Ellie Update...May 31, 2011

This is what happens in the day when you REFUSE to sleep through the night!

We are grateful that the Lord recently provided for us to get a new seat for Ellie. She had outgrown her previous one, and it had been a while since she was able to sit in something that especially helped with her posture and special seating needs.


A few weeks ago, Ellie had another seizure (lasting about 20 minutes).  It had only been 3 months since her last one.  Previously, they had normally been spaced out about 5-7 months between each one, so we decided with her doctors to start her on daily anti-seizure medication.  So far, so good.  She has even slept through the night for about ONE WHOLE WEEK!!!!  (Not sure if it is related or not to the medication).  We are thrilled, but not getting our hopes up too high for regular good sleeping habits.

 Ellie attended the graduation ceremony of her brother Cody on Saturday night and seemed especially proud of his completion of the one-year Greek program at the Greek Bible College.

In the last several weeks, we have seen the following improvements in Ellie:  she seems to be reaching out more with her arms and hands for hugs, she kissed me several times at the beach during a baptism a few weeks ago (until now she would only kiss Vicki), she works hard to turn the light switch on and off, she is quicker on some days at choosing the video she wants to watch (by touching/grabbing/swatting it), and her physical therapist believes the Theratog she has been wearing is helping with stabilization, centering, and movement issues.


We have turned in what we believe is the very last of the papers from the U.S. government that can be produced to prove that we legally adopted Ellie and she legally belongs to us.  Unfortunately, they are not what the Greek government is asking for (because the Greek government requires something different than the U.S. government does in such situations).  So we are waiting to see what the Lord will do.  Ultimately, He is the one in control. 

If her papers are approved, and she finally (after 4 years) will receive a resident permit, we plan to send her to kindergarten in September at a Greek public school for special needs kids (which meets in the facilities of ELEPAP, a Greek non-profit that helps special needs kids).  ELEPAP will probably provide Ellie's therapy needs as well while she goes to school there. 
More info about ELEPAP at:  http://www.eurocharity.gr/en/member/331

If her papers are not approved...?  Only God knows.

Ellie's Birthday PARTY!

We CELEBRATED Ellie's party on Monday even though her actual birthday was on Sunday.  The Sanners, the Camis, and the Sirinides joined our family for an EXCELLENT meal of Vicki's grilled burgers and potato salad.  We played a game of China Trivia (I'll see if I can post it somewhere on this site), opened gifts and had excellent cake for dessert.

I think we may be getting some better photos later.

  

Ellie turns 5 today!

Ellie's FIFTH birthday is today (though we will celebrate with friends tomorrow)!  We can't believe that we have had Ellie for almost 4 years now!  Mother's Day 2007, when we first welcomed her to our family, does not seem that long ago.  I will post birthday pics after tomorrow.

Many thanks to Kevin and Beth Jordan-Krull for the new Theratog for Ellie!  Therapy she wears!

In and out of the "tunnel" at the Cami house

Another seizure today...

Ellie had a bad night and another seizure this morning.  She is sleeping it off.

When she's not sleeping or exercising, she's laughing...

Gait Trainer and Thumb

In the last couple of weeks two important things have happened:

1)  Ellie's gait trainer was adjusted for her to use!  I don't know how clearly you can see the photo, but her hands need to be strapped onto the bars, and she is wearing ankle-foot orthotics under her trousers.  We have to stand near and work with her at this point, but it won't be long before she will be scooting all over the place by herself.

2)  For the first time ever, she has started sucking her thumb!  It used to be that she couldn't even get her hand to her face, so this represents progress, though she needs to learn to stop poking herself in the eye with her index finger.  :)

Tomorrow, she has an appointment with a doctor who specializes in metabolic issues, and Wednesday she has an appointment with an orthopedic surgeon (because it appears that she is developing scoliosis).

New Year's Day 2011

Ellie is making some monumental efforts at crawling.  I hope to post video soon.

Lorie Delk is sending some games and exercises from the U.S. to help her with pre-verbal development!

