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.