two eldest grandkids with us.  I realize I don't have a lot of parenting experience.  I was Ben's mom and I'm Sam's mom.  That makes two kids.  My two grandkids aren't a bit like Ben OR Sam.  (who is?)  I also spent decades teaching Sunday School for 2 and 3 year olds.  TnT aren't 2 or 3 any more!  They are 10 and 12 and they need a LOT of attention.

They live in Portland, OR and we live in Chicago, IL so although we love each other very much, we don't really know each other very well.  We felt each other out, gingerly.  I asked myself, "What do they need?" and they asked themselves, "What are Baba's rules and how seriously do we have to take them?"  

The answer to my question is limitless and the answer to theirs, apparently, is "not many and not very."  I told them I had only one rule: Respect.  We must respect ourselves, each other, the planet, other people, other people's things etc. etc. etc.  They thought that was pretty cool.  Only one rule!  And immediately began testing to see what that meant.  

What that one rule means, as it turns out, is: constant, non-stop examination and discussion and reflection.   Is it respectful to oneself to allow one's sibling to annoy, tease or insult one?  NO.  Is it a respectful response to that annoyance to slug them until they cry?  Well, probably not.  Let's talk about this.  What would be a more respectful way to ask that person to stop?  Hmm.  Tough question.  Slugging just feels soooo good.  Well, how about if we change roles?  If you are teasing your sibling, how would you like to be asked to stop?  

This requires further conversation into the subject of "respect means actually honoring your sibling's request prior to getting slugged."

Then there's the question of bad language.  What words are appropriate for a pre-teen to use?  And why do we giggle so much when we think someone might possibly be about to use one of the forbidden words?  They arrived on my doorstep with a firmly ingrained list of forbidden words.  I assume these were decided upon at home.  Which adds another question to my list: What are the rules their parents feel strongly about that I should be endorsing, but with which I (as an aging hippie) have no real, personal connection?  So I have the silent, invisible presence of my son and his wife.  I'm trying to translate their rules into something understandable from the comments of my two astonishingly young grandchildren.  There's not a lot of mature understanding of WHY the rules are what they are and I suspect some of the rules are made up on the spot for the convenience of one or the other sibling.  I'm pretty sure, "We get to spend any money we find on the floor at the corner store" is not a rule in a household where they are very particular about what goes into their children's mouths.

Still, by the end of their stay, we were making some real headway into understanding each other's boundaries.  Our conversations were getting shorter, I had only to shout, "Respect" several thousand times a day and seemed to be getting shocked and thoughtful faces and better behavior.  We had discovered our own acceptable swear words and there was a lot less giggling. These included, for example, "What the Cermak do you think you are doing?" and (for some reason) "Oh Howie Mandel, I stubbed my toe."  And we had established that money on the floor almost certainly fell out of GC's pocket and should be returned to him.  (Grandpa Charley)  However, money can be earned by performing various chores and ONE trip to the corner store a day is acceptable since a modicum of junk food is almost required when visiting grandparents and there's nothing in the house but salad and stuff. (Oh groan, Baba's food is BORING!)

What I never did seem to make headway on was a clear definition of truth. Truth for them is a very soft subject.  Their truth may be defined as "The story that is going to get me in the least amount of trouble."  They did learn to ask first.  My mantra was "If you ask, I'll probably say yes.  If you don't, I most certainly will say no."  They had trouble believing that no means no, but I think they were sort of getting that as well by the end.

  

I adjusted, they adjusted.  I think we are approaching mutual respect and understanding - which is a very nice addition to love!

Good parenting requires that you pay enough attention to your kids to know what kind of parent they need you to be today.  This is the reason why there are at least 365 different theories on parenting - they are each right about once a year.  It also explains why there are no perfect parents - no one can surf that shifting wave perfectly every time.

This Modern World (by an old woman)

What does it mean when your son says, "I love you mom, you are important to me.  You should follow me on Twitter."?  On the one hand, by reading his blog, subscribing to his videos and pictures on YouTube and Flickr and following his Tweets, I am privy to his passions and thoughts.  I, along with the rest of the world, can know him more intimately than I know practically anyone.  But he still won't return my calls or answer my e-mails.  It's a one sided intimacy unless I also tweet and blog - and he takes the time to read them.  Even THEN it's not what I would call a relationship.  It's more of a narcissist's version of relationship.  "I imagine that the whole world is more interested in me than I am in them".  I can think of lots of psychobabble reasons why this is good.  Self disclosure, "I" statements.  But there isn't a real two-way conversation, just two separate streams of consciousness.


