Gabe and Alyssa's Story

Preschool prep

2012-01-21T11:26:00.000-08:00

We met with Kenton County School Board this week to discuss Gabe's options for preschool and the transition from First Steps into the school system. In KY, you can start preschool when you turn 3 if you have special needs or are on a food program. We are very fortunate that the public preschool for our neighborhood has a good reputation. Gabe also has the option to stay at Redwood for preschool. We think we would like him to go to public preschool as it will prepare him a little better for kindergarden and be a different feel from just a daycare setting. He will be pushed and it will be good for him. He would attend at afterschool program at Redwood. The IEP process is overwhelming. Gabe riding the bus is overwhelming. The next step is for us to tour the school in March. The good news is they have a nurse there and a teacher and 2 aids in the classroom for 20 students. Hopefully Gabe won't have his gtube then. He is still preferring to take little sips initiated by us instead of big gulps initiated by him. Hopefully Gabe will be walking independently by then. He could walk...he just chooses not to right now. I think it's too much effort at this point and he is just stubborn. Anyway, alot can happen between now and August, so we'll see how it goes.

Alyssa is doing well. She is finally sleeping for longer stretches at night. She's consistently going to bed around 9:30pm, waking up to eat at 2:30am then going back to sleep till 6:30am. Sometimes it is difficult to get her to fall back asleep after the 2:30am feeding, but overall, this is a huge improvement. What was the trick you ask?....sleeping in the bouncer. We'll worry about that later. Gabe loves Alyssa. He is into everything she is doing and wants to "help". Today I was feeding her a bottle and he scooted over to me on his butt and gave me a burp cloth...such a smart boy.

I go back to work in a week. I'm having mixed feelings....

cold and flu season...yuck

2012-01-09T12:12:00.000-08:00

After a week of sickness, we are all feeling much better. Gabe and I had the respiratory bug and Alyssa had a slight fever and irritability (luckily no respiratory symptoms for her so far). After 2 trips to the doctor and 3 phone calls to the nurse, we are all much happier.

Poor Gabe was walking holding onto dad with just one hand and fell walking into school the other day. He needs to learn to put his hands down to catch himself...lets just say he's still learning. Justin felt bad, but his other hand couldn't get to him in time...now Gabe looks like rudolph again.

and so this is Christmas...

2011-12-28T08:35:00.000-08:00

Christmas was pretty awesome. The weekend before Christmas, we had the Lawrence get together which was nice. There are lots of kids now on that side so it was full of Christmas cuteness. Christmas Eve we went to Justin's Mom's house, then my parents. The food was great. Have I mentioned my kids are just a little bit spoiled? Gabe was pretty into the wrapping paper and being the center of attention. The kids got some clothes and toys. Gabe's Playschool basketball hoop is the favorite so far (also a good toy to coax him into doing some physical therapy without knowing he's doing it). The big gifts were a zoo and museum center pass. Thanks everyone!

Christmas Day was full of extended family. It was nice to introduce everyone to Alyssa. Her Christmas dress was pretty awesome. Alyssa is still waking up at night every 2-3 hours. She's starting to drink larger volumes from her bottle, so hopefully they will start to be spaced out more. She still breathes loud when she drinks her bottle, but is in no distress. Gabe continues to call her "fussy baby" all the time. She is having more wakefull periods and I've gotten a smile here and there. I go back to work in 4 weeks so we're trying to start a bedtime routine with her....we'll see how that works out.

Way behind

2011-12-21T07:45:00.001-08:00

So I am way behind on blogging...sorry, I have 2 kids now and I'm learning some things just aren't going to get done and sometimes we are going to be 10 minutes late and I have to let that go.

Alyssa has been much happier lately. About 2 weeks ago we had a really rough night with crying, back arching, and a very unhappy baby. Justin and I were both beyond exhausted the next day and I decided I couldn't wait till the doctor's appointment in 5 days...I had to change her formula now. She was on Neosure which is a 22cal formula for preterm babies. Regular formula is only 20cal so this is why there was some pressure to hold off switching formulas. Eliminating milk in my diet hadn't helped too much and since my last post I dried out and have stopped nursing. Apparently my body can lactate if I pump 7-8 times a day, but not if I pump 4-5, so that is done and has made things a little easier on me. Anyway, we changed to Similac sensitive for gas and fussiness and I think it has really helped. The lactose in the formula has broken down some and is easier to digest. She still gets gassy and has fussy periods, but she overall seems much better. Her weight at the doctor was up to 8.5lbs which is great. Alyssa is still a very noisy eater and makes a squeeking noise sometimes. The doctor said again that she thinks she has some tracheomalacia (sound familiar?...not nearly as severe as Gabe's was, but I still hate that word). Anyway, it means she has a little floppy tissue somewhere in her airway that gets irritated with feeding, but because it doesn't seem to bother her and she never appears in distress, it doesn't warrant an ENT referral and she'll grow out of it as she gets bigger. Works for me...either way, I feel like I need to warn others who may feed her that she likes to be noisy with her bottles. She is sleeping better and starting to learn the difference between day and night. She is having more wakeful, eyes opened periods during the day. She still wakes up around 11pm, 2am, 5am, and 7am to eat, but goes back to sleep pretty easy. She only drinks 2-2.5oz per feed typically. I think she wants to drink more, but her stomach is still small and she'll vomit if she takes more than 3oz in an hour. Hopefully she'll drop an overnight feed as she is able to take more volume during the day. We are able to tag team it so I am getting at least 6 hours a night which makes me functional.

Gabe is such a 2 year old lately. He thinks Alyssa's name is "fussy baby" and calls her that all the time. He is talking up a storm. He has pretty much mastered nouns and action words and we are starting to work on adjectives. Our speech therapist said he is the most verbal 2 year old with down syndrome she has ever worked with. Other families have asked us how we work on speech with him to get ideas. It is nice to hear that he is advanced in an area since we are working on catching him up in other areas (drinking from a cup and walking). As far as speech goes, Gabe has always loved books and flash cards with pictures on them. He loves making animal noises. We did sign language and he loves Signing Time videos. We also do lots of physical therapy activities in front of a mirror. Gabe is really into mimicking everything we say (the good and the bad). As far as motor skills go, Gabe took 3 independent steps about 2 weeks ago. This is huge. He is getting braver with his movements. The PT told us to really start letting him fall because he needs to learn to catch himself. This has resulted in a busted nose and black eye for Gabe the past 2 weeks. As far as eating goes, Gabe's weight is about the same (actually slightly less) since we dropped a feed last month. He is eating very well, so I was hoping it would be up. He only gets one tube feed a day and I was hoping we would be able to drop in and just focus on drinking from a cup before the New Year, but I don't think it's going to happen. Maybe the big holiday meals will help chunk him up a little bit. Drinking is about the same 8-10oz by mouth a day...needs to be about 25 oz per day. Gabe had an opthalmology appointment last week. His eyes are good. We go back in a year. We are trying to figure out how to discipline Gabe. We are starting "time-outs" on the stairs. I'm hesitant to do this with feeding issues (throwing/spitting out food) because we want it to be a positive thing and getting out of it would actually probably be more of a reward for him. When Gabe throws or spits out his food he is usually trying to get our attention. We sternly say "No Gabe, that's bad. You do not spit out your food." and proceed to put whatever he spit out back in his mouth. He says and signes "sorry mommy" and it melts you heart...only thing is, he'll do it again 2 minutes later. I don't think he knows that sorry means you don't do it again. He just knows it makes mommy happy. He's definitely a charmer and knows how to work his cuteness.

Have I mentioned I love Christmas? My decorations are kind of pitiful with just a wreath this year, but we still are enjoying the season. Gabe is really into trains so we took him to the Children's museum to see the trains and I think he really enjoyed it. He also met Santa...he didn't cry, but was kind of indifferent about him.

Justin and I got a night out at his law firms Christmas party 2 weeks ago. It was a nice time and was a treat to get a date night.

More Christmas photos to come!....

Week 4

2011-12-07T09:48:00.000-08:00

The days are just flying by. I need to finish my Christmas shopping. I'm thinking it's going to be a giftcard kind of Christmas. Alyssa is still the gassiest baby ever. Last night was pretty good though. She was uncomfortable during the day, but was much better at night (I think she worked some stuff out). We go to the pediatrician next week to talk about a formula change. I am continuing to pump 3-4 times a day. I've discovered that more than that is nearly impossible with 2 kids. Gabe is doing great stuff lately. He finally started cruising and is becoming more confident with his movements. For so long he was afraid of falling, but now he is quite the daredevil. Hopefully this is a precurser to walking. Gabe is also doing great with his communication. Talking has always been his strong point, but he has really taken off lately. We were singing "Old McDonald" the other day. Gabe fills in the blank as to what animal is on the farm. We went through cow, pig, horse. On the fourth round we sang, "Old McDonald had a fam, ee, i, ee, i, oh, and on that farm was a _____". Gabe paused for a minute and yelled "fussy baby". Talk about hilarious...Gabe already wants to ship Alyssa off to the farm.

week 3....getting into a routine

2011-11-30T05:20:00.000-08:00

Things are going well. Alyssa's due date was this past Monday. I couldn't imagine being pregnant that long. Nursing still isn't going well. We went back to Breastfeeding Medicine on Monday and Alyssa nursed the best she ever has (about 20 min), and she only got 20ml's from me. I talked to the doctor and we came up with a plan. I am going to stop nursing her. It's a struggle, she's not getting enough from me, and there is nothing bonding about it. I will continue to pump, but will decrease it to 4-5 times a day to make it work with Gabe's schedule. I learned I can't be hooked up to the pump, while feeding a baby, and chasing after Gabe. So, we will have to supplement, but at least she'll be getting something from me. Alyssa has also been very gassy. Not just typical baby gas...twisting, back arching, grunting most of the night. After consulting with the doctor, I am starting to try to make her more comfortable by eliminating dairy from my diet. Gabe had a milk protein sensitivity, so we are wondering if she is having a little bit too. After thinking about it some, I have been drinking a ton of milk. It's weird, but I've been craving it since having Alyssa. I've been drinking 2-3 glasses of milk between dinner and bedtime. Alyssa is the most uncomfortable in the middle of the night, so hopefully eliminating the dairy will fix it. Let me just say I love dairy, but I would definitely give up ice cream for a good night sleep. Alyssa has seemed much more comfortable the past 24 hours. She woke up at 12 am, 2am, 5am, and 7am to eat, but went right back to bed afterwards, so I am feeling pretty good today. I had a fever on Friday and Saturday. It was weird because I had no other symptom. I was a little worried about mastitis. Lactation couldn't find anything, but said I may have had some infection and inflammation that worked itself out. Who knows, but I'm glad I'm feeling better now.

