Stories

Ocotber 19th, 2006~ 10:37pm

Charlie

January 04, 2004 ~ October 19, 2006

Berma got a call this morning about a dog that was on the thruway.  This dog had been hit by a car and they needed to go identify the dog to see if it was Charlie.  I didn't post about it earlier, but Jay's mom(Berma) had a rot/lab named Charlie.  Our dog is from the same litter.  Last Friday the dogs somehow got out and Lilly and Charlie went missing.  Lilly came home early the next morning but Charlie never did.  He was spotted on the thruway yesterday.  They found him this morning.  Charlie was born 5 minutes before Berma's dad past away.  He was very special to her and they had a bond that was beyond amazing.  He was a good dog and a great companion.  He will be missed.  Berma~ I cannot even express the way my heartbreaks for you.  I love you.

JD has to go to the doctors again tomorrow.  He still has poops that are nothing but liquid, and now he keeps choking.  I think he has reflux. Hopefully they will give us some answers, so that we both can get more sleep than we are getting. 

I will keep everyone updated.  Please keep Berma in your thoughts and prayers.

Hugs

Christina

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October 17, 2006~ 9:40pm

Well JD had his EEG and it actually went very well.  I was worried because they needed him to be asleep for part of the test and sleeping is not one of JD's favorite things to do.  But, I managed to get him to sleep right away.  He stayed asleep long enough for the tech to get the reading and then he woke up crying.  I had to leave the room for the strobe light part of the test.  I have a stress-induced seizure disorder.  The light won't always cause be to have a seizure but I get really aggitated and I can't stand it.  So, Berma went in with him and he was a trooper.  The tech said that JD was one of the best babies she has ever had!  I wish I had gotten a picture of his head all bandaged up to protect the wires but I didn't.  I did take a few of his hair when we got home. She wasn't able to get all the glue out.

We did get some good news.  JD's MRI is showing no brain damage at this point!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  However, they may re-take the test around his first birthday.  Sometimes the damage isn't clear until they are older and their brains aren't growing so quickly.  Let's hope that the test doesn't change!

Well, it has been a long day and I am tired.  I will post again in a few days.

Thanks for taking the time to read.

Christina

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October 14, 2006~ 9:45pm

I received this in my e-mail this evening and I would like to share it with you all.

The smell of rain



A cold March wind danced around the dead of night in Dallas as the doctor walked into the small hospital room of Diana Blessing. She was still groggy from surgery.


Her husband, David, held her hand as they braced themselves for the latest news.
That afternoon of March 10, 1991, complications had forced Diana, only 24-weeks pregnant, to undergo an emergency Cesarean to deliver couple's new daughter, Dana Lu Blessing.
At 12 inches long and weighing only one pound nine ounces, they already knew she was perilously premature.
Still, the doctor's soft words dropp ed like bombs.
"I don't think she's going to make it," he said, as kindly as he could.

"There's only a 10-percent chance she will live through the night, and even then, if by some slim chance she does make it, her future could be a very cruel one"

Numb with disbelief, David and Diana listened as the doctor described the devastating problems Dana would likely face if she survived.

She would never walk, she would never talk, she would probably be blind, and she would certainly be prone to other catastrophic conditions from cerebral palsy to complete mental retardation, and on and on.

"No! No!" was all Diana could say.
She and David, with their 5-year-old son Dustin, had long dreamed of the day they would have a daughter to become a family of four.
Now, within a matter of hours, that dream was slipping away
But as those first days passed, a new agony set in for David and Diana. Because Dana's underdeveloped nervous system was essentially 'raw', the lightest kiss or caress only intensified her discomfort, so they couldn't even cradle their tiny baby girl against their chests to offer the strength of their love.
All they could do, as Dana struggled alone beneath the ultraviolet light in the tangle of tubes and wires, was to pray that God would stay close to their precious little girl.
There was never a moment when Dana suddenly grew stronger.
But as the weeks went by, she did slowly gain an ounce of weight here and an ounce of strength there.

At last, when Dana turned two months old. her parents were able to hold her in their arms for the very first time.

