Tuesday, July 28, 2009

Itchy Itchy

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





Sunday, July 19, 2009

Unspoken Truth

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:

video

Monday, July 13, 2009

Where to begin

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?

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