Things that Make You Go Hmmm

We went to the Opthalmologist yesterday and she reported that Wyatt's astigmatism has gotten worse. I was kind of surprised as I haven't noticed his eyes crossing or him not being able to see things. I was so sure that she was going to tell me it had cleared up and that she'd see us in 6 months.

Instead, she said she also noticed that Wyatt has small optic nerves. (I sat there calmly and thought to myself "What the hell does that mean?") Well it means Wyatt has to get an MRI (brain scan). She wants to see if Wyatt's cleft extends into his brain - which is called a midline abnormality. She was surprised that no-one has ordered one yet. OMG! I just about freaked!

I did some reading and talked to some other moms and as far as I can tell, the middle of the brain is the hormone section. Which is why the eye Dr suspects an issue. Lack of hormones can cause lack of growth - including the optic nerve. She was also going off of the geneticist's concern that Wyatt isn't on the growth charts - perhaps he's missing growth hormones...hmmm

So I got my act together today and went to the Dr to get my referral to get my skeltal x-ray done, called the genetics lab to get the authorization for the blood work on Wyatt done, called teh hospital to make sure the MRI was scheduled.

This is a new problem I don't want to deal with. All I want to know is WHY does he have what he has! That's it - don't tell me you've found something. You know? But I suppose it would make sense if he had a midline cleft that he has midline abnomalities - no one warned me though. I hate being taken off gurd.

Anyway, I'll keep you updated.

A Day At The Park

A few days it ago it got up to 55F and everyone in Colorado Springs burst out of their doors to enjoy the warmth! LOL! Wyatt and I went for a walk to our neighborhood park to play. The first pic is the view of Pikes Peak from the front of our house. Its so beautiful! Note the remnants of snow on the ground!

Wyatt's Highchair Has Been Replaced Finally!

Many of you know that Wyatt is skilled at getting out of the restraints on his highchair. Last week was the final straw for me. He stood up, sat on the side of his chair and then did a backflip/bellyflop onto the floor! It doesn't matter what I do - he gets loose and he won't stay seated. Its a never ending frustration! The first pic shows how he prefers to sit, when I can get him to sit - its a sideways lounge - he's too cool to sit the proper way! Pain in my ass! Isn't the look on his face a cheeky one! He's saying "go one - try to get me to sit properly."

The second pic is of him in his new booster chair. He can't wiggle out oft he restraint - ha ha ha! I've beat him! Note that he took an entire bag of gold fish crackers and shook it until every last one was on the floor - just imagine me trying to get the pack from him and him wiggling and twisting and turning to make sure he emptied it before I could take it away. I'm sure it was his retaliation. He's a maniac! But you've got to love it!

Pilot in Training

When I was pregnant with Wyatt I said I wouldn't dress him in camoflauge or anything military related...here he is with camo pants, a bomber jacket, crew cut and black pilot sunnies! - and I love it!

I Love Spaghetti!

Look at Those Big Blue Eyes!

Walking Around Savannah

Toy Box

Holiday Update

I didn't realise I hadn't updated the site in so long. We moved into our new home on December 9th and left for vacation in Georgia on Demceber 18th. We decided not to get the internet connected until we got back in Jan. I know, I know - excuses, excuses.

Anyway, we went to see the surgeon on December 5th (Eric's birthday) and everything is fine with Wyatt's palate. What we saw was where the tissue falls away after surgery - or something like that. In any case, his palate looked good and we were told to not let him have anything in his mouth (like feeding utensils) for another 3 weeks and then his palate would be completely healed and he could go back to his old habits.

Wyatt is eating all kinds of food and was choking quite a bit on his solids, but has gotten used to his palate. I think having the plate causes him to have more of a gag reflex now though - that's fine!

We're having a great time in Georgia. The weather is wonderful and warm. Wyatt is loving all of the attention and has settled in very well. Hope everyone is having a great Holiday Season.

Maybe Its Not As Bad As We Thought...

Well 3 nights later I can truly say I don't know what the heck is going on in his mouth! The surgeon told us not to look - I didn't plan on looking! It just happend that I saw the "hole" when Wyatt and I were playing. Eric and I couldn't understand why there would be a hole along his gumline when he didn't even have a hole there to begin with. It was so deep and yucky looking compared to the other side.

Today I looked, and it seemed like it was less shallow. So now I'm thinking it was just where the muscle was harvested. If they remove tissue I suppose it would leave an area that looked like a hole - right? So now I'm hoping that's what we saw - just an ugly stage of the tissue growing back.

