Friday, February 26, 2010

To London, to London...

We were back to London the other week for a check-up for Jude and our first appointment with the geneticist. We're getting pretty good at these trips, learning all the tricks that make the best of the day. Things like:
a) show up at least half an hour before your appointment, because after a two hour car ride Jude will want to nurse before anyone starts to poke and prod him.
b) show up half an hour early... but be prepared to wait for two hours.
c) don't book appointments close together because of b).
d) bring a stroller or sling, because Jude is getting to be a bit of a lug to cart from on end of the
hospital to the other in his car seat.
e) always fill your bag with some snacks and an extra bottle of water because you never know
when you'll get the chance to eat a meal.
f) have a bottle of infant Tylenol in the diaper bag for after appointments
g) find fun things to do at the hospital, because spending another $9 on parking, if you leave the
parking lot in between appointments, is ludicrous.
This last visit was pretty good. Only an hour wait for Jude's check-up with Dr. Merrit (one of his surgeons) and then a two and a half hour break before seeing the geneticist. This is what we did while Jude slept and recouperated from going up a dilation size at his first appointment:
Peter's very competitive and takes
for-e-ver when it's his turn!!
Good thing I'm a patient woman :)

We made up our own game channeling the rules
of Rummikub. Ya, we're Dutch.

But, with life as crazy as it is right now,
cards and a cup of Timmies at the hospital
cafeteria is a pretty sweet date afternoon :)

The following is a little update on our sweet Jude. The basics are that he's been officially diagnosed with VACTERL phenomenon, we're working on his dilations and will hopefully have him right where he's supposed to be by the time he's five months old. Developmentally he's right on track or above the norm and, despite the odds, he's in the 75th percentile on the growth chart! Yay Jude! He continues to amaze his doctors and we are just absolutely smitten with him!
If you just want the basics, you can stop reading now :) But I know that many of our family and friends who are reading this are actively involved in or have a history in the 'world of medicine', so I thought I'd go into a bit more detail for y'all (and for our own 'records'). So here's the dealy-o
1. Since Dr. B has gone on maternity leave, Jude has now come under the care of Dr. Merrit. Since he assisted with Jude's surgery back in December he's been following him and we couldn't be more grateful to have him come on board! He is incredibly caring and is a phenomenal doctor. He contacted the Cincinnati Children's Hospital which has the only pediatric colorectal center in the world. He's put Jude on their dilation schedule and, while it's much more aggresive and intensive, they are the experts and we are seeing that this will be a very positive, albeit difficult, part of Jude's healing and ,hopefully, complete recovery. We started at a size 6 and are now at a 12. By next month he needs to be at a 13, and then he's right where he's supposed to be. There will be quite a long tapering off period (about 6-12 months yet) but the hope is that he will have normal functioning after this. Switching to a 12 was very difficult, I felt very sick the first time we did it (can't even imagine what it's like for Jude) and 13 is characteristically also a very hard transition. Thankfully, Jude is quick to recover and usually by the third day after a size change, he's back to his normal self. He is such a little trooper!
2. After all the test results were in, Jude had four of the seven markers for VACTERL: vertebral anomalies, anal atresia, renal anomalies and limb defects. In a full skeletal x-ray it was discovered that Jude actually has extra ribs (a right C7 cervical rib, hypoplasia right ribs 1-3 with aplasia of the right third rib, there is a bifid right 4th and 5th rib). In about 5 % of VACTERL individuals the vertebral anomaly manifests itself in the ribs instead of the spine. We are so thankful that Jude falls into this small category! Also, 70% of individuals have cardiovascular anomalies. Jude still needs his follow-up echo done, but his doctors think that from the sound of things that his heart valves have closed up on their own! Praise the Lord! When all was said and done, we left the appointment feeling very grateful.
So that's where it's at with our little miracle boy! He's a roly-poly little chap with smiles and giggles for everyone. And while he seems to enjoy everyone, he does have a special fondness for his mama, which is more than okay by me.
This wee lad has definitely stolen our hearts.

Don't you just want to kiss those cheeks!!

We thank you, O God!
We give thanks because You are near.
People everywhere tell of your WONDERFUL deeds.
~Psalm 75:1~

3 comments:

  1. We praise the Lord for the wonder and beauty He has given you. You are always in our thoughts Angela and we trust that God keeps baby Jude in His care each and every day. Jude couldn't have been given better parents to love him and teach him God's wonderful word and love.

    ReplyDelete
  2. He is such a little angel Angela. It is amazing what they can do with modern medicine. You are constantly in my thoughts.

    ReplyDelete
  3. WOW!! Look at that little man lifting his head!!!!

    Ange, you're doing an AMAZING job! I cannot believe with everything you've been through in the last few months, you're still sane!!! I know I wouldn't be!!!

    He's a handsome little man!! Spikey hair and all!!!!

    ReplyDelete