Tuesday, April 29, 2008
I still hear the comments "Oh, Payton will be the first doctor who has williams syndrome - you just watch!" "She's so smart, she must have a mild case". As much as I would LOVE to believe these statements, as Payton grows I feel like her delays are becoming more apparent - and maybe even more widespread. She is doing so well speaking - but her communication/receptive language is still quite delayed. I still don't understand why when she's hungry she won't just ask for something to eat. She goes into meltdown mode - I wish she would just communicate to me that she's hungry. This week just seems to be full of a lot of heartache.
Sunday we attempted church again. Sunday school always goes very well - and I am thankful for that. This Sunday I got out of my class earlier than Payton's (very unusual), so I was able to watch her thru the window. A teenager was helping Payton with the activity they were doing...I guess I should say 'trying to help Payton'. Payton was standing up so I would've guessed she would've been very active at this point....instead she was spaced off, mouth open - in her own world. She does that when she is either overstimulated or overwhelmed. Seeing her face like that kills me. Heartache.
Then, on to the worship service. I keep trying to take her - thinking eventually she will have a good experience. And, I do try to pay close attention to see when she's about to lose it or see when she's had enough. Payton was nervous as soon as we sat down, so I tried to sidetrack her with goldfish crackers. It worked for a second, but then the choir started to sing......there's got to be something about the organ and the piano. She screamed at the top of her lungs and covered her ears. We bolted out as fast as we could. It's obvious it hurts and I hate it for her. Heartache.
On to this morning. Preschool signup. I was told I needed to get there early....there's always a huge waiting list. Sign-up started at 8:30, so I got there about 7:30. I sat in the car for a while watching the children enter school - parents drove up to the door and out jumped the child. I found myself trying to picture Payton going into the school by herself (ofcourse, I pictured her just wandering off, doing her own thing)....and what about getting her tray for lunch? I can't imagine her being able to carry her tray by herself.....and on the playground, that's an even scarier thought. Oh - and the school bell (now instead of a bell it almost sounds like my alarm clock)...I hope they give her some type of warning before it goes off every day. I got out of my car and went in the school - got my number (good, I'm 5th in line! That means she'll have her spot!). Finally 8:30 arrived and I gave them all of our information. Payton will be in the three year old class (three year olds go in the morning, four year olds go in the afternoon). I got the name of her aide - and along with that came wonderful praise for the aide (whew!). I got back in my car, sat down, still suprised at the emotion I feel for putting my almost five year old in a three year old class. Heartache.
Wednesday, April 23, 2008
Payton's language is still exploding. She is full of "Can I help", "I love you", "What your name?" - it's just amazing. She is also beginning to interact with Koen more (last night they spent quite a bit of time in the sand box together and she is even asking if Koen will swing next to her now). Last Friday I had taken her to a new doctor and I told her his name before we'd gotten there because she loves to know people's names. When the nurse came in Payton asked "You Dr. Alden?" The nurse laughed and said "No, my name is Barbara". Payton said "Hi Barbara!". Soon, when the doctor came in, Payton said "Hi Dr. Alden!" Ofcourse Dr. Alden told her hi and then Payton looked at me and said "What his name?" It's her favorite question in the world - even if she knows your name, she'll still ask you. And ofcourse, as we left the office she said "He's NICE!". Seeing her do this with people and work her charm puts me in awe of her. Anywhere we go she is saying "Hi" to everyone, asking their name, and basically just making herself at home. I don't think she's going to know a stranger...the other day my mom had taken her to my nephew's ballgame and Payton walked up to a gentleman on the bleachers and asked if she could sit by him. Mom said she kept scooting closer and closer and just kept staring at him (boy, these kiddos love faces!). Anyways, my mom told the gentleman that Payton doesn't know a stranger and he said "well, that can be good but can also be bad". He is so right about that, but right now I am so thankful to see this personality coming out of her. In the past she really kept to herself and didn't pay attention to the people around her - I feel like the world was just confusing to her. And, I know I will never completely understand her world - but we sure are enjoying watching her grow, learn, and understand things better.
*****I had to come back and add to my post....a big ole 'congratulations!' to Camille for hearing her son say "Ma" today. She's waited two and a half years to hear that word and there's nothing like it in the world. I'm so happy you finally were able to hear Connor say "ma". We're celebrating with you, Camille!
Thursday, April 17, 2008
I walked by Koen's room yesterday morning and thought to myself that I needed to buy a new bouncer seat for the baby. The seat Payton and Koen used is worn out and we needed a new one. I keep forgetting I'm not pregnant anymore. Strange, isn't it? I mean, I know I'm not pregnant, but for a few split seconds I forget. Waves of sadness still come over me at unexpected times and I keep trying to push the sorrow back, but I know I can't keep pushing it back. The healing just takes time but the "what if's" are still there. And, ofcourse the guilt.
As I say this, I know if everyone threw all of their struggles and sorrows in a pile, I would still pick mine back. Others are going thru so much worse and I believe that God has equipped me to make it thru this sorrow and through Payton's diagnosis. Sometimes, I ask Him if He really thinks I'm strong enough, though.
