Finally an update!!!! **Edited***with pictures

I got a message today from someone who reminded me of the many people who have followed Serena and Edwin's progress over the past (almost) 3 years. It is incredibly touching to know that people who barely know me are so supportive and caring. It means so much that I can share S&E's story and people are touched by their incredible courage and fighting spirit. I realized I should probably take time to update more on how they are doing and the new things they are accomplishing everyday.

It's funny...in only a few weeks S&E will turn 3. It seems like there is no possible way that 3 years have gone by. We have been through so much in such a short period of time, and it's truly remarkable the progress they have made. There are still many hurdles, but especially around this time of year I try to focus on the positives. Although their birthday will always feel a little bittersweet to me, it is a day of celebration, and I truly cannot wait this year!

One of the most exciting things to share is Edwin is walking more and more. And not just with his walker...INDEPENDENT walking! He went from taking a few steps, to literally walking around! This includes stopping, turning, and purposely walking in a controlled way. He is also a safe walker...dropping to his knees when he loses balances as opposed to falling backward. His type of cerebral palsy (he's completely hypontonic) is relatively rare, and it was difficult for anyone to predict how he would do gross motor wise. For the longest time he couldn't sit up, couldn't crawl on his hands and knees, and certainly didn't appear like he would be able to stand or walk independently. But over the past few months, and really weeks, he has made unbelievable progress and we are extremely proud and excited about what this can mean for him as he gets older. Although he is not yet 3, and he is globally developmentally delayed, he KNOWS he wants to walk, and knows his peers and sister walk, and he wants to so badly. It is heartwarming to see him try and continue to try and now accomplishing his goal. My Christmas wish is for him to basically use independent walking as his main mode of getting around within short distances. I believe this wish will come true this year!
Some things we are addressing as he starts his Special Ed Pre-K program on the 29th is obviously related to gross motor, and also language. He is not really "talking" although he has word approximations and signs. He is making great progress in this area too, but we would like him to be able to communicate (in any form he can) well enough that he does not become frustrated, and can get his needs and wants met. We have our IEP meeting next week and I will update you all on that.

Serena is amazing. She is extremely bright, loves to "read" (she memorizes books and pretends to read), loves to be the boss, and loves to cuddle. She really looks out for her brother and let's us know what he wants even when he can't ask for it. She anticipates his needs really well and it's so cute to see her advocate for him! She looooves Dora and recently got Dora underpants but has no desire to pee in the potty even though she wants to wear them! lol.
Her greatest obstacles include her significant asthma and reactive airway and her paralyzed vocal cord which affects the volume of her voice. She also has some issues with balance and gross motor coordination which will be addressed on her IEP as well. She is unable to walk up and down stairs without assistance, but she is getting much better with practice at home and at daycare.
Apparently at daycare Serena is not talking much. She is not using her words to request games or to interact with her peers. When she does talk her voice is so quiet most people can't understand her and she seems to get embarrassed or shy when she is asked to repeat herself. She talks really well at home with her brother or with her cousins, but that's with one or two other kids. We are thinking there is a sensory component to her not using her words at daycare where things are loud and distracting. This is something that will be reveiwed more once she begins school. Hopefully with prompting and building confidence she will begin to be as talkative in the school and daycare as she is at home.

There is a lot of fear for us as parents as the fall and winter approach. This year they will be exposed to germs at school and at daycare for the first time in their lives. Prior to this they were kept home and cared for by a nurse as they were still needing oxygen last year. This year they will be "out in public" and with all the news about swine flu and other illnesses, we are expecting a rough year, which unfortunately could very likely include more hospitalizations. The kid's pulmonologist told us to expect that Serena in particular is at risk for hospitalizations for respiratory illnesses for the next 2 years! It's extremely scary when she needs help to breathe and I am hoping it won't be too bad this year for either of them when it comes to illnessness. We will all be getting flu shots and hope this may help.

So theres a quick overview of S&E. We are so excited to see them growing and doing things we really couldn't be sure they would do. To us they are miracles, and we feel so fortunate to have them. They are extremely happy and know how much they are loved and these things are most important!!

