Jacob's Butterfly!

Jacob was coloring with his markers yesterday and said "Look mommy I did a butterfly". If you notice in the pink circle, the wings with little circles inside them and he solid green part is the body. He is so smart. I couldn't believe he did this. And don't overlook the smiley at the bottom left of the page. I can't wait for the day he writes his name. He writes a "J" a lot and other things after it and says it's his name or Jaron but it's not quite right. We are working on it. Thanks to everyone for his birthday gifts. He had a great day! He is learning to pedal his bike now too. Growing up so fast. He also goes to Sunday school with the other kids instead of the nursery now. Man how time flys!!!

New NAM

Ok we went to NY Monday and got his new NAM and he is doing good with it. He is drinking 5 oz. every 3 hours now and I weighed him while we were there. He was squirming but it kept going from 12.8lbs. to 12.6lbs. so he is somewhere between the two. He is getting so big. In this particular picture I had fully undressed him and he just layed there never flinching. This was Monday night after our long day in NY. I just want to say thank you again to everyone who has helped us with flights. We are getting so much help and I am so grateful for it. I do keep everything in a log and Jaron will know one day how everyone pulled together to help him. God Bless You.

Handsome Boys

We thought this was cute since we do have to go to NY so often. He has grown to love the place!!! We go back Monday for his new NAM. I can't wait. I think we will be able to notice a big difference. He is doing great on the dairy-free breast milk. I definately think he is allergic to dairy because he had all the symptoms and now they are all gone. What a blessing this has been. I have learned to trust God for so much more since he came into our lives. Thanks for reading.

Holding my brother!

Jacob LOVES to hold Jaron. He was so proud after this picture saying "I did hold him!!!" He is such a great helper. Jaron is growing so fast. My too handsome boys. I am a very proud mommy.

Sixth trip to New York

Well went to NY again yesterday and Daddy came with us for the first time. They molded Jaron for a new NAM. I guess they weren't happy with the one we had made in Atlanta. So we will get that next Monday when we go back. He is doing great. We found out he is allergic to dairy so we got him dairy-free breast milk from the Mother's Milk banks. He is loving it!!! God has been so good to us. We always get some kind of help right on time every time we need it. Thank you all for helping us and praying for us. They gave us a surgery date of Feb. 2nd so I guess that is going to be the BIG DAY. We'll keep you posted. Please check back regularly for pictures of our handsome little man.

Happy 3rd Birthday!!!

Well Jacob (my baby) is 3 years old today! I can't believe it. Man how time flys. He is so smart and getting so big. I just measured him and he is 3ft. 1.5 in. He got this guitar for his birthday and hasn't put it down all day. We are going to get his pictures made now. Thank you to everyone for his birthday gifts.

Change of plans

We have decided to go to New York every week now. We were not happy with the doctor in Atlanta, he is new at the NAM we want the best for Jaron. So now we will be making weekly visits to NYU Medical Center. It will be so worth it when it's all over. If I think in terms of weeks we have about 19 more weeks left before surgery. I am so anxious to see how Jaron is going to look all fixed up. He is so precious. He smiles a lot and is reaching out for things and our faces and he usually does pretty good on the plane rides. Thank you so much to everyone who has given us money or frequent flyer miles to help us get to NY. Everyone has been so supportive and we truly appreciate it. God Bless You!

Drinking Milk

We have been letting Jacob drink out of a regular cup. He feels like such a big boy. He has a birthday coming up Sept. 12th. I can't beleive he is about to be 3 years old. I guess it is so true what they say "TIME FLYS". Jacob is so smart and learning so much. We are very proud of him. Right now we are teaching him the books of the bible. He has an excellent memory. And oh how he loves his brother.

