Update

Andi Jane got some nasty summer flu. Her fever hit 103.9 last night and she was talking crazy. She still has a fever today but of course in true Andi fashion she still pretends to be just fine. We knew she was sick yesterday when she went to her room and laid down. No TV. No fights. Just went to lay down.
Lily is doing well, she is having more seizures and I swear it is when ever we up the Clobzam (the one that was the study drug). Her drops slow down, but it seems to make her have these more severe myoclonic clusters. I really don't think it was the removal of Topamax or we would have seen these sooner. I don't know. I am trying to adjust her other two meds before adding Topamax back. She sees neuro next week so we will chat with him about all this.
Summer school is going great!
Some bad news is we got her x-ray results back and there is a curve in her spine so now they are referring us over to scoli clinic. I'm not sure what to expect now. I know this is/was a possibility but I really wasn't expecting it. I know the horse therapy is helping and will continue to help. I just hope we don't have to brace and all that jazz.
I am praying Lily and Oliver don't get this flu Andi got. We are still planning on skipping out of town and going to Greer for a week, get out of the heat and enjoy the fact we don't have to be anywhere, no plans! I am so looking forward to the next three weeks of not having to go anywhere and having to get everyone up and ready by 8 am!!!
We got a new dog yesterday. She is a rescue dog and as sweet as pie! We are already getting attached! She is a year old, already house broken, hasn't chewed on anything yet and doesn't shed!! Can't believe someone didn't want her!

Heartbreak Hotel

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!

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!

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

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

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.

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 ;)