Re-eval and prayer request

We had Connie's re-eval yesterday to determine what therapy needs exist for the next six months. Carey (coordinator), Deb (PT) and Chris (SLP) all attended. Of course they fussed over him because he's so darn cute. He graced them all with his piano playing abilities and showed off his new "Melmo" (Elmo) books he had just gotten from Barnes and Noble earlier in the day.

PT: Deb is impressed with his ability to walk down the slope of the front yard and to go from grass to concrete surfaces and down different levels and small steps. She is still concerned about his ankle strength and wants to continue getting better at tip-toeing. He is going to get new orthotics but they will be the same kind (Sure Steps) as the one's he's in now. I'm so bummed because I desperately want him to wear those cute navy blue stride rite fisherman sandals this summer, but I guess we'll wait one more year :( He'll look darling in his new nike kicks though. We're decreasing his PT services to one hour every other month! We'll have to get our Ms. Deb fix at church, I guess!
Speech: Chris says Connie is making progress every week. He is still leaving off word endings and initial consonants so his intelligibility is rather poor. We are trying to use the phrase, "Use your words" with him to get him to stop relying on signs and gestures to get his point across. It will be hard for us to do this because we just know what he means and he doesn't have to use speech. It will be good for him to be around new people and kids when he starts "school" next week and maybe he'll pick up some new words and good speech habits. She said since he is so smart we are going to have to sabotage him and "ruffle his feathers" a bit to get him to verbalize more. She is going to try to see him a few extra times at school and try to see if a new environment is motivating for him. She'll keep coming to the house 1X/week. We asked about increasing, since the ped. recommended it, but since he's showing improvement, it wouldn't be covered at this point.

The team will reconvene in late Aug. or early Sep. for the next re-eval and to start planning the transition to services from the local school district. Then they will have us sign releases to communicate with the early childhood people in Fort Zumwalt and then just before he turns three FZ will conduct testing to see what he qualifies for. He may qualify for speech still, which could mean that he would be attending United Services for his therapy and receiving it during preschool setting. It may mean that he will go there for preschool full-time, but we're not sure yet what his needs will be at that time. If that were the case, he would start right when he turns three rather than waiting until the following school year, the '10-'11 school year like we would have done if we put him in Mary Kathleen's preschool. That's still some time away, but it really hit me when they brought it up yesterday. I guess it will be here before we know it.

Now that you've gotten the latest on WonderBoy, I want to ask that you pray for a fellow L-TGA kiddo who will be undergoing his big double switch operation like Connie had next Thursday. He lives in London, UK and his name is Oscar. He is a lot older than Connie was when he had it done (he's three now) and his mom is worried about the emotional trauma involved. He's saying he doesn't want to have it done and asking why it has to be done. Please pray that God gives his mom Laura the right answers for her little boy and that He gives her peace to know she's made the right decision. We know all too well the feeling of taking a "healthy" boy in for surgery and the questioning and doubt that looms with such an action. I'll post updates as soon as I hear how he's doing.

Just Back From the ER

with Connie. We left the house at 8pm and just made it home at 12:44am! Not too long after dinner the kids went out back to look for rainbows. On his way back in the house, he tripped on the threshold and hit his head on the door frame. He cried pretty hard but I just figured it hurt. I didn't see any marks right away. I sat him in his seat for some strawberries and when I finished slicing them, I saw the blood on his eyelid. He had hit that orbital bone and split open his eyelid right above his right eye in the corner nearest the temple. I called Dr. Davis' exchange and the nurses from Children's hospital called back. He was acting fine and it had stopped bleeding. It isn't very big at all and they asked all the questions that they ask for cuts and also the questions for head trauma. All checked out great except for one. When she heard that the cut was on the eyelid she said that the guidelines they have are to go to the ER. Doesn't even warrant a call to the doctor, it's supposed to be a trip in. Ugh. Greg and I really didn't think they'd do anything for it, but I was kind of glad to get a second opinion. We were advised to go into St. John's since they already have a record of him there and both his main doctors have privileges there. They were packed. There were kids all over the place who had obviously been puking because they were carrying around buckets with them. They were nice enough to let us wait in a little storage room that patients don't usually go in so that we could hopefully prevent Connie from getting any bugs. They didn't have any rooms open up until after 11pm. It was a long wait and lots of entertaining. It is exhausting trying to entertain a two year old when you don't want him to touch anything! He climbed up into his stroller and then jumped down about a gazillion times then when we finally got an exam room he jumped up and down on the bed about a gazillion times. He definitely didn't act like he needed to be there, but we had to follow the "protocol". Finally we got checked out and we were told that sometimes less is more and in the case of a "deep superficial cut" like he has, it is better to leave it alone. We will wash it daily with soap and water and apply an antibiotic ointment that is safe to get in the eyes. Other than that, it should heal nicely and the only time we'll be able to notice it in the future is that it may stay white when the rest of his face tans.