***I copy and pasted this from facebook so I neglected to tell Bloggers that Serena was in the hospital a couple of weeks ago with RSV!!! Yes, she got RSV in August! Edwin got it as well and was quite sick, but we were able to keep him out of the hospital. Serena was in the hospital for 4 days and it took 2 1/2-3 weeks for both of them to completely recover. This recent hospitalization is what worries us about this coming cold and flu season!

Now some pictures:

July







August--Serena's hospitalization




Sept- Spencer Fair

He walks!!!

Waling over to the tv


Turns the channel on the tv, now losing his balance

Faaallling!

Back on his feet again!!!


On Monday July 13, 2009 our boy took 6-7 independent steps in his carpeted playroom. It was up there on the most joyous moments of our lives. he has repeated this several times...even holding onto the couch or his walker and continues to walk all on his own. It is truly amazing, and his ability to walk with the wlaker and steer is tremendous.
Today at daycare I see him walking downstairs in the hallways. The teacher told me that he woke up from his nap early, crawled over to his walker and tried walking around the entire classroom..only problem was all of the other kids were lying on the floor on their maps and he was trampling them!
So he got to practice around the entire building and was so proud of himself. They said he has used the walker in class all day. I think because he sees his peers walking he is much more motivated now!

Serena is doing great. She is following directions and the routine and even has friends in class that always want to play with her. She is adjusting really well, and her language is unreal. I am so incredibly amazed by her, she is developing in leaps and bounds.

I will post pictures soon!!! I also will get a video of Edwin independently walking several steps as soon as I can!






p.s. Although Edwin has AFOs and wears them...his first steps were taken with just socks on. These pics are from tonight. He has yet to walk with his AFOs, but takes steps at school with just socks or just sneakers. So hey, we are doing whatever works. And can you tell how proud of himself he is?????

"What happened to him?"

Someone asked me that yesterday, as my son wheeled himself out of his preschool building. They didn't mean anytihng by; but they are certainly old enough to know better than to phrase a question like to a mother whose 2 year old is in a wheelchair.
I also got, "Why is he like that?" "Why does he talk like that?" "Was he born like that?" "Is he autistic?" "What's cerebral palsy?" From several others...

As we emerge out of the safety and privacy of our home and into the public with curious children, teens, and adults, I find myself trying my best to explain Edwin.
A lot of people stare at him when he's practicing in his wheelchair, or leaving the building for the day in it. Some look like they want to cry, others are so proud of him, others look like they feel sorry for him, and others seem utterly confused.
I think I'm doing a pretty good job explaining to people who ask, and assessing what Iu say based on the person's age.

We had an incident yesterday where a teen who is helping in the Pre-K apparently was talking abotu Edwin to a peer. That peer approached me and told me this girl seemed to be teasing Edwin in her description of his limitations and personality. She also said that the girl said, "I'm in Special Ed (which is true she has an IEP), so I'm helping take care of the SPED kid." At this I nearly lost it, but I held it together knowing she is only a teenager, and approached her on it. She denied saying it and I'm not playing the he said, she said game. I told her how much it hurt me to hear that anyone would make fun of my child and asked that she not discuss my son, or any child with others because it's a breech of confidentiality and if people have questions about Edwin she can field those people to me. I talked to the daycare staff and they assured me they haven't observed any teasing, but did will have her help in other areas and not with Edwin. It was a stressful and painful day yesterday, not to mention he is crying every single morning we approach the building. But I know this is good for him and they both have fun once they "get over" Mommy leaving the classroom.

Hopefully today is a no-drama day....

Disbelief

I have been semi absent from the blog world, and didn't realize there has been very serious allegations surrounding one of my fellow preemie moms, a mom's blog I frequently read, a mom I privately emailed about a shared issue our children had, a mom I gave my home telephone number to as well because she seemed so interested in a procedure one of my children had!
The allegations are unimaginable to me and at no point can I begin to understand why a mother would such a thing. Mental illness, stress, etc are hypothesized reasons, but I can't fathom purposely keeping your child sick and risking their death.
I have two children with medical and special needs, and it can be challenging, but under no circumstance would I ever do anything to intentially make them sick or potentially kill them!
This mother was caught on video tape smearing feces into her daughter's IV line, and admitted to hospital staff that she had done it several times before. This is a child who was in and out of the hospital many times throughout her yoiung life, and I can only imagine if there were other instances of abuse.
I know some people will make excuses about her being overwhelmed concerning her daughter's heath, etc. But ASK for help. Reach out. She had a lot of support in this virtual preemie world and support from family. She also has other children.
I am shoked and disgusted, and hope these children have the support and love of family to care for them.

