We haven’t been here in months | Physical therapy and finding a sippy cup
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- เผยแพร่เมื่อ 22 มิ.ย. 2023
- Hi I’m Marci. Mom of 4 kids. The youngest is Freya. She has a rare syndrome called Cornelia deLange Syndrome. Come along on this wild life as we figure out disability parenting a child with medical complexities and a limb difference. All while having fun and enjoying life.
In this video we finally go back to pediatric physical therapy after a couple months off. Then we go o. The hunt for the perfect sippy cup for Freya.
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Physio is just a means to an end. If it helps coordinate her movements and build up some strength, she'll be doing a hobby she loves before you know it. So don't feel sad. It'll just take Freya a little longer than her siblings ❤
Thank you for that
I know I’m 3 weeks late to watching this but deary me, I love how everyone is a Dr, a PT, a Specialist, knows exactly what goes on in their house. It’s actually worrying. I also have seen that clearly the comments on this video clearly made this mum feel so bad about herself that she went and made a second video addressing everyone’s comments.
Not bad about myself. Just frustrated that people didn’t seem to understand. I try very hard to explain all the time I spend in my life to help all my children. It did not feel good to be so misunderstood. Especially after all the time I put into my children.
I agree with lots of people, I think Freya will walk when she is good and ready!😂 My son had a similar attitude with his milestones. He just could not be rushed. The day he decided walking was worth it was when his sister stole a toy and he wanted it back! Freya has made such strides this year and I think its because she clearly has her whole family behind her and she has that bubble of safety and security to just live her best life.
Jesse was the same😂 only when it was useful
I can understand your sadness at Freya having to do physical therapy instead of gymnastics but look at the positives, physical therapy will give her the strength to do other things (and this little girl has the will to do anything she pleases) She will also pick up on your vibes and they will determine her willingness to participate. If an activity is made fun or has a reward at the end, Freya is much more likely to take part and I just love how Jessica encourages Freya, she is such a sweet child. God bless.
Freya has parents and doctors. I don't think You Tube commenters are needed for decisions about her care lol. Different situation, but we had an issue where PT was needed for our young son. My friend's daughter had the same issue. We chose to be taught by the therapist and to do all therapy at home by us, while my friend chose PT 3 times a week. We got far better and faster results. Being in an office many times a month just isn't the best option all the time so we have to make the best call as parents with the options we have for our individual child.
Nothing holds Freya back, I’m sure she’ll walk one day.Jessie is awesome sister .xx❤
Jessie is such a good big sister. 😊
Reading people’s comments telling you how to parent your child 🙄 you are doing great Marci and so is Freya! We only see a fraction of your everyday life and I think people forget that. Freya has progressed so much! It might be taking a little longer but she won’t need PT forever. I truly think she will but even if she doesn’t walk, maybe her hobbies would be things like painting, pottery, piano or something like that! The possibilies are endless for a strong willed smart girl like her.
Slow is smooth & smooth is fast ☺
Thank you so much! I needed this comment.
@@Freyasluckyarm 🫶
I'm so convinced that freya will end up walking it will be a great day if it happens all your kids are great fun and everybody please subscribe and like the videos have a great week to your whole family thanks for the video marci.
Thank you. I think she will too. Give her a couple more years. But if it doesn’t happen that is okay too.
I think you definitely have to be optimistic but keep a level head and that is what you seem to have.
Looks like Jessie has a future as a PT! Every time I watch Freya...she definitely has a mind of her own and when she's ready, she'll do it! ❤❤❤❤❤❤😊😊😊😊😊😊
Each child is so different!!! I have 4 kids. And each one passed milestones at different times. Freya has passed her own milestones in just the few months you have had this channel.
You look really good in the color of your shirt. It’s a cute shirt!!!!
Thank you so much. It is so true. She has been doing so many amazing things lately.
I think Freya will walk on some days it looks like she's going to get up and go
First I have to say in college I would have rocked Freya's outfit, space buns, shorts, and knee-high socks..Too Cute!
