Ear infection and throat infection for Serena, start of an ear infection for Edwin. No wonder they were so miserable! Antibiotics and steroids on board. Hopefully they will be feeling better soon!
In other news...
Rodriguez back in ring Jan. 17
Worcester’s unbeaten middleweight prospect, Edwin “La Bomba” Rodriguez (8-0-0, 5 knockouts), returns to the ring for the first time in almost five months when he takes on 43-year-old Detroit journeyman Raynard Darden (10-19-1, 4 KOs) on Saturday, Jan. 17, at the Beau Rivage Resort & Casino in Biloxi, Miss. The fight, the first 8-rounder of Rodriguez’s career, will be on the non-televised portion of an HBO “Boxing After Dark” card headlined by the welterweight battle between undefeated Andre Berto (23-0-0, 19) and former champion Luis Collazo (29-3-0, 14). Rodriguez last fought on Aug. 22, pitching a 6-round shutout against Marcus Upshaw, who last month battled James McGirt Jr. (19-1-1, 9) to a 10-round majority draw.
Happy New Year everyone!!!
Wednesday, December 31, 2008
Tuesday, December 30, 2008
Ugghhhh...sick again
The kids are sick again. Serena is worse. Her horrible cough is back and she is pale looking. Edwin's "looking" better, but his respirations are increased and needs to O2 while asleep. Both areon nebs and I am considering calling tomorrow to start them on Pregnisone.
I don't know how long it's going to take before their bodies can handle a cold, but the end seems no where in sight. It is extremely stressful when they are sick. I am constantly worried they will stop breathing while asleep. Thank God for monitors. I wish there was more I could do to help them feel better. They have scarred lungs, and I imagine it's going to take time before they are able to get through a cold without O2 and steroids. I wish they felt better...
In other news, I took EJ to an augmentative speech clinic through Boston Children's today. Since I have zero luck with having a consistent ST for him through EI, I took it upon myself to find someone to help him. Thanks to my wonderful friend Kelly, Tyler's Mom, I got a name of a ST through this clinic.
Even though he had a slight cough and the sniffles, Edwin did well. He demonstrated his vast array of sounds while babbling, and even attempted to say "horse" (sss), "quack" (kuh), "pig" (puh) all while pointing at the pictures. I was so proud. He also mimicked "baaa" for the noise a sheep makes.
He did well with pointing to objects that he wanted to play with. And was able to press button to hear music. He signed "more" when he wanted more animals. And was able to press the verbal recordings with pictures of either crackers or juice depending on which he wanted during his snack time. He even said "sss" for juice.
All in all it was clear that Edwin can communicate his needs through picture and sound, even if he can't verbalize all he wants now. I mentioned apraxia and the ST said it is possible, but too early to tell, especially since he is not consistently using words at this time. It's almost like he hears certain syllables and says those, but can't form the word. This could be a sign of difficulty with motor planning, which could lead to a diagnosis at some time, or it could be a delay.
On a positive note, the ST felt it was great that he makes so many noises, and copies noises reciprocally with us. She said it is promising that he knows what he wants and what he doesn't and makes it clear by pointing or pushing away.
So the plan for now is to label and create picture books and use them consistently. We have done this some, but not in a communicative way as much as we should. We are also going to continue signing, which Edwin is catching onto. We are really working on the sign for "help" this week.
I really don't know what the future holds for Edwin's speech. I long to hear him ask for me or say things like Serena does, and deep down and I think he will with time. But if he doesn't, we are going to make it as easy as possible for him to communicate his needs and desires to us. We will continue with the augmentative clinic...we return in 6 months, or earlier if he seems ready for more advanced equipment (like computer games) as opposed to the pictures and recordings.
I will try and get some video of him attempting to copy words we say. He concentrates so hard, it's really sweet. He gets super happy when we cheer for him when he makes a letter sound, or attempts a word.
So please send healing thoughts this way. I am so afraid of them getting sick after our week in the PICU at the beginning of this month. And we weren't even exposed to any sick people. I hope this isn't a foreshadow of what;s to come this winter....
I don't know how long it's going to take before their bodies can handle a cold, but the end seems no where in sight. It is extremely stressful when they are sick. I am constantly worried they will stop breathing while asleep. Thank God for monitors. I wish there was more I could do to help them feel better. They have scarred lungs, and I imagine it's going to take time before they are able to get through a cold without O2 and steroids. I wish they felt better...
In other news, I took EJ to an augmentative speech clinic through Boston Children's today. Since I have zero luck with having a consistent ST for him through EI, I took it upon myself to find someone to help him. Thanks to my wonderful friend Kelly, Tyler's Mom, I got a name of a ST through this clinic.
Even though he had a slight cough and the sniffles, Edwin did well. He demonstrated his vast array of sounds while babbling, and even attempted to say "horse" (sss), "quack" (kuh), "pig" (puh) all while pointing at the pictures. I was so proud. He also mimicked "baaa" for the noise a sheep makes.
He did well with pointing to objects that he wanted to play with. And was able to press button to hear music. He signed "more" when he wanted more animals. And was able to press the verbal recordings with pictures of either crackers or juice depending on which he wanted during his snack time. He even said "sss" for juice.
All in all it was clear that Edwin can communicate his needs through picture and sound, even if he can't verbalize all he wants now. I mentioned apraxia and the ST said it is possible, but too early to tell, especially since he is not consistently using words at this time. It's almost like he hears certain syllables and says those, but can't form the word. This could be a sign of difficulty with motor planning, which could lead to a diagnosis at some time, or it could be a delay.
On a positive note, the ST felt it was great that he makes so many noises, and copies noises reciprocally with us. She said it is promising that he knows what he wants and what he doesn't and makes it clear by pointing or pushing away.
So the plan for now is to label and create picture books and use them consistently. We have done this some, but not in a communicative way as much as we should. We are also going to continue signing, which Edwin is catching onto. We are really working on the sign for "help" this week.
I really don't know what the future holds for Edwin's speech. I long to hear him ask for me or say things like Serena does, and deep down and I think he will with time. But if he doesn't, we are going to make it as easy as possible for him to communicate his needs and desires to us. We will continue with the augmentative clinic...we return in 6 months, or earlier if he seems ready for more advanced equipment (like computer games) as opposed to the pictures and recordings.
I will try and get some video of him attempting to copy words we say. He concentrates so hard, it's really sweet. He gets super happy when we cheer for him when he makes a letter sound, or attempts a word.
So please send healing thoughts this way. I am so afraid of them getting sick after our week in the PICU at the beginning of this month. And we weren't even exposed to any sick people. I hope this isn't a foreshadow of what;s to come this winter....
Saturday, December 27, 2008
Friday, December 26, 2008
Merry Christmas everyone!!!
It's been too long since I updated!
Serena is 100% back to her old self...active, happy, and social. She is beginning to put 2 and 3 words together and tries to sing Twinkle, Twinkle and count. She says...1, 2, 9...it's funny.
Edwin is also doing well...walking and STEERING his walker and more independent standing...also knee walking! He has said a couple of words...Elmo, and "choo choo" for his Thomas trains. We have a speech eval Tuesday.
