Good News and Bad News

The good news is Connie can no longer be called "four eyes." He was cleared from wearing glasses today. The eye doctor said that he is right on the borderline of needing them and he told Greg that if you asked twenty-five doctors, half would say he should wear them and half would say don't worry about it. He is not cross-eyed. He is not bumping into things. These are symptoms he told Greg to look for as reasons to come back in for a check-up. Otherwise, they'll wait to check him again until next June! I knew it. God is correcting his vision and we are so thankful.

The bad news is that he is still quite fussy. He was high maintenance all day and didn't even enjoy PT the way he usually does. Ms. Deb even noted that his endurance was down some from his normal level. He seems quite tired (hmmm. Could that be because he was up from 12am on?) and yet is having trouble sleeping. He had two more bouts of diarrhea today but his appetite did pick up some.

The other bad news is that we're still in limbo with the vaccine for RSV, Synagis. I got two calls tonight from our home health care company that sends the nurse to administer the injections asking me to get involved with the insurance company. They said that while they hate to have to do it, sometimes getting the parents to join the fight is the only way to get an answer from them in a more timely fashion. They have tried pleading with Cigna all about how he is a high risk kiddo and needs his dose and to please put a rush on the review, but it is going nowhere. So tomorrow, I'll be calling Cigna back yet again. I almost have the 800 number memorized I've had to call it so much already this fall! I will say this much; their automated phone system is much more user-friendly than Anthem's.

Another Bug

Connie woke up in the wee hours of the morning today absolutely on fire. I have never felt him so hot. The reading on the thermometer that I took under his arm was 102.22. His face and arms were bright red and you could feel the heat through his pajamas. He shows no other symptoms other than poor appetite and fussiness. I called the pediatrician's exchange and the nurses from Children's said that unless he was having high fevers for more than 72 hours or unless it reached 105, then he was probably just fighting some sort of virus. I think we found out tonight what sort of virus it is. He had a VERY loose stool so there must be something enteral going on. That and I think his throat must be sore because yogurt and milk or water are just about the only things we have been able to get in him. Today his eyes were starting to do that sunken in thing but they said as long as he has one wet diaper every 12 hours he's not dehydrated. For now we're just treating him with tylenol. His fever did break after about two hours last night because he woke up again in a pool of sweat. After some clean sheets and snuggling with Mommy (he was mad at Daddy for taking his temp again) he went back to sleep until 5:45. Man, this daylight savings thing is killing us with their early risings. I'm up anyway getting ready for work. But the getting ready for work is much harder when they are awake! He didn't have a fever all day today. I gave him some more tylenol before bed since fevers tend to come back in the evening.

He's been approved for Synagis and was supposed to get his November shots on Monday, but all of a sudden the insurance company is questioning whether they'll cover the home health care nurse to actually give the shot. This is getting so ridiculous. Ever since we switched to Cigna (their premium plan, mind you), we've had nothing but headaches with insurance. First they wouldn't cover his new dose of Enalapril b/c they said he shouldn't need that much. Then they wouldn't cover Mary Kathleen's last dermatology appointment. Then the trouble with getting the Synagis vaccine for RSV and the latest today was a bill from the ped for his last two appointments and the follow up on Mookie's ears for a total of $750 that they refused to pay! I've gotten it all worked out, it is just really time consuming and frustrating to get bills for every single medical thing we've had the last two months.

Connie is going to the eye doctor tomorrow morning to try and figure out why he won't wear glasses anymore. I think it is because God has healed his eyesight and he can't see anymore looking through the lenses. I guess we'll find out tomorrow. I'm pretty sure it's not a comfort thing b/c we had the glasses adjusted again at the optometrist and they fit well.

