Another Yummy Day!

We went to the park this afternoon. Here are a few pics.





Here's the pruneface himself

Connie went tubeless again today! He had a big bm and two small ones and more wet diapers than yesterday.
He's eaten:
1 jar of stage one prunes and 1/4 jar stage 2 pears & pineapples mixed with reddi whip cream
1/3 CUP Progresso Vegetable Beef Soup (pureed in blender)
sips of strawberry milk
3.5 oz of water
1.5 oz of half and half and 3 bites of chocolate pudding (not the sugar free kind!)
H20 at the park
1/3 CUP Progresso Chicken Noodle Soup with Carrots (pureed in blender)
1 oz. of half and half
1/6 CUP of fresh mashed banana with whole milk (in the blender) drizzled with hershey's chocolate syrup
20 cc's (almost an ounce) of half and half before bed

At dinner, he actually put his water cup down in favor of the cup of half and half. I bought some today at the store thinking I'd add it to some of his foods to add some calories, but I poured some in a cup for him to drink to see if he would. He loves it! He's definitely his mama's boy! I could drink that stuff by the gallon if it wouldn't show on my hips. Tomorrow he goes to Dr. Brady (GI doc) at 2pm. Say a prayer she lets us keep the tube out.

I got an email today that ProFlowers is donating $10 from every bouquet in the month of May to the Children's Heart Foundation. If you are sending flowers to anyone for Mother's Day or just because, you might check out this link. Finding better treatments for congenital heart defects would make a million moms happier.

Oral Intake Totals

Here's what he did today:
1 jar of apricot medley at 5:30 am.
1 stage one size jar of peaches and some bites of banana yogurt plus at least 4 oz. H20 at 11 am. At 2:30 pm, he took 1/2 jar of ham and apricots and some sips of peptamen. At 5:15, he ate about 1/4 jar of butternut squash mixed with turkey (rotten consistency) and at 7pm he at 3/4 jar of pears & pineapples. He threw up his early morning one b/c of that "morning cough" he has. But nothing since then! Yay! He drank more liquids today, but his wet diapers still aren't back. Keep praying that the doctor will see these improvements and agree to let us keep trying him without the tube.

Eating Totals

Here's what Connie ate today:

7am: 7 spoonfuls of apples & blueberries
11am: ? bites of cream of wheat mixed with strawberry syrup/sauce
3pm: 1 and 1/3 jars of mangoes and fruit medley
5pm: 2/3 jar of fruit medley
7:30 pm: 1/2 jar bananas & plums

He's had a sippy of water with him all day and at meals he's been given peptamin to drink. He's doing better with the peptamin. At least now he's not making the face that says, "What is this? Where's my skim milk?"

Just thought you guys could say a prayer asking God that this pattern continues and his oral intake continues to increase. He's been without his tube since late Friday morning. I've put in a call and emailed his therapists about "the new plan" so we'll see what tomorrow brings. One day at a time, right?

Are You Sitting Down?

Because you won't believe what I'm about to tell you. Connie just ate one and one third jars of baby food! Doesn't seem so great for a 14 month old, but considering the most he's ever eaten is a couple teaspoons, this is unbelievable. We're talking major milestone here. Yesterday he threw up his tube and instead of replacing it, we tried orally feeding him b/c they always tell us to take advantage of the opportunity for him to eat without something in his throat. Well, he was a bit more receptive so we kept it out and fed him again orally before bed. When we tried to give him his meds he threw up b/c he didn't like the taste of the digoxin. This morning, I increased him to 7 babyfood spoon dallups (sp?)and he took it. He isn't drinking a ton, but he is more willing to drink the peptamin every time we give it. Then today after his nap, we sat him back in the chair and I started with seven dallups and he just devoured it so I kept going and he finished the entire jar! I stupidly tried to give him some meds orally and he threw up again. I didn't want him to have that taste in his mouth so I gave him some fruit medley babyfood and he had another 1/3 jar. I put the rest of his meds in some water and gave him that in a cup. He proceeded to throw all of it up but drank some plain water after that. This kid is amazing! We're going to keep it out and try again in an hour or so and see if he'll eat more. We're just playing it by ear right now and praying for God's will and guidance.

