update friday night

Esias is a little more comfortable and is breathing better, his sats are staying in the 90s. He is still not allowed to eat anything (NPO) so we are waiting for his next dose of pain meds (via suppository) before he can go to bed.

The docs think he can eat tomorrow, I hope it is early on in the day because this boy is TIIIICKED! He wants to eat. It breaks a mother's heart to not be able to provide the food that is their comfort and especially when it's the way we've built trust with each other! It is hard! Though obviously it is for the best right now, because we cannot irritate the airway and cause swelling whatsoever.

Thanks for the prayers- for those of you who do now know, my older sister is also here in the hospital just a few hallways down due to an exacerbation of her MS. I am glad we are so close. I covet your prayers over her and her family as well- she is doing better now but needs to be here a few more days. Thanks everyone.

Out of Surgery

Esias is out of the OR and is recovering. We have not seen him yet, but the doctor told us everything went well and he was conservative in cutting the tissue away since "we can't put it back on." :) he did have to have a breathing tube inserted because his sats kept going down when the doctor was lasering. But that will be removed as long as he is breathing ok when he is awake. We will be staying the night to see how he does with breathing and eating. We will be at Children's.

Here is a picture from before surgery...

In the OR

He's in the OR right now. We came at 630am and they had him in there a little before 8am. We did not end up escorting him back to the OR because i was afraid he would be more mad. He definitely knew something was up, even last night. He did not go to sleep until after 10pm.

I notice a fear in his eyes which I don't like to see. I told Dan, he looks like Yabetse from our waiting pictures...not my happy smiley boy Esias Tesfaye. It's ironic too because he has to be called Yabetse at the hospital since that is still his legal name for a few more months.

We have no news as of right now but expecting news soon.

Deuteronomy 31:8
The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.

August and September Photos

Esias is learning to walk thanks to this great garage sale find! Thanks Sterners!

This next set of pics is from Elly's birthday week. We let her open one gift the night before her big day, and the rest from us in the morning. Eden even got to open one (I wrapped up their school shoes! Kill two birds with one stone.)

Eden thought these were pretty nice "80s shoes."

Esias enjoyed the repurposed wrapping paper.

Me and my brood.

Elly's birthday morning. We ate powdered donuts (her choice!).

All Elly kept telling us she wanted was "A pegasus pony and a hot air balloon." Problem was, she wanted the real deal. Thanks to Ebay and Craigslist, we got her some cute pegasus ponies and a little girl that rides them. Tiel made her a hot air balloon toy that I did not get on camera.

This Barbie, swan carriage and pegasus pony cost us $3 on Craigslist. We had to drive a few miles to get it, but it was the biggest hit of the day!

Nia and Marcus came over and we video-chatted Grammy and Papa for the cake.

Happy Birthday to you...

The kids with their birthday and unbirthday gifts (thanks to Brynn and Will).

Hilarious.

And they are reading Teen Titans. Even funnier.

Elly's FIRST DAY OF SCHOOL! It went great.

With Luke and Gracie

And Hannah too...

Elly would not stop picking her nose. What can you do?

Esias manhandling his bottle at the Oto. appt. They gave us one of those preemie bottles and I thought he looked hilarious with it!

Answers and a Plan

Thanks to you who have been praying today. Elly's first day went well (besides the fact that I forgot her tuition and the note saying who would be picking her up!). She enjoyed herself and drop off was great! No tears. She is a good girl!

Esias' appointment was good. We started with another chest x-ray (this is the 5th one) and then a swallow study. I got to be in with him in the swallow study and it was neat to watch his anatomy work. It's miraculous, really. We did see the aspiration we thought we would see. His milk would go from the mouth to the throat and then pause at the epiglottis while he took a breath and then he would suck some down into his windpipe. This was only present during the liquid feedings, his spoon feedings went down fine. They aslo did an esophagram which took THREE adults to hold him down so that the doctor could get a look. It was sad but funny- here comes this little dude looking rather unassuming, and then he gives them all a run for their money! After this, we could feed him formula again (he had only had barium to that point and was tiiiiiickkkked).

