Transitioning to pre-pre-k

You read that right, it's not a typo. She has to transition out of the Babies Can't Wait program (part A) into Part B. I'm still a little confused, though. I'm not sure I have to make her go into preschool next year. If I do, it has to be in our county so she can continue services while in school. That said, if I go back to work, she will likely end up in daycare/pre-k anyway. The meeting was very simple. I had filled out a packet left by our services coordinator with all the info they provided. Ellie played in a room full of toys while the services coordinator, myself, and the other educational lady talked about her diagnoses. There was very general conversation about her well-being, not much specifics. The lady gave me a packet of info, like how they classify, identify, categorize, etc. the children. They also gave me a progress chart for 0 months through 5 years. It sucked. It made me feel like she was way further behind than I had originally anticipated. After much review and chatting with friends she's not as bad as I thought. Most of her other skills are either on par or ahead for her supposed age group. Only her speech is seriously lagging. At any rate, we'll worry about putting her in a program if I end up getting a job.

Genetics

*Sigh* The geneticist said that Ellie may have "Cornelia Da Lange" and not PRS. Of course, it's nearly impossible to tell because the symptoms are so identical to PRS: Low birth weight (usually under 5 pounds/2.5 kilograms) Delayed growth and small stature Developmental delay Limb differences (missing limbs or portions of limbs) Small head size (microcephaly) Thick eyebrows, which typically meet at midline (synophrys) Long eyelashes Short upturned nose and thin downturned lips Long philtrum Excessive body hair Small hands and feet Small widely spaced teeth Low-set ears Hearing impairments Vision abnormalities (e.g., ptosis, nystagmus, high myopia, hypertropia) Partial joining of the second and third toes Incurved 5th fingers Gastroesophageal reflux Seizures Heart defects Cleft palate Feeding problems Hypoplastic genitalia Children with this syndrome are often found to have long eyelashes, bushy eyebrows and synophrys (joined eyebrows). Body hair can be excessive and affected individuals are often shorter than their immediate family members. Ellie was small at birth, small stature, delayed, small head, unibrow, long eyelashes, eye sight issues, reflux, cleft palate (which led to feeding issues). At any rate, bloodwork will be done. The geneticist will also be checking her thyroid and hormone levels to determine if the small stature is genetic and not something we can overcome. The geneticist also wants us to go see the ophalmalogist sooner than Ellie's birthday and get a bone age test. If the bones age shows the same age or older, it's a problem, likely associated with the CdLs. Ellie will also be getting a skeletal xray. In essence, everyone's just looking for an explanation to everything. I thought PRS was it but may be not. Her eyebrows aren't bushy or arched, but she does seem to have other issues, but again, thought those were attributable to PRS. The only real difference would be that they would need to check Ellie's kidneys if it is CdLs.

more vocab

Yesterday Ellie's daycare teacher says that Ellie pointed to her friend at daycare and said her name. Awesome. This morning Ellie has said buppa, pop-pop, and pretty.

Vocabulary

Today Ellie's daycare teacher came into my office in the back to let me know that Ellie is talking. I guess I'm so used to it that I didn't realize it was news to her. She said that she would tell a child no and Ellie would repeat "No." She said, "We'll be right back," and Ellie said "Back." I've noticed that she also tries to imitate words and the intonation of what I say. The other day I was singing "turn this party out" and I heard "out" from the back seat. Ellie's current vocabulary out up bath no yes help (hep) off on hot hi bye "Ah" means peanut butter Ma is Max I'm mum mum Daddy is da-da I've heard her say Raspberry, banana, and monkey but only once so its infuriating. In the same vein of maturity I took her shoes and socks off and set them on the floor. She immediately picked them up and took them to her room to put them away.

speech therapy

Today was a great speech therapy day. Ellie was perfectly happy and comfortable, talking a bit. Ms. Katie said that Ellie is one of her most imaginative kids, always playing with everything - today it was gloves and a mirror. She said up, hop, help ("hep"), and thank you (the sign). Ms. Katie said that because of Ellie's progress our continued twice a month sessions are perfectly in keeping but if she falls behind, we can always move them up and increase frequency. I'm so glad Ms. Katie got to hear Ellie chatter a bit. At one point Ms. Katie said she was just going to sit back and listen to her while Ellie chatted with me. It was just so sweet and wonderful. I'm very proud.

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.