A big thank you to Connie's fan club for braving the gusty winds and cool weather to come out for heartwalk this morning. It was great to see Grandpa George, Great Aunt Barb, Meghan and her friend Emma, Nicholas, Mary, Clare, Cece, Mary Kathleen, Kathy Brown, Judy Schoene, Mary Ann Lyons, Carol Stadler, the Dietrichs and Aunt Julie. Connie even did a little walking (holding on to my hands, of course) himself. Your time and donations to the American Heart Association mean so much to us. And yes, my goal for next year is to get his face on one of those Survivor posters. He's more than a survivor, he's thriving!

Compliments

I had to share this heartwarming compliment that Connie received today from his Occupational Therapist, Carla. We were finishing up his therapy session and gave him a peanut butter cracker. He excitedly took a bite and promptly gagged and threw up. He proceeded to gag and choke on phlegm for a couple more minutes before finally collecting himself. He immediately was playful and willing again to keep trying to eat (we didn't make him do the cracker again). She said, "Wow. He's got such a great personality. He just gets right back up on that horse every time, doesn't he? It just amazes me that he's so willing." I shared with her what Deb, the PT, said about him last Friday about being so impressed that he's willing to try everything she asks and isn't fearful of trying new things. Carla said that most kids have a lot of behaviors and crying and get upset when they throw up. Not our Connie. He just carries on. Then Carla said that that trait of getting back up and dusting off will serve him well as he gets older. That got me to thinking that maybe that's one reason God's letting us keep him here with us. Because we can learn from him. He's not 14 months yet and has already taught us so much.

Stationary No More!

Connie is officially on the move. Last night he made his way from in front of the coffee table to in front of the love seat (about five feet away) and pulled himself up on my leg. He did it before I even realized what he was doing. Greg and I were talking and I looked down and he was standing up and holding on to my leg. He has fallen off of our bed (it didn't phase him) and seems afraid of nothing. Deb, the PT, said that is one thing that impresses her about him, that he's not afraid and that he's willing to try any new skill. We figured out how to adjust the wheels on his walk-behind toy so that doesn't roll quite so easily and he now can stand at it and take a couple of steps without us holding on to the toy! Today was our first day trying the 50/50 blend of formula and breastmilk and he threw up the first two attempts. I started to get bummed, thinking we were going to have to go back, but the next two he did fine and didn't even flinch. I think that the problem is we went from 220ml's two weeks ago to 205 mls last week (we could go down on volume and get the same total calories/feed since we were introducing a more caloric fluid)and then up to 230 mls this week. We want him to be at 250 mls by the time he gets to 100% new formula so that would be 230 this week, 240 next week and then 250! So, it's hard to tell if he was struggling with the increased volume, the concentration, or neither. Since he kept the last two feeds down we'll continue with this plan tomorrow and see how he does. Hopefully he does as well as he has with the past adjustments.

Connie's cousin, Liam, came over today. After their afternoon naps they played outside together until it got cool. Inside, Connie was very good about sharing and showing his younger cousin how to shoot hoops and bang toys together. He needs a little practice being gentle. He gave Liam "love pats" with about the same level of force that he does the dog (i.e, too hard!). Here are a couple pics of the boys hanging out under the swingset and Connie with his walking toy and Grandma Marybelle. Enjoy!



We are so thankful and pleased with the progress Connie is making. It is so hard to believe that 8 months ago exactly I was packing for our trip to Michigan and the start of this whole ordeal. What an amazing journey it has been! I've learned so much about myself, God and even medical terms I wish I didn't know. God has also shown Himself to me through so many of you and many others out there who don't even realize how they've touched us. We are so blessed. I want to remember this feeling for a long time. Hopefully I'll remember it the next time a challenging situation presents itself :)

More Progress

Today was a busy day, Connie-wise. First, we started the morning with a visit from our parents as teachers parent educator, Jennifer. She spent the hour watching Connie play. She brought things for typical 13-14 month olds and he did great! She even brought some activities that she normally reserves for 15-16 month olds and he was able to do those as well! Hooray! Then we made our way back down to Children's for his 6 month follow-up with the neurologist. Can you believe it's been six months? The doctor was very pleased with his progress and also very happy to hear he's had no more seizures or other major health events since he saw us last. He did say that Connie's lack of eating and talking is a concern, and that if, by our next checkup, they do not see marked improvement in these areas, they will recommend stepping up the therapy visits for sure. We are so thankful that he's just a normal little boy in almost every way. We know that God heard everyone's prayers and is answering in His time.

