A little Better

Yesterday was a little better than the day before.  I can see improvement in Ethan.  He slept really well Saturday night.  And slept more than normal during the day on Sunday.  But he also was walking on Sunday.  He did not want to walk at all on Saturday.  So this is good.  He also played a little and danced a little and chased his sisters a little.  BUT, around 8 PM last night, we noticed his energy level come back.  Not a good thing, when mom is exhausted and just wants to go to bed.  :-)

Last night he did not sleep as soundly.  He was up several times crying.  He is not comfortable.  And I think his little tummy hurts.  We gave him more meds around 2 AM and he did go back to sleep.  But it was not a sound sleep.  Of course, he's sleeping now, when mom has to get up to get his sisters ready for school.  :-)

Here are a few pictures from yesterday.  They are not the best quality.  They were taken on my cell phone.  But you can see how much better he is looking.

Thanks for the prayers!  We can feel God really looking after our precious boy!

He passed out on the floor Sat night

Palate Surgery: Complete!

We are home!  Ethan did well during his surgery.  We have not been able to look inside his mouth. But the surgeon said everything looked good.

Ethan had a rough day yesterday.  A lot of screaming & fighting.  He was mad.  Finally around 8 PM he calmed down and slept for a few hours.  He slept off & on during the night.

Today, he has been much happier.  Still not 100%.  But better than yesterday.  He's not fighting us as much.  And he's drinking liquids and wanting to play.

Thank you for the prayers!  Now we need to pray for his recovery.

Before surgery

After surgery

It's Surgery Time

Well tomorrow, Friday Sept 17, is the big day.  Palate surgery day.  The day we've been waiting for for 8 months.  Yes, can you believe it?  Saturday will be 8 months since Ethan was placed in our arms forever. 

Please pray for us while we help Ethan recover from the surgery.  He's a very strong willed little boy, so we know that there will be a lot of yelling, fighting, and screaming from Ethan over the next few weeks.  Mainly because he won't be able to eat.  And he LOVES to eat. 

Surgery is at 7:30 AM.  I'm not sure how long it will last.  But we are spending the night this time at the hospital.  Bill & I will both be staying with Ethan.  They anticipate us being discharged on Saturday. 

Thanks for praying with us.  I will update the blog as soon as I can.

Love & Hugs,
Debbie

Learning New Things, Teeth Falling Out, Mother's Day Treat & Surgery Date

This week has been good.  Ethan is happier this week.  Praying the happiness will continue. :-)  We had an evaluation this week with a speech therapist and also a psychologist.  Ethan did great. They were impressed with how well adjusted he is, and how on target he is for his age.  The only thing we need to work on is communication.  Which we already knew.  So there were no surprises when we left.  Ethan will be getting speech therapy soon.  We're just waiting for it all to be scheduled.

They told us that we need to work with Ethan on saying some things.  They want him to be saying mama and dada (or sounds that represent us) within 3 months.  Well do you know what this stinker did?  He said MAMA that afternoon.  I was changing him and he said "mama" and laughed so hard.  He knew what he was doing.  And he knew that it would make me happy.  He's done it a few times.  And only when I'm changing him.  Since that moment, he has started saying "ow" and "u" (short u) for up.  He will also say "hi" when he wants to.  He grunts a lot and points at things.  So he's starting to understand language.

Ethan also figured out how to get up on the couch.  We watched him throw his leg up.  He's been trying for a little while, but he's so short, so it's harder for him.  Well, this day we were watching and he did it.  He was laughing so hard because he was so proud of himself.  Little man figured out how to get his little body up on the sofa.  So now we can't get him down. Of course, I'm nervous that he's going to fall off.

Jadyn has had a wiggle tooth for weeks.  she is terrified about pulling it.  She's been working at it and yesterday we noticed how loose it really was.  It needed to come out.  Well Jadyn was scared, and she cried so hard.  We've never seen her cry like this.  It was heartbreaking for me.  Well we had to get it out so we tried comforting her while Bill tried to get his fingers around the the tooth.  When he looked at it, he noticed the tooth next to it was about to fall out too.  She had 2 that were ready to come out.  She finally calmed down enough for Bill to get the 1st tooth out.  She was so happy.  After rinsing, she let Bill look at the 2nd tooth.  He barely touched it and it fell out.  We made a HUGE deal.  Jadyn was so happy.  Last night the tooth fairy came and gave her $2.00.  She was thrilled.

