Everett's first overnight stay

Everett had his first overnight visit with his Grandpa Steve and Mamaw Frances this week. They had lots of fun together. See below for details from Mamaw.

To Margot, Dylan, and all the grandparents

We were blessed to have Everett for his first three day overnight stay without his parents. The little man was such a perfect gentleman. He was such a good boy and spent his days with us just babbling away and boy did he smile a lot. Having a little one in the house again made us feel young again and oh what joy he gave us. Here is a log of our day with our precious little one.

Tuesday- we came into town to babysit Everett and almost toward the end of the day when Margot was to pick him up at Aunt Mary,s we thought we would try to see if the new parents would be willing to let us take him home to Granbury with us for a couple of days. To our shock they said yes. We were so excited, we than met Margot and Dylan at their house where she packed all of Everett’s supplies and medication and gave us instructions on how to administer his medication and breathing machine. We than rushed out the door before they could changed their minds. :) We arrived home to Granbury around 10:30pm were we changed Everett's diaper and immediately put him down for the night and much to our surprise he slept a full seven hours before his internal clock went off at 4:00am for his next feeding. He then went back to sleep immediately afterwards and slept till 7:00am.

Wednesday- was such a wonderful day. Everett woke up in such a talkative mood. He was such a good boy and spent most of his awake time just babbling and smiling. I think we must have worn him out with all the loving and attention we gave him on Tuesday that he did spend most of this day sleeping. We even had a visitor that happened to be a registered pediatric nurse who had 17 years of experience drop by and she was commenting on how Everett's communication skills were so far advanced for a child his age. We care takers better be ready, for our little man is going to be talking our ears off in no time. The evening went well and once again we put him down for the night and he slept a full 7 hours before awakening for his morning feeding.

Thursday- What a sad day, we had to take our precious little one back home to mommy and daddy. This morning was a little hectic, for his ostomy bag broke and I had to replace it for the first time without Margot being there. I managed to do just fine but our little man sure had a lot of stoma paste all over him by the time I got through. :) We than left to meet our son Jamil in Arlington were he meet Everett for the first time. We then took Jamil to Margot's studio so she could spend time with her brother and also be reunited with her son.

Oh my gosh! We had such a wonderful three days with our grandson and the best part is we have such a beautiful, well behaved grandson. What lucky grandparents we all are.

Frances and Stephen

I'll add pictures soon. There are about a million, so I need to go through them a bit. Also, stay tuned for pictures from Thanksgiving with Grandpa Lynn and Grandma Sheri.

On the block for this week...today we are getting our pictures done for our Christmas cards. Monday, Everett has his MRI, so wish us luck. :)

xoxo
Margot

Bath Time Video Test

Everett had a great bath this morning, and then decided to do a little dancing. This is our first attempt at posting a video...wish us luck. :)

We've decided to add music to Everett's bath time as a regular thing. He seems to like it, and since his Mommy and Daddy have such eclectic taste in music, he was jamming this morning to Willie Nelson, Atreyu, Disturbed, 50 Cent, Avril Lavigne, Kenny Chesney and many, many, more. :)

We went to Grandad Lynn's for lunch today. Everett got to play with his Grandad and Grandma, his Uncle Logan and his MeeMaw. He got a little fussy, but overall had a great day. :)

Thanksgiving Day...

Well, Thanksgiving came and went. Everett got to meet some of his family that he has never met before. He was a big hit, and loved getting to see all of these wonderful people that have kept him in their prayers.

All of the little cousins loved him and wanted to pet him. :) He had quite the following of little people while we were there.

In true baby fashion, we walked in the door and he was whisked from our arms, and we saw him again right before we were getting ready to leave. :) There was just so much love for this little man reverberating through that house, it was probably healing for him in and of itself.

