Wednesday, September 22, 2010
Last week we were on a blood pressure roller coaster, but it seems to be doing better this week (YAY!). She has quite a nasty cough so I'm sure that's what was causing the increase. Funny enough, the bp usually increases before we see outward signs of an illness...then sure enough, she has a cold or something and that's why the bp is up.
This week we've had a heck of a time with Payton's hygiene in the bathroom. At home I don't let her go by herself (unless of course she sneaks away from me and gets in there without me - in which case I usually have a huge mess to clean up). The past two days she's done the same thing at school. She has had quite the smearing contest all over herself and I've had to take her different clothes (she even had it in her hair!). Anyways, I believe the problem lies with the prolapse. She has that sensation when it comes out that she still needs to go to the bathroom so she is trying to 'help' it out with her hands. It's just been a mess - and I feel sorry for the nurse and janitor for having to clean it up. I've got a call in to the doctor to see where we go from here - I feel sorry for her having to feel that all the time....but without a major surgery there's really not much we can do I don't think. It sure makes Bob and I uneasy though.
Payton's been working really hard on her writing - she still has issues with her letters; one letter may be giant, while the next one is small and the letters will never be within the lines. I know most of it is her visual spatial difficulties, but she's working and listening to instruction on it, so that's a plus! She's also trying to learn to read. Bob and I have been so proud of her....even with her ADD she is able to be kept on task for a short amount of time :) Because we've been working with Payton so much, Koen wants to work on it all the time. I've got polar opposites. Koen wants to learn and Payton could care less. It's quite comical to see Payton try to wiggle her way out of going to school :)
After school my dad (or her cousin, Tanner) keeps Payton. This way she can at least be home or at her aunt's house to re-group-which is oh so important for her. She's managed to do some destruction (paint my piano keys with a green marker - three lines up and down them) and paint herself with nail polish - but it's nothing that can't be cleaned up. We still have to watch the girl 24/7 or she will get into something. I've just decided because she has no clue how to play unless someone is 'showing' her how to play or entertaining her, that's just how she entertains herself. I've learned to laugh it off at the end of the day!
Koen is growing by leaps and bounds and loving all the football games. He has so much fun watching the games and playing with the boys older than him in the end zone-it really is a joy to watch him play so care free.....the things we don't take for granted anymore :)
Here is a wonderful blogpost from Teresa on inclusion. Although it's easy for me to say things are going well for Payton in school, it really is a trying and exhausting time. I thought Teresa did a great job walking thru the emotions: http://claresjourney.blogspot.com/2010/09/mainstreaming-is-not-for-wimps.html
Monday, August 2, 2010
Last week she and Koen got to enjoy several days with my mother in law. Wanda came to our house for a few days to keep the kids while Bob and I were at work and my kiddos loved every second of it. Wanda got to see Payton's obsession with phones - ending the visit with a call to 911 and a police visit to the house. The policeman tried to explain to Payton what a 'real' emergency is (Payton likes to call when anything is wrong - her bike is broke, her phone is broke, mom and dad are going the wrong way to church, etc). So, sadly this is not the first time Payton has called. I'm sure the policeman thought it would help to talk to Payton, but sadly it only feeds Payton's obsession more because she LOVES policemen. So, a visit to our house was exactly what Payton wanted. hehe.
We are on the countdown to school now....just a few more weeks. I am so ready for Payton to be back at school and in that routine. I know it will help her a ton! Scary to think next year Koen will go to preschool. Where does the time go?
Monday, July 26, 2010
Tuesday, July 20, 2010
Once up to our rooms (we got an adjoining room with my mom), I told my mom it was really emotional to see a hotel full of children and adults who are fighting the same battles as Payton - the same health problems, same behavior issues, etc. It felt like one big happy family. We were home.
The sessions were wonderful-my favorite part being the interaction between parents and learning how similar situations were. Hearing specialists speak about anxiety and sensory issues and give suggestions......you can't really put a price on it. Because of that, we will be making some changes in Payton's IEP to get a sensory diet and even work on replay for her anxieties (at home and at school).
One of the sessions my mom and I attended was for the siblings of special needs children. I focus a lot on how things affect Koen. Obviously, he knows no different now, but I fear he will one day question all the focus on Payton (her doc appointments, mtgs at the school, and just the extra time she requires compared to him). It was nice hearing some of the parents talk about how their typical child feels - for instance, how they feel they've missed out on having a typical relationship with a brother or sister. Ofcourse most parents say this thru tears because it is painful, but how wonderful to know we all share the same concerns and fears. They even gave suggestions on how a four year old child may explain to his buddies who ask "what's wrong with your sister?" and each year how the description will change as the sibling gets older. But on the flip side it was wonderful to hear the opportunities the siblings have - such as meeting new people they never would've met (at conventions), what a great sense of humor they acquire, how mature they become, and how they are inspired by their brother or sister with special needs. The sib session was one of my favorites.
The session on anxiety was wonderful as well. One key point I learned was how long it takes the body to recover after an experience that is frightening (in Payton's case it could be a fire alarm or a train whistle-depending on the frequency of the noise) and reiterating how truly painful hyperacusis is. Once the anxiety/panic attack happens it takes her body four hours to recuperate and get the hormones back down to a normal level for her. I had no idea it took this long. So-telling her "it's over, it's fine, don't worry about it anymore" doesn't really do any good for her. She can't help it (which is good to know because we really struggle with her behavior after those scenarios-it's good to know the reasoning it takes her so long to get back to herself). And-even better to know that so much of it is neurological and she really can't help the way she reacts. I have always assumed her systems are more fragile and it was nice to have a professional confirm this and remind us to be compassionate.
