July 14, 2009 by Brooke.

Just got a call from Pediatric Endocrinology at UVA.  Apparently Dr. Hoyer (the cardiologist at UVA) and Dr. Deboer (endocrinologist) have been discussing Jade’s case, and so they made her an appointment.  She’ll go see Dr. Deboer on September 2nd.  I really love that Dr. Hoyer made the appointment.  Seeing an endocrinologist was his idea, so they can rule out anything hormonal causing her growth issues, but basically just said that we could make the appointment at our leisure - sometime before her next cardiology check up.  To me, him having the conversations with Dr. Deboer and having them go ahead and set up an appointment shows me that he’s trying to be proactive and get more involved in her care.  I’m liking him more and more.

Honestly, I really don’t expect anything to turn up at this appointment.  My hunch is that she’s just genetically tiny.  But he’s right, it’s a good idea to rule out anything that might need treatment.  We just ask that God would have his hand on the testing and appointment and give wisdom to the doctors, that they would be able to figure out what’s cause for concern and what’s just normal for Jade.

Posted in Jade Updates | Print | 1 Comment »

July 1, 2009 by Brooke.

Just got off the phone with the cardiologist (he’s AWESOME about calling me at home for stuff).

He said that he’s reviewed her results from yesterday and talked to the doctor who saw her and they really think the slight enlargment of the left ventricle is not due to any problems we need to be concerned about, but just a normal part of there being extra blood flow across the shunt between left and right ventricle.

He said that after reviewing the Echo from UVA, it does look like they were able to isolate the measurements from the VSD and the the measurements from the DCRV (muscle bundles) and that the higher numbers were just a product of the VSD continuing to get smaller, which is a very, very good thing.

He said the size is the eternal question that everyone’s wondering, but at this point they really doubt that her heart is causing it, and that’s why they want her to see an endocrinologist.  If the endocrinologist doesn’t find any abnormalities in her growth hormone levels, or thyroid function, they’ll consider that it’s more than likely just a quirk of her genetics and she’s truly just a tiny kid (someone has to be, right?).
He said that he wants to continue to see her every 6 months, especially if the endocrinologist comes back with nothing - *just in case* it is somehow related, and there’s something they’re missing.  If the endocrinologist does find that it’s related to a hormonal issue, then they’ll let him address that and put her back to seeing the cardiologist every 12 months.

After talking with him, I’m much more reassured.  So we’re back to just keeping an eye on things, but everything sounds very positive!  Praise the Lord!

Posted in Jade Updates | Print | 2 Comments »

June 30, 2009 by Brooke.

So we never did get a surgery date.  As expected, UVA wisely wanted to do an echocardiogram and EKG at their clinic at UVA before deciding anything.  That appointment was today.  And boy, she did REALLY well today.  She cried during the EKG (as usual, she hates the stickers they use all over her body), but they wisely had Dora the Explorer on in the Echo room, so she totally zoned out during that, which allowed them to take their time and really get some great pictures and measurements of everything.  Of course she had a doctor and two med students in her room for the consult, so she clammed right up and barely talked to them at first. The doctor was really sweet and gentle, and she was great about answering his questions.

The news is no news, really. We’re kind of back where we were. LOL

After having a really in-depth Echocardiogram, the doctor at UVA said he think the higher pressure gradients they are seeing are due to the VSD continuing to get smaller, not the muscle bundles in the right ventricle (Double Chambered Right Ventricle), so they’re not recommending surgery at this time.  HALLELUJAH! He did say it’s highly unlikely that she won’t need the surgery at some point in the future, but they’d much rather wait till it becomes obvious the muscle bundles are causing the pressure gradient increase, than to possibly rush in, especially since those muscle bundles can sometimes grow back.

They did say her left ventricle does seem to be somewhat enlarged, but they’re just going to keep an eye on it. The valves all look good.