2 month check up

Well I haven't posted in a while because I have been very busy with doctor's appointments and trying to get some rest. But we did take Jaron to his 2 month check up and he weighed 11 lbs. 9 oz. and is 23 in. long. He is growing so good. Feeding him is still a very difficult task. We have tried 6 or 8 different kinds of formula and he threw up all of them or they constipated him so I did some research and found Mother's Milk Banks. There is 12 of them nationwide and they have mom's who donate their milk to help babies with medical needs. They do not get paid for it and they are blood tested and screened throughly. It has been such a blessing to have him on the breast milk. He doesn't spit it up like he did the formula and I feel so much better giving him the real thing. God has been so good to us by providing all our needs at just the right times. Jaron is smiling more and more and making lots of cooing noises. I'll try to post more often sorry it took me so long, just been too tired to get online. Thanks for reading.

The NAM kit

This is what I put together with a tackle box from wal-mart. These are all the things we use for his NAM. For any who don't know what kind of work the NAM is you can see there is q-tips that is for cleaning in his mouth when the NAM is removed, a flash light to look for sores, top right is unisolve to remove the base tapes, bottom left is a stock of the base tapes, bottom middle is the tapes with rubber bands to hold the NAM in place (I made up in advance), bottom right is bacitracin to put on sores and top section is longer q-tips to clean, glue for when we start taping the prolabium and a mirror to look for sores. Now you see why I don't have time for much of anything else. But it is so worth it to move things naturally rather than put him through so many surgeries. Thanks for reading.

Laying in the kitchen

Jacob covered Jaron with his blanket and then went into the living room and got the pillow and blanket off the couch and layed it ever so carefully right beside his brother and said "Mommy I'm laying with Jaron". So precious...

Camo

Here is Jacob playing with Daddy's army stuff. He is getting so big and helps mommy a lot. He really loves Jaron too and just can't seem to get enough of him. Thank God for my boys.

Sunday Suit

He was kinda fussy. But he's still handsome! We dedicated him to the Lord Sunday and this was his first time wearing a suit. Enjoy!

My NAM happy baby

Close up wearing the NAM

Third trip to NYU

Well we went back to New York yesterday and it was a very LONG day. Let me start from the beginning. Our flight didn't leave until 10:12am so that was not as early as last time. The traffic wasn't bad on the way to the airport but there was NO parking. I had to park in economy way out in lala land. Ok so after my mile hike to the terminal I made it inside and Jaron was ready for a bottle so I found somewhere to sit and fed him first. Then since I had already checked in online at home I went to get me some breakfast. So we boarded the plane and he did excellent. He drank one bottle on the plane and slept the rest of the way. We got to NY it was raining and we had the car service waiting to pick us up as planned. We got to NYU and got his NAM adjusted and he was a little fussy while we were there but I think he did great! I called the car service when we were ready to go and they came and got us taking us back to Laguardia Airport. We got there and I checked in only to discover that my flight was DELAYED 2 HOURS!!! Oh man I was bummed. I did not want to sit in that airport for 2 hours with a baby. But he did good and I sat down and had some dinner. The place was packed people in the floor everywhere. I guess there was some bad weather in ATL and other places. Lots of flights were delayed. So anyway we finally took off at 9pm and got home at 12:45am. That was a very long day. He slept on the plane on the way home too so that was a blessing. I think he is getting used to flying. Well we go back Sept. 14th to NY. Better luck next time!

Another surgery behind us

Well we survived the other set of tubes he had put in his ears last week. Even though he pitched a TOTAL FIT coming out of the anesthesia. He was really freaking out. He did not want to put on his clothes, he did not want to leave the hospital and when we finally dragged him out to the car and forced him into the carseat he took off his shirt under the carseat belt and was trying to open the car door going down the road. For anyone who knows him you know this is not my little boy. That stuff messed him up. When we got home he went running in the yard toward the road. Finally about an hour after being home he snapped out of it and asked me for a juice. Thank God! So now he is back to normal. Thanks for your prayers.

Almost Centered!

