Maddi has been doing well and is growing like crazy. We have added more pieces of therapy and mobility equipment to the mix over the past year. She now spends a bit of time everyday in a brace called an HKAFO (Hip, Knee, Ankle, Foot Orthotic). I will save explaining what it looks like and post a picture instead:
She still spends time in her standing frame/parapodium:
She uses a wheelchair:
She has a little cart that she uses on outings with the day care:
She still has her afo's and now has some wraps/splints that go on her leg and keep her knees straight. In this pic she is using them with a set of parallel bars on loan from the Spina Bifida Association of Saskatoon which we are members of:
Maddi is one busy girl between getting in and out all this equipment, and doing all the other things two year olds do! Maddi still attends the Natural Wonders Early Learning Centre Monday to Friday and she loves it. We are so thankful for Steph, her one-on-one caregiver there. Maddi absolutely loves her and we are so grateful for the wonderful care she gives Maddi. Steph attends Maddi's physio appointments with us and has been learning how to use all her equipment so that she can do therapy sessions with Maddi two-three times per day. The daycare has been very accommodating and we are so thankful for that. However, we are looking forward to fall 2014 when Natural Wonders will be opening a new daycare in the brand new school. Besides being a new beautiful space, it is going to be completely wheelchair accessible! The current centre is not wheelchair accessible which does cause some issues, so we are counting down the days until the new centre will open!
While Madison has made a lot of progress lately, she still has a lot of work to do. Mobility-wise, crawling is still her preferred method of getting around the house or the daycare. Outside she uses her wheelchair, or her hand & foot powered bike:
She is getting better at climbing up and down stairs independently, she climbs in and out of her mini club chair, and we frequently catch her pulling herself to stand, which sounds like a great thing, but she does it without braces on so she ends up "standing" on the top of her foot. Not so great! We have struggled over the past year and a half to find AFO's that stay on her feet while she is crawling. With the help of one of Maddi's physiotherapists, Michelle, we have found a couple of different styles available to order from the USA that we are hoping to try.
We also have a couple of other pieces of equipment in mind that we have been talking to Maddi's therapists about. One is a dynamic stander called the Rabbit that is basically a parapodium with big wheelchair wheels that she could use to move herself around. The benefit of this would be that she would be more motivated to stay standing for longer as she would be able to move around easily. In the parapodium she is totally stationary and therefore gets bored quickly. Right now, the longer Maddi stays in a standing position, the better it is for her body. Especially now when she is so young and growing so quickly. The second piece of equipment we have been looking at is a walker called the Rifton Pacer which offers some support for her. Unlike the basic walker she uses now, this one would have a pelvic support/sling that would support her weight if she needed to take a break or would catch her if she lost her balance. The discussion we have been having with Maddi's therapists is that this piece of equipment would help her build confidence with her walking and hopefully encourage her to walk more. We have been having trouble lately convincing her to walk with her HKAFO and walker as it seems that she is unsure of herself and her balance when she is using them. It is our hope that she would feel more stability in the pacer and giving her more motivation to walk. Unfortunately neither of these pieces of equipment are covered through the provincial program so we would be paying thousands out of pocket. We are hoping to get an opportunity for Maddi to at least try them out and then we will decide what to do.
Aside from orthopedic issues, the biggest thing we deal with is maddi's bowels and bladder. Late 2012 she started developing UTI after UTI and so this spring it was time to start catheterizing her on a regular basis as the infections were caused by her bladder's inability to empty. She is now "cathed" 4 times per day and this has really helped cut down on the infections. Steph at the daycare caths her twice a day so we are very grateful that she was willing to take this on! Otherwise greg or I would be running to the daycare twice a day to cath her. Thankfully she still does not have any reflux from her bladder to her kidneys which is a major concern for people with Spina Bifida.
As far as bowels go, let me first explain that it is the nerves at the very end of the Spinal Cord that control bowel and bladder function. Because the very end of Maddi's spinal cord did not develop properly, her bowels and bladder do not function properly. For this reason we are going to need to begin a bowel care program which will keep her clean. Because people with Spina Bifida often do not have bowel control, they are prone to constipation and need help to clear out their bowels. For now she takes a daily dose of "Relaxa" which is a laxative. Eventually we are going to need to start a program of daily enemas which will keep her clean. Unfortunately this is the one area where we really don't have a medical specialist to help us out. This is really unfortunate because it really is a big, ongoing issue that we could really use some help with. We have heard from many parents that the Colorectal Clinic at the Cincinnati Children's Hospital is the place to go. You go for a week and by the end of it you leave with a specific bowel care program that will work for your child. They take an x-ray of your child's bowels everyday so that they know for sure things are working properly. We are exploring this as an option but are hopeful to find someone closer that would help us achieve the same result.
I am sure there is something I missed but this should bring you up to speed on how Maddi is doing. Hopefully I can get into the swing of doing shorter more frequent updates so that I can avoid these long posts!
Next post I promise to introduce everyone to the newest addition to our family and let you know what she is up to!
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