The only thing that was bugging me was he said the left ventricle enlargement wasn’t troublesome because, as he put it, “I mean, it’s not like she’s not growing well.”  THIS is the problem with seeing a doctor who is not intimately acquainted with her case and history.  I blurted out a slightly exasperated (and incredulous) “But she’s NOT growing well.  Never has!” He looked surprised, and then when he plotted out her height and weight, he saw for himself, and had to agree that she’s very small for her age.  Of course her cardiologist and pediatrician know that, and if he’d bothered to really talk with them, he’d know this. I mentioned it to his intern during the exam, as well.  Of course, being that there are short and tall people on both sides of the family, it’s impossible to really tell whether it’s just genetics or heart related (until they fix the heart defects, and she either grows more or doesn’t), BUT he did say that he’d like her to see an endocrinologist to rule out any other causes, like thyroid or other glandular issues.  So we’ll probably set that up through her pediatrician sometime in the next couple months.

So for now, they’re just going to have her continue going to her cardiologist every 6 months instead of every 12, to keep and eye on everything. The “no surgery for now” is a praise for sure, but kind of frustrating, too, because I kind of wish these doctors would talk with each other and get on the same page. This is the second time I’ve had one doctor refer her for surgery, and be told it’s imminent, a year out at the most, only to be told by the other doctor that it could be years.  I just wish they’d get their stories straight before setting us up like that.  Ya know?

Anyway, we’re just going to focus on the reprieve, and be thankful to put if off a while longer.

Posted in Jade Updates | Print | No Comments »

June 2, 2009 by Brooke.

Just got back from Jade’s check up with Dr. Albrecht.  As expected the VSD has continued to get smaller, which is good. Valves also look good.  The pressure gradient in her right ventricle is up a good bit, though, which means those aberrant muscle bundles are growing closer together.  She’s not in any immediate danger, or having major health issues, but it is to the point that he feels the surgeon will most likely want to go ahead and remove the muscle bundles either this summer or next to prevent problems - particularly valve failure.  Dr. Albrecht’s hunch is the surgeon will want to go ahead and do it this summer, but we should know for sure sometime in the next week or so.  He said they may also want to have her come down for a more thorough Echo and maybe even a diagnostic cath, but again, we won’t know till after he’s talked to Dr. Peeler - the surgeon on her case.

Her weight has always been on the low side (has her own curve off the bottom of the growth charts, LOL), but her pediatrician noticed that her height curve seems to be leveling out. Not that she’s shrinking or anything, but her growth has decreased noticeably.  So we’re keeping an eye on that.  Could be that she’s just about to hit a growth spurt, but it bears watching, so she’ll be going back to the pediatrician for another well-child checkup in 6 months, rather than the normal year.  The cardiologist also found that was interesting.  Her particular defects shouldn’t really be affecting her growth at this point, but he said you just never can tell.  Different kids get affected different ways. The only way to know if it’s just genetics or her heart defect is to see whether or not her growth picks up after surgery or stays the same.  None of this is an exact science. LOL

Posted in Jade Updates | Print | 3 Comments »

December 2, 2008 by Brooke.

Well, just got back from seeing Dr. Albrecht.  Jade’s pressures look ok in the right ventricle.  I think the peak was 65 mm Hg.  He thinks the elevation last time (mean of about 50 mm Hg, peak of 85 mm Hg) was due to her pitching a fit at the time.  She did a lot better this time, with the crying.  She even stayed still for most of the EKG and Echo, with only a little fussing. She thought his mustache was hysterical this time around.

Anyway, I asked him about the pulmonary stenosis, and he said they may never truly know whether she has one until they either repair the VSD, or it completely closes, because right now the turbulence caused by the VSD (Ventricular Septal Defect) combined with the abnormal muscle bundles forming the DCRV (Double Chambered Right Ventricle) kind of mimic the turbulence across the valve you’d see with a PS.  His thought is she probably does have a mild PS, but it’s not of consequence right now.

The valves all look good - especially the aortic which is their primary concern, due to the VSD blood jet pointing right at it.  So that’s good. No change in the VSD, but it’s small enough that it’s not affecting her health.

