Secure Once Again

The new replacement Mr. Monks came today. I washed it and presented it to Connie right before bedtime and he was so thrilled. No, he didn't speak it's name as his first word like Trixie did in the book Knuffle Bunny, but he did give the monkey love pats and rubbed it on his face and looked at me and Grandma as if to say, "Is it really him? Is this my Monkers?" At least Mommy feels better now. He didn't seem traumatized in the least by the loss of his security blanket, which I guess is a small miracle in and of itself. I think I was more upset about the ordeal than he. I was the same way when Mary Kathleen lost her blue bunny lovey at Harris' 2007 Breakfast with Santa. I went back there two times after returning home before finally finding him in an almost empty parking lot, soaking wet from the rain and with dirt and tire tracks on him from the cars running him over. That had a happy ending too, as he is still with our family. We did invest in a back-up blue bunny at that time (it was a wake up call for us) and it's all worked out!

OT came this week (we're on an every other week schedule now in case I haven't mentioned that previously). She said he's doing phenomenally well and when we have our meeting next month to review his IFSP (plan) we'll probably stop OT services! The dietician is also coming next week and she said, after reading how well he's eating, that as long as the doctors are not concerned with his weight then she'll probably discharge him from nutrition services as well! Then there's PT, which will probably not be around for long either since he's walking now. I think she told us that she'd see him through getting steady and walking on several types of surfaces, etc. before discontinuing therapy. Next week we're going out on the grass to walk in the yard while she's here. We're still trying to get him to utter some words or phrases or anything at all, but it'll come with time. They told us that kids who don't eat solids (and he didn't eat until 8 months after most babies start) are behind in speech because they have weak oral motor skills. Once they've been eating for awhile and strengthen those muscles, the speech comes along too. He's doing a great job communicating and signs what he wants or tells you with motions or his eyes. His new favorite thing to do is bring us a book to read to him. His favorite is Dr. Seuss' Foot Book. He also is copying everything he sees his big sister doing. Greg made a little corner in the living room the "reading corner" and he put her books in a basket and a little rocking chair next to the books. The books that are in that basket are books that we've read aloud and recorded so that they can hear us read to them even when one of us is not here (like when Mommy's at work). Now he goes over and gets a book, climbs up in the rocker and turns the pages. It's hilarious, because sometimes he'll have the book upside down. I guess Mommy better get busy teaching concepts of print to this little guy! His other favorite past time is wrestling. He's so rough! If you sit on the floor he gets this look on his face that says, "Heeeeeere I come!" Then he just topples you over and climbs all over you and pushes against you. He does the same thing to Mook in the wagon. He'll stand up and put his head down and go straight for her. They think it is hilarious, but given that he's only about four pounds lighter, he knocks her down in one easy motion!

Gone for Good

Mr. Monks that is. Connie's light brown monkey lovey (woobie, blankie, sleep aid, comfort object, etc.) is missing. We went to the Art Fair tonight with the kids and when we got home, Monkers was nowhere to be found! I know for a fact that Connie had him when we started to walk toward the car, so he's probably all alone on the streets of Clayton right now wondering why he's not snuggling and cuddling with Connie tonight at home in a nice, warm bed:( I guess Connie will have to get reacquainted with "Blue Bunny Elephant" (the elephant version of Mookie's Blue Bunny) that he had back during his surgery and early recovery. We had to replace the elephant with the monkey because Connie kept chewing and gagging on the trunk of the elephant back when he had the NG tube and it was causing him to throw up every time we put him to bed. Now that he's without the NG, it should be safe to resume chewing on the trunk if that's what he wants to do. I just hope the kid will sleep tonight without his "bestest friend."

They had face painting at the fair and Mookie's dream came true when the lady made her into a real life "Bunny Girl." Oh, and she's told us that she isn't Mookie anymore. Her new name,which gets longer each day,is Bunny Rabbit Ruby Girl. She's even told this to her preschool teacher! As if Mary Kathleen isn't long enough to write at the top of her papers!

One Year Ago Today. . .

. . .we handed our healthy (looking and acting) son over for a daunting open heart surgery.
. . .we completely put our faith in God. That His will and timing were perfect.
. . .we began a journey of self-discovery. We learned to "dig deep".
. . .we gained a support system that lifted us up and carried us when we needed it.
. . .we felt real love from friends and family.
. . .we got an education in real life.

August 28, 2007 is a day we will never, ever forget. Ever since we got the date for surgery, the countdown began. We had flights and testing appointments and rooms booked, all based on that date. Many of you followed his journey from birth, but a lot of folks came aboard on that day and have been with us since. In the two months following his surgery, his old carepage had over 42,000 visitors! We wanted to take a second on this day of reflection to thank everyone for your prayers, messages of support, financial assistance and other ways you showed us Christ's love over this past year. We couldn't have made it through the rough times of recovery without you all.
(If you click on the picture in this post, you can read the words on the postcard we sent to all our prayer warriors. If you'd like a postcard and haven't received one yet, email me and we'll get one to you.)

Working Mother Guilt

Well, not really. But it was like having salt rubbed in an open wound when I came home from my first official day at work to find Connie stand up unassisted in the middle of the room and take several steps toward me--for the first time EVER! Greg simply said, "Stand up, Connie." We took a couple little movies so you can see for yourself. He is amazing in that he falls after a few steps and gets right back up over and over again. That has been a theme all along for this little guy. He'll have a setback and then keeps on chuggin'. I was greeted my second day with news of his remarkable appetite and sure enough, it has been one week with NO special food for him. We've been giving him exactly what we're eating, cut in small, but not abnormally small, pieces. He's simply chowing down. And doing it all himself. He does occasionally hand me his cup as if to say, "I want you to hold my cup while I drink" and I usually oblige:) He's even asking for more now. Last night he had IMO's pizza and wanted more and he asked Greg for more of those orange peanut butter crackers after he'd already eaten 4 one day! He's so remarkable. So yeah, if you're wondering how the kids are adjusting to Daddy during the day, I'd say, "VERY WELL!"

Greg took him to his well baby visit (15-18 month visit) yesterday and the pediatrician is thrilled with his progress. He had a whole list of questions and of course the only ones he's not up to par on are walking and talking. You'll see in the video that it's just a matter of time before we're on the exclusive walking thing and with the talking, he's not concerned because he said his receptive language is so good. He understands everything we tell him and follows directions well (except for the word NO, haha). He is in the 75% for height and 25% for weight and 50% for head circumference. Dr. Davis said he's perfect. He took one look at Greg(6 foot 6 and 230 lbs.) and said he'll be built like his daddy and sister. Long and lean. Greg asked if he should beef up his calories and he said, "No, he's fine. He's just a skinny kid." That was so reassuring. We'll see if Dr. Bromberg agrees when we go for our cardiology visit in October. But for now, we'll take it! He got his DPT shot and only cried for a second. The kids will go back in October for their flu shots.

After the pediatrician, Greg brought the kids by my school because my class was at Art so I had a plan time. Everyone at school commented on how he looked so good in person, even better than online:)

Make an on-line slideshow at www.OneTrueMedia.com

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.