Gate Pics

Lil' Chris loves his gates! He likes to throw his toys over them. He especially loves to crawl thru the white gate when we leave it open. He likes to play with the door too. He just swings it back and forth...it's a toy to him:)

M

First Beach Trip

We had sooooooo much fun on vacation! We went to the beach for the first time with Lil' Chris!

He loved the water. He and Pop had lots of fun jumping the waves:) Thanks Pop for coming and spending the day with us, we had a BLAST!

He also loved playing in the sand and making sand castles with Daddy and getting his feet buried:)

We put lots of sunblock on him and made him drink plenty of water. We can't wait to go back next year with both kids:)
M

Make a Smilebox scrapbook

Speech Therapy and the rest of the clinic visit

Ok, I finally have time to talk about the speech therapy class we had at the clinic on August 6th. Actually, it was more like food therapy class. The only thing they did about speech, was ask us how many words he knows. We said 5-10 and he knows the word "more" in sign language.

Dadda
Mamma
Yea
Baby(and he points to my belly:)
EIEIO
Oh
Uh oh

The rest of the visit was all about eating. They had a highchair for him to sit in, and then she brought in a tray full of different things for him to try to see if he would eat them. I guess they did this b/c he can't take the Pediasure and we can't keep him on formula forever. Plus, he can't keep eating baby food forever either, even though he only has 4 teeth still(those other ones just won't come in).

So they tried crackers, pudding, cereal bar, mashed mac and cheese, and I forget what else. He did well with all of them. We've tried things like this before too at home, and he does well at first, but then he starts gagging on it or just pushes it away and won't open up for it. They didn't do it long enough to see any of that, so it was pretty much a waste, but we keep trying them at home. Hopefully he'll come around soon, b/c he is starting to not want his formula and usual baby food anymore. I guess he realizes now that there is better stuff out there than just nasty baby food;) If only we could get him to eat more of the real food. I just hope that this switching over doesn't cause his weight to go down. He has been doing soooooooo well. His height to weight ratio was 75% at this visit!! The doctor was so impressed! I hope we can keep it up with all these changes.

We got the results back of the sweat test. It was inconclusive. He didn't sweat enough like they had thought, so now they want him to do another sweat test on our next visit. BTW, the doctor said that their clinic likes to have 2 confirmations for the diagnosis of CF, and since he was only diagnosed by the newborn state screening, they wanted us to do the sweat test and blood work there to confirm the diagnosis. Actually, he said they always retest the blood work in their clinic, b/c the state(the newborn screening, which is what diagnosed Lil' Chris) sometimes makes mistakes(I'll talk more about when he first got diagnosed when I pick up where I left off on "The Story". Check it out in the labels on the right side of the page if you want to get caught up on "The Story", just start reading from the bottom up;). He didn't want to get our hopes up, but I guess you can't help but wish that it could be true, that he might not have CF. Although, deep down I knew he had it. We've seen all the signs. So, a couple of days ago, we got the result back and it was positive for CF just like we all knew it would be. But that's ok, it is what we are all used to.

The test confirmed that he has 2 mutations of delta F508 which is the second stage(If you have 2 mutations, that means you have CF). I'm not sure how many stages there are, but all I know is that Stage 1 and Stage 2 are the worst, esp. if you have 2 mutations of them. If you have one mutation in Stage 1 or 2 and another mutation in a higher stage, it is not as bad. I have read that those who have 2 mutations in Stage 1 or 2 have CF more severely and have a harder time, and their life expectancy isn't as long(another reason why we are so protective of him now while we still can be). The average life expectancy is 37. But if you ask me, Lil' Chris is doing GREAT and is going to live to 100!!

M

PS. He was 24.2 lbs and 30 inches long. I forget the percentiles, but they were good:) Our next clinic visit and sweat test isn't until Nov 5th, unless his cough doesn't go away.