We had a wonderful Christmas. LOTS of toys for 2 very special two year olds!
More updates to come. Enjoy the pictures!
It's been too long since I updated!
Serena is 100% back to her old self...active, happy, and social. She is beginning to put 2 and 3 words together and tries to sing Twinkle, Twinkle and count. She says...1, 2, 9...it's funny.
Edwin is also doing well...walking and STEERING his walker and more independent standing...also knee walking! He has said a couple of words...Elmo, and "choo choo" for his Thomas trains. We have a speech eval Tuesday.
We had a wonderful Christmas. LOTS of toys for 2 very special two year olds!
More updates to come. Enjoy the pictures!
Thursday, December 11, 2008
Because pasta makes everyone feel better!
Thanks Randi for your wonderful meal. It really helped us out...the kids loved it and I didn't have to cook or go shopping!!!
Sunday, December 7, 2008
We're HOME!!!
Hi everyone,
Sorry I didn't update yesterday. Serena began feeling better and slept less which made made my computer time non existent. Additionally, Edwin didn't train yesterday so I had some company when she did nap.
So they did an aggressive wean yesterday and Serena made it off Vapo Therm and onto a nasal canula at 2 liters by 8pm. They weaned her overnight to a liter, and she kept her sats up all night. Because we are comfortable with her, oxygen, monitors, albuterol, oral steroids, and Flovent,our pulmonologist advocated for us going home. Thank goodness he was on this weekend. He is the BEST!!!!
So we were home today by lunch!
We are keeping Serena on 1 liter O2 for 24 hours. Nebs every 4 hours, back on Flovent, 44mgs 2 puffs BID, and Pregnisone for several days (she's on a taper.)
She had a lot of difficulty walking...very weak and wobbly, but has improved in the past hour. She had a tubby with her brother and ate pretty well. When she napped she needed 2 3 liters, but I was able to move her down to 2 liters after 15 minutes. We'll see how she does tonight.
So we are on the mend. Thank you so much for all your comments, support, and healing thoughts.
Let's pray winter goes better and we stay far from the PICU!!!!!
I'll have pictures tomorrow!
Sorry I didn't update yesterday. Serena began feeling better and slept less which made made my computer time non existent. Additionally, Edwin didn't train yesterday so I had some company when she did nap.
So they did an aggressive wean yesterday and Serena made it off Vapo Therm and onto a nasal canula at 2 liters by 8pm. They weaned her overnight to a liter, and she kept her sats up all night. Because we are comfortable with her, oxygen, monitors, albuterol, oral steroids, and Flovent,our pulmonologist advocated for us going home. Thank goodness he was on this weekend. He is the BEST!!!!
So we were home today by lunch!
We are keeping Serena on 1 liter O2 for 24 hours. Nebs every 4 hours, back on Flovent, 44mgs 2 puffs BID, and Pregnisone for several days (she's on a taper.)
She had a lot of difficulty walking...very weak and wobbly, but has improved in the past hour. She had a tubby with her brother and ate pretty well. When she napped she needed 2 3 liters, but I was able to move her down to 2 liters after 15 minutes. We'll see how she does tonight.
So we are on the mend. Thank you so much for all your comments, support, and healing thoughts.
Let's pray winter goes better and we stay far from the PICU!!!!!
I'll have pictures tomorrow!
Friday, December 5, 2008
Second update Day 5
We have internet in our room here in he PICU, which is how I am updating. It's a savior when Serena naps!
We have better news to report. Although, Serena was turned up to 100% FiO2 last night to keep her sats up, they have decided that she does sound better and they are going to be a little aggressive in weaning her while she is awake during the day. She is down to 7 liters and down to 70%, (even though she was down to 60 yesterday, this is still good.) They also lowerd the dose of her albuterol, even though she still gets the treatment every hour.
I just talked to the nurses and respiratory therapists, they feel that the Drs are being a little too conservative and that the focus should be to turn down her flow and not the FiO2 because she will be at 100% O2 while on a nasal canula anyway. They also don't feel she really needs these nebs every hour because she is not wheezing. Of course her lungs are junky, but that is from the virus she has, and nebs aren't going to make that "go away."
She is off precautions since all her swabs came back normal. So we don't know which virus she has, but it not RSV, the flu, or the other viruses they check for.
Who knows why she got this sick, but at least she seems to be improving! Just wanted you to know because it's better news than what we thought this am with her settings turned all the way back up!
We have better news to report. Although, Serena was turned up to 100% FiO2 last night to keep her sats up, they have decided that she does sound better and they are going to be a little aggressive in weaning her while she is awake during the day. She is down to 7 liters and down to 70%, (even though she was down to 60 yesterday, this is still good.) They also lowerd the dose of her albuterol, even though she still gets the treatment every hour.
I just talked to the nurses and respiratory therapists, they feel that the Drs are being a little too conservative and that the focus should be to turn down her flow and not the FiO2 because she will be at 100% O2 while on a nasal canula anyway. They also don't feel she really needs these nebs every hour because she is not wheezing. Of course her lungs are junky, but that is from the virus she has, and nebs aren't going to make that "go away."
She is off precautions since all her swabs came back normal. So we don't know which virus she has, but it not RSV, the flu, or the other viruses they check for.
Who knows why she got this sick, but at least she seems to be improving! Just wanted you to know because it's better news than what we thought this am with her settings turned all the way back up!
Update PICU day 5
Well, yet again we took steps backward. Serena again needed more O2 throughout the night. This is so typical, and yet it makes the Drs hestitant to wean her during the day, so it is a perpetual cycle of her seeming to look better, doing worse at night, and we are plateauing again. At night, your breathing gets more shallow. You take smaller breaths and your lower lungs don't expand and contract as much, moving less air through. Normally, this isn't a problem, however, with a child like Serena, whose airways are already compromised, not expanding the lower lungs makes a situation where she doesn't move enough oxygen and she needs more supplimental oxygen to keep her sats up.
I talked to the nurse this morning and she said she still sounds really coarse. She said, "she was so sick by the time she got up here. I really thought she was going to code." That's exactly what I thought, and it is so scary to think how close Serena came to needing to be revived, and put on life support.
The part that frustrates me is we came into the ER at 3pm. She was not brought up to the Pedi floor (not even ICU) until 11pm. Then she stayed there for an hour, when they realized she needed much more support, and brought her to the PICU, and within 20 minutes she gave out, and stopped breathing...which was when she needed to be bagged and treated aggressively with medications and breathing treatments.
The question is...why did they keep her in the ER so long without much support, allowing her to "tire out?" I guess they didn't see how sick she was there, because she seemed pretty okay with only 1 liter of regular O2 and breathing treatments every 2-3hours. They really thought she was just coming to the Pedi floor for observation throughout the night, but instead here we are day 5 of the Intensive Care Unit, and she is barely making any consistant forward strides toward getting better. The nurse said 2 weeks in the PICU is typical for kids as sick as Serena. :(
I can't believe she got as sick as she did, and so quickly. We are always on top of the kid's health, and she just turned for the worse on Monday, and even looked "better" than she was based on what I wrote above about how long they kept her in the ER and didn't have her admitted upstairs to the Unit. It was like the virus was hiding out, waiting for the moment to attack, and now she is so tight and coarse in her lungs, it is going to take a long time to recover. We still don't know what cold virus this is, as all the results are still negative. It's just a nasty cold that took hold of her already sick and scarred lungs.
