lots of things have been happening with Isaiah. wanted to catch everyone up to speed.
Isaiah had his allergy testing done last week. On a good note is was all clear. He tested negative for any food allergies. We are grateful for that. but on the other hand thats one more thing to cross of the list that cant be the issue.
We have started the skihi program. It is a program that is done thru the wv school for the deaf and blind in romney. They will come to the house every other week. We will working on sounds and continue signing. When she comes next week she will be doing and language screening on him. I am anxious to see where he stands.
As for signing, Isaiah is doing wonderful. I am completely amazed that he picks up so quickly. I think his signing vocabulary is between 30-35 words. That is amazing. And what he learns -- we learn! He has taught us so much in his little life! Praise God for his miracles!
Today when Ms. Stacy was here we discussed some issues with him. She believes there is some sensory delays for him. We are in the process of getting an occupational therapist to do an evaluation. We started something new called the Wilbarger Brushing Protocol. It involves brushing isaiah all over his body every two hours for two weeks. also joint compressions were added. Also some other exercises too. Alot to do but if it helps my baby one ounce it will all be worth it!
I am in t he process of scheduling another appt with the ENT. I am really pushing for them to do the ABR test. I believe there is a small hearing loss. It seems everyone is on board but the ENTs. They are the ones we need the most. I believe that God placed the right audiologist in our path this time. Please pray for the ENT to agree to do this test. It is very important. It will give us an idea of which way to proceed with treatment.
In ending, although I knew that my baby would have issues to faces this is hard. My heart breaks for him but at the same time I am forever grateful that he is as healthy as he is. I just want to know what we are faced with so that we can get him the best tratment possible.
Please pray for Dave as well. going in tomorrow for a stress test. Been carrying a lot of fluid and the wanna make sure taht he dont have another blockage.
Amy
Wednesday, June 9, 2010
Tuesday, May 18, 2010
Isaiah's dr visit in morgantown
We went yesterday for our second opinion. Here is all the information... Some I agree with, Some I do not!
First-- He said that he agrees with the ENT in pittsburgh that the hearing test is within the normal ranges. He said that he would repeat the same hearing test. If the results were the same he would do nothing. If the results were different he would consider the ABR test. The ABR test is done under sedation but is very clear. Nothing can compromise the results. I wish they would just do it instead!
Second-- He agreed to refer him to a pediatric allergy doctor. They can only test for food allergies at this point but may provide some answers.
Third-- WVU cannot do a sleep study until age two. Guess we will wait that out a lil longer. I mean we have went 18 months without much sleep whats a few more months?
Fourth-- He believes that his clumsiness and falling are not ear related. He believes it is normal development. I DO NOT AGREE!
Fifth-- He said that he would not take out his adneoids. He said that it would present more probles with speech and eating. He suggested we deal with the sleep issues and leave adenoids alone. I am researching this information cause I don't completely agree.
Guess we will see what hearing and allergy tests say and go from there...
Amy
First-- He said that he agrees with the ENT in pittsburgh that the hearing test is within the normal ranges. He said that he would repeat the same hearing test. If the results were the same he would do nothing. If the results were different he would consider the ABR test. The ABR test is done under sedation but is very clear. Nothing can compromise the results. I wish they would just do it instead!
Second-- He agreed to refer him to a pediatric allergy doctor. They can only test for food allergies at this point but may provide some answers.
Third-- WVU cannot do a sleep study until age two. Guess we will wait that out a lil longer. I mean we have went 18 months without much sleep whats a few more months?
Fourth-- He believes that his clumsiness and falling are not ear related. He believes it is normal development. I DO NOT AGREE!
Fifth-- He said that he would not take out his adneoids. He said that it would present more probles with speech and eating. He suggested we deal with the sleep issues and leave adenoids alone. I am researching this information cause I don't completely agree.
Guess we will see what hearing and allergy tests say and go from there...
Amy
Thursday, May 13, 2010
We are getting a second opinion
After going to pittsburgh last week, we have deceided that it would be best to get a second opinion. We go this monday.
This is crazy. As a mom, I know something isnt right. Why cant the doctor feel it too? If they did the scope test and seen his adenoiods are partially obstructing his airway then why? why wont they remove them?
I also feel there is a greater issue with his hearing then they are willing to admit. I am praying that this visit will answer a lot of questions that I have.
I am praying they will repeat his hearing test and do more and also check his adnoids too.
There is a lot of information to take in.
On top of everything, DAve leaves for school for two weeks.
Keep praying....
This is crazy. As a mom, I know something isnt right. Why cant the doctor feel it too? If they did the scope test and seen his adenoiods are partially obstructing his airway then why? why wont they remove them?
I also feel there is a greater issue with his hearing then they are willing to admit. I am praying that this visit will answer a lot of questions that I have.
I am praying they will repeat his hearing test and do more and also check his adnoids too.
There is a lot of information to take in.
