MASSIVE MEDICAL DECISION FOR BECKHAM... WE ARE DONE
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- Опубліковано 14 жов 2024
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Hey Rachel, you guys are a lovely family. I am sorry for your family's challenges with health issues. My son's nickname was "Bubba" too, and I have no idea why I called him that. I don't recall knowing anybody else who actually uses it except you! I'm so glad things are looking up for Beckham! He sure does understand you really well. I have issues with a neural tube problem that causes me spasticity daily. It isn't something others can see very well, but when it causes cramping and locked muscles, it can be impossible to navigate the world. I recently had a pump installed and am hoping to try Baclofen again soon, as I sometimes have difficulties with oral meds. The surgery was much more painful than everybody indicated but I've got a lot of scarring, so that may account for it. Thank you and Hunter for sharing your family journey so openly with us, both the ups and downs. Your faith is beautiful. Please tell Hunter he's an amazing father, and the kids truly have incredible smiles and such lovely, positive attitudes! God bless you all.
Life has thrown you some huge unseen tossed balls but it amazes me how you face each challenge with hope and positivity. Well done. Keep strong. Keep going you are all wonderful ❤️ 🎉
I was a 24 week preemie
Please be aware of weening off baclofen, my cousin quit cold turkey and had a seizure that almost ended her life. Doctors didn’t figure it out for a year, so please just look all of that up! She is doing so much better not taking it, but so important to ween off. ( I’m sure you know, just want to share just in case! )
My grandson has AFOs, and it was suggested to have longer socks so that the material is not coming in direct contact with his skin. It can prevent any chaffing that may occur. I am so excited to see Beckham progress. My grandson was also born at 27 weeks in 2020. Just at the start of lockdown. They are amazing little boys.
Beckham’s progress never ceases to amaze me and I know he will thrive no matter what because he has the best family by his side at every twist and turn.
My heart absolutely burst at his Billy shoes. I really wish those had been a thing when I was growing up with my AFOs. I grew up having to buy two different shoe sizes since I only had an AFO on one leg and then I had to take the sole out to accommodate for it. I heard about Billy shoes years after I was discharged from all the services/supports I received for CP the moment I turned 19. Which is unfortunate that my family and I haven’t known where to go since then and I can really feel the toll it’s taking on my body and my walking.
Blakely at Trader Joe’s is honestly me too whenever my family and I cross the border into Buffalo from Canada. I just get so amazed by everything that we don’t have at home lol
I am so very happy to hear that their will be no Baclofen or Botox for now at least. Without it Beckham will learn and grow so much better. As far as him getting his braces off at night put the pillow on backwards so the Velcro doesn't stick to the sheet. My mom had to do that with me forever ago when I had the same surgery as Beckham and it works.
Yes ! We took my son Greyson off of baclofen and he is perfectly fine he does have some tightness but he’s able to use his muscles more efficiently! So happy for bubba ❤
My mom takes bacoflen for leg spasms
My mom takes bacoflen for spasms.
OT here! His AFO’s may be more comfy with a little foam piece on top of his foot to protect it from the plastic. Wheee I am, the caster provides them. I saw someone mention above “pringles”, that’s what I’m referring to. They also help keep his foot seated all the way down without pressure points. Always your choice but I also recommend tall socks that go to the knee and you can fold them down just over the top of the AFO’s. That’s an added layer of cushioning for the entirety of the brace. Some of my kiddos (patients) have sensory issues with the plastic and Velcro/foam combo. The AFO world is full of “just figuring it out” because everyone is different. Love the Billy shoes! They’re our fave!
AFO companies usually put an extra sift padding at the top of the AFO by the knee. That usually is enough to stop the scratchy part of the velcro from touching the skin. However I have saved several of them over the years and put several of them on my son's AFO so it doesn't touch his skin.
@@dorothysnyder7014 that is also an issue we see quite often with our sensory kiddos. It’s not always a good thing with a sensory sensitive kiddo. It’s a great thing but sometimes causes more issues than help.
