Yay for Yogurt!

Connie made huge progress in oral intake this week. During his therapy on Tuesday he actually ate at least 3 tbsp. of vanilla yogurt. He wasn't crazy about the blueberry, but loved the vanilla. Later that day he had 3 tbsp of banana yogurt. Yesterday he ate gerber pureed carrots! About 3 tbsp. that time too. He's opening up for the spoon and swallowing. He's still not great about taking it off the spoon. He wants to put it in himself (control issues/fear) and he bites down on the spoon and won't let go for a few seconds. He's also loving water out of the Nuk sippy cup. He kind of stopped doing so hot with the bottle, mainly just chewing on it.

His weight went up another .5 oz. this week. He had a huge bm right before the weigh in, though.

We've sped up his feeds to go in over 1/2 hour rather than taking an hour to go in. He's tolerating that well. By the end of the week or early next week we'll bump up his 4 daytime feeds to 170 mL each time and reduce the overnight feeding by 40 mL. Hopefully we can keep that trend going until he is off the overnight continuous feeding and only eats during the day (like most humans!)

Sorry that the updates have slowed down. We don't have much news and haven't been out so we don't have much to talk about! No news is good news, that's for sure!

Mookie is turning three tomorrow and is so excited about her "blue bunny cake" that we'll be having.

Teething?/Cold?/Separation Anxiety?/All of the Above?

We're struggling here! Connie has had a runny nose and sneezing for a couple of days. He's fussy, not sleeping well and overly clingy. He wants to be held all the time which is very different for him. He has been throwing up more (almost every feeding) because of all the drainage so yesterday the GI switched him to 1/2 milk, 1/2 pedialyte. We're not sure what is going on, but mysteriously he's gaining weight! His weight today was up 5.5 oz. from last Friday. Maybe the extra 30 cal./day from the fortifier is helping.
The good news is his lungs sound clear and the drainage is also clear. The pediatrician says we can't give him anything to "dry him out" because they are no longer giving cold medicines to babies. So, guess we'll just ride it out unless he gets a fever or something.

GI Doctor Update

We're home from Dr. Brady's now. He weighed 21 lbs. 6.5 oz. That's up one ounce since last Friday. She was happy to hear he's vomiting less and trying new textures and tastes. She is still (Thank God!) in agreement with us that we'll give him more time to get back to eating orally. She just thinks that with all the development he's doing, it's definitely out of the range of possiblility. Also, the main reasons for doing surgery for the g-tube (and in his case repositioning the pacemaker) would be if he is pulling it out constantly and can't stand it in there or if it is prohibiting him from developing. It is doing neither so he's fine with it in unless things change. We are going to try to sneak some extra calories in his overnight feeding by adding one scoop of Progestimil. It is a special formula that is supposed to be super easy to digest and shouldn't cause any upset tummy. If he tolerates that for a week we'll add two scoops which would bump him up to 24 cal feedings at night. Then if he tolerates that for a week or so we can start adding it to his daytime feeds. We'll just have to see how he does. Basically now he's just maintaining weight and she'd like to see him gain some more. She did say that my milk is the easiest to digest and so after he turns one he will stay on it rather than switching to whole cows milk. I'm kinda bummed b/c I was looking forward to the end of pumping, but I'll try to stick it out if it's the best thing for him. She said if I can't take it and want to stop, by all means she can find something he can digest (they even make formulas that are predigested!) such as Alimentum, but I know those are really expensive so if I can, I'm going to try to just stick it out a bit more and pray he starts eating more food soon! We go back in 1 month and that time see the nurse practitioner.

Tomorrow he will get this month's dose of his RSV vaccine (synagis).

Either he isn't crazy about sleeping in the closet (don't worry, the doors are off!), is overtired at night when his nap is cut short, has a new case of separation anxiety, or all of the above. Last night it was a three hour process to get him to bed for the night! He got so mad he made himself throw up. I could tell he was not having reflux because he could lay down just fine if I was in there. Once I left, he screamed bloody murder. So, if he were "normal" I'd probably give him a few nights of cry for 10 min, check on him, reassure him, let him cry some more. But since he's not the crying makes more phlegm which makes him gag which makes him throw up which makes him not gain weight! If I go in there and pick him up then he learns bad habits but keeps his food down. It is so hard to know what to do sometimes! Parenting. . .such joy (yes, that was said sarcastically)!