We have almost centered Jaron's Premaxilla! So the next step is going to be pushing it back into his mouth. I was changing his tapes and finally caught a smile with my camera. He is getting so big and starting to smile more each day. I am still so amazed at how much he resembles Jacob as a baby. We went to Atlanta Friday for another adjustment and things are good right now. We have gotten rid of the sores but who knows what tomorrow has for us.

Praise the Lord!

We got the results from Jaron's chromosomes tests and they said everything is normal. Which means it is only the isolated cleft lip and palate. For those who don't know, there are several other things that come along with clefts and we were fortunate enough to not have to worry about any of them. God is truly good!!! We want to give him all the glory.

Big "J" and Little "j"

This is our new nick names for the boys. Jacob thinks it's great! Here they are laying on our bed together. Jacob can't get enough of Jaron. He loves to hold him and kiss him and he tells me all the time "I love his NAM mommy". What a great big brother! He has to get a second set of tubes in his ears tomorrow at 10:15am. He is keeping fluid on his ears and the others he had in there have been out for some months. So they say he will be able to hear better with more tubes, not that I think he can't hear now but with fluid they say it sounds like you are under water all the time. So anyway, say a little prayer for him tomorrow. He will be put to sleep, the procedure is 30 minutes so not bad just scary to be put to sleep. We'll keep you posted. Thanks for reading.

Without his NAM

Here is a picture of Jaron kinda smiling without his NAM in. We were letting a sore heal so we had it out for a little bit. He is getting so big. We go back to Atl. Friday 12th. for another adjustment. Things were a little rough this weekend. We went to TN for a wedding and I took out the NAM sat. night to clean it and he was bleeding. So we called Dr. Granger in Atl. and he met us at CHOA for an emergency adjustment on Sunday. Jaron seems to be doing a little better now. I don't know sometimes. It's hard to get him to drink a full 3 oz. This NAM is a lot of work and very stressful at times, but I know it's the best thing for him. Please keep us in your prayers.

Second Trip to NY

Well we made it back to NY again yesterday and they said everything is looking good. Jaron has a sore on his mouth from the NAM so they smoothed out that part of it and we hope things will get better this week. We are trying to recover today from lack of sleep. I hope he does good tonight. The day he sleeps 6 or 7 hours straight will be SUCH a blessing. We will be seeing Dr. Granger in Atlanta again Friday 12th and then we go back to NY August. 16th for another check up. After that I think we plan to go every 3 or 4 weeks. Thank you for all your prayers and we will keep you updated after each Dr. visit if not before. Enjoy the pictures!

Smile!

Here is our handsome little man. He is growing up so fast. Always wants to help with Jaron. He gets me diapers and bottles and shares all his toys with Jaron. I am so proud of my Jacob. He loves his brother so much. He likes to tickle his toes.

Oh so Cuddly!

Here is my handsome little boy all cuddled up asleep on the boppy pillow. Life is so tiring. :-) We are starting to get better sleep at night. I have been bathing him very late and keeping him awake more during the day. So he mostly just wakes up for a bottle and back to sleep. You watch now that I said that he won't sleep a wink tonight and we are going to NY tomorrow. He has a sore on his mouth where Dr. Granger in Atl. adjusted it and so that makes feedings hard. I hope Dr. Grayson in NY can fix it and maybe next week will be easier for us. Thanks for reading.

Playing with my Brother

I love to sit with Jaron and play with his hands and rub his head. Mommy was getting ready so we are in the bathroom here in the picture.

Back to Atlanta Today

Well we went to the doctor in Atlanta today for Jaron's 1st NAM adjustment. He has been fussy with it and got a couple sores in his mouth, which is normal. We have smoothed it out and they say each week gets a little easier. I hope so. I want him to be happy and get used to it so he will drink better. I have medicine for his sore in his mouth and I think this week should be easier than last. He is getting more alert and he SMILED AT ME for the first time in the doctor's office today. I was making a SSSS noise looking at him and he was looking at me and smiled real big without his NAM so it was and it was so PRECIOUS!!! I laughed out loud. Maybe one day soon I can get a picture of him smiling and I will post it. Oh and I asked if we could weigh him and he weighed 9 lbs. 12 oz. Anyway, thanks for reading. God Bless You All.

