Cowboy Connie

We don't have too many pics b/c my camera batteries died right after we got there, but we went out to the farm yesterday to visit with Connie's Great Uncles Doyle and Carl, Great Aunt Sylvia and several second and third cousins. He bounced on Holly's trampoline, let a real cowboy (cousin Chad) hold him and played on Cutter's rocking horsey before dinner. After dinner he was too pooped to go "hunt" jack rabbits in the pasture or ride on the four wheeler with Mommy and Uncle Tim. Here are a few shots of Connie and Cutter in Cutter's newly decorated cowboy themed room and one of Chad holding him when we arrived and one of Grandpa holding Connie and Cutter at Addison's baptism.

One More Thing

That's what I keep saying to myself. "It's not that bad, it's just that it's ONE MORE THING." Just got back from the pediatric opthamologist who decided Connie needs glasses. That's right, he'll be sporting spectacles after we get back from Texas (we're going for his cousin's baptism). His eyesight has improved, but he is still farsighted and also has mild astigmatism in both eyes. They said that these put him at a higher risk for developing crossed eyes. The doctor who examined him thought Dr. Tychsen would just send us home and bring us back in 6-9 months to check and at that time give him glasses if he hadn't improved. This was not to be. As soon as we get back into town we'll be going back down to Children's to get him fitted for glasses. He has to wear them at all times that he's awake except swimming and bath time. I'm so bummed. Not because of how he'll look or fear that he won't like wearing them. And I know that compared to where we were 10 months ago this is so irrelevant and not a big deal. It's just that it's one more thing. I know it sounds ungrateful, it's just where I'm at.

Baby Cate was called home to meet Jesus. Please remember her parents, Charlie and Ali, and her sister and brother, Ella and Dude (aka Charlie) in your prayers tonight as they mourn the loss of their precious, beautiful little evangelist. In her short 7 months here on earth her story managed to bring countless souls to Christ. God Bless the Cantrells.

Prayer Warriors Unite Again

This time we are asking for you to get on your knees and pray for Baby Cate Cantrell. I just got word of her tonight and read her blog and was floored by the faith of her parents. What an incredible family and witness to the Lord, even as they face such struggles. Please visit her blog and post a message of encouragement to her parents as they sit vigil at her bedside.

Feeling Better & Sleeping Better (Hurry. . .find some wood to knock on)

Connie seems to be feeling better as indicated by a somewhat increased appetite and playing independently. Yesterday he drank a good amount (about 16 oz. total) but didn't eat much and today he ate his normal amount but drank almost nothing (maybe 4-6 oz altogether). He's back to totally blended foods, per the recommendation of his OT. She NEVER has us go the "easy" route and is usually all for challenging him with different textures. But after seeing him Monday morning during his therapy session she said we have the okay to go back down to the blended soups and baby food consistencies. He wouldn't eat anything but a couple bites of yogurt for her. He will nibble on crackers and cookies while he's being fed, and getting the full amount in him has been difficult, but he's doing it.

The more exciting news, for me anyway, is that he's been going to sleep on his own the last few days. I have been putting him in his crib, on his belly, and leaving him. I noticed he was struggling to get comfortable as I continued trying to pat, shush, rock, sing (you name it, we were trying it) and he sat up in bed and then laid down on his tummy. He seemed to like it so now I've been putting him in on his belly. It's like it's signaled something in him that tells him it's time to sleep and not play around, etc. I just looked at him and told him I had to go out to the living room and fold laundry but I'd be right back to check on him. He let out three little whimpers and I never heard another peep. When I told Greg how easy it was he said, "Who'd have thought all this time all we had to do was reason with him?!" Cross your fingers that this new "phase" holds and that we can all get some better sleep from here on out--not to mention, get something done during the day now that he's napping better. Lately I feel like all I do is try to get him to sleep and eat. Literally.

Believe it or not, he's sick again!

