Payton's blood pressure has been giving her trouble for the past three weeks, but we've increased it again and hopefully this will do the trick. With this last increase, she's maxed out on this medicine, so I guess if she has any more trouble they'll start her on another medicine. Seems like that is really common in children with ws.
Payton's latest fascination has been Wii Music. Actually, all of us have had a lot of fun with it! Payton gets to direct choirs, bands, play a ton of different instruments, etc. She loves it! And, is actually pretty good at it :)
The other amazing thing Payton has done lately is put her head under water! I can't tell you how much private swimming lessons have helped her this summer. She now holds her head under water for a couple of seconds and Bob and I are beyond shocked. We're so proud of her!
The kids have had a really great summer so far. Koen LOVES jumping on the trampoline and riding his trike and Payton is usually chasing butterflies or trying to catch lightning bugs :) It's so neat because Koen really wants Payton to do everything with him. He can't say 'Payton', so he calls her 'Mimi'. With a little encouraging, Payton will generally end up doing what he asks her (like "mimi, jump?" "mimi, swimming?"). It really feels so good to see them doing things together.
Honestly, Bob and I could not have asked for a better summer. Things have fallen in to place really nicely. And, even when the bumps hit (like the past three weeks with an aggressive, sleepless little girl) we know there is an explanation....something has made her nervous/anxious or her blood pressure is up. Yes, the blood pressure does make me worry what's going on in that little body of hers but I'm so happy for some answers as to why sometimes her behavior is so aggressive. Thankful, thankful, thankful. :)
Thursday, July 30, 2009
Wednesday, July 15, 2009
Pictures and an update
Tractor in hand, football helmet on - can't get any better than this :)
Kiss for Koen :) 
Real quick update.....Avery made it through surgery and was sleeping sound yesterday evening. Hopefully her mom was able to get some much needed rest. Claire has her surgery for her aneurysm today - could be a 3-6 hour surgery. So, keep them all in your prayers today.
I've got a call into the nephrologist on Payton's blood pressure - so hoping to hear back from them real soon. Payton has managed to only have one potty accident this week - so we are making headway in the 'accident' department! YAY!! She has gotten a lot of cheering on from us :)
Saturday, July 11, 2009
More prayer requests
Please continue to keep Avery in your prayers.....looks like she will have to have a pacemaker. Also, keep Claire in your prayers as she has surgery for her A-V fistula next week.
Friday, July 10, 2009
Blood Pressure
The past two evenings Payton has been very very emotional. Wouldn't you know it - her BP is back up. I imagine an increase in meds is coming her way. Funny how their little bodies adjust so quickly to the medicine, isn't it?
Well, Koen's behind me yelling "hut! hut!" with the football.....so I better get :)
Well, Koen's behind me yelling "hut! hut!" with the football.....so I better get :)
Tuesday, July 7, 2009
Sunny
The sun has been shining bright on the Littlejohn house lately. We had another fantastic week. Meltdowns after transitions have been few and far between. When she does have one, we ask her to go to her room and she usually goes willingly to get herself calmed down. Bob and I just kind of look at each other like "is this really happening?". I'm so proud of her and how far she's come.
She spent a couple of nights with Bob's folks last weekend and Bob and I were both dreading the few days after her return. Generally they are filled with giants sobs and an inability to cope with anything. This was not the case this time and makes us realize there is a light at the end of the tunnel. Even though we've been told this would happen and she would begin to understand more, it doesn't seem like it will ever happen when you are going thru it.
Once we picked up Payton and Koen after being gone for a couple of nights, I sat in the back seat and watched Payton stare at Bob for nearly an hour and a half trip in the car. Not just a typical stare, but a stare that looked like she hadn't seen Bob for years. She was studying his face and asking him to smile a certain way. I've never seen anything like it. It was almost mysterious, like she was memorizing every freckle, every crease. In articles, I've read about babies with ws....how they look more at faces and really gaze. Payton did that as an infant, but this is the first time I've seen her do it this much lately. She had me mesmerized.
Life is simple at our house. We spend nearly every evening at home - usually outside. Koen is typically riding his little three-wheeler, playing baseball, or swimming while Payton is usually sitting at my side using her daddy's iPhone to listen to different train signals. I sometimes get sad that she's not up and playing with her brother more often, but the sound of train signals for some reason is something that really makes her happy. And it also seems to help her relax - just sitting there doing her own thing. I'm sure some would call us quirky, but we are enjoying our peaceful evenings - even if it does include train bells :)
Sleep actually exists at our house now! Just going on mother's instinct, I believe the major cause of Payton's sleep issues were blood pressure. This past weekend she was complaining of her eyes hurting (which for her, is the clue that her blood pressure is up) and sure enough, her blood pressure was high and her sleep (and behavior) was 'off'. On one hand I am so happy she is feeling better and sleeping better and on the other hand, I feel sad for her that for five years she was miserable and we just couldn't get a good reading to know why. But - I can't think about the past....I'm just so incredibly thankful she feels better now!
Before I sign off here, I just want to ask you to please keep Avery and Michaela in your prayers. Avery is recovering in ICU and Michaela had an MRI last week. I know their families could use all the support and prayers they can get.
She spent a couple of nights with Bob's folks last weekend and Bob and I were both dreading the few days after her return. Generally they are filled with giants sobs and an inability to cope with anything. This was not the case this time and makes us realize there is a light at the end of the tunnel. Even though we've been told this would happen and she would begin to understand more, it doesn't seem like it will ever happen when you are going thru it.
Once we picked up Payton and Koen after being gone for a couple of nights, I sat in the back seat and watched Payton stare at Bob for nearly an hour and a half trip in the car. Not just a typical stare, but a stare that looked like she hadn't seen Bob for years. She was studying his face and asking him to smile a certain way. I've never seen anything like it. It was almost mysterious, like she was memorizing every freckle, every crease. In articles, I've read about babies with ws....how they look more at faces and really gaze. Payton did that as an infant, but this is the first time I've seen her do it this much lately. She had me mesmerized.
Life is simple at our house. We spend nearly every evening at home - usually outside. Koen is typically riding his little three-wheeler, playing baseball, or swimming while Payton is usually sitting at my side using her daddy's iPhone to listen to different train signals. I sometimes get sad that she's not up and playing with her brother more often, but the sound of train signals for some reason is something that really makes her happy. And it also seems to help her relax - just sitting there doing her own thing. I'm sure some would call us quirky, but we are enjoying our peaceful evenings - even if it does include train bells :)
Sleep actually exists at our house now! Just going on mother's instinct, I believe the major cause of Payton's sleep issues were blood pressure. This past weekend she was complaining of her eyes hurting (which for her, is the clue that her blood pressure is up) and sure enough, her blood pressure was high and her sleep (and behavior) was 'off'. On one hand I am so happy she is feeling better and sleeping better and on the other hand, I feel sad for her that for five years she was miserable and we just couldn't get a good reading to know why. But - I can't think about the past....I'm just so incredibly thankful she feels better now!
Before I sign off here, I just want to ask you to please keep Avery and Michaela in your prayers. Avery is recovering in ICU and Michaela had an MRI last week. I know their families could use all the support and prayers they can get.
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