This is the journey of Little e (or Emma). She is on oxygen, has a feeding tube, and has been diagnosed with neuroendocrine cell hyperplasia of infancy (NHI). She also has a history of failure to thrive. She has been through a lot in her life already. Nurses all say she is a rock star! Her therapists all comment on how sweet she is. Both of these, of course, couldn't be more true.
11.24.2012
Basket Raffle Fundraiser to benefit chILD Fundraiser
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5.21.2012
Hello Mini Gait Trainer... or "Go Go Gadget"
It all started with a random email to Emma's physical therapist:
04/06/2012 08:20:40 PM
I found a new Facebook page that has a couple references to medical supplies for kids and saw the following:
http://www.rifton.com/products/mobility/pacergaittrainers/
Do you think Emma will need something like the above (gait trainer) as she gets closer to walking?
Only a month later and Emma has a two week trial to try out the mini pacer gait trainer. Last week Emma's physical therapist brought one to her session, but it didn't have all the needed bells and whistles that Emma needs for trunk support. This week, she brought it back with the added attachments. She stands in the stander (which is a bright pink Leckey Squiggles), the jumper (Johnny Jumper because it has the highest maximum weight capacity of 28 and all the others have 24-25 pounds), saucer, and you can she can stand if you hold on to her sides. You can make her move her legs but you have to hold her sides and use your feet to literally move her feet.
This morning Emma was in the gait trainer and we were all so happy with her willingness to use it, and she even picked up her feet a few times. Last week when we first tried it Emma was actually getting upset because (we think) she wanted to try it out. She was getting fussy as PT was making the adjustments to get it to fit her size. In general, PT did have to literally move her feet to imitate steps. But we were all so excited that for even those few times she picked up those feet like she knew what she was doing. She was pointing at things so PT brought her over to objects to check out things. I think PT was surprised at how well she did in it. To be honest, so was I. She is usually apprehensive about new equipment, especially for the first few trials, so this was just great. I could tell PT was pleased with how well it was working for Emma, and that made me even more excited. The stander has really helped get her to this point and so I can't wait to have her use it.
Tonight Catie and I took a video of Emma in the "go go gadget". That is what we call it. PT was saying that it was to "go go" and daycare was calling it a "gadget" so it is unofficially called the "go go gadget". Catie was so cute the way she was trying to help Emma. She was taking the video while I stood behind Emma and helped her move. "You have to stand up straight, Emma" and "Pick your foot up, Emma. You have to pick your feet up to walk." she would say. It was so cute. She would even talk to her in the tone that an adult talks to a young child. She is most certainly my big helper!
Now, we must figure out where to put it amongst all her other stuff!
04/06/2012 08:20:40 PM
I found a new Facebook page that has a couple references to medical supplies for kids and saw the following:
http://www.rifton.com/products/mobility/pacergaittrainers/
Do you think Emma will need something like the above (gait trainer) as she gets closer to walking?
Only a month later and Emma has a two week trial to try out the mini pacer gait trainer. Last week Emma's physical therapist brought one to her session, but it didn't have all the needed bells and whistles that Emma needs for trunk support. This week, she brought it back with the added attachments. She stands in the stander (which is a bright pink Leckey Squiggles), the jumper (Johnny Jumper because it has the highest maximum weight capacity of 28 and all the others have 24-25 pounds), saucer, and you can she can stand if you hold on to her sides. You can make her move her legs but you have to hold her sides and use your feet to literally move her feet.
This morning Emma was in the gait trainer and we were all so happy with her willingness to use it, and she even picked up her feet a few times. Last week when we first tried it Emma was actually getting upset because (we think) she wanted to try it out. She was getting fussy as PT was making the adjustments to get it to fit her size. In general, PT did have to literally move her feet to imitate steps. But we were all so excited that for even those few times she picked up those feet like she knew what she was doing. She was pointing at things so PT brought her over to objects to check out things. I think PT was surprised at how well she did in it. To be honest, so was I. She is usually apprehensive about new equipment, especially for the first few trials, so this was just great. I could tell PT was pleased with how well it was working for Emma, and that made me even more excited. The stander has really helped get her to this point and so I can't wait to have her use it.
Tonight Catie and I took a video of Emma in the "go go gadget". That is what we call it. PT was saying that it was to "go go" and daycare was calling it a "gadget" so it is unofficially called the "go go gadget". Catie was so cute the way she was trying to help Emma. She was taking the video while I stood behind Emma and helped her move. "You have to stand up straight, Emma" and "Pick your foot up, Emma. You have to pick your feet up to walk." she would say. It was so cute. She would even talk to her in the tone that an adult talks to a young child. She is most certainly my big helper!