I'm off to bed. Hopefully he'll let me sleep in tomorrow (I mean. . .today)!

2 Year Check-up

Conway went to Dr. Davis for his two year check-up today. I waited a few weeks after his birthday so I could take him during my spring break. He weighed in at 26 lbs. 4 oz. which puts him barely at the 25th percentile. Looks like we'll be keeping the whole milk for another year and trying to add in some good calories where ever we can. He loves "nog nog" (carnation instant breakfast chocolate flavor) added to his milk so that's one snack we'll be trying to make sure he has everyday. He's 34.5 inches tall which is in the 60th percentile for height. I'm not too worried considering Mary Kathleen had almost the exact same stats at her two year check-up. She was 34.5 inches and 25.4 lbs. Of course, she's a girl, but still. Now she's in the 75th percentile for height and weight!

Dr. Davis said that since he isn't putting two words together yet (like saying "dog bark") that we might want to consider increasing his speech therapy. He is happy to see that his receptive language is on target though. He passed all the little screenings for autism and lead poisoning. He had his lead levels checked several weeks ago when his dig levels were checked for Dr. Bromberg so we already knew that wasn't a concern.

I asked Dr. Davis about his opinion on Connie getting an April dose of Synagis, the vaccine for RSV that preemies and heart kids get from Nov-March for the first two years of life. He said that since Connie will be starting "preschool" next week that it would be a good idea to get one more dose in since the RSV season is running late this year. That means that most of the cases they've seen have been recently and the season isn't "over" yet. We put a call in to Dr. Bromberg and his nurse, Kelly, agreed that with being around other kids it would be a good idea. So now they will try to coordinate benefits with insurance and insurance will probably deny and then we'll probably have to fight and write letters! Nothing is easy. It is all about money and the insurance company doesn't want to spend another $3300 for another month's injection.

Stay tuned next week for an update after Connie's first day of preschool. He'll be going to Ft. Zumwalt North's Child Care Lab three mornings a week for 2.5 hours per morning. Monday is an Open House where Daddy will stay with him the whole time and he'll get comfortable with his classroom and the new people. Then Tues, Weds and Thurs he'll go to "school". This program lasts until the middle of May. It should be a good experience for him to be around other kids his age. I'm hoping his speech development will really take off, but I'm crossing my fingers that all the winter germs are gone by then!

Our little Irishman

Just in time for St. Patrick's Day. . .

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Connie has become quite the little adventurer when left to his own devices. Greg went out to get the mail the other day and when he tried to come back in the house, Connie had locked all the doors! He also has learned how to feed Belle and feeds her no less than 5 times a day. That's okay, though, because he only gives her a morsel or two each time.

In other news, Grandpa is recovering well other than the delusional state that the pain meds put him in. His incision goes from his shoulderblades to his tailbone! All the therapists say he's advanced! Hopefully he'll be coming home by early next week.

Connie and Grandpa Update

Grandpa is in quite a bit of pain but they are keeping him pretty heavily dosed with pain meds. He is still in ICU and expected to be until tomorrow. Crazy that he's in the same unit as the shooter from the Illinois church!

