Thankful

This is going to sound a bit shallow, but there really is more to it.

I am thankful that the fall semester is almost over.

In case you didn't notice, I haven't had time to write about anything this semester. The idea that we took on a bit too much is an understatement. We were all about Adam being more 'normal', and not needing as much in the world of doctor appointments and therapy sessions, and I got this idea that I wanted to do a half marathon.

This meant I had to run and work out, but mostly run. Philip is in grad school, and getting impatient with the slowness of finishing his program, so he decided to take 2 classes this semester. This is while we both work full time. Moreover, Phil had this opportunity to assistant coach varsity football- which he enjoys immensely and never could have done during Adam's first few years. He took the chance  and is loving it. If that's not enough, Matthew made the swim team, and is in a pretty competitive training group- which means swimming 6 days a week. Adam still takes part in structured meals and still needs to do all that meals encompass. His meals are a bit faster, and he gets rewarded randomly now- like a slot machine.

After the first week of September, I pretty much decided I was done. I was overwhelmed and have not been able to catch up since. I  keep saying the mantra "We can do anything for 3 months".

I bought a deep freezer. I try to spend one weekend here and there cooking a ridiculous amount of large meals (most contain cheese, but there are stews and soups in there) The laundry is out. of. control. I hope to catch up with that sometime in March. I did laugh a lot this semester, and I think the kids like having a messy basement. We did all get sick at some point, but we probably would have even without the stress factor. Holidays? Well, stores are open on Christmas Eve for a reason and I might just be that reason.

In Adam's world of special education- the school year went off without a hitch.

too tired

Ok, so we've been playing the  triangle game for a few days now. Basically we take 3 foods and put them in the shape of a triangle. Then we just touch the foods and applaud, clap, earn points, cheer, whatever after each touch for a total of 15 touches. When Adam does 12/15, we move on- but not till the next day. The steps are: touch, give it to me, hold it, touch your cheek, touch your lips, touch your tongue,  put it in your mouth and spit it out, put it in your mouth and hold it for a second then spit it out, then swallow.

We are only on step like 5 or something, but we are getting there. 

I'm also ridiculously tired and feeling a bit drained from all this. Maybe it's being around so many normal kids and the complaining stay at home mommies I am surrounded with by having summers off. I'm not sure. I wrote about this in my last entry and still haven't really shaken the worn out blues feeling I described. 

It's tiring always smiling with strangers. Saturday, I was at the town pool and Adam was playing with another little girl. They had the kiddie pool to themselves. I was sitting in the pool with them both and the girl's mom was away from the pool in the shade, I was watching them and the mother came over to me at one point thanking me for watching her daughter, but she couldn't sit near the pool because of the new baby. She was holding like a 3 or 4 month old baby.

She said, "It's so hard when they are at this age, I mean I just hate it, I can't take her anywhere in the summer, since they can't wear sunscreen at this age. It's ridiculously hard, you know. Well, thanks for watching Kaitlen"  

Me, 5 years ago, was like, yeah cool, whatever, I know what you mean. Me on Saturday faked it and said, "Yeah, no problem, I don't mind watching her" and I ignored the complaint.

Inside I was seething. Over dinner I vented to Phil, yelling and asking him if he knew when it would get easier. Like when will I not be angry. When will I not have to stop myself from turning on this mom and shouting at her, "Really, really? It's so f'in hard because you can't put freaking sunscreen on her? Try  3 summers with a hole in her neck, where you have to learn to take care of her, try never hearing her voice for over two years, no laughter, no crying. Try never leaving the house because of the tubes and monitor and nurses. Try feeding your child through a tube. When my son was her age, I had to insert a tube down his nose and check for placement with my stethoscope before I force fed him. Haven't you ever seen children in the hospital? Do you know how freaking lucky you are? You hate the summer because of  SUNSCREEN? " 

 And then to top it off, the insurance company denied a claim again. I can't even tell you how many times over the last four years they have denied claims, how many times I've had to contact doctors, file appeals, argue with them. It's ridiculous and very very draining. There really isn't anyone out there to help you with this. Last year was really bad with the feeding appeals and it really makes me upset. 

Well, in spite of the fact that Adam has been the same for years, I need to file another appeal. I am  honestly, really really worn out. It's not even a crazy denial, like it's not like the ones for his surgeries or extended hospital stays, it's just the denial that is breaking me. This is the one, the one too many, the one that is making cry. Enough already. You won. You won, insurance company.  I am done.  I am just too damn tired. 

