"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

Saturday, April 26, 2008

Stationary No More!

Connie is officially on the move. Last night he made his way from in front of the coffee table to in front of the love seat (about five feet away) and pulled himself up on my leg. He did it before I even realized what he was doing. Greg and I were talking and I looked down and he was standing up and holding on to my leg. He has fallen off of our bed (it didn't phase him) and seems afraid of nothing. Deb, the PT, said that is one thing that impresses her about him, that he's not afraid and that he's willing to try any new skill. We figured out how to adjust the wheels on his walk-behind toy so that doesn't roll quite so easily and he now can stand at it and take a couple of steps without us holding on to the toy! Today was our first day trying the 50/50 blend of formula and breastmilk and he threw up the first two attempts. I started to get bummed, thinking we were going to have to go back, but the next two he did fine and didn't even flinch. I think that the problem is we went from 220ml's two weeks ago to 205 mls last week (we could go down on volume and get the same total calories/feed since we were introducing a more caloric fluid)and then up to 230 mls this week. We want him to be at 250 mls by the time he gets to 100% new formula so that would be 230 this week, 240 next week and then 250! So, it's hard to tell if he was struggling with the increased volume, the concentration, or neither. Since he kept the last two feeds down we'll continue with this plan tomorrow and see how he does. Hopefully he does as well as he has with the past adjustments.

Connie's cousin, Liam, came over today. After their afternoon naps they played outside together until it got cool. Inside, Connie was very good about sharing and showing his younger cousin how to shoot hoops and bang toys together. He needs a little practice being gentle. He gave Liam "love pats" with about the same level of force that he does the dog (i.e, too hard!). Here are a couple pics of the boys hanging out under the swingset and Connie with his walking toy and Grandma Marybelle. Enjoy!

We are so thankful and pleased with the progress Connie is making. It is so hard to believe that 8 months ago exactly I was packing for our trip to Michigan and the start of this whole ordeal. What an amazing journey it has been! I've learned so much about myself, God and even medical terms I wish I didn't know. God has also shown Himself to me through so many of you and many others out there who don't even realize how they've touched us. We are so blessed. I want to remember this feeling for a long time. Hopefully I'll remember it the next time a challenging situation presents itself :)

Wednesday, April 23, 2008

More Progress

Today was a busy day, Connie-wise. First, we started the morning with a visit from our parents as teachers parent educator, Jennifer. She spent the hour watching Connie play. She brought things for typical 13-14 month olds and he did great! She even brought some activities that she normally reserves for 15-16 month olds and he was able to do those as well! Hooray! Then we made our way back down to Children's for his 6 month follow-up with the neurologist. Can you believe it's been six months? The doctor was very pleased with his progress and also very happy to hear he's had no more seizures or other major health events since he saw us last. He did say that Connie's lack of eating and talking is a concern, and that if, by our next checkup, they do not see marked improvement in these areas, they will recommend stepping up the therapy visits for sure. We are so thankful that he's just a normal little boy in almost every way. We know that God heard everyone's prayers and is answering in His time.

The big news is Connie can crawl! Last night he woke up at 10pm and just had to show off. We ended up playing with him until quarter to twelve because he was just so full of energy and enthusiasm over his new skill. Greg was laying on the floor eating a bowl of cereal and Connie wanted to see what that was all about so he went from sitting to all fours and took four to five "crawls" forward. He does seem to have some confusion about moving that second leg to catch up with the first, but I'm sure with more practice he'll nail it. One other time today he made the attempt to get somewhere, but for the most part, he's getting to all fours and lunging forward and "talking" excitedly and then goes back to sitting. Silly boy. He can also pull himself to standing if you hold his elbows. He's now mastering the art of wrestling on the floor. I get down and play airplane with the kids and when it's Mookie's turn I sit him next to me on the floor and while I've go her in midair, he pounces! He doesn't fight fair, either. He goes right for the face and you can't get away because he's got a fistful of hair!

Thank goodness the dietician is coming on Friday because today at the doctor his weight was 24 lbs 6.5 oz! That is an ounce and a half shy of a one pound gain since last week! We've been adjusting his feeds, but keeping the same caloric intake so I'm not sure what's going on. All I know is he's starting to pork out a bit!

Monday, April 21, 2008


I guess I've been hanging out with Connie too much as the doctor has put ME on heart medicine! My heart is fine, but he feels like my 'sinus' problems are really migraines so I'm restarting meds for high blood pressure as a preventative. The beta blocker, Atenolol, should help. We'll see. I say restarting because I was put on Inderal, a similar drug, back in 2000 to control/prevent migraines. I stopped taking it sometime in late 2003 as my headaches were virtually non-existent at that time. I have a crazy bad cold or sinus infection or something along those lines and thought I should probably see the doc since it's been off and on for at least a month. I thought he'd give me an antibiotic and send me on my way. Boy, was I surprised?! After talking more he came up with this theory. I'd think he was off his rocker except for the fact that my beloved sudafed and tylenol have not been touching the 'sinus' headaches I've been having lately.

Connie's doing well and doesn't seem the least bit phased by the procedure he had last week. I'll just be glad when he can finally have a real bath again! He HATES sponge baths. . .and he's terrified of having his hair washed in the sink. The last one he got he literally got so mad and worked up that he threw up. It made me think, "Was it worth it?" I mean, we bathe him so he doesn't smell like puke and he pukes shortly after the bathing so maybe it's not worth putting him through the torture of it all :)

He has been really snotty lately (clear, like always). With this, we typically see a reduction in his oral intake (like from barely nothing to nothing!) and an increase in his vomiting. This time is no different. But today I saw two new teeth, incisors, I think, popping through. Hopefully once they are in a bit more this congestion and drainage problem will go away. Teething seems to be the only explanation we ever can come up with for these symptoms. We are in the process of weaning him off of breastmilk completely and working toward the goal of getting him off of the overnight feed. He now gets his new formula, Peptamin Jr., at 100% strength for the overnight feed. His daytime feeds are at 25% Peptamin Jr. and 75% breastmilk. We'll do this until Friday or so and then try him at 50/50 for a week and then 75/25 and then hopefully by the end of May he's at 100% Peptamin Jr. 4X/day and nothing overnight. The Peptamin his a lot higher calories per ounce than breastmilk so he won't need quite the volume. We're also hoping that he'll wake up hungry in the morning once he's not getting fed throughout the night so he might be more motivated to try to eat orally. This is a long process and quite trying on the patience. I've been weaning down on pumping and digging into my freezer stash of breastmilk. I'm now only pumping once a day and hope to be done soon. Since I'm on that new medication, I have to dump all the milk I pump :( I told you all we'd need that stuff in the freezer! We were told at his last OT session not to be surprised if he still has this tube a year from now. Many people have been asking lately, and I have been growing impatient with his progress, so I just thought I'd tell you where he's at with that and what we have been told to expect. I'm just thrilled that he's doing so well cardiac-wise because the longer we can put off surgery, I think the better chance he has of coming around on eating. If he's got unpleasant stuff going on and people are putting things in and on him that don't feel good, it's that much longer before he trusts us that it's okay to eat. So, it's a good thing that it looks like we're in the clear for several years that way. Thanks for looking in!