What a crazy week! We started it off on Tuesday, going to a new PT at a new facility. It was so wonderful. I love Kenny's new therapists! They couldn't get over that he was a 23 week-er! They were amazed that he was doing as well as he was! The one therapist never dealt with a 23 week-er while the other has one other patient...she is nine now. I told her that I was frustrated about what to do for Kenny, where to go, and what to expect from him. She told me that I have to take it a day at a time with him because there are not too many actual "23 weekers" alive. Yeah...24 and 25 weekers, but to be a 23 week-er....17 weeks early....truly a miracle. To ask a doctor what is wrong with him and how we can fix it is hard because honestly, they don't know. Yes, he could have CP, Autism, etc... but when it comes down to it, he was born at 23 weeks gestation...there are going to be problems.
What makes a 23 week gestation preemie different from any other preemie?
The unknown. Not too many babies born at 23 weeks gestation survive... there are a lot of unanswered questions as to what to expect from a baby that was born at 23 weeks.
So...we are going to focus on not what he HAS, but how to help him make his life productive. We are going to help him learn to be a happy, healthy, loving person that will contribute greatly to society and be the best he can be!
His legs are stiff and very sensitive to touch, his "gait" is wide and his walk is very very sloppy with standing on his toes...we are only using his gait trainer to give him a break from crawling and not for learning to walk. It will be a while before he is ready to walk...I am sad for him but we will work with what God has given us.
We are to stimulate his legs and feet with a dry washcloth to desensitize his muscles...he literally spasms when we do this...I was told that it does not hurt him...even though it looks like it does...I hate doing this, but in order for him to walk and have "normal" feeling in his legs and feet, we have to do this.
We are using signs more, using pictures for him to "choose" what he wants...haven't started that yet, but hoping he pics up on that quickly. It's hard because he doesn't say anything, show us what he wants or communicates with us...yes, he points and smiles but that is all. I just have to find how to communicate with him...and...I will!
So...now...we are starting this new PT two times a week. Next week I take him to the same place for OT...and that too will probably be 2 times a week...I THINK I am going to be a little busy! LOL!
You have to see me...I take some or all of the kids with me and I get,"wow...are they all yours?" or "I don't know how you do it."...and my favorite...the counting out loud behind my back! LOL!!!
I just have to laugh. I just do what I have to do. I don't think I'd know what to do with myself if I only had one or two kids!
On another note...my husband and I FINALLY got out for the weekend WITHOUT kids. His cousin got married and we stayed at the hotel where the reception was. It was the best "overnight" ever! We regrouped and were refreshed when we went and picked up the kids over my nieces house. The kids were great for my nieces and my sister (thank God). I feel like my old self again...ready to tackle what life has to dish to me!
What makes a 23 week gestation preemie different from any other preemie?
The unknown. Not too many babies born at 23 weeks gestation survive... there are a lot of unanswered questions as to what to expect from a baby that was born at 23 weeks.
So...we are going to focus on not what he HAS, but how to help him make his life productive. We are going to help him learn to be a happy, healthy, loving person that will contribute greatly to society and be the best he can be!
His legs are stiff and very sensitive to touch, his "gait" is wide and his walk is very very sloppy with standing on his toes...we are only using his gait trainer to give him a break from crawling and not for learning to walk. It will be a while before he is ready to walk...I am sad for him but we will work with what God has given us.
We are to stimulate his legs and feet with a dry washcloth to desensitize his muscles...he literally spasms when we do this...I was told that it does not hurt him...even though it looks like it does...I hate doing this, but in order for him to walk and have "normal" feeling in his legs and feet, we have to do this.
We are using signs more, using pictures for him to "choose" what he wants...haven't started that yet, but hoping he pics up on that quickly. It's hard because he doesn't say anything, show us what he wants or communicates with us...yes, he points and smiles but that is all. I just have to find how to communicate with him...and...I will!
So...now...we are starting this new PT two times a week. Next week I take him to the same place for OT...and that too will probably be 2 times a week...I THINK I am going to be a little busy! LOL!
You have to see me...I take some or all of the kids with me and I get,"wow...are they all yours?" or "I don't know how you do it."...and my favorite...the counting out loud behind my back! LOL!!!
I just have to laugh. I just do what I have to do. I don't think I'd know what to do with myself if I only had one or two kids!
On another note...my husband and I FINALLY got out for the weekend WITHOUT kids. His cousin got married and we stayed at the hotel where the reception was. It was the best "overnight" ever! We regrouped and were refreshed when we went and picked up the kids over my nieces house. The kids were great for my nieces and my sister (thank God). I feel like my old self again...ready to tackle what life has to dish to me!
I also want to send my condolences to the friends and family of Farrah Fawcett at Michael Jackson. May they rest in peace and the families have the strength to make it through this hard time. They both struggled with their own lives, Farrah with her strength and courage battling cancer with dignity...and Michael, with all the sadness, tragedy and accusations and secrets that entailed his life. No matter what the situation...a mother and father still lost their child, siblings lost their brother/sister, children still lost their parent and friends lost people that meant something to them. Never an easy thing. God bless this world...may there be peace, love and happiness.
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4 comments:
I knew it! Kenny is actually ahead on his own time table, and all your hard work is paying off. Such perseverance!
Keep up the good work with Kenny and all those other precious children!
Katie, well I wouldnt say that he is "ahead". He still has a way to go...still developmentally that of a 12 month old...so...we have a lot of work ahead of us. But we will NOT give up and make him the best he can be!
Thank you very much for the kind words!!! ;)
So good to hear about Kenny's progress. I think of your family all the time. And AWESOME you and your husband made it out w.o the kids for the weekend...you deserve it!!
J$, Thank you. I am feeling very hopeful. He has a long way to go but he will be the best HE can be. And yes, the weekend was great! We havent been out alone for about 1o years!!
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