On top of everything, DAve leaves for school for two weeks.
Keep praying....
Thursday, May 6, 2010
The Next Step
We have another appt with Ms. Stacy today. Hopefully she can give me some insight on the information we received on Tuesday. I will admit I am confused, frustrated and overwhelmed.
Why is it as parents we have to fight for every breathe for our children?
I will try to get all my thoughts together and post soon.
Amy
Why is it as parents we have to fight for every breathe for our children?
I will try to get all my thoughts together and post soon.
Amy
Wednesday, May 5, 2010
Tuesday, April 27, 2010
My baby is 18 months old today!
Wow what an amazing 18 months its been. I cant believe how far we have came in such a short time. there was a time I didnt think we would make it 18 months and now look at us. Not only have we made it but we are much stronger because of the struggles we faced. God sure knew what he was doing when he chose to bless us with such a special baby. I cant even begin to imagine our life without him.
I think back to the day we got our diagnosis. I remember being so scared. I remember being so angry. I just didnt understand. I had no idea what laid ahead for us or mostly for our baby. I knew he would have challenges but nothing could explain what we would soon realize was our new life. And now I can say I wouldnt change it for the world!
Then I think about the day my beautiful precious baby entered this world. What a great and joyous day that was. It was a very challenging day. I remember being in labor and realizing that he was almost here. I was scared to death! I couldnt wait to meet him but I just wasnt sure I would know how to be his mommy. Its amazing how God gives us mommies the tools we need, huh? From the moment he was laid in my arms I was in total love. I couldn't believe God could create so a wonderful and precious baby. He was perfect in my eyes!
When we went to Pittsburgh when he was 4 days old. We met Dr. Jaing for the first time. I had no idea what an important role he would play in Isaiah's life. They placed his NAM that day. It was halloween and I will never forget. That NAM was placed in hopes that it would decrease the chances for one surgery. We knew in our hearts that we had to do it. We didn't even think twice. We didn't care about the long drives every week. We just knew that as his mommy and daddy we owed it to him to do everything we could to help him. When they removed his NAM before his first surgery we knew instantly we had made the right decision! He looked so good.
The first few months of his life were challenging. I wanted everyone to see what a miracle he was but so many couldn't get past his mouth. I think the part I miss the most about his first six months was his gorgeous smile! It was a smile that could light up the room.
When he had his first surgery I knew what they told us to expect but he's done so well! I was amazed at the great job they done. Dr. Jaing is truly our hero. I can't say enough good things about him. Although he moved and is no longer a part of Isaiahs care team he will remain forever in our hearts. By the time he was two weeks post-op you would think it had been months since surgery. A couple of weeks ago marked our 1 year anniversary for that surgery and you can barely see his scar!
Although he was a little delayed with meeting some of his milestones we were thrilled that he was meeting them! It didn't matter to us that he was behind. We thought he was perfect! I pray that we have never missed an opportunity to give God praise for such a miracle that he has blessed us with!
He had his second surgery in December. I can honestly say I had no idea what to expect! That was a very rough surgery and even rougher recovery time~ I knew this surgery was gonna take care of so many struggles but I couldnt believe how hard it was on my baby. The life he knew was changed. He would never eat the same or drink the same or try to talk the same. He had to learn to eat and drink all over again. We are definitely making progress now!
We started working with the birth to three program. Again God placed the right people in our lives at the right time! Ms LeaAnn is doing a great job in teaching us signs to help Isaiah communicate and in hopes to not become frustrated. He has picked up so well. He is doing better than I ever expected. I have a new list for signs to learn. He is actually saying more and yes when he signs them. Its so amazing! As for Ms. Stacy Isaiah loves her! He knows when I say ms stacy is coming that he is gonna have some fun! He runs to the door looking for her. He loves to play with her. When we first started she gave him a sucker. He drooled everywhere. He didnt have the muscle skills to keep his mouth shut and move it around. He had one the other day and it was so much less of a mess! What a great job he is doing.
So as I look back over the last 18 months I see what a miracle that has been given to us. Sometimes I look at him and think.. Really? could this beautiful baby really be mine? I believe with all my heart that God placed baby isaiah in our lives for a reason. I am so anxious to see how God will continue to use my baby to bless others!
