Saturday, October 23, 2010

Letter to Isaiah

To my precious lil moose,
As I prepare for your 2nd birthday party tomorrow I am amazed! WOW where has the time gone? I can't believe that its been two years since God has brought you in our lives. You are such a miracle and I will always give God the praise and glory!
As I wander down memory road I can't believe the path we have traveled. I wouldn't want any other baby but you! We are so blessed to have you in our lives. Here is some insight to the feelings, emotions, and all else along the way..
When we got our diagnosis that you were going to have a cleft lip and cleft palate I was scared to death. I wasn't scared because I didn't love you.. it was the complete opposite! I loved you so much. I couldn't imagine what you life would be like... how long could I carry you, how long would you be in the hospital, how would I feed you, how many surgeries would you face, how would we handle people being cruel. I had so many questions and not very many answers.
Its amazing what God can do.... He gave us a baby for us to love and take care of but I had no idea that you would teach me so much about love! You are my hero and i will love you forever.
When we brought you home, I had no idea about the challenges we would face but I knew that as your mommy I would be there every step of the way. I prayed that God would give me the strength to do everything I needed to take care of you! I also prayed that God would place people in our path at the right time just when we needed them. Once again God never fails us! He gave us such a great care team at childrens hospital. Dr. Jaing is someone we will forever hold near and dear to our hearts. We felt that you wasn't just a patient to them.. they truely cared about you and your family! We saw them atleast once a week for the first six months of you life... we couldn't imagine our life without them....
Then we have Dr. Mitchell--- He is a Godsend himself.. What a special doctor.
We tried very early to get involved in the birth to three program.We realized that its all in Gods timing. I can't say enough good things about all the special people we have met. Its amazing to know there are people out there that love you like I do. We are so grateful for all they have done to help you make such great progress! I have to tell you how special Stacy is! Its amazing how special she is to you. You have actually spent time crying for her when you were sick... Im so glad put her in our lives! She is an amazing and wonderful person!
We are so blessed to have such great friends! There are friends that have been with us every step of the journey! For that I am forever grateful! It is such a blessing to know from God that there is someone there to share each milestone with.
You are so rotten. You figured out a long time ago how to wrap gma around your lil finger. We are so fortunate to have all the grandparents in our lives that we do. Grandma and mama and papa are always so eager to help take care of you and your brother and sisters. We sure couldn't make it without them!
For all your sisters. They have been so brave on this journey. Learning along the way about true love and making sacrifices. Loving you right from the start! always being there to give a helping hand. And especially here recently, to help teach you to be rotten!
I love watching you and Elijah play. Its so cute. What he doesn't think of, you do and vice versa! You two are true partners in crime!
You look so much like your daddy! You even act like him sometimes! I am so proud of the man that he is. He works so hard to provide for us! He loves us all so much!
My prayer for you is that you continue to do as well as you are. You have met milestones taht completely amaze me. You are saying so many words now. Its crazy but you say new words everyday! You have so many signs now that its time to start sentences. I'm having a hard time keeping up with all the signs now.
More than anything I want you to know how much we love you and how blessed we are to have you in our lives! Thank you for being the amazing little boy that God created you to be!
Love forever and always.... mommy

Tuesday, October 19, 2010

Isaiah's Birthday

Can't believe that its time to plan my baby's birthday. WOW! I can't believe its been two years already. He still continues to amaze me everyday! What a true miracle from God he is!
I LOVE YOU MOOSE!!! You are my inspiration!
love mommy

Friday, October 8, 2010

My baby is perfect!

I know that everyone already knows it but I just wanted to remind everyone! I can't believe my baby is almost 2 years old. Where has the time gone? It seems like yesterday that we brought him home. Yet here we are almost 2 years and 3 surgeries later. WOW what a miracle we have. We are so blessed.
About 4 months ago he was saying 4-6 words. That was it. I was nervous and probably a little discouraged. Since that time we started a program with birth to three called hippotherapy. WHAT AN AMAZING PROGRAM. Once a week he rides a horse and works with therapists molly and stacy. His speech has by far skyrocketed. I dont know if there are even words to describe his vocabulary now. WOW. I bet he says 50-75 words. Its crazy! Today at Audreys urging he said "loser". I think his favorite word is "meanie". I am very happy to report that finally 22 months after birth my baby finally said it... he said "dad"!
His sign vocabulary is probably somewhere between 30-40 words. It crazy how quick he picks it up.
His sleeping has improved as well. We started using a weighted blanket. He usually only gets up 1-2 times a night. Big improvement from 4-6 times a night!
AND of course he wouldn't be a boy if he wasn't ornrey! Boy he is just downright wild! crazy as can be, but you know what... I wouldn't have hime any other way! I love every little inch of him! To me he is JUST PERFECT!!!!
I love you Moose!

