Yesterday an equipment representative came to our house with Raymond's physical therapist. She was here to show us several options for strollers and other equipment. We ordered a stroller, car seat, gait trainer and bath seat. Raymond is on his second car seat and he has outgrown it. The straps are not high enough to go up over his shoulders (that's also what happened with the first one). This car seat is rather large but it will be able to hold him until he's 105lbs. It can be rear facing or forward facing. It's made by Britax which is the company that made Isabella's car seat. I will miss not being able to just snap Raymond in and out of the car but I remember feeling the same way when Isabella transitioned in her seat. Here's what it will look like, except blue.
The stroller is another item that I am excited about. Currently, the stroller Raymond uses doesn't give him enough support. He slumps down or slumps to the side in it. This stroller will not allow him to do that. We also ordered a detachable IV pole to hang Raymond's feeding bag on which will be SO handy. I was a little worried that the stroller would look very "medical" but it actually looks like a pretty normal stroller.
The bath seat will help me give Raymond a bath without the poor little guy sliding all over the place. So what is a gait trainer? A gait trainer is a piece of equipment that will help Raymond strengthen his core and stimulate walking. It's not that we are in a rush to get him walking before he can crawl but this will encourage him to support and balance himself and force him to use mussels that he normally avoids using. For Isabella's first birthday, Chris' cousin Julie and her husband Scott, bought Isabella a ride-on Little Mermaid toy. Raymond really enjoys sitting on it (assisted) and trying to make it move. This is one of the big reasons we thought he would enjoy the gait trainer. The big difference is that he will be able to sit in the gait trainer without assistance from Chris or me. Then he can push and try to make it roll by himself. It's the second picture below.
During the appointment Sadie was very cautious. She doesn't like when people she doesn't know pick Raymond up and move him around. She didn't growl at the lady but she stayed right next to Raymond the entire time just in case I looked worried. Then she would be right there to take care of the situation! : ) As the sales representative was leaving she commented that we have a very well behaved dog. She's our good girl!
Raymond's seizures have improved. They haven't stopped completely by I definitely see improvement. Raymond has been very spunky this past weekend and so far this week. The neurologist called me Monday evening and we talked about the encouraging progress. He decided to increase Raymond's medicine slightly to see if that helps the seizures to stop all together. That's his ultimate goal with the Keppra. We see the neurologist on Dec. 17 but he said he will be in touch once a week until then to check on Raymond's progress.
Back in October, I shared with you a documentary that was going to air on television called Brave in the Attempt. Chris and I DVRed it and watched it Sunday. We have seen several documentaries on people and families effected by Down Syndrome. Brave in the Attempt isn't only about people with Down Syndrome but many of the people on the teams have DS, ranging in severity. My gripe with most of the DS documentaries is the same. They always pick someone with the most severe case of DS who isn't very functional. That or either the family of the person isn't supportive or very knowledgeable. Chris and I kept saying to each other how these are such bad representations of DS. If I was an "outsider" it wouldn't give me a good picture of what to expect from an individual with DS. I've said to Chris we should make a documentary involving children we know with DS. The ones who hold a job and go to college. So anyway, we watched Brave in the Attempt. I really thought that this was a good representation of DS and other disabilities. The young men and women on the team have all different levels of special needs. It showed the gamut. One featured women with DS works at a charter type school as the PE teacher. She has been there for 15 years and the children and families love her. Another young man works at the library. Two other featured men, neither of whom had DS, worked together and have been at their jobs for 16 and 24 years. Some of the other team members are not functional enough to hold jobs. It was such a heart warming film. One that I think everyone, whether you have a special needs child or not, should see. A father of a boy with DS said something in the film that really stuck out to me. He said that probably the hardest thing for him having a special needs child has been letting him fail. I think I will also battle with this. I know it's healthy for all children to fail at things, but with Raymond especially, I don't want to see him struggle as he gets older. I KNOW that will happen but the over protective side of me never wants that for him. He's going to have enough other stuff to deal with. I'll just cross that bridge when it comes like I do everything else. One step at a time!
"Let me win. But if I cannot win, let me brave in the attempt."
