Birthday Party Picture

Devin had a Mickey Mouse Clubhouse party last Sunday and we also celebrated his Grandparent's 30th Wedding Anniversary! It makes the date extra special every year!

ENT visit at Children's Hospital

Yesterday, Logan and I went to see the Pediatric ENT at Children's Hospital.
As far as his hearing...they repeated the test he had last week with the same result, a fail. So, we were put on the day surgery schedule for a sedated auditory brain response test. They told me that due to is DS and his breathing issues he would need to be put out for the two hour test. At least this is the last test they can do, it will give us all of the answers we need. BUT, the soonest we can get in for this test is the middle of April!! I even asked if we could do it closer to home at a different hospital and they said no. We are on a cancellation list, so I am crossing my figures that they well call with an opening soon.
As far as his breathing...the doctor said that Logan sitting up to sleep sounded like it was working well for him, so we will look for a different sleep solution when he can no longer sit in the car seat. And as for his cough. He said it sounds barky because of Logan's narrow airway and is probably caused by extra saliva or drainage, but if he starts coughing more than only intermittently during the day and at night, we have to have his airway looked at. I guess they would send a camera down his throat to take a look. He could have one of many possible structural abnormalities in his airway. He named a bunch, but they all had weird names.
Good news...the hearing test they did perform showed that Logan is most likely hearing at some pitches, and it is possible that the test didn't detect reaction to the other pitches because of the tubes in his ears. So the doctor said there is a chance that he is hearing well.

This duck for the tub is working great for bath time! I was getting frustrated because Logan is too big for an infant tub, but can't sit up in the regular tub. I thought he might slip around in the duck, but the bottom is grippy so he can sit and lean against the tail (or it also makes a great head rest!)

My little man is 3!!

Wow! How time flies!
Happy Birthday Devin!
Please stop growing up so fast!

Logan has a new trick!!!

Logan has finally decided to move! All day yesterday he was rolling away!! I wish his PT would have been here to see him. I guess we'll just have to get rid of the blanket! :) He must have known Mommy really needed to see this.

If Logan could speak...

I found this on another T-21 Mother's blog.

THE CREED OF BABIES WITH DOWN SYNDROME

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

-Author Unknown

Picked to play a game: Love, Hate

Logan's been tagged by Nebraska to make a list of loves and dislikes.

Logan says:

I love to roll
I love to suck my thumb
I love my jumperoo
I love my family
I love fruit puffs
I love oatmeal
I love when my Dad blows raspberries on my cheeks
I love sleeping in the car
I love my bath
I love to snuggle

I don't like going to the doctor
I don't like cold food
I don't like getting my nose suctioned
I don't like getting my nose wiped
I don't like when my therapists won't let me suck my thumb

I 'm going to pick Chase, Riley, John to tell us there loves and dislikes. (Mommies can help!)

Scratch that last post!!!

They called me back...and we got moved up to Tuesday!!! The scheduler did not realize that she was talking to the Logan who the ENT doctor wanted to see as soon as possible. He wants us to come down soon not because of the hearing loss, but because of his possible airway obstruction. So finally, we may get the breathing stuff figured out.
I feel MUCH better now!

Pure Frustration

Logan can't get in for his appointment with the Pediatric ENT until February 2oth!!!! The first person I talked to told us the first appointment was March 24th, but I pushed to get him in ASAP. And the appointment is only to meet the doctor and have his initial evaluation. We have to go back for his "surgery" to test his hearing. (he needs to be sedated for the ABR, so I guess they call it surgery) I guess I will be waiting even longer to get the answers I need...

Hearing Test Results

Good news....the fluid has completely drained from Logan's ears.

Bad news....Logan did not pass his hearing test so he has some degree of hearing loss.

Logan did a great job sitting quietly for his hearing test. (Besides his noisey breathing almost messing up the test) At first, I was a little concerned when he cried for a good 10 minutes after the doctor looked in his ears and I had to feed him to settle him down. I think Logan has a hard time with pain. Every time he is in any kind of pain, it takes him FOREVER to get over it. Not sure why that is?? Anyway, after he settled down they did the test. It came back a fail for both ears so we will be going down to the Children's Hospital of Milwaukee for an Auditory Brain Stem Response Test and while we are there, Logan will see a Pediatric ENT Specialist to try to figure out Logan's breathing issues.

My Boys

I took Devin in for his three year picture today and we had a few extras taken that turned out really cute.

Sleep Answer ??

Ok....I thought I had solved a problem, but now I may have a new one.
I thought Logan was sleeping better at night since I started having him sleep sitting up in his car seat. He has always slept through the night, but I discovered he was not getting a good night sleep due to sleep apnea, his laryngomalsia or something (still don't know). He is awake more during the day but he now falls asleep in his high chair at dinner and sometimes at lunch too! He is taking two good naps each day and I would say he is down to about 14 hours of sleep, which is much more in the normal range for his age. It is frustrating...he has fallen asleep during dinner 3 nights in a row. I guess I am hoping he is just adjusting to the new sleep schedule??? I have so many questions for the ENT on Monday. Also, Logan still struggles to breath easily when he is sitting up at night. I am hoping I can get Logan a sleep study among other tests that were suggestions from other Moms. (Thanks!)
We are still getting his hearing tested on Monday, but I feel much more confident that we will
not discover a hearing problem. Since Logan's ear tubes I have noticed him turning his head to my voice and his name. OT was still concerned though because Logan was still not responding to rattles this week, so we will see.

Photo Jewelry Website

For the past few months I have been thinking about selling my photo keepsakes online. Where ever I go I get compliments on my bracelet and key chain. People always ask where I got them and when I tell them that I make them they tell me I should sell them. Well, I have finally made a website where customers can purchase items online. Check it out...they make great gifts. If I ever have time, I plan to create more items and have professional pictures taken of them. The jewelry looks much better in person. I got into this when I wanted a photo bracelet but didn't want to pay as much as most places online were asking. Enjoy!