Today was Muffins for Moms at school.  I went to their classes. I spent about 10 minutes with Jadyn.  She gave me a muffin & juice.  We ate together and I read the note she left for me.  Then I went over and ate with Abby. I saw her note too. Precious!  The title of the letter is "My mom is the most wonderful mom in the world!"  Here is what Jadyn said:
-My mom's name is Debbie
-My mom has brown hair and blue eyes
-She is 16 feet tall and weighs 19 pounds
-My mom likes to eat chicken
-My mom is happy when she hugs me
-But I know she is really angry when we do bad things.
-My mom's favorite tv show is Biggest Loser
-My mom is smart. She knows all about books
-If my mom would have one wish come true, it would be to have a candle
-I love my mom because she helps me with homework

Here is what Abby said:
-My mom's name is Debbie Byrne
-My mom has brown hair and blue eyes
-She is 12 feet tall and weighs 12 pounds
-My mom likes to eat pizza
-My mom is happy when I hug her
-But I know she is really angry when I lie
-My mom's favorite tv show is Big Loser
-My mom is smart. She knows all aobut if Jadyn & I are lying
-If my mom would have one wish come true, it would be for a clean earth
-I love my mom because she is cute.

I just love their answers.  And I love how they answered a few the same. Made me smile!  They also planted a plant for me in a decorated flower pot, and made me a ladybug card.  I had a great morning with the girls. Very special moments

I called the surgeon again yesterday.  Apparently the surgeon & orthodontist had a meeting Tuesday night.  They have decided to do the lip repair surgery at St. Joseph's Children's Hospital. I did not understand why we are going to a new hospital.  The receptionist said that the orthodontist is going to be putting in a new appliance in Ethan's mouth. They will be taking the Latham out.  They need to have something in his mouth so it won't collapse.  So, the orthodontist tech will take a mold of Ethan's mouth at the beginning of surgery, and then go to the office (which is close to this hospital) and make the appliance. The surgeon will then do the lip repair.  Hopefully by time he is finished, the appliance will be ready to put in his mouth.  The surgery is scheduled for Friday May 28 at 7:30 am.  3 more weeks.

So, this has turned into a long update. :-) I guess a lot has gone on this week.  Tonight I'm going to the high school band banquet with Tiff.  I'm excited to spend this time with her.  Of course I will take my camera and hopefully get some good pictures of the "big" kids.

Until next time....

2nd surgery-Complete

Yesterday Ethan had the Latham appliance put in his mouth.  The surgery took about 10 minutes.  He did great.  It took him longer to wake up yesterday than it did the week before.  He was upset, but not as angry.  He slept most of the time in recovery, and this week he wanted Daddy. 

We (meaning Bill) have to tighten the device 4 times a day. This is something we were not aware of, until after the surgery.  I was nervous about this, because Ethan fights us just to put ear drops in his ear.  Well, Ethan still fights, but not as hard. And Bill is able to tighten it.

Ethan did not sleep well last night. Cried out a lot between 12-7 AM  He was not in pain, he just did not want to sleep. 

He's doing great today. Is eating and drinking. He's playing.  It does not seem to be bothering him.

We have an appointment with the orthodontist on April 26 and then the surgeon on April 27.  They seem to think we'll be having the lip repaired in a few weeks. 

Here are some photos from the hospital.  Thanks for your prayers!

First Surgery Complete

We are finally beginning with surgeries for Ethan.  Today's was not too bad.  But he was still mad about it.  He does not like anyone touching him. So he screamed and pushed them away (or tried to). 

We arrived at the hospital at 6 AM.  They got us signed in and called us back around 6:30.  Several people had to check Ethan out, and ask us the same questions over & over again.  No big deal. 

Around 7:30 we are still waiting for the 2 doctors to come in to say good morning. I guess they have to see us before they can take Ethan back.  At 8:00 we finally saw the ENT and Surgeon and we were walking Ethan back to the area to say goodbye. 

At about 8:30 the ENT said she was done.  Ethan had an infection in his left ear.  It "erupted like a volcano".  She said the right ear had fluid but was not as bad. 

We were then given a pager to walk down to get something to eat.  We did not even make it to the food area and we were paged.  The surgeon was finished.  So we walked back and he said Ethan did great.  They will put the Latham in next Friday. That will be a little painful since they are screwing it into his palate. 

We were given another pager to go eat while he was in recovery.  We were able to order our food, sit down and get ready to eat when the pager went off.  So we go back.  Ethan woke up fighting. So I got him and calmed him down. We were able to give him some apple juice and then pediasure.  He was then happier. 

At 9:30 we were discharged.  Ethan did great!  He was still very tired. He fell asleep in the car on the way home.  He slept till 11:30.

I asked Ethan if he could hear me.  He shook his head "YES".  :-)  So sweet! 

Here are some photos from this morning.  We'll be back next Friday.  Keep praying.

Tubes

Today we are taking Ethan to the hospital to get tubes put in his ears.  I have heard from several friends that once the child receives the tubes, they are happier.  I'm praying this is the case for Ethan.  Not that he is not a happy child, but he is frustrated.  I know that is why we have a lot of screaming during the day.  Praying that this morning will go smoothly.