Some people might feel bad for this mother....I feel bad for the children.

First Day of Pre-School DayCare!!!!!

Wow! My babies are growing up. Yesterday they had their very first day of daycare, which is structured like a pre-school program. They went from 8:30-3:30 and did very well. Today was harder for us all to get up (I didn't sleep the night before because of anxiety..lol) so today is 9-4. They technically could go 7:30-6, but that's too long for me and them, and I only work 9-4 in the summers, so that is their schedule for July and August. The daycare is located within the same building I work in, and my office door looks directly in on their classroom; granted I don't do much office work, I am primarily in the milieu with the youth, but I have the ability to come up and check on them, which is wonderful, and really puts my mind at ease.
Both had difficulty with nap time...much different lying on a blue mat as opposed to a comfy crib, but they ended up falling asleep, which was great. They didn't drink too well, because I didn't bring a bottle as a point to teach them that they are "ion school" now and don't need it. But they took some sips from their sippy cups, edwin much better than Serena of course. PT found a loaner wheelchair for Edwin which works great and he propelled himself throughout the entire facility. It was so wonderful seeing him able to get around on his own. He also used his walker some, and had a blast. Of concern is his continued desire to put EVERYTHING in his mouth and there are things that are choking hazzards, so we have to be very careful. They both colored and made me a picture and they listened pretty well at story time. I am very pleased with how things are going. On Monday they begin daily swim, and I have a youth worker who will be taking Edwin in so he can swim the entire time! She also did a good job helping Edwin in the classroom yesterday. So far so good!

Here are some pictures of their first day!

UPDATE!!!!

Wow...these past few weeks have been so busy. I am done Summer I classes (I took one online..a pre-req to my master's program...statistics..yuk, but got an A!!!). My grad class was wonderful...Issues in Development...we had issues to present...I presented CP and ROP. I will get my grade for that class today. I have a week off until Summer Session II.
Soooo, the kid's babysitter was a disaster...well that's probably overexaggerating. Anyway, it didn't work out and my mom, dad, and Edwin pitched in to cover while we waited for the kid's to be officially 2 years 9 months (Monday!!!!) so they can start daycare. It is closed for Monday and Tuesday, so they start daycare Wed at the location I work! I am excited, although nervous, but I'm sure things will go well. Everyone seems committed to accomodating the kids and of course I'll be there to ensure it!

In other news, Edwin and I went to see a perinatologist. We want more children in the future (probably 3 years..once I complete my degree and his career is hopefully bringing in the big bucks!) But I wanted to get a sense that this was a possibility, and wanted Edwin to hear it because he really feels strongly that he doesn't want another preemie. He is scared about it, and doesn't think it would be fair to S&E and I totally get that. So we had a consult and discussed what could have possibly happened last time. Of course they are not sure, but the plan will be to get P-17 injections and have internal ultrasounds to check my cervix from 13 weeks onward. If things begin to change, I will have a cerclage placed. Then at 36 weeks (because I WILL make it to 36 weeks) I will have an amnio to check lung development, and they recommend doing a c-section at this time if the lungs appear mature enough. This is because I had a classical c-section with the twins and there is a risk of uterine abruption, especially if your body goes into labor. Since Edwin and I are considering having another if this future pregnancy goes well, we obviously do not want to risk uterine abruption. But we'll see. I know how important a full 40 weeks are, and I do not want to have a section at 36 weeks if I do not 100% have to. That is something I'll look further into. But it feels good to have a plan, and to know that more children are a possibility for us. But again, this is a few years away!

Serena and Edwin are going great. They mature more and more every day, and I can't emphasize enough how the nice weather, the back yard, and our home has made such a positive impact on their development. I am so happy with the way things are going, and it's such an amazing thing to see them so incredibly happy. Yesterday the weather was perfect and we were outside for four hours straight (with sun screen lol) and the kids played in the kiddie pool, in their little outdoor house, in the sandbox, in the grass, ate hot dogs and cheese puffs outside and I was just so thrilled to have those experiences with them...to savor those moments. We are truly blessed.
Speaking of which we went to the NICU to visit on Friday. We were able to see some of the many nurses that cared for S&E throughout their 122 day stay. We also saw 2 neonatologists as well. Everyone was impressed and happy to see them playing, smiling, and most importantly I think, being loved. I hope they understand just how important their work is, however controversial it may be at times. I know we are forever grateful for the technology and expertise of our NICU, and feel so fortunate to have our miracle children. We never dismiss their challenges or issues, but we knew we would face them, and of course to us, their lives are so worth it!

