Sorry about the delay, again. Our oldest (and my favorite) laptop finally succumbed to the virus', and our newest (and the one I almost loathe) had been stepped on, so it's almost impossible to use. Luckily, I can pull some MacGyver tricks and use it. It just drives my slightly batty.
There's been a lot in the past few weeks. We took another trip to Philadelphia. It was just a follow up, to be sure all our plans for surgery are still on track. This appointment, although short, was important. We had a year break, so the doc wanted to be sure the surgery was still needed. A little refresher on the surgery. It will be to nick the tendons on top of the hip to help release those contractions, putting her in a better position to stand. The end result of the appointment was mediocre. The doc is pleased with her progress, and we will hopefully return July/August for surgery. We'll stay for a week; do some therapy and get her fitted for new braces before the surgery, have the surgery, then come home. Then return in a month to get the new braces and her casts off. All in all, it was a nice, smooth trip.
She also had a few other appointments with doctors here at our local Shriner's. Anabelle has a follow up with an ENT for her torticollis. He also is pleased with her progress, and said she should be able to avoid surgery. Which is great because I didn't even know that was in the cards! It's still very noticeable, especially when she is tired. The other appointment was a follow up with her upper extremities ortho. We talked about possibly doing dorsal carpal wedge osteotomy on one of her wrists. It's been decided after talking to wait and see how she is mobile after her legs are taken care of. It may be better for her to leave her wrists as is if she does use a wheelchair later. It'd be easier for her to transfer with flexed (bent) wrists rather than wrists stuck in extension (out straight). We plan to follow up in another 6 months. She also had a photo shoot so we could collaborate with the upper doc in Philly and see what he thinks. Luckily Ana has an amazing occupational therapist who accompanied us to this appointment. It helped to have someone there who spoke the same language as the doctor, and convey what we really wanted to. And just like the two doctors before, this one was just as pleased with Miss Bear's progress. We also got to show off Ana's WREX, although her doc didn't seemed to impressed. She didn't even ask for a demo. It's ok, Ana's still getting use to it.
Feeding therapy has also been in the picture lately. Not sure if I mentioned it before. Her therapist is happy with how in love with food this little one is. We are still under the directive to not even attempt to replace nutrition in any way with oral feeding, but with how much this girl loves her food, it's hard not to think she's getting tons of nutrition out of it. Looking back, she really has come so far with her breathing and eating. It's amazing to see.
Until the next time I feel like pretending to be McGyver...
With love,
The Polks
Showing posts with label occupational therapy. Show all posts
Showing posts with label occupational therapy. Show all posts
Sunday, April 20, 2014
Tuesday, March 11, 2014
Helllo 2014!
Hey there! It's me, Kayla. I know, it's been a while. If I thought we were a busy family before... Let me take a moment and catch you up!
Miss Anabelle just turned TWO! I still can't believe it. She's such a big kid now. She talks and understands more than I am ready for. This year she was able to eat her cake! Although, she wasn't interested in the cake as much as she devoured the icing.
I will (mostly out of need) to keep it brief. I find myself starting an update, getting distracted, forgetting what I have already wrote, then just start over. I've done this about 8 times now...
In brief... Anabelle is eating orally now! She's still working on certain textures, but the desire is there. She loves eating. As apparent in the photo above. She does still eat through her feeding tube, which is a G-tube now. We have switched from a formula diet to a blended foods diet. At first, we were really crazy and counted calories and milliliters and charted and went crazy. Then meet with a nutritionist. She advised us to add protein and just put whatever we feed the older girls into a blend, and wa la. We have a 2 week follow up in 6 days. She's already gained 2 pounds. In just over a week. After 8 months of nothing... It's pretty spectacular.
She's a scooting pro now. At times she does get frustrated because her sisters can outrun her. We are practicing with a power wheelchair in physical therapy, and she's doing alright. She's also practicing with a gait trainer. It's a tad too big for her still, so the focus is to get her comfortable in it.
