Friday, January 3, 2014

Luke in Georgia

We moved to Georgia October 15.  We’ve been here over two months, and I can hardly believe it.  In some ways it feels like we just got here last week, and in some ways it feels like we’ve been here much longer.  Lawrenceville is starting to feel like home.  
We’ve made significant progress on all of the major tasks that we have to accomplish.  I will send in my application for Licensure as a Marriage and Family Therapist in Georgia very soon.  Then it should be just a matter of waiting a few weeks for the paperwork to go through.  I have no reason to expect that my application will be denied.  David has worked hard spending hours at a time on the internet and on hold on the phone registering for Obama Care.  Just before Christmas, we were finally able to purchase a health plan and get health insurance to pick up on Jan 1 when our TX Blue Cross health insurance ends.  Whatever your thoughts or opinions about Obama Care, we are hugely relieved to at least have health insurance coverage.  
I’ve been working on getting Luke’s application completed for the Katie Beckett waiver, which will hopefully qualify him for Medicaid based on his medical fragility instead of our family income.  A few weeks ago, I thought the application was complete, but then the caseworker told me that they still require a developmental evaluation.  I took Luke to our pediatrician, but then found out that he could not complete the evaluation.  We have Luke scheduled for neuropsychological testing with Children’s Healthcare of Atlanta in late January.  The receptionist there told me that their evaluation will indeed satisfy the requirements for the Katie Beckett application.  I’m working on getting Luke’s appointment moved up.  The sooner Luke can get Medicaid the better.  We can’t pay for the therapies Luke needs out of pocket, so we really need for this to go through.  
So how is Luke doing?  He’s had somewhat of a difficult time adjusting.  We’ve had quite  a few behavior challenges.  It seems we’re through the worst of the adjustment period, though.  He’s made some friends at church, especially a set of boy and girl twins who are six months younger than he is.  He feels very comfortable around this family, plus all three of our elders, and a few others in our congregation.  Luke has been going to Sunday school class by himself every Sunday with no problems, which has been great.  However, he will NOT sit in church service for more than a few minutes without completely going bonkers (Where’s Larry when you need him??).  We’re working on that.  Thankfully our church has children’s worship during the sermon, and Luke loves to go, so I can at least sit in the auditorium during the sermon.  Sam does great in the nursery loving on all the sweet ladies for both Bible class and worship service.  
The playground for our apartment complex is right outside our door, so we go for at least 30 minutes to an hour almost every day it doesn’t rain (it rains A LOT here in Georgia!).  Luke adores playing on the slide.  Sam likes being carried around in the sling and dreaming about the day when he can play on the slide with his big brother.  
I’ve given up trying to potty train Luke for the time being.  I talked to our pediatrician who suggested that we wait a few more months before trying again in order to give Luke more time to adjust to his new home.  I think that’s wise advice.  So Luke’s back in Pull-ups, and we’re trying to encourage him to use the potty as much as possible without pressuring him at all.  Some days we’re more successful than others.  I guess we’ll get there eventually.  
Eating is going relatively well.  We’re still only making Luke do one oral meal a day of applesauce or yogurt.  Meals are going much smoother and taking less time than they were a few weeks ago.  We had several days where Luke and I had stand-offs that lasted 1-2 hours.  It was extremely frustrating, but I think now we’re getting some payoff finally.  Soon I will move him to two meals a day, and maybe start blending his meals myself and thickening the texture.  Oh how I need the guidance and support of a feeding therapist.  I feel adequate to maintain Luke’s eating skills, but I’m kind of shooting in the dark when it comes to helping him advance his skills.    My prayer is that Medicaid comes through for us quickly and we can employ a feeding therapist and an occupational therapist very soon. Additionally Luke has been more interested in food, asking for bites of our food or Sam’s food.  At least twice a week we really try to sit down together as a family at the dinner table.  Luke gets his own bowl of food, broken up in small pieces.  We make him taste everything, but he has yet to chew or swallow a bite of anything that hasn’t been puréed.  The other night, Luke chose to eat applesauce at the dinner table.  It was only a few bites, but Luke at all of it (with quite a bit of encouragement from David and me), feeding himself with his own spoon.  Yesterday, instead of yogurt or applesauce, I fed Luke a level 3 Gerber baby food.  The texture was quite a bit thicker and even had some tiny chunks.  Luke gagged more frequently than usual, but with coaching, he not only ate it, but ate a larger amount than he usually does at lunch (5 oz).  We’re making gradual progress on this front.  
David jokes that Luke gets his stubbornness from his mom.  But honestly, I think he really does.  I’m learning that whether it’s potty training, eating, dressing, or something else, I am always in danger of setting my expectations too high, wanting success or even perfection too much, or pushing Luke too hard.  I was like that as a student, pushing myself for straight As, as a gymnastics coach, pushing the kids to finish their assignment, no matter what, and now I’ve been carrying that over into parenthood as well.  For instance, Luke may have had a great meal up until the last bite.  I can clearly see that he doesn’t want that last bite, but the perfectionism in me drives me to push him to eat it, no matter what.  So we end up fighting and negating his success, just because of my stupid stubborn preference to have things completed.  I need for God to give me grace every day while I’m learning that mercy must take a bigger part in the way I parent Luke.  Luke and I are so much alike.  Both of us want to be in control.  I know that I’m the parent, and there are things that I absolutely need to be in control of when it comes to Luke’s safety and discipline.  However, I also must remember that Luke has never ever done anything on anyone else’s timeline but his own.  I know this is true, but I forget it so frequently.  I get stubborn and push, and Luke and I inevitably butt heads and make our days much harder than they need to be.  So I guess one of my new year’s resolutions is to temper my perfectionism with mercy for others, for myself, and especially for Luke.  
