could it be... getting better?

I am almost afraid to type it- I don't want to jinx it, but it could, just might, maybe be getting slightly better.

First of all, we went for our monthly appointment at the feeding center. We see a nurse, a nurse practitioner,  pediatrician, a nutritionist, and a psychologist. We see them one at a time and then they all meet in a secret back room and then they call me back in and discuss their conclusion and the team tells me what to do for the next month.

Last month's visit was a train wreck. I was so tired and as I was explaining our insane routine and how I never have time to play with Adam because we only spend four hours a weekday together and three of those hours are torturous in a strapped down chair in a feeding session , I started to cry. I mean really cry. I'm not real sure what the psychologist was writing but I'm pretty sure it was something along the lines of "kooky stressed out mother, needs meds"

Anyway, they got to see firsthand how his feeds are no shorter than in October and are still a constant battle. So their recommendations last month were to take away his control completely. We went to me and Phil giving him his food directly- feeding him, like he is a baby. He no longer gets to hold the spoon, cup, fork. Ever. At all.

At first, I was saddened by this step backwards, but it seems to be for the best. He no longer can throw the food all over the place and the only control he has now is that he still will hold food in his mouth and refuse to swallow it sometimes. There is no pattern to this behavior, it's not like he does it with certain foods but not other foods. Nope. It's like whenever he's in a mood, or feels like it- that's what happens.

Typically we give him about 30-45 seconds to chew and swallow. If he doesn't, then we give him the next bite- which sometimes results in all the food coming out of his mouth and he loses play.

So, last month's changes: caregiver feeds him all the time and we had to increase his tube feeds, he had lost weight. It was a bit sad.

But.....

This month's appointment. He is up in weight by 2 pounds, so... we can take away a bit of his second nighttime feed and increase his amount he has to drink in a structured meal. We are still giving him the feeds, but this subtle change is huge for us.

So now we will do:
6 ounces of Carnation Instant Breakfast with whole milk 3 times a day and 3 ounces of food 3 times a day. This is in a structured feed therapy session.

He will get tube fed 300 ml and then another 60 ml (this is 240 less! ) while sleeping.

We go back next month, so let's hope he continues to gain. He will if he eats outside of our therapies, like at school or snack or dinner with the family. The problem is that these meals are always leaving him full and he just ate, and is 3 , and wants to get up and move, not be made to sit more with us, but let's hope.

It feels like with him, progress is  forward moving but forward moving in a crazy zigzag up down,  eventually you move forward, but you spun around a bit to get there.

Adam's first conference

So a few days ago, I'm in line at Walmart, buying Christmas wrapping paper, Adam is in the cart and I hear, "Hey, Adam" from a little girl.

Adam hides his head and won't look at her. She is super chatty- telling me all about the following: she goes to the same daycare as Adam, is in his class, she tells me what she's buying and about all her visitors coming to her house, names them and I am overwhelmed by her articulation and how she is speaking to me.

Her father is with her and asks about Adam and I tell him that he is 3 1/2 and her father seemed kind and just remarked how shy Adam was.

On the drive home, I was sad. I don't know what it was about the encounter. Was it that it was a reminder of how "behind" he is, I don't know. It was unsettling. It was like my head started spinning and I was thinking that she's so advanced and all those normal kids are and then they're going to learn more and always be ahead of him and the matthew effect and all this crazy kooky stuff... you know when your thoughts just go all out of control and you're worrying about things that aren't real. Well, that was my car ride home.

Later that evening, we went to Adam's conference (not at daycare) at his preschool disabled class. His teacher had all wonderful things to say. Yes, he is really difficult to understand, but she told me that his receptive is age appropriate and many times she thinks that he is advanced compared to other kids with what he can do and what he knows. When you ask him questions, he knows all kinds of things, like all his numbers to 30, letters, his name, other word recognition, shapes, colors.  He can't tell you all these things, but he points and he can follow directions. She reminded me that he has only been able to speak for a year, his growth in this area is huge. He laughs and plays well with the other kids and is happy. Genuinely happy.

 He is learning all the time and I guess his first conference was  a snap out of my crazy kooky worry thoughts that weren't real. Because what is real is that he is perfect. Perfectly happy and so am I.

changes

It’s Jack White singing instead of Laurie Berkner. We’re driving down the highway on my way to pick up the boys at my mom’s. She took them for an overnight- and what a glorious overnight it was. I went to the mall and just looked at things- for fun. I went to the used bookstore and browsed, sipping tea. Picked up some wine and take out. Slept for 12 hours and went out to breakfast at noon. It was glorious.

I’m looking at many pickup trucks on my drive and smiling thinking of my old truck. I really loved that gas guzzler, I confess. It was a crazy impulsive buy, my second marriage was a wreck and I needed a new car. I had a plan before I went to the dealership, I really did, but it was love at first sight. It was way over my budget and was amazing. It was a red dodge Dakota quad cab. It was fully loaded, fancy wheels, bed liner, towing capacity, it had things I never used nor understood.

I loved that truck. I was in 2 accidents and never even felt a bump. No damage done to MY truck. Snow didn’t stop me. I helped people move. I was invited to Ikea by everyone I knew. I could throw things in it and just go. Matt and I would drive to the beach with our bikes, eat ice cream in the bed, camp and when my entire world was falling apart- it was okay. I felt safe. I had a truck. We could just live it in. It was total freedom to me. I was sexy driving it.  It was mine. 

Second marriage over. Four months into dating Philip and I was pregnant with Adam. We know what Adam’s infancy was like. The truck had to go. It was impossible to fit the medical equipment in there and those poor nurses trying to climb in and out of the truck was all too much.

I traded it in for…. A minivan. I know, the most unsexy car there is. It has a twenty-seven cupholders. There are outlets all over, which we needed for his suction machine. Oxygen tasks fit securely inside. There is room for emergency vomit bowls and a potty. The iv pole can stand up and feeds can happen easily. I can climb back and get to any child superfast with plenty of room for groceries , sippy cups, and soccercleats. 

Phil reminds me at least once a week while commuting in traffic that as soon as Adam is a driver, He will no longer have a car- insisting that he has a car because of the kids and feels the need to get rid of it as soon as possible. Which is fine with me, because this will give me more money to spend on my anti-minivan.  

The music is not the same in a minivan. Don’t misunderstand. I love my life. I love my problems and wouldn’t want to trade with anyone. They are mine and this is my story. But I think that the two days kid free made me appreciate the silence, my music choices and reflect on all the changes that make my story... mine.

Holy Feeding, Batman.

September was the month of trying to figure this whole thing out. Basically our life is crazy. I'm not saying yours isn't. I'm not saying I don't love my life. I'm not saying I win the craziest life award. I'm just saying.

In case you all were wondering how in the hell was this feeding protocol going to work out when school started? Well, the answer is.... it isn't.

As you recall, we spent all of July and part of August in an intensive feeding program in Philadelphia. This required that we relocated temporarily and devoted all of our energies when we came home in August to transferring this program to our lives.

They left us with the following instructions:
1. Adam needs to have at least 3 structured meal therapies each day.

