Last week was a very long, but exciting week for our family. This was the week that we were making our final trip to Philly (for a while) and Morgan would be getting her casts off. Something she had been asking for everyday, several times a day. She would look at me and say "Mommy, casts off." I would just smile back and tell her "yes, in ___ days." We counted down each day awaiting the casts coming off.
Our long week began with Morgan and I leaving Tuesday morning for a day of work (for me) and play (for Morgan) at her grandparents. As soon as work was over and my sub plans out and ready I headed to Donna and Charley's to pick up Morgan and Donna. Donna was going to drive Morgan and I up to Phoenix and then stay there while we were in Philly so I wouldn't have to drive home Thursday night by myself (she really is the best mother-in-law!). So we loaded the car and headed to Phoenix.
Three long hours later (have to love PHX traffic) we finally made it to my Dad and JoAnne's house. My sister, Jen, and her two girls, Caity and Lindsey, were there too so we could have dinner as a family. Morgan was so excited to see her cousins again and her Pa and Nanny too. She just adores all of them and had so much fun!
In the morning we got up bright and early to leave for the airport. My Dad and JoAnne dropped us off and we were on our way. This trip we were stopping in Nashville, changing planes, and then going to Philly. It was a smooth trip with no major complications, just the usual challenge of changing a poopy diaper on a child with two long leg casts in that tiny bathroom. But we landed in Philly, and this time it was early, 6:30 PM. We made it over to our rental car and then headed to the hotel...so I thought. I was so concerned when driving about not missing my exit onto the 1 (which I missed last trip) that I accidentally got in an exit only lane to exit onto the 676 freeway. Panick set in for about 30 seconds until I realized it was the freeway I use going from the hospital to the airport so I kinda knew where I was. As soon as I was officially on the 676 I saw an exit for Broad St. (where the hospital is) and figured out where I was and how to manuver back to the 95. After that slight detour we were on our way again. Before heading to the hotel we made a quick stop at Target as we were already running low on diapers. I grabbed a few things, stopped at McDonald's for some fries and a coke (totally had a craving for that combo) and then made it safely to the hotel.
Since we arrived at a descent hour this time we actually got a little rest. Morgan and I put on pjs, read some books, watched a little of "So You Think You Can Dance" (Morgan loves to watch people dancing and she tries to dance along) and then closed our eyes. By 6:30am we were up and getting ready. We were also now counting down the hours until her casts would come off, 2 hours!!! After checking out we stopped by Starbucks for a much needed coffee and headed to the hospital.
When we arrived at the hospital we went through the regular routine of checking in, getting her bracelet, our visitor passes, and then heading to the 4th floor. Within a few minutes they came out to get us and took us to the casting room. At this point Morgan lost it. She started crying hysterically. She knew what was coming, the saw! I think she also thought that we would be putting more casts on. Jason, one of Dr. VB's assistants came in and sawed the casts off. A very kind nurse came in afterward and presented Morgan with a present as a prize for surving her casts. Morgan was able to choose from a book or a baby, a very tough choice for her as she loves both, but the baby won out. Instantly the very purple, girly baby became "Baby Yuke" as all her babies are now called (After Aunt Georgia and Uncle Matt's precious baby Lucas).
With baby in tow we now were sent over to the orthotic department. Once there we were shown to a room to wait for her braces to be fitted. Within a few minutes other people for the clinic started to arrive. As we were sitting waiting I heard one family walk past and the mom say, Oh, I think that was Morgan. A few minutes later another mom walked pasted and said the same thing, this time she was followed by her adorable little girl, Avery, who I instantly recognized by her curls. Today was a bracing clinic day and some families from our AMCsupport.org group were going to be there too! We were very excited to meet up with families from our group and have a mini playdate. Once we saw Avery I stuck my head out of our room and said hi to her mom, Jill. We then spent then next couple of hours in between brace fittings playing and visiting with Avery, Emma, Grace, and Anthony. Morgan had a lot of fun with the kids. She played babies, dressed up with Emma's beads, traded stickers with Grace, and oohed and aahed at baby Anthony. It was wonderful to have the chance to speak with other parents going through the same things and hear about their experiences. Jill shared some great tips with me regarding the braces as her daughter as worn the same ones for over a year now. It was also amazing to see how well some of the kids are doing, both Avery and Grace were walking completely unassisted. They were just amazing! In the group Morgan was definitely the talker! She had so much to say to everyone about everything. She may be shy at first, but once she warms up and she is not shy at all.