While I appreciate that my talented, overstressed son has little time in his day to day life to chat with me, I still miss our long, rambling conversations about nothing at all.  Who am I kidding?  I don't have time for those either.  


It was a rare and precious luxury to have him here the past few days.  We talked about the relative merits of the Tennant vs Brannaugh Hamlets, of Pyrimus and Dido and Cicero.  We talked about the movie "The Tree of Life" (which he saw and I didn't because Sam was too loud in his appreciation of the dinosaurs.)  We translated French songs, discussed European linguistics and demise of critical thinking.  We played music, badly and he and his Dad (and Sam) tried to teach me syncopation.  I showed him my garden and he showed me his new android tablet.   These are discussions that take hours without children.  Neither of us often have that.  It was wonderful.  We didn't spend much time talking about our problems.  We didn't really need to.  I feel closer to him than I have in years and it's like a piece of my heart has come home.  He's gone back to Portland now, and I've got to get back to my real life.  So I signed up for Twitter and I am following Ben, and, at his suggestion, George Takai, Wil Wheaton, Stephen Fry, and the Daily Show.  


Blogs and Tweets are better than nothing.  But rambling, pointless conversations are better than anything.

Pureed Food Recipies

Sam's a "big boy" and doesn't like to eat baby food.  He wants to eat whatever I'm eating.  This is a bit of a problem because I like to chew and he can't.  He has dyphasia (swallowing problems) on top of that.  When he gets too much food in his mouth, or hoards food he can't chew in his palate, it produces an amazing amount of saliva which goes up his nose.  When he swallows liquid that's too thick, it clogs his nose and he just about suffocates.  We ordered him a milk shake once and I thought we'd lost him.  Not going to repeat that experiment.  He does like Wendy's Frosty with a spoon.  If it's too thin, it comes out his nose when he swallows.  Sometimes the food that is just right only goes half way down his throat and a couple of minutes later it comes out his nose.  Sigh.

Numerous swallow studies have not really given us a solid picture of what is going on or how much this is related to his ever diminishing lung capacity, but it's a pretty safe bet that something that isn't supposed to be there is getting into his lungs and clogging them up.

So I have to feed him very carefully, but it has to be attractive, nutritious and taste good.  Culinary challenge they don't often cover on the food network!  One bonus: calories and fat are not an issue with this boy.  I'm always trying to keep his weight UP.

Of course calories and fat are a huge issue for his mom who knows how to chew!  So my grocery cart is a very peculiar mix of high and low fat stuff.


But over the years I've discovered a lot of things that work for Sam.  Some things I can serve to everyone as is (which thrills him) and some things require some last minute adjustment for Sam, but still are essentially the same thing we are eating.  Sadly, most of the time he just has to put up with purreed whatever we are eating because I just don't have the time or energy to make it special.  But I try to make him food he enjoys.


If I'm having a sandwich for lunch, I put the same stuff in the food processor, meat (or baked tofu or whatever), tomato, pickle (lettuce doesn't work very well).  Then I add a goo factor.  He likes Kraft Olive Oil reduced fat mayo or that Italian sandwich mix (gardineria?) or ketsup.  (I like fancy mustard.)  I put in one slice of bread and mix it for 30 seconds.  It turns into a kind of sticky glop that holds it's shape.  Then I make breadcrumbs (often toasted) of the other slice of bread.  I roll tbsp bits of the filling glop in the bread crumbs and shape them into little rectangles.  Voila! Finger sandwiches he can eat with me.


Really fluffy pancakes can be eaten just cut up (not pureed) if they have enough syrup on them.  Cheese cake is the ideal desert.  Cake is not very smart as it crumbles and chokes him, BUT if you add some cream or other liquid it becomes Dulce de Leche and very soggy.  Perfect for Sam to consume with a spoon.  Looks like cake but doesn't crumble!  If you take Starbucks Classic Coffee Cake and pour mocha frappicino over it, you get something similar to Tiramisu!  (Be sure to ask the Starbucks Barrista to give you the cake on a plate!)


