Snow Day!

Well, we are getting some considerable snow for the first time this winter. I'm still undecided about Connie getting to experience it. For one, his temp runs pretty cold anyway (not usually any higher than 95 or 96 degrees) and I'm afraid he'd get too cold out there. The other is that we don't have proper snow apparel for him and I don't want him wet. If we get brave enough, we may dress them all and get him out there with the girls just long enough for a pic. Honestly, the thought of staying in our pajamas and watching movies and playing downstairs sounds much better to Mom! We do have to venture out at some point today. Greg went to the grocery store last night late (along with the rest of the town!) but I forgot to pick up two prescriptions for Connie before Walgreens closed. They say there's supposed to be a break in the snow later today so we'll try then. Have fun and be safe!

Swallow Study Results

Well, Dr. Brady hasn't reviewed the results yet, but Renee, the speech path, went over the test with me after it was over. I'll get to that in a second. First I'll tell you what happened. We got there with our little "bag of tricks" and sat him in a chair up high off the floor. The x-ray table was flipped upright and was on his right and on his left was the x-ray machine. Renee handed me various things to try to get him to eat/drink. We started with a sippy cup which he readily opened wide for (to my surprise). He allowed it in his mouth and seemed happy about it until I squeezed a little bit of barium mixed with apple juice in his mouth. You should have seen the face! We tried giving him the barium mixed in all sorts of things including purees and milk. We tried it with a spoon, syringe, cup, etc. He preferred the syringe, but only tolerated it a couple of times. We were able to get seven good swallows, enough for the test! I was so proud that we were even able to do it. I thought he'd be tight lipped the whole time and not take anything. He didn't cough and gag and go crazy either. It was so good. 45 minutes was his max and we decided we got enough at that point. It only took three people and 45 minutes for 7 swallows, but it was worth it! The test showed that he is NOT aspirating (swallowing the food/liquid into his airway). Based on this, it is safe for him to eat. We are allowed to advance with feeding and drinking during therapy and when we work with him at home. What it doesn't tell us is why he doesn't want to eat or swallow. We don't know if it is a behavioral, learned thing, if it is related to reflux (she mentioned secondary aspiration as a possiblility) or what it could be. We've ruled out aspirating though so hopefully once Dr. Brady gets the info she will get with us on the next step, whether it be more studies or what. Basically, it was the best news we could hope for. If he was aspirating, I don't know what we would have done, but I know what we couldn't do and that is try to put food/drink in his mouth! My mom said tonight that she just had this funny feeling that came over her that today was the beginning of healing for him (as far as the vomiting goes). Boy, I hope she's right!

Conway Can. . .

I got to thinking tonight about how easy it is to focus on all that is wrong with Connie, what Connie can't do, doesn't do yet but should, won't do or shouldn't do. So that got me thinking about what all he can do. Here are just a few things that come to mind:

Smile, laugh, melt your heart by cocking his head to the side and rolling his eyes up at you, splash his sister in the bathtub, drop his cookie on purpose to watch mom and dad repeatedly pick it back up for him, find the trunk (by himself) on his "blue bunny elephant" lovey and chew on it until he falls to sleep on his own, find a way to roll completely off the blanket he was laying on before throwing up, show his affection for toys, pets and people by banging on them, chew on his toes, chew on his upper lip making this cute, underbite look on his face, become completely enamored by music on the Today Show's Concert Series, grab your nose/face/beard/glasses with gusto, mimic a fake laugh, wait patiently for feeding/changing/cleaning while Mommy takes MK to the bathroom all day long for potty training, make getting up in the middle of the night to clean up puke a rewarding experience, reach for us when he wants to be held, rub the top of his head, cover his face with cloth diapers and blankets when sleeping (just like Daddy), get excited when he sees Sissy or when visitors/therapists come over, reach out to try to pet the dog, knock ornaments off the tree with his feet, talk/sing himself to sleep, mimic facial movements while watching us eat (just as a cruel joke--he's leading us on!), recognize extended family members, poke you in the eye with his thumb and show no remorse, calm down (some call it "recover quickly") after getting upset or sick, watch you when you aren't looking, intensely study the tag on a blanket, doesn't get scared when you place a dancing, singing FrankenPig on his chest, help put his arms through the sleeve of a shirt now, bite your finger hard enough until you scream in pain, bang on the back of his other hand when he gets bored and can't reach a toy, kick the wipes container off the changing table, give cues as to when he's going to be sick so that we can prepare, thus having an easier clean-up. . .

