We are continuing to work down our list this morning, but are also looking forward to tonight. We will be having our traditional get-together with our very good friends. Although our guest list of friends we have "rung in the new year with" has somewhat fluctuated from year to year, we have always spent every new years' eve since 2000 with Carrie and Dave. That's 11 years! Man, we really are getting old. Can I say how grateful we are for them? And the fact that they continue to keep us as friends, even though they are "8.5s" and we are "5s" at best (ha).
Over the past few weeks, Bryant and I have commented a few times that we can't wait for this year to be over, the year that has seemed "chock-full" of issues. Then we would commence to rattle off the list...Pa has a stroke, pregnancy issues (polyhydramnios, sciatic pain from so much fluid, knowing something could be wrong), Clark's birth and diagnoses, Ma has Shingles, surgeries and hospitalizations for Clark, the pain of "Daddy REALLY isn't here", etc. But in the scheme of a year, there were so many other things that were good. Jayda continues to be well, is doing great in school and is just being 9. Brynn has had a year of being the wonderful age of 4. Oh, how I love 4! {Can I freeze her, PLEASE!} Bryant completed a master's degree and we both have great jobs. We have a home, we have food, we have clothing, and most importantly, we have LOVE! And not just within our house love, but LOVE coming from all around us. From family, from friends, from co-workers, from our church family, from COMPLETE STRANGERS! The love has been shared in may forms; in prayers, in kind words, in gifts, in food {my favorite kind of love ;)}in phone calls from doctors "just checking in", in hugs, in pats on the back, in "what can we do?"s, and in smiles. In other words, we know 2011 was exactly how it was supposed to be, according to the creators plan. Of course, we wish for blessings in the new year, especially in terms of the health of our family, but we know it is already written, and no matter what comes our way, we can do all things....
As 2012 begins, we will remember the lessons of 2011. Especially the biggest one for me: the only thing for certain is this very moment that we are in and we should cherish the gift of the moment, no matter the circumstances of it. My goal for 2012 is to savor the small things (rocking Clark to sleep, reading with Jayda, helping Brynn find her lip gloss, having 3 minutes of uninterrupted conversation with Bryant) and to use as many of my gifted minutes in ways that will benefit myself, my family and others.....for good...
Saturday, December 31, 2011
Friday, December 30, 2011
Home again, Home again...
I am very happy to report that I am typing this from our living room and not from a room on 6 or 7 Children's. Clark did a fantastic job on the ride up yesterday morning, especially considering she wasn't allowed to eat in preparation for the Upper GI. She was actually asleep when we got there and we had to wake her up to start the x-rays. Fortunately, the study showed no obstruction in the esphogus and that the barium was passing through the Nissen site correctly, so that was good news. If either of these had been the case, she would have had to have some level of corrective surgery. One of the residents did the study, (one we hadn't seen before), but Dr. Bidgood saw our names on the list and came in to visit and give us his take. I mention this because he is one of the neatest people we have met at UNC, although we have met many great people there. He is an extrememly accomplished radiological doctor, but also has a Doctorate in Divinity from Duke. Because of this, when he is taking to us about the medical findings of the many different studies Clark has had, we also get a mini-sermon. He has the most calming, reverent spirit and voice. The only way I know how to explain it is that it is almost like having Mr. Rogers as your doctor. Anyway, we always love seeing Dr. Bidgood because it instantaneously puts us at ease, reminds us of God's presence and brings us down from any level of heightened anxiety.