Well Beckham probably gets frustrated with the stander bc he’s thinking “hey why doesn’t this thing move like my chair” 🤣 he’s so stinking smart he’s probably working on a way to escape! He’s so darn cute, that smile could heal the world🥰listen you and Hunter are this child’s parents, and damn great ones. Whatever you decide to do with his care is your business. I happen to think it’s a decision that makes sound sense. Go forward and be happy in the knowledge you have 2 beautiful children that both require rearing and raising, your way🥰
@HOUSEOFHUGHES do you think it would be helpful to for you to learn and teach a couple easy signs of sign language for Beckham? Like drink , more, eat , no , yes...ect. I use it for my Littles to communicate before they can talk. It helps with frustration. Beckham is a brilliant boy and does so well with his arms and hand , I bet he could get a few of them down pat in no time. You and Hunter are amazing parents. Beckham and Blakely are blessed to have you both. ❤❤
Before my grandson could talk would tell us when he was hungry and thirsty with baby signs. Beckham would be able to master it, no problem.
I taught some to my little brother when he was very little. He obviously adapted the signs to his ability’s and how he’s almost 5 and still uses I love you. It’s just an L for right now because he doesn’t quite have the dexterity for the pinky up but it’s definitely helpful.
❤ Beckham has alot to say. He's very observant and looks like he wants to reply to them! Excited to see Beckham's progress - very observant young man.
I was thinking the exact same thing! I bet Beckham would have tons to say!
Wow, Beckham has done amazing can’t believe the progress he’s making you are absolutely the best parents for that boy and I think you did the absolute amazing thing for him. Yes it’s hard but my mom and dad know the same as you guys do I have cerebral palsy just like Beckham And I went through AFOs and all the things. I am now almost 40 years old and I enjoy watching your videos with both your beautiful children in the interactions are getting so much cooler between the two of them, and so much sweeter between the two of them, I love to watch your videos you are a rockstar parents with rockstar kids, keep up the awesome work all of you😎👍❤️😍❤️😍❤️
YOU are amazing! Thank you for believing in him!
I loveeee how independent beckham using his wheel chair. He’s sooooo clever
The bond Beckham and blakley have is amazing. They have the best relationship. The way Beckham and blackley interact is truly the best thing to watch . He has come so far from the NICU to now . Hunter and Rachel you are the best parents. The patience you have with Beckham is truly amazing. I love it. You and hunter are the most amazing parents, Your kids are extremly lucky to have u as there parents and to even have u in there life. Thanks for sharing this amazing journey on youtube. Keep up the good work. You are amazing. You create the best content. You guys are my favourite content creators.I love your videos. Blackley is so sweet. Hunter's teeth look amazing.
You are so full of love and kindness! This comment was so uplifting and means the world to me. I love you!
Becham and Backly are so sweet together..
Great choice to put it on hold. We decided to stop our daughter's baclofen as well. She has CP similar to Beckham, and you're absolutely right it relaxed her whole body when we only wanted to target her legs,ankles, and feet. We stopped it because she developed dysphagia. After stopping the baclofen, the dysphagia also stopped.❤
I take it I'm paralysed so need it . I now have foot drop and my legs are tightening behind my knees I get physio once a fortnight or once a month I brought foot splints online they work But it's so hard to use them
You and Hunter are his parents and no one else should be commenting on how you handle things with either of your children.
When you have comments they have to expect comments good and bad. If they don’t want to deal with those then they need to turn the comments off. Why UA-camrs think they will not get any type of negative feedback baffles me.
They have a public channel.
They make money from putting their kids on line. You cannot expect every response to be positive.
Agreed :) thank you for making this a safe place!
@@nancyfarkas3592I don’t think she expects to not get any I just think she is hoping to explain herself correctly and to maybe not get as much. And it’s sad that the world is like this. To have to expect hate from people is wrong. Even UA-camrs are human and have emotions. They don’t deserve to be told they are aweful parents just because they stop a medication they feel he doesn’t need. It’s freaking weird that people go online to purposely hate watch and leave rude comments. If I don’t like something I don’t watch it it’s that simple. And if I do happen to not agree with something there are ways u can express that without being mean. I’ve had multiple conversations in comment sections with creators about a topic I don’t necessarily agree with. Adult mature conversations where sometimes in the end we just agree to disagree. It’s ok to have different opinions and beliefs but it’s not ok to be mean to ppl for not agreeing with yours. It’s strange
You guys are the best parents. I have no doubt, that you guys are doing great with Beckham’s needs, and the best care that he can possibly get. You guys are so careful to stick with a schedule and make sure that each one of you, specially little Blakely, are treated with all the love and care that she needs, as well as mama and papa. I must say that you are a great team. Sending all the love and the best vibes your way. XOXOXO ❤️❤️❤️❤️
Eastern and western medicine combined just makes sense!!!! Y’all are amazing parents!!!!!
