Apparently in my world, soon means about 3 months!  This bird has had a lot of change in the last few months. Good and perplexing. The history of photos shows that since the day after her birthday she has taken to two-leggedness! We are thrilled and have our haz-mat gear at the ready to undo what this child can do in a matter of minutes. Need your cupboard unpacked? Done. Need your trashcan full of dirty diapers bathed? Done. Need your basket of snacks set out for the cat? Done. You get the picture. She is mobile and in. to. everything. Lovey had a good explanation recently to one of our friends, Zuzu is rambunctious. The Quail is mischievous. If you don’t believe me, just squat down to her eye level and make a request. It will be met with a glimmer in her eye before she does an about face and runs away, or she’ll simply smack you. Of course if the latter is the case, no worries- she’s the first to notice someone’s tears, from across the house, sign sad and go running to hug them. She’s all about the feelings this girl.

Also she is the proud owner of a full set of pearly chompers now. During the teething process she developed a thumb chewing habit, that has left it’s battlescars. You can hear her moaning along with the rhythmic chewing from anywhere in the house. We try to intercede and offer somewhat tastier options. If we forget to offer an alternative and simply state, “No chew!” She responds with a big grin, the aforementioned twinkle in her eye, and proceeds to stuff her whole hand in her mouth. Nice. But the teeth are hear now, she loves to brush them and we’re hopeful she’ll make it through this phase with all 10 fingers attached, if a little worse for the wear.

Oral motor wise she is sailing along. She had her most recent program plan update in early May with the famed Sara Rosenfeld Johnson; who incidentally moved her practice from across the country to within 4 hours of us! It went swimmingly and the Quail has made amazing progress since last fall. The thing that is missing at this point for speech is volitional airflow. She definitely tries to talk now, and she rounds her lips and she has recently started responding when we ask her to say something on command and her signing vocabulary is awesome. But it is still extremely challenging to get her to repeat a sound consistently the more she thinks about it.

She knows what’s in front of her. The girl does excellent identifying everyday items, foods, colors, different sizes, clothes, body parts, animals and people. And she can tell you what she wants. But she can’t blow- she can’t force air from her body. She now has the strength to talk. She’s chomped her way through the oral motor strengthening exercises. She does well holding her tongue in her mouth. When it’s out it’s because she means it to be, rest assured. She cognitively understands what you want her to do. And she gets furious when it’s hard for her. But she’s determined and we’ve added some new  apraxia tricks to our repertoire including the illustrious Renee Roy Hill; apraxia bilabial shapes to add a kinesthetic approach to sound. During the meeting with Sara we broke out the shape for M sounds and were thrilled when we got an immediate mmmmmmm from the Quail. We had not been able to get her to consistently make this sound with either visual or auditory prompts. Needless to say we bought the full kit and are getting ready to move on through the alphabet. We are also working on our huh and hoo sounds. While Sara’s approach would thrill any physical therapist, Lovey has also had slightly more, um, musical approaches to encouraging her speech including a little Sam Cooke  for the huh and hah sounds and a little Chicken Payback for the ooo-ooo-ooo lip rounding exercises. Sara has a pre-heirarchy we are working through to get to the pre-horn! We’re pre-pre! Fortunately Zuzu thinks it’s all neat and is tickled to model any and all activities asked.

Now for the concerning update. She got sick a lot her first winter as you know (RSV, pneumonia, in daycare so regular colds) and she refluxes a lot- a happy spitter though- no pain cries. We eventually got her on zantac. That didn’t fix it so then prevacid. We found out when she was 15 mos with a swallow study and upper GI that she had a duodenal stenosis and she had surgery to repair it last year at this time. She also went on thickened liquids a month pre-surgery. At that time nectar thick.

She did well for a number of months and then last October we went to get a new swallow study in preparation for a Sara update to see if we could stop the thickened liquids. We were told that whereas in the first swallow study they saw penetration (liquid going near the air tubes but not in), this time they saw aspiration and we needed to move up to honey thick. They explained it that as her anatomy grew it would start a learning curve of using her muscles again and again with each growth spurt and that we couldn’t do any active “swallowing exercises” tills she was developmentally 10-12 years old. The SRJ oral-motor strengthening stuff would help the mouth but not the swallow delay and weak peristalsis that pushes the food down.

So she does well and then a couple of months ago she started refluxing more frequently. Probably about 3-4 times a week she would come home with a change in clothes and school would average about 2-3 Tbsp came up.

So we went back to the Ped GI a couple of weeks ago and they ordered a new Upper Gi, Swallow study (which is next week) and upped her prevacid to 1 melt tab in the am. and 1/2 in the evening.

The Uppper GI brought up a whole new round of concerns. I wanted it to look at the surgical site and make sure that there was no new blockage or problem with the surgical site. That was fine.This time he focused on lower and started to express concern about potential intestinal malrotation. He called the surgeon to ask what they saw when they went in last year and the result was, “her intestinal anatomy is just a little different”. The GI said that if it was intestinal malrotation we would have been sent to surgery like the previous year so not to worry. That since there weren’t any significant complications from it we wouldn’t go back in to surgery. They said there was also a mild gastric emptying delay and they felt that this was responsible for her bad reflux. They said that the food sitting longer in the stomach was causing gastric irritation and thus bad reflux. They said after she has been on the increased Prevacid dose for a couple of weeks we would evaluate to see if we need to add a low dose of erythromyacin to speed up the stomach emptying. They had also said to be certain that she has the prevacid 20-30 minutes prior to eating.

I talked to the nurse again last week and she clarified that it has to be no throwing up in order to be considered successful and not move on to a new treatment. I also found out I’ve also been giving it to her wrong- I’ve been letting her chomp it. The throwing up is better but it still happens and in almost 3 weeks she’s come home with having thrown up 4 times. I’ve also just heard her reflux 5 times. So better- but not gone. Still 2-3 TBS of throw up each time. We’ve also switched to us thickening her liquid at home and sending it in that way so that there is no question of if the liquid was too thin and she just can’t control where it goes. Last week I got some advice that has made the prevacid super easy. Now we put the melttab in a spoon, add a drop of water, wait a second or two then let her eat it off the spoon. It melts and she gets all of it. Since that change last week she’s only thrown up once and refluxed twice. So I’m hopeful we’re on the right track.

I also just don’t know how to be sure we’re getting adequate care. I can’t believe she’s this old and we’re still finding out stuff this basic- that her anatomy just isn’t organized normally!

At the last GI visit 2 weeks ago they said that she now has a slightly enlarged liver and they felt it was due to the pressure differential from her VSD and once that was repaired the liver should return to normal without long-standing side effects. Well her next echo is scheduled for 7/7. I called the ped card to ask if we need to move up that visit. It’s at this one that if she still had a VSD (which she obviously still does) that we were planning to schedule her pre-op visit for next spring and open-heart surgery for the repair. I’m wondering if this is reason to move up that timeline and also if the VSD can be related to the sluggish intestinal track and if any of that will improve when she gets a repair. The GI nurse thought it wasn’t related. I thought I had heard people on here talking about open heart surgery and its effect on reflux- but I need to go back search for those posts.

I tell ya- the Ds, is nothing. I get it. I can work with it. It’s this other anatomy stuff that scares me and makes me feel helpless to know what to do for her. But the main thing is we’re working on it, and we’ll figure it out.

We’re just lucky she’s so dang charming- see for yourself!