My Son's Diagnosis Changed Everything - The Shocking Journey I Never Expected

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  • Опубліковано 3 лис 2024

КОМЕНТАРІ • 80

  • @sheriylen2012
    @sheriylen2012 Рік тому +11

    I have Evans Syndrome, it has been my observation that adolescent cases are much more volatile. Although we are grouped together. But the children are so much scarier. While I know that doesn’t bring you comfort, but I would say prayer is so helpful. Do everything you can do, and leave the rest to God, or you will drive yourself crazy!

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому +1

      Great advice! I have learned the hard way I am not in control of everything. Thank you for listening to our story.

    • @priyasamson7900
      @priyasamson7900 Рік тому +2

      Very true we can do as much as we can rest in god's hand as it's Said in proverbs whole the horse is getting ready for the war but the victory comes from our saviour he is a god of miracles he does wonders every day praise to his holy name Jesus name amen

  • @MariaMendoza-iq2xx
    @MariaMendoza-iq2xx Рік тому

    You’re a wonderful mother. Blessing for all of you. 🙏🙏🙏🙏❤️❤️❤️

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому

      Thank you! We appreciate the support and kindness. So far, things are going well and we are navigating this new path.

  • @haydeetorres3602
    @haydeetorres3602 Рік тому +7

    Your son is blessed to have such a caring mother.

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому

      Awe, thank you! I feel blessed to have him. I hope he always feels supported! 😊

  • @lorihannon-theaker7531
    @lorihannon-theaker7531 Рік тому

    Bless you warrior mama! Prayers going out to you and your family. 🙏🏻

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому

      Thank you, we appreciate the kind words! 🙌
      My son is on weekly treatment and doing much better!

  • @ejmm93
    @ejmm93 Рік тому +4

    You are a wonderful mother ..both you and your son are fighters ... May God be with you and your family.

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому +1

      Thank you! We are fighters 😊💪 We will make it through. 😊 Thank you for listening to our story.

  • @pearlberry---PearlyGates
    @pearlberry---PearlyGates Рік тому +4

    Hi Jess my name is Pearl. My heart goes out to you big time. At 3:37 p.m. today My son will be 37 years old. 4 weeks before he turned five I had to take him to the hospital. He didn't have hemophilia but he did have something called ITP... His platelet count was 3000. The normal range is (150K--400K). He is fine today but for 2 years we didn't know what his outcome would be. I am so glad that you have a support system. There is no support groups 32 years ago. I don't know what area of the country you live in, I live in Illinois about 20 mi from St Louis Missouri. You have a long journey ahead of you and life will not be easy but it will be rewarding. I understand the caution that you will feel with your son yet you also need to balance that with trusting your instincts. If you ever need a sounding board I would like to be there for you. I'm glad you have family nearby and if you have a strong community within your church that will be an extra blessing as well. Feel free to ask me any questions whatsoever.

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому +1

      Hi Pearl! Thank you for listening to our story. We live in Nevada in a small town. I'm glad to hear your son is doing well. I hope I can say this 30 years from now. I may reach out in the distant future. Any other advice ?

    • @pearlberry---PearlyGates
      @pearlberry---PearlyGates Рік тому

      @@MentalHealthMonday The one thought I have at the moment is keep a special journal for him so he can read later on and also keep one for your daughter as well. My daughter was 3 years older than my son and I had friends that helped out with her a lot whenever he had hospital stays. It's really hard as a parent of a sick child because It is hard balancing normalcy in life. I wish you the best in all aspects in being a parent and you need to know that you are the best parents for each of your children.

  • @kellybroady6378
    @kellybroady6378 Рік тому +5

    You are such a great mother! I know you'll make the best decision possible for your son's treatment, you are doing the absolute best you can.i know you are questioning a lot right now, but don't ever question that ❤
    I have heard of hemophilia, but never knew much at all about it, thank you for sharing!

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому +1

      Thank you for the kind response. It is much appreciated! I didn't know anything about hemophilia before this, but am learning something new everyday. Hopefully I can bring more awareness and understanding in this world.
      Thank you for listening! 🩷

    • @dimitrakapa4887
      @dimitrakapa4887 Рік тому

      @@MentalHealthMonday this IS from family membres to anothrr ..his grandfather or grandmother had this?? Search your family tree girl....

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому

      @@dimitrakapa4887 1/3 of individuals who get hemophilia have no genetic link. I get testing done in June to see if I have the recessive gene. It is carried on the X chromosome.

  • @sheilabush7066
    @sheilabush7066 Рік тому

    You are a good mom. He is lucky to have you and his dad their to love him. And of course big sissy ❤

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому +1

      Thank you. He has a good support system. I am thankful that our family also is supportive and willing to learn. I hope he can grow up to have a good life.

