From 2 to 16

My class size has just increased. Instead of using my Early Childhood Certification to "teach" my own two everyday, I will now be teaching 16 or so five and six year olds as the new kindergarten teacher at the same school where I used to work (also where I did my student teaching and where I attended 2nd through 5th grade). I was just hired today and school starts next Wednesday! Yikes!! I'll meet the kids and parents Monday night when they come for Orientation and I'll be in meetings on Monday and Tuesday morning so it'll be interesting to see how fast I can move to get everything in place by Wednesday morning when the kids arrive at 7:45.

Connie's doing well. His back up glasses arrived and they need to be made smaller. Not sure what we'll do. I think I'll just get some crazy glue for his first set to get that pesky earpiece to stay on.

Mookie starts preschool two mornings a week beginning on Aug. 19th so our little family is about to go through some pretty big changes. Please pray that we are more tender and patient with one another during this time of transition and that we will feel the Lord giving us strength and easing our anxieties.

Erin
p.s. If you are free Mon or Tues early afternoon, I'd love the help in my classroom. Call me!

Big Deal to Us!

I just wanted to put a quick post up about how last night was the first time EVER that Connie did not cry, squirm, scream, fuss, writhe or throw a fit about getting his teeth brushed before bed. He opened up and let me brush as long as I wanted. No gagging. No fighting. Sometimes it's the little things that can mean the most. With all we've been through these last 9 months it's starting to finally feel like he's on the verge of being a 'regular' kid.

His OT will be so excited to hear this news, along with the news of the progress he made eating over the weekend and yesterday. He's been eating more table food and less purees. Over the last few days, some of the foods he's eaten that haven't been mashed or blended include: pork tenderloin, cheese, scrambled eggs, green pepper, strawberries, cheez-its, a chunky ice cream treat, dry cereal, pop tarts, peas, bologna and a few other things I can't remember right now. After he's done eating, he usually sticks around close to the table to cruise around it while we are finishing up. He makes a lap around and then stops to ask Greg or I for a bite (and he actually is making a "B" sound sometimes) and then finishes that lap around the table and when he gets to us again asks for another bite. It's pretty cute.

His glasses need to get repaired again, but I'm not taking them back in until his back-up pair arrive. This time, the little loop that goes behind his ear keeps coming off. I took them in and they said they don't want to glue it and they'd send them back in, but I'm waiting. I don't want him without them for another whole week!

Recent Video

I made a little montage of a few recent pics and a video of Connie's ever-growing abilities. He's doing so well and we continue to praise God every day for this gift.

Make photo slide shows at www.OneTrueMedia.com

Okay, so it wasn't teething

Conway was in again today to see the pediatrician because he has had a rash on his trunk since Tuesday afternoon. After one glance, our pediatrician said immediately, "That looks like a classic case of Roseola." The definition is: Age 6 months to three years, presence of a fine pink rash, mainly on the trunk, fever during the preceeding 2 to 4 days that cleared within 24 hours before the rash appeared, child only mildly ill during the time with the fever, child acting fine now. She said it's actually more likely to be an enterel virus but they don't all have names. She said the rash shouldn't be causing him to itch or anything and he shouldn't be contagious as long as he has no fever. So, turns out it was a virus after all. His eating has picked back up some today so hopefully that's all it was.

Chalk it up to Teething

The doctor never called yesterday to say that Connie's strep test had come back and since his lingering fever never goes above 99 or 100 and the fact that he's irritable and biting on his fingers, I think it's safe to assume that this is teething related. He's still pretty miserable and his eating has really stalled.

There was an article in the paper today about Camp Rhythm, a summer camp for heart kids that is put on by St. Louis Children's Hospital. I've heard a lot about it through our local support group and have heard the parents and kids alike rave about it. Connie will be able to go be a mini-camper when he's five and once he's eight, if he chooses, he can do the overnight, week-long camp. Here's the link if you want to see the pics and read the article.

