5 months ago next week Mr. Korbin came into our lives as a gift from God. All children are a gift but God showed me that day to not take advantage of these precious gifts as they could easily be taken away.
A lot has come to pass since my last post. First, in case I didn't mention, Korbin passed his EEG. We finally got his genetics screening back and it was great as well. He had his 4 month check up and was 10 lbs 14 0zs. We also had our first neurological diagnosis of Ankle Clonus. Ankle Clonus makes his leg and foot "beat" like Thumper (for lack of a better description).
His occupational therapy is going well. We haven't started physical therapy yet. We have noticed that he struggle with his right arm and that his right foot is very tight. The neurologist and the neurosurgeon (who we saw today) both agree with me that his legs are tight as well but the OT and the pediatrician disagree.
Originally, we were planning to do the MRI in December but as of today that has changed. Our visit with the neurosurgeon confirmed my suspicions that there has been increased pressure in Korbin's head. We have scheduled surgery for next month to put a shunt in his head. Because it is not seriously urgent, we are able to wait until next month and give him time to grow.
We will be going back to New Orleans in approximately 2 weeks for an MRI (he will be sedated for this) and to see their Neurologist since ours here is out for awhile. We are seeing the neurologist because of a suspected seizure that happened earlier this week. The MRI will be used to get a better look and will be used to possibly confirm the pending diagnosis of Dandy-Walker. We will also return to New Orleans the week before the surgery for the pre-op.
I go back and forth from being terrified and and being okay with it all. We fully anticipated this result today. I had already packed a bag in case I needed to stay. Even though I had prepared myself for this, a little part of me had hoped that I was overreacting. Unfortunately that was not the case.
So, I may post again after the MRI but I will likely wait until after the surgery. Please keep my baby and my family in your prayers.
Sabrina
Wednesday, September 10, 2008
Wednesday, August 13, 2008
Almost 4 months....unbelievable!
Again I have slacked a little on updates but in a way that is really a good thing. That means that things are relatively uneventful.
First off, as of last week, Korbin weighed 9lbs 6ozs!!!!!!!!!!
Going back to the last post, we have not had too much happen. We saw the neurologist at the end of last month and that went okay. She was a bit concerned about some jerking activity that his leg was doing so she sent us for an EEG, which came back.......get this......NORMAL!!!!!!!!! I can't help but think that maybe we are starting to take a turn down a road that is just a little less eventful!
She was evaluating Korbin and mentioned that his little toe is bent a little funny. I never thought much of this since many of the folks in my family wouldn't even be runner ups for an ugly foot commercial (they are far too ugly)! During the evaluation I mentioned the hypospadia that was recently discovered. She seemed a little surprised and asked me if there had ever been any genetics testing done. There hasn't been. I asked her what would be causing her to even ask that. She told me that there were some physical anomolies that alone would mean nothing but together could mean a possible genetic issue. The anomolies that she was referring to was the toe, the hypospadia, the brain malformation, and low set ears. We had that test done also that day and are still awaiting the results. The results will do nothing more than be informative. If there does end up being something, Robbie and I will have to be tested to see if we are carriers of something or if it was a fluke.
We did have a little scare that resulted in an immediate CT scan but that all came back okay. We did discover that Korbin has been suffering from reflux and began treating that. We have completed speech therapy and are just doing occupational therapy once every other week. Over the last two weeks, Korbin has changed so much. He is smiling, cooing a little, sucking on his hands and really, just being a baby. I have really been able to relax over the last couple weeks. I am not so nervous about every little twitch. I have really been able to enjoy him rather than fear the things I couldn't control. His OT this week went wonderfully. The therapist was very impressed at the improvement that the two weeks brought. I don't know if the therapy will continue if he continues to improve. They may continue in order to just monitor him at least until he reaches the 6 month (corrected, not actual) mark. 6 months is the magic number for major motor and to know if we are possibly looking at cerebral palsy. We will go back to N.O. in a couple of weeks for another CT and another visit with the neurosurgeon. The visit following this will be the one that we are all waiting for. It will be the MRI, plus he will also be at the 6 month mark so we should know a lot at that time.
