Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

Decisions

Kim Nothdurft

1 comment

August 8, 2009

I decided to go ahead with the replacement of the VNS. I think it is one of those “don’t know what you have until it’s gone” knowing that it is off and has been for awhile now I think it helped her with some of the seizures, but also with alertness and hopefully a better “tude”. Lately the little miss is just all over the place, happy then sad. It’s hard to keep up with. And man she cries and loud. And all through the night.
Not sure what we are going to do on our family vacation to Disneyland. I don’t want her waking everyone up all night long, but I also rather not give her the Valum. I swear if she gets it at night she has more cluster seizures the next day. Not sure if that is possible, but I swear it to be true.
I just think maybe it is this enormous growth spurt she is going through right now, it is making her off balance in every way. But seriously if she is this moody at almost 7, I cannot wait for 13.
She still has a LOT of myoclonic jerks and they really make her upset. I don’t know what helps those. It’s so annoying we stop the grand mals that ruined her day, but now she jerks and drops all day long which piss her off which in turn of course ruins her day.
Have I said it today? I HATE SEIZURES!
On to the others, Andi Jane had 3 fillings the other day and did really well. My wallet is empty but she did well and I don’t think she will be afraid of the dentist the rest of her life, more like the opposite. I think they shouldn’t make fillings, that fun. When I tell her she will get cavities if she doesn’t brush she says that’s ok that was fun. She was pretty goofy on the laughing gas. She told the dentist she had been waiting for that appointment all year long. They said she should get out more often. LOL.
Oliver is good. Not only speed crawling, but pulling up on things. AND babbling. Thank God! I wouldn’t care if he didn’t crawl until a year as long as his speech were on target. Speech is just so huge and it is the hardest part of dealing with Lily, the lack of communication, so to hear those so important first steps to language, sure takes a huge load off my shoulders. Thank God!

Itchy Itchy

Kim Nothdurft

1 comment

July 28, 2009

I’ve been meaning to update and well the floor needed mopped, the carpet vacuumed, the dishes washed, tivo to catch up on, watching 16 (!) two year old at church w/ one other adult, and it’s not like I’m “working” from home, I am truly and really working from home. Nap times give me just enough time to do each task I need to get done and doesn’t leave me much time to blog. Oliver is NOT supposed to be crawling and getting into the dog dish and trying to figure out a doggy door. I shouldn’t be baby proofing the outlets with a 5 month old. He is busy and wild and usually up to no good. He makes Andi look easy. But he plays hard and sleeps hard and for that I a grateful.

So Lily, Lily, Lily. Lily has been doing well in her therapies, LOVES when PT is in the pool. She has been riding the pony well. She loves music. School started yesterday but she did not go because after all her therapies she had wheel chair clinic. It was in Phoenix and the whole family went. The van’s a/c is not awesome so it was a long hot ride, it has been extremely hot here, like 115 hot and that whole “dry heat” thing is a crock, it is ridiculous hot and annoying. It is hard to be in a good mood while out and about. The w/c clinic agreed it is time for a new chair and they got her measured for a new one. We are very excited for this! She needs a new chair!

So Sunday Lily had a weird spot on her arm. I ignored it because she always has red bumps, she has sensitive skin. Then I saw one on her chin, so then I start to look some more and lift up her shirt and she is covered in red marks. I call my sister she says give her benadryl and after awhile they go away. Phew that was weird. Anyway, everyone goes to bed. I get up with Oliver at 1am and while nursing him I hear Lily cry. I finish feeding, put him back to bed, go into Lily’s room and she is covered completely with those red spots, different places but same type of things. I wake up Andrew he say just give her benadryl. I do. She is crying again, I go into her room and she is having tons of myoclonic jerks. So many I have to give her 1/2 a klonopin to get them to stop. She is knocked out. I go back to bed and check on her at 7am. She is up and clear. Phew all gone. Lily has OT/Speech and Music and during music her knee starts to break out again. Then her other leg, and arm. I call the Dr. I don’t want to keep giving her Benadryl, they say come in after w/c clinic (we have been waiting month for w/c clinic apt, I didn’t want to miss it). While we are at w/c clinic (1pm) the child looks like a leper. Everyone there was very sympathetic and itching their own skin just looking at her. But I didn’t give her Benadryl and by the time we made it to the Dr. (3pm) they were just pink and almost gone. That pretty much proved the Benadryl didn’t do anything these things are just coming and going in cycles. Dr. said it could be a virus she is allergic to. I can try walnuts again later to see what happens (I had thought maybe that was what it was), he said we may never know what it is from and it could last anywhere from 4 days to a week. Sigh! This kid always has weird stuff!

