Last week Ali had an appointment with her pediatrician. She showed off by waving to him when he said good bye and shaking her head to say “no” when he tried to examine her! She’s funny and she knows it! The only major concern right now is with her heart. We’ve noticed an increase in sweating and some congestion so that’s definetely something to get checked out immediately.

Yesterday Ali had her very first clinic day with her psysiatrist at the rehabilitation hospital.

We travelled into the city on Wednesday night because our appointment at the hospital was so early on Thursday morning. Ali was very, very sick on Wednesday and taking her into the city was really horrible. She was coughing and gagging all the way and she was sweating so much that she looked like she’d swam into town. She has just gotten over pink eye so were are assuming that she just has a nasty cold but despite an intital “okay” result on an ECG, we are still very concerned about her heart. We are waiting for the more results to make sure that her heart is okay right now.

Once we got into Edmonton we headed straight to our hotel and put both girls to bed to prepare for an early morning the next day.

We got up bright and early and Ali was a mess. Jason took Madi down for breakfast while I stayed in the room and tried to get Ali ready for a really big day. She couldn’t keep any food down and was still super sweaty so I gave her lots of Advil and did what I do when she’s sick. I fed her water instead of formula.  Typically when nothing stays down, we need to rest her stomach. The water helped a bit and she seemed to perk up so off we went.

What a confusing place that hospital is.

We started our day at x-ray where Ali had lots of “pictures” taken. She was such a good girl and she was finally happy too, her water diet seemed to be helping a lot.

After x-ray we made our way to the clinic waiting room (that was no easy feat!!!)and waited our turn. Before long a nurse came to get us and we were given our room. I was told that Ali and I would just sit there and all the specialists would come to us. It was pretty dry in there, someone remind me to bring some coffee with me next time okay?

First we met with the Physical Therapist. Over all she thought that Ali was doing pretty well. She agreed that Ali seems to have a severe gross motor delay but she thought that Ali’s fine motor skills were pretty decent all things considered. She mentioned that a lot of the more “cognitive skills” fall into fine motor at this point. Based on previous evaluation, Ali falls below the first percentile for gross motors skills but she’s at the 12th percentile for fine motor which we feel is okay. The PT decided that Ali needs a standing frame so we talked about that too.

Next we saw our Social Worker. We chatted for a minute and then it was time to see the Physiatrist. He came in and brought a prescription for a standing frame for Ali and did an examination. He concluded that she looks pretty good. We decided that Ali would be fitted for “AFOs”
(Ankel Foot Orthotics) because of poor foot positioning and lots of ankle roll.  Ali showed her doctor how well she sits, he said that she sits well and that he estimates that she may walk around 30 months. That is much earlier then we expect her to walk but it’s something to aim for I guess! Once again he commented on her VERY low tone, he also said that she’s very strong and that her head size makes things tough for her because it makes her so top heavy. He had no major concerns. He was very taken with her and he told me how much he liked her!

After brief introductions to a couple of other people we met with the Orthopedic Surgeon. I think she was very surprised to find that Ali has no significant orthopedic issues. She said that we hit the Costello Jackpot in regards to orthopedics.

Next we went and got casted for AFOs. I think that was the most traumatic part of the day for Ali. Putting slimy casting material on the feet of a child with major sensory issues (and a cold to boot) must never turn out well. Ali put up quite a fight! We picked out sky blue AFOs with clouds and butterflies on them.

Then we got measured for her standing frame. Because Ali is so small, her standing frame will be custom made for her. It will also be made to accommodate her G-tube and she’ll be given a bigger base to accommodate her top heavy (but super cute) little body.

While we were at our appointments, Jason was picking up Ali’s new car seat. She finally out grew her bucket seat (in length, not weight) and we got her a car seat that is recommended for children with low tone. She loves it but she looks so tiny in it. We headed for home with Madi happily watching a movie and Ali sound asleep in her new car seat. It was such a busy day but it went really well.

This morning Ali woke up very sick once again, so today I’m concentrating on getting her back on her feeds and keeping her hydrated. We have a big week next week so she needs to feel better!!

Thanks for reading!