But they’ve changed their tune a little bit on the muscle bundles and surgery.  Previously I got the impression it was a “wait and see” and “only if the pressure’s get too elevated in the right ventricle.” Now he’s saying it’s really inevitable, that they’d eventually need to be removed, to prevent problems, and that they’d probably most likely want to do it before she hits school age, since it has to be done anyway.  That way we wouldn’t ever have to worry about taking her out of school for the surgery and recovery.  Makes sense.  One less thing to worry about.

Apparently this isn’t something they like to wait until it’s a big problem. If it were to become a problem, of course, they’d do surgery immediately.  And they usually like to wait until the infant gets a little more size to them, but, now that it’s obvious she’s not going to “bulk up,” there’s no sense waiting too long to have it done.  She’s tiny, and likely to stay that way, now that we know it’s not heart related.

Not exactly what we wanted to hear, but we were resigned to her probably needing surgery at some point, so this is not shocking or alarming.  Just likely to be a bit sooner that we thought.  He mentioned possibly this spring, maybe a year, or year and a half down the road.  So I’m guessing, definitely by the time she’s 4, and quite possibly sometime in the next year.

My guess is they’d probably repair the VSD while they’re in there.  I mean, why wouldn’t you?  If they’ve got her chest open, might as well fix it all, right?

He says he  has a consultation with the pediatric cardiothoracic surgeon at UVA - probably Dr. Peeler, the one that was to do her original (cancelled) surgery - after each appointment, to get his take on how she’s doing and when he thinks might be a good time to go ahead and do the surgery.  And so Dr. Albrecht wants to see her in another 6 months, to make sure nothing has changed, and update us as to anything the surgeon might have had to say.

So unless the surgeon wants to do it right away, for some reason, we’ll just wait to see what we hear at the next appointment in June.

In other, more upbeat news, Jade is officially done with food allergies!  So that’s definitely a blessing and cause for praise!

Posted in Jade Updates | Print | No Comments »

October 6, 2008 by Brooke.

I could have sworn I posted about last month, but the proof is on the blog, huh. LOL

We took Jade for her allergy re-testing towards the end of September, and as we suspected her skin tests came back negative! Negative for eggs, oats AND milk. Hallelujah!!!

So we take her back at the end of the month to have an in-office milk challenge, and then we’ll schedule separate challenges for eggs and oats.  Basically the doctor just wants to satisfy himself that she isn’t going to have a reaction if fed those things.  Provided she shows no immediate reaction to those in office, and no further reactions from eating those foods at home, she will have officially outgrown her food allergies.

Praise God!

Posted in Jade Updates | Print | 2 Comments »

June 3, 2008 by Brooke.

Just got back from the cardiologist check up.

EKG looked great, even though she was screaming the whole time. By the way, can someone tell me, what is so scary about STICKERS? I mean that’s really all it is is stickers with little clips attached to them. She was excited about them until they were on her. And her Echo cardiogram (ultrasound of the heart) looked pretty good, too. Again, she was screaming and fighting, but the gradient/pressure values looked decent for her being stressed out. I think it was about 40, for anyone who is interested in that sort of thing, or knows what those values mean. In fact, he joked that it was like seeing her heart during her own little self-imposed stress test.

Then, as she got used to the wand and calmed down, he looked at her heart from below, where the anomalous muscle bundles are. From that vantage point, which is apparently a little more accurate for measuring the affect of the bundles on the chamber, even with her calmed down and just watching the screen, the numbers were higher - around 50 or so - meaning higher pressure in that right ventricle. Nothing alarming, but definitely higher, and we want those numbers to stay low.

The reason this could be of concern is that she has what’s called a “double right chambered ventricle”, meaning that those extra muscle bundles in the bottom part of her right ventricle, essentially divide her right ventricle into almost two chambers. As long as they sort of stay sort of separate and not all clustered together, she’s fine, but if they begin to grow together and cluster, it will create a more solid barrier and will increase the pressure in her right ventricle, and that would be bad because the right ventricle does not tolerate increased pressure well, and it lead to thickening and damage to the heart. IF he sees signs that the pressure is continuing to increase, she’d need surgery to remove the muscle bundles, and then continued follow up to insure that the bundles do not regrow.