I was proud though that she was scratching her tummy. That took a lot for her to recognize that her belly itched and to put her hand where the spot was and itch it. I know what us special needs parents are proud of… crazy.

Anyway I did send her to school today with a long note to the teacher and I haven’t had a phone call yet. I am sure she will have another break out since I noticed she had one last night. But she is in good spirits, no fever, no upset so I figure she can go to school, she gets pretty bored at home.

Well baby boy is crying for me to pick him up. He may act tough but he is still my mama’s boy 🙂

Here are a few pictures of Lily, I will post some on flickr as well, so she can get some sympathy. ;0

Unspoken Truth

Kim Nothdurft

1 comment

July 19, 2009

There is something no one tells you when you have your third baby. I know when you have your second you worry “can I love another child as much as my first?” everyone reassures you that yes you can, you will be surprised at how easy it is to love that second baby. So when that comes true and you realize yes I do love my second as much as my first, you think the third will be no problem. If I love my second as much as my first, I will love my third as much as one and two. And you do, no doubt about it. I am not one of those people who have a hard time attaching to their children, I feel desperately sorry for those that do, that is not my problem. What my problem is the lack of time you want to put into your third and the actual amount of time you have to do so. If I didn’t breast feed Oliver I swear we’d never have any one on one time. I am so glad we do have that time. Honestly at dinner, Andi Jane often feeds him his cereal while I feed Lily. It makes my stomach turn and I am filled with guilt and regret. You constantly feel like you aren’t giving one the attention they deserve and of course neither is two and definitely not number three. It is this feeling of constantly chasing my tail. I used to remember every birthday, anniversary, send cards on time, have clean clothes for everyone, dinner on the table, but I am barely keeping one foot in front of the other with clean underwear on.
I am not complaining I am just being truthful. And wanted to brag about what an awesome husband I have who is currently away with Lily and Andi Jane in the mountains. They left on Friday (in our super sweet new van) and will return this evening. That gave me and Oliver about 52 hours of just us time. We spent it singing, giggling, eating home made baby food (him not me), browsing Target, taking pictures, giving him a bath, keeping the TV off and listening to music. His naps gave me time to clean and read magazines and keep up with my farm on Facebook 😉
Now everyone will be back in a few hours and this week is filled with therapies for Lily, gymnastic camp for Andi, dance and swim and not a whole lot of time for anything but those things, but having weekends like this (and this is the 3rd since Ollie was born) gives me the energy and the power to get through this week without the tremendous guilty feeling that one of my kids is missing out on a part of their mama.
I love my hubby for helping me be the best mom I can.

**Oliver is not only crawling and sitting but trying to pull up to stand on things! I really would like to stop all this from happening. And while he is super fast in the motor department, speech wise he seems about were he is supposed to be. I’d love to start hearning some babbling since of course I worry about that kind of stuff, but I am pretty sure he is going to be just fine. I guess you can’t develop all skills at once or he’d be super freaky.
**Went to neuro this week and he was funny. He asked why we were out of emergency klonopin wafers, since her seizures were pretty well under control and asked if I gave them to Lily for being “pissy” when I said no, then he asked if I were taking them (which he also said, “it’s ok”). Once I told them no I was not taking them I was using them for her to sleep when we were on vaca (the child is a vampire and wakes everyone up otherwise) so he gave her a script for valum and said he’d prefer her to take that to sleep. He also reassured me a lot of neuro kids sleep poorly and it is ok. AND we found out her VNS battery has died. Not sure when but we now have to decide if we want to put in a new one. I have a list of plus and minus and haven’t made a decision yet. I can further discuss this in another post. Oliver is getting into all my magazines and seems a little bit peeved about the taste of them**

This is us this weekend:

