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 doctor appointments. Show all posts
Showing posts with label doctor appointments. 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
Friday, February 1, 2013
Big long words
Our trip to Seattle was well worth it. Dr. Judith Hall is one of the kindest doctors I have meet. Not only does she have a wealth of knowledge to offer up, she sincerely showed that she cared. Not only for the time she was sitting with us, but for Anabelle's future. For the future of our family. She wanted to focus on Anabelle as a person, not just a diagnosis.
I know that seems like an oxymoron because I went searching for a more definitive diagnosis. But I didn't go searching because I needed to validate anything. But I just wanted to have more information.
But to the juicy parts.
Dr. Hall believes Anabelle is in the Amyoplasia spectrum. And on the severe side of Amyoplasia. She cannot say definitively, but believes this is correct due to the Gastroschisis along with the AMC. I'm getting ahead of myself.
The reasons she cannot say it's Amyoplasia 100%:
- Kids are typically presented with their arms stuck straight and legs bent, kind of like a pretzel.
- Anabelle is opposite of this. Even though no two people are effected exactly the same way, Anabelle is pretty far from the typical Amyoplasia kid.
- Anabelle has these long dimples on her forearms and legs. Dimples in AMC are areas that didn't move much at all in utero, causing little to no muscle (and other things) to develop, so the skin basically stays to the bone, making a dimple. Ana has them on her shoulders, elbows, wrists.. All typical places. But Dr. Hall has never seen the ones on the forearms and legs quite as large as Anabelle's. Also, she was puzzled because she has seen kids with dimples on the legs, but shorter ones, and when they do have them, it was caused by the placement of the foot/feet. Meaning the toes were facing up towards the shin. Ana also does not fit that category as her feet were turned out.
Back to why she thinks Amyoplasia in relations to Gastroschisis. She explained that in every big study anyone's done in Gastroschisis that 3-4% of the participants have Arthrogryposis, and of those with AMC, all are Amyoplasia.
She also thinks it was all caused in relations with the vascular system. I can't remember exactly what she was meaning (I know, totally dumb of me), so I will be emailing her shortly for a refresher.
But she cannot say exactly what caused any of it. The AMC or Gastroschisis. But she did say she is running a study of AMC and Gastroschisis/bowel adhesions soon, and will be looking for similarities.
She also said if she finds anyone else with long dimples like Ana that she will be in touch with us. There is another genetic test they can run, more fine tooth then the two we have already ran.
She did say that she recommends us returning to our local geneticists when Anabelle is about 16-18 years.
AND. She said that of course she cannot guarantee anything.. however, in her observations, kids with good hip movement can walk. Anabelle has GREAT hip movement. I know that she isn't so amazing she has a crystal ball or anything... But Ana's uppers (hands/arms) don't function too great, (though she is making great strides!!) so if she can have walking in her pocket, I won't say no to it. No matter what happens she'll be fine, it'd just be nice to have the benefits of lowers.
We also got the chance to meet other AMC families. It was really fun. There was an adorable 3 year old little boy. At first, very shy, but then he started joking around with me. Just made me miss Amelia and Allison all that more. I'm not sure how we're going to make it in March for a week when we go to Philadelphia.
Side note: She is interested in food! We have been giving her little taste of it, and now when she sees food she yells at us if we don't give her tastes. By little tastes, I mean we dap our fingers in what we are eating and put it on her tongue. I cannot wait for the bronchoscope to be done with so we can hopefully start feeding her orally. Although, I don't think that will happen anytime soon. When we give her tastes, she is still swallowing the way she was when she was orally eating. Imagine eating air. That's the closest I can come to to describe what it sounds like. As if she is eating and breathing at once.
Side note #2: So far this month, besides therapy, she has a total of 2 out of the home appointments. TWO! Last summer it was 20. Just shows how much she has improved in the health department.
Promise, pictures in the next post. :D
With love,
The Polk's
Monday, January 28, 2013
Travelin the states
So just a brief update. Without pictures. Booo. I know.
We finally have Anabelle's helmet. The right one. I guess the manufacturer sent the wrong one or wrong material or something... and she ended up with a BLUE SCOOPY DOO helmet for a week.. Very opposite of a little girls helmet.
We ordered a plain white helmet, and are going to order sticker decals for it to dress it up! She is getting more use to it, although her head is still sweating like a pig in it. It's really gross, but we're told that calms down after a few weeks.
Tomorrow we fly out to Seattle for our appointment with the infamous Dr. Judith Hall. Very excited. And nervous. I know it seems silly and pointless for me to seach for the answers we may never get. Like they why, or the specific diagnosis, etc. I am not sure it will help any. But at the same time it might. Even if not, I would like to be prepared just in case Anabelle asks me those questions when she gets older. Not to mention try to be as educated as I can be. I learned last week that I know very little while talking to other AMC families.
They have a luncheon during the clinic for all the AMC families there, which I am really looking forward to.
Oh! And we had a cardiology appointment a while back, and he said she only has a small PFO. And that it's very common, 1 in 5 adults have it and don't even know it. He did notice that her port line is in her heart, which he doesn't like. But he talked with her surgeon and he said it's fine. So we can check cardiology off the list!
And big news!!! She is starting to sit unassisted!!
We sit her on the couch, propped up but laying back, and she will sit herself up off the couch. Sometimes she falls face forward, or falls to the sides. But she is doing so wonderful! It's like she decided that she was done with always using something for support!
