tag:blogger.com,1999:blog-1271224005622940272.post1951367263295702666..comments2024-03-15T20:34:25.235-07:00Comments on For the Love of Each Other: Updates and difficult decisions for JuliaCareyhttp://www.blogger.com/profile/12144500630297585656noreply@blogger.comBlogger29125tag:blogger.com,1999:blog-1271224005622940272.post-42590147147030088922013-10-31T22:47:39.795-07:002013-10-31T22:47:39.795-07:00I was reading a RR blog that talked about Yulia. I...I was reading a RR blog that talked about Yulia. I did a search until I found a link to your blog. I am praying for Julia and would love to know what has taken place since January.Anonymoushttps://www.blogger.com/profile/05084349022086333202noreply@blogger.comtag:blogger.com,1999:blog-1271224005622940272.post-74135965220126824012013-05-31T20:38:46.624-07:002013-05-31T20:38:46.624-07:00I just want you to know that I have never read you...I just want you to know that I have never read your blog until tonight (may 31) - I found it after I had an overwhelming need to find out whatever happened to the little girl Yulia I had learned of a couple of years ago through a friends blog who had mentioned a fundraiser through a blog friend of hers - nogreaterjoymom - Anyway, tonight I am not sure why but I just simply had to find out whether Yulia had ever been adopted. Tears and Praise erupted when I found your blog that yes indeed you have Julia!!! I am so so thrilled to find this out. Of course, I also now see that you have this prayer request from back in January/ I just want you to know that I think God brought Julia to my mind tonight and I will be praying for her. Love and Prayers, LK in MississippiUnknownhttps://www.blogger.com/profile/08383641297137607803noreply@blogger.comtag:blogger.com,1999:blog-1271224005622940272.post-24012519242023361982013-03-16T19:54:15.224-07:002013-03-16T19:54:15.224-07:00Just checking in, and sorry to say I missed this p...Just checking in, and sorry to say I missed this post two months ago! Praying more solutions have been found and peace has begun at home. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1271224005622940272.post-69335586096144685372013-02-15T21:41:21.821-08:002013-02-15T21:41:21.821-08:00I'm here if you wish to chat about your daught...I'm here if you wish to chat about your daughter with the behavioral issues. Our 8 year old daughter, adopted from Ukraine, is non-verbal and has huge behavioral issues, especially in regards to her peers, along with some other issues I'm not comfortable sharing about online. Feel free to get in touch with me through Katya's blog if you want to talk. I can tell you that in addition to all the things that are being addressed medically, we are also using nutritional supplements with some good success. Hope Annehttps://www.blogger.com/profile/09886501298076452981noreply@blogger.comtag:blogger.com,1999:blog-1271224005622940272.post-6189090408690332502013-01-25T17:52:37.248-08:002013-01-25T17:52:37.248-08:00Just got caught up with your family. I agree that ...Just got caught up with your family. I agree that you should seek a second opinion on Julia's surgery if you are still hesitant but as a physical therapist, I concur that the severity of her scoliosis is likely life threatening without intervention. Our daughter is a lesser shade of Avery. Her doctors feel she is FAE with oppositional deficiant disorder ADHD and possibly bipolar. We have pursued pharmacetical, holistic and behavior interventions with some success. Decisions for Julia involve a physiological persepective. Decisions for Avery involved physciological, mental and emotional perspectives. Praise God that He is Lord over all and I am praying that He gives you wisdom to choose the right paths for your girls.Cathyhttps://www.blogger.com/profile/05658990795703046615noreply@blogger.comtag:blogger.com,1999:blog-1271224005622940272.post-30380898222906022962013-01-15T22:11:51.636-08:002013-01-15T22:11:51.636-08:00A friend of mine from high school has a daughter w...A friend of mine from high school has a daughter with a form of dwarfism and severe scoliosis. She just TODAY under went surgery with the top spinal surgeon in the US (and some say the World). His name is Dr. Lenke and he is in St Louis, MO. I will include a link to his site...maybe he can help Julia?<br />http://spinal-deformity-surgeon.com/#<br />From what I understand, he is the surgeon that other surgeons call when they can't help someone. We will pray that you will have a clear answer as to where to take Julia so she can get the help she needs.Anonymoushttps://www.blogger.com/profile/17012481641875986540noreply@blogger.comtag:blogger.com,1999:blog-1271224005622940272.post-52296024447797562032013-01-15T05:10:37.732-08:002013-01-15T05:10:37.732-08:00I wanted to suggest that you take Julia for a seco...I wanted to suggest that you take Julia for a second opinion. Not that your current surgeon would be incorrect, but a different surgeon might have a different approach. After a bad burst fracture that left my spine V shaped I visited 4 different neurosurgeons before