Today I had to take Ali to the Emergency Room because she was having trouble breathing and had a horrible cough.  Last night was so scary.  She really struggled.  The poor little thing either has croup or her throat is swelling up again from when the P.E.G. got stuck and she had to stay untubated for so long.  Either way, Ali is really, really sick yet again.  She has been given steroids and we will repeat her dose again tonight and see where that leaves us. We may be headed back to the Stollery if the steroids don’t make her feel better.

Some people have the worst luck and poor Ali seems to be gifted with worse luck then anybody else I know.

We started off the day by getting weighed and measured.  Ali, being the little fighter that she is, showed off how well she can tolerate her feeds now by gaining 6 ounces and growing 1.5 cm this month! She remained on her curve for the second month in a row!

After getting weighed and measured we had some time to spare so we had lunch and took Ali for a little drive. She was obviously hungry but she tried so hard to be a good girl and she hardly cried at all.  She was fasting because she was undergoing anesthetic to have her P.E.G. tube replaced by a more permanent MicKey.  By the time she went into surgery she hadn’t eaten for over 12 hours.

We checked in for surgery at 1:30 and had to wait until about 3:00 for Ali’s turn. We killed the time by playing and snuggling, Ali was in a great mood for such a hungry little peanut. Jason walked down to the OR with Ali, and then when he came back we went to have a coffee. We were told to expect to be paged in 30 – 45 minutes and we were.

When we arrived back at the Day Ward we were told that Ali wasn’t back yet, she would be admitted overnight, that the Gastroenterologist and the Anaesthesiologist wanted to speak with us and that we were to wait there for them. Weird! We waited for a while and just before 5:00 we asked the nurse to call recovery to ask if Ali was there yet, at that point we found out that she was still in the OR as were her doctors. So two hours after her 30 minute surgery started she was still in there? My heart sank, I was so worried. So there we were sitting in those chairs with no idea what was going on. I can’t really describe how I felt, my baby was somewhere in the hospital in trouble and all I could do was sit and wait. I knew that it was a simple procedure and that she was with a great team of doctors but we have already learned from experience that people make mistakes . Things can go wrong in the blink of an eye. Maybe it was an overreaction but I sat there and wondered if after all that we had been through if this was how it was going to end? Eventually the Gastroenterologist came out and very quickly we established that Ali was indeed okay. He had quite a story to tell though.

They tried to pull the P.E.G. out through Ali’s stomach wall and it wouldn’t come out. It caused some bleeding so they decided to pull it up and out through her throat instead since that’s the way they put it in. It got stuck. They couldn’t pull in out and when they went to push it back down into her tummy they realized that they couldn’t do that either. It was stuck in her throat. They tried for a while to move it and I guess it soon became apparent that it wasn’t going to budge so they called an E.N.T. . He used some special equipment to remove it. Once they removed the P.E.G. they went back into Ali’s throat and stomach to look for damage. They didn’t find any but her throat began to swell and they were worried that she wouldn’t be able to breathe.  She was given steroids to reduce the swelling and remained intubated until they were sure that she was okay. Once the steroids had done the trick she was woken up and brought to the ward.

When we were finally reunited with Ali it was in the room where she almost lost her life 10 months ago. There she was all snuggled up in the exact bed where I watched her day after day struggling to survive her drug overdose. I sat there and I watched her sleep and remembered those lonely nights when I was afraid to take my eyes off of her because I thought she was going to die. I remembered how hard it was to watch her scream and cry as she underwent painful and scary procedures and I remembered sitting in the chair as the resident told me that she’d been overdosed on Digoxin.

I thought I’d come a long way since then, I thought I’d healed and that we’d all moved on but I can tell you now that there’s still a lot of healing left to do. It felt like it just happened yesterday. I thought I was going to lose her then and for a while yesterday I had the same fears and I find myself wondering when, not if it’s going to happen again. You see that’s the thing, she survived that drug overdose and the P.E.G. came out of her throat but she still has Costello Syndrome. I can lie in bed and make bargains with God every night but when I wake up in the morning it’s still going to be there. There a lot of things in my life that can be fixed with hard work, positive thinking and determination but my daughter isn’t one of them.