I'm not sure what's going on with Payton but we've been having trouble getting her to sleep at night. She typically takes 3 melatonin tablets and usually goes to sleep around 9:30. At the beginning of last week she started staying awake until 11:00 and so I decided to up the melatonin to 4 tablets (thinking she had gained enough weight she may need more). Sure enough, still up til 11:00. Last night I decided to up it one more time to 5 tablets and finally she was asleep at 11:30. She's obviously not having any problems with this - she's got energy and is happy in the morning.....but I'd like to see her asleep by atleast 10:00. Heather's post about Caleb singing KISS songs at 4:30am cracked me up! And - showed me that this is all just beginning for us - and before long she will be waking us up in the night singing. :)
Monday, April 14, 2008
On Friday I had an IEP meeting with two of Payton's therapists (I wanted to reschedule - but knew if I had an appointment I better keep it, cause you never know how long it might be before we can get another meeting set up again). She had recently had an OT evaluation and they were needing to add in another 30 minutes to try and get her caught up some. She scored in at 28 months - over a two year delay - which did not suprise me at all. Watching Payton try and do simple things with her hands reminds me of watching the special on Good Morning America of a young man with WS trying to put paper in an envelope. He struggled with it and his hands couldn't do what he wanted them to do. That's exactly the way Payton's hands work. They're also concerned about her sensitivity with noise and her visual-spatial problems. Right now, they're trying to do some catch up work to get her prepared for the 3&4 year old preschool class next year. I spoke with the therapists to make sure they both agreed that the younger class is what is best for her and they both agreed. They said her size wouldn't affect her fitting in with the class - sinc she's so small for her age she wouldn't be towering over them....they'll think she's 3 years old. So, it sounds like a good fit for her and it will be nice for her not to be overwhelmed with everything. Thinking about her going to kindergarten scares me to death. Her therapists right now are concerned that going a full day at school will overwhelm, overstimulate, and exhuast her. I picture Payton adjusting better than what they think.....but I also picture Payton swinging ALOT to make up for being overstimulated!
To end this post I just want to thank you all for your kind words this past weekend. If it weren't for you all and my family I don't know what we would've done. My mother-in-law, grandma, aunt, parents, and sisters were calling almost every day to make sure we were doing okay and that really meant so much. I know everyone is busy - so when someone takes time out of their day to call it means a lot. We just really appreciate all the thoughts and prayers.
Friday, April 11, 2008
Because of losing Kayden and remembering how awful it was to see my son on an ultrasound -no longer moving, just laying at the bottom of my uterus, floating- I tried to decide whether to look at the ultrasound screen or not. It took me a long time to get the sight of Kayden just laying there on the screen out of my head. Anytime I saw a new baby for a while, that's what I thought of. Dr. Clark finally was able to get the machine and as soon as I saw the screen, it took me straight back to Kayden. No flashing little heart, no movement. They sent me to another room to get a more in-depth ultrasound just to be positive (the machine they move from room to room isn't that great....) and the tech confirmed it. From that point, they asked if I was alone, if I needed them to call anyone, etc. I just felt numb (and felt sorry for them for having to watch me fall apart). Isn't it strange how when you miscarry a child you feel like a failure? As you're looking at your lifeless baby on the screen you just lay there and tell your baby you're sorry....
They scheduled me for surgery on Saturday morning. I haven't had to go this route before. With Kayden I was far enough along that I had to deliver him. It provided me closure because I got to see and hold him, so I was thankful for that. It will be strange this time, I think, to not have that closure. One always wonders why things like this happens. I hope more than anything that whenever someone I know either miscarries a child or has a special needs child that Bob and I are able to reach out to them and be there for them.
This is a song that I listened to a lot after Payton was diagnosed.....and continue to listen to it when things like this happen. For now, I have two beautiful children here on earth with me and two children born safe in the arms of Jesus.
Monday, April 7, 2008
I got a call from the special ed coop this morning. We are in the process of getting Payton signed up for preschool and we were trying to set up appointments to go over her recent evaluations. It was kind of a rough morning because they told me they thought it would be best if Payton was in the class with the three and four year olds instead of the five year olds. Now, I'm sure it seems strange that it was kind of a kick in the stomach because I know Payton is delayed. I think it just seems more real the closer I get to school. Her therapists just feel that she is delayed enough that by putting her in with five year olds she would completely take herself out of the situation (she spaces off and goes into her own world), she would act out, and she would be completely exhausted. She'll still go to kindergarten the following year, but they'll do modifications for her. I think normally this would've just brought me to tears but because of the fantastic weekend we had with her - and her personality showing through - everything seems okay.
On to my next news, much to our suprise Bob and I are going to have another baby. After we had Koen we felt our family was complete but obviously it wasn't! I am finally out of the first trimester and am feeling so much better. I think my days of being dizzy, draping over the toilet, and needing fluids are in the past. I'm so thankful I'm not sick the entire pregnancy. I feel sorry for the women who go thru it for that long. I think Bob is happy to have his wife back - helping with the laundry, helping clean house, able to help more with the kids, etc. He could tell a major difference in me this weekend and I am so happy to be feeling back to myself again :) It took a while for it to sink in for us, but once we started telling people everyone seemed so excited. The comment most often said was "That's so great.....it'll be wonderful for Koen to have help taking care of Payton when you and Bob are gone". It meant so much to me that people we barely even know cared that much about Payton and Koen both. So, with the added addition to our family we decided it'd probably be a good idea to sell our house. The house we live in is pretty good sized, along with a swimming pool, and about 3 acres. I found it difficult to keep up with everything last summer with the age our children are....adding one more child to it I'm not sure we'll be able to keep up with it at all. I realize in the future when our children are older we would love having all of this space - and if we don't get the house sold, then it's ok....we'll end up enjoying it. When they are older, we'll eat it up! But for now, we're going to try and sell it. Payton doesn't like the pool at all (she can't keep her body temperature up) and Koen would prefer to just be in bathtub or a baby pool. We'll see what happens, but for now it looks like there may be quite a few changes ahead. Just another baby to love!