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.

I'm too tired to come up with a title

What a busy week we've had. We went to GI on Friday and they confirmed that Gabe has dumping syndrome. Even though he still feels slightly clammy during feeds, they are happy with how he is doing and that the sweating has stopped when we give the feed over an hour. Hopefully he'll grow out of it one day. He also wants me to keep an eye on Gabe's constipation. I have to give him lots of water and juice thru his Gtube to make him poo everyday and if he doesn't I have to give him Milk of Magnesia...ick. He's been pretty backed up lately, so here's to hoping for a dirt diaper in the morning. The GI doc also commented on Gabe's liver being large. He said lots of kids with Down Syndrome have larger livers and Gabe's is pretty prominent and we will watch it. He didn't draw blood or act overly concerned, but of course I held on to it and am going to ask every doc who examines him what they think about the size. All and all, it was a good visit. His weight is back up to 50th % on the DS growth curve. They want to give him 3 good months of continued growth and they we'll adjust formula and feeds if need be.

The weekend was full of fun. Justin's sister got married. Gabe loves weddings...lots of stimulation and plenty of people to hold him. It's been so hot lately. It's suppose to cool off some this weekend...hopefully it will stay cooler for Gabe's birthday next week...more to come on that.

Happy Father's Day

Hot town summer in the city

Gabe is doing okay. We are still thinking he has dumping syndrome. We've been feeding him over an hour when he eats well and adding more volume and feeding him over an hour and 15 minutes when he doesn't eat well. This has kept his blood sugars from going over 200 and he doesn't bottom out anymore. He is still eating well by mouth. We have a GI appointment in a week and a half and I'm going to ask them if we should change formula, add more to overnight feeds, do more frequent, smaller meals, etc. to help with the stomach dumping. This week included many more smiles than last week...from both Gabe and me. Other than the frequent blood sugar monitoring, we've been going to cookouts, birthday parties, and a wedding.

Gabe is too sweet

Literally. So Gabe has always been a little sweaty after feeds. We often thought this was due to gass, discomfort from reflux, overfeeding, etc. Feedings have gone much better every since we started overnight feeds. He's been eating much better by mouth. The problem comes about 10 minutes after his tube feed is complete. He starts sweating to the point that his hair gets wet. The GI RN suggested slowing his rate down from a 30 minute feed to a 35 minute feed, but he was still sweating. I was talking to a respite nurse about this and she said it sounded like dumping syndrome. Typically, food gets broken down in your stomach and slowly empties into your intestine where nutrients are absorbed. With dumping syndrome, it empties quickly from your stomach to your intestine, so you have a ton of nutrients to absorb all at once. This causes blood sugars to go a little higher. This makes your body release a ton of insulin all at once, then causing low blood sugars. This up and down often causes sweating. So, being the diabetes RN that I am, I just happen to check Gabe's blood sugar on my expired home meter during one of these sweaty spells and it was over 200. I checked myself and I was 80. I called the pediatrician and she wrote a script for a new meter and test strips to see if I noticed any trends. Gabe's blood sugar is normal before feeds, then after a feed when he sweats it goes into the 200's, then an hour later it's in the 50's - 70's. So, I called the Endo MD I work with to get some advice. 200 is definitely not a normal blood sugar and I was afraid of diabetes. Kids with Down Syndrome have a much higher incidence of developing Type 1 diabetes than the average population. I din't want to take him to the ED since he looked great other than having sweaty hair. She gave me some instruction and I was able to get him a clinic visit today. They think it may be dumping syndrome and want to go down that route first. Endo is going to talk to GI and they are suppose to let me know a new feeding schedule to try. He may require smaller, more frequent meals. We'll see what they suggest. They also may do a gastric emptying scan to officially diagnose this. If it turns out that it is not dumping syndrome, then we will go down the diabetes route. We will have to do some testing to examine Gabe's insulin producation. In the mean time, we're taking it day by day. I've been checking Gabe's blood sugar about 8 times a day to detect these trends. It may be awful to say, but I really hope this is dumping syndrome...diabetes would be really really awful. It's one of my biggest fears since it would mean the chance of Gabe being able to live independently one day would be in question.

a week of good news

Gabe's 6 month post open heart surgery visit went well. The Cardiologist thought he looked great. They were so happy to see him sitting up and smiling and looking so big. They hadn't seen him since October....he's a different kid now. His liver is at the level it previously was (about 2 cm lower than usual). This could be due to his pulmonary hypertension that developed pre surgery. They expect it to resolve over time, or at least not get worse and they didn't seem concerned at all. Just listening to his heart, they don't anticipate he is having any major mitral valve leak. He will get an ECHO in early November to check everything out. If the leak is still minimal to none, they will take him off his Captopril. It was a very good visit.

On Friday, Gabe was sedated and the ENT doctor took a look in his ears. They cleaned out lots of wax and fluid and put in tubes. After the tubes were placed and he was still sedated, the Audiologist did a check and he passed the hearing test. This was a major relief that it wasn't permanent hearing loss and he does not need hearing aids. The ENT doc then did a laryngoscopy/bronchoscopy to look at Gabe's airway. Since he had a difficult extubation back in Oct., he wanted to make sure everything looked good and get an idea of the size of his airway for future reference. When it was all done, they called us to PACU. Poor Gabe was waking up and just sobbing. I snuggled him and rocked him and he eventually calmed down and woke up from the sedation. We took it easy that afternoon and evening and the weekend has gone well. It may just be my imagination, but we have noticed that Gabe is making alot more noise since getting his tubes. He's saying lots of dada's and doing this yelling thing to get our attention. It's cute for about a minute and then you just want to start telling him to use his words...oh wait, he's a baby.

Feeding is improving. He's still doing lots of tongue thrusting, but he's tolerating the feed more. We started doing overnight feeds from 10pm - 6am to make everyone's life easier and then we feed him with babyfood and thru the tube 3 times a day. This new schedule has helped with the eating by mouth and he's back up to 5-8TBSP/day.

Happy Mother's Day!

I had a great one.