JD update from the weekend

[Guest guest]

is still doing okay during his recent hospitalization and it looks

like he might be allowed to come home in the near future but we are not sure

yet. Below is a list of several things that have been done since Friday in

regards to JD.

1). An EEG or electrical encephalogram was done on JD Friday to check the

status of his brain and to relate the sleep study done to this test. The EEG

showed normal brain activity and in fact JD went to sleep during the test and

that allowed his mother to speak to him while he was sleeping. At the moment

she started speaking to him, the brain waves being measured on JD altered and it

appears that JD is picking up sound like we have always suspected. One

important thing that was picked up Friday was the presence of some altered

spikes

in JD's brain waves which could indicate the presence of very mild seizures

going on with JD. Let me stress these seizures have been diagnosed as being

very

mild in nature and the doctors have already told us that this is treatable.

What may happen is JD will be put on medications to help control and get rid

of this problem. Again let me stress, JD is fine and these mild seizures are

not noticeable and doctors have said that they appear to be treatable if

needed.

2). JD's feeds are back to being run over an hour. He has had no vomiting

or spitting up issues with the new feeds. He seems to be a very different

little boy that isnt wretching or coughing. His symptoms he was having have

disppeared with new feeds being initiated and in fact his stools are now normal

and

not watery. Dr. Andersen is pleased with this and wants to eventually get JD

to the point where he is receiving his feeds in fifteen minutes. So it

appears the feeding issue has been ironed out.

3). Both Dr. Gelfand and Dr. Copenhaver reviewed JD's MRI of the chest and

did a swallow study on JD Friday to look at an area of his esophagus that is

narrowed. The swallow study went well and Dr Gelfand and Dr. Copenhaver feel

comfortable with proceeding with JD learning to eat by mouth and dont expect any

troubles. Also, they believe if they have to treat that narrow region of his

esophagus then they will probably just need to dilate it with medications to

expand it in size.

4). The biggest news of the weekend was from Dr. Price his neurosurgeon.

Dr. Price reviewed JD's sleep study, his MRI of his head, and his EEG. Dr.

Price remains confident that JD does not need a VP shunt to alleviate pressure

on

his enlarged ventricles in the brain. Dr. Price has confirmed her diagnoses

of Ventriculomegaly and has ruled out Hydrocephalus completely. The chances of

JD having to be shunted are now at 5% or less and Dr. Price wants to

reevaluate him with the possibility of clearing him completely from her care in

1

year. The ventriculomegaly remains unchanged. JD's head or skull is growing at

a

normal rate and JD's brain is holding its own. We do know that JD has a

little smaller brain than most toddlers and there are some small areas of JD's

brain that are atrophied but it is believed that JD has normal brain function

and

is developing but due to his medical issues he is developmentally delayed but

catching up at his own rate. Dr. Price also feels that JD does not have

Central Sleep Apnea or apnea that results from the brain forgetting to breath at

periods during sleep. Dr. Price feels that JD has obstructive sleep apnea

which is easier to treat. So that was the best news of all. Again we will see

Dr. Price in 1 year.

5). Dr. Copenhaver and Dr. Gelfand (pulmonologists) feel that the time is

right to possibly let Dr. Brown do Choanal Atresia repair #1. They both are in

agreement that opening the nasal septum and opening the atresia will help JD.

They will report their finding and feelings to Dr. Brown and we will move

forward with this. Hopefully, JD will get the repair of the choanal atresia in

mid March.

I realize that this is alot of information but hopefully alot of these little

medical issues have been ironed out. JD is doing well under closed

observation and hopefully will be home soon.

We will update you when we know more.

May the Grace, Peace, Love, and Mercy of our Lord Jesus Christ be with each

of you.

, Mandy, Olivia (16 months and walking) and (cHArgEd 16

months and sitting unassisted)