This is extra special news. Besides being a huge developmental milestone that is. We are going back to Philadelphia in March for a week of intensive therapy. If she can sit unassisted, it opens the doors for possibilities of assistive devices such as standers, walkers, etc. Also, it opens the door for the possibility of the WREX (a device to help with arm use).
She is getting stronger everyday. We play a game where we hold her hand up and she has to use her own strength to pull it down. She love its and thinks it's hilarious. It's mostly shoulder use, but I'll take it!
AND!! More big news! She was playing on the floor the other day, and I look over, and she's on her tummy. All by herself! She doesn't like that too much because she is face down since she can't get her arms up, but she did it! TWICE. All by herself! She's going to miss her regular therapy this week because of our trip, but I can't wait to tell them.
She is thriving. And learning. And growing. And doing wonderful all around. I am such a proud mama. She is one in about a month, and to see her go through everything she has this past year, and come out on top. I am in awe.
She's a pretty amazing lil gal if I do say so myself.
Thanks everyone for the continued love and support. It really has made a world of difference.
I promise (well.. I hope to) have pictures next time.
With love,
The Polk's
We finally have Anabelle's helmet. The right one. I guess the manufacturer sent the wrong one or wrong material or something... and she ended up with a BLUE SCOOPY DOO helmet for a week.. Very opposite of a little girls helmet.
We ordered a plain white helmet, and are going to order sticker decals for it to dress it up! She is getting more use to it, although her head is still sweating like a pig in it. It's really gross, but we're told that calms down after a few weeks.
Tomorrow we fly out to Seattle for our appointment with the infamous Dr. Judith Hall. Very excited. And nervous. I know it seems silly and pointless for me to seach for the answers we may never get. Like they why, or the specific diagnosis, etc. I am not sure it will help any. But at the same time it might. Even if not, I would like to be prepared just in case Anabelle asks me those questions when she gets older. Not to mention try to be as educated as I can be. I learned last week that I know very little while talking to other AMC families.
They have a luncheon during the clinic for all the AMC families there, which I am really looking forward to.
Oh! And we had a cardiology appointment a while back, and he said she only has a small PFO. And that it's very common, 1 in 5 adults have it and don't even know it. He did notice that her port line is in her heart, which he doesn't like. But he talked with her surgeon and he said it's fine. So we can check cardiology off the list!
And big news!!! She is starting to sit unassisted!!
We sit her on the couch, propped up but laying back, and she will sit herself up off the couch. Sometimes she falls face forward, or falls to the sides. But she is doing so wonderful! It's like she decided that she was done with always using something for support!
This is extra special news. Besides being a huge developmental milestone that is. We are going back to Philadelphia in March for a week of intensive therapy. If she can sit unassisted, it opens the doors for possibilities of assistive devices such as standers, walkers, etc. Also, it opens the door for the possibility of the WREX (a device to help with arm use).
She is getting stronger everyday. We play a game where we hold her hand up and she has to use her own strength to pull it down. She love its and thinks it's hilarious. It's mostly shoulder use, but I'll take it!
AND!! More big news! She was playing on the floor the other day, and I look over, and she's on her tummy. All by herself! She doesn't like that too much because she is face down since she can't get her arms up, but she did it! TWICE. All by herself! She's going to miss her regular therapy this week because of our trip, but I can't wait to tell them.
She is thriving. And learning. And growing. And doing wonderful all around. I am such a proud mama. She is one in about a month, and to see her go through everything she has this past year, and come out on top. I am in awe.
She's a pretty amazing lil gal if I do say so myself.
Thanks everyone for the continued love and support. It really has made a world of difference.
I promise (well.. I hope to) have pictures next time.
With love,
The Polk's
Monday, January 7, 2013
I think I can, I think I can, I think I can
I posted a status update of Facebook that we got the results back from Anabelle's latest sleep study. I didn't go to the appointment, but Kyle told me some numbers over the phone and they were awesome.
But then I just sat down and really compared the numbers. And had to update everyone about how wonderful she is doing!
Her previous sleep study was June 2012. Her last sleep study was December 2012.
Here is the differences
JUNE DECEMBER
Central apnea: 69 12
Mixed apnea: 24 0 (Yes, ZERO!)
Obstructive apnea: 216 2
Hypopnea: 580 38
Desaturations: 484 20
In June her oxygen saturation was 96.1% with a min of 52%. The time below 90% was 17.9%.
In December her oxygen saturation was 92% with a min of 65%. The time below 90% was 7%.
There are more numbers listed. But these are the main (and most impressive) (oh and less confusing) numbers.
They did say she needs to be on oxygen at night. Which she absolutely hates to the maximum. I tried to connect and get her all set up for tonight, but it's been so long it just wasn't working. There is a part for water (to have it not dry her nose out and keep it moist), but when I was connecting it and turned it on, water just shot up like a fountain. Alli was there to help me clean up though. :)
But we are having a tech come by tomorrow to show us how to do it all again. Gotta count our lucky stars that it's been so long since we've used it that we've forgotten how to use it.
While I'm at it...
We meet with her geneticist last week too. Nothing new. I guess he actually cancelled our appointment (forgot to tell us though) because the new tests he ran on her muscle biopsy didn't reveal anything new. And he has no answers or insight as to why what happened happened, or anything to suggests but to continue what were doing. Makes me feel so great to have put her through a muscle biopsy for that. But then again, if the news was different I would be singing a different song.
