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December 2009
On December 1st Christos had rodding surgery to replace his bent femur rod.
The first set of rods were inserted in his femurs four years ago (see
2005) by the same doctor who did this surgery to Christos,
Dr. Anastasios Kanellopoulos, and really
helped Christos to be able to walk independent and get stronger.
In April 2007, though after a fracture at his right femur, the rod was bent.
The next two years and after a series of mostly femur fractures, both rods
were bent and not expanding anymore. Moreover there is a leg difference about 8 mm caused by the femur bowing
which along with his femurs bowing did his walking problematic and tiresome.
Thus Dr. Kanellopoulos recommended to replace both his rods.
In the first phase he replaced the right rod. There were several difficulties
during the surgery due to the large deformation of the bone but
the result was very satisfactory.
Christos, a few days after surgery is very good. What
impresses me is his maturity and calmness facing all this situation and he was very curious to know as much as
possible
details. He even asked me if he could have a look to the rod they removed. But I had never thought of that but I could
ask the surgeon so at the following surgery to replace his left surgery, hopefully next month.
November 2009
At first grade this year Christos loves school!!
He loves his teacher, Mrs. Christina, because she teach him how to read and write and soon he will be able to read by himself as he says.
Unfortunately a fracture and replacement surgery of the legs of starch which has been postponed for some time since mid November, will keep away from the classroom with their peers.
August 2009 - Trip to Ioannina
In August we had a trip to the city of Ioannina.
August 2009
On August 16, 2009 Christos had his 6th birthday!
July 2009
Mid July Christos had his regular pamidronate infusion at our local hospital.
It is a two day infusion as there is a restriction on the hourly dose of medicine that can be given.
He gets half the dose during a three-hour infusion in the afternoon and continues the next morning with the rest dose.
Christos is one of the most favourite boy in the pediatric clinic and he feels very comfortable there.
Every time after a pamidronate infusion Christos is very active and sometimes becomes rekless so there is always ar risk
of fracture. For this reason we must be very careful and often have
to remind him that he should watch his steps and not run. But just hours after we got back home without any apparent reason,
Christos fell while running out of his room. He fell on his left side and i took him gently on his bed and as soon as
I calmed him down he told me he was hurting pointing somewhere in the midline of hisleft femur.
With just painkiller and a few movies soon he was calm and confortable. We did not feel like to have an x-ray as he said his femur was hurting and he did not weightbare at all
so it is a fracture for sure probably not so serious.
Two weeks later and has begun to weightbare at his left foot but it is too
early to walk. He must get strong enough to walk on his own. The surgery to replace his femur rods is postponed till autumn and we all have to be very careful
to avoid another fracture if possible.
Mid July 2009
Christos wanted so much to travel with boat so we traveled for the weekend to Thasos island. Both he and his brother, Lefteris, were thrilled especially playing on the seaside.
July 2009
Kindergarten is over and now it is a sweet memory for all of us although it was a very tough year for all of us.
On the one hand the cold and the virus infections - every other week
at least one at home had a fever or cough or whatever. Christos even had scarlet fever shortly before closing schools.
On the other hand fractures and especially the last one, and now itis critical to replace the rods inserted at his femurs as they are both bend and the
difference between legs is more obvious now.
Despite all these it was a great experience for Christo since he got part of a group of children and Παρά τις ιώσεις και τα κατάγματα όμως ήταν μια φοβερή εμπειρία για τον Χρήστο
μιας και έγινε μέρος μιας ομάδας, κάτι που δεν του είχε δοθεί η ευκαιρία
μέχρι τώρα και συναναστράφηκε με άλλα παιδιά, πολύ δειλά στην αρχή αλλά
σιγά σιγά ανοίχτηκε και έκανε φίλους, έμαθε να λειτουργεί μέσα στην τάξη,
να έχει υπομονή, να συνεργάζεται και να παίρνει μέρος στις δραστηριότητες.
Σε όλα αυτά βοήθησαν πολύ οι δασκάλες του, τόσο η δασκάλα
της τάξης όσο και οι δασκάλες σε παράλληλη στήριξη*Ορίστηκε
στην αρχή της χρονιάς μια δασκάλα παράλληλης στήριξης η οποία θα κάλυπτε
συγχρόνως τις ανάγκες τόσο του Χρήστου όσο και ενός άλλου παιδιού στην ίδια
τάξη το οποίο είχε εγκεφαλική παράλυση. Και ενώ η χρονιά πήγαινε ομαλά,
κάποια στιγμή οι γονείς του άλλου παιδιού ανόητα και παράλογα ζήτησαν από
τη διεύθυνση η δασκάλα της παράλληλης στήριξης για ένα μέρος της ημέρας
να ασχολείται αποκλειστικά με το παιδί τους βοηθώντας επικουρικά σε ασκήσεις
ενδυνάμωσής του, πράγμα όμως που έθετε σε μεγάλο κίνδυνο τον ίδιο τον Χρήστο
αφού απαραίτητη προϋπόθεση για την ασφάλειά του ήταν η συνεχής επίβλεψη
από καποιον ενήλικα καθ'όλη την διάρκεια της σχολικής ημέρας. Το όλο θέμα
αντιμετωπίστηκε με τη φιλότιμη προσπάθεια των δασκάλων και από κάποιο σημείο
και μετά με την παρουσία και τρίτης δασκάλας μέσα στην τάξη.
