Tuesday, March 30, 2010

Spring Pictures

Courtesy of Meghan Green Photography:
Andi Jane was really the only one into it that morning, but these are all still so sweet!

Monday, March 29, 2010

Poop. Doctors. Ear inection. A Unicorn.

I just finished The Book Thief and I am in the mood to title my blog like each title of that book.
I have not updated and I apologize. Spring break invaded our lives and like a tornado it messed everything up.
Grandma Cheryl came 2 weeks ago for AJ's big number 5 birthday and boy did I take full advantage of Grandma! We had so much fun! We went to the zoo, we had Andi's birthdy at the park. We went bowling. It was fun. Then she left and spring break became not so fun. Did I mention we are on modified year round schedule so spring break is 2 weeks not one? Well that is the case. Andi went back today and Lily goes tomorrow but wouldn't you know we couldn't get Lily into a couple doctors until this week, so she goes back tomorrow for a couple hours then I have to take her our for an eye check up. Then Wed she goes to school and I have to take her out for neuro. But this neuro apt is much needed since her seizures freaking suck (I know I am poetic). She is having these really hard drops that make her loose all control. It is so sad to see, and not to mention how often I have to see them :(
Friday she has no school for Easter break so really it's been like a 3 week spring break, but honestly at least AJ is back in prek. That child needs her friends and some structure.
Last Friday I took Lily to GI because I was afraid her bouts of crying and her constant need for suppositories was not good and sure enough they figure she is really backed up. He gave a me a regimine to give her this past weekend and would you believe that even with a senakot a day for three days and miralax daily she is still barely going. My poor girl. We may have to take some more drastic measures if we can't get her to go, but we'll see if we can't help her at home first. She has gone and seems much more comfortable, but there is more to go. I know gross. But it is unfortunately a serious problem with kiddos with Lily and if not properly taken care of can cause devistating effects. I will not let that happen. So let's pray for more poop!
Poor Oliver is still having ear infections and even with the infection is gone he constantly has fluid. Dr. doesn't want to do tubes since it is becoming summer and he is not as suspecible to getting sick, but if he stil has fluid come May at his 15 mo check up we have no choice but to do tubes.
I feel bad that in most families that would probably be a major issue and in our family it barely hits the radar. So sad. It's just been too much lately. Our wonderful hab worker had her last day on Saturday and nurse Jennie has her last day tomorrow. It's so sad :( Not to mention scary to think of having someone new in our home. Sigh. But bright side is we found someone and she seems really great. Pray that is the case.
Oh the unicorn. We went to a party on Saturday at the park and wouldn't you know a pnoy and unicorn showed up. Kid you not. One kid said it wasn't a real unicorn and so Andi asked me and I said "what do you want to believe?" AJ said "that it's a real unicorn" "well then baby it is" and she got to ride it.
What a spring break it has been. Can't imagine what summer is going to be filled with.
I'm gonna get some new pictures up on flickr soon! Plus we got some adorable professional ones I want to share!

Monday, March 22, 2010

Not one sound

Not one sound. Lily rides the horse barely makes a noise. Lily comes home and has speech therapy where a sound would be most appropriate/appreciated. Lily refuses to even hum for music therapy who follows speech. Now I am trying to get some work done, Oliver is asleep in his crib in his room, Andi Jane is having quiet time in her room and who is yelling at the top of her lungs and laughing? Lily. Of course.
I swear this child knows exactly what she is doing.
Loudest non verbal kid, I swear it to be true. Just no one believes me because she only does it at the most inappropriate times, typically only when others are trying to sleep. Oh my Silly Lily.

Friday, March 19, 2010

Happy 5th Birthday Andi Jane!!

March 17th 2005 we entered the world of parenting a "neuro typical" child and our world changed! It has been filled with laughs, smiles, tantrums, and lots and lots of energy. Being Andi Jane's parents has been such a new learning experience and what fun we are having along the way!
We love you!!! (here is our edited version of your birthday video, go figure youtube thinks 13 minutes is too long when bragging about your child)

Friday, March 12, 2010

Suck it recession!

Ok this economic crisis is really starting to get on my nerves.
A couple days ago I got a letter from the place Lily has gone to summer school for the past 4 summers. It has been a safe place to send her. A fun place to send her. A place I trusted her to spend 6 hours of her day at. The envelope said regarding summer school, so I threw it on the counter and went along my day. Every year I get the info for registration, figuring that was what it was I decided to open it later. I had groceries to put away, dinner to cook, a baby to hold on my hip the entire time.
The next day I see the letter and open it and start to read. It's starting to look more like a college denial letter than a warm welcome to summer school letter. I see "due to this economic crisis" and "here is who to talk to if you no longer comply with requirements". Skim skim skim... ok list of requirements (it's how you read when you have some form of ADD) child must be able to feed self, potty self, dress self, etc etc etc....BAM! Another freaking door closing. There is no program like this one. Sure there are other programs, but none like this. The hours will be less, the people will be different, the whole thing different. Lily loves summer school. She gets so bored at home. This is so annoying. Bite me crisis.

