Wednesday, May 28, 2014

Our Special Needs Journey:Part 16 - Poop Happens!


I was joking the other day that if our family had a reality show it could totally be called "Poop Happens." Why is there so much poop going on in this house?! I know plenty of people with kiddos closer together in age than mine - still in diapers. Our pets are (mostly) potty trained. Yet the volume of poop we clean up here is crazy! The amount of crap that happens in our lives is a bit crazy as well!

I'm attempting to pack like a madwoman - I have less than 5 weeks left to sort through, pack up, toss out, or donate 13 years of things (we brought everything from our apartment here when we moved and have only done mini-purges over the years, leaving much left to do).

--- BRUCE ---

Sunday I heard a heart-stopping shrieking from my 15-month old. My poor baby had opened the oven and grabbed the grill with his hand. The ear piercing cries broke every piece of my heart. Dan had turned the oven on about a minute prior. Dad and Big Sister were in the kitchen with Mom nearby at the table and he still managed to get into the oven! How does that happen?! Over a week later and I am still in tears thinking about it - my Mommy Guilt-ometer is off the charts.

Breaks my heart!

He cried for HOURS - and so did I. It was a 2nd degree burn and the nurses said he was a very lucky boy. If the oven had been on any longer/hotter it would've cause nerve damage. It terrifies me because I cannot seem to keep up with this guy these days! He is wicked fast, sneaky, and curious (in other words, he is a toddler) and my attention is pretty divided these days.


 All wrapped up and sleeping - how sweet is this boy?!




So Bruce kept getting his wrap dirty or using his teeth to pull it off so I gave it a clean wrapping and covered it with Glad Press n Seal. I've done this every day and it works really well to keep it cleaner, dryer, and ON.



 Here's Brucie at snack time during his special ed class at the same school big brother Dean goes to!


I mentioned a couple weeks ago that Bruce saw the school district audiologist during his special ed class - and there were some concerns. Actually way back when we saw Genetics Bruce was referred to ENT/Audiology. Today the Audiologist checked him again -- his right ear gives a slight reading, meaning he can hear but it is either impaired or has a blockage such as fluid or ear wax.  His left ear, however, gives a flat line on this machine thingy.  She said to be cautiously optimistic that maybe there is fluid in his ear and tubes would improve his hearing. She also prepared me for the very real possibility that my son is deaf. Well, in the left ear anyway, partially in the right.  I know he can HEAR I am not sure how well.

The good thing is knowledge is power and today's technology is amazing. He's all set to see the Big Wigs at Children's next month. And if a hearing impairment is causing his drunk old man walk and his tantrums and frustrations and speech delays then it is good to get him the treatment he needs, right?! Okay, pray for this sweet baby and this anxious mama, k?!

---TAYLOR---

The 20th was my Taylor Tot's 10th birthday. Ten! As if I haven't had enough Mommy-Fails this week I managed to make ALL FOUR of my children cry before lunch. I know she's the birthday girl, and I am TRYING, really, really trying to give her what she needs to succeed.  I am on my knees daily begging God to equip me to parent this challenging child.

She manages to make fun things miserable all the time. I say that with total acknowledgement that she is very much like me. She refuses to DO anything. Yesterday, for example, it was noon and she was STILL in her overnight Under Jam and PJs. Her schedule is written out, the same every day. She had eaten breakfast and taken her pills. No hair or teeth brushing. No clean clothes.

Shit hit the fan when she asked to play in the pool and I said "Sure! After you finish your morning routine!" You'd have thought I asked her to build the pyramids or some impossible task. She just sat in the living room crying. And shouting. And refusing to move. For hours. Well, she moved, but only to pick at her scabs.

She did report that it was her best birthday ever, so I'm very glad I was able to spend some time with her and a friend at Mall of America.  Who knew Build-a-Bear, fancy soap from Lush, a book and cupcake from Barnes & Noble, and a couple dozen Dollar Store balloons would make her so happy?!

Met with the Pulmonologist this week and he is convinced the mold in our home is a contributing factor in her breathing difficulties. So I'm pretty jazzed our new home does NOT have mold! :)

---- DEAN ---




Dean is a goofball and doesn't like to let me get a "normal" photo of him. Fair enough. This boy is definitely not normal - in the best way possible. :) He's always had failure to thrive and tummy troubles - a recent colonoscopy revealed he is dairy intolerant. Poor guy, we've been shoving milk products down his throat for years in an effort to put pounds on him, making his tummy hurt.

Dean is 5 now and has never pooped in the toilet. When he wears Pull-ups during the day he will pee in them as well as poop, and undo all that work of potty-training him (for pee), but I have to throw away A LOT of underwear. He has foul-smelling, liquid, black, greasy, and often bloody stools several times a day. It is so uncomfortable for him to be wiped up that he will hide that he pooped and when we do change him he uses all his strength to kick me, wiggle away, or hit me.

This morning I woke up COVERED in liquid poo - Dean refused to wear jammas last night and had crawled in my bed in the middle of the night. Seriously, it smelled like death - and it was oozing all over the bed, me, the baby, the crib (side-carred), the clean clothes I had just folded and put in the crib (why do I have a crib again?!), and a cat. The process of cleaning this up - by myself - is quite...messy.

Recently Dean has begun pooping in the bathtub. Not exclusively, as he goes multiple times a day, but often. I learned at his appointment with the Gastroenterologist that he is doing this because he is relaxed in the tub -- and this is a good thing because he is beginning to recognize the sensation of needing to go.

The GI doc showed on x-ray where he is (TMI ALERT) very constipated - with poop all the way up the intestines. Only the old poop way up at the top of the intestines that hadn't formed yet is coming out each day - which is why it smells and looks so gross. (Think moldy bread but with poop. Eeew.)

The doc explained that children with developmental delays, like Dean, have a "dampened" sensation of needing to poop - especially boys because they don't often SIT on the toilet. The bowel cleanse we are starting today should help -- he will get the old stuff cleaned out (helping with his tummy aches) AND the mild cramping that he feels when he poops will help him learn what the sensation is like and become toilet trained! We will sit him on the toilet 3 times a day, aiming for same time every day, and using his picture schedule to encourage that in his routine. Optimistically he will be fully toilet trained by the end of summer!




 


The kids had a blast at the Minnesota Children's Museum (and the softball tournament, and the park, and our backyard pool) and I have never been more grateful for PCAs than this past weekend.  I had an IBS episode/tummy attack. I spent the better part of 4 days in a meds-induced coma attempting to sleep through the pain while the PCAs parented my children. It's so nice to have help sometimes.

Oh, the Genetics Clinic called and test results are in. None of the kids (the older 3 were tested, Bruce was not yet) have Fragile X. All 3 have a benign mutation of a chromosome. Something genetic passed along from Dan or me that is fairly typical as far as abnormalities go. It is not believed to be a contributing factor in their disabilities. Taylor has an additional mutation that IS of concern and will be explained to me more fully at their follow up appointment in July.

We will see a Genetics Doctor in July, Bruce will get the whole work up too, and they will examine other factors - like appearance and bone structure, etc. We will see what comes from all this...

--- JULIA ---

Oh, and to end on an encouraging note -- Julia has gotten her weight back up to her hospital discharge weight and maintained it for a couple weeks!  Whoot Whoot!