And two months later, though doctors continued to gently but grimly warn that her chances of surviving, much less living any kind of normal life, were next to zero, Dana went home from the hospital, just as her mother had predicted.
Five years later, when Dana was a petite but feisty young girl with glittering gray eyes and an unquenchable zest for life.
She showed no signs whatsoever of any mental or physical impairment. Simply, she was everything a little girl can be and more. But that happy ending is far from the end of her story.

One blistering afternoon in the summer of 1996 near her home in Irving, Texas, Dana was sitting in her mother's lap in the bleachers of a local ball park where her brother Dustin's baseball team was practicing.
As always, Dana was chattering nonstop with her mother and several other adults sitting nearby when she suddenly fell silent. Hugging her arms across her chest, little Dana asked, "Do you smell that?"

Smelling the air and detecting the approach of ! a thunderstorm, Diana replied, "Yes, it smells like r ain."
Dana closed her eyes and again asked, "Do you smell that?"

Once again, her mother replied, "Yes, I think we're about to get wet. It smells like rain."

Still caught in the moment, Dana shook her head, patted her thin shoulders with her small hands and loudly announced,
"No, it smells like Him.

It smells like God when you lay your head on His chest."

Tears blurred Diana's eyes as Dana happily hopped down to play with the other children.

Before the rains came, her daughter's words confirmed what Diana and all the members of the extended Blessing family had known, at least in their hearts, all along.

During those long days and nights of her first two months of her life, when her nerves were too sensitive for them to touch her, God was holding Dana on His chest and it is His loving scent that she remembers so well.


I hope that JD was being held by God during his first weeks when we couldn't hold him.

Good night

Christina

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October 13th, 2006 ~9:31pm

We have been to Strong three times in the last week.  Friday we went for his seizures, Monday he had his MRI and I had to take him up yesterday because he has horrible nasty poop that smells really really bad.  They don't think that he is sick because he does not act sick.  He is a little more gassy than normal because of the gas used during his MRI but he isn't acting any differently.  They are going to notify his GI doctor.  They may have to cut the dosage of his meds or change his formula again.  Poor baby can't sleep good at night because he is always needing a new diaper and new clothes.  I hope that they can get to the bottom of things fast.  We have an EEG on Monday.  I hope they can solve the seizure problem too.

Thank you for all the warm wishes.....we will get through this...we are strong.

Christina

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Ocotber 11th 2006:

1:40pm~ Well, it has been a very busy weekend here.  As you are all aware, JD's benefit was this weekend.  We didn't get as many people as we had hoped, but we did have a very wonderful suprise.  A lady that didn't know anything about the benefit before Sunday came and read all of the information that I had about RH disease and all that JD has been through.  She came over to me with tears in her eyes and handed me a check for $500.00! I started to cry and told her that she didn't have to donate this amount of money.  She said that she wanted us to have it!  She didn't even buy a dinner.  All in all, the people that were there had a good time and for that we are greatful.  Everyone oogled over JD...I hardly held him!  He was loving it! Thank you to all that came.  It meant everything to us.

JD had his MRI this morning.  I had to be up at 4am so that we could be on the road by 5am.  He was the first scan of the day because he couldn't eat after midnight last night.  They had to put him under so that he would lay still enough.  They didn't want to put a full air tube down his throat because he has a cold and it could cause complications so they used a new divice that just goes in the back of the throat.  We were waiting in the waiting room and we could hear them bring JD to recovery.  HE WAS SCREAMING!!!!!!!!!!!!!!!!!!!!!!!!!!!  But once he got some food he was fine.  We were in recovery for 1/2 hour just to make sure everything was ok and then we got to leave.  We should have the results on Friday. 

Out of every single test that JD has had done this once scares me the most.  The answers of this test make me scared.  I know that I can deal with whatever they are but having to wait will kill me.  I am not a patient person by nature.  You know, I was watching JD sleep last night and this overwhelming sense of sadness came across me.  I don't know what triggered it but I just became sad.  Not for myself but for him.  Most babies learn something new all the time.  They take in the world around them and you can notice that they are learning about their enviroment.  JD has stayed at the same level for the last three months.  Part of me wonders if this is all that he will ever have.  A smile now and then just to let you know that he is happy.  I felt bad for feeling bad if that makes sense.  I should just be thankful that he is alive and I am.  Really I am, it is just this is not what I had in mind for my child.  What if I can't be all that he needs me to be? 

