Elsa turned 3 in late December, and I’m a little late in posting due to the arrival of our third child in January. There is much to report, so I’ll get right to it!












School: Elsa started preschool in January. We got a call from the school nurse within her first few minutes of being at school on her first day, due to her spitting up/refluxing in class. This was pretty stressful because I had worried so many days about that very thing happening. However, it turned out to be first day jitters and things have gone very, very well ever since. We are absolutely thrilled with how the bus situation has worked out (it picks her up and brings her home every day), and the school sends home the most amazing daily activity reports. We also just got her first IEP check-in report. It aligns really closely to what we’re seeing at home and in private therapy and was full of some interesting info too about her receptivity to sounds in her environment and her cognitive ability (which is waiting for her physical ability to catch up). This week, she’s started smiling really big when the school bus pulls up. This makes her momma so happy! Since Elsa can’t yet tell me that she likes school, this is such a wonderful reassurance.


Private Therapy: Our insurance is covering most all of the therapies we were getting through the state, which is another tremendous blessing. Almost all of the therapists that I thought we would have to say goodbye to when Elsa aged out of the state program are still with us. We are so thrilled about this because they are such amazing people, who know and love Elsa very much. Therefore, all is mostly the same in this area except that we’ve changed the frequency of these therapies, due to the fact that Elsa is getting OT, PT and Speech regularly at school. Privately, she gets OT and PT once a week and Feeding and Speech twice a month.

Food: Elsa is entirely tube fed still. Early this year, we decided to try to transition her to Peptamen Jr. 1.5, and so far, so good. We opted for this over Pediasure (uh, the vanilla flavored reflux!) and Peptamen Jr. 1.0 because the 1.5 blend is a more concentrated food. This allows us to cut back on volume — a factor in her reflux. We’ve also been told that more concentrated food is “harder to reflux,” which I would agree with, based on early results. Once transitioned entirely to Peptament Jr. 1.5, we’ll have E;sa on a feed schedule of 4.5 ounces 4 times a day (7 a.m., noon, 3:30 p.m. and 6 p.m.). This more dense food requires that Elsa gets a lot more water though, so that she’s not super constipated. All the same, still better! Elsa gets Prevacid every morning for the reflux.

Vocab: This is still pretty limited to approximations for Ball, Baby, Bye, More, Momma, Dad and Up. We also have heard Mmm-hmm and Uh-huh for Yes, Pop and Oval (at school). We know she is understanding more than she’s saying. Our speech therapist is very positive about Elsa’s openness to play vocally and her flexibility in responsiveness, IE: sometimes Elsa will say “More,” while other times she’ll sign it. She’s also very communicative with her gaze and smiles. Choice making is something we work on hard at school and at home. This is another area where we are waiting for her physical ability to catch up with her cognitive awareness. We often see frustration cross her face as she clearly wants to tell us what she wants, and we see her really working hard to produce sounds. I don’t like to see her struggle like this, but it’s exciting to see her desire things and wanting to actively engage in her environment.

Big Sister: Elsa also has an important new role as big sister. (She now has two little sisters.) Her 20-month-old sister (the middle one) is starting to understand that Elsa has limitations, which has been a little sad to see. But I’ve also seen her younger sis try to help in some really exciting ways — by putting toys near her and even in her hands. Pretty stinking cute. I also caught her trying to feed Elsa the other day, holding Elsa’s purple tube end-connection up and putting a full syringe of food up next to it. “I feed Elsa,” she said. I’m awfully excited that little sis has an interest in helping, but also sorry to see her comprehend Elsa’s differences. It puts a mirror up to our reality, which I rarely stop to recognize or pay any mind.


Size and Weight: Aside from a few set backs due to illness this winter, Elsa is growing really well, especially since transitioning off of Pediasure and on to Peptamen. At age 3, she is 25 1/2 pounds and 36 inches tall. This makes her in the 15th percentile for height and 3rd percentile for weight on the World Health Org charts.

Walking: This is her most exciting emerging skill. Elsa wears her AFOs (ankle foot orthotics) to school everyday, to strengthen her ankle joint and give her stability. (She still has the smallest feet! Barely in a size 4. The AFOs slide into a size 7 shoe and give her a much wider base for standing and walking.) Her teachers at preschool work on walking with her from center to circle time, etc. Elsa loves being on her feet, more than almost anything else! We’ve also noticed that Elsa is doing less sensory seeking now that she’s getting more time upright, putting pressure into her joints.

Dentist: I’ve been really nervous to take Elsa to the dentist. She hates things being in her mouth, and I’ve noticed a green/blue tint to her bottom middle teeth, which I’ve feared was decay. Things went well, though, when I took her to a pediatric dentist this week who specializes in treating kids with special needs. He told us that the discoloration is an iron deposit and totally removable. And he said her teeth aren’t shaped strangely (something I asked him about) so much as that they are positioned a bit irregularly and spaced out considerably, giving the appearance of strange shape. I’ve been “brushing” her teeth with a wet washcloth with toothpaste on it for some time, as she hates a toothbrush in her mouth. Her dentist said I really need to get in there with a tooth brush — that a washcloth just wipes things around and doesn’t remove plaque from the enamel. So far Elsa has been receptive to my attempts to work this back into our daily routine.

Seizures: The last big one we had was when Elsa was 2 1/2. She has had “absence” seizures since then (space-out seizures) in the summer and again this the winter. These have been contained with an increase in Depakene. She gets this 3 times a day (2.5 mls each time, for a total of 7.5 mls daily). I sure wish a side effect of this medicine wasn’t hair loss… otherwise, she’s really done well on it.

Heart: I’ll end with the best news: Elsa no longer has a need for a cardiologist! Our amazing doc “broke up” with us last month, as the hole in her heart (ASD) has been closed up for more than a year. We see this 100 percent as answered prayers. We never thought that this could happen — thought for sure we’d be talking open heart surgery by now. What a miracle.

Thanks for taking the time to read this! And please post your updates soon, too.



4 Responses to Elsa Turns 3

  1. Shirley Bidnick says:

    Congradulations on you third child. Three children and three years and time to do such a wonderful job with Elsa. Thank you for the wonderful story, complete with gorgeous photos of Elsa’s progress and her big sister role. I am very impressed with all the things she does at age three. The story you tell about her 20 month old sister reaching out to help her is very sweet. It is interesting that comparing children makes us focus on limitations instead of strengths. I use to think Rochelle was brilliant until a child her age or older would visit. In fact, that still happens. Elsa has a different set of talents that are as valuable as her younger sisters. One day she may be reaching out to then an helping them out.

  2. Barbara Preston says:

    Thank you for sharing Elsa with me. I admire you so much and Elsa has the best mommy and daddy in the world. Her sisters are just as cute.

  3. Auntie J says:

    Love you all so much, and so happy for all of Elsa’s accomplishments—all because she has such great parents! And I’m not even prejudiced! Thanks so much for the update.

  4. letty says:

    Congrats on the arrival of your new baby and the wonderful progress. Best of luck to you all.

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