This task has become nearly impossible. His therapies can only be done by trained people- me and Philip.  So here goes our crazy day:

SEPTEMBER DAYS

5 am- I wake up and get ready for work after hitting my alarm clock several times and cursing. for real.
5:45- I wake up Adam for the first time by bothering him
6:00- I really wake up Adam and he yells at me, kicks and screams "NO, I TIRED"
From 6:00 till 6:35am - Adam does a structured meal therapy session.

This therapy session is a train wreck. Typically he gags, coughs, vomits, spits milk at me. Several times I had to completely change my clothes as I was covered in carnation instant breakfast and vomit. He NEVER wants to play with me, no rewards ever work and when it's time for last bite, (this is where we give him the last bite and tell him that it's the last bite and when it's all gone and his mouth is empty, he can leave the table) he asks if he can go back to sleep when he's all done. I sadly have to tell him that he has to get dressed and go to school.

Also at 6:15am Matthew gets dressed and follows a to do list chart that I created for him. This chart lists all the things he must do, he checks them off and follows his list, careful not to interrupt "bites". Phil also gets up during this time and starts getting all the things in the car, making coffee and basically doing other things to help us get going. This morning, he threw a load in the washer because Adam's pull-up leaked and his sheets were soaked- which woke us up at 3am.

7:00 am- we are all in the car
Drop off kids at two different schools and we are off to work by 7:30 am.

Adam goes to two different schools. He gets dropped off at daycare and a bus comes at 8:30 and takes him to a special education disabled preschool program. He gets returned to the daycare at noon and stays there till I get him.

4:00- 5:00 After work I get dropped off at home and I quickly make his meal. All his meals are carefully measured and we have a list of foods that he tolerates. I am usually done the meal when Phil comes in with Adam. Phil will give Adam his meal from 4:15 until it's finished. It takes him about 45 minutes to eat his 3 ounces of food and drink 4 ounces of milk.

5:00- 6:00- I am making dinner for the rest of us, supervising homework and generally telling everyone to stop yelling and hitting and that we do not play ball in the house.

6:00- we eat dinner in 15 minutes or less, Adam wants no part of this, since he just had feeding therapy and something usually gets spilled. I clean dinner up, this takes longer than it did to make.

6:15- baths and showers begin. The floor is soaked. no one ever puts the curtain in the tub and everyone uses 6 towels each.

7:00pm- we must give Adam his third and final therapy meal. This takes at least a half hour, sometimes an hour.

I put Adam to bed- He gets a tube feed directly in his stomach with his feeding tube at 8:30. This feed runs for an hour and is 300cc. He gets another feed at 12:30, which ends at 1:30am.

This gives us about 4 hours of sleep a night.

If something happens like there is an illness, a wet bed, or a delay in beginning the feed at 4pm- the entire feeding schedule is pushed back. So if there's traffic, a meeting at work or something unexpected- then we are screwed and sometimes only get 2 hours sleep- or less.

Phil is great about staying up and I always do the early morning, but we are all kind of awake anyway, Adam is in our room and all the tube feeds and beeps don't make you very well rested.

Also it should be noted that we have piano lessons once a week and soccer. I know. It's crazy. On those nights, we just laugh at the madness of it all and figure that sleep is never going to happen.

Also, because we are completely INSANE, Phil started graduate school in September. So he's gone two weeknights and does much of his work for class at 1am.

 My cousin helps us at least once a week and my mom sends dinner one night a week and comes to help. We are always doing laundry, the kitchen is a mess, we wear wrinkled clothing and never pay our bills on time.

I think we are getting the hang of this. October here we come.

one week down

Okay. So it's got to get easier, right? I mean the first week should be the hardest, right?

Well, all of July we were in Philadelphia, in the hospital and we've been home for one week. It has been one hell of a week. Basically, it's just like being in the hospital, but I can stay in my pjs- and really I have to stay in my pjs because I have no time to do anything.

We need to do 3 structured meals each day and one unstructured meal. He also needs to be constantly reminded to eat and drink a snack midway between the meals. They said the structured meals would be 30 minutes, but they are not. It takes a bit of time to measure and make his meals. We bought a little scale and bowls that are microwavable, plastic, and solid in color so he can't be intimidated by the amount of food. We feed him 3 ounces of food- so for example this might be: 1/2 a chicken nugget cut up, about a 1/4 of a small applesauce and maybe 1/2 of a small kids yogurt and 3 ounces of Carnation instant breakfast mixed with whole milk.  This has been taking an hour to feed him because of how often he spits and vomits up the food.

I am remaining calm and picking it up and giving it right back to him, but it takes forever. Then there is the clean up- of him, the floor, kitchen, etc.  Because we are doing this like every couple f hours it feels like all we do is feed him, no time for showering, laundry, cooking for anyone else.

It's like having a newborn. Except when you have a newborn, your family comes over and sends food, and offers to feed the baby and hold him and help you and the baby doesn't do anything in between- they just lie there. Well, Adam is an energetic 3 year old and the only people who can feed him are me and Phil.

Also his newest trick is that he takes the spoon/fork with the bite on it and acts like he's picking it up to eat, but then he throws it full force. So I have splatters of yogurt and pudding everywhere. I have to stay even and calm and scrape it with the spoon and then forcefully place it in his mouth and say, "take your bite, keep it in your mouth" Then he spits at me and I repeat this. Typically by the 6th time, he is swallowing it, but each time, I have to stay calm and centered. No attention to anything negative. All negative behavior is ignored. It's very hard to be your child's therapist. 3 times a day.

I bought some bins for "feeding toys" and need to scout some garage sales because he's already getting bored with them and I bought some shower curtain liners to put down all around where he eats. I feel like Dexter taping up the surrounding area before I slaughter my victim, a real serial killer.

we have him in a booster by the back door, because he grabs everything within reach and it needs to be different from unstructured meals (where he sits in a high chair) Some of the liner is left on the floor and the bins are by the wall where he picks his toy for the meal. The other liner I hang on the wall behind him. At least the tiles are washable. Thank goodness for swifer.

Tomorrow is his follow up and I hope he didn't lose weight, but with all his antics and vomiting, he might. I just hope we don't go backwards and need to increase tube feeds.  

OMG

Okay, Well he has a new trick.

Wednesday night, during the dinner feed, he spit out lots of chocolate milk. This was NEVER a problem. He decided to spit the milk directly into my face. He wasn't angry, he was hysterically laughing. This went on for almost 30 minutes. I would take the cup, say "keep it in your mouth and swallow" and he would spit it out. The sips got very small, but he would find a way to spit it out anyway.

I was covered in chocolate milk. My mom's walls and floor were covered in chocolate milk. (Those of you who have been to her house know, that her house is spotless, white, and everything is made of glass and has sharp corners).So imagine the scene.

I found it VERY hard to stay cool and calm. He kept laughing and the joy he got spitting this out was greater than my approval, playing with him , or any toy I had on hand.

I took off his shirt, beacuse he was having fun wiping the liquid with his shirt. I had to turn away from him and slowly count to 30 to keep cool before repeating the steps.

The feed took over an hour and he didn't drink more than 3 teeny tiny sips.

We called them on the phone and it was explained to us, that he is losing control and knows that liquid is controlled by him, it is the hardest to make him drink and he is smart.