Where to begin

Kim Nothdurft

no comments

July 13, 2009

To say time is not on my side is an understatement, time isn’t even in my same area code.
I am chasing my tail here constantly and can’t get anything done.
I plea bargained with Andrew last night and let him go to bed at 7pm (yes I said 7pm) IF he would take Lily to hippo therapy at 6am this morning. I am still getting up with Oliver 1-2 times a night, so getting up for good at 5am is really not in the best interest for me or the rest of my family.
Lily had OT and ST from 9-10am, then we have a neuro apt in downtown Phoenix at 1:40pm when it is oh probably about 107/108 degrees. I asked my nieces to hang out with Andi Jane today so I don’t have to bring all three kids, but still taking the two that can’t walk or talk is not all that fun.
Tomorrow both girls have a dentist apt and cleaning at 9am. Why do I do these things to myself. I guess 6 months ago I didn’t know that I would have a sweet baby boy that actually likes to sleep and is sound asleep at that time. Oh well. I’m complaining.
I was reminded about God’s goodness last week. We have been on a search for a handicap accessible van. This is not an easy task, well of course unless you have that money tree in your back yard, we unfortunately don’t have one. So we’ve been on craigslist, we’d find something, ask the bank and get a big fat no. They will only loan you what the actual van is worth, forget about the stuff that is IN the van that makes the van worth much more. Andrew was getting stressed about it and I told him to relax, it will work out. I have been praying to God that he will lead us in the right direction towards the right van that we can afford.
After no luck on the Phoenix Craigslist I tell him to check out San Diego, just a hop, skip and jump away. He does and the skys part and the angels sing hallelujah, we see the perfect van. It is ready for us, perfect in every way. It is also as Andrew would say “pimped” out, apparently the kid who had it before had some style because this van has nice tires, entertainment and navigational system, it is perfect for our family and needs nothing. Unfortunately they wanted way too much. It is worth it, we just couldn’t possibly afford it. Andrew called to get info, had a family friend who lives in SD to check it out, he said it is perfect. Electric ramp, locks already set for the wheelchair, back row for the other kids to go. Perfect for our family! We call around and every bank says no. Andrew calls the guy and says never mind, sorry, you can sell it to someone else. A few days go by and Andrew gets a call from the guy selling the van. He says he really needs to sell asap and would like it to go to a family who needs it, we can have it if we just pay what he owes. That is about $7k less than offering price! So we still had to have some strings pulled and it I guess unless the title is in our hands it isn’t yet a sure thing, but we are pretty sure this will happen and it will happen this week. Can I get an amen?! It is still a stretch for us to do this, but really in all reality this is no longer a luxury it is a necessity. Lily can no longer be in the “weekend warrior” (stroller chair) her posture needs something more structure, hence the whole scoliosis diagnosis, she needs to be in her 50 lb wheelchair. Actually we go in 2 weeks to wheelchair clinic and she should be getting a new chair, and it will weigh far more than 50 lb.
Anyway, we should be getting a van that allows her to be in her correct wheelchair and we will be able to maneuver it much easier now.
You know from time to time I find myself screaming, “I want a new normal”, but that is just me being whiny. I really have to keep reminding myself to trust in God and things will work out. He desn’t give us more than we can handle, he helps us with what we are given.
On a totally unrealted note, Oliver is totally and completely crawling. Everywhere. And sitting up unassisted. Really? What? He was 5 months on the 5th of July?! What the heck?

Heartbreak Hotel

Kim Nothdurft

1 comment

June 21, 2009

I had to make a heart breaking decision on Friday and put down our family member, Hailey. She was about 12 and had lived with us for 7 years. She started going downhill and fast and it was the right thing to do for her, but it was one of the hardest things I have ever done. I was with her when she went and reassured my love for her and let her know she was the best dog we have ever had or have ever known.

Grief is a strange thing. It is like a shadow hanging over your shoulder. Friday I was useless. Going an hour with out crying was impossible. Being home was miserable. Saturday was a little better, but still gut wrentching. She wasn’t the places she should have been. Cleaning out her dog dish was so hard. She used to love to eat, she used to be over weight. By the end you could almost see her ribs. Andi said at one time “Mom, Haily is shrinking”.