So we're still here. Not much has changed. Same amount of O2, breathing treatments every hour. Not much improvment, although she is looking much better. She looked like death on Monday and Tuesday according to the nurse...yeah no sh*t, she almost coded in my arms.
Get better baby girl.
I talked to the nurse this morning and she said she still sounds really coarse. She said, "she was so sick by the time she got up here. I really thought she was going to code." That's exactly what I thought, and it is so scary to think how close Serena came to needing to be revived, and put on life support.
The part that frustrates me is we came into the ER at 3pm. She was not brought up to the Pedi floor (not even ICU) until 11pm. Then she stayed there for an hour, when they realized she needed much more support, and brought her to the PICU, and within 20 minutes she gave out, and stopped breathing...which was when she needed to be bagged and treated aggressively with medications and breathing treatments.
The question is...why did they keep her in the ER so long without much support, allowing her to "tire out?" I guess they didn't see how sick she was there, because she seemed pretty okay with only 1 liter of regular O2 and breathing treatments every 2-3hours. They really thought she was just coming to the Pedi floor for observation throughout the night, but instead here we are day 5 of the Intensive Care Unit, and she is barely making any consistant forward strides toward getting better. The nurse said 2 weeks in the PICU is typical for kids as sick as Serena. :(
I can't believe she got as sick as she did, and so quickly. We are always on top of the kid's health, and she just turned for the worse on Monday, and even looked "better" than she was based on what I wrote above about how long they kept her in the ER and didn't have her admitted upstairs to the Unit. It was like the virus was hiding out, waiting for the moment to attack, and now she is so tight and coarse in her lungs, it is going to take a long time to recover. We still don't know what cold virus this is, as all the results are still negative. It's just a nasty cold that took hold of her already sick and scarred lungs.
So we're still here. Not much has changed. Same amount of O2, breathing treatments every hour. Not much improvment, although she is looking much better. She looked like death on Monday and Tuesday according to the nurse...yeah no sh*t, she almost coded in my arms.
Get better baby girl.
Update PICU day 5
Well, yet again we took steps backward. Serena again needed more O2 throughout the night. This is so typical, and yet it makes the Drs hestitant to wean her during the day, so it is a perpetual cycle of her seeming to look better, doing worse at night, and we are plateauing again. At night, your breathing gets more shallow. You take smaller breaths and your lower lungs don't expand and contract as much, moving less air through. Normally, this isn't a problem, however, with a child like Serena, whose airways are already compromised, not expanding the lower lungs makes a situation where she doesn't move enough oxygen and she needs more supplimental oxygen to keep her sats up.
I talked to the nurse this morning and she said she still sounds really coarse. She said, "she was so sick by the time she got up here. I really thought she was going to code." That's exactly what I thought, and it is so scary to think how close Serena came to needing to be revived, and put on life support.
The part that frustrates me is we came into the ER at 3pm. She was not brought up to the Pedi floor (not even ICU) until 11pm. Then she stayed there for an hour, when they realized she needed much more support, and brought her to the PICU, and within 20 minutes she gave out, and stopped breathing...which was when she needed to be bagged and treated aggressively with medications and breathing treatments.
The question is...why did they keep her in the ER so long without much support, allowing her to "tire out?" I guess they didn't see how sick she was there, because she seemed pretty okay with only 1 liter of regular O2 and breathing treatments every 2-3hours. They really thought she was just coming to the Pedi floor for observation throughout the night, but instead here we are day 5 of the Intensive Care Unit, and she is barely making any consistant forward strides toward getting better. The nurse said 2 weeks in the PICU is typical for kids as sick as Serena. :(
I can't believe she got as sick as she did, and so quickly. We are always on top of the kid's health, and she just turned for the worse on Monday, and even looked "better" than she was based on what I wrote above about how long they kept her in the ER and didn't have her admitted upstairs to the Unit. It was like the virus was hiding out, waiting for the moment to attack, and now she is so tight and coarse in her lungs, it is going to take a long time to recover. We still don't know what cold virus this is, as all the results are still negative. It's just a nasty cold that took hold of her already sick and scarred lungs.
So we're still here. Not much has changed. Same amount of O2, breathing treatments every hour. Not much improvment, although she is looking much better. She looked like death on Monday and Tuesday according to the nurse...yeah no kidding, she almost coded in my arms.
Get better baby girl.
I talked to the nurse this morning and she said she still sounds really coarse. She said, "she was so sick by the time she got up here. I really thought she was going to code." That's exactly what I thought, and it is so scary to think how close Serena came to needing to be revived, and put on life support.
The part that frustrates me is we came into the ER at 3pm. She was not brought up to the Pedi floor (not even ICU) until 11pm. Then she stayed there for an hour, when they realized she needed much more support, and brought her to the PICU, and within 20 minutes she gave out, and stopped breathing...which was when she needed to be bagged and treated aggressively with medications and breathing treatments.
The question is...why did they keep her in the ER so long without much support, allowing her to "tire out?" I guess they didn't see how sick she was there, because she seemed pretty okay with only 1 liter of regular O2 and breathing treatments every 2-3hours. They really thought she was just coming to the Pedi floor for observation throughout the night, but instead here we are day 5 of the Intensive Care Unit, and she is barely making any consistant forward strides toward getting better. The nurse said 2 weeks in the PICU is typical for kids as sick as Serena. :(
I can't believe she got as sick as she did, and so quickly. We are always on top of the kid's health, and she just turned for the worse on Monday, and even looked "better" than she was based on what I wrote above about how long they kept her in the ER and didn't have her admitted upstairs to the Unit. It was like the virus was hiding out, waiting for the moment to attack, and now she is so tight and coarse in her lungs, it is going to take a long time to recover. We still don't know what cold virus this is, as all the results are still negative. It's just a nasty cold that took hold of her already sick and scarred lungs.
So we're still here. Not much has changed. Same amount of O2, breathing treatments every hour. Not much improvment, although she is looking much better. She looked like death on Monday and Tuesday according to the nurse...yeah no kidding, she almost coded in my arms.
Get better baby girl.
Thursday, December 4, 2008
Update...PICU day 4
Serena is feeling better today. Above are pictures of her sleeping...note the blood on her sheets...IVs. She lost her hand one tonight, and I said I'd agree to one attempt and if it didn't go then I insisted on giving her her steroid orally. It's the only thing she needs the IV for as she is taking fluids by mouth. Sure enough the attempt failed and we they held their end of the bargain and we gave her her steroid orally. She didn't lik it, but I'm sure would have chosen that over another stab. She doesn't have many vein options given all she has been through in her short life.
She had an appetite today which was good and was playful and talkative. She is still on 8 liters of pressurized O2, and is down to 60% FiO2, but there is still a lLONG way to go. They are still insisting on every hour neb treatments. Her chest x-ray showed lung (airway) collapse on the upper right side. We repositioned her and I gave her some chest PT. She sounded better this evening. So we continue to wait it out and hope for successful weans, albeit very conservative ones. We will be here for a few more days....