Well, that's a start at least. Greg and I hope that this list helps you to see a little glimpse into his personality and how much joy he has brought to our home and family.

It's been a while. . .

I thought I posted an update last night but I may have forgotten to "publish post". Basically I was just writing to tell everyone that even though Friday and Saturday had considerable vomiting, both Sunday and today he only threw up about 1/2 of his first feed of the day and kept everything else the rest of the day and overnight down. I hesitate to post this wonderful news because as Murphy's Law would have it, every time I do, within minutes he pukes up his tube and all! Knock on some wood tonight that he'll stay asleep and that this trend of proving me wrong will end.

Speaking of sleep, he's developing some bad habits. He's going down around 7 or so and then waking up at 9 or 10pm and wanting to be up for an hour or so. Then he sleeps in so late in the morning. This needs to stop because Mommy needs her time in the evenings and because he has PT early on Friday mornings so he can't sleep in! Today he slept until 9:30! He ended up only taking one nap but it was about 4 hours long. Weird. Just when you get them figured out they change! I've been letting him sleep instead of feeding him his first feed at 7 while he's asleep. It wakes him up since it makes him vomit. I figured he's been doing better (less vomiting) if he's up for a few minutes and can get some good coughs before the feed starts. He seems to only throw up the first half as opposed to the whole thing if I feed him before/just when he wakes. Then only problem with waiting till he's up is that it's hard to get in 4 feeds before having to turn the pump on continuous at 10pm. I want him to get enough ML's throughout the day and to do so he needs to get that first feed early enough. Today I let him sleep but spaced the feeds every three to three and a half hours and I was able to get in four feeds and still give him a break for an hour before turning it on for the night. I'm sure this makes little sense and I apologize for boring you, but it's related to Connie so there you go. This website is all things Connie afterall!

There are a couple of new pics on the right side of the page. Enjoy!

Letter to Connie's OT

Tonight while in the bath, Connie played more than ever. Splashing and laughing and guess what else? He desperately grabbed at the cup we use to rinse his hair and drank out of it. That's right, he won't eat or drink anything nourishing, but he'll drink bathwater! I told Greg and he laughed and joked that he didn't care if he drank gasoline. It was still progress. I saw two really good swallows and that was after he accidentally got a mouthful and coughed a lot--he still wanted more. I got some of those wagon wheel finger foods and he's been playing with those and the puffs but his favorite is a strawberry nutrigrain bar that he gets all gooey and stuck to his fingers and then mouths all during mealtimes. Tonight he had some cheerios that stuck but I don't think he actually got those into his mouth. The motor control is difficult for him but I don't dare try to do it for him. He doesn't even want to take it out of my hand if he drops it (seems scared) and he wants to find it himself again. I'm tempted to get some milk the next time he takes a bath and see if he'll drink it out of the same cup. Can you believe he will drink the bathwater? He has been making hungry noises with his mouth more today. I'm sure it is because he has barely thrown up. He threw up a small amount after his 7am feeding, a medium amount after his 11am feeding and nothing since (it's now 9pm and two feedings later).


Anyway, I just wanted to pass on the good news and couldn't wait until next Tuesday! I was going to give you trouble and tell you that in the "race" between you and Deb, she was winning because he is making remarkable progress physically. Apparently, though, he likes you and wants to impress you and didn't want me to tell you that and hurt your feelings!