I recently tried a Butternut Squash Soup with variations that was a huge success.  I got the recipe from someone named Gabster Roolz on Cooks.com.  Here's my variation:


1 chopped sweet onion
4 cloves garlic
tsp dried basil (or thyme)
Some fresh ginger (about 1/2 a thumb's worth)
Evoo
1 cubed butternut squash
1 C chicken stock
3 C water
1 bay leaf
pepper
2 medium sweet potatoes
1 pt heavy whipping cream  (NOT Whipped Cream)


You don't have to chop the garlic and ginger very much since it will all get pureed.  Just peel them and chop coarsely.  Saute onion, garlic, ginger and basil in the evoo (extra virgin olive oil).  Add squash, stock, water, bay leaf, pepper and sweet potato.  Boil 20 minutes.  REMOVE BAY LEAF.  Puree the rest.  At the last minute add the cream.  The whipping cream adds a lovely bulk to this soup and makes it exactly the right texture for proper swallowing.  BIG hit.

The chef Simply Ming says that heavy whipping cream is different from heavy cream because they add something to it to make it whip up better.  I don't know but I did love the way the heavy whipping cream bulked up the puree and made it gorgeous.  Of course, I suppose I should have the soup without the cream and just add it to Sam's portion... 


Here's another thing, I've been reading labels and Carnation Breakfast Essentials has pretty much the same nutrition as Ensure or Boost.  It also tastes a LOT better and is MUCH cheaper.  You have to add a bit of Thicken or Thick-it to make it the right consistency, but it's still cheaper.  Sam consumes 3 or 4 nutrition drinks a day so this is really good news.

I don't know how you do it

I went to the 40th birthday party of a good friend last Saturday.  I had so much fun!  She is the single mom of a very delightful fourth grader.  I always enjoy these two because they obviously have so much fun together.  

There were two conversations I particularly enjoyed.  One was with  a single mom of two active boys and the other was with a step-mom who is writing a book about her experiences navigating the very tricky waters of negotiating child care issues with the ex and her new spouse.  I was delighted by the skill and wisdom of both these courageous women.

I had a great conversation yesterday with my wonderful DIL (Ben's wife) about the shock of having a 3 year old.  ("Even if you say Puleeeze, no still means no.")  She mentioned how much she loves Ben because he gives his time so generously and patiently to their three challenging kids.  I remember the struggle of raising Ben.  He was never aware that he had changed in any way.  In his opinion, he was always exactly the same person he had always been, but annoyed by my failure to "get" him.  Meanwhile, I had to scramble to adjust at least annually to this completely new person living in my house with new requirements and challenges for his faint but following mom.  

My brother Bil and his wife also have three kids.  The last time I visited, I was amazed at the skill with which she juggles, every day, the very different interests and needs of these three individuals.  When I talk to Bil, he talks about the stage of development and the needs of each kid in a careful, thoughtful way that shows he is aware of how fast they change and how carefully a good Dad has to pay attention.

I stay home all the time with my adorable Peter Pan who never changes, never grows up and has such a fragile hold on life.  We know way too much about medicines and hospitals.  We also know all the toys at Target and Toys R Us from infant to about 3 years old because in the last 29 years, we have purchased ALL of them.  Some of them twice.  Whenever I manage to get out I get such lovely compliments, "You are amazing.  I don't know how you do it."  Well, right back at you, folks.

I know that every one of these superheros has bad days and days when they doubt their ability to cope with the challenges life has presented them.  But they are doing absolutely amazing jobs juggling careers, relationships and the ever changing challenges of child-rearing.  I don't know how they do it.  I really don't.  They are each so incredible.


So hats off to Sue and Emily; to Sara and her family; to the brilliant woman whose name I forgot with the two boys; to Ben, Cher, Tasha, Tahreq and Zora; to Bil, Lisa, Jack, Faith and Will and to everyone else out there who cares about raising children to be responsible adults.


Actually, I do know how we do it.  We get out of bed every morning and try again because we love them.  Great job!

Robins

We have been honored to host a couple of industrious robins this spring.  I'm pretty sure it is only two.  They built a very messy nest over our back door and an incredibly perfect nest in the window box on the front porch.  The window is in Sam's bedroom closet, so we had a great view from in the house that didn't bother the robins too much.  They laid 4 eggs in the front nest first and three of them hatched.  It was just amazing to see them grow.  It seemed like they doubled in size just about every day.  