The swabs are all still negative, and could be final tomorrow because it will be day 5. We are not sure what virus this is, but it is nasty. We also figured out that Serena may be taking on signs of a true asthmatic (not just a chronic lung disease kiddo.) While in Maine we did have the fireplace going on Thanksgiving. This could have aggravated her, causing her reactive airway to "react" more as the virus took hold. Although she never coughed or showed signs of distress. But we are being cautious and the plan will be to go back to Flovent puffs daily to help her airway to not react and clamp down as it did with this virus.
There will be no more playgroups, and no Y baby room this winter season. We will have to balance her social interaction with keeping her safe from germs. It's going to be a challenge, because she loves to be out and about but this cannot happen again. It's driving us all crazy.
I miss Edwin incredibly, but don't feel right being away from Serena, as she has developed an intense fear of all medical staff and calls for me every time they come near. It's terrible to see her so frightened...wondering if they are going to inflictg pain on her little body.
We will see what tomorrow brings...
Ranting while in the PICU
Prematurity, especially extreme prematurity sucks. It's such a compound issue, it might as well be a diagnosis in and of itself. Not much is "normal" when you have a baby half way into your pregnancy; and the lasting impacts are *almost* given. You end up having a child/ren who have complex, scary, and critical health issues...these usually take the form of respiratory illness, GI issues, growth and feeding issues, and neurological issues including seizures. Our major issue is respiratory. I should shut up and be thankful this is our only *real* medical issue. There is also the assault on their eye sight and hearing. Both kids will probably end up needing glasses...but again I should be thankful here as well. There are also the physical wounds, which seem so unimportant in the grand scheme of things, but it actually SUCKS that your poor child has scars ALL over their bodies. It sucks even worse that your child/ren had to endure all the pain which resulted in all these scars. It also sucks that prematurity is a direct assault on the brain, altering anything *normal* about development. It sucks that kiddos struggle to sit up, to crawl, to stand, to walk, to hold a pencil, to build a tower of blocks, to talk, to understand, to tolerate certain stimuli, to handle certain textures...and there are kids who not only struggle to do these things, but never will. That really sucks.
It sucks that more people don't understand prematurity, so they don't know why our kids are in the hospital, can't go to play groups, need to wear tubing up their noses, or get mist sprayed in their faces, or end up in the ICU with a cold or asthmatic symptoms. It sucks that people don't understand that giving your son a push toy isn't going to magically make him able to walk, or that repeating a word over and over will not enable him to say it at 2 years old.
Most people probably assume that I'm strong, don't feel sorry for myself, and hold it together, well mosty they are corect. But when I let myself "go there" I feel weak, I do feel sorry for myself, and I wonder how I hold it together. I feel my kids really got cheated...we all did. Prematurity is so unfair...the pain that accompanies it...physical and emotional is really damn unfair.
I know this is a rant, but of course I'm feeling down...watching Serena take two steps back again (O2 back up for her to maintain sats while asleep...unable to make it 2 hours without a treatment.) But she is not currently at risk for being intubated, and for this I am of course relieved and grateful.
It's crazy, you feel guilty complaining or expressing feelings related to premturity because you know you should be grateful for your child's survival...that so many others do not have their child in their arms, but instead must carry them in their hearts. You know you should be grateful for what your child CAN do, because you are aware of how much risk they were at to do less. And you feel guilty saying anything because you know children who struggle more than your own. It's a perpetual cycle of trying to acknowledge your feelings and feeling validated that you have a right to be angry and upset about what is happening to your children, and at the same time balancing this with feeling grateful for their lives. It's a mix of emotions that can sometimes overwhelm you. It's par for the course for us...I hope one day there won't be anymore *new* "us."
It sucks that more people don't understand prematurity, so they don't know why our kids are in the hospital, can't go to play groups, need to wear tubing up their noses, or get mist sprayed in their faces, or end up in the ICU with a cold or asthmatic symptoms. It sucks that people don't understand that giving your son a push toy isn't going to magically make him able to walk, or that repeating a word over and over will not enable him to say it at 2 years old.
Most people probably assume that I'm strong, don't feel sorry for myself, and hold it together, well mosty they are corect. But when I let myself "go there" I feel weak, I do feel sorry for myself, and I wonder how I hold it together. I feel my kids really got cheated...we all did. Prematurity is so unfair...the pain that accompanies it...physical and emotional is really damn unfair.
I know this is a rant, but of course I'm feeling down...watching Serena take two steps back again (O2 back up for her to maintain sats while asleep...unable to make it 2 hours without a treatment.) But she is not currently at risk for being intubated, and for this I am of course relieved and grateful.
It's crazy, you feel guilty complaining or expressing feelings related to premturity because you know you should be grateful for your child's survival...that so many others do not have their child in their arms, but instead must carry them in their hearts. You know you should be grateful for what your child CAN do, because you are aware of how much risk they were at to do less. And you feel guilty saying anything because you know children who struggle more than your own. It's a perpetual cycle of trying to acknowledge your feelings and feeling validated that you have a right to be angry and upset about what is happening to your children, and at the same time balancing this with feeling grateful for their lives. It's a mix of emotions that can sometimes overwhelm you. It's par for the course for us...I hope one day there won't be anymore *new* "us."
Wednesday, December 3, 2008
Serena update #2
Thank you all for your emails, messages, and texts. I appreciate your concern and it is comforting to know people are pulling for Serena. Serena has her ups and downs, but she is on an upswing right now. They put a bed in our room at my request (as opposed to a crib) and allowed Serena to sleep with me last night. She got much more sleep and is still sleeping now at 9:45am. She was weaned down on the concentration of her oxygen via Vapo-Therm and is now at 8 liters at 70%, which is still a significant amount of support. It's a LONG way from even getting her onto oxygen via a nasal cannula.
On the plus side, they allowed her to go from continuous albuterol treatments (can you imagine how difficult this was to keep a breathing treatment on her 24/7!?!?!) to every hour, which is much better. If she continues to improve they will space them out to 2 hours, etc. But I don't want to get my hopes up because they tried the one hour spacer yesterday afternoon and they felt she was working too hard and put her back to continuous. 1 step forward, 2 steps back...the dance that those of us with medically fragile children go through.
Now another concern is her elevated blood sugar. This could be for a number of reasons, including her steroids, but they are going to finger stick her and check things out. She also lost her 3rd IV last night!!!!! This next attempt will be her 6th stick since Monday...I'm so upset about it and refuse to hold her down this time. She goes off color every time and it breaks my heart to see her in so much pain.
They still don't know which virus this is, RSV and the other take 5-7 days to grow, so we won't have a definitive negative until then.
So we'll definitely not be going home today, or probably even tomorrow. Perhaps Sat or Sunday if we're lucky.
Please continue to pray and keep Serena in your thoughts. We all can't wait to see her feeling better and back to her happy, playful, energetic self! And she and I really miss little Edwin, aka "N-E" as she calls him.
