Things have been moving along wonderfully with Caleigh's continuous feeds. Right now she is at 34ml an hour/24 hrs a day. I estimate that she will be at full feeds in the next 4-5 weeks if all goes well. I've got a call into our GI doc about reducing Caleigh's TPN again. She's gained another half a pound this week. 30.6 lbs. We are very close to getting off of TPN. Very close.
I felt like the worst parent in the world this week when Caleigh started having coffee ground type of stools again. Meaning blood in her stool. Eric and I couldn't figure it out. We were close to taking her in to the doc when we discovered the culprit. About 2 weeks ago I ordered Caleigh's probiotics because we were running low. When it didn't come in I contacted the company and they told me it was back ordered. No problem, I thought. I told Eric to run down to Walgreens and pick up some Culturel. This was the first probiotic that Caleigh ever took and it worked for a long time. After 3-4 days on the Culturel, blood in her stool and not sleeping well; we decided to skip a night of Culturel to see if it made a difference in Caleigh's sleep. Caleigh fell asleep quickly, I sat on the couch and Eric and I started going through the what ifs and whys and then it hit me like a ton of bricks. I jumped up, ran to Caleigh's fridge and pulled out the box. In bold black with asterisks it read "this product contains milk proteins." Ugh. Worst mom of the year award....right here. I didn't even think about it, my goodness. We didn't give her anymore obviously. A terrible part of the whole ordeal is that Caleigh had been telling us on her iPad that she felt sad. I thought it was her new favorite saying. Turns out she didn't feel good. Caleigh's stool is back to normal and she's sleeping through the night again. She hasn't told us that she is sad anymore either. Just a reminder that I need to pay attention to ALL labels no matter what we are using them for.
Speaking of the iPad, Caleigh is doing amazing things with it. She's excited to use it. She is getting her point across. The best purchase EVER. I made a keyguard out of glue sticks (still waiting on that plastics patent) and it has helped a lot. I don't have to hold Caleigh's elbow anymore. I had moved the choices to 8 squares back before the 3 inch growth spurt. She was doing great with the smaller squares. Caleigh's dystonia was a little out of control so I went back to the 4 larger squares to avoid frustration and she's doing well with it. Caleigh has also figured out that if she accidentally chooses something that she didn't want, she can hit the home button to return to the main choices. I didn't teach her that, but I guess she picked up on me doing it for her.
This video is of the iPad with 8 squares. This was right before I switched back to the 4 squares. She makes a choice that she didn't want and then chooses the home button to start over. Caleigh has been asking for a drink a lot more. Maybe a drink on her terms is much better than a drink on mommy's terms? Caleigh's verbalizations have really picked up since she started using the pad. You can hear her try to say drink before she chooses it.
I felt like the worst parent in the world this week when Caleigh started having coffee ground type of stools again. Meaning blood in her stool. Eric and I couldn't figure it out. We were close to taking her in to the doc when we discovered the culprit. About 2 weeks ago I ordered Caleigh's probiotics because we were running low. When it didn't come in I contacted the company and they told me it was back ordered. No problem, I thought. I told Eric to run down to Walgreens and pick up some Culturel. This was the first probiotic that Caleigh ever took and it worked for a long time. After 3-4 days on the Culturel, blood in her stool and not sleeping well; we decided to skip a night of Culturel to see if it made a difference in Caleigh's sleep. Caleigh fell asleep quickly, I sat on the couch and Eric and I started going through the what ifs and whys and then it hit me like a ton of bricks. I jumped up, ran to Caleigh's fridge and pulled out the box. In bold black with asterisks it read "this product contains milk proteins." Ugh. Worst mom of the year award....right here. I didn't even think about it, my goodness. We didn't give her anymore obviously. A terrible part of the whole ordeal is that Caleigh had been telling us on her iPad that she felt sad. I thought it was her new favorite saying. Turns out she didn't feel good. Caleigh's stool is back to normal and she's sleeping through the night again. She hasn't told us that she is sad anymore either. Just a reminder that I need to pay attention to ALL labels no matter what we are using them for.
