Thursday, March 31, 2011

Andi Jane turns 6!

My amazing friend Liz took these shots! If you are local please check her out, she is fabulous and says things like "don't fart!" to make a kid laugh! :) LIZ


Wednesday, March 30, 2011

Can you hear me now?

Ok Oliver's hearing test update. Not as I thought. Apparently he has some fluid behind his right ear, which seems to be at every Dr. apt we have ever been to, which is causing him not to hear as clearly in that ear. At one point during the hearing test there was a higher pitched quiet but not whisper sound to his right that I was sitting there dying on the inside wanting to yell don't you hear that Oliver??!?! It wasn't horrible, that was the only really noticeable spot he did not hear, it seems like his left ear makes up for a lot of the loss of the right ear but now we have to follow up with the hearing specialist/ENT on Tuesday and go from there. Sigh. I just swore they would have said he hears just fine lady .... but that is what I get for swearing.
Next up Andi Jane. The diagnosis is still sinking in. I'm not quick to do anything right now but let her be. We are going to watch what she eats (as much as we can) and try to take this diagnosis one step at a time.
And Lily. Poor seizing Lily. This AM while having her sit on the floor before I got her in her chair for school she fell back with full force, banged her head and had a huge tonic clonic. Good morning to you sweet girl.... yesterday I called neuro surgeon asking what the heck is going on and guess the freak what?! The nurse from the other clinic, the one I called and got an attitude from telling me she hadn't yet dictated the notes and will send them when she can... NEVER SENT THEM! The nice lady I spoke with yesterday said there isn't much they can do without the notes, in other words insurance hasn't even been notified yet for approval. I let the lady know this isn't breast implants we are waiting for this is something we are praying that will give our daughter a better quality of life, these seizures are at an all time high (well not as bad as time leading up to brain surgery, but an all time 2nd high) she was very nice and said she would call the other nurse and get a fire lit under her. Well since I can't trust that is actually the case I will be on the phone yet again today. She also said our insurance is a quick one to deal with and this surgery should have been done weeks ago. It's in your hands God...you have your reasons.. I know you do. You have to! Because if it weren't I'd actually be even more pissed than I already am.
This just goes to prove NO ONE will care about your child like you. NO ONE! So be annoying as hell if you have to. If you want your child cared for this is the only way it will be done. Sigh.
I know the VNS will not be a cure all, but it has to help some. If not I am not sure what other road we will have to venture down. We can still try keto diet again but with a kid who only has a few life pleasures taking away one of their favorites is so tough to do. Sorry Lily no pudding, how about a butter pop?
She also has a follow up with Ortho next week and I am afraid scoliosis is getting worse. I don't want to hear we need to brace her. Pray for that one too please. Did I even need to ask you to pray for the VNS surgery?
Oh we got her glasses ordered! Now someone just needs to go to the mall to pick them up. Cute, pink Barbie glasses with transition lens. I'll post pictures when I take them. Along with Andi's birthday festivities....
And Oliver will start survival swim soon. Something I have been deathly nervous about. I just am such a wimp with my baby. These classes are expensive and time consuming and I am just so nervous to watch my baby learn to swim this way, but I don't want to spend all summer freaking out around the pool either. I need him able to get in the pool and feel comfortable. I'll keep you all posted on all areas.
Please keep us in prayers.
XOXO

Thursday, March 24, 2011

Need to getaway?

I posted on FB that I want a vacation and everyone seemed to 2nd, 3rd, 4th etc the idea. I see that I am not alone, when you have spring break for 2 whole weeks and you go nowhere then look on the social media sites and see people sharing vaca pictures it kinda bums you out. Is there a new word for that condition? I'm sure the Today show will explain this soon... do you suffer from social media vacation envy depression....
Whatever anyway, I so desire my family on the beach. Is that so much to ask? Actually right now, yeah. It is :(
Lily is just having ridiculous seizures. Yesterday I took the kids to open gym (2x in a week) and I was having Lily sit on the mats with her back against my legs while I stood and boom she dropped on her face and went into a full tonic clonic seizure. Then she was exhausted and fell asleep. Then she had another that evening at home on the floor. And that is just an addition to the myoclonic clusters she is having and of course the atonic drops that just come out of no where.
I'm so sick of seizures. I hate them. I can't get an answer from neuro surgeon if insurance has approved the VNS implant. I don't want to call and have him mess with the meds again. It never gets us anywhere. I hate how intense her seizures are and how intractable they are. I can take everything, the wheelchair, the diapering her, the lack of communication, everything, but why must we have to watch her body suffer all day long from these stupid seizures. Yes Andi Jane I said stupid, I know it is a bad word, but I'd like to say so much worse.
Oliver has his hearing test tomorrow. I'm nearly positive he can hear well, I was whispering behind him and he was grumpy and he'd say "NO!" when I whispered to him. He is grumpy often. But we have to have the hearing test if we want a speech eval. And I think he is ready for a speech eval. He seems to be picking up more words, but compared to where he *should* be and where he is is a huge difference. I know better than most about the *should's* and that is why we've gone this long without any concern from me, but now it is time to be proactive. When he can communicate with us all our lives will be better. I know he wants to say more than mine and no. Right? Well he is 2 maybe that is all he wants to say.
I'll update tomorrow. Someone send me some sunshine we can implant up my hiney I think I need it.