I would love to show you many, many pictures from Thanksgiving. Pictures of Everett with his Great-Aunts, his cousins, etc. But, I can't. Dylan has told me that he was concentrating too hard on the food and forgot to take any pictures. I am hoping that someone may have gotten some pictures and will send them our way. So, if you have them, please send. :)

But, luckily, we have one picture of Everett and his Mimi from when we first got there, before the cameras got stashed in a back room, never to be thought of again. :)

They look so cute together, don't they? Everett is turning into such a little man. :)

In lieu of more Thanksgiving photos, I decided to pull one from the archives that was never posted. This is from 11/3, Everett's first day at his Grandad's house. :)

(sorry if it is sideways. We are experiencing some technical difficulties)

Anyhow, on Friday we vegged at the house. There was no way we were going to the stores on Black Friday, and the weather was just too bad to really go out unless it was absolutely necessary...which it wasn't. :)

All of my boys cuddled up on the couch.

The little man, sound asleep. :)

That is all for now. Tomorrow we go to Grandad Lynn's to spend some time. We'll have to get Everett dressed up in his little outfit again and really take pictures this time so we will have something to share.

xoxo
Margot

It's been a while...

Sorry, it's been a while. Life has been a bit hectic lately, and I've been wanting to wait to post until we got some cute pictures of Everett to add, but it has been 15 days since the last post and I understand that the natives are getting restless. So, this will be a pictureless post, but there is a lot that has been going on.

When we last left off, Everett was going to be seeing the pulmonologist for the first time, and was going in for his VCUG.

Well, we went and saw the pulmonologist and everything basically looked as we suspected. His lungs are fine, there is just some concern because his trachea is constricted due to the TEF. The concern also remains about him asparating while he eats. So, Everett got a nebulizer and is now taking Pulmicort and Xoponex. He takes the Pulmicort every morning, and in the evenings as needed. The Xoponex is just for if he is having a really bad day, so we have not had to use it yet.

We had a small scare that we would not be able to fly to San Francisco for the holidays, but after giving us some instructions on the proper precautions to take, we were cleared for flight.

The pulmonologist wanted to see a swallow study done, so we added that onto the VCUG that Friday. Additionally, Everett was diagnosed with trachial and laryngial malasia. Basically, his trachea and his larynx are "floppy" and that is what causes what sounds like labored breathing.

The VCUG went well. They did it unsedated, and Everett did not enjoy having a catheter inserted one bit, but he was a strong boy for us and cooperated. And the verdict is.... no reflux in the kidneys. Yay! :)

As for the swallow study, the little man was SO hungry by the time they fed him the barium that he gulped it all down! They gave it to him in a water/juice consistency, formula consistency, and nectar consistency. While he ate, they used the really big machine to video tape it going down to see where it was going. It only went down his trachea once, and that was with the water/juice consistency. Not a concern. They went ahead and gave us some thickener to use on days when he is just having a hard time controlling the flow of his food. He is a bright little boy and he is able to control the flow of his formula depending on the thickness of it and the size of the nipple. Everyone kept commenting on how "strong" Everett is. We know. :)

Hmmm...let's see. On Monday, 11/12 Everett went to see the physical therapist. He has trouble looking to the left and is beginning to get a flat head on the right. We learned some great exercises and they played on the giant exercise ball, and Everett thought that was just the best thing ever! We will be going back again the Tuesday after Thanksgiving, and hopefully the caregivers will be able to join us to learn all of his new tricks. :) Dylan is supposed to be rounding everyone up, so we'll see. :)

On Friday, 11/16, we went to see the cardiologist. Everett's PDA is small and looks like it is closing up on its own. He has been cleared for all sports and to be raised like a normal little boy with no restrictions. :)

Yesterday, 11/19, ECI came in the morning. Everett has been accepted into the program, and by the school board. He is testing at the 4-6 month level for communication. :) The AI lady said that she has been doing this for 32 years, and he is a smart little fella. :) We thought it was just us. They will be visiting us once a month on a consulting type basis to make sure that he continues to track as he should. At this point, since she is only seeing him monthly, we will not actually have to enroll him in school yet. So, that's a good thing. :)

Then we were off to get his first Synagis shot. He did not like that at all, but it has to be done. He'll be getting it once a month through about April.