As always, I appreciate all of the prayers and thoughts. I will probably update again after our next N.O. visit. By then we will have another OT appt. and his 4 month check up and hoping to have the results of the genetic test.
Thanks again!
Sabrina
First off, as of last week, Korbin weighed 9lbs 6ozs!!!!!!!!!!
Going back to the last post, we have not had too much happen. We saw the neurologist at the end of last month and that went okay. She was a bit concerned about some jerking activity that his leg was doing so she sent us for an EEG, which came back.......get this......NORMAL!!!!!!!!! I can't help but think that maybe we are starting to take a turn down a road that is just a little less eventful!
She was evaluating Korbin and mentioned that his little toe is bent a little funny. I never thought much of this since many of the folks in my family wouldn't even be runner ups for an ugly foot commercial (they are far too ugly)! During the evaluation I mentioned the hypospadia that was recently discovered. She seemed a little surprised and asked me if there had ever been any genetics testing done. There hasn't been. I asked her what would be causing her to even ask that. She told me that there were some physical anomolies that alone would mean nothing but together could mean a possible genetic issue. The anomolies that she was referring to was the toe, the hypospadia, the brain malformation, and low set ears. We had that test done also that day and are still awaiting the results. The results will do nothing more than be informative. If there does end up being something, Robbie and I will have to be tested to see if we are carriers of something or if it was a fluke.
We did have a little scare that resulted in an immediate CT scan but that all came back okay. We did discover that Korbin has been suffering from reflux and began treating that. We have completed speech therapy and are just doing occupational therapy once every other week. Over the last two weeks, Korbin has changed so much. He is smiling, cooing a little, sucking on his hands and really, just being a baby. I have really been able to relax over the last couple weeks. I am not so nervous about every little twitch. I have really been able to enjoy him rather than fear the things I couldn't control. His OT this week went wonderfully. The therapist was very impressed at the improvement that the two weeks brought. I don't know if the therapy will continue if he continues to improve. They may continue in order to just monitor him at least until he reaches the 6 month (corrected, not actual) mark. 6 months is the magic number for major motor and to know if we are possibly looking at cerebral palsy. We will go back to N.O. in a couple of weeks for another CT and another visit with the neurosurgeon. The visit following this will be the one that we are all waiting for. It will be the MRI, plus he will also be at the 6 month mark so we should know a lot at that time.
As always, I appreciate all of the prayers and thoughts. I will probably update again after our next N.O. visit. By then we will have another OT appt. and his 4 month check up and hoping to have the results of the genetic test.
Thanks again!
Sabrina
Sunday, July 20, 2008
3 months old
It has been awhile since I have updated but all in all, things are going well. I am still on high alert for seizures but I don't think we are seeing any thus far. Speech therapy is going well. Well enough in fact that we will likely be done after next week. Our last Dr. visit was a little over a week ago and Korbin's weight was terrific. He weighed 7 lbs 7.5 ozs. That means he gained 19 ozs in 14 days which was 5 ozs over our goal weight! That was exciting. Of course, everyone should know by now that we can't have good news without something happening. The last visit was intended for a circumcision. Well, after the great weight gain, they began the circ but found that they could not complete it. He has what they call hypospadia which is appearantly very common. We will have to see a urologist when he is closer to a year old. Go figure huh? I couldn't help but laugh when they told me this. It only figures.
After our speech appointment on this past Friday the speech and occupational therapist did their post NICU evaluation. They said that for the most part he is doing very well. They are concerned however about the way he lifts himself. They said that it looks like he is over extending himself. Frankly, I am not quite sure what that means but they said it could be nothing but it could be from the hydrocephalus or it could be the early signs of Cerebral Palsy. We will go 1 day a week, every other week for occupational therapy (not sure what they do) and once a month for physiacal therapy.
We go back to the Neurologist on Thursday and shouldn't have to see her again for 3 months or so. We also go back to the pediatrician on Thursday. I am hoping that everything will be good enough now with his weight and everything else that we won't have to be seen again until his 4 month check up which will give me almost a month of not having to see him again.
Maybe we have encountered everything that we will encounter and can continue with our lives and start moving on and living our lives with what we have been dealt. I have found a couple excerpts that perfectly describe having a preemie that I would like to share so enjoy.
