We called her our 'little snow hobo' because she was so mismatched!
She was queen of the mountain!
All 3 of my snow bunnies!
Everything went great at this appointment- they did a screening to check on various areas of development (social, verbal, fine motor, gross motor, etc.) and Ally's right about where she should be with everything! However, we did hit a snag at the end. When the physical therapist took off Ally's shoes to look at her orthotics, she was concerned because what Ally had on was NOT what the therapist had intended for her to have. She pulled out her phone and showed me pictures of an othotic called Sure Steps, which looked very similar to what Ally had except it didn't go all the way from heel to toe on the bottom, but stopped about where the arch of the foot is. She told me they were designed for kids with low tone (what Ally has) and enables them the use of their toes more for jumping and other movement. Not only were her orthotics not what she had wanted, but Ally was coming close to outgrowing them, and she'd only had them for about 6 weeks!
Needless to say I was pretty frustrated with all of this, and I'm still not sure why this problem ever began in the first place. Our physical therapist was the one who made the referral to the orthotics place and communicated with them, so it must have been something between her and them that got misunderstood. I don't remember the physical therapist ever using the term "SureSteps" with me before we got them originally, but it was easy enough to remember so if I had heard it I would have asked them about it at the initial appointments. The therapist said she would call them about it.
A week or so later we had an appointment and went in to see the guy who fitted Ally originally. You probably don't remember from the previous post but when Ally finally received the original orthotics I messed up the appointment and came a week early, but they squeezed us in- with a different person, because the guy we usually see wasn't in that day.
So he asked what had happened and I said I didn't know how the mix up had happened. I also told him about the other guy cutting the toe line of Ally's orthotics really close to her toes and not leaving a lot of room for growth. He agreed, and said he usually left about a quarter of an inch (I think) at the toe to allow for growth. When you looked at the bottom of her foot with the orthotic on, you could see her sock already over the toe line. She had definitely outgrown them.
So he took some new measurements (no cast needed this time, just a few measurements of various parts of the foot) and told me they would take care of it, no charge. Thank goodness- we had gotten a grant from Easter Seals for the original orthotics so I didn't think we'd be able to get it again, and they were not cheap!
So a few weeks later we went back and got them. Immediately I could tell a difference- Ally started wiggling her toes once they were on! I think she likes these much better than the others anyway. We've had no issues with them since.
Ally's new orthotics: Sure Steps! We went with a flower pattern this time, but stuck with purple of course!
We went back to neurosurgery in September and saw Ally's actual neurosurgeon this time. Everything was fine, but he did say he would like to do another MRI while we knew her shunt was working well so we could have comparison images for later. After playing a lot of phone tag with the hospital, we finally connected, and then they had to contact Ally's insurance to get approval. In December we got notice they had scheduled it for January 4th.
The 4th was a Monday, but a workday for me, so I was able to take off easily and take her for the MRI. It was scheduled for 10 AM. The frustrating thing about the time was that she was going to have to be sedated for the imaging- which meant no eating and drinking beforehand. I was NOT looking forward to the cranky toddler I'd have to deal with for several hours who would not understand WHY she was not allowed breakfast. However, I was able to distract her beforehand fairly well. I had kept her late (and kept offering her food!) so she got up a bit later than usual. Then we took Luke to school (he normally rides the bus but we had to deliver something rather big to school with him) and went to the vet to visit our cat, Logan. SIDE NOTE: Unfortunately, later that same day we had to put Logan down. He had urinary blockage and after everything the vet had done his kidneys were shot. The child this affected most was Ally- she LOVED Logan! She would see him and yell "Kitty!" and hug and love on him (sometimes a bit too much, but he tolerated her well). A week later when I brought home the empty carrier, she came running over looking inside and crying "Kitty!" with delight. I had to tell her no, kitty is gone now. We had all gone and said our goodbyes to him, but of course she didn't understand that.
Anyway, back to the MRI. In spite of not being able to eat, she did EXTREMELY well. She only asked for food a couple of times at home after the vet visit (she would walk to her seat and say "Eat!"), and I would say "No, not yet- come on let's go _________!" and she would!
We got to the hospital around 9:30 and I went to check her in. We were in check in until almost 10:00 (her appointment time); it took forever! We finally went up to the imaging floor after getting checked in. They took us back pretty quickly and told me what to expect. We got to talk to the anesthesiologist next and she told me what would happen. I was a little surprised because she said I could stay with her until she was asleep (she would have a mask) and then I would go out for the procedure and they would come get me when it was over. When she had the first one done when she was a little over 2 months old Russell was with her and he basically had to hand her over and walk out. I was glad I would get to stay with her until then.