I’m pretty sure the lump will stay in my throat for a few more days. Talking aloud about it is really too much at this point. It is so weird to not have her in our home when she was there every single day for over 7 years.

It was Andrew and my first joint loss. Someone we both cared deeply for and we held each other and just cried. She was honestly and truely our family member and we miss her dearly.

I start to feel ok and am about our every day life again, but the feeling I have is hard to describe. It is like a feeling that clings to me. I turn a corner and she isn’t where she is supposed to be and my stomach drops.

I know Lily loved Hailey, they had a cool bond. Lily would reach out to pet her when she wouldn’t reach out for anything else. Hailey was very protective of her and when she was feeling better awhile back she would always sit right on the floor right next to Lily and her therapists as if to say “I dare you to touch her” she was a gentle dog with a sweet spirit and good heart, but also protective of her family. I haven’t felt as safe these past two nights.

I am struggling and I will continue to do so. Everyone in our house feels like if we get a new dog we will feel better, but I don’t think so. I am not ready to move on. Hailey deserves more and well, I don’t do puppies well. I want to take our time and find the right dog for Lily. Even if we have to pay a little bit more, I want to get a companion for her. Not a service dog though, I want it to be a family dog that is all of ours, but great with Lily. There is no need to rush this. I did however adopt a kitten yesterday. 🙂 Cats are a whole different ball park than dogs.

We miss you Hailey. Our life will never be the same without you.

This is the most recent picture I have of her. You all are lucky I don’t have a scanner or you would see her life in pictures 🙂

Vacation, VBS, Summer School… Oh My!