  • @Kookie07.
    @Kookie07. Рік тому

    Prayers for your family keep fighting ✊💜💜💜 remember you are important and there is always someone there who cares for you.
    YOU MATTER 💜❤💜

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому

      Thank you! Wonderful advice. ❤️

    • @Kookie07.
      @Kookie07. Рік тому

      @@MentalHealthMonday no problem just remember one thing keep fighting it doesn’t matter how many times you fall it matter how many times u stand back up

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому

      @@Kookie07. So true! 🙌

  • @suetaylor4018
    @suetaylor4018 Рік тому

    I CANNOT stop watching!
    You are a STRONG WOMAN,
    and, as a nurse, you have taught ME so much!
    Again, GRATEFUL THANKS! ❤

  • @BlurryPuzzle
    @BlurryPuzzle Рік тому

    Hugs to you beloved parents. Lets even die for our kids. Bcz we are prtectors pf them. Love and hugs each one of you.

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому +1

      Thank you! He is doing good so far and is on weekly treatment.

    • @BlurryPuzzle
      @BlurryPuzzle Рік тому

      @@MentalHealthMonday what a relief to know . Have a good time

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому

      @BlurryPuzzle Thank you for reaching out. 😊
      Right now we are finally comfortable with how things are progressing. Hopefully we can continue to spread awareness and be a positive support. Hope you are doing well.

  • @mileplamenica1200
    @mileplamenica1200 Рік тому

    As someone with Hemophilia B I can say that you boy will be fine, every now and than I will get some bleeding in the joints but with tretments it goes away in a day or 2, just do his treatments regulary and most importantly dont raise him under a glass bell. In my case I take my factor once a week and living my life normally. Its not gonna be easy but it will be fine in the end.

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому

      Thank you! I appreciate you taking the time to leave a comment and share your experience. I hope there's more medical advances for hemophilia B, in the next decade! 😊

    • @mileplamenica1200
      @mileplamenica1200 Рік тому

      @@MentalHealthMonday I'm sorry if I didn't give some real advice, when I have an injury I put something cold on the affected area, keep it elaveted and only use gel made from plant called Arnica (still check with your doctor about it) and also some excersise/activity can be benefficial so the joints are mobile and not stiff (most of my bleeds are in the feet joints), hope this little advice can help
      Also want to add that while hemophilia can be overwhelming at times just keep in mind that it will be fine and I'm sure it will only get easier as he gets older😀😀

  • @suetaylor4018
    @suetaylor4018 Рік тому

    YOU are A GIFT to MILLIONS, JESS!
    I AM SURE that you are helping so many to understand,
    Helping parents to look at a BRIGHTER side,
    AND, ALWAYS, to seek ANOTHER Physician
    When your ❤ tells you to.
    I will continue to watch!
    GRATEFUL THANKS! ❤

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому

      Thank you for leaving a comment! I am happy to hear that my video helped you, even as a nurse, learn more about hemophilia. That is my overall goal w/ my channel. I appreciate the kind words and encouragement, it helps a lot. I hope that others can also gain information from my video. I am working on a more in depth video on Hemophilia B. I am still learning and growing everyday. Nurses are so needed. I am sure your patients are thankful to have you on their side!

    • @suetaylor4018
      @suetaylor4018 Рік тому

      @@MentalHealthMonday
      Thank you , Jess!
      You are right, I love my patients, and they love me!
      I was born to be a nurse.
      It fills my heart with joy!!
      You have given A GIFT to ME today by
      discussing your MISSION and again,
      I am SO GRATEFUL!
      My LOVE to you and your family!
      I will be following you. You are SO
      AMAZING!
      ❤❤❤❤❤

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому

      @Sue Taylor Some people were born to do amazing things, and you were one of them! My nurses during both my births were amazing. I remember crying as the nurse helped me use the bathroom and I told her "thank you! I appreciate everything you do for me!" In that moment I also realized how hard a nurse's job is!
      I will be posting updated periodically! I get genetic testing next week and then we see the specialist in May. So I will also have more information to share. 😊

    • @suetaylor4018
      @suetaylor4018 Рік тому

      @@MentalHealthMonday
      HELLO, Jess!
      Great to hear from you!
      I will anxiously await your next posting; will you be posting
      on a SHORT?

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому

      @@suetaylor4018 I will be doing shorts quite often. I will do our big update once we meet with the specialist and get more answers on a long form video. Trying to squeeze everything in 1 min is very hard, haha.

