Sunday, August 8, 2010

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.





Tuesday, July 27, 2010

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.

Tuesday, July 20, 2010

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.



Sunday, July 11, 2010

Pictures from Gabe's Birthday

Aquarium

mmm...icing


Curious George cake

ball pit



So much birthday fun this weekend. We're all exhausted.








Thursday, July 8, 2010

pictures

http://vimeo.com/13186690

Happy Birthday Gabe!!!


Happy Birthday Gabe! My baby is one year old today. Oh how our lives changed a year ago. I remember being in labor and progressing fast. I remember your heart rate dropping and deciding to do a csection. I remember asking the anesthetist what the Apgar score was after that first cry. I remember shaking from being so cold in the recovery room. I remember Grandmas coming and in and telling me how good you looked. I remember seeing you in the special care nursery and thinking that you didn't look like a baby with Down Syndrome. However, I did notice the single palmer crease, the gap between your big toe and second toes, the extra skin on the neck and I knew it wasn't a mistake. I remember the neonatologist coming in the room to tell me they were taking you to Children's to watch your oxygen saturation. I remember Justin calling to tell me he was holding you and watching the Red's game...what he always wanted...and then I slept.

The last year has been full of ups and downs. When Gabe was so sick, I really wasn't sure he was going to make it. It's an awful thought to think about, but that's how close he was. Even Justin told me of a story he was told of in high school that he thought of frequently when Gabe was so sick. It's only 6 words. It's by Hemmingway, and the story is, "For Sale: baby shoes, never worn." In those 6 words, you get an entire story.

Instead of thinking of all the things Gabe can't do at 1 year old, lets think of all the things he can do. Gabe can:
sit independently
understand the signs for eat, drink, more, mom, dad, and up
sign mom, and up
say dada
hold a crawling position for 10 seconds.
roll over (if he really wants to, but he doesn't like to)
eat up to 19 Tbsp a day by mouth
play so big
clap his hands
say "d", "b", "s", "t", and all the vowels.
reach for you hair on command
very close to pushing up from a lying to seated position

Go Gabe Go! We love you so much. You make us smile everyday. You have come so far and we are happy to be along for the ride.

Baby shoes worn!

Wednesday, July 7, 2010

7-7-07

Happy anniversary to my wonderful husband. This pic is from about our 3rd date. Gabe and I are lucky to have you.