We go to see Dr. Hall at the end of this month. She is a geneticist who has done lots and lots of AMC research and is supposedly the best around town.
Ok. I'm not ranting and raving about how wonderful Anabelle is doing.
With love,
The Polks
But then I just sat down and really compared the numbers. And had to update everyone about how wonderful she is doing!
Her previous sleep study was June 2012. Her last sleep study was December 2012.
Here is the differences
JUNE DECEMBER
Central apnea: 69 12
Mixed apnea: 24 0 (Yes, ZERO!)
Obstructive apnea: 216 2
Hypopnea: 580 38
Desaturations: 484 20
In June her oxygen saturation was 96.1% with a min of 52%. The time below 90% was 17.9%.
In December her oxygen saturation was 92% with a min of 65%. The time below 90% was 7%.
There are more numbers listed. But these are the main (and most impressive) (oh and less confusing) numbers.
They did say she needs to be on oxygen at night. Which she absolutely hates to the maximum. I tried to connect and get her all set up for tonight, but it's been so long it just wasn't working. There is a part for water (to have it not dry her nose out and keep it moist), but when I was connecting it and turned it on, water just shot up like a fountain. Alli was there to help me clean up though. :)
But we are having a tech come by tomorrow to show us how to do it all again. Gotta count our lucky stars that it's been so long since we've used it that we've forgotten how to use it.
While I'm at it...
We meet with her geneticist last week too. Nothing new. I guess he actually cancelled our appointment (forgot to tell us though) because the new tests he ran on her muscle biopsy didn't reveal anything new. And he has no answers or insight as to why what happened happened, or anything to suggests but to continue what were doing. Makes me feel so great to have put her through a muscle biopsy for that. But then again, if the news was different I would be singing a different song.
We go to see Dr. Hall at the end of this month. She is a geneticist who has done lots and lots of AMC research and is supposedly the best around town.
Ok. I'm not ranting and raving about how wonderful Anabelle is doing.
AH! And Kyle took Allison to get her first haircut EVER. I'm still a little sad over it, but she looooooves it <3 font="font">
This is her being a good. She's learned she can make funny noises with her mouth and tongue
This is her 'Are we done yet mom?' look. I was just trying to get a picture with all of her gear, but she disagreed with the idea
Gotta throw one in of Amelia too, just cause she's a cutie pie.
With love,
The Polks
Friday, November 16, 2012
Pink!
I had a nice long (almost done) update all typed up, couldn't finish it because of life, so I saved instead... And when I get time to come back.. it's vanished.
It was perfect! I'll start from the beginning.
<---- anabelle="anabelle" happy="happy" s="s" so="so">
I apologize if I don't include everything now.. because time goes on and I just forget things :/
Man o man. Have we been a busy family lately.
The most important update, one I am sure everyone is dying to know about.
PHILADELPHIA!
It was perfect! I'll start from the beginning.
<---- anabelle="anabelle" happy="happy" s="s" so="so">
We were flying out of SFO (San Francisco), which is about a 2 or so hours drive for us. We decided to drive to Richmond area and take the BART the rest of the way to the airport. All went well! We got there, check in was great. We had a layover in Denver. Oh and we sat next to a lady on the way to Denver that was SUPER sweet. And Ana smiled tons at her! Which is a huge improvement because she went (and sometimes is going) through a phase where she scream/cries at strangers. A little traumatized from doctors and nurses I think. We get to Philly, that went fine (minus the cab driver not knowing the city...) Go to our hotel. All is great. Ana did great sleeping somewhere foreign.
We decided the next day to go to the hospital early to grab something to eat in the cafeteria before since we were in a hotel. We got to Shriner's about 2 hours before. We filled out all the registration papers and were told to go to clinic. I didn't think that the appointment would be as long as it was, so I think we can just grab something to eat after. Boy was I wrong.
We got called back to a room early. We answered the same ol' medical history stuff. Waited. Saw Dr. Z (the hand expert). He was very nice! He knows and is willing to coordinate with the hand expert at our local Shriner's, whom we have no qualms with. She is actually helping us with our Miracle Flights paper work. He said that a muscle transfer will probably be unlikely for Ana. For two main reasons. 1) Taking good strong muscles from her legs to move them would only make her legs weaker, which doesn't makes sense, and 2) He needs a good nerve(s) to hook the muscle up to, which doesn't seem like it would happen or be easy with her arms. He did say to keep up the range of motion, and that he thinks some elbow splints would help with bending her elbows more. The more they bend, the bigger the possibility for independence. She might not be able to bring her hands to her face, but if she can get her forearm to a tables edge and use her weight to bend to her hand that's up on the table, then she could eat, brush teeth etc. I really hope that is an ok explanation.
Then we meet with the PA (physician's assistant). Talked some more.
Then waited some more.