Next we were sent up to Otolaryngology to see Dr. Manoliagod. He is great. He did a funny scope up E's nose (with just a local anesthetic) and was able to see the huge adenoid and the laryngomalacia. Apparently there are three types of this defect, and Esias has all three! Way to go, son! They told us that Esias seems like a good candidate for surgery based on the swallow study and the scope. So, we scheduled it for this Friday first thing in the morning. They are going to put him under and then use the rigid scope to make sure it all looks as they think it does. If it does they will trim out the tissue and reshape the epiglottis, thus creating more room in his airway. I am not super excited about him going under anesthesia and having his throat hacked up, but if all goes as expected this should help him grow and develop more normally. As much as we've seen him improve, he is still considered failure to thrive. We will be in the hospital ICU Friday and Saturday and perhaps into Sunday depending on how he does.

Please pray for Esias-
-That his airway would stay open
-That he would not have excessive swelling or need a feeding tube
-Wisdom for his doctors, nurses, and us on all these decisions
-The girls- who will be staying on their normal schedule with Grandpa Lee watching them

Thanks all!

At long last...

We (and by we I mean Dan) made the video from the day we met Esias! Yay! Without further delay...

Esias Tesfaye Grimes!



or watch it here in a larger view...http://www.youtube.com/watch?v=TkQnv2gp810

Tomorrow- Big Day

Tomorrow is Elly's first day of preschool (M-W-F mornings) and after we drop her off, Dan and I head straight to the U for more tests on Esias. His breathing has become more labored again (not as bad as when we first got to him, but not as good as it has been) and he is choking more and more on his foods. Yesterday and today he has been choking on his solids even, which is a new symptom. We are trying to catch his choking episodes on our video camera because they are hard to describe. He'll just be drinking along, and then suddenly it sounds like he sucks milk down the wrong pipe. Then he coughs and gags and gasps for air (which makes him cry, which makes him gag and cough harder) and it sounds like he can barely get any air down. After a couple minutes or more, he calms down and then is mad because we have set the bottle down :) Last night, he choked so hard he actually threw up and then fell promptly to sleep from sheer exhaustion. The feeding issues are starting to get to me, I am frustrated that he is not able to eat normally and feel relaxed. Eating is such a good part of our bonding time, but it gets jolted to a stop when he starts choking. I realized his health could be worse and that all in all he is doing SO well, but as his mom I just want him to have a :normal: day. :)


Elly seems more excited about preschool than she was a month ago. We had a orientation last week and then a playdate with some of her future classmates and a one on one playdate with Grace who is also in her class. So at least when she gets there, she'll know a few kids. Not to mention the Ramsey kids- Luke and Hannah- who just live a few doors down. I hope she doesn't throw a fit because, like I said, I will be at the U and I can't come back for her! If you have room on your prayer list, throw up a couple for Elly and Esias!

Elly

Elly is in a great phase right now. Yes, she still throws the occassional fit and sometimes sleeps in the van right at 6pm and then won't go to bed til after 10pm...but still, she's in that adorable preschooler age that I adore.

Case in point: Today we were reading a Blue's Clues storybook together and Blue said, "Do you like these cupcakes? I put the icing on myself!" Elly looked amused, so I told her "Icing is the same thing as frosting." "OH!" she exclaimed. "Then why did he put it on him?"

And the other day, she said, "Esias loves his cloth diapers. They are so soft on his bum." And I said, "And they are good for the Earth." To which she replied, "How can they be good for the Earth? The Earth doesn't wear diapers!"

A few nights ago, she was playing with Noah's Ark and yelling to herself, "We're all gonna die!"

She's got me in stitches most of the time!

