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!

Ali and I have been participating in a program at the health unit for moms and babies. It’s being run by our regular OT and she asked us to participate because she thought it would be good for Ali. So twice a week I go and sit in a room full of “typical” babies and I watch them and I watch what they do and I have no choice but to realize how different Ali really is. I sit there and wonder if the people around me can see how hard this is for me, I wonder if they can see how hard I struggle to be there and if they can see how scared I am that my baby will never reach the milestones that theirs have already reached at the age of 10 or 12 weeks. I look at the older babies who can sit and who are learning to crawl and I know that at this time next year they’ll be running around and Ali will probably still be learning to sit. Then when it’s over I get into my car and I cry all the way home.

Once we get home and it’s just Ali and Madi and I then I can convince myself that everything’s okay. I can go back to appreciating the amazing progress that Ali has made and I can concentrate on the fact that she has done so well with what she’s been given. You see I celebrate every smile, every giggle, every coo, every time she puts a toy in her mouth because these are not things that she simply does. These are major accomplishments for her. I beam from ear to ear when she holds her legs up in the air or when she manages to hold her head up on her own because although most babies simply do this, mine doesn’t. These small milestones are the result of hours of work for her. On Tuesday she rolled from her back to her front while lying on the floor and although she may not do it again for weeks I feel a huge amount of relief that she did that for me. It’s like she gave me a gift. It’s not the first gift she’s given me though, the first smile, the first giggle, the first coo. All amazing gifts. I call them gifts because there’s no guarantees, she has a life threatening syndrome and we have to deal with the fact that someday she could be gone.

So as you have probably gathered from this post, I’m having a rough day. I’m tired of this and I’m angry and I’m worried about Ali’s future. I would do anything to change this or to have a crystal ball to tell me that I don’t have to worry and the she’ll be fine. I thought this would get easier with time but it doesn’t, it just kind of wears you down and some nights I wonder how I’m going to get myself out of bed in the morning. But I always manage because Madi and Ali need me and like I said before, there are no guarantees so I am going to celebrate Ali every single day. She’s a fighter and she’s determined and I know that she is going to be the best little person that she can be. That is why I’m going to take her back to that program next week and the week after and the week after.

I couldn’t love her more even if that nucleotide was right but life sure would be easier.

Since having her G-tube inserted Ali is way less mucousy (the mucous that kid had was ridiculous) and she gags a lot less. She still spits up a good mucous ball every now and then but it’s way less dramatic then before and she only turns red instead of purple! We’re really hopeful that as time goes on the mucous will become even less of an issue.

For us, the G-tube is intimidating. If the NG tube fell out we just had to stick it back in, if the G-tube comes we need to get Ali to the hospital for surgery! It is very big and so we have it taped down all over the place and pinned to her clothing in an effort to make sure it’s as secure as possible. Also if the cap opens then we end up with Ali’s tummy contents all over the floor. Note to self, keep cap closed!!! This is a temporary tube and the next step (in 3 months) is going to make our lives so much easier!  We just have to get by until then!

Thanks for reading!