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Our medical saga continues...

merilungmerilung Posts: 1,177
edited November -1 in Pregnancy and Babies
Freddie has a neurologists appointment Wednesday to be evaluated for neurological problems - based on what I've read I'm sure they're suspecting cerebral palsy, so I'm hopeful they'll be able to tell us how likely it is and how severe they think it might be if he has it. Our primary expected that we would have to wait months to get in, but we got an appointment in 2 days which I am SO grateful for! I have no doubts about our ability to deal with any disability Freddie may have but I would certainly feel better with some kind of clarification as to what we all might be dealing with.
TTC since September 2007 - 8 donor insems in 2012, all BFN. DH had varicocele repair #2 1/3/14.
It worked! Two clomid cycles and two IUI's with injectables all BFN, on to IVF! 3dt of 2 perfect embryos on 12/15/14, BFP 7dp3dt! Frederick Lars born at 37 weeks on 8/15/15!! FET for #2 on 9/29/16 - BFP 5dp5dt!! Bertram Wilder and Mabel Moon born at 28.4 weeks on 3/29/17!
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    old mamaold mama Posts: 4,682 ✭
    edited November -1
    My daughter has CP...there is a lot of help out there. If he has it get in contact with your school district right away. Even as a tiny baby physical therapy can made a huge difference. I am sorry you are going through this but if he does have it with early intervention he can over come and achieve a lot. Keep in touch my thoughts are with you.
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    merilungmerilung Posts: 1,177
    edited November -1
    Thanks, old mama! We will definitely be getting any PT, OT, or anything else we can for him that we can if he has CP or another neurological disability. We're absolutely glad that we're being referred now so if he needs extra help we can start getting it for him very early on in his life.
    TTC since September 2007 - 8 donor insems in 2012, all BFN. DH had varicocele repair #2 1/3/14.
    It worked! Two clomid cycles and two IUI's with injectables all BFN, on to IVF! 3dt of 2 perfect embryos on 12/15/14, BFP 7dp3dt! Frederick Lars born at 37 weeks on 8/15/15!! FET for #2 on 9/29/16 - BFP 5dp5dt!! Bertram Wilder and Mabel Moon born at 28.4 weeks on 3/29/17!
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    Jen727BFJen727BF Posts: 2,304
    edited November -1
    Thinking of your family. I hope you can get some answers.
    183190fb-4512-4f04-a781-76af2d6d42b0_zpsrvzisual.jpg
    TTC No. 2 since Aug. 2014; IVF #1 - Cxld; IVF #2 - BFN
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    hoping4number2hoping4number2 Posts: 321
    edited November -1
    Hopefully you will get the answers you need tomorrow so that baby can get the therapies he needs!
    16bdg7b.jpg
    Baby #1: April 2011 TTC #2 since 2014 Attempt #10 = BFP! Baby arrived January 2016
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    tinydancertinydancer Posts: 1,210 ✭
    edited November -1
    I may have missed a post saying anything about you suspecting an issue... but is he having slow movements or no at all? its it brachial palsy perhaps? if so see a chiro first to adjust him and see if he gets movement back. with a fast delivery, he could have pinched a nerve. my 2nd child had this and he could not use him arm for a week. just an option too.
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    kelleymelkelleymel Posts: 1,402 ✭
    edited November -1
    I'm sorry your little babe is going through all of this. I'm glad you are able to get him into a specialist quickly. A close friend of mine has CP and has been wheelchair bound her entire life. She relies on assistants to help her, but let me tell you that the CP never slowed her down for 1 second. She was able to graduate college and went on to get her Master's in Social Work. She constantly advocates for people with disabilities. She's one of the strongest people I know.
    TTC #1: BFP Cycle #11 IVF (2014)
    TTC #2: IVF April 2017
    BFP: FET Due February 2018
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    old mamaold mama Posts: 4,682 ✭
    edited November -1
    I sent you an email. I identified myself as Old Mama. If you didn't get it please let me know on here. It is frustrating trying to communicate! I tried twice.
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    ForeverakidForeverakid Posts: 312
    edited November -1
    Oh Merilung I am sorry you and your family are enduring this. Sending thoughts of peace your way.
    SMBC
    Lucky IUI #6!!!
    Expected Arrival Date is January 19, 2016

    tt1c5b4c.aspx
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    merilungmerilung Posts: 1,177
    edited October 2015
    Thanks for the kind words y'all. Tinydancer, his movement seems developmentally normal so far (he's got a little bit of head lag but nothing they're worried about at this point, they just recommended more tummy time) but he has sustained ankle clonus in both ankles which is often associated with CP.

    The neurologist today said that he looked good, but between his cord avulsion at birth and his NICU stay for dangerous jaundice levels (which I'm actually not sure if I posted on this forum about, but it was scarier than hell) she wants to do a MRI. Since he has to be sedated the anesthesiologist wants him to be a little bigger so we have the MRI scheduled for November 16th. If the MRI is normal we'll do a follow up in February to check on his progress. The neurologist did say that if he was profoundly disabled we would be seeing more signs of dysfunction at this point, so she does NOT expect him to have a disability to the point where he can't eat, speak, etc. which was my fear. She said that there's a good chance he's totally normal and just has high tone in his legs for whatever reason, but he could have CP or Kernicterus and need some level of intervention. The good thing is that she thinks if he does have brain damage of any kind that it's likely to be pretty mild.