The big news is Connie can crawl! Last night he woke up at 10pm and just had to show off. We ended up playing with him until quarter to twelve because he was just so full of energy and enthusiasm over his new skill. Greg was laying on the floor eating a bowl of cereal and Connie wanted to see what that was all about so he went from sitting to all fours and took four to five "crawls" forward. He does seem to have some confusion about moving that second leg to catch up with the first, but I'm sure with more practice he'll nail it. One other time today he made the attempt to get somewhere, but for the most part, he's getting to all fours and lunging forward and "talking" excitedly and then goes back to sitting. Silly boy. He can also pull himself to standing if you hold his elbows. He's now mastering the art of wrestling on the floor. I get down and play airplane with the kids and when it's Mookie's turn I sit him next to me on the floor and while I've go her in midair, he pounces! He doesn't fight fair, either. He goes right for the face and you can't get away because he's got a fistful of hair!

Thank goodness the dietician is coming on Friday because today at the doctor his weight was 24 lbs 6.5 oz! That is an ounce and a half shy of a one pound gain since last week! We've been adjusting his feeds, but keeping the same caloric intake so I'm not sure what's going on. All I know is he's starting to pork out a bit!

Contagious

I guess I've been hanging out with Connie too much as the doctor has put ME on heart medicine! My heart is fine, but he feels like my 'sinus' problems are really migraines so I'm restarting meds for high blood pressure as a preventative. The beta blocker, Atenolol, should help. We'll see. I say restarting because I was put on Inderal, a similar drug, back in 2000 to control/prevent migraines. I stopped taking it sometime in late 2003 as my headaches were virtually non-existent at that time. I have a crazy bad cold or sinus infection or something along those lines and thought I should probably see the doc since it's been off and on for at least a month. I thought he'd give me an antibiotic and send me on my way. Boy, was I surprised?! After talking more he came up with this theory. I'd think he was off his rocker except for the fact that my beloved sudafed and tylenol have not been touching the 'sinus' headaches I've been having lately.

Connie's doing well and doesn't seem the least bit phased by the procedure he had last week. I'll just be glad when he can finally have a real bath again! He HATES sponge baths. . .and he's terrified of having his hair washed in the sink. The last one he got he literally got so mad and worked up that he threw up. It made me think, "Was it worth it?" I mean, we bathe him so he doesn't smell like puke and he pukes shortly after the bathing so maybe it's not worth putting him through the torture of it all :)

He has been really snotty lately (clear, like always). With this, we typically see a reduction in his oral intake (like from barely nothing to nothing!) and an increase in his vomiting. This time is no different. But today I saw two new teeth, incisors, I think, popping through. Hopefully once they are in a bit more this congestion and drainage problem will go away. Teething seems to be the only explanation we ever can come up with for these symptoms. We are in the process of weaning him off of breastmilk completely and working toward the goal of getting him off of the overnight feed. He now gets his new formula, Peptamin Jr., at 100% strength for the overnight feed. His daytime feeds are at 25% Peptamin Jr. and 75% breastmilk. We'll do this until Friday or so and then try him at 50/50 for a week and then 75/25 and then hopefully by the end of May he's at 100% Peptamin Jr. 4X/day and nothing overnight. The Peptamin his a lot higher calories per ounce than breastmilk so he won't need quite the volume. We're also hoping that he'll wake up hungry in the morning once he's not getting fed throughout the night so he might be more motivated to try to eat orally. This is a long process and quite trying on the patience. I've been weaning down on pumping and digging into my freezer stash of breastmilk. I'm now only pumping once a day and hope to be done soon. Since I'm on that new medication, I have to dump all the milk I pump :( I told you all we'd need that stuff in the freezer! We were told at his last OT session not to be surprised if he still has this tube a year from now. Many people have been asking lately, and I have been growing impatient with his progress, so I just thought I'd tell you where he's at with that and what we have been told to expect. I'm just thrilled that he's doing so well cardiac-wise because the longer we can put off surgery, I think the better chance he has of coming around on eating. If he's got unpleasant stuff going on and people are putting things in and on him that don't feel good, it's that much longer before he trusts us that it's okay to eat. So, it's a good thing that it looks like we're in the clear for several years that way. Thanks for looking in!

