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:


.....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.