    Anyway, I know we're SO blessed and so, so lucky compared to so many folks but between the cord avulsion and the super high jaundice levels and the false positive metabolism screen and now all this neurology stuff I am SO SO SO ready to be done with the children's hospital for awhile. Here's hoping his MRI comes back clear and this is the last of our troubles for a bit.
    TTC since September 2007 - 8 donor insems in 2012, all BFN. DH had varicocele repair #2 1/3/14.
    It worked! Two clomid cycles and two IUI's with injectables all BFN, on to IVF! 3dt of 2 perfect embryos on 12/15/14, BFP 7dp3dt! Frederick Lars born at 37 weeks on 8/15/15!! FET for #2 on 9/29/16 - BFP 5dp5dt!! Bertram Wilder and Mabel Moon born at 28.4 weeks on 3/29/17!
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    blkbrd3blkbrd3 Posts: 1,221 ✭✭
    edited November -1
    My fingers are crossed and I'm hoping the next round of tests is smooth, easy, and very low stress.
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    allie8573allie8573 Posts: 181 ✭✭
    edited November -1
    I keep checking for updates. Glad you got some more positive news today and I will have your lovely family in my thoughts!! Your little guy is so lucky to have such awesome parents :)
    Lucky cycle #9: IVF Antagonist Cycle in February 2015! 5dt of a grade 4AA blastocyst and got my bfp 5dp5dt
    Ruthie Evan born 10/19/2015 at 36+6
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    katookatoo Posts: 324 ✭
    edited November -1
    I'm sorry you guys have gone through so much. Fingers crossed the MRI is fine.
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    flashpackerflashpacker Posts: 363 ✭
    edited November -1
    Like everyone else, have fingers cross for you. You really have been put through the wringer of worry. Sending good wishes that the MRI is ok come Nov.
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    blkbrd3blkbrd3 Posts: 1,221 ✭✭
    edited October 2015
    I apologize. I made a mistake earlier. I forgot to remind you that everything is alright. You are in a good place. You can do this.

    Like every other spiritual being, your child will have moments where he struggles and where he excels in his physical body. He will have all kinds of challenges that you will wish you could take on for him. He will succeed. This is the human adventure.

    During your trek through the human experience do not forget that through you are connected to a rich living history of parents who passionately love and cherish their children. Your inheritance from this lineage is the absolute knowledge that your son is a whole, good, and beautiful gift unto the world with out regard to his labels, challenges, or boxes society may try to place him in.

    Your fears and concerns are real and valid yet CP is insignificant to who your son is because it does not define him nor change your love for him.

    Physical challenges may not be the dream you had for your son but life seldom asks our permission nor follows our dreams to the letter. Sometimes it takes us to places that are even more rewarding and memorable than we could have imagined.

    You've got this.
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    merilungmerilung Posts: 1,177
    edited November -1
    Just wanted to update everyone - I started having panic attacks about Freddie's health after our visit to the neurologist and was diagnosed with postpartum depression with psychotic features. I'm back on a SSRI (I was on them pre-pregnancy for a pre-existing anxiety disorder) and I have some valium in case of panic attacks but I'm currently doing much better. I'm very, very glad to have a healthcare provider who took me seriously and got me treated immediately when he and my husband recognized something wrong.

    Our GP also sent a physical therapist who works with kiddos under 3 with physical disabilities to our house to assess Freddie. She said he looks developmentally normal to her and would be surprised if he needs therapy - she couldn't trigger his ankle clonus when she visited which she said was a good sign, and she is very hopeful that it was just some early hyperreflexivity that will completely fade on its own in time. His MRI is still set for Nov. 16th, so fingers crossed for a normal result, but so far everything looks pretty good.
    TTC since September 2007 - 8 donor insems in 2012, all BFN. DH had varicocele repair #2 1/3/14.
    It worked! Two clomid cycles and two IUI's with injectables all BFN, on to IVF! 3dt of 2 perfect embryos on 12/15/14, BFP 7dp3dt! Frederick Lars born at 37 weeks on 8/15/15!! FET for #2 on 9/29/16 - BFP 5dp5dt!! Bertram Wilder and Mabel Moon born at 28.4 weeks on 3/29/17!
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    ShannyShanny Posts: 2,456
    edited November -1
    I am so sorry you have all had such a rough start. I am so happy though that Freddie's prognosis is looking up and that you are also taking care of yourself! Hoping for great news later this month and thanks for taking the time to update us, I am checking often for what I always hope is good news.
    image_zps64579b54.png
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    blkbrd3blkbrd3 Posts: 1,221 ✭✭
    edited November -1
    Thank you for sharing an update. I'm sorry there's another wrinkle in your family health saga but I am absolutely thrilled you are taking care of yourself.
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    babybabybabybaby Posts: 1,564
    edited November -1
    oh, what a great update! that all sounds very promising. your family is in my thoughts.
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    TurtlehartTurtlehart Posts: 834
    edited November -1
    So glad that both you and Freddie are getting the help needed!
    Our sweet boy has arrived after TTC'ing for 4 years!
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    flashpackerflashpacker Posts: 363 ✭
    edited November -1
    Glad to hear that you are feeling better and that things are looking good for Freddie too. You've had a ridiculous amount of scares to deal with, after all the struggles with getting pregnant in the first place. It's no wonder it has taken a toll on your mood and anxiety. Hope it all gets easier from here on out. *Good vibes*
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    merryshannonmerryshannon Posts: 503
    edited November -1
    Oh my gosh - I've been offline for a while and am only just now catching up, what a roller coaster you guys have been on! I'm so sorry your family's experiencing all these anxious unknowns. :( Glad to hear that if there is an issue it's likely to be somewhat minor. Please take care of yourself and I really hope that this is the last of the baby scares and worries for a good long while, you guys have certainly had more than your share. <3
    2ekr8s1.jpg
    Early ovarian failure. 4 failed ICIs, 6 failed IUIs. Donor Egg IVF in Greece: IVF#1 12/2014 - BFP, miscarried at 6WK3D. IVF #2 4/2015 - BFN. IVF#3 7/2015 - BFP. Baby boy Searc born 4/8/16 - 9lbs, 2 oz <3