The surgeon said people often mistake the harvest sites as holes - he also said its quite possible that it is a hole. We'll find out next Tuesday. In the mean time I feel much better. Wyatt is sleeping through the night and he's off all pain medication. We started him on pureed foods tongiht and he'd enjoyed himself. Oh! He even signed "more" to me several times! That's a first for that sign. Damn I love that boy!!

I Am So Upset!

So from earlier postings you can see that we've been through a challening 1.5 weeks. The last 2 days Wyatt has been feeling much better and eating much better. I thought to myself this morning -we are half way there - almost done - alomost through with everything.

I noticed today that his was holding his mouth in a strange postion and thought that perhaps with his new tongue and palate that he was fixated on rubbing his tongue on his new roof.

Then tonight after his bath I was holding him in my lap and he put his head back with his mouth wide open and I saw it. A hole in his palate along his left gumline. I called Eric in to make sure I wasn't seeing things. He looked and he saw the same thing. Then I looked again - then he looked again. We just couldn't believe it. I've been crying for about half an hour.

So now we have to finish out the 3 weeks with braces and then...who knows? When will we have to take him back in? How will they fix it? Is it going to delay his speech and eating even more? What about the weight his lost from this operation - will he have to make that up before fix the hole? Is he going to be in as much pain? One thing is certain - he'll have to wear the arm restraints again for another 3 weeks. I HATE those things as much as Wyatt. I just can't believe it. I just can't believe it.

1 Week Post-Op

Well the first couple of days at home went really well and Wyatt even slept through the night. Then on the 4th day Wyatt stopped sleeping through the night and was so gassy that we couldn't stop him from crying. We decided to take him off of the codine as we were sure that was the culprit and it wasn't helping him anyway. We were told it could take a couple of days to get the codine out of his system. So we waited through Sat and Sun hoping that the change in medicine would help. It didn't. He's been waking up about 3 times a night screaming, he cries constantly and there are a lot of times I am at a loss for what to do.

I called the surgeon's office this morning becuase Wyatt's vioce is hoarse from all the crying. He just doesn't seem to be imprvoing the way they had explained. The surgeon's nurse, Maureen, told me to increase the amount of Tylenol and Motrin and the number of doses per day. If Wyatt hasn't calmed down by tomorrow I have to take him to the pediatrician to see if there is something wrong. She said he shouldn't be so cranky 1 week post-op.

I am stressing out! The instructions we are given are to prevent the baby from crying so that the sutures do not come lose. I can't stop him from crying! Eric went back to work on yesterday and my nerves are shot from the constant crying, worrying and lack of sleep.

1 week down - 2 more to go.

Here are a couple photos I managed to get of him today during a break in his mood.

The Surgery

So the stress started building on Monday when the surgeon's nurse told us that we'd have to take Wyatt to the pediatrician to make sure he was still eligible for surgery on Tuesday - he had a runny nose. I cried on the way to the Drs office as I didn't want the surgery to be rescheduled to next year some time. We were ready and as prepared as we could be to face the challenge. The Dr gave him the all clear and said the runny nose was from three pre-molars getting ready to break through. Whew!

Later that day we drove to Denver (about an hour) and checked into a hotel. During dinner, Eric realized that he's lost his wallet - thought he'd give me a distraction from Wyatt I guess. So we go back to the hotel and look around. Nothing. I called our bank and AmEx and reported his cards stolen.

4:30am Get up and get ready and drive to Denver Children's Hospital.
5:30am Check in with surgical department.
6:00am Wyatt is called back to be examined - again the runny nose is an issue.
6:30am He's cleared by the admitting nurse and dressed for surgery.
7:00am We meet with the anethesiologist.
7:15am We meet with the surgeon.
7:30am A man dressed in scrubs comes out and says its time for Wyatt to come back to the operating room. He willingly went with the man and I cried because I felt guilty and sad for him. I could just imagine how afraid he would be as they put him to sleep.
We went to breakfast and guess what... the man from the bank had cancelled my card too. Luckily, my AmEx was still working and the hospital cafeteria accepted AmEx.
8:30am We return to the waiting area after breakfast and get an update from the operating room. Wyatt is doing well and the surgeon is 20 mins into the procedure.
9:30am We get another call that the surgery will be finished about 11am. In the mean time Eric is on the phone with the bank trying to correct my card and figure out how to notify the credit people not to let anyone open an account with his social - since his military ID was in the wallet. Crazy!
11am (I think - its a blur) The anesthesiologist came out and said Wyatt was in recovery. She said she had a hard time intubating him due to his PRS. She said he may look great from the outside, but inside, his jaw is set way back and she had to be creative about getting the tube down his throat. Then the surgeon came out and said he was finished and the surgery went well. He was able to close the soft and hard palate and that he discovered something unexpected. I held my breath. I guess routine procedure is to put a stitch through the tongue and pull the tongue out of the way. When the Dr tried to pull it out of the way it didn't move - it was stuck by a piece of skin to the bottom of his mouth. So the Dr had to cut about three quarters on an inch under his tongue to "release" it. He said that even with the palate repair, Wyatt wouldn't have been able to talk with his tongue "tied" like that. So poor Wyatt got a double whammy.

