Wednesday, December 19, 2012

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.

Friday, December 14, 2012

*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!

Tuesday, December 4, 2012

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...

Monday, November 19, 2012

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.

Thursday, November 8, 2012

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!

Wednesday, October 31, 2012

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.

Wednesday, October 24, 2012

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.

Wednesday, October 17, 2012

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.

Thursday, October 4, 2012

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.

Wednesday, September 12, 2012

Speech Therapy, Buckle Fracture of Tibia

The first time at speech therapy was great. Our homework is to teach her to plug her nose and puff out her cheeks so she can say "puh puh puh peas" for please or "buh buh buh bye." She was doing it within an hour of getting home. Meanwhile, today our private sitter called me to tell me that Ellie had stopped walking or putting pressure on her right leg and it was in my best interest to come get her and take her to the pedi, ASAP. The pedi was closed and I figured they were going to send me for Xrays anyway so I bypassed the middle man and went to a CHoA satellite center (on Satellite Blvd). At first the Xray didn't seem to show anything but then the Dr came back and said there was in fact a tiny of fracture in her knee cap, commonly called a "buckle." So they wrapped her leg in a splint and told me to call their list of ortho's the very next day. So far she just seems to be mad that she can't walk. It was interesting because the sitter said she never saw a fall, and Ellie never cried. We both manipulated her toes, ankles, knees, and hips with no response from Ellie. No wincing, no crying. I knew she had a high pain tolerance but goodness!

Thursday, August 30, 2012

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!

Wednesday, August 15, 2012

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.

Tuesday, July 31, 2012

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.

Sunday, July 15, 2012

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!

Tuesday, July 10, 2012

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.

Saturday, June 23, 2012


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!

Friday, June 15, 2012

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.

Sunday, June 10, 2012


I took Ellie to the pedi yesterday after she got suntan lotion in her eye, and had what looked like an allergic reaction. While we were there she cried out most of it so no biggie. However, the pedi on duty (not our usual pedi) mentioned that if she's not speaking by next month she will be referred to speech therapy. I said not to worry because we already know she needs ST and her next eval will be right after she turns two. Regardless, this led my husband to ask if she's mentally impaired, or has other problems (a/k/a is she dumb). She's not, she just doesn't want to talk. However, I looked up ways to help speech progress and one way is to get a dog. My husband is adamantly against this. I looked at the sheet the original ST gave us, which wasn't helpful. But of course, now I'm worried.

Tuesday, May 22, 2012

Words Ellie "knows" - I use quotes because sometimes she's only said the following words once, albeit clear as a bell. Mama Dada Howie Nite-nite All done Eat Niles (not that clear but we know who she's talking to) Yes No Nay

Sunday, May 20, 2012

Things I don't want to forget

There was a commercial for Hershey's chocolate syrup that sings "Stir it/stir it/stir it up" and when Ellie was a baby, Bryan would take her hands and make her "stir." When she gets tired, she lays down, puts a monkey on her face/head, and sucks her index finger. She has a billion nicknames. Doodles, deedles, sugerplum, turtle dove, Ellie bellie, splish splash (especially in the bath), monkey, crazy, sack of spuds. She LOVES to rough house. She loves when I "fall" on her and "Squish her." She loves being upside down and swinging. I either hold on to her ankles or throw her over my shoulder. She is an animal lover. She loves our dogs, daycare lady's dogs, all the dogs in the pound... Daddy's hand was the "scary ghost" and tickler!

Saturday, April 14, 2012


No discharge from the GI. She weighed "officially" 18 lbs 12 ozs but the doctor and I agree that's more likely 19 lbs. At any rate, still not on the growth curve. He's not changing the amount of medicine, only asked if we'd put heavy whipping cream in her pediasure cups. Other than that we check in again in 2 months.

Wednesday, April 11, 2012

Open, honest feelings

I can't express how awesome it is to see my daughter walking. Even thought I've seen it for 3 weeks now, I still sit in wonder when I see it happen. Its like watching a movie. I can't believe it happens and happens to me.

This pains me to say but I'm glad we're a step closer to generic definitions of "normal." It pains me to say because as the mother of a special child I'm not supposed to look at normal and long for it. I'm supposed to be happy and beyond thrilled at my special little girl and not take notice of how she's different. For the record, I do love my little girl more than words. I am beyond thrilled at exactly who she is. I barely notice when she's different (altho constant appearances at the children's hospital can make that glaringly obvious). But to know she's catching up to her peers, that there's one less specialist in the mix makes my heart dance.