Connie woke up as soon as I finished posting last night's post. Murphy's law, I guess. I gave up and had Greg take over at midnight. Greg said he woke up about 2 times overnight but went back to sleep quickly. Today he took a three hour nap! and is almost himself. He still sounds sick but we're crossing our fingers that he sleeps better tonight.

Grandpa is Out of Surgery and Connie just fell asleep

My dad's surgeon came out after 12 actual hours of operating and said that he was pleased with the outcome. Dad will be completely out of it tonight and since there are no ICU beds and that's where he would go after such a procedure, he's staying in recovery all night long and he's the only patient and has four nurses! How's that for patient:staff ratio? He said he stayed stable the entire length of the operation and could not be doing better. Praise God. Please continue to pray that as he awakens that his pain is able to be controlled and his recovery is smooth.

As for Conway, he did pretty fine this afternoon but this evening just couldn't settle. His breathing was more labored. Not sure if he couldn't sleep because of the steroid treatments or what, but he just didn't want to be in bed and we can't exactly let him cry and get worked up b/c he is unable to breathe when he gets like that. He finally fell asleep about 5 minutes ago (10:07pm) which is quite late for him. We're crossing our fingers that he sleeps peacefully all night and we don't end up having to take him in.

Croup

Connie woke up at 4:15 am today struggling to breathe. He had a horrible, barky cough so I quickly gave him an abuterol treatment. It seemed to make no difference whatsoever. He did calm down a bit to drink some milk and then about two hours later went back to sleep. When he woke up at 8:30 he got another treatment and sounded just as bad so I called the doctor and they said to bring him in since he was pulling a little around the ribs and laboring. I have never heard him sound so rough.

I took him in and Dr. Davis thinks it is croup and a sinusitus. He gave him an oral steroid, dexamethasone, in the office and wrote a script for Azythromycin for the sinus drainage. He said that if the treatments don't work within 20 minutes of giving it, to take him to the ER.

My dad is having a 10 hour back surgery today at SLU hospital so we'd appreciate all the prayers you could send on his behalf.

Happy Birthday to Conway!

Conway will turn two years old at 2pm today! Last night we had a simple celebration with cupcakes, cake and ice cream. He got a few balloons and some great new toys. He loved his "Melmo" (Elmo) card.

There was a time when we didn't think we'd see this day and now here it is and we are in the midst of a pretty "normal" existence (if there is such a thing). We couldn't be more thrilled.

Thanks for following him for so long. We appreciate your continued prayers!

Greg and Erin

Follow-Up

Took Mary Kathleen to her follow-up with Dr. Kane (plastic surgeon) today. He said her incision looks great and just to keep it moist with neosporin or vaseline. She was very social and told him all about the bracelets she was wearing and her Max and Ruby shoes and he invited her to his house to see all the bunnies out in the yard. She told him how Belle likes to eat bunnies too:( He said she couldn't be any cuter.

As for her hives, she's been taking Claritin since last week and hasn't had a single rash or bump or lump of any sort. She has complained about pain in her feet but nothing visible is wrong with them. Interesting note: ever since we started her on the Claritin, she has had a very noticeable tic where she twitches her eye(s). It is virtually constant. Back in the fall she started with a throat clearing tic of sorts that the doctor told us to ignore completely. That one has stopped and now it has manifested into this eye blinking, twitching thing. Doctor Davis said that if the hives were from a virus, it should be out of her system by now so we are stopping the claritin and will watch to see if they come back. We are also hoping that as the claritin leaves her system, so will the blinking. Dr. Davis' nurse, Chris, said it best when I was on the phone with her Friday, "She continues to be a mystery."

My mom got results of the MRI on her back and the spot they thought might be bone cancer is not! Praise God! It is just arthritis that has dissolved that portion of her spine. For now she is holding off on any surgical procedures while they schedule multiple back surgeries for my dad this spring. Remind me not to get older.