Also.. Ana is now the proud owner of an exoskeleton. Her's is for her arms. You may have see an article circulating around.. and it's similar to that. She is also a work in progress with using this. Tonight she actually scooted over to it and asked for her arms. Then got distracted and changed her mind to shoes.
Speaking of arms.. I recently spoke with Anabelle's uppers doctor. We talked about surgery. The surgery is called a dorsal carpal wedge osteotomy. She would also a procedure to help take Ana's thumb out of her palm a little. We have a follow up next month, so I'll post more then.
Oh, and boy does this kid have attitude. She is very vocal. Sometimes she may not being saying words necessarily, but she will make sure you know how she is feeling. I feel she is getting frustrated with not being able to always communicate her needs, or do it herself, so she becomes Monster Ana. She actually had her first time out last night because of it. I mean... you think she's so small and cute and nice... just wait until you are in the path of something she wants. Let's put it like this, she has no in-between. It's high or low. Happy or Freak Out. The terrible twos have hit the Polk house yet again. So, it's something we're working on.
Amelia and Allison are really showing more interest in her. Before their interest primarily laid in helping with the baby, not so much in the baby itself. Don't get me wrong, they still cuddled and loved her. But now they play with her. They are including her and realizing knows what's going on now. All of this is just age stuff. And she's finally caught up to where she's realizing (to a certain point) what they are playing, and plays along. It's wonderful to see the bonds they are creating.
And that's a 'brief' update. I will post again on Sunday. If I don't, please hold me accountable! I am so easily distracted, it's not even funny.
With love,
The Polks
Miss Anabelle just turned TWO! I still can't believe it. She's such a big kid now. She talks and understands more than I am ready for. This year she was able to eat her cake! Although, she wasn't interested in the cake as much as she devoured the icing.
I will (mostly out of need) to keep it brief. I find myself starting an update, getting distracted, forgetting what I have already wrote, then just start over. I've done this about 8 times now...
In brief... Anabelle is eating orally now! She's still working on certain textures, but the desire is there. She loves eating. As apparent in the photo above. She does still eat through her feeding tube, which is a G-tube now. We have switched from a formula diet to a blended foods diet. At first, we were really crazy and counted calories and milliliters and charted and went crazy. Then meet with a nutritionist. She advised us to add protein and just put whatever we feed the older girls into a blend, and wa la. We have a 2 week follow up in 6 days. She's already gained 2 pounds. In just over a week. After 8 months of nothing... It's pretty spectacular.
She's a scooting pro now. At times she does get frustrated because her sisters can outrun her. We are practicing with a power wheelchair in physical therapy, and she's doing alright. She's also practicing with a gait trainer. It's a tad too big for her still, so the focus is to get her comfortable in it.
Also.. Ana is now the proud owner of an exoskeleton. Her's is for her arms. You may have see an article circulating around.. and it's similar to that. She is also a work in progress with using this. Tonight she actually scooted over to it and asked for her arms. Then got distracted and changed her mind to shoes.
Speaking of arms.. I recently spoke with Anabelle's uppers doctor. We talked about surgery. The surgery is called a dorsal carpal wedge osteotomy. She would also a procedure to help take Ana's thumb out of her palm a little. We have a follow up next month, so I'll post more then.
Oh, and boy does this kid have attitude. She is very vocal. Sometimes she may not being saying words necessarily, but she will make sure you know how she is feeling. I feel she is getting frustrated with not being able to always communicate her needs, or do it herself, so she becomes Monster Ana. She actually had her first time out last night because of it. I mean... you think she's so small and cute and nice... just wait until you are in the path of something she wants. Let's put it like this, she has no in-between. It's high or low. Happy or Freak Out. The terrible twos have hit the Polk house yet again. So, it's something we're working on.
Amelia and Allison are really showing more interest in her. Before their interest primarily laid in helping with the baby, not so much in the baby itself. Don't get me wrong, they still cuddled and loved her. But now they play with her. They are including her and realizing knows what's going on now. All of this is just age stuff. And she's finally caught up to where she's realizing (to a certain point) what they are playing, and plays along. It's wonderful to see the bonds they are creating.
