Mary Kathleen Medical Update

This one's not about Conway but about big sister, Mookie. Yesterday was her consultation with the plastic surgeon who will be removing her congenital nevus birthmark (mole). If you remember, the spot is on the back of her head. Compared to what her brother has been through, it is really no biggie, but surgery is surgery and she is much older and more aware than he was. She will need a general anesthesia. The good news is that she is getting dissolving stitches and they will try to sew it back up to where hair follicles will sort of line up. Unless there is a great deal of pull on the incision causing a wide scar, it shouldn't be noticeable. It's also a plus that she's a girl and not a boy with short hair. Her surgery should be outpatient and is scheduled for February 5. Like the time period before Connie's surgery, it is important that she not be ill leading up to the procedure. We will do our best to keep her well. May be difficult now that it's cold and flu season and she's in preschool this year. Hopefully we won't have to pull her out in the weeks ahead. They will send away the tissue for a biopsy and we are praying for a benign result. If it is malignant, they will likely have to go back in.

Please keep her in your prayers that any bugs stay away and that she isn't too fearful. We'll keep you updated.

We have too many blessings to count and it's times like yesterday where you remember them more easily than others. As we were leaving the hospital, we ran into another teacher that works in the same district (but different school). She was just told that her baby boy has cancer of the retina! I was having kind of a pity party before hearing that and it sure put things in perspective for me.

Merry Christmas Everyone!

Merry Christmas

We couldn't choose just one photo to send in our Christmas card this year so we made a video. From our clan to yours, Merry Christmas

Make photo slide shows at www.OneTrueMedia.com

Sniffles and Santa

Connie had the sniffles earlier this week. He's acting fine, but for some reason, he doesn't seem to require sleep anymore! He's been quite the night owl so we're getting a bit worn down. He's not miserable and crying and sick or anything when he's up. He just wants to be up.

Connie and Mookie visited Santa this evening and took part in a Parents as Teachers Group Meeting.

Here are some pics from the event. He's into "hiding". Tonight I got the coats out of the hall closet and started helping Mook with hers and we looked up and didn't see him. I said, "Where's Connie?" and the door to the closet slowly slid open! Little Goofball!

Happy Thanksgiving!

Just wanted to make a quick post to let everyone know how thankful we are for everyone's prayers and support this past year or so with Connie. What a difference a year makes!! We have been so blessed and our Lord is so good.

He's your typical almost 21 month old. He's into EVERYTHING! He barely plays with anything anymore. He's at a horrible stage where he just likes to "get everything out!" I don't know how many times a day we pick up every piece of pretend food from the kitchen play set or barrettes and ponytail holders that he empties from the bathroom drawers. His new favorite pastimes (besides making messes) are jumping on furniture and trying to disrupt any sort of typing or dishwasher loading that any grown-up is doing. He's impossible--and every minute of it is pretty wonderful actually!

He's starting to talk finally! He's saying Belle (his first genuine word). That's our dog's name. He's also saying uh-oh and bye and he's really good at repeating letter sounds. We have a fridge magnet game that says letter sounds in a sing songy way and he makes the sound after it tells him. It's pretty cute. Last night he asked for a bite of my food and the word "bite" was totally recognizable. Usually he just puts his fingers together to sign "more" whenever he wants a bite of what you're eating. I was so proud that he used a word instead! He says "hi" and a form of "hello". "Woof" is another favorite. He's doing this quirky thing now though at bed/naptimes. Whenever you ask him if he's ready to get some sleepydoos he signs that he wants a drink. I don't know what that's all about, but we oblige and then he goes down peacefully. No upcoming appts. to report about. We accidentally missed his 6 month neurology follow-up but I'm pretty sure they were just going to clear him from their service anyway b/c he's eating and that was really their only big concern at the last appt.

Enjoy the holiday! I can't believe it's already here. Seems like summer just ended.

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:)

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.

Never a Dull Moment

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

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

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

We've Been Discharged

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

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

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

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

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

We're In the Hospital

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

Today was Weigh-In Day

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

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

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

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