We were doing the right thing and to stay strong.

He did this "milk trick" at all 4 feeds Thursday when we stayed home to practice. It did get less by the last feed, but it was still present. It also didn't matter if it was Phil or me doing the feed.

This morning we are back in hospital and he did it for the therapist, so she got to see him spitting it out. Crazykid.

We are down about 50% on tube feeds and if we can get him to DRINK then it could be over faster. He doesn't drink enough and needs these tube feeds to stay hydrated. The therapist saw our frustraions and reminded us to keep strong and that they are on call all weekend and will talk to us about concerns and any "new tricks" he discovers.

how it is

So we were to relax over the weekend. We relaxed.

On Monday, I did the 3 meals here, and they were a bit problematic, but we got through them, and I did not have the therapist in the room. They watched, but it was all me.

Tuesday was Phil. He did the meals with the therapist and then today he did the first 2 meals without her.

He still is inconsistent and tests us. He wil spit out food again and again, but we keep replacing the food. if he spits it out 12 times, we will give him the 13th bite. He eventually will learn this. It is exhausting and tiring and draining and really hard to ignore and stay relaxed during the meal.

I've been reciting poems in my head and song lyrics, to stay focused and calm.

Yesterday Phil almost burst out laughing at Adam's antics. He kept screaming, "Dad, Daddy, it's me. Look at me" over and over, but because he was spitting and refusing to chew his food for the therapist, Phil was ignoring him. It was difficult to keep it up, and it's even more difficult to remain cool and calm when replacing bite after bite after bite of food.

They are giving us the day "off" tomorrow. it's not really a day off, they are really just sending us home to practice at home. We have to do 4 meals tomorrow at home. So, this will take about 4 hours plus mealprep time. Then we will report and share with them on Friday how it went. They will also talk to us tomorrow on the phone if we have any problems so we can get questions answered before the next feed.  Then Monday is our discharge meeting and we are DONE. We follow up every 2 weeks for some time and hope for the best.

We entered here being 100% tube fed, eating nothing but  an occasional slice of Land of Lakes American White Cheese.

Now he will eat at a structured meal therapy session :3 ounces of food and drink 3 ounces of milk.

He will eat: grilled cheese, mac and cheese, broccoli and cheese, green beans, bananas, peaches, applesauce, scrambled egg, pancakes, yogurt, meatball, spaghetti and tomato sauce, chicken nugget, and mashed potato.

It's a struggle and will continue to be one on one eating for a while, but it's a start.

I think we can do this

Friday's last meal was a train wreck. Adam chewed me up and spit me out.

I was holding back tears, so frustrating. His bites were miniscule and he kept holding the food in his mouth, getting no reward, the next bite comes, now he vomits and then I had to replace the first bite and move on to the second bite. The therapist was reminding me that this is his choice, he can swallow pudding in less than 30 seconds. He is choosing this. It was really hard.

Afterwards, the dr was talking to me that maybe he doesn't feel hunger, they have cut his feeds so drastically, he should be hungry and he also isn't having enough bowel movements. She will bring his GI up to date and that dr. should have some recommendations to help. He may need to be put back on an appetite increaser or some meds to move his bowels faster.

She told us to take it easy and relax over the weekend.

my first feeding day- friday

today was and is super hard.

I am feeding him now with the therapist and breakfast was rough. It took forever. The steps feel unnatural and he vomited and I had to use physical guidance and he is holding his bites to attempt to stall the next bite from coming. At the end of the feed, the last step is me saying "Last bite, after this bite, we are all done". He then took the bite. Next we reward, praise and play for about 30 seconds. Then the toy leaves and I say "when you show me your empty mouth, we can go".

I ignore him until the bite is gone and he shows me an empty mouth.

Well, he held that last bite for over 7 minutes.

Very frustrating. Lunch was no better.

week 3 coming to a close

Well, we had the meeting Tuesday and it was interesting to say the least. 

Lots of questions got answered, it was about an hour long and I'm sure we will have more questions as the time progresses. Basically I will start entering the meal times on Thursday, but as a watcher, just sitting in the room. We need a lot of things for home to do these therapies 3 times a day and it seems like it will be easier if I buy his foods in bulk, prepare them ahead of time, measure them on a scale and store them ready to go. So, maybe I'll need to devote like each Sunday for meal planning and food shopping for the upcoming week. In the beginning, we will need to feed Adam one on one for at least 6 months three times a day, preferably with two us around to "block" him if needed- especially in the beginning. We thought our days were hard when we had to bring all his tube feeds along! Now, we really must get 3 therapies in each day with him no matter what. So, we won't be travelling to anyone's housepartypajamajam or tourist attractions or having "date night" too often in the next 6 months. 

Some other questions and answers we got were: There is no research based link or proof that he will have an eating disorder as an adult. His diagnosis is childhood feeding disorder and failure to thrive. They don't take into account that he won't like any of the foods, like they don't care, it is believed that since he is a new eater, he hasn't eaten enough stuff- like anything really- to know if it's good or not. Mealtimes are about teaching him to be compliant, use his lips, chew and swallow. They also said initially every new food he eats is confusing to him- like when you order a coke and you get flat sprite. You take a sip thinking it's coke and then make this face and are confused. He is confused all the time with anything new because it's all new, so he spits and reacts to that.

The last real important thing that was talked about at the meeting is that everyone that comes in contact with Adam and deals with food with him can not use any form of incentive or reward around any aspect of food. For example, you might be eating and offer him a bite of your cake. He most likely will say, "NO". It stays there. You can talk about how great your cake is, but you need to refrain from saying, "c'mon try it, we can go outside if you have a bite, or we can go play, or have a sticker if you eat this, or watch tv." Basically no incentive no reward of any kind no deal for a bite or taste of anything. 

If he wants it, he'll eat it. Please continue to offer him food and show him how great it is to eat. Also (if you don't mind) encourage him to touch your food. It's an early step, and they explained that he won't ever eat what he won't touch. But don't bribe him to touch your food- no "deals". 

Yesterday-Wednesday

Adam pulled new tricks.He took a day and regrouped for the counterattack. Now he's no longer aggressive. He's passively resisting. In those 3 feeds he did the following: Chewed forever- like a zillion bites, moved spoon slowly, smiled as he spit his food out, smiled as he spit food into his cup- into his hand and pulled his shirt up and spit it down his shirt. Each time he was met with them "forcing" the bite right back in, but it didn't stop him from trying. He also hid behind a toy to spit and took teeny tiny licks off the spoon. 

I guess it's best that he's doing it all now, so we hopefully have seen all he's got before we are alone at home with these antics. 

The psychiatrist was watching with me and commented that, since all these foods have been eaten fine with us here it's not the food. he knows these foods, that part was worked through last week. This is his personality now. This is him being clever and testing. This is all behavior. He's the kid that will come in at 10:31 with a 10:30 curfew. 

I think she's wrong. Adam is the kid that will come in at 2 am after Phil and I have gone looking for him and called the cops with a 10:30 curfew. Matt is the kid who will be home at 9:45, because he was worried there'd be traffic, and 10:31 when he's really mad at me, for spite.

