Marvelous Monday

This week is post-op follow up! I am excited for a marvelous Monday… and Tuesday (where we will be back in dance) and Wednesday (where we’ll be back in Rock-a-Baby), and Thursday (which is our appointment) and Friday (when we’ll get a chance to sit and relax and go to a big family event!). It’s been a roller coaster of a summer and now that we’re on the mend, I wanted to celebrate a little bit! We’re so thankful to have some celebration, after all!

#aisforadelaide Marvelous Monday #farmersmarket #weekend #endofsummer

BIG strides happened last week! and I wanted to recap it all as we embark upon another week, sure to show more improvement!
ONE: Addie was off ALL pain medications starting mid-week, and aside from some of the expected soreness and some itchiness, she is doing great!
TWO: We also got pushed out of speech therapy! Addie has been in it because of her ear tubes (we only had sessions once every 6-8 weeks), and we finally had our follow up to tube surgery with our therapist and she and I both agreed that we were done. Addie has wonderful speech, is using inclusive words (“Come with me, mommy. Daddy you come, too.”), is understanding the difference between different but similar emotions, and all-around just doesn’t need speech anymore. We discussed how when Addie’s tubes fall out she may have periods where she will stop doing things (she stopped singing when her ears filled with fluid these past few months), but that it will come back and the sooner we take care of it, the better.
THREE: We also talked about how we would transition her out of Early Intervention. A LOT to think about, but it gave us a great end to the last week- and a wonderful start to our marvelous Monday!!!

I am excited that we’ve come such a long way from where we were 2 weeks ago… and that we were able to enjoy our weekend together- with matching nails, almost finishing Millie’s room, sibling class and going to the farmers market. It was a full weekend, but certainly a wonderful way to start the close out of our summer.

#aisforadelaide #jamberry #julep #nailart Marvelous Monday

Addie went to her sibling class on Saturday, and while it was more for fun, I loved watching her carry around a giant, heavy baby doll, learn to change a diaper and read a book with Dave about becoming a big sister (one she’d read before from the library!). It was a lot of fun.

#aisforadelaide Marvelous Monday #siblingclass

With Addie enjoying a gumbo full of okra on Saturday night, we’re onto cooking leeks and purple potatoes this week… we will surely miss the market when it closes, but will take every advantage of trying all the local fresh fruits and veggies until then!

#aisforadelaide #famersmarket Marvelous Monday #veggies

With an amazing week ahead of us, we’re wishing you a Marvelous Monday and week, Reader!

lots of love,

9 Comments

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9 Responses to Marvelous Monday

  1. JenB

    I have been following your blog for months and I’m so glad things are going well for all of you!

    Can I ask, if it is not too personal, about Early Intervention? Our second daughter is 13 months, and she has achondroplasia. She’s been to Nemours twice, but as you know they don’t find PT necessary (and she’s doing fine – crawling, though not sitting up; great fine motor skills, trying solids, chatty, etc., had all the age-apporpriate tests at Nemours, etc.). Both her daycare and her Pediatric Geneticist here in our local system on Long Island, NY have asked about PT and EI, and I’ve filled them in on Nemour’s thoughts on PT, but I’m not sure what EI would entail, if anything. I don’t want her to miss out if I should be doing something differently/extra for her, but I’m not even sure what to ask about.

    If that is too personal a question, please accept my apologies, and thank you for your time! Best wishes to you all. :)

    • JenB

      Alternately, if there is a FAQ or a site somewhere that you can direct me to if that is easier for you (I know you’re busy!), that would be helpful too! We have joined LPA, have read as much as possible, but there are still so many questions!

    • Questions are always welcome!! PT post surgery is what we’re focusing on now. We began with speech when the docs realized she was hearing close to nothing (what she was hearing sounded like she was under water) for close to 10 months. And regular PT that we do is aquatic… which is really great for ALL kids. We meet with a PT specialist to watch what she does and chart her development, but I do not participate in typical PT. Being in EI has been helpful because they will help us transition in to school and work to get her a 504, but no therapist has ever worked with her hands-on. That is all me. The one thing PT has been a godsend for is getting us “equipment”. Addie has a Tomato Chair with the pads that EI helped us put through our insurance (which covered it!) and they directed us to the Shriner’s Program which helped us get the Learning Tower, as well.

      We agree with Nemours, that our babies will do what they do when they do it! Bober and Mac are such a wonderful team!
      martinkadelux recently posted…Marvelous MondayMy Profile

      • And please, feel free to ask any and all questions! If I can answer, or have a thought or direction, I will share! We’re all in this together!
        martinkadelux recently posted…Marvelous MondayMy Profile

      • JenB

        Thank you very much! I had not heard of the Tomato Chairs and pads, and I can see they’d be very helpful! Also, duh, I’d seen the Learning Towers in “cooking with kids” articles, but had not considered they’d be such a big help for LP kids too. Thank you for the tips!

        We go back to Nemours in the winter, and I will ask further about EI, and ask about consulting with a PT specialist along the same lines, and try to find out who to inquire with out here, and what to tell them re: Nemours’ stance on PT.

        I know there’s not much I need to do (besides the basics for achon babies – hard-backed seats, no unsupported sitting, no bouncies, and so on) but keep up with appointments, but if there IS something I should be doing for her, I want to make sure I do it. Thanks again for your help and for sharing all that you have. My daughter is awesome (both girls are!), but sometimes I feel so lost and overwhelmed. Thanks again, I really appreciate it. :)

        Oh! Random, but one last question: I have some baby items that she has outgrown that we bought specifically because they were good for LP babies who need back support, etc. I don’t want to throw them away, and I can certainly donate them, but is there some sort of network for gently used baby items that might be needed by new parents of children with dwarfism? I would love to help, and save new parents some money, too.

        Anyway, I ramble. Thanks again!

  2. Yes! If you go on the POLP pages on Facebook, I know there are always people who would love products for their LP kiddos! (If you’re not on them, I can help you with that, too- feel free to email me through the Contact page). It’s very kind of you to do that- so many times parents are overwhelmed and looking for what’s best- having some things that you can offer is a huge help.

    Check and see if your EI has a pool… that has been wonderful for Addie and myself for so many reasons (achon or not)!

    And when do you go back to DE? We go in November!
    martinkadelux recently posted…Marvelous MondayMy Profile

    • JenB

      Thank you for the excellent suggestions! I’ll look into the POLP on FB right away. Since she’s mobile now (and unstoppable! XD) there’s a number of items she’s outgrown that I would love to give to those who could use them. And I’ll look into the EI re: a pool!

      We go in mid-December. We love Dr. B and Angie, and we”ll meet Dr. M for the first time! Best wishes to you all, and safe and fun travels when you go :) Thanks again!

  3. That’s an awesomely huge week! So glad that Addie is off the pain meds. And how awesome she’s doing so wekk in speech! Keep up the good work Addie!
    valmg @ Mom Knows It All recently posted…Tick Tock, Ticks Are Always On The Clock #SerestoMy Profile

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