Eating Update

Connie has been working hard and making notable progress with his physical development the past couple of weeks but his oral intake seemed to decline somewhat. The OT said that a decrease in appetite goes hand in hand with teething and since he's gotten a new tooth and another about to come through, it could explain things. He had been taking an average of 6-9 mL of milk with each feeding or at least 2X/day. With the holidays there was a stretch there where we didn't do a whole lot of other tastes/textures unless there was some table food that was safe for him to try (orange jello salad, potato casserole, etc.) but suprisingly, he took mashed bananas--even off a spoon--this week for the first time. We think he may actually prefer "real" food rather than baby food. He wasn't doing much from the spoon let alone closing his lips around it, but now we can get him to take two or three "bites" in one sitting. He has also has tried (and liked) some summer sausage and ritz crackers. Most of it is spit out, but this is normal when kids are learning to feed from a spoon. Today he took 16 mL (1/2 an ounce) of milk from the syringe in addition to his three bites of banana. We are so proud. On a side note, his PT, who hadn't seen him since the Friday before Christmas, was stunned at how much stronger he's gotten. She said that right now he's really in that transition time between sitting and going to all fours and once he gets it in the next few weeks he'll really take off from there. The transitions are the hardest, especially this transition for him. She said between his reflux and his chest wounds that it just isn't comfortable to put weight on your arms and learn to crawl. He is even standing with help at the couch for a few minutes! He looks so funny (and tall!) in that position. I guess because we're not used to seeing him like that.

I'm thinking of turning my closet into a mini-nursery! The deal is, Connie is getting a little big/mobile for the port-a-crib that is set up in our room. I think he'd enjoy a little more space, but I'm not ready for him to be back in the kid's room because I'm afraid he'll disrupt Mary Kathleen's sleep too much and I'm worried about him getting strangled in his feeding tubing and me not hearing all the shuffling like I would if he's in our room. So, I'm thinking of putting his crib into the closet and just moving those clothes down to the laundry room. We usually get dressed down there anyway because we don't want to wake him in the morning or at night by using our master bath.

Greg's company had their annual insurance rate increase this past month and the whole group had a 62% increase so our premiums all went up as well. That means that our portion (Greg's payroll deduction) of our family premium went up 274%. We're bumming about this, but feel very thankful that his company is still covering the majority of the premium. We are also confident that God will provide for all that we need. There is no lifetime max on this plan, though, so we are hoping they stay with this plan or a similar one.

Speaking of medical costs, we were pleasantly surprised to learn about a fundraiser for Connie that was held in Chicago this fall. Greg's brother and sister-in-law, Dave and Michelle, organized and conducted a raffle to benefit Conway's medical fund and it netted $2290! They bought an iPod and raffled it off, along with some donated prizes and it was a huge success. Thank you guys for your efforts and to all who took part in the raffle. What generosity! We also raised $172.50 and the Sharkey's fundraiser on 12/27! Thank you to all who attended and donated, especially Carol Stadler, Kathy Brown, Laurie Malloy, Kate House, Marge & Orville Schoene, Beth Eudy and Judy Schoene . Connie is so blessed to be loved by so many!

We go to the GI doctor tomorrow, so we'll likely update after that appointment.
Have a good day!

New Year, New Skills, New Discoveries

Connie continues to progress. Here's proof! He's bouncing in the exersaucer, especially when he watches his sisters jump on the trampoline. He discovered his first balloon yesterday and watching him play with such joy and wonder was amazing. We also learned that he does not like the sound of a drill. Greg has been building shelves downstairs to house all of these new toys that have accrued since Christmas and Connie is not a fan of the loud noises. I told Greg he probably has memories of the OR when they opened his chest. He has never been so averse to a noise before, be he seems genuinely scared! Anyway, here's the new video.

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Finally!!

Connie's nurse came to the house this morning weigh him and he finally broke the 21 lb mark! His weight today was 21 lbs. 5.5 oz. That's a 9 oz. gain in one week! He had been up to 21 and then lost and stayed between 20 lbs. 7 oz and 20 lbs. 15 oz for over a month but finally he's gaining again. I guess either he ate a few too many Christmas cookies or maybe I did and my milk was higher calories than normal (ha ha)! Yesterday the OT was so impressed to hear that he loved whip cream and even took it eagerly from a spoon as well as fed himself (put to his mouth and tasted) some orange jello salad, cranberry salad and potato casserole. He performed his whip cream tasting for her during her visit. She tried to expand his palatte (sp?) by offering him some sour tastes. We started with pickle juice and he responded by vomiting so much that it even came out his nose. Poor fellow. He had been doing so well and apparently was not in the mood for sour tastes. Maybe someday!

He continues to get stronger physically and has totally mastered sitting without support. He was reintroduced last Friday to the exersaucer and has been tolerating increasingly longer periods in it ever since. I think yesterday he was in for about an hour just rocking, bouncing and watching his sisters bounce on their new trampoline. When you are holding him he loves to bounce (we call it dancing) or rock. His new trick, one in which he was perfecting last night from 10:30-12, is where he makes himself free-fall backwards and you catch him and help him pull back up only to do it again over and over. He laughs hysterically the entire time. I can't wait for someone to take a video of him doing it. That game shows me that he is gaining trunk strength bigtime.

