Once again Ali proved exactly what she’s made of! Today, she took a few very tentative steps on her own. I’m hopeful that she’ll be able to walk soon! I’m so proud of her!
All posts by Bobean's Mom
This is all about me. Orginally Posted March 6, 2012
I know it’s been a long time since I updated. Sometimes it’s hard to find the time. Honestly, sometimes it’s hard to find the right words because while Ali is doing REALLY, REALLY well and I am happy with her progress there are still many, many times when I really struggle. I’ve had many people say, “Wow, You’re so strong”. But to be honest I’m strong when I have to be. I’m strong when I tell people all about Ali’s triumphs and successes because to tell people how hard it is feels like I’m complaining about Ali. I would never do that. I struggle all the time, not with what she can or can’t do, not with the huge commitment that we make to her therapy and feeding, not with her general health or with the number of medical appointments but with the chance of losing her to cancer. There are so many aspects of her life and her needs that I can control to some extent but I have no control over whether or not she gets cancer. I try to tell myself that she’s doing so well that she won’t get cancer but the fear literally takes my breath away. After her second birthday I started to worry a lot more, which I didn’t think was possible, because between the ages of 2 and 4 is when the majority of the tumors happen. It keeps me up every single night. I lay there and wonder what’s going on inside her body. I try to interpret every little change in Ali, every little symptom. I read blogs written by other Costello Syndrome parents who have lost their kids to cancer or who have children who are fighting it now and it’s hard to breath. Now, I know what you’re thinking, “Don’t read the blogs”, right? I read them because I’m trying to find a reason to believe that their kids are different then Ali and that Ali won’t get sick but their kids aren’t different from mine. It’s just bad luck and it sucks!
Anyways, now that’ I’ve told you all about me, let’s talk about Ali. She’s doing AWESOME!
She is managing to stay very healthy this winter. She has learned to walk with the assistance of a pediatric walker and is loving the independence. She loves to walk up behind me and hug my legs and look up at me from down by my knees and say, “mmmmmmmmmmmmmmmama”. She melts my heart! She has taken to scooting around a bit on her bum rather than rolling and yesterday she scooted up to me while I was sitting in a chair and she pulled up on my pants! I know it’s hard to believe and I wouldn’t have believed it myself if I hadn’t seen it. Jason even got to see the big event (so I have a witness). We went to the pediatrician last week and he was amazed with our girl. I’m so grateful for that. I’m so happy that she is doing so well. I have huge hopes for her! She is truly an incredible person and I am honoured to be her mmmmmmmmmmmmmmmama!
She’s turning Two. Originally Posted December 19, 2011
Hi Everyone!
I wanted to let everyone know that Ali got great results on her MRI that was done last week. Her results were normal and she recovered like a trooper from her anesthetic! Please keep her in your thoughts tomorrow morning as she goes in to get screened for malignant tumors.
Wednesday, December 21st is Ali’s birthday! It’s been two years since that cold snowy night when Ali was born and it’s been two years since we almost lost her to a drug overdose, soon it will be two years since we found out that she has Costello Syndrome.
We have a new normal now, a normal that often doesn’t feel normal at all but for us it is. Ali has come so far in two years, way further than we expected. A lot of children with Costello Syndrome don’t make it to their second birthday, it’s hard to imagine a world without Ali but there were days when that was a real possibility and now she’s a happy, loving little girl with so much to give to the world! I want to shout it from the roof tops that my baby is two, she’s a big girl now! She made it!
The past two years have been years of extremes. I’ve gone from being so worried about test results that the world has started to spin and fade away from me to being so overjoyed by one of Ali’s incredible firsts that all I could do was cry. I know that the worries will remain, I still worry every single day that something may take her from us but I also look forward to the firsts that will come, to the look in her eyes when I grab her from her crib in the morning and to the way it feels when she wraps her arms around me and squeals with delight when I pick her up.
Happy Birthday to the strongest little girl I know. I don’t know what we did to deserve her but she couldn’t be more special to us!
Some Great Times! Originally Posted November 23, 2011
So with Ali’s 2nd birthday approaching quickly, I’ve been thinking a lot about how far she’s come in her two short years! Ali is turning into a truly amazing little person and she has been doing very well over the past few weeks (aside from a nasty flu followed by a dreadful cold).
Ali has been working very hard on learning all her developmental skills. She now scoops food out of a bowl and is able to bring it to her lips for a little taste. She still doesn’t swallow anything I don’t think but she certainly has demonstrated that she has the motor skills to feed herself when the time comes! Ali is working very hard at learning to walk. She can walk quite nicely while holding on to Mommy’s or Daddy’s hands and she really enjoys practicing! She will never crawl, she’s much closer to walking than crawling so we can skip that step. We are fairly sure that she could stand unassisted for a few seconds (while wearing her ankle foot orthotics) but she is quite nervous about trying and as soon as we let go she reaches for whatever she can grab. She could probably stand all afternoon while holding onto something (like the coffee table). Ali has also gained an appreciation for colouring. She will quite happily sit in her high chair and “doodle” with Madi for a few minutes, although she also attempts to eat her markers.
Ali has recently been assessed by the CNIB again and they thought that there was dramatic improvement in her vision. She responded properly to simple commands, made good eye contact, showed off her fine motor skills and throughly charmed to therapists. I think her finest moment was when they showed her pictures of other children in simple poses (like hands on top of their heads) and Ali imitated them! I almost couldn’t believe my eyes!!!!! The vision therapists said that Ali is using her vision to its fullest extent and that she’s doing great!
We’ve also had cardiology follow up recently. Ali’s heart condition appears to be stable.
Ali went to her pediatrician last week. I didn’t really have any concerns so he played with Ali and her favourite doll for a few minutes and then he looked at me and said, “My God, is she ever high functioning!” I think with that comment he made my year! This is the same doctor who led us to believe that she’d probably be fairly low functioning so to hear him say that was amazing! I am so proud of my little girl and of how well she’s doing!
Today Ali learned a new game. I decided to play hide and seek with her. I would run and hide around a corner and yell, “Hey Ali, come find me”. Then I would hear the tell tale sounds of Ali running in her walker and soon she would be parked right in front of me screaming with delight! Madi joined in and the three of us played hide and seek for well over half an hour. It is so important to appreciate the little things in life and having Ali participate in a family game of hide and seek was awesome!
Ali will be admitted to the hospital on the morning of December 12th for a sedation MRI. We need to check the structure of her brain to make sure that there is no crowding (Chiari 1 malformation) or hydrocephalus. This procedure will require either a 1 or 2 night hospital stay because of her risk factors when undergoing sedation. Please keep her in your thoughts! We also have an ultrasound coming up on December 20th to screen for cancer. Please keep ME in your thoughts for that because I’m a little paranoid these days! 🙂