THURSDAY- today

I went in and fed him. Breakfast was long and I was unsure of parts of the steps and hesitated when I had to use physical guidance. Lunch was slightly better and the last meal was similar. I had help, but worked through: him vomiting, spit it out, playing with spoon, dilly-dallying with liquid, and dropping food on floor on purpose. 

It's a start and I hope I'll get more comfortable tomorrow and this goes  bit faster by September, or he'll be eating breakfast at 5am in September to give us the hours it's going to take to get these bites in! 

what adam eats now

We are just starting our 3rd week and Adam now eats:
1. Cheese
2. Macaroni and cheese
3. Grilled cheese
4. Broccoli and cheese
5. Banana
6. Peaches
7. Yogurt
8. Chocolate pudding
9. Applesauce

It's awesome after 9 days!
That's roughly 32 one hour therapy sessions.

We have learned that Adam is a quick learner, it has taken him only two meals to be okay with eating a new food.  We have learned that Adam is stubborn and will try all the tricks he's got. When his yelling, hitting, spitting and vomiting didn't work, he tried new stuff like: chewing slowly, turning his head to spit out the food thinking that you or the people behind the mirror or the video camera can't see him, he also will smear the food into his shirt thinking that will end "the bite".

Tomorrow is the family meeting and then we will be brought into the therapy sessions and trained. I am nervous and hope that Adam does not smell fear.

Week 2 Day 4

So he's had 6 days so far of "eating school" and he really has learned alot!
Yesterday I felt was really terrible. All 3 meals were ugly. He blocked many bites with his teeth and would not let food in, he spit out preffered food for the first time- cheese. He actually spit at the therapist (besides the yelling and screaming and attempts to hit, which he's done all along) and he yelled the only "curse" the meanest thing he knows to say. He yelled, "Go Away".

We have had several weeks back in June where he began saying "Go Away". We explained how fresh that was and it's not allowed. It got him several time outs and that phrase disappeared. Until yesterday.

They also switched out the macaroni and cheese for applesauce, and all that negative behavior yesterday was in response to applesauce. Yes, applesauce.

It seems like we have quite a bit of data, and the doctor explained that Adam is consistently inconsistent. They are unsure why. Phil thinks it's because secretly Adam is the one collecting data on them. :)

He prefers and will eat: cheese, grilled cheese and yogurt. The yogurt part is awesome, he learned in the 6 days to lick the spoon clean, and willingly eat yogurt. He does not prefer macaroni and cheese, banana, and applesauce. In spite of that, there have been some meals and some bites within the meal that he will eat those foods and other times he blocks them. He also seems to call all the foods he doesn't eat willingly "banana". Afterwards I ask him what he ate (even though I am watching behind a mirror) and he tells me "cheese and banana." I also ask him how he did and he aways gets real happy and says he ate all his bites. So he is also learning to lie. :)

We all expected this morning to go as terribly as yesterday and we were prepared for them to use physical guidance: this is where they put pressure on his cheeks by his mouth and basically force him to open his mouth. However, Adam ate all the applesauce this morning. Who knows why.

For lunch today it was really interesting. They gave him cheese, grilled cheese, yogurt and banana. In that order. One bite of each. The first time he got to the banana he fought. I'm talking like he never fought yet. I thought yesterday was bad, well he pulled out everything he had. She applied pressure and got him to put in in and he would spit it out and then spit at her. She would put bite back in and he would yell, hit and then he made himself vomit. She put the bite back in and he vomited again. This struggle he had went on forever. I'm not exaggerating, like 20 minutes. The therapist was calm, cool, never raising her voice, only applied what was needed. Finally the bite went in and he swallowed it. He was angry with her and didn't even want the toy or praise. The next round he ate all the bites and was back to laughing with her until that banana came up again. This time the struggle lasted a small fraction of the time. Maybe 5 minutes. He swallowed. The next round of bites, went fine. Cheese, grilled cheese, yogurt. The banana's turn again. This time, Adam ate the banana with her hand over his hand on the spoon. He let the banana fall out of his mouth, but then he quickly picked it up and put it back into his own mouth before she could do it. The last round, he ate all the bites willingly.

He also has learned to eat his last bite very quickly. He learned when she says, "Last bite" if he eats it fast, he's done.

He was worn out from the lunch feed and pretty much fell asleep in seconds afterwards.

Also, Occupational Therapy yesterday and today were awesome! He made such amazing progress, he made a salami and cheese sandwich, played with sweet potato, pudding, mashed potatoes, and banana. He had fun and even let the food go near his mouth. He even took a few bites of kosher salami, of all things!

He is learning.

Week 2 Day 2 Eating School

So we had an uneventful weekend. We get to go home on the weekends, so we booked it out of there, hit a lot of traffic and got home several hours later, wiped out.

Adam was happy to be home, we did laundry and put it all back in the suitcase. Saturday night, Phil and I got a sitter, we really needed a night out and we laughed at a comedy club for several hours, great fun. Sunday night I headed back down here to Philly. Phil is staying home this week. He has to work and his graduate class starts this week, so he can't come.

I was nervous about doing the drive and all by myself, but it's all good, and the first day, Monday, yesterday was fine. They introduced another food, so it is: cheese, grilled cheese and mac and cheese. I am cracking up because it's all like the same food, but not to him.

Breakfast was ugly: yelling and hitting, clenching his teeth. He will eat the cheese and the grilled cheese, but not the mac and cheese. They brought in the blocker, but he wouldn't eat it. For lunch, they then put all the food on a spoon, to see if it was the spoon. He then ate the cheese  and grilled cheese off the spoon, and took a small tast of the macaroni and cheese, but wasn't real happy about it all. For the third meal, he still fought and some bites of the mac and cheese went in, and others didn't. No problem with the other cheese forms.

Today the stuck with the same number of bites as yesterday and the same 3 foods. 18 bites, 6 bites of each. For breakfast, he ate all his 18 bites, no problems at all. It was his primary feeding therapist and she does most of his meals, he seems to eat best for her and they can't have that, so they needed to see if it was the therapist, or if he's used to those 3 foods now. For lunch he had a new therapist and he ate all his bites again. Which might suggest that he's used to those foods. He also might have an issue with using a spoon, or the texture, so they might try another food on a spoon tomorrow to see what he does.

Last week and this week, it's all data collection and like a big experiment with all these therapists and doctors. They are trying to see what his deal is and what he will do and what he will tolerate and eat.

Today they explained to me some of the things I need to do to prepare for him to go home and to do this at home. Right now the plan for home seems like we will do a small meal like they do here around 6:30-7am, one at 4-4:30 and a larger meal at 7. These "meals" will be one to one at home each day, so I need to think about how to structure things to work around the attention he will need from me to get this done. We probably will need to talk and explain things to Matt so he is non -disruptive during these 3 therapies. Also our dinner meal will still be the family and Adam joining in and having fun with whatever we eat, but no pressure to him to eat during that time, it will be just social and fun with food (same with breakfast and lunch on weekends and hoildays) It seems like I will be in the kitchen from 4 till 8 each weeknight, with Phil taking 2 classes this fall, it will be a balancing act, hopefully 5th grade homework can be done mostly alone.

Eating School

We started Eating School. One week down. 