Wednesday, March 23, 2011

The pleasures of being a woman

"I don't want to go to the Dr for that, it's embarrassing!" Me
"People get pregnant every day as a result of sex, that isn't embarrassing" Andrew
"Babies are cute, bacteria in your urethrae isn't cute!" Me
But I should have just gone yesterday. I get these dang UTI's like 2-3 times a year. They are a pain in the butt. Well.... not butt... but you have to go to a dr or in my case urgent care pay $60 then $20 for meds. But I should have gone yesterday but I just thought I could wash it away with lots of cranberry juice and water, but I woke up today feeling horrible! Went to urgent care at 8am (Andrew stayed with the kids so I could go alone being that it's spring break)turns out it started going into my kidneys, I had the largest amount of whatever they check for you and protein in my urine. Gross. Anyway, got some meds $80 later and now home with the kids who are currently hitting and fighting. Yes a 6 year old and 2 year old. Sigh.
Here is what I just heard " [screaming] when mommy and daddy get me a drum set I'm not sharing it with you!" Andi Jane... what is she talking about? What drum set? She's crazy.
We need to do something today, I can't stay home with them and listen to this all day.
I apparently find it embarrassing to go to a Dr for a UTI, but apparently not too embarrassed to share with the internet. Sweet.

Monday, March 21, 2011

Rainy Day

It’s been a crappy day. It didn’t start that way. The kids are going on week 2 of spring break. I woke up at 7:30am and no one was up yet so I caught up on RHoOC then Andi Jane came in my room and said “good morning mama!” The perfect start to any day! Then she told me she didn’t pee in her undies (for the 3rd night in a row, a huge conquest!) and then I got out of bed to get the other two up, fed and dressed to take them all to open gym for a playgroup set up by our MOPs group. I was excited to take the kids there today, I thought it was a perfect outing and it was. It was fun watching Oli jump and play and Andi Jane had a great time. I even think Lily enjoyed me bouncing her on the soft mats. It was a grey rainy day and loading and unloading the kid’s sucks when it is raining, Lily just gets soaked going up and down on the slow lift. After the gym Andi Jane had her 6 year well check. Andi and Oli were fighting and yelling and absolutely out of control at the Dr. office. Like more than I have ever seen before in this type of place. It didn’t help that we were discussing Andi Jane and her ADHD diagnosis. It was embarrassing and exhausting. We aren’t medicating yet. I still need time to mill this over, but the diagnosis is pretty much set in stone now. We all filled out forms (Andrew and I separately and her teacher) and she scored highest in the attention deficit part but qualified enough to add the hyper activity as well. This bugs me. It bugs me a lot. I have heard people describe their ADHD kids as “special needs” kids and I would get so annoyed because comparing them to Lily was like comparing apples and steak. No comparison, but now honestly having a kid with this I get it, if I didn’t have Lily to compare her too, I think I would think I had it rough with Andi. I don’t think I’d ever call her special needs. High needs. Highly spirited. Out of control. Sure, but not special needs. But in all honestly she is special needs if you break down the word. The child is not typical. I know she isn’t. I never thought she was. But to actually hear that some of her actions are out of her control bothers me. Makes me sad. Makes me think I was too stressed with her while pregnant. Makes me think I should do more or less. I don’t know. I’m tired. I’m tired of worrying. I don’t want another kid with a brain/mood altering drug. I don’t want this. I love my kids so much and it is exhausting to stress so much about them. Now I need to look into if Andi needs an IEP. The pediatrician also suggested family counseling, to help us with behavior plans. To help her with self esteem issues. Not that she has any problems in that area, but he said it could come up later. Andrew and I just barely graduated marriage counseling, now we gotta do family? Sigh…
Oli has his hearing testing on Friday. I’m sure he is fine, but his lack of vocabulary is starting to worry me. And most likely he is fine, but finding out now is the best thing I can do for him. For us.
Lily is continuing to have her seizures. She had a big one on Saturday night. Freakishly big. She continues to be constipated. She continues to have her crabby spells.
So after this day I came home deflated. Sad. Just wanting to lie down. I had an insane head ache and I just wanted to rest. I decided to spend some time in a work book I’m doing and spend some time in prayer. Tears were flowing. Flowing from stress. From heart break. From the whole lot the past 6-8 months have brought. My head ache. Then I sucked it up and put my smile back on and went out to face my life, but then I got on facebook and read that a sweet little 4 year old in our CDKL5 family had lost her life on March 16th and it sucker punched me. I don’t know the details but I know a little girl with the same disorder as our Lily lost her life at only 4 years old. I’m shocked and feeling so guilty for pouting and whining about my day when I saw what another family is going through. Life always has a way of putting things in perspective. I love my family. I love my life. Yes it isn’t easy. Yes we got soaked in the rain. Yes one of my kids can’t control her self at times. Yes my 2 year old has the vocabulary of a 16 month old. Yes Lily has seizures. Yes she has constipation issues. Yes life is hard. But it’s our life and we have to live it every day like we don’t know what the next day will bring. So I finished my night playing a game with Andi. Giving Lily a bath and lotion rub down and singing and rocking Oli. Giving them all an extra moment of my time instead of counting the minutes until I put them down. Instead of saying we’ll play tomorrow. I did it tonight. And when I close down my laptop I will pray for the family that has to endure another day of not having their sweet daughter to care for and love. And that is what I will remember when I feel like getting the violin out and playing me another sad song.

