Family Pic Nov 2015

Family Pic Nov 2015

Tuesday, January 8, 2013

Updates and difficult decisions for Julia









I am writing today to briefly update on Aaron, a bit more with Avery, and to ask for prayers for some difficult decisions we are going to be facing with Julia.


I will start with darling Aaron.  Amazingly, he can now do SOME walking completely unassisted.  It has been a lot of hard work on his part, but he can take approximately 25 steps without a walker, arm crutches, or leg braces on.  In fact, he walks better unassisted than he does with arm crutches.  Hopefully I will get a video up here soon!  I am still homeschooling him.  At the beginning of the year, I started him and Regan with kindergarten.  Within weeks it was very evident that Aaron was not at a kindergarten level.  He was struggling and I wasn't accomplishing anything but making learning frustrating and exhausting for him.  So I decided to back him up to a K4 curriculum and he is doing much better now.  It is still slow and extremely repetitive, but he is making more progess than he was.   Here is what Santa got Aaron for Christmas:




The money for his new bike was actually donated anonymously by a family from our church.  Since we didn't know who it was and the bike was delivered on Christmas eve, we thought it would be fun to have it from Santa!


To be completely honest, Avery has been much more difficult than we imagined.  For those of you who have followed our blog since we were in Ukraine with her, you may remember some of the struggles that I wrote about.  We had high hopes that getting her home here in our family, providing loving yet firm boundaries would alleviate many of her behaviors that we had also seen with Aaron.  She has improved some since we came home, but our struggles with her are daily, time consuming, exhausting, draining, and painful.  I have scars on my arms from her getting her fingernails into me.  At the orphanage, they told us that she cries for no reason.  They assumed the cause was frustration from not being able to talk.  She does cry quite a bit for what seems like no reason.  She is impatient, becomes frustrated easily, is destructive, willful, and violent to herself and adults in authority over her.  Thankfully, she does not typically become violent with the other children.  Since she has been home we have taken her to hearing dr, eye dr (1st and 2nd opinion) urology, neurology, genetics, and speech evaluation.  Next week she has an Occupational Therapy evaluation and we are working on getting her an appt with Developmental Pediatrics.  Results so far:  hearing is good to the best that they could test her; she has a second prescription for eye glasses that is currently being filled (she intentionally snapped her first pair in half and threw them in the trash); urology has agreed with us that her temper tantrums revolving around "pottying" including crying, screaming, attacking anyone in range, digging in her crotch, taking all of her clothes off and writhing around as if in pain on the toilet is behavioral; neurology conducted an EEG and MRI and both were normal; genetics does not think she has Fetal Alcohol Syndrome and is conducting the same genetic testing/blood work they did for Julia (2 months for results)...the genetics dr took some measurements: body length and weight are that of a 5 year old, head the size of a 2 year old......this means she has a small brain and he indicated that behavioral issues tend to occur in such cases; speech evaluation through the hospital is not as critical as she is receiving intensive speech therapy at school 5 days a week, but are waiting to have a weekly opening there as well.  She had been attending school for the entire morning, but shortly before Christmas we decided to take her out of school as her behavior was becoming too difficult to manage in that setting.  She was scaring other children at school and causing some to cry.  Since the break, we have her back at school for a half hour for her speech session only.  Speech is one on one and she seems to have a rapport with the speech teacher.  She is learning so much in there, but is still not using what she is learning as a tool to communicate.   After her OT eval, we are going to see if she can get OT through the school as well.   There is typically a 3-6 wait for appts with developmental pediatrics, but the genetics dr is going to see what he can do to bump her up on the list.   I hate to sound so negative about her, but it is the reality at the moment.  She does have sweet moments.  She has bonded with me and does at times seek comfort and affection with us.  We all love her dearly and desperately want to help her be all that she can be. We are doing everything we can to get her the right help.  Here is a picture in one of her loveable moments with Rachael:



Julia......

.....I did not expect what we learned today at a drs appt. for Julia.

But before I get into that, I want to back up and say that she has continued to thrive and improve in every area of her life.  (And she is just as sweet as ever.)   The most significant improvement she has made is in feeding clinic.   Julia is now eating food orally!  We have not fed her by g-tube in weeks.  Every meal I cook, I blend to a stage 2 baby food consistency.  And she gobbles it down!  Tonight for dinner she ate crusted parmesan tilapia and salad consisting of romaine lettuce, tomatoes, shredded cheese, and croutons.  It is so good to see her eating and wonderful that she is socially joining us at the dinner table.  She also drinks water, juice, and milk through a squeeze bottle. 

Julia has also been attending PT for a few months now.  She has bilateral AFOs that she detests.  She is a strong little girl, but does not like to cooperate with the therapists.  She definitely has a mind of her own about when she wants to "perform."  And she still resists anyone trying to manipulate her position or holding any limbs where she doesn't want them.  Anyways, they recommended we take her to an orthopedic dr to make sure her hips are stable.....mainly that her bones are solidly in the hip socket.  They also wanted an xray of her spine as she has been observed to have scoliosis.  We assumed they wanted to get an opinion on a scoliosis brace for her.