Erin Beckemeier

Update on Mary Kathleen

Dr. Sanchez says that it is possible that the hair follicles are just irritated. She did say that the bumps do resemble warts but since she has no other warts anywhere, that's not as likely. We are going to treat it for now with some medicated shampoo a couple of times per week and daily application of a topical ointment. If it goes away we can stop the treatment. If it is still there in two months they will do a biopsy :( If it changes more before then we will go back in. So, we are rejoicing for now that she doesn't think it is cancer or anything at this time!!

I hesitated to update on Connie yesterday because I was afraid I would jinx it. He went from Sunday afternoon until the early morning hours on Tuesday with NO THROWING UP! Of course he's thrown up four times today, but compared to last week today was even fabulous! I know it is because of everyone's prayers. Please keep them coming.

He got three shots today and had his checkup. Dr. Davis was pretty pleased. We like going there because everyone thinks he looks so big and so great. They aren't analyzing every ounce! He was 30 inches (90th percentile), 21 lbs. even (just over the 50th percentile) and 45.5 for head circumference (50th percentile). On his check out sheet he wrote for the diagnoses: Healthy, Heart Disease, GERD, Developmental Delay. It was hard to see the last diagnosis in writing. I know there is a reason for it and it won't be forever, but it was still kind of humbling.

Greg had a fabulous idea tonight. Lately Connie has been going to bed by seven at the latest but is waking up around 9 and wanting not going right back to sleep. To get him back to sleep on his own we've been putting the vibrator they gave us at the hospital in bed with him and it is enough to lull him to sleep. It goes through two batteries a night and sometimes doesn't even last the whole night. So, Greg got a chair massager that we had lying around the house and plugged it in and put it under the mattress. Now the whole bed vibrates and it's not eating batteries! Isn't he a genius?

Tomorrow he'll get weighed by the home health nurse so I'm anxious to see on the same scale we usually use how he compares.

Okay, Redirect for a minute

I know this website is titled, Care 4 Conway, but his sister, Mary Kathleen (aka Mookie), needs a couple of prayers said for her too. That pesky birthmark that they call a congenital nevus is changing. We had that scare this past summer about it when they held a dermatology conference to get all those second opinions on it. At that time it was decided that the risk to biopsy the mole at this time (and putting her under general anesthesia) would be greater than the risk of the mole being cancerous. We were told to watch it and come back in a year if nothing changed, to call before then if something did. Well, it's changing. It's not growing larger (I don't think anyway) but it is getting these raised bumps on it. One is larger and looks like a wart. The others are tiny little bumps under the skin to the left of the big bump. It was always smooth before and not raised. So, I called and we are going in tomorrow afternoon to the dermatologist. We are praying that some type of scan can be done before any invasive testing/biopsy/surgery is required. I'll update after we hear something. Thanks for the additional prayers. Geesh, I feel like a prayer hog.

This Week In Review-Looking Ahead

Well, for the past week or so, we've seen quite an increase in vomiting. For awhile he vomited the morning feeds but held down the afternoon/evening/overnight feeds. Then he started only holding down feeds while he was asleep and now he even wakes during a feed and throws up or throws up three hours later when the food ought to be digested. He has lost some more weight, down from 20 lbs. 15 oz to 20 lbs. 8 oz. He's not dehydrated so far, but the poor kid is hungry before his next feeding is due and I guess that's because he's thrown up everything in his tummy. Early in the week we talked to the doctor who said she'd try to move up the swallow study. Then we talked to the OT at Child Development and told her how we've gone backwards in his tolerance of oral stimulation. She said that we'd be lucky if he was even able to get the study done on the 13th at this rate.

He has thrown up his tube several times and we gave going tubeless a good, honest effort. We gave him time and lots of textures and modes of feeding and he was unwilling to attempt any of them. It was obvious to us that, as much as we'd like him to be, he's just not ready to "just take the tube away and when he gets hungry enough he'll eat."

