Echocardiogram Update

Well we received the report back regarding the Echocardiogram. This report considers the ASD 'large' . However, an Echocardiogram was done at Children's when Caleb was there for three weeks and the head cardiologist thought the ASD was small and almost closed. Therefore, we are going to send the newer Echocardiogram to Children's to get that same doctor to look at it and compare the two studies. As it has been explained to us, most ASD's close. If not, a surgery can be done to close the ASD. The surgery is not considered open heart surgery as they go through a vein in the leg up to the heart to repair the hole. As soon as we know more I will give an update.

10/20/06 Update

Caleb went for his Echocardiogram on Wednesday. We will not get the results back for awhile. Caleb visited Children's yesterday to see his Orthopedic surgeon and the hips look good. He has to go back in three weeks to get his hips x-rayed and possibly get out of the harness!!!!

The picture shows how well Caleb's mouthpiece is working. Both sides of the palate are touching and his nostril is lifting up. He is such a cutie!!!! He loves bathtime, we wonder if it is becuase he gets out of that harness for a little bit.

Long needed updated

Sorry to all for the delay in the update. Caleb was in the hospital for three weeks, then we were home for two weeks trying to get settled back in, and then I had to return to work.

Here is the latest. Caleb was taken to the hospital about two months ago due to poor feeding. The last feeding he took before we took him to Children's ER was 1cc (about a syringe full). Brian and I thought he was having feeding issues due to his severe case of acid reflux however, they did some blood work and it came back with a very low calcium level and a very high phosphorus level. Due to that they admitted Caleb. The docs said we were lucky that we brought Caleb in when we did or he could have had a life-threatening seizure. After further testing they found out Caleb has a hypoparathyroid, which now is being controlled by a special formula (which is very expensive) and by daily doses of Calcium and Vitamin D. The Vitamin D helps his body absorb the calcium, but it can drive up the phosphorous levels. Therefore, they did daily blood draws while he was in the hospital and the first two weeks he was home. We know get blood draws every other week. The only concern is the phosphorous is still high and you have to watch for kidney stones. The low levels of Calcium can cause fussiness which may have contributed to his feeding issues along with his reflux.

While Caleb was in the hospital they decide to get as many of the docs that we were scheduled to see Caleb as an outpatient. We saw the cardiology, and they did an Echocardiogram on Caleb and good news, they think the hole is closing nicely and like many other babies he has a heart murmur. The cardiology at Children's though did not seem concerned. Our pediatrician has scheduled another Echo for tomorrow to make sure the murmur is okay. Another doctor that saw Caleb was the neurologist, they went ahead and did the MRI to check on the corpus callosum. The tried the first MRI without sedation, but Caleb was WIDE awake and that machine is very loud so they scheduled and MRI with anesthesia. They could not do a sedated MRI as Caleb does have the cleft lip and palate and he is considered a 'high risk' patient due to the airway. The MRI was completed and Brian and I were broadsided by what we found out. They are still debating on whether or not Caleb has a corpus callosum. Some think it isn't there and some think it is, but it is just thin due to water on the brain they found. He has a significant amount of water on the brain and enlarged ventricles. In addition, his cerebellum (the part of the brain that is responsible for your motor skills) is smaller than normal and is sitting low into the spine. Yes, that is a lot. But you would never know by looking at Caleb. He is our little fighter. They have scheduled another MRI for October 30th to check on the water. If the water has increased they will shunt him to help the spinal fluid drain. There are a lot of 'don't knows' when it comes to the brain issues. Is the cerebellum small due to the excessive amount of water? Is there extra water due to the small cerebellum? Is there a block where the spine meets the cerebellum. All of these will be checked as best as possible with future MRI's. In addition, there is some concern with the folds of the brain. One doc said 'they just don't look right'. The one neurologist made some comments to Brian and I that were so uncompassionate I do not even want to repeat them. Hopefully we will know more after the MRI on the 30th and I will let everyone know, as soon as I can, what we found out regarding that MRI. We have started working with in home therapist from Easter Seals to help Caleb developmentally. However, all the therapists have said that he is 'on target' right now with his milestones. Which is great news.