This is such an emotional rollercoaster.  I do not wish this upon my worst enemy. This is wrong and this isn't fair.

Christina

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More bad news:

JD has started to have seizures.  They are not bad actually, he just stares and this weird thing happens with his eyes.  I took him to the doctors today because when I called the office they wanted to see him right away.

He also has a really nasty cold and all the snot is causing him to choke.  I have to beat on his back so that he can breath again.  That is really scary.

They were going to admit him and do a video EEG, but since it was Friday they decided that we could wait until early next week....a date has not been set.

So, we are home and JD has been resting for the day.  Since he started these seizures, he has been rather sleepy.

I am not too upset by these new symptoms because I expected it.  Seizures are common among children that have this disease or type of brain damage.  We are just to keep an eye on him...there is really nothing else that we can do right now. Except wait.

I'll keep updating

Christina

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We got the date:

I got a call from his neurologist yesterday, and his MRI has been scheduled for October 11th.  JD will be sedated so that he will lay still during the test.  Can we say nervous?  I shouldn't be nervous it isn't happening to me, but the results of that test may or may not change our whole lives even more than they already are. 

Brain damage.  This is something that I never even thought about while I was pregnant.  I had no major complications with Jordyn and I expected the same with JD.  There are certain areas of the brain that are effected and those are the areas that they are going to be looking at.  She wants to try and see if she can see the nerve in the ear, to see if the nerve is damaged, but it is difficult to see it in babies this young.  We may not even see anything on the MRI.....the ares that are effected may not show up until he is older.  I know that he has some sort of brain damage.  He is no where near where a almost 4 month old should be, but you know what.....it is ok!  I have come to terms with it and no matter what we can deal with it. 

The benefit is in 3 days and people are running around like chickens with their heads cut off....LOL  It is kinda funny to watch. LOL

I hope that I meet a lot of people who read this webpage.  So many of you have prayed for JD, that it is time you get to meet him personally.  Just a warning....he can be crabby....so if he cries when you are looking at him.....don't take it personally, that is just the way that he is.  He thinks everything is about him(which it is by the way)LOL.

Christina

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A Rainy Wednesday:

So I guess we are in for some thunderstorms tonight.  How ironic is that?  We had like 2 the whole summer and now that it is fall we have one! At least there is no snow...yet.

We have had such an outpour of love and support for JD since the benefit was offically announced that I am amazed.  People are so willing to help a family that they don't even know.  I never expected it.  It is very nice.

Have you ever had an idea come across you and in your heart you knew that it was the right thing to do?  This happened to me the other night while I was reading a forum I belong to about liver problems.  There are so many families out there that have a difficult time with expenses while their children are in the hospital.  There is very little funding out there that helps these families and it is in desperat need.  When one has to worry about the health and well being of their sick child, they should not have to worry about money too.  I want to do something to help, so I have begun researh on how to start a not-for-profit group specifically for this purpose.  From what I can tell, it will be a long road that won't be easy, but I just can't stop thinking about it.  Anyone out there have any suggestions for me?

Days here have been busy and hectic but I don't know any other way, so it doesn't bother me too  much.  Although sleep is something that I don't get a lot of.  JD is up 4 times a night still, after getting the boys bathed and tucked in, dishes, picking up the house, putting away laundry,and having a little time to relax it is after one in the morning.  I have trouble falling asleep because my mind is always on the go.  Coffee is my lifesaver!

JD seems to be doing better on his new formula although he spits up a lot of clear fluid.  It will even come out of his nose.  However, he is down from drinking 48 ounzes a day to 32 ounzes a day so that is good.  He was eating way too much, but not anymore. The spitting up is new, he usually didn't do this.  He has a little reflux problem but it wasn't a cause for concern.  I wonder if they will have to change the formula again.  I hope not, it took me a week to get him used to the new stuff.

Post again soon.