Now, we must figure out where to put it amongst all her other stuff!
Inchstones
I recently stumbled across a website where a mom spoke of inchstones, instead of milestones, and I have incorporated this into my way of thinking. A baby sits up, rolls over, crawls, and walks. These are the milestones they teach you about in the "what to expect with your baby" books. If your baby meets these milestones it's like putting a check mark next to the box and continuing to the next chapter. When your baby doesn't meet these milestones, it can be frustrating. You want your child to have the ability to do what all the others their age are doing. When you are chasing after your one year old in a store you wish they would just stay still. When your child is 22 months old and not mobile, you wish it were the other way around. You wish you could be that mother chasing down their child hiding in the clothes racks at the store, jumping up and down throwing a tantrum. Not because you want your child to be that out of control child, but simply because they can do it. They can, and yours can't. When progress is slow you have to think about milestones in a new way.
One recent inchstone we experienced with Emma is sitting in the front of a shopping cart. I know, this sounds so simple and so uneventful. Why would any mother be excited that their child can sit in a shopping cart. Emma could not sit in the front of a shopping cart until about a month ago (~21 months old). Prior to this, we had to use an infant car seat. She was too big for an infant car seat for travel, but we had to carry around an extra car seat (infant size so that it could fit in the front of the cart), transfer Emma from her car seat into the infant seat in the front of the shopping cart. If you set her in the shopping cart without this she wasn't strong enough to sit up with just the shopping cart buckle. One day I decided it was the day to try her without the infant car seat. That's right, try to sit her in a shopping cart solo. It really wasn't a matter of deliberation over whether she was ready or not. It was more simple, I didn't have the extra seat with me! So, I tried it. I buckled her in and wrapped my jacket around her to prop her up so she wouldn't slump down. It worked! By the time we got to the cashier I found myself needing to reprop the jacket around her for support. We still have to put a jacket around her or else she will slump to the side, but I'm confident some day we will be able to remove the extra cushion. I don't know when that day will be. I can't look that up in a book of milestones because it's not there. It will be another inchstone that she'll surprise me with someday.
Thinking about milestones is hard, but thinking about inchstones gives shorter interval goals that gives you a sense of growth and development too. With Catie I would have never even given second thought about putting a 22 month old in a shopping cart. I was that mother that was chasing their child out of the clothing racks. She wasn't the out of control child, but she did meet all her milestones and I checked off the boxes without even thinking about them. Now, I don't know when I will check off the boxes and move to the next chapter. But that's okay. Sometimes it doesn't feel okay, but most of the time it is okay. When she surprises me by meeting an inchstone that you don't even anticipate, that makes it okay.
One recent inchstone we experienced with Emma is sitting in the front of a shopping cart. I know, this sounds so simple and so uneventful. Why would any mother be excited that their child can sit in a shopping cart. Emma could not sit in the front of a shopping cart until about a month ago (~21 months old). Prior to this, we had to use an infant car seat. She was too big for an infant car seat for travel, but we had to carry around an extra car seat (infant size so that it could fit in the front of the cart), transfer Emma from her car seat into the infant seat in the front of the shopping cart. If you set her in the shopping cart without this she wasn't strong enough to sit up with just the shopping cart buckle. One day I decided it was the day to try her without the infant car seat. That's right, try to sit her in a shopping cart solo. It really wasn't a matter of deliberation over whether she was ready or not. It was more simple, I didn't have the extra seat with me! So, I tried it. I buckled her in and wrapped my jacket around her to prop her up so she wouldn't slump down. It worked! By the time we got to the cashier I found myself needing to reprop the jacket around her for support. We still have to put a jacket around her or else she will slump to the side, but I'm confident some day we will be able to remove the extra cushion. I don't know when that day will be. I can't look that up in a book of milestones because it's not there. It will be another inchstone that she'll surprise me with someday.
Thinking about milestones is hard, but thinking about inchstones gives shorter interval goals that gives you a sense of growth and development too. With Catie I would have never even given second thought about putting a 22 month old in a shopping cart. I was that mother that was chasing their child out of the clothing racks. She wasn't the out of control child, but she did meet all her milestones and I checked off the boxes without even thinking about them. Now, I don't know when I will check off the boxes and move to the next chapter. But that's okay. Sometimes it doesn't feel okay, but most of the time it is okay. When she surprises me by meeting an inchstone that you don't even anticipate, that makes it okay.
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