Almost....

Had a great phone call this morning.

This phone call came along at the perfect time. I was super anxious last night about our monthly appointment with our feeding specialists at the hospital today and did not have high hopes for continuing tube free. I could tell he hasn't gained this month and Adam has sometimes come home this month with almost a full lunch, which indicates that some school days he is going 10 hours with very little food and drink.

Yesterday we went to a sports bar and met friends for Steelers and Eagles football and drinks and had Adam with us. There was a very friendly crowd yesterday watching the games, and a guy bought Adam some ice cream. I immediately panicked. I didn't want to seem rude, nor do I want to discuss with an overly friendly happily buzzed strange crowd why my 5 year old is not going to eat ice cream or candy or any treat. In fact, he will not even accept this with a smile but will seem disgusted. I tried to get him to have one lick and exchanged glances with Phil, who snuck some of the ice cream quickly into his own mouth so as to make it look as though it was being eaten. We just didn't want to seem rude and we really were enjoying ourselves and didn't want to offend anyone or change the mood.


I know that several of you are thinking, yay, that's great that he won't touch that stuff. It's not. It's not great at all.  On so many levels and for so many reasons it's not great. He needs textures and stickiness and new and various temperatures. Adam needs chewy and all this would help his speech and muscles in his mouth and jaw that would improve everything feeding related and well, it's just not great. It's not great because he would act the same if it was a cupcake or a carrot. Socially it's awkward and neither extreme is healthy for anyone.

I didn't even realize how much socialization was around food until I had a child with a food disorder.
At our feeding appointment today we were discussing, again, with the pychiatrist how interesting Adam is to them, these experts. How can he not recognize hunger nor take pleasure in any food?  I don't find this interesting at all.  I find it frustrating. I love food. Not all foods, not food for food's sake, but a delicious meal is pleasurable. One of the great pleasures in life. Cheese is amazing. It's a delicious food. Add wine and some great crusty bread and I'm in heaven. It's frustrating for me- often I am thinking that if he could just give it a chance, he would love food that I just need to find that perfect food.

This morning just before we were going to leave for our long appointment the phone rang and Adam ran to answer it. Phone calls always make me laugh. Hardly ever does anyone call our house line so it's amusing to me to have someone who is trying to sell me something wind up talking to my speech impaired child on the phone. It cracks me up. 

Today he was answering questions with the caller and he was smiling and nodding and talking like he knew this person, so I was curious and asked for the phone. He replied, "No, Mama, It's for me. "

I was like, um... dude, you have like 2 friends and I don't think they can call you yet. I asked him for the phone and this time he handed it over.

He was sort of right. It was for him. It was actually his pediatrician. The doctor was laughing at this phone call and was genuinely speaking to his patient and said, "I still can't get over how far my buddy has come".

The pediatrician was interested in seeing if I would serve on a panel and be available to assist and help other parents in the practice from time to time, maybe have a support group/meetings and offer advice/work with families like ours. If I was willing- he is still sorting out details, but obviously I said I would help anyone anytime.


I hung up the phone feeling great and left for the 45 minute drive to see the feeding gurus.

It's been two months. Two glorious months of no tube feeding at night. August was a great month, we checked in for our appointment at the end of August and he did not lose any weight so they gave us the green light to try another month.

September is a little harrowing. It's hectic, we all have to adjust to the new schedules and Adam has a long day. The little bugger is tired. Kindergarten is wearing him out. He often falls asleep on the way home from school and actually admitted that he misses nap time.

We checked in today for our monthly appointment and he lost weight. This is no good. Not even a little bit.

The specialist doctor and psychiatrist both were in agreement to wait another 8 weeks before resuming those tube feeds in order to collect more data and see if we level out after that crazy first month. Phew. Four more months to go and then we might get rid of that feeding tube....

 So close I can taste it.

Spoonful of Sugar

"I did it! I took my medicine on a spoon!"

Yup, he did it. After much coaxing and bribery. Since August 1, 2012, we have had no tube feeds at night.  

To get rid of Adam's feeding tube inserted into his stomach, we were told we had to not use it for 6 months and get through an illness. We were not ever close before. As far as Adam's life priorities, we worked on breathing. His first 2 and a half years were filled with surgeries to eradicate his tracheostomy. The last 3 years have been trying to get him to speak and eat. We have done feeding clinics, therapies, entire summers away at "eating school". In 3 years he has gone from 100% fed through a tube to this week, this very week- nothing from a tube.

In mid July, he had a surgery, a tonsillectomy. We traveled to Philadelphia (CHOP) for the surgery- it was the same doctor that previously operated on his airway several times. She recommended that his tonsils be removed. They were enlarged and their removal might help him swallow easier.