I found one willing to do surgery to fix it. Changed my life. There are a lot of scoliosis support boards out there. See if there are any surgeons with a good reputation, etc in your area. It is a scary surgery but the results for me were amazing. I'll keep your family in my prayers! Heatherhttps://www.blogger.com/profile/04857620709141600268noreply@blogger.comtag:blogger.com,1999:blog-1271224005622940272.post-73026584382412249282013-01-14T06:24:55.701-08:002013-01-14T06:24:55.701-08:00Regarding Avery,there are many studies confirming ...Regarding Avery,there are many studies confirming that fish oil improves brain function and can even increase the amount of brain. I have a son that has features of FAE/FAS. Giving him high dose (pharmaceutical grade) fish oil has made an ENORMOUS difference for him. He is current 12 and doing fabuluous!PRAISE GOD:) He takes a fish oil with high amounts of DHA (the kind of fish oil found to help brains the best). He takes 3 capsules of 1200mg fish oil (600mg DHA) 3-4 x daily. This helps him regulate his mood. If he misses too many doses he starts to melt down when he is frustrated or if corrected. We also found that some amino acid supplements that help him make more dopamine and norepinephrine. They help him regulate his mood and behavior. When I added D-L phenylalanine his school performance increased dramatically and when I added a supplement called dopa plus and tyrosine (both by pure encapsulations) he has done even better. He is now self motivated with school, cheerful, affectionate and loving, and I am so enjoying our time together. he has no meltdowns anymore. I make a shake for him every morning and put the supplments in it. He chews lemon flavored adult fish oil capsules. I hope you can find some fish oil that she will take. Barleans makes a flavered swirl (tastes like a smoothie). For help figuring out what is wrong with her neurotranmitters see a functional medicine dr or a chiropractor that specializes in such things. You can find an MD in your area at the instititute of functional medicine. They list practioners. Conventional medical doctors tympically add prescription after prescription of mind altering drugs that don't correct the underlying issues. I am so grateful with our son that we have corrected the imbalances causing the behavior. I hope this helps. Again please try fish oil. It really works miracles but you must continue to use it. Praying for you and your family.kkhttps://www.blogger.com/profile/09050655629663488402noreply@blogger.comtag:blogger.com,1999:blog-1271224005622940272.post-89035817674178925432013-01-13T18:19:20.093-08:002013-01-13T18:19:20.093-08:00This comment has been removed by the author.Laurahttps://www.blogger.com/profile/11351372122337532918noreply@blogger.comtag:blogger.com,1999:blog-1271224005622940272.post-57081324733304365712013-01-11T13:09:45.801-08:002013-01-11T13:09:45.801-08:00Thank you Tatiana! Your words of comfort mean so ...Thank you Tatiana! Your words of comfort mean so much to me. I tried to email you once and it came back to me "undeliverable." Did your email address change? We will trust God to guide us in caring for Julia : ) Careyhttps://www.blogger.com/profile/12144500630297585656noreply@blogger.comtag:blogger.com,1999:blog-1271224005622940272.post-11284356528194364142013-01-11T13:06:11.064-08:002013-01-11T13:06:11.064-08:00The doctor did not mince words....she said if we d...The doctor did not mince words....she said if we don't treat it she will die from pulmonary or cardiac problems.Careyhttps://www.blogger.com/profile/12144500630297585656noreply@blogger.comtag:blogger.com,1999:blog-1271224005622940272.post-72696189227812988622013-01-11T11:24:58.340-08:002013-01-11T11:24:58.340-08:00I'll be praying for you. One of my children ha...I'll be praying for you. One of my children has severe scoliosis too, very much like Julia's (I do not know the angle, but it's pretty bad). A surgeon in Russia said that it can only be corrected with surgery, but she also said that he might not ever be able to walk after the surgery (he walks now that his feet has been surgically corrected). She also said since his feet are still not quite right and the doctors say they can't help with it any further, correcting the scoliosis might not do any good at all. Because of his feet his spine will still be curving. She did not say anything about repeated surgeries or the risk of death if not treated, so your information came as a shock to me. We have not been able to get a second opinion over there. He's been seen by a number of surgeons, but they concentrated on their area (feet, legs, lower abdomen issues) and none of the records say anything about his scoliosis other than just state the fact.