Christina 

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For those who have asked:

JD's story made the Finger Lakes Times today and since then the web site has gotten a lot of attention. This has it's upside and it's downside.  People always have to be talking even if they have nothing to say.  Brenda wanted to advertise in the paper about the benefit.  Most people do that sort of thing when they are holding an event like this.  When she called about advertising one of the reporters got reading JD's webpage and asked to write an article about him. Brenda agreed and Brian Lothridge wrote a beautiful article about JD and his benefit.  Brenda also posted this information on FingerLakes1.com to inform more people about the benefit and some have some questions that I would like to take the time to answer.  Just so there is no confusion.

I was told to not even say anything.  That there are mean people out there that just want to cause hurt, but it is your money and you have a right to know where it is going.

WHAT IS THE MONEY GOING TO BE USED FOR?

JD goes to Strong Hospital up to 3x a week until they have all of his medical conditions under control.  Early intervention is the best way to prevent any future complications.  JD does have medicade through his SSI, however they no longer offer the service of transportation to and from appointments(we already checked on this).  They will take you as far as the Eastview Mall and then you have to pay for a bus to the hospital. When JD has an appointment, it takes us one hour to get there and that is if the traffic isn't bad.  We are in his appointments for at least an hour, and then we have to wait at the lab so that they can take 3 tubes of blood from him.  Then, we have an hour drive home.  These long days require funds to  supply gas back and forth, parking at the hospital, toll money both ways, and food.

Medicade DID NOT COVER JD's full stay in the hospital.  So far we have a bill for $815.00 for some testing that is not being covered.  I have checked into medcaide and am waiting to hear back from them reguarding this issue.

We were unprepared for JD's early arrival. We were even more unprepared for the daily jouney to and from Strong for those three weeks and the journeys that follow now. We got really behind on our bills they just started to add up and we could not catch up. But hey, "tough times never last, tough people do."

I guess that Jason and I could both go to work full time and not be there for our child when he needs us the most, but I am not going to do it. We have both been actively looking for work, but how many employers are going to give you three days a week off so that you can take your child to the doctors?  They might as well hire someone who they can depend on. That is all I am going to say about that.

DID YOU HAVE EARLY PRENATAL CARE?

I found out that I was pregnant with JD when I was only 6weeks along.  I went to EVERY doctors appointment that was scheduled for me, I completed EVERY test that needed to be done. I DID EVERYTHING THAT I WAS SUPPOSED TO DO! I wanted to blame myself in the beginning but this was no fault of mine.  I would never hurt one of my children.  They are the sunshine in my life.  They are the reason that I am alive.  They are my heart and my soul and I would be devestated if anything happened to either one of them. I am not a dumb twit, and I do know a thing or two about a lot of things.  I do know to get prenatal care. This is all I can say about this topic.

To whoever wrote those cruel and hateful comments on FingerLakes1, I hope that this has answered some of your questions.  Maybe next time you go off on some one that you don't know you should consider all the facts before you open your mouth. 

Christina

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Encephalopathy:

This is the diagnoses that he was given today at the neurology
apponitment. WHAT DOES THIS MEAN????? I know the definition but it
sounds really bad. In all of my research on kernicterus and rh
disease i have never come across this word. Hell, I can't even
pronounce it.
I really like the doctor and she was very honset and straight
forward with us. She said that JD's team of doctor's were keeping a
close eye on him and that they were concerend and that they really
don't know what to expect as he gets older. She doesn't like to
tell the parents of babies under 6 months old a definite diagnoses
because it could change.
He is going to be scheduled for and MRI. She said that they
probably won't be able to tell if the high billi caused his hearing
loss because it is hard to get a good picture of the nerve in babies
his size. However, they will be able to look at most of his brain
and tell us if there is any damage. They need him to be completly
still so he will be under heavy sedation while being monitored. She
warned us that there could be complications with the sedation but
the risk was small.
She did note the tightness in his muscles and the fact that he looks
more to the right than the left. She agrees that he can't hear but
believes that he can see although he has trouble tracking objects.
But she did see some good things. He holds his head up when he is
on his stomach and he eats and is gaining weight. He has tightness
in his fists, but he can open his hands too.
She wants JD to have an eye test that is more accurate than the EEG.
She will sit down with his GI doctor and his regular peditrician to
discuss his care.
So, the news wasn't all that bad, but it wasn't all that good. It
is better than I thought. For that I am greatful!

