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.
Tuesday, September 2, 2008
Thursday, August 28, 2008
A Very Good Time...
Annabel is at a very good place right now. She is healthy and happy. On Sunday Annabel was able to go to church with her Loma and Lanny. Then she went home and spent some time with them for a few more hours. I call their home her peaceful retreat. She gets so much love when she is with them. It had been quite a while since she visited at their home due to the tube feedings and the need to be cathed.
Their church has been with Annabel since she was born, have offered so many prayers on her behalf. She is truly family in this church. It had been quite a while since she visited at their home due to the tube feedings and the need to be cathed.
Our transition back to school couldn't have been better. I am always looking for signs of stress in new situations. I can honestly say that since she began on Monday I haven't seen any sign at all. Now, I do believe Annabel adjust well most of the time, but everyday and all day classes is quite a bit. So much of the credit goes to Annabel's school. I was told last year that if I could get her a spot at this school and with this teacher, that I had better take it. God knew right where Annabel needed to be and placed her there. I love her teacher, Mrs. Anne and her two aides, Ms. Lisa and Ms. Alice. The principal and the vice principal are amazing! From what I hear, they both take their precious time to go in and spend time with her. I have heard this from many people not working at the school. Also I understand several of the parents who children attend this school (not in her class) visit her in her class room. I find myself thinking how can I possibly thank all of these people for the time, love and attention given to Annabel. Maybe a front page ad in our local paper???? Having never had a little one in the public school system or in a special class, I had concerns that maybe Annabel would just be placed in a chair or laid on the floor and not get that much attention. After all, Annabel can't tell me herself anything, right? I can honestly say I do not have one single reservation about her being in school five days a week all day. (Last year we were very inconsistant due to illness and therapy) I would love her to go all five days all day because I see so much happiness when I stop by the class to check on her or when she get out of school.
Something very big happened today at school! I said no more about potty issues, but today was the first time that she did her business at school for the teacher. Yippee! She has continued to potty upon waking, returning home from school and prior to bedtimes. The potty chair is different at school and her feet do not touch the floor. I believe she just wasn't totally comfortable whereas hers at home she is very secure sitting on. I really cannot remember the last time at home that she has had any accidents during her waking periods. She sometimes still has a wet diaper during the night. The most awesome part is that I am hardly cathing her anymore. When she first began to potty I would follow up with cathing. I was not sure how much she was getting out, but day by day she has had less and less. Two good things
have come from this, first is that since she makes poopy on the potty it doesn't seem to travel back up and get bacteria in places that they are not suppose to be, so therefore we are at this time not doing the antibiotic insertions into her bladder. This is really too much info for family and friends, but in the case of a parent with a special child who maybe going through the cathing, it is good news.
With the addition of going back to school Annabel has a new PT. Her name is Meg and we are so lucky she is right here in the town we live in. Like only 5 minutes from our home. She is new to the area, and we are so lucky to have found out about her. (on a sidenote, our precious Hailey had a new baby and will be taking much time off)
She does more intensive type therapy and although Annabel is not ready for that she is trying Annabel at three days a week, 1 hour at a time. Good news is that she made all three days and lasted the full hour even after all day school. Also, she is remembering what she learned the session before and readily repeats it or catches on very quickly.
Ok, I am sure I sound like I am high on something or that this is a high point in my manic stage. I promise I am not, I am just so overly grateful to God! He has shown us way more blessings and miracles than we could have ever expected. First, he has placed Annabel with us and I cannot even begin to deserve this! Second, he has given Annabel this most amazing spirit to fight, learn, and be joyous beyond belief. Thirdly, he has placed so many people like her teachers, therapist, doctors, nurses, etc. Fourth, he has brought so many people into my our lives that I am sure we would otherwise not known. These people are local and through her blog, all over the world. I think you can see why I am feeling beyond BLESSED!
Through all of this thankfulness, I do not want to forget others families this week that have lost their little ones. To mention just a couple, Christian and Nolan. If we could please keep them in our prayers as their arms are aching with emptiness. Also, for Magdalena who is doing well, but suffering some spells with apnea. Most of these she brings herself out of, but some are very frightening.
Their church has been with Annabel since she was born, have offered so many prayers on her behalf. She is truly family in this church. It had been quite a while since she visited at their home due to the tube feedings and the need to be cathed.