Great combination
My inglisch is verry horrible, but a translate it, i hope you anderstands this. I have a good intantion with this message i Come from the Netherlands and i have also baclofen the dochters say that you becarful with stopping to fast with baclofen its has to be done verry slowly Due to withdrawal symptoms and you are do good for backham and his little sisster❤
Hey, Just watched the video.. Loved it he’s doing so good rolling around and being happy n his wheelchair.. So very proud of him and with his standing too.. Also, love how y’all r so passionate about making medical decisions for him.. My love and support goes out for y’all’s family.. Last but not least, sissy is talking so good 😊.. She’s such a great helped for her Bubba.. So sweet..
Absolutely love this video!!! Completely agree and support the holistic approach as well as only using medication when it’s necessary and beneficial. Love you guys❤️❤️
What a great video( as always). Beckham is doing so well, Thanks to your mom and dad love and support and undying efforts. Of course the surgeons and the doctors and specialist. I have done a fabulous job with him. You are very special parents to be able to handle what you’re handling and do what you do on a regular basis for your children and your selves. Date night is a fabulous thing. I love it.❤❤❤❤❤❤❤❤❤
I had both hips derotatated and a dorsal resontimy at the same time when I was little. I have cerebral palsy and I’m 32 now. They said I would not be here today. I weighed 1lb 9oz.
Rachel being a spinal cord injury since I was 17 I would totally agree with what you’re saying. From what my experience has been just stay on top with the stretching and standing also the pool as much as you can. Just a FYI look out for extra spasms and things like that. I’m sure you know this but ween him off the baclofen slowly. That will give him less of a withdrawal and where you will not see as much of the adverse reactions like the spasms and such. If you have any questions feel free to ask. I hope I did not overstep in my comment. Love you guys.
Beckham is doing amazing...and let me just say that Blakley is just Awesome,what a
Beautiful,Smart little Sister she is .. Beckham is one lucky Brother.. Absolutely Amazing Parents to ..❤
Rachel, You and Hunter are the only ones who know what’s best for Beckham. You know his needs you know him better than anyone else. No one has the right to cover it on how you parent him or the choice you make. You and Hunter are amazing parents.
My nephews have the same AFO's they have had them since they started walking. They've had the dinosaur pairs and the camo pairs They are adorae shoes for sure . I agree with the chat here as it has helped with my nephews use long socks with the AFO's. You guys are doing phenomenal! Love this sweet beautiful family❤
As someone who has CP, I understand being grateful for modern medicine, but still taking a holistic approach when possible.
I prefer to take a holistic approach to my medical care as much as possible because I don't like the side effects that come with certain medications. That being said I take Prozac for anxiety and I get botox every 3 months because I need it.
I completely understand why you and Hunter made the decision you did. 💕
You do the best, normal (hospital, doctor, medication)with holistic or homeopathic From both sides the best for your son.
Everybody has to see that can go together! Yeah for your choice! Love from the Netherlands
I am so, so proud of you and Hunter. Your fantastic parents. You will ALWAYS be the best advocate for Beckham. He is doing so well after surgery, with standing. You can see there is such intelligence in his eyes. Prayers for his last surgery to work so well that it was a one and done scenario. And your daughter is absolutely adorable.
👵💜 on an airplane, you are instructed to put your.mask on first, then put your child's on. You.must be able to take care of your children and as far as.I see you both are doing awesomely. You have a good support system. I am sure.It is frustrating for all when he wants something and can't tell you.
Beckham's smile melts my heart
Thank you for sharing
Beckham has the best parents ever! God bless you all!❤
I love you 🥹💖
@@HOUSEOFHUGHES_ Love you, too!