Thanks for keeping us in your thoughts and prayers. This journey called life would be a heck of a lot harder without all of you in our lives.

p.s. Yesterday I took the kids to the Valentine Party for the heart families at Children's Hospital. I couldn't take pics there b/c I was too busy with two kids trying to do crafts and snacks and everything else, but I did get a couple of pics of the two of them in the car on the way home. I think the pics speak for themselves! Well, the pics will have to wait because I can't seem to locate the camera at the moment and I need to go to bed. Now you have something to look forward to for the next post!

It's always something

Connie's back to eating like a little piggy. On Sunday he had three breakfasts! He's acting like a normal boy and even learning some new words. He's been requesting Melmo (Elmo) and nog nog (chocolate milk). He used to call egg nog "nog nog" but since it is no longer the holidays and isn't as readily available, he's now convinced that mixing chocolate Carnation instant breakfast in milk makes "nog nog". To each his own.

For the not-so-fun update: Mary Kathleen has been having these hive-like outbreaks for weeks. Assuming it was a virus or allergies, we treated with Benadryl on the pediaticians recommendation. It's been going on a bit too long for my taste and last Friday, she had some major nodule lumps break out on her feet and hands. We took a video of the feet and had the doctor watch it. He ordered bloodwork looking for allergic reactions and it came back normal. That was discouraging because we were sure it was an allergy. Benadryl was working, but just completely wipes her out so it's not a long term solution or anything. After getting the results of the bloodwork, he referred us to a RHEUMATOLOGIST! Can you believe it?! He said he wants to rule out any sort of Juvenile Rheumatoid Arthritis. Hearing that definitely scared me and then angered me when I discovered that we can't see the rheumatologist until APRIL 6. We have since switched her to one daily claritin, which doesn't make her drowsy and so far (knock on wood) has prevented any outbreaks. That has kept me hopeful that it is just an allergy after all. If you could say a prayer that this stops or that we can get to the bottom of it and that it is not something that is degenerative or long-term.

Anointing of the Sick

Today at Mass they had a special time after the homily where the priests asked if there were any in need of healing and called those forward to be anointed. I took Connie up and Fr. Jim anointed him. Of course I had so many memories and feelings come rushing over me at that moment. From thinking I'd never hold him alive again to how I felt last Easter when that stranger lay hands on him and his true recovery began. I had tears of joy just at the fact that I could kiss his forehead and that he's with us and doing so well today. Cute story from today: Connie had been rather fussy/whiny/clingy all day today. He was following me around and saying "uh, uh" (up, up) when I was trying to put on make-up, trying to iron, trying to make dinner, etc. Finally, one time when I picked him up I looked at him and asked, "What is going on with you, Mister? Are you sick?" He immediately put his hand on his forehead and then touched each of his palms. I think he was associating me saying the word "sick" with getting anointed and he was mimicking the actions of the priest touching his forehead and palms. Isn't he smart? Maybe he was just practicing. I, for one, think he's going to be a priest. I sure hope so. As soon as we found out we were having a boy, I was already hoping he'd either grow up to be a priest or in the military, as I think those are about the two most honorable things a man can do. Turns out the military won't take him with a bum heart so I guess it's off to the seminary!

Mary Kathleen continues to do well after her surgery. She hasn't had anything at all for pain since one dose of ibuprofen on Saturday morning. She has been careful not to bump her head since she doesn't want it to split open. She was a little bummed out on Saturday with the nice weather that she couldn't ride her bike but I didn't think it was a good idea for her helmet to be rubbing on that incision and I wasn't going to let her ride without a helmet. She settled for a ride in the wagon and playing at the park. She loves digging and her fingernails prove it! Who knew she liked getting messy? This is a kid who never wanted to play with play doh. They are getting excited to go visit Grandma Marybelle in Florida during spring break. Especially now that they have learned that they can dig in the sand!