Then, we had our ENT appointment. He said that he does not anticipate Everett to have a lot of problems since he does have hearing in one ear. We will keep an eye on the right ear to make sure that it does not degenerate, but for now things look good. We will have another audiology scan done in February, and at some point, we will get some film of his ears to check out his biology.

Whew. Yesterday was busy. :)

So, that is all of our appointments so far. Thursday is Thanksgiving, and we will be spending it with Dylan's family.

Next week we will be getting our family pictures taken. :) We may post some. :)

xoxo
Margot

Wow...what a week!

Well, it seems impossible that it has only been a week since Bachan left us to the land of predictable weather! And, oh what a week it has been.

This week, we began the caregiver shuffle. And, we got to get everyone involved, since my angel at work is out of town visiting her grandbaby for two weeks. Yikes. :)

Everyone seemed to have a great day with Everett. We learned some things along the way, and a few more things got added to the diaper bag as the week went on. :)

Also, we packed away our newborn clothes...well, some of them anyway. Not really because they are too small, but because it is starting to cool down a bit here, so a onesie and socks just isn't cutting it anymore, and all of the footies are 0-3 month size. Right. So, Everett is 2 months old and can still fit in his newborn clothes. Our little man is still a little man. :)

So, caregivers, be looking out for some new fashions coming your way...oh yeah, and even though I swore I wouldn't, I couldn't resist and I went shopping this weekend for the little man. The temperature drops, and I can't resist. But, I am done for the season. And so there are even more super cute outfits coming your way! :)

Anyhow, besides the shuffle, we have had a fairly uneventful week. We are trying out many new ways of getting Everett's ostomy bag to stay on, and so far we are averaging about 3 days! Yay!! :) We haven't seen results like this since we were in the NICU. So, of course, now we are changing systems. :) But, we have to wait for our samples to come in first.

Oh yeah, don't lose faith in us yet. The posts are not going to be daily, but I will try to post on Mondays and Thursdays. Next Thursday, I probably won't because I will be working, but from there on out. So, look for posts then. We're uneventful these days, so twice a week should do it. :)

So, on the agenda for this week: Wednesday, we go see the pulmonologist. Hopefully he will have some sort of good news, or at least something that will help us with Everett's breathing. Friday, Dylan will be taking Everett to get his VCUG done. We are hoping that everything comes out clean in that regard.

And, now for the fun part, the pictures from this week:

On Tuesday, Everett went to Candy's house...can't you tell?

Lynn snaking in on Candy's day. :)

Cindy came over to visit, too.


Logan's the only one that lives in the house that we have a picture of holding the baby. :)

Rumor has it that Everett had lots of fun with his Mimi. Everett and Grandpa Mike listened to classical music together and Everett loved it. Then Everett, Mimi, and Grandad Lynn went outside and hung out on the porch. A good time was had by all.

On Wednesday, Everett went to see Lori and learn about the world of real estate. :) Sophie and Murray were a little skeptical at first, but eventually adopted Everett as part of their pack.

On Thursday, we met Grandpa Steve and Grandma Frances at my studio so that they could watch him for the day. Our friend Sam (who is expecting twins in June) finally got to meet him, and get a little practice feeding a baby. :)

Then they went to Aunt Mary's house and spent the day. Chris and Edith came over and finally got a chance to meet the little man.

See how natural Edith looks holding him? :) They're getting married this coming Spring, so they're next on Grandma Frances's radar for providing grandbabies. :)

Aunt Mary got in on the fun. Looks like a bit of burping action going on. :)

And Whitney got home just in time from rehearsal to cuddle up to the little guy. :)

On Friday, Dylan stayed home and watched the little man. Everyone was still in once piece when I came home, so I guess everything went well. :)

Saturday, Everett went to see Grandad Lynn and Grandma Sheri. They played, and walked, and watched Texas whoop some butt. :) Everett is going to be a Longhorn fan yet if Grandma Sheri has anything to say about it. :)

Whew. It was a long, exhausting week for the little man, but I think he had a great time all around.

xoxo
Margot