Talk about pressure

http://www.schizophrenia.com/hypo.php

Ugh. Today I feel as though I royally screwed up. We try so hard to minimize Josie’s anxiety (normally she has none). But today we laid her down for her nap (usually a solid 2-3 hours) and started cleaning out our storage closet. Well about 45 mins went by and I asked Brian to go check on her just in case; well wouldn’t you know she was in hysterics bc she woke up and no one came for her. I don’t know how long she was crying, if she was retching, if she was scared — she had a ton of air in her belly when we vented her. And she was inconsolable for a couple hours. She totally refused me for the rest of the afternoon. Didn’t even want me near her. She did get over it. She was smiling and fine and went to visit grandma and grandpa tonight while Brian and I were at mass at 7pm.

But of course we had to put her down to sleep tonight (she did fine even when Brian laid her in her cosleeper — she cried for a minute then rolled over and went to sleep) but she woke up 20 mins later (we were listening extra carefully) and 2 seconds later Brian bounded up the stairs to her. But she was already in hysterics. Brian is laying down with her and she seems ok (didn’t take too long to settle down) but now I am a wreck.

Now most parents could probably conclude with some certainty that their kids would be fine if this happened to them. People actually let their babies “cry it out” to sleep train! I couldn’t do that (we use the AP style with great satisfaction); but Josie has already been through so much. And on top of that, well, Josie has a huge risk of developing schizophrenia — in fact its a 1 in 4 chance. Do I want to admit it, accept it? Nope. That scares me the most of anything her syndrome can possibly throw at us. Losing your child mentally? And not being able to do anything — I know there are drugs, but talk to parents of grown kids who have tried every course of action and how some treatments really work for a while and then for whatever reason they stop and they have no idea what to try next — its so horrifically scary.

And I pray so hard and try to trust God, I pray to trust Him more, but when I feel like I am so wholly responsible for her outcome — that the general idea for how psychosis occurs is nature and nurture. That even with the wrong genes, its possible to avoid the outcome — but it says avoid stressors in early childhood. Ok well, I can not even begin to explain the multiple trauma Josie has already been through. At southwoodstock she was panicked and paranoid, shying from everyone, when they put a paper arm bracelet on her wrist. After I pulled it off 10 mins later she was back to herself, giving hugs to people she barely knows.

I know she’s been effected. She had very little human touch her first few weeks of life. She’s had multiple surgeries and even her doctor appointments are frequent and involve a room-full of white coated doctors to march in lay her on her back, hold her head still, hold down her arms and legs while she screams, and talk about her — not to her and talk and discuss her as a patient. And then repeat this about 6 more times within THAT ONE day within a few hours bc different specialty department students want to come in and see the same things and discuss how it applies to dentistry rather than the last team of plastics or the team before of maxiofacial surgeons. Now repeat. Repeat, repeat and repeat.

So like I said, we try so hard to minimize her anxiety and maximize her trust in a loving, caring world — and then to screw up this huge. I know it was accidental but nonetheless I feel like a huge failure. And it is beyond frustrating, to sit and wait to see what will happen. Please pray for our Josie always. Thanks.

Josie Update: skills 18 mo — March

Quick update on skills and such:

Josie’s coming along, making progress. Gross motor she stands without assistance for a few seconds but she’s really afraid to do much on her own. I am not sure where her balance is, but I know she’s showing some. And muscle is great. She’s got well defined muscles in her little legs and she stands up on her toes to reach things.

Her hair is long enough to do several different styles (ok so thats not a “skill” but it sure is fun). Pig tails are our favorite look (she gets the most attention when we go out when she has the pigtails….so I know she’s cute he he he).

She has maybe 50 baby signs? Note: we need to learn a few to teach her, popsicle, outdoor swings, different signs for different Grandmas lol. She is a sponge. Watching American Idol the other night and she was falling asleep in her swing and all of a sudden she started to sway with her hands over her head mimicking the audience. SO CUTE and really hilarious. I laughed so hard. And she claps with her hands above her head like the audience too. Smart cookie. Newish signs she has down perfectly are car, cracker, pair, apple, carrot, rain, share, sun, milk, dad ……. um too hard to remember anything……. and she knows a lot of body parts which is cool, and follows simple commands brilliantly (even if I sign something without saying it she can still follow and do what I ask her).

As for speech specifically (separate from language) she says Elmo pretty close to perfectly which is awesome bc she has the “o” shape down and can use it with purpose. She added “grandma” to her limited vocab (more like “ahma” really fast and sorta with a gah, but not sure its there yet). She has bah down and babbles a lot but other than that she’s still really limited — no dadas yet. Sorry Brian. We are supposed to be teaching her words with W and H and S and T apparently. So there are a lot of weeeees and whoaaaa and woooow going on here She sorta can say “more” too but that also sounds a lot like mama. And she “vrooms” her toy cars from Grandma Wilmot and roars when she reads Simba and “ee-ee-ee” when she sees a picture of a monkey. Coming along!