We needed to attend an intensive feeding clinic- there are only a few on the East coast, and Adam is pretty much 100% fed through a tube.  Adam's trach was always his first priority, it was removed in May '09 and we thought he would eat more when it was removed. All our energy went to removing that trach- and rightfully so, breathing and speaking were paramount.

Beginning last summer when his trach was removed, we focused on the feeding issues, increasing feeding therapy to twice a week, going to his gi every 6 -8 weeks instead of 3-4 months. Changing up his feeding schedule (including us getting up at 5 am and staying up till 1 am), trying new medications to increase appetite and engaging in behavior therapy. We thought school would help too. He attended school full time this entire school year, where he got no tube feeds during the day- he was with other children eating 3 times a day. No. It didn't work. We investigated long term intensive programs and did a 4 hour evaluation back in March to get him into Chop's feeding program. 

We were unsure until 2 days before we were set to go, if we would be able to go due to insurance and the cost. Given the quick notice I was freaking about packing and trying to get it all together, the lists of what to bring are extensive. We also will basically be gone and living out of a suitcase for over a month. 

WEEK ONE 

We started on Tuesday. It was an exhausting day. We got there by 8:30 and met with a ton of different people: nutritionist, feeding therapist, psychiatrist, nurse,  MD, nurse practitioner, and occupational therapist. Everyone asked a bizzilion questions and many were the same. 

We spent a lot of time in a little room, Adam was wiped, tired, and needed to run. We also had to feed him in a room while they all watched us through a one way mirror. I found this creepy and they said, "oh, we just want to see how a typical meal is at home". 

Well, we don't normally feed him after utter exhaustion, without him eating for 5 hours, in a tiny room with little stimulus, in a weird wooden chair and table, with you guys watching us. 

The meal was funny because I had to bring food that was preferred and food that he rejects. So, he ate tons! He ate an entire piece of turkey. Which was crazy. I actually was laughing because we must have offered meat to him every meal for two years and he's never eaten it. But on that day, he dove right in. He also drank, ate more and asked for more food. It was a pretty abnormal "normal" mealtime. 

On Wednesday he had three meals with a feeding therapist. All the meals are videotaped and we watch through a one way mirror.  She started with a food he likes- cheese. He ate all this bites with no problems. Each bite he takes is immediately rewarded. We have done things like this in the past and I can see why they don't want anyone to just do their program without being trained. There are subtle differences in the language and movements of the therapist that are different than what a person might normally do, even when the person knows to reward. He ate all his bites- no problems. 

Occupational therapy was also on Wednesday- it was an hour and really fun. Adam loved it. The therapist was cheerful and laughing and it was play without any pressure. He had a blast painting with peanut butter and making me a jelly cracker sandwich.

Thursday- Breakfast was no problem. During lunch they decided to introduce another food- banana. He wanted no part of that banana. He fought her, yelled, screamed, threw the food. During dinner they tried again and brought in another therapist to block him. She stood behind and prevented him from using his arms to block the food. He was yelling and really fighting them. Whenever she would get a bite in his mouth, he got praised and rewarded even though he spit it out immediately. 

Friday- Breakfast- today they would not reward him for taking the bite- he had to swallow it. So, he was given back each piece that he spit out at her. It was frustrating and exhausting. But every time he spit it out she would put it right back on the spoon. They also had to have the 2nd therapist block his arms again because of the hitting. Lunch went fine. He ate every piece, it was as if he was a different child than the one from breakfast. Dinner- they switched the therapist and he fought all over again. Yelling, hitting the works, He was spitting it out and she gave it right back to him. 

My impressions/feelings so far

• it's hard to know what's best for him. I mean, Phil and I constantly talk about all this and if it was me at that age acting like that, I'd want my parents to do everything that they could and I'd say to them now, why didn't you just make me. Well, that's want we are trying to do-change his behavior and make him eat. 
• no one prepared me to how I'd feel watching him struggle and fight like that. The doctors go over the techniques and I signed a waiver and all that, but they should really talk to parents about it. I was crying and laughing afterwards and during and the emotions for the parents should be discussed. 
• I have like a ton of questions. I am constantly writing down questions and asking the psychiatrist  and therapist things all week- I have so many more questions that I didn't get a chance to ask and hope they will give time for this next week. 
• there is a lot of down time. much time to kill. I am also a germfreak and used a bottle of sanitizer and my knuckles are chapped from hand washing. I hate absolutely hate staying in the hospital and all week it was like over a hundred outside making walks in the city difficult. I found a quad of grass and old buildings that every college has a few blocks away at upenn- that was fun to unleash Adam and let him run around safely and there is a bookstore a few blocks away that I took him to today, but there isn't enough stuff nearby. I am going to research that this weekend and try to find something to do. 
• they don't take into account naps- the nap room is not good and it was too hot outside so each day I found a chair and held him- he was fine, but I was very uncomfortable and I wish they had plastic couches in non infectious areas of the hospital.
• It's strange to watch him when he can't see me. He looks right at me and then I realize he's looking at himself in the mirror. This led to me visualizing Adam jumping up out of his chair and scratching a hole in the mirrored glass, smashing through it and yelling "Womack". I can't help but see him as Sean Connery in The Rock. This thought makes me laugh and then I relax. 
• The days are super long, super tiring, and it's hard to not be home afterwards.
• I realize this sounds all negative- I don't mean it to be. This is a long road and we just took the first steps. I am grateful we can take this road and so thankful.

catch up

Hey, really haven't been blogging at all lately, mostly because the newest twist on our "disabled life" has been confidential.

Adam started public school- preschool disabled, he turned 3 on May 16. We had some disagreements with the school district, hired an attorney and everything got straightened out. We feel good, but really it has to be kept within the family.

So it's all good now. We love his teacher. Monday (4 days ago ) was his last day of school until September.

phew.

Baltimore

2 weeks ago we went to Baltimore for the weekend. It was the first time we ever went anywhere overnight by ourselves in 3 years. It was not easy.

We needed to stay someone very close to the harbor because we needed to be able to walk back to the hotel to tube feed Adam and be able to take naps and have his medical stuff nearby. We stayed at the Hyatt- I would recommend it.

He's also a crazy runner. Like, everywhere he goes, he needs to run there and the Inner harbor has no railing, no wall, no fence. It was a bit dangerous at times and Matt was great at helping us herd Adam away from the water. Adam also would yell, "No, THIS way!" and demand to go in another direction than the one we were heading in. Quite a few tantrums, which results in vomiting. Adam also ended up in time out a few times, too. Overall, I think it was great for him to get out and see new things and experience things. He spent the first 2 years basically living in 2 rooms, so everything we expose him to is a good thing.

Our  trip went like this:
Arrived 7 pm Friday, we checked in, went to eat and let kids run around Harbor area.
Saturday:  Aquarium in am, After lunch Adam went back to hotel  with Phil for tube feed and nap while Matt and I stayed at Aquarium and toured some old ships in Harbor, Met up for dinner at ESPN Zone and Phil and Matt went to a baseball game at night. Adam went to bed.
Sunday: Ft. McHenry, Lunch, Science Center, Dinner at my Aunt and Uncle's house and drive home around 8:30 pm.