God has been very faithful to send us to amazing doctors.  I love our new pediatrician.  He has been incredibly helpful as I’ve been working on Luke’s Katie Beckett application, as well as very gentle and supportive when I’ve had questions about Sam.  Luke’s new pulmonologist is also great and has been very helpful with our Katie Beckett application.  We like Luke’s new cardiologist as well (although NO one will ever replace our beloved Dr. Kao).  All of them seem very professional, very thorough, and to have good bedside manner.  
Luke’s cardiologist has referred us to the neuropsychology program at Children’s Healthcare of Atlanta.  Before we knew about the requirement for the developmental evaluation for Katie Beckett, I was very interested in the neuropsychology program because of some of the things we’ve noticed with Luke’s behavior.  It is difficult for us to tell what in Luke’s behavior and cognitive processes are “normal” developmental delay — meaning he’ll get it eventually, he just is behind from all the the time he spent in the hospital — and what, if anything, might be an indication of something more serious as a result of the seizures, head bleed, and hyponutremia (dangerously low sodium level) he suffered during his first year of life.  My hope is that the neuropsychological testing results will give us some solid answers about where he is in his development and suggest some practical ways we can work with him to help him improve.  Hopefully it will help us know better what we can and should expect from Luke, and what we might be doing that is holding him back and enabling him to stay dependent on us for so many things (potty training, dressing, self-feeding, chores, etc.).  This testing will be a three-appointment process.  The first appointment will be attended by just David and me, the second will be the actual testing, and third will be the appointment where we get the results.  Right now the first appointment is scheduled for Jan 7 and the testing for Jan 22, but as I mentioned before I am trying to get it moved up.  
Finally, let me update you about Luke’s cardiac status.  During his last heart surgery in March, Dr. Mendeloff left a fenestration, basically a pressure release valve/hole, in Luke’s right atrium.  This way, if the pressure in that chamber became too great due to the larger volume of blood in his pulmonary arteries, the blood could escape through the fenestration.  In kids with Luke’s repair, sometimes they leave the fenestration open, and sometimes they close it after a period of 6-12 months after the Fontan surgery.  We have reached that window of time now, and so Luke’s 5th heart catheterization is looming on Friday morning.  They will insert a catheter in the artery either in Luke’s groin or his neck (sub-clavian).  Using the catheter, they will take pictures, measure pressures, etc.  If the numbers support closure of the fenestration, they will be able to close it during the procedure Friday without having to do open-chest surgery. If it doesn’t look like they should close the fenestration, we may have to do another heart cath down the road sometime to check the same thing.  We are obviously hoping that the pressures will all look good, they can successfully close the fenestration, and we can say goodbye to hospital heart units and cath labs forever.  My parents are coming in tonight to support us during this hospital stay.  My mom will keep Sam at their hotel room nearby the hospital so I can stay with Luke, but run over and take care of Sam if I need to.  They aren’t planning to keep Luke overnight, but I’m packing bags for all of us.  Luke has ALWAYS stayed overnight, so I’m kind of expecting him to this time as well.  That’s not being negative, it’s just being realistic.  
This heart cath causes me anxiety for several reasons.  I keep thinking about the last cath when Luke had so much trouble getting off the ventilator after the procedure.  They ended up having to intubate and extubate (insert and remove the breathing tube) three times total, and we spent the night in the cardiac ICU.  Luke never does things according to plan, and I’m just waiting anxiously to see how this one is going to go.  I pray that it is smooth sailing and very boring, but it never is with Luke.  He likes to keep everybody on their toes.  This is also the first (and hopefully only) major procedure that we’ve done in Atlanta.  We haven’t met the doctor that will be performing the cath.  I’ve only spoken with the anesthesiologist on the phone.  While the people at Medical City Dallas CHSU have become our extended family, it is hard to go to a completely new hospital Friday knowing that we won’t see any familiar faces on our medical team.  It’s scary to work with a team that hasn’t been a part of Luke’s history or know his personality when his personality plays such a huge part in how he does at each hospitalization.  And it will be very tiring to educate each new person we talk to about his history and habits.  Also, Luke is very much aware of what it means when we go to the hospital now.  I am dreading dealing with his post traumatic stress disorder.  I wonder if they’ll give all of us a healthy dose of Versed at the door… On top of all that, and this is admittedly minor in comparison, we can’t take Sam to the hospital because of hospital policy, and this will be the my first time to be away from Sam for most of the day.  Plus, it’s a new hospital  which adds the stress of not knowing the best route to take to get there, what the traffic will be like, where to park, the best places to get food, etc.  And we have brand new health insurance—I’m praying that everything goes smoothly with billing. 
All this being said, God is faithful.  All the time.  I know that he will go before us and be our rear guard.  He has every single time before this. He has never left us alone, even for a moment.  I am so thankful to know that we have so many people that love us who are praying for us and supporting us, both here in Georgia and from miles and miles away in Texas, New Mexico, Oklahoma, Colorado, California, and other places across the country.  God is our strong tower.  We are nothing without him. But you all are his hands, arms, eyes, and ears—the body.   I look forward to having this one behind us and to updating you with Luke’s progress in the near future.  Until then, please keep praying.  We hope that our journey with Luke’s health uplifts you, and more importantly causes you to look to God the Father who loves you with a crazy love.


Rachael, David, Luke, and Sam

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