Oh BUT I do want to give my big papa a big woot woot! Although I am no longer making a penny for this family (well except for my $180 at a garage sale last weekend, go me) we are still maintaining because my man has stepped up. He is a rock star! As long as we can do this for a few more months we'll be fine. Thank you honey, not only are you hot, but you are a hard worker and your work has not gone unnoticed. I <3 you. (oh this isn't facebook, <3 = love on fb). Your kids appreciate all this mommy time they are getting. What a wonderful gift you are giving our family by making it possible for me to stay home with our cute kids.

So yeah another door slammed shut in our faces. Another thing for me to figure out. I have no idea who is going to do respite for us in I don't know 3 weeks. I now have no idea where Lily will get to go to summer school at. I do know we'll get through this just like we get through everything else. But that doesn't mean it still doesn't suck.

Tuesday, March 9, 2010


Andi Jane: "Mom! Look!"
Me: "What?"
AJ: "That show, it's called Diary of a Wimpy Kid"
Me: "Yeah....and?"
AJ: "I get that sometimes, hu?"
Me: "What?"
AJ: "Diary"
Me: blank stare while I figure out what she is talking about... "oh yeah, only when you eat your boogers"

Tuesday, March 2, 2010

For every closed door...

I haven’t posted much lately, not for a lack of things going on and not for a lack of words. I was honored by being asked to write one of the letters welcoming families to the CDKL5 diagnosis on the new CDKL5 website (set to launch end of March!! No worries I’ll link it up as soon as I can!). I did not take the task lightly. It could be one of the first things families came upon when they get home from the Doctor appointment and they type CDKL5 into google. I wanted to be welcoming and informative, yet honest and real. I know what these families are going through and I just wanted every word to be just right. I wrote and deleted and wrote and deleted. It was taking two steps forward and one back. But I got it done, I was very happy with the final product and sent it upon its cyber way. I can’t wait to link the site on here and for all of you to do the same (nod nod, wink wink) Now we have a name, an organization and a website, now it’s time to raise some dough and kick some ass!
On to life as it is now…. You know how some people see change coming and they embrace it with a gooey wet kiss and smothering hug? You know how some people give it an air kiss and pretend they are happy to see it? You know those who see it and run for the nearest exit? Well yeah that third person is me and if my life were a cartoon you would see me running to one door and see the change monster so you’d see me running for another door only to see the change monster there so the last clip would be of me running off a cliff. Enjoy that little mind art? You’re welcome.
Change has not only come though one door of our home, but pretty much through every open crack. First off it was a joint decision for me to stop working for a few months. With construction right now it is slow, and in a field where people are willing to cut others legs off (or fingers;)) for their job, it is even harder. Our overhead is too high and I have the least responsibilities since handing my HR reign over to work from home with my babies. With Andi’s pre k schedule and not having child care for Oliver, it was the only obvious choice was to cut the weakest link. I am not angry, and thanks to Obama, unemployment has never been so affordable! Health insurance is cheaper on COBRA than while employed, but then again while employed I had a pay check. (ahem) But Andrew is working hard, he is supporting us and I pray that come August when the girls are both in school full time I can commit myself to working and (sniff sniff) put Oliver in daycare. It is just a lifestyle change to go from two incomes to one. Change. A scary freaking change.
Then while preparing for our first week of one income we had a meeting with the state nurse whom I was afraid she would be bearing bad news and she was. We knew we were skating on thin ice with our skilled nursing respite care, Lily’s seizures while yes often and frequent, have never been prolonged or life threatening. She is a kid that our neuro said has never fallen from his top 5 seizure kids (hardest to treat) yet she has never been in status. She has never ridden an ambulance because of a seizure (totally knocking on wood here). She is fed by mouth, never needed oxygen. She is the healthiest kid I have. So I knew we were skating by with having the highest paid caregiver possible. But I’m sure as you can imagine with a state that is broke supervisors are looking into cases and finding kids that don’t need that care and are pulling it. So our nurse, whom we have had for 3.5 years, will only be with us one more month. She is like a grandma to our kids. Do you have any idea how nice it is to have a nurse in your home daily? She answers questions, gives us advice. She loves on all three kids, and takes such good care of Lily. Daily she meets her off the bus. They go on daily walks. She feeds her dinner and gives her all her meds. I trust her with Lily and I don’t know how I am going to feel handing Lily over to a care giver that has no medical background. It is a frightening thought. So now I guess I can use my time unemployed and start looking for someone to help care for Lily. Sigh.
So February has not been my favorite month of 2010. Oliver turned one, but that was sad. Andrew turned a year older and closed our age gap from 4 years back down to 3. I did appreciate that, but for the most part February blows.
I am going to pray that doors have been closed and windows have been opened. I know this will all work out; I just like how things were. Ain’t that life though? Never get too comfortable.

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