The recovery was about 2 weeks. They said it would be about that long, and it was.  He is never a good sleeper after an operation and he complained about the pain. Eating is always a problem, so we were grateful (again) for his feeding tube to keep him hydrated, fed and comfortable. Really, he wanted to lie around and watch movies, color and was pretty unplayful for the first full week.

We followed up with his doctors after the surgery and after he weighed in, they said to stop the night tube feed starting August 1st. He goes back to the doctor  (and the eating centers) the end of August and if his weight is ok, then we will go another month and so on.

We still use a feeding protocol, but it has progressed in the past few years. He still has his 3 meals (breakfast, lunch and dinner) in a structured environment but we have 45 minutes to complete the meal. We still use particular phrasing and wording, but he now sees the entire meal and drink at his place. He gets rewarded after each bite that he takes himself. He tires out and we always feed him the last half of the meal. When we feed him, his rewards are more like a slot machine, unpredictable. We also have a chart where he can have long term rewards for eating fast. The rewards are no longer for accepting a bite of food in his mouth, they are now for swallowing quickly and for feeding himself.  He also can eat somewhere that is not home. These meals are terrible in quantity compared to what we can have him eat at home, but he will sit and eat a few bites of food and will drink his milk where ever we pretty much are.

I know you might not fully understand the hugeness of this , but if you go back a few years and read some older blogs, you can see where we were.

It's been one week and it's so strange. The biggest thing,  is that this entire first week of August, Phil and I went to sleep together. I can count on one hand the number of times that Phil and I went to sleep together in the past five years. They were all times that we left our kids and went away for a night or a weekend. I don't mean "sleep together", I mean actually go to sleep together, you know get ready for bed, roll down covers, climb in, say goodnight, turn off a light and go to sleep at the same time. We have never ever done that until this week. Basically, Adam had a trach (see previous posts about all that) and the past few years Adam has needed either a night feed and a morning tube feed or a night feed only. The routine has been that I do the morning feeds. I have no problems getting up early. Philip is okay staying up late and although often doesn't "sleep in" because of work, will sleep later in the mornings if left to himself. It worked well for us.  I have been going to bed alone for five years. It has been the weirdest week. The first several nights, we both were in bed sleeping by 8:30. Seriously. The minute Adam fell asleep, we discussed the strangeness of it, but we really were tired. It is as if we were trying to jam five years of sleep depravation into this past week.

The other strange thing is that at the end of the week, we went away for a few days and I felt like we were forgetting things. There was no feeding pole, no feeding bags, food supply, no feeding pump, or cords.  I still packed a syringe and an extension set, but that can fit in a small  evening clutch bag (not that I use one for that purpose); it's nothing compared to the pole. I mean, that pole dictated the cars we bought. We know it fits perfectly inside the Grand Caravan standing upright and the wheels fit great and everything and he could have a feed while driving in that mini van. When we got rid of the minivan two years ago and were looking for new cars,  the feeding pole height was on our criteria. Can the feeding pole fit upright for long car rides? Can we feed him with the pole and pump? We ruled out vehicles that seemed great strictly because the pole would not fit. Yes, they make these little backpacks for people with a pocket for the pump and all- we have one of those, I've had to hang it using a clip from the backstop at little league games to feed Adam, but it's pain in the ass to clean the bag and wind the tubing through and in the car, the pole and pump is the best. We drive a CRV. It fits the pole standing upright with the wheel base. It's because that car has this center console that folds down or up- it's not a solid console in the front seat, so the wheel base fits nicely and the height of the interior of the car works with the pole. I'm not kidding. It's one of the reasons we drive one.

The last strange thing and the challenge this week has been to get Adam to take medicine on a spoon in his mouth. He has been on some medicines these past 5 years that are tough to taste, and we are grateful we can just put it through the feeding tube. We switched medications recently anticipating this as a goal to a few medicines that we can mix into his chocolate drink and they don't affect the taste. (on a side note- our pharmacist rocks. We have been going to an actual pharmacy, like not a chain since Adam was born and this small town pharmacist is awesome and we get more care that I know we would never get from a big chain - in fact, I could do a whole blog to our great small independent pharmacy's greatness over the past 5 years) Despite the pharmacist's knowledge, there are a couple of medicines that he's just got to take by mouth. So, this week, at 5 years old Adam took his first medicine ever by a spoon. He didn't spit it at me. He swallowed it and had a chaser of water. He cried and carried on a bit and was scared and it took a fairly long time but he took it each day this entire week.

This is huge.

