Geneticist Appt Update

The appt with the geneticist was . . . well, it was interesting. I got the feeling that she was quite excited to have Brayden as a patient, and she said that while she had many "22 kids", Brayden was her first Guatemalan patient. The clinical diagnosis is Velo-cardio-facial syndrome, even though he doesn't really have the normal facial characteristics. She said that it presents differently in people of African descent, so maybe there are differences in Hispanics. . . I wouldn't be surprised if she's researching it right now ;) He does have, in the dr's words, "a great 22 nose". OK, what does that mean????

Anyway, we didn't really learn a lot of new info. We are basically doing everything that we should be (treating the ToF, speech therapy), but we just know some new things that we should look for and be prepared for in the future. She is sending him for a renal u/s next week, since there is a very high % of VCFSers who have only one kidney or have kidney differences. That is scheduled for Thursday, so I'll post about it next week. Of course, we had to make another trip to the the torture chamber (aka the lab). . . after 30 minutes, they gave up and told us to come back another day. So, when we go to the ID appt on Monday, we have to go back and try again. The geneticist is testing his calcium and magnesium levels, and she wanted to do a chromosome check to make sure that his other 22 is normal. We'll go to the lab after the ID appt, b/c I'm sure that guy will want to test something, too. At this point, I think they need to find a new way to test for things, b/c Brayden's tiny, deeply hidden veins are not participating!!

Bray Boy has had a runny nose for a few days now. Please don't judge me for these pics -- you absolutely cannot keep this kid's nose wiped!! He hates it, and he will fight you with everything he's got :)

It's tough being a boy. Sometimes, I just need a power nap. . . I'll finish these apples in a few more minutes.

What do you mean? I don't need a bath -- snot, drool, and bed-head hair look good on me. . .

Momma doesn't like it when I work on the laptp, but it's MY blog! She needs to recognize my position as editor!

How I'm Feeling --

First of all, I took the day off work today to go to Brayden's appt, and I slept in -- that feels pretty good!! I know that I said the appt was on Thursday in my last post, but I got mixed up. The geneticist appt is today, I go to the dr tomorrow for a glucose test, and the Infectious Disease appt is Monday. I'll try to post later today with any new info that we get. Now on to the post . . .

Several people have asked through e-mails, comments, and in person -- "How are you feeling?" Last week, I had a birthday, and several people asked "How does it feel to be getting older?" So here's my answer -- I've never felt better!! I mean, life really has never been better :) Brayden is home, and although is drives me crazy sometimes (hitting the TV, pulling on the blinds, rolling around like a mad man when you're trying to change a dirty diaper, refusing to drink milk out of a cup, etc), he is the most incredible blessing! When Michael, Brayden, Lillith, and I are all together, I just look around and say "we're a good little family". It's true, we make a good family. We all need each other, and we all love each other. To think that God is blessing us with another child (and hopefully more) is just great! Pretty soon, I'll be saying "we're a good big family".

Anyway, now that I have that out of my system. . . on to the stuff you really want to see - pics of the boy! Bray's cousin, Jordan, had her first cheer competition of the season this weekend. Her team won 1st place, and she was so excited! Brayden LOVES a cheer competition, by the way. It is loud and crowded, and he just soaks it all in :)

Here's Jor with her medal -- I know everyone is jealous of her blue eyeshadow!!!

Jordan is such an awesome cousin to Brayden Mynor. She is the first one who ever made him laugh, and she still does it everytime he sees her!!

Way to go Jor-Jor!! Brayden has a sign for Jordan. He claps his hands if you say her name (even if she's not there). I think it's b/c he's so proud of her or maybe it's b/c she's the most entertaining person alive :)

We're Still Here :)

Sorry, guys -- I've been out of the loop again! We are still here and Brayden Boy is still livin' it up! I don't have much to update you on. . . we still don't have an appt with the Infectious Disease guy (who would think that it is this hard to get an appt!). We have an appt with the Geneticist on Thursday. I've been trying to read up (thanks for all the help Wendy), but now I'm only more confused. There are several "syndromes" connected to the 22q11 deletion, and quite frankly, they all sound the same to me. I'm guessing the actual diagnosis will be based on us answering about 1 million questions next week.

Bray-My has still be fighting with upper teeth. He had another one pop out this week (a fang) only to go back into hidding. . . That makes 2 disappearing teeth! The 2 on the bottom are still there, and they are really sharp :) He has been in a great mood the past couple of days, so he must be getting a break in the pain. Poor little guy, if these teeth don't come out soon, we're going to have to go in after them!