Today we heard lots and lots of talking. Now that he's gotten this gross motor thing down I think he's really going to take off with speech. He's been calling, "Beeeellle" (our dog) and whenever the phone rings he says, "Heh oh" and then when he plays with the phone he says, "Haaaah" and "Baaah". He's pretty mad that we've packed up half the toys and there is virtually nothing left upstairs to play with. We haven't been playing much downstairs either b/c Greg is still painting the shelves that line the back wall. We've put our house on the market (bad time, we know). It is a good time to buy though and we've got our eye on a bigger house that's at a great price. We don't have to move, we'd just like to take advantage of the opportunity to get a lot more house for not a lot more money. Please keep us in your thoughts and prayers as we try to keep the house in "show" condition (not likely) with a dog and two small children. I'm worried about getting a call to leave when Connie's just gone down for a nap and all of the other inconveniences that go along with selling and buying a house.

I guess that's all for now. I'll try to update tomorrow after his eye appointment and PT appointment. Sooner if anything further develops with this fever situation.

Our Little Treat!

Connie made his debut as a Monkey and Mookie recycled last year's Bunny costume (how could she be anything else?) for the big trick-or-treating fun on Halloween. He LOVED going up to the front doors and meeting strangers. If the house was decorated, he was entranced. The scarier the house, the more sound effects, the crazier the scene, the more he loved it. It was tricky though because he's pretty independent now and let's just say if he was a dog you would have to say, "Does not walk well on leash." He doesn't want to hold your hand and he's not really consistent with following directions if he doesn't like what you are saying! So, he took turns being carried, spent some time in the stroller and did a bit of walking.

Here are a couple of pics.

Halloween Party Fun

Connie's Great Aunt Barb hosted her annual Halloween Party this afternoon and Connie was such a good boy (as usual)! The kids had fun painting pumpkins, playing pin the nose on the jack-o-lantern, eating apples off a string and playing a dress-up relay game. He showed off his ever-growing motor skills on the playground by navigating the equipment like a pro! Grandma's iced brownies were a hit with him too. I don't think I've ever seen him open so wide.
He wasn't too sure about the painting thing. I think he was a little concerned about wearing a trash bag. I know, I know. I can't believe they are sharing food either (germs--eek!)! It does make for a cute pic though.

Connie is Cooperating

He's getting more and more cooperative with every breathing treatment. I snapped a pic last night of him just after his treatment ended. He was also helping brush his teeth! Never thought we'd see that day.

Connie's Got Skills!

According to the DAY-C test, Conway scored at a 19 month level for physical development and his adaptive behavior and self-help skills are at an 18 month level!! He's right where he should be--whew!

It was so fun to see all the therapists in one room today. They were just in awe at our little man. He spent equal amounts of time making the rounds to everyone interacting on an individual basis and showing off his tricks and trying to ham it up for everyone. At one point, I told him to show them what he does when Mommy tries to change his pants and he got down on his back and started scooting backwards across the floor, just like he does during diaper changes. He laughed hysterically the whole time he was doing it, knowing he was making them laugh. It was so cute. That definitely convinced anyone who may have had a doubt that his receptive language skills are perfectly fine! He was so busy that for awhile his lips were noticeably blue. It was the first time I had ever seen that on him so I asked the rest of the team what they thought and they all agreed. I lost it. I started crying right there in front of them (thankfully only two of them were still here!) because I read a lot about heart kids and how when they are older, many of them have difficulty keeping up with peers at play and struggle in normal gym classes, etc. I guess I thought that Connie wouldn't be one of those heart kids and that was a realization for me that maybe he will be. I guess I was just in a celebration mode and reflecting on what a miracle he is and how far he's come in the last year and then to be looking at blue lips. . .it sort of took the wind out of my sails. I'm sure it's just because he's got some yucky lungs right now (thus the breathing treatments) so it makes sense that his O2 levels might be low during an illness. Still it's not pleasant to think about. I'm going to try not to dwell and just take it one day at a time. I'll probably let the doctor know about it tomorrow, but I'm sure they'll say just watch and keep up with the treatments and keep them posted. Stay tuned. . .