We are taking this one month at a time and I don't want to get too comfortable with this glorious new scenario. Just in case. You know, I got to protect myself from the disappointment. Got to play it safe until the next weigh-in.  I need to be cautious, I don't want to be too upset if the night feeds have to return.


Hey, but wouldn't it be nice if it lasted?

I am a rockstar.

I've got the rolley on my arm and im pourin
chandon …. cuz i got it goin on.

Yup. That’s how I feel right now. Like a boasting braggert rockstar and there ain’t nothing like it.

This morning was Adam’s iep meeting. He does not qualify for services. Let me repeat that. He does not qualify for services. Holy shit, batman.  We freaking did it.  In case you don’t know how it all works, when a kid is under the age of 5, and disabled, they are given the label “preschool disabled” and given services depending upon what everyone thinks the kid needs. Then upon turning 5, they get tested. The kid has to fit one of 13 categories. The kid gets labeled and services are provided based on what everyone thinks the kid needs. (fighting can occur over what everyone thinks the kid needs).

They went over their test results. He took several tests- tested by the psychologist, and a LDTC (Learning Disabilities Teacher Consultant) and a Speech Therapist gave him Language and Speech tests. He took cognitive assessments and tests on what he already has learned. He performed in every single subtest in either the average range or high average range. He was seen in his classroom and is social and discussed many things with the examiners. He has friends and focuses in class. He loves Karate and swimming.

The 13 categories are:

·         Auditorily impaired

·         Autistic

·          Cognitively impaired

·          Communication impaired

·         Emotionally disturbed

·          Multiply disabled

·          Deaf/blindness

·         Orthopedically impaired

·          Other health impaired

·         Social maladjustment

·         Specific learning disability

·          Traumatic brain injury

·         Visually impaired

Adam does not fit any of these 13 categories. Yes, he still has feeding issues and a device surgically implanted in his stomach (g-tube) but it does not effect his learning and education at this time. Yes, we have no idea what the future will bring but- he does not qualify for services.

He was born 14 weeks early, weighing 1 pound and 4 ounces. He spent over six months in a hospital. Received a tracheotomy, which he had for over 2 years, where he could not make any sound out of his mouth at all for his first 2 years of life. He had occupational therapy, physical therapy and speech therapy for his first 3 years of life every week. We had nurses in our home for 16 hours a day for 2 years straight. He spent an entire summer receiving 4 therapies a day. Once a month he goes to see therapists and experts. He follows up every 3 months with his eye doctor, gi, ent, pediatrician and pulmonologist. He has had 8 (I think?) surgeries. He has spent the last 2 years attending 2 different schools each day with one on one para, trained highly qualified teachers, push in and pull out speech services and an inclusive setting in the afternoon.

We have been trained in Pecs, beginning sign language and read a lot of crap. We went into debt. Crazy debt. I took 6 months off of work, Phil took 2 years to do a different job altogether with a huge paycut. Matt has been the greatest big brother known. We have had our family and friends help us beyond anyone’s imagination.

Today they told us that Adam will go into regular kindergarten in September.

Our attorney was shocked, pleased and couldn’t believe that this was the same kid she worked and fought for over 2 years ago. I cried. Both of Adam’s teachers cried and hugged me today. The nurse cried and hugged us. At Adam’s inclusion setting, the principal cried. She said that she remembered him from 3 years ago. He couldn’t even say any words, he used his pecs book and had tantrums refusing to stay in his seat. She hugged me and cried and said how amazing he is.

Now, I’m not sure what the future will bring, and I know we still got some stuff to work through, but today, today we were rockstars. I’m a bragging and a boasting and a toasting.

Here’s to a crazy freaking 5 years.

do right

Adam is finishing up preschool this week. Next week is Adam's iep meeting. As I mentally prepare myself for what’s to come in September, I am reminded of where we’ve been.

Just before he turned three, we sent a letter to the public school system and requested that he get tested. Adam was already having early intervention and therapy sessions, was tested and to no surprise was found eligible. He was classified “preschool disabled”. We had his iep meeting and agreed to placement in a self-contained preschool program in public school for half a day.

I consider myself middle class, and the idea of hiring an attorney to help us navigate the public school special education world seemed very elite.  We are public school people, not private school, nanny people. I’m not a Kardashian, I don’t have a family attorney, a yacht, Louis Vuitton luggage.

I didn’t even use an attorney when I got divorced…twice. We went through a mediator to save money and we filed the paperwork ourselves.  Also, I am a teacher. Not just any teacher, but a public school, special education teacher and Phil is a teacher in a public school. Dare I say it, but we are overeducated. We are well read. We can totally handle our son (then 3 years old) getting tested and entering into the world of ieps and public school. I can read the parent book they gave me. I got this.