Friday evening Connie had a very hard time going to bed. He has been struggling with sleep ever since he learned to crawl and eat, but this was different. He could not stay asleep and was breathing extremely fast (almost panting). And it wasn't as if it was breathing fast after crying. He wasn't even crying. His heart seemed to be pounding in his chest like he'd just been working out. At 1 am he woke up and stayed up. Around 4:30 this was still going on and I got Greg up to see what he thought of it. We decided to call the cardiologist's exchange and it turns out Dr. Bromberg, our doctor, was on call. I felt bad calling so early, but I was concerned that Connie might be having rhythm issues with his heart. He told us to take him to the ER thinking he might be in Atrial Flutter. The good news about having a pacemaker is that his rate can't go too high. The problem is that he could be in atrial flutter a long time and it go undetected because of the pacemaker not letting his rate go so high. They hooked him up to the telemetry and did an EKG, which looked "funny" but they weren't sure how his were supposed to look. They sent it to Dr. Bromberg who decided to come in himself and take a look. He got a chest x-ray which actually looked better than the last time we were there. We had the same doc in the ER that admitted him a few weeks ago. Dr. Bromberg brought the Medtronic thing a ma jig and interrogated Connie's pacemaker. He could tell from that that Connie was not in Atrial Flutter (thank God!) and that from a cardiac standpoint he was fine. His heart rate had gone back down to normal by this point so he told the ER doc that who then decided to discharge us. They labeled it an "upper respiratory virus" even though he had no symptoms except the breathing fast and we went home. We got home about 9:30 or so and I tried to feed him but he wouldn't eat. He took a good nap (probably since he'd been up all night!) and wasn't really interested in lunch when he woke. The afternoon nap turned into a huge battle and he was burning up. We took his temp and the thermometer shot straight up to 102 degrees and got there quickly. I gave him some tylenol and called the pediatrician. The doctor on call was someone I've never heard of and is not in our ped's practice, but I told her the story of the past 24 hours and even the hospital admit from a few weeks ago along with some background on his cardiac diagnosis. Once she heard he had a fever she said, "That explains it!" It's another virus. Give him tylenol or motrin and let him eat whatever he will eat. What?! We keep him inside all winter for fear he'll get sick and now the weather is warm and there aren't supposed to be so many germs out there and he's gotten sick back-to-back. He had a slight fever this morning but with motrin has been somewhat himself. His appetite is not great and he's not drinking much, but he also doesn't have vomiting or diarrhea like last time. I'm hoping he'll eat more and more each day and avoid dehydration. Last time, he got rather "dry" and came pretty close to being admitted for IV fluids. Please pray that he'll continue to feel better and eat more and avoid any further illnesses this season. I'm sure part of the problem is he's been exposed to so little because of staying home all winter, but what can you do?

So, that's our news. Oh, I almost forgot to add. I think they think some of the trouble he was having with getting comfortable and sleeping was because we've reduced his prevacid for reflux so they called Dr. Brady and she said to up it back to where it was. Now that he's had the fever and we know something different was going on I think it's safe to go back down, but we'll wait till he's feeling and eating better and then give her a call to see what she says.

NO MORE GI DOCTOR!

Today Connie had his last ever appointment with the pediatric gastroenterologist, Dr. Brady. His weight was up from last Friday almost a pound (yikes!) and he's now back near 24 at 23 lbs. 11 oz. She asked what he was eating and drinking and said we can try stopping the prevacid. She said to give him one dose a day for about a week and then stop altogether! Wowzers! Now he'll only be on two heart meds and a multivitamin! I've already called Apria and they're coming tomorrow to pick up their stinkin' feeding pump and IV pole. Good riddance.

In eating news, Connie has been doing great with textures. He ate 3/4 of a sprinkle doughnut on Sunday and yesterday had 3/4 of a hard boiled egg and fork mashed carrots. Today for the OT, he had whole slices of cooked carrots, meat sticks, whole peas (even two at a time) peach chunks and an assortment of other non-blended foods. He's really coming along. She says the blended stuff/babyfood consistency is way too easy for him now and suggested we start trying things like pancakes, soggy Kix cereal, spaghettios, etc. He's not doing a ton of chewing yet, but that will come with more practice.

Thanks for looking in. Please say a prayer of thanksgiving that things are going so smoothly and that he's making such speedy gains in therapy.

Weight Check Today

The dietician came out today and brought her scale. Connie's weight is down from 24 even on her scale two weeks ago to 22 pounds 13 ounces. That's just into the 50th percentile for age but less than the 10th percentile for height. Meaning, he's long and skinny, just like his Daddy and Sissy! We are disappointed, but feel it is solely due to his illness and we are relieved that he is back to normal intake. Hopefully Dr. Brady agrees next Tuesday!

