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

Make video montages at www.OneTrueMedia.com

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

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.