On the plus side, they allowed her to go from continuous albuterol treatments (can you imagine how difficult this was to keep a breathing treatment on her 24/7!?!?!) to every hour, which is much better. If she continues to improve they will space them out to 2 hours, etc. But I don't want to get my hopes up because they tried the one hour spacer yesterday afternoon and they felt she was working too hard and put her back to continuous. 1 step forward, 2 steps back...the dance that those of us with medically fragile children go through.
Now another concern is her elevated blood sugar. This could be for a number of reasons, including her steroids, but they are going to finger stick her and check things out. She also lost her 3rd IV last night!!!!! This next attempt will be her 6th stick since Monday...I'm so upset about it and refuse to hold her down this time. She goes off color every time and it breaks my heart to see her in so much pain.
They still don't know which virus this is, RSV and the other take 5-7 days to grow, so we won't have a definitive negative until then.
So we'll definitely not be going home today, or probably even tomorrow. Perhaps Sat or Sunday if we're lucky.
Please continue to pray and keep Serena in your thoughts. We all can't wait to see her feeling better and back to her happy, playful, energetic self! And she and I really miss little Edwin, aka "N-E" as she calls him.
Tuesday, December 2, 2008
PICU Day 2
I'm a little too tired and emotionally drained to be blogging, but here it goes. As you know Edwin had a cold last week. We went to Maine and all was well until Sat. Serena began her tell-tale cough that means she is sick and will need O2. Sure enough she needed O2 to sleep Sat night and on the ride home from Maine Sunday while napping. She got worse Sunday night and by Monday she was really drained. Daddy stayed home and gave her treatments and had her rest. I went to work and called throughout the morning. By 2pm my mom came to relieve Edwin so he could train. 30 minutes after being there, Serena crashed. I work 1 minute from home and my mom called me to come home. One look at her and off to the ER we went. She was really tight and retracting in the car and we were brought right into the Pedi ER.
Long story short she got better for a bit then crashed again and moved from the step down PICU floor to the ICU. She had a terrible episode about 20 minutes into her admission to the ICU. SHe was so tired, scared, and stressed and was crying and trying to fight off the nurses who were trying to get her IV and set her up to the monitors. She was screaming and turned the darkest shade of blue I'd ever seen while I was holding her and the nurses where trying to get her settled. She went limp and her hands, face and lips were very blue. Her sats were in the 30s and they began bagging her, giving her blow by, (she was already on Vapo Therm), gave her breathing treatments, and gave her IV steroids. They ordered her IV terbuteline which mandated an EKG. It was a nightmare. I was so scared, and really thought for a second I might lose her. I thought she would be intubated, but thankfully with continuous breathing trreatments, 8 liters of vapo therm at 100% O2, IV drugs, etc she stabilized.
It is not RSV, and nop pneumonia. It came on quickly and hit incredibly hard.
So here we are. No real weaning yet. Still on continuous albuterol and vapo therm. We will be here for awhile. Please keep her in your thoughts and prayers.
Thank you.
Long story short she got better for a bit then crashed again and moved from the step down PICU floor to the ICU. She had a terrible episode about 20 minutes into her admission to the ICU. SHe was so tired, scared, and stressed and was crying and trying to fight off the nurses who were trying to get her IV and set her up to the monitors. She was screaming and turned the darkest shade of blue I'd ever seen while I was holding her and the nurses where trying to get her settled. She went limp and her hands, face and lips were very blue. Her sats were in the 30s and they began bagging her, giving her blow by, (she was already on Vapo Therm), gave her breathing treatments, and gave her IV steroids. They ordered her IV terbuteline which mandated an EKG. It was a nightmare. I was so scared, and really thought for a second I might lose her. I thought she would be intubated, but thankfully with continuous breathing trreatments, 8 liters of vapo therm at 100% O2, IV drugs, etc she stabilized.
It is not RSV, and nop pneumonia. It came on quickly and hit incredibly hard.
So here we are. No real weaning yet. Still on continuous albuterol and vapo therm. We will be here for awhile. Please keep her in your thoughts and prayers.
Thank you.
Monday, November 24, 2008
Not saying goodbye to O2, or nurses either...***Update***
Soooo...after my ranting post last week, Edwin proceded to get sick quickly and has barely slept or eaten since Friday night and is needing between 1/2 liter to 1 1/2 liters of O2 while asleep. We started on the pregnisone yesterday and have a visit with pulmonary this afternoon to make sure it is not pneumonia AGAIN (he's had it twice.) Anyway, we won't be losing nursing this Dec as I had worried. I'm sure with this it is evidence that any cold will send them back on O2 while asleep (and a large amount), plus breathing treatments every few hours, and a lot of stress, lack of sleep, and debates about going to the ER.
I shouldn't have complained too much. I'd way rather have 2 healthy kids without nursing than watch my little guy wheeze, struggle to breathe, and require more and more O2 to keep him satting in the 90s. :(
We are suppose to go to Maine for Thanksgiving to spend with my family on Wednesday. Please pray he is well enough to go and that Serena stays healthy. She slept with high sats all night without O2, and appears to feel ok.
As for development, Serena has well over 100 words and was repeating EVERYTHING yesterday. Daddy is beginning to teach her Spanish because she appears ready. Edwin(before he got sick Friday night) was doing WONDERFULLY with his walker, independent standing for several seconds, and verbalizing (making sounds, not clear cut words.) We have an appointment with a specialized speech clinic through Boston's Childrens set for the end of March (first avilable...but we are on the cancellation list.)
Hopefully he can feel better and get back to some of his independence with standing and walking in the walker. Right now he's a limp, floppy, sick, tired noodle. My poor baby....
***Update...got a call from Children's...there was a cancelation for Dec 30th. He will be seen and evaluated then. I am hopeful they will have a plan for him and help us move toward a talking/understanding Edwin. :)
***2nd update. Edwin slept through the night with only 1/4 liter of O2, had sats at 98 all night, didn't desat once, didn't cough or cry once, and was still sleeping when I left at 10 this morning! So was Serena (her sleep has been disrupted by E the past few days. Yay! Looks like we can go to Maine tomorrow to be with family on Thanksgiving!!!!!! Everyone enjoy your Holiday!
I shouldn't have complained too much. I'd way rather have 2 healthy kids without nursing than watch my little guy wheeze, struggle to breathe, and require more and more O2 to keep him satting in the 90s. :(
We are suppose to go to Maine for Thanksgiving to spend with my family on Wednesday. Please pray he is well enough to go and that Serena stays healthy. She slept with high sats all night without O2, and appears to feel ok.
As for development, Serena has well over 100 words and was repeating EVERYTHING yesterday. Daddy is beginning to teach her Spanish because she appears ready. Edwin(before he got sick Friday night) was doing WONDERFULLY with his walker, independent standing for several seconds, and verbalizing (making sounds, not clear cut words.) We have an appointment with a specialized speech clinic through Boston's Childrens set for the end of March (first avilable...but we are on the cancellation list.)
Hopefully he can feel better and get back to some of his independence with standing and walking in the walker. Right now he's a limp, floppy, sick, tired noodle. My poor baby....
