exhausting week

Gabe has had a good week with physical milestones and a bad week with feeding. The good news is Gabe is sitting independently and holding and playing with toys. Now for the bad news. We went to GI clinic last week. Gabe's weight had dropped from the 60th to 40th percentile and I thought GI should really be involved at this point with his feeds instead of the Gtube surgeon and cardiac dietitian. So we get there and come to find out Gabe is getting way too little calories and fluid and we need to add a fifth feed daily. I understand this and I really don't want his weight to drop anymore...problem is, Gabe does not like a fifth feed. His reflux came back, he was extremely fussy after his feed, and very sweaty. It was hard to make it thru last weekend with such an uncomfortable baby. I felt like I was stuffing him to the max. The amount he was taking by mouth had drastically gone down. It's so hard when you work so much on feeding, to feel like all your hard work is lost. I called the GI nurse on Tuesday to see if we could try anything else to help with feeding. She suggested extending the 10pm feed over most of the night. So, we are feeding him at 6am, 10am, 2pm, 6pm, and then a slow feed from 10pm-4am. He woke up alot at night this week...I guess b/c we disrupted his schedule some. I'm not really sure how the longer feed is making him less full during the day, but he is doing much better. Maybe his stomach just needed to stretch a little and get use to it. He has actually eaten a little better the past couple days. His technique is very good as he is finally figuring out that his lips can move seperate from his jaw. He is still a little fussy after his feed and he still gets a little sweaty. I'm going to keep with this schedule till Wed and see if he keeps making progress. I just keep trying to think of ways to make him continue to be motivated to take babyfood while incorporating that extra feed.
We have a Cardiology visit on Wed. This will be our 6 month post surgery follow up. I'm a little nervous. They say he is repaired and should be just fine, but the sweating with feeds and the fact that docs say his liver is on the larger side of normal makes me nervous. Sometimes being a nurse makes you worry way too much...or maybe it's just in my nature.
I'll post pictures later.

One year ago

Sorry it has been so long. We've been super busy with weddings, baby showers, wedding showers, and outside fun. Gabe has been doing well. He was Baptized last Sunday. He was actually Baptized in August in the hospital, but last week was the official stuff. We've been doing lots of therapy. Gabe's pecs are incredibly weak, so we are really working on him moving objects to midline and activating his upper body. You really need your pecs to get into any type of crawling position. Poor Gabe just hates being on his belly and using those chest muscles. Hopefully he'll realize that using these muscles will help him. We have also gone to the Down Syndrome clinic at Cincinnati Children's Hosp. to get some extra therapy from the speech therapist on feeding. Gabe did great with a vibrating spoon. Who new that spoon would make such a difference. He still doesn't like the cup, but he's averaging a good 4-5 Tbsp a day with the spoon now. One step closer....

One year ago today, I found out I was going to have a child with Down Syndrome. After all the tears and struggles, look at the cute little guy I've been blessed with. He makes me smile everyday.

Busy Weekend

Swim class

Playing outside

Happy Easter!

The many emotions of Gabe

Some say that people with Down Syndrome are "happy all the time". Gabe is a happy baby, but he shows me a wide range of emotions everyday just like any child would. Here are some faces from Tuesday.

sitting like a big boy

Gabe has been working on sitting up lately. He's been really doing well. He no longer likes tummy time and immediately roles over onto his back...little stinker. Feeds are going a little better. I have an appointment scheduled with GI to see if we can do anything else for the reflux besides Prevacid. We'll also be seeing the Speech Pathologist in the Down Syndrome clinic more frequently for the feeding stuff. We saw ENT last week and they will be sedating Gabe in May to look deeper into his ears. They'll put in tubes at that time if they see fluid which they are expecting.

Justin turned 30 on Monday. Gabe got him some UK gear..go cats!

How can you not love that smile!

Cute pictures of the week

This week, Gabe went to swim class. He was happy to be in the water because he's soooo big

I know this looks upside down, but I was at Gabe's head when I snapped the shot. This is him benchpressing a wooden spoon. Good PT work Gabe!

Gabe was being very giggly and cute after bathtime I couldn't resist. I think he just liked being naked.

He also blows rasberries now. Gotta be careful or you'll get a spray of babyfood your way.

I haven't posted in a long time. Our computer crashed, so I'm typing this from a really old and slow laptop. Gabe has had a low grade fever on and off for the past day. He's fine with some Tylenol and there are no other symptoms. He had his repeat flu and H1N1 shots this past week and I think he's just having a little reaction to them. He hasn't wanted to eat much today, but I'm giving the little guy a break since he's not feeling well...good thing we have the Gtube as a safety net...now I sound like our OT.

7mo, 3 wks, Gabe's first word.

On Friday, Gabe said "dada". He's babbling like crazy now. And, just tonight, he signed "up" when Justin went to pick him up. We did it 3 times and he kept lifting his arms up. It's very cute...now if we could just get this feeding thing down.