Thursday, September 30, 2010

Upper GI

We went for the Upper GI at Vandy on Tuesday. It was frustrating to say the least. The problem with this test, like several others, is that if he doesn't vomit or reflux during the study, it is hard to see if the nissen is loose or undone.

So, they injected the contrast into his G tube and waited about 5 minutes. He didn't do anything, so they "thought" the nissen was still intact. No explanation for the massive amounts of vomit or spitting up.

I won't even go into the 2 residents that performed the test. They didn't know a nissen from a nissan =).

We go see our ENT on October 5th, so I am pinning my hopes on him for some sort of answers. He usually tells us straight, and I appreciate that. For now, we are just coping and watching him super close.


All in all, he is doing really well and I am thankful for that.

Hope you all have a great Thursday!

Friday, September 24, 2010

Nissen

Some of you may remember that when Cohen had his G tube surgery, they also performed a Nissen fundiplication. This is basically where they "wrap" his stomach at the top to prevent him from refluxing and vomiting.

Well.......a few days ago he started spitting up a little. It had a some milk in it, but I thought maybe it was from us dipping his pacifier in milk during the feeding. I called our nurse and she said it was unlikely that the Nissen would come undone this soon.

Unlikely. Not my favorite word.

He is now fully vomiting after feedings------causing him to aspirate and have some lung congestion. He hacks and coughs all night. He sounds so pitiful. He is, however, still smiling and happy as ever, thank goodness!

 I talked to the surgeon this morning and he scheduled an upper GI for Tuesday, to make sure it's "unwrapped". The he said we would decide from there what to do.

I obviously don't want him to have the surgery again. But, I'm not sure it's safe for him not to have it. I guess we will cross that bridge when we come to it!

If anyone has a child that had/has a nissen, I would LOVE to hear input! We are just so uncertain on what needs to happen. He is on pretty strong reflux meds, so hopefully this will aid in controlling it.

Hope everyone has a wonderful weekend. This is Calee's last weekend in GYPSY, and we will be happy to have more free time when it ends, but she has made some great friends and lifetime memories! Love to you all!

Thursday, September 23, 2010

9 Months Old

9 months have come and gone since our precious little man made his appearance. It will be his 1st birthday before we know it. I am already planning a "Breakfast with Santa" themed party! I can't wait!

It's been a while since I have done a really detailed post about Cohen and all his info---so here we go!

Feedings-
Cohen is still fed 100% formula fed through the G tube. I do dip his pacifier in his milk so he can get a little taste each feeding. We did try baby food for a few days, but his lungs got super congested so our nurse advised we stop. We go back to our ENT doctor on October 5th, he will do a scope and hopefully we will see some improvement in this area. For now, we are thankful for the G tube.

Orthopedic-
Cohen is taking a 1 month break from his brace and cast. The brace never fit very well, and the cast were not improving his feet at all. The ortho doctor wants to do surgery on his left foot later this fall, to "clip" his heel cord. We are waiting to schedule this after the ENT appointment, to make sure we can coordinate with anything he might want to do as well.

Weight-
Cohen's last weight check  he was just over 14 lbs! He is still wearing 3-6 month clothes. We go to our regular ped doctor this week, for his 9 month check up, so hopefully we can get more measurements.

Schedule-
Cohen eats every 4 hours@ 6, 10, 2. AM and PM. We had been letting him sleep through the 2 a.m. feeding, but he always wakes by 3, so we are just adding it back in. Ugh. I am hoping this part passes quickly!
He naps from 7am-9am and 1-3 pm. Usually. He is not the best napper in the world.
Cohen loves playtime! He loves floor time and all his "equipment", i.e.-the exersaucer, mirror toy, bumbo..

Developmental-
Cohen is almost 6 months looking at his "adjusted" age. I would say he is almost a typical 6 month old. He is soooo close to sitting up! He can do it propped in the couch or with the boppy. He can do about 10 seconds without being propped. He is really getting stronger everyday. He laughs and babbles all the time. I will be excited to go to the NICU folllowup clinic in December and see what they say.

Therapy/Services-
Cohen still has his nurse that comes weekly. He goes to Physical Therapy in Murfreesboro. We also have a teacher from TEIS that comes monthly.

Outings-
Cohen has been to church several times now. He also loves to get out in his stroller when Justin and I are running. I am still trying to limit his exposure, so we keep him in most of the time.

This is all I can think of for today! Let me know if you have any questions or want info that I left out!
XXOO

Monday, September 20, 2010

Brothers!

Here are some photos I took over the weekend of the boys! Cohen is soooo in love with his brother and sister-----he laughs at them so much. 


Gypsy Slideshow

One weekend left of Gypsy! Thanks to all the friends and family that have come to see Calee in the play! Thanks to my awesome Mom (LuLu) for watching the boys while we are at the theater for shows!

I wish I had taken a picture of everyone that has come.....I didn't get one of LuLu and Ed, Mayma, Digger and Aunt Amy, Joanna, Sara, Samantha, nor Julie and Bailee! They all came opening weekend and I didn't have my camera!



Thursday, September 16, 2010

Dear Cohen

Dear Cohen,

Mommy is so proud of you. You are doing wonderful. You are so cute and playful.

But, please, please in the name of fashion................... GROW! Mommy can't look at these same ole 3 month clothes much longer. It is making me crazy. I know you have to be sick of them too.

You are a big almost 9 month old little boy. It's time to say goodbye to the old and in with the NEW! New cute fall 6 month clothes I have ready and waiting for you!

Thank you!

Love,

Mommy

Tuesday, September 7, 2010

September?!?!?!?!

I can't believe we are already a week into September! I am so ready for beautiful fall weather. Fall is my absolute favorite time of the year. I love the fall colors, cool mornings and of course UT football season starting =)

Sorry I have been so behind on the blog! Calee's play opens this Friday and we have been "knee deep" in rehearsals. Tonight is the first (of 3) dress rehearsals, and Calee is nervous about a 45 second costume change! It will be interesting!

Cohen is doing well, chugging right along. He is really filling out, especially his chubby cheeks! We have taken him to church the last 2 weeks, and he has done great. I am trying to get him out a little more before cold and flu season begin. I know we will have to really be careful then.

We have Vanderbilt appointments on Wednesday, with the G tube clinic and the ortho doctor. Next week we see a new specialist, a GI doctor. Our regular pediatrician wanted us to see him in regards to some slow gastric emptying issues. I don;t look forward to adding another doctor to the list, but I know its a necessary evil.

I have started to think and pray about our appointment with our ENT doctor, which will be October 5th. He will do a scope and then possibly schedule another MRI and broncoscopy. At that time, the ortho doctor will coordinate with him and do a small surgery on his foot at the same time. At least, that is the plan for now. I know that can change quickly.

My prayer is the ENT visit will show his left vocal cord is working again. This would be a huge step in the right direction!

I am going to post a silly picture of Ames and Cohen. Cohen is making a "shocked face". They are so sweet together. Cohen is completely enthralled by Ames. He smiles and laughs anytime Ames gets near him. I have taught Ames to say "You are my best friend", and he randomly walks up to Cohen and tells him during the day. Its about the sweetest think I have ever seen.