Wednesday, March 16, 2011

Andi Jane Turns 6!

March 17th 2005 we had no idea what we were heading for..... these past years have been filled with lots of hugs, lots of kisses, lots of smiles and lots of crying and tantrums (from her and me). She beams with a light that only she can shine and it came at a moment when we needed it the most. Loving this smart, funny, clever, compassionate little girl has brought us so much joy and we feel privileged to be the ones who are shaping her future. Thank you God for this precious gift.
Andi Jane YOU are amazing and YOU shine like a star. I pray that your dreams come true and your light continues to shine bright.
We adore you!
Love Mama and Daddy

Tuesday, March 15, 2011

Update of No Sort

I'm updating with nothing. I've got nothing on the VNS yet. But I am taking Lily to get sealant on her teeth tomorrow at 8am. Yippy! I'm praying for another peaceful experience like last time. At least Grandma and Grandpa N are here and I can just get up with Sissy Sue and leave the house probably before anyone else even wakes up. I'm on a no sleep crusade right now anyway so it really won't bother me none. I do the birthday video for my loves every birthday and Andi's seem like I use the same pictures over and over again while just adding the most recent years photos so in an effort to not do that this time I am staying up way too late and only half done. I am sure it'll be another late night tonight and sometimes I wonder why I do this every year. I am such a sentimental sap, but I like to think come Andi's 30th birthday and she is just going on her first date we would like to have all this prepared for her wedding you know when she is 35. ;)
Whatever. The kids love it and when I say the kids, I mean Andi. Since she at the moment is the only one who can let me know they like it. She has a lot of opinions in as what to put into her video and I can't imagine if she woke up on March 17th and there was no video for her. I think she'd sell me on Craigslist. But I do love her so. It will be evident in the songs I chose this year, that you will have to wait to see on Thursday as well. I think every year I just get sappier and loose my sarcastic edge and it is rather sad. Makes me wanna cry. Get it?
Ok never mind.
Here's my update. I don't have one.
Oh I did have a break in my lent vow and that is only because Saturday God wanted me to chill out so he gave me a 102.5 fever and nothing felt ok in my tummy but 7-up, but I hardly consider that cheating because I don't even like 7-up on a good day. Now had I blamed the fever and got myself a Dr. Pepper with crushed ice, vanilla and cherry syrup, maybe you could call me out. But no. I have not done that.
We are enjoying Andrew's parents. It is so nice to have more adult than children for once. You feel you might have the upper hand... might... but seriously Grandma helps me so much it is hard to going back to regular life when they leave, so it has been nice. And high five to God who let me get sick while we had family in town who let me hibernate in my room the whole time. How often does that happen to us moms? Never?!
Oh we started hippo therapy back up finally. Yay. She went last Wednesday and it was just like riding a bike for her. Well you get what I mean. I guess it was just like riding a horse for her. She was great no matter how sucky her seizures have been she rocked it. We went yesterday and we go tomorrow for a make up. She's literally back in the saddle again.
Anyway.... this post was like a Seinfeld episode. Just minus the million per episode. Darn.

Wednesday, March 9, 2011

Not looking good...

Oh gosh I am so annoyed! I called Neuro Surgeon's nurse to see where we are at regarding insurance approval and she said well I haven't even done the dictations from last weeks appointment, she said she was not the person who handles the insurance approvals but they take several weeks and not a quick process. Ugh. I didn't like her much. I did get the number to the lady at the office and will give her a call on Friday to make sure she got her dictation notes which they need in order to make the insurance approval request . I know the approval does not take that long if you are insistent and maybe I will do it instead. Anyway, to think the surgery will take place next week will not happen. I was so hoping to do it while Andrew's parents were in town to alleviate some stress regarding the other kids, but even despite my best efforts it is not gonna happen. Oh well. I know I am not in charge, so I will just relax and believe it will all fall in place as needed and we will be just fine.

