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.