Kim Nothdurft

2 comments

June 17, 2009

Wow has it ever been eventful around here. If I am barely able to get on Facebook, you know I am swamped! Not to mention Craigslist! Sigh…
We got Lily totally off Topamax and boy is she energetic and hungry! LOL! She is still having myoclonic clusters more now that she is off, but it is not enough to make me want her back on. Her sleeping is really poor right now though and she is waking up the entire house. We are going round and round what we should give her to help her sleep. While in Colorado we gave her klonopin every night after the first night she started screaming at 3am waking up the house full of family. She sleeps like an angel with half a klonopin, but I won’t put her back on that permanently, but it sure is nice for travel. Her appetite is hard to keep up with and I am not sure if we should tribute that to being off Topamax or another growth spurt. She was 55 lbs at the Dr. and about 50″ tall. She is growing so big that traveling is getting harder and harder. Our goal is to get an adaptive van by next summer for her so she can go in her wheelchair in the car.
This summer is already killing me and it is only the middle of June. AND it hasn’t even been very hot here yet. I think we had a few days above 105, but for the most part it has been in the 90’s. I’m not looking forward to taking everyone back and forth to drop and pick Lily up from summer school when it is 110. I’m complaining. Sorry.
Last week we had VBS all week and I watched the leaders babies so I could be of a service AND stay with Oliver. It was a long week, I had to have all of us ready and out the door by 8:15am it always ended up being more like 8:30am, but it worked out. I fell in love with my boys, I had 4 boys all under 9 months, and made friends with the other volunteers. It was a fun week, but I have to say I was glad to see Friday come! I’m so glad I am finally getting to know people at our church, we’ve been going for almost 2 years but it is so big it has been hard making new friends, but I am so glad I am starting to!
The weekend went too fast and Monday was here with a 6am Horse therapy session in my view plus an apt with the geneticist at 8:45am in Phoenix. Andrew took Lily to Horse for me, but I still had to have her fed, dressed and ready to go by 5:45am. Then I had Ariel, my niece, come over at 7:30am and watch Ollie an Andi so I could take Lily solo. It was much needed since the apt went long (after I was late going first to the wrong office) and then Lily needed X-Rays. Apparently with Rett Syndrome most likely comes scoliosis. Although geneticists thought Lily looked pretty good, she did feel there is reason for concern. Sigh. I will see what the X-rays say. It is a good thing Lily does have an awesome PT who is very aware of scoliosis and Lily’s risk and really works with posture and of course the horse therapy is probably the number one thing we can do to keep her posture straight.
Summer school started this week and it will go on for three weeks. It is at our beloved Foundation for Blind Children and Lily is in the best mood when I pick her up! 🙂 It is hard not having busing though and having to drag Andi and Ollie with me on our trips to and fro. Ollie doesn’t make it easy when he constantly tells me of his dislike of car rides and his car seat. Oh Ollie, you are the spitting image of your feisty sister Andi Jane. My two curers of cancer. Or law fighters. Or stripper and jail bird. It is too early to really tell which way those feisty attitudes will go. Let’s pray they will go with the first two options.
Yesterday I got the pleasure of taking Oliver and Andi to the gyno with me. I thought I would be able to drop them off with Andrew or my mom at the office but both of them weren’t around. I had to scramble to borrow a car seat from my friend since I use a rear facing car seat for him instead of the infant seat, which he cries less in, BUT I had to have a place to put him while my feet are in stirrups. Let’s just say when the Dr. asked me what I was doing about birth control I said “this” pointing to my kids and I think the Dr. got the point. Having another child will absolutely never happen. When I complained I can’t even go to the bathroom alone, I really had no idea what I was complaining about until I was stark naked with my feet in stirrups explaining to Andi this is only ok because he is a Dr….. I need a massage…..alone.
In all seriousness I’ve been really struggling with Lily and her recent growth spurt. I am no shrinking violet, I am a strong woman and caring for Lily has not been much of a struggle until now and it really worries me for her future. I just didn’t picture her getting so big this fast. Getting her in and out of the car is getting to be more and more of a struggle. Her head gets bonked, she scoots down before I buckle her up and then buckling her in is harder and harder. Bath time is harder. Sigh. I hate to complain about something out of my control, but it is just one of those things that is going to happen and I will have to adjust. Just like every stage we go through with Lily we have to adjust. It probably is just more prevalent right now since I am dealing with a newborn and a 4 year old who likes to fight me in every decision I make.
In July, after summer school is out, I am taking the kids up to Greer for a week. My friend Kim and her family will join me for the weekend as well as Andrew, but for a few days it will just be us. I am looking forward to a week of not needing to be anywhere, not dealing with the heat and having a large area to let Andi run. She sounds like a dog, but that child has to have a lot of room to run. To exert lots of energy. We’ll fish. We’ll go on walks. We’ll relax. Fresh air. I cannot wait.
We are also thinking of taking the family to Disneyland for Lily’s birthday this year! We figure we better do it now before Oliver is a toddler and no fun to take anywhere. We have to capitalize on his lack of motion now before it is all over. He’s already getting up on his knees and I give him another month before he is off and crawling 😦 I so wanted for Lily to do things, we couldn’t wait for her to sit, to crawl, to walk. When we realized a lot of those weren’t gonna happen we pushed those wishes on Andi, naturally. We couldn’t wait for her to sit, to crawl, to walk. Well now I just want to keep Ollie my baby. I CAN wait for all those things and am sad to know they are just around the corner.
Again I am on here purging. I have so much to update and just do it all at once in one big run on sentence.
If you haven’t noticed I updated pix on flickr and they are on the slide show on the top. We had such a wonderful time in Colorado. The weather was perfect and it was so fun to see Andrew’s family (it’s my family as well of course, but I am just clarifying exactly which side of the family we were with) the kids (cousins) have so much fun with each other, although Andi got into it a bit with her cousins (which has a lot to do with the fact Andi doesn’t have to share really with anyone at home, yet, and she wasn’t being very nice with her cousins) she missed them the minute we left. All she’d say was I miss Ayden and Avery. And it is a blast to see Oliver with his cousin Jayda whom is only 11 days his senior. Boy am I glad we took Ariel with us on that trip! She was a wonderful help and I am so glad to have such a wonderful/helpful niece. We will really miss her when she is off to college in August.

Prayers needed!

Kim Nothdurft

no comments

June 12, 2009

I promise to make a post about us and soon, it has been quite a week! We got back from Colorado at 9pm on Sunday and had to be at church every day this week at 8:30am for VBS. I watched the leaders babies so I could be with Oliver and help out. I have a lot to update on, but right now I just want to direct everyone over to Kelly’s site, Janelle’s mommy, she is in need of some major prayers and I just want everyone doing it.
It makes no sense to me why she has to struggle with leukemia when she is so busy being such an awesome mom to her son and special girl.
We love you Kelly and hope you are up and at em again real soon.