Alyssa is getting big. I can tell her face is filling out and her belly sticks out some. She weighed 7lbs 5oz on Monday which is a great weight gain. She very strong. She has actually rolled over from front to back 6 times.

Gabe is doing well. If we distract him enough, he'll stand on his own for a little while. He also cruised some around the coffee table yesterday. Little stinker could totally stand and walk if he wanted to...he's just that stubborn and we have to trick him into doing things on his own so he doesn't realize he's doing it.

I stayed home with Alyssa for Thanksgiving (she's still pretty tiny to be around a ton of people). Justin took Gabe to his cousin's house. I thoroughly enjoyed my take-home plate. Bring on Christmas time!

Week 1...survival mode

2011-11-13T10:44:00.000-08:00

Week 1 Survival Mode has gone well overall. Poor Gabe got a cold the day we brought Alyssa home from the hospital. It's nothing extremely concerning, just a virus creating lots of drainage. 2 days later...Alyssa sounds congested. Lets just say we've been dealing with alot of saline and bulb syringe to clear out the sinuses on both kids. I didn't even think newborns could get sick this early, but I guess I was wrong. Alyssa is also making a little bit of a high pitched whistle sound when she takes a bottle. They think she may have a little bit of floppiness in her airway or it could be related to her congestion. Either way, the doctor is not too concerned as long as she does not appear in distress and thinks it will either go away with the cold, or she'll get over it when she gets alittle bigger. Either way, floppy airway are not words to throw around lightly considering Gabe's history. Alyssa's weight is 5lbs 15oz on Friday which is good. I still like the sounds of 6lbs a little more.

Alyssa is still a little bit of a lazy feeder related to her being pre-term. We went to lactation this week for some help. She did have a minor tongue tie (stage 2) that they clipped. It was so tiny and thin she didn't even really cry. That has helped some. She is able to nurse a little, but she falls asleep quickly. She takes a bottle fine because it is less work than nursing. She also doesn't open her mouth very wide, so it's not the most comfortable thing for me, but it has improved. The lacatation physician said to try to keep up with it and in 2-3 weeks, she'll be a different kid as she approaches her due date and has more wakefull periods. The process currently is try to nurse, offer her a bottle, burp her and hold her up right so she doesn't spit up and then pump. It's about an hour long process that we do every 2-3 hours. She only take 1-2 oz per feed because she's little and gaining strength still. It's alot of work, but like I said, I'm trying to stay with it for another 2 weeks and see if things improved. Otherwise, things have been great. She is an easy baby. I feel better emotionally this time around without the worry of heart surgery or health problems in our future. I feel like I am able to enjoy her more. Gabe is doing well. I am not able to try to lift him for another week, so that has been difficult. I am trying to make a point to give hime attention as well. We read books and work on puzzles and do some fine motor exercises. Justin has been great with Gabe's care from therapy, to bath time, to taking him and picking him up from school. Gabe has noticed Alyssa. He'll say baby and give kisses. He loves when we point our her eyes and nose and ears. He gets a little unsure when she screams for her bath, but otherwise, he kind of ignores her after awhile.

We're tired, but very happy and thankful.

Welcome Alyssa Rose!

2011-11-07T18:44:00.001-08:00

I went to work on Friday feeling fine. Throughout the morning I was having contractions here and there. They started to pick up around lunchtime. My water partially broke while I was using the restroom....I thought it would be more obvious so I was unsure if it was the real deal. I called my doctor, Justin, and our mom's and went to the hospital. By the time I got there, the contractions were every 3 minutes and were painful. I was having back labor and it was much harder this time than it was with Gabe. I wasn't dialated, but they checked me and my water did break. I went ahead and opted for the repeat csection since I had a section with Gabe. Why risk it...especially since I wasn't dialated at all was laboring pretty intensly. Everything moved pretty fast from there. Alyssa was born at 2:58pm on 11/4/11. She weighed 6lbs 2oz and is 19 1/4 inches long. She's a petite thing. She was 3 weeks and 3 days early, so she was considered preterm. I thought she would be coming early the whole pregnancy. Gabe was 3 weeks early and I just felt the cues coming on that she would be early. Luckily she is perfectly healthy. She had a great cry as soon as she was born and her color was really good. They monitored her for jaundice. Jaundice can happen when you are born early and can be more severe when the baby's blood type differs from the mother (I am O+ and Alyssa is Justin's blood type A+). Luckily her bilirubin levels were fine. Her weight didn't drop too much. Nursing is going a little slow. Sometimes she latches on great and other times she falls asleep or gets impatient and cries which is typical of preterm infants. They encouraged me to stay with it and give her a week or two and she'll catch up. It was nice to have the weekend at the hospital to recover. Justin was running around back and forth to take care of Gabe and finalize things at home for her early arrival. Gabe came to the hospital on Saturday to visit. He is very cute with her. He says baby and pats her when we tell him to be gentle. He'll give here a kiss and then he's off to play with something else. We came home today. It was nice to get settled in when Gabe was at school. This evening went well. I tried to give him some attention and he ate well and was talking well like everything was normal. He does have a little bit of a runny nose, so I'm hoping he doesn't get a cold. It would be really bad timing. I am doing well....a little tired of course, but in a good way. It was so nice this time around to be able to come home from the hospital as a family. While I know it will be difficult and sleep deprived I don't have the worry I did with Gabe. The first 2 weeks will be difficult since I can't lift Gabe after having my csection, but we'll make it. Luckily we have lots of help. I am happy, tired, but very happy.

If there's something strange in the neighborhood...who ya gonna call? Ghostbusters!

2011-10-31T18:36:00.000-07:00

It's the Great Pumpkin Charlie Brown!

2011-10-26T16:49:00.001-07:00

Picking out my pumpkin

The ducks at the petting zoo were my favorite

I fed the animals

Kinman Farm's Pumpkin Patch

some of Gabe's favorite things to play with

2011-10-20T18:23:00.000-07:00

Books
Blocks
Tupperware

Piano
Such a great rainy, lazy day today with my buddy.

Less than 6 weeks left!

2011-10-13T18:20:00.000-07:00

I'm very excited about pink and purple. Gabe's new room is below. It's plain, but we'll paint the walls and give it a theme once he is in a big boy bed.
My c-section (repeat section) is scheduled the day before Thanksgiving....if I make it that long. Everything is coming along nicely and I'm beginning to feel as if we are as ready as we can be. I would still like to go through some closets and get rid of some clutter, but the major nesting duties are taken care of.

Look Mom...I'm a fish!

2011-10-10T18:21:00.000-07:00

Gabe loves swim class! He splashes and kicks his feet. He floats on his back and glides through the water on his belly. He even likes to jump in and (briefly) put his head under. The only thing he won't do....blow bubbles.

October is Down Syndrome Awareness Month

2011-10-02T18:21:00.000-07:00

Many mothers of children with Down Syndrome who Blog, post everyday in October to help raise awareness regarding Trisomy 21 (aka Down Syndrome). I know it would be unrealistic with me being very pregnant and working 32 hours/week to post every single day, but I do promise to post more. This month I will post some info on Down Syndrome, Gabe's therapy, and all the things in life Gabe loves.
Gabe does have significant delays with his motor skills. He is very stubborn when it comes to movement. This is somewhat related to his hospitilization as an infant and lack of tummy time, his heart surgery, and most of all, his lower muscle tone. He has made great strides this summer though. We are currently focusing on getting his ab muscles stronger to help with the upright balancing that is required with standing and walking. Gabe is definitely a two year old and cannot know he is working, or else he will refuse to cooperate. Our physical therapist, Justin, and myself have the challenging task of strengthening Gabe's abs and getting him moving without realizing the effort he is putting forth. We have been able to do this in a couple of ways...check out the pics.

MVP

2011-09-22T13:17:00.000-07:00

Poor Gabe got the respiratory bug this weekend. He was breathing a little heavy and working a little hard, so we took him to the emergency room around 4am on Sunday. They admitted him to watch him for 24 hours. We have all recooperated and he is doing much better now. This is the first time in 2 years Gabe has been in the hospital. We saw many nurses who took care of him then and they were so excited to see how good he looked. Before Gabe got sick, he was the MVP at the UC football game. Check out the video attached. Gabe is also making stead progress with walking. He's such a toddler lately it's too cute.

http://www.youtube.com/watch?v=Vu2IVDLV74s

http://www.youtube.com/watch?v=4P2zfAZB2Zs

Buddy Walk 2011

2011-09-11T18:18:00.001-07:00

Saturday was the Down Syndrome Association of Greater Cincinnati's Buddy Walk. Our team, Gabriel's Angels, raised over $2,240! Many thanks to all of those who donated and walked with our team. It's difficult to put into words how wonderful it is to know that Gabe is surrounded by the love and acceptance of our family and friends. A few families and therapists have made the comment that occasionally those once close to you tend to distance themselves once you have a child with special needs because they either feel uncomfortable, don't know what to say, or feel like they can't relate. We are lucky this has not been a major issue for us. It's wonderful to see Gabe included with his friends and have everyone excited about this special day to celebrate that crazy extra chromosome. Gabe had a great day and kept saying 'buddy' all morning as we were getting ready. The weather was great and we had such a fun day.

splash splash!

2011-08-18T18:31:00.000-07:00

Gabe has been doing well lately. We were having some issues with getting him to eat about 2 weeks ago, but we now have a booster seat type highchair (Eurochair) that allows him to sit at the table with ua, and we are doing more of a side presentation of food and he is doing much better. I am waiting for GI to call me back to see if we can back off his tube feed again. We have to make this kid hungry to really want to eat and he is growing just fine, so I think we need to push him some. Gabe also had a sleep study 2 weeks ago. Any parent who has been through one of those knows it is not fun. Gabe had an average of 4 apnea episodes/hour. His oxygenation stayed pretty high however. For Down Syndrome, as long as you are less than 5 episodes per hour, they usually don't do any intervention. So, Gabe will get another sleep study in a year unless we have any concerns....works for me. Gabe got a new walker this week. This walker doesn't have a seat in it and requires lots of ab strength. It definitely is a workout for the little guy, but he enjoys walking and really gets it, it's just a matter of strengthening his abs and building up some endurance.
Gabe and I had a great day today. It was one of those days where I woke up in the morning and realized we had nothing planned (that rarely happens). We ate breakfast at First Watch and then went to the splash park and Woodland Mound. I had never been there before and it was awesome! The water was a little cold for Gabe at first, but once he got use to it, he loved it and was butt scooting all over the place! We will definitely have to go back sometime before Labor Day. We came home from the splash park and both took a nap. It was a great day.
We also had two year old pictures taken thanks to desiraejones.com.