So, all that to say he said that instead of seeing her in another year, he’d like to see her in 6 months, just to keep a closer eye on this and see if things look the same or any worse. If they look no different in 6 months, she’ll go back to being seen only once a year. If things look even a little worse, she’ll be seen more often, and we’ll assess things from there.

The only other thing he said they will keep a watch for is any leaking around her aortic valve. So far there are no signs of that, so it’s not something he’s really worried about, but because of where her VSD is, and because as tissue grows over the defect as it repairs itself, the blood actually squirts through it harder (again that whole “thumb over the garden hose opening” metaphor), and the the VSD is positioned very close to the aortic valve. IF she were to show any signs of developing a leaky valve, they would need to repair the VSD.

So, a decent report, nothing too alarming, but certainly not the perfect report we were hoping for.

He did say that should she ever require surgery, it’s MUCH less risky for a child of 4 or 5 to have open heart surgery than a small infant. That’s certainly a good thing to remember. Besides, we made peace with the idea of surgery way back when, so should it ever become a necessity in the future, we’re sort of already prepared for it.

So I guess we’ll see what’s what in December.

Posted in Jade Updates | Print | 3 Comments »

October 17, 2007 by Brooke.

I’ll need to back up a little bit, since I haven’t done an update in a while. At the last update, Jade had seen her allergist and, after confirming she has no allergy to wheat or corn, he had referred her to a Pediatric GI at UVA, to have her tested. Well they were pretty booked, so her appointment was not until September.

At that appointment he said he wanted to test her for Celiac Disease. This was something we’d considered and were hoping would NOT be an issue for her. Allergies you can grow out of. Intolerances to gluten, can also be temporary. Celiac disease means no wheat, rye, spelt, barley and oats, and sometimes even corn, for LIFE, or you risk severely damaging your digestive system. There’s no growing out of it. Needless to say, we were hoping this would NOT be the case for Jade.

Also, anytime you have a child with digestive issues as well as very poor growth, they test for Cystic Fibrosis. Now, chances were VERY remote that she’d even have that, having been screened as a newborn, as well as being part Asian (lowers the risk), so I wasn’t really super worried about the results of that test, but just the same, it’s another life-long ailment that would have had very serious ramifications for Jade. No matter how remote the chances are, there’s always that thought in the corner of your mind of “…but what if it’s positive? Doesn’t anyone ever really *expect* their kid to have something like this?” So I admit I was a little anxious to get the final word on that.

For the Celiac Test, they have to test the blood for the presence of gluten antibodies. Since I had been not giving Jade any wheat, they said that she’d need to be eating wheat every day for about a month for the test to even work. Can’t have gluten antibodies if you’re not ingesting gluten. Meanwhile he put forth another theory as to what he thought might be going on with her little system. He said that since Jade cannot have dairy or eggs, she is missing out on a great deal of fat and protein that is in most kid’s diets. The absence of those fats and proteins means there was an imbalance, and too many carbohydrates in her diet. So, he thought it’s possible that it might not be wheat, itself that she’s reacting to, but to just too many carbs and not enough fat. So he suggested giving her lots of wheat, while we prepared for the test in October, and meanwhile to put fat into EVERYTHING. They way he put it was, if you give her rice, put margarine or oil on it. If you give her a piece of bread, fry it in a pan first.

Of course my first thought was he was nuts. For one thing, this runs counter to what we’re told about our kids’ diets, in general. Not only that, but it’s not like we eat low fat at our house. It sounded really odd to have to add lots of fat to *everything* I give her to eat. After a while of thinking on it, though, it kind of made sense. I mean what does fiber do? So what would too much fiber do? Yeah. That’s right.

So we began our month of wheat and fat. Of course, as any parent of a toddler knows, having something they HAVE to eat is going to be an uphill battle. It was really hard to get her to eat the stuff we were pushing, consistently, but we kept at it, and found things that she really seemed to like, and what do you know? She had MUCH less digestive upset than I was expecting from re-introducing wheat, and started gaining weight more steadily. If she got wheat without as much fat (for instance, if she just refused to eat the fatty stuff, but at some of the wheat stuff) she had icky diapers.

