Celebrating the Blessings!!!

Saturday was Thomas' Birthday party.  We had a lot of family and close friends come and celebrate with us! It was wonderful.  We are so blessed to have so many amazing people surrounding us and this special little boy.

The best was Thomas sitting there for what seemed like an eternity to blow that candle out.  We were very patient holding off the other kids and telling him to blow.  As you can tell from his face, he knew what he was doing the whole time.  He finally blew the candle out and the applause was loud and boisterous!!  It was hilarious!

We have still been working with out PT, ST and OT, but other than that we are kind of on auto pilot for now. We also got the report from the geneticists with the diagnosis of Wildervanck Syndrome, also known as Cervico-Oculo-Acoustic Syndrome.  So, we can finally move forward with our Deeming Waiver application for Medicaid coverage for Thomas.  That would be such a relief for us if he could be covered this way.  We maxed out the insurance by the first week in March and we certainly cannot afford to do that every year, but see no alternative at this time.

Here is a list of Thomas' current diagnosis:

# DUANE'S SYNDROME (378.71):

# LACK OF COORDINATION (781.3):

# CONGENITAL ANOMALY OF SPINE UNSPECIFIED (756.10):

# FAILURE TO THRIVE (783.41):

# MULTIPLE CONGENITAL ANOMALIES SO DESCRIBED (759.7):

# KLIPPEL‐FEIL SYNDROME (756.16):

# UNDESCENDED TESTIS (752.51):

# HEARING LOSS (389):
# SPEECH AND LANGUAGE DEFICIT UNSPECIFIED (438.10):

# HEART MURMUR (785.2):

I despise talking about money and finances.  Funny being that I have extensive experience in financial planning, but I don't like talking about our personal financed.  Our online fundraiser came to an end on Thomas' Birthday with a total of $5300!!!  Wow!!  All of these funds have gone directly into Thomas' medical account and I have already begun writing checks.

 Such a rewarding feeling to be able to pay these fabulous doctors, nurses and physicians who have been providing ultimate care to our sweet Thomas.  I have prayed diligently to God for his guidance and to provide for us.  I finally made the ultimate step and started seeking for care for Thomas no matter the costs.  The blessings have poured in from each of you and beyond.

A fabulous blessing last week was as bill that should have been over $2,000 dollars that had a courtesy discount that lowered the amount to $100.  That is GOD!!  Companies don't just give you a discount of $2,012.  Its amazing what happens when companies and people do things just because.

Tommas, Italy, 2 years old

I do want to share one last thing with you that I also found truly amazing this week.  Through my blog and word of mouth, many moms have come in contact with me through this site and from referrals.  We share frustrations, pain, love, medical diagnosis and our children. I pray that God continues to use me in this manner because it is such a blessing to reach out to these moms and share.  The latest I got this week was from Italy, her son Tommas (Thomas in English) is her third son who also has KFS.  He was born on April 5th, 2010.  Isn't that amazing!!  My Thomas is our third son born on April 29th, 2010.  That is not coincidence, that is God!  Isn't he adorable?!

Please continue to pray for us and all of those who have to deal with such rare and unusual conditions.  Pray for the medical field that they will have compassion for our children and others who have unknown futures due to their abnormalities that they will fight, research and find treatments.  Thank you for your commitment and undying support.  We are touched by you all, everyday!