Last week was a busy week for us. Tuesday came with a half day for me and then I met Ryan at Juli's school for her IEP meeting. It had been 3 years since her last meeting to start her in preschool (I still can't believe she's going to be 6!), so this meeting was her 3 year re-eval, complete with all sorts of testing that was done. We were there for just over an hour and a half. On the good news front, Juli was dismissed from Physical Therapy- she mastered jumping on one leg with both her dominant and non-dominant leg and that pretty much booted her from PT. She will be continuing on with OT and Speech, as her fine motor skills are lacking and she continues to need help in speech. They also added on to her resource time and she will now be pulled out for reading as well, and not just for math. I was relieved they were adding the reading onto that, as she struggles quite a bit with her word wall words. They also kept her diagnosis as developmental delay instead of going with learning disability as this will allow her to get the most help possible for right now, and we were okay with that.
Thursday, all 4 of us had to get up super early, because it was MRI day and we had to be at Lurie's Childrens Hospital (formerly known as Children's Memorial) by 7 AM. I felt badly Noah was missing a day of school, but our day care doesn't open until 6:30 and we were on the road by 5:45 (good thing, because we didn't arrive until 7:05 due to traffic). The new hospital is really nice compared to the old Children's we used to go to when Juli was much smaller. When we checked Juli in, the lady behind the reception desk immediately produced 2 big bags for both kids, containing coloring pages and crayola crayons. Both kids sat down at one of the kid tables and started coloring. When Juli got called back, all of us got to go back with her, where we put her in her gown and answered a bunch of questions. Then, one of the nurses showed her how to work the remote to the television and helped her select the movie of her choice from the movie channel- Frozen, of course. Just as we got to the "Let it Go" scene, they came and had us move back to the next room where we met the anesthesiologist, a young man who Juli instantly bonded with (before that she had been pretty glued to me). He asked her what flavor of gas she wanted, and she chose bubble gum. Then he asked her how many candles were going to be on her next birthday cake- she said 100. He told her that she looked good for almost 100 years old, and Juli replied, "well, I'm really only going to be 6". Then he asked her if she was ready, she said, "yes", jumped off the table and didn't look back at us. He held out his hand and she grabbed onto it. Just like that she was gone.
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Up at the "buttcrack" of dawn |
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Coloring in the waiting room |
The 3 of us returned to the waiting room until they called me back to the recovery room. Just like the last time she came out of anesthesia, she was screaming- it broke my heart. This time she was a bit more violent and was thrashing about in the bed while she screamed. The nurse let me climb into the bed with her and I held her while she screamed and hit and kicked me. Eventually she calmed down and they let Ryan and Noah come back. Then we got her dressed and Ryan carried her out of the hospital. Since she wasn't allowed to eat since dinner the night before, we let her pick lunch. She chose Portillo's because she wanted a milkshake and french fries. When we got home she took a 3 hour nap.
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Watching Frozen |
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All done for the day |
On Monday, we had a snow day, which was nice, because I was going to have to take another half day to take Juli to see her Developmental Pediatrician at the Children's clinic at Central DuPage Hospital. The roads were awful, so the drive was not fun. Her doctor is a very nice lady and she looked over all of the test results from Juli's IEP meeting, along with all of the papers we had filled out prior to the appointment (we had seen her several years ago, so some things have changed developmentally for Juli since then) and she spent over an hour with the 2 of us. Some positive things came out of the visit- she agreed with me that the OT that Juli is getting through school is not enough and gave us a prescription for private therapy and she is sending us for some testing to try to answer some of her questions before she can fully determine what is going on with Juli developmentally.
It is a bit overwhelming to be back in this boat again after having 2 years of relative calm, but we want to do everything in our power to make sure that Juli can be successful not just in school, but in everything that she does.
My Juli is the bravest little girl I know!
ReplyDeleteI'm so sorry life isn't just an easy walk in the park for Juli (or all of you). God certainly knew what He was doing when He gave Juli to you, Ryan and Noah. You help her thrive in the midst of the circumstances she is dealt and your love for her is amazing! Thanks for giving us a peek into your life. I hope you all can experience some calm again.
ReplyDeleteThanks, Tristi :-)
DeleteSounds like she was very brave and did well! Sending non awkward virtual hugs your way!
ReplyDeleteWe have faith that God knows what therapist she needs and when it will happen. Praying for just the right person. Love Mom
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