Speaking of the iPad, Caleigh is doing amazing things with it. She's excited to use it. She is getting her point across. The best purchase EVER. I made a keyguard out of glue sticks (still waiting on that plastics patent) and it has helped a lot. I don't have to hold Caleigh's elbow anymore. I had moved the choices to 8 squares back before the 3 inch growth spurt. She was doing great with the smaller squares. Caleigh's dystonia was a little out of control so I went back to the 4 larger squares to avoid frustration and she's doing well with it. Caleigh has also figured out that if she accidentally chooses something that she didn't want, she can hit the home button to return to the main choices. I didn't teach her that, but I guess she picked up on me doing it for her.
This video is of the iPad with 8 squares. This was right before I switched back to the 4 squares. She makes a choice that she didn't want and then chooses the home button to start over. Caleigh has been asking for a drink a lot more. Maybe a drink on her terms is much better than a drink on mommy's terms? Caleigh's verbalizations have really picked up since she started using the pad. You can hear her try to say drink before she chooses it.
13 comments:
Love what you did with the iPad!
Holly!!!! You're awesome with the iPad. I need your help! We got Wade's in the mail the week before last, and I haven't had too much time to play with it with the end of the school year. Is there a way to keep the page from scrolling though? Wade will go for a choice and the page will scroll under him. If you have time in the near future, I'd love to meet up so you can show me how this works so well for Caleigh.
That video is so cool! Way to go Caleigh! I am so impressed!
Serial WOWs!
(Forgive yourself for the label error.)
I am so impressed!
On both of my flights out west 2 weeks ago I saw people using iPads - one a man in the seat next to me. He was an IT guy married to a speech therapist. Sure glad I struck up a conversation with him. He had a cover that folded into a triangle on the back and held the iPad at easel-angle on the tray.
You are on the leading edge of using the iPad for communication, Holly, and your posts will help many other parents.
Getting off TPN will be a great thing for your family! Warning, I may begin leaving comments asking when you are going for the power chair after the TPN hurdle. (Oh, I just did!) ;)
Barbara (I.am.so.forward.)
Barbara, I've got my eye on a metalish cover coming out at the end of the month that will do multiple angles and seems a little more sturdy. We do have an photo easel that we use but Caleigh can knock it over easily.
Funny you should mention the power chair....we'll be starting the process next week.
Fabulous!
This is so awesome! I never thought about the iPad being able to do this! What a wonderful thing for Caleigh!
wow! she is doing so well with the ipad! maybe I'll get my son one too. Caleigh is soooo impressive on it. and I must say the voice the ipad has is kind of cute.
I love the divider you made for Caleigh's iPad. I am a speech-language pathologist (well will be when I graduate in a month) and had wondered if there was anything like that available. I love that you figured out this adaptation on your own.
Holly - thanks. My daughter is 3 and 1/2, has been ready (in my view) for a communication device for over a year, and there's been endless of foot dragging from the district here. Thanks to you in part, I'm getting her an iPad next week. We'll try it out over the summer. Then we can argue for a device purchased by the system, and the iPad will still be available to the whole family with all the other apps, and as a backup device. Thanks SO much for sharing Caleigh's experience with it. PS - if I figure out a mounting system, I'll let you know.
Holly: I found your site today! Caleigh is adorable! I have a little boy who is using s Dynavox. UGH! So heavy, bulky, pain in the neck. The case just broke and it was sent back once for a hard drive. It is not even a year old! A one year warranty will cost $555.00 and the district won't pay because the insurance bought it. How much memory is in your Ipad? I am thinking of getting him one for home. I hate taking that Dynavox out and it is so heavy for transporting. Can you install your own pics? What software do you have? How much is everything? Please help! Thanks!!!! kemigh@nycap.rr.com
I am a Speech Pathologist working with a 4-year-old boy with some significant apraxia issues- not CP but a lot of the same resulting struggles. Our school district bought an iPad for him to use in the special ed preschool classroom and his mom and I have been collaborating on how to make this work best for him. I applaud your diligence in supporting your child and giving her a voice. This device and app have made a huge difference in more than one life, and for significantly less money than the traditional speech output devices! Any suggestions on support for learning the ProLoQuo2Go app? (Message boards, etc?)
Wow, that is awesome. I love the innovation with the glue sticks, how did you get them to stay in place? I need to learn how to set up proloquo2 better. You've inspired me!
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