When we went into the recovery room Eric and were shocked. Nothing can prepare you for post-op. It was horrible.

Around 12pm we were sent up to our share room. Wyatt stayed on Morphine for the entire evening and was on oxygen for a while, he had a feeding tube through an IV in his arm and a oxygen/heart rate monitor. He quickly got into normal range with oxygen and heart rate and the oxygen was turned off.

After getting to the room, Eric got a call from a friend - someone had found his wallet and had called a number on one of his business cards. Eric got everything back. Yay! We "slept" on a window seat by Wyatt' bed together. Our roomates were inconsiderate and talked on their cell phones loudly, kept the door to the room open and their TV on until midnight. They kept Wyatt awake and cranky.

The next morning the surgeon came in and said he didn't think we'd be going home since Wyatt wasn't eating from a bottle yet. We were having trouble getting oral meds into him as his didn't want to swallow. But later that day Wyatt took the oral meds, drank his alloted amount and the nurse said she'd trust us to take him home. She said "I trust you two" - implying that if it was anyone else she might not have let them leave. So we got home about 8:30pm and the rest is history. We've made it through the worst.

We have to go back in three weeks for a post-op check up to see how the surgery went. In the mean time Wyatt has to keep his arm restrainsts on 24/7 and he can only be fed formula with the special bottle. It'll be a challenge, but nothing like the last 48 hours.

Thanks for everyone's well wishes and support.

Post -Op

I didn't recognise his cries - they were so different and strained. I was so shocked as I realised that this stranger that the nurse had lead us to was my son. I wondered to myself if repairing his palate was worth all this misery. I knew it was, but his pain made me second guess myself. I felt helpless.

2 Days and Counting

I cannot believe how fast "the day" is coming up! We started practicing with the post-0p bottles yesterday. Wyatt doesn't seem too bothered by the change. Although , they are a little tricky since they are squeezable and Wyatt loves to squeeze them really hard with the tubing pointed at me - I get drenched in formula LOL. Cheeky little buggar!

A Big Week For Eric

V.P. Cheney visited Ft. Carson last Friday to pump up morale. He spoke inside one of the hangars out at the airfield and Eric got to listen to him speak.

Also, Eric got promoted to CW2 or Chief Warrant Officer 2 last Thursday. Wyatt and I went out to the airfield for the promotion and I pinned the new rank onto Eric (its the silver rectangle with two black dots on it). Eric was also just raised to RL1 status, which means he can now fly with other pilots that are not instructor pilots. Unfortunately, his first flight as a full fledged pilot will be with his commander! LOL He'll do fine - he knows his stuff.

Eric will be deploying to Arizona in January for a month. The unit will be helping the National Guard with patroling the boarder.

Playing With Leaves

It was a gorgeous week of weather. We had highs in the 70s and lots of sunshine. Wyatt and I went outside toplay in the yard and get some fresh air.

Counting Down

15 days until Wyatt's palate repair. I am so nervous.

I've already booked a hotel in Denver, called the insurance company to make sure the authorizations are through, booked a hospital tour and ordered special bottles for post-op and pre-registered Wyatt.

I keep thinking there is more I should be doing, but there's nothing else. I just have to sit and wait for the day to come. I'm dreading post-surgery. Poor Wyatt. I just feel so bad for him.

Here's what I know right now.
Nov 13
We'll drive to Denver and spend the night in a hotel.
Nov 14
5:30am check in at the hospital and meet with anethesiologist. We're not allowed to give Wyatt his morning bottle - he has to have an empty stomach before surgery.
7:30am Wyatt will be put "under". One parent will be allowed to stay while this is done. The surgery should go for about 2 hours. We'll spend the night at the hospital. We will be sharing a room with another patient. There is only room for one parent by each bedside. Eric's talking about sleeping on the floor. I don't know what we're going to do because neither of us is going to want to leave the room. Then we'll have to drive home (1hr) and go to base to get pain killers. The hospital doesn't issue prescriptions.

Luckily, I have CleftAdvocate and they have supplied me with a packing list for the hospital and ideas to keep Wyatt happy. At least I feel as prepared as possible - I guess.

Can You Believe Its Snowing?!

We had a blizzard today. This is the second time it has snowed in a week. Tomorrow its supposed to be in the 50s and sunny again - thank goodness!

Neighborhood Snow Scenes