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!
Monday, November 24, 2008
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!!!!!
Thursday, October 23, 2008
HE DID IT!!!!!
Signing with him is in full effect. He finally "gets it" and we are soooo thrilled. What an accomplishment! So proud of you precious boy!!!!
***Serena said and signed "more" as well and I thought Daddy caught it, but he didn't. (You can also hear her say "mama", "more", "okay" and "up up".) Edwin also waved on command, although Daddy only got the tail end because he zoomed in too much. P.S. he learned this sign for the first time today at our 2 hour wait at ortho. More about that in tomorrow's post, entitled "To AFO or not to AFO...that is the question."
***Serena said and signed "more" as well and I thought Daddy caught it, but he didn't. (You can also hear her say "mama", "more", "okay" and "up up".) Edwin also waved on command, although Daddy only got the tail end because he zoomed in too much. P.S. he learned this sign for the first time today at our 2 hour wait at ortho. More about that in tomorrow's post, entitled "To AFO or not to AFO...that is the question."
Sunday, October 12, 2008
Pictures from last weekend (a little late sorry)
Serena putting Edwin to sleep...she really put all those there!!!!
Old Sturbridge Village
Columbus Day Parade
Old Sturbridge Village
Columbus Day Parade
Tuesday, October 7, 2008
Now that they're 2...
It is with great joy I can finally say that I do not know exactly how many words Serena can say. Serena is talking up a storm and language is coming so easily to her. She uses phrases, uses words to idenitfy things, and uses words to ask for what she wants. She also says and signs "more" the only sign we do since Edwin still hasn't mastered it, although we keep trying!
Serena says, "come on" when she doesn't get what she wants (no lie...it's super funny!) Her favorites are: "stop it", "no", "mine", "eat", "tubby", "wead" (read), "pssssp" (please), "Elmo" (a favorite), "cookie", "hotdog", "bone" (phone), "George" (of Curious George), "Dora" (of Dora the Explorar, known via her dolls not the show) and "all done." The other day she said "I see you" after I said that to her when she was hiding (a favorite thing to do). It was so funny! Serena is probably still delayed for her actual age of 2, but there is nothing outright concerning about her development. She walks, tries to run, has great receptive and actual language, eats everything in sight, and is now drinking water from a sippy cup!!!! Big accomplishment for her! She doesn't like juice, but I'm ok with her drinking milk from a bottle and water from the sippy!
Even though Edwin is only 3 minutes younger than Serena, he is several months behind her in most areas...which can be tough to admit sometimes. He still doesn't walk and we are having a big team meeting Thursday to address the differing opinions of the AFOs. He is crawling up stair reciprically, which is what our current PT says will help him with walking better in his walker. He does pretty well with the walker but doesn't have very good leg separation and often takes small close together steps instead of nice, "normal" ones. The little close steps cause him to lose balance and he falls to his knees.
Sitting is going wonderfully! He sits on his bum very well now and he sat on the scale at the pedi's office for the first time without panicking and trying to get off or reach for someone! It was amazing and I was so proud! You can see him using his trunk while sitting (he sometimes sways) and this goes to show he still has a lot of strengthening to work on, but he is making great progress.
I asked PT if I'd get my Christmas wish of Edwin walking, and she said he might be able to take steps, but not full walking, but she did say that he would be before his 3rd birthday. All in time I guess.
Little man is still not talking either, but we are really working on it. Sometimes I worry about it, but with his other delays, I'm hopeful it will come in time and that his brain is so busy working on gross motor and balance that language in on the back burner for now.
We have an appointment with the neurologist in January and a NICU follow up visit next month. It'll probably be a little tough to hear just how delayed he is, but he has come sucha long way from not being able to sit at all or crawl on open palms and knees. I know he will do things, it is just going to take him longer.
It truly goes to show that every child's development is different, and in cases of making decisions about resuscitation for 23 weekers...clearly individuals differ. And due to everything they went through, I am so proud and grateful for both of their progress! They are happy, loved (and know it), and very social. Those things are very important to me...more so than their specific developmental milestone being hit at specific times.
In Edwin, Sr news, he is fighting Nov 8th in Boston. I sent out an email to many people, but if I have forgotten you and you are interested, email me. This is a very important fight...he is the MAIN EVENT and it is scheduled for 8 rounds (his first 8 rounder!)
There is also big news about his career that will be coming up within the next few months. Things are coming along, and we are very excited!
Serena says, "come on" when she doesn't get what she wants (no lie...it's super funny!) Her favorites are: "stop it", "no", "mine", "eat", "tubby", "wead" (read), "pssssp" (please), "Elmo" (a favorite), "cookie", "hotdog", "bone" (phone), "George" (of Curious George), "Dora" (of Dora the Explorar, known via her dolls not the show) and "all done." The other day she said "I see you" after I said that to her when she was hiding (a favorite thing to do). It was so funny! Serena is probably still delayed for her actual age of 2, but there is nothing outright concerning about her development. She walks, tries to run, has great receptive and actual language, eats everything in sight, and is now drinking water from a sippy cup!!!! Big accomplishment for her! She doesn't like juice, but I'm ok with her drinking milk from a bottle and water from the sippy!
Even though Edwin is only 3 minutes younger than Serena, he is several months behind her in most areas...which can be tough to admit sometimes. He still doesn't walk and we are having a big team meeting Thursday to address the differing opinions of the AFOs. He is crawling up stair reciprically, which is what our current PT says will help him with walking better in his walker. He does pretty well with the walker but doesn't have very good leg separation and often takes small close together steps instead of nice, "normal" ones. The little close steps cause him to lose balance and he falls to his knees.
Sitting is going wonderfully! He sits on his bum very well now and he sat on the scale at the pedi's office for the first time without panicking and trying to get off or reach for someone! It was amazing and I was so proud! You can see him using his trunk while sitting (he sometimes sways) and this goes to show he still has a lot of strengthening to work on, but he is making great progress.
I asked PT if I'd get my Christmas wish of Edwin walking, and she said he might be able to take steps, but not full walking, but she did say that he would be before his 3rd birthday. All in time I guess.
Little man is still not talking either, but we are really working on it. Sometimes I worry about it, but with his other delays, I'm hopeful it will come in time and that his brain is so busy working on gross motor and balance that language in on the back burner for now.
We have an appointment with the neurologist in January and a NICU follow up visit next month. It'll probably be a little tough to hear just how delayed he is, but he has come sucha long way from not being able to sit at all or crawl on open palms and knees. I know he will do things, it is just going to take him longer.
It truly goes to show that every child's development is different, and in cases of making decisions about resuscitation for 23 weekers...clearly individuals differ. And due to everything they went through, I am so proud and grateful for both of their progress! They are happy, loved (and know it), and very social. Those things are very important to me...more so than their specific developmental milestone being hit at specific times.
In Edwin, Sr news, he is fighting Nov 8th in Boston. I sent out an email to many people, but if I have forgotten you and you are interested, email me. This is a very important fight...he is the MAIN EVENT and it is scheduled for 8 rounds (his first 8 rounder!)
There is also big news about his career that will be coming up within the next few months. Things are coming along, and we are very excited!
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