Finally (I know this has been a long one, Michael!), I wanted to make remind everyone that this week is Congenital Heart Defect Awareness Week. Did you know that CHD's affect more kids than autism? Bet you didn't because you don't really hear celebs speaking out about it. It hasn't become anyone's "cause" really and those that are doing something aren't getting a lot of press. Fox News' Bret Baier has a 19 month old son with a complex heart. He was interviewed about it on ET and last year he gave $1 million to CHD research.

We are going to walk again this year in the St. Louis HeartWalk. Instead of walking in St. Charles, we are going to walk at Forest Park because several other heart families we know will be walking there and Children's Hospital sets up a tent with lunch and lots of the staff that work with these kids come out for fun and fellowship. We'd love it if you could walk with us. If you can't make it on May 2nd, please consider making a small donation to the American Heart Association. You can get more information here.

Here are some CHD facts for you to consider. It is our hope that you would just tell one other person you know one thing from this list to help increase awareness.
(heart friends, bear with me as I'm sure you've read this list several times this week already:)

© CHD is the most frequently occurring birth defect, and is the leading cause of birth-defect related deaths.

© In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined; yet funding for pediatric cancer research is five times higher than funding for CHDs.

© 1 in every 85 babies is born with a CHD . (Updated statistic as of January 2007 by American Heart Association – shows a 22% increase from 1985 to 2000.)

© Sometimes during early pregnancy, a baby's heart fails to form properly, resulting in structural abnormalities known as Congenital Heart Defects. Although some defects are genetic, in many cases the cause is unknown.

© This year, almost 40,000 babies will be born with a congenital heart defect. 4,000 of them will not live to see their first birthday.

© 91,000 lives are lost each year in this country due to congenital heart defects.

© Approximately 1 million American children and adults with Congenital Heart Defects and Childhood Onset Heart Disease are alive today.

© There are 35 different types of congenital heart defects. Little is known about the cause of them. There is not yet a cure for any of them.

© Congenital heart defects occur frequently and are often life-threatening, yet research is grossly under funded. Only one penny of every dollar donated to the American Heart Association goes toward congenital heart defect research.

© In the last decade, death rates for congenital heart defects have declined by almost 30% due to advances made through research.

© Although some babies will be diagnosed at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHDs are not detected until adolescence or adulthood.

© Some CHDs may not require treatment other than periodic visits to a Pediatric Cardiologist. Others can be treated with medications or repaired with surgery and/or procedures. Complex defects may require several surgeries and are never really "cured" (like Connie's).

© More than 50% of all children born with a congenital heart defect will require at least one surgery in their lifetime. For more complex defects, some children will have to undergo at least three open heart surgeries.

© Many cases of sudden cardiac death in young athletes are caused by undiagnosed CHDs and Childhood Onset Heart Disease.

© During the year 1998 in the United States , 55,000 hospital admissions for treatment of CHD were recorded, a statistic which includes an estimated 20,000 operations performed for repair or palliation per year.

© The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.

Information provided by The Children’s Heart Foundation (www.childrensheartfoundation.org), Saving Little Hearts (www.savinglittlehearts.com), American Heart Association: Statistical Update 2001, American College of Cardiology , 32nd Bethesda Conference: Care of the Adult With Congenital Heart Disease

No Pain

Mookie was noticeably more calm today and tried not to move her head too much. She didn't need any of the tylenol with codeine. We just alternated the ibuprofen and regular tylenol every three hours or so. She got a bath tonight and I was even able to wash her hair. I didn't scrub over the incision, but at least she smells good! I scheduled her post-op follow-up visit for Monday, 2/23.

Connie has not thrown up since the middle of the night on Wednesday, but he's not eating much either. At both lunch and dinner today he chewed and vigorously went after his food only to spit out every single bite. I haven't figured out what the deal with that is yet. Even his favorite food, scrambled eggs!

Thanks for checking in and thanks for the continued prayers. It is still amazing to me that so many people care about and love our little family after all this time.