Sabrina
~*~How Preemie Moms Are Chosen~*~
(Erma Bombeck)
Did you ever wonder how the mothers of premature babies are chosen?
Somehow, I visualize God hovering over Earth, selecting his
instruments for propagation with great care and deliberation. As he
observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew.
Forrest, Marjorie, daughter. Patron Saint, Celia.
Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to
profanity.
"Finally, he passes a name to an angel and smiles.
"Give her a preemie." The angel is curious. "Why this one, God?
She's so happy."
"Exactly," smiles God.
"Could I give a premature baby a mother who knows no laughter? That
would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a seaof self-pity and despair.
Once the shock and resentment wear off, she'll handle it.
I watched her today. She has that sense of self and independence so
rare and so necessary in a mother.
You see, the child I'm going to give her has a world of its own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you.
"God smiles. "No matter, I can fix that. This one is perfect She has
just the right amount of selfishness.
"The angel gasps, "Selfishness?! Is that a virtue?
"God nods. "If she can't separate herself from the child occasionally,
she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time,
she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised inthe air.
God smiles. "A mirror will suffice."
WELCOME TO HOLLAND
by Emily Perl Kingsley.c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills... .and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I wassupposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
After our speech appointment on this past Friday the speech and occupational therapist did their post NICU evaluation. They said that for the most part he is doing very well. They are concerned however about the way he lifts himself. They said that it looks like he is over extending himself. Frankly, I am not quite sure what that means but they said it could be nothing but it could be from the hydrocephalus or it could be the early signs of Cerebral Palsy. We will go 1 day a week, every other week for occupational therapy (not sure what they do) and once a month for physiacal therapy.
We go back to the Neurologist on Thursday and shouldn't have to see her again for 3 months or so. We also go back to the pediatrician on Thursday. I am hoping that everything will be good enough now with his weight and everything else that we won't have to be seen again until his 4 month check up which will give me almost a month of not having to see him again.
Maybe we have encountered everything that we will encounter and can continue with our lives and start moving on and living our lives with what we have been dealt. I have found a couple excerpts that perfectly describe having a preemie that I would like to share so enjoy.
Sabrina
~*~How Preemie Moms Are Chosen~*~
(Erma Bombeck)
Did you ever wonder how the mothers of premature babies are chosen?
Somehow, I visualize God hovering over Earth, selecting his
instruments for propagation with great care and deliberation. As he
observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew.
Forrest, Marjorie, daughter. Patron Saint, Celia.
Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to
profanity.
"Finally, he passes a name to an angel and smiles.
"Give her a preemie." The angel is curious. "Why this one, God?
She's so happy."
"Exactly," smiles God.
"Could I give a premature baby a mother who knows no laughter? That
would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a seaof self-pity and despair.
Once the shock and resentment wear off, she'll handle it.
I watched her today. She has that sense of self and independence so
rare and so necessary in a mother.
You see, the child I'm going to give her has a world of its own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you.
"God smiles. "No matter, I can fix that. This one is perfect She has
just the right amount of selfishness.
"The angel gasps, "Selfishness?! Is that a virtue?
"God nods. "If she can't separate herself from the child occasionally,
she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time,
she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised inthe air.
God smiles. "A mirror will suffice."
WELCOME TO HOLLAND
by Emily Perl Kingsley.c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills... .and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I wassupposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Thursday, July 3, 2008
11 Weeks
It is hard to believe that Korbin is over 2 months already! He is getting bigger everyday. We are still waiting on that first real smile though. I have found myself just begging him to smile. It is amazing how much more every little thing means with him. Not saying that they weren't great with the older 2 but I guess that smile from him will show me that he is aware of me and that will mean so much. I think that this is so important to me because of all of the "could be's" that we have been given. Maybe if he would just smile and show me that he is aware of me and who I am everything will be alright. I know that in reality that is not necessarily true but every milestone that we hit will be a relief for me.
