Ali had her screening done today and it was all clear, so for the rest of the day, we can take comfort in knowing that there are no tumors. Then tomorrow the worry starts all over again.
Not much else to report, Ali is booked for the second surgery of her G-tube insertion on October 25th. It’s just a quick little procedure but it’s still done under anesthetic. She is having a MicKey inserted and then the G-tube will be complete!
Since I last updated we’ve been enjoying our summer with our two little girls. We’ve been camping three times and are planning another trip later this week. Just for the record we don’t camp in a tent (we’re not crazy!!!), we camp in our fifth wheel with most of the comforts of home which is perfect for all four of us. Ali loves camping. She loves to lay in the trailer on the bed in the master bedroom and stare at her feet or lick her toes and hands. I think her favourite part of camping is laying in a camping chair on a nice soft blanket under the awning to have a nap in the breeze. We recently went camping in Jasper with my parents and my sister and Brother in Law. A great time was had by all. Madi went swimming with Daddy and Grandpa and I tried to get Ali into the pool but she didn’t think that was such a great idea so she settled for a bath instead! Ali was a good girl and managed not to get too upset in the noisy restaurants which is a major improvement for her, noise used to always lead to a very sad baby. Sunlight is still a big issue for Ali but she is becoming a little less sensitive to the light and we have high hopes for her next summer!
Ali is working really hard to build up her muscle strength. She is doing really well with her “exercises” and we have seen lots of improvement in her tummy time and her head control. We are working towards a goal of sitting on her own by her first birthday. It’s a lofty goal but we like a challenge!!!!
Ali loves to lay in her crib and listen to “her music” (fisher price magic aquarium). She actually seems to sing along and move to the music and god help us if it turns off before she’s ready, we better be in there quick to turn it back on! Ali has also recently learned the value of a good book. She loves to look at picture books and frequently reaches up to graband touch the book and pictures.
Feeding is still a huge issue for her. She is still not gaining any weight despite a calorie increase and the addition of a supplement to her diet so we are going to have to try something else I guess.
So all in all, Ali is doing really well aside from the feeding issues!!!! She’s an amazing little girl and we adore her. She is so social, I think she’s going to be just like Madi. We might be in trouble!!!!
We started off with the standard chat about what to do if she goes into heart failure. Is that the topic that all pediatricians open with at an appointment or are we just lucky?
Then we talked about her tumor risk. This is the part of her syndrome that keeps me up at night. We screen for tumors in her abdomen but if they were to occur any where else then lets face it, we’d be screwed. But after my conversation with the pediatrician today I am satisfied that we simply can’t do anything to screen for tumors in other at risk sites. We’re doing all we can and I guess I have to be satisfied with that. As my mom said to me today, “God already gave us Costello Syndrome, he won’t give us tumors too!”.
Developmentally, our pediatrician was really happy with what he was seeing from Ali. He called her FABULOUS! She is still doing things that he wouldn’t have expected like reaching for toys and developmentally he feels like she is “only slightly lacking”. That sounds just fine to me! He commented on how good natured she is (not expected at all) and on how much she moves around and grasps with her hands despite her lack of muscle tone. I think he was impressed!
Ali is pretty little. When you compare weight for height then she looks pretty good, but she is fairly skinny. She is smaller then the average baby for sure and although she’s fine now, if the trend continues then we’ll have a problem in the near future. With that in mind we’re going to put Ali on a more concentrated formula to try to get her more calories. She hasn’t gained any weight in the last 4 weeks but she did grow in length by 1.5cm. She used to be short and fat and now she’s long and skinny!
He also thought that her eyesight was much improved!
It was a good day!