Second everything you said about physical therapy resonated with me, it didn't help I'm watching after getting home from my daughter's p.t. While our girls are different ages it doesn't matter because the effects are the same. P.T is Annie's only "thing" and she can't participate in sports or activities because of her back. While we focus on what she can do the list of can'ts is getting more noticeable. She's going into high school and all her friends made the cheer squad. She went to watch them try out and because her scoliosis isn't noticeable especially when she's sitting the coach asked her to try out. Annie just wanted to watch and instead she spent 20mins explaining all the reasons she can't cheer, I'm sure the coach ment well but I got the text to pick her up early. So she'll be sticking to p.t. for the summer and despite how great the therapist is it's just not that fun. Needless to say I get it. Now can Freya go horseback riding? Horse therapy is awesome and I think Freya would enjoy the rhythm of the movement and all the clip clop of hoofs. Thanks for the video Marci we always enjoy watching and have a great weekend.
I’m so glad you get it. While sad that you get it. It is t really an enjoyable activity but so necessary.
Just found your channel and as soon as I saw Freya's little face, instant subscribe!
I grew up wearing AFOs from (what we now call) the (disability) Dark Ages. I started with the Forest Gump metal ones, and grew up with the boring, semi-clear ones with handmade padding and shoes that never went over them properly. I did EVERYTHING to get rid of them as I got older.... left them on busses, in classrooms that weren't mine, tossed them in the trash.... they were painful and did more harm than good (from the 80's, at least) and I grew out of each set so quickly and needed so many adjustments. I couldn't articulate what was wrong, and thought they were punishment. Granted, I was in what we now call the "try it and see if it works" phase for us kids with CP. Lots of us had surgeries we didn't need just to have people write papers on our progress... and we had no idea back then.
Doctors told my mom if I ever got a wheelchair, I'd be lazy and their surgeries and hard work would be wasted. I finally got my own wheelchair and neither my mother or Doctors had a say, and it was by far the biggest and best decision I ever made. I joined wheelchair basketball, soccer, hockey, tennis, rugby, archery.... I was rarely home anymore. I had friends that I could hang out with who didnt have to come to ME... I could meet them on my own terms, carry my own drinks, take the city bus, do volunteer work, without crutches and AFOs in the way. I walked less like Bambi's first ice run, and moved more like a bobsledder.
You are 100% your kiddos first and biggest cheerleader/protector.... and our motto "Nothing about us, without us" is what carries us - quite literally - forward in life ... at least, that is, those of us old enough to know what the capital crawl was.
I kinda had the opposite experience, however... with siblings. I was the oldest, by many, many years. I didn't walk independently until I was about 8yo, and when I became a mom I wasn't sure what to expect... till my kiddo was walking independently. She used my manual wheelchair as a walker when she was 9 months old. Now she's all grown and lives out in the world... and I'm here with my comfy empty nest. They grow SO FAST!
I'd say try ALL THE OPTIONS... and see what works for Freya. Doctors made SO MANY decisions FOR my mom, and never asked ME what worked. The ones with the degrees have the educational experience, but Freya will tell you point blank what works for her, and there's absolutely NOTHING wrong with offering challenging situations just to see her learn new things, but still pique her interest. And, like my wheelchair, our equipment isnt always a negative, or "undoing" progress, if it makes us more able to navigate the world.
Lots of us talked about how boring PT was... because it came from (mostly) adults who didn't have kiddos themselves and thought (from a Master's/PhD perspective) CLINICALLY, rather than CREATIVELY. Find something (edible playdoh - obvi if safe to do so - or fingerpaints) that lures her interest, but still provides a challenge for her brain... when she forgets she's "working" is when PT becomes the cool place to go. But I'm rambling.... and all the same, can't wait to see where Freya goes from here, the whole world at those fingertips!
Edits: typos! 🙄🤣
Thank you so much for subscribing. Freya feels much the same way about her AFOs so she wears them for PT and basically no where else. I love the point of view of give her all the options. That is what we try to do. Freya is in charge 100 percent and will show us her way of doing things.
I know that I've said it a million times but I'll say it again.... Freya is SO STINKING CUTE!!!! As well as the other three kiddo's ! Your kids are so smart and helpful. You do an amazing job raising them! Sending you all love from Ohio ❤️
I really appreciate it. 😉
Freya you are adorable so beautiful and clever. Freya you know what you want and you make sure of that. Just a little beautiful Princess 👸 ❤❤❤
Jesse is so good with Freya. Sippy cups are great. She is showing her therapist she can do it.