We saw a speech therapist this week to see if Korbin is swallowing correctly. This was more to rule that out as a potential problem deterring proper weight gain. Fortunately, the therapist didn't feel that the test was needed so she just analyzed how he drank his bottle. She recommends 1-3 days of therapy per week for a short period of time. The amount of days will depend on how much I am able to do here at home. The exercises are fairly simple and are intended to strengthen his muscles in his mouth to help him drink more and tier out less easily.
I know that I was warned ahead of time that Korbin would likely need a lot more attention than some babies and that we could possibly need many services such as speech therapy, occupational therapy and even physical therapy. I knew it would be a lot but I didn't realize how much all of this would consume my life. As of right now, Korbin is being seen by a pediatrician, a neurologist, a neurosurgeon, a speech therapist and the states early intervention program. It seems like I am living in Dr's offices. I know that it is not his fault and that I should be thanking God that he is even here with us (which I do daily) but it is so much to deal with. Hopefully everything will get easier and we won't have anything else added to us anytime soon. I don't know how much more I can deal with. I know I will deal with what I have to. Having a newborn is already exhausting but with all of the appointments and constant worry, I am beyond exhausted. Everytime his leg jerks I wonder if it could be a seizure, everytime he doesn't eat well I wonder about his weight and his hydrocephalus, I find myself multiple times a day checking to make sure his soft spot isn't bulging, and to top it off, he has started this wonderful trick of spitting up large amounts and choking on it which is nerve racking to say the least. With all of my constant worrying and lack of sleep, it is a wonder I am even able to function properly.
Korbin will see his pediatrician again next week so we will see if he is where he should be with his weight. If my math is correct, he should be at least 7lbs 2ozs by his next visit so we are keeping our fingers crossed.
Sabrina
We saw a speech therapist this week to see if Korbin is swallowing correctly. This was more to rule that out as a potential problem deterring proper weight gain. Fortunately, the therapist didn't feel that the test was needed so she just analyzed how he drank his bottle. She recommends 1-3 days of therapy per week for a short period of time. The amount of days will depend on how much I am able to do here at home. The exercises are fairly simple and are intended to strengthen his muscles in his mouth to help him drink more and tier out less easily.
I know that I was warned ahead of time that Korbin would likely need a lot more attention than some babies and that we could possibly need many services such as speech therapy, occupational therapy and even physical therapy. I knew it would be a lot but I didn't realize how much all of this would consume my life. As of right now, Korbin is being seen by a pediatrician, a neurologist, a neurosurgeon, a speech therapist and the states early intervention program. It seems like I am living in Dr's offices. I know that it is not his fault and that I should be thanking God that he is even here with us (which I do daily) but it is so much to deal with. Hopefully everything will get easier and we won't have anything else added to us anytime soon. I don't know how much more I can deal with. I know I will deal with what I have to. Having a newborn is already exhausting but with all of the appointments and constant worry, I am beyond exhausted. Everytime his leg jerks I wonder if it could be a seizure, everytime he doesn't eat well I wonder about his weight and his hydrocephalus, I find myself multiple times a day checking to make sure his soft spot isn't bulging, and to top it off, he has started this wonderful trick of spitting up large amounts and choking on it which is nerve racking to say the least. With all of my constant worrying and lack of sleep, it is a wonder I am even able to function properly.
Korbin will see his pediatrician again next week so we will see if he is where he should be with his weight. If my math is correct, he should be at least 7lbs 2ozs by his next visit so we are keeping our fingers crossed.
Sabrina
Friday, June 27, 2008
10 weeks
This week has been fairly busy. I had my visit with the local neurologist only to discover that I will still need to go to New Orleans. It turns out that I was seeing the neurosurgeon in New Orleans. Nothing really new was discovered at the neurologist since we are still not able to have an MRI due to Korbin's age and size and developmentally, we are not able to tell much right now either. At the pediatrician today everything looked good except for weight gain. Korbin gained 10 ozs in 14 days but the Dr. really was wanting him to gain 14 ozs. We are changing how I make his formula in order to make it 24 calories. If he doesn't do well with the new mixture then we will have to change his formula all together to a 24 cal formula. The Dr. also wants to check and make sure he is swallowing properly when he is eating. We have an appointment with the speech therapist to do a scan of him swallowing next week to hopefully rule out any problems in that area. Right now, we are giving him the benefit of the doubt and just going to try increasing his calories and logging his exact intake in ounces each day. If he doesn't start packing on the pounds soon, we will have to resort to a "last resort" option which is defintiely not the most appealing of options. If he doesn't start making some progress we will have to begin talking about a feeding tube to get him to gain some weight. I am really hoping it doesn't come to that because that thought is terrible. On a positive note though, his movement and tone looked good today. There was one excersise that the Dr. performed that Korbin did well on but the Dr said he could have done better but we are just going to keep an eye on it. We discussed in detail infromation on seizures since Korbin is at a high risk of having them. We will go back in 2 weeks for yet another weight check and another measure of his head (which is still growing normally). It seems as though the first weeks were just a precursor of things to come. Please continue to keep us in your prayers.