Christina

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Busy Busy Busy:

That is what I am these days.  I have had to start a daily list of things to do otherwise I just plain forget to do them.  Jd has so many appointments that I have to write them down like 3 times so that I remember.  I think they call this "mommy brain".  If that is the case then I have a severe case! HaHa.

Well, JD is no longer on the formula the doctor changed him to.  He REFUSED to eat and he was crying from hunger.  I went one whole day with him on it and when he refused to take his medication I made him a bottle of the old stuff.  Little stinker ate 8ozs and then went to sleep!  I called the doctor to see what I should do and she suggested another formula.  It is the same type, a hypoallergenic, so most of the protiens are already broken down and it will be easier for him to digest.  The new one is called almentum.  It is made by the same makers of similac.  She suggested trying half and half at first so he can adjust to the taste.  We have to let her know how it goes tomorrow when we are up there for neurology. He has only had one bottle of it so far but he drank it at least.

Well tomorrow is probably the one appointment that I would rather not have to go to.  They won't tell us that he has cerebal palsy tomorrow but they could mention it. We probably won't know for sure until he is closer to a year old.  His regular ped notes the stiffness and so does his PT teacher.  I am trying to prepare myself for the worst.  However, I tried to prepare myself for the hearing and I was a total wreck when they told me the news. I am telling myself that I can handle this. No matter what I can handle it but when it comes down to it I am only human and this has been one emotional roller coaster after another.  Sooner or later you think that I would break.

The Finger Lakes Times (our local newspaper) is going to write an article on JD and the benefit.  I couldn't believe that they would want to write a story about us but if it will raise awareness that this sort of thing still happenes(4,000 babies a year are effected) the story will be worth it.  The reporter asked me what I wanted most out of the benefit and that is what I want.  I want people to be aware that this still happens and that it is almost 100% preventable!

Well JD will be waking up soon for a feeding.  I love the nights, he is the most cuddley at night and he lets me hold him the longest right after his belly is full!

Christina

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We finally got good news:

JD will be off of the phenobab in two days.  We have to decrease his dosage for three days and then we can stop giving it to him.  YEAH!!!!!!!!!! However, they did increase his dosage of Actigall.  Instead of getting 3ml 2x a day he is getting 8ml 2x a day.  His direct billi is down to 1.8 so the increase in dosage  will help to further reduce the number.  His liver is still enlarged but that too is going down.

We also had to switch his formula.  JD has blood in his stool, and she is afraid that he has a milk-protein allergey so he is now on Nutramigen.  She is hoping that the change in formula will take care of the blood. JD doesn't like the new formula.  But, it must taste different so it will take some time for him to adjust to it.  It does seem to keep him full longer or maybe he just doesn't like it so he refuses to eat unless he has too. :) It has only been one day but he hasn't had as many stools as he usually does and he seems in better spirits so maybe it will work!  Fingers Crossed!

We have to see her again in 6 weeks and she will decide if the formula is working and to run more labs just to make sure that his numbers are ok.

I actually left the hospital yesterday with a smile on my face.  That hasn't happened in a while.  Hopefully we have the same result on Friday when we visit with neurology.

Christina

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I saw the light:

Well, I didn't see a light really, but I did have a moment of clarity last night.  I was feeing JD his nightly phenobarb and actigall  and after he was done I laid him on my chest to try and entice a burp from him. He won't usually lay that way on me.  I think that it hurts his stomach but he was actually laying there peacfully.  I started to cry.  Not hard, but I had a few tears on my face.  JD lifted his hand and put it onto my face and just kept it there.  I knew at that moment that no matter what everything was going to be alright.  No matter how bad things got, I had my children and I had Jason and that is all that really matters.  Everything else is just "extra".

It is amazing how much better I feel today.  The sun wasn't shining in the sky but it seemed sunny to me.  For the first time in a long time I knew that it was ok.  What a great feeling.

Christina

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I have no title for tonight's post.  No words seems to describe how I am feeling tonight.  We had JD's hearing test this morning and I am afraid that we do not have good news.  JD cannot hear any pitch in either ear.  They are diganosing him with severe hearing loss.  He has to go back in three months to have the test re-done.  At that time they are going to fit JD with hearing aids, although they may not be effective and then we will have to discuss other options.

