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Sunday, May 27, 2007Isabelle has had a very busy few months since the last update. We have continued to make Isabelle's learning deficits one of our our biggest priorities, making every effort to try and determine a correct and accurate diagnosis. Unfortunately, we still do not have a definite answer. An answer may elude us for quite a while. But, we do know that Isabelle continues to make strides forward, some big strides and some small. In witnessing our sweet girl try and try again to do things that come easily and naturally to most children, my heart feels that it might explode with all the love I have for her. She might be delayed and might have some significant issues. But she is the bravest, strongest and most determined person I know. And I consider it an incredible honor and privilege to be the one she calls 'mama'.

On May 1st, Isabelle had tubes placed in her ears due to several flat tympanograms (which means she continually had fluid in her ears). The ENT commented that there was fluid behind both ears, but specifically the right. The fluid he removed from her right ear was the consistency of glue, he told us after her surgery was over. Yikes!! We left his office very hopeful that Isabelle would follow the steps of some other children we had heard about and just magically start speaking clearly. Well, it didn't happen. What did happen though, is that she has begun to speak more. To make more of an effort to speak and to communicate in general. She seems to have much more she wants to share, which is very welcomed by all of us (even though I have to remind myself of this regularly as she makes dozens of 'requests' a day)! An interesting result of her tubes was that she started gagging at certain sounds (the sound of ripping paper or foil), something she had never done before. This subsided quickly, but gave us an indication that she was now hearing things more clearly than she had been able to before. We have added a third speech therapy session weekly and are seeing some wonderful improvements due to the increase in therapy time. While Isabelle is still a woman of few words, she has begun to use more words regularly. Last week, the speech therapist reported her first 4 word sentence ("Look, it's a fan!") This is definitely not the norm, but it is so exciting to see her advancing, little by little. In early May she was retested by her speech therapist who has been working with her twice a week for six months. When we first had her evaluated she had no score, as she was unable to verbally communicate with the speech therapist at all except for 'mama' and a few animal noises (at 2 years 3 months). At her most recent testing, she scored 1 year 5 months on expressive language, 1 year 9 months on receptive language and 2 years 3 months on enunciation (at 2 years 10 months). So we do have some big accomplishments to celebrate! She is definitely making progress and slowly, slowly closing the gap between where she used to be and where she needs to be.

She is continuing with her once weekly OT visit, which the therapist thinks is sufficient, but if/when she gets another opening in her schedule, we may reconsider. Isabelle has, since the beginning of OT, been very compliant, always at least trying to do what the OT was asking. Well, for a few weeks recently, Isabelle had decided she didn't HAVE to do what the OT said, so she wasn't! Of course she had a big smile on her face the whole time, even though the OT and mama did NOT! But we chalked it up to a budding new sense of 'willfulness' which, in theory, could be a good thing. We were hoping she was just expressing her desire to do things her way. Deep down though, we both worried that this might be something more serious, and that Isabelle was becoming defiant, showing some more significant signs of PDD (pervasive developmental delay) and that we might need to try to start working a bit more seriously with Isabelle if this persisted. Thankfully, Isabelle had an awesome session with the OT last week, bringing both of us to the verge of tears when she answered the OTs questions, two in a row! The OT was holding up a red cylinder puzzle piece. She asked Isabelle "What color is this?" and Isabelle replied "Red". Then the OT said "What shape?" and Isabelle, while making a circle with her finger in the air, said, "Circle!" We both shrieked with delight and by the expression on Isabelle's face, she understood how proud we both were of her at that moment.

One of Isabelle's biggest problems has been having great difficulty answering questions well, she only began to say and shake her head "No" in the last 3 months. Now she is able to nod and say "Yes" and can sometimes answer questions correctly. Her vocabulary is growing rapidly and she finally seems to have a genuine interest in what words are. Hopefully she is learning that communicating what she wants actually GETS her what she wants (at least most of the time) so it is worth the effort to learn to speak! She has added "Daddy" to her list of words, finally! Of course, it helps that Chris is finally home. She also says Tori, Sophie and Velvet and sometimes Dalton. She does know each member of the family and can take something to each if we ask her. She, amazingly, has actually become a great little helper! We are trying to give her little tasks to complete around the house and she is doing a great job trying to do what we ask. It is so endearing to see her try so hard, words just can't express how in love with her we all are. Our precious girl

"I want to get DOWN!"