Sleepy Logan

I am very excited because I may have discovered something HUGE!

When Logan was at the ENT a couple of weeks ago we talked about sleep apnea and the doctor suggested having Logan sit up in a car seat to sleep. At the time I thought that was a little extreme. I just thought about how uncomfortable that would be for him.
Well, since then I have been getting more and more frustrated with how much Logan sleeps (sometimes 18+ hours a day) and he tires easily so we weren't getting much exercise in. Two nights ago I was up at 3am listening to him sleep and I discovered that he was very restless and was coughing a lot. Over the 3 hours I was listening to him there were only short periods where he was still, quiet and not snoring. I was instantly very upset that I had not discovered this earlier. I think the sound of his humidifier in his room was stopping me from hearing how noisey he was. He also never cries at night.
So, for the last two nights he has slept in his car seat and I have seen a huge difference in him! Today, he has only taken one nap (about 2 hours)!! Usually by the afternoon he has napped for over 4 hours. Also, he did great for OT today. OT is usually the hardest for him because he really has no interest in using fine motor skills. Today, he only did a few little things for her, but that was a big difference from past visits.
I still feel like a mean mommy for making him sleep sitting up, but if he is happier and more alert during the day, it's worth it.
Logan will have his hearing tested on the 21st and I plan to talk more to the doctor about what to do for his sleep apnea and laryngomalasia.

Logan is 8 Months!

Happy Eight Months Logie Man!
You're our little angel!

Logan Ear Update

Logan has been feeling better today. He fell asleep last night before I could give him some Motrin, so I expected him to wake up during the night, but he has been fine. I haven't given him anything since last night. He has been pretty smiley...which is different for him because he is usually very serious. I hope he continues to perk up!

Devin News

It has been exactly 13 days since Devin has used his pacifier to fall asleep at night! AND, last night he didn't even ask for it. Now for my second new years resolution...potty training. That is going be much more difficult. We were making progress back in September, but then I got very frustrated and we have taken a break for a while. His 3rd B-day is coming fast, it would be nice to have him trained by then...

Ear Tube Surgery

Tubes are in!
Logan got his tubes this morning and is doing well. They put them in at 7:15am this morning. When the doctor came in, before surgery, he said Logan would be his biggest challenge of the day. (due to his tiny ears) When Logan came back to me he was extremely upset, in fact, he cried hard for an hour straight. The nurses said he was crying more than most kids because the doctor had to really dig around to get the tubes in. He only stopped when he was back in his car seat to go home. (he fell asleep) When we got home I gave him his max dose of Motrin and he slept for a few hours, then he woke up in a much better mood. He now seems to be back to normal, but I fear what he will be like when the pain meds wears off.
I had a bit of a scare when we arrived at the hospital because when the nurses heard Logan's breathing and his cough, they thought that the doctor would not do the surgery. It turns out they didn't understand that Logan is always a noisy breather and he is not sick, even though he sounds like he is. Every time I see a new doctor or nurse they think right away that Logan has RSV. They get all worked up about it and then it always turns out that he doesn't. He just is the way he is and we have gotten used to it.

Sitting, Rolling and Playing

Logan is still learning to sit. He can sit for 30 sec to a minute if he wants to. I am recently seeing a very stubborn side of him. Most of the time when I want him to sit, he just wants to lay down and suck his thumb. There's no stopping him when he knows what he wants to do! Also, he has finally started to roll tummy to back!!! But he doesn't roll more than once, so we haven't lost him under any furniture yet. He has gone back to tummy easily since he was only a few months old. Still, the only toy he likes is his jumperoo. He's not interested is holding toys or reaching for stuff yet. He got a really cool toy with a mirror (below) that he has reached out for a few times, but not much interest yet. We are hoping he feels better after his ear tubes tomorrow and likes to play more!

Inspirational woman with Down syndrome

Clip of Karen Gaffney from The Today Show
http://www.msnbc.msn.com/id/21134540/#22397724
This clip made me cry, but in a good way. This kind of story gives me so much hope!

New Year, New Adventures

"To new adventures".....life is still keeping it interesting, someone has to keep me on my toes.

I took Logan to an ENT on yesterday. I took him because his occupational therapist questioned his hearing and I was still very concerned about his cough (that has been around since September) and the fluid in his ears. I learned a lot from the doctor and now I wish I would have taken him sooner. Some concerns the doctor had was his breathing while he is sleeping (sleep apnea), fluid in his ears and his hearing. First, they did a hearing test and they were unable to get a result because of fluid in both of his ears. They did find that his ear drums are not responding the way they should to sound, but before they can find out if it is a hearing loss, they need to drain the fluid and put tubes in his ears. Two weeks after the surgery they well retest, then we will finally know if he is hearing well or not. We were also told that Logan needs to sleep with the head of his bed raised or in a car seat to help him with his breathing. I didn't realize that sleep apnea is pretty much a for sure thing for him when he is an adult and the doctor wants to eventually take out his tonsils and adenoids to help with that. I am concerned that the reason he sleeps so much is because he is not getting the proper amount of oxygen at night. I feel guilty for not thinking of that earlier...we will just have to wait and see if there is a difference in him after the tubes are in and his is sleeping upright.
He will have the tubes put in on Tuesday.

Glad to be home

I love visiting family and friends over the holidays, but I was surprised this year by how much work it is when you have more than one child. I am exhausted! We haven't been home for a full day for over a week now and we may need a week to recover. The boys crashed in their beds when we walked through the door this afternoon and I just hope they wake up before it is time to go to bed for the night.

My Favres on Sunday