Wednesday, December 30, 2009
He got gifts from all our family members as well so I shouldn't have gotten him anything :)
He was so cute though with these little soft cars he got from his aunt and uncle. He crawls around and he rolls the cars with him. Amazing how boys are just ingrained to love cars and girls to love baby dolls.
Relying on construction for your paycheck during this recession is not fun business and it was the littlest we had to work with this year regarding gifts, but no one cared or noticed. The kids were happy, Santa even managed to find the dumb zue zue pet hamster, I'm pretty sure he found it via Ebay ;) But we were all happy and I am pretty certain we have made memories for our kids (well the ones who can remember) and that is most certainly what matters.
Happy New Year my friends. Let's hope 2010 is far better than 2009. Although getting my love bug baby boy outta 2009 was really the sweetest thing to have happened, there were some sad losses this year and life changing decisions made. It was not a year we look back and say that was a great year, but it was an important one and we are better people for having bad years and taking better notice of the good years. I am certain good things are to come 2010.
Tons of December pix uploading on flickr :)
Thursday, December 24, 2009
I love Christmas time. I love the music, the chill in the air (note AZ chill, not that ridiculous weather most of you deal with), getting the perfect gift…I don’t think I have done as good of a job at it as I typically do, I blame this solely on Oliver and intend on being back in the swing of things hopefully by next year. But regardless of being ready or not, I love the whole month of December. I have a birthday 6 days prior to Christmas so it really feels like it is one fun thing on top of the next and it doesn’t end until Jan 1st, so no I don’t just like Christmas, I love December.
One of my favorite things is Christmas music. I know it is corny, but I have never claimed to be anything but corny. I can only get away with it about a week leading up to Christmas with Andrew in the car, but if you are riding with me and it is December buckle up and turn it up…fa la la la la la la la la. Or for you Christmas Story fans (and who isn’t?) Far ra ra ra ra ra ra ra ra.
With this Christmas post I am sharing with you my three favorite songs of this season.
In no particular order, these are the three songs I will indefinitely listen to either just going to the store or going to the mountains. These songs Andi can sing and I’m sure Lily and Oliver know them too; they just can’t sing them along….yet.
These are as follows and of course in no particular order:
1.) Santa Baby. And only the original will do, by Eartha Kitt. If Madonna’s version shows up on the radio with that Brooklyn accent she is turned right off. What song is more fun for us girls to sing? Who doesn’t want to karaoke that in a sexy santa dress. You know you all WANT to do it, this I know. “Slip a sable under the tree, for me” “Been an angel all year”
2.) Baby, it’s cold outside. There are several versions of this song I enjoy. The original is probably the best, but I will always still hold a candle for Nick and Jessica and I still think they will get back together, because they really ought to. So because I probably was the only human who really enjoyed their Christmas special they did many years ago, I choose the duet they did to Baby it’s cold outside. The banter back and forth is really very cute.
3.) Mary did you know just about any version will do. I’ve always enjoyed the Wynonna Judd and Kenny Rogers version, but lately I’ve really been liking the Clay Aiken one. The song was just a song until Christmas 2002 when I was holding my own sleeping child in my arms and I listened to those words, really listened to those words, it hit me. I could feel what I could only imagine what Mary felt. Loving this tiny creature with a love you have never imagined before. Every mom thinks my baby can be anything he/she wants, and Mary was no different. She knew what the angels told her, she knew that her baby would save our world. But in that moment, the moment he was in her arms as she sat there and held him, watched him breath those tiny baby breaths, marveled in his sweet smell amongst the other smells that weren’t as sweet in that stable, as she kissed his sweet head she wasn’t thinking this is the son of God, she thought this is my son. Yet as the song so eloquently puts it, “when you kiss your little baby, you kiss the face of God. Oh Mary did you know.” Do I think Mary knew? No. I think Mary just knew what all we new moms know. This baby right here in my arms will save my life. And she was right. .
Merry Christmas my friends and family! I pray we never forget why we celebrate this blessed day. I too get caught up in the excitement, the gifts, Santa and it is all fun, but if we ignore the whole reason this holiday was set upon we will be missing out on the most important gift of all.
Much love from our family to yours.
Thursday, December 17, 2009
As I got older I rented the movie often and I could relate to more and more. The movie is a celebration of women. The deep relationships we need to function. An honest picture of how seasons and relationships change. I doubt anyone needs to know what I am talking about “the colors and blush and bashful” “the colors are pink and pink”. Steal Magnolias.
I still watch the movie and I sob. I know I am not the only one. There is that scene, THE scene where Sally Field had just buried her only daughter and she yells “I’m FIIINNEE! I could run to Texas and back, but my daughter can’t she never could.” Then sob. After that your heart aches. You believe that Sally Field has really just lost her daughter, because she is just that amazing (yes we really do like you!), but your heart feels trampled for her. You ache for her. Thankfully she had the group of friends she had to pull her out even if just for a moment to laugh, to break the tension. “Here hit her”.
But that moment, the one before the laugh, the one where Sally is yelling I’m FIIIINNNEE, you can feel her anger. An anger that is so deep from within if consumes your entire soul.
Anger is where I spent about 2 years of my life.
