GI Appmnt

I knew it was going to be bad, and so I feared the worst. After all, the last time I said "No big deal" we ended up needing three months of speech therapy at the hospital followed by surgery. I knew she had lost about 2 pounds due to her bad cold and her sudden and immediate distaste for pediasure. Added bonus: yesterday at daycare she puked twice and had 2 bouts of diarrhea. She weighed in at 20 lbs 11 ozs. Technically up 3 ozs from the last time we saw the GI but still nothing to be happy about. He prescribed Duocal to put into her meal. Evidently it's a tasteless powder that you sprinkle in to food to add calories. It's like 42 calories a spoonful or something. Unfortunately he said that if she doesn't gain the weight she needs to (3 lbs to be on the curve, 6 to be "Average"), he will do an upper endoscopy to biopsy some stuff and make sure everything's normal. I really don't want that to happen. Must. Fatten. Baby!

CHoA- speech pathology, dental, surgery

I was pretty calm about going in to CHoA today to see speech pathology and dental. Her teeth are clean and we have speech therapy lined up so what could they possibly have to tell me that I wouldn't already know? BIG MISTAKE. Speech said they want to do private, individual lessons with Ellie at the clinic, not with Babies Can't Wait because they'll be virtually useless. Then Dr. Riski said he wanted an Xray because something wasn't adding up; she should be talking by now. Of course the Xray was a nightmare, Ellie didn't want to get strapped down and held in place by some guy. At any rate, it seems her palate isn't "long enough" to allow for speech so I guess we're getting that "pharyngeal flap" surgery everyone in the PRS groups had been talking about. So we had to add in a visit from Dr. Williams to the visit. We go to dental, her teeth are clean and going well for now. Dr. Thomas, her dentist, suggested that with the PF surgery she may need her jaw distracted. So Dr. Thomas mentioned that I bring up jaw distraction when we discuss the PF surgery. We get her weighed and measured, she's 2 ft 10 inches long and 20 lbs 8 ozs. So she's gained a bit of weight, but we still need to pile it on in the next two weeks before GI. Dr. Williams, her surgeon, was 2 hours late for a 15 min consult. Everyone was super nice, they brought her juice and crackers. She was tired and cranky, as was I, but she seemed to be handling it better. At any rate, he agreed to the PF surgery, but not the jaw distraction. He said the jaw distraction would be after the PF surgery if she needs it, and only if she NEEDS it because it interferes with her ability to breathe at night.

Two Years Old - 2!

Ellie's second birthday party was pleasant enough. We went to my sister's house for a pool party so I planned a shark themed party. We had a shark table cloth, a blue cake with a shark on it, Ellie and I wore shark tank tops. She got some really nice gifts including a mini-magnadoodle, a webkinz puppy (her second favorite toy), lots of bubbles and a bubble gun, and some fridge phonics. Her first favorite toy is the learn to sing robot mommy remembered she loved at daycare. Today was her two year check up. She got a Hep A vaccine. She is meeting or has met most of the milestones- running, walking, mimicry, imaginative play, etc. She is in the 10th% for height and 3% for weight at 20 lbs even. The pedi said he was happy with both those numbers (I was not) but his concern is her lack of head growth. He said he was going to call the craniofacial team since our appmnt is in 2 weeks and see if she needs an MRI or CT Scan. This scares the crap out of her daddy. I'm less worried because her head is oddly shaped due to the recessed jaw and no one is ever able to get an accurate size reading on it. Further, small heads are somewhat common w/PRS babies. Here is where my heart hurts. He is upset that Babies Can't Wait didn't do more for her speech therapy. In his opinion Ellie can't waste August without speech therapy. She needs it immediately. He's sending us to the Marcus Autism Center for it. I know she's not autistic and I know she needs speech therapy but it just sucks. The pedi said she doesn't use her upper lip and with no feeling in her palate and a recessed jaw, she just doesn't have any idea how to make her mouth work to form words. Kind of like getting around on crutches. You have to find new, creative and inventive ways to do the same things as everyone else.

Toddler Bed, swimming

I'm super proud of my lil girl. We transitioned her to a big girl bed Friday. She had been trying to climb in and out for days, and had been coming awfully close to being successful. The first night wasn't too bad. She stayed in the bed all night, woke up in the morning, trashed her room and fell asleep on the floor. Last night she fell asleep behind the door. Currently she is napping in the bed. Yesterday we went to the twins' birthday party. It was a pool party and Ellie was swimming like a champ. Everyone, literally almost every single person, at the party was asking how old she was, and how it was that she could swim. She was swimming like the 4-5 year olds. Just her arm floaties and a strong will to swim. She was jumping in, even trying to go under water! She would turn over on her back or on to her stomach. She's a natural!

Bittersweet Achievements

Normally we are a "finger food" family. We often leave snacks on the table so Ellie can eat any time the urge strikes her- goldfish, cheerios, puree pouches, etc. She has been flying through the pouches though so the other day I sat her down and fed her an actual toddler meal (Gerber, ravioli and mixed veggies). I even gave her a fork and spoon. She downed the food and used the spoon and fork correctly! I'm such a proud mama. Now I don't know if daycare has been teaching her utensil use, or if she could have done it sooner if I hadn't been so focused on just getting her to eat all the time but all the same, she did it. My big girl! We've also switched her to big girl cups. She doesn't seem to care too much for them, though. The services coordinator called, because Ellie is turning 2 soon (*sniff, sniff*). She's still not talking, so next Tuesday we're going to discuss a speech therapy regimen. During the talk Susan mentioned how she remembered how tiny Ellie was when I had just brought her home and said how it just seemed like yesterday. It reminded me of when I was at the pediatrician w/Ellie at one of her first appointments, and the kid in the next room was 2 or 3. The pedi said, "before you know it, that will be you." And he was right. At the time, of course, I was like "impossible. I'll never get through all this PRS crap." But then you lose the apnea monitor, or feeding tube, and have the cleft surgery (and ear tubes) and complete physical therapy, and it suddenly seems to calm down a bit.

Swimmies

Ellie can swim! It's unreal! The lady she stays with has been teaching her and the younger boy how to swim. Ellie can swing her arms and kick her legs. She has all the mechanics down. A few people have said she will be in the Olympics in no time! So very, very proud of my special lil girl!

GI appmnt

Well, we didn't get "cut" from seeing the GI but that's not to say it was a bad appointment. Ellie weighed in at about 20 lbs and 8 ozs, 32 inches tall. This put her right up against the growth curve, but not on it. Her height was perfect and he noticed she was getting a belly, which he loved to see on her. Still, he asked us to stay on the Periactin 3xs a day, and still push all the pediasure and food we could get into her. That said, he was confident in 3 months she would be on the growth curve. At that point he would step back and have a follow up to make sure that if/when he did cut her loose, the pediatrician wouldn't freak about not having GI support and we could show that Ellie can grow w/o his support. He said he couldn't have asked for more from her and was very, very happy with her.