I was expecting the worst but had high hopes for the best.  My heart aches for him.  I just want to take all the pain and all the problems away. I want to make everything all better.  I feel as helpless as I did when he was in the NICU.   

Our whole family is going to learn sign language.  In fact, Jordyn knows some signs because he has a little friend that signs to communicate.  Teaching him will be easy.  It is us adults that may have a harder time.  I tried to learn in high school and I just never caught on to it.  I do know a few signs not many though.

Well, Monday we go to the pediatric GI specialsit.  Hopefully she won't have bad news for us too.

Thank you to all of you who still check up on us.  We know that you are still praying for our family and it means the world to me.

Love,

Christina

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I upgraded the site:

I was finally able to upgrade JD's site. It may change from time to time just so everyone is aware.

Nothing really new to report here.  Just taking everything one day at a time.

I still haven't heard anything about that job, so maybe I didn't get it. I applied to two more today.  Hopefully I hear something soon.  We are so behind with everything that has been going on it is going to take us months to get on the right track again.

I will update after JD's hearing test on Friday

Christina

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I had a job interview today:

It has been quite a long time since I have had to do an official interview, and I was so nervous!  But I have a good feeling so hopefully I will get the job!  I really don't want to go back to work but there is just no way around it.  JD will be in good hands and I just have to accept that.

I got this in my e-mail the other day.  Just thought that I would share.

As ham sandwiches go, it was perfection: a thick slab of ham on a fresh
bun with crisp lettuce and plenty of expensive, light brown, gourmet
mustard. The corners of my jaw aching in anticipation, I carried it to
the table in our backyard, picked it up with both hands but was stopped
by my wife suddenly at my side.
"Here, hold Johnny (our six-week-old son) while I get my sandwich," she
said.
I had him balanced between my left elbow and shoulder and was reaching
again for the ham sandwich when I noticed a streak of mustard on my
fingers.
I love mustard.
I had no napkin.
I licked it off.
It was not mustard.
No man ever put a baby down faster. It was the first and only time I
have sprinted with my tongue protruding. With a washcloth in each hand,
I did the sort of routine shoeshine boys do; only I did it on my tongue.
Later, after she stopped crying from laughing so hard, my wife said,
"Now you know why they call that fancy mustard . . . "Poupon."

This joke reminds me of JD because when he poops, he POOPS and usually some leaks out!

JD is doing ok.  I am hoping that once we get him medically stable that he will calm down. He can be very irritable at times

I found this awsome group in Yahoo.  It is newborn jaundice and the people there are terriffic.  If I have a question someone always has the answer.  There children have all had very dangerous levels of billirubin after birth.  Their medical problems range from not so bad to severe.  I have been looking for a group like this for a while now and I am glad that I found one.

So, I don't know if I ever told you all about my angel story but I will tell it again.

I happen to live next to a psychic, and right after JD was born she told me that I had three angels that were looking out for me.  One of them comes and goes and the other two are constantly around me.(Now, I am not one into psychics but I was polite and listened to what she had to say.) She told me that there was a man, a little old woman, and a younger male who had died in a tragic accident.  She asked me if I knew anyone resembling this angles that had passed on.  In high school I had a friend die as the victim of drunk driving and he was pretty bad.  Jason's "grandmother" died in a tragic fire 4 years ago, and the man could have been any number of people.  She told me that they were looking over me and that they were there to protect me from harm.  I didn't give any thought to the story until the other day.  JD was sitting in his car seat while I did the dishes and he started to babble.  I went to check on him and he was looking straight into the air SMILING and babbling away to who knows what.  Then today, we were at Berma's house, and she has this angel on the wall that belonged to her father that is now deceased.  He started doing the same exact thing as before while staring at this angel!  He has never jabbered and smiled so much when he talks to me! I don't know if it has any purpose but I am obsessed with angels now!  Maybe he sees them!