Then we meet with Dr. vB (lowers expert). He took measurements. How much she can bend (flex) and straighten (extend) everything; ankles, knees, hips, wrists, elbows, shoulders, head... We talked about different options. Explained what we have done so far to him. Never once did he say 'Let's try to get her knees to bend to at least a sitting position.' We decided serial casting would probably be a flop since she's kind of plateaued. So he thinks that AFO's and KAFO's will be better for her. So he put her in plaster casts until the braces are ready for pick up (1 months time). The AFO's will be for her to wear during the day, the KAFO's will be night time. The KAFO's will have a lock on them. This will allow us to flex her knees at night and lock them, and gradually over time keep flexing. But this also gives us the freedom to remove the braces and give her baths, continue therapy, and paint her toenails! For further down the road.. he likes to do hip surgeries around 1-1 1/2 years old. We didn't talk in too much detail only because we were already approaching the 4+ hour mark. But in short, he recommends doing a surgery that just nicks the tendon on her hip that is keeping her from laying flat. I have no idea what tendon, or if that has a name. He also talked about doing a hip osteotomy. This one is big and scary. And we will need some time to talk about it with him more.
Oh and he took x-rays! I'm not sure why x-rays weren't taken locally before treatment started. I think we were just so excited to finally be getting ortho treatment that we were in a daze. But after a while we asked and were told they are not needed. Ok, not going to focus on the negative. He took films of Ana's ankles in a few different positions, her knees fully bent (her fully bent), fully extended, and of her hips. We learned that she has oblique talus. To my understanding, her ankle bones are in socket, but not perfectly. And he found it interesting. He thought she had vertical talus. So interesting to me that this was found, and treatment might differ, because of a simple x-ray. Sorry, I got sidetracked again. I mustn't dwell on the faults of previous doctors. And they point a little downwards. Her right foot arches too. Her knees look fine (need to ask about the patella, totally forgot), and her hips still look great and in socket. YAY!
I just have to say. The ENTIRE staff is amazing! I have tons of little stories. One family has a bunch of kids, two AMCer's, were there, and they also have a brand new baby. BRAND new. So while the kids were getting films (I believe..) the check in gal held the baby for the family! The PA helped us get subway info for our way back to the hotel (but we ended up cabbing it due to time). When people entered the room they didn't just sit and stare, they introduced themselves! Explained their role and why they were there! The entire staff offers their help. If I have any questions they make sure I know how to get a hold of them. And when I call/email, they RESPOND! In a timely fashion to top it off! Oh, another big plus... the doctor does the casting himself! And it's a single bed cast room vs. a 6 bed open curtain cast room where you hear the kid next to you screaming! Oh, and they offer you their left over pizza from their pizza party! Which was a life saver since it was after 5 and we hadn't eaten.
It was so nice meeting other AMC families as well. Seeing their kiddos! We got to chat with a few different moms while waiting to get fitted for braces.
Ana on the other had was not a happy camper. She was wanting sleep and was done with people touching her. Little did we know she was also coming down with a cold.
I've heard Dr. vB's casts are painful, so I packed and used Ana's Tylenol with Codeine.
So our flight home. It was ok.. I felt bad for Ana because she hated her legs being touched, and felt bad for those around us because she was screaming. During our layover in Denver a wonderfully nice lady came up to us. She asked if Ana just had surgery. Oh man, here we go. Explained no, AMC, and what were doing. Luckily Ana was sleeping. Surprise! The lady has a friend with AMC! YAY!! She asked where we were going/coming. Explained that as well. She was floored! Her friend has raved to her about Shriner's Philly, and how great their doctors are. So any adult AMC'er who had a friend in Denver on 11/6, I'd love to get in touch with her again! Very nice lady!!
We get home and Ana is feeling too great. We also had a nurse the day after we get back who was shadowing our regular nurse. But this nurse wanted DETAILS. We don't have everything in writing as most things are a "you try it out and figure out what works at home" kind of thing. Plus we didn't know she was coming, plus we had a doctor appointment. At the doctor appointment Ana spits some brown up. Weird. She has nothing in her stomach, especially nothing brown. The doc says to start an oral med again, but lowers the dose. It has to be oral because it coats the stomach lining, and if it goes through her tube then it won't get to her stomach. So at home I try to give her some. The new dose is .25 ML. 5 ML's equals roughly a teaspoon. 1 ML is about .2 teaspoons. So 0.25 ML is nothing! To us. To Ana it's tons. She chokes, gags, doesn't like it, doesn't know what to do with it. Then she throws up. Big time. And all brown. Off to the ER. I'm not waiting this out. They suspected a bowel obstruction. So they admitted her, to the ICU. Which means constant Pulse ox and monitoring (more wire when holding her, blah). Come to find out I was just giving her too much Tylenol with codeine and she was sick. I was trying to treat the symptoms of the Tylenol with more Tylenol. Mom of the year award goes to me...
Finally four days later Ana was finally smiling again! And back to herself, thank goodness!
OH. And we got the MRI results, but haven't had the follow up. So I'll update when we do that in the beginning of December. But nothing huge was found (at least from what I can read...)
We have a follow up sleep study next month too.
Fun time!! Pictures!
Halloween- Tinkerbells!
Pooped after getting casts!
Happy to be home!!
My three babes <3>
Amelia hugging her booked and 'sleeping' in Ana's bouncer :D
Until next time -
With love,
The Polks
Sunday, October 14, 2012
The new normal
- usual: conforming to the usual standard, type, or custom
- healthy: physically, mentally, and emotionally healthy
Firstly, I don't want anyone to be offended. My intend is solely to express my feelings. If you disagree, that is perfectly ok and I accept that. As I hope that you accept that mine differ from yours and we can still respect each other.
I have three daughters, Anabelle is our youngest. I have done the baby things that majority of people deal with, what you typically think comes along with having a new addition to the family.