We are PT FREE!

Ellie was officially discharged from physical therapy today!!! HOORAY!!!

Wednesday, April 4, 2012


Well, it's progress I suppose. She's not really "speaking" per se but she's really trying. She's got "mama" down, always has. "Dada" is coming along nicely. She's not really said "ni-ni" (night night) very frequently, that seems to have dropped off some. She is trying to say "Niles," our dog. She desperately tried to communicate by pointing and talking gibberish ("shakalahmseepo!" Uhhh? You want to eat?)but nothing seems to have clicked yet. But! I am expecting real words any day now.

Tuesday, April 3, 2012

ENT, weight gain

Ellie went to the ENT yesterday for a check up. She has a headcold but she managed to do "perfect" on the social hearing test. I was so happy and proud. Her left ear tube is sitting on the ear drum, so it's loose but not out yet. When it falls out, she'll get both tubes replaced. On a great note as well, she weighed in at 19 lbs 8 ozs. She gained 2 pounds in 6 weeks! I'm confident April 13 will be our last GI appointment

Thursday, March 29, 2012

PT walking!

Last Thursday Ellie woke up from her nap at daycare and decided, "Today's a great day to walk." And she never stopped! PT came yesterday and I told her therapist I have never been so happy to give someone bad news- we don't need her anymore! The therapist said she would come back in 2 weeks, just to make sure Ellie is stick with the program, and has learned to stand on her own and then she'll be discharged!!! I'm so excited. I couldn't wait for this day to finally come. 20 months and we have a full-time walker. Now, on to speech!

Friday, March 23, 2012

Just an update

It appears Ellie has grown. Her 12 month clothes look a little snug, and yesterday I put her in an 18 month shirt that seemed to fit. To be fair, it was a hand-me-down so there is the possibility it shrunk. I did a rough measurement while she was playing with her kitchen and she appears to have grown an inch. Also, many people have commented how she seems to have lost her baby fat and gained weight in a more generalized fashion. We also seemed to have turned another corner with walking. Yesterday afternoon and last night she walked EVERYWHERE! No crawling at all! This morning we had a bit of crawling but I'm not too worried. It seems she may like this walking thing after all.

Thursday, March 15, 2012


As of yesterday we have cut back on PT to twice a month. There's no point in the therapist coming every week since Ellie knows how to walk, she just doesn't have the desire to do it all the time. We'll be going to different places (Wal-Mart, for example) so she doesn't feel comfortable crawling around there and is "forced" to walk. We shall see.

Friday, March 2, 2012

Speech Therapy

Hannah the speech therapist came and evaluated Ellie. Although Ellie has a very limited repertoire, consisting of "mama," "yum," and "yeah," she is not considered delayed. Evidently on the bell curve anything below an 85 is delayed and Ellie is an 88 on her receptive skills and an 84 on her expressive skills. So no delay. Further, Hannah said, most kids don't really start picking up words until age 23 months. Since Ellie just started walking she's on track for speech and we should expect (and yet encourage) her speech. Hannah will come back to evaluate Ellie in 6 months, so at about 25 months. If Ellie isn't speaking at that point, we can talk about putting ST in her rotation.

Ellie's Movie

Wednesday, February 22, 2012


It appears we are almost done with PT. I can't believe it. Even when I see Ellie walk with my own two eyes. The therapist said we were on the downhill side of things, and that we may be able to cut back on the frequency of PT soon. She even suggested weaning Ellie off the walker.

Today Ellie walked the entire length of our hallway (15-20 feet) without falling or crashing or stumbling, even. She didn't even charge full speed ahead and lunge into me like she usually does. She climbs and walks and plays and every single time I'm just amazed. She pushes chairs around the new hardwood floor. She walks to the window to look outside and wave. She climbs up the incline of the couch cushion on to the couch. We put a cushion in front of us so she walk to us and then put her hands down on the cushion so she can remain and stand upright(ish)if she so desires.

Tuesday, February 14, 2012

GI appointment

After being postponed several times due to scheduling conflicts, we finally made it to the GI. Our last appointment was in Sept. We were supposed to go back in Dec but he had nothing open until Jan and then in Jan he had to schedule. So here we are.

She still weighs 17 lbs 11 ozs and is 30.5 inches long. The exact same weight and length as her 18 month check up about 2+ weeks ago. I was not thrilled about that but the overall appointment was good. He said she looked healthy, not wasting away and still gaining, albeit more slowly. He is not ready to cut us loose just yet, but we're coming back in 2 months instead of 3 and if she is still gaining at that time, we will probably be cut loose. He said we're not out of the woods yet but we are VERY close!

