Friday, October 30, 2009

Angel Andrew

Again I hate making these posts. They say that the survival rate of CDH is 50/50!! I some how find that hard to believe by the amounts of Cherubs earning their Angel wings. Please keep Andrew's family in your thoughts and prayers.

Thursday, October 29, 2009

WOW!! He's gained weight

After Kenny's week of power puking and being 8lbs 3 oz for a week, he ended up gaining 10 oz over the last week!!! It's really amazing how quickly the reflux med's have helped him. He's getting his neck strength going on now, and starting to smile at us!

Courtney, well poor little girl is getting two eye teeth in! She actually looked at Daddy today pointed to her gums and said "owie". So cute! So sad at the same time. I have to say, after having two speech/ and developmentally delayed kids first, watching a child develop 'normally' has been quite neat! The language that she has at 20 mths old already just blows my mind! It's great though, because she's a great model for Kristen and I think that Kristen is learning from her!

Tuesday, October 27, 2009

Finally settled out

Finally Kenny's reflux has mellowed out. My fears of the unknown reasons are also going to be put to rest with his scheduled head ultrasound on Fri. Too bad it took so long to get a damn appointment. I'm pretty sure that it's not due to the pressures of the brain, but what if it was! How can they let it go so long with such a worrysome issue??!! It's really rediculas. But his med's are helping, and he's now able to get some more tummy time and is lifting himself up onto his forearms! I'm so impressed!! He even did some cooing at his toys yesterday!

Kristen has been doing some amazing things with her communication as well!!! I'm so proud of her when she does. It's becoming so much more conventional types of talking/signing that it's just so cute!

Courtney, well she's gonna make me gray I tell ya!!! can tell from the picture of her in Kenny's crib with him sleeping in it!! Crazy kid.

Joe has been doing a lot more Autistic like behaviours lately. It's kinda our fault though. He does seem to benifit from the Gluten free/ Casin free diet. I feel sorry for the kid. It's almost like watching someone with terrets syndrome (sorry for the spelling), and he can't help but do the behaviors. So now we just have to wait for the Gluten to leave his body, and my calm happy Joe will come back!

Friday, October 23, 2009

It seems it's getting better

Thank goodness. It seems like the med's are finally helping the poor little fella. He's not screaming through his feeds anymore, and eating more again. Thank god we had Kristen and I now have the knowledge in what to do to help so that we could avoid feeding issues.

It also seems that Kenny's eyes are more focused and he's starting to track now. We still have to go to the eye dr to get confirmed how much he is seeing and what that's going to look like.

Everything around here is looking up, and is A-O-K!!!

Thursday, October 22, 2009

The upper GI showed nothing so far

So the Upper GI study showed nothing so far. So I stalked out the ped because I knew that he was on call at the And he told me just to go to his office, it's across the street from the hospital, and we got the prescription for Omeprazole. So here we go with another waiting game of seeing if this works. We're still waiting for the head U/S too.

Wednesday, October 21, 2009

Upper GI study

Tomorrow is Kenny's upper GI study. I'm hoping that we can get some answers. The puking is just so terrible to watch. And I worry about growth and development as well. I can't deal with another kid with feeding issues. It's been so draining working through Kristen up until this point....and she still doesn't chew. Explain that one to people. They just don't get what it means or how a kid can't chew. Well it's not that she can't, it's that she doesn't really get on how too. Oh well. Again, I'm hoping to get some answers tomorrow, but who know's if they will tell me anything at all!

Monday, October 19, 2009

Dr's appointment.

I took Kenny to the Pediatrition today. My gut feeling about the power puking and eyes made me feel that I needed to do that. I wasn't satisfied with what the dr's had said on Sat in the ER. So the dr is sending him for a head ultrasound, just to put that to rest for me. It's a possibility, but who really knows until we look. He's also sending him for an upper GI study. My feeling is that this may be the culprit. If there is something tight or loose with his tummy then it needs to be fixed with surgery. If it is none of the above, then we need stronger reflux meds. It's just so awful to watch a child reflux. It brings back the awful memories of going through this with Kristen. And of course all of the emotions of that time come rushing back. I just want one day for me not to be able to think about my kids in a 'clinical' or 'theraputic' way. I'd love to just be MOM! I know that that's not my path though. I know this in my head, but in my heart it hurts. I know in my head that everything happens for a reason, but again, not in my heart. I stay strong for my kids, because if I don't who will. Well I know someone will, but it's not their mommy!

