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.

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!