Today I took Adam to a Bug Museum this morning. I was surrounded by more normal moms, normal kids.  Adam touched: a millipede, a tarantula, a scorpion and  a hissing cockroach.  I am wondering why he won't touch lasagna, tomatoes or corn on the cob. 

It's funny and ironic and I'm on the edge between laughing and crying... because I'm tired. 

summer means.. feeding camp.

It's summer. Reflections.... One year ago we entered the feeding program at CHOP. Adam was 100 percent fed through a tube. This was due to two plus years of having a trach and multiple surgeries to correct his airway.

We lived in Philly for 5 weeks, after intensive therapies, tears, fighting, tantrums (mostly mine). We left the program 50 % tube fed and 50% fed by mouth- we feed him.

This was huge, life changing, and incredible. It also felt impossible to sustain. We did it, but it seemed impossible- the schedule we had was freaking nuts (see Sept/ summer entries). I honestly don't know how we did it, it was crazy. We kept following up with CHOP every few weeks, changing things, increasing things, following them exactly, very strict protocols.

At the one year mark, Adam is now only getting one tube feed at night- one feed only. Just one. Just 300 mls, (30 mls is an ounce so that's like 10 ounces). The rest of his nutrition he gets by mouth- we feed him, but it's in his mouth. Following strict rules at meals. This spring, CHOP suggested that we start to find a closer to home program that can continue us along. They weren't being mean, they were just looking at long term- they will still see us.

So, we did. Today was our first appointment. The local feeding center is about an hour's drive, which is way closer than Philly and although we have all come very far in the last year, we still got some things to learn. Current goals:
1.  eat vegetables
2.  feed himself
3.  work on less structure- start to fade away reinforcers and prompts.

We came home with new lists, new instructions, suggestions for reaching these goals, new games to play with food in unstructured ways, and more.

I was feeling a bit overwhelmed. I was all kinds of down this afternoon, all kinds of man, when is this going to get better when is he going to eat why is everything so hard kind of feeling yucky. I had to go back and remind myself how hard it has actually been, and how easy things are now, compared to then. He IS going to get there. I will make sure of it.

 ADAM ONE DAY OLD

ADAM 4 YEARS OLD. MAD.

Just as I was feeling down and needed to remind myself- you people, you guys out there need to remind yourselves, too.

People, you got to be patient. Stop asking me "How's he eating? Is it any better? How is Adam doing with his meals? "

I know you are making conversation, but it's been YEARS. It will be YEARS of work. I am getting there, we are making progress.  Also please stop suggesting things for me to do. Please stop with the "my kids don't eat broccoli and you should let him be hungry and you should let him choose and you should sneak things in his food and make it a game and let him eat cookies and junk"

I would really like to turn around and say to you... well I probably shouldn't say what I want to say.

But...

When you suggest something to me, me- the person who has read countless books, met with experts in the field, worked with therapists twice a week for 3 years, spent five weeks with four therapies a day, is ABA trained, special educator. When you just flip a suggestion to me, you make me feel like shit. Your suggestion, your advice, which you probably got from some freaking 'child expert'  talk show guest, your suggestion that I should do what you did to get your own kid to stop eating CocoPuffs and have a banana, is unwanted. Your advice makes me feel bad. By being pretentious and self-righteous and thinking that you can help me, you hurt my feelings. Do you really think that I haven't tried it? Do you really think that you can help or are you just showing off your own parenting skills? Are you using your 'advice' to really just brag about how great you are as a mother because your child eats squash?  You are making me feel bad. Your "tips" show that you don't know me. You don't know all that I have been through and you don't care to know.  Your idea that I should "try stickers" makes me want to punch you in your face.

I feel better now.

Tomorrow we are playing a game with broccoli, carrots and corn.  I'll let you know how that goes.

sick, again.

The pattern this school year has been 3 weeks illness free, then bam, Adam gets something. I mean it's inevitable.

So, Adam was sick last week. He went to school on Monday and we got a call that at school he was coughing and they were going to give him his inhaler. By Monday evening, he was coughing almost constantly, with a fever, and a slight rash.