I'm so excited about being a big brother!

2011-07-30T13:15:00.001-07:00

We found out Monday we are having a girl. The fetal echo and ultrasound all looked great...sigh of relief. Bring on the pink!

Fishes

2011-07-18T18:25:00.001-07:00

We took Gabe to the Newport Aquarium this weekend. He seemed to really like it. It's been so hot, it's nice to have indoor things to do. On Saturday night we also had a barbque/card party in Gabe's honor. We now have $300 in donations for Gabe's Buddy Walk. We have such great friends.

Happy 2nd Birthday Gabe!

2011-07-10T09:34:00.000-07:00

Gabe turned 2 on Friday. We had some family over on Wed and Fri for dinner and cake. Gabe also brought cupcakes to school on Friday and all the kids sang Happy Birthday. He's had a great week.

At two-years-old, Gabe can:

Eating: Yes, we still have the Gtube. Yes, we recently had to increase feeds b/c of some weight loss. Yes, Gabe still doesn't like to drink from a cup. However, Gabe is eating two year old food. He eats Gerber Graduate meals. He eats, regular oatmeal, spaghetti, cinnamon toast, grilled cheese, peanut butter crackers, hamburger, steamed veggies, rice, fish, etc. His jaw tires out from chewing, so we're working on volume, but I am happy we are getting away from soft foods only.

Walking: Gabe likes the Orthodics we got back in the spring. They help stabalize his ankle. He is able to pull up from sitting to standing. He is able to stand with the support of holding on with just one hand. Sometimes you can let go for about 3 seconds and he'll balance. He still does not want to crawl. He dives to the floor on his belly, stretches out, and then pushes up to sitting. He is able to move all over the house this way. Just today we put up some baby gates b/c he's getting so fast. He still walks in his walker. He also walks while we hold his hands. We have Physical Therapy 6x/month. We are really working on bending his knees to help with cruising and prevent the tin man walk.

Talking: Gabe knows about 25 signs now. He is also putting them together (ie: "Help with book please"). It's pretty amazing how much he understands and is able to communicate. He does all the motions to "Wheels on the Bus", "Twinkle Twinkle" and does some to "Itsy Bitsy Spider". Gabe has said "mom" and "dad" and "bye" for awhile, but it is much more purposeful now. Just this week he also started saying "book" k and all, blue, and he tries to say mirror, orange and yellow. Gabe also knows animal sounds for cow, sheep, duck, and he made up one for a scary monster.

Fine Motor: Gabe points at pictures in a book. We are working on him pointing in the air at an object. He is able to point to his hair, ears, mouth, nose, belly, fingers, feet, legs, and is hit or miss with eye. He is getting better with coloring. He'll hold a crayon now and tap it on a paper for awhile before he throws it. He also pokes at playdo.

Potty training: It's still a little early for any boy to really be potty trained, however, we are introducing it without any pressure. Gabe signs diaper when we ask him if he needs to be changed. We're working on him signing potty when he goes. We sit him on his little potty about once a day and he thinks it's fun. He's gone about 5 times on the potty the past month. I'm not pressing it b/c with the new baby coming in Nov., it probably isn't the best time to really push it.

I think that's it for updates. Gabe continues to amaze us everday. He's quite the toddler now...attitude and all. It's exciting to see him grow. Happy Birthday buddy!

Big Boy, Big School

2011-06-29T18:27:00.000-07:00

Gabe is doing well overall with school. He did get smart last week and has started to cry when we leave. He gets over it pretty quickly though. He is also eating slightly better. He is playing more and seems less shy with the other kids. They have circle time, arts and crafts, social studies, and gross motor. Today he developed a fever during the day. Poor guy isn't feeling well. At first I thought maybe it was his canines finally coming thru, but it got up to 100.5 which is high for him, so I think he has a bug of some sort. He refused lunch today so I'm thinking maybe his throat is soar. As long as he has Tylenol on board he is okay. Hopefully he gets over it soon. He is "talking" alot more. He is mimicking lots of sounds and is doing really well with his flashcards lately. I'll have a more detailed update next week on all the fun stuff Gabe is doing...he will be 2 next Friday!

Father's Day and School

2011-06-19T10:32:00.000-07:00

Gabe started school this week. He is attending Redwood's Early Childhood Development Program. For those who do not know, Redwood is a school here in NKY that provides a developmental enriched curriculum from newborn to preschool, to afterschool programs, to their adult center. The program integrates typical and special needs children into the same classroom. All of their teachers have degrees in early childhood education and they have many therapists who work there. We are so fortunate to have this available for Gabe. All of his therapists thought it was time for him to be around other kids to help motivate him to want to walk and drink from a cup. He is in a Mon, Wed, Fri program. Last week went well. He didn't really cry when we left. He had been napping well and all the teachers said he is doing well overall. Problem is, he won't eat for them. He did better Friday, but overall, not so hot. I'm unsure if it is b/c the teachers need to push him a little more, and not tolerate him spitting out food, or if all the other kids are just distracting him. I know there will be an adjustment period, so hopefully he picks things up this week.
In other news, Happy Father's Day to all you Dad's out there! My dad and Justin are wonderful fathers and Gabe and I are very lucky.

It's hot, hot, hot!

2011-06-07T18:03:00.000-07:00

I think we just skipped spring and went straight to summer. I feel like I am sweating all the time...maybe it's just pregnancy hormones. We are doing well. Lots of summer stuff going on....the zoo, the park, the baby pool. Gabe started finally pulling up to stand last week. You may have noticed him wearing orthotics in my last post. Gabe has delayed motor skill for a couple different reasons:
1. Kids with Down Syndrom tend to have poor tone and it requires alot of strength to flex those muscles to get them working. This is why Gabe can pretty much bend in half. Poor tone in his facial muscles is also part of the reason it is difficult to get him to drink. 2. Gabe has hip flexion and can extend the ligaments in his hip. This basically means his joints are wobbly and he can do the splits no problem. I think his calling may be to become a yoga instructor. 3. Gabe was really sick early on and was restrained on his back for the early part of his life while his heart healed. Not having tummy time sets you back some. Don't worry...he'll get there! It's just a slow process. His orthotics are really helping him have stability in his ankles. It's exciting to see the progress. We also learned another trick from out PT: take a cloth hair band (the thick kind) and figure 8 it around his legs and pull it up to this thighs. It really helps with the hip flexion. Hopefully the cruising will come next.
We have introduced Gabe to the potty. We don't have any huge expectation, but we put him on it about once a day and he's gone on it about 4 times...he gets very excited...it's a start.

Guess who is going to be a big brother?

2011-05-19T17:59:00.001-07:00

That's right! I'm about twelve and a half weeks along. My due date is Nov. 27. We are a little nervous, but very excited. I felt a little green the first 2 months, but have been feeling really good lately. It is harder this time around not being able to nap all the time. Our Developmental therapist was working with Gabe about a month ago and brought a baby doll to see how he would interact with it and if he would know to feed it or be gentle. Gabe definitely picked it up by it's foot and threw it. The therapist jokingly says, "I hope you weren't planning on expanding on your family soon". I told her I was pregnant and she says "oh it's okay...we'll work on it". It was a funny moment. Gabe now knows the sign for baby and he pats my belly when I tell him there is a baby in there. It is too cute. Here are some answers to questions people may be wondering....

1. What are your chances of having another baby with Down Syndrome?
The chances are around 1 in a 100 (the same as a 37 year old) for the mother of a child with Down Syndrome to have another child with Down Syndrome. I've heard different theories on why this is. One common theory is that most babies who have chromosome division issues are miscarried and often times, no one knows why. My body proved I can carry one to term and this ups my chances. Another theory is mechanical error is typically 1% on detection tests and they label the 1% to women who have already had babies with any chromosome division issues to give them the highest risk of possibility. No one really knows why. Read question #2 for my specific chances...

2. Are you having any testing done to find out?
Let me start out by saying I would not change a thing about Gabe for the world. I strongly believe I was meant to have him...Down Syndrome and all. Prenatal testing is a pretty controversial subject with lots of opionion. Many people in the Down Syndrome community do not support early detection because it often leads to increased termination...destroying a life definitely worth living and decreasing the Down Syndrome population. While I understand this fear, I feel it is up to us to educate and spread the word of awareness and acceptance of people who happen to have Down Syndrome, decreasing the fear of the unknown that often triggers the decision to terminate. Anyway, having said that, I was very happy I knew before Gabe was born that he had Down Syndrome. I felt like I could grieve, accept, and then prepare before he was born. I don't know if I could have handled my grief along with his serious illnesses at the same time. We have chosen to do some testing with this pregnancy...nothing invasive, just ultrasound and blood work. The baby's nuchal fold was measured this week, along with my hormone levels. My results came back with a 1 in 2071 chance of this child having Down Syndrome and <1 in 10,000 chance for having Trisomy 13 or 18. While these numbers are not definites, they are reassuring. We will have a 20 week ultrasound and a 24 week fetal echocardiogram and unless there are any markers, we will be good with this amount of testing.

3. Do you want a boy or a girl?
Trust me when we say I want a health child, I really really mean it. But if I had to choose, pink would be nice.

4. So you are going to have two kids under the age of 3....are you crazy?
Probably. However, we both felt it was time. We always wanted 2 kids. Plus the idea of Gabe having a sibling is a really nice thought. Not someone to take care of him....he will be able to take care of himself, but another person to be his family...to grow up with. I thought long and hard about whether I wanted another baby or Gabe to have a sibling and I've decided the answer is both and that is when we decided we were ready to have another child.

That is it for now. I will keep you updated as things progress.

vacation was great

2011-05-15T11:39:00.001-07:00

We are adjusting to life without the beach. We had a great time and Gabe loved it. St.John's Virgin Islands is a long trip, but beautiful.

We made it!

2011-05-04T06:45:00.000-07:00

After a long day of travel, we made it to st,John virgin islands. All the kids did great. Gabe did awesome on the plane and ferry. It is beautiful here. We are on the search today for a sandy beach as the one by the house we are staying at is by a big drop off and rocky. The house is nice and big and open. However, this means bugs get in and no air conditioning. So far it is breezy enough not to be uncomfortable. Gabe is loving hanging out with the other kids and we are looking forward to relaxing today.

5 more days till vacation!

2011-04-27T17:31:00.000-07:00

We're going to the beach. I'm so excited. We'll see how Gabe likes the sand.

Gabe sings and signs

2011-04-13T05:24:00.000-07:00

3/21 World Down Syndrome Day

2011-03-21T18:11:00.000-07:00

120110306 094705

2011-03-17T15:57:00.000-07:00

brown bear brown bear what do you see?