Tube feedings are hard to do on the go. The car tends to make Adam vomit. Twice he threw up in his carseat. There is a lot to bring along (pump, syringes, water, food, bag) and people always stare, so we found it was easier to slip away and feed him. Going places also illustrates how great Matthew is with his younger brother. He helps us with Adam and provides an extra set of hands. He's patient with him, too.

We were exhausted when we came back home, but Matthew and Adam really had a great time, so we did, too.

it's official.

Let's start with I'm a loser. I mean, here I am all tough girl and of course I get teary and emotional at the iep meeting today. Needed a tissue. Great, I'm one of 'those' parents. I know they will talk about me afterwards.

Here's the deal, we went to a lawyer.  Great lawyer. super nice. We gave her information and all the the results and some money and she coached us and prepared us for the iep meeting. She would have represented us at the meeting, but that was too much cash for us for now. We got the information and were prepared that if it did not go well, we would NOT sign it, then pay her the retained fee and go from there.

Her coaching was good. We felt prepared and knew what to say. Adam will have what he needs, but it should be noted that we have been to numerous meetings as teachers and are more informed about this stuff than the average parent. I would say that this process is not designed for the poor or uneducated and it would easily be intimidating for a parent.

I mean, there's a whole lot of professionals, they give you reports and go over test results with no glossary of terms. I mean, what it you don't know: norm-referenced, percentile vs. percentage, domains, true developmental functioning, scaled score, quotient, or confidence interval.

I guess, you'd ask, or be intimidated or not even ask for fear of being seen as dumb. Also, what if we hadn't paid the attorney, because you didn't have the money? Yes, there are clinics and advocacy groups, but when I called those, there are long waiting lists due to our budget cuts in state right now.  If we didn't pay the lawyer, I think we would have inadvertently screwed up the feeding and medical components and would not have had the knowledge to use particular phrasing.

Also, it was a really emotional thing. Which should be noted and no one really addressed this to us as parents. I mean, up to this point, we knew he was disabled, special, had medical issues and diagnosis which contribute to developmental delays, but no one ever said. "Your son is disabled".  We had (up to this point) all kinds of medical labels: subclottic cysts, failure to thrive, chronic lung disease, etc.

Today, Adam was given a legal label. He is now a preschool child with a disability. A disabled preschooler. This is a label that we agreed to. A label that may or may not be overcome. I don't know if at the age of 5, he will have made gains or will this label prevent gains. Will he only achieve to this level? It is a serious thing. It is also a very emotional thing.

It is an emotional label and no one addressed this at all today. No one warmed me this sadness would come. Yes, he needs the label. He needs the services. He needs the help and without the label he will not get the services or help. But it's a crappy label and I wish services would be given without labeling my child. I wish all children would get the education they need without legally labeling them. It also hurts my heart to have such a feeling of permanence.

Ah, testing 1,2,3

Okay, so earlier in the week Adam had his evaluation for preschool disabled program. Early intervention (he currently gets 3 hours of therapy a week) will stop when he turns 3 (in May) and so now it's up to the public schools to provide services.
We had an eligibility meeting a few weeks ago and now it was time for his tests. I brought him to the school offices and there were 3 people in the office and a student who was observing. One was a Social Worker, one was a Speech Pathologist and the other was a Psychologist.

At no point did I tell them my background, and it was interesting to see all of it from the other side.

For the first question they asked Adam what color a particular shape was. Adam replied, "Octagon".  It was actually funny and the woman laughed, she said she hadn't expected that answer. She repeated her question stressing the word color, and he replied correctly.

Basically he's all over the place. Some things he could do: ie thread beads, knows most letters and numbers. Physically, everything they asked of him- backwards walking, throwing, jumping, raising his arms.

He didn't know the answer to things like "who's hair is longer?" or "Who is tallest?" when shown photos with a few people in them. He also was unable to follow more than one direction with unrelated items. For example, she had a cup, tiny baby doll, car and ball and said things like, "Turn the cup over and hand me the baby".  Each time , he looked at her and then sort of threw something in her direction. I could tell he didn't understand.

Also, because he doesn't eat, he's going to come out like a 6 month old on some of these subtests. I reminded the Speech Pathologist that he only was able to make vocal sounds since May '09, so that's only about 10 months. They were pleased and surprised with all he could say given only 10 months and they seemed positive.

I was good, I sat in the corner and once he got used to them, I moved my chair back and didn't say anything to interfere in the testing. The social worker asked me a bunch of questions, and at one point, she shook her head and got teary-eyed. She said to me that she didn't know how we have been doing all this, that he (and we) are amazing and she can't believe how good he is doing despite all he's been through. I handed her a tissue.

Personally, I wanted to roll my eyes. I don't have time for this, lady. We move on and deal.

It lasted almost 2 hours. Towards the end, Adam actually laid down on the carpet and answered their questions, he was exhausted.

They said to me that all the results will be mailed and we will have an iep meeting in early May. I thanked them.

I also called a lawyer specializing in Special education law and set up a consultation for Phil and I to go over things with her. I have been teaching a while, and have a masters in learning disabilities, but when it's your own kid, I'm afraid I will get overly emotional. I want to have an attorney coach me beforehand. This way at the meeting, I'll know what to say and if things don't go well, I will know how to end the meeting appropriately and already have an attorney to represent us in any future hearings.

Our goals are:
1. Extended school year for 4-6 weeks
2. Speech/Feeding therapy no less than twice a week
3. We need to have the nurse tube feed him. If other kids get fed and get a snack, than I need them to make sure he gets a feed while he's there.

All in all, it was better than I thought it would be. I was proud of him. The Child Study Team seemed friendly and kind.

Also on the way out, we had to stop at the enrollment office to enroll him. I had all my paperwork and proof of residency. The room was very institutional. You know, with  3 rows of metal chairs and a woman who was behind plexiglass, with a slot so you can slide your papers to her and a hole to talk to her. She looked the part: super grumpy and didn't move real fast. Next to the glass was a "now serving..." light up sign and a red ticket dispenser. Well, when it was our turn, we approached the window, Adam saw the red ticket dispenser and immediately began signing , "Cheese". He then begins demanding a piece of cheese from Mrs. Grumplestilskin. Even she laughed out loud as I had to explain to Adam that we were not at the deli.

Just think- 10 months ago he didn't even know what a supermarket deli looked like, never mind was able to ask for cheese by screaming "Cheese!" and signing like a madman. I have to smile.

Feeding Protocol

Okay, so a few weeks ago, we went to this feeding clinic (see earlier blog) and we are waiting to see if insurance will cover a 30 day hospital program. In the meantime, we have embarked on what this psychologist said to try.

We figured, Why not. We have been trying stuff for years, what's one more protocol?

So, here it goes.

She said to do the following:
Separate the tube feeds from mealtime whenever possible. Have him sit in the high chair when we all eat and give him one bite of food. No more. Encourage him to eat the one bite. Offer mealtime toys that he can just play with when he eats the one bite and if he eats the one bite, reward, clap, etc, but do not offer more. He's all done. If 15 minutes go by and he does not eat the one bite, then end the session. Take him out of the chair and move on. One bite, for one week, then move to two on week 2, etc.