When we went to the appointment for the tests, we were pleased to see that she had gained over a pound in the 4 weeks since we started adding the extra fat to her diet. Of course Jade reacted to both tests in true feisty Jade fashion. The CF test was a simple sweat test. Not in any way painful - just a couple little sweat collecting strapped sensors on both arms. But boy, you would have thought they were putting hot branding irons on her the way she fought and screamed and kicked. My goodness that girl is tiny but incredibly STRONG and strong *willed*. Of course, as you can imagine, the blood draw for the gluten antibody test didn’t go much better.

Well, I finally got tired of waiting and called UVA to see if the results were in. They just called back and told me that *both* tests came back normal. HOORAY!!!!

Now, they did caution us that sometimes kids this young will have a false negative, so if it comes to a point that she starts having issues again and adding more fat doesn’t seem to change it, we may have to have her re-tested, but barring that, she’s cleared to keep on eating wheat and other grains (everything but oats, which she’s allergic to).

Yet another testament to God’s mercy in Jade’s life. Not that a positive test would have meant He wasn’t good, but we’re just incredibly thankful that she’s been spared what would have been (in either case) a lifelong condition. And really, how awesome is it that the solution to her issues is to eat lots of yummy, fatty stuff? It’s actually been kind of fun figuring out new things to try that she’ll actually eat and like. Last night Alvin made homemade donut holes, and this morning, I made a treat for her out of Chex cereal, peanut butter, margarine and honey.

Of course, Alvin and I need to watch it, as WE certainly don’t need any additional fat in our diets. :-p

Posted in Jade Updates | Print | 2 Comments »

July 25, 2007 by Brooke.

Jade had her 6th and final Physical Therapy session today. Her PT, Robin, said that Jade has made good progress and now can hold her head up straight.  She said to come back if she starts having problems again, but she shouldn’t need any more sessions as long as we just keep encouraging proper head position at home, and making sure she sleeps on BOTH sides of her head.

Praise God - this could have taken so much longer than it did!

Now on to the Gastrointerologist next month.  Let’s hope that goes as quickly as this did.

Meanwhile Jade is constantly surprising us with all the new things she’s learning.  We found her in the kids’ bathroom sink the other day.  She’s apparently been watching her brother brush his teeth, and decided she’d like to try that, too.  We wondered how she got up there, so we put her back on the ground and videotaped her climbing back up: Little Miss Monkey

As you can see she lets nothing get in her way.  She has also figured out how to scoot chairs to where she wants to go.  Look out world, here comes Miss Jade!

Posted in Jade Updates | Print | 5 Comments »

July 10, 2007 by Brooke.

I know, I know, long time, no post. For a long time there wasn’t a whole lot to post about, sort of “no news is good news”, and then when some other stuff came up, I figured I’d wait till she had a few of her appointments over with, so I could do an all in one shot update.

Heart - Heart is doing fine. She had her appointment with the Cardiologist and he saw no change. No change is good. They really don’t expect the hole to close any more than it has (which was a LOT), so at this point as long as those “anomalous muscle bundles” don’t get any bigger and cause pressure to increase, she should be just fine.

Size - Still tiny, but it’s all good. Pediatrician says since her development is on track, if not advanced, and she’s eating fine, as well as nursing, she is not worried and thinks it’s just the size she’s meant to be.

Allergies - No real change, but we didn’t expect one this soon. Still confirmed allergies to oats, eggs and dairy, and all the fun that goes with that.

She does appear to have a sensitivity to wheat and corn - they upset her digestive system if she eats them. They don’t seem to bother her if I eat them, thankfully. The allergist said that he doesn’t think those are allergies, but symptoms of an underlying GI issue, and the negative allergy test (skin and blood) confirmed his suspicion that they are not allergies. So he referred her to to a Pediatric Gastroenterologist at UVA. Ironically it’s the same guy we had considered seeing when she was having the reflux issues (that were resolved with cutting out dairy). She won’t get to see him until September, as he’s apparently fairly booked.