2011-02-28T18:06:00.000-08:00

I'm so glad February is over. Bring on March. Bring on Spring. Poor Gabe had a bad cough at the beginning of the month. Then we all got the stomach bug. We are hopfully now all on the mend. His Gtube is bothering him a little lately. It looks good, but I changed it out and put a new tube in yesterday thinking maybe it was just positioning. He's still a little sensitive today. I think it may be getting a little tight and he may be ready for the bigger size now. Eating has not gone very well this month due to all the sickness, but luckily, Gabe's weight is still up. He is doing well with transitioning movements. He is able to go from sitting to rolling, to sitting, to crawling position, to sitting, to pulling up on his knees to sitting and throw some splits and flexed hips in there as well. He's frogging around in his walker. We finally babyproofed everything. I think I'm the only person who is greatful to finally be babyproofed. Still no active crawling, still no active walking, but he's getting closer. He's picked up alot of signs lately. Gabe can now sign: eat, drink, diaper, goodnight, book, more, help, mom, dad, up, play, bye. I went to the Central Kentucky Down Syndrome Association Conference in Lexington on Saturday. One of the ENT's at Cincinnati Children's spoke about sleep apnea. I am really thankful Gabe's apnea was caught early. It was very interesting talk. I also went to a talk that a ST did that gave me some good ideas. She had a bunch of free ipad apps to help with speech. She also suggested using the voice recording cards you can buy pretty cheap at Hallmark and taping pictures on them to help. For example, have a picture of daddy blowing out candles on his birthday and record daddy's voice saying "daddy. it's daddy's birthday. Daddy is blowing out candles on his cake. happy birthday daddy". She also emphasized word completion. For example, have a picture of a cat (can print these from clipart). When they say cat, give them a picture. If they say "ca", tear the cat in half and give them half of it since they didn't complete the word. Emphasize the end of the word and they can have the whole cat when they say the whole word. She also emphasized, when your child starts saying words like "ball", it's okay to get excited, but don't pick them up and hug them, and give them m&m's...give them a ball...they did ask for it afterall. Those were the take-home points. They also had a speaker talking about the grant KY passed to fund the Best Buddies program to help kids with DS go to college. It was very inspiring. It sounds like UK, and especially NKU are really paving the way for this in the state...go Norse!

February....blah!

2011-02-09T13:39:00.000-08:00

We've had a sick couple weeks here at the Lawrence household. I am finally on the mend. Poor Gabe started with a cold on Friday night. His fever got up to 102. He was so pittiful. He slept in our bed that night so we could snuggle with him and watch him close. This is not something I plan on making a habit, but it was nice to do it since we have never been able to with the overnight feeds. He's feeling better today, but is still a little drainy. He has been off night time feeds for about two and a half weeks now. His weight on Friday showed that he lost about 7oz. I was pretty disappointed. It took him a week to adjust to the daytime feed schedule and now he's been sick and not eating well so it doesn't suprise me totally that his weight it down. We go back in 2 weeks for another weight check and if he's still down, then we might have to change something. I'm really going to try to advocate not going back to night time feeds.
We are starting to see our PT's assistant this week. She is nice and we are hoping Gabe responds to her a little more. We really like our current PT, but Gabe freaks out when he sees him, so we are hoping this new face will trick him for at least a couple visits. Gabe continues to walk in his walker, but he still is unsure that he has 2 diffent legs that don't have to move at the same time. He still protests crawling. We are working on abdominal strength. I keep getting the feeling that as soon as he gets strong enough, he's going to do everything all at once....at least I hope.

Brrrrrrrr....it's cold outside

2011-01-23T17:47:00.001-08:00

I haven't posted in awhile...I didn't want to jinx it. Gabe has been off night time feeds for a week! When we went to GI a week ago, his weight was up to 22 lbs which is 70th% on the DS chart. His height is anywhere between 60-80th% depending on how much he is squirming. Because he is gaining weight and eating well, we took off the night time feed and added on a 4th meal during the day (this is still a 3oz deduction of formula per day). The difficult part is that on top of his feeds, he needs to take 20oz of fluid a day. He doesn't like to drink from a cup and it's hard to make him thirsty when you have to space out 20oz throughout the day. We're trying to really push the cup in the morning especially, and starting to give him the supplemental water towards the end of the day. We are trying to give the majority of it between 8pm and 11pm when Gabe is sleeping. Problem is, he wakes up in the middle of the night having pee'd through his diaper. So now I'm trying to change him before we go to sleep in hopes he sleeps through it. The past 2 nights it has worked. We'll see. We just have to figure out a schedule that works for him.

We went for an evaluation at the Down Syndrome clinic at Children's last week. We met with a doctor, OT, ST, Dietitian, and Social Worker. The good news is Gabe is doing really well with speech. His expressive language is about 15 mo old. His receptive language is 16-17mo. Considering he is 18 mo old, we were really happy with this. The big delay was with OT. Gabe needs to work on fine motor. A lot of this delay is from his shoulders being weak. Also, Gabe refuses to crawl, and not being up on all fours can lead to delays in this area. He holds a crayon briefly. He doesn't want to put things in containers. He doesn't stack blocks. He doesn't self feed. The movements with his arms are very spastic and he throws everything. It didn't suprise me, but I was concerned when they said he was delayed with fine motor even for a child with Down Syndrome. So, they suggested we add OT and Speech at their clinic every other week to specifically work on self feeding. This is on top of the OT and ST we get with First Steps who come to our home. We have physical therapy 3 weeks/mo, speech therapy 2 weeks/mo, developmental intervention weekly, and occupational therapy once/mo. Now we will add these two on everyother week. I don't want to overdo it for my sake and Gabe's. I'm thinking when our next review period comes up, I'll rework some things. I may take away the once a mo OT, add on an extra week with PT and have our DI continue to co-treat with other therapists. It's overwhelming thinking about it, but we'll make it work. In an effort to work on fine motor, we tried fingerpainting tonight. He liked it!

Gabe is also doing great standing up without holding on to anything. He also is really scooting in his therapy walker, so we're pushing that as well.
I promise we do put 2 socks and 2 shoes on Gabe everyday. He just prefers to take them off all the time.

Happy New Year

2011-01-02T12:29:00.001-08:00

Gabe had a really good 2010...here's to an even better 2011. Gabe has been such a joy lately. He is waving consistently. He started saying "mama" at about 16 months, but he is now doing it purposefully and with his lips together. He also started signing for book. Just this weekend he learned how to dance. He is also learning his legs can move seperately and is "walking" with less help. He is also eating much better with minimal rasberries. He is off babyfood and I feel like we are definitely making progress. Thin liquids continue to be an issue, but he does pretty well with the yogurt drinks that are a little on the thicker side. We go to GI in 2 weeks and I'll be interested to see where his weight is at and if we can back off some tube feed volume....fingers crossed.

sleep in heavenly peace

2010-12-25T18:35:00.000-08:00

Gabe had a great Christmas...we all did! He's fast asleep now. We started out yesterday by going to Grandma Marcia's. Gabe got lots of clothes and toys.

We then went to Grandma and Grandpa Beiting's and got a grocery cart that is the perfect height to practice standing.

On Christmas day, we spent the morning together. Our good friend Erin came by to visit. We then went to the extended Maher family and Beiting family. It was such a great time.

I forgot to post last week that we're working on walking with the walker our PT got us. Gabe is still figuring out, but at least he likes it.

Merry Christmas everyone!

great weekend

2010-12-12T16:42:00.000-08:00

We had a really great weekend. On Friday Justin and I had a night out which was tons of fun and much needed. We had a great time at Belterra. We went to lunch on Saturday for Justin's Grandma's 90th birthday. Today we went to Union Terminal Children's Museum with the DSAGC and saw the toy trains (and Santa again). Then later today we went to a football party. I'm wiped. Gabe is doing well. He's been blowing rasberries at us for the past 2 weeks while he is eating. Today he actually did really well. He has had a little cold that I think he's finally getting over and actually ate really well today without spraying me with food.

Ho Ho Ho

2010-12-05T18:29:00.000-08:00

Gabe met Santa and Rudolph today at the DSAGC Holiday Lunch and Awards Ceremony. I thought he would freak out, but he clapped and smiled and was very excited to meet them. He must be trying to butter them up so he'll get some really good presents.

December here we come!

2010-12-01T18:04:00.000-08:00

We have been very busy around here lately with lots of holiday fun. Gabe is doing well. We're really pushing the honey bear cup lately to try to get him to drink out of a straw. He puts his lips around around the straw well...just needs to figure out how get the liquid out. We have also been working alot on transitioning movements from sitting to crawling and sitting to standing. He is doing very well with it...just requires lots of repitition. Gabe has also been very loud lately. He is making some great sounds. He can BZZZZ like a bee and say BRRRRRR when it's cold out...too cute.

What's missing from this picture?

2010-11-16T18:28:00.000-08:00

...look closely
That's right! All this stuff!

Gabe is off oxygen at night! The sleep study in July showed that he was growing out of his apnea. His oxygen saturations are great. He looked great today at his doctor's visit and the Pulmonologist said it was time to take him off. What great news! They will do another sleep study in July just as a screening. Gabe also had a hearing test today and he passed. While he was the lower end of normal (especially in his left ear), his hearing still came out okay with the tubes in place. He has a little wax that the ENT will have to get out at our next appointment, but it's good to know he can hear us. At dinner tonight, Gabe was signing more for food and reaching for his sippy cup. While he still isn't crawling, he's starting to pivet on his belly some and be less opposed to pushing up, shifting his weight and reaching for stuff....I feel good things are coming our way. Go Gabe Go!

Pictures from the past 2 weeks

2010-11-14T09:13:00.001-08:00

Very sunny day. Garden of Hope, Covington, Ky overlooking downtown Cincinnati. Gabe liked the view.

Swim Class

Look mom I'm a fish!

Halloween costume #2 - R2D2

Pumpking painting...mmmmm corn syrup and food coloring

Han solo, Princess Laya, and R2D2 (the yoda costume was better)

ECHO, Echo, echo

2010-10-28T18:39:00.000-07:00

Gabe had his first Echocardiogram in year. His heart looks really good. He has minimal leakage around his mitral and tricuspid valves and the doctor couldn't even hear a murmur. What does this mean? We don't have to go back to Cardiology for a year and he can come off Captopril. We are so thankful.

May the force be with you

2010-10-24T18:27:00.000-07:00

Gabe went to a Halloween Party on Friday. He was Yoda...the wise one.

On Saturday we went to a Pumpkin Patch. Gabe picked out his very own Pumpkin.

They had a petting zoo. He wasn't too interested in petting the animals, but they did get his attention.