With a smile on my face and attending church weekly, I hated God. Who else could I blame? He was the one I spent my entire life praying to. Talking to. Confessing to. And he hands me this broken child for my first born? I can’t tell you how in the beginning I begged him. I pleaded with him. I got on my knees until the bruised. Yet when I got up, my daughter was still having seizures. She was still just laying there with no head control. I pretended that this was all ok, and honestly sometimes it was ok. I didn’t have as much of a problem with the physical handicaps Lily was showing, it was the seizures. I felt that the seizures were why she couldn’t see, why she couldn’t roll over, why she couldn’t ever just look me in the eye. I just thought if we could just stop these seizures life will change for her, but they never stopped.
Medication after medication, crazy ketogenic diet, VNS implant and when worse can to worse, brain surgery. All things I put all my hope in and all things that just crashed and burned. How many times can a person fall and get back up? One time Lily was in a large grand mal seizure and I was swiping her with the VNS magnet trying to make it stop but it wouldn’t, she just continued to seize, so I took that magnet and threw it across the room with all my might and said F-you God. F-you. Anger. So. Much. Anger.
I remember going to the mall with Lily, (because retail therapy is my friend) she was about a year, and we walk past a little girl in her stroller about the same age and the mom smiled at me and her little girl was holding a toy and looked up and smiled at me and I didn’t smile back. Who doesn’t smile at a mom and her baby? An angry person that’s who. I was so angry that my baby was reclining in her chair because she couldn’t sit up and she couldn’t hold a toy if I taped it in her hand. Anger. Anger consumed me.
**Leaving this like this is killing me; you readers know I tend to end light. Usually little words of wisdom, some cliché, or something ridiculous that has nothing to do with what I was talking about. I really want to continue my story, but I am not going to. I am doing this in stages and this was the ugliest one. The one I look back the most ashamed of, but you cannot appreciate the good without experiencing the bad. (ha I did it anyway….)**
Wednesday, December 16, 2009
Sunday, December 13, 2009
I was holding my 7 week old daughter after yet another seizure. I was sitting on my bed in our 2 bedroom one bath little house in Mesa, AZ. The one with the bright red dining room and huge back yard we planned our daughter playing in. I was holding her and the thought dawned on me like a light bulb being switched on. After two hospital stays and one separate ER visit it dawned on me and I got shivers from my head to my toes. It’s her brain. It’s her brain. It’s her brain. How did I not connect that seizures were from her brain, I don’t know. My age, I was only 23. My inexperience? The fact that the last thing you want wrong with your child is their brain? Maybe that was it. If it was her heart that would be tough, but there are meds, there are surgeries. The child still has their words. Their personality. Being her brain means loosing everything I planned on. At that moment I lost everything. I lost tea parties. I lost sleep overs. I lost fights over boyfriends. I lost watching her walk down the aisle. I lost it all. And then I lost it. Looking back those first couple years were so dark. Her first Christmas we tried to be happy. We tried to have fun but I remember her having 4 large grand mals that day. I put on a happy face and pretended like it was all meant to be, but my insides were crashing down.
I didn’t know at 7 weeks how involved Lily would be with her condition, but I knew enough to know the child I planned for was gone. And the light in my heart was shut off.
Saturday, December 12, 2009
I really have no time. But since I am here and Oliver is napping (although he went down 1 hr 45 min ago and he’ll be up any minute, but I had to get laundry done and the floors mopped for the millionth time this week. I am pretty sure whoever said that having a dog lowers your blood pressure, did not have my dogs) I'll get to posting.
Last week we went to “The North Pole Experience” up in Greer. A friend of mine came up with her family and stayed in my parent’s rental next door. We had a great time! It was so much fun! The kids loved the experience. It was visiting the north pole and helping the elves making toys for kids that are less fortunate (read the kids whose parents didn’t really feel like paying a million dollar for this experience) we got to ride in a trolley and sing carols, we went to Santa’s workshop which was brilliantly made, it was very authentic looking. They kids made toys went got to “elf school” and sat with Santa. They did a great job making the experience wheelchair friendly and treated Lily like a rock star. She didn’t get to ride on the trolley b/c it was too cold to take her in and out of her chair and there was no where to put her chair but since we had our van Andrew just followed us so I didn’t think it was a huge deal, but some may have been upset about that. I don’t usually get bothered by things like that.
On Monday we had to drive home and that was an experience like no other. Andrew went back early to get back to work and I drove back with the kids in the van. Andrew insisted I drive back a way that I hate and I refused. He said I would beat the storm going the way he suggested and I refused. Well a blizzard came and I fish tailed once and I slid all the way across the road to the other side of the road by the guard rail (we were in the mountains) and Andi cries I’m scared mommy. I say “NO ONE TALK!!!” and for about an hour I drove praying and saying “Jesus take the wheel” I wanted to pull over to cry, but had I done that we would have been in thicker snow and totally stuck. I knew if I cried while driving I wouldn’t be able to see so that wasn’t an open. It was an intense hour and when we finally hit Payson and it was just rain I thanked God we made it. The drive home from Payson would have been scary had I not just driven through a blizzard. It was a huge down pour through the mountains, but I felt like Jeff Gordon after all that so I was cool. When I got home and told Andrew my story all he said was “you really should have gone the way I told you.” Sigh.
Back to school and the week was pretty normal. Although I had a mole taken off and checked out a couple weeks ago and they called to say it was abnormal and I had to have it removed surgically. I was a little surprised by how big of an incision it was but by the sounds of things it was on its way to being precancerous so I am grateful I got it taken care of sooner than later. I have another one on my back I have to have the same thing done this Thursday the 17th. Gotta get this stuff done before my insurance changes and specialist visits go from $25 to $50!