Cough and Throat Culture Update

Lil' Chris' throat culture came back "normal". YEA! Only problem is...he finished his antibiotic on Sunday, but he still has a cough. It seemed to go away after being on the Augmentin for the first week, but then the cough came back in the last week of being on it. The same thing happened the last time he was on Augmentin. So, from now on, he won't get Augmentin b/c he has apparently built up an immunity to it. Now he will get the next strongest antibiotic...Ceftin(he was on it once before but didn't like it). If his cough doesn't go away be Monday or if it gets worse sooner, then we will have to take him for another throat culture and most likely he will be put on Ceftin.
M

We're back from Vacation!

Sorry it's been so long. We were on vacation. I was planning on catching up today, but I'm not feeling very well today. I'll catch up soon, I promise;)
M

Sweat Test and Bloodwork

Yesterdays clinic visits went really well. Lil' Chris was such a trooper through everything(except getting his blood work done;)

I had an OB appointment at 9:30am and it was running a little behind, so I called and pushed back the sweat test at the clinic from 11:00am to 1:00pm. Why they didn't schedule us that in the first place so we wouldn't have to wait around there all day, I don't know. BTW, the OB appt went great. We heard the heart beating nice and strong. Our next appt is in 4 weeks for an ultrasound to find out if it's a boy or girl!!! YEA!!! We can't wait!!

Ok, back to the sweat test. We got there early and they were still out to lunch and the door was locked. So we had to wait out in the hallway where you don't know who has CF and is walking by coughing on your kid. So, we went and stood over in a corner by the bathrooms where we could still see the door and not have too many people walking past us. There was another lil' boy a little older than Lil' Chris waiting outside the door with his mom and some other lady. I just had a feeling that he had CF too, so that's another reason why we stayed away.

So when they finally got back from lunch, the other family went in, and then I followed. I told Chris to stay out there in the hallway with Lil' Chris, b/c I had a feeling that he shouldn't be around that lil' boy. As I was registering, I overheard them talking about the lil' boy and how he had CF too. So then I felt relieved that we stayed away, b/c you just never know if they could pass any bacteria to each other, esp since Lil' Chris has a cough right now.

So when they called for Lil' Chris, I went and got them out of the hallway(by the way, we do this same thing at the pediatricians too so he's not around any sick kids:) The sweat test was very weird. It was not what we were expecting at all. They put these 2 lil' things on his arm for 5 minutes, which stimulate the sweat glands. Then they put something else on there for 20 minutes. This thing was another small circle thing that collected the sweat. They did the same thing with the other arm too. We did get a couple of pictures, but only when his arm was bandaged up with the sweat collector underneath the bandage. When they took it off, it left a lil' blue stain on his arm(see pic above). He did such a good job. He didn't cry or try to pull on the cords or the things on his arms at all. They were all impressed as to how good he was the whole time. They gave him some toys and books to play with, which we totally skeeved. But we bit our tongue and just washed his hands afterward. He loved the Kermit the Frog they had that sang.

When he got done, they said that they don't think that he sweat enough. So we'll have to wait and see what the results will be. After that, it was 2:00pm and time for our speech class, but they still had to do his blood work. So I called and said we would be late. The first attempt didn't go so well. Nothing came out, meanwhile Lil' Chris was screaming his head off and of course sweating like a pig. They should've done the blood work first, then the sweat test. It definitely would've worked then, but oh well they didn't know. The second attempt was successful thank God. Once they finished, they gave him a lil' teddy bear and we rushed over to where the speech class was...
M

Walking Along the Wall

Here is a video I forgot to post a little bit ago. This was right before he started taking his first steps. It was the only way he got around without crawling.


M

Update

Lil' Chris' cough is so much better already and it hasn't even been a full week yet that he has been on the antibiotic Augmentin! Thank God for that! He is starting to like the taste of it too;)

He is also starting to take lil' steps on his own without us coaxing him! He gets one or two in before he falls on his butt. Good thing those diapers are padded;)

This Wednesday is our doctor's appointment to get the sweat test done, blood work done, see the speech therapist(not sure why???), and for a regular check up with the CF team. Hopefully all goes well. It sure is going to be a loooooooooooong day for all of us! The appointments are kinda spread out, b/c it was the only openings they had. The sweat test and blood work is at 11am and the speech therapist appointment isn't until 3pm, and then whenever that gets done, then we go and see the CF team. Wish us all luck!
M