    TTC Blog
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    Jen727BFJen727BF Posts: 2,304
    edited November -1
    How was the MRI? Hope all is well.
    183190fb-4512-4f04-a781-76af2d6d42b0_zpsrvzisual.jpg
    TTC No. 2 since Aug. 2014; IVF #1 - Cxld; IVF #2 - BFN
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    jones.mom02jones.mom02 Posts: 295 ✭
    edited November -1
    Thinking of you and Freddie! I hope all is well!
    Celebrating 10 years together with 2 precious babies.
    Born: Jan, 2016 Home 2 IUI, partner carried
    Born: Nov, 2016 Home 1 ICI, I carried
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    merilungmerilung Posts: 1,177
    edited November -1
    We were told the wrong date initially - he's actually scheduled for the 19th, this Thursday, so I should have a MRI update Thursday or Friday.
    TTC since September 2007 - 8 donor insems in 2012, all BFN. DH had varicocele repair #2 1/3/14.
    It worked! Two clomid cycles and two IUI's with injectables all BFN, on to IVF! 3dt of 2 perfect embryos on 12/15/14, BFP 7dp3dt! Frederick Lars born at 37 weeks on 8/15/15!! FET for #2 on 9/29/16 - BFP 5dp5dt!! Bertram Wilder and Mabel Moon born at 28.4 weeks on 3/29/17!
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    StephnHeidsStephnHeids Posts: 407
    edited November -1
    I will be at the Children's hospital in the morning for work! I will be sending good vibes :)
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    merilungmerilung Posts: 1,177
    edited November -1
    We'll be at Cardinal Glennon, not Children's, though we accept good vibes from literally anywhere! :)
    TTC since September 2007 - 8 donor insems in 2012, all BFN. DH had varicocele repair #2 1/3/14.
    It worked! Two clomid cycles and two IUI's with injectables all BFN, on to IVF! 3dt of 2 perfect embryos on 12/15/14, BFP 7dp3dt! Frederick Lars born at 37 weeks on 8/15/15!! FET for #2 on 9/29/16 - BFP 5dp5dt!! Bertram Wilder and Mabel Moon born at 28.4 weeks on 3/29/17!
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    hoping4number2hoping4number2 Posts: 321
    edited November -1
    I love Cardinal Glennon! My DS has been there more times than I would prefer, and they have always been so wonderful.
    16bdg7b.jpg
    Baby #1: April 2011 TTC #2 since 2014 Attempt #10 = BFP! Baby arrived January 2016
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    TurtlehartTurtlehart Posts: 834
    edited November -1
    I've been thinking about you all weekend and hoping the MRI yielded good results and information.
    Our sweet boy has arrived after TTC'ing for 4 years!
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    merilungmerilung Posts: 1,177
    edited November -1
    We just got results back from Freddie's neurologist today and both brain and spine look 100% normal! She still wants to follow up with him at 6 months since kids can have CP (especially mild CP) and have a normal MRI, but she said this is all very reassuring.
    TTC since September 2007 - 8 donor insems in 2012, all BFN. DH had varicocele repair #2 1/3/14.
    It worked! Two clomid cycles and two IUI's with injectables all BFN, on to IVF! 3dt of 2 perfect embryos on 12/15/14, BFP 7dp3dt! Frederick Lars born at 37 weeks on 8/15/15!! FET for #2 on 9/29/16 - BFP 5dp5dt!! Bertram Wilder and Mabel Moon born at 28.4 weeks on 3/29/17!
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    tinydancertinydancer Posts: 1,210 ✭
    edited November -1
    CONGRATS!! so happy for you all
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