GI

SUCK ON THAT! Sorry my beginning isn't more professional but I'm just so excited. The GI officially took gtube off the recommendations and cancelled her biopsies. In fact, we're back to seeing the light at the end of the tunnel. Weighing in at 22 lbs 3 ozs when totally nude and just shy of 34 inches tall, she's only a few pounds from the 3-5 percentile! If she continues, she will have 2 more visits and be cut loose. So the key is duocal, heavy whipping cream and peanut butter for us lol. Most 2 year olds gain about 6 ozs a day, Ellie gained closer to 7 (6.6, at least). WOOHOO I SAY! WOOHOO

ENT, Speech Pathology, I love you

Last Sunday Ellie finally said "I love you mama." If I hadn't been so exhausted I would have cried. It made me incredibly happy. We were hiking for 2-3 hours and I had to carry her most of the way. By the end she was so tired she was just snuggling up to me and when we were maybe 20 feet from the car she said it. I said, "I know, baby, I love you, too." Bryan giggled. On Monday Ellie had her follow up ENT evaluation. It was an amazing appointment. First, when they weighed her she came in at 23(!!!!) pounds!!! HOORAY!!! Second, her hearing was tested as just fine. :) Tuesday was her speech pathology appointment. As usual, she wouldn't say a word. We have speech twice a month beginning next Tuesday. Tuesday is Ellie's GI appointment. I'm hoping we can fatten her up and make the GI even happier.

Surgery, Mommy secret language

First, pardon my bad math skills but were in CHoA for more like 28 hours. At any rate, the best surgery recovery time so far. The PA Stacie said they were going to do the sphincter surgery but I said that my understanding was that Dr. Riski had not recommended the sphincter procedure (where they tighten the muscles around the throat to make talking easier) and instead had recommended the p-flap (closing off the vast open air space in the back of her throat). Stacie said she would note it and ask Dr. Williams. Turns out, p-flap was right. So glad I said something. As I mentioned previously, her speech has improved. Bryan says he can't tell any difference, not in pitch or talking. Meanwhile, I hear her say new things all the time. Maybe it's just the typical baby thing where mom has to translate for other people for a while. Or maybe its because I'm hearing what I want to hear. Or maybe I need to translate because I really am the only one who understands her new speech. We leave for FLA tomorrow, and I am hoping Ellie will want to show off for her nanny and buppa like she usually does.

*brief* overview of surgery day

We checked in at 6 a.m., we were in pre-op within an hour and at 7:30 she was rolled back into surgery. There seemed to be some confusion w/the GI who wanted to do upper GI biopsies so instead she just had the ear tubes and the p-flap. CHoA was extremely busy so we were in post-op for a lot long than we should have been but it was fine, we were very well taken care of. A few of the nurses even remembered us (I venture to guess in reality they remembered our cute girl as Bryan and I are usually the type to blend in to the background). Both surgeons said the surgery went well. Dr. Gower, the ENT, said Ellie had fluid build up in both ears which she cleaned out. Dr. Williams, the surgeon, also said everything went well. Ellie was disoriented coming out of anesthesia and spent most of the day forcing me to hold her (it was fine to a point, then my muscles in my legs, back, arms, etc., started to ache and strain and hurt). I even ended up having to sleep in the crib with her throughout the night. I had packed for 3 days and 2 nights, since it took Ellie so long to recover from her palate repair. Nope, at 6:30 a.m., regularly scheduled Ellie time, Ellie woke up and was 100% her old self. She was throwing monkies, looking for trouble, pulling out plugs to all instruments, removing anything taped into or onto her body. She was talking, laughing, yelling. She brought me her shoes and ran around the entire recovery floor. the night before she went to bed she had some apple juice, and this morning she was eating and drinking like a champ. A nurse and I both remarked that if we didn't know better we'd think she just had a cold and nothing more. She wasn't sluggish at all, she hadn't need any pain medicine since 12:45 the day before. She went outside the playgound a bunch of times. Her speech and sounds has already improved, although I may only notice cuz I'm the mommy. At any rate, we were at CHoA for about 20 hours. Exciting stuff! I was convinced she would be recovering for over a week. What a champ my little girl is! Also need to discuss how the surgeon almost performed the wrong surgery!

Pre- Op Eval

We had pre-op today and it wasn't anything like last time, and much worse. First, they told me I wasn't scheduled. I found out that the speech pathologist had an emergency to attend to this afternoon so I had gotten bumped during the rearrangement. So instead of being seen at 10:40 I was seen around noon. So I had to keep a tired two year old under control in a hospital waiting room for almost an hour and a half. We get back there, the doctor says that we absolutely have to see genetics ASAP b/c he doesn't think her speech delay has anything to do with her palate, he thinks its an underlying condition. I ask, do you have a diagnosis in mind? He says, "Yes but since its completely out of my realm I have no business sharing it with you." Helpful. So then he says he's not going to recommend the sphincter (so that leaves us w/ the p-flap). Then he tells me we need to see neurology to determine how best she learns. Fine, whatever. Then he asks me about next fall- where is she going to school, what program is she enrolled in, is the state program supporting us? I'm like NEXT FALL?!?! How about we get through the rest of December first, huh? So then he proceeds to tell me how my daughter is special ed and will need to be coordinated with the state and them and me all working together. Look, I know my kids delayed, but you're not helping. I just wanted to know what kind of surgery to have. Then he goes, well, maybe she stopped talking because no one could understand her anyway. Well, didn't you just say you had an amateur diagnosis of a separate problem? So which is it there Dr. Bigshot? So I've ran the gamut of emotions- sad, depressed, angry, defiant, hopeful, resignation...

Types of Surgeries

Thought I'd throw this conversation in here for other PRS moms who come here looking for answers PRS Mom 1: The two procedures are the pharyngeal flap and sphincter pharyngoplasty. Your cranio team will do a series of tests to determine the extent of VPI and wether or not surgery will be necessary. We had To try a couple of times with testing because Kate would not cooperate. She had it done earlier this year and she was a little older and did much better. PRS mom 2: Yep, Holly is correct, the pharyngeal flap and sphincter pharyngoplasty are the two procedures often done following palate repair if there is still VPI. All cleft palate kids will sound nasal, because to produce oral sounds, you have to be able to close off the area between the nose and mouth, and without a palate that is not possible. Most kids w/ a cleft can say /m/ and /n/ because those are the only nasal sounds in the English language (other than ng), and so everything ends up sounding like those. It is the oral sounds that are usually distorted or they cannot say because the air stream leaks out of the nose instead of the mouth. Now, if they have correct placement for those sounds (articulators are in correct position), there can be a close approximation of oral sounds, but it still won't sound right if it is nasal. A lot of kids compensate and end up with improper placement because there is no palate or incomplete palate, and then many sounds are really off. Rachel "backed" everything, so even after repair had to have speech therapy for correct placement. In case anyone is wondering what "future" surgeries after the cleft palate may occur. Our eval to determine which we will be having is Dec 4.

GI appmnt, the "T" word

Ellie gained one single ounce between GS appointments. Her leg let her gain 3 lbs, but her illness made her lose 2. Now she's down to 20 lbs 12 ozs. No one knows why she won't gain but he again mentioned the "T" word (feeding tube). Worse yet, her next appointment is Jan 22 - AFTER her surgery to work on her throat. I'm thinking she won't really want to swallow too much after that. I almost feel like she's set up for for failure. Anyway, on Dec 12 he's going to biopsy her throat and see if there's inflammation causing problems. If there is, we put her on medicine depending on what the problem is (sugar breakdown, reflux, allergies). I almost hope that's the problem because I don't want her to have a feeding tube!