I usually try really hard to be strong and to let the world know how amazing Ali is and how proud I am of her but right now, I’m frustrated and to be honest, I’m devastated. I’m trying so hard not to be because that will only make it worse but I honestly want to give up. One of the main aspects of feeding therapy is to keep it fun, not push too hard, not force it but I don’t know how much longer I can do this. Every meal in this house is a huge event. There’s a meal to prepare for the rest of us and then there’s puree for Ali and things to dip in the puree and crumbs to dip the purees in and throughout the meal we encourage biting and dipping and licking and we also work on drinking. Once the meal (or snack because I do this at snack time too) is cleaned up and believe me, it’s a huge mess, then we tube feed her. She gets a homemade blended diet with lots of real foods and supplements. Then we do it all again, usually 5 times a day. Between all this, there are other therapies to do, household chores, another child that has needs of her own and two dogs.

So there you go, the success is great but the setbacks really hurt and they are sometimes really hard to recover from. People keep telling me that I should still be happy, after all, I now know that she can swallow and I know that the goal is achievable. I understand how people could see it that way but if you don’t live my life than you can’t possibly understand how discouraged I feel right now. It’s like playing in the Stanley Cup Final and losing in a game 7 shootout, who cares if it was achievable or not, it’s gone and to bring that cup home you have to start all over again. Only that’s a game and this is our life and this is my full time job. I feel so much pressure. We are responsible for making sure the one day Ali eats like the rest of us, it won’t happen all by itself and it literally takes hours a day to move her towards achieving that goal.  To have a huge set back like this right after having such a huge step forward honestly makes me want to quit. I won’t though. I have to find some way to hide the frustration and sadness and keep on doing this because if I stop or I get frustrated or mad then I’m going to set her back further. I need to find some way to pick myself up and keep going and sometimes it’s really hard. This is really hard.

On top of that we are going through a funding transition. Ali is now eligible for Program Unit Funding which is given to the school board to help prepare children to enter the school system. When a child becomes PUF eligible they lose services that aren’t given through PUF. The theory is that you use the PUF funding to rehire private therapists but in small towns there is no one to hire. So the CNIB transferred her to a different department and we lost our vision therapist, I can’t find one to hire with PUF so now, Ali will go without but that’s not a huge deal. The big issue is that Alberta Health Services does not provide therapies to children who our PUF funded so we are going to lose our speech therapist and we’ll have to either have an SLP from the city see Ali by video conference or use two thirds of our funding to pay one to commute from Edmonton. I have been fighting with AHS but it’s time to give up that fight because every time they give me a loophole and I manage to squeeze through it, they take it away. I have no doubt in my mind that they owe Ali this service (because for Ali her oral motor skills are a health issue, not just school readiness) but they’re not willing to budge so that’s that. The reason this is such a huge problem for me (and will be for Ali) is that over the past year, Ali’s feeding therapists and Speech therapist have worked very closely and we have seen so much progress in both feeding and speech and I am afraid that losing a valuable member of this team will set her back. Her oral motor issues are all so closely related that our therapists have to work as a team to see progress and we’re breaking up that team at such a critical time. I have a child with the worst speech delay a child can have, her oral motor skills are so bad that she’s completely tube fed and yet it is the opinion of AHS that her speech issues are not their problem regardless of whether or not we have the ability to find her a similar level of care elsewhere. Especially now, when I am so discouraged, changing service models and losing our SLP feels like the end of the world even if it’s not.

I am lucky to have two amazing children and I know that. I am happy to stand beside Ali through everything and if I have to spend my life doing therapy with her I will because that’s what moms do. I’m so proud of her and whether or not she’s eating, she’s amazing and I love her to the moon and back but what I need right now is another step forward because these backwards steps are too hard to deal with.

Normally I don’t write posts like this but I’m trying to find a way to get back on track (me, not Ali) and I thought sharing might help. So thanks for reading. 🙂

Ali started eating!  I almost can’t believe it.  I knew she could do it because I believe that Ali can do anything! She really did it! She started eating!!

I sat with Ali on the kitchen floor last Sunday and she ate yogurt from a spoon.  She just sat there and kept on eating and then it was gone.  She ate it all.  She finished her yogurt and stood up and walked away and I just sat there feeling like an enormous weight had suddenly been lifted from my shoulders.  I can’t describe what it felt like. I put my face in my hands and cried. I’m sure Jason thought I was nuts sitting in the kitchen sobbing but I’ve never felt anything like that before. Eating has seemed just out of reach for a very long time and although I know that we seem to be a well oiled tube feeding machine, the concept of actually having to teach your child to eat is a scary one. It’s stressful and I’ve constantly been thinking about what we need to try, to change to get her to eat. This is life changing for all of us!

Since Sunday, Ali has eaten three yogurt tubes and a vanilla pudding! We obviously still have a long way to go, this is a long road to travel and I’m sure we will have many battles along the way but this step is huge. I’m so proud of my baby! What an incredible, amazing little girl she is!!