Playing the Guitar

Here I am playing my guitar. Do you love my little tank top! :-) I am getting so big and my brother is so little. He likes to lay with me on my pillow.

Week one with the NAM

Well we are hanging in there this week. Jaron is still drinking his bottles but sometimes I have been numbing his mouth. He has developed some sores from his NAM and we were given a dremel which can be VERY helpful in smoothing down the rough spots. We go back to ATL. Friday at 2pm and I hope they make it better. Jaron has been swatting at his NAM and it pops him in the mouth and he screams. Of course they told me that he wouldn't do that because he is so little but my child has to be the exception to the rule. Anyway, we are still having issues at night. I think he has colic. Very fussy at night with stomach pains. So please keep praying for us that things will get better and mommy can get some sleep. We go back to NYU Wed. Aug. 3rd.

Handsome Little Man

Well here I am all grown up! We were walking out the door for church. I am a big boy now, using the potty, sitting on the front row at church with daddy and helping mommy with Jaron. I will be 3 years old Sept. 12th. Wow time flies!

Lovin' My Brother

Well this is me loving on my brother again! He is so precious and I love to rub his head and kiss him on the cheek. I am so proud of Jaron and I can't wait until he can play with me.

Jaron Got His NAM!

Well today is the big day! We went to CHOA today at 2pm and saw Dr. Granger. He put the NAM on Jaron and sent us on our way. This is going to be a lot of work for us but from what they tell me it will help him to drink a bottle better and take in less air. I hope so. Tonight will be the first night so please say a prayer for me that he sleeps good. He definately looks different and it is a change for us since we have gotten used to his cute little face these last 3 weeks. But we know it is what he needs to prepare things for surgery. They say it does not hurt him and he did better than most leaving the office asleep. He did drink a few oz. with it in so far and seems to do alright. We walked in the dor and Jacob just said "Jaron's got his bandaid" He knew what to expect from all the pictures he has seen. He's a great big brother. Remember to check the blog and I will keep you posted.

First Trip To New York!

Well we made our flight on time Wed. morning and Jaron slept the whole flight it was wonderful. And my friend came and got us from the airport and took us to the hospital. Everyone was so nice at NYU. We finally got back to see Dr. Grayson and he looked at the "Simon Arts Bands" and said Dr. Cutting was on his way. So when Cutting got there he looked and said yes we have to snip them. He said I should go out and it would take 2 minutes. So they numbed him with lidocaine and when they were all done they brought him to me and he was asleep. His mouth had lots of blood around it and on his tongue. They wanted me to wait about 45 minutes before I fed him to make sure the bleeding was stopped. He would not take his bottle so to make a LOONNGGG story very short....he SCREAMED the 1st hour of the flight back home and slept the second hour. He screamed when we got home wanting a bottle but wouldn't take one. So now I am feeding him with a medicine dropper. Poor little guy's mouth hurts and I sure do hope it gets better soon. Dr. Cutting said he had to put one stitch and it will disolve and they said wait and let Granger put the NAM on this Friday when we go. So that is the plan unless he thinks we need to mold him for a new one now. His premaxilla is very moveable now so that is good. We go to Atlanta Friday @ 2pm. Check back later that night or Saturday for possibly a picture of him wearing his NAM or just an updated post. Yesterday was very rough and I am going back Aug. 3rd too. Keep us in your prayers.

Jaron looks like me!

Well mom had to dress Jaron in the same onesie she dressed me in for the hospital pictures. And believe it or not, Jaron looks a lot like I did when I was born. If it wasn't for the cleft you may not be able to tell us apart.

Projectile Spit up!