I also had a root canal this week. And Oliver had his flu booster. He didn’t flinch again. Tough dude!
Oliver is saying Andi, I swear it to be true. He says dada and it seems to be directed toward Andrew and all I get are big tears and followed around if he is not in my arms constantly. He is also learning pointing gets him what he wants so maybe he’ll never talk. He can stand but refuses, he is scared to let go of anything and prefers to crawl. After crawling for over 5 months now he’s developed quite the calloused knees.
Lily is well. She is going through a phase of not wanting to eat, but she is fine otherwise so who knows what that is all about.
Andi Jane is Andi Jane. Not a lot new to share. Last night I took the girls to see The Princess and the Frog and that was a lot of fun. The girls seemed to really like it and it was the first time Andi made it through a movie, kind of. It only took 4 years and 9 months. I can’t wait for the ADD diagnosis.
Baby is up, no time to proof read so don’t judge or I’ll take twice as long next time to update.
Oh BTW the pix from last weekend are on the right, on flickr. :)
Thursday, December 3, 2009
I cannot believe it is Thursday December 3, 2009! I mean, really?! I never get to update this thing because there are just not enough hours in the day, really there aren’t.
Oliver has been getting up in the middle of the night again. Lily’s diaper leaked last night. Yawn. Then Andi and Oliver woke up before 6 am yet Lily I had to wake up at 7:15am to get her on the bus by 7:40am. The one kid who needed to be up was snoring away. Go figure.
Enough complaining…Lily is doing well. She got over her cold and gave it to me. Oliver had one at the same time as her so it is no shocker they gave it to their mama, but although it was fierce, it was short so that was good.
Andi is doing well and loving school. The beef with little “Mary” has totally blown over. Thank God.
Lily had a half day today but her nurse was able to come so I am able to get some stuff done around they house while Oliver naps. Getting stuff done around the house is code for catch up on blog, emails, some work and facebook. Got it!
Oh he is now up. That little guy… he is so cute. I love this age, he’ll be 10 months on Saturday and he is just so cute and funny. He has such a personality! He is clapping now, waving bye bye and yelling for Andi when I do. That is probably the funniest thing I have ever seen. Well the kid falling at Sonic dropping the food tray was really funny too, but I’ll choose Oliver yelling at Andi for the funniest Alex.
I posted new pictures on Flickr, check em out.
I’ll post again before the end of the year ;)
Monday, November 23, 2009
Lily is not sleeping all that well lately either and it really shows in her attitude during the day. She was so sleepy in horse therapy today she didn't do too well.
A good note on Andi Jane, I talked her into wearing her boots today and prepped her with the who cares speech that she can give if Mary gives her a hard time, but Mary didn't say a word about the boots. Andi Jane also said Mary was happy when Andi got to school and wanted to play with her, so while little girls can be mean, they can also be quite forgetful and also forgiving, so I can rest a little easy...for now.
It's 8:30pm and Oliver whom I just put down an hour ago is crying from his crib. Not a good sign. Not at all.
Oh and I have to say we are thoroughly enjoying Grandpa Steve and Grandma Cheryl who are down for awhile. We are having a great time and Grandma Cheryl is helping me so much I don't want to think about her leaving on Friday :(
Gotta get the baby boy...
Thursday, November 19, 2009
What was really sad today was the discussion I had with Andi Jane. Andrew and I went to Old Navy last Saturday, just us two, since G & G N are in town we are taking full advantage! We see some boots that are UGG knock offs but bright pink with hearts and flowers. Totally adorable! Andrew sees them and says we have to get those for Andi. I agree and we get them. We bring them home and she is in love with them! She wears them with what she was wearing. The next day, Sunday, she wore a black sundress with hot pink winter boots to church. Monday to pre school she wore a pink dress, tights and the boots. Then she says she wants to wear tennis shoes on Tuesday and on Wednesday, then today I say “your boots would match, wear them!” she says “no” I ask “why” and she says “Mary (name has been changed) says my boots are not cute.” “What?” I ask and she says the same thing again. I say “who cares” but Andi Jane cares. Although I am upset I let it go for a bit and tell her to get ready. She starts playing with Oliver, not getting ready, and he squawks a bit, probably because he is not feeling well, but Andi overreacts and cries, “He doesn’t like me!” I go to her and say “what is going on?” and she just starts bawling “Mary doesn’t like me! She is always mean to me!” Well I immediately grab her and hold her and try to dry my eyes before talking more to her. I realize she might be exaggerating, and I also realize Andi is the child who is constantly told to keep her hands to herself so maybe not everyone is a fan of hers, but it still broke my heart that she was heartbroken. I started fishing and I guess there have been a couple incidents that have happened, just things like Andi called her best friend and she said she was not her best friend, but Andi said that her teacher has stepped in and said we are all friends, so I know she is in a safe loving environment. I know kids don't all get along, I just wasn't ready for this to happen so early. I am even more aware that this is only the beginning. I know. Take it from the girl who had the school article that was written about her hung up in the courtyard with holes in the face and the word b*tch written all over. I know. I just wish she didn’t have to know.
This parenting thing never lessens up, does it?
Thursday, November 12, 2009
**be patient she will get into the light after a few seconds, I'm gonna need to ask for a good digital video camera for my birthday**
Tuesday, November 10, 2009
Dropped Lily off at school, Andi off at pre school and went home.