Saturday, June 7th @ 7:05 the River City Rascals take on Washington and there is a promotion to benefit the American Heart Association. Proceeds from ticket sales (make sure you mention you are buying tickets for the AHA fundraiser) and from 50/50 raffles will benefit research toward finding better treatments/cures for Congenital Heart Defects! If the weather is nice we plan on attending. See their website for more details.

He's Finally Back!

Here are some cute recent pics:





Today was the first day Connie has really been himself again. He ate every meal and snack without a fight and is back to about two jars/meal with about 2 oz. of milk each time and 2 snacks of one jar each along with 2 oz. at his evening snack and 8 oz. of Carnation instant breakfast at his afternoon snack. Yay! He's back to playing on his own and roaming all over getting into everything. It's been nice to be able to let him play and start trying to get some things done around here. This house was beginning to fall apart while he was sick!

We went this morning to pick up his Sure Step foot orthotics. You can barely see them with his shoes on, which he has to wear with them since they are slippery on the bottom. They said to gradually increase how much he is wearing them until he will have them on 8-10 hours per day. Usually they recheck them every three months but I'm sure our PT will evaluate them regularly to see if they are rubbing or need to be tweaked.

Finally Turning a Corner

Connie had his last bout of diarrhea Sunday night and is just now starting to show flashes of his old self. His appetite went to zilch and he got a bit on the dry side. We were concerned when he had the sunken eyes thing going. He refused all foods but we finally got him to drink the Carnation Instant Breakfast like it was going out of style. Today, we were at our wits end with the mealtime struggles and he ate 75% better when his OT was here. Little Stinker. Looks like we (mainly me) have to change our attitude so he doesn't sense the stress and respond with negative behaviors. He ate his snack of plums just fine three hours later so hopefully we're on the road to getting back on track with eating. The true test will be Friday when the dietician comes and weighs him. Then we follow up with the GI doctor a week from today to see what she says about leaving the tube out longterm.

Never a Dull Moment

Just when we thought Mr. Miraculous was on the mend, he decided to throw us for another loop. Last night he was very hard to get to sleep. He was so tired but seemed like he couldn't get comfortable and everytime he'd settle into sleep he startle, almost like a newborn. At 11pm he woke up for about an hour and then at 4 am he woke up and threw up all over himself, his bed and his monkey. It was his strawberry/apricot bedtime snack so I thought maybe the strawberries were just too hard for his digestive system. I didn't understand that since he had them a few weeks ago and did fine, but figured maybe it was really bothering his reflux or something. After he woke up for the day, he wouldn't have anything to do with eating breakfast. He did chug 4 oz. of milk which he never does. We're lucky if we get 1-2 oz. in at each meal so this was unusual but I figured since he didn't eat anything he was filling up on milk. I secretly made it 50% half and half so it was still a ton of calories. Well, five minutes later he coughed and puked his milk everywhere. We had our follow up at 10 so I figured I'd tell the doctor about this and she'd say he had the stomach flu and send us on our way. By the time we got there, he had diarrhea too. After looking at his labs from St. John's she decided she wanted a urinalysis and more bloodwork to try to rule out something bacterial. She was thinking of putting him on Omnicef, but didn't want to aggravate the diarrhea problems with an antibiotic so she sent us back to St. John's to the outpatient lab. She said that she most parents aren't thrilled with the techs at DePaul when it comes to drawing labs on little ones. There was a big accident that closed two lanes just north of Dorsett so we sat and sat and then finally got there around 11:30. We didn't leave until 2:30! His blood draw went great (well, as great as it can for a baby who doesn't want to have a needle stuck into his arm for the third time in five days) but when we went to collect the bag with the urine sample, his diaper was soaked and the bag empty. He had had a whole small juice box at the ped's office but refused the water he was offered at the lab to try to get him to make more urine. Then he fell asleep. Then Mookie was hungry so we went to the cafe while he slept. I bought him an V8 fruit drink and after he woke up he drank some while we played puzzles for a minute in the lab waiting area. Another bout of diarrhea later the bag had urine and we could turn it over and get home. It made for a very long day. Mookie was so good with all the waiting and such a big girl to carry her drink and her food in the cafeteria. Poor Connie fell asleep on the way to both places and woke up every time we got out of the car and then slept for about an hour at St. John's and then fell asleep again on the way home. We went to Grandma and Granpa's to visit because Grandma hadn't seen Connie in about three weeks. He wouldn't eat his late lunch but he did eat a 1/2 cup of vegetable beef soup and 1/2 a saltine. He got increasingly clingy and whiny and fell asleep again. I thought he seemed rather warm so I took his temperature a few times and it kept climbing. He normally runs in the low to mid 96's so by the time it was 98 I gave him tylenol. He started to go back down and perked up a bit. He had a blowout diarrhea diaper so we changed clothes and came home. I did get him to eat about 1/2 cup of vanilla yogurt while I gave him his meds so his overall intake today was 1/4 of what it normally is. I'm a little concerned about his weight too. At St. John's during his inpatient stay, his weight on their scale was 22 lbs. 10 oz. I was a little bummed, but chalked it up to it being a different scale. Well today at the ped's office (again a different scale) they got him at 22 lbs. 4 oz. That is the exact same weight as in the beginning of March on their scale at his 12 month check-up and this time it was with clothes and a full diaper! This illness is coming at a bad time, when his weight is being super scrutinized. The GI doc threatened that if he went below 22 lbs. 1 oz that he'd not be able to keep the tube out. Hopefully she'll either make an exception since he's been ill during his trial run or else he'll pack on some pounds before the big weigh-in on June 10.