TO MY PRECIOUS ISAIAH:
I JUST WANT YOU TO KNOW HOW MUCH WE ALL LOVE YOU. ALTHOUGH YOU ARE AS ROTTEN AS CAN BE- I WOULDN'T TRADE YOU FOR THE WORLD! YOUR DADDY AND I LOVE YOU MORE THAN LIFE ITSELF! YOU ARE DEFINITELY ELIJAHS BEST FRIEND. I WATCH YOU TWO PLAY AND WONDER WHAT MISCHIEF YOU WILL GET INTO NEXT. I SEE YOU INTERACTING WITH YOUR SISTERS NOW AND THINK WOW! IT WONT BE LONG UNTIL YOU WILL BE TALKING AS MUCH AS THEY ARE. THEY LOVE YOU SO! SO AT THIS MOMENT KNOW, THAT ALONG WITH YOUR BROTHER AND SISTERS, FROM THE MOMENT YOU WERE EACH CONCEIVED THAT WE LOVED YOU AND WILL CONTINUE TO DO SO EVERYDAY OF YOUR LIFE. LOVE MOMMY
I think back to the day we got our diagnosis. I remember being so scared. I remember being so angry. I just didnt understand. I had no idea what laid ahead for us or mostly for our baby. I knew he would have challenges but nothing could explain what we would soon realize was our new life. And now I can say I wouldnt change it for the world!
Then I think about the day my beautiful precious baby entered this world. What a great and joyous day that was. It was a very challenging day. I remember being in labor and realizing that he was almost here. I was scared to death! I couldnt wait to meet him but I just wasnt sure I would know how to be his mommy. Its amazing how God gives us mommies the tools we need, huh? From the moment he was laid in my arms I was in total love. I couldn't believe God could create so a wonderful and precious baby. He was perfect in my eyes!
When we went to Pittsburgh when he was 4 days old. We met Dr. Jaing for the first time. I had no idea what an important role he would play in Isaiah's life. They placed his NAM that day. It was halloween and I will never forget. That NAM was placed in hopes that it would decrease the chances for one surgery. We knew in our hearts that we had to do it. We didn't even think twice. We didn't care about the long drives every week. We just knew that as his mommy and daddy we owed it to him to do everything we could to help him. When they removed his NAM before his first surgery we knew instantly we had made the right decision! He looked so good.
The first few months of his life were challenging. I wanted everyone to see what a miracle he was but so many couldn't get past his mouth. I think the part I miss the most about his first six months was his gorgeous smile! It was a smile that could light up the room.
When he had his first surgery I knew what they told us to expect but he's done so well! I was amazed at the great job they done. Dr. Jaing is truly our hero. I can't say enough good things about him. Although he moved and is no longer a part of Isaiahs care team he will remain forever in our hearts. By the time he was two weeks post-op you would think it had been months since surgery. A couple of weeks ago marked our 1 year anniversary for that surgery and you can barely see his scar!
Although he was a little delayed with meeting some of his milestones we were thrilled that he was meeting them! It didn't matter to us that he was behind. We thought he was perfect! I pray that we have never missed an opportunity to give God praise for such a miracle that he has blessed us with!
He had his second surgery in December. I can honestly say I had no idea what to expect! That was a very rough surgery and even rougher recovery time~ I knew this surgery was gonna take care of so many struggles but I couldnt believe how hard it was on my baby. The life he knew was changed. He would never eat the same or drink the same or try to talk the same. He had to learn to eat and drink all over again. We are definitely making progress now!
We started working with the birth to three program. Again God placed the right people in our lives at the right time! Ms LeaAnn is doing a great job in teaching us signs to help Isaiah communicate and in hopes to not become frustrated. He has picked up so well. He is doing better than I ever expected. I have a new list for signs to learn. He is actually saying more and yes when he signs them. Its so amazing! As for Ms. Stacy Isaiah loves her! He knows when I say ms stacy is coming that he is gonna have some fun! He runs to the door looking for her. He loves to play with her. When we first started she gave him a sucker. He drooled everywhere. He didnt have the muscle skills to keep his mouth shut and move it around. He had one the other day and it was so much less of a mess! What a great job he is doing.
So as I look back over the last 18 months I see what a miracle that has been given to us. Sometimes I look at him and think.. Really? could this beautiful baby really be mine? I believe with all my heart that God placed baby isaiah in our lives for a reason. I am so anxious to see how God will continue to use my baby to bless others!
TO MY PRECIOUS ISAIAH:
I JUST WANT YOU TO KNOW HOW MUCH WE ALL LOVE YOU. ALTHOUGH YOU ARE AS ROTTEN AS CAN BE- I WOULDN'T TRADE YOU FOR THE WORLD! YOUR DADDY AND I LOVE YOU MORE THAN LIFE ITSELF! YOU ARE DEFINITELY ELIJAHS BEST FRIEND. I WATCH YOU TWO PLAY AND WONDER WHAT MISCHIEF YOU WILL GET INTO NEXT. I SEE YOU INTERACTING WITH YOUR SISTERS NOW AND THINK WOW! IT WONT BE LONG UNTIL YOU WILL BE TALKING AS MUCH AS THEY ARE. THEY LOVE YOU SO! SO AT THIS MOMENT KNOW, THAT ALONG WITH YOUR BROTHER AND SISTERS, FROM THE MOMENT YOU WERE EACH CONCEIVED THAT WE LOVED YOU AND WILL CONTINUE TO DO SO EVERYDAY OF YOUR LIFE. LOVE MOMMY
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