<br />Hopefully we'll be able to consult a doctor here in the US eventually. But I cannot say when. Hopefully not too late.Tulsahttps://www.blogger.com/profile/04928827637785308799noreply@blogger.comtag:blogger.com,1999:blog-1271224005622940272.post-44631685799546053472013-01-11T07:36:41.860-08:002013-01-11T07:36:41.860-08:00Thanks for the info....I will definitely keep this...Thanks for the info....I will definitely keep this in mind with Avery. I am not so sure she doesn't have FAS either. I am curious as to what the developmental pediatricians think.Careyhttps://www.blogger.com/profile/12144500630297585656noreply@blogger.comtag:blogger.com,1999:blog-1271224005622940272.post-48596405193960223232013-01-11T07:33:21.302-08:002013-01-11T07:33:21.302-08:00I will look into it! Thanks : )I will look into it! Thanks : )Careyhttps://www.blogger.com/profile/12144500630297585656noreply@blogger.comtag:blogger.com,1999:blog-1271224005622940272.post-4524778133930497212013-01-10T13:35:43.986-08:002013-01-10T13:35:43.986-08:00Avery might not have FAS, But she very much could ...Avery might not have FAS, But she very much could have FAE (Fetal achohal affects) both my little siblings have FAS. And we have an FAS specialist. We learned that FAE is just as bad as FAS, they still have ALL the affect, they just dont have the facial features (so then it makes the dx harder because theres no features to see). And the higher functioning they are, the worst they are. My little brother is severaly affected and is low functioning. But my little sister is high functioning and her behaviors are MUCH worse! It takes meds and therapy to help them. And usally ALOT of meds because the achohal ruins the chemicals in there brain and they cant controle themsevles. Depression,bipoler, personality disorders, you name it they can have it. They can go without sleeping for DAYS on end and there energy level is threw the roof, there behaviors are often worse towards the evening. They get to over stimulated in a regular school setting which sets off there anxiety and so they act out because they cant handle it. They obsess on things and no matter how hard you try to break the habbit it doesnt work. And no matter how many times you tell them no or disaplin a behavior it wont work because there sense of right and wrong is off, so it can also be a danger because that sense is off, so they will run out in the street or run off where as a "normal" child would know its bad because they could hurt and they just cant grasp that. Its hard, but you just got to find the right dr that understands FAS/FAE that can work with you and her. You cannot go just by facial features, and drs often mis dignose FAE because of that. <br /><br />Ill be praying for julia! I know its a hard surgery, and any surgery can comprimise these kids. Heres a caringbridge of a little boy we are friends with, he did pretty darn well considering what he had to go threw because his scoliosis was so bad, but he had great surgoens and thats very key! http://www.caringbridge.org/visit/jamesmcneal , and actually the rods are better then the fusion, from being a PT tech a saw way to many fusions go very wrong, and another friends little boy had the fusion done for his and she wish she never did it because it didnt correct it and now his hips are disclocated because of it and its not like they can undo a fusion and the surgoen wasnt good. But that little boy on the caringbridge gos to A.I dupont and they have been fantastic with him! Leahhttps://www.blogger.com/profile/17223146034978461473noreply@blogger.comtag:blogger.com,1999:blog-1271224005622940272.post-35719418370172097832013-01-10T07:09:30.986-08:002013-01-10T07:09:30.986-08:00any mention of the Mehta casting for scoliosis.......any mention of the Mehta casting for scoliosis..... I work at a childrens hospital in atlanta and we are doing this now...<br /><br />http://www.scoliosis.org/forum/archive/index.php/t-5190.htmlAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-1271224005622940272.post-50412266659114039602013-01-10T06:43:46.028-08:002013-01-10T06:43:46.028-08:00Have you heard of The Clear Institute...they have ...Have you heard of The Clear Institute...they have a non surgical way to deal with scoliosis...just an FYI http://www.readthehook.com/71471/straight-talk-could-new-scoliosis-treatment-hold-promise Amandahttps://www.blogger.com/profile/17488510903997961793noreply@blogger.comtag:blogger.com,1999:blog-1271224005622940272.post-80768438484301372962013-01-09T19:39:19.917-08:002013-01-09T19:39:19.917-08:00keeping you and your family in our prayers. My li...keeping you and your family in our prayers. My little boy has scoli and kyphosis(forward curving of the spine) and he has been monitored at our local Shriners for several years. We have faced the possibility of surgery and it is so hard to weigh the risk of surgery vs the benefit. He has a multitude of health issues including chronic lung disease so for now the risk outweighs the benefit. I pray that God gives you peace and wisdom as you walk this road and have to make these difficult decisions. Juniorhttps://www.blogger.com/profile/03719754876592849914noreply@blogger.comtag:blogger.com,1999:blog-1271224005622940272.post-16890363161018638142013-01-09T18:13:14.593-08:002013-01-09T18:13:14.593-08:00Oh my, she is in our prayers, and you also as you ...Oh my, she is in our prayers, and you also as you seek the best way