He's resting more comfortably tonight and has not vomited since this morning so hopefully we're on the tail end of this virus. The ped's office called to say that the labwork all came back and his numbers were still dropping so that's a good sign. No antibiotics. I'll continue to monitor his temperature and if he runs anymore fever I'll call and see about the next step.

Thanks for looking in everyone. We appreciate your thoughts and prayers.

We've Been Discharged

Sorry for the delay in updates. After we got home around 3:15 we all took turns taking naps to try to catch up on some sleep. No one got much at the hospital. Right before we got let go we had to be moved to the hallway because of tornado warnings in the area. They said they have a three leveled weather alert system and any warning that is a 2 or 3 means we have to evacuate the rooms. That was great b/c Connie's neighbor was about a 12 year old girl with a hacking cough. Think non-stop. Even his nurse said to keep him facing away from her since she was coughing so bad and he didn't need that. I quietly asked her if she could make the girl wear a mask so our nurse passed masks out to all the patients in the hall as a precaution and that way it didn't single out the girl.

The in-house pediatrician and Dr. Bruns (Dr. Bromberg's partner) viewed this morning's echo and chest x-ray and both felt they looked fine. Until official word comes back on his cultures from the lab, they are calling it "just a virus" of some sort. He was given a final dose of IV antibiotic (don't even remember the name) and sent home to follow up with Dr. Davis (the pediatrician) either Weds or Thurs. I think we're going to shoot for Thursday b/c Connie's got PT first thing in the morning and it would probably do him good to be "left alone" for a day. He was not too happy today and all that is involved with staying in the hospital was starting to wear on him a bit. I hope this isn't the beginning of being afraid of medical personnel. He's typically been so open to all the people but this morning they woke him up to do his echo and the tech didn't make much of an effort to be his friend, if you know what I mean. Same thing at X-ray time. He'd just fallen asleep for his afternoon nap and they came for him. We woke him up, undressed him and laid him on a cold, hard table to take two pics of his chest. Poor baby. Mookie is very happy to have Mommy home now too.

Now that things have settled down, I have remembered I need to thank Caryn, Adam and Mrs. Dressel for offering to stay with the girls until Grandpa could arrive Sunday night and also thank Grandpa George for dropping everything to come on a moments notice and last but not least, thank Grandma Marybelle for staying the night and taking care of the girls Monday so that Greg and I could be with Connie. Your help was so appreciated!

Most of all we want to thank God for watching over and protecting Connie during this illness. What seems like a little fever and runny nose to most people can quickly turn scary for our little miracle. Greg and I couldn't get the thoughts of two heart kids who recently passed away unexplicably from "just a virus" out of our heads so we decided to err on the side of caution and get it checked out. We are glad we did.