We've not gotten much practice in with oral stim this week because he's been so miserable with all the vomiting. Each time it's a whole process to change him, wash him down and get him dressed again, only to have him puke all over the clean set up once we finish! He's basically been sitting in the high chair while we eat and playing with food. We put food, utensils and water or juice in a sippy or bottle on his tray and let him experiment but he doesn't usually do much. When he does we make a big deal out of it. His pincer grasp is coming along nicely though! This is progress.

When the PT came this Friday (her second visit so far) she remarked that he already is getting stronger. Noticeable improvement in only a week is fabulous! When he's sitting, he's pretty good about going to the sides and forward but he has a hard time coming back up once he starts falling backward. His abs are starting to strengthen enough to where he's beginning to self-correct when this happens. We are very proud. He loved bouncing on the therapy ball.

This upcoming week is another busy one for him. He goes to the pediatrician for a 9 month (yes, he's 9 mos. already!) well baby checkup and vaccinations on Tuesday. Then he has OT at 11:30 on Tues. and PT on Friday at 8am.

He is so happy other than when he is throwing up. Please continue to storm heaven with your prayers for God to heal him fully--both his heart and his tummy.

Renewed Hope!

First, there are a couple of new pics to the right. I report tonight some good news and a renewed sense of hope. I was doing "homework" with him and he took some watered down baby food through a syringe. When I say some, I mean about a total of 6-8 mL. He had some great swallows and with a thicker but not too thick substance, he didn't drool out so much. He didn't gag once! Then for his feeding I gave him the rest of the thinned baby food through his tube because I've heard that some kid's reflux gets better when they have some more solid food on their tummy to weigh it all down. Granted, it wasn't true solids because it had to be thin enough for the tube, but it was thicker than the normal milk he gets so that's good. Then I used some rice cereal to thicken his milk and put that through the NG also. He gagged a couple of times but nothing came up!! I'm so excited. I didn't use the pump, because I was afraid it would clog, so it was pretty time consuming to give him syringe-ful after syringe-ful over about 30 minutes--but it was worth it if it helps him keep it down. If he does well again at his next feeding I will call the doctor tomorrow and see if his feeds need to be adjusted because of adding solids. Just pray that he digests it fine.

Small Miracles

Sometimes in the midst of the daily grind, it is easy to overlook the everyday miracles. At least for me it is. Yesterday we got good news and bad news. One prayer answered and another one that God's timing just isn't ready to take care of yet. Dr. Tychsen's office called and said that Connie's eye testing last week showed his eyes are working "pretty well together" and he doesn't want to do anything further at this time. This is fabulous news. God has spared Conway's sight and we are so thankful. When we go back in May they will hopefully be able to do some additional diagnostic testing. They mentioned measuring the muscles or something like that. The older the child gets, the more they are able to tell. We still are asking for prayers that he will not require glasses at that time.

Dr. Brady called back. She said that if Connie were to get the surgical G-Tube that his pacemaker will have to be moved to the other side--yikes! So much for a 24 hour hospital stay on that one. She is going to talk to Child Development to see if we can't move up the Swallow Study since he is going backward and getting more averse to oral stimulation. Once we find out if it is safe for him to eat, we may try to pull the tube completely and see how he does. The downside is that we only get 24 hours to give him a trial run. If he doesn't eat enough, we'd have to put the tube back in. I asked about the super high calorie fortifier and she said, "No". She said that with the meds he is on he needs more "free water" and that 4.5 oz of liquid wouldn't be enough. Doubtful he'd be able to drink 20-30+ oz in a day. Right now he can't even swallow 1/15 of an ounce. She did say that we could let him go without the tube all day and then drop the tube every night and give him most of his calories overnight. We are continuing to pray for a miracle that he will be able take enough orally during the swallow study and continue to improve dramatically so as to actually be nourished by what he takes orally.

