WE ARE HOME!
Well, we've been home since Saturday technically...
Let me pick up from where I left off last.
On Thursday we had more therapy. It was actually very beneficial because we were able to move the time so Ana wasn't so exhausted from no naps. She was a bit tired still, but actually worked! We focused on rolling and scooting. Anabelle really liked to roll. We tried to get her into a prone position when she would roll on to her belly, she cried. Prone means she is up putting weight onto her forearms, like in an army crawl position. I think it might be to much of a stretch on the muscles in her shoulder/arm pit area since those muscles are really tight. There was also a wedge we used to help her learn to scoot. They has a smaller wedge that basically looked like a little slide, Ana sized. It has an inch lip on each side, and it was about 18 inches from top to bottom of the slide. We put Ana at the top, and at first helped her scoot down to show her how to do it. She was fine if we were doing it for her. But she got the idea, and did it solo! However... it scared her, and she cried. She's not use to moving on her own, so it was scary not to have our hands on her while she moved, she didn't feel secure. But she is getting the idea, and I think she will progress quickly!
Friday: We had PT first. It was another good day! More of the same, but she is getting the idea, and I think it will only take a few months until she is all over the place and we will have to really baby proof again!
Saturday was our flight home. It was an early flight, especially since we had to return a car and was worried about it being spring break and the cut backs to TSA. We had a flight from Philly to Chicago, then Chicago home. With a 3 hour layover in Chicago. Unfortunately plans changed. On the flight to Chicago Anabelle's feeding tube broke. Now, she has a straight J tube. J is for Jejunum. Jejunum is the first part of your small intestine. The more popular tube is a G tube, and that goes directly into your stomach. Ana's tube bypass the stomach and goes directly to the jejunum. Her tube has to be replaced in the hospital under anesthesia. We aren't even give a replacement just in case we run into this issue. Also, because of the size she has, the part that comes out of her stomach hangs out about 6 inches or so. The tube broke in that part. I couldn't clamp it, so it just kept leaking. I had no choice but to stop her food. I dried it all up, and used some tape to try to stop it. So we finally get to Chicago. I learn that our plane is delayed by two hours. So 3 hour layover is now a 5 hour layover. This means Ana won't be eating this whole time, and it means getting her to the ER will take even longer. I tried calling doctors to get them to help expedite our process. Nope. Ana couldn't sleep well. She doesn't feel hunger, but her sugars and whatnot drop. You know that feeling when you haven't eaten for awhile, and you feel kind of sick? Yep, that's it. Then the plane was delayed another hour. At this point had been up traveling for 11 hours. Then our plane got in, and we had about a 4 1/2 hr plane ride home. Make that 11 hours 15 1/2. We land, go to get our bags, and learn because of the delays, they misplaced one bag. So I file a baggage claim. Then finally off the hospital!
We have to go to the ER, see if the department who replaces tubes will do it that night, and of course they won't. They have to admit Ana since by this point it has been over 24 hours since she's had anything, and she's dehydrated and her numbers have dropped. I usually have a really good experience with the nurses and doctors.. However this nurse rubbed me the wrong way. Maybe it was the lack of sleep and food on my end. Long story short, we finally get admitted, get her in bed, get her some sugar and electrolytes, sulfate, etc.. Which I learned the next morning they did incorrectly... And she starts to do better, but still exhausted. Get her a new tube, finally, and get out of dodge.
We got home Sunday evening. I am not sure how mom's travel solo for this trip repeatedly. I don't think I can do it again. I am still trying to recoup from this trip. Luckily Ana is able to nap:) However today (Tuesday) she is acting like her tube is in the wrong place. We can wait till morning to check, but hopefully it's fine.
Oh, but on top of this, Anabelle has been battling pink eye and a cold. She is one little trooper. Makes me feel like a big wimp sometimes :)
Hopefully that is the end to our excitement for awhile.
With love,
The Polks
Tuesday, March 19, 2013
Wednesday, March 13, 2013
Philly!
So it's been a while, and I have lots to catch up on. I am very unorganized and the 'every Sunday post' thing isn't working as well as planned. I apologize.