Sliding Video

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Pics and video from the last two days (including cath day)

Photo and video editing at www.OneTrueMedia.com

We're Home!

Title says it all.

Afternoon Update

Woke up at 3:15 screaming until 4pm. No tricks worked. The plan is to tolerate a feeding and get Connie back home. Mom is currently holding him and he's getting heavy but it's the only way to comfort him. Every time she sits down he goes ballistic.

We're hoping to get out of here at 5:30pm, but that depends on how well he does with the feeding he's getting right now.

So far so good and no throwing up.

He's Out

We just met with Dr. Balzer and got the report and viewed the cath. He has considerable narrowing in the pulmonary artery going to the right lung. That is where they ballooned and the balloon made no difference in pressures. It went right back to the way it was. During the cath, his pressures in the RV were about 2/3 of the LV. This is too high, but also a bit misleading. During sedation, pressure drops from around 100 to 70, so a reading in the RV of 55-58 seems really high compared with 70, but not so high compared to 100. He talked to Dr. Bromberg during the cath and decided not to go ahead with a stent at this time! Yay! He said he can probably even go home tonight! We are thrilled. We follow up with Dr. Bromberg in a month. He thought we'd most likely do another cath in a year to two years, but Dr. Bromberg will decide that based on other tests over time. I asked how the RV-PA conduit looked and he said it looks good and if it stays as good as it is now that he can go 5-7 years before having it replaced! Initially, after surgery, we were told 3 mos-3 years, so this is outstanding news. No more open heart surgery for at least five years (for now, anyway). He also has two leaky valves but the leaks appear to be mild at this point. I told him that they had been calling it Severe Neo-Aortic Insufficiency and he said that over time with improved heart function, that the leaks can improve and that appears to be the case. Yay again! Also, we could see the two residual VSD's but they are very small and pose no problems to him.

Thanks for the prayers. Now we just need prayers that he'll wake up and then that he'll be sleepy again for the length of time that he has to lay flat (six hours, I think). They said they can give him something to help, but we're dreading keeping him happy and flat for that long.

Erin and Greg

First Update

Heather just came in to tell us that they have started ballooning. Ugh. This means that he required an intervention and we are definitely going to be admitted for an overnight stay. When Dr. Balzer came in to talk this morning, he said he didn't think ballooning would work so now we are kind of expecting that they'll have to stent it:(

Pray that if this is the case that he does not develop a big leaky pulmonary valve.

I feel like the wind just came out of my sails.

Cath Update

They took Connie back about an hour ago. He got a little versed in his tube before hand and it kicked in quickly. He was carefree and zombified in no time at all!
They told us they will come with an update around 10-10:30. The procedure is supposed to last around three hours. We are waiting in a private room where he will "recover". This is our first experience with Children's Hospital and we are very impressed. From the atmosphere to the staff, it has been top-notch. I feel like writing them a letter to tell them so!

Dr. Balzer came in before they took him and reviewed the procedure and the possibilities. He "doesn't think" he'll have to do anything, based on what he saw on yesterday's echo. He said that the branch pulmonary arteries weren't visible in that study so he's not certain. He said if intervention was needed he doesn't think ballooning would work and he'd probably have to use a stent. The problem with stenting is they have to use an adult sized stent which would cause a pulmonary valve leak. I moaned about that because he's already got such a bad leak on the aortic valve. He said that he's actually got some leakage on both valves at the present time but that they are both MILD. He said that from what he saw yesterday they are MILD leaks. I wasn't going to argue with him. He's the doctor. If what he says is true, though, that means that Connie's Aortic insufficiency is not mild, not severe! Praise God. I guess He kept His promise when he told us on Easter that it was time for Connie to be healed. Slowly but surely, his heart is getting better!

We'll update more when we hear. We've also got some cute pics from this morning but I forgot to bring the cord to upload them.

Thanks for checking in.
Erin and Greg

Prayers for a Good Cath Needed

Please pray for a safe trip to Children's this morning (we are leaving in a few minutes) and that all goes well with Connie's cath today. He is first case, so around 8 or 8:30 cst is when they will get started.

Connie is on the Move

Today Connie got himself to a three point stance and up on all fours a few times without any help. He is right on the verge of taking off. He even moved one leg and one arm forward in an attempt to crawl toward something. Not to fetch a toy, rather the box of toddler wipes! He "hops" on his bottom and is especially mobile on the tile floor in the kitchen. Slippery surface = Easier to move.