And that's a 'brief' update. I will post again on Sunday. If I don't, please hold me accountable! I am so easily distracted, it's not even funny.
With love,
The Polks
Tuesday, March 19, 2013
Philly Part 2
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
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
Monday, October 1, 2012
crazy. beautiful
Brace yourself, it's a long one.
I've been thinking about doing an update daily. What to write, include, etc. I've been thinking about how personal to make it, what parts of our lives to include. I know personally I read other blogs and feel like I belong. Belong to a club of sorts. A club that doesn't judge, a club where I am not alone, a club where everyone understands.
First I will update about Ana's medical stuff...
We have had more therapy visits. One 'feeding evaluation', and some occupational therapy (OT).
Of course Anabelle didn't have a normal feeding evaluation. Because she doesn't eat. But it was just following up with her speech therapist and see what we can do to help her be ready to eat when she can. Setting up the appointment was frustrating. The receptionist said the have her hungry, but not starving. This way she will show them how she eats. Well, she doesn't eat. She proceeded to disagree with me and was totally confused and baffled with my responses. I told her I know what needs to happen, and don't worry about it.
She is currently receiving occupation therapy twice a week through CCS. They have to submit a plan to her doctor for approval. The plan includes where she is at, goals, expectations, etc. It was nice reading the parts about how she is a very visual and happy baby. It was devastating reading the parts about her being at a 12 week development mark, how drastic her AMC really is, and just how much therapy they think she needs and how much she needs help with.
I think it hits so hard because I have procrastinated thinking about life to come. Since we found out that Anabelle had something different going on (at 20 weeks prenatally), it's been a wait and see process. It still is, but some things are becoming evident. She is 7 months old (today, YAY!) but physically where a 3 months old is. It's hard to see it written down on paper. It's hard to see other kids her age at the store, in waiting rooms, at the park. Anywhere life normally takes you.
Like I said, it only gets to me sometimes. Mostly I am just so thrilled that she is gaining weight and is happy! But I think these are reasons I have avoided updating because it makes me sit down and think about her progress. Her very very slow progress.
But good news! She was plateauing for a few weeks on weight. We slowly upped her feedings, and now she is doing just fine! Her GI is micromanaging her for a few weeks to ensure things are under control and she is on the right track. This means weekly appointments. And since both us and her are so busy, we get to see her Monday mornings at 6:45 AM. Anabelle isn't loving these appointments, and gets mad when I wake her up. She has done good though! She has joined the 12 pound club! Next Monday if things keep going good we are going to switch from formula to a blended diet. This means blending foods! Actual food! I don't know all about it yet, but she mentioned spinach, kael, oil... and that kids usually do much better on blended diets, especially kids with reflux. She is an awesome doctor. Always listens, very open to ideas, not all medical. Realized that we are people that have to live with this. We talked about this on Monday, and she was explaining how she advocates for her families. That right there was awesome. Her families, not patients. She realizes this effects the whole family. LOVE her!
*update to the update*
I wrote this a week ago, and GI has been.. iffy lately. Not the doc. Wednesday I was giving night meds and her tube clogged. It happens. Every time I stress, but we can always get it unclogged. I guess we put too much pressure on it and the tube popped. Totally broke. Done. Off to the ER. Since IR didn't want to come in that night, she had to be admitted until they came in the next morning to get her a new tube. They said it'd be an easy experience, smooth. Put a guide wire in the tube, take the old tube out, put the new tube over the guide wire, place it, then take the guide wire out. Easy! WRONG. The tube was so clogged they couldn't put the guide wire through, so they had to do the entire procedure. And since she doesn't do great with anesthesia, and they said it'd be simple and anesthesia wouldn't be necessary, we didn't do it. WRONG, again. I got to be with her, and the entire time was horrid. I hate myself for letting it happen and her go through that pain. Then Saturday night I was doing meds again, and the damn tube clogged, again. I just balled. I called the GI to see if there was anything else I could do that I hadn't tried, there wasn't. Per her instructions we went in Sunday morning. We went in at 7:00 am and IR couldn't change her tube until 4:00 pm. ALL day without food. And this time we used Propofol and she didn't have to be awake. But then all last night and today she just isn't her. So I took her into the ER. They say she has gas and it's just the side effects from Propofol. We see her GI in the morning so I was done with them. There were a lot of people with coughs and contagious stuff today. So done with the hospital. I wish I could run it and make things run smoothly.