Ok. We did this.
I went to Target and bought a bin and a bunch of small toys that seem fun and cool to fill in this "meal bin".

It's difficult to split up the meals and tube feeds for 3 days a week, because daycare is tough. Monday, Tuesday and Wed, he goes 9 hours at daycare and he doesn't eat. So we feel the need to immediately tube him at 4pm, then we struggle to fit the rest of the calories in before the next day- usually going to bed by 1am and then getting up to start his tube feed at 5am. But we did do our best, and when we ended the session, we let him run around for a bit and then tube fed him.

Week one went well. Lots of clapping, he ate his one bite at each meal.
Week two went well. Lots of clapping, he ate his two bites at each meal.

Food included: pasta, applesauce, cheerios, eggs, grilled cheese, pizza, toast, pancake, mashed potatoes

Week three started yesterday. Disaster. No eating, no three bites. He went back to throwing food and screaming. He gagged. He threw his plate.

I was calm. I removed him from chair, had him pick whatever it was up, he sat in time out on the steps for 2 minutes, he would return to the high chair. No toys worked as bribes. Nada.

So, this was yesterday. Today, same thing. No 3 bites. Not for any of the 3 meals. No waffle. No grape cut into 3rds. No spoon full of homemade chicken noodle soup. (which I had him help prepare and was smelling up my house something good all day)

As I write this I cry in frustration. It is so difficult. So many tests. So many experts. You, you frustrate me with your suggestions. Now what?

I will go back to 2 bites. I will get some more tissues. We will continue.

Feeding clinic

As you all know, Adam does not eat. I mean, really- no food. We have had operations, feeding specialists, been to both clinics in our state, see a GI every 8 weeks, and a weekly feeding therapist. We have tried: skipping meals, only favorable foods, tv, sticker charts, punishment, rewards, small portions, clapping, and ignoring.  We eat at the same time, all together, he sits in the same seat.

Basically- Here is a typical dinner routine.

It's 5-5:30ish After working all day, I have prepared any one of my 6 dinner meals. Let's say it's pasta night. So, there are turkey meatballs, pasta, maybe some fish, garlic, olive oil, tomatoes, salad kind of dinner. It's made and Adam was encouraged to "help". He also was allowed to smell and take part.

We sit down to eat, everyone is sitting. Adam has a bit of food on his plate, maybe a small piece of meatball, a few pieces of pasta, a cucumber. We ask him to eat. He refuses, whines, pushes plate away. We  eat and exclaim how delicious everything is. We then ask him to try one bite. If he gives in, he will then force himself to gag and sometimes vomit. We clean him up with little fuss and ignore, then we put him in his chair again and ask him to try a bite. He asks for a toy or tv. We tell him if he eats one bite, then he can have whatever it is he wants. Sometimes he will do this, most often he does not. Now he throws food off the tray. We make him get down and pick up the food and then return him to the chair. We ask him again to eat, now he will say he wants something that's not offered. Now we give him whatever he asks for: cheese, crackers, yogurt, milk. He does not eat any of this and his tray is a pile of food. At this point we realize he's not going to eat dinner, we hook up his high protein manufactured in a can food into his feeding bag and put it through a feeding tube into his stomach. He must stay sitting and chilling, or it's too difficult to deal with. He can't really "go play" while he's being fed this way and too much activity causes him to wheeze, cough and vomit because he can't handle mucous well and has lung issues.

We put on Max and Ruby or Wiggles and he gets tube fed for 45 minutes.

We are worn out, frustrated and now clean up the kitchen.

We've tried all of our state's feeding centers (two) and now went out of state to Philadelphia. We waited 2 months to get an appointment with a team.  This was a nutritionist, doctor, speech pathologist, occupational therapist, and psychologist all specializing in pediatric feeding disorders. They asked us tons of questions, we had ALL medical records sent, and they evaluated Adam. After 2 and a half hours, they had us go play for 30 minutes or so and they all went into a room (think tank) and talked about their findings and developed a plan. Then they returned and shared their findings and suggestions with us.

Here it is- abbreviated version:

nutritionist: no suggestions. He is alive solely on 4 cans of manufactured food.
doctor: prune juice to keep him regular and follow with our Gi every 8 weeks
speech: She was impressed and applauded our work and how far we have brought him in 6 months (he was only able to make noise at 2 years old). She said our signing and pecs helped him.
OT: more food play
Psychologist: A 30 day intensive "feeding camp" where he can be taught all that he is missing. His beginning was so hard: Tubes everywhere for so long that he does not know that food equals warmth nor does he recognize hunger and know what to do to deal with that.

This 30 day hospital program is one of 3 on the East Coast and the only one that is under 3 hours away. NJ public assistance medical (which we have just for Adam) does not cover this, and our regular health insurance carrier decides if this treatment will be covered on a case by case basis. So, it's up to the insurance company if he will get this treatment. I am praying that they see that it will help him and is more cost effective in the long run.

I asked how much does it cost, if it's not covered, and the answer I got was "we've never had a family able to go if their insurance doesn't cover it."

Great. just great.
Please come through, Mr. Insurance Carrier, please.

eligibility meeting

Okay, so we had the meeting. There was a social worker, psychologist, learning consultant, teacher, nurse, special ed teacher and an intern, me and Adam. It was crowded.

It was also interesting to experience all of it from the parent side. I got there and they just asked me a few questions about Adam's background.

I briefly explained his medical history (the 3 minute version) and the current therapy he currently receives from Early intervention.

Adam was ridiculously shy and cried for a bit. He even spit up some lovely mucous in these scratchy institutional brown paper towels during the meeting.  The only one that gave off an unfriendly vibe was the psychologist. Nothing I can pin point, just a weird vibe.

They said he was eligible based on his apparent issues with socialization and communication and they will test him formally. 3 people will test him. They will call to schedule this (it's already scheduled for March) and I signed consent and an attendance sheet. At the end, one of the women mentioned to me that I seemed rather knowledgeable  about this process.

I responded, but I did not tell her about my own background as a special education teacher or about any workshops I have attended. I just said, "Thank you". I am sure they will at some point ask, and it's not a secret, but I did not want to go in there all bossy or flaunting or anything like that. I got my parental rights book from them and shook hands and hope we are all on the same page. Communication Impaired and Inclusion all the way. Let's hope they agree.

flashback

Well, we have our first meeting (eligibility) scheduled for next week for Adam and the public school system in our town. I called to confirm and I asked a question. On the form they sent, they asked for me to bring Adam's immunization record and his medical records.  They can't be serious. I mean, his chart is HUGE at just the pediatrician's office, let alone all the tests, surgeries, the 3 different hospital stays, etc. So, I asked them what records specifically did they need and I explained that to bring all his records would be difficult. She said to bring the most recent (again, I'm not sure what that means- I mean recent visit? what doctor? A note? A test? )  I will be pissed off if I spend hours (that I don't have) on phone calls and making copies and faxes and collating all his records in one huge box in one week's time only to find that they don't need it all. So, I decided that I will bring nothing and have them let me know what they specifically need at this meeting.

Anyhoo, I went through some of my boxes and records of Adam's at the house (looking for some medical "recent" records and came across my journal from when Adam was in the NICU over 2 years ago.