A couple hours later I cooled my head; I vented it out and had my brilliant idea. Lily just had a spine x-ray back in June, that was how she got the scoliosis dx in the first place and that is what I wanted the second opinion on. All I have to do is request a copy of that x-ray and bring it with us. I call and she says no problem, she will have it at the front desk so all I had to do was make that nice long drive out to downtown Phoenix and get it.
So Wed at the gym I tell bestie my plans and she says drop Andi off at school and bring Oliver to her place to nap so I can get it without the kids. 1 hour drive each way, by myself! Heaven! I could listen to what I want; quiet might be all I wanted. I didn’t have to worry about ruining nap time. I said sold and that was my plan.
I got to Phoenix and got the disk without a hitch. Feeling a little hungry I stop at Taco Bell. Right by the drive thru talkie thing is standing a homeless man on crutches. My initial reaction was to skip out on Taco Bell completely, but I decided to go on to the drive thru. I order and he quietly asks me for money. I look in my wallet and see a $5 and a $10. I selfishly refuse to give him that so I find a couple quarters and at that moment the drive thru talkie thing says “you have to leave our customers alone”, the homeless man looks a little scared and starts to walk away before I even hand him the change. I say “here, sorry it’s all I have” I lied. I drive up and apparently the employee heard me talk to the homeless man. “As long as he isn’t bugging you”, I say “I felt bad for him” the employee goes on about he has a broken leg and is harmless but so many effing old ladies say this homeless man is bothering them and he is cussing on and on about people being mean to this homeless man. If I didn’t think he had something nice to say amongst all his swear words I’d probably be offended. I get my two tacos and drive away. All of a sudden I have this huge guilty feeling, it overwhelms me and I realize that I have to give that guy my taco. This isn’t me, I know so many people feed homeless; I am not trying to say I am a saint, quite the opposite. I tend to be a bit selfish and stingy with my money. I am not proud, but I am telling you this because the feeling that overwhelmed me was foreign and relentless and even though I couldn’t find him at first, I knew I had to keep on looking for him. I slowly drive down a side road and finally see him hobbling down the road. I turn a street ahead of him, pass a park with another homeless person sleeping in and stop and wait for him to come by my car. When he does I ask if he is hungry. My heart was beating, my palms were sweating. I don’t do things like this. He looks me in the eye and with that same quiet voice says yes and I hand him my taco. A good one too, chicken fresco. He says thank you and God bless you and I drive away. I eat my other taco and began to worry if he wouldn’t like that taco; it wasn’t probably what he would order. I thought about how many times I have felt that feeling and I totally ignored it. And it dawned on me that was exactly what my pastor was talking about the pervious week. Listening to that urging voice, he said it was the Holy Spirit, you can call it what you want, but I know that wasn’t my voice. My voice says yeah that is sad, but not my problem. But at that moment, it was my problem. I look back and think I should have given both my tacos and some cash, I should have taken him to the hospital, I should have done more, but I do know I fed him. Maybe the first thing he has eaten that day, or in a couple days. This was something so simple. Cost me a dollar. And I am sure it made more of a difference in my life than his, but I like to think it is a beginning for me. I’m gonna be like George Castana and go with the opposite of what I would normally do.
Our apt on Friday with Shriners went smoothly; Andrew took time off to stay home with the other two so it was just Lil and I. The x-ray I gave them was sufficient enough, Dr said it was deceiving and while he can see why a Dr would rx a brace from the x-ray, if he just moved her around and checked her out physically he can see her scoliosis is flexible and not rigid and he would not at this present time recommend a brace. You could hear the cheering in my head after that. He said see us in 9 months and we’ll reevaluate it. So… yay! Thank God for second opinions. Thank God for the wherewithal to know to not just listen to one Dr’s opinion. And thanks to the awesome PT Lily has that fights every fight with us and knows Lily and knows what Lily is capable of and she encourages us to fight the right battles.
I know this post is long but it was a week of impact. It started feeling self pity and ended so wonderfully. If only every week could be filled with so many life lessons. Usually it is just filled with poop and boogers.
Monday, November 2, 2009
Sometimes when she's sleeping, hands folded by her cheek I close my eyes and see before me a child who can speak.
Sometimes when she's sleeping she seems so whole and well I can't believe she won't awaken with dreams of which to tell.
Sometimes when she's sleeping and the tears in my eyes overflow, I steal what kisses I can in the darkand wonder what joys she will know.
Sometimes when she's sleeping and my eyes ache with tears unshed, I pray she'll always be full of peace as she slumbers in her bed.
Sometimes when she's sleeping I can almost hear her say "I love you, Mom, with my heart and my soul, each and every day".
But always when she's sleeping I am full of pride at the miracle that is my daughter and the perfection that is inside.
Thursday, October 29, 2009
AJ: No what colors do you mix to make orange
Me: Orange is a primary color, you start with it
AJ: No Mom, you mix it
Me: No you mix orange and yellow to make red
AJ: No mom! We made orange in school.
Me: What did you mix? Brown and yellow?
AJ: No! Oh I know! We mixed yellow and red!
Me: Oh that’s right, red is the primary color.
Apparently I am not smarted than a preschooler. (I am totally humbling myself just by sharing this story)
Monday, October 26, 2009
Then he leaves for awhile, I wasn't home yet, when I get home I hear a whole lot of yelling and see a whole lot of muddy dogs. Uh oh. I did mention we really shouldn't do it without a fence, first, but it really wasn't a good time for I told you so. So what took Andrew 8 hours to build, it took the dogs about 30 minutes to dig up.After much complaining and lots of words that would make a sailor blush, Andrew raked it back up and put in a fence, a fence that I'm sure that has shorten his life by several years, he was not loving that project.