Jesse loves helping Freya
I love how she fixes her hair , they have some beautiful kids
Thank you.
I think it is so nice how Jessie loves helping Freya at physical therapy! I think Freya is doing a great job! I’m glad you found a sippy cup that Freya loves! Well done, Marci! Sending you all my love and hugs, God bless you all 🤗🙏🏼❤️🥰
She is making steady strides, and with time, her physiotherapy will allow her to walk and take up an interest she enjoys. Freya got super excited when she first saw the new zippy cup. Jesse was so encouraging to Freya at physical therapy, and it was clear Freya loved her involvement.
She is just the sweetest little girl. Your hairstyles for her are great. She has a Will of her own. God bless. Thanks for sharing with us. Love you, and hope to see you tomorrow. Love from, me 💗💋🙋🏼❤️💕
Thank you so much
Freya you are so amazing. You are doing so great.
Thank uou
I could tell that Freya just was not into PT today, and that's okay. I understand your feelings about that. I wonder if when she gets a little bit older if she and you would enjoy horseback riding? I noticed that little Jessie is such a BIG helper! I wore glasses just like Liam, mine used to break sometimes too, it happens when you are a kiddo. I want him to know that he looks very handsome in his glasses. ❤I am subscribed, I always like your videos and I leave a comment as well. It helps our channels out. P.S. I am so proud of Freya,, she is using that sippy cup like the champ that she is!
Freya is so cute n her sister wants to help. Awesome.
Yes yes Jesse is going to be a great mother one day. She is so sweet and caring for Freya . And Freya is such a blessing to the family. And well millions agree. 🤗😘🙏🏻😇
She is a blessing to us. Thank you for saying that.
Remember Freya has to build her strength and think how lucky you are. Freya will gradually improve and she is ALIVE. I have a teacher friend whose 3 year old died of cancer. Think of physical therapy as Freya’s sport!😊
Wow. Great job with the cup Freya🎉 She’s precious and so are your other kids.
Your hair looks amazing! Hi Freya.
Adorable kiddos..Yay for Freya-sippy cup!😃🥰
So glad to see her using that instead of the bottle! Great job Freya!👍
Freya is so smart! She will do great!
Her legs need to weight bare so that her body will lay down calcium on her bones and they will be strong enough to hold her and not break. So, she may not like it but it is important for her progress and growth. This is why your leg bones are thicker than the bones in your arms or other body parts. Love Freya’s progress.❤😊
She does a lot of weight bearing at home in her natural environment
They know that or she wouldn't be in therapy
Wow...Freya handles the new sippycup very well. She can reduce the flow by herself. Today it seems to work perfect. Well done little cuty.
I love Jessy soo much...she is a cuty and helps her sissy very well. I hsve seennit very often. They seem to have a very good relationship. That is nice to see. Thanks for the video..I love to watch you all. ❤
They have a great relationship.
My great granddaughter has spina bifida. She has those also. They put knee immobilizer on her too .she's is paralyzed but can stand with help of her walker .
She has a little wheelchair made for her and she can flat move in that .. good job Freya
Great job, beautiful little girl!! ❤Big Sis is such a good helper, too! I love the Princess Leia hair today. The high ponytail is my favorite Freya hairstyle. I love your content but look forward in seeing Freya's hairstyle for the day. :)
Thank you 🤗I love playing with her hair
Yay Freya. You’re a good mom with good kids and dad so Freya is a lucky girl.
Thank you so much. We are all lucky to have each other
She is adorable
I sometimes feel that Physical therapy is good for the kids and not good for the parents. Also mine always played up when I was watching. It’s lovely to see Freya is taking well to the skippy cup.
I think it was lovely for both girls that Jessie was there and encouraging Freya ❤ my leg braces were never that pretty!
I do love all the options they have now for braces. So cute.
Yes I agree with someone commenting that Jessie is lovely with Freya, well done Jessie.
I thought Freya did a good job of trying out her new sippy cup. Maybe this brand is the one for her. If not bottles will be fine too for her.
Have a wonderful safe week ahead with your family!
Always keeping you & your family in my prayers!