Within Adam’s first week of school in May of 2010, all of the following occurred:

Ha. Now I don’t want to name names, or point fingers, As Beyonce sings, “I don’t want to diss you on the internet cuz my mama taught me better than that”. I’m not going to list The Top Ten Ridiculous Things Said To Us By Public School Employees. Know that there could be such a list, they are real and they happened.

I got very upset and angry during Adam’s first week of school. Rules and laws weren’t followed and ridiculous things were done and said that were simply f’in nuts. We were spinning in circles and trying to reason with people and were overwhelmed. I couldn’t sleep. I felt like no one understood. I contacted agencies (many long waiting lists and people are understaffed and overworked and there’s not enough advocates). I cried to friends, had long conversations with everyone. I was discouraged and saddened by the long haul that would be the next 15 years in public school.

My son is labeled preschool disabled. That already is an emotional thing for someone. I mean, as a pregnant mother, I had these visions of my child going off to play MLB, while winning a Nobel Peace Prize and finding the cure for all cancer while playing the violin blindfolded. You never think, oh, I hope I have a child who gets labeled and people limit his life.  When this label is thrust on you, you have a lot going on. It’s not easy to get back into perspective and to count your blessings and open doors. I was kind of wallowing in my own despair. I needed caring.

I work with really great teachers and a caring child study team and I was naïve to think that everyone else in the field of educating special children is that way, too. We were dealing with several people who didn’t love our child, didn’t share our philosophies on inclusion, on child rearing, on education. I could not take my life experiences and my knowledge and demand that they agree with me. Tie them up and hypnotize them so that they see the world the same way as I. We were frustrated by their ignorance. I also could not distance myself from it. I thought that all my special education training and education would help navigate this system, but rather, it didn’t matter at all. I became enraged. It was difficult to not hit people. And there was no escaping, it was all consuming. Every single part of my day was spent thinking and worrying and getting upset all over again and then the next day something else would happen and it would reboot and restart.

We hired a lawyer. Now, it’s not like we had the money for this elitism, like I wrote a check and actually had the cash for this. I believe that is why they have credit cards and that I am lucky that I didn’t have a crazy high balance from too much shoe shopping and we couldn’t really fathom a vacation in the near future anyway. 

The lawyer took all the worry away. The lawyer fixed it.

As a result, Adam just finished an amazing 2 full school years in a public school self contained preschool classroom with two amazing teachers and several amazing paraprofessionals and a dear bus driver who buckles Adam into his little 5 point harness and gave us her cell phone number and calls us on the phone. Phil and I can look back on those notes from just over two years ago and laugh now at the fear and ignorance in what happened. We actually were cracking up this past week remembering the crazy shit that people said to us during that time.

I have a supportive partner, an education, an amazing family support system, friends who kick ass, a job, am a native English speaker, am comfortable in the school as an institution, an outgoing personality, I have a good credit score and I speak my mind. They broke me down. If they did that to me, what hope do others have?

How does a parent who hates school and gets nervous with authority fair at these things? How do you know whom to call within this monstrous bureaucracy? How clear really is this process when you are from another country? What if you don’t have a job or resources? What if you don’t have friends and a supportive family network? What if you are embarrassed by your child’s label? What if you blame yourself? How long can you wait for a public advocate to get to you on the list?

That would be one of my many wishes, you know that daydream where you win like a bizzilion bucks and you help all if you could change the world wishes thingys.

The wish for everyone to just do right. 

He's 5.

My oldest son just turned 12 and he asked about when he was born. We pulled out the scrapbooks and we were cracking up telling stories.  Remembering Adam's birth does not bring about the same feelings. The actual birth of Adam was one of the scariest experiences of my life. I was terrified.

It was Matthew's 7th birthday and I had plans to go to get my routine ultrasound (the 20 week ultrasound, which I was actually having in week 22). In the backseat of the car, I had the sprinkle-covered cupcakes, which I was going to drop off at the founding father elementary school after the ultrasound and then head to work, all before 11:30. Phew. 

During the ultrasound, I was chatty with the technician and she was friendly enough, but at a certain point, she told me that the doctor should be in soon and she left. I, of course, am instantly scared and thought how my follow up with my doctor wasn’t today. The doctor came in, but it wasn’t my doctor and my anxiety increased.

I asked him what was wrong and he replied, "We will talk in a few". I didn’t know what that meant.  A few? A few what? He then said to me, “It appears as though there are problems with the growth of the fetus. You are not leaving this hospital until the baby is born".  My only reply was, "Are you sure, I mean it's my son's birthday I'm not due until the end of August and I have cupcakes in the car". I remember this. I remember asking him if he was sure, ridiculous now. It's funny, how you respond to news. I mean it's comical now that I was so concerned about those damn cupcakes.