Never a Dull Moment

Connie had a runny nose all day yesterday and started developing a cough as well. He got up at 1am and didn't go back to sleep until 4:30am! We tried everything. He and I ended up watching some Pinky Dinky Doo on the computer and vegging on the couch for awhile. I gave him some graham crackers and raisins and ice water and you would have thought he hadn't eaten in a month. When I unzipped his pajamas to take his temperature under his arm, I noticed some "pulling"--drawing in around his ribs with each breath. I also felt like his breathing was labored. He was happy but couldn't sleep and it seemed like being upright was easier for him to breathe. He was very "junky" sounding. To make a long story short, Greg took him to the pediatrician this afternoon and we now have a nebulizer and Connie is on Albuterol and Pulmocort. He got his first breathing treatment in the doctor's office and immediately had relief and had clearer sounding lungs. Granted, he screamed through the entire treatment, which takes close to 10 minutes to give. At his evening treatment, we used a different head on the machine. Instead of the mask, we used a straw-like attachment and it was received much better. Say some prayers that he'll cooperate for these treatments so that he'll breathe easier. Also, tuck my mother in your prayers as she is recovering from pneumonia. She should be discharged from the hospital sometime tomorrow after a four day stay.

His IFSP meeting is tomorrow afternoon. It will be such a relief to hear again how great he's doing, but it will be bittersweet as it may be the last time we'll see some of his therapists. We are so thankful and feel so blessed to have had such wonderful individuals in our life the last year.

Mary Kathleen. . .continued

So we went down to Children's yesterday afternoon and saw Dr. Bayliss. In a nutshell, she told us that she recommends removal of the congenital nevus birthmark when it is on a place such as the scalp because it is difficult to see changes that could indicate concern. She said if it were on her arm she'd say, "Let's just watch it." But because of where it is and the fact that moles can sometimes be malignant, she recommends we just have it removed. She said sometime in the next year so I'll try to do it around a time when I can be off. She'll have to have a general anesthesia but it is an outpatient surgery. We got a list of plastic surgeons that Dr. Bayliss recommends and we will call them and start the process of setting something up. She said that these can tend to get pretty deep, so it is possible that some cells will be left, but she doesn't want to mess around with it and just biopsy it here and there. She said it will leave a scar (the least of my worries with Connie; funny how your perspective changes) but hopefully her hair will grow over it. I guess she'll never be able to wear a really short do when she's grown up.

Mary Kathleen Update

She was seen by our family dermatologist today about her birthmark. This is about the third or fourth time she's been seen for it, but this past summer we were told we were just going to "watch" it and check again when she's about five. Now it has started bleeding and when Greg took her in today, the doctor feels that it is getting bumpier (almost wartlike) and while it isn't an "emergency situation", it is something that she wants a pediatric dermatologist to look at. She referred us to Dr. Susan Bayliss at Children's. When Greg called to make an appointment, they first said that the first opening was mid-January. Greg told her that she'd be getting Mary Kathleen's records and they said they had a cancellation for this Thursday. Dr. Sanchez said that Dr. Bayliss may want to biopsy the spot or remove it altogether. I guess we'll find out Thursday. That will make five doctor appointments in one week between her and her brother!! Ugh.

Stay tuned. . .

Cardiology Update

Exhale. . .

The big appointment was today and Connie was near perfect, as usual. I'll quickly go over the main points and then talk about how cute he was and give a little more detail.

His sats were 99!! BP was 100. He was 25.9 lbs. and 33.5 inches tall. I have a feeling his murmur is louder b/c this is the first time I've seen them listen to it with the stethoscope not even touching his chest all the way. They held it at a 45 degree angle. Dr. Bromberg said, "It's very noisy in there." It's hard to tell if all the noise is from the harmless residual VSD's or from the leaky valves. His mitral, pulmonary and aortic valves are leaking. Based on the echo it looks to be mild/moderate on all of them. The right ventricle is pumping at higher pressure due to the pulmonary obstruction (narrowing of his conduit). His pacemaker is functioning perfectly and we don't have to go back for 9 months!!