I think so too! She is not choking at all which is promising
Jesse just a sweat ❤
What about horseback riding? My daughter Leia did it for about 2 1/2 years until they closed their doors. She has CdLS and is not 18 years old. We are in NC.
I would love to find a program close by. I will have to look in neighboring towns
@Freyasluckyarm sorry about the spelling, not should be now 18....
I think she will end up walking! She needs a little more time! Greetings from Germany ❤❤❤
I think so too! Maybe a couple more years
Try the Dr Brown sippy cup, it has a flow regulator in it
I LOVE YOU PRINCESS FREYA💝💖👏
If she is in her afo and gets in the gaietrainer for just 30 minutes aday she will be walking in no time! She has the strength to pull up...she just needs to learn the balance and she wiil be running in the front yard with her sibling by summers end!
Love her princess lay a hair do...
I think her sister is a distraction to her therapy...maybe have her sister do something else and and let Freya get the most out of it...Just a thought...
Rock on Freya you got this.❤
Just a question. Do you not do PT at home daily? It helps a lot. Do they not give you at home exercises?
Too bad she can’t do some sort of water PT in a pool! I remember when my youngest went to PT and it was so hard to watch because it’s really hard and equally hard watching your children in pain. ❤
You need to do what is best for freya❤
Have you considered pool therapy? She may enjoy it more and the water would relax her muscles. It’s just a suggestion.
We don’t have a therapist that does pool therapy. We live in a small town and have limited resources here
You need to do more physical therapy with her
🙏♥️🙏
Do you have a therapeutic riding center anywhere near you that would be something attainable regularly? Another option would be swimming lessons, ideally for those with disabilities, but there might be an option for a parent toddler class. Both those things would offer what PT does but are more typical.
No riding center. There is a mommy and me class at the pool I have looked at a couple of times
@@Freyasluckyarm That kinda sucks. Knowing what I know from watching, Freya may need a special saddle or at the very least 2 side walkers for balance, which would be available at a center specific to therapeutic riding. Although, if there was one close by or in the same state it might be a mini vacation option to try and see if she likes it and as an experience.
I know there are places up north about 4 hrs.
It looks like Freya tried to make the ck sound with her sister ♥️
Τι αγαπημένα αδερφάκια; μπραβο❤❤❤❤❤❤❤❤❤❤❤❤❤❤
That is jesse
💗💗💗
Will Freya ever be verbal? She is usually such a happy child.
Her speech therapist thinks she will but with her syndrome it is very common that they are non verbal
I love you n ur family. I think you, Marcy are doing a great job with everyone. I think Freya is really doing great, I saw her sit up by herself n wow I was excited. She is good on treadmill another wow. I just wish I could hold her n kiss those chubby cheeks. Keep it up n I'll keep watching , thank you for letting me into your home, .
Thank you. She is doing so many new things lately.
Or all those sound that she makes sounds like she’s in pain because when I’m nauseous and sick I always make that pain sound I’m just wondering if she in pain anytime
I’m sure she is in pain sometimes but she usually cries when she is in pain. That sound is definitely a sound of dislike but I don’t think it is a sound of pain
@@Freyasluckyarm Well that’s the sound that I make when I’m in pain
@@toniavasseur9574but you’re not Freya! And Freya’s not you!
Was it' cause everything shut down to COVID or other things for them not to go to physical therapy. Even then if can't have it at home set it up in small room so that the mom or dad or a family friend or family member can keep up with her physical therapy
We just had a couple months off because of the PT had a death in the family and we had end of school year things going on. She does a lot of standing and walking at home
Maybe you could find a creative movement for toddlers for her.
The harness looked a little uncomfortable for her. She seemed stuffed into it. Maybe that was a factor…
The harness isn’t great I agree. They don’t make one small enough for my tiny girl but we use what they have
@@Freyasluckyarm exactly!
Can they do it at home in her own surroundings?
We used to do it at home and I honestly think she likes going there better. She loves the equipment they have. You can see even though she didn’t want to walk she loves her time on the treadmill.
One day I am sure she will be able to do a fun event instead of having to do the physical therapy.
Why does she not wear them at home
once in a while to help her more with what there needed for? I think going is important for her overall health.🥰
UnFortunately, the only way she’ll ever do any kind of sport or something she would enjoy it if she did physical therapy to get better.
She does PT did you not watch?