The next 24 hours was a blur of information. I was told that I had IUGR. This is intrauterine growth restriction. This means that there is a poor growth of the baby, and that the baby weighs less than other babies at the same gestational age. Every week of gestation and every pound makes a huge difference, decreasing the chances of problems dramatically. The baby was not getting enough oxygen and nutrition because the blood flow through my placenta was intermittent.  This was not my fault (I have to sometimes remind myself of this) There was no reason for this and later my placenta was sent to a placenta pathologist, I had no idea there were such people (eww gross) and again told, no reason discovered. 

My baby was starving.

In the next 24 hours or so I had visitors. Neonatologists. I was told that the baby had small femur bones and a few other indicators that he might have Down's Syndrome. I was told statistics that a baby born this weight, with IUGR, this early, increases chances for everything. I mean everything. It's not just that he was going to be premature, but he also had this starvation thing. He had so many chances for so many things. They went over blindness, lung issues, brain bleeds and on and on. The bottom line and number they gave us, was that he had an 85% morbidity rate.  We knew something was going to happen to this baby, He wasn’t going to be healthy and “normal”. No one could tell us what was going to be “wrong” with him, but it was going to be something- we just didn’t know what he was going to get.

The ob/gyn explained to me that it was advisable that I never have another baby. Once they deliver this baby, via c-section. The uterus would be cut vertically. This is because I was not far along at all, so the uterus wasn't stretched. I would have a vertical uterine incision that would leave scar tissue. Another pregnancy might result in the placenta possibly attaching to this scar tissue (good chance) and that would force an early delivery (another preemie see above possible scenarios), careful monitoring, and a possible ruptured uterus and a potential hysterectomy for me.

And so it was. 

This was the last baby I should give birth to and something will be wrong.

In the hospital I now had a team of specialists, high risk doctors called maternal fetal medicine expert something. (whom I humorously referred to as the MFs). Also, one of these MFs was the father of a former student of mine. Slightly awkward. They visited me each day, along with their medical students, residents and more. Each morning an ultrasound technician would come in and they would do an ultrasound. I also had an ultrasound in the afternoon. I was pretty hooked up to stuff and was told to stay on my left side as much as possible. I was in the hospital this way for 12 days. On the morning of May 16^th, the technician came in and was doing the ultrasound and noticed that things were not good. Buttons were pressed, nurses were called and we were off.

My regular ob/gyn was there in a flash and was jogging next to me along with the nurses, and we went straight into a delivery mode. I was alone and the nurse held my hand and said she wouldn’t leave. Someone called Philip, I suppose, because they said to me that he was on the way. The room was pretty crowded, I remember seeing a lot of doctors. They needed doctors and nurses for me and neonatologists and nurses for the baby, anesthesiologists and more. I remember feeling crowded. It was a C-section. It was tense. A nurse never left my side. It was stressful. Adam was taken away. Phil went with the baby. I was left alone to be stitched up, the nurse offered a few words of comfort. There was no laughter, no joy in the room. I was terrified. I knew he was alive, but that was all. I couldn’t really talk, tears rolled down softly. I was brought to a recovery area and my mother and Phil were there and I asked them if he was still alive. He was. They wheeled me to see him. I couldn’t touch him. He was hooked up and plugged in and his bed was covered with saran wrap. He weighed just over 1 pound (665 grams) and was born 16 weeks early.

In remembering this day of Adam’s birth I am reminded of the amazing abilities of all the nurses and doctors that day. After recovery I was brought to my room where the roommate had given birth to a healthy baby and the baby was there. I really couldn’t handle it. I couldn’t speak. I just was crying, but quietly crying so the woman and her family behind the curtain couldn’t hear me. I didn’t want them to ask me anything. A nurse came in and was horrified that I was placed in this room. She didn’t need me to explain, to speak. She understood and instantly made arrangements and moved me.

Whenever I remember this day and all it brought, it is easy to immediately return to that place of sadness and fear and terror. I couldn’t imagine at that moment what the next five years would bring.

If only I could go back in time and speak to myself. The future me just reaches over the curtain and speaks to me, as I lie trying to cry quietly into a pillow alone in a hospital bed, I would tell that woman, I would tell me, “There will be worse days, but it’s all going to be fine. This baby, Adam Marcus, is going to make you laugh. This child will live. He does have some imperfections, but he is going to live and you and Phil are going to be stronger than you think is even possible”

“He is going to take Karate, and ride a bike. He will sign “cheese” and later make a sign for his door saying do not enter.  He will argue with his brother, throw a ball and dance. He will learn the alphabet, blow kisses, make machine gun noises, build a sand castle. He will throw vomit-inducing tantrums and tell you he wants to be a penguin when he grows up. "

He will turn 5. 