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Tonight he "rode" on the ride on toy all by himself and actually made it move. This is a first! Granted, he could only navigate it backwards, but a feat nonetheless. I was proud of him for even balancing so well on it. He probably stayed on the thing at least 30 minutes with absolutely no help. Here's a little video. He stopped moving so much once the camera came out--typical! Oh, and please disregard the fact that it is a pink Disney Princess Ride On. It was Mary Kathleen's. My advice to new parents: Buy gender neutral "big" toys, especially if you have a girl first. No one bats an eye when a girl rides a black bike or blue scooter, but give a boy a pink ride on and you are asking for looks!

Heart Walk Reminder

Okay folks! The walk is less than a month away and we need more walkers and more donations to reach our goal! To join the Care4Conway team go here.
Hope to see you there.

Got a call from Children's today confirming next Monday and Tuesday's procedures. So, we're all set now. We'll post updates as soon as we find out anything. We were told that the cardiologists attend a 'cath conference' on Wednesdays and since his cath is Tuesday they should be able to discuss it the next day.

Update on Gerri

Precious Geraldine, the five year old girl who underwent the same surgery, with the same surgeon as Connie died early this morning. Please keep her family and friends both here and back home in the Philippines, in your prayers as they adjust to life without their sweet girl. If you'd like to send a message of condolance, you can do so by signing onto her carepage at www.carepages.com, cp name: ourpreciousgerri, message board.

Cath Scheduled

SLCH called today to set up Connie's cardiac cath. He will have pre-op testing (echo, ekg, chest x-ray and meeting with the anesthesiology team) on Monday, April 14and the cath is the first case on Tuesday, April 15th. Please say some prayers that he will handle the general anesthesia well. God sent his servant at Easter to tell us that it is time for Connie to be healed and we have faith that this diagnostic tool will show that his heart is indeed healthy. Sometimes thoughts come creeping back in. Fears that they will tell us it's time to do some sort of intervention. We pray that our faith will remain strong during this trial. Since he is the first case of the day, there is a chance he will get to come home Tuesday night. They say it all depends on how he's doing or what all they do while they are in there.

Diarrhea

Connie has had loose stools for about 6 days now. He normally has one bowel movement every other day (since we've been home from MI) and now he has been having at least three every day and they are loose. The GI doctor wanted him to come in and so we did and guess what?! His weight is up! He was 22 lbs. 15.5 oz and last week he was 22 lbs. 8 oz. Not sure how that happened, but my guess is, that even though his stooling and vomiting have increased, that the weight gain can be attributed to the increased calories from the Peptamin Jr. (new formula). It is 30 cal/oz as opposed to 20 cal/oz of breastmilk. Of course, he's only getting about 4 oz of this new stuff per day, but I guess it's already making a difference.

Anyway, the doctor said that she feels like the formula is what is causing it. Apria Healthcare is who supplies the formula (you can't find it on store shelves) and they were out of what she prescribed so they sent a substitute. It doesn't have "prebio" or fiber, apparently two things he needs. So, after waiting a week and a half to get ANYTHING, they send the WRONG THING! Luckily we got some samples that will hopefully tide us over until we get the right stuff. If the loose stools continue past Monday, she wants to send a stool sample off for a culture and possibly start adding some sort of fiber powder to his milk. Thanks for checking in. Also, please add 5 year old Gerri to your prayers. She had her double switch today at the same hospital with the same surgeon as Connie, almost 7 months to the day of his surgery. She is recovering and has a long road ahead. Their family is not from this country, so it complicates things further. Please pray for them.

Happy Easter!

We had an Easter miracle today! We met God at Assumption Church during the 10 am Mass. He came right up to us after Mass. First for a little background. . . I have been thinking about Connie coming to church on Easter for some time now. I don't know why, but it was very important to me for him to be there, for us to be there as a family, all together. We haven't been to church all together since a month before Connie's surgery last August. He's been homebound all winter, but the cardiologist said he could start going out in public now that the flu season is just about over. I guess one reason it was so important was because last Easter he was baptized and we had so many question marks about what the future would hold for him and now, one year later, he is getting back on track. He's here and that's all that matters. It feels like we've come full circle or something. Anyway, we all went to church and I was happy (then I remembered how hard it is to entertain a one year old for over an hour!).