  • @shilahoman1062
    @shilahoman1062 Рік тому

    Praying for your boy❤❤❤❤

  • @ghents565
    @ghents565 Рік тому +3

    We are all so different, I use DDAVP and HUMATE P. Not knowing we are bleeders is more scary, I almost Bleed out 2 times.
    I thank ppl who give blood. Because I have needed blood transfusions. I do have a power port. I love it. Once healed it's not bad. I am almost 55. We can live a pretty normal lifestyle. No one in my family has the factors either. Only me. They also have a nose spray, my hospital had to order factor for me just in case. He can live a long life. You can reach out to me any time.

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому

      Thank you! I will definitely consider reaching out. I appreciate that a lot. We are considering a port once he turns 12 months, so we can adminstor his factor whenever he needs. He is only at 1% so probably 2-3x a week. Any other advice for raising a little boy with hemophilia?

  • @lisajessup6615
    @lisajessup6615 Рік тому

    Thank you Jess for your strength in making your story about your son's Hemophilia public - I never realised that it was still occurring (can only remember it mentioned with Queen Victoria & the last Romanov prince); hopefully the treatments can be successful for your precious one x

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому

      It was a huge shock to everyone, but I have learned so much. I realize there are other people still being diagnosed as well. I hope to continue to spread awareness. Thank you for the support and listening to our story.

  • @PisceanDesigner
    @PisceanDesigner Рік тому +1

    You and your husband are very brave God bless you both and prayers up that your journey is a lot easier than anticipated. 🙏🏾 New subscriber.

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому +2

      Thank you for the kind words! Our journey is just starting it feels like, but I hope with more time and more answers it gets easier.

    • @PisceanDesigner
      @PisceanDesigner Рік тому +1

      @@MentalHealthMonday you're committed and because he cant fight for himself, you and dad push forward for him. Never feel like you're a bad mom, this journey is proof you are the best mom for the job.

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому +2

      @@PisceanDesigner This made my day! Thank you so much. I hope we can get more answers when we see the specialist in May.

    • @PisceanDesigner
      @PisceanDesigner Рік тому +1

      @@MentalHealthMonday 🙏🏾🙏🏾

  • @gingerbarkley9436
    @gingerbarkley9436 Рік тому

    Had my first Hemophilia, factor 8 deficient baby boy at age 23, he was 2 weeks late. Had a fractured collar bone, blood capular on top of his head. When they brought him to me his heel would not stop bleeding from the 1st stick. They had no idea why ? Put him in the NIC unit to run tests. Ended up giving him blood transfusions, PKU levels would come up as long as transfusing, he lived 4 days. Autopsy revealed he had a tear in his liver which is what killed him & the fact that medical staff had no idea how to treat him. My mom & sisters & I went to be tested, all carriers of Hemophilia. I'm factor 8 & 9 deficient. 17 years later had my 2nd Hemophilia boy by c-section. Put padded matt's down when he started crawling & he wore a helmet. Got his 1st Port-a-Cath at age 3, infused him 3 times a week. He's now 19 on his 2nd port & he infuses himself w/Advate. Broke his arm in 1st grade. Has Arthritis in his growth plate in his elbow. You just have to stay on top of it, your precious child from God will be fine❣ Hemophilia Federation of America HFA is an Awesome resource.

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому +1

      What a journey you have been on! I'm sorry for the loss of your baby.
      We are considering getting a port for easy access. We want to wait until he's over a year old. So far, his bleeding isn't bad. Im happy to hear your son is doing well. This gives me much hope! Thank you for leaving your comment, it is appreciated!

  • @priscilladouthit9651
    @priscilladouthit9651 Рік тому

    Prayers for you and your family especially you son❤

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому +1

      Thank you! We appreciate all the support, love, and prayers. 🙌

    • @priscilladouthit9651
      @priscilladouthit9651 Рік тому

      @@MentalHealthMonday no problem. I will have continued prayers sweetheart for your family

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому

      @@priscilladouthit9651 Appreciate that! Hope we can continue to find understanding and 💪

  • @nicole-cq6tc
    @nicole-cq6tc Рік тому +1

    don’t worry, everything would be fine !!! I am sure !

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому

      Thank you! Everyday gets better, and I also feel it will be okay. 😊

    • @SONORSQ2guy
      @SONORSQ2guy Рік тому

      God-awful song in the background sucks. It’s so high in volume that I can’t hear what you’re trying to say if your child turns up the OK good luck.

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому +1

      @@SONORSQ2guy thank you for letting me know. I will make sure to turn off music in the background.

  • @MaineUSA
    @MaineUSA Рік тому

    God bless you and your family.

  • @memeburgess4467
    @memeburgess4467 Рік тому

    🙏🏽💜🙏🏽💜🙏🏽💜🙏🏽💜🙏🏽

  • @memeburgess4467
    @memeburgess4467 Рік тому

    U nd ur family have my Positive Energy nd Prayers 4 ur beautiful baby boy 💜🙏🏽💜🙏🏽

  • @chideraarueze
    @chideraarueze Рік тому +2

    You're a warrior, Jess.
    Please, keep being strong.
    Can gene-editing solve his case? I just read an article on that. I don't know if you have come across it.

