Friday, May 29, 2009

This Post Stinks

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!

Saturday, May 23, 2009

Bye, bye, bye

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.

Tuesday, May 19, 2009

Almost sounds like a Christmas letter

Wow! May 19th? Seriously? Lily has one more “full” week of school, “full” because Monday is Memorial Day, but she has that week and half of the next. She gets out June 3rd. I can’t believe another school year has been completed. I would be excited about summer school, except well the school says Lily doesn’t qualify for an ESY (extended school year) meaning they won’t pay for her summer school AND I have yet to hear back from DDD (dept for developmental disabilities) for their approval. We have never in all Lily’s years not had her qualify for summer school and have DDD pay, but since the President took away our Governor that actually cared about education and special needs, well now we’re lucky to get them to pay for therapy, whom all had to take pay cuts by the way, let alone any extras. Sigh. I will continue to call and bug them. I’m sure she will still get to go, but this is annoying.
June 4th we’re headed to Colorado for our niece’s baptism, she is 11 days Oliver’s senior. I’m looking forward to weekend in a Colorado summer, we’re already above 100 and we aren’t even in June yet. Andi’s been swimming every day already and has gotten the nickname “Bahama Mama” she has great coloring and has a nice tan, we’ll see how she looks in August, lol.
Oliver is doing great! So crazy strong! He’s almost rolling back to tummy. On his tummy he gets all over the floor, he rolls tummy to back, but gets pissed when he’s on his back. He’s a feisty one! I wouldn’t say he’s as feisty as Andi, I would consider him more “chill” until he’s pissed then his temper blows. I’m sure my family thinks he is always crying, but honestly he is great at home, he just isn’t one for social gatherings, but the child will have to deal considering he has a huge family no matter what side of the family we’re talking about!
We’re going to try to wean Lily off Topamax these next two weeks. I spoke with her neuro and he says he trusts me and if I want to do it than that is fine with him. She can’t sweat on Topamax and it is so hot. She was crying on the horse on Monday at 8am b/c it was already over 90 degrees and she was burning up. We decided to changed to 6am on Monday’s, yikes (!), for this summer to help with the heat. We really can’t do much with her in the summer besides swimming due to that side effect and I’m ready to see it go. I do pray she does well with the wean and appreciate any one else’s prayers as well! Please!
I’m really getting a hang of this stay at home mom thing, it took awhile, but now I can’t imagine working and not being with my kids! I decided to not put Andi in prek next school year. She already knows what she needs to start kindergarten and I want this last year home with me. She is going to be in school full time starting next year so I’d like to have this last one to be fun for her.
Andi moved up in gymnastics to a 5-6 yr old class, she just turned 4! Her coach, Amanda Borden from the 96 Olympics (ahem) said her listening skills and gymnastic skills are ready to move up. I’m excited for Andi. Now knowing gymnastics don’t usually involve 6 footers, I’m not planning on the Olympics for her, but she will have all the skills she needs from gymnastics to do any sport she wants. J Plus it is good socialization for her if we aren’t doing pre k. She is also going to do a swimming class in July, I want her to learn the actual strokes, I think she could be a great swimmer!
So that is our update. Andrew asked yesterday why I don’t update and I told him well if I am not holding Oliver I am cleaning, or taking Andi swimming, or taking a shower, blogging is low on the totem pole and then he says “you have time for facebook” *gasp* how dare he? I then explained I can do facebook while holding Oliver, that only requires reading and one sentence responses. He has no idea! Facebook is my social, yet not really social considering it is all online and not really in the “real” world, network ;)

Tuesday, May 12, 2009

Mother's Day

Well Mother's Day sure was indeed Mother's Day. Mother's Day to take care of everyone else.

Look what happened to Lily that weekend:

We think it was a spider bite, but still are uncertain. I took her to the on call Ped on Sat. AM and he gave her antibiotics just in case it was something more serious. It keep growing after seeing him so I gave her the AB's. She was almost back to normal by Monday morning. Poor thing. I am not one to freak out, but that really bugged me (no pun intended).

Andrew had pretty major knee surgery on Friday and I had to spend the day in the waiting room with Oliver. It was fun. I had a stranger lady holding him trying to calm him down. I also went into the cafeteria and three people asked if he was ok and commented on him being calm as opposed to how they saw him earlier in the day. So yeah, fun. Thank God my good friend kept Andi at her house. She is the only person that gets her to nap so I think she is a Goddess. When Andrew came out he was groggy. I think we both didn't expect the surgery to be as "much" as it was. He rested the rest of Friday but he really did more than he should that weekend. Like Saturday he went to Andi's soccer game and the party afterwards. He went to church and out to lunch on Mother's Day, but he was done by the end of that.

So while my Mother's Day was not spent pampered, it was actually more work than any other day, it is ok. I kind of seen what having 4 kids is like and I am so grateful Andrew got snipped! But I suppose if it was any other way, it really wouldn't have been Mother's Day, would it?

Although I do think next year me and my girl friends are going to Palm Springs for a spa vacation. Hopefully I will be done nursing Oliver by then and that will be a real Non Mother's Day which would be really nice. Really, really nice.

Monday, May 4, 2009

Lily Bug

I just wanted to give a quick Lily update since she is the reason for this site. Hence the name. :)
Lily is doing pretty good. She is back to having her 4 o'clock meltdowns that we haven't seen for a few months. It is like a cycle, she gets upset and has more myoclonic jerks and the jerks make her mad. It is the chicken or the egg thing since we aren't sure if the jerks make her mad to start with or if her being mad brings them on. Anyhow it is hard for everyone. Yesterday I just took her outside to swing and put her feet in the pool and waalllaaaa she was happy. No jerks, not sad.
I guess she needs to be stimulated at 3:50pm and we make her forget that she gets mad at 4pm. We had to up her clobazam to keep the atonics and myoclonics away. I have been lowering her Vigabitrine as well, there is such a fine line we have to walk with her in controlling the grand mals and jerks/drops. I really want to wean her off Topamax, but not ready yet. Maybe we can wait for the summer. I don't like to mess with stuff too much when she is in school. I like to monitor her myself with big changes. She's been on Topamax since she was 18 mo old! Yikes.
She will only have 3 weeks of summer school this year so we will have a lot of time together this summer.
Andrew thinks I am crazy to volunteer for VBS this year, he said he thought I would take the break from the kids, but the church really needs helpers so me and Oliver are going. Plus I want to be there since I am putting Lily in it this year. Last year she was in summer school. I am ok with her going to children's church for an hour on Sunday's but this is a whole different story 5 days a week, 3 hours a day. But I do think it is good for her and fun for her. The kids are great with her.
Lily did great today in hippotherapy. She rode Candy forwards and backwards. No pads. She smiled and clapped and talked the whole time. She continued with OT and Speech and did well also. Then I took her to school. Monday's are crazy.
Now I am taking Andi outside to swim. It is for sure May.

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