They added extra folding chairs to the end of each pew and we were in the front row in a regular pew. Across from us, right as Mass was beginning, an older gentleman with a listening assist device came to sit alone in that one extra seat at the end of the pew. During the "peace" he reached across and shook my hand. I've never seen him before or met him and we've been attending this church for five years. After Mass was over and people began to leave, he came up to me as I was holding Connie and asked what was wrong (meaning what was wrong with Connie. I guess he could tell something wasn't *normal* because of Connie's NG tube). I answered, "His heart." I pulled his shirt down a bit so the top of his scar showed and the man very matter-of-factly said, "God spoke to me and told me that it is time for this child to be healed. He told me to lay hands on him so that he might be healed." and then the man put his hand on Connie's back and said, "In the name of Jesus Christ be healed." and then he walked away. It's an Easter Miracle!

Lord, thank you for sending your servant to us today in order that you might heal our precious boy. We believe that you have the power to heal anything, no matter how big or how serious. We thank you for getting Connie to this point. We know that it is because of you that he is alive and getting better everyday and we look forward to watching him continue to grow and lead a happy, healthy life. In Jesus' name we pray, Amen.

Cardiology Update

Happy St. Patrick's Day to ya! Our little Irish prince went to see his cardiologist this morning. His last check up was exactly three months ago. At today's appointment they did his vitals and we recapped what meds he's on, what he's doing activity-wise and what kind of symptoms we are seeing at home. He's doing great. Blood pressure was a little elevated but the nurse said it was fine. His weight is 22 pounds, 8.8 ounces. Then they did his echo. It took three of us to keep him entertained. It seems as though our little TV loving boy wasn't the least bit interested in watching the Mr. Rogers episode playing on the wall. He wanted to grab and explore the equipment. His hands were full of ultrasound gel--yuck! One tech kept running out to get new toys (the noisier the better) for him to play with. The thing that worked best was my cell phone. He also enjoyed the bubbles and the light wand. The news from the echo was that the pressure in the right ventricle is about the same as it was after the surgery, about 50%. Normal pressure is 25%. When the pressure gets to be 2/3 (66%) of what it is in the left ventricle, then it is time to intervene (surgically or otherwise). Thankfully, we are not at that point and don't seem like we're heading to that point. Also, his left ventricle function is still great. This means that his ventricle is handling the severe leak in his aortic valve very well for now. Dr. Bromberg was very encouraged by this and said he was "a lot more hopeful about the prognosis" than he was after our last visit in December. The leak is not any better (we didn't expect it would be) but it's not any worse and he's asymptomatic for now so that is the best news. He said he can see him possibly making it five years before needing a new valve and he's really hoping that Dr. Bove could just repair that valve rather than replacing it. What wasn't very clear on the echo were the branch pulmonary arteries. They know there is some stenosis (which is why he has high pressures in the right ventricle), based on the cath he had in Michigan last September. The question is, how much stenosis (i.e. blockage/narrowing)? To find this out, they will do another cardiac catheterization next month. It will be done at Children's in St. Louis by Dr. Balzer. Dr. Bromberg will call him and tell him about Connie and specifically what we are looking for and some background on what's happened so far. This cath should let them see what the echo can't and get some more measurements on the pressures in the ventricles. If necessary, they will balloon open some of the narrowing, but Dr. Bromberg doesn't even think that would be necessary. He says that if we are the first case of the day, we may get to be outpatient. If he's not the first case, or if they have to do anything while they are in there, he will stay admitted overnight. Even though I had a good idea this was coming I am already dreading it. All those feelings seem to be rushing back and the thoughts of, "Will they find something and want to do surgery?" Praise God that as far as we know at this time, his heart is doing well and is handling the switch okay. His medications were changed a bit. We are going to try him completely off lasix. That means he is on NO MORE DIURETICS!! He's been on them since he was one month old. This is great news!! I'm glad because hopefully he can stay off them--at least until we're done potty training down the road. I can't imagine a kid learning to potty train while on diuretics! His Enalapril (blood pressure med) has been raised from 1.5 mL 2X/day to 2 mL 2X/day. We are bumping him up slowly until he gets to the max dose for his age/size. Dr. says that the more the better. We want to help that left ventricle as much as possible to maintain good function from the leak.

So, now we wait to hear our date from Children's on when the cath will be. We'll let you know when we find out.