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому +2

      Thank you! I am feeling stronger each passing day. I believe Gene therapy is only FDA approved for adults, and it's 3.5 million dollars. 😵‍💫🤯 Hopefully by time he's an adult or teen there is more options. I would love for him and anyone with hemophilia to have the option of gene therapy!

    • @chideraarueze
      @chideraarueze Рік тому +1

      @@MentalHealthMonday Glad to know you're getting stronger. I'm very hopeful that things will turn out a whole better than it is right now. Wishing your lovely family the very best 🙏🙏...

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому +1

      @@chideraarueze Thank you!

  • @kricketlangendoerfer8387
    @kricketlangendoerfer8387 Рік тому

    I don't talk this way too often, but my younger son did go to parochial school from 3yo until 8th grade. He now calls himself an atheist, but when he does go to mass w me he doesn't do communion, but will chase a priest down to do a confession (which I don't even do). So, he'll figure out his agnostic confusion when he's older.
    Something he used to say to me when he was a child was something only my almost genius son could think of, & he talked to me about it many times.....
    He'd say, "Mommy, when you were a little girl & I was w God waiting to be born......"
    Now, there is the part in the Bible (Isaiah 49:15) that talks about being carved in the palm of God's hand. I don't know if my son got this idea from that, but the idea that he thought he's always existed, he was just waiting w God b4 God chose me & his father to send him to, I thought was adorable, special.
    Now, if we look at your children the same way, they've always been w God, even when you were both children.
    God needed someone special for your angel son. W what you've been thru, he knew you were strong. I'm a survivor myself. Plans might be put on hold, but you're young. I went back to school & got me Degrees when I was almost 40.
    Keep your support groups, from parents who know. & LOL at 16 & sex ed! That's hilarious! Drs have to stop going by the book & look at the age of their patients!
    You're awesome! 💕😻😻💕😷

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому +1

      Thank you for sharing this story! I love this perspective. I don't believe things don't happen for a reason. There is a reason God gave me my son, and why he provided me strength to work through hard issues. My graduate degree might be put on hold, but it is not like there won't be time later on in life. Such wise words you blessed me with today! Many blessings to you, your son, and your family!

  • @EquallyElevated
    @EquallyElevated Рік тому +1

    You can look into treating him with Ayurveda. Blessings to you, your baby boy, and your family

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому +1

      I heard this from someone else. I am going to look into it. Thank you!

  • @miryamrumbaut3505
    @miryamrumbaut3505 Рік тому

    ❤❤❤❤❤❤

  • @theresalovell-somers7472
    @theresalovell-somers7472 Рік тому

    I can't even imagine a Mother abusing her baby. I know it happens everyday alot more than what anyone will admit it. If I saw bruising on my baby I would want answers not just oh that's normal.

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому +1

      Sadly, abuse does happen. I just couldn't even fathom doing anything to hurt my babies. Agreed! Bruising is not normal. Obviously there was something going on.

  • @jennifermckinney8891
    @jennifermckinney8891 Рік тому

    Have they mentioned Pediatric Rheumatologist?

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому

      No, that hasn't been mentioned. The blood test showed that his factor 9 was at 1%.

  • @joyfisher8008
    @joyfisher8008 Рік тому

    First, please hold unto the truth that the Lord formed every part of your children's bodies & He loves them--and you & your husband. Please read Psalm 139:13-16. Enjoy your children today. Jesus says "Do not be anxious for tomorrow for tomorrow will worry about itself. Each day has enough trouble for its own" [Matt 6:34]. Secondly & I'm being a bit facetious with this: it seems like you're already doing a practicum in Trauma Counseling in your own life. Maybe your degree program would accept your channel towards your masters, heck go straight to PhD?

    • @MentalHealthMonday
      @MentalHealthMonday  Рік тому

      Thank you for this scripture! I definitely have to practice being anxious and not worrying right now. I understand God is in control, and I am trying to find understanding in this whole situation. I may not find understanding today, but I know with patience there will come some. That would be great if I could get my hours from my channel. How internship hours work is I have to complete so many direct hours and indirect hours. Personal count as teaching process groups and working with clients, and indirect would be everything else. I have to have a mentor who signs off on my hours, and gives me ratings and feedback, so sadly I don't think my youtube channel would count. The good news is, I do have my clinical hours completed, so it is just my internship. When the time is right, I can go back.
      We are taking it day by day, trying to decide our best steps moving forward, and right now I don't know everything. I appreciate you taking the time to listen to our story.