Last weekend was Anabelle's birthday! YAY! It was a blast. In summary, we spend quality time with quality people. Anabelle was a tad fussy since she decided to skip nap time. But she did enjoy walking around the arcade with the lights and noises!
This week we are in Philadelphia. Dad and two big sisters stayed back home so the girls could stay in school, and because having all 5 of us here would be complete chaos.
To recap thus far:
Monday: She went to clinic. Followed up with uppers and lowers. Uppers said he likes the range she has gained. Still just wants to watch to see how she grows and develops before thinking about any kind of surgery. I showed him the night splints we had made at home, and he is having the O/T here makes some others. The ones we had were very large and bulky. And honestly we never used them because of this. Lowers said he is also pleased. He is happy her ankles have stayed in place, and how much range she has gained in her knees and legs. One knee bends about 60 degrees while he other is about 70. Which is really good considering a year ago they were about hyper-extended about 10 degrees. We had to lengthen her KAFO's because she's grown a few inches! Very exciting! Also, he doesn't think she will need an osteotomy. An osteotomy is an invasive surgery where they go in, cut the bone (depending on what type of osteotomy, in Ana's case, it'd be her femur), re-position it in a better place, then pin it up, sew them up, and cast them for weeks. Instead of doing that, he thinks he can correct her legs by a simple soft tissue release. For Ana, since she was born with her toes by her ears, the tissues/joints in the front hip area, is very tight. This makes it impossible for her legs to come down and lay flat. It seems like a fairly simple surgery, in and out. She'd be casted for 4 weeks, with a bar in between her legs to keep them out. Now sure why that is, forgot to ask. But once that is done, that means she will be able to stand up straight. Which means we can really focus on walking!
She also had PT this day. In PT she learned quickly how to manipulate the therapist to get her sympathy. We discussed our goals for the week. Mine is mobility. She sees her sisters running around, and I can see she wants to be involved. I just don't know how to get her to be.. So we came up with the solution of scooting, or rocking.. Just moving her legs and bottom around so she can get around. Anabelle isn't totally on board yet with this idea.
Tuesday: In the morning we meet with OT. They made her some wrist splits. These splits are night splits. Made of a lighter/thinner material. They stretch her wrist into extension (out straight), her thumbs out into extension, and her fingers into extension while flexing her knuckles. Lots of stretches from one split. Then we had a few hours before PT. And kind of slept on and off. Not very well though. Then PT. She didn't like it. But she worked. A little. She showed off her kicking skills at least :)
Wednesday: This morning was OT again. They made some adjustments to the splits, and put them on her for about 20 minutes. They didn't have time for a full session... for whatever reason... so elbow splits were not made. Then we had a few hours before PT. I thought Ana would sleep since she was tired......NOPE. She decided to go into zombie mode. Cry. Whine. Anything but sleep. So PT time rolled around, and she was already done. She didn't even want to sit up half the time. I had to take a 5 minute break and walk around with her to calm her down. There were times that she was ok with being there, but still wouldn't work. It was really frustrating. Only because we didn't have her OT scheduled originally, and then they decided they didn't have time. So that means we got very little accomplished today...
The joys of it all. Oh, then we got back to the Ronald McDonald house, and I realized I left my phone charger somewhere. I thought in the cafeteria, but they didn't find it.. So now I get to go on a hunt for a Target to find one. But of course I threw in some laundry before I noticed the missing charger, so I have to wait for that to be done.
Blah. I wish Target stocked some magical pills that took away sleep deprivation I'm sure the line would be out the door for those! This whole day light savings/time zone change has really messed my sleep up. I'm a total wimp!
While the laundry was going, I thought I could catch up on some work.. But it seems like the password I had before I left no longer works for my work email.. and I don't want to drain my phone to call the help desk to fix it before I get a new charger since I use it for GPS... So I'm sorry boss ladies! I am trying to work! Promise!
But I have meet some great AMC families while here. We had dinner last night together. Unfortunately I am staying at a different Ronald McDonald house, but the drive isn't bad at all. Just over a huge scary terrifying bridge. No big. :)
I will update more later with pictures to boot!
