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!