 I, of course, panic-I look up his symptoms on webmd and pretty much am convinced he has scarlet fever. Phil, thank goodness, is the calmer half of this team and we call the pediatrician, give him some meds and wait.

In the morning, the pediatrician sees him right away, takes a strep test, checks him out and concludes it's viral. We are now to increase his inhaler, but he gets worse as the day and night goes on.

We call his pediatric pulmonologist, who sees him right away. Adam is having bronchial spasms and needs more inhalers, allergy meds, and prednisolone. When we go to his pulmonologist's office, the doctor heard Adam outside in the waiting room and called to him.  Adam ran to him, gave him hugs. The doctor laughed and held Adam and they instantly were both laughing and smiling. This is an amazing doctor, who has been seeing Adam since he was in the NICU. It's great to have a doctor who Adam loves, advocates for him and who remembers all that we've been through and has been along for this crazy ride.

We keep him home for the next two days and a very low profile weekend.

Today, we got an emergency call from school-again. Adam has a rash and must be picked up immediately. We call the pediatrician, and swing by his office after picking up Adam from school. He's got contact dermatitis. Some benedryl and aveeno are needed.

At the pediatrician's office, the doctor feeds our ego, telling us how great Adam is, how wonderful we are as parents and how far Adam has come- saying that it is because of us, that Adam is doing so well.

I love doctors who make us feel better, respond lovingly to Adam, call us back and squeeze us in.

Swim lessons

Sorry no updates in Feb, but to be quite honest, Adam is the same eating wise. His routine is the same. No changes and we missed our Feb appointment at Chop due to crazy crazy snow we've had.

But..... we took him to swim class.

This was super exciting. Every night for the past two weeks, we've been "selling" swim lessons. We are all like, "yeah, swim class is the best! Adam, you are going to go to swim class soon, yeah!" and all kinds of cheering for swimming.

Yesterday was the day and of, course he didn't want to go. He cried and carried on. We drove him. He cried and carried on in the car. We got to the Y. He cried and carried on.

There were 4 kids in his class and 2 teachers. One boy was crying the entire time- the entire half hour. That boy was thankfully not Adam. Adam cried and whined in the beginning. I made him walk to the pool and put his feet in. The teacher talked to him and told him to get in. Adam refused. I went over and told him that he had to listen to the teacher. He had to get in.

Adam turned to me and yelled, "NO. NO I NOT GO IN POOL. I AM THE BOSS APPLESAUCE".

Ok, it took so much not not crack up laughing. I said to him that he was not the boss. And made him get in. This was so worth it. He started to relax and laugh with the teacher and have a blast. I took a picture of him and the guy in charge was like, "Um, Ma'am, you can't take pictures. We have a no picture policy."

I responded with a smile, " I totally understand, but I am only taking a picture of just him and I will not post it on the internet. But this is his first time swimming. He's only 3 and he was born 14 weeks early, weighed just over a pound, has had 7 surgeries, spent 8 months of his life in a hospital, had a tracheotomy and couldn't make any sounds out of his mouth for his first two years. I know you understand, that this is a miracle and I'm taking a picture."

He goes, "oh, uh...of course."

Anyway. I am a woman of my word and will not post this picture, but Phil and I were beaming and teary-eyed and so proud of our little man.

It's a new year. 6 month check.

Just having a moment to reflect. We have made some crazy good progress with Adam.  
Let's recap. 6 months ago Adam was completely fed through a feeding tube.

We spent a month in in intensive feeding program with 3 (sometimes 4 therapies) a day. Follow up appointments with feeding teams, sticking to the protocol, increasing new foods and amounts as directed.

Now:
1. He drinks 6 ounces of liquid 3 times a day
2. He eats 3 ounces of food 3 times a day
3. 6 months ago, he ate NOTHING. Now he will eat:

cheese
apples
applesauce
banana
green beans
broccoli with cheese sauce
chicken nuggets
spaghetti with tomato sauce
meatballs
yogurt (strawberry, peach and vanilla)
scrambled eggs
toast
waffles
french toast
crackers
chocolate chip cookies
pudding (banana, chocolate and vanilla)
peaches
pears
grilled cheese
mashed potatoes

Note: all of his meals and food is given in a structured meal setting, with strict rules and we feed him, he never feeds himself. However, this is HUGE progress (he is only tube fed at night now) and I wonder how much more progress he will make in 6 more months!