***Update...got a call from Children's...there was a cancelation for Dec 30th. He will be seen and evaluated then. I am hopeful they will have a plan for him and help us move toward a talking/understanding Edwin. :)
***2nd update. Edwin slept through the night with only 1/4 liter of O2, had sats at 98 all night, didn't desat once, didn't cough or cry once, and was still sleeping when I left at 10 this morning! So was Serena (her sleep has been disrupted by E the past few days. Yay! Looks like we can go to Maine tomorrow to be with family on Thanksgiving!!!!!! Everyone enjoy your Holiday!
Wednesday, November 19, 2008
What to do, what to do?
Edwin and Serena received home care nursing in our home because they needed oxygen....24/7 at first, and gradually have managed sleeping without it two years later. Nursing allowed me to work, which is how we have health insurance and money to pay our bills.
But we are now faced with a problem...Who will watch the kids once we lose our nursing? Which will surely happen soon since they are technically 100% off O2 WHEN healthy. We can't send them to any day care for a number of reasons.
1.) The risk of illness (don't even have to get into this if your preemie has respiratory issues like ours.)
2.) EI comes to our home to do therapy. Where will they do therapy if they go to daycare?
3.) What daycare will take children who have a history of respiratory distress and may need O2 if they get a URI? They need breathing treatments at times. Albuterol increases heart rate and must be used carefully.Sometimes they need pregnisone. Who can I trust to administer this to the kids?
4.) Serena is clumsy and needs to be watched closely. She cannot walk down stairs, but thinks she can. Needs to have one-on-one care when going outside, down stairs, etc.
5.) Edwin is basically nonverbal...does sign and attempts words, but not like a typical 2 year old in the least. Who will one-on-one teach him sign and show him his picture book and encourage verbal language?
Edwin does not walk without the support of his reverse walker, which he needs to be constantly supervised with because he is not proficient with it yet. Edwin needs someone to put on his AFOs and take them off, check for red marks, practice standing with AFOs, etc. This takes some amount of skill to do well.
Edwin "w" sits if not corrected by someone. (Cannot rotate his trunk to get from crawlng to sittng on his bum on his own.) Someone constantly needs to sit with him and "fix his legs" so that he can use his trunk correctly and not sit in "w". How can this be accomplished in a day care of multiple children?
6.) Edwin has low tone in his mouth. He tends to overstuff his mouth when eating. He needs to be very carefully monitored...needs to be encouraged to self feed but watched so that he doesn't choke. Who can I trust with this?
I have called everywhere in my area. There are ZERO daycares that deal with children with medical and/or special needs!!!! We might get covered for a home health aid to care for Edwin in the home because of his multiple delays and needs, but they will not care for Serena...meaning I would have to separate them, which I DO NOT want to do. They are too "healthy" to continue with home nursing, and "too able and healthy" to meet the requirements of a medical daycare; and yet they are "too needy" for me to send them to mainstream daycare.
We don't make enough to justify hiring a nanny, and I don't 100% trust my MIL. She doesn't speak English which would also pose a problem in encouraging Edwin to use verbal language. My parents work full time jobs...not an option. We have no other family around that could care for them.
So, we have all of these needy preemie being discharged every day and yet do not have daycare facilities that are appropriate for them, with their developmental issues, sensory issues that many have, and ongoing medical issues.
What are these parents suppose to do?
As for me...it makes sense to not get married, quit my job, get free healthcare and SSI, and care for my kids myself. (Probably not my choice, but I'm not ruling it out.)
Ok, Ok, so we're not completely out of options. Edwin's mom could watch them both if we were in a bind, or we could have her watch Serena while the home health aid cared for Edwin. But this is a problem for families, and I believe there should be special and medical need daycare facilities staffed with nurses, OTs, PTs, and STs. There should be a daycare option for kids like our for preemies, and other special needs/medically needy kiddos.
But we are now faced with a problem...Who will watch the kids once we lose our nursing? Which will surely happen soon since they are technically 100% off O2 WHEN healthy. We can't send them to any day care for a number of reasons.
1.) The risk of illness (don't even have to get into this if your preemie has respiratory issues like ours.)
2.) EI comes to our home to do therapy. Where will they do therapy if they go to daycare?
3.) What daycare will take children who have a history of respiratory distress and may need O2 if they get a URI? They need breathing treatments at times. Albuterol increases heart rate and must be used carefully.Sometimes they need pregnisone. Who can I trust to administer this to the kids?
4.) Serena is clumsy and needs to be watched closely. She cannot walk down stairs, but thinks she can. Needs to have one-on-one care when going outside, down stairs, etc.
5.) Edwin is basically nonverbal...does sign and attempts words, but not like a typical 2 year old in the least. Who will one-on-one teach him sign and show him his picture book and encourage verbal language?
Edwin does not walk without the support of his reverse walker, which he needs to be constantly supervised with because he is not proficient with it yet. Edwin needs someone to put on his AFOs and take them off, check for red marks, practice standing with AFOs, etc. This takes some amount of skill to do well.
Edwin "w" sits if not corrected by someone. (Cannot rotate his trunk to get from crawlng to sittng on his bum on his own.) Someone constantly needs to sit with him and "fix his legs" so that he can use his trunk correctly and not sit in "w". How can this be accomplished in a day care of multiple children?
6.) Edwin has low tone in his mouth. He tends to overstuff his mouth when eating. He needs to be very carefully monitored...needs to be encouraged to self feed but watched so that he doesn't choke. Who can I trust with this?
I have called everywhere in my area. There are ZERO daycares that deal with children with medical and/or special needs!!!! We might get covered for a home health aid to care for Edwin in the home because of his multiple delays and needs, but they will not care for Serena...meaning I would have to separate them, which I DO NOT want to do. They are too "healthy" to continue with home nursing, and "too able and healthy" to meet the requirements of a medical daycare; and yet they are "too needy" for me to send them to mainstream daycare.
We don't make enough to justify hiring a nanny, and I don't 100% trust my MIL. She doesn't speak English which would also pose a problem in encouraging Edwin to use verbal language. My parents work full time jobs...not an option. We have no other family around that could care for them.
So, we have all of these needy preemie being discharged every day and yet do not have daycare facilities that are appropriate for them, with their developmental issues, sensory issues that many have, and ongoing medical issues.
What are these parents suppose to do?
As for me...it makes sense to not get married, quit my job, get free healthcare and SSI, and care for my kids myself. (Probably not my choice, but I'm not ruling it out.)
Ok, Ok, so we're not completely out of options. Edwin's mom could watch them both if we were in a bind, or we could have her watch Serena while the home health aid cared for Edwin. But this is a problem for families, and I believe there should be special and medical need daycare facilities staffed with nurses, OTs, PTs, and STs. There should be a daycare option for kids like our for preemies, and other special needs/medically needy kiddos.
Saturday, November 15, 2008
Pulmonology and other news
The kids have been sleeping through the night with no O2 and have maintained high sats all night. Because of this, we got the ok to d/c their monitors while asleep. Great news! Only, I'm not ready. I'll wean myself off the monitor someday. For now, it doesn't bother the kids, so I'll keep it on.
We don't go back for NINE months!!! Hurray!!!!
In other news, our trip was fun. I missed the kids, but it was nice to be warm for a bit. They did very well without us and didn't seem too sad we were gone; which made me pretty sad. But they have an amazing Grammy and I'm sure that had a whole lot to do with it.
