Where has the time gone??

Ok, I realize I’ve been MIA lately.  It all started with a horrible toothache.  Turns out I had to have a root canal on a tooth that had a lot of infection in it and all around it.  Not feeling good for about a week was enough to get me off the schedule of blogging like I was normally.  So then the days turned into a few weeks, throw in the whole tornado damage, no power for a few days and here we are!  So I’m thinking do I want to even go back to it, or just give it up.  So I decided I’d go back to it, but not try to do it every night.  Maybe even just once or twice a week and I might have better luck at keeping that, than trying everyday.  So here goes again…..and we’ll see how it goes…..bear with me!haha  Thanks for you that have asked me about it!

Happy Mother’s Day!

So I’ll start this one with a Happy Mother’s Day to all you mom’s that read this.  My mother’s day weekend has been interesting for sure.  Savannah got up yesterday and said her tummy didn’t feel good.  So was in a different mode for sure.  This went on all morning long.  Then around 12:30 she was laying on the couch and I was asking her how she felt, she said she thought she was going to throw up.  Now this is extremely rare (and not the best of subjects I realize, but we’ve all done it, right?) for anyone with Prader-Willi Syndrome to throw-up and in her whole life she has probably done it only 2 or 3 times.  So I told her that wasn’t something she did much, but if she needed to she needed to, she needed to go to the bathroom.  About that time it hit her and it was everywhere.  She doesn’t really “know how” to throw up either, so it’s not pretty at all, not that it ever is.  It scared her actually.  Meanwhile I had about 4 things I had to do all day, starting early and going to the last thing at 11:15 last night.  So I was trying to get in the shower and get out the door for my 2:00 thing when this happened.  Jeff was here and we got her settled and I left.  While I was gone she got sick one more time.  So while we don’t know if this is a tummy virus, or something she ate, or something else that we aren’t even thinking of, it’s very rare.  She complained with a headache off and on and got up saying she had a headache this morning.  But today she’s ate and kept that down and seems to feel better, so if she makes it through the night and seems to feel fine, I guess she’ll be back to school tomorrow.  I’m praying it’s not a virus and Jeff and I don’t get it.  So far so good.  It’s just always very concerning when she does these really rare things and we just don’t know why or what’s wrong.  But hopefully she’s over it and tomorrow will be a much better day.  Even through all of that it’s been a great mother’s day.  I talked to both boys, Chad brought me a hanging flower, Jeff got me roses and I talked with Tyler on the phone tonight for about an hour.  I’m so proud of all three of my children and love being their mom!

She’s pitching a fit! :)

A baby’s cry is a very special thing.  It can keep you up, and everyone else in the house.  But from that first cry you hear to the many other cries you hear they always mean something.  They are hungry, tired, sleepy, sick tummy, hurting, or many other things.  I remember Savannah did have a good cry at birth, but after that it was like she didn’t really cry at anything.  She didn’t respond to them poking and prodding at her in the NICU like they thought she should for sure.  But over time she definitely developed a little cry.  One thing I remember was that we didn’t wait for her to cry to know she was hungry.  For many weeks I set the clock (at nighttime that is) to get up and feed her.  But one day that I was thinking about tonight was a day we were sitting around on a Sunday afternoon just playing with her and as I remember it was getting close to time for her to eat.  She let out a little “waaaahhhh,” and I do mean a little one, and I looked at Jeff and said “she’s pitching a fit.”  Well, I know you had to have been there, but it was so funny and so special.  She hadn’t really pitched a fit before, and even though this was just a little cry, we knew it was one of her first of many fits and she was hungry.  It made us smile and happy all at the same time!

Her first graduation….