By now it was close to 11:00, and Ally was getting pretty sleepy anyway. We sat down on the cot for the machine itself and the anesthesiologist put the mask up to her face. She didn't protest at all! She was asleep pretty quickly and they got her laid down on the cot ready to go into the machine. I gave her a kiss and snuggled her bear we had brought beside her and walked out.
I ate lunch I had packed in the waiting area and talked to my Mom and Russell on the phone. They came out after awhile and said she was done. When I went in, the nurse was holding her and she was all upset and crying on her shoulder. I think she was just so out of it- she was hungry and tired but they had just woken her up again! They took us to a hospital room to recover. They brought her a juice box and some graham crackers. She didn't seem too interested in the crackers for some reason so the nurse asked "Does she like goldfish?" I told her "If you bring her goldfish you'll be her best friend!" So she came back with a bag of goldfish and turned the TV on to Mickey Mouse Clubhouse and she was happy! They had to watch her for 30 minutes and make sure she ate and drank okay, and then we could leave. Ally of course did stellar and we were out of there pretty quickly and made our way home (and to the crib for a real nap!).
We had a follow-up appointment with neurosurgery just last week to take a look at the images. Everything looked great- he showed me where the shunt was in the images and her dandy-walker 'cyst' (fluid). We also looked at her corpus collosum (the part of the brain that connects the two halves): when she was diagnosed in utero they said that it might be small but imaging after she was born would be a better indicator. I am happy to report that Ally does NOT have agenesis of her corpus collosum, meaning she does have it and it looks pretty normal. Not that finding out she didn't have it would have been some devastating blow or affected us or her in any way at this point (she's doing great, not like it would affect her 'now that we know'), it's just nice to know what the diagnosis is!
Ally had another adventure of her own just a few days before the follow-up appointment. She stays with Russell's parents while we are working, and she took a little fall at their house off the arm of a chair and smacked her head on the floor. Of course this would be alarming for anyone, but especially someone with a shunt. Also, after the fall she vomited twice and was a bit in a daze, so Russell's mother called the pediatrician's office and they told her to call an ambulance and get her to the hospital. However, true to form, Ally perked right up when the firemen and EMTs arrived! Luke was off from school that day and was staying with them too, so they all got a ride in an ambulance. I left school early and picked up Ben and met them there. (Russell unfortunately was out of town with work, which was driving him crazy!) Honestly, if my mother-in-law hadn't told me what happened, I'm not sure I would have believed it the way Ally was acting! All 3 kids were all over the room driving us crazy! The doctors told us they didn't want to do any imaging (to avoid overexposure to radiation) because it didn't appear that any damage had been done to the shunt, and even if she did have a concussion it was probably mild and wouldn't show up on imaging anyway. They wanted to just observe her for about 3-4 hours after the incident- and since she had a shunt they wanted to push it to the 4 hour mark. We left close to 6 PM after her fall around 1:30 PM. For the ER, it could have been a lot worse! So that was Ally's first ER adventure- hopefully the last for a LONG while!
Thankfully the follow-up with the neurosurgeon was just 2 days later, so he felt her shunt and said it seemed to be intact. He also said it was really common for kids to be dazed as Ally was after a blow to the head. She may have had a mild concussion, but we haven't seen any other affects from it since then.
Otherwise, Ally continues to grow and thrive! We have her in a music program called Busy Beats. It is done through Easter Seals and is a lot like Melody Makers, but is run by a licensed music therapist. She writes goals for each of the kids and sends take home ideas and gives 'discharge summaries' at the end of the session. Russell's parents take her to Busy Beats because it is once a week during the day and say she LOVES it! She was really shy at first, but the music therapist says she has really become a leader in the group and is doing really well. She met most of her goals for the first session, and she is now in her second session this winter. Russell's mom also takes her to storytime at the local library. Ally loves books anyway and storytime intertwines books with music and movement. Russell's mom says she has become much more involved during storytime as well. We are so proud of our girl!
We are hoping that Ally will start preschool at Ben's school 3 days a week after she turns 2 until the end of the school year. However, we aren't sure if there will be a spot open for her then, but she's already on the list for starting 5 days in August! She has gone to the school a couple of times recently as we've picked up Ben and all of the teachers just fawn over her! I can't wait for her to go there too!
Thanks so much for your continued interest in our girl! Please check out Ally's friends page- we have some links to the pages of others who are in this fight too (many harder that we are) and could use your support and prayers as well.
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