After the Upper GI, we stayed in radiology to get a modified swallow study with Leah, one of the speech/feeding therapists. We had not had one of these before, so we weren't really sure what to expect. The x-ray tech began to "transformer" the room as we waited, and when Leah arrived, we learned that Clark was going to be sitting in a small chair and that she would feed her a bottle and some cereal and applesauce and that we would all watch this go down from the side via x-ray. We were a little taken aback because Clark has not had any solid foods up until this point, and solids can be a scary thing for EA/TEF kids, so we didn't know what to expect. Sure enough, though, Leah started to feed her, and , although Clark gave her some funny looks, she went right to eating. After a couple bites, though, she started coughing some, so Leah stopped with the solids and started giving her the bottle instead. I have to say that it is quite surreal to see the food travel through your child's complete digestive system, but is also a great sight to see. I regret that I didn't take pictures, as I have pictures of the other two girls as they ate their first solids, but I guess maybe we will "pretend" later that we gave her her first solids at home. We won't tell her if you won't! ;)
After the study. Leah basically explained that, although Clark has every reason in the world to have severe feeding problems, she has very little physical problems with getting food down. There was a small amount of pooling of her formula in the esophogus just above the suture site where it was reconnected, but after a few seconds, it would go on it's way. She explained that this could be causing some of the issues with the coughing, especially is she was drinking her bottle in more of a lying position, as the pooled formula may be reentering the throat before it has time to go all the way down and her cough keeps it from aspirating into her lungs. Even so, she felt like her reaction to the feeding was more severe than the physical symptoms {imagine that! One of our kids overdramatizing!?! No way! ;)} and that she could be experiencing some true neurological reactions that makes the pain seem way worse than it is in her mind. She explained that this happens to kids who have had multiple GI surgeries very early in life, as their nervous system in these areas are "tampered with" before they have even finished developing, so they sometimes experience "mixed signals". We will just have to keep an eye on her level of discomfort while feeding to see if her reactions improve.
We then went to see Lynn, on of the Peds surgery NPs, Christi, one of the dieticians, and had a quick chat with Dr. Champion, her pulmonary doctor. The plan, for now, is to continue to feed her through her g-tube for most of her feedings. We will attempt one bottle feed a day so that she doesn't lose her oral skills for feeding. At night, she will be continuosly fed through a feeding pump. The hope is that these will give her upper GI area a break and that this will help her to eat more comfortably later. The biggest fear is that she will begin to completely refuse food and we don't want that to happen. We want to make sure eating is a good experience so she will want to keep doing it.
The big girls were so glad that we were back home and we had family movie time last night (although Mommy watched her eyelids through some of it). This morning, we are waiting for the medical supply company to bring and train us to use her pump and marveling at our to-do list that we made on Monday, and at how little we have actually accomplished, although it's FRIDAY! AHHHHH! Even so, we are SO glad to be back home, to be able to continue our way down said list, and to start 2012 in a "happy place".
After the Upper GI, we stayed in radiology to get a modified swallow study with Leah, one of the speech/feeding therapists. We had not had one of these before, so we weren't really sure what to expect. The x-ray tech began to "transformer" the room as we waited, and when Leah arrived, we learned that Clark was going to be sitting in a small chair and that she would feed her a bottle and some cereal and applesauce and that we would all watch this go down from the side via x-ray. We were a little taken aback because Clark has not had any solid foods up until this point, and solids can be a scary thing for EA/TEF kids, so we didn't know what to expect. Sure enough, though, Leah started to feed her, and , although Clark gave her some funny looks, she went right to eating. After a couple bites, though, she started coughing some, so Leah stopped with the solids and started giving her the bottle instead. I have to say that it is quite surreal to see the food travel through your child's complete digestive system, but is also a great sight to see. I regret that I didn't take pictures, as I have pictures of the other two girls as they ate their first solids, but I guess maybe we will "pretend" later that we gave her her first solids at home. We won't tell her if you won't! ;)
After the study. Leah basically explained that, although Clark has every reason in the world to have severe feeding problems, she has very little physical problems with getting food down. There was a small amount of pooling of her formula in the esophogus just above the suture site where it was reconnected, but after a few seconds, it would go on it's way. She explained that this could be causing some of the issues with the coughing, especially is she was drinking her bottle in more of a lying position, as the pooled formula may be reentering the throat before it has time to go all the way down and her cough keeps it from aspirating into her lungs. Even so, she felt like her reaction to the feeding was more severe than the physical symptoms {imagine that! One of our kids overdramatizing!?! No way! ;)} and that she could be experiencing some true neurological reactions that makes the pain seem way worse than it is in her mind. She explained that this happens to kids who have had multiple GI surgeries very early in life, as their nervous system in these areas are "tampered with" before they have even finished developing, so they sometimes experience "mixed signals". We will just have to keep an eye on her level of discomfort while feeding to see if her reactions improve.