Funny note: The RN that saw us first in the ER listened to me explain his heart history, read the paper that U of M told us to give to any ER personnel explaining his condition and surgical procedures and then asked, "So this Double Switch, is that an operation?" Then the in house pediatrician from early Monday morning said, "Let me get this straight, he has Transposition that's been corrected?" I said, "No. He has congenitally corrected transposition. He had a repair called a Double Switch." I don't think she ever fully understood what I meant. It definitely feels surreal to me that when we are out of our small cardiac circle of medical professionals how his condition seems to puzzle everyone. Even his nurse practitioner that saw him today has a daughter with CoArctation of the Aorta and had surgery and after finding out we had his surgery in Michigan and no, we weren't from Michigan asked, "How did you go about finding a surgeon in a different city?" She was just blown away by that. The ultrasound tech said over and over how complex he was and how hard it was to get a look at his valves because his anatomy was so different. She does heart echos for a living and has been doing it for 18 years! Hard to believe she was puzzled by his defect. That said, we have absolutely no complaints about our stay at St. John's . Each and every nurse, PCA, doctor and tech were friendly and offered to get us anything we needed. That's pretty unusual these days to not get at least one person whose having a bad day. We would highly recommend them for peds and peds emergency.

We're In the Hospital

Conway was admitted last night following an ER visit for fever, chills, not eating and being inconsolable. The did a chest X-ray and blood sample in the ER and turns out it was a good thing we came. They normally get concerned with an elevated white blood cell count over 15 and his was 31. The good news is they were not new cells, they were mature, which means they could be in response to stress, not an acute bacterial infection, such as endocarditis (infection of the heart). Now we are waiting on cultures (24-72 hours) to grow out and they are doing an echo first thing Tuesday morning to look for vegetation around the heart valves, mainly the aortic. He is looking and acting much better today, even jumping on the bed! Can't really write more now because he's currently pulling on his IV and I'm trying to type this in the Ronald MCDonald room at St. John's. He's in room 399 @ St. John's Mercy. Everyone is so impressed with him and how good he is for all the stuff they are doing to him. He really has been a trooper.

Today was Weigh-In Day

and Connie tipped the scales at a whopping 24 pounds! He's gained 13 ounces in the last 13 days! So, I think it's safe to say that this boy is doing fine with eating. He's taking real food, blended in the "magic bullet" (thank you Grandma Marybelle, that thing is a godsend) and likes pretty much everything we've given him. I'm still measuring every ounce of liquid or solid that goes into him to show the dietician, OT and GI doc. He's generally eating the equivalent of two stage 2 jars of food for breakfast, lunch and dinner and two snacks a day with one jar at each snack. His liquid intake varies and depends on how full he's gotten during the meals. Sometimes he'll drink 2-3 ounces at a sitting, but usually he has an ounce at each meal/snacktime. I've been trying to remember to give him water during play, but it's hard to get in that habit. Especially since we never let Mary Kathleen have a cup of anything anywhere but at the table. They tell us that water actually increases the appetite, so we should start doing it more. Our OT said tonight when I called her to tell her the news that Connie should be like the poster child for fast recoveries. I'm thinking, "Eight months is fast?" But, she says that it often takes years for these he kids to start eating and when they do they really struggle. People can't believe that he's only been eating for a little less than three weeks and he's doing so well with it. Since Tuesday, we've been okayed to start introducing more textures. Some he does well with, some not so great. He's actually downed a whole cracker without throwing up, but sometimes one bite of something landing in just the wrong place in his mouth sends him over the edge. The other day he ate soggy Kix cereal and the first bite was chewed and swallowed, the next little round piece was bitten in half and choked and cleared and the third he vomited on. Obviously we're trying these new food textures at the beginning of meals so he's not losing any calories when he gags/throws up. It's all good practice for him so we're keeping up with it. He's able to successfully do real applesauce without pureeing it in juice now and fork mashed bananas. Our OT thinks that in another two weeks he'll probably be tolerating all meals at a fork mashed consistency. The problem with that is we'll have to find new creative ways to sneak extra calories in him. Now I can add sour cream, avocado, parmesan cheese, garbanzo beans, etc. to his food and he doesn't really know it and it's easy to get in him. That might change when we go to harder textures. We'll have to see.