Hunter and Rachel try long socks when putting Beckhams afos on i used afos and they used to be uncomfortable i found wearing socks then putting my afos on helped with the uncomfort feeling ❤️
Totally agree with the long socks. Both my son and my granddaughter used AFOs and we always used long socks. My ex had my son for 11 days at one point and didn’t use any socks and he still has scars on his ankles at 20 years old from that.
@@rebeccacraig5116 agreed. I always wore knee high socks with my AFOs and then folded the top of the sock over the top of my AFOs to prevent my socks from rolling down. I found it most uncomfortable on hot days when my sweat would stick to the inside of the AFO and taking off would be like ripping off a bandaid.
@@kricketcooper5024 i had big sores because i didn’t wear thick enough socks with my afos and it was so painful i loved taking them off and sometimes didn’t wear them because of the pain the afos gave me
@@ajpreclaro1608 this is exactly what i did folded the socks over the top so they didn’t slip down as the strap would cut into me
Yea they had him in the onesie but I don't think that's thick enough. I would put socks over the onesie and then the AFOs
Glad you are also looking at how Blakley;s diet is only highly processed food. Kids survive but not thrive on this hi sugar diet.
I'm praying for all of you, that God will guide your steps, and your littles ones' steps, too. I love that you guys make his feeds yourself. How incredibly cool. And I also love how independent he is in the wheelchair. It makes my heart happy.
Love your videos ❤ Have you tried using a bliss board with Beckham to communicate? I understand wanting to stop with the baklofen, because it affects the whole body. I am Lucky enough to be able to decide for myself whether i want to take Parkopan or baklofen and it depends on how tight my muscles are that day.
I rememeber last year around this time Beckham was doing a intensive physically therapy, now thats he’s had the surgery, will he be doing the intensive physical therapy? Also I watched your video last week of Beckham in the pool, not the most recent pool video, but the first one, and it got me thinking seeing how flexible his legs are now, have you ever thought about getting a stander with wheels?
We looked into it and have decided with school full time that we want to wait until next summer to do an intensive program!
Parents know best! So happy for Beckham 😊I take baclofen for spasms in my legs and arms and could not live without it, it’s amazing that surgery solves his biggest issues and I’m so happy for all 🥰
I take it to I'm not long paralysed in 2019 due to spinal problems. When I did the spasms were bad my legs would go straight and shake ..for half a hour. You couldn't bend them I. Went to spinal rehab to learn how to do thing while trying the medication and the get the right dose.
But now I get foot drop. And the tendons are tightening behind my knees . I have sprints for my feet but there so hard to ware. As if I need the bathroom quick there to hard to move out of bed . I got them myself. They do pull and stretch them. I get physio twice a week. Or once a fortnight. I try to do what I can at home but it's hard
I grew up with my disabled brother side by side just like your kiddos. Your life is though! Constant death or life decisions that will never stop and constant trying to improve life quality ❤ you and your husband are such wonderful parents there's a reason your son was placed in your hands ❤
You are amazing. So honored you're part of our YT family! Thank you!!
You are amazing parents and you two know what is best for Beckham. Blessings as you continue his journey.
Thank you!!
Rachel and Hunter, I’m saying prayers that he’ll no longer need the Baclifin (sp) and Botox and he won’t need another hip surgery. You guys are doing great with h and with Blakely.
This means the world to us!
❤ Praying for Becham & family every day. He is on my Permanent Prayer List🙏🙏🙏. I'm 75 year old widow with MS, mostly homebound, so I have lots of time to talk with God. Will ask other Prayer Warriors to pray for you too❣
This means the world!
Beckham is just the CUTEST little boy. That smile makes you just want to squeeze him so tight! He's so smart too! I love him ❤
I absolutely love your family, I have been a "house of Hughes "fan since sissy was like 2 I believe, with that being said, it's obvious I've seen many many "health/medical" vlogs, & it's very rare that I see any rude/disrespectful comments, not saying there aren't trolls who are crappy humans, but your viewers are more like "super extended family members... I know from personal experiences with baclofen that after an extensive period of use the purpose of the medicine can loose its effectiveness if that makes sense... and anytime you can switch to a holistic method then yes yes yes......