Praying for a Miracle

Since the middle of last week, Connie seems to be throwing up more. Basically every time he is due for a feeding and he's not sleeping, he throws up and now he's even waking up to throw up some of them. I put a call into the GI doctor but haven't heard anything back yet.

The dietician from First Steps came out today and we discussed this recent development and I shared my concern that he seems to be going backwards a bit as far as the oral aversion is concerned. He is less interested in doing oral practice and is back to shaking his head "no" most of the time I offer. Child Development warned that he may be getting to the point where he will associate even sitting in the high chair with throwing up and gagging and not want to be there. Long story short, I'm going to ask the doctor if there is a point where we can pull the NG out and try to get him to take something orally. The problem is that it is unlikely he will take enough to sustain him, let alone make him grow. There are products to thicken liquids (for those with swallowing disorders) and those that add a large amount of calories. One such product contains 330 calories in just 1.5 oz. of liquid. If we could just get him to drink about 3 a day (a total of 4.5 oz.) we'd be great. Then there's still the problem of getting him to take his meds orally. Who knows. I just know that I'd like to avoid the G-tube surgery at all cost but he needs to lose this NG tube ASAP. The fact that he's puking before a feeding is even all the way in (sometimes before it is even 1/2 way in) leads us to believe it is not an intolerance problem but a gagging one. All this blabber leads me to what I really wanted to post about. Tonight at our parish mission, the visiting priest passed out prayer cards with the Vincentian Mission Prayer written by St. John Gabriel Perboyre, C.M. He told about how so many miracles have been reported from those who prayed this prayer daily. Greg and I are going to start praying this prayer daily for healing for Conway that he will stop this vomiting and relearn to eat. We would like those that are so inclined to do the same. The best part of the prayer is that nowhere in it does it ask for a miracle. I think you'll love it. Here goes:
Divine Savior, transform me into Yourself.
May my hands be Your hands.
May my tongue be Your tongue.
Grant that every faculty of my body
may serve only to glorify You.
Above all, transform my soul
and all its powers,
that my memory, my will and
my affections, may be the memory,
the will and the affections of You.
I pray You to destroy in me,
all that is not of You.
Grant that I may live but in You,
and by You, and for You,
and that I may truly say with St. Paul,
"I live now, not I, but Christ lives in me."

Thanksgiving

Conway's big, post-surgery debut was on Thanksgiving. It was basically the first time out other than to doctors appts. We packed lots of clothes and washcloths and two pies and headed out the door around 1pm. We got home a little before 9pm. He threw up all but one of the feedings he had while we were gone (frown). The worst was in the car on the way home. That time he threw up the tube out his mouth so we had to pull it out the rest of the way and get the tape off. Tearing the tape off is the most painful for him and at home we soak the tape in water to get it off easier. Couldn't do that in the middle of the backseat so we just pulled it quickly and applied pressure afterward. He soaked his outfit and carseat! He enjoyed seeing everyone and watching the commotion of it all.

His vomiting seems to be increasing again. It is almost like unless he is asleep and still the whole time he's fed and afterward he will throw up and throw up a lot. With him eating every three hours it is hard to do his therapies and practice and not have it induce vomiting. I have to try to do his oral practice at a time where he hasn't been fed within the last hour or so and isn't being fed because he usually gags during it. Same with physical therapy work. It's hard to do tummy time or any other movements of any kind anytime close to a feeding because he throws up. That would all be fine except that then you have to take into account the fact that he takes two long naps every day. So finding a time when he's awake and not hungry but not full is hard. I may try calling the doctor Monday to see if we can give him 150mL every 4 hours or so and that way he still gets the same total amount each day, just an ounce more at each feeding, but less feedings (probably doesn't make sense how I'm explaining it--I'm tired and it's late!). We'll see what she says, but at least that would give us more of a window to work with him at a "not-so-volatile" time.

Happy Thanksgiving!