So here is the final product:
We aren't sure if anything will grow and most likely if anything does grow it will be snap peas next to tomato's, zucchini intertwined with carrots. Maybe we will make the first "oniotte". But this is our first run, a trial round before spring. I will keep you posted with how this turns out.
Sunday, October 25, 2009
She calls me the other day and says "do you want to go to see Grease it is at the Dodge Theater, Taylor Swift is in it?", "Wow! Really? Isn't she on tour? How is she is a play as well? What does she play Sandy?", mom says she really doesn't know. Then boom it dawned on me...."Taylor HICKS, mom, Taylor HICKS and no thanks."
Not that I wasn't all for the "soul patrol", but I've seen the play before and it couldn't compare to the movie if it tried, and don't try to tell me they tried, they did not.
Anyway, my mom makes me laugh and this SNL skit came to my head the minute that conversation happened.
Saturday, October 24, 2009
OMG! Oliver just took off his diaper, laughed, crawled naked butt across the floor, peed, held his little pee pee, laughed again, then pooped! Are you kidding me? Andi was well over a year when we had to put her diapers on backwards. I have to go bathe him.
Anyway, Lily is much better.
Ok back from the bath...this little guy is busy!
Here are some pictures from yesterday:
Thursday, October 22, 2009
She cried Tuesday from about 3-6 then passed out. Yesterday it started at 2 and lasted until about 6:30 when she passed out and today she was doing good, I took her to school for a bit, but got called two hours later. She has been crying since noon. It is 2:15pm and I finally put her in her bed. She's had Tylenol, I don't know what else to do for her. She has some swelling, but no redness, no oozing, she has no fever. I don't know what to do with her. It is so frustrating to have her screaming and have no idea what is wrong and no idea what to do. She had a crying fit the night before surgery and it makes me think maybe it isn't the surgery. She goes through periods where she does this. I've taken her to the pediatrician, the ER, Urgent Care all where they say nothing is wrong. I don't know if it is a neuro thing? Her meds haven't changed. Sigh. No idea what I am supposed to do with her.
Tuesday, October 20, 2009
When we checked her VNS last time at the neurologist he said if was no longer working. He hadn't checked it the past couple times we went for a visit so when it stopped we have no idea. I do know that Lily was doing fine off Vigabitrine for 6 months then while on the study all of a sudden she went crazy with seizures so was it the study med or did the VNS shut off? We had no idea so I will willing to see by having the VNS battery replaced and that is what brings us to today:
It was quite an eventful day. We get to the hospital at 6:45am; go back to pre op where we sit until 10am. They take her back and tell us it will be a short surgery. Andrew and I grab some lunch, check with my mom on the other kids (who were great) and try to relax, knowing she is in good hands, one of the best neuro surgeons in AZ is doing a simple procedure on our baby girl. I rush Andrew through lunch knowing I would feel more comfortable in the surgery waiting room and there we wait. We read Cosmo and laugh. Andrew let’s me know how right the magazine really is on pegging men. They are pretty spot on. Then in walks neuro surgeon. He is shaking his head and looks upset. My heart beats 4 times the normal rate, what is he shaking his head about? He says he has been trying to get the device to work with the new battery. He said he tried and tried and he even called the manufacturer, he came to the realization the wires around the vagus nerve are what is not working and came to talk to us. He said we really have to decide if we want to have the VNS because it can cause severe damage replacing those wires. I said absolutely not and he said he would leave them hanging just in case and just take the battery out and close her up. About close to an hour later they let us go in and see her. She is still sleeping and looks so beautiful. Eventually she wakes up; although groggy she was in a good mood. We got some pudding and gave her the meds she missed in the AM. We spend an hour or so in post op and head home. Lily was fine for about 2 hours and now the crying has begun. I’m sure she is hurting, she has a good size incision and who knows how much messing around in there they were doing trying to get the thing to work. They didn’t give her a rx for pain meds though and she just got some Motrin. She is still crying and crying hard. Poor girl.
The good news is Lily no longer has a large device near her armpit; bad news is I think it was helping her when it was working and I looked forward to having it back in and working. But we aren’t new to disappointment. Lily still has several seizures a day. She is on a full dose of Banzel and while we are seeing a difference in her drops and jerks, we are seeing more tonic clonics. Sigh. It is always something. I hate seizures.
So that is our day, Lily no longer has a VNS. She is in pain and I’m praying she will be feeling better and soon.
Monday, October 19, 2009
So I'm asking for prayers. Prayers that they don't have to do anything with the cords in her neck and she just has the battery replaced in her chest. Prayers that she isn't in too much pain. And prayers that Oliver is good for Grandma.
I promise to update tomorrow when we get home.
Friday, October 16, 2009
Lily is still under the weather, but hey it only took Walgreens 4 days to get the Tamiflu in! Just a shade under a decade. I started her on it today. Her fever is still low grade but the cough is a loud bark. Baby boy has had the cough but the fever started this evening. Oh and both Lily and Oliver's noses are running as well. We have a humidifier in all the kids rooms. Our home sounds more like a pound than a family home. Bark Bark.