Is the plug near the side of Beckham’s bed close enough where he could put his fingers in there? I only ask because I didn’t see a safety cover & he managed to get his brace off in the middle of the night so anything can happen! He’s really getting tall! I’m not criticizing your parenting skills…I’m just detail oriented and that’s the first thing I noticed with him laying there with his brace in the floor!!
Hi! I have been watching your channel for a long time and I must say Beckahm is doing amazing! So much progress this year! You are such loving parents and always do what is best for him. Blakely is so smart! Everthing you are saying with the medications is so true. Side effects are a real concern.
I think having a good balance of modern medicine along with holistic therapy is great combination.
Chiropractic care , physical therpay and acupunture/ acupressure work wonders for kids with CP. I just love him crusin in his wheelchair , it is the best ❤ I also have a special needs kiddo and it can be tough, but seeing them reach these milestones that most can take for granted is truly rewarding!
much love to your wonderful family!
Blakelys outfit is so stinkin cute! 💚 just want to add that you guys are incredible parents. The decisions you make for your babies, are obviously for their betterment.
I can't believe his progress!! His surgery has definitely helped already!! He really has come a long way from the NICU and Blakely is so cute. She seems to really understand Beckham. You are wonderful as Emily from it's our wonderful life says at the end of every video.
You don’t need our approval, Rachel. You know your son better than anyone. After his surgery, he is doing so well, so does that mean he doesn’t need Botox shots anymore? Blakey is a great little helper - she has a big heart. God bless and protect your lovely family. ❤️🇨🇦🙏
You're so sweet! Thank you!
To me, this is a courageous decision, especially after everything you've been through. And as someone with multiple chronic illenesses, almost all requiring at least one medication, I know that you must have put a lot of thought into it. And like you say, you can always change your mind if you feel the need. Having had medically neglectful parents as a child, I can see how much you truly love & care for Beckham & Blakely, taking time to think about every single decision. I'm so happy that Beckham & Blakely have such loving, caring parents. I wouldn't want it any other way. Having a medical background myself (I'm a health scientist), you're totally right, this is the best opportunity you have to give this a go, right after Beckham has recovered from his surgery. You never want your child to be on a medication with serious side effects like this unnecesarily. Now will be the time to see whether Beckham actually needs to be on the Baclofen right now. You couldn't have picked a better opportunity.
You have no idea how much this message means to me! Thank you for taking the time to write out your encouragement and validation. I'm so grateful for you!
@@HOUSEOFHUGHES_ I know that people can be not so nice in the comments, so I wanted to make sure than whatever else is said, you know the truth. You're doing an amazing job bringing up Beckham & Blakely, especially with their medical needs. And I have to say, they're both sooo cute!
Good choice. Like you said, you can always go back. Prayers 🙏 🙏 🙏
I had the concern about Baclofen. I have mild spastic CP. My other choice is Botox. I'm terrified of needles. I also would say the surgery is definitely a big help for Beckham and replaced the medicine and Botox. Maybe for a few years or forever. I had surgery done when I was 11 and after that, I never got Botox. Except for now like I said my choice is Botox or Baclofen and also physical therapy. Can't wait to see his progress.
Have you tried parkopan? It is not as strong as baklofen, it is also a muscle relaxant.
Don't know if you can get it where you are. It's swedish.
You and Hunter are doing such an amazing job. Keep up the good work. Beckham is so lucky to have you guys
Thank you so much! 💖
#houseofhughes I am a person that follows your page because I to have spastic quad CP minus classified as ataxic. The other day I was put on baclofen and had a nightmare of a reaction. Including laboured breathing you mentioned that you were going to put Beckham on some holistic options. I would love to hear more about the holistic options. As I'm also interested in trying more holistic options to deal with spasms, pain, etc..
love watching your videos and seeing beckham and blakely interact xx
Thank you so much!!
Rachel…dig into your ECS & how it works & how important it is. Please do all your research but WHAT a game changer it has been to me & how to keep it balanced. 😊😊
Beckham is the best little boy ever he is so determined to beat all odds with cerebral palsy and I’m so proud of him he came so far🙂❤️❤️❤️
Have you ever thought of teaching Beckham basic sign language? That might help him express himself better, he is so smart and i just know he has things to say.