Erin

All Tucked In

Mary Kathleen and Conway are both sleeping peacefully. She was complaining about her head hurting a lot before bed so we are going ahead and picking up the prescription. Connie has not thrown up anymore. He ate a decent breakfast but wasn't too hungry at lunch or dinner. I didn't give him any milk today so we'll see tomorrow when we go back to milk if the vomiting comes back.

Here's what the incision looks like. It's hard to see with the flash, but click on the picture and it is the entire distance between my fingers. No wonder it's sore :(

All Done

Dr. Kane just came back and said she did great. He said it was quite large once he got in there. 2cm by 3cm. He said that the skin seemed to close rather easily, not too tight or much pulling so that is a good sign as far as the widening scar goes, but he said all bets are off and it could still pull. He used several layers of dissolving stitches and said to watch her activity level. No roughhousing since a bump to the head could split that open. Watch for bleeding and infection, both rare. He said we'd be able to go back in about 20 minutes to see her. We'll go back to see him in 2 weeks for post-op follow up and he'll show us pictures of it at that time and share biopsy results. He said if we really are dying to hear, we can call his office in about a week and they can look up the results, but not to lose any sleep over it. He said to give her ibuprofen and tylenol and they'll give us a script for some tylenol with codeine, but if she were his daughter, he wouldn't even fill it.

Thanks again for the prayers!

Updates

First, I will update you on Connie and then tell you where we are pertaining to Mook. Connie went to sleep easily once he got his Monkers and got cleaned up from his bath. We didn't hear a peep from him all night. I was crossing my fingers but this morning when he woke up, it was apparent that he had thrown up in the night as his bed and head and neck and pajamas were full of dried vomit. Poor kid either was too tired to realize what happened or something, because he didn't even cry for us. He got another bath this morning and we had to wash Monkers and sheets, etc. Grandma and Grandpa came over to take care of him so Greg and I could get out the door with Mook. He had some grape gatorade. Last I heard, around 9:40, he had kept down some grape gatorade, toast and applesauce. Grandma and Grandpa were going to wait until that stayed down at least 40 minutes before trying his morning meds. I haven't talked to them again since, so hopefully things are still fine. He was getting speech therapy when I called.

Now for Miss MookieRoo. We woke her up at 6:30 so she could have some gatorade and apple juice before 7am (no food after midnight and no clear liquids after 7am). She enjoyed drinking her gatorade out of her bunny cup. Then we got out the door and got here about 20 minutes early. This hospital sure does it right, you know that? They are super organized and very friendly. We got right up to same day surgery on the sixth floor and Dr. Kane was waiting for us. He cut her long black streak of hair and gave us a baggie to save it. He went over the procedure again and really, the only fear and biggest risk is that the incision site will pull apart and widen and she'll have a scar where no hair will grow. The worst thing would be if she wanted a short haircut later in life. They will send the tissue for biopsy and he said it would be highly unlikely that it would be of any concern. She has been so good. They listened to her and again we told them about her sniffles and symptoms and they said if they rescheduled every kid with sniffles they'd never do a surgery! They checked her thoroughly and listened close to her breathing and cleared her for surgery. They were running ahead of schedule so they took her about 15 minutes or so early. They usually give a little Versed or something to take the edge off but they said she was acting so calm they would skip it with her. She let them write "yes" on the back of her head with a sharpie marker. They told us her face might be a little puffy because she'll have to be on her belly for the surgery. We played Concentration and put a Max and Ruby movie on the laptop but she wasn't too interested in watching. Pink Santa Bunny got his own ID bracelet and went with her into surgery. She looked so cute in her hospital gown and pants. The anesthesiologist let her pick out a mask for her giggle gas and they put a flavored spray on it. She chose cherry flavor for her mask. Dr. Kane expects the actual procedure to take 30 minutes or less but they have prep and recovery and such so they said they'd be finishing up around 11:00-11:15. I'll keep you posted when we hear something more. Thank you for the emails and prayers. They mean so much. Compared to what Connie's had done, this is a piece of cake, but I was worried about her and being afraid since she's older. That hasn't been the case at all and I know it is because of all the prayers.