Our transition back to school couldn't have been better. I am always looking for signs of stress in new situations. I can honestly say that since she began on Monday I haven't seen any sign at all. Now, I do believe Annabel adjust well most of the time, but everyday and all day classes is quite a bit. So much of the credit goes to Annabel's school. I was told last year that if I could get her a spot at this school and with this teacher, that I had better take it. God knew right where Annabel needed to be and placed her there. I love her teacher, Mrs. Anne and her two aides, Ms. Lisa and Ms. Alice. The principal and the vice principal are amazing! From what I hear, they both take their precious time to go in and spend time with her. I have heard this from many people not working at the school. Also I understand several of the parents who children attend this school (not in her class) visit her in her class room. I find myself thinking how can I possibly thank all of these people for the time, love and attention given to Annabel. Maybe a front page ad in our local paper???? Having never had a little one in the public school system or in a special class, I had concerns that maybe Annabel would just be placed in a chair or laid on the floor and not get that much attention. After all, Annabel can't tell me herself anything, right? I can honestly say I do not have one single reservation about her being in school five days a week all day. (Last year we were very inconsistant due to illness and therapy) I would love her to go all five days all day because I see so much happiness when I stop by the class to check on her or when she get out of school.
Something very big happened today at school! I said no more about potty issues, but today was the first time that she did her business at school for the teacher. Yippee! She has continued to potty upon waking, returning home from school and prior to bedtimes. The potty chair is different at school and her feet do not touch the floor. I believe she just wasn't totally comfortable whereas hers at home she is very secure sitting on. I really cannot remember the last time at home that she has had any accidents during her waking periods. She sometimes still has a wet diaper during the night. The most awesome part is that I am hardly cathing her anymore. When she first began to potty I would follow up with cathing. I was not sure how much she was getting out, but day by day she has had less and less. Two good things
have come from this, first is that since she makes poopy on the potty it doesn't seem to travel back up and get bacteria in places that they are not suppose to be, so therefore we are at this time not doing the antibiotic insertions into her bladder. This is really too much info for family and friends, but in the case of a parent with a special child who maybe going through the cathing, it is good news.
With the addition of going back to school Annabel has a new PT. Her name is Meg and we are so lucky she is right here in the town we live in. Like only 5 minutes from our home. She is new to the area, and we are so lucky to have found out about her. (on a sidenote, our precious Hailey had a new baby and will be taking much time off)
She does more intensive type therapy and although Annabel is not ready for that she is trying Annabel at three days a week, 1 hour at a time. Good news is that she made all three days and lasted the full hour even after all day school. Also, she is remembering what she learned the session before and readily repeats it or catches on very quickly.
Ok, I am sure I sound like I am high on something or that this is a high point in my manic stage. I promise I am not, I am just so overly grateful to God! He has shown us way more blessings and miracles than we could have ever expected. First, he has placed Annabel with us and I cannot even begin to deserve this! Second, he has given Annabel this most amazing spirit to fight, learn, and be joyous beyond belief. Thirdly, he has placed so many people like her teachers, therapist, doctors, nurses, etc. Fourth, he has brought so many people into my our lives that I am sure we would otherwise not known. These people are local and through her blog, all over the world. I think you can see why I am feeling beyond BLESSED!
Through all of this thankfulness, I do not want to forget others families this week that have lost their little ones. To mention just a couple, Christian and Nolan. If we could please keep them in our prayers as their arms are aching with emptiness. Also, for Magdalena who is doing well, but suffering some spells with apnea. Most of these she brings herself out of, but some are very frightening.
Thursday, August 21, 2008
Potty Update....
I promise after this post, there will be NO MORE about potty issues. Annabel has continued to have success with her potty time. Within about a minute of placing her on her potty she begins to have success. She now claps for herself and is so proud. Maybe we overdue things just a bit around here, but little steps are a huge accomplishment!! I am sure we will have bumps in the road as with any child, but at this point with Annabel being non-verbal and non-ambulatory, I will just need to be diligent about getting her there. Just added a few more pics (these with clothes) of her on her new pink (of course) potty.
It's amazing how they say a child with T18 has a minimal chance of doing "normal" activities, but here she is going strong at her own pace. It makes me step back and think to never say never when life has so many possibilities no matter what the diagnosis or disorder. God has put each one of us on earth for a reason so there is nothing wrong with enjoying the little things that each day brings. Hope that my sharing about Annabel's achievements helps everyone else through their struggles.
Subscribe to:
Posts (Atom)