Buddy Walk

The Buddy Walk was this past weekend. The first hour was great and then as soon as we started walking, it rained. Oh well. Thanks to everyone for walking with Gabe. He had a great time...even if he was asleep by the end of it.

Last night I went out to dinner with the northern KY mom's group. It was so much fun. It's nice to talk to other mom's who have been through it or are going through it, especially when you feel like you're kinda in a rut. We laughed alot and it was a great night to be outside having drink and eat yummy food.

Buddy Walk Saturday

Gabe loves the laundry basket.

We have had a busy 2 weeks around here. Last week, Gabe started refluxing really bad. We had changed to a new formula the week before and he had been doing fine up to that point. He was heaving and b/c of his Nissen, he can't throw up. He started sounding really congested and his eyes were watering and he would cry in his sleep. I had even called the pediatrician to get Pedialyte instructions while I was waiting for the GI RN to call me back. After 3 days, it magically disappeared. I think it ended up just being a stomach bug. He's back to his old self and eating great. I've started pureeing what we eat for dinner and giving it to him. Gabe loves spaghetti and mac and cheese. Our speech therapist was watching him eat and determined that what looks like tongue thrusting is actually not. Gabe has control of the back half of his tongue and swallows well. The front half is just really weak. You can sometimes even see the tip shaking like muscles do when they are exhausted and have been worked out. We will continue to do exercises to make Gabe's tongue muscle and jaw stronger. That's the good thing...it's about strength and coordinating movements....we don't have to correct a wrong behavior as would have been the case if he was tongue thrusting. He's back up to about 16 Tbsp a day, but he is now taking pureed or stage 3 baby food. He's actually starting to look a little chunky. Hopefully when we go back to GI in Oct we can back off some of the tube feed.

Gabe has also been very clingy to mommy lately. Don't get me wrong, it's awesome being #1, but he screams for babysitters and won't let others hold him. He just looks around the room for mom and dad and starts sobbing and signing "mom". He just gets so worked up. Even when I come home, he won't let me leave the room b/c he thinks I'm going to leave again. I know it's a phase and the Pediatrician even said that it is a good sign for later in life that he won't be a kid who runs off in a crowd, not caring where mom and dad are....at least that's what I'm telling myself.

The Buddy Walk is Saturday...hopefully it doesn't rain.

long day

Gabe had outpatient surgery today. He had an orchidopexy (procedure to decend testicle and close hernia from ascended testicle) and they did a bronchoscopy to make sure his airway was still strong and growing well. Everything went great. He'll be in some pain for awhile and there is definitely some bruising, but he's been in a good mood overall. It was hare to hand him over. Even though it was a minor outpatient procedure, Gabe has been having major stranger danger and cries whenever mom or dad passes him off to someone else. Plus, I just hate that surgical waiting room. The lady that announces names when the doctor is ready to talk to you is very sweet, but her voice just brings back heart surgery memories and my stomach twists into a big knot. Other than that, Gabe is still doing well. Feeding is about the same. As far as motor skills, Gabe loves standing. We're working on going from seated to standing. He still hates being on his stomach and crawling. As far as speech goes, we've finally started getting some "b" sounds. We had a fundraiser for Gabe's Buddy Walk team on Monday night at Hofbrauhaus. Thanks to everyone who stopped by. It was nice to see so many friends and family. 15 more days till the Buddy Walk!

Don't you just want to eat him up?

The Buddy Walk is less than 1 month away. Sign up now to walk and/or donate to Gabriel's Angels. If you are busy on 9/11, join us at Hofbrauhaus on 8/23 for Gabe's fundraiser. We have a long way to go to match last year's total. Tell your friends!

www.syssolutions.com/fr/DSAGC/2010Buddywalk/Gabrielsangels

horses, horses, horses

Gabe is doing well. We've been really busy lately with all the comings and goings of summer. I started making baby food for Gabe. I'm adding olive oil and butter to foods to help bulk Gabe up. He likes the stronger flavor. He definitely likes the fruits. The vegies are hit or miss. He spits the chicken at me, but pureed chicken is pretty gross. He's getting use to the different texture and I feel like he's gained a ton of weight this past month. Thin liquids are still a slow process. We have a new speech therapist covering while our's is on maternity leave. She's really good and commented on how happy she was with Gabe's communication. We're not getting the sounds that require your lips to go together (m, p, b), but we are pretty much getting all others. The best thing is that Gabe has a conversation with you. He'll make noises back and forth and take turns with talking. He'll study the movement of your mouth and try to mimic it. He gets very proud of himself when you tell him what a big boy he is. We're working on standing and he gets better everyday. He is able to do it with very minimal support for a couple seconds. He's still not a fan of crawling. Today was the Down Syndrome Association of Greater Cincinnati's family picnic. Gabe loved the swing. They even had pony rides.

The results are in

We had a Pulmonary appointment today to review Gabe's sleep study results from the test he had 3 weeks ago. The news was pretty good overall. They did half the study with oxygen and half without oxygen and then compared the two. Gabe's oxygen saturation on 1/4L of oxygen was an average of 98% throughout the night. Off oxygen, it was an average of 96.8%, which is acceptable for the airway of a child with Down Syndrome. He had a total of 5 obstructive apnea episodes the entire night. This is much improved from last fall when it was 18 times per hour. The 5 obstructions were very brief, but one of them did dip down to 89% which is pretty low. Gabe also has central apnea that they are watching. Central apnea is when you "forget" to breath while you are sleeping, thus pausing, like you're holding your breath. Gabe was waking up out of REM every 2 minutes in January due to his central apnea. This recent sleep study showed a huge improvement with central apnea. Gabe was in active REM sleep 95% of the night. He never held his breath longer than 5 seconds. This is great news. So overall, a very good report. Because of the one obstructive apnea event of 89%, the Pulmonologist did suggest keeping him on just a quarter liter of O2 as he tolerates it. He said don't stress over it...don't worry about naps, don't worry about car rides, don't worry if he pulls it off during the night. Keep it on as he tolerates. With Gabe having more energy lately and us really working on him meeting some important milestones over the next couple months, we really want him to reach his full potential. We want to give him every chance to do this, so we're playing it safe and trying to get him to wear the cannula for 3-4 more months. In November, we'll go back to Pulmonary and if he is looking good, feeding is continuing to go well, and his tone in his chest and airway is continuing to improve, he'll take him completely off oxygen. All and all, a very good report. Gabe clapped as the doc was telling us the news...I gues he approves of the plan too.

Busy Day

We had a busy day today. We went for Gabe's year checkup at the Pediatrician's. He got 2 shots and is now up to date on all his immunizations. They also drew blood for some screening labs (CBC, Thyroid, LFT's, Lead) to cross some things off our list of what to monitor babies with Down Syndrome for (ie: leukemia, thyroid disease, problematic enlarged liver, etc). Gabe cried, but calmed down well. He's been fussy at night the past week. He is 80-90th% for length and 50th% for weight on the Down Syndrome curve. I think he's getting more teeth too. Hopefully the Tylenol gets him through tonight.