Thank you so much to each and every person that has donated to the Costello Syndrome Family Network on Ali’s behalf. We appreciate it more than you could know. The CSFN has truly changed our lives and they provide connections with other families and doctors that are incredibly valuable to us.  These connections help to ensure that Ali stays healthy and happy. Having a child with a rare, life limiting syndrome is really hard and having a support group to go to with questions is so important to families like ours!

Ali’s first year of preschool is coming to an end and with that, I thought I’d update everyone on her progress. She’s had a great year at school and she is doing so well! The teachers and staff at her preschool love her and in return she loves them! Wednesday will be Ali’s last day of preschool this year but she’ll be returning for another year in September and she lucked out, she gets to go to her school for two months this summer! She’ll be participating in the summer program for children with special needs and will be going to school 4 days a week for 90 minutes per day.

So with preschool testing complete, we now know how Ali is doing on paper! She has enormous strengths and enormous weaknesses. There are going to be some pretty substantial mountains to climb to get her ready for kindergarten but luckily she already has some valuable tools to help her along the way. Please keep in mind that all these scores have the potential to be affected negatively by her vision.

Her gross motor/fine motor testing was okay. She was tested by her occupational therapist last week and she actually scored higher than I expected but  we’ve still got some work ahead of us! She has come a very long way since she was tested at this time last year and considering she’s only been walking since December, she did great! It bugged me that she lost points for not stacking blocks so I taught her this weekend. She also couldn’t string beads so I taught her that too.  Sometimes with the testing, it’s just a matter of practice.  So, I think part of her low scores was that I hadn’t thought to teach her these things. These are things that typical children just do, they figure them out themselves or it only takes a few minutes to teach them.  Ali needs lots of repetition to learn and just when you think she’s got it, it’s gone! But with a little effort she can do whatever she sets her mind to (and for the record, I feel better that she did it!). During her testing, she demonstrated how well she walks backwards which surprised me and she kicked a ball like nobody’s business. I also realized that I should let her throw a ball in the house because that was on the test and I always say, “No throwing!!!”. I think she did really well considering everything that she has working against her but we definitely have some ground to make up!

We’ve also done her speech testing. This is where we found her enormous weakness and her biggest strength! Ali scored in the first percentile for “Expressive Language”, so in other words, she has the absolute most severe “Expressive Language Delay” that anyone could have! She has over 20 signs and she gestures and makes sounds and she’s great at telling us what she wants but still, she has some major work to do in that area as she scored at about an 18 month level. I think this delay goes along with her oral issues and is closely related to the lack of coordination that requires her to feed by G-tube. Again, she’s making a huge amount of progress both in oral communication and in feeding, we have no complaints but her issues are so severe in this area that it takes a long time! She’ll get there, this child will eat and she will speak but she’ll have to work for it because at this point it really couldn’t be much worse.

Now, let’s talk about her “Receptive Language”. Ali scored in the 63rd percentile in this area. What this means is that in a group of her peers, aged 3-4, only 37 would score better than her.  During this test, Ali demonstrated an understanding of vocabulary items including clothes, body parts, nouns and action words. She followed instructions without gestural support, she understood pronouns (so my, your, me), identified colours and matched items. So, I know that it is probably hard for people to believe that this little girl who doesn’t speak and often has trouble following through on certain types of instructions understands them but she does. She takes in the information, processes it and understands what is needed like any other three year old but often can’t do it because of motor skills, expressive language skills and vision. She also has a short attention span so by the time she’s got her motor planning in order to get a task accomplished, she’s often lost interest. My hope is that people won’t doubt how much she understands because she could end up getting upset or frustrated because people assume that she won’t know what’s going on when she does. I hope that she’s given credit where it’s due and it’s due in this area! When you have a child with the number of delays that Ali has, having her test in the normal range for anything, even just one thing is the most incredible feeling. We knew she understood lots and assumed that she was close to normal in this area anyways but to be right smack in that normal range is amazing and her score was high enough that it leaves no doubt.  She is normal here.

We’ve recently had our yearly cardiology appointment and her heart has remained stable. We saw the Pediatrician last week and he was thrilled with her progress as were the vision therapists at the CNIB when we went there recently. Next on our agenda is the Physical Medicine Clinic, a feeding team check up and a cancer screening in the middle of June. We are also concerned that her G-tube needs to be moved because she’s grown a lot since it was placed and her Pediatrician agrees with us so there may be a surgery on the horizon.

For us, it’s all about progress. She’s learning and developing. Ali is following the curves and learning things in the right order, she just does it at her own pace. As long as the progress doesn’t stop then we’ll remain incredibly thrilled with what she’s accomplished. She’s an incredible little girl and she brings such joy to everyone around her! We love that little girl to the moon and back!