Thanks again to EVERYONE! We wouldn't be here without everyone doing what they do to help us :)
With love,
The Polks
Last weekend was Anabelle's birthday! YAY! It was a blast. In summary, we spend quality time with quality people. Anabelle was a tad fussy since she decided to skip nap time. But she did enjoy walking around the arcade with the lights and noises!
This week we are in Philadelphia. Dad and two big sisters stayed back home so the girls could stay in school, and because having all 5 of us here would be complete chaos.
To recap thus far:
Monday: She went to clinic. Followed up with uppers and lowers. Uppers said he likes the range she has gained. Still just wants to watch to see how she grows and develops before thinking about any kind of surgery. I showed him the night splints we had made at home, and he is having the O/T here makes some others. The ones we had were very large and bulky. And honestly we never used them because of this. Lowers said he is also pleased. He is happy her ankles have stayed in place, and how much range she has gained in her knees and legs. One knee bends about 60 degrees while he other is about 70. Which is really good considering a year ago they were about hyper-extended about 10 degrees. We had to lengthen her KAFO's because she's grown a few inches! Very exciting! Also, he doesn't think she will need an osteotomy. An osteotomy is an invasive surgery where they go in, cut the bone (depending on what type of osteotomy, in Ana's case, it'd be her femur), re-position it in a better place, then pin it up, sew them up, and cast them for weeks. Instead of doing that, he thinks he can correct her legs by a simple soft tissue release. For Ana, since she was born with her toes by her ears, the tissues/joints in the front hip area, is very tight. This makes it impossible for her legs to come down and lay flat. It seems like a fairly simple surgery, in and out. She'd be casted for 4 weeks, with a bar in between her legs to keep them out. Now sure why that is, forgot to ask. But once that is done, that means she will be able to stand up straight. Which means we can really focus on walking!
She also had PT this day. In PT she learned quickly how to manipulate the therapist to get her sympathy. We discussed our goals for the week. Mine is mobility. She sees her sisters running around, and I can see she wants to be involved. I just don't know how to get her to be.. So we came up with the solution of scooting, or rocking.. Just moving her legs and bottom around so she can get around. Anabelle isn't totally on board yet with this idea.
Tuesday: In the morning we meet with OT. They made her some wrist splits. These splits are night splits. Made of a lighter/thinner material. They stretch her wrist into extension (out straight), her thumbs out into extension, and her fingers into extension while flexing her knuckles. Lots of stretches from one split. Then we had a few hours before PT. And kind of slept on and off. Not very well though. Then PT. She didn't like it. But she worked. A little. She showed off her kicking skills at least :)
Wednesday: This morning was OT again. They made some adjustments to the splits, and put them on her for about 20 minutes. They didn't have time for a full session... for whatever reason... so elbow splits were not made. Then we had a few hours before PT. I thought Ana would sleep since she was tired......NOPE. She decided to go into zombie mode. Cry. Whine. Anything but sleep. So PT time rolled around, and she was already done. She didn't even want to sit up half the time. I had to take a 5 minute break and walk around with her to calm her down. There were times that she was ok with being there, but still wouldn't work. It was really frustrating. Only because we didn't have her OT scheduled originally, and then they decided they didn't have time. So that means we got very little accomplished today...
The joys of it all. Oh, then we got back to the Ronald McDonald house, and I realized I left my phone charger somewhere. I thought in the cafeteria, but they didn't find it.. So now I get to go on a hunt for a Target to find one. But of course I threw in some laundry before I noticed the missing charger, so I have to wait for that to be done.
Blah. I wish Target stocked some magical pills that took away sleep deprivation I'm sure the line would be out the door for those! This whole day light savings/time zone change has really messed my sleep up. I'm a total wimp!
While the laundry was going, I thought I could catch up on some work.. But it seems like the password I had before I left no longer works for my work email.. and I don't want to drain my phone to call the help desk to fix it before I get a new charger since I use it for GPS... So I'm sorry boss ladies! I am trying to work! Promise!
But I have meet some great AMC families while here. We had dinner last night together. Unfortunately I am staying at a different Ronald McDonald house, but the drive isn't bad at all. Just over a huge scary terrifying bridge. No big. :)
I will update more later with pictures to boot!
Thanks again to EVERYONE! We wouldn't be here without everyone doing what they do to help us :)
With love,
The Polks
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