With our older girls there were the middle of the night feedings, burping, spit up, introducing foods, tummy time (with ease), learning to crawl, holding their heads up (basically from birth..), doctor appointments for check ups and only very rarely between, playing with toys, etc etc.
With Anabelle there are continuous feeds, no need for burping because she has a bag that does it for her, and nothing is in her stomach anyways, spit up that is bile only and due to severe reflux, nothing orally because she can aspirate, a variety of medications and hospital visits, and very physically delayed. Oh, and about 20 doctor appointments a month.
I do not say any of this in a negative light. I mention these things because they are not normal. People continue to tell me that Anabelle is normal. Yes. There are things about her that are normal. She is a beautiful little girl, a wonderful addition to our family, I wouldn't trade her for any other baby, and her basic needs are normal as any other baby out there.
However, her feeding bags and list of medications are not normal.
Her formula being prescription formula is not normal.
Her going to therapy twice weekly is not normal.
Yada yada yada....
I hope everyone understand what my point is. I am a little tired so it makes sense in my head, and I just hope it makes sense as I type it.
So medical update! yay.
We have the first set of results back from the muscle biopsy. From the conversation with the Geneticist all positive. The basic: It's non progressive. Which is the answer we were looking for. In the consult, he said that sometimes conditions start out looking like just Arthrogryposis, then become degenerative. So finding out that she can only get better was a huge relief. He also said she has Fiber Type 1 & 2 disproportion. Also, he said something about active necrosis. I am confused by all of this. It seems a little oxymoron to me... And the nurse was trying to explain the blood results over the phone, and I was totally confused. I asked her to send me the report because it was all just too much to understand over the phone. Oh, and they are still doing tests on the muscle to see what else they can find since the first tests were somewhat inconclusive.
These are just a few paragraphs from the records, just to explain how easily I can get confused:
'The muscle biopsy shows necrosis in two adjacent fascicles with near complete necrosis of their fibers that are being replaced by an infiltrate of histiocytes at the periphery of the necrotic fascicles. That change, which essentially represents infarctions of the two muscle fascicles, is not present in the remaining fascicles of this biopsy. The necrotic fascicles are not associated with significant inflammatory infiltrates other than the histiocytes at the periphery of the fascicles, and the remaining fascicles of the biopsy remain free of inflammation There is no evidence of vascular thrombosis.....
Trichrome stain does not show the presence of "ragged red" fibers that could indicate a mitochondrial myopathy. Likewise, stains with SDH and COX (both mitochondrial specific enzymes) show no evidence of an abnormal pattern of staining. The fibers retain a normal amount of glycogen with PSA stains with and without diastase and normal amounts of lipids are detected with Oil-red-O stains. NADH stain does not show the presence of target or core fibers.'
So... with that said... if you understand all of this please let me know what the heck is means. I understand bits and pieces. But..
So with that and her appointment with the neurologist, we are moving forward with another MRI. I don't really know what the right path is, or if we are choosing the right steps, and all I can do is hope that we are. It will be about 3 hours and it will be on her brain and spine. So that means anesthesia for the 6th time since she was born. Not my favorite, but it's what we have to do.
I wouldn't trade any of this crazy chaos for the world. Of course there are times I want to just throw the white flag up. Then one of the girls or Kyle will do something to remind me it's all worth it. I am remind to appreciate every day given to us.
When we first found out there was something different with Anabelle, we were told she probably wasn't going to make it to birth. So here, 7 months and 14 days post birth, I can only be thankful for our journey, no matter where it leads. It might not be the normal path, or the path we expected, but it is ours and I wouldn't change it for anything.
With love,
The Polks
Friday, August 24, 2012
Busy lady
It's never a dull moment with Anabelle!
Last week her GI called, and said that if I am not comfortable with her pain level to bring her in, again. To the hospital because it was Friday after 5:00 PM, and that's how our life works. So she had been screaming all day, and then I get home from work and no change. Even with meds.
I took her in. We got her comfortable and admitted. I meet with the attending doc. I should mention we are VERY familiar with all of the doctors, and most nurses. Probably my least favorite thing. So he comes in and we discuss. He noted she was boarderline for an ear infection, but just not sure. So he wanted a complete work up. yay.... I explain how tough it is to get an IV and blood, and how we're getting a broviac cause of this very reason. I explain how last time they stuck her 14+ times, and still nada. He puts a cap on the times they can stick her, 3. Love it!!
So two nurses come in to do the IV. These are new nurses I have never seen, which is weird... I explain how hard it is. I explain how I'd like IV therapy or a NICU nurse.. They reassure me that they are pros and can get it. I tell them about the 3 sticks max....
Two sticks in, they tell me I'm right, and mama knows best. DUH!
NICU nurses come down. Another 4 sticks. They got an IV twice, but both turned. Meaning they no longer went into the vein, but rather just into her arms.. filling it with meds and fluids. Painful..
So no IV. Then lab comes. They did another few sticks and got enough only for 1 of the 4 tests. Great.
We saw her GI the next morning. Of course Anabelle was all smiles. Making me look insane. Then her GI remembered that in the hospital they blend the formula. Literally, just put the formula and water into a blender and wa-lah! She said that it takes out a lot of the gas.. still seems like she's crazy, but I guess it worked, for a few days. Anabelle came home on Sunday.
She did pretty ok during the week, only needing Tylenol w/ codeine once a day.. however, Thursday she started getting back to herself. And now, Friday, I called her GI again.