Isabelle loves her daddy

Post MRI: Not quite ready to wake up yet

Loving one of our many trips to the park

Beautiful sisters

One very surprising result of her new desire to 'express herself' is that she's ready to potty train! She has told me in no uncertain terms that she does not want to wear diapers ANY MORE! She pulled me up and out of my chair the other day to show me what she wanted and she said 'diaper' (her best effort at a word that was close) and took me over to Sophie and pointed to her panties. When I took her to her room to let her pick out a pair she wanted to wear, she was so excited and wanted to run all over the house, showing off her new 'big girl' look. Since then she has told me quite a few times that she needs to 'poo poo', which means 'pee pee', and so far has had only a few accidents. Even on the way to church today she told us she needed to go and, believe me, we got to that church FAST! She was evan able to hold it until we got there. Boy, the things that can make a mama proud ;) Since I have always started my kids on the potty when they turn three, Isabelle is showing that she is indeed ahead of schedule, in her own wonderful way :)

In late April we made a trip to Nashville to visit a pediatric neurologist. He did a complete physical evaluation and listened as I gave I detailed description of Isabelle's history, strengths and weaknesses. He answered all of our questions and he commented that his biggest issue with her behavior was her lack of good, consistent eye contact. He labeled her as having 'autistic features' but felt that a diagnosis of autism was very premature and potentially incorrect, especially considering her first 11 months of life. He stressed that she might be just very delayed due to her time in the orphanage, and might surprise us all and catch up quickly once she got a bit older. We left his office feeling encouraged and hopeful that our girl was simply in need of good therapy, lots of love and attention, and simply, time. We were shocked when we received a report in the mail from the neurologist, detailing our visit, and diagnosing Isabelle with 'static encephalopathy'. Static means "Not progressing, a fixed condition" and encephalopathy means "Degeneration of brain function, caused by any of various acquired disorders". More succinctly it means, brain damage. I just sat at my desk and cried. When I questioned the neurologist about his diagnosis, he stated that it is a term he uses for a child with a 'disability', but no matter what he said, the words had been spoken, words I had never imagined I'd hear. Brain damage. It hurt too much to bear. For some reason I had, optimistically, never considered this to be a possibility, much like I had been caught off guard by the word 'autism'. I couldn't stop the tears, the sadness, the pain of hearing those words. It overwhelmed me and left me feeling heartbroken, angry and alone. A feeling I had not had since I had accepted Jesus Christ as my savior seven years before. It felt like God had abandoned us, Isabelle and I, and that He had left us to fend for ourselves in stormy and unchartered waters. I bristled at the thought of praying or even speaking to God. I went on 'autopilot' for days, just trying to get through until Chris got home. I quit wearing makeup because I was always crying, and many times the sadness would grip me without warning. Isabelle's therapist thought at first that I had allergies because my eyes were so red and swollen! Thankfully both Isabelle's therapists were there to encourage and support me while we endured this very difficult time. Chris never wavered but his words of faith only served to make me more upset. But, slowly I began to see that God had NOT abandoned us. That He was there the whole time, holding me while I cried. Listening as I spoke bitter and angry words about Him, Isabelle's condition and worried about her future. I realized that had God abandoned Isabelle, she would still be wasting away in a crib in China. Maybe she would have already succumbed to her heart condition and passed away. But Isabelle is thriving. Growing. Learning. Loved. There is no doubt in my mind that God's hand is at work daily in all of our lives. Going through this crisis of faith has instilled in me a deep knowledge of how blessed I am to have the best, most loving, most compassionate Father in the universe :)

Since her neurology visit Isabelle has completed almost all of the tests that the doctor ordered. She has endured lots of bloodwork (to screen for genetic and chromosome abnormalities, Fragile X etc) and even produced enough of a 'sample' on her own for a urinalysis ;) Thankfully all of her labs came back NORMAL! Praise God! Her MRI was conducted on May 22 at Scottish Rite in Atlanta. She was such a brave girl. Due to her age she did need to be sedated. The anesthesiologist started with a dose of 30ml of propofol (a sedative) and the drip was set at 8. He said that was enough to put most kids out. Well, our girl fell asleep, but refused to stop wiggling, even in her sleep! Before she finally stopped moving he had given her 65ml and upped her drip to 16! He commented that she must be a "very strong willed little girl"... if he only knew!! The MRI only took about 30 minutes and thankfully my mom was able to come over to the hospital to help out with Sophie while Chris and I were in the room with Isabelle. When she came out she was totally zonked, we finally had to wake her up so we could go home. Two days later the neurologist called with wonderful news. Everything on her MRI looked normal. I am really beginning to think the word 'normal' is a highly underrated word!! We are now waiting on her final test, an EEG, that is scheduled for July. The neurologist thinks there is a chance that Isabelle is having 'mini seizures' that are undetectable, but that might cause a significant verbal delay, similar to what Isabelle is experiencing. We will have to wait and see, but we are confident that no matter what the results, that God has chosen us to parent her, to love and care for her, and that He thinks we are up to the job! So we will continue on this new journey that has been set before us, relying on Him all the way. And remembering all that He has done for us all, specifically bringing us the amazing and awesome joy that is our special, special girl.

I am Yours regardless of
The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain
So I pray
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

Bring The Rain ~ Mercy Me

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