Here are some pics from recent weeks -- I'll add captions b/c Jordan really like them :)

Let me out of here! I didn't do anything, I swear. I want my one phone call -- Lillith will bail me out of here!

Hey, that tickles!!! Stop it or I'll squirt soy out my nose!

Whee -- this is fun!!

Look at my wind-blown locks! So handsome :)

This piece of paper is so funny! Who needs toys when a boy can play with paper?

Momma kept calling me "ghetto boy" today, but I don't know what she's talking about. These new pants fit just fine.

The Results are in --- FISH test & 2nd Opinion

Well, the day started out pretty crappy b/c right before we walked out the door for the pc appt we got a call from our regular pc. . . the FISH test came back positive. I was not surprised and was pretty well prepared for that, since Brayden Boy doesn't seem to get many breaks these days. One more thing to worry about, I guess. We'll be making an appt with a geneticist (sp?) to find out what to do next -- probably some more torturous testing for the poor little guy. For those of you who don't know what the FISH test is, go ahead and search for DiGeorge Syndrome or 22q11 deletion. . . I've got lots more research to do myself.

Now, on to the pc appt. We had a good and lengthy talk with the dr. We all agree that Brayden is doing amazingly well. At first, he said that we would need to wait until after the TB treatment was over -- obviously if he had active TB we wouldn't want to put him on by-pass and have the infection spread throughout his body. But once I explained that Brayden had a clear chest x-ray and that he had the BCG at 3-months, we came up with a new game plan. He was shocked to hear that Brayden had the BCG (guess it didn't sink in at the beginning when I told him that Brayden was born in Guatemala), and he said "that changes everything." So, we are going to an Infectious Disease specialist to make *double* sure that the TB is inactive. If the ID guy clears him, we are moving forward with surgery right away. At Brayden's age and size, there is no benefit to waiting. . . the mortality rate is the same for a 1 year old as it is for a 2 year old. He even said that some surgeons think it is higher for the 2 year old, since the heart is having to work harder to compensate for the ToF right now. FINALLY -- a dr backs-up my gut feeling about all of this. Also, on a good note, the dr said that Brayden's PAs are well developed and that he was confident that any surgeon could do this repair -- then he said, "I could even do it . . . maybe". I told him that we weren't going to accept any maybes, and that we would go where ever we needed to. He gave us the name of 3 surgeons that he advised we get consultations from -- one at UK, one at Cincinnati, and one at Columbus. My gut says we're not going to UK, but I'll talk to the guy anyway. Everyone tells me that we will know the right surgeon when we talk to them, so hopefully this will be an easy decision.

So now, we've got to get cleared by the ID guy, get consultations from a few surgeons, pick one, and schedule this surgery -- oh, yeah, the pediatrician recommends that we avoid RSV season if at all possible since Brayden is at high-risk. That means, we need to get the surgery in before November. . . I guess we will see. . .

Sweet Stuff

Since we first decorated the nursery, DH has complained about the big empty space above the closet doors in Brayden's room. Today, almost a year later, I came home to find this hanging in that spot --

DH found it, bought it, and hung it all on his own -- now that is sweet stuff!

Here is some more sweet stuff --

Brayden Mynor is such a smart boy, and he is so much fun to be around these days. It's like he learns new things everyday, and it is just amazing to witness. He now signs for milk, eat, more, and sleep. As of today, he also plays peek-a-boo, and that, my friends, may be the cutest thing ever! He throws his hands up on his face, sometimes they cover his eyes, sometimes not -- it's really funny :) I tried to get a pic, but he got distracted by the camera and stopped playing. I'll have to try again tomorrow.

We have an appt with another pediatric cardiologist on Friday -- please pray for us. Please pray that we get some understanding of what we are supposed to be doing. Pray that God will give us guidance and peace. I just want to do what is best for Brayden, so I need know what that is!!! I'm hoping to get some idea on Friday . . .

Special Day

I know I am the Queen of everyday meaning something, but today really is a special day -- one year ago, we received our referral!!! I called Michael (after he didn't answer the phone the first 2 times) and said --through tears and weeping as I stared at my computer screen -- "He is the most beautiful thing I have ever seen." His response -- "Did you say "HE"????" Yep, one year ago today was the day that changed our lives forever, the day we found out that Brayden Boy was a boy, the day that we found out that we were really getting a kiddo, the day that Jordan said, "Darn it! I wanted a girl!" (she feels much differently now though!), the day that was happiness. . . Today is a really special day ;)