I haven't been updating as much as I'd like. We've been so busy and I have started a new position at work, this month has just seemed to fly by. Gabe is doing well. Feeding is progressing slowly. Drinking is still the hard part. We have our IFSP meeting with all of our therapists for Gabe's 1 year review this week. Our biggest issue is gross motor. Gabe has no desire to move. Even if we take his toys away to make him get them, he'll just play peek-a-boo and crack himself up. As soon as he sees our PT, he screams. He knows PT is only 45min and he can scream the whole time. He likes his bouncer, kneeling, pulling to stand, and reaching up while kneedling on the stairs, so we're trying to work on that. He just hates being on his stomach to crawl or roll consecutively. The hard part is, we know he's strong enough. We know he can do it. I think he's just that stubborn. For awhile, we were thinking he had some vestibular sensory issues where he didn't like feeling off balance, but he loves to swing and be bounced around, so I don't think that's the case. We're trying to sneak in therapy before he realizes he's working. Our new technique may be even leaving him in the hallway with no toys while we are in the next room and make him work his way towards us. It's a change in thinking that's for sure. We've always been in his face to stimulate him in some way, and now he's going to have to work for that stimulation. I am happy from a cognitive stand point that he's challenging us so much, but he really needs to start showing some type of movement. Patience.

His speech is really progressing. He yells for attention. He has finally started saying "mama" about once or twice a day. He is mimicing B's, S's, T's, etc. He has become quite the chatter box.

Our bedtime routine has also been great. Since Gabe started teething, he would always be fussy at bedtime and want his pacifier. It became a struggle and he would cry so hard when we would leave the room. We stayed strong and after a month of crying at bedtime, he is finally going to bed without a problem. We read a story, sing a song, kiss goodnight, put him in his crib, he rolls over and is a sleep within 5 min. It's awesome.

Speaking of teething. Gabe has his 2 bottom teeth in. His left bottom canine has recently cut. His top left tooth is very close, and the poor kid is getting a huge molar on the bottom left that just feels painful.

We have our year post op Cardiology visit on Wed. I'll post about it later in the week. Here's hoping to good news!

When autumn leaves start to fall

2010-10-03T18:30:00.000-07:00

My Grandma Beiting makes homemade goetta (it's a Cincinnati German thing). Anyway, I decided to see if Gabe likes it...how could he not?...it's delicious. He took 4 or 5 good bites and then I think he decided he'd rather play with it and get it in his hair. We're playing around with different textures for him. He tried meatloaf and mashed potatoes last week and did pretty well. I made more potatoes for this week. We're also working on regular oatmeal. He starts off doing really well with it, but I think he tires out quick with the thicker texture, so I'm trying not to concentrate on volume. He still doesn't want to drink from a cup. I think he's aversed to thin liquids. But I did get him to drink out of my water bottle and he did great...I don't get it. We are getting good sounds out of Gabe. He's mimicking us with b's and m's. We're also doing lots of sing-a-long songs with hand gestures. He is now consistently putting his hand on his head for "5 Little Monkeys" when they bump their head. We are also working on "Itsy Bitsy Spider". He likes grabbing for my hands when I do the motions. Gabe has recently been putting his 2 thumbs together. We thought that maybe it was "more", but his "more" sign is more obvious with all his fingers involved...this was just the thumbs. We think we figured out tonight that he wants more "itsy bitsy spider" and is signing the spider going up the web. He seemed so excited that we figured it out...at least I think that's it. I'll have to keep trying tomorrow.

Justin and I have been a little discouraged lately with Gabe's gross motor skills....or lack of I should say. He rolls on and off his belly, but not consecutive rolls and he generally hates his belly. He refuses to crawl. He can push from lying to seated and pull from sitting to standing with minimal help. He just isn't mobile at all. He screams with physical therapy to the point where PT says he's acting like we don't make him work...but we do. We work with him alot. True he is our only child and he is not in a daycare environment, but he definitely is not held all day. We let him cry till he calms a little before picking him up. I just don't know what to do. Our year eval with our early intervention team is coming up soon and I'm trying to think of a new way to approach physical therapy. Gabe has been through so much over the past year and I think he's come a long way. It's just hard when other kids his age are running all around him and he doesn't even care if he has to sit there. He doesn't even really lunge for a toy out of reach. He likes kneeling, so I thought we could work on that. He also seems to get less mad in other rooms of the house like his bedroom, the staircase, etc. Maybe we could move around the house more. Also, Gabe loves being outside, so maybe we could do some sessions in the yard. Our OT is having us work on some vestibular sensory things thinking maybe he just is fearful of falling and feeling off balance. We are also putting him in these spandex mermaid pants to help decrease his base of support while sitting and help with rotation. I know it will come, I'm just trying to think more creatively because the hour long screaming sessions are no fun.

Happy Heart Day Gabe!

2010-10-01T15:20:00.000-07:00

1 year ago, Gabe had open heart surgery. What a scary time that was. We love our strong little man.

Buddy Walk

2010-09-14T18:31:00.000-07:00

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

2010-09-09T18:27:00.000-07:00

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

2010-08-27T18:49:00.000-07:00

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?

2010-08-16T18:36:00.001-07:00

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

2010-08-08T11:25:00.000-07:00

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

2010-07-27T18:33:00.000-07:00

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

2010-07-20T18:41:00.000-07:00

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.

Pictures from Gabe's Birthday

2010-07-11T16:18:00.000-07:00

Aquarium

mmm...icing

Curious George cake

ball pit

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

pictures

2010-07-08T18:19:00.000-07:00

http://vimeo.com/13186690

Happy Birthday Gabe!!!

2010-07-08T08:12:00.000-07:00

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!

7-7-07

2010-07-07T19:09:00.000-07:00

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

4th of July

2010-07-06T12:01:00.000-07:00

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

2010-06-29T18:52:00.000-07:00

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

2010-06-20T18:17:00.000-07:00

Hot town summer in the city

2010-06-12T15:35:00.000-07:00

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

2010-06-03T18:39:00.000-07:00

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

2010-05-16T18:09:00.001-07:00

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!

2010-05-09T18:22:00.001-07:00

I had a great one.

exhausting week

2010-05-07T14:56:00.000-07:00

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

2010-04-24T17:28:00.000-07:00

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

2010-04-04T18:44:00.000-07:00

Swim class

Playing outside

Happy Easter!

The many emotions of Gabe

2010-03-31T18:47:00.000-07:00

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

2010-03-24T18:03:00.000-07:00

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

2010-03-13T18:02:00.000-08:00

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.

2010-03-01T18:15:00.000-08:00

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.

Seven and half months...Gabe rolls over.

2010-02-22T18:45:00.000-08:00

That's right! On friday Gabe rolled over back to belly by himself. Now, he's doing it all the time. He still gets his arm stuck at times, but when he manages to lift his head up, he looks so proud. We started PT on Friday with Mr.Dan. He taught us how to work on Gabe's core muscles. Gabe now bench presses a spoon to build up his pecs...it's hilarious.

A Tuesday full of Appointments

2010-02-18T18:18:00.000-08:00

This past Tuesday, Gabe had a feeding eval, an appointment with the Down Syndrome Doctor, and a hearing test with audiology. The feeding eval went well. The speech pathologist actually said he did better than she anticipated. She tried a low flow cup and he did really well. She then tried a regular cup and he coughed and gagged, but the low flow cup is promising. He ate well and she said what he had was more of a coordination issue. He can move his mouth, he just needs to learn how to use all the muscles together to draw the food back and swallow larger amounts. Overall, it was very positive. The appointment at the Thomas Center with the doctor was fine. She said he was looking good and answered some of my questions. We then went to check Gabe's hearing. He is cooing and making noise, so I wasn't really concerned about his hearing, but he dose have narrow ear cannals which is common in Down Syndrome and it should be checked more frequently. Gabe failed his hearing test. He has some fluid in his ears which is making his hearing alittle muffled sounding. We have an appointment with ENT and we'll see if he needs tubes. I was pretty sure tubes were in our future.

Gabe has enjoyed the snow days home with dad.

Beautiful Blogger Award

2010-02-14T16:20:00.000-08:00

Thanks to Aimee at Aimee's Bowl of Cherries for nominating me for the Beautiful Blogger Award. This blog has been one of the best ideas I've had. Thanks to all those who read my ramblings. Here are the rules:

1. Thank the person who nominated me for this award

2. Copy the award and place it on my blog

3. Link to the person who nominated me for this award

4. Share 7 interesting things about myself

5. Nominate 7 bloggers

Here we go!

7 interesting things:

1. I am a nurse at Cincinnati Children's Hospital. I've worked there for 8 years now, 7 as an RN. I took my nursing boards the week of my 21st birthday. I've always wanted to be a nurse. I work in an Endocrine/Diabetes Clinic.

2. I was very sick as a child....mainly as an infant. I was 3 months premature and weighed only 2.2lbs...I got down to 1.9lbs. I had many complications, PDA, bacterial spinal meningitis, RSV, jaundice, gavage feedings, etc. I had PT as a toddler and had casts on my legs. When Gabe was so sick I kept telling myself that he hasn't been through anything I haven't been through (other than the Gtube). We have matching scars from heart surgery (except mine is horizontal). I was pretty tiny.

3. I can play music. I took 8 years of piano lessons and taught on and off for 2 years. I taught myself a little guitar in college. I don't really like playing in front of people. I'm a little out of practice because I've been so busy, but I really need to get back into it. I miss being good.

4. I am addicted to the Food Network. I watch it all the time. I really like to cook and thanks to my mom and the Food Network, I think I'm pretty good at it. Justin sometimes makes fun of me for watching Iron Chef.

5. I love to be outside. Oh how I am craving Vit. D in this yucky grey month of Feb. I missed not being outside much this past summer. I can't wait for the weather to get warm again. Gabe and I will be going to the park and going on walks and haning out in the babypool out back. Hopefully Justin and I will get some hiking and canoeing in too.

6. Growing up, my family had theme week once a year. That week, my mom would make mexican, italian, german, chinese, etc. for dinner every night during the week. Each night was a different ethnicity. We played music, ate, and drank that country's cuisine. It was great. I've had theme week once since Justin and I have been married, but I think I'll have to keep it up at least once a year.

7. Justin and I met 6 years ago at a bar called Soupie's listening to an 80's cover band called the Rusty Griswold's. We try to catch them live in action about once a year. They're so much fun!

I'd like to know more about:

1. Bo and Geneva at Hudson Bradford
2. Stephanie a A Beautiful Life

3. Amy at The Fledge Farm
4. Erin at Gabriel (I give you a pass if you don't do this since you are due any day)

5. Jenni at A Little Something Extra For Us

6. Sasha at The Wonder of Wysdom (I know the Stevenson's put you down for this as well and I believe you've been nominated before, but just in case I'm wrong, I had to put your name down. Your blog is very heartfelt and you have given me great support the past 7 months)

7. Andrea at Baby Dreams (this is not a DS blog, but it is a great blog of our close friends and their journey of having a family. Gabe can't wait to meet his new buddy!)

