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!

General stuff, maturity

Hubby said he felt Ellie was talking more, making more new sounds. I didn't hear it, really, but I think he may be on to something. She said "up" once last week outside of therapy. She did up her food/drink uptake and yesterday took a 3+ hour nap so I think we're experiencing a growth spurt. That said, Ellie has really come out of her shell. She's expressing herself more, she is talking more (well, trying) and being more mature with her potty indications and putting herself to bed. I even mentioned it to the speech therapist who agreed. ST said that she even noticed a change in Ellie, and if she can notice in a sterile environment where the ST is pushing Ellie to do things Ellie doesn't want to, ST can only imagine what Ellie must be like at home. On a slight side note, ST also said Ellie was, and I quote verbatim: "Very, very bright." She mentioned it because you teach Ellie something once, and she has it down within a day. Proud mommy moment. Tonight Ellie will be a monkey and I will be her banana as we take her for her first trick-or-treat outing.

Speech, leg, etc

Her limping is way down. After two weeks of having the cast off she's really back to normal for the most part. The sitter said she can't even really tell which leg was broken. At speech yesterday Ellie said "up." The ST and I were super excited and tried to get her to say it over and over. So now its the word of the week, everything is up- up on the chair, do you want up, up on the table, monkey goes up, etc. All the same, exciting to hear her talk.

Lies the GI told me

The last time I saw the GI he told me that he would like to do an upper endoscopy on Ellie while she's under getting her p-flap and tubes. I made sure that it would only be done if she needs it, as in, she doesn't gain wait to put her in or above 5th percentile. He agreed. Then last Saturday a girl from his office calls to tell me she's scheduled my daughter's appointment for Feb 4th. I was like, first, no. Second, her other surgeries are in December. So I guess he doesn't even care if she makes it to the 5th percentile, he's going in. Although since I took her to the doctor for her sinus infection last week and she barely weighed over 20 lbs I'm not surprised.

Cast, talking, ENT, surgery

The next day we did go to the ortho that was recommended and got a purple cast put on. It came off this morning. She was walking on the cast but once it came off, it was weak and stiff and so she was super unhappy. Speech therapy is going well but this past Tuesday she was too tired to sign or talk. She has been progressing well, though. The therapist said the first session Ellie did nothing. The second session Ellie signed on her own 4 times, the session after that she signed 11 times on her own. The session after that was when she was too tired to sign. She was able to blow some bubbles and at one point the therapist and I swore she actually said "please." At her ENT appointment they pulled out the tube from her left ear, said there was some fluid behind it but that it barely made a difference in her hearing. This led them to schedule their appointment with the surgical appointment (which hadn't been made yet). So surgery then called me and scheduled her pharyngeal plasty for 12/12/12. Fun date, ha. However, I'm not sure if we're going to keep it or not. I'm not sure I want to "ruin" the holidays with Ellie recovering from surgery. Of course, with all the other things going on- my dad potentially coming back from CA for a visit, my SIL giving birth to a little girl, me re-entering the work force, vacation times of in-laws and ourselves... it may not be an option to celebrate the holidays in Miami like we usually do.