There's a great future in plastics.

I am quirky and I certainly don't know where all my different likes and dislikes came from. Well, I don't know where most of them came from. Some I can place, for example my love of the smell of tobacco. It makes me feel safe and like a 9 year old. If I'm in a main street kind of town or shopping in a NewHope-esq place, and see a tobacco shop, I must immediately enter and hear the bell chime. Taking deep Yoga stomach protruding inhales and exhales of tobacco scent is calming. I almost always buy an empty tobacco box, as demonstrated by my boys' containers for gogos, tech techs, army dudes and baseball cards. These might not be the safest toys, but my boys really do hoard little stuff and they are great stuff holders. Also it makes me feel less freak-like for entering the store just to do some breathing poses. I know where my love for tobacco smell comes from. My grandfather, my Dziadzi, smoked a pipe. I freaking love that smell. I instantly am transported back to my grandparents' house for a Sunday dinner of roast beef and mashed potatoes.

There are two big quirks that Adam has: a love for plastic and sand crabs. Sand crabs? huh? Let me explain. When Adam was born, he was uber- tiny. Like a pound. In the beginning of his life, we weren't allowed to hold him. And in the NICU, they would place beanbags on him while he was in the little incubator, which we affectionally (and quite overwhelmed with medical bills) nicknamed his "million dollar condo".  I suppose this was to keep him feeling safe, and warm and more comfortable. He would sleep all the time and they would pose his limbs around these bendy soft tubes and place beanbags on top of him. Here's a scary looking picture of him, the heart fabric are actually beanbags on top and around him.

 

What happened as a result... well, when Adam sleeps, he must dig himself into tight spaces. In his crib, he would wedge himself in the most dangerous corners and when you held him, he would dig his arm into your side and tuck it under your shirt. As he got older, and now in his big boy bed, he sticks his legs between the mattress and the wall, often wedging his body in "the cave", this tight spot. Most nights he gets up and climbs into bed with us, often between 4 and 6 am. Once in bed with us, he wedges his limbs underneath us, I am so used to this, that in my sleep, will feel him digging into me with his foot and I will strike a modified side plank yoga pose, while he slips under my legs and my back and sometimes will dig his arms into my side so hard, I feel I will have internal bleeding. We have affectionally named this "sand crabbing". If I wake up and yell, "Ow, Adam, stop hurting mommy." He replies, "I not hurt you, I just sand kwabbing" Ok, I sigh and I place my back over his legs. On a bad night (where Phil ends up half on the night stand and I wake up horizontally across the foot of the bed), we remark while yawning, "Adam was a bad sand crabber last night".

Besides crabs, Adam also loves plastic. Again, this comes as no surprise. When he was born, as seen above, plastic was everywhere. When he got his tracheostomy he had a plastic mask that would be around his neck, pumping in humidity and oxygen. You can see him doing tummy time with his plastic mask and tube.

In that picture, it's a bit too loose, but, his tube and mask learned to crawl and walk with him. He would go to sleep, hands wrapped about that tube, which we named, not so cleverly, "tubey". He and tubey were buddies. If you moved him while he was asleep, he would clutch that tube as quickly as possible and rest his hands around tubey. Of course, it was enabling him to breathe and survive, so it's understandable. 

Adam has a few stuffed animals and blankets and such, but just today, Phil and I went on a run. Phil was pushing Adam in the jogging stroller and Adam asked if we could lower it so he could nap. He also asked if we had his batman plastic figure, so he could hold him while he slept. This is normal for him. He sleeps with a hard as..., well, hard as plastic, Buzz Lightyear and will be known to take a vehicle or two into bed. 

So, while my boys will grow up with many quirks (as we all have), I find it interesting to know exactly where these two came from and it's kind of cool to see how events directly from infancy and birth have effected him firsthand as a toddler and preschooler. That being said, I sure hope it doesn't develop into an adult love for life size mannequins that he weights down and sleeps under. Although, if it does, I'll know just where it came from and will, of course, pay for overwhelmingly high psychiatrist fees. 

Playdates

When my oldest was younger, we were always having playdates. Matthew would talk about kids in his daycare, we knew their names, weekends filled with adventure playsets and playrooms with wall to wall. Matthew went to a ridiculous number of birthday parties and that led to more friends and more playdates. It was like a revolving door of chuckegymboreebouncehouse fun for his first six years.