Last Friday Anabelle meet with Neurology. He wants to wait until the muscle biopsy comes back, but depending on what the results are wants to do another MRI. I'm not exactly sure why (I didn't go), but wanting to check out the nervous system is my guess.
OH!!! BIG NEWS!!! We have an appointment for Shriner's in Philadelphia! November 5th :) I am terrified things will all fall apart and we won't be able to make it. I also haven't really ever traveled, so I am terrified. Scared of traveling with a baby, a baby with feeding tube, etc etc. But I am hoping things work out, and am trying to prevent them from falling apart. I really want to go out there and see those doctors. The lower extremity doctors here are upsetting. They are unwilling to coordinate. Last week she was suppose to get casted again. Kyle took her in, and they make it seem like we are burdening them. In the end, he walked out without casts. The last casts we got, a few weeks ago, were too tight. Since they use soft casts I am able to take them off at home, which I did. I felt like her care was being compromised. So I am excited and can't wait to see what Philadelphia has to offer.
She is doing ok overall. Hopefully tomorrow her GI can give us more answers.
Amelia and Allison are doing good. Amelia is wanting more attention from me, and I can't give it to her all the time. It's hard to balance attention.
Lately I have been conflicted. Conflicted over having 'typical' kids and a special needs kid. I am so happy and grateful that my older girls are healthy, are able to do things on their own, for the fact that I have never worried if they will be able to live independently, and on and on and on. In the other hand, I am frustrated because I know these things will be hard for Anabelle. I don't know exactly how to explain it. I try to not let AMC effect things in our lives so much. Just take it for what it is and conquer it. Again, the moments of frustration know how to creep its way in.
But I wouldn't change our life for anything. I am thrilled with each and every day that we have these beautiful girls, and that they are ours. I love them all so much and couldn't imagine life without them. I am blessed to have them, blessed to have such a wonderful partner to go through this crazy beautiful life with.
With love,
The Polks
I've been thinking about doing an update daily. What to write, include, etc. I've been thinking about how personal to make it, what parts of our lives to include. I know personally I read other blogs and feel like I belong. Belong to a club of sorts. A club that doesn't judge, a club where I am not alone, a club where everyone understands.
First I will update about Ana's medical stuff...
We have had more therapy visits. One 'feeding evaluation', and some occupational therapy (OT).
Of course Anabelle didn't have a normal feeding evaluation. Because she doesn't eat. But it was just following up with her speech therapist and see what we can do to help her be ready to eat when she can. Setting up the appointment was frustrating. The receptionist said the have her hungry, but not starving. This way she will show them how she eats. Well, she doesn't eat. She proceeded to disagree with me and was totally confused and baffled with my responses. I told her I know what needs to happen, and don't worry about it.
She is currently receiving occupation therapy twice a week through CCS. They have to submit a plan to her doctor for approval. The plan includes where she is at, goals, expectations, etc. It was nice reading the parts about how she is a very visual and happy baby. It was devastating reading the parts about her being at a 12 week development mark, how drastic her AMC really is, and just how much therapy they think she needs and how much she needs help with.
I think it hits so hard because I have procrastinated thinking about life to come. Since we found out that Anabelle had something different going on (at 20 weeks prenatally), it's been a wait and see process. It still is, but some things are becoming evident. She is 7 months old (today, YAY!) but physically where a 3 months old is. It's hard to see it written down on paper. It's hard to see other kids her age at the store, in waiting rooms, at the park. Anywhere life normally takes you.
Like I said, it only gets to me sometimes. Mostly I am just so thrilled that she is gaining weight and is happy! But I think these are reasons I have avoided updating because it makes me sit down and think about her progress. Her very very slow progress.