-Special Olympics Athlete Oath
Isabella and I made a big batch of cinnamon rolls and froze them. We now have 5 pans of them on the freezer downstairs. It's so nice to have a large standing freezer. I haven't made cinnamon rolls for about 4 or 5 months but that's about how long these will last too. Now, everyday, Isabella asks me to bake cinnamon rolls. As a pregnant woman, this is a very hard thing to refuse. Some days she makes a very good case for herself. But I tell her that they are for on the weekends when Daddy is home. It's nice to be able to pop them into the oven and make a batch of maple frosting for an easy weekend breakfast. Monday night for dinner I made my favorite soup. I was in the kitchen running chicken through the meat grinder when Isabella came into the kitchen. She asked me if the chicken was for meatballs that go into the soup. When I told her yes, she started screaming and jumping up and down in excitement. I must say, it makes you feel pretty good when someone screams with excitement over something your cooking. Now I know how Bobby Flay must feel! : )
Speaking of Isabella, the other day she was playing in her bedroom and I stuck my head in to see if she was okay. I found her pulling her pom-pom apart and putting the strings in her baby's bed. When I asked Isabella why she was doing that she told me she needed hay. Hay? Why are you putting hay on your baby doll's bed? She told me her baby needed to lay on hay like baby Jesus did. It was sweet. I told her next time she needed hay to tell me and I would run some construction paper through the paper shredder so she wouldn't have to pull her pom-pom's apart. It's true that you never know what kids are going to come up with. Lately she's also been cutting paper and making coupons. She told me she has coupons for everything just like I do. It made me chuckle. I do like coupons!
Today Raymond did something fantastic! He was on his belly and propped himself up on his side. Then he pushed up on his arm and sat himself right up! I was so surprised. He sat up unassisted, without using his hands and looked around for about 15 seconds. I watched but tried not to be a distraction while I was having my proud mom moment. When he laid himself back down I praised him and told him he did a good job sitting up. Then I thought, I hope he doesn't think I'm praising him for laying back down. Hopefully he'll keep trying this and I will have seen it already and can make a fuss while he's up and not send the poor kid mixed signals. Good job buddy!!! You are so smart!!!
The day after Thanksgiving Isabella has been invited to the twins birthday party. She is very excited! Cathrine and Elizabeth are actually switching classes so Isabella won't see them at school anymore. I haven't told her yet because I thought her teachers might talk to all the children about it. If not then I will tell her. She's going to be sad because they are her special friends. Hopefully we will be able to continue to see them for play dates. Speaking of the day after Thanksgiving, can you believe the times all the stores are opening? Walmart is opening at midnight and Bon-ton is opening at 3am. But the kicker is that Toys R Us is opening at 10pm on Thanksgiving Day and staying open through Friday! That is crazy! For the record, I will not be at any of those stores.
Chris and I have been continuing to work on our bathroom. It's getting done slowly but surely. We had a set back this weekend but luckily it's something that can easily be fixed with a trip to Lowes or Home Depot. I think while Isabella is at school Raymond and I will go and pick up what we need. Whenever we do get it done I will post a few pictures. Before and after.
Here is a picture of Raymond when he was in the hospital. You can see what the nurses had to do to his face to keep the oxygen on. Also take notice to the top left corner of the picture. Meet Bernard. Isabella got him in a set with two other dolls and Raymond liked him so much she let Raymond have him. Raymond will grab a hold of Bernard and babble away. Chris thinks he likes him so much because of his large facial features. I agree. It's funny to watch Raymond "talk" to Bernard. I can only wonder what he is trying to say.
Until Next Time!
Lots of Love,
Erica
It was extremely hard to get a good picture of Raymond and Isabella together in their costumes. They were both very wiggly. Isabella was wiggly to go get candy and Raymond was wiggly to rip the lobster antenna off his head! Later that night, the princess, the lobster and I went over to Aunt Theresa and Uncle Roy's house for a trick-or-treat surprise. Isabella wanted to ring their front door and say "Surprise! Trick-or-Treat!" and she did. We walked around in their development a little getting a few goodies.