Ellie's gait trainer arrived from the States the other day, thanks to the generous efforts of Kevin and Beth Jordan-Kroll but needs a few adjustments before she can use it.  I will post photos of her in it as soon as I can.  Meanwhile, here are a few pics between Christmas and New Year's Eve...

First Christmas ever without Kendra.  :(

                                            New clacker toy--my favorite!


















TOY STORY 3!!!!!!

Grateful for Met Needs

We are so very grateful for the various people and ways that God is using to help meet Ellie’s needs in these days.  He used a late tax refund from “Uncle Sam” to help pay for her new AFO’s (Ankle-Foot Orthotics).  He used a Greek couple with a disabled son who had outgrown his stander to provide this need for Ellie.  He used a couple in the States (Beth & Kevin Jordan-Kroll, who Scott only briefly met one time last June) to raise money for the purchase of a used gait trainer which is on its way to Greece right now (this same couple is currently try to raise funds for the purchase of a TheraTog for Ellie.  We also got word this week that the same woman who gave us Ellie’s current wheelchair (Melinda O'Neill) is offering us another one in a few months (which will be even more suitable for her) when her grandson (Rylan) gets a new one!

Ten Reasons to Give Thanks for Your Child With Special Needs

Today Ellie woke up very happy (after a very good night's sleep).  After her morning milk, she was non-stop happily "chattering", with LOTS OF GIDDY (slightly unclear) "I LOVE YOU" 's for about 15 minutes straight!

Ten Reasons to Give Thanks for Your Child With Special Needs

By Terri Mauro, About.com Guide

As if you need a reason! Parents of children with special needs know more than most that every child is a gift worthy of thanks, every one, the ones who thrive and the ones who strive, whether they become our legacy or we become theirs. But on those days when there doesn't seem much to be thankful for, or others are suggesting that your child must be just a burden, or well-meaning charities suggest giving thanks for healthy kids, check this list for a smile and a little inspiration.

1. You never have to worry about worrying over nothing.

Let other parents obsess over the frivolous and the shallow. Your child will make sure you always have something worthy to worry about.

2. Developmental delays = more years of hugs, kisses, and little-kid sweetness.

My 13-year-old still wants to sit in my lap, give me hugs, and tell me he loves me. What mom of a sullen teen doesn't secretly wish for the same?

3. Maybe someday, Ty Pennington will come build you a house.

Hey, Extreme Makeover: Home Edition loves families of children with special needs. Your little one may be your ticket to a lavish living space.  (But NOT in Greece).  :(

4. Any little milestone is a cause to throw a party.

Your child works hard for every step, sit-up and syllable, giving you lots to be excited about.

5. Every day is a learning experience.

Some days it's a pop quiz, some days it's a crash course, but life with your child is always an education, for sure.

6. You have the privilege of putting several doctors' children through college.

After paying for all those appointments, you may feel like a one-family scholarship foundation. Put your child's name on some letterhead and take pride.

7. You meet a better class of parent in waiting rooms and support groups.

Your child frees you from having to hang out with those snotty parents on the playground, and gives you entry into an exclusive club of people who are sensitive, sarcastic, and sure of their priorities.

8. You have an iron-clad escape excuse for any occasion.

You'd love to stay at that boring party, crowded event, endless church service, but, you know, your child just can't tolerate it. (And if sometimes it's you who can't tolerate it -- who's to know?)

9. Coming up with new strategies every day keeps your brain sharp.

They say doing crossword puzzles helps ward off Alzheimer's. Figuring out your child's schedules and treatments and lessons and rights and restrictions must easily provide twice the protection.

10. Your blessings will always be fully counted.

Other parents may take the gifts that their children bring for granted. Not you. Not ever.

First Fillings!

This week we took Ellie to a dentist we were referred to as someone who has experience with special needs kids.  Her first visit was just a cursory examination which determined she had two cavities that needed filling, and all her teeth needed cleaning.  (Ellie has a dental condition resulting from bad nutrition IN HER BIOLOGICAL MOTHER'S WOMB.  It was also very difficult to brush her teeth the first couple years we had her.  It is a little easier now).  An appointment was made for a few days later to do the fillings.