A blog post isn't complete without Gabe. Check out the new pics of little man! Just ignore Justin's guiness pajama pants.

Everyone loves pictures!

2010-02-06T18:11:00.000-08:00

Gabe had lots of immunizations/vaccinations this week. He is doing well and has really made strides this week. He totally impressed the OT on Friday with his tummy time skills.

It's a winter wonderland outside and Gabe got to put his hands in snow today....he'd rather have his hands in his mouth. I promise Gabe's highchair is not outside on the deck in this picture...we had the blinds open in the breakfast nook so it just looks like he's outside...we brought the snow inside for him to play with.

Gabe loves BoBo the Bear

2010-02-01T17:45:00.001-08:00

The results are in...

2010-01-26T06:45:00.001-08:00

Gabe had 2 doctor appoitnments last week. Here's how they went:

Pulmonary: Gabe's sleep study showed that he has both central and obstructive apnea. The obstructive apnea has greatly improved, but is still there. It is very positive though that he is growing out of it. ENT may be consulted in the future to see if he needs to have any surgery to widen his airway by taking out retnoids/adnoids, or doing tongue thining, but for now, he just wants to watch it and let him continue to grow and get stronger. Gabe originally had 27 obstructive episodes per hour when his airway was swollen from his reflux. After extubation from heart surgery, he had 17 episodes per hour. The past study showed 8 obstructive episodes per hour which is consistent with moderate apnea. I'm so glad it keeps improving.

He also has central apnea. Central is when your brain forgets to tell your body to breathe. The Pulmonologist thinks that Gabe is doing this because he was so use to having low oxygen levels the 3 months he was in heart failure, he built up a pretty high tolerance for 85% oxygenation. Because he has this high tolerance, he pauses his breathing in his sleep till his oxygen levels get in the mid 90's and then takes a breath. This pausing is preventing him from staying in REM and "waking him up" every 2 minutes. We have to retrain Gabe's brain to know that 100% is normal oxygenation and he should breathe more and not settle for 96%. In order to do this, we are continuing on with the oxygen at night and going up from 0.12L to 0.25L of oxygen to ensure he is always 99 or 100%. Another sleep study will be repeated in July.

Opthalmology: Gabe has nastigmus (sp?). This is when your eyes kind of rattle back and forth. There are a bunch of different types. Gabe has the kind that is often associated with Down Syndrome and goes along with low tone. It's mild and there is nothing that they want to do about it. Gabe is also slightly far sighted, but most babies his age are. Everything looked good and they are going to do another checkup in 4 months.

Feeding can still be a little discouraging since Gabe likes to spit his food back at us, but we keep staying hopefull. I'm also trying to get Gabe into PT soon. All the appointments, plus therapy, plus working 32 hours a week keeps me busy busy!

so cute!

2010-01-16T14:10:00.000-08:00

Thanks to our friend Maria (www.myspace.com/mwilliamsphotography) for taking Gabe's 6 month pictures!

mmm...cereal

2010-01-10T09:55:00.000-08:00

Gabe's poor little cheeks are red and dry from his oxygen tape. I really hope we can get rid of it soon!

Feeding continues to be the biggest thing we are working on with Gabe. Gabe could always suck, but his reflux was so bad and the irritation was causing his airway to swell, that he required a Gtube with Nissen when he was 2 months old. After heart surgery, we started working on formula thru a nipple, but by that point, he had kinda forgotten how to do it. We were working on syringing small amounts of formula thru a nipple, but that was a challenge as well. Gabe has lost his sucking reflex when it comes to a bottle. This happens to babies around 5 months of age. Babies typically get nutrition from bottles, then rely on their learned behavior to suck on a bottle to get food. Because Gabe did not have this (and never really had a positive experience bottle or breast feeding), we decided to go right to cereal and sippy cup. Gabe currently takes about 1 Tbsp of rice cereal on average..sometimes more, sometimes less. We offer his cereal as his tube feed is running so he can associate feeling full with eating by mouth. The good news is, he moves his tongue well, his bite is strong and he really likes it which means he does not have an aversion. We are really working on him pulling his lips together when he takes the cereal off the spoon. He does spit alot of it back at us. The Occupational Therapist said it's not really tongue thrusting, just exploring more or less. He likes to play with it more than anything. We also don't think he realizes that having something in his mouth means getting full. It's hard not to lift up with the spoon once it's in his mouth or just shove the spoon in his mouth to get some in there...that would be doing the work for him which is a big no no and force feeding could lead to aversion down the road. The OT warned me that feeding is the most emotional thing he will have to accomplish, especially for mom's. It's part of that nurturing thing I guess. It is difficult. It requires lots of patience. It is also hard to leave him with others during feeding times b/c tube feeding can be intimidating and is a skill that has to be learned. I really do have a love/hate relationship with this Gtube. The goal is to get it out by Oct.1st...one year after his heart surgery. As patient has you have to be, how can feeding him not be fun when you get smiles like this?!

Happy 6 month Birthday Gabe!

2010-01-08T17:59:00.000-08:00

You bring us so much joy. We love you.

~Mom and Dad

Golden Slumbers fill your eyes...

2010-01-05T18:04:00.000-08:00

Gabe's sleep study was last night. He never desated below 92%, so they kept the oxygen off. He did have some noisy breathing and I think I heard a little pausing, but I feel like it was an accurate depiction of how he sleeps at home. He slept about 7 hours hooked up to all the equipment which was much better than last time. Mama on the other hand only got about 5 hours. We go to pulmonary clinic in 2 weeks. They held the CPAP mask up to him to see if it would fit while we were there and it looks like it would....we'll see what they say in 2 weeks about whether or not we'll need to use it.
I also started back to work on Monday. After being gone for 6 months I'm trying to learn and relearn some things, but I feel good about it overall and I managed to make it through the day only calling Grandma Marcia once to check on Gabe. I'll post pics later this week.

up-dog

2010-01-02T17:37:00.001-08:00

New Year's was fun. We had some people over and Gabe managed to sleep thru the whole party all the way to 6:30am..yay! 2009 had some very rough moments and some very good moments...I am glad the year is over. I know 2010 will be great. Check out Gabe's tummy time. He's definitely coming along. I apologize for the blurry pictures, but it's hard to capture an action shot. Also, the tan tape on his cheeks is duoderm tape we put on his cheeks at night. We put his oxygen nasal cannula on top of the duoderm, and hypofix tape on top of the cannula to hold it in place. The duoderm helps protect his cheeks from getting too red.

Holidays

2009-12-30T06:57:00.000-08:00

Christmas was fun. It was nice seeing all the relatives and introducing him for the first time (it was the first time many have met him). I think he was a little shocked by it all. He's not use to so much stimulation. He had very fussy nights Christmas Eve and Christmas Day, but the routine is back in action now. Early last week, I took Gabe in to see the surgical Nurse Practitioner. I went to nursing school with her so it was nice catching up. His Gtube was looking alittle questionable and was sore. Turns out it had some yeast on it, so we've been using Nystatin powder and it looks much better now. Gabe has sounded a little congested lately. Not sick, just stuffy. Babies with Down Syndrome tend to have narrower nasal passages, so they may get clogged up a little more. We're using saline in his nose and a nasal aspirator I got at Babies R Us that works like a charm. His sats have been great, he just breathes a little heavy when he's clogged. Gabe has also been extra gassy for about a week now. He has these screaming fits 2-3 times a day where he just sounds like he's in so much pain. I know he's tolerating his feed b/c he's fine with it while he's sleeping, his belly is soft, and he's had plenty of dirty diapers...he's just gassy. Gas is difficult for Gabe b/c he had a Nissen procedure done with his Gtube surgery. This is when they wrap the stomach around the top of his esophagus to create a one way valve of food going in, but not coming back out. This has really helped his reflux. However, it also means that he can't vomit or burp. In order to relieve the gas, we attach a large blunt syringe to his gtube and let the gas bubble out. All you can really do is vent him, give him Mylecon or Tylenol and let him cry it out. I took him to the pediatrician yesterday for them to check him out just to make sure I'm not missing anything and they said he looked great. Other than having a gurgly sounding belly he was great, his lungs were clear, his belly was soft, and his exam was unremarkable. So, I started venting him multiple times a day (even when he's not fussing) and massaging his belly. Any other suggestions from the Gtube mammas out there on how to deal with gas? The big thing is now that we're introducing cereal (this is week 3), I don't want him to associate pain with eating. I really have a love/hate relationship with this gtube.
Here are some Christmas pics. Gabe was spoiled of course. He got some clothes, rattles, bath toys, push toys, books, a baby pool, and a gtube friendly bathing suit.
After being off for almost 6 months, I go back to work on Monday...I'm having mixed feelings about it.

Gtube and Pulse Ox friendly PJs...yay!

2009-12-17T16:52:00.000-08:00

Thanks to the Dickens family at A Little Something Extra for Us for the pajamas!

Bless all the dear children in Thy tender care....

2009-12-16T17:31:00.000-08:00

Gabe is getting a little stronger everyday. With that strength, he has really gotten good at pulling his oxygen off when he sleeps (he's on oxygen for his apnea). The pulse oximeter never alarms so that leaves me hopefull that his apnea has improved. Either way, we have to really tape the cannula to his cheeks so it will stay on. If he's tired enough he doesn't care. The next sleep study is scheduled for Jan.4.

Christmas pics

2009-12-13T16:22:00.000-08:00

Gabe is doing well. I've noticed lots of improvement with lifting his head during tummy time. In general, he has been very happy. He sleeps really well at night. I'm trying to work on a nap schedule. All I want is for him to take a morning and afternoon nap. Even 3 one hour naps would work. He just wakes up after 15 minutes if I lay him down. I think he gets tired more frequently b/c he has to work hard with his low tone. This makes him take cat naps....at least that's my theory. Any recommendations on how to get a kid to nap longer than 20 minutes without you holding him? I'm trying to rock him, put him in his crib and leave the room. When he wakes up, he doesn't cry, he just plays and is wide awake and then he gets tired an hour later. I can't complain b/c he is sleeping 10 hours at night and usually doesn't really wake up. Napping would just be nice to give me a break to do chores, scrapbook, read, etc.

Aunt Andrea came over this week and took some pictures of Gabe for the Christmas card. He was so cranky. He was tired, then hot, then hungry and the smiles were few, but he was still cute. Here are some that are good, but were not chosen for the card.

What about Gabe?