Wednesday, October 14, 2009
Tuesday, October 13, 2009
Anyway, Walgreens still hasn’t gotten the Tamaflu in yet. This morning Lily is only running at 99 and she ate and is in fine spirits, I think I will still give her the med though. Andi still has a fever, today is day 7 but we’ll see what the antibiotics do. I doubt she is still contagious. We’ve been home bound for freaking ever! I’m dying here! The girls still have fall break and we haven’t done jack squat.
I’ve given everyone who comes to our home the option to not come and pretty much everyone has stayed away, but Lily’s new hab/attendant care worker has still been coming and has been so helpful. Yesterday Lily wasn’t up to working so she used her attendant hours to clean around the house. It was so nice! And as much as I adore Lily, it is nice to take a little break from feeding her, changing her, brushing her teeth, etc and she did that all for me. She is coming tomorrow too.
I’m crossing every finger and toe that we can at least get to the State Fair this Friday, the admission is only a dollar and would be a fun way to close up this crappy break. Although Lily isn’t due back to school until the 21st and she won’t go back then due to the surgery, her fall break will continue much longer. Andi however will be back to school Monday at 12:30pm. Oh yes she will.
Thursday, October 8, 2009
He is very concerned about Lily getting it. He said the minute she gets a fever and cough bring her in for the tamaflu. We're just going to pray Andi is the only one affected. She is our toughie so she'll be fine. Oliver and Lily maybe not so much.
Andi was a bit delirious yesterday, but she was still so cute. It's funny how she can be so sick and act so sweet and other times be healthy as a horse and act the like hind end of a horse.
Her voice is really hoarse (horse, hoarse, ha ha) and last night she said "I like the way I sound now, it is much better than the way I used to talk". I had to laugh because earlier that evening Andrew and I were saying she sounds more like Kandi than Andi, if you catch my drift. For those of you who don't we meant she sounds like a stripper. I'm not sure if that is really how strippers sound, not sure if I know any strippers, I mean I guess I could, we don't know what goes on behind closed doors, but I guess it isn't nice to say people with hoarse voices sound like strippers.....wow! Was that a tangent or what? Errrr let's steer this back on track.
Last night I was thinking about the olden days, and kids in third world countries and how they handle being sick. Andi went about 8 hours yesterday without Motrin and that kid was sick. I mean sick. Her face was hot, her cheeks bright pink, chills, she'd say silly things, I just can't imagine what it would be like to not have something as simple as Motrin for sickness. I guess that is how kids died back in the past and now in places where they can't get Motrin. How devastating is that thought? Heartbreaking. Makes me want to buy a bunch and send it out. Is there a program for that? I mean Starbucks sends coffee to troops. There has to be Motrin to kids who need it program. Tangent, but a better one this time.
I want to give a little Andi brag since she is so cute and sweet when she is sick. Still running at 100 even with Motrin right now. I was catching up with Oprah and there is a mom who was burned pretty badly in a plane crash, her story was pretty popular on the blogs. Anyway, she was very inspirational and Andi saw her and said "she is beautiful just the way she is". Sniff sniff.
Pray Lily and Oliver can stay oink free please.
Wednesday, October 7, 2009
The first day we went to the park. The second day we went to the zoo. The third day we will be going to the pediatrician. Sigh. Andi Jane spiked a fever last night and it's still running strong. I wouldn't take her to the doctor except for her tongue is white and her throat hurts and man alive her breath smells like she dined on a poop sandwich. We can't get in until 4:45pm but it works out well since Andrew can be home with the other two. Lily has PT at 5pm and Oliver is sleeping so I'd like him to continue doing that. I'm worried she has strep. I'd hate for the other kiddos to get it. Andi Jane has been so clingy, I get it, but ugh! She wants to be on my lap, she won't nap, she just wants on me. She wants me to feed her when I am trying to feed Lily and Oliver and I get it, I do, but it's hard. I am praying whatever it is will be over quick and if antibiotics will kick it then we want them now.
Lily is doing better on the new med. Her jerks and drops really seem to be less in frequency and she isn't tired anymore. Her appetite is still not the same and we still have two more increases so she's living off pedisure and probably will be for the next few weeks.
The timing is so dumb, she will have her VNS battery replaced on the 20th. She goes back to school on the 21st. So her fall break will probably end up being 3 weeks long. I did get her on the cancellation list and told the nurse she is off school and this week or next would be much better, but I doubt she'll get in any sooner.
So that is the happenings over here. I will update what happens at the Dr's when we get home. My poor spunky girl.
Not so spunky.
Thursday, October 1, 2009
Wednesday, September 30, 2009
Tuesday, September 22, 2009
Cut to last month, we are at the pool in our hotel at Disneyland and Andi looks at me seriously as says she has to go potty. There are two I have to go potty’s with her, one is I want to see the bathroom at this restaurant but I really don’t have to go and I have to go now or I will potty all over wherever we are. This was the latter. I sense the urgency and pick her up in a towel and look for the nearest exit. We make it and she goes. I’m in the stall next to her (what mom can pass up a potty break?) and I hear her. You know…details not needed. “Mom! I have diarrhea!” “That’s ok honey, you made it to the potty” and she says “But I didn’t even eat my boogers!”
Tuesday, September 15, 2009
Ok seriously Lily got her new chair yesterday and it is like a Cadillac compared to her old chair! The old chair was good, it lasted 5 years for goodness sake, but this one reclines, it has a head rest she can't get her head past and padding and cushions to make the most uncomfortable comfortable!