Basically, there isn't really an explanation for why Connie is doing better than he was after we returned from Michigan a year ago. Although he still has issues with his heart, he is TOLERATING these issues phenomenally well and our doctor sees no reason why if he's doing so well now that he won't be doing just as well 10 or 20 years from now with the valves he's got. Mild/moderate leaks can be withstood for some time so that is what we are hoping for and EXPECTING!!

He was such a good boy. I'm not kidding. After getting two flu shots this morning, it's a wonder he would even enter another doctor's office this afternoon. This kid was a little upset at being torn away from the little tykes crazy coupe in the waiting room, but after he got over that, he was the poster child for good behavior during long appointments. We were there two hours and 45 minutes and it didn't even include an x-ray or ekg! First he got height and weight. Then we went in and he let Colleen listen to him after Kelly oooooed and ahhhhhhd for a bit. Colleen took his bp and hooked the sat monitor up and he just gave her his finger like he was a pro. He didn't pull any of this off or mess with it. Then she had to place the stickers for his pacemaker check and hook up the wiring. He helped me hold the "mouse" over his belly the whole time and he just smiled and showed off his good behavior for the doctor. Then Dr. Bromberg listened himself and asked questions and watched him walk around and play. Because he weighs more now, we are going up a bit on the dosage of his two meds. Dr. Bromberg told him to get worn out so he'd lay nice and still for his "pictures" (echo). You would not believe it, but this kid lay still with his arms up over his head, twirling his hair, for about 40 minutes. He even let her do the subcostal view without pitching a fit like he normally does. I asked her if most 18 month old boys behave this way for their echo and she said NEVER! It took forever for Dr. Bromberg to review the echo so Connie walked up and down the long hallway flirting and showing off for Colleen. He fell and got a rug burn on his forehead so a sucker quickly cheered him up. Good thing he was still shirtless b/c he was a sticky mess by the time he was through!

We've got to go get labs done-yucky blood draw:( but other than that we are done for 9 months. He said he was tempted to let him go a year between appts., but for now he feels better doing it in 9 months. We'll still use the home machine to send pacemaker checks into the office every three months.

Thanks for keeping him in your prayers today. Since we have to have drama at every turn, I thought I'd mention that Mookie is going back to the dermatologist tomorrow morning because her birthmark has been scabbing and bleeding. Greg is freaked out that it is melanoma. So much for just checking it again when she's five! Please pray that nothing invasive has to be done, or that nothing major is found. It is on the back of her head about two inches above her hairline.

Looking Back

This time last year we were scrambling to get home from Michigan. Connie and I were in Detroit's airport and perfect strangers were helping me to usE the gravity bags to tube feed him. Security personnel were so kind as they patted him down since he couldn't go through the metal detectors with his new pacemaker. Flight attendants and fellow passengers listened to his story and promised to pray for him.

It's hard to believe it. It feels like sooooo long ago and yet, the memories are so vivid. Pumping in the bathroom at the airport while I tried to keep his car seat moving and giving him stimulation at all times, him throwing up five minutes before we were to board and needing a complete change.

We're so grateful to everyone who has come along on this journey with us. Your prayers and support have been so needed and answered. May God bless you all. Our boy is doing phenomenally well. This has been such an uncertain year and while nothing is absolutely certain, we feel such a sense of peace about Connie's health and life and we have seen the hand of God so vividly in his story.

October 5, 2007 was the real beginning to a long road to recovery for Connie. May October 5, 2008 mark for him the beginning of "just being a kid" for him. The hard work and therapies are just about complete and hopefully it will be a time for just living and enjoying life!!

We go tomorrow for flu shots, a follow up with the pediatrician for their colds and our big trip to the cardiologist for all the testing to see what's really going on in terms of his heart. Please pray that we get good news tomorrow and no discussion of "severe" or "surgery" or "failure" comes up. No matter how great a child looks, I don't think heart parents ever really know what will be said and that fear is always there that we'll be told it's time for some sort of intervention. We have to keep letting it go and putting it in God's hands. We know His plan is best.

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:)

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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.

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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.