Friday, October 1, 2010

WVU pics

Isaiah and Hippotherapy















Who would have thought putting him on a horse would have been just what he needed... Along with God and the most amazing teachers ever!




Wednesday, August 4, 2010

Its been a while...

Just wanted to update everyone n Isaiah's progress.
He is growing in leaps in bounds. Everyday he does something that truely amazes us. What a miracle God has given us!
Isaiah had the ABR test done last week. They had to replace his right tube as well. It was blocked and not functioning. He seems to be feeling better so hopefully its from the relief! We are currently waiting for the test results on a hard written copy. I know they said the results were fine but I want it in black in white.
He is learning to blow noise makers... Part of me screams YAH! he can do it but wow thats a lot of noise for such a lilttle boy! He learned to say move and moo. He is such a smart little boy!
While we were on vacation he came down with hand, foot, and mouth disease. He recovered after about 4 days but his feet look awful now. They are peeling and he complains and whines with them. Hopefully they heal soon.
Well, I know he is progressing in other areas too but honestly my brain hurts to much to think about it...
We are forever grateful to our friends and family who have walked along beside of us during this journey.... We love you all!
Amy

Wednesday, June 9, 2010

Another update

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

random pictures
















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

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....

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

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

Sunday, February 21, 2010

Ear draining is back.

Isaiah had been on an antibiotic for several days cause of cough and nose gunk. I pretty much stopped it and then the ear drainage started, go figure.

I dont know what is causing it. Its a little frustrating. I was really hoping that the surgery had taken care of that problem. It did cut down drastically but here we go again. Ill keep ya posted.

Friday, January 29, 2010

isaiah has a new word..

I am pleased that after months of just momma my baby has a new word... unhuh. he has prob said it fifty times this evening.. its music to my ears!!!! i am thrilled. God has given my baby the ability to speak. Thank you Jesus!

Wednesday, January 27, 2010

Doctor's update

Took Isaiah to the doctor yesterday for his 15 month check up. He now weighs 26lbs even and is 32 inches long. He got 3 more shots but has done pretty well with them so far. has a rash and a yucky nose... another antibiotic for him.

If anyone has any suggestions on getting this boy to sleep during the night I would love to hear them. I feel like a walking zombie. I will admit I need sleep. You would think by now I would be use to it but I can promise you Im not!

Amy

Thursday, January 7, 2010

I think I spoke to soon...

I was excited that Isaiah was happy again. He seemed to be recovered from surgery and all. Well he has had a cough for a couple of days. He woke up this morning and had green drainage. URGH! this evening he started fevering up. Last I checked it was 101. He is very cranky. I think Im in for an even longer night than usual...
Keep Prayin!

Wednesday, January 6, 2010

Isaiah is Back!

Im so happy to report that my baby is back! He is laughing and playing like he never had surgery. He is now using all that stored up energy to get into everything! Today he discovered that he can crawl up the steps and slide down backwards. Its amazing how smart he is. Today I walked into the kitchen to find him in the cabinet looking for a snack, just like the big kids. He stood there studying every item before deceiding on his puffs. He took the container out and closed the door than stood there trying to open it for a minute. He then realized devon was in the room so he walked over and handed them to her...

I believe with every ounce of my being that this surgery was a huge success! I am waiting for the day my baby says da-da. When I said da-da to him the other night he looked over and pointed to Dave. I know he is getting it and I know very soon he will be talking up a storm. I believe that God is going to restore my babys speech 100%.

I am so blessed to be his momma! He has tought me so much in his short life. I am so excited with each milestone he makes.