So, I don't have any new pictures, because as I went to take some yesterday I realized my memory card is missing out of it. I was upset, and need to look harder for it, or buy one. But I have to get one soon because yesterday we bought a 4' deep by 20' pool and I can't wait to get pics of the kids in it!

Happy Summer!!!!

Thoughts...

I've been a mad woman lately. Although I was accepted and again awarded a partial academic scholarship to law school...I again bailed out. Class 3 nights a week about an hour and half drive (each way) away for 4 years was just too much. Not to mention the state of the economy and the prospect of working 40 plus hours a week to make ends meet and pay for my debt for the following 3 or 4 years...uugghhh!
But, I did not completely "give up." I am currently taking graduate classes and am pursuing a masters in school counseling. It's basically what I do now in the after-school setting, but I need my masters in order to secure a job in the school system. This will enable me to work on the kid's schedule and have summer's OFF!!! I am excited. I am taking a class called "Issues in Child and Adolescent Development" and our first assignment was to chose an "issue" and present it to the class. We were told to pick something that is meaningful to us, so I chose cerebral palsy. So of course I was interested, which made the assignment easy and enjoyable. My next topic is ROP.

Things have been going well lately with the kids. Edwin is improving with his walker, and has finally, after almost 3 years, figured out how to rotate his trunk and gets into "bum" sitting all by himself!!!! This is a miracle to us and we are so pleased. He still prefers to "w" sit, but he is rotating to sitting on his bottom numerous times a day without any request from us that he "fix his legs."
Serena is really amazing with her memory, language, and creativity. I guess I am hyper-alert to all the skills they are acquiring, and am in awe of all they can do given just how high the odds were stacked against them.
However, we still have a long way to go. We still have school to face, and Edwin is still basically non-verbal, although he does say some words, his articulation is quite poor and the number of words are around 8-10. Signing is working well, and pointing to objects that he wants or needs also works to help ease his frustration. And of course independent standing and walking are still goals that we continue to work toward and hope for.
We also haven't been able to take away their bottles, although a huge accomplishment this weekend has been Serena drinking from a sippy cup and an open cup many times throughout the day...normally she outright refuses and cries uncontrollably for her "baba." Edwin won't drink out of an open cup, but will gladly drink from a sippy cup. Serena is still choking/aspirating on the water, but I think this is something she can control once she learns to control the flow and properly drink while protecting her airway. It's tough though, because I'm worried about this in daycare and at school. People are going to worry and it is one more thing that makes her "different."
Although I am amazed by the kids and feel so grateful for everything they are doing, it's hard not to notice how different they are compared to their "typical" peers. It's something I accept, but acceptance doesn't always make it less painful. Even the "little" things are tough...like Serena's voice. She can't yell, not that I want her yelling, but even when she tries to call for the dog, you can hear her attempt to increase the volume of her voice, but it doesn't work. I know this is going to affect her socially, and it just sucks she has to deal with it. Edwin's "disabilities" are more obvious, and he won't be aware (as of now) that he is "different;" but there will come a time when he does realize it, and that's going to be hard. It's so easy for me to love and accept them, but I know it's not going to be so easy for everyone else. For example, they begin daycare July 1st. The daycare is located in the same building where I work, which is why they are going there. However, they have never had a child with a physical disability and they really aren't staffed to give him the individual attention he needs. I have negotiated having an 18 year old who has a summer job to be placed in the Pre-K daycare with him to give him that attention and support he needs. But come summer, she's off to college and there is no funding to hire more staff. I am worried about how much individual attention he will receive. In school, which is only 7:55-10:35, he will have the support of an aide, but the school system doesn't help kids in daycare (and I have to work), and the funding that was available for aides in daycares has been cut given our crappy economy right now. I know having Edwin in the program is going to make everyone's jobs much harder, and I just hope they can love and accept him enough to not "resent" that he is there.
I'm probably over-analyzing things and worrying, but this world is catered toward "able-bodied" and "able-minded" people, and it's hard to create a safe place for your child with special needs in this world. Good thing I'll be in the same building checking in on them multiple times a day!
But seriously, What's NOT to LOVE????!!!!!