In other news the most relentless child on the planet willed another tooth out.


And Oliver tried to cut his penis off last night with play dough scissors. All the while it didn't cut any skin, he sure pinched himself pretty badly. This was a popular post on facebook and one of my favorite responses was... did you tell him he may need that later in life? Lol.. gotta love kids.

Tuesday, March 8, 2011

Giving it up

I like to give things up for lent. Let me go back. I give things up for lent, something I really like. I do not like giving said things up. And often someone will say why are you giving up something for lent? You're not Catholic. I say, I know. And they follow up with then why do you do that. I guess it is as simple as this. **disclaimer Jesus will be discussed** I believe over 2000 years ago God gave his one and only son. I have one and only son and no one will take him from my arms. But God gave us his. His one and only son. Then his son, Jesus gave his life. HIS LIFE. And not by a shot to the heart. He was crucified. He was ridiculed, beaten, hung to a cross and left for dead. He gave up HIS LIFE for our salvation. How do you feel at the eye doctor and they are about to blow air in your eye? Apprehensive? Do you jump before they even puff? I know I do. Or right before you get your blood drawn do you tense up, and not because they told you so? When we know we are about to hbe hurt we have fear. Jesus knew he was going to be crucified and went along with it, for us. Can you imagine? Even for one second? And all for us. For me. So when someone says why would you give something up for lent if you aren't Catholic, I simply say well God gave up a whole lot for me the least I can do is give up....... soda. Yes soda.
And let me just give an example of my life with soda. Just about every day starts with an $0.86 32 oz Dr. Pepper from Circle K with crushed ice and cherry and vanilla syrup. And no diet. Full sugar Dr. Pepper with full sugar syrups. Pretty much every day. That is the morning, then I will have a soda with lunch. Yes. Typically never more than 2. But never less than 1. So giving up soda for the next 46 days is a bit of a sacrifice and no it isn't life changing... well maybe for my health a little, but it is a small sacrifice. But every morning I don't stop and get my soda I think I will remember a little clearer what mighty sacrifice was given up for me.

Well here's to my fat Tuesday... I had 2 today

Monday, March 7, 2011

Daddy/Daughter Dance

No detail left unturned, it was a spectacular night and I was so impressed by the hard work these amazing women did for this special night. I did not have my camera at the event, but I did take pictures before they left.
Andi stayed back with me while I took decorations down, it was pretty late when we were driving home and she said to me "while me and dad were doing the robot I told him this was the bestest night ever!"
I think they had a great night!




Friday, March 4, 2011

Update

Well as long as we can get the insurance to not be a pain in the hiney we can do the VNS surgery during spring break! The neuro surgeon (who was very nice btw) said she'll go into Lily's previous site and see if they can't use the nerve above and stay on the same side. She said with the scar tissue it is a longer procedure, but nothing too risky, they aren't messing with the wires around the previous nerves. It will be an outpatient surgery and as long as all goes well she should be up and at em (as much as Lily can be) in a few days.
I let her know we'd like this done ASAP and she was going to let her nurse know that so she works on insurance approvals. I will keep you all posted.
Tonight is the daddy/daughter sweetheart dance at church and Andrew is taking the girls, Grandma is taking Oli and I will be serving at the dance and we are all so excited! The girls are going to look so beautiful and daddy is pretty excited! This is such a special opportunity and I'm so glad to have wonderful people in our lives who put forward such an effort to make these things possible! Pictures to follow!
Saturday is my dear dear friends wedding and Andi's first sleep over/slumber birthday party for a friend from church. Sunday we are going to the Renaissance festival after church which happens to pretty much be one of my most favorite days of the year. So to say I am looking forward to this weekend would be a mild understatement. Ha Zaar!
Pictures of all things to follow!!!
Happy weekend friends!

Wednesday, March 2, 2011

Cancellation List Woot Woot

At my request we were placed on the cancellation list for the neuro surgeon and sure enough someone cancelled. Tomorrow she is going in at 8:45am and I am hoping and praying I can finagle my way into getting the VNS scheduled during our long spring break, the girls are off March 11-29 (!) modified year round schedule, and grandma and grandpa Nothdurft will be here a lot of this month so it would be optimal to get this done during this time, besides the child needs this thing back in her. I know it isn't a cure all, but I honestly believe it helped her when it was on and working. So we see nuero surgeon just to see her and schedule the surgery, nothing really will happen at this appointment, just another way for me to use up a bunch of gas in our gas hog van. Oh and to experience the joys of rush hour traffic in downtown Phoenix.
Wish us luck, say a prayer, send positive vibes that I am able to get this thing scheduled sooner rather than later.

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