Our entire neighborhood was awestruck.  I could see them shushing their dogs as they walked by.  Several people told me that this was a sign of good luck - and they didn't even know about the nest over the back door!  The robins were pretty friendly while nesting, even letting me snap some photos.  I'm sorry to say, the pictures didn't come out.  But once the eggs hatched, they suddenly were not so friendly and began dive bombing anyone who came up the front steps.  (By a strange coincedence, "The Birds" was on tv that week.)  I began to think we could cancel our alarm system since we now have attack robins.  But Charley met one of them on the front steps and had a long conversation with it.  We assume it was the father bird since he seemed to have a Marine buzz cut hairdo.  After the man-to-man talk, they stopped attacking.  

Then one day the nestlings were so big I couldn't figure out how they all stayed squeezed into the nest.  The next day they were all gone.

Two days later, I noticed that the messy nest was occupied.  I discovered that I had a great view of this nest from my kitchen window.  Still no good photos.  Sam and I go out that door and I was a little concerned about the attack robin phase of robin rearing, but they didn't bother us.  They seemed to enjoy watching me with Sam. They would follow us as we walked from house to garage, chirping encouragement!  A horse breeder told me once that her animals seem to have an awareness that children with disabilities need extra gentleness.  I wondered if the robins knew that this was my fledgling.  Yesterday they all flew away from that nest.

This morning we noticed one fledgling on the ground in the back yard.  It seems to have "developmental disabilities".  The thing that amazed me was how hard both parents were trying to bring the fledgling along.  They just were not going to give up.  They were fierce about trying everything they could think of to help this last one get off the ground.  I was inspired by their determination.

I don't know what will happen.  Our back yard is a pretty safe place with plenty of stuff for a bird to eat while it takes extra time to learn to fly.  It looks like the parents know what they are doing.  

I have always heard that animals kill the "runt" of the litter.  It always bothered me.  This doesn't seem to be true for robins.  I'm rooting for them.  They aren't cold and uncaring.  They don't believe in survival of the fittest.  They are passionately trying to save this little one.  If they succeed in giving their runt that little extra boost, I'm sure they will be proud of themselves for years to come.  If the baby dies, at least they will know they gave it all they could and they did their best.  And the memory of the extra time they spent will be sacred.

I can relate.

Dysphagia

It's always a challenge to figure out what to feed Sam. He doesn't chew and he has all these aspiration issues. Food goes up his nose and down into his lungs if we aren't very careful. So I puree everything and thicken liquids. But he doesn't like food that looks different from everyone else's or is just plain grey and no fun.

Tonight we had Panda Express. You get two entrees and one side per person. So that makes 6 different entrees. I split them up so we each had a bit of each of these. I ordered one side of rice and two steamed vegetables. For Sam, I made a big platter with steamed rice in the center. Then all around the outside I had a little bit of all the different things we had. I ground them all separately and spooned them over the rice. It looked very fancy and delicious. Each entree had a little bit different color.

When something is too dry, I add a little bit of half and half and it gets nice and smooth. Calories are not his issue...

He was very interested and happy to eat with us!

Mom of a Kid with Profound Disabilties

Ok this is hard. It's the second week of Program/School and with my eternal optimism, I filled it with appointments for ME thinking I would surely be free to do things without my sidekick. Last week he only made it to program one day because his sleeping patterns are way off and he had too much fluid in his lungs.

Rosa, the aid in his room, is a very nice woman who is convinced I'm over protective since he is always healthy and cheerful on the days I take him. She always says, "See? He is FINE here. He LIKES it here. He ate really good and he laughed all day long." So I wonder if she's right. Maybe I should make him go more often. Plus, they only get paid on the days he goes and they are really hurting for money in this crummy state, so I feel bad about that.

Yesterday was all about me. I took him to Esperanza and went to have my hair done. It was awesome. I really love my new hairdresser and going to her is the ultimate luxury in my life. When I went to pick him up, he smiled dimly at me and put his head down and went to sleep. Rosa told me all about what a great day he had, but all I could see was his blue fingernails.

But I had an appointment at Costco to get my new hearing aids. So I took him to Starbucks, which he loves, and bought him some caffeine. That sometimes perks up his lungs a little until we can get him home and hook him up to the oxygen. Then we went to get my hearing aids. (Which are going to take some getting used to, but I'm really excited about. They match my pretty hair!) Then I thought we'd pick up a few things since we were there. He was NOT happy about this. He grumbled and complained all the way around the store. He also stopped to sample snacks at every station throughout the store. So I thought he was just hungry. We bought a minimum of stuff and came straight home. By this time he was making the very loud, distressed honking noise he makes when something is really wrong. But he wouldn't eat and he wouldn't settle down.