She also meet with surgery for a follow up. We told him what's been going on. He said that she is too small for a port, and she will get a broviac. But I guess there is such thing as a low profile broviac... (I can't remember if I have already said this..sorry!)
We meet with pulmonology this week. He said that he's happy with how she's progressed. Cancelled a med, added another one. Important news. He said that he doesn't want to repeat her swallow study for at least six months. And he said that'd be early. With that said, she will have a feeding tube, be it J or G, or GJ, for at least another year. In order to get her tube out she has to
1. Do a repeat swallow study and PASS, showing no aspirating or iffy like behavior.
2. Eat on her own without touching her tube AND thrive for another solid 6 months.
That was a little upsetting to hear, only because her GI ok'd a repeat swallow study for as soon as it could be approved.. but it's ok. What ever is best for Anabanana.
OHH and she is 11 lbs now :D Such a chunky monkey! Her hair has gotten so out of control too.. It reaches her eyes now! I put together some pictures and sent them to a doc for his opinion, so they have some funny words on the, but look how far she's come!
As far as family news::: I just got a promotion/new position at work! It will be awesome. I think I will really enjoy the work, and am super super super excited to start!!
Amelia and Allison are doing awesome. Amelia is really loving school. We have our first parent teacher conference next week! But there is this little girl who I can't stand. She tells Amelia that her shoes are not cute, or her hair or whatever.. then Amelia comes back and says she needs to wear different shoes, or she can't wear braids because this little girl said they are ugly.. UGH. I never thought I could be angry with a 4 year old!! Don't worry, I alerted her teacher to it and she has gotten better, I think..
I really don't think Ana and all of her needed attention has affected them to much. People always ask how they are doing with everything. I honestly haven't seen a huge drastic change in them. I feared jealous, outbursts, and just plain hell when we took Ana home from the NICU. But nada. I gotta say, our kids are pretty dang awesome.
.JPG)
Last week her GI called, and said that if I am not comfortable with her pain level to bring her in, again. To the hospital because it was Friday after 5:00 PM, and that's how our life works. So she had been screaming all day, and then I get home from work and no change. Even with meds.
I took her in. We got her comfortable and admitted. I meet with the attending doc. I should mention we are VERY familiar with all of the doctors, and most nurses. Probably my least favorite thing. So he comes in and we discuss. He noted she was boarderline for an ear infection, but just not sure. So he wanted a complete work up. yay.... I explain how tough it is to get an IV and blood, and how we're getting a broviac cause of this very reason. I explain how last time they stuck her 14+ times, and still nada. He puts a cap on the times they can stick her, 3. Love it!!
So two nurses come in to do the IV. These are new nurses I have never seen, which is weird... I explain how hard it is. I explain how I'd like IV therapy or a NICU nurse.. They reassure me that they are pros and can get it. I tell them about the 3 sticks max....
Two sticks in, they tell me I'm right, and mama knows best. DUH!
NICU nurses come down. Another 4 sticks. They got an IV twice, but both turned. Meaning they no longer went into the vein, but rather just into her arms.. filling it with meds and fluids. Painful..
So no IV. Then lab comes. They did another few sticks and got enough only for 1 of the 4 tests. Great.
We saw her GI the next morning. Of course Anabelle was all smiles. Making me look insane. Then her GI remembered that in the hospital they blend the formula. Literally, just put the formula and water into a blender and wa-lah! She said that it takes out a lot of the gas.. still seems like she's crazy, but I guess it worked, for a few days. Anabelle came home on Sunday.
She did pretty ok during the week, only needing Tylenol w/ codeine once a day.. however, Thursday she started getting back to herself. And now, Friday, I called her GI again.
She also meet with surgery for a follow up. We told him what's been going on. He said that she is too small for a port, and she will get a broviac. But I guess there is such thing as a low profile broviac... (I can't remember if I have already said this..sorry!)
We meet with pulmonology this week. He said that he's happy with how she's progressed. Cancelled a med, added another one. Important news. He said that he doesn't want to repeat her swallow study for at least six months. And he said that'd be early. With that said, she will have a feeding tube, be it J or G, or GJ, for at least another year. In order to get her tube out she has to
1. Do a repeat swallow study and PASS, showing no aspirating or iffy like behavior.
2. Eat on her own without touching her tube AND thrive for another solid 6 months.
That was a little upsetting to hear, only because her GI ok'd a repeat swallow study for as soon as it could be approved.. but it's ok. What ever is best for Anabanana.
OHH and she is 11 lbs now :D Such a chunky monkey! Her hair has gotten so out of control too.. It reaches her eyes now! I put together some pictures and sent them to a doc for his opinion, so they have some funny words on the, but look how far she's come!
See what I mean about the hair!
(yawning because she is bored with me...)
Her knees BENDING
Ana laying out :)
As far as family news::: I just got a promotion/new position at work! It will be awesome. I think I will really enjoy the work, and am super super super excited to start!!
Amelia and Allison are doing awesome. Amelia is really loving school. We have our first parent teacher conference next week! But there is this little girl who I can't stand. She tells Amelia that her shoes are not cute, or her hair or whatever.. then Amelia comes back and says she needs to wear different shoes, or she can't wear braids because this little girl said they are ugly.. UGH. I never thought I could be angry with a 4 year old!! Don't worry, I alerted her teacher to it and she has gotten better, I think..