So when we first arrived at orthopedics today, they immediately sent us to get the xrays done.  Then they took us back to a room while the dr reviewed the pictures.  Here is the xray of Julia's spine:



I am not sure how well it can be seen on this picture.  It was taken by an iphone from a computer screen.  But looking at this picture directly, my jaw dropped.  I couldn't believe how curved her spine is.  The lower spine is almost all the way over to the left side of her body.  I was horrified looking at this picture.  It's like her spine makes an "S" down her body.  But I still didn't understand what this meant.  I knew what scoliosis is but virtually nothing about its complications or prognoses.  When the dr came in, we learned that her case is pretty severe.  Curves that are changing rapidly or greater than 45 degrees usually require surgery.  Julia's curve is 50 degrees.  This is not good.  I was trying to stay focused on the medical information the dr was telling me, but it kept sounding more and more serious and complicated by the minute.  Doing nothing at all in this type of case, she will eventually die.  It could be years, but it will get worse and it will begin to effect her pulmonary and cardiac function.  The dr says she would probably die of pneumonia.  Surgery is the only thing that can be done to correct this.  But the risks of complications are high for the type of rods they would most likely need to use.  Since she is so young and still growing, they would need to use growth rods.  This would mean having surgery to put in these rods and then more surgery every 6-9 months for the rest of her life to put longer and longer rods in as she continues to grow.  The dr explained that the surgeries are very high risk for several different complications.  If she weren't growing, they would fuse the spine.  All we have decided at this point is to wait 6 month to see how much and how fast she is growing.  We want to see if there is the possibility of fusing her spine and avoiding the decision between the growth rods vs. doing nothing.  We would also need 6 months to get her weight up as she would need more fat padding on her back in order to do the surgery.  The dr said waiting a year would be too long.  If she began to have any of the pulmonary or cardiac problems, surgery would then be out of the question.

We made Julia a part of our family thinking she would most likely pass away a year or two after we adopted her.  Deep down inside, I never really believed she had Cockayne Syndrome (CS).  But it didn't matter because we had put this in God's hands and vowed to love and care for her however long God wanted her with us.    We then found that she did not have CS, but several other unique chromosomal abnormalities.  With this diagnosis, we didn't have a clear cut prognosis and were advised to treat her symptomatically.   We have been caring for Julia over the last year and half as if the sky is the limit for her.  It's been all green lights and she has been going and going and going.   Today was hard.  Today was finding out that at some point over the next few years she will deteriorate from scoliosis or risk her life and possibly her quality of life by repeated, complicated and risky surgeries.  I was almost able to hold back the lump in my throat until the dr left the room, but alas, I did not make it.  The tears came.

Please keep us in prayer over the next 6 months.  Pray for wise medical counsel, discernment, and peace of mind.  Pray that we are able to balance the medical research/decision making process with listening to God our Father, who has all of our days numbered.  Pray with us specifically to discern when to be proactive and when to let be.  God must have a pretty special guardian angel assigned to Julia.  He has carried her so far.  She has so much joy in her life.  She is His child before she is ours.   Being the firsthand witnesses to how much God loves this little girl, we have so much trust that His timing will be perfect for her.  





29 comments:

  1. My prayers are with you as parents, your family as a whole, your children as siblings and for sweet Avery and Julia's health. God be with all of you!
    Jane, a reader in OR

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  2. I'm so sorry you find yourself weighing such difficult decisions. I pray for God to give you wisdom in dealing with all this.

    -r.

    P.S.-- The growth rods-- will it really be for the rest of her life, or just until she reaches her adult height? (I'm a relatively new reader to this blog, so I'm sorry if she is not expected to live to adulthood and I missed that part.)

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    1. We are unsure of her life expectancy. Once they start the course of growth rods, I am not sure that they can switch to fusing. By 6 months, we will probably have more of these questions answered. We just don't know right now.

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  3. I wonder if some of the surgeries could be done with minimal invasive procedures (laparoscopic)
    I found this article:

    J Am Acad Orthop Surg. 2011 Dec;19(12):722-7.
    "Growth friendly" spine surgery: management options for the young child with scoliosis.
    Gomez JA, Lee JK, Kim PD, Roye DP, Vitale MG.

    SourceDepartment of Orthopedic Surgery, Columbia University Medical Center, New York, USA.

    Abstract
    The natural history of early onset scoliosis is dismal and associated with poor pulmonary function and increased mortality. Although limited in situ fusion may be appropriate for certain types of congenital scoliosis deformities, spinal deformity that affects young children often requires a "growth friendly" surgical approach that allows for curve control while maintaining growth of the spine and thorax. Growth-friendly surgical management of early onset scoliosis can follow a distraction-based (ie, growth rods, vertical expandable prosthetic titanium rib [Synthes, West Chester, PA]), guided-growth (ie, Luque trolley technique, Shilla technique), or compression-based (ie, tethers, staples) strategy.

    The Dr is in New York- wonder if you could get a second opinion

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    1. 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!

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  4. 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.

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  5. 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.

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  6. 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.
    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.
    We are praying for you all!
    We love you.

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    1. 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 : )

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  7. 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 xo

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  8. 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.

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  9. 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.

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  10. 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.

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  11. 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

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  12. any mention of the Mehta casting for scoliosis..... I work at a childrens hospital in atlanta and we are doing this now...

    http://www.scoliosis.org/forum/archive/index.php/t-5190.html

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  13. 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.

    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!

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    1. 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.

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  14. 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.
    Hopefully we'll be able to consult a doctor here in the US eventually. But I cannot say when. Hopefully not too late.

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    1. The doctor did not mince words....she said if we don't treat it she will die from pulmonary or cardiac problems.

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  16. 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.

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  17. 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!

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  18. 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?
    http://spinal-deformity-surgeon.com/#
    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.

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  19. 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.

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  20. 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.

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  21. 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.

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  22. 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 Mississippi

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  23. 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.

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