Sabrina
Sabrina
Friday, June 20, 2008
9 Weeks old
Korbin's due date came and went this week. Looking at him and knowing that he was technically just supposed to be born and that he is instead 2 months old puts things in perspective. Korbin had his evaluation with our states early intervention program last week. This program is designed to notice any developmental delays early so we can work on them early before the child is put too far behind. Because of his prematurity, they judge him by his adjusted age which is a newborn right now. As expected, he tested as a newborn in most areas and a 1 month old in others. He is not considered delayed since adjusted he is just now a newborn. He still qualified however due to his condition. We will be having someone come in once a week to work with him and if later on down the line it looks as though he needs physical therapy or even speech therapy, they will bring someone in to help. I believe this program will be very helpful.
Next week, we will be visiting the local neurologist. I will then decide if I would like to continue going to New Orleans to see the Dr. there or just stay here locally. I am also hoping that I will have a better understanding of everything after visiting her. We will also be having another visit to the pediatrician next week. He wants to check Korbin's head size, weight and evaluate his eating before we try and plan a vacation. I had spoken with the Dr. the other day and he asked me about Korbin's intake. When I told him the amount he was taking, he told me that depending on his weight gain when he sees him next, and if he hasn't increased his feeds, he may want to do another scan of his head. He was okay with the weight gain on the last visit but it was on the low end of normal. We also may need to change the mixture of his formula to increase calories. I will find out next week what the Dr. wants to do.
I also asked the Dr. when I spoke with him if there will be a point any time soon where we won't have to worry so much about the pressure increasing in his head and a shunt being required. He told be that things could change next week or in 6 months or never. I guess the waiting game never really ends.
Sabrina
Next week, we will be visiting the local neurologist. I will then decide if I would like to continue going to New Orleans to see the Dr. there or just stay here locally. I am also hoping that I will have a better understanding of everything after visiting her. We will also be having another visit to the pediatrician next week. He wants to check Korbin's head size, weight and evaluate his eating before we try and plan a vacation. I had spoken with the Dr. the other day and he asked me about Korbin's intake. When I told him the amount he was taking, he told me that depending on his weight gain when he sees him next, and if he hasn't increased his feeds, he may want to do another scan of his head. He was okay with the weight gain on the last visit but it was on the low end of normal. We also may need to change the mixture of his formula to increase calories. I will find out next week what the Dr. wants to do.
I also asked the Dr. when I spoke with him if there will be a point any time soon where we won't have to worry so much about the pressure increasing in his head and a shunt being required. He told be that things could change next week or in 6 months or never. I guess the waiting game never really ends.
Sabrina
Friday, June 13, 2008
8 weeks old
We had an appointment yesterday for Korbin's 2 month shots and a sit down with the Dr. about our latest developments. I am not sure if I mentioned in my previous post that the neurologist had said that Korbin has Dandy-Walker Syndrome. I have spent a lot of time searching the internet for information on this. The information available is quite confusing especially for someone who came short of excelling in biology and anatomy. Anyway, Korbin's Dr. sat down with me and explained things tothe best of his ability and also showed me Korbin's CT scan (this is the first time I had ever laid eyes on them). He showed me all of the abnormalities and explained them as clearly as he possibly could given the fact that neurology is not his specialty. He explained that the calcium deposits that had been mentioned a while back are indicitive of possible major motor difficulties, especially in the legs. He also showed me the back of his brain. There is a cyst of spinal fluid in the back of his brain in an area that controls major movement and equilibreum. This too can cause difficulties. All in all, Korbin has been dealt with a double whammy in his brain on top of being 9 weeks early which could also work against his development. He also still has the enlarged ventricals in the top of his brain that are filled with fluid. There is still the possibility of surgery but we are in the clear for now. Korbin's Dr. mentioned that the pediatric neurologist in the area is comprable to the Dr. in New Orleans so we are going to get an appointment with her and see how that goes. The neurologist at Ochsners may be good but I was not overly comfortable with him and he did a poor job of explaining things to me. We are hoping to get in with the Dr. here soon so we may be able to get some answers.