Yuck again!

You guessed right. Connie is vomiting again. Tonight at dinner he turned his head when I offered him a bite. He drank 1/2 a cup of soda (not an everyday occurrence but Grandpa said he barely had any wet diaper today and I didn't want him to get dehydrated. I knew he'd drink soda at least so I gave him some in his cup). He commenced to throw up at the dinner table. He played and acted fine. He ate a nutri-grain bar and drank milk and kept it down for over three hours and then all of a sudden, a little cough and some crying and up it all came. He's been getting his antacid so I'm not sure what's going on. Speaking of antacid, I got a letter from Cigna (the world's tightest insurance company) today saying that they will not approve a refill on the prevacid the way it is written. Someone who works there apparently knows how to treat Connie better than his own pediatrician so they've decided he should be taking twice as big of a dose once per day rather than 1/2 the dose 2X per day because it is cheaper that way. Ugh. Not looking forward to dealing with that issue. Please pray that he stops vomiting.

While we're asking for prayer requests, please keep Mary Kathleen in your prayers on Thursday, tomorrow, for her surgery to remove her congenital nevus birthmark from the back of her head. We head down to Children's around 7:45. She's scheduled to be taken in sometime around 10:00-10:30. That's if they proceed. Generally they don't like to put kids under who have any symptoms of a cold/cough. She has been coughing some and has a runny nose on and off. We're not sure if she's actually sick or if it is allergies, especially with the hives she had all last week. They said they will make the call tomorrow and listen to her lungs and check her out thoroughly before proceeding with the surgery. I don't want it postponed after taking the day off and arranging a sub, but I don't want her risks of complications increasing due to an illness when the procedure could be rescheduled. We'll update when possible.

Conway's 1st Time Playing in the Snow

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After lunch we braved the cold and went out for a little bit so that Connie could actually "play" in the snow. He's seen snow but never actually experienced it. We bundled and bundled until he could barely move. His favorite thing to do was to pat it the same way he splashes water in the tub.

Roseola?

There are differences than when we had this awhile back, but tonight Connie presented with a splotchy red rash all over his trunk and tops of his legs. I may be mistaken, but it seems strikingly similar to a viral illness that either he or Mary Kathleen had some time back. I remember days of illness, then better, then mysterious rash all over. Doctor diagnosed that one as Roseola or some other enteral virus. The difference this time is no unexplained fevers for the days preceding the rash. Who knows. He sure keeps us on our toes! I am happy to report that his appetite is mostly back to normal now and he seems to be nearly 100%.

We can't let this update go by without mentioning big sister, Mary Kathleen. Not only does she have a rash of her own (not the same one as his--nurses from Children's are calling hers hives for now) but she turned four years old today! We celebrated with family today and the birthday girl enjoyed her bunny themed day. She was elated to wake up to snow this morning. She's been talking about it all winter. Last year she didn't even want to touch or step foot in snow and this year she's desperate to play in it for hours! The other exciting event of the weekend was the addition of bunk beds to our home! Greg worked super hard on Friday and Saturday and the girls' new room has really come together. Here are some pics so you can see for yourself.

Another update

Conway has not thrown up anymore. Yay! His diaper this morning was pretty wet. Yay! It also had a very loose stool. Yay again! I don't know many moms who are excited about diarrhea, but to me, it sounds more like a virus or bug if diarrhea is involved. As much as we don't like bugs, they are better than heart problems!

Dr. Bromberg had Colleen call back yesterday and say that if he continued to vomit he would want to recheck his pacemaker. We just did a check in early January and it looked okay. Hopefully this positive trend of no vomiting continues. Thanks for your prayers.

Called the Cardio

and talked to Colleen, one of our favorite nurses. She listened to the whole story and she feels like it is not heart related but will definitely relay it to the docs to see if they agree! Whew! What a relief! She said if it were the heart, she thinks he would be throwing up with each meal and not just once a day. She got the lab work and will also forward that on. She was concerned about his dehydration too, but understands now that he had been vomiting so that was likely the cause. She said to keep an eye on the wobbly walking and if it seems like his activity level tapers off to definitely call back.

