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!)...

Miscellaneous Summer 2010

We met so many wonderful people during the time of Ellie's treatments.  At the top of the list were Melinda and Rylan O'Neill.  Melinda is Rylan's grandmother and caregiver, and she generously provided for Ellie a new (slightly used) wheelchair and a new bath chair!

                                                          

 

Rylan and Ellie

We went to a water park in Gulf Shores one day while in Alabama.  Ellie loved it!

In the backyard pool at Gram and Grandad's in Mobile, Alabama

                                         Ellie and Sophee at the Powells' house

Summer 2010

Ellie and the rest of the family enjoyed a great 5 weeks together at my parents' house in Mobile, AL.  We are now based in Eugene, Oregon for the next 6 weeks.  This week we are the missionaries of the week for the Elmira Church of Christ Vacation Bible School.  We will speak at some churches and spend time with some friends and supporters in OR, spend some time with family and refugee friends in WA, visit a supporting church in CA, and go on a camping trip at Lake Lomolo in southern OR.

Ellie is doing fine and adjusting well to life here. In the last 2 or 3 weeks she is taking the initiative to TRY crawling.  She bunches her butt up in the air and tenses her arms but hasn't been successful yet.  However, it is progress that she WANTS to and is TRYING.  We work on crawling pattern as part of our daily exercise routines so we are sure she will get it sooner or later.

My dad bought a small pool to put in their backyard while we were there.  Unfortunately, we didn't have time to use it much but the few times we did, Ellie really loved it.  The last 2 or 3 times, she floated and moved around the pool (on her back with a life-vest on) all by herself for up to 30 minutes, unassisted.  That's progress!

We have been trying to get her scheduled for some neurological testing while in OR, but so far have run into a bunch of hurdles.

Disappointment, Gratitude, Joy, and Hope

Ellie's HBOT treatments ended last week with only 3 more to go when Ellie had a seizure while in the chamber.  It lasted for 14 minutes and we spent the afternoon in the hospital running tests, after which they released her.

For all who want to know how effective the treatments have been, to be honest we are DISAPPOINTED (but not discouraged).    We knew at the beginning that it helps some and not others.  We were never given any false guarantees or false hopes but we knew we had to try.  We have met several people who have received great benefit from it and we sincerely rejoice with them.   Dr. Harch was honest, compassionate, sensitive, wise, and truly cared about Ellie and me.  He said he can recall only two others in all the years of doing this that were as resistant to the therapy as Ellie.  He also said that residual effects CAN happen up to two months after the treatments.

In spite of our disappointment, we are also VERY GRATEFUL.  We are grateful for all the loving and caring and generous friends who helped make this attempt possible.  Prayers, financial sacrifices, encouragement, transportation, etc,. etc., were POURED OUT over us like water to a thirsty man.  We are grateful that God has graciously sustained our family during this time of separation, providing for us in times of temptation, providing financially, providing emotionally, etc.  And we continue to be grateful for Ellie herself and the precious gift from God she is to our family (and all who know her).  We are grateful to our other children for their extra maturity, responsibility, and sensitivity during these months.  I am so grateful to my parents, and especially my mother, who took us in on the weekends and let me get some sleep.

We are also experiencing much JOY, primarily in the assurance that God remains on His throne, in control of our lives and the affairs of the universe (and beyond).  But we are also rejoicing in the new experiences of God's person and provision, in the new friendships He has given us in these months, in the things we have learned about ourselves (not always pleasant things but never-the-less necessary things), and in the fact that this chapter is closing and another is opening (beginning with the reunification of the family on June 7th as Vicki and the boys join us at my parents' house in Mobile, AL to begin a summer furlough).

And finally, nothing can take away the HOPE we have in a God and Savior who assure us that the struggles of the present can be redeemed in ways that bring benefit to us and glory to Him both now and in the future.

Ellie on the swing at City Park