Saturday, October 17, 2009

Not too sure what to think

I took Kenny to the ER today. He's been having his eyes going downward, looking like a sunset at times. And after talking to a friend whose daughter has hydrocepholous and the symptoms, I decided to take him in. He's been acting strange these past couple of days. Puking more, (even though he's on reflux meds), crabby when he's up, waking up crying like someone has just pinched him, and just not himself. The dr in the ER said that he looks fine, and we upped his reflux meds. I somehow am not convinced. I guess I'm just too worried now. I'm not that kind of parent to be paranoid though. So when I do worry, I know that most would have had their kid in ten times faster than me....well that's not really true, but you get the idea. I don't run to the dr with every runny nose. I go when the kids need to, or my 'mother's' instinct tells me, OK GO!!! I'll try to sleep these next two nites, and hopefully things will be better tomorrow.

Monday, October 12, 2009

So far so good!

Courtney is absolutly enthralled with her new little brother. All she talks about it 'baby' 'baby' 'baby'!! Here's a couple of pic's of the two of them. She even likes to share tummy time with

Friday, October 9, 2009

Things ain't goin too badly!

It's been two nites having Kenny home now. It's been wonderful. I'm not crabby from being up with the newborn yet...ask me in a few He seems to want to be up at nite, but not in a bad way. He feeds and then just wants to check everything So it's not like he's up every hour or anything like that. The adjustment for the rest of the kids is going well. Kristen has gotten over herself and smiles at him now. We are so blessed to have such beautiful wonderful children. I can't wait until Kenny is older toddling around with the others!!

Tuesday, October 6, 2009

We are home now!!

He's home, he's home, he's home!! Kenny came home today! After 47 days we are now complete! The welcome home for him went well. Joe is so excited and watches him every second! Kristen, well not so much! She is so upset that someone else is on my lap now!!! Oh well, she'll get used to it soon enough!

Sunday, October 4, 2009

We're getting close...I think

It's been 55 hours since Kenny has had a brady. I'm wondering if I'm going to get to bring him home tomorrow, or if the Dr will wait until Tues. I'm afraid to ask!!! I don't want to jinx things. I must say that things are soooo ready for him here that it's rediculas. He's one week away from his due date today. It's just been such a roller coaster this last week and a half. Not the coaster ride that I had expected to ride, but a ride none the less. I wake up everyday just thinking positive.

Friday, October 2, 2009

Another Baby Earned his wings

It makes me sad to have to say another baby has earned his angel wings. CDH is such an awful birth defect! I know how blessed that I am that all of my children are here and with me....difficulties, challenges, and all. I don't ever take for granted how lucky I am. Please keep baby Vincent in your prayers!

He's due in 9 days

Kenny is due in 9 days and he's still in the hospital. They did the EEG yesterday and we're still awaiting the results. I'm going to meet with the dr tonite when I go into visit to see what the plan is. I don't want to take him home if he's not ready, but I need to know what's going on. He went 2.5 days without a Brady, and then yesterday just after I laid him down to sleep, Yep, you guessed it he had one! I just feel like there are so many unanswered questions. And I just feel like I'm at my wits end sometimes. I'm positive and ready to move forth in his therapy when he comes home. The initial blow has now seemed to have passed, and I just want to be done with the NICU, and start our lives together as a big family. Kenny just turned 6 weeks old yesterday, and I had no idea that this is the way the rollercoaster was going to ride.

I feel like when I'm in a group of people with kids, that I'm now the mom that's like..."oh ya my kid has that" "yep feeding issues, been there too" "developmental delay's, ya that too"!! It's a bit of a joke, like I'm trying to make things up for my kids to have and the actual fact is that they DO have it!!! There are at times som many things running through my head that while I'm just having a normal conversation with people, the thoughts are louder than the conversation. I hope that they will get quieter, and things will settle out, and that I can create a sense of normalcy in our house.