What are those twins up to now?

I feel like I've been so bad about blogging. It's tough...I'm so busy enjoying the house and our backyard...But I want to document and share S&E's progress, so I need to make time for blogging.
Serena and Edwin are maturing way too fast. They are growing up before our eyes, and making a lot of strides development wise.
Both are starting to eat with forks and spoons...and even EDwin who has more difficulty because of his CP, is doing fabulous! They LOVE eating with a spoon or fork.
They both love swinging on their swing set, playing outside with balls, the John Deer tracker and car Uncle Ethan passed down, shovels and buckets, and the climber/slide outdoor toy.



Serena is talking unbelievably. It is truly amazing. She doesn't just say phrases, she has full out conversations. An example from this morning. She follows me to the bathroom, "Wash hands now. Brush teeth. Hi Nala (the dog). Come here Nala. (Nala leaves) Oh, ok. Bye Nala. Where'd Nala go Mommy?" She knows pretty much everything we ask her. Although she is stuck on pink. Every time we ask her what color something is she says, "pink." Even Daddy is pink. Serena pretends to be a dog now which is really cute. She gives her animal toys drinks and says "ssssss...ahhhh." We ask her what her name is and she is now saying "Me!" But this morning she did say "Me, Ena." She is a tv freek and if you'd let her she will watch it all day, so we have to have certain times she is allowed...(in the morning so I can shower and Daddy cleans up from breakfast) sometimes after dinner while I eat or am cleaning up. But she knows every show on Noggin it seems and knows most of the characters names and sometimes the theme songs as well. She has a tremendous memory, as I did as a child, and has memorized parts of her favorite books. I am so excited for her to start daycare/Pre-K because I know she will pick up so much more...hopefully potty training which isn't happening now, partly because we aren't really trying.
Serena is learning how to share and be more gentle, but still dominates amongst all aged children. She is fiesty, cunning, and intelligent. She's adorable, and when she wants to, she will hug you oh so tight and tell you she loves you. That's the best feeling in the world! Even if she does it to the dog much more than us!




Edwin is making great progress as well. Oh, and if you didn't notice, Daddy cut off all of his hair. I was NOT happy, in fact told him specifically NOT to cut off his curls, but you know how that goes. I am getting used to it now, (after I cried about a half dozen times), and he does look older with his hair short. But anyway, Edwin is starting to pick up more signs and even combining signs..the other day he signed "more eat" unprompted which was great! He has just learned "sleep" and it is adorable to see him sign it. He is picking up verbal words as well, such as "ump" for jump, "ga" for Grandma, is saying "Mama" all the time now to call for me, "gooo," "go caaar," "whoooa," and "god" for dog. Verbal language is still a challenge for him, and he seems to do better with pointing and sign for now, so we really need to take pictures of things he may want in the house for his communication book.
Edwin is happy playing with toys, especially putting balls in his basketball hoop. He would be just as happy to watch boxing and basketball as he would to watch "Go Diego." He LOVES sports. Edwin also LOOVEs taking a tubby. He is able to rotate his trunk to sit on his bum FINALLY which is great and does this A LOT in the tub! Edwin also flips himself onto his back in the tub and lays his head in the water and starts smiling and laughing. It's a little scary and you have to watch him because he doesn't have the trunk strength to sit up, so he rolls over, which means his face goes in the water, but he LOOOVES this and does it on purpose. If you say "go swimming Edwin" this is what he does. Lays down and gets his hair wet, rolls over getting his face in the water, and then pooping up with a huge smile and laughter. I have to get it on video!
Edwin is a very happy, very lovable boy. He loves bedtime routine of tubby, jammies, and stories. He likes to turn the pages and point to his favorite pictures like we do to him get him to point. When he's done poiting to what we ask...he grabs the book and points and looks at us. I also love when you say "All done" how he puts his hands out, palms up, and rotates his wrists around...it's really cute. Sometimes when I ask him for a kiss, he will slowly lean forward and put his lips on mine. It's so adorable! He is so precious and so very loved.