Christmas Sunshine!

I know that 3 of these photos are almost the same, but I just could not choose the best one so I added them all!

Movement and Light

Last month our dear friend Cyndi Karnoscak visited us and took some pics of Ellie. In some ways they captured the "essence of Ellie"--especially in the areas of her constant movement and the light she radiates with her smile.

November 2008

Took Ellie to the hospital for some tests on Wednesday to see if it can be determined why her head is not growing as it should be. We are still waiting for the results, but thought I would post a few new pics until then.

Portaits

When each of our our children reached the age of 2 or 3, Scott's dad (Bill McCracken) did a charcoal portrait of each of them. Last month, we were all pleased that Ellie joined the ranks!

Progress Update October 2008

Cuddling and Kissing with Mommy

LAZY LUNCH (she fell asleep while eating)

ELECTRIFYING EXERCISES

In the last week, Ellie has been to the neurologist, the ophthamologist, the pediatrician, twice to the physical therapist and twice to the occupational therapist. In addition to the twice daily therapy sessions at home, time in her "standing frame", and the spontaneous activity between holding her and playing with her, she has had a full week.

The good news is that although her improvement has been very limited and very incremental, it does represent progression (not stagnation or digression). 

Here are a few examples...

1. The neurologist was very pleased with her improvement in head control, muscle tone, and interaction with the doctor (she didn't freak out and cry like the previous visits).

2. The eye doctor had said back in February that she would need glasses and we should come back in the fall when Ellie would hopefully have better head control. However, she informed us this time that Ellie's stigmatisms had improved quite a bit and we can defer the idea of glasses for at least another year.

Ellie also did really well at the eye doctor (not freaking out and crying like the last visit). She didn't even cry after they put in the eye drops to dilate her pupils.

3. The physical therapists say we still have a long road to travel but they are pleased with the small (but important and foundational) improvements they are noticing.

4. The pediatrician says she is developing mostly well but she is a little concerned about her head not growing much. She will consult more with the neurologist about that. Unfortunately, Ellie still gets upset when we go there (likely due to the shots she gets each time). :) But we have a GREAT pediatrician (Dr. Arlene Chung--a Korean American, married to a Greek) with whom we are well pleased!

Thank you so much for your continued interest and prayers on her behalf!

"BEAUTY"

Smiling Beauty in the hotel room with William where we had our family vacation.














Sleeping Beauty (she was taken from her bed to get ready to go to physical therapy...she never woke up on her own even after getting her hair washed and her diaper/clothes changed, and it took me and the therapist 10 minutes of trying hard to wake her before she finally awoke).
















Bathing Beauty at our vacation hotel

More Pics!

FAQ's

Reading time for the "kids"

Exercise by the "sleep-learning" method





Q: Has Ellie been specifically diagnosed?
A: As mentioned earlier in this blog, she was officially diagnosed by her neurologist last November with Cerebral Palsy.

Q: What is the doctor's prognosis for Ellie?
A: There remains no definitive prognosis other than the strong recommendation that we continue to pursue physical therapy, with the hope that improvement will result

Q: How is it going with physical therapy?
A: Though Ellie cried hard the first few months, she is much more used to her sessions now. Her occupational therapist (play therapy for fine motor skills) is Miss Eftihia and Ellie has two sessions a week with her. She has two physical therapists (Mr. Dimitris and Mr. Nikos) and she sees each of them once per week. They are all positive about her very slow progress, but it is progress. They are hopeful for the future without making any specific promises or guarantees.

I would also like to mention that we are very pleased with the therapists. They are very skilled, patient, caring, and knowledgeable.

Q: How old is Ellie?
A: 28 months as of August 10th (her birth date is April 10, 2006)

Q: What can Ellie do by herself?
A: She can lie on the floor (or in her bed), she can smile in a way that lights up the house, she can laugh in a way that can lift the deepest depression, she can radiate cuteness like crazy, she can sleep, and she make dirty diapers. She can also eat just about anything these days if given to her in small pieces. She has improving (though not complete) head control. She can open her hands more often than she used to, and hold on to some things. She will usually lower her head when you tell her to (usually, this is necessary when holding a cup of water for her). RARELY, she has turned over by herself.

Q: What can Ellie do with assistance?
A: She can drink water from a cup if you hold it patiently and carefully for her. With a lot of coaching from others and quite a bit of effort on her part she can knock over a pile of blocks set in front of her. Sometimes when coached she will turn the page of a "board book". She will show you her tongue when you ask her to. She can sit in a special chair if she is strapped in well.

Q: Has she spoken in words yet?
A: Nothing intelligible, though she is becoming more "verbal" with baby talk and cooing.

Q: How has she bonded with the family?
A: Excellently! She also does OK with others if she has had time to get to know them. She still does not do well at all with strangers or people she has not spent that much time with.

Summer Pics

Sisters

Aunt Donna and Aunt Maria

Ellie and 8-month-old Athens RefMin Teamie Sofia Sanner

Summer Videos 2008

First Time At The Beach!




Standing Queen!




Bubbly About Bubbles!