On that day, she was all happy and smiles at the beginning.  then a bit nervous when they wrapped her in a "straight-jacket" of sorts.  Then a tad more nervous when they started poking around and swabbing her mouth.  But when the drilling started, and they hit roots much sooner than expected, and it ended up being a bigger and longer (and more expensive) job than they expected, she went "crazy".  As it turned out, they only time for one filling, so now she needs to go back for another (and the cleaning).

Also, she went to the pediatrician last Monday and had two shots, didn't cry, and smiled and laughed a lot (for the first time).  On the same day, she got her new AFO's (ankle-foot-orthotics), went to speech therapy, occupational therapy, and physical therapy, and did GREAT for all those things.

She has also been sleeping well most of this week!  Overall, she's doing much better!

Sippy Cup Victory!!!!

Ellie worked a lot this summer on trying to get her sippy cup to her mouth.  Sometimes she would work up a good sweat for 30-45 minutes, trying and trying, but without success.

A few days ago she did it within 10 minutes of trying...TWICE!  We had lots of clapping and praising to celebrate!!  I got part of it on video and will hopefully post it here in the near future.

Here are a few more photos from  recent months...

New Doctor, New Seizure, New Resident Permit?

Our appointment with Ellie's new neurologist Dr. Skouteli was very encouraging.  Ellie seemed to like her as well.  She told us that Baclofen IS available in Greece (just under its marketing name, and in tablet form, but it is the same medication), so she is going to help us get Ellie back on that.  She also told us about a couple of good educational opportunities for Ellie that combine a variety of therapies (i.e., swimming therapy, horse therapy, physical and occupational and speech therapy, etc.) with schooling.  She is on the board of directors of one of the schools.  Though the school is full for this year, we are going to get Ellie on the waiting list for next year.  Additionally, Dr. Skouteli gave us some Melatonin to help Ellie sleep at night.  It is a hormone, naturally produced by our bodies, non-addictive, and able to be used with other medications.  ELLIE IS SLEEPING MUCH BETTER NOW!!!!!

Unfortunately, about 10 days after the doctor visit Ellie had another seizure.  This one lasted more than 30 minutes so it was the longest one yet, and we spent the day and night in the hospital.  Initially, the doctor wanted to start her on regular anti-seizure medication, but after reading the results of the EEG, and talking to us and our pediatrician we all decided to wait a bit on that.  The 3 days in which she has had seizure episodes up until now have each been 5 months apart, so we will not start her YET on maintenance medication. We got home from the hospital yesterday and she is still not quite back to her normal happy self yet.  After her previous seizures, it took her a few days to recover normalcy.

We have encountered many logistical and bureaucratic hurdles over the years to get Ellie a resident permit here.  It looks like we are close now to that happening. I will spare you all the long long long long long long long long long long lists of details and stories.  Please pray that we can get it soon.  In addition to preventing fines for her not having one, it may open some doors for financial assistance related to her CP.

That's enough for now.  Here are a few OLDER pics of Ellie...

September/October 2010

We've been back in Athens exactly one month today!  For Ellie, it has been a difficult readjustment.  It took her about 3 weeks to get over jet lag and then she got sick (still is).  Today was supposed to be her first physical and occupational therapy since returning to Greece, but now we will be canceling.

Additionally, we had to wean her off the baclofen because it is not available in oral form here as in the States, and this has made her very stiff again.  The slight gains we thought were resulting from the Hyperbaric Oxygen Therapy were actually, we see now, the results of the baclofen she was taking.

We have an appointment scheduled with a new neurologist on Oct. 11th.  Perhaps she will have something new to suggest.  Meanwhile, we pray, we wait on the Lord, and we do the best we can with what the Lord gives us.

September 23rd-27th, we went a couple hours away on a Team Retreat where (in spite of little sleep) we had a great time with our team, planning, praying, worshipping, playing, eating, etc. together.  Here are a few pics of Ellie from that weekend (by-the-way, while a couple of the pics look like she is not enjoying the time of "catch" with daddy, she really did!)...