to care for her. In the meantime can I suggest, as a loving form of touch and soothe therapy, massage oil therapy in the form of the "Raindrop" technique, or the blend "Valor", both by Young Living? This is NOT a sales pitch - we use aromatherapy massage oils for our children for varying symptoms, which is a way for us to lovingly and soothingly address the traumatized area, while we pray for our child and the best direction to take. Not suggesting this is healing in any fashion, but it is calming and helps to really address our prayers and focus on the area of need. What a difficult road ahead for you all, such a sweet little girl who has come so far. May the Lord direct your steps. QueenBhttps://www.blogger.com/profile/05305498255140653683noreply@blogger.comtag:blogger.com,1999:blog-1271224005622940272.post-56970535475371500662013-01-09T16:20:00.990-08:002013-01-09T16:20:00.990-08:00Our former assistant pastor has a daughter with se...Our former assistant pastor has a daughter with severe scoliosis and she has had the surgeries every 6 months since I think she was around 8 and she is now 13. She has had the surgeries at Shriner's Hospital in Philadelphia. Just thought I would mention that in case you wanted to get a second opinion.Lynnhttps://www.blogger.com/profile/07847186677073325064noreply@blogger.comtag:blogger.com,1999:blog-1271224005622940272.post-18793766327135155592013-01-09T13:45:21.382-08:002013-01-09T13:45:21.382-08:00All I can do is pray. So prayers I give. For Julia...All I can do is pray. So prayers I give. For Julia. For you Carey. For your entire family. For wisdom. Patience. Understanding. For unconditional love and strength surrounding all. Peace & Love xoAnonymoushttps://www.blogger.com/profile/14970058224167186831noreply@blogger.comtag:blogger.com,1999:blog-1271224005622940272.post-68599774456762298152013-01-09T12:38:07.558-08:002013-01-09T12:38:07.558-08:00Carey! I can only imagine how hard to you now. Yo...Carey! I can only imagine how hard to you now. You gave so much to these children. Julia survived and turned from plants in the child only due to you.<br />You're so strong! I have never met people like you. All will be well! Your family deserves it like no other. Tears overwhelmed me when I read your blog.<br />We are praying for you all!<br />We love you.tat-ya-na0808https://www.blogger.com/profile/17186174084873241778noreply@blogger.comtag:blogger.com,1999:blog-1271224005622940272.post-63871633078505070212013-01-09T10:46:59.675-08:002013-01-09T10:46:59.675-08:00So sorry for all you are going through. My 6 year...So sorry for all you are going through. My 6 year old granddaughter also has severe scoliosis. A brace was tried when she was about three, but she was so scared of it and it became such a battle that they just abandoned that. When she was four and a half her curve had worsened to the point it was causing her to have breathing problems. At that time the doctor told my son and DIL that they just couldn't "wait and see" any longer. She had two rods on either side of her spine inserted and then had to wear a brace for a short time. She has only had to have one surgery since then to lengthen the rods and it was just an overnight stay with very minimal trauma to her. The first surgery is very hard - but my granddaughter (who is also special needs)did well. Here is a link to a blog post I wrote about her at the time http://www.knittingthrulife.blogspot.com/2011/07/tough-week.html Wishing all of you the best whatever you decide to do. Dianehttps://www.blogger.com/profile/11376259652572711131noreply@blogger.comtag:blogger.com,1999:blog-1271224005622940272.post-48038206062122641772013-01-09T10:24:35.202-08:002013-01-09T10:24:35.202-08:00Yes, I agree with the first commenter--God be with...Yes, I agree with the first commenter--God be with you, and before you, and behind you. I am so sorry your family is facing this difficult decision. But please remember where Julia would be without you. In a way, you can't choose wrongly--you will be trusting God to lead you, while using your best parenting hearts and thoughtful minds (as well as the minds of countless experts), and just a short time ago Julia had none of that. Nobody cared. Nobody prayed. Nobody was doing everything in their power to figure out what she needed and what was best for her. So, whatever you do will be so much better than what she would have gotten there in the orphanage. God bless you all.Blessedhttps://www.blogger.com/profile/09079902364989480862noreply@blogger.comtag:blogger.com,1999:blog-1271224005622940272.post-87909006926540885632013-01-09T09:11:30.005-08:002013-01-09T09:11:30.005-08:00The doctor discussed the VEPTR (vertical expandabl...The doctor discussed the VEPTR (vertical expandable prosthetic titanium rib) method. This is what they are talking about as a possiblity, yet is risky and complicated. At least that is what I gathered from the dr yesterday. I am sure we are going to be doing a lot of research. Thank you for the info!Careyhttps://www.blogger.com/profile/12144500630297585656noreply@blogger.com