But good news! She was plateauing for a few weeks on weight. We slowly upped her feedings, and now she is doing just fine! Her GI is micromanaging her for a few weeks to ensure things are under control and she is on the right track. This means weekly appointments. And since both us and her are so busy, we get to see her Monday mornings at 6:45 AM. Anabelle isn't loving these appointments, and gets mad when I wake her up. She has done good though! She has joined the 12 pound club! Next Monday if things keep going good we are going to switch from formula to a blended diet. This means blending foods! Actual food! I don't know all about it yet, but she mentioned spinach, kael, oil... and that kids usually do much better on blended diets, especially kids with reflux. She is an awesome doctor. Always listens, very open to ideas, not all medical. Realized that we are people that have to live with this. We talked about this on Monday, and she was explaining how she advocates for her families. That right there was awesome. Her families, not patients. She realizes this effects the whole family. LOVE her!
*update to the update*
I wrote this a week ago, and GI has been.. iffy lately. Not the doc. Wednesday I was giving night meds and her tube clogged. It happens. Every time I stress, but we can always get it unclogged. I guess we put too much pressure on it and the tube popped. Totally broke. Done. Off to the ER. Since IR didn't want to come in that night, she had to be admitted until they came in the next morning to get her a new tube. They said it'd be an easy experience, smooth. Put a guide wire in the tube, take the old tube out, put the new tube over the guide wire, place it, then take the guide wire out. Easy! WRONG. The tube was so clogged they couldn't put the guide wire through, so they had to do the entire procedure. And since she doesn't do great with anesthesia, and they said it'd be simple and anesthesia wouldn't be necessary, we didn't do it. WRONG, again. I got to be with her, and the entire time was horrid. I hate myself for letting it happen and her go through that pain. Then Saturday night I was doing meds again, and the damn tube clogged, again. I just balled. I called the GI to see if there was anything else I could do that I hadn't tried, there wasn't. Per her instructions we went in Sunday morning. We went in at 7:00 am and IR couldn't change her tube until 4:00 pm. ALL day without food. And this time we used Propofol and she didn't have to be awake. But then all last night and today she just isn't her. So I took her into the ER. They say she has gas and it's just the side effects from Propofol. We see her GI in the morning so I was done with them. There were a lot of people with coughs and contagious stuff today. So done with the hospital. I wish I could run it and make things run smoothly.
Last Friday Anabelle meet with Neurology. He wants to wait until the muscle biopsy comes back, but depending on what the results are wants to do another MRI. I'm not exactly sure why (I didn't go), but wanting to check out the nervous system is my guess.
OH!!! BIG NEWS!!! We have an appointment for Shriner's in Philadelphia! November 5th :) I am terrified things will all fall apart and we won't be able to make it. I also haven't really ever traveled, so I am terrified. Scared of traveling with a baby, a baby with feeding tube, etc etc. But I am hoping things work out, and am trying to prevent them from falling apart. I really want to go out there and see those doctors. The lower extremity doctors here are upsetting. They are unwilling to coordinate. Last week she was suppose to get casted again. Kyle took her in, and they make it seem like we are burdening them. In the end, he walked out without casts. The last casts we got, a few weeks ago, were too tight. Since they use soft casts I am able to take them off at home, which I did. I felt like her care was being compromised. So I am excited and can't wait to see what Philadelphia has to offer.
She is doing ok overall. Hopefully tomorrow her GI can give us more answers.
Amelia and Allison are doing good. Amelia is wanting more attention from me, and I can't give it to her all the time. It's hard to balance attention.
Lately I have been conflicted. Conflicted over having 'typical' kids and a special needs kid. I am so happy and grateful that my older girls are healthy, are able to do things on their own, for the fact that I have never worried if they will be able to live independently, and on and on and on. In the other hand, I am frustrated because I know these things will be hard for Anabelle. I don't know exactly how to explain it. I try to not let AMC effect things in our lives so much. Just take it for what it is and conquer it. Again, the moments of frustration know how to creep its way in.