It is a blue sparkle color that I am a bit disappointed with, I think it looks plain dusty, but we let Lily choose and she made the choice very obvious, so no pink this time around. I have to admit I kinda wish I just said pink anyhow, but Lily is 7 and every 7 year old should be able to make their own color choices, either it be their cereal bowl or wheelchair.
Oliver just won't quit getting teeth. He and I both got a cold two weeks ago but his nose is still running and I looked in his mouth today and saw that more are coming in. This kids mouth won't let up. I never know if he is sick or teething. I can't wait to see how he is when he isn't uncomfortable. He is still a sweet boy, but he is rather attached to me and it seems he is rarely out of my arms these days.
Andi Jane is doing well and LOVING pre k! I am so glad I decided to put her in. She can't wait to go and has so much to say when she gets home. It is worth the extra cash, I get a break and she is having a blast. She seems to have a large crush on a boy in her class that goes up to her shoulders. Andrew says it is because she can push him around. I asked her if she likes him and she said yes and I said I'm gonna tell Joey (he best friend/boyfriend) and she said no mommy! Don't tell Joey! Lol, it starts so early!
Oh and yes I am very excited about the new fall line ups. What can I say, tivo after the kids go to bed is my saving grace.
Thursday, September 3, 2009
Lily's birthday was Friday and we first had breakfast with the princesses, it was very sweet and yummy. Andi said it was a dream come true. She hugged everyone. The princesses were all wonderful with Lily. They sang to her as well. Unfortunately though Anaheim was experiencing record heat, it was 105 plus humidity. Us folk from Arizona won't even go to the zoo for a few hours when temps are in the 90's so the weather didn't fair well with us. We didn't spend as much time at the parks as we would have liked, but we stayed at the Grand Californian that is IN California Adventures so we were able to go back and forth. We had a great pool so we spent a lot of time there. One night my parents watched the kids and Andrew and I went with my sister, brother, niece, cousin and Andrew's cousin (whom we hadn't seen in years but just so happened to be in CA when we were so we met up (very cool!)) went on the big kid rides until 10pm! It was a little too much for me. That Hollywood Hotel of Terror (or whatever) is just too scary for me! I felt like I was approaching death and everyone found that hilarious.
We went on It's a Small World, Pirates (Andi found way too scary), Andi did the teacups with her cousins, and a few other rides. I do hope we make it out there again before Oliver is a toddler and do it during the week and in the fall. We were saying we had never been to CA and not had to have a sweater at night and no sweater needed on this trip! Too hot!!
But Lily's day was very special. It appears that every single person employed by Disney has to wish you a happy birthday if you are wearing that button. One guy was sweeping the floor, looked up and wished Lily a happy day. That was very magical.
The kids all slept well there, Lily included! That is huge! I certainly was not ready to go home on Sunday. Hot or not, Disney is the place to be.
Tuesday however, not so cool. I took Lily to the Ortho, whom I do not like anyway but due to the services here in order to get her wheelchair we have to see their ortho. Anyway, he dx her with scoliosis. I knew this since the geneticists called to tell me she was referring us to scoli clinic. Anyway, he wants Lily in a rigid brace for 23 out of 24 hours a day. Obviously I wasn't running to get that done. I listened to what he had to say and decided to get a second opinion.
I had a long talk with Lily's PT (whom is wonderful and very knowledgeable) and she was saying this embarks on an issue about quality of life, and I agree. Lily's movement is how she communicates, we take that away then what? I am not saying ignore her scoliosis, but I think he's thinking may be a bit old school and I think there are more options out there. I am so thankful we have private insurance where we have the option to explore. If all we had were the states services (which I am thankful they do help with co-pays) we would be stuck. I spent way too many years listening to Dr's and not my heart and I'm done. By the way this is the Dr who told me when Lily was 3 that she will never walk therefore didn't require any bracing for standing. *Sigh*
VNS replacement is scheduled for my dad's birthday 10/20. We are the first on the cancellation list so we may go in sooner. Lily has fall break two weeks before that so I asked if we could work something out during that time, that would be great. We'll see.
Check out our slide show for recent pictures.
Sunday, August 23, 2009
Thursday, August 20, 2009
When I got pregnant with Andi Jane we feared, she can’t be like Lily. How can we love her like Lily? She could never replace the cool, sweet flavor that Lily brings to our life. Will we love her fairly? What if she is more like a stale cookie compared to Lily’s ice cream? But she wasn’t. Andi Jane is sweet and sticky. She is more hot than cold. She naturally has an abundance of energy just like most people get after a surge of sugar. Her big brown eyes, her perfect teeth smile, her ability to tell jokes, to make up songs, to dance. Is she like Lily? No. She’s different, of course! But she’s a perfect fit in our family. She is the hot fudge that makes the ice cream even better.
Adding Oliver to the family I feared again, not so much my inability to love him, but understanding and relating to him. He is a boy. What do I know about boys? Will he love me back? Will I treat him differently? But of course when he came those worries flew out the window. I loved him with this amazing intense love that overwhelmed me at his arrival. These past 6 months watching him grow; finding out his personality makes me fall deeper in love. His happy demeanor, his sweet smile, the way we can stop him in his tracks by rubbing his ears. The way direct sunlight will make him sneeze without fail every time. Oliver is indeed the whip cream and cherry on top of our hot fudge sundae.
I feel like I ordered my family according to my sweet tooth. How lucky can I be?