Genetics did do some further testing and all came back normal. They do believe that Caleb does have some sort of 'midline' (affects the middle of the body) syndrome. But that are not sure what it is. Brian and I do not think it is beneficial for Caleb to go through any further genetic testing at this time as it doesn't matter what he has, he is Caleb and that is all that matters.

Caleb did have a neck x-ray, CT scan, and a Cookie Swallow (modified Barium swallow) to make sure nothing else was contributing to his feeding issues. All came back okay. It was later deduced that his severe case of reflux was effecting his feeding. They are going to check his acid levels in his esophagous when he has his surgery on his lip in nose in January. They do believe his case of reflux is severe. He is on Prevacid, Zantac, and Reglin (helps his stomach empty into his bowel quicker so there is less to reflux.

Hips-GREAT NEWS He got a checkup three weeks ago and it looks like Caleb may get out of his harness, at least during the daytime, in three weeks. WE ARE VERY EXCITED. We hope this will help with the reflux also.

The surgery for his Cleft lip, nose, tubes in ears, and esophagial scope is scheduled for January 18th.

There was also some question as to if Caleb had a spleen an ultrasound was done last week and he does, phew!!!!

I will update this blog with more info tomorrow, as I am sure there is stuff I forgot and I will hopefully have the results of his Echocardiogram.

Thanks again to everyone for your thoughts and prayers.

8/17/06 Update

Once again we have an update and it is good news!!!!
We went to Children's yesterday to get Caleb's mouthpiece and nosepiece adjusted, the palate and the nose seem to be molding nicely. The doctor's are really happy with the progress. In addition, while we were there they let us know that Caleb's chromosome test came back normal AND the test for the VCFS came back negative. This is all great news!!!! We are very excited. We will talk about the results in greater detail when we meet with the geneticist next month.

8/11/06 Update

Hello all, another update on our litle prince. We visited Children's on 8/10/06 and have the following updates:

1. Orthopedics: The orthopedic surgeon did not feel Caleb's hips popping out of socket when he rotated them, very good sign. Therefore, Brian and I are allowed to remove the harness every couple days to give Caleb a bath. We go back in two weeks to check and see if the hips are still in socket. The doctor did tell us that they can just as easily slip out as they slip in. So we are keeping our fingers crossed.
2. Craniofacial: More good news...the cleft of the palate continues to move and the cleft of the lips seems smaller. Caleb also got fitted for the nose piece that was added to the mouthpiece that will lift the nostril while at the same time press down on the higher side of the palate. In addition, Caleb is gaining weight nicely, the doctors don't seem as concerned anymore regarding his weight. He weighed 8lbs. 10ozs. at this last visit which means he gained 9 ounces in a week.
   
3. Bloodwork/Genetics: Caleb's blood had to be taken again (inconclusive previous results) for chromosome testing and for VCFS. The chromosome testing is being done to see if something genetic caused all the issues (heart, cleft, brain, etc.). In addition VCFS, Velocardiofacial syndrome, also known as Sphrintzen syndrome, is the syndrome most commonly associated with cleft lip and palate. Aside from cleft palate, there are up to 184 other anomalies commonly associated with VCFS, including heart defects, unique facial characteristics (elongated face, almond-shaped eyes, small ears, wide nose), speech and feeding problems, middle ear infections, and learning difficulties. Not all anomalies are present in the child, nor is any one anomaly present in all cases. The features with which the child is born do not get progressively worse over time. The results of the bloodwork usually take 3-4 weeks. We will go over these results with genetics during our appointment with them.
   

Caleb's acid reflux still seems to be bugging him somewhat, still spitting up and uncomfortable when you lay him flat, so we will talk about that with the pediatrician on 8/15.

8/7/06 Update

Picture - Caleb and Daddy at story time.

Caleb is responding well to story time. He is following voices and keeping his eyes open. Great signs in regards to his brain development.