Torticollis - This is our current hurdle. We’ve noticed since Jade was a baby that she had a tendency to hold her head sort of cocked to the side, and slightly rotated. At first I noticed it in her photos, as I put them in the albums, and thought it was just a cute quirk at first, but then as I noticed in more and more photos, I started to wonder what was up, and then I started to notice it just looking at her. Not *all* the time, but a majority of the time.

I had mentioned it at her checkups, but she had so many other things on her plate with the heart and concern about her weight, that it took a backseat. I finally demonstrated for her pediatrician, and really had her take a good look - especially from the back, where it would be most noticeable, and she agreed she saw it, too. She referred her to a pediatric Physical Therapist at RMH Rehab and the PT confirmed the diagnosis of Torticollis.

Torticollis (also called “Wry Neck”) is a condition where the muscles one side of the neck are shorter and/or bulkier. There are many possible causes, but it can often be congenital from some sort of injury to the neck during birth, where the muscle is torn or stretched and as the injury heals, scar tissue forms, causing the muscle to heal shorter and thicker, pulling the head to one side. I can look back through Jade’s photos and see it pretty much all the way back to the beginning, so I’m guessing it’s something that happened during her birth.

So, Jade is going to weekly Physical Therapy sessions, which she just *loves* (note the sarcasm). Her PT works on her neck muscles on the affected side, to help them become more relaxed, and we also (both at PT and at home) work on encouraging her to hold her head up straight. She has had 3 sessions (4th today at noon) and seems to be responding well. She *can* hold her head up, it’s mostly just a question of breaking that habit now and retraining those muscles.

Just to be safe, her pediatrician referred her to a pediatric Neurologist, to be sure there weren’t any other issues caused by the neck. Sometimes, especially if it has gone untreated, a child’s ears and eyes can begin to shift, to compensate for the tilt, and this can cause other issues. Another issue that sometimes comes up is something called Plagiocephaly. This is caused by the child lying on one side of their head more than the other (due to the neck issues and preference) and can cause the head shape to change. Sometimes Plagiocephaly can be accompanied by premature closing of the soft spots and skull sutures creating intercranial pressure as the brain grows and the skull has hardened and cannot grow.

As I suspected Jade has none of these problems. She does have some *slight* flattening on one side, but it’s so slight that the Neuro guy said she’d be a great advertisement for how awesome a child’s head can look after wearing a Plagio-helmet for remolding. Both he and her PT just suggested making she she sleeps on the other side of her head to prevent any further flattening. It’s absolutely un-noticeable with her hair. I am sure at least part of this is due to the fact that she is an absolute Wiggle Worm, and has been since birth. She never stayed in one place/position long enough to get any significant flattening. Of course I know the real reason is God, and I thank Him, because MOST kids get diagnosed and treated within the first couple months of life. Jade is REALLY late to be treated for this, and if there had been issues, some of them would have been too late to fix totally.
One thing that he did mention is that if PT doesn’t work, and we can’t get her to keep that head up, they may need to see if the issues could be caused by an actual twisting of vertebrae in her neck (another less common cause of torticollis). So as long as PT is working we’re going to assume this is NOT the issue, but if it doesn’t she may need to see the Neurosurgeon to have a CT scan done. I told him no offense, as he seems very nice, but I hoped we never had to come see him again. He agreed.

So that’s where we are. Heart is fine, allergies unchanged, PT going well, and waiting to see about the Gastro Intestinal issues. But I’ll take PT and GI issues over worries about open heart surgery any day. And really you’d never have any indication of what she’s dealt with to look at her go, go, go. She’s a little monkey. She can now crawl up into our dining room and kitchen chairs, and then crawl up on the tables. She’s a mischievous little girl and FULL of energy. I guess she has to be to keep up with her big brother. They’re a riot to watch together.

Thanks for all your continued prayers and well wishes!

Posted in Jade Updates | Print | 1 Comment »