I really don't think Ana and all of her needed attention has affected them to much. People always ask how they are doing with everything. I honestly haven't seen a huge drastic change in them. I feared jealous, outbursts, and just plain hell when we took Ana home from the NICU. But nada. I gotta say, our kids are pretty dang awesome.
.JPG)
With love,
The Polks
Wednesday, August 15, 2012
Testing and guessing
Anabelle has been a busy busy little lady.
Let's see. Medical stuff...
She's finally back in serial casting.. It's been a while since her on and off again hospital stays and trips. She has seen Endrocrinology, a Pulmonology team (a nurse, dietitian, social worker, etc.), her Rehabilitation coordinator, and GI.
Endo wants blood. Pulmonology wants follow ups. Rehab wants therapy. GI wants the most.
GI wanted an X-ray to check what, I don't know. But we did it this morning. I swear she might grow up and glow from all of this radiation... From my understanding; depending on what her GI sees in the x-ray...maybe not.. on Monday we will switch her back to a G-tube. Then observe. This will be done in the office. We will wait and watch her reflux. Unfortunately I have a feeling that it will be the same. She's still refluxing with a J-Tube, and that goes straight the the small intestine and was suppose to fix all of our worries. So if she still has severe reflux that affects her breathing horribly, again, then we will do a Nissen fundoplication. (gotta love Wikipedia!) So if we do that then we will combine the muscle biopsy and broviac, or a long PICC, like she had when she was in the NICU, and the Nissen.
Man oh man. My hope is that by 7... 7 1/2 months... things will slow down and we will be settled and things will be smooooth. I feel like we're getting there.. Just a little hiccup in the road.
Like I've said, I'm back at work. And I have been asked more than once how Anabelle is. Honestly it doesn't bother me. It's just though because do you really want to know, because we're just passing by each other in the hall, and I can't fit it all in in these short 5 seconds. And also, I don't want some people to think I'm complaining, or being sad. It's just her story. I don't want them to feel bad or pity her or our family. We are blessed. Honestly. I look at her and always just imagine how much worse it could be. And how far she's come, and what a little trooper and fighter she is.
Like today! She had such an awesome day! She was laughing (which it's been a while since she's laughed), and was all smiles. And she watches what we do, interacts with us. And most of all doesn't let all of this medical junk get in her way of being her, a happy, loving life baby girl. I have to say though, I think she loves her sisters most. Every time they talk and play with her she is ALL smiles! They love to help so so much. I am so thankful that our family has come together so well and we can all just see our precious Ana :)
Hopefully we will have more answers as to what the next few weeks look like ahead by tomorrow.
Oh, and the prayers, good thoughts, vibes, mojo, can we please keep it coming? I really feel it's been working wonders. Thanks <3 font="font">
With love,
The Polks
Let's see. Medical stuff...
She's finally back in serial casting.. It's been a while since her on and off again hospital stays and trips. She has seen Endrocrinology, a Pulmonology team (a nurse, dietitian, social worker, etc.), her Rehabilitation coordinator, and GI.
Endo wants blood. Pulmonology wants follow ups. Rehab wants therapy. GI wants the most.
GI wanted an X-ray to check what, I don't know. But we did it this morning. I swear she might grow up and glow from all of this radiation... From my understanding; depending on what her GI sees in the x-ray...maybe not.. on Monday we will switch her back to a G-tube. Then observe. This will be done in the office. We will wait and watch her reflux. Unfortunately I have a feeling that it will be the same. She's still refluxing with a J-Tube, and that goes straight the the small intestine and was suppose to fix all of our worries. So if she still has severe reflux that affects her breathing horribly, again, then we will do a Nissen fundoplication. (gotta love Wikipedia!) So if we do that then we will combine the muscle biopsy and broviac, or a long PICC, like she had when she was in the NICU, and the Nissen.
Man oh man. My hope is that by 7... 7 1/2 months... things will slow down and we will be settled and things will be smooooth. I feel like we're getting there.. Just a little hiccup in the road.
Like I've said, I'm back at work. And I have been asked more than once how Anabelle is. Honestly it doesn't bother me. It's just though because do you really want to know, because we're just passing by each other in the hall, and I can't fit it all in in these short 5 seconds. And also, I don't want some people to think I'm complaining, or being sad. It's just her story. I don't want them to feel bad or pity her or our family. We are blessed. Honestly. I look at her and always just imagine how much worse it could be. And how far she's come, and what a little trooper and fighter she is.
Like today! She had such an awesome day! She was laughing (which it's been a while since she's laughed), and was all smiles. And she watches what we do, interacts with us. And most of all doesn't let all of this medical junk get in her way of being her, a happy, loving life baby girl. I have to say though, I think she loves her sisters most. Every time they talk and play with her she is ALL smiles! They love to help so so much. I am so thankful that our family has come together so well and we can all just see our precious Ana :)
Hopefully we will have more answers as to what the next few weeks look like ahead by tomorrow.
Oh, and the prayers, good thoughts, vibes, mojo, can we please keep it coming? I really feel it's been working wonders. Thanks <3 font="font">
With love,
The Polks
Friday, June 29, 2012
122-79 = 43
I just counted all of Anabelle's doctor appointments, ER visits, and hospital stays thus far, and it drives me crazy how much this little girl has to be bothered by doctors. I could have missed some doctor appointments because sometimes I don't get them written down, but this is what I counted as of today:
41 doctor appointments
36 days in the hospital
+2 ER visits
79 doctor things in her short 122 days of life
This means we've only had 43 days of relaxing. Ugh.
