We started our day off bright and early meeting with Ali’s feeding team which consists of a nurse, a nutritionist and a feeding therapist (OT). Ali hasn’t gained any weight this week but she is still in the 50th percentile weight wise.  Although she did grow a bit lengthwise she has slipped below the 50th percentile for length but she is still above the 25th percentile. Generally babies with Costello Syndrome are around the 3rd percentile for height and length by Ali’s age so in terms of her syndrome she is absolutely huge!!! Imagine how big she’d be if we could get her to stop spitting up. As a group we decided that Ali is never going to bottle feed.  We were given permission to start giving Ali tastes of solid food. We are just putting little tastes onto her lips and she licks it off. So far she’s tried apple sauce and peach yogurt. We give her such small amounts that we don’t have to worry about the “rules” for starting solids and we’re just supposed to give her whatever we’re having. The tastes of solids didn’t make a huge impression. She gagged once but other then that she just licks her lips and looks totally neutral. I guess it’s better then screaming her head off.

We also had an appointment with cardiology on Thursday. Ali had an echocardiogram and an ECG. She was pretty squirmy for the echo so the pictures of her heart were suboptimal but the cardiologist was pretty sure that her heart defects were not getting any worse. She held totally still for her ECG so it was of great quality and it also showed no change from her previous ECGs. Children with Costello Syndrome often suffer from hypertrophic cardiomyopathy (can cause heart failure) so the fact that her defects seem to be stable is fabulous news!!!

We also had the opportunity to meet with the hospital administration in regards to Ali’s overdose and Jason and I were both very happy with the recommendations that the hospital made and has implemented because of what happened to Ali when she was in their care. They have done a lot of investigating and put a lot of work into their recommendations. I will elaborate when I get my written copy in the mail.

Anyways, thanks for reading.

It’s nice to have something to celebrate, it’s been a rough week since we learned that Ali has poor vision. Ali also has a really bad cold again so she’s spitting up a lot and she’s very gaggy and congested right now.

I’ve been up a lot at night with our little bobean and it’s given me lots of time to think about how our lives have changed. This is not what I planned when we decided to have another child. Nobody wants this for their child, nobody wants this for their family and honestly nobody wants this for themselves. Taking care of Ali can be really tough. It means lots of appointments, lots of work and lots of worries but being her mother is amazing. Ali gives more then she takes. She is my baby and I love her regardless of any syndrome or any challenges. She can light up my day (or night) just by smiling at me. I’m thankful that she’s here and I’m thankful that she’s mine but yes I’d fix this for her if I could, I just can’t. I don’t consider myself a strong person, I’m just a mother who loves her children and is prepared to do whatever it takes to help them be the best they can be no matter what they have to face. Maybe I shouldn’t say this but I’m not a mom who wouldn’t change anything because I’d change this in a flash if I could but I would never give up Ali. If changing things meant not having Ali then I’d leave everything exactly how it is. So whether it’s teaching Madi to ride a bike (that child has no idea where her feet are!!) or helping Ali learn to function with poor vision then we’re going to get there and get it done, that’s just all there is to it.

We went to a pediatric opthalmologist today and although he did admit that Ali’s problems are outside the scope of his practice, he did an examination and gave me his opinion. Ali did respond to some of the targets by either looking towards or away from the light and she obviously responds to light but she probably has horrible functional vision.

Ali’s optic nerves are both underdeveloped and her right optic nerve is also discoloured. The opthalmologist told me that when it comes to optic nerves, what you’re born with is what you keep so no chance of improvement over time.

Ali also has quite a substantial nystagmus. Nystagmus is related to the communication between the eyes and the brain and since it’s a neurological issue we need to see an opthalmologist that specializes in neurological opthalmology. The opthalmologist told me that sometimes it improves and sometimes it doesn’t but that to get a good understanding of any neurological issues that may exist we need to wait until we see the other opthalmologist. So more waiting I guess. She’ll probably be booked for an MRI as well to clarify any problems.

It’s really tough to get more bad news. I wonder what’s next?

So this information leaves me feeling really confused because I was so sure that Ali could see me. I’ve seen her smile at the dogs and at her home care aids so I thought she could see. I knew that her vision wasn’t great and that sound was helpful to her but I was really surprised to hear that it is as poor as it seems to be. I am even more in awe of her development then I was before today. She’s already proven that she’s a little fighter and that she’s a superstar and now we know that she’s been challenged in a way that we didn’t realize and still she’s managed to develop and learn. She’s already overcome a drug overdose that would have killed some babies and she’s just going to have to overcome all the unfortunate symptoms of Costello Syndrome. Poor eye sight included!

So now I guess we go back to enjoying our baby and taking joy in all her milestones. We’re trying to stay positive and keep on doing what we need to do but to be honest it’s hard on a day like today.