What I realized last night was that what I remember most about being in the hospital with Ali after she was born was looking forward to the future and putting everything behind us, to just going home and being normal again and not having to worry all the time. That never happened and I don’t think it ever will.

I think it goes without saying that I’m thankful that Ali didn’t die in December. The fact that she survived her drug overdose given everything that she was up against is nothing short of a miracle. Not a day goes by that I don’t remember how much we almost lost. I am thankful for all the friends and family that stepped up and helped us through the most difficult weeks of our lives and that continue to offer assistance now. I am thankful for the people that took care of Madi and for the people that spent hours on the phone with me during my darkest moments and for those who came to the hospital to offer support.

I think it’s amazing that so many people give of themselves for Ali and for us. I can’t believe that so many people log onto this blog and read about our girl and offer kind words of support. So I am thankful for all of you that are cheering Ali on at every step. Some day when I read all of your messages to Ali she is going to know how truly loved and cared for she is. She’s going to know that she has always been surrounded by people that care about her even though some of them have never met her and that every step of the way people are cheering her on. I’m happy that so many people take joy in the small steps that Ali makes and that people see how truly amazing she is. I am thankful for all the people that love Ali because she’s Ali and that see a beautiful little girl when they look at her regardless of any syndrome or diagnosis. Madi and Ali are the greatest gifts I’ve ever been given and I‘m so thankful that I can share Ali with all of you. Our family is blessed to have so much love and support so thank you to all of you and happy Thanksgiving.

I think back to when Madi was 9 months old and she was so different then from how Ali is now. I can’t help but wonder how things would be different if Ali didn’t have CS. Would she be sitting and crawling and going through all my cupboards like our beautiful little Madi did? Would she be able to polish off an entire Avocado in two minutes? Would she love sweet potatoes and hate peas? Or would she be a totally different from her big sister anyways? I also wonder about myself, Jason and Madi. Who would we be today? Would we realize how lucky we are? Would we realize the joy of the small steps? Would we value the things that we value today? I guess some things we’ll never know but I can honestly say that I have now gotten to a place where I don’t think of those things with regret anymore. I remember Madi fondly getting into mischief at 9 months and I just accept that Ali isn’t there yet. I firmly believe that she will get there, in her own time and that’s okay even if it takes years. Our little Ali is such a determined little thing that one day she will drive me nuts just like my beautiful Madi does. I’m sure of it!

So anyways, Ali went to the pediatrician today and he was absolutely thrilled with her progress. She has grown both in length and weight (16 pounds and 66 cm long) and for the first time has managed to grow a “typical” amount for the month! She is still small (10th percentile) but hasn’t lost any ground since our last appointment. The pediatrician seemed thrilled with her development in all areas. He asked if she reached for toys, could pass from one hand to the other, could vocalize and roll over front to back and back to front and I got to say yes to everything (although her rolling technique really stinks!). She’s still not sitting independently or making vowel sounds but hopefully that will come soon. The most amazing thing is that she’s really engaged with her environment these days. She attempts to roll over (hit or miss as to whether she makes it)when she wants to see what is going on behind her and she’ll roll from side to side to retrieve toys rather then just crying for help. She smiles and laughs at Jason and Madi’s craziness rather then crying and when her eyeballs cooperate she watches them play. She is becoming an amazing little person and we are so happy for her and for us!

We are going to be going to a rehabilitation hospital to have an assessment done (Physical Medicine) just to make sure that we are covering our bases but at this point we don’t expect that any serious problems will be discovered. We would like to have access to the seating clinic at this point! We are also going to really concentrate on the tone in her legs, bum and abdomen as that seems to be her weakest area right now. She still doesn’t really have any strength in her legs.

Anyways, it’s been a good day. As I was leaving the Pediatrician’s office today the doctor told me to aim high and that’s what we’re going to do.