2009-12-09T17:28:00.000-08:00

It's been awhile since I posted. Gabe had his immuni-zations last Thursday and he was so fussy for 2 full days afterwards. It was a little discouraging b/c he didn't want to play much or reach for rattles or lay on his belly...just be held while mommy bounced him. He has been pretty happy and smiled alot the past 2 days which has made me feel much better. We have been doing core and shoulder strengthening exercises that the Occupation Therapist recommended. She told me today that he is very delayed with his motor skills...about a 1 month level. This was very hard to hear, but then I remind myself that he did have open heart surgery 2 months ago and he was in a hospital bed for 3 out of the first 4 months of his life. I should give the little guy a break. If I think about everything he's doing since he came home from the hospital, I feel more encouraged. He doesn't seem too far off socially or cognatively. He communicates well with his smiles and cooing and pouty face. His abs, shoulders, and pecs are just really weak. The good news is, the muscles in his mouth are getting stronger. We massage his gums and face and just today, we started tastes of rice cereal. Gabe loves it! We want to make these initial tastes as positive an experience as possible and not force anything to make Gabe unhappy with feeding. We just rest the spoon on his bottom lip and let him lick it in his mouth. You really have to fight the temptation to give him a whole spoonfull right in his mouth.....as Bob would say...we're baby stepping.

Gobble Gobble

2009-11-29T16:02:00.001-08:00

Had a nice weekend. I did lots of shopping. We didn't take Gabe to Thanksgiving. He will just be getting his first round of immunizations this week (you have to wait 8 weeks after heart surgery). We didn't want to risk it with all the stuff going around. Justin and I traded off so we each got to eat some food and see our families for alittle while. Gabe's oxygen monitor was reading lower oxygen sats again on Thursday. It just didn't make sense. It was 94% and then when he woke up it was 92%. Other than a little stuffy nose, he looked great. So I turned off the machine, changes the probe site, disconnected then reconnected the probe to the machine, turned it back on and held it tight against his foot. It then read 100%. That's right...we have a box of crappy probes. I should have done all this earlier in the week when he was reading low, but with him having a little cold, I wasn't sure and obsessed over the numbers. So turns out he's just fine and we probably didn't even need to go to the pulmonary doctor earlier this week. Live and learn. First Steps therapy starts this week. I'm excited. I really want to start working towards Gabe eating thru his mouth.

Turkey Turkey Turkey

2009-11-25T17:03:00.000-08:00

This week has been busy. Gabe started breathing a little fast on Sunday. I didn't think too much of it, just watched him close. Overnight from Sunday to Monday, his oxygen saturations were in the low 90's on 1/9 L of O2. Normally he's 98-100%, so I thought this was odd. I called the Pulmonologist Monday and they said to come in to clinic. His chest Xray looked clear, but it did look a little hyperventilated. This could mean a number of things. 1. Gabe has Asthma. They gave him Zopenex and that helped with his work of breathing, but he never had any wheezing, so it's not enough to quantify a diagnosis. 2. His reflux is working it's way past the nissen and irritating his throat area. They went up on his Prevacid dose to help with this. He was due for a dose adjustment since he's gained a good amount of weight. 3. The pressures in his heart are off and his Captopril dose would need an adjustment. We got an ECHO and his heart looks great so this is not the case. 4. He's getting a cold. I kept him on the pulse oximeter for 24 hours straight and he never dropped below 97%. He did sound a little stopped up in his nose today, so maybe he did have alittle bug. I'm not sure, but he's looking good now. Gabe also had a feeding evaluation today. We met with the Speech Pathologist at the Thomas Center. Gabe does really well with rooting, moving his head towards the pacifier, facial expressions and cooing. He loves dip tastes. They were abe to syringe formula over the pacifier and he took it well. They then tried a bottle and he really just did a lot of non nutritive sucking. This means he sucks at the bottle for comfort, not to really get formula. Whenever she squeezed formula thru the nipple into his mouth, he kinda paused for a second as if to say, "what the heck is in my mouth?". He eventually gagged a little. So, the good news is he's got a strong suck and he seems to like it. The bad news is, it's going to be a little bit of a slow process. He hasn't had anything of substance in his mouth since Sept.10, so he has to re-learn how to feed and get use to swallowing liquid again. So, we will be syringing small amounts of formula over a pacifier to get him use to this sensation.

I found out I was pregnant with Gabe last year on the Saturday after Thanksgiving. Alot has changed over the past year...I've changed too. I'm so thankful for Gabe. He makes us smile everyday. He is a huge responsibility and alot of work...more work than a "regular" child, but I think I'm thankful for that too. Back in April I never thought I'd say this, but in a way, I'm thankful for Down Syndrome. I'm thankful for having a baby with special needs because everything becomes about an achievement and what my child can do. Gabe is cooing to Justin right now and I can hear his excitement in the other room. Earlier today, he held his head up so good while sitting on my lap. Would I notice these things and cheer him on and feel a great sense of pride with every single skill and milestone if he didn't have Down Syndrome?...perhaps not. For noticing these small milestones, I am very thankful. Part of me is even thankful for heart surgery...hear me out on this one. Without heart surgery, Gabe would never have been hooked up to monitors. Without monitors, Gabe's apnea would have never been diagnosed. Undiagnosed apnea can lead to cognitive and behavioral issues ...so, in a way, I'm thankful he was on monitors for 2 months and this was detected so early.

It's bedtime for Gabe. Have a great Thanksgiving everyone!

Doctor Doctor Give Me The News

2009-11-18T16:44:00.000-08:00

It's been busy busy. Yesterday, Gabe had a follow up appoingment with the Pulmonologist to discuss his sleep apnea. We will be repeating a sleep study in January and then go back to the Pulmonologist to review the results and see if there are any changes and see again if the oxygen at night is helping him. From there, we will see if a CPAP mask fits him yet. They may also do a sedated sleep study in the future to see at what point in the throat area he is obstructing. Once the obstructive part of the apnea is treated, they'll be able to make sure there is no central apnea. Central apnea would mean there was something physiologically off with his brain making him pause his breathing when sleeping. Really hoping no central apnea. For now, he thinks it's just the obstructive apnea and we'll find out more info in January. He was very happy with how good he looked. Yesterday evening we met the Occupation Therapist and Developmental Coordinator who will be working with Gabe. We set goals for the next 6 months. We would like Gabe to be able to sit and play on his own while reaching for things and putting them in his mouth. We would like him to continue to cue and communicate. We would also like him to be able to eat some by mouth. They thought these were all achievalbe. Today we went to surgery follow up for the Gtube. Gabe got a Gtube button. yay! This means no more tube hanging from his belly. The little button is easily hidden with clothes. He can bathe and swim in it and it's hard for him to play (tug) with. I also had the surgeon look at his heart surgery scar. We've been doing dressing changes on the area b/c of the inflamed sutures. Even though the picture makes it look red, it actually looks really good and is scabbing over and he said we could stop doing dressing changes on it and just use soap and water. Gabe has been very cute and smiley. I can tell when he looks at us talking to him he is focusing so hard and learning from us.

pics of the week

2009-11-16T17:34:00.001-08:00

Doing well

2009-11-11T17:42:00.000-08:00

Other than being a little gassy with feedings, Gabe is doing well. He has started waking up hungry more in the middle of the night, but I think it's b/c we're playing with the dose/rate/and concentration of his formula and it throws his schedule off. He still doesn't like to take solid naps, but he does go to bed pretty well around 8 or 8:30. He has been very cute lately and has given us lots of smiles today. We went to the Cardiologist today and they said his heart is doing so well we don't need to go back for 6 months. He will be coming off Lasix over the course of the next 2 weeks. They typically continue Captopril for alittle while after surgery to give his mitral valve some time to relax without pressure against it so it doesn't get leaky. After the Cardiology appointment in May, we will go back in October assuming all is well. At this 1 year visit, they will do another Echo and if things still look good, take him off the Captopril and just follow him yearly. They were so happy with his color and how easily he was breathing since the heart shunting blood to his lungs is now gone. He's such a chunk! You should see the fat roles. He's gained a half a pound in a week, so we are cutting down the fortified formula from 30 cal to 24 cal and eventually 20 cal (normal strength). Next week we go to Pulmonary clinic to discuss his apnea and Surgery clinic to discuss his Gtube and feeds and see if he'll qualify for a gtube button even though he's so gassy. I've gotten feeds down to 40 minutes through the pump. He just has weird fussy episodes about once a day when he's gassy. Hopefully fortifying the formula less will make him more comfortable so we can get the button. He's discovered his Gtube and I'm afraid with the one we have now with the longer tubing, he'll pull it out or hurt himself. First Steps will start coming routinely to offer Early Intervention next week and we have a feeding eval set up at the Thomas Center for Down Syndrome the day before Thanksgiving. Hopefully Gabe will get something in his mouth for turkey day...even if it is Alimentum. I finally got the Panasonic HD Writer for my video camera but I have yet to figure out how to post video. There are so many cute clips since Gabe has been born. It's hard to look back and see how sick he was. He was working so hard to breathe. Here is at least a picture from today and the weekend.

Let the early intervention begin

2009-11-05T17:43:00.000-08:00

It has been a busy week. Gabe is finally on a night schedule. We are fortifying his formula to 30cal which has allowed us to skip the overnight feed. Gabe slept 9 hours straight last night...it was amazing. If he wasn't wearing his pulse oximeter overnight I probably would have been running in his room every hour to make sure he was breathing. We are working on naps during the day. Gabe was originally taking about four 30 minute naps a day. I have started rocking and holding him during his 10am and 2pm feeds. This usually puts him to sleep, so hopefully that will get him on a little bit of a nap schedule. First steps came to the house on Monday. Gabe will start with a Developmental Coordinator who will help with cognitive milestones and an Occupational Therapist who will help with facial muscles, feedings, and reaching for objects. We went to the Thomas Center for Down Syndrome on Tuesday and met with Dr.Summar. I like her alot. She answered all my questions and was familiar with his history. She told me that Gabe was the youngest baby she'd ever seen with obstructive sleep apnea and he supported her research hopes that all infants with Down Syndrome undergo a sleep study by 6 mo of age. She also commented that Gabe has a very high arch in his mouth and wants him to meet with a feeding team before putting anything of substance in his mouth to make sure he is safe. I agreed since he gags alot and I don't want any formula going in his lungs. Problem is, the earliest appt. with the feeding person in Dec.1st. They will be calling me if there are any cancellations to get in sooner. It sounds like feeding might be a slow process, so we'll probably have the Gtube for awhile...at least as back up if he doesn't meet his caloric requirement with formula, rice cereal or baby food. We saw the Pediatrician today and she was thrilled with how Gabe looked. On the Down Syndrome growth chart, he is 50-60th% for height, 60th% for weight, and 50th% for head circumfrance. She hadn't seen him in awhile and was so happy that his breathing was less labored and he's no longer pale. We can't get immunizations till 8 weeks after heart surgery, but she assured me that we would catch him up eventually. All of the practitioners agreed that Gabe is cognitively doing well with tracking, responding to faces, colors, lights, etc. He has quite the personality and is starting to "fake" cry if he hears my voice and just wants to be held. The muscle tone in his legs is pretty good. He does have to work on his upper body strength. Open heart surgery and laying in a hospital bed for 2 months took a toll on his shoulder and neck muscles. He has a baby gym that he loves. Laying him on his back and expecting him to swat at objects is too much for him right now...kinda like expecting him to do a pushup...so, we are proping him up on an angle so he just has to reach forward to touch the objects. We are also rolling up towel and laying him over it for tummy time. This roll allows him to have alittle more chest support. We are also holding him with his back against our chest facing outwards. This will allow him to find his head balance and he enjoys the stimulation. Gabe is really into faces right now so we are also making lots of expressions when we interact with him. These activities have been helpful and I'm already seeing improvements.