Here are some excerpts:

 June 6
I'm writing this from your bedside while you sleep. You have been on the ventilator for several days- actually since the 1st (a Friday). The weekend was really rough. They put you back on a ventilator on Friday because you have too many apneas- you forgot to breathe- A lot. they checked you out to see what was wrong.


Over the weekend, you had your second brain scan (no bleeding) another xray (you've had too many to count in the past 21 days), a spinal tap, blood tests and all came back fine- except for some CRP blood test which shows potential inflamation- it was high- 139. It should be below 10. Today is was good (lower in the 20s) so you are still on the ventilator.


I have held you only a few times. You can't regulate your temperature and you are too unstable. On Thursday the 31st was the last time I was allowed to hold you. I held you skin to skin and your oxygen and heartrate were great. In the past 5 days, you have been too unstable and they won't let me hold you.


Also over the weekend Mommy and Daddy were very angry at the doctors who were on call. (your regular NICU doctor was off) They didn't answer our questions and tried to just use confusing vocabulary and spoke in circles. Also the physician's assistant (who was in charge one of the days) told us that you are "rapidly deteriorating".


Today you are doing better. I don't care what they say. I am so proud of you and I tell you that every day. I see you everyday and sit by you from 8 am to 2pm. Daddy comes from 6 to 11pm. Hopefully we can come more and stay even longer when you can be held. Right now we sing to you but you pretty much sleep almost every minute. Today you weigh 750 grams (up from 665 grams at birth) and you've grown 4 inches in the last 21 days since birth.......


Saturday June 9
You are still on the ventilator. Thursday during rounds they were talking about moving you to CPAP (extubating you) While 3 doctors and 2 nurses were surrounding you and discussing this, you destated in front of everyone. ... Today's plan is to dc the antibiotics and the iv, but keep you on the ventilator....you are back in an isolette now (after a week in the warmer) it's better because it cushions the sound and the light. It also makes me feel like you are more stable. ....


6/12
They took you off the ventilator and you got a blood transfusion - you get Daddy's blood. He donates it for you to help you and all your food is my breast milk. The human body and science is remarkable, you had another brain scan and everything is still okay....


6/20
Yesterday you did the scariest thing to me, I was allowed to hold you for about a half hour (they said that was all I was allowed- you still can't regulate your temperature) and while I was holding you you had a brady. You just stopped breathing and turned gray and wouldn't come back. They took you and put you in your isolette and 2 doctors ran over, the nurse, respiratory therapist were all working on you. They used a bag to make you breathe. I stood there in silence with tears running down my face. When you came back they said you were okay and called for an immediate xray, so I had to leave the room. I went out in the hall to cry and call dad. As I was crying in the hallway, I looked up and saw Babci coming unexpectedly towards me- perfect timing. I really needed her.It seemed like all day was hard for you, you would be angry and fight the cpap machine then sleep and let it work and your numbers were great, then you would fight the machine again and it would start over. your sodium levels are fine, but you are retining fluid, so they will cut your sodium intake, maybe your lungs are fluid filled, too. ... It seems like sometimes the doctors know everything and other times, they guess at what is going on and hope the odds are in your favor. They painted a grim picture for us before you were born. ...


6/23
you are 2 pounds and 5 ounces today!


A lot of the journal was hard to read, and I cried rereading it in parts. I hadn't looked at it since he came home 2 and a half years ago, and I think it brought back the feelings of fear and sadness that consumed me during those 120 days.


Here he is this Christmas with his older brother.

6 month evaluation

Ok. So every 6 months, "They" make Adam get evaluated. These tests always make me feel crappy. It's like - Look at all the things your kid is supposed to be able to do but can't.

His therapists are AWESOME. He's been getting therapy since he was 6 months old (adjusted age of 3 months) and he'll be 3 in May. He used to get much more therapy- I mean he no longer gets PT or OT, so he's made MAJOR progress.

Well, we just signed off on his evaluation with early intervention and currently he is:
18 % delayed in Cognition
21% delayed in social /emotional
10% delayed in Gross Motor
17% delayed in fine motor
18% delayed in Adaptive/self-help
0 delayed in sensory
50 % delayed in communication

I can't really understand all of this nonsense (and I'm fairly educated). It seems so arbitrary to test these things that sometimes he does and other days doesn't feel like it. And then to get an exact percentage seems to me to take something which is subjective and make it seem scientific.

I understand he is delayed in communication. The baby could not make any sounds until he was 2 years old. I mean, really could not. The air escaped out the trach before reaching the vocal cords- for real, he could make no noise.

If I compare this summary report with the one from 6 months ago, he decreased his percent with cognitive. 6 months ago "They" said he was 33% delayed and is now only 18% delayed. But non of the other areas grew? It just doesn't jive. I mean, he is doing many more things than ever before in so many areas.

I guess they have to justify the program, and the growth and who gets what services, but to make it seem all mathematical seems wrong. In another country, culture, another time period, would he be delayed at all? What if we measured cuteness- he'd be ahead of his peers.

It is a social construct.

Winter break

I know, I have not blogged in weeks -since Thanksgiving. Basically it was nonstop till Christmas.

Christmas came and Adam was very sniffly on Christmas, but no fever. Then it was all non stop illnesses. Adam was sick first: fever for days, vomiting, mucous everywhere. When Adam is sick, it lasts a long time. He has really so little ways of fighting anything- I mean he missed the entire 3rd trimester and due to all his issues, it is so hard for him. His stoma (hole in his neck where the trach was) is still open, and gunk will come out of the hole. You have to clean it, and change bandages and he's a mess. He also developed a really bad cough.

We took him to the pulmonologist. The doctor explained to me that Adam has a lot going against him. First, he has chronic lung disease- so when he gets a cold it's hard for him. Second, he had a trach, and apparently a trach destroys some celia (not sure of spelling) but this stuff in your airway that helps you clear away mucous. He's missing that and so he doesn't know what to do with all the gunk when he gets a cold. It builds up in his lungs and he swallows it. He gets an infection and he throws up all the time. This is problematic for so many reasons. This time the doctor gave him an antibiotic for a week. He ended up with diarrhea and a crazy bad diaper rash. This resulted in another trip to the doctor and a cream. He also developed a stomach virus later the next week and my week was laundry filled.

Of course, somewhere in there I got it, so did Philip, my cousin, brother and my mother. These are people who are instrumental in keeping me sane, my home operating and things running smoothly. We we all knocked on our asses.

What a New Years.

Also in there, we took him for a follow up visit to the GI. Adam got put on some new meds to hopefully increase his appetite (he lost weight) and some new formula in his g-tube that is higher in calories.

We also wrote our letter to our school district asking them to evaluate Adam (he turns 3 in May) and early intervention will stop. Later this month we have our 6 month evaluation/planning meeting with early intervention (which they only do doing the day)

We made this appointment and did research over break. We have already gone to 2 feeding clinics respected in our state, seen several different nutritionists, dietitians and 2 different GIs. This particular feeding center is in another state (super complicated with our insurance) and only sees new patients and does 2 hour intakes on Thursdays (when most people work).

We are starting 2010 with hope and an appreciation of our health. Happy New Year to you and yours.