2 years later...

I think we went MIA for 2 years because she started school two years ago. I will try to keep it short to bring you up to speed with our girl. The first year of pre-k we drove her into school and walked her to class. Her teacher was fantastic. She got speech therapy and occupational therapy while there. We didn't have a problem with our IEPs (maybe warning them ahead of time I was a lawyer made them more flexible, although it could also be that I don't have any delusions or misgivings about my daughter's delays. We donated large quantities of not only supplies but also some of her old toys that help with learning. She really blossomed. We got an above ground pool. She loved it. Her second year of pre-k we let her take the bus because she was so sad she didn't take it the first year. She absolutely LOVES riding the bus. She had the same teacher as well as speech therapist and occupational therapist. Again, she really seemed blossom. She learned to ride her trikey. She loves the slides and swings. Still needs the outside every single day. She had 2 babysitters for after-school care (one we had to fire because we left her in charge of the dogs while we went on vacation and she didn't bother to let them out so they did their business all over Ellie's room, the other she would run to at this very moment). She cracked her back molar somehow, we don't know how or when but she's got a silver crown on it now. The dentist said it would be better to make it a crown because it would leave a bigger hole for the adult tooth to come in through. This past fall we noticed that she was becoming increasing violent. She would slap us in the face, kick, hit, pinch, throw things. It was dangerous, especially when she would throw things at the driver of the car while it was in motion. She was also in a new school with a new teacher, new schedule, etc. Her teacher thought the new people and places may have played a part in it. But I noticed other things that began to worry me - the fear of anything touching her head, her aversion to some things, her absolute no fear attitude regardless of how high she had climbed, how fast she was going, how sharp/heavy/electrical something was. Her incessant need to chew on things. Her never-ending energy. Her inattentiveness. Her ability to sometimes recall things that she clearly knows, but other times not be able to access the information. A million other little things that tells a mom there's something not right. I began researching about SPD, ADHD, etc. Oh yeah, she fit all the symptoms. In fact, when I took her to the pediatrician he said that ADHD is diagnosed by 2 separate tests - one for inattentiveness, one for hyperactivity. The levels are from 1-9. Anyone who gets 6 or above has that particular part of ADHD. Ellie scored 9 on BOTH. We ended up seeing a child psychologist, who sent us to have her evaluated by another child psychologist. She confirmed ADHD and added Oppositional/Defiant disorder. We go back to review the findings with the first child psychologist, who will then fax the findings to her pediatrician who will we see and discuss the findings with as well as treatment. She's on her third sitter, who seems incredibly sweet. One of the reasons we chose her is because during all the interviews she was the only one who Ellie actually walked up to and crawled in her lap. At any rate, we're doing the best we can. We have a trampoline and a bean bag chair as well as a sensory chew necklace, all of which seems to be helping. Swimming is also considered a form of therapy for ADHD (worked for Michael Phelps) so we're all eager to get the pool up and running. She's been playing soccer at Exceptional Kids Athletics and is so great at it! She's also participated in the Gwinnett County Special Olympics. She came in first for soccer and volleyball, and third in basketball. She actually finished occupational therapy because her goals were met, but of course now it seems like new ones will be taking their place. She will return to the same school and teachers next year. Her classes are mixed, spec ed for academic classes and regular ed for other classes (PE, art, recess, lunch). She can be incredibly sweet sometimes. She helps cooking, shopping, cleaning, with the dogs. She knows when she is being bad and she'll even yell at herself to stop (the child psychologist said this was actually pretty common). She's obsessed with stairs. But all in all, we fully expect her to get caught up and begin becoming more typical in the future.

Big picture update

A few weeks ago the speech fellow said Ellie's spontaneous utterances were on par for kids her age. I was shocked as I thought she was still significantly delayed. We went to the zoo a few days later and sure enough, she was talking with another 3 year old. They were on par with each other, and I asked the mother how old the little girl was. I was just astonished. I explained to the mother why I was asking (my daughter may be delayed) so she didn't think I was some weird psycho stalker. Ellie's speech really has come a long way. Most her sentences are 3-4 words (well, if she says more words, sounds, and letters start to drop off). She can mostly always express herself, although there isn't a lot to the word of a 4 year old - cookie, dogs' names, pee and poop, baby dolls and various other toys. We are working on potty training. It's very hit or miss and she hates it. She loves to play and hide seek. If you ask her, she can tell you her name and her age. We're still working on the answer to "how are you?" She can follow most directions (the attitude is still present). She has definitely matured, however, as we have fewer and fewer tantrums over nothing. She rides the school bus this year. We sign her up on Friday. There's just so much more I can't even list it all here.

Big Girl and FAQ STATS

She had her ENT check up. Weighed in at 25.2... her height was just under 38 inches. Her talking is amazing. She's using 3-4 word sentences, with great understanding. June she started Crawling July first unassisted steps August sitting and straw September - cruising

It's been a while

I have waited to post simply because I wasn't sure what was new to post. She's been maturing and progressing. Her teacher on Monday said that he felt she had really come a long way since the beginning of school. He's right. In retrospect she's made leaps and bounds by miles and miles. Tuesday there was a pediatric walker for one of the students in the classroom and it was an exact replica of the one Ellie used to use. Ellie grabbed it and remembered how to use it. Her teacher said he couldn't believe there was ever a time she couldn't walk. A stagger observation since it seemed to take her forever to walk! She's really using more 2-3 sentences, asking where people are, what are they doing, what something is... I'm really quite proud of the progress. Of course she also has days where she makes it blatantly obvious she's special needs. Like the other day when she ran around screeching, flapping her hands, ran up to some kid and felt up his thigh, generally invaded everyone's personal space... special needs. Those days ding at my heart a little. She has an ENT appointment in March but I don't expect too much from it. Her last dental check up was pretty much par for the course: looks good, keep brushing and flossing. They said they would worry about braces, pulling teeth, and x-rays when she's closer to 8 years old. So we have time. I think her next eye appointment is this summer. I need to schedule her IEP/teacher conference but we had 2 weeks of snow that shut down school (non-consecutive) so I completely forgot about it. It's definitely not on the top of my to-do list.

Merry Christmas!

Unfortunately, this Christmas broke with tradition. Instead of heading down to Ft. Lauderdale to enjoy fun in the sun, Bryan got the flu and I had to pick up Ellie from school for being sick. So both have been miserable since Friday. I guess I have as well, taking care of sick people is not my thing, that's why I'm not a nurse. We were going to leave Saturday, then maybe Sunday or Monday... but no. So there are no presents and few decorations since the cancellation was so last minute. Luckily Ellie has no idea what Christmas is so she's not complaining.

Sentences and September

Last week she started speaking in 2-3 word sentences and expanding her vocabulary. Her teacher also noticed it and today at the speech therapist we were told how great her speech is coming along. So far she has said, mama sit; no, ellie eat; sid, where are you (Sid is our foster pup)? She's also managed to say off/on when she wants the lights or tv off or on. She's also currently obsessed with "Wheels on the Bus." I'm starting to really hate that song.

Goodbye GI!

Our GI doctor was probably one of the few doctors I felt like actually heard and understood me, and I really understood him. We were always in sync. That said, the looming threat of feeding tubes and having another specialist in my daughter's life just isn't cool. Today, however, we got to say goodbye. With the new diagnosis of CdLS, Ellie gets a different growth chart and on this growth chart, she's in the 95th percentile. He also said that unless she stops growing, or gets sick, we don't need to see him anymore. We can also stop feeding her the periactin because it's not serving a purpose other than making her tired. I guess this is the one upside of a new diagnosis.