You do an amazing job making sure Blakely gets the attention she needs and including her in Beckhams care! A lot of times kids in families get less attention when a sibling has special needs. Your endless patience and love will allow both your kids to grow up to be the best little humans they can be❤
Hunter and Rachel are the best parents who are taking the very best of those 2 babies
My grandson has the same exact shoes (like 6 pairs) he too wears afo’s ,he was born with 1 club foot & one slight club foot…after several surgeries he’s now 9 and doing pretty good .But those are the best shoes ever and believe me m daughters tried them all…. Right at the moment he’s out of his afo’s .So I guess time will tell what’s up. Your kids are to cute 💕and what wonderful parents they have🫵🏻⭐️⭐️….👋
We also call our grandson ‘Jaxson’ buh buh .Thats too funny 👍
My brother had cp one thing never let them cut the tendons. They did to my brother . But told my it would help this was urs ago he passed 5yrs ago but he had sever cerablepalsy he could ride a special bike and walk if you held him. But the drs said to mum by doing it it would help his legs. But they never told her. It would stop him from what he loved. Back then they didn't know much about cp
I take Baclephen as im paralysed. In 2019 due to spinal cord problem . And drs fault. But im now 40 my tendons are tightening behind my knees. And feet i got foot drop. I get physio once a fortnight or once a month if i can go .due to my sensitive tummy. Its hard. Im from perth Western Australia
I take Baclephen its great im paralysed from 2019 im now 40 . I try to eat but have to be careful. But i now 30klos its hard i have a very sensitive tummy so all the good foods i love can cause a upset
Organic peanut butter without sugar and fat is better!
were done? Never give up on your son. You guys are the best people to fight for him.
I'm new here, I love your family.and I'm so happy seeing Beckham in his wheelchair. I will 🙏 for all of you on this journey. ❤
He is not gonna need it he is gonna surpass everything they thought and then some! U can see the change
God bless you all ❤ Rachel and Hunter - you are Angels an beautiful humans ❤️ Love the connection with blakeley and Beckham it's adorable ❤
OH my LORD, i have prayed for this!! YOU WILL NEVER LOOK BACK, GOING HOLISTIC IS THE BEST FOR EVERY HUMAN AND FOR BECHAM. My heart is overwhelm for you and looking forward to see the progress in future.. STILL PRAYING AND PROCLAIM healing and blessing in the NAME OF JESUS..
You are so sweet Anne!
You are his parents you have the right to make that call. Also many physical therapist are stepping away from suggesting medication because like you said it can take away some of their strength. Great call.
Thank you so much! 💗
Prayers going up for you. You don't know until you try. God bless.
You and Hunter are brave, wonderful parents. You are your child's advocates. He was so lucky to get you two as parents. ❤
Just a genuine question. With his CP is there intellectual delays. What are the options do have for communication with hi, since he does not speak, sign language vs a iPads a communication device.
So sometimes CP is associated with an intellectual disability but sometimes obviously they can have normal or of course above average intelligence.
I don't know about the iPad vs sign language sorry
I also don't know if he has an intellectual disability for sure but I think he does
Sending you guys all the love in my heart. Prayers too! ❤❤❤
Rachael, I have been watching your journey for years. I am continually impressed by your ethics. Your content is so inspiring. Beckham is a miracle. But Blakey is such an incredible little person! You have managed to nurture her individuality and she is so kind and proud of her relationship with her brother. I loved listening to Hunter talk and her parrot back his explanation of things! So adorable. You and Hunter should be so proud of your kids. And yourselves. Thank you for sharing:)
The little guy is such a trooper. He really goes through a lot doesn't he? He is doing so good in his stander. Your little girl is so cute with her shopping cart. Fun fun fun
They are so fun! TY 💗
You and Hunter will do what’s best for your Children like you always do . I am very proud of the parents you’ve become. Your children are very blessed to have you . God Bless your beautiful family.
Thank you Wendy! You're so sweet ❤️
Would this be a good time to send him to the therapy center you have used? He made gains there. You guys keep up the good work. I’ve learned so much! ❤
When I saw the thumbnail I figured this was it. I would imagine he might also gets unwanted side effects from baclofin. Praying he does well.