I have to share this story to get it off my chest. This past weekend we all went out as a family to a fundraiser. I was sitting their holding Anabelle as she was sleeping. People were walking back and forth, not really paying to much attention to us. But this one group of people... It appeared to be a family; mom, dad, older kids. The dad made it obvious to stare. I think he was staring at the bag that had medical tubing running from it to my daughter. But still.. just ask! As he walked toward us, he STARED. As he passed us, he STARED. As he walked past us, he STARED. I looked up and when he noticed me, he smiled. I said hi, he said hi back. And continued to stare. Seriously!? I wish I was more experienced with handling these situations. I know I will get there over the years. But c'mon man!
I just find it unfair. And right now I'm having one of those moments where I question why. Don't worry, it'll pass in a few minutes :)
Last week was suppose to be easy. On Monday we only had casting, P/T and a follow up with her surgeon. (Whom I love by the way!) But in about 30 minutes we added a sleep study and follow up with her pulmonologist.
First, her casting. It went awesome! Except she has a small pressure sore, so this set of cast only lasted a few days. They use soft casts so we can take them off at home if she needs, which is nice because she needed them off yesterday! But her doctor is so happy with her progress. Even though it's slow. But her knees will barely go hyper extended anymore! We're going forward still until he feels she hits a wall.
41 doctor appointments
36 days in the hospital
+2 ER visits
79 doctor things in her short 122 days of life
This means we've only had 43 days of relaxing. Ugh.
I have to share this story to get it off my chest. This past weekend we all went out as a family to a fundraiser. I was sitting their holding Anabelle as she was sleeping. People were walking back and forth, not really paying to much attention to us. But this one group of people... It appeared to be a family; mom, dad, older kids. The dad made it obvious to stare. I think he was staring at the bag that had medical tubing running from it to my daughter. But still.. just ask! As he walked toward us, he STARED. As he passed us, he STARED. As he walked past us, he STARED. I looked up and when he noticed me, he smiled. I said hi, he said hi back. And continued to stare. Seriously!? I wish I was more experienced with handling these situations. I know I will get there over the years. But c'mon man!
I just find it unfair. And right now I'm having one of those moments where I question why. Don't worry, it'll pass in a few minutes :)
Last week was suppose to be easy. On Monday we only had casting, P/T and a follow up with her surgeon. (Whom I love by the way!) But in about 30 minutes we added a sleep study and follow up with her pulmonologist.
First, her casting. It went awesome! Except she has a small pressure sore, so this set of cast only lasted a few days. They use soft casts so we can take them off at home if she needs, which is nice because she needed them off yesterday! But her doctor is so happy with her progress. Even though it's slow. But her knees will barely go hyper extended anymore! We're going forward still until he feels she hits a wall.
Just look how far she's come! From not even being able to take a picture of her legs separate to...
This!!
Progress! I asked the doc if he thinks she'll need braces (AFO's or KAFO's) to walk, and he said probably. Just because the muscle there isn't what she really needs to walk. But I'll take it! Now, he's not saying he's 100% sure he thinks she'll walk, but he said if she does. Now if he says no, we're getting a second opinion, of course.
Then we had P/T. She laughed for her p/t lady! She's only laughed a little for me, but this was a hardy full on laugh. Stinker butt. Overall though, she hates p/t.
Then the sleep study. Mind you this was all on Tuesday. Casts at 8, P/T at 3:30, then the sleep study from 7:30PM-6 AM. FUN day.
Wednesday we met with Dr. Chipps, her pulmonologist. He said that her sleep study was improving. Not good, not great, but better then the first two. Good news was she doesn't have to be on oxygen anymore, only when she needs it, and we don't have to see him again for 2 months! YAY!!!! I wanted to hug him! But he's not really a people person and I think he would have told us to find a new pulmonologist...
These past few days have been hard though. She's been really crabby. Little princess doesn't like to be put down. She likes to sleep chest to chest. Which makes sleeping for us muy difficult. I usually sleep on the couch with her so that she isn't crying all night. With our first two we'd let them try to sooth themselves. But Ana can't really do that. She has trouble keeping her binki in by herself, and we (I) always think it's something bad when she cries. 'Are her casts bugging her?' 'Is her reflux bad right now?' 'Does her tube hurt her?' 'Does she have gas?' And on and on and on. It's a guessing game.
But then she makes up for it. She'll relax and calm down, and give us the biggest smile ever! Underneath it all, she is a happy baby. At least she wants to be. She love talking to her sisters! She'll talk their ears off! And I think they love her too!
OH! And Amelia started preschool last week!
I know, my kids are cute :)
This weekend Kyle and I get a night away for my birthday :):):):)
Thanks Leah!!!!
Yes! A family member is crazy enough to take on all three of our kids overnight, plus their own! And we get to escape to San Francisco for the night, and go to Alcatraz. I am nervous, terrified, thrilled, scared, excited, panicked, and more all at the same time. I know we have enough equipment to make sure Ana stays safe and sound. It's just scary. And I know we're leaving her in capable hands. I don't doubt that. I just know it can be rough when Kyle and I are home, and we have just our own kids. Anabelle requires a lot of attention...
But we love her. So so much <3
With love,
The Polks
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