Both kids are doing well. Edwin is making more sounds and attempts to talk. Via a referral from my friend Kelly, I got an intake form for him at an intensive speech clinic through Children's Hospital in Boston. I look forward to his eval with them, which will hopefully be within a month or so. (We'll be on the cancellation list.)
He is doing MUCH better with balance, standing, and in his walker...new video to come soon.
Serena is doing well. Learning her letters and putting words together. The fact that she can't walk down steps is scary, because she thinks she can. We had a pretty nasty fall at a birthday party today when she thought she could walk off the step and landed face first before anyone could grab her. No blood...just redness. She was fine thank god, but she has some gross motor issues and the developmentalist noted n NICU follow up that she has some overall low tone as well. PT will likely begin working with her as well.
This week they will begin speech therapy class at EI. The bus will pick them up with the nurse and bring them to the EI clinic where they will have "class" from 10:30-12. I'll be at work :( but will take at least one day off to check it out.
Exciting!!!!
We don't go back for NINE months!!! Hurray!!!!
In other news, our trip was fun. I missed the kids, but it was nice to be warm for a bit. They did very well without us and didn't seem too sad we were gone; which made me pretty sad. But they have an amazing Grammy and I'm sure that had a whole lot to do with it.
Both kids are doing well. Edwin is making more sounds and attempts to talk. Via a referral from my friend Kelly, I got an intake form for him at an intensive speech clinic through Children's Hospital in Boston. I look forward to his eval with them, which will hopefully be within a month or so. (We'll be on the cancellation list.)
He is doing MUCH better with balance, standing, and in his walker...new video to come soon.
Serena is doing well. Learning her letters and putting words together. The fact that she can't walk down steps is scary, because she thinks she can. We had a pretty nasty fall at a birthday party today when she thought she could walk off the step and landed face first before anyone could grab her. No blood...just redness. She was fine thank god, but she has some gross motor issues and the developmentalist noted n NICU follow up that she has some overall low tone as well. PT will likely begin working with her as well.
This week they will begin speech therapy class at EI. The bus will pick them up with the nurse and bring them to the EI clinic where they will have "class" from 10:30-12. I'll be at work :( but will take at least one day off to check it out.
Exciting!!!!
Saturday, November 8, 2008
Standing unassisted???? **Edited AGAIN with pictures and video**
*Check out video...last night blogger was messing up and I couldn't view the video...I uploaded one of our attempts where he didn't stand by mistake. Below is the actual standing success!*
Edwin stood unassisted for 5 seconds last night 3 different times!!!!! This may seem like a small feat for a two year old, but it was amazing to us! Edwin, Sr and I were nearly in tears. He did it once without his AFOs and the other times with them.
I will try and get a picture today!
He is getting so much stronger!!!!!
Maybe he will be walking better in his walker with this increased strength and confidence!
Tubby with Daddy (he has shorts on :) )
Curly Q
Check out Edwin's hair cut!
Edwin video taped this...I don't know how to fix the angle, but check it out!
The last video I uploaded was not the one where he stood. Here is the correct one!
Edwin stood unassisted for 5 seconds last night 3 different times!!!!! This may seem like a small feat for a two year old, but it was amazing to us! Edwin, Sr and I were nearly in tears. He did it once without his AFOs and the other times with them.
I will try and get a picture today!
He is getting so much stronger!!!!!
Maybe he will be walking better in his walker with this increased strength and confidence!
Tubby with Daddy (he has shorts on :) )
Curly Q
Check out Edwin's hair cut!
Edwin video taped this...I don't know how to fix the angle, but check it out!
The last video I uploaded was not the one where he stood. Here is the correct one!
Wednesday, November 5, 2008
A lengthy update
So I have been pretty good at posting a lot of cute pictures of the kids, but have not written much on how they are developing.
There is a lot of news.
First off...we had our appointment with orthopedics. PT came (the one who disagrees with the AFOs.) Her last day was last Friday, but it was worth her going since she had really been trying to convince me AFOs are hindering, not helping, E.
THe doc disagreed, and felt it is hard to really tell the benefit because he does not walk, stand independently, or walk well in his walker...(he takes 12-15 steps, but usally drops to his knees to crawl...it's faster and easier afterall.)
So the plan is to wear the AFOs 1/2 of the time in the walker, and 1/2 time with plain sneakers. Then we can see if we notice a difference between the two as he improves in his walker.
The new PT started today, and I couldn't be there, but will get the update this evening. I've met her before and she is really nice, and hopefully has some good ideas for our little guy.
Edwin now has 3 signs..."more" "eat" and "all done." He is pretty consistent with them and uses them appropriately, often without prompting. We are trying to introduce other signs, slowly, every day.
At their NICU follow-up yesterday I voiced my many concerns related to E not walking and not talking. He did wonderfully with attention space and did well with fine motor while sitting in a wooden chair. His trunk is still so low toned that it is harder for him to use his hands gracefully and smoothly, but he can accomplish many tasks. Basically, he has improved 4 months development wise since we last saw them 6 months ago. He is still significantly delayed.
Yesterday was the first time anyone said anything to us about possible apraxia, although of course I figured it was coming. This website explains apracia of speech well for any who don't know what it is. http://www.apraxia-kids.org/site/apps/nlnet/content.aspx?c=chKMI0PIIsE&b=839037&ct=837215
It's begining to get a little stressful and heartbreaking that our guy is not walking, standing independently, or talking at all. We went from an infant who was delayed, to a toddler who is significantly delayed in areas that are directly impacting his life, and ours. And I can't deny I am worried and a bit overwhelmed at the thought of just how far he is falling behind.
I try to stay positive and focus on our next steps, which onclude continuing to use sign, creating a picture book of things in his world that he needs to point to to tell us he wants, and labeling things so we can tell him the word and get him to identify it, if even by sight and not by word.
I am also going to lok into a clinic about an hour away which specializes in communication adaptations/strategies for nonverbal children.
We were told they do not think he will be totally nonverbal, but we have to prepare for what can help him now, because he is not talking, and we need to eliminate as much of his frustration as possible.
As for his low tone...still no one wants to say CP. We see neuro at the end of January and then we'll see. I guess they are seeing more of this pervasive low tone, which impairs children who had severe respiratory illness, but I tend to think it is neurological and a result of the damage his brain suffered with lack of oxygen and his extreme prematurity in general. Usually, strictly hypotonic CP is quite severe and the child can't pull to stand, but this rarer "breed" of mild hypotnic CP seems to fit Edwin, even if no one else wants to see it. He still has no tightness, which I am very grateful for, because spascity can be painful, and can demand surgeries and botox. It seems to me he will get stronger with time, but that his hypotonia is not going to resolve completely...it will impact his life.
On a high note, his attentiveness was excellent and he is very interested in things and focuses very hard. He doesn't give up, and will scan the page intently trying to locate the object he saw on the previous page. He tries so hard, it just breaks my heart that everything is such a challenge for him. I wish I could just fix everything!
