Sunday, September 27, 2009

Our New Routine

So September is almost over and we pretty much have our routine down.
 It's a crazy one.

 I wake at 5am (or Phil, we take turns). We give Adam his previcid (medicine for reflux). He is in our bed, when he arrived is anyone's guess- usually 3ish. Then we start his tube feed. He gets 250cc of peptimin jr. (it's a high calorie, protein, kids' liquid food available with a prescription). It goes through his stomach tube (mic-key button) while he sleeps and usually runs until about 6:15am. 

During this time I am usually "resting my eyes." for a few more minutes, start the pot of coffee and get in the shower. I wake Matt at 6 am, and continue getting dressed, hair and makeup.

We wake Adam by 6:30 and are in kitchen by 6:35. Check that Matt has on matching clothes, teeth are brushed, breakfast eaten. We will toast a bagel to take "to go" and make our large "to go" coffees. Get Adam dressed, inhalers given, and grab lunches (all 4 made night before).

In car by 6:55am. We drop off Matt and sign him in and then drop off Adam and sign him in. This takes about 30minutes for both children. We are on the road by 7:30 and usually get to work by 8:15. The whole drop off is reversed and we pick them up and are home by 4:45pm.

Then we tube Adam again (since he doesn't eat at school). dinner, lunches are made following dinner cleanup,  homework (which is taking longer now - joys of 4th grade) baths, books and bed. Adam gets tubed twice more while he sleeps- last feed over by 11:30pm

Twice a week Matt has soccer- 2 hour practices, games Sunday. Phil works another job one night a week and one weekend a month. Piano for Matthew is one night a week. I try to get to the gym three times a week (and have actually done this all month).

Laundry and food shopping and running a vacuum are weekend activities if they fit.

There are usually dirty dishes in my sink, laundry in need of folding, beds are never made and kitchen floor can be quite disgusting at times, but my boys are hugged and kissed, and we always have time for playdoh, tickle fights and cuddles. 

Saturday, September 12, 2009

First Fall Illness

Basically Adam made it one week at daycare before getting sick. I am blaming the daycare, but Philip and I both returned to work this week (in germy middle schools) and Matthew returned to school (in a germy elementary school) so it could be all that, too.

I thought the hand washing, hand sanitizers, lysol spray, showers, clothes changing would hold off illness.  On Friday morning like 5 am, Philip woke me up saying that Adam felt hot. He was hot with a fever. We tried to do a temp under his arm, but he was too squirmy and I didn't have the heart to wake him up. Gave him tylenol and Philip called out of work.

We paid the babysitter half her pay. I went to work and Philip took Adam to the pediatrician. The pediatrician said he looked fine- no infections. Must be viral. He played fine during the afternoon Friday then vomited after bath. Today he was sick. His nose is all snotty, he's coughing, he vomited after dinner. We gave him his inhaler a few times today and some pedialyte after he vomited.  

We will most likely call the doctor tomorrow and may return on Monday to the dr's office. I will take off Monday and stay with him. The next step is some prednilisone. We keep it in the house for him, but need to call doctor if his wheezing warrants it. I listened to his chest, sounds a bit tight, but not too bad. 

I would like to get some flu shots soon, but we have to be well to get them and with all the media hype- I hope this isn't h1n1. He sleeps with a pulse ox monitor on his toe and his oxygen and heart rate are fine, so maybe it's just a mild cold. Even a mild cold is trouble for this house. 

Thursday, September 3, 2009


PECS is short for picture exchange communication system. I am NOT an expert on this or anything but it works well for us. 

Basically last year our speech therapist suggested it to us (then she left to have a baby and her replacement knew nothing of this program, but now we have an excellent therapist again who helps) Anyhoo. 

We took her advice and looked it up online (googling pecs gave us a lot of bodybuilders). We checked out demos on utube and then contacted the makers/trainers etc to find out about any training. It was like almost $500 for a 2 day training (which was in the Spring, and I had no more sick time left from surgeries, so I actually lost pay, too) But I contacted them and explained my situation and they allowed me to "work" the conference and register people in exchange for attending free.  How awesome! 

Because both me and Phil couldn't attend together, I went on day one. Came home and trained him. He went on day 2 and came home and taught me.

This program allows Adam (and others with communication issues) to "talk". It is a book and all kinds of pictures with velcro on the back. Adam goes over to the book, will find the picture of what he wants and hand it to me. There are systematic teaching steps involved and in the beginning we needed toys and things that he REALLY wanted. It also took two people to teach him this because someone has to be like invisable and guide him to the book and appropriate picture of the object he wants you to give him.

This summer especially he really got it. Like at first there were only a few pictures he knew and was kind of confused, like it was a game we were playing. All of a sudden, he turned 2 and the switch turned on. Now he walks over to the book all by himself (NO PROMPTING), will flip through 20 or more photos, find a picture of a train for example, take it off the book and stick it on a velco sentence strip. He will then detach the sentence strip and walk over (even into another room) and hand the sentence strip to a person. The strip might say I want trains. He gets so excited when we read the strip aloud to him and then play what he is asking us to play.
He now asks us for food (that is away in cabinets), toys, to go outside. 

One of the pictures has music notes and says music. At first we taught him this with actual music on a cd player. Then he would give e this card when we were out and there wasn't any cd music around so I would launch into some sort of kids song. He found this amusing and then would hand me this music card while I was making dinner- like the boss he is demanding I sing a song for him.  Sometimes I would not sing the right song. So then I blew up some photos from PECS that were songlike and created a larger laminated "song board". Now he will point to the song that he wants to sing. 

I really need to destroy Bingo.

Wednesday, September 2, 2009

First Day

Adam went to daycare. I  can't tell you how guilty I feel, how much I worry about him or the scenarios I painted in my mind. I think it went well.

First, we really worked at transitioning him. I took him to the school twice last week and stayed with him for 2 hours each time to play and hang out. Phil took him a third time. Then he went yesterday and today for 1/2 days only. My mom and cousin picked him up on each day around lunch time. Tomorrow he will go for whole day. Then we are off for 4 days. 

The plan is for him to go to school mtw. Thursday he is with my mom and friday he is with a babysitter. This is an expensive option, but trying to send him only 3 days hopefully will offer good rewards without the risks of illnesses that too much daycare might bring.

In the short two mornings he was alone in school he:

  • ate other kids' food off their plates
  • took milk and on purpose dumped it on the floor
  • tried to climb the sink and turned to the teacher and signed "help" as if she was going to help him
  • threw the ball over the rather high fence in the playground and then tried to scale the fence to get it back
  • when another girl was having a tantrum, he walked over to her, laid down on the floor next to her and began rubbing her back                                                                                           

Many of his signs are ignored (he'll go up to a 3 yr old and sign, "give me the truck please" and just get stared at) but i am hopeful that he might begin to say something soon.

Currently he says yes, mamama, and dadada (he does not know that is me or phil he just likes to hear himself make noise b/c it's so knew to him still.)