"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
--Jeremiah 29:11

Friday, October 10, 2008

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.

Tuesday, October 7, 2008

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. . .

Monday, October 6, 2008

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.

Sunday, October 5, 2008

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.