Thursday, January 15, 2009

Mommas little angel

Alex has not had a fever since Monday, he was very congested Monday, Tuesday, but today not much at all. He is back to throwing up about one feed a day. It is so frustrating to sit there and tube feed for an hour 10 minutes, and it all to come right back out when you feel relieved that you are done. This is the absolute worst part of this syndrome thing for me, the feeding/digestive issues. His feedings take 70 minutes, three times a day of my life, and then when it all comes out onto the floor, well, I might pull my hair out very, very soon. The good thing is that Alex is on the mend, he is sleeping without Motrin, or Benadryl. He is also happy to play on the floor again without his fingers in my mouth.

I have some new information on some new motor skills, but that comes with pictures and Im too tired to sit here and upload them, so you must wait.


TCM said...

shoot, your too tired! its only 1:45 call me Im awake! I love that we met cauz I can hear your voice as I read your posts now :O)... yes, for heaven sakes it IS a good thing! Cant sleep so Im leaving comments and catching up! You are so good at posting each day! My hats off to you once again! Oh now I see his thumbs! Never noticed... he's always looked perfect to me! Miss you and Love you!

Kelly said...

Love the second picture. . . his rockstar look fits his little rockstar t-shirt. Feeding issues suck! Kelly F

Cathy said...

I am glad the fevers gone and the cong. is better. Wish this throwing up thing would go away. I will look forward to see the post about some new motor skills.

Hailey said...

Alex's shirt is too cute! I can't wait to see the new pictures.

Rebecca Jo said...

It's got to be frustrating... you just want that angel to hold that food down & let it nourish him.... you are an incredible mom though - giving all your time & strength & energy! Hang in there!!

Imse said...

He`s really a little angel! So cute!

Kids with RTS throw up now and then and in periods really often the first 2-4years. My Hannah does throw up 2-5 times a day now. Really frustrating when I use 2 hour x 4 to feed her... If I`m lucky I can catch it in a clean cup and give it in the button again (it sounds nasty for people who aint used to it;) ).

Marissa said...

Glad to hear Alex is on the mend. I'm with you on the feeding issues. Marissa throws up quite a bit because the trach and her secretions make her cough hard. Then she gags and throws up. We have periods where she does not throw up at all and then it will return. Her GI and Pulm want her to have a Nissen Fundo but her Ped is with me in that the vomiting should stop when she gets her trach out and she doesn't cough so hard on her secretions, so no Nissen.

I'm anxious to see the new pics and get the news, but I will wait as long as you need. :) I pray you find some peace and rest today.



The VW's said...

Alex, you are too cute!!! Glad to hear that you are starting to feel better!

Christy said...

Wow, I feel for you with the feeding thing. Emma has just started having digestion problems. We saw the neurologist today and he referred us to a GI. I hope they can give her something for the reflux she seems to be experiencing. Hang in there. Glad to hear he's playing better and not needing medicine for bedtime. Thanks for stopping by the blog and leaving your encouraging words.

Kristi said...

Noah had severe reflux when he was a infant so I know how scary and frustrating it is. Things will get better. Glad to hear Alex is feeling better, Hugs.

Myssie said...

His little shirt is soooo cute!! I love it!!

Pam said...

Hi there! Alex is soo stinking cute. I just came across your blog, don't ask me how, but I thought I would stop by and say hi.

I am Pam mom to Rhett who is 3 yrs old. Rhett has Down syndrome, and he was born with Pulmonary Hypertension, a tethered spinal cord, A PDA, Complete AV Canal, and Pulmonary Stenosis. He also has had a congenital diapghramatic hernia repair as well. Oh, and a Nissen and G-tube. Not to mention all of the hospital stays for various other reasons including Aspiration Pnemounia's.

SO I know what you are going through. It's rough to say the least.

I just thought I would stop by and tell you how much I enjoyed your blog and looking at Alex's pictures.


Pam and Rhett

Sara said...

The digestive part would be difficult I can imagine. Hang in sounds like Alex is on the mend. I do know how hard it is to still be in the thick of it.

Thank you for your encouraging words today.....and I totally agree with you. You and I are no stronger than anyone else. We just don't have a choice.

We love our kids no matter what though. I am sending a cyber hug. I hope you felt it.

Hugs, Sara

trista said...

Here's hoping Alex is feeling much better, and is fully recovered from the sickies! I HAVE to know where you got that great shirt?? I love it! I think the new babe is going to need one.