All other aside, Korbin is doing great growth wise. As of yesterday he weighs 5 lbs 10 ozs. He gained a little less than an ounce a day which is a little on the low side of normal but okay. His head is growing at a normal rate which is wonderful since that could be our only indicator of a problem in his head. He has gotten the hang of taking his bottles although there are times that I have to "talk him into it" and fight with him to put his tongue down so he can suck properly. I have managed to get into contact with this states early intervention program and they will be evaluating him today. Although he will likely test to be a "normal" newborn, his condition should automatically qualify him. This program will make available to us speech therapists, occupational therapists and physical therapists. This program is intended to try and work on any development problems early so we can try and "fix" them before he gets older and makes it more difficult.
Being home has been in itself interesting. With a 5 year old who wants to help.....a lot, and a 2 year old for whom the world revolves around (in her mind anyway) who thinks Korbin is nothing more than a noisy baby doll. The first few days were nerve racking but thankfully, the "new" is wearing off a bit so they are leaving him alone more. The 2 year old is getting a little braver and trying to "get" Korbin but we are working on that. I do find myself watching the older two running around and playing and praying that Korbin will be able to run around with them before too long. It is hard not to look into his eyes and wonder what life is going to bring for him but all we can do is pray for him and more so pray for us to have the strength and patience to help him be the best he can be. I know that if he does have any issues, they will likely worry me more than they will him so I will need the strength to be strong if for no other reason for him.
Thank you all for your prayers. I know I haven't updated much lately and I will try to get better about that. It will probably not be daily but I will try to update weekly, even if it only about the little things like the real smile he did the other day!!!!! :0) He is precious and I know that all of you who have been praying so hard for our family would love updates on our little miracle and I feel that it is the least I can do. Thank you all again!
Sabrina
All other aside, Korbin is doing great growth wise. As of yesterday he weighs 5 lbs 10 ozs. He gained a little less than an ounce a day which is a little on the low side of normal but okay. His head is growing at a normal rate which is wonderful since that could be our only indicator of a problem in his head. He has gotten the hang of taking his bottles although there are times that I have to "talk him into it" and fight with him to put his tongue down so he can suck properly. I have managed to get into contact with this states early intervention program and they will be evaluating him today. Although he will likely test to be a "normal" newborn, his condition should automatically qualify him. This program will make available to us speech therapists, occupational therapists and physical therapists. This program is intended to try and work on any development problems early so we can try and "fix" them before he gets older and makes it more difficult.
Being home has been in itself interesting. With a 5 year old who wants to help.....a lot, and a 2 year old for whom the world revolves around (in her mind anyway) who thinks Korbin is nothing more than a noisy baby doll. The first few days were nerve racking but thankfully, the "new" is wearing off a bit so they are leaving him alone more. The 2 year old is getting a little braver and trying to "get" Korbin but we are working on that. I do find myself watching the older two running around and playing and praying that Korbin will be able to run around with them before too long. It is hard not to look into his eyes and wonder what life is going to bring for him but all we can do is pray for him and more so pray for us to have the strength and patience to help him be the best he can be. I know that if he does have any issues, they will likely worry me more than they will him so I will need the strength to be strong if for no other reason for him.
Thank you all for your prayers. I know I haven't updated much lately and I will try to get better about that. It will probably not be daily but I will try to update weekly, even if it only about the little things like the real smile he did the other day!!!!! :0) He is precious and I know that all of you who have been praying so hard for our family would love updates on our little miracle and I feel that it is the least I can do. Thank you all again!
Sabrina
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