Update on Luke--from his mom's post

Hello everyone,Luke had his surgery on Tuesday here in Michigan with Dr. Bove and when he came out after surgery to talk to us he said it went even better than he expected!! We were of course elated, because when we talked to him that morning before surgery, we were very scared because of the complexity of it. He did the Rastelli procedure and also placed a cow jugular vein (with valve in place) for the missing pulmonary valve. This is the exact same procedure that Dr. Bove did on John and Lisa Dolan's daughter, Kara. In fact, they have been our inspiration through all of this and we greatly appreciate that John and Lisa!!!! Luke is in the ICU and still is on the ventilator, is sedated, and has 4 chest tubes, and he is being externally paced at this time. Not enough time has gone by to determine if he will need a permanent pacemaker. He is doing as well as can be expected after this all-day surgery, but still is not out of the woods yet. And if he does need a pacemaker in the end, it is a relatively minor thing when you look at the whole complex scheme of things. Thankyou so much everyone for all of your thoughts, emails and prayers!! It has meant alot to us during this very nerve-racking time! Hope this finds all of you well. I will keep you updated more as time goes by.

Please Pray For. . .

. . .a local boy named Luke who is having surgery on Tuesday, 9/30, with Dr. Bove. We met the family when we were in Michigan last fall. Luke was having surgery then too, but this one is expected to be 6.5 hours and the most involved yet for him. Please ask God to guide his doctors and nurses and to help his body adjust to the new pulmonary artery and valve that will be placed and that the repair to his AV canal is successful. Please also ask for safe travels for the family and a speedy recovery for Luke.

Connie still has a cough and has been put on azythromycin as well. Hopefully it's gone soon. He's been so funny lately. When his speech therapist came Thursday, I told her that when he's excited he tends to verbalize more and so we tried to get him all riled up. It was a hoot watching him go from one thing to the next. Tackling Mookie, pushing the exercise ball, rolling over the peanut ball, "sliding" on the floor. He was definitely showing off for her! She agrees that he's probably in a big gross motor spurt right now. He's focusing all his learning on that portion of development (which is totally normal!) and after awhile, he'll go in a different direction. We're hoping it's speech!

I-Team Investigation-Connie's in the News (indirectly)

Newschannel 5 (St. Louis, KSDK-TV) has been conducting one of their I-Team investigations for the past two months and will begin airing that investigation tonight on the 10pm (CST) news. Why is this being advertised on Connie's website, you might ask? The investigation is related to the money that the City of St. Louis paid two IT employees that it contracted from United Forensics, Greg's former employer. United Forensics, due to it's extreme mishandling of funds, terminated Connie's health care with only a couple of week's notice back in April of this year. They're really a first-rate outfit (hint of sarcasm in my voice). They told Greg on April 10 of this year that they were filing bankruptcy and starting a new company, paying hourly wages only and offering no benefits. They told Greg that our benefits would be terminated on April 30. In reality, they are still open and employees do have benefits. They just wanted to get Greg's family off the health insurance because Connie's heart condition raised the premiums of everyone in the company. The decisions made by the owners of the company hurt many people, including taxpayers and citizens of the city. Our family was affected too. If you don't live here locally, you can watch live newscasts on www.ksdk.com. Here's the article.

Doctor Visit

We saw the pediatrician today. Both Connie and Mook. She's had whatever bug I still have (going on almost three weeks for me) since last weekend and when I called his office last Thursday the nurse told me that if she still had it on Saturday to give them a call. Well, sure enough, Connie woke up with a runny nose and cough today so I went ahead and called and they had me bring them both in. I was glad I did go in because Mookie actually has "a pretty bad looking" ear and he decided to start her on azythromycin. He wrote the script for Connie but said to hold off on filling it until he for sure needed it. His ears are both fine and his symptoms are pretty mild compared to hers. Surprising since he usually gets everything and gets it worse. Maybe this means he won't have to be homebound all winter again like last year. We're keeping our fingers crossed that when we go to the cardiologist on 10/6 that he tells us Connie is okay to be in public from Oct-April. The pediatrician has us coming back for a recheck on 10/6 also and they'll both get their flu shots/mist at that time. We discussed whether or not Connie will be getting the RSV vaccine, Synagis, this year. It is a monthly shot (two actually) from Oct/Nov-Mar/April. The doctors have already been discussing it and they are sort of on the fence. They feel like his risk is much lower than it was last year, but they are keeping in mind that he has complex heart disease and is under two. They are going to write for it, but it all depends on insurance. I'm told the vaccine is close to $2000/injection and they are very stingy with who qualifies for it. Since our insurance is changing 10/1, this may complicate things since that is about the time they look for approvals. I guess we'll wait and see.

We'll keep you posted on everyone's health/upcoming appointments.

Progressing

These pics were taken recently. Whenever we say the word "pray" Connie folds his hands automatically. It's so cute. The other one is before a bike ride to pick up his sister Mookie from preschool.

Connie had two appointments this afternoon. Ms. Deb came and did PT in the afternoon this time so he could go outside in the grass and play. Normally she comes early in the morning when the grass is still wet. He walked around in the grass, walked up a slope in our front yard, played on the little climber in the backyard and practiced putting his hands in the grass to get up and then shaking them off. He should sleep well tonight!

Ms. Jenni came next and weighed him. He is up to a whopping 26 lbs. 9.5 oz.! He's gaining a pound a month and she says that is perfect for his age. She has discharged him from nutrition services since there are no concerns and he is eating and gaining well. He is back up to the 50th %ile for weight for his age. Yay!!

Our service coordinator emailed yesterday and said she wants to set up his meeting to review his IFSP. All the therapists will get together in mid-October and decide what therapies to change. So far, it sounds like we will be discontinuing OT and nutrition and PT will go to a 1X/month monitoring basis and Speech will increase. We're not sure how much they'll increase speech. Now he's getting it 1X/month and he's not saying much of anything. He did say baaaa for bath and maaaaa for mask and /d/ for all done and /b/ for blueberries. Sometimes he mimics a sound pretty well and sometimes he's just not interested.

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.