Long and Winding Road

Most of you know our story of how we adopted Haven, but for those of you who are new readers of my blog, you can read it here. It will give you an understanding of her background.


What an amazing road this is turning out to be--one with many twists and turns. If ever I thought (and I did) that diagnosing Haven would be relatively simple, how wrong I was! Having been blessed with four children who hardly ever even visit a doctor, I am the first to admit that all this medical stuff is so completely over my head. Is there a dummy's guide to all things medical???


Yesterday we spent a couple of hours with Haven's therapists, working toward a diagnosis. You may remember that for the last few weeks she has been assessed by different professionals. Haven and I got to spend some time with a children's doctor who is a specialist in the area of children with developmental delays. Wow! Talk about insightful.


Dr S. knew exactly what he was looking for when he examined a seriously traumatized Haven. Oh how she hates anything that even resembles a doctor. The first thing he looked at was the palm of her hand. This is a picture of what her palm looks like...the Simian crease.





We had never noticed it before, but she only has one crease on her palm. Most of us have three. The doctor took one look at it and said he wanted her chromosomes tested for Trisomy 21--also known as Down Syndrome. Huh? She does not look like a DS child. But, some of you may know there is a form of DS called Mosaic Down Syndrome. The children tend to be higher functioning than the regular DS kiddos. And, they often do not have the characteristic facial features that are common with regular DS.


Why had that never even been on the radar as a possible cause of Haven's delays? I have no idea. This is the first doctor who has ever even looked at Haven's palm.


In a nutshell, here are some of the other the things we are looking at--

~~ At this stage it is impossible to come up with any 'official' diagnosis. There are still too many unknowns.

~~ She is going to have an MRI to determine what her brain actually looks like.

~~ She will have an EEG to determine if there is any seizure activity.

~~ She needs to have a CAT scan done.

~~ A swallow study will determine if she is able to swallow properly. She takes an hour to eat most meals, and breaks her food into the tiniest morsels.

~~ Chromosome testing to test for Down Syndrome.

~~ Genetic testing.

~~ Heaps and heaps of blood work.

~~ A CPK (I forget what that is called) test to test muscle disease. She is not even on the growth chart. She is tiny and very short for her age.

~~ Testing to determine her true age. (She was abandoned as a baby and her birth date is made up)

~~ Thyroid testing.

~~ She needs aggressive speech and occupational therapy.

~~ A hearing test.

~~ There is talk of giving her growth hormones. (Not too sure how I feel about THAT one. We'll see.)


Ummm, I think that is most of it. I may as well just move our beds into the doctors office and make that home for the next few months :)


Not one of the doctors even consider Autism as a possibility. How in the world did China ever come up with that? (From the first time we ever saw Haven's photo we knew in our hearts that it was an incorrect diagnosis, possibly just a way for the previous family to get out of an already finalized adoption). RAD is not really an option either.


The main concern right now is Haven's development. Just as we are, they are concerned about why she makes absolutely no attempt at speaking, and is extremely inactive in general. Every doctor was deeply concerned at just how delayed she actually is. Her motor development is almost at a 4 year old level, and everything else is at a 1 year old level. She is so far behind.


The question is--is there permanent damage in her brain that has caused all this delay, or is it something that can be overcome with medication and therapy. The only way for us to know the answer to that is to do ALL the testing. An MRI should answer a lot about what is happening in her brain.


Here's something interesting we learned. The first three years of a child's life are crucial in their development. If a child has not been loved on, cuddled, paid attention to etc, a part of their brain actually shuts down and does not develop. That part of the brain that is lost can never be regained. It is gone. The child will grow up with less brain function than they would have had if they had been nurtured. My heart breaks--how many thousands and thousands of children in third world country orphanages are left with permanent brain damage due to this kind of neglect?


Some may wonder why we would ever go to all this trouble to get Haven diagnosed. Well, we need to know. We need to know if she needs medication, what kind of therapy is going to help her, what kind of learning environment is going to be best for her to learn and grow. We need to understand where she is at mentally, if there is more permanent damage in her brain, knowing about it will greatly assist us in parenting her. It will assist us in having realistic expectations of her as she grows. Although we hate 'labeling' children and would never put Haven in any 'box', there are some things that we just need to understand, for her sake, and for ours.


So, forward we go! As of today we are setting up appointments and taking all the necessary steps to find out what is going on in our sweet daughter. We are so thankful that God already knows. We are so thankful He already has His hand on the outcome of all this. I am so humbled and so blessed that He trusts us with His child. As so many of you commented on my earlier post, Haven is His, just on loan to us. I pray that we would hear His voice as we parent her, that we would know every step we need to take.


We are calling on the HEALER to breathe LIFE into all those places in Haven's brain that need a touch from Him. Can He do it? Absolutely! I believe it with all my heart.


(If you got to the end of reading all this--I am seriously impressed :) )