While all of this fun playing was going on we were also taking breaks to visit with Dr. VB and Jen, the orthotist. They had no problem fitting Morgan for her right leg brace. It slide right on without much trouble, it is just REALLY tight but they said it needs to be in order to work properly. The left leg as always is a whole different story. Her left knee is really funcky and not alligned properly as most people, including the doctor's here in town assume it is. So when the orthotist went to put on the brace she totally put her knee in wrong and started bending it the wrong way (just like what happened in town to cause all these problems). I started trying to politely tell her that she was doing it wrong and that where the smiley face was drawn was the front of the knee. She said "No, her foot is here, so this is the knee." A little more firmly (as my child is screaming in PAIN) I tell her "NO, this is where her knee is, her foot is not alligned. After hearing the tone in my voice she decided it would be best to take it off and wait for the doctor to come in. Sure enough in walks Dr. VB a few minutes later and what does he say "Mom, is right, her knee is here where I drew the smiley face." He then proceeded to try to explain to her that Morgan's tibia is kinda turned and her foot is alligned with the tibia but the tibia is not lining up properly with the knee. So.... now came the question of how do we fix this so the brace fits and her knee bends properly. They decided to remove the lower part, twist it a little and then put it back on. It is doing its job right now, but I wish they would just make a whole new brace. The upper thigh part just doesn't fit the thigh right because of where it needs to be placed and I feel like it keeps twisiting. Anyway, the braces are on, they aren't bothering her too much, and we are mainting the bend.
After fitting the braces and playing for a while we headed up to the 9th floor where we were told some Christmas activities would be taking place. When we first arrived up there around 12:30 nothing was happening, I think I missed the at 1:00 part of that message. So Morgan and I found a quiet seat on a bench off to the side and sat down for a snack. While enjoying her snack and waiting for the activities to begin the elevator door opend and who should walk out "SANTA." Morgan's face lit up, her eyes got real big, and she said "SANTA!" He spotted her right away and walked over to say hi. Morgan was exstatic. She wanted to sit on his lap right then and there. He said he needed to go get ready (which meant eat lunch) and that he would see her soon. She couldn't wait, for the next 20 minutes or so all she kept saying was "Santa, Santa". After finishing up her snack and cleaning her up we got up and started walking around, the activites would begin any minute. As we were walking around the elevator doors opened once again and this time two clowns got off. Again Morgan's face lit up! She was very excited to see them as well, my child has no fear of characters or clowns. One of the clowns stopped to say hi and gave Morgan a smiley sticker. We were then approached by a hospital employee and offered "Shriner's Dollars", some fake money they were handing out to all the children at the hospital. They had set up an entire Santa's workshop where the kids could shop for free with the dollars for gifts for siblings and their parents. Then they would even gift wrap them for the kids. It was really nice! I decided to decline the offer though as I didn't have any way of carrying more stuff home and Morgan doesn't have siblings. We just wanted Santa. So a few minutes later the big guy was ready. Off into Santa's lap she went without a fuss. The only fuss was when she had to get off. They took a photo and printed it on the spot and then had cute foam frames you could make for the picture. Morgan and I went over to make a frame and sat down with a volunteer named Ana. She was very nice and helpful and we chatted the whole time. After completing the frame Morgan wanted to say hi to the clowns again, she even let one hold her for a bit. We then spotted Dr. VB, so I went over to ask if Morgan could take her picture with him as well. It was then that he introduced me to Ana, his wife (the volunteer who had helped us with the frame). So I decided to have Morgan take her picture with both of them.
After all that it was time to leave for the airport. We made it through without too much trouble, just a nice pat down for both of us at security as her braces set off the alarm. Then we were headed from Philly to Denver, and then Phoenix. Denver was freezing! It was 9 degrees when we landed and 5 degrees when we finally took off over an hour delayed. We landed in Phoenix and then had to take her braces off as she was in a lot of pain. I wanted to give her a quick break and check on everything. It seemed like she was doing okay, no majoy reddness that wouldn't fade in 20 minutes so after a short break Donna and I wrestled them back on and at 12 started our drive home. Donna drove so I could climb in the back with Morgan and comfort her. Once she finally fell asleep I tried to too. I think I slept for about 40 minutes. We then arrived to Donna's house at 2 am where David and Charley were both waiting for us. David was staying there too for the night so he could help with Morgan and I could get a few hours of rest. By 2:30 I was in bed...but by 4:30 or so I was awake again. I could hear Morgan up fussing and the wind was hollowing really loud so I couldn't sleep. By 6 I got up and we decided to pull the braces off and give her a bath. She really enjoyed the bath and the break from the braces.
In all it was a great trip. We are now scheduled to go back on January 7th to check her braces and also get a back brace to help with her kyphosis. They wanted us back in two weeks (right before the holidays) and I said no, we need a break. We have not decided yet who will be taking her on this trip. We will keep you all up to date. For now there are pictures below from our trip. Enjoy.
Morgan waiting patiently to get her casts off. You can see how excited she is!
Here is a picture of Morgan's legs post casts. You can see she has a little skin break down behind the left knee.
Morgan with her new braces on. Even her knees are smiling!
Morgan playing babies with one of her new friends.
Morgan and Santa. He was a great Santa with a real beard and all.
Morgan and one of the Shriner's Clowns.
Dr. Van Bosse, Morgan, and Ana Van Bosse
Exhausted and ready to fly home!
Here is Morgan and her Uncle Brad opening just a few of the gifts he brought for her. This was her favorite; it's a Little People barn with a farmer and all the animals. As soon as she opened it she shouted "E, I, E, I, O!" Now every time she asks to play with her barn this is what she says. It is so cute!
This is one of my gifts from Donna and Charley, but Morgan wanted it for herself.
Morgan napping on the plane.