Feeding: she can take 7 1/2 oz, soon to be 8oz — but we don’t want to go up too quick. Retching is minimal, maybe once a day and totally bc of gas and complications of her dang fundo. She definitely is lateralization with her tongue and getting a lot more coordinated. Liquids she still can’t manage but in fairness we are supposed to be thickening all liquids bc they splash up into her nose and she gets raspy nasally sounds but it doesn’t seem to phase her. Trying to get her interested in a sippy (Nuk) but have been since forever. She likes a squeezy bottle with bendy straw that has a special valve you put in the straw to keep the liquid from going back down without suction. So the hope is one day she will get sucking. For now we are squeezing the bottle (she is biting the straw) and she really thinks its funny when she flicks the straw and the liquid comes out and splashes her. So of course she does that on purpose… a lot. Purees are coming along. She’s letting us spoon feed her and hand feed her cheerios. TRUST! Finally! She also had her first popsicle and she LOVES LOVES LOVES popsicle. But then who doesn’t?

She’s been very cuddly lately which is nice. Love that. She still loves her books. She is in to EVERYTHING. Mess maker. We try to applaud her when she puts stuff “in” (away) instead of taking “out” and it works sometimes. She emptied out a whole basket of laundry but put it back in after I coaxed her.

Her favorite shows are anything with Elmo, Sid the Science Kid, and American Idol. We try to limit TV of course, but this stage in the pregnancy and I need a minute to breathe a few times a day and besides tube feeding would be near impossible without sitting still and having a distraction.

She is still in love with anything baby and cute — ALL GIRL. Pretty sure her favorite color will be pink. Puppies, horses and baby animals she just adores. We go look at the cows and calves and horses around town a lot.

Music lover. Make that musical prodigy. She loves music and beats.

We tried on Fuzzibunz today for the first time (we got some at the Oneweekboutique) and she proceeded to poop in it. Snaps are great. We also got a ton of baby clothes for both girls and some maternity clothes for me and a new swing for Mary and a bunch of puzzles and toys for Jo. Good stuff. Then a week later we got to raid Childrens’ Home Society’s toy room and actually had to make 2 trips out to the car. We got a giant rocking fish (that needs to go on the porch, its huge) and wooden cradle and new baby doll in the box and a bunch of drawing type stuff, etcha sketch and markers and a no mess fingerpaint pad (whatever its called, no idea), some dump trucks, board books, two grocery bags of baby food purees, a pull along toy, and I snagged some Dr Sears books. All free. Yey. Thank God there are so many resources out there for special needs kids. Its amazing and so helpful.

In fact, two weeks ago I was almost in tears thinking how frustrating it was to never be able to buy Jo any new stuff and I get asked 10x a week at therapies if we have certain toys, or told that we need to have certain toys for her development and when Brian hasn’t had much if any work the past few months and we’ve been living off of Jo’s disability mainly, well guess what. We eat ramen noodles a lot. So I have been trying to offer up my day to God for help to get through and its really lovely actually. Whenever I get frustrated it paints a whole new picture of what we are here for, what counts, what matters, what doesn’t and that everything is temporary and completely in God’s good Hands. So The next week almost exactly a week after feeling so cruddy about our situation we are told to go down and raid the donations room. Woo hoo! Toys out the wah…hoo… lol…plus, we may be competing in the Florida Commerce Fit Challenge and grand prize is 10 grand. That’d be a step in the right direction!!!!

She’s getting good at coloring and loves it. Nice quiet activity… ok maybe its mom that loves it lol.

Still no shape sorting and pretty much all her skills are around 12 months or a little before, but still, we are progressing perfectly. Just slowly. But tortoise speed is a noble thing right? Slow and steady. Steady is the key!

Still a handful at mass but oh well. So was I. And look how nicely I turned out jk

I’m sure there’s more but this is already a long post. I can’t wait til she walks but that may be a couple months. But waiting with baited breath nonetheless. And Mary is on her way……………. eek!

Mango Triumphs

Guess who ate 1/3 of a serving of pureed mango (Gerber)??? Yep, Josie did! We’re on our way to oral feeding, but it looks like that g tube will not be going anywhere for a while — not until her nissen fundoplication loosens up enough to let her burp and control gas.  We need the g tube to vent her belly so her eye balls don’t pop out. Seriously bc sometimes (way too often, 4-5 times a week) its just that awful. It could be years (probably will) or else we can have her undergo an even more complicated surgery (than to do it in the first place) with a whole slew of possible nasty complications. No more surgery! Ugh. So thank goodness for the upside — Josie tasted and enjoyed mango tonight!

SAHM a chore??

This is why I have the best job going, despite its challenges.

Doing the laundry. Chore? You would think so. Used to be. Well yesterday I piqued Jo’s interest as I opened the laundry doors. Spying the washer and dryer she crawled over to investigate what Mama was up to. Realizing I could quickly detain her from mischief by hurriedly stuffing the wet load of dish towels, washcloths, and bibs into the dryer, shutting the door and redirecting her — I instead made an unexpected choice.

“Josie! Come help Mama!” And together, when on my own I could have open and closed the laundry room doors finished with the task in about 10 maybe 20 seconds, we sat on the floor together; Jo sat in my lap, and I reached in and grabbed a wet bib or washcloth from the washer, handed it to Jo and coaxed her into stuffing it into the dryer. It took a good couple minutes for her to “get” the hang of this game was and she was painfully awkward in her attempts: she would always aim too low, just below the dryer opening, and then have to struggle to reposition herself, figure out her balance, lift her arm, coordinate the drop — all good therapy practice I know. But after about 20 minutes of sitting there with Josie, us giggling at the silly washcloths that didn’t quite make it into the dryer when she let go, I wouldn’t have really considered laundry a chore. That’s why being a mom is amazing. And that is why I am so thankful to be able to spend my day with my Jo.