Hi all,
I cannot believe our Elsa is 4. Years 1, 2 and 3 were so full of medical issues and doctors visits and life coordination. Ever since she turned 3, it seems we’ve fallen into a rhythm of sorts. Don’t get me wrong, we have our tough times. And we still somehow have 2 doctor’s appointments most weeks and therapy 4-5 days a week (OT, PT, Speech, Feeding, and currently, a swim class). But things have — knock on wood — really leveled out. As a parent, I classify myself as a type with blinders on, to some degree. I don’t think too often about what Elsa should be doing. Elsa is Elsa. She is our angel, and she is doing her own thing. I wish she could tell me she loved me, verbally, but she tells me she loves me all day long, in a million other ways. I wish she was walking, but I am content for now that we’re making strides in this department. Pardon the pun. Here are a few updates on our life, at the moment:
Doctors, doctors, doctors:
I’m pleased to share that we are now seeing some docs only once a year or as needed (GI, neurology) and that we no longer have a cardiologist because the whole in her heart is officially closed. We do spend a LOT of time with our audiologist and ENT. She is not at all reliable in the booth for behavioral testing, so it’s hard to know 100 percent where we are without an ABR. She wears aids for a mild hearing loss. Elsa also is constantly getting wax build up in her ear. We’re on our third set of ear tubes and often go in for ear checks and wax clearing, particularly this time of year.
We do have surgery on the horizon — later this week, actually. Elsa is having eye surgery. The diagnosis: intermittent extropia and inferior oblique overreaction. The procedure: Lateral rectus recession and inferior oblique recession. Both of her eyes really drift out and away. I have taken many pics of her eyes for our ophthalmologist’s review over the past year, and even when I think they are working totally together, they are not. This has the result of her seeing double. Yikes. As if she doesn’t have enough trouble with motor planning. Add seeing double to the mix. We’re hopeful that this surgery could help in several areas — walking, scanning, reaching. We shall see. Prayers for a good surgery on Thursday are certainly welcomed!
Size/weight:
This one always makes me happy… Elsa is in the 15th percentile for her age — on the WHO chart!! I never, ever, ever thought this would be. I credit this to the fact that 1) Elsa is on Prevacid and it works really well for her, 2) Peptament Jr. 1.5 is a great food for her, too, 3) she has really learned to manage her reflux and can often stop herself from spitting up now, and 4) we switched back to night feeds about 6 months ago, and it’s taken the pressure off of getting so much volume in every day. (Elsa gets 9 oz of Peptamen Jr. 1.5 during the day, and 9 oz over 8 hours at night, via a pump. I was initially so hesitant about doing this, but it enables us to do therapies/motions more “full-out” during the day, without fear of reflux.)
Hot wheels:
Elsa just got a new wheelchair, and it’s pretty awesome. It positions her beautifully. The custom foam back was molded to her back, for maximum support, and the laterals are really nice, too. It’s perfect for her school bus ride. She transitions from our driveway, to the bus ramp, to the bus tie-downs quite smoothly. We’re still getting the hang of it. Most importantly she loves the ride! We are now outside of our state’s Early Intervention program, so we obtained the wheelchair through Easter Seals. It was a seamless and smooth process, which only took 4 months from consultation to wheelchair delivery. Very impressed with their local mobility clinic.
Walking and talking:
I alluded to it before, but Elsa isn’t walking or talking yet. But I’m a believer that both of these will come along, as her motor planning improves. (She has said more words, in the past — up, more, mom, grandpa.) We pray for Elsa’s walking and talking every night. The walking is especially big for momma, whose back is getting so sore from lifting our big girl! She doesn’t help much, when I carry her, making it extra hard.
Talking would be wonderful. And I know she wants to do it. She is pleading with her brain to let her let the words out. I can see the struggle as she grapples for words. It’s most apparent when we are one-on-one (which seldom happens, with my other two girls — ages 2.5 and 1 — running around). Tonight, she vocalized mmm’s and ah-thuh’s. Come to think of it… is she saying “mother”? This is truly occurring to me for the first time. I need to be a better listener and give her credit for all that she is communicating.