Well Jaron has been spitting up more and more with each feeding so I thought he might have acid reflux. Believe it or not it is very common in babies and I looked online and it seems he has all the symptoms. So I made an appointment with the pediatrician, they are open on Sunday's, Thank God. And we dropped Jacob and Daddy off at church and I took him to the doc during the sunday school hour. He does have acid reflux and they gave him Zantac to help with that. I have noticed a difference. No more projectile MESS! He still spits up some but not much. He also suggested I add rice cereal to his bottles to help settle his milk in his stomach. I think it is helping. So they say that he could be on Zantac for months or up to a year old. They eventually grow out of it. 2 MORE DAYS~NY here we come! :-)

Our 2nd Trip to Atlanta

Well we went back to Atlanta today to get his NAM and Dr. Granger said he had already talked with Dr. Grayson in NY about Jaron. We discovered he has what they call bands. It is little peices of skin holding that middle peice over to one side. The center peice is called the premaxilla and they need to center that with the NAM but cannot until they cut those bands of skin. So we will see Dr. Cutting in NY wed. and they will numb it locally to snip the skin (they are very little). Then when they cut it loose they think the premaxilla (center peice sticking out) will move over on it's own. So then they will put his NAM on up there (Dr. Granger gave it to me to take to NY) or if the premaxilla moves too much they will have to mold him for a new NAM. So he is not currently wearing it because it won't help anything until they cut that skin. We'll keep you posted.

Potty Training!!!

Thank God Jacob has finally decided that he should stop pooping in his underwear. He has been using it in the potty for a couple weeks now. I am so proud of him. At first we would catch him pushing and pick him up and run and sit him on the potty but these last few days he has told me he needs to go. He is getting so big. Now that he's a big brother he has really seemed to mature and behave a little better. He sure does love his baby brother too! The picture above is the first time Jacob saw Jaron. A day to remember!

2 week check-up

I took Jaron for his 2 week check up today and he is 8 lb. 13 oz. and 21" long. He is growing good and in the 50% for his height and weight. I am so glad. Feedings can be difficult at times and he spits up a lot so I was worried if he was actually taking in enough. So now mommy feels better. He will go back for a 2 month check up and have to get 4 shots. We go back to Atlanta tomorrow to get his NAM and we have our first appointment in NY Wed. 20th @ 1pm. That is going to be a long day. Keep us in your prayers and we will keep you posted. Thank you all.

Jaron and Daddy

This is so precious. Jaron sleeping with his daddy. How peaceful. If only he would sleep like this for mommy at night. :-)

Me and my brother!

Jacob loves Jaron so much. He kisses him and rubs his head all the time. He always makes sure to know where Jaron is at all times. He is learning to share mommy.

Works of art!

Jacob loves to color and draw things. These are actually things he drew before Jaron was born. I emailed them to some of you and others haven't seen them at all. He is so smart for his age. Learning every day how to write new letters. We are so proud of him.

itty bitty Baptist

Picture of Me!

Jacob's Blog

Well I had to create Jacob a blog because our family website is maxed out so this is where you can find pictures of Jacob and new things about him. I think it's only fair to have one for him too since I have one for Jaron. So add this to you favorites and check back often for updated pictures and new things about Jacob.

Jaron sleeping & Jacob watching 

Jacob loves his brother 

First Trip to Atlanta

Well we took Jaron's to his first appointment at the Children's Hospital of Atlanta today. We met with the Genetisist, Nutritionist & Orthodontist. He got his impression for the NAM and they drew blood for chromosomes testing. We will find out the results by phone in 2-3 weeks on the chromosomes tests. That is just to make sure there is no other underlying defects. Most likely there isn't we just want to be sure. We go back next Friday to get his NAM put in. We have our first appointment in New York for Wed. July 20th @ 1pm. We plan to go up there once a month so they can monitor his progress since they will be doing the surgery in New York. We'll let you know how it goes.

Jaron's First Bath