That is all for now.  Have a good night

Christina

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Not so good news:

JD had a docotr's appointment this afternoon, and I am afraid that
we don't have very good news at all.
First, he only gained 15ozs in three weeks. He now weighs
10lbs15ozs. He will be three months old on the 19th. JD eats 40ozs
of formula a day, so he should be gaining more weight than he is.
We have been instructed to start a tablespoon of cereal in his
bottle right before he goes to sleep at night. I don't like that
idea because he has trouble just with formula. He could choke worse
on the cereal.
Second, JD will now see a pediatric neurologist. The doctor noted
today how stiff JD's muscles are. The pediatric neurologist will
run their own sets of tests.
And the worst news of it all, JD's EEG results were not good. His
brain showed no response to visual stimuli. They are afraid that JD
is blind. I did tell the doctor that it seemed like JD could see.
He will focus on me for a breif moment and give a small "I'm Happy"
grin. That is when he told me that with his high levels of
billirubin, his brain may be stained(kernicterus;brain damage) causing all of the
visual/hearing difficulties, but that his body may find a way
to "work around" the impairment. JD may also be seeing but it isn't
processing in his brain. He also could be seeing, but it could be
upside down, turned around, so he isn't seeing correctly. They want
to repeat the test for a longer time span.
I should have expected this. I told myself over and over again that
we were going to incounter problems, but I was in shock. I still am
and I am not sure how I feel about it. Confused, hurt, sad, and the
anger is returning. So many emotions and I am not sure what to do
with them all. JD's social worker at the hospital came in to talk
to me today, and she told me that I was very strong. I laughed on
the inside. If she really knew how I was feeling she wouldn't have
said that.

I will update more later.

Christina

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JD was evalutated today:

Happiness House out of Geneva came to the house today to do an evalutation of JD so see if he required services.  They were impressed that he was alert and active.  He does have quite a bit of stiffness in his arms and some floppiness in his trunk, but he move all limbs well.  He has trouble keeping focus on an object and has trouble following it from side to side.  He usually looses it somewhere in the middle.  He didn't respond to sound all that well(but this we already knew).  Because he is so young they may just wasnt to keep an eye on him once a month until he shown signs of needing services.  I will get a report in the mail with their exact findings.  Other than those few minor things he did well.  They even had him on his belly.  Usually he cries but today he was trying to hold his head up to look around.  I was proud!

Another doctor's appointment tomorrow.  They are going to want more labs to see how the enzymes in his blood are doing.  He is getting big so I can't wait to see how much he weighs!

We should know the exact date of the benifit tomorrow.  I will let everyone know.

Christina

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JD had his HIDA scan.

He did ok.  He didn't like the fact that he had to lay on his back wrapped in a heavy vest.  The vest was to keep him still so that the pictures could be taken.  The radio-active die they put into his arm did what it was supposed to do.  It moved from his liver to the small intestines, so we have to wait to see what the doctor says.

Jordyn was the ring bearer in our friends wedding this past weekend.  He was so cute, he looked like a little irish gentleman.

JD smiles now.  I almost got him to smile for the camera, but he wouldn't do it long enough to snap a picture.  I can't get enough of that smile.  It takes awhile to get one out of him, but when he does, it is priceless.

Also, JD's  grandmother is holding a benifit for JD to help cover some of our expenses.  As it stands, it will be held early in October.  We will be having dinner, dancing, a 50/50 raffle, and door prizes.  I don't have too much information at the moment, but if you would like to donate to the benifit just let me know.  My address is below if you wish to send an item to raffle off.  I will post more information as it becomes available. E-mail me with any questions

Christina Gillett

864 Dublin Road

Clyde Ny 14433

Enjoy some new pictures! Talk to everyone soon!

Christina

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Poor Baby:

JD has a cold.  His nose is all stuffed up, and he has gunk in his eye.  He had a doctors appointment today, and they confirmed that it was just a cold.  They thought he was congested in the chest, but after taking a closer listen he sounded fine.  They were going to order a chest x-ray to make sure nothing else was going on, but unless he is having trouble breathing or running a fever, they are going to just say that it is a cold.

Then, I got some not so good news.  JD's liver enzymes are increasing at a fast pace. These enzymes increase when the liver is not functioning properly.  JD's are high.  Billirubin is still high as well.  We will be seeing the GI doctor sooner than what was scheduled so they can find out what is going on.  Hopefully the HIDA scan will be able to detect something as well.

I don't have anything else tonight.  I know there is more but I need some sleep. 

have a good night

Christina

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