The following video is a promotional add for CCHMC. Gabe is briefly on the video at 48 second and 1:30. He's famous!

Trick or Treat

2009-11-01T13:35:00.001-08:00

Little monkey

Home sweet home

2009-10-30T17:16:00.000-07:00

The past couple days have been exhausting. We're trying to get a routine in place to get Gabe on as normal a schedule as possible. I think he was in shock the first day home and didn't sleep much. He did take a long nap today. He just fell asleep as Justin was reading to him (I think Justin likes storytime more than Gabe). The problem is, he wakes up as soon as we place him in his crib. He wants us to hold him or at least be near him all the time or he throws a fit. I think he was spoiled a little bit in the hospital...how could he not be spoiled?...we are paying the price now. We are giving him feeds through his Gtube over an hour 6 times a day. That means overnight, we start the feed at 11pm, end at 12am, start at 2am, end at 3am, start at 6am, end at 7am. Waking up 5 times per night to operate this pump has been difficult. I'm going to try to cut out the 2am feed and add the volume to the other feeds and see how he tolerates it. We'll work on condensing the feeds to bolus over gravity in a couple weeks. We also have to change Gabe's dressing on his chest twice a day. He had a suture that became inflammed and scabbed. They removed the scab at the hospital so he wouldn't get a skin infection. We have to clean it with soap and water, put some wet gauze in the area along with ointment, and a dressing over that. He screams during the dressing changes. We offer him a pacifier when he feeds and dip the pacifier in formula to get him use the idea of sucking when getting full. We try syringing tiny amounts of formula into a nipple. The most he has ever taking with this is 7ml. He gags alot. With poor muscle tone and reflux, feeding from a bottle is difficult. Often times babies like Gabe go from tube feed to baby food or sippy cup. We'll be trying a little rice cereal in the coming weeks. We are also doing exercises to help strengthen neck muscles and reaching for objects. Talk about a full time job. The exhaustion is totally worth it....so happy to be home. I'm excited for Halloween tomorrow. Stay tuned for pictures.

Discharged!

2009-10-27T18:08:00.000-07:00

57 days after being admitted, Gabe is discharged with the diagnosis: status post repaired AVSD, reflux resolved with Gtube feeds/nissen, subglottic stenosis, and sleep apnea. His heart is fixed and we just have tube feeds, oxygen at night and Prevacid, Lasix and Captopril. I couldn't be happier. I feel like Gabe was born today in a way. It's so nice to have him at home without having open heart surgery looming over us. I am so thankful. Thank you for everyone who sent cards, made us food, gave us gift cards, etc. We couldn't have made it through this without you. Thank you also for everyone who walked and/or donated to Team Cash's Buddy Walk earlier this month. Gabe's team raised over $11,000 and ranked third in donations for the Cincinnati Tristate area. And a huge thank you to Kelly and Ryan Shrout: Kelly organized the Buddy Walk and stayed with Gabe during her downtime as a nurse on his unit, and Ryan helped organize the Buddy Walk and donated some of his personal belongings to a raffle in Gabe's name. Gabe will definitely be at the Buddy Walk next year. Many have asked how we have gotten through this and the answer really is...because we had to...there was no other option.

Here are some things that made it easier:

1. Grandma's...they are wonderful and allowed Justin and I to have breaks from the hospital guilt free.

2. Coworkers...I work with great people and have a wonderful manager who allowed me to have an extended maternity leave to be with Gabe. Not all jobs would have been as understanding. They wear bracelets that say "Gabe" on them to show there support. They are all a great people.

3. Hollistic Health...they came by the room and gave us massages...enough said

4. Blogging....This blog has been therapeutic. I originally started it as a way to keep in touch with family and friends regarding Gabe's medical status so I wouldn't have to repeat the same story over and over. Turns out I've met a great network of other Down Syndrome mothers who have "been there, done that" and know exactly what it is like. It was so helpful looking at pictures of their children during their surgery and recovery and comparing it to the super cute pictures of their kids now.

Things I've learned:

1. Advocate for your child. Even if they do end up talking about you in psychosocial rounds b/c you are so upset about the wrong ET tube being placed in your child, you have the right to let your strong voice be heard and not back down.

2. Tell the doctors, RN's and therapists who are extra good with you and your baby that they do a great job. Nothing like positive reinforcement to lift someone's spirits.

3. Never complain about the cost of insurance...we'd be bankrupt without it.

4. You know your child best. Speak up when something isn't right.

5. Talk to other families. Realize that you do not have the sickest kid in the hospital. Remember how lucky you are to have a happy child who is getting healthier by the day.

6. The biggest and most important thing I've learned through all this is: DON'T EVER GIVE UP ON GABE!

When Justin was 19, he went to France with a class from St. Henry. While he was there, he bought 2 bottles of wine: 1 for when he got married and 1 for when he had his first child. The marriage wine has been gone for 2 years now. With me nursing in the beginning and then Gabe being sick, we never got around to drinking the baby wine. We are each having a glass right now and it is wonderful.

Homeword Bound

2009-10-27T10:27:00.000-07:00

They reviewed Gabe's sleep study and he still has severe apnea. However, he was able to keep his oxygen saturations in good range with just 1/8L of oxygen. The best treatment for his airway obstruction is CPAP. Unfortunately, the mask is too big for him and covers his eyes. So, in the interim, he will be using oxygen and then switching to CPAP when it fits him better. The oxygen will treat the oxygen desats and keep him in the 90's, however, it will not treat the apneic events themselves. This disruption in sleep may lead to neurological delays and behavior issues over time. The good news is, we know he has it and pulmonary will follow him close and get him in a CPAP mask as soon as possible. Often times with Trisomy 21 babies, it goes untreated for a long time b/c you don't even know they have it. I guess Gabe is lucky in a way to have had monitors on him for the past 2 months to detect it this early. So, with that being said, there is no reason we need to stay at the hospital...that's right...we're going home today! There's still a ton of discharge stuff and home health stuff to set up, but I'm getting excited. I actually believe them this time...we're going home!

ZZZZZZZZZZZZZZZZZZZZZZZ

2009-10-26T08:45:00.000-07:00

Gabe failed his sleep study again Saturday night. He was so fussy and couldn't get comfortable. He barely slept. They detected that he had 10-15 apnic episodes per hour. Even though this is improved from last month (before the GTube and heart surgery, he was having 27 apnic episodes per hour), it's still considered moderate to severe apnea. Cardiology spoke with Pulmonary today explaining how great clinically he was looking and that he's been off oxygen since Thursday night and doing well. Pulmonary said they were going to review his sleep study again slide by slide and see what trends are going on and if he got enough hours of sleep to make the study accurate. They're going to come back this afternoon or tomorrow morning to discuss if they need to repeat the study or if they have an intervention they recommend.

"Happy and sad and back again"

2009-10-23T17:12:00.000-07:00

Gabe's scope today showed laryngomalacia to a mild to moderate degree. This means that a flap of tissue flops over the larynx obstructing the airway at times. Everything else looked healed and good. Most babies grow out of laryngomalacia by the age of 2. The next step is to do a sleep study tomorrow night to see how much the laryngomalacia is obstructing, causing apnea and is oxygen enough to treat it. ENT and Pulmonary seemed pretty pleased...they were expecting his airway to look a little worse. Gabe is still off oxygen. They did have to put it on for a couple hours last night, but he's been off all day. He's discovered his facial muscles and makes the funniest expressions...cracks us up! One second he's pouting and the next he's cracking up.

The sun will come out tomorrow

2009-10-22T17:23:00.000-07:00

Gabe is having an MLMB scope tomorrow to figure out what to do with his airway. He will have a sleep study this weekend probably. That will give use more info about how his apnea currently is since he's had the Gtube with Nissen and heart surgery since the previous study. Hopefully we'll be out of here sooner than later. His heart is doing great and he's been off oxygen for an hour and a half now and doing okay. If only we could get the apnea under control. Here are some cute pics from this evening. Gabe has been happy this afternoon.

This is a no trach zone

2009-10-21T17:11:00.000-07:00

Pulmonary came by today and talked about doing a joint scope with ENT on Friday. They mentioned doing another sleep study since Gabe's first study showed such significant apnea. He then mentioned that a trach is still not out of the picture. That was kind of a shock to me considering his oxygen saturations stay in the upper 90's to 100% on 1/8 liter of oxygen and he doesn't desat. We're going to talk to the Pulmonary attending again tomorrow to ask more questions about possiblities such as CPAP nasal prongs or mask. We'll know more after the scope and second sleep study. I was hoping to get out of here this weekend, but now it is definitely going to be next week....if he doesn't need a trach, or it could be longer...sigh.

In happier news, Gabe has been playful and acting more like himself all day. He's so cute and is cooing more and grasping rattles more....so fun. Here are some pics of Gabe playing on Daddy's lap.

Hopefully home next week!

2009-10-21T05:35:00.000-07:00

Gabe's diarrhea is getting alittle better. It's not as much and not as frequent. He no longer has a fever and all his cultures are negative. The best thing is that he's acting more himself. He's alot less fussy and being very cute this morning. His electrolytes and WBC count are all looking much better. They'll restart his Lasix today. They are also going to start windowing him with his feeds and seeing how he does off oxygen (he really likes 1/8 liter). They are also going to talk to Pulmonary to see if they want to do another sleep study before we go since Gabe has pretty significant apnea. He also has another MLMB scope on Friday to make sure his airway is looking okay. We're getting there...the end is in sight. Hopefully next week. I really want to be home for Halloween...Gabe is going to be a monkey.