Ya'll are the parents and are the ones who love Beckham and know everything he's been through. No one else gets to say anything about his care!! God gave Beckham to you!!❤
I think you both have made such an amazing decision on the changes you have made,,, GOD BLESS YOU AND FAMILY!!!!🙏🙏🙏🙏🌺💖🌺
I notice Beckham watches very closely every thing you all do with him. Braces etc. maybe that’s how he is memorizing how to get in and out of his braces. Watch out he’s smarter than you think. Our grandson had special needs and caught on super fast. Go Beckham!
YES! He is such an incredible observer!
Hi family. I'm sure that Beckham will walk!
Me too 🥹 you're amazing!!
I love Beckham. He’s so cute. I’m a subscriber and I watch her videos like 24 seven.
You are such good parents. You’re so strong and I hope you always remember that. ❤
Always in my prayers 🙏❤️
You guys are the perfect parents for Beckham! ❤ Keep up the hard work, keep up the good vibes! Beckham looks like he’s doing great and well taking care of. I do have a question, Does Beckham have a sense of taste when you feed him through the tube?
Thank you so much 🥹💖 He doesn't!
You guys and the doctors know best. I think he’s gonna do great without the Baclofen, can’t wait to see what he can do! I’m so happy this surgery seems to be a success. ❤
I was in the Nicu and I was born at 24 weeks and 15 oz and I’m fully functional but I just have vision problems
You're amazing!
Thanks so much I thankfully did not have brain bleeds or anything, but I did end up suffering from kidney failure. My organs started shutting down, but I came around from that.
I honestly wish you guys all the best💖 , your a beautiful family and beckham is so strong, you and hunter are doing an amazing job with both of your children
I love you and your family. Sending LOVE PRAYERS, and HUGS❤🙏🤗🙏❤
Sending all of our love!
Hi Rachel my name is Carrie I have the same condition as backup and I had the same operation as Beckham and I myself made the decision to have the baclofen pump removed out of my back after the surgery it was one of the best decisions that I could ever make cuz just like you were saying it loosens up everything and even when you're trying to get things to be stronger it's like the baclofen is fighting because no matter how hard you try all your muscles are relaxing even though you're trying to get them to tighten up a little bit just so you can stand I think that's a great decision that you're taking him off of the Baclofen
Thank you for sharing your experience! You're amazing!
I’m an older woman with CP. I tried Baclofen but it didn’t work well for me. Hope you find what works for him!
I also wear AFOs and I just get socks that longer than the AFO to prevent chafing .
I think it is fine to reassess and try new things when raising a child with a disability. Obviously if the withdrawal of medication causes pain and distress, you can put him back on it. Hopefully that won't be what happens and it will help him .
Awwww ❤❤❤ yesterday was my 18TH birthday! Beckham is adorable!!!
Happy birthday I hope you had a good day😊
Thanks x
HAPPY BIRTHDAY BABY!!!
@@HOUSEOFHUGHES_ thanks 😊
Happy belated birthday!!
You are so brave and beautiful mother i wish you very best god will give a health to your little boy
He’s doing really well n try long socks when u put them on him because I had to do the same when I was wearing them
Hi Rachel, I’m Dani, I have spastic cp exactly just like Beckham. I can verbally communicate but not everyone understands what I say so I write it down on my phone.
I teach complex special needs kids.
You know when you said that beckham can’t tell you what he wants.
Have you tried to give him a few pictures of objects. For example, when you feed orally, you could have a picture of “more” and “stop”, and he basically has to give you the picture of his choice, but you verbally say the word as well to try and get him to verbalise the words…. Even if he doesn’t say that word clearly as we do, with time and a lot of patience he might start 😊😊😊😊
If he chooses the stop card, then you could stop feeding him for 5 minutes, after the 5 minutes give him the cards again and encourage to pick, hold his feeds and you point to the “more “ card.
Like I said, this will take time and he might get upset and frustrated but he will learn as he is such a clever little boy 😊😊 I hope I made any sense
Hi Dani! Yes we are working on pictures :) thank you for your incredible insight!
Sending positive vibes and prayers for Beckham. ❤
You are fantastic parents. You do everything for beckham.
You all are in my prayers every night!