Thank you for praying. Greg said today he has been okay, just looking a little peeked.

Update from Blood Work

The nurse called me with the results of Connie's labs today. His white count is not elevated so that translates to the fact that a bacterial infection can pretty much be ruled out. That would lead one to think virus, but Dr. Davis already said he wasn't leaning that way since there are no other symptoms, no one else in the house is affected and since the incidents are so spread out. The tests did reveal that he is slightly dehydrated (surprise! Wasn't the puking the whole reason we called the doctor today?). We are trying to get more in him. Even if that means letting him drink soda (with some clear pedialyte snuck in). We got him some cherry gatorade and he loved that. His digoxin levels were within normal range but they were going to fax them over to Dr. Bromberg and if something was fishy there, they'd call us. I'm going to go ahead and call him myself in the morning, just because it will make me feel better. Tonight, please pray that Connie can sleep soundly and keep today's nourishment in him! I'm almost out of fabric softener anyway and would rather not have three loads of laundry to do at 3:00 am!

Something's Up. . .

. . .but we don't know what exactly. Connie threw up several times Sunday night and was fine yesterday. Then early this morning (3:30 am to be exact) he woke up crying and vomited several more times. This morning he was fine again and kept down what he had for breakfast. We called the pediatrician because it just doesn't seem like some sort of stomach flu bug if he's fine all day and keeping down his food and then at night throws up everything he's had all day. Something is keeping him from digesting his food and we're afraid it's that his leaky aorta has gotten worse and isn't getting enough blood to the digestive tract so that it can move the food through like it's supposed to. Dr. Davis checked him out and he has no fever, no diarrhea and no other symptoms. he doesn't feel it is a stomach bug. He thinks it might be some acid reflux and has prescribed our friend, Prevacid, for the next month to see if he improves. He also ordered some bloodwork so we headed off to Quest Lab for that. After waiting over an hour, we finally got out of there! Poor Connie did not like it one bit, but at least they got the vein on the first poke this time. They had to take three vials! Dr. Davis is checking his Digoxin levels in addition to the normal CBC stuff. We should find out later today if something is off with that. He said sometimes the heart meds can cause stuff like this. Maybe if he needs a different dose or a different med or something. I'm going to research it a bit while I wait to hear. I asked him what happens if he takes the Prevacid, bloodwork is normal and he is still throwing up at night. His answer was, "Then I call Dr. Bromberg." In other words, he would feel it was a heart issue and would be getting the cardiologist involved at that point.

I've been having bad feelings lately about him but I keep shaking them off thinking to myself that it's just been because I've been reading about a lot of other heart kids locally that we keep up with have been struggling lately and having to have interventions, etc. Whatever it is, it is in God's hands and He has the answers. We will continue to put our faith in him. Thank you all for praying.

Cute Note about Connie's Communication Skills

Today Connie was in the middle of his weekly speech therapy session with Ms. Chris when Nurse Jen arrived to administer the monthly dose of Synagis to vaccinate him against RSV. When Connie looked up and saw Jen, he immediately started shaking his head, "No" and then folded his hands in prayer. It was like he was asking God to deliver him from having to get two shots! Greg, Chris and Jen all died laughing. Connie apparently didn't think it was a funny situation. He definitely remembers Jen and what her job is, even though he's only seen her a few minutes in November and December. That boy is unbelievable. Grandma even said last night at dinner that it's like he might forget that we all think he doesn't/can't say much. Out of the blue he said, "I want more milk." Now, it wasn't quite that clear, but I wasn't the only one who could understand him. Where did a complete sentence come from? The most we've heard is two words or two syllables strung together! I need to take a video of him answering questions because it is so cute the way he says, "uh huh" (his version of yes). His whole body moves in agreement and his voice gets really high pitched on the first syllable. It's a sight!

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