His oxygen was not that low but he did have a junky cough. What are they feeding him at school? Is he aspirating? Rosa says that he drinks a lot of tea. Is he aspirating it? Are they feeding him carefully when he eats so much? He doesn't really care how much he aspirates or how much food goes up his nose. You have to watch him. And he is already having trouble with his lungs lately. (Allergies? It does seem to be worse in early fall and late winter) Or is his "laughing all day long" actually that manic laughter that is really a desperate plea for help? He gets this weird out of control laugh when he is upset about something or really worried about something. Do they know that?

Bath, chest vibrator vest, nasal spray, nebulizer, chest PT, dinner, more chest PT. Nothing helps. 10PM I rip the hearing aids out. The honking is really getting on my nerves and I certainly don't want to hear it as loud as the hearing aids make it. 11PM still honking. Oxygen getting lower. I hook him up to the oxygen machine and keep checking. I put soft music on the IPod and hook him up to that, too. Still honking. 12:30 AM we're both exhausted. I notice he is rubbing his feet together as if they hurt him. Could it be Athlete's Foot? He gets that a lot. I put cream on his feet and he sighs deeply and changes his tune to his (also loud and annoying) going to sleep hymn. 1:30 AM still singing but much softer. I give up and go to bed.

So it's almost 8 AM now. I have to decide what to do today. I have a dentist's appointment. I broke a tooth almost a YEAR ago and I really need to get it fixed. I can't take him with me to the dentist appointment. He really freaks out when we go somewhere and I am the patient. He doesn't like knowing I'm vulnerable. Well, you can imagine why. He knows he'd be in really big trouble if anything happened to me! (There's another blog topic - what happens when something happens to mom?)

So obviously he was in major crisis of some kind yesterday. Was it a lung crisis or an Athlete's Foot crisis or both? He's sound asleep with his head hanging over the edge of the bed now which usually means he's having trouble with his sinuses. Do I get him dressed in his sleep, grab an Ensure, drive through McDonald's and take him to Esperanza? He will probably sleep most of the time. Or should I just let him sleep here and give him extra machine treatments at home? And reschedule the dentist - again.

AM I over reacting? Or am I UNDER reacting because I'm selfish enough to want a new, expensive crown in my head. (Hair cut, hearing aids and now I want a crown. And I don't even have a job! Next I'll be eating bon bons and watching soap operas) Magic thinking: am I somehow causing his distress because I feel guilty about being so selfish?

Well, writing all this out helps. The problem is that last night is a fairly common sort of night around here. So I get to taking them for granted. I think of them as practically "normal". But when you look at it objectively, what mother in her right mind would send a kid to school after a night like that? It really doesn't matter what Rosa thinks of me, I'm in charge and I'm supposed to be the expert on Sam. Sam is my job. The buck stops here.

I am so grateful for my dentist and his wonderful receptionist. I know I can reschedule and they will be understanding. I need to give Sam some extra treatments today and watch him to see if I can figure out what is going on. The crown can wait. Again.

Sam's Health Issues

I spend a lot of time and energy pretending we're just like everyone else. Sam may be short, but he's other wise normal. But that's just denial. It isn't normal for a mom to change her 27 year old son's diapers for one thing. It isn't normal for a 27 year old son and his mom to have such a GREAT time singing along with Elmo. Every year we have what's called a "Staffing" at Esperanza and it starts with a conversation about his strengths. The first thing mentioned every year regardless of who is participating is his smile. He really warms a room. The second is usually something about his delight in buttons and things that vibrate.

He misses about half of the school year because I just can't get all the things balanced that are required to keep him healthy. So just for a minute, I'd like to "go public" with what I have to do every day to keep him going. First of all there's food. I have to puree every thing and thicken most liquids before he gets them. But he doesn't like baby food or food that looks or tastes boring. So I have to figure out ways to make pureed food look good. We also go out to dinner a lot because he always eats well at restaurants. There's a limited amount of things he can eat at restaurants. He usually has a cheese omelete and pancakes drenched in butter and syrup. I make sure he gets 3 Ensure or Boost a day.

I change him, dress him, brush his teeth, wash him and clean up his messes. I try to figure out things to keep him occupied besides watching videos and sitting on his bed all day with a vibrating toothbrush. He WILL sit on his bed and drool with a toothbrush unless I motivate him to do something else.