Under the Weather Again

Conway started acting a bit off Thursday afternoon. By Friday night he had a fever of almost 101. While that's not outrageous, it doesn't take much to scare us with our Connie. He was gagging and spitting up saliva too. We think he must have drainage or something in the back of his throat. Dr. Davis wanted to see him during his Saturday office hours this morning so we went in for a strep culture and the once over. The rapid screen came back negative but he's sending it off to the lab anyway for the definite answer (it'll be back Monday). We left with a two day supply of Cefexime (sp?), an antibiotic. He felt pretty warm tonight but tylenol seemed to get him comfortable.

Update on Connie's heart friend: He had the full surgical repair is recovering very well so far. Thank you for your prayers!

Please Pray for a "Heart Buddy"

A local boy who's family we 'met' through the Heart to Heart group is getting ready to have his Double Switch at Stanford in CA. He has the same defects as Connie. His testing day is today, a pre-op cath tomorrow and the big day is Friday. Please tuck Grant (about 11 months old) and his family in your prayers as they deal with being away from home and all the feelings associated with handing a little, happy boy over to a medical team and trusting in God to guide everyone involved.

The Specs are In

Connie is sporting his new glasses now (when I am with him distracting him, otherwise, he goes straight for them).
Edited to add that on Day 2 we took them back in since they were slipping down so badly and once they trimmed .5 inch off each side he has been happily wearing them and doing wonderfully!
Day 7 we are taking them back in tomorrow to see about getting one side fixed. Connie broke them today.

First Trip to the Zoo

We went to the zoo this morning. We tried to get there early before the humidity got bad, but it was still pretty miserable. Connie did well, but was thoroughly disinterested in the animals for the most part. The water bottle he was drinking from was way cooler. Here are a couple of pics we took today.

Weight Check/OT Update

Connie's OT came this morning and he showed off by eating diced green beans, diced pears, several bites of chewy peanut butter granola bar, 6 oz of a yogurt smoothie, 1.25 oz of pureed chicken and 1 jar of pureed soup. He pretty much eats anything you give him and is handling it all very well. If he puts too much in he'll spit some out, but for the most part is not gagging much, if at all, anymore. Over the past couple of weeks he's eaten things like drumstick ice cream cones, cupcakes with icing, cookies, rice, refried beans, guacamole, salsa, nutrigrain bars, crackers, tortilla chips, dum dum lollipops and fitz's strawberry soda. Everything in moderation, right? Seriously, we've been at lots of parties and celebrations so he's gotten to sample lots of things just so we could kind of see what he'd do with them. Very encouraging. Ms. Carla is even talking about not needing to come much anymore and by the fall he'll either be on monthly visits or no visits at all! Same with Ms. Jenni, the dietician. She came today too and his weight is up almost 2 lbs. in less than a month. He's perfectly proportioned, in the 50%ile for height, weight, weight for age and weight for height. Looking at him and at Mary Kathleen, I think he's the size he would be if he didn't have a heart condition and a year like he has had. His new weight is 24 lbs. 9.6 oz. Yay, Connie!

Cute Pics

Connie watching the parade, riding rides at the 4th of July Carnival and eating a Cookie Monster Cupcake at his cousin Liam's 1st Birthday party! What a big weekend!

Speech

Connie's First Steps Service Coordinator came out today to rewrite (update) his plan. He'll be receiving speech services one time per month just to stay on top of his progress. He still is saying no words although a few times it has sounded like a real word. He doesn't mimic words. When we ask him to repeat us, he just grins and laughs at us. Hopefully by the end of the month we'll meet our new Speech Pathologist.

On the glasses front, we're going to look for frames on Saturday morning. I think it's going to be tough because most places don't have much selection or even carry infant/toddler sized frames. If they do, they don't accept his insurance! So, if any of you readers know of places that carry a large selection of small child frames you might save us some time by passing on that info!

Happy Fourth! God Bless America. Just think how blessed we are that Connie was born in the USA and was privileged enough to be able to receive the best medical care in the world to correct his defects.

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.