We then went to see Lynn, on of the Peds surgery NPs, Christi, one of the dieticians, and had a quick chat with Dr. Champion, her pulmonary doctor. The plan, for now, is to continue to feed her through her g-tube for most of her feedings. We will attempt one bottle feed a day so that she doesn't lose her oral skills for feeding. At night, she will be continuosly fed through a feeding pump. The hope is that these will give her upper GI area a break and that this will help her to eat more comfortably later. The biggest fear is that she will begin to completely refuse food and we don't want that to happen. We want to make sure eating is a good experience so she will want to keep doing it.
The big girls were so glad that we were back home and we had family movie time last night (although Mommy watched her eyelids through some of it). This morning, we are waiting for the medical supply company to bring and train us to use her pump and marveling at our to-do list that we made on Monday, and at how little we have actually accomplished, although it's FRIDAY! AHHHHH! Even so, we are SO glad to be back home, to be able to continue our way down said list, and to start 2012 in a "happy place".
Wednesday, December 28, 2011
"Home" away from Home
Well, it looks like we are heading back to (what feels like) Clark's second home in the morning. We talked our good friends at the UNC Children's hospital and they are requesting our presence for an Upper GI tomorrow morning at 9:30. We aren't exactly sure what's going on, but she has had increasing trouble with her feedings over the past several days and for the past couple days, we have only been able to get her feed in through her g-tube. This could mean nothing or could mean something, such as an esophogeal stricture that sometimes occurs in kids who have had an EA/TEF repair. This basically means the esophogus scar tissue may be closing up and blocking (either partially or fully) anything that she is taking by mouth. We will just have to see what the GI study shows us in the morning. In the meantime, we are off to pack the "just in case" bag (learned that lesson a couple clinic visits ago~ you ALWAYS take a bag) and packing the girls for "just in case" overnight stays, as well. Not exactly what we had on our to-do list earlier this week, but the timing could definitely be worse. The hope is we will be back in plenty of time to spend New Years' Eve with some of our good friends and to start 2012 together, as a family, at HOME (the real one!)
Introduction
Ok, the truth is, this is a blog that I should have started months ago. Specifically, 5 months ago. Or maybe 5 years ago? Or 9 1/2 years ago? Or maybe 12 years ago last week... except I'm thinking blogs didn't even exist at that point, or at least not for "normal" people?
Anyway, the point is, there have been many "happenings" in these last several years for this set of Copelands and it's too bad that this is my first official public documentation of aforementioned events.
If you want to know more about what has happened up until now, please click the tab on the top of this page that says "About Us". I haven't actually typed that part up just yet, but hopefully it will be there VERY SOON! In the meantime, I am going to just pick up right in the here and now, so the next post will be informing you about what's going on in the crazy house of ours as we speak! If you don't know us yet, I warn you that you may want to back out now before you start. But if you choose to keep reading, I think you will find that our family very rarely experiences a dull moment, even when that's exactly what we want!
Anyway, the point is, there have been many "happenings" in these last several years for this set of Copelands and it's too bad that this is my first official public documentation of aforementioned events.
If you want to know more about what has happened up until now, please click the tab on the top of this page that says "About Us". I haven't actually typed that part up just yet, but hopefully it will be there VERY SOON! In the meantime, I am going to just pick up right in the here and now, so the next post will be informing you about what's going on in the crazy house of ours as we speak! If you don't know us yet, I warn you that you may want to back out now before you start. But if you choose to keep reading, I think you will find that our family very rarely experiences a dull moment, even when that's exactly what we want!
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