8/7/06 Update

Picture - Caleb in his carseat ready to go to the Urologist and show them nothing is wrong.

Today we visited the Urologist at Children's. All seems good!!! Caleb will go through one more ultrasound to double check the ultrasound performed after birth at Allegheny Hospital.

8-1-06 Update

Pictures: Left - Caleb showing off his mouthpiece. Below - Caleb sleeping in the chair at the craniofacial office after getting his mouthpiece adjusted.

Well another update for the little one

We went to the Orthopedic Surgeon and one hip is in and one hip is in but popping out. The hip that is popping has the Orthopedic Surgeon somewhat concerned. Therefore, Caleb has to stay in his harness for another week 24/7. . . Needless to say those onesies get thrown out when he goes to his weekly checkup and gets a bath and a harness check. The hip will be checked again on 8/10 to see if it is any better. After the ultrasound we will see the orthopedic surgeon to get the results so I will submit a new post once we know anything.

Caleb also had his mouthpiece adjusted again (showing it off in the picture), the palate is moving nicely.

Caleb is already eating cereal to help his acid reflux. He is dealing with that well and not spitting up as much and gaining weight better.

First Update

Picture - Caleb with Dr. Thomas, the Dr. who delivered him.
The picture was taken when Caleb was about 3 weeks old as he
had to go through a bunch of 'checks' after he was born and
we couldn't take any pictures.  Dr. Thomas is a wonderful doctor
and person.


Well all it's official Caleb is here.  We welcomed him into the world on July
12, 2006, at 10:21 a.m.  He weighed 7lbs 13oz and measured 19 inches long.  What
a blessing he is!!!!

He has already proven to be a little fighter!!!  We have a wonderful team of
doctors working with us at Children's Hospital in Pittsburgh.  He are some
updates:
1.  They did another EKG on his heart once he was born and the hole in the
heart and the thickening of the septum has healed itself.  He does however, have
another hole in his heart that was cannot  be detected during the fetal
ultrasound, however the cardiologist is optimistic that it will close on it's
own, if not, it will not require surgery to be fixed. There are other methods
that can be done to heal this hole if needed.  We will follow up on that in four
months.
2.  He did not require breathing assistance as it was discussed that it may be
a possibility.  He has already been fitted with his mouthpiece to start molding
his hard palate into place.  He has really picked up on his eating and has
gained back his birth weight.  He should have a surgery somewhere around 3-6
months to fix his lip and nose and then his hard palate a couple months later
and finally his gum and jaw will be repaired later on in life.
3.  We did find out after birth that he does have severe hip dysplasia that is
being treated at this time with a harness that he currently has to wear 24 hours
a day 7 days a week.  However, we are optimistic that this Thursday the
orthopedic surgeon will show us how to take the harness off so we can bath Caleb
at least every other day.  The hips have started to go back into socket which is
very good news based upon how severe the hip dysplasia is.
4.  There was some concern at birth regarding Caleb's eyes however all is
okay. We will check up with the Opthomologist in a couple months.
5.  Caleb did not pass his hearing test at birth, after further testing at
Children's they believe he has fluid in his ears and will require tubes, common
with babies with cleft lip and palate.  The tubes will be put in his ears when
they do the surgery on his lip and nose.
6.  They were somewhat concerned regarding his kidneys at birth, an ultrasound
was done and came back normal, we will meet with a Urologist for a followup at
Children's.
7.  As far as the Corpus Callosum, the part of the brain that is missing,
another MRI will be done on him to evaluate it again to see if it is a partial
agenisus or a complete agenisis.  Nonetheless, Caleb has been responding well to
sights and sounds since birth, so we are very optimistic that the agenisus will
not effect Caleb.
There are some other visits we have with other specialists at Children's as
they want to fully check Caleb, but as you can tell he is doing great.  Again, I
cannot thank everyone enough for your continued support, love, and prayers.
Thank you so much!!  I will continue to keep everyone up to date on the
developments of his doctor's visits.