His medical issues require several machines to keep him going.
First: Sleep Apnea. He needs to get at least 4 hours of good sleep in every 24 or he will get very sick. Unfortunately, it's usually somewhere between 4 am and 1pm. I've been trying to adjust this pattern his whole life with only partial success. We tried all last year to get him used to the bi-pap machine in the hopes that this would help him sleep more. I tried putting it on him when he went to bed. He would wear it until I left the room. I tried putting it on him an hour after he went to sleep. But that meant staying up until he went to sleep. And he doesn't go to sleep until early morning. So I tried going to bed and getting up at 4 am and putting it on. He wore it for a while, but it was always off when I got up at 6. So I tried putting it on at 6. This worked for awhile. But eventually he just started getting up at 6 with me. So I went back to getting up at 4 and he got so he would rip it off the instant I put it on him. I leaving the machine (which is very loud) on with out putting it on him for a couple of nights and then putting it on him again. But he still took it off the minute my back was turned. I started seeing snakes in the corner of the room and crying at nothing at all and basically losing my mind from lack of sleep. So now I check his oxygen at night and if it's low, I put him on oxygen all night. He tolerates that okay. I also check it at 6 am to be sure it isn't low. It is usually fine. I want it to be between 89 and 95. If it gets too high, the brain thinks it can stop breathing and that makes the CO2 levels go up.

The biggest danger from sleep apnea is the CO2 blood level that develops which can actually kill you if it gets too high. He recently had an arterial blood gas test which showed that his CO2 level is the same as it was a year ago. I think this means that there's no point in continuing to try to adjust to the bi-pap machine and I'm going to ask the doctor if we can get rid of it. Then we can go back to the same problems we've had his whole life - which in retrospect were better than this last year when I was trying so hard to fix them! I think his CO2 levels have been gradually rising over his entire life and we should continue to monitor them. When and if they get significantly higher, we'll re-address the bi-pap machine and even consider a respirator that connects to his throat at night.

Second: Bronchiectsasis. He frequently has so much mucus that he can't breathe and gathers in huge quantities in his lungs making it difficult to breathe and easy to develop pneumonia. This is not cystic fibrosis but it is very similar. We don't know why he develops so much mucus. We have a number of machines to address this problem and they must be done in the morning when he wakes up and at night before bed and sometimes when he gets home from school. Going through the whole routine can take 30-45 minutes. But even when I do them faithfully, he still gets too much mucus sometimes and then I have to keep him home to monitor him. We have a nebulizer through which we give him medication to open his lungs up and make them stronger. We have a nasal wash machine and we have a chest vibrator that was developed for children with cysctic fibrosis. We also do a lot of manual chest PT. We have a suction device to help when he's got stuff stuck in the back of his throat. (Mostly mucus)

Third: Aspiration and swallowing difficulties. We had a swallow study done this summer and discovered that WHEN HE IS FED CAREFULLY he doesn't aspirate food. Obviously, aspirating food into his lungs is a very dangerous thing because he already has challenges in his lungs. HOWEVER if he is given thickened liquids or liquids in a commuter mug or sippy cup and purreed or very soft foods, he doesn't aspirate. Cake and donuts must ALWAYS be made soggy before he eats them. He must not have anything "crumbly" because it is easy to aspirate. There is a Mexican cake called Dulce de Tres Leche that is the perfect consistency. I always think of that cake when I am adding liquid to his cakes. For example, when we go to Starbucks, I order him a Traditional coffee Cake and a Mocha frappichino in the bottle. Then I pour the frappichino into the coffee cake until it is soggy. It tastes like Tiramisu and he can eat it just fine.

Food does go up his nose if he has more than about a teaspoon full of food in his mouth at a time or if it is the wrong consistency. This means more mucus, infected ears and possibly aspiration into his lungs although this has not been seen in the tests. Again, careful monitoring of his eating is essential. We are considering botox treatments to decrease the amount of saliva in his mouth hoping that helps. But insurance may not pay for it.

So he gets sick when his lungs are compromised by aspiration or just an accumulation of mucus or when he hasn't been getting enough quality sleep. He also gets sick when his weight goes below 75 pounds. (This makes my grocery shopping odd - I buy low calorie, low fat stuff for me and the opposite for him. And try not to eat his food!)

I also take him to Target and we look at stuff for hours and then we meet Eileen at Starbucks. See, it's not all work and no play!

Okay. So I've said it. Now I'll go back to pretending this is just a lot of fun.