But I wouldn't change our life for anything. I am thrilled with each and every day that we have these beautiful girls, and that they are ours. I love them all so much and couldn't imagine life without them. I am blessed to have them, blessed to have such a wonderful partner to go through this crazy beautiful life with.
With love,
The Polks
Saturday, May 26, 2012
One day at a time
Yesterday Anabelle had a sleep study scheduled. However, Kyle and I didn't feel comfortable with her G-tube site. It was red, sore, oozing, and she was VERY fussy. So I canceled (and will reschedule) the sleep study and it was off to the ER. I had called her primary, her surgeons office, and her GI before going. It is the last place I'd like her to be, filled with who knows what kind of germs, and she needs the sleep study over a few hours in the ER. However, no one had gotten back to me throughout the day, or they directed me elsewhere. So around 6:30 I decided to take her in.
We spent a total of about 3.5 hours there. Answered many questions about Miss Anabelle, to patients and nurses alike. The biggest wait was for the pediatric surgeon. She was in the OR... I really like her though. There are 5 pediatric surgeons for Sutter, and we have met 4 of the 5. It's nice too because there are two in particular who have followed Anabelle since birth and know her progress and just her overall. Well, she doesn't have an infection or anything luckily. But the tube was moving around too much, it was 'wallowing'. So basically, the whole is getting bigger then the tube. This is causing all of the redness and oozing. It wasn't oozing puss, rather just milk and gastric fluids. She put some gauze and tape to hold things in place and absorb the liquids. We just change it when it is wet, and it seems to be helping. The past few days Anabelle has been just flat out fussy. Hard to console, crying non stop, etc etc. But now I think it's more normal baby fuss. Which is a nice change.
Also, the surgeon advises that we no longer hold her chest to chest. With the way Anabelle... is, especially her legs are, it's been the easiest and seems to be her favorite. It's very difficult to cradle her. It's possible, but difficult. Her hips don't come in as much as they should, and her head control is lacking. So I will admit it, I started crying. She did a good job trying to console me. It's just hard because I want to give her comfort, and I can't even hold her how she wants. Like everything in life, there is a reason.
We spent a total of about 3.5 hours there. Answered many questions about Miss Anabelle, to patients and nurses alike. The biggest wait was for the pediatric surgeon. She was in the OR... I really like her though. There are 5 pediatric surgeons for Sutter, and we have met 4 of the 5. It's nice too because there are two in particular who have followed Anabelle since birth and know her progress and just her overall. Well, she doesn't have an infection or anything luckily. But the tube was moving around too much, it was 'wallowing'. So basically, the whole is getting bigger then the tube. This is causing all of the redness and oozing. It wasn't oozing puss, rather just milk and gastric fluids. She put some gauze and tape to hold things in place and absorb the liquids. We just change it when it is wet, and it seems to be helping. The past few days Anabelle has been just flat out fussy. Hard to console, crying non stop, etc etc. But now I think it's more normal baby fuss. Which is a nice change.
Also, the surgeon advises that we no longer hold her chest to chest. With the way Anabelle... is, especially her legs are, it's been the easiest and seems to be her favorite. It's very difficult to cradle her. It's possible, but difficult. Her hips don't come in as much as they should, and her head control is lacking. So I will admit it, I started crying. She did a good job trying to console me. It's just hard because I want to give her comfort, and I can't even hold her how she wants. Like everything in life, there is a reason.
Don't get me wrong. It hasn't been easy. She will give me a look her and there. It feels like she is trying to ask me 'Mom, what the heck are we doing!?' I know that being forced to do this will help her all around. Help her tube to heal, help her legs come down and get together, and more.
I mean, just look at her progress so far! The picture on the left is from the NICU, maybe at a week old. The picture on the right is from tonight, at 12 weeks old. We haven't started any real intense therapy yet either. Just a little passive range of motion. AMAZING! Her legs still come up if she is laying in the right position, but the fact that they can come down is just amazing.
Next week we see our OT (Part of the early development program here) and hopefully start doing craniosacral therapy!
With love,
The Polks
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