While they have him under, the surgeon is also coming in and molding  the top jaw for the Latham device.  Not sure how long this will take, but I can't imagine very long.  Next Friday they will be putting the device in, so we'll have another early morning next Friday. 

The hospital told us to plan on being there for 5 hours.  From check in to check out.  We have to be there at 6 AM.  That means waking up at 4 AM and leaving by 5 AM. Well I've been awake since 2:30 AM.  It's going to be a very LONG day.  Thank goodness it's the beginning of Spring Break this afternoon. 

Here is a photo I took of Ethan the other night when I went in to check on him. I love how he snuggles with a stuffed animal.  This bear was given to him by Nanny (Bills mom) on Easter. 

I will try to update the blog later today with photos from the hospital, and with a report on how he did.

Until then......

Surgery Updates

Hello! I wanted to give you an update on the doctor's appointments.....

We have had to reschedule his MRI that was schedule for tomorrow (3/19).  The hospital called to confirm our appointment and then realized that his lip & palate have not been repaired.  So we can not have the MRI done at the outpatient office.  We have to go to the hospital.  The earliest they could get Ethan in is April 29th at 11 AM.  The MRI is not something that needs to be done right away.  It's just to check to make sure everything is okay with his spine & head because of the sacral dimple that he has.  He's walking (and even running) so we're not too concerned.

We have met with his ENT and Surgeon this week.  We had questions concerning the Latham device that they will be inserting into his mouth to move his jaw bone closer together.  We were able to have plenty of time today to talk to the surgeon, asking him what the benefits are of doing this vs not doing it etc.  He is very nice and we were happy with his answers.  He said that this will cut out a few surgeries in the future.  He also told us, that the device is not as scary as what we've seen online.  That it is metal in the back, but they do not "screw" it tighter. They use rubber bands.  He also said that he thinks Ethan's jaw bone will move quickly and hopefully within a few weeks of having the Latham in, we will then be able to repair his lip.

April 9th we are scheduled to go to the hospital at 7:30 AM to have tubes put in his ears and to have the Latham device moulded so they can make it.  Then in a week or so after it's made, we will be back to have them insert the Latham into his jaw.

I really like his surgeon.  He's very nice and took the time to just sit and listen to our concerns.  He explained his answers where we could understand him.  I also liked him, because he did not charge us our copay today. (our ENT did charge us the $20). Not sure if they forgot, or if he just did not want it.  AND, I like him, because next week he's going to Peru to do lip & palate surgeries on children. 

We will keep you updated on all future procedures.  We are praying that Ethan will only need 4 total surgeries; lip, bone graph, palate (all this year) and nose repair (that will be when he's about 17 years old).

Ethan is having a wonderful week.  Full of smiles & giggles.  He has mastered the sign of "more".  But we think he thinks that means "eat".  LOL  He will do "more" and then shake his head yes, like "Yes?"  He will raise both hands up when Bill yells "touchdown".  He loves to give "high fives".  He even gave Bill a real kiss the other night.  He loves to go bye-bye.  He gets so excited when we put his shoes on.  He will copy us if we lift our feet, or stomp our feet. He blinks when we blink.  He growls like a dinosaur when he's playing.  He even made "car" sounds when he was riding his little toy car.  He loves to climb and roll off of things. He has learned to stand on his little car with no hands and balance himself without falling. He's such a little boy!  I love it!  :-)  OH, and he has this fascination with needing to have all the cabinets & drawers in the house closed.  If he notices that it's even cracked open, he runs over to close it.  Today he turned 17 months.  Today also marks 2 months since Gotcha Day.  He has grown so much in these 2 months. 
Thank you for your prayers & support.

Prayer Request

March 16-Meeting the ENT for Pre-Op
March 18-Meeting the Surgeon for Pre-Op
March 19-MRI of head & spine (not cleft related-will write about this soon)
April 9- Tubes put in ears & Latham fitting 7:30 AM All Children's Hospital

More request: That Ethan gets and stays healthy.  That his cough will go away. That he can stay ear infection free.  

Thank You!

A little update

Well I found out today that I needed to call Ethan's surgeon to schedule the latham fitting. So I did.  They told me they are going to call the ENT to schedule it with her, because Ethan will be getting tubes put in at the same time.

So I waited a few hours.  The ENT's office called me.  She said that the surgeon has scheduled Ethan to go to the hospital on April 9th.  So the ENT wants to see Ethan before that date. 

So we go to see the ENT on March 16th. 

I have not heard from the surgeon yet. So I'm not sure what time we have to be at the hospital, how long we will be there etc.  I hope we hear from them soon.

Keep checking for more updates.  Also check his adoption website too. 

Until Next Time.....