Adam however, in stark contrast, has very little playdates. The playdates we do have are really playdates for me, when I am getting together with my friends who happen to have kids ranging in ages and we throw them all in a room while we laugh and catchup. Adam's birthday party invitations are mostly ignored. I see them and immediately groan. An invitation to a chuckegymboreebouncehouse party equates to illnesses requiring nebulizer treatments and an antibiotic. Matthew spoke about friends and shared school stories, but Adam doesn't know any kids in his school. We ask him for names and he will tell you he played with his "best friend", but " I no member his name".

There is also a disconnect, because he attends two schools, it's hard to be involved in one school, and with two, I think I just rationalize with, well, I'll get involved when it's 'for real'. When he's is elementary school.

One school, the special education school, he attends part time and based on the flyers that come home, no one must work, but me. They have fairs and luncheons and tea parties and book sales and petting zoos, that are all during the day. I envision mothers with cool hair, coach sneakers and stylish totebags volunteering at these functions, meeting other mothers and having their special education children connect and flourish.

The other school, the regular daycare school, is difficult because he is only there in the afternoons and maybe it's his part time attendance that fails to connect us, but the other kids seem so 'normal' when I go to get him. They speak so perfectly and I can't help but feel as though they might not play with him. The kids can't wait to tell me what Adam did that day that was inappropriate. Several kids will run up to me when I get there and tattle on Adam instantly. "Adam's mom, Adam hit me today" or "Adam had to say sorry today". The teacher shushes the kids and shoos them away and then occasionally will mention something to me, but often she just smiles and knows that it's not major enough to warrant a conference. Communication does impact relationships and I imagine those kids are like Matthew, playing with the kids they see all day long, not mentioning to their mothers that they need to play with  the kid that comes half the day and talks weird and doesn't always listen.

There is this one kid, a boy, who I discovered takes the bus with Adam in the morning to the special education school. In speaking to Adam, I learned this fact. My face lit up when he told me that his friend on the bus also played with him at "afternoon school" in the sandbox. Could it be true? Another special kid, perhaps this kid could be a friend? a playdate? I wrote a note to the mother of this child and gave it to the teacher. Then drafted a second note. Yes, we had his name completely wrong. Adam thought his name was something else. Right boy, wrong name.

Daniel's mom and I tried to set up a playdate for weeks via emails and texts. Yet again, another obstacle to our world. When you work, and your kid has delays, there's a whole lot of appointments and some days, you think it will work, but your kid feels otherwise. Finally she and Daniel came over. It was a fabulous two hours.

Daniel's mother is from South America and had many questions about the education system here. Her son's iep meeting was coming up and she had questions about what it meant and what to do and what options were open to her. I shared my knowledge and answered her questions honestly. We discussed and shared how we as mothers blame ourselves for our children's disabilities, shared the obstacles within our families and cultures and discussed that this disability thing is difficult to manage along with being a parent of a preschooler. We complained about parents bragging and their fake complaints, we shared stories of our children's difficult toddler years. Tearfully we talked of dreams for our sons and how far they each have come. We were hugging and thankful for this connection when it was time to leave. The boys played wonderfully, they had few issues and were adorable in their play, it amazed me that they connected so well and seemed to be on the same page laughing at jokes that only the two of them understood.

There needs to be more of this. Yes, there are clubs, groups, social networking sites for all this, but in reality working moms of special education kids are freaking busy. We are busy blaming ourselves for the disability that most free time we have, we are overcompensating trying to fix the disability with play therapy, letters, sounds, reading books, and teaching our kids or we are taking a mental and physical break and escaping from the madness of it all.

I promise to try harder to find more mom playdates and to connect my son to more friends. It was one of the best two hours of my week.

Damn Weigh-ins

We had off for President's Day, so obviously we made as many doctor appointments as possible. One was our monthly visit to "Eating School". This is where Adam sees a nutritionist, doctor, nurse practitioner, and behaviorist.

At February's visit he lost weight.

They said to change nothing yet, just keep the night feed the same. It doesn't mean anything. It is just one pound.

At March's visit (which was really April, because I can't take even one more day off of work and so the appointment was on Easter Monday) he did not gain any weight. He didn't lose, but he didn't gain.

That's no weight gain in 3 months.

We have to increase his night feed.

This depresses me for a few reasons.
1. It's not moving forward, it's not closer to removing that damn Mic-key button. I am so freaking sick of people asking me when it is coming out. stop asking me. I don't have a fucking clue. I am doing the best I can. Back the fuck off.
2. I know that the longer it's in, the more dependent he gets with it.

I am trying to stay positive, like self talking that we can bulk him up. He is having surgery this summer, so this way, we can pack on the pounds and all. He's still only four. Look how far he's come and all that smiles self-positive upbeat talk, but really?

really it is going back a step and that sucks.

