Realities of child care for children with special needs

I think I have found an answer to our child care concern should we lose nursing in March and yes it does include daycare.
At first I really had no idea how day care would be an option for reasons listed in a previous post on the topic; however, I realized that socialization may actually help Serena and Edwin, and while they are being cared for in-home there is a "limit" to their view of the world during the week, and this makes me concerned. They have each other which is a huge bonus, but I think they really need the socialization, although I am very afraid of the germs.

But I look at it like this. They will be beginning preschool in September. If they aren't exposed to things now, just imagine how terrible their first year of school will be. I think it is time to attempt daycare (once we officially lose nursing hours, which is a whole other issue because they still need O2 when sick while sleeping and this will not be an option in daycare so....)

But, should they come off O2, we would be able to apply for a sliding scale to pay for daycare for them both. Then, when they turn 2 years 9 months (June) they can go to the child care center located at one of the sites I work at (I work for an agency, but onsite at two youth centers.) I know the employees well, would be in the building daily, and they are opened until 6pm, the time I leave work anyway!
The other bonus is once they start special ed preschool in September, the school system will provide transportation to school and then to the daycare center. Since they will only be in school 2 1/2 hours a day, they will then be bused to the day care center, where I will be, and they can stay there until 6.

Edwin certainly has many needs, and I thought for sure he would not be able to attend daycare. However, thanks to the Americans with Disabilities Act of 1990, Edwin can't be denied child care because of his special needs. In fact, the day care center is obligated by law to make reasonable accomidations for him and to apply for financial assistance if need be to get him the support he needs. (Which would hopefully mean another employee or aide to work more one-on-one with him.)
There is an elevator they could use with him so he didn't have to be carried down the stairs. He doesn't have to be potty trained, and in fact staff work with the child as an individual so if potty training is something they need, they will help with that, as well as with speech, using a crayon, putting on socks/shoes, etc.
There are other children who are in special ed in this program, although none have nearly as many delays and needs as Edwin...in fact none have a physical limitation, but I think he would do ok, and I'm not too worried about Serena, in fact I think it would be really good for her developmentally.
EI could do therapy right there, and I could take my lunch break so I could attend, since I'd be right down the hall.
Should there be an issue with them being sick, upset, etc. I would be readily available.
All in all I am trying to see what Edwin and Serena CAN do and realize that although they may have special needs, this does not mean they can't have access to things that typically developing children have. I am entitled to work, and not live in poverty because my children have needs. Of course I expect excellent care for them, and they are entitled and protected by law to have just that. I am worried about the health aspect, but am hoping that by the spring/summer we will be safer. And again, they will be going to school in Sept anyway, and we can't keep them isolated forever.

I am excited at the idea of them getting into daycare, which has an educational component, filled with routine, and NO TV time(although I push for no tv with the nurses, it's on quite a bit when I come home, or when Edwin stops by home in between training). They will start doing crafts with their peers, singing songs, and learning in a fun, bright, enviornment.

There are some things I worry about with respect to the 2.9 program. They are still eating in a high chair, but could eat at a little table, especially Serena...Edwin might need a chair with a little support, but July is still 6 months away so we'll cross that bridge when we get to it.
I'll have plenty of opportunities to show the program staff how to put on his AFOs, help him in his walker, and they will be present during their therapies.
I feel really relieved about this option and am doing the paperwork for the sliding scale program first thing Monday because there is a waiting list!! I have nursing hours until March, so I am set until then at least.

As for actual preschool within the school system, I talked to our city's director of Special Ed today. He was sooo nice and answered all of my questions. In a couple of months he will get the referral from EI and come out to our home to meet our family and talk about S&E. Then at 2 years 11 months (August) they will have an evaluation to "test" them. We will then have a meeting and create an IEP. This will determine what type of learning enviornment they will be in and what their needs will be in school. They will be in the daycare program where I work and this will determine where they will go to school, (district), because they will have them close for transportation purposes, which is good because I work in this area and I'll be close to them during school hours.
It seems like time is flying by and it's unbelievable that they will be in a preschool program in June and real school in Sept!!!!

I am proud of the progress they are making and so excited to see where these new steps to socialization will take them!

Went to the pedi today and....

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!!!

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....

More Christmas photos!!!

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!

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!!!

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!

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!

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.

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.