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



Curious George cake

ball pit

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

Thursday, July 8, 2010



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


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

Tuesday, July 6, 2010

4th of July

swimming with Daddy

visiting Great Grandpa

taking a nap with mommy

sleep study

that glue was cold

look at my teeth!

playing with friends

So much has been going on. I think we have the feedings down now. They are over an hour and he tolerates them very well overall. Gabe had a sleep study friday to see how his apnea is and if he still needs to wear oxygen at night. He didn't like getting hooked up to all the wires b/c he was so tired. He slept 8 hours while hooked up to everything, so I was very happy. I on the other hand only slept about 4. We'll get the results in about 3 weeks. The lowest I saw his oxygen level drop was 96% and that was just a split second. He mainly hung out arout 98-99%. Getting off oxygen would be huge. Everyone say a prayer. Other than that, we've had a great weekend. We had a playgroup over our house on Saturday. This is something we really want to continue to do since Gabe is not exposed to other kids on a daily basis. He loved playing in the ball pit and splashing in the pool with his friends. On Sunday we visited lots of family and had a cookout as we celebrated the 4th. Gabe even got to go swimming with Daddy in the big pool and show off the skills he learned in swim class. Gabe did really well with his OT today. He is holding a crawling position really well and is getting much stronger. I think the best part of the weekend was that Gabe signed "mama" four times. Three people have witnessed it. It is the cutest thing. He is also doing "more" and "up". We had one year pictures taken of Gabe yesterday. Hopefully I'll get the proofs soon.