The dietician, Jenni, came today and we set the goal to increase him another 10mL per bolus feed in a month if he continues to tolerate the 160 feeds. If that happens, we can start backing down on his overnight feeds with the hope that eventually he will be like a "normal" kid and just eat during awake times. This would also allow him to be hungrier during the day and have more motivation to eat orally.

As you can see, we've been busy learning, relearning and loving this year. We hope that 2008 brings about continued improvement and more miracles of recovery for Connie and we pray that you all find the new year to be full of hope and health as well.

Merry Christmas!

We've had a busy time these last few days, but then, who hasn't? Connie has been to four Christmas parties (three have been family parties) and has done so well adjusting to being out of the house and held by others. I feared that being with me so much he'd be particularly strange around new faces but that hasn't been the case at all. He loves smiling at all the extended family. Starting on evening of the 21st, he began throwing up again and by yesterday he was throwing up all feeds except the continuous overnight. He threw up his tube on the way to Christmas Eve and I had to pull over and replace it on Hwy 270! So much for that Christmas outfit. When we got to Terri's he had to put his pj's on and we didn't get to show off his pretty clothes:( Then Mookie spilled her drink on her dress and was cold and wet, I spilled Connie's milk before pouring it in his pump and then about half way through he started fussing like crazy. We called it a night before 8pm! Mary Kathleen won't walk anywhere on her own anymore (perhaps jealousy that he gets carried) so that made for a lot of fun. Then on the way home he threw up again. That's when I started crying. I told God I wanted Connie to get a break from the throwing up and that it was Christmas. I just cried and cried all the way home last night begging God to make it better. Do you know that Connie didn't throw up at all today? I guess God heard me. Hope so.

Anyway, thank you all for your support and prayers and cards this year, especially at Christmas. What a year it has been! Today is a good reminder that while we have a long road ahead, we need to stop to celebrate. Celebrate our Lord's birth and celebrate the gift we've been given this year in Connie.

New Video

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Vomiting/GI Update

Conway is currently receiving his feeds over one hour. We had to slow down the rate a couple of weeks ago because the vomiting increased again. This has helped, but it seems, as usual, that it slowly creeps back in. Now we are waiting until he is upright for awhile and gets several good, productive coughs before we start a feed. Getting rid of the mucous first seems to help.

Dr. Brady (GI doc) called yesterday to say she got the swallow study results and discuss a plan. I told her that we ran out of formula during the snow and he seemed to keep his feeds down better so she gave us permission to stop fortifying for a couple of weeks up to a month and time, his weight, and his vomiting will tell if it indeed helps since he seems to wax and wane on the vomiting anyway. He has good weeks and bad weeks so hopefully it isn't just a good week and it actually is a step toward less vomiting.
She is still hesitant (thankfully) to proceed with previously discussed surgical options. She is just so pleased with his neuro, physical and cardiac progress that she hates to interrupt that with an invasive procedure and recovery. She isn't even sure that the surgeons would be able to move the pacemaker AND place the g-tube all in the same surgery. What a bummer that would be-to have the pacemaker moved and then have to go back to have the g-tube at a later date! She reiterated that the g-tube is not going to fix the reflux. It would cut down on the irritation that the tube causes and maybe make it more pleasant to swallow/eat orally. She just is very reluctant to put him under anesthesia for three hours (the tube is only a ten minute procedure, but the pacemaker moving is a different story). When asked about the fundoplication she said she really doesn't see that in his future, but she'll talk more with Dr. Bromberg and we'll talk again in a few weeks.

Connie has been working hard on oral practice. We were given the all clear to introduce more solids so we were thinning stage one baby foods with fruit juices or breast milk and giving to him via syringe. He generally takes about 6-9 mL of solids at each session where we try this (usually about 2X per day). At regular mealtimes, if he is awake, he is offered a variety of textures and finger foods and will put them up to his mouth to taste but does not ingest them. Lately he has shown a preference for liquids, especially warm milk. It is a real chore to get the thicker stuff into him, but he has been eagerly going after the syringe when it has breast milk in it. Today he excitedly "drank" (and I use that term loosely) 22.5 mL of milk out of a combination of three methods of feeding. We started with the syringe and then advanced to the medicine cup pacifier after I noticed he was trying to chew/suck on it. He can't control how much he gets with the syringe so with the paci he can bite/chew/suck and get rewarded with some liquid. I then tried the take and toss kind of sippy cups with a lid. These lids prevent major spills and slow down intake, but don't have to be sucked hard on like the no-spill playtex kind of cups. He went back and forth between the paci and the cup, playing with one while drinking out of the other. All in all, when he was done, he had taken 22.5 mL. This is a first! Granted, he didn't swallow near that much. His oral motor control is not good enough to have a very organized swallow so much of it dribbled out. The most exciting thing about this is his WILLINGNESS to participate in eating! Please continue to pray for progress in this area. It would be wonderful if he was able to mow down (or at least tolerate) on chocolate birthday cake by the time he turns one!