A Conversation with Eden Lily

Most of the time when I post here about Eden, it is because she has said something hilarious. But she also has a very sensitive, emotional, and highly intuitive side. In the car today Eden had talked alot about Esias' throat issue and asked me to tell her if "he passes away." Then Esias bit his tongue badly and bled quite a bit. Eden is a little squirmish about blood anyway, and then Esias started choking on his bottle (which he does normally)and that upset her as well. I could tell she was worried so I snuggled her in (while sopping up the blood from E's tongue with my shirt!) and asked her if she was worried about her brother. I told her that I understand her worrying because I do it too, but that if she worries she can tell God she is worried and tell Him that she knows He is in control and that she is ok with what He chooses to do. She said, "I know that God is in control, but sometimes I don't like what he chooses to do. Even though I know that when He chooses it it is because it will make us happier. Like when He took Jaren to heaven, maybe He was like, 'this baby is gonna be really sick, so I don't think I should give him to his mom and dad because they would be very worried' so He just took him to heaven right then. And then He decided to give you a new baby who wouldn't die but would have some problems to deal with." I am amazed at how much she understands at 6 years old. It also humbles me and makes me realize that she is soaking in all my emotions. She amazes me daily.

New Moves

Yesterday

I have been avoiding this topic, but it is cathartic for me to write and express my feelings so I am going to go ahead and do it. Sorry you guys have to be subjected to it, but I might feel better!

Yesterday was referral day for my sweet Jaren Mikiyas Yared. I didn't realize how it would still affect me, and to be honest, it sort of snuck up on me. August was a crazy month and September started with a Elly's birthday. Then I sort of forgot about it. Until yesterday, when it hit me like a ton of bricks. This past week was stressful for a number of reasons and that didn't help any. It's hard for me to admit that I am still grieving. How can I be grieving, almost a year later, a child I never knew, never touched, never held? I don't know. I just am.

I believe God is good and I know that He had a plan in all of this. I don't doubt that at all, and when I look into the sienna colored eyes of my new son, I know that His plan is unfolding before me. But still, my heart aches for my other son. To be quite honest, I want to love them both.

My soul finds rest in God alone. "Esias" is Isaiah in Greek...and I love that because Isaiah is my favorite book, and probably the book where I find the most comfort from the Lord. This one sticks out at me today.

Isaiah 66:13

As a mother comforts her child,
so will I comfort you;
and you will be comforted over Jerusalem.

Esias is Signing- UPDATE

Ok, so it has been brought to my attention (by Kim and Angela, thanks ladies!) that many babies are NOT actually saying words by 14 months as I posted previously. I guess there is a much great spectrum of normal verbal development than I was aware of! We must have early talkers, as Eden spoke in sentences around 17 months and Elly was about 15-16 months. My dad will tell the story that I was singing an entire song at 13 months. Not that it necessarily makes me a genius, but I'm just sayin'. :)

Anyhoo, I found this great site that allows you to browse signs and find the ones that work for you and your babe. We were just giving E-man a bath and I quickly looked up the sign for "bath" so that we could sign it with him. Easy peasy lemon squeezy.

Esias is Signing!

We used the Baby Signs technique for communication with both the girls, but they were so verbal so early the signs were quickly replaced by their words. We just recently started using baby signs with Esias and he is catching on quickly! It's no surprise, most 14 month olds are saying several words by now. While he is not speaking yet, his brain is definitely that of a 14 month old! But those pesky vocal cords are sort of impaired by his laryngomalacia. So, until that is fixed and healed, we will most likely be doing lots of signs with Esias. He LOVES it. We've introduced milk, more, bye-bye, hi, and all done so far. I also say "baca" with "all done" since that is the Amharic word and I love that phrase (and had to use it a lot with Birtukan's amazing cooking!) He imitates most of the signs and can use some of them on his own, but he mostly will just do it after we do it. I have no doubt though that after a couple weeks of mommy being consistent he will have these down. I need to learn some more signs! I had a book (maybe it's in the storage room?) once that showed lots of signs, but lots of them were of no practical use (rhinoceros, etc.). Anyone used a good Baby Signs system lately?

Edenisms, Part 32

The other night, Dan was reading all three kids a book about Ethiopia. Esias was getting fussy; it was close to bedtime. I came in and said, "What's a matter Buddy, do you want your bah-bah (bottle)?" Eden piped up, "He wants his Addis A-Bah-Bah!!"