With graduation upon us, I came across this picture and thought it’d be a good time to share this one.  This was her Kindergarten graduation picture that I just loved!  They took the pictures and the kids did the artwork on it and signed their name and gave them to us for Mother’s Day.  I was very proud of her and can’t believe here we are at her Senior graduation.  She was very happy about it as you can tell.  We didn’t know how she would do that year, but she got through it just fine.  I had even decided to hold her back and not send her.  Turned out it was a good thing we did go ahead and send her.  She loved it.  It was hard seeing my “little girl” that I was so worried about got off into the big world of school.  But it sure didn’t bother her one bit.  She’d go in with no looking back and enjoyed all of it.  She’s just as proud of the upcoming graduation and even invited someone from church to her party just this morning.  Now we have not even planned the party, we just know we are having one, but she’s already working on inviting people.  I guess I’d better get those plans going for sure!  Congratulations Savannah!  You’ve come a long way!

Eye patching………..

One of the first things I noticed after all of the testing and questions when Savannah was born, was that around 18 months of age one of her eyes started turning out.  So when I took her to the doctor and he did his whole examination, including her eyes, I finally told him I had noticed it turning out.  He checked it again and said yes I was right (imagine that, twice I was right), and referred us to a specialty eye doctor.  So after that doctor checked her out, he advised us to try patching first.  So for several months we did.  We’d patch her good eye and that was supposed to strengthen the other one and help it to not turn out.  This picture was her at around a year and a half.  She was still so small at that time.  She did pretty good with the patching, but did get really good at jerking it all off.  So finally he decided surgery was the only answer.  She had the surgery, where they went in and corrected both eyes.  So then it was like they over corrected them, which was on purpose they said, and she turned in a little.  But that worked itself out and she did have to go in glasses for a year or so and that fixed that.  She was able to be out of glasses for several years until they noticed her vision was starting to actually be bad.  Now she has really bad vision but refuses to wear her glasses, claiming she can see just fine.  Now as I’ve mentioned in another post, she can’t see the clock on the cable box, but she can see just fine.  She’ll stand right next to the TV, but she can see just fine.  But it is amazing at the things you think she shouldn’t be able to see and yet she sees it fine.  I don’t understand.  But the doctor’s office for her last check-up he just laughed after she had her vision screening and said yes she needed to wear her glasses.  So now I need to make her a new appointment and get new glasses and pray she’ll wear them.  I’ve heard of several kids with this syndrome having to have this surgery for the same reason.  I’m not sure why, other than just the fact that their muscles are weaker.  For years after the surgery her eyes wouldn’t turn at all unless she was sick or very tired.  I think it’s been years since I’ve noticed either of them doing that.  Maybe we’ll think of some great way to get her to wear her glasses when I get them for her.

Another graduation pictures……

Here is one of her main graduation pictures.  I think they all turned out really good.  She liked them also.

Senior 2011

Well it’s almost here.  Graduation.  The thing we’ve been waiting on for years.  So I thought I’d post one of her many pictures,  I will post another one too.  I was very proud of her pictures.  I know I’ve already talked about it, and probably will again because for her it’s a big step in her life.  She’s ready to be out of school.  She’s been doing really good lately for the most part, but it’s still a struggle.  From the getting up and getting on the bus, as mentioned before, to having to stay in her room because it’s too hard to go outside or even to the gym for P.E.  She tries to be very helpful and can be, but sometimes that gets her in trouble.  Who knows how next year will go, but I believe God will work it out for her.  Something good will happen.  School has overall been good, all the way back to when she started Kindergarten until now.  Mrs. Black, the Principal at Sumiton was wonderful with her and helped us out a lot.  She had really great teachers there too.  She had great ones in Junior High and now at High School, but I think her behaviors just got more challenging and made things a little more interesting to say the least.  But for the most part everyone has been great at working with her, helping her out and I’m very thankful for that.  Most of the times if we had any problems with anything it was usually just a lack of knowledge thing.  You sure don’t get trained at how to deal with Prader-Willi Syndrome and I’ve learned over the years it can take a while for people to really grasp just how this works with the eating part of it.  From people still wanting to give her more, or thinking we don’t feed her enough, to just thinking they know a better way when in fact maybe they didn’t.  Not that I don’t appreciate and listen to any helpful ideas, believe me, but it’s just usually a misunderstanding that we have to work through.  That’s been true for people in school as well as family and friends.  But we’re almost there.  Less than 2 months now and that’s hard to believe.  Thanks to everyone that has helped with her during this years of school!  We appreciate it very much!