Η όλη εμπειρία αποδείχτηκε εξαιρετικά χρήσιμη. Παρότι στην προσπάθεια επίλυσης του θέματος ακούσαμε και αχαρακτήριστες
προτάσεις, όπως το να είναι ο Χρήστος με ζώνη δεμένος σε καρεκλάκι με ρόδες(!), εντούτοις επικράτησε η λογική και σίγουρα και η
καθοδήγηση των αρμόδιων υπηρεσιών ήταν τέτοια ώστε να βρεθεί η βέλτιστη λύση. Σίγουρα δε θα περίμενα ποτέ να έρθω αντιμέτωπη με οποιοδήποτε γονέα,
και ειδικά γονέα παιδιού με ιδιαίτερες ανάγκες, που φτάνει να κραυγάζει ότι έχει “φιλήσει” κατουρημένες ποδιές και ότι ξέρει τον Ευριπίδη ή τον όποιον άλλο
υπουργό και αυτό θα έπρεπε να λέει κάτι σε εμάς. Δεν χρειάζεται να ξέρω κάποιον υπουργό ή να χάσω την αξιοπρέπεια μου για να έχει το παιδί μου αυτά
που δικαιούται. .
Και τώρα θα έπρεπε κανονικά απλά να απολαύσουμε το καλοκαίρι μας. Αλλά εκκρεμεί
το χειρουργείο του Χρήστου που για κάποιο λόγο σχετικά με την εισαγωγή των
υλικών έχει “κολλήσει”*Τελικά
μήπως είναι απαραίτητο να ξέρεις κάποιον υπουργό;. Έτσι απλά θα
ξεκλέβουμε λίγο χρόνο για θάλλασσα μέχρι να οριστεί η ημερομηνία.
Mid May 2009
After a month since his last fracture Christos walks without help. What else? Oh yes, he has scarlet fever but fortunately with mild symptoms. But he misses school..
May 2009
It is already three weeks since Christos right femur fracture. Fracture happened Good Thursday. It was the first time Christos faced his fracture with real anger and I had to give for at least two days painkillers in order to be confortable
Τις πρώτες δέκα μέρες ήταν αρκετά κακοδιάθετος και λες και, δεν έφτανε μόνο το κάταγμα, έκανε και πυρετό για κανά δυο μέρες λόγω ίωσης που τον
κατέβαλε ακόμη περισσότερο. Από την άλλη ο βροχερός καιρός κατά τη δεύτερη βδομάδα των διακοπών του Πάσχα σίγουρα δε βοήθησε μιας και μας έκλεισε μέσα στο σπίτι.
Από την στιγμή όμως που άνοιξαν τα σχολεία και επέστρεψε ο Χρήστος στην καθημερινή του ρουτίνα τα πράγματα άλλαξαν θεαματικά! Και παρόλο που την πρώτη μέρα στο σχολείο μετά
τις διακοπές ο Χρήστος αρνιόταν να κατεβεί από το καρότσι του, την επομένη όχι μόνο ήθελε να παίξει στη παρέα αλλά μετείχε κανονικά σε όλες τις δραστηριότητες στο μάθημα
και γυρνούσε πίσω σπίτι χαρούμενος. Και ήδη πριν κλείσουν τρεις εβδομάδες από το κάταγμα, ο Χρήστος μπορεί να κινείται αρκετά άνετα και ακόμη και να περπατάει με προσοχή και κρατώντας
τον από τα χέρια.
Είμαστε ακόμη σε αναμονή να οριστεί η ημερομηνία για το χειρουργείο αντικατάστασης των ενδομυελικών ήλων στους μηρούς του...
April 2009
Happy Easter!!
The photo is from a little celebration kids had at the kindergarten on March 25th. March 25th here in Greece is a federal day, a commeration of the revolution in 1821
declaring our liberation from the Ottoman Empire and the beginning the Greek War of Independence.
Since Christmas Christos got really strong. Starting pt lessons really helped. In Christos case is really important to have his rods being replaced
while Christos is in the best physical condition he can.
That why is was a really bad luck his right femur fracture on Great Tuesday when he slipped while running in the house.
His dad gave him his usual painkillers and soon Christos was feeling better. Just for phycological reasons we wrapped his femur with an ace bandage and he stayed
in bed watching movies and being careful with his leg.We will wait and see how serious things are.
March 2009
The carnival this year Christos and his classmates made handmade masks and hats with their teachers help and they had a party.
At the party he dressed - what else? - dinosaur!! I found the pattern at the internet. Next year's carnival he wants to be a knight -
thankfully it will be much easier to find a knight's costume - since he loved swords.
On Clean Monday three-day vacationswe went to Athens.
The visit at the Attica Zoo will be unforgetable!! He was thrilled and for more that two hours he was running up and down
visit all the animals and he wanted me to read all the info for every animal at the park!! Next day at the school he descrided really excited his experience to his classmates!!
Καθαρά Δευτέρα το ταξίδι της επιστροφής. Σταματήσαμε για λίγο στην Στυλίδα όπου υπήρχε φαγητό, χορός και τραγούδι αν και τον Χρήστο τον ενδιέφεραν μόνο οι χαρταετοί στον ουρανό.
Christos was given birth on 16 August 2003.
Christos has a rare bone disease called osteogenesis imperfecta type IV.
From nine months old he has begun treatment with biphosphonates
(pamidronate) and in the dues 2005 it was he had both his
femurs rodded.
As for his growth it almost regularly follows the 3rd centesimal place in
growth curves so much for the weight what the height..
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