Thursday, February 2, 2012

A day at CHoA

Yesterday we spent a good portion of the day at Childrens Healthcare of Atlanta - Scottish Rite. We began with the speech therapist. Ellie has at least a 6 month delay in speech. She should start speech therapy any day now. We also have to go back to reinforcing sign language and begin instituting pictures for her to point at to further express herself. He also expressed a concern about her hearing so we go back to the ENT on April 2. He did a test and it seemed like her ear ways are open, the fact that she still grunts makes him concerned that she's still not hearing well. At any rate, the social worker at CHoA called our services coordinator for Babies Can't Wait and we're still waiting to hear back.

After speech she saw dental. The dentist was extremely pleased with her teeth. He said they were coming in symmetrically and they appeared to be very clean. He said just to begin to flossing so we shall. He cleaned the few teeth she had and put a protective fluoride paste on her teeth.

After that Ellie and I had a break so we took the CHoA little red wagon we had down to the cafeteria. We also stopped in at the library to pet the therapy dogs Sams (a black lab) and Lucky (golden retriever). The koi pond was closed for renovations. Ellie played on all the couches and pushed all the buttons and climbed on all the tvs. She generally had a good time.

Then we went to her swallow study. She did very well and I absolutely adored the radiologist. He was Welsh, and spoke Welsh to her. Even mentioned he had a (boy) cousin named Llewellyn. At any rate, Ellie can swallow just fine. The issue is that she doesn't chew her food. So whenever speech and the coordinator gets back to us I have to find out if speech will work on the chewing with her (as they sometimes do), or if we need to get an OT. I'm really hoping speech will do it. The fewer specialists the better.

On a behavioral note, Ellie acted wonderfully. She screamed when they tested her ears, and when they cleaned her teeth but no tears, and no whining in between sessions. She was a perfect dream.

Friday, January 27, 2012

18 month check up

She got her polio and Dtap shots. She answered an assessment of questions looking for what I think is either autism or any form of delay (does she smile when you smile, does she know her name, is she overly sensitive to loud noise, etc). No ear infection even tho she sticks her fingers in her ears all the time. Breathing sounded good. Did seem to have a yeast rash forming on the diaper line, and her sensitive skin requires some 2.5 hydro cortisone cream. He also said to get her a potty seat to sit on while we go potty just so she gets used to the idea.

He asked if she said 15-20 words. She says 1, "mama." Speech therapy eval is Feb 1 and he's very, very interested in it. She communicates through grunting and pointing. She used to use sign language but now she just walks over to what she wants.

She's in the 3rd percentile for weight at 17 lbs 11 ozs and 10th percentile for height at 30.5 inches.

Since she's been choking lately (3 times in one week) on food she eats normally (apples, goldfish crackers) he ordered a swallow study. Great, just what I need, another reason to go to CHoA.

I was really hoping we were getting away from this nonsense but now its Speech Eval Feb 1, GI Feb 14 and swallow study who knows when.

Sunday, January 22, 2012

Walking update

I don't know if its because she used her walker all over the daycare lady's house or because her daddy helped her push a luvs box all over the house but she's been super interested in walking lately. She spontaneously started walking one handed with the "pooh mobile" this afternoon. Between walking with the box and the pooh toy, and the walking at daycare (and today at the mall) I'm starting to get my hopes again!

Thursday, January 19, 2012

*yawn* walking, daycare

Well, its been officially established by the PT and our services coordinator that there is nothing wrong with Ellie physically, she just has no desire to walk. They are continuing services though. She can walk, and she will if she wants to or we force her to do so. Its not like we can bribe her with cash or cars or tv or video games. She just has to want it on her own. Further, because of her small stature, crawling has not been shown to be a hindrance to her. She can move quickly and easily through any situation without pain or problem so walking isn't a necessity at this point. Tomorrow I am bringing her walker to daycare.

Daycare is going great. We found a fantastic woman to do in home daycare with her twin 3 year old girls and her 4 month old son. Ellie was excited yesterday when she realized where we were going and today when I put her down with the toys she was happy as a clam. Daycare is trying to help facilitate the walking with a bathrobe belt under her armpits, or holding her hands as they walk somewhere but overall, still no desire. Ellie will walk until she doesn't, and then sit down.