Thursday, October 11, 2012

Jude has been busy!


As I indicated in the title of this blog, Jude has been a busy boy!

The picture above is an example of the many ways that Annabelle shows her love for her sweet baby brother. He LOVED it!

There is quite a lot to share so I am going to stick to bullet points. Bear with me...

  • We made a trip to MUSC on Monday (of last week) for Jude's appointment with the development pediatrician at the high risk clinic. Jude was evaluated by the therapists and doctors to determine where they felt he was developmentally in several areas. As a side note, we have quickly learned that Jude has a serious case of "white coat syndrome". If you put him in a room with crinkly paper on the patient table and *anyone* with a white coat on he is in full meltdown mode. But really, who can blame the little guy? I mean, seriously!
  • So, let's jump in on the results of his evaluation: Feeding? Jude is extremely delayed in this area (yup, we are already quite aware of this). However, the doctors gave us a big pat on the back for all our attempts. We are doing all the right things to encourage Jude to eat....he's just gotta want to eat. We discussed the possibility of feeding "boot camp" for Jude in Atlanta but we are all in agreement that this is something that we should re-visit at a later date. 
  • Speech? Jude is delayed in this area too but is making great strides towards improving. Since our appointment Jude has started babbling even more and even said "ma-ma" this weekend! We are feeling encouraged and hopeful that he just needs a little extra time to catch up and eventually he will be right on track. He will be evaluated by a new home speech therapist on Thursday. I am really curious about what her thoughts will be. More to come on that...
  • Physical development? Jude is behind on this area by a few months. He is getting much more stable with his unassisted sitting. He is reaching and leaning to grab objects. He is starting to spend more and more time on his hands and knees and this afternoon he gave the slightest hint towards lifting his hand towards crawling. I am quite certain that Jude *want* to get moving. It's just that he has to get his toddler sized (more on that later) body to cooperate with him. Our PT says that Jude's physical development is a lot like an overweight person's on the Biggest Loser. He is capable of using his body in *normal* ways it's just that moving his big body requires so much more energy and he has to build muscles to accommodate his frame.
  • Fine motor skills? Completely on track. No delays. Praise God!
  • Problem solving skills? Completely on track and even a little advanced! A-mazing. I seriously shed a few tears when Jude's doctor shared this with us. I just kept thinking "this should not be". I mean, seriously, Jude was on ECMO for 23 days. ECMO is so dangerous (and so amazing at the same time) and can create so many development delays. I just feel immensely thankful that he is "problem solving" so well despite his scary journey. 
  • Ok, back to Jude's size! Jude is weighing in at a whopping 23lbs and is hanging out around the 89th percentile in weight, height and head circumference. As you can imagine my arms are getting pretty strong these days. 
  • The docs also gave us permission to take Jude out a little more. We have been SO cautious about taking our little guy out in public. I mean, he has hardly been out AT ALL. (I'm talking no grocery store, church, restaurants, etc.) The boy pretty much only went to the doctor's office. But Jude's doctors said that he is "hearty" enough to start venturing out into public life....and it is good for him developmentally. They encouraged us to continue to be cautious and make smart choices about who he is around and where we take him. So, you may see us out with Jude. But please help us keep these guidelines for Jude's safety. If you are sick or have been sick in the last 3 days please stay away. Even if you only think it is allergies, please avoid contact with our little man. If someone in your household is ill we'd prefer that you'd keep your distance too. We will likely bring Jude to church with us but we will keep him out of nursery. And please don't take offense if we leave an event or head out the door if you or someone in attendance appears sick.  And please help us keep any and all tummy bugs far, far away from our household. Please forgive my serious tone. But I know that all of you are in agreement that we've gotta keep Jude healthy as much as possible. We also know that Jude *is* going to get sick at some point. But we want to do our best to avoid this until he is a little older and his lungs are much stronger. He will need to build immunities but our desire is to do this when his lungs are bigger and stronger. So, if you see us out at Target please say hello and greet our little guy. We want you to share in the Lord's miracle...just hide from us if you are feeling "under the weather". 
  • Jude also got a follow up ultra sound to check on the status of his ventriculomegaly. The ultrasound showed no changes to the fluid levels in his brain and currently his condition remains stable. This is exactly what we wanted to hear! We will have a follow up visit with neurology to continue to monitor this but it has remained stable since his first hospital stay!
  • Last Wednesday we also had a follow up visit with the surgery team. Before the appointment Jude and I (yes, I made the journey to MUSC *alone* with Jude. Big pat on the back for my solo mommy skills) made a trip to radiology for an x-ray of his chest/abdomen. Then we took the elevator up to the surgery clinic and met with several doctors and of course, Dr. Hebra (our hero!). Dr. Hebra joked that he did not want to look at the x-ray because he was scared of what he would find. But alas, he was wrong! Everything was just where it needed to be in Jude's little body! PRAISE GOD! His artificial  left diaphragm is slightly higher than his right, but this has always been the case and will continue to be. SUCH good news to know that everything is as it should be!
  • I talked with the surgery team about Jude's retching/gagging and they said that it is perfectly normal for his to still do this. They said to try to *burp* his g-tube more often. The only complication that we discussed is that sometimes retching/gagging can cause the Nissen to slowly undo itself. We are wishing and hoping and praying that this will not be the case with Jude!
  • Also new from the surgery appointment: Jude is no longer on Elecare...he has switched to Alimentum formula! We met with the nutritionist from the surgery team and we are in agreement that we both think that Jude's problem was not with digesting his formula. The problem was that he needed a Nissen. So, we decided to try Jude on Alimentum for a month and after that we will try regular formula! Just one more step in the right direction! And so far so good!
  • We will have another follow up appointment with surgery in a month, so please keep praying for a healthy artificial left diaphragm and a happy digestive system. After that appointment Jude will be followed primarily by GI from that point on unless something crazy happens.
  • In other news, Jude is finished wearing his helmet!! Woo Hoo! Yep! We are quite proud of his cute little round head. It filled out nicely and he is a little less sweaty (and stinky) now that the blue hat is gone! Yippee!
 That is all for now, folks. I hope I did not miss anything. It is getting harder and harder to keep on track with the blog, forgive me. We want to keep you all posted on our little man. Thank you for praying!

Thursday, October 4, 2012

Coming soon

Hi friends!

Just wanted to let you know that Jude had two follow up appointments at MUSC and everything went really well!

My plan is to do a blog update in the next few days to tell you about all the good news we received. Keep an eye out!

But for now we are packing our bags and heading out soon for a long weekend away in Greenville! We are SO excited about seeing all of our friends in the upstate! Pray for lots of rest and lots of fun!

God bless!