And then ofcourse the stimming. I've never really thought of stimming as anything other than spinning wheels or rocking, but I was shocked to realize that when my daughter is talking about trains nonstop or sitting on youtube watching trains she is in fact stimming. The OT and ST recommended not taking these things away from her, but in fact using them as a reward or limiting the time ("You have two minutes to tell me everything you know about trains but then we have to get to work" or "you can take all your phones to school with you so you know they are safe, but they have to stay in your backpack" or "If you have a good day you can print a train off").
We do plan on having an evaluation at CMH in Kansas City with an OT (referred by Noel, so I know she's good!) to get us a sensory diet set up for Payton and then the school will have on paper what she needs to keep her from getting so overstimulated. I've learned Payton has sensory over-responsivity. She needs sensory integrative therapy, a sensory diet at home and at school to facilitate optimal alertness, and may even need to use the Wilbarger Protocol (brushing). What is so wonderful in learning this is that we can now understand why she responds to sensory messages more intensely, more quickly and for a longer period of time. Another great thing to know is why in the world Payton is soooooo loud but yet can not tolerate loud things around her. The OT said a lot of times people with hyperacusis are the most noisy because of middle ear musculature. Intriniscally, a child can modulate ear muscles when noise is being made by him, but when it comes from the environment around her, she is in severe pain. She reminds us we need to respect that for Payton and realize she can't just get over it. It also explains why she is so easily distracted - she is hypervigilent of any sensory information coming in. We also plan on getting a velcro chart so she can visually see what needs to be done each day (for getting ready in the morning, using the restroom, etc). She knows what she is supposed to do, but her focus is so bad she can't focus long enough to do these things properly (using the restroom is a big problem for her). They have a 'door buddy' that she can take to the restroom with her so she can see each step and hopefully follow them in sequence. We really do have hope these changes will make things easier for her and then ofcourse it makes it easier on the household.
Then there's the session on preparing financially for your child's future. Bob and I have a lot of work to do in this area. I was unaware of a lot of things mentioned in this session - it's too bad the laws are set up the way they are for special needs individuals. My brain was fried after this session, but at least we now have an idea of where we need to go and what we need to be doing.
The greatest part of the convention was meeting the wonderful ladies who have been a huge support to me the past few years and of course getting to see the ones I've already met in person but rarely get to see. It was amazing to see them in person and I can't wait to see them again in Boston :) I'll try and add some pictures soon - I do have them posted on my facebook page, though. For anyone who has the opportunity to go to the convention in the future, I highly recommend it. Not just for the information, but also for being around the family of individuals who understand everything you've been thru. AMAZING!
Tuesday, June 22, 2010
Tuesday, February 9, 2010
Payton doesn't seem to care for school too much - she says it is sooooooo long, however anyone that sees her at school says she always has a smile on her face. Which, ofcourse, puts me at ease. They're still working on her fine motor skills and strength - she just really doesn't have much upper body strength. That's their biggest concern right now, so she will start going to the hospital for OT sessions once a week. She's excited because she gets to ride in the hospital van with the special education teacher (eventually a para will take her)....but more than anything she loves the hospital because of the treadmills. We're anxious to see how her focus is - we have a feeling she'll be way preoccupied with those treadmills. Behavior wise she does well for them at school. She did get the lowest score possible on controlling her verbal impulses, but that is expected with her. Even in church it's not unusual for her to just yell out "I LOVE PIZZA!" or whatever is on her mind.
We're having issues with her blood pressure again - running around 138/76 of an evening so we are working with the nephrologist to try to figure out what to do medicine wise. She currently takes her three medications at 7am, 10am, 2pm, 5pm, and 8pm.....so I'm guessing she may need to add another one in the mix somewhere. Ofcourse, I want to get it regulated before we go for her pre-op appointment Feb 25th and surgery March 4th (dental).
Koen's healthy as a horse. All we ever have with him are ear infections (we're treating one right now) but we don't think we're going to go another round of tubes. It would be his 3rd set and we really would like to see if he's going to start outgrowing it.
Koen and Payton are really starting to play some together and it's such a joy to watch. Payton doesn't play a whole lot, but when she decides to they really play well together. Koen is so patient with her and he really does make my heart melt. God really has blessed us. I don't know what in the world I would do without my kiddos.
Wednesday, December 23, 2009
Payton has become the greeter and the entertainment of the hospital. No one can walk by her door without her yelling "Hello!" or "Come on in!" and if someone does come in, they get the question "Where's my present?" Yikers :) I was concerned about her getting the breathing treatments because she hates her brother's nebulizer (the noise) but it's so much quieter it hasn't even bothered her. She usually ends up coughing so much she throws up when she's having a treatment, but she's done fantastic with it!
The nurses are shocked how well she can swallow her pills and take her liquid medicine, and usually are so good to her that they receive a "Aahhh, you're so nice" or "you've been good, you're going to get presents!" before they leave the room. She is loving the socializing in this place! She is also loving the warm blankets they can give her at the drop of a hat (instead of having to put it in the dryer like we do at home and wait a bit for it to get warm).
The only time she's really given us any trouble is when she is ofcourse tired at night or when she passed by the physical therapy room and saw all the treadmills. She has quite the obsession with treadmills and she gave us quite a meltdown over it. Eventually, she and Bob went and watched the treadmills for about an hour while other's were having their therapy. Thankfully the nurses allowed her to do that, otherwise I'm not so sure she ever would've calmed down about it until she went to sleep.
Right now she is sleeping peacefully and we're hopeful she'll be checking out tomorrow - just in time for Christmas! However, if not, the nurses have reminded her there is a chimney here and that Santa will find her. Much love to all of you and I hope you all have a very Merry Christmas!