More Bubbles...




...and even more bubbles







Fun with Mommy!

Kyle, Mommy, Kendra, Sleep, and Water

Cute feet, exercising with daddy, and a jeepney ride in Manila!

New video of Ellie

Here are a few new video clips of Ellie. Also note in the column on the left side of this page a new link to a video of us reading poems we wrote to honor Ellie's first year with us (Gotcha Day--1st year anniversary).

2 New Video Clips!

2 new video clips have been added. They are both of her watching the "fairy godmother song" in Shrek 2. Enjoy!

Ellie's 2nd Birthday!!

Thursday, April 10th, Ellie turned 2 years old!!!! We celebrated with a small party that our dear friends Ilir and Kate attended. Vicki made a wonderful dinner of beefteki, rice, broccoli casserole, garlic-cheese bread, salad (Kate made the salad), and chocolate truffle cheesecake with butterscotch topping (YUMMMMMMY). Ellie had oatmeal and baby food (meat & veggies).

Ellie continues to bring us all much joy and love!! She is God's gracious gift to us! She continues to make slow, incremental, and certain physical progress. Beginning next month, she will add another session each week for occupational therapy (which will make 2 sessions a week for occupational therapy and 2 sessions a week for physical therapy OUTSIDE the home). We do exercises at home about 90-120 minutes of scheduled focused time each day, and then other spontaneous time while holding her or playing with her.

3 Brief Comments...

3 noteworthy updates about Ellie in the last week or so...

1. Her sleeping habits have become really goofed! She'll be dead tired and start falling asleep in your arms or while eating, but as soon as you put her in her bed, she jerks awake and seems quite alert (sometimes happy, sometimes not). She can lie there for hours--cooing, baby talking, laughing, crying, screaming--NOT sleeping. If you leave her alone, she gets more tired working herself into a lather. If you pick her up and try to rock her to sleep or out her pacifier back in her mouth, she might start to fall asleep but as soon as you put her in bed (even after she falls into a deep snoring sleep) she wakes up. This is all daytime sleeping.

Nights are varied. Some are good and some are not.

2. The other day while we were playing/exercising with Ellie on the floor, our dog Popcorn came over and laid beside her (as she frequently does); but for the first time ever, Ellie reached her arm out to the dog and began moving her hand back and forth over Popcorn's body!

3. While in the supermarket this week, we put her in the little "seat" of the shopping cart. Previously, she would never sit still enough or balanced enough to keep her in there more than a few seconds. This time we put her little hands on the things in front of her, held them down with our hands over hers, and she stayed seated and balanced the WHOLE TIME! This may seem a small thing to some, but it really is an encouraging sign of progress!

Ellie's First Emergency Room Trip Was A Gas!

At various times on Saturday Ellie was trying to have a bowel movement, with no success. We put her to bed about 9:30 PM. At 11 PM she began screaming and crying very loudly. She had filled her diapers with a very large and solid deposit, and she had vomited all over her bed and herself. After bathing her, changing the sheets, and rocking her to sleep, we put her back to bed. At about 1:15 AM, she began crying again (mostly in her sleep) but she seemed to be in much pain, especially if you touched her in the stomach area. We had never seen her like this (nor any of our other kids--except for William when he was 8 and had appendicitis), so we were a bit concerned!


After almost an hour of this, we called our pediatrician who finally suggested it would be best to take her to the hospital to make sure nothing serious was wrong.


As we got ready to go to the hospital she began to quiet down. When we put her in the car she woke up and seemed wide awake and quite content all the way there. When we arrived and waited for the doctor, she passed a bit of gas and seemed quite happy. As the doctor began to touch her in examination, she cried quite hard (which is quite normal during doctor visits). Vicki started making her laugh so the doctor could examine her, the doctor gave her a small enema, she immediately deposited a large load, and we were able to leave.


We got home around 4 AM and Ellie got back to sleep around 45 minutes later.


All things considered, we are very grateful that it was nothing more serious, and she has been just fine the last couple of days.

This Month...

February has been an encouraging month in a number of ways, including:

* One of the exercises Ellie needs to do at home requires a 4,000 Euro piece of equipment!! The physical therapy center we take Ellie to loaned us one, without charge!!





















* Both physical therapists who work with Ellie each week are encouraged by her progress in the last 3 months (she even sat by herself for about 10 or 15 seconds this week)!

* Ellie started occupational therapy this month (once a week)

* We saw the neurologist again Wednesday (the first time since November) and she immediately noticed improvement in Ellie's condition. Although she is officially diagnosing her condition as Cerebral Palsy, she emphasized that because it didn't show up on the M.R.I., it is probably a mild case and with good regular physical therapy there is hope (though not a guarantee) of significant improvement.

* We saw the ophthalmologist on Friday and she said that although she will need glasses in about 6 months, her refractive error has become more balanced in both eyes. This is good because she was starting to develop a lazy eye when we first had her, but this condition has improved and will be unlikely now. She would have given Ellie glasses right away but she wants to wait until she develops more head control. Glasses will help her eyes develop much more normally.