Today we took Vinny to the Neurologist. This appointment went really well and Tony and I felt very content with the information we received. We viewed the results of Vinnys MRI; which I thought was very interesting. Now that I have an idea of how his brain developed, I feel as though I understand his condition better. The neurologist did say to expect the worst; which we have...but I have real HoPE for Vinny that he will progress in a positive way. He may not talk and he may not walk.....and I am fine with that.
I joke saying that now I have a reason to keep one of my boys living with me forever!!!
Monday he starts Occupational Therapy. I'm looking forward to it. I can't wait to start working with him and the therapists in hopes to improve Vinnys develpement.
Thursday, December 31, 2009
Sunday, December 27, 2009
Current thoughts on HPE
Although times will probably get rough, I am accepting the fact that Vinny has HPE a bit more. I think Tony is feeling the same way. It truely a disorder that is day by day. So far (knock on wood) Vinny has been doing great. No medical issues have arised which I am very greatful.
I have found a few great sites on HPE that have helped alot. Great information and great support. I have listed a few of those sites on this blog. In July there is an HPE conference in Maryland that Tony and I would love to attend. Hopefully we will be able to make it. It would be a great opportunity to learn as much on HPE as possible in hopes to help Vinny out in the future.
I have found a few great sites on HPE that have helped alot. Great information and great support. I have listed a few of those sites on this blog. In July there is an HPE conference in Maryland that Tony and I would love to attend. Hopefully we will be able to make it. It would be a great opportunity to learn as much on HPE as possible in hopes to help Vinny out in the future.
Wednesday, December 23, 2009
Update on last post...
I am glad to report that Vinny is doing much better with his feedings. Turns out the constipation from his MRI was the culprit all along. He is now feeding as normal and I can finally put him back in his high chair or bumbo seat without him getting any sort of pain in his stomach. I was really worried there for a bit.
So far everything else is going well with him. We are still working on getting him to sit better on his own. I really feel one day he will master it and hope that he will eventually crawl too.
We will continue to pray for him. :)
So far everything else is going well with him. We are still working on getting him to sit better on his own. I really feel one day he will master it and hope that he will eventually crawl too.
We will continue to pray for him. :)
Monday, December 14, 2009
Is this the beginning of it all.....
Today Vinny is going to go and see Dr. Bradley regarding some feeding issues. The past few days Vinny has been taking bottles okay, but has not been taking solids well. He cries in pain everytime we give him a spoonful of food. Dr. Bradley wants to be sure he does not have a stomach infection. I'm really worried that this is going to be a reacurring issue. What if he needs a feeding tube of sorts? God, my mind is just spinning with what ifs.
The past week Vinny was constipated too. I read that this can also be a side effect. This worries me too. I feel that now that we know he has HPE; things are going to get worse.
Yesterday I was looking at some of the kids on the internet that have different severity's of HPE. It made me so sad to know that my child too could possibly end up in a wheel chair, having a feeding tube, etc. But the one thing I noticed about all these children, is that they all had been described as being able to light up the room with their smiles. And many of the parents consider themselves blessed to have such a special child in their lives.
Vinny does that too!! :)
The past week Vinny was constipated too. I read that this can also be a side effect. This worries me too. I feel that now that we know he has HPE; things are going to get worse.
Yesterday I was looking at some of the kids on the internet that have different severity's of HPE. It made me so sad to know that my child too could possibly end up in a wheel chair, having a feeding tube, etc. But the one thing I noticed about all these children, is that they all had been described as being able to light up the room with their smiles. And many of the parents consider themselves blessed to have such a special child in their lives.
Vinny does that too!! :)
Friday, December 11, 2009
To Know or Not to Know - 12/11/2009
I've decided that right now I can't look at the (so little) information their is on this disease. It's too soon for me. It fills my thoughts with worry and images that I don't want to have. I don't want to think of the possible things that could happen to my child....the possiblity that my child may not live a normal life. It breaks my heart into a million pieces. Its just too soon.
Vinny has been very constipated the last few days. Could this be a sign of his disease. This disease effects the muscles in the body. Could it effect his bowels?
I fear that now that we know about this disease; its only going to get worse. Like when you go to the doctor for a sore throat and he tells you you have strep throat; you walk out feeling much worse than you did when you went in. I feel this is going to happen to Vinny now. We now have some information and now it is going to get worse.
GOD...WHY MY BABY!!!!
Vinny has been very constipated the last few days. Could this be a sign of his disease. This disease effects the muscles in the body. Could it effect his bowels?
I fear that now that we know about this disease; its only going to get worse. Like when you go to the doctor for a sore throat and he tells you you have strep throat; you walk out feeling much worse than you did when you went in. I feel this is going to happen to Vinny now. We now have some information and now it is going to get worse.