This Post Stinks

Kim Nothdurft

4 comments

May 29, 2009

Activia…WOW! Lily has always had a problem with pooping. She is most often constipated, but there are times where she is the exact opposite, usually one or the other. We have tried pretty much everything. Most supplements make her let’s just say, a big mess. I hate having to use suppositories and I also hated to see her struggle. Well I think we found the perfect thing for our bug! Activia! Thanks Jamie Lee Curtus! J
That stuff really cleaned her out at first, but now she is just going daily and it isn’t rock hard poops, they are comfortable for her. I know this is sounding gross, but this is for you other special needs moms in case you are looking to try something for your kid’s poops. It doesn’t help that I was thinking of cutting out dairy this summer, just to mess with her diet a bit, but I think we should keep her on that stuff. It seems the better she poops the better she eats, a nice circle. I may still take her off straight milk. I don’t know yet. There are other CDKL5 kids that seem to do real well on modified diets and I would like to try it. We’ll see. We know how much our girl likes sweets and I’d hate to deprive her, but if we could help her that would be nice too.
We are still in the Topamax wean and it is going great! No more seizures than usual. She still is having her drops and jerks, but she’s always had those. She is NOT sleeping at night however and I am pretty sure that might be connected. I’m sure she will get adjusted.
Andi is surviving on a solid diet of Otter Pops right now. Gymnastics is going well. She had her first class in the upper level and she was awesome. Andrew has taught her how to flip into the pool. Yes that is what I said. So when she had to flip into the ball pit she did it like it is an old trick of hers. I signed her up with our park and recs for a ballet class. She is so excited!
Oliver was 16 weeks yesterday and finally mastered the back to tummy roll! Boy was he happy! He got the sloppiest grin on his face when he did it! He has been working on this for a week now. He has been rolling tummy to back for months now, but he would get so mad when he ended up on his back. I think that is why he was so happy to have gotten back to his tummy. He will be crawling before we know it. He is scooting around. He is laughing all the time. While he still does cry in the car seat, we are down to about 50% and it isn’t 100% of the time. I was telling Andrew, “I don’t know if it is because he is my boy, my baby, or what but I REALLY enjoy Oliver”. Not that I didn’t enjoy the girls, but Lily’s infancy was spent in hospitals, dr. offices, with therapists, social workers, state employees, etc. I was spending so much time trying to fix her, enjoying her was hard.
Andi was impossible to enjoy b/c she cried all the time. She wanted to only be with me and she drained me.
Oliver is just so cuddly and sweet! We had a tough first few months with him and I am pretty sure they were tummy issues; he still spits up all day long but no longer seems to be in pain. He loves to eat and eats often! It is so cute the minute I pop out my boob he gets this big grin and goes to town. Maybe it is ingrained in him to smile when he sees boobs? He is a boy. He still isn’t sleeping so great. Usually first 4 hour stretch then every two hours until around 8 or 9am. But I genuinely think he is hungry when he wakes, I can hear his tummy growling! Last night we let him try some rice cereal and he ate it like it was going out of style! I guess I will have to start feeding him more than just booby juice. Boys sure are different than girls. But you want to know Andrew’s response to my comment about enjoying Oliver? He just said that I am getting old.
Mommy is also doing something fun this summer! I enrolled myself in a how to make a children’s book class. I have my idea and am so excited to learn how to execute it. Even if I am the only person who reads it, I can’t wait to make it! That starts in two weeks. I wasn’t going to do it since it is 2 hours every Wed night, but Andrew encouraged me to do it and I am so excited!
Lily gets out of school on Wednesday and we go to Colorado on Thursday!

Bye, bye, bye

Kim Nothdurft

no comments

May 24, 2009

Andrew took the girls up to Greer this weekend with my parents. When my mom came by to get the girls, they rode up with her, she asked Oliver what he would do without his sisters, as he was watching Andi, laughing. I said “he’ll get to eat when he needs to, he’ll be held more, get a bath…”, my mom laughed.
I was serious.

Blog at WordPress.com.