Mic-key Button

Adam has a Mic-key button. It's how we feed him at night and it's basically what kept him alive for years while he had his trach. If you google images and Mic-key button, you can see pics and I'll try to take one of Adam tomorrow with his button. It's basically a little plastic piece like the part of a beach ball that you blow up and it has a deflated balloon. He has a hole in his stomach and you place this device inside the hole. Then, while keeping it in the hole, you stick a syringe (filled with water) into the side of this device, the water fills up the balloon and that water-filled balloon keeps the button in place. You know, otherwise the plastic piece would fall out of his stomach.

I'm not real sure if I'm explaining this properly, but it's a part of our life. Everything is relative. This button is amazing. When he first got the trach, he was like a little baby, the size of a 3 month old and at that time, he had a feeding tube that was inserted down his nose and we would feed him that way. He would constantly pull the tube out and cough it out and Phil and I would have to insert it back into him and use a stethoscope and air and syringes and check for placement, and confirm that we put it in right, before we would feed him. We worried that it wouldn't be placed right. Saying it was stressful is an understatement. You know how babies move while you are changing them, well, you can imagine putting a feeding tube in your baby's nose- it wasn't like he sat still and said, "Yay, please insert this tube down my nose into my belly".

 The surgery for the mic-key button was awesome and a huge improvement. It's amazing.

It's been there inside of Adam for 3 and a half years already. When he is sick, it is useful in preventing dehydration and giving him medicine. Last week he was sick with a fever and sore throat and we were thankful for it. Sometimes, I think all kids should come with one.

However, as he is getting older and better at eating, we are using it less and less. Adam has said to me, "Mommy, I am going to be sad if I don't have my button, " or he will say, "I love my button".

I suppose at some point whenever it is ready to be taken out, this will be a big deal.  It's a part of his body.

These get changed. If the balloon doesn't pop and it doesn't get stuck or fall out, it gets changed every 10-12 weeks or so.

Tonight was one of those times. It is harder and harder to do this. Before hand, we have to explain to Adam what we are going to do, that we are going to change it, just like he changes his socks or underwear, we need to take out the old one and put in the new one. We show it to him. He sees the supplies. He seems calm. He understands. He nods. We say it will feel cold. We confirm. We tell him it won't hurt. He is relaxed. He lies flat. He panics. He yells. He screams. He kicks. He punches. We have to hold him down. This fighting usually makes it harder to get the new one in place. Stomach fluid leaks out.  Tonight he was sobbing so much I thought he was going to throw up.

I'm exhausted.  My kids are badass.

Happy New Year. For real.

So last night, before Phil and I went to sleep, we were talking about some of our past New Year's. Namely the one that stood out was the one 4 years ago or so.

Adam was in Children's Specialized and he had been given his tracheotomy Thanksgiving weekend and it was now New Year's Eve. He was still in the hospital. We were still in the hospital. We had been taking turns since Thanksgiving, never leaving him alone. We were exhausted and overwhelmed. Phil left the hospital when I came at dinner time and he went home to sleep. I made my "bed" (the bench) in Adam's hospital room. I was turned it for the night and trying to get a bit of rest, with the beeps and the oxygen and the suctioning and my little 7 month old baby with a hole in his neck sleeping an arms length away. When what to my wondering eyes should appear but Philip. He had driven back to the hospital and came into the room to kiss me at midnight happy new year's style. It was lovely. We were so tired and cuddled on that little teeny bench making prayers and promises and pacts to do our best. I made lots of deals with myself that year, lots of please if we can get through this, than I'll.... whatever, fill in the blank with a million different things.

Anyway, point is we made it through that New Years and it was one of the best New Year's Eves I ever had. 

Today is the first day of 2012.  If I look back on Reflection on last January (see post)  January 2011 post Adam was doing great.

So, have we made progress in a year?

 YES!  Now, January 2012. He eats lots more than last year. We can add to the list: carrots, tomatoes, cream of wheat cereal, meatloaf,  ham, pizza, peanut butter and jelly sandwiches and m and m's.  He drinks 8 ounces of Carnation instant breakfast with whole milk 3 times a day and will ask for water during the day. The meals are less structured. We have cut his night time feeds in half since last year.  We go to therapy every month and will continue to make progress. 

On a personal note. This year, I did my first triathlon and my first half marathon. It was one of those... I promise I will exercise and be healthy I promise I will find time to do whatever I can to avoid being in hospitals again promise that started with a 5k.

Boasting alert: We also managed to do all this, while my main man took grad classes, coached high school football and worked full time (I also work full time). 2011 marked my older son's entry into middle school and I couldn't be prouder of him. of my little guy. and of us. 

Happy New Year!