The getting to sleep/staying asleep thing is still a work in progress. I always thought parents who said the cry it out method of teaching healthy sleep habits "didn't work for them" were just weak and pushovers! Now I think I'm admitting that it may not work for all children. First of all, 14 months old is not the typical age to start this. Secondly, children usually have a tough night or two and then gradually the amount of time they cry decreases each night until the light bulb goes off and they realize that it's in their best interest to just go to sleep without protest. Well folks, a true testament to how Connie's heart has healed is the fact that he has the energy to cry and cry and cry. Heart kids are supposed to be tired and sluggish and have no energy for anything. Especially endurance type activities. Not so with our little miracle! About our fifth night in, he increased his crying time from two hours to four and a half (yes, we did check on him periodically). Then he got himself so worked up that he vomited. I feared my worst nightmare was coming true--that he can make himself vomit if he's mad or doesn't like the way something is going. I've heard that some children make themselves throw up basically anytime they don't get their way. We decided a change of scenery would do everyone good so we set his port-a-crib up in the room with Mookie and tried that out. He got to be a part of her night time routine and he loved snuggling in her bed during story and prayer time. Then we put him in his bed and stayed in the room until he fell asleep. We also put a lullaby cd on and he liked that. So much so that when it went off an hour later he woke up. I went back in and sat on the floor next to his bed shushing until he fell back asleep. I put the music on repeat and he slept through until 7:22 this morning!. . .pause for putting him back to sleep. . .don't celebrate yet, it's taking over an hour to get him back to sleep today/tonight. His nap this afternoon took an hour and twenty five minutes before he fell asleep and then he only slept for 25 minutes. Tonight he fell asleep during prayers and woke up an hour later. Then it took forever, he fell back asleep and then woke minutes later again. I just got done with the second round of getting him back to sleep and I had to move Mookie out of the room as she was still up and it was past 10pm. Sheesh. My house is falling apart and I have no time to get anything started, let alone finished. This too shall pass, right?

Finally, Connie had his speech eval Monday, per the decision of the IFSP team based on our concerns that he is not saying any words and doesn't even really have that many consonant sounds. It was the opinion of the SLP that tested him that he should receive therapy 1X/month for now. At 18 months that may increase if he's still at about the same level. I expect he'll take off soon, but it's nice to have suggestions and someone following him in the meantime.

Happy Memorial Day weekend! We are so blessed to live in this country, aren't we? Every time I hear any negative political campaigning and Americans complaining, I think about many kids come here, to our country, to have their life-saving operations. I am grateful that so many fought to make this a place where the rest of the world wants to come so badly.

Good News Again

We just got back from the cardiologist for his one month follow up after his cath. The word normal was used over and over to describe him! His heart function is normal. His "severe" aortic insufficiency (the leaky tricuspid valve that was going to need to be replaced) is now classified as mild to moderate and the doctor doesn't think it will need to be replaced anymore if the leak stays like this. He said that it's unbelievable how far he's come and that he's like a normal toddler now. His pressures on the right side are a little high still, but not something that requires surgery. If the branch narrowing worsens, they can fix it in the cath lab. So, we're looking at a pacemaker change in the next five years (we'll evaluate on a yearly basis when we'll need to replace it) which is an outpatient procedure and replacing the conduit that is going from his right ventricle to the pulmonary artery sometime in the next 5-10 years. He said that compared to what he's already been through, that surgery is not that big of a deal. We are beside ourselves with relief and gratitude. We can't stop thinking about what the Holy Spirit said to us at Easter Mass about it being time for him to be healed. In God's timing, he's being healed. We go back to the cardiologist for pacemaker check, echo, x-ray, etc. in October. Yay! We get all summer off.

Thank you, Lord for gracing Connie with your healing presence. You are all powerful, all knowing. You had a plan for him long before we even knew about him. We can't understand your plan, but we trust that your plan is in our best interest. We know that all good things come from you and we must praise you for the good and wonderful healing that you are bestowing on little Connie's body. Please continue to help him make gains in feeding and cardiac function. Please strengthen his ankles so that he stands properly and can learn to walk. Please also help us while we go through this transition time as he struggles with sleeping. In Jesus' name we pray, Amen.