I thank God every day for my sweet life!
Sunday, August 16, 2009
Andi and I loved the pre school and I am so glad we decided to check it out. I still was going back and forth. This is my last year of having her at home, she will start Kindergarten next year and it will be all day. As much as she can drive me crazy, I know I will really miss not having her at home with me.
The school is great though, just 3 hours 4 days a week. They let her sit in on the class with them and she loved it! Then we got the grand tour and she wanted to stay. This will be so good for her! She loves socializing and I think we will get along a whole lot better when we get a little break from each other.
I'm totally convinced 6 months is way too young for a baby to be cruising furniture. Oliver has no idea what he is doing so when he tries to go from the couch to the music table he eats it every time and screams and gets crocodile tears. Every time with out fail. 9 month old kids who cruise kind of "get it" and try not to get hurt. This boy is hurt all the time.
Andrew and Andi just got back from Greer, they went for the weekend and I am glad to have them back. Lily and Oliver are a lot of work by myself!
Wednesday, August 12, 2009
I do still work. I just do it mostly from home and I go into the office once or twice a week. I am in charge of the most ridiculous 401k plan that I want to throw in the dumpsters...by the way, why is there no 401k plan administrator day? We need one. We're going through some changes demanded by our current economy and let me say it is a a bad word Andrew always says....something about clusters and f bombs.
But when I go into the office I carry a entourage and there is no Jeremy Piven involved. It is an energetic 4 year old and a baby, who honestly is a piece of cake to care for....let me reiterate, energetic 4 year old.
I have been running in circles with this whole thought of pre k. I figure, she already knows all she needs to know to go to Kindergarten, so that isn't an issue. She gets socialized by gymnastics, church, play dates, etc. That is not a problem either. Pre k is expensive and our van just gave us a new payment to add to the list. But she is BORED at home. I cannot keep up with her constant, "Let's swim", Let's dance", "Let's craft" etc. She has more energy than any other human I know and she never naps. Therefore I have decided she is going to pre k. I don't care if I have to dance at night..... she is going to pre k. You all know no one wants to see me dance, but my point is, we will not eat groceries in order for her to get out, get some structure and make friends. We are going right now to tour the one I like most, from referrals and the website.
I'll keep you posted.
And Dr. Laura, eat it. She will enjoy it better than hanging out with me, all day, every day.
Besides maybe now I can only take one kid to the gyno.
Monday, August 10, 2009
Last night we had a family day at a local pool for our church. It was so much fun! I really love our church and all the awesome families I am getting to know! The kids had a blast! I am amazed at the local High School pools we have here. They include huge areas for kids with jungle gyms, water slides, lazy river and a large toilet bowl type thing that spins you around. It is amazing at how well Andi swims! She was even jumping off the diving board and swimming to the edge. It was incredibly impressive, especially since besides her the youngest kids to jump were well over 6 yrs old. Lily loved swimming around with dad and Oliver is a water baby! He LOVES the water!
Today we used our Hab hours for some good! We found someone we like and she is able and willing to take Lily to horse therapy at 6am for me. WOW! What a blessing that is! I still have to get Lily up, fed and dressed by 5:45am, but then she takes her for me and brings her back. So far so good. Last week I took her with us to train her and this week she did it alone. This really makes our mornings easier, Andrew can now go to work at 5:30am like he likes to and not have to wait around for me to get back with bug after 7am. So this is a good thing, let's pray it continues to work well. It is so hard to let someone else take your child in their car and be responsible for them. But I am doing my best to relax some. Just some. I can't totally and won't.
So we're doing well. Totally looking forward to our trip to Disney at the end of this month, Lily will be the luckiest birthday girl this year and who deserves it more than her????
Saturday, August 8, 2009
Not sure what we are going to do on our family vacation to Disneyland. I don't want her waking everyone up all night long, but I also rather not give her the Valum. I swear if she gets it at night she has more cluster seizures the next day. Not sure if that is possible, but I swear it to be true.
I just think maybe it is this enormous growth spurt she is going through right now, it is making her off balance in every way. But seriously if she is this moody at almost 7, I cannot wait for 13.
She still has a LOT of myoclonic jerks and they really make her upset. I don't know what helps those. It's so annoying we stop the grand mals that ruined her day, but now she jerks and drops all day long which piss her off which in turn of course ruins her day.
Have I said it today? I HATE SEIZURES!
On to the others, Andi Jane had 3 fillings the other day and did really well. My wallet is empty but she did well and I don't think she will be afraid of the dentist the rest of her life, more like the opposite. I think they shouldn't make fillings, that fun. When I tell her she will get cavities if she doesn't brush she says that's ok that was fun. She was pretty goofy on the laughing gas. She told the dentist she had been waiting for that appointment all year long. They said she should get out more often. LOL.
Oliver is good. Not only speed crawling, but pulling up on things. AND babbling. Thank God! I wouldn't care if he didn't crawl until a year as long as his speech were on target. Speech is just so huge and it is the hardest part of dealing with Lily, the lack of communication, so to hear those so important first steps to language, sure takes a huge load off my shoulders. Thank God!
Saturday, August 1, 2009
Tuesday, July 28, 2009
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
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:
Monday, July 13, 2009
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?
Tuesday, June 30, 2009
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!
Sunday, June 21, 2009
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 :)
Wednesday, June 17, 2009
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.
Friday, June 12, 2009
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.
Friday, May 29, 2009
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!
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