Psalm 100

Make a joyful noise to the Lord, all the lands!
Serve the Lord with gladness! Come into God's presence with singing!
Know that the Lord is God! It is he that made us, and we are his;
we are his people, and the sheep of his pasture.
Enter his gates with thanksgiving, and his courts with praise!
Give thanks to him, bless his name!
For the Lord is good;
his steadfast love endures for ever,
and his faithfulness to all generations.

Eye Testing Over

Connie had the "spatial sweep" test done today. He looked at outlines of several objects and tracked the objects up and down. The outlines got gradually thinner. Then he went into a dark room and right before the next test began he threw up his entire feeding. Carpet and all! In that room he looked at a screen as the administrator held little characters up to keep his focus. The screen had stripes that got progressively smaller. He wore little electrodes on his scalp during this test. It took less time than we anticipated because he was able to stay focused and look for as long as she wanted him to. He didn't keep pulling off the electrodes or eye patches. Basically, he was rewarded for his cooperativeness by getting out of there early! The trip wasn't without excitement though. On the way home, a car that was about four cars ahead of us spun out on the on ramp causing everyone to slam on their brakes. That landed us half in the ditch. Luckily, we were able to back right out and no one was injured and no property damaged! That's even one more thing to be thankful for this holiday.

The Latest on the Oral Motor Front

We got back from Child Development where Connie once again showed off his progressing oral motor skills. He was able to take about 15ml of cold, apple juice flavored water from the syringe with a preemie nipple on the end. He never sucked the nipple, but would chew it a bit. He swallowed well and didn't keep it all in the back of his throat. Toward the end of 15 minutes, he had a big cough but was able to cough and didn't throw up. We moved on to some applesauce mixed in baby cereal. We just dipped the spoon in the cereal and rubbed it on his lips. He wanted to be the one to move it into his mouth. He did a couple of swallows and was receptive to the texture, but tired of the whole process so we stopped. We have an appointment to do the "swallow study" at St. John's on December 13. They will have him swallow some barium and take an x-ray to see where it's going to make sure he is not aspirating it. That is really the next step before we can move forward with increasing the feedings. At that time, we will know if it will be a matter of weeks or months before he is able to tolerate taking more food. If it looks like it will be months, the g-tube talks will resume, meaning that will likely be the course of action. If it looks like he may be eating a good deal orally by mid-January maybe, then we will just leave the NG tube.

Back from the Eye Doctor

Well, we left for Children's a little after 9am and once again didn't return until several hours later. We spent a whole 4 minutes with the opthamologist but the trip was over four hours! Connie and Mary Kathleen were great though. First we waited and waited to see him and when they finally called us back at 10:55 for a 10:10 appt. I was disappointed when it wasn't even a real MD or our doctor that saw us. He asked some questions and did some tests getting Connie to track toys and then he put drops in his eyes to dilate them and told us to go walk around and come back in 25 minutes. We did but they didn't see us 25 minutes later. We waited about an hour and 25 minutes and then got to see the doctor. He told us we have "great reason to celebrate" and that we "dodged a bullet" with Connie's seizure and that he has one more test he'd like to do to make sure, but he thinks Conway's eyes are not permanently damaged from the seizure/surgery. He said the only concern he has now is that Connie is "excessively farsighted for his age", meaning he works very hard to see things close up and that he wants to follow this. We see him again for a follow-up appt in mid May so he'll determine then if he needs glasses. I sure hope not. He did say that this was not related whatsoever to the cardiac condition, that it just runs in families. I am shocked because neither Greg nor I wear glasses. He seemed a little surprised that our other kids don't wear them given how farsighted Connie seems to be. Kinda makes me want to take them all in to be checked.
Bottom line is that it was a great day. Another reminder of all we have to be thankful for. We go back Wednesday for the big hour and forty five minute test that will give him an even better insight into whether or not there is anything wrong.
OT comes at 4:30 today and tomorrow is an appt. with Child Development speech path and OT to work on Oral Motor Skills at 11. Thanks for looking in.