Cardiology Update and More!

Connie had an appt. at 11 am today with Dr. Bromberg. I was a little anxious over the weekend about what I might hear, but didn't think too much about it. As soon as I turned the stroller around so that Connie was facing Colleen, the nurse, my fears were relieved. She and the other nurse were falling over themselves commenting on how good he looked and how good his color was (his color has never really been an issue though, like most heart kids) and how big he was, etc., etc. They even remarked at his crazy hair. His weight today was 20 lbs. 11.6 oz. Down a bit. Funny, they all think he looks so much bigger and yet his weight hasn't gone up the last month. Dr. Bromberg even said that this is the first time he's seen him look "like a normal baby" and not "so skinny". His length is 31.5 inches, which is taller than before. I think just last week at his well baby visit he was 30 inches.

Then they asked me a bunch of questions about his endurance, sweating, breathing, etc. Colleen listened to his chest and took his blood pressure which was "perfect". Then they checked his pacemaker with four little electrodes on his chest which he tried to pull off constantly. He started out a little quiet and shy and quickly turned into a normal, curious 9 month old. He wanted to investigate everyone and everything in the office. When Dr. Bromberg came in and was standing next to him while he looked over the pacemaker stuff, Connie wanted his watch and ID badge. Dr. Bromberg said he couldn't see why anyone would call him developmentally delayed other than the fact that he's not crawling yet. He was so pleased with everything. He took him off the Spironolactone (potassium sparing diuretic) and decreased his lasix (other diuretic) in half. He said that at the next visit, he may come off the lasix altogether! Even though his bp is perfect, he is increasing his Enalapril (bp decreaser) from 1 ML, 2X/day to 1.5 ML 2X/day. This is in hopes that it will help the heart to pump a little stronger so that the leak is decreased and less blood regurgitates back down. We don't have to go back for three more months!

In related news, we got to talking about his GI issues and I asked him about the possibility that Connie's problems stem from a vagus nerve injury during surgery. He nodded like he had thought of that too. He said what makes him think that that isn't the case is that usually patients will also have a paralyzed diaphragm and/or paralyzed vocal cord. I asked what possible treatments there were if that were the case and he said that nothing could really be done, that it usually spontaneously heals on it's own. He said he was pessimistic about that for Connie because it would have likely healed by now. His personal, "layperson" opinion is that a fundoplicaton and g-tube are in order here. I guess we shall see. Today I'm just reveling in the glory and the light of this wonderful blessing we've been given in having such a good appointment. Praise God!

However (dramatic pause), there is never a dull moment around here and never a positive note that isn't drowned out by a negative one. Early Sunday morning, Mary Kathleen fell out of bed and complained that she hurt her shoulder. Her behavior was not right and she didn't "get over it" quickly at all. I called the doctor's exchange and they recommended we follow up with our ped. today. We did and he suspected a broken collarbone. He said it is easy to fracture and fairly common in kids. He sent us downstairs to an orthopaedic doctor where she had her first (hopefully last) x-ray. She did very good and was so brave for all of it. She surprises everyone that she isn't afraid of procedures or shots or whatever. The x-ray showed that her collarbone is indeed broken. The doctor said that children this age heal very quickly (2-3 weeks). The remedy for this type of injury is limited to wearing a sling. So, her right arm is in a cute little dinosaur sling. She doesn't like it one bit and has reminded me of that fact several times in the past couple of hours. She is to wear the sling until she appears to be using it a lot more and her activity level is to be dictated by her. The only limit is that she is to stay off the monkey bars and avoid climbing. She has no interest in that right now anyway with the pain she's experiencing so that shouldn't be a problem. She is allowed to have motrin every six hours if necessary. She looks like such a big girl with her sling. I think I was that age when I had my first broken bone. I only hope she doesn't have as many as I had! We go back for a follow-up x-ray in three weeks.

So, $100 in copays, three office visits at two different hospitals and six hours later, we are home and staying put. Just when I complain about not getting out of the house because of being homebound with Connie for the winter cold and flu season, I get to spend all day driving around with them! Woo hoo!

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.