More Good Surprises!

On Friday afternoon, Connie started drinking out of a straw. He took three ounces of carnation instant breakfast. He takes that drink better from a straw than from the take and toss cup. Also, when he's getting bored and frustrated at meal times, I can extend his attention span by whipping out the straw.

Tonight, Grandpa was tooting a little toy horn and letting Connie try. In the past, he's 'blown' into the horn by putting it up to his mouth and yelling into it. This time, he actually made the horn make the appropriate noise! He did it over and over and over and is pretty proud of this new skill. I'm flabbergasted that he has the oral control to make the sound. He has to form his lips tightly on the horn and blow and he can do it!

Happy Mother's Day!

Next Step. . .Literally

Now that Connie is taking steps with help, we have noticed some low tone in his ankles-especially the right one. Following surgery he was low tone everywhere, so we're not sure if this is just some residual weakness that hasn't strengthened yet or if this is just something we've not noticed because he wasn't weight bearing much until now. Our PT is getting a script from the pediatrician for orthotics for his shoes. He'll probably get measurements sometime next week and as soon as we get through the red tape of insurance, etc. the turn around time is about two days or so. He'll have to wear these all the time except when sleeping or right after the bath. There's a new company called Sure Step that our PT likes because the orthotics don't limit range of motion nearly as badly. They don't go all the way up to the toes. I'll try to post pics of them after he's got 'em. She said he shouldn't need any special type of shoe and that a high top isn't probably the best b/c it's hard to get the orthotic into those type of shoes. She said just stray away from any shoe that has a very defined sole that goes way in at the arch.

Drumroll Please. . .

Because Connie gets to stay tubeless! We visited Dr. Brady today and I took along the food log of what he's been eating since Saturday and she was very impressed. She said as long as his weight stays okay (he loses less than a pound) she doesn't want the tube put back in. "We've got to strike while the iron is hot," was her comment about taking advantage of his interest right now. She said that with him drinking the whole milk and half and half as well as he is, there's no need to push any peptamen. She said for extra calories we can try adding carnation instant breakfast to his milk and another heart mom suggested putting avocado in fruit smoothies (thanks, Lisa!). I am so excited to feed him tomorrow. Dr. Brady was so excited for us. She called him a walking miracle and I shared with her our story from Easter mass and the stranger that foretold of his healing. She spent an extra 10-15 minutes in the exam room with us playing with Connie and watching him show off all his new tricks. Next time I get impatient with a doctor when they are not on time for an appointment, I'm going to remember today. She could have said that's great and left, but she took the time to kind of celebrate with me. It was a nice moment. We go back in a month and she wants the dietician to keep her updated with weight checks. After leaving there, we went down the hall to say hi to Dr. Bromberg's staff. Nurse Colleen was so excited to see him without his tube. They offered him a lollipop and we picked orange. He held on it and sucked and sucked and sucked. I was surprised (and relieved) he didn't try to bite it. On the way home we stopped by and visited all my friends at Harris Elementary (where I used to teach) because I couldn't resist the chance to show off WonderBoy! They were so pleased to see him doing so well. Finally we stopped off to see Grandma and Grandpa George for a minute before returning home for a late nap. He woke up at dinner time and ate like a champ. Greg fed him his bedtime snack and gave him his meds. I almost forgot to mention, Dr. Brady took Connie off the drug Reglan. Now he's only on three meds, 2X/day. When we go back in a month, if he's doing well, she'll take him off the Prevacid too! Unbelievable!

For those that want the boring details, here's what he ate today:
Breakfast
1 jar guava dessert mixed with cream of wheat with butter and sugar mixed in
4 oz. whole milk (the first 20 cc's was polishing off the rest of the half and half)
Lunch
1/2 jar strawberry applesauce with oatmeal
1/2 jar vegetable beef soup
2 oz. whole milk
10 tsp. mixed berry yogurt
6 tsp. whipped cream
Dinner
1/3 cup chicken noodle soup
4 bites of banana cream pie yogurt
3 oz. whole milk
Snack
1 jar peaches

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!