Fundraiser

Carol has organized another fundraiser to help offset the expenses for Connie's medicine and office visit copays, etc. Here's the info:

Care4Conway Candle Fundraiser
Now – thru March 30th ALL Jar Candles $18

Trumpet Jar Candle
burns 35-40 hours For scent & color choices go to:
www.partylite.biz/daretobelieve
Available Scents:
Agave Nectar
Spiced Vanilla
Raspberry & Thyme
Ginger Lemon Meringue Pie
Coconut Milk Chocolate

Barrel Jar Candle
burns 55-60 hours burns 55-60 hours
Available Scents:
Crème Caramel
Tonka Bean
Ginger Pumpkin
Strawberry Rhubarb
Herbal Mint


Hurricane Jar Candle
burns 70-80 hours

Available Scents:
French Vanilla
Cherry Orchard
Cinnamon Sticks
Mulberry
Wild Fern
Seaside Mist


Box of 6 Votive candles
$7.50

Available Scents:
White (unscented)
Coconut Cove
White Gardenia Truffle
French Vanilla
Spiced Vanilla
Tonka Bean
Ginger Lemon Meringue Pie
Crème Caramel
Yuzu & Lime
Mango Tangerine
Cherry & Papaya
Pineapple & Pomegranate
Ginger Pumpkin
Nectartini
Bird of Paradise
Strawbery/Rhubarb
Orchid & Pink Peppercorn
Raspberry Thyme
Blackberry Honey
Fig & Olive Grove
Cherry Orchard
Exotic Spice
Cinnamon Sticks
Mulberry
Coconut Milk Chocolate
Honeydew
Herbal Mint
Bayberry
Wild Fern
Agave Nectar
Seaside Mist
Bella Luna
Teakwood & Cardamom
Sun-Kissed Cotton
Mandarin Basil
New Leaf & Aloe
Unwind
Relax
Revitalize
Goji Berry Chocolate
Acai Berry Mist
Elderflower Springs
Hinoki Steam
For scent & color choices go to:
www.partylite.biz/daretobelieve

Orders must be received via email, phone, or mail by March 30th

To order candles:

1)Email order information to Care4Conway@gmail.com

2) Call Theresa Charles at (636) 795 2864
(636) 724 1997

Payment for candles:

Total = # of jar candles x 18.00 + # of boxes of votives x 7.50
(Shipping, if needed, will be provided at no cost to you)

1)Make check payable to Theresa Charles
Mail to Carol Stadler, 1535 Country Bend Drive, St. Charles, MO 63303

2)Pay via Visa/MasterCard/American Express/Discover via Care4Conway.com website,
click on donate button , enter in the total of your order.


Sell to your friends and family, receive a bonus for your help:

1)Sell 10 dozen (20 boxes) of votives – receive one dozen votives FREE!

2)Sell 10 jar candles – receive on jar candle FREE!

GI Follow Up

Conway had a follow-up appt. with Dr. Brady yesterday and his weight is right on the curve where it should be. She's happy about that! I shared with her the screening results and she was also thrilled. I asked about "The Feeding Team" at Cardinal Glennon which is composed of a psychologist, dietician and OT and she said that for his age, she recommends we see a speech path at Children's that she's worked with in the past. So, we're waiting to hear back on what that might entail. The best news (for me anyway) was that we are going to start slowly introducing him to Peptamin Jr. formula and weaning off the breastmilk. That means there is an end in sight to the pumping! We'll start with his overnight feeding making it 1/4 Peptamin and 3/4 breastmilk and if he tolerates it, go with 1/2 and 1/2 for a while and keep bumping up the peptamin and decreasing the breastmilk. Our OT said that we also might see him "hungrier" or more willing to eat foods once he is all the way on Peptamin because Dr. Brady has orders for him to get 32 oz. per day (it is higher calories than breastmilk so he'll get less volume) whereas now he's getting around 37 oz/day. I also asked about weaning off the prevacid and reglan and she said that once he is eating food and we can pull the tube we will wean him off the meds. So, no time soon! He had OT today and since he did better than expected, we've upped his "homework" assignments. He now has to take 6 ML of babyfood 3X/day and continue offering the milk in a cup or peptamin JR in a cup. Sorry for all the details, just wanted to give you an idea of what he's doing these days! We go back to see her in mid-June.