GOD...WHY MY BABY!!!!
Thursday, December 10, 2009
Dr. Simms' Diagnosis - 12/10/09
Semilobar Holoprosencephaly!!! This morning Vinny was diagnose with this rare disease. His brain did not fully develope. WHY!!! Why my baby! I can't believe this. My baby...a rare disease. I never thought this would happen. But then who does.
Holoprosencephaly. This word has been replaying in my mind since the doctor told me. I can't even begin to wrap my brain around it. I immediatly got on the internet and searched this word....this rare disease. So many signs are present. The small head, the one front tooth, stiffness in the body. WHY MY BABY!!!
I cry when I think about it. WHY MY BABY!!! Will he walk? Will he talk? Will he play with his big brother Jake? Will he be normal? Will he have seizeures from this? What other problems could he have?...or will he have? WHY MY BABY!!! WHY!
Jake asks me why I am crying. He knows.....he knows its Vinny. I told him to love his brother. Take care of him and protect him. He said "Okay mamma."
How does one prepare themselves for the unknown.
Holoprosencephaly. This word has been replaying in my mind since the doctor told me. I can't even begin to wrap my brain around it. I immediatly got on the internet and searched this word....this rare disease. So many signs are present. The small head, the one front tooth, stiffness in the body. WHY MY BABY!!!
I cry when I think about it. WHY MY BABY!!! Will he walk? Will he talk? Will he play with his big brother Jake? Will he be normal? Will he have seizeures from this? What other problems could he have?...or will he have? WHY MY BABY!!! WHY!
Jake asks me why I am crying. He knows.....he knows its Vinny. I told him to love his brother. Take care of him and protect him. He said "Okay mamma."
How does one prepare themselves for the unknown.
Monday, December 7, 2009
Vinny's 1st Birthdays / MRI Day - 12/7/09
Today is Vinny's 1st Birthday. I can't believe it has been a year. I think back to how I thought life will be much easier with him once he is a year old. I expected that he would be sitting & crawling and possibly walking. I looked forward to watching him and Jake play together.
That however is not the case. Vinny does not fully sit on his own, crawl and much less walk. Despite these issues he always has a smile on his face and has the best laugh in the world. I LOVE HIM SOOOOO MUCH!!!! Happy Birthday Vinny!!!!
Today is also Vinny's MRI day. Tony and I are taking him to his appointment this afternoon. We hope to hear some positive news after the results are in, but have prepared for the worst.
We brought Vinny into the MRI department. They administered a bad tasting oral sedation. Tony and I sat with Vinny in the MRI room as I rocked him to sleep. He was out with in 15min. I laid him on the MRI table and watched as they strapped him in so that he did not move. He was a little restless at first. I couldn't however not get over how cute he looked so peaceful and at ease. He was dressed in perwinkle colored pants and a child sized hospital gown.
The nurse then taped on a breathing tube of some sort to his nose to monitor his breathing during the MRI. As Tony and I walked out of the room, I couln't help but cry. My baby was laying on that table!!! I felt so helpless for him.
After he was finished with his MRI I held his little limp (from sedation) body so close. He was sooo cute. He was still groggy and tried to talk which was kindof funny :) It was the most relaxed I have ever seen him.
Now we wait for the results with our fingers crossed and prayers sent.
Happy Birthday Vinny!!!...Mamma hopes next year will be even better!
That however is not the case. Vinny does not fully sit on his own, crawl and much less walk. Despite these issues he always has a smile on his face and has the best laugh in the world. I LOVE HIM SOOOOO MUCH!!!! Happy Birthday Vinny!!!!
Today is also Vinny's MRI day. Tony and I are taking him to his appointment this afternoon. We hope to hear some positive news after the results are in, but have prepared for the worst.
We brought Vinny into the MRI department. They administered a bad tasting oral sedation. Tony and I sat with Vinny in the MRI room as I rocked him to sleep. He was out with in 15min. I laid him on the MRI table and watched as they strapped him in so that he did not move. He was a little restless at first. I couldn't however not get over how cute he looked so peaceful and at ease. He was dressed in perwinkle colored pants and a child sized hospital gown.
The nurse then taped on a breathing tube of some sort to his nose to monitor his breathing during the MRI. As Tony and I walked out of the room, I couln't help but cry. My baby was laying on that table!!! I felt so helpless for him.
After he was finished with his MRI I held his little limp (from sedation) body so close. He was sooo cute. He was still groggy and tried to talk which was kindof funny :) It was the most relaxed I have ever seen him.
Now we wait for the results with our fingers crossed and prayers sent.
Happy Birthday Vinny!!!...Mamma hopes next year will be even better!
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