The life story of Annabel Grace Shelander... living with Trisomy 18, the struggles along the way, and the triumphs that she continues to have.
Thursday, September 4, 2008
A surprise visit...
Tonight, we had a surprise visitor come through. As I had mentioned in an earlier post, Tyler was on Hurrican duty with the National Guard. As they were passing back through Beaumont he was able to visit briefly while the rest of the unit went to have dinner. I think by the pictures, he was obviously missed by Miss Annabel! He isn't sure if he will be coming right back or if he will have to go to where the next storm will be. I am wondering how I will handle it when Tyler goes off in 2010 for duty, if I can't handle him being on storm duty.
As you can tell we were not planning on a photo shoot, she was just chillin' in her t-shirt and diaper!
Wednesday, September 3, 2008
Our little fish... or frog????
Annabel has like the water since she was born. She would instantly become relaxed and at times kick her feet. But never before has she used her hand and feet at the same time. When we evacuated this weekend and visiting my brother, Tara decided to take her for a swim. She was so animated and was kicking all over the pool.
Tuesday, September 2, 2008
Annabel's Equipment
I will attempt to explain Annabel's equipment, at least what I know of it and my opinions about it. The Omron Nebulizer is the best! The overall case is 7" x 3". The nebulizer itself is 5 1/4" tall, by 2" x 1 1/4". It doesn't make a sound but has plenty of power with a great mist. You could even do it in church if need be. It fits so easy in the diaper bag and take two AA batteries. It does come with a recharger but have just never used it. The reason I love this is that my first one was too big, too loud and wasn't portable. It is small enough that she attempt to hold it with her tiny hands. I actually think the noise on the older one scared her.
As far as the bath chair, not really sure what the brand is, but I have seen it in many catalogs. In Annabel's bath, I had a farmhouse sink installed and it is a perfect fit. She will outgrow this probably in the next year and I will use the bath chair more.
The Infinity Pump is wonderful. The only experience I had was with the Kangaroo pump and that was in the hospital. I owe it to my friend Connie who recommended this Infinity pump. We are on the go all the time and it is very easy. The problem I have is not with the pump but with her Bard button. I think most everyone else has a Mickey button (probably spelled wrong) and it has a locking device so the tubing just doesn't pull out. Annabel's just pulls out or if she wiggles too much it comes out and then we have pediasure everywhere. So we are just careful.
Her stander is by Prime Engineering and is called the Superstand. I am ok with this but have seen others since we received Annabel's and I would just say shop before you buy. I was only offered one to try and didn't have time to research. Also, that was pre-blogging days, now I know there are many more options. Overall, it works for Annabel and she is very happy in her stander. She doesn't have one yet at school and I am hoping that she will get one in her classroom. There are ones for the other children but their are larger.
The purple chair is called the Special Tomato Chair. There are several pieces to this unit. From what I understand it can become a highchair, carseat, floor sitter and then as pictured. I only use it as pictured. I think Tumbleform makes something similar, but it didn't fit Annabel as well overall. I would advise if purchasing one to definitely get the base with the wheels and also the tray. It moves easily from room to room and Annabel is most happy when around the family.
Her wheelchair is called a Ti Lite Model YG (Youth Growable). I have mixed emotions about this chair. Her therapist felt she need the large wheel because it gave her the ability to self-propel. I like the convenience of the tilt-in-space in case she needs to tilt back to rest. I had to choose one or the other and I opted for the self-propel. Her wheelchair comes with a tray. That does not mean in any way that I don't want her to walk. We are working very hard toward this goal and I truly believe it is possible with Annabel. It just helped my back to have this chair available. We do use it to enter and exit the school building but they do not put her in the chair at all during the day. It doesn't enter her classroom and I am grateful for that.
The Bruno Wheelchair Lift was a must for me. The chair was very hard to lift. The chair is probably around 35-40lbs. but several times a day it becomes very heavy.
The OttoBock stroller was what Annabel had early on. I do not remember at what point she received this piece of equipment. Before this when she was newborn we used a Graco stroller with her infant carrier. It was easy and compact and easy to load. When Annabel began to try to sit up more is when we ordered the OttoBock stroller. It enabled her to lean back or sit up and everywhere in between. It had her lateral support and foot plate. She also needed the head piece for lack of head control. We still use it at times to walk around the neighborhood. It has a cover for shade, whereas her wheelchair does not. This also came with a tray.
I have thought several time of how nice it would be to have a store that we could go to and try all the different types of equipment. It is so expensive and we are very limited to being able to demo the equipment.
As far as the bath chair, not really sure what the brand is, but I have seen it in many catalogs. In Annabel's bath, I had a farmhouse sink installed and it is a perfect fit. She will outgrow this probably in the next year and I will use the bath chair more.
The Infinity Pump is wonderful. The only experience I had was with the Kangaroo pump and that was in the hospital. I owe it to my friend Connie who recommended this Infinity pump. We are on the go all the time and it is very easy. The problem I have is not with the pump but with her Bard button. I think most everyone else has a Mickey button (probably spelled wrong) and it has a locking device so the tubing just doesn't pull out. Annabel's just pulls out or if she wiggles too much it comes out and then we have pediasure everywhere. So we are just careful.
Her stander is by Prime Engineering and is called the Superstand. I am ok with this but have seen others since we received Annabel's and I would just say shop before you buy. I was only offered one to try and didn't have time to research. Also, that was pre-blogging days, now I know there are many more options. Overall, it works for Annabel and she is very happy in her stander. She doesn't have one yet at school and I am hoping that she will get one in her classroom. There are ones for the other children but their are larger.
The purple chair is called the Special Tomato Chair. There are several pieces to this unit. From what I understand it can become a highchair, carseat, floor sitter and then as pictured. I only use it as pictured. I think Tumbleform makes something similar, but it didn't fit Annabel as well overall. I would advise if purchasing one to definitely get the base with the wheels and also the tray. It moves easily from room to room and Annabel is most happy when around the family.
Her wheelchair is called a Ti Lite Model YG (Youth Growable). I have mixed emotions about this chair. Her therapist felt she need the large wheel because it gave her the ability to self-propel. I like the convenience of the tilt-in-space in case she needs to tilt back to rest. I had to choose one or the other and I opted for the self-propel. Her wheelchair comes with a tray. That does not mean in any way that I don't want her to walk. We are working very hard toward this goal and I truly believe it is possible with Annabel. It just helped my back to have this chair available. We do use it to enter and exit the school building but they do not put her in the chair at all during the day. It doesn't enter her classroom and I am grateful for that.
The Bruno Wheelchair Lift was a must for me. The chair was very hard to lift. The chair is probably around 35-40lbs. but several times a day it becomes very heavy.
The OttoBock stroller was what Annabel had early on. I do not remember at what point she received this piece of equipment. Before this when she was newborn we used a Graco stroller with her infant carrier. It was easy and compact and easy to load. When Annabel began to try to sit up more is when we ordered the OttoBock stroller. It enabled her to lean back or sit up and everywhere in between. It had her lateral support and foot plate. She also needed the head piece for lack of head control. We still use it at times to walk around the neighborhood. It has a cover for shade, whereas her wheelchair does not. This also came with a tray.
I have thought several time of how nice it would be to have a store that we could go to and try all the different types of equipment. It is so expensive and we are very limited to being able to demo the equipment.
Labels:
bathchair,
feeding pump,
nebulizer,
ottobock stroller,
wheelchair,
wheelchair lift
Subscribe to:
Posts (Atom)