Murphy's Law

I should know better. Just as soon as I post that things have gotten better in the GI department, they get worse. He had a horrible night and was up until after 3am with reflux pain (I guess). He finally threw up a medium sized (we label it small, medium or big) amount and went to sleep. He slept pretty well until after 9am. This is unusual for him as he is normally up around 6 or 6:30. He threw up so much this morning that he clogged his tube with throw up and phlegm and we had to put in a new tube.

We have a busy week ahead with appointments. He's going to the opthamalogist tomorrow down at Children's and the OT comes tomorrow afternoon. Tuesday he has PT and the dietician is coming. I'm not sure yet when the home health nurse is coming. After the Thanksgiving holiday he'll start having OT on Tuesdays at 11:30 and PT on Fridays at 8am.

Much Improved

The vomiting has decreased significantly since Thursday evening. He did super well holding down his bolus feeds yesterday and only had a tiny amount of spit (more like phlegmy drool) that came up with each one. He woke up just before he was to go on the pump last night but we're not sure if it was reflux or if he was just hungry. He seemed fine once Mommy picked him up. He slept all night long and woke up around 6:00 am. He had his morning vomit (which was actually smaller than it had been the last several days) and spent the morning playing with his sisters and then went down for a nap. He got his 10am bolus feed and held it down and is still sleeping.

Have a great weekend!

Back on the Pump

Talked to Dr. Brady this afternoon and we came to the conclusion that maybe going straight to 7 bolus feeds from 3 may have been too fast of a change for Connie. He's back to normal wetting and stooling and has kept down his 10am and 1pm bolus feeds minus a little, tiny, phlegmy spit. The new plan is to give him bolus feeds at 10a, 1p, 4p and 7p and then turn the pump on continuous at 10pm until 6am. I did the calculations again and it seems that he went from 1140 mL per day down to 700 mL per day for intake when we switched him over. That is considerable and when the vomiting increased, it's no wonder why he lost weight. Now he'll be getting 960 mL per day. Hopefully he handles it well.

Connie was receptive to some new oral motor stimulation today. Yesterday he loved getting very diluted apple juice mixed with ice water via syringe. He sucked the syringe as I slowly emptied it into his mouth. He was heard swallowing and didn't cough or choke or gag at all (until the end when he spit it all up). He did this for a good 20 minutes. Today he did the same with some pear juice in the ice water and wasn't quite as crazy about the flavor. I filled a medicine dispensing pacifier with the juice mixture and dipped it into the juice and offered it to him. He sucked a little (just the tip--didn't put it all the way in his mouth), but was very eager to do it himself--which he couldn't. I then poured some of the juice mixture into a take and toss sippy cup and gave him some sips. He took four sips/swallows and then lost interest. Tomorrow I'm going to try it with the apple and see if he likes that better. It's amazing ! By this time next week he may be drinking more like 1/2 ounce or so from the cup. We'll see.

Still Waiting

We've called the GI doctor back this morning but haven't heard back from her yet. He received 60mL/hour for 11 hours overnight. He fell asleep about 7pm and didn't wake up until 3:30 with a wet diaper. He went back to sleep until 6:30. Then he woke up wet and very nauseous. He threw up three big times. It came out his nose and everything. Then he took a cat nap after all that work! The pump was turned off at 7:30 and he got a bolus feed at 10am and only threw up a small amount. He just went down for his nap. Will update when we hear back from the doctor.

Good News/Bad News

First, the good news. Well, great news, actually. All of you wonderful friends and family spent a total of $2730 on food last night at Chevy's. That means that they donated 15%, or $410.06, from those proceeds to Conway's fund. Thanks again for the super turnout!