As I wrap up this very long post: Elsa remains now as she has always been — the most mild-tempered, sweet, loving, gentle person I’ve ever met. Although recently she has adopted a grimace and a very clear “NO” headshake. Ah, 4-year-olds :o)
4th birthday at school
New wheelchair
Elsa and her sisters
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Hi Anitra,
Thank you for sharing this wonderful update on Elsa. You are such an admirable mommy! I cannot wait to someday meet both of you.
Prayers for Elsa’s upcoming surgery. I hope that it helps her vision and then everything else falls into place with the development goals you have for her. You have a great balance of keeping the blinders but not giving up hope. I am really learning from all the more experienced mommies in this WHS family.
Also, congrats on the new set of wheels. I love that it’s tailored to Elsa and is working well into your life. Let’s definitely plan to get together in April or May.
Best Wishes,
Keely and Paige
Thank you for your update on Elsa. I enjoyed reading it so much. I can’t remember from your previous posts if Elsa eats any food orally, or if she gets all her nutrition from her G-Tube feelings. I’d be interested to know. I would also like to see a photo of Elsa in her wheel chair. Does it ’tilt in space’. Does she spend much of her day in it, or is it just a means of long distance transportation?
I can relate to your backache complaints. I didn’t find Rochelle to be too heavy to carry until she was much older than Elsa is, but you are also caring for Elsa’s younger sisters who still need to be carried and held. I can understand why your back aches. I hope you take care not to over do it now, or your back could be toast by the time you are my age. Mine is.
You seem to be very busy with Elsa, and it is apparent she is well cared for and loved. How do you do you manage to meet all of her needs and and the needs of her baby sisters? A 1 year old and 2.5 year old are still babies. I honestly know I could never have done it, so I marvel when I read about you and other parents who do. I am sure Elsa’s sisters are the best motivation and challenge she could possibly have to grow and develop to her full potential. You must be exhausted or have a great deal of help. I hope it is the latter. I’d be interested to know how you juggle Elsa’s special needs with the normal demands of your other children.
Needless to say, you are doing a wonderful job. Elsa is a delightful little girl. It is a pleasure to read your posts and to get a glimpse into her fascinating life. Thanks for finding the time to write. Now I must do it too!
Keely, thank you so much for the note! Yes, I sure hope illnesses subside and we get our gals together soon. We actually had to reschedule Elsa’s eye surgery a few weeks ago, due to a fever that came out of nowhere. We’re trying again! This week, hopefully we’ll get it done. I’ll be in touch about a meet up once the weather breaks — it will happen eventually, right?? :o)
Shirley — hi there! Elsa is G-tube fed, exclusively. In fact, she really dislikes eating. We do feeding therapy about 2 times a month, but if I were honest with myself, it’s mostly to let her know we aren’t giving up! Whether she likes it or not! :o) We don’t push her that hard, but we want her to know that eating is something her family does and that we’d like to include her in the experience.
I’ll make a point to post a pic of Elsa in her wheelchair soon. It doesn’t tilt. She uses it at home, for transport and in her school day. It really positions her better than any other device or piece of equipment we have. At home and at school, she also uses a stander, and at home she uses a gait trainer, too.
When lifting all three of these kiddos (and you’re right, this action consumes my day!), I have to remember to use my legs. I also keep Elsa as close to my body as possible when lifting her, rather than holding her out away from me. It helps keep her weight on my body and puts less strain on my back.
As for the balancing act, jeez. I’m not sure. Her sisters love her so so much, and they enjoy being a part of her therapies and activities. My husband is a huge help – he just jumps right in after a long day of work, our craziest time of day! My sister lives in town and helps me get my middle child from preschool twice a week. My sister and my girl friends in town also take my middle (2.5 year old) for playdates when Elsa has appointments. (I’m so indebted to these friends, I have no idea how to make it up to them, except to bring them Starbucks!) My mom also comes in town when we have procedures on the books, to help watch the littles. So yes, I have help!! I also have three amazing baby sitters, who know and love Elsa very well. That earns my husband and I sporadic date nights and enables me to work from home 8-10 hours a week.
Looking forward to reading your next post!!
Anak saya berumur 11 tahun , dia whs juga. Berapa harga untuk standing nya
[Translated from Indonesian]
My son is 11 years old, he has WHS also. What is the price for the standing frame?