We (Sara, Samuel and I) made the trip down to and back from Atlanta yesterday while some friends had a 'jammy day', played in a creek, went to the Library, and had lots of other kinds of fun with Anna Catherine and Colin back here in TR. The trip to Children's Hospital of Atlanta at Scottish Rite went well. We had a good visit with the two doctors who will be involved in fixing Samuel's cleft lip & palate. Dr Joseph Williams (Plastic Surgery) and Dr Michael Granger (Craniofacial Orthodontist) both felt like the NAM appliance would be a big help in treating Samuel's clefting pre-operatively. As well, they were very willing to work with us in the frequency of necessary trips to Atl for adjustments.
Where we go from here: In the next week or two we will head back to Atl to get the impression of Samuel's palate. Two weeks after that, they will 'deliver' the NAM to us (install it basically). After that, we will begin to get it adjusted weekly or every other week. The goal of the NAM is to actually bring together the two sides of Samuel's cleft. At this point, I can get the whole tip of my pinky finger in the front of his cleft so it seems like there is a long way to go. However, the Drs have said that in a few weeks with the NAM, it is likely that the gap will be closed. After that point, they will install an additional piece to the NAM that is designed to raise his left nostril over time - helping that repair also. After the delivery of the NAM, it is typically 12 weeks till the lip surgery. So it looks like July/August for Samuel's initial lip repair. At which point the NAM comes out. They will also want to do his palate before 1 year of age. So there are at least two more surgeries before Samuel turns a year of age.
Over all, we're doing fairly well. It can be a little overwhelming every time we get back into the hospital setting. We just get used to doing life here at home and sort of forget that Samuel has a very long road ahead full of more Doctors' offices and 'procedures.' It seems like we should know this by now on this road we've been traveling - that we can only allow ourselves to fight today's battles and not get caught up in all of the possible difficulties of the future. Alas ... one day at a time. One Doctor's appt at a time. One thing at a time. For us, it's an 'easier said than done' proposition. But, so it goes. And so we seek to walk. One day a time.
Thank you for your continued prayers for us. We need them. Pressing on ~ grant
for keeping up to date on the life and happenings of little Samuel Patton Beachy
Samuel Beachy
Who am I?
~ 3rd child of Grant & Sara Beachy
~ younger brother of Anna Catherine (9) and Colin (6)
~ b. Feb 27, 2008 (present with us)
~ d. Feb 18, 2013 (present with Jesus)
~ younger brother of Anna Catherine (9) and Colin (6)
~ b. Feb 27, 2008 (present with us)
~ d. Feb 18, 2013 (present with Jesus)
~ a fighter
~ a child of the covenant
~ a child of the King
~ a child of the covenant
~ a child of the King
A word from my mom and dad
Our third child, Samuel, was born on February 27, 2008. He was shortly thereafter diagnosed with a rare syndrome - CHARGE. This condition is seen in approximately 1 in 12,000 births. In the first month of his life, Samuel had 3 surgeries, one of which was open-heart to fix two holes and a short aortic arch. There are many more surgeries to come and our list of specialists continues to grow (current Specialist Count: 7).
Over the past several months, even before Samuel was born, we realized we were in for some hard days, weeks and months. While we knew little of exactly what was going on with our son and how it would effect our lives, we certainly knew that we were not going to be able to make it alone. God has been more than faithful to provide us with all that we have needed - through corporate worship, through his Word, and most pointedly, through his people.
In the midst of all of this, when we have had our wits about us, we have been able to pray one simple line from a great old hymn of the Christian faith. Three words have been, on many occasions, all that we have been able to utter as far as prayer goes. And - as one friend reminded me - when we aren't able to use words to pray, sometimes we must allow our tears to be our prayers. No matter the means, over the past several months, we have been trying to trust the Lord of heaven and earth simply for 'strength for today.'
Over the past several months, even before Samuel was born, we realized we were in for some hard days, weeks and months. While we knew little of exactly what was going on with our son and how it would effect our lives, we certainly knew that we were not going to be able to make it alone. God has been more than faithful to provide us with all that we have needed - through corporate worship, through his Word, and most pointedly, through his people.
In the midst of all of this, when we have had our wits about us, we have been able to pray one simple line from a great old hymn of the Christian faith. Three words have been, on many occasions, all that we have been able to utter as far as prayer goes. And - as one friend reminded me - when we aren't able to use words to pray, sometimes we must allow our tears to be our prayers. No matter the means, over the past several months, we have been trying to trust the Lord of heaven and earth simply for 'strength for today.'
Great Is Thy Faithfulness
Great is Thy faithfulness,
O God my Father;
There is no shadow
Of turning with Thee;
Thou changest not,
Thy compassions, they fail not;
As Thou hast been,
Thou forever will be.
Great is Thy faithfulness!
Morning by morning
New mercies I see.
All I have needed
Thy hand hath provided;
Great is Thy faithfulness,
Lord, unto me!
And springtime and harvest,
Sun, moon and stars
In their courses above
Join with all nature
In manifold witness
To Thy great faithfulness,
Mercy and love.
And a peace that endureth
Thine own dear presence
To cheer and to guide;
Strength for today
And bright hope for tomorrow,
Blessings all mine,
With ten thousand beside!
Words: Thomas O. Chisholm
Music: William M. Runyan © 1923