As for Serena, she is doing well. Her attention span isn't great, but that could be typical of being a 2 year old. Her balance is not good, and she needs to work on it with practice. She can not walk down stairs because when she tightens her quad muscle, she doesn't release it to take the step down...and thus end up walking/falling down the stairs like athe stiff legged Tin Man would. That will just take practice and work with PT, who I am insisting begins seeing her in addition to seeing Edwin.
Her language is coming along great and she can follow multi step directions with ease. She is begining to put two words together, can name some colors (blue and red), knows that 2 comes after 1, and knows most of her body parts and her favorite animals/characters from boks. She knows a coo says "moo" and that cookie monster says "nahr, narh, narh" (Daddy does that to her..."Mmmmm Cookie! Narh, Narh, NArh!). It's really cute. She is also now learning spanish via Daddy, and says "Hola!"
On another positive note, both kids are sleeping through the night without O2. This means they are basically 100% off of O2, minus when they have a cold (they need O2 to sleep when they have a cold.)
So it's good and bad...good because their lungs are better and bad because we will lose nursing and I depend on them to be home with the kids while I work and while Edwin works/school/and trains full time for boxing. So I am semi panicked for what we'll do, but it'll work out somehow.
Daycare is not an option because of the risk of getting sick, the lack of knowledge they will have with a nonverbal/nonwalking two year old, and who will do their therapies? Now, they come to our home with the nurse and I come home on lunch break for PT. I think we can get a PCA in the home because of the delays and risk of illness, but I'm not sure and of course, scared to have new people in the home with them. Our nurses know them so well and they feel comfortable with their needs. Ugh....STRESS!!!
Anyay, better get back to work. More to come!
P.s. Edwin and I are going to Florida on Monday for a 3 day getaway (the kids will be with my mom.) Can't WAIT! But am going to miss my darlings incredibly!!!!!!
There is a lot of news.
First off...we had our appointment with orthopedics. PT came (the one who disagrees with the AFOs.) Her last day was last Friday, but it was worth her going since she had really been trying to convince me AFOs are hindering, not helping, E.
THe doc disagreed, and felt it is hard to really tell the benefit because he does not walk, stand independently, or walk well in his walker...(he takes 12-15 steps, but usally drops to his knees to crawl...it's faster and easier afterall.)
So the plan is to wear the AFOs 1/2 of the time in the walker, and 1/2 time with plain sneakers. Then we can see if we notice a difference between the two as he improves in his walker.
The new PT started today, and I couldn't be there, but will get the update this evening. I've met her before and she is really nice, and hopefully has some good ideas for our little guy.
Edwin now has 3 signs..."more" "eat" and "all done." He is pretty consistent with them and uses them appropriately, often without prompting. We are trying to introduce other signs, slowly, every day.
At their NICU follow-up yesterday I voiced my many concerns related to E not walking and not talking. He did wonderfully with attention space and did well with fine motor while sitting in a wooden chair. His trunk is still so low toned that it is harder for him to use his hands gracefully and smoothly, but he can accomplish many tasks. Basically, he has improved 4 months development wise since we last saw them 6 months ago. He is still significantly delayed.
Yesterday was the first time anyone said anything to us about possible apraxia, although of course I figured it was coming. This website explains apracia of speech well for any who don't know what it is. http://www.apraxia-kids.org/site/apps/nlnet/content.aspx?c=chKMI0PIIsE&b=839037&ct=837215
It's begining to get a little stressful and heartbreaking that our guy is not walking, standing independently, or talking at all. We went from an infant who was delayed, to a toddler who is significantly delayed in areas that are directly impacting his life, and ours. And I can't deny I am worried and a bit overwhelmed at the thought of just how far he is falling behind.
I try to stay positive and focus on our next steps, which onclude continuing to use sign, creating a picture book of things in his world that he needs to point to to tell us he wants, and labeling things so we can tell him the word and get him to identify it, if even by sight and not by word.
I am also going to lok into a clinic about an hour away which specializes in communication adaptations/strategies for nonverbal children.
We were told they do not think he will be totally nonverbal, but we have to prepare for what can help him now, because he is not talking, and we need to eliminate as much of his frustration as possible.
As for his low tone...still no one wants to say CP. We see neuro at the end of January and then we'll see. I guess they are seeing more of this pervasive low tone, which impairs children who had severe respiratory illness, but I tend to think it is neurological and a result of the damage his brain suffered with lack of oxygen and his extreme prematurity in general. Usually, strictly hypotonic CP is quite severe and the child can't pull to stand, but this rarer "breed" of mild hypotnic CP seems to fit Edwin, even if no one else wants to see it. He still has no tightness, which I am very grateful for, because spascity can be painful, and can demand surgeries and botox. It seems to me he will get stronger with time, but that his hypotonia is not going to resolve completely...it will impact his life.
On a high note, his attentiveness was excellent and he is very interested in things and focuses very hard. He doesn't give up, and will scan the page intently trying to locate the object he saw on the previous page. He tries so hard, it just breaks my heart that everything is such a challenge for him. I wish I could just fix everything!
As for Serena, she is doing well. Her attention span isn't great, but that could be typical of being a 2 year old. Her balance is not good, and she needs to work on it with practice. She can not walk down stairs because when she tightens her quad muscle, she doesn't release it to take the step down...and thus end up walking/falling down the stairs like athe stiff legged Tin Man would. That will just take practice and work with PT, who I am insisting begins seeing her in addition to seeing Edwin.
Her language is coming along great and she can follow multi step directions with ease. She is begining to put two words together, can name some colors (blue and red), knows that 2 comes after 1, and knows most of her body parts and her favorite animals/characters from boks. She knows a coo says "moo" and that cookie monster says "nahr, narh, narh" (Daddy does that to her..."Mmmmm Cookie! Narh, Narh, NArh!). It's really cute. She is also now learning spanish via Daddy, and says "Hola!"
On another positive note, both kids are sleeping through the night without O2. This means they are basically 100% off of O2, minus when they have a cold (they need O2 to sleep when they have a cold.)
So it's good and bad...good because their lungs are better and bad because we will lose nursing and I depend on them to be home with the kids while I work and while Edwin works/school/and trains full time for boxing. So I am semi panicked for what we'll do, but it'll work out somehow.
Daycare is not an option because of the risk of getting sick, the lack of knowledge they will have with a nonverbal/nonwalking two year old, and who will do their therapies? Now, they come to our home with the nurse and I come home on lunch break for PT. I think we can get a PCA in the home because of the delays and risk of illness, but I'm not sure and of course, scared to have new people in the home with them. Our nurses know them so well and they feel comfortable with their needs. Ugh....STRESS!!!
Anyay, better get back to work. More to come!
P.s. Edwin and I are going to Florida on Monday for a 3 day getaway (the kids will be with my mom.) Can't WAIT! But am going to miss my darlings incredibly!!!!!!
Sunday, November 2, 2008
Tuesday, October 28, 2008
Picture post
Uncle Ethan's school's Halloween Party! (Ethan's the pirate in the middle)
Playing outside!!!
Playing inside!
And two very tired kiddies. AND sleeping WITHOUT oxygen now!!!!!
Playing outside!!!
Playing inside!
And two very tired kiddies. AND sleeping WITHOUT oxygen now!!!!!
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