The not-so-good news is that Conway is leaning toward the dehydrated side of things. His eyes are looking a bit more sunken, he hadn't had any bm's for almost 48 hours and his wet diaper output had backed off considerably. Combined with the vomiting, weight loss and sunken in soft spot, the GI doctor decided that he needed to be put back on continuous feeding overnight. We're pretty bummed, since this is a move in the backward direction, but we don't want him hospitalized for IV fluids! She told us to give him a glycerin suppository, put him back on the pump overnight and call her back in the morning to tell her how he's doing. He's already pooped twice since the suppository was given about an hour ago! I'm wondering if he was throwing up everything because he wasn't digesting well and was like a baby that eats too much and spits up. Maybe all that food not moving created an environment where he couldn't hold more volume down. The thing that makes me think it's not that though is that before he was fed each time we check for tube placement and when we pull the air that we put in back out, any milk that wasn't digested would come up and milk wasn't coming up. Usually that means that he's digested the milk, but in his case it's that he's thrown it all up. Anyway, we'll just wait and see what the doctor says in the morning. He's already in bed for the night and now Mary Kathleen found an egg decorating kit and since it has bunnies on the outside she's decided we need to dye eggs tonight. So, Happy Thanksgiving everyone. We'll bring the colored eggs!

THANK YOU!!

Greg and I want to thank everyone who turned out tonight for the Chevy's event! Several people who couldn't make it sent us their love. The staff at Chevy's said they'd never seen a crowd like that for one of their fundraising nights. People who came in said they had trouble finding a parking place and at one point there was a 30 minute wait for a table (and we knew most everyone there!). We lost count somewhere after 130 people! We especially want to thank our dear friend, Carol Stadler, for coming up with the idea and organizing the whole thing. What an amazing blessing to have so much love shown for our family! The best part about it was getting to see so many people who prayed for Connie, the people who cried with us, celebrated with us and continue to keep him at the top of their prayer lists. We know that the baby steps we see every day are the miraculous result of such efforts on your part.
Love,
Greg and Erin

ps. pics to follow. I intended to take a bunch but got so busy gabbing with everyone that I didn't get very many!

Chevy's Flyer

In case you don't have the Chevy's flyer and you plan on dining there tonight, you can download it at:
http://www.rockybox.com/conway/chevys.pdf

We look forward seeing everyone and God bless!

Conway's dad,
Greg

Tonight's the Big Event!

Come celebrate Connie's amazing journey with us tonight at the Chevy's Fresh Mex St. Charles location (you can see it from Hwy 70 near the Zumbehl exit)! A portion of the proceeds will benefit Conway's medical fund to help pay for his RX's, doctor's visit copays and insurance deductibles. One of us will be there the whole time (we'll take turns so that someone can stay home with Connie). We can't wait to see you there!

Brother is still having lots of trouble with the morning feeds. This morning he threw up the entire feeding again. He finally had a bm last night so I know things are finding a way out, it's just that he doesn't keep hardly enough down to leave anything to get rid of.

He and Mary Kathleen were so cute yesterday. Here's a video.

Connie adoring Mary Kathleen

Now Protected From RSV

Conway has been given his November Synagis vaccination to protect against RSV, a dangerous illness that cardiac children are more succeptible to. Since he is so big, he had to get two shots, one in each thigh. Jen, his nurse, said that this shot burns going in. He cried and didn't like it one bit.

He got weighed and his weight has dropped. She was here on 11/1 and his weight was 21 lbs. 2.5 oz. Today it was 20 lbs, 7 oz. She isn't too concerned since he doesn't seem to be throwing up more than before and she said before we get all alarmed we'll see what he weighs next week. I told her that Dr. Brady has adjusted his feeds and he now receives 200 mL less per day with the new schedule.

This morning there was some blood in his vomit. It was bloody mucuous, mostly brown, but a little pink. It was a small amount. I saved the wash cloth and pajamas that it had gotten on and showed the nurse. She said it was probably just some irritation either in his esophagus or his stomach. We are to watch it and call the doctor if it persists or increases.