Letter to Connie's OT

Tonight while in the bath, Connie played more than ever. Splashing and laughing and guess what else? He desperately grabbed at the cup we use to rinse his hair and drank out of it. That's right, he won't eat or drink anything nourishing, but he'll drink bathwater! I told Greg and he laughed and joked that he didn't care if he drank gasoline. It was still progress. I saw two really good swallows and that was after he accidentally got a mouthful and coughed a lot--he still wanted more. I got some of those wagon wheel finger foods and he's been playing with those and the puffs but his favorite is a strawberry nutrigrain bar that he gets all gooey and stuck to his fingers and then mouths all during mealtimes. Tonight he had some cheerios that stuck but I don't think he actually got those into his mouth. The motor control is difficult for him but I don't dare try to do it for him. He doesn't even want to take it out of my hand if he drops it (seems scared) and he wants to find it himself again. I'm tempted to get some milk the next time he takes a bath and see if he'll drink it out of the same cup. Can you believe he will drink the bathwater? He has been making hungry noises with his mouth more today. I'm sure it is because he has barely thrown up. He threw up a small amount after his 7am feeding, a medium amount after his 11am feeding and nothing since (it's now 9pm and two feedings later).


Anyway, I just wanted to pass on the good news and couldn't wait until next Tuesday! I was going to give you trouble and tell you that in the "race" between you and Deb, she was winning because he is making remarkable progress physically. Apparently, though, he likes you and wants to impress you and didn't want me to tell you that and hurt your feelings!


Erin Beckemeier

Update on Mary Kathleen

Dr. Sanchez says that it is possible that the hair follicles are just irritated. She did say that the bumps do resemble warts but since she has no other warts anywhere, that's not as likely. We are going to treat it for now with some medicated shampoo a couple of times per week and daily application of a topical ointment. If it goes away we can stop the treatment. If it is still there in two months they will do a biopsy :( If it changes more before then we will go back in. So, we are rejoicing for now that she doesn't think it is cancer or anything at this time!!

I hesitated to update on Connie yesterday because I was afraid I would jinx it. He went from Sunday afternoon until the early morning hours on Tuesday with NO THROWING UP! Of course he's thrown up four times today, but compared to last week today was even fabulous! I know it is because of everyone's prayers. Please keep them coming.

He got three shots today and had his checkup. Dr. Davis was pretty pleased. We like going there because everyone thinks he looks so big and so great. They aren't analyzing every ounce! He was 30 inches (90th percentile), 21 lbs. even (just over the 50th percentile) and 45.5 for head circumference (50th percentile). On his check out sheet he wrote for the diagnoses: Healthy, Heart Disease, GERD, Developmental Delay. It was hard to see the last diagnosis in writing. I know there is a reason for it and it won't be forever, but it was still kind of humbling.

Greg had a fabulous idea tonight. Lately Connie has been going to bed by seven at the latest but is waking up around 9 and wanting not going right back to sleep. To get him back to sleep on his own we've been putting the vibrator they gave us at the hospital in bed with him and it is enough to lull him to sleep. It goes through two batteries a night and sometimes doesn't even last the whole night. So, Greg got a chair massager that we had lying around the house and plugged it in and put it under the mattress. Now the whole bed vibrates and it's not eating batteries! Isn't he a genius?

Tomorrow he'll get weighed by the home health nurse so I'm anxious to see on the same scale we usually use how he compares.

Okay, Redirect for a minute

I know this website is titled, Care 4 Conway, but his sister, Mary Kathleen (aka Mookie), needs a couple of prayers said for her too. That pesky birthmark that they call a congenital nevus is changing. We had that scare this past summer about it when they held a dermatology conference to get all those second opinions on it. At that time it was decided that the risk to biopsy the mole at this time (and putting her under general anesthesia) would be greater than the risk of the mole being cancerous. We were told to watch it and come back in a year if nothing changed, to call before then if something did. Well, it's changing. It's not growing larger (I don't think anyway) but it is getting these raised bumps on it. One is larger and looks like a wart. The others are tiny little bumps under the skin to the left of the big bump. It was always smooth before and not raised. So, I called and we are going in tomorrow afternoon to the dermatologist. We are praying that some type of scan can be done before any invasive testing/biopsy/surgery is required. I'll update after we hear something. Thanks for the additional prayers. Geesh, I feel like a prayer hog.

This Week In Review-Looking Ahead

Well, for the past week or so, we've seen quite an increase in vomiting. For awhile he vomited the morning feeds but held down the afternoon/evening/overnight feeds. Then he started only holding down feeds while he was asleep and now he even wakes during a feed and throws up or throws up three hours later when the food ought to be digested. He has lost some more weight, down from 20 lbs. 15 oz to 20 lbs. 8 oz. He's not dehydrated so far, but the poor kid is hungry before his next feeding is due and I guess that's because he's thrown up everything in his tummy. Early in the week we talked to the doctor who said she'd try to move up the swallow study. Then we talked to the OT at Child Development and told her how we've gone backwards in his tolerance of oral stimulation. She said that we'd be lucky if he was even able to get the study done on the 13th at this rate.

He has thrown up his tube several times and we gave going tubeless a good, honest effort. We gave him time and lots of textures and modes of feeding and he was unwilling to attempt any of them. It was obvious to us that, as much as we'd like him to be, he's just not ready to "just take the tube away and when he gets hungry enough he'll eat."

We've not gotten much practice in with oral stim this week because he's been so miserable with all the vomiting. Each time it's a whole process to change him, wash him down and get him dressed again, only to have him puke all over the clean set up once we finish! He's basically been sitting in the high chair while we eat and playing with food. We put food, utensils and water or juice in a sippy or bottle on his tray and let him experiment but he doesn't usually do much. When he does we make a big deal out of it. His pincer grasp is coming along nicely though! This is progress.

When the PT came this Friday (her second visit so far) she remarked that he already is getting stronger. Noticeable improvement in only a week is fabulous! When he's sitting, he's pretty good about going to the sides and forward but he has a hard time coming back up once he starts falling backward. His abs are starting to strengthen enough to where he's beginning to self-correct when this happens. We are very proud. He loved bouncing on the therapy ball.

This upcoming week is another busy one for him. He goes to the pediatrician for a 9 month (yes, he's 9 mos. already!) well baby checkup and vaccinations on Tuesday. Then he has OT at 11:30 on Tues. and PT on Friday at 8am.

He is so happy other than when he is throwing up. Please continue to storm heaven with your prayers for God to heal him fully--both his heart and his tummy.